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

Happy Halloween

Joe left early this morning and will get his IPT today and his Pet scan tomorrow. We probably won't get the results until next week but at least it will be done. Joe was off one day on our return home. We will be driving home on the 7th and Heidi's Dad will be coming here on the 8th. We hope to be home until Jan7th but I might fly back to Ohio to help Heidi if she has RFA scheduled or if she goes to MD Anderson for a consult.
Halloween in this house is way different than at home. We don't ever have trick or treaters living in an adult community so I will be busy handing out treats and going to school to see the parade of costumes.
Have finally caught up on the cc website with all the other patients that have cholangiocarcinoma to see what they are doing and how they are doing. Lots of different ideas out there but everyone seems to stay away from sugar, alcohol, eat lots of vegetables and fruits, take supplements and pray for a cure soon. It is scary when you get a new symptom or one you haven't had in awhile. That's when we turn to God for wisdom, guidance and knowledge that we are following His Plan even tho we don't know where it is going. Love to all of you and God bless. Mary Anne

Home for a bit

My stomach has been acting up (queasy) for the last week and one half. Because of that, I am trying to schedule an IPT treatment and have another Pet CT the same day. I am currently waiting for approval from Medicare. The order was not written quite from my doctor and consequently they turned the first request down. We are trying again. If it comes through today, I will fly out tomorrow, have the pet CT and IPT the next day and fly back to Ohio the next day. We are planning on driving home on Nov 8th. Heidi's Dad will be arriving to help out on the 9th. She is feeling well and gaining strength every day.

As happy as we were to help out it will be good to get home again. We have been home so little this year. So far we have only been home during July, August and half of September. In many respects it seems like a lost year.

Thanks to all of you who are praying for Heidi and me.

Joe

Ohio

Heidi came home from the hospital yesterday. She seems to be recovering well from the surgery but as might be expected is having to process "having Cancer" I have bbeen spending some time with her discussing the importance of a positive attitude. There are lots of things to be positive about for her.

This morning we talked quite a while about God. She does believe in God and seems open to learn more. I told her that having Cancer was not the worst thing...having Cancer without God is the worst.

I think it is so good that we are here. It's a lot of work running the house and the three kids take time also. I am doing homework with Isabelle every night. She is very bright and helps me a lot so that the homework gets done.

Thanks for adding Michael and Heidi to your prayer list. We will be here til the 8th of Nov and then head home.

Joe

Another challenge in the Coburn household

Hi Friends,
We made a sudden change to out plans of being in Bonaire for the month of October. Our daughter in law Heidi was informed from a colonoscopy that she had a tumor in her colon and after biopsy, it was found to be carcinoid and metastacised to her liver. They have three small children and live in Ohio so Friday we flew home and drove to Ohio on Saturday to help out with the kids. It was a blow for Joe to get his diagnosis last year but he was 66. She is 44. It also is treatable but not curable by medical standards. She will hve RFA on the liver mets after she heals from the surgery in about a month. Please include her and Michael in your prayers. We plan to be here til the 8th of November but can't stay away from Joe's treatments either. We will try and pass on all the good nutrition info as well as the hope and strength they can get from God in this tough situation. We are back to helping with homework, feeding animals, and doing household chores that make us feel needed. Joe has Connor the 10 year old out fishing right now. There is a website for people with carcinoid tumors just like the cc website and that has been helpful for Mike. Joe continues to do well and our few weeks in Bonaire were really good to just relax and sit back.Take care and God bless. Mary Anne

Good Divin'

We are still in Bonaire and although not cold at all the weather has been unusual for Bonaire. The last few days have been cloudy and lots of rain. The island only get 22 inches of rain a year and we got 2 1/2" on Saturday. As many of you know, I suffer from SAD (Seasonal Affective Disorder) which means that when the sun is not shinning, I am not in such a great mood. Saturday was about the third day that week that it was clooudy and I was pretty down most of the day. Sunday and today dawned sunny and nice and we went diving both days. Today we saw a Spotted Eagle Ray and I was able to get some nice pictures and Sunday for the second time we saw a Queen Trigger Fish (beautiful) and I also got lucky with the camera.

