Thursday, July 31, 2008

Another good day

As reported by Melanie - When we got there this morning, they told us Butch had gone back to the atrium fibulation - which he had two days ago, although they had fixed yesterday's problem with the bottom part of the heart. They increased his lopressor from 37.5 to 50 mg. Cardiology wanted to do a cardizem drip to lower the HR (it was around 130 beats). However his HR dropped and stayed around 65 beats on its own so he didn't need it. There is still some edema but he has lost enough that his lasix is lowered to 20 mg. IV and the cardioogist is hoping for him to be able to start taking the lasix by mouth. Food intake has improved & blood work looks good - creatine is down - from 2.0 to 1.8 , which means that kidney function is improving. Electrolytes are slightly under - gave one bag of potassium and 2 bags of magnesium IV. Much more alert tonight. The infection is clearing up very well, and - all in all - we had a good day. He talked to the Grand-kids tonight, and watched a little jeopardy and wheel of furtune. VASTLY improved - we hope to turn the corner very soon.

Wednesday, July 30, 2008

Two Weeks today - it's a better day

Melanie got here about 5:30 last night, so - that is cheering me up so much. It is wonderful to have her visit. We went to the hospital this morning, and she "took charge" . Checked out some things and talked to the nurses about potential pressure ulcers on his heels (they are going to get him heel cups upon her recommendation) and when I told her about the potential bed sores on his back side, she said they MUST turn him more often, and we spoke to them about that, also. (she would probably say - "what's this "we", Keemosabee!) and the result is - he will get an air mattress to help with that problem. We talked to Dr. Gamblin and his team this morning, also. He thinks Butch is continuing to get better - it has been much slower than we had all hoped for, but - he does see real improvement. He is to stay in the cardiac unit for awhile - heart is MUCH better on the digoxin and the lopressor - won't (hopefully) need the stronger meds, but - has what they call Trigeminy, which is a cardiac arrthmia in the ventricular section (lower - every third beat skips). Again, it is related to the surgery, and is "coming along". The bacterial infection, also is doing well - he said only small traces still showing in the blood. Butch does seem better - Melanie said she could see a difference between yesterday and today. It is hard for me to tell right now - she - coming fresh to the scene - has better judgement about this.

As for me - we are communicating with my Doctor in Binghamton and trying to adjust my medicine to get the problem under control. I do feel MUCH better. We left the hospital at noon and we actually took a 2 hour nap this afternoon - we will go back tonight. It it the first time I have tried that, but I think it is helping me to destress. I have certainly not gotten enough sleep, and I need to try to improve upon that. Tomorrow, we might drive to the Monroeville Mall in the afternoon - it is a BIG mall right outside of town. Shopping always makes me feel better!

In the meantime, Home Health is on standby, waiting for him to come home from the Hospital. The meals petered out here - been foraging for myself since the weekend - found a couple of little places quite close by that I can walk to. There is always public transportaion if I need it, but - it is not my 1st choice. Really, I want my husband , my house, my car, and my computer back! It is coming alng, just - as I said - too slowly for my tastes!

Monday, July 28, 2008

Blue Monday

The cultures that came back late yesterday turned out to be a bacterial infection in the blood stream - at the site of the surgery, in spite of the preliminary tests, which showed negative. The bacteria is called klepsiela, and his white count is up because of it. They will switch the antibiotic to a specific one for this bacteria, instead of the Zosyn, which is broad spectrum. They say he has to have this by IV for awhile, then - maybe - a pill - need to take it for two weeks - a long, LONG time.

Also the heart is still acting up. They added Digoxin to the Lopressor, and will be doing bloodwork tonight, to decide if they need to put him on Amiodiurn (I think that is right). The problem is, this last one is not good for the liver, so - they need to try not to use it. They just have been unable to regulate the heartbeat, although the doctor says the problem is coming from the top part of the heart (the Atrium) rather than the bottom, and that is good - not as serious. They are moving him to a cardiac floor as soon as a room becomes available - maybe tonight. The bloodwork is to ensure that there is no underlying heart problem - the cardiac doctor says he does not think there is, however they need to make sure. So - they will do that bloodwork, and a eckogram.

