I have a form of Non Hodgkin's Lymphoma that I know is coming back. Fortunately, I made it through treatment in one piece and have been in remission now for almost three years. Along the way, I experienced almost every emotion imaginable and learned a few things along the way, including how to live with cancer vs. the constant debilitating fear it can create. While the memories were still fresh, I wrote down many of my thoughts in a book titled, Fuck! I've Got Cancer. I know the title isn't for everyone, but the reality is that when you get that news, that's what goes through your head. For those who can't stand the F word, I also put out a version called Oh Geez! I've Got Cancer. I tried to be as honest as I could about what I was thinking. I believe many of my thoughts are universal for people who get a cancer diagnosis and could be helpful for friends and family members of cancer patients. Below is an excerpt.
Before I got the news, I was a healthy, active 46-year-old guy living a great life in a leafy first-ring suburb of Minneapolis. I had 13-year-old fraternal twin daughters who made being a dad easy, a great ex-wife, Erika, from whom I’d been divorced for three years, a blossoming relationship, and a close-knit group of friends and co-workers I had known for years. I made a comfortable living working as an in-house lawyer for a medical device company. My work was interesting. I loved my company’s mission and my industry’s competitiveness. My colleagues felt more like family than co-workers. I had managed to find that elusive work-life balance.
My body was in constant motion—walking around one of the many Minneapolis lakes, skiing, biking, kayaking, hiking, and traveling. I never turned down an invitation to grab a burger and a beer, and I ate out way more than I ate in. Except for the breakup of my marriage to my high school sweetheart, life had been easy.
I had lived in the same grey two-story Colonial since my girls were kicking each other inside their mom’s belly. My neighbor, Diane, is 20 years older than me and lives two houses down the street. She’s lived in the neighborhood forever. Diane is funny, smart, opinionated, and quirky, with an eclectic background. She grew up with the privilege of old Kentucky oil money, but that blessing came with a lot of dark family secrets and pain that she’s still working through. She has kind eyes and a warm smile and always stops to talk with whoever happens to be passing by while she walks Snoop, her black-and-white papillon.
After my divorce, Diane started regularly checking in on me, asking how I was doing. She’d gone through her own divorce 10 years earlier. But it wasn’t until she saw the techno blue VW camper van parked in my driveway that we really got to know each other.
Given my love of travel and my restless nature, I bought my camper van as soon as COVID hit and people started talking about lockdowns. I was a big fan of road trips and didn’t want to get stuck without a travel outlet. Unbeknownst to me, Diane had also been thinking about buying a camper van, and the two of us bonded after learning of that connection. We began walking together at least once a week.
About four months after I bought mine, Diane rolled up to her house in a shiny white Mercedes camper van of her own. An older guy and his wife had bought it new the year before, with plans to live out their retirement dreams by driving it around the country. Unfortunately, the guy’s wife was diagnosed with brain cancer right after they bought it, and her cancer quickly took her life and the couple’s dreams with it.
Despite our age gap, Diane and I had a lot in common, and conversation came easily. We talked about our kids, upbringings, travel, money, values, neighbors, neighborhood, and relationships. We also disagreed on issues large and small, and loved to kid each other about how differently we approached things. Diane was a free spirit but cautious. I liked to dive headfirst into everything, willfully ignoring any potential downsides. Diane would advise me to give myself some time before jumping right back into a new relationship after one ended. I would quickly shrug off her advice and charge forward anyway.
Two weeks after Diane bought her camper van, I saw her at the end of my driveway as I was about to run a few errands. As I walked down the driveway, I could clearly see she was shaken. Without wasting any time, she told me she had just been diagnosed with breast cancer. I didn’t know what to say. My eyes welled up as I saw the tears building in hers. I told her I was sorry and let her know that I was there to help. She was scared, and said she hoped she’d be alive in a year. The conversation didn’t last more than a minute or two before I left. As I was driving down the street, I felt awful for not giving her a hug. This was during the early stages of COVID, when no one was touching anyone. A hug felt out of the question. I replayed that scene over and over in my head and wished for a do-over.
The two of us started walking together more frequently after that. She shared a lot about her cancer journey, including all the tests, appointments, and decisions she needed to make. That was my first real glimpse into the life of someone living with cancer. It looked different from how I thought it would look. She seemed like the same person as before, albeit with a lot more on her mind. She didn’t suddenly turn into a wiry, paper-thin person who spent hours hanging over a toilet bowl throwing up, which was the image that came to mind when I thought of cancer patients. I was surprised she wanted to walk after returning from her first chemo appointment. She seemed the same as ever.
In August 2020, my girlfriend, Carla, and I were planning to take a trip to Glacier National Park. A few months before the trip, I noticed some significant swelling near my pelvis. After doing a little research, I was pretty sure I had a hernia. Knowing that we were going to do a lot of hiking, I made an appointment with my general practitioner the week before the trip to make sure my intestines wouldn’t explode somewhere in the Montana backcountry.
My doctor examined the area around my pelvis and groin and confirmed that I had what appeared to be two hernias, as well as some swollen lymph nodes. He ordered bloodwork and an ultrasound and said he’d get back to me with the results in the next day or two.
For the next several days, my doctor and I played phone tag but were never able to connect. Then, as I was driving to a friend’s house for a barbeque, I finally got a voicemail from my doctor saying he had looked at my labs and ultrasound images, and there was Nothing to worry about per se. I was cleared to go hiking and when I returned home, I should follow up with a surgeon to get my hernias repaired. At the barbeque, my friends and I all had a good laugh at my doctor’s use of the phrase Nothing to worry about per se, and how that would make for a great episode of Curb Your Enthusiasm.
The next day, Carla and I set off in my camper van for Glacier. Other than needing to find a repair shop in the middle of Montana to fix a leaky radiator, we had an amazing trip without a care in the world.
