Beginning of the Upcoming Book
Long Ride: Cycling 4,000 miles with stage 4 cancer
by Steven R Malikowski
Chapter 1: Only 3 Years
Friday, 22 September 2017
“You have every reason to think that you’ll live longer than average.” Dr. Carrington told me while I sat in an exam room next to Sara, my partner.
“What is the average?” I asked with gentle firmness.
I looked away and leaned back in my chair. I was 51 years old, had ran a few marathons, and loved cycling for 100s of miles. The idea that I would live for three years wasn’t unexpected. It was unimaginable.
Until a year ago, all I knew about the prostate gland is that only men have it. Since being diagnosed with prostate cancer, I’d learned a lot more. For starters, it’s most active when men are having a really good time, during sex. Now, it felt like that stupid little sex gland was going to kill me in three years.
She brought me back by firmly repeating, “But you have every reason to think that you’ll live longer.”
I barely heard the words. Sara’s hand gently held mine. We’d been dating for about a year. I’d been diagnosed with cancer soon before we met, and it kept getting worse. I was impressed that she stayed with me. She was a successful technical writer, in downtown St. Paul. I’d often meet her downtown, and we’d enjoy the city together.
My face tightened up, and tears fell down. Emotions were harder to control because of the cancer treatment I was already on. Prostate cells must have testosterone, whether they’re healthy or cancerous. So like most guys in my situation, my testosterone was shut off soon after I was diagnosed.
There are a few symptoms of having no testosterone. You might guess the first one. My sex drive fell to nearly nothing. I’d sometimes joke that if a dozen supermodels were wearing bikinis in front of a new bike, I’d ask them to get out of the way, so I could see the bike.
Other symptoms of having no testosterone are similar to what women go through during menopause, like hot flashes. I have three sisters, and they’re all older than me. After my testosterone was shut off, I texted them with a question, “Could you give your little brother tips for dealing with menopause, especially hot flashes?”
I learned how to manage those symptoms well enough, but the symptom that stayed out of control was more emotions, mostly sad ones. I’ve always been one of those sensitive types, enjoying theatre and literature and being bored by trucks and football. But without testosterone, I’d become a guy who cried too quickly. Some people can let tears roll down and barely change the look on their face. Sometimes, they even show more compassion or sincerity with those tears. I don’t know how they do it, but I envy them.
Maybe they’re just stronger or calmer than me and feel no shame or indignity in tears. Maybe they’ve finished the hard work of resolving unsettled emotions and accept that tears are part of being a decent, vulnerable human. The people I’m thinking of have all seen hard times, but maybe they haven’t had to accept that their flawed yet wonderful life could end in a few short years.
I still hoped to cycle across more countries, write more stories, and help more people. I still hoped to feel deep love again since I’d only felt it once, in London. I still had family who called me Little Brother. I was the youngest, and it felt like I would go first. I was nowhere near accepting that. It was too sad, and the process of my strong body fading was too scary. Each tear told me I must accept all that, so I fought each one with everything I had. I usually lost the fight, and when I did, the indignity made me cry more.
These thoughts are part of my emotions getting out of control. Fears and frustrations spin around in my head. I wanted them to stop, to focus, and ask Dr. Carrington some questions. But when I tried, my voice wavered, choked up, and the words stopped. I’d been a professor at the University of London who gave lectures to hundreds of medical students in an auditorium, but now in this small office, I couldn’t even talk.
More tears came down, and the amplified emotions convinced me there was no hope. Sara held my hand tighter, and Dr. Carrington handed me a box of tissues. I tried talking again and failed again, a few times. Finally, I found a short question that mattered and forced it out.
“What can I do?”
After asking, I realized the question had a few meanings. It could ask what I’d be capable of as a man with advanced cancer. It could ask what life would be like during my few remaining years, or it could ask how I could fight. I didn’t know which meaning mattered. Maybe I was also asking Dr. Carrington to decide, which she did.
“I can give you clear clinical data that people who embrace life live longer. You need to get on your bike.”
Her answer impressed me. She knew I valued clear and careful research, came from having been a Lecturer and running a research group. And like anyone who knew me, she knew I loved to cycle. Sara gripped my hand harder for a moment.
The tears slowed and more words came out. “I’d do that anyway. What else can I do?”
“Give yourself some time to take this in. We’re going to review your test results with the Mayo Clinic and find the best treatment.”
