Yoga Different

KAREN MAUTHE'S MEMORIAL SERVICE

2010-10-16T20:58:00.001+05:30

A Memorial Service for Karen Mauthe was held last Thursday, October 14th, 2010 at OddFellows Hall in Santa Fe, NM. More than 115 family and friends were in attendance to celebrate Karen's life.. The service included a mixture of family and friends telling stories about Karen and her life. Both funny and heartfelt, these stories, and the people who told them, captured Karen's spirit for all of us. The "Your Song Threshold Choir" gave both a beautiful and moving performance of music that Karen would have been thrilled to hear. Indeed, it felt as if Karen's spirit was with us all last Thursday in OddFellows Hall.

Karen's mother Fran Sanders and the rest of Karen's family, would especially like to thank all of Karen's friends that helped make this glorious Memorial Service for Karen a reality.

PEACE

KAREN MAUTHE PASSED AWAY

2010-10-10T03:59:00.000+05:30

Karen passed away at 4:20 a.m. on Friday, October 8, 2010 at Christus St. Vincent Hospital in Santa Fe, New Mexico. She died from complications due to a systemic infection caused by Severe Aplastic Anemia. She approached the study and treatment of her disease with the same intensity she applied to her yoga practice and teaching. She gave it her all.

There will be a memorial service on Thursday, October 14 at 5:00 p.m. at the Odd Fellows Hall, 1125 Cerrillos Road, where Karen’s Yoga Different classes were held.

In lieu of flowers, the family requests donations be made to Coming Home Connection, the organization that cared for Karen in the last few months of her life.

Coming Home Connection

418 Cerrillos Road, Suite 27

Santa Fe, NM 87501

For further information, contact her mother, Fran Sanders, at 505 473-5117.

the chamber

2010-10-05T06:58:00.001+05:30

it was marginally successful today. being a good student, I read all the literature before I sh0wed up for my first hyperbolic chamber session. no aspirin; no vitamin c; no creams of any kind. it just so happened that the new fissure on my butthole is raw and excruciating. so there i was in the plastic tube, yawning and blowfishing, my way through the pressure increasing and my butthole is dancing the dance of "there is no comfort." then all of a sudden, the caustophobis sets in. long story short: i stayed at low pressure for about 1/2 the time i was supposed to be in the chamber. all i could think about was a hot bath (relief for the piles). but boy was that bath good.

so i'll try again tomorrow.

take my hand

2010-10-02T00:59:00.000+05:30

just when you think that there are so many insurmountable obstacles that you're not sure you can go on, a small beacon of light shows up and hope springs eternal one more time

i went to the wound center this morning for my weekly check up. My doctor and the"powers that be" in the hospital decided that they would let me have a session (30 days!) in the hyperbolic chamber....free of charge. I cried. My insurance company was never gonna approve it.

I must admit that I'm hoping for miracles. My own tube of pressurized oxygen 5 days a week for 6 weeks. It is said to cure all sorts of issues including infections, lupis, ms, etc. etc. There is some (not much) evidence that it can stimulate stem cell production (this is what I need). If it does nothing but clear up my infections, I will be eternally grateful.

What this means is I'm gonna need rides to and from the hospital Monday-Friday. I must arrive there by 12pm and leave around 2:30pm. Maybe you all could sign up on the calendar if you can help? I should know more once we get going next week.

Blessings.
K

hospital

2010-09-29T04:55:00.000+05:30

i just spent three nights at st vincent's hospital. at least they gave me the nice room this time...double doors so as to reduce the staff giggles and the poor man across the hall two days of incessant screaming. It's very unnerving to hear someone yell like that non-stop. Luckily, it wasn't very noticeable in my double-doored room. Apparently, he was an old man who kept pulling out his IV's so they finally strapped him down and well, understandably, he wasn't happy about the situation AT ALL. Can't say I blame him. It brings up all sorts of questions of patient's rights that I tried not to ponder too much, which in the end isn't too hard when your busy sponge bathing yourself against a fever of 103.2.

Yup. That temperature is what landed me in the hospital and quite honestly, I probably should have gone in five or six days earlier when the fevers started but, well, with features like screaming neighbors, blood draws at all hours of the day and night, etc, etc, St. Vincent's doesn't quite have the allure of say, the Ritz. However, I am feeling somewhat better and maybe next time I'll recall this as I ponder my options. Or better yet, maybe there need not be a next time.

Some of you kindly wrote your favorite remedies for constipation--many of which I have tried--and I thank you for taking the time to share. I realized that my bowel movements seem to ebb and flow of the antibiotics. Change the antibiotic, change the bowel movements. This is somewhat comforting because I was really beginning to wonder if my organic body was beginning to shut down from lack of movement. After the last few days, I'm not worried about "movement" anymore...now the issue is "soreness" and dehydration. Ahh, the fun.

I'm glad to be home that's for sure.

busy dr week

2010-09-25T04:25:00.000+05:30

wound dr today: short story--armpit better, butt no change (and ugly)
reality: fevers of 102.5-103.2 for the last few days. they said if they continue i will have to be admitted
platelets today
blood tomorrow (lunch anyone? call me?)

inquiry: i've been constipated for 3 days. tried triphala, prunes, and my butt smells like a dead cat (not a good sign at all) anyone got the "this'll work in a flash" trick. email me at fieldofcosmos@gmail.com

miki the amazing japanese shiatsu practioner

2010-09-23T01:25:00.000+05:30

in japan, one has to go to acupuncture and shiatsu school for three years to qualify for a license.

remember that book/movie "memoirs of a geisha"? how the young women were pure, gentle, yet firm and graceful. (forget about the sex part please)

combine over 8 years of expertise and the lovely strong energy of an exquisite Japanese woman (who just moved here with her husband Ted) and you get Miki.

She has kindly offered me sessions over the summer (so yes this is a commercial break). if you are interested in hearing what she offers, please contact her at 505.946.8493 or matsumiki@hotmail.com.

she's wonderful.

rain

2010-09-23T00:56:00.000+05:30

i listen to the rain while my sunflowers hang their heads in harvest. the birds have been frequently checking then devouring the ripe ones.

i knit and then reknit a hat for a friend which i hope will fit her. its too soon to tell. although im on version 7 already.

my wounds are perhaps slowly improving though they bother me with their ouch constantly.

i can imagine the aspen trees beginning to turn on the mountain, my favorite time of year in nm.

one day at a time (as the taxman lingers in the shadows)

if it's not one thing....

2010-09-20T07:57:00.000+05:30

it's another
so some of you may have noticed that i've been indulging in the end of summer fruits as of late....i seem to have a never ending craving for pineapple....

well the fun is over (ie don't bring me anymore fruit please). i have a new outbreak/infection of some kind down below in a very suspicious location reminiscent of earlier summer infections. So I am not allowed sugar. Again. For all those that think I'm just being picky, well, when I let up this is what happens. My true hope is that it will vanish by morning, but I'm gonna talk to the dr. nonetheless.

So enjoy your sweet root vegetables and yummie fruits and I will give away what I have and dream of the day that I might be able to eat these things again.

Grains and greens and protein. That's my diet, if you are interested. Love and light. k

No help Today (Saturday)

2010-09-18T22:02:00.000+05:30

Apparently I have no helpers from coming home connection until 4 pm today. Let's face it--I'm already hungry.

If you have some time, call me and maybe you can come over and help......

karen
690-1021

a cleaning dilemna

2010-09-17T07:43:00.000+05:30

so over the summer someone kindly sent their housekeeper over to deep clean my place every now and again. it was wonderful.

the number one rule of aplastic anemia is keeping things clean, really really really clean: house, food, etc. I am so prone to infection and have been down and out with infections all summer.

my helpers from coming home connection kindly sweep the floors, wash the dishes, do the laundry and manage the bathroom. they do a great job. but it's hardly a deep clean. the floors have not been washed in over a month.

there is no way i can afford a housecleaner. point blank. nor can i or should i do it myself. yet, i hate to live this way.

so i guess i'm asking for volunteers who can spare an hour or two or whatever to help tidy things up. you could sign up on the calendar like old days. i have vinegar, baking soda and sponges. sadly i do not have a vacuum. please help if you can.

love and light.
k

revolving everything

2010-09-14T07:48:00.000+05:30

revolving dr. today (dr. scott temperly who was my first dr when I got back from Seattle). She sits down next to me and asks "what is the goal here?" "To beat it" I said. "didn't you read the book I gave you?"
(aplasticcentral.com). She said she skimmed it. That was all she had to say.

thanks to emily, the sept and oct calendars are up and running. i need a ride from the hospital at some time in the evening on Wed pm (this week, not sure on time due to transfustions) and i need someone to take me to dr appt fri (this week) at 2:30-4.

any takers?

z update for z day

2010-09-13T23:38:00.000+05:30

dr appt this am. hemoglobin 7 (think dizzy and hard to breathe) and platelets 15!

so today would be day 5 on the platelet schedule....i'll get blood and platelets on wed....ie platelets are holding a little bit better, a little longer.

still it ain't anywhere near the 150 platelet or the 15 hemogloblin minimum they consider "normal"

but i'm happy to take it. maybe next week it'll be 8 days between platelet transfusions. then we'd really have something to write home about.

new horizons

2010-09-11T20:10:00.001+05:30

it was a busy week. dr appt and platelet transfusion on Thursday. wound dr. appt on friday where he "removed" all the dead tissue around the would. think small metal tool like an ice cream scoop, i forget the name of it. think ouch. but the dr. assures me that the new flesh will now grow in better--even though it looks worse. of course, i haven't actually been brave enough to take a look yet. that might have to change this afternoon when I have to redo the dressing. ug.

in the meantime, i've decided to knit again. a good time-consuming practice that encourages all of my obsessive tendencies and great meditations. i become a bit obsessed with those there knitting needles. not that i have any real talent or knowledge....i was looking up recipes for some fancy hats yesterday and realized that i am not at all versed in the language of knitting nor does my skill set extend much beyond k1,p1. maybe i'll decide to learn someday but for now, all i want to do is knit me a new winter cap. it is, after all, starting to get cold out there. i'll let you know how it goes. last time i knit a hat, i had to knit and then reknit the hat about 5 times before i got the size right (ie a very long project indeed). if anyone out there knows a good way of telling how many stitched to cast on to get an appropriately sized hat, please let me know.

wounds

2010-09-08T02:12:00.001+05:30

i woke up at 4 am with shooting pain in my swollen lymph node under my armpit which had decided to break and pus up and scab over the weekend. the armpit situation got progressively worse over the weekend. i even rang the emergency room at the hospital to see how busy they were...and of course being on hold for 30 minutes quickly answered my suspicion: avoid the hospital over labor day weekend at all costs.

i took an early morning bath while my very sweet helper dragged himself outta bed to change my bedding. From a conversation I had yesterday, i've re-fallen in love with the idea of grapefruit seed extract as a fantastic antibiotic so my bright early morning idea was that I would spread the stuff all over my wounds. I even did it IN the bathtub to test to see if I would be okay (the theory being that I would wash it off immediately if it wasn't). everything seemed to be okay. I dried off and dragged myself to my happy fresh bed. being the extremist i tend to be, i added a little more grapefruit seed extract for good measure--after all, if a little bit works, more will work better, right?

WRONG. within ten minutes both the cellulitis leg and the armpit sore were red and itchy. unbearably itchy. so itchy that i took another bath. now one of my usual treatments is a goldenseal paste that cools my owwies. so i applied the paste, gauzed it up, and turned the lights out in hopes of getting a few more hours sleep. OMG. Lemme tell you. within a few minutes, the leg and armpit were screaming itch and I, the "I don't like to take drugs" girl, was hastily swallowing one benedryl whilst seriously wondering how many I could take at once without death. luckily 15 minutes later, the itch subsided enough that the drowsiness took over and I fell back asleep. Whew. close call.

luckily, i had a dr. appointment early this morning. the good news is my platelet count wasn't too bad...probably will need transfusion Thursday or Friday but that is a slight improvement over my usual five day average. the doctors both squeamishly looked at my sores and I suggested that perhaps I could go to the Wound Center. One doctor suggested Dr. Lindsey at the center.

Praise Jah! Dr. Lindsey was the first doctor who actually really took an interest in my situation, bless his heart. We ended up draining--scapel and all--the armpit wound in hopes that this will heal faster. No baths. Wish me luck.

sunflowers

2010-09-06T08:31:00.000+05:30

when i moved in in the beginning of august they were giant happy sunflowers smiling at me through my bedroom window.

now they hang their heads heavy with seed, a few remaining yellow petals drift slowly to the ground as if to say i'm thirsty.

sadly my neighbors whose property they live on rarely water them and they sky has been dry for weeks.

i am waiting for the birds to come and feast on their seeds when ripened. soon. very soon.

SOMETHING AMAZING

2010-09-03T19:55:00.002+05:30

http://www.wimp.com/merenguedog/

I'm on different antibiotics since my visit to yet another doctor yesterday, but these ones appear to be working. The leg (and consequently my outlook) is much better. A small bump in the road......

backsliding

2010-09-01T20:33:00.000+05:30

it all happened at once. i was feeling better then i was not. the fevers started yesterday afternoon just as i was considering going outside for the first time in a month, wondering if i could navigate the house stairs (which might as well be bars), praying that the sun might last long enough that I could see it.

the culminated efforts of fighting against constipation resulted in the opposite...the runs. At that precise moment the cellulitis on my leg decided to kick in full throttle, thus making running (or walking even) impossible. I called the on-call dr last night, he prescribed a new antibiotic (with added bonus of side effect: the runs). While I hate to be on it, the pain and fear of the intense pain previously experienced with full throttle cellulitis inspired consumption. it was a good choice, leg still hurts alot this morning but at least i can get to the bathroom.

and now i'm going to b bad and eat gluten and sugar in the form of an apple tart from sage bakery. sometimes a persons gotta go wild (lets just hope the candida doesnt)

my food reality

2010-08-31T08:09:00.001+05:30

the coming home foundation has literally been a life-saver providing me with 24/7 help. the nurses and caretakers have been fabulous.

it would seem that they are also extremely busy right now with many patients needing care and are having a difficult time staffing. if you need work, you might consider calling Glennys at 988-2466. I believe they may be hiring and then you could get paid to hang out with me!

since i'm feeling a bit better than before, they asked me if I would be able to have a few breaks from help during my day. so long as it's only a couple of hours, I said, that would be fine.

well reality has it that there are sometimes large blocks of time (7 hours the other day!) often during mealtimes that I do not have help. this is a huge bummer. and often times I don't know when help will be arriving ie what time. this is especially inconvenient during dinner hour. i can walk to the frig with a tremendous amount of effort, but making anything beyond toast is not an option for me at this time. it simply hurts too much.

so i guess the point of this blog is that....if you might be available to help out with dinners for an hour or two occasionally that would be fantastic. i generally have loads of food here but pickup is also an option. let's face it: at 89 lbs I can't afford to miss too many meals. Or if you need a job, call them.

coming home is surely doing the best they can and i am eternally grateful for the help. the gaps are the problem

thanks. love you all.
karen

product review

2010-08-27T22:51:00.000+05:30

first there was colon tone. then there was what my friend termed "colon blow." Magnesium oxide compounds with a healthy dose of vitamin C and a apple cider vinegar chaser. Oh the cocktails one will try when necessity calls.....

I've spent alot of time in supported halasana (upside down for those non-yogis) to try to get things moving.

The truth of the matter: when there's fire in the hole (or this case piles), the system simply shuts down and backs up.

mercury

2010-08-26T08:00:00.001+05:30

woke up every hour last night with a mouth full of blood. its more emotionally disturbing than anything. i can deal with the grossness of it. it's the reality check that platelets aren't holding yet and this is the real deal....just in case i had persuaded myself otherwise.

called the dr. this 7 am to order platelets for today instead of tomorrow, happened to be my dr on call, he apologized fir not telling me he was leaving for a month after i mentioned that i didn't dig the revolving dr thng. got platelets in sparkly new private room at outpatient services, which is now open on weekends. so we can hopefully leave 2200 west behind forever. this is great news. clean, sparkly, new versus old, filthy and well what can I say, tainted with bad memories.

while transfusing, i got text saying power at house turned off by pnm. i arrive home, cell phone arrives, can't charge it cuz no power. mercury retrograde. ug

good news: with faxed dr note they turned power back on. whew.

exhausted from last night and hospital trip. love u all.

The Void

2010-08-25T07:57:00.002+05:30

Is anybody out there reading this? While my own personal attendance to the blog was pretty spotty in July, I'm beginning to feel like I'm writing to the Void. Not that it really matters, but every now and again I wonder.

Dr Update: The two week shot did exactly Nada, though the Dr. agrees that I am more or less stable. We will see what happens when I stop the antibiotics in two days. Fingers crossed that I can hold my own because I am now 1000% certain that my hemorrhoids, which have sadly decided to blossom as of late, are most definitely an adverse reaction to the antibiotics. Being an extremely sensitive and bodily aware person, I can feel them growing as the iv enters my arm. Of course, the Dr. believes this is absolutely impossible. I'd like to teach him yoga someday.

Now. Here's the catch. He casually mentions today that he'll be out of the office on Friday and he'd like me to see Dr. so-and-so instead (here we go---my favorite game: the revolving doctor game). As we are driving back from the clinic, it occurs to me that the last time he said he was going to be away on a Friday, he went on vacation for two weeks. So I called the scheduling girls back and asked how long he was going to be away only to be told 3-4 weeks!!!

WHAT? At least the fellow could have told me that. At least he could have asked if there was another doctor with whom I would prefer to work with instead of slepping me off to the nearest one to his office...or however he chose it. Where has common courtesy gone? Where is the communication. Mercury retrograde? It simply slipped his mind? Or was it a planned conspiracy?

So I called the office for the umpteenth time, talked with his assistant (who didn't know he was leaving at all) and some other person who seemed to have slightly more concern about the situation. At the very least, it would seem like I should get an email to contact him if something comes up. I keep having to explain the wife swapping scenario to these people---you might like someone else's wife better but it could just as easily end up ugly.

I'm not really interested in a flurry of comments and emails saying "accept" the situation. I accept it. I'm not angry. I am astonished.

As a nation, are we so harried and rushed that even our most basic services, and in my case life-saving services, suffer from lack of communication? It has been called the Era of Communication. We have more ways of communicating to anywhere across the world in an instant than ever before, yet are we too busy texting someone about something trivial to have common courtesy to the people surrounding us in the present? That perhaps, I have to beg to be able to wrestle an email address or phone number of my primary doctor when my life is on the line??

It seems incredulous.

New Cell Phone On It's Way

2010-08-24T06:11:00.000+05:30

Ok. Apparently even people in New York are mentioning how annoying it is that I don't have a cell phone that works. I really do have legitimate excuses for this lack of communication ability and I am doing my best to rectify the situation.

First and foremost, apparently my MERCURY is ALWAYS in retrograde. For those of you that have known me for any length of time, you must agree that I periodically have electronic meltdowns usually during a regular ole Mercury retrograde that are darn near unbelievable. I have a new mantra that I get to recite every Tuesday morning to rectify my Mercury. With God's speed, I hope.

Recent history in point:, the water bottle fell off the car seat opened and then drowned my cell phone which made a sad little beeeep as it died. Then I got the iPhone, courtesy of my employer. At first I was scared to death that I'd kill the $400 phone in a week so I spent a fortune buying a plastic case that had similar characteristics to Fort Knox. That protective case could be thrown (accidentally of course) 10 feet away and while the case might break and scatter, the iPhone inside was always safe. I had a few of those cases. Unfortunately, the case did not survive the nursing assistant topping over an entire 1.5 liter of water directly onto the phone recently. Hence the bubbly sound when I leave you all messages. And, no, the hospital insurance simply does not cover cell phones (but they will kindly replace your bifocals should they break those).

