Joyce & Butch Clegg

We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord (2 Corinthians 5:8).

2008-10-10T21:45:00.005-04:00

I have the saddest of news to tell you all. My sweet husband - my best friend - passed out of this world into the arms of his savior last night at 9:26 PM, here at our home. The sadness is for me - that I will not see him again on this earth, and how much we shall all miss him. Our Grandaughters are just broken-hearted, and Mellie is so sad. He was such an anchor for our little family, and I am so happy the Lord loaned him to us for the time we had him. I am happy for him - he will not suffer any more pain, and he is in a place where he is whole again. I wll see him again one day, and then we will be together forever. His passing was calm and peaceful, and so many amazing things happened last night that I can hardly believe it. We talked last week about his letting me know that he made it home, and how difficult that might be to do. I reminded him about that promise several times - just yesterday, as a matter of fact. Well - at 9:26 last night, many things happened, and one of those things is that our jockey light - out front - which is on a timer to run from 7:00 to 11:00 PM - went out for the night. Tonight it is back on it's 7:00 to 11:00 schedule - nothing has been changed or touched! I take that to mean that Butch is home safe.

Services will be on Sunday at our church - New Life Ministries, in Endicott. Calling hours from 2:00 to 3:00, followed by a service.

Dignity does not consist in possessing honors, but in deserving them. - Aristotle

2008-10-06T08:09:00.005-04:00

Another October morning - a crisp 44 degrees - Autumn in New York. Butch is still sleeping (it is only 8:10 in the morning). We had lots of company yesterday - Mellie, Glenn and the girls came over in the afternoon, followed by Carolyn, Joe, Matt and Raven for a few minutes. We were able to have a good conversation with Samantha and Alexandria, about the things that are important to Grandpa (studying hard, respecting people, etc), and we talked about all the good times we have had together - it was a good talk. Butch watched the football game, and I made some soup in the slow cooker, and apple crisp with fresh apples - I told you, cooking soothes me, plus - I usually make only things I like to eat! He did eat a very small piece of apple crisp, which made me happy. Sharan is flying in from Texas today - Alan will meet her in Syracuse and bring her here. She is going to stay with us for awhile - She has many, many years as a hospice/home health nurse, so she will be invaluable to us, to say nothing of the company for me - I am so grateful. She has been ready to leave for a month - just waiting for me to say the word. Actually, just knowing that - that she was there and ready to leave - has been a comforting thing for me. Alan was coming to visit today anyway (and take the Sunsetter awning down for the winter for us), so I asked him to come (from Ithaca) by way of Syracuse. I believe Mom and Dad will be here for a few minutes today, also.

Saturday was a beautiful afternoon, so we managed to get Butch down to the car, and we went for a ride down Route 26 to Whitney Point. We stopped at the Country Wagon, and I bought us some doughnuts (he didn't eat his - I ate mine!), then we came back Rt. 81. The trees were lovely, and the clouds were outstanding - we saw them take many shapes. Do you remember when we were kids - laying on our backs and looking at the clouds - imagining that they were many different things? I used the apples I bought at the Country Wagon to make that Apple Crisp, as a matter of fact.

The hospice people are very nice, and also very accommodating. They have brought us a wheelchair, in addition to the walker we already have and the oxygen. They (Dr. Gehring) have put Butch on a 24 hour pain medication called MS Contin (morphine), and it works very well for him - he is in NO pain - however, he is very confused from time to time - it causes a lot of trouble, I can tell you. We will use the other medication - the original - for break through pain as it occurs. They are also bringing him some Ativan today (for agitation). They will be bringing in a hospital bed and we will put it in the living room. I will be able to put the sides up to protect him - two nights in a row, he has gotten out of bed in the middle of the night, and he is too weak to manage by himself. The night before that, he fell, and I had a very difficult time getting him up - luckily for us, nothing broke, but it very easily could have. He and I talked and agreed that this is the best route to take. Dr. Gehring is scheduled to make his house call on Wednesday, and we will talk with him then about anything further we need to do to ensure Butch's comfort, and safety.

The other problem we are having is that the alarm is going off on the oxygen condenser - it doesn't shut down, it just goes off - mostly in the middle of the night - kind of a high pitched noise that startles us. They are trying something and - if it doesn't work, they will replace it with another. We do seem to have an inordinate amount of things go wrong, don't we, but - I guess that is just life today. When everything is said and done, we are grateful for all the support - I couldn't do this by myself.

Believe that life is worth living and your belief will help create the fact. - William James

2008-10-01T07:40:00.007-04:00

It is a crisp, autumn morning. The temperature is 51 degrees, the sun is coming out, and the leaves are turning, bit by bit. The "Frost is on the pumpkin" . Our lily is still in full bloom, and every time I look out my kitchen window, I see it standing guard in our yard. I love this time of year. I told Butch that I would love to take him for a ride to see the foliage, but, we need to pick a good day - we'll see what happens in the next day or so. They brought the oxygen yesterday , about 5:00, and it is helping him already. We have the compressor here in the computer room (actually, it makes quite a bit of noise), along with hose to reach almost everywhere on this main floor, and they brought some portable tanks for when we go out. Butch was VERY logy yesterday, and I am hoping the oxygen will help him to perk up a bit.

Hospice will be coming Thursday morning to have the papers signed, and begin to take care of us. Butch made the decision on Monday, and we called then and set it up. He recognized that he was failing a bit, and that their services would provide a level of comfort and security that would be very welcome. As I said before, if he improves in the future, he can go off again - the nurse who came last week (Susan) said people go on and off all the time. We are both comfortable with this decision. We will learn more about what to expect on Thursday.

I don't know if I ever told you about the parasites? Well, in researching CC, I discovered that there is a group of people seeking help from the veterans because it seems that Vietnam veterans are getting CC in large numbers, because they ingested parasites from the water supply in Vietnam. The parasites died, but damaged their bile ducts so that now - 30 or 40 years later, they are getting bile duct cancer, which is very rare here, far more common in Vietnam and surrounding countries. Do you know what Butch did in Vietnam? He was a Medical specialist, testing the water supplies for parasites. I have a picture of him, in the Lab there, with the water bottles and equipment - no gloves, nothing. Anyway, I am working on the paperwork to submit to the veterans for a claim. I went to the Owego Veterans on Friday and they are helping me with this. They contacted Buffalo, and have told me what to do to expedite this claim. The thing of it is, the government is aware of this, and they have chosen not to issue some sort of public service announcement to veterans - warning them to get their bile ducts checked. It could have saved Butch's - and how many others - lives, but they have chosen to be silent - you see, if the veterans die, it won't cost them any money (you have to be alive to file a claim), and - the almighty dollar reigns. So, I am going to try to shake things up a bit - at the very least, cause them some trouble!

I am going to make banana bread this morning - actually - blueberry -banana bread. Carolyn gave me a recipe, and it is delicious. I will try to tempt Butch, but - he probably won't eat it. It is the thing that just drives me crazy (well - more crazy than I already am!) about this whole situation. I understand logically that the cancer itself makes people nauseous, and food unappealing (it changes the body chemistry, so that the tastes and smells are different) , but I CAN'T get it through my fat head that he is unable to overcome that, since he knows that his life depends on eating and drinking. He is eating smaller and smaller amounts each day, and it is not enough to sustain him. Even with the bene-calory and the ensure, he probably is not getting over 1200 calories a day. It just drives me to distraction. The nutritionist from home health came out the other day and gave me some suggestions, and I am trying some new foods. I had been trying to tempt him with chocolate, and it turns out that he hates chocolate now! Thursday Carolyn is bringing us a lemon meringue pie - he asked for it, and hopefully, he will eat some. Whenever I feel low, baking always helps - it cheers me up a bit. Problem is, all those calories that Butch needs so bad - I don't need at all!

I thank God every day for the blessings of my life. At least we live in a time when we have the services of hospice available, and so many friends and family to help us through this time . At least today, there is adequate pain medication available so that people don't have to suffer as they did in former days. At least I know that they are working on a cure, and that someday , there will be a world without cancer. Imagine - I still have my parents - what a comfort! I talk to my Mom every day, PLUS I have Mellie, Alex and Sam (uh-oh - I better mention Glenn or I will be in trouble). I have a job I have always loved in which to bury myself when I return to work, and great friends and co-workers (and bosses) there waiting for me. We have our church community holding us up in prayer, and offering friendship. We do feel that we are surrounded by love. Butch and I have had a great marriage, and there are not many regrets here. The 11th of November is our 13th wedding anniversary. And lastly - I can't forget Flashy!

The doors of wisdom are never shut. - Ben Franklin (1706-1790)

2008-09-26T19:39:00.009-04:00

This has been a pretty busy week. Butch's friends have stopped in to see him in the afternoons, along with Caroline, and that is very good for him. I believe that he has enjoyed these visits, and they are very meaningful. I made apple pie from the apples Irene brought us, and it was pretty good - a little tart, but - I like it that way, Butch didn't eat too much of it, but - I did! Carolyn brought over some chili, and it was delicious. Butch has been eating a bit better - not enough, but more than before. Today it rained most of the day - we need it bad, don't we? No rain for 11 days, they said. Oh, and I took him to his barber yesterday - he shaved his beard off for him. He feels much better without it. Did I mention that he has gone back to reading the NY Post every day - I am hooked on it also - he reads the sports, I read the gossip columns!

The Doctor made his house call this morning. His nurse called and said he would be here at 11:20, but - he came at 7:30! I was in my pajamas, at the computer. Butch was in bed sleeping. After I gathered myself together, and got some coffee down, we all gathered in the living room and talked. He gave us some samples of nexium (the purple pill) for Butch to take to get rid of that acid reflux - it has only happened once more this week, and he said he can take more than one a day - 1/2 hour before meals, twice a day. We discussed the nausea, and he said he thinks a lot of it comes from the anti-biotics. He has only a few more days on them, so - we'll see. He takes two different meds to keep the nausea down, but he still gets sick. Dr. Gehring said they would call Lourdes Oxygen today and get it set up for Butch. He has a really hard time breathing when he stands up, and we think the oxygen will help him. The Doctor thinks that comes from the cancer - where it has metastasized to the diaphragm is pushing against the lung. This has probably also contributed to the fluid collection in the lung. So, hopefully, the oxygen will give him some relief. As for the jp pouch, it is not draining and Dr. Gehring thinks that is ok - we see no signs of infection - temperature is normal, so - he says - let it go. We also discussed Home Health versus hospice, and Dr. Gehring is Ok with Butch's decision to stay with Home Health a bit longer. He said, as I have been saying for a few days, that Butch seems MUCH better this week. Since he will be coming to the house to visit, and Home Health comes twice a week, and we can have oxygen, and the pain is under control with the medication that we are using, he feels we are good to stay this way for now. I must tell you, however, that the results of the CA 19-9 were not good - 10,349.8 (up from 6500). That tells us that the tumor progression is rapid.

We had been getting a PT INR weekly, and Butch was back on 5 mg. of coumadin. Well, Endwell Family Physicians called me the day before yesterday, and Butch's protime was 8.9! Normal is 1 to 2, they keep his above 2 so as to not get a blood clot - 8.9 is off the charts. If he cut himself, he would never stop bleeding. I went down to their office and picked up a vitamin K pill, he took it, and we stopped the coumadin. We have checked it since, and it is 3.9 - going to have it checked again tomorrow. Dr. Gehring said the big number is from the cancer also, and he probably won't need any more coumadin. I am a little confused, as I understood that liver problems cause blood clots, so he should still be protected, but - as long as we check it and keep it between 2 1/2 and 3 1/2, I hope he will be OK.

There was a posting on cc.org last week talking about new trials beginning soon - by the Mayo Clinic. They will be testing some new chemo's that have been developed for advanced stage CC patients. Of course, this is the beginning stages of the tests - it would be years before anything came to market, but - it is wonderful news at any rate. There are many other things going on in the CC cancer world - we (the chlangiocarcinoma foundation) have developed brochures which we are all going to hand out to local doctor's, oncologists, cancer center's, etc., to spread awareness of CC. And then of course there are the letters to Oprah. These things which we are doing ease the pain a bit for me - I know that these steps toward a cure will someday mean CC will be beaten. I pray the same is true for all cancer.

The 2nd bud opened yesterday on the lily in the yard - I look at it often. It reminds me of God's promise.

Do what you can and then pray that God will give you the power to do what you cannot. St. Augustine (courtesy of Loma)

2008-09-22T13:58:00.006-04:00

The hospice nurse came this morning and we talked with her for a couple of hours. She explained that hospice will provide palliative care only - Make Butch as comfortable as possible - but we would not be able to get CA 19-9's very frequently, as that is a measure you would keep if you were in active care - chemo, for example, even though he can go off hospice at his wish. How would he know he should go off if we don't have a CA 19-9 to go by? Butch is not entirely ready to give up that option yet, so - she suggested we exhaust what home health has to offer before going on hospice. I have a call in to home health, and Dr. Gehring. He is scheduled to come out here on Friday, but some issues have come up first. The JP pouch has almost stopped draining - we don't know if this is bad or good. Also, last night, Butch got some bile tasting stuff backing up in his throat - he had to sleep in the recliner, instead of flat. What is this? And - could we get another CA 19-9 this week to help with his decision. Lastly, I think he needs some oxygen to help him along - he gets so breathless, it is just awful. He will make a decision in the next few days about going ahead with hospice.

Yesterday was Samantha's 10th birthday celebration at her Uncle Scott's (Glenn's brother) house. We drove over, gave her the birthday presents, and had some cake. It was his first outing in a few days, and - he did well, I thought - just so darn out of breathe, from walking. Friday Sam had a party with her friends, and - today is REALLY her birthday. We can't believe that she IS 10 -where does the time go??? Anyway, the picture is from that celebration. The other little girl is Sammy's Friend - Marguerite.

That lily I showed on the blog is still blooming - a symbol of hope to us. The weather has been very nice, and I have done some gardening. Won't be long now and the cold will set in. We had to bring in the outdoor plants already - I put them out on the patio all summer. I picked the last of my container garden vegetables - tomatoes, green peppers, green onions, and herbs. I also harvested an ear of corn off that stalk that grew in our front lawn! Put it in some homemade vegetable soup - delicious. People have been gifting us with food - fresh blueberries, freshly made halupki from St. Michael's (yummy), beef stew (also yummy), etc. Irene is up at Green Brothers picking apples - she will bring us some later. Doesn't this just make you hungry?

The letters to Oprah are going out this week, I believe. I think she has 24 of them - trying for 30. I am so anxious to know how this will go, and so hopeful that we can bring attention to the problem.

