On Monday, I had an early start at MD Anderson. I had a quick stop at the lab for some blood work and then headed over to the MRI clinic for a brain scan. The TIL protocol requires “stable” brain metastases before beginning the treatment. I’m always concerned about my brain and these MRI’s are a very humbling time for me. I (obviously) can’t see my brain and have been surprised/sucker-punched by brain complications before. Having melanoma spread to the brain creates unique problems, particularly when it comes to treatments. Some agents used to treat the disease, including IL-2, can actually cause swelling in and around tumor tissues. Therefore, doctors will not proceed with certain types of treatment if the patient shows signs of disease in locations where swelling could be a serious problem. Swelling in the brain is a serious problem. Especially, when self-inflicted.

The report from the MRI came quickly. My brain is stable and improving from the last MRI in June. Crowd goes wild and another step forward.

On Tuesday, I went back to the hospital for a follow-up with my Neurologist, Dr. Tremont. He confirmed that the brain showed signs of improvement and there were no new lesions or spots of concern. He was happy to see that my symptoms appear to be improving.

Next stop was the dreaded Echo Stress Test. This one always freaks me out. I’ve written about it before. You remember… you’re laying there very still with stick patches and wires all over your body, an ultrasound machine focused on your heart. You look over as the staff begins to push some mysterious fluid through your IV which causes your heart to start beating faster and faster. They’re cheering you on as your heart rate climbs but you’re just laying there literally doing nothing but trying to act normal while your heart is pounding so hard that you become convinced that you’re going to break a rib. They get you to the desired beats per minute and then it over. Then they tell you to relax. You’ve been laying down, in a pretty comfortable bed, for nearly 40 minutes so you’re pretty comfy (except for the whole heart is going to explode “issue”). A few minutes later, it’s over and done. Back to normal and away you go.

My heart, by the way, is strong and healthy.

The nightcap was over at the Mays Clinic for a full body PET scan. It’s become so routine now. I know the drill. I bring the melanoma, they bring the radioactive sugar. They have the warm blankets, I have the funny jokes. Then it’s time for business as the machine does it’s work. I’m in, I’m out, I’m gone.

Wednesday morning I had a meeting with Dr. Papa. We reviewed the scans together, which showed some areas of progression in my disease. Then he totally blew my mind when he said my liver looked “unremarkable”. C’mon, Doc! You gotta say something!

“Unremarkable”, as it turns out, means there is nothing there to discuss. So, essentially, my Oncologist just told me that there is so active disease in my liver. That’s really good! But please hold your applause until the end.

So, the fact that my brain is stable and my body is functioning well means we proceed.

I met with the TIL research nurse, Deborah, and we went through the entire protocol together. She explained to me that I would be randomized into one of two cohorts of the trial. There’s really only one difference between the two different arms: one includes the infusion of dendritic cells (along with the super t-cells and IL-2) and the other doesn’t. Dendritic cells are pretty fascinating little guys. It’s a relatively new area of research, but so is the rest of this treatment. Ultimately, I was selected to receive the treatment including dendritic cells. We believe this to be a good thing.

So now we wait. But not for long. I’ll be back in Houston tomorrow for a few more appointments and tests. We are making progress and I will continue to update as things unfold. If I had to guess, I’d say we are looking at September 10th as a possible start date, meaning admission to the hospital and anchors away.

I can tell you right now… the melanoma isn’t ready for what’s about to transpire. This treatment will be tough on me and on my body, but it’s going to devastate the cancer. We will no longer be playing nice. No mercy.

Can’t thank you all enough for your continued love and support. It means the world to Lupe and I!

Be well.

Brian

In light of the recent developments surrounding Lance Armstrong and the US Anti-Doping Agency, I’ve decided to come clean about a few things. I know that some of you who read this will likely be stunned and shocked because I have always spoken so highly of Lance and his foundation. But, the fact of the matter is that the truth must be told.

When I was diagnosed with stage 4 melanoma at age 32, I was completely freaked out. My family was freaked out. There is no cure for the disease and it seemed like all we could find was bad news regarding survival rates and the effectiveness of available treatments. It was obviously a rough time for us. You would think that a situation like mine would be custom made for the support and services that LIVESTRONG allegedly provides.

