Home Sweet Home - Great trip

Well we are home.

We actually had a great 2 days.

It didn't start well. I hardly got any sleep before we left, and I was up all night sick with my beginning of the cold, and some belly issues. But we got up the next day, and I didn't feel too too bad. But, Jim didn't sleep on the way down, and we talked for the whole trip. That has never happened our whole marriage, so that was cool.

And then I didn't get sicker. In fact my hurting glands started hurting, and my cold disappeared. I was totally healed of my cold. It was amazing.

So, we arrive at the NIH 5 hours later, and of course, the snafu's started...well, actually they started the day before when they told us we had to be there at 9 a.m on Thursday for a breathing treatmentf that they incidentally forgot to tell us about. But I made them change the time. So, they did and Jim got his blood on 13, down to 3 for the treatment, up to 13 for the visit...blah blah blah. But the doctors ACTUALLY listened to Jim for once, so that was cool. We'll skip all the yuckies and blah blah blahs, and go to the great news.

• First, I was healed of my cold.
• Jim's chimerism test came back and his graft is 100 percent in both categories (to keep it simple.). YIPPEE. No way he can lose that transplant now.
• Jim's Graft Versus Host Biopsy came back positive. YIPPEE. I mean you don't want this, but at least we know what it is for sure, AND YOU WANT SOME GVHD, as I said, to show that the new immune system is in charge.
• Because Jim is at day 130+ or so, the doctors don't think that Jim's GVHD will ever get any worse, and that he is not at risk for developing GVHD of the Gut or the Liver, which is deadly.
• In fact, they took him off of cellcept and put him on prednisone and already the rash is better, and the increased neuropathy that Jim has stopped progressing and only cause severe pain, rather than intolerable. That might sound odd, but it is what it is, and severe is better than intolerable. Plus, there is the hope that it will continue to reverse. The Oncologist doesn't think that it will ever go away, but we're still praying for a total healing.
• Jim's NOT neutropenic. His white blood count was high. They still want me to give him the neupogin shots, because they don't think it will stay there, but I can cut down to 2 shots a week. He will probably continue to head in a good direction with them.
• JIM'S PLATELETS WENT UP FROM 28 to 80. This is huge. Normal is 150 to 450. But below 20 can be lift threatening and Jim has been too close to that too many times. And below 50, they can't do surgery without a transplant, etc.

Now, back to the crappy stuff. Again, this PA messed up and didn't schedule Jim's tooth extraction. And that really stinks, because his platelets were up, and it could have been done without a transfusion...AND WE HAVE TO GO BACK IN 2 WEEKS NOW BECAUSE OF IT. I'm really tiring of driving all of this. My goodness, I can't stand it. And if Jim's platelets drop again, (and they have done this) well, then they will have to admit him into the hopt, and....Sheesh.

And on the way home, we stopped Lilypons garden (check it out on the web) IT WAS SOOOOO COOL. Jim totally overdid it, but we had a blast, and we talked all the way home, too. (must be the transplant...but he still got Baldauff blood, so I don't get all the talking...but I'm not complaining.

And last but not least, I'm considering calling Death America...I mean health america to see if they will rent one of those electric scooter seats or whatever they are if Jim's neuropathy isn't healed within 6 months. He's getting stronger and would like to go to the zoo or....wherever and he just can't walk far. I'm sure they'll say no, so keep those prayers coming.

It's funny, it feels good to report something positive. But like Jim said, he's afraid you will stop praying for him because this is so old, and he's cancer free and... But he still has so many issues and there are many battles yet and he's on many meds, and well, me....I'm nuts, so...

But I did want to tell you this.

Also, the Lord has been revealing so much to me lately. It's been very cool. I still think the PTSD is a valid diagnosis, and I have an appt. with a doc late in July, but despite that, I have never had the type of intimacy with the Lord that I have, and the wrong ideas about him that I've struggled with all my life are changing. (MJ, I'm seeing him as "so gentle" as you always say.)

Anyway, I have more so say, but I'm so very tired...And Jim wants me to look up snakehead fish??????

Me