The End of the Beginning
Last updated: September 2019
The date of my final PET scan after chemo is rapidly approaching, and if all goes as planned, it means the official beginning of my five-year waiting period. I will no longer technically have cancer but will move into that post-active-cancer five-year limbo where the Sword of Damocles is hanging over your head every day.
The end of chemo is something to celebrate, I don’t think anyone would debate that. It not only means that the treatment worked, but it also means that the horrible side effects and sickness from chemo is done. I think the person who invented the phrase “cure is worse than the disease” probably underwent chemotherapy. Granted, it is much better now than it was ten years ago but it’s still not a day at the amusement park, by any means. Unless you hate amusement parks and vomit at the thought – then it’s exactly that. All things considered, though, ending treatment because it worked is a good thing. Unfortunately, it is tainted by the two-year and five-year “cure” standard of care.
Remission, cure, and survivorship
For those who don’t know, my oncologists told me that if you pass the two-year mark without the cancer returning, then you can begin to talk about “remission,” and if you hit the five-year mark without any sign of activity, then you can start to say that other c-word, “cured.” Now, taken in comparison to the sum total of a life, two years and even five years may seem like the blink of an eye, but when you’re living those years post-cancer, it feels like an eternity.
So, what is it like to live each and every day with a potential killer stalking you? Well, unless you are a mob informant who is on the run from his former employers, you probably haven’t experienced anything like it. Try to think back to your high school and college days, and think about one of those horrible standardized tests you had to take. Maybe it was the SATs, or the medical MCATs, or the law school LSAT, or even a certification test for your career- it doesn’t matter. Now, try to recall the time between when you actually took the test and when you got the results, and conjure up the emotions you felt on a daily basis. Waiting to hear if you passed or failed, checking the Internet (or the mail for us older folk) every day with baited breath. I mean, it was only the whole rest of your life that was hanging in the balance, no big deal. Well, living in those post-cancer five years is a lot like that, except if you fail you don’t get to take it again, you just get another chance at dying. Sounds like a lot of pressure, right? Double it.
Entering an amazing and scary phase of life
Here I am, now, about to enter that amazing, scary, wonderful and horrible phase of my life. Five years form now I could be the biggest movie producer in Hollywood, or living in my mom’s basement, so much can change in five years. I might have children by then! It’s going to be difficult not to think about the worst when I get a twinge of pain in my abdomen, or a blood test is slightly off, or I feel nauseous. I already have to deal with the multitude of symptoms and fears I have from thirty plus years of autoimmune illness, and now this on top. It’s a stress factory – and the ironic part is that stress is one of the number one factors in triggering almost all health conditions – heart attacks, strokes, eye issues, RA flares, and, yes, some say even cancer relapses. That means you literally can worry yourself to death. What a ridiculous burden to carry. I thought this part would be easy!
Learning to live with the fear of relapse
Ok, so maybe it’s not as bad as all that, but it isn’t stress-free, that’s all I’m saying. Fortunately, there are some things to help lessen the day-to-day grind. First and foremost, I’ve learned that humans can adapt to anything. If you’ll excuse the crossover episode, I will discuss my RA for a minute. Thirty years of autoimmune illness in the form of rheumatoid arthritis and all the accompanying complications have taught me one thing – I can get up and live some sort of life even in the face of the most horrible symptoms. Human bodies adapt to pain and discomfort and after a while our amazing brain rewires itself to work around the obstacle. Sure, the pain doesn’t actually disappear, but your mind sort of learns how to “forget” about it. I expect the exact same thing will happen with the fear of cancer returning – my brain will simply find a way to live life around it, and “forget” it unless it’s unavoidably thrust into the front of my mind. (Like inexplicably crying now any time I watch a medical drama on night time TV – ugh.) We are amazing creatures, us homo sapiens, and I’m counting on my body to once again adapt.
Preparing myself if cancer returns
In addition to adaptation, I also tell myself that if I made it through once, I can make it through again. If the worst happens and cancer returns, I’ll beat it again. Why? Because the only other option is to be dead. Not much a choice in my book, I’d rather be alive fighting cancer than being dead and doing almost anything. Except yard work – I might actually prefer dead. So many bugs… big, big, bugs… with clackers…. Anyway, I know I’m going to fight it again and win again. Keeping a positive mindset can help us overcome just about anything, and might even help prevent the cancer from coming back (less stress). So, I’m prepared if the symptoms do return and I promise myself not to freak out about every phantom pain and twinge of discomfort. It will be difficult but I’ll do it, I have to do it.
The rebuilding phase
As Winston Churchill said, “Now this is not the end. It is not even the beginning of the end. but it is, perhaps, the end of the beginning.” Although Winston was talking about Britain’s early losses in World War II, it is entirely appropriate for my situation. Cancer is a war, after all, a war against our own bodies, and we all do suffer early defeats. In the end, though, a good majority of us win the war, even if we take significant losses in the process. The rebuilding phase is just as difficult, though, as we rebuild lives, careers, relationships, and, well, ourselves. Talk soon.
How do you feel about your support system?