Mid-late August 2013:
Have you noticed the initials….BMT, BK, GVHD….well, this is just the beginning. The scary part is when you understand what it all means and you are NOT a medical professional….you are just a Mom.
GVHD stands for Graft Vs. Host Disease. And Cory has it…a mild case considering, but he has it. His new marrow is attacking his body like it was a foreigner (shhhhh….it’s not supposed to know). The New SuperHeroes (immune system cells) are confused. They are in a new place and there are different things (likely because the match wasn’t exact) and this new immune system is recognizing the Very Body it’s in(a.k.a. Cory’s Body) as foreign, as Enemy, and is attacking.
This is two/three weeks since C-Day (transplant “Cell-Day”) and Cory’s skin is discolored and dry and itching. Every night I come, I slather him with Johnsons baby lotion (haven’t done that in 20+ years)…. His back and his arms and his neck and his face and his chest. He is weak. And really, really itchy. If I could type 15 “itchy’s”, I would. We bought him one of those wooden “itch-yourself” hands from Cracker Barrel. It’s his best buddy.
He slowly takes himself to the bathroom 2x a day and literally takes an 1.5 hour shower.
“What are you doing in there?” I call in because I’m making sure he’s still ok…and breathing….and upright.
“Peeling off my dry skin. It’s so uncomfortable. Can you please go buy me powder?”
I ask the nurse for powder. She will put the order in and it will come the next day. He needs it now. I tell him I will go to Walgreens (at 11 PM). He says, “Please bring Tums, too.” Tums. OK.
Clifton, OH, in Cincinnati, is not the place to be buying drugstore items at midnight. But I go….I look around, bolt from my car into the Walgreens. I find Bond Powder and multi-colored Tums. Does he really think this will help the nausea and vomiting more than what’s already prescribed to be flowing into his veins?? Even if there is the chance of psychological relief coming from a bottle of Tums, I will risk my life to get it for him. And I DO feel as though Im risking my life….
At the check out, I ask the officer at the front door (yes, there is an officer at the front door of the Walgreens with the barred windows in Clifton, Ohio….just saying, my instincts aren’t that far off)..
I say, “Will you please walk me to my car?” And he does. And I have Gold Bond Powder and Tums for my postcancerous, bonemarrowtranplant son, IN HAND. I feel a little like a super-hero myself as I close my door and “All-Lock” as fast as I can.
He is uncomfortable, and obsessed, and damn that skin…it’s definitely attacking his skin. It is literally peeling off, especially his toes and unmentionable places. Whole layers of dead skin just hanging there. And it itches and it hurts. And his eyes…they are super dry and hurt and blurry vision.
There is Acute GVHD and Chronic GVHD. The Acute is temporary…the new cells settle in in these first few months, and adapt and believe this Body is where they Belong. Then there is Chronic, where the cells never quite fit in….and it’s forever, the GVHD flare-ups and battles. But the patient IS alive, and IS living, and IS a Dad or a Mom or a Daughter or a Son…..and they smell and see and love and feel and touch and hug, but they continue to suffer and be treated for the GVHD—never quite 100% because of those stubborn foreign cells…..but, it sure beats the alternative.
Well, at this juncture, we don’t know if his GVHD is acute (which it probably is) or chronic. Before 100 days post-transplant is usually considered Acute, if symptoms occur after 100 days, it’s considered chronic, to fight and treat and flare up ongoing.
Cory is truly, just grateful to be alive, but isn’t afraid to say, “This part sucks.”, if it was warranted….and GVHD does suck. It can attack any organ. (Just through listening and learning and googling, I’ve picked up that the digestive system being attacked is bad,bad news.) So far, it’s just Skin and Eyes for Cory, so we are good. whew…Just a couple of scuffles.
He’s got this…..right??
I come in the room and he is half-asleep and I place the Gold-Bond and Tums on his food tray full of uneaten food that he has wishfully ordered and can’t eat.
As I unbag it and squeeze the items in between his melted milkshake and sandwich plate, and say, “Here’s the powder and Tums…is this what you wanted?”
“Yes”, he says weakly, and is finally finding rest as his eyes slowly open and close. Some meds must’ve kicked in. I’m grateful.
As I turn around to head to the chair/bed I’ll be sleeping on, I hear,
Hearing that chokes me up….If only I could really do something.
“You’re welcome, buddy. Wake me up if you need something in the night.”
“mmmm…hmmmm.” he says.