Update 2023-0729
Transplant Team, Here I Come!
The News
Lots of healing and recovery has happened since I last checked in nearly a month ago. All the medical news is good. Recent tests confirmed that my body and its myeloma treatment has held its ground since we suspended treatment after the ICU incident eleven weeks ago. I have a VGPR — Very Good Positive Response. That’s one step away from remission (CR — Complete Response) and we are on the way to that next step.
My “arrival date” to the Stem Cell Transplant unit August 9. I will need to be in Seattle most every day for appointments with care providers, tests, tests, and lots more tests. We found a furnished apartment in the city and are moving there over the next two weeks. We anticipate the stem cell transplant process will happen by mid-September. All in all, from start to back-to-Olympia-for-recovery, is expected to be three months.
How My Telling the News Is Going to Change
Of course, there’s so much more to the story, and you know I will tell it, but I’ve made some observations. Some people want every detail even when those details are complicated and hard to wrap a brain around. Some people simply want to know that I’m OK. On my side, I have a tricky formula for how much to include in a update and when to fire it. My way is causing too much time between communications. I know this because many of you have reached out and said, “I haven’t seen an update in a while. Are you OK?”
That’s changing.
I am going to send a brief update more frequently. If at times treatment makes me too sick to write, as happened in May, either Ina or Jackie will push out a brief update. Extra sparkles, prayers, emoji-laden texts, and all forms of good wishes will be much appreciated during those times. When I write longer explanations or just a commentary about this experience—and I might even get a bit prose-y about it—I’ll include a link to where you can read more. Like this:
Spoon Theory
One of my cancer support groups shared the concept of Spoon Theory, conceived by a very creative woman named Christine Miserandino. Christine is chronically ill with an autoimmune disease called lupus. Lupus takes a toll on her energy in ways that sound a lot like the fatigue and erratic energy I experience with cancer. I was awestruck by her story and …
Homecoming
When I left, I was carried out strapped down to a mesh blanket, in and out of consciousness, lifted from the floor beside the bed with blue bellies surrounding me, through the doorway, under the foyer chandelier, onto the arched porch held up by magnificent columns, the sky moving further away as we descended the steep steps, onto the waiting gurney, do…
May you stay safe, be well, love much and be loved, and have a life of ease. 💕
Appreciating your update, especially knowing healing and recovery are happening. Yay for good news and a VGPR! Updates, essays, details of any amount are always welcome. : ) Sparkles, positive thoughts, energy and ongoing resilience & courage are showering down on you and Jackie. Aug 9th is marked on my calendar. Hugs to you both, Susan <3
Alright, a plan is coming together with dates and specifics. We also like the load-sharing of updates with Jackie and Ina. VGPR is great but CR is best - got it! We're stocking up on extra sparkles as i write! Muchos Love from across the Salish Sea. J&A