Not that I’m the least bit worried (actually, I’m the most bit worried), but surviving a terminal cancer diagnosis years beyond one’s original prognosis does present its own unique set of problems. Most notably, and most personally for me, they concern treatment options. Specifically, what drugs, targeted or otherwise, can be infused and/or swallowed (when in pill form, like Tarceva) and for how long, when signs of internal organ damage are indicated on regular lab tests? The answer is, generally speaking, so long as your body – as indicated by lab work and any physical symptoms/diagnostic scans – tolerates it. Once the results turn negative, however, and the drug no longer appears to be working, change – in the form of new medicine – is warranted, according to my oncologist. Cancer cells figure it out eventually, and the drugs become ineffective. Moreover, going back to previous drugs – infused or orally (first line, second line, etc.) – that were likewise once effective and then no longer were, is also rarely advisable since the drugs don’t magically become re-effective with non-use. Apparently, the cancer cells don’t forget, either.
The problem then becomes/has become, for me, given some of the now pre-existing internal organ damage nearly six years of non-stop chemotherapy can cause, is that a patient can run out of treatment options. In fact, I’m on the last oncologist-recommended one, of those with acceptable risks and side effects. Barring any new drug making it out of the research/FDA-approval pipeline, my next option is experimental/a clinical-type study (N.I.H./Johns Hopkins come to mind) or alternatively, a 100-percent non-Western approach. Fortunately, I’m not quite there yet; I was almost there last September after a week-long stay in a hospital due to fluid build-up in my lungs, when after my release, my oncologist took a bit of a chance and prescribed Alimta (an infused chemotherapy drug, the one he characterizes as “the last miracle drug” on the market) for me, which has been miraculous. I’m not cancer-free, but neither am I curled up in a fetal position. Alimta has become my new best friend.
I can’t say I worry about “what next” every minute of every day, but I certainly worry about it most days, and most definitely worry about it every third Thursday while I await the results from my every-three-week, pre-chemotherapy lab work. Once my creatinine and bilirubin (kidney, liver respectively), exceed acceptable levels, my chemotherapy stops (and if my next CT Scan shows tumor growth and/or movement, likewise the chemotherapy stops) and the “what next” question rears its ugly head. Quality of life, quality of treatment. I’ll have entered the land of the unknown. No more FDA-approved protocols, no more drugs whose efficacy can be measured. No more predictability. Life as I’ve come to l know and love it will likely take a turn for the scary.
So far, my body – and my mind, have mostly withstood the chemical and emotional onslaught that almost six years of chemotherapy can exact. I don’t imagine, given my original “13 month to two-year prognosis” back in late February, 2009, that this routine goes on forever. As much as I want to believe and live like I have a future, sometimes it’s difficult not to live day-to-day, or at most, every-three-weeks-to-every-three-weeks.