Sunday, June 29, 2008

June 29, 2008 - Day 1 in Pittsburgh

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

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

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

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

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

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

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

Sunday, June 22, 2008

Our Weekend

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

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

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

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

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

Friday, June 20, 2008

A little update

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

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

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

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

Sunday, June 15, 2008

Father's day

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

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

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

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

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

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

Wednesday, June 11, 2008

Tumor Marker is WAY down

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

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

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

Sunday, June 8, 2008

Our blog is up and running

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

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

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

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

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

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

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

Thursday, June 5, 2008

June 3rd - 2008 - History leading up to now

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

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

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

Alex's birthday - slide show