Tuesday, January 24, 2006

The fat lady is quietly singing

Hey Howdie,

This poor neglected blog, I have been being nursey and not a writer, and it shows. Actually, I am here to end my blog, at least for this space and time. My Hep C goes on, making tomato sauce out of my liver, my life goes on, MitchMAN is getting better, Doc goes on, she is excelling at doctor school, I have developed a crush on Vincent D'Onofrio and I find new gray hair every day. But this next phase of my life feels fairly solitary, too scary and demanding to commit to blogging. When I start treatment again, my only choice is Infergen and Infergen is triple strength Interferon. Now I believe Interferon is barbaric, devasting and a cure worse than the disease, so you can imagine the bad dreams I am having about Infergen. My commitment to trying to rid myself of the dragon has waned somewhat, directly correlated to how much more I research Infergen. I may not be capable of this. And for a "bitch with bullets.....balls to the wall" girl, to admit I am too weak to try something can be devasting. So, while all is well here in Oz, I am taking a break from my blog, and walk, talk, live and breath with the idea of trying something WORSE than interferon. I do not know this outcome. But then, do any of us know? I am comfortable not knowing right now, it will come to me. Til then, you all take care, and Kris, I think of you often. And then I get a bit sorrowful for what I know you are going thru. You be brave girl. I be not brave...yet. Love.
Jackson

Monday, January 23, 2006


Look at those eyes, there is a whole world there.

Monday, January 09, 2006

"Kittens gone Wild!!" New photo shoot

So it's been a long winter and not even half over yet, we all be getting a bit crazed around here. The kittens are crazed because they are growing up, Alex is just crazy, with his geezer look going on and I am resting up to begin to go crazy. MitchMAN caught pneumonia Christmas week, this is not a good thing for a man recovering from lung surgery or for his nurse either. Raised my anxiety level a bit and got him good and cranky. Not sure what is up yet, we haven't seen the 4 doctors necessary for a true diagnosis yet, but they all make me nervous, they read his tests and then listen to the lungs and look down the throat, all the while my urge to yell at one gets worse and worse. Mitch is better now, this is the first week of January, I would like to go for a month without purchasing a prescription or laying awake at night, counting his respiration and listening for lung type noises. I am overly dramatic today, he will get better, just takes time, but we used the latest new scary antibiotic this last time, if he gets sick again, he be eating green moldy bread. Drug resistant pneumonia is more common than most of us know, but most of us don't hang out with lung doctors either. Other than that, things be cool here.

Everyone liked my soap this holiday, which is great because that was all they got from me! Now I am in the basement, throwing the clay around and making bowls and vases. There is always a learning curve going on and I'm right at the start of the curve, but it keeps me busy and I love that. I get more and more tired walking up the stairs, but the rewards are great so I keep puffing up and down. Wish I could think of someting funny to say today, but I can't. I had to shave one of the kittens tail, she had some skin irritation going on, that was funny! But she is fairly pissed. I guess all I can provide today is my funny photo, which I love very much, but also find disturbing for a moment. Too much cold, not enough sun. One thing about it, this too shall pass. Take care.
Jackson

Thursday, December 22, 2005

All I want to say this holiday is "Thank you" to the gods and the earth for my children, Doc and Mat, and for my husband, MitchMAN. All else is just the stuff of every day life and some advertiser convincing me that I have to spend a million bucks to be happy. I don't. I just look at these faces, my family and I know I am the luckiest person alive. Wish you knew my family, they would make you laugh, cry, wonder in amazement and you would understand. Hope you have faces of love and wonder this holiday too.
Jackie

Wednesday, December 21, 2005

An ice storm hit here last night, about 20 minutes after Doc arrived from Seattle. This is a good thing, she was safe and sound, here at home for the holidays. But sometime in the early morning, a car sideswiped hers, not too bad of a dent, but it could have screwed up her holiday bad. We called the police and the hitter had left insurance info and the insurance company has already called, so all is well, better than well, actually, Doc says she will drive this car til it dies, so she is going to save the money they give her to fix it and use it for school. Small sweetness from bad things, we are all okay now, but it was like a zoo this a.m. Cops here, the poor lady who did the sideswipe was totally devastated, I as so worried about her I think I will stop by and leave her Christmas flowers. It was not her fault, there is an inch of ice on the road and this poor lady was just trying to take her son to school. Ain't life crazy. Talk about crazy, I have been talking milk thistle for my liver function and Hep C and you won't believe my blood work. My liver function is down to normal, now I think I want to have a big party about this fact, but I have to see the doc first, I am so afraid to find anything good about Hep C, I just know he will tell me this is not a good thing as it messes with viral count, disease progression, who knows what. He can be a real asshole. But news flash for anyone, milk thistle brought my liver ALT down from 220 to 40 and how the hell can this not be a good thing? I still have hep c and am a little concerned that as my liver function got better, I got much more fatigued, so we will hold off on the party till the doc tells me what is going on. I think this will be a bittersweet holiday and I can make it much sweeter with just the right attitude. I have a present for all of you, some advice I read somewhere. I liked it.

Her advice: (she is a surgeon) "I was in the middle of a surgery with the most talented surgeon I know, John A Ryan Jr., and he decided I wasn't giving it my best effort. He barked at me, "Hey!" You're doing one thing right now. One.....thing! So do it right". I never forget that advice. You're doing one thing now--living your live. So live it right: Wear sunscreen. Never smoke. Get enough sleep. Exercise four times a week. Always be kind. Never lie. Laugh often. Do not tolerate less than you deserve. Let grudges go. Dream big. Remember that love matters most. Call your mom". Okay, I'm going to call my mom, then walk on the treadmill. And always, always dream big. You dream big today too. Happy Holidays.
Jackie

Friday, December 16, 2005

A winter pecker

This guy lives in my back yard, I asked Santa to bring me a bird feeder for him, but then I realized he eats bugs in trees, so unless Santa can bring a new telephone pole, I ain't going to be able to feed him this winter. I will do a little research and see if he eats suet or whatever the nasty stuff you can buy that has fat and some kind of bug guts in it. My pecker is wonderful to watch, but he made me think of my new cats today, the neighbors cat tried to mix it up with my pecker and the pecker won. I have decided for the sake of the pecker and the cats that my kitties will live inside, always, and their whole world will be like mine, the inside of this house and the world that can be seen thru the windows. Because both kitties and sick old ladies are safer in the house. I am kind of depressed today, I had some family here for early Christmas, did the whole nine yards, food, tree, decorations, it was beautiful, but made me sick for two days afterwards. I slept like 22 hours straight, I did not like this much, my hep C is much more evident in my life than it has been for a long time. But the real bitch was from the other folks here during the celebration, I have a brother in law I have not seen for a while and he would not give me a smooch, you know, the safe, closed lip kind you give male relatives. He would not, kissed me on the cheek, MitchMAN noticed it but tried to play it down. Made me sad. A few weeks ago, we had company too, one of them did not want to use a towel that was hanging on the rack in the bathroom, asked me for a clean towel out of the closet. I explained the towel WAS clean on the rack, but they pressed for one out of the closet. Later, I learned, they had heard me talking about my dry skin (one of the symptoms of early cirhossis) and decided the towel they needed better damn well be clean. Made me sad. So between no kisses and clean towels and scary fatigue setting in, this will be my winter of Hep C, I can tell already. It is my goal to live thru the snow and cold and bad liver, when spring comes, I will plant again and forget this winter and this tiredness and shortness of breath and I will be brave enough to start treatment over. I have made up my mind. There is no treatment so bad that I will not do it, I will let you know what Doctor Death throws at me, I think it will be Infergen, triple strength interferon, triple the fun, triple the depression and nauseau, triple the fatigue, triple the fun? I care not, bring it on. I have this winter of Hep C to prepare and kittens here on the keyboard to teach to type. Plus, fuck, you would be impressed at the pottery these hands are turning out. I will take some pictures of a few pieces and post them, when I get brave enough. There is always such a vulnerability to show art to strangers, but I will anyway. Soon, for the pottery is pouring out of me daily and I am happier with it than I have ever been. Strange gifts from god, feeling sick, but feeling creative, and I can hold the creations in my hands. Take pictures of them too. I will show you soon. Hope your kittens are typing better than mine. Have a wonderful holiday, I love Christmas, I celebrate for two weeks. Celebrate yourself too. Later.
Jackie

Monday, December 12, 2005

Say Hello to Christmas!!

This is Peeps, my Christmas present. Why do I have a picture of my Christmas present so early this year? Well, MitchMAN saved Peeps and her sister from Animal Control and Peeps does not tell time too well. She couldn't help being ready for a home a little early and I was more than ready to have Peeps right now. Her and her sister have discovered they love Christmas, the tree, the lights, the decorations and Mitch and I have discovered they are very intelligent cats! They can read the newspaper and can also type on the computer keyboard, but will take some more time for them to learn to spell correctly. Actually, one of the kittens is for Doc, she is finishing this semester of medical school and is very frazzled, but will come for a week or so to a new kitten. Now, Doc is the ultimate cat person, she is an intelligent, sophisticated young adult, living in Seattle, going to the right clubs and all, but this woman loves cat calenders, cat cards, cat keychains, all the stick-a-spoon down my throat sweet things that people can do with kitties. So she is going to love Peeps or maybe her sister, I do not care, Doc will bond with one and the other will stay here with me thru this long Hep C winter. Peeps sister is a bit more agressive than Peeps, what you cannot see if her sister, terrorizing my big dog. I call her "Painkiller Jane", after a comic book character, but I am most positive that Doc will rename both kitties. It does not matter to me, but I ain't going for "Trixie". Don't ask me why, but cats deserve more dignity.
Hope your day is dignified. I am getting sicker, scaring Mitch a bit, but it was just inevitable to me, re-treatment is coming soon and if you want to have bad dreams, look up the medicine "Infergen", that is what is in my future. I do have some control tho, Infergen will come with the spring, this winter it is me, Peeps and Painkiller Jane. Happy Holidays, I gotta go, just heard a plant crash.
Jackson

Thursday, December 01, 2005

Sticks, stones, snow and berries, OH, MY! Why won't this thing print my photo?? Well, imagine snow on a bush full of red berries.


