Chapter 6: Terminal Cancer, Election.

This is my fabulous brownie recipe. It comes from the Silver Palate Good Times cookbook. It has been utterly reliable for me, and has engendered several proposals of marriage.

Coffee Blond Brownies

1 pound dark brown sugar
¾ cup (1 ½ sticks) unsalted butter
2 tablespoons strong instant coffee powder
1 tablespoon hot water
2 eggs
2 tablespoons (yes, tablespoons) vanilla extract
2 cups unbleached all-purpose flour
2 teaspoons baking powder
½ teaspoon salt
1 cup chopped pecans
1 cup semisweet chocolate bits

1) Heat the brown sugar and butter in a medium-size saucepan over medium-low heat until the butter melts. Dissolve the coffee in the hot water and stir into the butter mixture. Let cool to room temperature.
2) Preheat oven to 350 F. Butter an 11 x 8 inch baking pan.
3) When the butter mixture is cool, beat in the eggs and vanilla with a hand-held mixture.
4) Sift the flour, baking powder and salt together and stir into the butter mixture with a wooden spoon. Stir in the pecans and chocolate.
5) Spread the mixture evenly in the prepared pan with a rubber spatula. Bake until lightly browned, 25 to 30 minutes. Do not overbake.
6) Cool completely and cut into 2-inch squares.

20 brownies

--
Aloha,
Catharine

Eat that which is good, and let your soul delight itself in fatness.
--Isaiah 55:2

A while ago I made some comment about the 'net being a good noise source, and that the amount of disinformation drowns the information. I just saw another comment on this on the BC group (below). I think someone could probably do a PhD study on this, the more I think about it the more I see it runs deeper than it seems.

I think you're right. Fortunately, I and the normal people I know use the Net for anecdotal personal support, like the stuff we get from the normal people on the BC support group. Now, my sister went a little overboard with her infertility stuff back when she was infertile, but that fortunately seems to have died down and she's not downing gallons of Robitussin anymore. (Two children under three act as a significant mental birth-control method.)

You are quite right here to point out that what I am talking about is the net as a reasearch tool (its original purpose after all). It is still a wonderful communications medium for personal and group discussions, and spam doesn't really impact that. (Who's normal anyway?).

Unlike existing publication media, 'information' on the net can be placed by individuals with no observation, checking or verification by peers of any sort. Looking at this as an information theory problem, we have signal (genuine facts, which are researched and independently verified to match the real world) and noise (the rest - opinion, advertising, deliberate libels and so on). How now do we design a 'filter' to descriminate between the facts we want to find and the noise that others want to sell us.

I highly recommend quackwatch.com. It has lots of useful information about information discrimination.

Yes sure, I love it, but the proponents of quackery would see that as biased disinformation too. In this case there is a clear majority in favour of the mainstream, but the distinction is getting more and more blurred. One day there won't be a mainstream to comfortably stick to, just a range of sources of varying credibility.
A noise filter has to somehow discriminate between true data and deliberate lies or distortion, eg in this case that put about by either drug companies or herbal remedy salespeople. Remember the research paper that found that chocolate is good for your teeth? (Funded by the sugar industry). The usual mechanism is peer review, the opposite of a free-for-all publishing system, but that is expensive. Quackwatch is a sort of peer review, but it is still a single voice and does not have the real authority of a majority opinion.
On the other hand Linux does this well, it is both peer reviewed and self moderated, a real Darwinist system. (One writes a chunk of code and publishes it, with source code. If other users like it they use it. If they want to change it they do and publish the changes. If the changed version is more popular it supplants the original.) I suppose that could be an example of how things should work, but I am not sure how you can apply it to other areas. More work for PhD students!
In my own life, before I discovered Quackwatch, I automatically mentally filtered out anything with key words such as "secret of the ages," "organic," "all-natural," and "they don't want you to know." Also anything in all-capital letters is suspect.

I am still trying to write rules for my browser to trap such spam. Last week a list-mail from my bank went into my trash mailbox because they sent it to generic recipients and forgot to fill in the 'from' field. My main spamtrap is "To:<not my name> & From:<not on my list>". I protested that it had routed with "Hot Teen Sluts" and they promised it wouild not happen again, but it is damned difficult to trap all the crap and still pass all the important stuff. (We have naked Barbie-dolls all over the house. I don't generally find nude teenagers very exciting. I prefer grown-ups) Well, that's a relief.
In the medical arena, anything which appeals to my emotions or starts out with unsubstantiated allegations that are not commonsense, I ignore. If it can't make its point on verifyable facts then it probably doesn't have any.

