My story begins in the Spring of 2008. I was 20 years old and a Junior in college getting my Bachelors of Science in Nursing at the University of Nebraska Medical Center in Lincoln, Nebraska. Life was everything a college student could hope for…full of friends, family, good grades, and creating lifelong memories.
One day, after a bowel movement, I noticed that my stool had a red streak in it. It wasn’t very large and you wouldn’t really notice it unless you took a good look. It sparked a thought of, “Hmm…I’ve never noticed that before,” but I decided I probably ate something red, which would have caused the unusual color. I shook it off, as if it was nothing. As a couple months passed, I continued to notice that the red streaks were becoming more and more frequent in my stools. As a nursing student, I knew this was not normal. I told my mother, who is also a nurse, about the blood streaks that I had been seeing for a few months. She comforted me in saying that it could be many things, but I should make a doctor appointment just to be sure it is nothing serious.
By this time, it was the beginning of summer. In a couple weeks, I was going to be heading to New Hampshire to spend the summer as a student nurse at camp. I made the appointment. I was nervous, simply because the appointment wasn’t for a routine checkup or common cold, but for a bleeding bottom! At the appointment, I described my symptoms and an anoscope was used to examine the first few centimeters of my rectum. I was diagnosed with anal fissures. I was told that these small cuts could have been caused by not completely chewing my food or even something as simple as riding a bike. Steroid suppositories were prescribed and I was sent on my way. I completed the round of suppositories at summer camp. The summer came to an end and I had not seen any streaks of blood in my stool since the completion of the medication. I figured that the steroids must have done their job and I was cured!
It was now Fall 2008 and I was beginning my senior year of nursing school. For a few more months, I didn’t notice any more blood in my stool and considered the problem fixed. However, then the blood streaks returned. I was living in my sorority at the time in a room with four other girls, two of which were also nursing students. There were times that I would mention the problem to them nonchalantly. Throughout the school year, the bleeding increased. My stools were more blood streaked and the blood came with every bowel movement. There were even times where there would be blood on the toilet paper I used. I showed some bowel movements to my nursing roommates and told my mother that the bleeding had returned and was even worse than before. Even though I explained to them that the doctor last spring said it was anal fissures, they demanded that I make another appointment with a different doctor. I agreed and had a gut feeling that it was something different than what I had originally been diagnosed with. I made another appointment, this time with a doctor at my university’s health center. I again explained my history of bloody stools and that I had been diagnosed a year earlier with anal fissures. Another anoscope was used to examine me. At the end of the procedure, I was diagnosed with hemorrhoids, even though she could not completely visualize any. A cream was supplied and I was sent on my way, yet again.
Time passed. Summer 2009 was spent in Cleveland, Ohio as a nursing intern in a Pediatric Intensive Care Unit. Fall 2009, my last semester of nursing school, was spent in Shanghai, China as an exchange student. I was enjoying life and even though I was still having small amounts of rectal bleeding, I ignored it. I figured I had been seen by two different doctors and both diagnoses were relatively minor, so it couldn’t be that bad. I graduated from college in December 2009 and moved to Kansas City, Missouri for a Pediatric Intensive Care nursing position. After a few months of getting settled into my new city, I began searching for a family practice physician. A friend recommended I see her physician for my yearly check-up and exam.
In August 2010, I made the appointment and my physical went very smooth. At the end of the appointment, Dr. Kimmel asked if there was anything else I was concerned about. I told her my history of bloody stool. Yet, another anoscope was completed, but nothing was seen. She said to keep an eye on the bleeding and if it gets heavier, to come back and see her.
The blood streaks and bloody toilet paper continued to increase over the next few months, so I made another appointment. I was told to begin taking a daily fiber supplement and laxative to make it easier to pass a bowel movement. I stuck to this plan for a while, but the supplement and laxative did not seem to be making an improvement. Actually, my bowel movements had gotten even worse. There were now pieces of tissue in my stool and it was rarely formed. In fact, the blood had gotten so bad that after I would have a bowel movement, the toilet water would be completely red, as if I had my menstrual period. I was very scared by this and made yet another doctor appointment, it was August 2011.
This time, Dr. Kimmel said since I had so much blood and my stool consistency had changed, she suggested I get a colonoscopy. As a 24-year-old, I was mortified! Who gets a colonoscopy at age 24? Those are for 50 year olds! I called my mom and she stated that she thought that was a little unnecessary. After all, I was only 24 years old! She suggested I go see the physician that I saw throughout my childhood, Dr. Luckey, someone who knows me really well. Two weeks later, I traveled back to Nebraska for the appointment with Dr. Luckey. He examined my bottom with, you guessed it, an anoscope! Nothing was visualized. He mentioned many possible causes of the bleeding…anal fissures, hemorrhoids, colitis, and cancer. He said it was very unlikely it was anything; in fact, he had only diagnosed one person in their 20s with colorectal cancer during his career. But just to be sure, he would do a flexible sigmoidoscopy the next week. In the meantime, I was to use a cream he prescribed because he suspected colitis. As a nurse, I knew there was a possibility that the bleeding could be from a tumor. However, I was so young, so I thought it was very unlikely. I simply just wanted an answer to why I was bleeding.
