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User Journal

Journal Journal: progress 3

This is week 41. I am almost done, and I'm convinced that the only reason the treatment stops at 48 weeks is that by the time you get there, you won't be able to do any more. I still get up every day, I still work some, I don't get to my email more that once a week, or do the floor (at all) or really do much of anything I don't have to do, but I'm still going, and life is still good, and I'm still slightly on the right side of anemia, and I still have some hair. I won't promise to be in touch more, or write more or anything, but I haven't forgotten you all, nor am I gone. Thanks for your hopes and prayers - I'll be done in 7 weeks!
User Journal

Journal Journal: More update 2

The Dragon has told me that I haven't said enough about how I'm doing. In fact, it was something like so you're halfway! So how are you? Ok, so, here's how I am. Chemo is a real drag. I get one drug every day that makes me tired, achey, nausous, and sometimes feverish. I get one on Friday that makes me feel like I have the second worst flue I ever had for the next twentyfour hours - tired, aches, pains, low fever, nausea; and the third worst for the next two days. Tuesday I start to feel better. By Tuesday night I feel almost human again, and Wednesday isn't so bad. Wednesday afternoon I get another drug that makes my bones hurt and buzz - that's weird. Also makes me tired, nauseaous, and cranky. I have a bad taste in my mouth - like old galvanized trash cans - most of the time, so food tastes odd at best. This one begins to ease up just in time for Friday. I am still losing hair and weight, slowly but steadily. My skin is so dry you wouldn't believe it, and this in spite of two to three liters of water a day, and moisturizers. My hemoglobin is rising! My doctor's impressed. I credit meditation, visualization, and the prayers of all you wonderful people out there - you know who you are - who are helping me sooo much. Thankyou! Wednesday's and Friday's drugs make the fibro flare within a couple of hours just to make things more interesting. I have no appetite and no energy. My back hurts. (Also a side effect, not an injury) Stress makes all this worse, and chemical exposure makes all this worse. Bad weather makes it worse. But it's working. And that makes it all worthwhile. I don't talk a lot about how I feel because there is't much good to say, except that I'm doing it, I can do it, it's working, and I am blessed to have the opportunity. I do half of what I used to do, and slower. I don't sleep well. I get another drug today the help that - in the hopes that it will help ease the rest of the symptoms. I'll let you know. I still work because the alternative is to sit at home and think about how bad I feel. No thank you! I know what a rat hole that is! So I feel pretty sick most of the time, but it's what I have to do to be well, I am, with the help of my friends, handling it, getting through it, and looking forward to the day in September when I get to stop doing it, and recover from the treatment. Hope you're not sorry you asked. Life is good, and I'm ok.
User Journal

Journal Journal: Halfway hits it on the button 10

Today marks the half way point in the chemo. Hurrah! Rejoyce with me! Only 24 weeks more to go. I am really glad. Can't wait for this chapter of my life to turn to the next chapter and go on to whatever will be next after. I don't spend to much time dwelling on that, though, makes me want to not be doing this and just go right to that. So...still got 24 weeks to go, but half is done, and everyday from now on means closer to the end of it and a cure, and feeling better again.