In the end we have to assume the information is not to be trusted and each do our own review of everything we read, testing each offered hypothesis against observed facts. But this is exactly what we do without the 'net. The 'net was intended to allow many people's observations to be collected and used to dramatically speed the process of testing hypotheses, but that was its use by the scientific community who basically trusted each other at least to describe their observations honestly. In its new public incarnation as an advertising medium this trust is lost. As a source of hypotheses to be tested it is just a 'noise source' and is only a substitute for imagination.
In the end there is a danger, if not a certainty, that it will be about as easy to get information from the net as from roadside advertising posters.
To this end I pondered the setting up of a disinformation website named, say, Tiger Spots. This would contain hundreds or thousands of pages with a deliberate lie at the top of each one, and then a disclaimer underneath like "Not everything you read is true" (courtesy of the Guinness poster series a couple of years ago - which ran silly quotes like "80% of pollution is caused by trees - R Reagan" over a line like this). The effect would be that many search engines would pick up these lines and display them, shorn of the disclaimer, among the 'real' page headers. It would be a bit like an email bomb attack, but attacking search engines instead.
The upshot is enjoy the net while we've got it. It is doomed to die, killed by what we now perceive as spam.

Really? I think spam will actually decrease, as advertising cookies get more sophisticated and people (like me) accept ads as part of getting free Internet hosting and tune it out.

I'm sure that in time advertising executives (and their clients) will come to realise that painting volume adverts on the screens of unwilling recipients does little to enhance sales, as you say they get tuned out. We have Shockwave's Shockmachine which simulates a games machine on the PC in Java, and Natasha likes playing it. When you are online it streams adverts in a box above the game screen. Quit honestly I couldn't tell you what was in the box, even whether it was an advert or the offline banner. My eyes *never* go up there.
This is really 'push' advertising, mass mailing in another guise. The web page carrying the banner may be demand-displayed, but the banner itself is broadcast spam. I'm not sure I even know the vocabulary for this, or if there is one at all. 'Broadcast', 'publish' etc. all mean sender-controlled
transmission, like Usenet. 'Mail' means consensual one-to-one (or one-to-few) transmission. There isn't really a word for reader-controlled transmission like the web.
What I am concerned about is the more directed level of 'pull' advertising which appears as news, public information, more like 'advertorial' in the press. The stuff that you get when you search for information on a subject. Search engines taking payment to push your item to the front of the result
list. This is the real growth area, for which I cannot see bounds. As the sophistication increases the pros should learn the 'blocking' keywords and styles, and avoid them, and realise that this gets straight to the potential customer without annoying millions of passers-by and thereby generating
negative corporate-awareness.
These boy wonders are so bright that they still flood us with images we don't see. How long would it take them to realise that web searching was falling into disuse because they were degrading the information base? Their feedback is so slow, it can take years to find out whether an advertising
strategy works or not, and decades to realise its efficacy has fallen. It all works on fashion and hearsay, and numbers of customers 'reached'.
(There can be few people who listened to pop music in the UK in the sixties who don't know how to spell Keynsham (pronounced Cane-sham). Radio Luxembourg, the first commercial pop station, ran an advert for a football pools gambling 'method' from a company based in this town, and because of the unphonetic spelling they spelled it out in the ad. It was so overplayed
that Keynsham became a byword for advertising overkill).

Tim, may I ask you questions about Lyuda's decline and death, or is it still too painful to discuss with a casual acquaintance?
Of course you may. That's why I still get involved in alt.s.c.b. It stoppped being painful as soon as she stopped breathing. I'm not sure why it was like that for me and not for other people. The Minister at the funeral (a very bright ex-physicist) said this was an unusual reaction. For me, the relationship was completed and life moved on. I suppose it had become stagnant, although had she lived I'm sure we would have found new ways to progress it again after a while. I wasn't very happy with how things were, but I had no mind for looking for anything else. Also, I never felt
dependent on her, having lived alone most of my life. Maybe a combination of these things, and my habit of running my emotions ahead of reality, in what-if scenarios, made it like that.
Okay. What I'm trying to get an idea of is what things look like when the doc says, "You're terminal." I am very uneasy with my doctor's ability to tell me if/when I'm really dying. I have a feeling he's just going to keep trying and trying and trying. Do you have any old lab reports from her?
I am impressed with your honesty about your wife.
I recognise the attitude of the doctors. Ours never said "You're terminal", he just figured that we knew that metastatic meant terminal, eventually. We discussed prognosis and he said typically one to two years, but he had one patient at ten years or something, I've forgotten now, but it was in one of my articles. In fact she lived one year to the week.

