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BRIAN'S FIGHT
Thanks for stopping by! This is the place for the most current information on Brian's fight. We will update regularly with news and events. Please be sure to share your messages and thoughts on the GUESTBOOK page.
3/23/2012 @ 12:05pm
As the fog continues to clear from a few rough weeks, the mindset of this cancer fighter has turned to a slightly more subtle sense of gratitude, healing, and harmony.
The challenges of this battle are unavoidable. It's not a fair fight. One day it appears to be steady and predictable, the next day the gloves come off and it's knock down, drag you out behind the wood shed, bare-knuckle chaos.
Having and fighting cancer doesn't make me special or immune to life's ups and downs. I think things can pile up a little quicker, however. Perceptions can change dramatically and abruptly, and chances are you won't be ready.
A month from now, Lupe and I will be exchanging wedding vows in front of some close friends and family at a beautiful venue here in Austin. In a world of Gamma Knife, face and neck reconstruction and rehab, seizures, and 5 rounds of facial radiation treatments in the next 2 weeks, it seems almost impossible. What it really is, however, is yet another example of the extraordinary beauty that is life. Things do not have to be perfect to be right. Or, better yet, perhaps "perfect" needs to be redefined.
I wonder how many soon-to-be grooms in the history of the marriage institution could so calmly and confidently proclaim that getting hitched will be the easiest, most perfectly sensible action they'll ever experience. Oh, I wonder.
That, my friends, is the LOVE.
Up next, the HOPE.
The HOPE has emerged in a powerful form and at a time when I feel like I could really, really use a shot in the arm. (Not literally, nurses!)
You may have to scroll down the page a bit to be reminded of a treatment I have called TIL therapy. This is an option that involves two components. First, we remove cancerous tissue from my body and attempt to extract my immune system warrior cells that are pre-programmed to find and fight the rogue melanoma invaders. (There is undoubtedly a much more scientific and technical explanation for how this all works, so feel free to rev up your favorite search engine for the fancier version if you so desire). Next, we attempt to grow and reproduce tons of these brave warrior cells in a lab.
So far, we have attempted this process twice with no luck. Apparently, it's a difficult and tedious task to produce a virtual immune system, capable of killing cancer, in a laboratory. But, truth be told, MD Anderson is no ordinary place. And, ultimately, hope prevails.
During my most recent surgery, the decision was made to try again.
I got word on Tuesday night, the little guys appear to be cooperating and I even heard the word "successful".
This is great news!
It's not a home run and there is still much more to the story that will have to play out, but it's progress and it's potentially a game-changer down the line. When you're in this fight, you always look ahead and anytime you can add a solid weapon to the arsenal, you take it and you charge ahead. And, the reality is, I don't actually need this treatment at the moment. But, goodness, it's nice to know it's there.
So, we've got the LOVE, we've got the HOPE. The only thing left is the FIGHT LIK3 HELL! If the world is turning, the FIGHT is burning! And so goes the battle. Some good days, some bad days. Some highs, some lows. Some changes, some things the same. Sounds a lot like life to me.
I'd like to ask everyone to send some positive thoughts and prayers to my grandma. She's been bravely battling Leukemia for the better part of 10 years now and was diagnosed this week with a form of breast cancer. She will be undergoing surgery on Monday. She is strong and positive and her doctors feel optimistic that she should be just fine. She is such an inspiration to me for obvious reasons. Thank you for taking a moment to lift her spirits! Love you, Gram! FIGHT LIK3 HELL!
-Brian
3/16/2012 @ 9:58pm
OK,OK,"Uncle!"
It's me. I'm still here. It's been awfully dark around here. And heavy! Like pushing the boundaries heavy. I've been avoiding the thought of updating this blog for fear that I would lose site of my mostly-positive, FLH sanctuary. This is a delicate and precious place for me.
Equally importantly, this is an honest and unfiltered space and sometimes the only real truth of the matter is that things just flat-out suck!
Everyone knows of the unquestionable pride I take in beating the brakes off of cancer. There's not much in life that creates more joy for me than to fight this disease and be around others that are doing the same. As I've mentioned before, this is a marathon battle with a powerful opponent. Although I wish I always had good, inspiring news to report, that's just not realistic and I really have no chance of success against cancer if I'm not able to step into the flaming pits and face this beast squarely, eye to eye. The odds indicate that I may not win every round. I am, however, holding myself accountable to walk away from each round with something meaningful that I can use, moving forward.
The report as of this moment is that the cancer is pushing me around a bit and has managed to scratch and claw it's way into my spirit. With the Gamma Knife, the painfully slow recovery process from face and neck surgery, and the seizure, I've been pulling and pushing just to tread water. It is complete and utter MENTAL WARFARE full of fear and doubt and frustration. It's dark and it's overwhelming. It's impossible, really. There is no manual to refer to. There are more questions than answers. You fall, and you keep falling well beyond the depths that you thought existed. At some point, you can't bear it anymore and convince yourself to take a quick peek. It's way too close for comfort.
The truth is that I've been lingering in this weary and fragile zone for what seems like a short eternity. It's an unusual position for me.
I'm offering fair warning here that this is not just your usual blog entry update. Things have changed. This whole fight has changed. Fear is powerful. Fear motivates and fear paralyzes. Fear demands a response and makes you commit to a side. I have never really been afraid. I'm not trying to be some Joe Cool Tough Guy here. I guess I'm just a product of my environment. I've struggled, I've experienced big time adversity. I've been challenged and pushed around. I've just never allowed fear to settle in. This is not to say that I've never been afraid of anyone or anything. That would just be silly to say. But, there's fear in life and then there is the fear of death.
My foundation has been rocked and the only option left begins now. This moment in time is now officially a reemergence, an awakening. It's time to crawl back out of the darkness. It's tough. I'm wounded and scarred, literally. And nothing's over. It's never over. But, essentially, that's the whole point.
Today, this evening, I choose to go forward. It's not a corny rah-rah thing. I need to write it and I need to read it. So, I'm pouring my soul out for the world to come and see. I'm vulnerable and things have been overwhelmingly tough but I'm not defeated and I'm not going to stop.
I'm so incredibly fortunate to have such an amazing woman by my side. I'm unbeatable with her here with me. And to those of you (family and friends) that offer so much love and encouragement, it all matters and it all means so much to me. I know I lean on some of you very heavily but I cherish your support so dearly.
And to my fellow cancer fighters, survivors, my Battle Mode, LIVESTRONG warrior Family, let's make this motherfucker pay! Lance, Doug, Community Leaders, fundraisers, supporters, ARMY, thank you for your relentless efforts! NO MERCY!
Go Doctors! Go science!
Que the Gloria Gaynor, I'm getting back on the horse!
Love to all!
-Brian
3/8/2012 @ 8:52pm
The reality of living with, and fighting cancer can often boil down to one solid, simple truth: you just never know what happens next.
On Tuesday morning, Lupe and I were with our friends from Alpheus Media filming some updated interviews as a continuation to the Fight Like Hell project we did for LIVESTRONG.
Everything was going fine and normal, until suddenly I was asked a question and I sort of just locked up. I simply could not respond. I was conscious and fully aware of my surroundings, I just couldn't speak. I stood up and took a look around, attempting (I believe) to shake off this strange feeling. Lupe grabbed me and tried to calm and comfort me. I could hear her asking me if I was ok. I wanted so badly to let her know I was ok, but just couldn't muster up the words. My legs were twitching and shaking uncontrollably. Another few seconds and the lights went out. The next thing I remember, I was being loaded into an ambulance.
I had just had a seizure.
In the back of the ambulance, the EMT was asking me a series of questions. I had no idea where I was, I couldn't remember the date or day of the week. I struggled to remember what year it was.
Obviously, I was scared shitless. The truth is, as I was experiencing this episode, I really and truly felt like it was the end. Having a seizure, not being in control of my body, not able to speak or respond to Lupe yet clearly seeing her concern and worry. I thought I was dying. I simply couldn't stop it from happening. I remember feeling so pissed that this melanoma had gotten the best of me. And also so emotionally distraught that I could not comfort Lupe. I've never felt more helpless than I did at that moment.
I spent the better part of the day on Tuesday in the ER recovering and trying to put the pieces back together. We went home and I've continued to take it easy. And yes, still recovering from surgery!
I've started the process of gathering an understanding of what happened and why. One of the lesions we treated during my last Gamma Knife treatment was in my right temporal lobe. This area is commonly associated with epilepsy and other disorders. I'm not sure if the treatment triggered something or if the cancer triggered something, but clearly something was aggravated and I felt the wrath.
I will continue to be monitored and hope to gain a better understanding of what happened and what to do to hopefully prevent a recurrence. One thing is for sure; I hope that never, ever happens again. And I thank God that I made it thought that and lived to blog about it.
Be well.
-Brian
2/29/2012 @ 1:53pm
Back in the saddle again.
I've had so much on my mind over the past few weeks. It has been impossible for me to get on here and actually write anything. It has been all out BATTLE MODE since my last post.
Let's get everyone up to speed on the excitement.
It started a couple of days after my last update. Mom and I drove to Houston for a Gamma Knife treatment on February 8th. It's my third go-around with this procedure, so everything went as I remembered from before. We got through the treatment without any unexpected issues. The team reported to us that everything went well and they were happy with the results. We zapped two lesions in my brain, each one about 1.8cm in size.
After the procedure, Mom and I returned to the hotel for some rest. The following afternoon, we went back to MD Anderson for a consult with Dr. Amy Hessel at the Head and Neck Center. Dr. Hessel discussed the upcoming surgical procedure that would involve removing my left parotid gland as well as an upper neck dissection to remove a mass. I instantly felt calmed and comforted by her demeanor and confidence. She explained the risks we were facing, but also her perspective on the goals of the procedure.
The huge concern about any kind of surgical procedure to this area is unintended interaction with facial nerves and/or muscles, etc. There is real danger in play.
She reassured us that her top priority was to preserve these nerves so as not to cause any permanent harm to the functionality of my face.
After the consult, we scheduled the procedure and Mom and I were headed home.
The procedure itself was scheduled for February 15. Lupe and I headed back to Houston a day early for necessary pre-op protocol. Ah, yes, the joys of spending Valentines Day prepping for surgery to remove cancer from my face and neck! I really know how to please my woman!
We were able to squeeze in a nice dinner on V-Day before retiring to the hotel.
We had another early morning arrival at MD Anderson the morning of the surgery. We got checked in, got situated as far as where Lupe could find me when I woke up, and suddenly there I was... it was go time! Well, technically, it was nighty-night time for me, but go time nonetheless.
Last moments for Mr. Parotid Gland. Feb. 15th
When I woke up 4 1/2 hours later, it was all over. After a few more moments, Lupe arrived and recovery officially began. Dr. Hessel reported that everything went very well. She was able to remove all of the melanoma without compromising any facial nerves. It was music to our ears to hear that. I was basically numb and only half conscious. We waited for a few hours before being transferred to a private recovery room.
Here is the first post-op photo...
I had two drainage tubes coming out of the back of my neck. These drainage tubes are necessary to prevent any excess fluid buildup under the skin. They are also EXTREMELY uncomfortable. Well, truthfully, the whole damn thing is uncomfortable, but the tubes were a special treat.
I spent the night at the hospital as a precaution but was given the green light to leave the next afternoon. Lupe and I packed up and hit the road back to Austin. It's a pain in the neck driving for 3 hours the day after surgery! But, as always, we made it home without issue.
The next few days were kind of a blur of sleeping, resting, pain meds, and an abundance of bad television. Lupe was by my side, kicking ass as expected.
Mom came by on Monday to bring over some lunch and visit. As she was leaving, I started having some bleeding issues around one of the draining tubes. We agreed that a trip to my local surgeon was probably a good idea because we simply could not stop the flow of blood.
The surgeon turned out to be a great idea. He checked everything out and decided it would be a good idea to pull the tubes out. Can I get an "AMEN!"
Life got a little better that afternoon. I slept more comfortably. There was less maintenance to attend to. It was a beautiful thing.
The days turned into weeks, and a couple of days ago I emerged from the bed and started to move around a little bit. The wound is healing.
I returned to the surgeon on Monday and got the stitches taken out. And so the recovery continues.
As usual, one recovery naturally leads to the obvious question: now what?
Lupe and I returned to Houston yesterday for a consult on a radiation treatment. The doctors want to be certain that the melanoma is all gone from this area so we will undergo a cycle of 5 radiation treatments starting around March 22. The idea is to zap any remaining cells that might have eluded the scalpel. We'll get those suckers, yet!
So, that's were we're at. Still pretty sore, but recovering and getting better everyday. We kicked some serious ass over the past few weeks and I'm happy to say things went very well.
In other news, Lupe and I are staying busy with the joys of wedding planning. I think most of the hard work is now finished. I am also looking ahead to the upcoming baseball season in Wichita. I can't wait to get back on the field. This laying around popping pain killers is not my cup of tea!
Lastly, I wanted to send a shout out and special hello to Freddy Zamora. This young man was recently diagnosed with lymphoma and is battling his way through some tough treatments at the moment. He's 17 years old. I'm hearing he is doing very well so far. Keep up the good work, Freddy! Wishing all the best for you and your family! FIGHT LIK3 HELL!
We appreciate your continued love and support.
Be well.
-Brian
2/3/2012 @ 8:45am
Oh, Las Vegas. Where do I begin?
Like many other people, I possess some fond memories of many trips to the desert paradise. It's the kind of place that you know is going to blow your mind, then you get there and it literally does. It's been a few years since Lupe or I have been there but it's still bigger than life and brighter than ever. Impressive.
Our flight in arrived a little ahead of schedule on Sunday morning. We took our time grabbing our luggage. We were told to look for a driver holding a sign that said "Rose". We found her and away we went.
We got to The Venetian hotel and got checked in. They had us scheduled for an early check in. We got our keys, our welcome package with my schedule of events, and headed to our suite. They should actually just call it what it really is... a SWEET.
After a moment to catch our breath, we were off to go meet Lupe's parents who had been in Vegas all weekend. We had breakfast, did some gambling, and had a nice few hours to hang with them before I had to get to work.
I met up with Sheri and Sara from Snow Companies. They were basically my handlers for the trip. Quite the dynamic duo. They had everything organized and scheduled, and were really pleasant to be around. They were so helpful and supportive. It was obviously not there first rodeo.
We rehearsed Sunday night for the opening session on Monday. The stage, the production, the scale of this event just blew me away. The magnitude of executing an event like this is just simply beyond explanation. It was an incredible sight to see it all come together.
On Monday afternoon, it was time to go live.
I had prepared to take the stage in front of approximately 2,500 guests to deliver a short, although touching, introduction to my journey with cancer. My segment was the opening of the general session and I had rehearsed several times to make sure my dialogue was up to par. I knew I was going to set the tone for the rest of the session, kind of like a leadoff batter in Game 1 of the World Series. I was coaching myself up as I took the stage... "It's fine. Just don't blow it!"
Well, thankfully, I didn't blow it. And the fact that there were actually close to 5,000 people in the audience didn't seem to phase me. Myself, another guest patient (Ami), and the rest of the speakers all hit home runs despite some ill-timed teleprompter issues. The 2012 Genentech National Sales Meeting kicked off in style.
I felt so honored to have the opportunity to share my story with such an incredibly talented group of people. And I was extra excited that I didn't screw it up!
Following the opening session, it was back to rehearsal for the Q&A engagement, which was set for Tuesday morning. I got some time to chat with Keith and Lisa, a couple of Genentech employees. Lisa works within the Access Solutions program which actually made it possible for me to continue receiving Zelboraf, without any health insurance, after the clinical trial had ended. She was great. Keith was awesome (and is hopefully getting plans in place for this Fall's LIVESTRONG Austin Challenge).
The Q&A session was intimate (only about 250 people. ONLY!) and personal. I was able to elaborate on some of my struggles as a young, uninsured adult dealing with the stress and obstacles of this diagnosis. We discussed the power of open access to cutting edge treatments and how Genentech is working to ensure everyone has the ability to receive necessary drugs. It was very inspiring to spend some time with some great people who are dedicated to giving people like me a chance to survive, and even flourish, despite challenging circumstances. I think they might have liked me a bit as well!
I felt a strong sense of responsibility throughout this whole experience, almost as though I was somehow representing other cancer fighters who are battling as well. I made a point during one of the sessions to mention Heather and Rob, two fellow warriors that are at war with melanoma. I wanted to make sure that everyone understood that this drug, this meeting, this fight... it's not just about me. Everyone that battles cancer has their own unique story and journey. We all have families and friends that ride the wave of emotions right along side of us. These developments and these drugs, they impact all of us. They give us strength and they give us hope.
When the "work" was done, Lupe and I hit the town for a few hours and then enjoyed an incredible dinner together. It was the perfect ending to an awesome trip.
A huge thank you to Genentech, Snow Companies, InVision, and my buddy Doug! Also, wishing all the best to Ami as she continues her inspiring journey with rheumatoid arthritis.
Be Well.
-Brian
1/27/2012 @ 12:00pm
A super quick turn-around and Lupe and I are back home. Thanks to an intensely exhausting and financially responsible mission, we somehow managed to drive to Houston, spend a full day at MD Anderson, and return home to sleep in our own bed, all in less than 24 hours.
Smart? Maybe not. Mission accomplished? Absolutely.
As far as the visit goes, we learned a few things. First off, it would appear that Zelboraf is still working. Sort of. Last weeks scans and reports showed some improvement of lesions in my liver. Further reports indicate that the same can now be confirmed for my lungs. The cancer is shrinking in those vital organs. That is what the science world technically refers to as "good news".
On the other hand, I have an enormous lump that continues to grow on the left side of my face, in the vicinity of my parotid gland. Not to mention the new brain lesions.
It's a tricky situation. It's not black and white.
One thing is for sure. I am scheduled for Gamma Knife on February 8th. We'll treat the spots on my brain and proceed from there.
As for my face, there is the potential for surgery or possibly another drug. Surgery is risky. There are lots of nerves that control muscles and tendons in this area. A wrong move could result in partial or complete paralysis of the left side of my face. I could lose the ability to blink my eye. Or smile. Or even lose control of my mouth which would affect the way I talk. This is not a scar or removing a chuck of flesh, this is body functionality. And it honestly freaks me out a little bit.
If we go the route of a different drug, most of the promising new treatments are going to require stability of brain metastases. This means treating the brain with Gamma Knife and then not showing any new lesions for at least 2 months. That's 2 more months or "what if's" and, potentially, 2 more months of letting the mass on my face continue to progress.
Then there's the mass on the back of my neck. This spot continues to grow and appears to be somewhat close to some pretty significant arteries. The neck is a very tricky area as well. Lots of nerves, lots of muscles, and some sensitive connections between spinal and brain anatomy.
This is not easy stuff. And I never like the idea of blogging about things that are going to freak people out or make them worry. I'm not panicking and I remain very healthy and strong. Lupe and I talk at length often about where things are and what the next steps might be. We trust in the doctors we have on our team. The thing about incurable diseases is that you just do what you can do, and you continue to think positive even when you know that what is happening in your body is way above your pay grade. And you hope.
I know that the cancer is active. It's growing and it's spreading. It's trying to take over everything. I wish it wasn't but it is. I also know that there's no chance in hell that I am going to give up or give in. Everyone knows that. My doctors know that. If anyone doesn't know that, I make sure to remind them on a regular basis. I also remind myself constantly. It really is a battle from the mental perspective. But the battle, the stress, the burden on my family and friends, the chaos and concerns that cancer creates... it all motivates me to fight back. The harder it gets, the stronger I get. The smart money is on #3.
Speaking of smart money, Lupe and I will be off to Las Vegas on Sunday. Probably sounds crazy. All this madness going on and we're just casually hopping a flight to Vegas, baby!
However, it's all relative.
As a recap, we've been asked to participate in the National Sales Meeting for Genentech (the company that manufactures the drug I am taking). We have a full slate of activities planned. I will be speaking during the opening session, sharing some of my journey with an estimated audience of around 3,500 people. HAHA! The next day I'm participating in a Q&A session with a smaller group to more specifically discuss my experience with this drug, as well as my experiences with the Genentech program that has given me continued access to the drug.
We're excited, and frankly we could use the diversion. I'm actually really excited to get to shake some hands of the people who are literally working to save my life. It's quite an honor. We will also sneak in a short visit with Lupe's mom and stepdad. It should be a great little trip.
Thank you for the continued love, support, and prayers. Rough waters are just part of it. It's a reminder that this is a fight for life. But, don't forget about the guy that's writing all these updates. I'm not about to just go run and hide.
Be well.
-Brian
1/23/2012 @ 2:21pm
Here we go.
Lupe and I are gearing up for another trip to Houston and MD Anderson. We will get up and go around 2:30am which will get us there around 5:30am or so. My first appointment tomorrow is at 6:00am.
We'll start with a CT scan of the soft tissue in my neck. There is some kind of mass there that needs to be further explored.
After the CT scan, I'll have more blood work done and then a consult with the radiation oncologist, Dr. Paul Brown. During this appointment, the doctor (whom I've never met) will explain the Gamma Knife procedure, including the part about screwing the metal frame into my head, and how we will zap the unsuspecting cancer cells with a targeted beam of amazingness, rendering them completely useless and hopefully dead. At some point I'll chime in with a timely joke about this being my third dance with Gamma and we'll all high-five and get on with scheduling the treatment.
It's incredible how much my life has changed. I remember being so nervous the first time someone told me they were going to purposely shoot a beam of radiation at my brain. Now, because I've been there and done that, and I've seen the results of the treatment and how well it's worked for me, I'm actually totally calm and (dare I say) EXCITED! I know this is going to work. I'm confident in the people that execute the procedure. It's not all fun and games, and there is some pain when they install the frame on my head, but it's about the results. There are plenty of things in life that may be painful during the process, but in the end, we wouldn't trade the outcome for the world. The truth is, Gamma Knife is a no-brainer. HA!
We're not sure yet when I'll have the treatment but I'll post as soon as I can. We have been overwhelmed with love and support from so many. I can't begin to put into words how much the support means to us. I know you're all out there with us as we embark upon this new challenge. The important thing is that I feel great. I'm strong and full of fight! I'm energized and focused and ready to roll up my sleeves and kick some ass!
The fact is, the FIGHT rolls on. And that's the best news of all.
After Gamma Knife, we will begin exploring the other options for treatments, moving forward. As I've said before, there is no road map for this disease. We will go on about our business the best way we know how. Ultimately, it's about waking up each day with gratitude and making the day count. Making sure the impact of what we accomplish is in line with the kind of person we want to be.
I'm not always the most religious person and, although I share some very personal thoughts and feelings on this very public blog, I am usually a pretty private guy when it comes to my beliefs. I don't claim to be bible savvy but I swear I can feel the power of the prayers being offered for myself and my family. Something, somehow, in my soul, pushes me every single day to stay both vigilant and calm. I have a necklace that I wear a lot. It looks like a military "dog tag". On one side it has a passage from the bible:
"For God has not given me the spirit of fear; but of power, of love, and of a sound mind."
Be well.
-Brian
1/20/2012 @ 11:30pm
Just getting home from Houston. I've got a million thoughts running through my mind. It's been nonstop for the past 48 hours. Physically, mentally, emotionally. It's the total package at this moment. All I know for sure is I can feel the unrelenting will and desire to fight this disease until it's gone. I will not waiver and I will never, ever stop.
The mass on the side of my face is melanoma. It's growing fast.
I also have two new lesions in my brain. Both of them are larger than any I've had there before.
Today was the first time I've heard a doctor use "operation" and "brain" in the same sentence. It was also the first time I'd ever met this particular doctor. He certainly knows how to make an impression.
The truth is Dr. Papadopoulos is a great doctor. He's apparently criticized often for moving a bit slow and doesn't seem to care too much about his schedule. He was honest and thorough. We looked at images of my brain, comparing the latest scans with previous ones. We did the same with images of my liver.
One of the intriguing findings on the new scans was the fact that my liver appears to be improving. In fact, when compared to scans I had done last March, the lesions are noticeably smaller, even to my untrained eye.
So, some good news, some not so great news. Information, nonetheless.
How can a drug work so effectively in one area but be virtually nonexistent in another?
I don't know. I'm not a doctor or a scientist.
What I do know is it's time to make some decisions. The cancer is not just going to pack up and leave. Unfortunately, that's not the way this works. Feeling good and strong and healthy is a gift. Living carefree and worry free is precious. These are extras. Bonuses. Perks.
The "plan", moving forward, is TBD. (That's not an acronym for a fancy new drug. It's just To Be Determined.) First things first, I'm likely looking at another Gamma Knife treatment to zap the brain metastases.
Yeah, you heard that, melanoma. GAMMA KNIFE! Punk.
Once we stabilize the brain, we'll move toward a new path. The path could involve simply continuing the Zelboraf as is, or possibly combining a new drug (perhaps MEK). There are also new trial drugs available that several of my doctors are really excited about. There may be some surgical procedures. Because the lump on my face is so easily accessible, we may take another stab at a TIL harvest. There's also high-dose IL-2. There's Ipilimumab. There's something called E-7080.
I have options. I have the desire. I have the support. The process of getting the health insurance, getting the appointments, the nearly 400 miles of travel, the 7:00am blood work, the 10:00pm MRI, the emotional weight of sitting in the exam room having no idea what this doctor is about to drop in my lap... I'm tired and worn out now, but tomorrow... tomorrow it's back to business. Tomorrow I get to go help some high school kids play better baseball.
Tomorrow I'll Fight. For now, I'll rest.
-Brian
1/17/2012 @ 10:25am
Here's one for you:
How does 20 minutes equal 4 days?
Take your time. I'll wait. I'm a good little waiter...
Give up?
Ok.
Last Friday was a huge day. After scratching and clawing for weeks and weeks, I was finally in possession of my very own PCIP insurance ID number. The approval process for this wonderful program was actually quite simple. A couple of forms, a letter from my doctor, proof that I had been recently denied by a major insurance carrier. All pretty easy stuff. It didn't take long to gather this information and submit it.
The challenge of this process came down to getting people to respond and then motivating the people to literally push the literal physical file through the literal system.
At around 4:45pm on Friday, I was waiting for the phone to ring. I was trying not to let the horrifying thoughts of another weekend looming enter my mostly-optimistic mind. I knew the processing center closed at 5:00pm. Not 5-ish. 5:00 = ghost town. Tick-tock.
Phone rings.
It's the finish line calling. I've arrived.
After a couple of quick, celebratory cartwheels, it was on to the next call. This time to MD Anderson to schedule the appointments.
No answer.
Then it hit me. The appointment scheduler leaves at 4:30 on Fridays. She also enjoys tuna salad sandwiches, grande skinny lattes, and long walks on the beach. She's married, has 3 beautiful children, and takes an annual family vacation to Cabo. Her husband, Frank, plays in a darts tournament every Tuesday night at a place called "Piggy Pies".
Ok, I made all that up.
But, she does leave early on Fridays. For some reason I called like 4 times in a row, thinking/hoping that she would be sitting there. She wasn't, however. I was going to have to wait until Monday.
All I'm trying to do is schedule tests. I don't even know when I'm going to get to see the results, or the doctor, etc.
I got up around 7:00am yesterday (Monday) morning. I was excited.
It only took a few phone calls to realize that the clinic and the hospital were closed in honor of the MLK holiday.
I wish melanoma worked bank hours.
I got up early again this morning and got ahold of the scheduler. I gave her my info and she (of course) had to call me back so that she could get on the phone to verify the information with the insurance company. Their (the insurance company's) offices are in California. They don't open until 9:00am Pacific Time.
I got the ID number 4 days ago.
I'm picturing some guy hitting snooze for the third time, dreading the thought of getting out of bed and going to work after an awesome 3-day weekend. He has no idea how powerful he really is. He has no idea what's at stake. I wonder if he's the kind of guy that gets to the office and hangs out in the break room waiting for the coffee to brew while he chats with his coworkers about how brutal the traffic was today. It doesn't make him a bad person.
What if his kid gets sick at school and he has to leave to go pick him up.
HAHAHAHA! Shit.
I've heard it's not about the destination, it's the journey that matters most. I've tweaked that a little bit. I say it's not about the result, it's about the process. The process is all that really matters. And the process never, ever ends. Well, at some point it ends. Only then can we measure true results.
This is not a cancer thing. This is a life thing. There are checkpoints along the way that allow us to gauge our direction. But the process marches on.
Life can be like a track meet. Actually, it's like a hurdle race. But instead of us running toward the finish line, leaping over each hurdle as we progress, I think it's more like we're running in place and the hurdles are running at us. If we mistime a jump and fall on our face, we don't get to just sit there until we feel like getting back up and continuing the race. The next hurdle is coming, ready or not.
Might as well just acknowledge it, accept it, expect it, and most of all... appreciate it. When the hurdles stop, the clock stops and the lights go out.
I'll take the hurdles. All day, every day and twice on Sundays.
-Brian
1/8/2012 @ 1:03pm
Hurry up and wait...
Here's what I know.
- I've been approved for the PCIP Plan
- My effective date for benefits was January 1st, 2012
- I've paid my first months premium
- I need a CT scan and MRI, ASAP
What is the holdup?
In order to schedule an appointment, MD Anderson, Texas Oncology, etc. need to verify my coverage. In order to verify my coverage, I need to provide them with an ID number. In order to receive the ID number, someone has to physically collect my information and mail me a letter with the number.
It's not anyone's fault, necessarily. People are busy. The holidays shut down people's work flow. I get it. No one has the urgency that I do to get the ball rolling.
But the ultimate truth is that my file has been sitting on someones desk since December 20, waiting to be processed. That's almost 3 weeks. Cancer doesn't take holidays off.
I'm being patient. I'm being thoughtful and understanding. You realize that anyone and everyone who is calling these people has their own set of circumstances. Everyone's situation is urgent.
Meanwhile, I've got this massive bump on the side of my head. It's uncomfortable and I'm having a tough time sleeping. I wake up because it's throbbing. I stay awake because I can't stop thinking about what the bump is and why it's there.