From the photo, you can guess what is going on around here, snow, snow and more snow, but on this first day of the snow, everything is quite beautiful, clean and I'm digging the view from my front window. The swearing about the snow starts as soon as I have to go out in it, gotta dig out the old doc martins, big black boots to tromp in the snow with. I need to get my doggie some snow shoes, he went out and slipped, came back in and slipped, down the stairs actually, which scared the hell out me, he is a grayhound with long skinny legs and I feared for those skinny legs, but he is okay and I do not have to go outside yet, so all is well and I'm watching the entertainment outside as it turns from earth colored to cloud color, fluffy and white and very very cold.

The birds are pretty excited about all the activity too, they are flocking around the bird feeder, fighting over the last of the sunflower seeds. Tomorrow is my birthday, I asked for another bird feeder, so that more birds can eat, I'd like to turn the back yard into a kind of Denny's, you know, lots of food, lots of places to sit. I've been a little scared lately, it has been hard to even walk up and down the stairs to the basement, usually I can make two trips before the smashing fatigue sets in, but maybe my fatigue is from bounding up the stairs lately, instead of just walking. MitchMAN bought me some fine red clay for my birthday, the clay was like the key to a floodgate, pieces of pottery are pouring out of me and the brain is filling up with more ideas. So I work in the basement and when something goes really well, the clay gods smile on me, I bound up the stairs to tell Mitch. Wow, by the time I hit the top stairs, I gotta catch my breath before I can brag, guess Hep C has to have a piece of me, no matter how happy I am. I see the doctor this month, so I am not worrying about it, sure there is something to be done about it, today, I am watching snow and playing in clay. What more could I need? Well, to be healthy again, but hell has not frozen over yet, so I occupy myself with more attainable goals. Hope you are attaining your goals and that all your fallen clouds are just puffs and fluffs of snow. Later.
Jackie

Monday, November 28, 2005

Bitter angels of our nature

Something I heard in the past few days has been hanging around with me, buzzing in my head like the last flies of winter. Do we embrace or fight the "bitter angels of our natures", meaning, I think, our conscience, our internal compass that tries to point true, but is sometimes spinning out of whack from magnetic forces we have no control over? I just talked to Doc, we talked for about two hours, this will play hell with her cell phone minutes, but it was a good talk, intimate and I felt like I was hearing her soul, her truest thoughts, some of them were hard for me to hear, the particularly prickly words were about my reactions this past year to the inevitable turmoil she has experienced, in fact, that we all experience at times. My fear tinged my words to her, she heard words of unnacceptance, but it was one of my "bitter angels", screaming about how frightened I was for her. Today, that particular bitter angel is silent, I have come to trust that Doc is smart and strong enough to not tolerate anything that would harm her, but smaller, less cynical angels are singing to me now, words of concern, words all mothers have felt and heard internally. What a tangy gift motherhood is, to get tangled in a grown humans life so much, to hang like suspended from a web, unable to be free of it, but not wanting too either because of a concrete connection that time, nor wind, nor nature can dissolve. So I am being bitten by this bitter angel that was so frightened and spoke unclearly, it was an angel in disguise, thoughts of love and concern came out of me, but when sent on the wings of the crabby angel, left my daughter feeling dis approved of. Shit. Thank the other angels from today for the chance to tell her it was not dis approval, but fear she heard in my angel's breath, perhaps Doc heard me today and is healed. It is the holidays, the time of more miracles than any other time of the year, I am hoping I deserve an angel bearing miracles, even if the angel is a little cranky. Cranky I can understand. I wish you all angels of sweet disposition. Later.
Jackie

Wednesday, November 23, 2005



I liked this photo, folks on the shoulders of more folks, all working together for a common goal, reminds me of my family, except for the working together part. With five brothers and sisters, all married with kids and grandkids, our family gatherings are really freakin large, I think of gathering during the holidays like the rain forest, there are levels of activity going on, varying by altitude. Big guys drinking a few beers, talking stuff, middle level is usually my sisters and I, talking food, then another level, sort of under the canopy, consisting of about a thousand kids, some talking, some just learning to toddle, and I think that the short person level is what really keeps the other taller levels alive, the floor at my sister's is teeming with life. I must have 20 grand nieces and nephews, and about 15 nephews and nieces, makes for a grand holiday tho. The pack mentality takes over, everyone becomes a mother to any child within reaching distance that needs food in the mouth or the nose wiped and any teenager has to take crap from all the adults about school or women or whatever. I love the pack mentality, I love the rush of all the kids around, but I gotta tell you, I get really really tired from the holidays. My age shows around all these children, having children is for very young people, even then, I do not think these wonderful parents understand what a monumental job they are attempting. I say "attempting" because we all know raising kids is just a crap shoot, hope for some good luck and do the best you can. So I'm loving all the little ones and admiring their parents and wishing the parents could have my perspective in the middle altitude of this rain forest, plus maybe I will ask god to give them all a little bit more sleep, plus those moments when they can relax and reflect on what a wonderful thing they are doing, raising these little people. Having Hep C has put me in a permanent state of reflection, but I'm loving it, I have heard folks say that this disease or this disability was a strange blessing, this is mostly because you have to develop the ability to "reflect" on the life going on around you, otherwise, I would spend all my time with my head up my own ass, feeling sorry for myself, and the view from that altitude sucks big time. Hope your turkey day is a walk in the rain forest and you remember to bring your reflection muscles with you. Have a good one.

Wednesday, November 16, 2005

Winter hits some of us very hard!!

In my last post, I talked about my photo safari, MitchMAN and I tried to go today, but work called him with some earth shattering issue and the safari is delayed a few days. I'm feeling fine with this, but still got a photo jones, so I take a walk about and realize I have yellow chrysanthamums, that isn't spelled right, mums, i got mums out the wazzoo in my front yard. There are a few of them in a vase on Mitch's desk/dining room table, but the flowers have been inspired by the cooler weather and there are a billion of them, bright yellow, and this is the kicker, they smell wonderful! Not that kind of woodsy mum smell, but very sweet and I'm liking this a lot, when this butterfly stops by for a portrait. I'm totally jazzed at first, I love to photograph small, unsuspecting bits of beauty like this, but looking at the butterfly closely, I see he is in a state of grayness. All gray and fuzzy on his body, but the wings are still dazzling in yellow and black, I'm kind of scared for the little guy, does he have some sort of virus, have I discovered Butterfly Hep C? I think not, but what I do think is kind of poignant in a way, a bit sadder than even having Hep C. I think this guy is in the last stage of his magnificent life, gray hair and all, stopping by my mums to rest in the sun and give me one last gift of a perfect photo. I'm feeling lucky today for this gift and remembering there is a beginning and an end to everything, just a twinge of sadness that it had to show up on my mums on a sunny day, but then, when I think about it, to experience the inevitable end on a sweet smelling mum, still so vivid and bright, full of color and eye candy, well, who can bitch about an end like that? Later.
Jackie

Monday, November 14, 2005

So it's been six weeks since MitchMAN's surgery, today he's off to work for half a day and the first thing I do is blog. I'm happy about this, but realizing that my photography collection has become woefully thin and for someone who copes with a chronic illness like Hep C with photography, among other things, I'm thinking this is not a good thing. So I'm planning an expedition, a photo safari thru the desert here, along the river, but it has become freezing ass cold since I wrote to you last. So I'm in a flannel sort of mood,even found a few of my flannel shirts from last winter, but couldn't find a flannel kind of photo, this photo is called "silk", it was the closest I could come to fabric. Flannel does not photograph well, which I'm sure is an issue for someone, but not me, I'm going after the bare trees and piles of leaves and the bazillion geese that fly thru here going north this time of year. Perhaps tomorrow will be a good expedition day, so look for some stark, dreary pictures here soon, winter in the desert can be so hard on the eyes. Cept when it snows, but as much as I like to put pleasing photos in my blog, I am not hoping for snow yet, although snow does make for truly beautiful pictures.