Hmm. I can't remember. Did she have just bone mets or some soft tissue mets?

Initially it was just bone mets, but inevitably it spread elsewhere eventually, liver in her case.

Thanks for letting me know. I am feeling blue (well, actually green) with nausea for the last three days, from the weekly Taxotere that is not supposed to cause me nausea. If I become nauseated from Taxotere there must be something wrong with me.

I wouldn't say that was guaranteed at all. Firstly, reaction to drugs is a pretty personal thing and could vary a lot. Maybe you are reacting to the Taxotere.
Secondly there is the possibility of an immune type reaction to the drug. If I drink more than three pints of beer I get more nauseated than drunk. According to received wisdom that doesn't happen, but it is not uncommon. It doesn't happen with wine. It was explained to me that I 'react' to something in the beer. Maybe you 'react' in this way to Taxotere.
Thirdly it may be that you are reacting to something else that you are taking.
Fourthly it may be that the anti-nausea medications that come with the dose are insufficient. Lyudmila had no nausea on Taxol, after they gave her a Zafron pill along with the infusion. They wouldn't have given her that if they didn't expect nausea, its expensive.
Only after all these might one suggest that it is an independent symptom of something else wrong. Even then it's probably not cancer.

No. I believe it is G-d punishing me for my sins. :)

Well the sins must have been fun then. :-}

Yes, indeedy. Non, je ne regrette rien and all that.

Lab reports are something it is not so easy to get hold of here. You have to get the consultants permission, and he has to be convinced you have a good reason to need it.

How silly, I must say. Oh, well, at least then you're not in the position I am of having the scary bone scan and no one to tell me if it means I'll be dead in two years or not.

Freedom of information is all very well, but it seems to work against you here. Our drs think that the ordinary patient in the street can't understand a technical report, and they are probably quite right. So what one gets is an explanation of the meaning of the results in a face to face interview with a consultant. Consequently they get a bit secretive about the actual reports, nominally to avoid misunderstanding. That said, nearly all the times I've wanted to see them there has been no problem.

One particularly bad registrar tried to hide one particularly bad bone scan report like a schoolgirl afraid of her classmate copying. I read it upside down on her desk between her arms. There was a bit of a row and we didn't see her again.
The reports were highly technical, and I had to learn the vocabulary to understand them. I can understand the drs being afraid that patients will get wrong ideas from reading what they partly understand, but even mildly intelligent patients soon learn what is important about their particular
disease, (and we aren't talking 'mildly' here).
The scan reports generally said things like "increased uptake to ... " and a long list of bits of anatomy, followed by "This is indicative of metastatic disease." The diagnostic X-rays looked pretty scary. Now I know it takes a lot of knowledge of anatomy to read an X-ray plate but even I know that spines shouldn't bend like that, and surely that jumble of bones at the bottom should be a bit more orderly.
Once the M word had been said, then it was explained that the regime was now 'palliative care'.

See, my doc says that chemotherapy at this point is palliative or "salvage," which I dislike even more, but then he says to keep plugging away at the taxotere until we see if it's doing any good. Huh?

Well that makes sense even in a palliative regime. If it can hold the disease at bay then it's worth doing. People like Carolyn seem to survive quite a long time quite comfortably under this sort of regime. It does happen that the disease goes into remission, sometimes.

Well, if I could survive comfortably, I would do it. I must say, though, the taste of bone met pain I had was far preferable to nausea. At least if I took my pain meds and lay still it didn't hurt. I'm gonna have to have a long serious talk with my family and my doctor.

A taste isn't the real thing. You want to know how bad bone pain can get? Well it gets bad enough your muscles cramp up and you sweat all the time and you can't sleep.

Well, that's pretty much the taste that I got, except people kept telling me it was bad bursitis.

I am relieved that I appear to be adequately prepared.

Yeah they kept telling Lyudmila it was arthritis in her back until she went to an orthopod who said it wasn't. I get the impression they try treating for anything that looks remotely likely on the grounds that if its not mets it might fix it, and if it is, well they can't fix it anyway and trying won't do any harm. Only thing is they don't tell the patient what they are thinking.

