I was diagnosed with anal cancer on March 18, 2021. It all began with a “booty itch” in August 2020.
Early Pandemic Problems
We were all home working in our new “home environment workstations” because of COVID-19, and I recall my butt itching often, especially at night. I thought that it might have been caused by wearing my bathing suit too often and too long, as I juggled professional work and backyard fun with grandkids in the pool during the early months of the COVID-19 pandemic.
I’d just had my yearly gynecologic check-up in June 2020. The Pap smear test was clear, with no evidence of human papillomavirus (HPV) infection (a common cause of anal and cervical cancers); I have never had a bad Pap test or HPV infection, to my knowledge. During that visit, my OB/GYN doctor also performed a digital rectal exam, and I’ve never had any problem in that part of my body.
Then, in late November 2020, after going to the bathroom, I saw a small trace of blood. It concerned me, because I still had this itch in my butt. I returned to my OB/GYN doctor and told him what was going on, assuming that it was a hemorrhoid, although I’d never had one before.
After examining me, he said that there was a small fissure from a bowel movement; he prescribed an ointment to put on it, and I was on my way. The ointment did not help, and in January 2021, I had blood in the same place again.
This time I took matters into my own hands and searched online for a doctor who specialized in this area of the body. I found Aaron Parrish, MD, in Los Gatos, California, who is a proctologist (specializing in anal cancer; I had no idea what that meant then), and scheduled an appointment with him right away.
On the first visit, things moved quickly. Dr. Parrish said that I had an abnormal fissure. He tested me for many sexually transmitted diseases (or STDs). I thought that this was odd, but then he asked when was my last rectum Pap smear for HPV infection.
HPV in my butt? A Pap smear in my butt? I’d never heard of such things, I told him. He did the test, and then did a small biopsy in the office. Then, 5 days later, on March 18, 2021, Dr. Parrish called to tell me that the biopsy confirmed the diagnosis of squamous-cell carcinoma of the anal region, meaning anal cancer, caused by HPV infection (P16 strain).
That phone call was by far the worst moment in my life. My mind was blank, my ears closed, and I melted down the wall, sinking into the earth. Life stopped. Everything stopped.
The days after the diagnosis were filled with appointments, scans, pokes, and discussions with many people, telling all my friends, family members, the company I work for, and my co-workers. I didn’t have time to be sad, mad, or scared—there was just too much to do and get done.
About a week after finding out I had cancer, I researched the Anal Cancer Foundation website to learn about the treatment plan I was about to undergo. That’s when I began to coil up, get scared and terrified. I needed to plan for caregivers, help, and to put on the superhero cape, army gear, and go to war against this cancer beast.
On the outside, I stayed and looked calm and collected; you never want others to see you sad or concerned, so I stayed strong facing them, but inside, especially at night or early-morning hours, I would lie in bed absolutely terrified. My husband and my sister, Lisa, were going to be my caregivers as we began to plan for the very intense treatment plan.
My diagnosis was stage II anal cancer; thank God, no lymph nodes were affected. My treatment (in May and June 2021) involved 6-week radiation therapy concurrent with oral chemotherapy (Xeloda tablet) plus 2 IV infusions of mitomycin C. These were the worst 6 weeks of my life. I did not receive the second IV mitomycin C on day 29, because my white blood cell count was too low.
Recovering from anal cancer is tough. The body is flattened to zero. My energy was gone, the wounds and burns are painful, raw, and sensitive, and I was completely done with the entire experience. We had a family vacation planned for mid-July, which was 3 weeks after my treatment, and I was cleared by my doctor to go on this vacation, so I did.
New walls for recovery, and the sound of laughter of family and grandbabies helped my healing. I was wheeled around the airport and the resort in a wheelchair, because I had no strength to walk much so early in my recovery.
The HPV Vaccine
I pray that the youngsters swimming in the resort pool or at the oceanfront that week returned home to get the HPV vaccine after reading the message on the back of my wheelchair. This cancer is so preventable and can be eradicated if all our young people are vaccinated with the HPV vaccine!
Everything about my cancer experience was difficult. The word cancer, and everything associated with it, is such a mind twister. But somehow in those early weeks, I was able to put on the army gear and go to war mentally. As my radiation oncologist would say, so much of cancer is in between your ears.
Your mind is such a force, and you need to stay positive to get you through the treatment plan, daily radiation visits, and swallowing of the chemo pills. Put on your armor, go to war, never give up (even on your worst days) and win the battlefield, kill the beast!
Dealing with Anal Cancer Symptoms
The hourly bathroom runs that a patient with anal cancer goes through are so intense. We must eat and drink daily to stay alive, and similarly, you must also let everything exit via the urethra and the anal area, all the time; and those areas are so damaged, inflamed, and burned for a patient with anal cancer—it’s all just so awful!
I found slight comfort with pain medication and mental routines to distract me in the bathroom. I’d tap my right foot, hold my ears, sing or scream the ABCs, and some of the times I asked my husband or sister to come in and hold me as I went to the bathroom. Just imagine doing that for weeks, day by day, hour by hour—true torture.
During treatment I relied heavily on a vape pen that contained small amounts of THC (cannabis) for dizziness, nausea, and anxiety. I was taking a daily 2,500-mg chemo pill for 28 days, except for Saturdays and Sundays. I was dizzy and nauseous every day. My blood counts, including white blood cell, red blood cell, and platelets, were very low all the time.
I took low-dose pain medication (tramadol) toward the end of treatment. My faith in God was the foundation of getting me through this entire experience. During every radiation session I’d lie there while mentally walking with Jesus on water to get through the anxiety of that experience.
Life After Treatment
And then suddenly, it’s all over! There’s life after your last treatment, as you are recovering. I came to an understanding of a new normal. My life after cancer is a new place for me. I have just received that first call and results from my first MRI showing no cancer, and I’m in remission. This is such amazing news! I’m in a new place in the cancer journey, which I now call “processing.”
I’m just waking up and looking back to reflect on what had just happened to me. You see, I had no time for this during treatment, or even soon after in recovery, but my new life is now unfolding in front of me now. I’m thankful and grateful just to be alive.
You’re Not Alone
I want other patients with anal cancer and any patient with cancer to know that you are not alone. I don’t want another living soul to go through what I went through, but I know this won’t be a reality.
When people enter this dark place of anal cancer, they need to know there’s an incredible group of supporting warriors/survivors who are willing to help, guide, and listen to you during your treatment and recovery.
You are not alone. Anal cancer is a rare form of cancer; it is difficult to find support groups at first, but eventually you find them, they embrace you, and they help you get to the other side.
Tell Young People
I will try to save lives by sharing my story—that’s the silver lining in all of this. My goal is to be a motivational speaker about anal cancer, HPV-related cancers, and the HPV vaccine.
Anal cancer, cervical cancer, and some head and neck cancers are preventable with the HPV vaccine. Sadly, the vaccine was not available when I was growing up.
I would scream from the highest mountaintop to tell all girls and boys: please get vaccinated against this deadly virus; the vaccine prevents certain types of cancer. I don’t want to see another person go through the devastating experience I just went through.