Saturday, December 30, 2006

1046 Personality Test

"Short Form" Jung Typology Test.

Your Type is
Introverted Intuitive Feeling Judging
Strength of the preferences %
56 75 12 44

Counselor Idealist

The Counselor Idealists are abstract in thought and speech, cooperative in reaching their goals, and directive and introverted in their interpersonal roles. Counselors focus on human potentials, think in terms of ethical values, and come easily to decisions. The small number of this type (little more than 2 percent) is regrettable, since Counselors have an unusually strong desire to contribute to the welfare of others and genuinely enjoy helping their companions. Although Counsleors tend to be private, sensitive people, and are not generally visible leaders, they nevertheless work quite intensely with those close to them, quietly exerting their influence behind the scenes with their families, friends, and colleagues. This type has great depth of personality; they are themselves complicated, and can understand and deal with complex issues and people.

Counselors can be hard to get to know. They have an unusually rich inner life, but they are reserved and tend not to share their reactions except with those they trust. With their loved ones, certainly, Counselors are not reluctant to express their feelings, their face lighting up with the positive emotions, but darkening like a thunderhead with the negative. Indeed, because of their strong ability to take into themselves the feelings of others, Counselors can be hurt rather easily by those around them, which, perhaps, is one reason why they tend to be private people, mutely withdrawing from human contact. At the same time, friends who have known a Counselor for years may find sides emerging which come as a surprise. Not that they are inconsistent; Counselors value their integrity a great deal, but they have intricately woven, mysterious personalities which sometimes puzzle even them.

Counselors have strong empathic abilities and can become aware of another's emotions or intentions -- good or evil -- even before that person is conscious of them. This "mind-reading" can take the form of feeling the hidden distress or illnesses of others to an extent which is difficult for other types to comprehend. Even Counselors can seldom tell how they came to penetrate others' feelings so keenly. Furthermore, the Counselor is most likely of all the types to demonstrate an ability to understand psychic phenomena and to have visions of human events, past, present, or future. What is known as ESP may well be exceptional intuitive ability-in both its forms, projection and introjection. Such supernormal intuition is found frequently in the Counselor, and can extend to people, things, and often events, taking the form of visions, episodes of foreknowledge, premonitions, auditory and visual images of things to come, as well as uncanny communications with certain individuals at a distance.

Mohandas Gandhi and Eleanor Roosevelt are examples of the Counselor Idealist (INFJ).

Interesting, given what I'd said in the entry about Frustrations #3 and 4. I swear I didn't take this test until just a few minutes ago.

1045 A Table

Saturday, December 30, 2006

I got the call, we've got a table for New Year's Eve. Yeah!

Longer term, I'd like to find a center table for the living room. Either something lowish that will match the Renaissance Revival stuff, or dining table height that's small but expandable. A few weeks ago "check out this wonderful table!" was going around blogs and emails - the DB Fletcher capstan table. Much too large and much much much too expensive. On Antiques Roadshow today, there was a smaller one - just the right size, and only one much into too expensive.

So I got to thinking, gee, seems like there ought to be modern versions of the smaller capstan table out there. You know, like from Sears. It would be ideal for breakfast rooms, family rooms, and "Florida rooms", and have the advantage that you don't have to store and drag out the extensions. You could even make the table cheaply with formica-like finish, and metal workings (not that I'd want formica, but that would be a good start toward reasonableness).

So I Googled "capstan table" -fletcher. I found one modern version, large, for "only" $23,394, and that was all. All others are a) antique, b) in England, and c) equally expensive. I did find some plans for building your own, but apparently nobody's building any .... or at least they're not selling them.

I found something very interesting in the above search results. When you get into the fourth or fifth page of hits, you get stuff like this (I broke the links so you won't get hurt):
Toodle-oo, The bargemen shoved an unasserted renunciable convocations savourless quadrillion themselves. An capstan table a subantarctic familiarly bromised ...

Lots and lots of hits that look like they were composed by a gobbledygook generator. Know what? They are! They were almost all sites selling cheap prescription drugs. They find out what words get searched for a lot, and then fill the site with those words. It's called keyword spamming. The worst ones consist of just a list of every word in the dictionary. I didn't expect to see them so high in the search order, because I can't imagine anyone ever actually clicking on them, but - I guess "capstan table" is not a very common term, so there weren't very many valid hits.

