The satellite view of a storm whorl mid-Pacific took but an instant to snap and a full minute to paint onscreen. In a later shot the coil relaxes landward, a third has it swooping onto California. Run in a loop they show rain slamming the coast again and again.

An image of a day takes a day to load into memory while the day itself spills through the world's fingers. A year takes a year and that fractional second the clockmasters use to shim the months into a calendar sash. There's no help for it, a decade takes a decade to shoot, however fast you rerun it.

Watching frames stored so far I see the gesture I'm making; here I am waving, and here reaching to touch your cheek.

Greg Keith 2/16/98     (Scroll down for more of Greg's writing.)

Wednesday, March 25, 1998
Been Busy

Susan had "Beloved Friendly Giant" and the wedding date engraved in my ring. When she was a girl her mother let her watch a program called "The Friendly Giant", a local production on KQED. The opening scene always started at the giant's boots and panned up, way up. She told me early on that I made her think of that guy, not just my dimensions but my voice.

I had the date and "One White Flower" engraved in Susan's ring. On two or three occasions, also early on, when I asked her what she'd like for a gift she told me, "A single white flower." I think it was a literary reference and I took it as an image of clarity, a purity of recognition. The point being to heighten a moment, not overwhelm it with lavish display.

We tried to keep the display less than lavish for our wedding too and for the most part we succeeded -- the ceremony itself took just under five minutes. At the party the next day we figured that one or the other of us managed to spend between forty-five seconds and three minutes with each guest.

I'm not entirely joking. In my exhaustion after the party I felt sharp grief for all the missed conversations, so many people I had hoped to talk to and hadn't. By Monday I was feeling better about just having seen so many friends and loved ones, but still saddened by the sense of connections too little honored. Moments don't really differ in size so the big ones get almost painfully crowded.

Susan and I aren't taking a real honeymoon, just sweet little moonlets, brief honeymeteors. My low energy and my medical schedule are the main barriers to going away. I'm having to take naps.

As for the other effects of chemo, I've gained back most of the weight I lost to diarrhea in the first week but then I had a little bout with nausea yesterday and didn't get down the calories I had hoped to. Hairfall is accelerating, including pubic hair now. Tumor growth may have slowed some but hasn't stopped (I don't think it's expected to after one treatment). I had over a week in which I didn't have to take any painkillers, though the aches and throbs and momentary sharp pains in the side of my head are back now. One of my frustrations is that the over the counter analgesic which I find most effective and long-lasting, Alleve, also thins the blood and I can't take it now because the chemo is already wiping out my platelet production. I can take Tylenol because it doesn't affect the blood but it barely works for me and wears off after about three hours. It's also toxic to the liver and I have this idea that I'm getting all the toxins I need in the form of taxol and platinum. Ah well.

One other bit of writing I did this week was in response to a letter from a friend urging me to consider Jesus now that life and death issues are so literally in my face. This is not the first time this suggestion has been made so I took a little time framing my reply. If religion bores you or offends you, don't go to that link.

Wednesday Night, March 25, 1998
Dis Appointment, Dat Appointment

Well, I said I'd report my medical consultations in pursuit of treatment alternatives and I had one today in San Francisco. I'd been reading about some tumor-shrinking successes attributed to the antiangiogenic effects of Thalidomide and had learned of a doctor willing to try Thalidomide on a friend with a different type of tumor than I have, a doctor who seemed more willing to try things than the folks I'm seeing. So I made an appointment. Susan went with me. We both liked the doctor and he basically agrees with the folks I'm seeing. This is a very tenacious and well-established cancer and chemotherapy may help a little. Thalidomide is not a good option for me since my tumors "aren't terribly vascular" so they're not as susceptible as some to arterial siege. Later we saw his colleague who is more of a head and neck specialist and ticked off a few more items. For one thing, Thalidomide is only a weak antiangiogen, not like the kickass compounds now in the FDA pipeline, but these have not been tried against my type of cancer. Interferon has been tried and doesn't work. The interleukins have been tried and don't work. TIL-cell amplification -- the kind of immunotherapy where they grow up big supplies of your own lymphocytes and put them back into you -- has been tried on this kind of cancer and has shown no benefit at all. I've asked about these things before but this is the first time I've heard of specific places and programs which have tried them on squamous cell carcinoma and had them fail consistently. It is an odd comfort to know the name of the doctor who tried the TIL-cell trick at Sloane-Kettering, even though he found that it didn't work. At least we've turned that stone over.

