Drip, drip, drip

I woke up this morning at 6 am. I felt lazy and sleepy but I knew if I was going to get a ride in, I needed to be on the bike by 6:30. I was moving slow, looking for excuses, and felt like i had a slight cold, party of me kept saying not to go but i told myself just get it done, go on an easy one…

This morning I was caught up in my head, feeling weak, most likely due to the fact that I was off to my oncologist for an iron infusion. Deep down, I know it’s a minor setback, but it’s still easy for me to feel less than whole because I need this at all.

So I’m on the ride and just thinking get it down! Don’t do an easy ride, so I head up my favorite trails to Top of the World, look at the ocean and then bomb the downhill.

I get back to the house feeling so much better and settled, ready to sit in an oncology office for 5 hours.

Glass half empty: the basic fact that my body needs this at all and I can’t maintain on my own. And the fact that basically I’m back in a chemo office getting a drip over 10 years after my colon cancer diagnosis.

Glass half full: I’m healthy and lucky I have the ability to be so active and this isn’t a big issue. I went two years without needing iron.

So I lay here in the chemo chair but it’s NOT chemo, just a little push to help my body be strong. Maybe I can go set some PR’S soon. 🙂

Fasting and Scopes…

It’s the morning of scopes and I feel like shit.  For some reason this never gets any easier.  You would think the act of consuming nothing buy clear liquids for 36 hours would get easy but for me it doesn’t.  Once the steady stream of protein and carb digestion ends, the body just starts to go off, no matter how much sugar based energy you feed it.

Yesterday afternoon was extra fun because I hit a complete energy low around 6 pm then started to develop a migraine.  Luckily, my realization that I could take tylenol saved me and a double dose of it allowed my headache to go away while I slept.

The feeling now the morning of is different.  My body has given up on the whole idea of food and is just kind of getting by.  I feel week and dizzy.  But its the home stretch, so its bearable.  In a couple hours I will be on my way to my scopes and it will all be over soon.  All part of having FAP and being diligent and watching for any changes yearly.

I don’t think I consciously worry excessively about the results of the scope because generally things are in check, any changes are small and nothing is usually alarming.  I think subconsciously I do freak a little.  It would be nice to have no adenoma findings in my stomach, an area that is common to have non cancer producing polyps in FAP, but finding adenoma’s there could be a problem if they become widespread.  So cross the fingers and hope for the best, plan for the worst.

Give me some good drugs, scope me on both ends and send me home all druggy to sleep most of the day.  Pretty much just along for the ride here.

10

Ten years ago today I woke in the morning feeling like crap.  As I got up out of bed, I felt something tugging at my chest and remembered I was connected to a chemo pump that was continuously pumping drugs into my body with the hopes that my 50% chance of having a recurrence of my colon cancer would be reduced to a smaller number.  But this day, I pushed passed the nausea, the aches and the general flu like symptoms with a little extra excitement.  Today I was going to get disconnected for the last time.

The reason, I had completed my 6 months of the Folfox chemo regimen and while I had survived it, it had definitely taken its toll on me and my body.  I tell anyone that asks, a single round of chemo isn’t really that big of a deal.  Its like having a mild flu for 6-8 days.  What is a big deal is doing it every other week for 12 rounds over 6 months.  Its a gauntlet effect that can really wear a person down.

When I started chemo I in the summer of 2004, I took excitement in the fact that the chemo would be done 1 day before New Years Eve 2004.  I liked the idea that the New Year would be a fresh start free of treatment and hopefully cancer free.

Today I sit here 10 years later and the treatment feels like a distant memory, but I still use New Years Eve as a way to celebrate a fresh start and to challenge myself to something new that will take advantage of the second chance I was given.  I’d to wish everyone health, happiness and a fresh start for something new in the New Year.