So then you have to have pain meds if only to sleep, more and more. 30mg of morphine is ok, it kills off the pain and makes you constipated and that's about it, but as the bone erodes the pain keeps on getting worse and you need more and more morphine 100mg, 300mg, more.
Around there you start to get disorientated and to sleep all the time, and twitch a lot even when you are asleep, while trying to strike a balance between constipation and diahorrea. At high doses you can switch to other drugs like Fentanyl, which is better, but you still end up back in the same place after a while. Then there are structural problems, even if you can control the pain you can't move around much because you break things. The drugs don't stop the pain completely, you've still got some pain all the time you are awake, and a lot whenever you move. You end up deciding how you want to balance sleep and pain, you can have pain-free and no life by sleeping all the time, or you can have a painful wakeful life, or something in between.
If you can keep the tumours down and minimise the structural damage, you minimise the source of pain in the first place and don't get into these problems. Pain meds are not a complete answer, they are only a part of the solution, to take off the last bit. Radiation, chemo and anti-inflammatories all play a part.
That said, chemo is the bottom of this particular totem pole. It is generally least effective against bone mets. It didn't have much effect for Lyudmila. Oncs tend to want to keep it in reserve for holding soft tissue mets down once it gets beyond bone. They went for it with her partly because she was demanding it, and partly because the bone mets were advancing fast and they thought it might slow things down. They stopped it midway because of gut problems that were probably a combination of lumbar radiation and anti-inflamatory side effects.
Maybe they can improve on the anti-nausea meds.
What I'd like to know is how long it's going to take to determine if the Taxotere is doing any good. The way I feel now, I don't want to go back on Monday for my third treatment. If I knew for sure something like, "oh, after six treatments we'll be able to tell" I might be happier about it.
Sorry to be so miserable.

Can't the onc tell you what his criteria and aims are? I imagine he will go for a full course unless overtaken by events. Maybe he'll do scans halfway through to check it out.

I intend to press it. He is inexperienced and very nice. He actually has a Ph.D. in comparative literature and was inspired to become an oncologist by the death of his first wife. Oh G-d spare me. No wonder he loves how witty and literary I am.

The doctors never really claimed to be able to tell me if and when she was dying until it was really obvious, about 2 weeks before the end when the bloodwork showed she had liver disease. The District Nurse was much better at this, I guess she has much more relevant experience.
Even she couldn't say when. She knew what 'stage' she was looking at, but she said some would cling on for months in the 'final' stages, you just couldn't tell. The doctors were very much 'close to' the problems, attacking the symptoms as they occurred with little concern for overall progress. This is the way with palliative care, you just react to the symptoms of the disease as it progresses to maximise the comfort of the patient.

Another matter, last week a close friend (John, early 50's) got a muscle pain in his thigh that was bad enough to stop him working in the business he owns. On Friday we heard that it was a tumour and they were operating. This morning I got a call from his wife: its cancer and he's in ICU! She was understandably shocked. What a bastard. When it slow and you have time to adjust is one thing, but having it dumped on you like that is truly awful. At least he literally bought the farm about 15 years ago, that was how I met him, I bought his old house.
Oh, heavens, that is sudden and horrible. Is he in ICU because of the cancer or because of the surgery?
I don't know yet, his wife wasn't in any state to start discussing technicalities with someone not immediately involved. However the fact that he is a chronic asthmatic probably doesn't help. I'll probably find out today.

We got some more information on my friend John, and he seems to be recovering now although it was touch-and-go for a while there. It appears he had a bowel cancer in the rectum. The operation was complicated by a chest infection on top of his asthma. He was having heart function and breathing supported on Friday, but he is under his own steam again now. They took out a chunk of gut and gave him a stoma bag. I haven't heard anything about pathology reports yet.

Oh NO. How dreadful.

Poor John. Stomas and bags just gross me out, and I heartily pray I never need one.

Talk about a pain in the arse!

You, sir, are a bad bad man. Shame.

Me and my BSOH.

Quoi? Qu'est-ce que c'est un BSOH?

Well, singles ads usually ask for a GSOH - good sense of humour, so...Comprenez?

AH... the penny drops. Why would anyone specify a GSOH in a singles ad?
Wouldn't it be a given? Would someone want a BSOH?

Some (most) people are very naive. They usually also specify that the want a 'genuine' person. I would be quite interesting in discovering what the alternative was. I suppose they mean a serious relationship. I had fun writing mine like a piece of advertising copy. At least it got some replies.
You should see the Russian girls' ads. They all say the same thing. I have sometimes seen them word for word identical, I guess they just copied the sample text handed out by the agency because their English wasn't good enough. Usually something like <height , weight, hair colour, eye colour,
d-o-b>.."I am affectionate and loving. I like theatre, cinema, family life and travelling. I want to meet an intelligent caring sensitive generous man who does not drink." Totally content-free: Avoid! Avoid!

