Having leukemia at this time of the war is compelling with such enormous loss and tragedy in the last week, while at the same time managing my own personal health challenge. I imagine in one way or another, we are each juggling hardships, large and small while also thinking about and worrying about the terrible situation overseas. I had helpful words from Rabbi Weiner at the JCA last week: Every struggle must be met on its own scale and in its own terms.
When I think of all the smart people working on my care and the eye-popping cost of treatment, I feel guilty. How could all these resources be better used!? When can I fully give back instead of being in this receiver mode?
Hopefully in due time! In the meantime, I am back at Fifty-Five Fruit Street taking Blinatumomab. It may be an upcoming stumper on the Scripps National Spelling Bee. Blina, as we affectionately call it, is a type of immunotherapy called a bispecific T-cell engager (BiTE). I love that my treatment BiTES! Blina attaches to T cells and cancer cells, simultaneously enabling T cells to better find and address cancer cells by bringing them closer together. As a seasoned ballroom dancer, I know the power of attraction and moving close together in effective ways. I think of that when I visualize my immune system taking this dance.
The second round of chemo I had last month was further effective, bringing my total tumor load to nearly zero. This immunotherapy will carry me the rest of the way, in preparation for a bone marrow, more appropriately called, stem cell transplant—likely at the beginning of the new year. I should have few to no effects from this drug. Each day I speak one on one to my marrow, reminding it that I just need the healthy red, white, and platelet cells to emerge. I have no need or use for any leukemic cells! I am in close communication with this body I hold so dear!
Treatment is one month long, a 24/7 flow through my very capable, flushing smooth, PICC line. Never have I loved a piece of medical equipment more—true, I can’t shower without covering it, and swimming and running are out, but the ease of taking meds and drawing blood make up for those impermanent losses. I will be back to training for triathlons when this ordeal is over, so plenty of time for the pool!
The first four days or so are here at Fifty-Five Fruit Street. My docs want to be sure I tolerate Blina and do not have any allergic reaction. After that, I come in once a week to have a cartridge change and I wear a FANNY PACK with the goods. Oh My God! A fanny pack, now we’re moving into cancer fashion accessories. Then two weeks off Blina, and likely one more cycle. It feels excellent to have a plan. Now we DIVE the PLAN!
Thank you all for your ongoing love and support. I hope you’ve having a good weekend, that you take breaks from the news cycle and do some things you love with your person or people nearby. And I hope to see you, talk to you, or hear from you soon! Feel free to drop me a line at this email. During these Blina months, short visits or outings in the valley should be a definite YES!
Love & Light from Fifty-Five Fruit Street,
AMY
#leukemia #Blinatumomab #fannypack #thriver