Now, more than two months on from my hospitalization, it’s probably time for an update. Just as I predicted, the high ambitions I had to use this as my journal, a stage, and a primary mode of communication have gone unfulfilled. I think that there’s a fallacy when it comes to how my mind works regarding the urgency to write. My writing mind becomes most active when circumstances seem dire; the first few days after returning from the hospital, I scrawled ideas for posts and essays all over errant envelopes and slips of paper littering my nightstand. But those essays haven’t been realized and now those pieces of scrap paper are mostly dusty and sticky with stale oil as I flutter them aside to make room for finger bowls of snacks. And so maybe that’s good news– urgency has transformed into routine, and routine can be interpreted as stability.
The routine these days is a week where Wednesday is the point of reference and not, say, the weekend or the Monday start to the work week. Wednesdays are chemo days, and if not chemo, then an injection or some other appointment. At this point, it feels like P could probably drive blindfolded to Dana Farber. He drops me off for every appointment, then heads to the “cell phone lot,” which is just a parking garage with supposedly “robust cell service.” With COVID-19, visitors are not allowed to accompany patients, so he waits in the car. His forbearance deserves an award, given that some of my days at the clinic can take up to five hours. Meanwhile, P takes his work calls, “kicking in the front seat, kicking in the back seat” (see https://www.youtube.com/watch?v=kfVsfOSbJY0 0:34-0:44), and once on a stupidly hot day even sitting in the rear of the hatchback, i.e. the world’s worst tailgate party of one. But hey, there’s “robust cell service”!
Once at Dana Farber, there are also a number of other routines to follow. With COVID-19, all patients are required to go through an initial screening upon entering the building. Security waves you towards the screening line, where you stand (masked of course) at least 6 feet apart from the patient ahead of you (helpfully premeasured and marked on the floor). A nurse, behind plexiglass, then checks you in by asking a series of questions that follow a standard protocol: in the last 14 days, have you been in contact with someone who has a positive test for COVID-19?; have you come directly from a private residence?; Do you have new or worsening symptoms including fever, cough, shortness of breath, muscle ache, runny nose, sore throat, rash, less of taste or sense of smell? If any symptoms are present, then a call is made to your oncology department to determine how to proceed and an escort arrives to take you directly to the appropriate floor, in order to limit contact with anyone else.
Given that persistent fever has been an issue for me and is essentially what triggered writing to my oncologist months ago, eventually leading to discovering the metastases, the routine of screening has been a complicated experience. I can’t exactly lie about having fevers and although a note has supposedly been made in my file regarding fever as an ongoing cancer and/or treatment related symptom, I don’t always “pass” screening. Especially in the first few days after my rediagnosis, screening was an emotionally difficult routine, despite my knowing that it was mostly a mechanical process. There was one day, for example, where my heart started to pound as I stood in line anticipating the questions. I tried to remain stoic as I walked up to the screening nurse, but, as soon as she asked about fever, my answer came out in sobs: “yes” I gasped, “but it’s not coronavirus, it’s the cancer.” I remember being tense as a board, my arms pinned to my side like a soldier at attention, nose dripping into my mask, eyes blinking wildly through the tears, too scared to wipe anything lest I break public health guidelines (don’t touch your eyes, don’t touch your nose, don’t touch anything). As I continued to bawl, the nurse ran out from behind the plexiglass, handed me a wad of tissues, and put her hand on my arm, saying gently, “it’s ok. Do you want a wheelchair to bring you up?” At that time, with Massachusetts in the middle of the pandemic surge, that a nurse took a risk with that human touch was to me an admirable act of compassion.
I have become much more used to the screening process since then, and while still fraught, I can now deliver answers about my fevers dispassionately. I have also become accustomed to being escorted to an isolation room out of caution. It’s a bit surreal on those days as nurses either communicate with me through the door, or when they enter to insert my IV or give me treatment, it has to be done so in full PPE (gown, N95 mask, gloves, face shield). They are almost always very apologetic, explaining that they know how alienating it must feel for me to receive care this way. But I get it. These are not normal times and safety is paramount.
My current routine is not what I initially expected. IV chemo was not a part of my original treatment plan and so I hadn’t thought that I’d need to go into the clinic so often. When first told that I could think of my metastatic disease as a chronic disease, I was able to accept that characterization especially because the plan was to take a targeted therapy that came in pill form that I could take at home. It was quite literally more palatable for me to think, ok, I’ve done that before and lots of people take daily pills for lots of diseases. But unfortunately, the targeted therapy I was given, Verzenio, didn’t work for me and may even have been the culprit of the major bodily distress that sent me to the hospital. Or, it could have been the cancer was growing rapidly. I don’t know, and actually, neither does my oncologist. And so here we are again with IV chemo, which I kind of think of as the “big guns” of medical oncology. (As an aside, I don’t really love the war metaphors that are often used when talking about treating cancer, but I have also internalized them because they are so pervasive. More on that another time.)
The good news– in this context– is that the chemo I’m on, eribulin (or brand name Halaven) is working very well for me. Blood tests are trending in the right direction and suggest that the cancer is shrinking. I am incredibly grateful that this therapy is currently working and that, in the words of my oncologist, with it, I have “stepped back from the brink.” In fact, given this positive response, my oncologist wants to keep me on this chemo for as long as it continues to be effective, and for as long as my body can bear it. So, there’s the rub; cancer is smart and chemo is toxic. There will come a time that the cancer genes will mutate and eribulin isn’t going to work anymore. There will also come a time my body will say that it cannot handle the wear from this drug anymore. But then we move to the next line of treatment; that is also part of the routine, and, I do find assurance that there are still several lines of treatment at my disposal even if none of them are curative.
alwayshungryamy 