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Another quiet day here in Plainfield. Dad is sleeping a lot but when he wakes up and talks, he is still dad, although he struggles to find the words to express what is going on in his mind. Frustrating for a guy who had one of the best commands of the english language.

Dad loves a sunset

Thanks to my mom for letting me be a guest blogger here again. Rather than just give updates, I like to also share some of my thoughts. I don't know anyone who appreciates scenery and photos without people in them as much as my dad, Joe. In selecting this sunset shot over Klein Bonaire he took, I had many to chose from. For more than a decade this is the winter view my parents have enjoyed together in Bonaire to get through those tough, long and dark Chicago winters. I really am thankful for the ability to appreciate nature, vistas and natural beauty that my father has given to me. I imagine that this will be just one of the many reminders that will keep him close to me after he has left this world. As to his current state, he is a joy to be in the room with. I can't get enough of him. So much so that we have started to get on his nerves as we all just hang around him and it is tough to sleep when everyone wants to chat. Some moments he doesn't seem there and then others, he seems like he could go down in the basement and work on a woodworking project with me which was another of his passions. Many would wonder if it is tough to see your dad like this in the sunset of his life? I guess the answer is on the one hand yes, on the other... as long as he is not in pain, I will take as much of him as I can get. Some of you may not know this, but my dad lost his dad to cancer when he was 22. I am so thankful for the incredible time I have had for an adult relationship with my dad, that he never had with his. When I see a pretty sunset, smell pine needles or see deer wandering in a field my mind will always go to thoughts of my dad, pointing these things out.

November 19, 2008

Last night Karen picked up Michael at 9pm. Cassie and Kevin were there and we all gathered around Joe. We had an hour of reminiscing and retelling Joe's quotes and jokes. He was very alert and engaged. It was a wonderful time filled with laughter. Karen's fiancee, Mark, called and Joe had a chance to talk with him which meant a lot. The men's bible study Joe has been a part of stopped by (with our permission) this morning to say a prayer and let him know how much he's meant to them. Afterwards I said to him "I don't know anyone who has as many friends as you". He has loved so many - so well during his life. It is evident at this time when so many want to pour out their love back to him. He is very much at peace and still has no pain. We're enjoying every minute we have. Thanks for your continued prayers.

God Bless,
Mary Anne

November 18, 2008

Hi Friends,
Last night I went out to get a shower present for our daughter and three of our children were here with Joe. He was so funny yesterday we were laughing with him. Today he is even more sleepy and his speech is slurred without any medication. At this time I think we need to request that only family visit. Although Joe is always happy when someone comes, it takes a lot of energy for him to engage and even at that he can only stay awake for a minute or two. We're so thankful for all of your support and prayers. We have felt it so much on this journey.

Take care and God Bless,
Mary Anne

November 17, 2008

My Dear Friends,

The hospice nurse just left a bit ago and she said that she sees even more changes. His lungs are starting to get congested. As the toxins in his body build up because of his liver, it becomes more difficult for him to process what he'd like to say. But his sense of humor is still very much alive! Mary, the nurse, said she can tell he is at peace. Right now Joe is sleeping with Lucky at his side. The nurse suggested no visitors today so he could rest. We estimated he had about 50 visitors from Friday til Sunday night. What a great tribute to Joe and how many lives he's affected.

Karen was supposed to leave this afternoon but Joe looked at her this morning and said "I think you should stay" so she is going to do that. Michael is flying back in tomorrow night so the kids will all be in town.



Over the last few weeks, God has been giving me poems. I 'd like to share another with you that I wrote two weeks ago.



TIME TO SAY GOODBYE (10/31/08)

It’s almost time to say good bye
And a hard hard thing it is.
Please do not fear what is ahead,
Because only the physical is dead.

Heaven awaits you faithful friend,
When life on earth is at it’s end.
And you will be a favored guest,
Because on earth you followed your quest.

God Our Father, Jesus too,
The Holy Spirit will welcome you.
And you will experience the awaited prize,
And see the Trinity with perfect eyes.

And when you look down at us below,
Your only thoughts will be full of glow.
Because you will know and truly feel,
What it’s like at his feet to kneel.

So go my love and do not wait,
We have said let go, we know your fate.
We will be fine, as long as we know,
When we also die on your path we’ll go.


Take care and God bless,
Mary Anne

Golf tips

About 7 years ago, I stopped playing golf with my dad. I was more into running, swimming and cycling and I was not very good at golf. Plus, I hated getting golf tips from my dad when we played. I could take them from anyone but him, I don't know why that was. When Dad got diagnosed with CholangioCarcinoma some 28 months ago, I started playing rounds of golf with him when the chances came up. I even included my son, Connor in our last few outings. On our first round after learning of his cancer, I asked dad to start giving me tips again. I took as many of those as I could. I am still no good at golf, but I am richer for the rounds played with Dad.

Sunday November 16, 2008

Hi Friends,
Well Michael has gone back to Ohio so no more pictures. Yesterday was busy day. My sister Cath and Tim and family were in from Minnesota and my brother Rick and Bonnie and son were in from Arkansas. Everyone pitched in to help put up the Christmas tree for me as well as our little Dickens village which was always Joe's' project. We aren't sure it is in the right order on the table but when Joe got up for dinner he got to see it and he really like it. He is spending all his time in the hospital bed now. I don't think he will get up today at all. The elders from the church came and anointed him and gave him communion. He has been on the leadership board for the last two years with them. Karen stayed with Joe this morning while Cas and I went to church and guess what the message was on? Heaven. Is God's timing perfect or what! Joe is more sleepy today and is starting to get his words mixed up a little. This is to be expected with all the toxins in his body. He is still joking when he is awake. He had a chance to talk with Jason and Ryan, our two youngest grandchildren (7 & 9), today and told them not to be afraid of death, that it was part of living and he would see them in heaven. We were able to talk about the songs he wants at his service with him. Everything is very open which makes it a lot easier. We alternate talking about how much Joe has meant in our lives and preparations for the wedding.
The hospice nurse comes again tomorrow. Karen goes back to Phoenix tomorrow but will be back in for Thanksgiving if not sooner. We just go day to day and count on God's strength. He is always there for us. As I say almost every time but I mean it, thanks for all your prayers. I will try and update each day. Take care and God bless. Mary Anne

Visiting Joe

Saturday November 15, 2008

Karen Kevin
Michael Mary Anne Joe Cassie

November 14, 2008

Dear Friends, 

How do you know what to write in a situation like this? I am overwhelmed with the love of people for Joe. Yesterday we had friends we met diving who drove up from Memphis (8 Hours) just to spend two hours with Joe and say good bye. My brother Rick and his wife Bonnie flew in from Arkansas and their son Ricky picked them up and brought them here yesterday. My sister Cathy and family are coming in today from Minnesota. Also our daughter Karen that is getting married in 5 weeks flew in from Phoenix yesterday and surprised Joe. We had a special time when just our kids and their spouses were in the room with us and we prayed together and just told Joe how good an example he set about loving everyone no matter their walk in life. He spends most of his time in the family room which has been rearranged to accommodate the lift chair which is like an automatic lazy boy. Other family members are in the living room or kitchen. We have the computer down here with us and albums so we have done a lot of remembering and lots of laughing at what we used to look like. Mary, the hospice nurse came yesterday and although she kind of talked Joe into the hospital bed, he sure looked more comfortable in it than the regular bed when she came to see him. Joe is getting jaundiced now and she said he will get more confused as the toxins build up. We see just a slight bit of that now. He still has his sense of humor and really made an effort to talk with people as they were here yesterday. My two in town sisters, Ron and Trish ,were also here yesterday with their husbands. Today I think we will put up some indoor Christmas decorations. Joe loves Christmas and always enjoyed just looking at the Christmas tree all decorated. Michael and I put up some outdoor lights Thursday but we won't turn them on til Thanksgiving.

A couple nights ago when I couldn't sleep I started getting verses in my head. This has happened to me several times in the last month and I feel like Jesus is preparing me for the road ahead. I wanted to share one of them with all of you to let you now I am going to be OK.

Set Your Eyes on Him

In the middle of the night when your mind turns to fright,
Set your eyes on Him.
In the middle of the night, when there's no one else in sight,
Set your eyes on Him.
For when He is in your midst, and you feel the love within,
Then the fear that Satan brings has vanished in thin air.
I know He is around me, I can feel his presence near.
And now that I have named it, I can sleep without the fear.
Oh Jesus, how I love you, and need you by my side.
Through the troubled days ahead, in your words I will abide.
For I know You love me also, and will not abandon me.
And when the trial is over, many blessing I will see.
So stay with me my Saviour, my comfort and my guide.
Until my darling Joseph, is standing at your side.

I now understand the "peace that passes all understanding" because even though I cry a lot, I have a wonderful peace inside.

Thank you so much for your prayers. They have been answered in more ways than you know and I feel the grace surround us each day. Take care and God Bless. Mary Anne

All together now.

