Off to the NIH

I wonder how many times I've gone to the NIH now. Someone said, "what wear and tear on your car." HECK WITH THE CAR. What about me and Jim?

Anyway, we are going back down. Jim is being admitted. So it's one day in the hotel for us, check out and Jim's in the hopt. and I'm not sure where I'll be. The Lodge has not returned my calls about a room. I hope that works out tho. So pray they have a room. And pray Jim only has to stay 1 night. I'm not holding my breathe though. Seems they don't have a problem keeping you in there, particularly since insurance companies are not involved.

I came across this quote in the book Sacred Romance. "To lose hope has the same effect on our heart as it would be to stop breathing. " I can concur. It just kills the heart.

we're home

Hi all:

We're home. I have a bed to sleep in and clean clothes. :) Well, not really. I have to do laundry.

Docs came in without their masks and gloves, so we knew something was up. Turns out it's not viral, what is in his lungs.

He did test positive for a staph infection. They loaded up the port with antibiotics. It could be from that. He also tested positive for some other type of bacteria. They know what class it's in, but not what family. Anyway, they sent him home on some very strong antibiotics.

We have to go back next week. I am NOT happy. There goes the 4th of July and the cottage. Jim will have to have another CT scan, more antibiotics put in the port, and more tests will be done.

We will then have to go back when antibiotic treatment is over to again do the pulmonary tests.

There are mixed ideas, opinions, and outcomes in regards to the aspergillis and Graft Versus Host Disease. They think Jim has aspergillis, but whether he has aspergillis pneumonia, they're not certain of...yet. One doc things GVHD is possible, another thinks, because it's so rare, that it's not. But Jim's cancer being rare and such. Anyway...

Pray for me. I am worn out. No sleep with the sleep apnea. I didn't bring my sleeping stuff to NIH because I just don't care anymore, but I am exhausted. Having to go back next week just makes me want to cry, and I have tons of laundry, bills to pay, cleaning, etc. I couldn't wait to come home to play in the garden. Yeah. Right.

I am certainly considing stopping the blog. I seem to be a broken record reporting negative things. It is what it is. When we're feeling funky because of bad attitude, we try to check it, but really this isn't about bad attitude yet. We are just overwhelmed.

"God will never give you more than you can handle" is NOT a bible quote. Quite often he does give you more than you can handle, so that you need him and have to draw on him so desperately, and then having done that, you hand on to your hope. But it's a hard thing, and typing it here...I don't know. I'm more and more isolated from life and people, and sitting here...I don't know....

So, I'm not even sure of what I'm reporting. Basically, it could be all the things we've mentioned or not. Nothing we didn't know before. And....WE HAVE TO GO BACK TO THE NIH NEXT WEEK. We leave next Wednesday. How despressing. You all have a nice 4th. paaaaa.

don't read if you don't want to hear whining...

Hi Air:

I mean, it's not like I'm really talking to anyone. I know there are you out there reading and praying, but it's sort of like not real. Like my sister is picking my tomatoes and broccoli, despite me planting them. They're mine, but I can't touch them, taste them.

That is what our lives have become. We're alive, but we can't touch life, or taste it...for the most part. I mean, we're okay, but we are weary. For Jim, it's landing on his heart as hopelessness, for me, it's more like zombi-life. Did someone eat my brain?

I thank God that for the past 2 nights, I have been at the lodge. I had to check out today. I have no hotel or anything. And it's probably mainly because of me. I could have called the social worker to see if there is any way I could stay another day, or call priceline to see if I can get something cheaper than the standing rate--despite their not doing that lately--and I can even drive 1.5 hours to our cousin's house. But I just don't want to. I have no energy, desire, whatever it is, to do it. If Jim stays longer, I will find a chair somewhere in the hopt. and sleep there. Or I'll sleep in my car. I have no clean clothes. There is a washer and dryer around. But I just don't have the care to wash the laundry here. I'll wear my dirty clothes. I really don't care. I don't stink. So what does this all mean? Well, today it means, I just can't do this anymore. But I'll keep on doing it, but I care less and less. I just want to be home looking at my pretty daylily's. I had a friend suggest that some day I will enjoy looking at a raindrop for a half hour. Heck I would do that now, if I could stay home long enough to do it. I don't want the world. Just my bed, to stop coming here, and for Jim to stop being sick.

