Wednesday, June 29, 2011

2 days

Well, the "good times" last a whole 2 days. He's in so much pain, he can't even get to the hopt. for a blood test. Back in bed, pretty much 24/7.

I'm depressed. I can't take it, today.

Bottom line. This is our life, until one of us dies.

It is what it is.

Sunday, June 26, 2011

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

Monday, June 20, 2011

no words

hi folks:

I have no words to share. Years ago I started this blog because the many phone calls were too much to handle sharing the same thing over and over.

I am at the place where I have no words even for the blog.

3 weeks ago, Jim ran up and down the stairs. It was amazing. That was crazy. But that only lasted about half an hour. Then Jim had a GREAT trip to NIH with his brother Tom. Amazing.

The NIH says Jim isn't dying. But they also walked in the room with not much more than a pep talk. "You can do it Jim." Do what??????? Bottom line, they have nothing. We have nothing. Jim's pain is intense. He can't breathe. He stopped taking the coumadin because he doesn't even have the strength or desire to go to the doctors every week for the blood level test. It was so bad yesterday, that I'm amazing Jim is alive this morning.

Anyway, that's all I can say. I'm sick of talking about it. Sick of not knowing. Sick of it. I have no energy or desire to talk. Jim neither.

Friday, June 10, 2011

ps

With Jim down there, I got the bible study done, the laundry done, the house cleaned, the mattresses flipped, I install drip irrigation for my citrus plants and now....

I HAVE TO CUT THE GRASS WITH NUMB HANDS BECAUSE THAT--you know I am not in the habit of calling people names. But I want to to say--DONKEY HASN'T BEEN HERE FOR 2 weeks to cut the grass and it's so tall, and this is not fun. Okay. I guess, I'm looking for a few "poor Dolly"'s. Not sure why. Time to buy a new dress for the pity party I'm having...

why Costco?

That's the rest of the story. Because that's where he buys all of his Electronics because of their excellent return policy....

update

Hi Everyone:

Jim is doing well. He's in more pain. (he thinks it's their bed) It probably is. It seems the slightest change can tilt things.

I was getting frustrated about nothing happening. All he had was a CT scan and it showed no cancer or anything wrong...which is good. But that means to the doctors, well, he's okay, so they send in the social worker. Well, she comes in with her psycho-babble BS. He calls her on it, and so they send in a Psych. (Yeah, NIH. Jim is lying about the pain for attention? So that he can live in the hospital? Cause he would rather do that than live real life? The docs called me then, asking the same questions they asked him. ..."Why is Jim in bed? CAUSE HE CAN'T SIT OR STAND. My word!!!

It's very reminiscent of when he was in hopt. 4 years ago with pain. After 2 negative biopsies, they question whether he is there trying to get drugs. Dah...

Anyway, the head head shrink okays him, and finally FINALLY FINALLY after 2.3 years of telling them he's in pain and having numerous health care issues, they seem to believe him. They send in a neurologist. He's only been asking for 2.4 years. He tried to see one up here, but other issues kept getting in the way. He did see a surgeon who read the MRI that said he had real bad issues, but then the last neurologist seen in Passavant said, "Oh, you're back is okay..blah blah blah."

My chiropactor says he thinks it's Jim's cooked flesh and nerves and tissue in his back from the radiation. I think he may be right. Who knows.

Anyway, the neurologist asked question after question, wanted to know everything and told Jim to write down anything as it comes to him. So, we'll see.

Good news is that they gave Jim another breathing test, and the "GVHD" of the lungs has not progressed any further. The doctor doesn't want to put him on that trial still because he can't make the trip every month for followup. And I don't want to make it either. But that is good news.

"GVHD of the nerves" has been tossed around a few times, and that would make sense, but treatment? Who knows.

As for the blood pressure and low heart rate? Who knows. And hard stomach that makes it hard for him to breathe, well, hopefully the neurologist will know.

That's it folks. Thanks for your prayers

This note is for Judy....Judy, I SWEAR he forgot his pillow on purpose so that Tom would have to take him to Costco, so that he could BUY another membership. I did NOT want another membership. He did. But since he couldn't get there ever, we didn't get one. Very convenient Jim. And he uses the excuse of the pillow, oh and the pants, too. lol. Is he a piece of work or what? When I take him, it's hell. He goes with his brother and they go shopping, and out to eat. (I think he was just so pleased to be with Tom that it added to his spirits.) But another Costco membership??? What about the price of gas Jimmy? Well, I guess I can't be mad to him, can I? K.

Sunday, June 5, 2011

stuff, stuff and more stuff

Hi Everyone:

I want to thank so many of you. You have been the arms of Jesus to us.

First, when I asked for prayer last week, you came through. I saw you and you told me you were praying. Some of you wrote prayers to me, some called to pray. I thank you.

Secondly, I asked for someone to cut the grass at the cottage, and I got several offers, and the grass is cut.

