When I started blogging, I named my blog “Semicolon Stories” because it was a colon cancer blog. All of my posts involved surviving stage 3 colon cancer.
Several years later, I started this blog to talk about a variety of topics in addition to colon cancer.
My blogs are a good picture of the evolution survivors go through as we heal from our traumas. I’ve learned identity can fall outside of a survivor shadow.
But each March, I write and talk a lot about colorectal cancer because it’s a great time to shine a light on a preventable disease and a critical cause. And, I’ve got a colon cancer survivor story to share!
So, here is a dedicated colon cancer blog!
My colon cancer questions and answers.
To honor Colorectal Cancer Awareness Month, I wrote a list of the most common questions I get as a colon cancer survivor and wrote a colon cancer blog.
Sometimes, people seem afraid to ask me questions, they don’t realize I’m an open book.
So, if you’ve ever wondered these questions, you’re not alone. And here are my answers.
1. What were my symptoms?
My main symptom of colon cancer was blood in the stool, which I noticed for several years before I was diagnosed. (I didn’t speak up right away.)
The bleeding started out bright red, then went to a darker red and black. While it may seem obvious now, back then I was clueless about the blood being so serious.
I assumed I had hemorrhoids. (Read the full story of being diagnosed with colon cancer at age 17.)
Once diagnosed, I learned all of the signs of colon cancer and realized my sharp abdominal pains also were a clue. I assumed I’d eaten something bad over Christmas break.
2. Does colon cancer run in my family?
I get this question a lot, especially because people assume since I was diagnosed at age 17, it must run in my family.
We think my great-grandparents had colon cancer in their old age, but that didn’t trigger a genetic concern for me.
None of my close relatives have been diagnosed with colon cancer (to date).
I do carry a genetic mutation on MLH1, leading to my Lynch syndrome, but neither my mom nor dad do too.
This makes me the first “mutant” in the family (fancy word is “de novo”).
That’s a long explanation to say basically – no. Colon cancer does not run in my family.
3. Can I have kids?
In 2001, doctors recommended radiation for me. Before it began, I underwent surgery to suspend my ovaries into my abdomen – far away from the path of pelvic radiation.
This saved my hormone function.
The procedure succeeded (for many years afterwards, I had normal periods and the ovaries appeared to work). But, the procedure also meant I couldn’t conceive naturally.
As a little kid, adoption was put on my heart. It became a clear path for me after colon cancer.
Several years after Mike and I married, I asked my doctor about family planning options and she referred me to a reproductive specialist who offered in vitro support.
But, I didn’t carry a strong desire for biological children and I didn’t feel led to it, so I never made the appointment.
I felt exhausted from medical procedures and unsure of my body and a pregnancy. Plus, our hearts were set on adoption, so we chose that path.
I ended up scheduling a hysterectomy in 2012 due to Lynch syndrome, and now we officially cannot conceive (obviously).
I feel at peace with our path, and I see God’s hand all throughout our adoption story.
I do hope other young patients discuss fertility with their doctors before receiving any treatment. Guidelines have changed since I was diagnosed, and it’s a worthwhile discussion.
4. How on earth did I handle cancer as a teenager?
I get a variation of this question a lot. I usually smile, shake my head and say, “I don’t know.”
The truth is, I got through it the same way other patients get through cancer – one step at a time. While it may appear harder, being a teenager with cancer is easier than being an adult in some ways.
For starters, I couldn’t comprehend the threat to my life.
To me, cancer felt like detention. I wanted to hang out with my friends.
Because of my young age, I didn’t face the same shock of a “new normal” many other survivors do because as a 17-year-old, I didn’t have a “normal” to begin with.
The hardest part of colon cancer at age 17 wasn’t the grueling surgery or treatment. It was feeling disconnected from my friends who carried on with their own lives.
I felt forgotten.
This was before social media, so few people knew where I went and what happened to me.
That was tough.
5. Did I lose my hair?
I did not lose my hair although my oncology team said it was likely. My hair definitely thinned, but it didn’t fully fall out.
6. Who were/are my doctors?
Kansas City doctors managed all of my care, and they still do to this day.
I traveled to Houston and met with doctors at M.D. Anderson in 2001, but they agreed with my treatment team at home, so I came back to do all treatment here.
I am grateful to Dr. Marc Taormina, who is still my GI, because he didn’t let my age stop him from doing a colonoscopy and finding my cancer right away. He’s found both of my cancers, and he is a hero of mine.
My oncology team included Drs. Jorge Paradelo and Larry Rosen, both of them retired. It’s an odd blessing, I suppose, to need to find new doctors because the former retire. I’m glad to be alive, but I do miss them.
Drs. Ed Connor and Verda Hunter-Hicks performed my surgeries, both also now retired. I still see Dr. Connor’s predecessor, Dr. Lina O’Brien, for colorectal cancer surgery and advice.
Dr. Larry Geier helped me understand the genetics at play, although he’s since moved to Tampa. He did tell me I’m his first “de novo” patient, and he wants to name my mutation “Geier Syndrome.”
I’m OK with that.
For most everything else, I’ve transitioned to the KU Survivorship Clinic for my yearly oncology follow ups where Dr. Becky Lowry and Kyla the nurse navigator take good care of me.
7. How much colon do I have left?
Not much. The normal person has 5-6 feet of colon and I’ve got between 1-2 as it stands right now.
8. Do I have a really special diet?
Yes, and no. Plus, it changes.
I’m currently working on slowing down my bowels. I’m learning what foods I struggle with, and which foods are no problem.
As a general rule, I play it “safe” if I avoid large, fresh salads, nuts, popcorn, beans, fried foods, processed meats and heavy dairy products. Anything with a ton of flavor, especially spice, is a risk for me.
I’m learning how to eat everything in moderation, which includes stealing a few bites from the list above.
This is what’s working right now, but things change.
Colon cancer blog questions
Those are the main questions I get, but if you have a burning question I’ve not answered, leave a comment below!
I’m happy to shine a light on what it’s like for this 18-year colon cancer survivor!