Dear Friends and Family,
Wow, it’s been a month since I posted any information about my current state of affairs! That is because I feel most excellent, enjoying time with family and friends, celebrating milestones, completing some home and yard projects, and gleaning so much joy from dancing, making music and art, and taking time in nature. After my first cycle of immunotherapy, my bone marrow biopsy reports zero leukemia cells. And all my blood counts bounced back to normal. This is fantastic news—just what we are looking for. Earlier this week, I move back to Fifty-Five Fruit Street to begin a second, four week cycle of Blintubamab, to lock in these results, before I begin the conditioning process leading up to a stem cell transplant in the new year.
I would not say I am the most centered person you ever met, or the one who is always fully present and calm. That said, I may just be the best fair-weather friend to myself. When I feel good, feel whole, am asymptomatic and full of my usual energy, I am all that. An entire skin grows over the hardships, the distractions, the pain, the overwhelm, and I am fully back. In the past month, with no fanny pack to carry around, my full measure and treasure of vitality, and all kinds of events and opportunities to cherish, it’s as if leukemia has entirely faded, there seems no remnant of illness, and I am happily back in the saddle.
I like to think this is a kind of resilience, where my body, mind, and spirit come rolling back when given the right ingredients: exercise, good food, love and support, as well as some of the skills I list below. It also helps enormously to have a break from the effective and powerful, yet side-effect causing medications, the stress of being in the hospital, and the constant worry of receiving bad news! This is an essential and helpful vantage point to go into the process of conditioning and transplant. I know the situation will soon deteriorate for a bit due to treatment; hopefully I will recall my resilience muscles as I respond to treatment and realize an enduring cure.
While at MGH this week, I scanned in about 10 photo albums worth of my extensive family history, starting back with the great-grandparents and evolving my way up through early years of my own kids’ lives, before all our photography went digital. I think about the hardships our family endured, from immigration to not enough resources, to early deaths (including my beloved parents, Doris and Harry, and sister, Joan,) and how we bounce back, each challenge interspersed with happiness, a new love, a new baby, satisfying work, worldly adventure, connection with people we care about. Life is filled with all aspects along the continuum of challenges and joys.
During these weeks we have heard about friends and family members with all manner of illness, both physical and psychological. Everyone is going through something it seems, part of the human condition. May we all be blessed with the opportunities for healing, in all the ways we need it, and to grow and know our capacity for resilience. We can all polish up our skill sets that leads to further resilience. After my time in treatment ten years ago, I lectured on this topic to colleagues, really as a way to help side-step burnout in the physician community. Here is a short list of skills that help build resilience, I share them here because I need to constantly review the primer, too!
- An ability to manage your emotional state, and maintain optimism through a long-term effort. (Recall the Stockdale Paradox.)
- An ability to accept things you cannot change.
- Trying to own responsibility for yourself and your actions.
- Working to maintain focus when under pressure and to block out overwhelming details.
- Emphasizing organization and being proactive or asking for help when you need it.
- An ability to be present in your own body, even when you are uncomfortable, in pain, or a bit out of it.
- An ability to communicate effectively to have needs understood and met.
- Staying socially engaged.
- Working toward your best ability to be flexible and adaptable.
- Asking “how can I…” instead of “why did this..?”
We all have these abilities in some situations, the main thing is to recall and practice such abilities during stressful and challenging times and circumstances. I work to lean into this sage advice every day, especially on the harder days. I also give myself a break sometimes, I cannot and do not always do all of this, and sometimes I really just need and benefit from a good cry, hug, walk, or wallow!
During our winter holiday times, may we be showered with the right mixture of down-time, experiences with those we love, activities that bring joy and connection in all the right ways. Happy holidays from our home to yours with wishes for a more peaceful and just 2024.
Love and light from Fifty-Five Fruit Street,
AMY
#resilience #milestones #thriver #survivor #leukemia #Blintubamab