“My Voice” by Jaimie Mattes

It’s February 1993, I am in my senior year of college and I started my first job as a Hotel Sales and Catering Manager across from campus and I started to have irregular bowel movements within a couple of weeks of starting the job.  I attributed it to the stress of the new job and wanting to impress the management.  I went from 1-2 bowel movements per day to a dozen or more per day as well as waking up 2-3 times at night.  I went to the doctor after a couple of months of “trying to maintain the problems on my own” and he said it appeared that I had ulcerative colitis, but it was inconclusive.  He prescribed Sulfasalazine for me (2 pills per day) to help me with the problems.  The pills helped, but I never followed up again after that.

I started a new job in Minneapolis in July of 1994 and I finally found a new doctor and told him about my symptoms and he recommended that I get a colonoscopy to check things out.  I finally had this done in March of 1995. I only was able to consume barely 1/4 of the gallon jug.  I remember telling the Dr that I was nowhere near drinking the liquid and he said he could not do the procedure.  With the minimal amount of liquid I drank it completely cleaned me out.  I was vomiting and had horrible diarrhea.  To this day I cannot drink any lemon flavored water…or J-ello.

Following the procedure that day, the doctor told my dad, who joined me during the procedure, that I was a VERY SICK MAN.  I had ulcerative colitis, a fairly progressive form of it.  I still remember seeing tears well up in my dad’s eyes.  I was 24, in the prime of my life, and I could not control my bowel movements.  There were so many days that I would be working, and I was usually on my feet, that I would have to stop in mid step and tighten my sphincter and hold it in.  Once the feeling passed I could hurry to the bathroom to relieve myself (there were far too many times that I never made it to the bathroom).  This went on from 1995 to 2002 when I was diagnosed with colon cancer.  Over the course of those years my Sulfasalazine intake went from the two pills to about 15 pills per day plus 4-8 Imodium tablets per day.

From 1995 to 2002 I had annual colonoscopies.  I lived in Washington, D.C. from January 2000-April 2002 and I ended up having two colonoscopies in January and April of 2001 because they discovered low and high grade dysplasia throughout my colon.  I did not know what that meant, and it did not seem to alarm me.  The doctor never explained that my polyps were close to becoming cancerous.

I moved back to Minnesota in April of 2002 and immediately found a new gastroenterologist.  I made my appointment to see her and scheduled my annual colonoscopy.  I was finally able to see the gastroenterologist in August of 2002 and my colonoscopy was scheduled for the following month (six months later than I should have had it done).

When I was first diagnosed with UC I knew that I was considered high risk for developing colon cancer after about ten years, but thought it would never happen to me.

The diagnosis to this day is so vivid, September 19, 2002.  Every other time I had my colonoscopy done the doctor would call and give me the results.  This time, one of the nurses called me at work and said the results were in and the doctor would like me to come in and see her to discuss them and could I come today.  I asked the nurse, “What is wrong?  Why can’t you just give me the results over the phone?”  The nurse told me that the doctor preferred to always meet with her patients face to face.  I said I would call back. I then immediately called my wife to tell her what was going on and to ask her to come with me.  When I called the nurse back I said I would be there within the hour.  The nurse then said, “Is your wife coming with you?”  I told her yes, and she said, “Oh, good.  It is best that she be here too.”  I then went off on the nurse and said, “WHAT IS WRONG?”  She proceeded to say everything is fine we will see you when you arrive.

When we got to the office we were escorted into a room with three chairs, one facing the other two.  I said right away that this cannot be good news.  The doctor came in, sat down and said, “We got your results back and you have cancer.”  All I could muster to say was, “Ok.”  My wife started to cry and we held hands tightly.  I asked what my options were and I was given some surgeons to choose from as well as some procedures that needed to be done prior to seeing the surgeon.  The doctor gave me the choices and left us alone for a moment.  I shed a few tears and told my wife everything was going to be ok.

Once we were finished with the gastroenterologist for all of my follow-up appointments, I headed back to work to tell my boss.  I sat him down in my office and broke the news to him, but I could not say the “C” word.  I just said they found malignant tumors and over the next couple of weeks I will have some appointments that I need to go to.  He was like a deer in the headlights.  Looking back now I think it was because he was only a year and a half older than me.  My company was great through the surgery, time off and treatment.  I could not have asked for a better employer at the time.

On September 23rd, 2002 (my 32nd birthday) I was at the doctor’s office getting barium X-rays.  My mom called that day to wish me a Happy Birthday and then broke down and demanded that I tell her what was going on…what was I not telling her?  I fought back and told her that as I get the information she would be the first to know.  I almost always had a positive attitude through the entire process.  From the very beginning I told my wife and family that they had to stay positive around me.  I did not want to see any tears nor did I want anyone feeling sorry for me.  If I was going to be strong they had to be strong.  I know now that this was a very difficult thing for everybody.

