Thursday, December 28, 2006
[Later edit - I just found out there's apparently a travel plan named "Velocity". This entry has nothing whatsoever to do with that.]
I just spent almost five hours trying to book a round-trip flight, hotel, and car for a visit to Florida in late January. I usually book everything separately, because I've found flights are usually cheaper booked directly through the airline web site than through any of those services, and the particular hotel I want usually isn't available in packages anyway. But I'm not above using Travelocity or whatever to do the searches.
Well, this time, it happened that I could get the hotel I wanted and a car in a package with the flight, and the total was in fact lower than booked separately (even though the flight was more expensive), so I went went ahead and booked the flight, hotel, and car on Travelocity.
Screen after screen after screen of nit-picking and verifying and detailing and registering and TOS to be read. Finally I got past the credit card verification screen, and got a screen that's blank except for where it says that my reservation is not yet complete because Travelocity is verifying my credit and "thou shalt not close this page before we complete verification or doom shall befall thee".
An hour later, that screen is still sitting there unchanged. Do I have a reservation or not? I have an email from Travelocity thanking me for registering, which was the last thing I did before this screen came up, but nothing about a reservation. Should I just shrug and start over? But then I could end up with two tickets, and painful nonrefundable cancellation nastinesses.
Dim memory of this exact thing happening to me about 18 months ago, when I was booking the flight to New Orleans. Same screen. Same staring nothingness.
I don't remember what the result was then.
So I called Travelocity.
After over a half an hour on hold, with the absolute worst music ever - I think it was supposed to sound Mexican fiesta-like, but it was 4 bars of very loud fast jangling, repeated endlessly over and over until I wanted to scream - I finally got to an agent. I told her she should tie down one of their public relations people and feed 'em this hold music crap through headphones for a few hundred repetitions, and then they'd understand why customers are so angry when they finally get to an agent. They need nice soothing classical music.
I explained what happened with the website, and she PUT ME ON HOLD AGAIN - that "music" again, 4 brain-beating bars over and over and over - and then came back to say there was no reservation, but she could do it for me now. I said ok. Again with all the minute details, and the repetition, and the verifying, and more repetition, and finally just short of an hour later it was done.
She sent me an email a few minutes later with all the details.
Travelocity had added on a fee for "phone reservations".
Let's see now. I call to report that their website doesn't work, they offer to fix things. They didn't tell me they are going to charge me a fee to compensate for my inconvenience... or was it their inconvenience... I'm confused....
I'm pissed.
Thursday, December 28, 2006
Wednesday, December 27, 2006
1039 Bits
Wednesday, December 27, 2006
About two years ago I bought a silk scarf, sent direct from Southeast Asia. I came across the care tag yesterday. It's cute.
Maintenance & collection
. Be sure not to put the silk scarf in the damp non-ventilation or point-blank sunshine places, so as not to let silk scarf appear fungus spot and fade.
. Avoid the silk scarf being infected with chemical such as drier; cosmetics; perfume directly. If the scarf is infected with chemical carelessly, it should be washed in time, otherwise it's easy to become yellow.
. Collapse and level off the scarf; you can also perch it on the smooth clothes hanger.
About two years ago I bought a silk scarf, sent direct from Southeast Asia. I came across the care tag yesterday. It's cute.
Maintenance & collection
. Be sure not to put the silk scarf in the damp non-ventilation or point-blank sunshine places, so as not to let silk scarf appear fungus spot and fade.
. Avoid the silk scarf being infected with chemical such as drier; cosmetics; perfume directly. If the scarf is infected with chemical carelessly, it should be washed in time, otherwise it's easy to become yellow.
. Collapse and level off the scarf; you can also perch it on the smooth clothes hanger.
Tuesday, December 26, 2006
1038 To Do List
Tuesday, December 26, 2006
I felt full of energy today. Cleaned the litterbox, cleaned the cat's bathroom, acid treated the guest toilet, repaired the laundry room toilet (bad flap), washed my hair, changed the sheets, washed dishes, made a grocery run, hemmed some pants, and so on. Made barely a dent in the To Do list.
I need to make reservations for a Mensa gathering in Florida in January that my Sister is going to attend with me, locate a GPS thingy for Hercules (he didn't get one for Christmas, so he'll get one for New Year's), pay some bills including the estimated taxes, pull together some numbers for Piper, send a photo of my mother to Daughter so she can render it in watercolor (or whatever medium she chooses) for me, send a note to FirstWoman about the New Year's Eve party (yes, I do want to go). That's for tonight yet. More for tomorrow.
Yesterday I made a bunch of "duty" calls, including Jay's father and May. May sounded really good, made my day, and Dad actually knew who I was right off. (He tends to confuse me with his middle daughter, whose name is similar to mine. On the other hand, he thought he was getting lobster for dinner. I suspect it was chicken.)
This is Jay's father and his dog, from this year's photo Christmas card. I was there when his eldest daughter took the pictures for the card, and I am surprised and amused that she chose this particular one. The doggie is a very sweet little beastie. That's actually just a yawn. Oh, and that's not Dad's real nose. He lost his real nose to skin cancer about 15 years ago. He got the stick-on nose last year, when there wasn't enough of his own left to support his glasses. He looks pretty good with it on, except that it's a bit too smooth. "Gee, Dad, you've got a 20-year-old's nose!" I believe he will be 90 next year.
Jay's whole family sends the "photo postcard" type card, along with an annualhappyshit bragsheet letter. Jay and his ex-wife had gone along with the tradition, but the first Christmas we were married, I refused. I dislike those cards. I did, however, have to do the letter, and I still have to contribute a paragraph to Jay's father's letter. But that's ok.
Now pardon me while I go online shopping. This could be fun. I don't speak GPS.
.
I felt full of energy today. Cleaned the litterbox, cleaned the cat's bathroom, acid treated the guest toilet, repaired the laundry room toilet (bad flap), washed my hair, changed the sheets, washed dishes, made a grocery run, hemmed some pants, and so on. Made barely a dent in the To Do list.
I need to make reservations for a Mensa gathering in Florida in January that my Sister is going to attend with me, locate a GPS thingy for Hercules (he didn't get one for Christmas, so he'll get one for New Year's), pay some bills including the estimated taxes, pull together some numbers for Piper, send a photo of my mother to Daughter so she can render it in watercolor (or whatever medium she chooses) for me, send a note to FirstWoman about the New Year's Eve party (yes, I do want to go). That's for tonight yet. More for tomorrow.
Yesterday I made a bunch of "duty" calls, including Jay's father and May. May sounded really good, made my day, and Dad actually knew who I was right off. (He tends to confuse me with his middle daughter, whose name is similar to mine. On the other hand, he thought he was getting lobster for dinner. I suspect it was chicken.)
This is Jay's father and his dog, from this year's photo Christmas card. I was there when his eldest daughter took the pictures for the card, and I am surprised and amused that she chose this particular one. The doggie is a very sweet little beastie. That's actually just a yawn. Oh, and that's not Dad's real nose. He lost his real nose to skin cancer about 15 years ago. He got the stick-on nose last year, when there wasn't enough of his own left to support his glasses. He looks pretty good with it on, except that it's a bit too smooth. "Gee, Dad, you've got a 20-year-old's nose!" I believe he will be 90 next year.
Jay's whole family sends the "photo postcard" type card, along with an annual
Now pardon me while I go online shopping. This could be fun. I don't speak GPS.
.
Monday, December 25, 2006
1037 A Doggie's Christmas
Monday, December 25, 2006
Got this from a friend:
Walkin in a Doggie Wonderland
Dog tags ring, are you listenin'?
In the lane, snow is glistenin'.
It's yellow, NOT white I've been there tonight,
Marking up my winter wonderland.
Smell that tree? That's my fragrance.
It's a sign for wandering vagrants;
"Avoid where I pee, it's MY pro-per-ty!
Marked up as my winter wonderland."
In the meadow dad will build a snowman,
following the classical design.
Then I'll lift my leg and let it go man,
So all the world will know it's mine-mine-mine!
Straight from me to the fence post,
flows my natural incense boast;
"Stay off my TURF, this small piece of earth,
I marked it as my winter wonderland."
.
Got this from a friend:
Walkin in a Doggie Wonderland
Dog tags ring, are you listenin'?
In the lane, snow is glistenin'.
It's yellow, NOT white I've been there tonight,
Marking up my winter wonderland.
Smell that tree? That's my fragrance.
It's a sign for wandering vagrants;
"Avoid where I pee, it's MY pro-per-ty!
Marked up as my winter wonderland."
In the meadow dad will build a snowman,
following the classical design.
Then I'll lift my leg and let it go man,
So all the world will know it's mine-mine-mine!
Straight from me to the fence post,
flows my natural incense boast;
"Stay off my TURF, this small piece of earth,
I marked it as my winter wonderland."
.
1036 The Hellhole - Clove Lakes, Staten Island
Monday, December 25, 2006
[Update, 11/13/09. I've decided to tell the name of the hellhole, Clove Lakes Health Care and Rehabilitation Center, in Staten Island, NY, and the names of the a**hole doctors, Fealey and Nadler, because this is all true, and it's a disservice to the world to protect them. We can only hope that the place has improved in the past 8 years, but I seriously doubt it.]
Again, as with the previous entry, I'm putting all this here, in my personal journal, to preserve it from hard disk destruction and floppy deterioration. Don't bother reading it unless you have lots of time and an overwhelming interest in medical sadism.
When it was time for the next cycle of immunotherapy, we moved Jay to a skilled-nursing home in Staten Island, close to the Nalitt Cancer Center. (They described themselves not as a nursing home, however, but as a physical rehabilitation facility.) Because they were out of network, our insurance would pay for his stay there only if he was getting physical therapy (PT). He could also have been admitted to the Staten Island University Hospital, but I had promised Jay he would never have to go there again.
Something I learned later - Medicare and other medical insurers won't pay for ordinary nursing home care except for a short recovery period after a specific incident. Otherwise, only long term care plans will pay. To get around this (and get the money) many nursing homes call themselves rehab centers. They can then take in nursing home candidates, and by offering a piss-poor physical and occupational therapy program to the residents, they can charge a heck of a lot more, and be sure of getting it. Beware of these places. They are cynical, just out for the money. Also beware of places that, as part of the intake process, ask you to sign a DNR form.
The following is our experiences during the first of two months at the Hellhole, from a notebook I kept at the time. I made the 5 hour round trip five or six days a week, arriving to be with Jay about 9 am, and leaving about 9 pm. The other one or two days a week were insurance battles, lining up ambulette transportation to and from the cancer center for Jay's treatments, taking care of the animals, paying bills, doing laundry (the nursing home did not do the residents' laundry) and so on.
I shall not use the name of the place for legal reasons (but the first word is a spice that usually goes well with cinnamon, and the second is a large body of water), and the foul doctor's names have a letter replaced to foil searches. But if anyone comes after me for this, it is all absolutely the truth as I experienced it, and I stand by it. Of course, this was all in 2001, six years ago. One hopes they have improved since then. [Insert cynical snort.]
The worst was the medications. In addition to the screwups documented here, medications were always dispensed late, and at much longer intervals than prescribed. Every three hours or so a nurse - ONE nurse - would set out with the meds cart, to cover the entire floor. Jay was supposed to get certain meds every four hours, but they would arrive three hours late, so they'd just shrug and skip the next dose. This is unforgiveably sloppy when the purpose is to control, for example, intracranial edema.
-----------------------------
At this point I got super-proactive. I read ALL the nursing notes and charts every morning and evening. I asked more questions. I raised Hell. I became a royal pain, but I made things happen. The "keeping of the journal" suffered. Notes are sparse and usually undated.
I discovered that Jay hadn't had a bowel movement in ten days and no one had done anything about it. The nurses were not aware that rectal stimulation with a brain tumor does not cause the same feedback problems as with spinal injury, and that they cannot use water ememas, it must be oil, but a simple stool softener would do wonders. I tried to educate them, and then just went out and bought the stuff myself. Occasionally I locked the door and removed rocks the old-fashioned way.
He was supposed to get a shower once a week, but for three weeks in a row, the aides had a meeting during Jay's shower time, and he was not rescheduled. I gave him showers myself, a few times a week, late at night when the shower was free.
I discovered what "not medically indicated" meant, as pertained to his PT. His diagnosis had been high-grade oligoastrocytoma, but after the last surgery it had been downgraded to oligodendroglioma, a less virilent tumor. The worst is a glioblastoma multiforme (GBM). I had, right from the beginning, asked all his doctors if the astrocytic component could be GBM, and they always said no, that the cells didn't have the characteristic look. Which is good, because the prognosis for GBM with Jay's history of recurrance is extremely bad. Well, under "diagnosis" in his charts, someone had at some point changed it to GBM!, apparently without having consulted any of the doctors who mattered. The "indication" for PT is a possibility of going home and living. GBM says not expected to live. And that's the REAL reason the PT was stopped.
I attempted to get a copy of that page. Copies were something like $1 per page (an obvious attempt to discourage copying), and you were not allowed to make the copies yourself. An "order" had to be placed. I bit the bullet and ordered copies of like 50 pages, which were not delivered to me for more than a week. And when the copies arrived, all the bad stuff in there, like the misdiagnosis, the lack of bowel movements, the overlap of Lortab and Oxy-IR, the big holes where prescribed meds had not been dispensed, all of it had all been "corrected". How cute.
I helped him brush his teeth morning and evening on the days I was there. If I was away one day, the next day I found food packed between his left jaw and cheek. With his left-side neglect, he was not aware it was there and was not able to remove it with his tongue. It was obvious no one was helping him to brush his teeth when I wasn't there. When I asked the nurses why not, I was told "there wasn't any point", and I was shown the intake form, where under "teeth", it said "missing, broken, decayed ...", all the bad stuff. This was a man who brushed his teeth three times a day, who visited the dentist for cleaning every six months, and was never in there more than 20 minutes. His teeth were perfect.
