Ugh. What a week. It turns out that tapering off steroids comes with more negative side effects than I’d realized and they’ve all been hitting hard. I’ve gone from feeling the best I had in a long time back to feeling pretty dang awful over the span of just a few weeks. Physically, we’re talking nausea, fatigue, diarrhea, etc. All the fun stuff those of us with cancer just love dealing with time and again. Also, my body’s cortisol levels are so out of whack from the long-term use of corticosteroids that my brain isn’t producing the hormones needed to regulate my emotions. So instead of being a fairly stable, rational human, I’m a weepy mess. Not great timing for a series of important conversations with members of my care team and family about next steps in my treatment and end-of-life planning.
On top of all that, my non-functioning left arm is hanging uselessly at my side, causing significant neck and shoulder pain. This has started to make any car ride longer than about 10 minutes (and, really, any position in or out of the car) pretty unbearable.
We are workshopping solutions to all these issues, including switching to a new steroid that will allow me to continue the taper slowly over the next several weeks, hopefully accompanied by a tapering of the side effects as well. In the meantime, I’ve decided to take a break from the Avastin and immunotherapy, to give my body a chance to stabilize. It’s unclear at this point whether I’ll choose to restart one or both of these therapies in the coming weeks. I’ve been saying for a long time now that my goal is to prioritize quality of life over quantity as I near the end, and I’m doing the best I can to put that stated goal into action. I hope I can get back to a place of better quality, but I also acknowledge that might not be possible at this stage. Without any drugs to hold the swelling and tumor progression at bay, I’m sure there’s a whole raft of other symptoms waiting for me just around the bend. Without a crystal ball, it’s impossible to know whether they’ll be easier or harder to live with than the ones I have now. My mom keeps reminding me to take one day at a time.
As usual, my support system has rallied around me this week. My lovely friends Jenn, Andrea, and Amy were here to drive me to appointments/just spend time with me. (Amy even brought her doggie, Romper, along for the drive yesterday. Yay for furry friends!) I’ve spent time on the phone with my parents and brother, as well, seeking their input as I’ve prepared to make decisions about next steps. And I’ve gained extremely valuable insights from my therapist, Tom, and from my primary care physician, whom I met with yesterday to complete the paperwork for the EOLOA. These two wonderful medical professionals — both of whom personify the word “caregiver” in its truest sense — gently reminded me this week that making the medical decisions that are best for me is not only consistent with the way I’ve handled my illness over the past six years, but is something I shouldn’t feel guilty about.
Which brings me to Mike. I truly don’t believe a more devoted, kind, loving, and patient husband exists. Seeing the heartache on his face as we talk about these difficult subjects and decisions makes me think I can endure anything for a little while longer rather than bring him pain. I have to continue to remind myself that I didn’t choose this disease, and regardless of the decisions I make over the next few weeks/months, the pain is coming sooner or later. For me (for both of us, really), it’s already arrived.
For a little gallows humor (and because I know many of you love The Princess Bride as much as I do):
PS: Thank you so much to our dear family, friends, friends of friends (and even strangers!) who have sent gifts, notes, and messages. Your support buoys our spirits and helps us feel as though we’re not alone on this journey. It’s becoming more difficult to respond to each message/card individually, but please know they are received with gratitude and love.