I wonder how the person who has my file and ID number sleeps at night.
Ok, I'm just ranting. But, c'mon! Send me the number!!!
It's a strange situation I'm in. I could be running full speed into the worst news of my life.
So goes the FIGHT.
I'm excited to announce a new project I'm involved in. Last week, Genentech (the company that developed the drug I take) sent a video production team to our house for a day of interviews and filming. The team is producing a short video highlighting my story, and my experience with their drug and other services. The video will be featured at the company's national sales meeting in Las Vegas, January 29th - February 1.
Lupe and I have been invited to attend the event, which will also include a couple of speaking engagements. I will be speaking to a large group (apparently 3,000+) of Genentech employees from around the world. I will also be participating in a Q & A session with those directly involved with the development and distribution of Zelboraf. It's an incredible opportunity to meet some folks that have committed their lives to the science of curing my disease. I can imagine it will be equally exciting for Genentech staff to meet and hang with someone who is frankly alive because of their work.
We are excited and honored, and looking forward to this experience. Thanks to Snow Companies, InVision, and Genentech Access Solutions for providing us another platform to share our story!
Lastly, we are gearing up for the upcoming LIVESTRONG Half Marathon. Team FIGHT LIK3 HELL! is assembling a great team to participate in the run and to help raise money for LIVESTRONG. The event is scheduled for February 19. We have a team goal of raising $5,000. We definitely have some work to do to get there and would appreciate your help. Please click here and pledge whatever you can. As usual, all proceeds benefit LIVESTRONG programs and services. In short, you are contributing to directly help those affected by cancer. I have been extremely fortunate to have first-hand experience with a number of the services provided by this foundation. There is simply no greater way to support the fight against cancer.
Contribute $75 or more and I'll send you a FREE FIGHTLIK3HELL! T-shirt, a FIGHTLIK3HELL! bracelet, and a LIVESTRONG bracelet.
Much love to all!
-Brian
12/30/2011 @8:45pm
I've been down this road before. I'm prepared. I'm as strong today as I've ever been. EVER. I'm living this fight, every day. And let's not forget that this is a fight.
It's not Love. Hope. Laugh at Cancer!
Nor is it Love. Hope. Fun, Fun, Fun!
And it's definitely not Love. Hope. Fight when you want to!
It's FIGHT. LIK3. HELL! And the bell just rang again. It's on!
I went to see a specialist yesterday about the enormous lump growing out of the side of my head. He believes it's melanoma. There is also a mass on the back of my neck. He thinks that's cancer too. New scans and tests will prove this to be true, or perhaps untrue. I'm looking to get the tests done early next week. If these two spots are melanoma, it's a pretty safe bet to say the pill (Zelboraf) may no longer be working for me.
I knew this was a possibility when I started taking this drug. And wether I've now stopped responding to the pills or not, it's a reminder of how fortunate we are for the simple, most basic things in life. This pill has given me a lot to be grateful for. I've been on the drug for nearly nine months without any significant issues. This pill allowed me to pull the tubes out of my arm and walk away from the chemotherapy that was punishing my body from the inside out. This pill allowed me the opportunity to get back on the baseball field to do what I love to do. This pill as awarded me a "normal" life, while fending off a disease that has no other purpose but to kill me. I'm grateful and blessed to be so lucky.
I'm not going to speculate on what would be next but I can say with certainty, there are options. Several options, actually. With some very promising potential. And I have an incredible team of doctors that are ready to re-arm, reload, and re-kickass! I have so much love and hope and support in my corner, we will not be afraid.
And as the end of one chapter possibly nears, the beginning of another is falling into place. It's something called Health Insurance. Apparently, it offers assistance when it comes to medical related expenses and services. Yeah, it sounds really cool and it's something I haven't had in quite some time. I believe I've been in the middle of a nuclear war with nothing but a pocket knife. Turns out, the tide is turning. I got word today that I've qualified for a federal health insurance plan.
I'll elaborate more as I learn it.
As we wind down 2011, I'm thankful for the incredible support I've received from so many of you out there. I'm thankful for a (mostly) healthy 2011. The new year will, no doubt, bring it's fair share of challenges but I am strong and eager to overcome the obstacles.
Please have a safe and happy new years!
Much love!
-Brian
12/27/2011 @3:35pm
I've been down this road before. I'm prepared. I'm as strong today as I've ever been. EVER. I'm living this fight, every day. And let's not forget that this is a fight.
It's not Love. Hope. Laugh at Cancer!
Nor is it Love. Hope. Fun, Fun, Fun!
And it's definitely not Love. Hope. Fight when you want to!
It's FIGHT. LIK3. HELL! And the bell just rang again. It's on!
I went to see a specialist yesterday about the enormous lump growing out of the side of my head. He believes it's melanoma. There is also a mass on the back of my neck. He thinks that's cancer too. New scans and tests will prove this to be true, or perhaps untrue. I'm looking to get the tests done early next week. If these two spots are melanoma, it's a pretty safe bet to say the pill (Zelboraf) may no longer be working for me.
I knew this was a possibility when I started taking this drug. And wether I've now stopped responding to the pills or not, it's a reminder of how fortunate we are for the simple, most basic things in life. This pill has given me a lot to be grateful for. I've been on the drug for nearly nine months without any significant issues. This pill allowed me to pull the tubes out of my arm and walk away from the chemotherapy that was punishing my body from the inside out. This pill allowed me the opportunity to get back on the baseball field to do what I love to do. This pill as awarded me a "normal" life, while fending off a disease that has no other purpose but to kill me. I'm grateful and blessed to be so lucky.
I'm not going to speculate on what would be next but I can say with certainty, there are options. Several options, actually. With some very promising potential. And I have an incredible team of doctors that are ready to re-arm, reload, and re-kickass! I have so much love and hope and support in my corner, we will not be afraid.
And as the end of one chapter possibly nears, the beginning of another is falling into place. It's something called Health Insurance. Apparently, it offers assistance when it comes to medical related expenses and services. Yeah, it sounds really cool and it's something I haven't had in quite some time. I believe I've been in the middle of a nuclear war with nothing but a pocket knife. Turns out, the tide is turning. I got word today that I've qualified for a federal health insurance plan.
I'll elaborate more as I learn it.
As we wind down 2011, I'm thankful for the incredible support I've received from so many of you out there. I'm thankful for a (mostly) healthy 2011. The new year will, no doubt, bring it's fair share of challenges but I am strong and eager to overcome the obstacles.
Please have a safe and happy new years!
Much love!
-Brian
12/27/2011 @3:35pm
We're taking it back to the Old School today. Just a simple, straight-forward update regarding... wait for it... MY HEALTH! You remember, How's Brian?
To be fair and honest, Brian is a little uneasy, mildly concerned.
Why?
Well, here it goes...
My face hurts. Like, literally. I have a large lump on the left side of my head, just in front of my ear. It's big and it's definitely solid. The mass has been there for probably 2 months now. It is uncomfortable, slightly sensitive to the touch, and at times downright painful (particularly when I'm trying to sleep or putting on a tight collared t-shirt).
What is it?
It appears to involve my parotid gland, which produces saliva. I have read that swelling of this gland can be caused by a number of things, but masses there do not usually present cancer. This is all fine and dandy, but I believe my situation is, frankly, not-so-typical. Normally, I would just schedule an appointment with an ENT specialist and go from there. Turns out those kind of folks want you to have insurance before they invite you over.
A big part of living with cancer is that every time something happens, my first reaction is "Oh shit, it's cancer!" I can sneeze really hard and feel something in my side... it's cancer. I wake up with a sore back... it's cancer. I have a headache, a cramp, a fever, or feel nauseous... cancer, cancer, cancer, cancer!
I suppose I have to feel this way. I'm programmed to be cautious. The key is to stay ahead, in front of the action. I have to dictate what's happening in my body, not just stand by and react.
The problem is, that's the problem.
Because the clinical trial for Zelboraf ended, I haven't had a CT scan or MRI since September. This is anything but ideal. The truth is we are spread very thin financially and don't have many options for getting these tests at the moment. But they are critical to the treatment on my disease.
During our recent visit to LA, I had an appointment with Dr. Hamid at The Angeles Clinic. Because we don't have access to new scans, it was a simple exam and consult. We also did blood work.
Dr. Hamid is concerned about the bump on my face. Mostly, he's concerned that it has increased in size. Although it's not clear wether the bump is cancer, or cancer-related, or a side-effect from the drugs, etc., the fact is that it's a concern and we don't have a definitive answer. He wants scans. He wants to know. I'm with the doctor on this one.
BTW, blood work was "excellent" as usual.
Are we all just paranoid? Perhaps. But, it's cancer so whatever! Not knowing is not an option.
To add to the fun, I was pounded by a pretty heavy flu bug over the past week or so. Fever, chills, fever, chills, body aches and pains. I couldn't get out of bed for a few days. I was truly pummeled.
Was it the flu or was it cancer? The answer is, it went away.
Like any puzzle or mystery, the key is the solution. For now, my best bet is the "Pre-Existing Healthcare Plan" that is a component of the infamous ObamaCare Package. It's a full-coverage, comprehensive health plan that will provide me with necessary services to manage my health. It's reasonably priced (around $200 per month) and will not restrict me because of my pre-existing condition.
I applied for the program back in November. It's a federally run program. Do I need to say more?
It just takes time. And patience. And understanding. And more patience. And hoop-jumping. And bad music while you're on hold.
- Side note: Isn't it great when people ask, "Do you mind if I put you on hold?"
So, for now I wait. On hold, but not even on the phone. I hope to get the magic letter this week that says I qualify for the program.
It never stops. It never quits. It's a constant battle.
The only option is to FIGHTLIK3HELL!
-Brian
12/6/2011 @ 3:20pm
What is FIGHTLIK3HELL? That is the question of the day.
For those who have followed my journey from the beginning (I like to call it B.C. and A.C., Before Cancer and After Cancer), you'll know that the term Fight Like Hell! originally appeared on this website just days before my first appointment at MD Anderson last November.
It's important to understand that this website was launched basically out of sheer necessity. My family and I were scrambling to provide family and friends with accurate, current information regarding my diagnosis, treatments, and overall condition. If you can imagine the magnitude of trying to manage the flow of information, when things were changing by the minute, on a topic that I knew nothing about, while having absolutely no clue what was going to happen next.
It was overwhelming. The idea of starting a blog to communicate was an absolute no-brainer.
Being a bit of a creative guru, I obviously wanted the site to have some personality and visual appeal. I did what I could with extremely limited knowledge of web design and without the luxury of much time. One of the first components of the site was the heading of Love. Hope. Fight Like Hell! on every page.
This message just seemed to summarize my vision for the website. In many ways, the message defined my journey. It brought together what I believed to be the 3 key elements for success against cancer. And not just for me (the cancer fighter). I felt like the message outlined a purpose for anyone who might log on and share in the fight. I remember that first publish. When the site officially went live. My mom called me and said she loved the message of Love. Hope. Fight Like Hell!
Not long after, I was in the shit. The battle came to life and something really interesting and unexpected began to happen. I started to realize that the site was becoming a source of inspiration for me. As more and more people began to find the site, I started receiving these incredible messages of support from everywhere. As it turned out, the Love and the Hope were empowering me to Fight Like Hell!
At some point during the chemo treatments, surgeries, etc., someone commented about the term Fight Like Hell being tied to the origins of LIVESTRONG. I found it to be ironic as the organization was in the process of producing a documentary featuring my journey and experiences as a newly diagnosed cancer fighter. The camera was capturing the essence of what it meant to Fight Like Hell! And not just a recollection of what it was like. It was happening right in front of our eyes. In the doctors offices, in the chemo ward, in the personal and private spaces. But this is what the Fight really means. It's literally life or death. We're not talking about practice. It's not a TV show. It's freaking CANCER!
I later learned that Fight Like Hell was a term that Lance Armstrong embraced when announcing to the world that he had cancer. It was an interesting and powerful connection. I totally got it! ALL CANCER FIGHTERS GET IT! When someone tells you that you have cancer, you are faced with a fundamental decision... give up OR Fight Like Hell! I think it's pretty clear which path I chose.
I've used the term Fight Like Hell! a lot during my battle with cancer. It's become synonymous with my story. This summer while traveling with my baseball team, fans in other cities would yell at me during games, "Hey, Rose! Fight Like Hell!" I hear it from everywhere. Emails, cards, phone calls, Facebook comments, and from people I meet. Everywhere.
I don't own the phrase. It's not anyone's property or possession. It's a motto. It's a statement.
In fact, Fight Like Hell! belongs to everyone. We all have our fights and our battles with adversity. Mine just happens to be cancer. It doesn't make me special or entitled to something different than everyone else. Everyone has struggles and moments when that little voice shouts out loud "Fight Like Hell!" Everyone can relate.
People have asked me recently why I've changed the spelling to Fight Lik3 Hell! It's pretty simple, actually. The 3 is the uniform number I wear in baseball. I changed my number this past season to number 3 to embrace the 3 key elements of my life - Love. Hope. Fight Like Hell! I wanted to personalize the motto to fit my personal story. Lupe also likes it because she says that the K and the 3 together resemble a heart. Well, I K3 You baby! :)
I plan to continue sharing my story and my message to anyone who cares to listen. FIGHT LIK3 HELL! is a simple reminder that there are challenges and moments in life that require a little extra to perceiver. Currently, my main goal is to stay healthy and continue to kick cancer's ass. I also want continue to grow the branding and continue to spread the message of Love. Hope. Fight Lik3 Hell! I have speaking engagements, appearances, interviews, and a variety of other exciting opportunities lined up in the coming months and I plan to utilize these moments to highlight my story.
But, it's not all about me.
I've been so incredibly fortunate to have an amazing amount of love and support to help me during my time of need. I am going to embrace every moment that I get to help others discover the power that I have felt and encourage them to find their own purpose with love and hope. And once they have found that purpose, to FIGHT LIK3 HELL! to get it.
In fact, I'd like to hear what FIGHT LIK3 HELL! means to you! Please leave me a comment here and share your definition of FIGHT LIK3 HELL!
Lastly, I just want to clarify something to hopefully avoid any future confusion. When you see FIGHT LIK3 HELL!, what you are seeing is me. Others also utilize the concept of Fight LikE Hell, and rightfully so. But when you see that 3, you know that this is about Brian Rose. I'm not selling Nike or LIVESTRONG products. I love them and appreciate them and I'm pretty sure they like me too, but I don't work for them or represent them and they do not endorse FIGHT LIK3 HELL! We are not affiliated, period.
Lupe and I are looking forward to our California trip next week. We have a full schedule including a visit to The Angeles Clinic for new scans, our wedding shower, and lots of quality time with our friends and family.
I appreciate the continued love and support! A special thanks to all who have ordered their new FLH t-shirts! I hear they make a great holiday gift!
Love to all and FIGHT LIK3 HELL!
-Brian
11/23/2011 @ 1:04pm
I have to admit that Thanksgiving was able to sneak up on me this year. I know it's November (or MOvember, more specifically). I know that Christmas is coming because I can't turn on the TV or radio with out everyone reminding me of how INSANE their prices are this weekend. I am seeing the Food Network specials on preparing the ultimate feast.
All of these things, collectively, lead me to believe that Thanksgiving is indeed upon us and the holiday season has begun.
If you scroll back in this blog to a year ago, you'll see that my focus was not on turkey and stuffing. In fact, last year my Thanksgiving dinner likely consisted of something like chemo and crackers. I'm not feeling sorry for myself here, I'm actually just pointing out why I'm so excited for the holidays this year.
They say you don't always know what you've got until it's gone. I'm inclined to agree.
Lupe and I where talking recently about how the holidays seem to create so much chaos. People really and truly lose their minds with the shopping and eating and drinking and traveling, etc. We stress out. We freak out. The holidays have the power to dominate our lives in so many ways, emotionally, physically, mentally. It begs the question: What is the "holiday spirit" in 2011?
Anyone who knows me, or reads this blog, should know that I'm generally a pretty positive guy. I'm not just going to come on here and bash anything or anyone.
Well, I bash cancer. But that's different.
Anyway, I'm just going to throw this out there... It sure feels like things are pretty screwed up in our country today. AND it sure seems like we know how to ruin simple things in life that used to be "the good stuff". It's painful to admit but our society has managed to dilute the very substance that made the holiday season special.
Maybe you already knew this. I have a tendency to be a little behind on the whole "recognizing socially driven assaults on perfectly awesome traditions" areas of life. Since when is the JOY something that is unwrapped? Since when does the LOVE require sitting out in the cold all night waiting for the "20% off for 30 minutes SALE"? Since when? Since when? Since when?
What the hell are we doing? We're arm-wrestling for parking spots. We're maxing out our credit cards. We're setting ourselves up for disappointment and inadequacies.
Deck the halls with bows of stress and debt. And pass the heart attack, please.
Is it ok? No. Will it change? Probably not. Why? Because our society is all about polishing up the crap and pretending it's not there. We're all about air freshener. Masking the problem and convincing ourselves that it's under control.
Life is too short to spit shine dog poop. It looks like poop because it's poop! When we spray it with Fabreze, it just smells like flowery poop. It's smells like poop because it's still poop! All dog poop stinks! Not just your neighbors or friends dog poop. If you don't like the poop, CLEAN IT UP and GET RID OF IT! Stop pretending it's not there. And if you're tired of cleaning up poop, get rid of the dog!
Action: The fact or process of doing something, typically to achieve a goal.
Change: Make or become different.
I think there is a point in all of that.
I'm very excited to be here and to be able to enjoy Thanksgiving with my family. It's beyond thankful. It's genuine gratitude. And it's not just on November 24th.
I'm grateful to have the most incredible woman I've ever known by my side. And (what a bonus!) she actually likes me too :)
I'm grateful for the overwhelming amount of love and support I've been blessed to have throughout the most challenging year of my life.
I'm grateful for the opportunity to reach and encourage others who are FIGHTING LIKE HELL!
SAME FIGHT, DIFFERENT SHIRT
I've got some really exciting plans coming to life. I'm not quite ready to make any formal announcements yet, but I can say that I'm about to take the FIGHT to a whole new level. I've been on defense for a while now. The time is coming to launch a full blown attack on cancer and I intend to firmly plant my flag in the ground!
I've been putting together a team (imagine that, coach!) to help me and I'm excited at the progress. More details soon!
For now, please check out my new shirts and maybe pick one up if you like them. I have 80 shirts ready to ship. Please help me spread the word by passing along this site to anyone you can.
Lastly, a shout out to Rob in LA who just finished his first round of biochemotherapy. Thoughts and prayers, strength and courage to you and your family, Rob!
Many thanks to all for the love and support! FIGHT LIK3 HELL! and have a great THANKSgiving!
-Brian
11/15/2011 @ 1:15pm
I'm sitting here absolutely blown away by the recent advancements in the treatment of melanoma. The HOPE is definitely alive and the science world appears to be close to capturing this fugitive disease.
If you're anything like me, you probably subscribe to daily Google Alerts to make sure you have the latest, most current information pertaining to melanoma and mutated BRAF genes.
What's that, you say? Ok, ok, I'm the nerd.
Anyhow, the articles that pop up can be anything from scientific blurbs containing words and rhetoric that usually gives me a headache, to Wall St. investment guru's explaining why you should be investing in the companies developing these new drugs. Both of those could be considered promising signs.
But then, occasionally, I stumble upon some magic. The magic might consist of new findings or reports indicating increased survival rates, or maybe some incredible stories of individuals experiencing amazing results with a new treatment.
The true beauty is that there is something. Anything. There is news. People are talking. Wheels are turning.
However...
I read an article last week that suggested melanoma is now the fastest growing cancer in the US. The incidence rates are climbing every year. More and more Americans are being diagnosed than ever before. Alarmingly, women under 35 appear to be the most affected segment and melanoma is officially the most prominent cancer amongst young adults in the US.
Friends, we have to get smart about this. I know I can't just hop on a soapbox here and change the world with this blog, but something has to give. I'm not preaching, I'm trying to save your life. And your children's lives.
Having cancer is freaking AWFUL! Yeah, I might be feeling ok right now, but that can change in the blink of an eye. I wake up thinking about cancer. I eat thinking about cancer. I watch TV thinking about cancer. I fall asleep thinking about cancer. It's not fun. It's no bueno!
Wear sunscreen! Teach your kids good habits! STOP SMOKING! Be mindful of what you eat! Exercise! I probably like you and plenty of people in your life love having you around, but you are not special. Cancer doesn't give a crap about how bitchin' you are. And trust me when I tell you, it's not going to politely ring your doorbell and ask for permission to come in. In fact, you may come home from work one day and to find it sprawled out on your couch with a bag of Cool Ranch Doritos. And then you realize that it's not just visiting, it's moved in and unpacked. No, wait, it actually IS your house. YOU are now the Dorito!
Don't be a Dorito!
Sorry for yelling.
On a softer note, Lupe and I are volunteering a few hours tomorrow at Mellow Johnnys. We will be building bikes for kids as part of the Bikes for Kids Austin event. We are thrilled to be able to contribute our time to this awesome cause. It turns out that kids really like bicycles! :)
If you haven't already, please click over to the store and grab a couple of HowsBrian/FIGHT LIKE HELL bracelets. They're $5 and we have lots of them ready to be shipped!
Also, please continue to send your photos wearing your HowsBrian t-shirts. I'm putting them up on the MISSION page. Check it out!
Thank you for the love and support!
-Brian
11/6/2011 @ 11:45pm
The Tour de Gruene was a huge success!
We arrived in the sleepy town of Gruene around 7am. It was about 38 degrees outside and the place was buzzing with activity. It was clear that this tiny town was at max capacity. There were people everywhere, including a swarm of visitors at the legendary Gruene Hall picking up their goodie bags.
Chris and I finished our registration, geared up, and headed to the starting line.
As the sun began to rise, the excitement was building. We took off around 8:30am, passing the glowing Gruene water tower, and away we went on the 31 mile tour.
The course was gorgeous. For the next 2+ hours we peddled our way along the Guadalupe River with over 1,500 other riders. The air was cool and crisp as the miles went by. I felt strong. And Chris was simply dominating.
After a quick restroom stop at the halfway point near a city called Sattler, we were on the move again. The second half of the ride was where the real challenge began.
31 miles was more than I've ever ridden on a bicycle. Prior to this event I'd only ever gone 27 miles. There comes a point (when you ride a decent distance) where your body begins to ask, "What the hell are we doing?" I believe this moment came somewhere around mile 28ish. I was beginning to wear out.
The most challenging uphill climbs on this course came in the last couple of miles. People around us were suffering as they inched their way forward. I was making it, though. Slowly, but surely. Steady.
The final climb was crushing. The road was lined with spectators cheering us on. Most of the riders got off their bikes and were just walking. I definitely thought about getting off and walking. It was pretty brutal and my legs were simply shot. I was literally thinking "one more pedal and I'll hop off".
But, I couldn't quit. I refused to give in. I could hear powerful voices in my mind telling me to keep pushing. Yes, voices. No, not the "I've gone loony" voices. They were the voices of my mom, of Lupe, of my family and friends driving me to keep going. The power to continue came from my mind, not from my legs.
That's FIGHT LIKE HELL!
As we crossed the finish line, I was so proud. It was an incredible accomplishment. I had pushed myself to the edge and kept going.
We snapped a couple of photos, did a quick interview for the rides website, and loaded up the car to head home. We came. We rode. We left.
Oh... and we kicked some cancer ass! That's just how we roll.
Other Stuff
- Hope you like the new site layout. I thought it could use a new look. I'm pretty happy with the result.
- If you have a HowsBrian t-shirt, please take a photo wearing the shirt and send it to me at coachrose6@hotmail.com. I've began posting the pics on the "MISSION" page. Thank you!!!
- I'm working on some new Fight Like Hell products. I will have more information soon.
Thank you for the love and support!
-Brian
11/1/2011 @ 2:38pm
Team FIGHT LIKE HELL rides again!
This Saturday, team FLH is headed to the city of Gruene, TX (pronounced "Green") for the 28th Annual Tour de Gruene. We'll be back on the bikes to tackle the 31 mile course which meanders along the tree lined banks of the Guadalupe River. The event proceeds benefit the Sally Kingsbury Knock Out Sarcoma Research Foundation.
While building up for this ride, I have done some research on sarcomas to get a feel for the purpose of the event. Sarcomas are actually tissue-based cancers, including tumors of the bone, fat, and muscle. The disease is rare, with approximately 15,000 new cases reported each year in the US. Sarcomas represent roughly 1% of the nearly 1.5 million new cancer diagnosis in the US every year. That's 1,500,000 NEW DIAGNOSIS EVERY YEAR! In the United States.
Team FIGHT LIKE HELL is proud and honored to be participating in the event as we continue our battle, by helping others.
MOVEMBER!
I'm excited to announce that the strange, discolored situation above my top lip is not a result of bad hygiene. What it is is the beginning of a great mustache. And what that means is that it'sMovember. Ladies, sit back and enjoy the show!
While it's very liberating to celebrate the legacy of such brave patriots as Tom Selleck, Burt Reynolds, and Borat, we must not forget the real mission of Movember. It's all about spreading awareness for men's health and cancers that affect men. It's been reported recently that cancer is now the leading cause of death for men in the US, accounting for greater than 25% of deaths. Grow an awesome 'stache and tell people why you're doing it!
I have some exciting announcements coming in the next couple of weeks. I've been working with some great people on some awesome "projects" and can't wait to unveil them soon.
Thanks to all that continue to support me and my Fight!
LOVE,
Brian
10/17/2011 @ 1:30pm
What an amazing weekend!
I'm running out of adjectives to describe the LIVESTRONG Challenge we just experienced here in Austin. It's difficult to explain the power, the magnitude of surrounding yourself with thousands of people, from all over the country (and the world), united for and by a single purpose.
My experience started on Friday morning when I arrived at the LIVESTRONG Village downtown. The event partners and sponsors were already in full swing setting up their booths and displays. The energy was building. I grabbed an iced coffee from Juan Pelotaand headed over to the packet pickup area.
An hour or so later the Village was buzzing with supporters, Challenge participants, volunteers, and others. It was organized, efficient, and well executed.
Over the next 6 hours, I was posted next to the LIVESTRONG Tribute Wall. I met cancer survivors, sons, daughters, moms. dads, sisters, brothers, aunts, uncles, friends, and everything in between. I hugged, shared stories, and even met with some folks that were familiar with my story. We were all connected by cancer. It was special. Watching all of these people come and go as they checked in for their run or ride, knowing that each of them had a similar (yet unique) purpose for being there... it was a actually quite incredible.
I returned to the Village on Saturday for a couple more hours of volunteering. It was more of the same.
Sunday was our big day! The plan: ride the 20 mile course and live to brag about it.
Team Fight Like Hell took our positions. Chris, Parke, Joe, Erica and I on the bikes and Lupe, Mom, Kara, and Jada on the finish line.
After some technical difficulties were addressed (Parke and his three flat tires... yes, THREE... before the ride started!), we were off and riding. Being out in the beautiful Texas Hill Country, on a bike, surrounded by friends and thousands of others, is just flat-out good for the soul. Doing something healthy and challenging for the benefit of so many is simply euphoric!
We completed the ride as a team, with Lupe handing me the traditional yellow rose as I crossed the finish line. I felt so grateful. Grateful for my family and friends, those who support me and my personal fight. Grateful for the fact that I could get on a bike and finish a 20 mile course. Grateful for the generosity of all those who donated and helped us raise over $5,000 for LIVESTRONG. And grateful, of course, for all those who made the event possible.
After the ride, we all hung out a bit and celebrated our team's success. I also got a chance to catch up with Doug (@LIVESTRONGCEO) for a bit at the finish line and watched as Lance Armstrong came flying past us. What an incredible day!
QUICK NOTES:
- Lupe handed out 2 yellow survivor roses on Sunday; one to me, one to Lance. Awesome!
- My team and I started after Lance and finished before him! The fact that we rode 20 miles and he rode like 1,000 is irrelevant.
- The event raised over $2.5 million for the fight against cancer. Over 4,300 runners and riders participated.
I'm off to Los Angeles tomorrow evening for another appointment with Dr. Hamid. It's a check up, no new scans until November. Feeling great! Blessed to continue living, strong and happy!
Much love to all!
-Brian
10/6/2011 @ 1:34pm
I'm stepping out of the typical "update" box today. I think the time has come to introduce some of the things I'm doing (other than pills and surgeries) to combat melanoma. This is not meant to be medical advice and there is no hidden agenda here. The fact is, I feel like I'm creating the ideal environment for my body to focus it's optimal attention on battling the cancer. I've been meaning to blog about this for some time now, especially considering how well I've been feeling.
I'm definitely not a doctor, but over the past 18 months I have come across an overwhelming amount of information that has led me to one clear conclusion; cancer really sucks! Divine, I know.
On the other hand, there is another bit of truth that some might not know... our bodies are amazingly well equipped to handle just about anything.
At some point, in my "rubber-neck" of a mind, I began putting 2 and 2 together. Over the next couple of updates, I'm going to attempt to describe each of the 4 elements of my assault on cancer: Diet and Nutrition, Physical Exercise, Power of Purpose, and Relaxation. I don't claim to be an expert but here it goes...
Step 1: DIET AND NUTRITION
One of the simple facts about melanoma is that it thrives in a weak immune system. This is the theory behind IL-2 and interferon based treatments. These are considered immunotherapies, designed to boost and enhance your bodies immune system. In my humble opinion, there is just no way that these enormous pharmaceutical companies, with all of their studies and research and intelligence, would spend the time, energy, and resources to create drugs that boost our immune system unless boosting our immune system played a significant role in fighting melanoma.
And if some is good, more is better... right?
After my chemo sessions were finished (and food no longer tasted like cardboard), I began focusing on what I could do to boost my own immune system.
I started to change the way I thought about food. I researched different ideas about what to eat and why. Ultimately, I stopped worrying about how things were going to taste and started to judge food solely by it's impact on my body. What I found was that the better I ate, the better I felt. And the better I felt, well, the better I felt!