I have entered the world of herbals, which way off the subject of flannel, I know, but still noteworthy. Having already used my thistle picture, I wish I could repost it anyway to underline how I feel about herbals, milk thistle to be exact. Milk thistle has been used by the Chinese for a thousand years for liver health and I figure, who am I to argue with a lot of Chinese, so I'm taking milk thistle and son of a bitch, after a month, I do not have any liver pain any more. My fatigue is about the same, but to take a deep breath and not feel the constant ache in my upper right quandrant is quite stunning to me. I go next week to pick up lab orders for blood work, I have a renewed interest in what my AST/ALT will be, it has been rising faster than the price of gasoline, so if it has stabalized, well, call me astonished, because I always poopooed herbals, except for a little chronic weed now and then. From what I can read, it takes about three months for the full benefits of milk thistle to show up, so I will let you know. Believe me, I will be watching those numbers like a hawk. Now milk thistle is not cheap and it caused me some mighty prickly belly aches for the first three days, but now my gastro seems to have become accustomed to it, except for the great desire to consume popsicles in the middle of the night. Cheap price to pay for a healthier liver, I guess. There is another herbal I will add to the milk thistle as soon as I get over the sticker shock, something called Astrlgrass or some variation of that name, good also for the liver. I need to research it more before I start swallowing it, at least learn how to say it, but I hear from good sources that I should also be consuming it. So here I am, dabbling in herbals, trying to be cool in the health food store, which really is very hard to do. The health food store always has the most colorful folks in it, just call me colorful now and watch me consume the herbals. I'll let you know how this all works out, I'm liking that idea, that is what I love about blogging, it is a connection to the future. Even if there is only three of us reading it. Which reminds me, someone I love very much sent me wishes of love in response to my whining about trying to get my meds straight so I could start tx again. She has gone back on tx again herself, Kris, someone smart once told me that those of us who battle the dragon more than once truly learn the nature of the beast and I have always remembered that thought. The dragon is like the fire that makes steel strong, and we're the hammered piece of metal, it is a fight every day. Soon, fighting it is all you know, but the warrior mentality really puts a spin on life, at least for me it has. I can whine when I want to and be silent when I need too, and am thankful every day for the smallest stuff that used to slip under my radar. Strange gifts, but I think I look better as a fighter. Victim is such a fucked up term. And Sue, anything you want from me or my blog is yours. Please post a link and I will put it in my next blog, but remember, I use bad words sometimes. Just call me rascal and then put in a disclaimer, because I do love to swear. I'm going to go make plans for my safari, along with doing the dishes and laundry, the life of a housebound blogging gray haired swearing warrior is busting full of excitement today. Hope you all got excitement, if not, try swearing.
Jackie

Tuesday, November 08, 2005

Hey, I found this image floating around and had to put it here, all the words I usually put in my blog are hanging around somewhere near the top of my head and I can't seem to catch them in any righteous order to put down here. I have been doing my meds just like my shrink wants me too, massive doses of anti-dees, the resulting brain fog, on top of my already hammered memory has interrupted my ability to compose anything. Interrupted my ability to find my keys, to remember the bathtub is running, you know, the basics of life. Mitch started driving after white knuckling with me for the last three weeks, even driving is a little more dangerous for me, but my shrink promises a clearer mind as soon as I grow accustomed to the meds. Well, I have heard that one before, but I am taking a leap of faith here, which for me is unusual, being a very comfortable cynic, so I am here, words floating around my head, not being put down in this blog, I have lost my cup of tea and forgot what chores I was going to do this evening, but I can remember to tell all of you to take care. Especially you, Kris, hope you are doing okay starting tx again, it makes me feel so bad for you I can't even find the words to say, except Hep C is a mutha and won't we all be leaping and jumping for joy when the miracle cure comes out. I will. I live for that time. In the meantime, I am doing my meds and forgetting my name becausse that is the only way I can start tx again. Wow, what a trade. Oops, there's that cynic again...but I love it...unless it becomes unattractive. I will search for my words. Talk to you all then. Hey Bruce, I'm still eating the licorice, but have switched to red!! Later.

Saturday, November 05, 2005

Pink Cadillac and power

Puleeze, that is what someone will say when I say, I like Springsteen. But that is okay with me, I don't like all his music, I never knew I liked this song until today, I was cruzin to Starbucks and this song popped on the radio, filling up the front of the truck. Now, I'm liking it because at first, you think of a pink cadillac, crushed velvet seats and, how girly can you get? Which evokes a lot of thoughts about lipstick and struggling with changing a tire, sort of feminine softness that some people confuse with weakness. But I'm listening to Sprinsteen and he's singing this from a viewpoint of mystery, he has less power than this chick in the pink cadillac. She's got the power to make him curious, probably drive him nuts, all the while she's driving this pink cadillac, velvet crushed seats and mysteries in the back. I'm liking this and the song is still running thru my head, 12 hours later. Ain't love grand. Hope you all have had a mystery or two in the back seat, makes life worth while.
Jackie

They say eve tempted adam with an apple
Man I ain’t going for that
I know it was her pink cadillac
Crushed velvet seats
Riding in the back,
oozing down the street
Waving to the girls
Feeling out of sight
Spending all my money
on a saturday night
Honey, I just wonder what you do there in back
of your pink cadillac

Wednesday, November 02, 2005

Licorice and blogging

There must be a billion blogs going on right now, populating the Web with words, thoughts and insights, ranting, raving and secret thoughts and desires from a million people. My friend Bruce, from Israel, says a blog is a living thing, I'm believing him, and my blog is going thru a kind of hazy time right now. I have much less time to think profoundly about my life and your life and humanity in general, what with being the perfect nurse for Mitch and the perfect secretary and the perfect chauffer and the imperfect non-smoker, but I know that the time will come back, to think ponderously about my upper right quandrant liver pain and Hep C, doing retreatment and the horrific panic accompanying the drugs, giving myself shots in the belly and not being able to wear jeans anymore and all the other shit that Interferon brings with it. But for now, I have just enough time to eat some licorice and twizzle it like it was a cigarette.

So this one of the billion blogs is full of licorice, but fairly empty of any meanful words. But then, my life is like that sometimes, so I'm feeling fine with it. Just wanted to say hello in between the licorice and the liver pain. Hope all you got going on is licorice. Take care.
Jackie

Sunday, October 30, 2005

Cowboys and Indians

My son got shot in the ass last night by a cowboy.
I just heard about it, when I got the call, do you have any idea how sick, frightened, shook-to-the-bone I was? I dropped everything, rushed to his house, only to find it empty and dark. By this time, I was frantic and I don't do frantic too well. I was ready to stop at all three hospitals, one at a time when I got a call from my son, finally.

Seems he was at a Halloween party, dressed as an Indian, in a loincloth, he has Indian blood and is muscular, he could wear a loin cloth and look cool. Someone there had a little derringer in her garter, anyway, it went off, I don't want to know how, and grazed my son on the ass. So I lost about 8 million liver cells this evening from stress and Hep C, while my son cavorts with a woman and her garters and gets shot in the ass by a tiny bullet. Talk about going from hell to heaven in about 5 minutes. He was quite surprised at my screaming about how was he, did he still have a bullet in him, etc. And I was immensely surprised at how calm I got when I found out he was trying to hit on a woman and she shot him in the ass. I know the cowboys fucked the Indians a long time ago, took their land, went to war with them, but this time, it was quite alright with me that the cowgirl shot the Indian. Perhaps he will keep his butt covered up from now on. Ain't this some shit, just when my life gets quiet, bam, some cowgirl shoots an ass and my whole life goes topsy turvy. I'm going to eat some ice cream and soon, this will all make me laugh. Hope you all got something to make you laugh, preferably without bullets, even small ones.
Jackie

Friday, October 28, 2005

Pray for Effective Convergence

Convergence, it happened to me yesterday, so today my brain is full of all this connected stuff around me and I'm trying to sort it out so I know exactly what I should be praying for. It all sort of went like this............ I get an e-mail from Doc about a summer research program she is trying to get into, a study on the proteins that make up the Hep C virus and she is really excited about it, both because she is a biochemist whiz and beautiful to boot, plus there is a little money in the research so we are both happy about this chance for her. Then, later in the evening, I am checking the market, so see how Vertex is doing, Vertex being a small pharma that is working on protease inhibitors for Hep C and I gotta tell you, this drug sounds like the miracle cure that I hope to live long enough to benefit from.
A link on my stock page takes me to some info in a Hepatitis forum, full of good info, stuff like in trials in Europe, researching Vertex's VX950 (sounds like a rocket title in a bad B movie, doesn't it, VX950 from Mars) but it is a pill and in like, 7 days it is reducing viral load to zero. With none of the horrific effects of the current treatments, they take months for that kind of reduction and you gotta give up your hair, sanity and appetite in return. Forums all have different flavors, there are a million out there about Hep C, but this one in particular is full of excellent clinical info about protease inhibitors and the various studies being done. So I am excited about VX950 and have watched the stock for a while. It is feeling a little mystical to me, reading this forums' posts, talking about studying the proteins in the Hep C virus, right after Doc tells me she's going to participate in the same thing. Things get REAL mystical as I'm reading the posts, there is one from a woman who is a non-responder like myself and she's describing her life now, only it is really my life. She talks about becoming more isolated, stay-at-home, uncomfortable outside of the space she calls home. And the reactions of her family, plus the physical issues, fatigue and liver pain. Well, this is my life and I'm totally freaked to be reading it in this forum, but I'm okay with it. I like it here, don't want to change. My shrink wants me to go back to therapy, he does not want me to feel trapped in my own home. This makes me laugh, I love this place, except for the stairs to downstairs, they always kick my butt, but home is where I feel the best. My shrink, how can I tell him, I do not feel trapped at home, I feel trapped in this body. Trapped with little bugs, wrapped in protein, that I can't cure, and sometimes, I get scared I will not be in good enough shape when VX950 is finally approved. But that is for another day, today, I am praying to the gods, for Doc and for Vertex and for Elsa, that is her in my picture for today, she is my oldest grandchild, I used to be more of a rock and roll gramma, now I do not see her too much. The down side of staying home alot is missing her and hating the stairs, I hate those stairs. But today, I am getting off to the mystical convergence of proteins and Doc and perhaps that miracle cure is coming soon. I will enjoy it while it lasts. You also enjoy whatever is making you smile today.
Jackie

Wednesday, October 26, 2005

So, I'm reading this post from last night, what the hell was I thinking? The concept of addiction and meditation is difficult enough for me and I have been reading about it for months now, so I go and try to cram it all into one post, along with a horrific picture, because it is Halloween and because I am trying like a son of a bitch to quit smoking. But for anyone of the three people that read my blog, well, last night's blog must be just darn weird. Sorry, honestly.

