I’m officially a member of the X-Men…Phase I Treatment Begins!

I’m officially a member of the X-Men…Phase I Treatment Begins!

So, before you ask “why didn’t you use a picture of the actual X-Men…or at least a picture of Deadpool?” to help accentuate your title, please realize that I’m playing the odds due to my financial limitations. The chances are greater, despite breaking copyright laws by stealing pictures off Google images like any 14-year-old doing a PowerPoint presentation for every subject in school, that the creator of the Super Pill image is less likely to sue me than Stan Lee and Marvel Comics. In either case, I would hope the image creator would feel honored that I used their creation. And if that didn’t work, I guess I’d put my tail between my legs and ask forgiveness…because after all, *activate sad face and somber voice* “I have cancer”.

It’s amazing how much of an emotional response you get out of people the moment they hear that you have cancer. I’m still relatively new to the ‘cancer club’, but I don’t feel like any more or any less of a human being than I did two months ago prior to diagnosis. And yet, people look at me now with genuine concern…they talk to me with increased sincerity…and they offer to do crazy things like mow my lawn, cook and deliver great meals at dinner time, or walk my dog — simply because I have cancer.  I fully expect those interactions will go back to “normal” once I successfully beat cancer (spoiler alert, it’s going to happen!). I’ll still have a lawn that needs to be mowed…my stomach will still growl when hungry…and my dog will still want to urinate on every bush and shrub on Serenity Lane (sorry, neighbors). But I’ll be able to do those things for myself in my cancer-free body. People will treat me the way they did the first 39 years of my existence…and no one will care what I write in a blog. Enjoy this while it lasts, folks.

But since you’re still reading, let me tell you a story about how there are magical pills that reduce cancer (at least temporarily) for some people. I’ll try to keep this as general as possible, since most people reading this will not necessarily care about the science involved. Generally speaking, cancer cells multiply and grow by damaging the DNA within a cell’s nucleus. There are FDA-approved pills that disrupt the message that leads to a cancer cell’s nucleus, thus keeping the cancer cell from multiplying (growing) and sometimes leading to death of the cancer cell.

In order for these pills to work, the cancer-having participant must have a genetic mutation known as V600E BRAF. Roughly 50% of the population has this mutation…and I am in the lucky half. For theses “mutants” to which I belong, oncologists will generally prescribe two different types of pills for phase I (targeted therapy). The first pill, which disrupts the initial signal of the cancer receptor, is known as vemurafenib (Zelboraf). The second pill, which disrupts the second level of the protein pathway, is known as cobimetinib (Cotellic). Used in combination, these drugs have shown remarkable success in shrinking cancer for most people with the BRAF mutation. Unfortunately, cancer is a Sneaky Snook (can you tell I’ve watched too many episodes of Disney’s Jake and the Neverland Pirates with my daughters?) that eventually mutates around these inhibitors…and the cancer cells continue to grow/multiply. The pills are not a cure — but build a temporary bridge to more effective (and sometimes permanent) treatments known as immunotherapy (see my phase II blog post).

I saved the voicemail that was left for me from my oncologist Dr. Richards, and I listen to it once a week to give me strength: “I just wanted to let you know that the mutation analysis, I have been verbally informed, is positive!” He goes on to explain the next step would be to get Zelboraf and Cotellic in my possession as soon as possible, once insurance approves the final report on my mutation analysis. I’ve saved almost every message I’ve received from Dr. Richards and his team so far, because to date every voicemail message has contained positive news. But this message was the first one I saved and I easily recall why it has the most meaning to me. I remember missing his phone call in the first place because I was sleeping 16 hours a day and I was miserable…back pain, coughing, wheezing, shortness of breath…all symptoms of the cancerous tumors that had invaded my neck, lungs, and spine. I was at my lowest point (both physically and mentally) and I started to believe that cancer would take my life, possibly before I reached my next birthday.

Side note: Anyone that knows me knows how much I enjoy going to the movies. My next birthday, on February 19, 2017 will be my 40th trip around the sun. My wife has already been instructed that for my 40th I want one of those birthday parties where they rent a room in the movie theater and serve pizza/Coke, then go watch a movie. I’m not sure what will be showing eight months from now (probably one of the umpteen Star Wars spin-offs), but I can guarantee I will be smiling ear-to-ear throughout the entire movie…and orange sherBET will be served for dessert. And if anyone thinks that’s a stupid or immature party idea, please remember… *activate sad face and somber voice* “I have cancer”.

