Why I Ride

Today, I went on a 108-mile ride from Columbus to Cincinnati with 11 other Pelotonia cyclists.  It was my longest ride of the season and despite an inauspicious start--went down in a pile-up at mile 2 and hurt my hip, and the group had some trouble maintaining any pace the first 25 miles--it ended up being a great ride.

At mile 25, I was able to join up with a faster group.  During the first 25 miles, we averaged about 12 mph.  Over the last 85, we averaged 17 mph, including cranking it at about 20 mph from mile 104 to 108.  It was a great group.

During the lunch stop at mile 66, I was feeling pretty rough--my hip hurt from the fall, my hamstrings were reminding me how much work they'd done and it felt like a red hot ice pick was jabbing me in my right trapezius.  I was lying on the floor of the picnic pavilion where we'd stopped trying to not think about how much my body was hurting.  While I was lying there, I was scrolling through Facebook and saw this post from my nephew's wife.  My nephew, Seth, has been through a tough battle with cancer over the last 8 months--two surgeries, two rounds of really rough chemo, multiple hospital stays.  It was tough to see such a young man, with two young children, go through such a hard battle.  But Amanda's post says it all.  THIS is why this group of people, and so many others, ride Pelotonia.  To see someone diagnosed with cancer, and have an effective treatment available that allows them to return to a normal life.  Every mile I put in, is in hopes that I can pay it forward for someone who is diagnosed after me.  That they'll have the ability to return to a full life that they find enjoyable and meaningful.  Like I did, like Seth did.

Please consider a gift to Pelotonia to help others who face a cancer diagnosis have hope of a full recovery.  You can donate here  pelotonia.org/kat4gators

Still Going Strong

I'm writing this post from Sandy, Utah on the last day of a fabulous ski vacation.  My husband, two daughters, son in law and brother in law skied for four days at three different resorts and it was fantastic.  The weather was great--3 days of nice snow and bluebird skies, and one day of constant snowfall.  We are all about the same level skier and so it's fun to just chase each other down mountains.

We stayed at an AirBNB that was awesome.  It was a 4BR, 3Bath home located about 25 minutes from the slopes and 5 minutes from the grocery store.  It has a lovely hot tub and is really comfortable and cozy.  Of course, the best part was just spending time together. Our older daughter, Amy, and her husband, Sean, live in Florida so the times when we're together with them are really special.

We skied at Solitude, Alta (2 days) and Snowbird.  Each day and resort was special. Here are a few photos.

Me and my brother in law (top) and me and my husband

My daughter Amy and her husband Sean

One of the mountains at Alta

Claire, me and Amy

We had the GoPro recording at various points.  I haven't had a chance to compile the overall video but this 45-second excerpt was too good not to share.  Thankfully, Amy is ok.  You can see the care and compassion inherent in our family as we all double over in laughter at her misfortune.  As she watched the video, she commented, "I really like how you're practically contorted with laughter."  :)  Amy's Crash Video

As you might expect, I gather my stats as I ski so I can see number of runs, distance and speed of my day.  I'm proud to say that I set a new land speed record this year.  My previous record was 42mph on the bike, the ski record was 38mph.  This year, I hit 48mph on skis.  Boy did it feel good to be able to go that fast!

This time of year is always a time of reflection for me because I received my Amyloidosis diagnosis on February 25, 2013.  I think back to those scary times when I wondered if I'd ever be able to do active vacations with my family ever again.  I think about the ski trip we took between my chemo and stem cell transplant with the 30 pounds of fluid in my abdomen.  I couldn't even buckle my ski boots but I skied every morning with my family even though I could hardly eat because of the pain from the GI involvement.  I remember the grief I felt when I was too weak to ski down the final day and had to ride the gondola down the mountain.  I wondered if that would be my last act on a ski slope....one of defeat.

But, that wasn't the case and I've been able to continue doing the activities I love--cycling, skiing, and most importantly, traveling with my family.  Several times a week, I see a post on the Amyloidosis Facebook page or an online forum about someone dying from the disease or being permanently incapacitated.  I am so thankful for every day of health I have.  I lost something I took for granted and I try to savor its return every day.

Next month, I'll be speaking with my physician, Yvonne Efebera, MD, to the board of directors for the Foundation of the cancer hospital where I was treated, Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute...aka The James.  My message will be one of thanks, thanks to each person there and the millions of others who have supported cancer research in the past.  Research into my chemo drugs and the use of stem cell transplants many years ago is the reason I can savor my health and the life it affords me.