It was recommended that I deposit my sperm just in case there were any complications with the surgery or side effects from the chemo treatment.  I was able to make two deposits, which I actually never had to use, but I did have complications from the surgery with some nerve damage and deal with it to this day.  The one story that makes me laugh to this day is the experience I had leaving the sperm bank.  After my consultation I was directed to my “room.”  I was nervous and thought how strange it was to be there.  I did as instructed and left my deposit in the cup and after I set the cup and clipboard on the shelf I was trying to get out as fast as I could.  I turned back to look at the “lab” in the center of the building and there was a female technician watching me leave with a HUGE SMILE on her face.  I called my wife immediately to tell her the story.  The Tech’s facial expression made me feel like she was saying “I know what you just did.”  I was back four days later.

I was in surgery October 9th to remove my entire colon and given a temporary ileostomy on the right side of my abdomen.  The surgeon said the procedure would take about 4 hours, but I was in surgery for almost six hours.  With no updates my family was getting pretty worried.  I was diagnosed with stage II colon cancer.  The cancer was growing on the upper left side of my colon, but the rest of my colon had high grade dysplasia throughout so they removed the entire large intestine.  The cancer had gone through the fatty tissue, but not the wall of the colon. This was good news, but the surgeon recommended that I schedule chemotherapy as well.  I spent a week in the hospital and felt better than I had in almost ten years.

On November 13, 2002, I had my first experience with chemotherapy.  I was to get six weeks on and two weeks off and do that for three rounds.  This would last for six months.  My first two cycles made me miserable.  I was weak, tired and depressed and wanted to sleep all the time.  I was only getting 5-FU and Leucovorin through my hand for 15-30 minutes each week.  The Oncologist said I shouldn’t be feeling that way so he reduced my dosage in half.

This minimal dosage was not a breeze by any means because I had other problems throughout my treatment that were somewhat related.

I was to have my drop down reversal surgery in mid December of 2002, but my surgeon cancelled it saying I was too weak to have it done and decided to move it to June of 2003 after I was off chemo for at least six weeks.

In January of 2003, shortly after I started my second round of chemo, I was out of town at my in-laws and I started to have chest pains late in the day that particular Saturday.  I never told anyone.  The pains were across my chest, it hurt to breath, my left arm was stinging and I could not get comfortable.  This went on for almost 24 hours.  I slept (if you call it sleeping) sitting up that night and the pain subsided the next day (Sunday) for a bit.  Once we got back home I ended up in the ER because the pain became so intense.  (I felt like I was having a heart attack).

After some tests I was told I had a blood clot on both of my lungs and I had to be admitted.  I asked the ER doctor for some pain killers, something to get rid of the clots and to be sent home.  I, once again, did not understand the severity of the situation.  I ended up in the hospital for another week.  I was put on a Heparin Drip and was told I had to stay in the hospital until my INR was at a consistent 2.5.  During the course of the week the doctors discovered that I had Factor V Leiden; a blood disorder that causes my blood to clot easier than a typical person.  I probably would have never known if I had not had my abdominal surgery.

In February of 2003, I got the flu and ended up dehydrated and in bed for 4 or 5 days.  I was rushed into the Oncology Clinic for three hours of fluids.  The oncology nurses were a little upset at me that I waited for so many days to come in.

In March of 2003, I had the ambulance at my home for an allergic reaction to Zithromax.  I was taking it for bronchitis.  I developed another blood clot in my arm from the I.V. that they used on me.  I was placed on Coumadin for good at that point.

I finished my chemo April 30, 2003.  My last treatment took place the week after my sister’s wedding.  It was a very emotional time for all of us.  I was hoping to be done with my treatment before the wedding so I could enjoy the entire event.  It was still a thrilling time for everyone, but I went home by 10pm because I was so exhausted.

In June of 2003, I finally had my drop down surgery.  I felt great when it was all done.  There were times when I contemplated whether or not to have it done because I felt I could live with the ileostomy, but I ended up having numerous days toward the end with intense pain due to a blockage in the stoma that even multiple Vicodin couldn’t help.  I must say, I LOVED the Vicodin.  I can see how people can get addicted to it.

The drop down surgery was a humbling experience.  Once my bowels started to work again I was pretty excited, but I still had no control over them for a couple of days.  I basically sh** my bed over and over again for 2-3 days and had to have the nurses clean me up and change my sheets.  All I could do was to apologize profusely because I felt so bad for them and it helped me be less embarrassed about the whole situation.