Yesterday we stood at the window of his room looking out. Jim said, "what are you looking at?" I said, "Freedom." I ask him what he's looking at or thinking of, and he says, "nothing."

And I scoff when people say...oh never mind.

I just can 't stand to not be home in my garden, in my pool, in my kitchen eating at least once decent meal a day.

Okay, I'm done. the pity party isn't over, but I see some guests are leaving, so...

no news

There is nothing to tell yet. ??? Jim had a horrible night coughing. I sat in on the bronchoscope. It was weird looking into his lungs.

Just got in...

We we just got into the hotel. We arrived at hopt. at 6:30 and I pushed him in the wheel chair from here to there (you remember a prior blog about this floor, that floor and on and on) and just got in. 12 HOURS AT THE HOSPITAL. I can't tell you how many days like this we've had in the past 3 years.



Well, thank you for your prayers. Jim was able to make it through the cat scan. He got tons of blood work, a nasal wash to test for bacteria, and a pulmonary screening of the craziest type. The pulmonary breathing tests were scary.



Judy, sorry, but I didn't get your message until now and my phone is dead. I will call you tomorrow, okay? And thanks for the posting K and MJ. Nice to hear from you, too.



Jim's breathing tests are worse than 3 months ago. And his cat scan has something on it that wasn't there 2 weeks ago. So, that invalidates the breathing tests, sort of. So that is actually good. In other words, the pulmonary tests should be worse since he has this gray matter showing in the cat scan.



Now, what is it? The infectious disease doctor and the lung GVHD doctor came in. They were amazing and explained everything. Nothing concrete, of course, but at least they explained what we were seeing on the CT scan and such.



The infection diseases doctor said the mass is NOT cancer. They most definately believe it is some type of infection. Viral or bacterial, they are not sure of. And whether it's there because of GVHD, they are not sure of yet either. They are admitting Jim into the hospital tomorrow where he will undergo another bronchoscope...or something like that. Pray that he doesn't wake up while they do it. He woke up twice during the procedure last time. They will not confirm by the looks of the CT whether it is aspergillis pneumonia or not. They think it can be, or it not. From what I understand, they are supposed to be able to tell by the CT scan, that's why they do them, because they can clearly see the shape of it. We did not see the written report of the CT scan. I should have asked. I know because it's a clinical research hopt. they like to know for certain, and maybe that's why the broncho tomorrow, but I hope not. Jim shouldn't have to be put through anything extra. However, knowing for certain what it is can mean the right treatment for it. So, he will stay in the hospital over night. Hopefully that will be all. They took a bunch of other tests, and gave him some IV antibiotics just to cover all bases for the small things, considering he was poke at, and needled to death, and tomorrow the scope, etc. Pray also that his lungs don't collapse from the test. Small chance, but hey, it's us. :-



Now the GVHD doctor said she can't accept him into the trial until they know for sure it's GVHD. So, first they will find out and clear this thing up if they can, and then they will head there. Despite Jim's stemcell being a great match, it CAN be GVHD. She sees it about 50 percent of the time, even with a good match like Bob was. Also, she wants to see if there is any active GVHD on Jim now. He has some marks on his legs, but the infection disease doc thinks it's bacterial, and s the GVHD doc thinks they are iron marks, so they want them biopsied. I'm not sure if they will do that tomrrow or the next day. Once all the tests come back from bronchoscope and they know what Jim is doing, they will then determine if this is happening from GVHD, and the sure fire way of finding out if it is, is by doing a lung biopsy. SIGH... But that won't be for some time.

If it is Aspergillis, they can treat it, but it's often hard to get rid of. But the docs think there is a good chance it's not that because it doesn't make sense. They said we all have some of this in our lungs possibly because it's in the air and everywhere. And Jim's white blood cells, while low, are not showing that he would be susceptible to this. So, it's quite the puzzle.

Anyway... Also pray that I get a room in the lodge. I am eligible when Jim is a patient, but on short notice, it's sometimes hard.

I am beat, physically and emotionally....Jim's coughing right now....Please pray that he sleeps.

I had an amazing time of prayer today, and some great fellowship with the Lord. I think I learned something that could quite possibly go in the "amazing" category in regards to my spiritual growth, but I'm just too tired to share it right now. Let me just say that the Lord has matured my intercessory prayer life another step...Well, maybe I've taken the 1st step in understanding truly something about prayer that I could never get, but always wondered about.
Of course that doesn't mean I didn't cry about 5 times today, but you know...

Good night everyone.

Oh, Bill. I know that you have it set that the blog is automatically e-mail to you, and then sometimes you respond to it through e-mail. I want to tell you that I cannot get my e-mail from here, so if you did e-mail me, I'm not ignoring y0u. I'll get it when I get home.

Bye now. Pray for my dear hubs. He is so long suffering.

prayer request

please pray that Jim will stop coughing. He has not stopped all night. He didn't sleep at all. I got about an hour or so. He will have to be still for the CT scan, and he just can't stop coughing. This is just so terrible what he is going through.

Pray for stamina for him to make it through the day. Me too

today, the complete opposite

Well we're at the hotel for Jim's appt. tomorrow, and I'm nervous.

Today was horrible for Jim. As good as yesterday was, today was bad. He woke up bad and it just got worse. I don't get it.

I did everything to get us here, pretty much, from cleanup outside (I can't leave the yard messy???) to packing up and driving. We sat in traffic for an extra 1.5 hours, so the trip was long. Jim coughed non-stop the whole trip. I felt so bad for him. He felt bad for me. I told him the first 6 hours, I feel bad for him, but then I feel bad for me. :) Actually I am becoming the most patient person I have ever been. Is misserably patient a good thing? LOL

Well, keep praying.

A good day

Today is a wonderful day. I can almost imagine we are the old J & G (D).

Jim is doing better today. He's hardly coughing, and not wheezing, and can breathe. Praise the Lord. Keep the prayers coming. God told me to pray for his healing almost 2 years ago, and I keep praying. I know you are, too. He can feel them. We can feel them.

It's always good when Jim is doing better, but that's not the only thing. The sun it out, the garden is beautiful. Really. I have to say it. My garden is the most beautiful it has ever been. Including my veggie garden. Peas are done, and broccoli, too. Until next week, when the next round of broccoli begins. The onions are PERFECT, and we picked our first ripe tomatoe. (YEAH, TOM. Beat you again.) Tomato plants are about 4 feet tall already. I beat my old date of June 24th. I could probably win the Pittsburgh ripe tomatoe contest...maybe. It doesn't matter. The herbs are doing well. Peppers, too. Lettuce is done, and time for more. Zukes are blooming, and cukes are climbing. Lemons, too. Figs almost ripe.

The flowers.....UNBELIEVABLE.

The sun was hot, and I was out in the yard all morning with no distractions. Jim and I swam in the pool. I cut his hair, so he's all clean for the NIH tomorrow. I will miss my yard while there. But I enjoyed today. If it wasn't for me having to go to the funeral home tonight, it would really be good.

What I did today is what I have yearned for. The sun on my face, looking at the beauty of the garden, with Jim by my side. Can't beat that.

God keeps this up, we just may go to the cottage for the 4th. Bill, you having a party this year? We're ready!!!

