Coltsfoot day!! (Had to go back six years to get a spring this early!)

Monday, March 13, 2006

Ah, Spring, the first girl. . . .

Today, I saw my first Coltsfoot.






Later, it will look like this.

Monsters of War

gunpowder and dynamite

trigger finger itch

dead child dead

dead child crying

to ears that no longer hear

any but voices that never leave the head

By Phil Specht on Mar 11, 2012

NASA



Moonlit Aurora Borealis



amniotic sky

reflections of a lost twin

ever circling

tide or maternal heartbeat

as the seas rise and fall

to your memory

when you too, alive

shared water ...

water to put out the prairie fire

in the northern sky



By Phil Specht on Mar 11, 2012

Saturday, March 10, 2012 5:28 PM, EST

Still no word on next steps.

But...Ally lost her first tooth today!

Daylight Saving Time begins Sunday, March 11, 2012 at 2:00am

Ric Ergenbright

girlnomad Ukraine

Thursday, March 1, 2012 1:17 PM, EST

Ally is HAMA positive. This is a bit disappointing, as we are pretty sure this was her last chance for a final dose of 3f8. There is a little confusion about the actual end date of the protocol, so we have a call/e-mail in to the NYC doctors. Hopefully we will know by tomorrow.
Regardless, we are not sure what our next steps will be. At some point NYC wants us to come back so they can do their post 3f8 workup on her. This would involve a set of scans, blood tests and various other procedures, to see how her body is functioning, after 4 years of cancer treatment....a bit daunting to think about!

Other than that, we have already been out in the snow once today, with plans to play/shovel again. It is nice to finally have snow on the ground!

Everyone is healthy again. The antibiotics have really helped Ally's hearing! This is great, I was getting tired of talking loudly and repeating myself.

As soon as I know what our next steps are I will let you know!

Ralfo

from auntie listener. . . .

Just had to tell you that Ally is feeling good again!

And so are her Mom & Dad. :-D

Tsunami and the Genealogy of Morality



Listen.



Grass in the place now devoid of God.

Leaves of rustling grass voices of lesser deaths

millions strong leaves of grass.



The Old Order too, shaman, priest

summon sun, rain, son, reign

lesser deaths, sacrifice, wafer, grain.



Why insist on hearing noise as Voice?

wind chimes tinkle and the waves lap, lap, lap, lap

Lion's tongue waiting for the gazelle to thirst too.



More than voices the gods in our heads, visions too

infant mind, fertility goddess turned clay object toy

bountiful crop prayer to mother earth.



Men offered forbidden fruit leaving garden

Bellow of legions charging the front.

Voices in the head bicameral myths.



Ocean on land.



Discourse lost to the wind, the waves, to predator lurking.

Old wisdom lost with God.

Had we heard the leaves rustle, the lapping, would we turn

to plant the spear, to run when the ocean recedes?



By Phil Specht on Feb 27, 2012

Sunday, February 26, 2012 12:08 PM, EST

So....I brought Ally to the doctor this morning...double ear infection; we took the antibiotics this time. While we were there a student nurse was working, the doctor asked if we would mind if the student really looked Ally over, as she is a very special patient. We did not mind at all...it was nice to provide a learning opportunity. Ally was a very good patient. She hates the antibiotics...just like I did when I was little.

Daddy is 100% better.

Today is the first day where I can really eat real food!

Thanks for thinking of us. I'll let you know about HAMA later in the week.

Friday, February 24, 2012 7:10 PM, EST

On Wednesday we drew Ally's last HAMA sample. We will find out next Wednesday what the results are. We are hoping to get one more 3f8 treatment in before Ally's protocol runs out.

Ally has been fighting an ear infection for a couple of weeks. She will have a few really good days, then slide back. Her hearing is being effected, and she is down to 26 and a half pounds. Grrrr.

On Tuesday I was diagnosed with a sinus infection, and then on Thursday I am pretty sure I had the norovirus...good news, I think the norovirus wiped out the sinus infection!

Right now daddy is sleeping off a fever.

Our biggest fear at the moment is that Ally will get one of these and then we will have to go to the hospital. I could

afford to lose the 8 pounds of water weight on Thursday, but Ally can't.