When we got back from Glacier, I booked an appointment with a surgeon to repair my hernias, which included a pre-operative ultrasound. After reviewing the ultrasound images, the surgeon told me that actually I didn’t have a hernia, and there was no good explanation for my swollen lymph nodes given my overall good health. He said the swelling could be lymphoma and that we would need to do a biopsy. Even though he was wearing a mask, I could tell from his eyes and tone that this was serious.
It’s astonishing how quickly even the threat of cancer can make you change what you wish for. One minute I was researching what type of hernia surgery would be best, annoyed at the upcoming need to take it easy after surgery, and the next minute I was praying I had HIV. Anything but cancer.
And I’m not kidding about HIV. After learning I might have lymphoma, I went online to research other potential causes of swollen lymph nodes in the pelvic region. One of them was HIV. I was no Wilt Chamberlain, but after my divorce I’d had a few periods of casual dating, so I wasn’t exactly the Virgin Mary either. How great would it be if I didn’t have cancer but only HIV! Such an easily treatable disease! Sure, it would require a few difficult discussions, but I wouldn’t die, and my life could remain pretty much unchanged. Just look at Magic Johnson!
On the Friday before Labor Day, the hernia surgeon called with my biopsy results. When I saw the incoming call from the clinic on my phone, I walked out to the porch to get some privacy from my girls. Based on my earlier visit I was prepared for bad news, but when I actually heard the word cancer, I felt the world close in. So many unknowns and one big, shitty known. I felt sick. I took notes as best I could. Non-Hodgkins lymphoma. Mantle Cell. A lot going for me. Young. Healthy. Good treatment options. It’s a blood cancer. Nothing to cut out. Mantle Cell patients often live for many years. Five-year survival rates.
What the fuck? I may not be here in five years? My God. My girls. I was getting nauseous. I was somewhat calm, but definitely in a different state of consciousness. Appointment with an oncologist on Tuesday. World falling apart. My girls. Why now? What the fuck am I going to do? Am I going to die? Why me? Stop your bitching. Kids get cancer. You’re 46 and have lived plenty. But the girls are so young. Shut the fuck up. It could be way worse. Be grateful the girls aren’t younger. They know me. Their memories will fade, but they’ll never forget me. I’ll have left my mark. What’s treatment going to look like? Am I going to endlessly throw up, turn into a skeleton, lose my hair, and feel like shit all the time? What’s going to happen to my life? So scared. Sad. It’s okay to be confused. Thank God for Erika. The kids will be okay. She’ll raise them right. Thank God I don’t have to worry about money. The kids will be okay. Fuck, they’ll be better off financially if I die. Life insurance, house, college fund, retirement account. But I don’t want them to be trust fund kids. Erika will keep them on the right path. The kids don’t deserve this. They still need me. I have so much more to give. Glad I have always really lived and didn’t piss my life away. What now? My brain was in hyperdrive. Sheer panic. Need more information but I’m not going online. Fucking cesspool. Probably shit myself looking at that right now. Need to get things moving.
I started making calls. I let Erika know. I called Carla. I called my friend and his sister who works at the Mayo Clinic to try to line up the best doctor I could find. I called my parents. My poor mom. This will destroy her—break her heart. I’m not supposed to die before my parents. Why am I doing this to them? It’s not my fault. The thoughts going through my head were next level. Like nothing I’d ever experienced before. I couldn’t think about anything else. Am I going to be in this state forever? I don’t feel like the same person I was a half hour ago. Am I going to lose that person forever? I like that person. When do I get to be that person again? Do I get to be that person again? So afraid. Strong but scared. I just want to be me. I just want to be me.
The days after getting diagnosed were tough. I couldn’t sleep. I couldn’t focus. I lost 20 pounds in a matter of weeks. Fortunately, I didn’t lose myself entirely and I started feeling like myself again, at least for the most part, about three weeks later. What turned things around was getting the information I needed to develop a plan, so I could figure out what to do and tell those around me what I was dealing with.
My neighbor, Diane, was scheduled to undergo weekly chemo infusions for four months, with surgery to follow. By the time I got the phone call that I had cancer, Diane had already finished her second round of chemo. Within a few hours of learning I had cancer, I spotted Diane outside. She was still feeling well and was packing for her first overnight trip in her camper van. I walked over and said, Well, I’m now part of your shitty club, and shared what I knew. Her eyes told me she understood what I was feeling. We were in this together now.
I quickly learned that what I needed most was information. After processing the bad news for a few hours, I looked at my notes and replayed the phone call in my head as best as I could. Non-Hodgkin’s lymphoma. Blood cancer. It spreads through the lymphatic system, causing lymph nodes to grow. It’s treatable. There’s nothing to cut out, and it’s treated with chemo. It’s not the worst kind of cancer. My particular kind of non-Hodgkin’s lymphoma is called Mantle Cell, which is less common. My age and fitness level work in my favor. People often go on to live for many years. Stay off the internet because most of the information there will just create more confusion. If I must go on the internet, look at the National Lymphoma Society website.
The clinic that performed my biopsy also had a cancer center, and my hernia surgeon was able to get me an oncology appointment the following Tuesday. That was only four days away, but it sounded like an eternity. How was I going to survive the anxiety over the long weekend?
To provide myself with a little more information, I did a quick Wikipedia search which described Mantle Cell Lymphoma as an aggressive form of Non-Hodgkins Lymphoma. I saw some five-year survival charts with the odds of being alive in five years somewhere around the 50 percent range. A wave of fear flashed through my body. My head got light. I wanted to throw up. I quickly learned that I didn’t have the stomach for reading that kind of information. I was going to need to keep things at a pretty high level and get more detail from others.