Before we went to the Mayo, Mellie and Family bought him a portable CD player. So - I have been putting on his earphones for him and he has been litening to Johnny Cash - and others, but mostly Johnny. We all know how much he likes Johnny Cash, so I am hoping it soothes him in this difficult time. At night, I use it to listen to soothing CD's - nature sounds with classical music, etc. It really does help.

As for the confusion - they are working on that. He is on a lot of drugs, and that infection is playing havoc with him, so - they need to sort it all out and solve it. Because of all this -my blood pressure is playing havoc with me. I am increasing the dosage of my medicine (I have talked to my Doctor on the phone), and we are working on it. In the meantime - red cheeks, malaise, short temper, anxiety from time to time. Hopefully we can control it.

Tomorrow, Melanie is driving down to spend a couple of days with me. I will be glad to have her with me, and she can question the Doctors with anything I have missed - with her Medical background, I think she can be a help. But - most of all - she will be moral support. My Mom and Dad have offered to come for a visit, also - we will see how the next few days goes, and make a decision then. Anyway, I am SO looking forward to having company here for a day or two.

In our prayers, let us ask God to wrap his loving arms around Butch and keep him safe from further harm.

Sunday, July 27, 2008

Sorry I skipped a day!

Today is Sunday. Yesterday I got back to the room so late that I had nothing left - pretty much needed to unwind. Butch had a bad day yesterday, and many tests were taken. When they loaded him on the stretcher to go down for a scan - to find out about the drainage, he had a bad spell of heart palpitations, shortness of breath, and general malaise, including quite serious chest pains. The nurse put the oxygen back on him - he still has it on today, and theydid an EKG. He did not have a stroke (my fear), and they diagnosed - get this - wenkebach (2nd degree AV block) - which is a temporary alteration in heart rhythm, probably caused by the surgery - supposedly harmless. Scared the dickens out of me, I can tell you - thought I was going to end up on a matching stretcher! When I left last night, they didn't have the results back from the blood testing, but they were telling me that they thought the infection I wrote about two days ago had spread to the blood stream which was definately not good. I found out this morning that it did not - thanks be to God, but it IS a nasty infection. He is on an antibiotic called Zosyn - a bag through the IV every 8 hours, and hopefully it will clear up in a couple of days. It is causing him to be confused - he is sort of "in and out" which I find very distressing, but - hopefully it will clear up soon.

I caught Dr. Gamlin both yesterday morning and this morning - he says we need to solve this infection problem, which he expects to do in a couple of days, and the kidney function (I think right kidney) also. That kidney was weak before the surgery, and it is problematic - they don't give him full dye for scans because of the weakened condition. So - I hope we are getting back on track - yesterday my blood pressure spun out of control (I wonder why!), and I doubled up on my medication. I feel Ok today - but I will keep a close eye on it. Dr. Gamlin said he has had three e-mails from people on the site asking him to review their cases - unresectable tumors from CC (I blog on there and told them all about this surgery), and last night he went on himself and read some - found it very interesting. Everyone with CC is trying to get a liver resection, as that is the only potential cure, but only 10 % of patients diagnosed are eligible for a resection. Since there are no symtoms in any of the early stages, most patients are beyond stage 1 or 2 when they are dignosed, and mets have presented, tumor is too big, etc., so surgery is not an option. This is particularly true of intrahepetic chlangiocarcinome, which Butch has - the extrahepetics show with jaundice and are diagnosed earlier. The site I am talking about is NOT light reading, and I would NOT suggest this site to the faint of heart. As for Dr. Gamblin - In return for sending him business, I want him to make Butch a walking success story for what UPMC can do for CC (not that he wouldn't anyway - he is a wonderful man). As CC is such a rare cancer (it accounts for less than 2 percent of malignancy's) and , not every hospital - even some big ones - deals in it, but the liver cancer center here is exceptional - they pioneered liver transplants in the US. As you read these figures, you can see why we consider it a miracle that Butch was accepted for surgery here.

Someone sent me an e-mail yesterday with this sentence in it -

"Life isn't about how to survive the storm but how to dance in the rain" - that is so true, isn't it? BUT - you have to survive the storm to dance afterwards!

Friday, July 25, 2008

Friday - a setback

We were going along fine, but Butch still had one drain which was draining "gunk" from around the area they operated on. It was almost stopped - that was why they took out the 1st one. Today - it started filling up with not so good stuff - pink tinged - so - stop on the discharge, running tests to find out what is wrong. They said we probably won't know until the morning - Will let you know tomorrow.