I get my next chemo this coming Monday. It is not encouraging that things are still growing, but we'll try at least one if not two more doses before deciding how well or how poorly it's working.

Wednesday Night, April 1, 1998
Round Two of Chemo: Messy Stuff

Three weeks ago they put my first round of chemo in through an IV in the back of my left hand. This time I asked the nurse to use my right arm, balance the damage. She found a nice looking vein and we managed to get a liter of saline, a cluster of premeds, and an hour's worth of the taxol in before the vein blew out. The nurses that gave me my first round used that term, said there was some danger they might "blow out a vein". This nurse kept saying it had "infiltrated" when I said "blown out" but either way a swelling the size of a peach half formed on my the inside of my forearm. Stung pretty good too, the first thing was to put an ice pack on it.

She placed a new IV on my left hand and that handled the next two hours of taxol, an hour plus of saline hydration, a half hour of cis-platin, followed by a four hour saline flush and the diuretic mannitol. And diurese I did, every twenty minutes or half an hour through the night. I found it easier to let go into the urinal while standing beside the bed than while lying in it, an ease I imagined came as much from a psychological resistance to wetting the bed as from any mechanical arrangements of muscles. After the shift changed the morning nurse wrapped my IV in warm towels to soften up the mannitol which was beginning to accumulate in a kind of sludge inbound of the IV needle. She also said to wrap the site of the blowout on my right arm with warm towels when I got home.

The theme seems to be fluid dynamics, rates of flow and channel capacities. They gave me something to prevent nausea so no fluid went out that way but four or more times during the night I also tried to defecate and nothing came out. I'd been taking tylenol with codeine for a few days before coming in to the hospital and they'd given me vicodin while there and this combination of anodynes had plugged me up. We don't say "anodyne" much anymore, we say analgesic, pain killer. The old-fashioned sound of "anodyne" gives it a romantic feel.

As a kid when I lived in Southern Oregon on the dairy we seldom went places, the cows couldn't change the schedules they'd been put on, but when visitors came through from out of state we sometimes skipped church on Sunday and took them to see Crater Lake. Even in the spring snow piled up beside the road, successive plowings showing up in the layers of volcanic gravel and pumice embedded in the melting snowpack.

I would have been seven. My twenty-eight-year-old brother came to visit and we took him to Crater Lake. I had to pee really bad but Papa didn't want to stop. Somehow my brother convinced him to stop for him too. The two of us stood beside the car and I was impressed by how long and copious his stream was. I remember he irritated Mama by saying, as we got out of the car, "Just call me Pepe, I'm all urine." This was too close to a dirty joke for her. I remember it felt complicated, thinking it was funny, thinking he was crude if Mama thought so, really glad to get to piss. It was only later that I would find her exaggerated disdain for direct references to the body sad and ridiculous. In my teens if I went from the bathroom to the bedroom without clothes on she worried about the neighbor lady seeing me naked as I moved through the house. Papa would say, "If she hadn't seen it before she wouldn't know what it was anyway."

Yesterday after I got out of the hospital we stopped at Susan's for what was going to be an hour or two while she took care of a few things in Palo Alto before we came back to Santa Cruz. My constipation had turned into impaction. I had heard that this could be quite painful and it was. It took five and a half hours and a mix of suppositories and enemas to break loose. One added frustration was that after a while something about the muscular tensions made it impossible to pee too so I ended up with enormous bladder pressure. We talked to the hospital staff and they were concerned and sympathetic but they didn't suggest coming in. Mineral oil enema is the best thing, not the phosphate kind. Here's an image, me naked and wispy-haired and skinny on my knees on Susan's bathroom floor, a bowl under me in case I could suddenly let myself pee, me squeezing mineral oil out of the little bottle into my rectum and then just holding still as long as I could. Susan wishing she could help somehow, remembering her own bout with impaction after her son was born.

Today has been sleep and more water and beef broth and miso and resetting my anodyne schedule and more sleep. It's oddly encouraging that the chemo is making the tumors hurt so much, as if the attack might be working.

