What Could Have Been

As many of you know, I'm a big fan of a music artist named Jason Isbell.  His album, Southeastern, was released about the time I got out of the hospital in 2013 following my stem cell transplant.  My son in law, Sean, told me about it and I was hooked from the first playing.  Since then, I've listened to Southeastern about 98,736,434 times and his other albums about 82,347 times.  He grew up in Alabama and his Southern aesthetic really resonates with me, he's a great song writer (John Mayer called him the greatest lyricist of our generation) and he's a great guitar player.  Plus, he's had more than his fair share of struggles.

I saw him perform at the legendary Ryman Auditorium in Nashville last October and it was the first time he performed Southeastern in its entirety...coincidence? I think not.  I also saw him in Columbus in February.

He released a new album last month and I've been dutifully listening to it.  There are many, many songs that I love but one in particular, at this time, in my mood, is really effecting me.  

This time of year always reminds me of my mom.  Her birthday is July 9 and the date of her death is September 8.  So, I think of her often in August.  He has a song called "Hudson Commodore" that tells the story of a southern woman who dreams of a better life.  

The woman in the song sounds really strong and independent and is able to build a life for herself and her children.

"Time between the glory days and the golden years  

She did the work of 20 able men  

Sent Tommy off to school to be an engineer 

And Sarah went to try out all the sins  

She took to taking tea out in the Belvedere  

Bourbon in the evenings by the fire  

As if the Great Depression never made it here  

As if she had defeated her desire 

She just wanted to ride in a Delahaye 135  

She just wanted to ride in a Hudson Commodore  

No need to worry anymore"

This is the story of what my mom's life could have been like if she had grown up in a different environment.  Her dad scraped an existence out of carpet and tile work in Jacksonville in the 30s and then Tallahassee from the 40s through the 70s.  My mom, who was born in 1930, would go to the movies and watch the glamorous lifestyles depicted in those movies and dream of something better.

This is a photo of the car that Isbell sings about in the song that my mom might have seen when she 10 years old.  How glamorous is that to the daughter of a blue collar worker struggling to provide for his family?

Here's a picture of her sometime around 1950.  Can't you see her in some version of that car?

Unfortunately, my mom's mom never encouraged her to build that life for herself.  She was in the age when a man provided that for you.  Plus, my grandmother was so fearful and insecure and that attitude permeated my mom.  A woman couldn't provide a good life for herself.  My mom was so smart and resourceful that, with a little support and encouragement, she could have built that life for herself.  But, she sold herself, and her dreams, short.

But what she did do, was marry someone who could help her rise above her upbringing.  So, despite the limitations of her upbringing, my mom taught me to believe in something better.  Her younger sister also gave me a glimpse of how a strong woman lived her life after she lost her first husband to a Naval aviation accident and her second husband to leukemia.  And my dad taught me that, no matter how difficult the problem, you can solve it with enough work and resourcefulness.  Wow, has that served me over the last few years.

Mom, I'm sorry you couldn't achieve all that you were capable, but I thank you for giving me the foundation that allowed me to do that.  As I listened to the song and thought about my mom, I recognized that my mom's insecurity and underachievement is why I am so passionate about mentoring women to be strong and confident so they can achieve their potential--for my daughters, my friends and my colleagues.

If you're someone I've helped along the way, thank my mom.  I think about how much it hurt when I lost my mom, I think about my disease and I think about my girls.  I want to keep them from feeling that for as long as possible.

I go for a check-up next week.  It's always a time of underlying anxiety but I'll continue on trying to do what Amy said, "Live the life God has given me" and make lemonade of the lemons while I'm at it.

And, as Jason says, no need to worry anymore.

"A doctor then a lawyer then a Roosevelt 

Tried to take her underneath their wing    

She was in her 20's in the Bible Belt 

Before she knew she didn't need a thing 

She didn't need their pity on a single girl 

She didn't need their help to raise the brood 

She wouldn't be returning to her daddies world 

She didn't want a better attitude"

https://youtu.be/-vF7W0BawO8

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.