Other that that - we had a pretty good day. We talked to Brother Tom (Tom Clegg - we have two brother Tom's - Nemcek and Clegg!) on the phone. He had a procedure done yesterday himself - we are glad he is OK. Carolyn sent a card with some pictures of our golf matches - we put them up in his room, Caroline - incentive, you know. Walked 5 times out in the hall - the last time twice as long - this is MUCH, MUCH better than previous days. I took food and drink to the hospital - that V8 fusion I talked about, and other things - we have the fruit, also - so - hopefully, with the boost - he is getting some nutrition. I assure you there is almost NO value in what they feed him, but - he tries to eat it anyway. I had another wound lesson tomorrow - I am almost ready to try it. Butch is not so sick that he isn't a little worried about this - it is a gaping wound, and I have to pack it - my friend Loma wrote that she knows about this - how scary it is - but that they do much better under our care, in spite of our lack of experience. Butch and I sure hope so!

Caroline - we saw on the news that Randy Pausch passed away this morning - what an extrordinary person he was. For those of you who don't know - he was an instructor in computer sciences - here at Pittsburg's Carnegie Mellon - he had cancer of the pancreas, and he fought a valiant fight for over two years, being treated here at UPMC. His blog is available to read, and he is famous for giving his "Last Lecture" - about living live to the fullest. He made a book out of that lecture. Randy said "we don’t beat the Reaper by living longer, we beat the Reaper by living well.”

Let's see - what else is new - oh - I rode the city bus last night to go to the Giant Eagle to buy food for Butch's return - that was a delight, I can tell you. I am a dummy about these things. I noticed that everytime someone got up the loudspeaker said - for example - "stop at Giant Eagle". I said to the lady next to me - "I wonder how they computerized that, that's pretty slick. She just looked at me and said - they pull the rope! Oh well, I guess it wan't as high tech as I was thinking, after all.

My love to all of you, and - keep on praying.

Thursday, July 24, 2008

Going to Family House tomorrow

They are telling me he can go home tomorrow. They gave me a wound care lesson - home health will show me again and I will change the dressings in front of them - before I do it myself. He is still so very weak I can't believe that he can leave, but Dr. Gamblin says he will go to Family House, and we will see him on Monday (I THINK to take out stitches, and to discuss everything), and we can come home for two weeks, coming back them for follow-up. He wants him to begin chemo again late next week, but we are thinking he is too weak to begin treatments. Seems pretty drastic and sudden to me, but - the hospital is no place to be when you are sick, and - as John Wayne - said "Courage is being scared to death but saddling up anyway".

I am blogging from the hospital, so I was able to upload some pictures from my laptop. I wrote about the setup here, and wanted to shown you - you can't really see the enorminity of this place from those pictures, but - you can catch a glimpse.

Blood sugar was down to 127 today - he should NOT need insulin when we leave here (didn't affect the pancreas) - this all resulted from the liver surgery. They also THINK the pleural effusion was a result of the surgery - could be combined with the weakening from the pulmonary embolism. He is no longer on any antobiotics - which seems crazy to me - but - what do I know!
He has dilaudid for pain (I spelled it wrong the other day.

My biggest worry is he is not eating - can't get it down. That is a lot of why he is so weak, I am sure. Our long-time friend Roberta, who is a retired nurse, mailed me some great suggestions for feeding him in this condition, and I am going to stock up tonight. In the meantime, he is taking the boost. Joe and Carolyn sent us a huge basket of organic goodies - fruit, cheese and crackers, nuts, and he was most interested in organic green tea flavored like root beer that came with it - we are chilling it now - he will drink it later. Thank you - actually, I ate the salami and cheese for lunch!

Wednesday, July 23, 2008

Wednesday - one week today - making progress

The insulin level continues to drop - down to the 160's - they are still giving him insulin. The cardiac doctors came in today - for the last two nights, he has had arrthyma (?) - an irregular heartbeat. Had it again this morning. We figured out that it was happening about an hour afrer his respiratory treatment - the Doctor said this could be a side effect, and stopped the treatments. Also gave him lopressor to help. They ran a bunch of tests and said it was super ventricular tacacardia - top part of heart - and said that that is good - it wasn't atrium fibulation - that can cause clotting and would be bad. I hope we have it under control.