Once you choose hope, anything's possible. Christopher Reeves

2008-09-18T13:48:00.020-04:00

we drove home Tuesday - we made Butch comfortable - put the seat back, got pillows and a blanket, put on a little Johnny Cash 1st, then a Roy Rogers tribute cd, and he took a pain pill. The trip went by fast - 7 1/2 hours, and if he was a bit confused - well - so am I most of the time now! When we went to to our small groups meetings at our church, people used to pray, asking for "travelling mercies" - I thought that was a strange phrase. Now I know EXACTLY what that means, and we received them.

Yesterday we went to Dr. Gehring. We asked him to recommend a palliative care Doctor, as Dr. Gamblin said we should have one - someone to oversee Butch's care from now on. Dr. Gehring said he is the palliative care Doctor from Endwell Family Physicians. Since Butch thinks a lot of Dr. Gehring, who is a great Doctor, and a good Christian man who listens to the "Great Physician", as he calls him, we thought that was SUCH a blessing. He said that from now on, he would be coming to our house to take care of Butch, saving him the trip into town, He also had his office contact Lourdes Hospice for us. As Butch is unable to take chemo at this time, this is the best thing we can do to ensure that he receive all the help that he needs at this time in his life. This does NOT mean that he has given up. If he gets stronger, he can reconsider his options. In the meantime, we are in God's hands. As Butch says - there is nothing different - God was ALWAYS in charge anyway.

Today, Lourdes Hospice called, and it was Laurie Vandermark, from New Life! I think I remember her telling me once that this is what she does, but I had forgot. Another blessing! We talked for awhile, as she explained the services hospice can offer us, and we set up an appointment for Monday morning. She said they love Dr. Gehring also.As for Butch's health - he has been unable to even stand up w/o having breathing problems, Dr. Gehring said that is because of fluid on the lungs, and put him on lasix - that should help, although Butch is not fond of lasix. He has been walking with the aid of the walker outside the house - without while home. He is very, very weak, but hopefully the 2 week course of 2 different antibiotics that he is in will help with that. They never did isolate what caused that infection, however, we think it was from that jp pouch and the drain from the bile duct. He is eating a bit, but needs to eat more to gain strength. He still has his sense of humor, though. Dr. Gehring told him he could eat and drink what he likes now, and - when we left the Doctor;s office, he informed me that Dr. Gehring saying that to us is the GOOD thing that has come out of this - I can’t tell him to eat and drink stuff that he doesn’t want any more!

Where there's life, there's hope. - Theocritus (c.270 BC)

2008-09-14T10:48:00.009-04:00

I apologize to all of you for not writing sooner - I have some very bad news. The cancer has returned, and it has spread. I needed a couple of days to be able to handle telling all of you, as this has been a mighty blow to us, and, also, Butch has been very ill, fighting an infection. We arrived Tuesday night, for our Wednesday post surgery appointment. At that appointment, his blood work seemed OK - white count normal, liver and kidney readings in pretty good shape. BUT, before we left - starting on Sunday, I noticed a bad odor coming from the area where the wound vac, and the j-pouch was. I asked the home health nurse about it, and she said she didn't think it was infected, but the odor got worse. I kept an eye on his temperature, and it went up a couple of times, but for the most part stayed around 98.1 (normal for Butch). The liver doctor who we saw in town refused to see us to check on the j-pouch (what we hired him on for, and discussed in great detail - would he attend to aftercare!), so we came to Pittsburgh. He got noticeably weaker by Wednesday, confused and hallucinating a bit. When I called, Dr. Gamblin scheduled him for a CT scan and blood work before his appointment. At the appointment, He thought the wound looked good, and took him off the wound vac. The blood work came back normal at that time, as I mentioned earlier. He cleaned out the j-pouch, and scheduled him for a procedure to aspirate a pocket of fluid he saw in the abdomen near the j-pouch, but not being drained by it. He said it was their intention to put a permanent catheter in Butch, in addition to the j-pouch. It turns out that when they drained the area, it was small, and they got it all, so they didn't need the catheter (Thank the Lord). He thought maybe the confusion, odor, etc. was caused by an infection, even though the blood work didn't show it at that time. In addition, he told us (on Wednesday) that the scan showed 3 "shadows" on the portion of the liver that remained after the resection. He showed us the scan, and the liver which has rejuvenated nicely, but those shadows were there. he said that the radiologist's report would be back Thursday and we would discuss it then. When the procedure was done - on Friday - that Doctor found some ascites (fluid in the abdomen), and his white count was up (means an infection) and he is on a course of antibiotics - one of those "broad-spectrum" types (ampicillan) - by IV drip, and has been admitted to the hospital (the procedure that he had Friday was as an outpatient) since Friday. They have run many tests, and this morning his blood work is back to normal. Dr. Gamblin wants to keep him another day, then they will give me a prescription for pills to continue the antibiotic at home, and we will return to Endicott. I am not sure which day - tomorrow or Tuesday. I need to evaluate the situation tomorrow. As for the scan, the Doctor said the cancer has spread beyond the liver to many places.

In spite of all the bad news, we have not given up hope. Butch was scheduled to begin chemo on Friday, and that will not be possible - he is too weak. So, we will have to talk to our Doctor's there, and they will consult with the Pittsburgh Doctors, to develop a plan for Butch's future treatment. He is not in a lot of pain, and is resting comfortable right now. He has lost so much weight, the Doctor discussed TNP (Total Perinatal (??) Nutrition) with us - a feeding tube, but - Butch said no. For the moment, my goal is to get him home safely, to Endicott, Beyond that, we can decide once we are home, and he has a chance to regroup. I would ask all of you to pray for Butch. My prayer is that God perform a miracle for his faithful servant. If that is not God's will, however, for whatever reasons we humans cannot fathom, I pray that he protect him from further suffering.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.- D Carnegie

2008-09-03T21:44:00.003-04:00

The picture of Butch that you see is from this afternoon - that is the wound vac attached to him. As you can see, he is skinny, but looking better - Irene said today that she thought his face was filling out a bit - he is certainly more alert. He is watching the Republican Convention right now. We walked up in back today - behind the houses - quite a distance (maybe 5 houses down and back). I thought that was good progress. The eating has continued to be better, although not great - maybe he just doesn't like my cooking! Tomorrow is a busy day - I have a Doctor appointment (for me), a dentist appointment (for me) , the oncologist at 3:15, then up to work to talk to my boss about my returning to work.

I will probably go to writing only 1 or 2 times a week unless some big news occurs. Not enough is happening on a daily basis to write about (thankfully so). Butch continues to recuperate, slowly, and I hope to have a good report when I write on a weekly basis.

“Life shrinks or expands in proportion to one’s courage.” — Anais Nin

2008-09-02T22:02:00.004-04:00

We have had some bad news today. The CA 19-9 number is quite high - it is 6,500. It went from 2,500 to 3,100 and now 6,500. That is a cause for worry. Butch has an appointment on Thursday afternoon with the oncologist, and we will be discussing this with him. It will be necessary for Butch to start that chemo as soon as possible, however, he cannot start it when he is as weak as he has been, so I am not sure how we will proceed. Also, when he weighed himself last night, he weighed 141 pounds - 4 more pounds lost in a couple of days. This also is not good. He did say that he felt a bit stronger this morning, and he did walk around the yard a couple of times today. He really tried to eat more today, also and I put one of those benecals in his oatmeal this morning - that is an extra 340 calories.

I put a link on here for a political cartoon that a friend sent us - it is really funny, and makes fun of all the candidates and politicians - doesn't single any one in particular - Butch said it is true, also!

Anyone can hold the helm when the sea is calm. - Publilius Syrus (c.42 B.C.)

2008-09-01T19:01:00.004-04:00

Happy Labor Day, everybody. It was another glorious day, and I got my swimming in. The pool was lovely - crystal clear, and the day was beautiful - mid 80's with no humidity, and Dad - bless him - heated the pool for us - it was warmer than the air when we got out - just wonderful. The picnic was great - everything tasted good - Dad was the chef dujour, and we all contributed a dish. No pictures, though - camera batteries took that moment to run low, and I had to come home and charge them. Butch held up well - and, when we came home, he rested in the recliner on the patio for awhile then took a walk around the yard - by himself, without my bugging him to do it! I am so happy at that sign of progress.

When we were young, we went to the Greene Fair every Labor Day. The whole Family went for many years - From Grandma & Grandpa down to the Aunts, Uncles, & Cousins! We continued to go until the last few years - I think we took Alex when she was just a baby. It was always fun - we would usually stop in to the Corner Restaurant - it is another name now, I believe, then go to the midway (well - a pretty small midway!), then sitting on a blanket watching the fireworks -Doesn't everyone love fireworks? When my Grandparents were alive, we would have a big family picnic, followed by the trek to Greene, and then - school the next day. In those days, school started the very next day - now the kids get a break, I believe. Thinking back, that was a lot of fun. I miss that - I think we will go to the Greene Fair next year - how about it ?

Well - off to make a Dragon Slayer. Oh yes - I thought his voice sounded much stronger this morning - it has been so weak, and I want to hear it the way I am accustomed to hearing it. Hopefully it will get stronger each day. The theory we are working on - 5 or 6 small meals instead of 3 big ones - seems to be working. He can drink his Dragon Slayer while he watches the Rifleman (remember Chuck Connors?) - I can hear it in the other room. It is one of his favorites - watches one almost every day.

A weed is no more than a flower in disguise. - James Russell Lowell (1819-1891)

2008-08-31T19:12:00.002-04:00

We were unable to go to church today. Our church is an old school and the sanctuary is on the 2nd floor. There is no elevator. There is a chair lift, but he absolutely refuses to even consider taking it, and he can't walk that many stairs yet - so - we decided to try for next week. We have really missed not going to church, and look forward to seeing our church friends again, too. I did tackle the weeds today, and got rid of most of them. I left the corn there, however - it is kind of interesting to have that one corn plant in the middle of my flower garden! It was a beautiful day - probably about 80 degrees, with a breeze. I wish we could have about 3 more months of weather just like this. Then we went to the Blue Dolphin for lunch, and went to k-mart to buy butch new pajamas - his old ones are too big - he waited in the car while I went in. Last, we drove to the Carvel's on Riverside Drive so that he could have an old fashioned strawberry milkshake - nobody makes them the way he likes them anymore - we tried Pat Mitchell's the other day, and he said "thumbs down"! He liked the one from Carvel's, but - I ordered the milkshake for him and a small cherry vanilla cone for me - $6.70!! That is amazing to me. Coming home, we saw a flock of geese - heading south in that old, familiar pattern - it kind of shocked me - we sort of missed summer and are skipping right to fall!

Tomorrow we are having a Labor Day picnic at Mom & Dad's. I am looking forward to a swim in the pool - I have only gone swimming a couple of times this summer. Butch can rest in the shade in the recliner and watch us swim. I am going to make ham and scalloped potatoes in a few minutes to take over there tomorrow.

Life is Life - fight for it

2008-08-30T08:54:00.009-04:00

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

By Mother Teresa

I think the above is a wonderful philosophy - we should all live by it. One thing this whole journey has taught me is that the above writing is oh, so true, and we will try to live each day from now on remembering it.

I have been reading our AARP magazine for this month. Ithaca, NY(Alan's town) is listed as # 1 - top towns - for greenest commuters (percentage of people who walk or bike) That is something, if you consider all those hills in Ithaca! Also - top towns - for skinniest (lowest average BMI) - 4th - Melbourne, Florida (Tom Clegg's home now) and 8th place - Sarasota, Bradenton, Venice (Mom & Dad).

I got my hair cut today - it needed it badly - it grew so fast in the last two months. I stopped on the way home and picked up bacon - to make BLT's tonight - that is the choice that Butch made for supper using those home grown tomatoes I told you about, and he specifically asked for iceberg lettuce. We have an ongoing disagreement about iceberg lettuce - it has NO nutritional value, and I don't think it tastes nearly as good a loose leaf lettuce, but - it is what he likes, so - I guess if he eats it - iceberg lettuce it is. I am going to make corn chowder, also - have some fresh corn left over from yesterday - we had corn on the cob.

When we were at the Doctor yesterday, Butch weighed in at 149 pounds. That is the scale he weighed 166 pounds on when we left. I don't know which scale is correct - UPMC scale said 160, Select Specialty said 160, ours here at home said 155! As of today , on ours, today - he weighs 145 pounds. He is bony, no meat - it is a fight to get him to eat. We will have to fatten him up. Sharan sent us some stuff today that is a calorie booster - benecal, for one thing - it is a powder (supposedly tasteless) that you add to any drink - add 350 calories! Also drinks called "arginaid extra" - for wounds - it says "arginine-intensive drink with specialized nutrients to provide support during wound healing" - 250 calories (wildberry flavor), and another cherry flavored drink mix that is "arginine-intensive". Arginine is an amino acid that - among other things - improves immune function and helps with the healing of wounds. In fact, the book that we follow very closely - "Beating Cancer with Nutrition" - states that formulas that combine arginine with fish oils and RNA not only accomplish these two goals, but in addition is thought to reduce tumor Burden. It sounds wonderful - We'll see if he can tolerate it. Thanks so much, Sharan, for sending that and - as important - for being a cheer leader throughout this entire saga.

Butch and I are incredibly blessed in that our family's - both sides - are just filled with exceptionally strong, loving people who have been our support system throughout this journey, and the search for a solution. Sharan, my Brother Alan, and I grew up together way back in the 50's, in a big two family house on Conklin Rd. that was filled with family - Parents, Grandparents , Uncles, etc. We lived through a large part of our childhood together, and have remained very, very close to this day. We have been through a lot together, and have been fortunate to have this close relationship to lean on when life gets tough - as it very often does, unfortunately. We have this "collective memory" that no one else shares with us, as do siblings all over the world, I suppose, and, although our lives have gone in very different paths, we have always had each other. Butch's Sister Carolyn brought over a poem that she wrote for Butch the other day, and it brings tears to my eyes when I read it. It is all about THEIR childhood and growing up together - there were 5 brothers and Sisters, but Carolyn and Butch are much younger than the other 3, so they grew up together. They had that same kind of close relationship that I am talking about. All this, and our wonderful friends - our "extended family" have meant so much to us at this time in our lives.

