Twenty-eight

Okay, so this might be a bummer of a post. Sorry.

I switched to hospice to provide my care. The treatment docs really can't do anything for me any longer so I saw a pain management doctor at Utah Cancer Specialists and he hooked me up with Pinnacle Hospice. For now, they're only coming in about once a week to check on me, but I can call and have someone come out at anytime, and can increase the frequency of visits when needed. They told me it's all about me now, and keeping me happy and comfortable, so I guess I'll have to find my inner diva and let her out to roam. Mwahahahaha.

On a side note: if you ever have to get hospice, research the company carefully. Apparently there's about 50 hospices in Utah, but only 4 or 5 that my doctors would recommend. They had some definite opinions on the mediocre and outright bad ones.

But hospice is an incredible thing. It's still a newish concept so I know most of you can think of a loved one who, in their last weeks, being rushed back and forth to the hospital for care or help with pain control, and either spending their last hours in an impersonal hospital room or getting kicked out because insurance or money ran out and the patient has to go somewhere with absolutely no support of any kind.

We're impressed with the people we've met from Pinnacle so far. Of course, I'm always impressed by any kind of people who spend their lives caring for others - I don't know how they do it, especially the ones who are really good at it and feel blessed that this was their calling.

For now, I'm still just me, gettin' along day by day. I had a bit of good weather after the chemo cleared out of my system. As for progression - the docs think the tumors will progress but not invade further organs - the cancer will progress to a point that my stubborness will knuckle under to the burden that this fast-growing and energy-stealing shit puts on my body.

During the good weather we gave my sister and baby Thor a shower. It was fun and she got lots of good stuff. You never realize just how big the family's gotten until you have to send out invites to 60-ish people. Jeez. And that was just my side, not her husband's. She was excited about the wide range of clothes and things she received - she was worried she'd have to return an overload of newborn stuff.

Okay, and now I get to offend people: (unfortunately, I don't think the peeps that need to see this read this blog, but I need to vent a bit)

Quit rolling your eyes at Sandra when I get up to get a drink, or when I jump up to get a fork for maybe my niece or something. You don't know all that she does for me at home and everywhere she carts me around to so don't try to judge her by what you see me do for myself. She has learned that if I want to do it, and I can do it, I'm going to. Most of you probably don't know what a stubborn bitch I can be, because I'm usually pretty easy-going. Well, Sandra has learned (sorry Sandra, lol) and she knows I generally recognize my limits and stay within in them these days, so it's not worth the stress of arguing with me. =P so there

Please don't give me the long, sad-eyed, searching look as you ask me how I am. I'm still pissed-off about this whole predicament I'm in, but for the most part I've made peace with it and having a couple hundred different people trying to be my personal counselor and shoulder-to-cry-on is getting frustrating. I wish I could make you believe me, just how much your reaching out to me is appreciated. It really is. It really, really is. Just put my frustration down to my own flaws, I guess, and accept it when I reply "fine" or "hangin in there" because it's just a normal day for me. I'm going to start replying "oh I woke up today, so I'll try to die by tomorrow, k?" and then laughing maniacally as you slowly back away.

Okay, I won't really, but it does flicker through my head occassionally.

I know I get frustrated and hand out lots of don'ts, so what can you do? I know a lot of you don't have any idea what to do. Just still be my friend. Yeah I can't go hiking with you, or to Lagoon or something, but you could tell me about the fabulous time you had when you went, or tell me about the atrocious time you had and I can sypathize with you. Or continue just sending me emails that made you laugh or touched your heart.

I guess what it boils down to is, don't try to overdo it because I'm sick, but don't cut me off because you don't know what to do because I'm sick. Just share with me about you're life what you're comfortable with or want to share, and respect my boundries the same way. One of the best things I've seen written by a fellow patient reads, "Don't assume I want to ignore my illness, but don't assume I need to wallow in it either, please."

I love you all more than you know, mostly because you can't read my mind and all you see is my frustration with this cancer. I do take to heart all the sentiment, and offers for help, and support, and everything else. I put a big sparkling smiley face under your name for each one and send it off to whatever good force you believe in and hope and pray that you get your reward for it.

So now that I've ticked off half of you, and made the other half cry, I'm going to call it a night. I'm threatening that I might erase this post because of the venting and because I don't usually put my feelings out there like this and I'm a little scared of what I shared. Again, =P so there.

Cheers

P.S. Thank you for the good energy you sent my brother's way. My niece is now papered and all and officially living with her daddy, her sister, and her (good) mom. The psycho ex had a moment when taking care of her daughter was inconvenient, so she got a burr up her butt and hurridly signed the papers and handed my niece over. And complained on the way out that now she was late for something fun because of the "inconvenience" of dealing with my niece's future. Sigh. I just don't understand people. Oh well, it's all for the good, and we are all very happy on this side of the line. =D