Dr. Gamblin was in and said he is "not quite out of the woods yet", but that once we get the heart problem under control, we need to get the liver functions normal (Billyrubin is still high), and the kidney function is not stabilized (he was actually having problems with his kidneys before the operation). Before I left tonight the Doctor who came in said only the kidney function is still bad - maybe he can come home (to Family House) tomorrow or Friday! I don't think tomorrow would be good - he is still VERY weak, but - we will see how tomorrow goes to see about Friday. Lung capacity is pretty good, and he is walking a couple of times a day - up and down the hall. He is also getting a little grouchy, which I take as a sign that he is improving - he was too sick to be grouchy before this!

For lunch - I go to the 11th floor of Presbyterian - there are 3 cafeteria's/ restaurants in Montefiore, but they are either terrible food, too expensive, or generally awful - presby is better. To get there, I take the elevator from 10 down to 8 (7 is the main floor at Montefiore), and cross the passenger "bridge" (an indoor walkway over the road) over to Presby - about a quarter of a mile. When I get over the bridge, I am on the 3rd floor of Presby (these are all on big hills), so I go up to 11. Well - when I got down to 8 today - it was pouring rain - grey skies, the whole thing. When I got up to the 11th floor at Presby - it was beautiful - blue skies, sunshine. It was very strange.

All the nursing students were in for hospital training today - and tomorrow - and the Doctors always travel in packs - a couple of "real" doctors and the students from UPMC. Every morning my shuttle (the blue line) stops at UPMC Shadyside, Magee Women's Hospital, Va Hospital, UPMC Presbyterian, Children's Hospital and UPMC Montefiore, along with the Family Houses. If you are going to one of the other hospitals, you need to catch another shuttle - the gold line , for example. It is hard to explain how big this campus really is - seeing is believing. I feel like - instead of going to Disney World - we went to Hospital World.

The people I have met here , and the stories I have heard have changed my world forever. I will tell you 3 -

1) Susan is a lady staying here at Family House with her husband Perry. They came up from their home in Tampa in January to get a double lung transplant for her (you have to be able to get here in 4 hours when you are called). Because she has small lungs, not many lungs will fit her. She finally got a call last week. When she got to the hospital, the lungs were no good, so she came back to wait some more. She goes in 3 days a weeks for treatments (she has a rare lung disease), and lives on a portable oxygen tank (as do many other people here), and time is running out for her - she is a wonderful lady.

2) When they call these people for the transplant - they call at least two at a time - in case the 1st person can't accept the lung/liver, etc. it won't be wasted. They call you in the order of need, so - you are in pretty bad shape if you are at the top of the list. The night of the operation, I waited in TICU waiting room for Butch to get in a room there. Two girls were in there, crying. I asked them if I could get them something, and they told me they were step-sisters - their Father, Step-Father was in TICU on a respirator - lungs had come in and he was next, but he had to be able to breathe on his own to receive them. He couldn't, so they passed gim by, and they were going to shut down the respirator. It tears you up to hear these stories.

3) A man and his wife that stayed at Family House - his wife finally got her transplant, and he was glad they were able to save her. While he was waiting in the waiting room, another man came in sobbing - his wife was 2nd on the list, and would not get those lungs that went to his wife - this 2nd man's wife had 4 days to live, they figured.

The moral of this story is - organs are in short supply - we need to donate ours when the time comes.

Dr. Gamblin said he got the card from Carolyn thanking him for doing the surgery on Butch - and he appreciated it. Butch talked to our grand-daughters today, and that was a good thing. We are receiving cards and well-wishes and I want to thank each of you - you are all wonderful.

Tuesday, July 22, 2008

Tuesday - out of surgery a week tomorrow

Butch developed an infection in the suture. They had to push the blood out of the suture - that hurt! Also, They put a needle between the 3rd and 4th rib to drain off fluids. He is quite uncomfortable, but - many good things have happened today, also. They took all the IV's off - until about 4:00 when the Doctors ordered IV fluids put back in. He came off oxygen today, and is breathing totally on his own. He is using the little oxygen breather to get his capacity back and did very well - 800 - better then the 750 he did yesterday when he was on oxygen!

