Well where do I begin…
My name is Kari-Lynn Cermak and 23 years ago my dad had a colonoscopy due to symptoms his doctor was concerned with. That’s when my family’s life was changed. I just turned 4, my dad was still in his 30’s and we got the new my dad “has cancer”. Those words no one forgets hearing, being diagnosed with CANCER. Well it wasn’t just any Cancer it was Familial Adenomatous Polyposis. At the time my dad knew he lost his mother at 5 from cancer (she was in her 20’s) but didn’t know what type. After talking with his father he learned it was Familial Adenomatous Polyposis. That’s when my parents’ worry grew, not only did they know my dad had cancer from the disease his mom died from, but I had a 50 percent chance of having the same disease. I was their only child, their miracle. They were married 14 years before they had me and doctors were amazed my mom had me as they didn’t think she would ever have a successful pregnancy, but I was born, a healthy 10 pounds, 1 ounce, one month overdue baby girl.
My dad had to have multiple surgeries and came close to death many times, but in the end he survived his fight with cancer and he now has a permanent Ostomy.
Doctors told my parents that I had 50 percent chance of having the disease, but they would not test me until I was closer to 20. Well, that was not good enough for them and their battle begun. They wanted to be proactive and know if I had the disease or not. They were told that if I were tested even if I had the disease that I was too young for doctors to see the disease with the scope. They said they never tested a 4 year old before for the disease. Eventually my parents found a doctor at a local Children’s Hospital and a team who were willing to test me. And all the stories about me being too young to see the disease were made false as at 4 years old I was diagnosed with Familial Adenomatous Polyposis. I still remember every doctors appointment before being diagnosed and after. I remember my parents telling me that my tummy was like my dads and one day when I was older I would need surgery like him. My parents always told me the truth.
Every year I would get a colonoscopy and many other tests to see if the disease was spreading or growing. Then one fall day, at 9 years old I went for a scope. I clearly remember going to the hospital to meet my doctor for the results with my parents and my grandmother (on my moms side). The morning of the doctors appointment I remember my parents talking more to me about the possibility of surgery. I remember going to the doctors a little more concerned than before. I needed surgery and not a surgery like my friends were getting at my age for their ears or tonsils, I was getting an organ taken out.
A few weeks later I met with a man who as an adult I admire, Dr. Blair. He was a tall man who anyone I knew had no choice but to look up to but he was so soft and gentle. He got to my height and drew pictures of what he was going to do in the surgery. he made surgery not scary and I remembered being a little scared but excited that he was going to fix me. My parents had concerns because my dad had complications from his surgery that almost killed him and that maybe I would have cancer. Dr. Blair told me he would have the intestine tested for cancer and then if everything was clear I would be fixed.
A few months later, my mom and grandma picked me up after school. I knew something was different because my teacher asked me to stay after class. I was a good student who never had to stay after school. But then I remember him giving me a hug and seeing my mom’s sad looking face and I was told that in the morning I would be on my way for surgery. I was sad, scared of the unknown but I knew I needed this to help me.
At the hospital the staff were amazing. I was told everything they were going to do to me. The day prior to surgery I was took down to a treatment room where 2 nurses explained to me that they were going to put a tube “down my nose and in to my tummy”. I didn’t realize how awful that was, I cried, I gagged and then it was over. It was not the best feeling in the world but it was one step closer to being fixed. That night the nurses let me help them pull the tube out as they wanted me to sleep better without the tube in my nose. Before I went to bed my doctor (Dr. Blair) came in to say good night. He and an ET nurse drew on my tummy where my main scar would go and where my ostomy could go (2 different spots). Dr. Blair drew on a white board what he was going to do inside me (he erased my large intestine, drew in a j-pouch and an ostomy).
The next morning I was awoken very early to take a bunch of pre op medications. I drank a med that burned my throat but knew it was so I wouldn’t look like a balloon after surgery (my vision at 4 when I was told it was to stop swelling). My amazing doctor came in to say good morning and to answer any question I or my family had. My parents slept at the hospital so they were with me and i was taken with them downstairs to the good bye doors. The doors that changed my life, not for the worse but for the better. I remember my parents and I crying as I was scared. The doctors let my parents in until I feel asleep.
