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).
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
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
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)
The Doctor made his house call this morning. His nurse called and said he would be here at 11:20, but - he came at 7:30! I was in my pajamas, at the computer. Butch was in bed sleeping. After I gathered myself together, and got some coffee down, we all gathered in the living room and talked. He gave us some samples of nexium (the purple pill) for Butch to take to get rid of that acid reflux - it has only happened once more this week, and he said he can take more than one a day - 1/2 hour before meals, twice a day. We discussed the nausea, and he said he thinks a lot of it comes from the anti-biotics. He has only a few more days on them, so - we'll see. He takes two different meds to keep the nausea down, but he still gets sick. Dr. Gehring said they would call Lourdes Oxygen today and get it set up for Butch. He has a really hard time breathing when he stands up, and we think the oxygen will help him. The Doctor thinks that comes from the cancer - where it has metastasized to the diaphragm is pushing against the lung. This has probably also contributed to the fluid collection in the lung. So, hopefully, the oxygen will give him some relief. As for the jp pouch, it is not draining and Dr. Gehring thinks that is ok - we see no signs of infection - temperature is normal, so - he says - let it go. We also discussed Home Health versus hospice, and Dr. Gehring is Ok with Butch's decision to stay with Home Health a bit longer. He said, as I have been saying for a few days, that Butch seems MUCH better this week. Since he will be coming to the house to visit, and Home Health comes twice a week, and we can have oxygen, and the pain is under control with the medication that we are using, he feels we are good to stay this way for now. I must tell you, however, that the results of the CA 19-9 were not good - 10,349.8 (up from 6500). That tells us that the tumor progression is rapid.
We had been getting a PT INR weekly, and Butch was back on 5 mg. of coumadin. Well, Endwell Family Physicians called me the day before yesterday, and Butch's protime was 8.9! Normal is 1 to 2, they keep his above 2 so as to not get a blood clot - 8.9 is off the charts. If he cut himself, he would never stop bleeding. I went down to their office and picked up a vitamin K pill, he took it, and we stopped the coumadin. We have checked it since, and it is 3.9 - going to have it checked again tomorrow. Dr. Gehring said the big number is from the cancer also, and he probably won't need any more coumadin. I am a little confused, as I understood that liver problems cause blood clots, so he should still be protected, but - as long as we check it and keep it between 2 1/2 and 3 1/2, I hope he will be OK.
There was a posting on cc.org last week talking about new trials beginning soon - by the Mayo Clinic. They will be testing some new chemo's that have been developed for advanced stage CC patients. Of course, this is the beginning stages of the tests - it would be years before anything came to market, but - it is wonderful news at any rate. There are many other things going on in the CC cancer world - we (the chlangiocarcinoma foundation) have developed brochures which we are all going to hand out to local doctor's, oncologists, cancer center's, etc., to spread awareness of CC. And then of course there are the letters to Oprah. These things which we are doing ease the pain a bit for me - I know that these steps toward a cure will someday mean CC will be beaten. I pray the same is true for all cancer.
The 2nd bud opened yesterday on the lily in the yard - I look at it often. It reminds me of God's promise.
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)
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
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)
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
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
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.)
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)
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 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
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
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
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)
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
Numbers are still all good, and therapy says he is in good shape. He still gets out of breath from any activity, but I guess that is normal - it is improving. He can get the spirometer up past 1250, and that is acceptable. In a few minutes, we will go outside - I must tell you, after I left last night, he read a book. He brought along Don Rickles book, which came out in paperback before we left, and he said it was pretty good. I think that is a VERY Good sign - he is coming back to the land of the living.
I am very excited. All of us on cholangiocarcinoma.org are composing letters describing our journeys with this horrible cancer. We are to complete them by September 15th, and are going to try to get Oprah to do a segment on it. We would like to raise awareness, and increase funding toward facilitating a cure. One of the women on cc.org wrote a poem last week, called "wish I had breast cancer", a kind of tongue-in-cheek look at all the things that are wrong with having this rare cancer. And, of course - most funding goes to the cancers that affects much larger groups of people, so we would like to make the public aware of us.
Saturday, August 23, 2008
Happiness is a choice that requires effort at times. - Anom.
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
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
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
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
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
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
"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
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
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
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
Monday, August 11, 2008
Faith is the ability to not panic - Unknown
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!