Welcome to a very special birthday post from me in which I mostly think about what it's like to have cancer in the time of a global pandemic. As a way of topping my last year's celebration--where I was just about to start chemo--this year the world is sheltering in place under quarantine orders as an unprecedented public health disaster unfolds around us. (Sorry if my predeliction for dramatic narratives is in any way responsible for this fact...)
I've been trying to work up the energy to post and let you know that I'm doing ok in this time of a global emergency...as ok as anyone I guess. I should say right off the bat that I am not, right now, immunocompromised, although I am at risk for it. We can all hope my system keeps bouncing back as it has done to keep me out of the most vulnerable group. (I do also have lung tumors, so a respiratory infection would automatically come with complications.)
Mostly, I spent a lot of the past two weeks wondering not if but how the pandemic was likely to affect my cancer treatment and I finally have enough information to confirm that, as of now, I'm still able to stay on the study and get chemo as planned this coming Thursday (April 2nd). I had been scheduled to get CT scans on Tuesday, March 31st to assess whether the treatment I started at the end of January has worked well enough for me to continue on the clinical trial. Although I get so many that it has perhaps come to seem routine, "scanxiety" is a very real phenomenon because these are how you learn whether things are going well (or well enough) or whether the disease has "progressed" and you have to regroup and try again with a new treatment plan. It had been since October that I had had a positive scan, with November showing a halting of improvement and December and January documenting the reversal of recovery. So obviously I was anxious and wanted them as soon as possible.
Hearing reports of "non-essential" treatments being canceled, my Penn oncologist and I decided to try to move my scans up. After many phone calls and the efforts and good will of a number of doctors and hospital staff I was able to get them on the 23rd in Princeton (avoiding both the drive into Philly and the potential for exposure there). I'm glad we did because I learned yesterday that the treatment has been working fine; not great, but well enough that a) some tumors got somewhat smaller, b) no tumors got bigger, and c) no new metastatic sites were observed. Clinically, that's ruled as "stable disease" b/c in order for it to be a "partial response" you have to have your cancer go down by at least 30%. But reversing the trend of growth is still a win, and perhaps more time will see more results. And crucially, I do not have to investigate a new treatment option or try to change in the midst of what is soon to be the crest of the pandemic wave of cases. It's only relatively lucky, but I will take it!
I have also seen reports in the cancer community about people having their chemo canceled as non-essential, which was shocking to me. I wrote last year about feeling like cancer should always be a "red ball" case that gets rocketed up the chain for testing, insurance approval, etc. and being shocked that it just wasn't. I understand that in some cases where a cancer patient is immunosuppressed, even attending a treatment at a hospital may pose greater risk than delaying it because the risk of infection is such a threat. But that is an extraordinary statement to make, amidst a daily barrage of extraordinary statements. Not all the stories were that clear-cut, though, so I was glad to hear from my doctor that as a stage 4 patient my scheduled treatments will not be bumped. I cannot have any visitors (and it's a pretty rough thing to do alone), but I can and will get through this. We all will. Because we all have in us more than we know.
***
Shortly after my beloved grandma died (suddenly, from complications during surgery) my dad told me that one of the last things she said to him was that she would be ok because, "I'm a warrior." And she was. From a tiny place in the woods of east Texas, as a teenager she ran her family's store during the Great Depression and cared for a mess of brothers. When my daddy was eight years old, she and my grandfather picked up and moved away from a community where they knew everyone and had for generations to Dallas--an unfamiliar big city--because his younger brother had been born deaf and they wanted to send him to a special school. She founded and ran her own school, an income she supplemented with other jobs while my granddaddy was away walking pipeline for an oil company.