I stopped eating red meat, pork, chicken, and turkey. It's not political. A doctor didn't tell me to. I don't feel sorry for the animals. It's not overly complicated. Most of the meats we eat are loaded with hormones, additives, steroids, antibiotics and other crap that I cannot readily identify. I've read plenty of reports that directly connect red meats to cancer. I made my own decision to cut these items out of my diet. Animal fats are difficult to digest and have things in them that I probably don't want to eat. Period.
And yes, I cheat. I see an In & Out and I lose control. So what?
Next, I cut out as much processed food as I possibly could. My thought was that I wanted to eat foods that were as close to their original form as possible. Preservatives are designed to prevent foods from breaking down. When I eat, I don't want my body to stress itself out trying to break down what I just put in it. Instead of slowing things down, my thought is to simply fuel my body to continue it's main objective which is kicking cancer's ass.
I stopped drinking alcohol for a couple of reasons. First, I have disease in my liver. Again, I'm not a doctor, but it only made sense... if my liver was already in danger, why do it any more harm? Secondly, going out and getting hammered isn't quite the kind of FIGHT LIKE HELL that I'm looking for. Alcohol is fine and dandy for responsible adults. It helps white people dance, etc. No worries, no judgments. It's just not in my plans for now.
Another main goal was to eliminate unnecessary sugars and salts. Did you know that when you do a PET scan to measure the activity of cancer tumors, they inject you with a radioactive sugar? Sugar because it somehow "sticks" to the cancer, radioactive so it shows clearly on scans. Cancer attracts sugar. Sugar likes cancer. This isn't freaking Love Connection here!
So, after cutting all of these things out of my daily routine, I found myself feeling really... hungry!! Here's what I do now:
In the morning, depending on what's going on, I try to start off with an Emergen C drink. It's a blast of vitamins and minerals. It's quick and painless.
Next, I'll mix up either a protein shake or fruit smoothie. These two are so quick and so easy. If you think you don't have time to do this, your priorities may need adjustment.
Here's the protein shake: take 4-5 ice cubes, 3 oz of water, 1/3 cup raw oatmeal, 2 spoonfuls of natural peanut butter, 2 spoonfuls of flax seed, a scoop of protein powder, and a banana. Put it in your blender. Hit start. Wait about 30 seconds. Stop the blender, take off the lid and drink it. Rinse the hopper and it's ready to go for tomorrow.
Fruit smoothie: take 4-5 ice cubes, add fresh or frozen fruits (I like bananas, strawberries, blueberries, and oranges), add an ounce or two of whatever fruit juice you have. Blend it up for 30 seconds. Stop the blender, take off the lid and drink it. Rinse the hopper and it's ready for tomorrow.
Breakfast done.
I'll be hungry again soon because my body isn't laboring to digest what I just put in. That's the way it's supposed to be! I'll snack on fruit or almonds to hold me over until lunch time.
The rest of my intake throughout the day consists of more fruits, fresh veggies (salads, etc.), fish, and maybe another protein shake. I'll eat pasta and other carbs. Again, the focus is on what the food is doing FOR me.
I always try to mix in a shot of Xyngular Global Fruit Blend and a Xypstix packet which includes aloe, usually in the afternoon. These guys are loaded with antioxidants and a long list of healthy nutrients.
I also take these supplements:
Milk Thistle - promotes healthy liver function
Calcium w/ Vitamin D - Calcium because I want strong bones. You can Google "Vitamin D melanoma" and go from there.
I have also bought into the benefits of turmeric.
So, there you have it. Just some basics on some of the things I'm trying with my diet. Lupe and I go to the grocery store often. It's not more expensive to eat healthy. It just takes a little more planning and a little more time because you actually make your own meals. And, if course, there is some discipline to it. I'm to the point now where I don't even crave crappy foods anymore. The best part is, healthy eating can't do anything but good. Empower your body (and all of its greatness) and it will work for you!
-Brian
9/23/2011 @ 4:17pm
At the end of the day, I just want to be ok. I want to be around for a long time. Sure, I'd love to inspire or maybe encourage or educate. I enjoy writing and sharing my story with others. I hope I'm lucky enough to make a positive impact. I feel a sense of purpose in this fight, like there's a reason for all of it.
But make no mistake... I want to live!
Advanced stage melanoma kills people. In fact, it kills most people that get in it's way. It kills lots of people who don't want to die. People with families. Young people, old people. People that don't even know it's there. People that fight it with everything they have until their last breath. I know I'm not special. There's not some magical sheild hovering around me that creates an immunity to the powerful grip of this disease. It's cancer.
I have cancer.
I think about it all the time. Like, ALL the time. If I'm being honest, maybe once every 30 seconds? Probably more even. It's not a panic. It's just persistent.
It's almost like trying to remember the name of a song or the punchline of a joke. It just permeates. It lingers. Except you don't dig deeper to try and find the answer, you just try to soften the anxiety by focusing on positives.
The positives are always there. You just have to want to find them.
In my situation it's a no-brainer. Given the choice of thinking about life or death, I choose life.
Death can take a number and get to the back of the line. Way back there.
No cuts!
And no talking either! I'm too busy living to hear your punk-ass anyway!
It's been nearly 16 months now since my first diagnosis. Nearly a year since it became "Stage 4". I'm learning to cope with the uncertainties that come with having cancer. I have the right people around me. Many of you that read this blog have become a huge source of hope and support. It means a lot to me. And I know it means an awful lot to Lupe and my mom and family as well.
The reality check when it comes to my battle is probably the same as with many other cancer fighters; CT scans.
The scans themselve are impartial. They always tell the truth. You love them, you hate them. They don't care.
The reality set in for me on Wednesday afternoon as I was waiting for Dr. Hamid at the Angeles Clinic.
Do I get to continue thinking about wedding plans with Lupe, getting back to my baseball lessons, riding my bike, spending quality time with my friends and family? Or am I back to the grind of accepting another failed treatment and figuring out what to do next to keep the melanoma at bay?
The scans are powerful little suckers!
Dr. Hamid had good news.
I'm continuing to respond well to the drug. The tumors are stable. There is nothing new or unusual. My brain is stable. The disease is still there but it's not progressing. I'll follow up again in about a month. New scans in 2 months.
And so goes the battle. Much ado about nothing? Perhaps. But in this fight, nothing can really be something.
Special hello to Raquel and Nancy! Hope your visits to Austin are a blast!
Love to all!
-Brian
9/16/2011 @ 1:52pm
Ok, brace yourself. I know it's only been a week since my last post. This kind of behavior can only mean one thing... baseball season is over.
Yes, it's true.
On Sunday, I will fly back to Los Angeles for my appointment at The Angeles Clinic. The appointment is significant for several reasons. First, it officially marks the end of my participation in the clinical trial for the drug now know as Zelboraf. I began this trial in April and have so far shown a positive response to the drug for the past 6 months. Because of the success of the drug, the FDA formally approved the pill for open use. Now that the pill is available by perscription, the trial is concluding. Because I remain without health insurance, I will continue to receive the drug through a program offered by the drug manufacturer, Genentech. However, my new hurdle will be figuring out access to CT scans, MRI's, and neccessary doctor visits among other things.
Speaking of scans, this visit to LA will also include new diagnostics. It's report card time. I normally try not to pay much attention to statistics but there is a general notion that the median response time for Zelboraf is somewhere around the 6 month marker. The truth is that this drug is still so new that predicting how long the positive response will last is virtually impossible. Exhibit A: Heather.
Nonetheless, this set of scans feels significant. Then again, so did/do all the rest of them. So, I guess it's not that significant. Or wait, it is significant. Hell, I'm confused. Whatever.
TEAM FIGHT LIKE HELL!
As previously noted, I plan to participate in next months LIVESTRONG Austin Challenge. Somehow we have now create a team of participants, including Chris (Benjamin) and a few friends here in Austin. We will be riding the 20-mile course. Besides promoting exercise and healthly living, the main focus of this awesome event is to raise funds and awareness for the fight against cancer.
Although LIVESTRONG waived my fundraising requirement (the event requires participants to raise at least $250 in order to ride), I decided to give it a shot and see what I could muster up.
On Tuesday, I opened up my personal fundraising page with a goal of raising $250 by October 16th. I posted a link on my Facebook page to spread the word and met the $250 in about 10 minutes.
Oh yeah!
In the past 72 hours I have raised the goal 3 times. As of this moment, my total sits at $750. I'm now pushing for an even $1,000. In addition, team FIGHT LIKE HELL (ok, me and Chris) has raised a total of $1,500. Our team goal is to raise $2,000 before the ride next month.
A HUGE thank you to everyone who has pledged so far! I have personally witnessed the impact of LIVESTRONG and am proud to be able to contribute to such an incredible foundation. If you're considering a donation, do it! $1, $5, $20... it's not a matter of how much or how little you pledge. It's about getting in the FIGHT! Cancer affects everyone in some capacity, at some point. If you can spare a few bucks, click here.
I'm looking forward to picking up my new bike this weekend and Riding Like Hell!
A really good friend of mine ordered some FIGHT LIKE HELL/HowsBrian.com bracelets. They're freaking awesome! I have black ones and red ones in three different sizes. If anyone is interested in the bands, please send me an email at brianrrose@hotmail.com.
Love to All!
-Brian
9/9/2011 @ 8:02pm
Home sweet home!
After another awesome baseball season in Wichita, Lupe and I packed up, said our goodbyes, and hit the road back to Austin. Such a bittersweet moment for both of us, for sure. Here is a short list of highlights from our nearly 5 months in Kansas:
(In no particular order)
- I made it back onto the baseball field less than 3 months after my final round of biochemotherapy and less than 3 weeks after my last Gamma Knife treatment
- I made it back onto the baseball field, period
- Lupe and I were together for the full season, surrounded by some of the most incredible people we know
- We made it through the full season without any unexpected developments or melanoma-related issues to speak of
- My health actually improved throughout the season per CT and MRI scans
- The clinical trial I participated in involving the PLX-4032 (now Zelboraf) continued to impress and the pill was formaly approved by the FDA
- Most people think that the pill improved my health but I argue that being back on the baseball field is the best therapy for me
- I formally proposed to Lupe
- The Wingnuts grinded through an insane 100-game regular season schedule, through record heat, including stops in 13 cities, and as far away as Winnipeg
- Winnipeg is in Canada
- The Wingnuts won the central division tittle and made the playoffs
- I realized that baseball will likely kill me before cancer will ever get the chance
- Lupe said yes
Again, that's the short list. All in all, it has been an amazing summer.
So, now what?
Lupe and I are settling back in here in Austin and looking forward to an adventurous next few months. It feels like we've got so much to do but it's really refreshing to be thinking about our future and things other than just melanoma. We are planning a wedding, setting up visits with family, and just getting back to "normal" life.
The fact that we are even focusing on these other things is a reflection of how far we've come in such a short period of time. I don't have to go back very far in this blog to be reminded of how recently it was that our days were dominated by treatments and therapies and surgeries. Not to mention the worry and stress.
It's not that these happenings are permanently gone. In fact, it's completely absurd to think that the worst is behind us. But, for now, life is really good. It's important as a cancer-fighting melanoma warrior to acknowledge the good. It's equally important (in my mind) to be grateful for the beauty in life.
The beauty in life is deciding where the out-of-towner's are going to stay when they arrive for your wedding.
That's not a pain in the ass. It's not an inconvenience or a problem.
Planning your future is a gift, not a hassle.
I'm very excited to announce that I will be participating in the LIVESTRONG Austin Challenge next month. I will be riding the cycling portion of the event and plan to pedal about 20 miles. I've got some training to do but it should be an incredible experience. There will be thousands of participants, including many cancer survivors and their families. I will be tweeting regular updates on my training progress as the event draws closer. @coachrose6
For more info about the event, click here. Last year, the event raised over $3,000,000.00 for the fight against cancer. Is that good?
It's a great day to be alive!
-Brian
8/1/2011 @ 2:18pm
Let's get right to it. Just the facts.
Last Tuesday I returned to Los Angeles to mark the end of cycle #4 of the PLX-4032 (which we will soon be referring to as Vemurafenib). As I was completing an even-numbered cycle, this visit also included fresh, hot-off-the-press CT scans and an MRI. On Wednesday I returned to the clinic for the results and a consult with the team at The Angeles Clinic.
The official verdict: I'm continuing to respond well to the drug. The tests are showing an average tumor shrinkage of 29% since I started this trial four months ago. The spot in my lung which started at approximately 2.1cm is now measuring 1.2cm. Another larger lesion in my liver that started at about 1.9cm is now 1.5cm. Additionally, my brain continues to be stable with nothing new to report.
Oh, how the tables are starting to turn. I have visions of these evil melanoma cells running for their lives, begging for a second chance.
There will be no second chances.
You had your chance. You've had your day in the sun (no pun intended). You've wrecked lives and families. You've terrorized and consumed for long enough. You've baffled science and doctors who have dedicated their lives to wiping you out. You've threatened me and the ones I love. You've pushed us to the edge.
You've attacked my lungs. I'm still breathing.
You've attacked my brain. My mind is strong.
I accept that I cannot beat you with my hands or this thing would have been over a long time ago. For that, you are lucky.
But I am stronger now than ever before. My family and friends are rock solid, standing right here with me. My spirit is firm. Damn, it feels good to kick your ass!
(Now back to our regularly scheduled update, already in progress...)
So, the news from LA was good. Great, actually.
I did also have a spot next to my left ear biopsied. I've had some swelling and some discomfort in that area for about a week. I'm still waiting on the results from the lab but I'm inclined to believe that it is some sort of ear infection. It appears to be making it's way behind my ear and down the side of my neck. I'm not overly concerned. I'll let everyone know if that changes.
For now, we continue forward with the trial and the Vemurafenib. I'm due back in LA toward the end of August and the cycle continues.
I feel so blessed to have such amazing support all around me. I feel like I say that a lot, but it's something that is always on my mind. The WIchita WIngnuts organization has been simply unbelievable. Our GM, Josh Robertson, has integrated our story into the operations at the stadium. The staff proudly sports their "HowsBrian" t-shirts at every Sunday home game. The shirts are actually being sold in the stadium gift shop.
Josh's wife, Monica, has introduced us to a product line called XYNGULAR. For the past couple of months I have added 2 of their supplements to my daily routine: The Super Fruit Global Blend and the Super Fruit Global Blend Crystals (XYPSTX). These 2 products are immune-system powerhouses! And Monica has been so gracious and generous in getting these products to us.
I also can't say enough about my manager, Kevin Hooper, and his family for all they do. In addition to the day-to-day support, Hoop's family has been instrumental in producing and distributing the "HowsBrian" t-shirts. I'm so grateful to have them in my corner!
Speaking of the t-shirts, they're the hottest thing going! And if anyone is curious about what these shirts really mean, you'll love this...
A couple of weeks ago, Hoop handed me an envelope with a coupe hundred dollars in it from shirt sales. The next day I went to the bank to deposit the cash. That same night I got on the computer and booked my next flight to Los Angeles using that money. That's it. Simple and straight-forward. There are other things as well (pathology bills, doctors office tabs, etc.) but the help with the travel every 28 days has been such a relief.
So, thank you to everyone who has purchased a shirt. Not only did you get an awesome shirt, you've also contributed directly to my ability to receive the care that I need. Like it or not, you're in the Fight!
I also want to say thank you to Ryan and Rise Above It. I filled out a piece of paper, had one of my doctors sign it, and they sent me a check to help pay for my travel. Please check out their organization and read their story. There's no catch. They just help people and we are grateful for what they've done for us.
LIVESTRONG continues to work for us behind the scenes, as well. I've written a lot about this foundation and Lupe and I continue to be inspired and encouraged by their work. It's a special connection and we are excited to get back to Austin next month to check in with everyone there.
So, that's it. I just wanted to offer some gratitude to some of the people we are lucky to have in our lives. In the face of some of the greatest challenges we are finding some of the simple beauty in the world. I'm convinced that this beauty exists within all of us. It's more obvious to some than to others, but it is there.
Thank you, cancer.
Now run for cover you sorry sonofabitch!
Fight Like Hell!
-Brian
7/5/2011 @ 8:55pm
Happy 4th of July!
I hope everyone had a wonderful and spirited holiday! Lupe and I are back home after spending a couple of days up in Kansas City. It was a very nice getaway. My team played a quick 2 game series against the KC T-Bones which drew nearly 15,000 fans in two nights. It was great to be able to spend the holiday with a couple of my favorite things: Baseball and Lupe!
On the first night in KC, I spotted a HowsBrian t-shirt in the crowd behind our dugout. I didn't recognize the man wearing the shirt but when I made eye contact with him he smiled and waived as if we knew each other. It was awesome to see one of our shirts in an another teams stadium.
The following night as we were finishing up our pre-game batting practice, fans started filing into the stadium and once again I saw the man wearing his HowsBrian tee. He and his wife and daughter were holding signs that they had made for the game. There was a "Go Nuts" sign and a "HowsBrian.com" sign. I had to find out who they were.
When batting practice finished, I walked up into the stands and sat down to chat with this great family. They introduced themsleves and told me a cool story about a trip they had made to Wichita and how they found about my story. The gentleman bought the shirt at our stadium gift shop along with some other Wingnuts merchandise. He has some family history with cancer and took a personal interest in our fight. I was really touched by their kindness and support and I hope that they read this with a smile!
I am still feeling really good as I continue with the trial pills. Very minimal side-effects. Last week was my scheduled trip to Los Angeles marking the end of cycle #3. My blood work looked great and the physical exam went well. All in all, nothing really new to report. I've got new scans and MRI coming at the end of July.
The latest reports on the PLX-4032 continue to impress and inspire. As the drug moves towards approval from the FDA, the word is definitely getting out about the potential of this treatment. Doctors are now researching the effectiveness of the drug when combined with other therapies. I can only hope that the momentum will continue and that the science will continue to advance toward a cure.
Until then, we will continue our efforts to educate, advocate, and FIGHT LIKE HELL!
In other exciting news, Lupe and I will be featured in the upcoming issue of the LIVESTRONG Quarterlymagazine. A couple of months ago we were approached about sharing our story with the publication in a section called the Cover MVP. We (of course) were more than happy to get involved. I will update with more information as soon as I learn more. You can also learn more about the magazine atLIVESTRONG.org.
I was also interviewed today by a local TV station. They are putting together a piece that will be broadcast on there Sports Sunday show here in Wichita. They have also agreed to put it up online so that everyone will be able to see the broadcast. I will update with all the airing information as soon as I get it.
There is no real master plan here, but I feel very lucky that I continue to be presented with opportunities to share my story and experiences publically. I suspect that my positive nature and good attitude have something to do with this. But I continue to be motivated by the relentless resolve that I am going to beat this disease. I know that there is a long road ahead with many challenges waiting in the weeds. But I will win. And I invite the attention of others to watch me do it and maybe even gain something themselves by experiencing this with me.
I also embrace the opportunity to spread the word about protecting our skin. I hope that everytime someone reads these updates or an interview or sees a piece on the news, etc., they remember how important it is to wear sunscreen and to get check-ups regularly. Skin cancer is a very serious and very real issue. The facts are undeniable. And if you think it can't happen to you, just give me a call sometime and we can chat.
Thanks to all for the love and support! I am strong and life is good!
-Brian
6/27/2011 @ 12:27pm
A preacher is caught in a heavy rain flood. The water is up to his waist when a small boat approaches him and offers to help.
"No, thank you", the preacher says. "I'm a man of God, and He will save me."
The water continues to rise, now nearly at his chest when a second boat passes by. A man in the boat calls out to the preacher, pleading for him to get into the boat.
"God will save me. I have faith in Him."
Now the water is over-powering the preacher. He is struggling to stay afloat, struggling to breathe. A third boat approaches and begs to help.
The preacher resists, "God is my savior. He will not fail me."
A few short minutes later, the preacher is dead. He has drown in the floods.
The preacher appears before God in heaven.
"But, God. I was sure that you would save me. I held onto my faith until the very end. I believed. How could you let me die?"
God replied, "I sent you three freaking boats, you idiot! What else do I have to do???"
Opportunity is what you make of it. It's not always clear and obvious. Having the courage to grasp the opportunity is what seperates those that are doing from those that wish they were doing. When opportunity comes, you must be ready and willing. If not, you can't look backward and wonder why nothing good ever came your way.
I am continuing to tolerate the meds very well. I feel great and am set to return to Los Angeles on Wednesday for a check up. Although I won't get new scans again until late July, I know that the drugs are working.
I only had a few moments to write today, but I will follow with another update tonight or tomorrow.
Thanks for the love and support as the Fight continues!
-Brian
6/2/2011 @ 11:50pm
Our definition of "good" news has been slightly modified over the past 7 months or so. Lupe and I have come to realize that as long as there is nothing overly horrible or catastrophic being presented to us by a doctor, that is good news. But, truthfully, there is still a huge difference between mildly average, non-terrible news and truly good news.
Today, I am happy to report a piece of great news.
Because it's been nearly 2 months since my last update, I'd like to first fill in the gaps...
Lupe and I spent most of April at her moms house in Los Angeles. During that time, I began taking the trial drug known as PLX-4032. Initially, I was instructed to take 4 pills (960mg) twice daily. This is an extremely heavy dosage, but it is the standard starting point for all new trial participants. For the first couple of weeks I was feeling great. I was actually beginning to believe that the side-effects associated with the drug would perhaps leave me alone.
A day or two into my third week on the drug I woke up with a mild rash on the backs of my hands and kneecaps. Another day or so and I began noticing the rash on the tops of my feet. Shortly thereafter I began feeling some pretty intense flu-like symptoms. I would have the chills, then sweat, then chills again. Lupe was monitoring my temperature which was hovering around 101.
A couple of days with all of these symptoms and I was on the phone with the team at The Angeles Clinic. The decision was made to hold the meds until the symptoms were resolved. 24 hours after I stopped the drug I felt incredibly good. The connection between the symptoms and the drug was obvious.
After the rash and fever subsided, I was instructed to restart the meds. This time the dosage was dropped down to 3 pills (720mg) twice per day. I have been holding steady on this dose for nearly 6 weeks now with no significant side-effects. Well, except for the whole crushing the cancer side-effects! We'll get to that in a moment.
In early May, Lupe and I packed up and headed to Wichita. It's baseball season, folks! Melanoma or no melanoma, it's baseball season! 4 rounds of biochemotherapy, too many surgeries to remember, 2 Gamma Knives, and a partridge in a pear tree! If I'm walking and breathing, I'm coaching. It's a wonderful, beautiful, magical thing and being on a baseball field has never meant more to me. This is what winning the fight means!
Two days ago marked the end of my 2nd cycle on the PLX-4032. Every two cycles are capped by new CT scans and a new MRI. Yesterday, I received the results from the tests. Cue the GOOD NEWS!
It's tough to describe the feeling I got when my doctor entered the room and said "Brian, you're getting better."
Huh?
"The lesions are responding to the treatment. They're shrinking. And there are no new spots anywhere, including the brain."
Ummmmmm.... Ok? Waiting for the "but"....... Anytime now......
"It's good news today. All good news."
Right about then my awesome nurse, Rachel, chimes in "It's the BRAF pill! Of course it's good news!"
Meanwhile, I'm totally lost. Don't these people know who I am? I'm the Fight Like Hell guy for crying out loud! Good news? What the heck am I supposed to do with good news?
I don't have much experience with good news. I've been fortified to handle the not so good news. There's got to be a catch.
The fact is there is no catch. The existing lesions have shrunk by an average of 20-30%. There are no new tumors. My brain is stable. That's it.
I have a long way to go and this fight is FAR from over. There are no guarantees that these results will continue or how long the good news will last. But today the news is awesome! Today is proof-positive that there is victory in love and hope.
I promise to update more frequently, moving forward. I can only hope that this update was worth the wait.
We still have plenty of t-shirts ready to be shipped. I am so grateful for the strength, support, and prayers as we continue the battle.
-Brian
4/4/2011 @ 2:55pm
So, it occured to me that I haven't updated in a few weeks and I think I can explain why. You see, when I feel good I like to do things. And usually I like to do things that involve the outdoors, or baseball, or something active. If I'm feeling crappy (see: biochemotherapy, surgery, etc.) that's usually the time I would spend online and updating this site because I can't get out of bed and I'm totally stir-crazy. Anyway, it's no excuse. Just something to think about. In my case no news is probably good news. With that being said, here's the latest...
Lupe and I are here in LA staying at her mother's place for the next few weeks. We've been here for about a week now. Last week I had a full slate of tests (CT's, MRI, etc.) to finish off the requirements for acceptance into the new clinical trial. We also celebrated Lupe's birthday week, which includes her actual brithday and is conveniently surrounded by her birthday month. Good times, babe!
Today, it was follow up time at The Angeles Clinic. I met with Dr. Omid Hamid for about 20 minutes to discuss the new scans as well as the plan moving forward. The scans revealed no major changes from those taken last month. We covered the bases on instructions for the new drug I'll be taking and went over some potential warning signs, etc. to watch out for. The doctor seemed very upbeat. In fact, The Angeles Clinic as a whole seems to be very unimpressed with my melanoma. Not that anyone is laughing at me, but I think that they've probably seen it all. AND, they've seen first-hand how well this drug can work for people. They are very confident which is right up my alley because kicking cancer's ass is what I do!
After the consults, it was go time. I recieved my first dose of the PLX-4032. Each dose is four pills. I'll take a dose twice daily.
Here's the official melanoma scoreboard as of today:
Liver - Approximately 10 lesions, largest is roughly 2cm
Left Lung - 2 lesions, largest is roughly 2cm
Right Lung - 1 lesion, less than 1cm
Bone - Various lesions scattered. Very small lesions, but present
Brain - 1 lesion, roughly 7mm. I had this spot Gamma Knifed and it should fade
I believe that's the official count. I'll update periodically to track the progress of the drug. Again, the drug has shown a fantastic response rate in patients with the BRAF v600e mutation that I have. It's the drug's ability to sustain the results that is the biggest question. Stay tuned!
On another note, the first batch of HowsBrian t-shirts are now arriving to those that have ordered. Thanks so much for your patience and for the support! I hope everyone loves the shirts as much as we do! And for those who have not yet ordered a shirt, what are you waiting for??? We have plenty that are made and ready to ship today. They're awesome and all the cool kids are doing it (right, Auntie C!).
Thank you all for the continued love and support! The fight rolls on from California with an exciting new drug and the same FLH attitude!
Countdown to Wichita: 25 days!
3/17/2011 @ 12:27pm
Lupe and I enjoyed a taste of the SXSW experience last night as LIVESTRONG hosted an intimate live show at their headquarters downtown. Some great people and some amazing music made for a very fun evening.
There was a very touching moment last night that sticks out in my mind and I wanted to take a second to share. During a break from the music, one of the event organizers was introduced and took the stage to say a few words to the audience. The man is a loyal LIVESTRONG supporter. Although I don't know all of the specifics of his story, it was clear that the he had apparently lost his young son to cancer.
His strength and sincerity were incredible. There's a certain demeanor that develops in people who have been touched by cancer, particularly when the individual is talking about the subject. Sure, the hurt and the pain are present. But for those that have lived with the weight of this disease, with all of it's might, or for those who have seen up close the devastation that cancer is capable of inflicting, what emerges is a powerful and unbreakable spirit.
As we listened to this man speak, you could literally feel his spirit igniting the enitre room. His message was well presented, and well recieved. He made references to a musician's courage in getting up on a stage and saying the things we all wish we could. He pointed out the power in a good song to make us feel happy or sad, excited or calm. And finally, he presented the connection between music and the mission of a foundation like LIVESTRONG, which is to be heard and to be counted. To matter. To not simply sit in the corner afraid and without purpose. Instead, to stand up and speak proudly. In other words, FIGHT LIKE HELL!
The message transcends cancer or music. It's about taking pride in who you are and what you do. It's about acknowleging the adversity in life but not letting it paralyze your will or your soul.
I'm gearing up for a quick trip to Los Angeles to get things rolling with the clinical trial and then the Gamma Knife treatment next week. Also now on the horizon is getting back to Wichita for the summer, back to one of the REALLY IMPORTANT things in life: coaching baseball! :)
We're up to around 60 shirts sold now! Thanks to all who have ordered so far! It looks like the first orders will begin shipping next week sometime. I'm very excited to get them out and to hear what you all think.
Happy St. Patricks Day!
-Brian
3/12/2011 @ 10:14am
As mentioned previously, Dr. Homsi has reffered me to participate in a clinical trial out of Los Angeles. The trial involves a drug known as PLX-4032. The drug is not yet approved by the FDA but has shown some exciting potential in advanced stage melanoma.
I've spent lots of time researching this drug and other BRAF inhibitors. I thought I would share some resources and information for anyone interested in learning more. Once again I'm left feeling absolutely amazed by the science behind the treatment.
Here is Wiki's explanation of the drug.
In order for the drug to be effective, the cancer must have the BRAF mutation V600E. I have already been tested and verified.
From Plexxikon, the drug manufacturer: Recent report
Also from Plexxikon, the $935 mil purchase
While the drug has shown significant effectiveness in shrinking cancerous tumors, the concern is it's ability to sustain the results. Cancer cells apparently begin to mutate and perhaps develop a resistance to the drug over time.
We'll see about that.
Love to all!
-Brian
3/9/2011 @ 1:58pm
SHIFT: To change place or direction. To transfer or move around.
The fight against cancer is often times like trying to shoot a moving target. Specifically when the fight is with melanoma. Now, sometimes moving targets can be hit squarely and directly with instant, undeniable success. Other times the target might be missed completely. But, what about the in-betweens? The glancing blows? The "we think we hit the target but can't confirm the results"?
Welcome! It's great to see you! Come on in!
As I attempt to make sense of everything that is going on inside my body and what to make of this last round of scans, I'll start with what I know for sure: The cancer is still present and I have a new, previously unseen lesion on my brain. I suppose that is the bad news. I will undergo another Gamma Knifetreatment shortly to zap this new spot.
