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

I hate satan

With me feeling under the weather and to keep it simple, Jim, all by himself, drove 1/2 mile up the road and picked up hoagies. When the gentleman went to pick up the peppers with his hand, Jim asked him to use gloves. He told the guy he had just had a STC and needed to do everything to watch for germs, etc. And this guy says, "I had a bone marrow transplant, too, 27 years ago. He had complications and skin cancer and some other things, but now he was taking care of his 87 year oldmother. As we were eating, I felt bad that Jim had to drive up there, but he felt it was an appointment that he was supposed to make. So that was cool. It was very encouraging for Jim. They didn't go into details, but it was just encouraging.

So, a bit later I searched the web, searching for info on stem cell transplant, 4 months later. I found a report/study from the NIH about coping after SCT. My stomach hit the floor and I literally almost got ill. It was so darn scary. I was going to post the link here so that you could read it, but then I thought why....why should.....

But now I'm okay. Not great, but okay. So, that's good. Today I talked with a counselor from the Bone Marrow Transplant Society. She feels that I may have Post Traumatic Stress Disorder. That was something I had said to Jim about a week ago. But as Jim said. That is something that is supposed to happen "after" the stress..."post" being the key word. I agreed, but there is no "post" cause it just keeps on going. So, I think I'm going to start some new illness like INSSD (It Never stops stress disorder). I have some new unnamed disorder, or I would have come up with some clever anagram or whatever they are called. Something like "POOPED" People Obviously Overwrought-Probably Exhausted Disorder. HEY, I LIKE THAT.

Pray for us while we travel. We both are pretty POOPED.

Come Lord Jesus. Tarry no longer.

Us

EVEN MORE PRAYERS NEEDED & pics

Does it ever stop???? I need more prayers. I'm getting sick. I'm getting a cold. A wonderful summer cold. And I have to drive to the NIH on Thursday and do the whole 20 miles with the wheel chair thing, and Jim might be admited and I have to go to the hotel, and I'm already feeling like crap, so, please pray.

Here's a few pics of father's day. Here's Jim. Doesn't he look good? Even the docs say, if you felt as good as you looked....Anyway, I was in this pic, but I cropped me out because I looked so fat. He's looks tanned, but actually that's the GVHD. He's not allowed in the sun, so...






Here's a pic of me, my sister and my dad. My dad's being bad and sticking out his tongue. It's funny, odd. He's lost him memory, but not his personality.










This is a nicer picture.


Well, we are going to the NIH this Thursday, so remember. Pray that this cold doesn't have me horizontal, or YOU may be taking Jim to the NIH.

;)

Happy Father's Day - and an open note to my friends

Hi Everyone:

Happy Father's Day, if you happen to be a dad.

And Happy Father's Day to my Jumbo who is a wondeful blessing as a father to John. (Hi Rubs. I love you and miss you. It was great having you home. Thanks so much. Can't wait to see you next time.)

Jim's blood levels this week have gone up a bit. Keep praying for TOTAL healing. They took, Jim off of Sirolimus because he had developed Sirolimus toxicity. They then put him on Cellcept, but this new medicine is causing him WORSE neuropathy. They can't give him any other type of immunosupressents, as he's tried them all. We're not sure how long he will have to be on these. I watch him try to do something like use clippers, and it makes me cry for how hard it is for him. And yet he is doing, so... His nausea from the medicines has been very bad the past week. Thursday at the doctor, he threw up, and they gave him some IV kitril to help with that. The NIH Fedexd some amoxicil... and took him off the doxycylo... because of the nausea, so the past 24 hours have been much better in the nausea department. We are awaiting word on the biopsy for GVHD, however we don't really need that confirmed to know it's what it is, but the docs said if they had a definate diagnosis they would put him on prednisone, which would be easier than putting cream on his whole body. But who wants to be on prednisone, either.

We are having papers filled out for the Long Term Disability. It's time they start asking questions like, "Can you dress yourself?" Can you sit? Dear God, please PLEASE, don't add fighting insurance companies to the long list of things I have to do.

We leave again this week for the NIH. If Jim's platelets are improved, they will remove his tooth in office (prayers are needed for that, because his platelets are still tanked, despite some improvement). Otherwise, they are going to admit him and give him a platelet transfusion, so they can do the tooth surgery. I hope there is room at the Lodge to save some money, but they can't reserve me a room because it's not certain what is going to happen. I hate the idea of driving back there again, so soon.