Speaking of childhoods, I had some sad news this morning. Mom called and told me that Uncle Norm passed away last night. Norm Blewett, that is. Aunt Rick and Uncle Norm are Mom's oldest friends - Mom and Aunt Rick have been friends since grammar school, and Mom dated Uncle Norm 1st! They are wonderful people, and have always been such a comforting presence in our lives. They had 6 children and live out in Windsor. We spent a lot of time together over the years we were all growing up, and I loved my Uncle Norm - just as I love Aunt "Rick" (her maiden name was Rickerson, and the nickname stuck! He was a truck driver prior to retirement, and I remember almost whatever we were ever doing when we were together - Uncle Norm was sleeping in the chair! Uncle Norm was 80 years old, and has been ill for the last few years, and he is now in a place where there is no illness. Although we will miss him on this earth, we will all surely see him again when we get to heaven ourselves.

Take heed: you do not find what you do not seek - old English Proverb

2008-08-29T20:29:00.004-04:00

We went to see Dr. Gehring today - Butch's primary care physician. He is a great guy, very smart and knowledgeable, and he believes in good nutrition, supplements, and homeopathic medicine, all things which endear him to me. He is a young fellow - late 30's probably, and that (I believe) makes him more open to things outside of traditional medicine. Anyway, when we asked, he had them do a blood test to get the Ca 19-9 number - will get the results in a couple of days (probably Tuesday). He also took him off the digoxin - said his heart rate was fine, but left him on the metoprolol (lopressor), which is a beta blocker and he said it is good protection - the same reason he needs to stay on the coumadin (cancers that involve the liver raise the risk of blood clots, as we know). Butch will keep taking the pain medication as needed - mostly at night only now, but he went off the anti-depressant - says he doesn't need it. I went to Vitamin World today, and bought a really good multi vitamin for him - potent and, supposedly - good. Also, I have begun making him those "Dragon Slayer" shakes again - tonight's was raspberry. I tasted it - it was pretty good, even though it has a lot of stuff he doesn't like - protein powder, flax seeds, bee pollen, and wheat germ. I mask the taste with the berry ingredients, and it's not bad - if I do say so myself!

Home Health came today and re-set up the wound vac. It started beeping at 2:00 this morning, and I couldn't get it going again - usually I can, but the dressing had to be changed - it got an air pocket in there, and messed everything up. I put a manual dressing on until she got here, and told her I want to be off-duty at 2:00 in the morning!

Melanie and her family came for dinner last night - she made ziti that was just delicious, and brought it with her. It was great to see them all - the girls were very anxious to see Grandpa and I. Butch is eating better since he is home - not great, but - better. Caroline was also over to see him, and to bring us the rest of our mail - TONS of it, for goodness sake. She made a loaf of blueberry banana bread, and Butch has asked for a piece a few times - high praise, right now! Alan drove down from Ithaca and brought us an orchid plant - it is beautiful, with a big purple orchid in full bloom.

We called Pittsburg to find out what time the appointment was next week, and she said Dr. Gamblin would not be there that day - one of his associates would cover. I said that would not work for us - we are NOT driving all the way back to Pittsburgh to get a Doctor that has not been involved in this case. We worked it out that we will be going on the 10th of September - we will probably go down the day before and stay over, coming back after the appointment (I think it is at 12:30).

The j-tube has not been filling up as much, and I believe that is good - perhaps they will be able to take it out in the near future - we will see. The wound vac is not collecting much either, so - maybe that can go also. All to be decided in the future.

Next week we will be calling the oncologist and setting up an appointment to go see him. We don't know yet when he will begin chemo, but Dr. Gehring thinks we should at least talk to him (the oncologist) about it.

The Flowers are beautiful

2008-08-27T09:27:00.006-04:00

Give fools their gold, and knaves their power; Let fortune's bubbles rise and fall; Who sows a field, or trains a flower, Or plants a tree, is more than all. -John Greenleaf Whittier, A Song of Harvest

Everything looks beautiful here - Zinnia's, Asters, Black-Eyed Susan's, Gay Feathers, marigolds, many others (Weeds too) - all in full glory. After I chauffeur Butch to the barber (yes - he still goes to his barber of 30 years - Frank), I will go to the produce stand over by the Blue Dolphin, and shop for groceries. Then - the weeding begins! BIG project, but - I am up to it. We have many tomatoes in the refrigerator. Irene picked them and put them there as they ripened - also have some green peppers to pick, and I saw one puny cuke (I garden in a barrel out front - gone are the huge vegetable gardens of yore). A funny thing - a bird must have carried a corn seed, and it is growing - one corn plant - in the middle of my flower garden out front. Glenn came yesterday and mowed the lawn, so that is all done - he (and Irene, much to our chagrin) kept it in shape for us while we were gone.

We feel like George Bailey in "It's a Wonderful Life" - hugging trees, seeing everything through new eyes, just enjoying the wonders of everyday life we ordinarily take for granted. I had a good time just watering everything this morning, and checking it out - 5 1/2 weeks inside a hospital does wonders for your perspective.

Flash is sticking pretty close to Butch - doesn't quite trust us not to disappear again - he also demanded extra treats.

We are so grateful for God's continued grace in our lives, and look forward to his leading us thru the coming months and years.

Home, Home on the Range - Old Cowboy song

2008-08-26T21:58:00.004-04:00

We changed our mind and came up the middle of the state - hit TERRIBLE construction - they are building an interstate 99, which they badly need - BUT - left at 10 - got here (actually - at the Blue Dolphin) at 6:00 - long, long trip. Butch made it fine - home health has been here and checked him out - I changed the bandages while she observed me (I think I passed!), I had already changed them last night and this morning. Tomorrow morning they will hook up the wound vac and we are in business - they take over. She will also do INR - to check coumadin dosages (oh yes - back to that - while on the lovenox, it wasn't necessary). She gave me a number to call - 24 hours a day, if necessary, and I will be glad to have that as a back up plan - things change fast for us the last few months, and it is kind of a security blanket for me.

Tomorrow, Butch will get a haircut, get hooked up, and we will call the doctor. I am confused - they (the attending physician) gave us a prescription (along with 10 others) for digoxin - that is the heart medication, and - I don't know why! I will find out though.

Flash is happy we are home - acted kind of stand-offish at first - I guess he was mad at us - he got over it though. He has sat with Butch all night - stayed away from his stomach, too! What a good dog he is - we really missed him a lot.

Dinner went well - everyone said they loved the goulash, and I felt real good about the whole thing . I am going to bed now - ready to collapse in a heap, I think.

There's noplace like home, noplace like home, noplace like home (Dorothy, in the Wizard of Oz)

2008-08-25T16:59:00.003-04:00

Give me those red slippers - we are coming home tomorrow. Butch is upstairs sleeping in our room at Family House - he says it is like heaven! I have made goulash for dinner - with the help of my "Sous chefs". We will be having goulash, a green salad, rolls, watermelon, and chocolate cake. Made two HUGE pots full - there better be enough! I got up this morning, and drove to Giant Eagle to buy the groceries - got my parking place back, too! We left the hospital about 12:00 and called a taxi - Butch is walking with the walker, but - he doesn't really need it - it is a security blanket for now. We are so happy - BEAUTIFUL day - with a breeze - seems like a perfect early fall day - the leaves are starting to turn also.

Alexandria went to orientation for the high school today - oh my, oh my!

We are coming home a diferent way - up 79 to Erie, and across on 17 - little bit different for us.

When next I write - we will be home.

Home is a place you grow up wanting to leave, and grow old wanting to get back to. - John Ed Pearce

2008-08-24T12:08:00.005-04:00

Well - our plans are in place, and barring any unforeseen mishaps - Butch leaves the hospital at noon tomorrow. We will take a taxi to Family House, where I will cook for everyone tomorrow night (I think halupki - lots of people will help me, I hope). Then - IF Butch is feeling well enough, we will leave Tuesday morning and I will drive us home. We have the portable wound vac - still in the box - and we will have it hooked up by home health when we get home. (they decided he couldn't take it off quite yet - wound is still draining in that one corner I told you about). In the meantime, they will pack it for us and I will change the dry dressing on Tuesday - that is pretty easy, and I can handle it. He can't use the portable on the way home, as it only has a one hour charge if not plugged in, and we can't recharge it fast enough while on the road. They said this is common - it will be fine until we get home. Dr. Gamblin said it is fine to come home and return for the clinic appointment (on Wednesday, the 5th).

Numbers are still all good, and therapy says he is in good shape. He still gets out of breath from any activity, but I guess that is normal - it is improving. He can get the spirometer up past 1250, and that is acceptable. In a few minutes, we will go outside - I must tell you, after I left last night, he read a book. He brought along Don Rickles book, which came out in paperback before we left, and he said it was pretty good. I think that is a VERY Good sign - he is coming back to the land of the living.

I am very excited. All of us on cholangiocarcinoma.org are composing letters describing our journeys with this horrible cancer. We are to complete them by September 15th, and are going to try to get Oprah to do a segment on it. We would like to raise awareness, and increase funding toward facilitating a cure. One of the women on cc.org wrote a poem last week, called "wish I had breast cancer", a kind of tongue-in-cheek look at all the things that are wrong with having this rare cancer. And, of course - most funding goes to the cancers that affects much larger groups of people, so we would like to make the public aware of us.

Happiness is a choice that requires effort at times. - Anom.

2008-08-23T09:31:00.006-04:00

We received a 2nd packet from Carolyn yesterday - we had her mail us our bills! We were here so long we had to pay them from here! We had our mail held, thinking we would be home in time to pay them - but - you know what happened! We pay on line, so - we should have had it forwarded from the 1st - we just didn't this was going to take this long.

Butch is sleeping in this morning - while the IV drips away. That could be a soap opera name, couldn't it - "as the IV drips" - instead of "as the world turns" - catchy, don't you think?

Did I ever tell you about Marty? He is a quite a character - 74 years old, married 53 years, owns a home remodeling business near Dushore, Penna. He is also a self-described "evangelist Minister" - he is a real prayer warrior! He prays for people on the bus, prays for people in the hospital, prays for all the folks at the house, etc. His wife got sick in March - gall bladder, and they brought her here. They found cancer when they opened her up to take her gall bladder, and many complications ensued. This is the 6th time this lady has fought cancer, but she was so weakened by all the complications that ensued that she had to go to a nursing home back where they come from, instead of home - a temporary situation, they were told. They didn't take care of her properly, and she contacting MRSA. That caused problems with her heart and her kidneys. They shipped her back here last month, and - she is on a ventilator and dialysis. Marty lives at the house and comes to the hospital every day. The Doctor was pushing him to turn off the ventilator, and he is resisting - he says God will take her when he is ready - he is not going to be the one to do it. Yesterday He fired that Doctor and got a different one, who is going to try a couple of different things. I ask you all to say a prayer for Marty and his wife - these are difficult gut-wrenching decisions that people are forced to deal with - they are amazing, both in the love they share with their life partners, and the love they have for the Lord.

I realize now how fortunate we were that Butch was able to come out of that last infection in as good shape as he has. We got a letter from the medical director of UPMC this week - informing us of the infection that Butch acquired while a patient at the Presbyterian campus of UPMC. On July 31, 2008, your wound was noted to be positive for an infection with Klebsiella pneumoniae ". Incidentally, this is one of the infections listed on the information sheet in the bathrooms that you must wash your hands to avoid giving/getting. It did cause the cardiac problems that he was experiencing, however his heart seems to be OK now. We also think the lungs are clear now, and the only thing left to lick (from the infection) is the weakness - but - we need to remember - he was weak coming in - from the chemotherapy.

We all live with the objective of being happy; our lives are all different and yet the same. - Anne Frank

2008-08-22T14:03:00.009-04:00

The Doctor from Dr. Gamblin's team came in this morning and cleaned and redressed the wound. He pulled out some of the "gunk" that is still there - only a little - and said it is doing very well, but they would like to see that corner - the one with the "gunk" - all pretty and pink like the rest of the wound. It is not nearly as deep as it was, and it is healing, but he wants to leave the wound vac on through Monday morning to see if they can't heal it enough to pull the vac before we leave - 12:00 on Monday they tell me. So - no Sunday discharge, probably, although Dr. Gamblin is going to stop in - he answered my e-mail, and I will ask him about the appointment. I don't think I can get this changed - they only have clinic on Monday's, and this Monday he is JUST being discharged, next Monday is Labor day - so - the 5th it probably is. That is Ok. however, it is in sight! The Doctor this morning told me I am an honorary member of their team! The other Doctor - the attending physician - told me the other day that he would not like to be the guy that was trying to "bs" me - "he is in for trouble", he said - high compliments, I think. No danger I will be going into medicine, however - necessity makes a strange bedfellow (or something like that).

It is HOT - high 80's, and it feels funny after all that nice, cooler weather. I walked down to that IGA I told you about (there are 21 steps to get to 2nd floor - elevator was all tied up), and the sun was beating down on me on the way there. I buy Butch's Fusion there. Later today we are going to try to find a scale to weigh him again - we would like to know what he weighs now, before discharge.

Since I have been at Family House, many people have come and gone - returned home, I mean. Quite a few people have passed on, also (6, I think). There have also been some happy news - people got their long awaited transplants (Not Susan , unfortunately), and some have returned to Family House after being released - for transplants, VERY serious operations, etc. I have learned quite a bit about many very rare diseases, as this is one of the places people come when they have one of those rare diseases, and seen a side of life that most of us never see. Joy - The lady who heads up the cooking crew most of the time (seeking out cooks, cooking and cleanup crews, shopping crews, etc., has the time because her son is waiting for a transplant. They got called to the hospital in the middle of the night this week - the organ was bad, but - that means he is close - Thank the Lord for that.

Butch has completed his therapies for the day, and his IV's (until the 11:00 PM one). Ankles are still a little swollen, but - not much. We are going outside now to enjoy the birds - we will take some bread to feed them. I must remember to ask the Doctor about coumadin for when he gets out of here - I would assume they would know, but - I've learned NEVER to assume!

Seek advise but use your own common sense - Yiddish saying

2008-08-21T13:45:00.007-04:00

As you can see from the picture, Occupational Therapy showed up late yesterday. She was also here this morning - Butch graduated from a 1.5 lb. weight to a 2 lb weight - unfortunately, both PT people called in today, but - we did it ourselves - walked quite a bit as a matter of fact. I don't know what has happened (I usually don't!) but - when I got here, the nurse had the IV 3/4 done - so I wouldn't be mad at her, she said! yesterday it was "hospital policy" not to hang it earlier - HAD to wait until 9:00 and take forever! The Liver Doctors were in and said they think we can be discharged w/o the wound vac - they are coming back tomorrow for the "changing of the dressing" to make sure. I e-mailed Dr. Gamblin - if we are leaving with no wound vac, why can't we leave Sunday, instead of Monday (remember - last IV at 11:00 PM Saturday night. Also asked for an appointment earlier than the 5th, if possible - we would like to go to Family House for a week, go to the appointment, and COME HOME if possible. We will find out soon, I hope. Mom and Dad have offered to come down and have Butch ride with Dad, and Mom with me - their car is much bigger and more comfortable than ours, and he could even lay down in the back seat if necessary. I don't know if that is needed - we will have to see how he does in the next few days.