Hi all,

This is Michael here, Joe's son. It now looks like all the kids will get together with Mom and Dad tomorrow, Friday to share a moment. Today I had each one of my children spend a minute with Grandpa. It was really special. Dad stopped and asked my youngest, Isabelle, "is this bothering you" she said "sort of". He said its alright and that everyone has to go through this and it will all be OK, it is part of living...dying. I was so touched that during a time like this he thought of her feelings and how she was doing. She told him how special he was to her and he said the same in return. As my brother Kevin and I sat and listened to Dad talk with the Hospice nurse, we could not get over how he was still such a joker. He really has handled this quite well which was his intention upon first being diagnosed. Thanks for all the support and interest in what is going on here. It is appreciated tremendously. I am posting another photo of my dad just three months ago in Canada, fishing and enjoying his grandsons and nature.

Thursday November 13, 2008

Hi Friends.
Well. hospice said today he is really declining fast which I saw in the last three days. He is very weak and can't walk to the bathroom anymore. He is becoming more short of breath with any exertion and he is running a temp. We have our son Michael and family in from Ohio now and Karen is flying in tomorrow. I have lots of support here and I got to cry with our two boys this afternoon after hospice left. My brother and sister are coming in this weekend as well as friends from Tennesee. Please pray that family gets here in time and that Joe goes peacefully. He is ready to meet his Savior. I hate to see him go but I know this is OK. Please don't send him any more emails because he doesn't check his email anymore. Take care and God bless. Mary Anne

November 8, 2008

Hi Friends,
Well we made it home without event. Joe was really a trooper. He sat in the wheel chair in San Juan for 5 hours between flights and never complained. He hardly slept except a little on the plane but he slept really good last night. This morning he had to get up earlier that usual because hospice came early. He is all signed up now and the nurse will come either Monday or Tuesday. We still aren't sure about the draining of the fluid in his belly but we will talk to the nurse about it. It is not causing him pain or difficulty breathing but it is uncomfortable. We just got the handicap sticker for the car in the mail. That will make it easier if we go somewhere. This was a very difficult week saying good bye to everyone in Bonaire. You friends have been such a support to us, we just can't thank you enough. Although this part of the journey is difficult, there is also a peace that comes with it knowing the choices are now up to Joe and he doesn't have to go through any more procedures. Cassie and I are on our way to taste the food for the wedding this afternoon. If I am away and Joe is sleeping he probably won't answer the phone but just leave a message and I will get back to you. Take care and God bless. Mary Anne

November 2, 2008

Hi Friends,
We are still in Bonaire and Joe is enjoying himself even tho he is sleeping til noon and lays on the couch all afternoon. He still likes being here and looking at the ocean. We go out to eat every other night just to get out and he can manage to sit up for a few hours and then he is really tired. The last two mornings I went diving on a boat dive before he got up and it was nice but not the same without him along taking pictures of everything he sees. We went down to the regular Friday evening Rum Punch party last night here at the resort and many staff and friends came to say helloand wish him well. It was hard for me to watch but good for him to see how many friends he has here. We did get up and dance to Ring Ting Ting, his favorite song by Moogie but only for a few minutes. It seemed like we were in slow motion but that is what we have done every Friday in Bonaire when we are here for the last twelve years.
Joe still has no pain but is very weak. The Pastor and two friends came over this afternoon and prayed with him.
We will leave here on Friday and have a long day home. I probably won’t write again til we get home unless something changes. Internet down here means carrying the computer about two blocks and working with dial up so it is fairly frustrating.
The wedding plans seem to be going along well. Many in the family are helping. It will probably get very busy when we get home but that is OK. The lack of stress here really helps us to recharge. God blesses us each day with his grace and the sunshine doesn’t hurt either. Haven’t gotten Joe on the beach yet but that isn’t important right now. Love to you all and God bless. Thanks for all your calls. Mary Anne P.S. I wrote this last night and copied it this morning but we had a wonderful surprise. Our friends Henk and Wilma who own the unit below us left a few days before we got here. When they read the blog they decided to fly back from Holland and see Joe while we were still here., You can't imagine our surprise when they walked in this morning. God is good - all the time. Joe couldn't believe they came just to see him. That's it for now.

October 26,2008

Hi Friends,

Well, we made it. It was a long day but Joe managed just fine with the wheel chairs and lots of prayer. Ed and Jayne were a big help. Walt and lyn met us at the airport with some groceries and ehlped with our luggage. We went out to eat at one of our favorites on Friday night and had pizza but is was a huge effort for Joe to sit there. We did go to the Rum puch party at Buddy's and saw Moogie but no dancing this time. Yesterday Joe came down for breakfast about 11 and T.C. came to visit and stayed for lunch. Then Joe just laid on the couch all afternoon and evening. We ate in last night. Joe really has no appetite but is eating because he knows he should.
I went to church this morning alone. Ed and Jayne are still taking their diving course. We are asking our friends here on Boniare to visit us as we probably won't get out ,much. We are hoping to get down to the beach today for a little bit.We are at peace with how things are. Whoops, I forgot to tell you. Our daughter Karen is engaged. We have know for a few weeks this was coming becasue Mark called Joe and asked him but it is official now. She will be married on December 27th at our home. The wedding will be immediate family only and then we weill have a small reception. They will honeymoon in downtown Chicago and then head back to AZ where they both live. They will move into Mark's home. We are so excited about this and have been really busy making plans.
Pleae continue your prayers that the journey will be pain free and that we can get what we need from hospice when we get home. The ascites has come back already even tho he got drained last Wednesday. Take care and God Bless. Thanks for all your emails and notes. Mary Anne

October 22, 2008

Dear Friends,
We had a really hard day yesterday. We saw Dr. Suh and after he listened to how Joe has been for the last two weeks and examined him, he said no more chemo and he suggested hospice when we return from Bonaire. I had already thought of that but it came as a shock to Joe. Our pastor Earl and his wife Pat came over last night and we talked and cried and just tried to come to grips with the fact that the fight is almost over. I think there is some relief in knowing no more treatments and doctor visits. We have had a wonderful trip on this cancer journey and it isn't over yet but we are thankful that there has been very little pain in the process and we have been able to do so much with all the time we have had. We know this is all in God's plan and I hope we can see the time Joe has left as a real gift to spend time with loved ones and get ready to see Jesus.
We still plan on going to Bonaire tomorrow with our dear friends Ed and Jayne. The travel day will be long but we have arranged for a wheel chair at the airports and if Joe can just sleep he will be happy. Please pray for us that the trip will be free of complications and that we will use the time wisely - grateful to God for all his blessings and strength to finish this journey with peace and confidence that his timing is always perfect. Take care and God Bless you all. Mary Anne

Friday October 17, 2008

Hi Friends,
Not too much going on here. We are still waiting for Joe's strength to return to a more normal level but he is not bouncing back like we hoped. He did start walking again this week. We saw the internist yesterday and he suggested Joe get lots more protein in because that will help keep the fluid from leaking out of the blood vessels into his abdomen. We still plan on going to Bonaire next Thursday for two weeks. He will get his abdomen drained next Tuesday and then see the oncologist. He is still sleeping most of the day. The kids are coming over tonight for dinner and they will help close up the pond for the winter. Ed and Jayne helped us put away the patio furniture. The fall colors are almost at their peak and they are gorgeous. The air had gotten crisp and we know winter is coming. But we are grateful for each day we have together. Our specific prayers are that Joe will regain some strength and be able to enjoy the holidays. Please know we appreciate all you have done for us by praying and letting us know you care. Take care and God Bless. Mary Anne

october 7, 2008

Just a short note. Dr. Suh agreed we should stop chemo until after Bonaire to see if Joe can get stronger for the trip. He had 4.3 litres dained from his abdomen this afternoon and looks much better and has a lot less pressure on his stomach. Think of it as a little more than 2 two liter bottles. God Bless. Mary Anne

October 5, 2008

Hi Friends,
Well Joe has not had any energy since his last chemo. It seems the last two times it has zapped everything out of him not just two days after bur for the following 10-12 days. He still has not come back after the chemo on Sept. 22ND. He slept all week with just a few outings at night for about 3 hours. He is depressed about not having any energy. He got another reaction to the Xeloda so the dose was cut again. His trial with cutting down the diuretic was not good. He gained 8 pounds is one week and it all went to his ascites. He is not back on the bigger dose but it has not helped his fluid in his abdomen. We have decided to hold off on chemo awhile and see if he can regain some strength. He had to cancel a trip to Dallas with church members for tomorrow through Wednesday because it was just too much effort for him. We still have Bonaire on the calendar for the end of the month but we will see. He has pretty much given up on diving again but he wants to go even if he can just sit and watch the ocean.
Our prayer requests are for increased strength and a lifting of the depression. The walking only lasted one week and then he got the burning feet from the Xeloda and now I'm not sure he is up to it. Thanks for all your support and prayers. The grace of God is what sustains us on this journey. We both read our scripture each day and find words that help. It has now been 26 months since diagnosis - a long journey but we have learned a lot and leaned on each other. Take care and God Bless Mary Anne