I'll keep you updated about the current health situation, and about HAMA results. Please keep Ally in your prayers to keep these "everyday" sicknesses at bay.

T S Eliot. . . . Ash Wednesday As a Word Cloud

Laissez les bons temps rouler!!

shadow1096

Earth Physics and Valentines

in this space and time

molten rock turning inside out

once again

surface blue and white and brown

and green

turning, turning

alive

and circling above our twin

light of the night in the black space

while distant solids and liquids and gases

obey too this space and time

here alive, there in the cold void not

yet in the void that is now

futures are finished and the past is yet to be born

possibilities appear

anything is possible

anything

and you join me

heat for the cold void

life

light converted to heat

by your touch

Phil Specht on Feb 20, 2012

♥

♥

Bluesmaster

airship29

TEAM VERMONT BRINGS HOME NUMBER ONE!

INNER PEACE

Ralfo

Not only a heart, but a whistlepig!

HAPPY WHISTLEPIG DAY!!

Welcome to the Month With a Heart in the Middle!

♥

In *my* book, Spring has arrived. . . .

Made me cry. . . .

Monday, January 30, 2012 6:58 PM, EST

On February 19, 2009 Ally's prognosis changed. We had just come off 3 months of remission and were feeling good. Her scan that day showed the tumor was back. It was heartbreaking. The very next day we met with her oncologist and made a plan. The plan really did not include Ally having a 5th birthday...

I am so glad that plan was not the final outcome. We had the wonderful opportunity to seek treatment and surgery in NYC; with the blessing of our home hospital (which I am told is not common). We feel so lucky that we only need to travel to New York to get some of the best cancer treatment for Neuroblastoma in the world. Even though the road is a bit bumpy down there, Ally celebrated her 5th birthday today, so who cares about a few bumps in the road? She is worth every tear that has been shed, every long trip to a hospital, and every doctor's appointment she has required. She is such a good girl. She is (almost) always well behaved. She always does what the doctors say. She always has a smile on her face. She is the bravest person I know.

So, here is to Ally, who was determined to have a 5th birthday, no matter what that stupid tumor thought. And, here is to Ally having so many more birthdays.

She is the light of our lives and we feel so lucky to be her parents, we are so happy she picked us!

Happy Birthday Ally...and many more to come!!!

ChildofGOD777

Friday, January 27, 2012 5:40 PM, EST

Here is a picture of Ally and her buddy Max playing "nap time".

Ally turns 5 on Monday!!!!

I've always thought that dialup was a kind of meditation (waiting for pages to load)

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mactoot

Bluestar

Made it a good hour before midnight! Thank you all -- you're the very best!!

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WooHoo!

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Gaining: last time I looked, 99,996!!

Happy Year of the Dragon!!

X-posted in my Achalasia Support Group

--- In achalasia@yahoogroups.com, K wrote:

I'm with you here - salad without lettuce and sandwich without bread! I get very odd looks also!

K [. . .]

K: Too funny! Years ago, I realized I was (and am) basically allergic to carbohydrates, and became an Atkins girl. I've been asking for bacon cheeseburgers without a bun in restaurants for more than thirty years, lol! Before that, I realized I'm not really a drinker (I did and do still occasionally, but somehow would rather spend my calories elsewhere unless I *want* to get drunk, and never needed to more than once or twice a year), so used to get a cup of coffee from the kitchen just to have something in my hand at a cocktail party (otherwise helperbees bug you to death with, "Can I get you something?" -- Prolly, a glass of ginger ale would have worked as well). Guess what I'm saying is that for most of my adult life I've been ready, willing and able to walk my own path foodwise and accept that it made me "odd." Perhaps the difference is that *that* was my choice; the food "rationing" with Achalasia is not, and I find myself getting pretty pissy at times about the additional changes I've had to make because of it.

Irony, is that these past six months in trying to adjust to it, the lo-carb way of life I adapted to so many years ago, and so well (I can make low carb waffles!) has fallen through that giant hole of starvation avoidance! Virtually everything I CAN eat now is close to total carb! And it shows (thank goodness, for the time being), in the four weeks since the Heller, I've gained five pounds! I need to stop now. Now! I didn't ask for the weight loss, but it has been very good for my walking, breathing, hip and knee joints, and I'd HATE to lose that. So last night, was trying to figure out how to get back to low carb. . . . I can pretty much keep my odd little salads, because there's not much carb in lettuce. But a good many things that were/are staples, I'm currently unable to eat -- bacon cheeseburgers (with or without buns), roast beef, steak, roast pork, pork chops, tuna fish, kippered herring, I can't have, while what I CAN eat: potatoes, sweet potatoes, crackers of any kind, toast, ice cream are death to a low carb life. (Well not exactly true, I've learned how to make low carb crackers, biscuits, and a kind of flat bread)(but no more store boughten ones, lol!) I feel like one of those lab rats that has to learn a new maze to run perfectly to get fed. ACK!!

Food habits tend to be pretty rigid for the human race: most of our foreign food restaurants in this country were started by immigrants who needed food to taste *right* to them, and were intended to provide a place to eat for other immigrants. We're a bit luckier: we've adopted a lot of "foreign" cuisine as our own (at least on occasion: Chinese, Sushi, Italian, Mexican, Greek, Middle Eastern, even African. I guess I'll have to thank my mother, may she rest peacefully, for pushing us to try new things. We certainly ate from a much broader spectrum of food and food styles than anyone I knew when I was growing up in the forties and fifties in the Inter-Mountain West. And no fussing tolerated: with nine kids, no special orders available. Artichokes and avocados, mung bean thread, Cuttlefish, tongue, calf brains. . . . regular little gourmands we were, grin. But all in all it prolly makes it easier for me to adapt my eating habits than most.

I recall reading a few years back that a mid-Western/Heartland nursing home, in an effort to provide healthier food for its residents hired a really good chef. . . . And the residents went on strike!! They WANTED meatloaf and mashed potatoes with greasy gravy and mac and cheese, and grilled cheese sammiches, the hell with pâté de foie gras, and beef stroganoff!

Live long and prosper kiddles!

Julie in the Wilds of Wonderful West Virginia!

montanajim

montanajim

Timber Cruising

Online, the assessor tax parcels divide crop and timberland
and both rest beneath snow that finally comes,
the hawk hunting pasture bemoans hidden vole
cannot rest watchful eye
for winter brings hunger to many and the tax man waits
so buyer and I cruise the timber looking for lumber trees.

Looking now satellite image so clear, there the veneer tree
red elm dead and leaning towards; "best take it now" the biased advice
while anyone can see twenty years of prime lie ahead
(or twenty years from now a nursing home bill due instead of taxes)
if dead tree felled with wedge and line instead.

That lucky 1% growing straight and strong thinking their doing giving un-interrupted sun.

The 99% scratching and clawing to get a share, sending a wayward,reaching branch.
A lumber tree.

The timber buyer's critical eye needing a kant straight enough to saw
two faces clear enough so those edge trees beckon us inbetween.
not knowing the sun enriched growth has sealed their fate
for neither veneer nor scrub they will suffice.

At end lumber trees there are aplenty.99% of trees can be sacrificed.
Can of spray paint. Can of pepper spray.
The trees know now which side I'm on, which master I serve
Money for the tax man, for the man
as the county distributes food at the pantry
and we all look for the sun to return, hawk eyed.

Phil Specht on Jan 15, 2012

Thank you, Martin.

So, today is Martin's birthday. And I'm glad this country acknowledges it.

But his birthday always brings to mind so clearly to me the first week that he wasn't. It was beautiful weather in D.C. that week. There was a Forsythia in bloom at my back door, and I spent the whole week digging it out, to replace it with a Mock Orange. I had a radio on the porch listening to the news of the riots as I sweated, disentangling the Forsythia's roots from around the construction junk the builders had buried next to the house.

My neighbor across the street with her doors locked was calling frequently, convinced that the rioters were headed our way. (Right, all the women in the neighborhood had to drive to the bus stop to pick up their maids ~~ was she expecting them to take taxis out from DeeCee just to get our little chicken sh!t ghetto?)

