Wednesday, May 01, 2013
This year I will be celebrating 10 years Colorectal Cancer free. So to celebrate and give back to the community, I'm participating in the 2013 Rochester Get Your Rear In Gear 5K Run. Since I had my story typed up I thought I might as well share it with my sparkfriends. This is my first blog so I might as well share it all!
This is my story...Before I was finally diagnosed with cancer I had been going to the doctor frequently with different GI issues. I had been told it was irritable bowel syndrome, lactose intolerance and tried different medications and diets with little or no changes over the years. At the time when things were at its worst I was planning my wedding, finally my doctor had agreed to have me see a Gastroenterologist who performed a colonoscopy. Just 2 1/2 weeks before my wedding and at age 26, I was diagnosed with colorectal cancer. My GI doctor told me to cancel my wedding and have surgery. My doctor had made me an appointment to go meet with a surgeon immediately. I found out I had a large tumor in my colon and in my rectum which were almost completely blocking my intestinal track and a colon filled with thousands of polyps. The surgeon told me that I did not have to cancel my wedding. If I "ate" a liquid diet until my surgery I should be ok. Luckily I had found the best guy in the world to marry. My now husband Jeff was a rock through this whole situation. He still wanted us to get married and for me to have the wedding of my dreams. He didn't care that I was going to have my entire colon and rectum removed and that I would have a permanent ileostomy for the rest of my life. So we got married on July 5, 2003 and I was scheduled for surgery on July 7th. The wedding was perfect, we danced until I had blisters on every one of my toes and I followed doctors orders and had a piece of cake and a glass of champagne on my wedding day. Luckily my dress had straps because I had lost so much weight being on a liquid diet that my dress just hung on me by my straps. Surgery went well and I spent about a week in the hospital (though I wouldn't recommend a hospital as a honeymoon destination). Family and friends decorated my room with tons of beautiful photos from our wedding day.
After I was healed I began chemotherapy treatments and after a few months of chemo I than began radiation treatment. Before I could have radiation treatments my doctors decided it would be best for me to have surgery to reposition my ovaries, so they would not be destroyed by radiation. I finished my radiation treatments right before thanksgiving, but a few weeks later I would end up in the hospital. Radiation treatments had caused sores on bottom that hurt so bad I could no longer use the bathroom with out screaming. While treating the pain I had an IV site get infected and caused my hand to swell up to twice its normal size. The antibiotics they gave me caused my kidneys to shut down and after three long weeks I was finally discharged from the hospital on Christmas day. Also not how I would recommend spending your first Christmas as a married couple. My Mom did bring a crock pot full of food and we did have a great meal on Christmas Eve in the hospital. After that incident I finished my last couple months of chemo treatments and finally finished on Friday, February 13, 2004. I figured Friday the 13th was going to be have a lucky day for me.
I spent the next 5 years going to see my Oncologist every 3 months for CT scans and blood test. I had a scare in 2006 when a CT scan showed a mass in my abdomen. I had surgery and had the tumor removed and it turned out to be what is called a Desmoid tumor. It is a not a cancerous tumor but it will spread through out your abdomen and destroy other organs over time. I now take a medication which is can help prevent or slow the growth of these tumors. After the 5 year mark my doctor slowly increased the time between CT scans and office visits. I now am going to the doctor every year and having CT scans ever 2 years. I have been in and out of the hospital numerous times over the years. I have problems with scar tissue growing around my small intestines and causing bowel obstructions. Sometimes things will resolve on there own but other times I have had to have surgery to release the scar tissue. It ends up being a viscous cycle because the more surgery I have the more scar tissue grows and around and around we go. My last surgery was in August 2012, It had been over 3 years since my last hospital visit/surgery which had been my longest stretch.
After I finished my treatments my doctors had me meet with a Geneticist. Since I had colon cancer at such a young age with thousands of polyps and also having had thyroid cancer years earlier they believe I have a condition know as familial adenomatous polyposis (FAP). I have been through all of the current testing that is available to determine if I have the genetic mutation that causes this condition, but everything has come back negative. My doctors believe that I have a mutation they currently don't have the testing to prove it. So I am treated as if I do have it with yearly endoscopies to remove the polyps that continue to grow in my stomach and small intestines. My doctors had also advised me to not have children of my own because I have a 50% chance of passing it on to my children. Also with repositioning my ovaries and all of the surgeries and complications my doctors did not think getting pregnant and going through pregnancy would be easy for me. So we decided to adopt. My beautiful daughter was born in June 2009 and thanks to her wonderful birth parents we were given the best gift of all. She has been worth every minute of this whole ordeal. I have learned that it stinks to be in the hospital but not as bad as being a parent and being sick in the hospital. My geneticist also referred me to a drug study being done by the University of Utah. It is a study for people with FAP and the medication is supposed to help prevent the growth of polyps in the small intestine. I was very excited when they accepted me, hopefully this medication will help not only me but many others who suffer with this crazy condition. In true fashion I did suffer from some severe side effects to the medications, but after taking a couple weeks off and having the dose lowered I am doing much better.
I am excited to walk/run with my family and friends who have been so supportive through this whole journey. This is as much for them as it is for me. I have learned as a parent it is harder to watch your child be ill and feeling so helpless. I will tell you it is much easier to fight then it is to watch others go through the battle. I thank God daily for the most wonderful supportive parents, sister and husband a person could ask for. They all have taken turns to sleep on a crappy cot in a hospital room so I wouldn't have to be alone. It was not an easy journey and there were days I did not want to continue on. My family and friends have been by my side cheering me on and making me laugh when I needed it most. They made this crazy journey as fun and enjoyable as possible. They never left my side and carried me when I needed it most.
Almost three years ago I was fortunate enough to be able transfer to radiation department in the hospital I work. I get to meet these courageous people everyday and it keeps me very grateful that God has kept me cancer free for 10 years. I also know how quickly things can all change. So this is why I am running. I wanted to celebrate my 10th anniversary and was so thrilled to find a cause that directly helps colon cancer. I am also happy that it is something that I can do with my family and friends too.