Keep praying

Keep praying for Jim. He is REALLY struggling. He says the past 2 weeks have been the hardest. Worse fear than when he had cancer.

I can hear gurgling in his lungs, and he's scared.

We go to the NIH this Sunday.

Judy thought we got to stay at the lodge every time we go, and we don't. That's only for family of patients that are actually in the hopt....if they have room, so seriously, pray for Jim, our finances, and my hand as I drive back down there. And pray that the CT scan give us something good.

I looked at the trial for GVHD of the lungs. It's stupid. It's for an inhaler. They're not kidding when they say they don't have treatment for it.

If interested here's the "trial." Jim's already on several breathers. This trip is about testing and comparing his lung capacity and to compare CT scans. I can't even stand to post my thoughts because then I have to feel them.

Summary:

Background:

Bronchiolitis obliterans is a form of chronic graft-versus-host disease (GVHD) that sometimes develops after stem cell transplantation (SCT) or bone marrow transplantation (BMT).

In bronchiolitis obliterans, immune cells that normally fight infections attack the lungs of the transplant recipient, causing destruction of lung tissue and fibrosis (scarring). When fibrosis develops, the lungs cannot work properly.

Montelukast (Singulair) is a drug that has been used for many years to treat asthma. Its use as a treatment for bronchiolitis obliterans is experimental.

Objectives:

To see if montelukast improves or stabilizes lung function in patients who develop bronchiolitis obliterans after BMT or SCT.

To assess the safety of montelukast in patients with bronchiolitis obliterans after BMT or SCT

To see if montelukast affects the cells that damage the lungs.

To see if montelukast improves other forms of chronic GVHD, quality of life, and overall survival in patients with bronchiolitis obliterans after BMT or SCT.

PS

Jim's trying another medicine that cost 150.00. Pray for our finances, too. Doesn't matter about insurance for that one. It's not covered. :-\

Prayers needed

Hi Everyone:

I would say we are in crisis mode again, except I'm not so sure it ever really leaves us.

Jim's neuropathy is increasing. He has muscle cramps so bad that he can't even sleep. I've discovered some info about nerve damage. Anyway, some regulate feeling, others muscles, and some both. I guess Jim has damage to them all. He was/is going to go to therapy, but we can't get anything else straightened out long enough to get him there, including the health care situation.

PPG, again, didn't call.

We might have to go to the NIH tomorrow, or Jim into the hopt tonight if he gets even a bit worse. He's taken a turn for the worse in regards to his lung. His cough is so horrible it's frightening, and it's sore. The CT scan yesterday would have been EXTREMELY helpful, but again, they wouldn't do it without insurance...despite us having insurance. Anyway, PRAY PRAY PRAY that it is a black mold pneumonia and NOT GVHD of the lungs, cause if it is, it's growing fast.

My Jim is so scared, despite him trying not to be. The thought of him being cancer free to die of something that will take the air of his lungs is just too much for him to handle.

Thanks.

The best laid plans of Jim and Gloria....

...just don't work!!!! Hrrrrrmmf.

Well, I went to the cottage, but I couldn't get the grass cut. I couldn't get the tractor to start. Now, I've started this tractor hundreds of times, and when I need it most, it fizzles out. I even took the air cleaner off and poured gas in the carb, and that would get it going, but it wouldn't stay running. I almost got it, but then the battery "got dead." At that point, I just gave up.

The wild flowers look beautiful. Now, I hope the rainbow people don't break in, hoping to shower!!! Yes, the rainbow people are up the the Allegheny National Forest this year. Google them. I don't have the time to go into who they are. But here are some buzzwords that might describe them. PEACE, LOVE, HIPPY, DRUGS, NUDITY, EARTH, HARMONY. Nuff said?
Talked with a women who said they usually don't do too much harm, except they like to break into cottages to take showers, steal food...that kind of thing. It' s the riffraff rainbow people, not the doctors and lawyers who like to play woodstock for a week. Sigh. Give me a break!!! Hey GAZ...I hear they are coming to Australia next year. I BET YOU'RE A CLOSET MEMBER, HUH? lol.

