Several years ago a member of the PRP Facebook Support Group posted that her PRP hubby would be spending his Christmas in a hospital. It made me think about Christmas 2012 — my first Christmas with PRP.
’Twas the night before Christmas, I remember it well.
There was no sign of “Merry” as I drew closer to hell.
My feet were encased with a leather-like skin
That cracked and bled where my real skin had been.
My scalp was a snow storm, a blizzard at least,
A savage attack by a titanic snow beast.
Some flakes were so big, they bounced and what’s more,
They formed giant drifts on my dark hardwood floors.
I remember the Christmas nine years ago,
When the Yuletide Spirit had a radiant glow.
But the following year, a shroud had descended,
And our family reunion plan was severely upended.
As their “Papa Bill” I glowed a bright red,
From the end of my toes to the face on my head.
I was “Tinker Bill” to my grandkids’ delight,
As my magical fairy dust spiraled in flight.
The children thought I was a holiday ploy.
To prompt a smile from three girls and a boy.
So I mustered a hearty “Ho Ho Ho”,
To disguise my pain so they would not know.
But to their parents, my kids, I was not at my best,
So they asked lots of questions — A “Papa Bill Test”.
By the time I was done THEY knew PRP,
And the challenges ahead for Heather and me.
At that very moment I felt terrible despair,
And thought that “next year” I might not even be there.
With a body consumed by a prickly heat,
From the scalp on my head to my swollen red feet.
But two weeks later my feet were all cleared;
The best they had been since the “Red Bastard” appeared.
By the very next Christmas, I could make the admission,
To those who cared: “I’m nearing remission.”
Looking back, the profound despair I felt on Christmas Day 2012 was but one day in a life of 74-1/2 years. I have come to learn from fellow PRP patients and their caregivers that PRP is a journey of unpredictable duration and intensity. My advice is simple:
Find friends with whom you can share your journey. Don’t walk alone when you can ride in a bus crowded with folks from the Land of Chat. We are a noisy bunch!
I have celebrated 74 Christmases. While my 66th Christmas was “A Christmas in Hell”, those that followed have been blessed with an ever-increasing number of grandchildren (Meg, Annie, Molly, Zack, Katarina, Luke and Finn).
Our Land of Chat is a Land of Hope, a Land of Travelers, a Land of Caring, and a Land of Sharing. Merry Christmas and Happy Holidays to one and all.
Bill McCue
Onset date: August 2012
Onset age: 66
Remission: April 2014
Duration: 20 months