Marta's Journal

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Countdown:
  • 0 days Interferon
  • 8 days Ribavirin
  • MELD score: 23/24

31 august 2003

C's last Interferon injection happens tonight. It's too early to dance in the streets (he still has the Ribavirin to finish up) but it's definitely cause for dancing in the front yard.


Countdown:
  • 2 days Interferon
  • 10 days Ribavirin
  • MELD score: 23/24

29 august 2003

Digging through some old papers recently, I came across this selection cherry-picked from Howard Rheingold's excellent book,  There's a Word for It: A Lighthearted Lexicon of Untranslatable Words and Phrases (which is still available via Amazon, and probably other places).

It's a great book, and a good reminder of cultural differences, too.

attaccabottonai
(ah-TAHKAbo-TONE-ee;
Italian; noun)

a doleful bore who buttonholes people and tells sad, pointless tales.
farpotshket
(far-POTCH-key; Yiddish; noun)
something that is all fouled up, especially as the result of an attempt to fix in.
fierabend
(fire-AH-bend; German; noun)
festive frame of mind at the end of the working day.
frotteur
(fraw-TOUR; French; noun)
a man who rubs up against strangers in a crowd.
fucha
(FOO-hah; Polish; noun)
to use company time and resources for personal ends.
katzenjammer
(KOTS-uhn-yomur;
German; noun)

a monumentally severe hangover.
koro
(KORE-oh; Chinese; noun)
the hysterical belief that one's penis is shrinking.
masa bodoa
(MAH-sah boh-DOE-ah;
Javanese, adjective)

sociopolitically passive and unaware.
mokita
(moe-KEE-tah;
Kiriwana, New Guinea; noun)

truth everybody knows but nobody speaks.
mbuki-mvuki
(em-BOO-kee-em-VOO-kee;
Bantu, verb)

to shuck off one's clothes in order to dance.
ondinnonk
(ON-din-onk; Iroquoian; noun)
the soul's innermost benevolent desires.
papierkrieg
(pah-PER-creeg; German; noun)
complicated paperwork involved in making a complaint.
radfahrer
(ROD-farur; German; noun)
someone who flatters superiors and browbeats subordinates.
razbliuto
(ros-blee-OO-toe;
Russian; noun)

the feeling a person retains for someone he or she once
loved.
tartle
(TAR-tul; Scottish; verb)
to hesitate in recognizing a person or thing.
talkin
(TALL-keen; Indonesian; verb)
to whisper instructions to the dying.
wabi
(wah-BI; Japanese; noun)
a flawed detail that creates an elegant whole.
yoin
(yoh-EEN; Japanese; noun)
experiential reverberation that continues to move one long after the initial external stimulus has ceased.
zivilcourage
(ZEE-veal-koo-rahj;
German; noun)

the courage to express unpopular opinions.

Countdown:
  • 4 days Interferon
  • 12 days Ribavirin
  • MELD score: 23/24


27 august 2003

Still no word on the schedule for the RFA. We are both very much hoping that if the schedules work out, we'll be able to take a week in late September or early October (when the Nasty Side-effects should (knock wood) be gone) and visit some friends in Ashland, Oregon. Neither of us has been there, but everybody raves about the place, and the downtown looks remarkably like downtown Petaluma. This is actually a plus.

Ashland

In the meantime, a photo K took recently of The Reprehensible Cooper:

Cooper

Everybody say "Awwwwww" while Cooper knocks things over and climbs into the shower.
Countdown:
  • 6 days Interferon
  • 14 days Ribavirin
  • MELD score: 23/24

25 august 2003

Every morning, a reprint of a Calvin & Hobbes strip shows up in my email (it can show up in yours, too, if you visit UComics.com and set it up). This was the dialog for today's strip, which seems wonderfully apposite:
Calvin:  I feel I have an obligation to keep a journal of my thoughts.

Hobbes:  Oh?

Calvin:   Being a genius, my thoughts are naturally more important and interesting than other peple's. So I figure the world would benefit from a record of my mental activities.

Hobbes:  How philanthropic of you.

Calvin:   Well, the world isn't going to get it cheap.

Hobbes:  So what are you writing today?

