What did “Treat to Cure” mean? I already knew the treatments would be brutal – but just how bad it would be was a bit of a bombshell. Usually someone who is diagnosed with ALL (Acute Lymphoblastic Leukemia) is admitted to the hospital immediately – literally. They leave the doctor’s office and go straight to a hospital room because it’s an aggressive cancer. But mine was different. After numerous tests including biopsies, a PET scan, and lab tests, the doctors were convinced that, while I had ALL, it was only in my leg bones. It was confounding but it gave them time to develop the treatment plan.
Meanwhile what felt like a pulled muscle in my legs started to feel painful – progressing to an excruciating throb. I was taking oxycontin and long-acting morphine to blunt the pain. I now understand the kind of pain that could spiral someone into addiction. One of the few positives of going through something like this, is the deepening of empathy.
The doctors all agreed that the standard treatment plan was in order. They would start at the end of April (2021) with chemo at intervals throughout the summer. UAB would admit me to the oncology floor for each chemo treatment – no outpatient chemo. I could be in the hospital for 4 to 6 weeks during the first treatment and then 4 to 5 days for subsequent treatments. I’d stop chemo once they found a stem cell transplant donor match - which was the real cure. Chemo's job was to get me into remission, but that wouldn't last long without new stem cells.
One night before my admission was particularly long and agonizing. I had gotten to where I tossed and turned trying to get comfortable and kept Mark awake. I had taken up bedtime residence in the study where we kept the couch bed open. As dawn got closer, I finally figured out that lying on my stomach seemed to alleviate the pain somewhat. I started crying. I cried from exhaustion, fear, loss, and anger at my self-pity. Mark came in and sat on the end of the bed. He began rubbing my feet. I fell asleep. When I woke up, he was still rubbing my feet – it was an hour later.
My admission to the hospital couldn’t come fast enough. I was eager to start treatment. I needed to feel like I was doing something to kill these tumors in my legs. We drove to the UAB Women & Infants Center on the day of my admission. I know that sounds weird but if you think about it, once you start chemo and lose your hair, you kind of look like an infant again. Oncology and the bone marrow transplant unit are on the 5th floor – far away from the newborns and expecting moms. But the location was comforting to me. I had been working at UAB for a long time. I had done clinical work in the hospital right across the street at Spain Rehab years ago, My office in Nutrition Sciences was just a few blocks up the street and my condo is just a couple of miles down the street. My room had three huge windows with an expansive view of downtown Birmingham. I could see the Alabama Theatre marquis and the edge of Railroad Park. Many of the nurses had taken one of my nutrition courses and came by to visit. All this familiarity was a source of comfort.
That night the pain escalated, and I couldn’t sleep. I called for the nurse, and she called the doctor on call. I needed pain meds but he refused – saying that none of the meds would work for bone pain. I wanted to scream. The nurses were frustrated and so was I. They kept bringing me warm blankets for my legs. They were so attentive and sweet but warm blankets are not an adequate substitute for some powerful pain killers. I wanted my mother. Somehow, I felt that if she were there, everything would be okay. Then I realized that if my mother had been there, we would have had a full-on Shirley MacLaine reenactment from Terms of Endearment when she marches down to the nurses’ station screaming: “Give my daughter the shot!”
The next day, after a sleepless night, I started chemo. I was elated. I finally felt like we were moving forward. The chemo kicked in and I could feel the pain slipping away. The tumors were shrinking. This would be my home for many weeks. How would I deal with boredom? Re-runs of The Golden Girls, HGTV, my angel nurses, and messages and cards of love and support from my family and friends got me through that first round. But there was so much more to come.
Beth Kitchin PhD RDN