Wednesday, February 24, 2010

My friend D is getting a community award tonight for being awesome. Some people will not like this because they don't recognize her utter fabulousness. That is probably because she does all her work undercover like a secret agent and doesn't brag about anything to anyone. That is part of her charm. I guess I am anxious with anticipation because last night I had a typical Ying dream.
I made the centerpiece for our banquet table and it was by far the best one there. A woman I had never seen before was about to present D's award to her. The woman started rambling about D's accomplishments only all the things she was saying were not true. She was just up there rambling random shit. It really pissed me off. I wanted to kick that gal in her big white ass. I just sat there stewing through the whole speech and then at the end the winner for the table decorating contest was announced. It was not our table.

Tuesday, February 23, 2010

For L

Friday, February 19, 2010

the life of the nuetrophil Deficient

Long long ago when I was training to become a literacy tutor for adults I had to take a hard look at how I thought about the non reading population in the world. I always figured if you couldn't read it meant you didn't read books and couldn't spell. It was until after going through the program that it hit me that these people cant read groceries, street signs, a medicine bottle. And there I learned how devastating not mastering that one little thing could be. They weren't stupid, Some were even millionaires they just never sat down and learned the code for reading. It was a life I couldn't imagine having been an avid reader since I was 4.

Cancer is a lot like that, You hear about chemotherapy, In transplants you hear about immune suppression to keep rejection levels down. But until you live there you just cant quite understand it. When you are born you are gifted through your mothers blood supply with an amazing amount of antibodies and a perfect new little body specially made to fight off the little things in life. If your mother breast feeds you are gifted with continued protection while you grow. From birth on every cold, flu, cat scratch, upset stomach, and other ailments you get cause the development of antibodies to protect you from every getting that particular strain again. The reason you only get chicken pox and measles once and also the reason that people who are generally healthy and don't work in group environments tend to get fewer colds and such as they get older. as least until the virus or bacteria mutates.

By the time you are 40 you have immunity to a vast array of common disease that lives in our world on an everyday basis. What helps develop these immunities and the front line in disease control in your body is a little cell called a Nuetrophil. Of which you have millions running through your blood stream at any given time on the lookout for any invading substance. Kind of like pac man eating the dots of disease. For pic go to wikipedia where the info below was gathered. The most common place you will have seen these cells is in Pus. that lovely yucky eater of infection.

A little science for ya

a neutrophil count of 2.5-7.5 x 10 to the 9th power/L is a standard normal range. Neutrophils are the most abundant white blood cells in humans (approximately 10^11 (10,00000000000) are produced daily) ; they account for approximately 70% of all white blood cells (leukocytes). The average half-life of non-activated neutrophils in the circulation is about 12 hours. Upon activation, they marginate (position themselves adjacent to the blood vessel endothelium), and undergo selectin-dependent capture followed by integrin-dependent adhesion in most cases, after which they migrate into tissues, where they survive for 1–2 days. Neutrophils are much more numerous than the longer-lived monocyte/macrophage phagocytes. A pathogen (disease-causing microorganism or virus) is likely to first encounter a neutrophil.

Low neutrophil counts are termed neutropenia. This can be congenital (genetic disorder) or it can develop later, as in the case of aplastic anemia or some kinds of leukemia. It can also be a side-effect of medication, most prominently chemotherapy. Neutropenia makes an individual highly susceptible to infections. Neutropenia can be the result of colonization by intracellular neutrophilic parasites.

Exciting wasn't it - My neutrophil count today was .7 a week ago it was absolute zero. In not scientific terms what this means is the one piece of lettuce can kill you!!!!!


Without living through it you can't understand the handwashing, the pill taking, the mask and glove wearing. The constant fear that you are going to touch something you shouldn't.

People who know will attest to my incredible lack of houscleaning skills, My running around barefoot in all forms of goo playing with molded paper clay that is so rank you have to breathe through your mouth to use it and sharing food with just about every animal known to man. And I never got sick, for years and years and years and have a most awesome immune system because I have played inthe dirt and the germs for soooo long. Now I do practice good food safety and will not cook in a dirty kitchen but beyond that I am not the clean soul. Have been know to eat at restaurants and live in houses most people would not consider habitable.