On Friday, October 7, 2011, I received an enema to clear the lower part of the bowel of stool and received the flexible sigmoidoscopy. After the procedure, I could tell something was wrong by Dr. Luckey’s demeanor. A growth 5cm wide that took up half the width of my colon was found. Three biopsies were taken, but we wouldn’t know the results for a couple days. He suggested I schedule a colonoscopy as soon as possible. I went on throughout the weekend with a pit in my stomach. I knew it was cancer. How could it not be? I had been bleeding for so long!
On Monday, October 10, 2011, I was getting ready to work a night shift. At 6:15pm Dr. Luckey called and said the biopsies showed adenocarcinoma. I have little recollection of what all was said during that phone call. All I knew was I had cancer. That night my mind was running a million miles a minute. I cried. I paced. What is the treatment for this? Will treatment work? What’s the survival rate? I had so many questions and all I wanted was instant answers of what I needed to do to get the growing tumor out of my body.
The next day my mom and step-dad drove down to Kansas City from Nebraska. The next two weeks were a whirlwind of appointments, consults, and referrals. I had a colonoscopy that showed a tumor in my sigmoid, but luckily nothing else. I met with my radiation oncologist, Dr. Coster, my medical oncologist, Dr. Hinton, and my geneticist, Dr. Geier. He would be testing me for Lynch Syndrome. I also met with my surgeon, Dr. Graham. At this appointment, he examined me and measured the tumor at 9cm from my anus, which classified it as rectal cancer. I also had a CT scan. The scan showed a few enlarged lymph nodes with no other metastases, so I was diagnosed with Stage III Rectal Cancer.
Before a treatment plan could begin, two things needed to happen. I needed to have a port-o-cath placed and I needed to decide what plan I wanted to follow to preserve my fertility. I met with a fertility specialist who thought the best option would be to completely remove my ovaries and freeze them…mind you, successful reimplantation only had occurred 17 times in the world! I was devastated. I thought even if I do beat this cancer, there was no way I was going to be able to have kids someday. My radiation oncologist, however, told me that that procedure was unnecessary. They could simply snip my ovaries at the fallopian tubes and attach them to my oblique muscles so they would not receive any radiation. There was another surprise though. The CT scan that I had a few days earlier showed a large mass that looked like a teratoma, a benign growth, on my left ovary. A gynecological surgeon, Dr. Chapman, was notified and she luckily, squeezed me in to her busy schedule so that my surgery could be completed.
The weekend before my ovary surgery, my boyfriend Shawn and I went to Minnesota to watch the Huskers take on the Gophers. We were meeting many of our friends there. I decided not to tell anyone about what the last two weeks had entailed and tried to enjoy the weekend as if nothing was wrong. We stayed with Shawn’s Aunt Carla and Uncle John. Ironically, two years earlier, Carla had been diagnosed with colorectal cancer, as well. She had completed treatment and was living cancer free. Carla gave me hope and would be one of my biggest mentors in the months to come.
After the weekend in Minnesota, it was time to head back to real life in KC and begin my battle to destroy my cancer. On October 24, 2011, I had my port-o-cath placed. The next day, I had my ovaries laparoscopically attached to my oblique muscles. During this procedure, they also removed the teratoma that was on my left ovary. In doing this, blood flow was cut off to my left fallopian tube and it was not able to be recovered. Although the surgery was outpatient, I was in terrible pain and my stomach was so swollen. Despite all the negatives, that weekend I traveled to Lincoln, Nebraska to yet again watch another Husker victory.
That next Monday, October 31, I received my very first drop of chemo, 5-FU, through a pump. I was to keep the pump continuously for 35 days. The first couple weeks were relatively easy, except for the occasional forgetfulness of “pumpy,” which would end up with him dragging behind me as I was walking! Then the diarrhea and mouth sores set in. In fact, they got so bad, I was taken off the pump for a week because the sores were beginning to work their way down my throat. I was disappointed that the pump had to be removed because I wanted to receive the most chemo possible to fight my cancer. I also didn’t want to seem weak. After the sores healed, I had the pump for one more week to equal 35 days. During this time, I was also going to radiation therapy five days a week. I handled radiation very well, but the red, burning, skin breakdown definitely made a strong appearance. After completion of both therapies, I had a six week break before my surgery. The break allowed me to enjoy my friends and family without being sick, which was such a blessing.
