Today marks one year since I finished chemotherapy and, despite knowing that I was not cured, ringing the anti-cancer bell to much unwanted hoopla and fanfare. Never have I felt less happy at an allegedly celebratory moment than that one. For those who have not had the misfortune of this experience, you can perhaps liken it to celebrating most any birthday starting with your 40th: Sure, you made it – and there is cake – but it is also a sobering reminder of the passage of time and its inevitable conclusion. Except that when it’s the chemo bell, there is no cake, and even if there were you would be too nauseous to eat it.
Since I have taken a full trip around the sun since I completed chemo, however, I thought I would do a sort of Year in Review. This also happens to nicely coincide with my spiritual new year – Rosh Hashanah – although I am unclear whether I should be marking the passage of cancer time on a solar or lunar calendar. I guess whichever will give me the most time until the cancer’s return would be my preference, but I realize one does not get a choice in these things. Cancer, in my experience, is not subject to the rules of time and science that pertain to the rest of the universe. Cancer has its own calendar.
Regardless of marking it as late September or late Elul, the start of my first year post-chemo got off to an inauspicious start. Despite having a very good white cell count that seemed stable (if not in fact now too low) for the first time in over half a decade, my substitute oncologist – my beloved doctor was away at a conference due to a scheduling snafu (read: screw up) by a well-intentioned but not overly careful administrator – informed me that we would not know for another two years how effective the chemo had been. Or not been. And while I will readily admit that I know oddly little about my cancer, I am pretty confident if someone had mentioned that little detail to me – that I might have to go through all of this, but worse, again in the not-distant-enough future – I would have probably retained it. Furthermore, and because of this fact, I would not get to merely make an occasional courtesy call at the oncologist’s office where I did little more than exchange pleasantries and acted as the poster child for successful chemotherapy. Rather, I would be stuck on a quarterly schedule of anxiety-producing visits and phlebotomist probings for the foreseeable future. In short, some of the most disturbing aspects of having cancer had not changed. I was crushed. And angry. Very angry. And with everyone: Doctors, friends, family, other drivers on the trip home. I cast a wide net.
Perhaps somehow due to this, a new and troubling development manifested itself shortly after this involuntary reenlistment for another tour as oncology patient. I began to wake up nearly every morning full of uncontainable and immeasurable anxiety. About everything. Particularly disturbing was that I would later realize most of these heart-accelerating thoughts racing through my mind were largely irrational and often completely fantastical. Even more troubling was that despite knowing this I would be unable to prevent my mind from going down the exact same path repeatedly. The number of mornings that I was convinced there was a mechanical failure of a vital home heating, cooling or plumbing system only to realize that the rhythmic anomaly was simply the dog’s breathing on the bed beside me is too great for me to count. And I am good at math. (I only got a four on the calculus AP test, but that’s all I needed! On a complete non-sequitur, I would like to take this opportunity to tell anyone contemplating being a lawyer or advising someone thinking about same, there is zero truth to the notion that you do not have to be good at math if you want to be a lawyer. Math is everywhere. Except, again, maybe cancer.)
After many weeks of this overwhelming anxiety, I decided to call my oncologist. (The good one.) I realize that to many, it may seem odd to wait this long to call the doctor. Yet one should, I believe, bear in mind a couple of notions that are largely cancer-specific. First, as much as I love my doctor, I really do not want to deal with any oncologist if I can ever avoid doing so. There is an implied heightening of concern whenever one has a health issue and resolves to call in the professionals. But with cancer, it is exponentially more troubling. Related to that is the second reason: It is almost impossible for those who have been living with cancer – even if “cured” or in remission for many years – to distinguish between what is an unimportant ache or pain – perhaps just a sign of growing older – and that which is something about which there should be grave and urgent concern. Couple that with a social stigma against any mental health issue (e.g., anxiety), and it becomes clearer why there is a reluctance to call. When I finally did speak to her, my doctor was completely unsurprised. (She has known me for years as an anxious patient; why should now be any different?) She explained that it is quite common for those who have undergone chemo and endured cancer to suffer from a type of survivor’s guilt.
Although this did theoretically make sense, it did not ring completely true to me. I am probably just selfish, but I do not generally feel too guilty about not being dead. After all, it’s taken a lot to keep me alive, and if anything, chemo just reinforced that idea. So, not fully satisfied and definitely not feeling any less anxious, I took it up a notch and called the psychiatrist. She too was unsurprised, largely for the same reason: No one knows better than her that I am a Nervous Neurman. But her explanation was slightly different as she described it more as a PTSD type of affair. That did seem closer to the mark, but unfortunately she had no quick fixes either. The passage of time – and a 30-day supply of Klonopin – would have to do. She also encouraged me to try meditating but the app she recommended was not free. The $4.95 commitment seemed disproportionate to the likelihood of me actually using it.
Contemporaneous with this period, I also decided to join a few social media groups for people with cancer, including one more exclusive group for those with my type of cancer and a really exclusive group for those of us with this type of cancer under 50. This was, put simply, a huge mistake. Conceptually, it made all of the sense in the world. Practically, however, it was highly counter-productive. There was so much incomplete, or often totally erroneous, advice that I found it both infuriating and depressing. Exacerbating the problems were those who advocated for unproven cures to which they would personally attest without seeming to realize that their experiences were, at best, completely anecdotal. And, by the way, they also were not doctors because, I believe, one does not earn an M.D. by doing a lot of Google searches. I will confirm this understanding later with Melissa since she is in fact a doctor and thus has a better handle on the current licensing requirements.
Not all has been negative, so far, however. Although the Klonopin and a regular nap have assisted me in making it through most days, perhaps the greatest source of relief from all that has troubled me in this first year is being able to articulate these thoughts, frustrations and anxieties through writing about them. While I had hoped that I would not have much more to say about cancer at this point, this blog would suggest otherwise. And to further prove that point, I will add to it in Part 2 of this Year in Review next time.