I came home two weeks ago! Today is the one-month mark since I was blessed with my new stem cells. I was able to send a heartfelt, de-personalized note of thanks to my 23-year-old donor who remains anonymous. If she agrees, which I hope she will, we can meet at the one-year mark and I can give her a proper hug and shower her with big love. Apparently gifts of any sort are no longer allowed.
I keep telling my providers, when you need someone to re-write the Stem Cell Transplant Booklet, I’m your gal. While I knew it would be hard, I really had no idea. Paul says I just didn’t want to read the fine print. Maybe that’s true. In any case, the worst I pray is behind me. I have all the right signs of engraftment, meaning that the stem cells are now generating healthy white cells, red cells, and platelets. As is typical post-transplant, it takes longer for the baby reds to bounce back, but I’m moving in the right direction there, too. And better yet, I have no evidence of graft vs. host disease, which I pray remains the case. Indeed, miracles abound.
My main job now is very basic: to rebuild and recondition. I need to eat, drink, move, rest, take the anti-rejection medication (and a slew of others to prevent viral, bacterial, and fungal infections as my new immune system learns the ropes,) and perhaps the hardest one for me: try not to go absolutely nuts waiting for all this to take place! The deconditioning is remarkable. The day before I checked into MGH on 1/16/24, I did a sprint triathlon at the gym. Now I am winded walking to the loo. Yesterday I managed to walk to the end of the driveway and back. Livin’ large!
Everything is going absolutely according to plan in the most excellent ways, and faster than many who walk this path, but I stumble on my own Achille’s heel: impatience! I don’t feel I need more time to process. I don’t want more days for reflection. I am over feeling sorry for myself. I am quite done with visualizing the marrow doing its job, I am bored of strategizing about how to swallow this pill pile without feeling sick.
I want to get back to choosing and preparing my own food, seeing my beloved patients, juggling family and community efforts and gatherings in a busy, full, fun, purpose and people-filled life! I think of myself as a grateful person and someone often acutely present to the beauty, the sweetness, the love, the moment. Here are things I ache for: long conversations with friends, laughing and playing games with my kids, walking the Hadley dike, swimming stroke after stroke in any body of water, taking Paul out for a night of ballroom, orchestrating a meeting or a party, bringing food to a friend, singing my heart out.
George Bernard Shaw said, “Two things define you: your patience when you have nothing and your attitude when you have everything.” As someone who has a life defined by everything good and beautiful, I kept a good attitude of gratitude. But patience when so little of me is actually up and running, well, not so much!
I might take a page from Paul’s handbook on patience. Never has a more patient man been born. To say he has been my saving grace does little justice to all his kindnesses, his deep dives on my care, his endless and gentle back and foot rubs, his back-and-forth driving, juggling all our work ventures, keeping the kids in the loop, cooking and cleaning, laundry and most pertinently his ongoing patient, deep-rooted, unwavering belief in my capacity to heal and bounce back. May we each have someone in our corner as devoted, as steadfast, as loving. And patient even on days where I’m sure I am not easy. The IOUs are stacking up!
Whatever you are hankering for, whatever you are waiting for, whatever you are dreaming about and making come true—may we each be blessed with equanimity and patience and understanding that with patience and devotion, and help from friends and loved ones, so many things will come in time, and that apparently, the good life is worth building toward and waiting for.
Love and Light from Middle Street.
#stemcelltransplant #leukemia #thriver #survivor #patience #allinduetime
PS If you are willing and able, there is ongoing shortage of blood products. You can read here about where and how to donate. Giving blood literally saves lives—like mine!
PPS Some of you have asked if my Field Notes from Fifty-Five Fruit Street writings are compiled in one place. The answer is yes, numbered here in reverse order! And yes, you can share as you like.