I don't know how to link to other people's journals yet, but those of you who read the dragon log will have followed the button story. I still have a button box, too. Mine's in an old cigar box. It was my mother's button box and I played with it when I was small, and the dragon when she was, lots of neighborhood kids, and maybe grandchildren will before all is said and done. It has junk buttons, and buttons that look like little cakes, and flashy buttons, and shirt buttons and coat buttons and little wooden balls and ones that have holes in odd places, and yes, button boxes are for the young, and for the the young in us, too. I don't play with my button box like I did when I was five, but I still get it out and remember, and it keeps me in that resonance of wonder and imagination and joy, and in the line of my for-mothers who had it before me. It connects me, and even more it connects me when I get it out for some small child, or for some lost button bearing waif who appears at my door in search of mending. We who have the button boxes carry the tradition of personal attention to the small wonders of life and the boo-boos of others. It is a tradition of caring in things large and very small. Button boxes are not, indeed, just about lost buttons, but about mending things with wonder and with joy. Children do this. We do this. We are not all women, but in Western culture it has been predominently the women who have done these things. More men do these things openly now (they used to do them in secret if they dared at all) which is a blessing to us all. So treasure your button boxes, your mother's and grandmother's button boxes. Add to them, for the next person who will have them. Add neat stuff and more junk buttons, and, yes, clips and hair pins, and costume jewelry bits that you don't know what else to do with. The button box will find the next person who will hold it - it might be your decendant, or someone you don't even know. I buy them occasionally when they come up at auction for next to no money, because no family member was ready to take the button box on, and take them home and look through them and play with the stuff that some other person thought was important enough to throw in the box with all the junk - just to good to throw away. Some of it goes into my box, some goes elsewhere, sometimes the whole box goes to some other person who shows up and needs a button box. I always add stuff to them. When you get to be this age in the tradition of button boxes you begin to see the people who come into your life who need these things, and you can help them connect with it. So that's what happens with button boxes. They find their place. We never had ammo in ours, though, because live ammo never belongs in button boxes. Button boxes are, indeed, for the young, and that's a hazard children of all ages shouldn't be exposed to casually.

User Journal

Journal Journal: next installment 4

The next thrilling episode is the confirmantion of multiple chemical sensitivities. There are a lot of things in the environment that cause me pain. Among these are fabric softeners, paint stripper, certain freshly applied wall to wall carpets (this may be the glues and/or the carpets themselves), and there is a growing list. This is a mixed message. The good news is that if I can avoid these things, they won't hurt me, the bad news is that if I could avoid these things they wouldn't hurt me, and, this casts into doubt the idea that the fibro will be gone at the end of chemo. It still may be less - maybe a lot less??? but probly not gone. Life is full of little disapointments. I guess the soap isle at the market is off limits (I knew I didn't like it) and a new house is off the list, and ya know, probly that new car, oh well, I wasn't gonna do those this week anyway.
User Journal

Journal Journal: news 1

Had a bad spell there for a while. Back to the doctors, back to the labs,more blood tests, and the results are really underwhelming. I have a new drug, a pain relief med, and it really makes a difference. I'm sleeping better, and that makes a huge difference. I just don't stop doing stuff enough, I get over tired, the pain rises, I get less sleep, I get more over tired,it becomes a very bad cycle. I think we have at least paused the cycle. My doc doesn't understand fibro myalgia well enough, though he gets lots of other things, and he doesn't pay enough attention to the combined results of the chemo and the fibro. Anyway, got some relief for now, and I need to learn how to do less. That's a hard one for me. I have great difficulty not stepping up when I see something that needs to be done. Just sitting there and leaving the next thing not done is a difficult task.
But in between naps I wrote this:

The Night Creeps Closer

The deeds you do
they bother you,
and the night creeps closer to your door.
A little here
a little there,
and the night creeps closer to your door.
Cheat on the taxes
cheat on your wife,
do a little deed,
oh here's the knife,
and the night creeps closer to your door.
You turn away
don't say a word,
you Know it wasn't THAT you heard,
and the night creeps closer to your door.
The government does whatever it must,
it steals your money,
tramples your trust,
steals your voice,
You give it away,
and the night creeps closer to your door.
Every time you turn away,
it isn't me, it's them you say.
You just don't notice,
just don't see,
pretend they really aren't like me,
The night creeps closer to your door.
The way we hold on to the light,
is share our power, share our might,
speak right up when ill we see,
NEVER let the evil be.
Help your neighbors,
help your friends,
but not there can we let it end.
The guy on the street you just don't know,
well he's your brother too, so go
and help him too, don't be scared
it's really time you showed you cared.
It isn't easy, isn't fun.
It looks like you're the only one.
But someone has to lead the way.
Why me? I think I heard you say.
Why not? I ask you,
I'm here too.
It's simply right, the thing to do.
Your voice is heard,
Your light shines bright,
and more will follow to the light.