It took some digging to find out what had happened. An aide explained it. They had our address wrong. Instead of our village, they had a similar-sounding section of NYC - a section by the docks, populated mostly by people who, well, "you don't want to look in their mouths", as the aide said. Because of the wrong address, they had made a bunch of assumptions without ever checking, like that he never brushed his teeth, and wouldn't mind not having had a shower in a month. You can bet I set a few people straight on that!
I asked if we could bring in private nurses (to ensure proper monitoring and medication, and personal care). Dr. Feal3y said no, it wasn't necessary, and would not possibly be approved. I hated him.
This was a multistory building, and Jay was on the third floor (I think). There was only one bank of two elevators, and they were taking people downstairs in wheelchairs for PT/OT all day long. During meal delivery times, three times a day, for like two hours every time, the kitchen staff "locked" one elevator for their exclusive use. Three days a week, Jay had to go to Nalitt for immunotherapy. The ambulette would arrive, and the driver would come up the stairs to get Jay, and, this is not an exaggeration, we often had to wait up to two hours before we could get on the elevator to take him down. It made for a very long and difficult day for Jay.
Having been in a fire, escape routes concern me. I asked how they planned to get residents out if there was a fire, and no one had an answer. There was no coherent plan for getting people out. They'd point to all the fire stairs, but almost all the residents were incapable of handling stairs. I thought it odd that most of the ambulatory people were on the first floor, which made no sense to me.
Our insurance company always wanted and paid for a minimum of three weeks of meds at a clip. The Hellhole doctor would arbitrarily D/C meds, but I never found out what happened to those unused pills. We never got a refund. The nurse's cart had a "chamber" for each person, and when something was stopped, the bottle just disappeared from the chamber. When they were arbitrarily restarted three days later, we had to buy a whole new batch. When Jay was discharged, a new three-week supply of all his meds had just arrived like two days before. I foolishly assumed we would be taking them with us, and then found out that they would allow only a five-day supply to be taken home. This was serious - it takes our little local pharmacy more than a week to dispense Oxycontin and Fragmin, because they had to be specially ordered and required special handling. I freaked. I insisted that either they allow us to take the whole supply, or they refund the moneys paid for them (it was over $800 worth of meds we'd paid for and they refused to allow us to have). I got the insurance company in on it too. I won. We took it all with us.
There are places online where you can get all the state inspection reports on nursing homes, and can see all the complaints and incident reports. It is state law that ALL mistakes in medication MUST be reported. Also, all complaints of thefts and so on must be reported. I had checked these sites before we agreed to the Hellhole, and the Hellhole looked good. During Jay's stay, I filed multiple complaints about medication errors (the wrong stuff, the overlap of Lortab and Oxy-IR, the yellow highlighter causing arbitrary D/Cing) and the theft of his radio. I continued to check the website after we left and for the next year, and, surprise!, there were NO medication errors or thefts reported to the state. Unfortunately, I have no proof. I suspect the Hellhole's paperwork will show no errors, no thefts, and no reports filed.
In early May, when the Hellhole's opthamologist had STILL not made it in to see Jay, after numerous requests and promises, and Jay's eyesight was almost totally gone, I made an outside appointment with an independent othamologist. Believe it or not, the Hellhole staff attempted to prevent me from taking Jay to the appointment. The opthamologist was aghast. The optic nerves (I forget what that point in the back of the eyeball is called) were completely and utterly eroded, to a point past redemption. He said it was due to too much intracranial pressure. No shit, George. Wanna tell Dr. Feal3y that?
I had to get him out of there.
Jay had another round of immunotherapy during late April and early May, I think. At the end of that round, he was to have six weeks or so off before it would restart. I wanted to take him home, where he would get his meds on time, where I could take REAL care of him. We could have a physical therapist come in, and Sunnyview had taught me how to exercise him, lift him. help him. We could do it. But the Hellhole told me that if I took him out before they were ready to discharge him, he could not come back. What was required to discharge him? He had to complete the physical therapy and be certified capable of ... whatever. Duh? The physical therapy you keep stopping? At that point, I told them that I'd seen REAL PT at Sunnyview, and this Hellhole was just playing at it.
So Jay and I talked about it, and I bought the ramp-equiped van, and I brought him home. And we weren't going back. He was completely blind now, and so he couldn't sit comfortably, let alone stand, transfer, walk, feed himself, anything, because he couldn't see his left side to control it. His mind was actually pretty much fine, even with a quarter of his brain gone.
When his "back home" doctors saw his condition, and heard what had gone on in the Hellhole, they wanted Dr. Feal3y reported. They said that at the very least, Dr. Panullo should report him for failing to respond to her phone calls and faxes. Some pressure was put on her, but she was very reluctant. Her assistant told me that Dr. Panullo would have other patients that would need a place to stay while undergoing therapy, and she didn't want the Hellhole to refuse to accept her patients.
Politics.
Looking back, I suspect that a lot of Dr. Feal3y's stupidity was territorial. He didn't like other doctors telling him what Jay's care should be, therefore he had to do it differently just to exercise his power. The understaffing at the Hellhole that led to Jay's not getting his meds on time was purely budgetary. They really didn't care.
At the end of the six week hiatus, it was obvious that Jay would not be able to withstand another round of immunotherapy. We had looked into having it done in Albany, a trip he might be able to handle, but he was too weak.
The Hellhole and Dr. Feal3y had damaged Jay badly. In later MRIs, it seemed that the immunotherapy had been working. But the blinding caused by the poorly controlled edema kept him immobile, which led to physical deterioration, in spite of my exercising him almost constantly. His liver and kidneys were damaged. That's what eventually killed him - organ failure. Not the brain cancer. That, we almost beat.
[Update, 11/13/09. I've decided to tell the name of the hellhole, Clove Lakes Health Care and Rehabilitation Center, in Staten Island, NY, and the names of the a**hole doctors, Fealey and Nadler, because this is all true, and it's a disservice to the world to protect them. We can only hope that the place has improved in the past 8 years, but I seriously doubt it.]
Again, as with the previous entry, I'm putting all this here, in my personal journal, to preserve it from hard disk destruction and floppy deterioration. Don't bother reading it unless you have lots of time and an overwhelming interest in medical sadism.
When it was time for the next cycle of immunotherapy, we moved Jay to a skilled-nursing home in Staten Island, close to the Nalitt Cancer Center. (They described themselves not as a nursing home, however, but as a physical rehabilitation facility.) Because they were out of network, our insurance would pay for his stay there only if he was getting physical therapy (PT). He could also have been admitted to the Staten Island University Hospital, but I had promised Jay he would never have to go there again.
Something I learned later - Medicare and other medical insurers won't pay for ordinary nursing home care except for a short recovery period after a specific incident. Otherwise, only long term care plans will pay. To get around this (and get the money) many nursing homes call themselves rehab centers. They can then take in nursing home candidates, and by offering a piss-poor physical and occupational therapy program to the residents, they can charge a heck of a lot more, and be sure of getting it. Beware of these places. They are cynical, just out for the money. Also beware of places that, as part of the intake process, ask you to sign a DNR form.
The following is our experiences during the first of two months at the Hellhole, from a notebook I kept at the time. I made the 5 hour round trip five or six days a week, arriving to be with Jay about 9 am, and leaving about 9 pm. The other one or two days a week were insurance battles, lining up ambulette transportation to and from the cancer center for Jay's treatments, taking care of the animals, paying bills, doing laundry (the nursing home did not do the residents' laundry) and so on.
I shall not use the name of the place for legal reasons (but the first word is a spice that usually goes well with cinnamon, and the second is a large body of water), and the foul doctor's names have a letter replaced to foil searches. But if anyone comes after me for this, it is all absolutely the truth as I experienced it, and I stand by it. Of course, this was all in 2001, six years ago. One hopes they have improved since then. [Insert cynical snort.]
The worst was the medications. In addition to the screwups documented here, medications were always dispensed late, and at much longer intervals than prescribed. Every three hours or so a nurse - ONE nurse - would set out with the meds cart, to cover the entire floor. Jay was supposed to get certain meds every four hours, but they would arrive three hours late, so they'd just shrug and skip the next dose. This is unforgiveably sloppy when the purpose is to control, for example, intracranial edema.
-----------------------------
- 03/19/01 Monday - Arrival at the Hellhole, apx. 3 PM. List of medications and prescriptions had been sent ahead, including
- Hydrocodone/APAP 10/500 1 to 1 1/2 every four hours or 2 every 6 hours (prescribed by the neurologist),
- Fragmin 5000u 1 every day,
- Dilantin 300mg twice a day,
- Topamax 25mg at bedtime,
- Dexamethasone 4 mg (Decadron) every 8 hours.
- 03/20 Tuesday - I discover that the nurse’s meds list does not include the Hydrocodone, and the Fragmin had been D/C’d (discontinued). Jay had just come off Tamoxifen, which is famous for causing DVT, he needed that Fragmin! Also they don’t plan to use the Teds (pressure stockings). They plan to treat the headache with Tylenol. I explain that the headache is due to a TUMOR!, that he’s had a constant blinding (literally) headache since mid-December, and Tylenol alone just doesn’t do it. The immunotherapy actually creates an infection in his brain. Swelling and pain is expected. There will be pressure on the eyes, ears, brainstem, etc., and increased blood flow. The Hydrocodone will dull the pain, and if you then give 2-3 Tylenol when the hydrocodone starts to wear off in about 4 hours, you can sometimes hold it for another 4 hours. Jay: bad headache, nausea, visual disturbances including vertical double vision and “gray patches”. Evaluated for PT/OT.
- 03/21/01 Wednesday - To Nalitt Institute for white cell collection. He is there from 8 AM until about 3 PM. No meds have been sent with him. Dr. Pannullo suggests an eye patch for the double vision - may help with the nausea and will certainly help him to see better. Jay: headache, dizziness, nausea. Collection doctor finds so much clotting he can’t use the right groin, left side also has clots but he is able to push through them. (And the Hellhole doctor D/C'd the Fragmin!) Back at CL, I insist on Teds (we had brought three pair), and ask nurse to inform Dr. Feal3y about eye patch to help Jay see. Lortab has been prescribed by Dr. Feal3y for headache, instead of Hydrocodone. My pointing out that Lortab contains a lot of acetaminophen, and Jay's been getting too much acetaminophen for someone who's been on heavy chemotherapy for two years, seems to have no effect.
- 03/24 Saturday - Jay: Vomiting and severe headache behind right eye since Wednesday. We can’t seem to get Lortab often enough or soon enough to control it.
- Note - sometime along about here I discover that he is not getting the Decadron consistently. They “D/C” orders by crossing it out with yellow highlighter. It seems the yellow had bled through from D/Cing something on the other side of the page, and depending on who was dispensing the meds, they thought this order had been D/C’d. I point out the problem. (When we left, they were still using the highlighter, and it was still bleeding through.) It's no wonder the edema is increasing.
- 03/26 Monday - I discover that Lortab is dispensed 1 tablet every 6 hours! This is 1/2 to 2/3 the dose he needs, especially given that it lasts on average only 3 1/2 hours. By the time he gets a pill, the headache is too bad for the pill to do much. Also, it’s on request only! When it’s REALLY bad, it doesn’t occur to a lethargic suffering Jay to ask, especially at night. Especially when bedside bell is NEVER answered at night. Especially when they keep putting the bell button on the left, and I keep explaining to the that he can't find it on the left. "Left" does not exist. I ask nurse to ask Dr. Feal3y to increase dose to at least the level prescribed by the neurologist for the hydrocodone. To Nalitt for first infusion of cycle.
- 03/27 Tuesday - Jay: Mental confusion, pain in neck, headache. Meds have NOT been corrected. They “don’t want to overmedicate him.” Dr. Feal3y obviously has no concept of what's going on, and is ignoring the edema. Dr. Panullo has given up on Dr. Feal3y returning calls, and has faxed him a letter. From external appearances, with the weak exception of the eye patch, the letter was also ignored.
- 03/28 Wednesday - Eye patch ordered pending exam by “eye guy” Dr. All3n, who comes to CL once a week. To Nalitt for second infusion. Jay: headache, having some trouble holding head up, but otherwise ok. I discuss headache situation with Dr. Panullo, she says meds must be given every 4 hours to prevent the headache. I ask CL nurse to ask Dr. Feal3y to adjust the meds, based on Jay’s neurosurgeon(Panullo)’s recommendation, that he should call Dr. Panullo if there are any questions.
- 03/30 Friday - Still on Lortab 6 hour PID for headaches. To Nalitt for third infusion. Jay: headaches, badly slumped over in chair, back of head parallel to floor, vomiting, vision is worse, he’s almost blind. Jay’s appearance worries Dr. Hayes, so she reduces dose of IL-2. It was the third infusion that wiped him out last time, and so I am worried that with the weekend coming, the nurses won’t know what to do if he crashes. Dr. Panullo writes three scripts to take to Dr. Feal3y---1. Oxy-IR every four hours for headache (she’s also worried that he’s been taking heavy doses of acetaminophen since Jan, Oxy-IR is oxycodone without acetaminophen), 2. if excessive nausea, lethargy, vomiting, or headache, give a “booster” of 8 mg Decadron, and 3. if excessive etc. increase Decadron to 4 mg every 6 hours. I give them to the nurses and they put them in the book, and I discuss the potential problem and logic with Dr. Szel3s, who is on duty at the Hellhole that afternoon/evening. The nurses ask “what’s excessive?” so I write a page defining "excessive" lethargy, vomiting, etc. which also goes into the book. That evening, I find Jay is still on Lortab every 6 hours, and the Decadron has already been increased, AND they have the booster of Decadron “every day for three days”. I freak, and call Dr. Panullo at home. Several phone calls later between Dr. Szel3s and Dr. Panullo, she and I think it’s all fixed. In the meantime, Jay got nothing for the headache from noon to 7:30 PM. Meg and Nelly came to room apx. 3 PM for PT/OT, they said that he was doing very well at PT/OT and improving. This is amazing - asking him to do PT would be like asking a migraine suffer to dance. The floor nurses have also commented that he is trying to use his left arm a lot more, too. I had noticed he bridges better, and doesn’t dangle the left arm.
