If it hasnt been real enough already, heres where the s**t gets even more real. Thanks to all who are following our journey. Our dearest Betty is losing more ground. Betty had a pretty good week. On Dec 29, she was not eating and drinking much due to an oral yeast infection (thrush). I wasnt sure she would last the week. Her only medical treatment beyond comfort care is for the thrush. She has responded and is eating and drinking more. She met her newest granddaughter, Bridgette Joanne Elizabeth Strooband on New Years Eve. All of her family has been in town since then. Betty is still ambulatory with assistance. Today, after bathing her in a shower chair, we headed for an appointment with her oncologist. It was to be our first wheelchair outing. I asked my son Keegan to stand by to help getting Betty into the El Camino. She surprised us both by strongly walking up to the car and climbing in as she would have months ago. More surprising, she had a half-liter bottle of water, unscrewed the previously opened top, and took several drinks from the bottle. This was something she hasnt been able to do for a couple of weeks. She has been gulping down liquid which has its own hazards. Its always somethin. She told the doctor she was not doing well, that everything was going wrong. He asked what her top three complaints were. First was being unhappy, upset about what was happening and all the things she cant do anymore, which is typical in seriously ill patients. She also mentioned body aches, which was new. Her only pain has been some sciatica issues which are managed with non-narcotic painkillers when necessary. Flu-like body aches are common, but active multiple myeloma can involve bone pain.as the myeloma takes over bone marrow. She was ok on pain the rest of the day, but will be taking a low dose of vicodin for the body and bone pain. The third complaint involved assorted bleeding from extremely low platelet counts. Betty is sleeping more and responding less. She is still very much present during her more lucid moments. Her late former partner, Buds dad Canadian tenor sax player and bandleader Don D.T. Thompson, left Bud his wooden music stand. It is a very nice piece with the large initials DT cut out and some scroll work. The end of one scroll is missing. As the subject of the stand came up, I asked Bud if he knew where the missing piece was located. He didnt, but Betty piped up and told him exactly where to find it. Sure enough it was there. Who knew? She had a wonderful hour with some members group shes hung with every Monday night for the last 11 years. Lots of talk, hair and body care, and that gal stuff. Sister Cat and granddaughters Ava and Bridgette were in on some of the action. The family came back near the end of this. Betty spent some time chatting with everyone before nodding off. I dont know where her energy is coming from. Medically, she should have almost. She has no reserve. Right now, Betty is in our bed and I can hear her snoring gently as I write this. The support from friends and family has been incredible. As I wrote in my Christmas eve missal, All is as it should be. Absolutely everything is being handled. Im spending more me time as the nighttime monitoring/assistance is taking its toll. I have been sleeping with a mothers ear for several weeks. Ive cut out most sleep/pain meds so I am not impaired during the night. I conked out about 9pm tonight and hit the sack. Bettys sis and the kids put her in bed about 11. Writing helps me process everything and is actually somewhat relaxing. Who knows, there may be a book in here somewhere (Its Very Betty ???) The hospice nurse will be here in the morning. And several hands-on workers of varying types will be here tomorrow. All bets are off on how long she will be with us. At last weeks (12/29) oncologist appointment, Dr. Kossman asked her how much time she thought she had left. Days, weeks, or months? She answered weeks even though things looked very grim a week ago. She may well make her goal! Your continued support,understanding, and love is greatly appreciated. Love and hugs for all. jon
Posted on: Tue, 06 Jan 2015 10:59:23 +0000