The hospice nurse came this morning and we talked with her for a couple of hours. She explained that hospice will provide palliative care only - Make Butch as comfortable as possible - but we would not be able to get CA 19-9's very frequently, as that is a measure you would keep if you were in active care - chemo, for example, even though he can go off hospice at his wish. How would he know he should go off if we don't have a CA 19-9 to go by? Butch is not entirely ready to give up that option yet, so - she suggested we exhaust what home health has to offer before going on hospice. I have a call in to home health, and Dr. Gehring. He is scheduled to come out here on Friday, but some issues have come up first. The JP pouch has almost stopped draining - we don't know if this is bad or good. Also, last night, Butch got some bile tasting stuff backing up in his throat - he had to sleep in the recliner, instead of flat. What is this? And - could we get another CA 19-9 this week to help with his decision. Lastly, I think he needs some oxygen to help him along - he gets so breathless, it is just awful. He will make a decision in the next few days about going ahead with hospice.
Yesterday was Samantha's 10th birthday celebration at her Uncle Scott's (Glenn's brother) house. We drove over, gave her the birthday presents, and had some cake. It was his first outing in a few days, and - he did well, I thought - just so darn out of breathe, from walking. Friday Sam had a party with her friends, and - today is REALLY her birthday. We can't believe that she IS 10 -where does the time go??? Anyway, the picture is from that celebration. The other little girl is Sammy's Friend - Marguerite.
That lily I showed on the blog is still blooming - a symbol of hope to us. The weather has been very nice, and I have done some gardening. Won't be long now and the cold will set in. We had to bring in the outdoor plants already - I put them out on the patio all summer. I picked the last of my container garden vegetables - tomatoes, green peppers, green onions, and herbs. I also harvested an ear of corn off that stalk that grew in our front lawn! Put it in some homemade vegetable soup - delicious. People have been gifting us with food - fresh blueberries, freshly made halupki from St. Michael's (yummy), beef stew (also yummy), etc. Irene is up at Green Brothers picking apples - she will bring us some later. Doesn't this just make you hungry?
The letters to Oprah are going out this week, I believe. I think she has 24 of them - trying for 30. I am so anxious to know how this will go, and so hopeful that we can bring attention to the problem.