September 22, 2008

Hi Friends,
Joe got chemo today and although his white count was down his Hgb. was 10.4 and his platelets were OK. Dr. still considers him stable. Our time in Phoenix was not great as Joe was pretty much exhausted and depressed the whole time but last week was a much better week. We seem to have to get used to a roller coaster life, celebrating the good days and praying for grace to get through the hard ones. Dr. did switch his antidepressant so maybe that will help. He has lost 10 pounds since last visit and it looks like it is the edema in his feet and the ascites that has gone down so he is decreasing the diuretic a little. He felt really good today. Tomorrow he has his last golf outing with the mens group. He has missed a lot this summer but will play the scramble tomorrow and then go the final luncheon for the year. This past weekend we spent with friends who came in from out of town from Mass. and North Carolina. We have been friends for more than 30 years and it was great to see them again. We had a lot of laughs and enjoyed remembering great times we had together.
I forgot to mention Joe started walking last week again after no exercise for quite awhile. He wants to be strong enought to dive again in late October if possible. Our specific prayer requests are that the diuretic would work during the day so he can sleep and that he can regain some strength. Thanks so much for being on this journey with us. God Bless. Mary Anne

September 4, 2008

Hi Friends,
Joe is getting chemo right now but we met with the doctor and saw the cat scan ourselves and it truly does show no progression of the disease. His liver enzymes are coming down also, and his CA 19-9 which was up as high as 200 is now down to 42 (normal is 37) so labwise it looks really good. He has been having some days where he just has no energy and sleeps all day and then the next day he feels pretty normal - no queasy stomach. Who knows! Tomorrow we leave for Phoenix and spend a week with Karen. She will have the week off as she is changing jobs this month. We will also stop out and see our friends the Sullivans on Saturday. We thought we lost the pump to our pond this week and we lost the frig in the basement last Saturday - now we discovered it is the whole circuit that is out so hopefully that will get fixed this afternoon. I am at Cassie's right now to drop off the dog for the week and guess what - I locked the keys in my car for the third time in 4 months. Well our son locked them in the first time, the second time I had had a new key made but it didn't work and now I am 45 mintues from home where the spare key is sitting. Joe will drive up here after the electrician fixes our problem and then we have a small group dinner kick off for all the small groups in our church tonight. Busy day before we leave tomrrow and I just made it even worse. Do you have trouble forgiving yourself for stupid things? I'm glad God doesn't have trouble forgiving us. I should take a lesson from that I guess. Anyway have a great day - we are, in spite of the problems. God Bless. Mary Anne

Tuesday August 26, 2008

Hi Family and Friends,
Good news. Praise God for our answered prayers. Dr. Suh called tonight with the results of the cat scan and it show no progression of the disease. No new areas and no growth. We are thrilled because we thought with the ascites increasing, that the tumors were growing. We will bask in this news for awhile. We have our 44th wedding anniversary this Friday and are happy to be able to celebrate it together. Our son Michael comes to Chicago tomorrow and will take the res sportscar back tohis wife Heidi on Friday. Joe had a lot of fun with it but it ready to give it back. Thanks so much Heidi for fulfilling a dream of his. No more chemo until the 4th so hope all will be quiet on this front until then. Love to you all and God bless you. prayers work. With God, nothing is impossible. Mary Anne

August 20, 2008

Hi Friends,
Well, the fishing trip was a success. No health problems and a good time was had by all. The weather was perfect, the fishing was fair. In the first fifteen minutes of fishing Joe caught a large 8 1/2 pound bass. He said if he didn't catch another fish all trip he would be happy. They did manage to have a fish dinner one night and everyone loved it. Joe cooked breakfast every morning while Michael took the boys fishing. The cabin is rustic and the mice thought they owned it but after killing 12 of them they had a little more peace. They were glad they had mosquito nets to sleep under. They came home happy, tired and grubby. Saturday morning Joe shaved his beard off and that was a good thing. I guess telling him he looked like my Dad with it helped him make the decision not to keep it. We are home now and although he still doesn't have his queasy stomach back his ascites is really bad. He has doubles the diuretic but it hasn't done the trick. he goes to Dr. Suh tomorrow for chemo so we will see what he says about it. Thanks for all your prayers that the trip was uneventful. Even tho they didn't need the satellite phone Michael used it to tell us they were OK several times. The girls and Heidi and I had a good time in Ohio just relaxing reading and some shopping. It was the most time we have spend with Marianne and Matthew, our two oldest grandchildren,in a very long time, and it was terrific. Marianne leaves for her first year of college tomorrow. We will be home for several weeks and then out to Phoenix to visit Karen again after Labor Day. Love to you all and God Bless. Mary Anne

August 7,2008

Hi Friends,
We have had a good almost two weeks since I blogged last. Joe has had no queasiness for the past week and more energy. He had chemo yesterday but a smaller dose because his platelets were low. His ascites has returned so Dr. suh put him on Lasix instead of the mile diuretic so it will act fast but not keep him going all night and disrupt his sleep. His feel and ankle swelling has come down nicely.
Tomorrow we leave for Ohio with two grandchildren Marianne and Matthew and we go to Michael and Heidi's house for the weekend. Sunday Joe Mike Matthew and Connor head to Canada to fish from Monday til Friday. It is in Perry Sound on a remote lake with only one cabin. They will fly in in a small plane and hopefully just relax and fish to their hearts content. The lake has Northern and bass. They will take a satellite phone with them just in case but things seem pretty stable right now. We will be back home on Saturday the 16th, in time to sing in church on Sunday. Please pray for now health problems during this trip. It will be the first fishing trip with the two grandsons age 15 and 11. The summer is quickly going by but we have filled it with lots of good times and memories and lots of laughter. Joe's perennial garden has flourished and the rabbits seem to have left it for greener pastures. Today is our oldest daughter Cassie's birthday and tomorrow is Kevin's so we are going to Cassie's tonight to celebrate. Joe has been growing his beard for the last week and a half for this trip and he looks a little grubby in my eyes but he thinks he looks tough. All in the eye of the beholder I guess. Love to all of you and God Bless. Mary Anne

July 26,2008 Happy 2 year anniversary

Hi Friends,
Well here we are two years later and Joe still has quality of life and we have had a really good two years. We have traveled, spent time with family and friends, sang and worshipped in our church in in Carillon, participated in two small groups each ( we are in a small group as a couple and then we each are in one for just women or men as the case may be). All these things plus your abundant prayers have sustained us on this journey and we feel strengthened to keep on going. Last weekend Joe and I were both down but then we sang in church on Sunday and that helped a lot. Monday, Joe called the doctor about his ascites and swelling in his feet and he had an ultrsound on Wednesday. Following that, they did a paracentesis (put a needle in his abdomen) and drained out two liters of fluid. They couldn't get it all but is was a big improvement. Then Thursday, he saw Dr. Schubert, his internist, and he put him on a mild diuretic for the swelling in his feet and it should also help with the ascites. He had chemo Thursday afternoon so he has had a busy week with doctors. Next week he will be off and he loves that. The weather has been absolutely gorgeous this week and we hve spent a lot of time just sitting on the deck talking and watching the golfer and the birds. The verse "Be still and know that I am God " comes to mind often when we are out there.
tonight we are going out to dinner to celebrate, The fishing trip is planned for two weeks from now and it looks like it is a go. Again, thanks for all your support. We didn't know this journey would be this long but we are so grateful to God for the time he has given us. God Bless Mary Anne

july 17,2008

Hi Friends,
Well things continue to move along. Joe played 18 holes of golf Tuesday and although he didn't score well he was happy to be out there. We also played 9 holes yesterday in the couples league. His bilirubin went back down to normal last week when he had his chemo so the onc thought it was elevated due to his urinary tract infection. He still has the fluid in his abdomen (ascites) and now has developed swollen feet and ankles. From what I read on the cc website the two chemo products he is on are working well for some of the patients. As long as it keeps the tumors from growing we will be happy. Joe continues to have his queasy stomach but not everyday and no pain so that is a blessing. He doesn't have much stamina and some days he does nothing but sleep. This jouney gets tedious at times but then someone calls or we get a card or spend time with friends, our spirits are lifted. Tonight we played bridge with Denny and Joanne for the first time in about 10 years and it was amazing how much Joe remembered and we actually did well. It was a change from hand and foot which we still love. We can't talk as much in bridge but it was a nice evening. We brought Lucky with us and he visited their dog Piper. They didn't play but they didn't fight either so that was good.
We sing together on the worship team this Sunday at church and that is always a good time. Our kids are busy going on vacations in the next week but we will squeeze in a BBQ on Saturday before some of them leave. Hope you are all enjoying the beautiful summer weather and the time to be with your families. Take care and God Bless. Mary Anne

