Relatively Easy

The last two weeks have been a continuous stream of good news and confirmation of how well I've made it through the treatment of and recovery from this disease.  My nephrologist telling me last week that I "breezed through the transplant," my gastroenterologist telling me that not only is my liver size reducing, its also softening which means its getting closer to normal.

The latest good news that I've shared on Facebook that I had my abdominal ultrasound on Wednesday for a post-transplant re-staging of my disease. It showed that in the 9 months since the transplant, my liver has reduced 5.4 cm in size from 24 cm to 18.6 cm. That meets the defined criteria for organ response. My kidneys were also effected by the Amyloidosis and I've achieved organ response there, also.

Hematologic response--check complete
Liver response--check greater than 2 cm reduction
Kidney response--check greater than 50% reduction in 24-hour urine protein

Here's the picture from an article in the journal of the American Society of Hematology entitled "What do I need to know about immunoglobulin light chain (AL) amyloidosis?" authored by three Mayo physicians including Dr. Gertz who I saw for my second opinion.

So, I've made it across the entire response continuum and for that I am so thankful--thankful to God for His guidance and faithfulness, thankful I pushed for a diagnosis, thankful to my medical team and thankful for the support of my family and friends.  I know of so many amyloidosis patients whose disease went undiagnosed and untreated/ineffectively treated for an extended period of time and suffered irreparable damage to a combination of their heart, kidneys, liver, nerves and/or skin.  They are facing limited strength and endurance due to heart damage, regular dialysis and edema due to kidney damage; ongoing abdominal bloating and digestive problems due to liver damage; painful neuropathy, loss of balance, dangerously low blood pressure due to nerve damage; and/or debilitating pain when doing something as simple as talking or smiling due to amyloids in their soft tissue.  I don't have any of that.  Yes, I have some clinical signs from the damage caused by the disease but they don't impact my ability to live the life I had before.  Yes, I have a ~96% chance of relapse but overall survival in complete response SCT patients is averaging 10 years now and getting longer every day.  I am healthy and disease free until Dr. Efebera presents me with test results and her assessment that I have relapsed.

I've been listening to a new to me artist named Jason Isbell that a friend (music identifier extraordinaire) recommended to me.  He knows I like progressive rock and alt country artists who write poetic lyrics wrapped in simple solid music--Ryan Adams, Josh Ritter, Delta Spirit, Old 97s, The Avett Brothers (still mad I missed their show in May due to my SCT recovery).  Andy Staples, a sportswriter I follow on Twitter and fellow UF Journalism school grad, called Isbell, "A storyteller who follows Strunk and White's rule 17.  That rule says, "Omit needless words." 

Isbell has a song called "Relatively Easy" which has become my favorite song recently.  I know one of the main reasons is because of all the good news I've received compared to others I know fighting Amyloidosis.  I almost feel a little guilty...like that person who survives a plane crash and wonders "Why me?"

Here's a link to the song-- http://youtu.be/NIQ1NHa0g6A

Here are the lyrics that really impact me--

You should know compared
To people on a global scale
Our kind has had it relatively easy
And here with you there's always
Something to look forward to
Our angry heart beats relatively easy 

I've always felt this way about life in America.  My work with Food For The Poor and my travels to work with the destitute poor in Haiti and Jamaica gave me a broader perspective of what prosperity really is.  I met a parent whose child died for want of $2 in antibiotics.  If I lived in any country other than a highly-developed first world country--US, Canada, Western Europe, Japan--I'd be looking at a much more grave prognosis.  Because of the care I've received and the care that will be available to me in the future, I have a lot to look forward to.  I think about all the support from Al and his work and dedication to get me back to normal.  So yes, here with Al, there are lots of things to look forward.  Our hearts that were angry when I was first diagnosed now beat relatively easy.

