Sunday, September 21, 2008

Rcvd. Sept 4, 2008: Good News

"Just wanted to tell you that the last CT scan showed that the metastases have shrunk!
L."

That is all.

Saturday, August 2, 2008

Eponymous

If this is ...


Hey thats no way to say...

Good-bye?

Tuesday, July 29, 2008

Tomorrow's the third round of chemo

Yesterday evening, about this time, Lila called me. She had a busy day scheduled today, including an interview with the person who will be taking her place at school in the Fall. And an appointment with one or another of the doctors in whose care she is.

Her weekend was, apparently, wonderful. She and an old buddy spent Saturday schmoozing. They go back to grad school, I think, 20 years or more. There was a pool party in her honor at the School pool on Sunday. She thought maybe there were more than a hundred people there, including her admired and beloved Doctoral advisor whom she hadn't seen in years. "He pointed me to Heidegger," she said, which said it all. (There really IS no such thing as an outside joke, I think.) The old school chum arranged the reunion.

I told her I coulda slipped into the crowd and gone un-noticed...until I kidnapped her, anyway, and spirited her away in my pick-up truck with my pit-bull companion, Budreau (pronounced "bud-roe") on the seat by the window. That mighta been noticed. But what the heck?

One of her kids, the trombone player (ST), is auditioning for a killer, once-in-a-lifetime, gig in Las Vegas. If he gets it, he'd be moving. It's the kind of gig that, if he got it, he'd probably be setting himself for life as a working musician, and a trombonist at that... He's really talented. She's enormously proud of him. I've heard recordings, and seen vids; he's good. I actually remember when he got interested in jazz trombone, about 10 years ago. Through Lila, I sent him some Kai Winding/JJ Johnson recordings.

Once again, I'm sorta stalling, hoping she'll have the chance to call tonight. Two hours earlier, there than here, and she's got chemo tomorrow, and she's been busy today, and is probably pooped, after a long, fun, but tiring weekend, and I guess my chances are at less than 30% that I'll hear from her til after her chemo, tomorrow. And I should probably be glad, ceteris paribus, that she had so much energy for me yesterday. Her appointment for the administration of the chemo's at 8:30. But she's gotta buncha prep to do. Last session, iirc, she hadda be there around 6:30. Which means getting up and moving by, what, 5?

Good night, my dear one. Bide in my love.

Saturday, July 26, 2008

Withdrawal, Part II

On another blog today, I mentioned Lila's 'withdrawal experience. After finishing one part of her treatment, and the pain having subsided somewhat, she stopped taking the high-dose/high potency opiate pain relievers (e.g., Oxy, Vicodin, the chemical codeines). Inexplicably she began to feel shitty, really shitty, tired, and completely out of sorts: listless, grouchy, weak. She attributed it at first to delayed after-effects of the recent chemo. But the symptoms refused to subside or even much diminish. Finally, in desperation, cuz she felt terrible, she took one of the pain-killers she had remaining, and was utterly amazed that she IMMEDIATELY felt better.

A blogger there replied with the following advice:
A doctor friend of mine gave me a remedy which helped considerably.
He made me a tea from the crushed bulbs of opium poppies pods, which are perfectly legal and can be found in many floral design and hobby shops, as well as from numerous sources online.
Crushed them (coffee grinder rocks), and simmered them for a half an hour (not boil), strain it thru a coffee filter and drank slowly, drinking just enough to take the edge off and refrigerated the rest.
The withdrawal effects diminished almost instantly.

Friday, July 25, 2008

Handling "It," Well or Ill

I said yesterday on the phone, and Lila seemed to agree, I guess, that I might not be 'handling this' very well: "this" being the knowledge of impending--gloriously indefinite and yet still numbingly inevitable--loss of my love, my Lila, my only love, no matter the number of intervening months, still LONG before we should have been having these conversations. "This" pains me extravagantly. We can never have again what we once had. But I want to try to make whatever we have the best it can be. I mean that, meine Froeschleschen...

It makes her uncomfortable, my raw sadness, my occasional outbursts of unconcealed/unconcealable anguish. Is that something I need to learn to conceal better? I do mostly conceal it. If I didn't, I would barely be able to draw breath, much less speak. Does she want me not to show her, not betray myself, when I am gripped with these furious emotions? Swear, I'll give it my best shot.

(Dang, here I thought these durn women LIKED it when us fellas could express our emotions.)

I need to try to learn better how give Lila what she needs. It's those kindsa questions I want to pose to Enid (that's her name), today. She's a distinguished, older woman, mid-70s, whom Lila met at my party for her back in March. She's gonna come over to talk today, "out of the office." Over coffee.

