Raising my Ebenezer

Those who've read my blog for a while know that I listen to a lot of music...different artists, genres, periods.  And while I love some hard hitting indie rock (looking at you Frank Turner, current fave), classic Christian hymns are go-to music for peace and comfort.  I wrote about it here (the morning after I was diagnosed), here when I booked my appointment at Mayo Clinic, and here when I reflected on my time in the hospital.

As I recovered and left the vestiges of illness behind, I thought more and more about ways to remind myself of God's goodness to me through this time.  One of the reasons I think and write about my illness is so that I can bask in the blessing that is my recovery.  

In one of my favorite hymns "Come Thou Fount of Every Blessing", my favorite line is "Here I raise my ebenezer, here by thy great help I've come."  An ebenezer is a stone monument meant to signify great help from God.  It's taken from 1 Samuel 7 when the Israelites defeated the Philistines.  In the hymn, that line about raising an ebenezer is about acknowledging God's blessings.

In my usual rebellious manner, I've added a new twist to the "ebenezer" concept.  The monuments I've created to remind me, and others, of God's goodness and to celebrate my recovery are...tattoos.  After getting such a great report from Dr. Efebera last month (normal, stable FLCs; totally normal organ and blood biomarkers; move to 6 month follow-up) and feeling like my physical fitness was returning to my pre-illness level, I knew I wanted to get a tattoo to commemorate this..and remind me to share my story with others to bring hope and encouragement.  I knew exactly what I wanted to get....

After stem cell transplants, you don't know if it was successful until 100 days after the transplant.  That's when the tests are done to determine if that hell I went through actually accomplished anything.  As you can imagine, it was a pretty stressful time for me.  One day during this time when I was descending into an abyss of worry, I was standing at my front window.  I saw a goldfinch in the bushes.  I love birds of all types, especially goldfinches, and enjoyed watching the little guy flit around.  At one point, he stopped and turned his head.  It seemed like he knew I was watching him and I was sure he would fly away.  Instead, he flew over to the window where I was standing, landed on the frame and stood there staring at me for about a minute.  It was so cool and such a wonderful little blessing to break my worry.

Later, I found out that in Renaissance times, the goldfinch symbolized a return of health or a rising from the sick bed.  How cool is that?  

Last week while I was in Jacksonville spending Christmas at Amy and Sean's, I got a goldfinch tattoo on my inner bicep from James Cumberland at Sunday Tattoo. Sean said he does great bird tattoos and he did not disappoint.  Not only did he come in on his day off to fit me in, he was a nice guy and did great work.  I originally wanted to get it on my forearm so it would be more visible and allow me to share it's significance ie "raise my ebenezer."  I consulted about this with two women in my field who are about my age, much more successful than me and share my rebellious spirt. They both said I should go for it since it's such a great story and, as one of them said, it's not like I have to prove myself professionally.  But my daughter Amy and one of her friends ganged up on me and strongly suggested I put it in a location that was more "hideable" in a business setting.  It's on my inner bicep.

Here are two pictures taken exactly three years apart.  The one on the left was taken January 1, 2014 is when I decided I was strong enough to really start working out again.  I'd been working out some but I wanted to take a picture of where I was when I moved from recovering from my illness and treatment to restoring my physical fitness.  The one on the right was from this morning, showing my restoration and my "ebenezers".  (I'll share the story about the wave tattoo another time.)  


And here's a close-up of the goldfinch.

Now, whenever I raise my right arm--to work out, high five, clap at a concert, give a hug, anything--I'll be "raising my ebenezer" and remembering God's blessings.

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!

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

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

Clawing through Concrete

Maintaining a consistent state of mental and emotional balance is the real battle for me that has lasted much longer than the physical one.  So many minor things can knock me off balance.

As I researched and learned more about the disease early on, I was on a quest for a number of months....how long did I have left?  I wrote about it here, The Real Slim Shady & Multiple Myeloma just about one year ago.  I was able to let that thinking go and move on to living my life without obsessing about it....most of the time.