We talked to Butch's Brother Tom yesterday - he is in Melbourne, Florida in the path of Tropical storm Fay. He said he is stranded in his trailer until the waters recede, but is OK - he has food, etc. He lives in a trailer park alongside Indian River, with the Ocean on the other side of that, so - this has happened to him before! Good luck with that cat scan Tom - we'll be calling soon.

Mom and Dad went to the Adirondacks today with the Conklin seniors - sounds like a fun trip - ride up on the bus, great lunch, train ride through the countryside. Dad has surgery on the 1st knee on October 13 . He is able to have the surgery after all, which is great - micro surgery, as I understand it, and the poor guy will be able to walk again - he has been in a lot of pain for a long time. We're happy you are going to get the surgery, Dad.

I asked the attending physician to run the other tumor marker test - the CEA - for us, and they took the blood this morning. We discussed that cat scan and told him we didn't want the test - he agreed, but said if any of these tests results go against us, he would have to do it anyway - we agreed, but said we would rather wait. The CA 19-9 came back at 3,100. We must have looked unhappy, because he told us not to panic - said to remember that he said there is approximately a 20 % error ratio either way, so we don't really know if it is trending up yet. It does, however, confirm our suspicion that we had better get back and begin chemo as soon as he is able to. I expect that we will be discussing this at length with Dr. Gamblin when we see him after discharge. I wish SO MUCH that we knew what it was before the CC was diagnosed - it would be so helpful.

Wounds 101 - I did change the dressing yesterday - on the j-tube, and the wound - under the watchful eye of the wound care nurse. I am quite proud of myself, but - hope Sharan is right - I will be glad to leave dressing changes and wound cleaning to the Home Health nurses - this is just "in case" - sort of an insurance policy, they said. I have learned many new skills over these last weeks which I sincerely hope I will never use in the future!

Remember yesterday, dream about tomorrow, but live today - courtesy of Sharan

2008-08-20T14:26:00.008-04:00

We spoke to Dr. Gamblin yesterday, and told him we were APPALLED at being told Butch must stay here until the 1st of September. He agreed, and told the case manager that we need to move on - get back to Binghamton and see the oncologist about restarting chemo, for one thing. She came to our room late yesterday and informed us - rather snippily - that we should be going home Monday, against her advise (I think she said better judgement). The antibiotics are ordered through the 23rd (Saturday), and she said going to Family House on Sunday is not good, as Home Health can't start until Monday, and we will need them. I guess we can't argue that point, so - Monday to Family House. We don't have a follow up appointment until September 5 with Dr. Gamlin - BUT - the case manager made that appointment with his nurse - think I will call myself and explain we would like to be moved up if we can - they might not, because he told us from the beginning that the follow-up appointment is two weeks after discharge. We will probably stay at Family House until that appointment, and then blow this burg!!!

They will teach me how to change the dressing for the wound - starting today, I will be changing it, under their tutelage (at least, that is what they said yesterday). That way - if Home Health doesn't get there for some reason, I can do it. This morning, they said they would hire me - I am a quick learner! The case manager says she needs to get a small, portable unit to go home, and she MIGHT not be able to get that by Monday - she is just determined not to discharge us - they must need Medicare money REAL bad here! They also mentioned this morning that we might need to stay another day because I need more training - imagine!!

Also this morning, they came in and started to give Butch an IV - to put contrast through his system for a cat scan that the attending physician ordered - to be sure all infection is gone from the wound/surgery site. Butch was also to drink a bunch of that contrast. Well - in the past , they have given him half doses of that contrast, and avoided testing as much as possible when contrast was involved, as it is VERY bad for his kidneys, and we know the trouble he has had with his kidney's. We insisted on speaking to the Doctor about this, and they have put it off until we do - he will be in later today. I would like to hear what he has to say about the kidney problem - just because the functions are good right now doesn't mean we should put pressure on them , I should think. And, in addition to the kidney problem, we asked why they couldn't put that thru the pick line, and they said they can't - have to insert an IV, N0w, we got that pic line on their advise - they said they were afraid his veins were going to collapse. I hate to sound suspicious, but - if a vein collapses, or the kidneys act up - that means more time in the hospital, doesn't it? Isn't that what they want and we don't want? I leave it to all of you - I know what I think.

I am also having a hard time getting therapy in here - the nurses have him on IV drips almost all the day today - and I can't for the life of me figure out why they have slowed that IV down to almost a stop. I swear they are plotting against me. I went down to the therapy department between IV's, and asked her to come to the room and help walk Butch up and down stairs - he did 8 stairs! She told them to hold off on the IV until we were done, and told us she would be back VERY early tomorrow to get it in before they start. Then we talked the nurse into holding off until we went outside for awhile - this is no rehab unit, I will tell you - rehab is last on their list. Most of their patients are too sick to get out of bed, so that works out for them! But I am determined that he get as much rehab as we can push them into - it will make it easier for him next week. We have not not seen the occupational therapist, except for her to introduce herself, since we got here - but - no problem - we have done well for ourselves - just putting those sneakers on and off has kept him moving!

What good is running when you are on the wrong road? Old German saying

2008-08-19T10:50:00.005-04:00

Therapy is working with us, and they agree Butch is strong enough to leave - is up (for meals, walks, etc.) 6 hours a day - the requirement is - up 4 to 6 a day - in order to be discharged to go home with 24 hour a day assistance. Antibiotics will be finished at the end of the week - Friday, I believe. We have met all other functional goals, I believe - however, the case manager wants him to stay until the 1st - she gave me some crap about Medicare wanting him to stay until then, and I think she said something about we might have to pay if we don't stay that long (she kind of mumbled it, and I gave her a hard look!). She claims that - because of the wound vac - we can't leave before that, but we were told before that we can get a small portable one and be gone from here when everything else is ready. I will be speaking to the Doctor today - remember he said 5 or 6 days originally? She says the wound is healing and the wound vac could come off next week and we could leave w/o having to worry about it - but that doesn't explain the remaining time until the 1st. Then we need to stay here - at Family House - until the appointment with Dr. Gamblin - I HOPE a week. I don't mind staying if it is necessary for Butch's recovery, BUT - I don't want to stay so that Select Specialty can maximize their Medicare reimbursement! Men - ready your weapons!

We are getting a walker today - we don't need the wheelchair anymore - yesterday, Butch pushed it to the elevator and down to the solarium, carrying the wound vac in it!

We need to ask the Doctor if the glucose readings - which have been going higher and higher - are permanent or not. They told us the shots were temporary, but the numbers keep climbing - we will find out. His lab work shows he is still anemic, although better than he was. The electrolytes are better now - fluctuating slightly, but no real problems. He is taking zinc to aid with the healing process, and the Doctor wisely ordered him an anti-depressant, which I think is helping. I don't know how he got through this far w/o one - he kept insisting he didn't need it. I attribute my getting through this whole mess to #1 - prayer, #2 - support from family and friends, #3 - good food, and #4 - medication! Anyway, his lab results also indicate a continued problem with the bile ducts (we know he still has the sclerosing cholingitis - it didn't go away, as it was in the bile ducts outside the area that was removed) , and the GI Doctors say he is going to have that j-pouch for a long, long time - we need to know what that means, but I don't think they are sure - months, probably. It is filling up - a 3 mm pouch - twice a day, so - it is draining properly, but - it is a pain in the neck (abdomen, actually). It would have been better if they could have put the stents in, but, as Butch says - it is a small price to pay. Liver and kidney functions are still very good - the Doctors think he is doing very, very well. I told the Doctor that I have always referred to him as "the wellest unwell person I know"! Basically, he agreed - or - agreed that he is getting back to that place.

With a stout heart, a mouse can lift an elephant - Tibetan saying

2008-08-18T12:26:00.005-04:00

I must tell you - the lady who oversaw the lasagna making last night made some of the BEST lasagna I have ever eaten. One of the other women made a from-scratch chocolate cake - it was TO DIE for - as the saying goes. I am gaining back some of that weight I lost, I must say. The night before, it was a Puerto Rican dinner - very spicy, but very good.

The physical therapist had Butch climb some stairs this morning - 4 up and back down. He did well. Then we walked, and she gave him 3 more exercises - marching in place, etc. She will add 2 more tomorrow - he is working away, and doing better every day. The progress is a little too slow for him (and me, I'm afraid), but they say he is doing excellant. He says he feels like he is ready to turn that corner, but - hasn't done it yet. He needs to get rid of that washed out feeling - they assure us this is normal progress - 3 weeks of time for every week spent in bed to get back to normal. Occupational therapy is coming in after lunch, then we will go down to the courtyard and play rummy - big excitement!

They tell me that the temperature is to be in the 80's this week - much warmer. I have missed swimming in Mom and Dad's pool - only got a couple of swims in this year. Maybe when we get back, it will still be swimming season - I hope.

I will try going back to the yogurt today. Until 3 days ago, I was bringing yogurt in every day, but - he really doesn't like it very much, and I haven't for the last couple of days. Interesting that the thrush showed up after I stopped giving him the yogurt, so - we will go back to it today. He says his mouth feels a great deal better already - he IS eating a bit better, also - not as much as I would like, but much better. The milkshakes here at the hospital are not very good - the Doctor told me to go down to Wendy's (about 6 blocks) and bring him a Frosty - I would, but am afraid it will melt before I get it back!

I haven't heard anything more about stopping the wound vac - we will have to ask the Doctor when we see him. Also, I need to find out when the antibiotics are supposed to stop - at least through the IV (they mentioned a while ago that he could take a pill when we leave the hospital). They watch pretty carefully, because there are some pretty serious side effects that can happen with that vancomycin - particularly if you run it through the IV too fast. One of the side effects is called "Red Man" - the person turns beet red! That hasn't happened to him, but - he does get a lot of chills - that is why you see that blanket wrapped around him in the pictures - the antibiotic side effects, plus the weight loss combined and he gets the chills a lot.

His Eye is on he Sparrow, and I know he watches me

2008-08-17T09:42:00.007-04:00

I remember George Beverly Shea singing this wonderful song at Billy Graham revivals through the years. Did you know that a married couple who lived in Elmira, New York were the inspiration for this song? The lyricist was Civilla D. Martin, who wrote this about the song:

"Early in the spring of 1905, my husband and I were sojourning in Elmira, New York. We contracted a deep friendship for a couple by the name of Mr. and Mrs. Doolittle—true saints of God. Mrs. Doolittle had been bedridden for nigh twenty years. Her husband was an incurable cripple who had to propel himself to and from his business in a wheel chair. Despite their afflictions, they lived happy Christian lives, bringing inspiration and comfort to all who knew them. One day while we were visiting with the Doolittles, my husband commented on their bright hopefulness and asked them for the secret of it. Mrs. Doolittle’s reply was simple: "His eye is on the sparrow, and I know He watches me." The beauty of this simple expression of boundless faith gripped the hearts and fired the imagination of Dr. Martin and me. The hymn "His Eye Is on the Sparrow" was the outcome of that experience. "

Mrs. Doolitle was referring to the the words of Jesus - spoken in the book of Matthew (chapters 6 & 10).

The Doctor has determined that Butch has thrush - as a result of all the antibiotics. He is taking some medication to get rid of it, but - it burns when he eats, and may be one of the reasons that he is not eager to eat most of the time. They put a pic line in for him to receive his medications (inside - up through the arm) - it was getting too difficult for them to get a vein for the IV's - we think this will be better - jeez - he has been a human pin cushion for the last few weeks - could get a job in the circus!

It is a very beautiful day here - quite cool this morning, bright sunny day - not a cloud in the sky. We called Irene yesterday, and Butch talked to Flash. Irene said the other day she took him over to our house for a while. He ran into the bedroom and jumped on our bed - his bed, actually. When she told him it was time to go, he was disappointed - thought he was home for good, I guess, and pouted for hours afterwards. Poor Flashy - we have turned his world upside down.

They opened an IGA food store down on Forbes Ave. - yesterday was the grand opening. This is a BIG deal, as there are no markets in downtown Oakland. I went there yesterday - it is on the 2nd floor - you take an elevator up to get there, or - walk the stairs. It was built - for the most part - expecting the Pittsburgh Medical school students who all live around here to use it - not convenient for older folks! Incidentally, school starts the 25th, and the students are returning to town - traffic is horrific - glad I am not driving. They are making lasagna at the house for tonight - I can't wait.

Play the hand you are dealt - Jawahareal Nehru

2008-08-16T10:33:00.005-04:00

I dedicate this wise old saying to Butch - and to all his poker buddies that are reading this! He is playing the hand very, very well - even though he got some really bad cards! When I got here this morning and turned on the TV - the golf channel was on, so - he watched golf last night, and is watching again this morning - a sure sign that he is back and getting ready for some action! It is a gorgeous morning, and as soon as the IV drip is done - we will head outside for awhile. and enjoy the birds in the atrium - and the beautiful day.

Dr. Decroce (the attending physician) came in last night and told us that the CA 19-9 was 2,500. That is very, very good - considering that it was 19,000 before the operation. Remember - it was 20,000 at Sayre in March, 30,000 at Mayo in April, 48,000 when he started Chemo , and 19,000 before we came. Normal is under 37 (that is correct - 37 - not 37,000, not 370, not 3,700) - BUT -we don't know what Butch's normal was before the CC - possibly his was already high, because of the sclerosing cholingitus - as least that is what we hope is the case. They will take it again next week, and then we will have a benchmark to watch. Bilirubin is 2.0 - was 17 right after the operation (normal is under 1). Creatine is .9 - normal is under 1 - that is kidney function - came in to the hospital at 1.4 - hooray!!

Did you see Butch's new New Balance sneaks in the picture? I bought a extra,extra wide size and they JUST fit!

Flash is doing well at Irene's house - misses us, she says, and is her "shadow" - follows her everywhere. He lost a little weight, but - that is a good thing! Irene brings Abby (his best friend) over to her house for a "play date", and they all have a great time. We are so lucky to have Irene to do this for us - I don't think Flash could have gone to a kennel in any case - that would have involved him having to understand that he is not a person - he is a dog - and - I don't think he could have tolerated that. We will all be very happy to see each other again - I just need to worry about Flash not jumping on Butch's stomach - that would be disastrous!