And then there was chemo. and no more neutrophil, not a a few less - none - zip - nada. Where you must wash your hands every time you use the toilet or possibly die and don't forget to wipe down the seat when you are done and forget completely about sharing with someone else unless they are goingto disinfect after every use. Different rolls of toilet paper, hands peeling from the sheer amount of sanitizer. not being allowed to open a door eat at a buffet or touch anything that hasn't been wiped down unless you are wearing gloves and if you are wearing gloves the you must always remember that if your eye itches you must go remove gloves because they are now contaminated and you cant touch any part of your body with them particularly eyes mouth or nose. the wash then disinfect and then you can scratch.

And food - there is no fresh fruit unless it is think skinned and scrubbed and disinfected and then people by someone else of course cause you can't touch it. A salad becomes a bed of unimaginable death and fast food well suffice it to say that you must take it home and re-nuke it before you can touch the hamburger bun recently slapped together by your average food handler. And children - my doc calls them horrid little bags of germs. And husbands - the other day I made a grave error. I kissed my husband on the lips - We both forgot - Then had to run to bathroom and disinfect mouth. There is no sex, clothes can be worn once and must be washed. I could go on and on and on, with all the little things like not being able to visit with or touch or hug and kiss my grandaughter without us both in gloves and masks, she is much cuter int hem then I.

And there are perks like not being allowed to do dishes or laundry but then I didn't usually do those anyway.

Like the reading you think that it is the big things that will get you someone with a cold a flu and yes those people are deadly, but they are also fairly easy to avoid with proper glove and mask use along with constant washing of the world around you. But its the bacteria you live with everyday that is most likely to kill you.

Prior to learning I had cancer I found out I had gun disease and I only learned I had it through a sheer fluke. there had never been any pain, swelling or other evidence of disease, but apparently the evil bacteria had been eating the bones and gums that hold my teeth in place for years unnoticed.

I went to the dentist did all that he told me and had been working for 3 months prior to the cancer diag to rid myself of the bacteria through various means. An I had done good the dentist would have like to still pull a few but if I kept up the regime I could keep my teeth. Then I lost those little neutro babies and what was a painless bacteria that I had lived with for years unnoticed, became a full fledged and painful infection requiring 2 days in the hospital and 10 days on IV antibiotics. It was a joy.

Most recently - like last night I made goulash nothing exciting, hamburger, noodles, cheese and tomato sauce. All cooked well and then nuked again for safety once they were on my plate. No garnish and not a fresh vegetable or piece of fruit to be had. At 5AM this morning I awoke in the most horrendous pain I had felt since childbirth. My stomach and back felt like they needed to explode and I spent the next 6 hours sticking my fingers down my throat and eating and throwing up various things to try and help yogurt antibiotics juice. Finally I killed whatever it was and it wen t away. No one else eating the food had more than a pleasant burp of enjoyment.

After the transplant I will have new blood making power and fresh new nuetros, but they wont really be mine and unfortunately they have to kill them off before they grow so that they don't eat me. Cause that's the problem with transplants they don't like being in new bodies they think they are evil and they do their best to kill them sometimes. So to help you adapt they just turn of the marauding eaters of germs with various steroids until the new dna takes a firm hold and your blood cells can become confused and think they are home. During this 100 day period everything is deadly. I don't get to be in the same room with my granddaughter or any child in the public school system. I don't get to eat lettuce or touch doors and all the people who are being kind enough to take care of me have to obey stringent rules of cleanliness. Lucky for me - I also get to lose every antibody I have every gained in my life and every bug I have ever had can now kill me. Talk about having a target painted on ya. On the plus side after 2 -3 years the new dna will be integrated enough that there will be no more problems and I most likley will not have to take suppression drugs for the rest of my life. If I am really lucky because I have such a close match I wont have to take them after the 100 days - 6 months. People who receive organs take them forever and live in constant fear of Death from a doorknob or head of lettuce.

So on March 9th this year as you are praying for me because yes it is National pray for Brandy day on MArch 9th, For those dedicated to my survival - fasting and constant prayer and sacrifices for 10 days until the 19th hoping for an early and non deadly engraftment are encouraged and allowed. I don't have to know you feel free to sacrifice yourself on my behalf. Because the better the engraftment and the cleaner the transplant the shorter time it will be until I have nuetrophils again. And can once again enjoy the little things in life like lettuce and tomato on a burger or kissing babies and lets not forget that all time favorite sex.

