When Cancer Comes Before Covid
After a Year of Treatment, I Dreamed of the Freedom 2020 would bring. Instead I had to Settle for smaller -- Yet Still Beautiful -- Wins
Staring at the syringe on the bathroom counter, I wondered how I would ever summon the will to plunge the needle into my stomach. It seemed an impossible action, like in a dream where you try to run but your legs don’t work. I have always had a fear of needles so visceral that I would almost pass out (but not quite — that might’ve at least put me out of my misery). I participated in a few sessions of hypnotherapy in hopes that I could get better at facing the many blood draws, IVs, and bone marrow biopsies that would now be a regular part of my life since being diagnosed with multiple myeloma at the end of 2018.
Multiple myeloma is a cancer of the blood’s plasma cells, the white blood cells responsible for making antibodies, which protect us from infection. In someone with myeloma, these cells proliferate, leaving no room in the bone marrow for the cells that make platelets, red blood cells, and other white blood cells. About 32,000 new cases of myeloma will be diagnosed in the US this year. There is no cure.
Channeling my hypnotherapist’s calming and empowering words, I braced myself for the daily injections of Neupogen needed to increase the number of stem cells in my blood in preparation for two stem cell transplants in one year. The first couple of self injections were difficult; I lost my nerve a few times and the needle bounced off my belly as if blocked by an invisible force field. But it’s amazing how you can get used to anything — especially when you’re fighting for your life and family. I am proud to say that by the end of the two weeks of daily shots I could handle the injections, if not quite like a nurse, then like a shaky-handed middle-aged woman determined to get the job done.
The process of collecting stem cells, which is called apheresis, is exhausting. A machine continuously circulates your blood as the stem cells are separated and set aside for future use. Although it’s not painful, it is a very strange and unpleasant feeling, kind of like when a part of your body that has fallen asleep starts to wake up again — tingling and buzzing — but throughout your entire body, for hours and hours.
On May 7, 2019 (ironically, my 24th wedding anniversary — in sickness and in health for realz), I checked into the cancer center for the first transplant, and received an infusion of high-dose chemotherapy. The chemo is meant to destroy the myeloma cells, but it also obliterates all the healthy blood cells that make up a functioning immune system. The very next day, May 8 (some people call this day their second birthday), I received an infusion of my own harvested stem cells, and the supportive care began. There’s no danger of rejection with this type of transplant, but there is a risk of infection, at its highest until the stem cells begin making white blood cells to fend off viruses and bacteria. Then it was a waiting game, trying to stay ahead of the nausea and watching for the stem cells to begin making healthy blood cells again.
Structuring my time was crucial, more so because I couldn’t have visitors. Completing an acceptable number of laps around the ward without getting tangled in my IV pole and taking a shower (while keeping my PICC line dry) were the non-negotiables and took most of my energy, and true to form I tried to get them done early in the day. I signed up for pretty much everything the hospital offered — from Reiki to chair yoga to any kind of support group — just to have some human contact. Napping, listening to emotionally uplifting music (thanks, Mindy Smith), and watching episodes of Schitt’s Creek when I felt up to it, somehow rounded out my day. Plus meals, of course (anyone who knows me knows I hate to miss a meal, even if many times I could only manage a few bites). After two weeks I was discharged to hunker down at home, still isolating and vigilantly guarding against infection.
Four months later I repeated the transplant process, daydreaming all the while of the freedom I would finally have in 2020, recovered, ready to travel the world, enjoy life, and leave the restrictions of 2019 in my rearview mirror.
I was finally getting my energy back and had clearance to do certain things out in the world, when the world shut down. The new normal is hard for everyone, in so many different ways. Yet there is a special poignancy for those of us who have had the illusion of control of our lives shattered by a cancer diagnosis, striving to carve out a meaningful life within the shrunken world of COVID quarantine, while also being among the most vulnerable to COVID complications. The messages are very hard to reconcile: enjoy your life to the fullest — this is your time! Dance like nobody’s watching! — but do not expose yourself to even the tiniest risk of contracting coronavirus. Thus, a European trip, cancelled. Yoga studio membership, cancelled. Spending time with friends and family? Nope. It’s been too long, and I’m so tired of feeling vulnerable.
There is a luxury in assuming you have the time to simply wait out the quarantine. Or that midlife truly is the middle of your life. I am beginning to believe that the trick is to show up, wherever we happen to be, so that we are no longer waiting, we are being — living. Coming to accept that this moment — in this circumstance — is all we have to work with, and trying to bring as much life and heart to it as possible. I am learning to slow down and truly appreciate seemingly small moments: the sun on my face, the leaves changing, my kid laughing, and simply feeling well. And perhaps that is sweet enough. Actually, maybe that’s everything.