Wednesday, December 29, 2010

One of Those Days

It has been a heavy week and it is only Wednesday.
On Monday I found out that my new labs for my MELD score in December were never updated with UNOS (United Network for Organ Sharing). That disheartened me and caused me some grief for a couple of days while I processed it.
Today I learned that a good friends wife has cancer. I have trouble with that one. I lost both of my parents to cancer.
Five minutes later I was told that one of my best friends has colon cancer. This I didn't take so well and had to find a place to shed some tears. Sometimes I just don't get it, and I wonder why things happen the way they do.
And then, on the horizon, I am thinking about Lois' endoscopy coming up real soon and the worry gnaws at me.
Too much. Too damn much to think about.
So...my score dropped because of an error. My friends are faced with sad and disturbing news that may most likely be life altering and worry is scratching on the inside of my skull that keeps me up at night. Never mind all the other stuff. The stuff that has already become part of the scenery. The kids not doing anything to help out because...they are kids. The freezer going out for the second time in a row and losing all the frozen groceries because I can't figure out what's causing the GFI to trip. Never mind the mountain of insane that keeps happening. Too much. Too damn much to think about.
I say a prayer for this and prayer for that, and in between I offer a kiss or a hug for comfort. It is heavier today, but I still manage to laugh and smile about the other things there in life. The things that are funny. The fact that my oldest dresses like Helena Bonham Carter. Or that the animals in my house always make me smile. And I realize that these things are not too much; they are not enough.

Wednesday, December 15, 2010

Just Breathe

I woke up early in the morning. An hour has passed by now; it is 3:30 in the morning. Something is bothering me and I can't sleep. I finally make my way out of bed and move downstairs. It seems exceptionally bright. The storm has moved in and the snow has covered the back yard. The wind blows flakes left and right and up. The only thing I don't see is the snow coming down.
My wife has been feeling painfully miserable. I've told her over and over again to go to the doctor. "I can't. I will. No time. Next week. I'll see." The words come out in different ways. I tell her, "You have to stop. Your going to get sicker."
She calls me and says, "I've made an appointment."
Finally. Hopefully. Maybe. She'll get better.
She comes home from the doctor and say's, "My allergies are killing me. The doctors said that my (insert names here) levels are through the roof. They are 1,400. Way too High. Stress levels that can cause heart attacks. He gave me pills."
I whimper inside. I've know that the stress levels have been way too high. I've told her that she needs to try and relax and quit taking things so serious.
"What like illness? And money? And death?"
"Yes, like all those things. Just breathe."
"Can't breathe. It's choking the life out of me."
I am happy about the doctor appointment.
Finally. Hopefully. Maybe. Things will change.
One of the first things I learned as a person with a chronic illness was that it is just as hard on the caregivers. We've gone to parent/teacher conference meetings and said, "Here's our story. Please watch our kids. Let us know if you see any changes."
I think it is different with a spouse. You can't stop the worry and the stress. It is part of the normal reaction.
I am praying that this gets better. I know that the allergens have long since been aggravating. We've been working on them. But I know that we are not saying goodbye to the dogs and the cats and the guinea pigs and the hamsters and those other tiny rodents any time soon. All we can do is minimize the damage and work on the stress. Just breathe.

I love you, Lo.

Wednesday, December 8, 2010

The Paradox

I had my labs drawn yesterday prior to my three month doctor appointment. My score went back up 4 points and my MELD is now 23. The doctor told me that I was getting pretty sick. He also said that while my score was still somewhat low, I could still be transplanted at any time. Oddly enough, I feel a little apathetic. Somewhere along the line I seemed to have crossed a threshold that's changed my outlook on things. For over two years now I have waited for this, thinking what a joyous moment it would be when it finally happened. Now all I seem to be able to think about is that someone is going to die.
I know that none of this has anything to do with me, but the thought of it has me shaken. It is in my sleep. Knowing that someone must die so that I may live weighs heavy on me. Up until recently when my numbers were still low, I had not given it much thought. Everything was still so far away. I had no time to think about what happens next, everything was about today and this moment. I was focused on how I felt and the changes I went through each day. But now that I am closer things have changed. My focus rests on everyone involved and all that comes with it. It is hard for me to look forward to something while knowing what fate will bring to another family. I was never blinded by it; it just seemed so far away. I've always known that time would not change it. It is a paradox.