When I knew her, late in her life, she had lost her sight but continued devouring books on tape and listening to the clues on "Jeopardy!". I was the first and only grandbaby and I was adored (not to say spoiled). The only times she actually saw me, before she was blind, I was just a few months old, chewing clean laundry in the basket in which someone had deposited me. As I grew up, she would feel my face, my hair, my ever-increasing height (and joke each time that "I'm going to have to saw your legs off!"). She would listen to my voice on Sunday phone calls; do crossword puzzles with me, as I read clues while lounging on her velour sofa; offer a "piece of Hershey" or a stick of spearmint gum from the same blue tin on the table in which she kept her cigarettes.
She could still piece quilts by feel, even though she couldn't see the fabric, and advised me on the 1ft patchwork square I made for my doll's bed. She was weakened, exhausted, blind, and often in pain (which she tactfully never mentioned with me around). Except when she changed to a polyester pantsuit for visiting the doctor, she wore carpet slippers and housedress with a pack of Marlboros in the pocket that she lit from a gas burner, leaning on her walker by an ancient stove. No one knew quite how old she was when she died--our best guess is eighty-three--because she was also the kind of Southern lady who told no one her real age. She was a warrior in that, despite all that had happened in her life and all that was happening to her body, she kept on going. She endured.
When I search for inspiration to continue with treatments that make me feel worse than the disease, to fight so hard to save a body that's betraying me, to stay in an increasingly terrifying world that's betraying all of us, I think of her last words. I'm a warrior. I will endure.
Believe it or not, you are also and you will too. In our struggles to continue with our lives in the face of monumental uncertainty and paralyzing anxiety, our greatest achievement is to keep on going. We fight (each of us different things) so that we may endure. It is not pleasant. It will reduce you to tears. You will exhaust all your emotional resources. But you will triumph. I have been fighting, existing in crisis mode, for 14 months and that is how I know that you can do it. You must grieve (and allow yourself time for it) for what you have lost, including a sense of safety or normalcy. But as you press on, you will find that inner strength or resiliency. I'm sorry that this is being demanded of you. It is not fair. But that will not change it. You may grieve, cry, fight, and struggle but, ultimately, you will accept that your way forward, your treatment, is to endure.
I've reflected a lot on social media about how living with stage 4 cancer accidentally prepared me for the experience of the pandemic. I wrote a coda to an essay that will be published--likely this May--about the "Body as Data." Since the coda itself will probably change by then, the situating evolving as rapidly as it is, I thought I would share it here. Thank you for being with me and providing that community that has been the saving grace of treatment.
Love,
Rebecca
***
As of writing this essay, it’s been 14 months since my diagnosis. I have tried three different treatments, two of which were clinical trials, one of which I am still enrolled in. It is approaching my thirty-sixth birthday [it's actually today - March 29th] and everyone is sheltering in place because of the coronavirus. I have lived more than a year now tolerating the same kind of existential uncertainty and fear of an alien invader in the body that the world as a whole is now experiencing. I have played my own doctor, watching my body for signs that a treatment is working, or that it is not, in much the same way. I have tried to anticipate what will happen if I become immunocompromised (as I currently am not, but am at risk for) and given up many of the pleasures that made my life better before (traveling, going out with friends) in the name of my health. I have offered my body up as data to research scientists with the goal of furthering not just my own treatment but the survival prospects of future patients.
I did not know that throughout this year I was in training for a time when we would all of necessity be regarded as bodies with the potential to produce valuable data about the spread and effects of COVID-19. We are starved for numbers, for data on infections and recoveries and for statistical models that may relieve us of the uncertainty we feel about the future. I cannot provide that. But I can tell you to be cautious readers of data and statistics that speak with any pretense to authority right now, even though I crave them too.
Cancer is invisible and so are viruses. This particular virus can inhabit the body but produce no symptom and live for days on surfaces. It may be in us. It may be in those we love. We are in the middle of the data. We are the data.
Susan Sontag wrote in Illness as Metaphor that “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3). A pandemic transcends borders but does not do away with the kingdom of the sick. As someone already resident, I can say to you: welcome. The hardest thing about being here is the grief for what we have lost, including a sense of normalcy. The best thing, though, is what we may find: community in a time of crisis.
