Chemo During a Pandemic

Chapter One: Hope

Open Hands

I watched the cherry apple tree

blossom

in our backyard--

filmy, white flowers

falling into my open hands,

their petals easily crushed

before the fruit blooms.

On March 13th, 2020, the wind wailed against the siding of our house. The air whistled through any crevice it could find, trying to rip the building apart, and tossing around anything outside that wasn’t tied down. It sounded like the world was either struggling to shake itself out of some terrible funk-- or come crashing down altogether.

I was four days out from my third round of chemotherapy, and all this week the television had flooded our bedroom with images of lab coats, packed hospital rooms, flashing ambulance lights, and long lines of people in gloves and masks at Wal-Mart. I watched in shock, uncertain if the world had gone mad or if I’d just been trapped in some horrible nightmare since my cancer diagnosis two and a half months prior.

“Let me get this straight,” I joked with my husband, “First, I’m diagnosed with cancer out of the blue, and now the whole world’s ending? Wow, I didn’t realize I was the glue holding this whole damned thing together.”

“Sounds about right,” Eli replied, trying to keep his snacks out of sight of our three small children. Our beloved yet messy boys, whose favorites at the time included fruit snacks, blocks, and Nerf guns, weren’t allowed to eat in the bedroom, or to watch much of the news, honestly. It seemed the doom and gloom content of national news was rapidly approaching 100%; I didn’t want my kids to be anxious about adult topics. They were already dealing with a bald, sickly mother; they needed an extra dose of childhood’s happy naivety, in my humble opinion, not the taxing anxiety of the media.

I switched the TV to Disney Junior and made sure the baby was comfy on my lap. For Eli, I put on my best impression of Bill Lumbergh in Office Space: “Hey, if we could go ahead and not do a global pandemic while I’m in my nadir, that would be greeeeeat.”

My husband laughed, and our five-year-old asked what was wrong with my voice.

Humor has always been my escape mechanism-- that, and writing. I’d been painstakingly jotting notes on every hospital test and doctor’s visit since my initial diagnosis at 9 months pregnant on December 30th, 2019. At first, all I could do was record the facts: the side effects the nurses told me to watch for, the treatment plans my oncologist prescribed, the amount of time it took my hair to fall out or my white blood cell count to bounce back up.

The poetry would come later, diving into the images I couldn’t digest at the time of treatment. In my prose and poetry over the years, I’d always written with passion, but I realized after cancer that I’d only toyed along the edges of emotion in my writing. After treatment, I dove into emotion’s gruesome depths and examined the rubble I dredged up.

The human race fears pain, and we certainly fear cancer. We think if we ignore it that we can somehow keep it at bay, but the bitter truth I recently discovered is that the majority of young people diagnosed with cancer do not have a known mutation or family history of cancer, and they have been living perfectly healthy lives until the diagnosis leaps on them from nowhere.

Everyone wants a reason for why a perfectly healthy 32-year-old pregnant woman is diagnosed with breast cancer seemingly at random, but it is just that: random.

After cancer more than ever before, I concluded that life is unfair and that we will all face unique, often unequal, struggles, whether they come in the form of a health crisis or some other disaster. It is rare that we face a crisis together as a society, such as during the COVID-19 pandemic. Even this shared crisis impacted individual people in vastly different ways. We witnessed society struggling to both pull apart as it was drawn together, like gum on the sole of your sneaker.

The whole world was about to witness its greatest modern trial; in 2020, more than ever before, we needed to come together to grow through our individual and shared tragedies. We needed to share hope.

The biggest cause of my emotional distress at the time of my initial diagnosis was that I didn’t know how severe the cancer was or how far it had spread. I highly recommend not Googling “cancer” after an initial diagnosis. That’s a hell of a tailspin.

Some people fight cancer for the rest of their lives after diagnosis, while others go into remission, sometimes after relatively simple treatment. Every case is so incredibly different.

I had to bite back my worry and my crazy and wait until I met with the oncologist to get any real answers. That meant sitting on my hands for eight long and painful days after I received the infamous call.

To be certain, I didn’t know how to react when I first received the call. It was a Monday afternoon, but it fell between Christmas and New Year, so my husband and I were both at home, enjoying a little free time. The kids played with my husband in the living room as I rushed to answer the phone. The man on the phone had introduced himself as a doctor covering for the surgeon who’d ordered my biopsy the week prior. He didn’t dawdle or prolong the inevitable; he launched into the heart of the matter within seconds: “Your biopsy results indicate breast cancer.”

I was in shock. I blinked. From the corner of my eye, I could see our Christmas tree, the lights still twinkling in the middle of the day. I glanced down at my rounded belly. It was the holidays, and I was pregnant. This had to be the worst episode of Punked ever filmed. To my mind, a complete stranger had just told me that I was dying. This could only be followed by a punchline. It was not reality.

However, the other side of the line remained silent, and the doctor’s words echoed in my head. He was not going to allow me the relief of a joke. This was 100% serious. I actually had cancer.

“Whooooa.” It was more the rush of air from my lungs than any audible word.

