Six years ago this summer, my doctor called while I was out having lunch alone. He told me the results from my colonoscopy were not good, and they biopsied the tumor, confirming it was anal cancer. I actually had hours to reflect as my husband was not home; he would get the news first. So, for 10 hours, I thought about who I wanted to be.
I thought of the people I knew with cancer or some other horrible diagnosis. I decided I wanted to be like my friends Linda and Becky, now cancer-free but with incredibly positive attitudes. Then I wrote a letter for my boys, siblings, and very close friends. I told them exactly what I knew and what would happen. I told them I was struggling and not yet ready to talk. I eventually made a closed Facebook page because people don't call just once, do they?
As the appointments added up, I started notebooks with all the handouts and recommendations. I contacted the ACF and asked for a coach. That really changed things!! She would share something that to her might seem insignificant, like going home from radiation in an Uber with her pillow so she could lay down in the back seat! To myself, I said, "I can do that?" I spent many happy hours in the back of our car with the sun on my face, music on the radio, and my husband understanding.
As the cancer spread and the second round of chemo started, I was still just putting one foot in front of the other. But the day my platelets prevented more treatment, I got this clue that I needed to play a bigger role in my treatment. My husband found one of the top doctors in the field, and off we went finally for that second opinion. There was a clinical trial, and I was thrilled that it was for immunotherapy because I had heard about the miracles it could bring for lucky people. We started getting in the groove of our flights to Nashville, looking up friends, driving around to see the sights, etc.
COVID hit, and maybe luckily, as I was responding so well, I left the study to stay close to home, and insurance kept on paying. I read voraciously. I made friends in the forums, and friends called me because they knew someone with the same rare cancer. I started feeling like a miracle. I had very few side effects, I had friends, I was doing art, and finding fun moments all over—acts of kindness done for me and later I was to do. Life took on such meaning. The fullness of life was as important now as the length of life.
Now as I am rounding 5 1/2 years of pretty stable tumors, my doctor and I decided together for me to go off treatment. I will be 76 next month. My son and his wife are having a baby in April. I took that off my bucket list so I would not feel sad, and here we are, now looking forward to another miracle. I like me better, I am stronger now, I can handle it. Don't get me wrong, some of my friends have died. I feel guilty and like I have to live better for all of them.
My chief advice, get a second opinion, be open with others, and you will be surprised who you help. And keep looking at all Eastern and Western Medicine have to offer. Read Radical Remission and look into diets to beat Disease and study the gut biome!
A word about the picture. Losing our hair is always so much bigger than just that. It shows the world your vulnerable self; you look sick to the world. You can't kid yourself when you look in the mirror. A friend brought me a cheap Amazon wig in purple. I got another one in white. I rocked it and felt a combination of ..."I am not pretending I don't have cancer, but I am having fun with a silly wig."
One night I wore the purple wig out to a restaurant. The woman at the next table with a little girl caught my eye and said "I have to apologize for my little girl, she can't take her eyes off your hair." Without a second thought ,I laughed and told her "It probably reminds her of my little poney's tail!" More and more people spoke to me when I wore the wigs, always with a look of sadness and admiration. They knew but they saw the fight left in me. To this day this is still one of my favorite pictures to remind me of how I made lemonade.