Yeah, well, not so much.

Prior to beginning any harsh treatments, my girlfriend (now wife) wouldn’t stop nagging me about looking into fertility preservation. She was so concerned about wether or not we would be able to conceive a child after undergoing chemotherapy. We eventually found a lab in Austin that specialized in cryogenics. When we called to make an appointment, we were told that the cost of the service would be close to $2,000 because I had no health insurance. When we asked about possible payment/installment plans, etc., someone at their office recommended we call LIVESTRONG and ask about their SHARING HOPE Program.

We contacted the Foundation and had to fill out this enormous, one page application that consisted of three very tough questions: My name. My date of birth. My annual household income. Then I had to sign it! With a pen! Oh, and then I had to put the form into a fax machine and send it to LIVESTRONG! I can’t believe that they made me wait for nearly 2 whole hours before someone got back to me! And all they had to say was that I’d qualified for their program but the best they could do was assist us financially, knocking the cost of the fertility preservation from $2,000 to around $250, which would include a year of free storage.

REALLY? Saving me $1,750 and preserving a chance to have kids some day? You call that help?

Next LIVESTRONG’s Cancer Navigation Center demanded that they get involved in helping me find insurance that would allow me access to necessary, life-saving treatments. When we found the coverage, I was left with no other option but to go to MD Anderson Cancer Center in Houston. What, I’m supposed to be impressed because it’s the #1 ranked Cancer Treatment Center in the country? Whatever.

Oh and by the way, how dare they provide me with a voice and a platform to share my story to help educate, encourage, and inspire others who may find themselves in situations similar to mine!

Let’s see… where was I? Oh, now I remember…

When I was selected to participate in a clinical trial that required me to travel to from Austin to Los Angeles every 28 days, their so-called “Foundation” connected me with a program that paid for my flights. Oh, yeah, BIG DEAL! What if I liked the idea of spending nearly $400 (more than my monthly car payment) every 28 days on plane tickets when I had no income because I couldn’t work? Did any of their “advocates” ever consider that? I doubt it.

Next was the bike ride. They basically forced me to get on a bicycle, alongside thousands of others, and ride an insane number of miles while raising money to support those affected by cancer. Do you have any idea how sore my legs were after that? Were they trying to bring my family and I together and unite and inspire tons of people? What good is that going to do? And convincing other people to run and walk? Let me guess, Lance. You must think exercise is a good thing? Geez. WAKE UP! Give me back my BigMac and my couch!

It’s so liberating to finally get all of this off of my chest!

When my short-term health insurance plan expired and I had been denied coverage by numerous providers, LIVESTRONG probably thought I’d be real impressed when they showed up with a new program that would cover me even though I had a serious, pre-existing condition. What, so they just assumed that I would need health insurance to fight a disease that’s trying to kill me everyday? Come on. Get real.

Oh, and when that same insurance plan decided to deny me coverage of an exciting new clinical trial that has the potential to allow me and my family to walk away from cancer forever, would the people at LIVESTRONG just decide to jump in and assist me once again?

Of course they did. How convenient.

And now, low and behold, the insurance provider decided to reconsider their denial and I’ll be starting this new clinical trial in a couple of weeks with all expenses covered. Let me guess, I’m supposed to be excited about that too? Like beating cancer and living a normal life is just soooo cool and awesome? What’s next? Are you going to tell me that my wife now has hope that we may be able to have a family some day and enjoy a long life together?

I don’t know who’s in charge over there but maybe this note will catch someone’s attention. And maybe, just maybe, LIVESTRONG will stop screwing people like me and, instead, focus on ways to actually help us (as they claim they do).

ENOUGH IS ENOUGH!

Sincerely,

Brian Rose

The feedback and support was incredible to witness. The video was launched on my website and links were suddenly flying around cyberspace. LIVESTRONG launched the video, along with a blog entry (http://blog.livestrong.org/2012/08/10/cover-the-trial/) that reportedly instantly reached over 6 million people. In the first three days, we had raised close to $5,000.

