by Rachel Davis

On October 4th, 2016, I went out to the garden. During the spring and summer, the garden in the back of our Ohio home was my happy place; surrounded on two sides by corn fields, the abundant foliage created a forest clearing for me to explore, and the soft, warm dirt underfoot provided a plush carpet for me to walk in. I could lose myself for hours pacing around, my shoes forgotten, my family by my side, happy to be present in such a beautiful scene. That night, though, it was too cold to walk barefoot through the muck, and there were no more plants to shield me from the problems of everyday life. I had never felt so alone as I did in that moment. On October 4th, 2016, I went out to the garden and I screamed.

When I got back inside, I flopped down on my parents’ bed, squeezing myself between the two of them.

“Nobody even noticed,” I joked, causing small, bittersweet smiles to appear on their faces, despite everything.

That day, we had gotten the results of Mom’s biopsy back. We all knew what result was coming, but we had held onto stupid hope anyway, and now it was all gone: the lump in Mom’s brain had been confirmed as Glioblastoma Multiforme, and we were told was unlikely she would survive another year. She was forty-nine at the time.

Somehow, we put on brave faces for each other. Dad was reaching out to friends and extended family members. While Mom stroked my hair, I was busy thinking about hers; she had worn it long for years, and how she was going to lose it all. I couldn’t imagine her without all that hair framing her still-youthful face. Would she still be youthful looking through the whole process? I didn’t know, and I sure as hell couldn’t ask. I didn’t know what I could ask, if there even was anything. Really, none of us knew what to say to each other, but I do know we managed not to cry.

Glioblastoma is an aggressive form of brain cancer which, according to tocagen.com, has a 37.6% survival rate for the first year of diagnosis. This drops to 5.1% for the second year, and 2.6% for the fifth. Experiences vary widely with what part of the brain is affected, but symptoms generally include motor difficulties, such as lack of coordination and balance and difficulty standing, dizziness, fatigue, and even vision problems can develop, depending on a person’s individual case.

For everyone I’ve known who’s dealt with this condition– a significantly higher number now than it was two years ago– the diagnosis was usually prompted by a fall. In Mom’s case, our first clue that something was wrong was on June 3rd of that year. At 6:40 that morning, Mom was already up and around, having gone to the store to fetch ingredients for a casserole she had volunteered to make for a funeral taking place at our church that afternoon. When she got home, though, she felt what she described as “a sudden wave of weakness” and had to sit down. Things took a turn for the worse when she realized she couldn’t get up; the entire right side of her body was numb.

I was in charge of driving her to the hospital, being the only other person in the house at the time. At first, she refused to go in. “I’m okay now. This was nothing,” she tried to argue.

I wasn’t falling for it. I knew Mom’s habit of ignoring her own problems for the sake of others, and, having just read a report saying women are more likely to die of heart attacks because they ignore the symptoms, I wasn’t going to let her die for the sake of a church function.

After all of Mom’s hometown visitors came and went, we were informed that it looked like she had a small stroke, and that our hospital– not-so-lovingly referred to as the local vicodin dispensary– was woefully unprepared to treat such a case. She has to be life-flighted to a more advanced hospital about a 15 minute helicopter ride away, where we received the official diagnosis of a TIA, commonly considered a “mini-stroke”. Through the entire process, Mom was protesting, saying she was fine, that they needed to let her go, that she couldn’t spend the whole day lying down when there were weekend errands to be run and casseroles to be made.

In the months that followed, it was obvious Mom was struggling, even if she were too stubborn to admit it. She was still having her “waves of weakness,” but her doctor and boss basically had to force her to cut back from around 55 hours a week to a paltry 40, and our pastor wouldn’t let her continue her voluntary church positions as board member, children’s leader, worship team member, and first line of emotional support for the entire congregation. Even with her energy diminished so much by her traitorous brain, she was restless, so the summer became dedicated to projects and experiences. It was during that time that she crocheted my brother a king sized blanket, and started visiting her father at least three times a week. She and I spent the entire summer working in the garden and fielding my college offers. Even with Mom in a somewhat fragile state, things were blissful in the long summer days.

Leaves began to turn and fall. Also falling? Mom, whose balance and coordination had taken a notable turn for the worse. My sister Rebecca and I urged her to move up her follow up appointment, as our siblings Elizabeth and Thad also would have done, had they lived in Van Wert, but Mom, stubbornly optimistic, refused to take the time off of work for what she thought would resolve itself. This all changed when one day when Mom, early to church as always, fell down the stairs that led to the stage. Rebecca rushed her to the emergency room, where a cat scan revealed a three centimeter tumor, and, well, you know the rest.

The days following the diagnosis are, honestly, a blur. I know I skipped out on half my classes the next day. I know Mom and Dad brought me a gift bag from my favorite shop on their way home from the hospital a couple days later. And I know, from Rebecca’s instagram feed, that miraculously, all eight members of our family (two parents, four kids, and two spouses) were able to congregate around our almost-too-small table, grounding ourselves around a meal of soup and sandwiches, accompanied by the last of the garden’s produce. Even Dad, famous for his stern expressions in all documented media, has a genuine smile that can be likened to that of a happy pitbull.

There are a lot of unexpected side effects of someone you love getting cancer in October. For instance, you don’t need to find a costume or go to any haunted houses that year, because your real life is scary enough that you don’t need any artificial fright. Also, more notably, you start to despise breast cancer awareness campaigns. This makes you feel like some sort of uncharitable monster, as those campaigns are partially responsible for breast cancer having an 80% survival rate, but you can’t help but notice the hypocrisy of everyone saying they support cancer patients, but only if their disease is popular enough that it can have catchy slogans like #SaveTheTitties and have everything decked out in enough pink to make a Pepto-Bismol factory jealous.

