Join our hurricane street team

I've got just a few more queries pending.  Considering I haven't gotten so much as a partial request, (]let alone a full, offer of representation, publishing contract which could be a matter of years), I'm not likely to get one any time soon.  This book is NOT going to be thrown in the ocean.  I enjoy it, friends enjoy it, an exacting critique group enjoys it and so do 500+ subscribers who've heard the first three chapters.  I hope  that making this available to even one more person can make them feel alive…….and BE alive.  The proceeds are going directly to cancer research.

With the worst/best timing, Jennifer and john had already been planning to visit me so they've taken on the grunt work while I dictate my needs.  We're setting this up as a softcover, e-book, and audio book.  I'm not sure how much of the audio I can do but Will Ross has already volunteered to do some ass kicking.

Jennifer's got the video blog announcement on her computer and we're ironing out Lulu.com's counterintuitive formatting issues.  The book will be available for purchase at Lulu.com–in which case a greater percentage of proceeds will go to research–Amazon and it has the capability of being purchased for brick and mortor stores like Barnes and Noble, just get into the store and make the request.  I understand if you want to read the book first before putting in that effort so just email us and we can send a larger sample.

Jennifer  is the head of our street team and the go-to girl for those who want to help so we'll post her contact info ASAP.  For now, send anything to mine, she's got accsss to it.

If you have any promotional ideas, let us know!  Some ideas so far

- press releases in local (to you!) stores

-print out your favorite quote with the website address and stick it inside a book or games or movies etc  that might relate (7th Son, Heroes novels, X-men books or comics, Iron Man stuff, TMTNT, Blade

-Get creative–draw the characters, make a diorama of a scene, be eye-catching a fun, make pins

-Challenge people…..whose side are you on?  The doctors or the patients?

-Write fanfiction!  I'll feel like I've made it when there's slashfic on fanfiction.net ;)

-Go around videoblogging…. ask people  what they'd do if  their touch killed people but so did their reputable doctor?  What other questions could you ask?  Go for tings that are open-ended

-Send us your creations so we can post them!!

End of the line already?

During the night, I thought they were going to run tests.  Maybe they did on my bloodwork but they didn't wake me up.  I got the impression that they were going to start treatments immediately but I didn't see the doctor until this morning.  I'm not sure what changed–if they got more details on the CT scan or what.

He said they didn't have any treatment options.  That it's progressing too fast for the chemo, any form of it, to work.  They discharged me with hospice care.

I'm in shock and don't really understand the idea of just…waiting for it devour me.  On the other hand, I know I feel worse so know they're right about the chemo.  Still…….we've only tried two chemical sets and they were acting before like there were more that could be tried.  Why stop now?  It wasn't perfect but it was helping!

Jennifer has ordered me to get a second opinion or even third opinion.  She and John just arrived today on a trip we'd had scheduled a month or so in advance.  She's my one–foot-shorter twin who had stomach cancer.  It's really awesome to see them, to have friends around through this news.

They brought me home by mini-bulance and stretchered me up to the hospital bed now set up in my room.  Once things settled, Blazer was set free.  He leapt up–not onto the bed, onto my LAP!

1,000 Miracles from a Flock of Guardian Angels

I had an absolutely amazing time with Callie.  Last time I saw her, I was desperately trying to Not Be Sick and trying to enjoy every last second with her but I was coughing every breath and generally miserable.  I had some bad days while she was here, but also some good days.  We could talk forever.  Looking at her is like looking at a paralell life.  She and I have made some very different choices, but I could see myself going in her direction.  Especially with her kids–if I was to do the family thing, it would be like that.

She came bearing the most amazing project I have ever seen.  1,000 paper cranes–technically, 1,500 since my boyfriend went above and beyond the call of duty!  It's one of those concepts that sounds great, but I always think would never actually happen.  I mean, people are flakey and that's one THOUSAND cranes!  I don't think I could fold one single crane!!!   Thanks guys, for proving me wrong and being fantastic friends (:

Not only that, but she set up photo frames to hold special signed cranes.   She got the puppeteers from TMNT!!