As I sweated, dug and pulled, and the sky was blue and beautiful, and 7th street burned and burned, I recall feeling so hopeful. At last they were angry, and standing up!

When I first came East, I worked in the personnel records dept of Hot Shoppes/Marriott. We had thousands of employees in D.C. mostly cooks, busboys, dishwashers. They bought furniture on credit from the stores on 7th Street. Whole house suites. The terms were very easy, the furniture crappy. But the monthly payments were possible even on a busboy's salary. The interest, outrageous, but at least you had a couch to sit on, a table to eat on, and a bed to sleep on -- for a year or two, until it fell apart. Then generally, they stopped paying. And went down the street to buy another set from another store. The owners didn't much care, D.C. had a really good garnishee law. The buyers were sometimes paying for two or three deceased suites as well as the currently useable one. Every time I'd filed another garnisheeing notice, I'd felt outraged. They were paying double or triple what the junk was worth in the first place. And yet I could see no way out for them, then. No one else would give them credit. They were doing what they could. But if I were angry, just standing helplessly by, how much more angry must they be?

And now, 7th Street was being burned! One could see the smoke from the burning city even from Maryland.

I pulled several bushels of construction junk from that hole, and dragged it to the curb. I planted the Mock Orange with much new dirt, and manure, and hope. And it flourished. And I always think of that week as the beginning, though I know it began earlier, with a man who would not have approved of the riots, but who had given the heart and the hope into the making of them and heart and hope did not end when he did. . . .

Thank you Martin.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This is a repost of a blog I posted on the Howard Dean blog in 2005

katy99780

OH, JOY!!!

Friday, January 13, 2012 7:25 AM, EST


I just got a call this morning.
Ally's bone marrows are clear!

Written for my Achalsia Support Group. . . .

Yup. No dang guarantees. But then there never are any, really, for all we act like there are, grin. We marry in the face of terrible odds, believing that *our* love will make it. . . . And miracle of miracles, it often does. We have children, and hope and pray they'll be fine at birth, and mostly they are. We build houses and pour our hearts into making them homes, praying all the while that hurricanes, typhoons and earthquakes will pass us by, and they do for the most part. Living seems to be more of an art than a science. . . .

But for the fact-loving: N. dug these up a while ago, and says it so well, I'll let him speak for himself: http://health.groups.yahoo.com/group/achalasia/message/59703

Needless to say if the odds on a lottery were anywhere as near as good, I'd be taking out second mortgage on my farm to buy tickets!

And here's a scrap of poetry that always works as HeartsEase for me:

“Failing to fetch me at first, keep encouraged. Missing me one place, search another. I stop somewhere waiting for you.”
― Walt Whitman

xox
Julie, West Virginia!

leddyed

Tuesday, January 10, 2012 8:40 AM, EST

Ally's bone marrow samples went well yesterday. She has had them so often that the amount of scar tissue at the sites has been a problem the last few times. Yesterday there was no problem!


The meeting with the Endocrinologist was interesting. Our plan is to keep track of her blood sugar for a while and see what that data gets us.


As soon as I know about bone marrow results I will let you know.

Eating is so much more than nourishment in this culture (and every culture, as far as I'm able to determine). I think historically over thousands of years it's always been a huge uncertainty whether or not there will ever be a *next* meal, that we've developed our major celebratory behavior around food. To be ousted from that takes a bigger toll on the soul than one might have expected. . . . To rejoin the fellowship, a greater gift than one knew. . . .

Friday, January 6, 2012 6:55 PM, EST


Clear Scans!!!

Ally's CT and MIBG are clear! We are still scheduled to pull bone marrows on Monday. We should have those results sometime next week.

On top of clear scans we can also celebrate how awesome Ally behaved. Yesterday was her CT scan. If you have never had one, google it, so you can see the huge machine Ally goes into. It is loud as well. She was very calm, and held her breath when they told her too. The nurse said the images were great, and that Ally did a fantastic job. We were under the impression that today's scan would be about 45 minutes to an hour, as that is how long they tell us it takes when she is under sedation. In actuality it was two, 5 minute scans. Even with the shorter time, we are still very proud of Ally, for laying so still. She stayed very still and the images were clear. She still had to do the day of no eating, just in case she freaked out and needed anesthesia. She didn't need it, didn't complain about being hungry, and got a nice Olive Garden reward! She is our rock-star. What a great way to begin 2012! Thanks for all of your thoughts and prayers these past two days, keep them coming for clear bone marrows!