Back to the story. So, I receive the call that I’m a mutant on June 13 (11 days after diagnosis) and that’s the first spark of optimism I had since diagnosis. Unfortunately some insurance issues only made the first pill (Zelboraf) available the following day, but Dr. Richards wanted me to start with that until we could get the second pill approved. Now go back and look at the picture of the super pill at the top of the post — that’s what I took. Zelboraf (the SUPER PILL) had been in my system for about five days and I felt like a completely different person. No more coughing and wheezing. No more sleeping away most of my days and nights. I could stand up straight with no back pain. The lymph nodes sticking out of my neck were visibly smaller. I was, in essence, Steve again. We celebrated my wife’s (ahem) 29th birthday (again) that Saturday night (5 days after starting Zelboraf) and I was back to my usual self — smiling, laughing, walking with a spring in my step. Here’s a picture from that night:


We had dinner at our favorite restaurant (Seasons 52 – Schaumburg) and celebrated the progress that had occurred in less than a week. We were excited about the second pill (Cotellic) which I had just started the day before. Things were looking up. Cancer wasn’t that bad. Did I just say that? Jinx.

The next day, I started to noticed a weakness in my feet. Nothing too extraordinary, but it would have impacted my Olympic bid as a world class sprinter. The day after that, the weakness in my feet turned into joint pain. Then the other side effects started to kick in: blurred vision, chills, fevers, night sweats, rash, blemishes (spots) all over my body…all completely normal and somewhat expected when taking toxic medications, according to my oncologist. I was instructed to immediately stop taking the second pill (Cotellic). Three days later when the symptoms had not disappeared yet, I was told to stop taking the first pill (Zelboraf). Evidently the pills that had offered me so much relief initially had pushed my body to the limit…the toxicity was too much…and my body wasn’t happy.

We were originally told that we would be in Phase I for 6-8 weeks before moving on to Phase II. Well, it turns out that Phase I was only going to last 2 weeks. The side effects of the pills — combined with the noticeable positive progress I had thus far — changed the timeline. Phase II was going to start 11 days. I was about to graduate to another cancer treatment…IPI-NIVO (see post on Phase II for more details). And I was, once again, terrified at the potential side effects of my new medication.

My wife and I have numerous discussions about how cancer has given my life a ‘new normal’. I will be on some type of medication (and/or supplements) for the rest of my life…that’s my new normal. There will be days when I feel great and other days when I’m experiencing painful set-backs…that’s my new normal. I will instantaneously make connections with other cancer sufferers/survivors (and their family members) everywhere I go…that’s my new normal. People will look at me and talk to me differently just because I have cancer…that’s my new normal. The truth is, it’s highly unlikely that I’ll ever truly ‘beat’ cancer. I will fight like hell and celebrate victories with family and friends. I will go through periods (hopefully years at a time) where I’m essentially cancer free (my cancer colleagues refer to that as being NED — no evidence of disease). But I will also wake up every morning and take inventory of every bump, bruise, thought, and feeling — wondering if it’s connected to my medication or the re-emergence of cancer cells…that’s my new normal.

On the flip side, every one of my daughters’ giggles has more meaning to me. Those moments when my wife looks into my eyes and tells me how much she loves me, carries more significance. My dog, Bauer, who used to annoy me by following me around the house all the time wanting to play fetch, now has moments of my undivided attention. I’m more aware of my surroundings and more appreciative of the tiny efforts that used to go unnoticed…those are also examples of my new normal.

People always only talk about the negative aspects of cancer. Don’t get me wrong…I’d rather not be diagnosed with Stage IV Metastatic Melanoma, but why not take advantage of my new normal. I’m 25 pounds lighter than I was prior to diagnosis — my clothes fit better and I have a lower BMI. I look forward to holidays and birthdays, even my own, instead of just going through the motions. I’m eating healthier than I ever have in my life…and trust me, my wife has been trying to convert me for years. Speaking of my wife, our marriage is stronger than ever and cancer has rejuvenated our friendship. Those are all ‘new normals’ that cancer has brought to the surface. Let’s celebrate those positives!

My BRAF mutation may not make me X-men eligible, but my hyper-awareness and analysis of life vs. death has made me appreciate life’s little moments much more. The day will come when I’ll have to return to walking my own dog around the block. Delicious meals will stop arriving at my door, randomly. I’ll be expected to do my own yard work. And no one will read this blog.

I’m not sure where the rest of this story is going to go, but I can assure you there will be ups and downs. And I will continue to document them in the hopes that this helps someone suffering through a life-threatening disease…or gain an understanding of what a loved one may be going through in their own battle with cancer. I’m no longer allowed to write this blog for solely my own benefit…that’s my new normal.





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