If you'd enjoy the opportunity to give that gift of health and hope to someone in the future, please consider donating to my Pelotonia ride.  pelotonia.org/kat4gators 100% of all rider donations go directly to cancer research.  To learn more, you can read some of my previous Pelotonia posts here--http://katseyeview.blogspot.com/search/label/pelotonia 

Your donation could fund the research that creates the treatment that returns health and hope to some person in the future.  Let's End Cancer!

Data Crunching

My hospital's online chart system finally added my test results from when I was in the hospital.  This completed my data set for my tests so, of course, I had to do some data analysis.  It looks like this--

• 2008    1
• 2009    1
• 2010    8
• 2011    4
• 2012    26
• 2013    491
• 2014    63
• 2015    48

So, not too much until 2012 when I knew something was wrong starting in October; diagnosed and treated in 2013 ; and working on my recovery in 2014 and 2015.  Nice to see the numbers trending down.  Here's a graph showing the number of tests by month.

Here's a word cloud I did of the providers who ordered the tests. You see #1 is Yvonne Efebera, MD  with 99 tests, #2 is Tammy Lamb  at 89 and #3 is Rebecca Scott (the nurse practitioner on the bone marrow transplant unit)  with 80.  I've had tests ordered by 35 different providers.  The father of  a girl who played field hockey with Claire, Rob Baiocchi, MD is a hematologist at Ohio State.  He mentioned at one of the games that I looked familiar and asked if he'd taken care of me.  I told him that the time I was in the hospital was such a morphine induced blur and perhaps he did, but I didn't remember it. Sure enough, when I looked at the tests from when I was an inpatient, I saw that he ordered my red blood cell transfusion.  Quite a small world. 

I also did a word cloud of the tests that were ordered.  You see the focus on the blood tests to see how my blood health was doing in the onslaught of chemo.  CBC to check the components, hepatic function panel to check liver function (the amyloids went after my liver and chemo is metabolized by the liver--double whammy), interesting that the immunoglobulin free light chain test to measure the substances that create the amyloids is relatively small.  They say that it's important to protect organ function for amyloidosis patients so it's nice to see the word cloud confirm my physician's focus on that.  

I had a great appointment with Dr. Efebera this week.  I posted this on Facebook--

4 month check up and all the digits look good. Kappa light chains aka bad stuff is below normal at 2.79. It was 79 when diagnosed. Key liver test that was 500 right after my transplant is now 57.

I sent this email to Dr. Efebera tonight at 5:06--

Alan was asking me about our appointment and asked what we discussed about my liver.  I said we barely even talked about and breezed over the lab results.  I said, "She didn't even palpate it.  My liver is like the best gift I bring Yvonne and she didn't even take the time to enjoy it."  Glad you enjoyed the kidney results, though.  :)

Merry Christmas, from all my organs.

 She replied at 5:08--

I know!!!!.   Your abdomen is so flat (flatter than mine) that your liver said “ no need to palpate me today, you can already see me” 

And then added at 5:09--

and I love those kidneys of yours.

 I love my kidneys, too.  It's been a good week and I'm so grateful for how well I'm doing, what a great care team I have and how bright the future looks for Amyloidosis patients.  2015 has been a pretty good year!

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!

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!

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

My Second Birthday

Yesterday was my 2nd Stem Cell birthday. Thought I'd share some glimpses of my day. My daughter gave me a "You're 2" birthday card, I went on a 30 mile bike ride with my husband and my oncologist's nurse practitioner (who I call my 3rd daughter), I went to the 2 games my daughter's lacrosse team played in a tournament and then I went to a fund raiser for Lymphoma research at The James, our local cancer hospital. Sure beats being in the hospital. If you're in those early phases of diagnosis and treatment and wondering what life can be like on the other side, see below.  Keep the faith!

Remembering the tough times

Tomorrow marks the second anniversary of my admission to The James Cancer Center for my stem cell transplant...followed by my second stem cell birthday on Saturday.  Those of you who followed my blog last year know that this time of year was filled with remembrances of the darkest and bleakest days of my life.

A few weeks ago, I shared a post from 2 years ago asking for prayers due to the pain in my GI tract.  A good friend, whom I consider a spiritual mentor, commented on the post asking me to stop, saying it's over and that I should "keep gratitude. Embrace hope now."  Whenever a trusted friend advises me to change my behavior, I like to stop and reflect on what's causing the behavior and consider the recommended change.

The anniversaries of my time in the hospital will fall near Easter most years, as it did when I was in the hospital in 2013 and this year.  It's an interesting parallel and one I've pondered before in "Stem Cells for Easter".  I was kicking around my friend's admonition and thinking about Holy Week, pondering the somberness of Good Friday against the joyousness of Easter.