Friday, December 29, 2006

1044 Frustrations #3 and 4

Friday, December 29, 2006

I have been told that I tend to get too emotionally involved in other people's problems. There are people who have lots of friends, and they listen to their friends' problems, and then they walk away, remembering, but not feeling? I don't know. I don't know how other people do it. I always feel like it's my problem too, like somehow I have to fix things, make it all better. Of course over the years I've learned that people don't really appreciate efforts to fix, so I just listen and sympathize and offer advice if it's requested, in a "Well, I think.... What I might do is...." (the young lady in the previous entry is a special case) way.

But then I walk away all frustrated, because I still want to fix it, make the problem go away. I think about it and fuss until I know everything is ok, and I get frustrated when I can't fix it. I may expend almost as much energy on it as the owner of the problem. This may be why I have few close friends. I withdraw in self-protection. I am reluctant to get too involved with people, because maybe then I'd have to take care of them, and there are just too many of them? So I pull away.

Maybe it's because when I was growing up, and until psychotherapy in my 30s, I was made to feel that everything that went wrong was all my fault. Everything, always. Either something I did or something I didn't do. Dr. K. laughed that I had feelings of omnipotence, but it wasn't funny. Maybe I still have that lingering feeling that somehow it's my fault when something goes wrong for someone else (not logical, but feelings are not logical, by definition).

So, ok. Another worry follows.

About the same time I was posting about The Hellhole, the nursing facility Jay was in for two months, where they did their best to kill him, a good friend's elderly mother was falling. The downstairs neighbors heard the crash, and went upstairs to check, but my friend's father wouldn't open the door. They had to get the super, and when they went in they found her unconscious in a pool of blood.

My friend lives here. His elderly parents live about 200 or more miles away. He worries about them. His father is pretty much out of it, lately has been sleeping almost all the time. His mother has a collection of metabolic problems, and has recently been... um ...forgetful. Given that both parents have a lot of medicines, several months ago after both had been individually hospitalized, in rapid succession (they've been in and out several times in the past two years - he goes in, and within a few weeks of his coming home, she gets sick - his last week in the hospital was in early December, so I was expecting a problem with her along about now), their medical plan approved a daytime aide for several days a week, but not full time.

The mother, of course, is not at all happy about this. She doesn't think they need help, and doesn't like someone hanging around their small apartment all the time.

On one level, my friend knows he has a serious problem. On the other hand, he's in serious denial. While his mother is in the hospital (she doesn't recall falling, still thinks she's just fine, not a problem), his father requires 24-hour care. The whole family is of the opinion that a nursing home is where you go to die. There's an assisted living place near where his parents live, where they could have their own apartment with kitchen and all, and some of their old friends live there now, but his mother seems to think that "when it's necessary", they can just waltz right in. I told him that by the time his mother would consider it, she wouldn't be capable of rational thought anyway, and by then, they probably wouldn't accept them. So if you're looking at in-home care, you'd better start looking hard at it now. An obvious solution would be to move them closer to here, but his mother won't consider moving away from the area they've lived for more than 85 years - even though she doesn't get out much anymore, and all their old friends are gone.

Getting the insurance to approve 24-hour care may not be easy. His mother can be very convincing. We went through that with Jay's father. He'd forget who we were, or fall asleep in a chair and then think it was morning, even though it was dark out, or get lost trying to find the bathroom in the house he'd lived in for 50 years. But take him to the doctor, or bring a nurse in, and he would be sharp and clear and in-the-moment, and could carry on perfectly rational and topical conversations. He managed to make us look foolish, trying to rip off the insurance company or something.

His parents have a one-bedroom apartment. 24-hour care will be awkward.

So, 'tis a puzzlement. I know what I'd do, but ....

The last frustration concerns someone who has a physical problem, and the doctors seem to be patting her on the head and telling her no big deal because they can't figure out what's wrong. Hey, we KNOW our own bodies! We KNOW when something's not right. It IS a big deal! In my opinion, the doctors aren't looking beyond other physical problems they already know about. They're not looking elsewhere. They're not looking! It's like I know my roof is bad, so the water on the floor in the basement must obviously be because of the leaking roof. Missing entirely the leaking water pipe. Other things do exist, and do break.