- 04/01 Sunday - Still on Lortab every six hours. The Oxy-IR “has not yet arrived from the pharmacy.” Jay: Very bad headaches. Has been throwing up meals for two days (but not excessive - excessive would be several times in a few hours, or just stomach acid, or dry heaves). Very lethargic, but still interested in my reading to him from Scientific American, good commentary from him.
- 04/02 Monday - To Nalitt for fourth infusion. Jay: bad headache, double vision. Dr. Pannullo faxed a request for Oxy-IR to Dr. Feal3y. When we got back to CL, I looked at Meds orders. The order written the previous Friday said “Lortab every six hours PID for 7 days, then reevaluate”. Reevaluate what!?!?!? I freaked again. A nurse told me that Dr. Feal3y didn’t want to go to the Oxy-IR, and didn’t want to go to four hours, because he didn’t want to dope Jay to the point where he couldn’t participate in PT. (Actually, it a wonder he has been able to so far with the screaming headaches he’s had.) Later, at 5 PM, we asked for headache medicine, and got only Tylenol. The nurse told me that the Lortab had been D/C’d, and the Oxy-IR had not yet arrived (they use a pharmacy in Long Island). I said something to the effect of “don’t you think that’s rather stupid?” She called a doctor and got the Lortab back on until the arrival of the Oxy-IR.
- 04/03 Tuesday - Oxy-IR has arrived, to be given every four hours while awake. Jay somewhat confused on phone in AM, but has no pain. In PM, he says someone offered him a Lortab and he refused it. I called nurse, and she said of course not, Lortab is D/C’d now that Oxy-IR is here.
- 04/04 Wednesday - A nurse (Maria?) asked me if Jay should still be getting the Lortab. It had not been D/C’d! They're giving him both Lortab and Oxy-IR! Jay says he refused Lortab again this morning. This may explain his mental confusion yesterday morning. They could have put him into a coma! To Nalitt for fifth infusion. Jay: feels much better, is sitting up well, still some headache but better controlled, still vertical double vision. Dr. Pannullo again suggests eye patch.
- 04/06 Friday - To Nalitt for sixth infusion, last of this cycle. Jay: feeling and looking great. Meg was enthusiastic about his performance in PT, says he did 20 left leg lifts, and was asking “What’s next?” after each exercise. She said he did very well. The Oxy-IR is helping, as we'd predicted.
- 04/07 Saturday - Jay: sounded good on the phone.
- 04/08 Sunday - Jay: pain in right ear, lethargic, couldn’t cooperate with PT. (Hindsight - I should have recognized ear pain as first sign of increasing edema pressure in brain.) Reported ear pain to nurse. Must be bad if it breaks through Oxy-IR. Threw up in evening.
- 04/09 Monday - Dr. Feal3y saw him as usual in AM, but didn’t have an otoscope - said he’d return with one, never did. Jay: pain in ear, mental confusion, lethargic but still responsive, very nauseated.
- 04/10 Tuesday - Saw Dr. Feal3y (for the first time! He'd never before been in the building when I was there) in lobby on way in, told him I was worried that the edema was increasing, “I haven’t seen him yet today”, but Jay has been getting steadily worse since Saturday, it looked very much like pressure to me, it may be time to increase the Decadron. He said no, “we don’t want to overmedicate”. (Doesn’t he see the symptoms? Doesn't he understand the edema?) However, he would order the eye patch, “might help with the nausea”. (Like nausea is the big problem? Like it’s ok that he has been virtually blind, that he can’t tell what his left arm or leg are doing unless he can see them, and he can’t see them with the visual confusion, but people keep asking him to move them in certain ways, but that’s ok? That wasn’t enough reason already?) When I get upstairs, I discover that the eye patch has been ordered since 3/28, but that Dr. All3n still hasn’t seen Jay yet to approve it. (Dr. All3n had been in on 4/7, but did not stop to see Jay.) Jay: almost falling out of the wheelchair, the Ommaya is too hard (definite sign of high intracranial pressure), he is almost unresponsive, vomiting AM and PM. He gets worse as the day goes on, and when I leave, I tell the nurses to have Dr. Feal3y call me from Jay’s room in the morning. I want to point out the symptoms while the example is there in front of him. Frankly, I wonder if he isn’t annoyed at me for insisting on the Oxy-IR, and has decided that Jay is merely “doped up”. I get home at 11:30 PM, and find a telephone message from the nursing supervisor They are very worried about Jay, he is unresponsive, they have consulted the dr on call, and have already given him the decadron booster (only 4 mg, not the 8 mg Dr. Pannullo wanted), have increased the decadron, and if he doesn’t improve during the night, they will send him to the hospital.
- 04/11 Wednesday - Dr. Feal3y doesn’t call from Jay’s room. He calls about noonish, (I am in Jay's room then) after I asked the nurse to remind him. He says Jay has responded to the decadron and is looking better, and has his eye patch. I am very proud that I don’t scream at him. Jay: lethargic, but not like Tuesday, some nausea, but no throwing up, headache.
- 04/12 Thursday - Jay: threw up breakfast and lunch, lethargy, overemotional, mentally more alert, projectile vomit in PM. His 11 AM Dilantin arrived at 1:30 PM today, I’ve noticed that for the past week, that timing of meds seems to be very loose. Also, I worry about his vomiting up meds, they don't do any good if they don't stay down. I also noticed that they give him the decadron on an empty stomach. That alone will cause nausea. (Jay gets excess acid.) Have asked nurses to give cookie or milk with decadron. (They say ok, write it down, but never do it.)
- 04/13 Friday - Jay: nausea in AM, but no throwing up.
- 04/14 Saturday - Jay: holding head up again, looking better, a little nausea, but no throwing up, active and interested, says eyes are working a little better. Effects of the infusions are apparently wearing off, edema decreasing.
- 04/16 Monday - Meeting this morning , supposed to be to discuss “his care”. Attendees were from dietary, recreation, social services, and the nurse supervisor Carrie. Dr. Feal3y was not there, nor was anyone there from PT/OT, until they called in Nelly (OT) at my request. I was shocked to learn that PT had been D/C’d as of the previous Wednesday, 04/11. I was very angry that I had not been informed. I was told that “the team” felt that he had not been participating, and was not progressing. I maintained that if they went back to 04/06 and before, the opinion was different, and that any more recent non-participation was due to inadequate medication. I requested a reevaluation now that he has the proper headache dosing and the edema is under control. The Dietary guy was pleased that Jay, at 222 lbs, had gained 20 lbs. I didn’t mention to him that when the aides had weighed him and got 202, the arm of the scale was resting partly on the bed. He had weighed 240 when I brought him in. Jay: very good today, sitting up straight, eating well, no nausea. I sat in on a bit of his OT, not much to see. Asked if I could attend all future OT sessions, Nelly said OK. The 11 AM Dilantin arrived at 1:45 PM today. This is getting really sloppy!
- 04/17 Tuesday - Caught Dr. Nadl3r (OT/PT) in the hall on the way in and asked him to reevaluate Jay. He was very negative, obviously didn’t want to talk to me, didn’t feel there was any point, that Jay had been making no progress and his participation was very ragged. I said that’s not what his therapists had been saying a week back, that the recent deterioration was a side effect of his immunotherapy. I even asked (begged) if it wasn’t sufficient to go on to keep him from physically deteriorating, prevent atrophy (not my real point - I think Jay will do much better now that there will be a three week break in immunotherapy and win them over), but he responded (and I was shocked!) that “keeping him from deteriorating is not medically indicated.” What does that mean? Jay: very good today, head straight, good appetite, no double vision. In OT, sat up for what seemed like a long time with no support, back slumped when he got tired, balance improved - withstood prods from back, a bit from side, but fell over when prodded from front. Reaches with left hand, but with flailing motion. But at least he’s reaching. That’s a big improvement.
- inadequate medication for his headaches, even after requests from his neurosurgeon, who knew best what he was experiencing
- side effects of the immunotherapy, (edema and associated lethargy) also inadequately and belatedly treated
- inadequately and belatedly treated visual problems which made it difficult for him to see and therefore control his left limbs.
At this point I got super-proactive. I read ALL the nursing notes and charts every morning and evening. I asked more questions. I raised Hell. I became a royal pain, but I made things happen. The "keeping of the journal" suffered. Notes are sparse and usually undated.
I discovered that Jay hadn't had a bowel movement in ten days and no one had done anything about it. The nurses were not aware that rectal stimulation with a brain tumor does not cause the same feedback problems as with spinal injury, and that they cannot use water ememas, it must be oil, but a simple stool softener would do wonders. I tried to educate them, and then just went out and bought the stuff myself. Occasionally I locked the door and removed rocks the old-fashioned way.
He was supposed to get a shower once a week, but for three weeks in a row, the aides had a meeting during Jay's shower time, and he was not rescheduled. I gave him showers myself, a few times a week, late at night when the shower was free.
I discovered what "not medically indicated" meant, as pertained to his PT. His diagnosis had been high-grade oligoastrocytoma, but after the last surgery it had been downgraded to oligodendroglioma, a less virilent tumor. The worst is a glioblastoma multiforme (GBM). I had, right from the beginning, asked all his doctors if the astrocytic component could be GBM, and they always said no, that the cells didn't have the characteristic look. Which is good, because the prognosis for GBM with Jay's history of recurrance is extremely bad. Well, under "diagnosis" in his charts, someone had at some point changed it to GBM!, apparently without having consulted any of the doctors who mattered. The "indication" for PT is a possibility of going home and living. GBM says not expected to live. And that's the REAL reason the PT was stopped.
I attempted to get a copy of that page. Copies were something like $1 per page (an obvious attempt to discourage copying), and you were not allowed to make the copies yourself. An "order" had to be placed. I bit the bullet and ordered copies of like 50 pages, which were not delivered to me for more than a week. And when the copies arrived, all the bad stuff in there, like the misdiagnosis, the lack of bowel movements, the overlap of Lortab and Oxy-IR, the big holes where prescribed meds had not been dispensed, all of it had all been "corrected". How cute.
I helped him brush his teeth morning and evening on the days I was there. If I was away one day, the next day I found food packed between his left jaw and cheek. With his left-side neglect, he was not aware it was there and was not able to remove it with his tongue. It was obvious no one was helping him to brush his teeth when I wasn't there. When I asked the nurses why not, I was told "there wasn't any point", and I was shown the intake form, where under "teeth", it said "missing, broken, decayed ...", all the bad stuff. This was a man who brushed his teeth three times a day, who visited the dentist for cleaning every six months, and was never in there more than 20 minutes. His teeth were perfect.
It took some digging to find out what had happened. An aide explained it. They had our address wrong. Instead of our village, they had a similar-sounding section of NYC - a section by the docks, populated mostly by people who, well, "you don't want to look in their mouths", as the aide said. Because of the wrong address, they had made a bunch of assumptions without ever checking, like that he never brushed his teeth, and wouldn't mind not having had a shower in a month. You can bet I set a few people straight on that!
I asked if we could bring in private nurses (to ensure proper monitoring and medication, and personal care). Dr. Feal3y said no, it wasn't necessary, and would not possibly be approved. I hated him.
This was a multistory building, and Jay was on the third floor (I think). There was only one bank of two elevators, and they were taking people downstairs in wheelchairs for PT/OT all day long. During meal delivery times, three times a day, for like two hours every time, the kitchen staff "locked" one elevator for their exclusive use. Three days a week, Jay had to go to Nalitt for immunotherapy. The ambulette would arrive, and the driver would come up the stairs to get Jay, and, this is not an exaggeration, we often had to wait up to two hours before we could get on the elevator to take him down. It made for a very long and difficult day for Jay.
Having been in a fire, escape routes concern me. I asked how they planned to get residents out if there was a fire, and no one had an answer. There was no coherent plan for getting people out. They'd point to all the fire stairs, but almost all the residents were incapable of handling stairs. I thought it odd that most of the ambulatory people were on the first floor, which made no sense to me.
Our insurance company always wanted and paid for a minimum of three weeks of meds at a clip. The Hellhole doctor would arbitrarily D/C meds, but I never found out what happened to those unused pills. We never got a refund. The nurse's cart had a "chamber" for each person, and when something was stopped, the bottle just disappeared from the chamber. When they were arbitrarily restarted three days later, we had to buy a whole new batch. When Jay was discharged, a new three-week supply of all his meds had just arrived like two days before. I foolishly assumed we would be taking them with us, and then found out that they would allow only a five-day supply to be taken home. This was serious - it takes our little local pharmacy more than a week to dispense Oxycontin and Fragmin, because they had to be specially ordered and required special handling. I freaked. I insisted that either they allow us to take the whole supply, or they refund the moneys paid for them (it was over $800 worth of meds we'd paid for and they refused to allow us to have). I got the insurance company in on it too. I won. We took it all with us.
There are places online where you can get all the state inspection reports on nursing homes, and can see all the complaints and incident reports. It is state law that ALL mistakes in medication MUST be reported. Also, all complaints of thefts and so on must be reported. I had checked these sites before we agreed to the Hellhole, and the Hellhole looked good. During Jay's stay, I filed multiple complaints about medication errors (the wrong stuff, the overlap of Lortab and Oxy-IR, the yellow highlighter causing arbitrary D/Cing) and the theft of his radio. I continued to check the website after we left and for the next year, and, surprise!, there were NO medication errors or thefts reported to the state. Unfortunately, I have no proof. I suspect the Hellhole's paperwork will show no errors, no thefts, and no reports filed.
In early May, when the Hellhole's opthamologist had STILL not made it in to see Jay, after numerous requests and promises, and Jay's eyesight was almost totally gone, I made an outside appointment with an independent othamologist. Believe it or not, the Hellhole staff attempted to prevent me from taking Jay to the appointment. The opthamologist was aghast. The optic nerves (I forget what that point in the back of the eyeball is called) were completely and utterly eroded, to a point past redemption. He said it was due to too much intracranial pressure. No shit, George. Wanna tell Dr. Feal3y that?
