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!

Saturday, August 1, 2009

Anyone affected by cancer knows that so much of the fight is the waiting...Waiting for test results, waiting for medications to work, waiting for improvement, waiting for responses from health care professionals who hold not only the lives of their patients in their hands, but everyone who loves them as well.

We cannot complain at all about a two day wait for Amiee to start the Nexavar. We have not yet spoken to her oncologist but hope to on Monday. We don't know how many pills she's been allotted or what her hospitalization plan is. More questions and more waiting.

Yesterday at the hospital we had another 'incident' with a case worker insisting we complete the hospice package and that basically everyone is ready for her to be discharged. She's been in the hospital for almost two and a half months straight this time. We told her again that we are waiting to hear from her oncologist. So many different doctors and nurses and case workers and social workers and all saying different things. She vomited while we were playing Monopoly and we had to stop. We called the nurse to come clean her and had to explain why it didn't matter if she was bathed yesterday OR this morning, she needs it again. Right about this time a different hospital Chaplian enters and starts talking about having prayed over Amiee earlier in the week. We are close to another chaplain, who has been there for us and is a very ethereal, spiritual woman. That works well for us. Amiee turned away when he came in. Unfortunately, the collar and black robe made him appear more of a figure of fear than that of hope or inspiration. We know the palliative care order is in place but we're still in fighting mode. When asked by Amiee's Dad what denomination he practiced he claimed nondenominational. When pushed a bit harder, he elaborated and quietly left.

Our understand of what Amiee could write on her whiteboard is that she'll be starting the nexavar on Monday and her oncologist will watch her for a couple of days or so. From what we've been able to research, and our previous experience, the side effects kick in fully about a week later. Her Oncologist has been fighting to keep her in the hospital at least until the chemo pills are started. She cannot eat because the mass of the tumor fills her mouth and her face was so swollen. Her blood pressure requires frequent transfustions to keep it above 70/40 and she has been on IV antibiotics to manage multiple infections. She's been receiving nutrition through a feeding tube for the duration. That's a lot of maintenance! Her veins are so hard from all of the chemo that we've been turned away from blood testing centers because no one could draw blood. Pretty concerning for us that a home health nurse would be trying to manage her care.

Either way, we spoke with Amiee about hospice again after round two with the case manager. She refuses and wants to be home. We don't know at this point if it will be for rehab or palliative care. We'll honor her wishes of course. After her talk with her doc about the DNR (do not resuscitate)she has made it clear in her quiet way that she wants to live and wants no part of planning to die. We've never talked at length about it, her dying or any last wishes. We 'understand' that if it happens, it happens. It could happen to any of us. We will journey across that bridge if we need to. In the meantime, we are fighting for her life for her and with her. If she's released next week, as always we'll hope for the best and do what needs to be done.

Monday is Really the first day of the rest of our lives....