It is almost cruel to be hairless with no shaving and not get sex. God is laughing way tooo loud. And I would really like to know why it is that chin hairs and mustaches grow back first on women, I mean really isn't bald bad enough.

Thursday, February 18, 2010

And the Dumbasses of the day award goes tooooo

Girl's arrest for doodling raises concerns about zero tolerance - CNN.com

Wednesday, February 17, 2010

Bla for B


Unless we are facing a terminal diagnosis most people (myself included) take life for granted. We always think that there will be more time to do the things we love, be with the ones we love or finally visit that exotic location. I think that the very young are much better at living in the moment. When I was a child it seemed as though summer was so much longer and sweeter. It is probably the lack of responsibility that allow children to be children. It could be that in order to cope with our ever growing responsibilities we rationally decide that we have a lifetime ahead of us. We roll with it, and sometimes life rolls past us. We get to be a certain age and we realize that we haven't done a fraction of what we dreamt we do. At that point we either sigh and let go or kick it into high gear and make it happen. People are always saying that you have the rest of your life ahead of you, which is funny because the rest of your life could consist of the next 5 minutes before all the double cheeseburgers you ate catch up with your arteries and block blood flow to your heart,bringing on that fatal heart attack. The rest of your life could be a day, a week or a few years. We just never know.
I am not very good at living in the moment. This is something that I am working on. I cradle my youngest son like he is six week old rather than six years. I play in the rain. I repeatedly laugh at my own stupid jokes. I enjoy watching my daughter try on every dress in the store. When I make a wrong turn I always assume it is because there is something that God wants to show me.
There are things that I do wrong. I take people for granted, I don't communicate enough at times but I hope they know that they are loved and cherished even if I don't always show it. I try to learn something from everyone.

Things I've learned from Brandy

To have an opinion and feel free to express it.

Speak up for myself.

Development of my inner bitch (ok Yang gets credit for this one too).

That you don't have to be good at something you only need to enjoy doing it.

Martyrdom is just another word for stupid.

To invest in hopeless cases because what you do for them could be the only thing that may effect them enough to change their life.

All men are dumb
( Well,I actually already knew this but she helped reinforce the belief)

Fixing computers isn't really that hard I am just super lazy.

It's fun to shock people.

Buy yourself toys. (No not that kind)


I don't like to think about death. I know it's part of life, and I accept it. I don't fear it but I don't welcome it either. I am not particularly good with loss, it feels hollow and it lingers for me. I am prone to melancholy. I know the earth will keep spinning without you but I would rather you spin with it.

Monday, February 15, 2010

Worried Sick

Sometimes I feel so much like a mother! I am waiting right now by the phone wondering when my own mom is going to call me back. I just realized I haven't spoken with her since Saturday and usually she calls me by now because her and I have our girls nights on Mondays. But she hasn't called me all day. I have called her on her cell. I have called her on her home phone. I even called her at work even though today is a holiday and she is not suppose to work today. No answer. No returned phone call. So I'm just waiting..... I am worried!

Saturday, February 13, 2010

2 weeks and counting

Transplant on March 9th getting closer all the time. I am about ready - Condo has been rented and paid for check in is scheduled for March 28th where I being the Death Chemo. Or as my Doc says with way to big a smile, The mother of all chemos. Its weird I have made it through 2 chemo sessions with hardly a blip I am still working though I scare small children at the mall with my masks and gloves. And I am scared of the last wave not so much the chemo though 7 days of death chemo cant possibly be fun. and its not even the transplant that scares me as that's just little bags of red koolaid leaching into my body. Its that 50/50 chance that the graft won't take, which is worse than it trying to eat me cause eating me they cab control its not fun but can be controlled but not taking is a death sentence, since I will no longer have the ability to make anything by myself. NO blood, no white cells no platelets and no time.

I cant imagine the end but I cant see past it either. so instead I plan for the worst, pray for the best and cry whenever I think of something I may not do again.

Friday, February 12, 2010

Games

What kind of game are you playing?
We can talk, but not see eachother is what you are saying?

You either are my friend or not
You either see me or you don't

You either communicate what you are feeling
Or you can hold it all in and do the healing

I am trying to help you out here
But how can I when you won't let me have a listening ear?