I have seen some. They remind me of the Filipino girls' ads, though the Filipino girls' ads tend to emphasize their old-fashionedness. I worked with an organization in Hawaii that helped mail-order brides (mainly Filipina and Thai) so I am somewhat familiar with the type.

He is now out of hospital and recovering after a -very- near brush with death. He still has the tumour, but he also had an abscess on his thigh, double pneumonia and deep vein thrombosis. They are planning chemo to reduce the size of the tumour before operating on that, once he has recovered from the current lot. They say the tumour has not attached anything important apart from affecting the sciatic nerve, which was what first raised the alarm. They are confident that once it is reduced they will be able to clear it and may even be able to reverse the stoma. Heavens, what a relief.
Now he is stuck at home with very limited mobility and bored out of his brain. He has just asked me to get him some computer games - e.g. a joystick and a flight simulator.

Yup, that's what I got David, who is stuck in a hotel room in New Jersey for most of the next couple of months. Now me, I would want a book, but I guess there's something about blowing away alien invaders that appeals to the couch-bound male.

Cindy the child-minder has been remarkable. Despite her own disability, she has been running John's (reconditioned industrial heaters) business for him in his absence as well as looking after Natasha. She knows quite a bit about the business since writing his website (which is how he came to introduce her to me). She has sorted out his accounts, answered the phone, processed orders and sales, paid bills etc. and ensured that his one employee (who is a good mechanic but has no idea about office work) has enough work to do to keep him busy until after Christmas. No wonder she needs a holiday.

She needs a new title besides child-minder. How about fairy godmother?

It has been mentioned. She got back from her holiday today and insisted on meeting Natasha from school, despite not having slept for 48 hours. Said she wanted to force her body back into local time. And to fill time until the pub opened and she could replenish her Guinness deficiency. Apparently you can't easily get Guiness in the Dominican Republic. Did I mention she has a 'hollow leg' as far as beer is concerned.
What a charming and unique woman!

OT: Simon Schama's "History of Britain" series started on the History Channel last night. Very good, and he managed to make the pre-1066 Saxons vs. Romano-Brits vs. Vikings intelligible and interesting. It's something that I, as a history major, have generally skipped over to get to the more glamourous Plantagenets, Black Death, and Georges. Is he a media darling in the UK? If so, does he have some kind of congenital twitch I shouldn't make fun of, or does he just emote in a comical way?

Sorry, I don't know him. I think this is something to do with that other world called Television to which most earthlings seem to be able to transport at will. I admit I have seen, heard or read a few good items on this era recently, it seems to be now a fashionable area for research, having been neglected for so long. When did we learn to call Bodicea Boudicca? Maybe something like the monk researching the ancient scrolls suddenly coming out shouting "We got it all wrong! It was a transcription error! The word was celebrate!"

So are you near the naughty River Ouze, whose misbehavior we see on CNN?
Just how soggy IS it there?

No I am standing here at about 800ft altitude on a hillside on the other side of the Pennines laughing my socks off. Oh, good for you. It doesn't flood here, it would have to fill up Manchester first, and that's on a plain. You can melt the whole ice-cap for all I care. That might take care of the first 50ft.

Well its pretty wet in the south and east, but I haven't had to go there. Why do people think its such a good idea to build houses on the river flood plains, then complain because the people upstream build flood defences which confine the river and pass the problem downstream rather than letting the valley buffer the excess?

I don't know. We do the same thing here. I have no sympathy when expensive beach houses in Malibu crumble into the ocean because I have grown up on a beach and I know the nature of a beach is to be there and then again not to be there. Why do people live on the barrier islands in the Carolinas? Why do people live in Bangladesh? I don't know.

Ah the last one is a bit different I think, they get born there, I don't think they have much of an immigrant problem. This is just raw population limits - the fertile river delta will support a big population as long as it doesn't mind being washed away from time to time. So then they have to breed like rabbits again to produce enough population to satisfy the river god next time.
Now there's a thought. What we need is a good birth control policy for Bangladesh, then build some nice desireable residences right on the waterfront, double glazing, air conditioning and lots of air freshener, and persuade the great and the good, well the great anyway, that this would be a good place to be tax-exiled to. The fashionable place to live. That's real population control. We could pump away our least desireable assets on a regular basis.

