I have been living with cancer for at least six years, which is when I first received the most unwelcome news of my diagnosis. And during that period I have had countless oncology visits, an obscene amount of blood drawn (sometimes the phlebotomist – a term I learned as a result of all of these blood siphonings – would ask if I would mind if she took some extra for “research purposes,” to which I invariably replied, “Yes, please. It’s not doing me any good anyway.”), and had my lymph nodes felt up like I was out to make it with every hematologist on the Eastern seaboard. All of this is on top of the piece de resistance, six rounds of highly toxic chemotherapy. With all of this accumulated experience, one might think I am a cancer pro. But, quite to the contrary, I have learned that I am a know-nothing in the cancer world.
This realization does not come entirely as a shock to me. One of the many, many benefits of being married to a doctor – in addition to being able to ask her “What’s this?” whenever I discover a new foreign body on my body or to wake her up in the middle of the night merely to say, “My tummy hurts; what should I do?” – is that I have an interpreter who travels on this journey through Dante’s Inferno with me. In fact, when Melissa accompanies me to an appointment, I often just sit silently while my doctor talks to my doctor. If it were not for the need to check the aforementioned lymph nodes or to make routine withdrawals from my own personal blood bank, I don’t know that my presence at these oncology visits would even be necessary, much less helpful. And while I do try to pay attention – I really do (usually) – I find a great deal of the technical mumbo-jumbo to be, frankly, a bit dry. I basically am only interested in what is going to happen to me. The rest is details, and I like to think of myself as more of a big picture type of fellow.
So although I was cognizant of the fact that I did not know all that much, it was only recently that I realized how little I do know. This realization was an unintended – and most unwanted – side effect of doing something I had resisted doing for my entire cancerous existence: being a part of any type of group of others with a gross surplusage of lymphocytes. When I was first diagnosed, I was tepidly encouraged by a doctor or nurse here and there to look into a “support group.” At the time, however, I was mostly in shock and the thought of spending even one more conscious moment thinking about cancer was too much for me. As I gradually adjusted to the realization of my new normal, I was foolishly hopeful that my cancer would never progress as it was discovered in its nascent stage. Consequently, I greatly feared that cavorting with others who possess the same diagnosis, but whose disease may be more advanced, would only give me cause to worry about what might happen. And if there is anything I have tried to convey in all of my writings it is that I need no assistance when it comes to worrying.
Nonetheless, for reasons wholly unrelated to seeking support, I have of late joined some Internet groups for cancer victims, including a couple for people with my type of cancer and who are in my age range. (One of the most frustrating aspects of my diagnosis is that it typically only manifests itself much later in life – around 60 or 70 years of age. So although living with it for twenty years may not be so awful when diagnosed at 70, it’s a horse of a different color when one is only 40: Instead of dying at age 60, I should just be being diagnosed then. I feel as though I am being cheated out of my entitled diagnosis.) What is fascinating about these groups is the knowledge that many of my fellow cancer sufferers possess about our disease. Oftentimes I wonder if these people are themselves oncologists, which they are not but if they were might pose some interesting ethical issues about providing medical advice to those whom one has never met much less examined.
But these posters and question posers are just regular people like me, except that they are not like me. Many of my fellow “supporters” seem to be almost chipper about having the cancer we unfortunately share. How else can one explain knowing everything about the mutations one can have or the deletions one should ideally possess. Or not, I really don’t know. These well-intentioned and seemingly learned cancer sufferers also eagerly attend – and promote – get togethers of members of our chosen cancer. And if there is an opportunity to hear an actual specialist in our disease, look out! It’s like the Beatles are getting back together. They even like to conduct surveys such as “Have you experienced diarrhea with your treatment?” or “If you had to do it all again, would you opt for the same treatment?” (as if somehow we were merely deliberating between chocolate and vanilla ).
Yet, here I sit. Willfully mostly ignorant. And while I do think that such a state can be blissful, there really is, not surprisingly, no concept of bliss with cancer. I do not want to judge others (I mean, I do want to, but I will pretend not to as it is more socially acceptable), but while I do appreciate the value in sharing common experiences with fellow victims of this terrible disease – things like constant fatigue, inexplicable red marks on one’s skin, bad allergies, anxiety or, my personal favorite, horrific flatulence (I of course am just providing examples here) – I do wonder about seeking what is really medical advice from non-doctors. And while most of the most vocal are the most helpful on these sites and in these groups, sometimes they provide information that, based on the little I do actually know, is at best inapplicable if not outright incorrect. Of course it is only offered with the best of intentions, but I believe there is an expression about such intentions and a certain paving surface on the road to the afterworld made out of same.
I will conclude with a final example that I think sums it up: One active poster, who quite often posts funny, if irrelevant things, stated that the chemo regimen that I had just undergone should never be used any longer. As someone who had spent six months struggling to hold down my limited breakfasts and unable to remember what day of the week it was, I was rather nonplussed to hear this. Did I subject myself to this torture not only for no benefit, but merely to set myself up for future problems? Fortunately, soon thereafter I saw No. 5, who actually is an oncologist and thus has a good chance of knowing what she is talking about, and she assured me that this zealous “advice” giver was not correct. I felt much better. Hopefully there will soon be a survey question about whether we think that giving ill-informed advice is helpful or we should just do something crazy like listen to our doctors.