more on heather (8/14/09)

I realized that since my blog does not put dates on things that I need to if I am going to use this as a journal. Well, lots has been happening and I should have been blogging about it all cause now I can't remmeber everything. I have been so busy finishing up my summer teaching job (YES!!!!) and starting my new job. I have had 4 weeks of over lap and I am exhausted.

Here is the summary on Heather since I can't remember it all. Heather decided she wanted to go to my parents house last weekend. She requires a lot of care and attention. She is in unbearable pain all over her body. Her bones hurt if you just touch her. She is also very anxious still and so she does not sleep. She has hallucinations and comes in and out of reality. So basically whoever is with her gets no rest cause she does not always sleep much at night and when she does it is for short periods of time. She needs lots of consoling and reorienting when she awakens. Last night I was in bed with her and she woke up thinking she was in the hospital. To give Scott a break my parents took her last friday, so a week ago. heather has wanted to stay there. Down fall is my parents are both really old and they need there rest. It is so hard to be up all night with Heather and then take care of the kids all day plus heather. My parents try and do shifts at night so they can each get a few hours of sleep. Lets just say when I say my parents the other day I thought when did they get this old. They aged like 5-7 years in 3 days. I told them I was going to come after them if they did not take her back home or if they don't get some nursing care to come help (preferably at night).

As for heather, last weekend she informed us what she wants at her funeral,that she bought a new temple dress and some other things. My siblings and I have been left some very sad messages in the middle of the night with Heather telling us she loves us in case she does not get to. But if you ask her about dying or what she wants. She still wants to fight. I am not sure if she is really in her right mind, but she told my dad she did not want the home nurses to come and see her cause all they do is talk to you about dying and she does not want to die. Watching her now is not really watching my sister. her personality is so different. It makes it easier to let her go, especially in such pain. I was hoping for hospice care. But this week the neurosurgeon said she has a tumor on her spine and that could be causing most of the pain. Or it can be from the cancer in her bone, but they don't know how in depth that is without a bone scan. So he suggested radiating the tumor to shrink it and help with her pain. She also was put on some new pain medicine which is helping a lot but not enough. Today my dad took her to her radiation appointment. They decided she was in too much pain and too anxious to lie for 3 hours while they did the treatment. But the radiologist did spend lots of time with my dad discussing everything. She wants a more in depth scan to look at all of Heather's bones closely as my dad kept saying the pain is really the worst in her hips and thighs. Finally maybe we can see what is really causing this pain. It is probably a combo of the spinal tumor and all the stuff in her bones. This doctor also gave some different pain meds and instructed my dad in depth on her pain regimen. Radiologists normally don't do all that so it was really nice to get that kind of attention.

What is this coming weeks plan? Tuesday go to oncologist if blood levels are ok then have first dose of new chemo. Thursday have another scan if pain in enough control that heather can lie still for it. Every time I think we are at an end point more stuff is in the works to get done. I am just along for the ride. whatever happens happens. My parents still think they can nurse her back to health. I am afraid they are going to die trying.