My (Gloria/Dolly)dear friends...those, I haven't had the time to call or write back, those who care about me? Well, Friday, I cried all day, over all things. Cried some on Saturday, too. Oh, and a bit today so far, too. I am spent. I am exhausted. I am hurt. I feel very alone. I feel abandoned by some of the most important people in my life that I have loved, despite needing them the most. That hurts the most. And I struggled with not assuming things. I am having a hard time looking at some of my relationships and thinking..."what a joke." I am fighting the slippery slope of depression, but oddly, I don't think I am depressed in the clinical sense. Today I visited my father. He didn't recognize me. My poor dad. It's so sad. I am just so sad for so many reasons. I continue to press into the Lord for my strength, to ask him to help me see the love I can't see or feel, to protect me from the evil one who wants to capitalize on my exhaustion and my hurts. I think I'm in a good place with that.

I was reading some literature about Stem Cell Transplant, and on the pages for the caretaker, I had to watch my "expectations and perceptions" (Maddy). There is so much info there about how hard this will be on me, and it never includes the 20 months of sickness before the SCT, the broken down house, and my own health. I think I have a Morton's Neuroma on my foot, probably from all the driving and walking and pushing Jim around the NIH. I remember in February, crying while Jim was in the hopt, because I was in a strange city trying to find cheap good shoes, shoes because my feet hurt...shoes on sale, because everything is so expensive. Well, my foot is in constant pain, and I have no time to get to a chiropractor, or pediatrist, etc. My annual gyny and mammogram appt., the once a year only appt, that my sister made for me 4 months ago, I have to cancel, cause it's in conflict with Jim's NIH appt. I finally got to the doctor, (my front tooth chipped, and I have cut my tongue on it for 3 months while in MD) well, he filled it in, but it wasn't done properly, and now my tongue will get chaffed for the next month or so, until I can get there again. I could go on and on and on and on. So, please pray for me. I have spent more time dreaming of heaven than I should. Obviously God wants me here, as I am here, but I really don't want to live this life anymore. I feel so numb to it, and it's not because my desires are not being met. I no longer have many desires. And I feel bad about that, because I think life is a gift that God has given to me. It's just so constantly hard and has been for so long, and no one even begins to know what we have been through. I mean...who wouldn't want heaven rather than this.

Last night, Jim and I sat on the front porch. We had our binoculars and looked at the local birds feeding at the feeder. It was really nice. I still laugh. I still want and need....??? And I love my God more than ever. But something is missing.

Many many years ago, coming out of denial about sin, self and in particular, that life wasn't about me and me getting everything I dreamed about...lol...I remember how sad it was that I couldn't go back into denial. I thought that as long as I could feel HOPE for the future of my life getting better, at least that was better than the reality. Do you remember that time? Almost like when as a child, you found out there was no santa and how the magic was gone. I remember even trying to convince myself that there was a santa, to go back, but there is NO GOING BACK once we're out of denial. And we adjust. Well, I feel like that all over again. Like, I came out of something, like when I came out of denial. But I don't know what it is that I came out of. And there is no going back, either. All of a sudden, it's like I see even clearer how fallen this world is, how fallen I am, how catastrophically fallen ALL of this is, and the only TRUE HOPE, PEACE, LOVE, acceptance, rest, joy blah blah blah is found in God/Jesus/Holy Spirit, and like the good book says, we experience a taste here, but will taste in fullness when we are with Him in our REAL HOME. Soooooo, once again that's where my hope is. So, doesn't it make sense that I wouldn't want to be there now? I used to have dreams all marked out. "Some day Johnny and his wife and my grandkids will......" some day, me and Jim......... some day I hope to ............... I don't have any of those hopes anymore. They wouldn't come to pass if I did.

I ran into a friend at the Shop and Save. He works there, and I asked him how his photography was going. He gave me his card and I checked out his website. There were wonderful pics of England, Alaska, our skyline, Italy, the Carribean. Last year's superbowl...etc. I thought. "Wow, sounds fun to be him." BUT. If I could swap lives, I wouldn't want to trade. There wasn't any jealousy (amazing for me...Italy????come on...but there wasn't.) But what is weird is that there isn't any desire for anything.

