"I’m going to lose my hair?!?!" Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer?
So there I was, barely eighteen years of age checking in at Johns Hopkins University Hospital for my colonoscopy. I had just walked the stage no more than a month ago to receive my high school diploma, now I’m lying on my side as nurses prepped me for my colonoscopy.
I don’t remember being nervous as my grandparents and I waited for the results, as the whole experience felt surreal; I mean, here I am waiting on the results of a colonoscopy at an hour no teenager should be awake, while all my friends were laying peacefully in their beds sleeping off a summer’s night of being a "normal" teenager, but I digress. It seemed like a lifetime before we received the results and as fate would have it, not only did I have polyps, but so many in fact that my colon was deemed unsalvageable, and in turn I would need a total colectomy. Little time was wasted as my surgery was scheduled for September 4th, 1996 at the Mayo Clinic in Rochester, Minnesota, by one Dr. Roger Dozois. The same surgeon who performed my uncle’s colectomy years earlier.
The summer flew by as they usually do, and the next thing I know I’m on a plane with my grandparents and uncle flying from my hometown of Washington, D.C to Rochester, Minnesota. We arrived two days prior to my surgery so I would be able to meet my surgeon, get marked for my temporary ileostomy as well as complete all the necessary paper work. Other than getting marked for my temporary ileostomy those two days prior to surgery were a blur, all I really remember is the night before surgery. After I was checked into my room the "real" preparation began. I was fed pills the size of quarters, while given enema after enema to clean out my system. Most of the night was spent in the bathroom, as my nurse was very liberal with the dispensing of the enemas, and if I wasn’t on the toilet having my life sucked out of me, I was vomiting up the lining of my digestive tract. After hours of being fed pills that could choke a horse and given enough enemas to clean out a cow, I was finally able to get some sleep before my big day.
The morning came with a knock at the door, and a nurse who greeted me with a valium to "relax" me before surgery. Moments later I was on a gurney destined for a surgery that I wasn’t prepared for. More than nervous and hardly "relaxed" my heart rate increased with each wheel rotation of the gurney which was scheduled for a nonstop trip to the O.R. I had reached my final destination; it was white, bright, cold and unfamiliar. I was moved from my gurney to the operating table, and by this time I was all strapped in, having an oxygen mask placed over my nose and mouth. "We’re going to take real good care of you Kristofer." said the anesthesiologist, "now take a few deep breaths for me and count back from one-hundred." "One hundred”….and that’s all she wrote.
When I came to, I woke to a packed hospital room, with my grandparents to the right of me, and my surgeon at the foot of my bed. My surgeon wasn’t alone, he was flanked with an entourage of white coats. I was confused enough without all these unknowns standing in my room, but before I had time to question my surgeon walked to the side of my bed. "Kris, we found a tumor in your rectum during the surgery." Wait! What? My mind was racing, trying to grasp the situation, and that’s when my vanity came into play. "Gramps, I’m going to lose all my hair?!?!" So after finding out I had cancer, my biggest concern was my hair, talk about priorities. Being the most caring, compassionate, empathetic and understanding man I have ever known I shouldn’t have been surprised by his response, "Kris, don’t worry, we’ll get you the best wig money can buy." Now take a moment to realize the magnitude of my grandfather’s response. My grandfather just found out that I had cancer, and in a matter of moments he was able to process the severity of my situation, listen to my ridiculous concern, and without missing a beat console me with what I needed to hear. Ridiculous or not, it was nothing short of amazing.
My surgeon informed me that I had stage III colorectal cancer, and with that I was given a forty percent survival rate. Math was never my best subject, but it was easy enough to figure out that the odds weren’t in my favor......I was only eighteen! With the very next breath my surgeon leaned down next to me and said, "Kris, this is game seven, I need you to fight." I was at a total loss, I didn’t know what to say, what to do, or how to feel, I was just so confused, so I did what I do best, pretend. I pretended that I was okay, and that my illness wasn’t that serious. My psyche was just too fragile to handle the reality of the situation.