I lost a good friend
Christmas time when folks go off the deep end
His woman took the kids and he took klonopin
Enough to kill a man of twice his size 

Not for me to understand
Remember him when he was still a proud man
A vandals smile a baseball in his right hand
Nothing but the blue sky in his eye

 While I never even considered suicide, I can understand the despair over the future that could make a reasonably emotionally healthy person consider it.  You can become hopeless when who you are seems so far from the person you've always considered yourself to be and you don't see a clear path to become the person you believe you are.  That's what those two verses say to me.  I talked about that feeling in this post--Before and After Part 2  This was in July when I wasn't sure about the hematologic response and hadn't seen any organ response either.  I looked back at the person I was at Amy's wedding--not just the physical state, but also the emotional state--and didn't think I'd ever get back to a reasonable facsimile of that person.

Still compared to those
A stones throw away from you
Our lives have both been relatively easy
Take the year and make a break
There ain't that much at stake
The answers could be relatively easy

I think about the people I know who are fighting much harder battles with this disease than I am and face a much longer road to normal, if that's even possible.  I think about my friend Robyn who died in September after a four-year battle with Pancreatic Cancer.  I'm coming up on my one-year anniversary of my diagnosis.  I did take a year, there was a lot at stake, but, yes the answers were relatively easy.  As Dr. Parikh said I've breezed through this.

So, I'll sit here enjoy a post-workweek glass of red wine and bask in all the good news I've received and contemplate Relatively Easy.

Good Progress

I had appointments with my gastroenterologist and nephrologist on Wednesday.  I call it my day with the gists.  I really like both of these physicians and they're about as different as possible on the surface.  But what they do share is a deep knowledge of their medical science with equal portions of compassion, a bias for action and a willingness to educate me...which are very important to me.

Dr. Levin, my gastroenterologist, is about 70 and a focused scientist who seems to have a gruff exterior but has a heart of gold and a mind that can quickly organize data.  He reminds me of that grumpy uncle who is somewhat intimidating when you first encounter him but is quietly caring and figures out all the brain teasers.  When I was continuing to have issues with my fluid retention in the hospital and felt like the transplant physician, Dr. Levin and my nephrologist couldn't develop an approach, I asked Dr. Levin to step in and get things moving and he did.  He was also the one to diagnose me.  For that, I will be forever grateful.  During my first appointment with him, he asked if I was related to a physician named David Koontz.  I told him David is my brother in law and Dr. Levin mentioned that he trained David when David was a resident at Riverside Hospital about 25 years ago.  It shows me he's a man who cares enough about people to commit them to memory.

Dr. Parikh, my nephrologist, is probably in his early to mid 30s and is very eager and engaging.  I wrote about my first encounter with Dr. Parikh in this post.  He answers all of my questions and provides context and the reasons why lab values may be changing.  When I notice a change and express concern, he doesn't just tell me "that's normal, don't worry about it"  he tells me why its normal, what is driving the change and why I don't need to worry about it.  So often when questioning any technical expert, I'm reminded of the quote by Einstein that says "If you can't explain it simply enough, you don't understand it."  Dr. Parikh always explains things simply enough so I can understand them.   When we were talking about changing some medication levels over the summer and I wasn't ready to change them as much as he was, he listened to my concerns and said we would try my course of action first.  To me, that shows a great deal of confidence in his ability to manage my condition since he didn't insist on his course as the only course.

On Wednesday, Dr. Levin told me that he could feel that my liver size has reduced.  I felt that but his assessment validated that it wasn't just wishful thinking on my part.  He also said my liver is no longer rock hard.  Liver hardness < Rock  That's a nice equation.  I was reading the proceedings of the International Symposium on Amyloidosis and read this interesting information in the history section.

Thomas Bartholin, discoverer of the lymphatic system in humans, described in his Historiarum Anatomicarum Rariorum the autopsy of a female whose spleen was so hard that it could scarcely be cut with a knife.  He stated that incision of the spleen produced a sound like that of the cutting of spongy timbers. This autopsy report was included among the 3000 collected in Theophili Boneti’s Sepulchretum Sive Anatomia Practica which was published in 1679.

That type of organ hardness is what I've imagined my liver is like.  Nice to know Dr. Levin feels that its softening up.  Goodbye spongy timbers!  (When I read "spongy timbers" I thought that would be a good name for a pirate ship captained by Spongebob Squarepants.)