Well, I am sure I am far off track by now and rambling like crazy. I don't know what is going on. I'm sure it's more of God's work in me, but at the same time, who is this "me?" But hey, pray for me, whoever I am. Jim really really needs me. I don't need me, but Jim does. I really am exhausted.

Me

(Rachel, no more than any other time in my life do I wish you still lived in PA. :) Sorry, I haven't written you back. I'm still here though.

Part II

I noticed how the first part of my blog was wanting to find someone with a similar story so that we could get hope for the survival that is possible.

Then I said I didn't want validated.

Then the last part talked of me wanting to find someone who understood.

I got an e-mail from a friend and it helped me think through this so that I had some clarification of my own thoughts. They are:

***I do wish that we could connect with someone with a similar story for that hope.

***I don't need validation for my many feelings, but I do tend to want it. Something I've always struggled with. Now is the the time to REALLY NIP THAT IN THE BUD. I think it's silly of me to expect people who have not walked this to understand, and me wanting them to puts a lot of expectations on them, and has me struggling with more feelings.

The problem is: If you know me, I'm not into pretending...that much. So, how else do you have a relationship with someone then?

"beets" me

Gloria Shrute

PS. JIM HAS TO LIVE. I will not make a good widow for the second time. We finally got the estimate to have whole house air conditioning installed. (one floor, mind you.) The price? $12,000.00. It took all I had not to laugh in his face. Jim is just going to have to get better and do it himself. twelve thousand dollars. Do they think we're nuts?

All by ourselves, Part I

I know I won't be able to finish this, so this is part one. I have to go to the dentist. But I wanted to just share this.

We feel so very alone in so many ways we can't even begin to understand it ourselves, let alone explain it.

One way is this. Jim has sooooooooooo many issues. And I literally spend hours looking for some type of info, someone to connect with, someone who can say, "Hey, we made it and we can relate." I have joined yahoo groups. But there wasn't a Stem cell group specifically. There were a few cancer groups, but you have to spend hours searching for messages relating, if there is one. There isn't. Another of the yahoo groups has gone from a cancer group that people stopped connecting with, to a place for people to pick up prostitutes or something. Yeah, that was nice.

I have looked up blogs. The few blogs from people with SCT or Bone Marrow Transplant (BMT), which is the same thing, and we either cannot relate or they are dead. I'm not showing Jim those ones.

Even the Lymphoma Society forums don't have anyone who has gone through what we have gone through.

So after a few more hours, I found through the bone marrow foundation that they have a video called, "the new normal" for people who have gone through this. Well, long story short, we viewed all 8 episodes on you-tube, and they talk about "I knew I would lose my hair when I had my transplant...." Dah. How about having someone on those videos who lost their hair 5 separate times because they had 5 types of chemo before their SCT. But see, they don't really exist. So, no one has the amount of neuropathy that Jim has. No one had the setons, the years prior, the bowel problems, etc. etc.

A lot of SCT/BMT patients are patients that have a certain few types of leukemia where the only cure is a transplant. So, they didn't have all the years of sickness before. Some of them didn't know they were even sick.

So, all of that just to say, we wish there was one person out there whose story was as bad as Jim, so that Jim could get some hope that his life may one day have some normalness about it.

The new immune suppressant they have him on is causing more problems, problems he has because he's been so sick for so long.

One of the caregivers stories on the video was about "taking time for yourself" and blah blah blah. Yeah, I can do that in some way. But those care takers don't have close to the story. And nobody can understand unless someone else has gone through it. And it's not that we want to be validated. We just want to connect with someone who knows....who really really knows.

I love my neighbor kids, and they like to come over to swim, and they have for the last 2 years. The 2 little ones though, I have to be in the pool with them. And I was doing this as a way to tell them about Jesus, too. Well, I'm cleaning my window screens on the table (thanks, Johnny for all your help) and all 3 of them come over. Of course I didn't take them swimming, but I tried to explain to them about how things are a bit different. And they told me their mother told them I might be busy. Her father died of brain cancer this year, so "she knows." I have to call her and tell her that I will put a green circle up on the railing when it's good for them to come swimming, and it might not be green much this year. But will she really know? No, or they wouldn't have been over 3 times already.

I get so weary of trying to explain so that people know. And people can't empathize and such, but they don't know. It would be like me saying I know what it's like to lose a child. But I don't. No matter how hard someone could tell me, I don't know. But there are groups they can go to and talk with others who have. I just wish I could read one story, here one story, talk to one person.

