Ten Thousand Tons

“And on the worst days

When it feels like life weighs ten thousand tons

She's got her cowboy boots and car keys on the bedstand

So she can always run

She can get up, shower, and in half an hour she'll be gone”

As some of you know, I just finished attending the Teradata Partners conference in Anaheim. I call it spring break for nerds but it's always a great time of learning new things and re-connecting with colleagues from across my almost 20 years in the data and analytics field.  Oh and there's a fair amount of fun. I've been on the planning committee for the conference for the last 4 years and this was my last conference as a committee member. It was bittersweet. 

Last year I was the president so I gave a 20-minute keynote in Monday's general session and was emcee for the closing general session on Wednesday. The highlights included telling the story of some good work, meeting football commentator Herm Edwards, and wearing a yellow spandex Kill Bill suit and, later, my cycling kit in front of 3,000 of my closest friends.  I had numerous people stop me this year to tell me how much they enjoyed my time on the stage last year. (I just realized I never wrote about that here...sorry.)

While I wasn't on the big stage this year, I did present with Dean Furness, a colleague who works at Wells Fargo in Des Moines. Dean and I met when I went to speak at a professional development day at Wells Fargo in December 2011. He also presented and we became fast friends at a dinner the night before.  At the time, he was working with a former colleague and volleyball partner, and friend David Brenner.  We talked about the unique experience of being David's friend and colleague.  :)

Seven days after we met, Dean was in an accident at his family farm—an 1,800-pound hay bale rolled off his front loader and crushed him underneath.  It severed his spine and he’s now paralyzed from the chest down.  But, through a lot of faith, support and hard work, he got back to work faster than anyone predicted--including the Social Security admin who came after him to return his disability payments because he obviously couldn’t have been disabled since he came back so quickly.  Ten months later, he presented at the Partners conference in October 2012 and I had the pleasure of introducing him.

Now, those of you who have been around a while may recognize that October 2012 was when I first realized I was sick.  While packing for the Teradata conference that year, I had to go buy a new pair of pants because my jeans wouldn’t button, even though I hadn’t gained weight.  And some of the pictures from the conference show the slight signs of my facial edema.  Hmmmm?

Well, we know how that turned out.  Dean’s triumphant return coincided with the beginning of my decline but, like Dean, through faith, support and hard work I’ve made it back, too.  So Dean and I decided to do a session that talked about how people can use business measurement constructs to help hem “up their average.”  The title was “Curve Busters: Looking for a Dare to be Great Situation.”

One thing Dean noted, as he rolled across the stage in his wheelchair, was that people look at him and automatically know he’s been permanently affected by his experience.  It’s not obvious when someone looks at me.  But I have been permanently affected, too.  And lately, it’s been really weighing on me creating this grating, and at times overwhelming, level of frustration.  I just didn’t know what was frustrating me but it was a consistent feeling. 

On Thursday, after the conference was over, I went up to LA and had dinner with some dear friends.  They’re facing their own health challenges that are impacting their ability to have a life that is as fulfilling as they’d like.  We talked about the struggle of keeping it together through the good days and the bad days.

After dinner, I went, by myself, to see one of my new favorite performers, Frank Turner at a small theater with a capacity of about 1,500 people.  It was a great show and a great crowd and well worth the 45-minute drive back to Anaheim at 11:30.  The show was a big sing along and as he played the song “I Am Disappeared” (which I hadn’t listened to before), snippets of the lyrics just struck me and I had moment of catharsis and epiphany.