My godmother's daughter Martha, who is 28 and utterly gorgeous, is on her second two-year tour of duty in Bangladesh with the Peace Corps. She loves it and never wants to leave. I guess it takes all kinds. And *she* grew up in East Anglia and Grosse Point, Michigan, which *I* think are both fabulous spots.
Oh, how I would love to straighten out the third world.

I laughed my ass off when I read about a tornado hitting a mobile home park in Bognor Regis. Tee hee. Mobile homes (or trailers, or whatever you want to call them) are so clearly tornado magnets in the US that I don't understand why some bring grad student hasn't done a study on the phenomenon. Then to find out that this very rare event in England zaps a MOBILE HOME PARK... hahahahahahaha. Too funny. At least the phenomenon is consistent.
I was not happy about buying this house that we're living in now. It is on the flood plain for the Green River. The real estate agent told us (and research confirmed) that it has never flooded here. David makes fun of me. However, my uneasy feeling has continued. Newspaper article last week: Mt. Rainier is America's most dangerous volcano, and we are DIRECTLY in the path of an ash, mud or lava flow if it blows up, as it is due to do in the next 75-100 years. I *knew* something felt funny.

Well I suppose living under a lava flow would make it feel like home.

This is just to rub it in. We have a protest about fuel prices, well you're a yank, you wouldn't understand that, but it meant no fuel for a week, then we have a rail accident and everyone jumps up and down about safety, so the rail authority goes "Alright - you want safety first, OK lets do it" and shuts most of the network down for safety checks. Then floods, and the protesters threatening to have another go next week, although that's mostl;y media hype.
Apparently the protesters intend to mount a slow-convoy blockade of certain roads and waterways. There was a joke that the trucks would block the roads in the north and the boats would block the roads in the south.

Yes, we saw it on the news.

I am enjoying the first real autumn I have ever seen, with the leaves turning colors and all that. However, I, as a child of the tropics, have a little trouble managing a coat. I accept that when it is 35° F outside, I will need a coat. However, I get into my car in the garage, which is kept warm by the water heater. It's only when I get to where I am going and face a lengthy chilly stroll across the parking lot that I wish I remembered my coat. Sigh. I guess I'd better just keep one in the car.

I am quite annoyed by the presidential election here. I am praying that Gore somehow manages to pull Florida out of the hat, but I have a bad feeling that he won't, and we will have the first Republican President and Republican Congress since Eisenhower. And we all know that the '50s were a time of great social progress, yeah right, grumble piss moan.
I can't understand why the news hacks think we are so interested in it.

BECAUSE WE'RE THE BIGGEST AND BEST COUNTRY IN THE WORLD YA YA NEENER NEENER SIS BOOM BAH! (pounding on chest and hooting)

Yeah but we've got HISTORY. We're INTERESTING.

It almost knocked off the wonderful story of the failed burglary of the Millenium Dome where the burglars used an earth mover to dig under a vault containing a display of diamonds. Sadly the police were there waiting for them, and the diamonds had been removed to safety. I think they had been watching too many movies.I saw that! I thought it was hilarious! It ought to be made into a movie.
Said hacks this morning were expressing sadness that 'Dublyu' appeared to have got in.

That should be "Dubya," BTW.

Touché! I guess the newsreader mispronounced it. After all they still can't even say Chechnya without the mandatory southern-english ending "Chechnyar" or even "Chechneeyar". No wonder they didn't report the war in Tbilisi very much.

They seem to think he is a bit of a bad joke.
Yeah, well, a Republican president + a Republican-dominated Congress = Eisenhower, and many of us who are concerned with rights secured since Eisenhower are nervous.

I can't believe there are serious political issues that divide the American people right down the middle like that, it sounds more like the issues are mainly trivial, and while everyone has an opinion which they will defend to the death, no-one has a convincing argument in favour of either.
That is exactly true. We love heavy-duty emotional issues like the death penalty and abortion, and we don't care about the ones that really make a difference to us, like economic and trade policies. They're too boring.
Funny, my favorite candidate for Senate from my district, Maria Cantwell, is a dot-com millionaire who refused federal election money and all PAC donations and is spending her own money on the campaign -- and people don't trust her and think there's something up her sleeve.

Are you really online at this hour or was your post to a.s.c.b just now that coincided with mine just slow coming through?

No, I had fallen asleep in front of the TV, got up to take my meds and go to bed. That was me.
Whatever, have a good Christmas and New year. I haven't been writing much but I've been reading your posts. Oh, what fun for you.

