Colorectal cancer was not something I had ever really thought about or even knew much about until March, 2015 when I was diagnosed with rectal cancer. I was 29-years-old, and the tumor was found on a not so routine colonoscopy. I had been having irritable bowel symptoms for years and was on medication with little benefit. I started having intermittent rectal bleeding but I figured it just hemorrhoids and was too embarrassed to mention it to my physician at first. When my symptoms started to deteriorate to the point that I was having constant abdominal pain, no appetite, and increased bleeding I was scheduled for the colonoscopy. Even then no one expected to find cancer.
Everything happened so fast the week I was diagnosed. I had the colonoscopy at the beginning of the week, and by mid-week the pathology results from the tumor were back showing that it was definitely cancer. By the end of that week I was seeing a colorectal surgeon and then had appointments with a radiation oncologist and an oncologist. My head was spinning with little time to process what was going on. How do you process the fact that one minute you are preparing for your last semester of nursing school, working, making plans, and enjoying life and the next you have cancer that will require chemotherapy, radiation, surgery, and the treatments will probably throw you into menopause and leave you unable to have children?
Even if I couldn’t find peace amongst the chaos I decided early on that I was going to be strong, that I knew I could beat the cancer, and that I was going to put on a brave face and a smile while I beat the cancer even if I felt like crap while doing it. I was not going to let the cancer own me. Was everyday a challenge? Yes! Was I fortunate that I had a good support system and that my life could have been worse? Yes! My parents and my family were my support. Cancer might have taken host in my body but its effect impacted my whole family. They poured so much time and energy into my recovery.
There were countless days when I was too sick and fatigued to drive that my father would drive me to my radiation appointments in the morning and then back home so I could sleep for a few hours before having to go to work. There were countless appointments for radiation, chemo infusions, port flushes, lab work, CT scans etc. and my parents were with me through it all. The support and encouragement from family, friends, and church family was amazing.
I underwent the pre-operative radiation and continuous chemotherapy, toting around my fashionable chemo fanny pack for six weeks, and then came time for surgery. My surgeon was honest that there was a good chance that he could remove all the cancer, preserve my bowel function to a degree, and reattach everything, but I would have to have an ileostomy while the attachment healed and then once healed they could reverse the ileostomy. However, there still was the chance of having to have a permanent ostomy.
Despite having been in healthcare for almost 10 years and being in school for my RN, the idea of an ostomy devastated me. How would I hide it, what would I wear, what if it leaked? How would it change my body image, or my quality of life? In September, 2015, they were able to remove all the cancer and I came out with a temporary ileostomy.
It took time to adjust to this new part of me. I felt so alone as a younger person having had rectal cancer and now an ileostomy. Every doctor I saw after my diagnoses in May 2015 would start by commenting on how young I was to have rectal cancer. I tried a local ostomy support group for ostomates and everyone was kind but I found that I was about 25 years younger than any other member. I was lucky and found a huge online network of others my age with ostomies for various reasons and others who had survived colorectal cancer after being diagnosed young. I found that even though colorectal cancer is associated with people over the age of 50 there has been an increase in the rates or colorectal cancer in people under 50 and unfortunately I was not alone. I found others stories online and people who had been willing to document their journeys and provide tips on how to cope with an ostomy and still be active and live normally. I finally saw some hope that it was going to be possible to have an ostomy and good quality of life and that my ostomy was nothing to be ashamed of but rather something to appreciate for giving me a chance at being healthy and whole again.
I went back to nursing school in the spring of 2016 after having taken a semester off. It was not easy since I was still adjusting to my ostomy, working part time, and undergoing postoperative chemotherapy. Once again my family was there for me every day as I finished school, worked, and went to chemo. The healing process and journey with my ileostomy was slow. There were a few setbacks and hospitalizations. I encountered an infection and then a stricture that required frequent and uncomfortable doctor’s visits. I also underwent genetic testing because I was diagnosed at such as young age and was found to have Lynch syndrome. Lynch syndrome is an inherited mutation in mismatch repair genes which causes the person to have higher risks of developing certain types of cancer. It was found that the gene I had a mutation in put me at a higher risk for not only the colorectal cancer but also uterine cancer. It was recommend that I consider a hysterectomy, after having a family, due to the higher than normal risk of developing uterine cancer. Chemotherapy and radiation had already thrown me into early menopause and no one could say if it would be permanent or not. I decided to be on the safe side to go ahead with a prophylactic hysterectomy since I was already menopausal and there was a chance it was not reversible and I would not be able to ever have children anyway. It felt like a piece of me was being taken away. Having a family had not really been high on my priority list up to this point especially since I was single but just having the option gone and completely off the table was hard to process. Knowing that I will never have the opportunity to have my own child and to see what that child will be like hurts. However I do not regret my decision. I was able to have surgery for the prophylactic hysterectomy and reversal of my ileostomy in August, 2016.
I could not have endured this journey without my parents and my family and their unwavering support and their faith in God. Also I am so fortunate to live in America and have access to healthcare and to have had an amazing surgeon, Dr. John Trombold. I want to encourage others, even those who are in health care, to not delay seeking care or talking to a physician if you are having symptoms. I was embarrassed when I started having some of my symptoms and ashamed to seek care and do not want others to feel as I did. Even if you feel alone you are not and you do not have to suffer in silence. Also it is important to know your family history and to have these discussions with family if possible. Luckily because of my diagnosis my family has been screened and has been able to have the appropriate genetic testing. There are still a lot of unanswered questions ahead of me as I heal from my last surgery. I am happy that I was able to beat cancer and come out of this journey healthy. I spent so much time and energy fighting the cancer and just surviving day to day that I still have to process what being a cancer survivor means and looks like but I am thankful for everyday that I do have and for my health and want others who are still in the midst of their journey to know that they do not have to fight alone.