I guess I’m just a stubborn old mule!
I come by it naturally. My dad Walt was as stubborn as they came, until my sister Rita came along and redefined the term. Nothing stopped her, nothing intimidated her – no fear, she stood her ground. Yet always with grace and a smile. Damn she was good. I miss her. She would do anything for anyone, just ask and it was done. Like the Tracy Lawrence song “You Find Out Who Your Friends Are”, she was your friend. But, she always did it her way, and she could take on anyone. Ask my two older boys about Rita, driving to O.U. football games on a Saturday morning, and then ask, no BEG for details about those Red River Rivalry trips. Bennett and Jon, you better remember those stories and pass them on!
So where does this lead? Well as you know I forged my own slightly ( highly? ) risky path by plummeting early and scaring the hell out of the doctor, AND me. Now my little stubborn ass is in gear again.
But what to my wandering eyes should appear?
Why the good Dr. F. smiling ear to ear!
And with note pad in hand, he showed me news,
My stem cells, my stem cells, my stem cells infused!
I was to begin the engraftment period Friday at the earliest, more likely Saturday. But I want to do things my own way, and so, I DID!
The energy I had hoped would accompany such news was fleeting. After waking at 5:30 a.m. and spending a few hours of alertness answering email responses, I wore out – nap time. Damn, I feel like a five year old in Kindergarten, minus the blue mat. And I took a toddler like tumble today. I leaned over to put something in my drawer and just kept going. No harm, my hands caught me as I hit the floor, and I pulled the nurses cord for help getting up. I have developed Mucositis in my mouth which was described in yesterday’s post. Nasty sores in the mouth and painful teeth and jaw bone. They have strengthened my gargle juice and the IV anti-biotic that began last night should help take care of it, but it is not fun!
Other news from Box 329 – some television highlights which delighted me.
First was a Visa commercial a few days ago, produced in the United States. It was in the Russian language, but showed three American ice hockey players, with the U.S.A. blurred out. Classic!
And then perhaps the best, “The Wizard of Oz” was on! I am not really a fan of the movie as it has been telecast too many times over the years. But to sit here in Moscow, seeing Dorothy, the witch, the Great Oz and the flying monkeys made my heart soar. Yes, it was in Russian – all but the songs! English all the way. And those flying monkeys looked pretty Russian-esq to me – I do love the flying monkeys. That was a great memory made.
So I sit here in my bed on a Thursday afternoon, I had to look at my wall calendar to know what day it was, with bags four, five, six, and seven of fluids flowing. Want some more good news??? I know you do! In the months prior to coming to Moscow for HSCT, my speech had deteriorated so that I could not carry on a “deliberate” conversation. By that I mean I could easily chit chat…the weather, how are you…you know, the basic stuff that is etched in our brains as rote language.
But for some six months, I could not converse. If you asked a question I struggled to get the words out. Oh they were there in my brain, on the right side. I knew what I wanted to say, but they could not cross the Corpus Callosum to the left side of the brain and exit my mouth. I would become so frustrated at times, knowing exactly what I wanted to say, but no words. I even had a few fits of slamming my fist on a table or chair. Not dignified, I know, but I was frustrated to tears. No ordering from menus, I would point. Wait staff was very kind as I stuttered Diet “CCCCC” and could not get the “oke” part out. They nodded, said Diet Coke? And I smiled. And beer was “BBBBB” and then point at my Tecate Light!
Cross you fingers, but….
I have been hesitant to jinx any progress, but for a full week now, I CAN SPEAK! Tired days I still stammer and word search only a tiny bit, but I can carry on a conversation with Dr. Fedorenko as if nothing had ever been wrong! He is so very pleased and grins from ear to ear (under his mask), but has warned that from time to time over the next year it could re-occur in very short phases due to long lasting chemotherapy effects. But he assures me as it was my first symptom to disappear, it will eventually disappear forever.
The fourth phase of transplantation is the engraftment phase. During this phase, the patient begins to experience the healing of the damaged mucosa (what’s tearing up my mouth – please heal), resolution of bacterial infections. The lymphocyte function still remains highly compromised at this time due to immuno-suppressive medications and the delayed process of immune reconstitution. This creates an immunologic gap that allows reactivation of viral infections, in addition, opportunistic microscopic and fungal infections can occur.