In early summer 2020 I noticed a small rough patch in my anal canal while showering. I couldn’t get in to see the nurse practitioner for an HRA (partly because of the COVID restrictions) but asked my primary care doc and he took a look and he immediately referred me to a surgeon to get a biopsy. I had been followed for many years due to anal condyloma so he knew I was at risk. By then it was August 2020 and it was stage 3C anal cancer. I was fairly quickly seen by a medical oncologist who looked over all the data and put me on the NIGER protocol. The biopsy was difficult and the pain from that never went away as I started the chemo and radiation.
Over the course of treatment I was hospitalized a few times for infection (again, probably the biopsy), fainting, and fluid buildup in my lungs. I didn’t get much support from the hospital but did get connected to a social worker at some point but they didn’t do much. Ironically, their motto was “with you every step of the way”. I can laugh about that now but even at this small hospital I was just another patient moving through the treatment. There was no one with me from the hospital. I remember the names of my medical oncologist, radiation oncologist and surgeon but not a single nurse or social worker. And I would not recommend any of the doctors. I was fortunate to have a good primary care physician and luckier still that the year before I had decided to pay an annual fee to get additional access through a “light” concierge medical practice. I saw him regularly and he kept me on pain medication and laxatives and anti-emetics as needed as well as following up on the other side effects. I could call him on Sunday morning when I fell and bumped my head to know if that was important enough to warrant a trip to the ED.
Early on I found the ACF website and listened to a webinar and it was quite terrifying. Stories of pain and anal dilators and sexual dysfunction. It was too much to even consider and I assumed it was patients with the worst outcomes and that was the end of my online research. I don’t remember much about the course of treatment. My partner was with me the entire time and my brother came to help out during the worst 2 weeks. And I hired a caregiver at some point. I do remember that every day (or as many times a day as nature called) I turned on the water to the bathtub while sitting on the toilet because the only relief from the pain was getting into the hot water as quickly as possible to soak. I would spend hours in the tub as the water cooled not having the energy to get out.
I finished treatment just before Halloween 2020. I had lost over 10 pounds at that point and I was very weak. I continued to endure the pain for months and by January 2021 I had lost more weight, a total of 25 pounds. I just remember going to bed at night hoping I wouldn’t wake up the next day. In February I was beginning to recover and started to regain the lost weight. Slowly over the course of 2021, I got better and was back to my starting weight in January 2022. But there were good things in 2021, too. I proposed to my partner in April and we were married in November. Amazing luck that I found such a good man who put up with the treatment and my suffering and then agreed to marry me despite the continuing health problems. The physical effects of the treatment never go away. Incontinence isn’t a huge problem for me now but we’ve learned that when I need to go, I need to go right then! And the sexual dysfunction and rather constant anal pain that so scared me in the ACF webinar in August 2020 is with me every day. Every 6-month visit to the anal surgeon is a challenge – my anus is so constricted that a digital exam is a painful exercise but getting better. I changed to an anal surgeon over an hour from my home due to the experience with the guy who destroyed me doing the biopsy in 2020.
I’m on the verge of my 4 year PET scan and MRI. I’m confident of good news and that I’ll carry on living this new life with its challenges.