Wednesday, January 4, 2012 10:31 AM, EST

Ally is HAMA positive. We will draw blood again in a month.

There has also been another change in her schedule. Ally can't have bone marrows pulled on Friday, because they need to be shipped overnight to MSKCC. So, Ally will do the MIBG scan awake (45-60 minutes) on Friday and we will head up to the hospital early and have bone marrows pulled at 9:30 or 10:30 on Monday, before her other appointment. Tomorrow her CT schedule will remain the same.

Monday, January 2, 2012 4:52 PM, EST

Ally's scans have been changed to Thursday and Friday of this week. With today being a holiday, nuclear medicine could not get Ally's injection for tomorrow, so a last minute change was made. Ally will have her CT scan on Thursday, followed by her MIBG injection. On Friday Ally will have her MIBG scan and Bone Marrows. The original plan was to try the MIBG awake, but through good scheduling Ally can be sedated (it is a 45-60 minute scan where she needs to be still).

We will find out results by Monday. Also on Monday we are headed back up to DHMC for an endocrinologist appointment.

Oh yeah, on Wednesday we will get HAMA results too!

Please keep Ally in your thoughts this week.

Going to be a sweet warm first day. And Firstday. Had this wonderful dinner planned for last night, but the timing was off: I was too full already, at the wrong place in the meds cycle (you're not wanting to take fast acting pain meds on a full tummy), so had cheese and crackers instead (understand, cheese and crackers is a REAL treat!). So instead, rescheduled, and am having it for breakfast:

Chilled pate of turkey with seasoned salt and pepper
Candied yams, hot
Cheesy garlicky hot buttered spicy smashed potatoes
Cold cramberry sauce

What a lovely way to usher in the Year of Good Eating. . . .

Life's looking up.

The Feast

of

Aunt Clara




♥

Monday, December 26, 2011 1:18 PM, EST

We had a great Christmas! Ally got everything she asked for and more. She is very easy to spoil! We had a fabulous brunch with both sides of the family. Ally's most favorite present was the bounce house Santa brought! It is small enough to fit in her playroom, and big enough to do jumps, flips and rolls. We are looking forwards to lots of playing with friends this week.

Ally has a blood draw (HAMA) this Thursday. We will have results on January 4th.

On January 3rd Ally has a CT scan. We think she also has an MIBG and bone marrow pull that week, but we have not received the schedule yet.

Happy New Year! We can only hope that 2012 is as happy and healthy as 2011 was!

Hopefully, soon to simply be a bad memory. . . .

Swallowing

The GOOD swallow -- you just swallow, it's easy and whatever you just swallowed goes down, and seems to stay down

Problematical swallow -- you *can* swallow, but it's unpleasant: a sense that a hand is grabbing at your throat, and squeezing. Generally, you get a fairly quick return.

The BAD swallow -- you don't. You try to force it, and it hurts, and stuff squirts with a fair amount of force back into your mouth and possibly into your nasal cavities, too. Nothing goes down.

The don't even try: sense of backed-upness from the xiphoid process to pharynx. Only an idiot would even attempt a swallow right now. (Problem here is, that if you are starving and dehydrated, you ARE going to try. . . .)

Panic time. . . .

Three days ago, esophagus pretty much shut down for 36 hours. Eating was pointless, though I kept trying. Virtually everything came up. Understand: coming back up does *not* equal vomiting. To vomit, it actually has to get into the stomach. This was not.

Net result, dehydration. Dehydration means messed up electrolytes. Messed up electrolytes means, among other things, dizziness and cramping. That pretty much describes midnight to morning.

First: calcium. Nothing. . .
Then: magnesium. Nothing. . .
Finally: potassium. It worked. . .

Thankfully, my early warning system is working. But I 'spect only since I'm already so out of whack. Have I mentioned that I'm *tired* of being out of whack?