I begged to be released after seven days, but I ended up back in the hospital two days later.  I was passing blood in my stool and was in the ER early in the day, but went back home.  Later that evening I ended up passing out at home (on the toilet) and when I came to my dad was holding me, my wife was on the phone with the hospital and my mom was in hysterics with 911.   Once the ambulance arrived, everyone argued with them on where to take me.  The drivers and the officer said they could not take me to the University Hospital because it is out of their jurisdiction.  They finally got on the phone with the nurse at the hospital and she convinced them to bring me in.  Prior to that happening I told the EMT’s to leave and we would just drive to the hospital ourselves.  They would not allow it.

To help me through the treatment over the 9-12 months, I would occasionally write to family and friends in the middle of the night because I could not sleep.  Writing everything down was great for me because I got the feelings I was having out of me.  One of the people that I included in one of my writings was Katie Couric.  I admired her…ok, I had a bit of a crush on her.  She dealt with colon cancer with her husband and I wanted to tell her my story.  I did and to my delight she wrote me back and sent me a hat, shirt and picture of herself (all autographed).  Needless to say I was pretty giddy that this even happened.  I never expected to hear from her, but it truly brightened my days ahead.

Finally after this things started to go well.  I changed jobs, which was a bit of a mistake.  Fifty percent travel and my wife was miserable with me being gone.  I had read somewhere that many cancer patients change jobs after they finish treatment and that is what I did.  My wife explained that she worried about me for the last year and then I took a job where I am never home and she continues to worry about me.  I changed jobs again nine months after that…again making a bit of a mistake.  I then went into a job where there was no travel, but I was working day and night and weekends.  Since I worked in hotels I was now working on a new hotel and doing the pre-opening.  I left that job 15 months later.

In January of 2005, (four months before I left my last salaried job) I met a very influential woman in the Hospitality/Meetings Industry. She was doing a session on “Women’s Illness in the Workplace.”  I stopped by and asked if I could attend since I was not a female.  She welcomed me with open arms.  I shared my story with the group and she has since asked me to be a part of her session and panel on “Dealing with Serious Illness in the Workplace”.  She changed the name to attract other participants.  We now speak a couple of times a year with other cancer patients, survivors, as well as, caregivers.  It is truly a wonderfully healing experience.  I have made some great new friends and enjoy meeting with others around the country.

At this point I went into business for myself, helping meeting planners find locations for their meetings all over the world at no cost to them, and I have never looked back.  I finally found a job that I loved and this was now the meaning of life.  I believe in my product and my clients believe in me.  I had cancer, I survived and now I was my own boss.  Life is not about working your butt off for the almighty dollar. It is about respect and enjoying each day to the fullest extent.

I started to get more involved with the colon cancer efforts in MN.  I discovered “Get Your Rear in Gear” and participated in their third annual event in March of 2007.  I was on the planning committee for the 2008 event and I am hoping to help with the other events as needed around the country.  It was at the “Get Your Rear in Gear” registration pickup day that I discovered the Colondar.  The rest is history.  There is no stopping me now.  The more I can do the better I feel.  This is my passion and to raise funds for such a worthwhile cause is my meaning.  “Get Your Rear in Gear” even selected me as the Advocacy Advocate Award Winner for 2008 due to my efforts in helping to raise awareness on the prevention of colon cancer. I am currently on the 2010 planning committee for Survivors.  I am also working with the Founder of GYRIG in starting a Young Survivors Support Group because we didn’t have that when I went through treatment and it is only right that there is something for those of us under 50.

I felt that I got cancer for a reason.  I was “chosen.”  It took me 4 years to figure out what that was, and now I want to help in any way that I can.  I am reminded every day of my cancer.  Today, 5 years later, I still have bowel issues.  I have gotten pouchitis three times, am lactose intolerant and have a couple of allergies that have developed since my cancer.  My diet has drastically changed and I still have good and bad days based on what I eat.  I now have two beautiful children and hope that my medical history does not get passed on to them.

Having colitis kept me from running much because (mentally) I felt like my insides were getting bounced around.  It is still like that that, but I have finally made a goal for myself to train for a marathon.  I have run two small races and I train 3-4 days per week and I have feel better than I have ever felt in my life.

I talk whenever I can about Colon and Rectal Cancer.  I am passionate about it and cannot get off my soapbox when I am asked about my experience and what it meant to me.  If I can save just one person, and I have, that is what counts and makes living each and every day worth it.

My favorite quote is:  “When you face the unknown, you either find a firm place to stand on or you will be taught to fly.”  I do not know who originally said this, but it has been with me since before my cancer was diagnosed and I feel that this one quote speaks volumes about cancer patients everywhere.

This entry was posted on Wednesday, March 31st, 2010 at 10:34 am and is filed under written word and tagged with Colon Cancer, Jaimie Mattes, Ulcerative Colitis.