When there's joy in the outcome, what is the role of remembering pain and suffering that was on the road to the triumph?  I wish I knew.  I just know for me, when I think of the suffering, it brings my gratitude from lurking in the back of my mind to the forefront of my consciousness.  And it does it without undermining my hope.  I don't look back at the tough times and have fear they may come back in the future.  I look back to remind myself of how wondrous is the joy and how precious is the life I have now.

Exaggerated joy and a sincere appreciation for life..if remembering the tough times gives me that, I think I'll keep doing it.

So Grateful

I just finished a week long ski vacation with my family--husband Alan, daughter Amy and her husband Sean,  daughter Claire and adopted daughter Tammy--in Alta, Utah.  Two years ago at this time, I was in the midst of my chemo for my AL Amyloidosis and pre-admission testing for my stem cell transplant.  This year, I was skiing better and harder than I ever have.

According to my SkiTracks app, I skied almost 50 miles over the course of 5 days of skiing.  I hit a new ski speed record of 39.7 mph and I was able to ski a lot more expert (black diamond) runs than I ever have.  When I was on my ski vacation two years ago, I was afraid that I might never have an active (or perhaps any) vacation again with my family.

We had such a wonderful time with all of our adventures and misadventures.

Skiing at Snowbird Video <== Click the link to view the video
This is a video I filmed the third day.  Sean is in the white and grey coat and black pants, Amy is in the light green coat and black pants, Claire is in the dark galactic-looking coat and red pants, Alan is in the yellow Gorton's fisherman looking coat and black pants, and Tammy is in the red/fuschia jacket and white pants.

This video captures some of our misadventures with some footage in the middle of me skiing (since I'm usually the one behind the camera.)  Koontz Misadventures Video  <== Click the link to view the video

The third day there, we tried to follow a circuitous and icy trail to ski out to the slope--that's the beginning of the video.  On the next to the last day, we tried to ski down into one of the bowls that was a steep, icy, mogul-filled mess.  That's the end of the video.  Alan filmed some of this so you'll see me in my green coat and white pants.  Everyone else made it down on their skis, butt or a combination of both.  I was still at the top at the steep drop in point, afraid I was going go full scorpion ala the TV show "Ridiculousness".

I actually yelled from the top, "I can't get down."  My family was quite shocked because they are not used to hearing me say, "I can't".  But, I do have a higher level of caution after everything Ive been through.  It's not so much of a "my health is precious and I must protect it" mentality as it is a "I know how hard it is to recover from a set back and I don't want my foolishness to create one.  I'll leave that to my plasma cell clones."  So, I took off my skis and slid part way and walked the rest.  Yes, despite popular opinion to the contrary, I do know my limits.

But, I also like to push those limits.  I was able to reach a new ski speed level of 39.7 mph.  Here's the stats from that day.  Sure, it's not the 80mph that downhill skiers will reach but it's not bad for a 52-year old woman who's skied about 30 times in her entire life.


All in all, the week was a great reminder of how my life has returned to normal after my diagnosis and treatment.  And for that, I am so grateful.  I know many have not had a chance at life, much less a return to a normal one.  On Tuesday, while I was at the Park City Olympic Park enjoying a bobsled ride on the Olympic track, the funeral of my friend Susan who recently died of metastatic melanoma was being held back home.  I realized how fortunate I am as I thought about Susan and her family.

One of the best parts about a vacation with my family is the opportunity to spend extended periods of time with my two daughters--Amy age 29 and Claire age 17.  We joke and laugh and solve the problems of the world and the problems of each other.  As I said on Facebook, there's a hole in my heart when we can't all be together.  I took this selfie in the car on the way to take Claire to the airport.  She had to come home 3 days early because she had a lacrosse scrimmage.  Claire and Amy had just finished wrestling around and Claire had been choking Amy...all in sisterly fun.  Amy looks pretty good, considering.

Joining in on the fun was my friend Tammy who also happens to be the nurse practitioner for my oncologist.  We've developed a strong friendship over the last few years.  It was really fitting to have her with me on the first family ski trip since my diagnosis and treatment.  She supports me in my physical battle and I support her in her emotional ones.  It's an interesting symbiotic, yin-yang type of relationship.  I joke around that she's my third daughter but she would really be my fourth since Amy is 1, Jessie Biarnes (Amy's best friend since 4th grade) was named daughter 2 before Claire was born, Claire is 3 so that makes Tammy daughter number 4.

The best part of being together is that even when things were going sideways, literally and figuratively, there is always lots of love and laughter.  That's what's gotten us through many an adventure!

Claire, Sean, Amy, Tammy, Kathy, Alan

Lots more good pictures here-- Click to see awesome photos