Ronni Gordon
Baby steps and beyond
Ronni Gordon enjoys time outside her Hadley (Mass.) home with her labrador retriever, Maddie. (Mieke Zuiderweg photo)
On Sept. 18, 2005, two years after my stem cell transplant, friends asked if I wanted to celebrate with champagne.
"Let's just go for a walk and have coffee," I said.
I knew that two years was a big benchmark in the treatment of Acute Myeloid Leukemia, marking the date after which AML is highly unlikely to return. But I felt superstitious. I didn't want to attract too much attention, as if a joyful celebration might signal over-confidence inviting a whack with the back of a heavenly hand.
Nearly two years after that, when the leukemia did return last August, I wondered what I might have done to bring this on. Had I let my guard down too much? Had I gotten too big for my britches by writing newspaper pieces about my treatment and recovery? Had I, as one friend suggested, exercised too much and rested too little? Was my immune system weakened by the death of my mother, from lung cancer, nine months before my relapse? And when I first got the disease in 2003, was it in any way a reaction to my father's death from a brain tumor about a year before that?
Daniel J. DeAngelo, my doctor at Dana-Farber, said it was none of those things. Nothing I did, or didn't do, had made it happen.
When it first happened, in March 2003, I knew something was wrong, but I had no idea how serious it was. I had felt sluggish during my runs for about a month, yet I didn't want to give up the sport that brought me so much calm and clarity. I didn't run long distances, but I was consistent, running some 20 miles a week near my home in South Hadley, Mass.
I had to pay attention while running the St. Patrick's Road Race in nearby Holyoke. Though I usually enjoyed this festive race held on the weekend of the city's big St. Patrick's Day Parade, I could hardly catch my breath. It took me some 10 minutes longer than usual to finish the hilly 10-kilometer race, and at the end, I felt sick and dizzy.
A busy 48-year-old single mother of three who worked full time as a reporter at a daily newspaper, I thought I was just run down. I went to see my local doctor a few days later, and the blood work that he did came back abnormal. He scheduled a bone marrow biopsy for the morning, and several days later, I learned that I had AML. Running at least led to the diagnosis of the fast-moving cancer before I had gotten dangerously weak.
The "Who, me?" response kicked in. I exercised daily; when I didn't run, I played tennis, biked or lifted weights. I ate well and got plenty of sleep. I was shocked and sickened with fear.
This past summer, Gordon was back to playing tennis at the Longmeadow High courts. (courtesy of Ronni Gordon)
The next few days were a blur. I had intended to get treated nearby at Springfield's Baystate Medical Center, but my friends and family said I'd be crazy if I didn't go to Dana-Farber, just an hour and a half hour east of me in Boston. I knew they were right, and I never looked back.
Dr. DeAngelo said I would have three rounds of chemotherapy, spread over a total of about six months, or five rounds over a longer amount of time. I ended up with the shorter course, which culminated with a super-strong chemotherapy followed by an autologous bone marrow transplant, using my own stem cells collected after I went into remission. These new cells would repopulate my bone marrow after the intense chemotherapy depleted it.
On April 9, I checked into Brigham and Women's, Dana-Farber's partner hospital, for my induction. My mother moved from New York into my sister's house in Newton Highlands — just a few miles from the hospital — so she could be with me daily along with my sister.
The rollercoaster ride began. I got seven days of chemo, followed by about a month in the hospital while my blood counts recovered. My body reacted with fevers — one as high as 105 — rashes, rigors, diarrhea, and mouth sores so severe that on some days I could barely eat. Still, on most days I pulled my IV pole along "the Pike," a long hospital corridor where turnpike-like signs indicate medical offices. In my room, I also rode a stationary bike or did exercises on my bed, trying to stay in shape for my next race.
I returned home to recover, then went back for my consolidation round of chemo. Back home again, I fainted in my bathroom, falling into my mother's arms. Later that night, I rode back to Brigham and Women's in an ambulance, through a rainstorm. During this stay I developed a fungal pneumonia. I went on an anti-fungal drug to keep it in check, but lung surgery was the only way to get rid of it.
My platelets were too low to stem bleeding during surgery, and when a transfusion failed to boost them, I went home yet again so my body could make their own. That brought me to the first weekend of August, when top teams in the United States Tennis Association league compete regionally in district championships. My team was scheduled to play in Portland, Maine. I went along just to watch, but I felt strong enough to play. For an incredible couple of hours, despite the scarf that covered my bald head, I felt like an athlete again. I was even more exhilarated when my partner and I won our doubles match.
