Week One: The Oozing Begins

I am now into the third month of my clinical trial for poziotinib. After the first two months, I had to take two weeks off for recovery from the rash it gave me. I am, however, glad to be back on the drug for the very simple reason that it was effectively killing the cancer within me. That is not a claim I make lightly, or, sadly, have had reason to make much at all over the past year.

When I was first put on chemotherapy back at the end of 2014, it was because there were no targeted therapies or immunotherapies available, either on the market or through clinical trials, that were likely to work for me. Chemo seemed to be the only option and, in some ways, it felt like a last-ditch effort. My tumor was considered inoperable, the metastasis had spread too far and wide, and radiation was not even being presented as an option.

While I was primed for a limited response and the possibility that I might only get a few months extension from the process, it turned out that chemo kind of worked for me. It worked well enough, in fact, that I would stay on it for over two and a half years — most of that time, simply keeping the cancer growth in stasis. There was talk of the possibility of being on that drug for five or more years at one point, but not long after the two-year mark I began to notice small changes in my scans. Very small, but changes, nonetheless.

I had plenty of time to think about options. And I knew that chemo was never going to be a permanent part of my life. There had been the hope, however, that it would keep things more or less static for a much longer time. I’m not a fan of hope — it always lets you down in the end, sometimes viciously; I far prefer a simple, pragmatic approach to my future. But hope sneaks in, lodges itself where you weren’t looking, and waits to insinuate itself in your private thoughts while you aren’t paying attention. Then you have a scan that clearly shows a shift in the primary tumor, a dramatic enough change in shape that it would be silly to even consider prolonging the current treatment, and all bets are off as talk of new biopsies and possible drugs begin to swirl through the air. No matter how prepared I thought I had been for that moment, I failed to consider hope mucking up the works.

Still, there were options — and they all sounded good. Or at least passable. A liquid biopsy — essentially just a small blood sample sent off to a lab — offered up a newly targetable mutation. And we went for it. A couple of times. And had no real success. Then there was this clinical trial I am currently on, and there was clear improvement in my lungs. By “clear,” I actually mean “clear,” too: previous to this new drug, the cancer in my lungs had been branching out, cloaking the tissue in what almost looked like a black widow’s web. My latest CT scan was the clearest one I have seen since my diagnosis.

So when I say that it was effectively killing the cancer within me, I mean it, and the statement means something to me. Something very special. Something that has made me ready to dive right back into the acid bath that was my first eight week experience, though with the hope that I’ve built up some level of tolerance and that the acid might have been slightly neutralized by knocking a couple of milligrams off my dose.

Here I am on day seven, only one week, and the rash is clearly running the same basic course that it did before. My scalp hurts, albeit probably a little less. I’m glad that I had the foresight to chop off my hair and shave before the rash had a chance to return. Even so, my short little hairs on top of my head are already weirdly wiry and stiff, the texture that contributed to a lot of the pain I had before. Rubbing up against them, they poke right back into my scalp like little needles, which does not bode well for pleasant sleeping regardless of the supposed comfiness promised by my pillow. Still, having much less of that hair to contend with, and almost nothing left of my beard, has already paid off.

Being proactive with the creams and oils and gels and lotions and drops and sprays and whatever else I have amassed on my bathroom shelf is also helping… I think. It is a bit early to tell, but so far I am managing to maintain more of my actual skin color and I do not itch nearly as much as I feared I might. Time will tell, of course, and the rash is marching on.

It only took six days to really begin erupting. Last night I realized that I needed to cover my pillowcase with an old T-shirt again, just in case. And I woke up with spots of blood and pus all over where my scalp had pressed into it. Scabbing had begun in earnest, already crusty when I went in to wash the sleep from my face. And the warm water I splashed cut up against my skin like little razors doused in lemon juice. But it was a quick sensation, over by the time I blotted the moisture away with a clean towel. And that towel then quickly thrown in the next load of laundry.

Today, I am oozing. Tomorrow, I am likely to be dry and scaly, or oozing some more, or, if I am lucky, something in between. My skin is still soft, and I will try to keep it that way. But more than any of that I am simply holding out that old demon, hope, once again, that the scientific miracle I witnessed on those last two scans will be repeated again.

And now, my week in pictures:


 

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