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.

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.

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.

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.

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.

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.

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.

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

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

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.