Was contemplating my 60 pound weight loss between June and the end of September/Emergency Room. A calorie deficit of 210,000 calories. A 1,750 deficit every day for 120 days. (At 150 pounds, your body at rest needs 1800 calories per day.) I wonder if one single soul, medical or otherwise, has surmised what this might mean to an actual life. . . .

This is from my support group. Sobering to consider that one has an orphan disease. . . .

FDA Rare Disease Patient Advocacy Day

Please plan to join this webcast or visit in person. Ask your doctors to
attend on behalf of the multitudes who have Achalasia. If any of you can attend,
and speak this would be wonderful. See the links below to register and get
more information


FDA Rare Disease Patient Advocacy Day

http://tinyurl.com/4wygaab
http://tinyurl.com/6m22as2

The Food and Drug Administration's (FDA) Office of Orphan Products
Development is announcing the following meeting: FDA Rare Disease
Patient Advocacy Day. This meeting is intended to enhance the awareness
of the rare disease community as to FDA's roles
and responsibilities in the development of products (drugs, biological
products, and devices) intended for the diagnosis, prevention, and/or
treatment of rare diseases or conditions. The goal of this meeting is to engage
and educate the rare disease community on the FDA regulatory processes.

This educational meeting will consist of a live and interactive simultaneous
Web cast of presentations provided by FDA experts from various Centers
and Offices, as well as from outside experts. The interactive meeting
will include two general panel discussion sessions, as well as afternoon
breakout sessions for more in depth information on the roles of FDA. In
addition, on site attendees will have an opportunity during lunch to
engage with FDA and outside experts in a small group setting.





For more information please visit: FDA Rare Disease Patient Advocacy Day

WINTER SOLSTICE, December 22, 12:30 A.M. EST

The light is BACK!!

Again.

Monday, December 19, 2011 11:20 AM, EST


I have had many requests to know what Ally asked Santa for. Here is her list:


Jewelry Box


Ballerina Slippers


Cinderella Dress


I have it on good authority that Santa will deliver these gifts (and maybe even a couple more!)


Merry Christmas!!!

An antireflux procedure was performed to prevent postoperative reflux. A posterior (Toupet) hemifundoplication was used in patients with a modestly dilated esophagus. And anterior (Dor) fundoplication was used with the most dilated esophagi, because a posterior fundoplication appeared to cause a relative outlet obstruction by excessively angling the gastroesophageal junction anteriorly.

https://docs.google.com/viewer?a=v&q=cache:nLWnaPX_gogJ:www.ncbi.nlm.nih.gov/pmc/articles/PMC1190864/pdf/annsurg00028-0035.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESgscqYC5vVocKrloHq1FxfFGr1BkvqYtoNYfx77PBoQByi2s8f7hESZHAJfcAjcEhFkz6JMUyxIA3bBd8_B8JaS_Ml14ufBMCrGgaYnahKd0jWkP81kCDDI1zIYcXms0pHa_iIR&sig=AHIEtbTFcw90SDV4ndN0wvmpA49mbckskA

I'm betting on the Toupet. My esophagus was hardly dilated at all in barium swallow.

Sunday, December 18, 2011 8:33 AM, EST

For those of you who have met Ally, you will know the significance of this statement:

Ally sat on Santa's lap yesterday!!!

Ally is exceptionally shy. We have seen Santa around this holiday season, but Ally is content to look on from afar. Yesterday, at the New Hampshire Childhood Cancer Lifeline Party, Santa showed up. He had a wonderful Sleeping Beauty doll for her. When he was finished passing out the gifts he asked if anyone wanted to come up and sit on his lap. We ALWAYS ask Ally if she wants to do something, and usually she says no, but we always want to give her the opportunity. She immediately stood up and was ready to go. Ally patiently waited for the little girl in front of us in line, then walked right over to Santa and turned around so he could pick her up. I did have to hold her hand the whole time, but she spit out the 3 things in her list as quickly as I have ever heard her speak, and then hopped down. It was hilarious! We were so proud of her.

Merry Christmas!