I talked to the dietician today, and got the dietary needs straightened out, I hope. Also they will give him a Boost at each meal (boost is 250 calories - packed with vitamins and minerals). I can't control the awful food, though - institutional food at its very worst. At least we can order whole grains instead of white , and low sugar - really - they should be ashamed to feed that stuff to people that are already ill! I guess I can't control much about this situation, but I hope I can help get him better nutrition. I specifically told her about them serving him gravy 2 meals in a row his first day back on solids - she said that was SO not the right thing to do.

The Home Health co-ordinator came in and we talked. We will have them come to Family House when he comes here after discharge - to help with drains, etc. They will also help arrange for some help when we get home. Family House has elevators , so he doesn't have to worry about steps, and we should be fine here for awhile. We don't have a time frame for discharge yet - hopefully soon we will now - Butch is hopeful that it will be Friday - I SERIOUSLY doubt that, but - we will see.

The jaundice is almost gone. Did I tell you that the floor he is on is a GI surgery recovery floor - kidneys, bowel, liver,etc. They are all private rooms. They swab for MRSA upon admittance to the unit, and are VERY careful - nothing like they were on that transplant ICU, though. When I left tonight they were running magnesium sulfite and sodium chloride thru IV. They took out 1 of the J-pouches, only one left. Switched him back from heparin to lovenox, and blood glucose was 177 today - not too bad, but - they gave him a shot of insulin. His chest still kind of looks like he is a robot - wires everywhere, but they are pretty much gone from everywhere else. We walked quite a ways out in the hall - tomorrow we will try to double it. He is sitting up and eating, and taking an interest in Fox news again - even talked about the stock market being up a bit today. Still slept a lot though - little snoozes in between activity.

Pastor Bob and Carolyn Witherow came to visit today - it is so wonderful to see folks from home when we are this far away. His friend Mike Debonis - who he has known for years - called him and they talked for a time, and he spoke to his sister Carolyn and her husband Joe on the phone today also. That all brings a sense of normalcy to this situation, and it does help him. I do see him getting a little better each day. the floor aides and nurses said they are going to put me on the payroll, and that I can have a job as a nurses aide if I want - I have experience now!

When I got back here tonight - they had cooked a big ham - scalloped potatoes, green beans, and we had pineapple upside down cake and watermelon and grapes for dessert. So - don't worry about me - I am being taken care of. When Butch comes back here, I will cook for everybody to repay them - we all take a turn. It is sort of like living at a spiritual YWCA/YMCA! Also - I have got a lot done on that Christmas table topper I am embroidering - and have read many chapters of the cancer nutrition book I bought.

Monday, July 21, 2008

Monday the 21st

Well - I was wrong - it wasn't "polar infusion" - it was pleural effusion - both the nurses - Sharan and Melanie - set me straight on this last night - they sure are handy to have access to. They put a stent in to drain off the fluid - from the left lung - they drained a liter off by 2:00 - still draining, hope maybe they will be done tomorrow. There is quite a bit of pain associated with this fluid, so they changed the pain medication to deladed (he told them he couldn't double up on the Oxycontin - it snockers him). This pretty much did too - he slept through most of the day today - probably the best thing. They did get him up this morning and he walked up and down the hall a bit (with the therapists assist). he is still getting respiratory therapy, and still short of breath with any exertion, but his fever is normal now.

We received flowers and a beautiful plant today - from Mom & Dad. The plant had a real plant and artificial small sunflowers - the flowers were for me (beautiful carnations and roses) Thanks Mom & Dad.

Mom - he stayed awake long enough to watch "the Price is Right" - one of your favorite programs. Most of the day, I put the "CARE" network on - provided by the hospital. It is guided imagery - meditation and visualization - beautiful pictures of nature, along with wonderful comforting music and messages. They say this helps to speed up the recovery process, control pain and reduce stress and anxiety. It was very nice - he said he found it helpful, so I am glad I found that station.

There are a couple of things of interest - I forgot to tell you that the transplant olymics was here last week - they ended on the day Butch had his surgery. 2nd - The night of the surgery when the surgeon talked to me he mentioned that he liked Butch - said he reminded him of Clint Eastwood! I always liked Clint, and I do think Butch is handsome, but I have noticed the resemblance - what do you think? The last thing is about that pregnant young woman who was murdered - Kia Johnson - and had her baby taken out of her by a crazy woman. This happened on a street about 3 blocks away from this Family House - it is a really horrible story.