Okay... Jim's CT scan. Well, that didn't work out either. As I said, our best laid plans should just go in the toilet from the getgo. Save us lots of trouble. So, while my tractor wasn't working, his health insurance wasn't working. No one would pay for the CT scan because PPG and MEDICARE have our insurance issues so fowled up. Jim doesn't have an insurance card, and I do, but if I give someone my numbers, I'm not in the system.

So, no cut grass, no CT scan. No idea of what is going on with Jim. Maybe no 4th of July at the cottage. No this, No that. No No No. :-P~~~~~~~~~~~~~~~

cottage

Thanks for your prayers everyone. I feel a bit more balanced today. Just resting in truth.

I know these 2 things are true:

I am passionately loved by the God of the universe
I am passionately hated by the God's enemy:

Well yesterday I felt the hated of the Enemy. But not the love of God.
Today the Enemy can feel my hatred for him. So, there...

Do I feel the passionate love of God? No. I struggle with that one. Often. But feelings are just that. When I REST on the truth, despite me not feeling it, it goes much better.

But I DO believe that God would have us FEEL his love. So, I get in the WORD WORD WORD, and pray that it falls from my head into my heart.

I am going to the cottage. If Jim and I want to go up to the 4th, I have to get that grass cut. But first I need to repair the mower. Well, it's just put the belt on the cutting deck cause it keeps falling off, but getting on the ground and messing around with those gears and grease and belts and pulleys, well...THAT'S repairing to me. It's supposed to rain, but I'll do it in the rain if I have to.

Jim has a CT scan tomorrow to determine "WHAT" it is.

Hmmmmm

Apparently, "God, stop" isn't very effective in arguments with God.

However, we don't have to go to the NIH 2 weeks in a row. Hurray. We have to go, not this Thursday but next...maybe. Jim is having a CT scan here this Wednesday, and then possibly a drive to the NIH the following week.

The NIH thinks that Jim has the asper...black mold in his lungs, but it is colonized and is not causing an infection. The CT scan will verify whether that's true or not. So... if that's the case, then it's GVHD of the lungs, and we're not sure what that trial will look like and whether or not Jim will even participate. We are both THAT tired. What does the "that" mean? It means letting nature take it's course.

I can't even type that. Everything in me says FIGHT TO THE DEATH. But I can't get out of my chair to check on dinner. I"m THAT tired of it all myself.

Now Jim thinks that it's not GVHD, and that it's just asthma and such. But he doesn't smoke and it just developed because it wasn't showing on any of the PET scans prior to...So, I'm not sure if Jim is trying to fool himself to give himself the okay, or whether to maybe listen up. Jim's not a dummy. So..

Job 13:15

“Though He slay me, I will hope in Him. Nevertheless I will argue my ways before Him. "

GOD, STOP!!!!!!!!!!!!!! PLEASE!!!!!!!!!!!!

(This is just me (Dolly) at the end of herself, just wanting to die, runaway, be kidnapped or have the rapture come, if indeed there is a rapture...) BECAUSE I'M NOT REALLY SURE, BECAUSE WHO WOULD HAVE TIME TO STUDY GOD'S WORD WHEN.....

Jim's home

Hi Everyone:

Jim's home. Could be that the hydration made the kidney numbers come down, but they are a bit down, and he's home until....???? I have no idea. They just didn't have anything more they could do with him inpatient, so I'm glad he's home.

Walked in the door, and the NIH called. They want us back down there next week. Still not sure about the lungs, but he tested positive for aspergillis....BLACK MOLD. I guess they were very serious about not coming home to our house if we have mold. We did what we could do. I almost had a nervous breakdown trying to get our walls and floor clean and painted. We couldn't afford to have it done professionally, so we did the best we could. So while it looks better, it still stinks in our basement, and, well...it is what it is.