I think it would help us not feel so very alone. And it would give us some hope.

Okay, I'm rambling now. I'm done. Time for the dentist.

A Day in the Life of an outpatient at the NIH

Hello everyone:

Below is the details of our 3rd and last day at the NIH before coming home. There is no exageration going on. All events are actual...unbelievable, but actual. This day is very similar to EVERY day that we have gone to clinic since Jim has been an outpatient.

***We leave the hotel 20 minutes earlier than normal because of traffic. As we enter the garage, our car is searched for explosives. They do this every time. It's okay, particularly in spite of what happened at the Hollocaust Museum.

***I park the car and go and get the wheelchair. Wheel Jim into the hospital and get the parking ticket validated.

***The first stop is the voucher office. The NIH reimburses for hotel stays (to 50 dollars a night) and mileage for travel. It usually takes 3 to 4 stops at the voucher counter because they NEVER GET IT RIGHT the first or second time. I had gone to this office 3 times the day before and finally got all the info right. I bring them the "zero balance receipt" I am told I will need from the Hilton, but Tiffany tells me that it doesn't show how much we paid, so I need a different receipt. I will have to go and print one out.

***But first I wheel Jim to his dermatologist appt. It's in the old section of the hospital on the 2nd floor, about 1/4 mile into the hospital. I wheel him there.

***I leave and walk 1/4 mile back to the main part of the hospital to print my receipt for the voucher office. I go to the business center on the 1st floor. The security guard cannot find his keys. When he does, he allows me into the center. The printer says. "OUT OF ORDER." The others do not work either.

***I go up to the 7th floor to the library. They have computers and printers there. For some reason they are not open.

***I go down to the 3rd floor to the day hopital Jim goes to. There is a room there that has a computer and printer. I don't even ask. I go in, go print the receipt.

***I take the receipt to the 1st floor voucher counter.

***I go to the 2nd floor and walk 1/4 mile back to Jim. The docs come in, and once again they want to do a biopsy of Jim's skin to guarantee the GVHD. They want to do the chest, but they did the chest the last time and it came back inconclusive. Jim suggests a spot on his arm which is much better, and they proceed to do a biopsy, as well as look over Jim's whole body. They prescribe 3 separate creams.

***The pharmacy is a world of it's own. Sometimes it takes 2 hours to get meds. So, I walk 1/4 mile back to the main hopt, go down to the 1st floor to plug in Jim's name so that the wait is shorter for the meds.

***I walk back 1/4 mile to 2nd floor to Jim. The biopsy is done and we are ready to go. The doctor informs us that the PA wants to see Jim at the Day hospital.

***I push Jim 1/4 back to main hopt. We go to 3rd floor, and there isn't a room available and we have to wait and wait and wait. I go down to the 1st floor pharmacy. meds not ready.

***I stop at voucher office to check on status, and there is a problem. I walk to front of building to get a phone signal to call Judy at the voucher office, she will take care of it for me.

***I go back to voucher office and tell Tiffany. She says, okay. Come back at 12:00 p.m. I hold back scream, as I am used to this.

***I go back up to Jim. He's still waiting. Infectious Disease wants to see him because of something the Derma people saw. Finally the doc comes, and we have to go to the day hopt. because there is a room over there. So, I push Jim to the other side of the hopt. The doc examines him and makes all these changes, but it has to go through our PA. So, I push Jim back over to the day hopt.

***I go down to the pharmacy. The prescriptions are ready.

***I bring them up to Jim. Jim tells me the one for his face is the wrong prescription.

***Back down to the 1st floor and I tell the pharmacist. He says, I have to tell the derma people.

***I walk 1/4 mile back to 2nd floor to tell derma people. They change the prescription through the computer.

***I walk 1/4 mile back to 1st floor of main hopt. to pharmacy. I tell the pharmacist and give him the wrong meds back, and I have to sign in again....(I again, hold in my scream.)

***I go back up to the 3rd floor and Jim still hasn't seen the PA. She has "so many other patients she has to see yet."

***Jim spots the research nurse and asks the questions that we needed to ask. They changed Jim's immune supressant drug. I looked it up on the computer, and it causes numbing/tingling, (EXACTLY WHAT JIM DOESN'T NEED.) She says that it doesn't cause that.

***Also, the meds we received at the pharmacy the day before have no instructions on the label. I ask her and she says ask the pharmacy.

