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Co-Chair and patient
October 20, 2021
At the time of my acute myeloid leukemia diagnosis, I had myelodysplastic syndromes and was transfusion dependent. Treatment options had failed. Doctors told me I was dying and advised me to settle my affairs. No doctor recommended transplant because I had survived acute lymphoblastic leukemia, a bone marrow transplant 8 years before, and I was 66 years old. Acute myeloid leukemia arrived with the blessing of increased choices.
When my myelodysplastic syndromes morphed into acute myeloid leukemia, my bone marrow biopsy showed 40% blasts, which are immature blood cells normally found at low numbers (<5%) in the bone marrow. Salvage chemotherapy became an action item. A doctor shared the news on a Friday afternoon and told me to report to the regional hospital nearest my home on Monday morning to begin treatment. I was advised to stay close to home because my chances for survival were not good, and I could be near family. But the closest regional hospital was 100 miles away. My husband had dementia and could not travel. My six adopted children were in high school and could not easily come to visit. 100 miles seemed as far-fetched as 2,000 considering our logistics and family circumstance, so I chose to go to a nationally recognized transplant center in the Pacific Northwest where my first bone marrow transplant was accomplished; the center where bone marrow transplant was pioneered, and that won a Nobel Prize for Medicine.
My husband Joe no longer knew my name because of his cognitive decline, but I knew him. Without a doubt, Joe always wanted the best for me and would have advocated for me to seek the best practices and care. A neighbor committed to working each day with our family and attending to Joe’s personal needs while I left home and family for treatment at the medical center that had saved my life during my acute lymphoblastic leukemia challenge, 8 years before.
It was midwinter. The island I lived on was surrounded by a frozen Lake Michigan. The ferry line had an ice breaker boat requiring reservations during winter. The day I needed to leave the island, all the reservations were taken. I walked on the ferry with my suitcase. Bundled in coat, mittens, muffler, snow boots, and suit, I watched and listened as the ice gave way and broke, groaning and popping as the ferry’s hull lurched and chugged to make open passage across a stretch of water known as Death’s Door. In places, the captain coaxed the boat. Stuck to a crawl, he switched the engines into reverse, then reeved with full power, forward and through the ice sheet.
When the ferry landed on the mainland, I found my off-island car, a 1990 Volvo station wagon, parked in the dock’s long-term space, covered in snow with a dead battery. The ferry captain used a battery pack to jump start my vehicle. He dug my car out from the snowbank and got it running. Once I was behind the wheel and underway, I decided to stop at the closest hospital which was 50 miles from the dock. I had a standing order for blood draws at the hospital due to my transfusion dependence and records of my blood counts consistently plummeting. I took the poke from a provider who knew me all too well with my history and frequent visits. I didn’t wait for the results. She said she would call me as I drove on toward the airport. She called my cell phone within half an hour, reporting that my blood test showed zero platelets; a normal platelet count is between 150–450,000. Less than this causes a condition called thrombocytopenia where you bruise easily and experience frequent bleeding (e.g., from nose, gums or digestive system). Enroute to the airport, I stopped at the bigger hospital in the next bigger city where staff knew me too. I knew the drill. A nurse transfused two bags of platelets into me. When she pulled the intravenous (IV), I took off in my car to the airport for what seemed to me to be my best chance for life.
Carole, my best friend, met me at the Milwaukee airport to take my car for the time I would be gone, a better plan than leaving my vehicle in long-term parking for the months it could take to accomplish remission, determine next steps, or arrive at my death.
My friend carried my bag from the parking garage as far as she was allowed until we reached the boundary of airport security and said goodbye without knowing if I would return.
On Monday, I walked into the clinic, 2,000 miles from home. The acute myeloid leukemia doctor met with me. When I came into her office, she re-ran my labs because she considered that the low markers on my lab results could be a mistake. But my labs revealed the truth. My body had adjusted, accommodating low counts for so many months that I was still mobile and remained standing.
Following exam, evaluation, and conversation, the doctor voiced her conclusion. She did not speak to me about numbers, percentages, or odds. In words that touched my soul, she said: “This is not a Don Quixote venture”. She offered me a clinical trial called ‘G-Clam Long Arm’. I agreed and signed my name to the consent form. The doctor told me to report to the hospital the next day.
When I left her office, I started walking to the water’s edge of Puget Sound. Along the way, I had to walk over a viaduct which spanned a freeway. Vehicles streamed and buzzed along the highway beneath the metal bridge. In a brief moment, as quick as a bird darting across the sky and disappearing, I glimpsed that I could just jump off this viaduct and quit. I dismissed the thought without hesitation and vowed to report the incident to a social worker when I was admitted to the hospital the next day. I was not afraid of my thought, just curious to note what flitted across my radar and why, even for a brief instant. From my experience with acute lymphoblastic leukemia, myelodysplastic syndromes, and acute myeloid leukemia, my best position is as a member of a team, with a responsibility of self-care, accessing every supportive care service and resource available. Transparency is crucial. I was not afraid of my thought, just curious.
