I’m writing this at 1 am. I went to bed at 7 pm. Now my back hurts enough to keep me from sleeping yet again. I think this has been going on in some way since January. I can’t recall a full night’s uninterrupted sleep since then. I had been thinking it was only due to overworking my muscles, but I’ve been taking it easy for over a week now and I’m still being woken up every 2-4 hours with pain that takes an hour to damp down so I can sleep again. I even started taking naps again. No energy to do much else.
I’m experiencing more than just that too. I’ve been bloated and lost my appetite. I’ve struggled to eat enough to maintain my weight at 175 lbs. I haven’t been this weight since early college days. I seem to be getting enough nutrition. No signs of vitamin or other deficiencies, other than a lack of calories & protein. It’s hard to even know if what I feel is nausea or hunger pangs.
As recently as last week I could go through most of the day without too much pain, but now it stays with me after I get up. I’ve just stopped lifting and doing even moderate physical activities. I can hardly muster the energy to walk the dogs a mile.
This seems to correlate with my getting a PET scan tomorrow (Thursday, not this Wednesday early early morning). I’m pretty certain it will turn up something. I fear it because this is the first time that I will have started feeling the cancer instead of just the treatments. All this night time back pain is not due to chemo, radiation, or surgery. This seems to be a first for me, feeling the cancer.
It’s hard to be the person I want to be. Hurting like this really drags a person into an isolated bubble of self. I can’t stop thinking about how I feel, where it’s hurting now, how I can reposition myself. I try and pursue something needing intelligence and the pain cuts in after I get started. Then I just don’t want t do anything at all, or maybe just passively watch some documentary or stupid Marvel comic movie.
I’m getting more and more motivated to see a lawyer about finishing all the endgame details, including a real set of medical directives including terms for withdrawal of support and transferring control over to Melissa. The idea of being turned into a medical zombie because someone in my family won’t let go is horrifying to me. Now I want to ensure it will not happen, that I will be able to step out if unending suffering and loss of agency becomes my fate.
Well anyway, it’s not good. I hope we can figure this out and deal with it because this would be a hell of a fucked up way to end my life.