My story starts in 1968. When I was 15 months old my mother rushed my convulsing little body to Children’s Hospital. “You daughter has juvenile diabetes”, they said. Back then they didn’t know much about diabetes, especially juvenile diabetes. They told her that my life expectancy would be approximately 18-20 years. Well, thanks to modern medicine, I am 46 now and my diabetes is under better control than it’s ever been.
Recently I sat down and calculated just how many insulin injections I’d taken over the years. Let’s see, some years it was one injection a day, some years were three injections a day and other years – four injections a day. Drumroll please… I’ve taken over 45,000 shots in my lifetime. And think about this for a moment – at home blood glucose meters weren’t available to the public until the early ‘80’s. So I went the first 15 years of my life that I didn’t have a way of checking my blood sugar at home. WOW, I am truly lucky to be alive. In a way, I believe with diabetes I was being ‘trained’ for my journey yet to come – by learning over the years how to fight disease on a daily basis.
Let’s fast forward to 2010. In 2010 my daughter was a senior in high school. Man was that a busy year!!! We had senior pictures, cap and gown, dances, football games, SAT’s and prom. Then, finally, graduation. My daughter was taken care of and now it was time for me to pick up all those hobbies I’d always wanted to try. I DID NOT think things could possibly get any better. I figured NOW, I could make that doctor’s appointment I’d been putting off for so long… When the symptoms began over a year earlier – I pretended they weren’t there. For over a year I ignored them. Wow, what a huge mistake that was. You see, the only symptom I had was vaginal “pressure” pain during intercourse with my husband. No pain any other time. No blood in stools. No rectal changes at all, just vaginal discomfort during sex. I promise it was no more than a “weird-pressure- feeling”. So I ignored it for the first few months, because it was “just” a minimal ache. You know how we women are – we will ignore that little pain because we’ve too many other things to do. We don’t have time for those doctor appointments. Then as the pain increased, making intimacy almost impossible, I knew I had to schedule that dreaded appointment with the Gynecologist.
My first gynecologist exam won me a trip straight to the gastroenterologist. The first visit to the gastroenterologist won me a biopsy. After the biopsy, the doctor sat me down in the office and said, “Are you familiar with Farrah Fawcett?” I knew right then I was in trouble. I had watched Ms. Fawcett’s battle with anal canal cancer publicized on television. “I believe you have anal canal cancer” he said. I don’t remember much after that. All I kept seeing in my mind was Farrah Fawcett, her pain, losing her hair and finally her life. When I made it home, my mind was racing in thousands of directions. Worst of which, I was planning my own funeral in my head. My body started shaking uncontrollably and no matter how hard I tried I couldn’t stop it.
Three days later I learned the biopsy revealed Colon Cancer. One colonoscopy later, I was diagnosed with Stage IIIB Colon Cancer that started 2-3cm inside the rectum and 4-6 positive lymph nodes. The tumor was as large as an orange and had invaded the back of my vaginal wall. This meant not only would I be having a colon resection surgery, I would also need vaginal reconstruction.
My life at that very moment changed.
In September 2010, I started my 5 week round of 5FU chemotherapy. At the same time, I started my first of 28 daily radiation treatments. It wasn’t easy. To put it lightly, the radiation was horrible. My butt was so burnt that my skin turned black and I had blisters the size of your thumb. I could barely walk the pain was so excruciating. My only relief was a locked door, a box of corn starch and a box fan. I’ll let you paint the mental picture.
No one WANTS to undergo chemotherapy or radiation, but the way I looked at it is that you must “pay” for the things you want. I wanted to be rid of the cancer. So, the question was, “What am I willing to ‘pay’?” The answer was easy. I was willing to pay ANY cost to stay alive. So I looked at the treatment phase as a temporary segment of my life. Yea, it took a year, it was difficult, but I always looked at it as temporary. The doctors told me if I could tough it out I would be okay. So I did.
My abdominal resection/vaginal reconstructive surgery was amazing. I had a surgical oncologist and a plastic surgeon in the operating room during my surgery. The surgical oncologist resected/removed my entire pelvic region… rectum and vaginal canal. He then created my colostomy on the left side of my abdomen. The plastic surgeon then removed a 20″ x 5″ flap of skin from the right side of my abdomen, and used it to reconstruct the exposed rectal region and created a new vaginal canal for me. Amazing, just amazing!!! This procedure took 9 hours in surgery and six months to recover, but now, I am sexually, a functional woman. “Functional” being the key word.
Mentally, I collapsed. Imagine being a young, vibrant, vivacious woman with a sex drive enough for two… to be told one day that sexual intercourse will now be a “possibility” not a guarantee. I could go in to great detail, but I won’t. Let’s just say “sex” is defined much differently now. I’m not ‘gonna lie, it’s been very difficult and of course, there are obstacles… but I am alive and here today to show that even under what you think are the worst of circumstances, happiness and satisfaction can be obtained – both mentally and physically. *smile*
Following my surgery I started the six month FOLFOX chemotherapy regime. It too was difficult, but with anti-nausea medications and sheer determination, I made it through.
In May 2011 I had genetic testing. I found out that I am a carrier of HNPCC – Lynch Syndrome. I am positive for the MSH2 mismatched chromosome. My daughter was tested shortly thereafter and also came back positive. I will remember that day for the rest of my life. My God, I had unknowingly given this gene to my daughter. I sucked up the tears and decided it was time to hit the books. I was always a good student, so now was the time to pull out all the tricks. What I learned is this “knowing” she has HNPCC – Lynch will inevitably save her life. Starting last year, she will be screened annually for colon cancer, and if something were to arise, like a polyp, it would be caught early. Do I still feel guilt for passing this on to her? Passing on an 85% chance of developing cancer – Of course I feel guilty. I think any good mother would. Would I have not had her, knowing the chance of passing it on to her? No way. I’d choose having her every time. And with this new found knowledge of DNA mutations, my half-sister and my father also went in for testing… and both came back positive for Lynch.
To me, having Lynch Syndrome is like living with constant fear. Fear of my own cancer returning, fear for my daughter. But you can’t let fear control your life. Sometimes you just have to let go and recognize the things you can’t change. Happiness is a choice. Today, I do not have the cure for diabetes or colon cancer, but I choose to be happy anyway. I am thankful to be alive. I am grateful for every breath I take. Plain and simple. There is no line too long, no traffic too slow, or no person angry enough to ruin my day.
What am I doing today? Today I am cancer free!!! I am an independent advocate for early detection, screenings and Lynch Syndrome. I am a Volunteer/Buddy for several organizations, helping guide newly diagnosed patients, giving them knowledge, hope and the courage they will need for their journey ahead. Telling my story, sharing my struggles, giving hope and inspiration is without a doubt the most satisfying thing I have ever done.
From the time I was diagnosed, until today, my life has completely changed for the better. Cancer and the knowledge of Lynch Syndrome have made me open my eyes and see the beauty in life. I wake up with only two things in mind…Check my blood sugar and enjoy another day, because you never know when those days could be taken away. I have lost many friends to colon cancer. I am lucky to be alive and that is why I do what I do. That’s why I am who I am.
My name is Kristi and I am a survivor.