Saturday, May 31, 2014

EMPTY NEST

Pale, is the new alive! Pale is the new Tan!




Really!?? Does that look good? What's the girl in the top photo? A Tootsie Roll or has she been carved out of a turd?
"Oooh, look at my beautiful brown/red/body/boob! I just got back from the isle of Belize"
The girls above aren't far from the Yamanba Girls below.
___________________WHY?_____________________

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If you're looking for Dad - He's inside the computer, Mom!

It's interesting how there is a lingering emptiness when someone you love goes away. Even if it's just a few days. The routine is all broken up and the floorboards are much creaker and the whole house is darker. And there's no way to completely rid yourself of that slim thought of a break-in or that low dark thought while sleeping, of opening your eyes to see a stranger standing over you with a sledge hammer. I'm getting dark here...Ha! I think Dan and I've been watching too many Dateline Mystery's and way too many 48 Hours. I'm not really scared; but you know what I mean.


Oh my friends; I feel ashamed of how long its taken me me to write a new entry on my blog. I haven't been too busy. I just haven't felt up to it. Really it's been since December since I've written properly.

I've had some close calls in the early part of the year - that whole dehydration 7 day stay in the hospital.  And later my intimate meeting with the floor; where my front teeth explored the outside world by busting through my upper lip. I've been up and down on motivation. I'm a wild meter needle about feeling good or not feeling good.  I do get tired of never feeling "Just Grrreat!" Seems there is always some ache or some pain. It's just tiring!

I have to go way back to December, to the time my friends Suki Hawley, Michael Galinsky, Ron Liberti, and Madea had put together a gallery opening of my never seen collages. It was wonderful! I met some new people and had success in selling some of my collages, and that made me very happy. It's nice to be appreciated and to have your work seen and to have people take notice. What also makes me happy is great friends! Friends that have helped me so much by being there for me. Thank you!

Opening night.
My sister Stephanie was visiting from Houston - That made me very happy too!
Please come back!

I have these collage books that are made from magazines. I think it would be so cool to have real books made from them. Does anyone know how I get them published?
When I'd travel I'd pick up a magazine and with my glue, tape, and scissors ready; I'd collect things from that trip and while in bars, train stations, train cars and such, and I'd put together these books. As a whole they are pretty stunning. Check out the link above.

Then on January 18th my band-mates from Ruby Falls, Laura and Jennifer Rogers, along with Rebecca Gaffney put on a huge benefit for my ever dwindling cancer fund. And all of these great people played:

NURSE AND SOLDIER-(BOBBY FROM ONEIDA)

REBECCA GAFFNEY AND ADRIAN AUSTIN

AUGUST WELLS

THE ROGERS SISTERS-( REUNION SHOW!)

LOVE AS LAUGHTER

CRYSTAL STILTS

ENDLESS BOOGIE

DJs Bruno, Brad Truax, and Greg Anderson 

Thank you so much for that. The first of the year is so hard, thank you all for making it much easier. 

So for current cancer news, the drug Zelboraf that I had been taking for the last year or so has stopped working. So now I'm on a combo of Mekanist (I had gone to NY to try to get on the clinical trial in 2012 - it's now FDA approved) and Dabrafenib. I've been on this combo since the end of February, and I'll be getting my first Brain MRI and Full Body PET in the next week on June 10th. I might have some answers then. I can't tell if the combo is working or not. I certainly look and feel better (if I take all my meds correctly), but I still have lumps in places. I can feel them. Are they cancer, or just wacked out benign lumps? I have a lot of those too. What is what? I also have been having a lot of melanoma sliced out of my head, and lower back. And the large lump in my leg is a smaller lump - but it's still a lump. Could it just be scar tissue from the radiation? What also worries me is I'm growing hair again - If the drugs are working, shouldn't I be bald? I was getting used to that. Now I'm going to have to worry about hairstyles and hair color again. At least I have eyebrows! My very own personalized eyebrow shape, the one I grew up with, and they feel so good! I have lashes too! 

I'm very nervous, mostly about brain tumors. These nuggets are strangling my thought process. It's either the tumors or the drugs that are making me verbally dyslexic. The other day I said to Dan, " The clean is car." Poor Dan, I'm in a constant fog and never know what's going on. I have extremely short term memory. It's like "Hush Hush Sweet Charlotte" over here.  I do things that I'm not aware of; and remember things that haven't happened. Christ! It's really scary. If something is lost the first place to look now is in the refrigerator, the car keys just might be in with the grapes in the crisper.
So, I'm told that if I have one or more new brain tumors, I'm going to have whole brain radiation. What will that turn me into? I'm afraid, very afraid.




The thing is, that I feel myself slip away every day. Little incidences are becoming bigger incidences. I feel foolish when I get caught up in a false memory. I suppose the sad thing is; is that I can't trust myself 100%. If someone told me I did something wrong I would now tend to believe them, instead of standing my ground 100%. My short term memory is impossible to deal with. The assistant to my brain surgeon gives me these test, they're like alzheimer's test. "Remember these three words, House, Church, and Bird." then at the end of the test, I'm asked to recall the words. I would likely recall "Foot, Chase, Cheese."  I don't think I could recall much correctly now.  Well, you wouldn't know it, but it has taken me some time to write this. I had to read and re-read this many many time. It's been more than riddled with mistakes. I hope I corrected them all. I usually have Dan proofread it because of the wild mistakes I make. I'm just a drooling brain blob without Dan around.

It was really fun watching Dan, Brad, Greg and Tony playing on the computer. For the WFMU record fair. It was so good! I'd love to see the footage again. The WFMU Record Fair is on today, Sunday June 1st too. Get the info here: WMFU Record Fair

I think that catches us up for now. I'll do better in the future. I haven't done it yet - but I'm going to do my fohawk up in old lady silver this week end. I'll post photos soon.

Love to everyone!