No One Told Me This Would Happen

by Jeffrey NeurmanAugust 29, 2019View more posts from Jeffrey Neurman

I usually try to own up to my mistakes – when one has made as many as I have it actually gets a little easier to do so.  That being said, I will take very little, if any, responsibility for the lack of foresight that I had when it came to matters post-chemotherapy for “treatment” of my leukemia.  I will admit that I am a very poorly informed cancer survivor/endurer/patient as I fully trust my doctor.  I never (usually) Google anything or ask too many questions beyond the casual ones such as, “Is this going to kill me?”

Nevertheless, despite my desire to be happily under-informed, before I could begin chemotherapy I had to endure a lengthy “education” session about the treatment to which I was about to subject myself for the succeeding six months.  This session consisted of me sitting in a tiny room in my oncologist’s office with pastel-painted walls that tries unsuccessfully to distract the patient from the reason she or he is there.

Along with me in this mis-colored room was my oncologist’s PA, a very friendly person who was rather cheerful, so perhaps the pastels worked on her.  We sat together for what seemed a lifetime.  During the course of this session on my upcoming infusions of toxic cell-killing fluids, the PA went over an unending list of potential side effects and other important information that there was absolutely no way I was going to be able to retain.  Fortunately, the PA had come armed with reams of print-outs that she just got off of some website – a very reassuring way to approach one’s headlong plunge into voluntary receipt of toxins – so that I could take them all home to put in a pile where I would never have to look at them again.  All I knew was that the range of potential side effects was so varied and voluminous that it seemed like pretty much anything I would experience out of the ordinary was due to the chemo.

So despite my best efforts to be as uninformed as possible about things such as “unusual bleeding,” tarry stools, and hair loss (an issue the helpful PA pointed out that I was “obviously already suffering from just based on looking at” me) I left that session with more information – and more to worry about – than I could ever have dreamed of.  Consequently, when the chemo actually commenced a short time later, I was well-prepared for the nausea, metallic taste and constant pain in my veins that had been promised.  (Author’s note:  I did not experience any such tarry stools.  TMI?)

As awful as chemotherapy is – and it is really terrible – there is a certain sense of security and comfort, strangely, that comes with it.  Part of the explanation for this is simply the level of care and concern that one enduring chemo is receiving on a near non-stop basis.  Oncology nurses are cut from a different cloth, and they are able to not only treat the miserable physical manifestations that are inherent in chemo but to also provide a level of emotional succor that one would think could not exist in such a daunting setting.  The other piece of the puzzle is the fact that undergoing chemo is doing something.  It is fighting back against this most loathsome of diseases.  And chemotherapy patient is a full-time position, make no mistake.  Consequently, one’s mind and one’s body are collectively engaged in joining battle against this foe.

Yet all of that suddenly came to the most abrupt of endings.  As has become customary – and controversial – at the culmination of the last day of chemo I rang the infamous bell that some view as a celebration of survival of the treatment and others view as a foolhardy thumbing of the nose at the malevolent cancer deities.  I won’t say which of these two views I share (except that it is not the former).  But as soon as that bell stopped reverberating, things immediately began to change.

I was physically in remission – although not cured – but psychologically new troubles grew seemingly as rapidly as the white cells I had just finished knocking off had done to get me in this mess in the first place.  The first sign of trouble was on my initial post-chemo visit, where the oncologist told me that we would need to wait two years to determine if all I had been through had actually been worth it.  Two years!  This was a rather unwelcome tidbit of information.

The next blow was the arrival of an inexplicable sense of anxiety.  I would be lying if I said that I am not normally a rather Nervous Nellie, but usually those anxieties are at least somewhat rooted in reality.  These post-chemo alarms were completely detached from fact and yet they felt as real as any.  Each morning, for example, I would awake and hear a noise that convinced me something fundamental to our house – a pipe, the a/c, the heating, the roof – was breaking, when in reality it turned out to just be the dog’s breathing.  (She must have allergies.)  Work too became almost impossible to tolerate, in part because I am a lawyer so it is never far from being wholly intolerable, but also because I was so constantly uneasy that it undermined all sense of confidence that I had in what I was doing and what I know.  Hopefully none of my clients will read this.

After a few weeks of this, during which the conditions only worsened, I called my doctor.  She explained that what I was experiencing was survivor’s guilt.  As much as I love my doctor, I was not convinced by this explanation:  Call me selfish, but I don’t feel guilty about not being dead yet, a position easier to maintain given that my cancer is still with me, even if temporarily on a leave of absence.  Unsatisfied, I then spoke to a psychiatrist.  She labeled what I was experiencing as PTSD.  That seemed more on-point, although even that feels like I am over-stating my suffering, as unpleasant as it was.

Whatever it is or whatever one wants to label it, I was wholly unprepared for these post-chemo issues.  I have spoken with many others who have undergone chemo and found that this is far from a unique experience.  What’s more is that those others also were completely unaware that this would be their lives after treatment.

I do not fault anyone for not warning me that these post-chemo troubles were possible.  But I do wish I had known that this was a possibility (or, perhaps, a probability) as it would have allowed me to mentally prepare for that which was likely to come.  Without this awareness, I was left not only with the problems that I described above, but with the crushing disappointment that the life I had so desperately hoped to immediately return to upon culmination of my treatment is not available to me – at least for the foreseeable future.

:-)