I Have Cancer, and I’m Lucky
by Jon Nevett, President and CEO of PIR
It is obviously very difficult to hear the words “You have cancer”– my first thoughts were of the impacts on my loved ones, my work at PIR, and obviously on my own mortality. I am lucky that my cancer was discovered by chance, and as cancer goes it is the “good kind” — it is localized, non-aggressive, caught extremely early, and very treatable.
Some background — after feeling congested for a long time, I went to a local ENT practice and they tried various non-invasive and invasive methods to relieve my symptoms. Finally, they discovered that my adenoids were enlarged and I went to a fantastic surgeon at Johns Hopkins Hospital who removed them. I was ecstatic that once again I could breathe clearly and people were able to understand me on the first try! Ten days later, however, I learned that the routine biopsy results showed that the adenoid growth was cancerous. I have Classic Hodgkin Lymphoma in my nasopharynx, which connects the nasal passage to the rest of the respiratory system. I later learned that lymphoma in this part of the body apparently is quite unusual – fewer than 1 in 1,500 cases!
The first step was to take a bunch of tests, the most important one being a full body cancer scan known as a PET scan. Thankfully, we learned that the cancer was limited to my nasal passage and hadn’t spread at all. We next met with the highly recommended oncologist at Hopkins who let us know that it was the “earliest” he has ever seen this type of cancer and that the prognosis was excellent. With that said, he did recommend a course of treatment that included chemotherapy followed by radiation and all the lovely risks of side effects – nausea, constipation, hair loss (ok if on my back, not so good if on my head!), etc.
The doctor was very supportive of waiting to start the treatments until we returned from a long planned family trip to Italy to see one of our amazing nieces marry a wonderful man at a breathtaking castle venue. Even when life is tough, there are silver linings. It was great creating memories with various family members in Rome, Bologna, Florence, and Venice! It also was comforting that the doctor was ok with my waiting a month to start treatment. He said that I should take advantage of my luck that it was caught so early and I should go on the trip.
Of course, when I inquired about going to Mexico for two nights in March in the middle of my treatment to attend a work conference that I haven’t missed in almost 20 years, he gave me a hard no. I will miss my ICANN friends and will Zoom in whenever possible. I look forward to attending the June meeting in person and starting a new streak of consecutive ICANN meetings around the world.
So back to reality, I had my first chemo treatment last Tuesday. All went well – I feel a bit lethargic and weak, but no real side effects. I also understand that it is cumulative and I will be hit much harder with each bi-weekly treatment. At the hospital, I saw and spoke with other patients, who have it so much worse than I do – bone marrow transplants and dozens of chemotherapy treatments under their belts, hats covering their missing hair, a lot of pain, but I saw a lot of bravery and some good humor too.
I am lucky. My cancer is nothing in comparison to my treatment-mates. I have an amazing wife, kids, family, friends, co-workers at PIR, and industry colleagues who continue to support me. My sister-in-law refers me to terrific doctors at one of the top hospitals in the world. I have the resources to handle the financial burdens. Hopefully, I will have only a few months of pain and discomfort, which will go away with the cancer. If I lose my hair, it will grow back. Unfortunately, others may not be as blessed. Like everyone else, I have had close family members and friends who haven’t survived cancer and others who have battled successfully. I have been following the news that my congressman and one of my political heroes, Jamie Raskin, also is going through lymphoma treatment. His version appears to be more aggressive and difficult, but he is strong, brave, and a fighter — I wish him only the best in his journey.
Why am I writing this?
My first instinct was to keep it to myself and a very small inner circle of family, friends, and colleagues. I could have just compartmentalized it, gotten through it, and moved on. I remember when my dad was in his 70s and he told me he had the “Big C” – that generation certainly didn’t often share news like this publicly. I have decided not to take that approach and to be open about it. Perhaps some good could come out of my story. First, I encourage everyone reading this to take care of themselves. If something is wrong, go check it out. It’s probably nothing (my typical instinct), but it might be something and you might get lucky too.
Second, I stumbled into my diagnosis because there was an impact on my breathing. Had I not had that issue, the cancer could have been growing inside me for many years without detection. After taking the full body scan, I now have a much better idea that I don’t have hidden cancer lurking and growing elsewhere in my body. So I have been thinking, why doesn’t everyone go for a full body cancer scan? We prophylactically test for many cancers – breast, colon, prostate, etc. What tests are there for other cancers? I suspect that full body scans currently are incredibly costly and may even have some dangerous side effects. What’s being done to rectify this situation?
As CEO of Public Interest Registry, I am able to celebrate .ORGs doing amazing work around the world. We have a fantastic awards program (the .ORG Impact Awards) that recognizes non-profits with incredible impacts. Over the next few months, I will be looking for organizations that are trying to solve the issue of making cancer testing and screening more ubiquitous, accessible, and affordable/covered by insurance. I want to make this issue one of my own philanthropic priorities. If you know of any great organizations with this focus, please email me at firstname.lastname@example.org. Please help me support organizations working to make testing the norm. Early cancer detection should not have to be the lucky exception.
A final thanks to my wife, Karen, my kids, Rachel, Michael, and Danielle, my amazing extended family, friends, PIR and industry colleagues who already have been so supportive on my own journey kicking the crap out of my cancer!