Life Stories: How I Told My Kids I Quit the Medication That Saved My Life

Every morning for the past 13 years I’ve been taking a little orange pill with my breakfast. I swallow it as mindlessly as my kids chew their purple multivitamins, only my pill doesn’t help me grow big and strong. Mine is a tyrosine kinase inhibitor that shuts off the oncogene Bcr-Abl and keeps my chronic myelogenous leukemia (CML) at bay.

Translation: It’s a miracle drug that helps me stay alive one I started taking in 2001, when I was 23 and diagnosed with CML, a slow-moving form of blood cancer. This drug, called Gleevec, had just been approved by the FDA, and was the first targeted cancer therapy of its kind. The trial results were astonishing, with Time magazine calling Gleevec “the bullets” in the war against cancer.

No one knew how long it would work or what the long-term side effects might be, but it was my best chance at survival. And thanks to Gleevec, I didn’t only survive, I thrived: Within a year of my first dose, I was in complete molecular remission, where I’ve remained for over a decade, with no major side effects. As far as cancer patients go, I am incredibly lucky. I owe my life — both the simple fact that I am here and that my existence is so rich and full — to this drug.

But I’ve decided to stop taking it.

I’m going off treatment as part of a government-sponsored clinical trial that my doctor, Michael Mauro, fully approves. He’s the one who brought the trial to Memorial Sloan Kettering Cancer Center in New York City, where I’m a patient. I always thought I’d have to take Gleevec forever, but researchers now believe that for about 50 percent of CML patients, Gleevec (and the other drugs like it now on the market) could actually be curative, or able to put patients in what they call a “treatment-free remission.” My doctors believe I am in that 50 percent. And I really, really want that to be true.

The author, about to take her last Gleevec pill. (Photo: Erin Zammett Ruddy)

There are many reasons I want to get off this drug, not the least of which is this: Even though Gleevec is a pill, it’s still chemotherapy — it comes in a HazMat bag, for crying out loud. If doctors believe I don’t need it, why would I continue to take it? I also can’t help wondering what it would be like to finally close this chapter of my life.

I’ve been a cancer patient for more than 14 years — at times I’ve even been a “cancerlebrity” of sorts — and that identity has been good to me and has helped me do good for others. I’m on the board of the Leukemia & Lymphoma Society and I’m an Angel Ambassador for Gabrielle’s Angel Foundation. I love my life with cancer, but I want to see what I’ll feel like — physically and emotionally — without Gleevec in my daily routine. What it will be like to have a life after cancer. Plus, the trial is safe: As part of the protocol, I will be monitored monthly — if my cancer makes a peep, I go right back on treatment and, as previous trials have proven, the drug will still work.

One of the many reasons my doctors believe I’m a great candidate for the trial is because I’ve gone off the medication three times before, for about a year each time, to have my three children. It was a risk, but one we considered carefully. And my cancer remained in remission throughout my pregnancies, which means it should remain in remission this time, too.

Of course, the fact that I now have those children made the decision-making process that much harder —  both for me and my family. There is more at stake than ever before, and no one understands that more than me, I promise. Every person gets more in touch with their mortality once they become a parent, but when you’re a mom and you’ve already have cancer, you don’t have to create some hypothetical tragedy that could befall you. I can picture myself getting the call, starting the treatment again, failing the treatment, scrambling for other options, losing control.

The author’s three children. (Photo: Erin Zammett Ruddy)

My family has watched Annie a few too many times recently, and my older two kids are particularly fond of belting out, “It’s a Hard-Knock Life.” It always makes me laugh, because what they have is the opposite of a hard-knock life. And, at 8, 5, and 2, that’s the way it should be. But now I’m volunteering to do something that could destroy all of our lives, something that wouldn’t just knock them down, but completely crush them. My dying would change their life story. It would change them.

When I told my son, Alex, who’s 8 going on 18, that I was going to stop taking my daily pill soon because Dr. Mauro thinks I don’t need it anymore, he asked, “But what if your cancer comes back?”

“It won’t,” I said quickly and confidently, to reassure him — and myself — that it wouldn’t. “But if it does, I’ll go right back on Gleevec and it will go away again. You don’t need to worry, bud. Are you worried?”

And then came this: “Honestly Mom, I’m not that concerned. But maybe as the firstborn I should be. I mean I don’t know much about cancer, but I know it’s not a stay-at-home sickness like bronchitis. You’d probably have to go to the hospital, like, if you had bacterial meningitis, like that snowboarder from the Olympics. I can’t remember her name. It’s not going to happen, this is fiction, but let’s just say you get cancer again. You’d be lying in bed all day and your medicine would make you feel terrible. And if dad is still working in the city he’ll never be around. Nora and I are pretty good at taking care of Molly. And I can make eggs—scrambled or fried—and guacamole and probably steak indoors. We could feed Molly and play with her, but you have to be there to read to her and give her baths and her put her to sleep. I’m not sure we could handle that.”

And I’m not sure I can handle any of this. On November 11, I swallowed the last Gleevec pill I would ever (hopefully, fingers and toes crossed) have to take. I already feel like I have more energy, and can’t wait to see what other positive changes are in store. I’ve shared this excitement with the kids, framing the trial as a big important step for both the cancer community and me. Mommy doesn’t have to take her medicine anymore, yay!

I’m so excited, but, yes, I’m also nervous. I say it’s no big deal, that my cancer will stay away, that I’ll go back on Gleevec if it doesn’t. I say it with certainty—and I truly do believe it—but when it comes to cancer, there are no guarantees, ever.

Even long after remission is achieved, there is always, always a shred of doubt that creeps in when you have a strange ache or a weird bump or a routine physical with a regular old doctor who just wants to draw some blood. Will this be the time the cancer comes back? Will this be the call that changes everything? Gleevec helped suppress so many of those thoughts for so many years. But what happens when I remove it from the equation? Next week I head to Sloan for my first blood test after stopping treatment. I have a pit in my stomach just thinking about it. I want this to work so badly. I need this to work. And I truly believe that it will. But only time will tell.

January 4, 2016

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