I had to get him out of there.
Jay had another round of immunotherapy during late April and early May, I think. At the end of that round, he was to have six weeks or so off before it would restart. I wanted to take him home, where he would get his meds on time, where I could take REAL care of him. We could have a physical therapist come in, and Sunnyview had taught me how to exercise him, lift him. help him. We could do it. But the Hellhole told me that if I took him out before they were ready to discharge him, he could not come back. What was required to discharge him? He had to complete the physical therapy and be certified capable of ... whatever. Duh? The physical therapy you keep stopping? At that point, I told them that I'd seen REAL PT at Sunnyview, and this Hellhole was just playing at it.
So Jay and I talked about it, and I bought the ramp-equiped van, and I brought him home. And we weren't going back. He was completely blind now, and so he couldn't sit comfortably, let alone stand, transfer, walk, feed himself, anything, because he couldn't see his left side to control it. His mind was actually pretty much fine, even with a quarter of his brain gone.
When his "back home" doctors saw his condition, and heard what had gone on in the Hellhole, they wanted Dr. Feal3y reported. They said that at the very least, Dr. Panullo should report him for failing to respond to her phone calls and faxes. Some pressure was put on her, but she was very reluctant. Her assistant told me that Dr. Panullo would have other patients that would need a place to stay while undergoing therapy, and she didn't want the Hellhole to refuse to accept her patients.
Politics.
Looking back, I suspect that a lot of Dr. Feal3y's stupidity was territorial. He didn't like other doctors telling him what Jay's care should be, therefore he had to do it differently just to exercise his power. The understaffing at the Hellhole that led to Jay's not getting his meds on time was purely budgetary. They really didn't care.
At the end of the six week hiatus, it was obvious that Jay would not be able to withstand another round of immunotherapy. We had looked into having it done in Albany, a trip he might be able to handle, but he was too weak.
The Hellhole and Dr. Feal3y had damaged Jay badly. In later MRIs, it seemed that the immunotherapy had been working. But the blinding caused by the poorly controlled edema kept him immobile, which led to physical deterioration, in spite of my exercising him almost constantly. His liver and kidneys were damaged. That's what eventually killed him - organ failure. Not the brain cancer. That, we almost beat.
1035 Brain Cancer Timeline
Monday, December 25, 2006
I've been cleaning out old hardcopy files, and I found some stuff I want to preserve, just in case my hard disk fawl-down-go-boom. This seems like a good place to put it, this being "my journal" and all that. It may or may not be interesting to anyone else, but that's not the point. Whatever. Just thought I'd warn anyone who stumbles into this entry.
When Jay was ill, I kept a timeline, so that as we went from medical center to medical center, doctor to doctor, they were aware of what had gone before, and what films and lab reports were available. This is it. We must have had very good doctors, because believe it or not they really were interested in this information, and often asked for specific materials. We always requested and got "second originals" (not copies) of scan films and copies of reports, so we had them instantly available, in our possession. By the third year I was carrying around a canvas bag containing about 30 pounds of films and reports.
I am going to throw out the lab reports, but I still have all the MRI and CAT scan films.
[Editorial - At this point I was extremely angry. This surgery damaged him terribly. They removed at lot of healthy material. When the doctors at AMC, SIUH, and Nalitt looked at the scans, they couldn't tell the difference between tumor and necrosis, which is not unusual. But Jay had no midline deviation, and the brain sinuses were normal. We begged for a PET scan, which could tell whether the mass was active or necrotic, but neither AMC nor SIUH had the facility, although competing hospitals did, and no one would write the order. It looks to me like the Tamoxifen was working, hence all the necrosis, and this degree of extremely damaging surgery was unnecessary had we known it was necrosis. In addition, his care at SIUH was extremely poor, uncaring. When he was discharged, I had to promise him he never ever had to go back there again.]
The nursing home was an awful experience. The place was a hellhole, right from day one. I kept a more detailed diary on that place, and seriously considered a lawsuit - except that they kept removing pages from his records, and "correcting" records, and would not make copies, and so I ended up with blessed little hard documentation.
That's another entry.
.
I've been cleaning out old hardcopy files, and I found some stuff I want to preserve, just in case my hard disk fawl-down-go-boom. This seems like a good place to put it, this being "my journal" and all that. It may or may not be interesting to anyone else, but that's not the point. Whatever. Just thought I'd warn anyone who stumbles into this entry.
When Jay was ill, I kept a timeline, so that as we went from medical center to medical center, doctor to doctor, they were aware of what had gone before, and what films and lab reports were available. This is it. We must have had very good doctors, because believe it or not they really were interested in this information, and often asked for specific materials. We always requested and got "second originals" (not copies) of scan films and copies of reports, so we had them instantly available, in our possession. By the third year I was carrying around a canvas bag containing about 30 pounds of films and reports.
I am going to throw out the lab reports, but I still have all the MRI and CAT scan films.
- 10/03/98 First seizures. ND Hospital. Dr. WGooch. Start Dilantin.
- 10/03/98 CT scan - judged normal.
- 10/08/98 MRI - shows tiny "pinhole" bright spot, so small a different "slicing" would have missed it..
- 01/28/99 Followup MRI shows "golf ball" sized tumor.
- 02/07/99 Complete body bone scan to rule out secondary source, Kingston Hospital. (Shows right kidney is missing. Surprise.)
- 02/08/99 Pre-op MRIs, Albany Medical Center.
- 02/09/99 Right parietal occipital craniotomy and resection of brain tumor. AMC, Dr. JPopp. Pathology says high grade mixed glioma, oligoastrocytoma.
- 02/11/99 Post-op MRI, AMC.
- 03/08/99 Sign up for clinical trial of intensified PCV (procarbazine, CCNU, and vincristine, at 150% the normal dosage) with bone marrow transplant (BMT). AMC, Dr. SWeaver.
- 04/06/99 Start stem cell collection (apheresis). Has "absence seizure" during procedure on 04/07.
- 04/08/99 End apheresis.
- 04/19/99 Start PCV clinical trial cycle 1 (42-day cycle).
- 05/05/99 MRI, AMC.
- 07/02/99 MRI, AMC.
- 08/23/99 Stopped PCV after 3 cycles. Prior MRIs say tumor is under control. Start testing for bone marrow transplant.
- 09/19/99 MRI, AMC, last tests before BMT.
- 09/20/99 Yesterday's MRI shows tumor has returned, as big as before surgery. BMT canceled.
- 10/05/99 Pre-op MRI.
- 10/06/99 Right parietal occipital craniotomy and resection of tumor, AMC, Dr. JPopp.
- 10/06/99 Post-op MRI, AMC.
- 10/27/99 CT scan for radiation planning, Vassar Brothers Hospital.
- 11/04/99 Start fractionated radiotherapy, VBH, Dr. MBurke.
- 11/05/99 CT scan for radiation planning.
- 12/21/99 End fractionated radiotherapy, 33 treatments.
- 01/10/00 MRI, AMC.
- 02/01/00 Start Temodar, AMC, Dr. SWeaver.
- 04/05/00 MRI, AMC
- 06/06/00 MRI, AMC, after 4 cycles of Temodar. Shows tumor regrowth.
- 06/14/00 Thalium spectroscan, AMC.
- 06/26/00 MRI, AMC, planning for radiosurgery.
- 06/27/00 Steriotactic radiosurgery, AMC, Dr. VKing and Dr. JEmerich.
- 07/06/00 Dr. SWeaver goes on maternity leave. Dr. VKing covering.
- 07/10/00 Start Tamoxifen (200 mg/day), AMC, Dr SWeaver/VKing.
- 08/14/00 MRI, AMC.
- 10/16/00 MRI, AMC.
- 10/23/00 Superficial clots in left leg, AMC emergency room, develops tremor and fever while there, admitted. Diagnosis: Increased edema in brain, probable tumor regrowth, taken off Tamoxifen, put on Dexamethasone. Note - all his doctors are at symposiums all week.
- 10/25/00 Thalium spectroscan, AMC.
- 10/27/00 Discharged from AMC.
- 11/02/00 Regular doctors reexamine scans. Tumor has not increased in diameter, "may" be growing into surgical cavity. Put back on Tamoxifen.
- 11/09/00 Greenfield filter implanted, inferior vena cava. Pre-procedure tests again show missing right kidney, and left kidney enlarged, with funnel-shaped "mega-ureter" (which totally freaked out the short-coats until the long-coats arrived).
- 11/27/00 "Left-side neglect" begins. He doesn't recognize his left side, can't put pants, coats, etc. on.
- 12/18/00 MRI, AMC, tumor is apparently growing, increasing edema. Carboplaten is offered, but we reject it because the side effects are so bad.
- 01/03/01 Sign up for immunotherapy trial at Nalitt Cancer Center, Staten Island, Dr. SPannullo.
- 01/10/01 Craniotomy, Staten Island University Hospital, very wide excision, Ommaya reservoir implanted. Post surgical - severe left-side neglect, paralysis, psychosis, DVT both legs, visual disturbances, low sodium & hematocrit, etc. Pathology report shows some tumor excised, but apparently mostly necrosis.
[Editorial - At this point I was extremely angry. This surgery damaged him terribly. They removed at lot of healthy material. When the doctors at AMC, SIUH, and Nalitt looked at the scans, they couldn't tell the difference between tumor and necrosis, which is not unusual. But Jay had no midline deviation, and the brain sinuses were normal. We begged for a PET scan, which could tell whether the mass was active or necrotic, but neither AMC nor SIUH had the facility, although competing hospitals did, and no one would write the order. It looks to me like the Tamoxifen was working, hence all the necrosis, and this degree of extremely damaging surgery was unnecessary had we known it was necrosis. In addition, his care at SIUH was extremely poor, uncaring. When he was discharged, I had to promise him he never ever had to go back there again.]
- 01/12/01 MRI, SIUH, post-surgical.
- 01/24/01 Xfer by ambulance from SIUH to Sunnyview Rehabilitation Hospital, Schenectady.
- 02/07/01 Discharge from Sunnyview (an excellent facility, BTW). Can now walk with walker with constant verbal cueing.
- 02/08/01 To Nalitt to begin immunotherapy, Dr. RHayes. White cells collected.
- 02/12/01 Infusion of treated white cells and IL-2 into tumor bed, through the Ommaya reservoir. To continue three times a week, MWF, six infusions per cycle.
- 02/16/01 Third infusion. Jay is getting weaker, losing remaining control of left side. After third infusion and 2.5 hour drive back home, he can no longer walk. EMTs called to get him from car to bed. Subsequent infusions cancelled. Much mental confusion, cannot feed self.
- 02/23/01 MRI, ND Hospital. Shows edema throughout right hemisphere, severe mid-line deviation. Projectile vomiting begins.
- 03/06/01 Focal seizures. Visual disturbances increasing. Delusions and hallucinations. Can no longer sit at side of bed or transfer safely to wheelchair, even with assistance. Periods of no response to any stimulus.
- 03/12/01 Vomiting partially controlled. Some mental confusion, but more responsive.
- 03/xx/01 Dr. SPannullo posits that Jay had an extreme reaction to the white cells, and that a reduced amount on infusion may be better tolerated. Because he cannot withstand the 5 hour round trip three times a week for infusion, we decide to move him to a nursing home in Staten Island, closer to the cancer center, for the duration of treatments.
The nursing home was an awful experience. The place was a hellhole, right from day one. I kept a more detailed diary on that place, and seriously considered a lawsuit - except that they kept removing pages from his records, and "correcting" records, and would not make copies, and so I ended up with blessed little hard documentation.
That's another entry.
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1034 Memory Aid?
Monday, December 25, 2006
Chris, of "Inane thoughts and insane ramblings", wrote some thoughts yesterday (which I read today) on memory, and how accessing a memory can change it.
It's a coincidence that I've been cleaning out the den, and have been finding "memories" that I want to preserve. The next two entries are excerpts from hardcopy journals I kept during Jay's illness. I'm "dumping" them here to preserve it all. It's stuff I don't want to lose or forget. Unless you have lots of free time, and a morbid interest in medical matters, I suggest you skip them. But if Daughter ever wants to put me in a nursing home, I want her to read about the Hellhole first. (Yes, there are good skilled nursing facilities out there - Sunnyview in Schenectady being one of the best. But then there are also hellholes.)
I have always kept notes on events, because as Chris points out, memories change. I am very suspicious of my memory. I review notes occasionally, because (it's just me) I think it's important that facts remain facts. The feelings about those facts do change over time, and that's ok, but for me, the facts must remain facts. And even though my feelings may change, the feelings I had at the time are part of the event, part of the facts, and should be preserved as a fact, even though I no longer have that feeling. Hence preservation of notes.
.
Chris, of "Inane thoughts and insane ramblings", wrote some thoughts yesterday (which I read today) on memory, and how accessing a memory can change it.
It's a coincidence that I've been cleaning out the den, and have been finding "memories" that I want to preserve. The next two entries are excerpts from hardcopy journals I kept during Jay's illness. I'm "dumping" them here to preserve it all. It's stuff I don't want to lose or forget. Unless you have lots of free time, and a morbid interest in medical matters, I suggest you skip them. But if Daughter ever wants to put me in a nursing home, I want her to read about the Hellhole first. (Yes, there are good skilled nursing facilities out there - Sunnyview in Schenectady being one of the best. But then there are also hellholes.)
I have always kept notes on events, because as Chris points out, memories change. I am very suspicious of my memory. I review notes occasionally, because (it's just me) I think it's important that facts remain facts. The feelings about those facts do change over time, and that's ok, but for me, the facts must remain facts. And even though my feelings may change, the feelings I had at the time are part of the event, part of the facts, and should be preserved as a fact, even though I no longer have that feeling. Hence preservation of notes.
.
1033 Gifts
Monday, December 25, 2006
I feel like just because of the date up there I'm supposed to say "Merry Christmas". Of course, being me, I'm rebelling. The particular date is not especially significant. I don't want to wish people a merry Christmas, because Christmas has been hijacked. Instead, if you are Christian, I hope that today you will think not of the birth, but will reflect on the life and the teachings, and what those teachings mean to your life. Giving gifts to close acquaintances on one day is ok if that makes you (and them) happy, but the real lesson is generosity of the spirit toward everyone, every day, all year. I wish you renewed personal dedication to spiritual generosity.
For my Jewish friends, I hope that the past Hanukkah has reminded you of your strength of community and the reserves of power in each individual. I wish you renewed resolve.
For my Muslim friends, I celebrate the renewal of community and charity exemplified by Eid.
For my Pagan and "other" friends, Yule represents renewal in all - the return of the sun and the rebirth of the earth (well, the northern hemisphere, anyway). I wish you all renewed energy and vitality.
Those are my gifts for today - gifts I can't give, but which you are free to take.
.
I feel like just because of the date up there I'm supposed to say "Merry Christmas". Of course, being me, I'm rebelling. The particular date is not especially significant. I don't want to wish people a merry Christmas, because Christmas has been hijacked. Instead, if you are Christian, I hope that today you will think not of the birth, but will reflect on the life and the teachings, and what those teachings mean to your life. Giving gifts to close acquaintances on one day is ok if that makes you (and them) happy, but the real lesson is generosity of the spirit toward everyone, every day, all year. I wish you renewed personal dedication to spiritual generosity.
For my Jewish friends, I hope that the past Hanukkah has reminded you of your strength of community and the reserves of power in each individual. I wish you renewed resolve.
For my Muslim friends, I celebrate the renewal of community and charity exemplified by Eid.
For my Pagan and "other" friends, Yule represents renewal in all - the return of the sun and the rebirth of the earth (well, the northern hemisphere, anyway). I wish you all renewed energy and vitality.
Those are my gifts for today - gifts I can't give, but which you are free to take.
.
Sunday, December 24, 2006
1032 Clicking the Remote
Saturday, December 24, 2006
Flipping around the wasteland of the six channels available to one without cable, on Christmas Eve afternoon. Everything is either Christmas-themed or sports.
Seen in passing:
On PBS there were bell-ringers, fourteen or so of them playing some complicated classical music. In front of the U-shaped table of bells and ringers, there was a conductor, in tux, energetically waving his baton and generally acting like he was personally making the music.
What amused me was that the ringers were frantically glancing from the sheet music to their arrays of bells, and not one of them so much as glanced in the conductor's direction. I stopped there and watched for a while, to see if any looked up, and none did through two full selections.
I can listen to bells, I dearly love carillons, but I can't watch these groups. They look like one-armed paper-hangers, and they get me all tensed up.
I clicked into the middle of "Nicholas Nickelby", and found Nathan Lane. With apologies to any NL fans, I really can't stand the man as a (non-stage) actor. I have never seen him in any movie or TV sitcom (starring or guest appearance) where I was not painfully aware he was acting. Contrast him with, say, Dustin Hoffman, who completely becomes his character. Nathan Lane will ruin anything for me faster than Liz Taylor - who also acted like she was playing the part of an actor acting.
Another flip found a piece on "green products". There's apparently a public school in or near Albany that has committed to use only environmentally safe products throughout the building, from building materials to cleaning products. However, they have to make an exception for floor finishes. There are "green" floor finishing products out there, but they "don't stand the test of time". They go down safely, but they need to be reapplied more often, resulting in buildup that needs to be removed much more often, and removal results in harmful dust. I thought that was an interesting point, given how serious they seemed to be about the "green" project.
Flip. "It's a Wonderful Life". Ack! Flip flip flip!
.
Flipping around the wasteland of the six channels available to one without cable, on Christmas Eve afternoon. Everything is either Christmas-themed or sports.
Seen in passing:
On PBS there were bell-ringers, fourteen or so of them playing some complicated classical music. In front of the U-shaped table of bells and ringers, there was a conductor, in tux, energetically waving his baton and generally acting like he was personally making the music.
What amused me was that the ringers were frantically glancing from the sheet music to their arrays of bells, and not one of them so much as glanced in the conductor's direction. I stopped there and watched for a while, to see if any looked up, and none did through two full selections.
I can listen to bells, I dearly love carillons, but I can't watch these groups. They look like one-armed paper-hangers, and they get me all tensed up.
I clicked into the middle of "Nicholas Nickelby", and found Nathan Lane. With apologies to any NL fans, I really can't stand the man as a (non-stage) actor. I have never seen him in any movie or TV sitcom (starring or guest appearance) where I was not painfully aware he was acting. Contrast him with, say, Dustin Hoffman, who completely becomes his character. Nathan Lane will ruin anything for me faster than Liz Taylor - who also acted like she was playing the part of an actor acting.
Another flip found a piece on "green products". There's apparently a public school in or near Albany that has committed to use only environmentally safe products throughout the building, from building materials to cleaning products. However, they have to make an exception for floor finishes. There are "green" floor finishing products out there, but they "don't stand the test of time". They go down safely, but they need to be reapplied more often, resulting in buildup that needs to be removed much more often, and removal results in harmful dust. I thought that was an interesting point, given how serious they seemed to be about the "green" project.
Flip. "It's a Wonderful Life". Ack! Flip flip flip!
.
1031 More on Hard Disk Clutter
Sunday, December 24, 2006
My "for Dummies" book says Windows' temporary files usually but not always end with ".TMP", and the file names usually start with "~". However, they say absolutely nothing about whether one can safely delete them. Then I found this through HowThingsWork.com, at http://filext.com/info/showthread.php?t=16:
Can I Delete Temporary (.TMP) Files?
My "for Dummies" book says Windows' temporary files usually but not always end with ".TMP", and the file names usually start with "~". However, they say absolutely nothing about whether one can safely delete them. Then I found this through HowThingsWork.com, at http://filext.com/info/showthread.php?t=16:
Can I Delete Temporary (.TMP) Files? Can I safely delete temporary (.TMP) files?
Maybe
.
Temporary files are just that, designed to be temporary. But, that does not always mean you can safely delete them. A running program, for example, may have created a temporary file that, if deleted, could cause problems for that program. Windows is an example of this; it creates temporary files that are used during any given session. While it usually recovers and recreates files it finds deleted, that is not always the case.
Consider the following as guidelines but not guarantees (make certain the file is actually a temporary file and not some critical data file with a .TMP extension): [Silk: and exactly how does one determine that?]
Maybe
.Temporary files are just that, designed to be temporary. But, that does not always mean you can safely delete them. A running program, for example, may have created a temporary file that, if deleted, could cause problems for that program. Windows is an example of this; it creates temporary files that are used during any given session. While it usually recovers and recreates files it finds deleted, that is not always the case.
Consider the following as guidelines but not guarantees (make certain the file is actually a temporary file and not some critical data file with a .TMP extension): [Silk: and exactly how does one determine that?]
- If the .TMP file date is earlier than the last time the computer was started and the file size is zero bytes it's almost always safe to delete the file. [Silk: Duh, yeah. That means there's no file. It's just a "placeholder" in a directory.] [Uh, "almost always"?]
- If the .TMP file date is earlier than the last time the comptuer was started its usually safe to delete the file. [Silk: Usually?]
- Everything else depends on the situation. [Silk: Aaaaggghhh!]
__________________
Tom
---------------------
DaBoss at FILExt.com
Very helpful, folks! Bleck!
A commenter has recommended Webroot's "Window Washer". I have a copy of it right here on my desk, along with Webroot's "Cache and Cookie Washer". I bought them at the local office supply store in January of 2002. The first time I ran Window Washer, it crashed Windows 98SE and completely destroyed AOL, and it took three IPLs before Windows would come up again. I was never able to recover that level of AOL, and had to install a new version - which for some reason couldn't find the old mail folders, so I lost all the emails to Jay's sisters from when he was sick, which was essentially the entire diary of Jay's treatments, reactions, feelings, and progress. (That made me cry.)
Ya gotta give me credit for courage - I ran it again a few days later, and Windows crashed again. So now I'm afraid to use it. (Although maybe the old version had some bugs which have since been fixed?)
.
Tom
---------------------
DaBoss at FILExt.com
Very helpful, folks! Bleck!
A commenter has recommended Webroot's "Window Washer". I have a copy of it right here on my desk, along with Webroot's "Cache and Cookie Washer". I bought them at the local office supply store in January of 2002. The first time I ran Window Washer, it crashed Windows 98SE and completely destroyed AOL, and it took three IPLs before Windows would come up again. I was never able to recover that level of AOL, and had to install a new version - which for some reason couldn't find the old mail folders, so I lost all the emails to Jay's sisters from when he was sick, which was essentially the entire diary of Jay's treatments, reactions, feelings, and progress. (That made me cry.)
Ya gotta give me credit for courage - I ran it again a few days later, and Windows crashed again. So now I'm afraid to use it. (Although maybe the old version had some bugs which have since been fixed?)
.
1030 Photos - the Machine, the Hunk, and Me
Sunday, December 24, 2006
Sometime in November I mentioned that the Hairless Hunk had taught me how to operate his ... I'm not entirely sure what to properly call it.
Backhoe?
Frontloader?
Marvelous Machine?
Man Toy?
The whole experience began when I was watching him tear out some stumps, and remarked that "I love to watch a man play with his toys." He offered to share his toys.
I really enjoyed it, and I got pretty fast and accurate.
This is The Hairless Hunk. He's laughing because as I was snapping the picture, I told him it wasn't going to be a very satisfactory photo. He asked why not, and I answered, "Because you have a shirt on."
He spends the whole summer in my yard shirtless, and THAT'S the picture I want. I'm almost sorry he's laughing, because it closed his pretty blue eyes. (Ok, Lady Chatterly has a crush on the groundskeeper. Big deal. I know not to touch. Looking is not only permitted, it's good for me.)
.
Sometime in November I mentioned that the Hairless Hunk had taught me how to operate his ... I'm not entirely sure what to properly call it.
Backhoe?
Frontloader?
Marvelous Machine?
Man Toy?
The whole experience began when I was watching him tear out some stumps, and remarked that "I love to watch a man play with his toys." He offered to share his toys.
I really enjoyed it, and I got pretty fast and accurate.
This is The Hairless Hunk. He's laughing because as I was snapping the picture, I told him it wasn't going to be a very satisfactory photo. He asked why not, and I answered, "Because you have a shirt on."
He spends the whole summer in my yard shirtless, and THAT'S the picture I want. I'm almost sorry he's laughing, because it closed his pretty blue eyes. (Ok, Lady Chatterly has a crush on the groundskeeper. Big deal. I know not to touch. Looking is not only permitted, it's good for me.)
.
1029 Photos from Last Weekend
Sunday, December 24, 2006
I have a digital camera. I don't use it for a variety of reasons, not the least of which is that the USB port on Matilda no longer works. So I wait until I've filled a roll on the antique 35mm camera, then I take it in and get prints and a CD.
So, finally, here are some pictures from last weekend's work on the disabled Vet's house.
The huge hole in the roof was to the right of the men on the roof, where you can see plywood. They reinforced the joists, replaced the shingles on the entire roof, and built the sloping roof over the ell, which originally had a flat roof. They also repaired/replaced water-damaged walls, floors, and ceilings, and we emptied out the stuff in the basement. The water damage in the basement was more due to freeze-burst pipes, which were also repaired.
Many of the guys working on the house were ex-Marines. They put up the flagpole, and the red flag is a Marine Corps flag. You can see the dumpster I helped fill. (We needed two of them!) The plywood showing in the lower left corner was shielding the bonfire, where we burned dead tree branches and scrap wood.
I had to get a picture of this truck. It was the personal property of one of the volunteers. Note the piece of log in the front --- they cut down a dead black walnut tree. It was beautiful wood, smelled wonderful, but the son couldn't find anyone who wanted it! We burned the smaller branches on the bonfire, and neighbors took the smaller trunk pieces for firewood, but the huge main trunk got pushed into the woods across the street, and will probably go to waste. A shame.
People have asked, "How did the homeowner react when he saw what had been done?"
No idea. Nobody but his son was to be there when he got home. All he knew was that his son and one or two of his son's friends were going to fix the hole in the roof, and that's all he'll ever know. He's very proud, and would not have accepted any other help.
That's why I said we were elves.
.
I have a digital camera. I don't use it for a variety of reasons, not the least of which is that the USB port on Matilda no longer works. So I wait until I've filled a roll on the antique 35mm camera, then I take it in and get prints and a CD.
So, finally, here are some pictures from last weekend's work on the disabled Vet's house.
The huge hole in the roof was to the right of the men on the roof, where you can see plywood. They reinforced the joists, replaced the shingles on the entire roof, and built the sloping roof over the ell, which originally had a flat roof. They also repaired/replaced water-damaged walls, floors, and ceilings, and we emptied out the stuff in the basement. The water damage in the basement was more due to freeze-burst pipes, which were also repaired.
Many of the guys working on the house were ex-Marines. They put up the flagpole, and the red flag is a Marine Corps flag. You can see the dumpster I helped fill. (We needed two of them!) The plywood showing in the lower left corner was shielding the bonfire, where we burned dead tree branches and scrap wood.
I had to get a picture of this truck. It was the personal property of one of the volunteers. Note the piece of log in the front --- they cut down a dead black walnut tree. It was beautiful wood, smelled wonderful, but the son couldn't find anyone who wanted it! We burned the smaller branches on the bonfire, and neighbors took the smaller trunk pieces for firewood, but the huge main trunk got pushed into the woods across the street, and will probably go to waste. A shame.
People have asked, "How did the homeowner react when he saw what had been done?"
No idea. Nobody but his son was to be there when he got home. All he knew was that his son and one or two of his son's friends were going to fix the hole in the roof, and that's all he'll ever know. He's very proud, and would not have accepted any other help.
That's why I said we were elves.
.
