My name is Bonnie Parker. I am a nurse and I am 62 years old and was diagnosed with Anal Carcinoma on April 7th, 2022. I was Stage IIIA with a less than 2 cm lesion and 2 lymph nodes that were involved. They said I was T1N2M0.
At diagnosis, I was at the healthiest place I had ever been in my life. I was at a healthy weight and I had cut out sugar and wheat from my diet. I do not drink, nor smoke and I worked out every day. Little did I know that I was going to be diagnosed with a cancer that was caused by a virus in addition to being a cancer that I did not want to even acknowledge due to its location.
I had minimal symptoms; occasional itching where I had a small fissure and some blood when I wiped now and again. What was new was a skin tag that appeared in January of 2021 (I had just had a colonoscopy in October 2020). I thought it was odd that it just showed up so I made everyone who I had appointments with look at it; my dermatologist, my colonoscopy doctor’s PA, my GYN doctor, etc. Everyone said it looked harmless (it was but I have recently read that sometimes they appear when a fissure is trying to heal itself). I had planned on a European vacation in June that year after which I planned to pursue a career as a travel nurse in the operating room.
I wanted to make sure I had taken care of any loose ends before June so after conversations with one of our colorectal docs, they suggested I come in and get checked. They biopsied the skin tag which proved to be nothing. My doctor also asked how long I had the fissure for, one edge of it was hard and that concerned him. He took some scrapings of my anal canal and I was on my way. Convinced that I would get benign results I proceeded as if the big plans in June were going to unfold, but, the universe had other ideas. The scrapings came back positive for abnormal cells related to HPV and my doctor said he wanted to take a better look inside in the operating room so I scheduled an EUA where he looked and took a biopsy of a lesion. A week later when I received a notification that test results were in, I had no idea I would be reading that I had Anal Carcinoma related to HPV 16. It took my breath away. Fast forward thru the chaos that happens when you are diagnosed with cancer and your doctors are scrambling to get you in for tests etc…I had a CT Scan and a PET scan within a couple days which both confirmed the presence of the cancer and that 2 nodes were affected.
As a nurse, I immediately went to the fear place. When Lymph nodes are involved that means that something may have spread beyond them since they are the gate keepers of our drainage systems. I met with the hematology and radiation oncologists at our cancer center where I worked as a nurse. They both said they felt it was curable and that the protocol that was gold standard today was the Nigro Protocol. When diagnosed with cancer, you are in fear and so is your family so everyone suddenly wants to help. I received a lot of suggestions about what to do and where to go; MD Anderson, Fox Chase, etc…but, if the protocol is the same wherever you go, I wanted to go close to home and keep my routines and home life as stress free as I could considering what was in front of me.
I had my port placed and began treatments on May 2nd, 2022. On June 13th I rang the bell after my last radiation treatment; I had received 2 weeks of chemotherapy and 6 weeks of radiation. I was wearing a diaper under my jeans and was grateful that I had survived to that point. The treatment was rough. I had 3rd degree burns of my anus and surrounding area. The chemo made me nauseous and caused my teeth to be ultrasensitive. Continence was a crap shoot (no pun intended). Throughout this I still worked out and went for walks in the sun every day. I met up with friends and I tried to stay as close to my “normal” as possible. Emotionally I was scared to death. I was afraid I was going to be in the small percentage of those that do not survive (I went to Dr. Google in spite of being warned not to). I would shop for something and wonder if I would be alive to enjoy it down the line. My partner Kevin of 17 years and I cried a lot those first couple of weeks, but together we got through it and tried to proceed with our lives assuming I was going to get through this. This is really important; once the dust settled after I heard the diagnosis, treatment, and start dates, I got really quiet with myself. I heard my inner voice, the same one that kept telling me to get the skin tag checked, my inner voice told me that there would be a silver lining in all of this, I just need to wait and be patient.
Within 3 weeks of my treatment ending, those burns had healed. In 4 weeks, I went to an Elton John concert with a diaper on under my jeans, but I went and had an amazing time. I did not know if the treatment had worked but I did know I did my best through all of it and was now on the other side. I had stopped working mid treatment and returned about a month after it ended. My first PET scan and anoscopy and DR exam was scheduled for September. They were clear. I had done enough reading to know that the first couple of years are crucial for monitoring due to the possibility of reoccurrence. Since then, I have had 6 month CT and MRI scans in addition to anoscopy and DR exams every 3 months. So far, so good - all have been clear.
This cancer is not as researched or known as others. My guess is, it probably ramped up in the 1960s and it is those generations that are showing up with it because by the 2000s the Gardasil vaccine had been developed and is hopefully going to reduce the spread of HPV. There are no black and white answers, nor are there any guarantees. There are patients with horrific tumors that go on to become and stay disease free and then there are those that have the bare minimum of a tumor that proceed to Stage IV. This is not meant to scare anyone; it is just the truth. Everyone responds to HPV differently, and everyone’s AC may respond differently to the treatment. Cancer is clever and it wants to kill us. All we can do is the footwork to try to outrun it.
My director at the time offered to come with me to those early appointments. I needed a mom and a nurse and she was exactly what I needed. She was patient and loving, supportive and caring. She asked the questions I couldn’t and remembered the answers I needed to know. She told me she only wanted one thing from me and that was to give back to the cancer community. I found the HPV/Anal Cancer Foundation Thriver to Thriver Connection program this way. I filled out a questionnaire and was contacted by Laura Lazar. Since then I have been connected to 5 or 6 other 50-60 something female AC patients who were in different stages of their treatments or recoveries. Each one has been a gift to me.
The biggest gift of all is the non-tangible gifts aka the “silver lining” of finding out what was truly important to me. The people that I loved and my relationships with those people. All of my important relationships in my life grew stronger and deeper. My love for my life and myself grew richer. I have also become a better nurse – the kind of nurse I would want to work with. I can identify with my cancer patients and honestly say, I know how they feel. I realized that life truly is precious and while I thought I had been doing all the “right” things to guarantee that I lived a long and healthy life, the universe had other plans, not necessarily to not have me live a long and healthy life but definitely to “shake things up a bit” at the very least. Honestly, if someone came to me today and offered me a million dollars to take the cancer back, I would not give it back. Yes, it could come back, it could metastasize, I could die from it, but, this last year and a half of my life has been one of the most amazing experiences of my life so far and I am not wiling to give it up. The leaves are beautiful, the trees sound soothing, the birds sing sweeter and my gratitude grows daily. If the cancer comes back, I know what to do. Will I be scared? Yes. That’s ok because I will put my big girl pants on and meet it head on. Hopefully, this won’t happen, but if it does, I know I got through it once and I can get through it again and so can you. Fellow thrivers listen to your inner voice and be your own advocate. This is not a death sentence; this is life on life’s terms. Don’t say why me, consider, why not me? Lastly, do not look at how far you have to go, look at how far you have come. No matter what, everything will be ok. We can do hard things.