Monday, March 28, 2016

Good News from Mayo

Thursday I was accepted for stem-cell transplant therapy at the Mayo Clinic, as a protocol for addressing and containing multiple myeloma. It was what I wanted, and it's a big deal that I got it. Now the challenge is making the most of the opportunity.

Here is what lays ahead:

o  Between now and when the transplant is performed (projected to be mid-July, but that's a soft date)), I'll likely go through 4-6 cycles of chemo-therapy, all geared toward boosting my kidney functions and eliminaing calclium leaching from my bones. While I've made significant progress on all of these markers across the board, I can do better and the doctors, understandably, want to make the best possible use of the transplant.

o  Once we get the OK for the transplant (because the markers are good), we'll temporarily relocate to Rochester for about 6-8 weeks, where the finer detailed road map looks like this:

Mayo will conduct their own blood tests, to make sure they align with the numbers coming back from test results in Duluth. According to what we were told yesterday, there are few surprises at this stage and 90% of the time the evaluation phase results in a green light.

Next step is collecting my stem cells. They will inject me with a shot every day that will cause my bone marrow to cough up its stem cells. The doctors will start collecting the stem cells five days later and continue that process until they have more than enough to do two transplants. Excess cells can be frozen for long-term storage and viability.

Once they have enough stem cells, they give me a single shot of something to kill off everything remaining in my bone marrow (the good and the bad indiscriminately). As you can imagine, we're talking about heavy-duty poison here and this begins a stretch where I might struggle again with the chemo. Let's say sterilization takes place on Day 1.

—Reintroduce my own cells
Two days later the doctors will reintroduce my own stem cells to my bone marrow, on Day 3.

For the following three weeks my job is recovery. By Day 6-7 my blood counts will be low and I'll lose my hair. There won't be many good days. I'll be taking heavy-duty chemo and just trying to ride the choppy waves without swamping my boat. This projects to be the darkest time.. Somewhere around Day 14 my blood counts should start to recover. From here on recovery tends to accelerate. Most transplant recipients are sufficiently far along that they no longer need close monitoring and can return home in the range of Days 18-21.
At this point the key question is how much the cancer has been brought under control: it could be anything from hardly any to full remission. While the transplant treatment is not dangerous per se (that is, few die of it directly), there is no guarantee that this will contain the cancer—which is the point of all this.
Huddling with my doctors after the transplant (perhaps 100 days afterwards) we should finally be able to make a reasonable assessment of my post-transplant prognosis—how much I can look forward to time with little or no pain, which opens the door for Susan and me to think about how to use that precious commodity. Until then it will be difficult to suss out exactly where I stand, yet that doesn't mean we have to stand on the sidelines until October.

No Trips Abroad
Though from this point on most of the chemo will be conducted as outpatient therapy, I will still need to remain near enough to Rochester and Duluth to have minimal complications with scheduling. That is, I'll need to be tethered to my Minnesota treatment centers. While brief forays out-of-state might be possible on rest weeks (between active cycles of chemo-therapy) they will be limited.

One Thing at a Time
Job One from now until transplant is my getting stronger (turning around weight loss, eliminating dependency on walkers and wheel chairs, managing daily needs and hygiene with minimal dependency on Susan, and continuing to push my kidney functions in the right direction). This will directly translate into my being to make the best use of the transplant.

Resuming "Normal" Activities
I asked my doctor when I might prudently be able to return to some of my work (as a process consultant or community networker), and got an interesting response: I can resume any time it makes sense. It's simply a question of what I have the capacity and motivation for taking on. This was something of a surprise (I had been thinking that career resumption, if at all, might happen only after the transplant and we got to see what that protocol had accomplished.)
Among other things, this significantly changes how Susan and I will be viewing the months ahead in Duluth. If we aren't looking at the transplant happening sooner than July, then I have over three months to get stronger, to enhance my capacity to handle the chemo well, and start crafting the life that Susan and I want our partnership to be. I'm limited only by my energy and my body response—rather than by the calendar (I have to wait until July) or by the stigma of cancer. Though I'm still coping with back pain on a daily basis, I'm jazzed to begin this work.

We do not have to put off conversations about what we want. We can start now. I especially like how this allows us to start moving toward a rebalancing of focus after two months that have been intensely unbalanced, coping with Laird's emerging health crisis. Now we can shift to Laird & Susan's opportunities.

Sounds better, doesn't it?


Unknown said...

Yes! Yes!

Al said...

Yes it does! And better is incredibly good. You are a strong person from the inside, with keen insight and amazing endurance.