“How are you doing?”

In my little Midwest Nice voice, I managed, “Good” because that’s the way a polite Wisconsin woman answers that question from a stranger. My teacher/writer brain had flown the coop; I was incapable of anything logical, creative, or intelligent in that moment.

I heard a hint of a smile in his voice; I assumed mine wasn’t the typical response. “I’m sure you’re not, but that’s okay. You may feel a lot of different things in the days to come, and all of that is normal. Do you want to ask any questions at this time, or would you rather I tell you a little more about what we’ve found?”

I let him tell me a bit more because my voice box had apparently relocated to somewhere in the roof of my mouth, as mounting tears threatened to pour. He cautioned that he didn’t want to overwhelm me and that there would be a nurse calling to set up an appointment with an oncologist soon. The oncologist would be able to answer my questions and get me started on a treatment path. When I hung up, all I could do was sink my very pregnant body to the floor and call, “Eli, help!”

As always, my husband came running over.

It was a terrifying paradox to imagine both life and death being created inside me at the same time. I couldn’t help but imagine the cancer as black sludge slinking through my tissue. Pictures that I’d seen of oil spills in the ocean crossed my mind. Naively, I panicked: could the cancer harm the baby? Here I was minding my own business, judging myself to be a fairly healthy person when a dangerous force that I couldn’t control slipped in. In my everyday life, I ate vegetables fresh from our garden, stayed active (is there an alternative when you have little kids?), and smoked a grand total of 1 and a half cigarettes in my entire life. My medical record up until “cancer diagnosis” was painstakingly boring, for which I was grateful; the only surgery I’d had prior to 2020 was a wisdom tooth removal. (“Does that even count?” I’d asked a nurse early in my treatment. She’d shrugged.) As far as I could tell, I hadn’t done a single darn thing that would cause a massive tumor to grow in my breast.

Was everything I’d been told a lie?

Although friends and doctors alike would caution me against this line of thought in the days to come, I still couldn’t help but wonder, “What did I do wrong?” I forced myself to a more positive line of thinking, taking each day one step at a time. This has been helpful, but cancer is an emotional rollercoaster, even long into remission.

***

When I first met with my oncologist, he insisted on induction and forbid me from breastfeeding-- two things that alone were tough to deal with and that combined felt disheartening, but I knew it was for my own safety and for the baby's. Dr. B also answered all of my questions, explained treatment options clearly, and confidently told me that I’d get through this.

“You’re stubborn,” he said. “My stubborn patients do well.”

After Corey was born, there was a whirlwind week of testing to determine how far the cancer had spread. This was the most difficult time because I’d been warned of how aggressive the tumor was, and any time I dared to research online, I was greeted with heartbreaking statistics: young women are often diagnosed with the most advanced and most aggressive breast cancers. Because we are not allowed regular mammograms, or any sort of monitoring besides checking our own breasts at home, so many of these breast cancers in women under forty are missed until the cancer has grown and spread significantly. Too often, young people with undiagnosed cancer are ushered from one department of the hospital to another, doctors shaking their heads at our bizarre symptoms, never considering cancer, until we’re finally directed to oncology as a last resort, where they surely sigh and shake their heads at everyone else in the hospital.

By the time many of us young adults with cancer receive our scan results, we are told we have just months or years to live, and we will leave behind new spouses, young children, helpless infants, shocked parents, stunned friends and coworkers.

I didn’t want to become another statistic. I wasn’t ready to leave everyone behind.

Did we catch my cancer soon enough?

Any slight headache or bone pain had me panicking. I took deep breaths and focused on my two kiddos and new baby. Family and friends were praying and sending me positive thoughts daily, all of which helped to keep me centered. Finally, we got probably the best news we could get in this situation: though the tumor was large, the cancer was localized to the left breast and axillary lymph nodes. I was probably stage 3, if we were using the cancer staging lingo.

At that first oncology appointment, my dad, who I’d asked to come along for support and because of his own experience (he was an emergency room physician for thirty years and he’d recently battled prostate cancer) had asked about the prognosis. Dr. B couldn’t offer a clear one at the time because we didn’t yet know if the cancer had spread to other parts of my body. “If it’s localized, it’s essentially curable,” he’d begun, and I’d let out the breath I’d been holding. Curable. Okay. I just had to deal with some crap for now, but I would move on. Hearing the word “curable” felt like the doctor had seen me struggling in the ocean, the waves overwhelming me, and he’d graciously tossed me a life vest. Maybe cancer didn’t have to be the death sentence we imagine it to be.

Dr. B had continued, “If it’s spread to someplace like the brain or lungs, the prognosis may be something like three to five years.” The life vest suddenly deflated as my blood rushed to my head. I can’t die, I can’t die, repeated in a mantra in my head. I thought, my heart racing, I have so much more to do! I’m only 32!

“How can we know if it’s spread?” I managed.