That's all for now folks.

Sunday, July 20, 2008

Sunday - a long day

Today was a busy day for Butch - they took out the epidural and the Foley Catheter. He got an injection of Lasix, Heparin (because of the blood clots in March), sucrose - to drive the potassium back into the cells, and he recieved Physical and Occupational Therapy. Sat in the chair for well over 2 hours. We were doing well, but, when we went to move him back to the bed, he became very short of breath. They are giving him breating tretments every 4 hours now. Also his temperature went up - to 101.3 - and they ran tests to fing out why - EKG, Chest X-ray, CT scan. We do not have the results yet - they are trying to find out if fluid has built up in the abdominal area - that causes these symtoms (I think the nurse said polar infusion, but I could be wrong). After giving him tylenol, his temp went back down. I will post tomorrow with the answer.

Oh yes - he is without the IV and was served a normal lunch and dinner - food looked TERRIBLE - and he did not eat much. He is quite a picky eater anyway, and , because of the cancer has many dietary restrictions. I will try to contact dietary tomorrow - they served him dried out meat covered with awful looking gravy (they said one meal was turkey and one pork - but - they looked exactly the same - and tasted the same - sawdust!), vegetables that looked like they were cooked overnight - removing any possible nutrition from them, and white everything - bread, potates (covered with that nasty gravy), and LOADS of sugar - with extra packets for good measure. I will speak to someone about this. I will take some ensure in tomorrow, I got him an apple and a banana from the cafeteria today. We will have to fix this somehow.

I am hoping that he does not have fluid in that cavity - please say a prayer for him tonight.

Saturday, July 19, 2008

Saturday - Butch goes to a regular room

Today was a good day - We finally got Butch moved out of the TICU into a room on the 10 floor - N 1078. Some people have asked about sending cards so - the address where we are staying is :

Family House
514 N. Neville St.
Pittsburgh, Penna.

The hospital is :

UPMC Montefiore Hospital
200 Lothrop St.
Pittsburgh, Penna.

Today he ate some jello, and drank some juice. Tomorrow I imagine the menu will be stepped up. The room they moved him into on the 10th floor is a private room, and very nice - bright and sunny. The operation caused him to be quite jaundiced - the 1st day I saw him after surgery, he was "shining like the sun". He is MUCH better now - the jaundice is fading, although he is still quite yellow. The Doctor says this is normal, and it will fade away. He slept most of the day, bur did manage to watch some of the British Open on TV. It will be good for him to be on another floor - it was very dark and gloomy in that TICU, and the nurse said that compared to most of their patients - he was almost well! This, combined with the Mayo Trip, has given me a new appreciation for good health, and increased my compassion for those people who have such serious health problems - being around the people who need transplants, and their families, (there are several of them here at Family House now), I have a new understanding of the difficulties and hardships that they endure with such grace and dignity.

That's all for now, folks - I'm off to sit in the heating pad. After almost 3 days of sitting in a metal folding chair next to Butch's bed in the TICU, my back is killing me! I love the new room - there is a comfortable chair for me, as well as a great chair for Butch to sit in when he is not in bed. But I want to say - all the Doctors and nurses assure me that he is doing very well. This was an enormously big surgery, and he is making progress toward recovery. I thank God every day for this progress he is making.

Friday, July 18, 2008

2nd day after surgery

Well - the posting from yesterday had two BIG errors - 1) - Butch had 3/4 of his liver (not stomach) out, and 2) - 8 PINTS of blood - not quarts! I was pretty tired yesterday morning, and my mind is not quite right yet, but - we are getting there. it is difficult to get computer access, but , it was free now. Butch is still in the ICU transplant unit, but he is to be transferred up to a room tonight. He is doing very well , the doctors say - stable, good readings, looking less jaundiced (the surgery made him jaundiced). He is having some problems with reactions from medications, and the amounts of aneastetic they had to give him, etc. but that should go away in the next few days, the doctor said. Actually, he is still sleping most of the time, but - they did get him into a chair today for a couple of hours. Hoepfully, tomorrow will be even better.