And wow, J.C. Hutchins my favorite author!  He's been an absolute inspiration, especially now.  I still haven't gotten an agent for Lightning Spliced and obviously I can't wait around forever.  He's shown me that I don't have to leave the book buried under my bed.  I can share it, it can find its audience.

Speaking of fucked up, I’m back in the hospital

Cause it couldn't just be cancer, no it's got to be spreading horrible demonic cancer.  I thought I over-exerted myself while Callie was here but even with increased pain meds and decreased activity, I wasn't getting back to feeling better.  Within a week, I went from 30 min walks with Blazer to not being able to get to the landing on the stairwell.  I also was having this really uncomfortable bloated feeling.  It was decreasing but still really unpleasant.

We stopped by the oncology office to get some oxygen at home to tide us over to the PET scan results / likely changed chemo.  We talked to the nurse but had some extra questions and the doctor was able to squeeze us in.  My shoulder feels better but is definitely more inflammed and she was concerned about how fast my breathing changed, whether I had a blood clot.  So she sent us to the ER for a CT scan.

No visible blood clot but there's a bunch of activity around my liver, enough that they think it's shooting off crap (yes I'm articulate about my medical terms) which is screwing everything else up.  Of course, this is really shitty news in the disease's already shitty progression so the doctor had us talk about my wishes / extreme techniques vs. quality of life.  

They're going to run more tests and work on treatments to hopefully get me turned around.

Just Get it Over With

As terrified as I am to find out exactly what's wrong on the PET scan, I'm at the point where I KNOW something isn't working.  So I want to just get it done and get the new treatment started.  Of course, through some stupid billing confusion they cancelled the scan on me……after months of them sending the bills for us to hold onto and never denying treatment, why do it now??   We got it sorted so I'm going today.  I've really gone downhill the last few days.  Increases in pain meds are never enough.  It's so scary how fast it happens.  On Monday, I could walk Blazer for thirty minutes and feel great for doing it.  Last night, I couldn't make it up the stairs. 

I hate that I need a new treatment already.  This is completely retarded.  I took such good care of my body from eating right to driving, always valued my life as a gift and treasured each day.  I'm not learning from this, I'm just becoming bitter, resentful and angry.  The world is a fucked up place that the irredeemable druggie assholes that have stormed through Callie's and my lives are living their own just fine and I'm the one stuck struggling. 

PLEASE don't send me stories about how your friend/spouse/relative suffered through the hell of treatments and torture of disease only to not make it.  I know you want to show how you understand but that is THE LAST thing I need to hear right now.  I need a light at the end of the tunnel, I need to know I'll have at least a few years of remission.  I hate that there's so much I want to do in the world, right at my finger tips but I can't do it because my stupid body isn't well enough to handle it.  I hate RELYING on people.  I hate that I wanted to help Callie with her luggage but I can't do it so I had to ask Chris to.  I hate to have to ask for stupid little things like, get my toothbrush, get my food.  My independence is one of my most treasured qualities and it's stripped from me.  I hate that people have been so kind to me but I'll be too out of it to keep track of addresses to send thank yous.

Furry therapy to the rescue!

Blazer arrived this morning (:  He's going to need some time to adjust but he's doing well so far.  He whimpered at the door on and off and hasn't been interested in any treats.  I took him out for a walk around his territory and then later on, we went down the street and happened to meet up with Tucker, the other Bearded Collie of the neighborhood.  They gave each other a good sniff over.  We also ran into Bailey, the Golden Retriever, who was bringing over a welcome package (;   Bailey's a frequent visitor so it was good to see him and Blazer happily checking each other out.

He's very different from our last dog, Maggie the Spaz.  I know she missed us when we were gone, but I think she would stll tear off with toys and take treats from anyone!  I'm really excited to begin training with him but I've got to wait for him to get more acclimated–kinda hard to reward him with a treat if he doesn't want one.

He's bonding pretty well so far.  He follows me from room to room and spent some of the afternoon laying on my feet.  He's also made himself at home on the couch and on the rug in my bathroom.  He responds well to sit/stay though he's pretty sneaky and tries to test me.  If I give him A Look, he'll get back to what he's supposed to be doing.  He cuddles up to me when I groom him…..good thing because that coat requires a lot of attention!