“Of people wrapped up tight in the things that will kill them  (my disease)

Of being trapped in a lift plunging straight to the bottom (if I relapse)

Of open seas and ways of life we've forgotten (of being able to perform mentally and physically, and not worrying about the disease and it's complications)

I keep having dreams” (of the time before I was sick)

“She woke up screaming in the middle of the night

Terrified of her own insides” (of the chromosomal defect that I have that is the worst factor for long-term survival)

“And on the worst days

When it feels like life weighs ten thousand tons

She's got her cowboy boots and car keys on the bedstand

So she can always run

She can get up, shower, and in half an hour she'll be gone”

“I keep having dreams of things I need to do, And waking up but not following through” (I am so distracted, I think that’s why I stay busy doing so many things)

“And come morning

I am disappeared

Just an imprint on the bedsheets

I'm by the roadside with my thumb out”

http://youtu.be/6t2Hz6KL3uE

I’ve had many days where I felt like I wanted to run away, just get in the car and drive far, far away. There are days when the pressure of living with this disease, dealing with known and possible organ impact, maintaining a career, trying to have a normal life, dealing with challenges at work blah, blah, blah are like a crushing weight on me.  It’s not a lot of overwhelming, attention-grabbing thoughts or even an acute emotional reaction.  Its just there are times where I feel like I’m trudging along wearing a 100-pound backpack.  Maybe not ten thousand tons, not debilitating, just a constant heavy presence.

I feel alone so much of the time, even when I’m around friends, family and colleagues.  It struck me that it wasn't a coincidence that I had this catharsis alone in the middle of a jam packed room.  I’m alone in this struggle no matter how many people I know that love me and care about me.  And it’s made me hyper-sensitive to anything that I think contributes to that sense of separation.  Honestly, there are fleeting moments when I wonder why I'm alive, is what I'm living now worth all the work to get it and, if I relapse, worth all the future work to keep it.  I talk myself out of it pretty quickly, but it happens occasionally.

When I feel like I want to run away, I realize that there’s nowhere to run to get away from this.  Dealing with this disease is the definition of a “fact of life” for me…barring some significant and unexpected medical advances,  I will have to deal with this as long as I’m alive.

From what I read, what I’m dealing with isn’t uncommon for cancer survivors.  I read an article in Psychology Today entitled “The New Cancer Survivors”  noted this—

And as more and more people are living with cancer as a chronic manageable condition, often outlasting the crushing prognosis that the disease will cut their life short, the psychological nature of their situation becomes clearer. Theirs is a hyper-real, intensified state of existence in the liminal space between being terminal and cured. In many cases, after believing that their death was imminent and coming to terms with that fact in whatever way they could, they find themselves instead navigating a new and wildly uncharted reality. Their lives, unnervingly interrupted, are resumed in a form that is somewhat familiar but permanently altered.

So I continue on, permanently altered, navigating this uncharted reality.  I have come to terms with death.  I'm not afraid for me and, as much as I want to be around for Al, Amy, Claire and all my other friends and loved ones, I trust that God will provide for them what I might have.  It's not a fear of death that weighs on me, but a nagging question of what should my life look like and how do I get past this sense of isolation?  I think that's what drives my desire to run away..."If I'm going to feel alone, well then I'll just BE alone."

But, as my buddy Frank Turner says in one of my favorite songs “We can get better, because we’re not dead yet.”  So, I'm not dead...I'll try to get better.

Thanks, Frank!

"I Am Disappeared"

