How a team effort got us through it
I was so angry at my ex-husband after I divorced him that I had to sit as far away as possible from him at baseball, softball, and hockey games. Yet he was the first person I called, crying, when I went to the Dana-Farber Cancer Institute and learned what they were going to do to me after I was diagnosed in 2003 with acute myeloid leukemia, an aggressive blood cancer, at a time when I had three school-aged children at home.
I would be hospitalized at the other end of the state for weeks at a time to receive chemotherapy, culminating in a stem-cell transplant that would replenish my bone marrow after chemotherapy killed the leukemia.
My ex-husband worked about an hour away from my house in western Massachusetts, but he moved in with us so our children, Ben, Joe, and Katie, could maintain their routines. I’m grateful for the stability he provided and for taking them to Red Sox games when they came to see me so that the trip to Boston was not associated only with illness. I can still see how their eyes lit up when I wore the Red Sox hat they gave me to cover my bald head: a good luck charm.
He also stayed the year after the transplant, when I was so weak I had trouble walking up even a small hill to go to my daughter’s soccer game, and my immune system was so fragile that for months, if I went inside anywhere other than my house, I had to do so briefly, wearing a mask and gloves.
My kids say they don’t remember being upset when I sat them down at the kitchen table and told them. I said matter-of-factly that I had a cancer of the blood, that it was curable, and that I would be treated at one of the best cancer hospitals. When Ben heard it was Dana-Farber, he said something like, “Oh, the Jimmy Fund, you’ll be fine,” making the connection with their beloved Red Sox’s official charity and the cancer center it supports. The boys returned to the den to watch the rest of the Red Sox game. Katie went upstairs to play with her Beanie Babies.
During the periods of recovery at home, my ex-husband moved back to his house, and my mother came up from New York to stay at the bed-and-breakfast across the street. They loved their beautiful grandma, who added another level of stability to their lives. (My father had died the year before.)
She did more than her share. One night, covered from head to toe in a rash of unknown origin, I got dizzy in the bathroom and fainted into her arms. Ben heard the commotion, ran to the door, and asked, “What should I do?” She said to call 911. An ambulance arrived and took my mother and me to the hospital. After getting through that infection and making other detours, which I describe in my New York Times essay, I got the transplant, which marked my new birthday. I went out into the world with an immune system even more fragile than a baby’s.
During the year of recovery after each transplant, my bathroom had to be cleaned every day, and not by me. It was just one of the ways in which our roles were reversed and they had to take care of me. You might wonder how I felt about giving up control after so many years of having it. But in the beginning of each year, I was more concerned about things such as getting past the nausea and eating the metallic-tasting food.
After the first transplant, I went back to the newspaper where I worked as a reporter, back to my crazy routine, from eating at the counter, to rushing home for the sitter or off to tennis practice or out for a run, to breaking up fights, making snacks at bedtime, and reading to the kids for as long as they would let me.
The new normal lasted almost four years. Then a shock. I relapsed, and relapsed again, going through the process four times, culminating with my last (and rare) transplant in 2008.
The transplant took, but I developed multiple life-threatening infections and kidney failure. My face was so bruised and my body so swollen that I didn’t want my children to see me. But they came. They stood by my bed looking down at me. I couldn’t speak. When they turned to leave, I mumbled, “Hold on,” through parched lips. They came back. I wanted to touch my daughter’s long curly brown hair, I don’t know why, but possibly from an impulse to be transported to a time when I had the energy to brush and braid it.
Joe was the furthest away, in college in Maine, and he drove five hours through a storm to see me one February night. Back in Maine, he was entering his dorm when I took a turn for the worse. He rushed back for a family meeting. My ex-husband brought Katie. He called Ben and told him, “Come quickly and bring your dark suit.”
I was in a coma, and my doctor said I might not make it through the night. But after a few days, I struggled to the surface, confused and unable to speak. I would stay in the hospital almost four months, much of it in bed and then while learning how to walk again.
Back home it took a long time to get to the point where I told Katie my energy level would sustain one thing a day while Ben was off on his own and Joe was doing other things. So on one day we might walk, with her encouraging me up a hill—“Come on, Mom, you can do it”—and on another day I might take her shopping and wait in the car with a book.
I lucked out to have Joe for four years after college: two in a job close to home and two in graduate school. They all picked me up figuratively, but he also did it literally.
One day after being sick to my stomach, I went out to walk our Labrador retriever. I felt like my feet were sticking to the ground. Then I couldn’t move. I fell over backwards, hitting my head on the pavement. The dog sat down next to me, looking on anxiously. People stopped. Someone called Joe, who took me to the emergency room. I was severely dehydrated and in need of fluids.
After a while, I began running again. Getting into my groove when running around a lake near my house, I didn’t notice a big root in front of me. I tripped and crashed onto the ground, hitting my head and the side of my face. Blood dripped from a cut near my eye. Again, someone called Joe. I earned an ambulance ride to the emergency room, where he met me. I had a concussion and needed stitches near my eye.
