I’m exhausted
(27) ETP-TCell ALL | Allogeneic SCT
I feel bad for feeling this way. Day +346. Just had a bone marrow aspiration yesterday. I’m on month 6 of maintenance chemo (aza/ven) and it’s been nothing but nausea and food aversions for the better part of each cycle. I haven’t had chemo since August but my platelets have been gradually declining all the way down to the 60’s. I briefly felt human traveling to see friends but immediately got rhinovirus upon returning and had to postpone maintenance chemo by almost two months— back to patient mode emotionally. My doctors seem confident in my remission but watching my counts slowly decline has put my relapse anxiety at an all time high. I’ll know if I’ve relapsed by next week so in the interim I’ve been trying to distract myself and dissociate.
I’m tired of everything to be honest. I don’t know if I can take another round of induction much less another transplant. The thought of dying so young obviously scares me straight but in many ways I’ve started to frame relapse and eventually passing as an escape from all the suffering and loss I’ve experienced in this journey. I’ve been struggling with suicidality for much of this year and have been put on Wellbutrin/Zoloft. I feel so much guilt for these feelings as I’ve seen other people with far poorer outcomes from the same treatments. I recently came to the realization that I’m trans and between facing my mortality through my body failing me and the general hatred in society for people like me it feels like everyone/everything wants me dead. For those in survivorship what did it take to bridge the gap and begin future planning again? For those who had a relapse scare but ultimately maintained stable remission what did your disease burden look like and what was the treatment process? Looking for a bit of positivity while bracing myself for the worst.