July 9, 2008

Hi Friends,
We just got back from a ten day trip to Ohio and New Jersey. We spent the first few days in Ohio with our son Michael, Heidi and the kids. Got to watch them in a swim meet and it was great fun. We left our dog Lucky there and traveled to the Jersey shore to see our diving friends, Bob and Diane, and we had a great four days there. Well, 4th of July was a little exciting. Joe spliked a temp of 102.8 so we called the onc. on call and she had us go to the ER in case Joe was septic again. As it turns out, he has a urinary tract infection so got IV antibiotic in the Er and sent home with oral meds. Diane stayed with us through the whole thing which took about 4 hours ( not bad for a holiday in the ER) while Bob was at home cooking our meal which we never ate. Bob is a gourmet cook and he made lunches, appetizers and meals the whole time we were there with luscious desserts while we lounged around and sat on the deck and watched the ocean. We played cards,(hand and foot) afternoon and evening and we ended up guys 5 wins, girls 4 (at least in my recollection) That is better than we did in Bonaire by a long shot so we were happy. It was very relaxing and Joe is feeling much stronger but the antibiotics are messing with his stomach. He will get chemo tomorrow is all goes well. His bilirubin is climbing a little to 3.3 so we have to watch and see if the stent is working well. We had uneventful drives all the way along except everytime I took the wheel we had torrential downpours. Of course Joe couldn't sleep with me driving in that kind of weather but we had good times and good talks. God has been so good to us to give us all this time and we sure appreciate all of it. It appears this jouney is going to have crises along the way and we just have to go with the flow and take one day at a time. We are now almost two years into the diagnosis (July 26th) and he probably had it at least a year before that. He is still planning on a short fishing trip to Canada with our son, Michael and two grandsons in August. But for now we are home for a month enjoying the flowers and the nice weather and family and friends. God bless you all. Mary Anne

June 26th, 2008

Hi Friends,
We got what we think is great news today about the cat scan. The report showed no change in the lungs, liver and spleen from three months ago. They didn't shrink but they didn't grow and if that would stay that way we would be thrilled. Joe has only had 4 Gemzar IV treatments and four cycles of Xeloda so it is early for us to see much results from that. Joe's body still doesn't like the Gemza and it plays havoc with his blood counts. His platelets were back down to 41,000 today but he got half a dose of Gemzar. We are going to aim for every two weeks and see if that works. He was able to play 18 holes of golf this week for the first time (he has only played 9 up til now) and he wans't exhausted when he was done.
We leave Saturday for a 10 day trip to Ohio to watch our grandchildren swim in a meet and visit with Mike and Heidi and then on to Barnegut Light N.J. to visit our dive friends Bob and Diane for the July 4th weekend. We will leave Lucky in Ohio with Mike's family. That should be fun. They have a great dane, a bichon and two cats. Lucky won't be bored, that's for sure. We will stop and pick him up on our way back home- at least that is what we told them! Just kidding. We are so thankful to God for all this blessed time we have together with family and friends. Thanks so much for your thoughts and prayers. We love you all and pray for you too. God Bless Mary Anne

Thursday, June 19th, 2008

Hi Friends.
Joe was able to have his IV chemo on Monday as his counts were all back up. We thought so because he was much stronger the last week. We slipped away to Michigan for three days and played golf and some cards and just relaxed. It was great. Joe had a cat scan yesterday to see what is happening inside and we will get the results next Thursday when we see the oncologist again. The weather here is beautiful in the 70's and sunny so we are enjoying the deck and Joe is enjoying the convertible every chance he gets. I took a bike ride with the Carillon bike club Tuesday and it was so nice to get out in nature. We rode along the I & M Canal in Channahon and saw lots of wildlifeand I met some new friends.
Lucky, our maltese, backslid a little in his barking when we got back to class but one minute with the trainer and I saw I wasn't being firm enough. He did fine the rest of the class. He is such a cutie, he brings a lot of joy to our household.
Our prayer requests this week is for good results from the cat scan showing that the chemo is working. Joe has no visible side effects except he is exhausted two days after the IV chemo. It does play havoc with his blood counts but they do come back up so that is a good thing. He has been on the oral Xeloda 4 different weeks now. God bless you all and enjoy this nice weather. Mary Anne

June 9, 2008

Hi Friends,
Sorry I haven't posted in awhile. Everything is fine. It seems when things are not good I get around to it easier asking for prayers. Joe was due to get chemo last Friday but his platelets were only 44,000 so no go. He will try again a week from today. The gemcitibine really knocks the heck out of his bone marrow. His hemoglobin hangs around 9+ so he gets procrit each week. I think I wrote that he had the catheter replaced with a stent and he had a slight fever the following weekend after that, so was put on antibiotics but no fever now. He did play nine holes of golf last week and that went fine. We also took a short bike ride but it all seeemed uphill to Joe. I am back to my swimming after a two week break and it feels good to be back in the water. Joe's garden is planted and so far the rabbits are leaving it alone. We just love sitting on the deck and watching the golfers and the birds and just relaxing. Hope you are all enjoying the summer that has finally come. Joe probably won't have a scan until next month to see how things are working. Our Maltese ,Lucky, stated obedience class last week and he barked through the whole first session. I was afraid we were going to get kicked out of class but he did much better today with the help of a squirt bottle from one of the assistants. It was just water but it stopped him from barking right away. Hopefully I can take him on walks now without him trying to terrrorize the dogs he passes. Anyhow, enjoy you day and God Bless . Mary Anne

May 27th, 2008

What a wonderful life!
Well friends, we are back from Phoenix and our trip was uneventful medically which is a great thing. Our river raft trip in the canyon was cancelled due to high winds and the day turned out to be pretty poor weather wise, but we still had a good time and spent a lot of the week with our daughter Karen and her boyfriend Mark. We played lots of cards, ate too much food and laughed a lot. Joe walked everyday and is much stronger for it. We left Phoenix on Saturday and got home Saturday night about 10. All our in-town kids and the Michael Coburns from Ohio were there. We knew they were coming in for a short weekend with us. What we didn't know was what they were bringing. As some of you know Heidi was diagnosed with Carcinoid cancer last November and so Mike decided to buy her the sports car she has wanted for awhile. It is a red Honda L2000 which may mean something to some of you. Well, the surprise was, they gave it to Joe to drive for the summer. Those of you who know Joe, know that he has always loved sports cars but never had one. They had spotlights on it in the garage and a big blue bow when they opened the garage doors. Joe was almost speechless - not quite! He had the biggest smile on his face this weekend that we have seen in a long time. Of course, everyone had to have a ride in it and the weather cooperated beautifully for plenty of rides (at $4.00 a gallon). Joe played golf with our two sons and grandson on Sunday (9 holes) and he wasn't exhausted when he came home like he was 10 days ago. I think the walking is really helping strengthen him.
Today he went for an ERCP to replace the biliary catheter with a metal stent (which should last 6-8 months). He no longer has a tube sticking out of his abdomen. The procedure went very well. They did find a small ulcer which they biopsied so he will start on a med to reduce the acid in his stomach. He is resting today but is pretty comfortable except for a bit of a sore throat which is how they gained access to the area. We went back to Dr. Parsons at Northwest Community on the recommendation of our oncologist. Everyone seems to know he is the best in the area but he is a very humble man. That's it for now. Hopefully we can post a picture of Heidi and Joe in front of the car when we get it. We know it was a sacrifice for Heidi to give it up after just getting it but she was very gracious about it and we are so thankful for the thoughtfulness of all our kids. We feel blessed that we can keep building memories with the kids and our friends. We did have lunch with our old friends the Presleys in Phoenix. They drove 4 hours one way just to see us and we surely appreciated the effort.
Joe will have his IV chemo again on Thursday. He has had two weeks of the oral with no side effects - another answer to prayer. Take care and God bless. Mary Anne

We are in Phoenix!

Hi Friends,
Well we made it to Phoenix to visit our daughter Karen for a week. the doctor visit yesterday was good. Joe's counts all went up, well the white and the Hgb. The platelets dropped a little more but the doctor said they would start to go up now because the treatment was 10 days ago. good news that his bilirubin is now 1.2, back in the normal range. He is still weak but other than that we are happy with the news. We have made an appointment with the GI guy at Northwest to put a stent in where his biliary catheter is on Tuesday May27th. Then he won't have an opening to the outside and less chance of infection. He also had his blood cultures repeated to make sure the sepsis was gone and they grew nothing so we are in the clear there. I guess I shouldn't say "we" but we re definitely in this journey together.
We had a smooth flight out arriving a little early and we have just had a good nap waiting for Karen to get home from work. We are going to our favorite Italian restaurant tonight, Baci's, which used to be in Plainfield, where we live, and moved to AZ. Karen's boyfriend Mark will be joining us (and for most of the week). We plan to drive to the Grand Canyon on Tuesday and take a 13 hour tour which includes a 5-7 mile float trip down the Colorado (?) River but we don't have to paddle so that is a good thing. Karen and Mark will join us on this also so we will get to spend some quality time with them. We planned the Grand Canyon trip thinking Karen had to work and then she decided to take the week off. We hope to visit our friends the Sullivans on Monday and see our friends the Presleys on Friday. They both used to live in Carillon with us and moved west a few years back. A few weeks ago I wasn't sure if we would be able to make this trip but God has really blessed us with recovery. We couldn't do it without all your prayers. Thanks so much for caring for us and about us. Thanks Ed for driving us to the airport this morning,. That made it much easier (and cheaper). Take care and God bless, Mary Anne

