Survivorship Is its Own Diagnosis

Here I am in the emergency room with a horrible sore throat with open lesions, soon to be classified as coxsackievirus. I’m 48 years old. The virus I contract on a yearly basis usually affects only small children. I, unlike most adults, don’t have a spleen, which was removed as a preventative surgery in 1984 to treat my Hodgkin’s lymphoma. The removal compromised my immune system, and I will for the rest of my years be a bit more fragile to the elements in our environment. I’ve learned to live my life in a very different way, the way of a survivor. This sounds heroic and warriorlike but in truth, it feels like my path is more like a thin tightrope, where one misstep leads to a treacherous fall.

I was 11 when I got inducted into the survivor tribe. No one eagerly signs up to have this badge, trust me. After a staging laparotomy that tore apart my abdominal wall and wreaked havoc on my core region with serious scarring internally and externally, I was blasted with 3,900 cobalt rays of radiation to my chest and abdomen in an effort to kill off the cancer. The assault on my body failed to cure me but what it did do is create major issues for my thyroid and degenerate the muscles in my neck and cervical spine, and my heart suffered as well. It also would cause a secondary and third cancer down the line for me in both breasts, one at age 25 and the other at 33. Thankfully I was cured of the Hodgkin’s disease with a chemo protocol known as ABVD but with that came another series of complexities for my lungs and heart.

My diagnosis as I survived longer became more about my long-term side effects from these drugs that had saved my life….and I wondered and still wonder at times what that really means… I live and I love and I laugh and that’s what I wanted. I had children, I practice a career that I love and help others, but I carry with me on a daily basis the entrails of my treatments and repercussions to help me stay alive. I’m aware of the ones that are close to me yet still don’t believe or understand me when I say I can’t hike or even ascend a flight of steps quickly because I can’t catch my breath (the bleomycin has severely scarred my lungs and I have fibrosis). I sometimes lay in bed hearing my heart beat like a baby bird and wondering if I’m having a heart attack (I have severe aortic stenosis and tachycardia). I can’t go into a doctor who doesn’t understand my health history because they misdiagnose me every time, not understanding what they see when they look at my scans (the scarring on my lungs makes it look like I have embolisms and nodules).

I was once told by a cardiologist, “Jessica, there are no studies for someone like you. You have outlived what most have not. You’re an enigma.” I was proud and terrified all at once. I have to understand that any time I go see a doctor it may be something serious related to my past treatments. I have a specialist for every orifice of my body. I find that some of my closest parties to me in my life get annoyed at me at times and have even called me a hypochondriac. The fact is I’m not. So when I walk into the doctor’s office and the question is asked “What are you coming in for today?” My answer is “survivorship.”

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