I am trying to meditate thru the urges to smoke, but I'm laughing about it because the urges are coming about every 7 minutes, so I spend 5 minutes meditating and then have two minutes in between to try and do the dishes. Mitch freaked out to find me with my hands in the dish water, eyes closed, breating kind of slowly and deeply, he sort of wrapped his big arms aroung me real quick, he thought I was a bout ready to pass out. So I had to tell him about the meditation method of not smoking, instead of his method, which was major sugery and mainlined opiates for two weeks, and he's kind of laughing, but wants me to give it a try, mostly because the better he gets, I think he is starting to have urges now himself. So, oh, dear, an urge is coming on, and the lotus position is not possible in this computer chair....see you....
jackie

Tuesday, October 25, 2005

Hungry Ghosts

This scary little photo is from a book written by the physician of Mao, that fat guy that tried to waste China in the 1950's. These are "hungry ghosts" and there are a lot of explanations for what and who they are, but I am writing about them in the context of addiction and what is addiction, anyway? I am addicted to cigarettes and cannot stop smoking. I am addicted to denying my Hep C and am addicted to the numbness that comes from denial. "Hungry ghosts" are an explanation I happen to like, the description of a desire or a "want" that cannot be filled, the manifestation of a brain wave that is made real to me, real enough to cause me discomfort and to fight the hungry ghosts is so very hard.

Buddhism, where Hungry Ghosts (pretas) have their own realm in the Wheel of Life and are depicted as teardrop shaped with bloated stomachs and necks too thin to pass food such that attempting to eat is also incredibly painful. This is a metaphor for people futilely attempting to fulfill their illusory physical desires.

"We think that we are human beings, not hungry ghosts. First let us acknowledge that the one who performs [the practice of offering] is the one who needs it the most." There is a day the Hindus celebrate by cooking feasts for the hungy ghosts. The offering being talked about, the food being cooked......the food is not for the ghosts, but for those of us who need to rid ourselves of those same ghosts. The Jewish faith has a day that a hungry ghost visits and tastes their wine. Somehow, I cannot see myself making scones so my ghosts will go away, and yet, I understand I am the one who needs the help the most.

"All of us, to some degree, resemble these sectioned things. With one, the heart has its reasons....that reason doesn't know, the head is hungry when the belly is full; with another, the intellect wears itself out in vicious circles while the decapitated body attends to daily needs. And each one in his own way, a way he is often proud of, lives his life in pieces, barely held together by the loose threads of social function. Lucky people, Tibetan though it may be, if it considers these creatures exceptional and legendary! For us, on the contrary, it is the coherent man, made of a solid block, who would clash, crash and amaze. Take a good look, and you will see only hordes of dismembered phantoms who suffer, yet who are our brothers."

Now this sounds scary, but after reading and examining it all, it isn't scary to me, I want to think I am a coherent man (woman), and I clash, crash and amaze and when I look with engaged eyes, I do see so many brothers (and sisters) who live lives in pieces, in circles, round and round, when the phrase "dismembered" is used, I think it is to describe any of us that lives an unexamined life. The brain (intellect) goes round and round, while the body goes about it's daily routine........that is where I have been with my addictions, and I have resolved to put my head back on straight and make sure it is connected to my body. I will challenge my hungry ghost thru meditation ( imagine me, dropping into the correct position and chanting every time I want a smoke?), yes, I can do that, and also strenghthen the loose threads of my social functions enough to see the hungry ghost for what it is.

My desire to be rid of Hep C, my denial of Hep C, that nearly invisible construct is also a hungry ghost, my great fear of facing what I have to do to try to beat the virus, hidden behind insatiable desire to be normal, trying to embrace that life is so beautiful and finding every nugget that makes it worth living, all the while, feeling deep in my heart of hearts that it was inevitable that I will die from Hep C, living like a ghost, here at home, never leaving. Incongrous. My hungry ghosts, I am addicted to them and meditation may show me the face of my ghost that makes me smoke, and I may kick that ghost's ass, but the ghost I carry of who I was before Hep C and the ghost of my fear are harder to rid myself of. I do not know how to exorcise those ghosts. I am trying to learn how. This is stuff for another day. Hope your ghosts are all Caspers on Halloween just wanting a little chocolate.
Jackie

Monday, October 24, 2005

The PERFECT Nurse


The perfect nurse, for a sick person, is NOT a wife. Trying to be the perfect nurse, while being a wife (or husband) can make one prickly, perhaps pointed, peevish, pissed and pathetic. I know this, am learning this pointy point, as I try to nurse MitchMAN back to health after someone took a scalpel and cut a 10 inch incisision into his back, thru the muscle and into his lung, all of which has left him with a recovery time of about 8 weeks. For him, this is about 6 weeks too long, so today, he made me take him to work for a staff meeting and I found myself being pathetic, you know, "don't walk too far, don't let anyone pat you on the back, take some yogurt, take your medicine, take your cell phone, jeezus", these words were coming out of my mouth as I'm driving him to the job and I alone know he still has about 15 stitches in his back and I'm not happy about his choices.

So I'm trying to be the perfect nurse, I have soup cooking in the crock pot and homemade bread rising on the stove, and the imperfect patient is at work, with stitches inside him, next to the lung we just paid $30,000 to have this fairly rare, large balloon removed from, while I slept on a plastic chair and took showers in a strange hospital using a large plastic container to pour the freezing ass cold water over me, this hospital was big on energy efficiency, which is cool, but let me know next time, BEFORE I try to shower. And I am slowly giving up the notion of the perfect nurse, but am a little puzzled about what role to play next, MitchMAN will start working at home for a few weeks, so I guess the perfect secretary is next. I wish I didn't have this liver on fire in my ribs, I think I would find a job. And rent the perfect secretary.

But I'm still laughing, it feels better than being frustrated and when it gets down to the last little point of it all, I am really fucking glad that MitchMAN is okay, we got lucky, there was some chance, of well, this whole experience not going so well and those chances gave me nightmares for weeks. I am just coming to terms with how scared I was, more than having to start tx again, and that is saying a mouthfull. I am so vunerable, we all are, aren't we, when we choose to love. This is okay, because I can still laugh. I am the prickly imperfect nurse, changing gears, becoming something new for another day. Hope you can laugh today.
Jackie

Friday, October 21, 2005

Lemon mouse in house

There's a mouse in the house, saw him scampering (good word) across the hallway last night, which does not bother me, I am not one to be afraid of mouses, but when I got in the pan drawer for a frying pan, I found he had turned it into his bedroom and bathroom and well, the mouse has to go, because I like clean pans. So now, I'm remembering this phrase I heard in a movie, don't even remember the movie, but it went something like "what a load of lemons you got dumped on you. Now, you can lay under those lemons for eternity, lamenting the load, or you can squeeze them and drink up." The mouse made me think of this saying for a good reason, even tho it might seem incongruous.

Right now, I am not feeling like I am under a load of lemons, but I have felt this way in the past, and more than once, the feeling was related to my Hep C and man, I wanted to lay under those lemons forever. All of us get in that place, where issues come tumbling down like lemons and we want to just lay there. I was comparing those "issues" to my mouse. Issues do not have physical form, usually, usually, they are constructs we create in our brain, our brain gets unhappy with the weight and we experience stress, all from creations of our brains. "My car isn't running right, my kids aren't running right, the washer isn't running right, or my favorite, "the bank account isn't running right" as if our brain time expended on those issues will make one bit of difference. I believe this is one of the definitions of "futility" or perhaps it is insanity, I can't remember. Brain fog.

Now, the mouse has physical form, he has fur, cute little black button eyes and is just trying to make it thru the winter. He has no idea what stress is, otherwise he would find a pile of lemons and stay here, for eternity, because I am going to buy a mousetrap, live catch, I hope, and move him back outside. This is futile, I know, because ask any mouse expert and they will tell you that the chances are that mouse will come right back to your pan drawer, just give him a day or so. So this mouse, with his physical presence, should be totally stressed, because I am going to trap him and ruin his day, but I just saw him a minute ago and he looked just fine, kind of industrious, cute and energetic. I want to be like this mouse, and now I'm laughin my ass off, because I probably am this mouse, if I knew what the gods really had in mind for me or for all of us, I would probably give up my bullshit "issues", even those related to my Hep C, and just start scampering. Hope you have a scampering kind of day.
Jackie

Sunday, October 16, 2005

This is so wrong


I love this photo, I guess you had to be there, but the sign is posted at an entrance to the hospital on a very straight street, yet the arrows go around and around. What the sign does not say, is that the circular loop it is depicting goes all the way around this towering, skyscraper (skyscraper, think about that word, how cool) of a building, and you do not realize you are stuck in a loop until long after you have passed this sign. It is kind of a cruel joke, this sign, especially when a majority of the people walking out of this building are fairly stoned, the pharmacy is right near this exit and pain meds is the majority of the drugs they dispense. I'm sure this does not reflect on the quality of work done at this hospital, but to be wheeled out the door, stoned to the max, see this sign on a perfectly straight road, and then to end up in this never ending loop, blocks away, is a kind of hellish end to a stay in the hospital. With this sign, I end my venting about the hospital. The experience is out of my system, I no longer wake at 4:00 a.m. expecting the x-ray machine to be rolled in my room, which necessitated my leaving the room, in my jammies and sleep in my eyes, while they xrayed Mitch. This machine was like a giant forklift, like the loader Sigourney Weaver walked in when she kicked the queen aliens ass, big, looming machine, grinding wheels, they rolled it over Mitch and the bed, all the while, I just knew xrays were leaking all over my plastic chair/bed and had been leaked on the chair for years, I probably absorbed enough xrays to set off detectors in the airport. Waking up this way for a week made an impression on me, as you can see, so to end the experience with this sign, I'm liking this. I'd like to make some comparision to my life and this sign, going round and round, but it is Sunday and we all deserve one day off without me examining every aspect of my life, from my navel to the trees in the yard. So have a good one and when you see one of these signs, just know that there really is a great giant circle coming up in your life somewhere, even if you can't see it right away. Later.