Frustration #1 may be relaxing a bit. I called the club back, and talked with a manager. Yes, the wait list is 10 tables long, but they require that reservations be confirmed by Saturday night. Right now, 35 of the reservations remain unconfirmed. On Saturday evening they will start giving away the unconfirmed slots, so there's a very good chance that as #11 on the wait list, we could get in, especially since many on the wait list would have made other plans. So, we're on the list. Ta-rah!

1043 Frustration #2

Friday, December 29, 2006

"A certain very young friend" is employed by a church in NJ. The church uses a third-party check-writing bill-paying accounting service (I don't know what else to call them) to handle the pay checks. The checks are written on a BOA account "owned" by the church, and the young lady's paycheck is mailed to her.

She had originally opened her account with a credit union near Philadelphia, when she lived there. When she moved to central NJ several years ago, she began using the same account, at a local branch of that large credit union.

On December 11 she deposited two paychecks, one for the last week of November, and one for the first week of December, said checks having been written by the check-writing firm on the church's account with BOA.

On December 26, she received her usual monthly statement from her bank, and discovered to her horror that the two paychecks checks had been refused, and several checks and debit card transactions had gone into "overdrawn" (her bank didn't bounce them - they covered them, for a fee.) By this time, the fees and penalties had mounted to several hundred dollars.

Many meetings and phone calls later, involving the church treasurer, the check-writing service, BOA, and her credit union, she found out that the routing code for BOA had changed, and the checks cut for her had the old incorrect routing code on the bottom, and that's why they didn't go through.

Now she's getting the run-around. Her bank branch even told her that they couldn't talk with her, she'd have to go to the branch where she opened the account, several hours away. No one wants to take responsibility, they are all pointing fingers at each other, and all are pointing fingers at her. She's very small and young-looking, and it's not difficult to make her think she's at fault, and I guess they figure if they make it hard enough she'll just go away. I've been trying to buck her up and give her responses.

When BOA changed the routing codes, they would have notified the church, and the church should have notified the check-writing service. She should not have been issued a check with an incorrect routing code. It was not a good check. They knowingly issued a bum check. This is illegal - people go to jail for that.

She did nothing wrong.

The church is ultimately responsible to her and owes her for the penalties. If the church had notified the service of the routing change, and the service ignored the notice, then the church can go after the service, but she shouldn't have to deal with anyone past the church treasurer.

Guilt: "You should go online and check your account frequently, so you'd have found out sooner."
Response: "I keep a running balance, that's all I have to do. You issued a bum check."

Guilt: "You should keep a cushion in your account in case of problems. For example, I have a $1,000 cushion."
Response: "I'm happy that you have money you can let sit there while inflation deflates it. I don't have 'extra' money to cover your checks. You issued a bum check."

Guilt: "Other people got the same checks and they had no problem."
Response: "You are very lucky that they didn't. Maybe their banks don't use computers. You issued many bum checks, but got caught only once."

I told her in every discussion, you should end every sentence with "You issued a bum check", even if you don't say it out loud. If you have to say it out loud, and it's ignored, then amend it to "You knowingly issued a bad check, and that's illegal. People go to jail for that."

She is concerned that she has to have this discussion with !her boss! !her church! I said it's all in the way you approach it. Start with "WE have a problem", pointing out that you were paid with a bad check on the church's account, so the ultimate legal responsibility for the penalties you paid lies with the church, you have nothing to do with that, you wish it were different, but that's just how it is. So you expect the church to pay the penalties.

If the church did notify the check service, then the church can in turn recover the penalties from the service ("I'll join you in small claims court against them"). If the church received the notice and did NOT notify the check service, then the legal responsibility lies fully with the church, not to mention the moral obligation to make you whole again. You are sorry, but that's the way it works, and you can't afford to not exercise your options.

Be apologetic, but firm. Keep thinking "You wrote a bum check, and you expect ME to pay the penalties?"

I await the next development, the next phone call. I am annoyed enough at the way all parties concerned are trying to brush her off that I'm willing to hire a lawyer.

1042 Frustration #1

Friday, December 29, 2006

There are a bunch of things I've been frustrated by, or just fussing over, for the past few days. This is one of them.

