I keep thinking that I’m almost done, almost done with this nightmare but I’ve been proven wrong time and time again. One of the best ways that I coped with being extremely ill and potentially dying was to simply shut out any negative emotions and instead focus on having the best day possible every day. This was incredibly effective in the short term, but doesn’t translate well long-term. I keep having to remind myself that life is a marathon now, not a sprint.
I have developed a fair amount of PTSD. For me, this manifests in an overwhelming numbness and fear of emotion. Every once in awhile, I will be overtaken with extreme sadness, which is terrifying for me. My initial reaction is to push it away, to refuse to feel it, but I am working on letting myself engage with these emotions with the hopes that this will help me process.
I have been having some recent flare-ups with the GVH and am back up to 40 mg every other day on steroids. I’m not sure how long I will be at this dose, but I hate it. I will have to have my central line longer as well. I hate every second of this acutely and I have extreme treatment fatigue. Ripping out my central line myself sounds pretty good right now (don’t worry, I won’t actually do it).
I am sharing this because I read a mom’s account of how miserable she was after her daughter’s treatment and it really touched me and helped me through what I was feeling. I hope I am able to do the same for someone else.
I am getting close to my first “re-birthday” which will mark one year cancer free. Part of me is incredibly grateful and the other part is resentful that I am expected to be grateful to be alive at the age of 20. Shouldn’t that be a given?
In an effort to be mildly socially acceptable I’ll add a little happy detail: after 10.5 months and my nails dying not once, not twice, but three times, I’m delighted to announce that they have finally grown in healthy. It’s the little things.