June 4th, 2020
| Survivor: Acute Promyelocytic Leukemia
“Everything gives you cancer …” So sang Joe Jackson in a 1980s song that I probably would like a lot more if I hadn’t actually had cancer. He warned:
“Don't work by night
Don't sleep by day
You'll feel all right
But you will pay
No booze or
Everything gives you cancer.”
Jackson sends up a lot of things in his music, and I have always been a fan. But having gone through the cancer experience (acute promyelocytic leukemia), endured high-dose chemotherapy and been part of a clinical trial (that worked, much to the relief and betterment of those APL patients who came after me), the words of that song resonate in a way his other satires don’t.
Before my cancer, my life was really good. I was married, a father to two young daughters, and succeeding in my legal career. And, as I relate in my book, sometimes life was seemingly so good that I would ask my wife, “When is the other shoe going to drop?” And then it did. And, needless to say, cancer is a shoe that drops a lot more like a steel-toed work boot than a ballet slipper. Certainly, during treatment and in the immediate aftermath, when you don’t know whether it will hold or you will slip out of remission, the other shoe hangs blatantly right in your face, and the lace holding it there sometimes looks pretty thin.
What’s this bruise? I must be having a relapse. I have been having a lot of headaches lately … maybe it’s a tumor
But I have discovered – like a lot of us do – that even as our recoveries stretch out, and the face that looks back at us in the mirror is not as gaunt (and the pate not as bald), even as the day-to-day fact of cancer recedes and “normal” life reasserts itself, there’s always the nagging reminder; the needling (excuse the pun) suggestion: it’s still right there. “Everything gives you cancer.” I hear those words reverberating sometimes. And in my work over the years with other cancer patients I have realized that many of us have cancer-related post-traumatic stress disorder (“PTSD”), diagnosed or not. What’s this bruise? I must be having a relapse. I have been having a lot of headaches lately … maybe it’s a tumor (and, with deference to Arnold Schwarzenegger, I hear myself saying to myself, “It’s naht ah tumah”). I feel exhausted, what are my blood counts? It must be cancer again. In the wake of cancer – even its distant wake – it seems like everything we experience that makes us feel a bit off, things that we wouldn’t have thought twice about pre-cancer, could be, might be, must be … cancer. It’s scary. It’s discouraging. It’s depressing. It’s exhausting. And usually, it’s not cancer.
There are several aspects of the cancer experience that can lead to PTSD: the realization of mortality that the diagnosis itself brings; the long days and nights in the hospital, with too much time to think about what comes next; the effects – short-term and long-term – of treatment; and the physical changes that can remind us every day of what we went through. And there are many things that can trigger its manifestations, whether it’s the sound of a machine beeping that reminds us of the hospital monitors, having to visit someone else in a hospital, or hearing that someone we know has cancer. Even the simplest of things – a movie we watched while sitting through treatment, the bathrobe we wore in the hospital, the food that turned our stomach during the throws of chemotherapy -- can bring a rush of emotion and anxiety. For me, it’s the smell of a certain type of antiseptic soap that was used in the hospital where I was treated. When I smell it, I am that patient again; sick, bald, thin, nauseated, febrile and scared.
I think too often about how much life lies in front of me versus how much is already behind me.
I have cancer-related PTSD. I think about my cancer experience a lot. I worry when I don’t feel well, or I have an unexplained bruise, or I feel tired out. I have trouble sleeping. I think too often about how much life lies in front of me versus how much is already behind me. Some people have nightmares or flashbacks, feel resentment or hopelessness, have trouble concentrating or turn to substance abuse. It’s critically important that patients and former patients, and their loved ones, recognize these symptoms for what they are and treat them. Psychotherapy and/or medication may be appropriate. Exercise, meditation, and pursuing hobbies and professional endeavors we may have always wanted to pursue but didn’t for a variety of reasons may all help people deal with post-traumatic stress.
I treat myself by working with other patients and their families. And that’s also one of the ways we can deal with our own post-traumatic stress. Mark Twain said that “The best way to cheer yourself up is to try to cheer somebody else up.” It’s true. Helping other people navigate the path and avoid the pitfalls of the cancer journey is, for me, an exercise in catharsis. It’s why I wrote my book, why I started a blog, and why I give my name and number to anyone going through this journey who asks for it. The process of instructing, guiding and encouraging others, I have found, compels me to address my own feelings and reminds me of how to get past them and, more importantly, that I have, in fact, repeatedly done so.
Each of us must find their own way to deal with life after cancer and the residual effects on our bodies and psyches. Joe Jackson notwithstanding, everything doesn’t give you cancer, and not everything is cancer. But everything we do in life after cancer dictates how and to what extent we are defined by it.
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Howard Bressler is a survivor of acute promyelocytic leukemia. He is an attorney practicing in New York and the author of The Layman's Guide To Surviving Cancer: From Diagnosis Through Treatment And Beyond. He can be contacted at Howard Bressler Author on Facebook and at www.wecansurvivecancer.com.