***Back to the pharmacy to find out that there are ALL KIND OF SPECIAL WAYS TO TAKE or not take these meds. SIGH.

***Back upstairs to 3rd floor to Jim. He nabs the PA in the hall and they iron out all kinds of other issues, and once again find them in error on several points. One of the points is bringing up the question about the new immune suppressing drug that the other nurse say won't cause more neuropathy. The PA says that is could, but Jim's out of choices for meds. Yippee.

***We leave, go to the pharmacy and get meds.

***Go to the voucher office and pick that up.

***Wheel Jim to the car and we're off.

***Now, I need to stop and get water, gas, food, go to the bank, and then drive all the way home. Then I have to unpack and get meds and give Jim a shot, etc. I got to bed around 2:00 a.m.

It was 1:00 when we got out of there that day. The 1st day was more of what I described, but we didn't get out of the hopt. until 8:30 p.m, after being there all day. And the following day, we were there all day as well, getting out about 7:30 p.m. And I wonder why I am tired.

Anyway, this is what it's like there. And I didn't go into all the snafu's either. Amazing, isn't it?

Today, Jim is exhausted, and I am very down. We hope that someday we can say "it was worth it."

coming home

WE ARE SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO IN TROUBLE IF WE EVER GET GOVERNMENT HEALTH CARE.

This place is a zoo. I've said it all a long. They are GREAT at saving your life and then making it a living hell. LOL.

Well, we are coming home tomorrow, after he is seen at the dermatology clinic. Jim basically hasd GVHD all over his body, including his mouth. We have to come back in 2 weeks to get Jim's tooth extracted. They will admit him into the hopt. because he will need a platelet transplant. His blood numbers are the worst ever. Last night they gave him a bolus of saline because his kidney numbers are high. They are high again, and he's getting another bag. Two weeks ago, they said, "You're magnesium numbers are fine. Stop taking the mag." We just looked at each other and thought in our heads. "YOU'RE NUTS." If the mag numbers were high, yeah we would stop taking it, but when you are taking 500 mgs of magnesium 3 times a day and the numbers come up "okay" in your blood test. HELLO. So we went down to twice a day instead of dropping it altogether. Thank goodness. Because after Jim is done with his hydration, they are giving him liquid magnesium. Sigh. What else. Now he needs neupogin 3 times a week instead of 2. I hate giving him shots. What else...oh tons, but nothing big.

Despite the high fever it has come down to this scientific information. Jim looks good. Hey Tom, you should have been a doctor.

So, we're going to stop at Mineo's on the way home for that pizza.

Thanks for prayers. please please PLEASE pray that God would miraculously heal Jim's blood totally. He isn't even producing bone marrow in his spine. It's a miracle that he does look good. So, please pray for that. Thanks.

hi temp

Well the CT scan shows nothing (which of course is very good news, not that we thought the cancer was back, but it's still reassuring). His temp went up to 102 last night and I finally demanded he take tylenol. His kidney numbers were way high and he didn't want to take any. They gave him a bag of hydration while at the day hopt., and they took tons of blood. They have to find something. My guess is the tooth is infected. They did everythin from Lymes to Swine to West Niles, I think. Then I told them that he drank the water up the cottage, and it's well water and never been tested. So, that includes a bunch of tests. But we've never gotten sick and the water is delicious, so....we shall see. But he's misserable.

Thanks for your prayers. Nice to hear from you 3. :) MJ, TELL ME ABOUT THE TRAFFIC ON THE BELTWAY. Now you know why it sometimes took 3 hours for a 1 hour drive. Accidents every morning. Sheesh.

NIH

Hi Folks:

(K) we leave for the NIH 9:30 a.m this morning. Jim's fever spiked and he couldn't shake it, so they gave us an hour and 15 mins to pack up. Jim's getting a CT scan now. We were due to come tomorrow, but they called us in. This was better than going to Passavant, paying another 250.00 only to be transferred here in the morn.

I'm off to try and get a hotel. I hope priceline still gives good deals now that it's travel/vacation time. We shall see. It's been a crazy day. I'm constantly shellshocked.

Cottage Hell - Cottage for Sale...possibly

Hi Everyone:

Change of plans this past weekend. John screwed up when he thought his buddy's ordination was, so he's coming this weekend. So instead of us going up to the cottage this weekend, we went up last weekend, so that we could see Johnny and he could help us with things.