Dr. Parikh said that my kidney function is normal except for an excessive amount of protein in my urine.  The amyloids have pried open the filters in my kidneys.  Substances that are too large to pass from the blood into the urine through the normal size filter will go through in an amyloid damaged kidney.  Protein that should stay in my blood leaks into my urine through the filters that have been pried open.  He said that's improved thus far and he expects it to continue improving.

In Amyloidosis, they measure treatment response in hematologic response (are you no longer producing the substances that create the amyloids) and organ response (are the organs damaged by the amyloids recovering.)  My doctor said that organ response can take up to three years to complete and in the studies I read, that seems to be the standard period of time they look for changes.

I had a complete hematologic response and as long as my immunoglobulin free light chains are normal, that response is continuing.  There are defined standards to determine organ response.

For the liver, that criteria is ≥50% decrease in an initially elevated alkaline phosphatase level, or decrease in liver size by at least 2 cm.  My alk phos level has reduced by 33% in 9 months and I still have 27 months within which improvement could occur.  I go next week for an ultrasound to measure my liver.  Last time they measured it, it was 24cm.  22cm next week shows organ response in the liver.  Now, bear in mind that normal for someone my height is about 8cm. It reminds me of that scene in the Grinch where his heart grew 3 sizes that day...except for me its my liver and it wasn't undersized to begin with, as far as I know.  But I sure got the 3 sizes thing.

For the kidneys, response criteria is 50% reduction in 24-hour urine protein excretion (at least 0.5 g/day) without worsening of creatinine or creatinine clearance by 25% over baseline.  At my appointment in December, my 24-hour protein had reduced by 48%.  So close but I'm going to round up.  I'm sure I'll be officially in the response criteria when they measure it again, probably in April.

So, more good news and good progress.  The bad thing about doing so well is that I'm now on 6 month follow-up with Dr. Levin and Dr. Parikh.  I'm really going to miss seeing them but since it means that I'm getting better, then sorry guys, we're going to have to get comfortable with a long distance relationship (time-wise, at least.)  It sure beats the alternative of being in a health state where they are managing an active disease process.

So, docs, see you in July.  Hope you don't miss me too much!

Hospital Memories

This benediction showed up on my Facebook feed last week:

In the quiet of this place, in the dark of the night, I wait and watch. The senses of my heart are awake to you. In the stillness of my soul, I search in the silence of my spirit, O God. (Celtic Benediction)

It reminded me of some of the lonely, scary nights I had in the hospital.  The days were fine because they were filled with a lot of people and activity.  Alan was with me most days from 8 am until 2 pm and then back with Claire between 7 and 9 pm.  Amy came for a few hours every night, as well. What a loving sacrifice from her.  She had only been married for 6 months and would spend her days at her job at Grant Hospital and her evenings with me at The James or Dodd Hall.   But, after 11pm when things slowed down in the hospital, it was me, my thoughts, my music, my prayers and God.

I would stream music from my phone to a bluetooth speaker I brought with me and during some of the nights when I couldn't sleep well, which was most nights between about April 15 and April 28.  I had a playlist of my favorite hymns that was my go to choice.

• It Is Well With My Soul
• A Mighty Fortress Is Our God
• Come Thou Fount of Every Blessing
• Great Is Thy Faithfulness
• The Old Rugged Cross
• How Great Thou Art

These are songs I remember my grandfather singing and have sung a lot myself in church and at Cursillos.  They always took me to a happier time and reminded me who was still in charge.

"It Is Well With My Soul" was one of the first hymns that came into my mind after my diagnosis.  As I explained in this blog post, Jesus told me during my morning prayer the very next morning after my diagnosis that "He's got this" and that promise has held true since that moment.  I've learned that faith isn't digital ie it's on or it's off.  It's much more variable than that.  Sometimes it was full power, total faith, no room for doubt.  But sometimes it was a really weak signal with lots of doubt and fear mixed in.  And, I think God's OK with that as long as I keep seeking Him, no matter how frail my efforts may be.

