What a difference a week makes

One week; record bass, the next week, well...

Well, we went to the NIH and are back. Jim had a pulmonary test, and it was the same. Actually a slight bit less in one area of the test, but it was so minimal it could just be a different machine. Sadly, the last time Jim had the pulmonary test, he had pneumonia from a bacteria. That it didn't go up at all, that and that he does have cGVHD of the skin, the diagnosis is cGVHD of the lungs.

cGVHD of the lungs works like this. Picture an army. Good guys, versus the bad guys. The bad guys (Jim's new immune system) thinks the lungs (the good guys) are really the bad guys, so it's going in for the attack. All the docs can do is hopefully slow down the attack.

They put Jim on 3 more meds. One is another breather. One is Azithromycin, which can slow down the bad guys, and they put him on Cellcept, which is an immune system suppressant. It seems odd to suppress someone's system who is catching mild germs that we can all tolerate, but they hope that it will slow down the (bad guys) from destroying Jim's lungs. We go back in 6 weeks to see if this has helped at least stop the progression. If it has, Jim will be put on the trial, which is simply another breather. If it hasn't, well, then that's just not good, if you know what I mean.

We asked the doctor, "Doctor, what do we do? We have no quality of life (other than that bass) and we are just sitting waiting for Jim to die. Is that what's going to happen? We need to plan some things like maybe selling the cottage or... She said, well, we are hopeful to slow this down. I do have a patient that has this that is still alive and it's been 4 years. We can only sit and wait and see.

The problem is, it's been 3 years of sitting and waiting in many ways. We went to church today to hear an old pastor of ours and he talked about a hamster in a tube. But it's been more like a hamster in a wheel for us. The "tube" speaks of a possible left or right that might lead out of that mess. The wheel is just the wheel. And Jim and I climbed on it and go round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round and round...get the point.

So, I need...we need to be determined to continue to press into God and to abide in him as we wake up to look at the wheel. We want to get off the wheel, but often it seems like getting off the wheel means it's because we are going to bury Jim.

Another long story short is that more people are living with Stem cell transplants, so they need to learn more and more about GVHD. It's quite possible that Jim's peripheral neuropathy could actually be cGVHD of the nerves, which explains why it sometimes gets worse, and that his stiff joints could be cGVHD of the joints and his....

It's weird, too, that Jim would have this amount of cGVHD. Bob's match was a good match and this normally doesn't happen.

Pray for our strength to continue to press on, to press into the Lord, despite the journey to those places means....the wheel.

In every victory
let it be said of me,
my source of strength
my source of hope

IS CHRIST ALONE...

PS

Gaz, if that was a perch that big, that puppy would have been put on a stringer and hit the frying pan. Some people eat bass, but we don't, so it's out there to get a lil' bigger to catch next time. Glad you're still connected.

MJ, glad Kim straightened you out on the pic.

Anonymous, a hellgramite is the larva of a dobson fly. They are nasty and ugly and they bite.

Tommy, I WOULD HAVE LOVED FOR YOU to have come with us and caught hellgramites. Between you and me (and everyone who reads the blog) Mark not only hates getting helgies, but he stinks at it, too. :-P~~~~~~~~~~~~~
Seriously, Uncle Jim would love to have you come along side of him, someone who loves the same thing and do that with him. We have been desiring ....anything for a long time, so you are always welcomed. Besides, you're young and fiesty and well, I'm going on 50 and the ole back ain't what she used to be.

And Tom, no that's not Tionesta. It's our "secret" place that you only get to fish at if you go with Jim. Jim would love to fish with you. Heck. See you or talk with you ranks huge, as well.

And we are going again this week to the cottage. Joe and MJ are there. We hope we can go fishing and catch a big one.

Mark caught a bass that was about 20 inches. He didn't like the helgie catching, but he did have fun catching some bass. I told him that I will cast the line, count to 5...1,2,3,4,5 and have a bass on, and he rolled the eyes inside his heart and said, "oh sure" to himself. And then I did it....about 5 times in a row. By the time I hit the number 5, I had another bass on. So, he laughed at that and thought I was just telling fishing stories. But anyway, we couldn't stay there because Jim couldn't cast into the hole without standing in the creek. We are going to get some of those leggin things for Jimmy. Gotta get off that wheel.... Bit if anyone has pair they are not using and is a size 12, well, you know where we live.

Also some other good news. FINALLY, FINALLY, FINALLY, we have found someone to hire to point our chimneys, and they are coming tomorrow. Sad that we are excited about this, not because it will make them safer and look nicer, but so that I won't have to worry about it when Jim dies. I mean, does that stink or not. So hard to not have every thought tainted by the wheel.

Gotta run.

Us