Murphy's Law

Murphy's Law states that if there is anything bad that can possibly happen.... it will.

I was thinking about that in the middle of the night last night. I have been getting crazy about being sent back to Iowa City for Mac's follow up Dr. appointments. One problem has been that the Ia. City Dr.s never give us ANY information. All we hear is either "This is serious" or "You look wonderful!" This is not of any great use to me. It isn't medical data. It never tells me where we are in the journey. Is the GVH almost gone? Is it still problematic. Is there any indication of the GVH affecting organs? I don't know. They apparently don't want me to know.

A letter from Dr. Hiatt indicated that Mac might continue to be stuck with Iowa City for YEARS!!! This just causes me rage. I can't deal with being kept in the dark and guessing how our lives will continue for only God knows how long. What little Dr. Hiatt has said made me think that Iowa City pulled GVH overall fatality numbers and scared him. Dr, Hiatt running scared has made me angrier that I have obviously had information with held.

I will be turning to Murphy's Law for guidance. I will plan for the very worst that could possibly happen. I will plan every bit of detail on how I can possibly hold on to my home, my dreams, being close to my grand kids .... surviving.

I just have to get over being pissed off first.

Louie

Where The Hell Is Andy Hardy?!

The Andy Hardy films with Mickey Rooney and Judy Garland were pretty much crap, but there is something about the concept that I admire. They were problem solvers. Something goes wrong or the town is in need and you could count on Andy Hardy to shout out to his cohorts, " Let's put on a show!!" Every body would join in, "What a great idea!" A stage would be made of something scrounged up by the "kids" and a suitable backdrop would be created. There would be singing and dancing, money would be raised and yet another wacky crisis would be averted.

I have stated before that I am not big on the positive attitude thing. Life takes more then an attitude. You have to put some legs under whatever "positive" work you are trying to achieve. It's easier to get those legs if you have a few Andy Hardys in your life.

I don't have an Andy Hardy. I have people who stand around and say stuff like, "What do you want to do that for?".... "Don't you think you have other stuff to worry about now?"...."I wouldn't want to be responsible for that"

Yesterday, we saw Mac's Dr. This was his regular oncologist. He doesn't want to be responsible for Mac as he still has GVH. However the Iowa City Dr. does nothing to treat the GVH. We simply continue and wait and see how he looks next month... and next month... and next month... and next month.

It is a new year and the next visit to Iowa City will cause us to have to meet a deductible again. That's a thousand .... a thousand that we don't have. Then there is the gas to get there and back. That's another eighty bucks which we also don't have.

I don't need another dumb ass to tell me this is just the way it is and there is nothing we can do about it. I need an Andy Hardy to ride shotgun for me. I need to find a way to change this.

Louie

Yet More Doctors

So, at the last minute the referral to see yet another new Dr. was approved by the insurance company. We were up and out in the dark. Got there in time to have to do a run down to the oncology office for an extra set of labs. Because there is nothing like squeezing in one more thing to make somebody else happy. (Yes, I'm being sarcastic.) Luckily, I ran into one of Dr. Silverman's assistants in the hallway out side the lab.

"Kim, I just wanted to point out that Mac has been NPO since midnight."

"Oh okay."

"Just wanted to point that out because it will more then likely affect the UA you ordered."

This was followed by a deer in the headlights moment so I gave her a moment to think and went on...."At the very least, things will look very concentrated, I don't know how much it will throw off any numbers." She blinked. Then she turned to a trainee she had with her and explained that Mac had been a transplant patient. Then I turned my gaze to the trainee and said, "I just wanted to make sure that you guys were aware that Mac has been NPO" I wanted to instill that thought with her, hoping that someone over there would have a memory. I was trying to send her some telepathic message... to shove some light into the darkness.

Kim said, "Why don't you come back over here when he's done with the scope?"

"Well, I don't know when he will wake up or how long this will take. There isn't any cell phone reception in this building, so how about you just call the digestive disease office if you find anything you want to see us about?" What I didn't say is that I saw no reason to drag Mac's limp, semi conscious body all over God's creation if there was no reason for it. If there is a reason then... Fine! But for God's sake have a REASON for making him sit another damn hour in yet another damn waiting room while falling asleep and drooling on himself! That's all I need... a REASON!

She countered with, " How about.. if you get done before three then come on over. If you get done after three o'clock then just go on home."

Well, we made it through the day. The endoscope was done. Mac has a smaller esophagus. He has some rings that they believe are the result of damage from radiation. He has a fibrous area that they stretched out. and an ulcer that they believe is the result of graft vs. host... no mention of reflux.

We started the trek out of the digestive disease office at twenty minutes to three. I rolled him out through the cross walk through the parking garage. Made sure he was okay to stand and move. Got him into the truck. Took the wheelchair back to the elevators. Got into the truck and turned the key. The clock lights came on with the ignition.....3:00.

"Look Hon, it's three... we're going home."

Now several days later, I wonder how in the world he ever developed a small esophagus. Was it the disease? the treatment? I remember we used to have an ongoing battle about his spoon usage. He would balk at using the regular, everyday, what everyone else was using teaspoon.

He'd whine, " I want to use this spoon"

"That's a serving spoon."

"So?"

"You don't need to eat off a serving spoon. You NEED to eat off a normal teaspoon, like everybody else, so I have the serving spoon to serve with."

"I like this spoon, It's the right size."

"It's the right size if you're a pig. Use the same spoon as everybody else."

"I'm not a pig. I'm a manly man. I take manly man bites and I need a manly spoon!"

"No, you're a pig! and you need the same spoon as everybody else!"

Then I would shove the big spoon into the mashed potatoes. Then I would walk into the kitchen to get the rest of the meal and I'd hear the girls giggle. I'd come back in and his mouth would be stuffed and his hand would still be on the serving spoon.

"What????" he said, like it was a protest, but all he did was display the more then ample amount of mashed potatoes that he had in his mouth. This would send the girls off in giggles and shouting, "Dad's in trouble!!"

Well, if he wasn't in trouble then, I guess he is now. No more serving spoons for you, Manly Man.

Louie