Then what small amount of life the iPhone had left has been nearly extinguished by the thick adobe walls and terrible AT&T service in my new house, where I've been living for a little over two weeks. I must admit, the telephone conversations have been shorter....most people get about 30 seconds of reception before the phone dies out. Sometimes I'm able to call you back on my helper's phone, but I actually have kinda enjoyed the succinctness of my phone conversations. I love to see you all in person so much more.

Then, of course, right before my long hospital stay before the move, the security system on my lemon-of-a-computer started flashing notices that it was time to renew. As some of you were aware, I was not in my finest form during this period and while I managed to purchase the new security, I failed to notice that I didn't install the virus protection. So after I returned from the hospital, my computer decided to join the virus brigade and well, straight up quit. Flat out...f**k you....I'm not even going to turn on, which of course pointed out my error in installation. And so, at this point, I have the bubbly cell and the virused computer. DOWN DOWN DOWN. God telling me to shut up and rest already? Perhaps.

Long story short: a very kind person offered to spot me a new computer. Another very kind person ordered me a MacBook. It arrived and in the meantime we found a better deal and I realized that the first computer did not come with a warranty (which is an impossible place for me to live given my track record). So we returned computer #1, ordered computer #2 with warranty, which of course then took EONS to arrive and well, long story short, I've been online for just a few days.

TODAY was the day I made a decision on best cell phone purchase. A no contract (might as be realistic here) cheap plan with a cheap phone that will hopefully have reception in the house. By tomorrow night, I should be up and running with the same phone number.

Dr Appointment #1056

2010-08-21T04:26:00.000+05:30

Ok well maybe I have quite reached the 1000 mark, but it sure feels like I've had a fair few trips to my doctor's office as well as the hospital.

I limped my way today to the car without tears....a notable improvement in my overall existence. My sores have notably improved since Monday when I took the two week Neutrapren shot which meant to my mind that, my God, maybe their medication actually worked! However, today's blood count indicates a very different story: Neutrophils 0.0. The Neturapren was supposed to boost the Neutrophils (cute alliteration, eh?). Neutrophils are the WBC that help you fight infection. So when I mentioned that the sores seemed to be getting better after the shot in spite of the counts, my doctor suggested "well maybe all the firemen are at the fire." Seems like a cute colloquialism, but seems to me the satellite (ie the blood count) outta be able to see how many "firemen" (ie the neutrophils) there are.

This afternoon it dawned on me: since about Monday I've been dedicated to taking at least 10,000mg of Vitamin C per day. I read somewhere that there was this study long, long ago where they administered 10,000 mg Vit C per day to the platelet-deprived and their counts went up until they stopped taking it, then when they resumed their counts went up again. Vit C seems alot less harmless than my other options.

As an exercise in meditation (please join me here), I found my 2008 blood counts (when I was a healthy young thing) and made Crayola reminders to paste up on my wall. So, if you all don't mind, write these numbers on a card, put them on your mantle, memorize them, or simply read them now until you forget them in about .12 nanoseconds (might as well be realistic). Here's what we are looking for:

Platelets: 250,000
White Blood Cells (WBC) 8,500
Red Blood Cells (RBC) 5 million
Neutrophils 73%

Don't drop your hat when you see today's numbers:

Platelets 2,000
WBC 800
RBC 3.18 million
Neutrophils 2.6%

SO yes, I had a platelet transfusion today and my doc wants to add YET ANOTHER drug to my regimen. A drug, whose name is written on a piece of paper across the room which seems really too far away for me to do anything about it right now, that is supposed to stop the bleeding of my mucous membranes on any of the numerous orifices on my body. If we can STOP the bleeding when platelets get low, then I can have more time between transfusions, which effectively could extend my life. It is a race--body must cure itself before body reacts to all blood products leading to death. So says the cheery medical establishment.

I'm gonna look up the drug, the side effects, and talk to dear Marla--a former AA survivor with numbers that looked like mine on this path to see what she thinks--before I agree.

back online

2010-08-20T03:24:00.001+05:30

Every now and again, usually during a Mercury retrograde, I have a complete electronic meltdown. This clearly describes my last few weeks....from the moment that the nursing assistant at the hospital spilled water directly on my iPhone (and no, sorry, the hospital will not cover this) to the moment that my limping computer came to a complete stop due to virus infection. Infections, infections everywhere I look: my phone (ok well maybe just a good old fashioned drowning), my computer, my leg, my armpit, my buttocks in a multiple places in a major way.

My doctor showed up again after what seemed like a two week hiatus where he was "unreachable". To me, this revolving doctor thing is not only unpleasant but potentially life-threatening. After all, you can't just swap out your wife for wife 1,2,3,4,5 or 6. I mean, you might like wife 3 or 4, but there could just as easily be the murder of wife 1. We all have our preferences. So why is it different with doctors?

Long story short: according to Dr. Synder, the three shots of Neutrapren which yielded no results, was not a long enough trial period. According to Doctor 3, who was on call at the hospital when I was there and Dr. Synder was probably laying around on some beach with his cell phone locked away in his hotel safe, three shots was enough.

And so, this past Monday, Dr. Synder and I agreed that I'd try the two week version of the same drug. A timed-release drug. Now I am absolutely no fan of allopathic medicine (unless it would work already, darn it) but you gotta admit that this is pretty impressive. Somehow or another, a little bit of the drug is released into my system every day for two weeks? I mean I should probably stop writing and visit Wikipedia and tell you how it really works, but quite frankly, I'm not sure I really care for the details (after all, I could have just injected myself with some kind of plastic that slowly lets out the drug, or, well GOD knows really and those of us with overactive imaginations might as well simply NOT THINK ABOUT THESE THINGS BECAUSE IM SUPPOSED TO BE FOCUSED ON HEALING.

I took the shot. It would appear that some of these sores all over my body got a bit better after the shot. Tomorrow I will have a complete blood count (CBC) and we'll find out if the numbers reflect improvement. In the meantime, let me just correct the record by saying that my fantasy stationary bicycle idea was more of a whimsical pondering induced by hope, boredom and most likely the stuffiness of my afternoon bedroom. I can't sit down AT ALL or IN ANY WAY due the buttock issues and as one friend kindly pointed out I was perhaps not quite ready for a bicycle seat. Oh yeah. I guess there's a point worth noting.

New news and a request

2010-08-10T21:24:00.002+05:30

New address: 151.5 Duran St santa fe

Mailing address: po box 32584 santa fe nm 87594

I moved into my new place a few days ago. Thanks so much to everyone who helped move me. It was a long day.

The new place is ok, though my cell phone gets shoddy reception so if you ring and you don't get me, please leave a message.

I'm feeling a bit better overall. Three more days of iv antibiotics and a doctor's appointment on Thursday. Haven't seen the fellow in over two weeks so we'll see what he has to say.

Marla also tried Neutrapren with no results.

The good news: Friday platelets 7. Sunday platelets 3. (wanted platelets 150) that said it would seem that they didn't drop their usual 10 per day...maybe just maybe my body is producing a few on it's own.

REQUEST:
Anyone got a stationary bicycle they're not using? I can't walk well yet (cellulitis in the leg), but I think I could bicycle.....

Apples pls

2010-07-30T06:59:00.000+05:30

In hospital again. Fevers. Won't seem to stop. Iv antibiotics. Dr wants me to do treatment to c if we can. Boost neutraphils. I'm thinking on it.

Green apples and raw almond butter please. 2203

if I do treatment I b here few days at least. They say flu symphtomsbut I have anyway

ok cell. Broken.I'll do the besti can to answer. Need food while here
thx & love
k

Thank you for organizing

2010-07-25T17:51:00.000+05:30

The 24/7 care at home is now key for my continued survival. These people are angels. That's really all there is to be said.

I spent the night in hospital getting platelets and blood. I need extra blood this time because I'm bleeding vaginally.....something that must stop in the near future.

It's the 25th and in spite of my best efforts I am getting a little nervous about my upcoming move out date of august 10. If you know of a great rental please let us know.

Thanks for your continued support. I am determined to fullr recover. Love and light.

Home & new food list

2010-07-21T23:43:00.001+05:30

I'm soooo much happier home. I have 24/7 help, at least for the week....which I could not do without. My leg still hurts but with honey and cilantro treatments the redness is mostly gone. It is still swollen and unable to bear weight. Thank god for my grandmas little scooter walker so I can at least get to the bathroom.

There's a hole in my buttock. This I could do without.

Food update: I'm onto solids again. Think whole grains, whole beans, salads cut small as chewing still an issue, protein ie small chicken or fish . I should just drink the bone marrow soup so if u made me some drop it by. I'm gonna hit it like medicine instead of asking u try to mask it for me. I'll try to drink 1/2 cup per day

Going Home today

2010-07-20T20:38:00.000+05:30

I've been in the hospital for 8 days and home seems like a distant, albeit almost over, heaven. Thanks to friends and family I will have 24/7 care, at least for a little while. I will continue my iv antibiotics and my constant tending of cellitus leg, and very sores in and around my anus. These are the worst because I can't lie flat on my back or sit very well and well standing is difficult because the blood pressure in the cellitus leg is hugely painful. Ug.

That said, I have my deceased grandmothers fancy red roller walker to help me get around. The constant cilantro poultices are, I'm absolutely certain, what's making the cellitus better. I will happily!!! pay for the organic cilantro if you will make it and drop it off at the place.

How to make: 6-8 heads washed organic cilantro, blend or food process to as close to baby food consistancy as possible, use as little water as possible. Deliver. 33 cloudstone drive

platlets 26. WBC .8 netraphils 1%
not tooo bad

oh and I'm eating solid foods now! I'm hungry! Please continue to help feed me! Veggies, grains, cooked beans, chicken, fish, etc. Still can't have spicy or hard to chew foods. Love you all!!!
love you all

Cilantro plea & meditative thoughts

2010-07-20T00:09:00.000+05:30

I don't seem to really sleep anymore...certainly not at night. It seems to be when I'm trying to manage whatever current symphtom is the most overwhelming.

Right now without a doubt that would be my 3xs swollen red hot right leg. It's called cellitus and cilantro poultices. Do seem to be working. This is a call for cilantro paste. U need 6-8 heads organic cilantro, put in your blender, think baby food, deliver. I really can't have enough of this so please if u have the time! Rm 2203

while I don't sleep, I do focus on breathe and spreading healing light throughout my body and last night it came to me that the total transformation of every aspect of my being simply means letting go and being totally immersed in the present. It wasn't a thought but rather a feeling of absorbsion. Breathe. Focus on the heart light spreading within. Breathe. It's not so complicated and intellectual as my monkeymind likes to make of it.

On that note, I'm beginning to crave very soft but solid foods. Call befoe cooking? Congees ESP teff for breakfast very good. Thank you.

EGO? Confirmed..

2010-07-18T22:36:00.001+05:30

WBC 0.7 ANC 0.0 hgb 9.3 plts 6

So as many of you know, my decision to forego Western medicine treatments has not been an easy one for me to make. I know many of you disagree with the natural path I've chosen--even though I'm currently still in the middle of hospitalized antibiotic treatment. A necessary (if only for the painkillers the first few days) delay in my wholistic treatment.

For the first time ever, i was happy that the doctors routated.

Meet dr schburt, a vetern oncologist who has clearly been around the block a few times.

His transfusion strategy: unless your bleeding, let your platelet level hang out at 1. Let your hemoglobin get to 6 before transfusing. Stretch out this transfusions to the max.
I like it.

I have been lucky enough to truly befriend one of my nurses here who agrees with my chosen strategy. She has 25 years experience watching both successful and not successful bone marrow transplants and agrees with that NIH study that concludes only 50% make it five years later.

Here's my ego confirmation kicker: In private conversation with dr. Schburt...let's just say dr schburt doesn't think I'd make it through a transplant either.

I feel confirmed, releived that in spite of all my second guessing and internal debating, the truth is clear. There is only one way out of this and it's going to require complete transformation on all levels of my being.

It is both a terrifying and liberating realization.

There are not words enough to express my gratitude to all of you out there contributing in whatever ways you can. I love you all.

Systemic blood infection

2010-07-16T19:58:00.000+05:30

I don't know what that means except for alot of antiobiotics. And cellulitis on thr right low leg---now here were talking serious pain. I was on a narcotics spree for my first few days here--but have now come to my senses and and whimpering sometimes loudly in self pity instead. I'm using the tv for drug so u have dvd please bring.

Diet clarification for now NO MISO
veggie broths light and small quantities (but frequent) help me alot
the congees
1/4 cup nongluten organic grain
4-5 cup good water
cook 1 hour
let sit overnight
cook 2 hours in am

u can add veggies at end or cook those separately and bring as a side. This mAkes alot. I eat alittle so pls keep the bulk & add to soups.

How am I? Tired. Uncomfortable. Determined throughthe grace of god to get through this.

Thx for ur help

I'll b very happy.

Against Medical Advice AMA

2010-07-12T00:34:00.000+05:30

I left the hospital after my platelet transfusion and before they Iv d me with antibiotics. They dismissed me ama which means insurance won't cover the visit.

I have chosen to believe the following: if I am going to really heal, the body must learn to heal itself. Fevers are a good thing because it is the bodys way of fighting. I am taking natural antibiotics at home and while I am pretty weak, this is a much better environment for me than the noisy dirty and uncomfortable hospital.

None of these choices are easy. Marla has been a great support. I spoke with her last night. She too fought the fevers at home.

Barley miso is out! Pick any South River kind that is gluten free please. Barley has gluten and it has been well documented that gluten and dairy are no-nos for autoimmune diseases. Which means sadly that ghee is also out.

The Whirlwind of Dietary Shifts

2010-07-09T01:30:00.001+05:30

Ok. I know it's like trying to nail down a whirlwind...my current diet of the week.

Thank you all who spent time feeding and/or cleaning the juicer.   The juicer is going to take a rest for now.   Apparently juicing and fruit of all kinds can thin the blood.   A situation that I don't need at this precise moment....I am currently trying to control the bleeding I have going on.

So here's the current plan for this week, from the recommendations of a Nutritionist of 30 years with whom I am consulting:

LUNCH & DINNER: Have ORGANIC 2 year (at least) Barley or Sweet Brown miso soup for lunch and dinner every day (miso is a fermented food that is a natural antibiotic and also removes radiation and virus from the blood – use only 2 year old or older miso)

Get a good macrobiotic cookbook and use the recipes for a simple miso soup. I prefer the brand "South River" Miso (found at Coop & Whole Foods) for the following reason:

"Miso has the aility to absorb toxins from plastic containers and should e transferred into glass, wood or enamel for prolonged storage. The same holds true for other fermented foods and all oils. Discard the miso that is stuck to the plastic"

Healing with Natural Foods by Paul Pitchford

BREAKFAST Have whole grain porridges daily

a) Put 1/4 cup of whole grain e.g. millet, brown rice, whole barley into a pot (a double boiler works great).
b) Add 4-5 cups of filtered water or twig tea, 1/4 tsp of sea salt per cup.
c) Cook for 1 hour before bedtime. Turn off and let sit overnight
d) In the AM cook another 2 hours, adding water/twig tea if necessary
e) Serve topped as you wish with cooked vegetables e.g. carrots, corn, peas, lentils, butter, etc)
f) Garnish with the sea vegetable, Nori. Produces 3-4 servings

So if you wanted to help me with getting the congee started (ie the pm part) here at my place or if you wanted to bring it over with you, that'd be spendid.   This process is alot for me on my own.   Stovetop cooking is preferable.

PS. Everyone that I speak with--doctors, healers, AA survivors--insist that ALL FOODS must be 100%ORGANIC.   I hate to say it but I do not believe that Trader Joe's offers true organic food so if possible please chose foods from our other wonderful venues: Natural Grocers, Wild Oats or Whole Foods.

Thank you for your continued help.

Emails from AA Survivors

2010-07-07T00:18:00.000+05:30

As promised, here is John Hopkin's response to the information circulating (guilty as charged):
http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1016

On a brighter note, here are some questions I asked and answers I received from AA survivors who did it naturally, based more or less on the Gerson Therapy (http://www.gerson.org/):

1. If you were to be diagnosed TODAY with AA, knowing what you know....what would your diet look like TODAY? what foods, herbs and/or vitamins would you do? which ones would you avoid? I know we're all different, I just wonder what you would do...having already tried many things.

BRUCE: Grains, greens, beans, roots and fruit - Dr. Sherry Rogers, MD and Environmental Sensitivities expert, suggested 50% grains, 25% greens and 25% beans. Then compliment that with carrots and fresh fruit. I juiced organic carrots for about 6 months and was on the grains, greens and beans diets for about the same amount of time. Bruce also highly recommends seeing an allergist and specialist in Environmental Sensitivities to find out any allegies I might have.

MARLA: If I were to get diagnosed today what would my diet look like? Hmmm. That might take some time to document, but at first blush, I would not go completely vegan like I did in the beginning. I notice personally my body works better when I have some animal products. Doesn't mean you need a ton, just some every so often, like in one meal a day. I would probably go back to juicing about 4 to 8 cups a day, and do mostly greens than carrots. I think I over did the carrots and go a bit orange in color skin-wise. I would probably do daily potassium broths. Have you heard of Bieler's broth? I would go along those lines and may also combine that with a bone broth. I would not go completely raw like I did at one point, but do some raw and some cooked. I think there is benefit to both cooked and raw foods regarding live enzymes and also depending upon how well your digestive system works. I would go easy on anything sweet, but make sure to include salt when necessary since that is important for the adrenal glands. I would make sure to get seaweeds in each day for microminerals. And of course as much of my foods and juices would be organic or biodynamic. Avoid chemicals as much as possible. Get some sunshine and fresh air each day. Walk each day if you can, and balance up time to down time. That is, make sure to get enough rest to make up for the time you are up and around. The body needs some down time to regenerate and heal.

So those are my thoughts at first blush. Oh, if you find that you react negatively to anything, avoid them instead of trying to get yourself to acclimate to them. Find things that make you laugh since happiness boosts the immune system. If you're inclined, I would also recommend rebounding. I think that helps to get the cells flowing in areas that don't normally get movement. The herbs I would take would depend upon my current symptoms like if I feel tense or restless or sleepless, etc. I would avoid taking too many foods that might thin my blood too much like too much garlic and onions. It's okay to have some, but I tend to use a lot, so if my plts were to get low, I would cut back on them just to make sure I didn't cause easy bleeding. I would also be moderate with spices. Some spices help to stimulate the function of the liver, but too much makes it sluggish. So moderation with spicy stuffs.

2. Did you follow all the Gerson vitamin protocal? Potassium, Niacin, etc. etc.

BRUCE: I do an infrared sauna at least every other day and take the following vitamins
Before a 45-50 minute sauna: Recancostat, Niacin, Alpha Lipoic Acid, first Tyler Multiplex -1 Without Iron, , first 1000 Mg C, Glycine
After: copper, folic acid, B-Complex, Liquid Magnesium, Cal-Mag Citrate, E-Gems, Second Tyler Multiplex -1 Without Iron, Second 1000 Mg

MARLA: No, I did not follow the Gerson vitamin protocol. Being that I didn't follow their protocol, I don't feel qualified to judge how good it might be.

3. This is perhaps the most important question. You said that your platelets began to hold. How did you know they held? If you got a reading of say 4, would you just put the transfusion off a day and see if the next day read at 4?

BRUCE: By holding, I guess it was that they stopped going down at every visit. It was a long time ago, but I seem to remember that they finally stabilized at about 8 and have not been below 10-15 in a really long time. For most people that is unacceptable but for me I seem to be able to deal with it. I do try to get the fresh air and exercise as I mentioned, I try to avoid stress and I do not exert.

MARLA: My hemo and I had an arrangement wherein she provided me and my procedure center with standing orders. What that consisted of was a form letter/order sheet that gave the procedure center permission to transfuse me whenever my CBC showed my hgb below 8 and plts below 10K. I would go into her office 2x a week for a CBC at first to see my counts, then I would make my own transfusion appt with the procedure center. As I got a better feel for my hgb transfusion needs, I started to get CBCs weekly. So when I started to feel that my counts were holding in the 4K-8K range, I would hold off of transfusion as long as I could before the next CBC. For instance, if I went in and my hbg was 7.5, but I felt that I could manage, I would not schedule a transfusion and gauge day by day. If the next day I felt I needed the blood, I would make an appt for the next day. Being that I had my CBC in hand, I didn't need to see my doc to decide this.