Vaclav Havel 1936 - 2011

Poets are the hierophants of an unapprehended inspiration; the mirrors of the gigantic shadows which futurity casts upon the present; the words which express what they understand not; the trumpets which sing to battle, and feel not what they inspire; the influence which is moved not, but moves. Poets are the unacknowledged legislators of the world.

Percy Bysshe Shelley

O frabjous day! Callooh! Callay!

Surgery on December 27 at UVA Hospital, Charlottesville, Virginia. What a *great* Christmas present, lol! And the surgery is? A Heller myotomy with either a Dor wrap, or a Toupet (he wants to decide *while* he's in there, depending on what he's seeing). (I like that! -- It means he knows what he's seeing. . . . ) Expected duration: two hours; expected hospital stay: day or two, depending on how quickly I can swallow again. Then two weeks recovery, at minimum, then we'll see.

Did I mention that I'm pretty happy about finally getting someone to actually MOVE. . . .

Saturday, December 10, 2011 1:32 PM, EST

So it seems Ally's HAMA was not as low as we first thought, or it has gone up. Anyway, she is HAMA positive and we are going to test again on December 29. We will know results on January 4. If she is negative we are tentatively set to be in NYC for the week of January 9th.

In the meantime we have been enjoying some fantastic Christmas activities. Last weekend we attended the Make-A-Wish Christmas Party (which Ally loved!). We have decorated the house, put up our Christmas tree, visited the "Gift of Lights" at the Loudon Racetrack and made come crafts. Next weekend we have another Christmas party being put on by New Hampshire Childhood Cancer Lifeline.

I will update again when we have more Christmas news to share.

What a wonderful play pen we have been given. . . .

Hq Villa Hostel

Trapping the Moon...

An altogether lovely breakfast salad:

(machine) minced broccoli, green olives
fresh homemade buttermilk cheese
dab of mayonnaise

with a side of fresh tomato slushee

Life is good. . . .

Wrote this for my Achalsia support group

Last June, when the active phase of this "condition" stepped up exponentially, and I hit the internets again (had been researching all along, and had settled on "esophageal dysmotility" as a working definition), and realized that the long term outlook wasn't all that fine, I remember one night thinking: Well, maybe a feeding tube ISN'T all that bad. . . .

Aside from the fact that I smoke -- or maybe because of it -- I've otherwise always been a "health nut." My mother was a researcher/actor too: she learned how to cure my dad's migraines with grapefruit juice (vitamin C), so I come by it honorably. At any rate, since I too have migraines, and smoking about halves your Vitamin C, I've for long been a big fan of extra C. Many of the alternative meds I came across for achalasia (B complex, L-arginine) were things I've taken on and off for years, for other reasons. Being a low energy type, I've taken B-150 for years; and L-Arg for BP. In that context they both *helped*. Found one of the other achalasia self-help sites last year, and restarted the B-100. It helped. Restarted the L-Arg after the doctors kept trying to prescribe CCBs. It helps.

As do Hawthorne, magnesium, Co-Q10, Vitamin C. As do nicotine, caffeine, butter, tomatoes, lemonade, chocolate. . . I quit smoking for five days in the hospital (involuntary), and voluntarily for four days two weeks later -- in the hospital while being IV fed, it wasn't that hard. At home, in four days, the esophagus/LES just shut down, period: I lost seven of my hard-won pounds in those four days, and could feel the dehydration raising its ugly head again. I restarted. The effect was *immediate*. . . .

Never been an enemy of chocolate, nor that much of a fan. Last year, I suddenly started *longing* for it. . . . I watched that longing somewhat bemused, but there it was, and I indulged it. More interesting, and flummoxing to me was in June and the sudden HUGE desire for Mountain Dew. I've *never* been a pop person. And suddenly I was going through two 12 packs in a couple of days. About that time, I suddenly NEEDED bananas, which I hadn't bought for decades. And lemonade, which I was even making at home. Mountain Dew? Co2/caffeine: relaxes LES. Chocolate? Relaxes LES. Lemonade? Acid, relaxes LES. Bananas? Potassium which was low, and getting lower as I lived more and more dehydrated.

