Hi Friends,
On Tuesday, Dr. Ebrahim expressed concerns about our ability to manage Anne's pain at home, but at the same time he told us to go ahead and plan to go home on Friday. He's thinking hard on the idea, trying to make it happen. His concern is mostly with her pain overnight.
Low and behold, last night at 3am Anne had an incredibly sharp chest pain which woke her up and scared her. She was pretty shook up about it this morning when I got here at 8:45am. Dr. Ebrahim had already been here by then, so I chased him around and he came back to see us together.
He said the pain is coming from right where the tumor is and where the stents are. Of course he's real concerned about that going forward, especially not knowing whether Anne will ever get strong enough to fight the disease. I just continue to think positive and have hope. There's just no other way to think about it short of feeling overwhelmed and discouraged. Can't have that!
Yesterday late morning he increased her Fentanyl patch from 12.5mg, up by 25mg, to 37.5mg. Today he has changed her IV Dilotted pain med to oral form. Anne has been asked to stay ahead of the pain and ask for meds as soon as she feels it coming. The oral pain meds take longer (20-30 mins) to work, but they last longer in duration than the IV version. We continue to seek and find a balance of meds to go home on.
It's now almost 2pm and Anne has requested pain meds twice since I got here. I'm thinking that the extra Fentanyl patch medicine didn't kick in till late morning today. That's my way of trying to explain the early request. The later request was due to her choice of foods at noon. Anne has eaten cottage cheese the past few days, probably because it's comforting to eat, however it has made her sick each time. This is a hard game to watch, and I'm sure much harder to play. We'll do our best. I'm not looking forward to asking her not to eat what she wants. I'm starting to think that Anne will not be able to have much more than snacks going forward. Attempts at meals just are not working. Anne got dressed in her own clothes today though, she is ready and wanting to go home, and I'm ready to bring her.
Anne has now lost about 60 lbs since Jan 17. It's a combination of fluid and regular pounds. She isn't eating alot of food, and according to the Dr. there's still some fluid to get rid of. She continues to walk around the block here, many times per day, using her new walker.
Please pray for her, for no more setbacks, and that we'll discover a good med schedule that will work to combat her pain around the clock. Also, pray that we'll be able to combat the side effects of the narcotics. I pray that the change of scenery at home will be helpful for her too.