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.

Juxtaposition

Juxtaposition—the fact of two things being seen or placed close together with contrasting effect.

I’ve spent the last week on vacation in Mt. Shasta, California with my husband and our youngest daughter.  We rented a little cottage and spent our time hiking and white water rafting through some beautiful scenery.  As you'll read below, I spent a lot of time thinking about some things...some of them a little heavy.  But don't worry, it didn't spoil my vacation.  I'm pretty sure Alan and Claire had no idea of what I was wrestling with mentally and emotionally.  I've gotten pretty good at the skill I call "active ignorance" (the act of ignoring something that I don't want to think about).  You can see the fun from the vacation here--Kat's Vacation Pics 

I’ve had a lot of time to think and there have been a few contrasts that I’ve been turning over in my mind:

•       Choosing to live out of a backpack or having to live out of a backpack

•       Consuming resources or preserving them

•       Relying on science or trusting in God.

Choosing to live out or a backpack or having to live out of a backpack

We were staying very close to the Pacific Crest Trail so we encountered several people who were hiking the trail.  It appeared that some had made a choice to spend time on the trail.  We met a woman at the market in Castella who was transferring her possessions to a new lightweight backpack she had just taken out of the shipping box.  She said she was spending a few months hiking the Pacific Crest Trail.  Al, Claire and I talked about the woman and others we’ve known who have taken time from their “normal life” to go on extended hikes. 

There were others we encountered who appeared to have fewer options when it came to their backpack—not just the option of getting a new one but having the option to leave it behind.  I told Claire after one particularly rough looking guy passed us with his backpack, “There’s a big difference in the life you’re leading whether you choose to live out of a backpack or you have to live out of a backpack.” 

Consuming resources or preserving them

The first full day we were in Mt. Shasta, we drove up to Ashland, Oregon to go white water rafting on the Upper Klamath River.  It had 40+ named rapids with many being class III-IV+.  During the trip, the guide offered to let someone “ride the bull” through some rapids…that’s sit with your legs over the bow of the raft holding on to a rope. 

Now, in my “before” I would have been the first to do that.  If there were an option for adventure and adrenalin, I’d go for it.  But now, in the “after”, I have this thought of how hard I’ve worked to regain my strength and how I want to protect my health and strength—the choice to preserve and not fully consume.  It's just like any other finite resource--money, time, fuel....life.  I told Al and Claire that so many people have invested in my recovery—my family, medical team, church family and friends—that I don’t want to do seemingly silly things that might put that health and strength at risk. 

If I were a corporation, I’ve gone from a sole proprietorship to a public company.  I almost feel a need to hold a proxy vote before I make any decisions that could put my health and strength at risk.  Plus, there’s always this little voice that says, “How will you explain this to Yvonne?” (my oncologist) if I get seriously hurt.  It’s a tough question for those of us who’ve worked hard to recover from treatment and enjoy our remission but who face a likely relapse….”Do you consume or preserve the precious amount of life that’s left?”

Relying on science or trusting in God

I was perusing Twitter while we were waiting for our flight out of Columbus at the start of our vacation.  One of the Mayo oncologists I follow, Dr, Vincent Rajkumar, tweeted out a link to a study recently published by Mayo.  Reading those studies can be an emotional crapshoot leading to vastly different places—filled with hope or fear.  Unfortunately, this one led to the latter.

The study was the first long term retrospective on the role of chromosomal abnormalities in overall survival of AL Amyloidosis patients.  I’ll save all the discussion of factors, sample sizes and p values and cut to the chase.  Bottom line, it found that folks with my chromosomal abnormality—a translocation of the 11th and 14th chromosomes—and my level of plasma cells in their bone marrow (<= 10% I was 10% and 7% depending on whether you consider the core or aspirate sample) had a median overall survival of 53 months compared to “not reached”...meaning the folks who met this criteria (me) died after 53 months on average and those who didn't have these features were still alive.  I've always taken comfort in the fact that my heart has never shown evidence of amyloid infiltration and because of that, have been able to dismiss a lot of the bad news found in the studies.  But this statement in this study totally undermined that confidence.  "abnormal cIg-FISH had a negative prognostic impact independent of NT-proBNP and other adverse features on multivariate analysis. Even high-dose chemotherapy with stem cell support did not abrogate the risk imparted by abnormal FISH."  So, even if you don't have heart involvelment (as measured by NT-proBNP) and you have a stem cell transplant, this criteria still impacts overall survival.  You can read all the gory details here-- Abnormal FISH in patients with immunoglobulin light chain amyloidosis is a risk factor for cardiac involvement and for death