Calvin:   I couldn't really think of anything, so I'm drawing some Martians attacking Indianapolis.

Countdown:
  • 7 days Interferon
  • 15 days Ribavirin
  • MELD score: 23/24

24 august 2003

The penultimate Pegasys injection tonight. Yes!

Yesterday was our 20th wedding anniversary, but we were both too exhausted to do anything about it. I taught my monthly face-to-face workshop, My Son the Ranger called with congratulations in the evening, and we hit the sack early.

Depending on UCSF's schedule for blasting music at C's tumor (someone suggested Wagner, which is perfect), we'll try to take a week or so in late September or early October, call it our anniversary present, and try to visit friends in Ashland, Oregon.

If y'all haven't checked out Marta's Garden, go take a look.
Countdown:
  • 9 days Interferon
  • 17 days Ribavirin
  • MELD score: 23/24

22 august 2003

... not that we're counting or anything, you understand.

Here's a satellite photo of the recent blackout of the northeast. Pretty impressive, isn't it?

(2 September 2003) Well, it's still pretty impressive but that's because it's a hoax. Rats.

the NYC blackout

Countdown:
  • 10 days Interferon
  • 18 days Ribavirin

21 august 2003

C's last Interferon injection is August 31st: 10 days. His last Ribavirin tablet gets washed down eight days after that. I rather feel as though he and I are crawling across the last few miles of desert, the oasis not quite in sight yet but we can almost smell the dates and the water. He has spots in his mouth again, but hey: 10 days to go, and 18 to the end of the Ribavirin. We can do this.

In the meantime, I am pleased (delighted, actually) to announce that my short story The View from Endless Scarp has been published by the award-winning on-line magazine SciFiction.com, as one of their classics. I am happy to have an s.f. story back in "print" as it were, and I think Editor Ellen Datlow is obviously a woman of taste and refinement, indeed, indeed.

Although I am a mite dubious about having written a "classic." This means that I am officially an Old Fart, doesn't it?

purple pages
13 august 2003

Dreamed last night that I was reading a book that turned into a bunch of grapes in my hand, and as I ate the grapes I "read"  the book. I was delighted, but toward the end the bunch became thin enough so that the grapes got out of order and I couldn't tell what grape/page came next, and once I ate a page it was gone. I stared at the grapes with great puzzlement, knowing there was a solution but unable to think of what it was, and woke myself up.




Send

more
Chuck
Berry!
6 august 2003

C and I spent most of yesterday at UCSF, meeting with Dr. T over the transplant issue, and with the regular study people over the Interferon-Ribavirin stuff. Much interesting news. We have one more visit to go on the study, then he should be finished with the combo therapy and, presumably, with the Evil Side Effects. We learned that, for his genotype of HepC, the clear rate is around 40%, so he is extremely lucky on that count.

Dr. T wants to treat the two identified nasty liver tumors as soon as possible, since once liver cancer has progressed beyond a certain point, no transplant is allowed. To that end, she is recommending Radio Frequency Ablation (RFA), which appears to be the current treatment of choice for liver tumors. It involves guiding a small tube into the tumor itself; filaments are deployed from the tube's end and radio waves are transmitted through them; these excite the ions in the tumor and, essentially, cook the thing to death.

We are very excited by this technology, but my research hasn't indicated precisely what sort of radio frequencies are used. I figure that the major use for radio these days is the transmission of music, so they must be planning to beam tunes into C's liver. Can't be rock 'n roll, because while that can be exciting, its not that wild anymore. C likes country and presumably so does his liver, so we can't Johnny Cash the tumors to death (although Roy Acuff might drown the tumors in tears). I'd thought maybe Julio Iglesias, but that doesn't work with the "excite" part. So, its either heavy metal, or gangsta rap.