Saturday, October 15, 2005

My Thanksgiving, as per Don Henley and Miles Keaton Andrew


My friend, Miles, has a blog so cool, it should be required reading for anyone posing as a human being and claiming compassion and intelligence, and anyone reading my blog will already know who Miles is, there is a link from this blog to his, way down on the bottom of this blog. He is an author, wrote an incredibly funny book and has taken treatment for his Hep C into his own hands, turned the time of treatment into words and put them in his blog, he got a million hits on his blog last year, which makes me think that since there are about 4 million folks infected in the US right now with Hep C and only about 2.5 million know they have it, there are a few million folks who could spend some quality time reading Miles blog and then go out and get tested. Could be the best laugh they ever had and the most useful. Anyway, the photo I've posted is one Miles took on a trip to Europe with his son this summer, he was foolish enough to let me whack at it with my photo sadistic software and turn it into a watercolor. I like to think the folks living inside the houseboat you are looking at are smoking a fat one and not thinking about Hep C, but we will never know, will we?

Anyway, I'm blogging today for Miles, because he has started maintenence tx for his Hep C, which is small doses of interferon every week instead of the big whammy, and while it will not cure the virus, a person's liver loves it and takes a rest, heals up some and maintenence can stave off liver cancer for a while, but maintenence is "off label", meaning that doctors can't prescribe IFN for it, because some asshole at the FDA won't get the help he needs with his reading disorders or otherwise he would know that the most currrent thinking by the talking medical heads is that maintenence is so very good for a liver, and costs so much less than a transplant, but with the FDA's learning disorders governing whether sick folks like me can get IFN for maintenence, my liver is disintigrating, which, as you might imagine, pisses me off terribly. But I have devised a clever scheme to get around all this bullshit, just as Miles as done, and I am leaving some words in this blog for Miles, for his courage to go to the bad place that interferon will put you in and some words for myself, to help me stay brave while I perpetuate a tiny hoax on the medical establishment, just to get the meds I need to keep the cancer away and hopefully, keep my own liver. I like my own liver, hate the feeling I get every day, the tired, sort of ache that is my liver language for "get me some fucking help" soon, so while Miles has started the mindfuck that is tx, I know I will be there soon. And what he wrote in his blog a few days ago, something like "the person you are when you are on tx, is not the person you are, really", well, take my word for it, that is so true, so true, too bad I can't have an extended out of body experience while this body goes thru tx, but I can't. My family will be wishing they could have the out of body experience, and I got a little break in my heart, knowing they gotta watch, but when I am done, and the labs come back and the liver is better, for a year or so, it is total joy. So Don Henly wrote some words about Thanksgiving, these words are for Miles and my family and for me, let's hope I can remember them in a year from now.

I don't mind saying that I love it all
I wallowed in the springtime
now I'm welcoming the fall
for every moment of joy
for every hour of fear
for every winding road that got me here
for every breath, for every day of living
this is my Thanksgiving.
for everyone who helped me start
and for everything that broke my heart
for every breath, for every day of living
this is my Thanksgiving.
Later.
Jackie

Friday, October 14, 2005

Even the ivy is trying to get out of here!

This photo is of a wall aroung the "healing garden" at the hospital, while I was strolling by, the ivy caught my eye, the long, spindly trails climbing the walls began to look as if they were trying to spell out words....get me the hell out of here...seemed to be what they were trying to spell. This hospital is such a strange place, so beautiful on the outside, right on Lake Union, the beautiful greenness of Seattle all around, but lots of serious medicine going on inside, plus some real dickhead docs residing there. The experience is slowly leaving me, today was the first day that my home felt like home again, I kept looking for the tubes and beeping instruments and honestly, I was surprised at how out of place I felt here at home when we first arrived. Exhaustion is the culprit that comes to mind, but I have slept fairly well for three days now, inspected all my own plants, and was a little piqued that not one of my ivys spelled....we missed you, Jackie....but it is good to know that all I have tended and nutured has also adapted and adopted some of my independence, everything here was fine, the neighbor watered a little for me and her kids cared for the dog, so home is home again and feeling really good. Well, except for the falling oak leaves that are rustlin in the roses, whispering about the winter coming, but my tomatoes are still singing beautiful red notes, so I have a few weeks of sun left. I'm going outside to apply some water, hope the sun is shining where you are and the tomatoes are still singing a little to you. Later.

Thursday, October 13, 2005

I am the camera, it is me

So, who is this woman, and why can we see her twice in this photo? The haircut ought to give it away, when we were getting ready to go to the hospital, I went into this kind of "war" mode, cut off my hair, cut off all my nails, packed two pairs of jeans and 5 t-shirts, one pair of shoes and no make-up, it was like I was expecting combat of some sort. Which, when I think about it, was exactly what I got at the hospital, and with my short hair and no nails to worry about, the whole seven days became about Mitch, I was in warrior mode and believe me, I needed warrior mode or I never would have lasted those long seven days.

For one thing, for anyone with advanced liver disease, fatigue is a big time issue, and everywhere I went in this mini-city of medicine, there were stairs, fuck, I hate stairs, altitude and the scaling of it can kick my ass quick. So for every meal I needed, every cup of tea, every phone call I had to make, it was up and down stairs. The nurses and I got along great, they liked that I bathed him and chased down ice water, fluffed pillows, cajoled him to walk and breath, stuff that was necessary, but took a lot of work, so we got along just fine. But the docs, wow, tried to tell me some shit and I had to call them on it, just about every day. Mitch had issues with low oxygen saturation in his blood for about 4 days, this can be dangerous, 6 foot 4 inch men need lots of O2 to keep the brain cells a live. So this lung doc says, when Mitch's 02 sats were at about 85, that "he probably always ran a little low", at which time I called bullshit and pulled out pulmonary tests from two weeks before his surgery and the numbers were at 96%, this is about what they should be for anyone. At first the doc decided I was too stupid to be able to interpret what the numbers meant, wow, he should not have done that, I requested another doc, shared the early results of normal o2 sats and behold, we had a therapist there every day with aggresive breathing exercises for three days until Mitch could hold a 94% which is fine for anyone. The first doc was going to send Mitch home with a level of oxygen that could possibly have killed brain cells or caused overwork on the heart constantly, man, this guy was a dick. I think he decided I was a neurotic wife, but the wonderful thing is, I never have to see this man again, I do not care what he thought and I got what Mitch needed out of this tiny dick doctor.

So, if my earlier post sounded preachy, forgive me, I HATE people who preach, but, and I did not think this was possible, I hate doctors more now than I did before we left. For a while, I just hated liver doctors, I figured the sucess rate on tx for Hep C was so low that when the docs saw me coming, a non-responder, they were just extra frustrated and took it out on me. Now, i have come to believe that most all docs are dics. Blessings to all of you who have doctors you love, cherish those folks, bring them candy and tell them often how good they are, because a good doc is the exception in my short life and when I finally find a good one, I will worship him.

The photo is a strange one, I noticed a strange reflection in the glass of one of the doors of the hospital, it made me think, I am nurse now, staying calm in the face of this horrific surgery, but inside, is a mini-me, still feeling tired, sad about non-responding, having Hep C in general, but the big me, that is the nurse and she stayed strong and fought for what was right. Guess it worked so far, Mitch is walking a block or so every day and soon, all this will be a memory and he will have one bitchin scar and two lungs that work like magic. Why did it all have to be such a fight? Doc was there with me, she wrote a letter to the head doc of the hospital, she said to him "as a student at this hospital, she was appalled at some of the decisions made, especially since she was being taught so differently at this same hospital about being a good doc." I had to laugh, she might get a good answer from someone, at least her teachers best beware, she may be tiny, but man, do not piss her off. She said she takes after mom and she was proud of me, challenging the docs. Dangerous stuff to do, if you ask me, why did it have to be such a fight? I am saddened by this, what have we done to our medical establishment? Oh, well, Long Live the fighters, especially those who cut their hair and nails and come prepared with cameras and attitude. Now, I am just tired and damn, damn, damn, do I wish I had a cigarette. Is this quitting smoking by the "blogging" method? Hope it works. Hope you all are fine. Later.

Even upside down, hospitals still suck


In this photo, you can see a wing of the hospital, MitchMAN is up about four floors and over about five windows, I am taking the photo from what they call the "Healing Garden" at the University of Washington, and I'm wondering as I'm taking it if there is healing going on for me, sittin in that garden, snapping photos. I know Mitch is too damn sick to be down in this garden, soaking up the healing garden vibes, so for just a moment, I watch his window, experience a moment of quiet and sad for how sick he is, and then a moment to let the garden vibes soak into me, maybe my Hep C is a little better for this whole experience.