So...53 months.  I’m 29 months in when the median overall survival is 53 months.  I retweeted the study with an admittedly melodramatic comment and Dr. Rajkumar was gracious enough to reply in an attempt to talk me off the ledge.

So, Dr. Rajkumar says my expected survival is longer….6 months, 6 years?  Either of those numbers is less than I’d like.  I’ve always said a 30-year remission is as good as a cure for me. I know a woman whose disease course has been very similar to mine so far and she's 20 years out.  But 53 months is decidedly less than the 360, or even 240,  I’m hoping for.   What now?

It seems with all of these juxtapositions, it’s not a question of “or”, it’s a question of “and”.   I can choose to fully consume my life while being smart about preserving it.  I’m able to live my life more fully than many my age who have never been sick and I can certainly consume more than many Amyloidosis patients I know.  And, whether I'm choosing or having to live out of a backpack, well at least I'm alive.

I can rely on the science to understand the challenges and risks ahead but I will trust in God to guide me through them.  He’s gotten me through everything so far.  As my friend John says, we're curve-busters. He's gone through 2 stem cell transplants, a few rounds of chemo and radiation in his fight with Multiple Myeloma so he speaks from experience. And, if my time is less than I’d like and I can’t do the things I’m hoping to do—guide my daughters as they become adults and build their families, dote on some grandkids, spend some time in retirement with Alan—then I have to trust that God will provide for the love and nurturing that I can’t.

So I trust in God AND I also ride my bike to raise money for cancer research…hoping it will help me, knowing it will help someone.

For in hope we were saved. Now hope that is seen is not hope. For who hopes for what is seen?  But if we hope for what we do not see, we wait for it with patience.

--Romans 8:24-25

We are greater than I

This French ad for Samsung entitled "We Are Greater Than I" really captures the spirit of Pelotonia, the grass roots cycling event here in Columbus that's raised $82 million for cancer research.  The ad tells the story of a domestique.  These guys are the work horses of professional cycling, like the Tour de France.  They clear the way, block the wind, carry food and water....all so the team's lead rider gets put in the best position to cross the finish line.

As both a Pelotonia rider and cancer survivor, I can relate to both roles...the domestique and top rider.  I train, raise money and ride the weekend of August 8th so that a cancer patient gets put in the best position to cross the finish line.  I think back to last year's ride...the thousands of riders and the thousands of supporters cheering us on...we're all domestiques for a cancer patient somewhere.  Maybe they were just diagnosed, maybe they're just finishing treatment, maybe they've just relapsed.

We're all out there, we Pelotonia riders, putting in lots of miles, clearing the way, so we can get that cancer patient to the finish line.  So, to all my Pelotonia brothers and sisters, watch this ad, think about the patients we're getting to the finish line and accept the thanks of this patient who made it across that line in 2013.

https://youtu.be/M7tCtx_nN7g

Hope and Awareness

One of the ways I felt I could create some good from my membership in this crappy Amyloidosis club was to use my story to bring hope to others who've been newly diagnosed and to raise awareness of Amyloidosis so people might get diagnosed faster.

The summer edition of Frontiers magazine from The James (my cancer hospital) is out and there's a profile of me and my participation in Pelotonia, a cancer fundraising ride that's held here in Columbus.

You can read the article on page 18 here Summer 2015 Frontiers Magazine or here

Yeah, I got some lemons but I'm busy makin' lemonade....