THAT part of waiting is over.

Leila gives an update on multiple myeloma and treatment: 

After leaving work in September, thinking that a stem cell transplant (SCT) would happen almost immediately, it's been a series of waits. The cancer, described by my oncologist as "an active disease" has been a little stubborn in letting go. The term remission is not widely used in myeloma-speak since this blood cancer is currently not curable - it relapses sooner or later. We went on vacation at the end of September to NC, scooting back a little early, only to find out my "numbers" had gone up dramatically, so the first pause occurred. This cancer has to be fairly well in-check before moving to SCT.  Earlier this month, we learned that it is within the limits needed to proceed. Onward to transplant.

Sure, delays are disappointing, but there has been so much good in the waiting. Kristin and I have been able to take care of lots of personal business that had been ignored for a long time. No, we did not get to that complete inventory of our household for our insurance files. We can say that our paper and electronic files are organized, including what seems like 10 million photographs. We were able to shepherd a couple of house projects to completion. Thank you, Paul, for doing the lion's share of a new toilet installation. We love it! We had the final touches done on our door and window replacement project and finally, a hand railing has been fabricated and installed on our front steps. We have enjoyed TONS of quality time together. From silliness to serious, we love spending time with each other, even after the 19 years we have lived together. 

If you're curious about the nitty-gritty - the amount of malignant plasma in my bone marrow is under 10%. Normally we don't have hardly any plasma in bone marrow at all. With myeloma and the overgrowth of malignant plasma, there are so many of these mutant cells they pushout from the bloodstream into the bone marrow. For comparison's sake my April result was 60%, on Dec. 2nd it was approximately 5%. After that excellent news, and while my Mom and sister, Claire, were visiting, I spent a day having all of my major systems checked out to make sure my body can withstand the stress of the big dose of chemo. All systems checked out OK and we are a GO this time. 

Scheduling looks like:

December 23-27 - every morning at 9, hospital for growth-factor shots which stimulate the growth and overgrowth of stem cells. This will cause the marrow to get overwhelmed by stem cells, so much that they release into the blood, which is a good thing. (So far, so good.)

December 27-29 - all day collection of my own healthy stem cells. They look for a certain quantity, in the millions, and try to collect enough for 2 transplants, in case another SCT is needed in the future. These go right into the freezer.

January 3, 2023 - I get a big, big dose of a chemo called Melphalan, which is very effective with myeloma. It will be delivered by infusion and take about 3 hours. Since I will be losing my hair this time, I plan on having a head-shaving event Jan 2nd - maybe on Zoom.

January 5 - also called day ZERO - is hospital admission day. I will receive all those good, healthy stem cells back, just like a blood transfusion. This is more accurately described as "stem cell rescue" since the chemo kills not just the myeloma but fast-developing cells of all kinds, like marrow/immune system, hair, and the lining of one's entire digestive tract. They say I will continue to feel fine for 3-4 days, followed by 10 +/- not-so-great days. I have been promised that hospital staff will be doing whatever they can to alleviate nausea, diarrhea, and mouth sores. Those are the symptoms most likely to surface.

As you can imagine, there are significant risks all along the way, but we trust this team of professionals guiding us through this process.  They have been very open, honest and transparent every step of the way.  They'll be doing everything they can to minimize any side effects or problems that may emerge.

Then on the non-cancer front, I had a rather significant dip in my mood after Mom and Claire went home. The past 6 months have been filled with change - retirement and its decreased income, not having projects for the first time in many years, lack of socializing since the weather has gotten COLD, fear of the unknown (like, how bad are the mouth sores going to be?) as well as wondering about my prognosis after the transplant and life expectancy. I am making friends with uncertainty and most days we're doing just fine.

More to come.

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