Change happens quickly, like a sudden and unexpected storm, or with glacial slowness.
Our turtle marathon has included both varieties, ranging from the urgent induction chemotherapy, that occurred within days of Julie’s leukemia diagnosis, to the infinitesimally incremental (watching blood count numbers climb by decibel points on her electronic patient portal).
Throughout most of July, the Moser twins slept about 11 miles from one another, with Julie at the Dartmouth-Hitchcock Hilton and Randy staying at the nearby Shaker museum in Enfield (at the Great Stone Dwelling). Randy would wake to mist rising between mountains and the lake and Julie was woken at 4 a.m. for blood tests.
It was an unfair and uneven distribution of living arrangements, obviously, but it allowed a worried husband to spend most days by the badass’ side.
We’re now back together – along with the happy hobgoblin, Alvin, of course – at our home in Concord. While Julie’s body rebounds from high-dose chemotherapy that can be literally lethal to some people, her DNA has begun to mingle with our German friend’s, a change of the most fundamental nature.
Other changes (to employment statuses, for example) buzz like glitches in our machinery, too, and chaos is in the air.
But we change together, like we’ve always done before, and love centers us, both to one another and to you, our families, friends and loved ones.
We abide by new rules (no take-out food or playing in dirt, new daily rituals and medications and constant hand-washing, particularly after loving up the dog). We adapt, in other words.
Phase four – where we are now in this adventure – has two parts:
1. Pre-conditioning chemotherapy and radiation, the bone marrow / stem cell transplant, then two full-days of high dose chemo. (Check!) We have new pills! Two of them immunosuppressive and intended to tame Julie’s cells so the donor cells see nothing it wants to fight, and pills to combat fungus, bacterial, and viral infections.
Pulling out of this bus station has left Julie very tired and she has bone pain (normal as her counts recover) and some brain fog (chemo-brain). On the positive side: Although Julie had some early nausea, bowel issues and pretty profound hair loss, she didn’t have many of the expected symptoms: high fevers, vomiting, inability to eat, extreme weight loss, etc.
Her medical team told her “We NEVER see this. You did incredibly well, which makes us optimistic about your engraftment.”
2. In about three weeks Julie’s donor cells will begin engraft (to replace her own system). It takes about 100 days for this to be completed, at which time she’ll get a bone marrow biopsy to see if the leukemia has returned.
The first three months typical reactions might include whole body rashes that itch and / or burn, liver issues, digestive issues, pneumonia or other more severe issues (Julie’s medical team feels like she’s not at risk for the more serious issues). The entire recovery is expected to take between 6 to 18 months. She’ll likely have to go up to Dartmouth-Hitchcock weekly for daylong clinic days for anywhere from 6 months to the rest of her life. Everything depends on her blood numbers and other genetic indicators they see over time.
How you can help:
As we say, we are extremely grateful for everything our tribe has provided, from words of kind support and prayers to helping us with cleaning and meal preparation and donations. If you haven’t yet but would like to help, consider:
Donating to the GoFundMe campaign: As we move from this phase to the next, Julie will likely need to be put under Randy’s insurance policy – He begins a new job at Harbor Care next week, transitioning from a very part-time marketing consultant to the director of marketing. Truly, an entire blog post will someday be written about HC’s flexibility and generosity – but that will mean resetting deductibles from low ones to high ones and carrying Julie’s university insurance for months, while things settle. There have been and will be medications that must be paid out of pocket, as well, and other costs directly related to this adventure.
We’ll try to post every two weeks or so throughout the next phase. Until next time, thank you, fellow Camp Kickass participants!
- Randy, Julie and Alvin