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How does it feel when doctors tell you there's nothing more they can do for you -- that your cancer is too aggressive and you're completely out of options? I never thought I'd have to describe this, but let me try. It's like when a big ocean wave knocks you down and you can't get up because another wave hits, and another and another. You panic and fight for air as you're pulled under, and you begin to realize that this could be it: You're not going to make it.
My medical nightmare began in late summer 2009. I was looking forward to my sixth year of teaching at a middle school near Boston. It was nice to have a part-time job that supplemented my husband Adam's income as a sports psychology consultant while we raised our 2-year-old daughter, Grace. I asked my doctor to check a dry, painful cough that had been bugging me for a few weeks. If I had an infection, I wanted to take care of it before school started.
She took an X-ray to check for pneumonia and noticed something shadowy lurking in the image. "Maybe you moved or coughed while we took it," she said. Adam and I were heading up to Maine to visit my dad and stepmom for Labor Day (my parents divorced when I was 10). So my doctor gave me a prescription for antibiotics and had me book a CT scan for when I returned, just to be safe. I wasn't nervous. "I feel fine," I thought. "It's just a cough." That golden holiday weekend, riding bikes, barbecuing, surrounded by family, was the last time life would feel normal.
When we got back from Maine I went in for my CT scan and they told me I'd get the results in a couple of days. But just an hour and a half later, my doctor's number popped up on my cell. My stomach dropped and I thought, "This can't be good." I could tell the doctor was trying really hard to sound upbeat. "You have a mass in your chest," she said. "We need to do more tests -- immediately." She didn't say the C word, but my mind swirled as I tried to keep it together. Grace was taking a nap. Adam was teaching a class and I knew his phone would be turned off for the next four hours. I wanted my dad. He and my stepmom are teachers, too, and they were on an overnight whitewater-rafting trip in middle-of-nowhere Maine with a bunch of high school students. The cell service was spotty, but I did reach him. I could barely speak but he was calm and reassuring. "We'll figure this out and just take it one step at a time," he said.
After six weeks and two grueling chest biopsies, I finally got a diagnosis: I had non-Hodgkin lymphoma, a type of cancer that creates tumors from your immune system's white blood cells. But mine was not just the plain old vanilla kind. Mine was "special." I had primary mediastinal B-cell lymphoma, which often strikes young women and produces tumors in the chest (thus the nagging cough). By the time I met with an oncologist, I could feel the bulge just to the right of my sternum. Trying to find comfort in humor, Adam and I joked that it was my third boob. But it felt more like an alien was taking over my body and erupting from the inside.
My friends and family were really concerned, and many of them offered to fly in, come help, provide support, anything. My sisters, Susannah and Amanda, were totally there for me (even though Amanda had just gotten married). But I'm pretty stubborn and independent, and it took me a long time to be able to accept help.
Besides, I wasn't that worried. Yet. My oncologist at Harvard's Dana-Farber Cancer Institute was surprisingly upbeat. "Chemo cures 95 percent of cases like yours within 10 months," he said. "Start planning your next vacation." He told me I'd definitely lose my hair, but that didn't bother me very much. I was like, "Well, hair grows. If this is what I have to do to get better, that's fine."
Chemo was awful, though. I felt sick and exhausted -- like take-a-nap-for-20-hours-and-still-be-tired tired. Even worse, after two rounds of chemo over six weeks, the tumor was still so painful that coughing made me cry. A scan showed that the treatment wasn't working. The tumor was still growing. I was astonished, because this was supposed to be a no-brainer cure. I was also confused and scared, but the oncologist said I still had options.
For the next chemo we tried, I had to stay in the hospital three days for each dose. My family all figured out their own ways of helping. Adam was usually with me or at home trying to keep Grace's routine as normal as possible. I don't know how he got any work done. My mom, who lives in Maine, would send me encouraging emails and cards, and my dad would call me just about every single day when he wasn't visiting. My sister Susannah, who's a runner, put her energy to work by raising money to run a marathon for the Leukemia & Lymphoma Society's Team In Training. She wound up being the top fund-raiser from Massachusetts.
We had people in and out of our house all the time. The first thing they always did was wash the dishes and put things away -- often in the wrong place. Adam and I laughed about how every time we went to get a dish or a glass, it was never where we thought it would be.
After two rounds of the new chemo, the oncologist and a nurse sat with Adam and me to go over test results. The doctor looked grave. I'd been knocked down twice by bad news already, so you'd think a third time wouldn't be a shock. But it was. "This chemo has had no effect," he said. The words hit me physically in the gut and I found it hard to breathe. My mind grasped desperately for outs, hoping the oncologist would suddenly announce, "Sorry, we've been looking at the wrong chart and it's all a mistake." But I had to know the answer to the big question. If my options were really failing and there was no other treatment to try, how much time did I have left? The oncologist paused uncomfortably. "I'm not giving up," he said. "But we estimate you have about three months."
