I am the luckiest woman in the world.
How is that possible you say, for someone diagnosed with anal cancer at age 59? Pull up a chair and have a cup of tea with me as I share my story.
I am a registered nurse for almost 40 years, thus I am aware how health can be impacted by life choices. My mother was an advocate for nutrition and made certain we had a balanced diet with nutrients. These habits carried over into adulthood, indeed, my favorite food is spinach. I was perfectly healthy upon diagnosis, suffering only with menopausal hot flashes, treated with an estrogen patch and progesterone. I moved to Florida from the DC area about 15 years ago, with my husband, who had already retired. His wife died of cancer in 1992, we met two years later, and married in 1996. I consider myself so fortunate to have a ready made family, complete with grandchildren!
It was Divine Order that I had a colonoscopy in 2013. Since we were itemizing that year, I decided to have it done a little early. I had no real symptoms when I had my pre op visit, but in May, I started noticing little 'pin prick' type anal pains, especially during a long car ride. These occurred only about three to four times, and I mentioned them to my doctor before I went to sleep for my colonoscopy on June 6.
Afterwards, he informed me I had a flat polyp and he could feel the mass easily, but it was difficult to find with the scope, because it was so small. He finally had to use a small scope and turn it backwards to do the biopsy. I knew the term 'flat polyp' was not good, having worked in endoscopy. Pathology took longer than the usual three days, which was ominous. My doctor's office called and insisted I take the day off and come in early that Friday.
Getting the diagnosis of cancer, especially when one is so healthy, will hit you like a fist in the stomach. Our GI physician is a wonderful, caring man, so he had prearranged for me to immediately see the top oncologist in the county. The next week was a whirlwind of activity, with second opinions, PET/CT scan, radiation planning, wig shopping, (just in case), dental visit, and port insertion, by my favorite surgeon who worked me in after his schedule. (See how lucky I am?). I am also fortunate to be acquainted with the top radiation oncologists, having worked with them in the hospital. The final diagnosis was stage I, with a 1.5 cm tumor at the anal verge (again, lucky!).
In the interim, I scoured the Internet, until the wee hours, like any good nurse would. Treatment almost didn't occur after what I read online, I remember crying at 2 am to my husband that "I just couldn't do it". The always rational one, he encouraged me to wait until I spoke to the radiation doctor. Horrible stories of third degree burns, unbelievable pain and agony tormented my thoughts. Relief came when I spoke with Dr. B and learned that there were ways to mitigate the side effects.
Less than three weeks post-colonoscopy, treatment started, and my husband accompanied me to every visit. My treatment team was my family, so to speak, since I personally knew many of them. I was told I might lose some hair, mouth sores were possible, nausea etc. My radiation oncologist was very reassuring in that the IMRT radiation would be targeted, so he would avoid my bladder, and hips, for the most part. I would be getting HDR brachytherapy for the final radiation boost.
When my hair started falling out I chose to get rid of it, and purchase the wigs I had preselected. In Florida, synthetic wigs never droop like real hair, so I was always perfectly coiffed! I personally loved this benefit! And, I did not have to shave my legs or underarms for about six months, really nice! My eyebrows and eyelashes remained intact, and I elected to use no makeup while undergoing treatment, to spare the abuse of removing it or any risk of infection.
Daily, before radiation, I would soak in the tub for 45 minutes, to ensure all of the creams were removed, and help the healing process. I used this time to reflect and to pray for others with this disease, thanking God for letting me find it in the early stage and for my wonderful doctors, nurses and techs. This was a powerful element to my recovery.
The worst part was having a BM. Unfortunately, they happened several times a day, but I experienced very little diarrhea, probably due to the twice-daily probiotic that my health food store friend recommended. Even with stool softeners, going to the bathroom was excruciating, but the pain passed shortly after each movement. I drank many bottles of water daily, and did not suffer with cystitis. (Really, really lucky!) This had been a big fear.
I had mouth sores with each round of chemo, and my bone marrow suffered as a result, necessitating two units of blood and white cell stimulation with neupogen shots. In spite of this, I never had to be hospitalized, or got an infection, because I washed my hands constantly, and followed other nursing measures to prevent infection.
My best friend Barbara encouraged me to join an online support group, and I chose 'Blog for a Cure' since they seemed to have many supportive people affected with AC. Through them, I discovered several other online resources. One of which you are on right now! So, being a nurse, I made a care plan for myself, gleaning information from fellow AC patients on the blog, previous nursing experience, and my provider input.
Because of this I was asked to appear on a local TV show, 'Navigating Cancer', now on You Tube. I wanted to share my experiences and encourage others through the process as well.
Emerging from treatment, I now know of my inner strength, and what the human spirit can endure. My husband and I survived this trial together, sometimes I think it was harder on him to watch me suffer, and he offered to take my place if he could. (Lucky to have a husband like that!). The love between us is deeper than ever, and life is sweet. I now really comprehend the fear that my patients experience with cancer and take nothing for granted.
At 17 months post-treatment, other than a little vaginal stenosis, and some stubborn bone marrow, I am pretty much my old self. I have checkups every three months. My hair that grew back curly (yes!) is back to straight. Oh well, I still have wigs in the closet!
To anyone reading this, I encourage you to help spread the word that a vaccine can prevent this type of cancer and others caused by HPV. It was not called HPV back then. I was told I had cervicitis, and treated with cryosurgery, in my 20's. I know now that this was the cause of my cancer.
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.