Is the hospital any easier to take when it is just a reflection in a healing pond? Not really, gets worse actually, instead of just the inside of one room to look at, I saw windows and windows of rooms, folks there for a lot of different reasons, but it was a bit comforting to know that at least some of them were getting better, even if I was going crazy, sleeping on a plastic chair and listen to doctors who, in my opinion, really are aliens. I mean, I can get waaay out there, I know this, I compensate, I examine my thoughts and my life often to make sure I stay balanced, but some of these mf are just plain crazy. How and why did we let our Medical Establishment get into this state? I get a little frightened by the thought, but you know what, I have come to terms with my own personal responsibilities, especially when it comes to my health, quit smoking ( how's that going, Jackie? Just fucking fine, excuse me, I have to go scream for just a minute), started walking a lot more, am listening to my shrink about taking my meds, and will start maintenance tx to help my liver stay in decent shape for another year or so.

I guess what I am trying to say is that so much medicine dispensed these days is dispensed because of our bad life style choices and we are empowered to really live our whole lives without a lot of interference from the medical establishment. Hep C kind of fucks that up for me in some ways, but Hep C was the catalyst for making me see the rightness in better choices, not smoking, eating better, etc. so I guess it was a fair trade. Not really, Hep C sucks, but it sounds good and supports my rambling theory right now, so what the hell. I just know I intent to stay as far as fuckin possible away from the inside of another hospital room for as long as I possibly can. You all take care of yourself and do the same. Later.

Wednesday, October 12, 2005

WARNING!! Graphic picture, not for the faint of heart



So, you might ask, Jackie, where have you been for the past week? Well, there are not enough keys on this keyboard to type the words it would take to explain where I have been, but this picture is one hell of a good start. This is the MitchMAN, and his big owie, this beauty cost us about $30,000 and one week of hell, not that he is in any pain, the small tube in his spine is delivering pain meds, so man, he is having a good time, but I am sleeping on a plastic chair and not having a good time, which will all go away when he heals up. I keep telling him he will have one bitchin manly scar when this is all done, my scars are all internal, little owies from watching the one you love struggle with the physical body, plus, I do believe the medical profession has been taken over by aliens, I mean this in all sincerity, I have never met more weird doctors in my life, and with Hep C, I thought I had met them all! But we are home now, the tubes are gone, and my sweet love is starting to take short walks and coming to terms with the quality of daytime tv which I think is hitting him harder than the eight weeks recovery he has ahead of him. This will be such a looooong eight weeks, he wants to call work already and see how it goes, jeez, I still have to get him to the doc to get the stitches out, I told him today, I can see the big one coming, the patient says he is okay and ready to hit the office and the nurse says no, time to take another short walk. This man is 6'5" tall, who will win this one? I will let you know. I have some funny pictures of my time in the great medical establishment, I will share them tomorrow, but tonight, I get to sleep in a real bed and I even got to take a long bath and did not have to eat hospital food, so life is better and I am very happy. Even with this big owie hanging around, this big owie will go away and I can help. Not like Hep C, but then, that is food for another day. Sorry about the graphic picture, but it is a part of my life these days and will influence my blogging for awhile. I think all the rest of the blogging about this adventure will be funny tho, I worked hard at finding the humor in the medical establishment and my, it was so much easier than I thought!! Take care.
Jackie

Friday, September 30, 2005

Background noise


In an earlier post, I showed the birdie house, in the snow, this one is in the bright leaves of fall and I'm putting it here because the wind is blowing about 30 miles an hour outside and all these pretty leaves are dancing around my window to remind me that the snow is on it's way. Today, I do not need the wind, truthfully, I do not need to be blogging, I am starting to climb the walls from the waiting for Mitch's surgery, there will be cameras and little silver snaky tubes with lasers next door to my husbands heart and the surgery is fairly complicated, he has three TEAMS of doctors that will occupy the room where the snaky tubes will go inside him, next to his heart, which I always figured the only next to his heart should be love and I have lived every day since I have met him making sure that love was all there was living there, next the beating organ we all talk about so much. You gotta have heart. My heart breaks. Cross my heart. So, I'm putting up this picture, because the colors are beautiful, I can't find any words, I am scared, but when this is all done, and he is well and life goes back to its wobbly balance, I will feel better because I was strong and I blogged today and left you this picture. Later.

Thursday, September 29, 2005

The truest thing a man ever said.

"But love don’t make things nice. It ruins everything. It breaks your heart. It makes things a mess. We aren’t here to make things perfect. Snowflakes are perfect. Stars are perfect. Not us. Not us. We are here to ruin ourselves and to break our hearts and to love the wrong people and..and die…I mean the storybooks are bullshit!"

Anonymous,

There is no picture in the universe that I could add to this quote, I would not want to. Doc lives with two perspectives, the fault of me and Bobby. She spent the first part of her life, thinking love was perfect and this part of her life, now, she is angry to learn it is not. How does that bode for you, I do not know, because she grew up with the illusion that her father and I loved each other perfectly, we were "cool" people, and then she learned the truth, he drank and died and left her with guilt and a wound that changed her and always will be with her, Jack. And me, well, she should be very angry at me for enabling the myth she was shaped around.

But is it within your ability or do you even have permission from the gods to make her see otherwise? I think not, none of us do, it is hers to learn at her pace, to receive and dole out her own pain and punishments. None of us can "teach" the lessons of life and love, no more than I could go back and relive my life with her as a child, to make it right. Isn't that a bit scary to you, it is to me.... that I would imagine I could possibly know what is right for a child, another human being, to impose my ways on them? Yet, I would give up all I am to do this, and accepting I could not..........changed who I am, accepting my mistakes is not easy and still causes me much sorrow. But I also came to embrace the gift of being just a human, thank god for that. You are not right or wrong, you and her just "are", whatever that is. But ain't nobody perfect.........thank you jeesus. Let me go make a few more mistakes today, as it is early in this day and I have much to do. Take care.

The ability to wear a hat, and be cool, is not genetic.

Doc can wear a hat and make it look cool. I cannot. This has always made me wonder about genetics, nature vs. nuture, perhaps her ability came from the intense emotional connections her and I nutured for so many years, all the while, me neglecting my fashion sense in favor of spending billions of dollars on her clothes. I did not mind, but damn, I wish I could wear a hat.

Sometimes, the smallest things catch our eye and trigger floods of feelings, like the river, so it takes awhile to figure if we are swimmin upstream or being pulled downstream. Either way is cool, depending on your frame of mind, in my frame, i got both currents going on, which for me is nothing new, having lots of time to ponder, PONDER, I find the exercise keeps my brain muscles strong, and well, to tell you the truth, keeps me from going totally mental. So this is a picture of Doc and boyfriend, someone she loves very much, and in that loving, she swims upstream and then thrashes around in the current and floats downstream a while. Who and how she loves is a mystery to me, which I have finally come to realize that parents and children can know a lot about each other, her generation, for the most part, enjoyed much more emotional connections that I did with my parents, but to love as an adult, both my love and hers, somewhere it must be written by the hand of god, these things are not in the domain of parenthood.
Okay, I am finally cool with this, accepting it as one accepts dark matter, quantum physics, how do all these damn geese know which way to fly and why can't I make pie dough. It just is what it is. This is the acceptance phase of grief, I saw it's name tag before it hit me upside the head a few weeks ago, when I had to throw out some more of Doc's baggage out of the nest when she entered medical school. But, give me a break here, when Doc was 18, she left me and went to live with her dad, a long ways away, to go to UCLA, which was a dream for her. So I lost a child and a husband (he was easily given up at the time, later, I paid for it), but to compensate, I met the MitchMAN, my soul mate, and eventually, Doc's dad and I came to the place where we could forgive each other and bond together in the task of finishing raising Doc. Doc's dad died while she was in college, so I did not give him up so easily, there was a fountain of grief, flowing into the river of grief for losing Doc, because when she moved away, so much of my life, the part I considered worthwhile, went with the two of them, but I knew their journey was not meant for me too.
I will live always with the burden of knowing that if I would have went with them, Doc's dad might still be alive, but that knowing is balanced by the unshakeable sureness that I would have died, perhaps not the physical, but the spirit would have. So I made a trade, and the payoff was an Amazon of grief that I am just now coming to terms with. All this happening while I fell in love, and this is the amazing part, I am still in love, at ease, every day happy with the MitchMAN, a rare peace, and I will say this although it will seem unbelievable....he and I have never spoke any words of meanness to each other, not one in five years. We have both expressed frustration or anger or sorrow, sometimes in fiery ways, and I have been razor sharp to him during tx, and lamented what the person I was on tx pushed him to do, or not do. But still, he is all I need in a companion for the rest of my life. This is much to say in these days of complicated relationships and changing expectations, but I do feel empowered in knowing this part of my life is complete. I still mourn, I still rage, my life is full of messes and complications, yet I stand on solid ground, because his feet walk it too.
Now I just read something very interesting, about the counselor or the shrink, in the mirror, trying to heal themselves, what an intricate thought, one would first have to be sure about the notion of being healed, if the counselor was human, like the rest of us, could they accomplish such a thing? What would a person have to accept, or give up, to become well? And, again, there is the notion of what "well" was, myself, "well" is waking up every day, being glad of taking another breath, no pain in the liver, enough energy to wash the dishes and still smile at my husband when he came home. The notion about the counselor came from a post, a very insightful post, sometimes insight can be so elusive and sometimes, when it hits you, it feels so GOOD, until you realize that insight is really a bunch of new ideas and new places and some of them seem dark, only because they are unknown and insight can require forgiveness and stretching the brain muscles til they scream, so I bet a lot of us avoid insight like telemarketers during dinner, personally, I drop to my knees and thank god for every insight I ever had, even if I had to dash my brains on some rock to integrate those insights. Something always attached to the revelations, like my burden of Doc's dads passing, or acceptance of the mysteries of Doc and love, but I would not give those burdens up, if it meant losing the impression of experiencing life, my life, ebbs and flows, life is the greatest insight of all, as soon as a person comes to terms with the fact that it is not perfect, and in fact, can hurt like hell.
So many ways to go with life then. Wow, ain't that the cool part of it, the choice to change, the fear of chosing the direction to change and then just fuckin going for it. Balls to the wall. Nirvana's first of four gifts or rules, whatever you like, immutability. Immutability. We are all alive together and as long as we stay alive, life is immutable, all the rest is change. Anonymous, you write well, I understood it all. But did I understand what you were trying to say? I think so.
jackie

