better off the meds

Hi everyone:

Jim is feeling better now that he is off that new med that was causing the problems. Pray that his lungs will just stay safe. And because he's feeling better, we are going to the cottage. We're coming J & MJ. I'll bring my dominoes. ;0

(Leah Belle), I feel them. ;)

breathing deep

I took a deep breathe today. :)

I slept in until 8:30. Of course, I didn't get to bed until 2:30, but that's still good for me, because I would normally still get up at 6 a.m.

I'm going to Whole Foods with my girlfriend. (Kristen, just to watch her buy food. I'm with you. I love the stuff, but too much moola.) However, last time I did get some rice and beans. There are some things that one can buy that is organic that isn't much difference. So...LOL. Rice and beans, beans and rice.

Well, that knock on the door that interrupted me was the neighbor kids wanting to come for a swim again today. I had them over yesterday swimming for hours. I told her they can come over later maybe. Pests. :) But they're nice pests.

Okay. I'm doing a bit better today. I only cried my eyes out once today.

God bless us all, huh?

tired, but not for sleep

Yeah, I'm tired, but not for sleep. I guess that's obvious, since it's 12:45 and I'm not even ready to sleep. Worked hard today, too. I was hoping it would exhaust me, but that didn't happen. I hate being so energetic, particularly when I'm down, because I have the energy to go go go, but not the drive. I just want to vedge vedge vedge, but that just seems to lead me to being even more restless...oh I'm just going to shut up. I'm just too weird anymore. I can't sort through my feelings and make sense of them. I'm all confused and just a bit off.

I'm still a bit frustrated about the insurance thing. It's not the copay. As I said, God provides. He always does. It's just that I put in SO MUCH TIME to get the best insurance and check everything, and I screwed it up. Lately, I feel like a screwup. I know it's not true, but....Just too too much. Too much time alone. Too much....well, a lot of things. Okay, now what to do...

Maybe I'll make and freeze some more zucchini bread. :) I still use your and Jeanie's recipe, Bill. It's the best.

I could just cry

Well, you all were so excited about the fishing expedition, I thought I would share about our next one, but unfortunately that will not happen. I know Joe and MJ can't read this, but we probably won't be up.

Pray for Jim. The new meds are making the pain so intense, and his brain fuzzy. He didn't take the meds today. These are the meds that are supposed to slow down the GVHD of the lungs, that will get him to trial.

Then after all the info I searched and searched about new insurance, and it FINALLY going into effect, they come today to give Jim his new bi-pap, and there is a 70.00 a month fee that we didn't have to pay before. Jim told her to take her machine and leave. I said, "no" and just wrote a check for it. God will provide. He always does.

Everything is such a mess. I am so tired.

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

Can you believe Jim's sick? Really???

Here's a pic of the fish that Jim caught last week when we were up the cottage. 21" smalley.

This DOES NOT look like a sick man. It's so weird. This photo could says, "Why aren't you at work?" "Why weren't you at church?" He was in bed 3 days after this 1/2 day of fishing.

Looks are deceiving. So don't stop praying. Having said all that, IS THIS NOT SO VERY COOL????

Update

First the good. Well, better than good. The excellent.

We enjoyed a WONDERFUL week up the cottage. It took Jim a few days, as the antibiotics made him sick. I talked Kim and Mark into going helgie hunting just so Jim could go fishing. I broke my back getting them, and it costs us 70 bucks in liscense fees, but worth it. Jim caught a 21" smalley on a helgie and was in heaven. Now, of course, I almost had to bann him from fishing, as he thought he was going to wade in the creek like the old times, but I had to remind him of how susceptible to things he was. Anyway, we all caught a nice bunch of bass, and it did my soul well to see Jim enjoy this time. We had some good birding and golf cart rides. I cut the grass on the tractor that we brought to the cottage and it was so much easier on the back than the old cottage. Thanks Karen and Bill. Couldn't have done it without you. Plus, you had the grass looking so nice when we got there. We didn't hook up with Tom and Judy or Bill and Jeannie like we had hoped, but like I said, Jim was sick earlier in the week anyway.

We thank God for that very special time together up the cottage. That is what we wanted more than anything, even without the helgies. I just had to do that. Hello Chiropractor. :)

Now for the bad. Jim's biopsy of his legs came back and it is cGVHD, Chronic Graft Versus Host Disease. It's so weird cause Bob's match was so good. Well, we kind of knew it, but hearing it just brings the sadness to the surface. I know this doesn't prove that Jim has cGVHD of the lungs yet, but it's looking more and more like that is the way it's going. Pray that it's not. I don't know what cGVHD means, like can this become cGVHD of the gut? I just don't know.

Jim went to the hopt. yesterday for xrays. We think his rib is broken, and his bones might be more frail than we originally imagined. Folks, I just don't think there is an end to the health issues outside of a total healing from God. Sort of like Lazarus. I was in denial thinking we would some way get to our old way of life without it.

So, I don't know. But I know this. I love my dear husband. I continue to learn from him and be blessed by him. I pray that continues for a very long time.

update

Hi Everyone:

Sorry I'm posting so late. I've been a bit out of sorts lately. Well, a lot lately.

Well, Jim's CT scan shows that the antibiotics that he's been taking are working. So, the corynebacterium (not the one that causes diptheria) but the one that is everywhere and on everybody is the infection that was causing the coughing. He's also done coughing. Jim also has the aspergillis, but it is colonized, so that's not an issue, but he will have to take a small dose antibiotic every day of his life to stop any little infections from sprouting. Jim does have a compromised immune system, but WHY this infection???

Now, the bigger questions.... Jim went for his biopsy of the skin on his leg. 3 skin doctors at the Cancer Institute said it was cGVHD (the c is chronic) His old GVHD of the skin was acute. But they biopsied it anyway for a clear diagnosis. And the reason they did this is because the rare cGVHD of the lung usually presents itself in someone that already has cGVHD somewhere else on their body and in someone with prior lung issues. Jim has both. So, their thinking is. WHY did this infection take hold in Jim? He probably has cGVHD of the lungs.

Jim thinks he doesn't. I think he does. The docs will let us know. They wanted us to come back in 2 weeks. We said, "NO." We'll come in 3 weeks. And they okayed that. Thank you Lord for the break.

When Jim goes back in 3 weeks, he will have a full round of pulmonary tests. These tests will show the docs if Jim's lung compacity is dropping, failing, etc. And the leg biopsy will be back, despite the 3 docs thinking it is. Oh, by the way, Jim thinks it isn't. Gotta love these Baldauffs' self diagnosis'.


I put a question out there. Not really for you to answer, but just something I've been wondering. God said through Paul's letter to the Corinthians, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." And there's tons more talk about the cross. Jesus says, "If anyone would come after me, he must deny himself and take up his cross daily and follow me" oh never mind.

I've been thinking a lot about Joni E. Tada who now, after everything else, has breast cancer. I think of her husband Ken and his amazing love for her. I love that she thanks God for the wheelchair that has helped her move, and that when she gets to heaven she wants to then throw that same wheelchair into hell where it belongs. Why don't we pray for more pain if our eternal glory for outweighs what we go through here? LOL. Oh, I know I know. Let's see. I wasn't made for it, but was made for the garden and perfect fellowship with God. Who really wants to hurt, but I think the real answer it closer to, I'm selfish and I don't fully trust my God or know Him. And that saddens me. But it's honest, and as Amy Grant says in her new song,

We pour out our miseries
God just hears a melody
Beautiful, the mess we are
The honest cries of a breaking heart
are better than an Hallelujah sometimes.