Saturday, December 23, 2006
1028 Hard Disk Horror
Saturday, December 23, 2006
I've been uploading photos from my hard disk to Flickr.com, and yesterday I decided to look for other photos that maybe didn't make it into my "Photos" folder. So I did a "Find" for "*.jpg". The results were shocking. There were pictures out there from practically every product, every website, every banner ad, every online dating guy's profile, everything I'd looked at for literally years!
I do a disk cleanup every few days, and it says it's cleaning up temporary internet files, but that doesn't include a LOT of other temporary internet stuff out there. Like the cache. There was six-year-old stuff in the caches, probably left when the browsers bounce (one to five times a day these days).
About twice or more a week I have to push the "off/on" button because the system hangs, and every time I do that, Windows leaves temp stuff, and it never cleans it up! Would that be so difficult? If Windows expects me to recognize what should be deleted, then Windows ought to be able to identify it. Sheesh.
I also discovered that every time I download a photo from an email into my "photos" file, AOL plants another copy of the same picture in any one of at least three other places.
It's no wonder my hard disk is so cluttered I can't defragment it any more.
I have a copy of "Windows 98 for Dummies", but under "temporary files" and how to identify them and how to get rid of them, it says almost nothing.
Anybody have any ideas as to what I should do? (This is Windows 98 SE. What's "Explorer"?) I won't be ready to buy another system for another few months. I'd really like to clean this one up.
--------------------------------------
Complicating factors - The hard disk is partitioned. I believe there's a total of at least 9G available (Jay hand-built much of this beast, 11 years ago). There's a 2G C-Disk containing all the system and application software. There's a 2G D-Disk containing data files, like photos, music, some documents, etc. That leaves 5G more, which I believe are a E-Disk and F-Disk, but they are hidden! You can't get the system to admit they exist under any query. Jay created them to hold proprietary information that he was working on for The Company and for the clients of a partnership he was working with. I know there's a lot of sensitive (well, sensitive six years ago) information out there, and I'd love to kill it all and get that disk space back, but I can't. Worse, this disk arrangement makes it almost impossible to build any kind of rescue disk.
It's scary.
.
I've been uploading photos from my hard disk to Flickr.com, and yesterday I decided to look for other photos that maybe didn't make it into my "Photos" folder. So I did a "Find" for "*.jpg". The results were shocking. There were pictures out there from practically every product, every website, every banner ad, every online dating guy's profile, everything I'd looked at for literally years!
I do a disk cleanup every few days, and it says it's cleaning up temporary internet files, but that doesn't include a LOT of other temporary internet stuff out there. Like the cache. There was six-year-old stuff in the caches, probably left when the browsers bounce (one to five times a day these days).
About twice or more a week I have to push the "off/on" button because the system hangs, and every time I do that, Windows leaves temp stuff, and it never cleans it up! Would that be so difficult? If Windows expects me to recognize what should be deleted, then Windows ought to be able to identify it. Sheesh.
I also discovered that every time I download a photo from an email into my "photos" file, AOL plants another copy of the same picture in any one of at least three other places.
It's no wonder my hard disk is so cluttered I can't defragment it any more.
I have a copy of "Windows 98 for Dummies", but under "temporary files" and how to identify them and how to get rid of them, it says almost nothing.
Anybody have any ideas as to what I should do? (This is Windows 98 SE. What's "Explorer"?) I won't be ready to buy another system for another few months. I'd really like to clean this one up.
--------------------------------------
Complicating factors - The hard disk is partitioned. I believe there's a total of at least 9G available (Jay hand-built much of this beast, 11 years ago). There's a 2G C-Disk containing all the system and application software. There's a 2G D-Disk containing data files, like photos, music, some documents, etc. That leaves 5G more, which I believe are a E-Disk and F-Disk, but they are hidden! You can't get the system to admit they exist under any query. Jay created them to hold proprietary information that he was working on for The Company and for the clients of a partnership he was working with. I know there's a lot of sensitive (well, sensitive six years ago) information out there, and I'd love to kill it all and get that disk space back, but I can't. Worse, this disk arrangement makes it almost impossible to build any kind of rescue disk.
It's scary.
.
Friday, December 22, 2006
1027 Ditzy Dinner
Friday, December 22, 2006
Last night I went to the monthly Third Thursday dinner. There was only Roman, me, and The Ditz (I've mentioned her before). She really got to me last night. The woman doesn't have an ounce of common sense.
Now, I'm usually pretty easy to get along with. There are a lot of people who annoy me in one way or another, but I just accept that as a part of them. It's often the result of some kind of emotional need, so I just let it pass over me or work around it. I'm pleasant to them, no matter how annoyed I am.
But last night, as the dinner went on, I got more and more impatient with The Ditz. The final straw came when she said (again, she's said it before at these dinners) that she doesn't understand why they don't end the Iraqi war the same way they ended WWII - "just drop an atom [sic] bomb on Iraq."
I told Roman later that I slammed my mouth shut and waited for him to respond, and I'd follow his lead. He said that there are many good reasons why not, and listed some. My first impulse was to ask her how the hell she got into Mensa, and tell her "that's about the stupidest statement I'd ever heard, bar none", but Roman's patience cooled me down.
She has said the same thing at earlier dinners, and people have explained to her over and over why that's such a bad idea, and yet she persists in thinking it's a good idea. Like she doesn't listen, or doesn't think.
She's not only stupid, she's insensitive. She knows that Roman and I have been "involved", and she asks incredibly uncomfortable questions. She gets short answers, or redirected, but then she comes right back to it.
The woman has zero common sense.
I really really don't want to deal with her ever again. She doesn't come to these dinners often, thank goodness, and next time she does, I'm not going to hold back. I'm going to make her afraid to ever again open her mouth within a mile of me. I told Roman, if she says stuff like that to us, she must be saying it other places, to other people, too. I'd like to follow her around for a day just to find out why no one has strangled her yet.
He cracked up.
One significant thing, in all the time I've known him, Roman has never used a "naughty" word, not even "darn". Last night, in responding to The Ditz, regarding dropping the bomb, he actually dropped the "F" bomb, in all its purity. I was amazed!
Eventually she left, and Roman and I stayed at the table for a while to talk. We were about ready to leave when Roman said, "Hey, there goes Bob." Bob was a coworker of ours 15 years ago. He was sitting alone, so we joined him - for almost an hour. Bob and Roman both have elderly parents in need of care, so they had a lot to talk about.
And then we left.
Last night I went to the monthly Third Thursday dinner. There was only Roman, me, and The Ditz (I've mentioned her before). She really got to me last night. The woman doesn't have an ounce of common sense.
Now, I'm usually pretty easy to get along with. There are a lot of people who annoy me in one way or another, but I just accept that as a part of them. It's often the result of some kind of emotional need, so I just let it pass over me or work around it. I'm pleasant to them, no matter how annoyed I am.
But last night, as the dinner went on, I got more and more impatient with The Ditz. The final straw came when she said (again, she's said it before at these dinners) that she doesn't understand why they don't end the Iraqi war the same way they ended WWII - "just drop an atom [sic] bomb on Iraq."
I told Roman later that I slammed my mouth shut and waited for him to respond, and I'd follow his lead. He said that there are many good reasons why not, and listed some. My first impulse was to ask her how the hell she got into Mensa, and tell her "that's about the stupidest statement I'd ever heard, bar none", but Roman's patience cooled me down.
She has said the same thing at earlier dinners, and people have explained to her over and over why that's such a bad idea, and yet she persists in thinking it's a good idea. Like she doesn't listen, or doesn't think.
She's not only stupid, she's insensitive. She knows that Roman and I have been "involved", and she asks incredibly uncomfortable questions. She gets short answers, or redirected, but then she comes right back to it.
The woman has zero common sense.
I really really don't want to deal with her ever again. She doesn't come to these dinners often, thank goodness, and next time she does, I'm not going to hold back. I'm going to make her afraid to ever again open her mouth within a mile of me. I told Roman, if she says stuff like that to us, she must be saying it other places, to other people, too. I'd like to follow her around for a day just to find out why no one has strangled her yet.
He cracked up.
One significant thing, in all the time I've known him, Roman has never used a "naughty" word, not even "darn". Last night, in responding to The Ditz, regarding dropping the bomb, he actually dropped the "F" bomb, in all its purity. I was amazed!
Eventually she left, and Roman and I stayed at the table for a while to talk. We were about ready to leave when Roman said, "Hey, there goes Bob." Bob was a coworker of ours 15 years ago. He was sitting alone, so we joined him - for almost an hour. Bob and Roman both have elderly parents in need of care, so they had a lot to talk about.
And then we left.
Thursday, December 21, 2006
1026 Send Milk!
Help! I'm buried under an avalanche of peanut butter cookies!
(- a result of the note I sent to friends and family back in November. Next year I'll know better.)
.
(- a result of the note I sent to friends and family back in November. Next year I'll know better.)
.
Wednesday, December 20, 2006
1025 Mailbox
Wednesday, December 20, 2006
[Later Edit - The Hairless Hunk has a winch on his truck, not a wench. I'm surprised nobody caught that.]
I spent all day yesterday writing notes. I have old friends and coworkers scattered all over the country, and at Christmas I write them a (real, personal, handwritten, snail-mail, and very short) note. Then around the end of January, I get a real, handwritten, snail-mail response. And that's about it until the next year.
Email doesn't seem to work for us/me. I set an email aside, and then I seem to forget it wants a reply. I don't know why. Perhaps because it's too much contact for the kind of distance relationship that now remains. I guess we/I want to keep in touch, but not too touchy-feely. Or maybe it's my standoffishness. Whatever. I wish I could do better.
My mother always kept very closely in touch with practically everyone she'd ever met - and moving every three years, that was a lot. She always said that if she ever decided to drive across the country, she'd have a friend to visit every day. We spent three years in Ottawa, two in the house on Fairbanks Avenue, and forty years later, when she and our Fairbanks neighbor were both widows, the neighbor and she would spend a week together in Miami every year. I don't know how you maintain that kind of contact. She never taught me how.
-----------------------------------------
My neighbors across the street put their house up for sale last spring. In preparation, they moved a lot of their belongings into storage, and borrowed a utility trailer to do it. Their driveway is long and narrow, and unlike mine, there's no turn-around at the end, so after they filled the trailer, they had to back it up the drive.
My mailbox is right across from the end of their driveway, and I guess they weren't able to turn the trailer tight enough when they got to the end of their driveway (and apparently weren't watching, or listening, the sound would have been pretty loud), and they rammed my mailbox, twisting it off true, and badly bent the post for my newspaper tube. I didn't see it happen, but that morning the trailer was in their drive, and two hours later, the trailer was gone and the damage was done. The direction of the twist and the height of the bend say "trailer, from THAT direction". We are the last houses on a dead end street. There is NO other traffic.
I had to figure it out myself because nobody from across the street came over to apologize or offer to fix it. I didn't say anything either. The Hairless Hunk used a winch on his truck to twist the mailbox back for me, but we couldn't do anything about the newspaper tube. Now, to get my paper, I have to open the car door a little and hang out the window to reach it.
Well, the house sold a few weeks ago, and they moved out last week. This time I think it was a moving van that hit my mailbox. It's twisted so far I'm not sure it will twist back. I'm surprised I'm still getting my mail.
Again, no one said "Oops, sorry."
I probably won't be keeping in touch with them.
.
[Later Edit - The Hairless Hunk has a winch on his truck, not a wench. I'm surprised nobody caught that.]
I spent all day yesterday writing notes. I have old friends and coworkers scattered all over the country, and at Christmas I write them a (real, personal, handwritten, snail-mail, and very short) note. Then around the end of January, I get a real, handwritten, snail-mail response. And that's about it until the next year.
Email doesn't seem to work for us/me. I set an email aside, and then I seem to forget it wants a reply. I don't know why. Perhaps because it's too much contact for the kind of distance relationship that now remains. I guess we/I want to keep in touch, but not too touchy-feely. Or maybe it's my standoffishness. Whatever. I wish I could do better.
My mother always kept very closely in touch with practically everyone she'd ever met - and moving every three years, that was a lot. She always said that if she ever decided to drive across the country, she'd have a friend to visit every day. We spent three years in Ottawa, two in the house on Fairbanks Avenue, and forty years later, when she and our Fairbanks neighbor were both widows, the neighbor and she would spend a week together in Miami every year. I don't know how you maintain that kind of contact. She never taught me how.
-----------------------------------------
My neighbors across the street put their house up for sale last spring. In preparation, they moved a lot of their belongings into storage, and borrowed a utility trailer to do it. Their driveway is long and narrow, and unlike mine, there's no turn-around at the end, so after they filled the trailer, they had to back it up the drive.
My mailbox is right across from the end of their driveway, and I guess they weren't able to turn the trailer tight enough when they got to the end of their driveway (and apparently weren't watching, or listening, the sound would have been pretty loud), and they rammed my mailbox, twisting it off true, and badly bent the post for my newspaper tube. I didn't see it happen, but that morning the trailer was in their drive, and two hours later, the trailer was gone and the damage was done. The direction of the twist and the height of the bend say "trailer, from THAT direction". We are the last houses on a dead end street. There is NO other traffic.
I had to figure it out myself because nobody from across the street came over to apologize or offer to fix it. I didn't say anything either. The Hairless Hunk used a winch on his truck to twist the mailbox back for me, but we couldn't do anything about the newspaper tube. Now, to get my paper, I have to open the car door a little and hang out the window to reach it.
Well, the house sold a few weeks ago, and they moved out last week. This time I think it was a moving van that hit my mailbox. It's twisted so far I'm not sure it will twist back. I'm surprised I'm still getting my mail.
Again, no one said "Oops, sorry."
I probably won't be keeping in touch with them.
.
Monday, December 18, 2006
1024 A Regret
Monday, December 18, 2006
When I was little, when other kids wanted to be policemen, or cowboys, or veterinarians, or beauticians, I wanted to be a forensic pathologist. Most people, including my parents, didn't even know what that was. I read about it in a book in about fifth grade, and I knew right away that's what I wanted to do, what I was meant to do.
When I graduated from high school in 1962, I still wanted to be a forensic pathologist.