It's the busiest time of year for me: manufacturing industry works flat out to fill the shops for Christmas and the New Year sales, and so their machines break down and then they are in a panic, so there is much demand for a freelance industrial troubleshooting engineer. Yay for freelance industrial troubleshooting engineers who can use the money! Also my childminder has just had two weeks vacation in the Caribbean (OK for some! But she sure deserves it - see below). So things like writing letters and Christmas cards and presents has largely gone by the board.

Well, how uncivilized of you. Don't you know that you're supposed to work around the clock in order to maintain Chistmas civilities?

Another feature of Christmas is that my omissions of nine months ago come back to haunt me. Who got missed off the funeral mailing list? - all those who send cards addressed to Mr & Mrs. So I have a few more letters to write. That sounds miserable.

I've been having ups and downs. I am quite unhappy with David, and had planned on leaving him in March, when I will be finished with chemo and receiving my SSDI payments. I was so high and happy after falling down the stairs and not hurting myself that I just knew this chemo would be the magic bullet. I started thinking about going back to school during my three years of SSDI -- either to get a doctorate in public health, or to just throw my years of school in the air and start all over in geology, which I really want to do. Cancer is a watershed event in my life, not the end of my life. Yeah!

Did I tell you I once had a mad urge to study geology. I read a fat textbook cover to cover, bought maps and soaked up everything I could on the subject. It lasted about three months, but I have never looked at rocks in the same way since. When I look at the Millstone Grit quarry face in my back garden I see the whole carboniferous series in my mind's eye.

Yeah, I had that urge when I was around eleven, and I am kind of hanging back on it now in case it is a similarly passing fancy.

Then, sadly, I mentioned to my doctor that I had these weird fatigue feelings in my right shoulder and hip, and he's got me scheduled for another bone scan. Since he did that, I have -- with a thud -- become aware of all the things that hurt on me, that weren't hurting on me when I saw the first bone scan and said, "Well I can't have metastases there, nothing hurts!" Well, now it does. Not much, but it does. So I am a tad blue. I am praying that this is hypochondria.

Got to get going. I was a slug last week, and I have to Federal Express my presents to my niece and nephews so they will get there on time. Rush rush rush. But it was fun being a slug.
Metastases don't hurt until they break something or break into something. The bone scan shows them first. What you are feeling sounds like they are using up your bloodstream resources, like an infection does. A bit like the bone aches you get with flu.That sounds likely.
You sound definitely oscillatory, emotionally. No sh*t, Sherlock. (Don't mean to be rude!)
The first paragraph is great, enthusiastic and probably over-optimistic. The second paragraph swings too far the other way. Sanity probably lies in the middle. Having boyfriend troubles can't help. Sometimes I wonder whether other people are worth bothering with. You know, all my problems come from other people. If they weren't there life would be easy. (I remember computer operators saying the machine runs great until the users get on it. That also reminds me there was some sort of trade joke in the film Tron about the heresy of believing in users.)

That is depressingly true. Especially now that I can order groceries over the internet, I could literally never leave the house. My problem with David is my innate weakness and selfishness.
I like living nicely. I am very glad that I was able to quit working with this chemo, because I couldn't have worked and done it at the same time. So what would I have done? While waiting for SSDI, I have *no* income. I could live in my mother's cramped back bedroom in a condo in Makiki, and put up with crazy her and her incredilbly dull-witted new husband, OR I could have moved in with either my sister or my brother and prayed somehow to be able to keep up my insurance payments. Instead, I found David. This is a very good situation for me. I am covered by his insurance. He's hardly ever home. All I have to do is keep the house nice for him and cook when he's home -- hardly a strain. He gives me money when he thinks I need it, which is far more often than I really do. He wants to get married and has bought a ring with a vulgarly huge rock on it.
I am an ungrateful wretch. Even while I am congratulating myself for having fallen into this pot of jam, I am making fun of him behind his back for his pretensions and his bragging and his poor hygiene. Not very nice, if you ask me.

It is a shame what the medical insurance system drives people to do with their lives. I have heard much criticism of the British National Health Service, not least from Americans. When it came to actually using it 'in anger' and comparing our experiences with those of US writers on the ng I find that there is not that much to chose. I don't feel that we get a second class service, the same problems exist in the US and other services as well - queues, regional variations, poor communications etc. On the other hand, at least it is guaranteed to everyone. We don't have all the issues of residency and finding a doctor who takes the right insurance and worrying about not being eligible, and least of all being dependent on a partner's insurance. Much less paperwork.