There are some women here at Family House who have been here a long, long time - waiting for transplants for their husbands, etc. They cook for us if we chip in to cover costs. Tonight we had fish and a kettle of beans and ham, along with cornbread. Delicious cake for dessert - and fruit. This is such a wonderful thing - we eat family style, and then spend some time talking together. Before the meal, we stand in a circle and pray (one of the men is a minister - his wife is ill and in the hospital here) - he asks God's guidance and blessing on each of us , and our loved ones. Very good both spiritually , and also - great food!

Our friend Bob Witherow drove back over yesterday to see Butch in the ICU - that was wonderful for Butch, and we are so appreciative.

I'm pretty cooked, so - I will sign off - just want to thank you all again for the thoughts and prayers.

Thursday, July 17, 2008

July 17 - Operation Successful

It is 8:00 AM on Thursday - Praise God - the operation was successful, and Butch is in the Transplant ICU for now - the only place they could put him at 10:30 last night. He was still under when I left him, so I haven't spoken to him - but - he is starting his recovery. The Doctor took 3/4 quarters of his stomach, and had to reconstruct the portal vein, among other things - took from 9:30 yesterday morning until after 9:30 last night. There was a spot on the left side also - so he cut that out (hence the other 1/4). They told me they gave him 8 quarts of blood.

I am going over to the hospital soon - will write more tonight. It turns out that this Family House does not have access to the internet for guests, except on a computer they have set up for the purpose, so I am writing on that computer. I suppose I could take the laptop to the hospital, but - stupid shoulder might act up, - so - yuck. Couldn't call on my cell phone from inside the hospital either - so - I am technically frustrated!

Yesterday, just about the point where I was most afraid they would call off the operation (after about the 1 1/2 hour mark where it happened at Mayo) - I looked up and saw Pastor Bob Witherow coming toward me! Mike Cogswell told him we would be here, and he drove over from Ohio to see us. He truly was a messenger from God! he stayed a while and kept me company, and I felt SO much better - thank you Bob and Mike.

All of our thoughts and prayers were heard, and now we need to pray for Butch's safe and speedy recovery.

Monday, July 14, 2008

Leaving for Pittsburgh tomorrow

UPMC called us over the weekend - the operation will be Wednesday, instead of Tuesday. So - we are driving down on Tuesday, we have to be at Montafiore Hospital at 5:00 in the morning on Wednesday - surgery scheduled for 7:00 AM - first of the day.

We have had a busy week - trying to get everything done here at home before we leave. probably Butch won't feel much like doing anything for awhile when we get home , and we will probably be in Pittsburgh a minimum of 2 weeks - more like 3, I imagine. Friday we golfed with Joe and Carolyn, and Saturday night we won the title back in our pinochle championship. We have tried to keep a feeling of normalcy in our lives - just doing the normal family stuff we always do - but - as the time grows closer and closer - we both are feeling the stress of playing this waiting game. Yesterday, we met Melanie and Glen, Samantha and Alex for an afternoon at the Ross Park Zoo. We bought subs and ate them at the pavilion, and went on the merry-go-round . As we got off the merry-go-round, it started to rain - and it poured for quite a while. We ended up sitting in their back yard, drinking Dunkin Donuts Mocha Latte's! Oh well - we had fun anyway. Tonight we went to see Alex's ball game - they were losing badly when we left to go eat at Olive Garden.

Packing is mostly done - want to hit the road by 10:00. We are going a different way - mapquest and AAA mapped us on all these secondary roads, and we got held up a lot going down last time, so we are going to try going 17 to Erie, and taking 79 down to Pittsburgh - we'll see how long that takes. Last time we came back by swinging east and taking 81, BUT - the construction was terrible, so - we'll try this route. We don't need to pack much for Butch - we will try to travel light.

I don't mind telling you that I am breaking out in hives tonight - I have been "cool as a cucumber" for the last couple of weeks, but - I am nervous now. I will be SOOO glad when the operation is all over, the tumor is OUT of there, and Butch is recovering nicely. I thank God for giving us the strength to bear up, and ask for continued guidance as we walk this path that has been set for us.