May 12th, 2008

Well, today was supposed to be Joe's second Gemzar IV of chemo but his blood counts dropped way too low so he won't have any til we come back from Phoenix. His hemoglobin is 9, his white count is 1.2 and his platelets are only 68,000. So he got Procrit which helps build the red blood cells and Nulastin which helps build the white blood cells and the doctor will check him again on Thursday before we leave for Phoenix on Friday. Each time we see him we like him more. Joe has walked everyday and really feels stronger. The oncologist said that his patients who exercise have way less side effects than those who lay around. Joe told him his own goal of walk/run three miles in 8 weeks and he agreed with it.
Joe will play golf tomorrow with his golf league for the first time. The weather should be warmer and the sun always helps Joe feel better. We are looking forward to Phoenix. He finishes his first week of Xeloda tomorrow and will be off that for a week so we don't expect any more changes except good before we go away. Thanks for being there for us. It is nice to see and visit neighbors as we walk the neighborhood. Lucky,our Maltese, is learning some manners as we meet and greet people on the street but he is not so good with other dogs. He is going to obedience school next month so maybe that will help. He is a joy to have around and he doesn't run when we have him off the leash which is so great.
We are still trying to set up an appointment with Dr. Parsons to put a stent in where the catheter is in his bile duct but he wants to review the records from the hospitalization first. Will try to update before we leave for Phoenix. God Bless Mary Anne

May 7, 2008

Hi Friends,
Well thing are improving. Joe started chemo on Monday with Gemcitibine which he will get for two or three Mondays and then a week off. He started oral chemo with Xeloda yesterday and will be on that, one week on, one week off. So far no side effects but is it early. His bilirubin came down to 2 which is the lowest it has been since he was jaundiced. His blood counts are all good although a little low. His platelets came up to 143,000 which is great. Yesterday was a beautiful day and we walked outside for a half hour. That was a big effort for Joe but he definitely feels he is getting stronger. He has had work started on planting his garden and he is really looking forward to that happening. His favorite thing to do is sit on the deck and look out at the pond, the golfers, the gardens. It is a bonus if our neighbors Ed and Jayne are around and they stop over to chat. He even went all day yesterday with no nap!
Please pray for shrinkage of the tumors and that soon he can get rid of the catheter in his bile duct and switch to an internal stent. People with cc have seen some good results with this chemo combination and we are hoping Joe will get a good response with few side effects. Take care and God Bless. Mary Anne

May 2, 2008

Hi Friends,
Joe is doing much better this week. He has been walking some each day outside and he has lost 13 pounds of fluid naturally since he came home from the hospital. He probably has about 5 more pounds. If all goes well and the counts are good, he will start chemo on Monday. He is planning on having his gardens planted in the next ten days and he is really looking forward to that. He loves to sit on the deck and watch the golfers and see his flowers. We had friends from the International House of Prayer in Kansas City stop by Wednesday night and they stayed over and prayed with Joe and I on Thursday. What a great way to start the day. Thanks for all the wonderful get well cards and birthday cards. Your thoughts and prayers mean so much to us. I went to the support group for people with metastatic cancer and their caregivers. I learn something new each time I go and I find it really helpful. We have a quiet weekend ahead of us and that is fine. Take care and God Bless. Mary Anne

visit with oncologist

Hi Friends,
We saw Dr. Suh, the oncologist this afternoon and he seemed unsurprised at how weak Joe was and that he was retaining fluid in his abdomen. He said this was all a result of the infection and all the IV's he got in the hospital. He was happy with the blood counts. His platelets are back to 59 from 38 and his HGB is 10.8. Hi bilirubin is still a little high at 3.8 but he thinks that is due to the infection. He wants to start chemo again next Monday if Joe continues to improve. He wants him to exercise every day to sweat the toxins out of his body. So, things are going the right way and our goal is to be able to get to Phoenix the middle of May for a week to visit Karen. We are hoping for warm air and sunshine so he can walk outside but we do have a workout area in the clubhouse. The IV antibiotics finish tomorrow and he has already started on the oral. Life will then look more normal without the medical equipment in the bedroom.
Love to you all. Thanks for all your emails and comments. God Bless Mary Anne

Happy Birthday Joe

Hi Friends,
Today is Joe's 68th birthday and he is coming home this morning. The home care nurse will be here to show me how to do the IV antibiotics for the next three days and then he will switch to oral. His spirits are great and that has to be all the prayers. He walked the hall of the hospital several times yesterday and even did two flights of stairs with P.T. His hemoglobin is up to 10 and his white count is back to normal. He got more platelets yesterday and they will do another blood count before he leaves.
We will be so happy to have him home. The "we" being Lucky and me. The kids will come over for a short visit this afternoon and bring dinner. This was a rough week and we did lots of praying at the bedside. We felt supported by all your prayers and can't thank you enough for being our friends. For the first few days, I again ask for your to use our cell phones. That way if Joe is sleeping the phone won't wake him. He is one of those people who can't just let it ring. Hugs and kisses to all of your - our devoted friends. God Bless Mary Anne

Wednesday April 23, 2008

Praise God for some good news! The colonoscopy was clear - showed nothing which was a relief. Our fear was that there was tumor causing the internal bleeding. This is not the case. He won't have any more tests at this point. It appears the bleeding has stopped because his blood count is stable. He got platelets today and he will get shots for his low white blood count daily. He will be on IV antibiotics for two more weeks, but will be able to go home sooner than that when he is stable. This was a gram negative bacillus which is a serious blood infection. But he appears to be out of the woods. Thanks so much for all your prayers and calls. Joe looks and sounds better today than he has since he got here. He is really looking forward to his first meal in three days - he had to fast because of various tests. We'll continue to keep you posted.

Tuesday, April 22, 2008

Joe had an endoscopy this morning and it showed no ulcer. Colonoscopy scheduled for tomorrow. He does have a blood infection, probably due to the catheter in the bile duct. Please pray for a spirit of hope and courage. He is still in intensive care so we'd like to limit visitors to family only to give him a chance to rest. Thanks for your prayers.

April 21, 2008

Hi - this is Karen writing for my mom. Dad had his first chemo last Thursday. He didn't have any nausea from it, but by Saturday he was feeling pretty weak. Sunday night he spiked a fever of 102 and had indications of internal bleeding so they went to the emergency room. His hemoglobin was 7 so they gave him two units of blood and admitted him to intensive care. This morning his hemoglobin was up to 9.9. His chest xray and urine were clear of infection so they think the temp might be caused by an infection of the catheter in his bile duct. He will probably be moved out of intensive care today. He is on 3 IV antibiotics to take care of the infection. We will keep you updated but please pray with us for strength and healing to get through this.

Karen

April 15, 2008

Hi Friends,
We saw Dr. Seigel today and Joe has the go ahead to start Gemzar on Thursday. He will get it IV on Day 1 and Day 8 and then be off for 13 days. We tried to set this up to squeeze in our trip to Phoenix to see Karen in May and Joe's fishing trip with Michael and two of his grandsons, Matthew and Connor. He will start the oral Xeloda after the first cycle of Gemzar. His bilirubin came down to 2.8 yesterday.
So our prayer concerns now are that the chemo works in shrinking the tumors, and that the side effects are minimal. They will watch his blood counts closely.
Tomorrow is supposed to be almost 70 so he is going to try and play golf for the first time this year. We're now 21 months since diagnosis and 31 months since the symptoms started so we know we have been truly blessed with all this good quality time. Take care and God bless. Mary Anne

April 11, 2008

Hi Friends,
Just talked with the oncologist on the phone and he was very happy to hear Joe's bilirubin dropped to 3.2 this week. He wants to wait one more week before starting chemo to see if it will get closer to 1 which is normal. We see him next Tuesday and will talk more about it. Joe is feeling really good and feels his strength coming back as his levels drop. We are just happy for this respite in this disease. Looking forward to a quiet weekend. Take care and God bless. Mary Anne

April 6, 2008

Well, we just finished a family weekend with all our children and grandchildren in town. There were 18 of us and it was noisy but fun. Our daughter Cassie planned many of the activities for Saturday and we were never bored. We did manage to take a family picture. We laughed a lot and Joe managed to stay up the whole day except for one short nap.
We talked to the oncologist Friday and the results of the cat scan showed there are no new sites. The tumors in the liver and lungs are still there and the one big one in the liver is quite large (12 cm x12cm x 6 cm) but that is not much change from the last time. Joe has no pain now and is working hard to gain back some strength so he can pay golf in a month. He did two big days of outside house chores getting ready for the kids this weekend. He cleaned our fish pond and set up the patio and believe it or not, we were able to sit on it Saturday with a temp of about 62. It was great to be outside even for just a bit. We took lots of pictures and laughed a lot playing couples newly-wed type games and fought a lot playing family feud from a DVD. All in all it was a memorable weekend. Cassie had each of the grandchildren write down what they liked about Grandpa and me and she read them at dinner. We only get a chance to have everyone together about once or twice a year and this was very special. Karen also had her boyfriend Mark with her this weekend and if the family picture gets on here, he is the tallest one at 6'5".
Joe will have another blood test tomorrow. Last week's bilirubin only went down to 4.2 and the doctor would like it below 3 before he starts any chemo but if it levels off or starts going up he may reconsider. As I said before normal is 1 so he is getting there. His whites of his eyes are finally getting back to white.
We are grateful for all the good times this weekend and for all the blessings God has given us in our family. Our parents gave us good models for family traditions and we're happy to be able to continue them. God bless you all and have a wonderful week. Mary Anne