When we'd get out of the car at Crater Lake several chipmunks would come running out to investigate what we might leave, scampering across the rocks and the patchy snow. I didn't have anything for them that time we stopped to whiz but another time I gave a few of them salted peanuts and some aunt who was seeing the Lake for the first time told me that that would actually be bad for them. I remember thinking how hard the chipmunks lives must be, living underground so much, frozen in during the winters. They sometimes fought over the treats people threw them. They had very sharp teeth.

Sunday Night, April 5, 1998
Secondary Effects

As expected, this round of chemo has hit harder than the first. On a graph of my okayness, the curve from Monday to now looks the same this time as last, but shifted lower on the chart, going down and wavering, then climbing fairly steadily back up. I have been quite happy to accept Susan's ministrations and her driving this week. Still, if not exactly bouncing back, I do seem to be bobbing up toward some surface. The pain mentioned in the last update, described as the chemo's attack on the tumors, has subsided somewhat. The taxol aches come and go. Symphonies of ear-ringing strike up from time to time and seem to play right there in the whorls of my ears and after a while recede into some singing or sighing that is clearly just neural noise. Neuropathic tingles and pains flair easily. None seem permanent. The most persistent, which I don't feel at the moment, has been a dull burning sensation in the nailbeds of the middle and ring fingers on my right hand. Most recurrent has been a tingling numbness in the little and ring fingers of my left hand. When it hits I have to take my ring off or shift it to my right hand.

Easily ninety percent of the hair on my head is now gone, I've just kept combing it out. I had thought that I would shave it when it got to a certain sparseness but I find myself curious about how fast and how completely it falls, as if that were an index to how effective the chemo might be, though I doubt the correlation is so simple. The effect, when I happen to notice it in a mirror, is quite loony looking. I may go ahead and shave it this week. Body hair seems stable for the moment.

The next treatment is scheduled for April 20th. Before they give it to me I'll get examined and have the tumors measured to see if I'm getting any benefit. This time the x-rays showed no growth in my lung since the previous chemo, a positive. On the other hand, in the last month there has definitely been growth in the one beside my eye and some growth in my cheek. Yeah, a negative.

This week has featured quite a bit of napping and I feel the need to break off now and go sleep. Writing has been sparse. Somewhere in the distance is a thing I might want to say but getting to it or getting it to come to me, how would I do that exactly? Puns have been a little more forthcoming. At one point last Monday night in the hospital I lay awake with the IV running and thought, what a long strange drip it's been.

Sunday, April 12, 1998
Fulltime Halloween

Hairfall had paused for a few days, leaving me with wisps, Dr. Seuss tufts standing out from my head. Susan tells me I look like a baby duck. I have photos of me without my goggle, my droopy, tumorous right eye presented directly to the camera. It would challenge any makeup artist to reproduce the meeting of the swollen the collapsed in my face, my nose pulled sideways, the left eye bright and clear but my mood hard to read. In daily conversation I act like I look normal. People cooperate with me and meet my gaze but there's no real pretending that I look anything but weird. Today it seems hair has started falling again. I wore a hat this afternoon to ward off sunlight and this evening to keep in warmth. I made a point of taking it off part of the time so it didn't feel too much like I was hiding something.

My blood numbers from last Thursday aren't too bad, which is not in itself the best news, since I want my fast-growing cells to succumb to these poisons. I did not used to know the meaning of blood cell counts. Normal white cells counts range between four thousand and eleven thousand per microliter. At 2.8K, mine is not dangerously low but my ability to fight off infections is reduced. The numbers should have started coming up over the weekend.

I am trying to get the oncologist to move my next treatment three days earlier, to the 17th rather than the currently scheduled 20th. I have had a reading scheduled for April 24th since last summer some time and after this last round I realized that four days is not enough time to recover from the chemo before the reading. In case anyone's interested, the reading will be at Louden Nelson Community Center here in Santa Cruz (at the corner of Laurel and Center Streets). It will start at 7:30 P.M. and will be a double bill. My co-feature will be Maude Meehan, one of the first friends I made in Santa Cruz when I arrived twenty-two years ago.

I feel an urge to describe last week in some detail but one thing I'd have to report (or, rather, repeat from last week's update) is that I find sustained periods of writing difficult. So, I'll attach the two pieces I worked on sporadically in the last few days.

