On November 13, 2001, I was diagnosed with chronic myelogenous leukemia. I didn't feel sick but a routine blood test at my annual physical revealed an elevated white blood cell count (normal is between 4,000 and 10,000; mine was close to 100,000). CML is a slow-moving form of blood cancer, but one that traditional chemotherapy and radiation do little to stop. Without effective treatment I would have had five years to live. Needless to say, life came to a screeching halt for a while. Fortunately for me, a new drug – in pill form – had just been approved by the FDA to treat patients with CML. Gleevec, it was called, targeted the bad cells without harming the healthy ones. That meant there would be no hair loss, no nasty side effects, no need to get sick just to get well. But would it work for me?
A few weeks after my diagnosis, my parents and I flew to Portland to meet Dr. Brian Druker, the man who developed the miracle pill, and his colleague Michael Mauro. They were running clinical trials out of OHSU to see if they could make Gleevec even more efficient. Within moments of meeting the doctors (two of the kindest, gentlest, most intelligent people I've ever known), I knew I was in the right hands. And I knew I would do anything – like continuously fly 3,000 miles – to stay there. Ultimately, I joined a clinical trial headed by Dr. Mauro, one that combined 400 milligrams of Gleevec with daily injections of a standard chemotherapy. For 18 months I pumped myself full of these drugs (I had to inject myself with the chemo, which I never quite excelled at) and traveled back and forth from the East Coast to Portland every few months to check in. I had nine bone marrow biopsies (where the doctor cranks a giant hollow needle deep into the back of your hip bone to extract marrow and a chip of bone) in less than two years. There were lots of tests, lots of what-ifs, lots of worry and wondering. Would I ever be cured? What if the drug stopped working? Could I have kids someday? What were the long-term effects of this very new treatment? Should I just have a bone marrow transplant (the only known cure for CML)? I documented all of this for Glamour magazine in the "Life with Cancer" column I wrote for nearly eight years (you can read them all here) and my book. It wasn't the best time of my life, but I knew it then and I know it even more now: I was lucky.
I had an amazing support system in my family and my friends and my incredible coworkers at Glamour. My now-husband, Nick, was with me every step of the way. And I had hope. This drug truly turned out to be a miracle and I had the best doctors in the world in my corner. I often joked with Dr. Mauro that I would fly to the moon to be his patient – that's how important his care is to me. And within months of taking that first photograph, I was in remission. I have remained in remission for the past 12 years (after the first 18 months of chemo injections, I switched to Gleevec exclusively). I have no side effects to speak of and I simply take my pill like a vitamin every morning. I stopped going to Oregon for visits years ago and just ship my blood there every three months for testing. And even though we didn't know if it would be possible when I was diagnosed, I was able to stop treatment three different times to have my children (almost three … the third is due in November). Three kids! After cancer! Who could believe it?! And my leukemia never came back, despite being off treatment for 10 months twice. I've been off for nearly eight months for this final pregnancy and so far, so good. (I've written in detail about how we manage it all medically.)
What a difference 12 years makes!
And so here I am 12 years later. I have a completely normal, rich, full, healthy life. I still have cancer somewhere deep down, but even the most sensitive tests can't find it. Before Gleevec, the survival rate for my form of cancer was 50 percent. Today, with Gleevec (and several other Gleevec-like drugs now on the market), the survival rate is 95 percent. Not bad, right? I went to see Dr. Mauro last week just to catch up. Over the years, he's become so much more than a doctor to me. He was the guest of honor at my wedding and when I won the title of Woman of the Year for the NYC Leukemia & Lymphoma Society in 2012, he flew in for the night just to surprise me – that's the kind of guy he is. He just took a huge new position as the head of the Myeloproliferative Disorders Program at Sloan Kettering and he asked me to be his first patient. I was beyond honored and couldn't wait to hop in the car. For the first time in 12 years, I wouldn't have to fly across the country to see him! I brought my kids and my mom with me for the visit (he knows my family well) and it was a treat for all of us. We caught up on our respective lives, discussed the future of my CML and Gleevec use (all good), talked about his plans for the program at Sloan, and managed to keep my kids fairly calm throughout. (Dr. Mauro let them listen to their own heartbeats in his stethoscope, which they thought was very cool.) I had some blood taken and then we met Dr. Mauro's wife, Anne – she's also a friend and, incidentally, a super-talented designer who made my wedding gown – for pizza.
As I look at this photo, I'm struck by how much has changed in 12 years. And how lucky I am. When life is moving at the rapid pace it does, especially with kids in the picture, it's easy to forget how far we've come, what we've beaten, how bad things once were, and how unbelievably lucky I am to be where I am and who I am today. Seeing Dr. Mauro last week was a great reminder, one I needed. As I get ready to have my third post-cancer baby, I want to reflect on the miracle of it all. I want to enjoy it and embrace it and not take anything for granted. We all know that not everyone is as lucky as I have been. And I wanted to share this photo so that maybe someone who was just diagnosed with cancer will see it. And when their family and friends tell them that they will beat this, that they will survive, that they will still be able to have everything they want in life … they can believe it. Because life with cancer, life after cancer, is possible. I'm living proof of that.