Aspergillosis may affect patients whose immune system may be compromised - including those with leukemia, chemotherapy patients or those on steroids, transplant patients, cystic fibrosis, HIV or AIDS, chronic obstructive pulmonary disease (COPD), chronic granulomatous disease (CGD), severe asthma with fungal sensitivity (SAFS) and many others.

Risk factors?

Sources of increased risk include - dirty air conditioning units, and damp or flood- damaged housing, all of which can yield higher numbers of aspergillus spores. But immune suppression of an individual is the most important factor.


Pulmonary aspergillosis - invasive type -- is a serious infection with pneumonia that can spread to other parts of the body. This infection occurs almost exclusively in people with weakened immune systems due to cancer, AIDS, leukemia, organ transplantation, chemotherapy, or other conditions or medications that lower the number of normal white blood cells or weaken the immune system.

They may want Jim to become involved in a treatment protocol. We have no idea what that means. If it doesn't involve them buying us a new house, well, forget it. What's the use. Maybe it's time to move to Arizona. But I can't see us driving to the NIH every 2 weeks from there.

I'm glad that Jim doesn't read the blog. He doesn't even know what aspergillosis is. And I think I will keep it that way. I hate the internet.

I'm going to see Karate Kid with my brats...er I mean with my nephews. It will be fun to do something non-medical. Maybe it will take me out of the fowl mood I'm all of a sudden in again.

Still in Hopt.

Hi Everyone:

Jim's still in hopt. Kidney numbers a bit better. So, we'll see. Not sure of anything yet.

Gary, I thought of you immediately. :) The "good" ole' days. ;)

MJ, I love that scripture.

Everyone else, thanks for the prayers. My dear husband needs them.

PS my hand is slightly better.

Back to the Hospital

Jim went to the doc today for a scope of the voice box. No problems.

He came home. Doc called and said the blood test from yesterday's appt. showed high kidney numbers, and he's very concerned. He wants Jim to go get another test.

Jim goes to the lab to get another blood test.

The doctor calls and says, can you go get another blood test, I forgot to write "STAT" on it.

Jim goes to the hospital for another blood test

The doctor just called and said kidney's still only half working. Numbers are high, I'm admitting you.

Jim is going into the hospital. It is a 5 trip day, counting the admission. As for me, I still can't get a name for a hand doctor because I still don't have my medical card because....and on and on it goes.

I'm tired.

H E L P ! ! !

Can anyone give an intramuscular shot?

We called our doctor's office and no one there feels good about giving it?????

The doctor who prescribed the medicine didn't even give us needles...

I don't get it.

Jim needs to give himself testosterone shots once every 2 weeks. If you can do it, HELP...

Thanks

4 a.m. pain

Today's 4 a.m. pain isn't quite as bad as yesterday's. But I am up. So what do I do? Compute and change the background on this blog.

SISTER, WHY ISN'T THE COTTAGE LINK WORKING??? Someone wants to see it.

Now, back to my regularly scheduled griping!!! It hurts, but while yesterday's pain was 10, today's is about 5. I have another chiropractor appt. at 9 a.m. today. I LOVE MY CHIRO. I haven't seen him in about 3 years, but when I need something, who-dew I call?

I know many are skeptical about chiropractors. I am too. LOL. But he has held my carpel tunnel away from surgery for 15 years. He has taken away heal spurs. He's stopped me from a porcelain jaw from TMJ, and Achilles's heal surgery. But this pain from yesterday to today, AMAZES ME. Thank you Lord.

I was talking to Kristen yesterday and telling her about Jim. He was working in the yard, trying to help me and he was having fun building tomatoe cages. But he started coughing like nobody's business and I could see his shortness of breathe. And I started crying. And it went to a full throttle, rocking back and forth on porch, "Lord, please don't take my 'Jumbo'" crying jag, and then prayer time. Jim heard me and said, "Are you back there?" And he said, "I'm not dying."