I told Butch that home-made desserts are falling out of the sky at the house -somebody made the apple crisp I told you about two nights ago, the night before that it was brownies and ice cream, last night there was a pineapple upside down cake, and tonight someone is making a from-scratch carrot cake! Dr. Decroce says Butch SHOULD eat some sweets - just eat them in moderation. Sugar is energy, and he needs energy now. With the tumors gone, he can ease up on the dietary restrictions a bit, and he is ready to do that, I can tell you. However - we have learned our lesson - we will try to eat in moderation always.

Don't halloo until you are out of the woods - Benjamin Franklin

2008-08-14T15:45:00.011-04:00

Thursday's events - As you can see from the picture, we were allowed to go out today -small victory, but important. Also - when the menu selection sheet came for tomorrow , it said "lib" - liberal - even better than regular - TONS of selections - so many - he couldn't make up his mind! Everyone has been VERY nice to me today, and we have had a very good day. Butch actually walked from bed to the elevators (probably more than 100 feet), then he got in the wheelchair for the rest of the trip. It was raining outside, so we stayed in the solarium, which was very nice - we had it almost to ourselves. We are working on strength diligently, and, although it is going VERY slow, it IS going - as you can tell. Butch is still very weak - has to sleep after a walk - and it is hard for us to be patient, but it is very important that he not overdue either. They gave him a 1.5 pound arm bar and he uses it in bed to strengthen his arms - does "row, row your boat" forward and back. I need to go to the New Balance store on Forbes tomorrow, as the therapist wants him to walk in his own shoes tomorrow (instead of the hospital socks, or his slippers), and - the pair he brought don't fit because of the swelling. I need to buy a size bigger.

I have developed a way of coping with minor annoyances like nurses not answering the call bell when we want non-medical supplies - pajamas bottoms, extra blankets, hospital gowns, etc. I took Sharan's advice - I simply go up to the carts they are stored in, take the sheet off and take what I want (back on the 10th floor - they didn't even HAVE any pajama pants on the carts)! It works very well - no irritation on our part, he gets what he needs, and - we have not bothered them. That is how I got the wheelchair I keep in our room, and the recliner (I rescued it from down the hall). When we got here, he had only a straight chair in his room. I asked - several times - if we could have one of the comfy recliners I saw out in the hall down across from the lounge. Everyone said yes -BUT -they had to clear it through some mystery person. After 3 hours and 5 people, I simply went down the hall and rolled it into our room. No one has EVER mentioned it since! I keep a cooler next to the bed and keep his drinks, yogurt, fruit, etc. that I bring in cool - when I relied on them - well - it wasn't good! I have 4 Cool packs which I take turns taking back to the house and freezing, so it works out. I also tell everyone that I am blogging, and make sure that they know I am writing about how our days are going ("Oh look - you'll be famous - I am writing about you on my blog") - it works on almost everybody! These are some hints you should keep in mind should you ever find yourselves in a position to need them .

Butch does not a telephone - Specialty Services hospital does not have phones in patient rooms - believe it or not! In answer to some questions - I get my sayings of the day from a variety of sources - one is the web site - "Wise Old Sayings". It gives me something to do to keep my mind in gear and off hospital stuff - looking up appropriate sayings. It is actually fun, and I have learned a bit, too. I don't know how many of you read the comments people leave, but some are very informative, and some are very funny! The reading audience is VERY savvy!!!

Friday AM - Well - home health is set up for Family House - Gentiva Home Health. Butch has walked all the around the unit w/o holding on to the wheelchair - big improvvement. They told me the wound vac can come off - MAYBE -next week, and we should keep him here until that happens. They took the staples out from the "Mercedes" incision on his abdomen, and - things are looking up!

I played pinochole with 3 others ladies at the House last night - two of us who know how taught two ladies who haven't played for years - it was a lot of fun, and - good practice for playing when we get home. The dinner was great last night, and the dessert better - appple crisp, warm from the oven - with vanilla ice cream - can't get much better than that in my book. I hope by the end of next week, I will be cooking for everybody (we all chip in for the cost) - once Butch is out of the hospital I will take my turn. I will make everybody banana bread for an appetizer - and who knows what else? Cooking for 40 people will be a test of my skills - but I will have assistants who will help me. One person plans and oversees the meal - three other assist and clean up. It is a little scary - much easier to just assist - but - they say they need us to take a turn as "master chef" - planning, purchasing, and overseeing the preparation. Many people cook their ethnic specialties, so it is a lot of fun - and - great home cooked food. This is my big chance - all those years of watching the cooking channel should pay off now!

Come what may - time and hour runs through the roughest day - William Shakespeare

2008-08-13T11:45:00.012-04:00

PM of the 13th - The physical therapist came and we walked - all the way down the hall (about 60 feet). Then he rested (we had brought the wheelchair), and he walked back also - wonderful progress. Also, he has been in the recliner all morning. After lunch he will take a nap and then we will do it all again. I must say - it seems better here - they have pajama bottoms - and - the house keeper really CLEANED the floors in here this morning - a welcome change. It is a bit difficult to get the nurses in - patient ratio to nurse is much higher - but - they come eventually. They use UPMC's food service, so - same problems there, but - meals come before they are delivered to UPMC, instead of late all the time - that IS a bonus. Lunch today is toss salad, vegetable soup, chicken and biscuits. Not too bad - soup is delicious (they have a couple of soups that are inedible!).

We walked two more times ourselves this afternoon - he is pooped out now! Enough for one day.

I need to see the dietitian or the attending physician or someone - got the menu for tomorrow - it says NA2GM (nothing with salt over 2 grams) - HORRIBLE choices - salt free beef broth, etc. (he was on a regular diet). Called for someone to explain - different people have told me that 1) the Dr. changed it - 2) NOBODY changed it - it came in that way (it didn't) 3) - I shouldn't bother my pretty little head over it - that was "their business to worry about" and - 4) NA2gm IS a regular diet - I am mistaken! Well - I have asked to speak to the floor Doctor when he comes in, and informed floor personnel that this IS my business , and I take it VERY, VERY seriously. I am asking that NOTHING be changed dealing with his diet w/o talking to him - and ME - first. I doubt the doctor did that, as he told Butch last night that he HAS to eat , and - I should buy him food in the cafeteria to supplement if we don't like the food here - which I AM doing, but - this is ridiculous - if he KNOWS I am going to supplement - why restrict it so seriously that there are no good choices? But - his ankles ARE very, very swollen - so - who knows what is going on. I will find out though. They are trying my patience!

2nd blow-up of the day - they won't let me take him outside! I asked yesterday and they said I needed the attending physician on the floor to sign orders that he could. He didn't come until after 9 last night, so - I wasn't here, BUT - I asked the nurse to be SURE to ask him. She said OK - and - the order wasn't written up. They told me I couldn't take him off the unit again today, and I blew up! I mean - we are going backwards - "is this a prison or a hospital", I asked?. Well, I got to the case manager and expressed my unhappiness, and she - eager to humor me - must be moving the mountain. She just came down and called me out into the hall. "Do either of you smoke?", she asked. I said no and she said she was working on the problem. Well - we don't smoke, but many of the Montefiore patients DO go outside to smoke, and - if I said yes, would we then not be able to go outside? It is a moot point, as we DON'T smoke, but I think you get my point. I also complained to her about the menu situation - and she told me I could meet with THEIR dietitian in the morning , and we could come up with a compromise. Jeez Louise!

I did ask her about the Doctor saying Butch could go home in 6 days and she said yes - 5 or 6 , BUT we might need a few more days here because home is out of state. I mentioned that we could go to Family House for a couple of days, and she said I need to call Tioga County and find out if we can have our pick of Home Health companies, and then she would arrange for continuation of care - a company that services here AND Tioga County. I am not sure why Tioga County has to have anything to do with it - seems to me it is Medicare and Tri-Care we need to worry about, BUT - I will call to humor her. Mellie is checking into the rehab unit at Bridgewater - Methodist Homes is a possibility, also. This is our backup plan which we MUST have in order to spring him - I do not expect to be using it. If I don't have one, they will make a plan for him, and we don't want that to happen! I am becoming desperate to get him out of here, BUT I do need to make sure that he is ready - taking him home too soon wouldn't be smart, although - once we are home, I think he will get better FAST. His color is very good today, and his sense of humor has returned - for the most part. There are many things here that you just can't make into something funny, matter how hard you try!

Our old Doctors came in - from Dr. Gamblin's team -to check the j-tube and wound. I told them they switched wound vacs today - to a smaller, more portable unit. They said maybe this is the one we are coming home with. Everyone has been telling him to eat, eat - and then they gave him a menu where they took all his menu choices away! I don't get it. Anyway, they are satisfied with his progress. The j-tube has stopped draining so much, and the color is better - no tinge of red, so - that is a good thing. They didn't mention the stents - who knows? Maybe he will luck out for once, and not need them.

The rest of the story - I met the Doctor (he came in at 7:30. Nice guy - loves to joke around. He said he would put him back on a regular diet - claims he didn't change it - that it came over that way (no matter that yesterday he was still on a regular diet - oh well!). Also said "no problem" to the going outside - and gave me a copy of the lab work - I have been asking for 3 weeks! He is going to have a CA 19-9 taken tomorrow - that will be great - we can see what it is. Well - mission accomplished! I feel like I have won a war -BUT - I didn't get him outside yet - better not crow too soon - and I haven't seen a menu selection that says "regular" diet on it either - we'll see what happens.

Thursday AM - WHen I got here - the case manager was in here - making sure that Butch ate his breakfast until I got here! She said the dietician is not in today , but we will figure it out. I will know when I see the order form for tomorrow if we still have a problem - I will let you know.

I called Tioga County and they said they are the sole Home Hlth agency for the county - call before we leave Family House - we are back to thinking we will have to stay at Family House for a few days - that OK though - we can do that!.

I will record today's happenings as a draft and publish in the morning - this works out well for me - I don'tforget things this way.

Friends are God's way of taking care of us - unknown

2008-08-13T10:06:00.002-04:00

We are now in the select specialty hospital - 8 South. It is a separate corporation that rents this space from UPMC. it is a sub-acute hospital - since he wasn't ready for rehab yet, and was ready to leave acute care - this is our new home for awhile. When we 1st got here yesterday, the case manager met with me and said he was slated for at least 19 days here, before being transferred to a rehab. I do not accept that - he has progressed a long way since that 1st assessment was done, and I hope to bring him HOME much sooner. The Doctor here stopped in after I left last night and told Butch he thinks maybe 6 days after seeing his progress. Yesterday we piled the wound vac in the wheelchair and he pushed it - I brought up the rear holding his britches - they were falling off from the weight loss! We walked about 50 to 60 feet down the hall - he weighed himself there - there is a weight thing like they have in doctor's offices - 153 pounds - could be worse, but - we need to work on that. He rode back, and we did that again here later - walked, I mean. We were very glad to get that pleur-vac off him - now there is just the wound vac, and infusions of antibiotics - and MANY pills - for assorted purposes. I don't think he had ANY pain meds since Monday - says he doesn't need them! We are in a double room now - with a guy named Randy who also has SERIOUS complications following surgery - a tracheotomy and temporary dialysis. His wife is here, and they are playing cd's - sort of 60ish folk music - very nice - they are folk singers for a hobby. Butch and I are going to go for a stroll soon - we have this down pat. She has her computer and I have mine - things are pretty good - nice company for Butch.

Faith is the ability to not panic - Unknown

2008-08-11T08:29:00.005-04:00

We saw Dr. Gamblin this morning, and he said all numbers still look good - this includes liver and kidney functions, and he got another x-ray - of the lung. Says the drainage is slowing down, and maybe pleur-vac can come off today. He told Butch and I he has been reading our blog - and that he needs to eat his peas for sure! Rehab is looking closer - today we will walk a bit more, go for a spin (we need to wait for it to warm up some - it was 54 degrees here this morning!), do the leg exercises, and EAT! I still don't know about the stent situation - the j-tube is filling up, so it is draining properly - they said it does not need to be done immediately - I guess we are in a "wait and see" mode. He is off all IV's (again) - just needs an infusion every few hours of vancomycin and cefepine HCL - both antibiotics), but still hooked up to the two vacs - wound and pleur. Did I tell you the yellow tinge is almost gone now - and his face has a bit more color. He is very, very thin, however, and it will take a long time to build back up - I am confident, however, that he can do it. His blood pressure is low - but - it always ran low. glucose level is coming down - shot up to the 200's for a few days (when he first started eating again), but - is running 125 today.

It is now 10:00, and we have walked - with the physical and occupational therapists - out in the hall. We walked about 50 to 60 feet, and I followed behind with the wheelchair, then he rode back. That was good - he has arm exercises to add to the leg exercises now, and he is gaining ground. He just asked me what channel The Price is right is on - and he is back to hogging the TV remote - I take that as a good sign. He also is not interested in listening to that healing channel anymore - but I still enjoy it! Some friends that we have met here - the man had Whipple Surgery 3 years ago, and the tumor came back - he just had liver surgery again) just stopped in to our room on their walk up and down the hall - he was operated on about the same time, and he is JUST going on solid foods today! Walking pretty good though, I thought. We are the "band of Brothers" here - all the people from the 3 Family Houses that ride the shuttles back and forth to the hospitals, and all their loved ones here at the various institutions. We share our triumphs and our sorrows, and it is such a good thing for all of us. There is a lot of sadness, but - sometimes great joy, also. When someone gets that long awaited transplant, or takes a turn around the corner toward better health, everyone is cheered up, and happy for the people that have persevered and climbed out of the pits! All the nurses were cheering on Butch this morning, also - they saw him slip back and are happy to see him climbing out himself. There are transplant people here who languished on lists for - literally - years - at the Cleveland Clinic, Mayo , etc. This is the place that will accept high-risk people and try to save them. That means that many of the people here are VERY ill, but - they are being helped. Butch is a perfect example of a "high-risk" patient who was accepted here for surgery when more conservative institutions wouldn't touch him. Because of the "high-risk" factor, more complications can arise - and - they have - but - we need always to remember where he would be if he HADN'T attempted this.

We talked to a lady from the "Select Specialty Hospital" - which is basically the South unit on the 8th floor. They are thinking of placing him there. In order to be on the rehab unit, you have to be able to endure 3 hours of therapy a day, and he can't do that yet. He also has "special needs' - the wound vac, among many other things. So - we will probably go there, and from there to rehab, and on to home.

