When and how were you diagnosed with lymphoma?
It was 2007 and I had been feeling some tightness in my chest. My daughter was five months old and I was just getting back to playing with my recreational basketball team (we were in the bottom league, but did win the next year). Anyhow, I thought I was just a little out of shape and out of breath. One night I woke up in the middle of the night and I couldn’t take a deep breath. I woke up my husband and said we should just go to the ER to make sure it was nothing. I wasn’t really worried, but I thought it was better to go in the middle of the night while the kids were both sleeping. A few hours and a CAT scan later, I left the ER with a note that said, “You have a mass in your chest. Follow up with a doctor.” More tests and bloodwork the next day determined it was lymphoma, which is a blood cancer. I started chemo at Memorial Sloan Kettering about a week later.
What was more traumatic—the physical experience, or the emotional one?
Definitely the emotional one. The physical experience is no walk in the park, but the emotional impact lasts a lot longer. When you have the rug pulled out from under you, it takes time to recover. I used to think I’d never get over the fear of being sick or having my cancer recur. It was the first thing I would think about every morning when I woke up and the last thing at night before I went to bed. I can still remember a few years out when I realized it wasn’t controlling my life anymore.
What sort of treatment did you have to undergo, and how are you feeling these days relative to what you’ve been through?
I went through an accelerated course of R-CHOP. It’s a chemo treatment, plus a monoclonal antibody. I was lucky that my doctor, Dr. Carol Portlock, recommended not having radiation to my chest. At first, I was nervous about that decision, but I’m so happy we made it. I feel great. I am so lucky that I was able to benefit from research and be near a world class cancer center like MSK.
Did you discover any alternative remedies—or just general tips—that you found helpful in terms of managing your pain?
I loved doing yoga with Kristin McGee and getting massages at MSK’s Bendheim Integrative Medicine Center. I’ve also done acupuncture and a ton of meditation.
Were there ever times you felt like any of your doctors weren’t really listening to you, or worse, gaslighting you? Is there anything they didn’t tell you that you wish they had?
I am lucky that I had an incredible team. They listened and answered all my crazy questions. I do wish I had more access to them, like constant access. Sometimes you just don’t want to be a burden because you know there are worse cases than your own. Honestly, everyone just wants a doctor to tell them they are going to be OK, but that’s not what oncologists do, so finding someone who listens and treats you with respect is the key.
Can you describe any moments of humor that happened along the way?
I remember when I started losing my hair and decided to shave it off. My 3-year-old son came home from preschool and said, “Mommy, please put your hair back on.” Honestly, things are probably funnier in retrospect than they were at the time. I smile now thinking about my husband trying to give me shots to boost my white blood cells or remembering playing cards with my sister as we waited in Urgent Care at MSK.
Speaking of humor, you co-founded Comedy vs. Cancer, an annual fundraiser that has raised millions for blood cancer research at Memorial Sloan Kettering. Tell us a little about it, and how it’s helped connect you with people in the larger community.
Nothing is better than a good laugh, right? Once I was better, I knew I wanted to do something to give back. Early in my cancer journey, I met Niccole Kroll in the waiting room at MSK. We had heard about each other and had friends in common and we just hit it off. It was so nice to have a friend who lived in the neighborhood, had just gone through chemo for a blood cancer and had little kids (she had three at the time, now four). We wanted to do something different than your typical gala dinner. Her brother-in-law and my husband both work in comedy and they helped pull it all together. We’ve raised money for the Leukemia and Lymphoma Society and now for MSK. We’ve been so lucky to have Nick Kroll as our event champion and MC. Cancer has touched everyone and comedians have been really generous with their time. John Mulaney, Tina Fey, John Oliver, Hasan Minaj, Ronny Chieng, Roy Wood Jr., Seth Meyers—the list goes on and on. We are currently funding five physician-researchers dedicated to defeating cancer through CAR T research.
What advice do you have for anyone who’s suffering from cancer—or any sort of chronic condition?
Find your team. You can’t do it alone. Sometimes the team is small. Others have a deep bench. You need your leader, your position players, your spiritual guru, that person that will just listen to you. It’s like cooking. You need all the right ingredients. People want to help. Let them. Don’t be afraid of it. I also tell newly diagnosed people to just be nice to themselves. Sleep when you’re tired. Eat when you’re hungry. Sometimes that meant I was awake in the middle of the night and nibbling on food as I re-read all the Little House on the Prairie books, but I didn’t stress about it. Who cares if you’re up at 3am? Just get up and don’t beat yourself up about it. Steroid doses with chemo are pretty powerful so you might be up all night. Pick up a book though and stop going online and searching survival statistics!
What would you say is the biggest misconception about lymphoma? Is there anything you wish you could make people understand better?
I didn’t even know what lymphoma was when I was diagnosed. I didn’t know it was a blood cancer. There are so many types and sub-types. It’s not a monolith. When I talk to people newly diagnosed that’s one of the harder things to navigate—finding out what you actually have.
Any good words to live by?
Say yes. I am always up for the next adventure. As one of my favorite musicians and fellow lymphoma warriors Steve Goodman wrote in his song “The Ballad of Carl Martin” —From the cradle to the crypt is a mighty short trip so you better get it while you can.