You know, when he laid in the NIH with 50 pounds of water because his kidneys were close to not working, the spider venom trial wasn't working, and I fully believed I wouldn't be bringing him home. And Tom and Judy were there, and when they saw him, they looked just as scared as I did, and....Jim did not feel like he was dying.

I'm going with Jim's feelings.

1-hand update

well after I cried all day yesterday ti my best friend (Jesus) I feel so much better.

1st--I'm typing with one hand. after 15 years of symptomatic carpel tunnel, it's full blown in the left hand. I prayed that I could understand jim's pain. THAY WAS DUMB. sdorry fir typos. No wonder Jim said he would have his legs apmutated if it wasd an option. The pain increases 10 fold when laying down. I have not slpt more than 4 hours the past 3 nihgts. Jim drove home,

Oh, maybe that should have been first. We're home.

well, Jim's cond. should have been 1st, but I wantedt to explain the typos thing. Still pretty fast for one handed. Can take the girl out of court reporting, but can't take the court reporting out of the girl i guess,.

Well, docs are 95 percent sure it's not an infection or viral, which means 95 percent leaning towards GVHD of the lungs. The host (jim) and me are not very happy about it. But we are peaceful, at least at the moment, with plans on remaining so. The graft (Jim's new immuney system) is attacking his lungs, like they are his enemy or something. I told God how much we need them. I know he's listening. I"m praying he's agreeing.

Okay, this is hard. I'm forcing the left hand a bit. (btw pray for me. The pain is severe, and with Jim goin on Medicare, I had to change insurance, and I did that last week, and I have no idea what insurance I have at this time, so I don't know what doctors I can go to, and it's just so convoluted.

Anyway backe to JIm. We have to go back to the NIH in 2 weeks. SIGH... I need surgery before then. I need it now. Anyway, they will do another pulmonary function test on Jim just to measure whether his lungs are staying the same or decreasing.

If it is GVHD that has caused the inflammation in the lungs and is attacking the lungs. It can be slow. Or it can be fast. It could just stop all of a sudden and go away. It cannot be controlled, and any damage done can never be reversed. So, that's it in a nut shell. And there is no way of knowing. There is a trial thing going on a drug they hope that can slow the progression if it is GVHD, but we don't know anything about that yet. It didn't sound all that great tho. GVHD of the lungs is rare. But because Jim has had GVHD of the skin and has had lung problems (such as his cronic bronchitis) it does make Him susceptable. This is NOT good news.

Some other weird stuff is going on. He is neutropenic again. So I may have to give him a few shots again. He may need some oxygen. I don't know. I just hurt for my husband. He is so brave. To see him laying in that hopt. room again.. you have no idea..

I know the summer isn't happening the way I had hoped or planned or prayed for, but it's okay.
I listened to this teaching on the way to NIH. John McArthur about trials. It was great, and we felt happy inside to know that what Jim and I go through has matured us is ways that we could never do on our own. The one thing trials do is help us to let go of the desires of this world. That's a hard one to wrap my head around as my list is so small, there is not much left. "no kidding, John. Really?"

I still have quite a way though to go through fear for my future. I guess that's God next assignment. But really, none of us know what the next day, or even the next moment holds for us. So, I guess Jim's condition isn't any different than anybody's. It's true, but why doesn't it feel true?

Okay. I have to stop now. hurts. in a few ways.

Us

coming home tomorrow

Well, so far, all the tests came back negative for an infection. The team of doctors have come in and they said we can go home tomorrow and to prepare to come back when we are ready. They won't be giving Jim his immunizations until we come back.