Going in a new direction

Hi Family and Friends,
Well, the new oncologist we were going to see next week had a cancellation yesterday so we got in yesterday afternoon. He is at Northwest Community in Arlington Heights where Joe had his other procedures done. Dr. Seigel was very thorough, totally understood Joe doing alternative treatment and made suggestions about what we could do now. He also ordered a cat scan to see the progress of the lung metastases which don't show up well in an MRI MRCP which was done a month ago. He said Joe could not do any chemotherapy until the bilirubin got below 5. Then he could start Xeloda orally and Gemcitibine IV. He thought Joe could tolerate these two drugs without having many side effects. He did explain the possible side effects and they didin't seem too bad. He said no chemoembolization because of the bilirubin - too much danger of injuring good liver tissue along with the bad. Because our out of pocket medical expenses were astronomical last year Joe is going to do this regimen and see if it will halt the tumors and hopefully shrink them. He hates to leave Dr. Ayer but it seems the most prudent thing to do at this time. We ask your prayers for good results from this tretment. It probably won't start for a few weeks or until we get the results of the cat scan. By the way his bilirubin was down to 4.8 yesterday so it is responding well to the catheter. The weather is getting warmer and we have taken Lucky out to run on the golf course before the golfers get started and it is good for Joe to get out. He is definitely stronger each week. We both went without naps yesterday due to the doctor appointment and we survived! So that is where we are. Will write again when we get news of the cat scan. Thanks so much for caring about us and caring for us. We pray for all you who are praying for us that you will be blessed by your caring. God bless. Mary Anne

Happy Easter - Christ is Risen

Hi Friends and Family,
We have had a fairly quiet week. We did see the internist on Wednesday and Joe does not have a urine infection but rather prostate problems which he gave him meds for. He has been having trouble sleeping because he has pain when he lays down flat so we are trying some extra pillows to see if that helps. The weather has been nice enough a few days this week that we took Lucky out on the golf course to run before the golfers get started. Good for Lucky and good for Joe to be out. We are off to our daughter Cassies this afternoon for a family dinner and traditional Easter Egg hunt for the grandkids (indoors of course). Hope you all have a beautiful and blessed day and enjoy your families. God Bless Mary Anne

going in the right direction

Hi Friends,
The results of the blood work came back today the the bilirubin is down to 7.4 (normal is 1) and his hemoglobin went up a point to 10 so that is good. The other levels stayed about the same. We go to Dr. Schubert tomorrow. He is still fighting a urine infection but is on antibiotics for that. His strength is coming back slowly. We are looking forward to Easter at Cassie's. We enjoyed watching Marianne, our grandchild, in the choral concert lat Saturday but we couldn't stay long enought to see Matthew. He is only a freshman so we have time for him. Marianne had a solo and did a great job. Our friends Ed and Jayne got back from Bonaire so it is good to have our neighbors back. I did find out that Northwest hospital does do chemoembolization if we choose to go that route and the same radiologist that did Joe's last procedure is the one who does it so that would give us a comfort level. That will be down the road after we try IPT when the bilirubin gets lower. For now Joe is just doing IV Vitamin C. Please keep praying that we can hold off this beast awhile longer. God Bless Mary Anne

Bilirubin going down

Hi Friends and Family,
Got the results of the bloodwork today and the bilirubin is down to 9. Normal is 1 or below so that is a big improvement from 20 where it was two weeks ago. We are going in the right direction. His hemoglobin is also dropping which is not good but the doctor feels that is just part of the liver not functioning well. We see the internist again next Wednesday and will have new bloodwork by then. Joe is definitely getting stronger, down to just one nap a day. We will go see our grandskids sing in choirs tomorrow night which will be fun. All is on the upswing so prayers are being answered. Our kids are all coming in in three weeks so it will be fun to be together again. It is not easy to arrange with one in Ohio , one in Az., and two here but if we can do it once or twice a year we think that is great. Take care and God Bless Mary Anne

March 10, 2008
Hi Friends,
We had a very quiet weekend. Our pastor and his wife Earl and Pat stopped over Friday night on their way home from Florida and it was great to see them. They brought Joe's favorite food - pizza and he did a fairly good job on it. Not his usual but it tasted good to him. Saturday night our friends Ben and Marilyn came over and Joe laid on the couch for their visit,but at least he could stay awake. Sunday he geared up and got to church and it was good for him and good for our friends to see him. Today he went for some more Vitamin C IV. He seems to be stronger today and he is gaining a little weight which is good. We are just taking it day by day waiting for the blood tests to come down into normal. Next blood test Wednesday with results on Thursday. Thanks to our friends Ed and Jayne who are still in Boniare but call everyday to see how Joe is doing. We couldn't walk this journey without all of you. Please pray for good results on this next blood test so Joe can start treatment soon. Take care and God bless. Mary Anne

March 6, Thursday
Got the results of the blood work from yesterday and the bilirubin went from 20 to 16 which is a good thing. Normal is 1 so we have a ways to go. The other liver function tests are also considerable down. The Alk Phos which was 738 is now in the 400's and the AST and ALt are in the 60-80 range from the low 200's. So for those of you with cc you know what this means, For those of you without this knowlegdge, it means the liver is functioning better now that the catheter is in place. Joe has no pain today and he slept very well last night. The reglan seems to help him move the food through his stomach better so all in all, things are improving. He will go to Dr. Ayer tomorrow and get some IV Vitamin C and some other good stuff. Dr. Ayer talked to Dr. Lodi in Az and they conferred about what was good. I was able to go swimming this morning which felt really good. Now that things have settled down, I won't blog until after the next blood test next week. We are spending a quiet weekend at home. We joined blockbuster on line again so they send us movies. Agin, thanks for your prayers and support. God Bless Mary Anne

a better day today

Hi Friends,
Today is March 5th and Joe is finally feeling a little stronger. He spiked a temp last night and had to get an antibiotic which he started last night. We went to his IPT doctor this morning and he got his port flushed. This afternoon we went to his internist and got checked out and got Reglan for his stomach to help it empty so his food sits better. He is not running a temp today. As soon as his bilirubin gets down he will start IPT again which hopefully will shrink the tumors and they won't be obstructing his ducts. His jaundice is improving slowly. The doctor said it takes about a week. I am so thankful for just this little improvement. He did go to bible study this morning just for a bit and the guys prayed with him. That is his first outing except to the doctor in a week. We are in God's hands and he is doing a good job. Thank you God. Take care Mary Anne

Procedure a success - Praise God

Today is tuesday the 4th of March. Joe had his drain put in today without problems so now he doesn't have a bag on the outside. He still has a catheter from his bile duct to the outside but it will be used only if they need to access it. I will flush it twice a day to keep it open. There is a risk of infection with this but they feel it is worth it to be able to get at the bile duct quickly. He is half dozing now. He had terrible chills when we got home. We are both going to rest now and will see Dr. Schubert's N.P. tomorrow for follow up. Three times at the hospital in one week is enough. Thanks for all your prayers. If you call, please use my cell phone so it doesn't wake Joe at least between 1-5 P.M. Thanks for understanding. Take care and God bless. Mary Anne

One down, one to go

February 29,2008
We just arrived home from the hospital. Joe had a drain put into the bile duct in the left lobe of his liver with an external catheter to a drainage bag. They were unable to get all the way to the intestine today due to inflammation of the duct but they feel that by Tuesday they can go in again and complete the drain down to the intestine. He is uncomfortable but not in pain. We were very impressed with the staff at Northwest. They were very caring and informative of what was going to happen. It was smooth sailing driving up and back. Tuesday's procedure will be at 9 so it will be a little earlier.
We will just sit back and enjoy each others company tonight. Days like today are stressful when you are not sure of the outcome so the tension of the day is over. Thanks again for all your prayers. We will keep you updated as we know more. Take care and God Bless Mary Anne

Procedure tomorrow

Thursday February 28th,2008
Frist of all, I flew home from Boniare yesterday. I left Bonaire at 7 in the morning and got home about 10 last night. It was a long trip but we did fine, Lucky and me. Kevin picked me up from the airport and then stayed overnight with us.
This morning, we went to the hospital for pretesting stuff for tomorrow. The procedure tomorrow is called a percutaneous trranshepatic something or other. They will go in through the skin and insert a drain with an external bag which will be temporary til the billirubin goes down and then maybe later place a stent in. We don't know if he will be in overnight or not but we are prepared. He is very weak but not in any pain and I am so glad I am home to help him. His bililrubin is up to 20 now so he needs some relief. We ask for prayers that this procedure goes better than Monday and that it will get rid of the jaundice. We thank you for all the support you have given us with phone calls etc. The grace from your prayers buoy us up each day. We are looking at one day at a time and know God is walking with us in this journey. God bless all of you. Mary Anne

Tuesday February 26, 2008

Hi Friends,
Well the procedure yesterday to put in stents was only partially successful. They got two stents in the right side but the left lobe has a twisted duct that they couldn't reach through the stomach. There is only a 20% chance that this will solve the problem. He is tentatively scheduled to have a different procedure on Friday where they will go in percutaneously to try and reach it. Of course we were disappointed and discouraged but we haven't given up. Cassie is being a great nurse to Joe and forcing fluids to try and rid the body of the bile. We have to take it day by day in what the plans are to return to Bonaire but it doesn't look possible for next Tuesday. As Joe said this proceure only takes care of the symptom. He still needs treatment to reduce the tumor that is pressing on the bile ducts.
So I keep trying to bring to mind verses from scripture that will sustain us and give us encouragement. Phillipians 4 -13 has always been my favorite since my Mom shared it with me many years go. I can do all thngs through him who gives me strength. Also Be still and know that I am God. We need to rest in his grace and pray for success on Friday. Thank you for all your prayers and support. I wish I could write you all individually but I pay by the minute down here. Take care and God Bless Maryanne

Stent scheduled for Monday at @ P.M.