Big mistake. As I told some people... (Jim should have been one of them) The last thing I want to do after being away from home for 6 months...almost 7 is go away for 4 days. Plus, we needed a new hot water heater. What would have taken Jim 2 or 3 hours now took Jim 2 days, tears, cuts, swollen legs, more petinchiae, high fever, etc. The tractor broke (Mark fixed it, despite nobody thinking it was possible) The grass was high, blah blah blah. The golf cart is making funny noises. I was misserable. I just should have stayed home. The hardest part was allowing Jim to continue in the insanity of installing a hot water heater (he also had to take off the door jamb to fit it in. Door jamb remains in the bedroom.

If Jim's neuropathy doesn't improve, we are going to have to sell our beloved cottage. At one time, that would have felt like death to us. Still does to Jim. Me...well, life feels like death, so what the heck. Put a for sale sign up now. Life, for me, has been walking a pretty steady path of letting go since around the age 16. Oh, it's not easy, but I've had to do it. The letting go of places, things, and the worse kind of pain, people. I really didn't want the Lord to spare my husband's life so that we could drive 2.5 hours and work so hard it brings him to tears and swollen feet. So....???

Anybody want to potentially buy a cottage that may potentially be up for sale?

Jim's temp is too high. He's on the phone with the NIH now. Not sure what is going on. Are we ever? This continues to take it's toll on us, our relationships, our van (sounds like it's falling apart) our finances, our dreams...OUR SLEEP. ;)

Seriously, the driving back to the NIH and on the the beltway and such is hard stuff. If you pray for us, pray for our van, too. It's still good. We want it to stay that way. If I had to go shopping for a used vehicle in the middle of this, I think it would be the straw that broke the camel's back.

Us

I can't believe it

I CAN'T BELIEVE HOW MANY OF YOU HAVE NOT HAD MINEO'S PIZZA.

Jim and I were watching Channel 13 "old Kennywood." And I'm all nostalgic and sad. I just read Amy's post (I responded Ame, go read it.) And she's not had Mineo's and now she's leaving Pittsburgh forever. Well, if you've never been to Mineo's or Kennywood, well...Yinz ain't from Pittsburgh.

Thanks so much for your encouragement, all of you, encouraging me to be me. I'm so hard on myself. My friend Rach e-mailed me and hit it on the head. It's not that I try to be everything to everybody, but one on one, I would talk different ways to different people. For instance. If I were to say, "I want to die" to my sister, she would know that I'm having a bad moment. Karen would think I'm having a bad day. K might say, "that's how I felt yesterday." Somone that I don't know well from church may say, "I thought she was more spiritually mature than that. So, when I write here on this blog, there are all kinds of readers and I end up worrying that many of you will misunderstand or won't get it. See, what I mean. Sometimes I just want to talk about the Lord or Jim, or not Jim at all, but then I try to remember the audience and it gets all convoluted. So, thanks for your encouragement. I'll just keep being me.

Another thing that I've really discovered throughout all of this is that not everybody is for everything. I've learned that certain women are the "go to girl" for this, but not for that. And it's not a contest or a matter of this one is better than that. It's just learning about people and myself and expectations, etc.

So, anyway. Jim continues to push and push himself trying to get strong. It's working a bit. But he's so exhausted. My concern is that as the day goes on, he gets more weary. I watch him stumble more, and I'm concerned that he's going to hurt himself. He trips. He loses his balance and almosts fall.

His neuropathy continues to cause him great pain and problems. He has petikei (pa tiki eye) which can be liver problems, from low platelets...a lot of things. He went to the doctor today. All he got there was a big hug. But we love our doctor, so that was good. His blood was taken, but it's not the NIH, and it had to get sent out, and who knows how long it will be until the NIH gets it. We don't know what his red blood cells are, his white, his neutrophils, his platelets. It's worrisome. His last PET scan, while it said there is no cancer, it mentioned some really weird stuff.

Well, Jim was going to do the cooking of dinner because he likes to cook and because I have so much to do. I think once in a while will be okay, but it's just too much for him. So, our church is cooking for us a bit. Thank you church for once again standing in the gap by providing meals for us. You are so good to us. We hope to see you soon and come to church in our pew. MAYBE THIS WEEKEND. However, we really shouldn't be hugging. So, if we see you and don't hug you, know it's just for Jim's protection.