I keep having dreams

Of pioneers and pirate ships and Bob Dylan

Of people wrapped up tight in the things that will kill them

Of being trapped in a lift plunging straight to the bottom

Of open seas and ways of life we've forgotten

I keep having dreams

Amy worked in a bar in Exeter

I went back to her house and I slept beside her

She woke up screaming in the middle of the night

Terrified of her own insides

Dreams of pirate ships and Patty Hearst

Breaking through a life over-rehearsed

She can't remember which came first

The house, the home, or the terrible thirst

She keeps having dreams

And on the worst days

When it feels like life weighs ten thousand tons

She's got her cowboy boots and car keys on the bedstand

So she can always run

She can get up, shower, and in half an hour she'll be gone

I keep having dreams of things I need to do

And waking up but not following through

But it feels like I haven't slept at all

When I wake to a silence and she's facing the wall

Posters of Dylan and of Hemingway

An antique compass for a sailor's escape

She says you just can't live this way

And I close my eyes and I never say

I'm still having dreams

And on the worst days

When it feels like life weighs ten thousand tons

I sleep with my passport

One eye on the back door

So I can always run

I can get up, shower, and in half an hour I'll be gone

And come morning

I am disappeared

Just an imprint on the bedsheets

I'm by the roadside with my thumb out

A car pulls up, and Bob's driving

So I climb in

We don't say a word

As we pull off into the sunrise

And these rivers of tarmac are like arteries across the country

We are blood cells alive in the bloodstream

The beating heart of the country

We are electric pulses

In the pathways of the sleeping soul of the country

We are electric pulses

In the pathways of the sleeping soul of the country

We are electric pulses

The sleeping soul of the country

The sleeping soul of the country

The sleeping soul of the country

Kath's Cath Update

I've had lots of discussions with my Medical Advisory Board (MAB) about the need to have the cardiac catheterization to evaluate my possible Constrictive Pericarditis.  Remember, my cardiologist recommended this test so that he could either rule out the condition or give him a better set of data from which to manage the condition over time.  It would not result in any treatment or recommended lifestyle change for me.

My MAB consists of:

• Husband, ICU Nurse
• Daughter, Nurse Practitioner
• Brother in law, Internal Medicine Physician
• Oncologist, Oncologist :)
• Oncologist's Nurse Practitioner (you get the drift)
• Sisters in law, 3 nurses including a CVICU nurse

After lots of discussion, I've decided not to have the cath done.  It's an expensive, invasive and risky procedure and the results wouldn't change anything.  As good ole Dr. Tom Bishop would say, you collect data so it can serve as a rational basis for action.

They're going to monitor my heart via MRI every 12 months and IF they notice a change in the structure, then have a cath and determine if surgery is needed.  That surgery would require cutting a "window" in my pericardium so, needless to day, I'd prefer to delay that as long as possible.

Bottom line, no cath for Kath.  In the meantime, he said I can keep doing what I'm doing.  He said the condition is "self-limiting" which means if I stress my heart too much, I just faint.  That's not bad.  My stupid human trick I learned when recovering from my stem cll transplant is how to recognize I'm starting to faint and prevent it.  I did it on the Millenium Force rollercoaster, I'm sure I can do it on the bike or in my workout classes.

All that other stuff I listed in my last post, I'm going to get busy doing THAT!

Just when you thought it was safe....

So, as you can tell from my various activities--riding strong in Pelotonia, hiking  and white water rafting in the Cascades, racing in cyclocross--my health has been pretty good lately.  But....there's been this issue that has caused me some concern and been a source of worry for my husband, who's an ICU nurse.  When I exercise, my heart rate has been about 20 beats per minute higher on average and at max compared to when I got sick.  On long, hard bike rides, I've had extended periods of time during which my heart rate was above my max HR.  And, I've had some near fainting spells during particularly difficult times.

I did the responsible thing (shocking, yes?) and consulted with my hematologist.  Yes, it seems odd to consult with a hematologist on a cardiac issue but I assume all issues are due to the effects of the amyloidosis or treatment so I start with Dr. Efebera.  She referred me to a cardiologist at Ohio State Ragavendra Baliga, MD.  I met with him September 17 and, like every other physician I've encountered at Ohio State, I was impressed with his knowledge, friendliness and balanced perspective.  I loved his icebreaker question.  He asked me, "What are you famous for?"  I answered, "Kicking Amyloidosis' butt and being a data geek."  (Confirmation came that same week when Pelotonia tweeted out a link to my story in The James magazine-- https://twitter.com/Pelotonia/status/647018183652737024 and Teradata Partners posted an interview with me talking about how we select sessions for the conference-- http://www.teradata-partners.com/blog/post/global-compelling-stories-value ) After reviewing my history, he ordered some tests--a cardiac MRI and a VO2 stress test.

I've had a cardiac MRI before.  You get an IV to deliver the contrast, you get loaded into the MRI machine and you spend about an hour following instructions of when to breathe and when not to, and listening to noises that sound to me what an apoclyptic robot war would sound like.  The VO2 stress test is the usual stress test--walking then running on a treadmill with ever increasing pace and incline--WITH a mask over your face and your nose pinched shut so they can measure how your body uses oxygen.

