Today is Day 23 of my first induction treatment cycle. Some of you may know, I’ve long been enamored with the number 23. Whenever I see it in movies, on signage, addresses, phone numbers, flight numbers, highway exits, on calendars, it gives me a warm feeling and I often smile. So today, when I realized the implications of Cycle Day 23, I smiled a lot.
Day 23 of each of each treatment cycle is the first day of no chemo drugs of any kind. No Kyprolis infusion from the day before (those are on days 1, 8, and 15). No Revlimid (days 1 thru 21). Last dose of Dexamethasone for the cycle was yesterday (days 1, 8, 15 and 22), so I might still be a little steroidal. But otherwise, now I am on a mini treatment vacay until next Friday, March 24, when Cycle 2 starts. Oh yes, it’s a complicated dosing cycle and Jackie is on top of it. She has spreadsheets of inventory, and pill boxes, and alarms. I could not have a better meds manager. Keeping our eyes on the prize. We are expecting 4 to 6 cycles before we can progress to the Stem Cell Transplant. One cycle down.
I was a bit tripped up by a faulty mindset last weekend when I was considering that I was already on the “bye” week with no chemo. Nope. I’d just had the infusion and all the other KRd bits the day before. I had not reached “bye” week status; I was solidly into the peak of that chemo round … and the chemo works in a cumulative process. I was very fatigued and otherwise impacted by the hard work going on inside my bones. I was surprised that I was unsteady, foggy, and otherwise down for the count. I think that to good news is that if I am struggling, so is the cancer.
When I can’t move, I feel like I’ve rounded a corner to a
horrible debilitation that will never end.
When I feel better, I remember that there are good days or
even good hours and those are to be relished.
Last week I chose to opt out of supporting drugs for nausea because that drug is a guaranteed 2-day bad headache for me and, for now, I’m good at managing nausea with meditation and a little help from 1:1 CBD:THC gummies. But that managing takes work and patience and meditation and cooperating with a need to just be still a bit. I’m happy to say I’m feeling much better today. I’m back to doing some of my usual “normal” stuff—baking, preparing some meals, creating stuff (the newsletter format will launch within the week). When I can’t move, I feel like I’ve rounded a corner to a horrible debilitation that will never end. When I feel better, I remember that there are good days or even good hours and those are to be relished.
It does not escape me that I’m in a rarified and fortunate place to be dealing with this treatment and adjusting to this new life of perpetual cancer. I’m well supported and safe living in our rain forest paradise of the world. Jackie and I are both feeling the prayers, and sparkles, and hugs and good wishes being showered on us from all corners of the earth. Our children are all well launched and are now adults who are also responsive to our needs. We are retired (mostly) with “no one calling me up for favors and no one’s future to decide.” I have become intrinsically attuned to my body over the last five years of focusing on nutritious weight reduction (so much health benefit gained right when I need it). Our lives have been rewarding and we are happy to be living within our means.. One complaint I’ve heard about parts of the treatment is that they can be hopelessly boring. I can’t imagine being bored. Jackie says, “Find the joy” and there is much to find. There are so many stories to tell and thoughts to share. There are literally thousands of easy-effort things I’ve not yet had the time to pursue. I have the luxury to not push anything right now and completely focus on the Mission is Remission.
With love from the Pacific Northwest!
Mary and Jackie