I will give up soon if you do not confront this
And go on living life in amiss

Thursday, February 11, 2010

The Toad Prince


L and I went to Petsmart last night and came home with a Fire Belly Toad for her Theatre teacher. He is so precious, he even looked cute devouring baby crickets. That's about as exciting as it gets around here.

Tuesday, February 09, 2010

Bluebird of happiness


In my dream that I was in my old back yard at Manor. I was laying in a lounge chair, it was sunny outside but not hot. I was watching a vibrant blue colored bird on an over grown shrub in front of me. There were a group of them. As I was watching it I vaguely remember someone telling me that when I am observing animals, I should pay attention to a groups behavior and not an individuals. I then tried to watch them interact with each other as a group. Then for some reason I outstretched my arm n a weird position and kept perfectly still. A bird landed on me and I remember thinking that this was the most beautiful thing that had ever occurred. I felt so gifted. Then my children came and I was afraid that they would scare the bird away but it just stayed there. After the bird left I went onto the patio and asked K if he had seen the bird. He did not seem impressed. His father was there and he told me that it was the Bluebird of happiness. Then I glanced back at the shrub and red birds had taken the place of the blue ones. K's dad said they were cardinals but I could not tell from the distance.

Monday, February 08, 2010

Seedlings

We little seedlings
Grew in shallow soil
Miraculously
With little tending
We raised ourselves
Leaning towards the light
Shielded from the elements
Kept safe from weeds
God's hands were loving neighbors
With no roots to anchor us
We blew away with the wind
Landing where we could
So far apart from each other

The magness of Ying

Lives blushed
Unfair eye
Always read easily
Meet lovers
Claim heaven now
Laugh naturally
Cry night passions
Please Act
Like you care
Dead poems haven
People write life's tale
Words wanted lover
Dizzy prose
SALUTATIONS
Loves pass
Never daydream long
Smile dawn
Happy drunken him
Lose time slowly
Dreaded minutes
Valuable hours
Looking ripped inside
Wrong bed butterfly
Just two stones

Wow, that felt real!

So I woke up at 3am this morning from a horrible dream. I was escaping from my ex husband and was driving this car recklessly threw an open corn field. Finally he caught up with me and threatened with me with a gun. I told him, "Go ahead! Shoot me! I give up!" And he did. He shot me right in between my eyes. I felt the sharp pain in my skull. I felt my limbs go numb. My head felt light. I fell to the ground and I felt as if the life was quickly draining out of me. And then I died. It felt so real! Now, I imagine thats what dying feels like. It was as if my soul was escaping my body and floating up into the air. Into nothing.

Saturday, February 06, 2010

Things that make me cry

I go from day to day pretending I am not sick while knowing I am. I breeze through Chemo with everyone going "look at you you are so strong, you are doing so well, I am so sure it is going to be alright." Then there are the faithful assuring me that I am in Gods Hands or praying over me declaring me healed. While I never turn away a heartfelt prayer I am not certain I want to be in Gods hands. I think unnoticed is preferable. Maybe I can hide and he wont notice and will let me continue upon my broken path. The drive by healing is hubris, the idea that god needs anyone's help to heal me is amusing. But then so much of religiosity is hubris. Man believing God needs our help or that we have a clue what the mind of God really is. I do not fear death. I fear not getting to do all the things I want one last time. Simple things like going through the grocery store and seeing blueberry muffin mix or the bread dough I use for Christmas cinnamon rolls. I want to buy all my favorite things knowing I haven't the time to actually cook them all or the appetite to eat them. But they make me think was last Christmas my last, have I celebrated my last new year, my last trip to the beach. My last jacuzzi with the hubs, how many things have I taken for granted how many people will I never even tell goodbye.

Labels: ,

Friday, February 05, 2010

Baby Girl




Last night I went to a meeting about the Early College High school with L. By the end of it we were both pretty pumped up. This summer I could have a daughter in college. Amazing... I think that it will be a good fit for her. I hope that she is selected a certain amount of the selection process is pure luck, a random drawing. Do we feel lucky? Heck yeah we do! More than anything I just want this little girl to know that she can accomplish anything that she truly desires. My biggest obstacle with her is convincing her not to listen to negative idiots. Like her mother she sometimes cares too much what other people think. As I age I grow more tolerant but I find myself caring less and less about the opinion others have of me. When I was her age I cared a lot more.