And the night is held back,
from the door.
User Journal

Journal Journal: tiredness 3

Melody and the Wind are going to have to wait for a little while. I appoligize for leaving it hanging, but I am over extended, and I can't do it right now. I just need more rest - the side effects of treatment have been rough the last few weeks, and I have been puushing to hard. I am sleeping a lot right now, and actually taking whole days off to rest. Gotta do it.
User Journal

Journal Journal: Melody and the Wind 1

Kushka jumped up in Melody's lap, turned around a couple of times and settled with a gentle rumble. Melody stroked the little cat gently, but shook her head as the North Wind reached for her. Kushka like to play with the wind, but she didn't much like the chill as the wind ruffled her fur. North Wind settled back, cleared his throat. "Have I told you,"he asked,"of the castle of the Ice Queen?"
She considered. "No, no I don't think so."
"She was a lovely woman,"he began. "With hair as black as night, and skin as white as snow. Her heart was as warm as that kitten of yours, and she ruled with as gentle and loving a hand as any ruler ever did. Her land was filled with ice and snow, sparkling in the sunlight beneath bright blue skies."
"Did she do special things?"
"She was a special thing, my dear. There was magic in her house, a wholesome healing magic. Things stopped in her house, and gave you a chance to catch up."
"She must be very wonderful."
"Yes, she is, and I have spent many hours there with her. She has wisdom, the kind that touches you gently, and after a while you realize that life has changed almost without your noticing."
"So, what did she do?" Melody liked stories that moved more. She was young, and impetuous, and the North Wind chuckled, a sound like wind chimes in the night.
"Oh, many things! She saved the world!"
"How? How?"
"Once upon a time..."
Melody settled down. She liked stories that began that way.
"There was a King. He lived in a land far away, where the day meets the night, and in his Kingdom the difference between them was a little difficult. They overlapped, and sometimes they mixed together, and you couldn't tell which was which. He didn't mind. It was normal, just the way things had always been. But this is a difficult thing for most people to deal with. Most people like to know which is which, when it's day and night, and feel more comfortable with a clear distinction. People are like that a lot, you know."
She nodded. "I like to know stuff like that."
"Yes, I know. But it doesn't have to be so. You can get to be comfortable with almost anything. But this is about King Nathan, and how he lost the day.
He had a daughter, about your age, a sweet little girl named Sarah, whose greatest delight was to bring her father his slippers at the end of the day, and see him propped up on pillows with a cup of cocoa before she went off to bed. He loved her dearly, and it filled his heart with joy to see her smile. She was a curious sort of child, always looking for new things to learn, and she loved to slip out the door and explore her father's kingdom. But where the day meets night it is sometimes dangerous for a little girl to be out by herself. There are things that live between and little girls shouldn't try to deal with them alone." He looked at her intently, but she just nodded. He went on, hoping she was hearing the warning, but you never know with little girls. "One day, just as what we would think of as evening approached, Sarah sat great stone step outside the door, listening to the birds. She liked to hear the birds chat about their lives. She wondered what it would be like to fly. Busy imagining herself soaring through the air she never noticed the troll slip from the window under the castle or the big smelly sack over his shoulder. But he had seen her, and, in fact had been waiting for this sort of opportunity. Quick as a wink, he popped her into the sack, and ran off, with the smelly sack bumpety bumping on his shoulder, and Melody inside, with an old shoe, a cabbage (somewhat worse for the sack), a stick, some dirt and straw, and something wet that she decided she was better off not touching. The bumpety bumping went on for some time, and poor Sarah, partly upside down, damp and cold, got more and more frightened and just as she decided that she must be lost forever, the troll stopped. He was home. He dropped the sack in a corner. Sarah sat in the sack for a moment, filled with dread. She was afraid he would eat her. But you and I know that trolls don't eat little girls. They Collect them, and make them work in their dark dirty caves, doing all sorts of housework, and darning their smelly old socks."
Melody nodded again,. She could see her Mother, and her Mother looked like it was bedtime. "I have to go to bed," she said. "Can you tell me the rest later?"She didn't want to go, but she knew her Mummy, and when it was bedtime there was no getting around it.
"I'll come back tomorrow,"he said. And with that he slipped back up the chimney, and was gone.
Melody went off to bed, thinking about Sarah in the story, and how terrible it would be to be dumped in a sack in a troll's corner. I'm obliged to report, She did not have very good dreams.
User Journal