Tuesday, September 27, 2005

Educating doctors

No photo today, I am gathering all my lab tests and biopsy results, etc. to take to my new shrink, see, my liver doc decided I had to prove three months of no depression or panic before he would put me back on tx. Hmmmm, so I have these hoops to jump thru, all for the pleasure of peg-interferon and it's friends, loss of hair, fever, aches and pains. If you've been thru treatment, this is all boring, because you've been there already. Being a non-responder, I live every day knowing that the tx, the shots and million pills are waiting for me again and I gotta tell you, I am not happy about this.

When I got out my labs today, I tried to compute my liver function increases and figure out long I have until the numbers rise into that dangerous zone where the choice becomes not really a choice, because for all my bitching, I do want to clear the virus, but I will not go calmly or quietly into that long dark night, to me, it feels like tx is a long dark night. My liver doc wrote a letter to my new shrink, said "Jackie suffers from more depression and panic and anxiety than the usual Hep C patient". Now, this is making me laugh, how the hell does someone objectify something like that? If my reaction to tx is subjective, then his opinion is subjective, subject to my laughin, all the while, I really am trying to work with this new shrink and get the "mentals" under control. When I first read about getting the mentals right first, from MK Andrew's exceedingly accurate, blindingly funny, real world Hep C blog, I didn't quite understand "mentals". I understand now, I have to find a way to fight Hep C again, but no one, no one deserves to go thru the sadness and fear that I went thru on tx last time. So, I'm gathering papers for the new shrink and will try hard to accomplish what may be un-accomplishable for me. But I won't know until I try. So I'm trying.
I am also getting ready to make the long trip to the University of Washington Surgical Center for the MitchMAN to have his surgery. We leave this weekend, so I will not be blogging for the duration of his recovery, unless this fine hospital might have wireless access? Interesting concept. I will bring my camera, of course, so there will be pictures too, of this strange new time for Mitch (he is fifty years old and never spent one day in the hospital) and pictures for me, I am scared for him, sad he has to go thru this, lung surgery is very painful and takes about 8 weeks to recover from. I will see thru my eyes, in his face, what he saw thru his eyes, on my face, while I was on tx, the marks and memories that too much pain can leave.
And this transition of the long winding life path requires pictures. Want to know something funny? I have a few ideas of pictures, right now round and round in my head, of this hospital journey, and they are all in black and white. Don't know why black and white, but it is a style of photography that I am not familiar with, but realizing I will have 10 days or so in this sterile environment makes me think this is my time to learn. We'll see. We'll see, when I say that in a paragraph about photography, what does it really mean? We'll see. Take care.
Jackie

Sunday, September 25, 2005

art vs. science in a Raymond Chandler quote?

Actuallly, the Raymond Chandler quote is about truth and you gotta hang with me as I write this, because the words have all squished up in my throat/fingers, and are spilling out,so pray to god that i can put them down in an order that will convey my idea and you will understand, and in understanding, well, who the hell knows. It's Sunday and this quote got me good for some reason, perhaps my own encounters lately with the mystical, which is explained in a minute. Why the waterfall? Because it is art as expressed by nature, but also science, as there are electrical generators at the top of this falls, so beauty and purpose seemed to be embodied in the photo.

So Raymond Chandler, famous for detectives that I would love to meet, right after I got over the fear of them, wrote this little bit of wisdom, I read it in the Sunday paper and now it is ending up here for you to digest. "There are two kinds of truth-the truth that lights the way and the truth that warms the heart. The first of these truths is science and the second is art." This we can probably all agree on. Good job, Ray. What I'm reading in the paper goes on to say, these words from a "earth scientist" from PNNL, which is a mega-world famous Lab that is in this little sleepy town I live in, we hide it here like treasure in a mountain and i'm loving "earth scientist", my hope for our future on this planet is renewed a bit to know that men can become earth scientists and still write about art. The human male is saved for another day, I envision an "earth scientist" to be a right hand man to "Mother Nature" and since we ARE squatting on her property, I'm feeling real good that she is training apprentices.

This earth guy goes on to speak of astronomy vs. music, sub-directories of art vs. science and its making sense to me like finally finding a signpost after wandering for weeks on a deserted highway. Raymond would like that little descriptive phrase. "Astronomy is the study of our universe...it's language is built on the fabric of length, mass and time and only sometimes understood, sometimes hidden within the dark matter and energy. Astronomy is an externally spoken language, one that describes what is SEEN. Music, on the other hand, is organized upon sound and time, and like poetry, is internally spoken, reflecting personally the artist's skill. We FEEL music." "In science, we ask questions to find answers. In the arts, the questions raised are as important, or more so, than the answers found."

So i'm marveling at these words, they make sense to me, and my intense reaction to music is a little clearer to me, my Hepatitis C has blunted a lot of my energy for life, drawn me into myself, very natural, by the way, conserve the energy to care for a smaller area of influence, but in that shrinking, I blunted some emotions, not intentionally, but it has still happened. I have to meter out how much I worry for my children or my aging parents, to have the energy to care for my husband and myself and to not obsess on my own health or death or pills or the headache and fatigue I carry around. So music I FEEL, and I feel so keenly. And this last quote, I think I understand more of the mystical aspects of, well, breathing in and breathing out. "Some of life's greatest mysteries, mystical, are faced at the interface between opposites - heart and mind, art and science, fear and joy, certainty and the unknown".

This is a fucking revelation to me, I am hanging between certainty, I am alive today and so glad of it, with love around me, the seasons changing, my illness has impacted and changed me....then the unknown, I do not know how long I have to live, my liver is falling into bits every day, my family reflects in their faces their concern with me and my illness, will the next round of tx rid me of the virus, will New Orleans ever be the home of jazz again and the biggest unknown I have right now, who will I be and who will Mitch be after his surgery, this eight weeks of pain for him, him who never spent one day in fifty years in the hospital, looking at me with eyes that have never experienced the helplessness of being at the mercy of medicine and a physical body that will fail to respond to the mind, even for eight weeks, this will imprint him, leave that tatto I talk about on his insides.

For me, I can take care of him, repay him for the care he gave me during my last round of tx, be good/be kind to him. My virus/his surgery, they are equal on the slide rule of life, my tx was sooo long but his pain will be so intense, slide the rule any way you want, we will both come out of this, having replayed each other's roles for a while. I have been the sick, weak, blubbery one, I want to rage at someone that he has to experience this now, but I am calm and still, for it will all be over in eight weeks, in a year, we WILL be on that bald eagle hike, the easy one, for old folks, back packs and bottled water and camera in hand. True happiness is also good medicine, "something to look forward to" and perhaps help me look over and past and a little around the next 10 weeks. Talk to you later, hope you like the words as much as I did.
Jackie

Friday, September 23, 2005

When the levee breaks......

This is a photo/watercolor I did for a series of photos to chronicle the farm before we sold it, I am posting it because I am reminded today that I live high in the desert, no worries from hurricanes, all this because Rita is slamming into the Gulf Coast and soon, if you listen real carefully, we will hear the sound of a thousand homes, disappearing from the lives of people just like us. I am so sad.To try to capture the essence of a home is difficult, I learned by shutting down my brain and letting my eyes really see what was all around me in my daily life on the farm, for weeks before we decided to sell it. At the time, I wanted to capture it for Mitch's family, as they had owned the farm for three generations, but the task became a personal one for me, in fact, it became difficult to share all the photos with anyone except Mitch, he says I have a book now, of images of American farm life, but it was my home, it had breath and heart and could be so hard or mean to me sometimes, freezing cold, breaking ice for the horses to have water, fixing broken sprinklers in the 100 degree heat but somewhere, tattooed on the inside of me is the map of the farm's vitality. I am glad I have those photos. and today is dedicated to the homes lost from Hurricanes Katrina and Rita, for me to treasure my Hep C in a twisted way again, because it was the fear of dying from Hep C that made me pick up my camera and realize what the camera was, a magic mirror that could transcend time and space, and Hep C taking away my strength to do the hard work I used to do at work....caused me to channel energy into the camera and the energy flowed back into my brain, always looking for an image, something that would set of a chime, a marker for me, a picture to take to remember all the parts of my own home sweet home, now it is here inside this computer, all electrons and pixels, for me to call up anytime I want. I wish you could have been there, I wish for everyone to have the epiphany of generations and time and roots, a place that you don't just call home, it calls you and stays, a good friend, there to browse thru when life gets twisted or wonky. Heart-breaking here for all the folks on the Gulf Coast and a little spark of hope for the strength and ability to find home again, wherever they may be cast. So much destruction, from the sea, but out of the sea we all came, in the beginning, right? So, pray for toughness for us all, pray for those folks at the mercy, as we all are, of the planet we spin on, and pray for the time they can all remember home sweet home again. I am. Later.

