September is Blood Cancer Awareness Month and around this time of year I always make the same snarky aside: To me, every month feels like Blood Cancer Awareness Month as I’m never not aware of my condition. Such is life with chronic illness—even when I am feeling good, and joyful, and present, I remain guarded, anxious, and disconnected from the moment. There is a running commentary regularly playing at a low frequency in my brain, quietly whispering that things may not be as wonderful as they seem. All is certainly not right in my world.
More often than not, life has been difficult.
In May of 2013, I was diagnosed with multiple myeloma, a cancer of the plasma cells that begins in the bone marrow and crowds out and reduces the number of healthy blood cells that a body can produce, leading to anemia, a weakened immune system, kidney issues and/or bone damage. In the decade-plus since, I have been hospitalized more times than I can count, almost died three times, coded once and needed to be revived, and have received two transplants. I have run the gamut of chemotherapy drugs from traditional approaches for treating myeloma to experimental ones, developing a love-hate relationship with steroids along the way. I have fractured ribs, dealt with debilitating bone pain, and have been so exhausted that it hurt simply to be awake.
Given these circumstances, I have found it at least beneficial if not helpful to lean into the absurdity of it all.
Rather than get mired in existential despair (Why me? What did I do to deserve this?), I dove headlong into grim acceptance (Well this sucks), while also administering a healthy dose of dark humor (There is no greater form of self-sabotage than having your own body try to kill you on the regular). One hears so much about embracing the “new normal” that is life with cancer and on chemo, that I vowed to live in defiance of my diagnosis, continuing daily runs until the pain became too unbearable to walk or stand (I’m as healthy as a horse… with cancer!), and stubbornly clinging to my job as a teacher of young children despite the ever-present threat of germs and the exhausting nature of the work (These kids are going to be the death of me—literally!). It was neither the smartest, nor the healthiest approach to take, but it was the only way I knew to go forward.
It all came crashing down in 2019.
I had burned through all available chemotherapy options at that time, and my quality of life deteriorated rapidly. I received a bone marrow transplant on Halloween of that year—tended to by nurses dressed as R2D2 and C-3PO no less (Will the force be with me, or will I inevitably head over to the Dark Side?)—and struggled mightily to recover, only to relapse after 8 months. At that point, I went on disability and endured a number of experimental drugs with varying degrees of efficacy until November 2022, at which time I received a second, relatively new kind of transplant, one involving t-cells, that has proved to be largely successful. I am still learning about and navigating the side effects of this treatment, the most pronounced of which is bone-deep exhaustion that can last for weeks at a time. There are also random, intense body pains and the familiar suppressed immune system (Hello, old friend!), yet I consider myself to be in good health (Enjoy it while you can!) So why the destructive thoughts?
Aside from the obvious trauma associated with my body randomly trying to destroy me seemingly out of nowhere and the subsequent trust issues I now have in my own skin, there is the learned “doom mentality” that comes from the fact that treatments eventually fail and that chronic illness is… well, chronic. Multiple myeloma is an incurable cancer. It can be controlled, but it is incurable, nonetheless. In my case, it is currently well-contained, but, time and again, it has proven to be relentless (I excel at being self-destructive!), whether in the form of my energy levels, my pain management, or my bathroom usage (TMI!)
Even when my health is good, there are daily reminders that my gauge is relative.
For the most part, I have made my peace with waiting for the next major disaster to arrive. It always does, and when facing chronic illness, it feels like the responsible approach to take. Even so, if there was one characteristic I wish I could get back, it would be the ability to dream, to envision a future of possibility. Out of necessity, I have spent the bulk of the last ten years dreaming about staying alive, about making it to tomorrow. Currently, my tomorrows look more promising than they have in a long time (Don’t jinx it!), but I still struggle to look too far ahead. Cancer has run roughshod on my body, prevented me from pursuing my livelihood in a job that I loved, and has taxed me and my family in countless other ways. It feels selfish to hope for more when maintaining survival is the top priority. While I am grateful to have achieved some relief, I can’t help but think that fighting constantly for the present means permanently foregoing the future. Honestly, that’s a tiring way to live.
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