Occasionally, I'll go down a rabbit hole and the thinking goes something like this... 

living 10 years with this disease is pretty good.  That's 120 months.  You've already burned through about 20 of those.  You better hurry up and share that wisdom with your daughters, or get that retirement account in better shape (for Alan to use because God knows I won't use it), or insert whatever random thought of the future is bothering me.

It's like a New Year's Eve countdown clock just pops up in front of me sending me into a tailspin.

The other thing that sends me down that rabbit hole is when I notice something physically that makes me think my recovery is at risk--my liver feels enlarged, my kidney hurts, my stomach is distended.  The thoughts at that point go....

you've worked so hard to get yourself back into shape and now it's all for nothing.  You're getting sick again and soon your physical strength will be gone.  And you'll have to do that work all over again....if you can do it.

Getting out of this feels like I'm clawing through concrete.  My tenuous fingernail hold on mental and emotional strength slips and I have to claw my way back to regain the hold and enjoy my life.  It's an exhausting process.  And there aren't that many people who can relate to it.

I think back to the time before I was sick and compare it to how I feel now, always around people but separate in my struggle.  This excerpt, from The Journey of the Magi by TS Eliot that the assistant rector at my church shared on Sunday as she prepares to take on a new assignment, captures some of the feeling--

All this was a long time ago, I remember,
And I would do it again, but set down
This set down
This: were we led all that way for
Birth or Death? There was a Birth, certainly
We had evidence and no doubt. I had seen birth and death,
But had thought they were different; this Birth was
Hard and bitter agony for us, like Death, our death.
We returned to our places, these Kingdoms,
But no longer at ease here, in the old dispensation,
With an alien people clutching their gods.

Living this way with this knowledge, this recognition of the scarcity of time and uncertainty of the future could be a blessing. I tell myself it is and try to live accordingly. But occasionally, doubts creep in, and I wonder if I'm lying to myself. 

Hey look it's me!

The winter newsletter of the Amyloidosis Foundation featured my story.

You can read it here.  https://origin.library.constantcontact.com/download/get/file/1103817697559-49/Dec_2014_newsletterfinal.pdf

Swab Your Cheek, Save A Life

Sharing this for a friend and fellow Amyloidosis survivor--

WILL YOU MARROW MY DAUGHTER?

Tracy Jalbuena, age 43, wife , mother of two beautiful kids, ages 15 & 10 years of age, Emergency Room physician.

She has a very rare disease. No, let’s back up. Her dad has a very rare (9 in a million) serious disease called Primary Amyloidosis. Tracy has the same disease ... which is not hereditary. This set of circumstances has not been seen in first degree relatives before! The world over!

Now Tracy has Multiple Myeloma, a blood cancer and a cousin disease to Amyloidosis. But wait. She has a rare subset of Myeloma which is very aggressive. Both of these diseases arise from the bone marrow and are insidious and vicious.

Tracy urgently needs a stem cell transplant, formerly known as a bone marrow transplant. This will be her second one. The first was an “auto” with her own stem cells; the second will be an “allo” with donor cells.

Guess what? There is no donor! There is ONE person out of the millions listed in the National Marrow Registry who matches Tracy, but this individual is unavailable to donate for one year. Why a scarcity of donors? Tracy happens to be of Filipino and European-American ancestry and there are not enough Filipino American people who are aware of the need to donate life saving stem cells. There are not enough Asian donors in general to meet the needs of our diverse melting pot culture. A Caucasian person has a 93% chance of finding a match, while one of Asian or mixed Asian descent has only a 73% chance of successfully matching with a donor. A sibling has only 30% chance of matching and Tracy’s sibs did not.

Tracy’s work in her chosen field followed an extended medical school course and residency. For just three years, Dr. J. cared for patients in Camden, Maine and surrounds with great skill, professionalism and compassion. Then her career was interrupted. This is when Amyloidosis stepped into her life. And now Myeloma, too. The many years of study and preparation were more than the number of years that she practiced her profession in the ER. Oh, how she loves and misses her work and has earned the respect of patients and colleagues!

