There once was a girl from Nantucket …
Oh wait, scratch that – I think we all know where that’s headed 🙂
Got the sniffles once in a blue moona.
One morning she woke
And without any provoke,
Her muscles felt they’d been hit by a harpoona.
That never seemed to wane?
A mystery to all her docs
This was no simple case of pox.
Perhaps something exotic from the Ukraine?
Hell yes! Let’s make it real flawed!
A diagnosis they were seeking
But after surgery, she’s freaking!
Hematoma and numbness – OMG!
Eosinophilic Fasciitis – who’s ever heard of that?
A rare disorder to be sure
What’s the prognosis? Is there a cure?
Prednisone was her weapon in combat.
But instead of improving, her blood counts fled.
Another biopsy of her bone marrow
Through a needle that was NOT narrow!
Answers came back, the kind you dread.
Clearly, it was going to be an uphill climb.
She was moved to City of Hope –
More prepared to grapple with her scope.
Her marrow had failed and was not worth a dime.
Attempted to turn things around, enter a better phase.
But, alas, deeper and deeper she sank,
And let’s be frank,
There were no celebratory sashays.
No way in hell she’d allow life to be ceded!
She checked into room 6-0-1-1
Her family made sure she was not short on fun.
Games, activities, surprises FAR exceeded!
December 14’s here – on with the show!
Brother, Leason gave the ultimate gift
His marrow matched; she was no longer adrift
He’ll always be her life saving hero!
Todd showed up daily with surprise after surprise.
One day it was a shaved head to match her own,
The next it was a ‘J’ tat in her fave purple tone!
Each visit was styled from shoes to neckties!
Her blood counts went up and all were clappen.
After a 6-week stay, they sent her home
A sh*t ton of pills, sucky diet, and she could not roam.
All about beanies, Breaking Bad, and lots of nappen.
Beach walks, visitors, baths and chow mein!
A few hairs sprouted, things were looking up
Then Graft vs. Host set in – a real hiccup.
Rejection issues, more drugs, and more pain.
Still working through it, this recent mess
Hoping these symptoms would just f-ing regress
Rashes, cough, and sores on gums and lips
Be gone all of you – it hurts to eat chips.
GvH blows and adds to the stress!
Family and friends have pulled her through
She is very aware that things could be much worse
She’s learned what’s important and more importantly, what’s not
So f the rhyming for this verse 🙂
I want to thank everyone who is still supporting me! Everyday I hear from many of you, and it lifts me! I’m trying to keep my mind off the Graft vs. Host Disease by going on fun outings with my mom, meeting up with friends, going out to dinner with Todd, working on artsy fartsy projects, and keeping up with Rex’s adventures on Semester at Sea (just saw an Instagram of him flying in a contraption (hang glider? parasail?) over a beach on Crete with his tongue hanging out like a basset hound). This week I’m meeting with Dr. Fantastic to get his opinion of my GvH condition and to get AFBT – Another F-ing Blood Test.