First, the good news....the VO2 test shows that I'm in pretty good shape.  I performed at 138% of what is expected for someone of my age and gender.  Dr. Baliga says he never sees anyone over 100%...well, he's a cardiologist treating advanced and complex cases.  Logic says his patient population won't be filled with folks who have high cardiovascular function.  He told me my VO2 max was 36...and then he told me that Michael Phelps' was 71.  My rose-colored glasses helped me see that halfway to Michael Phelps for a 53-year-old woman wasn't too bad.

The bad news is that the MRI showed some thickening of the pericardium, that's the fibrous sac that contains the heart.  It also showed some enlargement of the atria, the top chambers of the heart.  These are not the chambers that pump the blood out, they're the ones that receive blood from the body and the lungs.  Their walls are thinner than the lower chambers, the ventricles, that do the pumping.  

The MRI report said there was evidence of "constrictive physiology" which means the thickened pericardium, the sac that holds the heart, could be pressing in on the heart and constricting it's function.  Like a balloon, when you squeeze on one part, it causes another part to enlarge.  That may be why my atria are enlarged.

So, Dr. Baliga wants me to undergo a cardiac catheterization to measure the pressure in my chambers....to know whether my heart is constricted.  Initially, I wasn't a big fan of the idea.  When I asked my standard question regarding any major test, "How will the results change my treatment or management of my disease?"  The answer, as so many things when managing a complex disease, wasn't as straightforward as I would have liked.  Bottom line is, it could rule out this constrictive physiology and show the heart isn't constricted and this isn't something we need to monitor and manage over time.  Or it could show that this is a problem that we need to monitor and this would give us a very thorough set of baseline data so we could pick up changes and know when to start treating it....through surgery by cutting a window in the pericardium.  Eeek! 

Dr. Baliga called Amyloidosis an outlier disease because there's not a lot of proven treatment approaches once you get beyond the basics of the disease.  And he said I'm an outlier within the Amyloidosis patient population so there's no literature on how to deal with my situation...everything is anecdotal.  The good thing is, he trained at Boston which is one of the centers of excellence in Amyloidosis and has a colleague there who he will consult on my case after he gets the results from the catheterization.  

As I was texting with my nurse practitioner Tammy about whether to have the cath, she strongly recommended it saying, "This is your heart, we don't want it broken."  I said, "A ruptured atrium sounds kinda serious" and she said, in her usual understated manner, "Ya think?"

So, on October 28, I'll have a cardiac catheterization done by a cardiologist specifically chosen by Dr. Baliga because, as his nurse comfortingly (?) noted, he has a lot of experience with patients with heart failure.  And then we'll see if I have an additional problem to monitor or not.  I was thinking about how well things had been going over the last year and it made me think of the tag line from Jaws 2....

But, I'm going to "stay in the water."  Between now and then I have two cyclocross races, a trip to Nashville for an Amyloidosis Gala and patient meeting, a trip to Anaheim for the Teradata Partners conference including a doing a presentation called "Curve Busters: Looking for a 'Dare to Be Great' Situation" (with my friend Dean Furness who became a paraplegic from a farm accident a year before I was diagnosed), a Frank Turner concert in LA the night the conference ends and dinner with my friends Reid and Bethy, a party with my Pelotonia team, leading my church's pledge drive as chair of the Stewardship Committee, organizing weekend food kits my church is providing for 75 students on free lunch at a nearby elementary, starting a new mentoring relationship with a 6th grader at Champion Middle School, watching some Gator football, doing some exercising and yoga, keeping the day job, wife-ing a little for Al and Mom-ing a little for Claire.  

No time to worry.  God has given me the grace to deal with what is, and not worry about what might be.  

Keep on keepin' on my friends!!  

Pelotonia Abridged Version

I'm really sorry I haven't posted a retrospective on my Pelotonia ride here.  I've been busy writing thank you notes to all my awesome donors who helped me raise more than $8,000 in pursuit of our goal to end cancer.  

Quick notes: I rode strong.  The 1,100 miles and 17,000 feet of climbing that went into my training paid off.  I finished about an hour earlier than last year both days and kept up with folks who left me in the dust last year.  It sure was fun on Sunday to announce "on your left" (the warning cyclists give when passing) to so many riders on the hills that fill the first 30 miles.

Here's a link to a video I made if you want to see the best 10 minutes of about 12 hours of cycling. https://vimeo.com/136087729

Here's a photo that wasn't in the paper but made it onto the blog of the photo editor of the local newspaper.  See #8.  http://www.dispatch.com/content/photo-blog/2015/08/best-pelotonia-photos.html

And here's my Facebook photo album.  You can see it even if you're not on Facebook.
https://www.facebook.com/media/set/?set=a.10107329900861731.1073741853.2027396&type=1&l=f7a79f991e

More later.  Thanks for all the love and support!  One Goal people. Let's end this thing!

What Could Have Been

As many of you know, I'm a big fan of a music artist named Jason Isbell.  His album, Southeastern, was released about the time I got out of the hospital in 2013 following my stem cell transplant.  My son in law, Sean, told me about it and I was hooked from the first playing.  Since then, I've listened to Southeastern about 98,736,434 times and his other albums about 82,347 times.  He grew up in Alabama and his Southern aesthetic really resonates with me, he's a great song writer (John Mayer called him the greatest lyricist of our generation) and he's a great guitar player.  Plus, he's had more than his fair share of struggles.

I saw him perform at the legendary Ryman Auditorium in Nashville last October and it was the first time he performed Southeastern in its entirety...coincidence? I think not.  I also saw him in Columbus in February.

He released a new album last month and I've been dutifully listening to it.  There are many, many songs that I love but one in particular, at this time, in my mood, is really effecting me.  

This time of year always reminds me of my mom.  Her birthday is July 9 and the date of her death is September 8.  So, I think of her often in August.  He has a song called "Hudson Commodore" that tells the story of a southern woman who dreams of a better life.  

The woman in the song sounds really strong and independent and is able to build a life for herself and her children.

"Time between the glory days and the golden years  

She did the work of 20 able men  

Sent Tommy off to school to be an engineer 

And Sarah went to try out all the sins  

She took to taking tea out in the Belvedere  

Bourbon in the evenings by the fire  

As if the Great Depression never made it here  

As if she had defeated her desire 

She just wanted to ride in a Delahaye 135  

She just wanted to ride in a Hudson Commodore  

No need to worry anymore"

This is the story of what my mom's life could have been like if she had grown up in a different environment.  Her dad scraped an existence out of carpet and tile work in Jacksonville in the 30s and then Tallahassee from the 40s through the 70s.  My mom, who was born in 1930, would go to the movies and watch the glamorous lifestyles depicted in those movies and dream of something better.

This is a photo of the car that Isbell sings about in the song that my mom might have seen when she 10 years old.  How glamorous is that to the daughter of a blue collar worker struggling to provide for his family?

Here's a picture of her sometime around 1950.  Can't you see her in some version of that car?

Unfortunately, my mom's mom never encouraged her to build that life for herself.  She was in the age when a man provided that for you.  Plus, my grandmother was so fearful and insecure and that attitude permeated my mom.  A woman couldn't provide a good life for herself.  My mom was so smart and resourceful that, with a little support and encouragement, she could have built that life for herself.  But, she sold herself, and her dreams, short.

But what she did do, was marry someone who could help her rise above her upbringing.  So, despite the limitations of her upbringing, my mom taught me to believe in something better.  Her younger sister also gave me a glimpse of how a strong woman lived her life after she lost her first husband to a Naval aviation accident and her second husband to leukemia.  And my dad taught me that, no matter how difficult the problem, you can solve it with enough work and resourcefulness.  Wow, has that served me over the last few years.

Mom, I'm sorry you couldn't achieve all that you were capable, but I thank you for giving me the foundation that allowed me to do that.  As I listened to the song and thought about my mom, I recognized that my mom's insecurity and underachievement is why I am so passionate about mentoring women to be strong and confident so they can achieve their potential--for my daughters, my friends and my colleagues.