“You have to know your limits,” Joe said. “You’re 60, but after everything you’ve been through, you’re like a 70-year-old.”
Not long after, I convinced a friend to put my bike in the car so I could drive to a friend’s house about an hour and a half away to go for a bike ride. Did the concussion make me do it? I’ll never know, but I do know that trip could have been my last. Riding up a hill on a road with a narrow shoulder, I slowed down too much while switching gears. I lost my balance, fell off the bike and into the other lane, my (helmeted) head grazing the side of an incoming car. An ambulance came and rushed me to the nearest hospital.
My sister, who lived nearby, met my friend and me at the hospital. I needed stitches in the same place near my eye. I had also sprained my shoulder and bruised my knee. Joe arrived, again, and brought me home. My sister told my friend that at first she was angry, but then she realized that the drive to keep moving and which put me on that bike is the same drive that helped keep me alive.
The bike stayed in quarantine at my friend’s. “I beg you, please, please, don’t get back on that bike,” Joe said.
I wanted to ride, to feel the breeze on my face. I got a new bike, a step-through, easier to get on and off of. Last summer Katie and I rode our bikes on a Cape Cod trail. One day she wanted to swim, and I wanted to bike.
“Does Joe let you go alone?” she asked.
I said he did if I stayed on the bike path. Later, he confirmed.
I probably would have returned to work, but I got laid off. At first I was upset, but freelancing gave me more time to spend with them.
We sat on the couch watching The Daily Show and The Colbert Report, Seinfeld reruns and Jeopardy. I sat between them, one hand scratching each child’s back.
Katie and I ate ice cream and watched all of The Gilmore Girls, and Joe and I ate dinner in the den and watched all of Breaking Bad—diametrically opposed escapes into different worlds, one sweet and the other scary. Ben visited, and we walked around the lake. I was not a complainer, but I was a worrier, and though an editor and writer by profession, he excelled at dispensing philosophical insights and informal therapy. I didn’t want to turn my children into therapists, but the conversation seemed to go in natural ways appropriate to each child.
My ex had been seriously ill a few months before me and had also been in a coma, and, as the one around the most, Joe also went to his rescue as he did mine.
“I’m so glad my parents synchronized their comas,” Joe began saying after that scare. His sense of humor and his innate kindness helped to sustain him through all of this.
We had house rules. I promised Joe not to throw my shoes down the stairs without giving notice (one day I threw them down while I had an armful of laundry and Joe thought I was tumbling down); and I promised not to scream in the kitchen when my laptop gobbled up a story I was writing (because when I did that once before, Joe thought something had happened to me).
Through my blog about surviving leukemia, I had become friends with another blogger who had the same disease, went to the same cancer center, and was also a runner and a mother of three. We called each other doppelgangers. Then something went wrong, and she died. I stood at the den door and said to Joe, “We were doppelgangers.”
“You’re not doppelgangers anymore,” Joe said.
We went to Provincetown. I still could not walk a straight line, especially on cobblestones. I alternately held onto Ben’s or Joe’s arm. Acting my new age (maybe four), I wanted some independence. I dashed into a store.
Joe said, “Watch your mother.” Katie came in after me. I was a little annoyed but forgot about it when we started looking at all the cool stuff.
They watched me get chipped away at and watched me lie on the couch in pain, giving me tea and sympathy. I lost 12 teeth and a scoop of my tongue and a piece of my kidney, removed on Katie’s 21st birthday, which she celebrated with me in the hospital because it could have been worse and developed into full-blown kidney cancer had they not noticed it in a scan performed when I had double pneumonia.
“You’re a miracle,” a doctor said when they found it.
It didn’t feel that way at the time when I was facing surgery, but miracle is the word that my children use to remind me how lucky we have been.
The day Joe moved out, at the end of last summer when he was starting a job, I began to cry while watching him pack. I couldn’t stop. I knew I should say good-bye and leave the house, but I was stuck. I knew it was the way it was supposed to be, yet the finality of the last child really moving out got me in the gut—and the loss of my picker-upper and watcher and keeper. I hugged him tightly. He hugged me back.
We have celebrated seven “re-birthdays,” going out for a special dinner two years ago when I got to the five-year mark, the time post-transplant when you are officially cured. I blew out the number-five candle, and they sang happy birthday. The waitress looked like she thought it was curious because she didn’t see any five-year-old, but we didn’t mind because we were together, all of us healthy and happy.
They went through a lot, but they ended up with a mother whom they can now trust to be on her own, who runs like she used to (without falling down), and who welcomes them home and travels with them and visits them in the places where they are doing wonderful things.
No longer child-mom, I’m now back to being Mom and feeling grateful for all the teamwork that got me here.
Ronni Gordon worked for many years as an arts and features writer at a regional daily in western Massachusetts. As a freelancer, she has been published in the New York Times, Marie Claire, espnW.com, Yankee magazine, Forbes, and many others. She writes about surviving leukemia at runnerwrites.blogspot.com. Learn more about her on her website, ronnigordon.com, and follow her on Twitter at @ronni_gordon. She is the proud Solo Mom of three grown children.
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