A Little Philosophy. A Little Pragmatism.

Living with Cystic Fibrosis is a bit like having a monkey on your back. Those long arms draped around your shoulders and neck. He's a wiley old devil; helping himself to your lunch, always making noise, sometimes tugging on your hair or poking you in the eye. As you age together he demands more attention and time to appease. And he just keeps putting on weight - even after you've stopped growing. Over time he gets heavy and threatens to choke you off.

What's worse, sometimes the little punk starts talking smack. Tries to get in your head. Play on your insecurities telling you what's the point of working hard, you won't even get the chance to do anything important. You might as well just pack it in he says. Most of the time you ignore him, but other times you can't help but ponder these choice words. Its inevitable. The monkey affects how you feel and how you think.

And unlike most monkeys that come to rest on your back, this is not one you can ever shake off. You are the monkey, and the monkey is you.

Such is the dynamic of living with chronic disease. You must learn to live with the beast that is inseparable from you. The best strategy is to get to know the thing and accept it as part of who you are. Pay close attention to its personality - its temperament and particularities. Know the enemy and know the self. Do not provoke, but do not be afraid to fight back when provoked. The most efficient evolutionary strategy: tit for tat.

All that is grand. Important for placing one's existence in context. Useful for life's reflective moments. But what about the waking in the middle of the night alone, coughing blood, on the verge of medical bankruptcy moments? All the mental clarity of all the Buddhas isn't enough to help get you back on your game during times like these - experiences that are all too familiar among those living with disease.

These difficult episodes call for pragmatism and an effective response. All the practical wisdom that I have accumulated in 30 years of living with disease distills down to the following: keep going.

Momentum is the product of mass and velocity. One must remain kinetic in order to sustain his or her functionality. Hesitation or delay may be met with grave consequences. You must keep going.

Having a tough day? Health getting you down? Unsure about the future? Feeling like you can't get the motor running? Do your meds and get moving. The only option is to power through, get past the tough times, and come out on the other side in a better place as a stronger individual.

This resolve requires both a mental and physical response. There is broad consensus that physical exercise is essential in combating CF. In other words, get out there and run around. Of course, the level of intensity will vary depending on the severity of the disease, but by making exercise in some form a routine part of your life you can start to shut that monkey up.

I began training for the New York City marathon in April in the hopes that doing so would help to quiet my own monkey. I have been very fortunate in that my hospitalizations have been few and far between over the years. But in the winter and early spring of this year I was beginning to feel the weight of CF and considering a hospital stay for IV antibiotics. The average day was filled with more coughing and my PFTs were down at the doctor's office. The milestone birthday of 30 had me thinking on a time frame usually reserved for life's big decisions.  There I was, three decades in, reflecting on how fortunate I had been to that point, but wanting so much more from life in the years to come. If I was to prevent CF from gaining ground - prevent that monkey from bulking up - I was going to have to step up my efforts in combating the disease.

The most rewarding part of training thus far is observing progress. Not just in an anecdotal way (less coughing, sleeping better), but by meticulous logging of miles run and pace I have been able to observe my capacity for exercise increase significantly along the way.  I'm currently running approximately 20 miles per week to go along with additional cross training such as biking and surfing. My average per mile pace has fallen by more than one minute, this despite the fact that my runs are now much longer than when I started.

The marathon is about two months away. Twenty miles per week isn't such a bad place to be at this point, but its not going to cut the mustard for a run that requires you run 26 in a morning. The increased training to come will be a challenge, but it will also be an opportunity. An opportunity to earn a banana or two with every double digit mileage run that I record in my spreadsheet. Earn those bananas and shut that monkey up. An opportunity amid the pain of exertion to practice the mantra of successful CF management- to just keep going.

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Life is Good.

In life, it is important to work hard.  I ran 8 miles today at a a 9:07 pace. That's a sub-four hour marathon pace folks. And because Sarah said this past weekend that I was bony, I did 120 push-ups.

In life, it is also important to have fun.  Sarah and I are braving the traffic and headed to the Cape later today to see the Sierra Leone Refugee All Stars at the one and only Beachcomber.  One of my all-time favorite bands; a band that reminds me of all the beautiful things of Cape Cod that I hold so dear.

Life is good.  Get after it and keep after it.

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Achieving My Target Weight.

This is a picture of me from this passed New Year's Eve at Okemo.  If you look real hard you can see my snowboard.  As you can see I was quite overweight only a few months ago.  Running has helped me slim down and achieve my target weight.  Thanks running.

And lastly, what you know about my panda mittens Boyeeeee??!!

A Picture Says A Thousand Words.

This is me finishing a 4 mile race on Sunday.  Ouch.  Imagine what I'm going to look like after 26 miles...

When Considering a Goal.

As training continues I'm beginning to think more about setting a goal time in which to complete the marathon.  I'm no Meb, so its something I need to be realistic about.  In my heart of hearts I want to finish in a time that starts with a "3."  But as I track my progress and I continue to run 4,6, or 10 miles and my pace is consistently in the mid- to high-9 minutes, I begin to question how realistic that may be.

In order to run a sub-four hour marathon, one has to run under a 9 minute 10 second mile.  From where I sit now, this seems like a lofty goal, but when I look back at previous times I have some hope. In 2010 I ran a half-marathon in 1:54:34.  That's a pace of 8:44.  I could add 20 seconds to that pace and run a sub-four marathon comfortably.  Trouble is getting back there...

Athlinks is a great website I used regularly when I was running with greater frequency (2009-2011).  It allows you to claim and log your personal times from an enormous database of online race results. You can view my results on the webpage. Some of my better times include a 7:28 5k in Montclair and a 7:33 showing at the Ashenfleter 8k in Glen Ridge.  I am certain that I couldn't post these times now (I was in pretty damn good shape between running and Jiu Jitsu back then), but I am also confident that given enough effort I could get back there.