FirstWoman and I have been talking about going to New World Home Cooking for New Year's Eve, but until last night it was all still up in the air, because it needed coordination with several other people. Last night we decided fooey on them, we're doing it, we'll tell them we're doing it, and they can show up or not. But she's on a budget and couldn't handle the full dinner package, which would be $100 per person, so we'd do the dance only, which would be $20. I figured it might be a bit late for anything, but I'd call NWHC today and find out.

In the meantime, a substantial Christmas check arrived in this morning's mail.

I thought about it for about three minutes. I have never, in my whole life, been "out" doing anything special on New Year's Eve. Except for when I was married to Jay, I'd always been pretty much alone when the year turned. Razzelfrats! I have an opportunity, I have a companion, I have some extra money, I wanna do it! I'll treat FirstWoman to the whole works.

So I called the restaurant/club and asked if they were still taking reservations for the dinner package. She said yes, but that they were full, and were putting people on a waiting list, and there would be ten tables ahead of us on the list. Gah. I know darn well that none of those ten is going to call and say "Have to cancel...", so it would be a matter of showing up and seeing if we could get in. It's over an hour's drive for FirstWoman. Not cool. The dance alone, however, does not require a reservation, it's pay at the door, so that's still an option, but I'd hate to arrive and find no space in the parking lot. Which is likely. It's full on an ordinary Friday night. And there's no street parking - it's on a highway. In the middle of nowhere.

I don't know what to do.

Thursday, December 28, 2006

1041 Ok, Right, Flashback & Smile

Thursday, December 28, 2006

South Park is on, and one of the teachers inserts an "ok" everywhere there's a verbal comma. I was getting more and more tense, and then I realized that it was because Ex#2 used to do that. Every verbal punctuation mark was a breathed "ok", no matter what Ex#2 was talking about or to whom. It used to drive me crazy.

I guess every so often someone would complain, because he'd switch to "right" for a while, then eventually go back to "ok".

I knew it was the beginning of the end when I stopped ignoring it and began answering each of the "ok" or "right" non-questions with a nice firm "ok!" or "right!" --- and he didn't even notice.


Here's an interesting test from the BBC:

They'll show you a series of 20 clips of people smiling, and you have to decide whether it's a real or a fake smile.

I got 16 of the 20 correct. I called one real smile fake, and three fake smiles real.

By the end of the series I had figured out at least one clue, but mostly I just decided by whether they made me smile, too. By the end of the test, my cheeks hurt from smiling.

By the way, I argue with their terminology. All the smiles were "real". What they're actually differentiating between are spontaneous smiles, and smiles produced on command.


1040 Travel Sans Velocity

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.

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.

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 annual happyshit 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.

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."


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.


  • 03/19/01 Monday - Arrival at the Hellhole, apx. 3 PM. List of medications and prescriptions had been sent ahead, including
    1. Hydrocodone/APAP 10/500 1 to 1 1/2 every four hours or 2 every 6 hours (prescribed by the neurologist),
    2. Fragmin 5000u 1 every day,
    3. Dilantin 300mg twice a day,
    4. Topamax 25mg at bedtime,
    5. Dexamethasone 4 mg (Decadron) every 8 hours.
    They had no meds when we arrived, so we used what I had brought with us. Jay: nausea, headache, left arm clenched to chest (mild focal seizure), cannot bridge or roll over.

  • 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.
I was angry because I felt that any lack of consistent progress in PT on Jay’s part (there is no lack of progress, just a lack of consistency) leading to discontinuance of PT was mainly due to
  1. inadequate medication for his headaches, even after requests from his neurosurgeon, who knew best what he was experiencing
  2. side effects of the immunotherapy, (edema and associated lethargy) also inadequately and belatedly treated
  3. inadequately and belatedly treated visual problems which made it difficult for him to see and therefore control his left limbs.
I was angry because if, as a result of this PT decision, we lose insurance coverage, then we will be forced to pay, out of our pockets, $9,000 a month for sloppy and inadequate care that was actually damaging him.

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.


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.

  • 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.

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.


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.

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!


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, at

Default Can I Delete Temporary (.TMP) Files?

Can I safely delete temporary (.TMP) files?


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!]
DaBoss at

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.
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.