He needed to go out pretty early this morning but was restless when we came back in so I let him out of my bedroom while I went back to sleep ;p  then when I got up for real, he came back to my room and gave me some kisses (:

Pain relief is bizarre

The bears are multiplying!

Alex-the glow in the dark Wish Bear

Chemo-the little white bear that fit in my front hospital gown pocket

The New Zealand Relay for Life Bear and Sweater Bear are unnamed so far as I know………………….=O

Pain relief is bizarre.  With my shoulder site, the painkillers make me feel better but I still have limited range of motion.  Without painkillers, my back feels like I'm hauling the Eiffle Tower–I have trouble getting up, staying up, walking, etc.  The muscles just don't work.  But with painkillers, I can suddenly do anything as if there's nothing actually wrong.  We're getting closer to managing it, taking the oxycotin 3x a day instead of 2 is a HUGE help.  I was worried about finding the balance between pain relief and zombiefication but I was much more of a zombie while in pain than when on painkillers ;p 

Plus it's SO MUCH easier to keep a positive butt-kicking attitude when I feel better (: I went to yoga at Sunshine Mansion and talked to another lady who has had to switch chemo cocktails a few times before finding the one that worked for her so that makes me feel less traumatized by the idea.

My NSFW mantra:

Hilarious beadwork helps ;)  Laughter promotes the creation of cancer-fighting B and T cells….when I opened that package, I definitely had a spike in the little warriors.  Orin made it for me and I can't ever just mention her, I've got to show off her fabulous creations.  All of her art bursts with unbridled passion.

Ohoh and Chrissy sent me this card….

…I've never seen anything like it, turns out the creator also wrote a comic book about her on-going battle with breast cancer.

They say money can't buy happiness but while presents aren't a cure, they really do make me smile from adorable cards to board games ready to provide hours of fun the next time I drag Tina over (:

I know you all would rather see pictures of my new doggie.  Trust me, I would too.  I pine for Blazer!  I can just see him out of the corner of my eye as I go from room to room in the house….  He'll be here Saturdaay, can't wait!!

Two steps forward, one step back onto a nail

'OW' sums up my life right now.  My back has declared war against me.  Not too long ago, we were getting along okay for once.  It's scary how fast my body parts can crash downhill.  Lying down/getting up is excruciating which is really freaking annoying after having my mobility screwed up by my breathing.  It doesn't help that my cough from hell is starting to come back.  In addition to the meaning being terrifying, coughs are like whipping my back with a 2×4.  Plus I've got that arch of pain in my diaphgram that this all started with.  

So, we called up the doctor's office and the nurse practitioner had us come in.  'Well, no wonder you have back pain, the last PET showed there was more cancer there' 'Wait, what??'  Somehow I totally misunderstood my doctor because I thought she said the stuff in my spine and abdomen was gone.  Apparently not, my spine is like my liver–it shrank but there was more of it.  She also said that just because there's new pain doesn't mean it's new cancer, that we need to give the new chemo time to work.  She's delt with this before, I haven't…..but that's a hard concept to wrap my head around.  Why would I feel SO BAD if it wasn't something getting worse?  

She prescribed new pain medicine–long acting oxycotin instead of short-acting oxycodone–why was I taking short-acting stuff at 12 hour intervals?  I don't know :P  I managed yoga with major major accomodations and my massage therapist treated me to a home massage =O  

Unfortunately, a few days have gone by to show me that these pain meds aren't enough or the pain is getting worse.  My pain in the morning was an 8, now it's a 6…..still incredibly uncomfortable.  Daytime pain went from a 6 to a 5 but it goes up to 7 or 8 as I get closer to dose time.

I've been watching through X-files and got to the black cancer and Scully's brain tumor.  btw, when I think of tumors I think of little mushrooms popping up on my organs haha.  Anyway, the show is now not quite the good distraction it was before :P  Plus I really need COMEDY.  I love Scrubs but it's hard to watch for the same reason.  My mom called the doctor's office so hopefully they'll get back to us soon and then we can go see Despicable Me!!

Treasure the good news when ya got it

My blood counts were so much better this time that the nurse practicioner was like, '….did you get a transfusion??'

I lost some weight but considering the antibiotics I was on were making me vomit that's not really a surprise.  Back to stuffing myself silly!