This should, with luck, happen within the next four weeks. I'll let you know.
Marilyn






The locomotive 'Akbar' being ferried across the Jumna, 14 January 1887






Worst Journey cover







Matisse '52
27 july 2003

Recent reading:

March 2003:
  • Spoto, Donald - Marilyn Monroe (audio) Interesting and lively; Spoto developed an obvious crush on Monroe (who of us didn't?), which is especially apparent in his furious and damning chapters on her death.
  • Handke, Peter - A Sorrow Beyond Dreams Odd how a book can be about someone else (in this case, Handke's mother) and still be about nothing but the writer, word by word, sentence by sentence, page by page.
  • Bourke, Angela - The Burning of Bridget Cleary Ireland, the changing face of, place of women in, superstitions about, class structures.
  • Frazier, Ian - Great Plains Spotty
  • Auster, Paul - In the Country of Last Things Awesome - a story about a young woman's voyage to find her lost brother in a country beyond salvation. Relentless and deeply envisioned.
  • McGregor, Elizabeth - The Ice Child Not good, full of coincidences and gaping plot holes, and even my interest in the ill-fated Franklin Expedition of 1846 didn't redeem the book. My gut feeling is that this is a book where the author became so fond of her characters (or perhaps of her audience's requirements) that she did violence to her own story by refusing to allow it a logical concusion. God knows McGregor is not the only author with this failing.
  • McMurtry, Larry - Paradise My dyspeptic opinion.
  • Auster, Paul - Leviathan I read this because I thought In the Country of Lost Things was so fine, but I was disappointed. I can only take so much young-man-in-existential-despair before my pitching arm starts to itch.
  • Kistner, Alzeda Carlisle - An Affair with Africa (audio) Nerds in the bush hunting not for ants, but  for the bugs that hang out with ants. So: bugs, native bearers, bewildered left-over colonial types (a recurring theme is how well this research station/infirmary/school was run when white people ran it), and much of it unintentionally funny.
  • Auster, Paul - Moon Palace See above re Leviathan.
  • Austen, Jane - Emma (re-read) Not my favorite Austen, but almost.
  • Burgess, Anthony - A Dead Man in Deptford Excellent 
April 2003:
  • Roessner, Michaela - Vanishing Point Science Fiction centered around the Winchester Mystery House in San Jose, California, some time after most of the population simply disappears.  Well done.
  • Forster, EM - Howard's End (audio) Silly, obvious, pretentious. One of those books where I wanted to reach into the text and dope-slap most of the characters.
  • Harte, Bred - Luck of Roaring Camp & Other Stories (audio) Interesting to listen to a batch of Harte stories all in one lump. They are stuffed with the expectations and assumptions of their time, to a far greater extent, I think, than Twain, because they lack Twain's fine, fierce social eye. Twain's stories don't seem dated, but these do. Charmingly so, but still...
  • Hazzard, Shirley - Transit of Venus Reminded me of Howard's End - this isn't  a compliment.
  • Theroux, Paul - The Great Railway Bazaar (audio) Read by Frank Muller - stupendous. Muller's voice seems to have been specifically made for reading Theroux's books, but as far as I can tell this is the only one he recorded before being involved in a devastating motorcycle accident. There are some readers who meld so perfectly with a book that the two seem made for each other. This is one: others are Bernard Mayes' tremendous reading of Richard Henry Dana's Two Years Before the Mast, and Roses Prichard's reading of Harper Lee's To Kill a Mockingbird.  ##  I read Railway Bazaar years ago and was surprised (given my leaky memory) by how vivid some of the details and scenes remained in my memory, so that listening to this edition was much like revisiting a seldom-seen friend. I am a tremendous fan of Theroux's travel writing, cherishing his dyspeptic view of the world and his plain-spoken hatred of hypocrisy and exploitation – I trust his voice and his perceptions.
May 2003:
  • McPhee, John - Waiting for a Ship (audio)
  • McPhee, John - Assembling California (audio)
  • Cherry-Gerrard, Apsley - The Worst Journey in the World Excellent - one of the best books I have read this year and high on my list of best travel or adventure books ever. Cherry's descriptions of Antartica, from the auroras to the long winters in cramped quarters, are never less than vivd and gripping, and he never loses his humanity. This is the kind of book that  makes the "stuff upper lip" attitude of the English so admirable because, in Cherry's world, it works.
  • Heat Moon, William Least - River Horse (audio) I gave up: too much Ned Flanders both from the reader and the text. When some people philosophize about their travels, the results are provocative or enlightening or at least entertaining, but not here. This book illustrates one of the great draw-backs of audio books: you can't skim. Okeley-dokeley, neighbor.
  • Ruff, Matt - Set This House in Order Pretty good, an interesting conceit, nicely written. 
  • Auster, Paul - City of Glass I liked this almost as much as In the Country of Lost Things, and certainly much better than the other two Auster titles I've read. This is part one of a trilogy; someday I'll get around to the other two books.
June 2003:
  • Lencek, Lena & Bosker, Gideon - The Beach: The History of Paradise on Earth (audio) Entertaining and informative.
  • Martel, Yann - Life of Pi Obvious, painfully slow for the first 80+ pages, and with a subtext about as subtle as a diesel locomotive. Finished it because it was short, the writing is okay, and I was curious to see if Martel pulled something worthwhile out of his fictional hat at the end. He didn't.
  • Huxley, Aldous - Crome Yellow (audio) Literate and amusing, especially watching Huxley take on the eidolons of post-WWI British culture, even if most them are no longer our own. The scenes involving the serious-minded bluestocking Mary and her assault on her own virginity, are fresh and hilarious; Mr. Barbecue-Smith and his relentless "subconscious" creativity, could be pulled from speakers on today's woo-woo self-help circuit. Nonetheless, it makes me nuts that Huxley, like many of his contemporaries (and some modern writers) snobbily assumes that his readers will be comfortable with, and therefore not need translations from, French, German, Latin, Greek, Urdu, Finnish ...  The book is, by the way, available on-line.
  • Byatt, A.S. - The Matisse Stories (audio) I like her short fiction: solid and dependably literate. The "dependably" can be a problem sometimes, though.
  • Fford, Jasper - The Eyre Affair Fun, especially for those (vanishingly rare) creatures with a taste for and memory of English literature, because the quotes and characters come fast and furious.  I have to admit that part of my amusement with this book lies in reading comments in some online fora from people who like to boast that they "got" more of the references than did others. Competition reading strikes again!
  • Whittemore, Edward - Sinai Tapestry Compelling, funny, heart-breaking. Whittemore was a genius; this is solid Magic Realism without any of the kitchen details that plague too many girly-MR books. 
  • Clinton, Hillary Rodham - Living History Yawn.
  • deBotton, Alain - The Art of Travel Deep Thoughts. Not bad thoughts, but certainly Deep ones.
  • deLillo, Don - The Body Artist (audio) This begs the question: does deLillo write while sitting in front of a mirror?
  • Byron, Christopher - Martha, Inc. A good companion piece would be Ransdell Piersen's Queen of Mean: the Unauthorized Biography of Leona Helmsley. I find it interesting how much energy people can bring to bashing women for stuff that men do without generating such enthusiastic hatred.
  • deLillo, Don - Cosmopolis A strange, funny book. I liked it much more than The Body Artist but didn't like either of them enough to plunge further into his work immediately.


