I Am Not My illness is a series highlighting people living with complex disorders and their self-identity, passions and interests.
Eric Seidlitz, as told to Nicole Naimer
Being a bit unusual has been a common theme in my life – my educational path, my cancer and my outlook on life, all a bit unusual.
I went back to school at age 40 to get my PhD. I spent 35 years in basic sciences, 18 of those studying cancer. Some would have called me a lab monkey. When I started teaching at McMaster University, I realized teaching is sort of my thing so I switched to doing that full time.
I live with my wife and two sons.
In 2019, things started to turn south. I started having pain in my neck. I was referred to an Internal Medicine physician, and instantly she said, “you need a CT scan right now.” I was worried because I had to teach in half an hour.
I got the scan and made it to the lecture hall on time, but that evening I got a phone call from the physician telling me I had to go to the ER immediately because there was a high chance I’d stop breathing. The CT scan showed I had an 8.5-centimeter-wide tumour in my neck and my trachea was moved to the side. I was referred to the Cancer Centre in Hamilton, where I had worked for 18 years. They said you need surgery, which took place a few weeks later.
After the surgery, I instantly felt relief from the constant pain. I looked at the clock – what was supposed to be a one- or two-hour surgery had taken six. My wife burst into tears when I said “hello.” The surgeon had told her that he was unsure if I would be able to speak due to my vocal cord damage during the surgery. Thankfully I can speak, but my voice will never be the same again.
This was when my world view started to change.
The diagnosis was the one I wanted the very least – anaplastic thyroid cancer, stage 4. The median survival is three to six months without treatment. I decided on palliative radiation and chemo to slow it down; I was told there was no chance of stopping it, so slowing it down was what I settled for. Before starting radiation, another scan showed the tumour had completely grown back just one month later.
I knew all the oncologists well; back in my research days, we had lunch together in the cafeteria, met in the halls and collaborated on committees. I kept my eyes wide open during the radiation, fascinated by the complexity of the machine and how the beam changed shape as it went around me. I was that annoying patient who would explain the mechanism of the chemo drug while getting an infusion.
I was told that I was unlikely to make it to May or June (it was January), even with treatment. I bought my gravestone and thought of the slogan I would put on it. I toured venues with my wife for a funeral party. I thought if I’m going to do a big blowout funeral party, then I’m going to want an open bar and I’m going to want to be there! This may sound strange; not many people plan to attend their own funeral party but that’s part of what makes me unusual. The party would take place once we knew I was in my final weeks.
Luckily, things turned. The head of radiation oncology was jumping up and down when he saw my results. Then I heard the words “You’re in remission.” This was professionally weird, totally unexpected and factually very abnormal for this kind of cancer, but I’ll accept weird any time.
I get scans every three months to check my lungs, neck and brain, the spots where this type of cancer usually returns. The cancer is well known to resurface; it does for almost everyone. That’s why I’m going to do things I enjoy now instead of putting them off.
When I was given the task of writing my final chapter, I was defining who I was rather than letting the disease do it for me. It’s very easy to let the disease take over. However, I decided I would drive the bus; I was going to be the one choosing what I was going to do.
Strangely for me, that meant continuing to teach university students. And I wanted to check off items on my bucket list because my bucket was so shallow. In February 2020, the day after my last session of radiation, my family and I flew to Las Vegas. We saw a bunch of shows, I drove a Lamborghini at 200 something kilometers per hour and saw the Grand Canyon. Then things shut down because of the pandemic. Except I got the satisfaction of letting me win, not the tumour.
I knew I needed emotional support to deal with the repercussions of my diagnosis, so I got connected to a psychiatrist. Dealing with a terminal illness is emotionally difficult – who you’re leaving behind; not knowing what your future will behold. I learned from my psychiatrist that it’s OK to be sad. I needed to accept that my prognosis was bad, which was necessary for my own grieving.
I allowed myself to experience the lows before experiencing the highs again.
I truly believe that I am not my illness. My illness was something that happened to me, but I was still under there. I had to come out from under that shadow to figure out who I wanted to be even if I was going to die in a few months.
My life changed significantly when I realized I was in control. I’ve decided I’m going to retire earlier than originally planned so I can scratch things off my bucket list now that it is deeper than before. I know if my cancer returns, I’m going to have a big blowout funeral party and obviously attend it myself.
Being weird, unique or special is all the same. You allow yourself to experience the world differently. I’ve realized I’ve always been that way, it helped me through my cancer journey, discover my self-identity, and become the atypical, unusual and resilient person I am today.
Top photo: Eric Seidlitz on a tour of the Grand Canyon.
Photos courtesy of Eric Seidlitz.
Cover illustration: Sindu Sivayogam