4. Which blood counts recovered first for you?

BRUCE: Red Blood Cells first, then White Blood Cells and Platelets are still only at about 15-20 but it works for me. Bruce has been transfusion free for 8 years.

MARLA: WBC, RBC then Platelets

So I know my dietary needs seem to change daily.   I just spent most of the last week as nearly vegetarian (I know my acupuncturists are rolling their eyes at me right now)....and well, I think that perhaps a little animal protein is in order.   The issue is this: my liver is struggling to detoxify the body from whatever it was that I was exposed to.   Animal proteins tax the liver to digest.   Yet while I was drinking more bone broth two weeks ago, my red blood cells lasted 17 days.   As a more (not totally) vegetarian, they lasted 13 days.   So the experiment continues.   Please stand by.....

In the meantime I am consulting with a Nutritionist of thirty years who has training in both Eastern and Western methodologies.    If I could only open the files she sent me.....I've totally destroyed my Microsoft situation. Ug.

Though I trust the Universe to provide the most ideal situation, I must admit I am a little concerned about the end of my great living situation on August 10.   Please let me know if you have any ideas, locations, or situations that you might think appropriate.    Blessings and hope.

Not yet

2010-07-06T04:55:00.001+05:30

Platelets today 1
someone sent me a link saying the John Hopkins news I posted last week was not true. I'll post the link later when I'm not in hospital getting transfusion.

the good news is that for such low platelets I didn't feel so terrible. No spontaneous bruising. It's important to remember that it took the other survivors about a year to stabilize. I've only been on my program for about a month.

It's also good to know Marla stopped transfusions when she was at 8 plts and Bruce is still alive transfusion free 8 years later w plts between 10-15. I have inspiring emails from both that I will post soon.

In the end it is only numbers.

Don't get me wrong...I'm a little sad also. I had hoped that they might bottom out at 3 or 4. The challenge is to see reality and to stay positive. In the meantime the tv tempts me with fried foods on the cooking channel, cakes, even a wendys frosty is looking kinda delicious.

Please sign up for shifts. I am not afraid to admit that I need your help right now. Let's pray a perfect place to live will emerge before august 10

Anyone?

2010-07-04T01:38:00.010+05:30

Anyone got the PC Microsoft Professional Office 2003 edition? Someone accidentally wiped mine out and now I need the disks to reinstall so that I can get to my 2009 tax info, etc, etc.

Also, I have now developed what is called a Fissure Hemmoroid (think Grand Canyon taking a right out of your butthole--sorry it's definitely not charming anyway you put it). I've done internet research, ordered product at 3am in the morning (perhaps not the best decision in retrospect) and am now asking the general public for suggestions of things that worked for you, your family, your dog, your best friend, whomever. I promise I won't tell anyone of your situation. I need answers because so far this pain beats all. If you haven't read what I've already tried, I refer you to my earlier post:

http://yogadifferent.blogspot.com/2010/05/important-lessons-learned-over-past.html

Please let me know: fieldofcosmos@gmail.com

Waking up Determined

2010-07-02T17:36:00.000+05:30

With each new outcropping of weird bodily pain, I am all the more determined to overcome these challenges.   It seems like one strange infection disappears only to be replaced by another and I end up spending my days managing the new and the old symptoms.   My butt situation has become excruiticating.    One big pain in the butt!   (The irony that I too can be one big pain in the butt for those of you kind enough to come help me is not at all overlooked!).    Thank you for your patience.

Yet as I wake up and look out my window (until August 10th that is) at the pinon forest--which is absolutely delighted this morning with the rain---and I hear the birds singing their hearts out, I am so thankful for still being here.    I find myself thinking only one thing:   I want to live. Then I take a grateful deep breathe and realize: I am living right now.    And it's good in spite of my body issues and complaints.

My doctor appointment is next week and through prayer and determination, I hope to have these symptoms under control and me looking good.   After all, I have a new hairdo.

Johnny at the ChopShop

2010-07-02T17:24:00.000+05:30

Next to the Cowgirl Hall of Fame is Johnny's eccentric and fun Chop Shop (and no it's not named after the independant film of the same name). His adorable and sweet mini-boxer greets you at the door with a smaile. In the 45 minutes, I was there a myriad of people stopped by. People from the street stuck their heads in to comment on the dog. People from the bar stopped in just to say hi. A seven year old girl, whose dad works as a bouncer at the door to the Cowgirl, hung out with us. It's social central.

And Johnny gives a great cut. Fun, hip and bless his heart on him (for me anyway). I've been seeing him for years---the man has talent. Check out him out http://www.chopshopsantafe.com/

Oh, the fun

2010-07-02T00:24:00.000+05:30

My butt hurts.   I'm pretty certain it's a result of the five days of antibiotics I just took. It started about day 2 or 3 of the course.    It's not a pretty picture down there....piles and flaming, red, itchy, swollen inner butt cheeks.    So please excuse me if I don't sit upright!   I'm currently sitting on a piece of firm tofu which according to an acupuncturist friend absorbs heat from rashes (or at least this is what I understood).   I'll let you know if it works.

There is good news.   On Monday 6/26/10, my platelet count was 46.   Today, Thursday, it is 23.   It's not a bad drop.   Also it would appear that my red blood cells held pretty well!    It was so nice to get some decent blood news....don't get me wrong, all the numbers are still down, but not at such a fast rate and that seems like huge blessing.  Perhaps I'm finally doing something right!

Even better than that is that we found out that the Tricore lab is open on Saturdays from 7-11am....which means that I can go there for tests on Saturday rather than braving the hospital, which is by far my least favorite place on the planet at the moment.   The incompetency that I experienced there last Sunday was both mind-boggling and infuriating.   I know I'm not supposed to get upset at their straight up ineptness, but it will suffice to say that they were supposed to have platelets ready for me at 9am and after three trips there, multiple phone calls, spending an inordinate amount of time at Registration TWICE, the platelets finally arrived at 4pm.   Unbelievable.

And, after weeks of trying, I finally got to see an excellent professional lymph massage therapist.    My swollen lymph node under my right armpit, which has been going on for about a month now, actually feels better after working with her.   It gives me hope that I might not have to live with this unwelcome pain forever.

Small victories bring me hope.

Featured Healer: Maury Brooks

2010-06-30T05:34:00.002+05:30

I have been blessed to have been offered several different kinds of healing sessions over the past month.   Some of you that have offered, I have yet to contact (but I will).      In combination with all of my doctor appointments, the first week or two I was so excited to try all of the different modalities offered by different practioners that I wore myself out.   So now my goal is to have no more than one treatment session per day.   There is such a thing as "too much of a good thing."

As thank you to the wonderful people who have volunteered their amazing services, I will feature each person along with their contact information in case any of you paying customers out there are interested.

Maury Brooks, qigong energy healer and movement instructor, emphasizes that the movement of energy does not require touch....or even proximity.    That said, he kindly came over last night to offer me a treatment.   He placed three purple ballons in various locations on my body, held by the weight of a blanket.   Then he incorporated deep breathing, sound (which he played from his laptop) and energy work.    The ballons amplify the vibration of the sound.   My only job was to lay still and breathe.

At one point during the session he asks me "do you taste that?" as he stopped to get a drink of water.   While I had recently finished one of my delicious bitter lettuce juices (please sense the sarcasm here) so the taste in my mouth wasn't exactly pleasant to begin with, I did get what he was saying.   There was a slight metallic taste in the back of my mouth.   How'd he know? Hmmm. Seems like magic to me.

Maury generously donated this two hour session to me.   I definitely felt more energized after the session.   If you are interested in contacting him for more information, check out his webpage http://www.qigong-healing.com/ or call him at 988.8951

Infomercial over.

John Hopkins Update

2010-06-29T08:10:00.001+05:30

AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY ('TRY', BEING THE KEY WORD) TO ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY.

Cancer Update from Johns Hopkins:

1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.

2. Cancer cells occur between 6 to more than 10 times in a person's lifetime.

3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.

4. When a person has cancer it indicates the person has nutritional deficiencies. These could be due to genetic,but also to environmental, food and lifestyle factors.

5. To overcome the multiple nutritional deficiencies, changing diet to eat more adequately and healthy, 4-5 times/day and by including supplements will strengthen the immune system.

6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastrointestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.

7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.

8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of
chemotherapy and radiation do not result in more tumor destruction.

9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either
compromised or destroyed, hence the person can succumb to various kinds of infections and complications.

10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.

11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply.

*CANCER CELLS FEED ON:

a. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color Better alternative is Bragg's aminos or sea salt.

b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk cancer cells are being starved.

c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little other meat, like chicken. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.

d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including be an sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C)..

e. Avoid coffee, tea, and chocolate, which have high caffeine Green tea is a better alternative e and has cancer fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.

12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines becomes putrefied and leads to more toxic buildup.

13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells.

14. Some supplements build up the immune system (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the bodies own killer cells to destroy cancer cells.. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells.

15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.

16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to
get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer
cells.

1. No plastic containers in micro.
2. No water bottles in freezer.
3. No plastic wrap in microwave..

Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr Edward Fujimoto, Wellness Program Manager at Castle Hospital , was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food. You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper The dioxin problem is one of the reasons.

Please share this with your whole email list.........................

Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead.

The Challenge of Asking

2010-06-28T19:05:00.001+05:30

I did not ask for this disease or this situation.

I did ask the Universe for the opportunity to repair certain relationships in my life.

The Universe is a fickle friend, I suppose.  I got both things I asked and didn't ask for.

I have on my hands a literal fight for my life.
The astrologers say the verdict is out, whether I'll make it or not.
I'm personally determined to live.

While I conserve my energy for endless doctor appointments and self healing, I am forced into a position where I have to ask.    This is a new place for me.   I have always been fiercely independant and self-reliant.

Now I have to ask for help with nearly every activity that I once took for granted.
It is not an easy place for me to be, but I suppose it too is a good lesson.

From the bottom of my heart, I want to thank you all for your ongoing love and support.   I want to thank you for not minding me asking for help.   I want to thank you for everything.

The Search For Housing Begins....my place expires August 10

2010-06-27T04:51:00.010+05:30

My donated housing situation, as many of you know, has been a blessing beyond belief.   Lauren Hunt and her husband Brad have been absolutely fantastic and any ideas on how to thank them profusely and profoundly would be appreciated.

That said, I have to move out of this lovely refuge by August 10 at the latest.   Perhaps the weekend before makes more sense logistically for anyone willing to help me move?

What this means:   I need a new non-toxic place to live by August 10.   Ideally, the place would be similar to this one: quiet, clean, centrally located, washer/dryer, dishwashter, warm in the winter, bathtub, etc. etc.   Even more ideal would be a low or no rent situation, since I have no income at this time or in the foreseeable future.   All things, of course, are negotiable.

So, please, keep your eyes, ears and hearts open and let me know if you hear of anything or have any ideas.   Thank you and blessings.    You can email me directly at fieldofcosmos@gmail.com

COMPUTER ISSUES (again!)
Someone in their efforts to help me "clean up" my computer discarded (as far as I can tell) my Microsoft Office suite 2003 including my word and excel programs.   Somewhere in the depths of my storage unit that only my Aunt Judy understands are the disks to upload the program.   Judy is on vacation until mid-July. This is extremely unfortunate as I was just about to sit down and finalize my 2009 tax stuff for my accountant (running a bit late here) AND I was going to enter all of my bloodwork into a spreadsheet so that I might be able to really track the ups (hurrah!) and downs (dang em!) of my blood counts.    If you have skills in computers or those Microsoft Office files or at the very least data entry skills (ie of bloodwork), and would be willing to help out, please let me know asap.   fieldofcosmos@gmail.com

PS. The magnetic mattress is 2 outta 3 so far.   For a person who has not slept the whole night through since April, 2 nights of uninterrupted sleep has been a huge blessing.   The night that I didn't sleep well? I had, um, uncomfortable body issues of the GI nature combined with the full moon.   Will see what happens tonight.....

Blood Update & the Magical Mattress Pad

2010-06-25T21:02:00.002+05:30

Wednesday (after both blood and platelet transfusion on Tuesday):
platelets 43 wbc 1.2 rbc 3.77

Friday
platelets 23 wbc 1.3 rbc 3.85!!!! (this is great! rbc & wbc on the rise!)

What this means:   Platelet transfusion on Sunday.

I still have my "good" days and my "bad" days.   Today I'm a bit better.   Wednesday after the transfusions was a bit rough.

In the meantime, I've purchased a very fancy smancy magnetic mattress.   It's amazing the things you learn from people. I've heard about several miraculous results. So why not?  From their website:

Why do you need magnetism?
Science has established beyond all doubt that all living cells are electromagnetic by nature. There are only two natural sources of magnetism available to you: your brain and the Earth. Eighty percent of the human brain is composed of Astrocyte cells. These cells have the capacity to generate electricity and produce a pulsed, electro-magnetic field with efficiency. The Earth is your other source of magnetism. It provides a supportive, steady state, magnetic field, which your body draws on to enhance molecular reactions. These two magnetic fields work together to accomplish magnetic resonance, which dramatically enhances the chemical reactions of the body. 4

Magnetic Resonance
Magnetic resonance occurs when the brain’s pulsed magnetic frequency matches the frequencies of various tissues and organs. 4 This is accomplished in 90-100 minute cycles, mostly while we sleep. Resonance will usually maintain a given frequency for a few seconds up to a few minutes. This range depends on the urgency and degree of repair or restoration needed. Magnetic resonance is desirable because it helps repair damage done to cells, makes enzymes, and enhances immunity. 4,5

Why do we need to augment naturally occurring magnetism?
There are two major factors adversely affecting magnetic resonance. First, a gradual cyclic decline in our geomagnetic field has left the atoms of our bodies in a lower energy state, making it more difficult for magnetic resonance to occur. 6 It is estimated that we have lost 80% of our magnetic field in the last 4000 years. 7,8,9,10

Second, in this technological age, the outside electromagnetic frequencies your body is exposed to are higher and stronger than ever before. As a result, these frequencies override the vital brain function of magnetic resonance with your organs and tissues. 11 This interference leaves you in a fatigued state that, over an extended period, can contribute to the development of chronic ailments. This development is due, in part, to a lack of restorative resonance. 11

How can you restore the magnetic field your body needs?
These deficiency states can be overcome by exposing your body to an enhanced steady state, magnetic field (much like the Earth’s) during sleep. In North America, the magnetic field must be pure negative and completely pass through the body in order to complement the negative field of the Northern Hemisphere. 11 By using our patented Magnetico Sleep Pad, you ensure your body will receive the right direction of magnetic energy, which is essential for organ and tissue restoration.

Study Validates Increased Detoxification

A clinical pilot study of thirteen subjects was conducted by an independent private physician. The study supports the increased detoxification capability associated with the Magnetico Sleep Pad, Super Model (20 gauss). This involved three urine challenge tests, all analyzed by an independent lab.

1.Baseline levels, taken three days before any treatment.
2.After one night on the Magnetico Sleep Pad.
3.After the second night on the Magnetico Sleep Pad plus taking one 500 mg DMSA capsule.

Results:
Excretion levels of toxic metals after one night on the Magnetico Sleep Pad compared to Baseline Levels:

Weighted Averages: Arsenic -31.66%
Lead -22.18%
Mercury -28%
Nickel -6.6%
Tin -10.44%

Excretion levels of toxic metals after a second night on a Magnetico Sleep Pad and 500 mg of DMSA taken at bedtime, compared to Baseline Levels:

Weighted Averages: Arsenic -16.7%
Lead -80.58%
Mercury -45.6%
Nickel -4.15%
Tin -57.72%

Think about it, what a simple way to assist in good health.... It’s as easy as going to bed! Sleep is all about restoring, repairing, rebuilding, healing and in children-growing. Those magnets just keep going and going, helping you on your way to health every single night! Your satisfaction is guaranteed.

Another email from Marla

2010-06-22T05:28:00.000+05:30

Hello Karen:

I haven't had my CBC taken in over 2 years now. But prior to stopping my CBCs all my numbers, I think, are documented on my website. During that time, I also did two full years of phlebotomy to get my iron overload down to normal. During those two years of full phlebotomies, my hgb remained in the normal ranges (even as high as 15s at one point). As far as I know my counts are normal, except my plts never went higher than 118K, but remained steady there for years.

I no longer juice, except if I get sick or something, which isn't often. My diet is a lot different now than during recovery. But still mostly organic and still not much junk food. I say that because I do on occasion have some dessert of cookies or a pic of cake or muffin. I think I'm more of an herbal tea drinker now, than a juice drinker. . .

As far as juicing regime, I would probably make changes. I think the list you got was already modified from during my recovery phase. I see what you listed was in Jan 2002 and my last blood transfusion was in 2001. So this was definitely a phase where I was modifying my regime. I "don't" recommend one cup of orange juice daily and didn't do that in the beginning as well. I think that came about as I was learning about vit C from Dr. Rath. I since come to believe that it may be too much to have 1 full cup of orange juice every single day. If you look at the May 2002 example menu, you'll see that I changed more and there is no orange juice there. The other juices I drank during recovery were a combo of carrot, romaine and celery or cucumber, sometimes with half an apple. I did not juice beets regularly. Again, that must have been what I was doing during that phase of my tweeting my diet to try to tease out more results. You may also notice that I started to add meat back in by May and that's when I started to see more improvements especially with my reds. You may notice that by April 2003, I has stopped juicing and had added more meat products. To get a better understanding of why I decided upon the changes I did, you can check out the book list that I had read during that time.

I tried a lot of things especially in the beginning. so if you look at the page of my treatment, there is a section where I write about what I "eliminated." This might help you get an idea of what else I tried and what and why I stopped them. But to re-iterate, all my juices in the beginning consisted of carrot, romaine, celery or cucumber, and half an apple or so and barley green mixed in. I would basically put a measuring cup under the juicer and see that it filled at least the full cup. In the beginning I followed Dr.Lorraine Day's protocal of 8 glasses of juice a day and I even went beyond to about 13! But I later cut back to 4 a day, which I think I more practical (each drink being 2 cups worth--i.e. 2 cups 4xday). Looking back in retrospect, I can see how it's confusing. There was so much that I may have taken some info for granted! Especially the juice combo in the early phase. By the time I had started my website, I was pretty much transfusion free and just trying to document it for anyone interested. I did not list my counts while transfusion dependent because I didn't feel those mattered because the blood wasn't mine, but transfused blood.

Oh, and one last thing, the lemon water. . . I did do that for a couple years, but later became sensitive to lemons! So I don't recommend it every single day like I did it. My sensitivity came in "hives." I have since stopped it, and find that I can only take lemon water for about two weeks when the hives start to come back. So easy with the lemons. . .

Okay, I hope that's more clear! If not, let me know.

Take care!
Marla

numbers numbers numbers

2010-06-22T00:17:00.002+05:30

Last Platelet Transfusion was on Wednesday.
Platelet counts:
Thursday 59! Friday 32 Monday 10 :(

Thus I'll be getting a platelet transfusion tomorrow unless (dear god) they don't drop from 10. That would be great!   I'm actually feeling ok at 10.  I decided to forego the blood transfusion that was scheduled for today (today is day 16 since the last blood transfusion).   The red blood numbers aren't NORMAL by any account, BUT they seem to be holding ok.   The goal here is to become transfusion free and in the meantime to space them out as far as possible as long as I feel ok.   I'm not interested in crashing and burning.   I am interested in encouragning the body to make it's own darn stuff and to stop relying on other people's blood.

