In 2020, we had COVID-19, and I had what I thought was a hemorrhoid. I had two doctors, my PCP and my OBGYN, tell me to use Preparation H and it should go away. As the year went on and my “hemorrhoid” got worse, specifically, bigger and more painful, the pandemic was creating havoc on our health care system and appointments were all but impossible to schedule.
In August of 2020, I noticed that my right groin lymph nodes, at least one, were swollen and I could feel it by just rubbing my finger over the skin. I demanded an appointment to see my PCP, by this time, I was quite concerned. My PCP ordered an ultrasound and it was finally scheduled for January 4, 2021.
I had the ultrasound and the radiologist noted that the findings needed to be further investigated. Because I am a firm believer in advocating for your own health, I made an appointment with a rectal & colon surgeon who was able to get me in on January 6, 2021. At my appointment, we chatted about family history for quite a while, and then he tried to take a look, however, the pain was so bad, he decided that we needed to go to the OR.
On January 12, 2021, I had seven biopsies taken under anesthesia and all seven came back positive for squamous cell carcinoma of the anal canal. I was given the results on January 20, 2021. I was 54 years old and up to that point, I had never had a serious illness.
From that day forward, it was a frenzy of appointments: radiation oncology, medical oncology, CT scan, PET scan, and because it was during the pandemic, I was not permitted to have a support person with me at any of the appointments, with the exception of my first medical oncology appointment and chemo education. I was devastated … I felt so alone.
I had done extensive research before seeing the oncology doctors and I knew that the NIGRO Protocol was the treatment used for this cancer. Beginning March 15, 2021 and ending April 30, 2021, I underwent two rounds of chemotherapy and 30 radiation treatments. I continued to work part-time during treatment, but it was awful. I quickly learned that radiation burns are no joke, especially when they are located in the anal, vaginal, and pelvic areas. I was on Oxycodone, extended-release Morphine, and then a Fentanyl patch … which I have to add here, completely stopped when my treatments were completed. It took me two weeks of detoxing before I could function somewhat normally.
As the days and weeks went by and I started to feel better and the burns began to heal, I began to believe that just maybe things will start getting back to normal … but what is normal? My normal was dealing with the pain of a tumor that I thought was a hemorrhoid. Normal was living on pain killers that did nothing but slightly numb the pain from the radiation burns, normal was going to appointments alone, doing my best to be big and brave because I had no one there to support me. I still struggle to find the new normal in some areas of my life today.
Fourteen weeks post-treatment, I had two MRIs done—pelvic and abdominal. The results showed me as NED. God is good. At six months post-treatment, I had repeat biopsies done in the OR which indicated that no cancer cells were present. I did it with the help of my care team, I BEAT CANCER!!
Today, I still have some residual side effects of the chemo and radiation, mainly in my hips and legs, my eyesight got worse, I am having some thyroid issues, and I had to have a total hysterectomy and I did lose all my hair, which is finally growing back. Despite these lasting issues, I am so thankful to be alive and cancer-free. I am an ANAL CANCER THRIVER.
The Anal Cancer Foundation website has been a huge source of information for me. I am now volunteering as a Peer Support Mentor for others who are on this journey.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.