“That’s why we will do the scans.” I would soon find that Dr. B always answered questions in a very straightforward manner. This = that. No drama. I found his style a comforting balance to my own confusion and emotions. He had the answers and the facts, even when they were unpleasant. He went on to explain the MRI and PET/CT scans that I would be undergoing to see where cancer could be identified in my body. He also explained the treatments I could possibly be going through in a few short weeks: chemotherapy, radiation, surgery…my head spun.

“However, we can’t start any of that until the baby is born,” he noted, pointing to my very pregnant belly. He turned and typed something on the computer.

I had been sitting on my hands to keep them from shaking. I slipped the numb digits out from under my thighs and entwined them under my belly. “You’re saying that I should have the baby soon…and I’m 37 weeks along now. Should I be induced?”

“Yes,” he said, “Absolutely. The baby should be delivered as soon as possible.”

And that’s why I ended up in the delivery room just one day later.

***

The most difficult thing about going through cancer treatment during a global pandemic is that when I most needed the support and comfort of others around me, it was almost impossible to have that physical support and connection.

An entire year passed post-chemo before I could say that sentence out loud without crying. There is a lot of trauma to unpack there, and I think we’ve been dealt a lot of trauma as a world through the COVID-19 pandemic. I don’t think that cancer treatment or the effects of a pandemic should be downplayed in any way, and to have them doubly compiled brought about a sort of unexpected and hard-hitting PTSD that I really hadn’t expected in the midst of my cancer battle.

When you’re in the thick of life’s worst moments, you “just keep swimming”. It’s all you can do-- tread the water, try to stay afloat, hope for your life raft to reach you in time.

Later, you’re on the shore, and you can reflect on the many times your chin drifted beneath the tossing waves, your mouth taking in water, before your legs kicked you back up for another few moments…just another few moments. It becomes both necessary and impossible to reflect on trauma. We must reflect so that we can grow and move beyond the stress of our experience.

However, in my non-expert opinion, examining trauma is akin to picking at a scab with a fiery needle repeatedly. We’re not meant to endure this psychological torture, yet we’ll only become better at the end of the experience. When we look beyond the pain, we can see the hope.

A very dear friend of both my husband and me, and the best man from our wedding, Levi, was someone I turned to during my cancer battle, both to rant about the unfairness of the world and to talk about hope. When I told him that I was writing about my experience and about how others find strength and hope in difficult times, he told me that faith has always been important to him, calling faith “the color to [his] world”. His reliance on faith is clear through his career choice: he is a Lutheran pastor.

Levi is a loving and lighthearted person, an avid reader who always shares with me his latest recommendations, and someone who makes friends easily, especially in the online realm (his Discord and Tumblr friends span the globe).

Another thing that always strikes me about Levi is that he is very open-minded, and I believe that helps to make him a hopeful person. He is gay, which I think also connects to his resilience. He always views controversial issues from multiple angles, rather than picking one side to yell about in a loud voice, like so many people tend to do, as we have witnessed tenfold during this pandemic. Despite the fact that he is only my age, I think he is one of the wisest people I know: “an old soul”, as I jokingly refer to him.

He told me that one of the greatest challenges of being a pastor during the pandemic is that “you have to make tough decisions that you wouldn’t have to [make] otherwise. Whether to do in-person service, and, if so, what sorts of precautions” to take. He lives in rural Wyoming where, like in much of the U.S., he’s witnessing growing fractures among political lines. He shared the struggle of “dealing with people in the same parish who are very far right and very far left and doing this in a way that respects them, standing up for what is right despite peoples’ ideologies.”

Levi described a recent sermon that he gave about the fifth commandment, comparing the responsibility that we have to feed and clothe others to our responsibility to keep others healthy during the pandemic. Not everyone in his congregation particularly liked hearing that lesson, and he understood why, with how quickly issues like mask-wearing and vaccinations have been politicized in our country. Levi voiced some frustration with how people hone on their own perspectives, cutting out others when we most need to come together.

Despite the struggles, Levi has not let the pandemic bring him down. I hear resilience in his joy to bring the word to others, to start new adult education programs and to restart his church’s confirmation class again. Even when he reached a point where all of the stress of the year felt compiled on top of him, he was able to pray and continue to be faithful; he wouldn’t let the weight of the world bring him down.

He told me, “This is the most important work I can be doing. During hard times, people especially need the word and need the sacraments. God wants people to know his love.”

As a people, we find hope in so many ways. As a fellow Christian, I share Levi’s belief that we can find comfort and love through our faith in God. However, I also realize that many people have different spiritual beliefs or may find hope through other directions besides faith.

One of the other ways I personally find hope is through nature. The beauty of changing seasons (those first frolicking snowflakes in late autumn, the slow unwrapping of a new flower in spring) is something powerful that I believe connects all of us.

During chemotherapy, there were some days when I felt quite weak; I couldn’t take a long walk or chase my kids outside, but I could still be in nature. Neither cancer treatment nor COVID-19 could change the fact that our trees grew buds and the earth burst into a fresh coat of green in the spring of 2020. As I watched the seasons change, I knew that I was making it through cancer treatment, and that I was making progress in some tangible way. I could better connect to my faith, and I could feel the innate knowledge that we can always have hope, even in our darkest moments.