Because there is a new spot on the brain, the decision was made to hold off on round #5 of biochemotherapy. In fact, Dr. Homsi has decided that continuing the biochemo treatment would likely present more harm than benefit. So, for now, the week long, body crushing, kick the crap out of cancer (and the rest of Brian) cycles are over. Lupe and I are back home in Austin. And I'm not even nauseous!
My first reaction after hearing this news wasn't great. Why would we just stop the treatment before it was finished? The plan was to go 6 rounds. Although the side effects are clearly tough to deal with, I've been recovering and bouncing back nicely after each cycle.
But before I raised the white flag in defeat, I had to consider Dr. Homsi's more logical perspective. The reality is that biochemotherapy is an extremely aggressive, hardcore treatment with the potential to severely damage vital organs in my body including my heart, liver, and bones. After four rounds of this treatment we are not seeing dramatic changes in the disease. There has been slight improvements in some areas but there has also been slight progression of the cancer in other spots.
In my opinion, the success of this treatment has been the fact that the disease has been slowed down and virtually stopped from growing and spreading. I'm ok with the "don't let it get any worse" stradegy. Unfortunately, using biochemo to just manage the disease is not medically responsible. It makes sense, actually.
We will now begin exploring the world of BRAF inhibitors. Back in November we discovered that my melanoma contains a genetic mutation that opens the door for exciting new treatment options. Dr. Homsi has referred me to The Angeles Clinic in Santa Monica, CA and Dr. Steven O'Day. I'm in the process of connecting with these folks and opening a new chapter in the fight. More info and details coming soon!
I'm so grateful for the continued love and support as we continue this journey. I'm feeling good. Positive, upbeat, and as optimistic as ever. We rocognize that this battle is a marathon and it's important to pace ourselves accordingly.
I have to send a special thanks to all that have ordered the HowsBrian t-shirts. So far we've sold about 35 shirts. My goal is to get to 100 by the end of March. For those who've already placed orders, thank you for your patience as we work to get the first batch produced and shipped.
Again, 100% of the proceeds from this fundraiser will be used for expenses related to my fight with melanoma. The money we raise will help us with the medical debts we've accrued (and continue to incur) for services like CT/PET scans, consultations, sugical procedures, and pathology bills. The funds raised will also help with travel expenses to and from treatments, lodging for neccesary outpatient services, parking, etc. Also, if anyone has other ideas or suggestions for fundraising, we'd love to hear from you!
All the best!
-Brian
3/7/2011 @ 12:12pm
Here we go!
Lupe and I will be hitting the road shortly. We're due in Houston at around 4:00 today. After the standard blood work, I'll have a quick x-ray to make sure that my PICC line is still properly positioned. Assuming all is well, I'm scheduled to check in for an MRI (brain) around 9:30pm.
We'll spend the night at a hotel and a quick turnaround will have us back to MDA at 8:00am to check in for CT scans. Once the tests are complete we'll have a short break for lunch and then head over to Dr. Homsi's office for the results. The results are the name of the game in this business. Results are what this fight is all about!
After the consult with Dr. Homsi we've got a meeting scheduled with the Integrated Medicine Clinic at the MD Anderson Wellness Center. This is something I've been interested in for some time now. For us, it's an opportunity to learn more about some different types of treatments and therapies that are perhaps non-traditional. Things like accupuncture, massage, diet and natural cancer remedies. Even things like yoga and self meditation. The idea is to explore different concepts that can be added or combined with my current, more traditional treatment regimine.
Again, assuming everything goes well, I'll be admitted tomorrow night for round #5 of biochemotherapy.
I'm armed with some new tools this time courtesy of my new favorite book "PLANET CANCER". (Thanks Heidi and Christopher! We love it!) The book is written by cancer suvivors for cancer survivors and is chock-full of useful, relevant tips and information on virtually everything that a young cancer fighter (and their family/friends/caretakers) will likely encounter. I highly recommend the read for anyone who has been touched by cancer.
The t-shirts are now available! Thank you to all who have ordered so far! And thank you for your patience as our new mini production team goes to work. We have minimum order requirements from the silk screening company so it may be a couple of weeks before the shirts arrive at your door. Just know that we will get them to you as quickly as possible. And for those who have not yet ordered, you can click on the Online Store tab on the website menu. If you have any questions or any issues ordering, please let us know. Thank you for the support!
I'll update tomorrow evening with the results from the testing.
Take care and make it a great day!
-Brian
2/24/2011 @ 2:21pm
Well, here I am. Long overdue for an update. I've logged on several times but for some reason I just haven't been real interested in writing. I'm not exactly sure of why. Maybe I'm experiencing "writer's block".
The good news is that I'm really feeling great! Lupe and I returned from Houston last Monday (Valentines Day) following round #4 of the biochemo treatment. I had a pretty rough week last week as I started the recovery. The usual suspects; nausea and fatigue.
The treatment has become a bit predictable on some ways. I'm amazed at how my body responds so similarly each round. I guess I'm starting to get used to the physical issues associated with the chemo but the new challenge seems to be the mental wear and tear. There's just something about continuing treatment that you know is going to knock you down. As good as I'm feeling right now, I know that round #5 is just around the corner. And I know exactly what to expect. But the show must go on. The fight will continue!
We're due back at MD Anderson on March 7th. On tap is a new set of CT scans and MRI. We'll get the results and an update on the overall picture on the 8th and that night we're scheduled for admission for round #5.
We've been working on getting the t-shirts available. A couple weeks ago I got a chance to see some samples of the shirts and I am so excited to get them moving. We've had some issues with setting up a way for everyone to order the shirts but the issues seem to be resolved. We are ready to debut the shirts and will have the link setup within a few hours from now.
As for ordering the shirts, please feel free to order as many or as few as you'd like. The shopping cart system we've designed will be pretty simple and straight-forward. However, I would ask for a little patience because I get the feeling we may get bombarded with orders over the next few weeks. I expect some growing pains, but just know that we will get the shirts processed and shipped as quickly as we can. We've worked very hard to make sure that things will go smoothly with the ordering, etc.
Thanks to all for the contuned love and support. I'm so excited with the response we've gotten from the LIVESTRONG video. I'm continuing to realize the power of positive and how my fight is making an inspirational impact on others. Although my focus is soley upon my personal fight with cancer, the reality is there are millions of individuals around the world that are battling the disease everyday. I'm once again humbled to have so many great people in my corner that have taken a personal interest in my fight.
-Brian
2/7/2011 @ 9:12pm
I suppose some of you might be interested in how things went on Friday night. With all the hype leading up to the event it's almost hard to believe it's now over. But, I have to say, what an incredible night!
We arrived at the Hyatt around 5:30 and got ourselves signed in. We caught up with Chris D. who showed us around a bit before hauling me off for a sound check and prep for the big show. He also presented me with a framed copy of the LIVESTRONG Manifesto that included a personal note from Lance Armstrong.
Around 7:00, Lupe and I were escorted backstage and seated in a makeshift "green room". A few minutes later, Lance and his manager appeared and took a seat with us. We had a few minutes to chat before the show started.
I have always heard that Mr. Armstrong is a very down-to-earth and mellow guy. I can confirm that now. But the real story about this man is the power of his presence. He's a global symbol of strength and inspiration. A few moments with him tells you all you need to know.
We took our seats next to the stage and a few seconds later the screens lit up with the words "Fight Like Hell". Lupe and I were sharing a table with Lance, Sanjay Gupta (from CNN), Lance's manager, and a couple of their LIVESTRONG associates. The film began and the room fell silent.
Watching the film, in that moment, with hundreds of other people, suddenly put everything into perspective. Everyone in the room was locked in on the screens. The story is compelling and the film itself is very moving. It didn't matter than no one in the room knew who the heck I was. We were all there for the same reason. And the message/content of the film was very familiar for most.
It hit me during the last few minutes of the video that it was almost my time to take the stage. It wasn't quite a nervous breakdown feeling, but I was nervous.
The film ended and I was introduced. It felt as though the room errupted with applause. I was completely blown away by the welcome I recieved. I was so caught up that I think I may have forgotten that I had to speak. I definitely forgot everything I had planned to say. I had to wing it and just speak from the heart.
I said a few words and then shifted to introducing Lance. He joined me on stage for a handshake and then I returned to the comfort and safety of my table and my Lupe.
It was an incredible night that I will never forget. Interestingly, it wasn't just the film or the chance to spend some time with some famous people that I am most excited about. We met some really amazing people. People with stories of battles just like ours. Survivors, advocates, doctors, and so many more. Cancer warriors that walk the walk when it comes to making this disease a national priority. Folks that have inspired us in many ways.
<iframe title="YouTube video player" width="640" height="390" src="http://www.youtube.com/embed/i5KfySVkqyw" frameborder="0" allowfullscreen></iframe>
Hope you enjoy the video. There will be more to come as we continue the fight. Also, my speech and highlights of the evening will be available soon. I will post as soon as I get them.
Back to business (Houston) tomorrow. Round 4 is calling my name.
Thanks for your continued love and support!
-Brian
2/3/2011 @ 11:52am
Got cold?
I know it's not right for me to vent about 18 degree weather when people are digging their cars out of 3 feet of snow to get to work and it's -10 outside. I get it. But man, it's cold! Bitterly cold! I thought I lived in Austin, TEXAS.
We're all getting excited for the LIVESTRONG event tomorrow night. Lupe, Chris (Bonus Dad) and I were invited to a viewing/sneek peek of the video and I think I can speak for the three of us when I say, incredible! I can't wait to share it with all of you. It runs about 15 minutes and really brings my journey to life. The title of the film is Fight Like Hell. Not sure who came up with that but I sure do love it!
I'm feeling great. My body is healing and the pain is getting easier. My armpit is still sore but I suppose that's to be expected. I'm sure it will get better with time. It's very refreshing to feel well. Definitely a reminder that things can and will get back to the way they used to be.
With that being said, feeling this good can only mean one thing... it's almost time to go back to Houston! Round 4 of biochemotherapy is scheduled to start next Tuesday 2/8. While I'm slightly dreading the tough weeks to come, I sure do enjoy kicking cancers ass! I really believe in the treatment I'm recieving. It takes it's toll on me and knocks me down but I have these visions of these wimpy little melanoma cells getting their whole world rocked. I know that I will rebuild and recover. They, on the other hand, are being beat senseless and will be forced to submit. Dr. Homsi's got Weapons of Mass Remission and we're about ready to launch again! Little bastards. I hope they can hear me.
I get a bit fired up.
We all have the strength to win our battles. When we decide that our will is more powerful than our fear, we become unstoppable. I've always thought this but sometimes it takes extreme circumstances to truly believe in the power that we possess. Embrace the power.
I'm excited to see my friends Mat and Summer Wetzel who will be flying in tonight from California. They will be hanging with us through the weekend. They think 50 degrees is cold. It's going to be great! :)
-Brian
1/28/2011 @ 10:18pm
Everyday is better than the last. I'm still sore but considering it's only been a week since the procedure, I'm doing pretty well. I guess you just can't keep a good man down! At least not for very long.
I have been moving around a lot better, enjoying the improving mobility. It's definitely a recovery PROCESS. It's amazing how often we use our "core" or "trunk" in daily life without even realizing it. As I've mentioned before, I have 2 incisions on my abdomen and one on my lower back. Then there's the armpit fun. Just sitting down for too long or getting out of bed the wrong way and I'm quickly reminded that these wounds are not yet healed. Sleep has been decent (at best) but if I had to pick between pain and nausea, I'll take the pain anyday!
Today, Lupe and Chris joined me for a visit/tour of the LIVESTRONG facility in downtown Austin. What an incredible place. The more I learn about this foundation, the more impressed I become. Their mission and goals are very strong and straight-forward.
We had the opportunity to meet and chat with LIVESTRONG President and CEO, Doug Ulman. Doug's story is very inspiring. He's beat cancer three times, including two bouts with melanoma, and has become a leading advocate for cancer survivors around the world. In addition to his role with LIVESTRONG, Doug is also the Founder of the Ulman Cancer Fund for Young Adults, which (I've discovered) offers a wide array of support services designed specifically for young adults with cancer. Mr. Ulman, like many other folks employed by the LIVESTRONGFoundation, has a very personal connection to this disease and displays a genuine passion for helping people affected by cancer. It was a real pleasure to meet him.
The t-shirts are getting very close! I should have some samples early next week and we'll start production shortly thereafter. Still working out some logistics on how they will be ordered via this website but we will get it worked out and be on or way in no time. I'm really excited to see how they turn out!
I also wanted to take a moment to thank everyone for the continued support and inspiration. When we started this site 3 months ago, I never imagined the impact it would have on me. It's truly remarkable how the worst of circumstances can bring out the absolute best in people. I'm reading messages from folks that I haven't spoken to in years. And I'm not talking one or two or three years. I'm talking about people that I've lost contact with and haven't talked with in 10 and 15 years! I'm also connecting with others that I've never even met. Some that have very specific ties to melanoma. Some that are friends of friends. Some that just stumbled across this website and decided to leave some kind thoughts.
I'm honestly blown away. I'm so very grateful for everyone that visits this site and for everyone that offers their support. Even when you just say hello, it means everything to Lupe and I and my family. We didn't choose this fight but we will continue to battle everyday. And based upon the nearly 7,000 visits to this website, the hundreds of messages, and the outpouring of love and hope, we know we're not alone.
Thank you.
-Brian
1/22/2011 @ 4:48pm
Just a quick update as I'm recovering from the surgical procedure on Thursday. Everything went well. Dr. Gershenwald harvested cells from 2 spots in my abdomen, 1 spot in my back and from my left armpit. I'm feeling pretty good although sore when I move around. Fortunately, the incisions were not very deep so I should be feeling much better pretty quickly.
Thanks for the positive thoughts and the prayers! I will update again in the next day or two.
-Brian
1/17/2011 @ 4:26pm
This is so great! I love it when I turn on my laptop and actually feel like writing. And I have some good stuff to share. It's terrific! Seriously, it's great.
First things first. I went back in for blood work this morning and it looks like my body is once again repairing and rebuilding. Platelet counts are much improved and all other readings are stabilizing nicely. Not that I really need a doctor to tell me these things. I've grown so in tune with my body that I literally guessed what my platelet counts would be today... and I was spot on. 80,000. Lucky guess? I THINK NOT!
I feel better. I'm stronger with each passing day. My appetite is improving as the nausea gives way. I'm sleeping better and generally a bit more mobile. I am experiencing some of the bone aches and pains but nothing that I can't handle. I have a ways to go with the endurance but I did pass the shower test yesterday. (The shower test means getting up and taking a shower and not feeling like I might pass out from exhaustion before I'm finished) My fellow cancer warriors, you know what I'm talking about! The shower test is a huge deal. Who doesn't love a good shower? I know I do. I'm quite sure Lupe appreciates a fresh, clean Brian as well.
Meanwhile...
I spoke with Chris Dammert at LIVESTRONG last week about something very cool. Chris and his team are gearing up for an exciting event here in Austin set for Feb. 3rd and 4th. The event will bring together hundreds of LIVESTRONG partners, sponsors, and supporters from around the country. On Friday evening (Feb. 4) they are planning a wonderful dinner party for approximately 700-800 guests at the Hyatt hotel downtown. As some of you may remember, I have been the subject of a video that is being produced for the organization documenting my journey with cancer. This video will be shown at the dinner party to kick off the night. When the video is finished, the lights will be raised and yours truly will be standing on the stage. Before I even have time to get nervous, I will introduce the man of the hour; Mr. Lance Armstrong. It's an amazing opportunity to participate in a very special way to a foundation that does nothing but help people like myself and my family deal with this disease. I'm honored, flattered, and can't wait. I have made arrangements to have my portion of the evening video taped and will share the moment with everyone who's interested by way of YouTube!
Thank you for the love and support!
Fighting Like Hell...
-Brian
1/14/2011 @ 12:26pm
Once again, technical difficulties (with me and with the website) have delayed this update. Sorry it's taken a while but I think we've got a handle on things and we're now good to go.
This week has proven to be a tough one. If I'm ranking the recoveries following the treatments, this one has got to be the roughest so far. I got released from MDA on Monday with the news that my platelet count was already very low. The doctors actually wrote an order in advance for a platelet transfusion if my counts were to drop below 30,000.
One of the side effects of having these treatments so close together is the residual stress on my body. Every time I finish a round of biochemotherapy, I'm sent home with a lower platelet count than the time before. And even though my typical 2 week break in between treatments helps me to feel a bit better, my body is still being pushed. I'm thinking that some of that has caught up with me.
I had blood work scheduled for Wednesday morning. The results indicated my platelet counts had fallen to a very whimpy 17,000. I was sent over to have the transfusion right away.
I know that I'm making progress as far as feeling better but feeling better sure seems to be taking it's sweet time.
In other news, Dr. Homsi has decided to retry the TILconcept. This is very exciting as this treatment continues to show very promising results. My T-Cells declined to grow the first time we tried this and that appears to be the major hurdle with this therapy. But, everyone deserves a second chance and I'm optimistic that this time around will be better.
The first step is harvesting T-Cells from my body. This means surgically removing a cancerous nodule or lesion. We've identified the spot and have scheduled the surgery for next Thursday the 20th. It will be a relatively quick, outpatient procedure and we expect everything to go very smoothly.
Once the cells are removed, the MDA lab begins the process of reproducing the cells in mass quantities. It usually takes between 4-6 weeks to find out if the process was successul. Stay tuned.
The HowsBrian t-shirts are getting very close. It's looking like we will start taking pre-orders in the next week or so. We have to take pre-production orders because, honestly, I have no idea how many shirts to make. I will have a link up soon with all the information for ordering and a preview of what the shirts look like. I'm very excited to have these available and I can only hope that everyone likes them and buys them.
Thank you for the continued comments of hope and support!
-Brian
1/4/2011 @ 10:25pm
Ok, we've got news. I'll start with the same comment I heard when we arrived for our consult this afternoon... "Brian, you're not getting any bad news today".
Lupe and I are settling in to the room as I was admitted earlier for round 3 of biochemotherapy. It's become a familiar place and a familiar routine. For those that follow this blog, you'll know that the fact that I was admitted for treatment today is good news. I never thought I'd be excited about beginning a week of chemo treatment. Then again, I never thought I would need this treatment period.
So, Dr. Homsi's official update on my status is "mixed results". There are several spots in my body that showed some progression (that means the spots grew since the last scans). There is also evidence that some spots have shrank in size. However, the changes (both good and bad) are pretty minimal. We're talking millimeters here. Ultimately, I think we would have loved to see more signifigant reductions in the size of the lesions, but things could've gone a lot worse for sure.
I'm calling this day a success.
It's tough to get too excited, however. Melanoma is a mean and very persistent opponent. I must admit, I do enjoy pounding the crap out of this disease but I have a healthy respect for what the cancer is capable of. And knowing what it's capable of means (among other things) understanding and accepting the fact that it can be extrememly unpredictable. What's good today may be not so good tomorrow. This unpredictability keeps me level when it comes to getting too high or too low.
With that being said, I'm inspired today with the realization that I can fight back against this bully. And not just the kind of fight where people would say "he put up a good fight, but...". I'm talking about the rubber meets the road kind of fight that confirms without a doubt that this disease has weaknesses and volnerabilities that we can attack. It feels good to fight back. And if Mr. Melanoma thinks that we're anywhere close to being finished, boy is he in for a very UNpleasant surprise.
Lastly, I wanted to share a video that was put together by my Aunt Clair and the Rose family. I saw it for the first time a couple of days ago and was completely blown away by the powerful message of love and support. Please find the video here
Thank you for keeping us in your thoughts and prayers!
Round Three, FIGHT!
-Brian
1/2/2011 @ 12:27pm
Happy New Year!
Hope everyone had a fun and safe NYE 2011! I was personally very excited to turn the page to a fresh new year. Now, if I can just keep those resolutions!
Speaking of resolutions, I have some suggestions if anyone is interested in adding a couple to their list. #1 - Protect yourself from the sun in 2011. It sounds simple enough, right? Wear sunblock or a hat or something. #2 - Stay out of the tanning beds! It's like capturing everything harmful about the sun and focusing it directly to your skin. I know, I know, everyone loves the beautiful bronze tan. The question is, at what price? I would accomplish nothing with this website and with this fight if I didn't get the message out that the sun (and UV rays) are extremely dangerous. Be smart. And look out for your kids. Make sure they're protected whether they like it or not. Share my story and educate those who think it can't happen to them.
Well, here we are. Just a matter of hours left before our return to Houston. Lots on the agenda for the upcoming week. It all starts tomorrow with blood work and a full round of CT scans and MRI's. My doctors are calling it a re-staging.
I'd be lying if I said I wasn't having a little anxiety about the scans. On one hand, we could find out that the tumors are continuing to grow and the disease is still spreading. A scary concept, but a very real possibility with melanoma. On the other hand, the scans could tell us that the treatment is working and that the tumors are shrinking. You talk about some exciting news! Wow! Or maybe nothing has happened. Maybe there is no change. No news is actually GOOD news for me. At the end of the day, I recognize that there is no cure for my disease so keeping it from spreading and growing sounds pretty good. In fact, that sounds great!
After the scans are complete, I'll meet with Dr. Homsi on Tuesday afternoon to discuss results. The plan is to admit me for round 3 of biochemo following the meeting. I'm looking forward to a smooth week of treatment. And hoping and praying (as usual) that it's working.
I'll update once again when I have new news. Thank you all for the love and support! The fight continues...
-Brian
12/27/2010 @ 1:27pm
Ok, I'm back from the blood work. Labs look good. My immune system is returning nicely. The platelets are coming back strong. All in all, we're rebounding and rebuilding just the way we should be.
It occurred to me after glancing at my last post that I should elaborate a bit on what I mean by "feeling really good". I don't want anyone to get the wrong idea and I definitely don't want to misinform. It's just that how we feel is always relative, right? I might say I feel great, but in reality I might actually mean I feel great compared to having a screw driver shoved in my back. So, for accuracy purposes, allow me...
First off, I haven't needed nausea meds since last Thursday. Definitely a plus one in the "feeling good" category. I'm not feeling nauseous really at all. Now, my energy level is not great, but I did manage to get out of the house several times over the past few days for more than just trips to the doctor for blood work. Again, a plus. But I was not able to stay out long because I start to feel fatigued very quickly. Besides, it's scary out there. Especially the last day or two before Christmas. People get crazy. And I am simply not moving at the same pace or with the same intensity.
The next positive is lack of significant pain. Last time around, my bones ached once the platelets began to reproduce. I also tweaked my back getting out of my sisters car last time and felt an unbelieveable pain for a few days. This time, I have felt the familiar feel but it has not grabbed me with the same vigor. I'm happy to report that I haven't even needed any pain-relieving pills.
Also consider that I've managed to stay out of the emergency room and I think you'll agree that this has been a much smoother ride. I even asked my medical team if they had changed some doses this time around or something. They didn't. I'll take it!
Ok, on to the announcements...
First off, I must wish my incredible Grandma Judy a Happy Birthday! Gram is a huge contributor to this site and a HUGE source of inspiration for me. For those who don't know her, this woman is a symbol of strength, courage, and class. I'm proud to be her grandson and she is at the core of what I'm fighting for. Thank you, Gram and I hope you have an extra special day today!
I also wanted to announce that we are now just a few days away from releasing official How's Brian t-shirts. It's a project that has brought a team of fine people together and I'm very excited to see how it pans out. I'll have more details to share in the coming days but the moral of the story is that I will have t-shirts available for purchase and all of the proceeds from the sale of the shirts will go into an account set up for my family and I. The money we raise will help us with the costs of travel to and from Houston, lodging, and all other expenses associated with my treatment. Did you know that everytime I am admitted for a round of biochemotherapy, it costs roughly $60-$70 just for us to park for the week? I'm sure no one knew that but it's just an example. As you might imagine there are a variety of practical uses for a fundraiser like this, so please buy a t-shirt or two when they become available. It would mean a lot to my family and I.
Well, I think that's it for now. Thank you for the continued love and support!
-Brian
12/27/2010 @ 9:49am
Ok, it's been too long since I've updated. My apologies.
Today begins week two of recovery time. I've gotta say, I feel really good. Like, notably better than last time around. And it's not just today. I've been feeling much better (by comparison) since I got home last week. Am I getting used to the treatment? Am I just toughening up my act? I don't know. I'm going to credit the steady stream of positive thoughts and prayers, and the Holiday spirit! That's my final answer.
Speaking of the Holidays, we had such an amazing Christmas! My brother Clayton was home from the Air Force along with his girlfriend Stephanie. They joined Mom, Kara, Lupe and I here at the house for a few days of quality family time. It's become so much more special to me, sharing these times together. As a family grows and expands (as ours seems to be doing quickly) I am recognizing and appreciating the value of a simple meal together, or just gathering for some catching up conversation. It's really what these crazy holidays are all about.
Another thought that has stuck in my mind is just how fortunate I really am. With what I am dealing with health-wise, maybe it's easy to feel bad or throw myself a raging pity party. But I have so much to be thankful for. We all have much to be thankful for. And there is no time to wallow in the "what I don't haves". For me, I have so much support. My family. My friends. My amazing girlfriend. My baseball organization. My doctors. My How's Brian Army! I am lucky. And I am blessed.
I have to run to go get my blood work. I will update soon with a couple of very cool announcements.
Thank you for the messages! Thank you for being there for me and for enjoying this site!
-Brian
12/19/2010 @ 9:58am
You know, it turns out this biochemo stuff can be very tricky. There I was sailing through round 2 like a champ until... BAM... Saturday showed up and had to ruin the whole thing. The good news: it was really the only "bad" day of this round. The bad news: it was a really, really bad day. The one thing I'm certain of with this treatment is that it's totally and completely unpredictable. Having said that, these doctors and nurses always seem to know what's going on.
It's now day 6 which means we're technically finished. Last night I received my last doses of Interferon and Temodar. They'll monitor me for another day or so to make sure I'm somewhat stable and then it's back home to recoup and recover. I'm looking forward to that.
I'm feeling much better today, in a not feeling like I'm going to hurl every 10 seconds kind of way. I'll be taking a shower in a little while (talk about exciting!). I'm getting caught up on the Guestbook postings which, as usual, are so incredibly appreciated. All in all, I'm doing pretty good.
Looking ahead...
Right now the plan is for me to return to MDA on January 3rd for a new set of scans and brain MRI. What we see on those will determine our next move. If the tumors are shrinking, and the biochemo is working, we will stay the course and continue the treatment. If the disease has progressed, we will likely opt for something different. The proof is in the pudding!
I will update again once I get home and settled. Thank you for the continued love and support.
-Brian
PS: I just wanted to express a special thanks to Heather for sharing your knowledge and insight. Although we have never met, I can't help but feel the connection that this disease has created. I know we'll continue to correspond but I just wanted to point out what an inspiration you have become. Lupe has ordered items from your website. My family and I are grateful for your contributions to this site and wish you the absolute best in your fight!
12/14/2010 @ 2:48pm
There are times when I feel like I want the answers to all of my questions. And I want them right now, not later. It's very easy to loose yourself in the anticipation. When you're in the fight I'm in, you want to know; is ithe therapy working? Is it getting better? Is it getting worse? I have some concerns about the effectiveness of the biochemotherapy. I'm a young, active, strong man that has been overrun with toxins that have knocked me down. And I've come back for more. I've already commited to comming back for as many rounds as it takes. But will it really matter? Will it really work? I don't know for sure.
This is Hope.
I was informed yesterday that my T-cells were not succesfully grown in the lab. These cells were to be part of the TIL clinical trial. The odds were 50/50 that they could produce the cells. Dr. Homsi was dissappointed, and I'll admit Lupe and I were too. We had tried to manage our expectations, but it's human nature to get a little excited about the potential of this trial. It's not the last time we can attempt this, but for now it's a no go.
Sometimes Hope may not be enough.
I'm lying in bed in Houston. We started round two of treatment last night. Lupe has gone off to an art class offered at the Wellness Center here at MDA. I met a man on this floor, Mr. Flannagan (hope that's spelled right), today that has some ties to the Wichita Wingnuts and also the Fort Worth Cats baseball teams. I spend a moment or two chatting with him. Such a small world sometimes.
I'm on the same floor as I was for the first round. Everything seems familiar now. I know the routine. A few of the staff members smiled and appeared to remember me. Who could forget such a delightful patient? :)
We'll be hitting this thing hard through the weekend and my target discharge date will be Monday. For now, we relax and let the meds go to work.
I reminded myself today that I am in control of my attitude, everday. And not only that, I hold myself accountable to be positive and optimistic. Bad news doesn't become good news because we freak out when we hear it. No one wants to be dealing with cancer, or disease, or poverty, or what ever adversity life might throw our way. But every morning when I wake up, melanoma is sitting right there, staring at me.
Unbreakable, unrelenting Hope means I know one day he won't be there. And what a beautiful day that will be.
All of my best!
-Brian
12/10/2010 @ 11:43pm
I'm sitting here at the house with my friend Jeremie that flew out from California for a visit. Shooting the breeze, telling some old and some new stories. Tomorrow we'll be joined by another friend, Steve. As I'm now just a few short days from returning to Houston for round 2 of biochemo, it's really awesome to be able to spend some time with some good friends. The time means a lot. Having real friends means that even when you feel like you have absolutely nothing, you've got everything.
I am feeling good today. A little more energy. A little less fever. My only physical gripe is my back. I believe it to be more platelet "labor" pains, as previously discussed. Yesterday, while getting out of Kara's car, I felt as though I had literally been shot in the back. With a big gun. From close range. My sister watched helplessly as I screamed and squirmed. And it never really went away. Dr. said there'd be days like this, there'd be days like this my Dr. said!
Meanwhile, I can't believe it's December 10th. Seriously, we're 2 weeks from Christmas. Just wanted to point that out in case anyone out there (like myself) hasn't been paying attention. And, thanks to Mom and Kara, it's begining to look a lot like Christmas around this place!
