This is my story, and luckily for me, it is a long story. It begins in 1981 when I was 31 years old. With my husband Joe and my two children, Michael (5) and Helene (3), I had just moved back to Cherry Hill, New Jersey and was settling in with a job, day care, and resuming friendships in the area. I looked well, but I didn’t feel well and things seemed to be getting worse. I had persistent pain in my lower back. I was tired. My bowels varied from constipation to diarrhea and back again. I couldn’t sleep, and so my quest for help began. It took about six months before I had my diagnosis.
First, I suspected a problem with my IUD, so I began with my OB/GYN. He found nothing wrong and sent me to an urologist. The urologist told me that ‘all women my age complained about these things’ and sent me on my way. My symptoms seemed to get worse. My mother finally convinced me to call her internist and I was able to get an appointment with an associate of his. Finally, with evidence of rectal bleeding, she sent me to a gastroenterologist, Dr. Scott Wright, who sent me for a lower GI.
Imagine this, you are 32 years old now and you have spent six months going from doctor to doctor. You at the hospital for a lower GI and the first set of films are done. You are asked to wait and called back in for more films and asked to wait and called back again and asked to wait. You look up and you see your internist walking across the room to where you are waiting. Instantly you know that something very serious is wrong. She approaches you and says that there is a large tumor, about the size of a lemon, in your colon and that it is most likely malignant. You will need surgery and all you can think is that you are going to die. That is exactly what happened to me.
A week later, I was in the hospital. Dr. David Paskin, surgeon, removed about half my colon, lymph nodes and a metastasis on my liver. My prognosis was about six months. I was introduced to Dr. Ed Viner, an oncologist who made all the difference.
He consulted with other doctors and with NIH and he prescribed an aggressive chemotherapy protocol that I received in his office over an eleven month period. I received three drugs, 5FU, BCNU and Streptozotozin on a five week cycle, one visit a week for four weeks and the fifth week daily treatments. Sometimes when I arrived at Dr. Viner’s office for treatments, I would be met by a counselor from the Hospice and we would talk while I waited.
My husband, Joe, did research and found books by the Simontons and by Bernie Siegal. I used these to integrate healing meditation and positive thinking into my treatment plan.
And so it went, I returned to work and lived day to day. I developed relationships with my doctors that turned out to be long term support for me. I went for counseling and I learned to meditate. I took vitamins, gave up red meat, and tried to maintain a walking regiment. I soaked up the support of a loving extended family and friends.
Oh, it wasn’t at all easy. I was overcome some days with terror and fear. I felt safe with the covers pulled over my head. I didn’t have any role models of people who had survived colon cancer, but I did believe that the longer I could keep healthy, the more treatment options would improve and the more chance I would have to survive should the cancer return. I had a very strong desire to raise my kids. I didn’t want them to have an opportunity to forget me.
The first year ended, cancer free. In the second year, I had an obstruction and returned to the hospital for surgery. It was scar tissue and the surgery provided my doctors an opportunity to see visually that there was no evidence of cancer. They were thrilled for that look. I was mad as hell, but recovered.
I returned regularly for tests and the days turned to weeks, the weeks to months and the months to years. Just like that, I maintained enough superstition not to celebrate the milestones, being unwilling to flaunt success, but Joe and I couldn’t resist a 25 year celebration with Dr. Viner and his wife. Everything seemed fine.
Two weeks later, during a routine colonoscopy a tumor was found to be embedded in my colon. It couldn’t be removed during the colonoscopy. Surgery was required and in November 2005, my colon was again resected and the malignant tumor removed. The cancer was contained and no further treatment was needed.
But around March 2006, I noticed tinges of blood when I urinated. I can thank the colon cancer for saving me this time because I might have ignored that little bit of blood had it not been for the recent surgery. It turned out to be endometrial cancer. In April 2006, I had a hysterectomy. And again, I was lucky. There was no sign of the cancer in the uterus and no follow-up treatments were recommended.
I had, up to now, resisted suggestions that I should have genetic testing. But after the endometrial cancer, I decided that I should have the testing done. It turns out that I have Lynch syndrome or HNPCC, the MSH2 variant. This variant is reported as ‘positive for a deleterious mutation.’ HNPCC increases the lifetime risk of colorectal cancer to 70-80% and approximately 45% of people with HNPCC will have multiple colorectal cancers. In women the lifetime risk of endometrial (or uterine) cancer is 40-60% and risks of other cancers are also higher than the general population. My children, sisters and first cousins have been or are being tested and we know that the mutation comes from my mother’s side of the family tree. Those who know can get the regular screenings they need.
So here I am today, almost four years past the second colon surgery and three years past the endometrial surgery and again taking things day by day and hoping that I have another 25 or 30 years in me. This time I have not just kids (all grown up) to keep me going, but two beautiful granddaughters who I would like to see grow up. And so much to do and see and learn and share.