While I was under I had no idea that my surgery was taking way longer than it should have and that they ran into complications. My intestine was too short for a colostomy. Dr. Blair and his team had to turn a 3 step surgery into 1. Eventually I woke up during the surgery but the staff were calming and told me I would go back to sleep with some more medication (I was told this could happen as my dad did the same for all of his surgeries).
A few hours later I woke up on the table to a nurse trying very hard to put a hospital gown on me. I refused. It was a blue hospital gown and it was not pretty (my grandma bought me pretty night gowns and i had them all in my room upstairs). I refused and Dr. Blair came over to me and wrapped me with tons of hot blankets. He said I didn’t need any hospital gown if i didn’t want and that I was going to go see my parents in the recovery room. At that time I remember him telling me that he could not give me a ostomy and that i was hooked up normal just like my dad. I remember a bit in the recovery room (my parents and a nurse who I always has after my scopes was there and she always called me sunshine). Eventually I was wheeled up to my room.
My stomach was left open for 7 days in case they needed to go in again as they do not normally do a 7 step procedure and it would help reduce complications. The best part about the surgery besides getting better was that Dr. Blair allowed me to see inside my stomach when it was open during a dressing change. That amazed me. He showed me the different layers and everything. I think that is what made me fall in love with medicine. The worse was every 20 min being moved and the needles. From my hips to my knees and my shoulder to my elbow I was bruised on both sides from needles. My parents never left my side 24 hours a day (My mom only went home 1 night out of my entire stay)
I was standing for the doctors after surgery. I remember forcing Dr. Blair to let me go pee and he gave in. The nurse brought me a bed pan and I told them I wanted to walk. Dr. Blair was on my side and he allowed me with a ton of help to go to the washroom. I needed lots of help. I had 3 IV poles, a wheelchair (in case I changed my mind) a bottle thing for my nose tube to empty into and a couple people to hold onto me as I was still drugged. I walked to the bathroom and back and peed. From that point on there was no stopping me! I walked so much that my parents and medical staff had to force me to rest. I I was originally told that I would be in hospital at least a month. Dr. Blair told my parents if I was home at one month post op it would be a miracle. I went home before the one month.
I didn’t want the mushy baby food so I was bumped to soft food and then to a regular diet before they thought I was have originally. I was bored of home school and finished all my school work a month a head so the doctors gave me permission to finish the school year that June even though I still had a dressing. (They did not plan on me returning before November/December the following school year). I wanted to swim in the pool in my yard (my scar hadn’t fully healed and so Dr. Blair and his team figured out a way I could swim. They got me these large sticky cover that would go over a dressing so I could swim in my pool. The best advice I was told was from my parents, “You are fixed, and you can do whatever you feel you can”. In school I played on sports teams, and did anything any other child normally does.
Now I am turning 27 this year (In spring it will be 18 years since my surgery). Every 6 months to a year, I go for regular scopes and checkups to make sure I am cancer free and every year I am perfect. Yes I go to the washroom more than anyone else, I know and I cannot eat all the nuts and popcorn I wish I could, I have scars (that I am proud of) and, I AM ALIVE AND HEALTHY! As Dr. Blair told me after my surgery that “my J-Pouch was textbook perfect” and he wished he took his camera into the OR to take a picture of it. I have never been in hospital since my surgery (outside of 2 obstructions in my teens). I do everything I dream of and never give up. I never use my J-Pouch or surgery as a reason to stop me. I know I have a risk of colon cancer but why not live my life to the fullest. My dad and I are both lucky to be alive because of a simple scope that many people are too scared to do or scared of the unknown or embarrassed to share their symptoms with a doctor. I wish everyone could be tested and treated as I was as I believe that is why my story is such a success.
I participate in Relay for Life for Cancer every year and remember all my family and friends who lost the fight but I celebrate that night for my parents. technology and doctors who let me be tested and my Dad, my survivor! All this changed my life not for the worse but for the best. I believe it made me closer to my parents and showed me how much life is a gift. I tell adults who are scared to be tested that if any baby can be scoped than they are strong enough too as well. Get checked as it can save your life!
Thank you for listening,
Kari-Lynn Cermak