February 2009

Jon’s Colondar Bio

Sponsored by Olympus

In his late twenties, Jon Olis began to see blood in his stool but shrugged it off until his fiancée pushed him to see a doctor. After a rectal exam, the doctor said he had nothing to worry about. He assured Jon that with no family history, it was probably just hemorrhoids.

It wasn’t until six years later that Jon went to the doctor again during a three-week bout with flu, severe diarrhea and rectal bleeding. He was anemic, so his doctor gave him a Fecal Occult Blood Test (FOBT) and it came back positive. Jon went for more tests, including a barium enema and a colonoscopy.

Jon’s colonoscopy showed that he had thousands of polyps and a large tumor in his colon. At 36, he was diagnosed with stage III colon cancer and Familial Adenomatous Polyposis (FAP), a genetic condition that causes colorectal polyps that turn into cancer. He had laparoscopic surgery to remove his entire colon, a second surgery because of complications, a temporary ileostomy and chemotherapy.

Today, Jon monitors his FAP with regular checkups and knows that his children will need to start getting screened in their early teens. He is in the best shape of his life and rides his mountain bike regularly, which makes him feel that he is literally “riding away from cancer.” He uses his experience to reach out to others to show that there is life with FAP.

Jon’s story as told by Jon

It all started in my late 20’s.  I began to notice blood in my stool.  I played a lot of volleyball and just figured it had something to do with that.  After a while I started mentioning it to Laura, my girlfriend at the time, wife now.  She would tell me to get to the doctor and check it out.  I would just put it off.  I didn’t like doctors and besides, it was just a little blood here and there and I felt great.  By the time I was about the turn 30, I’d proposed to Laura and we had plans to be married.  Now that she realized I was a keeper, she pushed me a little harder to get to the doctor, so I made my first ever appointment to see my doctor and told him I had blood in my stool.  He asked if I had a history of colon cancer in my family and I said no.  He did a rectal exam with a glass bulb thing and said yep, you have hemorrhoids.  I have nothing to worry about.

So off I went with a clean bill of health and a reason to ignore the blood that I would periodically see.  I’d done my due diligence and there was no need to suffer any more through exams like that one.  Fast-forward 6 years, no more volleyball, but now I’m mountain biking regularly and it’s March 2004.  I’m 36 years old.  I’ve gotten pretty decent at the biking and consider myself to be in pretty good shape.  I’ve put on 20-30 lbs over the last decade but who hasn’t.  I get a case of the flu and it’s a bad one.  Severe diarrhea and after repeated visits I start to notice the toilet turning red.  That’s odd I thought.  I must have really upset the hemorrhoids.  I’m still in denial.  I seem to get better but after a week I’m sick again, and still sick after three weeks.  My wife suggests I go see the doctor.  We have a 2-year-old daughter and she is pregnant with our son.  I’m not sure what good a doctor can do but I go anyway.

I tell the doctor about the flu but don’t bring up the blood in the stool.  I think I leave it out for fear that if I do he’ll want to do another one of those dreaded exams.  He says it’s probably no big deal with the flu but wants blood work done anyway.  A week later I get a message saying that the blood work showed slight anemia and he wanted to try and find out if I was bleeding internally and from where.  He orders a FOBC (Fecal Occult Blood Culture).  I do it and it comes back positive.  There is another message on my machine asking me to make an appointment for an Upper GI series and if positive to do a Barium Enema.

So I start getting a little concerned that this doctor is sending me for all these tests for no reason.  I remember saying something to the effect of, “These doctors will keep looking until they find something wrong even if nothing is wrong!”  So I do the Upper GI.  Drink the barium and take X-rays.  A week later a message on my machine telling me the results came back fine and to go ahead and do the Barium Enema.  Ugh, wasn’t looking forward to that one.  But I go forward and get it done.  Not the most pleasant of procedures but nothing compared to what is about to happen.  The technician performing the procedure is very talkative and assures me they won’t find anything.  Then he gets quiet, leaves the room and comes back with the doctor.  He looks at the images carefully and then says they are done and leaves.  I don’t think anything of it as all I can think about is getting my pants on and getting the heck out of there.