A new, and potentially very exciting treatment option was presented to me last night. A friend of mine (Alex) introduced me to a man in Houston who was diagnosed with melanoma about 3 years ago. His disease had not spread, but was still considered dangerous. After having the tumor surgically removed he started taking a drug called ANVIRZEL. His bout with melanoma bascially ends there as he has had no evidence of reoccurrence for 2 1/2 years. However, the product he's endorsing has a remarkable story.
I was given contact information for an executive atNerium Biotechnology, the company that manufactures ANVIRZEL. I spoke to this gentleman for an hour or so discussing everything from the history and origins of the product to the research and data surrounding it's effectiveness. We also talked about some of the thousands of cancer patients that swear by it.
In short, ANVIRZEL is a non-toxic extract from the Nerium oleander. That's right, a plant extract. And although the product is not FDA approved, it is available through a source out of Honduras. There are several clinical trials currently being conducted (including a trial at MD Anderson) utilizing the oleander compound. It's also shown promise as an adjuctive therapy, or when it's used to in addition to traditional chemotherapies.
It's not quite a slam dunk but it's a pretty interesting find. I plan on discussing the concept of adding ANVIRZEL to my treatment regiment the next time I meet with Dr, Homsi. We'll see what his thoughts are and then determine our plan of attack.
Stay tuned.
I'm scheduled to return to MDA on Tuesday morning (12/14) to start round 2 of treatment. I'm ready.
Thanks to all for the continued love and support!
-Brian
12/07/2010 @ 10:00am
So glad the website issues seem to be over with. We're not exactly sure what happened but we're back up and running and happy about that.
Things continue to get better on this end although we encountered a little excitement yesterday. Lupe and I had to make a trip to the emergency room. Just a reminder: we're fighting cancer here! Nobody said it was easy!
I started feeling a little odd on Sunday morning. I was experiencing some chills and some cold-sweats. I also felt some pressure in my chest and was a little short of breath. My discharge instructions from the biochemotherapy indicated that a temperature of 101 or greater meant ER, ASAP. We monitored my temp Sunday evening and I was getting close but staying under the 101 mark.
On Monday morning, I definitely wasn't feeling great. Kara took me in for a scheduled blood work appointment and I just felt like something wasn't right. Nothing has been great but it seemed like I had been making good progress physically and then suddenly I started going in the wrong direction.
By Monday afternoon my temp had reached 101.2 so we made some calls to Houston to get their thoughts. The verdict was swift and strong; go to the emergency room!
Biochemotherapy weakens my immune system. If my immune system is weak, I may not be able to protect myself from infections, etc. High temperatures could mean infections.
We spent about 7 hours in the ER. I recieved fluids and antibiotics through and IV. They did some tests and some blood cultures to try and pinpoint my issue. I also had some xrays done to make sure there were no problems with the PICC line in my chest. Ultimately, we won't have any solid answers for a couple of days. I received a prescription for some antibiotics in case there is an infection of some kind. We were happy to know that my white blood cell levels were solid, which means I have an immune system! Crowd goes wild!
I'm back on track and feeling 100% better today. And I have a message for the disease that is attempting to hijack my body...
"You can run on for a long time... sooner or later God'll cut you down"
Thanks for that one, Mr. Cash!
-Brian
12/03/2010 @ 10:53am
The rumors are definitely true. It does get better. Incredibly, I can literally feel the difference with every day that passes. I can only hope that this continues, and I believe it will. I'm feeling as good as I have today. Good enough to get on here and write about it without feeling nauseous from looking at the screen for too long. Ahh, progress.
It's been a rather uneventful week. I've only left the house twice (both times for scheduled blood work). The blood work is to make sure my body is recovering favorably. On Tuesday, my platelet count was an unimpressive 48,000. Two days later (Thursday) we were up to 94,000. This is good. The platelets should continue to rise as my body continues to rebuild and repair. Ahh, yes... progress!
A fun fact regarding platelet production: Did you know platelets are produced in your bones? More specifically, in our bone marrow. Oddly, it's a bit painful. I'm mixing in some pain killers along with the nausea meds. Mom says I'm experiencing labor pains as I'm giving birth to the precious little platelets. How cute! And scary. But whatever, it's working!
Lupe, Kara, and I are having lunch today with Anne from Alpheus Media. They're the ones producing the LIVESTRONG video, documenting my journey. I'm excited to continue with this project and feel like I have lots of fun new experiences to share with them. Again, the basic thought behind this is to capture a real, authentic snapshot of what it's really like for a young person to experience what I am living. I'd like to believe that someone out there may benefit from actually seeing someone go through this, in the event that they are faced with something similar. I also feel that there may end up being some "accidental educational information" to remind others about things like the importance of sperm banking. Pretty exciting stuff!
I'm strugglng to put in to words the gratitude I have for everyone who's stopped by this site, and for those that offer the encouraging thoughts and prayers. Later today, it looks like we'll record our 4,000th visitor. I'm simply blown away at the support. I honestly feel the personal connection to every single person that shares or comments. Some of you, I haven't seen or spoken to in years. Some of you, I've never even met. It just doesn't matter. The connection is undeniable. And I am both humbled and extremely motivated that you are with me. We will win this fight!
All my love,
Brian
11/29/2010 @ 10:36am
WOW! (And I really mean that)
I'm home and we've made it through the first round of treatment. Remind me again who's idea this was?
I'm truly stunned at the magnatude of what just happened. I'm totally wiped out, and feel like I have been for a week. I'm nauseous. I can't begin to describe the nausea. It's making me nauseous just thinking about how to describe my nauseousness. Mothers of the world, if this is even close to what you experience while growing little babies, I'm sorry.
I'm fatigued. My body is not happy with me. I'm literally saturated with chemicals. Play time is definitely over.
I'm told I did well.
All I know is that today is going to be a little better than yesterday and tomorrow will be a little better than today. I'm down now. But I'm nowhere close to being out. And every little bit of feeling better, every little day that goes by, means one thing; I'm winning the fight!
I will update again soon.
Thank you all for the messages of love and support!
-Brian
11/26/2010 @ 8:37pm
11/24/2010 @ 7:34pm
We're well under way with the biochemotherapy. Just about finished with the second day of the 5 day cycle. I'm feeling ok. Making my way through it all.
My daily cycle goes something like this; Around 7:00pm they start the Vinbalstine which runs with a full 2 hr saline bag. Next comes the Cisplatin for about 30 minutes. After that is the Temador which is an oral (pill) med. Around midnight they stick me with the Interferon. That's right, stick me. Interferon is a shot that's given in my stomach. Sounds bad, but it's not terrible. Finally, the IL-2 is reloaded for another 24hr drip.
During the treatment, my vitals are checked about every 4 hours. To help prevent fever, they've got me on a tylenol schedule. There's also a consitent intake of anti-nausea meds which are much appreciated! I've also been asking for Ultrim to help with some headaches I've been getting.
The nurses and staff have been great! Definitely happy with the quality of care we're receiving.
Lupe attented and couple of classes over the last 2 days and is now certified to service and maintain the "PICC" line in my arm. This is great because now I don't have to have the line removed after every treatment. I can just leave it in and Lupe will make sure it's clean, flushed, and sterile. Awesome! Thanks baby!
This part isn't pretty. They're doing what they can to keep me comfortable but this treatment is very taxing on the body. I've gained almost 10 pounds in just 2 days. But, this is the fight! It's not Disneyland.
All in all, we're making it. One day at a time. Sometimes one minute at a time. But it's progress. I keep seeing theese images of the cancer cells getting demolished by the chemo drugs. Its a beautiful thing and plenty of motivation to keep on grinding.
Thanks again to everyone for the great messages of support! More updates coming soon!
-Brian
11/22/2010 @ 7:43pm
Well, here we go...
I'm here in my room at MDA. Lupe is with me and will be here by my side for the next 4 days. Comfy and cozy.
We were up and at it around 5:30 this morning. Our usual 3 hour drive got us here right on time for my 9:45 appointment with the blood-sucking needle. After my blood was sucked, we headed to the Infusion Therapy clinic. The thought of this clinic has been keeping me awake the past few nights. Please give a warm welcome to Mr. Periphically Inserted Central Catheter.
The "PICC" line is basically a tube that carries the chemo drugs from a port in my arm to my heart for distribution to the rest of my body. Although I recognize and appreciate the concept of protecting my veins from direct contact with the powerful chemo (which could cause awful things), the thought of installing this tube has been horrifying. Verdict: Not as painful as I imagined, but I wouldn't reccomend it for recreational fun.
Next, we had a couple of quick chest xrays to confirm that the PICC was properly positioned and then headed over to Admissions.
I'm now just waiting to get started on the treatment. The first round of drugs will begin shortly. I've met some of the staff members and am just trying to get settled in. I'll be in this room for at least the next 5-6 days. I'm stoked to have internet access!
So, this is the last post before the treatment begins. It's taken us a while to get to this point. Almost seems sureal. The calm before the storm sounds about right. I mean, this is serious business! Biochemofreakingtherapy.
Special thanks to my wonderful mom and awesome sister Kara for the incredible pre-Thanksgiving, Thanksgiving dinner last night. Turkey and all the fixin's (including an amazing homemade pecan pie). I'm a lucky guy! And Sis, hope the burn on your hand gets better soon :)
"You cannot choose your battlefield, God does that for you. But you can plant a standard where a standard never flew" - Stephen Crane
Love to all!
-Brian
11/19/2010 @ 9:21pm
What a week!
I'm home and settled now after 5 days in Houston. When I left here last Sunday morning, I was getting ready for a week of intense chemotherapy. The chemo was postponed after four lesions were discovered on my brain. IL-2 (one of the drugs I'll receive during the treatment) has a tendancy to cause swelling. If we started chemo, and the spots in my head swelled, things would have gotten really ugly. I'll pass on the ugly, thank you very much.
We shifted gears to address the brain concerns and are now back on track for chemo to start on Monday. In the meantime, my girl, my dog, and some ESPN!
A day after the Gamma Knife treatment and I'm feeling pretty good. No headaches, dizziness, nausea, blurred vision or any other side-effects to speak of. I have some soreness from the four screws they used to mount the "halo" yesterday and I've still got the stiches in my scalp and buttock from the surgery last week. Buy hey, you should see the other guy!
The Gamma went very well, according to the doctors reports. They blasted a total of 4 lesions yesterday. The procedure itself was totally painless. (Not so much for the cancer!) The worst part was the titanium frame that was mounted on my head for much of the day yesterday. The frame was not designed for comfort. It's only purpose was to hold my head completely still while the Gamma was in action.
The Gamma Knife machine is basically an MRI machine on steroids. The doctors and techs input the coordinates of the bad guys and the machine prepares an automated plan. Before I was positioned into the machine, they were able to show me exactly how the plan would be executed and how long it would take. 48 minutes. The last order of business was what kind of music I wanted to hear during the procedure. I asked for some "old school country".
Just before we began, I made a quick announcement to everyone who was listening. I felt compelled to offer a formal apology in advance (to the cancer) for the a$$-whopping that was about to commence. I'd like to think of this as the official declaration of war.
They layed me down, mounted my head in place, and fed me to the machine. As I rolled in, Johnny Cash was belting out a live version of "Ring of Fire". Very fitting, I thought.
48 minutes later it was done. A silent, painless treatement to pound cancer tumors in my brain that I can't see or feel. Amazing indeed.
My mom was there waiting. As where my dad and stepmom (Cindy) who drove all night from Illinois to be there with me. The docs were happy with the results. They removed the halo (ahhhhhhhhhhhhhhhhhh) and an hour later I was headed back to the hotel.
A long day. A long week. And now for a moment of rest.
This is the fight.
-Brian
11/18/2010 @ 7:07pm
Just a short (but sweet) update.
The Gamma Knife treatment was successful! It was a long day, but a good day nonetheless. Man, it feels good to fight back. And today, we fought back in a big way! We kicked the crap out of some cancer!
I'm pretty exhausted and looking forward to some good rest. I will update again tomorrow with details from today.
Thank you for the thoughts, prayers, and well wishes!
-Brian
11/16/2010 @ 10:16pm
Another productive day in Houston. We met with Dr. Homsi for about an hour to discuss the "state of the state". Since he and I spoke on the phone yesterday there wasn't really any new info. We spent some time talking about the Gamma Knife procedure. He answered some questions I had about the upcoming biochemo treatment. We basically just chatted about where we are as of today, and where we're heading.
Dr. Homsi is a very deliberate man. It's clear that anything that comes out of his mouth is well thought out. He's consistent and prepared. And he shows a genuine interest in my well-being. He's visited this website and read some of the content and comments. He is a huge part of this fight and I feel very lucky to have him on my team!
The 2nd appointment today was with Dr. Chang in Radiology. He and I discussed the Gamma Knife procedure in great detail. He commented that the lesions in my brain were relatively small and there was no swelling around them. The thought is that we're getting them early. Early = Good!
I'll be admitted for the procedure at 6:15am on Thursday morning. I expect to be in the hospital for much of the day but I will be allowed to leave as soon as we're done. It's an out-patient procedure with very minimal risks. Seems weird to say that... zapping cancerous tumors in my brain with a giant radio-wave-blasting Yo Gamma Gamma Knife! What is this, The Jetson's?
If all goes as it should I'll stay overnight in Houston on Thursday and then be headed home on Friday. Looking forward to that! Lupe and I will return on Monday for admission for biochemotherapy. The fight is most certainly on!
I wanted to share some personal thoughts and perspective to finish for tonight. I've had a lot on my mind recently and OBVIOUSLY I've got a lot of crazy stuff going on right now. Many people who have joined my fight have commented on my positive attitude and strong spirit. It's interesting because I'm realizing the power I have to be a source of inspiration for others, but everyone who writes a message or shares some supportive words is actually inspiring me. It's like an Inspiration-Go-Round. And it's incredible to witness.
When we think "Cancer" we don't think "Hope" or "Love" or "Inspiration". We typically think "Death" or "Pain" or "Suffering". I'm learning everyday that cancer isn't about dying; it's about living! For patients, it's about appreciating what you have and truly embracing the beauty that is life. For people that know someone with cancer, it's a reminder that life is precious and that you can't sweat the small stuff.
I'm taking it all in stride but I am not in denial. I am aware of the odds that are against me. I also know that my attitude is my most valuable weapon. And it's one thing that I get to control, every day. But I will win because I've already decided that I can't be beat. And even if I get beat, I will not break. This is not my attitude or my mood. This is my will and this is my soul.
Thanks as always for stopping by!
-Brian
11/15/2010 @ 4:30pm
I'm sorry I haven't updated in a few days. I'm recovering nicely from the surigcal TIL harvest. Definitely feeling more and more like myself, especially in the last 24 hours or so.
Mom and I drove out here to Houston on Sunday morning. My first appointment was at noon yesterday to draw blood for tesing and research. They took a lot of blood. I mean A LOT. We're not exactly sure what happened but as they were filling the vials, I began to get very light-headed and even started to sweat a little. Before I knew it, they had Mom fanning me and holding ice packs to my neck. Another nurse came in and cracked open a very pungent amonia tablet that woke me right up. Meanwhile, the blood was still flowing and my arm was turning purple. We think they may have left the tourniquet on for too long. Anyway, I was feeling very woozy for a little while. A pretty adventurous start to the day.
Next, we headed over for CT scans. They poked me again to start an iv while I enjoyed a nice bannana barium cocktail. Ahh, nothing like a little bannana barium to get the party started right! Oh and I'm allergic to the iodine CT contrast so they hit me with a stiff dose of liquid woozy (or maybe it was benadryl) to prevent any reactions.
After all the fun we headed over to the hotel to get checked in. We had a quick bite to eat and then it was another shot of woozy (pain pill from the surgery) which then lead to adios Brian. Three woozy's and I'm out!
Today we were up and at it again around 7:00am. I had an MRI of the brain. This was another first for me personally. Quite an interesting experience. The machine is very loud and it shakes and rattles like a washing machine on spin cycle. It's almost unbelieveable that this machine produces such high-quality pictures. I had one set of pics with contrast and one set without.
That was all that was scheduled for us today. The plan was to be back at MDA tomorrow morning to put in a long line catheter. The catheter will be positioned in my arm and will carry the biochemo drugs into my body once we start the treatment. After that we would meet with Dr. Homsi and then start the admissions process.
Well, plans have changed (slightly).
Dr. Homsi called me this afternoon after reviewing my scans and MRI. Yes, my DOCTOR called ME. Not his assistant. Not a nurse. MY doctor. He picked up the phone and called ME. I think you catch my drift here but it means a lot to me that he called. Equally impressive was the fact that just over an hour after my MRI was done, he'd aready reviewed the information and had a plan ready to go. Anyway, Dr. Homsi (and I know you'll read this!), it means a lot to me. You're the man!
Ok, now the changes. Dr. Homsi said that the melanoma has appeared in my brain. We were hoping this wouldn't be the case but that's why the MRI was ordered and now we know. It turns out the brain is a pretty important organ. Although the spot is small, we're pulling out the big guns. We have to get this little guy before preceeding with the chemo.
Tomorrow I'll meet with Dr. Eric Chang. He's just a Havard and MIT grad that zaps unsuspecting tumors with his Gamma Knife. Yeah, no biggie. That's just how we roll! That's just how MD Anderson rolls. We find it, we zap it, we move on.
This "speed bump" will temporarily delay the biochemotherapy treatment. But not for long. Dr. Homsi believes we will be back on track early next week. This means I'll be sucking down chemicals for Thanksgiving, but believe me when I say that I have so very much to be thankful for. I'll gladly trade one holiday dinner for many, many more to come in the future!
Thanks to everyone for all the incredible notes and messages on the guestbook. It's an amazing feeling to know that you're out there and with me.
Love to all!
-Brian
Experience the GAMMA KNIFE here.
11/12/2010 @ 7:01pm
HOME SWEET HOME!
We left Houston yesterday around 6:00pm and got home a little after 10. Some rush hour traffic and an interesting navigation system "glitch" added a bit more time to the trip, but we made it safe and sound. It was great to sleep in my own bed (even if it does feel like someone stabbed me in the forehead and in the buttock). I'm actually feeling much better today and even moving around a little bit. The next 72 hours are all about one word: RECOVERY!
It's a quick turnaround back to MDA on Sunday morning. I'm recouping from the surgery and also preparing for the biochemotherapy that is scheduled to start on Tuesday. I can feel that I will be pushing my body to do a lot. When they say aggressive treatment, they really mean it! But, I'm feeling good and up to the task! You know, this cancer guy really barked up the wrong tree... and now somebody's going to pay!
One last thought before I go. Anyone who knows me likely already knows this. For those who don't know, I am so blessed to have the most amazing woman by my side through all of this. Lupe is an absolute machine these days. I'm not sure how I got so incredibly lucky but she shines the brightest when I need her the most. If you follow my journey for any amount of time you will surely hear me mention her regularly, but words simply cannot describe the tireless love and care she provides. I love you, baby!
Enjoy your Friday night! Thanks, as always, for all the love and support! I love reading the messages!
-Brian
11/10/2010 @ 6:02pm
I am happy to report surgery day was a success. We checked in at 9 am. Got taken back to pre- op around 10:15 and Brian was taken in to surgery around 11 am. Surgery did start a little late, but it ended faster than the estimated time given of 2 hours. Two tumors were taken out for harvest of the TIL. The doctor seemed satisfied with the amount of tissue taken, approx 3 grams of tissue. He stayed in recovery for about 2 hours and he came out of anesthesia and regained his strength. We are back at the hotel resting. He is feeling a little groggy but other wise feels great. No pain, good meds and some soup on the way! As suggested by the doctor we will stay in the area until Friday morning in case of any complications. Brian sends all his love and again thanks everyone for all their love and support.
xoxo Lupe
11/9/2010 @ 2:48pm
Day 2 at MDA in Houston is in the books. We actually made it out of there a little ahead of schedule today, which was nice!
Something occurred to me today while Lupe and I were waiting for one of my appointments. It's something that I've noticed before, but it seemed way more apparent today.
I'm young.
And not just young in general. I'm 32 years old and In cancer terms, I'm a freaking baby. Sure, there is a children's floor at MDA and they are literally babies, but I'm a lot younger than most of the people I see throughout the center. Except for the staff members working there. Oh, and there are plenty of sons and daughters pushing their folks around in wheelchairs. But, I was reminded again today that I am young. And I am healthy and strong and ready to fight like hell!
Today, I went through an assessment to make sure I'm able to receive anesthesia during the surgery tomorrow. No issues with that.
Next came the pulmonary function (lung) testing. This was another first for me. The results were fantastic. My lungs are strong and healthy, in fact above average! I like being above average!
Last stop today was for x-rays of my chest. I'm interested to find out how those look.
Lupe and I are back at the hotel and relaxing. I'll be admitted for the surgical procedure tomorrow at a soon TBD time.
As always, thanks for the love and support!
-Brian
11/8/2010 @ 6:56pm
Well, it's a start...
First order of business today was an Echo Stress Test. This test is to measure the strength and durability of my heart. Interleukin 2 (one of the biochemo drugs on the menu for next week) has a tendency to make the heart speed up while it's being administered. In order to be cleared for the upcoming dosage use of IL-2, my heart has to be able to withstand 160 beats per minute.
The nurse injected me with a shot of Dobutaminethrough an IV in my arm. The drug worked swiftly, raising my heart rate to 166 bpm in less than 10 minutes. There were two other technicians monitoring me with ultrasound and an EKG machine. It was definitely a strange sensation. My heart was thumping hard and fast at almost 3x the normal pace, but I was just laying there and not even breathing heavily. Strange indeed. The heart is great and ready to roll! In fact, the EKG tech summed it up... "Beautiful".
Next was the consult with Dr. Gershenwald. After a quick physical exam we got right down to business. We talked in depth about the TIL trial and how to best "harvest" the cells necessary for this to work. We also discussed the reality of this trial, which is a standard reality for every treatment I'll undergo; there are no guarantee's that it will work.
I will undergo the surgery to remove a tumor in my left butt check (yeah, you read that right!) and at least one of the two tumors on my scalp on Wednesday. I'll be under general anesthesia and will remain here in Houston until at least Thursday afternoon.
Another note from today. I've granted MD Anderson permission to use my blood and any excess tissue removed from my body for analysis and study. This organization is thirsty for knowledge and they simply cannot simulate actual disease for their research. It was a no-brainer for me to allow this.
Tomorrow brings another full day of testing and examination as we gear up for the biochemotherapy. I will update again tomorrow evening.
Feeling great and looking forward to kicking some cancer a$$! I'm so grateful for the love and support! The FIGHT is on!
-Brian
11/7/2010 @ 3:50pm
What a beautiful day here in Austin, TX. Unbelievable weather for this time of year!
Lupe and I will hit the road around 4:00am which should put us in Houston by about 7:00am or so. My first appointment tomorrow is at 8:00am and I'll likely be at MDA until the early afternoon. I'm getting pretty anxious to get there and get things rolling.
I know it might seem a little odd, but I'm actually looking forward to surgery and the biochemotherapy. Obviously, it's not something I'd ever just sign up for and I'm certainly not a gluten for pain, but I really want to kick the crap out of this stuff. I'm tired of wondering if it's growing or continuing to spread. It's taken a lot of time and effort just to get access to these procedures. My patience is running low but I know we're really close now.
Still feeling great, physically. Lupe, Mom, and I are convinced that the tumors on my scalp are shrinking visually. It's tough to say if that's true or not but I'm not in any pain, which (I've been told) is a good thing.
Thanks to all who have left messages on the guestbook. I love readin them and it means so much to me!
-Brian
11/6/2010 @ 12:06pm
First off, thanks to everyone who has signed the Guestbook. The comments and messages are a clear reminder of what I'm fighting for. I'm so humbled by the love and support.
COUNTDOWN TO HOUSTON: We're now just two days away from returning to Houston. Very busy day today and tomorrow but I will continue to update when I can.
-Brian
11/5/2010 @ 3:36pm
Interesting article from AOL Health: The Anti-Skin Cancer Diet
11/5/2010 @ 1:47pm
A few weeks ago I met with an executive of theLIVESTRONG Foundation to discuss some projects they were working on. I have become very intrigued by LIVESTRONG recently as I am learning more and more about who they are and what they do.
Most of us know that LIVESTRONG was created byLance Armstrong, a 7 time Tour De France champ that defied the odds by beating testicular cancer. His cancer had spread to his brain and lungs, and required surgery and extensive chemotherapy to overcome. He's a global advocate and source of inspiration for cancer patients and survivors.
Today, the LIVESTRONG Foundation offers an incredible array of support services for cancer survivors and their families. Everything from prevention to detection to treatments and clinical trial access, physical therapy and rehab, nutrition and dieting, support groups and psychiatry. It's actually really amazing and I think it's one of those things in life that you really don't know how awesome it is until you actually need it. Once you discover it you find yourself compelled to do more.
Anyway, LIVESTRONG has asked to feature me in a documentary that will be used to spread awareness about melanoma and also to offer some comfort and knowledge to others who have been diagnosed. The video is being produced by Alpheus Media. They've interviewed me on camera and have also given me a camera to document my day-to-day life. The concept is to not just talk about it, but to actually show what it's "really" like to go through something of this magnitude.
The fact that I've joined the ranks of such prominent figures as Gene Simmons, Kim Kardashian, and "The Situation" won't go to my head. Don't worry.
Thanks!
-Brian
11/4/2010 @ 12:21pm
Hello everyone! I wanted to start with some news regarding my treatments and an update on where we are.
It's now been almost a month since my official diagnosis of stage 4 melanoma, and nearly 7 months since the first occurrence. I'm in good spirits. I'm feeling strong and healthy, physically. I'm definitely ready to get started with treatments.
I will be starting my fight at MD Anderson Cancer Center in Houston, TX under the care of Dr. Jade Homsi. MDA is widely regarded as the absolute best cancer treatment center in the country. They have many treatment options available and have exclusive access to many cutting-edge clinical trials. The fact is there is no cure for my disease but we are hoping to find treatment that will allow me to live a normal, healthy life.
My next appointment is November 8. I will be meeting with a surgeon to discuss a clinical trial called "TIL". This trial extracts cancer-fighting t-cells from my body, ships them to the lab, multiplies the cells, then pushes them back into my body to overwhelm the melanoma. This treatment is effective for about 50% of those who've tried it. The challenge is actually getting the cells to grow outside of the body. We'll extract the cells on November 10 and then wait 4-6 weeks for them to develop.
In the meantime, I'll undergo my first round of biochemotherapy. This is a combination of three standard chemo drugs and two immunotherapy drugs given simultaneously through a port in my chest. I'll be in the hospital for about 7 days and under close observation. This is considered a very aggressive treatment which sounds good to me! I'm scheduled to begin November 15.
I'll update as we get closer, and will continue the updates throughout the journey. Thanks for the love and support, and welcome to the fight!
-Brian
What an amazing weekend!
I'm running out of adjectives to describe the LIVESTRONG Challenge we just experienced here in Austin. It's difficult to explain the power, the magnitude of surrounding yourself with thousands of people, from all over the country (and the world), united for and by a single purpose.
My experience started on Friday morning when I arrived at the LIVESTRONG Village downtown. The event partners and sponsors were already in full swing setting up their booths and displays. The energy was building. I grabbed an iced coffee from Juan Pelotaand headed over to the packet pickup area.
An hour or so later the Village was buzzing with supporters, Challenge participants, volunteers, and others. It was organized, efficient, and well executed.
Over the next 6 hours, I was posted next to the LIVESTRONG Tribute Wall. I met cancer survivors, sons, daughters, moms. dads, sisters, brothers, aunts, uncles, friends, and everything in between. I hugged, shared stories, and even met with some folks that were familiar with my story. We were all connected by cancer. It was special. Watching all of these people come and go as they checked in for their run or ride, knowing that each of them had a similar (yet unique) purpose for being there... it was a actually quite incredible.
I returned to the Village on Saturday for a couple more hours of volunteering. It was more of the same.
Sunday was our big day! The plan: ride the 20 mile course and live to brag about it.
Team Fight Like Hell took our positions. Chris, Parke, Joe, Erica and I on the bikes and Lupe, Mom, Kara, and Jada on the finish line.
After some technical difficulties were addressed (Parke and his three flat tires... yes, THREE... before the ride started!), we were off and riding. Being out in the beautiful Texas Hill Country, on a bike, surrounded by friends and thousands of others, is just flat-out good for the soul. Doing something healthy and challenging for the benefit of so many is simply euphoric!
We completed the ride as a team, with Lupe handing me the traditional yellow rose as I crossed the finish line. I felt so grateful. Grateful for my family and friends, those who support me and my personal fight. Grateful for the fact that I could get on a bike and finish a 20 mile course. Grateful for the generosity of all those who donated and helped us raise over $5,000 for LIVESTRONG. And grateful, of course, for all those who made the event possible.
After the ride, we all hung out a bit and celebrated our team's success. I also got a chance to catch up with Doug (@LIVESTRONGCEO) for a bit at the finish line and watched as Lance Armstrong came flying past us. What an incredible day!
QUICK NOTES:
- Lupe handed out 2 yellow survivor roses on Sunday; one to me, one to Lance. Awesome!
- My team and I started after Lance and finished before him! The fact that we rode 20 miles and he rode like 1,000 is irrelevant.
- The event raised over $2.5 million for the fight against cancer. Over 4,300 runners and riders participated.
I'm off to Los Angeles tomorrow evening for another appointment with Dr. Hamid. It's a check up, no new scans until November. Feeling great! Blessed to continue living, strong and happy!
Much love to all!
-Brian
10/6/2011 @ 1:34pm
I'm stepping out of the typical "update" box today. I think the time has come to introduce some of the things I'm doing (other than pills and surgeries) to combat melanoma. This is not meant to be medical advice and there is no hidden agenda here. The fact is, I feel like I'm creating the ideal environment for my body to focus it's optimal attention on battling the cancer. I've been meaning to blog about this for some time now, especially considering how well I've been feeling.
I'm definitely not a doctor, but over the past 18 months I have come across an overwhelming amount of information that has led me to one clear conclusion; cancer really sucks! Divine, I know.
