Monday, January 3, 2011

Happy New Year 2011

Happy New Year – with ‘happy’ being the operative word!

I’ve been harassed a lot recently by my wonderful band of supporters for allowing myself to wallow in the depths of depression of late. . . the most recent being “may I remind you of how many friends you have and how many people care about you. You are way ahead of the curve, kid. Remember misery and negative thinking are optional; you have to chose them. So cut that shit out!”

So. I guess I have to cut it out and get on with things. I’m going to try a method that has worked for me in the past – I’m gonna write down what’s been bugging me, and hopefully get it out of my system that way, so I can try to move on with my normal grin and f* you attitude!

It of course, didn’t help that it was the holidays – and I’ve always been a Christmas junkie. And having graduated to ‘old fart’ status, with my friends spread around the nation, my Mama gone, and pretty much no one to play with, put me squarely in the doldrums. Even putting up lots of lights didn’t lighten the mood.

Then, of course there is the damned silver haired creature who crashed my world. I’m having a hell of a time getting that one out of my system and still cry at the drop of a hat. That’s getting really old. I keep trying to tell myself that he was one of those ‘angels for a reason, for a season’, as the email says, and that he did his job (getting me thru this cancer mess) and is on to other things. But that doesn’t really cut it.

Mostly though, it’s my body that’s messing with my head. Literally and figuratively. I’ll start at the top and work down. My hair? It’s about ¾” long now, maybe a little more in spots. My sweet doggie has been to the beauty shop to get her hair cut seven times since mine started coming back, and I still don’t have anything to even trim. And the color? Yes, I’m coloring it – because I’m just not of a mind to have two old silver dollar size dark sections in the rest of the light colored hair. But I guess I still have too many chemicals in my body, because the nice blonde stuff I put in turns a disgusting grey-green in about a week. I’m not good in grey-green.

I’m having the worst case of chronic headaches I’ve ever had (and I’ve had headaches every single day since that bloody auto accident decades ago). My eyesight has changed considerably, which is one of the ‘side effects’ of chemo – sometimes it corrects itself and sometimes it doesn’t, so there’s no sense in rushing out to get glasses so I can actually see, when it might just change back any day now. My skin looks like a teenager’s, also a ‘side effect’. I’ve never had yucky skin, and I don’t like it!

Then there’s the grotesque body. Scars truly don’t bother me, but this slash across my chest isn’t a ‘scar’ – it’s a disfigurement, a deformity. It’s knobby and lumpy and has big indentations, and flaps of loose skin, and a concave area. And the only thing that will fix it is more surgery. I’m not opposed to more surgery – what’s another session under the knife? But at this point in time, I simply do not know if it will be a possibility for me.

If you haven’t read all the crap that you received about changes to your medical insurance effective January 1st, you might want to do that. For me, on Medicare and Medicaid (because of my SS disability), chemo will have a $3400 out of pocket expense this year (which I simply can’t afford) and any surgery, hospitalization, etc will also have a $3400 out of pocket expense. So it appears that not only is the completion of my chemo treatment (Herceptin) in question, so is any further physical therapy (for the knee), and any surgery relating to this damned breast cancer (like plastic surgery to clean up this damned ‘scar’ or removal of the port in my chest used for the chemo, or minor stuff like reconstructive surgery). Just those little tidbits are enough to drag anyone down. (Everyone has money problems now, I know that, so whimpering about that is just plain rude, but it is still just one more big item on the plate.)

I’ve talked to more than 25 people so far in Medicare, my insurance company and Medicaid, and no one has a fucking clue what is going on. I had my chemo doc’s staff call too – they spoke to four different people and got four different answers. I’ve had one positive answer out of my 25 calls – saying that Medicaid will cover what Medicare does not. And the doc also found one person who said that. BUT, if we found only 2 out of 30 people who came up with that answer, what are the chances that a billing clerk is going to know what the hell is happening?

And my arm – the lovely lymphedema – I hate it, I hate it, I hate it. I’ll say again, if I knew then what I know now, I wouldn’t have gone thru with the surgery. Period. I’m not sleeping worth a damn – having to wrap the arm up into a 6 inch diameter club every night, and then find a place to put it and be comfortable? What a joke. It awakens me probably 7 or 8 times a night. But it works – the swelling is under control, as long as I do it every night. Then there is the daily compression sleeve and glove. With that glove on, I can hardly hold a glass, or a fork or knife. I certainly can’t do anything resembling handwriting – I might as well just put a sloppy ‘X’ down when trying to sign for something.

I’ve lost probably 75% of the strength I had in that arm, from having in bandaged up all the time, which frustrates me beyond words.

And I’ve commented before on clothes. In the summer, if I need to keep the compression bandage club on all day because of excess swelling, I can, because I just wear a tank top and it’s OK. This time of year, when its cold (freezing the last several days) I can’t do that – I don’t have a sweatshirt, sweater, or coat that will fit over the club. And even if I did, the sleeve would try to work its way up to my shoulder by the friction of cloth against elastic stuff. And it’s the same with the compression sleeve itself – there is nothing that will stay put over the sleeve. I look like a Bowery bum, no matter what I try to wear.

The knee is great! I’m thrilled about the improvement there!

So. There it is. I don’t think I missed anything. I’m sorry I’ve taken it out on you who care about me. It’s a new year, and it will get better, right? I’ll plaster a smile on my face and be more positive. I promise.

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