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!

Alex's birthday - slide show