Last week we celebrated my older daughter’s fifth birthday. It was a great day, including bowling with her friends, cake and candles, presents, and lots of laughs and smiles. It was everything one hopes for for their child. On the night of her birth, five years ago, I wasn’t sure I’d live to see this day.
In 2005, I was diagnosed with a rare form of non-Hodgkin’s lymphoma. The lymphoma likely dated back to at least 2003, when I felt a tiny lump in my neck, and was told by several doctors that it was nothing to worry about. But when the lump grew two years later, it was biopsied. That was just six weeks after I got married. I had just started a job at the Drexel University School of Public Health, and I was a 36-year-old, organic-eating triathlete who did yoga and meditated regularly. I was the epitome of healthy. How could I be sick? I wondered if my dog would outlive me. And I wondered if I’d have children and celebrate life’s joys with them and my wife.
Thankfully, I found my way to the Hospital of the University of Pennsylvania where Dr. Steve Schuster came up with a plan. It turned out that my disease was slow-growing, so treatment could be delayed for months, perhaps years if I was lucky. This type of treatment, referred to as “watching and waiting,” was an adjustment. I had an unpredictable and deadly disease just hanging out inside me, and my wife, Jacqueline, and I were forced to adapt to our new reality. And we did. And as quickly as I was diagnosed, was as quickly as life got back to my new normal. We bought a home. I wrote and taught. And to our great joy and anxiety, my wife got pregnant.
But despite our best hope that my disease could go untreated for years, I was not that lucky. The disease started progressing during the summer of 2006. Jacqui was six months pregnant at the time. And, again, we were forced to adapt to a new normal.
So five years ago September I checked into HUP for a brutal chemo regimen that required me to be an in-patient every three weeks for three nights for over eight months. That is not counting the four times during chemo that I had to be admitted to the hospital for a week at a time for dangerously high fevers due to the chemo wiping out my immune system. My wife, her belly growing bigger with each chemo cycle, nursed me through some horrible days and nights all the while sleeping on an air mattress next to me in the hospital.
In November 2006, perfectly timed to be halfway through the protocol, I got a six-week break so I could be scanned to see if the chemo was working – and so we could have a baby. On Nov. 30th, 2006 our daughter Sophia was born, and the very next morning, via email, Lisa Downs, the nurse practitioner who worked closely with my oncologist, sent me a note with the subject line: “Great News,” which bore, well, great news. The chemo had worked and I was in complete remission. I still had four months of chemo ahead of me in order to complete the treatment, but at least I knew that what had made me sick, and rendered me unable to take the best care of my wife during her pregnancy, had been a punishing success. Sadly, at that same time, during that same week of miracles, my father, who himself had been battling cancer for almost nine years, had a recurrence. He declined quickly, and would pass a few months later while I was tethered to an IV, unable to be with him at his end. It was not an easy time for my family, but in April 2007 I completed my chemo and started returning to a lymphoma-free life again.
I got through those lymphoma times with the love and support of family and friends. I never hesitated to reach out to talk with them about what I was going through. And I coped with all of the ups and downs by blogging as Bald Mike: to create a large support group for my wife and I, and to also create a network for my friends and family to reach out to one another. I blogged about both the mundane and the crazy from my chemo days. I shared the gory details of how my body reacted to drugs, wrote about my fears and my hopes for the future, and joked about everything from vomit to how I was convinced that Dick Cheney was conspiring to keep me locked in my own neutropenic prison. I even wrote about the horrible chemo-induced low-platelet nosebleed I developed on Yom Kippur that I called the “Great Yom Kippur nosebleed of 5767.” An ongoing study is examining the potential therapeutic role of blogging—both psychological and physiological—for cancer patients.
Non-Hodgkin’s lymphoma rates have nearly doubled since the 1970s. We have yet to figure out what drives this dramatic increase; some studies have pointed to environmental exposures such as pesticides or viruses. One thing is for sure: we will never eradicate this disease if we do not know what causes it. If we want to save future generations from this disease, public health must play a central role in cancer prevention, and epidemiologists and environmental health scientists must continue to help us figure out the causes of this illness so that we can begin to prevent it.
All of us have been touched by cancer in some way—friends, family, loved ones as survivors or victims. Public health prevention efforts, generally, are an increasingly important part of our health system. The Affordable Care Act has, for example, provisions addressing screening for a number of cancers. But prevention must also consider the root causes of illness, including the role that environmental toxins and other exposures play in causing cancers and other diseases. At the same time, we must acknowledge that current regulations do not always protect us from exposures that are known to or may potentially cause cancers and other diseases. Not to redress this situation is irresponsible – and may have, despite our hopes otherwise, severe health implications for ourselves, our loved ones, and our children.
I hope that nobody ever has to feel like I felt the day my daughter was born—the pure delight of that moment tempered by fears of an uncertain future. Five years later we breath some relief, but so much work needs to be done.
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