All my life I’d taken care of my body. I had a large organic garden and did a lot of canning and freezing. I didn’t eat red meat. I got plenty of exercise, was a non-‐smoker and had never been overweight. I started annual mammograms (except when I was pregnant or breastfeeding) at the age of 21 due to some issues I had. I was faithful about my annual female exams and pap smears. This is how my aggressive cervical cancer was caught early, and I beat it after a few years of surgical procedures – I’m over 7 years cancer-‐free from cervical cancer now!
I’d always suffered with GI issues, and had IBS. I learned to manage it with diet and exercise. For over a year I had severe pain when my bowels moved (even just repositioning after a meal), and on and off I had blood and mucous in my stool. I complained that I had bad pain even if though the stools were usually very thin and soft. This was not constipation pain. I did go to the doctor, but he was stuck on ”IBS” mode. I’ve had IBS for as long as I can remember, but keep it under control. I really didn’t feel this was IBS. So when the IBS meds weren’t helping, I just quit going to the doctor.
The end of August 2009 things had gotten even worse, plus I was still having kidney pain from a recent kidney infection. I saw the Physician Assistant and she took my complaints seriously. A CT scan was ordered. The radiologist suggested probable mild sigmoid colitis with reactive lymph nodes.
Due to the suggestion of colitis, after my pressing that something was still wrong, a colonoscopy was ordered -‐ to confirm the diagnosis. I expected to hear I had colitis or Chron’s disease. But on August 31, 2009 shortly after the scope started, it was over. Half-‐way up my sigmoid section of colon there was a large tumor, almost blocking the entire colon. The GI Dr tattooed the spot and called the surgeon. He told me that he could sugar coat it, but preferred to tell it straight. He’d seen enough cancerous tumors to tell me that he was 98%+ certain that this large tumor was malignant. And it needed to come out right away, before it totally blocked my colon. My life was forever changed at this moment.
Within minutes the surgeon’s office called me with a pre-‐op appointment the next morning, and a surgery time for the following day. Talk about being in shock! How could this be? I am a female under age 50, mostly vegetarian (no red meat, high-‐fiber, low-‐fat diet), non-‐smoker, not overweight, and no known family history. Isn’t colon cancer a fat old man’s disease? That is how I thought of it before I knew better.
I had surgery and it went well. The colon tumor was malignant, but my margins were clear. So at age 47, after 2 years of misdiagnosis, I was diagnosed with colorectal cancer, before the “magic” screening age of 50. Unfortunately the tumor had grown out through the colon wall into the surrounding tissue, and 5 of the lymph nodes tested positive for cancer, which meant I needed follow-‐up chemotherapy
After meeting with the oncologist, I had a PET scan and while new spots lit up. So that was followed up with an MRI. My staging was still undetermined. I was staged IIIC or IV, and hoped to never know for sure which it was. I went ahead with chemo for 12 bi-‐weekly cycles, which was finished in April. I was declared cancer free in May 2010. I tried to get back to life as usual.
At my 3-month lab re-‐check, my CEA (cancer marker) was up. A PET scan showed abdominal and para aortic lymph nodes enlarged and metabolically very active. A core needle biopsy confirmed cancer, consistent with colon cancer. I’ve been back in battle since fall 2010 doing chemo for over a year again.
I did lots of research, sending my records for second opinions and always trying to keep up with new developments in the colorectal cancer world. First time around, the second opinions confirmed that I needed to do as suggested, and keep up with chemo, because with the placement of my tumors, it was the best option. After I got rid of those tumors in a tough spot with chemo, but still had the abdominal tumors and some new ones, it was time to re-‐assess. I didn’t do well with chemo, with many problems beyond the “normal” chemo side effects, including some bad allergies. It was time to advocate for myself and search options again. I really didn’t know how much longer I could continue chemo.
There is a time to compare quality of life to quantity of life. I have four children who were 23, 19, 16 and 14 when I was diagnosed. I was prepared to do anything to stick around for them. But after a couple years you begin to look at things a bit differently; quality matters. I pushed for a special type of radiation and didn’t qualify. But I did qualify to try regular daily radiation, which I did for 2 months at the end of 2011.
Recently I learned more family history from my paternal side. My grandmother that died in the 1960’s of cancer (when she was in her 50’s) actually had a primary colon cancer – the rest was metastases too far advanced to do anything about in those days. Had this been in my medical files, my primary doctor would have been less likely to dismiss my symptoms as IBS. It is very important to know your family history and get it in your medical files.
For the holidays 2011 and the start of 2012 I had a fabulous break from all treatments! I even went backpacking with my two oldest (daughters now 25 and 22), and have been so excited to get out and experience life fully again! I’ve lived beyond what was expected for anyone with stage IV colorectal cancer with metastases to Para aortic lymph nodes. I figured there is a reason I am still here, and I need I am doing my best to fulfill that reason.
My mission is to educate and advocate for colorectal cancer awareness and screening, and push for more funding for research, along with helping other patients advocate for themselves. It is time that BLUE means as much as “pink” to people. I realize that breasts are much nicer to think about and talk about than colons and rectums. But all body parts are equally important. Every girl over the age of 10 now knows about self-‐exams and that they need to know family history and have mammograms starting when they are age 40 (if not sooner). They know that if they find a lump in a breast or armpit, that it isn’t normal and they need to see their doctor. The pink campaign has done its job, and done it well. It is time that people become at least as educated about “blue” for colorectal cancer – especially since more people (male and female) are diagnosed with colorectal cancer, and more people (both male and female) die from colorectal cancer than any cancer other than lung cancer in the US every year.
As of now my CEA is climbing again, so we’ll have to follow up and start a new plan of action. I’ll be back to the “whack-‐a-‐mole” game, and will continue it as long as I possibly can.
I’m “Getting My Rear in Gear” to fight colorectal cancer in many ways for 2012. I’ve gotten a Proclamation from the Governor of Minnesota to declare March as Colorectal Cancer Awareness month. I’m going to Washington D.C. to call on my representatives for the Digestive Disease National Council’s Public Policy Forum and Fight Colorectal Cancer’s Call on Congress. For the third year I’m participating in Get Your Rear in Gear’s 5K Run/Walk, and will be our team captain again. For the third year I’m captain of a Relay for Life team for the American Cancer Society and will be speaking at this year’s opening ceremonies. I am the honorary chair for the Selke Hall Team at the University of North Dakota’s Relay for Life. I started a colorectal cancer support group for those that live in the south of the river suburbs of the Twin Cities, and facilitate that twice per month. I’ve found so many ways, that even with cancer, I can help others. I’m determined to do that as long as my health allows.
Of any of you reading this has abdominal/bowel pain, blood in stool, mucous in stool, or a change in stool size (too thin stool), or change in bowel habits without explanation, please have a colonoscopy as soon as you can. If you have any first-‐degree relative (parents, siblings) with tumors OR polyps, found prior to age 60, you need to be checked 10 years prior to their diagnosis. Any of you over age 50 that have not had a scope yet, or are due for a repeat colonoscopy, GET YOUR REAR IN GEAR to get it done now! It could save your life. I guarantee you a colonoscopy is a very simple thing compared to surgery, chemo, radiation or death. There is nothing to be embarrassed about if something in your body isn’t working right. See your doctor. Colorectal cancer is the most preventable, treatable and beatable cancer if caught early. Please be an advocate for your own health and stay on top of your screenings and your overall health!