Saturday, December 31, 2011
Monday, December 26, 2011
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. . . .)
Saturday, December 24, 2011
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. . . .
Thursday, December 22, 2011
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
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
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
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
Tuesday, December 20, 2011
Monday, December 19, 2011
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:
I'm betting on the Toupet. My esophagus was hardly dilated at all in barium swallow.
Sunday, December 18, 2011
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!
Friday, December 16, 2011
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. . . .
Wednesday, December 14, 2011
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.
Saturday, December 10, 2011
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. . . .
Friday, December 09, 2011
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 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.
Monday, December 05, 2011
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:
Thursday, December 01, 2011
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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