God IS good, and he is here with us in this place. We can feel his presence - Couldn't have made it this far without him. Remember the 23rd psalm? "Yes- though I walk through the valley of the shadow of death, I will fear no harm, for thou are with me". We are mindful of that psalm, and try to always remember it.

I have posted a picture of Butch outside the Hospital - he looks pretty good, doesn't he? He pushed the IV pole with the equipment on it, and I pushed him! We are quite a team!

It's Sunday again

2008-08-10T09:15:00.008-04:00

A hard beginning maketh a good ending - John Heywood (1497 - 1580)

When I got here this morning, Butch is doing better than yesterday - when the cart came around, he asked for French Toast with his breakfast - always one of his favorites. We always go out to breakfast after church on Sunday, and he very often gets French Toast, or - even better - waffles. He has evidently decided to rejoin the land of the living because - he cleaned his plate! He has mentioned a couple of times that his Brother Tom was right - he HAS to eat, or he won't ever get better (no matter that that has been my mantra day after day - why listen to me!). Tom - thanks for backing me - when some of the Doctor's were telling him it was fine - "just drink the ensure" - it was hard to swim against the tide, but - now that he got in a state where he is COMPLETELY run down - everyone is saying - "eat, eat - you have got to eat"! Anyway - it is definitely better. For a few days - he was asking everybody if it was OK to just drink the ensure - and they were saying it was OK! He was giving me dirty looks and inferring that I didn't know what I was talking about! Then - thank God, he asked Dr. Gamblin, and he said of COURSE Butch has to eat solid food - he and Tom started to turn the tide. FOOD IS STRENGTH. Anyone that knows Butch knows that he has been a pretty good eater - can really pile away some food if he wants to - it has been just so hard to see him in this anorexic state! Anyway - things are improving each day. OK - enough obsessing about the food situation.

Today is another cool day - high 50's right now - at 9:45 AM. The weather certainly has changed - this is late September weather - it is beautiful, though. Sun is in & out - blue skies/grey skies - sort of like our lives! I lost the only sweater I brought with me - don't know where - probably on the bus, and I need to take the city bus out to Target to buy another one - Joyce's big adventure - need to change buses - Target is on the other side of Pittsburgh, so it will be a change of scenery. I am on corner 3 out of 4 on the Christmas table topper, so - I might need to go to Michael's also - to pick up something else to work on. I finished reading "The Shack" - a very inspirational story about a man who lost his youngest daughter to a child molester. I am now reading "Tallgrass" - a story about the Japanese "holding" camps that we set up out West during WW11 for Japanese/American citizens. I also have a book of logic puzzles with me - exercise for my mind. Last, I have walked further , since I have been here, than I have walked in YEARS! If it wasn't for my poor back and shoulders - I would walk even more. Yesterday when Butch was combing his hair, he said he never thought we would be here long enough that he would need a haircut - well, me too! I should have taken an apartment.

We have walked - it was the first time in 2 weeks that he has walked further than from the arm chair to the wheelchair - 5 feet! He did well - I carried the pleur-vac, and we unhooked the wound-vac ( we got permission 1st, of course! He walked about 30 feet down the hall and back - totally wore him out, but - it's a start. We have some exercises to do for his legs, too - the therapist says that for every day in bed, it takes 2 to 3 days to overcome the inactivity.

Well - it is 5:00 and I did take the bus to the waterfront shops, where there is a target. Enjoyed the couple of hours out of this atmosphere - bought a new cardigan - will try to hang on to it this time. It was a pretty drive, along the street that Carnegie Mellon is on - lovely old stone buildings - and a nice view down along the Allegheny River. While I was gone, they gave Butch another x-ray. The one from yesterday showed a lot of fluid still on that lung, so - he has the pleur-vac on for another day. I really hope that fluid is gone and he can get off that thing. The Doctors haven't come in yet this afternoon - this morning they stopped briefly and said - "carry on - try to move around, and EAT".

What's new on Saturday

2008-08-09T13:06:00.011-04:00

"Little by little one walks far" - an old Peruvian saying.

Late yesterday they took Butch back down to put a drain hookup in for the pulmonary effusion (fluid collecting in his lung) It is draining now - they will take it out tomorrow. There is not as much this time - last time they drained out a liter - it is about 1/3 of that this time - so far. There is a little machine - called a pleur-a-vac that is draining. It sits right next to the wound vac. Because of this problem with the lung - he still has oxygen on, but hopefully that will be gone tomorrow. He goes for periods of time w/o it, but - any exertion - even sitting in the chair, and he needs some oxygen. Later today they are taking a lung x-ray to check on the progress.

We did manage to get scrambled eggs and hot cereal for breakfast for him, but - then I realized they didn't give us the menu selection for yesterday, and none was forthcoming for today. I called the service representative (from dietary) and told her. When I called two nights ago - the girl on the phone said to me "Give me your fax number and I will send you a menu selection". I told her - not very politely that I was a customer, not an employee - don't know the fax number. She basically said "no fax number - no menu selection". I went out to the desk and asked the girl there to give me the fax number to tell dietary, and she said that was ridiculous - they were being silly. In the end - no dinner, I bought him dinner from the cafeteria (again). Yesterday - no meals because of testing - but we fixed him up with something from here. Today - nothing if I didn't get this straightened out! Well - she checked and said there was a "hold- no menus or meals delivered" until someone (can't be me - I am not an employee - someone with authority) changes it - naturally, she blamed the floor personnel for not taking it off after the tests were done last night. The floor staff said - not true - if it were, he wouldn't have got the a la cart for breakfast. Well - I was pretty hot, and the person on the other end of the phone agreed that there was a good reason for my "distress", so she took the lunch and dinner order over the phone, had someone hand deliver the menu selection paper for tomorrow, and - set me up for free guest meals today - anything I wanted. I was mollified, but - we shall see what happens in the future!

I did manage to take him outside to a pretty gazebo near the front entrance. It was quite a production, what with all the equipment and all, but - he did enjoy being out there for about a 1/2 hour. It was a bit on the cool side today - more like September weather than August we thought (temp in the low 70's - unlike Dallas, where Sharan said is was 107!) , but it was very pretty - beautiful blue sky and big puffy clouds. There are beautiful flowers planted in this "Tranquility Garden" - black eyed Susan's, hydrangea's, portulaca, huge white flowers (looked like moon flowers, but - moon flowers bloom at night), and many other plants and trees. There are bird baths and a couple of fountains, and many birds, and it was very peaceful there. Will get a picture when we go out tomorrow - don't have my camera today. He spent most of the morning in the chair next to the bed and the wheelchair, so - nap time now - he is zonked. That drain into the lung is hurting him, so that takes a lot out of him. I forgot - he did walk - a short bit - back and forth to the wheelchair.

No one has said anything about the rehab unit in the last couple of days - until the lung is under control - I don't think that will happen. But - I told him we will continue our own occupational and physical therapy - I keep track of the ADL's (activities of daily living) and write it on the paperwork on the door for him - everyone seems happy with the progress that he is making, so - I believe we are on the right track.

He has been watching much more sports and news on TV - and eating quite a bit better - when they let him eat. He is VERY frail and thin, but - I do see progress. Yesterday - he asked for a vanilla milkshake, which I went downstairs and bought him - it was the 2nd thing he has asked for since the operation - the 1st was a chocolate smoothy, which he liked a lot. Although we were trying to stay away from sugar - now is not the time to be restrictive - my theory is - if he wants it - he gets it! We thank God every day for getting him this far, and ask for continued grace to see it through.

Friday - skipped Thursday

2008-08-08T09:03:00.007-04:00

"If you want the rainbow - you have got to put up with the rain" - Dolly Parton

The shuttle was late yesterday - when I got here (about 10 of 8:00), he had already been taken down to GI for the ERCP. I caught up with him in pre-op, and stayed in the waiting room until they called me (8:30 to 9:30). He had two medical charts that traveled with him on the stretcher - LONG medical history - just for here! The Doctor was not able to do the procedure - the tube will not reach down as far as they need to go. So - today - they do two stents - one for each side - externally. We are waiting now for this procedure.

He does have more color today - in his face - and is MUCH more alert, and talking a bit. He has recovered his sense of humor, and that is a VERY good thing. This morning I brought his hat back in - I would love to take him in the wheelchair to the gazebo and garden I found on the grounds - it is beautiful - flowers and birds - fountains, bird baths - very serene and quiet, except for the nature sounds. Maybe this afternoon - probably not until tomorrow, though. This morning is the 1st he has stated that he is getting better - slowly, but surely.

Last night they did the CT scan, and found the other infection they thought was there - need to reposition the j-tube (pulling it up) - it is collecting stuff in the position it is in. Also saw fluid around the lung - causing the breathing problems - need to drain it.

The Doctor's come and go - I know most of them, along with the nurses and aides. Except for the dietary screw-ups (which continue to infuriate me!), things are much better now. I honestly do feel that - when it comes to liver problems - you can't go anyplace better - UPMC knows livers, and Dr. Gamblin and his team are the best. They have the same goal in mind that we do - get him recovered and - out of here! Hospitals are just no place to be when you are sick, but - they are necessary for our survival!

Later on Friday - they attempted the stents - were not able to complete - because the bile ducts were not dilated enough. Need to do some OTHER procedure - this is VERY frustrating,but - it is because the sclerosing cholingitis has hardened and scarred those ducts - Doctors ALWAYS have trouble with them. Not sure if they are going to do this today or Monday - or if repositioning the j-tube will solve the problem and he won't need them! Stay tuned for next newsflash.

Did I tell you about the gelatta? Yesterday I walked down to Forbes St. (eateries, shops, etc. - about 3 blocks away from the hospital). They have a place called Rita's - bought a gelatte - layer of custard, layer of lime Italian Ice, layer of custard - yummy! Going to do it again today - different flavor, though - to try something new!

3 weeks today

2008-08-06T19:34:00.005-04:00

I talked to Dr. Gamblin this morning, and he said that the number 1 problem with all liver resections is getting the remaining liver's functions back to normal, taking over everything that the whole liver previously did. He feels that we have accomplished that - Butch's liver is functioning normally, with good readings. The
2nd biggest problem is infections - when you tinker with the liver, it leaves the patient open to all sorts of infection problems. We are working on that problem now. Tomorrow, Butch will have another CT scan. He couldn't have it today because they need to have him on something to protect his kidney for a 24 hour period before they give him the dye they need to do the CT scan. When he came into here his Creatin level (kidney function was 1.4 - now it is 1.5 (he had a problem already - remember?). They want it at 1.0. So - tomorrow - they will do the CT scan to see why he is so weak - nothing is showing up in the bloodwork - except white count is off. The Doctor said tonight it may just be that he is severely anemic (Well - he DID bleed all day on Monday!). They will probably give him a transfusion tomorrow if that is the case. Also, they say they have a 50 % chance of success at the ERCP (down the throat) to put the stent internally - if not - procedure to do an external stent - all towmorrow. Tomorrow will be very rough, I am afraid.

He was more like himself today. Did I tell you that the day we went outside - he asked about his HAT! - He had a hospital gown on, for goodness sake, and he wanted his hat! Two days ago I was blogging on the laptop at the hospital. I did something -don't remember what - and the computer made a strange sound. He woke up out of a drugged sleep , looked at me and said "what did you break now?". Today, as the Doctor was doing a procedure on him (setting up the wound vac), he started talking
about the presidential election with him! He is coming back - I can tell. If we can conquer the weakness (he is gasping for air if he moves around at all), I think he will be around the corner.

They hooked up the wound vac - it is this machine that vacuums up the nasty stuff in that big wound, so that it can - supposedly - heal in half the time. Dr. Gamblin said if he had invented that thing - he would be playing golf right then instead of doing rounds! He also said if this goes on much longer, he will have to come to Endicott and caddy for Butch! The dressings only nee4d to be changed every 2 to 3 days now, instead of 2 to 3 times a day - that is wonderful.

Transitional unit is on hold until we find out about the weakness - maybe the end of the week, I hope. We had a student nurse today - she was wonderful - attended to his every need (that she was allowed to). He got all the ice water he wanted, fussed over, and the real nurse checked in on her to be sure everything was OK. I think they gave her to us because I was such a pain - but - It was good for us, and good experience for her too.

I am sad to tell you that Bobby died yesterday - Sharon was flying home with the casket today. He was such a nice man, and struggled so long and so hard, it is such a sad thing - he got pancreatitus, and couldn't recover - his body just shut down. He died peacefully.

On a happy note, tonight a family that adopted Family night put on a summer picnic - barbecued ribs, chichen, fruit kabobs, all kinds of home made salads, and wonderful desserts. They do this once in a while - Christmas party, etc. They had such nice decorations, and I won a door prize - assorted teas, mug, magazine. It was very sweet, and everyone had a very nice time.

"And this too shall pass" - I hope.

Rainy Tuesday

2008-08-05T12:02:00.012-04:00

One would think - what with the fit I threw yesterday and all - that today would have gone very smoothly - At least until the patient advocate returned, which she said she would do. Well - one would be incorrect. They forgot his breakfast - and - by the time they rectified it, the only choice was cold cereal. I was not happy - they said it was because they thought he was going to have the ERCP this morning, and when they realized he was not going to have it, they called dietary -BUT - you know the rest. I did get a telephone call from dietary - apologizing and asking about lunch and dinner - they lost the menu selection I made out. I leave the remaining comments to you all!

As for The ERCP - the ONLY person with enough experience to do his potential ERCP turns out to be off until Thursday - so - we will BEGIN to schedule him again on Wednesday night. They have stopped by - a Doctor from Dr. Gamlins team, Social worker, etc. - to say they will put him on another floor - a "step-down" unit - he no longer needs this level of nursing care - needs rehab and therapy. This morning he is still white and pale - all the color drained out of his body with the blood loss - but a little color has come back in his cheeks.

Joyce's therapy report - He sat in the chair while we washed up - he shaved - ate in the chair, and we walked around the bed to get back in. Then lunch came - ordered soup and a sandwich - they forgot the soup! When I complained - the aide ran right down to the kitchen. When she came back - she said -"the reason they didn't put the chickn noodle soup on the tray is that they ran out of it - here is some beef broth - OK?" Now - I wonder why they didn't put a substitute on the tray in the first place? Also - they forgot the ensure - I give up! Anyway - we walked around the bed again to get in on the other side - after he sleeps for an hour - we will try the chair again. Therapy just now came in - but - we don't really need them - just need Butch's strength to come back - and - it is - a little at a time. I made him "trail Mix" for this afternoon chex mix, raisins, goldfish, and he snacks on that. Today - he ate what we managed to get for him here, also drank fusion, Tropicana, ate an orange, and a yogurt. Not bad! Tonight is spaghetti and meat sauce - if they deliver it that is - what are the chances??