Thursday, February 04, 2010

Bad Magnetic Poetry (and I'm not even depressed)

Live flesh
Love
Immense wholeness
Savage moons reborn
Rusty hued fairy tales
Wonderful transparent thirst
Whirling clever minds
Smoke clear thinker
Ideas climax
Dissolve
Wrapped truth SUNK
Darker clarity
Distressed surface
Dangerous restlessness
Pure insanity,confusion,hallucinations
WEEP

Wednesday, February 03, 2010

Sex and the City Quotes

"Late that day I got to thinking about relationships. There are those that open you up to something new and exotic, those that are old and familiar, those that bring up lots of questions, those that bring you somewhere unexpected, those that bring you far from where you started, and those that bring you back. But the most exciting, challenging and significant relationship of all is the one you have with yourself. And if you can find someone to love the you you love, well, thats just fabulous." - Carrie

"Maybe some women aren't meant to be tamed. Maybe they just need to run free til they find someone just as wild to run with." - Carrie

Tuesday, February 02, 2010

You all are having so much fun with lyrics I thought I would play too.

(Steve Earle)
chorus
Ashes to ashes, dust to dust
From the Steve Earle Jerusalem CD here is a link if you want to here the song
http://www.youtube.com/watch?v=qxFftlymT5M

Ashes to ashes, dust to dust

A long time ago before the ice and the snow
There were giants that walked this land
And with each step they took, the mighty mountains shook
And the trees took a knee and the seas rolled in
Then one day they say the sky gave way
And death rained down, it made a terrible sound
There was fire everywhere and nothin' was spared
That walked on the land or flew through the air
And when it all was over
The slate wiped clean with a touch
There God stood and he saw it was good
And He said "ashes to ashes and dust to dust"

chorus

Then the sea gave birth and it crawled up on the dirt
And stood up and took a look around
Said "I'm the next big thing and the gift that I bring
Comes directly from God, so there ain't no holdin' me down"
So he crowned himself king
Now no one remembers his name
But the seed that he sowed took the show on the road
There was blood on their hands and a plague on the land
They drew a line in the sand and made their last stand
They said "God made us in his image
And it's in God that we trust"
When asked about the men that had died by their hands
They said "ashes to ashes and dust to dust"

chorus

Now, nobody lives forever
Nothin' stands the test of time
Oh, you heard 'em say "never say never"
But it's always best to keep it in mind
That every tower ever built tumbles
No matter how strong, no matter how tall
Someday even great walls will crumble
And every idol ever raised falls
And someday even man's best laid plans
Will lie twisted and covered in rust
When we've done all that we can but it slipped through our hands
And it's ashes to ashes and dust to dust

My Green Mountain State!

I am dreading the summer heat. In fact I wish we had only winter in AZ year round. Or maybe I just wish the summer's here were like Vermont. Damn, do I miss it! I miss the breeze that comes with the sticky humid air. I miss the smell of pine trees. I miss swimming in the deep cold lakes or the murky ponds by the side of the roads. I miss have a cremee every Sunday. I miss climbing the at least 30 feet pine trees that were in both my front and back yard. I miss deer watching. I miss the fresh air of the green mountains!

Stand By Me

Music is what feelings sound like. It is a way in which to express your self when you are not able to.


When the night has come
And the land is dark
And the moon is the only light we'll see
No I wont be afraid, no I wont be afraid
Just as long as you stand , stand by me

So darlin, darlin, stand by me, oh now now stand by me
Stand by me, stand by me

If the sky that we look upon
Should tumble and fall
And the mountains should crumble to the sea
I wont cry, I wont cry, no I wont shed a tear
Just as long as you stand, stand by me

And darlin, darlin, stand by me, oh stand by me
Stand by me, stand by me, stand by me

Whenever you're in trouble wont you stand by me, oh now now stand by me
Oh stand by me, stand by me, stand by me

Monday, February 01, 2010

Ode to My Furnace

Heat, blessed heat, how I do love thee.
Taken for granted, when you are here,
Never missed more than when you are not.
Heat, blessed heat, how I do love thee.



(Remind me I said so in July and August when I'm bitching about the heat...)