3/4 of a Colon and a Pancreas (Determination versus Adversity)

This title may be confusing to some.  Let me explain.  I had the pleasure to recently have a colon cancer reunion with a group of colon cancer survivors, one of which I have talked to online for a number of years, but never actually met in person.  His name is Brian Novak.  He’s a Colondar Model like me and I was his Imerman Angel (cancer big brother of sorts) when he was diagnosed.  So why the title?  Well, Brian had 1/4 of his colon removed due to colon cancer (I had all of mine removed) and he also has Type I Diabetes, so really a non functioning pancreas while mine works fine.

Well, we met up in Breckenridge, Colorado and since both of us are mountain bikers we decided to do some riding.  The first day we took it kind of easy and only road about 12 miles on a single track trail that climbed from about 9,500 feet to a close to 11,000 feet.  This was a fun ride and slightly challenging at times climbing steep forest trails with roots, rocks and snow.  Brian quickly showed he was no newbie leading the way through these technical sections.  We finished the ride with a fun 2 mile downhill bombing the trail in unison.

Day two came and we were looking at trail options.  It seemed all of the good rides consisted of at least 17-20 miles of single track with lots of climbing over 11,000 feet.  We picked one and went for it.

The ride started with a 3.5 mile climb to over 11,000 feet.  This was no joke.  The elevation was way different than riding at sea level.  At times it was necessary to give it everything to push up 100-200 foot technical sections only to stop at the top and take about 30 deep breaths before recovering.  Brian always seemed to be recovered before I was (we’ll just say that was due to his home being in Denver).  This particular ride was to be about 23 miles long.  At home on my trails that was a medium length ride.  At over 11,000 feet on mostly singly track where speeds are lower, it ended up proving to be a little more substantial a ride.

About 60% thru the ride we were feeling pretty good and we reached a fire road climb.  This climb started mild but just kept on going.  We stopped for a bar (we each packed one) and continued on, getting directions and a little extra food from another rider we met on the trail.  We hadn’t really packed enough food for such a long ride.  I noticed Brian looking at his insulin monitor quite a bit.  We started to discuss our options.  The rider that helped us told us we needed to get to the top of this 5 mile fire road then make it up over a steep 1000 foot climb then it was all downhill from there.  The problem was, we were really starting to bonk about 2.5 hours in on this fire road climb.  We took turns leading, mentally pulling the other one along until we got to the top of the fire road.

I took a moment to ask Brian if he was good, did he have enough food to maintain his levels and did he think we could get up over this climb and finish the ride with no food.  I wasn’t sure how careful he had to be being diabetic and all and to be honest I was not feeling all that great.  We both really wanted to finish the ride though, as the only other option was to turn around and go back down the fire road and call for a pick up.  That just wasn’t cool and didn’t really seem like a viable option.

So on we trudged and the last climb was a tough one.  Steep, rocky, snow covered sections.  We walked, we rode, we walked, we rode.  And finally we reached the top.  And with a sigh of relief we bombed down one of the most amazing downhill forest trails ever.  We made it out to the road and got in the car to drive back into town.

We each kind of looked at each other and were amazed we’d just completed a 23 mile ride with 4000 feet of climbing over 11,000 feet elevation and about 3:45 minutes of pedaling.  We bumped fists and headed back to the lodge to put down some much needed calories as it was about 3 pm by this time.

Were we able to complete this because of our past adversity?  Did it make a difference?  Maybe the challenges we’d faced in the past drove us on.  Maybe quitting was not a word in our vocabulary.  Brian with his Diabetes and Colon Cancer and me with my FAP, lack of  a colon and Colon Cancer.  I guess will will never know.  But one thing is for sure, I gained a new riding buddy that day and someone I will call my friend for life.  Cheers Brian.  Well done!

Never Give Up!

Scopes from the eyes of my 12 year old…

If you’ve been keeping up with my blog, you know that my daughter, Skyler, was scheduled to have an upper EGD and a colonoscopy early September before schools started back up.  Our new pediatric GI recommended0 scoping around the first 10 years of life for kids at risk for FAP.

