Treatment

In Michigan, fall days can vary widely. You might have a week of gorgeous 70 degree sunshine followed by a weekend snow flurry that then melts and leaves you in the crisp middle realm of about 50 degrees. This mercurial weather certainly mirrored the way our days were going during my sister’s first experience with chemotherapy - some good, some bad, most just middling with an impending sense of cold.

It took me most of September that year to figure out that nursing school or no nursing school, I needed to be home. My college was about an hour away from my parents, and I had an apartment there with friends, but the more I stayed at school the more disconnected I felt from my sister. Her first round of chemotherapy was administered inpatient to see how she'd react, and I visited her there. She was quiet, withdrawn, moody. I told myself this was understandable. We were all trying to cope with this new grief, all the little losses - of college, of maid of honor duties, of independence - piling up into something heavy and hard to carry, like weightless leaves raked into an enormous and heavy pile.

But she was discharged home and nothing changed. Her texts were brief, phone calls briefer. As the days slipped into weeks, I began to feel more and more isolated from the rest of my family, who seemed to be braving this wilderness together while I floated off alone, absorbed in my own life. They were going to the hospital often for treatments, and I'd meet them there whenever I could, but it was always the same - my sister quiet and monotoned, my mom filling her silences with too many details about the treatment plan. They didn't mean to shut me out, but it's difficult to stay in the loop with the daily grind of cancer's effects when you're not there in person.

The day that they shaved her head was the day I knew I had to do something differently. Her hair had started falling out in clumps, her pillow and shower drain filling up with her coarse, thick blond locks like the leaves that were scraping down the street and piling in the drains. It started at her temples. One day she came to visit her boyfriend and stopped by my apartment to borrow a headband to cover her bald spots. She hadn't realized how obvious they were until she was driving there. We found the perfect wide, soft headband that matched her outfit and I sent her on her way, more sad about this small detail than I would have dreamed possible.

Losing her hair was really itchy for her, so one late September night they decided to shave it so she could start wearing the beautiful blond wig donated from the aptly named "Children with Hair Loss.” My sister was not a fan of the on-the-nose name of the organization, but she was thankful that being under age 21 allowed her a free wig since they can cost well over $1,000. They texted me before and after pictures, and the images on my phone screen knocked the breath out of me. My sister’s hair was always a defining characteristic of hers - big, textured, dirty blond, and usually piled on top of her head in a messy bun as big as her face. From a young age she had been talented with hair, creating updos and French braids years before I learned how, to my immense aggravation. For most of elementary school she was determined to be a cosmetologist when she grew up.

Seeing her hair shaved away and piled in the sink brought tears to my eyes and a sense of finality to any wisps of denial to which I had still clung. I hadn't been there to provide companionship, strength, or commiseration during the shaving. Had my mom cried while she did it? Had my sister? Was my dad there, or was it too hard for him to watch? These particulars suddenly seemed earth-shatteringly important.

Then and there I decided to spend more time at home. For the rest of the semester, I spent five nights a week at home with my family, sleeping at my college apartment only on the nights before a 7 AM clinical rotation at the hospital. At first I thought I was being sacrificial; heroic, even, by showing up for my sister in a way that made my life harder but was the best thing for her. But as the jewel-toned leaves of October drifted into the gray, bare branches of November, I realized this was just as much for me as it was for her.

I had imagined we'd spend some quality time together, playing board games or watching old home videos of ourselves and laughing. This happened sometimes, but the majority of our days were spent in semi-silence, her on the chaise lounge, me on the couch doing homework. In nursing school they had talked about "the ministry of presence," and never before had I truly experienced what that meant. In my mind, my sister and I needed to have Instagram-worthy moments of connection and mirth to brighten her otherwise drab, cancer-centric days. I flipped through potential moments of joy in my mind, trying too hard to create them at first.

But the closer we got to winter and the end of her chemotherapy, the more I realized just being there was the point. We could sit silently in the living room, minutes ticking by, and that was enough. Nothing I could say or do was going to give back what she had lost, what she was losing. Just being nearby was all I had to offer, and once in a while, on a good day - when every star and blood count number aligned - it was enough.

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This essay reflects on my sister’s first experience of cancer, when I was still in college. When she relapsed, I was married and living in an apartment with my husband about an hour away from her and my parents. I wasn’t able to move back in like I had the first time, and it became harder to find those stretches of time for “the ministry of presence” to help both of us. I’m curious about those of you who live far away from your siblings - how did or do you stay in touch during the cancer journey, both in regards to logistics but also relationally? I’ll look forward to your comments below.