We are so blessed to be able to dive and see God's creatures that so very few get to see. The colors and variety anr unbelievable. I am not sure how one could doubt the existance of God with all the wonders of creation around.

Thanks to those who comment on the blog (Caroline above......we continue to pray for you). I so enjoy reading them.

Joe

Just Relaxin!

We have been on Bonaire for about a week and a half and it has been very good. On our own schedule and very relaxing. We went to the Small group that was started when we were down here in Jan. They are going strong and growing. They are studying the life of Jesus and the leader (Ernie) is doing a GREAT job.

Yesterday, I had my doctor in the States fax orders for bloodwork to the doctor I see here. I went in to see him yesterday and had the blood drawn yesterday afternoon and I picked up the results this afternoon. ALL of the results were very good. Liver function was all normal. Red and white bl;ood cells were also very good. Praise God! They were unable to do the Cancer markers here so I will probably get that done when we return home.

I made arrangements with American Airlines to came home two weeks earlier than planned in the winter so that Mary Anne can train with her coach prior to the Master's State Meet. I also made arrangements to come home in February (in the middle of our stay) for a week in order to get three IPT treatments. I will do that and then return to Bonaire for five more weeks.

This island is so much like home for us. We have been coming here for eleven years and know so many people. The Antilliens are very friendly and laid back. The island is sub tropical and not what one might picture when thinking of a tropical island. No long stretches of sandy beach but this is one of the things that maked the diving great. We think that it is beautiful. There is no discrimination here........I believe that it is the way God intended the world to be.

Again and again thank you for all your prayers!!!

Joe

Bonaire

We arrived here with no problems whatsoever on Monday night at 8:45. It was good to get back and we have seen quite a few people on the island that we know. Yesterday at the Warehouse market a lady who worked there asked me how I was doing? She said she knew me from church (on Bonaire) and that the testimony I gave in Feb really touched her. She is praying for me every day. WOW!

We went to Rum Runners for dinner last night and Bashi the manager asked how I was and said he had told his mother about me in Jan. She had asked about me just a couple of weeks ago and Bashi said she prays for me every day.

We went on our checkout dive on Tuesday and went to one of our favorite sites yesterday. Water is warm at 84 degrees and visability is good. We are hoping to be able to see the coral spawning tonight as we will do a night dive.

It is good to be here, very relaxing with no schedule.

Our love to you all,

Joe

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This is the second of a whirlwind three days. We are unpacking, then packing, going to the cleaners, shopping, trying to remember everything and endeavoring to get caught up on sleep. As I am saying this, I realize that this is not going to evoke a great deal of sympathy from any of you. I am excited about going to Bonaire on Monday for a month. The usual resort guests will not be there in October and so Mary Anne and I will have much more time with just each other which will be really good. The temperature will be about the same but because the wind will be much less, it will seem hotter. In October, they have a large sailing regatta and also the annual coral spawn (not nearly as sexy as it may sound). This happens at night and we have never been in Bonaire in October so we are anxious to see that.

I am still feeling excellent. I am thinking, just a walking miracle.....an answer to all the prayers from so many. Thanks....you have touched my heart and obviously God's also!!!

Joe

Paris - 1

Dear Friends,
We have been in Paris for 5 days and leave the hotel in the morning and don't come home til about 9 at night. We are having a great time and Joe is keeping up quite well. We have been to the Eiffel Tower, the Louvre, Arch de Triumphe and others. Tomorrow we go to Versailles. We walked 7 miles each of the last two days so we are getting our exercise. Joe continues to feel just fine and he is taking hundreds of pictures. We enjoy traveling with the Carnevales - our ideas of a good time match up so well. we will attend church at Notre Dame on Sunday although we already visited it the other day. We plan to go to Euro Disney on Tuesday and we head home on Thursday.
Love to all of you and thanks for your comments about the video Cassie posted and the party. God Bless
Mary Anne

What A Great Day!