We went to see Blazer (3 yr old Beardie) and fell utterly in love.  I didn't expect that.  I'm pretty picky–I worked at a pet salon with over a thousand dogs and there are maybe five that I would take home.  He's PERFECT!  Lucy, the breeder, is going to drive him to us but she's going to Canada next week so we may have to wait until she gets back.  I miss my doggie already!!  I can't believe I forgot to bring my camera…once he's home and I can get pictures I'll write much more about him (:

I got my MASSAGE!  My back is crying tears of joy and my massage therapist said I win the prize for softest feet.  I guess those moisterizing socks Christina sent me really work!

As you can see, I got some gorgeous artwork from Ben Hummel whose work you can also see over at Will's sites 118 Migration and Undead Air.

I wrote half a chapter of The Deep Within!  Now that my back is doing better, hopefully I can get in some editing and finish that chapter up so I can force it upon my fellow writers over at Chimera Critiques.

I looked up how to play Spit–I remember really liking it, but being horrible at it, when I went to Learning Plus one summer.  Chris and I played a bunch while he was here this weekend.  Any game that lets me yell SPIT while slapping stuff is awesome.  PS Chris was here this weekend YAY YAY YAY

My grandma sent me the most gorgeous pajamas I've ever seen, I feel like a rock star at the spa….bring me my Evian~

My glamour

I never read the How To Be a Girl book.  I didn't even know girls plucked/waxed their brows until I was in college!  I just thought I was lucky enough to have giant caterpillar eyebrows.  I also keep busy creatively and was probably a little snobby, thinking I was too smart to 'waste' my time on make-up.  The mentality serves me well–losing my hair is more fascinating than anything.  

But I have to say that getting scarves and shopping for wigs gives me a different perspective.  I'm not thinking about an effort to look good as being potentially shallow anymore, it's an indulgence but it's FUN.  I went to a 'Look Good, Feel Better' workshop at Sunshine Mansion where I got a giant goodie-bag of make-up and spent two hours learning how to use it.  It was nice.  I'll never use all that make-up in a million years but the process was weirdly comforting.

Wigs are even more fun.  I've always loved having purple hair but the dyeing process/mess and inevitable job issues are more trouble than they're worth so I've been wanting a purple wig for years!  It was only $10 but I angst about spending money on non-essentials.  Now I have an excuse ;)

It actually looks way better in the picture than it does in reality unfortunately :P  The quality is not too high but eh, it's just for fun.

But, I got a free blonde wig from the workshop which my mom is considering dyeing dark blue =O  We just have to figure out the best way to do it.

Of course, we did get a REAL wig too.  After about a hundred million hours of shopping online and in a variety of stores, we narrowed it down to a few options.  The most popular was a super cute, super stylish one.  If we could have gotten two, I would have gotten this one as well.  It was totally not me which is really cool.  I'm not stylish at all and it looked GREAT!

But I figure if I can only have one, I should get one that feels more 'me.'  I'm a long-hair type of gal and I really wanted to get something with red in it.  I was really tempted to get this next one but my mom thought it looked too fake because of the red.  Also, one of the salespeople mentioned that if I lost my eyebrows I might want a wig with bangs to hide/soften out the drawn on brows.

I still think the red looks great!

And now the ACTUAL wig we FINALLY decided on.  By the way, we bought it from Wear Hair for You and Laura was amazing.  She could tell by looking at me for five seconds how I normally wore my hair.  Within five minutes, she'd guessed two of the wigs we had narrowed our choices to.  We probably should have gone to her first but my mom and I are very meticulous about choosing something to spend money on.  I know I wouldn't have been comfortable buying something without having tried on those hundred options that didn't work out.  

Some wigs looked great on the heads but awful on me, and some looked awful on the heads but great on me….plus it's really hard to get past the color hair.  I tried on blonde wigs that probably had great styles.  There was actually one, last wig we almost got.  Too bad we didn't get a picture.  It had real nice layering but it wasn't monofilament so the part looked chunky and fake.  I'm tall enough that no one can see it anyway so it probably didn't matter but it was a blonde wig…..

Anyway, without further ado………………..MY WIG!