MY CANCER WON’T STOP ME FROM GETTING OUTSIDE
Despite her diagnosis, reporter still wants to share her outdoor adventures
This time last year, I didn’t think it would be an oncologist who would be shocked at the next outdoor adventure I had planned. I didn’t think that adventure would just be hiking, and I didn’t think I’d be questioning it myself.
I also didn’t think I’d be battling a cancerous brain tumor a few weeks after I turned 31.
It was my last day of a six-week round of radiation and chemotherapy treatments, and my doctor had asked if I was going to celebrate.
Other than popping open a beer for the first time in months, I wanted to do what I love most: get outside.
“Most people are dragging their feet in here at this point, and you want to go hiking,” my doctor said, smiling as he reviewed my blood cell counts, which were thankfully still in the OK range.
The six weeks of treatments had left me fatigued, but I was blessed they hadn’t completely decimated my body. I had enough energy to let my mom drive us a few hours south for a weekend in the woods.
Three days after that appointment, we stepped onto a trail at Illinois’ Starved Rock State Park and breathed in the scent of pine trees and wet leaves.
“It smells so good,” my mom said. After months of sniffing hospital antiseptic, it smelled more than good. It smelled like hiking around Holy Hill in the fall, raking leaves at my family’s cabin up north and hundreds of nights spent in my sleeping bag. If I could bottle everything that makes me happy, it would smell like that.
I realized I hadn’t just wanted to go on this hiking getaway — I needed to. And not just because nature had always been my place to … ahem ... clear my mind.
I needed to prove to myself I still could do what I did before August, when I had a seizure and doctors found a tumor in my brain.
I have a strong faith, and God had given me great peace about a situation I knew I couldn’t control. I wasn’t angry, anxious or afraid of dying.
But I was afraid of not living. I was afraid of not being able to do what I love: romp around outside without thinking twice about it.
Invincibility cloak
I had led a charmed life before my diagnosis.
When I had my seizure, I was about 10 seconds from driving, but the car was still in park. I wasn’t alone, as I often am when I’m traveling. My younger sister, a nurse, was there, along with cousins who stayed as calm as she did and called an ambulance to get me to the hospital.
Doctors found a large mass in my brain, and within 48 hours I was on a surgical table watching — yes, I was awake for part of the surgery — as surgeons removed 90% of Timmy the tumor (so christened by another cousin). Less than 24 hours later, I left the hospital with a swollen face only a mother could love, but my physical and mental faculties intact.
I had been smacked upside the head with a life-altering diagnosis, but I could still walk, talk and make tumor jokes that were criminally under-appreciated by my family.
I was, and still am, thankful for being in the best of a bad situation. In the immortal words of Bill Withers, “Sometimes in our lives we all have pain / We all have sorrow,” and mine isn’t so bad.
There is a standard treatment for my tumor that has been keeping other patients alive for decades. I have an incredible medical team treating me and an otherwise healthy body that has handled the treatments well. All those stupid salads I’ve eaten for years are finally paying off. And any day you’re considered young in your thirties — especially as a woman — is a good day. If I can ride that train into my forties, I’m on board.
I have an army of family, friends and coworkers supporting me, and a great job with health and disability insurance to help me pay the bills. I don’t have children, so I only have to worry about caring for myself.
I can deal with the scar from surgery that will permanently hug my hairline on the right side of my face. I can deal with patches of hair I lost from radiation. I can deal with the endless doctor appointments, scans and pills. I can deal with physical pain: I transitioned from being a contact-sport athlete in high school to a glutton-for-punishment backpacker after college. I know how to grit my teeth and push through pain with a few choice curse words.
A harder pain to push through is the fear of how this cancer might change what I do outside.
When I was healthy, the outdoors never scared me. I wasn’t exactly scaling Everest, but I loved doing the kinds of adventurous things that keep parents awake at night.
Whitewater rafting without a guide? Sign me up. Kayaking dozens of miles across cold, fickle Lake Superior? Sounds awesome. Pitching a tent on snow in 20-degree temperatures? I’m in.
Before cancer I had that special feeling of invincibility that belongs to the young.
Now that invincibility cloak has begun to fray. A headache I would ignore before could land me in the hospital. Same for a stomachache or a bad cut. Being out of cellphone range isn’t a goal anymore — it’s the enemy. Since I’ll always be at risk of having another seizure, it would be unwise to go backpacking or kayaking alone again — something my mom is no doubt happy about.
I don’t know what my new physical limits are, or what they’ll be a few months from now. The line between reasonable risk and foolish recklessness has shifted, and I’m still trying to map it.
Risky business
About a month before my seizure, I backpacked the Four Pass Loop in Colorado’s Maroon Bells-Snowmass Wilderness with my sister, her husband and a couple friends. The four-day backpacking trip took us over four mountain passes above 12,000 feet.