Then it was back to the hospital for lung surgery, home yet again to recover, and back again one more time for the last round of chemotherapy and the transplant.
Back home after this latest procedure, I crashed. I was exhausted, weak, and scared to be away from the doctors and the caring nurses who became my friends. But although barely able to walk up a small hill at first, I built my strength back. First I walked, and then I ran. In November 2004, I ran my first post-cancer race.
Exercise helped me learn to take things one step at a time. So did watching the Red Sox rise from their dismal defeat of 2003 at the hands of the Yankees to beating New York and winning the World Series the next year. I took my own small steps in the same year they made their big leaps; when they won and put all that heartache behind them in '04, their victory was my inspiration.
Life slowly returned to normal. I remained anxious about relapse, but the intensity of the fear gradually decreased. So in the spring of 2007, when my white blood count fell, I was worried but not consumed. I felt great. One gorgeous day a friend and I went on a 35-mile bike ride on which I tested my special new clip-on biking shoes. I fell off a couple of times, but I just laughed. I felt so strong I could have kept going.
I also played tennis several times a week. My team again made it to the Districts — our shorthand for the New England District Championships — where my partner and I won a doubles match. It felt like a long time ago that I had played through leukemia. Little did I know that I had it again.
Soon enough, I found out. About a month after that iffy blood test earlier in the spring, my white blood count had risen again — a good sign. But this past August, when I went to the clinic for a re-test just a few days after the Districts, the number was suspiciously low again. A bone marrow biopsy confirmed what the numbers suggested: the cancer had returned.
"Leukemia is curable. We'll get you back on your feet," Dr. DeAngelo said. He said I would have the same chemo induction as before, but this time I would have an allogenic transplant, using donated cells to provide an anti-leukemia effect, called graft-versus-leukemia. That is, provided they could find a donor.
I was angry and stunned, but my doctor's words planted a seed of hope. And I reminded myself that I am lucky to get this disease now when it's treatable rather than in the past when it surely would have been a death sentence.
On June 8, 2003, shortly after starting treatment, Gordon celebrated the graduation of her son, Ben Doody, from South Hadley High School. (courtesy of Ronni Gordon)
So on Aug. 10, 2007, I checked into the hospital for what felt like the umpteenth time. The chemotherapy put me into remission, as it had the first time, and I returned home for about four weeks. I was worried that they would not find a donor, but they did, so back I went on Oct. 9 for more chemo and the transplant. Just before midnight on Oct. 15, the cells of some kind young man entered my bloodstream.
My new doctor, bone marrow transplant specialist Edwin P. Alyea, had explained that these cells will be my insurance against the leukemia coming back; they will recognize invading cells as foreigners and attack them in a way my own cells were unable to. My social worker, Mary Lou Hackett, reinforced the message of both doctors. Plus, she's such a calming presence that just seeing her makes me feel better.
While my new blood takes care of my body, my mind and spirit work at catching up. Sometimes I'm not sure I will ever be free of fear, but when my anxiety starts sparking morbid scenarios, I remind myself that things are just like before: I have to take it one step at a time. Occasionally when I'm walking, I even say it aloud. Step, step, step. You can do it. Step, step, step. Yes, you can. Another Red Sox World Series victory just after my transplant last October inspired me when I came home this time.
Sometimes I feel that my late mother and father are both here, sending me signs just when I need them most. But it's harder now. When I come back from a nighttime walk with my puppy and see the blinking light on the answering machine, it is not my mother asking, "Where were you?" I will not be able to tell her that I walked a mile each way, briskly, and that it felt good. She is not here to spray disinfectant on the phones and doorknobs, or to cook me stewed fruit when, due to post-transplant restrictions, I am not allowed to eat fresh fruit. She is not here to make me laugh, to cheer me on and hold my hand.
I will have to do it for my children.
I will have to do it for myself.
I will have to do it because that's what I do. I think about how much I want to run again, the wind on my face, and so I take my little baby steps and try hard not to look too far ahead.
Ronni Gordon is on leave from her job as a reporter at The Republican in Springfield. She is working on a book about her cancer experience.
