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March 9, 2013 at 4:18 pm #21093zephyr66Participant
Wow, it’s been a rough few weeks. Whew. Amy had two hospitalizations back to back. First was for severe constipation that led to her vomiting bile, out of control blood pressure over 200 and feeling absolutely terrible. She had to have an NG tube and other stuff. It was from the long term morphine use that ironically she was just getting off after a year and a half. Then when she got home, she was hospitalized a few days later from non psychotic delirium. Her whole personality changed, she was suicidal, angry, severely depressed and her mood swings were more than anyone could handle (and I’m a mental health therapist). She was a completely different person. Turns out, it was most likely due to prednisone she was just recently prescribed for some minor side effects from clinical trial meds. Experience at the hospital was not good. We went on palliative care floor and they just wanted to give Amy Haldol for the delirium and I say absolutely no to that. Then they wanted to give her Depakote which I wasn’t crazy about and said, “let’s wait”. The doctor got angry at me because I complained to him about some poor care from a couple staff and ended up telling me I was “in denial” and even if we didn’t come up with a reason why Amy was having this problem, it was “disease progression”. He ended up telling me the “stages of grief” (uh, hello – i do grief counseling in my private practice) and said that I had to come to terms with her condition and outcome. Unbelievable. We will NEVER go to the palliative unit again there. Of course, the oncologist disagreed with their “disease progression” answer. Well, the long and short of it is that Amy came out of all of it and is doing better than she has in months. The trial medication (braf/mek) is working well. She is no longer using the walker and wheel chair and her leg functioning is returning! She drove herself to the hospital yesterday to get her next set of ct scans needed for the trial. She has not driven for several months. She is walking better and even able to walk the dogs. Looks like the nerves are repairing themselves and the docs didn’t know if this would happen. She is having minimal side effects from the trial meds and is TOTALLY off morphine now and having no pain related to her spinal tumors. So, it’s a great turn and we are enjoying every minute of it. Trying to post a picture here of Amy during the rainy day yesterday. Hope it works and that’s okay!March 9, 2013 at 4:21 pm #59530Catherine PooleKeymaster So happy to read this news. And what a beautiful photo! Thanks for sharing and your news certainly gives hope to others. I am so happy to hear the therapy is working for her. Take good care of you Sylvia too!March 10, 2013 at 12:21 am #59531dkmcParticipant Sylvia – you and Amy continue to absolutely amaze me! Wow. Take care, KarenMarch 10, 2013 at 7:39 pm #59532AnonymousGuest My goodness Sylvia what a rollercoaster ride it’s been for you two! Amy looks sooooo happy now. I bet the photographer is too.
JeffMarch 10, 2013 at 9:39 pm #59533CeceliaParticipant
Sylvia, I’m so glad that Amy has turned a corner. So wonderful to imagine the joy she must take in being outside and to drive again–such an important freedom. She is very lucky to have such a fierce warrior advocate.March 11, 2013 at 12:15 am #59534abdormaParticipant Hi Sylvia,
Thanks so much for posting —- it is really good to see someone who was in pretty tough shape a few weeks ago look so vibrant and to hear how well she is doing.
So happy for both of you. Enjoy this time!!!
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