Keep Spinning

Jan 3rd, 2023

I was getting ready to go for a bike ride with a friend when I got the call. I stood on her back porch as my doctor choked on the words, “It looks like you have lymphoma.” The conversation that followed went in one ear and out the other. I didn’t even remember what kind of lymphoma it was and had to call back the next day and ask. I was completely numb with shock as she explained to me the next steps, that she would be referring me to an oncologist and that I should probably get in to see them in the next couple of days.

Six weeks earlier, I’d gotten a swollen lymph node in my right armpit checked out. It had been there for a month or so, and I thought that was strange. I otherwise felt fine and I’m not typically one to run to the doctor, but a nagging feeling told me that maybe I shouldn’t ignore this. Still, I felt silly at that first appointment, like I was making a big deal out of nothing.

“You don’t think it’s cancer, do you?” I asked as I sat uncomfortably on the exam table while the doctor palpated my lump. Despite her warm demeanor, medical facilities were not places I felt at home. I’d rather be in the woods any day. She assured me that no, I probably did not have cancer, but they had to run all the tests just in case. A suspicious ultrasound was followed by a biopsy, which was followed by the news that would turn my world on its head. I had Hodgkin’s lymphoma.

I was 31 years old, and I thought I was healthy. I exercised every day and ate tons of veggies. I didn’t drink a lot of alcohol or smoke. I got plenty of sleep and did all the things one is supposed to do to prevent disease. Despite the lymph node and the tests, I did not expect to have cancer. Every time I’ve had something going on with my body that I thought could be a serious medical issue, it always turned out to be nothing. This was supposed to be the same.

riding with lymphoma
Nauseous but still smiling! The bike was a great distraction and helped ease many of the side effects of cancer treatment.
Evan Gross

“Do you want to call anyone?” my friend asked after I told her the news in disbelief. “No, I just want to ride.” We climbed 1,500 feet to the top of our local mountain, my emotions turning the pedals harder and harder as we neared the top. Anger, sadness, fear — it all powered me to the summit, and as we dropped into the singletrack that would take us back down, I felt it all release from my body. I was conscious of the news I’d just received, but as I navigated rock gardens and swooped around turns, it did not hold me captive. The next morning, I got up early and rode my bike again at sunrise before work. Maybe I was trying to escape instead of facing the truth, but the alternative — to sit inside and drown in fears of the unknown — wasn’t any better.

Over the next few weeks, I always took my bike to my tests and appointments, locking it to my car in the hospital parking lot and hitting the trails afterward. It was something familiar and comforting among the unfamiliar and terrifying. I was poked and prodded, and everything inside of me screamed “I don’t belong here!” as I sat in sterile, windowless waiting rooms. I cried and had panic attacks at appointments. But then I’d burst out the door into the fresh air and sunshine and my bike would be there waiting for me. On the trail, I felt like I could breathe again, like maybe it was going to be okay. I found myself gravitating to mountain biking during that time because I craved the narrow focus required to navigate rocky trails and the feeling of being conscious of thoughts but not dwelling on them. I could find a state of flow, even in the midst of the chaos that was life with a cancer diagnosis.

A few days after getting that fateful call from my doctor, I did my first and probably last century of the year. The dichotomy of thoughts in my mind during that ride struck me — I felt good, better than I had on most recent long rides, and yet I now had the knowledge that there was something terribly wrong with my body. I marveled at how my legs could turn the pedals for over 100 miles and 9,000 feet of climbing on the hottest day of the year so far while there was cancer growing inside of me. But I also was angry. I felt like I’d been betrayed. I tried to treat my body well and it had turned on me. I thought I was healthy. How could I have been so wrong? What did I do wrong?

biking with lymphoma
This fall has been about healing physically and mentally, in the woods on my bike.
Benjamin Swab

As someone who struggles with anxiety, especially in situations in which I lack control, I found myself spiraling. Hodgkin’s lymphoma is a very curable cancer, but chemotherapy has plenty of side effects, some of which can be long term or permanent — or even scarier, not show up until years after treatment. The internet was a rabbit hole of horror stories, worst-case scenarios, and lists of long-term maladies like persistent fatigue, lung damage, heart damage, early menopause, and neuropathy. What if I got pulmonary toxicity and I could no longer breathe well enough to ride up hills? What if my fingers and toes became permanently numb and I couldn’t control my mountain bike through rock gardens or ride my fat bike in single-digit temps anymore?

