Friday, October 10, 2008

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).

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.

Monday, October 6, 2008

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

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.

Wednesday, October 1, 2008

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

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!

Friday, September 26, 2008

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

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 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.

Monday, September 22, 2008

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

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.

Thursday, September 18, 2008

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

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!

Sunday, September 14, 2008

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

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.

Wednesday, September 3, 2008

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

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.

Tuesday, September 2, 2008

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

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!

Monday, September 1, 2008

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

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.

Sunday, August 31, 2008

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

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.

Saturday, August 30, 2008

Life is Life - fight for it

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.

Friday, August 29, 2008

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

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.

Wednesday, August 27, 2008

The Flowers are beautiful

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.

Tuesday, August 26, 2008

Home, Home on the Range - Old Cowboy song

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.

Monday, August 25, 2008

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

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.

Sunday, August 24, 2008

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

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 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 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.

Saturday, August 23, 2008

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

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.

Friday, August 22, 2008

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

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!

Thursday, August 21, 2008

Seek advise but use your own common sense - Yiddish saying

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!

Wednesday, August 20, 2008

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

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!

Tuesday, August 19, 2008

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

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.

Monday, August 18, 2008

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

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.

Sunday, August 17, 2008

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

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.

Saturday, August 16, 2008

Play the hand you are dealt - Jawahareal Nehru

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.

Thursday, August 14, 2008

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

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!

Wednesday, August 13, 2008

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

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

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.

Monday, August 11, 2008

Faith is the ability to not panic - Unknown

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!

Alex's birthday - slide show