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Accessing care for my anal cancer was awful. I couldn't endure the hourlong car ride, so I spent $2,200 to stay in a hotel nearby.

Nov 1, 2023, 17:41 IST
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Terry Kelly (right) and her husband.Courtesy of Terry Kelly
  • Terry Kelly was 62 when she was diagnosed with anal cancer in 2019.
  • She had to travel an hour for treatment.
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This as-told-to essay is based on a conversation with Terry Kelly. It has been edited for length and clarity.

At the start of 2019, I had an uncomfortable, throbbing sensation near my rear. I'd had hemorrhoids and an anal fissure in the past, and I thought that's what I was facing again. When I saw my doctor, she found something much more serious: a cancerous tumor in my anus.

Hearing the word cancer is terrifying. You never think it will happen to you. But there was good news: about 83% of people with localized anal cancer are still alive five years after diagnosis. There's a treatment protocol that works, but it's very intensive: six weeks of radiation to the anus, with additional chemotherapy during the first and fifth weeks.

I contacted the Cancer Hope Network and found a mentor who had fought anal cancer 14 years earlier. She told me, "This is wicked but doable." She wasn't kidding.

The hourlong drive to treatment was unbearable

I live in a really beautiful area of Washington state, where my boat is docked on part of Puget Sound right behind my house. One downside to living here is that it's rural. We have to drive 10 miles just to get to a grocery store. There is a small health clinic about 15 minutes away, but they're not at all equipped to handle cancer, so I needed to access treatment in a town an hour's drive away.

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An hour might not sound like much, but it was a white-knuckle trip all the way. Imagine the worst hangover of your life, times 20. That's how chemo and radiation made me feel. I would retreat into myself for the whole ride, just trying to get through. But I knew after treatment I'd need to ride home, then do it all again the next day and the next week.

Three weeks into treatment, my husband could see the toll the drive was having on me. He contacted a hotel right across from the radiation clinic, and they gave us a huge discount. Even still, we spent about $2,200 renting it for the final three weeks of treatment.

I named the radiation machine to cope mentally

During radiation treatments, I would have my pants down and my bottom exposed. There was a huge machine behind me, and I didn't want to think about what it was doing to me.

Instead, I decided to befriend it. I named the machine Eddie the Eradicator. Every day, I would slip a trinket into my pocket: a picture of someone I loved or a piece of jewelry that was meaningful. I'd say, "Hey, Eddie, be kind to me," and maybe even tell the machine about what I was holding with me. That allowed my mind to focus on the good in my life.

Ending treatment is a time of celebration, but the three weeks after radiation were the hardest part. My entire groin and bottom was raw and blistered. I had to lay in a recliner with my legs up and apart. I couldn't even wear underwear, and going to the bathroom was incredibly painful.

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I'm cancer-free now and helping others

A month after treatment ended, I was finally able to walk again and get out for a little boat ride. Two months later, my husband and I did a short three-day road trip. After a year, my doctor declared me cancer-free, which was music to my ears.

In the four years since then, I've become dedicated to sharing my story. Like 90% of anal cancers, mine was tied to human papillomavirus (HPV), the most common STI in America. I could be a poster child for the HPV vaccine. I've done advocacy with the HPV Cancers Alliance to help people understand why the vaccine is important.

I also try to speak with patients. Advice from people who had been through treatments helped me so much. So did check-ins from friends and family. Cancer is such a big thing, but the little kindnesses are what help you get through it day by day.

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