As so many people with cancer are facing life-or-death scenarios, these concerns seem trivial and privileged. But to me, exploring by bike and powering myself through landscapes is so much more than just a hobby. There is nothing I love more than spending all day riding my bike. What if cancer and chemo permanently robbed me of the physical ability to do that? I was scared of facing the permanent loss of my lifestyle, of big dreams and big rides, of feeling healthy and strong. I wasn’t scared that I was going to literally die, but the loss of ability to do something so important to me would be like its own form of death.

Just as it had helped me navigate those initial few weeks following my diagnosis, the bike was a healing tool to help me through the trauma of cancer treatment and all those fears about the outcome. From the beginning, I made it a point to ride almost every day and focused on consistency. I was tempted to try to ride longer distances to push my body and my limits the way I was used to, but I decided that I would rather ride a little bit more often instead of exhausting myself on one big effort. I knew that if I had to spend several days being sedentary and recovering, my mental health would suffer. Building or maintaining much fitness was futile, as any progress I made between rounds of chemo was knocked back down by the next cycle, but I also didn’t want that to be an excuse to just give up on trying to stay fit. I knew the importance of continuing to ride, not only for my mental health, but my physical health as well. Learning that exercise can help mitigate some of the side effects of treatment and potentially improve its efficacy sealed the deal on my commitment to make it a non-negotiable part of my routine, even when I didn’t feel like it.

riding with lymphoma
A sunrise ride on chemo mornings always helped ease my mind.
Helena Kotala

In a stroke of luck, my husband happened upon a great deal on a used da Vinci tandem that he picked up the day after my first chemo treatment. That particular morning was especially rough for me, but by afternoon, I was hanging onto the back of this two-wheeled wonder machine as we flew down gravel roads in our local state forest in central Pennsylvania. I grinned from ear to ear as I watched the trees fly by in blurs of bright spring green. Not being able to see straight ahead or be in control of the bike was slightly terrifying sometimes when we got rolling really fast downhill, but it was also exhilarating and freeing.

As each round of chemo rendered me a little weaker, the tandem ended up being a great way for my husband and me to still ride together without him needing to wait for me constantly, and for me to still do some longer rides that I would physically have had a hard time doing solo. While endurance was normally my strength, I could no longer trust my body to do what it used to and keep pushing when I was already tired. It was a tool to ride with friends more than I would have on my own too. Though it was entirely expected, it was hard to not feel embarrassed or upset about how much slower I got once I started chemo, and riding with others provided an unwelcome measure of comparison. With my partner picking up some of my slack, we could keep up more easily.

Bike rides also ended up being the main way I experienced in-person connections with anyone besides my partner during my time in treatment. I had to be really cautious about socializing because my immune system was suppressed from chemo, which made treatment feel a bit lonelier than I expected despite an amazing support system. In some ways, it was reminiscent of COVID lockdown times. During the spring of 2020, my bike was a trusty companion to navigate the uncertainty of a global pandemic, and it was the main way I socialized back then too. While I was even more cautious this time around because I knew that I was severely immunocompromised, being able to see a few of my closest friends and share an activity we enjoyed together supported my mental health. Even before cancer, a lot of my socializing was done on the bike, so while I had to change the way I rode with others, continuing to do so occasionally provided a small glimmer of normalcy.

riding with lymphoma
In the middle of my longest ride since starting chemo, one month out from treatment. My eyebrows are barely there, but my strength is definitely coming back!
Helena Kotala

Not only did chemo make me more vulnerable to severe illness from pathogens such as COVID and other viruses, it made me susceptible to infection from any source, such as food or cuts. After my first session of chemo, my white blood cell counts dropped into the “severe neutropenia” category (neutropenia means very low levels of a particular type of white blood cell) and ended up staying in that range for the rest of treatment, which meant that I had to take a lot of extra precautions. There was a list of foods I couldn’t eat, including any raw fruits or veggies. I had to avoid getting any wounds. I had to take my temperature several times a day, and if it ever went above 100°F, I had to go to the emergency room immediately because “any infection could be life-threatening,” I was told.

This was terrifying news. I knew that chemotherapy caused immunosuppression but not to this extent. The thought of my body having very little of its own defenses caused my anxious brain to spiral once again. Is it even safe to go for a bike ride by myself? What if I started running a fever out on a ride? How long would it take to escalate into a life-threatening situation? I was convinced that I was probably going to almost die from an infection and that I should probably be living in a bubble.

