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Complex Case Study: The Patient's Perspective

  • Advances Doctors Issue 3, Spring 2014
  • Advances in Hematologic Malignancies Issue 3, Spring 2014

    Read about this patient's case in the words of her clinical team. 

    supportive handsWhile running the Saint Patrick's Road Race on March 22, 2003, near my home in western Massachusetts, I could hardly catch my breath. I finished the hilly 10-K course anyway, driven by my belief that if you don't finish, you don't deserve the race T-shirt. I nearly fainted at the end, and it had taken a little more than an hour — at least 10 minutes longer than I had ever required to run that distance.

    I thought I was just run down from being a busy mother of three, so I was shocked to learn that I had leukemia.

    Hospitalized some two weeks later for my first round of chemotherapy, I asked a nurse where patients exercised. When she said "the Pike," I thought she meant the Massachusetts Turnpike, but she meant the connecting corridor downstairs at Brigham and Women's Hospital, which is nicknamed "the Pike."

    I put on my running shoes and walked along the Pike, sometimes pulling an intravenous pole. Putting one foot in front of the other distracted me from fear of death. Whenever I couldn't leave the hospital ward to go down to the Pike, I walked back and forth along the nurses' station.

    My father always said, ''You have to keep moving.'' A year before his death at 87, he could barely walk, but he hit tennis balls with my sister and me. Afterwards, he said, ''Now I feel alive.'' My mother distracted herself from worry by planting her garden in her head. I learned from both of them.

    Sometimes I was too sick to do anything but curl up under the quilt I had brought from home. It was the worst during the long hospitalization after my fourth bone marrow transplant. When I came out of my coma, I was confused and unable to speak. My legs were swollen like tree trunks, and it took two nurses just to turn me.

    My first time up after waking up, I needed oxygen to sit on the edge of the bed. Using a walker, it took all of my energy just to inch halfway along the nurses' station. I couldn't wait to turn back, yet after that I asked a nurse or my sister to walk with me as often as possible. When I finally made it to the end of the nurses' station, it was like crossing the finish line of a race.

    I often looked at the can of tennis balls that I kept on my hospital room windowsill and pictured myself playing. I thought of walking my dog around the lake near my home and of sitting on the couch watching TV with my children.

    When my sister had driven me to the hospital on a snowy winter night in 2008 after I learned of my second relapse, I huddled in my seat and repeatedly said, "I'm never going to see my grandchildren."

    But Unit 6A oncology nurse Myra Muir, RN, set me straight. I asked her how I could possibly go through it again.

    "You can have your pity party for a day, and then you'll put on your boxing gloves," she said.

    Many people reassured me: Edwin Alyea, MD, with his calm demeanor and subtle sense of humor; Daniel DeAngelo, MD, PhD,with his infectious laugh; and transplant social worker Mary Lou Hackett, LICSW, who would tell me about patients who persevered in similar circumstances.

    Vytas Durickas, RN, an oncology nurse who sadly passed away in 2010, cared for me from the beginning. One night when I was rushed by ambulance to the hospital after fainting into my mother's arms, he waited for me past the end of his shift.

    Vytas called me "Nervous Nellie" because I worried all the time.

    "They'll figure it out," he'd say.

    And they did.