Diagnosed in 2009 at age 42

Woman with blonde frizzy hair smilingMy story began in November 2009, when I thought I had a hemorrhoid. I remember driving to my sister’s house over Thanksgiving and trying to sit on one side because it felt like something was there. A week later I had my annual OBG appointment and she performed a rectal exam. She assured me that it was NOT a hemorrhoid and that I should get it checked immediately. From that point on, everything happened so quickly that I felt like I was living a nightmare.

I was quickly scheduled for a colonoscopy. In my groggy recovery state, the doctor told me that he was pretty sure that it was squamous cell cancer of the anus. He explained that treatment is only for a few months and that I would be 'fine'.  One week before Christmas, the biopsy confirmed his diagnosis, stage two anal cancer. The next thing I knew, I had appointments scheduled with an oncologist and a radiologist. Pet scans, CT scans and surgery to install the chemotherapy port were all quickly scheduled and completed in a blur. I was told that I might lose my hair and that I would be forced into menopause (at age 42). Other side effects would be minimal and I would be 'uncomfortable' for the next few months.

My treatment began on January 18, 2010, my father’s birthday. Terrified of what to expect, my husband and parents accompanied me to the oncologist to receive my first dose of chemotherapy (mitomycin). A pump was then hooked up to my port and a bag of Fluorouracil (5-FU) was set to slowly drip for the next 5 days. I left the oncologist’s office with my bag in a little pouch that I would carry everywhere with me. I then went down the hall to receive my first radiation treatment.

After being tattooed with little dots so that the technicians could align me with the machine, I was then covered with a gown and placed in a frog-leg position: legs wide open and feet touching at the soles. Whatever modesty I had was quickly abandoned as I had to hold the position for 20-30 minutes every weekday for the next 4 months. I tolerated the first week with little or no side effects—taking anti-nausea medicine only a few times. The diarrhea started pretty much immediately and became more frequent as the treatments progressed. Fatigue set in around week 2. The second round of chemo (week 5) was when my body reacted to everything. The chemo gave me terrible mouth sores that hurt so badly I could barely eat or drink. I had diarrhea after everything I ate and the radiation was burning my skin. It was extremely painful to even urinate and it hurt to sit down. I also had intense itching for pretty much the entire course of treatment, which was later diagnosed as a very bad yeast infection.

Several days after finishing with the chemo round 2, I came out of the shower and my long hair was knotted into what looked like dreadlocks. My hair had been falling out in clumps but this was when I knew it was the end. I bought a wig that resembled my hairstyle and didn’t think twice about it.

Somehow I made it through the radiation and my cancer was gone. That was when I felt like I could breathe again. That was when I mourned my old life, missed my hair and felt sorry for myself. But I was thankful to be alive.

I am now cancer-free for 5 years and was just released from my oncologist. Aside from a few permanent life-altering side effects, such as vaginal stenosis and pelvic stiffness, I feel healthy and am pretty much back to my routine. I am grateful to have had such great support from my family and friends and would like to help others dealing with this rare disease.

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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.

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