Journal Journal: And now for something totally different 1

Once upon a time, in a land far away, there lived a little girl. Not an ordinary little girl, but then, there are no ordinary little girls, are there? This little girl was even less ordinary, if that is possible, then other little girls. She could hear the winds talk, and they told her all the things going on in the world; stories of wonderful things, and places she had never seen, and people she had never met, and all real true stories, because the winds don't lie. They don't know how. People sometimes hear lies in the wind, but really they put them there, and that makes the wind very upset. The little girl's mother could hear the winds too, and she wished for her daughter to not talk to the winds, because she knew that if the little girl listened she would eventually follow the wind away, and go see for herself. (How, dear reader, do we think she knew that, hmmm?) But once you have heard the wind, you can't unhear it, and the little girl had heard. Melody (that was her name) would open her window, and the wind would come in and sit by the chimney corner with her and tell her stories, and reach out just a little to make the fire snap now and then in playful way. And her mother would hear it, and remember when the wind came and sat with her and told her stories, and led her away to find adventure, and she would smile gently and leave them to talk.
Now you should know that the Mother knew the Mother of the Winds, and they had an understanding. The winds could come visit, they could come play with Melody, but until she was a little older, she wasn't allowed to go play out in the Big Wide World with the Winds. The Mother of the Winds knew the wisdom of this, and She had impressed upon the Winds that if they disobeyed this rule, they wouldn't get to visit Melody at all, and believe me when I tell you, one person you don't want to disobey, is the Mother of the Winds. So Melody's Mum knew Melody was in good hands, but she knew, too, that one day the Winds would come and blow Melody right away, into the World and carry her into Adventure.
It was a cold winter day when the North Wind slipped down the chimney, and curled around Melody's feet. Melody didn't like that much, it made her feet cold, so she pulled them up under the rug, and the North Wind curled into the corner by the window where it wasn't too warm, and told her a story about the lands of snow and ice.
I will recount that story for you, as I heard it too, a little later.
User Journal

Journal Journal: today 1

I am feeling a little stronger today - I've spent a lot of time sleeping lately - I sit down at the computer and go to sleep mostly, so I haven't been up to doing much writing. Still, life is good.
Spring is coming, albiet slowly in New England -yes, it was a good surmise that that is where I am. We expect snow tonight and tomorrow, and it's been awfully cold - below zero a lot. Good weather to sit in bed and eat bon bons. And boy, do I have a good excuse to do that! Now if wicked would just stop stealing the bon bons! Good brings them back, but wicked steals them again, and after they've been through that cycle a few times they aren't good for much more than chucking at the cat.(We have six, but one stays downstairs with the dog, and one stays upstairs), so they don't get to play this game.
User Journal

Journal Journal: Test Results 8

The test results are in. So soon! My doc called me to tell me. I have no detectable virus load. None! Can't find it! This is wicked good. I still have to do thirtysix weeks of chemo, but this means that I have the cure. I have to maintain this through the rest of the treatment, and I will need to maintain it for several test cycles after the treatments are done, but that's a formality before officially I am cured. No detectable viral load! It's all worth it.
Thankyou all for your encouragement and prayers and thoughts. I know that it all helps. There is dancing in the street in the snow tonight! And disturbing the neighbors with cheers and joyful noises. And now there is going to bed because all the excitment has worn me out.
Rejoyce with me!
User Journal