A local businessman here in Austin, Milton Verret, discovered the video and decided to get involved… in a HUGE way! On Tuesday evening I was on a call with Milton, as well as others, discussing my needs and his desire to help. He committed $35,000 out of his own pockets and wanted to get the media involved to issue a “community challenge” to match his contribution. Ultimately, this generous man (whom I had never met), assured me that the entire $70,000 would be raised, even if it met him donating it all himself.

We scheduled a meeting the following day to discuss details. I was literally pulling into the parking lot at Milton’s office when my phone rang. I almost didn’t answer it because I didn’t recognize the number. However, I did answer the call. It was Brendan Bietry, a patient navigator at LIVESTRONG. Brendan informed me that he had just received a call from the Office of Personnel Management in Washington, DC. He went on to say that the review panel had just reached a decision regarding my appeals and that they had overturned their initial decision to deny coverage of the clinical trial. They were now “on board” and approved me for the treatment.

Huh???

So…. I parked my car.

I was so completely overwhelmed. Twenty-four hours ago I had about $5,000 and a video. Now I had an incredibly awesome guy ready to write a big check AND an insurance company ready to do the right thing and cover the trial. (Note to self: If things aren’t going the way you’d like, just give it a day.) The truth is, what these two developments really meant was hope. It occurred to me that, although I didn’t have a perfect plan, I had never lost my beloved hope. Hope that somehow I could raise the money standing between me and the treatment. Hope that the insurance company would wake up and do the right thing. Hope that I wouldn’t have to resort to setting fires, breaking car windows, or any other form of “persuasion” that I might have thought of to convince them to help me.

I’ve written in the past about the power of love and hope, and what those two things mean to me and my battle with cancer. I believe that those two possessions hold the key to overcoming even the most impossible odds. They fuel our fire to fight. They also help us determine what is worth fighting for.

I am so excited to announce that I will be heading to Houston on Monday to get things started on the clinical trial. The team at MD Anderson is anxiously awaiting my arrival and are already making arrangements for necessary tests, etc. to fast-track the process of starting the treatment. This is not going to be easy but I am prepared. My mind is right. My body is…. well…. it is. But, I’m ready. I’m ready to beat the shit out of some melanoma! I’m ready to unleash an army of billions of super t-cells that are fired up, pissed off, and know that somebody has to pay!

Thank you to everyone that saw the video and took action, whether it was donating, sharing the video, or simply taking the time to send me an encouraging note. I appreciate your help!

Thank you to Alpheus Media for helping me with the video! You guys are so bitchin’!

Thank you to Mr. Milton Verret! I am so grateful for your kindness, compassion, and generosity. Ultimately, I’m happy we didn’t have to go through with your pledge, but thank you for providing my family and I with peace of mind and hope. It was such an honor to share my story with your staff and to get to shake some of their hands!

Thanks to Solvenia at MD Anderson!

Thank you Brian Howe and Sara Siegler!

And thank you to LIVESTRONG for jumping into the ring, right next to me, once again!

Ok, I know this isn’t the freaking Oscars.

I will be updating regularly with news and info on the trial, etc. as things get rolling.

Love to all,

Brian

If you have seen the new video on the homepage of this site, you know that the battle is on. This is a detailed description of where things stand as of this evening…

My doctors have approved me to participate in the TIL/ACT Protocol being offered at MD Anderson Cancer Center. This treatment is a phase II research trial that has shown some incredible potential for patients with advanced melanoma. It is a tough treatment that will require an extended stay, with observation, in the hospital.

In April 2012, MD Anderson submitted a formal request to my insurance provider for coverage of services necessary for my participation in the trial. My insurance company denied the coverage.

Shortly thereafter, MD Anderson submitted an appeal of the decision, along with a complete description of the protocol and explanation of all services involved.

The insurance company responded and agreed to cover a portion of the protocol, but denied coverage of nearly $70,000 in services.

MD Anderson again submitted an appeal, this time a little higher up the flag pole, along with letters outlining the continued progression of my disease. Initially, we were told that the decision would take roughly 30 days. This week, we received word that the decision may not be made until early September.

