Chronic Lymphocytic Leukemia Survivor
A Great Time to Be Alive
Marc Summers is a TV host on the Food Network, TV game show host, former stand-up comic and magician, and a cancer survivor. He’s also a husband, father and grandfather who has successfully managed a CLL diagnosis since 2009.
This part of my life story began one evening when my wife and I had sushi for dinner, and my stomach was upset after. I chalked it up to bad fish, and my wife chalked it up to gas. It worsened over the weekend, and I was in such severe pain that I saw my doctor on Monday. He immediately noticed my stomach was distended, which I attributed to weight gain. He was concerned I had an intestinal blockage and, after doing a PET scan, sent me to the hospital for exploratory surgery.
I’m the first to admit that I’m a terrible patient, so none of this thrilled me. Plus, I had a lot going on. I was in the middle of a show on the Food Network, and my son was in New York City, preparing to propose to his girlfriend. I was talking with the hotel about a room upgrade for their special night as I was being wheeled into surgery, and they literally had to take the phone out of my hand. When I woke up in recovery, I was in extreme pain. But, true to my personality, I jokingly asked the doctor, “What’s going on? Do I have cancer?” And he responded with the words no one ever wants to hear. “As a matter of fact, you do.”
There was a blockage, and he removed 17.5 inches of my small intestine. He knew it was cancer, but he couldn’t pinpoint the type. He suspected chronic lymphocytic leukemia (CLL). CLL, however, didn’t usually present with a blockage, so he was puzzled. I spent almost a week in the hospital while he shared my results with a specialist he hoped could shed light on the situation. The specialist confirmed the diagnosis of CLL and, as I left the hospital, my doctor advised me to see an oncologist. More words I’d hoped never to hear.
I was referred to a local doctor in Los Angeles, who spent a few hours “interviewing” me. He wanted to get a bone marrow sample, but I refused. I had always heard that it was just about the most painful medical test you could have, and I got scared. I grabbed my wife and we left. I couldn’t, and I wouldn’t, do cancer. I told her I was going home and forgetting about it.
Two days later, after my wife talked me into it, I called the doctor back and asked him what the procedure would be like. Assured it would feel like a bee sting, I reluctantly agreed. I took meds to calm my anxiety and had the procedure. That was no bee sting. It felt more like a hornet’s nest was let loose on my back.
When I went back to discuss the results, the oncologist recommended aggressive treatment with chemotherapy to kill the cancer cells in my bone marrow. The regimen sounded extreme to me. Was I really that sick? I asked him if I should get a second opinion. He asked me if I would take my car in for a second opinion, and I said I would, so he told me to do it.
I was referred to an oncologist in Chicago. Although he hadn’t been practicing long, this doctor was considered a rising star, and it was kind of a coup to get in with him. Neither my wife nor my kids were able to go with me, so I flew there alone for the appointment. After he examined me, he asked if I had my papers ready. I was confused, and he explained he was talking about a will. He told me I had mantle cell lymphoma, and I had six months to live. I left the office, crying, and called my wife from a cab on the way to the airport. I couldn’t stop thinking of all the things I wouldn’t get to see, like our kids getting married and our grandchildren. When I got to the airport, I called my doctor in L.A. and told him I had mantle cell lymphoma.
“No, you don’t,” he told me. “I’ve already tested you for that.”
There I was, with two doctors telling me I had two different cancers, and one came with a death sentence. They ended up speaking on the phone, without me involved, and the second doctor denied making the deadly diagnosis. As clueless as I was about all of it, I obviously didn’t make it up. I’d never even heard of mantle cell lymphoma before that day. At that point, I felt like I was in the Twilight Zone. My L.A. doctor asked if I was ready to start treatment or if I wanted a third opinion. I opted for a third opinion.
I called a hospital in my adopted hometown of Philadelphia. I told them I’d been diagnosed with two different cancers, and I needed someone to tell me which one I had. They connected me with an oncologist who, along with being quite possibly the nicest person ever, would turn out to be the man I credit with saving my life.
