“Like snowflakes, the human pattern is never cast twice. We are uncommonly and marvelously intricate in thought and action, our problems are most complex and, too often, silently borne.” ~ Alice Childress
slowly, but surely, my immune system continues to develop itself. Aided by water, vitamins, herbal supplements, nourishing vegetables, red meat, nuts and seeds, berries, rest, essential oils, yoga, body work, and physical therapy. Sounds like a retreat anyone might enjoy, though the toils of recovery (dubbed the rollercoaster by HSCT veterans) are fascinating to experience, notice, encounter.
Some days begin with bursts of energy that fade fast. Some days see old symptoms rear their ugly head before resolve within hours. Few days include pain worse than before HSCT, which fades to nothing after a day or two. Other days a slight shift happens and what has seemed so taxing for the past few years is suddenly easy. Certain days I can stand on one leg without losing balance. Most days include greater mental clarity than I’ve experienced in longer than I like to admit. Many days I find that my brain is hungry to learn and I listen to neurosurgeons and neurologists and good work associated with changes in healthcare.
All days bring noticeable differences, sometimes (slight) improvements. Good days include restful slumber; morning snuggles, sunshine and laughter; productive writing, thinking, or reading; afternoon exercise, chores, or errands; evening reflection, assessment, and gratitude. Really good days are usually sustained with my decaf bulletproof, small meals every two hours, protein and amino acids at lunch and dinner, restorative yoga, and 60-90 oz of water.
I don’t have many really good days. yet. Which seems completely realistic and fine by me, because my immune system is just +66 days young. My lesions need time to re-myelinate. My muscles need to develop in support of new neural pathways. My white blood cells, lymphocytes, neutrophils, platelets, and hemoglobins need to multiply. My liver, spleen, kidneys, and skin need to detox the cytoxan, anti-thymocyte globulin (rabbit ATG), and steroids. This week my counts were low again (so far my WBC has been as high as 3.9 and as low as 1.9 which is far from the “healthy” range of 4.5-11.5) so I feel flu-ish. Exhausted. Body aches. Thirsty.
Low counts stifle my motivation for physical therapy. Despite the fantastic team of therapists at Premier Physical Therapy, some days I am hard-pressed to find the energy for exercises that challenge me and leave me sore for days. Yet in the moments when I walk a few paces with a balanced gait, or graduate to the five-inch stair, or hear the therapist confirm my data “looks really good,” I remember my commitments.
To health and well-being, kindness and patience. And on the really good days, when I stay fully present with my commitments, my daughter shares “you’re walking so much better/faster.” Then my heart swells and my soul smiles and my brain dreams of what it might be like in a few weeks when I can stand longer or walk a bit more steady. Then I check in with the present and take stock of all for which I am grateful: family – friends – strangers – health – access – education – donors – time – support – rest – therapy – ability. For if I spend too much time dreaming, I may not recognize the abundance of all that has already occurred.
All part of the roller coaster.
I like to ride arms up high, fingers stretched wide, screaming loud, sometimes even eyes closed (mouth closed on the millennium).
be free. be kind. be well.