Journal Journal: week 12 2

This is week 12. Today I got the viral load test, which will tell me if the treatments are working for me. I have little doubt that they are, the liver enzymes are doing well, and that's a good indicator, but it will be good to know definitively where my test places it. It will be 1 to 2 weeks before I get the results. On the really positive side, my hemoglobin has begun to climb. Just a little, but without the use of drugs to enhance it. I am doing visualization, and eating green leafy stuff and bananas, and it's working. If I can keep this up, I won't get anemic. This is good.
I like my hair cut. It looks good, and allows me to not feel so unkempt. That's good for me. So life is good.
User Journal

Journal Journal: Hair Today 9

Today I am going to get a hair cut. I have always had long hair. Really, never had my hair short. Well, it's falling out a little at a time, and not growing back, and it's brittle, and not fun. So in the interest of a graceful transition, I'm gonna go see a hairdresser, and get it cut. I don't know how short it will be, I'm gonna trust him to help me work that out. I've known him for years, though he's never touched my hair before. Bought a car from him, years ago, and see him from time to time. He sends me a Christmas present every year. A Sweet Gay Hairdresser with taste and class. He'll do fine for me.
A new adventure!
User Journal

Journal Journal: Next days 4

So, it's the next day again. For me, it's interferon day, not just the day after Christmas. So I feel crummy again, and I have that old familiar bad taste that interferon and Riboviron give me. And this is week eleven. The weeks fly by at a crawl. It was a lovely day. I didn't tell the Dragon that I was learning to carve small things because I wanted to suprise her. I picked spoons for the spoon idea and because although they are simple, they are also composed of lots of complex curves and insides and outsides. Good to learn on. I like to work with cherry - it is easy to work, and beautiful. So I carved her a spoon so she could have another spoon. She liked it. I like that.
She knits well, though she is more critical of her own work than I think she needs to be. It's good! I fear I taught her that - it's what I do to myself (though less now than when she was an impressionable child)It is useful to see, though it is not one of the best things I could have taught her. Interesting how our chidren can teach us so much.
And so it is the next day. Everyday is the next day, in a grand procession of them. Today, and today and today. Really that is what we've got. Just today. This is when everything happens. Yesterday already was. Can't change that. Tomorrow isn't yet. Might never be. Who knows? Sure can't do anything on it yet. So how is your today? Are you being who you need to be today? Are you doing what you need to do, learning what you need to learn? Are you fulfilled? If you aren't, why not? What do you need to change to be/do that? We stand at the knife edge of creation, in this moment, the only moment that is. This is the moment when change and tranformation is possible. The only moment when it is possible. Use it well. It won't be back. And it is a precious gift to have. It's the next day. I hope it's a great one!
User Journal

Journal Journal: Christmas 3

It will not be a white Christmas here. It's fifty degrees and raining. That's ok with me.I think snow is over rated when it's in my driveway anyway.
Songs of the season. We like to sing at my house, but when you've sung the same thing twelve times, it's time for a change, so here's one we made up while the Dragon was a child:

The first thing of Christmas that really bothers me
Is cats running up and down the tree

The second thing of Christmas that really bothers me
All these blessed lights
and cats running up and down the tree
The third thing of Christmas that really bothers me
three AM wake ups
all these blessed lights
and cats running up and down the tree

the fourth thing of Christmas that really bothers me
Something's in my stocking!
Three AM wakeups
All these blessed lights
and cats running up and down the tree
The fifth thing of Christmas that really bothers me
Five inches of snow
Somethings in my stocking
Three AM wakeups
Now the lights are blinking!
and cats running up and down the tree

The sixth thing of Christmas that really bothers me
Six solid fruit cakes
Five inches of snow
Quick, someone kill it!
All these blessed lights
and cats running up and down the tree

The seventh thing at Christmas that really bothers me
Seven secret santas
See, it is the same one, I carved my initials in the bottom last year,
Five inches of snow,
Something's in my stocking
Three Am wake ups
Half the string won't light!
and cats running up and down the tree.

The eighth thing at Christmas that really bothers me
Eight Christmas Specials
Seven Secret Santas
Six solid fruit cakes
Five inches of snow
Let the cats get at it!
Three AM wake ups
Don't put the lights there!
And cats running up and down the tree.