On the other hand, there is another bit of truth that some might not know... our bodies are amazingly well equipped to handle just about anything.
At some point, in my "rubber-neck" of a mind, I began putting 2 and 2 together. Over the next couple of updates, I'm going to attempt to describe each of the 4 elements of my assault on cancer: Diet and Nutrition, Physical Exercise, Power of Purpose, and Relaxation. I don't claim to be an expert but here it goes...
Step 1: DIET AND NUTRITION
One of the simple facts about melanoma is that it thrives in a weak immune system. This is the theory behind IL-2 and interferon based treatments. These are considered immunotherapies, designed to boost and enhance your bodies immune system. In my humble opinion, there is just no way that these enormous pharmaceutical companies, with all of their studies and research and intelligence, would spend the time, energy, and resources to create drugs that boost our immune system unless boosting our immune system played a significant role in fighting melanoma.
And if some is good, more is better... right?
After my chemo sessions were finished (and food no longer tasted like cardboard), I began focusing on what I could do to boost my own immune system.
I started to change the way I thought about food. I researched different ideas about what to eat and why. Ultimately, I stopped worrying about how things were going to taste and started to judge food solely by it's impact on my body. What I found was that the better I ate, the better I felt. And the better I felt, well, the better I felt!
I stopped eating red meat, pork, chicken, and turkey. It's not political. A doctor didn't tell me to. I don't feel sorry for the animals. It's not overly complicated. Most of the meats we eat are loaded with hormones, additives, steroids, antibiotics and other crap that I cannot readily identify. I've read plenty of reports that directly connect red meats to cancer. I made my own decision to cut these items out of my diet. Animal fats are difficult to digest and have things in them that I probably don't want to eat. Period.
And yes, I cheat. I see an In & Out and I lose control. So what?
Next, I cut out as much processed food as I possibly could. My thought was that I wanted to eat foods that were as close to their original form as possible. Preservatives are designed to prevent foods from breaking down. When I eat, I don't want my body to stress itself out trying to break down what I just put in it. Instead of slowing things down, my thought is to simply fuel my body to continue it's main objective which is kicking cancer's ass.
I stopped drinking alcohol for a couple of reasons. First, I have disease in my liver. Again, I'm not a doctor, but it only made sense... if my liver was already in danger, why do it any more harm? Secondly, going out and getting hammered isn't quite the kind of FIGHT LIKE HELL that I'm looking for. Alcohol is fine and dandy for responsible adults. It helps white people dance, etc. No worries, no judgments. It's just not in my plans for now.
Another main goal was to eliminate unnecessary sugars and salts. Did you know that when you do a PET scan to measure the activity of cancer tumors, they inject you with a radioactive sugar? Sugar because it somehow "sticks" to the cancer, radioactive so it shows clearly on scans. Cancer attracts sugar. Sugar likes cancer. This isn't freaking Love Connection here!
So, after cutting all of these things out of my daily routine, I found myself feeling really... hungry!! Here's what I do now:
In the morning, depending on what's going on, I try to start off with an Emergen C drink. It's a blast of vitamins and minerals. It's quick and painless.
Next, I'll mix up either a protein shake or fruit smoothie. These two are so quick and so easy. If you think you don't have time to do this, your priorities may need adjustment.
Here's the protein shake: take 4-5 ice cubes, 3 oz of water, 1/3 cup raw oatmeal, 2 spoonfuls of natural peanut butter, 2 spoonfuls of flax seed, a scoop of protein powder, and a banana. Put it in your blender. Hit start. Wait about 30 seconds. Stop the blender, take off the lid and drink it. Rinse the hopper and it's ready to go for tomorrow.
Fruit smoothie: take 4-5 ice cubes, add fresh or frozen fruits (I like bananas, strawberries, blueberries, and oranges), add an ounce or two of whatever fruit juice you have. Blend it up for 30 seconds. Stop the blender, take off the lid and drink it. Rinse the hopper and it's ready for tomorrow.
Breakfast done.
I'll be hungry again soon because my body isn't laboring to digest what I just put in. That's the way it's supposed to be! I'll snack on fruit or almonds to hold me over until lunch time.
The rest of my intake throughout the day consists of more fruits, fresh veggies (salads, etc.), fish, and maybe another protein shake. I'll eat pasta and other carbs. Again, the focus is on what the food is doing FOR me.
I always try to mix in a shot of Xyngular Global Fruit Blend and a Xypstix packet which includes aloe, usually in the afternoon. These guys are loaded with antioxidants and a long list of healthy nutrients.
I also take these supplements:
Milk Thistle - promotes healthy liver function
Calcium w/ Vitamin D - Calcium because I want strong bones. You can Google "Vitamin D melanoma" and go from there.
I have also bought into the benefits of turmeric.
So, there you have it. Just some basics on some of the things I'm trying with my diet. Lupe and I go to the grocery store often. It's not more expensive to eat healthy. It just takes a little more planning and a little more time because you actually make your own meals. And, if course, there is some discipline to it. I'm to the point now where I don't even crave crappy foods anymore. The best part is, healthy eating can't do anything but good. Empower your body (and all of its greatness) and it will work for you!
-Brian
9/23/2011 @ 4:17pm
At the end of the day, I just want to be ok. I want to be around for a long time. Sure, I'd love to inspire or maybe encourage or educate. I enjoy writing and sharing my story with others. I hope I'm lucky enough to make a positive impact. I feel a sense of purpose in this fight, like there's a reason for all of it.
But make no mistake... I want to live!
Advanced stage melanoma kills people. In fact, it kills most people that get in it's way. It kills lots of people who don't want to die. People with families. Young people, old people. People that don't even know it's there. People that fight it with everything they have until their last breath. I know I'm not special. There's not some magical sheild hovering around me that creates an immunity to the powerful grip of this disease. It's cancer.
I have cancer.
I think about it all the time. Like, ALL the time. If I'm being honest, maybe once every 30 seconds? Probably more even. It's not a panic. It's just persistent.
It's almost like trying to remember the name of a song or the punchline of a joke. It just permeates. It lingers. Except you don't dig deeper to try and find the answer, you just try to soften the anxiety by focusing on positives.
The positives are always there. You just have to want to find them.
In my situation it's a no-brainer. Given the choice of thinking about life or death, I choose life.
Death can take a number and get to the back of the line. Way back there.
No cuts!
And no talking either! I'm too busy living to hear your punk-ass anyway!
It's been nearly 16 months now since my first diagnosis. Nearly a year since it became "Stage 4". I'm learning to cope with the uncertainties that come with having cancer. I have the right people around me. Many of you that read this blog have become a huge source of hope and support. It means a lot to me. And I know it means an awful lot to Lupe and my mom and family as well.
The reality check when it comes to my battle is probably the same as with many other cancer fighters; CT scans.
The scans themselve are impartial. They always tell the truth. You love them, you hate them. They don't care.
The reality set in for me on Wednesday afternoon as I was waiting for Dr. Hamid at the Angeles Clinic.
Do I get to continue thinking about wedding plans with Lupe, getting back to my baseball lessons, riding my bike, spending quality time with my friends and family? Or am I back to the grind of accepting another failed treatment and figuring out what to do next to keep the melanoma at bay?
The scans are powerful little suckers!
Dr. Hamid had good news.
I'm continuing to respond well to the drug. The tumors are stable. There is nothing new or unusual. My brain is stable. The disease is still there but it's not progressing. I'll follow up again in about a month. New scans in 2 months.
And so goes the battle. Much ado about nothing? Perhaps. But in this fight, nothing can really be something.
Special hello to Raquel and Nancy! Hope your visits to Austin are a blast!
Love to all!
-Brian
9/16/2011 @ 1:52pm
Ok, brace yourself. I know it's only been a week since my last post. This kind of behavior can only mean one thing... baseball season is over.
Yes, it's true.
On Sunday, I will fly back to Los Angeles for my appointment at The Angeles Clinic. The appointment is significant for several reasons. First, it officially marks the end of my participation in the clinical trial for the drug now know as Zelboraf. I began this trial in April and have so far shown a positive response to the drug for the past 6 months. Because of the success of the drug, the FDA formally approved the pill for open use. Now that the pill is available by perscription, the trial is concluding. Because I remain without health insurance, I will continue to receive the drug through a program offered by the drug manufacturer, Genentech. However, my new hurdle will be figuring out access to CT scans, MRI's, and neccessary doctor visits among other things.
Speaking of scans, this visit to LA will also include new diagnostics. It's report card time. I normally try not to pay much attention to statistics but there is a general notion that the median response time for Zelboraf is somewhere around the 6 month marker. The truth is that this drug is still so new that predicting how long the positive response will last is virtually impossible. Exhibit A: Heather.
Nonetheless, this set of scans feels significant. Then again, so did/do all the rest of them. So, I guess it's not that significant. Or wait, it is significant. Hell, I'm confused. Whatever.
TEAM FIGHT LIKE HELL!
As previously noted, I plan to participate in next months LIVESTRONG Austin Challenge. Somehow we have now create a team of participants, including Chris (Benjamin) and a few friends here in Austin. We will be riding the 20-mile course. Besides promoting exercise and healthly living, the main focus of this awesome event is to raise funds and awareness for the fight against cancer.
Although LIVESTRONG waived my fundraising requirement (the event requires participants to raise at least $250 in order to ride), I decided to give it a shot and see what I could muster up.
On Tuesday, I opened up my personal fundraising page with a goal of raising $250 by October 16th. I posted a link on my Facebook page to spread the word and met the $250 in about 10 minutes.
Oh yeah!
In the past 72 hours I have raised the goal 3 times. As of this moment, my total sits at $750. I'm now pushing for an even $1,000. In addition, team FIGHT LIKE HELL (ok, me and Chris) has raised a total of $1,500. Our team goal is to raise $2,000 before the ride next month.
A HUGE thank you to everyone who has pledged so far! I have personally witnessed the impact of LIVESTRONG and am proud to be able to contribute to such an incredible foundation. If you're considering a donation, do it! $1, $5, $20... it's not a matter of how much or how little you pledge. It's about getting in the FIGHT! Cancer affects everyone in some capacity, at some point. If you can spare a few bucks, click here.
I'm looking forward to picking up my new bike this weekend and Riding Like Hell!
A really good friend of mine ordered some FIGHT LIKE HELL/HowsBrian.com bracelets. They're freaking awesome! I have black ones and red ones in three different sizes. If anyone is interested in the bands, please send me an email at brianrrose@hotmail.com.
Love to All!
-Brian
9/9/2011 @ 8:02pm
Home sweet home!
After another awesome baseball season in Wichita, Lupe and I packed up, said our goodbyes, and hit the road back to Austin. Such a bittersweet moment for both of us, for sure. Here is a short list of highlights from our nearly 5 months in Kansas:
(In no particular order)
- I made it back onto the baseball field less than 3 months after my final round of biochemotherapy and less than 3 weeks after my last Gamma Knife treatment
- I made it back onto the baseball field, period
- Lupe and I were together for the full season, surrounded by some of the most incredible people we know
- We made it through the full season without any unexpected developments or melanoma-related issues to speak of
- My health actually improved throughout the season per CT and MRI scans
- The clinical trial I participated in involving the PLX-4032 (now Zelboraf) continued to impress and the pill was formaly approved by the FDA
- Most people think that the pill improved my health but I argue that being back on the baseball field is the best therapy for me
- I formally proposed to Lupe
- The Wingnuts grinded through an insane 100-game regular season schedule, through record heat, including stops in 13 cities, and as far away as Winnipeg
- Winnipeg is in Canada
- The Wingnuts won the central division tittle and made the playoffs
- I realized that baseball will likely kill me before cancer will ever get the chance
- Lupe said yes
Again, that's the short list. All in all, it has been an amazing summer.
So, now what?
Lupe and I are settling back in here in Austin and looking forward to an adventurous next few months. It feels like we've got so much to do but it's really refreshing to be thinking about our future and things other than just melanoma. We are planning a wedding, setting up visits with family, and just getting back to "normal" life.
The fact that we are even focusing on these other things is a reflection of how far we've come in such a short period of time. I don't have to go back very far in this blog to be reminded of how recently it was that our days were dominated by treatments and therapies and surgeries. Not to mention the worry and stress.
It's not that these happenings are permanently gone. In fact, it's completely absurd to think that the worst is behind us. But, for now, life is really good. It's important as a cancer-fighting melanoma warrior to acknowledge the good. It's equally important (in my mind) to be grateful for the beauty in life.
The beauty in life is deciding where the out-of-towner's are going to stay when they arrive for your wedding.
That's not a pain in the ass. It's not an inconvenience or a problem.
Planning your future is a gift, not a hassle.
I'm very excited to announce that I will be participating in the LIVESTRONG Austin Challenge next month. I will be riding the cycling portion of the event and plan to pedal about 20 miles. I've got some training to do but it should be an incredible experience. There will be thousands of participants, including many cancer survivors and their families. I will be tweeting regular updates on my training progress as the event draws closer. @coachrose6
For more info about the event, click here. Last year, the event raised over $3,000,000.00 for the fight against cancer. Is that good?
It's a great day to be alive!
-Brian
8/1/2011 @ 2:18pm
Let's get right to it. Just the facts.
Last Tuesday I returned to Los Angeles to mark the end of cycle #4 of the PLX-4032 (which we will soon be referring to as Vemurafenib). As I was completing an even-numbered cycle, this visit also included fresh, hot-off-the-press CT scans and an MRI. On Wednesday I returned to the clinic for the results and a consult with the team at The Angeles Clinic.
The official verdict: I'm continuing to respond well to the drug. The tests are showing an average tumor shrinkage of 29% since I started this trial four months ago. The spot in my lung which started at approximately 2.1cm is now measuring 1.2cm. Another larger lesion in my liver that started at about 1.9cm is now 1.5cm. Additionally, my brain continues to be stable with nothing new to report.
Oh, how the tables are starting to turn. I have visions of these evil melanoma cells running for their lives, begging for a second chance.
There will be no second chances.
You had your chance. You've had your day in the sun (no pun intended). You've wrecked lives and families. You've terrorized and consumed for long enough. You've baffled science and doctors who have dedicated their lives to wiping you out. You've threatened me and the ones I love. You've pushed us to the edge.
You've attacked my lungs. I'm still breathing.
You've attacked my brain. My mind is strong.
I accept that I cannot beat you with my hands or this thing would have been over a long time ago. For that, you are lucky.
But I am stronger now than ever before. My family and friends are rock solid, standing right here with me. My spirit is firm. Damn, it feels good to kick your ass!
(Now back to our regularly scheduled update, already in progress...)
So, the news from LA was good. Great, actually.
I did also have a spot next to my left ear biopsied. I've had some swelling and some discomfort in that area for about a week. I'm still waiting on the results from the lab but I'm inclined to believe that it is some sort of ear infection. It appears to be making it's way behind my ear and down the side of my neck. I'm not overly concerned. I'll let everyone know if that changes.
For now, we continue forward with the trial and the Vemurafenib. I'm due back in LA toward the end of August and the cycle continues.
I feel so blessed to have such amazing support all around me. I feel like I say that a lot, but it's something that is always on my mind. The WIchita WIngnuts organization has been simply unbelievable. Our GM, Josh Robertson, has integrated our story into the operations at the stadium. The staff proudly sports their "HowsBrian" t-shirts at every Sunday home game. The shirts are actually being sold in the stadium gift shop.
Josh's wife, Monica, has introduced us to a product line called XYNGULAR. For the past couple of months I have added 2 of their supplements to my daily routine: The Super Fruit Global Blend and the Super Fruit Global Blend Crystals (XYPSTX). These 2 products are immune-system powerhouses! And Monica has been so gracious and generous in getting these products to us.
I also can't say enough about my manager, Kevin Hooper, and his family for all they do. In addition to the day-to-day support, Hoop's family has been instrumental in producing and distributing the "HowsBrian" t-shirts. I'm so grateful to have them in my corner!
Speaking of the t-shirts, they're the hottest thing going! And if anyone is curious about what these shirts really mean, you'll love this...
A couple of weeks ago, Hoop handed me an envelope with a coupe hundred dollars in it from shirt sales. The next day I went to the bank to deposit the cash. That same night I got on the computer and booked my next flight to Los Angeles using that money. That's it. Simple and straight-forward. There are other things as well (pathology bills, doctors office tabs, etc.) but the help with the travel every 28 days has been such a relief.
So, thank you to everyone who has purchased a shirt. Not only did you get an awesome shirt, you've also contributed directly to my ability to receive the care that I need. Like it or not, you're in the Fight!
I also want to say thank you to Ryan and Rise Above It. I filled out a piece of paper, had one of my doctors sign it, and they sent me a check to help pay for my travel. Please check out their organization and read their story. There's no catch. They just help people and we are grateful for what they've done for us.
LIVESTRONG continues to work for us behind the scenes, as well. I've written a lot about this foundation and Lupe and I continue to be inspired and encouraged by their work. It's a special connection and we are excited to get back to Austin next month to check in with everyone there.
So, that's it. I just wanted to offer some gratitude to some of the people we are lucky to have in our lives. In the face of some of the greatest challenges we are finding some of the simple beauty in the world. I'm convinced that this beauty exists within all of us. It's more obvious to some than to others, but it is there.
Thank you, cancer.
Now run for cover you sorry sonofabitch!
Fight Like Hell!
-Brian
7/5/2011 @ 8:55pm
Happy 4th of July!
I hope everyone had a wonderful and spirited holiday! Lupe and I are back home after spending a couple of days up in Kansas City. It was a very nice getaway. My team played a quick 2 game series against the KC T-Bones which drew nearly 15,000 fans in two nights. It was great to be able to spend the holiday with a couple of my favorite things: Baseball and Lupe!
On the first night in KC, I spotted a HowsBrian t-shirt in the crowd behind our dugout. I didn't recognize the man wearing the shirt but when I made eye contact with him he smiled and waived as if we knew each other. It was awesome to see one of our shirts in an another teams stadium.
The following night as we were finishing up our pre-game batting practice, fans started filing into the stadium and once again I saw the man wearing his HowsBrian tee. He and his wife and daughter were holding signs that they had made for the game. There was a "Go Nuts" sign and a "HowsBrian.com" sign. I had to find out who they were.
When batting practice finished, I walked up into the stands and sat down to chat with this great family. They introduced themsleves and told me a cool story about a trip they had made to Wichita and how they found about my story. The gentleman bought the shirt at our stadium gift shop along with some other Wingnuts merchandise. He has some family history with cancer and took a personal interest in our fight. I was really touched by their kindness and support and I hope that they read this with a smile!
I am still feeling really good as I continue with the trial pills. Very minimal side-effects. Last week was my scheduled trip to Los Angeles marking the end of cycle #3. My blood work looked great and the physical exam went well. All in all, nothing really new to report. I've got new scans and MRI coming at the end of July.
The latest reports on the PLX-4032 continue to impress and inspire. As the drug moves towards approval from the FDA, the word is definitely getting out about the potential of this treatment. Doctors are now researching the effectiveness of the drug when combined with other therapies. I can only hope that the momentum will continue and that the science will continue to advance toward a cure.
Until then, we will continue our efforts to educate, advocate, and FIGHT LIKE HELL!
In other exciting news, Lupe and I will be featured in the upcoming issue of the LIVESTRONG Quarterlymagazine. A couple of months ago we were approached about sharing our story with the publication in a section called the Cover MVP. We (of course) were more than happy to get involved. I will update with more information as soon as I learn more. You can also learn more about the magazine atLIVESTRONG.org.
I was also interviewed today by a local TV station. They are putting together a piece that will be broadcast on there Sports Sunday show here in Wichita. They have also agreed to put it up online so that everyone will be able to see the broadcast. I will update with all the airing information as soon as I get it.
There is no real master plan here, but I feel very lucky that I continue to be presented with opportunities to share my story and experiences publically. I suspect that my positive nature and good attitude have something to do with this. But I continue to be motivated by the relentless resolve that I am going to beat this disease. I know that there is a long road ahead with many challenges waiting in the weeds. But I will win. And I invite the attention of others to watch me do it and maybe even gain something themselves by experiencing this with me.
I also embrace the opportunity to spread the word about protecting our skin. I hope that everytime someone reads these updates or an interview or sees a piece on the news, etc., they remember how important it is to wear sunscreen and to get check-ups regularly. Skin cancer is a very serious and very real issue. The facts are undeniable. And if you think it can't happen to you, just give me a call sometime and we can chat.
Thanks to all for the love and support! I am strong and life is good!
-Brian
6/27/2011 @ 12:27pm
A preacher is caught in a heavy rain flood. The water is up to his waist when a small boat approaches him and offers to help.
"No, thank you", the preacher says. "I'm a man of God, and He will save me."
The water continues to rise, now nearly at his chest when a second boat passes by. A man in the boat calls out to the preacher, pleading for him to get into the boat.
"God will save me. I have faith in Him."
Now the water is over-powering the preacher. He is struggling to stay afloat, struggling to breathe. A third boat approaches and begs to help.
The preacher resists, "God is my savior. He will not fail me."
A few short minutes later, the preacher is dead. He has drown in the floods.
The preacher appears before God in heaven.
"But, God. I was sure that you would save me. I held onto my faith until the very end. I believed. How could you let me die?"
God replied, "I sent you three freaking boats, you idiot! What else do I have to do???"
Opportunity is what you make of it. It's not always clear and obvious. Having the courage to grasp the opportunity is what seperates those that are doing from those that wish they were doing. When opportunity comes, you must be ready and willing. If not, you can't look backward and wonder why nothing good ever came your way.
I am continuing to tolerate the meds very well. I feel great and am set to return to Los Angeles on Wednesday for a check up. Although I won't get new scans again until late July, I know that the drugs are working.
I only had a few moments to write today, but I will follow with another update tonight or tomorrow.
Thanks for the love and support as the Fight continues!
-Brian
6/2/2011 @ 11:50pm
Our definition of "good" news has been slightly modified over the past 7 months or so. Lupe and I have come to realize that as long as there is nothing overly horrible or catastrophic being presented to us by a doctor, that is good news. But, truthfully, there is still a huge difference between mildly average, non-terrible news and truly good news.
Today, I am happy to report a piece of great news.
Because it's been nearly 2 months since my last update, I'd like to first fill in the gaps...
Lupe and I spent most of April at her moms house in Los Angeles. During that time, I began taking the trial drug known as PLX-4032. Initially, I was instructed to take 4 pills (960mg) twice daily. This is an extremely heavy dosage, but it is the standard starting point for all new trial participants. For the first couple of weeks I was feeling great. I was actually beginning to believe that the side-effects associated with the drug would perhaps leave me alone.
A day or two into my third week on the drug I woke up with a mild rash on the backs of my hands and kneecaps. Another day or so and I began noticing the rash on the tops of my feet. Shortly thereafter I began feeling some pretty intense flu-like symptoms. I would have the chills, then sweat, then chills again. Lupe was monitoring my temperature which was hovering around 101.
A couple of days with all of these symptoms and I was on the phone with the team at The Angeles Clinic. The decision was made to hold the meds until the symptoms were resolved. 24 hours after I stopped the drug I felt incredibly good. The connection between the symptoms and the drug was obvious.
After the rash and fever subsided, I was instructed to restart the meds. This time the dosage was dropped down to 3 pills (720mg) twice per day. I have been holding steady on this dose for nearly 6 weeks now with no significant side-effects. Well, except for the whole crushing the cancer side-effects! We'll get to that in a moment.
In early May, Lupe and I packed up and headed to Wichita. It's baseball season, folks! Melanoma or no melanoma, it's baseball season! 4 rounds of biochemotherapy, too many surgeries to remember, 2 Gamma Knives, and a partridge in a pear tree! If I'm walking and breathing, I'm coaching. It's a wonderful, beautiful, magical thing and being on a baseball field has never meant more to me. This is what winning the fight means!
Two days ago marked the end of my 2nd cycle on the PLX-4032. Every two cycles are capped by new CT scans and a new MRI. Yesterday, I received the results from the tests. Cue the GOOD NEWS!
It's tough to describe the feeling I got when my doctor entered the room and said "Brian, you're getting better."
Huh?
"The lesions are responding to the treatment. They're shrinking. And there are no new spots anywhere, including the brain."
Ummmmmm.... Ok? Waiting for the "but"....... Anytime now......
"It's good news today. All good news."
Right about then my awesome nurse, Rachel, chimes in "It's the BRAF pill! Of course it's good news!"
Meanwhile, I'm totally lost. Don't these people know who I am? I'm the Fight Like Hell guy for crying out loud! Good news? What the heck am I supposed to do with good news?
I don't have much experience with good news. I've been fortified to handle the not so good news. There's got to be a catch.
The fact is there is no catch. The existing lesions have shrunk by an average of 20-30%. There are no new tumors. My brain is stable. That's it.
I have a long way to go and this fight is FAR from over. There are no guarantees that these results will continue or how long the good news will last. But today the news is awesome! Today is proof-positive that there is victory in love and hope.
I promise to update more frequently, moving forward. I can only hope that this update was worth the wait.
We still have plenty of t-shirts ready to be shipped. I am so grateful for the strength, support, and prayers as we continue the battle.
-Brian
4/4/2011 @ 2:55pm
So, it occured to me that I haven't updated in a few weeks and I think I can explain why. You see, when I feel good I like to do things. And usually I like to do things that involve the outdoors, or baseball, or something active. If I'm feeling crappy (see: biochemotherapy, surgery, etc.) that's usually the time I would spend online and updating this site because I can't get out of bed and I'm totally stir-crazy. Anyway, it's no excuse. Just something to think about. In my case no news is probably good news. With that being said, here's the latest...
Lupe and I are here in LA staying at her mother's place for the next few weeks. We've been here for about a week now. Last week I had a full slate of tests (CT's, MRI, etc.) to finish off the requirements for acceptance into the new clinical trial. We also celebrated Lupe's birthday week, which includes her actual brithday and is conveniently surrounded by her birthday month. Good times, babe!
Today, it was follow up time at The Angeles Clinic. I met with Dr. Omid Hamid for about 20 minutes to discuss the new scans as well as the plan moving forward. The scans revealed no major changes from those taken last month. We covered the bases on instructions for the new drug I'll be taking and went over some potential warning signs, etc. to watch out for. The doctor seemed very upbeat. In fact, The Angeles Clinic as a whole seems to be very unimpressed with my melanoma. Not that anyone is laughing at me, but I think that they've probably seen it all. AND, they've seen first-hand how well this drug can work for people. They are very confident which is right up my alley because kicking cancer's ass is what I do!
After the consults, it was go time. I recieved my first dose of the PLX-4032. Each dose is four pills. I'll take a dose twice daily.
Here's the official melanoma scoreboard as of today:
Liver - Approximately 10 lesions, largest is roughly 2cm
Left Lung - 2 lesions, largest is roughly 2cm
Right Lung - 1 lesion, less than 1cm
Bone - Various lesions scattered. Very small lesions, but present
Brain - 1 lesion, roughly 7mm. I had this spot Gamma Knifed and it should fade
I believe that's the official count. I'll update periodically to track the progress of the drug. Again, the drug has shown a fantastic response rate in patients with the BRAF v600e mutation that I have. It's the drug's ability to sustain the results that is the biggest question. Stay tuned!
On another note, the first batch of HowsBrian t-shirts are now arriving to those that have ordered. Thanks so much for your patience and for the support! I hope everyone loves the shirts as much as we do! And for those who have not yet ordered a shirt, what are you waiting for??? We have plenty that are made and ready to ship today. They're awesome and all the cool kids are doing it (right, Auntie C!).
Thank you all for the continued love and support! The fight rolls on from California with an exciting new drug and the same FLH attitude!
Countdown to Wichita: 25 days!
3/17/2011 @ 12:27pm
Lupe and I enjoyed a taste of the SXSW experience last night as LIVESTRONG hosted an intimate live show at their headquarters downtown. Some great people and some amazing music made for a very fun evening.
There was a very touching moment last night that sticks out in my mind and I wanted to take a second to share. During a break from the music, one of the event organizers was introduced and took the stage to say a few words to the audience. The man is a loyal LIVESTRONG supporter. Although I don't know all of the specifics of his story, it was clear that the he had apparently lost his young son to cancer.
His strength and sincerity were incredible. There's a certain demeanor that develops in people who have been touched by cancer, particularly when the individual is talking about the subject. Sure, the hurt and the pain are present. But for those that have lived with the weight of this disease, with all of it's might, or for those who have seen up close the devastation that cancer is capable of inflicting, what emerges is a powerful and unbreakable spirit.
As we listened to this man speak, you could literally feel his spirit igniting the enitre room. His message was well presented, and well recieved. He made references to a musician's courage in getting up on a stage and saying the things we all wish we could. He pointed out the power in a good song to make us feel happy or sad, excited or calm. And finally, he presented the connection between music and the mission of a foundation like LIVESTRONG, which is to be heard and to be counted. To matter. To not simply sit in the corner afraid and without purpose. Instead, to stand up and speak proudly. In other words, FIGHT LIKE HELL!
The message transcends cancer or music. It's about taking pride in who you are and what you do. It's about acknowleging the adversity in life but not letting it paralyze your will or your soul.
I'm gearing up for a quick trip to Los Angeles to get things rolling with the clinical trial and then the Gamma Knife treatment next week. Also now on the horizon is getting back to Wichita for the summer, back to one of the REALLY IMPORTANT things in life: coaching baseball! :)
We're up to around 60 shirts sold now! Thanks to all who have ordered so far! It looks like the first orders will begin shipping next week sometime. I'm very excited to get them out and to hear what you all think.
Happy St. Patricks Day!
-Brian
3/12/2011 @ 10:14am
As mentioned previously, Dr. Homsi has reffered me to participate in a clinical trial out of Los Angeles. The trial involves a drug known as PLX-4032. The drug is not yet approved by the FDA but has shown some exciting potential in advanced stage melanoma.
I've spent lots of time researching this drug and other BRAF inhibitors. I thought I would share some resources and information for anyone interested in learning more. Once again I'm left feeling absolutely amazed by the science behind the treatment.