The first piece is a revision of a poem I wrote three or four years ago. I came to revise it after my recent religious wrangles, traces of which have appeared on this page. In those discussions I have been cast as a sheer materialist and I have, I suppose, encouraged that perception by calling myself a Thingian in earlier postings. I coined "Thingian" after saying that the simplest statement of spiritual truth I know is "Things mean." I want to emphasize the "meaning" side of that. I'd been ranting to Susan about the history of spurious substances, phlogiston, caloric, the sidereal ether, and so on. I thought of this old poem and tracked it down to show her. Lots of people know about phlogiston, the special firestuff inside things that used to explain flames and burning. Fewer folk know its cousin "caloric" (the noun, not the adjective), though caloric lasted longer than phlogiston, in part because the math worked better - heat does look like a flow. The last section of this poem is very silly. I pretend to be arguing with someone who has asserted that love is a subtle fluid they call "philoric", but of course, no one actually asserts that. I made up the word "philoric" myself but not the metaphor. It's very common to hear people say that love flows, wells up, washes over us, drains away, dries up. The revision started from a suggestion of Susan's regarding pronouns. Here it is.

Refuting Philoric

When heat was thought a fluid called caloric people said
steel soaked up a lot of it. Air clearly sopped up less.
Cold things, standing emptier than hot things, shrank slightly.
Now heat's a song and dance every little thing already knows
and ice just croons more quietly than steam.

Once every mood admixed four humours, melancholy,
choler, blood, and phlegm. Now squalls of peptides
blow onshore amygdalar neurons, serotonin mist sweeps into
synaptic coves; emotion a climate built of such weather.

Now just the one energy matters, eternal delight or not
it equals mass times lightspeed squared. No things but in
process of becoming. Even a virus, thinglike as can be,
looks mighty procedural compared to a miasma - viruses true
spells, long nucleotidal words hexing cells to repeat them.

Opening up more structure and surprise
inside, the world happens more than is.

Thus, it's hard to believe in philoric, to think love a liquid
after all, a subtle dew condensed from quantum twilight.
The numeric measure of this flux requires new arithmetic, goes
beyond the real and imaginary parts of the merely complex
to raise every value to a special power, an exponent called,
whimsically, a divine number. The sole attraction of this
specious theory is its explanation why, when philoric backs up
and love collects in the body, we feel so ready to burst open.

The other piece I worked on this week may be nothing but notes for a poem I'll never finish. Here's that.

Memorabile

In one Pompeian fresco, the woman of the house holds
a hinged tablet and touches the handle of a scriber to her chin,
the man holds a scroll with a red feather dangling. I don't know
what they meant by these things but their friends did.
Paint still bright on walls retrieved from ash and tuff.

Twenty-nine years in box and drawer, the color snapshots
had gotten wet along their bottom edges and stuck together,
haphazard chapters a few images thick. The negatives long gone.

Not my wedding but that figure in the blue-flowered dress is
now called my ex-wife. I remember playing that guitar there.
Now I have this guitar here and seldom play.

Pulling the pictures apart strips dyes off the paper,
leaves a mist on the ground of every image.

And that brown, flowered shirt she made me. God that haircut.

Before Daguerre the rich had etchings and drawings. Fuss once
got made over the difference between these and cheap lithographs,
though mold and water mark them all. Memorobbery.

Packrats stash bottlecaps, feathers, mica flakes, bright twine,
have been known to leave a brass bullet shell in trade for a gold ring
put on a window sill overnight. The trait goes so deep in their species
we've named them for it. Among bower birds, some like any brilliance
on their courtship altars, the stages where they dance, others choose
mostly blue things. People save things for their shine, and trade them,
and show them off, but who else has keepsakes?

The bride said she regretted giving that dress away. She
points out one woman and blurts, "He fucked her right
after the wedding." We thought she meant that very day.
No, within months. The marriage over in two years.

The little dog too frail and blind to leave his yard
drags his old leash through the house, not asking to go out,
head high, apparently recalling fine walks he's taken.
He can use mementos but relies on his mistress to save them.

