murphyormel

wacky reflections from a nutcracker wannabe

Category: Mizzou

Be very clear, ALS, we have Pocket Larry’s back.

A short acronym. A difficult enunciation. A devastating disease.

And today there is no cure.

Thing is, ALS, Larry’s friends and family are not ok with this disease. We want you stopped. And so an energetic and intense support network is in place to see that Larry’s impact on the world of ALS is not just a fight. It is a growing campaign that in fact mirrors Larry’s own uniqueness.  Love, spirit, prayer, kindness, generosity, silliness, strength, a dad’s wisdom, and some bad-ass marketing, public relations and merchandising talent!

Get ready, ALS, as Larry’s squad of support….throws the chair at you (http://webstl.alsa.org/goto/walk4larry), outruns you 12 times over (half-marathons, no less)**, and ensures folks across all social media platforms know we have his back.

I was lucky enough to have Larry as a senior supervisor roughly five years ago. He smiled at me in that first week, and I knew I had wisdom awaiting me. He called us “Mishpocha”, meaning family in Yiddish, and I would venture I wasn’t the only one who knew his sincerity in that word. He could be overtly stern or even powerfully silent, but I do not recall a time when there wasn’t a follow-up about what lesson could be learned. He was always however quick to compliment and praise when he saw hard work and dedication, and he never missed a teaching moment.

Wisdom simply follows this wonderful man.  And as such, people choose to follow him.

When my cancer diagnosis came as a surprise one year after knowing Larry, I started this blog. Initially, it was just easier to tell the story one time to 100+ people, rather than 1:1, 100 times. In week one; however, Larry signed on to join my journey via the blog, and sent me private notes, prayers and love along the way….it’s been four years, and we no longer work in the same place, but I am pretty certain there are NO more than 10 people in this whole world that have read every single one of my 65+ posts.  I suspect Larry is one of those 10.

I am one person in a sea of people he has touched. I can’t imagine a finer mentor and adopted grandpa and/or dad than Larry is to many like me. Likely, many of us not even knowing he was mentoring so many of us at the same time. Likely, he not knowing how many of us saw him as such.

You are a gift, my friend. Taking a pocket-size version of you on a journey these last 10 days has been an honor. Cheers to raising awareness, funds and a cure.

So again, I repeat.  Be clear, ALS!  Pocket Larry is indeed an original, and we have his back.

love and light,

Mel

On June 27, 2015 the St. Louis Walk to Defeat ALS is being held in Forest Park. Please join the team to support our friend, Larry Tyler.

#PocketLarry #outrunningALS #ALSWalkSTL

https://www.facebook.com/groups/walk4larry/

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neuro-degenerative disease that affects nerve cells in the brain and the spinal cord.

A-myo-trophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “Trophic” means nourishment-“No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region.*

* http://www.alsa.org/about-als/what-is-als.html

** https://www.facebook.com/outrunningALS?fref=ts, outrunningals.com

It’s radioactive Friday. Iodine tastes better than a pre-colonoscopy beverage.

FB, Twitter and the email world have shown me love and healing I never dreamed.  I wish I could hug Steve Jobs and that Zuckerberg dude directly.  Wow- thank you to the now hundreds of notes and stories, prayers and eHugs that have come my way.  And check out the jpgs at the end of this post..priceless….

I am officially radioactive but no superpowers yet.  Go to your window and look for the glow.  It might be an early Mardi Gras bead being thrown high in the air of STL parties, but it could just be me. (They said superpowers take a few weeks to kick in. At that point, look for a pink sparkle cape and a big smile.)

Today was the (first) treatment.  It’s called radioiodine therapy*, and it is specifically used to treat Thyroid Cancer.  The anxiety is much worse than the actual beverage.  It’s small and doesn’t taste much more than a little aluminum foil mixed with warm tap water that has been sitting on the kitchen sink too long.  So, really, in the big picture, not a big deal and oh sooooo much better than that which you drink before a colonoscopy.

I love however that the nurse in the room puts on all these clothing protectors and big rubber gloves, but they put a small white paper cloth over my chest (with tape in the back no less) and I sit in my skinny jeans and pink sweater waiting to start.  Not even glasses. Seriously?  Oh well, I guess drinking it is much worse than losing a pair of my favorite Dansko shoes.

Course, we are talking about radiation in a contained lead package that has to be ordered from another facility and isn’t housed in the hospital for safety reasons. Literally. They have to order it once the patient has the consultation to ensure they will go through with it because it is so expensive and well, you know…radioactive.

They also actually measure my radioactivity before I leave AND after I set off an actual Geiger counter. For real! She takes out a human size ruler, stands far away, students are watching, a loud buzzer is going off, and they are watching a Geiger counter score the success of the treatment in my body. Freak’n science, incredible! (Mr. Gattung at OTHS would be so proud of me. And I only remembered his “vette” (meaning chevet). I should really get that A now.) (Thank goodness my brother, HJ, is a PhD radiochemist to explain what I ingested to my parents in a way that doesn’t scare more than necessary.)

Regardless, we go back Tuesday for a total body scan to determine if the tumors have spread beyond the right (and to my surprise, also left) thyroid lobe.  All were in fact papillary so if “you are going to have thyroid cancer, this is the best you can have”.  Comforting.

I will know partial results after that scan and on that day.  There will be blood work in six weeks and six months, plus any additional treatments pending next Tuesday’s total body scan, meaning more scans every one to five years for the rest of my life depending on what we find.

This on top of my every three-year colonoscopy.  Bazinga!

MU alum is kicking cancer's ass!

! 

* http://en.wikipedia.org/wiki/Iodine-131#Medical_and_pharmaceutical_uses

** MU Live Strong logo…http://instagr.am/p/mWfOC/

%d bloggers like this: