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