For several months, our son Kevin and our daughter Cassie and George (a friend) have been working on putting together "It's a Wonderful Life"...Joe Coburn. A celebration. It was a golf outing that began with lunch, a demonstration by the world's foremost trick shot artist, Peter Longo (who donated his time to put on the show), 18 holes of golf and dinner. Everything went off as smoothly as could be imagined. Friday the 14th was predicted to be a lousy day but after much prayer, God came through with a cloudless, beautiful day.

We had about 64 golfers and an additional 75 people that came to the dinner. To say the least, I was overwhelmed by the response. We had people come from Milwaukee, St. Louis, Georgia, Florida, Kansas City, Indianapolis, Toronto, Canada, Phoenix, Arkansas and Ohio. People that I had worked with and had not seen in years, made such an effort to help celebrate that day. Of course, as Mary Anne says, "They would rather come to this than a funeral." Yea, me too! Cassie had little bells on each table with pictures of me at all different ages on little tags on the bells and additionally made an awesome video with lots of pictures of me with great, appropriate music. She is so talented. Each one of the children got up and spoke....just beautiful. Then Kevin invited others to come to the mic if they wished and many did. It was so affirming.

The fact is that I have had a wonderful life. I have been blessed with an awesome wife, four great children, eight grandchildren and the best of friends. I have been so blessed by God. He has allowed me to be here far longer than I thought I would be after the diagnosis in July of 06. He is either not done with me or He has more work for me to do.....maybe some of each.

Monday, the 17th we are flying to Paris for 9 days with dear friends the Carnevales who we have vacationed with many times. We return home on the 27th of Sept. We are home for three days and then fly to Bonaire on October 1st and will be there for a month.

If you are reading this blog, I have been blessed by you because you are a relative, a friend someone who is praying for me or at the least someone who cares and is interested.

You have all touched my heart so. Yesterday was one of the GREATEST days of my life. For all of you who shared in that day..........THANK YOU SO MUCH!

Love you,

Joe

Prayers answered - Praise God

Hi Friends,

We just returned home from the doctors with the report of the P.E.T. scan. The report is not as detailed as the ones we got in Arizona but there are no new sites and the current tumors in the liver and lungs remain about the same. The lung ones may be a bit larger but the largest is only 2 cm. the liver ones are still partly necrotic, which means dead, so not real active. The blood results were all normal including the liver enzymes. We didn't get the Ca 19-9 back but that is not real important in intrahepatic. The doctor was pleased with the results and will keep Joe on the same IPT schedule and we are thrilled that his condition remains stable. He has some queasiness over Labor Day weekend but it is gone now.

We have added some joy to our life. We have a friend who broke her kneecap and needed someone to care for her 4 1/2 pound mostly Maltese dog. Since we lost Jake in May, I jumped at the chance so we have Gabe until we leave for Paris, Sept. 17th. He is a delightful dog and fills a spot in our hearts. Look how tiny he is! We went to see the Bourne Ultimatum last night to get Joe's mind off today and it was really exciting.
We are happy so many of you can make it to the golf outing or just the dinner. We are truly celebrating prayers answered and praying for wisdom in what God wants us to do with our time here. We thank all of you for your prayers and support in this waiting time especially. We wanted to wait for this report to blog but we called several of you on the way home from the doctor. Have a great day and God Bless you all. Mary Anne

Triathlon Update

Our sons, Kevin and Michael competed in the Chicago Tri today. There were 8400 competitors making it the largest Tri in the world. Kevin, who was challenged by his older brother, not only finished the race (we had some concerns) but did very well. Michael bettered his best time and then left to drive back to Ohio (about a six hour + drive). We were very proud of both of them.

At service today, Mary Anne joined the worship team. It was very nice to be singing together with her. She did a great job and we will be singing together again in September.

This Thursday, I will have another PET CT. This will show what's going on in my body and what the tumors are doing. Even though I feel well, I have concerns each time I have a scan. Of course, I am praying that the tumors have not grown at all. I am also hoping that the Insulin Potentiation Therapy which I am taking every other week will be enough to maintain where I am. I have another one of those treatments on Wednesday. The last time I had this treatment I was very nauseated and so I am hoping that doesn't repeat itself.

