The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.

The Loneliness of Caregiving

by Suesan CotaCaregiverAugust 24, 2023View more posts from Suesan Cota

This article is being featured again to celebrate impactful stories from the adolescent and young adult cancer community to help celebrate AYA week 2024! Check out additional content related to this article on our Instagram.

On the day before my partner Dil was diagnosed, we went water tubing. The day off was a stolen pleasure on a beautiful Monday morning in June and we had been together for about two and a half years. About midway through our float, I capsized, fell into the river, my bathing suit top fell off, and my knees were scraped against the bottom of the river. My tumble was embarrassing and silly and we joked about the mishap for the rest of the day. For lunch, we got a smorgasbord of Mexican food and took a solid nap. He had been feeling tired lately but he had just come out of the busy season at work. We attributed his fatigue to too much stress and lingering respiratory issues.

The next afternoon, while I was leaving my therapist’s building, Dil called me and asked if I was sitting down. I felt frozen, as he told me that he had been diagnosed with leukemia. Almost immediately everything started moving quickly. We met with the head of the cancer center the next morning and learned about acute myeloid leukemia (AML). Dil was admitted that Friday morning and, initially, we thought he would spend a four-week stint in the hospital. As the months passed, we seemed to face every worst-case scenario. The cancer was completely unresponsive to the first two rounds of induction chemo, there were complications from treatment, and Dil would need a stem cell transplant.

Time took on new meaning during his first three-month stay in the hospital. When I was with him, time evaporated and entire days were spent cuddling, ordering food and, if he was napping, I listened to podcasts and cross-stitched. We celebrated the 4th of July, Labor Day, and Thanksgiving in the hospital. When I had to be at work or during non-visiting hours, I missed him, worried, and was lonesome. Six months later, he was ready for transplant and we already felt like we had been through battle. We had no idea what was facing us.

As a caregiver, I’ve been all in. Before Dil got sick, I was deeply in love with him. I knew three weeks into dating him, he was my person. After seven years of dating around and mostly being single, I felt it in my bones that he was different. Once he became sick, I would do anything to get him better. I took family leave from work and read everything I could get my hands on. I joined half a dozen different young adult groups for those diagnosed with cancer and their caregivers. Almost all the other patients in the leukemia wing were at least twice his age. We didn’t have a peer group and the nurses referred to us as “the kids” even though I’m hurtling towards forty years old.

In January of this year, Dil received a haplo transplant with stem cells from his brother with whom he is a 50% match. He became incredibly ill for weeks. The most unbearable days are the ones where he’s too sick to talk to me at all. I miss him so much and the loneliness feels as if it is pressing on my chest. I live in constant fear that I could bring germs to him in the hospital. I mask all the time, and I haven’t seen my friends in months because they have young children who could be carrying colds and coughs. Almost all of the socializing I do is over the phone or the computer. I’m homesick for the people he and I were before the diagnosis. We had always been cautious in the pandemic but for the months in between active chemo and transplant, we were recluses. We’re still in the midst of the first 100 days post-transplant. The doctors have told us that we have to be patient and it takes time, but life feels like it’s moving on without us. I scroll through social media’s endless servings of vacation photos, party pics, and baby arrivals, and they have started to feel like a different planet, a language that has grown rusty for me. Our life has been whittled down in the past eight months to illness, treatment, and longing heartache for our regular boring lives. I have faith every day that he will recover. On the tough days, we talk about all the fun things that we’ll do together once he’s better. We spin out elaborate scenarios of normal life and how we’ll live it. These conversations keep me going when my heart is breaking from seeing him so sick, and when I go to sleep in our empty bed each night without him.

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