24 july 2003

I clicked on Salon's main page today, and at first thought that the lead story had to do with the discovery of a new Rembrandt in somebody's attic. The lead illo was this:

from Masked & Anonymous

It illustrated a story about a new movie, Masked and Anonymous starring Bob Dylan. The times, they have a'changed -- and so have we.





USC Liver Transplant Program

For those who are interested, USC's A Patient's Guide to Liver Transplant Surgery is clear and informative. Be warned that some of the photos in the Liver Transplant Tour are pretty graphic.
21 july 2003

C finally heard from the UCSF transplant people. He "passed" the Phase 1 Evaluation, so now it's on to Phase 2 (which includes a bone scan to determine whether the cancer has spread). More good news - bad news:

His MELD score is 8, but that is without the cancer factored in. The coordinator expects that he will come out of the evaluation process with a score of 23 out of a possible 40. For each three months on the list, a patient is given an additional 2 points.  She said that the typical MELD score for transplant of a blood-type O liver is 32, so that means we're looking at about a year for a cadaveric transplant, less if we go the living-donor route.

In some ways, this length of time is a relief. He will be finished with the Interferon-Riboviren treatment in seven more weeks, and the horrible nasty side-effects should dissipate soon after the treatment ceases: that means he should be back to his usual sunny, optimistic, energetic self. He's still feeling good and save for the liver problems is otherwise healthy; we may take advantage of this by scheduling a vacation later in the year.

