As told to Melissa Pheterson
When I met my wife-to-be, I immediately told her about my cancer. It was part of my life, and it wasn’t always noble. I would sometimes use the cancer to justify churlish behavior or avoid certain situations. Instead of admitting, “I feel self-conscious at the gym,” I would say, “Stop asking me to work out with you. My life feels too short for things I don’t enjoy.”
A few years later, I took my family to my company picnic. The next day, I spotted a red welt on my back. I returned to the oncologist I had seen a decade earlier. It was the same setting, the same routine, except for more paperwork and extra insurance charges packaged as “room fees.” Waiting five days for the biopsy results, I became consumed with worst-case scenarios. I spent my days in the office googling my physical symptoms, increasingly convinced that my condition was fatal. Finally, the doctor called.
It was a bug bite.
At 24, during my final spring break of law school, I went home to Rochester, in upstate New York, to see my childhood doctor about purple bumps on my back and arms. I’d assumed they were bug bites, but they didn’t itch — and they’d started to grow and spread. My doctor did a biopsy.
On April 1, 2003, my dad called me with the results: indolent diffuse large B cell lymphoma.
We discussed how I’d get home. My doctor was setting up an appointment with an oncologist, who was setting up an appointment with a radiologist and scheduling a bone marrow exam to see how far the cancer had spread. Then I said goodbye, hung up and looked at the clock. At 6:15, a friend was due over for his birthday dinner. My roommates were in their rooms. It was a little before 6.
I heard Will coming up the steps. He opened the door to our apartment and started shouting. He was beaming. He asked again if I was ready to buy him a fine steak.
I smiled, but I think he could tell something was off. I said I was looking forward to it. And then I told him about the phone call with my dad. My voice started to break. Given that it was April Fool’s, and my friends and I had a history of pulling elaborate pranks on one another, I had this fleeting worry that Will would think I was joking. But the concerned look on his face made it clear that I didn’t need to worry about him not believing me.
The first thing he said was that we could cancel dinner. “No,” I said. “If I don’t get out of here, I’ll sit alone in my room thinking about cancer the whole evening.”
Because my cancer was indolent, or slow-growing, I didn’t need to race against the clock, nor did I need to dash out a will bequeathing a friend my PlayStation. Instead of rushing into aggressive chemotherapy, my doctor recommended trying a then-experimental injectable treatment called Rituxan.
For the rest of the semester, I drove from school, in Boston, to Rochester once a week for a six-hour appointment. I also had to get infusions of Benadryl, to prevent any potential allergic reactions to the Rituxan. But I insisted on receiving only half a dose so that I wouldn’t be too drowsy to make the five-hour drive back to school. I didn’t want my treatment to interfere with my classes, homework or social life. My friends were happy to mobilize, throwing themselves into party plans for “PheterFest 2003: Stayin’ Alive.”
By finals week, my treatment was over. And by my three-month checkup, my cancer was in remission. I was one of the lucky ones; I’d beaten cancer. What I didn’t know was that beating cancer didn’t mean saying goodbye to it.
What was the point of slaving away for 2,500 billable hours if my cancer returned and did a number on me?
With my J.D. in hand, I entered the workforce on schedule and proceeded to navigate adulthood with support from my family, decent health insurance and job options that paid well. Even from that position of privilege, cancer still restricted my choices and complicated my life. I can only imagine what it’s like for young adults who have to drop out of school, take on medical debt or scramble to find any job with adequate coverage.
The type of cancer I’d gotten was rare among young people. As a result, my doctors told me, there were no reliable studies to shed light on my long-term prognosis. Without any sense of what my health would look like five, 10 or 50 years down the road, I wasn’t willing to spend my 20s chained to a desk when I wasn’t sure I’d even live to see my 30s. But I also didn’t feel like I had a choice.
Insurance companies didn’t see me as a tough or lucky cancer survivor. They saw me as a name attached to a preexisting condition. If I spent even a single day uninsured, I made myself vulnerable to being denied coverage in the event of a relapse. So I didn’t pursue start-up ideas or try my hand at entrepreneurship, as some of my friends were doing. Instead, I limited myself to the notoriously grueling but lucrative “Big Law” track. It was all about risk mitigation: If my cancer ever came back, I’d need savings and insurance to keep me afloat and alive.
At the same time, I felt unfulfilled and even deflated by the idea of hewing to my career path. Nothing about corporate law seemed all that conducive to health (or happiness). What was the point of slaving away for 2,500 billable hours, or more, sleeping under my desk and traveling to Hong Kong on a moment’s notice — all in an effort to make partner one day — if my cancer returned and did a number on me? Even if I stayed cancer-free, I worried that years of constant stress and scant sleep would, quite literally, kill me before I reached the ranks of partner.
Six years after I beat cancer, I became a father. I took comfort that my career was drawing a steady paycheck that paid our mortgage and put food on the table, even though it brought me little fulfillment. But whenever I saw bumps or welts on my children’s skin, I’d immediately think back to that April evening and jump to the worst conclusions: How am I going to tell my wife? What if I never get to see them grow up?
When my son was a baby, I noticed light brown splotches on his skin and rushed him to the pediatrician. Panic had clouded my eyes and my judgment; to me, it looked like lymphoma. The pediatrician calmly deduced they were droplets of TriViSol vitamin, which sometimes dribbled down his chest.
In its way, my cancer has stuck around. Getting life insurance at reasonable rates has proved nearly impossible. The Affordable Care Act has provided some mental relief by preventing insurance companies from denying coverage based on pre-existing conditions. But so long as litigation threatens the fate of the ACA, leaving open the possibility that insurance companies can resume denying coverage for pre-existing conditions, I can’t afford to have any gap in health coverage. My status as a cancer survivor continues to punish me, confining me to the path that holds both the least risk and, for me, the least fulfillment.
Recently, on the sidelines of my daughter’s lacrosse scrimmage, I began to chat with a new friend and fellow parent. Uncharacteristically, I confided in this woman about my cancer, partly because she’s an oncologist. After hearing just a few details, she exclaimed, “I know about you!” My case had been presented at a lymphoma conference during her fellowship. It had made history. That also meant it had receded into the past. I no longer need to break the news to my friends; now the legacy precedes me.
I read somewhere doctors are not trained to look for the zebra but they look for horses. It seems an appropriate analogy simply because your age or other things do not fit into that square box then it cannot be cancer or other disease because you don’t fit into what physicians see most often. We need doctors who think outside the proverbial box and are willing to say well it just might be a zebra so let’s investigate and approach this differently especially when there are elusive symptoms that don’t meet every known symptom for a particular disease. I say this from my on personal experience. I’m glad to see he is thriving and came out on the other side thanks for a great story.