The preliminary tests that have come back negative and show no infection, and those are the tests the doctors would use to see if he has infection. The tests that can come back the next few weeks are tests looking for other things. So, that leads them closer to thinking it's a possible GVHD of the lungs. Jim asked if it was possible that it was just COPD, and they didn't rule it out, but it seems the docs don't think so, particularly since the scans show inflamation. The only way to find out if that is what you have is by ruling everything else out. Anyway, at least we can get home and I can get well, and we get some clothes and my meds and take care of lose ends. We will then come back down in a week or 2 or 3, depending on the rest of our conversations with them, and I don't know any more about anything else. So, keep praying for us.

My left hand, I'm not sure if I overused it up the mountains or not, but the carpel tunnel syndrome is hurting so bad, the worse it has in 13 years. It's killing me. Pray for that, too.

Thanks.
Love Us

Negative so far...

Hi All:

Well the biopsy was over and easier, kind of, then expected. No cutting even. It was done by a water flush, so that was good. However, Jim kept waking up from the anesthesia and he felt like he was choking. The tests will be coming in from tonite up to the next 4 weeks. So far they are coming back negative for infection. Usually that is a good thing, but not for Jim. We want infection. But we'll see.

I have no idea if they are going to send us home to wait, if they are going to start Jim on a trial, if they are going to do other tests...what? So, that's all I have to share for now.

Going to bed. Niters all.

Admitting Jim

Hi Everyone:

GREAT NEWS...Jim's PET scan is negative. So the cancer is NOT back.

NOT so great news... Jim had to have another CT scan. After telling them about the past 3 months and Jim's new COPD Diagnosis, their antennae went up. They are admitting Jim into the NIH because he may have a very very severe infection of the lungs that people with compromised immune systems, people who have stem cell transplant, get. In fact we want him to have this infection. This would be good. Because they can treat that. The other thing is could be is that he had developed GVHD of the lungs. THAT is not good at all. So please pray that this is an infection and not GVHD of the lungs.

I am at the Hilton for a night and then they are putting me up at the lodge for 2 nights and then I'm not sure where I'll have to go, so pray for me for energy, too, because my bronchitis or whatever it is that I have is not over and I'm really tired.

Thanks family and friends. My poor dear Jim. He says, "I'm not poor, Honey, but I am dear." I can't help but love that man.

Dolly

At the NIH

Well, I'm sorry Mary and Gaz that I didn't respond. I got sick again. Must have been that warm/cold spell I had. Ahem ahem. I will send you pics, Mr. Austrailia.

Mary, EVERYTHING is about the mind, isn't it. and YES, IT WAS THE OFFICIAL HELGY WEEKEND. Jim and I were in Helgie land last week, and alas, he just couldn't do it. It would be very sad if we weren't so darn happy that he's alive. :)

anytime you guys want to go and do the best bassfishing in your life, let us know. You and Jake will have to man the net, but we'll take you to them. You'll have to spend some time with us at the cottage though. Jim would love it as well. Or if Jake can't come, um, it would have to be you and me. BUT WHO WILL TOUCH THEM????

Okay. Well, we are at the NIH. Jim is getting his PET scan. I am sick, trying not to be, so they don't kick me out, thinking I have some communicable disease. Just kidding, but really, don't want anyone to worry. My coughing is just the aftermath of 2 colds in 3 weeks. YUK. I can't complain though. I hadn't had a cold for 1.5 years. AMAZING FOR ME. THANK YOU JESUS.

The only one worrying right now is Jim. It seems the time after he gets the PET scan until the Doc says there isn't nothing to worry about, Jim worry's. I think you can quote scripture to him any time, and he'll take a thought and reflect and get right with his thinking. But worrying just seems to go with PET scans. Oddly, me, Mrs. worrywart, doesn't worry a bit. I'm just so used to insanity that nothing would surprise me. :) "I just go with the flow." (Groundhog Day quote)

However, I am not expecting any surprises here. This is the standard 15 month PET scan. Just think, in 3 years, 9 months, Jim can say, "I'M CURED." But that's just medical lingo. Only God knows the number of days we all have.

Okay, time to run. keep us in your prayers.