Allison Rosen: Always an advocate

Contributed by Allison Rosen

When you’re in your thirties and loving life, cancer is the last thing on your mind. I had health issues my whole life, from asthma to Crohn’s, but I never thought cancer was a possibility for me, especially at this age. Still, I was having colonoscopies every year or so as routine maintenance for my Crohn’s disease.

I had put off my scope in 2012 because I was too busy with weddings, traveling, and life. One night, after dinner with friends, I felt like my food was stuck inside me. My bowel habits had also become noticeably different over the last few weeks. But I chalked it up to the food I had been eating or possibly a stomach bug, which had been prevalent in my community.  

Finally, when it was obvious to me that something wasn’t right, I reached out to my gastroenterologist, who ordered an X-ray. Initially, she had me drink something to help move what they thought was a blockage out of my colon.

After a few days of minor relief, the same feeling of food being stuck inside me reappeared and my bowel habits, which I was all too familiar with, were just not right. I went back to the doctor, and we decided it was time to schedule a colonoscopy, since it has been a year a half since my last one.

When I awoke from the procedure, my mom told me what my doctor had said. “There is something weird growing inside her colon and it’s blocking the path.” The doctor had done biopsies, and she didn’t think it was cancer, but she had no idea what it was.

Wait, I thought, did my mom just use the word “CANCER”?

My mind started spinning. Why would my doctor say that word if she didn’t think there might be a chance of cancer? I was freaked out, but what happened next was out of my control, and I had to forget what I had just been told and get back to work and my busy life, until a few days later when I got “the call” from my doctor.

She asked me to come to her office, as she wanted to review my biopsy results in person. She had never done this before, and at that very moment, before I even had a chance to get there, I had a feeling in my gut that it was something bad. I called my mom, and I couldn’t stop crying as I walked across the street from my job to my doctor’s office. That five minutes it took to walk to her office seemed like an eternity. My mom calmed me down, but we both really knew that our lives were about to change.

On June 7, 2012, I was diagnosed with colorectal cancer. My life as I knew it was changed forever. The irony of it all was that I worked in cancer research and had been doing so for seven years. I was all too familiar with what people go through when fighting cancer. Being so young and naive, I was confused about how this could happen to me, I only knew older people who had colorectal cancer, I didn’t think young people were at risk. Through the tears and whirlwind of emotions of the next few days, I was determined to fight and beat the disease. I had a lot of life left to live!

With the support of my family, friends, and work, I faced the biggest obstacle I had ever encountered in my life. I knew it wouldn’t be easy, but I was determined. I knew a little about colorectal cancer, including that chemotherapy, surgery, and radiation were all in my future. Working in the medical center at Baylor College of Medicine and having MD Anderson Cancer Center right cross the street from my job, I knew I was surrounded by the best possible doctors to help me through my journey.

The years that followed were truly a test in perseverance and emotional strength. They tested my mind, body, and soul in ways I never knew possible. My original surgery after 5½ weeks of chemotherapy and radiation gave me a J-pouch. This was my wish, as to avoid having a permanent colostomy. A year after the surgery, however, I went to the emergency room to see my regular gastrointestinal doctor, not my cancer doctors, for unexplained abdominal pain. In the emergency room, unbeknownst to anyone, my J-pouch was accidentally punctured during a colonoscopy. I was let go from the hospital, but I still felt like something wasn’t right. If I had not reached out to my doctors at MD Anderson after that, I might have died.

The doctors there had me come in for an exam once I explained my symptoms. My white blood count was through the roof, and it was then and there that doctors told me the devastating news about what had happened to my J-pouch—the puncture and subsequent formation of a large abscess in my abdomen. This resulted in emergency surgery to give me a temporary ileostomy and a lot of crying. I cannot explain how I felt after this, as it was all a blur, but I knew that I was alive, and that was all that mattered to me—bag or no bag!

After two years with the “temporary” ileostomy, and after several long discussions with my surgeon, I made the hardest decision I’ve ever had to make: to make my illeostomy permanent and go under the knife again to remove my failed J-pouch, clean up adhesions, and excise all residual rectal tissue. This was a complex, major surgical intervention involving multiple specialists. This was in December of 2016. Today, I am back to work and regular life again, with a little extra baggage, my permanent ileostomy.

I can now say, six years after my initial surgery, that I am cancer free and living life to the fullest. The biggest thing I kept telling myself was to stay positive and that I could conquer anything. Along the way I lost friends who were not there for me, sometimes didn’t know how I would survive the week, and dealt with fertility and body image issues. But with my doctors and amazing support system I got through it all, I can proudly call myself a survivor. I still struggle daily with side effects related to my cancer, but those seem very small compared to what I have already dealt with. Anyone that knows me knows that cancer has not stopped me from doing anything. If anything it has motivated me to do more!

Along the way, my passion for work changed. While I still work for Baylor College of Medicine, I now work in the Dan L Duncan Comprehensive Cancer Center in the Office of Outreach and Health Disparities. I spend every day working to educate others on the importance of being screened for various cancers, and I can say first-hand that a colonoscopy saved my life. We reach the people that are sometimes forgotten, the minorities that are most affected by certain cancers, the homeless, and those over 50 that have never been told about screenings. My passion is real and raw, and this helps me motivate and fuel the providers we educate about the importance of colorectal cancer screening.  

Besides my day job, I also volunteer on a regular basis with many groups to help educate other young adults about colorectal cancer and the importance of knowing your body and paying close attention to any symptoms that might indicate an underlying cancer. I tell my story to anyone that will listen in an effort to open eyes to the fact that cancer can happen to young adults when they least expect it. Helping others has helped me heal from all I have gone through over the years. I like to think I am a force in the young-onset colorectal cancer world, being active in the Colorectal Cancer Alliance’s Never Too Young Advisory Board, the event director for the Get Your Rear in Gear 5K here in Houston for the Colon Cancer Coalition, and active with Fight CRC. Locally, I helped to start a young adult support group at MD Anderson, I serve on the Young Adult Advisory Council and Patient Family Advisory Council, am a part of the Ostomy support team, and serve as a steering committee member for the myCancerConnection program at MD Anderson that provides one-on-one support to anyone in need, as well as so many other amazing programs that I cannot list them all here.  

Through all my volunteer work and my new job, I hope to help get the screening rate for young adults changed and to educate physicians on what to look for when someone young comes to see them with abnormal symptoms. I do not ever want someone under 50 to be ignored. We can all develop colorectal cancer, no matter our sex, ethnicity, and age!