RBC (red blood cell count):   Friday 3.09   today 2.98  NORMAL 4.06-5.21
hemoglobin    fri 9.2    today 9.2 :)   NORMAL 12.5-16.6
hemocrit    fri 26   today 25.2     small loss   :)  NORMAL 37-49

WBC Friday 1.4 today 1.2 :(    NORMAL 4-10.6

I've only been on the juicing program for a few days now, but the reds are looking better.   A very kind person made me two kinds of bone broth soup over the weekend and I suspect this has also helped my blood numbers.

No more sad movies.   I managed again! to pick one out last night on a kid who died too young tear jerker.    Only movies that make me laugh for now on!   If you don't have any to contribute, please make recommendations and I'll see if I can get them on Netflix.

Another Email from Marla, AA survivor & Her Story

2010-06-21T03:03:00.001+05:30

Hello Karen:

I was transfusion dependent for 19 months. I got off the plt transfusions around 17 months. As far as how long it took me to see changes in my counts after changing my diet, I would say about a month or so after AA diagnosis, I was starting to learn to read the CBCs better, and that's when I noticed the first changes (improvements) were with the differentials of my white count. I had zip neutrophils early on, and while the total WBC remained low fro months, I could clearly see the differentials righting themselves even though I continued on to be transfusion dependent for months. At diagnosis my plt count was 1K. I noticed about a year later that my plts started to hold at around 4K, then a few months later 5K, then 8K. That is the point where I stopped taking plt transfusions. Then slowly month after month it started to continue to rise into the safer ranges. At around 19 months after diagnosis, my reds started to hoover in the 7 hbg, and that's where I stopped taking red transfusions. Then when I added meats back into my diet, the reds really jumped up quickly.

The similarities to me and Akshay is that both of us did not take the standard immunosuppressant therapies, and it took us about the same length of time to recover our counts. The differences is that he had issues with low calcium and fragile bones. I can't say exactly what his diet consisted of, as we never really discussed that too much. And I know he did take some homeopathy, which I did not. And I think he didn't start to juice until later in his recovery. I'm sure his parents would be happy to share more information with you regarding his treatment.
Other differences is that Akshay was diagnosed with some sort of hepatitis before he developed AA. I was not. His hep cause was unknown. Also I have had a life-long issue with skin problems for which I took medications and likely weakened my immune system and adrenals, etc. I don't think Akshay had that problem. Plus I am much older than he is. I think he's about 12 now? or so, and I am now 45. I was 34 at diagnosis. My last transfusion was in 2001 July 6.

Okay, hope that helps answer your questions! Thanks for sharing more info about yourself. I hope you keep in touch and if there is any more info that I can help you with, feel free to ask! I think my story on my webpage gives more details of what I went through, including the heavy female bleeding. (again, something Akshay didn't have to deal with).

All the best! Take care!
Marla

Marla's Story from her website:

How my aplastic anemia (AA) began or when it began remains unknown. However, it made its presence known to me in October of 1999. My very first symptoms appeared before I knew I was in trouble. It happened on a Monday while I was putting a file away at work. I sliced my finger on a file and put a bandage on the finger. But, I noticed about an hour or so later that the bandage on my finger was pretty drenched with blood. I thought that was odd because I had cuts like that before and never bled that much. I even made a joke about it saying that my finger looked like it was going to explode so, "stand back!" That same day, I developed a bruise on my left leg. By Wednesday, I woke up with these little red spots all over my legs, hands, and feet. (Which I later learned were petechia marks--bleeding under the skin.) I also noticed more bruising which looked unusual. Thursday night, I noticed unusual gum bleeding after I brushed my teeth. On Friday morning, the gum bleeding was more intense. While I was driving to work, I tasted a saltiness in my mouth. I looked in my rear view mirror at my teeth only to shock myself with all the blood I saw in my mouth. Still, it was payday and Friday, so on I continued and worked the full day. The next morning was Saturday. I woke up to yet another surprise of about 10 bruises on my legs, more bruises on my feet, arms, and hands. Alarmed, I woke my husband up to tell him to look at me, and he said as we were speaking, "You're getting another one on your hand." Bruises were developing on my body right before our eyes. Okay, now I was freaked out.

I ended up in ER that day. A blood test had shown that my platelets were at 1,000. Normal platelet levels are between 150,000-400,000. Someone had stolen mine!! I was admitted to the hospital (thinking that they could help me find my platelets), and the next day I had a bone marrow biopsy and aspiration. ("Wowsy". . .That's about all you probably want to hear about that.) I stayed in the hospital for a week, and during that time, I had steroids, my first platelet transfusion, a diagnosis of a prolapsed mitral valve (heart valve problem) and aplastic anemia. Now things were starting to overwhelm me, and I wouldn't consent to any specific treatment, so I was told to go home and come in to the doctor's office in a couple days.

A complete blood count (CBC) taken at the doctor's office indicated that my blood levels were continuing to drop. Before the week ended, I was back in ER with an infection in my gums and on my right arm where the IV site was of my second platelet transfusion. This time, my hemoglobin was 5.0 (normal range for a woman is 12-16), white count was .5 (normal range is 4-11), ANC of 0, and platelets, after a transfusion, was 5,000. Once again I was admitted to the hospital. During this stay, I got the pleasure of receiving IV antibiotics, my first red blood cell transfusion with chills, more platelet transfusions with hives, hormones to try to stop my menstrual cycle which had already begun, a not so lovely PICC line, and was told that I was already refractory (not responding) to platelets. I went home from this stay with Provera (hormone to prevent menstrual cycle) and a prescription for a three months supply of Ciproflaxin aka Cipro (antibiotic).

I still did not want conventional medical treatment for my AA, so for about three months, I had supportive care wherein I accepted red blood and platelet transfusions via my PICC line. I was getting platelet transfusions almost every other day, and red cell transfusions almost every week. But, alas, my PICC line site became infected and had to be removed. I found myself once again looking out the window of a hospital room while I laid on the hospital bed with more IV antibiotics pumping through my veins, and my arm where a PICC line once resided, wrapped in a heating pad. I was running a fever that reached 106 degrees because of the infection in my arm. I had develop cellulitis on that arm which made my arm twice its normal size and very painful. My arm had developed a huge rash, was peeling, hot to the touch, hard, and inflamed. I was released from the hospital after a week and sent home with IV antibiotics which was to be administered to me for another week with a home health service. After a week of the home IV antibiotic, I was to take another week of oral antibiotic, Doxycycline.

I continued for another five months with weekly transfusions of both platelets and red cells until my menstrual cycle got the fine idea of trying to allow my body to drain it's blood supply via my uterus. So, I ended up in ER and was admitted to the hospital again where I stayed a few days to get my menstrual cycle under control and my body tanked up with more blood so I would resemble a live person. This time, I was sent home with birth control pills, Demulin, to control my female cycle. I was not to take the placebos so that I wouldn't have a cycle at all. Well, things didn't work out as planned. I started my menstrual cycle again anyway, but this time it was even heavier than before and lasted for about a month! Of course my transfusion rate increased at this time because the blood was being pumped into my veins while at the same time just dropping out through my period. (I guess my exit door had been left wide open.) After going through this nonsense for about a month, I had a transfusion on a Friday, and by Monday, I had to be taken to the hospital by ambulance. My hemoglobin level had dropped down to 3.7. (I know others have been able to walk into the hospital with this level, but I guess with all this fast yo-yoing of blood in-blood out business, I could not get up without starting to black out. I just wanted to be left alone to die by then, but my family wouldn't have it.) At this point, I didn't care anymore. I was so tired. I accepted to have an endometrial ablation done to stop the bleeding and had more transfusions, but that was all. The endometrial ablation was done, I got tanked up again with blood, and I was sent home again to continue my exciting life of regular visits to the doctor for CBC's and visits to the Procedure Center for transfusions.

Eleven months later on July 6, 2001, after using 89 units of platelets and 86 units of red cells, I received my last transfusion. (Although I didn't know it at the time.) After a total of 19 months, my hemoglobin started to hover in the 7's, and my platelets remained above 10K. I was very functional and asymptomatic at this level, so my poor little veins finally got the long needed rest it deserved. Finally! Progress!

She continues with CBC (blood counts) and the ups and downs she went through. However, as of now, she hasn't had a transfusion in over 8 years. She is, in my humble opinion, a brave and remarkable woman.

Some of you have requested My Story. It's coming.

A Plea for More Entertainment

2010-06-19T20:11:00.001+05:30

My sleek BMW of juicers unfortunately seems to share some of the characteristics I've often heard about BMW.....hard to maintain.   Darn it.  Somewhat difficult to clean. And, just for the record, the juicer that is supposed to juice all things, the Green Star 5000, doesn't like blueberries.    Nope.   Don't do it.   No blueberries. I guess I'll have to use the blender for the blueberries in the future.   Very sad.

Platelets on Thursday was actually 59! which is quite a boost from the transfustion I had on Wednesday.
Platelets on Friday was 32.   Quite a drop.   Darn it.   I'm wondering if the movie that I watched that made me cry contributed to the drop.   Lately, I've had a knack for picking out movies on hulu.com that involve some terrible the-person-is-to-young-to-die death disease.   Strange.

So. This is a call for your favorite, uplifting, non-violent, non-depressing DVD and/or book.    I don't need too many, but I would love to borrow a few to keep me entertained at night.

An Email from A Breast Cancer Survivor

2010-06-18T17:11:00.002+05:30

Just What You Need.....more advice

Hi Karen

I have been following your blog and your incredible journey. I have been silent in my advice because the only thing I can advise is to do what your higher self tells you is right and good and correct.

But, I do have something to share. You may or may not remember that I am a breast cancer survivor. It was also quite a journey, although in no way as intense as yours.

I learned lots. This is what I want to share, (but you probably already know !!!), Much of the friendly( as in friends, not as in medical or alternative knowledge) advice you will get ( to do or not to do. to medicate or not to medicate. etc) comes from good intent, but is often based in someone's own dark and personal fear. Their fear for you...their fear for themselves. In my case, I had to stop sharing and talking with some friends...and they were and are my friends...because I just could not take on their fear. I had enough of my own personal fear thank you very much ...I did not want and could not carry theirs. True Yogis are strong. Not everyone is. Sometimes good intent coming from fear just gums up the works if you know what I mean. I found myself reassuring people that I was OK so they would be OK. It was exhausting and not doing me any good. I don't know if this is happening to you....but if you find this is where things are going with someone....just take care not to absorb their fear. I hope you don't think I am nuts...well, maybe I am...but this was just my experience and perhaps somewhere it may be helpful for you. One example which happened to me...and won't happen to you.....I called a friend who I knew for many years here in Santa Fe when I was first diagnosed because I thought she would be a good emotional support. When I told her my circumstance, she said " I am so upset and freaked out I can't talk to you right now. I can't handle this. I will call you back and we will discuss what is happening". I NEVER heard from her again. Can you believe it????? I finally ran into 5 years later and she asked how I was........really !!!!!

So my friend, take strength from those who can give it, reject fear when it comes knocking on your door, and know that many love you right along side of God. Who knows what any of this means....but if you find out.....I"ll be first on your list to listen.

I send you my love and my positive energy.
X X X
A friend

Clarification

2010-06-18T03:20:00.000+05:30

I have gotten a few messages from some of you saying something along the lines of "we hear you are not going to do the bone marrow transplant."

Let me clear.   I never said that.

However, the very first doctor that I encountered at St. Vincent's Hospital the first night I was in ER said it bluntly "You should do everything you can to avoid a bone marrow transplant."

Some of you have strong opinions on what you think I should do--in one direction or another.   While I really appreciate your concern for my well-being, I am in a process of carefully researched exploration.

No options have been eliminated at this time.

My reality is this:

Yesterday I had a Platelet Transfusion, which was 6 days from the previous transfusion. The last transfusion was only 5 days apart. This is one day progress.   Today my platelets were 51.

My WBC went up from yesterday.

I have not had a blood transfusion for 12 days.   The last transfusion was only 7 days apart although previously they were averaging about 10 days apart.    While my hemocrit is lower than it was yesterday, I hope that I might be able to wait another 3-4 days at least for another blood transfusion.   This too shows progress.

Yesterday's blog featured Marla Brown's recommendations.   My BMW of juicers (the Green Star 5000) arrived today.    I sent Marla an email this morning asking various questions and this is what she wrote back (though she didn't answer all of my questions, I hope that she will).

Dear Karen

Very briefly, I am currently doing well and transfusion-free. While I do continue to eat as much organic foods as possible, I am not as strict as I used to be. That is, I do go out and eat at restaurants again, but still no junk foods or snacks such as sodas or processed, prepackaged foods. I did start out vegan in the beginning, but I currently don't recommend a strictly vegan diet anymore because I do believe that people with blood disorders need some animal products especially since true B12 only comes from animal sources and the body does need some saturated fats, etc. I would currently recommend avoiding sweets such as fruits in the AMs, and eat those after lunchtime as too much sugar in the AMs is stressful to the adrenal glands.

I would say that it's a rare person who would forego conventional medical treatment like I did. My first inspiration was from Roger Fortin, who has since passed away due to a heart condition. He did make a full recovery and lived well for about 5 years after he recovered. I did write a small thing about him on my website. The other person who tried to go it naturally was John Hess, but he had MDS, not AA, AND he did some things that I would not recommend such as competing in running competitions. So that would leave only one person I know of who has foregone the conventional IST, and his name is Akshay. He is a young boy whose parents oversaw his treatment. He recovered and took about the same amount of time I did. Our cases have similarities and differences, but that will take more time to discuss. I do know of a couple other people who are trying to go natural, but only after they have already taken the standard treatments which did not help them. So far they are still taking transfusions.

Take care!
Marla

Here is another letter than I received from someone who went through the ATG treatment twice:

Hi Karen, well my counts were really low too - I had less then 10 on the platelet count, and my white cells were below 0.5, reds were around 8 or 9 I think. My first round of ATG didn't seem to do much so after 4 or 5 months we tried a second round. There was eventually some improvement around a year after diagnosis but I had a year and a half of transfusions in the meantime. I've followed Bruce's story too but not sure about the alternative treatments, I did try chinese herbs for a while but gave up mostly due to the disgusting taste !

Andrew
(Still alive after treatment 10 years ago.   He got AA when he was 38).

Emails from Other AA Patients For Your Consideration

2010-06-16T06:34:00.000+05:30

My primary acupuncturist and I are seriously considering the following information:

Dear Mr. and Mrs. Strasberg,

I am sorry your son has been sick, but I am glad that he is feeling better. It is good if he is not getting blood transfusions. I am not taking homeopathy. I am happy if it is working for him. It is very good that your son's food has changed to the Macrobiotics. Macrobiotics is a good change, there is much more you can do to make his diet better. I am happy to tell you about it.

Doctors diagnosed me with aplastic anemia October 1999. My body was not making blood for itself. I had to take many, many blood transfusions. A bone marrow test showed that there was not much bone marrow in my bones. Doctors told me that if I did not take their drugs, I would live only from 3 to 6 months. They offered ATG, ALG, cyclosporine, prednisone, and neupogen. I did not take the drugs the doctors wanted to give me. Since I was a child, I had been taking shots and medicine for my skin allergies. Maybe drugs helped me get sick. I had to think for my self and make my own informed choice. My husband helped me. Any good doctor should tell us that drugs are poisonous. Drugs can help, but they can also hurt. I took natural Chinese Medicine for a few months, but I do think it helped me.

After doing a lot of research, I have accepted a natural plan. We have bought a lot of books. Over the many months I have worked on making my plan better and throwing away what is not working. I am getting better and have not had a blood transfusion for 17 weeks. (4 months now)

Here is my plan that is working for me. I eat no eggs, no fish, no poultry, no meat, no cheese, no milk, and no food from animals. I drink the juice of one lemon in water first in the morning. Lemon is a powerful cleaner for the body. Wait a while. I drink 1 cup fresh orange juice. Wait about 1/2 hour then eat only fresh fruit for breakfast. Mid morning I drink 2 cups fresh carrot juice with a tablespoon of ground flaxseed and a tablespoon of dried barley grass powder. For lunch, I may eat some brown rice, some black beans or lentils, and a big fresh raw salad. Use a green leafy letuce such as romaine lettuce and finely cut cabbage and some raw root vegetables chopped up. A little sea salt, ground sesame seeds, raw apple cider vinegar, extra virgin olive oil, honey or herbs for flavor on the salad. Sometimes I steam some vegetables too. If he can tolerate sprouts, that is very nutritious too. An hour after lunch I drink one cup of fresh romaine lettuce juice and one cup of carrot juice and one tablespoon dried barley grass powder. One hour before dinner I drink one cup fresh cucumber juice (helps circulation), one cup fresh carrot juice, and one tablespoon dried barley grass powder. Dinner is very much like lunch. Eat big raw fresh salads with a baked potato. Sometimes I eat black beans and onions too. Add some fresh raw root vegetables such as radish or carrot. Buy no salad dressings in a bottle. Make your own. One hour after dinner I drink 1 cup carrot juice, and one cup beet juice with one tablespoon dried barley juice powder. Before bed I drink one fresh squeezed lemon in a cup of water. You will find that the longer you are on this diet, you will find more and more vegetables and fruits that you can eat. Try to buy vegetables without chemical fertilizers or pesticides. I have also used some macrobiotic recipes which I find is good for me.

Other important parts of the plan are as follows. Drink at least 8 cups of water through the day. Don't let cleaning chemicals touch his skin. Don't use shampoos for cleaning the hair. Shampoos contain detergents that can soak right into the skin down to the bones. Use natural soap instead. Read the Bible each day and pray to God. Don't just say nice prayers, if you have any problems with God and the way He is working with you or the way He is working with the world, then let Him know it in prayer. Always be thankful to God. Learn thankfulness. Sunlight on the skin and bright daylight coming into our eyes is important for many reasons, but for me, too much sunlight can lower my blood levels. So I have to be careful. Fresh air is very important. I sleep with the window open every night. Walking is also important exercise. Making the body sweat out poisons with a hot shower is good. But, be careful for a person with low blood levels. Too much heat may make us weak.

Try to stay away from electrical transformers and electrical wires. Electrical fields hurt the bone marrow. Do not use microwave ovens or cellular phones. Keep away from electrical appliances especially while sleeping. Your alarm clock or radio should be far away from your bed while you sleep. If you can, make a copper wire go from the ground to your body while you sleep to protect you from electrical currents and fields while you sleep.

Sleeping at the right times is very important for healing the body. Stay away from stress and anger. Anger hurts your immune system and bone marrow. Do not eat or drink anything artificial. No white or brown sugar (a little raw honey is alright), no white bread, no white sweet breads, no white rice, no coffee, no tobacco, no tea (some herbal teas like peppermint tea is Ok), no colas, especially no coca cola.

I take only one vitamin--B12 from vegetables not from meat. And I take Barleygreen dried grass powder. Take no other vitamins. Raw food is the best source of vitamins and vitamins made in a factory can be bad for the body.

My sickness perhaps has been worse than Gabriel's sickness. I believe that Gabriel can be helped from the method I am using. Maybe you do not have enough time to do everything I do. I have had 89 platelet transfusions and 86 red blood transfusions. Without drugs, I have improved so that I have not had a transfusion for 17 weeks. Thank God. Drugs may seem to help at first, but they will cause other diseases. Drugs are very hard on the liver and kidneys. I think your choice not to take drugs is a good choice especially since Gabriel's liver is already having trouble. Have patience and do as much the natural way as you can. The more powerful natural things you do, the faster you will get well. Listen to your body.

Try to eat at least 75% raw fruits and vegetables. If you cannot drink as much fresh juice as I do, try to drink at least 4 cups fresh carrot juice each day. Carrot juice is powerful medicine.

We are very sick people and need to be very careful to get well and stay well. This take time and much patience. I hope this helps you.