Talked to Joe last night and he is scheduled for a stent to be placed in his bile duct on Monday at 2 P.M. at Northwest Memorial hospital by Dr. Parsons. He has done 1000 of them and rarely has to do an external bag. So keep praying that all goes smoothly. Cassie will take him and stay overnight with him Monday night.
Charles, Joe still has the same cell phone but the home phone is not turned on. If he is sleeping he doesn't have the cell near him THe number is 630 561 6289 - same as always. It is hard for me to be away from him now but he wants me to stay here - I think so he is sure to come back. Anyway his cold is better and he is keeping busy seeing friends and reaching out to other people who have problems at home. He is really a trooper about this and we feel God's grace every day. I am not doing much except diving and eating and sleeping. Lucky is a great companion for me. He had a little surgery to remove a cyst under his eye but is back to his old perky self. Lucky is our little Maltese for those of you that aren't up to date. Thanks for all your prayers and concern. I will write after the procedure to let you know. It may not be til Tuesday because my internet place closes before I will have the results. God bless Mary Anne

Friday Results of MRI

Hi Friends and family,
First of all, to the cc people who answered my questions about jaundice and stents, thank you. I can't seem to log into the cholangio site right now. Joe talked to Dr. Schubert last night late and he said Joe definitely has a blockage in his bile duct. The tumors have grown and are blocking it. He is going to get hold of a GI guy from Northwest hospital maybe in Park Ridge and see if he can schedule a stent ASAP. Joe's bilirubin is 10 normal is 1 or below. Hi liver tests are also high. Joe has a small amount of liver pain on and off but the last two days he has not been very queasy. He has a cold which is keeping him from sleeping well. And he has no wife at home to nag him about what to take when - don't know if that is good or bad. He definitety won't be coming back to Bonaire on Tuesday and after that plans are uncertain. They can't do anything til they get the bilirubin down. Sorry I can't write all of you individually but please know we appreciate your support and prayers. Joe only has his cell phone on at home and he is sleeping a lot. Email would probably be the best way to reach him unless you have his cell phone number. Family and neighbors are feeding him so that part is handled. He has done all his little chores he had on his list except getting the computer fixed which is really bugging him. He has his old computer at home so can use skype from there to keep in touch. Thanks Rick and Trish for your calls to him.. He really appreciated your care and concern. I will update this as often as I have new info. Please continue to pray. God Bless. Mary Anne

Time for more tests

Hi Friends and Family,
Well, we have had some changes since our last blog. Joe has now developed jaundice as evidenced by the yellow in his eyes. His queasy stomach is back. He flies to Chicago tomorrow and will have an MRI and an MRCP to look at his bile ducts and see if there is blockage or what is going on. He is sleeping a lot due to this condition. We will hold off on the IPT until we find out what is going on. Please keep us in your prayers and we will let you know the restuls when we get them which may not be until next Monday. Love to you all God Bless Mary anne

Wonderful Days

The days in Bonaire are almost all alike. Sunny with some white fluffy clouds. We do get a little rain but with a constant 15 mph wind it blows over very quickly. Temps are mostly in the 82 - 84 range. Just delightfuil weather. Sooooo much better than what I have been seeing in Chicago....I think last week they got 10" of snow....yuk!

We have managed to train Lucky not to bark any more when we leave. We think he was suffering from seperation anxiety. He does just fine now.

I have not felt as well for the last week. My stomach is back toi being queasy and I have slight pain on and off. The problem, of course, is that any paion that I have causes me a great deal of mental stress. The pain of and by itself is pretty much a nothing.

We are diving quite a bit, mostly with our good friends Bob and Diane who we met down here three or four years ago. They also come down for about three months and are great to be with. People who own another unit at Buddy Dive came in yesterday and we have not seen them in a year. He told me in his broken english that he has been peraying for me daily. I broke into tears when he said that. People are so great. My heart just melts when people tell me that.

I go back to Chicago on the 19th for three treatments and then fly back to Bonaire. I hope they take away this pain. To all of you who atre praying for me thank you so much from the bottom of my heart.

Joe

Great Time!!!

I was surprised whenI looked at the date of the last blog. January 12....WOW! We are enjoying the nice weather here and the herbs Dr. Gwo gave me seem to be working as my queasyness is gone or almost gone most of the time. One of the reasons that we have not written in a while is that we have been having problems with our computer. Yesterday we took it to an authorized Dell service center on the island and after a lot of testing he determined that the motherboard is shot. He cannot fix it as we do not have an international guarantee but he did call Dell, explained the problem and I have a case number so that when I go home I can call Dell and get it taken care of in a day ot two.

We have been diving about two dives a day and the last dive we made at Margate Bay, we had a pod of Dolphins swim by us. Verycool. We are going to go back there and look for them again..Last year at Margate Bay we saw the Dolphins twice and at about the same time.

We have been attending theSmall Group that we started last year and it is going well. Last week there were 17 there. Wonderful!!!. We signed up at Chat n Browse for computer time so we should be able to do a better job of keeping up with what is going on . Thanks for all your prayers....I'm sure it's the reason that I am still here.

JOE

Bonaire

We arrived on Bonaire on Wednesday evening and some friends from the church greeted us and another couple, also from the chuirch, picked us up at the airport. Very nice! We almost did not make the plane however. When we checked in at the reservations desk we were asked for Lucky's health certificate and his rabies certificate. We had the health certificate and the Vet had written on the bottom the date of rabies vaccination and the tag number. This was not good enough for this agent as it says that the passenger must have the rabies "certificate". I tried to point out that it was noted on the health certificate but to no avail. They were not going to let us on the plane. It is about 6:50 at this point and Mary Anne called the vet's office and the answering service said that although the vet would not be in until 8:00 a.m., someone would be in the office at 7:00. At seven, Mary Anne called back and got Penny, a woman we know, to fax the certificate to American Airlines. We made it!!! What a hassle that would have been to have to delay a day to get that certificate. We had never been asked for it in the past.

Last Friday, I went to see Dr. Gwo, a Chinese herbalist. Dr. Ayre, from whom I am getting the IPT treatments, referred me to him because of my often-present queasy stomach. I filled out the five page questionaire and went in to see the Doctor. He had me stick out my tongue, took my pulse for a minute on each wrist and looked at my nail beds.....that's it. I told him of my diagnosis and queasy stomach. He asked who prescribed all the supplements that I was taking. I told him Dr. Lodi in Phoenix. He asked me what Dr. Ayre had said about them. I told him that Dr. Ayre said they couldn't hurt, to which Dr. Gwo said, "Dr Ayre, too kind, I more direct, waste of money". I then proceeded to buy $400.00 dollars worth of herbs from him which he obviously did not think was a wate of money. I am, however, feeling better. My queasyness is almost gone. He gave me two herbs for my liver and two for my stomach.

Because of some work being done in our condo, we will not be able to move in there until Thursday. They are totally redoing the two full baths upstairs. There was a water leak and they had to tear the baths up to get at the pipes so they are redoing everything. Should be very nice.

It is good to be back here. We have many friends here in addition to the many who come down and stay at the resort.

Happy New Year!

Ed & Jayne our next door neighbors came over for New Years Eve. We had cheese and meat fondue and they sat down to watch a dvd (Amazing Grace). About 9:00 p.m. Mary Anne woke me up to tell me that Ed and Jayne were going home. They were tired and obviously so was I. However, after they left I did stay up til about 11:30....those little naps can do you a world of good.

I had my last IPT treatment today at least for a while as we had for Bonaire next Wednesday. I will fly back alone on Feb 19th and have three treatments on the 20th, 22nd and the 25th and then fly back to Bonaire on the 26th for another five weeks.

We are busy packing and weighing suitcases. More difficult for us when the weight limit dropped from seventy pounds to fifty pounds. We always look like the Clampets when we travel. Four large suit cases, two carry ons, a dog and a computer plus a back pack....WOW! We are hopeful that Lucky, our new addition will be as good a traveler as Jake was. He would not make a sound in the five hour flight from Chicago to San Juan. Amazing!

Have a healthy and happy New Year!

Joe

Great Christmas!