There have been many recent changes to our healthcare system in the US. One new law that was passed requires healthcare providers to cover certain, reasonable expenses associated with clinical trials. According to the legislation, “reasonable” expenses are basically anything that would ordinarily be covered by the insurance plan. They would not be required, however, to cover things like experimental drugs or unusual procedures, etc.

There is nothing unusual about the portion of the trial that my insurance is unwilling to cover. The only potentially questionable expense is the use of two powerful chemotherapy drugs designed to wipe out my immune system. These drugs are not ordinarily used to treat melanoma. But we are not using the drugs to try and kill melanoma. They’re just a part of the process. And the two drugs do not cost anywhere near $70k.

So, here we are. Three hours away from the finest cancer treatment center in the country, a promising, state-of-the-art treatment that could destroy this ugly disease, but handcuffed by an appeal process that is fine-printing me to death. Meanwhile, the melanoma is on the offensive, once again.

I don’t even know how realistic it is to think that I can raise $70,000. But you better believe I’m going to try. And I’m not about to give up or give in. Ever.

If you can help with a contribution, please do so by clicking the DONATE button at the top of the page. You can also purchase a HowsBrian t-shirt or bracelet from the Online Store.

Please share the video on Facebook or Twitter, or simply share a link to this site with anyone and everyone. I will continue to devote all of my energy and focus on finding a way to access this care, hoping they will change their minds and do the right thing but preparing for them to deny me once more.

Thank you for your support!

Peace and love to all,

Brian

Lupe and Brian - April 22, 2012 (Hazeled Photography)

One of my favorite things about baseball (and sports, in general) has got to be rivalries. Yankees vs. Red Sox, Lakers vs. Celtics, Dodgers vs. Giants. There’s just something extra in play when you’re talking about your rival. It’s more than wins and losses. There’s so much more at stake. It’s pride. It’s power. And it’s personal.

Believe me when I tell you that the athletes get it too. Try as they might to convince us that it’s “just another game”, when USC straps up to face UCLA, they can feel the difference. If anyone says otherwise, they’re lying.

There are times when we find reasons to push further and fight harder. Sometimes the reasons are clear and easy to understand. Sometimes maybe not.

I’m back home in Austin now with Lupe and my family. I’ve taken a leave of absence from the Wingnuts in order to commit my full attention and focus to my health and treatment. The team has just began it’s annual NBC road trip, which involves a grueling 16 straight days on the road. This year the trip covers over 4,000 miles of travel beginning in Laredo, TX and ending in Winnipeg, Manitoba before returning to Wichita. With the support of the team, I’ve decided that this time would be better spent concentrating on my personal battle. This is not a white flag. This is more like pre-problem solving. I’m not exactly a sit back and wait kind of guy. So, here we go.

Enter the TIL.

I’ve referred to it as TIL for almost 2 years now but “TIL” actually stands for tumor infiltrating lymphocytes, which is just a component of the therapy. The more accurate name for the procedure/ clinical trial is ACT or adoptive cell therapy. I am going to give my best explanation on how this works but ultimately I have much to learn and understand when it comes down to exactly what happens and why/how it happens.

First off, it is a clinical trial. The treatment has not been evaluated or endorsed for use by the FDA. It’s definitely experimental and hard data is not easy to find. With that being said, I have been told by trial coordinators and doctors that response rates to the treatment are near and above 50%. On planet Melanoma, that’s beyond amazing. In addition, indications are showing durable response and there are signs of effectiveness in brain metastasis. English: It has potential to work well, for a long time, even against brain tumors. Check, check, and check! I have done plenty of my own research on this treatment and feel confident that this is the right path.

As some of you probably know, I’ve technically already started the protocol for this trial. We tried several times to harvest and replicate my t-cells in the lab. After a couple of failed attempts our luck changed after harvesting cells from my parotid gland in February. The cells responded in the lab and I now have an army of trained super cells that are chilling out (literally frozen) just waiting for an opportunity to be unleashed on the cancer’s unsuspecting ass.

Now that I’ve got the cells, the next step is admission to the hospital for the treatment. Step one is to make room in my body for the super t-cells. That means wiping out cells that are currently in my body, good, bad, and indifferent. The more we take out, the more we can put in. This part is not easy. We call this process lymphodepletion. Basically, I will be in the hospital purposely allowing my body to be absolutely destroyed by chemotherapy drugs until everyone feels like I’ve had enough.