All this factors in to if and when to draw a line in the sand and declare a goal for a marathon finish. I am not ready to do so yet, but I do believe in setting discrete goals for myself and therefore I likely will do so. One of my greatest fears is being average.  Thus I will almost certainly choose a time that is better than the average (mean, median?). From some (kind of sketchy) information I found online, it appears to be about 4:08 for my age class at the NYC marathon. We'll see.

I have a lot of running yet to do and thus a lot of time to meditate on just such a quandary. I'll keep you posted.

Speaking of goals, in my last post I stated that I would love to reach $5,000 before the end of July. Check. Thanks to a slew of new donations we are now flirting with $6,000 raised and currently the Team Boomer fundraiser leader out of 39 individuals.  Thank you so much for your support. Please continue to spread the word.

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Page Views: 1000. Miles last week: 0.

I was a bum last week.  Apparently the obscene amount of seafood that Sarah and I gorged on in Maine was enough to knock me off my wave from the week prior in which I achieved a new high mileage mark.  I was just simply unmotivated and did not want to run.  Team Boomer had its first conference call last week and one of the things that Coach GP (he's the official coach for all those signed up for the team) said resonated with me.  He said that a greater proportion of those who set out to run a marathon don't make it to the starting line compared to those who make it to the starting line but don't make it to the finish line. After last week I believe him.  It's perfectly clear to me now that the real challenge of a marathon takes place in the weeks and months prior to race day.  And so much of it is psychological, not physical. So admittedly, I struggled a bit. That's the bad news.

But there is good news too.  I put the unproductive week behind me with a 35 mile bike ride on Sunday. This spurred on by my friend Steve. We took a ride to Willamantic, Connecticut, rode our bikes for 3.5 hours and then gorged on nachos, burgers, and beers at a crowded brew pub set in a beautiful old post office.  It was a great day and an excellent, sustained workout.  My legs were a little sore the next day - that's a good thing. I hadn't been on my bike for some time and the ride served as a great reminder as to the intensity and just plain fun of a good bike ride.

And there's more good news - I'm headed out now to get a few miles under my belt before the sun sets. Also this blog has reached a milestone of sorts by recording its 1000th view as of today.  Not bad.  If you've been thinking about sharing with friends, please do so.

Lastly, I caught a delicious bass this morning from a kayak.  Seriously, I ate it.  With taco seasoning.  It was delicious.  Does fishing count as cross training too?

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Fundraising update: current total raised is $4,190.  Wouldn't it be nice to get to $5,000 before the end of the month?

Feelin' Good.

So the 5k that Sarah and I thought was taking place this morning, actually took place yesterday.  So, yeah, apparently we didn't quite pay close enough attention to details on that one.  Nonetheless, while I didn't get to push myself against the official clock of a road race, I did surpass my goal of running 5 consecutive 5ks this week. My normal pace is somewhere just north of 9 minutes, but when I'm feeling good and its not too hot (damn this heat slows you down), I've run some consecutive sub-8 minute miles. Weekly total miles came to 17.15.  That represents a new weekly high and its also the first time I've run for five consecutive days.

I'm just about where I wanted to be at this point. That's good. I think Team Boomer is going to begin reaching out to runners and provide access to their coach beginning next week. I'm looking forward to having some additional input.

This week was auspicious with respect to health news as well.  I made the early trip up to Boston to see my CF doctor at Mass General Hospital on Tuesday.  Its only the third or fourth time I've visited them, but I've already established an excellent level of cooperation with and respect for the team.  I met a new member of the team this week, Mathew - a physical therapist, who specializes in working with folks with CF.  He was an outgoing, well spoken guy and explained to me that I'd be doing an exercise test.  Essentially throwing me on an increasingly challenging treadmill and monitoring my physiological vitals.  Apparently all this exercise is paying off because (I don't think this was hyperbole) when we finished and he took a look at the numbers he told me that I was probably in the top 1% of patients with CF with respect to cardiovascular function. He was especially thrilled with how quickly I recovered (pulse rate, oxygen saturation, blood pressure). A veteran of 8 Boston Marathons himself, he had encouraging words for my efforts and gave me a great deal of confidence that I would actually be able to do this. 

From here it was over to the clinic office where I performed my obligatory pulmonary function test (PFT). A PFT is a hallmark of all CF doctor visits and consists, essentially, of blowing as hard as you can into a long tube attached to a machine that monitors things like volume and rate of air flow. PFTs produce a metric that nearly all CF patients (and their health care team) place above all others when monitoring the progress of the disease - the FEV1/FVC.  FEV1 stands for forced expiratory volume in one second - the absolute maximum volume of air you can blow out of your lungs in one second. FVC stands for forced vital capacity - the total amount of air you can forcibly blow out in one breath (measured during the same hulking gasp and exhale as FEV1). The ratio you produce is compared to a regression curve of what is considered normal for one's age and body mass index and reported as a percent.  What is considered normal depends on the patient and who you ask, but anything below a 70% is usually considered problematic for someone with CF (at least that's been my personal perception). My last time at the doctor's (March) I had blown the lowest FEV1/FVC of my life (~63%). Not a good thing, but not terribly shocking as the disease progresses with age.  This time around I had some additional, albeit tempered, good results.  I blew a 68% (pre-albuterol) and a 70% post-albuterol.  This is a step in the right direction, but certainly something I look to improve upon as I continue training.

So with the completion of this morning's (almost) 4-miler, a midst this relentless heat, I'm feeling good. And now a little celebration. Sarah and I are hopping in the car and headed north along the coast to Portland, Maine. Lobster anyone?

Road-trippin'...

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