In May 2008 I was 49 and was in top physical condition. I hiked several miles a week, enjoyed a vegetarian diet that I had been on for 10 years and never smoked and very seldom drank. I had a good job and had no history of HPV or any other type of disease.
Ironically, I had tested positive for the BRCA 1 mutation four years prior as my mother and sister had breast cancer. I decided to have a prophylactic mastectomy and a hysterectomy in order to avoid the high risk of getting this disease. I recovered quickly and had reconstructive surgery and never looked back. I thought that I was clear of cancer and could move on without fear.
Being the cautious vigilant person I am, I decided to have a baseline colonoscopy before my 50th birthday. I dreaded the prep but decided to 'cowgirl up; and get it over with. I had no symptoms of anything.
When I awoke up my gastroenterologist said he found a “tumor” and it was small but he wanted to be certain it was nothing. The following day he called to tell me it was anal cancer and gave me the name of an oncologist. Shocked I made an appointment and found I had stage '1 or II' anal cancer most likely caused by HPV though they did not type it. I met with a radiologist and started the Nigro Protocol treatment three weeks later.
I did quite a bit of research and found out the particulars of this cancer and how in many ways not that much was known about why people got it or why their immune systems failed to suppress the HPV virus, even though so many people like me were very healthy and had no real risk factors. I corresponded with other people who like me were very healthy, had long marriages or monogamous relationships and no recent history of HPV.
The treatment was pretty brutal in my estimation. The first week after undergoing five treatments of radiation, I was extremely fatigued. I was fortunate to not have to work during my treatment. The last ten days were the most difficult as I was severely burned and was in quite a bit of pain. My radiation oncologist was wonderful and skilled in helping me get through the treatment, by providing me with pads they gave to burn patients that had a specific type of lubricating medicine that soothed the skin. I wore them after each treatment.
After I was finished I found the real recovery was just beginning. The effects of the radiation included stricture of the vaginal canal, unrelenting fatigue that lasted for over two years, and a medical community that was lacking in support and follow up of these issues. Fatigue…hmm can’t help you with that…your blood counts look great. Impaired ability to have intercourse...here is a dilator…start using it.
One doctor suggested having sex three times a week would be helpful...('he' had to be kidding me!!!). Ridiculous and invalidating is how I found the medical community. I found a new gynecologist who specialized in oncological gynecology and through his PA who is female, found someone who understood my issues and was well versed in helping me. She did my first pelvic exam and instructed me on how to make intercourse less painful. This turned out to be not that difficult, and with her help and my own persistence, I soon returned to almost as good as new.
The fatigue was really almost overwhelming at times and I remember thinking that I could not go feeling the way I was. I think that as survivors we are so brainwashed into staying 'positive', that we brush our feelings under the rug. We just want to be done with this embarrassing cancer that we cannot even say the name of. If you ever want to stop a conversation say that! I kept the 'real name' of my cancer a secret from everyone but my immediate family.
My boyfriend and partner of eight years and I, struggled to figure out 'how contagious' this was. What should we do or not do next? I felt terrible and that I had given him a possible death sentence. We researched endlessly and found out how much the medical community did not know. So you carry something that you cannot be tested for unless it is 'active', and you probably will not know if it is active, as there are usually no symptoms…unless it is cancer…and then we can help you…if you discover it in time…awesome for me. Oh and by the way, if you do have it, your immune system will normally take care of it...unless it doesn’t.
I am now seven years as of August, post-treatment and I feel I am changed. Not in a horrific way, but rearranged, like any person who has undergone a life threatening experience. The pieces are there, but they are not in the same order as they once were. I don’t think of cancer as a gift. I didn’t need it in any way to teach me how lucky I am, or how many people loved me. That was not a revelation in any way for me. Because I lost my mother to breast cancer when I was 25, I knew all of this. I also knew life was short, we have only this moment, and to stay in the present.
I tired quickly of feeling like I was 'flunking cancer' when I did not feel positive and everyone else instructed me to just stay 'chipper' and be a 'trooper'. But I now know that everyone handles it their own way, and we are all trying to just make our way through the best we can. That was the 'lesson', if there must be one, for me.
Since becoming acquainted with Anal Cancer Foundation, I know that we must become more pro-active in putting a face on this disease and how it can affect anyone. HPV caused cancers are growing and it is not limited to anal cancer. I so applaud the efforts that they have made in recognizing the need for studying the HPV virus and educating people on the type of cancers that are caused by it. I am glad to be a part of such a devoted community and am fortunate to be able to have the privilege of sharing my story.
Sharing your story will help dispel the myths associated with the disease. Contact us if you want to be featured on our Thriver Stories!
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.