People value the memories things trigger, keep objects
to spread the signifying beyond the borders of the moment.
Videotape, lasercut portraits in headstones in Azerbaijan.
We keep increasing the democracy of commemoration

That urge deep in our species, stashing, caching,
not something a dolphin could do, smart as they get.

Before we drew pictures we scratched counts on bones
and if you knew the scratches meant new moons
you could know the rest again. Making marks to keep
track of talk a later version of that trick.

I remember those long dresses being in style. My then-wife
already does not look happy.

The latest shapes in silver nitrate salts yield the sharpest edges yet.
Acetate films wait in the canister dark on the storeshelves, each
snail of unexposed emulsion poised to sizzle with new photons.
So fragile for the weight of the lives we want them to carry.

I don't know which matters most, that they tear so easily or last so long.

The difference between ranting and raving. I don't rave much.

Wednesday, April 15, 1998
Day to Day

A friend wrote to say that what most interests her about my web updates are the day-to-day details. She finds the poems and the more loosely associative prose less compelling. Okay, I could talk about pills.

I've been taking an anti-nausea drug called Compazine, one pill every eight hours if needed. I haven't needed it the last three or four days. The insert that came with the first prescription said it had "anti-nausea and mental effects." I never figured out what mental effects they meant and I didn't notice any. I take two milligrams of Ativan every night before going to sleep. This wa originally prescribed as a muscle relaxer but it has definite mental effects, making the world a bit remote and details very easy to let go of. It also turns out to have anti-nausea effects and can be dissolved under the tongue and absorbed by the blood vessels there in case the nausea is bad enough that even a sip of water could, so to speak, turn the tide.

Then there are pain pills and my analgesic rhythms. Tumor pain had come up in the days before the last chemo to a level where I needed Tylenol with codeine regularly. For twenty-four hours before the chemo I was taking a steroid compound called Dexamethasone. As well as making me feel sped up, that seemed to eliminate pain. Pain flared up for two days soon after chemo then fell to nothing or nearly nothing for a couple of days and has been slowly coming back over the last twelve days. Now if I fail to take my Percocet at regular four-hour intervals I regret it. Last night I set the clock for 4 A.M. because waiting until the pain wakes me means I then have to wait for the pill to kick in before I can get back to sleep, a fairly unpleasant twenty minutes or half an hour.

Yesterday I was alone in the house and barely moved off the couch all day. Sleeping and reading and popping pills. Susan has been making me soups and gourmet gruels but yesterday I just drank Ensures. I felt relieved not to have to go out on errands, though sorry that my reserves are depleted to the point that I didn't want to.

I feel a certain reluctance to put up unrelentingly negative updates. Some people have wondered if I'm in denial about the emotional darkness in all this. I don't think so, but then I wouldn't, would I? Some days it looms larger than others that I'm apparently dying. Much of the process is just simply interesting. I do laugh sometimes and occasionally make jokes myself. Last week in support group a guy with a similar cancer to mine said the radiation to his head is disrupting short term memory and asked me if I had experienced that last summer. I said, "Not that I recall." That got a laugh, though it might not have deserved one.

Today I thought of a story but the names won't come, even the outcome seems to have vanished. A mythic Greek King punished for foolishness by some god or goddess who gave him donkey ears. He always wore a crown in public and forbade his barber, on pain of death, to tell anyone. The barber was no doubt a slave so the king's death threat was real. After some while the barber couldn't stand it. He went to the river, scooped a hole in the bank, spoke the secret into the mud and covered it up again. In the spring when the rushes grew up beside the water the wind blew through them and they whispered to all passersby, "The king has ass's ears."

The king somehow knew immediately that the barber was at fault and had him executed. Or maybe something saved the barber. I forget. Gaps in memory aren't labeled by cause, chemo made this, this was lost to age, x-ray blew this open.

The resonant part of that story right now is the need to say a thing I don't want to say. It's not a secret. There's no penalty for speaking. I don't want anyone to do anything about it, and no one will be surprised to hear it, but it feels like something I'm whispering into a hole I've dug in the page: Gregory feels sad and scared today.

Saturday, April 18, 1998
Help From My Friends

My request to reschedule my next chemo three days earlier met resistance from the oncologist and then turned out to be moot Thursday when my blood test showed my absolute neutrophil count still too low from the last treatment to give me the next. Neutrophils, I've learned lately, are the main bacteria foragers among the white blood cells and the condition of having too few is called neutropenia. I'm on the verge of neutropenia but the oncology nurse expects my levels to come up over the weekend.

