I was 47 when I learned I had a genetic mutation that led to an especially vicious form of colorectal cancer.
By then, I also had three children, and one key job as their mother: Protect them from harm.
Intellectually, I knew it wouldn’t be my fault if one of my girls inherited the familial adenomatous polyposis (FAP) mutation. But that knowledge was no consolation at all when I opened the test results to discover that my first-born, Victoria, had the trait. Her younger sisters did not.
“Of course it should be me,” Victoria, then 17, said when I broke the news. “It would be cruel to give this to my little sisters.”
Victoria had no illusions about what this meant. I started chemo very quickly after my diagnosis, and on a school break, she drove me to one of my three-hour infusions. As is her nature, she squirmed her way into the recliner with me, started a movie, and we promptly fell asleep.
When we woke two hours later, we found that the nurses had kindly covered us with a blanket, and that our mother-daughter bond was the talk of the infusion department.
For the last seven years, Victoria has endured annual colonoscopies and endoscopies. She was prescribed Celebrex, an anti-inflammatory known for decreasing the size and number of polyps in the colon. We were told it takes just one polyp to mutate into cancer. We sometimes felt as if we were playing Russian roulette the last seven years, praying that a polyp didn’t mutate. When the time was right, the colon and rectum would have to be removed. This, I can tell you, is exactly as daunting as it sounds. It’s huge surgery, and healing is slow and painful.
Now, the time has come.
Victoria has never complained or felt sorry for herself, at least as far as I can tell. But she worried about dealing with a temporary ileostomy while the surgically created “j-pouch” fashioned out of her small intestine heals well enough to take on the job of storing and passing stool. I’ve constantly assured her that she’ll have excellent nurses to teach her and she’ll have me at her side, with experience, every step of the way.
But even more than that, I prayed every day that Victoria would not have to endure all of this. I meditated about it, set my intentions, called out to the Universe and Mother Nature.
And last month my prayers were answered, at least in part. When we met with her surgeon to set the date and finalize presurgery details, she told us that Victoria’s recent colonoscopy was remarkable. Very few polyps and the colon looked good and healthy.
This gave the surgeon and Victoria options. Although Victoria will still have her colon removed, she will no longer require a j-pouch and she will keep her rectum – huge victories for FAP patients. And no ileostomy! She can have the colon removed laparoscopically, which is preferable to an open incision as she will heal faster and won’t have major scars.
Living without a colon requires adjustments. Since she will keep her small intestine, she will still be able to digest food, though she will process it much faster, as one of the colon’s functions is to store processed food until it is ready to eliminate. Adding fiber to her diet and eating small meals throughout the day will help with the fast digestion. And she will have to stay well-hydrated to compensate for losing the colon’s role in that process. The biggest postsurgery risk is something that I and other FAP patients have faced – desmoid tumors that can form in the connective tissue. These are painful and dangerous.
June 20, 2019, is the date of her surgery. She’ll have the same surgeon I had, a remarkable person whom I’m so happy to have in my life.
My emotions are so many and so varied, though I try not to dwell on irrational guilt. What I do allow myself to feel: Thankful – that she will never develop FAP colorectal cancer. Scared – about the pain I know she will experience upon waking from surgery and how she’ll react. Anxious – about the possibility of desmoid tumors developing after surgery. Hopeful – that she will heal quickly and have a healthy, happy future ahead of her.