Many nights I would think of the story of the Cherokee right of passage where the young man is taken into the forest at sundown by his father, blindfolded and left sitting on a stump until the sun rises.  He experiences many fears through the night and when he removes the blindfold in the morning, he realizes his father has been sitting next to him all night.  You can read more about it here.  I felt that way during many scary nights when I was in so much pain and fearful about my recovery.  I knew God was sitting there next to me.  But one night, I started thinking about everyone who was praying for me, thinking about me and sending me positive vibes.  I pictured them as a ring around me on that stump helping to keep anything negative or harmful away from me.  I held on to that image many times through my hospitalization and recovery.

Another memory I have is from a line in "Come Thou Fount of Every Blessing".  There's a line that says--"here's my heart, O take and seal it, seal it for thy courts above."  I remember one night I was pretty doped up on morphine but still in a lot of pain.  When I heard that line I said, "Hey God, while you're in there doing that heart sealing thing, could you maybe work on my liver, kidneys and abdominal swelling?  You know, since you'll have the hood up."  That made me laugh at myself and gave me a little glimmer of hope that I could make it through this with my unique sense of humor still in tact.

Chemo and pain can alter many things but I'm glad my spirit..and sense of humor...have recovered well.

Pelotonia!

Since 2008, Columbus has had a bike ride designed to raise funds for cancer research called Pelotonia.  It's raised more than $50 million since it started.  I've known several folks who have done it and have contemplated riding in the past but....well, you know how it goes..lots of excuses.

I have a few colleagues at work who have ridden and vowed that this year, I would ride.  I've done a fair amount of cycling in the past.  The only organized ride I've been on was the 210-mile, 2-day Tour of the Scioto River Valley...during which I crashed 23 miles from the finish line and broke my arm but completed the ride anyway.  Yes, I really wanted that finisher's certificate.  You can read all the gory details here.)

Back in August, I went on a real ride with Al.  Now, I had been doing some rehab rides on Claire's cruiser bike in June and July as part of Drill Sergeant Al's Convalescence Home (service mark "You'll FEEL The Love!) but August was the only time I've been on my bike since fall of 2012.  I was able to do 9.5 miles at an average rate 12.4 mph.  OK, not exactly 100-mile Pelotonia worthy but that was four months after my stem cell transplant. I'm hoping I'll do a lot better the next time I get on the bike.

Pelotonia has routes you can ride that range from 25 miles to 180 miles.  I've decided I'm going to do the 100-mile route.  I've needed a challenge to get me back to the physical condition I was in before I got ill and I think this will do it.  I'm starting to workout with more strength and endurance guessing I'm back to about 75% of my recent peak.  I'll get the bike on the trainer in the basement and will have a chance to catch up on my Netflix queue since I'll be spending 60-90 minutes down there several times each week.

While the funding for cancer research is important, this ride symbolizes so much more for me...a way to show my strength has returned and to show thanks for all who have helped me along the way.  

You'll see a lot about the ride between now and when its held in August. Please consider supporting my ride.  Click here to donate.

A Fun Complication

I've been looking for hairstyles now that my hair is starting to grow in. A lot of people tell me to leave it really short but for me, that will just be a reminder of when I was sick so I need a style that's more like something I'd normally wear.

When looking for hairstyles in the past, I'd look to Mariska Hargitay (you know, Olivia Benson on Law & Order).  I think Amy came up with the original suggestion for me.  She usually keeps her hair somewhat short, has a face shaped similarly to mine and has fine, thin hair like me...or, rather, like I used to have. 

Claire was watching an old episode of Law & Order the other day and said this hairstyle would look good on me. 

I agreed and, in the past, could have easily styled my hair like that.  However, as happens with many people, the chemo has changed the structure of my hair and it's now pretty wavy, maybe even curly. Any wave or volume in my hair in the past required liberal use of heat and product. Not now.  I tried to style my hair like that on Friday and Al said I looked like Elvis due to the pompadour-esque volume on top. This morning, I put some gel in it hoping to tame it a bit but the wave will not be tamed.

Yeah, not even in the vicinity. I'm hoping to see my hairstylist next week but I don't think she's got enough magic to get me back to Mariska. 

Guess I'll need to find someone new for hairstyle inspiration.  Just not sure who.