Lots of people are signing up to come to the Celebration of Joe Coburn's Life Golf Outing. I am bowled over by the number and distance that some are traveling to attend. Very humbling!!!

Thanks to each of you who are praying for me. It touches my heart so!

Joe

Time Flies Again

It's been a week (again) since I last put anything on the blog. I can hardly believe it. Mary Anne returned home safely outside of the sore neck she got from having to haul all her medals around. This Wednesday, Michael and his family from Ohio will be coming in to do the Chicago Triathlon. Michael has managed to goad his younger brother Kevin into doing the Tri with him. Should be something....I get tired just thinking about it.

I played golf a couple of times last week and I am incredibly inconsistant....100+ one day and high 80's the next....no clue as to what's going on.

There are already a number of responses to the "Celebrate the Life of Joe Coburn" event. I am humbled by the people who are coming from far away...Florida, Georgia, MO, etc. I am hoping that we will have good weather. Today is terrible with rain and wind....YUK! If we get a day like that we will be spending a lot of time at the bar.

To all those of you who are praying for me, THANK YOU! It is impossible for me to tell you how much that means to me.

Joe

Empty House

Mary Anne left for Houston, TX on Friday morning and will not return until Monday evening. She, as you probably know, is a swimmer and belongs to the Naperville Waves. She traveled to Houston to compete in the Masters National Swim Meet. This pits the best swimmers in the country against each other. She did wonderfully well. In her five races she got a fourth, three thirds and a second. I am very proud of her and she was very happy with how she did.

I took this time to get some things done around the house that I have wanted to do for a long time. Cleaned some spots in the carpet, did some painting around the garage door and side door and also patched and painted the ceiling in the master bath. I spent some time figuring why the whirlpool tub was not working and was able to fix that; so it was a productive few days. I am sure looking forward to her return however.

Our son Kevin has decided to hold a golf outing to "Celebrate the Life of Joe Coburn". It will be held on September 14 and will include lunch, a trick shot demonstration by Peter Longo ( the best in the world) 18 holes of golf (scramble) and dinner. Cost: $80.00 Any proceeds will go to Global Family Rescue (their link is on the right). They are helping under-resourced families in Uganda. If you are interested in attending, email me and I will take care of it!!!! (You can download a registration form in the links area or just click here too!) I am still feeling great. Thanks for all the prayers!

Joe

Time Flies

Wow! I can hardly believe that it has been a week since I last "blogged". Last week I had my first IPT (Insulin Potentiation Therapy) from Dr. Ayer. I like him a great deal. He is very warm and willing to spend lots of time with you. He did the IPT himself which surprised me w bit. Dr. Lodi in Mesa has three full time nurses doing the "stuff". However, Dr. Lodi does much more than just IPT. He does vit. C, Ozone treatments, Kelation and general nutrient buildups. I had no side effects from the treatment. After IPT we met with a nutritionist for about and hour and one half. Seemed well versed in Vegan and Vegetarian eating. He is also a believer in Eating for Your Blood Type. By the way, do you all know that the word vegetarian is an old Indian word meaning "Bad Hunter". Just kidding.

Our pastor Earl asked me the other day if I could build him a platform for him to preach on. I built it and then tried to get it into two vehicles to get it to the club house. One of the vehicles was a van and we still couldn't get it in and it is only about 51" square. Today my neighbor who has a pickup helped us get it over there. YEA! I built a trap door in the platform so that when Earl's message goes longer than 25 minutes, the trap door opens, Earl disappears and we can then move along with the service. Noooooo, Earl is great and rarely speaks longer than 25 minutes. I gave a testimony in church on Sunday about my physical condition and that it was surely an answer to prayer. There are so many in the congregation who are praying for me. Thanks and blessings to all of you who are praying for me.

We spent last Monday and Tuesday with our son Michael and his family in Ohio. It was a great visit and on Monday, Mary Anne and I played with Michael and his son Connor who is 10. Connor did very well and look forward to playing with him when they visit us.

Enough for now!