On January 25, 2012, the tumor and surrounding lymph nodes were removed from me by Dr. Graham. I woke up from surgery with an ileostomy. I was OK with this because I was told it would only be temporary. The biopsy report came back a few days after the procedure. The good news was that the tumor had shrunk to the size of a pencil eraser. The bad news was that nine out of thirteen lymph nodes were mucinous, which suggested that cancer cells were once present. I knew that the doctors suspected lymph node involvement, but nine lymph nodes?!? As a nurse, I understood that lymph node involvement means more likelihood of reoccurrence. However, my medical oncologist assured me that he would be very aggressive with treatment following surgery.
After being released from the hospital, I had 4 weeks to recover before starting 12 rounds of FOLFOX (5-FU, oxaliplatin, leucovorin). During this time, I learned that my genetic testing showed that I was negative for Lynch Syndrome. The rounds of chemo seemed to be never ending. I would receive a treatment every other week. I experienced many different side effects including nausea, vomiting, neuropathy, muscle cramping, hand and foot syndrome, and joint stiffness, just to mention a few. It was as though every treatment brought about a different side effect or experience. During this time, I was also receiving Lupron shots to preserve my fertility. The shots put me in a fake menopause and the hot flashes were miserable! I also had difficulty keeping my neutrophil and platelet counts up, which delayed treatments. The first treatment that was delayed, broke me. Six months of chemotherapy was enough. Now that six months was going to be even longer. Four out of the twelve chemotherapy treatments were delayed.
Dr. Hinton continually reminded me that he was being very aggressive with my treatment. There were even times that he wished to decrease my dose due to possible lifelong side effects. I begged and begged him not to reduce my doses. My greatest argument was that I needed to have a life to have lifelong side effects. If he reduced my dose, he could possibly be reducing my chance of survival! Despite all the treatment setbacks, emotions, and physical ailments, I always reminded myself that I needed to take it one treatment at a time, one day at a time, or even one hour at a time and eventually chemotherapy would come to an end.
I am so incredibly lucky that I had friends and family with me through every step of the way. I never was alone during any treatments or doctor appointments. My mom and dad came down for most of my treatments. My step-dad would send me frequent “Charlie Says” texts to brighten my day (Charlie is the family Basset Hound). My brother’s sports teams would tie blue ribbons to their shoes and jerseys to show support. Friends would take me to morning appointments even after just working a night shift. Other friends would bring me meals. I would receive cards from people I had never met letting me know that I was in their prayers. I would receive care packages from distant friends and family. A friend’s 2nd grade class would make me cards reminding me that everything would be okay. Everyone I knew wore Battle Mode bracelets with my name on them for a continual reminder of my fight. My church would pray for me during many services. My younger brother’s classmates and teachers wore blue for me during National Wear Blue Day. The power of a positive attitude, frequent prayer, and a strong support system in addition to my aggressive treatment was the exact “cocktail” I needed to conquer cancer.
On August 28, 2012, I received my last drop of chemotherapy. On September 26, I had a CT scan that showed no evidence of disease. When I was going through treatments, all I wanted to hear were those words, “you are cancer free”. Although finishing treatments was so relieving and I looked forward to days of normalcy, it also brought up new concerns. What if something comes back? I don’t want to go through chemo again. I just felt a pain in my shin. Does that mean my cancer spread to my bones? I don’t think the worrying will ever completely go away. But I have learned you can’t live your life in fear. I know for right now I am healthy so I am going to take advantage of it. I had my ileostomy reversed November 7, 2012. Since then I have been enjoying life and focusing on me. I have been enjoying attending my brothers sporting events, going on dates with my boyfriend, spending time with my girlfriends, and getting back to taking dance classes. I finished my first year of graduate school with a 3.8GPA. I went back to work in the PICU in January 2013. I am looking forward to getting back to a normal day to day schedule, keeping busy, and most of all just enjoying LIFE.
My story shows how important it is to be an advocate of your own health. From the first day, I spotted blood in my stool, I knew it wasn’t normal. Even though I had seen many different doctors, my problem continued to reoccur. Seeking opinions of different doctors is what saved my life. After being diagnosed and going through treatments for a cancer that is normally not even screened for until age 50, I believe that if I would have received a colonoscopy the first time I spotted blood, the cancer would have been a polyp or at a very early stage. Colon cancer is affecting people under 50 more and more frequently every year. If a person is 50 or older, screening is a must. If a person is under 50 and is having changes “down there” or has a family history of colon cancer, screening is a must. Colorectal cancer is preventable, treatable, and beatable, but it is necessary for a person to be proactive in his or her health for this to happen.