By Pauline Sager
How did it start? It was in the late 1990’s. I had always been good at going for my annual PAP test with my doctor, an internist. But this time, she called me and said that the pap test was abnormal. I did not think too much about it. It is not uncommon for tests to be wrong. But I was referred to an OB/Gyn doctor. He repeated the test and then said I needed to go to the hospital for a minor procedure as I had some pre-cancerous cells on my cervix. It was not a big deal. It was over fairly quickly, and I thought that was the end of it. It was the first time I had heard the term HPV virus. I had no idea what it was. I was told it was a sexually transmitted virus with which almost every one of my age group had come into contact.
I moved to Bozeman shortly after that, and found a great new OB/Gyn doctor. My next PAP test came back showing abnormal cells again. With further observation, my doctor, saw cervical lesions and performed a “LEEP procedure.” This was uncomfortable and took longer than either of us expected. However, she was sure that this would be effective. My next few pap tests were normal. I was always a little apprehensive about getting them done “just in case”, but each was normal and I began to stop worrying.
Five years later, I spent a month in Southern California, taking care of my newest granddaughter when her mother returned to work. Two weeks into my stay, I began to notice some blood when having a bowel movement. Hemorrhoids, I thought. Perhaps a fissure. Towards the end of the month I was starting to feel unwell and have diarrhea. My husband drove down so that we could drive home together. I felt really unwell. We arrived home three days before Thanksgiving. I decided to wait until after Thanksgiving to try to see my internist. On Thanksgiving Day, while in the kitchen making cornbread dressing, I found myself standing in a pool of blood. My husband immediately took me to the Emergency Department at the hospital. The bleeding seemed to stop. A scan revealed a mass in the lower sigmoid part of my colon. I had had a colonoscopy only 11 months before. The GI doctor on call said it could not be colon cancer, so I was sent home with antibiotics to take if I needed, and told to call the GI clinic on Monday.
On Monday, the GI clinic said they could not see me for 6 weeks. I called my internist’s office and they said they would see me the next day. We tried the antibiotics for three days and I went back on Thursday feeling a little better with less bleeding. On Friday, there was another pool of blood. I called my doctor who immediately admitted me to the hospital. I am so grateful to him for his quick action and concern. I had a colonoscopy the next day, and indeed there was something abnormal, but it was not colon cancer. The biopsy was due back on Tuesday so I was discharged Sunday and did not worry. I had just got out of the shower late morning on Tuesday when my husband appeared with the phone. The GI doctor’s first words were “has anyone called you?” I had cancer. It was a squamous cell cancer, as the cervical lesions had been. The doctor’s fear was that it had migrated from the cervix. My OB/Gyn doctor was involved in the discussion and she saw me the next day for a detailed examination. No, it was a new cancer.
I was seen at the Bozeman Health Cancer Center and also at the University of California San Francisco Medical Center. It was an anal cancer, caused by the HPV virus and was at stage 3. How could this happen so quickly? Treatment started almost immediately. I was to have 7 weeks of concurrent chemotherapy and radiation. I thought to myself that this did not sound bad. Anyone can get through 7 weeks of treatment. Chemo was first on the first day – an infusion of one drug. Then radiation (which was daily), and then a second chemo which was a pump that I carried with me while it continually sent a chemo-drug into me for the next four days. I slept with it on the pillow. It was mostly silent but made a whirring noise every minute or so. My poor husband would lie listening for it, fearful that the pump would stop working. And, if there was a spill, he was given a small ‘hazmat’ kit: heavy rubber gloves, and instructions on how to clean up any mess. It was a hazardous substance, but it was being pumped into me.
The chemo regimen was repeated three weeks later. Meanwhile, the radiation burned my groins and I needed strong pain medications. The doctors and nurses were absolutely wonderful. I had to take three baths a day so that the running water would help with healing. The tiredness was so different from any tiredness I had ever felt before. It invaded every cell. My hair started to fall out. After the second round of chemo I was so sick that I was admitted to the hospital. The radiation treatments made me progressively weaker and some treatments had to be delayed a day so I could recover. With three treatments left, my appendix became infected and I had to have an appendectomy. I could not eat. I lost 26 lbs. But I was alive. The other good news was that the scans and surgery for the appendectomy showed the cancer was gone. I did not have to take the final three radiation treatments.
Then began the task of getting well again. It took so much longer than I expected. I am fortunate to have a very supportive family and amazing friends. I am so grateful to the Cancer Support Community, Montana. This wonderful organization here in Bozeman offered me comfort, support and a positive way to get back into life through exercise and other classes. Gradually my burns healed. I got stronger and learned what I could eat and what was more challenging. I still cannot digest green vegetables such as Kale and Swiss chard. Intimacy had its challenges and without the most loving and supportive husband, would have been so much more difficult. Radiation causes vaginal atrophy.
Cancer changed my life in so many ways, and that of my husband. At first, being told that I had a cancer that was transmitted sexually made me feel less than good about myself. Both my husband and I had been previously married, so we both had had many possible exposures. How had I contracted it? Would the answer to that make any difference? No – so move on and try to get through the treatment. At first I heard that the HPV virus was responsible for cervical cancer. I had no idea that it could cause any other cancer. Anal cancer is even harder to talk about. It is really painful. Most women contracting it were smokers. I had never been a smoker. Why me?
We contract HPV because we are human. I have learned that it is a very common virus and that we, outside the medical community, hardly know of it. But there is now a vaccine. From now on, no child needs to be diagnosed with cervical cancer, or vaginal, penile, anal, or oral cancer, because HPV is the cause of these cancers too, and perhaps more. Why would we NOT vaccinate our children? For the rest of my life I will do everything I can to prevent anyone from going through such a cancer. It is not going to make our children sexually active at an earlier age. Even if they are chaste until marriage there is no guarantee the person they fall in love with and marry has been. We cannot control our children from being exposed to this virus. We CAN control their resistance to the virus. The vaccine can stop cells from mutating into any one of a number of horrible cancers that will affect our children for the remainder of their lives or, worse still, rob them of the rest of their lives.