There were a whole heap of barriers.
I hated high school chemistry. What I didn't know then was that our chem teacher was very bad. He was the local veterinarian, had never had any teacher training, and ours was his first teaching experience. Small mountain school. Things might have been different with a decent teacher.
I didn't think I'd be going to college, didn't even apply until after graduation, and then to only one school, where "everyone" decided I should go, and where there was no track leading to anything medical.
Plus, by then I had learned my place as a female. Forensic pathologists, like police officers, surgeons, and anything else of any import, were male, and that was that. I was not emotionally strong enough at that time to attempt to buck the attitudes (although I majored in math, and was usually the only female in the math classes).
I think I would have been very good at it, I really do.
I sometimes wonder how different my life might have been.
.
When I was little, when other kids wanted to be policemen, or cowboys, or veterinarians, or beauticians, I wanted to be a forensic pathologist. Most people, including my parents, didn't even know what that was. I read about it in a book in about fifth grade, and I knew right away that's what I wanted to do, what I was meant to do.
When I graduated from high school in 1962, I still wanted to be a forensic pathologist.
There were a whole heap of barriers.
I hated high school chemistry. What I didn't know then was that our chem teacher was very bad. He was the local veterinarian, had never had any teacher training, and ours was his first teaching experience. Small mountain school. Things might have been different with a decent teacher.
I didn't think I'd be going to college, didn't even apply until after graduation, and then to only one school, where "everyone" decided I should go, and where there was no track leading to anything medical.
Plus, by then I had learned my place as a female. Forensic pathologists, like police officers, surgeons, and anything else of any import, were male, and that was that. I was not emotionally strong enough at that time to attempt to buck the attitudes (although I majored in math, and was usually the only female in the math classes).
I think I would have been very good at it, I really do.
I sometimes wonder how different my life might have been.
.
1023 Photo Badge
Monday, December 18, 2006
[Later edit - the photo badge doesn't show up unless you're on the main page. So if you come into a single entry, you won't see it. Tsk.]
I have added a Flickr "Badge" over there on the right. Look now, it may not be there long, because it makes the journal load a lot slower for me (12-year-old system on dial-up, and all that). But it's pretty nifty.
.
[Later edit - the photo badge doesn't show up unless you're on the main page. So if you come into a single entry, you won't see it. Tsk.]
I have added a Flickr "Badge" over there on the right. Look now, it may not be there long, because it makes the journal load a lot slower for me (12-year-old system on dial-up, and all that). But it's pretty nifty.
.
1022 Snowflake
[Later edit - changed the link. "snowflakeslookandfeel" has become all ads. (Caught like a fish on a hook.) The link now goes to the real snowflake maker.]
I made a snowflake, at snowflakes.beap.com.
I made a snowflake, at snowflakes.beap.com.
Sunday, December 17, 2006
1021 Generic Title
Sunday, December 17, 2006
One more commercial complaint - the Dunkin' Donuts commercial in which people at the "other" coffee shops complain about about being forced to order in French, or Italian, or Fretalian, but at Dunkin' Donuts, "you can order your latte completely in English". Are they really unaware that "latte" is not English? Aaaarrgh! Not being a coffee drinker, I'm not even sure what "latte" means. Isn't that like "coffee with milk"?
I went to work at the veteran's house again today. I half expected my back to be iffy this morning, but it was fine. My thighs were something else, though. They were screaming "Please don't do this to me again!" but I told them to shut up, it's good for you, and tonight they even feel good.
The men were burning the branches from the dead black walnut tree they had cut down, and the wood scraps from the construction. Being a bit of a pyromaniac, I was happy to take over the care and feeding of the bonfire. They had also replaced the toilet, and the plumber had been and gone before I got there, but by the end of the day, there was still no water. I guess the burst pipes (freeze damage) were most extensive than first thought.
They sent me to the hardware store to buy more roofing nails, and a second trip to Wal*Mart to buy venetian blinds, a shower curtain bar, a monster tarp, and bungee cords. That trip was a horror. I had to weave through the parking lot for 15 minutes before I got a parking spot, and the lines at the checkout were a horror.
I got thoroughly smoked. My hair turned gray-green from the bonfire smoke, and it felt stiff and pasty. When I got home I soaked in the tub and washed my hair, but my hair still has a slightly off color. I've got black in my pores, and I'm still digging soot out of my nose. Getting clean may take a while. (Now I remember another reason I dislike camping.)
I was so full of energy when I got home, I decided to find out why the bathtub in the hall bathroom drains so slowly. I took the works apart, and found that it wasn't just a water salts deposit problem, and not just a hair problem, it was both. I have extremely hard water, and water evaporation on the bits of hair in there had created a solid salt dam, about a quarter inch thick. Acid didn't touch it. I had to chip it apart. But now the tub drains.
I am content.
.
One more commercial complaint - the Dunkin' Donuts commercial in which people at the "other" coffee shops complain about about being forced to order in French, or Italian, or Fretalian, but at Dunkin' Donuts, "you can order your latte completely in English". Are they really unaware that "latte" is not English? Aaaarrgh! Not being a coffee drinker, I'm not even sure what "latte" means. Isn't that like "coffee with milk"?
I went to work at the veteran's house again today. I half expected my back to be iffy this morning, but it was fine. My thighs were something else, though. They were screaming "Please don't do this to me again!" but I told them to shut up, it's good for you, and tonight they even feel good.
The men were burning the branches from the dead black walnut tree they had cut down, and the wood scraps from the construction. Being a bit of a pyromaniac, I was happy to take over the care and feeding of the bonfire. They had also replaced the toilet, and the plumber had been and gone before I got there, but by the end of the day, there was still no water. I guess the burst pipes (freeze damage) were most extensive than first thought.
They sent me to the hardware store to buy more roofing nails, and a second trip to Wal*Mart to buy venetian blinds, a shower curtain bar, a monster tarp, and bungee cords. That trip was a horror. I had to weave through the parking lot for 15 minutes before I got a parking spot, and the lines at the checkout were a horror.
I got thoroughly smoked. My hair turned gray-green from the bonfire smoke, and it felt stiff and pasty. When I got home I soaked in the tub and washed my hair, but my hair still has a slightly off color. I've got black in my pores, and I'm still digging soot out of my nose. Getting clean may take a while. (Now I remember another reason I dislike camping.)
I was so full of energy when I got home, I decided to find out why the bathtub in the hall bathroom drains so slowly. I took the works apart, and found that it wasn't just a water salts deposit problem, and not just a hair problem, it was both. I have extremely hard water, and water evaporation on the bits of hair in there had created a solid salt dam, about a quarter inch thick. Acid didn't touch it. I had to chip it apart. But now the tub drains.
I am content.
.
Saturday, December 16, 2006
1020 Elf, or Smurfette?
Saturday, December 16, 2006
I helped out at the veteran's house today. It was a beautiful day, sunny and warm, perfect for working on a roof.
There were like 15 men (mostly Viet Nam era ex-Marines), and me. I've worked with all-males groups before, and I know one small woman can crimp their style quite a lot. There's a tension, because they feel like they have to curb their language, and I could feel it there today. One guy was using a nail gun on the roof and it quit nailing, so he asked someone to check the compressor, and when that proved ok, he checked the gun and determined that there was a hole in the diaphragm, so there was no pressure. He looked up and asked in general, "So, what's it mean when there's a hole in my diaphragm?" Which question was met with an uncomfortable deadly silence. I knew it was up to me to loosen them up, so I shouted back, "It means you're really screwed!" They all laughed very loudly, and although they continued to watch their language (thank you, gentlemen), the tension was gone.
There were three major efforts - replacing a portion of the roof and reshingling the whole roof, replacing the ceilings inside, and clearing out the basement. My job was mostly clearing up. I gathered up old roof shingles that had been scraped to the ground, the wrappers and tapes from the new shingles, the old ceiling tiles, and junk the guys were removing from the basement, and put it all in the dumpster (which required climbing up and down on a stone wall). I also made several runs to the hardware store.
They knocked off when the light disappeared, at about 5 pm. At 6 pm, I was sitting on a Kingston city trolley bus taking a Rotary-sponsored tour of decorated houses. Very pretty. When the bus paused at an especially nice house, the driver honked the horn, and the homeowners came out onto the porch to wave and be waved at.
With all the bending and lifting today, and carrying and tossing heavy stuff, and then sitting for more than an hour on the slippery wooden seats of the trolley bus, I really thought my back would be hurting tonight. But it's not. It feels fine. My thighs know they've had a workout, but that actually feels good.
I'm going back tomorrow.
I helped out at the veteran's house today. It was a beautiful day, sunny and warm, perfect for working on a roof.
There were like 15 men (mostly Viet Nam era ex-Marines), and me. I've worked with all-males groups before, and I know one small woman can crimp their style quite a lot. There's a tension, because they feel like they have to curb their language, and I could feel it there today. One guy was using a nail gun on the roof and it quit nailing, so he asked someone to check the compressor, and when that proved ok, he checked the gun and determined that there was a hole in the diaphragm, so there was no pressure. He looked up and asked in general, "So, what's it mean when there's a hole in my diaphragm?" Which question was met with an uncomfortable deadly silence. I knew it was up to me to loosen them up, so I shouted back, "It means you're really screwed!" They all laughed very loudly, and although they continued to watch their language (thank you, gentlemen), the tension was gone.
There were three major efforts - replacing a portion of the roof and reshingling the whole roof, replacing the ceilings inside, and clearing out the basement. My job was mostly clearing up. I gathered up old roof shingles that had been scraped to the ground, the wrappers and tapes from the new shingles, the old ceiling tiles, and junk the guys were removing from the basement, and put it all in the dumpster (which required climbing up and down on a stone wall). I also made several runs to the hardware store.
They knocked off when the light disappeared, at about 5 pm. At 6 pm, I was sitting on a Kingston city trolley bus taking a Rotary-sponsored tour of decorated houses. Very pretty. When the bus paused at an especially nice house, the driver honked the horn, and the homeowners came out onto the porch to wave and be waved at.
With all the bending and lifting today, and carrying and tossing heavy stuff, and then sitting for more than an hour on the slippery wooden seats of the trolley bus, I really thought my back would be hurting tonight. But it's not. It feels fine. My thighs know they've had a workout, but that actually feels good.
I'm going back tomorrow.
Friday, December 15, 2006
1019 Augmenteth Thy Codpiece!
Friday, December 15, 2006
Commercials
Until recently I didn't understand people who were afraid of clowns. He's not exactly a clown, but the King in the Burger King commercials downright scares me. I know there's an ordinary person under that head, but that doesn't matter. If I saw just the head/mask sitting on a table it would scare me. Something about the expression on the face.
I'm very tired of Bob, the guy with the "something big in the neighborhood" (like the title of this entry). Partly it's his expression, too, and partly that his neighborhood and neighbors seem very suburban '50s. And the smirking double meanings. Annoying.
I like the Geico caveman commercials. I like the cavemen. Again, it's their expressions. The more I see them, the sexier I find them. I also like the parallel to feminism. Thirty-five years ago, Geico could have put up the same billboards, saying "So easy a woman could do it", and no one would have blinked twice. Women would have had and gotten the same reactions as the cavemen. It's like Geico is saying "We're running out of groups to put down", and I think that's funny.
The award for the most effective commercial has to go to "Head-On. Apply directly to the forehead. Head-On. Apply directly to the forehead." First off, you can't forget the name of the product. Best, it has become a joke. Every talk show has made fun of it. So for the price of a few seconds of commercial time, the product is getting hours of exposure.
The new PC pregnancy
Ok, I can understand the intent behind "We're pregnant." You want to include him. But I still don't like it. "We're expecting" maybe, but "he" isn't pregnant! I think it belittles the changes and discomforts she's going through.
Well, I sputtered at the TV the other night when Tori Spelling patted her round belly and said "...this little one inside of us." Us? Us? Inside of us? Wait 'til it has to come out, lady, and then tell me about "us".
Bah, humbug
I didn't go to the Christmas party this evening.
When I got home from dinner last night I fired off a e-note to the hostess asking for directions, and whether she'd like me to bring anything in particular. I decided that if I hadn't heard from the hostess by 5 pm, I wasn't going to go. There were several people I could have called for directions, but I decided not to. I decided to let Fate decide (because maybe I didn't really want to go after all).
I guess she doesn't check her email at work, because she didn't respond until almost 6 pm, and I found her note at 6:30. The party started at 7, and it would take me over two hours to get dressed, put together a munchy, and drive there. I didn't want to go late. With this bunch, it probably wouldn't go past 10 pm, if even that late.
(Yeah, I could have gotten washed, dressed, munchied, and gassed up earlier, but - more evidence that I didn't really want to. I helped Fate along a bit.)
.
Commercials
Until recently I didn't understand people who were afraid of clowns. He's not exactly a clown, but the King in the Burger King commercials downright scares me. I know there's an ordinary person under that head, but that doesn't matter. If I saw just the head/mask sitting on a table it would scare me. Something about the expression on the face.
I'm very tired of Bob, the guy with the "something big in the neighborhood" (like the title of this entry). Partly it's his expression, too, and partly that his neighborhood and neighbors seem very suburban '50s. And the smirking double meanings. Annoying.
I like the Geico caveman commercials. I like the cavemen. Again, it's their expressions. The more I see them, the sexier I find them. I also like the parallel to feminism. Thirty-five years ago, Geico could have put up the same billboards, saying "So easy a woman could do it", and no one would have blinked twice. Women would have had and gotten the same reactions as the cavemen. It's like Geico is saying "We're running out of groups to put down", and I think that's funny.
The award for the most effective commercial has to go to "Head-On. Apply directly to the forehead. Head-On. Apply directly to the forehead." First off, you can't forget the name of the product. Best, it has become a joke. Every talk show has made fun of it. So for the price of a few seconds of commercial time, the product is getting hours of exposure.
The new PC pregnancy
Ok, I can understand the intent behind "We're pregnant." You want to include him. But I still don't like it. "We're expecting" maybe, but "he" isn't pregnant! I think it belittles the changes and discomforts she's going through.