Here is Wiki's explanation of the drug.
In order for the drug to be effective, the cancer must have the BRAF mutation V600E. I have already been tested and verified.
From Plexxikon, the drug manufacturer: Recent report
Also from Plexxikon, the $935 mil purchase
While the drug has shown significant effectiveness in shrinking cancerous tumors, the concern is it's ability to sustain the results. Cancer cells apparently begin to mutate and perhaps develop a resistance to the drug over time.
We'll see about that.
Love to all!
-Brian
3/9/2011 @ 1:58pm
SHIFT: To change place or direction. To transfer or move around.
The fight against cancer is often times like trying to shoot a moving target. Specifically when the fight is with melanoma. Now, sometimes moving targets can be hit squarely and directly with instant, undeniable success. Other times the target might be missed completely. But, what about the in-betweens? The glancing blows? The "we think we hit the target but can't confirm the results"?
Welcome! It's great to see you! Come on in!
As I attempt to make sense of everything that is going on inside my body and what to make of this last round of scans, I'll start with what I know for sure: The cancer is still present and I have a new, previously unseen lesion on my brain. I suppose that is the bad news. I will undergo another Gamma Knifetreatment shortly to zap this new spot.
Because there is a new spot on the brain, the decision was made to hold off on round #5 of biochemotherapy. In fact, Dr. Homsi has decided that continuing the biochemo treatment would likely present more harm than benefit. So, for now, the week long, body crushing, kick the crap out of cancer (and the rest of Brian) cycles are over. Lupe and I are back home in Austin. And I'm not even nauseous!
My first reaction after hearing this news wasn't great. Why would we just stop the treatment before it was finished? The plan was to go 6 rounds. Although the side effects are clearly tough to deal with, I've been recovering and bouncing back nicely after each cycle.
But before I raised the white flag in defeat, I had to consider Dr. Homsi's more logical perspective. The reality is that biochemotherapy is an extremely aggressive, hardcore treatment with the potential to severely damage vital organs in my body including my heart, liver, and bones. After four rounds of this treatment we are not seeing dramatic changes in the disease. There has been slight improvements in some areas but there has also been slight progression of the cancer in other spots.
In my opinion, the success of this treatment has been the fact that the disease has been slowed down and virtually stopped from growing and spreading. I'm ok with the "don't let it get any worse" stradegy. Unfortunately, using biochemo to just manage the disease is not medically responsible. It makes sense, actually.
We will now begin exploring the world of BRAF inhibitors. Back in November we discovered that my melanoma contains a genetic mutation that opens the door for exciting new treatment options. Dr. Homsi has referred me to The Angeles Clinic in Santa Monica, CA and Dr. Steven O'Day. I'm in the process of connecting with these folks and opening a new chapter in the fight. More info and details coming soon!
I'm so grateful for the continued love and support as we continue this journey. I'm feeling good. Positive, upbeat, and as optimistic as ever. We rocognize that this battle is a marathon and it's important to pace ourselves accordingly.
I have to send a special thanks to all that have ordered the HowsBrian t-shirts. So far we've sold about 35 shirts. My goal is to get to 100 by the end of March. For those who've already placed orders, thank you for your patience as we work to get the first batch produced and shipped.
Again, 100% of the proceeds from this fundraiser will be used for expenses related to my fight with melanoma. The money we raise will help us with the medical debts we've accrued (and continue to incur) for services like CT/PET scans, consultations, sugical procedures, and pathology bills. The funds raised will also help with travel expenses to and from treatments, lodging for neccesary outpatient services, parking, etc. Also, if anyone has other ideas or suggestions for fundraising, we'd love to hear from you!
All the best!
-Brian
3/7/2011 @ 12:12pm
Here we go!
Lupe and I will be hitting the road shortly. We're due in Houston at around 4:00 today. After the standard blood work, I'll have a quick x-ray to make sure that my PICC line is still properly positioned. Assuming all is well, I'm scheduled to check in for an MRI (brain) around 9:30pm.
We'll spend the night at a hotel and a quick turnaround will have us back to MDA at 8:00am to check in for CT scans. Once the tests are complete we'll have a short break for lunch and then head over to Dr. Homsi's office for the results. The results are the name of the game in this business. Results are what this fight is all about!
After the consult with Dr. Homsi we've got a meeting scheduled with the Integrated Medicine Clinic at the MD Anderson Wellness Center. This is something I've been interested in for some time now. For us, it's an opportunity to learn more about some different types of treatments and therapies that are perhaps non-traditional. Things like accupuncture, massage, diet and natural cancer remedies. Even things like yoga and self meditation. The idea is to explore different concepts that can be added or combined with my current, more traditional treatment regimine.
Again, assuming everything goes well, I'll be admitted tomorrow night for round #5 of biochemotherapy.
I'm armed with some new tools this time courtesy of my new favorite book "PLANET CANCER". (Thanks Heidi and Christopher! We love it!) The book is written by cancer suvivors for cancer survivors and is chock-full of useful, relevant tips and information on virtually everything that a young cancer fighter (and their family/friends/caretakers) will likely encounter. I highly recommend the read for anyone who has been touched by cancer.
The t-shirts are now available! Thank you to all who have ordered so far! And thank you for your patience as our new mini production team goes to work. We have minimum order requirements from the silk screening company so it may be a couple of weeks before the shirts arrive at your door. Just know that we will get them to you as quickly as possible. And for those who have not yet ordered, you can click on the Online Store tab on the website menu. If you have any questions or any issues ordering, please let us know. Thank you for the support!
I'll update tomorrow evening with the results from the testing.
Take care and make it a great day!
-Brian
2/24/2011 @ 2:21pm
Well, here I am. Long overdue for an update. I've logged on several times but for some reason I just haven't been real interested in writing. I'm not exactly sure of why. Maybe I'm experiencing "writer's block".
The good news is that I'm really feeling great! Lupe and I returned from Houston last Monday (Valentines Day) following round #4 of the biochemo treatment. I had a pretty rough week last week as I started the recovery. The usual suspects; nausea and fatigue.
The treatment has become a bit predictable on some ways. I'm amazed at how my body responds so similarly each round. I guess I'm starting to get used to the physical issues associated with the chemo but the new challenge seems to be the mental wear and tear. There's just something about continuing treatment that you know is going to knock you down. As good as I'm feeling right now, I know that round #5 is just around the corner. And I know exactly what to expect. But the show must go on. The fight will continue!
We're due back at MD Anderson on March 7th. On tap is a new set of CT scans and MRI. We'll get the results and an update on the overall picture on the 8th and that night we're scheduled for admission for round #5.
We've been working on getting the t-shirts available. A couple weeks ago I got a chance to see some samples of the shirts and I am so excited to get them moving. We've had some issues with setting up a way for everyone to order the shirts but the issues seem to be resolved. We are ready to debut the shirts and will have the link setup within a few hours from now.
As for ordering the shirts, please feel free to order as many or as few as you'd like. The shopping cart system we've designed will be pretty simple and straight-forward. However, I would ask for a little patience because I get the feeling we may get bombarded with orders over the next few weeks. I expect some growing pains, but just know that we will get the shirts processed and shipped as quickly as we can. We've worked very hard to make sure that things will go smoothly with the ordering, etc.
Thanks to all for the contuned love and support. I'm so excited with the response we've gotten from the LIVESTRONG video. I'm continuing to realize the power of positive and how my fight is making an inspirational impact on others. Although my focus is soley upon my personal fight with cancer, the reality is there are millions of individuals around the world that are battling the disease everyday. I'm once again humbled to have so many great people in my corner that have taken a personal interest in my fight.
-Brian
2/7/2011 @ 9:12pm
I suppose some of you might be interested in how things went on Friday night. With all the hype leading up to the event it's almost hard to believe it's now over. But, I have to say, what an incredible night!
We arrived at the Hyatt around 5:30 and got ourselves signed in. We caught up with Chris D. who showed us around a bit before hauling me off for a sound check and prep for the big show. He also presented me with a framed copy of the LIVESTRONG Manifesto that included a personal note from Lance Armstrong.
Around 7:00, Lupe and I were escorted backstage and seated in a makeshift "green room". A few minutes later, Lance and his manager appeared and took a seat with us. We had a few minutes to chat before the show started.
I have always heard that Mr. Armstrong is a very down-to-earth and mellow guy. I can confirm that now. But the real story about this man is the power of his presence. He's a global symbol of strength and inspiration. A few moments with him tells you all you need to know.
We took our seats next to the stage and a few seconds later the screens lit up with the words "Fight Like Hell". Lupe and I were sharing a table with Lance, Sanjay Gupta (from CNN), Lance's manager, and a couple of their LIVESTRONG associates. The film began and the room fell silent.
Watching the film, in that moment, with hundreds of other people, suddenly put everything into perspective. Everyone in the room was locked in on the screens. The story is compelling and the film itself is very moving. It didn't matter than no one in the room knew who the heck I was. We were all there for the same reason. And the message/content of the film was very familiar for most.
It hit me during the last few minutes of the video that it was almost my time to take the stage. It wasn't quite a nervous breakdown feeling, but I was nervous.
The film ended and I was introduced. It felt as though the room errupted with applause. I was completely blown away by the welcome I recieved. I was so caught up that I think I may have forgotten that I had to speak. I definitely forgot everything I had planned to say. I had to wing it and just speak from the heart.
I said a few words and then shifted to introducing Lance. He joined me on stage for a handshake and then I returned to the comfort and safety of my table and my Lupe.
It was an incredible night that I will never forget. Interestingly, it wasn't just the film or the chance to spend some time with some famous people that I am most excited about. We met some really amazing people. People with stories of battles just like ours. Survivors, advocates, doctors, and so many more. Cancer warriors that walk the walk when it comes to making this disease a national priority. Folks that have inspired us in many ways.
<iframe title="YouTube video player" width="640" height="390" src="http://www.youtube.com/embed/i5KfySVkqyw" frameborder="0" allowfullscreen></iframe>
Hope you enjoy the video. There will be more to come as we continue the fight. Also, my speech and highlights of the evening will be available soon. I will post as soon as I get them.
Back to business (Houston) tomorrow. Round 4 is calling my name.
Thanks for your continued love and support!
-Brian
2/3/2011 @ 11:52am
Got cold?
I know it's not right for me to vent about 18 degree weather when people are digging their cars out of 3 feet of snow to get to work and it's -10 outside. I get it. But man, it's cold! Bitterly cold! I thought I lived in Austin, TEXAS.
We're all getting excited for the LIVESTRONG event tomorrow night. Lupe, Chris (Bonus Dad) and I were invited to a viewing/sneek peek of the video and I think I can speak for the three of us when I say, incredible! I can't wait to share it with all of you. It runs about 15 minutes and really brings my journey to life. The title of the film is Fight Like Hell. Not sure who came up with that but I sure do love it!
I'm feeling great. My body is healing and the pain is getting easier. My armpit is still sore but I suppose that's to be expected. I'm sure it will get better with time. It's very refreshing to feel well. Definitely a reminder that things can and will get back to the way they used to be.
With that being said, feeling this good can only mean one thing... it's almost time to go back to Houston! Round 4 of biochemotherapy is scheduled to start next Tuesday 2/8. While I'm slightly dreading the tough weeks to come, I sure do enjoy kicking cancers ass! I really believe in the treatment I'm recieving. It takes it's toll on me and knocks me down but I have these visions of these wimpy little melanoma cells getting their whole world rocked. I know that I will rebuild and recover. They, on the other hand, are being beat senseless and will be forced to submit. Dr. Homsi's got Weapons of Mass Remission and we're about ready to launch again! Little bastards. I hope they can hear me.
I get a bit fired up.
We all have the strength to win our battles. When we decide that our will is more powerful than our fear, we become unstoppable. I've always thought this but sometimes it takes extreme circumstances to truly believe in the power that we possess. Embrace the power.
I'm excited to see my friends Mat and Summer Wetzel who will be flying in tonight from California. They will be hanging with us through the weekend. They think 50 degrees is cold. It's going to be great! :)
-Brian
1/28/2011 @ 10:18pm
Everyday is better than the last. I'm still sore but considering it's only been a week since the procedure, I'm doing pretty well. I guess you just can't keep a good man down! At least not for very long.
I have been moving around a lot better, enjoying the improving mobility. It's definitely a recovery PROCESS. It's amazing how often we use our "core" or "trunk" in daily life without even realizing it. As I've mentioned before, I have 2 incisions on my abdomen and one on my lower back. Then there's the armpit fun. Just sitting down for too long or getting out of bed the wrong way and I'm quickly reminded that these wounds are not yet healed. Sleep has been decent (at best) but if I had to pick between pain and nausea, I'll take the pain anyday!
Today, Lupe and Chris joined me for a visit/tour of the LIVESTRONG facility in downtown Austin. What an incredible place. The more I learn about this foundation, the more impressed I become. Their mission and goals are very strong and straight-forward.
We had the opportunity to meet and chat with LIVESTRONG President and CEO, Doug Ulman. Doug's story is very inspiring. He's beat cancer three times, including two bouts with melanoma, and has become a leading advocate for cancer survivors around the world. In addition to his role with LIVESTRONG, Doug is also the Founder of the Ulman Cancer Fund for Young Adults, which (I've discovered) offers a wide array of support services designed specifically for young adults with cancer. Mr. Ulman, like many other folks employed by the LIVESTRONGFoundation, has a very personal connection to this disease and displays a genuine passion for helping people affected by cancer. It was a real pleasure to meet him.
The t-shirts are getting very close! I should have some samples early next week and we'll start production shortly thereafter. Still working out some logistics on how they will be ordered via this website but we will get it worked out and be on or way in no time. I'm really excited to see how they turn out!
I also wanted to take a moment to thank everyone for the continued support and inspiration. When we started this site 3 months ago, I never imagined the impact it would have on me. It's truly remarkable how the worst of circumstances can bring out the absolute best in people. I'm reading messages from folks that I haven't spoken to in years. And I'm not talking one or two or three years. I'm talking about people that I've lost contact with and haven't talked with in 10 and 15 years! I'm also connecting with others that I've never even met. Some that have very specific ties to melanoma. Some that are friends of friends. Some that just stumbled across this website and decided to leave some kind thoughts.
I'm honestly blown away. I'm so very grateful for everyone that visits this site and for everyone that offers their support. Even when you just say hello, it means everything to Lupe and I and my family. We didn't choose this fight but we will continue to battle everyday. And based upon the nearly 7,000 visits to this website, the hundreds of messages, and the outpouring of love and hope, we know we're not alone.
Thank you.
-Brian
1/22/2011 @ 4:48pm
Just a quick update as I'm recovering from the surgical procedure on Thursday. Everything went well. Dr. Gershenwald harvested cells from 2 spots in my abdomen, 1 spot in my back and from my left armpit. I'm feeling pretty good although sore when I move around. Fortunately, the incisions were not very deep so I should be feeling much better pretty quickly.
Thanks for the positive thoughts and the prayers! I will update again in the next day or two.
-Brian
1/17/2011 @ 4:26pm
This is so great! I love it when I turn on my laptop and actually feel like writing. And I have some good stuff to share. It's terrific! Seriously, it's great.
First things first. I went back in for blood work this morning and it looks like my body is once again repairing and rebuilding. Platelet counts are much improved and all other readings are stabilizing nicely. Not that I really need a doctor to tell me these things. I've grown so in tune with my body that I literally guessed what my platelet counts would be today... and I was spot on. 80,000. Lucky guess? I THINK NOT!
I feel better. I'm stronger with each passing day. My appetite is improving as the nausea gives way. I'm sleeping better and generally a bit more mobile. I am experiencing some of the bone aches and pains but nothing that I can't handle. I have a ways to go with the endurance but I did pass the shower test yesterday. (The shower test means getting up and taking a shower and not feeling like I might pass out from exhaustion before I'm finished) My fellow cancer warriors, you know what I'm talking about! The shower test is a huge deal. Who doesn't love a good shower? I know I do. I'm quite sure Lupe appreciates a fresh, clean Brian as well.
Meanwhile...
I spoke with Chris Dammert at LIVESTRONG last week about something very cool. Chris and his team are gearing up for an exciting event here in Austin set for Feb. 3rd and 4th. The event will bring together hundreds of LIVESTRONG partners, sponsors, and supporters from around the country. On Friday evening (Feb. 4) they are planning a wonderful dinner party for approximately 700-800 guests at the Hyatt hotel downtown. As some of you may remember, I have been the subject of a video that is being produced for the organization documenting my journey with cancer. This video will be shown at the dinner party to kick off the night. When the video is finished, the lights will be raised and yours truly will be standing on the stage. Before I even have time to get nervous, I will introduce the man of the hour; Mr. Lance Armstrong. It's an amazing opportunity to participate in a very special way to a foundation that does nothing but help people like myself and my family deal with this disease. I'm honored, flattered, and can't wait. I have made arrangements to have my portion of the evening video taped and will share the moment with everyone who's interested by way of YouTube!
Thank you for the love and support!
Fighting Like Hell...
-Brian
1/14/2011 @ 12:26pm
Once again, technical difficulties (with me and with the website) have delayed this update. Sorry it's taken a while but I think we've got a handle on things and we're now good to go.
This week has proven to be a tough one. If I'm ranking the recoveries following the treatments, this one has got to be the roughest so far. I got released from MDA on Monday with the news that my platelet count was already very low. The doctors actually wrote an order in advance for a platelet transfusion if my counts were to drop below 30,000.
One of the side effects of having these treatments so close together is the residual stress on my body. Every time I finish a round of biochemotherapy, I'm sent home with a lower platelet count than the time before. And even though my typical 2 week break in between treatments helps me to feel a bit better, my body is still being pushed. I'm thinking that some of that has caught up with me.
I had blood work scheduled for Wednesday morning. The results indicated my platelet counts had fallen to a very whimpy 17,000. I was sent over to have the transfusion right away.
I know that I'm making progress as far as feeling better but feeling better sure seems to be taking it's sweet time.
In other news, Dr. Homsi has decided to retry the TILconcept. This is very exciting as this treatment continues to show very promising results. My T-Cells declined to grow the first time we tried this and that appears to be the major hurdle with this therapy. But, everyone deserves a second chance and I'm optimistic that this time around will be better.
The first step is harvesting T-Cells from my body. This means surgically removing a cancerous nodule or lesion. We've identified the spot and have scheduled the surgery for next Thursday the 20th. It will be a relatively quick, outpatient procedure and we expect everything to go very smoothly.
Once the cells are removed, the MDA lab begins the process of reproducing the cells in mass quantities. It usually takes between 4-6 weeks to find out if the process was successul. Stay tuned.
The HowsBrian t-shirts are getting very close. It's looking like we will start taking pre-orders in the next week or so. We have to take pre-production orders because, honestly, I have no idea how many shirts to make. I will have a link up soon with all the information for ordering and a preview of what the shirts look like. I'm very excited to have these available and I can only hope that everyone likes them and buys them.
Thank you for the continued comments of hope and support!
-Brian
1/4/2011 @ 10:25pm
Ok, we've got news. I'll start with the same comment I heard when we arrived for our consult this afternoon... "Brian, you're not getting any bad news today".
Lupe and I are settling in to the room as I was admitted earlier for round 3 of biochemotherapy. It's become a familiar place and a familiar routine. For those that follow this blog, you'll know that the fact that I was admitted for treatment today is good news. I never thought I'd be excited about beginning a week of chemo treatment. Then again, I never thought I would need this treatment period.
So, Dr. Homsi's official update on my status is "mixed results". There are several spots in my body that showed some progression (that means the spots grew since the last scans). There is also evidence that some spots have shrank in size. However, the changes (both good and bad) are pretty minimal. We're talking millimeters here. Ultimately, I think we would have loved to see more signifigant reductions in the size of the lesions, but things could've gone a lot worse for sure.
I'm calling this day a success.
It's tough to get too excited, however. Melanoma is a mean and very persistent opponent. I must admit, I do enjoy pounding the crap out of this disease but I have a healthy respect for what the cancer is capable of. And knowing what it's capable of means (among other things) understanding and accepting the fact that it can be extrememly unpredictable. What's good today may be not so good tomorrow. This unpredictability keeps me level when it comes to getting too high or too low.
With that being said, I'm inspired today with the realization that I can fight back against this bully. And not just the kind of fight where people would say "he put up a good fight, but...". I'm talking about the rubber meets the road kind of fight that confirms without a doubt that this disease has weaknesses and volnerabilities that we can attack. It feels good to fight back. And if Mr. Melanoma thinks that we're anywhere close to being finished, boy is he in for a very UNpleasant surprise.
Lastly, I wanted to share a video that was put together by my Aunt Clair and the Rose family. I saw it for the first time a couple of days ago and was completely blown away by the powerful message of love and support. Please find the video here
Thank you for keeping us in your thoughts and prayers!
Round Three, FIGHT!
-Brian
1/2/2011 @ 12:27pm
Happy New Year!
Hope everyone had a fun and safe NYE 2011! I was personally very excited to turn the page to a fresh new year. Now, if I can just keep those resolutions!
Speaking of resolutions, I have some suggestions if anyone is interested in adding a couple to their list. #1 - Protect yourself from the sun in 2011. It sounds simple enough, right? Wear sunblock or a hat or something. #2 - Stay out of the tanning beds! It's like capturing everything harmful about the sun and focusing it directly to your skin. I know, I know, everyone loves the beautiful bronze tan. The question is, at what price? I would accomplish nothing with this website and with this fight if I didn't get the message out that the sun (and UV rays) are extremely dangerous. Be smart. And look out for your kids. Make sure they're protected whether they like it or not. Share my story and educate those who think it can't happen to them.
Well, here we are. Just a matter of hours left before our return to Houston. Lots on the agenda for the upcoming week. It all starts tomorrow with blood work and a full round of CT scans and MRI's. My doctors are calling it a re-staging.
I'd be lying if I said I wasn't having a little anxiety about the scans. On one hand, we could find out that the tumors are continuing to grow and the disease is still spreading. A scary concept, but a very real possibility with melanoma. On the other hand, the scans could tell us that the treatment is working and that the tumors are shrinking. You talk about some exciting news! Wow! Or maybe nothing has happened. Maybe there is no change. No news is actually GOOD news for me. At the end of the day, I recognize that there is no cure for my disease so keeping it from spreading and growing sounds pretty good. In fact, that sounds great!
After the scans are complete, I'll meet with Dr. Homsi on Tuesday afternoon to discuss results. The plan is to admit me for round 3 of biochemo following the meeting. I'm looking forward to a smooth week of treatment. And hoping and praying (as usual) that it's working.
I'll update once again when I have new news. Thank you all for the love and support! The fight continues...
-Brian
12/27/2010 @ 1:27pm
Ok, I'm back from the blood work. Labs look good. My immune system is returning nicely. The platelets are coming back strong. All in all, we're rebounding and rebuilding just the way we should be.
It occurred to me after glancing at my last post that I should elaborate a bit on what I mean by "feeling really good". I don't want anyone to get the wrong idea and I definitely don't want to misinform. It's just that how we feel is always relative, right? I might say I feel great, but in reality I might actually mean I feel great compared to having a screw driver shoved in my back. So, for accuracy purposes, allow me...
First off, I haven't needed nausea meds since last Thursday. Definitely a plus one in the "feeling good" category. I'm not feeling nauseous really at all. Now, my energy level is not great, but I did manage to get out of the house several times over the past few days for more than just trips to the doctor for blood work. Again, a plus. But I was not able to stay out long because I start to feel fatigued very quickly. Besides, it's scary out there. Especially the last day or two before Christmas. People get crazy. And I am simply not moving at the same pace or with the same intensity.
The next positive is lack of significant pain. Last time around, my bones ached once the platelets began to reproduce. I also tweaked my back getting out of my sisters car last time and felt an unbelieveable pain for a few days. This time, I have felt the familiar feel but it has not grabbed me with the same vigor. I'm happy to report that I haven't even needed any pain-relieving pills.
Also consider that I've managed to stay out of the emergency room and I think you'll agree that this has been a much smoother ride. I even asked my medical team if they had changed some doses this time around or something. They didn't. I'll take it!
Ok, on to the announcements...
First off, I must wish my incredible Grandma Judy a Happy Birthday! Gram is a huge contributor to this site and a HUGE source of inspiration for me. For those who don't know her, this woman is a symbol of strength, courage, and class. I'm proud to be her grandson and she is at the core of what I'm fighting for. Thank you, Gram and I hope you have an extra special day today!
I also wanted to announce that we are now just a few days away from releasing official How's Brian t-shirts. It's a project that has brought a team of fine people together and I'm very excited to see how it pans out. I'll have more details to share in the coming days but the moral of the story is that I will have t-shirts available for purchase and all of the proceeds from the sale of the shirts will go into an account set up for my family and I. The money we raise will help us with the costs of travel to and from Houston, lodging, and all other expenses associated with my treatment. Did you know that everytime I am admitted for a round of biochemotherapy, it costs roughly $60-$70 just for us to park for the week? I'm sure no one knew that but it's just an example. As you might imagine there are a variety of practical uses for a fundraiser like this, so please buy a t-shirt or two when they become available. It would mean a lot to my family and I.
Well, I think that's it for now. Thank you for the continued love and support!
-Brian
12/27/2010 @ 9:49am
Ok, it's been too long since I've updated. My apologies.
Today begins week two of recovery time. I've gotta say, I feel really good. Like, notably better than last time around. And it's not just today. I've been feeling much better (by comparison) since I got home last week. Am I getting used to the treatment? Am I just toughening up my act? I don't know. I'm going to credit the steady stream of positive thoughts and prayers, and the Holiday spirit! That's my final answer.
Speaking of the Holidays, we had such an amazing Christmas! My brother Clayton was home from the Air Force along with his girlfriend Stephanie. They joined Mom, Kara, Lupe and I here at the house for a few days of quality family time. It's become so much more special to me, sharing these times together. As a family grows and expands (as ours seems to be doing quickly) I am recognizing and appreciating the value of a simple meal together, or just gathering for some catching up conversation. It's really what these crazy holidays are all about.
Another thought that has stuck in my mind is just how fortunate I really am. With what I am dealing with health-wise, maybe it's easy to feel bad or throw myself a raging pity party. But I have so much to be thankful for. We all have much to be thankful for. And there is no time to wallow in the "what I don't haves". For me, I have so much support. My family. My friends. My amazing girlfriend. My baseball organization. My doctors. My How's Brian Army! I am lucky. And I am blessed.
I have to run to go get my blood work. I will update soon with a couple of very cool announcements.
Thank you for the messages! Thank you for being there for me and for enjoying this site!
-Brian
12/19/2010 @ 9:58am
You know, it turns out this biochemo stuff can be very tricky. There I was sailing through round 2 like a champ until... BAM... Saturday showed up and had to ruin the whole thing. The good news: it was really the only "bad" day of this round. The bad news: it was a really, really bad day. The one thing I'm certain of with this treatment is that it's totally and completely unpredictable. Having said that, these doctors and nurses always seem to know what's going on.
It's now day 6 which means we're technically finished. Last night I received my last doses of Interferon and Temodar. They'll monitor me for another day or so to make sure I'm somewhat stable and then it's back home to recoup and recover. I'm looking forward to that.
I'm feeling much better today, in a not feeling like I'm going to hurl every 10 seconds kind of way. I'll be taking a shower in a little while (talk about exciting!). I'm getting caught up on the Guestbook postings which, as usual, are so incredibly appreciated. All in all, I'm doing pretty good.
Looking ahead...
Right now the plan is for me to return to MDA on January 3rd for a new set of scans and brain MRI. What we see on those will determine our next move. If the tumors are shrinking, and the biochemo is working, we will stay the course and continue the treatment. If the disease has progressed, we will likely opt for something different. The proof is in the pudding!
I will update again once I get home and settled. Thank you for the continued love and support.
-Brian
PS: I just wanted to express a special thanks to Heather for sharing your knowledge and insight. Although we have never met, I can't help but feel the connection that this disease has created. I know we'll continue to correspond but I just wanted to point out what an inspiration you have become. Lupe has ordered items from your website. My family and I are grateful for your contributions to this site and wish you the absolute best in your fight!
12/14/2010 @ 2:48pm
There are times when I feel like I want the answers to all of my questions. And I want them right now, not later. It's very easy to loose yourself in the anticipation. When you're in the fight I'm in, you want to know; is ithe therapy working? Is it getting better? Is it getting worse? I have some concerns about the effectiveness of the biochemotherapy. I'm a young, active, strong man that has been overrun with toxins that have knocked me down. And I've come back for more. I've already commited to comming back for as many rounds as it takes. But will it really matter? Will it really work? I don't know for sure.
This is Hope.
I was informed yesterday that my T-cells were not succesfully grown in the lab. These cells were to be part of the TIL clinical trial. The odds were 50/50 that they could produce the cells. Dr. Homsi was dissappointed, and I'll admit Lupe and I were too. We had tried to manage our expectations, but it's human nature to get a little excited about the potential of this trial. It's not the last time we can attempt this, but for now it's a no go.
Sometimes Hope may not be enough.
I'm lying in bed in Houston. We started round two of treatment last night. Lupe has gone off to an art class offered at the Wellness Center here at MDA. I met a man on this floor, Mr. Flannagan (hope that's spelled right), today that has some ties to the Wichita Wingnuts and also the Fort Worth Cats baseball teams. I spend a moment or two chatting with him. Such a small world sometimes.
I'm on the same floor as I was for the first round. Everything seems familiar now. I know the routine. A few of the staff members smiled and appeared to remember me. Who could forget such a delightful patient? :)
We'll be hitting this thing hard through the weekend and my target discharge date will be Monday. For now, we relax and let the meds go to work.
I reminded myself today that I am in control of my attitude, everday. And not only that, I hold myself accountable to be positive and optimistic. Bad news doesn't become good news because we freak out when we hear it. No one wants to be dealing with cancer, or disease, or poverty, or what ever adversity life might throw our way. But every morning when I wake up, melanoma is sitting right there, staring at me.
