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