It has been a whirlwind week; Blue Cross FL has to be shaking their heads as they see authorization after authorization come in. First, a dermatologist visit last Wednesday, which I found almost comical. It had nothing to do with the doctor, though – the irony of getting checked for potentially cancerous skin legions two days before they are going to scan my entire upper body for anything cancerous was just too much for my smart-aleck sense of humor.
Upon taking off a mole (and found the biopsy negative), my response: “Hey, well at least I don’t have melanoma… right THERE!!”
Talking to the doctor about any new spots: “Well, the good thing is that the surgical scars seem to be pretty clear, so I have actually gotten LESS spots in the last half-year…”
And my personal favorite, when casually talking about playing in a charity golf tournament: “I was tempted to play in a tank top and tighty-whiteys; it’s not like I could GET melanoma, right – I already HAVE melanoma!”
My dermatologist, who is excellent and didn’t miss anything (the current melanoma is the same as from my first encounter when I was 25 – it was always inside me, so no amount of sunscreen would have helped), appreciated my attempts to diffuse a difficult exam and conversation. He was adamant that continued skin care was important and that hopefully I would live long enough where this would be something I needed to carefully monitor.
I am adamant too – not only am I expecting to see that day, I am going to do what I can to make sure you shirtless guys burning on the beach Memorial Day weekend or girls tanning before Prom/weddings/etc… realize that having a nice tan is great and all, but is it worth risking your life for?
To hammer that point home, I recently saw a link to a memorial page for a young mother who passed away from melanoma at 33, leaving three small children and a husband. The pictures of her in the days just before her death were in startling contrast to the ones from her wedding, with her kids, etc… looking vibrant and pretty. Melanoma can make you look much worse than any tan can improve your beauty, with the added side effect of potentially killing you. It makes “Gym-Tan-Laundry” sound even dumber than it already did, if that were even possible.
Then, it was over to the ENT doctor on Thursday, before we headed to Moffitt that afternoon. And sometimes, you find the right guidance in the oddest of places.
Doc: (measuring my neck lymph nodes bumps) “These are quite possibly cancerous.”
Me: “Oh, yea, the scans in March said they were definitely tumors.”
Doc: “Well, I pretty much knew that, but didn’t want to get your hopes down before the scans.”
Me: “Doc, we are waaaaay past the rose-colored glasses point – just tell me straight up.”
So he did; in an elder-statesman type way, the kind of advice you imagine to have gotten from Moonlight Graham after he became a doctor in “Field of Dreams.” Dr. Krieger (a Germantown native, incidentally, bumping his credibility up a notch) put down his exam tools and talked candidly with me about my disease and how to approach deciding what to do next. The premise of his words – “be frank and be direct” – certainly helped jolt me out of the intimidating world of medical-speak, and are probably words that most patients should hear their doctor say.
It’s very easy to be intimidated by the sheer volume of information out there, much less trying to understand and sort through it to make educated, life-altering decisions. Remember, the doctor is the “expert consultant” and not the “boss”; the patient is the ultimate decision-maker (with a few emergency exceptions) and should view themselves as president and CEO of this operation. Most often, the guidance and suggestion of our doctors is what should be followed, but that isn’t an iron-clad rule.
With this in mind, we set off for Moffitt and my final checkup and scans. The initial view of the scans showed that the cancer had “slowly progressed” (we are still waiting for the final report from the radiologists). While slowly was good, progressed in onco-speak means “it’s getting worse.” So even though there was slight hope for regression (i.e. getting better), I kind of knew going in that wasn’t going to happen. The legions in my neck lymph nodes give me something I can feel every day, and they haven’t gotten smaller at all.
In our meeting with Dr. Weber, he put it very frankly – we had a difficult decision to make. At this point it was between two separate PD-1 antibody trials; one was at Moffitt and offered all the benefits of a world-class cancer center, the other was at a small facility at Holy Cross that doesn’t offer nearly the comprehensive level of care. The trials were nearly identical save for one detail – at Holy Cross, if I am randomized into the chemo group (which is ridiculous that there is even one, but I’ll save that rant for another day) then at 12 weeks, I may be able to cross over into the group getting the PD-1 antibody. The Moffitt trial does not offer the same crossover provision, so I would either be stuck with chemo or have to wait until another trial or treatment option became available.
I am very much against chemo and think “therapy” in its name has the same connotation as the therapy that comes with electroshock. It is a poisonous, terrible way to treat cancer, albeit one that makes hospitals and pharmaceutical companies a LOT of money, even if most doctors agree that it offers dismal results. I don’t believe in it, I don’t want it in my body, and if I am put in the control group, I will move on to Plan C as quickly as I possibly can. If I absolutely must have it for a designated time period before being able to cross over, then I will get through it as best I can and hope the indiscriminate killing of healthy and cancer cells doesn’t have long-term adverse effects on my body. For someone trying to detoxify their body, there couldn’t be a worse “treatment.” But I digress…
So between the crossover and the location, we decided that Holy Cross and their Merck PD-1 trial was the better option for our family. Paperwork will be finalized in the next few days, and the trial will start, hopefully, by the end of the week. I will know mid-week if my 2/3 chance of getting the PD-1 antibody has hit – it’s like betting on the 1-12 and 13-24 thirds on a roulette table. Gambling with your health, your future, and your life isn’t like taking a couple hundred bucks down to AC for the weekend and hoping to change that into a stack of black chips. This is a calculated, educated next-best option selection, and while there are likely other treatment options still available, the general consensus (and the opinion of our “expert consultant”) is that a PD-1 Antibody trial gives the best shot at a durable, long-term response. Now, we just need a little luck from the randomizer and some cooperation from my immune system, and Plan B will be in effect. Spin that wheel and let’s get this thing moving.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »