First race complete now time for scopes

I completed my first mountain bike race of the season recently.  It was an exciting race.  28 miles long with about 3000 feet of climbing.  I started in a pack of 154 riders and managed a very respectable 30th.  Not  bad considering I was racing against all levels including pros.  2 hours 6 minutes and it was over.

I owe it all to my continued health which I am very lucky to have.  I know many other FAP’ers  struggle with many issues related to the disease.  For now I plan to continue and ride it like I stole it!

This time last year I’d been dealing with anemia for over a year.   But ever since a couple iron infusions I’ve been stable and seem to keep getting stronger.  For this, I am grateful.

I’m scheduled for my yearly scopes May 14th.  They’ll check me for polyp growth in my duodenum and my rectum.  I don’t really consciously worry too much but I do think I subconsciously worry a bit.  I tend to find myself more easily getting annoyed by little things.

I guess the fear that my thus far stable duodenum and rectum could change and start aggressively growing polyps is always a possibility.  If my duodenum becomes unstable it could require a major surgery called the Whipple. If my rectum became unstable I could have to go back to having an ileostomy again.

I really don’t want to have to go thru either one of the surgeries so for now I will just continue to ride, enjoy life and keep my fingers crossed and be grateful for my current health.

 

 

 

 

 

 

 

 

 

 

 

 

At least I have my health…

The saying I heard all my life from people trying to put a positive spin on a bad situation was “Well, at least you have your health”.  That always sounded like some sort of consolation prize to me.  Like it didn’t really matter.  But you know, I get that now.  Without your health, all else really doesn’t matter.  I know people that are fighting with cancer, pain, constant issues and that totally distracts from everyday enjoyment of life.  So take a moment and appreciate you health if you have it.

Along the lines of health, I’ve taken a new approach to fitness this winter.  In past years I would drop my riding from 4 days a week to 2 days a week in the winter just due to short days and difficulty getting time to ride.  When I would do this my times would drop and I’d have to rebuild speed back up in the spring.  This winter season I took a different approach.  I tried to stay active with some type of activity 5-6 times per week.  This has consisted of a couple days of volleyball for core strength training, a couple days of riding to keep the legs spinning well, and a day or two of lifting and core exercises with some cardio thrown in.  I’ve added protein shakes to the mix too.  After a hard effort when the body feels really fatigued I will load up on protein.  I’m also focusing less on overall weight and more on strength.  I have gained on average about 3-5 lbs but my waist size has not increased.

The results…  Well, riding only two days a week for the last 3 months and yesterday I set a 40:30 on my main timed loop.  This is a 10 mile mountain biking loop consisting of fire-roads, single track climbs, flowy descents and about 1200 feet of climbing.  By comparison, my best time on this loop at the peak of fitness last race season was 43:30.  It appears as though I’ve taken my peak from last season and made it a plateau to start off this season.  For someone like me this is all very exciting because I haven’t really started doing the stuff that makes me stronger, like intervals, more riding, really pushing it, etc. 

So I guess the main thing I’ve learned for me, is not to focus on riding volume or being as lean as possible, but instead on quality of overall fitness and training.  Being lean and having less upper body strength does not make me faster on the bike.  I’ve learned its ok to build, cross train, etc.  And the reality is its all adding up to better fitness and I’m guessing less susceptibility to injury. 

I guess we will see how I perform when the time comes.  First race is March 22nd.

Oh, and Yes, I really have my health and I really appreciate it!

My Mutant is Hiding

So just as a refresher for those of you new to my blog.  I have FAP, a genetic defect that causes colon cancer and can be passed on to my children.  I decided to get retested genetically last month in hopes that the new tests would be able to find a genetic defect in me.  If the tests did find one, then I could forgo putting my 12 year old daughter through a colonoscopy this year at the young age of 12.

Well, the results are in… No detectable mutation.  Apparantly I’m a very unique mutant.  I either have a Mosaic mutation, one which formed during growth in my mothers womb and isn’t present in my entire body or I have a yet to be detected mutation which science will hopefully find in the coming years since genetics is booming and on a huge growth curve.

So the plan?  Set up an appointment to see the best pediatric GI in the area for my daughter and decide if we should scope now or not.  Then possibly get retested in a year or so as the tests improve.

So not what I had hoped for but still could be a good side.  I didn’t test positive for the known APC dominate defect so I may have a recessive defect or a mosaic which is less likely to be passed on.

If we decide to scope this year, hopefully things will be easy for my daughter.  Luckily we have a CHOC hospital which is children only and has some amazing doctors out here where I live.

 

Against the Ropes…

A new friend of mine is in the struggle of her life.  She is fighting two different cancers, has had two surgeries in 2 months and just found out she may need another surgery.  The day after she found this out she was very down.  We chatted and I tried to bring up her spirits.  She started talking about Muhammad Ali and how he would be down, or appear that way to his opponent, against the ropes, tired, taking punch after punch, then just when his opponent least expected it, he would unleash all hell fury on his opponent.

My friend said she’s up against the ropes now and will remain that way for a few more days, then she plans to ditch the pity party and unleash all hell fury on the cancers that have brutely taken any aspect of normalness from her life.

So relating this to my own life, I myself was feeling a little less then strong this week.  A cold had set in and I just felt weak for the first time in a long time.  I was kind of against the ropes you could say.  I was really doubting myself.  Thinking maybe I won’t race this year.  I wasn’t riding strong.  I wasn’t playing volleyball well.  I just felt off.

Funny thing was, I was trying to motivate my friend to stay strong and fight and in turn she ended up motivating me.  I woke up this morning feeling like the cold was gone.  Got on the bike thinking of her and her struggle and my silly worries about not being fast.  Started peddling and the cadence just came.  Listening to my normal punk tunes over my head phones… things just fell into place.  The right songs, the right thoughts, in the zone so to speak, riders ahead in just the right places to pull me faster.  My riding ap reporting my splits over my head phones.  As the times came in I realized “wow, I’m setting record times here”.   Doing this in the off season is kind of unheard of.

My 2012 PR on this loop of 43:30.  I stomped that in 2013 at the peak of training season by putting down a 41:15.  Pretty fast!  Today I managed a 40:39!!  Doing this in the off season is… huge!

This time put me 7th out of 938 riders on my Stava Ap.  A top 10 on Strava is a very big deal, to anyone like me ;-).  The fastest rider on Strava is only 4 minutes ahead of me.   And I personally set 26 top 3 PR’s on this ride for various segments and 11 PR’s.  Maybe its time to train harder…

So I hope this display of effort and determination will in turn help my friend unleash all hell fury on her cancers!!

If interested you can check out the ride here:  My Ride

9 years ago

9 years ago today I was dragging myself out of bed, getting dressed and driving myself to my oncologist to get disconnected from my chemo pack for the last time.  6 months of Folfox had been given to me in hopes of mopping up any remaining cancer cells in my body.  I guess it worked.

Was the chemo hard?  Well, I worked through the whole thing, something not everyone can do but I guess I was lucky.  I think the chemo was only hard looking back after it was over.  When you’re in the middle of treatment you just plod along.  It was like having a mild flu every other week for the first three months.  But the flu got worse, other weird side affects popped up, and the porportion of good time versus bad shifted in the bad direction. 

But what choice did I had but to make the best of it and get thru it?  I had a beautiful 2 year old girl and my wife was pregnant with my son.  I really needed to stay alive!

When I was diagnosed with cancer, my wife and I were just about ready to start a home rennovation project to add a new room on to our house.  The cancer put the brakes on.  Did it make sense to rip our roof off and do all this construction at such an uncertain time?  My wife was pregnant with my son and we knew if we did not do it now, it likely would not happen.  I said F cancer, and we went on with the remodel.  And it worked out fine and even probably helped as a distraction.

I WAS NOT willing to let cancer change my plans.

So tomorrow night is New Years and I may just be celebrating a little more than the next guy.  Do you blame me?  HAPPY NEW YEAR EVERYONE!!!

47 Years Cancer Free…

 

Yep, add it up, 8 survivors with a combined survivorship of 47 years. 

This was a photo from a So Cal Colon Cancer get together party I had last night.  It was an awesome time sharing stories, getting to know spouses and friends and just hanging out.  Kind of amazing when you think about it that these amazing 8 individuals were given a second chance and have made great use of those 47 years that were given to them.  All of these survivors have put themselves out there to raise awareness and support others.  And the vibe of having such an amazing group together in one spot is hard to explain. 

For someone like me, coming up on 9.5 years cancer free, you might think I am so far removed from the cancer at this point that I probably don’t need these get togethers.  I’ve probably moved on, so to speak, put it behind me.  I gave this a lot of thought last night after everyone left.  The reality is different for me.

Getting diagnosed with cancer wakes you up and when you realize you are given a second chance you sieze the moment and enjoy every minute.  Unfortuneately, that feeling can wear off after 9.5 years and one can kind of fall back into mundane day to day life.  Well, for me, these get togethers are a way of reliving the cancer experience by telling my own story and listening to others and regaining that appreciation for life, gaining and sharing strength and just realizing how lucky we all are to be alive.  And it was awesome that even the spouses and friends had so much to share! 

So while some may think going out of my way and throwing a party for a bunch of survivors is a selfless act, the reality is its selfish too and in some respect I’m doing it for myself because it really helps me to refocus and remember what’s important in life.  And it helps me to stay strong and it helps give me the strength to reach out and help other newly diagnosed people that so need that light at the end of the tunnel.

Thank you Libby, Karen, Marty, Emily, Debbie, Charity, and Carolyn!!  You guys rock!

Finding the Mutant within

When I discovered I had FAP and Colon Cancer back in 2004, I was genetically tested to look for the defect.  Discovering a known defect would allow my children to get a simple repeat blood test to determine if they had inherited this gene defect from me.  Well, the test came back with no known defect.  9 years later and my daughter is about to turn 12.  This is the accepted age to begin scoping children with FAP and since she is an unknown, we decided we would scope her at 12.

Because subjecting my daughter to a colonoscopy at this young age is not something I really want to do, I went to talk to a genetic counselor on Friday to see about being retested.  She was awesome and had lots of information for me that made me hopeful we could find my genetic defect this time.

In 2004, I was tested for the common APC and MYH mutations but I did not have full gene sequencing of the MYH.  Something that was dificult then but has become easier as processes have improved.  She told me that many of the previously undetectable defects are getting discovered as MYH defects.  I had read that 25% of FAP cases are new mutations, or not inherited from the parents.  These numbers have updated to a much smaller number and many of the cases are being caused by recessive MYH mutations which about 2% of the population carry.

What does it mean if my defect is recessive?  It means my children would only inherite full FAP if my wife is a carrier of the MYH mutation.  But if my wife is not a carrier they could still be a carrier of the gene and if later in life their spouse were a carrier of the same defect then their children could get FAP.  So kind of complicated but I’ll take this over full dominant FAP where my children would have a 50% chance of inheriting it.

This could also explain why my sister has shown a couple polyps in her 40’s.  She may have only a single MYH mutation, not a double pair like me.  If she does then this points back to my parents. 

Polyps are formed because FAP’ers can’t produce a protein that stops them from forming.  With a double pair, we are severly low on this protein but with just a single MYH defect I guess there is still a chance that protein production is reduced which might explain my sister.

So this was exciting news for me and my family.  I’m going forward with getting the testing done in hopes that Skyler can forgo a colonoscopy next year.  As a father that never wanted any of this for his children I really look forward to the possible day when I will know my children do not have to go thru any of this FAP crap or worst case find out they do and be able to plan for it.

 

Adversity comes in many forms…

Today I went riding with a buddy of mine.  We raced together in 2012 and road together a lot.  We challenged each other but in a good way.  He’s just coming back from a knee surgery, blood clot and almost dying.  He didn’t ride for almost 6 months.  So now he’s back on the bike which is great for him.  And is he taking it easy?  Well, we just rode 25 miles and climbed like 4000 feet.  BIG ride.  This guy could have just took it easy and not started pushing so hard again but he didn’t.  All he cares about is overcoming this set back and getting back to where he was and by the way he was riding, he’s off to a good start.

I’m coming up on my 9 year anniversary from my cancer diagnosis.  To me, things are becoming a distant memory.  I’m so very lucky to have the health I currently have but at times its easy to forget it.  Each year I’m getting older but I’m getting stronger and faster.  I’m reminded I should not forget how lucky I am with my health by the act of reaching out to others and listening to their struggles.  And some are in the middle of some big battles right now.

Sometimes I feel guilty for being so healthy…. Survivors guilt they call it.  But then I look at it another way.  If I was sick, I would love to hear of others who had overcome the crap I was going thru.  And that’s the biggest reason I write this blog.  To hopefully give hope to others that aren’t so lucky and need a little “light at the end of the tunnel”.

So… winter training.  Not as much riding.  Down from 4 times per week to about 2.  I’ve been mixxing it up, playing sand volleyball a couple times a week.  Hoping to build all around strength and core.  And I’ve been getting stronger.  2 days of riding, 2 days of volleyball (usually about 3 hrs each day) and then I supplement with one day on the stairmaster and a couple days of light lifting.  Oh… and I’m doing the 30 day plank challenge.  Just got to day 16 today with a 2 minute plank.  I collaspe at 2:01.  Tomorrow will be interesting as it goes up to 2:30.

So the holiday season just seems like an amazing time of year to be grateful that I have the health to be active 6 days a week!

I’m tossing around ideas for next years race season.  I think the most likely path I want to take is to do 50 mile mountain bike races.  I can take my current fitness and just start adding volume and endurance.  50 miles on a mountain bike is tough.  Part of me wants to not do this because it will be hard, or I might not win… but another part is telling me I have to do this.  So we will see.

Unexplained anemia and bike racing don’t mix…

It started back in June of 2011.  Solid black stools for two weeks.  A race was coming up and I could feel my body slowing down, throttling back.  I went to the doctor and he confirmed it.  I had a hemoglobin of 12.3 (14+ is normal for men).  Scopes and a camera pill showed nothing.  the anemia went away.  Fast forward to Summer 2012 and I’m anemic again.  Black stools initially but then they stop but the anemia lingers.  I start oral iron which doesn’t seem to help.  Turns  out me ferriton is low too which means my iron stores in my bone marrow are depleted.

Come early 2013 and my doctor is recommending iron infusions.  I’m eager to start racing again as I took off 2012 so I decide to go for it even though there are risks like anaphylactic shock (yikes).  Two weeks later my anemia is gone and the infusions are a success.  Just in time to race.  I pull off a respectable 2nd.

Fast forward to now.  The blood work has held.  The theory is that I had bleeding episodes and my rerouted duodenum causes the food to bypass the upper duodenum where iron is absorbed.  I was so depleted that I just couldn’t absorb enough to fill my reserves back up.  So I enjoyed a great season of racing (more on that in another post) and I continue to set climbing personal records.

So I see my doctor tomorrow for bloodwork but I’m not worried at all because I’ve been really fast and strong… and that’s not possible without all my hemoglobin.  So still a mystery and if the anemia had continued or if it comes back I would consider doing a balloon endoscopy where they can inch their way through the small intestine and visualize the whole thing but for now I’m good!

I crashed today!

If you haven’t already figured it out, I ride a lot.  I climb about 250,000 feet on my bike each year, all in the dirt.  Well, here in Souther California it had been raining for a few days but I woke to sunshine, hoped on me bike and went riding.  My plan was to do a local climb which is about 800 feet and repeat it again.  I finished the first climb strong and was heading back down.  There is a little paved section and I went thru the turn an little too fast and the rear of the bike slid out and I went down.  Not a fast crash but I hit hard on my right side hip, arm and pinky.

I got up and thought “I need to head home now as I’m hurt”.  So I started riding down.  On the way down, I started thinking, why quite now.  I got to the bottom and turned around and started climbing working through the pain.  I think the adrenaline took over somehow because on that second climb I did a 14:35.  My all time record was 14:55 and if was to ever beat that time it would usually be the first time up not the second.

The whole time I just kept relating this to stuff everyone could encounter in life.  Whether it’s a cancer diagnosis, a fall like this, a job set back, whatever.  Don’t give up, keep going.  You have no choice!  You never know, you may just surprise yourself like I did.

Well, I got home, got off the bike and took a showel and noticed the 5″ hematoma on my hip protruding about 1 inch out farther then normal.  Oh well, a little setback but it will heal…

Oh, and I almost forgot.  Got to the top of the climb the second time and snapped these beautiful photos of the Laguna Beach coastline.  The view alone made it all worth it.