Her mom .. that’s me .. always knew that her firstborn child, a daughter, was a matchless, one-of-a-kinder. Tracy has a personality that stands out and shines brightly! Yet she seems to be in a class of her own when it comes to misfortune, too. The rarest of the rare diseases and no stem cell donor because of her uncommon ancestry.

In my mother’s heart, I know that a life saving donor can be found for my “matchless” daughter. You can help. You can help Tracy and you can help many others of any and all backgrounds by signing up to be a donor. It is easy to enroll with the National Marrow Registry. If you are 18-44 years of age, just go to BE THE MATCH (bethematch.org), sign up and receive a free cheek swab kit by mail. Parents of my generation, please, please encourage your young adult kids to sign up and be there for someone in need. Also, kindly share this message with family, friends, organizations, universities and especially in the Fil-Am community.

Be a matchmaker, a marrow mate, a life saver by giving something so precious that only YOU can give ~~ your healthy stem cells ~~ to another who needs it!!

Kathryn Jalbuena

OK, so now what?

This post has been a long time coming.  I've been turning it over in my head for many, many months.  I'm not sure why I feel comfortable writing it now...maybe it's the approach of the holiday season, maybe it's the recent suicide of a former work colleague, maybe it's the knowledge that I'll have an empty nest in about 624 days (but who's counting), maybe it's the overwhelming sense of normalcy these days, maybe it's a combination of all of those.

When people ask me how I'm doing these days, or more specifically how my health is, I usually reply with, "It's pretty much back to normal.  I'm in remission, my damaged organs are recovering and I just have follow-up care until something changes."  And that's true physically.  Emotionally, it's a bit of a different story.

Emotionally, I look around and think, "OK, so now what?"  Many people fighting serious illnesses talk/write about "not being defined by their disease" but sometimes I think maybe I was defined by my fight.  Now that this round is over...OK, so now what?  I look around and see how much of my life these last two years has been focused on my health.  After that, it's been about supporting Claire in her school and sports activities.  Knowing the first is gone and the second soon will be..OK, so now what?

I don't really have any buddies in this area.   My two best friends are 350 and 2,000 miles away.  Yes, I have a lot of friends in this area and a really wide social circle.  But that expanse doesn't mean that I don't miss having a few close buddies.  You know...the ones who you know that every Friday night, you'll head out to have wings or who call you and say, "I'm watching a movie tonight,  Grab some wine and come over".  It's pretty much the same situation at work.  I'm just missing those 2-3 "go to" friends that you know if they're doing something, you're going to be a part of it.

I found that during my illness and recovery, I was suspended between these two poles in sort of a no-man's land.  I was the center of attention but on the periphery of action and interaction.  As I recovered, I got a lot of, "We need to catch up,  we'll have you over for dinner" but the invites never came.  Or, "We had this get together and we were going to invite you but we weren't sure if you were up to it."

Things weren't all that great before I got sick.  I was wrapped up in work and Claire's activities.  (Or maybe I was/am an a-hole.) Those things aren't as consuming as they once were.  I guess my experience has made me see some deficiencies in my current life.  Just like when I first got out of the hospital and spent a lot of time looking around the house at things that needed to be improved here, creating a lengthy "honey do" list, I've been developing my "Kathy do" list.  Unfortunately, there's not an entire industry with multiple store chains and TV networks devoted to my fixer upper.

There are times when I think I'm being petty and ungrateful.  I consider folks with my disease who would love to have this set of problems and I remind myself how fortunate I am to be alive and living a normal life.  But then I think, "Aren't these normal expectations all part of being normal?"  Except things aren't normal.

As you can see, I've got a lot to figure out.  Do I move back to Florida where I think I've got some buddies?  Do I try to build something here I've never really had in my almost 9 years of living here and if so, how?  Do I reset my expectations?  It's like an episode of "Love It or List It" for my social life.

I do know that I'll continue to try to get up every day knowing that if I'm alive and not incapacitated with illness or treatment, there's something God wants me to do.  That's where my focus has been and where it will continue to be.  Like so many challenges throughout this journey, I just need to do what God puts in front of me and trust that He'll work the rest of it out in just the right way, at just the right time.