I felt certain that the best treatment would be chemo. I’d never had it, but I knew enough that I’d be sleeping and puking instead of cycling and laughing. I’ve never been good at sitting still, so lying around and throwing up a lot worried me. It was even worse since laughing and cycling are two parts of life that I enjoy most. Overall, chemo felt like it would be months of what I was worst at without the joy of what I was good at. And during those months, my emotions would continue to flare up as they already had. I suddenly wanted to leave, so I thanked Dr. Carrington for her answers, stood up, put on my coat, and collected my pen and notepad.
“Steven,” said Dr. Carrington.
I faced her. She stood up and gave me a hug. The damn tears kept coming.
I appreciated that she didn’t repeat the part that I should expect to live longer. She already said that. I understood, but right now, I couldn’t fight the tears and had to let them out. Dr. Carrington knew that.
I still had to get out of there, so I walked to the door, and Sara followed. Before walking out, I paused, turned, and thanked Dr. Carrington again. That was purely instinct, maybe manners or dignity.
~ ~ ~ ~ ~
Sara and I walked to her car. I don’t clearly remember what happened after I got inside the car. My best memory is that I lost control for a while, crying and talking about the worst possibilities. She drove us away from the hospital, listened, and cried with me.
After the tears slowed, she asked a simple question. “What do you want to do now? We could go to my place, yours, or anything else.”
Without thinking, I answered, “I want to go to Sue’s resort.” My sister Sue owned a small resort with her husband. It was closed for the season, but after hearing my news, I was certain she’d give us a cabin for the weekend. I sent Sue a text. “I just learned that my cancer is worse, might only have a few years. I’d like to get away for the weekend. Could Sara & I stay in one of your cabins?”
About a minute later, she replied. “Of course.”
We drove to each of our apartments and quickly packed. While tossing clothes into a suitcase, I felt relieved that we were getting away for the weekend, which felt like I was getting away from cancer. Even if it was a false or temporary hope, I needed the respite.
The sun was setting as we drove north, which helped me relax. Sometimes, I talked more calmly about this new lifestyle. Sometimes, I cried, and other times, we just watched the countryside change from the city, to farmland, to the forests of northern Minnesota. During one of my calm moments, I sent a similar text to my other two sisters and to my brother. “I just learned that my cancer is worse, might only have a few years. Sara & I are driving to Sue’s resort for the weekend. Could you stop by? Hope so.”
Within minutes, they all said they’d be there. After reaching Brainerd, we stopped at a red light and saw a grocery store. Sara asked, “How about stopping at that store? We’ll need some things for the weekend.” She smiled a little and added, “like coffee and maybe even bran muffins.”
She knew I loved both. I smiled back and replied, “Now, you’re just trying to turn me on.”
“Good,” she said. The light turned green, and she drove toward the store. I normally go to large grocery stores because I live in a large city. Brainerd is a small city, so the grocery store was smaller than what I’m used to, which felt much more personal. Even the signs showing what was on sale felt more personal. Instead of large signs with elaborate pictures of the apples that were on sale, there was a handwritten sign saying, “Tasty apples, 5 for a buck.”
“I need to buy some of those apples,” I said to Sara.
“But you don’t really like apples,” she replied.
“With a cute sign like that, I’m going to like apples.” We picked out five apples, with little jokes about how the other kept picking a much better apple. We chose other groceries in a similar style, until we turned a corner, and I heard her say, “The next choice is all yours.”
The coffee section was in front of us. She knew that I loved looking at all the different beans, blends, and flavors. I smiled, quickly stepped closer to the shelves of coffee, and looked for the best options. “Folgers, yum,” I said touching the label. “But we also have Maxwell House, and look, a generic brand.”
“Well, we are in a small store,” said Sara.
“Yes, we are, and I’m thoroughly enjoying it.” I grabbed the generic brand and dropped it into the cart.
“All we have left to get is muffins,” Sara said, “and just in case they don’t have your bran muffins, we might want to think about a backup plan. What else might work?”
“Any muffin where the dough resembled cement mix. I like hearty muffins.”
I pushed the cart toward the bakery section, and the first muffins we saw were bran muffins. “I’ve always liked these small-town grocery stores,” I said while putting a box of muffins into our cart.
After driving away from the grocery store, we talked about the beauty of the lakes at sunset and laughed at the important little things in our lives—like her cat, my bikes, and our family and friends.
I still felt the shock of having advanced cancer, of living about three more years. It was like getting used to being a different person, one of the unlucky ones. The initial shock had faded during this drive, by getting out of the city and talking with Sara. More shocks would come in the next few days. I hoped the cabin, my family, and more time with Sara would make those shocks fade too, but I really didn’t know.