This fear isn't the adrenaline driven type spurred by cheap horror movies or hokey haunted houses, nighttime games of hide and seek, or the menacing Ouija board messages that kept us up at sleepovers. It's not the fear that takes over when a crab grabs hold of your big toe underwater or the one that takes over you as the roller coaster wheels click painfully slowly within the track as it ascends the steep uphill.
It's instead a fear that can take over my mind, permeate all of my thoughts and even wriggle its way into my chest until it forces my heart to beat in overdrive, tightens my muscles taunt, and sends my stomach into
convulsions. That's if I let it. Sometimes even the happiest music and the most seemingly perfect distraction are not powerful enough. Sometimes if I'm very happy it can be worse. This is when the fear creeps up and whispers villain-like in my ear: "This may be the last time you ever see this friend. Enjoy it now, soak it up, it's all going to be over soon." If people are too nice or situations too perfect it can set off a torrent of mixed emotions.
What is it that scares me? It's that 80% of Hodgkin's disease patients are cured with the first line of treatment. I'm on treatment line 4. It's that 2 out of 3 people don't make it through this type of transplant. It's that only 30% are cured (aka long-term remission) without any complications. Treatment related mortality is 15-30% in the first two years post-transplant from Graft vs. Host Disease (GVHD). 40% of patients end up with acute GVHD with symptoms from chronic arthritis, skin tightening, rashes to kidney failure or loss of muscle control. 20% live past the transplant but have another relapse and deal with the disease with palliative chemotherapy.
According to the Dana Farber doctor I met with, whom I think had a PhD in instilling fear (we'll call him Dr. Grim Reaper): "The lymphoma is my worst enemy." In short, even though this transplant has its risks, if I do nothing, this lymphoma will kill me.
It scares me that the type of lymphoma I have has all three factors identified as high-risk: b symptoms at time of relapse, disease coming back in more than one site, and relapse in less than a year out from treatment (try a month in my case). A place like Dana Farber has only seen 40-50 patients like me in the last 10 years.
What quells the fear? Talking to people on the other side through
mentorship programs. Doing the things that I enjoy and using every ounce of strength to kick those negative thoughts in the ass when the do creep in. Mostly this is accomplished by removing myself from the situation. When I hear these doctors outlining the grave statistics for me I tend to see myself as an outsider thinking: "Wow, this is what it's like for a doctor to give a patient some really hard news. This poor family. That poor girl." No matter what, it's not me. When things get really serious, like with Dr. Death, I just focused on the way his lips curled up into a bow like the Grinch who stole Christmas. For better or worse, not internalizing some of the really scary stuff has helped me to keep sane. Craig is the same way. A disturbing meeting with the doctor at Yale was followed not by tears, but instead by a balloon head fashioned from a medical glove. This was the funniest thing we'd ever seen.
There is nothing that I can do to change odds. I can't make the science better and I have to just shrug when I hear these brilliant doctors say to me that unfortunately, they just don't know why this happens and why some people are cured and some are not. There just aren't enough studies or advancements yet. When 80% of people are cured of Hodgkin's (the "good" cancer) at the onset of treatment, it seems that us in the other 20% aren't left with too many options.