He is off all IV's and medically - he SEEMS to be fine right now - except for the strength - he still needs an assist from oxygen - gulps for air everytime he trys to do anything - I hope this will get better with time. Of course, we still have the problem of the j-tube and the leakiy bile duct - Thursday will fix that (I hope). Also - they are delivering a wound vac - which we will use to "vacuum" out the wound - it is one of the reasons we cannot be discharged. It will promote healing of that wound -
Now we just have to wait for a bed on the other unit - they are ALWAYS full, the social worker said - so - who knows. She mentioned that if we could not get a roomn here - amybe he could go to Magee's women's Hospital - a few blocks away. They have a rehab, and - it is not just for women, and - the shuttle that I take from Family House stops there. At this point, that sounds great -BUT - a couple of people have already complained to me about Magee's. I hope to find out later today. We are listening to the soothing music while Butch sleeps, and I am going to try to take a nap myself - in the chair next to the bed. All this complaining is EXHAUSTING me.

Thumbs Down

2008-08-04T20:07:00.003-04:00

I am going to write just a short blurb - will take the laptop to the hospital tomorrow and write more there - too tired tonight. They did not do the procedure to put a stent in today. When I got there, they had him ready -nothing eat or drink from 11:00 pm last night. Well - at 2:00 PM they still hadn't come to get him. After inquiring politely about things for 3 weeks now, I am afraid I lost it - went out to the desk in the middle of the unit and asked - loudly - for a patient advocate. Explained I felt they were trying to KILL - not CURE - my husband. I said a bunch of irrational things, and some very rational things, also. Well - my goodness - I should have done this 2 weeks ago, I guess. I got EVERYONE'S attention -doctor's, nurses, administration, dietary, and the patient advocate. Truthfully, I have been afraid to do this - with him at their mercy, he asked me not to make a fuss, and I was afraid they would take it out on him, but - it couldn't get any worse, anyway, and - I sure pray it helped. They were - I guess - just going to let him lay there - no food or drink - after he bled all day yesterday - for who knows how long - turns out they weren't going to get to him today - just hadn't notified the floor (they said). Employees came in to inquire about his welfare this afternoon that have avoided us like the plague prior to my tantrum. They told me it sometimes is 8:00 in the evening before they take them down. We are going to try again tomorrow - I hope my complaints get him an early morning appointment. I will wait until 11:00 to start my act. This should NOT be neccessary, but - whatever it takes is what I'll do.

That's all folks - walked to CVS (that's the only store within walking distance). I do my grocery shopping there! I bought myself a triple dip nutty buddy and ate it walking back to Family House. That made me feel a little bit better.

Addenda to Sunday

2008-08-03T16:17:00.010-04:00

To anyone who read the earlier post and was worried - it is 4:00 and the floor surgeon has sutured up two blood vessels that were cut when they punctured that hematoma this morning - that is what was causing all the bleeding. The blood work came back fine, and HOPEFULLY - this will solve this problem, and he won't need any additional blood. He is resting now - will get into the chair for the evening meal, we hope.

I forgot to complain about last night's dinner. When he moved, his food still got delivered to the cardiac unit. We told them to get him a tuna fish sandwich on whole wheat, and some tomato soup. I HAD to leave, as the last shuttle on the weekends leaves at 6:30. She was supposed to be getting it when I left. Also - I told them to get his ensure out of the refrigerator and give to him about 9:00, along with some yogurt. Well - NONE of that happened - he went without, and - when I got here this morning - he had cold cereal and cranberry juice for breakfast - that's all! This is the reason I feel I must be here almost every hour - if I am not - he suffers. It is totally ridiculous. We told the Doctor's this morning, and they said they would look into it. Translated - that means - nothing will happen to change this screwed up system. When I get him him - I WILL be writing a letter to administration, you can bet on it. I might also speak to the patient advocate - I just need to be careful while he is in their hands, we believe. Now that he is here, on this floor - the food delivery should happen, but - JEEZ! There - I feel better.

Do you remember Susan? The lady who needs small lungs? Well - a pair came in this last week, and they gave them to someone else - who needed them more (She got bumped) ! She needs them pretty bad - she needs to decide if she should stop taking her meds - so that she can worsen enough that no one can go in front of her, but, needs to not die from the effort. Some system, huh??

Bobby and Sharon - they are staying at Family House with us. They are an 8 hour drive South away. Bobby needs a liver - this is his 4th liver - his body rejects them after a period of time. 3 weeks ago he was in intensive care and Sharon was given no hope. He pulled out of it and they came here last week - drove up. He had gained 100 pounds - fluid - and - they drained it off. They drove back,, had been home 2 hours, and got a call - liver was ready. They airlifted them back here, and he went in. The Liver was bad - no good. They stayed here, as he is too sick to go home again. In the middle of the night two nights ago - he went into liver failure and pancreatitus. He is here - in intensive care, and no liver in sight. I see the helicopters landing and taking off - from the roof - about every 5 minutes. They are bringing in patients, and organs, from all over. Yesterday 4 livers came in - all bad. When you see this, it is a glimpse into a world that most people never need to view or understand - just heartbreaking.

One step forward, two steps back

2008-08-03T13:36:00.008-04:00

Well - today is not so good. When I got here, Butch's wound - from the surgery - is seeping blood, and wouldn't stop. They told me they found a hematoma (blood clot) in the wound, and he punctured it. Then they tried to clean up the wound and stop the bleeding. They are going to stop the lovenex (I thought Dr. Gamblin said to do that two days ago). If it doesn't stop by itself - they are going to give him blood this afternoon. He must. of course, stay in bed, and isn't moving around - more weakness will ensue. In addition, the j-tube is draining again - it is handling the bile that should be running through a bile duct into the intestine, and it was almost stopped - flowing to freely now - to nowhere, so - tomorrow, they will attempt an ERCP (go down through the mouth) to put an internal stent in there to drain to the abdomen. They say - because of his anatomy - there is only a 20 percent chance of this being successful - if not, they will have to do somwthing more invasive, and give him an external stent. In any case, we hope this is not permanent - we will find out in a few weeks., the doctor said.

The food situation got ALL screwed up when we transferred back to GI recovery - which we did last night. We are in N-1063. I just went to the cafeteria and bought us both a huge piece of pizza - lunch was simply not edible. The nurse said to wait a little while (hoping that wound will stop bleeding), and then maybe he can sit in the chair for awhile. he is still pretty alert today, but - this is VERY disccouraging. Caroline - I asked him your question - he said he is not ready for golf next week - but - he will play again.

Dr. Gamblin is apparently a day behind on the news - when he was in this morning - before all you-know-what broke loose - he was talking about discharge in a couple of days - to some rehab facility! No wonder we are confused - I can bearly get what is happening written for you all, and it changes! This is the news as of 1:50 PM!

A Red Letter Day

2008-08-02T14:30:00.005-04:00

We had a good day today. When Dr. Gamblin's team came in, they said all the numbers are falling into place, and he is really in pretty good shape - except for strength and endurance. He has not been out of bed - to walk - in 5 days, and is very weak. But today - we have made great progress. He sat in the chair from 6:00 to 10:00, and I just got permission to take him for a spin outside - as you can see in the picture. It is the 1st time since the 16th he has seen the clouds - beautiful day - with a little breeze and puffy clouds - and he really enjoyed the tour (since we are in Presby - we had to cross the passenger bridge to get over to Montefiore - there is no outside on the Presby side - it abuts the Children's Hospital). He also ate very well - I am SO encouraged - he is back in bed now, watching golf on ABC - the Trans Am I believe. We stopped into the chapel on the other side - very quiet and nice.

We really need to work at this weakness problem, as they are talking about discharging him to a rehab facility - nearer to home - and - that is OK if we have to, but we prefer not! It will depend on him regaining his strength. He said he can feel it returning as he gets up, moves around, etc. That heart probelm (which was probably caused by the septecemia) set him WAY back, as he couldn't do anything for a few days - without setting off the heart monitor. Anyway - he has walked a bit - back and forth to the chair and the wheelchair, and I feel we are gaining stride here. It is a very good thing that they causght that infection early - it was bad enough as it was!

I posted that picture of the lunch from the other day, and today's lunch was really very good - pasta with meat sauce and a nice salad - that's what we asked for, and that's what we got. He also had scrambled eggs and oatmeal for breakfast - and I didn't have to buy the eggs at the cafeteria! If dinner is edible, we have a home run! He understands now that the way out is through his stomach, and he is really making an effort.

Mellie got back OK and the girls and Glenn were glad to see her - they also liked Fred and Ethel. Thank goodness she was here just before we turned the corner - when I really needed her. I think we are good to go now. Did I tell you we are leaving the cardiac floor today - going back to 10 North at Montefiore - GI recovery. Just before Dr. Gamblin left, I asked him when does he think? Monday? (remember , Dr. Yu said Sunday yesterday and I almost collapsed). He said "let's evaluate it again on Monday and see." So I don't know - but - barring anything else going wrong, I think it is fairly close - just don't know where to.

I am thankful to God for carrying us through this far, and ask him to take us all the way - back to Endicott safely. I know that he heard all of your prayers , and am so grateful that Butch and I have so many people thinking of him, and praying for him. It has really been good for me to have this blog - I am really a long way from home, and the blog has helped me to not be quite so lonely.

Talking about going to Family House

2008-08-01T11:58:00.005-04:00

Mellie left about 10:30 - after talking to his nurse and saying good-bye to Butch. Her morning report - "changing from Lovenox to Coumadin. Heart beat has gone into bradycardia 56 - 59 BPM. Probably lopressor may get switched back to 37.5 mg. Lasix is stayin @ 20 mg IV. All else looks good. 0 labs so far today".

What that means is that the heart beat is swinging back and forth between the two conditions, trigeminy and A-fib. They are adjusting the medication accordingly, and are getting closer - the cardiology team is happy with the progress. 2 days ago his legs and feet were so swollen -it looked like he had elephantitus - the swelling is almost all gone (the lasix part).

As for the infection - haven't spoken to the infection control team yet today, but - they said yesterday infection is almost gone. He is on a pill now, so we can leave when everything elso is OK. Switching over to counadin will help with going home also. As the electrolytes get stabilized, and he uses less and less pain medicine, his confusion is clearing up.

Dr. Yu - from Dr. Gamblin's team - came in and said we should be in control of that heart beat soon, and - he is thinking about discharge. He talked about POSSIBLY Sunday , and discussed with Butc and I whether we should go to Family House or a rehab facility - naturally, Butch wants to go to Family House. I just worry because he is SO weak - hasn't walked in 3 or 4 days, can't even sit in the chair without discomfort. Because of that, I said until Physical and Occupational therapy takes a look at him, I withhold my vote. They came - about 1/2 an hour later, and evaluated him. When they got him standing up - his blood pressure dropped, and it is already low. So - they got him back in bed and today he is going to try sitting up for periods in the chair and breathing into the spirometer. Tomorrow , he will try walking again.

He ate solid foods again yesterday - and today - he is doing quite well with the solid foods. Mellie and I went to the store and brought him frest fruit - cut up melons, strawberries, blueberries, etc., and he likes that. Also - brought him scrambled eggs abd he ate most of them (I finished them - can't waste food, you know)! The breakfast they offer you is VERY limited - cold cereal or instant oatmeal, a banana, hot coffee or tea - you really need to supplement it with something more substantial. He really likes that berry V8 fusion, and drank it even when he was terribly ill. That is great stuff - an 8 oz. glass is a full serving of fruits and a full serving of vegetables. With that and 2 or 3 ensures every day - you can go a long way towards making up for the lack of nutrients, BUT - without solid foods, you can't really get your strength back. And - he really didn't want to go on the total parental nutrition by IV if he didn't have to. So - food is coming along.

I can't tell you how much it boosted me up to have Melanie here with me for a couple of days. I am feeling much, much better now. I got a little more rest, stepped up my medicine (after consulting the Doctor), and we spent a bit of time away from the hospital. I am learning that this is MUCH more difficult than I anticipated, and I must learn to manage the stress. I have been waiting for him to turn the corner, and it looks to me now that - it is "just around the corner"! However - since things change on a dime here in this altered state of reality - let us not get our hopes about discharge up to much - and - I want him to be stable when we leave.

To anyone who is reading this from work - I don't really like being on this end of the medical spectrum - I would love to leave medicine to the professionals and be dealing with computers! I have seen - up very close - how the computer systems are utilized here by the clinical staff, and what they think of the system - there are a LOT of manual systems in place - everyone seems to have one, in addition to the elctronic system, due to - among other things - a basic distrust in the stability of the computer system - for very good reasons, they assure me. They are in the midst of going total electronic - but - have a LONG way to go, I think. I miss you all and am looking forward to a future when Butch is on the road to recovery, and I can return to work. After this, work will seem like FUN (I hope).

Another good day

2008-07-31T21:19:00.002-04:00

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.

Two Weeks today - it's a better day

2008-07-30T15:54:00.009-04:00

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!

Blue Monday

2008-07-28T19:01:00.007-04:00

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.

Sorry I skipped a day!

2008-07-27T11:07:00.008-04:00

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 chlangiocarcinoma.org 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 - a setback

2008-07-25T19:50:00.005-04:00

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.

Going to Family House tomorrow

2008-07-24T13:50:00.003-04:00

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 - one week today - making progress

2008-07-23T19:19:00.008-04:00

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 - out of surgery a week tomorrow

2008-07-22T20:53:00.004-04:00

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 the 21st

2008-07-21T17:49:00.004-04:00

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 - a long day

2008-07-20T19:48:00.003-04:00

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 - Butch goes to a regular room

2008-07-19T18:48:00.003-04:00

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.
15213

The hospital is :

UPMC Montefiore Hospital
200 Lothrop St.
Pittsburgh, Penna.
15213-2582

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.

2nd day after surgery

2008-07-18T20:16:00.003-04:00

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.

July 17 - Operation Successful

2008-07-17T08:04:00.004-04:00

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.

Leaving for Pittsburgh tomorrow

2008-07-14T21:15:00.003-04:00

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.

July 8 -Surgery one week from today

2008-07-08T09:08:00.001-04:00

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.

June 30 - 2008 - The Doctor's Opinion

2008-07-01T14:28:00.000-04:00

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!

June 29, 2008 - Day 1 in Pittsburgh

2008-06-29T20:20:00.000-04:00

Well, here we are in Pittsburgh. Family House is very nice - we are in a suite (for $50.00 per night) , as that is all they had available when we got here. I will probably try to switch tomorrow - for a double ($ 40.00 per night). I will get some pictures together in the next few days to show everybody, but - for now - I have posted a couple of pictures.