While I was in the clinic getting my blood drawn I also asked about renewing my Percocet prescription and getting a longer-lasting form of it. The nurse decided that I should shift analgesic gears and go on the lowest available dose of MS-Contin, which is 12-hour timed-release oral morphine. She also advised me to continue to use the Percocet for what she called "breakthrough pain". I hadn't heard the term but knew what she meant. Both Percocet and MS-Contin are "triplicate drugs, " meaning that they are tightly controlled and the prescription can't be called in over the phone. Each doctor has a special pad of forms to fill out which the patient then delivers to the pharmacy. The MS-Contin comes with elaborate warnings about causing drowsiness (Morpheus, god of sleep, right?) so I decided I wouldn't need my bedtime Ativan to help me get drowsy. Mistake. I lay awake most of the night. Not thrashing or distressed, just awake for long periods, hearing the clock tick off seconds, Susan's steady breathing. Far off three A.M. truck engines revved as they downshifted going into the turn. Turning my foot over to take the weight of the blankets off my ankle my toes swept loudly across the sheets. By seven the leaf blower opera took the stage in the surrounding blocks. Dueling arias in the alley, growling choruses in the office parking lots.

This reveille went on for nearly three hours. The noise usually wakes me but this time I slept through much of it. Today my nurse friend, Kate, told me on the phone that a small percentage of people do speed up in reaction to low doses of morphine. Come Sunday I'm supposed to start taking steroids to forestall allergic reactions to the taxol. Last time that sped me up and reduced the tumor swelling enough to relieve pain. If that's true this time, I may go off the analgesics again and have to figure out a new balance next week. Quite the chemical roller coaster.

My friend Tola sent mail after my last posting telling me that the king with donkey ears was Midas and that Apollo gave them to him. In one version Midas fled when his secret came out. In another he literally died of shame. Either way the barber survived.

Another friend, Fred, sent mail asking about the status of my book. It's now in its third round of proof reading. Susan is helping a lot with this since I'm not always in the best shape for it. This week she picked up the dummies, which are the actual size of the finished book, bound with covers printed from the digital files. When I say "dummies" people ask if I mean galley proofs. I've been saying "Not really" and "Sort of." I finally looked up galley proof. A galley is a steel tray used to hold set type before it gets loaded into the press as pages and real galleys are proofs taken off of this type while it's still in the tray. So, in the sense that the PageMaker and Illustrator files are like trays of type, the reference for the actual order of characters to be printed, yes, the dummies are galley proofs. After this the publisher (SLG Books, a small press in Berkeley) will send the files to the printer in Hong Kong.

Steven Gulie, the friend who had the idea and has put out all the effort to produce the CD, will continue work here and the books and discs will meet in June. The book alone will be available at $14.95 and the book/CD combination will cost $24.95. The CD itself will be dual-use, a 15 or 20-minute sample of the readings will play if you put the disc in a standard audio CD-player, and the CD-ROM will have the entire contents of the book in both text and audio, along with a few video clips digitized from a tape of me reading last April. This will be formatted essentially like a web site and either Netscape or Internet Explorer will let you browse it. The dummies don't have discs in them but they're close enough to the real thing to get sent off to the Library of Congress and the Books In Print people. When the real real thing comes out they'll get copies of that and throw the dummies away.

And yet another friend, Marsha, found an interesting clinical trial in the National Cancer Institute database. Here's some text taken directly from that NCI listing:

This is a clinical trial (phase II, multi-center, open-label, randomized study) to evaluate the effectiveness and safety of two treatment regimens of Ad5CMV-p53), a gene therapy that is injected directly into the tumor in patients with recurrent squamous-cell cancer of the head and neck.

The Study

This is a gene therapy study using the p53 tumor suppressor gene. Many researchers believe that gene therapy offers future potential in treating human diseases, including cancer. The p53 gene is responsible for orchestrating a complex system of responses in a cell's normal function. When the p53 gene is missing or damaged in a cell, the cell can misfunction, causing cancer to occur. It is believed that reinsertion of functioning p53 gene into tumor cells can halt cell division, allowing DNA repair or can send cancer cells into an autodestruct sequence known as apoptosis, or programmed cell death.