Marla Brown

----- Original Message -----

DEAR MARLA:

I WRITE YOU BY SUGGEST MARY HUBBEL. SHE SAID ME ABOUT OUR "SAME" TREATMENT.-

MY SON GABRIEL STRASBERG, 20 YEARS AGE, HAS APLASTIC ANEMIA POST-HEPATITIS. HE WAS TREATED WITH ATG, CYCLOSPORINE, G-CSF AND OTHER DRUGS.-

HE IS ILL AROUND 12/12/00, AND HE WAS VERY BAD.-

WE SUSPECT THAT THE MD (OF BUENOS AIRES ) WAS WRONG IN THE TREATMENT BECAUSE THE TOXICITY OF THE MEDICINE THEY GAVE GABRIEL PRODUCE LAMINAR HAEMATOMA without spinal cord compression AND "PARAPARESIA" ( HE CAN`T MOVE LEGS, CAN`T URINATE, AND THEY PUT A CATHETER INTO HIS PENIS AROUND THREE WEEKS).-

WHEN GABRIEL WAS FINE AND HE CAN TRAVELL WE WENT TO VISIT NEAL YOUNG OF THE NIH (BETHESDA-MARYLAND) AND HE SAID WE COULD TAKE THE RABITT TREATMENT WITH 50% PROBABILITY SUCCESFUL.-

IN THE MEANTIME WE BEGIN AN HOMEOPHATIC TREATMENT, AND WE NOT TAKE THE TREATMENT SUGGESTED BECAUSE WE KNEW IT WAS VERY HARD AND WITH LOW PROBABILITY.-

COME BACK HOME ON SEPTEMBER 2001, AFTER THE CRAZY ATTEMPT OF BEN LADEN (WE STOOD IN BETHESDA FIVE DAYS WITHOUT AIRPLAINS 09/11 TO 09/16) THE HOMEOPATIC MD GAVE GABRIEL MACROBIOTIC FOOD, AND THEN WE LEAVES THE ALOPATIC MEDICINE.-

AT LAST, TODAY, THE BLOOD COUNT IS THE SAME WHEN HE IS BAD, BUT A MIRACLE IS GOING ON. HE IS WORKING 4/5 HOURS WITH ME, HE WALKS VERY GOOD, HE HAS A GOOD CLINICAL LEVEL, AND HE IS LESS TIRED THAN BEFORE THE TREATMENT.-

WE WISH TALK ABOUT HOMEOPATIC TREATMENT WITH YOU, IF YOU AGREE.-

AT LAST, BUT NOT THE LEAST, I REQUEST YOUT PARDON BECAUSE I UNDERSTAND ENGLISH BETTER THAN I WRITE IT. PERHAPS YOU DONT UNDERSTAND SOME WORDS OR SENTENCE. IN THE EVENT OF THAT, PLEASE SAID ME.-

IF YOU WANT EMAIL WHIT US ABOUT OUR "SUFFERS" PLEASE ANSWER OUR "LETTER" AS SOON AS POSIBLE.-

DANIEL Y ESTER STRASBERG

Both Marla and Gabriel are still alive today. Daniel sent me this email and I am in the process of emailing Marla for more information.

Bone Marrow Donor Status Update

2010-06-15T19:06:00.001+05:30

Greg Higgins sent a letter to my Dr. here in Santa Fe about the potential marrow donor. What he said to Caitlyn over the phone is that it is a 10/10 match on paper, but that they need to make sure there is a live person behind the paperwork. I'm assuming this must be the case since they they also have another person who might be a good match too. Now, all the preliminary work-up if this person continues to be suitable will take at least 3 weeks and probably another 2 as well. It is up to my doctor here if she wants me (which she does) to do the immuno-suppressing stuff before (and there is still the ATG issue).

New News

2010-06-14T21:30:00.001+05:30

Platelets on Friday after transfusion: 60
Platelets on Monday morning:   27

They found a 10/10 donor. But before you all cheer, check these charts out here:
http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/Aplastic_Anemia/AA_Tx_Outcomes/index.html

They (ie Seattle) also want me to try the ATG first before BMT.

I feel like I haven't had enough time with alternative methods yet.   My doctor is going on vacation for two weeks and she said we could talk about it some more when she returns.   She is, predictably, suggesting the allopathic route.

Blood Donation is OUT.   They will charge you  $375 up front to donate blood directly to me.   Apparently the blood bank didn't have it together the last time that you all rushed to donate to me and because I ended up leaving town before I actually got any of your blood, the hospital ate the fees.

You Don't Have To Like It....

2010-06-12T20:08:00.002+05:30

You don't have to like it, but you have to accept it.

Somebody told me that the other day.   It struck a chord with me.   How often do I reject a thought, concept, even a person because I don't like it, because I refuse to accept it.

There is a part of me that whole-heartedly does not accept this illness and the implications of this illness.   There is a part of me that thinks my rejection of this illness is a healthy approach.   I got a letter from a lady who said she refused to capitalize chemo and cancer because it would add significance to the concepts.    I liked that.   I woke up this morning feeling from the depth of my soul "Enough already. It's time to get better."

But I can see it from the other side too....(round and round we go).....that perhaps I should accept this illness and all of it's implications and then surrender myself to the Universe.   I can see how the struggle is furtile because whatever happens is going to happen anyway.   Ultimately, it's all up to God.

Then I check into my heart....which is often heavy with grief these days....to see if there is even a glimmer of unconditional love.   Again and again, I have heard from friends "drop into Love" which sounds fabulous and yet somehow I'm not quite sure how to....when my heart feels so heavy and the tears roll off my eyes so easily.    I feel the love of the people surrounding me and I am so grateful for all of your support.   But to generate it from the inside....well, that's an entirely different story.

What helps me with my spin?   To accept that we are all part of the Divinity.   To feel (or even imagine) that Divinity pulsating through me with the breathe.    To seek that glimmer of hope and love and feed it more breathe and more life.   To surrender to the Divinity. To practice, again and again, until it feels natural.   And still, from the depth of my soul, to feel "enough already. illness begone."

Platelet Count.

2010-06-10T23:30:00.000+05:30

Yesterday: 33
Today: 17
Normal Range: 150-400.

Pray for a change in direction of platelets!

The Calendar: What it means and How to Do It

2010-06-10T23:27:00.002+05:30

Hello Friends,

At our meeting earlier this week we established an on line help calendar with several slots and roles for each day. The link to the calendar is at the top of the blog entitled Calendar Link and the roles are as follows:

AM: The morning person calls Karen the night before to see what her morning schedule is. She may have an appointment for you to drive her to, or need a grocery shop. laundry or some cleaning. She will let you know how she needs your help. The AM slot should cover from about 8 or 9:00 to about 12 or 1.

PM: The PM and AM persons should touch base at some time during the morning to establish where Karen will be for the AM to PM switch off. The PM person may have to pick Karen up somewhere and then either drop her off or bring her home.   The ideal PM slot should cover from about 12 or 1 to about 5pm.
Please note that AM & PM shifts will sometimes not have anything to do and sometimes there may be several drives and/or chores.    Karen's schedule often changes very quickly due to doctors appointments and her every changing transfusion schedule. (Wouldn't it be great if they were further apart?)

SUPPER: The supper person is responsible for contacting Karen at some point during the day and finding our what she would like for supper. You might be able to prepare something in advance, or depending on what she's got going on you might be able cook at her place. Washing up after supper is super helpful. This is not a night shift, it's just a supper call.

LEADERS: There should be two leaders each week, starting on Monday and ending on Sunday. The leaders are responsible for making sure that all the calendar slots are filled for the week. If there are slots that need to be filled, the leaders should make calls to fill them. The leaders are also the touch point people should any complications or last minute cancellations come up during the week. They are responsible for making calls to trouble shoot and/or find substitutes.

Sooo ... please visit the calendar link and sign up where you can. Please enter your name, the time you are available, and your phone number. You must double click on the line where you want to write. Sometimes it takes a few seconds. When you are finished, just close the page. It saves automatically.

If you are having any troubles or would like the CONTACT LIST of other helpers emailed to you, please contact me at ebudziak@aol.com.

Thank you for helping. Karen appreciates this beyond words!

Best to all,
Emily

With Each Breathe

2010-06-09T18:48:00.000+05:30

With Each Breathe
With Each Prayer
Accept

The birds sing outside my window. The clock ticks by my bedside.
And I realize just how precious time is.....

Healthcare Reform

2010-06-08T19:03:00.000+05:30

The journey is, and continues to be, challenging.    Yesterday I had another platelet transfusion.   Luckily this one involved just a few hives during the transfusion and a fever last night.

Once the allopathic doctors help to install in you the fear of death, it is hard to know what to do.   Technically, I am supposed to go to the hospital every time my temperature hits 102.    But when I went to the hospital for a few days last weekend because my temperature spiked at 104.6, I realized that it often takes me more days to recover from the hospital than it does from whatever else is going on.

Many people have suggested that I learn how to release judgement and anger.   This is clearly good advice for most of humanity and I am certainly working on it.   But somebody please tell me, how one does not get upset at the following scenario:

I go to the hosipital in the morning (last week) for a platelet transfusion.   Predictably I have the "what are you allergic to?" question part of the interview.   I give them the list of drugs.   I have a terrible reaction to the transfusion and say 4 hours later end up in ER filling out the EXACT same questionaire as I did 4 hours earlier.    Again, I list the medications.    They decide to admit me.   Say another 2 hours later, they try to hook me up to one of the drugs I'm allergic to!   Now it should be on my record, right? And I know for certain that it's on the form that I already had to fill out TWICE that day.   What would have happened if I weren't paying attention?

So I find myself upset at those events, amongst other experiences that our fine medical establishment subjects the masses to.    I exhale the judgement, the anger.   Yet somehow I'm still upset.   I'm terribly upset that this is the state of our health care system.   I'm terribly upset for all the people who aren't paying attention and are trusting the system to take care of them.   I know that the people (ie the nurses, doctors, etc) are doing the best that they can under an overwhelmingly ineffective healthcare system and a bureaucratic nightmare.

My nurse Mary, who gave the platelet transfusion gone bad, said that she had a client in the colonscopy department who had gotten some kind of GI problem in Mexico City.   The client had gone to the hospital there.   When the client returned home, he had a CD with all of the images taken in Mexico and pertinent information.     Nurse Mary said "we can't provide our clients with that kind of service."   In short, Mexico City has better healthcare than here.

When they say, Healthcare Reform....boy, we should listen.

The REVISED!! FOOD list

2010-06-08T18:41:00.004+05:30

Thank you to everyone who will be preparing (or have prepared) food for Karen. As you all know we are what we eat so here are a few newly revised guidelines.

The List has been REVISED based on Muscle Testing with a Chinese professional. Please note the differences.

GOOD FOODS: As much as possible, organic please.

Sweet potatoes and yams

Shitake Mushrooms

Millet and Corn

Amaranth in moderation

Sprouted Ekekial bread (twice a week, don't go crazy here)

Sea Salt and Redomond's Real Salt

Vanilla--Organic Whole Milk Cow Yogurt

Leafy greens in moderation (can be boiled – yes boiled – in salty water with lid off for 1 min. to reduce sulfur, and then prepared however you like): Kale, Dandelion, Collards

Fennel

Peas, Carrots, Corn

Apricot Seed Oil

Pomegranate (not too much)

Organic Grass-Fed lean meat (85%) beef, buffalo, roasted pork

Chicken, Turkey

Fish esp. wild salmon and cod, grouper and haddock

Bone Marrow Soup: Bones should be Broken (with a hammer with bones in a bag?) before boiled for 24 hours to really get the marrow.

Ghee in small amounts

FOODS TO AVOID:
Seaweed

Coconut (sadly)
Anything spicy or heating: onions, garlic, ginger, chile, cinnamon

Dairy products (except a little vanilla yogurt and ghee in small quantities)

Nuts and Seeds

Starches except where noted

Refined flours and gluten (wheat, rye, barley)

Sugar/sweeteners (even honey, maple syrup, etc.)

Vinegar or soy sauce

Oily/fried

All Mushrooms--except Shitake

Tumeric, Curry

SUPPORT MEETING on Monday JUNE 7, 2010

2010-06-06T05:00:00.001+05:30

Time: 6:30 pm

Place: Lynn's house - 331 Cadiz Road

Purpose: to compile a list of people who would like to be a part of Karen's care circle

Your help is needed and appreciated! Come to the meeting this Monday night to help us implement a plan that will support Karen in the best way possible for all of us. We are using the Share the Care format (www.sharethecare.org) andthe bigger the support circle, the better. All ways of contributing are possible. Some examples are: meal preparation, organization, paperwork, playing music, driving, fundraising, etc. Any skills are welcome, no matter how big or how small, no obligation necessary at this point. On Monday, we will give a brief description of the program, and then have you fill out a form regarding how you might be able to plug in. This will only take an hour at the most, so please attend. If that is absolutely impossible but you would like to be part of the network, please email Courtney at courtneykerr@hailmail.net and she will send you the form.

Looking forward to seeing all of you .

Sprung!

2010-06-05T18:52:00.000+05:30

I GET TO GO TO MY NEW HOME THIS MORNING! RELEASED FROM HOSPITAL-PRISON! I KNOW THEY MEAN WELL BUT A LUXURY STAY IT IS NOT! THE DOCTOR AND I HAVE A PLAN TO STREAMLINE SOME OF OUR PROCEDURES FOR FUTURE REFERENCE. IT IS A VERY HAPPY DAY INDEED!!!

Admitted

2010-06-04T06:40:00.000+05:30

FOR THE NEXT 48 HRS AT ST VINCENTS HOSPITAL. I HAD REACTION TO MY PLATLET TRANSFUSION TODAY. FEVER SPIKED AT 104.6. NOW THEY TEST ME FOR EVERYTHING. NOT MUCH FUN IMI'M AFRAID BUT I DO LIKE THE ABILITY TO BUZZ SOMEONE AND THEY SHOW UP TO DO WHAT UD LIKE...EXCEPT OF COURSE RELEASE ME!

What You Can Do To Help

2010-06-03T18:09:00.003+05:30

In April, I was diagnosed with very severe Aplastic Anemia, a life threatening disease. Aplastic anemia means that my bone marrow has stopped producing red and white blood cells and platelets. I currently require blood and/or platelet transfusions every week and I will be getting these transfusions at St. Vincent's hospital regularly. I am not contagious in any way. That said, while I have low energy, I am able to drive and function as a more or less normal human being. According to the Western experts, I need a bone marrow transplant in order to fully recover.

1. Become a Bone Marrow Donor

Information at http://www.livingdonorsonline.org/marrow/marrow4.htm

In order to become a Donor, your blood type and tissue antigens must be compatible with the recipient, and you must be healthy enough to withstand the donation process.

1. You must be at least 18 but not older than 60.

2. My blood type is A Rh positive or A+. If you would like to donate to me specifically, you must have Type A or Type O blood.

Option 1 (http://www.bonemarrowtest.com/) is $175 for the standard kit and $375 for the express kit. As you mentioned this is just to be tested, there is no commitment to donate to anyone except me.

Option 2 has some cost which depends on how well http://www.marrow.org/ has been treated by donors (in these tough times). Here you join the national registry and commit to donate to anyone that has a need and is a match (you can opt or refuse at any time, but this is clearly not hoped for). The organization said that the cost is about $100 for them and they required a minimum of about $50 to test and be enrolled in the registry.

Both organizations have a plethora of information on Bone Marrow Donorship.

2. Help me with Daily Existence

For people who are in my area, I need help with the daily chores that most of us take for granted: grocery shopping, organic nutritious meals in keeping with my dietary challenges, cleaning. I need to conserve what energy I have for healing. If you have special healing powers that you'd like to offer, please let me know. My friends and family have been very helpful, but it is a lot for anyone to take on. I have 0.0 immunity so if you have even the slightest sniffle, please do not come anywhere near me.

3. If you have type A+ blood AND live in Santa fe, please donate blood and/or platelets.

I have to get this organized through my doctors office so give me one more minute to figure this out. You can donate blood and/or platelets directly to me, but there is a form that I have to get my doctors to sign and fax over to the Blood Bank. I will ask my doctor today when I see her. As far as I know, blood cannot travel across state lines so you have to be local to NM to do this option.

4. Make a Financial Contribution

I am unable to work and will most likely be unable to work for quite some time. Not only do I have outrageous medical expenses (even though I have health insurance), but daily living expenses as well. The doctors estimate that from the time that they find a donor, it will take 4-9 months for the transplant process to be completed.

5. Pray

I believe in the power of prayer and positive thinking. I accept this challenge as an opportunity to grow and change and have every intention of making it through this strange adventure that I've been given.

You may email me at fieldofcosmos@gmail.com or ring me at 505.955.9644. Bless you all.

Love,

Karen

Low Platelets and A Very Important Question

2010-06-03T08:05:00.001+05:30

My head begins to swim, my vision blurs and I find myself crying for random events. They technically should have given me a transfusion today, but alas they have to get the platelets from Albuquerque so I have to wait until morning. Apparently, nobody at the hospital has any kind of control over the situation and the fact that I could die in the meantime (unlikely unless I hit my head, then I might internally bleed) seems totally unimportant to them. Really, this should be investigated by someone with a propensity for news and injustice.

My housing situation is still being debated by a core group of people, as I speak. The place I looked at today is available fully furnished, and totally lovely albeit a bit isolated, until mid-August. Are people willing to drive 12 minutes north of Wild Oats to be a part of my support group....say if it's your day to help me or bring me dinner or if I need help in the middle of the night (rare, but it does happen) whatever? I'll await your responses.

Quick Update

2010-06-02T18:15:00.000+05:30

My blood count was better yesterday. We'll see what it is today. Acupuncture seemed to have cured the rash, but I am still suffering from the piles and infection down below. I have swollen lymph nodes under the right armpit and the left groin.

Today I will go to look at what I hope will be my new place to live for the next couple of months. If it works out, I would like to move over tomorrow and could use any volunteers to help with the move. I do not have a tremendous amount of stuff, but I still have to get it all from point a to point b. Please email me at fieldofcosmos@gmail.com if you can help move me tomorrow, Thursday.

I really appreciate those of you who have come over to help by bringing me groceries or making me dinner. Thank you and Bless you.

What You Can Do To Help

2010-05-30T04:50:00.008+05:30

1. Become a Bone Marrow Donor

Information at http://www.livingdonorsonline.org/marrow/marrow4.htm

In order to become a Donor, your blood type and tissue antigens must be compatible with the recipient, and you must be healthy enough to withstand the donation process.

1. You must be at least 18 but not older than 60.

2. My blood type is A Rh positive or A+. If you would like to donate to me specifically, you must have Type A or Type O blood.

For those of you, who would like to donate only to me, the following information is required:

Seattle Cancer Care Alliance
825 Eastlake Ave E
PO Box 19023
Seattle WA 98109-1023

My name is Karen Mauthe. birthday: 11/16/1972
My SCCA doctor until June 6: Dr. Effie Petersdorf.
My SCCA doctor after June 6 until July: Dr. Doney
My bone marrow coordinator or Certified Search specilist Unrelated Donors: Greg Higgins

Greg's Info: Tele 800.804.8824
Fax 206.288.1011
email: ghiggins@seattlecca.org

Option 2 has some cost which depends on how well http://www.marrow.org/ has been treated by donors (in these tough times). Here you join the national registry and commit to donate to anyone that has a need and is a match (you can opt or refuse at any time, but this is clearly not hoped for). The organization said that the cost is about $100 for them and they required a minimum of about $50 to test and be enrolled in the registry.

Both organizations have a plethora of information on Bone Marrow Donorship.

2. Help me find suitable housing in Santa Fe.

Here's my condition as of right now: I am able to live by myself. I do not have hepatitis of any kind nor am I contagious in any way. I am dedicating the next few months to work to improve my condition through my yoga practice and alternative healing methods. I need very clean, centrally-located housing in Santa Fe to live. Just last week my friends and family recently cleaned out my old apartment and put all of my belongings in storage. Ideally, I would like flexibility with regards to my length of stay as nobody can predict how long it will take to find a suitable Bone Marrow Donor.

3. Help me with Daily Existence

4. Make a Financial Contribution

5. Pray

You may email me at fieldofcosmos@gmail.com or ring me at 505.955.9644. Bless you all.

