Tuesday, August 4, 2009

...Or not....

The nexavar came. Last night at about 8:00 while waiting for the nurse to give Amiee her two chemo pills we learned that nexavar cannot be crushed and must be swallowed. Ooops!! The tumor in her mouth and throat makes it impossible. After much discussion and a return call from her oncologist, he made the decision to allow the pill to be crushed and administered through her feeding tube. The nexavar for sarcoma is a trial outside of a trial, and the administration of the drug adds layers to the questions of its efficacy. This IS our last resort. We are waiting for possible side effects, which seem fairly severe based on our research.

Amiee had to have 5 bags of magnesium yesterday too. They have been trying to move her to hospice for a couple of weeks now and we have been fighting for reasons to keep her in the hospital until we have determined what is happening with the chemo pills. Her electrolyte counts are only one. Magnesium affects heart rhythm, affects and is affected by kidney function, low Mag causes vomiting, which she did again yesterday, nausea and other symptoms. Yep. She has them all.

The nexavar was approved for a year's worth of the therapy and the cycle will be 27 days long, two a day.

Amiee said this morning for the first time that she feels like giving up. That this is all just too much for her and her family. She's so lonely lying there for two and a half months. She has visitors almost every day, and all of the nurses know her and stop by to visit. It is unbearable to hear her say this at this point. She is getting more discouraged. She didn't want us to leave last night and it was around 9:00 when we did and only because our dog, a lab, takes medication for seizures and needs his pills at 8:00 and our refridge was empty. The days can be so long and draining emotionally. Sleep is hard to come by at night, worrying about her there alone, and what the next day will bring. We have learned that putting things off is ok, feeling exhausted is ok, feeling angry, scared, sad, thankful for what we do have and the family we love, all ok. A crisis like this makes you reevaluate what matters and what doesn't.

She told us this morning she understands everyone has their lives and she doesn't want to be a burden any more. We were devastated! It's so hard to hear her talk like this and not be able to say anything to honest to give her hope. We are there with her and loving her and in the end, that's what matters! Her dad left early this morning to be with her and I am home trying to work. Wishing I could be there every moment. My love is there and I'll be there later to play games with her. We love Connect Four and mancala. Somehow she keeps beating us : )

We'll keep you posted!

1 Comment:

  1. debbie said...
    i could cry and cry and cry.
    we live in oklahoma.
    same cancer but they said our daughters was squamous cell. i just can't begin to go through all this in an e-mail.
    our only daughter amy was 32 years old when she was dx may 15, 2008. she went through chemotherapy and radiation....on aug 24, 2009, 33 years old with a trach and a feeding tube we brought her home to die, according to the drs. hospice took over the case but my husband and i did her care 24/7..........on oct. 23, 2009 at 1012 pm she won her battle with cancer and went home to gloryland to be with jesus. my husband and i feel like our hearts have blown up......we have one son 26 years old and has been married 2 years.
    amy never had children because when she was 10 1/2 she had a cancer called rhabdomyosarcoma and the radiation burned her female organs severly.....she was unlucky in love
    what we saw was as long as amy had insurance through her job, they faught for her but when cobra was over and she went on medicaire her level of care changed and they said they couldn't fight any more......she had a tumor on the size of her necl that was as big as an ostrich egg. she suffered terribly in severe pain
    i would love to talk with you
    i joined your blog and i hope you will join mine
    angel hugs
    debbie....aka amy's mother

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