This is interesting first because it's aimed at exactly the kind of cancer I have. Most "promising approaches" make their promises about some other kind, so my inquiries get shut down quickly. Secondly, it's a phase II trial, so even if I can't get into the study Marsha found, it may be possible to get a sympathetic doctor to administer one or the other of the two existing regimens to me (assuming also that Ad5CMV-p53 is available or can be acquired for compassionate use).

For sounding so good, this is all still quite vague. There are many steps between learning of the trial and actually getting into it or actually finding a doctor willing to administer the treatment, but it's something I can explore. The timing is particularly good for me since I suspect that they will tell me Monday that the taxol isn't working.

Monday night, April 20, 1998
Debulking Ahead

Today's blood tests showed that my levels had come back up enough for me to stand a new round of chemotherapy but I didn't get it. The growth in my eye-socket tumor has exceeded the protocol's threshold for keeping me in the taxol study. The oncologist announced this a little after seven this evening. The odd satisfaction of hearing my guesses confirmed has largely worn off by now, midnight. I'm in the living room trying to type quietly so Susan can get to sleep, though my noise may make no difference. A keyboard is just another intermittent traffic like the cars shooshing by on Mission Street or the refrigerator muttering its long sighs off and on in the kitchen all night. Loud as the ringing in my ears gets now, it will wake no one else and has only wakened me twice at most.

Susan and I spent roughly five hours at the oncology clinic today, four of those waiting in several different rooms. We had brought books and read many pages, some with scant attention. Once we had actually converged in a room with the oncologist and his calipers, he made his predicted declaration. He explained that all the surgeries and the two rounds of radiation have damaged the circulation around my eye too badly, the chemo just couldn't get to it.

I had imagined him resisting suggestions from me and had marshaled a few arguments in favor of p53. I didn't complicate matters by explaining which friend had found the info for me, I just said I'd been reading up. I added, "I bet that's a phrase doctors dread, 'reading up'."

He chuckled and said, "Oh, not at all. This is the Bay Area, we expect it." I told him the intratumoral p53 injections looked the most promising to me, at least for the one in my eye. I'd called USC this morning and learned that my metastatic tumors disqualify me from the big study going on there and elsewhere in the country and he said, "Oh, we're all doing it but everyone starts on their own time."

To my surprise he agreed immediately that direct p53 injections were probably my best bet for getting shrinkage now. He wasn't sure the adenovirus vector was the best one out there but it's probably accessible soonest and this big thing in my eye is aggressive. Weeks ago he dismissed injecting cytotoxic chemicals directly into the big tumor saying that its location meant I would lose the eye and could very well suffer strokes. He didn't mention strokes in relation to p53 but he did say there was some danger to the eye. I went ahead and used one of the lines I'd prepared. I told him I'd been thinking of how he had said in our first meeting that asphyxiation from a lung tumor wasn't really the worst way to go, the pain and pressure of tumors in the head would be much worse. He nodded, a rueful wince, and suggested that the p53 injections could be preceded by a quick palliative surgery just to "debulk" the thing in my eye. Susan asked about the danger of surgery accelerating the growth of metastatic tumors. He said he didn't think there was any.

Perhaps I am more blunted by the analgesics than I think or perhaps I harbor such deep desires to get this thing cut out that I forgot what I'd heard before. For whatever reason, I found myself shaking my head as if I had good reason to agree with the oncologist but Susan was right to ask that question. Some months ago the acupuncturist said that general anaesthesia was terribly immunosuppressive and when I'd asked the surgeon about it he'd said he supposed so, but only for a day or two, then your levels come back up. After the metastasis showed up in my February x-rays, further surgery was ruled out as "of no benefit" -- now that they knew that they didn't know where it all had gotten to they also knew that they couldn't get it all out. Several people asked why the surgeons couldn't just keep whittling at the tumors they did know about. The idea of leaving a tumor in place to grow bothers some people enough to make them ask that particular "why not" quite sharply. I cited the danger of seeding new ones during the surgery and said it meant taking the defenses against the others down. I referred to anaesthesia's putative immunosuppresive effects as "almost like fertilizing the remaining tumors." A good dramatic line and effective for ending that line of inquiry, but I probably overstated things a bit there. I don't know how much, but the risk seems acceptable to me now and seemed so as soon as "debulking" was offered and went right on into the discussion of appointments and potential timelines. I'm to meet with surgeons Monday, perhaps to get debulked as soon as next Wednesday, which also happens to be the anniversary of last year's maxillectomy. The decision about whether the eye has now become mere bulk has yet to be made. The p53 injections are an out-patient procedure, though it's not actually routine at Stanford yet, so they may arrange it through this clinic and then have me fly off somewhere every week or so. My schedule becomes ever more medical and less predictable. My reading on Friday is one of the few firm stakes in the ground.