If you're someone I've helped along the way, thank my mom.  I think about how much it hurt when I lost my mom, I think about my disease and I think about my girls.  I want to keep them from feeling that for as long as possible.

I go for a check-up next week.  It's always a time of underlying anxiety but I'll continue on trying to do what Amy said, "Live the life God has given me" and make lemonade of the lemons while I'm at it.

And, as Jason says, no need to worry anymore.

"A doctor then a lawyer then a Roosevelt 

Tried to take her underneath their wing    

She was in her 20's in the Bible Belt 

Before she knew she didn't need a thing 

She didn't need their pity on a single girl 

She didn't need their help to raise the brood 

She wouldn't be returning to her daddies world 

She didn't want a better attitude"

https://youtu.be/-vF7W0BawO8

40

If you go to the "About" page on this blog, you'll see a verse from Psalm 40 at the end that is the inspiration for my writing--"Your righteousness have I not hidden in my heart, I have spoken of your faithfulness and deliverance, I have not concealed your love and faithfulness from the great congregation." Psalm 40:11  But it's not just that verse that I find meaningful.  Pretty much all the verses before it describe my journey so far.

Which is why the U2charist that my church holds every year in our town's Irish Fest is so meaningful to me.  A U2charist is a traditional Episcopal Eucharist that features the music of U2.  Many U2 songs have a deeply spiritual element to them and there are biblical references throughout.  Their song "40" from one of my favorite albums of all time, "War", is the beginning of Psalm 40 set to some pretty stripped and haunting music.  It's always the Psalm in a U2charist.

The chorus always reminds me that God has brought me through some tough times and given me a new life--

I will sing, sing a new song.  

I will sing, sing a new song. 

But the next few lines remind me of the fragility of my remission and the risk of relapse

How long to sing this song? 

How long to sing this song? 

How long, how long, how long 

How long to sing this song?

Today, sitting in the Shamrock Tent at the Irish Fest, signing those words with my husband and my best friend sitting with me and Claire up on stage serving at the altar, I got tears in my eyes (which I usually do when I sing that song.)  I looked over and Al had tears in his eyes, too.

It's a question we wrestle with, a lot.  Yes, I know, none of us know how long we have and there's always the proverbial truck that could hit any of us.  But as my friend Kim, who has Amyloidosis and Multiple Myeloma, said in her blog--"I can be taken out by a standard issue truck tomorrow like anyone else. But I also know there is a truck out there with my name on it. (It’s probably teal in color) And I can’t lie. That changes you."  I totally agree with that...except the truck with my name on it is probably orange, right Debi?

So, I'll keep trying to make sure the way that realization changes me is positive, count on my friends and family members to call me out when those changes aren't positive, and trust God to take care of the rest.

I was thinking about the coincidence of our U2charist being held in the Shamrock Tent and how shamrocks are supposed to be lucky.  But, I've never really trusted luck.  It's in God's hands with an assist from medical science.

So, I'll ride....and I'll pray....and I'll pray while I ride...180 miles for cancer research in 6 days.

That's Claire on the right. Thanks Spencer Pugh for the picture.

https://youtu.be/M4jhxs0OJNk

Suffering for One Goal

I'm into the home stretch for my Pelotonia training and I feel like I've been pushing myself pretty hard this year to ride strong in our pursuit of One Goal==>End Cancer.  Tonight was my last hard ride preparing for Pelotonia, the grass roots cycling event that funds life-saving cancer research at The James.  Normally, this weekend would include at least one, possibly two, long rides.  But my college roomie, lifelong buddy and key partner in shenanigans, The Wench (Debbie Mahr), will be in town from Florida and I will be tapping (pun intended) into my Celtic heritage at the Dublin Irish Fest.

So, I thought I'd do some analysis on my training stats for the year.  So far, I've ridden 1,098 miles and climbed 17,384 feet which is almost to the height of the 3rd highest mountain in the US.  That's Mt. Foraker in Alaska at 17,400 feet.  