It really, really is. And yet I must hang on to it. Even if I decide to quit treatment and drop dead tomorrow, I'm not getting into a hospice without insurance. I have no quibbles with National Health. I have been working for YEARS to get nationalized health insurance here. We came so close in Hillary's heyday, but I'm afraid it will never happen.

And I don't understand what he's getting out of it, except I know that one of his ex-wives died of breast cancer after she left him and he still feels bad about that. He finds fault with everything I do, yet he still oohs and aahs about how much he luuuuuvs me. What's the deal? Did he take out a big insurance policy on me?

This is a familiar situation. What he is getting out of it is someone to put down so he feels good. Lyudmila used to do it to me, hated herself for it but couldn't stop. It was very stressful, and took a lot of willpower not to escalate the battle. I tried to keep reminding myself what she was doing and why. Yes. Knowing it, though, doesn't make it any easier, as you have pointed out. I just keep reminding myself that I get what I pay for.
Perhaps he is also 'paying off' his perceived debt to his late ex-wife. I can understand that too, my first live-in girlfriend went on to get MS long after we split up. Ooooh GOD the guilt! (I'm much happier to have cancer than MS.) From time to time I felt a little guilty about not going back and supporting her, but that's shit. I don't owe her anything and she never said I did, and her being disabled is not grounds for trying to restart a relationship that didn't work when she was healthy.

I think the most sensible and honorable thing for me to do is, once SSDI starts up in February (I'll have $1073 a month, woo-hoo!), take my stuff, move back home to my mother's back bedroom, and figure out what to do next. By then we'll know how the chemo worked and I should have some idea of my prognosis. I'll be able to COBRA David's insurance, so I won't be a charity patient.

I don't really know how the American system works. What are SSDI and COBRA? Lyudmila got a state disability benefit of about £400 a month. Under normal rules you have to be disabled for something like six months before you qualify, but if you qualify under 'special rules' then you get payments straight away at the end of the month. 'Special rules' means terminal illness, but they call it that because some 'clients' may not have been told that they are terminal.

SSDI is Social Security Disability Income. Had I been SENSIBLE and not taken the job on Midway, I would have been working for a company (my old job at Waikiki Health Center) that provided long-term disability insurance, and I would have a payoff from that as WELL as SSDI to live on. But no, I had to do the *adventurous* thing.
Like Lyudmila's benefit, I had to wait for six months to qualify. Mine will start in February. My doctor actually said that I was fully disabled as of June, so it should have started in December, but the Social Security Administration, in their inscrutable wisdom, decided that I wasn't really disabled until August. I'm not arguing; I'm just grateful I got it.
So, I will be on SSDI without reviews for three years. If I am still alive and kicking and still want to be on SSDI after three years, I will need to prove why I cannot work.
After I've been on SSDI for two years, I will be eligible for Medicare, and won't have to worry about health insurance anymore. Though Medicare does not pay for medications, so you can bet that part of my princely SSDI income will go to paying for a Medicare "gap" policy that will help with medications.
That means that I need to find my own health insurance during the next two years. Before 1992, I would have been up the creek without a paddle. If I was covered under David's insurance, and I left him, I would have had to buy my own policy. Most of U.S. private insurance is set up for group policies, through employers, and it is hideously expensive to buy your own policy; let alone the fact that I have cancer, and no one will cover me.
Under COBRA, which stands for Consolidated Omnibus something something, I have the right to still be covered through his insurance company, and they can only charge me what they charge anyone else in his group. I have to pay it directly to them. David doesn't have to pay it.
Not only that, but under the Health Insurance Portability Act, (HIPA), as long as I am CONTINUOUSLY covered, a health plan cannot deny me coverage because of a pre-existing condition. That it why it is so vital that I have seamless coverage up until I go on Medicare. I will be covered under COBRA for 18 months; I will get Medicare in 24. I am juggling when to tell David that I'm dumping him so I will have seamless coverage. Argh.
Because say I have eighteen months of COBRA coverage, and then -- eek! -- I have six months with no coverage before Medicare starts up. If I find a job with insurance (most insurance at new jobs starts after 90 days), that new insurance can deny me coverage for breast cancer because it's a pre-existing condition and I don't have continuous coverage. And the thought of being without insurance for even six months is utterly
terrifying to me.

Sorry to burden you with the loathesomeness of me, but that's what I'm wrestling with these days. Merry damn Christmas.

It sounds to me like you are doing what you have to, and it is really the situation that you find loathsome.

It is, but it's nothing special or rare, at least in these here United States. I always thought I had scruples, but I guess I don't when the chips are down.