Apples pls

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

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

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

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

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..

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

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

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

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

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

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?

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

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

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

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.