Personal Stories

Heidi

I was diagnosed with stage IV rectal sigmoid cancer at the age of 31.  I had no family history for the disease, and I was well below the "normal" age range.  My first sign that something might be wrong was when I noticed some blood when I went to the bathroom.  "Probably just a hemorrhoid," I thought.   I knew, though, that blood in the stool or urine was something that should be brought to a doctor's attention.  When I saw my doctor months later with no reoccurrence, I mentioned it in passing and he concurred it was probably a hemorrhoid. 

In July of 1997, I started a new sales job that required travel.  I started noticing that sometimes after I flew, I'd have some constipation and a little blood on the tissue.  I was so busy working and traveling that I figured the new schedule and travel was throwing my system off and causing the hemorrhoids to act up.  Even so, there were months between symptoms and each time I'd write it off.  I figured if it was something serious, I'd have other symptoms or it would be happening more frequently.

Fast forward to a year later, it was July of 1998.  I had just returned from a trip to Yellowstone and Glacier National Parks with my coworker Julie.  We'd had so much fun hiking and white water rafting but, after a summer off, it was time to get organized and make plans for the national sales conference.  I made what turned out to be a fateful decision to visit my parents in Florida on the way to NYC before the conference. 

A couple weeks before I went home, I had a bowel movement that looked like it was marbled with blood.  "Whoa," I thought, "that does not look right!"  I called my mom and had her make an appointment with her gastroenterologist.   

The gastroenterologist told me she could see the blood but couldn't see the source and that she'd like to do a colonoscopy on Monday.  I didn't want to spend my vacation drinking bowel cleanser and doing a colonoscopy but her caution saved my life.  She found a lemon sized growth in my colon. I was admitted to the hospital that day, and I was operated on the next.  During the course of the surgery they resected my colon at the rectal sigmoid bend and removed a foot of my colon.  They also discovered a small two-centimeter lesion in my liver, and they resected that lobe.   

I had a double lumen port installed in my left shoulder. One week of every month they hooked up a line to the port and I received my dose of 5FU and leucovorin.  (All the current drugs were in trials and not available for my use.  I thought about a trial, but my oncologist doubted I'd be chosen since all the visible cancer was removed during my surgery and there'd be no way to track if a new drug was working. ) When I felt nauseous, they'd add a round of Decadron.  I'd spend about 20 minutes hooked up and then I'd be off.  My side effects were pretty mild – I lost a little hair, a little weight, had mouth sores and an urge to know where a bathroom was at all times!  My oddest side effect came while I was completing my radiation therapy – I became lactose intolerant.  I can only guess that the little cilia in the colon were temporarily stunned by the radiation.  I know my oncologist thought I was a little crazy, but all I can tell you is that after my breakfast of milk and cereal my stomach would swell out like I was 3 months pregnant and I could hear hissing and popping in my colon (no, I wasn't eating Rice Crispies!).  Once I made the connection to milk, which can be difficult to digest, I began drinking Lactaid milk and popping Lactaid pills whenever a food contained milk products.  Luckily this was not permanent, and after 3-4 months, my cilia recovered and I was able to eat milk products again.

After two months, we began my radiation treatments.  I did 28 days of radiation and was switched to a pump for continuous infusion chemotherapy.  I found the regimen of radiation and chemotherapy to be grueling.  By lunchtime, it felt like a fog was pressing down on me and my energy was gone.  I'd sleep for a few hours, eat dinner and then be back in bed.  Fatigue, lack of motivation and finally radiation burn marked this time for me.  I completed eight months of therapy and experienced increasing fatigue as the treatment progressed.  I finished in May of 1999, spent the summer regaining my strength, and then returned to work.   

On August 17, 2009, I happily celebrated my 11 year anniversary.  I had my final CT, X-ray and a bonus PET/CT scan and all was clear.  I have been cancer free since my initial surgery and was released from my oncologist's care in January 2009.  I continue to monitor my blood work and have a colonoscopy scheduled in early 2010.

I was always the youngest in the treatment room.  Although my oncologist assured me he was treating about 10 people in my age range, I only saw two people my age during the whole treatment, and I felt like I was the only one my age with colon cancer.  I was desperate to know that I could survive a "terminal" diagnosis.  This was not how I planned to spend my 30's!  I finally found a community online and "met" other people, some even my age, with similar diagnoses.   It was a relief to know I wasn't alone and that someone knew and understood just what I was going through.  This community eventually gelled into what is now the Colon Cancer Alliance.  I have a master's degree in counseling, so I immediately signed up to be a buddy.  I wanted to give back that support that was given to me when I was going through treatment. I sometimes joke that I am not quite as popular as a buddy, since most people want to know what to expect with certain drugs and I only had to old drugs. The best thing I can offer as a buddy, though, is hope. 

I decided early on in treatment that I had a choice.  If I only had so much time to live, did I want to live my life with despair and depression or hope and joy?  Every day I chose joy.  I figured if my odds were one in whatever, then why couldn't I be the one?  Why couldn't you be the one?  If I can celebrate my 11th year anniversary surviving stage IV rectal cancer while only having been treated with the old drugs, what can you accomplish with the new therapies?  There is more and more hope for survival, but there is still more education that needs to be done. 

This year I was lucky enough to be chosen to be a model for the Colondar (www.colondar.com) -- a calendar that tries to raise awareness about colorectal cancer in those diagnosed under the age of 50.  I found out about the Colondar through the CCA.  The CCA encourages young survivors to apply and sponsors a month of the calendar each year. I was lucky enough to meet two other active members of the CCA during the Colander shoot. Organizations like the CCA and the Colon Club (the non-profit organization that sponsors the Colondar) play a vital role in raising awareness and educating about colorectal cancer, one of the biggest cancer threats.

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