Although a bubble may have protected me physically, I knew my soul still needed to roam the mountains. Being indoors at home might be deemed “safer,” but it was when I felt most scared. Boxed in, confined to four walls, the “what ifs” ballooned inside my head, tightening my chest and taking over my mind. Outdoors in open spaces, those nagging thoughts dissipated into the wind almost immediately. I’d wake up some mornings and have moments of panic over whatever strange side effects I was experiencing that day, and I’d almost convince myself to skip my ride. But then I would finish my cup of coffee and get on my bike. As soon as I took the first pedal stroke and felt the cool, humid, summer morning air on my bare arms and face, I’d breathe a sigh of relief. I didn’t forget that I had cancer. Most of the time, especially while riding alone, it was all I thought about. But being outside, moving through the landscape under my own power, helped me interact with those thoughts in a different way. No longer did the fears hold me prisoner, tugging at me to stay inside, on the couch, numb with depression, fearful about the future. As long as I was on my bike, I was winning and the cancer was not, because I was still doing the thing that I was so scared of being taken away. The antidote to fear was doing. I was never scared when I was riding, and being on my bike made me feel like I was still me and not just a cancer patient.

riding with lymphoma
Riding tandem with my partner helped me continue to do longer rides throughout treatment than I would have been able to do otherwise. It gave me a sense of normalcy and him some extra strong legs!
Shannon Cotrell

As the summer progressed, going to my treatment appointments got harder as the side effects grew worse and my entire body started anticipating the way I’d feel. I could taste the saline and chemicals and my stomach would turn. I’d cringe at the thought of the giant thumbtack to my chest as the nurse accessed my port. I tried to make it a point to ride before each treatment session, which helped me set the dread aside and put my head into a calmer, more positive space. It was like donning armor, preparing both my mind and body to be strong for what was to come. Much in the same way that my bike helped me get through those early doctor’s appointments when I was first diagnosed, pre-chemo bike rides became the perfect antidote to the hospital-like environment where I’d sit in a chair for hours, hooked up to an IV. Some days, I’d have treatment at 8:00 AM so I’d be in the saddle by 5:30 AM, spinning through the grayish blue morning twilight and watching the first rays of the sun kiss the rolling hills. These were some of my favorite and most memorable rides of the summer.

By the fourth month of chemo, I was a lot weaker than when I had started. The side effects were lingering longer after each treatment session and my legs always felt tired as if I’d ridden a hundred miles the day before. My weekly mileage decreased, and small hills that I’d normally power up without much additional effort began to feel like huge mountains. Some days, I didn’t want to ride because it was a reminder of how weak I’d become. But once I got out there, I didn’t care how slow I was going or how tired I felt. I was still doing a mix of tandem and solo rides as treatment progressed, my solo rides just got shorter and easier. I needed those solo rides. The tandem was fun but I also needed the headspace of going out by myself. I missed feeling strong, but the mental benefits remained the same no matter the distance or speed.

There are a number of physiological reasons why riding a bike makes us calmer and happier. “Optic flow,” or viewing the movement of objects past us when we ride, quiets some of the circuits in the brain that are responsible for stress. Optic flow can be generated by walking or moving in other ways too, but it seems there’s something about the speed of the bicycle that is especially relaxing. Being outside and breathing fresh air helps regulate levels of serotonin. Sunshine increases vitamin D levels, which boost mood (and as a bonus, the immune system). Getting plenty of natural light during the day, especially in the morning, helps regulate sleep, which in turn plays a huge part in the ability to control emotions. And of course, exercise releases endorphins that help reduce anxiety and depression and enhance a sense of well-being.

riding with lymphoma
This DaVinci tandem was a fun addition to the bike fleet, just in time for the start of treatment.
Evan Gross

The bike served a number of purposes for me throughout cancer diagnosis and treatment. It allowed me to escape the panicked uncertainty of those first few weeks of being poked, prodded, and taken on a roller coaster ride of tests and next steps, but it also gave me space to work through my fears and have a healthier relationship with my thoughts on even the darkest days. It gave me a sense of empowerment and purpose when I felt weak, afraid, and out of control. Riding was a way to maintain social connection and my sense of identity. I joined a Facebook group for my specific type of cancer and engaged there a little, but to be honest I mostly just wanted to go about life as normally as possible and not be defined as a cancer patient. Riding was something that felt both the most and least normal all at once — I could really feel the effects of treatment as I felt weaker and weaker but riding always made me feel like myself.

And while there’s no way to prove it for sure, I believe without a doubt that continuing to ride my bike through treatment helped me to avoid some of the worst side effects and have a better outcome. Two months into treatment, my interim scan showed that I no longer had any evidence of lymphoma, and I will get to spend this fall celebrating being cancer-free.

As I wrap up treatment and move on from this chapter of my life, I know that I’m not putting cancer behind me entirely. I’ll still have regular checkups and scans, and I know that fears of recurrence will be my reality at least for a while, if not always. But I also know that my bike will be there to help me through, no matter what happens.

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