That's when I lost it. The fear and anxiety that I'd tamped down for months boiled to the surface in one overwhelming moment. I felt like the undertow had grabbed me and was pulling me out to sea. I rushed out of the room. Adam and the nurse followed me to the waiting room and caught me as I crumbled to the floor, sobbing.Living in Fear and Denial
What's it like to know you're going to die? It's surreal and unbelievable. The enormity and finality of death take a while to process. I'm sure I was in denial. So was Adam. I couldn't face the big picture, so instead I obsessed about small, tangible realities I could still influence. There were things that needed to be planned -- just in case. I had conversations with different family members where I said, "Look, I know you don't want to hear this, but I need to say it out loud. I need to know that somebody understands my hopes and wishes." I asked Susannah to be sure to buy Grace her first bra. It was a symbol for all the things in her life that I wasn't going to be there for; I wanted things done the way I would've done them. I made Adam promise that I'd die at home if possible. And he swore he'd never remarry. I told him he was sweet but that was crazy.
Still, I wasn't ready to give up, and neither were my doctors. There are only so many chemo options, and we'd already been through the standard ones. That meant we had to move toward new, experimental treatments that might -- just maybe -- offer a glimmer of hope.
My father-in-law, Bob, made about 50 phone calls to doctors around the country, getting leads and recommendations. Eventually he was able to reach experts at the National Institutes of Health, in Bethesda, Maryland, where researchers were testing a new approach to chemo. We were so fortunate that my oncologist was willing to speak with the doctors at the NIH and help us get into the clinical trial. We took Grace to stay with Adam's parents in Connecticut, and Adam and I made two trips to Bethesda, where I wore a small pump that dispensed drugs continuously. I'm pretty tough, but I was losing weight and getting weaker. Chemo affects your taste buds and all of the other meds affect your hunger. For a long time I was on the Popsicle and Gatorade diet. My bald head was bad enough, but this time I also lost my eyebrows, my eyelashes and even my nose hair. Hey, you actually need nose hair. Without it, your nose just runs like crazy.
On a third trip to Bethesda, the doctors' long faces reflected my worst fear. The tumor in my chest had stopped growing, but another had appeared on my right kidney. "If you're growing tumors, the treatment isn't helping," they said. I felt like I was drowning. Scared and sad, yes. But mostly I was furious -- not at my wonderful doctors but at God. While I'd had tremendous support from our church community, I'd lost all hope. I told Adam, "God and I are finished. I don't believe anymore."
My medical team held one more card: a stem cell transplant. They would use cells from a donor to replace my immune system. Normally, only people in remission can get this type of transplant. My cancer was actively growing, so I wouldn't ordinarily be a candidate. What's more, the standard prep of intense chemo and radiation might kill me. But the National Cancer Institute's Experimental Transplantation and Immunology Branch was studying a new approach. It involved low-intensity chemo, no radiation, and a lower risk that the donor's cells would attack my healthy organs in addition to the cancer.
The treatment had never been tried on a lymphoma patient with such a large, growing tumor, said David C. Halverson, MD, one of the team doctors. I learned later that he privately thought my case was pretty hopeless. But I knew I had to keep fighting because of Grace. I couldn't bear the thought of not watching my daughter grow up. Both of my sisters volunteered to be donors, and Amanda was a match. Transplant day was surprisingly anti-climactic. Amanda's donor cells trickled from a low-tech plastic bag into a line in my arm in a 15-minute procedure. While in the hospital, I had to be careful about germs but I could wander to the library for magazines and see Adam and Grace in my room. After nine days I moved to a house we'd rented for the 100-day follow-up. Even though the treatment was a long shot, I felt my hope and faith starting to return. My weight kept dropping, though. That was awful. Believe me, 103 pounds on a 5-foot-7 frame does not look good. I had dark circles under my eyes, and there was nothing to me. Nothing. In July in Maryland, it was a million degrees outside but I was taking hot showers all day long just to warm up. I would stand in the shower and cry because I looked so gross.
Friends, relatives, and patients I'd met started prayer chains, which grew and spread all over the country. I had so many people in my corner -- the great medical staff, my family, friends, and even strangers. I don't believe God doles out miracles just because you pray. But knowing that these people were pulling for me lifted my spirits.Finally, Some Good News
On post-transplant day 28 several researchers raced into my room to deliver test results. They were excited to tell me that the tumor had stopped growing -- and areas of it were clearly less active. "We couldn't ask for better results this early in the treatment," one said. Nurses popped in to congratulate me. I was ecstatic but cautious. I'd been knocked down so many times that I feared a tsunami might still be lurking over the horizon.
Around day 60, a horribly itchy rash appeared and quickly spread all over my body. "Here it comes," I thought. My new immune cells were attacking my body. A few days later, I doubled over in pain after eating a banana as the reaction targeted my lower intestine. Despite my fears, my doctors were reassuring. "You're still doing well. The cancer is dying."
Then, on day 100, Dr. Halverson told us the big news: "There's absolutely no sign of active disease," he said. A torrent of emotion gushed out of me -- I was laughing, crying, laughing again. "My God, we've done it," I said. We called everyone we could think of and went out to dinner. After months of bad news and struggle, it felt almost bewildering, like standing on solid ground after the lifeguards haul you in, blinking at the beauty of a serene seascape and marveling at everything that just happened. Dr. Halverson told me later it was the most dramatic turnaround he'd ever seen.
I slowly started to feel like myself again. Or should I say my new and different self? I'm thankful to God and for the prayers of friends and strangers. On one level, I have a victorious sense of, "Screw you, cancer, I'm going to live to be 100." But the many cancer patients I've met who fought hard but didn't make it haunt me. I don't give myself credit for cheating death. Instead, I appreciate life for what it is: a gift I love, did nothing to deserve, and can never, ever, take for granted.