Joe

Great Reunion

Good Morning,

It was a great reunion. About 70 of us showed up at Bass Lake Indiana where Mary Anne's sister Tricia and her husband Bob have a wonderful lake house. They have lots of toys to keep the children (of all ages) entertained. Pontoon boat, Wave runner, Hobiecat, Sunfish sailboat , windsurfer and a speed boat. They put in a tremendous amount of time, work and money to make this a wonderful time. We are blessed that this is a family that gets along great and loves each other. Not too many like that I think! Most arrived on Friday afternoon and departed on Sunday after lunch. Most of the time was spent eating as I recall with occasional bathroom breaks. Family came from Wisconsin, Minnesota, Illinois, Michigan, Ohio, Arizona, Arkansas, California, Colorado and Mass.

Yesterday afternoon we drove to Ohio to spend a few days with Michael and Heidi and the kids. We will head back to Illinois on Wednesday, and Thursday I will begin my every-other-week IPT treatments. I continue to feel great and really enjoyed a reunion I didn't think I would be here for a year ago. I thank all my family and friends for the prayers that have sustained me through the last year and in the days ahead. We feel blessed with each day.
Joe

ONE YEAR ANNIVERSARY

Hey All,

Yup! It was one year ago today that I heard those "bad" words....."It's Cancer". Sometime before that diagnosis, Mary Anne and I were talking and she asked me if I only had a few months to live would I change how I was living. I answered "No". I was so wrong. I have grown closer to God, closer to Mary Anne, closer to the children, changed my eating habits, lost sixty pounds and done some things that I have wanted to do for years.

Here is a brief summary of what has happened the last year:

• July 26th: Diagnosed with Cholangiocarcinoma
• August: Biopsies of liver and lung - Started eating Vegan, no more Coke or sugar! Went to Joliet Oncology and was referred to Chicago Northwestern. Diagnosis of Stage four Intrahepatic Bile duct Cancer
• September: Went to Mayo Clinic in Rochester, MN for second opinion. Same diagnosis and treatment options (chemo...ad infinitum) Decided not to do Chemo......easy decision, I felt good, why mess that up!
• October: Traveled to Utah and North Carolina
• January: Went to Bonaire
• March: Started feeling some nausea and pain. Came home early to go to Mesa, AZ for alternative treatment. Pet CT shows moderate growth of tumors.
• April: Feeling better. No nausea and the pain is gone.
• May: Continue treatments. Came home for two weeks to rest up. Pet CT shows an active tumor in liver.
• June: Radio Frequency Ablation to destroy tumor in liver. Three weeks later a Pet CT shows tumor is gone and the five tumors in my lungs have shrunk 30% each. We drive back to Plainfield from AZ.

GREAT TO BE HOME AND FEELING G R E A T !

FROM WHERE I SIT, IT CERTAINLY LOOKS LIKE AN ANSWER TO ALL THE PRAYERS FROM ALL OF YOU!!!

THANKS SOOOOOOO MUCH!!!!

In August I will take Insulin Potentiation Therapy every other week here near home and hopefully that will allow me to maintain the status quo!

Joe

July 23, 2007

Hey All,

Here is a Bass that I caught a couple of days ago in the little lake right behind the house. It's so great to be able to walk out the door and go fishing!!!

I went to see our regular doctor today....just for a checkup and to bring him up to speed. I had some blood work done about a week ago and had the results sent to him also. Everything was normal including all my liver enzymes. The only thing that was elevated at all was the CA 19-9 which was 54......which it has been for some time. I am still feeling excellent....praise God!

As Mary Anne said, this Friday we are headed to the family reunion....70 some....too many people. On Saturday I will play golf with two of my brothers-in-law. On Sunday, after lunch we will drive to our son Michael's in Hudson, Ohio. Heidi and the kids will leave earlier. Michael is doing a bike race around Bass Lake and so we will wait for him and then head out. On either Monday or Tuesday we will play golf with Michael, Connor (9 yrs), Mary Anne and I. Connor has gotten really interested in golf this summer and we have never played with him so that should be fun.

Thanks to all of you for your support and prayers.