It's taken me over three hours to type those few paragraphs, driven through my sleepiness by anxiety no doubt. Now I don't want to post it because the sound of the modem dialing up the server and the server answering would probably wake Susan. I feel I owe her an apology already for leaving her dangling in the conversation with the doctor. I don't want to add modem noise.

Thursday night, April 23, 1998
Messier Than We Thought

The surgeon who did the original maxillectomy and the follow-up surgeries last fall thinks any "little" surgery to my eye would be both futile and dangerous. They would be cutting into tumor, not healthy tissue, and the circulation is already bad in that area because of all the previous radiation and surgery and recent chemotherapy so healing would be a problem. He sees a significant risk of starting some continuous bleeding and getting infections that won't clear. The oncologist points out that my tumors are likely to pop through the skin fairly soon, at which point I'll face risks of bleeding and infections anyway. It also turns out that the very procedure I've asked them to try, direct injections of the p53 vector, carries some of these same risks. The whole point of the p53 study is to prove the principle that tumor cells will necrose under the directions of this compound. The problem of getting all the dead cells cleared out remains. The needle itself and a syringe-barrel full of liquid create a wound in the first place. The oncologist is still in favor of debulking the tumor and thus trying to gain a little time to try something else -- a standard compound like methotrexate, if not p53. He's asked a different surgeon, an eye specialist, to look at my eye and this other guy is willing to try "debulking" but is not enthusiastic about it. I have to decide by noon tomorrow (Friday, 4/24) whether I want the surgery next Wednesday or not. If I don't take that date I'll have to wait an undetermined long time after. It's not clear that I'd get p53 whatever I do. The oncologist is willing to set up an exam and consultation with someone with immediate access to the stuff and while I'm willing to travel for such a thing, that person, whoever it might be, would still have to be willing to set up a treatment outside of the study protocol just for me. As for a more standard chemotherapy, they've already hit me with their best shot and it failed. I'm being asked to decide to try something already thought to be less likely to succeed.

I know my mood is often different in the daylight than it is in the dark so I've decided not to decide tonight.

Friday, April 24, 1998
Deciding in the Dark

I was right that my mood changed with the sunrise. I now feel that the odds of getting through the debulking without complications are similar to the odds of having complications without the surgery and there's a fair chance for a little extra time with less pain and pressure. The important word in that last sentence is "feel," I know far too little to make an informed decision. I might change my mind if I were to hear that the films from yesterday's CT scan of my orbital area showed dramatic intrusion back toward the brain or encroachment toward a major artery. I would probably rethink things or, rather, re-feel things then.

The pace of typing this update is appallingly slow and I'll have to break off soon but before I stop I want to tell anyone planning on coming to my reading tonight to please feel free to skip it. I scheduled this so many months ago that I can't bring myself to cancel it now but I don't really know how long or how well I can read. The plan is that Maude will read first for twenty minutes and I will read second for thirty-five or forty minutes, concentrating on poems I've written in the last year. Frequent visitors to this page might guess that comic themes aren't likely to dominate the evening. I had thought about hauling out some older pieces to lighten things up but it seemed that the gaiety might feel a tad bit forced.

For people coming from out of town, here are the directions to Louden Nelson Center:

Take Hwy 17 to Santa Cruz and take Hwy 1, North towards Half Moon Bay
Hwy 1 turns into Mission Street.
The third traffic light on Mission is at Laurel Street
Turn left onto Laurel and stay on Laurel as it goes downhill
past the high school athletics field and across the railroad tracks.
Louden Nelson Center is on your left two blocks past the tracks
on a street called Center Street. It's a converted grade school.