Next, we begin to put Humpty Dumpty back together again. The super t-cells were taken directly from the tumors aka “battlefield”. The fact that they were there means they already know that melanoma is not supposed to be there. If you had the choice to clone a police officer, I would definitely have the guy that we found at the crime scene, fighting crime, as opposed to the guy at the station that had no idea a crime was being committed. So, when we begin to pump these hero cells back into my body, theoretically, they should be pre-programmed to have only one purpose in life; find and destroy melanoma. The fact that we are pumping in millions of these cells suddenly levels the playing field a bit, making it a fair(er) fight. The cells are infused along with the immune-activating drug IL-2.

I will be monitored closely throughout this process. It takes time and I will likely be hospitalized for a least a couple of weeks, depending on how my body responds. It’s an intimidating procedure and not without significant risks. However, I cannot ignore the potential of the treatment which includes a chance to walk away from this disease forever. I mean, people might think I’m messing around here but I am literally expecting to BEAT CANCER. Treating it is fine and dandy and I do appreciate the gift that each day brings and the scientific breakthroughs, progress, etc. But, I’m not just content with letting this scum-sucking bastard just hang out and crash on my couch. This punk is going to pay! Maybe not today or tomorrow or next month, but if it wants to let me keep hanging around, I’m going to land a haymaker and knock this dude out cold. HAHA! What a day that will be!

There are some obstacles remaining before I can get rolling on this. I’m working on some things with my insurance and MD Anderson. Nothing is easy. And this kind of treatment is not cheap. I suppose I don’t want cheap. I would prefer right and effective. I’m going to be working hard to continue to make strides towards access to this trial. I will be writing again soon to update my progress. I’m up to the task and am not afraid of the challenges.

Thank you for the love and support!

-Brian

Working the magic - July, 2012 (Jancy Murphy Photography)

I can sit here staring at a blank screen, or I can just start typing. I suppose we’ll all be better off with something we can actually read, so away we go…

There is so much to update. I guess that’s expected when I allow 4 months to pass without reporting anything new.

For those who may be completely out of the loop, I’m currently in Wichita coaching. I’ve been here (for the most part) since 2 days after Lupe and I returned from our honeymoon in early May. My team (Wichita Wingnuts) just played our 59th game of the season last night. Baseball, as it typically does, has all but consumed my life and attention leaving many of my family and friends likely feeling abandoned.

It has been a relatively uneventful few months, sort of. Sometimes it’s a challenge to define “normal” or “typical”. The life of a minor league baseball coach is hardly normal. It’s a grind and it doesn’t stop or slow down. It’s a constant flow of bus travel, hotel rooms, and a relentless game schedule dragging me mercilessly through places like El Paso and Laredo, TX up to Winnipeg, Manitoba with plenty of other stops along the way. It is all orchestrated somehow, someway, and for those of us who have been brainwashed into thinking this life is a good idea, we have all been abducted and are now hostages.

The truth is, this season has had some unique circumstances. First off, Lupe and I are apart. She has been in Austin working and taking some summer courses at our local community college. Evidently, we actually really like each other and genuinely enjoy each others company so not being together just sucks. However, it was our decision and life is never without lessons so add this one to the list. We’ve managed a couple of quick visits which has helped. Let’s just say that we won’t be fooled again.

Meanwhile, in Melanoma Land…

I will be writing a separate update in the next day or two attempting to make sense of where we are health-wise. That’s not a red flag warning by any means, I just feel like I want to take my time and elaborate. Things have been reasonably stable and steady, but not without some excitement. I’ve had a couple of hurdles, but it’s what we do when we fight this fight. I also have some exciting things on the horizon as far as treatment, and other announcements that I can’t wait to share.

All in all, things are good. I appreciate the love and support, as always, from so many of you out there. I promise to get on here more often to share. I hope you like the new look and feel of the website. Special thanks to my friend, Brian Howe, for making my blogging life so much easier and manageable. You’re the man, B!

FIGHTLIK3HELL!

- Brian

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

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

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

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