Unbreakable, unrelenting Hope means I know one day he won't be there. And what a beautiful day that will be.
All of my best!
-Brian
12/10/2010 @ 11:43pm
I'm sitting here at the house with my friend Jeremie that flew out from California for a visit. Shooting the breeze, telling some old and some new stories. Tomorrow we'll be joined by another friend, Steve. As I'm now just a few short days from returning to Houston for round 2 of biochemo, it's really awesome to be able to spend some time with some good friends. The time means a lot. Having real friends means that even when you feel like you have absolutely nothing, you've got everything.
I am feeling good today. A little more energy. A little less fever. My only physical gripe is my back. I believe it to be more platelet "labor" pains, as previously discussed. Yesterday, while getting out of Kara's car, I felt as though I had literally been shot in the back. With a big gun. From close range. My sister watched helplessly as I screamed and squirmed. And it never really went away. Dr. said there'd be days like this, there'd be days like this my Dr. said!
Meanwhile, I can't believe it's December 10th. Seriously, we're 2 weeks from Christmas. Just wanted to point that out in case anyone out there (like myself) hasn't been paying attention. And, thanks to Mom and Kara, it's begining to look a lot like Christmas around this place!
A new, and potentially very exciting treatment option was presented to me last night. A friend of mine (Alex) introduced me to a man in Houston who was diagnosed with melanoma about 3 years ago. His disease had not spread, but was still considered dangerous. After having the tumor surgically removed he started taking a drug called ANVIRZEL. His bout with melanoma bascially ends there as he has had no evidence of reoccurrence for 2 1/2 years. However, the product he's endorsing has a remarkable story.
I was given contact information for an executive atNerium Biotechnology, the company that manufactures ANVIRZEL. I spoke to this gentleman for an hour or so discussing everything from the history and origins of the product to the research and data surrounding it's effectiveness. We also talked about some of the thousands of cancer patients that swear by it.
In short, ANVIRZEL is a non-toxic extract from the Nerium oleander. That's right, a plant extract. And although the product is not FDA approved, it is available through a source out of Honduras. There are several clinical trials currently being conducted (including a trial at MD Anderson) utilizing the oleander compound. It's also shown promise as an adjuctive therapy, or when it's used to in addition to traditional chemotherapies.
It's not quite a slam dunk but it's a pretty interesting find. I plan on discussing the concept of adding ANVIRZEL to my treatment regiment the next time I meet with Dr, Homsi. We'll see what his thoughts are and then determine our plan of attack.
Stay tuned.
I'm scheduled to return to MDA on Tuesday morning (12/14) to start round 2 of treatment. I'm ready.
Thanks to all for the continued love and support!
-Brian
12/07/2010 @ 10:00am
So glad the website issues seem to be over with. We're not exactly sure what happened but we're back up and running and happy about that.
Things continue to get better on this end although we encountered a little excitement yesterday. Lupe and I had to make a trip to the emergency room. Just a reminder: we're fighting cancer here! Nobody said it was easy!
I started feeling a little odd on Sunday morning. I was experiencing some chills and some cold-sweats. I also felt some pressure in my chest and was a little short of breath. My discharge instructions from the biochemotherapy indicated that a temperature of 101 or greater meant ER, ASAP. We monitored my temp Sunday evening and I was getting close but staying under the 101 mark.
On Monday morning, I definitely wasn't feeling great. Kara took me in for a scheduled blood work appointment and I just felt like something wasn't right. Nothing has been great but it seemed like I had been making good progress physically and then suddenly I started going in the wrong direction.
By Monday afternoon my temp had reached 101.2 so we made some calls to Houston to get their thoughts. The verdict was swift and strong; go to the emergency room!
Biochemotherapy weakens my immune system. If my immune system is weak, I may not be able to protect myself from infections, etc. High temperatures could mean infections.
We spent about 7 hours in the ER. I recieved fluids and antibiotics through and IV. They did some tests and some blood cultures to try and pinpoint my issue. I also had some xrays done to make sure there were no problems with the PICC line in my chest. Ultimately, we won't have any solid answers for a couple of days. I received a prescription for some antibiotics in case there is an infection of some kind. We were happy to know that my white blood cell levels were solid, which means I have an immune system! Crowd goes wild!
I'm back on track and feeling 100% better today. And I have a message for the disease that is attempting to hijack my body...
"You can run on for a long time... sooner or later God'll cut you down"
Thanks for that one, Mr. Cash!
-Brian
12/03/2010 @ 10:53am
The rumors are definitely true. It does get better. Incredibly, I can literally feel the difference with every day that passes. I can only hope that this continues, and I believe it will. I'm feeling as good as I have today. Good enough to get on here and write about it without feeling nauseous from looking at the screen for too long. Ahh, progress.
It's been a rather uneventful week. I've only left the house twice (both times for scheduled blood work). The blood work is to make sure my body is recovering favorably. On Tuesday, my platelet count was an unimpressive 48,000. Two days later (Thursday) we were up to 94,000. This is good. The platelets should continue to rise as my body continues to rebuild and repair. Ahh, yes... progress!
A fun fact regarding platelet production: Did you know platelets are produced in your bones? More specifically, in our bone marrow. Oddly, it's a bit painful. I'm mixing in some pain killers along with the nausea meds. Mom says I'm experiencing labor pains as I'm giving birth to the precious little platelets. How cute! And scary. But whatever, it's working!
Lupe, Kara, and I are having lunch today with Anne from Alpheus Media. They're the ones producing the LIVESTRONG video, documenting my journey. I'm excited to continue with this project and feel like I have lots of fun new experiences to share with them. Again, the basic thought behind this is to capture a real, authentic snapshot of what it's really like for a young person to experience what I am living. I'd like to believe that someone out there may benefit from actually seeing someone go through this, in the event that they are faced with something similar. I also feel that there may end up being some "accidental educational information" to remind others about things like the importance of sperm banking. Pretty exciting stuff!
I'm strugglng to put in to words the gratitude I have for everyone who's stopped by this site, and for those that offer the encouraging thoughts and prayers. Later today, it looks like we'll record our 4,000th visitor. I'm simply blown away at the support. I honestly feel the personal connection to every single person that shares or comments. Some of you, I haven't seen or spoken to in years. Some of you, I've never even met. It just doesn't matter. The connection is undeniable. And I am both humbled and extremely motivated that you are with me. We will win this fight!
All my love,
Brian
11/29/2010 @ 10:36am
WOW! (And I really mean that)
I'm home and we've made it through the first round of treatment. Remind me again who's idea this was?
I'm truly stunned at the magnatude of what just happened. I'm totally wiped out, and feel like I have been for a week. I'm nauseous. I can't begin to describe the nausea. It's making me nauseous just thinking about how to describe my nauseousness. Mothers of the world, if this is even close to what you experience while growing little babies, I'm sorry.
I'm fatigued. My body is not happy with me. I'm literally saturated with chemicals. Play time is definitely over.
I'm told I did well.
All I know is that today is going to be a little better than yesterday and tomorrow will be a little better than today. I'm down now. But I'm nowhere close to being out. And every little bit of feeling better, every little day that goes by, means one thing; I'm winning the fight!
I will update again soon.
Thank you all for the messages of love and support!
-Brian
11/26/2010 @ 8:37pm
Hi. This is Barbi. I’m Brian’s mom. I relieved Lupe last night and have just completed my first day of biochemotherapyspectatorship. Let me tell you, it is heart-wrenching. Being the mom of an active sports player and coach, I have been cheering Brian and his players on to victory for many years. I’m sure my enthusiasm and guidance from the bleachers or the audio-stream was helpful and made a difference in some way J
Today was a very different day. I’m sitting on a pullout chair-bed in a hospital room watching my son sleep/rest with some plastic tubes peeking out from under his blanket. Hidden is the line inserted into the inner side of his upper arm, visible are the lines connected to many bags of fluids hanging from a mobile chandelier. 10 bags to be exact. Some are dripping the biochemo drugs and some are dripping liquids to take care of the side effects. I’m glad he’s able to nap.
It’s very quiet here. The doctors, nurses, and other staff members are diligent, but quiet. The white noise is the moaning of the drip regulators, the a/c system, and a hint of a TV in the distance… unless someone is sick, like last night…
Earlier in the day we went for a “walk”. That consisted of sitting up, followed by standing, putting on slippers and robe, unplugging the drip machine, and carefully stepping down the hospital hallway with the chandelier in tow. He’s worn out (physically exhausted) in a few minutes, overexertion isn’t a good idea, we go back to his room, he’s glad to lie down and go back to sleep. I was thinking that he’s 32, but seems more like 92. He just tried to go for another walk. He got as far as sitting and standing, that was enough.
Dr. Homsi said that sometimes part of the fight is to let go and let the meds do the work. In that case, I quietly say “Go Meds Go!”
11/24/2010 @ 7:34pm
We're well under way with the biochemotherapy. Just about finished with the second day of the 5 day cycle. I'm feeling ok. Making my way through it all.
My daily cycle goes something like this; Around 7:00pm they start the Vinbalstine which runs with a full 2 hr saline bag. Next comes the Cisplatin for about 30 minutes. After that is the Temador which is an oral (pill) med. Around midnight they stick me with the Interferon. That's right, stick me. Interferon is a shot that's given in my stomach. Sounds bad, but it's not terrible. Finally, the IL-2 is reloaded for another 24hr drip.
During the treatment, my vitals are checked about every 4 hours. To help prevent fever, they've got me on a tylenol schedule. There's also a consitent intake of anti-nausea meds which are much appreciated! I've also been asking for Ultrim to help with some headaches I've been getting.
The nurses and staff have been great! Definitely happy with the quality of care we're receiving.
Lupe attented and couple of classes over the last 2 days and is now certified to service and maintain the "PICC" line in my arm. This is great because now I don't have to have the line removed after every treatment. I can just leave it in and Lupe will make sure it's clean, flushed, and sterile. Awesome! Thanks baby!
This part isn't pretty. They're doing what they can to keep me comfortable but this treatment is very taxing on the body. I've gained almost 10 pounds in just 2 days. But, this is the fight! It's not Disneyland.
All in all, we're making it. One day at a time. Sometimes one minute at a time. But it's progress. I keep seeing theese images of the cancer cells getting demolished by the chemo drugs. Its a beautiful thing and plenty of motivation to keep on grinding.
Thanks again to everyone for the great messages of support! More updates coming soon!
-Brian
11/22/2010 @ 7:43pm
Well, here we go...
I'm here in my room at MDA. Lupe is with me and will be here by my side for the next 4 days. Comfy and cozy.
We were up and at it around 5:30 this morning. Our usual 3 hour drive got us here right on time for my 9:45 appointment with the blood-sucking needle. After my blood was sucked, we headed to the Infusion Therapy clinic. The thought of this clinic has been keeping me awake the past few nights. Please give a warm welcome to Mr. Periphically Inserted Central Catheter.
The "PICC" line is basically a tube that carries the chemo drugs from a port in my arm to my heart for distribution to the rest of my body. Although I recognize and appreciate the concept of protecting my veins from direct contact with the powerful chemo (which could cause awful things), the thought of installing this tube has been horrifying. Verdict: Not as painful as I imagined, but I wouldn't reccomend it for recreational fun.
Next, we had a couple of quick chest xrays to confirm that the PICC was properly positioned and then headed over to Admissions.
I'm now just waiting to get started on the treatment. The first round of drugs will begin shortly. I've met some of the staff members and am just trying to get settled in. I'll be in this room for at least the next 5-6 days. I'm stoked to have internet access!
So, this is the last post before the treatment begins. It's taken us a while to get to this point. Almost seems sureal. The calm before the storm sounds about right. I mean, this is serious business! Biochemofreakingtherapy.
Special thanks to my wonderful mom and awesome sister Kara for the incredible pre-Thanksgiving, Thanksgiving dinner last night. Turkey and all the fixin's (including an amazing homemade pecan pie). I'm a lucky guy! And Sis, hope the burn on your hand gets better soon :)
"You cannot choose your battlefield, God does that for you. But you can plant a standard where a standard never flew" - Stephen Crane
Love to all!
-Brian
11/19/2010 @ 9:21pm
What a week!
I'm home and settled now after 5 days in Houston. When I left here last Sunday morning, I was getting ready for a week of intense chemotherapy. The chemo was postponed after four lesions were discovered on my brain. IL-2 (one of the drugs I'll receive during the treatment) has a tendancy to cause swelling. If we started chemo, and the spots in my head swelled, things would have gotten really ugly. I'll pass on the ugly, thank you very much.
We shifted gears to address the brain concerns and are now back on track for chemo to start on Monday. In the meantime, my girl, my dog, and some ESPN!
A day after the Gamma Knife treatment and I'm feeling pretty good. No headaches, dizziness, nausea, blurred vision or any other side-effects to speak of. I have some soreness from the four screws they used to mount the "halo" yesterday and I've still got the stiches in my scalp and buttock from the surgery last week. Buy hey, you should see the other guy!
The Gamma went very well, according to the doctors reports. They blasted a total of 4 lesions yesterday. The procedure itself was totally painless. (Not so much for the cancer!) The worst part was the titanium frame that was mounted on my head for much of the day yesterday. The frame was not designed for comfort. It's only purpose was to hold my head completely still while the Gamma was in action.
The Gamma Knife machine is basically an MRI machine on steroids. The doctors and techs input the coordinates of the bad guys and the machine prepares an automated plan. Before I was positioned into the machine, they were able to show me exactly how the plan would be executed and how long it would take. 48 minutes. The last order of business was what kind of music I wanted to hear during the procedure. I asked for some "old school country".
Just before we began, I made a quick announcement to everyone who was listening. I felt compelled to offer a formal apology in advance (to the cancer) for the a$$-whopping that was about to commence. I'd like to think of this as the official declaration of war.
They layed me down, mounted my head in place, and fed me to the machine. As I rolled in, Johnny Cash was belting out a live version of "Ring of Fire". Very fitting, I thought.
48 minutes later it was done. A silent, painless treatement to pound cancer tumors in my brain that I can't see or feel. Amazing indeed.
My mom was there waiting. As where my dad and stepmom (Cindy) who drove all night from Illinois to be there with me. The docs were happy with the results. They removed the halo (ahhhhhhhhhhhhhhhhhh) and an hour later I was headed back to the hotel.
A long day. A long week. And now for a moment of rest.
This is the fight.
-Brian
11/18/2010 @ 7:07pm
Just a short (but sweet) update.
The Gamma Knife treatment was successful! It was a long day, but a good day nonetheless. Man, it feels good to fight back. And today, we fought back in a big way! We kicked the crap out of some cancer!
I'm pretty exhausted and looking forward to some good rest. I will update again tomorrow with details from today.
Thank you for the thoughts, prayers, and well wishes!
-Brian
11/16/2010 @ 10:16pm
Another productive day in Houston. We met with Dr. Homsi for about an hour to discuss the "state of the state". Since he and I spoke on the phone yesterday there wasn't really any new info. We spent some time talking about the Gamma Knife procedure. He answered some questions I had about the upcoming biochemo treatment. We basically just chatted about where we are as of today, and where we're heading.
Dr. Homsi is a very deliberate man. It's clear that anything that comes out of his mouth is well thought out. He's consistent and prepared. And he shows a genuine interest in my well-being. He's visited this website and read some of the content and comments. He is a huge part of this fight and I feel very lucky to have him on my team!
The 2nd appointment today was with Dr. Chang in Radiology. He and I discussed the Gamma Knife procedure in great detail. He commented that the lesions in my brain were relatively small and there was no swelling around them. The thought is that we're getting them early. Early = Good!
I'll be admitted for the procedure at 6:15am on Thursday morning. I expect to be in the hospital for much of the day but I will be allowed to leave as soon as we're done. It's an out-patient procedure with very minimal risks. Seems weird to say that... zapping cancerous tumors in my brain with a giant radio-wave-blasting Yo Gamma Gamma Knife! What is this, The Jetson's?
If all goes as it should I'll stay overnight in Houston on Thursday and then be headed home on Friday. Looking forward to that! Lupe and I will return on Monday for admission for biochemotherapy. The fight is most certainly on!
I wanted to share some personal thoughts and perspective to finish for tonight. I've had a lot on my mind recently and OBVIOUSLY I've got a lot of crazy stuff going on right now. Many people who have joined my fight have commented on my positive attitude and strong spirit. It's interesting because I'm realizing the power I have to be a source of inspiration for others, but everyone who writes a message or shares some supportive words is actually inspiring me. It's like an Inspiration-Go-Round. And it's incredible to witness.
When we think "Cancer" we don't think "Hope" or "Love" or "Inspiration". We typically think "Death" or "Pain" or "Suffering". I'm learning everyday that cancer isn't about dying; it's about living! For patients, it's about appreciating what you have and truly embracing the beauty that is life. For people that know someone with cancer, it's a reminder that life is precious and that you can't sweat the small stuff.
I'm taking it all in stride but I am not in denial. I am aware of the odds that are against me. I also know that my attitude is my most valuable weapon. And it's one thing that I get to control, every day. But I will win because I've already decided that I can't be beat. And even if I get beat, I will not break. This is not my attitude or my mood. This is my will and this is my soul.
Thanks as always for stopping by!
-Brian
11/15/2010 @ 4:30pm
I'm sorry I haven't updated in a few days. I'm recovering nicely from the surigcal TIL harvest. Definitely feeling more and more like myself, especially in the last 24 hours or so.
Mom and I drove out here to Houston on Sunday morning. My first appointment was at noon yesterday to draw blood for tesing and research. They took a lot of blood. I mean A LOT. We're not exactly sure what happened but as they were filling the vials, I began to get very light-headed and even started to sweat a little. Before I knew it, they had Mom fanning me and holding ice packs to my neck. Another nurse came in and cracked open a very pungent amonia tablet that woke me right up. Meanwhile, the blood was still flowing and my arm was turning purple. We think they may have left the tourniquet on for too long. Anyway, I was feeling very woozy for a little while. A pretty adventurous start to the day.
Next, we headed over for CT scans. They poked me again to start an iv while I enjoyed a nice bannana barium cocktail. Ahh, nothing like a little bannana barium to get the party started right! Oh and I'm allergic to the iodine CT contrast so they hit me with a stiff dose of liquid woozy (or maybe it was benadryl) to prevent any reactions.
After all the fun we headed over to the hotel to get checked in. We had a quick bite to eat and then it was another shot of woozy (pain pill from the surgery) which then lead to adios Brian. Three woozy's and I'm out!
Today we were up and at it again around 7:00am. I had an MRI of the brain. This was another first for me personally. Quite an interesting experience. The machine is very loud and it shakes and rattles like a washing machine on spin cycle. It's almost unbelieveable that this machine produces such high-quality pictures. I had one set of pics with contrast and one set without.
That was all that was scheduled for us today. The plan was to be back at MDA tomorrow morning to put in a long line catheter. The catheter will be positioned in my arm and will carry the biochemo drugs into my body once we start the treatment. After that we would meet with Dr. Homsi and then start the admissions process.
Well, plans have changed (slightly).
Dr. Homsi called me this afternoon after reviewing my scans and MRI. Yes, my DOCTOR called ME. Not his assistant. Not a nurse. MY doctor. He picked up the phone and called ME. I think you catch my drift here but it means a lot to me that he called. Equally impressive was the fact that just over an hour after my MRI was done, he'd aready reviewed the information and had a plan ready to go. Anyway, Dr. Homsi (and I know you'll read this!), it means a lot to me. You're the man!
Ok, now the changes. Dr. Homsi said that the melanoma has appeared in my brain. We were hoping this wouldn't be the case but that's why the MRI was ordered and now we know. It turns out the brain is a pretty important organ. Although the spot is small, we're pulling out the big guns. We have to get this little guy before preceeding with the chemo.
Tomorrow I'll meet with Dr. Eric Chang. He's just a Havard and MIT grad that zaps unsuspecting tumors with his Gamma Knife. Yeah, no biggie. That's just how we roll! That's just how MD Anderson rolls. We find it, we zap it, we move on.
This "speed bump" will temporarily delay the biochemotherapy treatment. But not for long. Dr. Homsi believes we will be back on track early next week. This means I'll be sucking down chemicals for Thanksgiving, but believe me when I say that I have so very much to be thankful for. I'll gladly trade one holiday dinner for many, many more to come in the future!
Thanks to everyone for all the incredible notes and messages on the guestbook. It's an amazing feeling to know that you're out there and with me.
Love to all!
-Brian
Experience the GAMMA KNIFE here.
11/12/2010 @ 7:01pm
HOME SWEET HOME!
We left Houston yesterday around 6:00pm and got home a little after 10. Some rush hour traffic and an interesting navigation system "glitch" added a bit more time to the trip, but we made it safe and sound. It was great to sleep in my own bed (even if it does feel like someone stabbed me in the forehead and in the buttock). I'm actually feeling much better today and even moving around a little bit. The next 72 hours are all about one word: RECOVERY!
It's a quick turnaround back to MDA on Sunday morning. I'm recouping from the surgery and also preparing for the biochemotherapy that is scheduled to start on Tuesday. I can feel that I will be pushing my body to do a lot. When they say aggressive treatment, they really mean it! But, I'm feeling good and up to the task! You know, this cancer guy really barked up the wrong tree... and now somebody's going to pay!
One last thought before I go. Anyone who knows me likely already knows this. For those who don't know, I am so blessed to have the most amazing woman by my side through all of this. Lupe is an absolute machine these days. I'm not sure how I got so incredibly lucky but she shines the brightest when I need her the most. If you follow my journey for any amount of time you will surely hear me mention her regularly, but words simply cannot describe the tireless love and care she provides. I love you, baby!
Enjoy your Friday night! Thanks, as always, for all the love and support! I love reading the messages!
-Brian
11/10/2010 @ 6:02pm
I am happy to report surgery day was a success. We checked in at 9 am. Got taken back to pre- op around 10:15 and Brian was taken in to surgery around 11 am. Surgery did start a little late, but it ended faster than the estimated time given of 2 hours. Two tumors were taken out for harvest of the TIL. The doctor seemed satisfied with the amount of tissue taken, approx 3 grams of tissue. He stayed in recovery for about 2 hours and he came out of anesthesia and regained his strength. We are back at the hotel resting. He is feeling a little groggy but other wise feels great. No pain, good meds and some soup on the way! As suggested by the doctor we will stay in the area until Friday morning in case of any complications. Brian sends all his love and again thanks everyone for all their love and support.
xoxo Lupe
11/9/2010 @ 2:48pm
Day 2 at MDA in Houston is in the books. We actually made it out of there a little ahead of schedule today, which was nice!
Something occurred to me today while Lupe and I were waiting for one of my appointments. It's something that I've noticed before, but it seemed way more apparent today.
I'm young.
And not just young in general. I'm 32 years old and In cancer terms, I'm a freaking baby. Sure, there is a children's floor at MDA and they are literally babies, but I'm a lot younger than most of the people I see throughout the center. Except for the staff members working there. Oh, and there are plenty of sons and daughters pushing their folks around in wheelchairs. But, I was reminded again today that I am young. And I am healthy and strong and ready to fight like hell!
Today, I went through an assessment to make sure I'm able to receive anesthesia during the surgery tomorrow. No issues with that.
Next came the pulmonary function (lung) testing. This was another first for me. The results were fantastic. My lungs are strong and healthy, in fact above average! I like being above average!
Last stop today was for x-rays of my chest. I'm interested to find out how those look.
Lupe and I are back at the hotel and relaxing. I'll be admitted for the surgical procedure tomorrow at a soon TBD time.
As always, thanks for the love and support!
-Brian
11/8/2010 @ 6:56pm
Well, it's a start...
First order of business today was an Echo Stress Test. This test is to measure the strength and durability of my heart. Interleukin 2 (one of the biochemo drugs on the menu for next week) has a tendency to make the heart speed up while it's being administered. In order to be cleared for the upcoming dosage use of IL-2, my heart has to be able to withstand 160 beats per minute.
The nurse injected me with a shot of Dobutaminethrough an IV in my arm. The drug worked swiftly, raising my heart rate to 166 bpm in less than 10 minutes. There were two other technicians monitoring me with ultrasound and an EKG machine. It was definitely a strange sensation. My heart was thumping hard and fast at almost 3x the normal pace, but I was just laying there and not even breathing heavily. Strange indeed. The heart is great and ready to roll! In fact, the EKG tech summed it up... "Beautiful".
Next was the consult with Dr. Gershenwald. After a quick physical exam we got right down to business. We talked in depth about the TIL trial and how to best "harvest" the cells necessary for this to work. We also discussed the reality of this trial, which is a standard reality for every treatment I'll undergo; there are no guarantee's that it will work.
I will undergo the surgery to remove a tumor in my left butt check (yeah, you read that right!) and at least one of the two tumors on my scalp on Wednesday. I'll be under general anesthesia and will remain here in Houston until at least Thursday afternoon.
Another note from today. I've granted MD Anderson permission to use my blood and any excess tissue removed from my body for analysis and study. This organization is thirsty for knowledge and they simply cannot simulate actual disease for their research. It was a no-brainer for me to allow this.
Tomorrow brings another full day of testing and examination as we gear up for the biochemotherapy. I will update again tomorrow evening.
Feeling great and looking forward to kicking some cancer a$$! I'm so grateful for the love and support! The FIGHT is on!
-Brian
11/7/2010 @ 3:50pm
What a beautiful day here in Austin, TX. Unbelievable weather for this time of year!
Lupe and I will hit the road around 4:00am which should put us in Houston by about 7:00am or so. My first appointment tomorrow is at 8:00am and I'll likely be at MDA until the early afternoon. I'm getting pretty anxious to get there and get things rolling.
I know it might seem a little odd, but I'm actually looking forward to surgery and the biochemotherapy. Obviously, it's not something I'd ever just sign up for and I'm certainly not a gluten for pain, but I really want to kick the crap out of this stuff. I'm tired of wondering if it's growing or continuing to spread. It's taken a lot of time and effort just to get access to these procedures. My patience is running low but I know we're really close now.
Still feeling great, physically. Lupe, Mom, and I are convinced that the tumors on my scalp are shrinking visually. It's tough to say if that's true or not but I'm not in any pain, which (I've been told) is a good thing.
Thanks to all who have left messages on the guestbook. I love readin them and it means so much to me!
-Brian
11/6/2010 @ 12:06pm
First off, thanks to everyone who has signed the Guestbook. The comments and messages are a clear reminder of what I'm fighting for. I'm so humbled by the love and support.
COUNTDOWN TO HOUSTON: We're now just two days away from returning to Houston. Very busy day today and tomorrow but I will continue to update when I can.
-Brian
11/5/2010 @ 3:36pm
Interesting article from AOL Health: The Anti-Skin Cancer Diet
11/5/2010 @ 1:47pm
A few weeks ago I met with an executive of theLIVESTRONG Foundation to discuss some projects they were working on. I have become very intrigued by LIVESTRONG recently as I am learning more and more about who they are and what they do.
Most of us know that LIVESTRONG was created byLance Armstrong, a 7 time Tour De France champ that defied the odds by beating testicular cancer. His cancer had spread to his brain and lungs, and required surgery and extensive chemotherapy to overcome. He's a global advocate and source of inspiration for cancer patients and survivors.
Today, the LIVESTRONG Foundation offers an incredible array of support services for cancer survivors and their families. Everything from prevention to detection to treatments and clinical trial access, physical therapy and rehab, nutrition and dieting, support groups and psychiatry. It's actually really amazing and I think it's one of those things in life that you really don't know how awesome it is until you actually need it. Once you discover it you find yourself compelled to do more.
Anyway, LIVESTRONG has asked to feature me in a documentary that will be used to spread awareness about melanoma and also to offer some comfort and knowledge to others who have been diagnosed. The video is being produced by Alpheus Media. They've interviewed me on camera and have also given me a camera to document my day-to-day life. The concept is to not just talk about it, but to actually show what it's "really" like to go through something of this magnitude.
The fact that I've joined the ranks of such prominent figures as Gene Simmons, Kim Kardashian, and "The Situation" won't go to my head. Don't worry.
Thanks!
-Brian
11/4/2010 @ 12:21pm
Hello everyone! I wanted to start with some news regarding my treatments and an update on where we are.
It's now been almost a month since my official diagnosis of stage 4 melanoma, and nearly 7 months since the first occurrence. I'm in good spirits. I'm feeling strong and healthy, physically. I'm definitely ready to get started with treatments.
I will be starting my fight at MD Anderson Cancer Center in Houston, TX under the care of Dr. Jade Homsi. MDA is widely regarded as the absolute best cancer treatment center in the country. They have many treatment options available and have exclusive access to many cutting-edge clinical trials. The fact is there is no cure for my disease but we are hoping to find treatment that will allow me to live a normal, healthy life.
My next appointment is November 8. I will be meeting with a surgeon to discuss a clinical trial called "TIL". This trial extracts cancer-fighting t-cells from my body, ships them to the lab, multiplies the cells, then pushes them back into my body to overwhelm the melanoma. This treatment is effective for about 50% of those who've tried it. The challenge is actually getting the cells to grow outside of the body. We'll extract the cells on November 10 and then wait 4-6 weeks for them to develop.
In the meantime, I'll undergo my first round of biochemotherapy. This is a combination of three standard chemo drugs and two immunotherapy drugs given simultaneously through a port in my chest. I'll be in the hospital for about 7 days and under close observation. This is considered a very aggressive treatment which sounds good to me! I'm scheduled to begin November 15.
I'll update as we get closer, and will continue the updates throughout the journey. Thanks for the love and support, and welcome to the fight!
-Brian
The new FIGHT LIK3 HELL! T-shirt
Gruene water tower. Tour de Gruene 2011
Finish Line, Tour de Gruene 2011
HowsBrian t-shirt design
Movember is here!
LIVESTRONG Village 2011
Team FLH, LIVESTRONG Austin Challenge 2011
Lupe and Brian, LIVESTRONG Austin Challenge 2011
Finish Line, LIVESTRONG Austin Challenge 2011
Doug and Brian, LIVESTRONG Austin Challenge 2011
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