The CT scan showed seven lesions on his liver, of which two are of concern, but the good news is that the one detected earlier hasn't grown, and the doctors think that all of these lesions have been around for a while and are pretty stable. Still no explanation for why the CT caught these while the supposedly more sensitive MRI didn't, but at least they were caught.

So we're looking at a considerable stretch of time, fairly healthy time we hope, during which he'll attend AA meetings* , be subject to random drug tests, and be barred from taking medications without specific consent from the liver transplant team**.

So I guess we're on a level track of the roller coaster, taking a breather, waiting for the next eruption of craziness but grateful, in the meantime, for the break.

= = = = = = = = = = = =

* This is a cast-iron requirement. I wonder if they ask this of life-long tee-totallers who come down with liver cancer, and if so, what these folk think of having to attend meetings where others talk about the awful stuff they did while drunk.

** I just hope that he doesn't need to have any heavy dental work done, since most pain-killers are on the  "forbidden" list. 

20 july 2003

Still waiting. Still fidgeting about it.

Among the papers that the hospital gave C was a list of some of the drugs he may have to take after the transplant, and a suggestion that he take it to our local pharmacy and ask them to make sure that our insurance will cover the drugs. He will have to take some of these drugs for the rest of his life.

Out of curiosity, I checked prices for these at drugstore.com. Here's a sample from that list. Are you sitting down? Have your heart medication handy? Okay, then:

Neoral 
100 MG - 60 tabs
$478.18
Prograf
1 MG - 120 caps
$377.99
Rapamune
1 MG - 30 tabs
$199.55
CellCept
500MG - 100 tabs
$523.98
Pegasys
180MCG/ML solution - 1 vial
$328.99

Pretty scary, isn't it? If I lose my job and my health insurance... I had a bad day there, until I remembered that if necessary, I can get health insurance through the National Writer's Union, although I'm not sure if they offer prescription drug coverage.

Deep breath.

Onward.


16 july 2003

Another full day at UCSF yesterday undergoing the Phase I Evaluation for liver transplant. I think we were marched around to see every single person on Parnassus Heights, including Dr. Norah Terrault, who has overseen C's HepC treatment -- we are big fans of hers. We saw a social worker, a transplant surgeon, the transplant coordinator ... C peed in a cup and drank horrible stuff so they could take more CT scans of him, and phlebotomists stole his blood, and at some point real soon we will have a  MELD number for him, which will determine his place on the transplant list. Real soon now. As soon as the Transplant Board checks everything out.  Right.

Have I mentioned recently that I am not a patient woman?

It was a day of good news and bad news: the bad news is the cancer, the good news is that he's asymptomatic; the bad news is that blood types are a primary factor in finding a match and C's blood type (O) is the toughest to match, the good news is that he's not in desperate straits; the bad news is that his good health contributes to a lower MELD score; the good news is his good health. The good news is that since the HepC virus has cleared from his system, he may not have to take Interferon - Ribavirin after the surgery; the bad news is that maybe he will after all (we have about 8 weeks to go, and are soooo looking forward to the end of this treatment). The good news is that if a liver does not become available for him, the living donor transplant is an option; the bad news is that this is very, very hard on the living donor and therefore something we would look to only if other options failed. And so on and so forth.

Patience is not my long suit.

Among the sights that stick with me are seeing people with relatively new livers, sitting in the clinic's waiting room for their turn at the docs. They sat in wheelchairs, and each one had a large tackle box, full of the medicines that a new transplant recipient has to take for the first month. The good news is that the medicines are available and the liver is a relatively easily transplanted organ; the bad news is that C will need nursing care 24/7 for the first month after discharge. The good news is that K and B, her gentleman friend, are eager and willing to lend a hand in all this, so that while I may have to take two weeks off from work (the week of hospitalization after the surgery, and at least one week at home), it's possible that I may be able to return to work part-time for the rest of that first month. The even better news is that I have the best boss in the history of employment, and our new secretary/receptionist is a gem, so taking time off should not be too great a problem.