Love,

Karen

A Decision Has Been Made

2010-05-27T09:02:00.003+05:30

I appreciate all of your comments regarding acceptance and surely there is much to be contemplated and worked on in this area for all of us. I am touched by your geniune concern as well as the generous donations that many of you have made---whether it be by prayer, by bone marrow test, by financial contribution.   I love and thank you all from the bottom of my heart.

After further and more benign conversations with my doctors today at SCCA, I am coming home to Santa Fe on Friday May 28, 2010.    The SCCA doctors emphasized that they are a bone marrow transplant center and since we were only in the very preliminary part of the search for a donor, my time with them is more or less finished for now.   They are happy to refer me to a hemdoc (ie blood doctor) and an oncologist here in Seattle to administer ATG if that is the route that I would like to take.   While they recommend ATG, they understand where I am coming from and if they find a donor in time and if I am still, in their opinion, strong enough to go through a bone marraw transplant, they will continue to work with me as my transplant center regardless of my ATG decision.   Or at least that's what I understood from today's conversation.

I spoke with Dr. Scott-Timperly, who was one of my oncologists in Sante Fe, today regarding my return home.   I expressed to her my very real concerns about the toxicity of ATG, given my current second violent reaction to the mild drugs they've been giving me, and she agreed with me that the decision to take the ATG route should not be taken lightly.   The drugs can kill you, straight up.  When I said the same thing to the doctors here in Seattle, they did not have much of a response. I expressed to Dr. Scott-Timperly my desire to give alternative healing methods a little more time before I decide whether the ATG route is appropriate for me or not.    She supports me in this decision, knowing that I understand the fully informed implications of my decision.

While I recognize that I am trying to dance between two partners that are perhaps incompatible (ie western and alternative medicine), I feel perhaps like it is okay to flirt with both.   I'd like to spend the next few months in Santa Fe, hopefully with the support of my friends and family, using Western methods to stay alive (ie blood counts, transfusions, antibiotics as needed) and alternative methods to see if I can begin to turn things around.    There are stories online of many people who chose to go the alternative route and are still alive today.   I am sure there are just as many stories of people who didn't make it and hence have no websites to tell their stories.   I am very clear on this point.

My reality is this:   it's 50-50 either way.   There is a 50% chance a bone marrow transplant will work.  According to my understanding of the ATG literature, it may work for a while or require multiple treatments but is generally not considered a cure.    For very severe Aplastic Anemias, one statistic said that only 45% of people see any results from ATG.   Dr. Doney, an SCAA doctor who has seen hundreds of AA cases in her career, said she didn't think ATG would work for me.    There are multiple horror and success stories online.

If these are my last few days on the planet, I prefer to have at least tried some alternative methods for a set period of time surrounded by the support of my family and friends.

SO....this brings up the next most logical question which some of you who helped pack me up and put me in storage on Monday are probably asking: "where will I live?"

I have a place to land initially.  My wish to the Almighty Universe (and to any of you with any ideas) is this:

I would like a quiet, centrally located, extremely clean space--which could sleep two people if I needed someone to spend the night--with a washer/dryer, full kitchen, full bath with tub, dishwasher, preferably no carpet, month-to-month (might as well ask for the ideal) that doesn't cost a small fortune.

If you know of such a place--or have the time to look for such a place--please let me know what you find.   Probably best to email me your suggestions to fieldofcosmos@gmail.com rather than posting them on the blog.

Thank you for all of your continued support.   I hope that you will come visit me or walk with me, once I return.   I remind myself often that Challenge is a Blessing and an Opportunity to Learn.   Ultimately, the result is up to God anyway.

My Sunday

2010-05-24T00:14:00.009+05:30

Covered from head to foot in hives. Not as bad as last time for those of you that saw me. But challenging nonetheless. Ugg.

My cell phone is acting up. If you can't contact me, please leave a message and I'll get back to you.

And the computer keeps flashing "dangerously low disk space" at me every three minutes.

If it weren't so darn inconvenient, it'd be hilarious.

Don't forget to check out the blog called "MOVE me" if you can volunteer on Monday then please call Caitlyn. Thanks.

Blood Type and Bone Marrow Donorship

2010-05-23T02:28:00.000+05:30

I am A Rh positive or A+.

I stole this verbatum from http://www.livingdonorsonline.org/marrow/marrow4.htm

Becoming a Donor

Your ability to donate bone marrow or peripheral stem cells depends on whether:

Your blood type and tissue antigens are compatible with the recipient, and
You are healthy enough to withstand the donation process.

To assess your ability to donate, there are several tests you will undergo. The form and timing of the tests will be determined by the donor registry, but here are typical tests:

1. Your Age

The first screen is age; you must be at least 18 but not older than 60 (age 55 for some registries). That is, at the very least you must be an adult to donate. And, research has shown that donations from older adults are less effective, hence a maximum age.

2. Preliminary Blood and Tissue Compatibility

The first step is to determine your blood type and tissue type. Testing is initially done by the swap of your cheek then done by drawing a blood sample. If you are a donor volunteer, these tests are part of the registration process. You pay for the testing, which ranges from $45 to $90. The results are input into the marrow registry and used to make a preliminary match with compatible recipients.

Blood Type. The first test determines your blood type. There are four blood types designated by the presence or absence of two antigens—the A antigen and the B antigen. Blood type A means you have the A antigen. Type B means you have the B antigen. Type AB means you have both antigens. Type O means you have neither antigen.

You must have a blood type compatible with the recipient or you will not be able to donate. Here is who can donate to whom:

Type A can donate to types A and AB.
Type B can donate to types B and AB.
Type AB can donate to type AB.
Type O can donate to types A, B, AB, and O.

Tissue Type. The second test run on the blood sample identifies your human leukocyte antigens (HLA). There are many different kinds of antigens, but there are three categories assessed for marrow donation, designated HLA-A, HLA-B, and HLA-DRB1. You inherit one set of these three antigens from each parent giving you a total of six HLAs.

A similar test is run on a blood sample from the recipient, and the antigens are compared. You might hear of a "six-of-six" match (all donor and recipient antigens match), or a "half match" (three of the six antigens are the same), or a "zero match" (none of the antigens matches). In the case of bone marrow donation, tissue typing is critical, so a perfect "six-of-six" match is required.

3. Detailed Blood and Tissue Compatibility

Once a potential recipient has been matched on a preliminary basis, more detailed compatibility testing is done. Again, a blood sample is drawn from you and tested.

DNA Testing. One test that's done is DNA testing. This testing is similar to the HLA testing but is more detailed. It uses sophisticated laboratory tests to determine the DNA of your antigens and compares the DNA code to those of the recipient.

Crossmatching. Crossmatching is a further testing of antigen compatibility. In this test, white blood cells from you are mixed with blood from the recipient. If the white blood cells are attacked and die, then the crossmatch is "positive," which is a negative as far as your ability to donate. It means the recipient is "sensitized" to you—the recipient has antibodies to some of your antigens—so the recipient's immune system would turn on the donated marrow and destroy it. If the crossmatch is negative, you are compatible with the recipient.

Note: the blood and tissue typing is rigorous because compatibility between the donor and recipient is essential to a successful transplant. As a consequence, many potential donors are ruled out. The odds of two individuals matching range from 1 in 20,000 to 1 in 50,000 depending on such factors as ethnic background. This is the primary reason why unrelated donation is so important.

4. Your General Health

At some point in the screening process, you will have a complete physical exam. You will share your medical history and possibly have a series of tests, such as a chest x-ray, electrocardiogram, blood tests, urine tests, and so on. Female donor candidates may also undergo a gynecological exam and mammography. You will also undergo testing for infectious diseases, such as HIV, hepatitis B, hepatitis C, syphilis, and other diseases. The purpose of the exam is to ensure you don't have any health conditions that would make it difficult for you to endure the donation process or that could result in your infecting the recipient with disease.

5. Other Assessments

Depending on hospital guidelines and transplant team protocol, there may be other assessments, such as psychological and financial reviews:

Donor and collection centers routinely provide an educational session on marrow donation as part of the registration and donation process. During that session you will be counseled about such topics as your ability to remain anonymous (for nondirected donation), the screening requirements, the risks of donation, your rights to withdraw, the impact on potential recipients, insurance coverage, possible subsequent donations, and alternative collection methods. (The content listed here is based on guidelines suggested by the World Marrow Donor Association.) This is an opportunity to ask yourself questions. What are your motives? Is it important to you to know the recipient and for them to know you? Are you committed to donation or were you pressured?

This educational session is an opportunity to explore any concerns you have about donation. Often, the donor or collection center will arrange to give you an out without embarrassment if you decide donation isn't for you.

You may also be asked about financial considerations. The monetary demands of donation are modest by comparison to whole organ donation, but you still need to be aware of the potential financial consequences. Can you afford the cost of the preliminary blood test? Can you get off work for testing, surgery (or apheresis), and recovery? Medical expenses generally are covered by the medical insurance of the recipient. But lost wages are not. What kind of paid sick leave and vacation do you have from your employer? Do you have other financial resources available if you need them? Do you need help raising money? There are many organizations out there that can help support you if financial resources are available.

MOVE me--volunteers requested, MORE info on Bone Marrow Donation & Blood Education and My Numbers

2010-05-22T08:46:00.002+05:30

There is a group effort, led by Caitlyn McHugh, to pack up my apartment and the yoga studio on MONDAY, MAY 24, 2010.    If you have a little time and know how to pack things in an organized fashion (I am an Iyengar yogi afterall), your help would be appreciated.   Please call in advance to let Caitlyn know that you are coming.

Coordinator: Caitlyn McHugh
Her phone #: 629-9870
Her email:   qtmcq@earthlink.net

Co-Coordinator: Helen Chantler
Her email: helenchantler@yahoo.com

EVENT LOCATIONS
8:30 am at my small apartment
directions:   as you head south on Aqua Fria away from St. Francis, you are looking for two big blue mailboxes on your RIGHT numbered 1717.   My driveway is EXACTLY across the street from these mailboxes (ie on your LEFT). There is a Caldwell Banker For Sale Sign there.   Follow the bombed out dirt road as it veers to the right.   We are the first compound on the left with a Coyote fence in front.   Call if you get lost.

11 am at the Yoga Studio
address: 1125 Cerrillos Rd at the Oddfellows Hall. on the corner of Railfan Rd.

Caitlyn requested that you ring her in advance if at possible so that she can coordinate more effectively.   The storage locker is on Cordova behind Wild Oats next the the shoe repair shop so it is not a far commute.

Thanks.

MORE Info on Bone Marrow Donation
For those of you, taking OPTION 1 (see blogs below) and donating straight to me, here is the Clinic Information:

Seattle Cancer Care Alliance
825 Eastlake Ave E
PO Box 19023
Seattle WA 98109-1023

My name is Karen Mauthe. birthday: 11/16/1972 (I'd like to celebrate it with you all this year!)
My doctor until June 6: Dr. Effie Petersdorf.
My doctor after June 6 until July: Dr. Done
My bone marrow coordinator or Certified Search specilist Unrelated Donors: Greg Higgins

Greg's Info: Tele 800.804.8824
                   Fax 206.288.1011
                   email: ghiggins@seattlecca.org

Several of you have asked some really good questions regarding becoming a donor. I will meet with Dr. Petersdorf on Monday and will ask them then. In the meantime, check bonemarrow.org for information. I'm too exhausted to do too much. That said, if you find something good I'll post it.

Such as, Susan's latest email to me:
It is also important to know that there are 2 types of donation procedures. One, as mentioned, is via blood - similar to a blood donation. The other is done with general or local anesthetic while marrow is removed from your pelvis/hip bone. This second procedure is quite safe, but obviously more involved than simply drawing blood. It is not uncommon to have some back pain for a few days after the donation.

Please think long and hard about Option 2 and becoming a registered donor. They really do not want people to register and then opt out when asked to follow through. My respect to all who choose this option.

Option 1 is much more expensive, but you receive the results and therefore will know your marrow "type". This is valuable for many reasons - helping someone in the future AND knowing your own type. Also - I can chose to whom I donate. Something I pondered quite a while on my daily run. There are many ethical questions about saving a life and what it takes to do that. Giving blood saves lives, I've been a regular blood donor ever since I turned 18 - but the process is very routine with close to zero consequences. I chose Option 1.

Blood Education
Every other day it's like gambling...only the stakes are so much higher. I pray that today is the today that my Blood Numbers are going to turn around....that they are going to go in the correct direction towards recovery. Every other day....I hold my breath when I get my numbers. So far they continually decline after I get a transfusion of red blood or platelets. Let's collectively pray that the go the other direction by, say, Monday? I am beginning to show a reaction to the platelet transfusions, which is not a good sign at all. At some point, theoretically, the body will reject the transfusions entirely and then a person is, well, dead. That's the rush on finding a donor!

DATE: 5/21/2010                 MY #s            NORMAL units
WBC white blood cells          0.89                4.3-10 thou/uL
RBC red blood cells                3.9                 3.8-5.0 mil/uL
Hemoglobin                            11.1               11.5-15.5 g/dL
Hematocrit                               32                      36-45%
Platelet Count                           39                 150-400 thou/uL
Neutraphils (immunity)            0.01                 1.8-7.0 thou/uL

The following defnitions were taken verbatum from http://www.medicinenet.com/:

White blood cells are the infection-fighting cells in the blood and are distinct from the red (oxygen-carrying) blood cells known as erythrocytes. There are different types of white blood cells, including neutrophils (polymorphonuclear leukocytes; PMNs), band cells (slightly immature neutrophils), T-type lymphocytes (T cells), B-type lymphocytes (B cells), monocytes, eosinophils, and basophils. All the types of white blood cells are reflected in the white blood cell count.

Red blood cell: The blood cell that carries oxygen.

Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.

The hematocrit is the proportion, by volume, of the blood that consists of red blood cells. The hematocrit (hct) is expressed as a percentage. For example, an hematocrit of 25% means that there are 25 milliliters of red blood cells in 100 milliliters of blood.

Platelet: An irregular, disc-shaped element in the blood that assists in blood clotting. During normal blood clotting, the platelets clump together (aggregate). Although platelets are often classed as blood cells, they are actually fragments of large bone marrow cells called megakaryocytes. Platelet count: The calculated number of platelets in a volume of blood, usually expressed as platelets per cubic millimeter (cmm) of whole blood.

Neutrophil: A type of white blood cell, specifically a form of granulocyte, filled with neutrally-staining granules, tiny sacs of enzymes that help the cell to kill and digest microorganisms it has engulfed by phagocytosis.

MORE IMPORTANT info on Registering to become a Bone Marrow Donor

2010-05-20T21:12:00.002+05:30

You might want to let people know some more details in advance.

Option 1 (http://www.bonemarrowtest.com/) is $175 for the standard kit and $375 for the express kit. As you mentioned this is just to be tested, there is no commitment to donate to anyone except Karen.

Option 2 is some cost which depends on how well http://www.marrow.org/ has been treated by donors (in these tough times). Here you join the national registry and commit to donate to anyone that has a need and is a match (you can opt or refuse at any time, but this is clearly not hoped for). I went with option 2. They said that the cost is about $100 for them, they required a minimum of $52 from me to process the test and enroll me. You must be between the ages of 18 and 61.

I realize that all of these costs are insignificant compared to a life, but they are costs, and these are tough times, and people might want to know in advance what to expect.

Send my best wishes (and a hope for a match) to Karen.
Brian Crone

A Holding Pattern

2010-05-20T19:20:00.000+05:30

One of my doctors in NM used to quip daily "Boring is good." That pretty much describes my holding pattern while my infection slowly clears and they begin the search for a bone marrow donor.

I had blood transfusions on Monday and Tuesday and a bag of platelets on Wednesday. I developped a small reaction to the platelet transfusion--nothing a little benedryl couldn't take care of, but not a good sign. The more platelet transfusions you get, the more likely your body will begin to react to them eventually to the point of no return. This is why there is such a rush to find me a donor. Please read the previous entries which describe how to become a donor and consider doing so as soon as possible.

Today’s medical technology allows testing of potential donors as well as actual transplants with little disruption to the life of the donor(s). Testing is as simple as a swab of the inside of the cheek. Once you have been determined as a match, then you will go through the process of donating marrow.The actual donor process is as simple as giving blood. The donor gives blood from an arm; a machine separates the blood-forming cells and returns the blood to the donor through the other arm.

Wouldn't it be great if it was someone I know who could be my donor? Or even a friend of a friend? Or a friend of a friend of a friend?

More REVISED bone marrow donor info

2010-05-18T17:32:00.000+05:30

SORRY FOR THE CAPS. THIS IS WHAT THE IPHONE CAN DO AND I DON'T KNOW HOW TO TURN THEM DOWN!

MORE INFO RE BONE MARROW DONATION:

SOME OF YOU HAVE SAID THAT YOU ARE ONLY WILLING TO DONATE TO ME AND DO NOT WANT TO REGISTER NATIONALLY. THESE R THE STEPS:

WWW.BONEMARROWTEST.COM. OR MAYB .ORG I'M NOT SURE AS IM BACK ON IPHONE ENTRY FOR NOW. PAY $175 AND THEY WILL SEND YOU A KIT. YOU SWAB YOUR CHEEK, WRITE A NOTE SAYING THAT YOU ONLY WANT TO DONATE TO ME KAREN MAUTHE AT THE FRED HUTCHINSON CANCER RESEARCH CENTER. THE STANDARD TURN AROUND TIME IS 7-10 BUSINESS DAYS SO IF YOU R WILLING TO DO THIS, PLEASE CONSIDER DOING IT SOONER RATHER THAN LATER. REMEMBER THAT QUOTE FM THE DR? "60% oF ALL SEVERE APLASIA CASES ARE DEAD WITHIN 4 MONTHS WITHOUT TREATMENT." ONE MONTH SINCE DIAGNOSIS HAS ALREADY PASSED FOR ME! YOU CAN CALL THEM AT 877-565-3287 FOR MORE INFO. TELL THEM TO FAX THE RESULTS TO 206-288-1013 WITH MY NAME. I KNOW IT'S EXPENSIVE, BUT I WOULD LIKE TO LIVE. STRAIGHT UP.

AND THIS, MY FRIENDS, LEADS ME TO A FEW OTHER THOUGHTS.

I REALIZE THAT SOME OF YOU MAY NEVER HAVE DEALT WITH A FRIEND OR FAMILY MEMBER IN MY POSITION. I REALIZE THAT ALOT OF YOU ARE SHAKEN THAT SOMEONE AS DEDICATED TO GOOD HEALTH COULD HAVE SUCH A CIRCUMSTANCE BEFALL THEM. IT UPSETS EVERYONES SENSE OF WELL BEING. WHILE I CAN'T TELL YOU HOW MUCH I APPRECIATE YOUR SWEET NOTES OF SUPPORT AND LOVE, I FEEL LIKE I MUST SAY SOMETHING DIRECTED ONLY TO A FEW OF YOU BUT I WOULD LIKE TO SAY IT PUBLICLY AND ALL AT ONCE.

