This has been a pretty busy week. Butch's friends have stopped in to see him in the afternoons, along with Caroline, and that is very good for him. I believe that he has enjoyed these visits, and they are very meaningful. I made apple pie from the apples Irene brought us, and it was pretty good - a little tart, but - I like it that way, Butch didn't eat too much of it, but - I did! Carolyn brought over some chili, and it was delicious. Butch has been eating a bit better - not enough, but more than before. Today it rained most of the day - we need it bad, don't we? No rain for 11 days, they said. Oh, and I took him to his barber yesterday - he shaved his beard off for him. He feels much better without it. Did I mention that he has gone back to reading the NY Post every day - I am hooked on it also - he reads the sports, I read the gossip columns!
The Doctor made his house call this morning. His nurse called and said he would be here at 11:20, but - he came at 7:30! I was in my pajamas, at the computer. Butch was in bed sleeping. After I gathered myself together, and got some coffee down, we all gathered in the living room and talked. He gave us some samples of nexium (the purple pill) for Butch to take to get rid of that acid reflux - it has only happened once more this week, and he said he can take more than one a day - 1/2 hour before meals, twice a day. We discussed the nausea, and he said he thinks a lot of it comes from the anti-biotics. He has only a few more days on them, so - we'll see. He takes two different meds to keep the nausea down, but he still gets sick. Dr. Gehring said they would call Lourdes Oxygen today and get it set up for Butch. He has a really hard time breathing when he stands up, and we think the oxygen will help him. The Doctor thinks that comes from the cancer - where it has metastasized to the diaphragm is pushing against the lung. This has probably also contributed to the fluid collection in the lung. So, hopefully, the oxygen will give him some relief. As for the jp pouch, it is not draining and Dr. Gehring thinks that is ok - we see no signs of infection - temperature is normal, so - he says - let it go. We also discussed Home Health versus hospice, and Dr. Gehring is Ok with Butch's decision to stay with Home Health a bit longer. He said, as I have been saying for a few days, that Butch seems MUCH better this week. Since he will be coming to the house to visit, and Home Health comes twice a week, and we can have oxygen, and the pain is under control with the medication that we are using, he feels we are good to stay this way for now. I must tell you, however, that the results of the CA 19-9 were not good - 10,349.8 (up from 6500). That tells us that the tumor progression is rapid.
We had been getting a PT INR weekly, and Butch was back on 5 mg. of coumadin. Well, Endwell Family Physicians called me the day before yesterday, and Butch's protime was 8.9! Normal is 1 to 2, they keep his above 2 so as to not get a blood clot - 8.9 is off the charts. If he cut himself, he would never stop bleeding. I went down to their office and picked up a vitamin K pill, he took it, and we stopped the coumadin. We have checked it since, and it is 3.9 - going to have it checked again tomorrow. Dr. Gehring said the big number is from the cancer also, and he probably won't need any more coumadin. I am a little confused, as I understood that liver problems cause blood clots, so he should still be protected, but - as long as we check it and keep it between 2 1/2 and 3 1/2, I hope he will be OK.
There was a posting on cc.org last week talking about new trials beginning soon - by the Mayo Clinic. They will be testing some new chemo's that have been developed for advanced stage CC patients. Of course, this is the beginning stages of the tests - it would be years before anything came to market, but - it is wonderful news at any rate. There are many other things going on in the CC cancer world - we (the chlangiocarcinoma foundation) have developed brochures which we are all going to hand out to local doctor's, oncologists, cancer center's, etc., to spread awareness of CC. And then of course there are the letters to Oprah. These things which we are doing ease the pain a bit for me - I know that these steps toward a cure will someday mean CC will be beaten. I pray the same is true for all cancer.
The 2nd bud opened yesterday on the lily in the yard - I look at it often. It reminds me of God's promise.
Friday, September 26, 2008
The doors of wisdom are never shut. - Ben Franklin (1706-1790)
Posted by Joyce and Butch Clegg at 7:39 PM
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