Before the trek, we acclimated for a few days, made sure we had the proper gear for the conditions, and planned our route. No matter what happened on the trail, we felt like we were prepared to deal with it.
The first neurologist I saw said I probably had the tumor while we were hiking. It was so big, it had been making itself at home in my head for a while. The doctor was surprised I hadn’t had a seizure on our trip — hyperventilation can sometimes trigger them, and hiking up and down mountains is a hyperventilation sufferfest.
Despite my sister being a nurse, there’s not much she or anyone could have done if I had a seizure 20 miles into the backcountry. But when you’re young and healthy, ominous thoughts like that never cross your mind. Our biggest fear was getting over the mountain passes before thunderstorms rolled in.
After we finished, my sister and I talked about our next adventure: climbing a Fourteener (a mountain above 14,000 feet).
But now that I have cancer, those more ominous thoughts are top-of-mind. Can I physically do something like that? Can I expose my brain and body to thin air and punishing climbs? Can I risk having a seizure in the middle of the wilderness, miles from help?
A few weeks after my diagnosis, as I wrestled with those questions and burned through my Netflix queue while on leave from work, I did that thing you’re not supposed to do when you have a health problem: I started Googling.
This search story has a good ending, though. I read about Trevor Thomas, a man who lost his sight in his 30s and went on to hike some of the country’s longest scenic trails. I read about Andy Lyon, who sought healing for a terminal cancer diagnosis on the Pacific Crest Trail. I read about a woman with my cancer, but a grade higher, who snuck in backcountry treks between five bouts with the disease.
There were plenty of people living with chronic conditions worse than mine who were tackling big challenges every day. I had never backed away from a challenge before — I’m not going to now.
So my mom and I went to Starved Rock to test my tumor trail legs. We hiked more than five miles in and out of canyons sprinkled with the season’s first snowfall. And guess what? I was fine. I was a little sorer than usual, but I did it, and I was still the one leading us down the trail. My mom claimed since I was getting better every day and she was getting worse (older), I still had the advantage when we hiked together. Never mind that I had just undergone six weeks of brain bombing and body poisoning.
But I was back on the trail, and it felt good.
A different trail
A few weeks after I tackled the trails at Starved Rock, I slid a bicycle helmet over my surgery scar and rode 10 miles through December rain during Milwaukee’s annual Santa Cycle Rampage. In January I’m going to ski and snowshoe in the Driftless Region. If I still feel good in February, I’ll be back in my tent in the snow.
Things are different now, of course. The Fourteener might have to wait a little while. I’ll have to carefully plan my trips and squeeze them between ongoing chemotherapy treatments, MRI scans and doctor appointments. For my family’s peace of mind as much as my own, I’ll need to consider things like getting a satellite communication device and always travel with someone.
Maybe I’ll be more tired and will have to hike shorter distances, or maybe I’ll have to avoid backcountry bathrooms when I’m going through chemo and my white blood cells need a break.
As my life has begun to return to a new normal, I’ve come to see cancer like I do backpacking. It can be painful and arduous, and you can’t control everything that happens — bad weather, gear breaking, an injury — but you can control how you react. When you’re tired and want to quit, your options are to stop and be stranded in the middle of the wilderness, or to keep putting one foot in front of the other. You focus on taking each step, no matter how slowly, and you reach the end of the trail eventually.
I’m not scared of when the end of my trail might be. I have a life full of love and joy.
Usually I hate platitudes, but since I’ve already dropped a few clichés in this story, here’s one more my mom and I have latched onto since I was diagnosed: Don’t let the fear of tomorrow steal the joy of today. That whole carpe diem thing. None of us know what’s going to happen in the future. We’re alive and able to do something today.
Today, I feel good. And each day I wake up feeling like that, I’m not going to waste it worrying about how I’ll feel tomorrow, next month or next year.
Scans show the treatments are working. I’m not back to 100% invincibility level, and I probably never will be again. There’s no cure for my type of cancer — yet. But today I’m alive, I’m happy and I have about a year’s worth of tumor jokes to share on the trail before my friends and family forbid me from telling them.
Timmy the tumor and fear of the future won’t stop me from doing what I love. Don’t let your fears or limitations stop you, either.
Chelsey Lewis is a travel writer at the Milwaukee Journal Sentinel. Her On the Road adventures took her to every county in Wisconsin in the summer of 2017.
I’m not scared of when the end of my trail might be. I have a life full of love and joy.
I was, and still am, thankful for being in the best of a bad situation. In the immortal words of Bill Withers, “Sometimes in our lives we all have pain / We all have sorrow,” and mine isn’t so bad.