The drive yesterday was beautiful - we came down through the Alleghenys, and the mountains were so majestic. Also, the weather held for us - didn't rain until we hit the Interstate outside of Pittsbugh - then it just poured cats and dogs, but - we managed to make it intact, although we did get lost once - a detour that took us all around the county did us in! That caused an argument, I can tell you, but - we survived, and - nobody got physical. Since we were supposed to check in before 8:00, and we didn't get here until 8:30, we were getting nervous, but they were nice to us and let us in anyway.

Today was just like other weather we have had lately - sunshine one minute, rain the next. We went to church at the United Methodist Church down the street from us - see the picture. It was MAMMOUTH - a landmark around here - looked like we were going to St. Patrick's Cathedral - and there were about 80 people at the service - seated about 800! Anyway - beautiful church, and very different - they had two cantors, and that was interesting. The minister's sermon hit the mark - about trusting in the Lord, and having faith.

We went to Pittsburg Civic Gardens today, and also the Pittsburg Conservatory - beautiful gardens in both places, and the Conservatory had a butterfly room, an orchid room, and some of the most exotic flowers we have ever seen. I can't wait to put the pictures in a slideshow.

Tomorrow, we ride the free shuttle from here to Montafiore Hospital, where Butch has tests at 8:30, and we meet with Dr. Gamblin at 10:30. There are 19 hospitals here that are part of UPMC! It is HUGE, and when you see the pictures, you won't believe it - it makes the Mayo look like General Hospital! Again, no parking near the hospitals, so - shuttles provide all with rides back and forth.

Before we left home, we went to Alexandria's 8th grade graduation, and her softball game. She looked so grown up at her graduation, I could hardly believe this is our little girl - she is beautiful.

I will post tomorrow, and I hope to be giving good news- we have waited patiently this month for this day, and kept the faith. Until then - keep Butch in your prayers, and know that we love you all.

Our Weekend

2008-06-22T20:45:00.000-04:00

We had a great time golfing at Catatonk on Friday with Joe and Carolyn, that is - until we got rained out on the 15th hole - weather went from sunny to rain several times, but we called it quit then. I am sad to report that we got whupped at cards though - roundly beaten!

What a great time we all had today. I included a slide show of Alex's swim party - it says it all! Mom and Dad shared their pool for the afternoon, and the day was beautiful - no rain, thankfully, and beautiful skies - about 80 degrees, and Dad had the pool heated just right - very refreshing. Afterwards, Butch and I went to Michaelangelo's restaurant - we had a gift certificate some friends at work gave us, and he had Fettucini Alfredo - he is trying to load up on calories , in preparation for Pittsburgh. We figure that is good for 800 calories alone, PLUS we ate at Alex's picnic, went out for breatfast after church, and I will make him a dragon slayer tonight - another 800 calories. Now , imagine - he lost 2 pounds this week, and is not even on chemo! - it is crazy, I tell you, and an everpresent battle.

We have decided to skip the Creation Museum - too far off the path, and we will look for things to do in Pittsburgh for Saturday and Sunday - get familiar with the city, etc. I am going to see about a Pittsburgh Pirate's game - I looked and they are at home Saturday night and Sunday afternoon - Butch would like that. There are many things to do there - The Carnegie Science Center is one of the top 5 science museums in the country, the Pittsburgh Zoo is the 4th largest in the nation, and has the only bird zoo in the nation. Sounds like fun, and will take our minds off what is coming up - or - we hope is coming up.

Yesterday we went to the Strawberry Festival in Owego - It was a perfect morning - not too hot, not too cold. We went with our neighbor and friend Irene - she is Flash's best friend, and watches him while we are away. We watched the parade - I uploaded the pictures so you could see the wonderful floats - and ate strawberry stuff - Butch had strawberry shortcake , and Irene and I had strawberry smoothies. Seeing the antique tractors remnded me of the news in Rochester Minnesota that I wrote about when we were out there - the "Bring your tractor to school day" event - that was pretty funny, I thought!

I want to thank all the people who are supporting us and praying for Butch's recovery. I can't tell you how important that is to us. We know that God is listening to all of our prayers, and derive great comfort from that fact. Keep the prayers coming, and we will continue to think positive thoughts along with those prayers. I have a friend that reminded me that no matter what happens, God is still on his throne. That is so true, isn't it?

A little update

2008-06-20T11:13:00.000-04:00

Butch is mowing the lawn, and then we are meeting Carolyn and Joe to go golfing. Their plan is to win back the title of pinochle king and queen. OUR plan is to keep it! Carolyn is cooking our meal - spaghetti, with whole wheat pasta, and organic tomatoes. I bought a pillsbury cake mix - 1/2 the sugar, made with Splenda. They say of all the sugar substitutes, Splenda raises the glucose level the least, and - because tumors feed on sugar - we eat the least amount of sugar we can. We are trying to assist the healing process by combining all that is available from modern medicine with good nutrition - eating those

Tomorrow we are picking up Irene and going to Owego to the Strawberry Festival. Our plan is to walk Flash in the doggy parade - Irene bought him some of those big glasses - this should be funny. Irene - besides being our next-door neighbor - is Flash's biggest admirer. Yesterday we took him to Pet Smart and got his summer "do" - bath, pedicure, and teeth - he is all ready to be paraded! He is included in our pictures - isn't he handsome?

It has been raining off and on for days - the sun goes in and out. I have transplanted many of my perennials (purple iris I brought here from Pulaski St., lillies, lily-of the-valley, hostas) and placed them all around the foundation of the house. I told Sharan if I don't go back to work soon,
I will be planting the roof - it is the only place still bare!

We called a place called "Family House" this week, and they put us on a list to stay there. We have to call when we get there. It is only $40.00 a night for a room . Family House is a not-for-profit Corporation that offers lodging to patients and families who travel to Pittsburgh for treatment of serious illness, It looks to be a very nice place, and I have included a link to their site if you are interested, along with a link to UPMC itself. They have a free shuttle service to places on the campus, which will be very nice. She is trying to get us into the Family House near UPMC Montifiore Hospital, as that is where our introductory letter says for us to go. The letter from UPMC says an escort will be available to assist in getting us from one place to another.

Father's day

2008-06-15T19:53:00.000-04:00

We have had a nice day at Mom & Dad's. It was beautiful, and Dad had the pool ready to go - great swim, and everyone had a nice time. Glenn and Mellie brought Norma, so that made it nice, also. We brought the girls home with us, as Glenn and Mellie are going to Atlantic City tomorow, on a bus trip. We stopped and bought invitations for Alex's birthday party - although her 14th birthday was on the 5th, she is having a swim party at Great-Moms on the 22nd, with her school friends. They will stay here tonight and tomorrow night, and I will take them to school tomorrow and Tuesday.

I started Physical Therapy for the bone spur in my shoulder this week - have been twice. The therapist doesn't know if he can help me permanently - he can reduce the pain from the pinched nerve, but can't cure the bone spur. I might have to consider surgery, but - I will try cortisone shots first, if the PT doesn't work.

The plans are solidified - the 30th in Pittsburgh. They sent us a package for Butch to fill out, and information about the liver cancer center. They sent some info about places to stay, how to get there, etc. There is a non-profit called Family House which is within walking distance, looks - from the brochure - to be quite nice, and is between 25.00 and 45.00 per night - very reasonable. Pittsburgh seems much more organzid than Mayo - they sent us nothing in advance, and we did not know who our Doctor would be in advance, either. The packet cover letter says Butch is scheduled for a CT Scan at 8:30 in the morning on Moday, June 30th at UPMC Montefiore Hospital, followed by a consultation with Dr. T. Clark Gamblin, who I saw on the website is the assistant Professor of surgery.

We had a busy week last week. While Butch played golf on Tuesday , I visited my friends at work. Friday we played 9 holes with Carolyn and Joe, and played pinochle at night - we won! Saturday night we went to Tioga Downs, where I won 4 races in a row! I have to tell you - I place show bets, so - I have a better chance at winning - Butch goes for the win - needless to say - he lost!

Butch is feeling better and better - being off chemo is scary for us, especially since we know it was working, but - he feels better off. Also - the legs are MUCH better, and the pulmonary embolism seems to be melding into the lungs, as it is supposed to. We are continuing our dietary changes, especially as they seem to be helping.

I want to mention that I changed the design so that anyone who wants to write a comment should be able to now - prior to this you needed to have a google account.

Tumor Marker is WAY down

2008-06-11T10:40:00.000-04:00

We got the results - CA 19-9 is 19000 - it was 20000 at Sayre Packer! Lowest reading we have had since we were aware of this monster. Celebration time. Now - we need to hold at this until we get to Pittsburgh and hope no damage was done between Mayo and when we started Chemo - that means the operation will take place. Praise God - remember that the liver function tests are coming down also - and - Butch is feeling MUCH, MUCH better. Didn't help his golf score on Tuesday, however!

I forgot to say that Alex had a birthday last week - she is 14 now, and Sammy is a major league baseball player now (see pictures)!

We are planning on leaving town after Alex's 8th grade graduation (the 23rd), and drive to the Kentucty border - we are going to go to the Creation Museum - we have wanted to go since it opened last year. From there we will go to Pittsburgh.

Our blog is up and running

2008-06-08T20:05:00.000-04:00

As you can see, I have started our blog - I still need to figure out how to copy a slideshow into this site - I will do that, just haven't quite got it yet! We have had a good week - I will try to remember all that happened now as I tell you about it.

1st - about the medical things - Most important, we made the appointment for the Pittsburgh University Medical Centeer - on the 30th of June - we will be skipping the 2 week chemo that would have started tomorrow, and then the week of the 23rd he would be off , beginning again on the 30. The Doctor - Dr. Gamblin - will be on vacation the week of the 23rd, and we needed to be off chemo 3 weeks - so - the 30th it is.

Butch is feeling MUCH better - we did see the primary - Dr. Gearing - on Friday. He told us that the blood work showed a good billirubin reading - normal is under 1 - it was .8 at Sayre Packer, 1.21 when we started chemo, was .5 last week - as I understand it, this number will go up if there is a blockage in the bile duct - causing jaundice. Also - alk phosphatase is coming down - normal - 39 to 122 - before chemo - 654 - now - 451 something (also liver related). All good signs. We had the CA 19-9 tested - will have the result in the next day or two - very anxious to see that one.

Dr. Gearing thinks the pain in Butch's legs - both - comes from phlebitis - the legs are feeling MUCH better - he is still wearing the orthopedic stockings, which helps. Still on the lovenox instead of coumadin for blood thinner - gives himself shots - he will stay on this until after surgery - can't be on coumadin for surgery, and lovenox was better for him right now.

Both white and red counts were high - thought that was strange, as he had a shot last week because white count was low - still not sure about this.

He saw a Dr. Steven Hassig on Thursday - a GI Doctor, about being his liver and bile duct specialist - he might need stents if his bile ducts plug up, and Dt. Hassig has done many of them. butch took him a copy of his records, and he knows Dr. Barrett (the surgeon who operated on Butch 6 years ago for the big surgery), so - he is the Doctor for Butch now - to replace Dr. McDonald at Sayre-Packer,who, as you know, we feel did not adequately protect Butch from this cancer .

Now - for the other stuff - it has been HOT the past couple of days - 92, for example. We have been very busy. On Monday, we took Flash to salt Springs State Park. Butch played 18 holes of golf on Tuesday. Alexandria turned 14 on Thursday, and we went to a celebration at her house. Butch left and played poker. On Friday, Carolyn, Joe, Butch and I went to Cortland and played 9 holes. Saturday , I picked up Sam & Alex and we went to Mom and Dad's to swim - the water was lovely - Sammy got a burn, we had a great picnic lunch. Last night we went to the track at Tioga Downs, and bet the horses. Today, after church, we met Mom and Dad for a brunch at the Holiday Inn Arena - stuffed ourselves while we listened to a harpist play. There was quite a storm this afternoon - cooled things down a bit. You should see our weeks when we are NOT sick!

June 3rd - 2008 - History leading up to now

2008-06-05T22:23:00.000-04:00

On March 10, Butch had a blood clot in his leg which traveled to his lungs, and broke off in many pieces - a pulmonary embolism. The next day, while he was in intensive care, we got the results of a liver biopsy that was done on March 6th, following an ultrasound which showed a mass on the liver - a diagnosis of bile duct cancer (chlangiocarconoma) , which lead to a 7 centimeter tumor on his liver. Here in Upstate NY, not much is known about this rare kind of cancer, so we made arrangements to go to the Mayo Clinic in Rochester, Minn., upon recommendation of some of our Doctors. Our appointment was for April 7th, and we saw Dr. Lewis Roberts. We were there over 2 weeks, for testing and final diagnosis. After a biopsy on April 17, they reported the lymph nodes were negative, and Dr. David Nagorney agreed to go ahead with Liver resection on April 23, BUT , he needed to do a laparoscopy first, as he was suspicious of a malignancy in the lymph nodes , as his CA 19-9 readings were VERY high - 20000 at Sayre Packer back home, 30000 at Mayo, and he felt that indicated a malignancy aside from the liver tumor (normal reading is under 37). The tumor - by this time - was 8 centimeters, but was all in the right lobe of his liver and the portal vein was Ok. He did 3 lymph nodes, and the 3rd (a nodule in the diaphragm) WAS malignant, so they aborted the operation, telling us there was nothing they could do for us but chemotherapy, so we came home for treatment. Their diagnosis - cholangiocarcinoma - metastasis, probably as a result of Primary Schlerosing Cholingitus which he was diagnosed with in 2004.

Our oncologist here followed Mayo’s recommendation of gemcitabin along with xeloda, and Butch has begun treatment . The CA 19-9 reading is 48000 at the start of treatment. He has a blood clot in the same leg the initial blood clot moved from, which has caused a lot of problems (cellulitis) , but seems to be adjusting to the chemo (problems with white cell counts - all that stuff).

In the meantime, I wrote the University of Pittsburgh Medical Clinic (among many others), and they have responded to us, after we forwarded them all the CD’s of the tests, and the medical records, saying they believe that they can do a liver resection - a Dr. Gamblin - Asst in charge of the dept. Butch has to be off chemo 3 weeks, though - so - next week is his off week anyway - 2 on, 1 off. He will set out the next cycle, and then we go to Pittsburgh. Part of the problem is - we were 3 weeks in Mayo, and we are 4 more weeks out now - what has changed since those tests Dr. Gamblin looked at?