My grandfather was a statistician, and from a young age he taught me to always consider the odds. A pragmatic man, he couldn’t help teaching me when to hedge my bets, especially when it came to playing Uno. Unfortunately, he never could have prepared me for the odds I would face in the years to come.
Shortly after celebrating my 25th birthday, I was given a diagnosis of Hodgkin’s lymphoma. After some research and a healthy dose of naïveté, I felt I could kick it pretty swiftly. After all, everyone reassured me that I had the “good kind” of cancer, with an over 90 percent survival rate. Those were odds my grandfather taught me I could get behind.
But two months into treatment, the odds changed; my cancer didn’t respond to standard chemotherapy and had begun growing out of control. I now truly feared my own mortality. But most of all, I feared the excoriating pain and emptiness my family would feel if I weren’t to survive. What would my mom do each year on my birthday? How would my brother and sister feel knowing I would never meet my unborn nieces and nephews? Who would take my place on my best friend’s speed dial?
Those fears motivated me to fight. My job now was to simply stay alive. I headed south from New York City for Houston to undergo salvage chemotherapy and a stem cell transplant.
My life turned upside down, and before I knew it, I no longer recognized myself in the mirror. My hair, including eyebrows and eyelashes, fell out. My face became swollen from steroids while my body grew thin. Purple marks decorated my joints and eye sockets.
As my chemo cocktails became stronger, I became weaker. I endured five months of chemotherapy just to prepare me for an autologous stem cell transplant, which marshals my own stem cells. But the transplant left my immune system compromised, forcing me into isolation for over a month. My jail cell was a 10-by-10-foot hospital room, and my restraints were IV poles carrying dozens of drugs. My fevers spiked above 104, sores lined my throat leaving me unable to swallow. I had to get my nutrition through the IV. This was the closest I had ever felt to death, but I was too sick and too weak to be scared.
After 10 months, I returned to my old life in New York, but I had left as one person and came back as another. I was surrounded by friends, and a boyfriend who tried to be supportive. But how could they understand the crippling fears of dying I faced almost every waking minute? I was now given a 75 percent chance of survival but never felt as if cancer was done with me. I spent hundreds of hours, and thousands of dollars, on psychotherapy, trying to figure out if my fears were justified.
A year later, it turned out they were. I relapsed. No one could tell me my odds of survival now, but I didn’t need my grandfather’s Ph.D. in statistics to know they were not good.
I went back to Texas, where the doctors wanted me to undergo a second stem cell transplant, this time from a donor. There are over 14 million people on the stem cell/bone marrow registry worldwide, but not one was a perfect match for me. Now, I needed to find a way to buy myself a few years, in hopes that the next miracle drug was around the corner.
With no traditional options left, I enrolled in a clinical trial. At best only a few hundred people around the world had taken the drug being tested, and no one really knew what it did to you. It made me as sick as traditional chemotherapy, required full body scans every three to six weeks (that’s a lot of radiation) and lots of platelet transfusions. But miraculously, it put me into complete remission. They told me I was only one of two people known to achieve this.
Doctors didn’t know if the drug would keep me in remission, or whether I should stay on it or not. We took a gamble. I went off it and began proton therapy, a new approach to radiation at the time. It was more targeted, with less damage to healthy tissue, but there was little data on its use for lymphomas. I finished 35 rounds of radiation and was still in complete remission. After seven months I was finished with treatment, but now came the hard part: once again living my life scan-to-scan and playing the cruel mental game of wondering what the chances were that my cancer would return.
It’s been seven years and I’m still waiting. My doctor and I will never use the word “cure” and while I’m unsure I’ll ever fully “move on,” I’ve been living life to the fullest. I moved to Chicago to be closer to family, and there met my husband. My doctors had told me the transplant would leave me infertile, unable to ever conceive, but together we somehow produced the most amazing daughter. We say she was destined to be here, and she is.
Like many new mothers, I had postpartum anxiety, anxiety that was amplified by my complex medical history and the unanswered questions that overwhelmed me. How much time do I have before my cancer returns again? What are the odds that I will see my daughter grow up, that I will take her to her first day of school, see her off to college or walk her down the aisle on her wedding day?
When my daughter was 8 months old, I ended up in the emergency room the day after Thanksgiving after a terrible headache that had lasted for three days. An hour after I had a CT scan, a young doctor came in and told me I had a large mass on the right side of my brain. She suggested there was a good chance my lymphoma was back and had spread to my brain, telling me this almost with a sense of pride, as if she had solved a great mystery.
I was paralyzed by the news and wanted to rip the IV out of my arm and run home to my daughter, but I couldn’t move. I felt an arm come around me and looked up to see my husband crying, the only time I’ve ever seen him shed tears.
After several weeks of doctors’ appointments and many scans and medical tests later, the doctors concluded there was nothing malignant lurking in my brain. I had suffered a stroke and am now epileptic and often have severe headaches because of it, but I did not have cancer.
During this tumultuous time, I had an epiphany that maybe cancer wouldn’t be my undoing. I’m still not sure if this is a good thing or not. But what I do know is that bad things can come out of nowhere and at any time. And against all odds, I am still here.
So nearly a decade after I was first given a cancer diagnosis, this is my declaration: I’m done with the statistics. I could continue to obsess over cold and unforgiving facts, or I could choose to be present and enjoy all the beautiful moments that make life worth living, from seeing my daughter’s face light up every time she hears a song from “Mamma Mia!” to watching how my husband carefully takes her hand to help her walk down the aisles at the grocery store. These are the moments I will fully absorb and be grateful for, rather than counting down how many of them I may have left.
If my grandfather were still alive, I’m sure he’d agree.
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