The Evaluation phase of our time with the Aqua Transplant Team was spent gathering data, data, and more data. Then we had our “Data Review Meeting” in which we, um, reviewed all the data.
Every organ and system in my body was assessed in just over three weeks. There is only a tiny asterisk next to “cardiology.” Follow-up exams will be conducted to determine the safest way forward.
Data, data, and more data
In all, I had 42 exams or discussions, including appointments with the Transplant Team, the Finance Office, Palliative Care, Gastroenterology, Clergy, Social Work, Therapy, Endocrinology, Gynecology, Cardiology, Respiratory Function Specialists, and Dentistry. There were six blood draws, four runs to the pharmacy, and nine trips to imaging and procedure suites for tests that included a bone marrow aspiration and biopsy, two EKGs, a colonoscopy, a full-body PET scan, a full-body x-ray, a Chest CT, and MRI, and a brain MRI.
At times, it felt like I was back at work with a calendar of back-to-back meetings. The degree to which we were insanely busy is mercifully only most evident with hindsight.
Oh, and there was one midnight run by ambulance to the UW Emergency Department with 12 hours in the hospital. It turns out that I’m allergic to the contrast material used for the Chest MRI. My reaction was severe and concerning to all. Five days of prednisone (grrrhh, not a user-friendly drug) and a few days of hydrating like crazy took care of everything.
Our lives have been like living inside a Mario Brothers game.
Normal still
Somehow, amid everything, we continue to have a “normal” life, including six Zooms with loved ones and five meetups/dinners with local friends. I was also pleased to manage to participate in Zooms for three MMWG (Monday Morning Writers’ Group) meetings (each at 6:30 am PDT), eight writing workshops, three meetings with editors, and my first-ever submission to a writing competition. (Maybe there will be more exciting news in the future.)
We are nearing the top of the rollercoaster and ready for the dizzying ride ahead. Jackie and I have done all we can do to be prepared. We are confident and ready to “git ‘er done.”
In or out?
Initial discussions with the Transplant Team indicated that I would spend the entire transplant portion of the treatment at UW Hospital. That’s changed. Tests and evaluations suggest that I can do the transplant as an out-patient. Jackie and I are game for it. There are definite advantages. High on our list is that we can sleep together in our own bed without someone checking my vitals or doing blood draws, interrupting our sleep. We also get to eat the food we’ve painstakingly prepared.
Jackie can do all her usual activities — shower, laundry, reading the paper, keeping her spreadsheets up to date as she likes — and we can Wordle together, something we enjoy doing each morning. I can gaze out our floor-to-ceiling, wall-to-wall windows in our temporary home on the 7th floor in a high rise in Seattle's South Lake Union neighborhood. We are only four blocks from the Hutch Cancer Center (Yes, we often walk it.) and a 12-minute drive from the UW Hospital, where Hutch occupies the two top floors. Our cozy pied-à-terre has an expansive view of the Space Needle; something is always going on to capture the attention. I’ve often heard Neil Diamond singing “Beautiful Noise” in my head, and when I am awake in the wee hours of the morning, instead of stressing about it, I chuckle to think that I am, in fact, “Sleepless in Seattle.”
We will have stringent At Home Care Practices to help us avoid introducing infection to my weakening immune system. Being at home lets us avoid the risk of Healthcare-Acquired Infections (HAIs), though I’m pretty sure the Hutch floors at UW are ultra-clean. We will need to check in at the clinic every day, even on weekends, which may be challenging some days; however, since I must keep my body moving, daily clinic checks will motivate and help facilitate activity. There is still a 60-70% chance we’ll have to check into the hospital for a few days if an old virus or infection takes hold. We are prepared if that table turns.
Next . . .
Moving on from the evaluation phase, our next step is stem cell mobilization. We begin Wednesday after this holiday weekend. This step is a three-part process.
Hickman Line placement. This is a soft, small, long, hollow tube (central venous catheter) that will be placed on the right side of my chest wall into a vein that leads to a larger vein just above my heart. A Hickman line is used during the transplant process to access veins, and it might be used to give chemotherapy, intravenous medications, nutrition, and to draw blood for labs.
Growth Hormone Injections. A couple of days after the Hickman Line placement, I will start receiving injections in my belly (A distinctively different belly shot than what you might think.) of Filgrastim SQ morning and night. This is a GCSF (granulocyte-colony stimulating factor), a protein used to increase the number of stem cells in my bone marrow and push them out into my peripheral blood, where we can easily collect them.
Harvest Stem Cells. When we’ve created and nudged enough stem cells into my bloodstream, using the Hickman line, I will connect to an apheresis machine, which separates the stem cells from the rest of my blood.
Apheresis and I are old friends. Before cancer, I was a regular blood donor. Because I have O- blood that is also CMV negative (a virus common in most people, but I don’t have it), I was regularly called upon to donate platelets for Leukemia patients and NICU babies. When I was matched to a particular patient, I would spend about 3 hours a night, every three days, to give the patient their best shot. It’s an easy, though tiring process.
When my stem cells are captured, they will go into a bag with preservatives and head to the freezer; the remaining blood will be returned to me. Our target is at least 4 to 5 million stem cells, enough for one transplant. I’m hoping for a redundant harvest of 8 to 10 million stem cells to have some in the freezer for future use if needed. (Of course, I want to batch process and store extra in the freezer!)
Later . . .
I’ll get about a week of rest after Stem Cell Mobilization before we move on to the main event — high-dose chemo to destroy (nearly) all myeloma cells (and other innocent cells, too) followed by the “rescue” Stem Cell infusion, called Day 0. After that is recovery with a special milestone at Day 100, the time by which I will likely be past significant side effects and complications.
Notice I’ve identified very few dates with these events. Jackie and I learned that anything can happen along the way, and being nimble is a sanity strategy.