Tuesday, July 8, 2008

July 8 -Surgery one week from today

We are trying to keep busy - waiting is so difficult, and so much depends on the surgery. We had a large tree removed between our house and Irene's house - it was too close to the foundation. So - last weekend we brought in soil - LOTS of it, and spread it and planted grass seed. I was able to plant that side of the house with some perennials from my other gardens (mostly lillies and hosta - plants that light partial shade), and move plants around to better advantage - it never got enough light there before. Along with the branches we had removed on the HUGE oak tree out back - we have much more sunlight coming in back there now. The sunsetter awning gives us plenty of shade, though. So - that was the big excitement of the week!

I went up to work and attended a picnic they were having last week - it was great to see all my friends and co-workers. You might know I would show up for food! On Saturday - we had our 4th of July celebration at Mom and Dad's on Saturday, as Dad played at Picnic in the Woods on Friday. The kids swam up a storm and we had a nice time. Both our brother-in-law Joe and Alan have birthday's on July 4th - so - Happy Birthday to you both. Mom is having the 2nd cataract taken off today, and Dad goes to the Doctor tomorrow to see about knee surgery - hopefully in the next month. Butch is feeling quite well - some abdominal pain, which we hope will go away after the surgery - and he is golfing today with his buddies. I am going to take Alexandria clothes shopping - Lane Bryant is having a 70 percent off sale, and that means - bargains! That is one thing Alex and Sammy and I have in common - a love of shopping!

I just called Family House and they said to call next Monday between 10 and 1 - they will have a place for us when we get there. I hope you saw the slide show of Pittsburgh - it is very nice, although we are on the outskirts - about 1o minutes away from Pittsburgh proper - never saw downtown! Family House is wonderful - they even provide the coffee - 24 hours a day.

Strange summer for weather, don't you think? Not bad , actually - not too hot most days, overcast one minute - sun the next - rain forecast for almost every day. Sharan says there is a heat wave in Dallas - over 90 every day. I will take good old Broome/Tioga County. It is beautiful here - with the mountains and the lush green foliage. Our backyard is very busy- the birds are singing and eating at the feeder, the chipmunks and squirrels are busy all day, and when you go out there and sit - you are never alone.

We have so many people praying for Butch's successful recovery that we feel blessed. Old friends and new, along with our families, we feel surrounded by grace and love.

Tuesday, July 1, 2008

June 30 - 2008 - The Doctor's Opinion

Dr. Gamblin is a very nice, VERY experienced liver surgeon who saw us yesterday. He believes that he can operate on Butch and will do a liver resection on July 15th. He will remove the entire right lobe of the liver, which contains the tumor and the malignant bile ducts. He will then take the bile ducts which come out of the right side of the liver, which are not malignant, and attach them to the left lobe of the liver, which is already growing to compenstae for the bad right side - the liver is an amazing organ, and can regenerate itself. The tumor has grown only about a centimeter since we left Mayo, Thanks be to God, and the small amount of chemo that he had - combined with the new healthy eating habits we have adopted , have kept it in operatable range. It is about 8.3 centimeters, which is quite large - about 3 1/2 inches - they like to operate when they are under 5 centimeters, but - doable. He will also remove the malignant lymph nodes in the diaphraghm, and Butch will have chemo when we come home to catch any microscopic nasties that are floating around. We talked about radiation in the event of a recurrence, and he is going to leave "markers" in there for a guide in the future (where the malignant lymph nodes were), for radiation, further surgery, etc.

I am not sure of the length of the operation - quite lengthy, I do know, but , if everything goes well, he will be in the hospital 7 to 10 days. We can come home - hopefully - after his two week check up, and do follow up here. We will have to go to Pittsburgh every 3 months for follow up - CT scans, etc. Dr. Gamblin and his 2 associates did 2000 liver oeprations last year, so - he certainly has a lot of experience. This includes the liver operations for the liver transplants - there were people staying there at Family House who were waiting for transplants - you have to be within 4 hours if a transplant comes up for you.

The picture of Butch is in front of Family House - we were waiting to catch the free shuttle to the hospital yesterday. After all the preop testing, we left and came home - got home around 1:30 this morning - drove thru some pretty bad thunder and lightning storms but - ther's no place like home!

If you look at the picture of Butch - you will see he has gained weight - up to 166 pounds - low point was 155 - usually weighs about 180. We are very happy with the weight gain - he will lose about 20 pounds during the operation, so - weight gain is very important. Needs to do strength exercises in the next two weeks also , along with walking, etc. I think this includes painting the shed!

Alex's birthday - slide show