It was during one of these pink-outs that I received the news that Mom was out of the miracle surgery that had been offered to us by Dr. James Elder, a world renowned neurosurgeon at The James Center at Ohio State University. Initially, we had been told that, because of its position in the frontal lobe, any attempt at removal was likely to cause full paralysis; our local doctors deemed any sort of surgical intervention to be too risky and therefore off the table. Within two weeks of the diagnosis, however, we were told that OSU was interested in our case, and, thanks to Dr. Elder’s steady hands,  95-99% of the tumor was successfully removed a week after they contacted us.

The weather grew colder, and our prospects grew brighter. Mom started a pill based chemotherapy, which made her nauseous and tired but not as dreadfully as chemotherapy patients often describe their experiences on treatment. Once a week, she and my father would go to Fort Wayne, Indiana, approximately an hour away from us, for her radiation therapy, and whenever I wasn’t in school I would tag along. We started exploring a whole new section of a city we had been visiting my entire life, including a specialty olive oil and balsamic shop, as well as a new breakfast spot where Mom discovered a new favorite omelette made with apples and cheddar. In the past, Fort Wayne had meant shopping at whatever fast-fashion place had caught the fancy of my sisters and myself that day, or going to a restaurant that, for once, wasn’t fast food. Now, these trips and this city became part of the background of our lives. We struck up friendships with other regular patients and their families, and we would bring baked goods to the nursing staff at the clinic. The city took on a new significance; it had become not just an escape from the mundane, but instead a part of it, our new home away from home.

Dad worried that Mom’s personality would change. He had always hypervigilant to any sort of anomaly in a person’s behavior, and now he had a reason to put this skill to use. Vigilance, as it so often does, easily turned to paranoia, and this wasn’t made any easier by Mom’s newfound favorite excuse for anything less than perfect conduct.

“Don’t laugh. I have a brain tumor!” she would say, defending such behaviors of mixing up the names of two actors, or realizing she had forgotten to pass vital information about upcoming events to family members. (Is it any wonder we could never manage to make concrete plans?)

“Well dear, if that’s true, you’ve had a brain tumor for twenty-five years,” Dad would respond, and they would smile at each other and laugh at all the absurdity that our lives had become.

That first Christmas was one of the biggest we had in a long time, as we were all sort of afraid it would be the last one, but the best gift we received wouldn’t come until February: Mom had been selected to go on the Optune system.

The Optune system is a fairly new treatment for glioblastoma patients. It consists of a machine about the size of a Barnes and Noble special edition classic, if a bit heavier, which the patient is connected to through a series of wires which are applied to the head with sticky pads that look similar to those used in a defibulator. These pads would send electrical impulses to the cancerous cells which would impede their growth. The system, when used in conjunction with chemotherapy, was shown to improve five year survival to 13% in a clinical trial which finished in 2016. Although the system is expensive, clocking in at a whopping $21,000 per month, our insurance would cover all of it. The only problem? Mom would have to shave her head.

Mom was lucky to have retained her hair through the entire process. She had gone to a short bob shortly before her surgery, donating the rest to Children with Hair Loss, but the most damage the chemo and radiation had caused was a bit of thinning near the top. Her hair became a sign of hope, a real success in the face of the trials she was experiencing, and the new treatment had to take that away. We shaved her head at home, using my dad’s clippers, for a result that was described by older people as looking very much like Sinhead O’Connor. Although she was upset, Mom declared that she was happier bald and alive than dead with hair. Still, it was odd to see her looking so exposed. Although she never said it in so many words, I knew she felt the same way, refusing to go outside without a hat, and trying to brush strands out of her eyes that no longer existed.

Going on Optune meant that chemo and radiation were able to cease, giving Mom a new amount of energy and allowing her to throw herself even more into activities. We went out more, doubling down on our earlier exploration efforts, spending as much time with each other as we possibly could, for fear of what could happen in the future if we hadn’t.

Once a month, Mom had to go back to OSU for follow up appointments. We were familiar with the campus, as it Rebecca’s alma mater, and as such, we were always able to make it a real event when we went there. We would stop by North Market, a sort of mall alternative full of independent producers, which always ended with Jeni’s, a Columbus centered brand of ice cream shops made from fair trade ingredients, with a variety of unique flavors. We knew the staff at The James Center well. In the summer, we would take grocery bags full of our home grown tomatoes for the employees there to share, and we learned to always ask Dr. Giglio, Mom’s neuro-oncologist, about his funky socks, even finding him a few pairs as a sort of tip for keeping Mom alive.

On May 21st, 2017, I put on my favorite dress, then a cap and gown. A few months before, we weren’t even sure if Mom would be alive to see me graduate high school. As I walked across the makeshift stage in our school gym, I knew that the ceremony wasn’t for me. It was for my mother, who had done everything possible to support me through all the challenges that come with senior year, while we also learned how to navigate her illness. Later that night, at the celebratory dinner we had with my entire extended family, Mom left a 30% tip. Even with all that had happened to her, she was unaffected by anger or bitterness, and was dedicated to pouring love and goodness into the world.

The particular spot in the garden where I went after receiving what is, so far, the worst news of my life had become a sort of perversely sacred place to me; while the garden remained my greatest felicity, that spot was filled with so much foreboding energy that I couldn’t bring myself to go there no matter the circumstances. It became a black hole in the center of a warm galaxy, threatening to swallow up all the good that surrounded it.

This year, Dad expanded the garden. Instead of a disquieting patch of grass, an hour with a rototiller had turned the spot into dirt– dark, loam-rich dirt, full of agricultural potential. As the summer went on, all of my fears had turned to fertilizer as, from the ground that was once a reminder of pain, new life flourished.