Dear Jack

Claire V

Active LifeList Participant

I have had cancer since early 2018. I noticed some alarmingly large lumps in my neck and had multiple biopsies of them at a cancer center. I was told it wasn’t cancer. I spent three and a half years getting sicker and sicker. I went to several oncologists, cancer centers, and probably every specialist in New Jersey. I was told by two separate oncologists that “if this were cancer, you’d have been dead a long time ago.” I had chronic severe pericarditis and it took them years to order a basic echocardiogram of my heart. I’m legitimately not sure how I survived that pain, but during that time I graduated college and finally began streaming. By this point, my cancer had progressed so much I was basically passing away. I lost twenty pounds in two weeks, and I was so sick. Fortunately, the next oncologist took one look at me and sent me for another biopsy right away, and I was diagnosed with Hodgkin’s Lymphoma, stage 4B. 

From here, my treatment course was dramatically different from the usual for a Hodgkin’s patient because I was diagnosed so late. I went through six months of chemotherapy that was unsuccessful and caused side effects like severe neuropathy and short-term memory loss. After this, I went through several months of immunotherapy. When I was finished with this and a few more surgeries, I had to prepare for my stem cell/bone marrow transplant. I did all my clearance, then got COVID which delayed my transplant by a week, and during that time, I relapsed. I then had to be hospitalized several times for salvage chemo. Finally, I was hospitalized for a month for my stem cell transplant. It was honestly the worst experience of my life. It was the definition of agony. The amount of pain and fevers and throwing up and everything else is indescribable.

I have a lot of permanent damage that really affects my future, and it’s hard to come to terms with. I was put on medication for a disease I tested negative for, and my doctor didn’t believe I was going blind so I now have damage to my optic nerves and intracranial hypertension years later. I also have very severe neuropathy from the chemo that made my cancer worse, which makes it hard to participate in my career as a streamer. I have tons of scars from unnecessary surgeries, and I lost about three feet of hair. I also have several circulation issues that make it difficult to use my hands on top of the neuropathy.

I am now post-transplant, and I’m receiving “maintenance.” In the clinical trial this consisted of a combination of chemotherapy and immunotherapy, but since chemo made me worse, I am just doing immunotherapy treatments. I have a PET scan coming up soon as well as another surgery, then after that, as long as I don’t relapse again, I will just have to spend the next few years getting revaccinated and staying out of public spaces and getting regular PET scans. 


Claire’s LifeList:

  1. New computer for Twitch Streaming

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