Below is her thoughts on the experience (mine to follow):

My experience of having a colonoscopy and upper scope kind of went by in a blur.  The prepping I remember quite well though and it wasn’t much fun.  But even though I didn’t have fun fasting on clear liquids for more than 24 hours, it wasn’t too bad.  I had two of my closest friends over to keep me company.  The worst part was drinking 30 oz of the magnesium citrate liquid because it tasted so bad.  You don’t start to feel hungry until 4 or 5 pm.  By the next day, you aren’t hungry.  Just kind of tired and cold.

At the hospital, a lot of people came in and asked me if I had any questions and every time I said no, because my dad already explained everything to me and he also asked me if I had any questions a lot.  Then when they finally took me into the room where the procedure would take place, they put drugs in me and all of a sudden, it was over just like that.

Waking was kind of like waking up from the best sleep ever.  I was pretty out of it and my first instinct was to go back to sleep because I was so groggy.  But then I started to wake up more and more and I no longer wanted to curl back into a ball and sleep forever.

The results were also motivating because they found that I had no polyps and wouldn’t have to come back until I was about 15.

Beforehand, a lot of people were asking me if I was scared at all and whenever I said “not really”, people told me how brave I was.  I would just shrug my shoulders.  I think the reason I wasn’t nervous was because I knew that the reason  I was doing this was to help prevent worse things from happening.  I believe that the reason other kids might be scared is because they see this as someone telling them that they might have cancer and then in their mind they may think of how cancer often relates to death.  So all those kids out there going through this, I say a great way to stay strong is to look at this and see themselves as beating this whether it turns out to be in your genes or not!

My thoughts (from the dad):

As I discussed in my previous blog, I was pretty apprehensive about the possible results.  My kids have always been an unknown since my diagnosis and now we would actually get some results.  I’ve always sort of just felt that they would not get the defect and therefore would not inherit FAP from me.  But I have no basis for this, just wishful thinking or maybe it’s how I manage to get by without too much stress.

Well, I handled the whole thing pretty well because she was a real trooper.  So many nurses came up to her before the procedure asking her if she knew what was going to happen to her and if she had any questions.  She was like “no, I’m good” with a smile, my dad has this done all the time and he has asked me a lot if I have any questions.  She was so strong, I was very impressed and proud.  I felt relieved to see how brave she was.  Braver then me I think.

What kind of surprised me was the feelings that built up when they wheeled her back behind closed doors.  I started to feel uncertain, I started to stress and I started to even get mad but I couldn’t tell who I was mad at or why.  It was not a feeling I had experienced before in that way.  Luckily it was over soon and the doctor gave us the good news that no polyps were found and she had a clean bill of health.  What a freaking relief!

So what does this mean?  It means she does not currently show polyps so we just need to scope again in a few years, probably 3.  If she continues to not show any polyps into her early 20’s then we will start to feel comfortable she does not have FAP.  For now, we’ll take the clean bill of health and run with it.  It’s such a huge relief we aren’t dealing with anything more serious at this point.

Please not the children…

Well, the time has come that I’ve tried to keep out of my mind since I was diagnosed with FAP and colon cancer 10 years ago.  My 12 year old daughter, Skyler, will get her first colonoscopy and EGD on next Wednesday.  The reason for the scopes is to see if she is forming polyps and to determine if she has FAP.  This is all due to the fact that I do not test positive for any of the known genetic defects for FAP.  If she has polyps of a particular type then FAP will be confirmed.  No polyps and we scope again in a few years.

I really don’t want to put her through this but its better than not knowing.  So Tuesday she will do clear liquids and prep and Wednesday she will be sedated and scoped.  In my mind the only possible outcome is that they will find nothing.  I can’t grasp the thought of a polyp or two confirming she has FAP.  I just can’t go there.  I will deal with that if it happens but as far as I am concerned it won’t.  It can’t.  Because if she does have FAP, then that means I gave this to her and that will be very hard for me to deal with.