Let's see...what else. OH....WELL, WE CONNECTED OUT DIGITAL BOX FOR TELEVISION, AND IMAGINE my wonderful SURPRISE when I opened the box and saw yet ANOTHER REMOTE CONTROL. That's like 6 for the TV in the livingroom. And the weird thing is...all those buttons...what are they for? We press on/off and the up or down arrow and volume. Did you ever think of how many buttons you press all day, whether it's on cell phones, computers, remote controls, etc.

Okay, well there were bunches more of things I wanted to say, but I'm tired. Sorry this is long, but....oh wait. No I'm not. That's me. Long winded and jumping from thing to thing tonight.

While I'm jumping, I want to jump to Australia. Gary, you out there? You okay? I'm thinking of you from this side of the world.

It sure feels good to be home. I worked in the garden today. How nice.

Niters
Gloria

Correction

Okay okay. I guess I'm getting a bit ahead of myself. So....

Jim's trip to the store, wore him out. There is no way he's getting hellegrimites or going fishing this year, and I have to carry the hot water tank into the cottage with a dolly, and he will need help putting this in. (this is not a hint. We have an offer for help already.)

I feel like I lose no matter which way I write something sometimes. I don't want anyone to assume that Jim is all fine and dandy and we don't have any needs. We do. But when I do mention other problems, I don't want people thinking we are hinting to them. AND, I don't want to be hinting to them either. The Lord is speaking to people's hearts about our needs, as I bring them to Him. I just want to tell it like it is, but it has often been so heavy hearted, it's hard to continue to write the hard side of everything.

It's a little bit like relational game playing here for me sometimes. Write only this. Say only that. Hint here. No, that's manipulation. Trust God. Share in the good, no Jim still needs prayer here. I still need prayer here...blah blah blah

Pittsburgh Stuff

Well, I had MANCINI BREAD. Oh, it's the little things about your home that you forget. They can keep their blue crabs down there in Maryland. We have Mancini Bread. And Mineo's pizza, but we didn't get that yet. Oh, and when I garden, no frogs, toads, turtles, snakes, skinks, and plague of all plagues....ticks. Poor Bob and Shelley sometimes were picking 5 ticks a day of their kids. Well, I say that all tongue in cheek. There are many things good in all places. Like who would ever want to live in Detroit for instance???? Um, hockey fans maybe...

Well, There is your spunk for the week. I try to be the old me, but it's not to be found. I mostly just want to vedge and hibernate and think. I've been so busy, I've not done my bible study like I had been doing, and I miss the intimacy with God, so I need to already regroup and put things in a better order.

I haven't even begun to go through the tons of e-mail, other mail, etc. I have to go to the bank, still solve the floor problem, and tomorrow, I'm going to see my daddy. "Gonna wrap my arms around my dad and tell him that I missed him." My sister says that he mumbles a bit. I know I'm going to go there and cry cry cry cry cry cry and cry. I'm going to want to take him out of that place (despite that they treat him well, and since we've moved him out of there, he's not been in the hospital once.) I'm going to want to rescue him. And I know I won't be able to.

Does anybody remember last year when we were up our cottage, one of the few times we got to go up there, with the understanding that it could possibly be the last time I was ever up there with Jim? I got a call from my dad's personal care home. He had to go into the hopt. again. And, the personal care home said they didn't want my dad back, and I had like 3 days to find a place for my dad? Remember that, and how terrible it was (much more to it than that, but it was bad.) That was one of those times where like Tevye I would think. "Now did I need that now, Lord?" Well, I just want to say, yes, I needed that now...well, then. It was hard with a sick husband finding a place for my dad, but the new place, while it was double in price, my dad has not been in the hospital once. At the old place he was at the hospital twice a month. God took care of that for me and my sister, just in time to get Jim down to the NIH. And that "last time" up the cottage. Well, that wasn't the last. Or at least that's the way we see it. We hope to get up there soon. Maybe after our next trip down the NIH on the 11th. And, miracles of all miracles, Jim might actually be strong enough to install the new hot water heater we need. So, there you have it. Life is strange.

Keep praying for Jim. He still gets a temp every night. He's still retaining water. His rash is still there, and now he has petechiae, and his blood numbers are scary. That's part 2 of his healing Lord. And we are waiting for your love to come down Lord, in the final healing of my DH.

Yesterday, Jim drove himself to the store. Amazing Grace.

Gloria