Hard to believe that it has been over a week since I last posted on the blog. The Christmas holidays seemed to fly by. Karen flew in from Phoenix although she was delayed with some fog in Chicago. I have never seen O'Hare soooo crowded. We finally got home at 2:00 A.M. We celebrated our Christmas with the family on Dec. 23rd. with everyone together but Michael Coburns who had a Christmas at home for the first time in years. We had a glorious meal headlined with beef tenderloin and a crown pork roast. Fourteen of us gathered at the table. We exchanged presents earlier in the afternoon. I led worship in the morning and sang on the worship team on Christmas Eve. On Christmas we went to Kevin and Tracy's for dinner which was great. Unfortunately, we had to take Karen back to the airport on Christmas day as she had to work the next day.

We are now preparing for New Years. I continue to feel the same with only a queasy stomach. Mighty good! Praise God. We leave for Bonaire on January 9th and we are excited to head down there again. In so many ways it is like home for us.

We wish each of you a Happy and Healthy New Year! May God bless each of you abundantly.

Joe

Another Pet CT

Last week, I had another Pet CT. It seems that with each one, I become more nervous regarding the outcome. Our primary physician, Dr. Schubert called me on Sunday to let me know that although there was small growth in one of the lung tumors, he would still classify the disease as stable. I certainly thought that this was good news. On Wednesday, we went downtown to see Dr. Mulcahy at Chicago Northwestern. Overall, she just indicated that my tumors seemed to be very slow growing and that I was on the far end of the bell curve. We think that she may have just written us off as we are doing alternative therapy which she refuses attest to its effectiveness. Oh well! I'm not sure it is worthwhile going to see her again.

Last Saturday on the 15th we flew to Cleveland to spend a long weekend with Michael, Heidi and the children. We had Christmas on Sunday morning and Mary Anne, Michael and Heidi went to her oncologist on Monday. I stayed home with the kids as it was a snow day with which they were delighted. Her news was all good with no growth of her tumors. All her blood work was also normal and he didn't think they would do more blood work for several months and another MRI for maybe six months....all good news.

Tonight our daughter Karen flies in from Phoenix and will be with us for Christmas. We will have our Christmas on the 23rd as Kirk and some of the children are busy with church on Christmas eve. On Christmas day we will all head to Kevin and Tracy's for dinner. Mike and family will spend their first Christmas at home in some years. Unfortunately, Karen will have to fly back on Christmas day but we are so grateful that she will be in for a few days, We just don't get to see her as much as we would like.

Immediately after Christmas we will start getting ready to go to Bonaire as we leave on January 9th. We are so blessed to be able to spend time there!

We wish all of you a most blessed and joyous Christmas!

Joe

New Addition

As some of you may remember, last April we had to have our thirteen year old Maltese, Jake, put down. It was a very sad moment. As you dog owners know, they become like members of the family. Both Mary Anne and I have missed Jake a great deal. Mary Anne has been looking on "Pet Finders" and has showed me several dogs. I asked her if she was planning on getting another dog and when she said no I asked her not to show me anymore pitures of dogs.
We have been dog sitting for a friend who has the cutest, submissive little white dog. As great as he is, just dog sitting did not seem to do it for us and so Mary Anne called a friend who works at the Vet we went to, who also happens to be a show judge and asked her about finding us a small white dog...maybe a Maltese. Three hours later she called back to say that a friend of hers who runs the Animal Shelter in Joliet had a one year old male Maltese. He was small and very submissive.
Mary Anne went out that afternoon and got him. We found out that if we had called one day later he would have been put down. He is the cutest thing and very submissive. We felt very lucky to get him and him to be lucky also as he wouldn't have been here one day later.....
so naturally we decided to name him "Lucky"!
He is nothing like Jake. First of all he doesn't growl at me when I come into the bedroom and he is much more affectionate. He has adjusted very easily and already seems very much at home.

On another note, I have another Pet CT on Thursday the 13th and we have an appointment with Dr. Mulcahy at Chicago Northwestern on the 19th. We are hoping that the report will not only be favorable but also far more definitive.

In four weeks we will be leaving for Bonaire. We are so blessed to be able to get out of the winter for a while. We sure love the island and all the people who we know who either live on the island or come there while we are there.

May God bless each of you abundantly at this marvelous time of the year!

Joe

Christmas is Coming!

Last week, we were able to get the Christmas tree up and all the decorations in the house. I had put up the outside lights when the weather was much warmer. We turned on the outside lights on Thanksgiving evening. Like so many, I love Christmas. What a special event is the birth of our savior. I am enjoying each day and thank God for them. I am still feeling well and if anything my queasyness is less than it had been.
Yesterday I went to the Bears football game. It rained continually until we were in Soldier Field. Then the rain did stop and it didn't rain again. The temps started dropping and the wind picked up but I had soooo many clothes on that I was plenty warm. If I had put on many more clothes, I would not have been able to move. We had to walk a long, long walk from where we parked to the stadium and that was fine for me but Kevin (our son) had invited me and he brought his two boys, Jason 8, and Ryan 6. Jason did fine but Ryan had to be carried most of the way. I think they enjoyed the game....actually they enjoyed all the junk to eat that Kevin bought them. To the surprise of very few, the Bears blew a nine point lead in the fourth quarter and lost. It was a very nice outing. I'm glad Kevin asked me to go although at first I said I would rather stay at home and watch it in High Definition where the temp is always 72 degrees.

It is about 25 degrees here today....very cold but sunshinny. Good day for staying inside!

May God bless each of you.

Joe

Happy Thanksgiving

Dear Family and Friends,
Last year we thought it might be our last Thanksgiving together. Now here we are year later and Joe isn't feeling any worse than last year. What a blessing! We are gathered at Kev and Tracy's,(our youngest son) house in Bloomingdale and we have had a very relaxed day. We actually have three dogs with us and they are all dong well together.
Today brings to mind the verse from Jeremiah - For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.
Joe and I had a nice dinner out last night and talked about why he was still here and feeling well. We decided that there is still work God wants us to do together so we are trying to be open to what that is. Does that sound like bargaining with the Lord? We hope not but we feel truly blessed by the time we have had and hope we have a lot more.
Hope you all are enjoying a great Thanksgiving with family and friends. We continue to pray for all those who are praying for us. God Bless. Mary Anne
P.S. The new picture to the right is from our trip to Paris in September.

Summer's Over!

Most of the leaves are off the trees and I have already put up the outdoor Christmas lights. Wow! Summer is definately over and winter is upon us. Even though I won't turn on the Christmas lights 'til Thanksgiving night, they are up and I actually chose a day where it was 68 degrees to do it in. Normally, I like to wait until it is about 20 degrees with a strong wind and then put them up.

I have been going to Dr. Ayre and getting IPT every week since the results of the last Pet CT. My queasy stomach is about the same. It's not so bad; it is just disconcerting! Dr. Ayre is perhaps the most caring physician I have ever encountered. He would be more than willing to come in on a Sunday if I could not get in at another time.

I have been making sawdust in my workshop.....making some things for Christmas....stuff for the neighbors. Cassie, our daughter, who is very artistic put the finishing touches on them and made it look really good. She is very talented and most willing to help.

We will be celebrating Thanksgiving at Kevin and Tracy's house. We will all be together except Karen who is in Phoenix and will have her best friend Kelli there with her. Karen will come in for Christmas but Michael and his family will not. We will fly to Cleveland on December 15 to have Christmas with them. It is so hard to get the whole family together at one time. After being gone for so long it is so good to be back home and attend services at our church here in Carillon. We will actually be home for about two months before we leave for Bonaire (God willing).

Mary Anne's back is hurting her as she has a bulging disc. She is scheduled for an MRI. We are praying that it will resolve on its own and ask for your prayers also.

With Thanksgiving almost here, I think we are all reminded of the vast number of gifts that God has showered upon us. Each of you who read this blog and pray are certainly among our gifts. Thank you!

Have a great Thanksgiving.

Joe

Back Home

We did drive back to Chicago on Wednesday the 7th of November. On Thursday I had lunch with Ben Pahlow the co-founder of Global Family Rescue (see link to their website). They are having a fund raiser on Saturday (today) and I am MC-ing it. What a great cause. On Friday, Mary Anne and I went to see Dr. Ayre. I got another IPT treatment and he talked to us about the results of the most recent Pet CT. Not very favorable. The report was not very clear and rather general in nature but it said that the number of tumors in my lungs had increased. I don't know whether this meant from the five that were there to six or to sixty. It also said that some of the tumors had increased in size....no mention of what percentage increase. It also said that the tumors in my liver may be experiencing more viability on the outside ring (the inside is dead). Disappointing that the report was so non specific. The bloodwork that I had done was ALL normal including the CA 19-9 which is the first time that has been normal in a year and a half. (19-9 is a marker for gastrointestinal cancers) We will take the CD of the Pet CT down to Dr Mary Mulkahy at Chicago Northwestern and have her look at it. I am also going to increase the treatment from once every other week to every week and then have another Pet CT in 6 or 7 weeks and see if the increased treatments helped. With the exception of the queasy stomach I am still feeling well.

My continued thanks for your prayers. God bless you,

Joe