However, I will not go dark if that happens.  I will support her and educate her and teach her how to deal with this head on.   And if she is diagnosed with FAP, I hope that it will make her a better and stronger person as I feel it has with me.

I’m very impressed with her.  She’s really handling it like a real pro.  I keep asking her if she is good, if she wants to talk about it and she shrugs her shoulder and says “No, I’m fine.”  She’s really quite amazing in her strength.  I’m super impressed and I love her for it.

My son Jared is turning 10 soon and the doctor recommended scoping at 10.  He was not aware that Skyler and him would need to be monitored.  He does not like to talk about medical stuff so we try not to get into it with him.  However, we did feel it was necessary to now bring it up since we may scope him next year.  We thought this was a great opportunity to tell him and show him through Skyler’s experience so we did that last night while playing Uno.  He cried a little and asked a couple questions but all in all he handled it pretty well.

So a few deep breaths and we will move through the next week with our fingers crossed and will hope for the best but plan for the worst.

10 years cancer free, racing and more procedures…

10 years ago today I was on my way to the hospital to have my colon and two cancerous tumors removed.  Going through that surgery, and multiple others and 6 months of chemo was by far the hardest thing I’ve ever had to do.   At most times it all seems like a distant memory but at times it still feels close.

I was on clear liquids yesterday in preparation for swallowing a small camera pill that would travel through my body taking a continuous video of my small intestine looking for any concerning polyps that may be hidden deep inside me out of reach of a normal scope.

I’m not really too concerned what they might find, well… maybe a little bit concerned.  There is always the waiting and wondering but for the most part I believe I will be fine.  Rather than freaking about this I am trying to ride the high from being cancer free for 10 years and from winning another mountain bike race on Saturday.

The race was a time trial event where a rider is released every 30 seconds.  The start of the race consisted of the toughest hill I know.  Its called Dreaded and it averages 14% grade over 1.1 miles with about 660 feet of climbing.   But worse is the 20+% grade over the first 4 minutes.  Talk about a warm up!

The course is not long and its mean to be a pretty much all out as hard as you can go race.  Its only 4.5 miles long but its tough.  Last year I pulled a 25:50 so I was pretty impressed with my time of 24:15 this year with personal records on every segment of the course.  Oh and I took 1st place too!

So its a mixed situation.  My health is great, I’m riding faster than ever and I feel great.  But… I still have continued tests to ensure I do not get cancer again.  With FAP I have to stay on top of things medically so that is what I will continue to do.  And in the mean time, I will keep racing to prove to myself (and others) that I am healthy and am not going anywhere.

 

Sometimes we freak out a little…

So after my last results from my scope I was pretty bummed about the adenomas in my stomach and small intestine.  I’ve had a chance to read up a little and talk to my doctors and I’ve learned that adenomas in these areas are really not as concerning as they would be in the colon.  The tissue is different and it just doesn’t promote development into cancer as easily as the colon.

So… I guess that means I can relax and keep killing it on the bike and living life and not stressing about the little things.  I do need to be diligent and continue to monitor my health yearly but I think I will be fine.  Its just the side affect of my genetic defect.

I will be having a camera pill to visualize the small intestine on June 24th but I will be killing it in my next race June 21st so my focus will be on that!

So many people reached out to me with concerns.  I want to say thank you to those that did,  I really appreciate that.  I felt the need to update things so no one would worry about me.  I’m really pretty lucky.  I don’t ever get sick and I’ve yet to find boundaries on my physical fitness so I am very fortunate and wish others could have it as good as I do.

 

Good news/Bad news

So I had my yearly scopes last week.

Just a reminder for those that don’t know, I have FAP, a genetic defect that causes me to grow polyps, lots of polyps, and they’re the type that turn to cancer unfortunately (adenomas).  For this reason I had my colon removed 10 years ago due to these risks.

So yearly I get the remaining bit of my colon (rectum) scoped and my duodenum as well via an upper scope.  During this years scopes they actually found about 6 polyps in the rectum (not great), none in the duodenum (good), 20 in my stomach (not so good) and a few in the beginning of my small intestine (not great at all).