Mind you, NONE of this was being done because I was attempting to mitigate or ameliorate the achalasia, which I had in fact *discarded* as a diagnosis. (Imagine my surprise seeing that bird's beak on the barium swallow!) This was simple body-wisdom.

But the truth of it is, that as hard as my body was/is working, it is NOT enough on its own. Even IF it were to get no worse, I am unwilling to continue to live like this. Food is nice, but I am totally unwilling for it to become my only occupation for the rest of my life. And, too, I'm cheap: I HATE paying for and tossing most of what I've paid for. Makes me furious, lol!

But the fact is -- those cells are going to continue to die. Not one thing I can put into my mouth, nor medicine, standard or alternative, is going to change that. Reiki, acupuncture, massage, *nothing* is going to get those dead nerves to wake up and smell the NO.

THEREFORE, I very glad for the medical profession, and the state of the art as it is today. Sobering to consider that in my one little lifetime, I've had two auto-immune diseases, *both* of which would have killed me 100 years ago. (The other was Graves Disease.)

Guess I'm just trying to say, especially to the noobs who are pretty much in denial, that alternative medicine can *help*. . . . what it can't do is CURE. Nor, for all that, can the wonderful surgeons of our lives. . . . They can do a better job, make this damned condition at least livable. But that's all.

Part two of this rant is shorter. While searching for something/someway/somehow to eat enough to keep from starving (post hospitalization), and remembering my sense that maybe a tube wouldn't be so bad, I stumbled across a number of websites for people who have NO choice: Head/neck/mouth/tongue/pharyngeal cancer survivors, ALS, a guy in Australia who has scleroderma. The guy in Australia cooks for his feeding tube (and uses a top of the line blender). He says he's been doing much better after he got off of the canned formulas for his tube. And he at least can enjoy the process and smell of the cooking food.

And I just need to say: WE really don't have it all that bad. Really.

Another one of Unca Logan

Quiet day, yesterday. Mostly doing some followup (well, a LOT) on the new ancestress my sister discovered. She's been sort of an icon in the family (the Indian Grandmother), never identified by name before. Evidently my mom told one of my brothers that we had an Indian Princess in our background. Well if being the daughter of a very important chief makes you a Princess, then yup.

Interestingly, he *wasn't* Native. He was born in Montreal, and captured by the Oneida as a child, and just stayed with them. He married a Cayuga woman, and became the Iroquois "governor" in PA. He named (last name) at least three of his children after the Quaker "governor" that he dealt with -- Logan. My GGGG Grandmother, Ann Shikellamy Logan married a Colonel John Gibson. Her brother, James Logan became a war chief in the Mingos and a great peace leader, until his family, including my grandmother was killed and scalped (by white men) at the Yellow Creek Massacre. Which was in WV.


The only survivor of that Massacre was my GGG Grandmother, Polly Gibson. Interestingly, her father, Col. John Gibson, had been captured by Indians as a teenager, and adopted, and so survived. . . .

Logan's Lament. . . .
"I appeal to any white man to say, if ever he entered Logan's cabin hungry, and he gave him not meat: if ever he came cold and naked, and he cloathed him not. During the course of the last long and bloody war Logan remained idle in his cabin, an advocate for peace. Such was my love for the whites, that my countrymen pointed as they passed, and said, `Logan is the friend of white man.' l had even thought to have lived with you, but for the injuries of one man. Colonel Cresap, the last spring, in cold blood, and unprovoked, murdered all the relations of Logan, not even sparing my women and children. There runs not a drop of my blood in the veins of any living creature. This called on me for revenge. I have sought it: I have killed many: I have fully glutted my vengeance: for my country I rejoice at the beams of peace. But do not harbour a thought that mine is the joy of fear. Logan never felt fear. He will not turn on his heel to save his life. Who is there to mourn for Logan?--Not one."



Got a picture of my GGGGG Grandfather, Shikellamy:

Looking mighty dark for a Frenchman, lol! And a pic of a bronze statue.

And Chief Logan. my GGGG Uncle:

Never been related before to peeps as had statues made of 'em. . . .

"AIDS Ribbon Chair," 2000
Michael Ransom
carved wood with paint, 4.5" x 4" x 4"