Well, I sputtered at the TV the other night when Tori Spelling patted her round belly and said "...this little one inside of us." Us? Us? Inside of us? Wait 'til it has to come out, lady, and then tell me about "us".
Bah, humbug
I didn't go to the Christmas party this evening.
When I got home from dinner last night I fired off a e-note to the hostess asking for directions, and whether she'd like me to bring anything in particular. I decided that if I hadn't heard from the hostess by 5 pm, I wasn't going to go. There were several people I could have called for directions, but I decided not to. I decided to let Fate decide (because maybe I didn't really want to go after all).
I guess she doesn't check her email at work, because she didn't respond until almost 6 pm, and I found her note at 6:30. The party started at 7, and it would take me over two hours to get dressed, put together a munchy, and drive there. I didn't want to go late. With this bunch, it probably wouldn't go past 10 pm, if even that late.
(Yeah, I could have gotten washed, dressed, munchied, and gassed up earlier, but - more evidence that I didn't really want to. I helped Fate along a bit.)
.
Thursday, December 14, 2006
1018 Stuff
Thursday, December 14, 2006
I went to a Mensa dinner tonight in Kingston. There were seven of us tonight, and it's weird, but all but one of my favorite people were there. I got talked into going to the Christmas party tomorrow (Friday) night. I hadn't planned to, but most of my favorite people will be there, so....
I distributed that list of Christmas carols on the Mensa Yahoo group, and got a few additions:
- Pyromania - "Christmas tree, O Christmas tree, how beautifully you're burning..."
- Paranoia was "Santa Claus is coming to town to get me". It was pointed out that could also be for (drum roll) claustrophobia. (Ta-da-rump!)
After he got home this evening, Roman sent me an email attachment of a video. I don't know how to put it in here, but the audio is at http://www.andrew.cmu.edu/user/haff/political/hu_sonfirst.mp3. It's funny. (You might be able to find the video on your own if you search for "hu_sonfirst.wmv".)
There's a Vietnam vet living near here in a house that's falling apart. A tree fell and punched a hole in the roof, and the walls have been water-damaged. In addition, there are some serious plumbing problems. The man's son lives downriver about an hour, and he's worried. The man has some health problems, and is too proud to accept help. So, the son has managed to convince his father to come for a short visit, and thereby vacate the house for a weekend, with the understanding that work will be done on the house while he's not there. That way, he doesn't have to "accept" help. It's like elves came and did it.
It's not a Habitat for Humanity project, but the guy organizing the work crew got permission to use the HfH volunteer email list (which I'm on), and I guess there are some veteran groups involved, too. So I called and said I'd be there. Even if all I do is stand at the bottom of a ladder and hand tools and materials up, that will help.
Piper is all upset that I'm not "into" Christmas. We almost got into a fight about it at lunch Wednesday. I'm willing to let him celebrate any way he wants, but I'm not willing to listen to a lecture on "the meaning of". First off, the "meaning" has been so distorted and embroidered, there's no meaning left. Second, if you can't live it every day, you shouldn't get all holy on one day. Besides, I think you have to be a Christian first, and I've decided that in all honesty, I'm not. Not the way Christians define it, anyway.
So, anyway, he has insisted that I join him and his lady at dinner at their favorite restaurant on Christmas Eve. I'm conflicted. I'd like to meet her, but I really truly don't want "saving". I'd be a lot happier if there was a larger group.
Hey, I'm an elf. That should be good enough.
.
I went to a Mensa dinner tonight in Kingston. There were seven of us tonight, and it's weird, but all but one of my favorite people were there. I got talked into going to the Christmas party tomorrow (Friday) night. I hadn't planned to, but most of my favorite people will be there, so....
I distributed that list of Christmas carols on the Mensa Yahoo group, and got a few additions:
- Pyromania - "Christmas tree, O Christmas tree, how beautifully you're burning..."
- Paranoia was "Santa Claus is coming to town to get me". It was pointed out that could also be for (drum roll) claustrophobia. (Ta-da-rump!)
After he got home this evening, Roman sent me an email attachment of a video. I don't know how to put it in here, but the audio is at http://www.andrew.cmu.edu/user/haff/political/hu_sonfirst.mp3. It's funny. (You might be able to find the video on your own if you search for "hu_sonfirst.wmv".)
There's a Vietnam vet living near here in a house that's falling apart. A tree fell and punched a hole in the roof, and the walls have been water-damaged. In addition, there are some serious plumbing problems. The man's son lives downriver about an hour, and he's worried. The man has some health problems, and is too proud to accept help. So, the son has managed to convince his father to come for a short visit, and thereby vacate the house for a weekend, with the understanding that work will be done on the house while he's not there. That way, he doesn't have to "accept" help. It's like elves came and did it.
It's not a Habitat for Humanity project, but the guy organizing the work crew got permission to use the HfH volunteer email list (which I'm on), and I guess there are some veteran groups involved, too. So I called and said I'd be there. Even if all I do is stand at the bottom of a ladder and hand tools and materials up, that will help.
Piper is all upset that I'm not "into" Christmas. We almost got into a fight about it at lunch Wednesday. I'm willing to let him celebrate any way he wants, but I'm not willing to listen to a lecture on "the meaning of". First off, the "meaning" has been so distorted and embroidered, there's no meaning left. Second, if you can't live it every day, you shouldn't get all holy on one day. Besides, I think you have to be a Christian first, and I've decided that in all honesty, I'm not. Not the way Christians define it, anyway.
So, anyway, he has insisted that I join him and his lady at dinner at their favorite restaurant on Christmas Eve. I'm conflicted. I'd like to meet her, but I really truly don't want "saving". I'd be a lot happier if there was a larger group.
Hey, I'm an elf. That should be good enough.
.
Wednesday, December 13, 2006
1017 Autism; Left-Handedness
Wednesday, December 13, 2006
I had lunch with Piper today. Before lunch we went over the financial picture. I'm not sure what he's built for me is exactly what I wanted - I wanted diversity, but I also require a certain income that I'm not sure is there. I guess my main problem is that I'm strongly averse to spending principal, I'm used to having interest and dividends to spend, and the way it's set up now I have to sell something to take money out, and that feels too much like spending principal. Actually, what I'd be spending is growth.
It's going to take some time until it stops scaring me. I'm trying very hard to be patient, but he can see I'm nervous. It must be the way my eyes and eyebrows get all big and worried when he runs numbers past me. At the same time, I have every confidence in him.
I just wish he'd stop telling me to be good to myself, and spend some. Ack! I've been poor, and I didn't like it at all.
------------------------------
I came across an article today on how left-handed people have faster communication between the two hemispheres of the brain, which makes them faster at such things as games, sports, and driving in heavy traffic, and allows them to use both sides of the brain in processing language and other high-speed tasks. They are bi-cerebral.
A man's mind will hook me faster than a handsome face. Roman's mind fascinates me. He's mentally very fast, and true. He's an impressive driver, too, and that's not something one would normally notice.
He's a lefty.
The left-handed brain:
http://www.dominicantoday.com/app/article.aspx?id=20273
That (and the misspelling of "Asperger" in the preceding post) led me to an interesting paper titled "Is Autism an Extreme Form of the 'Male Brain'?" The paper is fairly straightforward and simple. They note that typical male brains tend to be better at spacial tasks, and typical female brains tend to be better at social tasks (said notes bounded by the usual PC-required disclaimers, including that for the purposes of discussion, a woman can have a "male brain", and a man can have a "female brain", and there are overlaps). If you put spatial skills at one end of a spectrum, and social skills at the other, then you find:
Spatial skills
-- Autism
-- Asperger Syndrome
-- Normal Male
-- Cognitively Balanced
-- Normal Female
Social skills
The paper is well written, descriptions of how the mind handles tasks are very good. It leaves open a lot of questions for further research.
I found it interesting because I used to tell Jay that he had the most "male" brain I'd ever encountered. He was obviously way up there on the scale. He even had the thing where he saw the parts but not the whole. He saw a lot of things differently. If you asked him to draw a fence, he was likely to draw the spaces where the fence wasn't, rather than start with posts and rails. It ended up looking the same, but he approached it differently. I used to tease him about having an excess of "testosterone-on-the-brain".
And then he got the Asperger diagnosis. (And those folks who wrote the paper got PAID for their observations....)
His mind fascinated me, too.
Paper - "Is Autism an Extreme Form of the 'Male Brain'?"
http://scholar.google.com/scholar?num=30&hl=en&lr=
&newwindow=1&safe=off&q=cache:YnCbCfCXStIJ:
www.autismresearchcentre.com/papers/1997_BCetal_
Malebrain.pdf+author:%22Baron-Cohen%22+intitle:%
22Is+autism+an+extreme+form+of+the+male+brain%22+
.
I had lunch with Piper today. Before lunch we went over the financial picture. I'm not sure what he's built for me is exactly what I wanted - I wanted diversity, but I also require a certain income that I'm not sure is there. I guess my main problem is that I'm strongly averse to spending principal, I'm used to having interest and dividends to spend, and the way it's set up now I have to sell something to take money out, and that feels too much like spending principal. Actually, what I'd be spending is growth.
It's going to take some time until it stops scaring me. I'm trying very hard to be patient, but he can see I'm nervous. It must be the way my eyes and eyebrows get all big and worried when he runs numbers past me. At the same time, I have every confidence in him.
I just wish he'd stop telling me to be good to myself, and spend some. Ack! I've been poor, and I didn't like it at all.
------------------------------
I came across an article today on how left-handed people have faster communication between the two hemispheres of the brain, which makes them faster at such things as games, sports, and driving in heavy traffic, and allows them to use both sides of the brain in processing language and other high-speed tasks. They are bi-cerebral.
A man's mind will hook me faster than a handsome face. Roman's mind fascinates me. He's mentally very fast, and true. He's an impressive driver, too, and that's not something one would normally notice.
He's a lefty.
The left-handed brain:
http://www.dominicantoday.com/app/article.aspx?id=20273
That (and the misspelling of "Asperger" in the preceding post) led me to an interesting paper titled "Is Autism an Extreme Form of the 'Male Brain'?" The paper is fairly straightforward and simple. They note that typical male brains tend to be better at spacial tasks, and typical female brains tend to be better at social tasks (said notes bounded by the usual PC-required disclaimers, including that for the purposes of discussion, a woman can have a "male brain", and a man can have a "female brain", and there are overlaps). If you put spatial skills at one end of a spectrum, and social skills at the other, then you find:
Spatial skills
-- Autism
-- Asperger Syndrome
-- Normal Male
-- Cognitively Balanced
-- Normal Female
Social skills
The paper is well written, descriptions of how the mind handles tasks are very good. It leaves open a lot of questions for further research.
I found it interesting because I used to tell Jay that he had the most "male" brain I'd ever encountered. He was obviously way up there on the scale. He even had the thing where he saw the parts but not the whole. He saw a lot of things differently. If you asked him to draw a fence, he was likely to draw the spaces where the fence wasn't, rather than start with posts and rails. It ended up looking the same, but he approached it differently. I used to tease him about having an excess of "testosterone-on-the-brain".
And then he got the Asperger diagnosis. (And those folks who wrote the paper got PAID for their observations....)
His mind fascinated me, too.
Paper - "Is Autism an Extreme Form of the 'Male Brain'?"
http://scholar.google.com/scholar?num=30&hl=en&lr=
&newwindow=1&safe=off&q=cache:YnCbCfCXStIJ:
www.autismresearchcentre.com/papers/1997_BCetal_
Malebrain.pdf+author:%22Baron-Cohen%22+intitle:%
22Is+autism+an+extreme+form+of+the+male+brain%22+
.
1016 Santa-mentally Yours
[Later Edit - corrected spelling of "Asperger". I copied it over without noticing. Don't know how I missed that - Jay was an Aspie.]
Going around:
Schizophrenia - Do You Hear What I Hear?
Multiple Personality Disorder - We Three Kings Disoriented Are
Dementia - I Think I'll be Home for Christmas
Narcissistic - Hark the Herald Angels Sing About Me
Manic - Deck the Halls and Walls and House and Lawn and Streets and Stores and Office and Town and Cars and Buses and Trucks and Trees ...
Paranoid - Santa Claus is Coming to Town to Get Me
Borderline Personality Disorder - Thoughts of Roasting on an Open Fire
Personality Disorder - You Better Watch Out, I'm Gonna Cry, I'm Gonna Pout, Maybe I'll Tell You Why
Attention Deficit Disorder - Silent night, Holy ooooo look at the pretty, can I have a chocolate, why is France so far away?
Obsessive Compulsive Disorder - Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle,Bells, Jingle Bells...
Asperger Syndrome - Huh? Carol who?
Going around:
Schizophrenia - Do You Hear What I Hear?
Multiple Personality Disorder - We Three Kings Disoriented Are
Dementia - I Think I'll be Home for Christmas
Narcissistic - Hark the Herald Angels Sing About Me
Manic - Deck the Halls and Walls and House and Lawn and Streets and Stores and Office and Town and Cars and Buses and Trucks and Trees ...
Paranoid - Santa Claus is Coming to Town to Get Me
Borderline Personality Disorder - Thoughts of Roasting on an Open Fire
Personality Disorder - You Better Watch Out, I'm Gonna Cry, I'm Gonna Pout, Maybe I'll Tell You Why
Attention Deficit Disorder - Silent night, Holy ooooo look at the pretty, can I have a chocolate, why is France so far away?
Obsessive Compulsive Disorder - Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells, Jingle,Bells, Jingle Bells...
Asperger Syndrome - Huh? Carol who?
Tuesday, December 12, 2006
1015 International?
Tuesday, December 12, 2006
Sitemeter said I had a visit from someone in Germany. I clicked on the "Referring URL", and found a copy of my entire journal translated into German! Archives included.
Youch.
.
Sitemeter said I had a visit from someone in Germany. I clicked on the "Referring URL", and found a copy of my entire journal translated into German! Archives included.
Youch.
.
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