Update 2023-0814

Stem Cell Transplant Unit

The big news this week is that we “arrived” at the Fred Hutch Bone Marrow and Stem Cell Transplant Unit. This means I am officially on my way to the next step in my treatment. We have a new team and are “vibing” well with them.

Aqua Team

Evaluation Phase

I have completed “induction therapy,” during which I achieved a VGPR (very good positive response). We reduced the amount of cancer in my marrow and its effects on my body to a very low level. We are now in the Evaluation for Transplant Phase. I have 17 appointments in the next two weeks and more being added every day. Every organ and system in my body is being assessed for its ability to weather the transplant. Special blood testing is identifying the best donors for blood products I will need.

The tests are also finding out what viruses I’ve ever had. Many viruses stay with you for the long haul. When we destroy as much of the myeloma cancer in my bone marrow as possible, along with my immune system, those viruses could reactivate. The Aqua team will be ready to be my surrogate immune system, ready with the right medication to address whatever comes up.

Inpatient

Already it has been determined that I will spend the transplant portion of the treatment in UW Hospital. That will last about three weeks, likely starting mid-September.

Of those doing a stem cell transplant on an outpatient basis, I think the number is 60% of them end up in the hospital for at least a few days to combat side-effects and complications. Infection tops the list of “Go To Jail” card occasions. Dr. Holmburg said, “Mary, given your recent sepsis and other treatment reactions, you are 100% guaranteed to need hospitalization and it is safer to have you in the hospital through the entire process.”

Doing the transplant as an inpatient versus outpatient, answers one of our regularly asked questions, “How will we keep me safe, given what I’ve experience so far?” Jackie and I appreciate the necessity of hospitalization, but are still disappointed. (Don’t you just hate it when the right answer sucks?!) Hospitals are not great places to rest or recover with the frequent disruptions, little undisturbed sleep, risks of hospital acquired infections, and the need to recruit additional friends/family to help us get through this part of the process.

Hair

Other news of the week is that I have cut off my hair. I decided to “harvest” my hair now to have the option later to have a custom wig made.

Hair

Batch Cooking

A wise woman told me, in a very directive way, that my current mental focus needs to be on Beauty, Comfort, and Convenience. (Thanks Eve.) In my world, that includes exercising an awareness of the present and looking a bit ahead down the road. I’m feeling terrific right now, but we know that is going to change. One of the ways to address comfort, is to make mealtime easy and delicious. Jackie and I have been batch cooking our favorites and creating double-serving dishes, frozen and vacuum sealed. These beautiful MRHs (Meals Ready to Heat) are some of our best tried-and-true meals. They will make more than 75 mealtimes extraordinarily convenient.

Batch Cooking

With Gratitude

It’s interesting how my category of thinking has shifted during these early days with cancer, or maybe I’ve just intensified what has been there all along. As I think of this, I’m remembering that nearly every meeting I went to during the first three months of my sobriety in the Fall of 1980 was about gratitude. Back then, I assumed the people who led those meetings had no imagination and were simply leveraging the season of Thanksgiving to come up with a meeting topic. Today, many times throughout the day, I notice something that makes me feel grateful (and Thanksgiving is still far away). Have you ever noticed how nice gratitude feels? I find it a very pleasant feeling indeed and I enjoy engaging in this process often. I like that it is a feeling that can be shared, bestowed on others too. That’s pretty cool.

I could weave the most beautiful words imaginable and not adequately express the gratitude I have for the beloveds in my and my beloveds’ lives. Each of you, in your own fashion, make your love and support known. Every bit of it helps. I pause to take in and visualize your gestures as healing agents in my confused body. Your texts, calls, FB likes, prayers, candles, books, meals, task help, sparkles — it all matters. I am sometimes overwhelmed in the most wonderful way by the goodnesses being showered on us. We feel every bit of it and am grateful.

May you stay safe, be well, love much and be loved, and have a life of ease.  💕

With all our love,
Mary & Jackie