After several months of being home finishing up my treatment, it was time for me to go back to the Mayo Clinic for follow up testing. It would be a two day trip for my grandparents and l. The first day was spent being poked, prodded, scanned and stuck, nothing short of the usual, with instructions to follow up the next day. With my grandparents by my side, I sat silently staring at the floor waiting for the doctor to send me home with a clean bill of health. My head shot up as I heard a knock at the door and in walked the doctor with my results. "Kris, the CT showed spots on your liver, and I would like to do a biopsy first thing in the morning." Confused, I looked at him and said, "Doc, I can’t, our flight leaves in the morning," then shot out of my seat found an empty room down the hall and proceeded to cry every single tear I had. Eventually I wiped the tears from my face, gathered myself the best I could and made my way back to the doctor’s office. Once back in the room I pleaded with my grandparents as well as the doctor to let me go home as planned and have the biopsy done then. I was scared, I wanted out and home was my only salvation.
Once I was home there was a window of a few days before I was able to see my oncologist, and during that time I felt nothing. I couldn’t laugh, couldn’t cry and I couldn’t feel. I was completely numb, just a dead man walking. Nothing would’ve prepared me for what I would find out the day of my appointment. When my oncologist took my grandparents and I back to his office, he pulled up my scan. “Those spots you see are quite normal, that’s just how the liver reads when scanned.” I didn’t know what to say. I was relieved, yet angry, I just spent the last few days walking around like a zombie, waiting on what was sure to be my imminent death. I left my oncologist’s office shaking my head, it’s not like I learned about the severity of these “so-called spots,” by some “quack” operating out of his garage! This was the Mayo Clinic, "thee" place to go for cancer treatment. To this day I’m still shaking my head.
"Just when I thought I was out, they pull me back in." It was once again time to go back to the Mayo Clinic for another follow up visit, and wouldn’t you know it, my CT results didn’t come back clean. I was told that I had a mass of what looks to be a tumor wrapped around my left ureter, which I was a little hesitant to believe considering the outcome of my last visit. Unfortunately for me there were no mistakes being made this time. I was shook to my core. I didn’t know if I was coming or going, or when, if ever this rollercoaster ride would end. The results came back from the biopsy, and thankfully the tumor was benign, but I wouldn’t get off that easy. While benign, it still was a tumor, a desmoid tumor, which were common in patients with F.A.P. Due to the location I was told the desmoid was inoperable From there I was put on a trial medication which had some success shrinking desmoid tumors, along with a referral to a urologist, as the tumor was causing me bladder and kidney pain. Upon meeting with the urologist, the doctor explained I would need to have a stent placed which would keep the kidney dilated. After a few years of urine tests, stent placements and replacements, my kidney showed it was able to function without the stent. Oh, and the desmoid tumor? My last MRI showed no evidence of any mass around my ureter.
Fast forward to the fall of ’97, I was home recovering from my j-pouch surgery, I was feeling better, looking better and best of all living without an ileostomy, but I was about to receive the best news yet. While out running errands one day my phone rang and it was my grandfather. "Kris, I just got off the phone with your doctor, and all of your latest tests have come back clean, you have no cancer in your body." I stopped what I was doing and screamed “YES!” at the top of my lungs! I was one year cancer free, and fully understood the significance of that marker.
One year turned into two, then five and here I sit today, almost twenty years later, free of cancer and lucky to be able to call myself a survivor. With all that being said, It would be remiss of me if I said that’s where my cancer story ended.
The effects of cancer and its treatment will be with me for life as I still live with bladder and kidney pain due to what my urologist calls "radiation cystitis." Also a few years after my j-pouch surgery I developed anal stenosis due to the radiation treatment. I was dilated a few times under anesthesia, and even had a surgery to try and rectify the situation, (no pun intended) but to no avail. The surgery left me not being able to control my bowels, and having to wear a pad during the day and diaper at night. I let the aftermath of cancer treatment rule my life, living this way for ten years. I was painting myself into a corner. My shame and disdain for the life I was leading grew larger with each passing day, something had to change. On August 5, 2013 I decided to have surgery to receive a permanent ileostomy, and not only is it not nearly as bad as I remembered, my ostomy has given me my life back. Chalk my new found acceptance up to age, maturity or simply just knowing things could always be worse.
Cancer did a number on both my mind and body, but through it all I am still here. I’ve said it before, and I’ll say it again, it’s not our afflictions that define us, but how we choose to deal with them.