I AM DEDICATED TO ALTERNATIVE THERAPIES IN EVERY SENSE. I HAVE WRITTEN BKS AND GEETA IYENGAR LETTERS ASKING FOR GUIDANCE IN MY PRACTICE. I AM WORKING WITH A NATRAPATH IN BC WHO WAS VERY UPFRONT ABOUT MY SITUATION. THE NUMBER ONE THING, HE SAID, IS SURVIVE! WHICH PRETTY MUCH MEANS THAT I SHOULD DO EXACTLY WHAT THE EXPERTS AT FRED HUTCH SAY. MY FRIEND WHO IS THE HERBALIST AT DR LADS ARYUVEDIC SCHOOL SAYS THE SAME THING. THE CHINESE HERBALIST I SAW LAST WEEK SAID THE SAME THING. THE ESSENTIAL OILS EXPERT, WELL HE SEEMS A BIT MORE FLAKEY IF I'M REALLY HONEST WITH MYSELF, SAYS THE OILS CAN CURE IT. DEAR SWEET CAMILLE COATES INVESTED ON MY BEHALF IN HIS ADVICE AND I RUB RIDICULOUSLY EXPENSIVE OILS INTO MY FEET AND LIVER EVERY NIGHT BEFORE BED. I AM TAKING SUPPLEMENTS AND HERBS AND HOMEOPATHIC REMEDIES. I JUST GAVE A COMPLETE LIST OF EVRYTHING I'M INGESTING TO THE FRED HUTCH PHARMACIST SO THAT SHE COULD CHECK TO MAKE SURE I'M NOT BAD DRUG/HERB COMBINING. I MEDITATE, STARE AT CANDLES, BREATH, IMAGINE WHITE LIGHT HEALING MY BODY. IM COVERING ALL MY BASES AS BEST I CAN.

THAT SAID WHILE I APPRECIATE YOUR OFFERS OF REMOTE ENERGY HEALING SESSIONS WITH PEOPLE WITH NAMES LIKE ANATASIA WHO CAN'T QUITE SEEM TO GET IT TOGETHER WHEN I SPOKE TO HER, I MIGHT SUGGEST THAT THE BONE MARROW TEST MIGHT BE A BETTER USE OF YOUR CASH. SAYING THINGS LIKE "THANK YOU SO MUCH FOR TAKING SUCH GOOD CARE OF YOURSELF" WHILE I'M GETTING A BLOOD TRANSFUSION SO THAT I CAN CONTINUE TO LIVE---WELL IT'S NICE BUT IT DOESN'T MAKE ME FEEL SUPPORTED IN A REAL WAY. I WANT TO THANK ALL OF YOU WHO HAVE BEEN REAL WITH YOUR SUPPORT. IT HELPS ME THROUGH MY DAY WHEN YOU SAY "I'M SORRY YOU ARE GOING THROUGH THIS AND WHAT CAN I DO TO HELP?" AT THE MOMENT MY ANSWER TO THAT QUESTION IS, PLEASE CONSIDER A BONE MARROW TEST IN MY NAME.

BUT THERE WILL BE OTHER WAYS TO HELP ALSO. I MOVED INTO MY OWN STUDIO APARTMENT CLOSE TO THE CLINIC ON MONDAY. THE PLACE IS FOR FRED HUTCH PATIENTS--A QUIET COMMUNITY OF BONE MARROW TRANSPLANTEES. I AM APPLYING FOR FINANCIAL AIDE--tHE RENT IS $1550 PER MONTH W PARKING. A FRIEND OF MINE IS LOOKING INTO A DONATE PAYPAL BUTTON FOR THE BLOG AND I'M AFRAID I HAVE BEEN LAX IN MY DUTIES TO MAKE THIS HAPPEN SOONER. BUT IT IS COMING. I AM ALSO LOOKING INTO PAID AFTER TRANSPLANT CARE SO THAT THOSE OF YOU WHO HAVE OFFERED TO COME CAN BE FRIENDLY SUPPORT RATHER THAN PRIMARY CARE. THIS IS THE VERY REAL SITUATION I AM FACING. FOR THOSE OF YOU THAT HAVE OFFERED TO COME HELP PLEASE DO NOT TAKE MY SEARCH FOR PROFESSIONAL HELP AS ANYTHING BUT AN EFFORT TO REDUCE MY DEPENDENCY UPON YOU IF YOU CHOSE TO COME. I UNDERSTAND THAT THE BONE MARROW TRANSPLANT IS PRETTY INTENSE AND SKILLED NURSING IS NOT A BAD IDEA ALBEIT PRICEY.

MY NEW MAILING ADDRESS IS:
KAREN MAUTHE
525 MINOR AVE NORTH #608
SEATTLE, WA 98109
mY FAX: 206-262-9246
MY LAND LINE: 206-262-9063

THANK YOU ALL FOR YOUR KINDNESS AND SUPPORT.

"...THE KINDS OF AWAKENINGS: AWAKENING FROM THE DREAM OF ORDINARY SLEEP, AWAKENING AT DEATH FROM THE DREAM OF LIFE, AND AWAKENING INTO FULL ENLIGHTENMENT FROM THE DREAM OF DELUSION." PEMAPENA CHODRONCHODRONE

How to Become a Bone Marrow Donor

2010-05-16T22:14:00.001+05:30

This will tell you how to become a bone marrow donor:

http://www.marrow.org/JOIN/Join_Now/join_now.html

If you can't save me, you might be able to save someone else! They formally registered me on Friday and it apparently takes them anywhere from one to three months on average to find a match. If you're interested in seeing if you can match me, then please fill out their form and do what they say as soon as possible.

Don't worry....if you change your mind later, you can always decline the offer if you are selected.

Thanks for asking, those of you that have.

The Latest Doctor Update

2010-05-16T07:00:00.002+05:30

I've slept most of the day, exhausted from a very busy week indeed.   Those hospital folks keep you on a tight schedule!    I finally couldn't stand the smell of the bedsheets anymore (due to the night sweats) and so I'm up as the sheets are being washed and dried.

I went on a walk at the nearby trail near Richard's house.   I have a yellow fluffy cat friend who meets me on the trail walks about 10 yards with me, plops himself down in the sun to wait for my return, then he'll walk back to whence he began with me.   It's a kind of casual saunter and I think that the two of us enjoy the company.     While some days, it's a struggle to motivate....walking outside I think is a key component to healing and I don't really care how strange I look as I swing my arms around or take a paschima namaskarasana or an arm gomakonasana as I slowly walk down the trail.   What I notice the most is the speed at which most people are moving.   Everyone seems to be pushing themselves....walking fast, jogging, bicycling....we are a perhaps a culture of speed freaks (myself formally included).   This illness has slowed me WAY down and I look at it as God's gift to literally stop and smell the roses (though I have to do it from a distance cause my neutrophenia requires distance from plants).

Yesterday, my blood count was low again---which was no great surprise to me as I have noticed that I get the blank tv sound buzz in my head when my blood is low.    So yesterday evening I got another platelet transfusion and am feeling a bit better.

The serious conversation with Dr. Done went as expected I suppose.   She was my admitting doctor who talked to the Santa Fe doctors and will be my doctor in June. (They switch off one month at a time).     What amazes me the most about the doctors I've dealt with at the Fred Hutchinson clinic is their amazing directness, clarity, and communication skills.    They are, in some sense, better yogis than a lot of people I know.   They look you in the eye and they tell it how it is.

Dr. Done has been at Fred Hutch (as everyone here calls it) for years and has had 100s of cases of Aplasia (short cut for Aplastic Anemia) unlike most doctors who might encounter one or two cases in their entire careers.    She is in her mid-fifties to early sixties and one gets the feeling that she is one tough cookie whose been around the block a few times.   I am pleased that she will be the attending doctor in June.

So here's the deal:
1. I fall into the VERY severe aplasia category. "Your bone marrow is basically empty."
2. They can't start any kind of treatment until my infections clear up which might take up two weeks or more since I have almost no white blood cells.   I am on the big BLUE horse pills of very high intensity to clear the infection in addition to hormones for the bleeding to stop and antiboitics of various colors and flavors.   For someone who never liked to take pills, boy the irony is obvious.   And this, she assured me, was just the beginning in the pill department.
3.   In her opinion, ATG is unlikely to work for me due to severity of my aplasia.    It takes time for the cells to grow and I have such few cells that she doesn't think that it will work.
4. It takes about 3 months to see if ATG will work.
5. "60% of severe aplasia cases are dead within 4 months without treatment"
6. If she were me (I asked the question),
a. she would formally register in the bone marrow donor worldwide database immediately. (My response was: WHAT? I'm not already registered)
b. she would call the bank and find out, based on my tissue type, how long they think it might take to find a donor.   The other doctor suggested that I have a common tissue type.
c.   the ATG treatment before a non-donor transplant is the prescribed standard of care that the hospital generally recommends.
d.   i am an unusual case (of course) due to my recent exposure to hep a and here's the kicker elevated levels of lead (for certain) and possibly arsenic and gold most likely from the aryuvedic pills I took in India (read this as a warning people).   They know for certain that gold can cause aplasia.   The arsenic and gold tests should be back soon.
e.   if the bone marrow bank thinks that they can find a donor soon, then i might just skip the ATG part....if the team of doctors that meet next Wednesday agree.    She was very clear here....while everyone tries to remain unbiased in their recommendations, there is always bias and if they are going to think "outside of the box" with regards to my case, they prefer team consensus.     I'm all for that. Call them all in, as far as I'm concerned.
f. they prefer me to stay out of the hospital as much as possible, but if I need to be there, they will admit me.

So it's a bit more waiting it would seem.   This is both a blessing and a curse.    I still hope that the essential oil regimen I'm on will kick in any day now.   I still have at least 10 more days for miraculous healing to occur.   The option at the end of the tunnel is, well, not very rosy at all.

Somebody asked me about my strength today.   My physical strength varies with my blood levels. My inner strength mostly remains consisitantly strong.   I want to live.    The person responded "If you can maintain inner strength, you must be truly amazing."   My response is this: when you are in my shoes, there is not much else besides acceptance and a healthy dose of pragmatism.

BKS Iyengar was kind enough to email me regarding a sequence question I asked him. Beyond the technical practice information, he wrote:

"As you are afflicted you have to accept this with calm mind and work on alternative means to improve. You may have to stick to yogic discipline as well as take the support of modern medicine. Yoga does nullify the bad effects of drugs. So stick to practice."

More pragmatism.

My address will be changing in the very near future so please do not use Richard Schachtel's address or contact information from this point forward.   I'll let you know what the new info is as soon as I confirm it.

Thank you all for your continued support and God Bless.

Better today

2010-05-14T06:16:00.000+05:30

It's a whirlwind. Days seem to fly by.

The Infectious Disease doctor had a different opinion on the the infected absess. I am now hopefully on the right drugs to clear up the problem.

I will meet with the housing department at the clinic tomorrow. My place to stay expires June 1. I am so thankful to Richard for offering me such a safe and lovely landing pad here in Seattle. His support and generousity has been above and beyond the call of duty. I will also investigate hospice and full-time care options.

Tomorrow they will check my blood again in the morning. Then I will meet with the new-lead-doctor-for-this-week regarding the very serious choices of treatment. We are still waiting for test results and I doubt that they will begin any kind of treatment while this infection continues.

Thank you all for your continued support.

One Damn Hard Day

2010-05-13T10:25:00.001+05:30

I started bleeding again yesterday afternoon.   By 2 am, I was gushing complete with blood clots, dizziness and a fairly healthy dose of fear. By 4:30 am, I called my new friend Emily, a twenty-five year old yoga teacher-in-training friend of Richard's who I met on Monday.    She arrived at the house by 5am and spent the greater part of her day helping me.

By 9:30 am, I gave blood at the clinic to check my numbers. By 10 am, I received a bag of blood. By 11:30 am, my doctors came down to see me in the transfusion lab to tell me that so far what bone marrow results they have confirm aplastic anemia. By 2:30pm, I drank a 1/2 gallon of dye.   By 3:30 pm,   I had my first ct scan.   By 4:30 pm, I met with the obgyn who confirmed that my piles were not just piles....but rather an infected absess.    By 6pm, I picked up my last prescription of the day.   By 6:30pm, I sat in the tub and ate for the first time since 8am (unless you count a few cookies after the ct scan).   By 9:30 pm, I got the call that said I need to go to the hospital right now to get an iv of antibiotics.   All I can say is that I sure hope I don't react to this dose.

The time for me needing 24/7 care is approaching fast.   If you have time in the near future, please let me know at fieldofcosmos@gmail.com.   I will try to put together a schedule.   I have miles for a few plane tickets and my car is here for your use.   We have a private bedroom for your use that is next to mine upstairs. We have our own bathroom.   I'm happy to buy the food.       I am pretty easy except for needing someone around in case I fall, or need to eat or need yet another ride to the clinic.

Richard and Emily cannot do it all. I should know more in the next few days regarding the timing of things.   I'm not sure when exactly 24/7 will need to begin but if you email your dates, I at least have options.

God Bless you all.

Courage

2010-05-11T09:15:00.003+05:30

Someone thanked me today for my courage.    I appreciate the compliment, but I would be mistaken to accept it quietly.   It simply isn't true.

Courage is when someone runs into a burning house to save a child.    Or when someone runs into a battlefield to protect his home, his country, his people.    Or when someone gives up a kidney to save a loved one. It involves a choice to put oneself at risk to save another.

That is not my situation.    I have had no choice.    My platelet count was 4 today (300 normal).   I had to return to the hospital this evening for a platelet transfusion so that I can stay alive.   There is no choice involved.

There are moments when I feel like standing up in a crowd and shouting at the top of my lungs "This is not FAIR!"    There are moments when I find myself judging other patients who have obviously not made the same healthy choices that I have in my life.    There are moments when I weep.

There was no choice in my situation--thus no courage.   There is a lesson in acceptance and there may be perspective.

Perspective that we should cherish every single moment, every single blade of grass, every single note of our favorite song.   Perspective that we should cherish each other, let bygones be bygones and let love guide us.   Perspective that we should banish every single negative thought that dares to enter our consciousness, that time is precious and that there is no time for negativity.

Are we making peace or war with every single moment of our lives?   This is the question that takes courage for each of us to answer to noone but ourselves.

Reflections

2010-05-09T23:30:00.001+05:30

the plum tree wants to produce plums
the rolly polly wants to keep walking rather than rolling himself up in a ball
the purple flowers next the Richard's steps where the morning sun shines want to bloom

the sun shines regardless of how we are feeling. thank God.

Important Lessons Learned Over the Past Three Weeks

2010-05-09T04:44:00.000+05:30

Ok. It's time. More than just the bare minimum entry. Read at your own risk.

These are the most important lessons I've learned over the past few weeks.
1. Honesty is the best policy. Humility is key.

2. Let bygones be bygones. Whatever anyone did to piss you off, let it go. Stephan Stills had it right: "Love the one your with" might just be one of the world's most important truths.

3. Watch out for Essential Oils. They might just be more powerful than you think.

4. When the nurse asks "what is your method of contraception?," you are apt to bring laughs to the room if you quip "abstinence, unless a vibrator counts?" Making people laugh through this ordeal helps the situation somehow.

5. Some antibiotics have fun side effects like hives or here's a good one: leukemia. There's a list somewhere on the internet listing the bad boys and the not so bad boys. I'll post this info when Helen finds it again (thanks Helen).

HIVES & RASH TREATMENTS that WORK and DON'T WORK
a. Aloe Vera Gel out of a bottle is NOT the same as fresh aloe vera straight from the plant. Citric acid as a preservative does not make rashes happy.
b. Aloe Vera Gel will initially HEAT the rash up, thus making it more itchy and red before it cools it down. If you are into hard core S&M, then try it....otherwise I might skip this in the future.
c. Rubbing handfuls of cool Oatmeal in a lukewarm shower will help heal your skin, but not your drain.
d. Calendula cream or gel has seemingly limited results....will not help the itch but supposively will help heal the skin. I am not personally convinced.
e. Covering your clean body in a thick layer of cornstarch will cool the skin and give some relief for several hours until you begin to feel like a cake and then need the sheets changed. Beware: it make your room reminiscent of a 1970's cocaine party...powder everywhere!
f. This one is very IMPORTANT: fresh cilantro leaves crushed in your blender with very little water is a LIFESAVER! Get gauze. Put it over your rash (and liver), add freshly mashed cilantro on top, put another layer of gauze on top. It's amazing. It will pull out the heat from the body. Note to self: Be ready to sacrifice your sheets to the cause, but this is a small price to pay for nearly instant relief.

6. Piles are NO joke. The boxes on the various ointments say different things. One says 1/5 of all adults experience these sometime in their life. Another box claims 3/4 of Americans have them. The part that I can't get over is that somewhere between 1/5 and 3/4 of you people are walking around with these things looking normal. How is this?? I'm either much more sensitive than the average person or have a lot less grace--most likely both--but I can't walk or sit properly to save my life right now!

PILES TREATMENTS that WORK and DON'T Work
a. Tucks ointment cream. Forget it. Waste of time. Prep H? Petroleum AND shark liver? WHAT? It made things worse. Skip it.
b. Tucks witch hazel whips. Kinda cools for about a minute. I'd give them a 2 out of 5 stars. Better than nothing.
c. Tumeric mixed with Sesame Oil. (Note to self: the Internet lies) AGGHHHH! Sesame Oil is heating. Big mistake. Don't do it. Plus even after you have wiped the area clean again, even bathed, for up to two days later Tumeric will continue to stain your undies. Note to Self: tumeric does not come out of undies or sheets. Oh and here's a fun side effect: you get to tell your nurse as she's taking a urine sample that they might find an increased amount of tumeric in the sample. Puzzled looks ensure, though the humor aspect cannot be underestimated.
d. Warm Epson Salt baths actually provide the most relief. Baddha Konasana is reported to have the same effect. So the frequent combo of Baddha Konasana in a warm Epson Salt bath has seemed like a pretty good idea to me. Many of you are getting return phone calls while I'm here. Sorry if you hear the water running.
e. Castor oil seems to help soften the area effectively. My Ayurvedic friend suggested tumeric again, but I just couldn't go there again.
f. One tablespoon of wheat germ a day is supposed to help. I'm on my second tablespoon now--in fact as we speak--so I'll have to let you know.
g. Why not add organic prunes to all the grains you cook? "Just don't overdo" that is the warning from my nurse Georgina.

7. My car is being trucked here scheduled to arrive on Monday courtesy of Doug Lawerence. Emily Budziak has also gone above and beyond in helping me with all the details. Candy Jacobson's support has been unsurmounted. Please thank them all if you see them.

8. My friend, Richard Schachtel is a superior human being. He has given me a place to live. He has offered a spare room for any of you that are willing to volunteer when and if the going gets tough later in my treatment. He has taken me to all of my appointments and been there with me. He has been to the pharmacy and the grocery store with various strange requests about a million times since I got here. If you have the time, please send him a thank you card. (And this is also my Seattle address for now)

Richard Schachtel
9209 49th Ave NE
Seattle, WA 98115
rschachtel747@gmail.com

THANK YOU ALL FOR YOUR CONTINUED SUPPORT. If I don't ring you back right away, please know that I'll eventually get around to it as my energy allows.

I Met the LIME lead Dr. Petersdorf

2010-05-07T19:01:00.000+05:30

Dr. Petersdorf, an adorable middle-aged Chinese woman with hip glasses sliding off of her nose, softly yet competently explained the situation to me yesterday.

Straight up: They don't know what's causing the dysfunction of my bone marrow.

What they do know:

1. I have a common tissue type so if a bone marrow transplant is ultimately decided as my fate, there will likely be a donor somewhere in the world. They also know that non-donor matches have a 50% or less percentage of working. Had my brother been a match, I would have had a 70% chance of success.

2. Some of the labwork finally came back. They only had 3 bone marrow cells to analyze (which is not enough to diagnosis conclusively). The chromosomes in all three cells appeared normal--an indication of Aplastic Anemia. If the chromosomes were abnormal, then it might indicate Leukemia or something else like that.

3. They are going to call in all the specialists: the chromosome people, the cancer people, the infectious disease teams, the hemo doctors. I, apparently, am going to be a Fred Hutchinson multi-team project.
We will most likely not have a diagnosis or treatment plan for up to three weeks.

What they want to know:

What Ayurvedic pills I took in India. We called and texted my Ayurvedic Doctor in India this morning requesting samples as well as the names of both the pills and herbs he prescribed. Because his English is not so great, we called and emailed my former landlord, Neena Shahani, who speaks fabulous English, to ask her to ensure that he understood our request and the importance of receiving this package as soon as possible.

Today:

I have a bone marrow aspiration at 3pm. We are starting over from scratch. We are praying that there's more cells in the marrow than the last time.

Unfortunately ...