I am not a big fan of delayed gratification, but you knew that of me, right?

The good news is that if our insurance company decides that they will cover this transplant, they will cover it 100% (there will still be a co-pay for the meds, though). This is what you get when your premiums are over a thousand bucks a month. The shocking news is that the procedure, when all is taken into consideration, may cost around a million dollars.

The bad news is that it is almost 9:00 pm as I write this, and we haven't heard about the MELD score and I don't know when we will.

Damn.

9 july 2003

All day at UCSF, and then the crawl home through rush-hour traffic. Tiring.

So here's the data bit that most interested me today: of the three lesions on C's liver, two may be cirrohotic scar tissue and one is pretty definitely cancerous, but they were all detected not via MRI, but by a CT scan. The MRI is supposed to be the more sensitive of the two, but C has had a bunch of these over the past years, and none of them indicated a lesion. The CT scan was prescribed because his AFP  (a protein usually associated with liver cancer) level went down and the docs decided that they didn't have to keep that close an eye on things. Another interesting item: it's likely that the lesions have been present for  quite a while, and at least from the beginning of this treatment. The radiologists have no idea why the previous MRIs showed nothing while the CT scan did. His AFP level did bump up a little at last month's blood tests, so they're looking at it again this month.

The first level evaluation, the one that tells us whether we go on to the next stage in this transplant business, happens next week and will go on from 7:30 am to 3:30 pm. I'll take a big, big book.

2 july 2003

After a day of (on my part) gibbering terror following UCSF's report that our new health insurance "couldn't find us in their records," we have been found, and the health ins. people said they will cover the early evaluation stuff, and then they'll look at the evaluation results and determine whether they will cover the transplant itself. So my gibbering terror has abated a little, but it will come back. Trust me on this one.

We are scheduled to spend a full day at UCSF on the 9th, first dealing with C's usual monthly HepC study appointment, then visiting a shrink to evaluate whether C is sane enough to qualify for a transplant -- at least, this is what I imagine they are up to. The shrink will presumably understand that C's current state of mind (Hi, Adrian!) is of pharmacological origin, and maybe even be able to fine-tune the various drugs he's taking (these are drugs to deal with the side-effects of the drugs prescribed to deal with the side-effects of the drugs prescribed to deal with the HepC) so that he's not quite as ... eccentric as he is these days. On the 15th we have another full day of evaluations scheduled, after which we should know more about much.

C's attitude remains, for the most part, sunny and upbeat, although he has taken to proclaiming  that he has lesions and we should therefore wait on him hand and foot (yeah, right). He thinks I worry too much. I think he doesn't worry enough. Between the two of us there is a happy medium that neither of us reaches, but I will admit that he's happier about it than I am.

For those who are interested, here's a link to the information UCSF hands out on its Liver Transplant Program, which seems pretty comprehensive. 


it's a great life
if you don't weaken.
1 july 2003

C's doctor called late yesterday afternoon with the results of the Tumor Board meeting. All in all, it's good news. Of the three lesions, they are not particularly concerned with two but want to keep an eye on the third. However, since C's liver was in pretty shabby shape to begin with, and given that there's a probability that the third lesion is cancerous, Dr. Terrault has recommended that he be put on the transplant list - the possiblity of a cancerous tumor could place him at the top of the list.

This is, on the face of it, splendid news. Rumor has it that liver transplants are among the easiest and most successful of the organ transplants; aside from his spotty liver C is in very good health and relatively young; he is virus-free and alcohol-free; and Dr. T has said that he is "an excellent candidate." Within the next couple of days, we will get a call from someone who will schedule a full day's appointment at UCSF, during which C will be evaluated and we will learn more about the procedure, including (ulp) financial details. In the meantime, he continues the Pegasys-Ribavirin therapy to nail down the lid on the HepC virus, which means that Adrian Monk remains enshrined as the current culture hero.

So I'm off to spend my day alternately generating the monthly billing for the office, and spelunking the Internet for information on liver transplants. 

My first mother-in-law (whom I did and still love) was fond of quoting an old Pennsylvania Dutch aphorism: It's a great life if you don't weaken. So here we go, not weakening again.