I continued walking to the water’s edge, pocketed a stone from the beach with intention to place it on the windowsill of my hospital room, bathed my feet into the salt water and asked God’s help for the journey ahead. On my walk back to housing, I stopped at a sporting goods store and bought a pair of new tennis shoes and planned to walk the hospital corridor on my appointed floor.
When I checked into my hospital room, I re-arranged the furniture. I refused to stare at the wall hung clock and television. I unlocked the wheels on the hospital bed and pushed until it faced the window and oriented my view outside and beyond. I used prayer ribbons sent to me by a friend and covered the medical hoist over my bed with streamers of bright colored fabric, dangling and free. I asked the music therapist to bring a keyboard into the room and promised to keep the volume down. The art therapist arrived. We made a tree out of construction paper and taped it on the window wall so that I could bring the outside in. I wrote poetry, signed documents of instructions for medical decisions, updated my advance directive with instructions for the disposition of my body when I died. And, I participated in my care as advocate and team member with every provider who walked in my door. I made a point to stand up out of my hospital bed whenever anyone entered my room, and I was able to demonstrate myself as more than a bedbound patient. In every way I could muster, I made myself present rather than submitting to being a lab rat, Guinea pig, or data point on a chart. I walked every day, even when pushing my pole hung with infusion bags and tubes. Around and around the ward I walked until I reached a mile of steps and received a brightly colored paper footprint from the nurse’s station to tape on my door. During my hospital stay, I covered the door of my room in a labyrinth pattern of paper footprints.
When my hair shed on the pillow, I knelt by the side of my bed with a scissors and cut it off, placing my hair in a sheet of tissue paper, rolling the paper, and tying it with a ribbon, making like a wrapped quill of hair with a ribbon shoulder strap that I could hang and display as testimony of my journey.
I kept busy. One of my sons was in jail, back home; I wrote to the judge asking for mercy. I met with the chaplain. Sent letters home and always took a phone call from a family member even when a provider was in the room changing the dressing on my central line, dispensing meds, or consulting. I practiced being the best remote mom I could be even when my urine was blue, and then green from the drugs I was taking, and steroid drops were dripped into my eyes for protection.
One day, the medical team came into my room during morning rounds and said we had reached remission. Zero counts. They asked if I would consider another clinical trial in which only rats, dogs, and three men had participated. I would be the first woman. I said “Yes” to a radioactive isotope clinical trial designed to reduce my exposure to multiple courses of full body radiation to prepare my body for a stem cell transplant.
I said “Yes” to a psychological clinical trial gratitude study. I said “Yes” to a clinical trial gut bug study. While recuperating in medical housing for 100 days following transplant, I said “Yes” to an email that arrived in my inbox, offering a 50% scholarship for a Doctor of Ministry program at the seminary where I received my Master of Divinity degree in 1995. When winter term began, in 2019, I had my books, dorm, and bags packed for the first day of school. Instead, I was in the hospital with heart failure. Medications and treatments from over a decade enduring acute lymphoblastic leukemia, myelodysplastic syndromes, acute myeloid leukemia, and two transplants caught up with my heart and took it down to 22% ejection fractions. The ejection fraction is the amount of blood leaving the heart each time it contracts, which should normally be around 50–75%. I begged the doctors to let me out of the hospital so I could get to my first day of class. Doctors said “No”. I came to terms with missing the program, convinced that I would have to stay alive for 2 more years to be present when the program courses for my study track were offered again in 2021. The seminary agreed to hold my scholarship and extend my acceptance until the next round of course work. And, that is where I am now. 2021, Year 1 of my Doctor of Ministry program in full swing, with me participating digitally.
I have learned many life lessons in my experience to know acute myeloid leukemia. A few days ago, I was overwhelmed and seemingly immobilized. Treatment options for my chronic, severe, and advancing graft-versus-host disease (GvHD) were stalled. Doctors were not agreeing with how to proceed in managing my increasingly complicated case. I had met with a financial planner to organize my estate. My son was in jail again. Work was seeming to get the better of me. My limitations became more apparent, and I had an intense sadness because Joe had died and my companion dog had passed also. I wanted to talk to someone but knew that my friends were at work. Then, when I needed it most, my telephone rang. The caller was my counselor from Be The Match. I had neglected to write down our phone appointment time for this month’s session, but it was now. On the phone, I poured out all the feelings and happenings that were pressing in on me, until I noticed that what I was naming was ‘fear’. Once I named it, fear’s power was released. I could hear my voice change from panic to calm. I felt centered and sure. Know AML is like that too. When I lean in, explore, and engage, when I work within a global outreach to ‘Know’ AML, I stand on solid foundation infused with hope upon which I find my way and the courage to take the next step.