Thursday, September 22, 2005

There's an alien in my yard!

There is an alien in my yard, wonder if he knows this is a dangerous place to be, if you read my ealier post about my magnolia tree and giving the tree my Hep C, well, you'd understand my concern, but this guy is out there in the Russian Mint, eating and is unconcerned about the status of my health. And I am in here, very concerned about the status of my health, just came back from the Hep C doc, always a strange experience, he is Chinese and it took me the longest time to explain to him what a grow light was, as in, too tired to hang one for the geraniums, but we finally broke the language barrier, except he kept saying "glow light", which made me want to laugh and I think his nurse did, it must be a myth that the Chinese have trouble with the english letter "l", because I got "glow lights" now in the basement, he understands the concept, but I still am feeling guilty that I wanted to laugh so bad, but then the sob says no new tx for me, because last time I got real real depressed and had panic attacks about the snow falling thru the roof and whether my sox matched, so I gotta find a new shrink and then the new shrink has to convince my Chinese doctor that I am stable enough. Okay, maybe the new shrink can teach my doc how to say "grow lights" while he is at it. What a long strange day this is. Gotta go. You all take care.

Wednesday, September 21, 2005

My own mortality, hanging on a branch, somewhere in the mountains.

We had to travel cross the mountains to get Mitch to the doc,it is soo green, I was just loving all the calmness of it all, when, wham, there was this burst of color and I got kind of sad for a bit. Aren't we all a little like these leaves, a beginning and an end, beautifully red, but what it really is, they are changing from the coolness coming in at night, after glowing green all summer, it is time for the last party, bright red, then to softly float down off the tree and land, wait for the snow and sleep. So I'm finding my own mortality in the sights on the mountains and I'm not getting morbid about it, after my children's father died, I guess because I was with him when it happened, I have not been frightened by death anymore. I have a peace about it all, this mantra I hear when folks talk about dying, I am finished with what I am here to do. Now, I still have some scones to learn to make and I think I get to go on a hike next spring to see the bald eagles up north, it is one of those hikes for old folks, you know, oxygen refills posted every 2 miles, but that hike is still out there, waiting to be realized and I will do it, so I have a long time until I turn my party colors and sweetly float from my earth, my tree, to wait for the snow to put me to sleep. But the flash of color, smack dab in all the misty green of the mountains made me remember, I am not done yet, but getting there. Getting there is all the fun, isn't it. Hope you have fun today. My Hep C has me in my jammies, long trip, I'm tired, so the camera and the computer are all I can do, but to me, it is so much. Today, it is the whole tree and the summer. Take care.
Jackie

Tuesday, September 20, 2005

Caged birdfood

I planted sunflowers to feed the finches, but they got so tall, (the flowers, not the birds) that I put them in cages.Now that the birds are eating all the sunflowers, there is just this one flower left, like it is in prison, waiting for the cold and the perfectly hungry bird to come along for the flower to give up it's heart and all its children to that hungry bird. I liked the flower in the cage, safe and waiting for something magic to happen, just the right time in the grand scheme of things, this flower will perform a miracle that nothing else could imitate. Save a birdie in the snow and maybe, just maybe, leave one or two copies of itself behind, to come back next year, swaying in the breeze like the tail of a peacock and leave me more prisoners to love. I am leaving you all with a poem I love. By Richard Brautigan, lived a long time in my state, wrote a lot about fishing, about love, about people but this poem is about Karma. Why not?

KARMA REPAIR KIT

1. Get enough food to eat, and eat it.

2. Find a place to sleep where it is quiet and sleep there.

3. Reduce intellectual and emotional noise until you arrive at the silence of yourself, and listen to it.

4.

Later. My karma repair kit is growing in a cage ouside, going to feed a bird this winter and then leave me bits of memories of itself for next year. But I have been living with the silence also, once I reduced the emotional noise especially, and I am listening to it. Hard to do.



Sunday, September 18, 2005

Whadda mean, the world does not revolve around me?

Smells like geraniums outside today, I have a lot and they know I have been thinking about them, where they will live this winter, how much I will cut them back, and mostly, am I going to get the squeak fixed in the dryer they will residen next to, last winter, there was a lot of discord betwixt the plants and the dryer, part of it due to the sharing of electricity between said dryer and the grow lights. I have three down there, from a satellite, my house probably looks like a pot growing mecca, but the light is really just to keep the geraniums alive til spring comes. My Hep C is a forked tongue dragon, on one hand it is important to me to keep the plants year to year and on the other hand, it is a real bitch to walk up and down the steps to the basement, I get short of breath and these fits of rapid heartbeat when I go up and down too much. My husband hates it, the short breath from the up and down, I mean. Moving on, speaking of my husband, we are leaving to take him to the doc out of town. He has a lung hole and needs it spackled up, and with us having the connections we have with the medical field, we get to see this incredibly good, fucking ridiculously expensive talking medical head to microscopically fix the lung hole. It is more like a lung Grand Canyon, which I have tried to tell the MitchMAN about, but I think he liked carrying around this Natural Wonder, except now he gets tired from going up and down too, just like a man, don't worry about it until it infringes on the horizontal tango. So this amazing doc is doing micro surgery on Mitch and tomorrow we find out exactly what day and how long recovery will be, which I am interested in, because I get to be the nurse and exact revenge for any bad nursing MitchMAN ever did while I was on tx. Actually, if you read my blog for very long, you would think the world did revolve around me and my Hepatitis C, but MitchMAN has been swimming in the river DeNile about this Grand Canyon in his chest, so we never talked much about it. Now, we are acting like grown ups and getting it fixed, I will pace and bit my nails and really be frightenend out of my mind while the surgery is going on, perhaps I have a bit of Denile on me too, but the Canyon is too big now, so we are going to see this famous, yes, famous, doctor to get it fixed. Famous for being a good lung doc and I heard he has the bedside manner of a gargoyle, well, anyone with Hep C can identify with that issue, I am sure, so I'm packing and wanted to tell you all what my friend Miles said before he went off to Europe and stopped blogging, (Miles, jeezus, they have internet connections in England, Al Gore did NOT invent the internet, you could at least drop us a line, I miss you), what he said was...be good/be kind. Be back on Tuesday. Christ, I hope we all get well someday.
jackie

Saturday, September 17, 2005

The moon is full tonight, tried to get a photo of it when a few clouds rolled in to join the photo. My neighbors are probably freaked out, me outside with the camera on the tripod, in the dark, running around in my jammies, but it is such a beautiful moon, I had to get a picture of it to remember, having Hep C has given me strange gifts, along with the burdens, and sometimes I get fanatical about capturing all I see on digital whatever, film, matrix, the remembering part of the camera. Like this is the last moon ever, but that is not why it is so beautiful, it is huge and silver and it won't be the last moon I see, but I try to live every day like it is. Thank you, Hep C. Now go away.

Weather man says it will get down to 45 degrees tonight, when the sky is clear like this in the desert, the autumn colds sets in and my bones know winter is coming, which around here really impacts our books. Why our books? After living in California for about 15 years and then moving back home to the desert, I have an unhealthy attachment to the color of autumn leaves and when I find them, yellow or red or orange, I slip them in any book that happens to be handy. At first, I tried to use the name of the book to help me remember where I put the leaves, you know, like in my Tolkien books, I would put oak leaves, as remembrance of the Ents, put the maple trees in my mystery books written by an author from Vermont, but soon, the leaves spilled over into the phone books and my Jimmy Buffet books, which are all about Florida and I will never find any leaves here that also grow in Florida, but the leaves are exciting for anyone wanting to use the phone book, open it up to my doctor's phone number and the big, green sycamore leaves fall out, my least favorite. Wonder what that means.

Something I learned last year from the oak tree next to my sidewalk, acorns don't grow every year on an oak tree, the squirrels in our back yard knew this and were cranky all last winter, but this year, we will have like a zillion acorns because the oak tree grows this lacy, trailing kind of pre-seed thingy that the acorns will grow out of and we had a million this spring, like every branch had a wind chime in it, only they just swayed and I had to make up my own chime noise to the swaying. These pre things were so beautiful, each one trailing about 10 or fifteen 3 inch cascades of greenery from a little bundle of tender baby leaves, but I could never get a picture of them because the wind always blows here in the spring. The tree was so Oriental looking, it was beautiful and here is where my lack of skills in descriptive words gets me, because I want you to know how beautiful it was and it will all hinge on waiting all winter for one tree to decide to grow acorns or not. The squirrels don't care, they are hanging around with gunny sacks, waiting for the acorns to get just a tad bigger, and wondering why I haven't put corn out for them yet. Hey, I just watched the weather channel and found out about 10 minutes ago that it was going to get down to 45 degrees tonight. Corn hits the back yard at about 32 degrees, so now I got the moon, cold feet and the squirrels outside, with their gunny sacks, looking threatning. Hell, if the oak tree can do this fine thing, I guess I can come up with the corn a little early. Hope it is not 45 degrees where you are yet and if it is, cherish the sunshine in the day and watch how the whole outside changes as the days get cooler. I find it mystical. Except for the squirrels, I gotta find some corn. Later.