It had been about four months since I’d had the surgery, and I told him I felt like I needed to get going on some kind of treatment. The first thing he did was review my test results so he could rule out mantle cell lymphoma. Once he was confident that I, indeed, had CLL, we talked about my options. He didn’t agree with the aggressive plan my first doctor in L.A. had. He also realized that, after getting to know me, I was kind of a nervous guy. He didn’t think I’d be comfortable with watching and waiting. That left us with an approved targeted therapy that I’d take for two years. He was excited about this drug, so my wife and I agreed.
Being on TV, I, of course, asked if I’d lose my hair. He told me probably not; however, he did expect that I’d get pretty sick after the first eight-hour infusion. He was right. After I got home, I spiked a fever of around 104° F, so I went to the ER. I was severely dehydrated. I got fluids and was sent home. I finished out the treatment, going once a month for two years, with the occasional PET scan. That took care of everything for about six years.
In July 2017, I had a physical in L.A. I wasn’t feeling good and, sure enough, my white cell count came back high. I called my doctor in Philadelphia and he reminded me that what might be high to one doctor may not seem high to him. I flew to Philadelphia to see him and found out the cancer was back. But, he was ready with a solution.
“Let’s do something better,” he suggested. He was talking about a different targeted therapy that, according to him, was remarkable. I had a tour planned to promote my documentary, "On Your Marc," and I considered putting off treatment until after it. My doctor was not in favor of that, and a close friend thought I was out of my mind. Instead of putting it off, I made plans to travel back and forth from L.A. to Philadelphia for the infusions. He warned me that this drug could make me pretty sick in the beginning and, again, he was right.
During the first infusion, I felt like a human popsicle. I was freezing. My wife rubbed my back, and nurses wrapped blankets on me. I couldn’t warm up. When the doctor came in, he jokingly asked if I was looking for attention. Then he explained that the shivering was a good thing. It meant the drug was working, basically blowing up the cancer cells. But, I also had a fever of 103°, so he cut that treatment short and sent me home. The next time, we tried a slower infusion. I got sick again, but not as bad. After just the second infusion, my blood test results showed no evidence of disease. With each treatment, my body seems to be better at handling it. I have more energy than ever. Recently, I was able to do a performance just 24 hours after a treatment. I will finish out this therapy and remain on a maintenance drug. My doctor is confident that if the CLL returns again, we’ll have even more options. He is incredibly optimistic about the drugs in clinical trials right now.
For many years, I kept this part of my life private. Not long ago, I was a guest bartender at a fundraiser for a young woman who had cancer. Talking to her really moved me, and I realized that I might be able to help someone with my story because I have certainly learned a lot from this experience.
First, I can’t emphasize enough the importance of trusting and being comfortable with your medical team. When I was going through treatment, and in my own temporary hell, I had the most caring and loving doctors and nurses. That was important, especially at the beginning, because the nine months following my diagnosis were scary and depressing. I was lower than whale poop. Every time I picked up the paper, I read about someone who died from CLL. My doctor reminded me that every situation is different, and that I couldn’t compare mine with anyone else’s.
I also learned that cancer doesn’t discriminate. When I would go in for infusions, I saw teenagers and young people who had diagnoses that were much worse than mine. I remember one particular treatment. The guy getting an infusion next to me recognized me from TV. He asked what I was doing there, and I said, “Same thing as you.” Surprised, he said, “Wow, I didn’t think guys like you got cancer.” Cancer isn’t choosy.
I feel for anyone going through this because it’s hard. Seeing a professional counselor is always an option. I made an appointment with a psychiatrist, but before I went, I had an epiphany. Sure, I’ve been diagnosed with cancer, I thought, but I have the support of my family, I have great doctors, I’m going to work and it’s under control. I feel incredibly lucky to be alive at a time when we have the kinds of medicines we do.