A day later I get a message from my doctors office – yep another message – that I need to schedule a colonoscopy and that it would be expedited and they wanted to do it next week.  First I needed to go consult with the GI.  So off I go, still thinking not much about this (read ignorance) and I go to see the GI doctor.  He comes in and tells me things look really bad.  I have a huge polyp (2.5 cm) and many shadows of more polyps.  He mentions the words cancer and polyposis.  He gives me instructions for the prep and wants to do a colonoscopy ASAP.  I drive home in a fog.  All I can think about is this is the end.  I’m going to die soon.  It was all very depressing.  I get home and freak out telling my wife what the doctor had said.  I might have cancer!  I read some stuff on the Internet.  That doesn’t help.  Everything I read about “polyposis” points to FAP (Familial Adenometous Polyposis) and more things to worry about.  I put the research off and figure I need to get this colonoscopy done.

I go in for the colonoscopy and the doctor comes in and tries to lighten things up saying he’s sorry if he scared me so much before and that sometimes these x-rays are deceiving and things probably aren’t as bad as they looked in the X-ray.  So they knock me out and do the colonoscopy.  My dad and wife are there in the waiting room.  I wake still in the middle of the colonoscopy, staring at a screen of my insides.  What I see is the continued process of harvesting polyp after polyp.  All I could think is, “Alright, there goes another one!” with each loop and snare.  It was very surreal and I was in a drugged state so it wasn’t alarming to me, nor did it seem abnormal.  All I knew was it was good he was removing these things.

The GI doctor saw 1000’s of polyps in my colon and he saw one big tumor in the sigmoid colon.  He wanted my dad and wife to see this first hand so there would be no doubt to them as to my diagnosis so he even put the procedure up on the TV screen in the private waiting room.  They saw what I saw and more.

So I went home groggy, knowing that without a doubt I had FAP and that a big tumor was removed and it was very likely cancer.  He told me I would need to have surgery to remove all or most of my colon either way, cancer or no cancer.  The next day the biopsies were back and it was cancer!  The fog came back.

He referred me to a highly recommended surgeon in the same building who I saw the next day.  I needed to have surgery soon, not tomorrow or the next day but he suggested I not put it off more than a couple of weeks.  I went to see the surgeon and after talking to him and my GI doctor decided to get an IRA (removal of the entire colon while keeping the rectum).  A more drastic procedure would have been to remove the rectum as well and create what’s called a J-Pouch.  I chose to keep the rectum and this was possible because my GI doctor spent about 2 hours on me, removing 60+ polyps from my rectum alone, knowing that my choice may be to keep it and he wasn’t sure who else would work so hard to clean the area.

Surgery was scheduled for one week later.  Every waking minute of every day was filled with the thought that I had cancer and I could die.  It was very depressing and very difficult to get past this big wall in front of me.  All thoughts continually would turn back to THE CANCER.

I tried to focus more on the upcoming surgery.  I’d found a great surgeon and the good news was he was going to do the surgery laproscopically so recovery would be quicker.  I was told the hospital stay would last about 3-5 days.  I went in for the surgery.  8 hours later I came out.  After about 6 days in the hospital my stomach was still distended, eating a bowl of Jell-O filled me up and I kept getting fevers on and off, crazy fevers that take you through the worst alternating chills and sweats you could imagine.  After a week I began vomiting.  I must have vomited about a gallon of the most disgusting green liquid ever (bile).  I felt better, but my doctor was concerned.  He put an NG (nasal gastric) tube in.  Now let me tell you, this procedure is regarded as the worst possible awake procedure a nurse can do to you and it was.  That night I tried to sleep but couldn’t.  The NG tube, which goes in your nose and down your throat, and into the stomach, would cause me to gag at every swallow.  That gagging would cause my stomach muscles to tense up and that caused a lot of pain due to my recent surgery.  I would have to say that night was the worst night of my life.  The uncertainty of everything coupled with the pain and discomfort.  It’s amazing how long a night can be.

The next day my surgeon orders a barium enema to test for leaks in the reconnection point.  Sure enough, I have a leak.  Waste is leaking into my body cavity and my body is heading towards being septic.  I could die if something isn’t done soon.  I need to go into surgery now to fix the problem.  So off I go to be cut open again.  My doctor warns that if the infection is too bad I may need a temporary ileostomy.  I ask him where he would put it and he points to a spot on my abdomen.  I wake up from the surgery and I’m informed I have an ileostomy.  I don’t care.  I just want to be out of the hospital.

The next day my doctor calls me with the report on the tumor and staging.  I had two tumors in my sigmoid colon, 16 lymph nodes were removed and 7 of them were positive.  I am stage IIIC.  No cancer has spread to other organs.  I am the highest staging for non-metastasized colon cancer.  We don’t discuss odds.

