Mick McKellar Update--Day +30
Chilly, bright snowy afternoon light illuminates my trusty old Dell laptop (accent on old), and I am wondering at reaching day 30 in my new life, my second chance for which I owe my brother so much. A report that his recent surgery was successful brightened my day.
My Bactrim testing continues -- so far -- no reaction. This is good news. Tomorrow is a "busy" day with lots of blood testing and discussions with doctors, coordinators, and even a pharmacy representative.
Deathly mundane...
Odd, but the best way I can describe my situation is deathly mundane. The battle is with small, even insignificant mistakes. They have created a new immune system for me, but it is so very fragile. They watch closely for anomalies, often just a few points off normal for certain blood chemicals, and rush to correct the numbers. A small fever (100.3 degrees) would require a 911 call and a quick trip to the hospital. Most of my meds form a defensive shield to prevent infections, pneumonia, and organ failure problems.
Yet, I could screw it up so easily, by forgetting to wear my Darth Mick mask, by not washing my hands completely after being in any public area, by ignoring or not reporting small changes. I can tell you that public restrooms were a nightmare before this, and now I have to plan every move as though the restroom was alive and trying to attack me. Now it really is all about the small stuff...and the small stuff can take you out in a matter of hours.
I have not accustomed myself to being so fragile. Anyone who has had major surgery knows the fatigue I battle every day. My body is working overtime to heal massive damage and deal with huge changes, so most of my energy goes there. I steal some for things like walking, talking, and writing messages, but the consequences always come...in the form of extreme tiredness and inability to focus on tasks, like reading and writing.
It always feels like I am losing the battle, by my doctors assure me I am doing well. If you could see me, shuffling down the halls at Mayo Clinic -- a large frame with frumpy clothes hanging loosely all about, concentrating on each and every step, and occasionally stumbling along -- you might wonder. Just the remnants of an old man being lead about by his wife?
Not really. I am simply fighting a million tiny battles every minute of every day. I have no energy to spare for striding about or worrying about how baggy my clothes have become. There is fire inside and it is fueled by my desire to live and the love and support of my friends. (I eat some food too, but not much.)
You see, each step down the hall or up a stairway is a battle won. Each time I successfully remember my instructions and medications is a battle won. Each and every one of these updates is a battle won.
Each new day is a gift and I try not to waste a minute. Your cards, letters, e-mails, and calls are a blessing and a joy. Your prayers and good thoughts are truly a life-line for us.
I know it sounds like kvetching and complaining, but I believe folks need to know how much of the fight is mundane and nearly invisible and constant. However, I have survived 30 of my first hundred days -- the most critical hundred days of my new life.
I feel pretty good about that.
Thanks for your "pieces of home" and for your prayers.
God Bless you all,
Mick