We leave Amherst at 8 am for a day of appts at MGH in Boston Wednesday.
Slated for bloodwork, a conversation with the clinical trial nurses, meeting with the PA, and a PICC line dressing cleaning (which I immediately reframe as a spa experience! Ah the cool cleansers and new coverings, clear tape, firm loving hands delivering delight! ) Everyone there attentive and oddly laid back for a cancer center.
My blood work is responding well, meaning I was effectively punched as low as is safe without killing mem and we did a good job (read: paranoidly) preventing any kind of infection internally or from the outside. Thank you for all who helped on that. And the additional medications used to stimulate return of healthy blood are chiming in loud and clear, too.
The center stage event on Wednesday is a bone barrow biopsy to my iliac crest. The iliac crest is where you might lie a hand on your hip if you are trying to think, or maybe if you are a bit irritated. It is the moon shaped bone that arches far and away to create the beautiful hip shape we child-producing individuals boast. Mine was always on the narrow side, though curved out enough to carry little ones both in the womb and again on the hip. Such happy memories, one baby then the next, on the hip and that surprise day they realize they can grab in a bit, first with a chubby thigh, and then with an arm, too, rebalancing the whole effort, an early nod toward independence.
I am growing prouder of the hard arc of bone where magic blood-making takes place — it’s part of a 206 or so boney clan. Some of our bones are behemoth, like the femur, in contrast to the infinitesimal ones in our ears: the malleus, the incas, and the stapes, each an itsy ossicle attaching to our wafer of a tympanic membrane, creating the wondrous transmission of sound. These bones grow very little as we age, proof that it’s probably a good idea to lean in, pay attention, even to the smallest sounds.
It is our skeletal bones that design our scaffolding, that hold us upright, give us shape, provide our literal, if not figurative, backbone. Ballroom dance gave me a generous key to good posture, in fact, unbelievable to my primary care doctor, I grew half an inch in my 50s. All that dancing and urging of the musculature to uphold the spine and generate a recognizable frame. Generating more room for breath as the spine expands, the lungs inflate, too — look we are breathing life our own health, one breath at a time.
As there were never any leukemia cells in my blood, i.e., only in the marrow. I now simmer down into prayer mode, that the chemo I took through IV and continue to take orally at home, is doing everything it’s supposed to do and nothing it’s not. It will be some days before they can reach deep down to the workhorse factory of marrow and see what they find. I also know that regardless of what they find, we will launch into round two of this strategy in one week. Read here: one more merciful week at home, puttering in my kitchen, holding my man, savoring the sounds of the night air, this exquisite August perfection of breeze, and square lank of sunshine pouring down my skylight onto my king-sized bed. Going to have some visitors as my energy re-coups and plotting an outing of someting normal, can’t decide what yet. Also going to remember not to push myself. It’s a hop, skip and a jump to “oh dear I need to lie down.” I am working to embrace my limitations without judgment. Leaning into: “I am a human being, not a human doing.” As I emerged last night from the dexamethasone crash, I felt fully home and back to myself cranking on my guitar Marren Morris’ MY CHURCH. All faiths work at times like this!
As I advocated for Ativan and Morphine to counter the excruciating pain of the biopsy yesterday, today I walk through the valley of the not entirely unpleasant drugged haze. I have never felt drunk and have not yet tried marijuana. I have never experimented with more compelling recreational drugs. I can hear those of you who imbibe snicker just a wee bit as in — see how that helped you AMY!!?? LOL.
All I can say is, I truly understand why people do mind-altering stuff. Maybe in the new year, I will finally turn that leaf and join the ranks of the universe with mind-altering recreational activities. I bet there’s more than a few of you who would love to join me on such a virgin adventure. I’d probably be funny, or charming, or smart. Or I suppose I might just fall asleep!
Treatment here tries to pull away at the fabric of life, the material of health, in predictable and studied course down through a personal and lonely trough. But back home now, on less medication, I lean into my body memory of strength of structure. I am taking a deep bow to the life-living capacity of my bones, this digestive process, the power of rest, my strong mind, our precious familial love affair, our beloved secret sauce elixir. The lyrics from Suite Judy Blue Eyes ring in my head, taken way out of context, but this quartet rings true:
Chestnut brown canary
Ruby throated sparrow
Sing a song, don’t be long
Thrill me to the marrow
Visualizing my thrilled marrow, with a new chance to make better cells, non-cancerous cells and to sit perched all around, with the good guys, making room for the new, better looking, better functioning, and all-seeing good guys, only the best stem cells for this open-hearted, open-marrowed-woman.
With love & light from Middle Street,
#thriver #survivor #naturopathic #leukemia #overachiever#wecandohardthing #humanbeing