This past Saturday, I enjoyed(?) a wonderful 67.3 mile ride with about 40 folks.  The ride was led by one of the Pelotonia teams, Team COPC and it was great.  We rode out to Buckeye Lake, had breakfast and rode back.  It was a great morning of cycling, friendship and fun...and all of it was to train for Pelotonia...so we could ride strong on August 8-9 and inspire folks to donate money to fund cancer research.  You can get a glimpse here--

https://vimeo.com/134572515

As some of you know, I've been struggling with my cardiovascular function over the last several weeks, at times feeling like I might faint if the climb is pretty hard.  My heart rate during exercise has been elevated since my treatment by about 20 beats per minute in both average and max.  My theory is that I've recovered my strength enough that it's just now starting to exceed my cardiovascular capacity.  Good news is I've had a stress test and everything is normal.  The worst thing that can happen is that I pass out from overexertion.  The tech did say that I have a tendency to underestimate my level of exertion compared to how hard my heart is working.  Well, imagine that.

I use an app called Strava when I ride which tracks my speed, elevation and heart rate.  I'm a little obsessed with it.  Some people seem to have an attitude that if a picture isn't taken, an event didn't happen.  Well, when it comes to my cycling, if Strava data isn't generated, a ride didn't happen.

At the end of each ride it creates what they call a "Suffer Score" which they say  "By tracking your heart rate through your workout and its level relative to your maximum heart rate, we attach a value to show exactly how hard you worked. The more time you spend going full gas and the longer your activity, the higher the score. Compare your Suffer Score with friends and pros, see if you can do a truly epic workout and motivate yourself to push that extra bit harder!"

My max Suffer Score this year was 278.  It was on the first day of TOSRV, the 2-day 210- mile bike ride I did in May.  We were riding fast, there was a bit of a headwind and the hills came later in the day when I was fatigued.  I've had two other rides over 200--Velvet Ice Cream and a Team Buckeye training ride in April.  My average suffer score this year is 107 and I've had 7 rides with a Suffer Score over 150. 

As I was researching the score, I came across a post on the Strava blog about a professional cyclist's Suffer Score . After stage 18 of the 2013 Tour de France, Laurens ten Dam , named his ride "suffered like a pig yesterday."  I'm assuming by the title that he found it exceptionally hard.  Looking at the profile of the 105 mile ride, I can understand why.

The interesting thing is, HIS SUFFER SCORE WAS ONLY 165!!  Looking through some of his Strava data, his Suffer Scores are usually below 120 as a professional cyclist in some of the toughest races in the world.  

I found other professional cyclists with Suffer Scores on Strava.   Paul Martens, a teammate of ten Dam, titled his ride in this year's stage 18 "18th stage glandon, what a mo... F...er".  Again, the title he gave it indicates he found it a little challenging.  His Suffer Score was 178.  Yeah, that's 100 suffer points or 45% below my max.  The profile of that 115 mile ride looks like this

So, I've learned that when I feel like I'm working hard on my rides, the data says my perception is right.  

And you know how I feel about data.

To all who have supported my ride, thank you.  I hope you see how hard I'm pushing myself in pursuit of this goal to end cancer.  Yes, my Suffer Scores are high but, as I say to myself on almost every ride, "Wow, this hurts but it's not as bad as a stem cell transplant."

Together with the researchers at The James, we're gaining on the targeted therapies that will ensure the pain in the future comes from the bike and not the cancer treatment.

Just know that in 15 days, there will be more than 7,700 folks riding to lower the Suffer Score for cancer patients across the globe.  Whether you're a long-term cancer survivor who's made peace with the enemy inside, someone who's currently in treatment, one who's newly diagnosed and still angry at your body for betraying you, or a friend or loved one of someone who's been touched by cancer...we are riding, and sometimes suffering, to inspire someone to make the donation that funds the grant that creates THE breakthrough that you've pinned your hopes on.  You know, that breakthrough you know you need but you're almost afraid to hope for.  

Yeah, we're riding for that and we're riding for you.