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....

Seeing the water

Lately, I've really been spending time soaking (ha, you'll catch the pun later) in the commencement speech by author David Foster Wallace entitled "This is water."  I don't recall how I first came across this speech, but I've read it a few times since my diagnosis.  It was given in 2005 at, coincidentally enough, Kenyon College...which is also the location for the 100-mile finish for Pelotonia.  This video adaptation is an excerpt that catches the gist of the message...but I highly recommend reading the entire piece.

https://www.youtube.com/watch?v=8CrOL-ydFMI

He starts off with this story--

There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says "Morning, boys. How's the water?" And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes "What the hell is water?"

He goes on to talk about how our default setting is self-centeredness....not in a preachy, negative way but in a "there's no other way for us to experience our reality than from our own perspective" way...with ourselves in the center.  And it's easy to get frustrated with the mundane boring parts of life like commuting home or going to the store...but we can make a choice as to how we see those things.

If you're automatically sure that you know what reality is, and you are operating on your default setting, then you, like me, probably won't consider possibilities that aren't annoying and miserable. But if you really learn how to pay attention, then you will know there are other options. It will actually be within your power to experience a crowded, hot, slow, consumer-hell type situation as not only meaningful, but sacred, on fire with the same force that made the stars: love, fellowship, the mystical oneness of all things deep down. Not that that mystical stuff is necessarily true. The only thing that's capital-T True is that you get to decide how you're gonna try to see it. This, I submit, is the freedom of a real education, of learning how to be well-adjusted. You get to consciously decide what has meaning and what doesn't.

He concludes the speech with this

I know that this stuff probably doesn't sound fun and breezy or grandly inspirational the way a commencement speech is supposed to sound. What it is, as far as I can see, is the capital-T Truth, with a whole lot of rhetorical niceties stripped away. You are, of course, free to think of it whatever you wish. But please don't just dismiss it as just some fingerwagging Dr. Laura sermon. None of this stuff is really about morality or religion or dogma or big fancy questions of life after death. The capital-T Truth is about life BEFORE death. It is about the real value of a real education, which has almost nothing to do with knowledge, and everything to do with simple awareness; awareness of what is so real and essential, so hidden in plain sight all around us, all the time, that we have to keep reminding ourselves over and over: "This is water." "This is water."

I really believe that one thing my diagnosis and illness has taught me is to really see the water all around me.  So many things that I might have found frustrating in the past are now miraculous--lines at the grocery store, a traffic jam, something forgotten by my absent-minded husband (ok that one still gets me but not as much as before I got sick.)  I think to myself, "Yeah, this might be irritating but you're not in the hospital, you're free to do pretty much whatever you might want and this crazy disease is under control.  What do I have to be upset about?"

Tonight, as I enjoy my normal life....as I think about the email from my oncologist over the weekend summarizing my progress that says CR (complete response/remission--the best outcome) in all areas (hematology, kidney, liver/GI) and I move further and further from the dark, scary days of diagnosis and treatment, I pray God will continue to bless me with the ability to "see the water."

Amen.

Good News--Data Geek Style

Today was such an overall great day....good news at the gist (my term for any of my doctors...today was oncologist) to start the day, saw a fellow Amyloidosis patient who's getting his transplant at The James right now and went to a little get together at the Multiple Myeloma research lab at OSU to see the progress they're making in the fight against MM....which often leads to treatments for AL Amyloidosis.  I saw a poster about a model that calculates the optimal dose of the chemo drug used before the stem cell transplant and the work was funded by a Pelotonia idea grant.  I also learned about work they're doing to reprogram patient's immune systems to attack myeloma cells.  Oh, and I found out that my older daughter is going to Bonnaroo with us in June to enjoy 3 days of awesome music in Tennessee.  How cool is that???

I was mistaken on the change to the follow-up schedule, though...I only move to 4 month follow ups from 3.  Not as long as I'd hoped but better than no change.  I can reduce my number of visits by one next year and if things still look good in a year, the follow-up schedule goes to every 6 months.  I am holding you to this Yvonne Efebera!!

So what does good news look like to a data geek.  Exhibit A, the statistical process control chart for my kappa free light chains (FLCs).  Those are the bad substances my plasma cells over produce that clump up to create amyloids.  As long as my value is below the UCL (upper control limit) my system is operating in control.

Exhibit A

Exhibit B is a chart I created to put all my free light chain values on the same scale.  The key measures are kappa FLCs, lambda FLCs and the ratio between the two.   But they all have different normal values so I calculated the mean of the normal value for each and plotted the percent variance from the normal mean for each value.  If it hits 100, it's right in the middle of normal.

Exhibit B

You can see the bad guy in red starting to trend up but, as shown in the SPC chart, it's well within normal limits.

Exhibit C is the same variance from normal mean chart but for my key liver values.  Those key measures are alkaline phosphatase (the main one), ALT and AST.  ALT and AST will vary more at different points in time depending on if I've had alcohol, the quality of my diet or other environmental factors.  This one looks pretty good, too....except for the spike in July (after vacation) and January (after vacation.)  Ooops.

Exhibit C

Exhibit D and E show the recovery of my kidneys.  Because the amyloids pry open the filters in your kidneys, a lot of protein that would normally stay in the blood leaks into your urine.  To see how much protein you're losing, you have to collect all your urine for 24 hours and they measure the amount of protein.  (I'll save the stories of how to get creative in collecting urine for 24 hours when you're as active as I am.  Hats are for amateurs, amiright, Kim??) The first chart is just a line chart of protein amount in the  24 hours of urine. The red bar in the second chart shows how much protein was in my urine when diagnosed.  The green bars show how much the protein volume dropped in each test.

Exhibit D

Exhibit E

The only not so great news is that my platelets still haven't recovered from the chemo, transplant and revlimid.  It's not the worst it's been but it's just not getting traction on recovering yet.  See Exhibit F.

Exhibit F

My IGG (Immunoglobulin G) levels haven't recovered, either and those are key to the secondary immune response, ie your immune system's response to stuff it's seen before.  Normal is 600-1714 mg/dL and mine has never gotten much above 500.  But it's been as low as 252 so it's SLOWLY heading in the right direction.

So this, boys and girls, is what good news looks like to a data geek.

Now, if I could just get that instance of Teradata and Tableau installed at home it would make this sooooo much quicker......

Gist Day--Cycle 9

Well, tomorrow is Gist Day...not a week this time since I only see my oncologist.  While you might think these appointments become a non-event after a while, that hasn't happened for me yet.  Yes, the anxiety preceding the appointment lessens over time but it's still a reminder of the enemy lurking within my body.

Tomorrow's appointment is a big one because it's 2 years after my transplant and if my numbers look good..well, technically there's really one main number I care about--kappa free light chains to be exact..then I can move to 6 month appointments from the current 3 month schedule.  Having half the appointments to be anxious about would be a welcome change.  As you know, I consider these appointments my "contract extensions."  Previously, when I used that term, my friend Todd recommended that I negotiate a longer contract.  Tomorrow, I get a shot at doubling the length of my contract.

So, as I enter KATE (Kat after transplant era) cycle 9 (number of oncology appointments since my transplant), I'm hopeful for continued improvement but trust God's plan regardless of what happens.

Here's my song for the day--

"I wanna set fear on fire, and give dreaming a fair shot 

And never give up whether anybody cares or not"

https://youtu.be/WaXXR9kU5K0