After being on a slightly lower dose of steroids for almost four weeks, it seems to be holding steady at a point where I’m not as bad as I was before any steroids, but walking to the water cooler at work or getting dressed in the morning leaves me panting. Part of it may be exhaustion as well. The lower dose thankfully lets me sleep without interruption but I still have steroid insomnia so at most I get ~6 hours.
I’ve been really bad about protecting my time/health at work (more 10-12 hour days than I want to admit, and carrying home too much stress). Then when I get home, I stress about spending my free time well. I keep meaning to meditate mid-day and evening and then the day gets away from me. How could I go through cancer twice and still be so bad at self-care? Then I start giving myself crap and stressing about self-care too. Oops.
I can’t stay on steroids forever, but the path forward isn’t clear. Do we continue tapering and this is just my “new normal” or will it improve on its own?
I can’t keep expecting myself to be “perfect” at everything in life but some things (helping others, cancer prevention steps, my work, creating something away from work that expresses some meaning, traveling to spend precious time with friends and family) are also very important to me and I can’t let them go. I also can’t act like there’s plenty of time to do everything I need/want to do. Again, there’s no clear path forward.
My six month PET scan is in a couple weeks. I don’t spend a lot of time thinking about survival odds and I have every reason to believe the results will be good… but it’s a question mark and another unclear path forward.
I’ve spent all these years immersed in game dev where we talk a lot about work/life balance. Now I’m learning about work/help/love/friends/expression/rest/care/time/healing balance. All of these things matter so much to me. I need the zen of letting go without letting go.
I have faith the path forward is there, even if I can’t see all its twists and turns along the way. Finding it and walking it is what will give my time meaning.
I routinely encounter folks dealing with serious illness (mostly cancer, in my circumstances) who accept whatever the first doctor they meet tells them, even if what they’re told is that there is no hope. I
Last year, I was in the hospital from chemo for my birthday, not knowing the cancer would blossom again months later. This year, I’m walking around San Francisco–short of breath sometimes, but walking–looking forward to
The every-other-week treatment schedule has become habit at this point. In at 7:45 am, IV and blood draw, discussion with the trial nurse, meet with Dr. Ani, get the blood test results, then infusion and