So my doc called tonight.  The biopsies came back and the polyps in the rectum, stomach and small intestine were all adenomas, the type that can and will turn to cancer.  They were all removed which is good but not all of the small intestine can be viewed during this scope, in fact only 2 out of 25 feet can be viewed.  So the rest is kind of an unknown at this point.

The concern is what might be going on in the un-viewable areas.  For this reason my doc wants to do a camera pill.  This is a camera you swallow that takes pictures as it travels through your entire digestive tract.  So we’re working on scheduling that soon.

Also not good is the formation of adenomas in my stomach.  In fact, adenomas in the stomach and small intestine are both not common with FAP.  So I guess I’m special.

I worry about things progressing and getting more aggressive.  I’ve heard of stomach polyps getting so numerous that they can’t all be removed.  If that happens to me it could be very difficult to manage and might require the removal of my stomach.  Not good!

And if polyps that can turn to cancer continue to grow in my small intestine it just means more procedures for me.  It looks like a camera pill every other year and if anything looks suspicious, then a single balloon endoscopy procedure used to visualize the entire small intestine would be required.  Kind of wanted to avoid this procedure as it has risks.

So in general I’m feeling a little bummed tonight as the news was not as good as I had hoped.  Its still way better then many are dealing with and I am sure I will have my head around this soon.  Just need a day or so.

Well, enough with the bad news.  The good news!!! I’m in the best shape of my life and continue to push it racing mountain bikes .  I have a new bike being built and delivered this week and I have a feeling this new news is going to push me a little harder.  Personal records here I come.

Can’t always come in 1st

 

I raced today in the first race of the OC Race Series I’ve been doing for 3 years now. It was one of the most exciting races ever but I’ll tell you now, I did not win. Sometimes just doing our best is all we can do. If you’re interested in the race report read on…

So that race started with 8 guys in my category. The race consisted of 15 miles and about 1800 feet of climbing. This is a mountain bike cross country race for those new to my blog. The course consisted of a 10 or so minute flat ride out to the race loop I would be doing 2 loops of.  Each loop consisted of a 600 foot, 1 mile climb, very steep, some ridgeline rollers followed by a technical downhill singletrack with a big rock garden in the middle of it, then a flat single track ride back to the finish of the loop.

So I knew one of the guys that came out and knew he was faster then me. His name is Paul. He beat me by 8 minutes in a longer race last year so I knew I need to play it right to win. We rolled out average pace. On the flat I didn’t want to lead because everyone was just drafting behind me. So we played cat and mouse and finally go to the big climb. He pulled away on the 11 minute climb by about 30 seconds.  On the ridgeline I could still see him and I knew I was a better technical downhiller and could maybe catch him. I got the the downhill and bombed it. I saw him ahead and 3 other riders in the rock garden. There is the safe slower right side line and the faster straight thru the rocks left hand line. I bombed the rock garden and past all 4 of them. At the bottom I could not see him so I just hammered on the single track back to the start of the second loop. I still could not see him as I started the climb. About 2/3rds the way up I saw him coming up. He got on my wheel and stayed there until the ridgeline and I bombed the technical part of the course again and left him behind by probably a minute. I made the turn at the bottom for the 8 minute ride out to the finish. I kept looking back but did not see him.

A couple minutes later I saw a pack of expert riders (fast guys) coming up, I jumped on their wheel and hung with them for a minute or so then backed off. Paul was there at the back. He used them to pull himself back up to me. We played cat and mouse all the way to the finish. The last hundred yards I sprinted for the finish and had him but there was a technical left hand thru a wash 20 yrds before the finish.  He cut the inside and I had to back off or crash.  He took my at the finish by 2 seconds!

Was I a little bummed?  Yes.  But I rode hard and set 26 PR’s on a course I ride a lot.  There will be other races.  I realize I am lucky to be able to do this 10 years after a cancer diagnosis.  Many others are not so lucky.