My last night in the hospital is the 4th of July and I spend it watching fireworks in the distance from my dark hospital bed.  All I can think about is wanting to spend it with my pregnant wife and 2-year-old daughter.  How amazing it all must be to my daughter, the explosions in the sky and how good a job daddy could do at explaining it all to her, and protecting her, holding her tightly on my lap, keeping her safe.

I really miss my wife too and wish I were there to help with things.  Handling a full time job, a two year old and being pregnant is tough on her without me around.  The fear that she could lose her husband isn’t helping either.  She visits me every morning and night in the hospital, somehow managing to find family and friends to watch our daughter and time off work so she can come to help me.  For me, the time in the hospital was scary and my wife was the only one that could make me feel safe.  She’d run around asking nurses for this and that and make sure I was getting taken care of.  Being in the hospital was such a crippling experience for me.  No control, tied to the machines, the pain, a new nurse every 12 hours.  Some nurses were amazing and competent and others that were just plan scary.

My father was also by my side through it all.  He visited me daily in between my wife’s visits.  Looking back I think this was the beginning of a new, stronger relationship for us.  To this day my dad always offers to take me to appointments or whatever I need, always wanting to be there and hear what the doctors want to say.  It’s very touching.  Thanks Dad!

Back home I begin to think about the Cancer again.  “What if this terrible disease takes me away from my daughter, my wife or my yet to be born son?”  They all need me in their lives.  I MUST be there for them.  I think of all the good times I would be robbed of if it all ends here.  And in my darkest moments I picture myself on my deathbed with my family all standing around me.  It’s all too much to think of, but these thoughts come back all too often over the next year.

Back home I begin to read about stage III colon cancer.  It has somewhere from a 25% to 72% survival rate at 5 years.  I hold on to the 72% but I know with 7 positive lymph nodes that my odds are not that good.  My engineering reasoning does not serve me well here.

I meet with my new Oncologist.  Another great doctor referred to me by my GI and surgeon.  I’d already researched the options and the standard 5FU/Leucovorin, which has been used for years, is being replaced by Folfox in Europe and is starting to be used sporadically by doctors in the US even though it hasn’t yet been approved by the FDA.  My Oncologist and I discuss the options.  We must make a decision between Folfox (the Big Guns) versus the standard protocol of 5FU/Leucovorin.  I choose Folfox and he agrees.  At my age it’s imperative that we hit the Cancer hard, so that’s what we do.

Three weeks after surgery I return to work, a desk job luckily.  Six weeks after surgery I start chemo.  Chemo was quite the journey.  It was tough, tougher now looking back.  When you’re in the middle of it, you have no choice but to accept it and make the best of it.  The chemo gauntlet of round after round was mentally and physically exhausting.  I continue to work through the whole 6 months.  I must complete 12 rounds, 1 every two weeks.  I’m excited to learn that my last round of chemo ends December 30th, 2004.  For some reason this makes it easier to grasp.  I simply accept the fact that I’m going to have lots of chemo this year, no chemo next year.

So I push along.  I work out through the first 4 rounds then stop.  My wife and I decide to go forward with a room addition we had been planning.  A Pregnant wife, house in shambles, roof removed and I’m getting chemo every other week.  It was more than a distraction.  To this day I’m glad I didn’t let cancer keep me from doing the things that were important to me.

My son was born on November 23, 2004.  I was on chemo and to this day I find it difficult to remember the whole event but at least it’s on video.  The end of December finally comes and Nurse Teresa unplugs me for the last time.  She gives me a big hug and presents me with their Purple Heart Award.  I tell everyone in the office that I’m going to miss them, in an odd way.  The next day is New Years Eve.  I manage a mini celebration then to bed early.  The next week I start my new workout regimen.  Now that chemo was over, I was going to get my body back in shape.  I was scheduled for surgery to reverse the ileostomy in one month and I wanted to get my body as healthy and strong as possible.

I had purchased a stair master for the home and I’d ride it for 20 minutes a day, then 30, and was doing 40 minutes before the surgery.  When I was done I would just about fall over.  I continued working out about 5-6 days per week.  My surgery came and I got through it and out of the hospital in 5 days.  Life was getting better. I healed and began to feel better and better.  By July I was feeling great.  One moment sticks in my mind.  A day without daycare for the kids and my wife needed to work.  I said I’d stay home with the kids (my now 3 year old daughter and 9 month old son) even though my job demands were against it.  The three of us went to the pool and had the most amazing day.  The baby slept, I played with my daughter, then my son woke up and I brought him in the pool.  Days like this can be tough but it wasn’t.  It was amazing.  This was one of those simple fulfilling days that you just remember the rest of your life.  Two days later I had an upper endoscopy laser procedure to burn up polyps in my duodenum (an FAP thing).  The procedure appeared to be a success until I began to experience severe back pain the next day.  By that night the pain was excruciating.  Advil did nothing to alleviate it.  I passed out once, and then vomited blood.  Off to the emergency room I went.  Luckily my favorite and very skilled surgeon was on call and he ordered a CT scan that revealed that my duodenum had been perforated and I needed emergency surgery to repair the leak.  Toxic fluids were leaking into my body cavity and I could die if the problem wasn’t address quickly.

