by Martha Laperle
When my son Ryan ran the Boston Marathon this year, I watched him with a special level of pride. Not only had he completed his first-ever marathon in four hours, but he was running, in large part, because of me.
Just over a year earlier, at the age of 57, I had been diagnosed with an aggressive form of acute myeloid leukemia (AML), a diagnosis that turned my life upside down and led to weeks of chemotherapy and a stem cell transplant at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC). Ryan was running to raise funds for the Leukemia & Lymphoma Society and had received nearly $11,000 in pledges.
Barely a minute after Ryan crossed the finish line, the area shook with explosions. Ryan’s girlfriend, a friend and I had just walked past the location where one of the two bombs went off. We immediately ran toward Copley Square. For several terrifying minutes, we didn’t know whether Ryan had been hurt, but we soon received a text from him. When we met up near the medical tent, we were all in tears.
A Trying Year
The Marathon bombing was the second shock in what had been a trying year and a half for all of us – myself, my family, our friends and neighbors – one that would test us in ways we’d never expected, but would ultimately bring us closer. The first shock came in March 2012, when I e-mailed my doctor about some problems I’d been having for a couple of days – pain between my shoulder blades and difficulty swallowing. I was on a field trip in Boston with students from the middle school where I’m a nurse when I received an e-mail to call my physician. Her message: go to an emergency room. The doctor ordered a chest X-ray and blood tests.
My entry to the Exeter (N.H.) Hospital emergency department was the start of a two-month period in which I never left a hospital. An hour after a bone marrow test showed that I had leukemia, I was in an ambulance bound for Brigham and Women’s, where I had more tests and, in a few days, a diagnosis of AML.
The diagnosis seemed to come out of the blue: I’d been a very healthy person my entire life. The disease and the experience of treatment would have a life-changing effect.
Chemotherapy started within a week – an eight-day course of treatment delivered round-the-clock. The regimen took a physical toll: my skin and hands became red and swollen, I lost my appetite, I was sick to my stomach and food had a metallic taste, my hair fell out. My oncologist, Dr. David Steensma, and the nurses at DF/BWCC were amazing; they helped me through every phase of treatment, offering encouragement and letting me know what to expect.
I also was fortunate to have a great support network. My husband, three grown sons, sisters, brother, and friends all spent time with me during my hospital stay. Every night, at least one of them stayed over. People offered to do whatever they could to help and I received more than 400 cards while in the hospital.
After the eight-day course of chemotherapy, a bone marrow biopsy showed that some leukemia remained. I felt devastated, but Dr. Steensma and the nurses explained that my situation wasn’t unusual. I went through a seven-day course, which again made me very sick. My life had changed so quickly and I just focused on getting through each day.
One of the most difficult aspects of being a patient is the feeling that you’ve lost control of your life; you’re dependent on others to take care of you. To give myself a routine to follow, I made sure to shower every day, difficult as it was to move, and walked around the hospital unit as much as I could.
The sense of isolation was also a challenge. It felt strange not being part of everyday society, especially at the start of the school year, when everyone but me was going back to work.
Turning to Transplant
At about this time, the doctors started telling me about a stem cell transplant. My transplant physician, Dr. John Koreth, explained that it would give me the best chance of recovery. My brother and two sisters were tested to see if the stem cells in their bone marrow were a match for mine and could be used for the transplant. It turned out that my younger sister, Amy’s, were.
Seven weeks after I’d entered the hospital, with the leukemia in remission and the side effects of treatment over, I went home to rest up and gain strength for the transplant.
Five weeks later I returned to DF/BWCC for the transplant. A small amount of my sister’s bone marrow was “harvested” – removed from her hip area – on June 28. I received chemotherapy for five days, then had her bone marrow infused into me intravenously. Two days later, I was released from the hospital.
The people who cared for me at the hospital – including my transplant nurse, Pat Byrne, my clinical coordinator, Mary Lou Hackett, my social worker, and Melissa Cochran, my transplant nurse practitioner – were awesome. So was my sister, Amy.
The Road to Recovery
In donating the stem cells from her bone marrow, she was essentially giving me a new immune system. Because it takes several months for the new marrow to take root, I was potentially easy prey to infections when I returned home. I had to wear a mask and gloves when I went outside and couldn’t be near anyone who was sick. I couldn’t eat fresh fruit or vegetables, only cooked foods. I returned to DF/BWCC three times a week for follow-up tests to make sure I was recovering properly – visits which became less frequent as the weeks and months passed.
A year after transplant, I no longer had to wear the mask and gloves, I could go out to eat. Though I tired easily, I continued to walk as much as I could, two to three miles a day. I knew that I needed to stay strong to get better. So much of recovery is psychological: you have to want to get well for it to happen.
I’m now back at work three days a week, and although I still get fatigued faster than I used to, I’m continuing to gain strength. I’ve had 11 immunizations so far to help my new immune system get up to speed.
Learning I had a life-threatening disease and going through a transplant was the most difficult experience of my life. But my family, friends, co-workers, and those who treated me have kept me determined to beat this disease. I’m exercising more than I ever used to. And I have a new reason to stay healthy: my two-year-old granddaughter.