The nineth thing at Christmas that really bothers me is
Nine nasty neighbors
Eight Christmas grumble grumble grumble
Seven Secret Whats?
I could drive nails with it
Five inches of snow
I'm not touching it!
Three AM wakeups
Just put 'em on the tree!
And cats running up and down the tree

The tenth thing at Christmas that really bothers me
Ten thrilling touch downs
Nine nasty neighbors
Seven Secret Santas
Lets throw it off the roof!
I'm not gonna shovel!
It's still in there
Don't even think it!
All these blessed lights
And cats running up and down the tree

The eleventh thing at Christmas that really bothers me
Eleven extra innings
You know I don't like football
We could just get even
Just turn the TV off
We can send it to Aunt Betty
I'm not gonna shovel
But that was my stocking!
Three in the morning!
Can the star go on the top?
And cats running up and down the tree

The twelveth thing at Christmas that really bothers me
Twelve covered dishes
Eleven extra innings
Ten thrilling touch downs
I guess we could invite them
We could make 'em watch the specials!
Let's get the Santas in one place
Make em eat the fruit cake!
Still not gonna shovel
I think it ate my candy
Three Am wakeups
All these blessed lights
Quick catch it the tree is falling down!
Or, on a more pleasant note a different set of words:
On the first day of Christmas my true love gave to me:

A Parsnip in a Pear tree

On the second day of Christmas my truelove gave to me
Two Turtle soups
and a parsnip in a pear tree
On the third day:
Three French Toasts
Four Curried Birds
Five Pineapple Rings
Six Goose egg omelettes
Seven Swans in Gravy
Eight Ice Creams melting
Nine Sauces Steaming
Ten tiny truffles
Eleven Pies a piping
Twelve dozen Danish

And one developed by the Dragon's brother, if memory serves me right. To the tune of God Rest Ye Merry Gentlemen:

The restroom door said 'gentlemen' and so I walked inside
I took two steps and realized I'd been taken for a ride
I turned around to find out that the place was occupied
By two nuns, three old ladies and a nurse
What could be worse
then two nuns, three old ladies, and a nurse?

The restroom door said 'gentlemen'; it must have been a joke
the room was lined with mirrors and the perfume made me choke
a lady smacked me with her bag and gave my ribs a poke
and the nuns were creeping up on either side
Oh how I cried
And the nuns were creeping up on either side.

The restroom door said 'gentlemen' it must have been a gag
she sprayed me with her can of mace and hit me with her bag
So who would give a license for a gun to this old hag
It wasn't turning out to be my day
what can I say?
It just wasn't turning out to be my day!

The restroom door said 'gentlemen' and I'd sure like to find
the crummy little creep who had the nerve to switch the sign
'cause I've got two black eyes and I've been kicked in my behind
And I can't sit in comfort and joy
Comfort and joy
No I just can't sit in comfort and joy.

Merry Christmas everybody
User Journal

Journal Journal: Solstice 4

This is the shortest day and the longest night of the year. But this year there is no ritual at my house to celebrate this turning of the wheel - I don't have the energy to get one together, to bring all the disparite members of my household together and make all that happen for us all. It is the first time in a long time there has been no ritual for this, and that is a sad thing for me. Ritual marks for us where and when we are in time and space, and brings us together to mark our unity in those moments. I guess that this time I mark a new coming of the light from a different place and I don't really know where that place is yet. I think that this heralds a new kind of strength and rebirth, but I haven't quit got there yet. This is ten weeks of Chemo and I'm sick and tired and having a bad day. I know the sun will return, I know that the Goddess watches over me, but right now, I wish for comfort and joy. I'm tired of the darkness.
This is the long night. The sun returns and the days grow longer. Joy is afoot in the world, and all we have to do is be open to it. I think I'll go light a candle. Blessed Yule everybody. Light a candle with me, and across the world watch the sun rise, and the joy of life fill your spirit.

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"Card readers? We don't need no stinking card readers." -- Peter da Silva (at the National Academy of Sciencies, 1965, in a particularly vivid fantasy)