So in I went for my 4th major surgery, with the same surgeon!  8 days in the hospital.  Plugged into internal feeding for another 4 days through a tube at home.  Drain tubes hanging out of me for 8 weeks and then on the road to recovery.  It’s weird but after this surgery I really stopped focusing on the cancer so much.  I joke with people but there is a lot of truth to this.  “A bowel perforation will take your mind right off cancer.”  And it’s true.  I realized this simple procedure might have killed me.  The prospect of the cancer doing it began to look less scary and somehow this lightened the cancer load on me.  I was also getting pretty good at surgery recovery.  Recover I did.

Around July of 2006 I began to get myself on the bike again.  The stomach muscles needed some work but I just took it easy and started to push it a little more each month.  A friend of mine suggested we put together a team to do a 12-hour team endurance mountain bike race in January.  I thought about it for about 10 seconds and said, “Let’s do it!”  I began to ride more and train harder.  January rolled around and we had a great time.  We were a 4-man team taking turns riding laps over 12 hours.  Each lap consisted of 10 miles, 1500 feet of climbing, and about 1200 calories spent over an hour with average heart rates approaching 170 bpm.  I managed 3 laps.  It was completely exhilarating and was so hard, yet so fulfilling.  I was immediately hooked.  To my amazement, I was the fastest on the team.  But it wasn’t really fair because I had a little extra motivation.  This was the greatest challenge of my life and I was doing it all after the cancer, the chemo and the surgeries.  The feeling of racing and pushing myself and getting faster and stronger became a major motivation for me.   When I mountain bike I try to find the biggest hill I can and then as I climb it I push myself harder and harder and do everything I can to leave the cancer at the bottom of the hill.  For me I am literally “riding away from the cancer.”

From this first race on, riding has become somewhat of an addiction for me.  I’m in the best shape of my life; I dropped 40 lbs and raced in 5 races in 2007.  My 4-man endurance team managed to win the 3-race endurance racing series and I pulled off another win in a solo race I did and another 3rd place finish later that year.

The cancer has taught me to push myself and it’s taught me something else.  It has taught me that cancer is real and cancer is scary.  I’ve taken this experience and tried to turn it into a good thing by reaching out to others with similar diagnoses to mine.  I lend a hand, tell them what to expect, let them see there is a light at the end of the tunnel.  This for me has been very rewarding and I feel if I can help just a few people every year, lesson the pain and suffering that someone will need to go through, then I’ve turned something bad into something very good.  Cancer has taught me to be more compassionate of people with disease.  Before cancer, I wanted to look the other way.  Now I look to see how I can help.

Looking back, I know cancer has changed me.  I feel lucky in a way.  I’m not sure other people understand me when I say this but, “I would not change my cancer experience if I could.”  I value every minute of it.  Every surgery, every drop of chemo, every day of recovery trying to get on my feet, walk, put my own shoes on, pick up my kids and hold them, ride my bike, climb that mountain, live life.  And all the chemo buddies I’ve made and stories shared are simply invaluable.  This life lesson is one that cannot be taught.  And it has really given me insight into the good side of us all.

Inside, I feel as though all this has made me so strong and I don’t want to give that back so I’m going to “Keep It” along with all the pain and suffering.  Many don’t understand this statement but it really is true.  “WE are the Lucky Ones.”  I’m referring to those of US that meet cancer face to face and defeat it, learn from it and grow from it.  I consider myself one of the “Lucky Ones”.

The opportunity to be in the 2009 Colondar has been simply amazing.  Through this experience I’ve managed to make an amazing new group of close friends and had the ability to share the stories with each other and just listen and be listened to.  It’s truly been an amazing experience and it appears it will continue to be for a long time to come.  The one thing that has been missing from my post cancer recovery is spreading the word and raising awareness about colon cancer.  Now the Colondar has given me a way to do just that.  Thanks Molly, Hannah, Erika, Krista, Mark, and Troy and all the others who make the Colondar possible.  You guys Rock!