Third, I ask for someone to possibly ride Jim, and again I got several offers. Sometimes I write here and I feel like it's going out there into e-space, not even being sure it's being read. When I wrote the last blog, I called sister Judy and asked her to read the blog, and she said, I just did a half an hour ago, did you add something new? Some check in regularly, some not so, but it tells me you care, even when I don't have the energy to write.

I e-mailed my bible study ladies to ask for prayer. I gave them the link to the blog so they could read what I needed prayer for, as I didn't have the energy, and 2 of those beautiful ladies offered to ride Jim to the NIH, too. June, Joe and others who offered help. Stay tuned. I might need you still.

I am overwhelmed by your love, this 4.3 years into this.

I even got an offer for dinner, and stupid me didn't listen to my messages until it was too late. :) Thanks K.

So, Jim decided to go to the NIH, after he had decided not to go. It's a long emotional story, so I won't bore you. He still wants to live, but wants to be alive, not just live. So, his brother Tom is riding him down. (thank you so much Tom. You bless Jim, you bless me tremendously.) They will be admitting him into the hospital for a series of tests. He's feeling a bit better. The whites of his eyes are a little less gray.

Pray for patience with Jim to withstand yet another hospital stay.

We have been overwhelmed with all of your love. Thank you so much.

Us

Friday, June 3, 2011

heart infection, cancer, blood clot...

Well, I have to say, I am beat. I have cried all day. First with laughing, as I picked strawberries and laughed for hours at the local Wendy's with 2 dear friends, only to come home to Jim who really thinks he is dying. So, then my tears of laughter of course, changed to tears of grief. Is the heart infection back? Cancer? Blood clot? He can't breathe at times. He's got the shakes at times, and then will feel okay, Etc.

The doc wants him to go to the ER. Jim can't stand the idea of another stay at Passavant. To find what???

Here's a letter we sent to the NIH.

Dear Dr. Fowler and Team:

I am writing on behalf of my husband, James Baldauff, asking to get some direction from you in regards to what our next move should be in regards to Jim's health, if indeed we should do anything.

The last time Jim was there was approximately 4 months ago. The day we came home from the hospital, he was admitted to the local hospital. DX, heart infection. It turns out he got this infection from his port. They put in a pic line and he came home with 6 weeks of vancomycin treatment through the pic line.

Immediately after that, he started to get the chills and felt like he couldn't breathe. He again, was admitted into the hospital, kidneys numbers were rising (2.3). We thought after getting off the vancomycin, he would feel better. Because of the breathing difficulty, they did a series of tests, to find out he had a blood clot in his arm where the pic line was and possibly in the lung. That test was inconclusive. Because of the higher kidney numbers, they would not use dye in CT scan to see for sure. He is now on Coumadin.

Since that time, he continues to have difficulty breathing, but it's intermittent and often accompanies chills in the morning. We believe it's not GVHD related, but seems to have occurred along with some new symptoms, which are, a hard swollen stomach (muscles constantly flexed), more numbness and trembling in hands (which were almost perfectly healed from numbness) and a few times, sweats and shakes. He spends most of his time in bed. His spirits are good despite this.

While you are familiar with our history, I know it's not right there in your memory in the way that we live it. But it's been EXTREMELY TOUGH. What I am asking from you is whether you think you can find out what is wrong with Jim, or is it just time to let it go? We certainly don't want him to die, but it's been 4.4 years of illness and 2.3 years since the Stem Cell Transplant, and many problems. Anyway, could you please advise us. The doctors up here are stymied and we do understand that Jim's situation is complex and sometimes things just can't be determined. However, we don't have to make that decision alone.

We got a reply immediately, I'm sure from their nurse, but here is their reply.

Dear Gloria

Thank you for contacting us and providing the information below.

Certainly, in my opinion, it is not "just time to let it go".
The cancer has remained in remission, and is likely to stay in remission.
The GVHD has been an issue, and you are right to say that James has had a tough course with a lot of cumulative toxicity.
However, GVHD can get better, and the body can sometimes heal old injuries over time.

We would like to help.
Seeing him as an outpatient would likely be too complex to sort out the issues.
We could consider an inpatient admission to check medication levels, order x-rays and any other tests, and to have our NIH consultants help sort out the problem list.
Please let us know if James would be willing to do that.

Sincerely,


Now, I have to tell you. I'm not sure what to do. Jim is not sure either. I do know that I cannot do another round of driving to the NIH, staying in hotel, lodge, Shelley's, living out of a suitcase while the rest of my life falls apart.

That's where you come in. If Jim is willing, and you are willing, can you drive Jim to the NIH and drop him off? You wouldn't have to stay. We will pay for gas, hotel, or whatever.

This is preliminary because I"m not sure what Jim is going to do, but I wanted to put my feelers out there.

I again, ask you to pray for us for wisdom. We don't want to go if this isn't God's will for us, and we don't want to stay if this is what God wants us to do. So, yeah, thanks.



Us