2010-05-07T05:40:00.003+05:30

Karen's brother is not a match.

Fred Hutchinson Cancer Research Center

2010-05-06T20:07:00.000+05:30

Yesterday was my first appointment with my nurses. I'm part of the LIME team. The center was hip, clean, busy and extremely well-organized. One got the feeling: Bone Marrow Transplant? No big deal. 0.0 Immunity? No problem. We have lots of patients with that.

They drew my blood. Interviewed me. Examined me. Educated me. Made several appointments for me. As expected, they still have to run more tests on me. Today I meet my LIME team doctor. Tomorrow I have another bone marrow aspiration. In a few more days, I will have their diagnosis. Easy in. Easy out.

In the meantime, I have decided to have a yoga marathon day today. Now that I'm not quite so exhausted from the traveling, I am inspired to practice as much as I can today. Pranayama. Mild supported backbends. Supported Inversions. Twists. Every liver releasing pose I can think of in hopes that my bone marrow will revive before the tests tomorrow.

Om. Shanti. Shanti. Shantih. Hare Om.

If there's any possibilty for enlightenment, it's right now, not at some future time. Now is the time.

2010-05-05T21:36:00.001+05:30

I made it to Seattle where I have my initial consultation at the Fred Hutchinson Center this morning. They expect it to b a 5 hr interview! Yesterday when I arrived I met with Dr. Chan, a Chinese doctor and natropath who used to work at the Fred Hutchinson Center. He was the first person to explain to me what's going on: in short a combination of poor genetics, a too strong immune system due to my healthy habits and exposure to Hep A all combined to make me a 1:2 million candidate for rapid onset aplastic anemia. He's very practical.... he told me to ask to be admitted to the hospital today, a necessary component to protect me from infection with my 0.0 immunity, told me to keep taking the antibiotics, emphasized that survival is the number one component here, and gave me a myriad of good questions to ask while educating myself re the disease. Because he lives in BC and is not licensed here, I will only be able to see him occasionally....he drove all the way from Vancouver
yesterday just to see me.

Let's hope the hospital and my insurance company will do the right thing and admit me soon!

Hope u all r well!

Love,
Karen

If there's any possibility for enlightenment, it's right now, not at some future time. Now is the time.
Pema Chodron

SEATTLE!!

2010-05-05T05:09:00.002+05:30

In short ... Karen is in Seattle ... yes, it's for real. After several days of getting on the phone and advocating for herself on all sides, she successfully coordinated the move. I'll have to say, it was very impressive. It took a good deal of perseverance and logistics ... calling, recalling, telling, retelling, explaining, insisting, waiting, even a little crying. And, a good deal of packing and moving and tying up loose ends, and overcoming several Mercury retrogrades ... losing keys and masks and prescriptions, and even a plane delay; but she is safe and sound, and hopefully getting some much needed rest after the journey. Tomorrow she will be meeting with her doctor at the Fred Hutchinson Center to discuss the next steps. Send good thoughts and prayers ... as many and as big as you can possibly muster!

From Karen on Saturday

2010-05-01T19:55:00.000+05:30

It looks like I will be flying to Seattle either Monday or Tuesday of next week. The insurance company will approve my transfer if the hospital pre-admits me AND the hospital will admit me if the insurance company approves the transfer. Classic. My nurse is so irate over the fact that this game has been going on for over a week when I have a potentially fatal disease that she is going to write Obama a letter.
I got a platelet transfusion yesterday and agreed to pop their pills in hopes that the horrific red and purple welts all over my body from a reaction to their antibiotics would subside. I've also been practicing mild twists and nadi Shona, which is a cooling breath for the body. While I am still pasted from head to foot in cornstarch, which seems to cool the skin, I am feeling a bit better today. One blessing at a time.
Again I want to thank you all for your ongoing love and support.

Love, Karen

Yoga Blocks -- come and get 'em, while they last!

2010-05-01T06:39:00.007+05:30

The good news is that Karen's insurance company has agreed to her receiving treatment in Seattle ... contingent upon the center pre-admitting her. It sounds like the contingency is routine, and they should make their decision over the weekend. Yay.

And, tada!, just in time for needing to purchase the airline ticket ... Karen is offering the hand carved wooden yoga blocks for sale right here on the blog! All Karen's students have intimate experience with these German wonder blocks, and know how indispensable they are. Only $175 each! Three incredible varieties. Get yours before they are gone! (cash is the best). Call fast!

Info about Aplastic Anemia at www.aamds.org. There's a society for everything apparently!

2010-04-29T12:55:00.001+05:30

Life is a Blessing ...

2010-04-29T06:00:00.001+05:30

Hi everyone!

I am excited to tell you that we have a special guest teacher for Thursday April 28. The lovely Caitlyn McHugh is a certified Iyengar teacher with years of practice. I hope that you all will join her for our regularly scheduled classes.

As of May 1, Yoga Different will be closed indefinitely. I have been diagnosed with Aplastc Anemia and am currently awaiting insurance approval to be transferred to the Fred Hutchison Cancer Research center in Seattle. I want to extend my gratitude to all of you who have supported Yoga Different for the past five years and to those who have offered food, blood and love over the past week. I look at this time as an opportunity for healing and to experience joy in every area of my life. Life is such a joy and this is reminder for all of us of its blessing.

I will keep my blog updated as best I can. Please check www.yogadifferent.blogspot.com for current information and what ponderings I might have.

Love and blessings to you all,

Karen

Tuesday Walk

2010-04-28T04:05:00.003+05:30

I visited with Karen today and we went for a little walk. She looked so adorable that we had to stop and pose her for a couple of photos. Always the height of style!

Karen's white blood cells and platelets were down today, though she was in great spirits and had a lot of energy. She ate a good lunch too ... in the hospital Healing Garden ... it is abloom with spring.

Right now she is waiting to hear from her patient advocate at the hospital as to whether her insurance company will agree to cover a move to the Fred Hutchinson Cancer Research Center in Seattle. She should hear in the next day or so ... maybe even this afternoon. All fingers crossed!

She is SUPER THANKFUL for the blood donations and for the delicious meals and visits and sends her love to everyone.

A Few Short Messages

2010-04-27T02:46:00.001+05:30

Here are a few short messages from Karen this morning:

1. Bleeding is less today!

2. Red blood count is down. :(

3. Blood transfusion today. Please donate a or o type blood. See previous blog 4 details.

4. Please call me before visiting. 505-690-1021

5. No flowers raw fruits or veggies

6. Nothing spicy. Pitta pacifying foods (Linda has a list....mayb u could get it fm har) soft foods. My gums are sore

7. Bless you all.

xo k

Support group email is fieldofcosmos@gmail.com

2010-04-23T22:03:00.001+05:30

Mercury retrograde's weird twist of fate

2010-04-23T21:58:00.000+05:30

IT IS NEVER SUPPOSED TO HAPPEN 2 U. THE CAPS ON THE IPHONE WON'T STOP. OUR FAVORITE VEGGIE RESTAURANT ANNAPURNA HAD AN ELECTRICAL FIRE AND IS NOW CLOSED. AND I AM HOOKED UP TO AN IV IN THE HOSPITAL NEEDING FREQUENT BLOOD TRANSFUSIONS TO STAY ALIVE. LUCKILY, I DO NOT FEEL THAT BAD. WE ARE STILL WAITING FOR TEST RESULTS TO FIGURE OUT HOW TO TREAT WHAT IS CALLED "APLASTIC ANEMIA" WHICH MEANS MY BONE MARROW IS NOT PRODUCING BLOODCELLS OR PLATELETS.. I'VE BEEN BLEEDING FOR 10 DAYS. IT IS CONSIDERED SEVERE. IF YOU LIVE IN SANTA FE AND ARE A POSITIVE BLOOD, YOU CAN DONATE DIRECTLY TO ME BY CONTACTING SF UNITED BLOOD SERVICES AT 2801 RODEO RD OR AT 438-0678. YOU CAN SPECIFY THAT YOU WOULD LIKE TO DONATE TO ME. IMI'M AT ST. VINCENTS HOSPITAL ROOM 2227. IF BLOOD DONATION IS NOT YOUR THING, HOMEMADE NOT SPICY NO DAIRY SOUP IS ALSO APPRECIATED AS WELL AS VISITS. SOME PEOPLE ARE ORGANIZING A SOUP GROUP, IF YOU WOULD LIKE TO BE A PART OF IT, PLEASE SEND ME AN EMAIL AND I WILL FORWARD IT TO THE LEAD ORGANIZER AS SOON AS WE DECIDE WHO THAT MIGHT BE. SEND THE EMAIL TO

IDI'D

Ponderings on Isvara.

2010-03-17T02:02:00.000+05:30

As children, we are totally dependant upon the people who are taking care of us.   We must intrinsically trust these people.    A newborn infant is incapable of anything and therefore must trust the adults surrounding him.   As we age, we find that our caregivers with whom we put all of our trust as infants are not at all infallable.   They are human beings with likely as many faults as virtues and so we begin to distrust what we once thought infallable.    Then many of us are introduced to a concept of God, which goes something like this:   Pray to God. He will provide Everything.   So we pray and no, we don't get a Porsche for our sixteenth birthdays or some tragedy hits our lives and so many of us fall into a doubt of God.   Our ego, very often, becomes our God.  We learn to trust ourselves and little else.

"Isvara Pranidhanani" is a niyama (established observance) in Patanjali's Yoga Sutras and is often translated as "surrender to God."    For me this was a difficult concept to comprehend, due to years of religious belief abstinance.  However, if I change my defintion of "God" and take it not in the "old man in the sky with a long white beard who is clearly defunkt in his duty to provide good in the world"---well, that's a whole other story.

Swami Dayananda translates "Isvara Pranidhanani" as "living a life in Awareness."   This to me is a palatable definition and a worthwhile cause.   In spite of all of my personal challenges, I can clearly see that there is nothing else of any real significance beyond "Awareness."   This idea helps me to put to rest my restlessness and my insignificant desire for more of this or more of that.   This idea helps me to find calm and appreciation for my opportunity to serve my community and the world in whatever capacity I can.  And I can find trust that "Awareness" is always there....whether I chose to recognize it or not.

Wild Spring

2010-03-14T05:13:00.002+05:30

One minutes it's snowing rendering my driveway nearly impassable and the next minute it's sunbathing weather. Ahhhh--Spring in New Mexico.

With these swift weather changes, I find myself dressing in layers---a literal wearing of summer to winter. The exterior shell of clothing, however, is comparably easy to manage compared to the interior emotional world that I find myself swinging through. One minute I'm enjoying a beautiful spring day contently watching the irises and tulips beginning to bud in my garden. The next minute I find myself restless for adventure, a kind of prehistoric drive to move. Where and how I move doesn't matter, but the need to make a move is there.

One day I drove to Albuquerque to see friends. The next day I drove to Ojo Caliente to soak in the amazing hot springs and lay in the sun sheltered from the brisk wind. Someone mentioned the South by Southwest music festival happening in Austin right now and my mind immediately jumped to an imaginary journey. The crowds. The dancing. Yes, I'm certain that's what I need to overcome my restlessness.

Then I remember that I just got back from India with a substantially bruised wallet. As reconciliation to my daydream flight to a music festival that I no nothing about (i.e. what kind of music do they play?), I remembered that the food in Austin was not exactly my cuppa tea the last time I was there.

Mostly, I'm astonished at how fast my mind can switch itself around from full contentment laying in the sun literally watching the flowers grow to full restlessness and the need to move faster.

So instead of heading towards Austin, I’m working on my standing poses incorporating them into sun salutations and forward bends. Sun salutations and standing poses give me the satisfaction of movement....kinda like driving around all over the state. Forward bends give me the opportunity to be present and calm....kinda like watching the flowers grow. Thank goodness for yoga!

Maestro Zakir Hussain

2010-03-10T20:05:00.003+05:30

Wow. What else can you say? With an ensemble of drummers and two violas (at least that’s what I think they were), he played at the Lensic last night. The dexterity of their fingers is nearly out of this world. I'm not sure I've ever seen someone's fingers move so fast. In fact, I'm not sure that I've ever seen ANY human part move so fast....and in rhythm! Actually, Zakir seems to have about 10 rhythms going on at once....as if each finger has its own independent rhythm.

Though Ustad was not with Zakir last night, this is a fantastic sample of what I'm talking about: http://www.youtube.com/watch?v=oLvKNlB1pB0

The joy, the concentration and the awareness that these people demonstrate when they play is meditation in action. They are totally absorbed in the moment and in what they are doing. It is prayer. It is presence. It is perfection. It is yoga.

Zakir’s playing reminded me of a verse in Chapter 6 of “The Bhagavad Gita According to Gandhi” which I will now reproduce for you along with Gandhi’s commentary (pg 120-121).

(18) When one’s thought, completely controlled, rests steadily only on Atman (God within) when one is free from longing for all objects of desire, then onc is called a yogi.

(19) As a taper in a windless spot flickers not, even so is a yogi, with this though controlled, seeking to unite himself with Atman.

(20) Where thought curbed by the practice of yoga completely ceases, where a man sits content within himself, Atman having seen Atman.

“Atman having seen Atman, that is, when his mind has become absorbed in the Atman and he lives for ever content in the Atman.

(21) When he experiences that endless bliss beyond the senses, which can be grasped by reason alone, wherein established he swerves not from the Truth.

If a person has perceived with his intellect the reality which God is, if he has understood with it his duty and then yoked himself to the chariot of God, if, shaking off lethargy, he has entered his name in God’s office for duty—such a person will never be shaken from his purpose.

(22) Where he holds no other gain greater than that which he has gained, and where, securely seated, he is not shaken by any calamity however great---

....(I skipped the commentary here)…….

(23) That state should be known as yoga (union with the Supreme), the disunion from all union with pain. This yoga must one practice with firm resolve and unwearying zeal.

Thank you, Zakir and friends, for a beautiful experience.

Best Dressed at the Academy Awards

2010-03-08T06:38:00.004+05:30

So who's up for an award and for what? I do suspect Avatar will win something. In the meantime, I'm easily amused by the photographs of the best "?" dressed on the red carpet. If it wasn't for YAHOO making me go through three separate steps to get to my actual email, I probably wouldn't have known that today was the Academy Awards. In fact, I suppose I should be grateful for YAHOO "news" or I'd unlikely never know anything in any kind of timely manner so far as world events and news. If it doesn't appear as a YAHOO headline, on FRONTLINE or on a Rachel Maddow show, then it's probably not in my radar.

I know. I used to listen to BBC every now and again. Occasionally I get on BBC kick and listen daily. Generally, I find most of what we consider "news" these days so depressing that I actively chose to keep my knowledge limited to YAHOO headlines and Rachel Maddow. I'm certainly not recommending this policy to anybody. For the record, I do actively watch loads of news before elections and before I vote. At least I can say that I try my best to be an educated voter.

....back to the Academy Awards.....can you imagine the meters of taffeta, sequins and glitter used on all those dresses? I always wonder if the dresses are made locally or by semi-slave labor so that our movie stars can glide down the red carpet for all of one minute per year. As I find myself thinking how uncomfortable most of those dresses look, especially for sitting through a long Academy Awards program, I also wonder what I would wear if I were ever invited to attend the event. Of course, I'm certainly not a movie star (yet anyway...I keep waiting to be discovered!) so whether my outfit would make YAHOO news or not might be in question. But my answer is clear: I would want to wear something locally-made and produced, preferably organic and comfortable. If we could make it stylish and even a bit funky, all the better. Of course, I also realize that this is mostly how I chose to dress anyway in my daily life. So I guess I'm not that far from my fantasy lifestyle. Making conscious decisions about how I live, what I wear and the impact on the world is part of my daily yogic analysis of where I'm at and what I'm doing and how I'm doing it.

However, I do have to admit that Sandra's dress is pretty darn amazing.......

Bugs and the Vegetarian Question

2010-03-03T02:09:00.006+05:30

Apparently, I've got them. My digestion hasn't exactly been the same since I went to India so I sent a hair sample to a reputed miracle doctor. He sent me back the test results: bugs of all kinds. I've got mold, L-form bacteria, bad bacteria of various kinds, Candida and ringworms. Yuck. I'm a chemical mess.

As part of the overall regimen, the miracle doctor recommended a new diet: low to no carbohydrates, no sugar, no vinegar, no dairy, no soy, no miso. This pretty much eliminates all of the joy in food for me, leaving mostly green vegetables and meat as my only option.

Since I left my parents house I've been some version of vegetarian for the past twenty years. But really, I think that I was probably born one. At age seven on my father's farm in Montana, I realized that we were eating Bessie the cow for dinner. I quite frankly preferred Bessie alive and went on a meat strike to the joy of the dogs who waited anxiously under the table for the meat portion of my dinner when my parents weren't watching. I never really liked the stuff after that.

Once I started a yoga practice in my twenties, the philosophy of yogic eating fit my eating style perfectly. I already understood the concept of Ahimsa (non-violence towards other beings or ourselves) with regards to the belated Bessie. There was nothing for me to give up.

Over the years I've experimented with different diets of all kinds: raw foods (no meat or cooked anything), vegan (no any products of any kind including eggs and dairy) , lacto-vegetarian (no meat or eggs, but dairy products are ok), ovo-vegetarian (no meat or dairy products. but eggs are ok), lacto-ovo vegetarian ( no meat, but eggs and dairy are ok), the anti-Candida and more recently Pescatarian (vegetarian plus fish). I tried each diet for long periods of time....often a year or longer. I do admit that the raw foods diet only lasted a month or two: New Mexico is an awfully cold environment for eating raw foods all the time. Yet still, after all of my education, efforts and determination to get my system right....I've failed. I've got bugs, darn it.

Now, twenty years later, several doctors of all types, including the current magic man, have suggested that I venture into the realm of true non-vegetarianism. They've suggested chicken, turkey, wild game, grass-fed beef and pork. Secure in my deeply held love for animals of all kinds, I've ignored all the advise--until now.

As I am learning to pause in order to see more clearly all aspects of my life, for the first time in a long time, I'm questioning some of my deeply held beliefs. I have several older yoga friends, who were once vegetarians, who gave it up saying they feel better. They look pretty good. I have several yoga friends who are not vegetarian. They also look pretty good. I also have several vegetarian friends, including raw foods enthusiasts, who also look pretty good. But if I'm really honest with myself, as we age the non-vegetarians are looking better than the vegetarians. This is my opinion based upon the people that I know. It may be a slanted survey and believe me, I'm not thrilled with the results.

That said, I believe that yoga is all about internal awareness and consciousness and that there are no black and right rules. Life is a flow, a journey and an experiment. We have to try new things. One day about a year and a half ago, I woke up dreaming about eating salmon. I put on a nice dress and took myself to the fancy Georgia O'Keefe Cafe for a wonderful salmon lunch. If the body craves something, especially in the realm of whole foods, I think that we ought to oblige it. This was the beginning of my Pescatarian diet.

While I can't exactly say that my body craves any of the recommended suggestions nor am I ready to sit in front of a big steak and eat it, I can say that the first chicken broth I made didn't taste too bad. I used tons of green vegetables to mask the flavor.

So I guess I am now a “Flexitarian," a recently coined term describing those of us who eat a mostly vegetarian diet, but occasionally eat meat or in my case, meat broth. I like the term “Flexitarian”. The word itself even has a pop culture yogic ring to it. In my dictionary, I think I’d like to define it as:

Flexitarian (noun)—A person who sees reality clearly and adjusts himself or herself accordingly.

Or maybe we already have a word for it: Yogi.

“Killing and eating meat are interrelated, so do we have to give up eating animal products? I myself once tried to give it up, but health problems arose and two years later my doctors advised me to again use meat in my diet. If there are people who can give up eating meat, we can only rejoice in their noble efforts. In any case, at least we should try to lessen our intake of meat and not eat it anywhere where it is in scarce supply and our consumption of it would cause added slaughter.”

-- His Holiness the Dalai Lama from The Path to Enlightenment, published by Snow Lion Publications