Joe

Sunday July 22, 2007

Hi Friends,
Well another week has passed and things are still terrific. This disease has done so much to help us appreciate each other and all the good times we have had and are having. Joe spends a lot of time just sitting on the deck looking at the little lake and the beautiful flowers that are in full bloom right now. A great way to thank God for all his blessings. We have been dog sitting our daughter Cassie's King Charles spaniel and it has been a delight. Not exactly like having Jake back but it sure fills the void Jake left. Yesterday we also got a little shitsu for 6 days while her master, Debbie Ferguson in out in AZ looking for a new job. Molly the spaniel goes home today.
Friday night we went to the hot rods with our son Kev and his family Tracy and the two boys Jason and Ryan. This is something Joe and I did when we were in college and again when we used to camp with the kids. We would spend Friday night at the race track and pick cars and get points for 1,2, and 3rd. Friday night was a perfect night and we had a great time. Maybe seems like a silly thing for people our age to do but it brings back great memories. Yesterday we played golf together and it was another perfect day in the 70's. We just cherish these good days and are so thankful to God for giving them to us.
Next Friday we head to the BIG family reunion on the Murphy side with 72 of the 76 of us together at my sister Trish's lake house on Bass Lake in Indiana. We are staying at a hotel but the days will be spent at the lake. This Thursday marks one year that Joe was diagnosed with intrahepatic bile duct cancer. Neither of us thought we had this much time and we are trying not to waste it.
Thanks to all of you for your continued prayers and contacts. Linda, it was great to see your comment on the blog. We miss you guys too. Charles, good to see your post. We know you are a good prayer warrior and it was because of you that Joe started going to Bible study so many years ago. Take care and God Bless. Mary Anne

July 15, 2007

Hey All,

Yes! There really is a "Joe". I am so grateful to Mary Anne for writing on the blog with such faithfulness. She takes such great care of me. We have been home a couple of weeks now and it is all I expected that it would be. Great friends, lots of relaxing and a church we love to attend.

I am really feeling well these days. For the last few weeks I have not had a queasy stomach at all. This is the first time since Sept of 05 that I have felt normal again....Praise God! As Mary Anne has told you the latest Pet CT was excellent.....what a gift! The procedure along with the chemo and low red & white blood count really took its toll on me. I had NO energy whatsoever. Mary Anne said that if my friends had seen me then they would have been really frightened. I know I was. I believe that I am all the way back to normal now(or at least as normal as I get). I played golf last week, shot a 90 and was not tired when we were through. I was very interested to see how I was going feel after playing 18 holes but I felt just fine.

I led worship at church service this morning and it felt soooo good. I love being able to worship with our friends and neighbors. As always I am so overcome and struck by the number of people who are praying for me....it is so humbling. My thanks to you all for your thoughts and prayers.

Love ya,

Joe

Tuesday, July 3, 2007

Home at last! We arrived home yesterday about 4 in the afternoon and we were so happy to see our house. Ed and Jayne were sitting on our driveway reading their mail just waiting to help us unload the car, and was it ever full. The whole trunk was loaded as well as a bike rack with our two bikes and the whole back seat. They made short work of it and we were so grateful for the help. At least this time Joe could help unload stuff. When Karen and I packed up, all Joe could do was sit there.
Earl and Pat stopped over last night as well as our neighbors and we felt so welcomed. We live on the golf course and today all sorts of people saw Joe outside on the deck and they stopped to say hello. There is nothing better than hugs to lift your spirits.
We are slowly getting everything put away and Cas and Kirk and the kids are coming over tomorrow to share the 4th so it will really feel like we are back when they get here. As soon as I show Joe how to do the blog again he will write for himself and you will be able to tell he is back to his usual cheery self. We can't believe the improvement in just two weeks of no chemo. We think Joe will do no chemo or treatment for a month. We look forward to a summer of relaxing, sharing with friends and family and being back at our home church. As I promised, if I got my voice back after my thyroid surgery, I would try out for the worship team so that will happen in the next few weeks. Although I don't like being in front of people, I love praising the Lord, so that will outweigh being in front of people. Can't wait to see all our church friends next Sunday and my golfing ladies this Thursday. The joy of the Lord surely is our strength. Take care. God Bless. Mary Anne