catching up

Hi Everyone:

Thank you for your encouragement and prayers. I'm sorry I couldn't update. I just couldn't and still can't bring myself to talk about this any longer. I am so weary with it. But, I will update, as there is something encouraging to share. I can't take always reporting the weariness, pain and hopelessness often felt.

The NIH turned out to be a bust for the most part. They spent a week sending in psychiatrists, etc. to make sure Jim wasn't nuts. (yeah, folks, he prefers to lie in bed, pretending to be in bed much more so than going to the cottage, fishing.) After they discovered he was of sound mind and it wasn't just depression, they promised a battery of tests of which they only did a few. They found nothing, which can be good. It can also be disheartening because we still hope for... Anyway. The best part of the trip to the NIH was the ride down with his brother, emotionally and physically. When I brought him home, he required 4g's of dilauded in the vein to make the trip. He slept mostly, so that was good.

Here's the bottom line of the trip, which I guess isn't all that bad, as I think about it. They don't think it's GVHD of the nerves (think, being the main word on all of this). They tested Jim to find out that he has severe nerve damage. (SEVERE) (no kidding folks...you might have wanted to test that one before sending in the shrinks.) They do think the vagus nerve is damaged because that is the longest nerve in the body and chemo attacks the longest nerves first, and that controls bowels, digestion and heart rhythm and well, everything else. His lungs have not gotten worse. There is no cancer. CT scan shows nothing. He has developed VRE. Vancomicen Resistent...something. From all that heart meds. Well, that will always get him a private room in the hopt. from now on. But that heart condition better be cleared up for real (they didn't retest that) because he's resistent to the antibiotic that treats it. Anyway, it is colonized, so for now he's safe from the VRE. (I really don't know much about it. I really don't want to know either.)


I'm not sure how it all came about, but here at home Jim got thrush in his mouth again. Jim used the word "bloated" and I started to look up bloat in humans, thrush, etc., and I told Jim that I think his hard abdomen is because of candida yeast, which is why he also has thrush. He's on 3 antibiotics prophylactic (daily to keep away germs from a compromised immune system) and 6 weeks of the Vancomycin I think really had his body all jacked up. So, he started to take medicine for the thrush. We self medicated because the docs don't like the contraindications between Methadone and Fluconazole, but we don't like the yeast. He also started to take some very strong and expensive probiotics. Then Karen gave him some even stronger probiotics. Almost immediately he started to feel a little better in regards to the hard swollen abdomen, and it continues to get better.

Also, I suggested No more sugar because of inflammation (and it feeds yeast), so he's eliminating that. I also suggested that he try the Neurontin again since the Vagus nerve can cause digestion problems, and maybe while it doesn't help the pain, maybe it would calm down that nerve which would help with the pain.

He thinks all of my suggestions are helping. (That will be a 30.00 copayment, please.) 3 days in a row now, he's had a level 1 pain for about an hour in the morning. UNHEARD OF. We just praise God that for an hour or so, he feels so good. I actually rubbed his feet. When usually I can't even breathe on them. Now the rest of the day is painful, but still better than it was, so this is good to. He actually cooked dinner. Now that was overdoing it, but he's out of bed. WHICH IS VERY WEIRD, because when Mary Jo and June kidnapped me and made me go to Olive Garden with them, he couldn't even get out of bed. So?????

Than Jim said. "If I continue in this path, maybe we can go to the cottage next week. That's the first time he's mentioned cottage this year. I do have to say though, that this scares me. I know I'm not to fear, but I'm only human. I have gotten my hopes up so many times over the past 5 years now...wow 5 years of this. Anyway, I'm so afraid to hope in anything outside of heaven. I feel like a kitten on the beach of an ocean.

Anyway, thanks for your patience with my not writing. I just can't bear sharing nothing but bad news most of the time.

We feel so blessed for Jim to have an hour off of pain. Thank you Lord.

Now Ruth is taking some type of dutch greens and we're wondering if it would be good for Jim to take. Anybody else out there taking it, that has feedback?

Us