Lila, when I told her of my plans to seek advice from a counselor, said (from her lips to god's ear), she's not gone yet. My reason, my rationale, is, if I'm gonna help her, I need some help, myself. I don't have an exactly support-rich environment. My closest associates are canines. They listen, and their faces show concern. I'll letcha know how it comes out.
(...)
I have been thinking a lot about what we said last evening, just at our parting, about "handling it," and whether I'm doing it 'badly,' or if I'm 'losing it,' because sometimes I cannot control myself, and sob--or choke vainly--at an inopportune moment.

In part, I think, that some such 'trouble' as I am having "handling" this may stem from the fact that Lila and I have never had--may never have--the opportunity to actually, physically, lovingly fall, weeping, into one another's arms, to truly mourn the end of what was, to come--join--together to come to grips with what is, to love and comfort and console each other. I think we need that. At any rate, I think I do.

If we were 'licit' lovers, we would have had that conversation the day she learned her diagnosis, and we'd still be having it. But because we are so distant, so remote, so apart, we couldn't have it. So she waited til she figured I'd gone to bed, then typed it all out on the IM. She called in the morning. I said something like, "Shit, that really sucks...", while, as hers had the previous day, my world collapsed. You cannot, it seems to me, have that conversation at a distance. IM, or phone, or E-mail isn't gonna cut it. You gotta be there. We should have been in each others' arms. I hope, and I'm also sure--she's had that chance with her kids. But it seems like there's a piece between us missing, and that's my guess as to what it consists of.
(...)
Enid said three things, today, more or less.
1) The tears will end when they are gone. There is not just one cause--Lila and loss. Probably there's lots of other things they're washing away. Honor them, let them go.
2) Ask Lila, out-right, what she wants me to do, what she needs from me.
3) Make a life.

Easier said than done. That latter point, especially. Lila and I usta laugh when, after she'd regaled me with the activities of her busy day, her students, her family, she ask me what I'd been doing. "Mostly, just blogging and thinking about you, about us," I'd reply. "You have a life; I have you. 'S'all I need...Genugt mir, volkommen..."

"Body of a Woman"
By Pablo Neruda

Body of a woman, white hills, white thighs,
you look like a world, lying in surrender.
My rough peasant's body digs in you
and makes the son leap from the depth of the earth.

I was lone like a tunnel. The birds fled from me,
and night swamped me with its crushing invasion.
To survive myself I forged you like a weapon,
like an arrow in my bow, a stone in my sling.

But the hour of vengeance falls, and I love you.
Body of skin, of moss, of eager and firm milk.
Oh the goblets of the breast! Oh the eyes of absence!
Oh the roses of the pubis! Oh your voice, slow and sad!

Body of my woman, I will persist in your grace.
My thirst, my boundless desire, my shifting road!
Dark river-beds where the eternal thirst flows
and weariness follows, and the infinite ache.
(Emphasis supplied. Ed. Baby said this week, in passing, that she guessed her libido was gone. I volunteered to go look for it.)

Wednesday, July 23, 2008

One Single, Swallowed Saab

Per Day...sounds like the diet for a Swedish, hiway-bridge troll: no Volvos, and only one Saab per day...

That's my limit. One stifled sob per customer, per day, that is. Lila reproved me yesterday, mildly, when completely unexpectedly, our conversation wandered into emotionally tricky ground, when I heard the gravity of what I was saying and--in just an uncontrollable fraction of an instant--my voice started to crack with barely repressed (barely repressible) sorrow. "C'mon, Woody, baby," she said to me, "don't get all mushy on me, now. It doesn't help..." (cuz she's Deutsch, it sounded like "moooshy"; it'd rhyme with the sound of the German nickname for Ursula, "Ushi.")

Otherwise we had a cheerful, sometimes comic, basically 'trivial'--quotidian--chat, interspersed with frequent protestations of affection, care, concern, and love. She'd dispatched her son to the store again for things for dinner, and we had a care-free (ceteris paribus) chat. She regaled me with the charms of ship-watching, identifying different flags, or companies or cargoes from the beach (a pleasure I also know well, from time spent in Seattle, 25 years ago). Beachcombing, and playing with her dog at the beach. Puttering. Visiting friends. Keeping busy. She sounds better every day. I love hearing the fun in her voice.

I am trying to negotiate a "one-stifled-sob-per-day" deal now, because I cannot ever be certain that something won't be said, or won't occur to me, that will strip me of all seld-control, and tip me like a bobbing duck over that tenuous line into (unwonted) stuttering, sniffling lachrymosity. I don't want Lila to not want to call for fear of my becoming "moooshy." I am slowly learning both how to avoid the tricky territory, and how to fall on the grenades.

The "Struggling-to-find-a-working/workable-perspective--one-that- balances-all-the-competing-feelings--and-not-having-a-lot-of-luck-
figuring-it-out-all-by-my-lonesome" Method (my usual approach) is not working very well, it seems to me. And I'm in a position to know. So, tomorrow, I'm having coffee with a friend who also happens--according to mutual friends whom I asked for advice because of their connections with local 'social services' people, and who've consulted her themselves--to be a pretty gifted counselor, and I'm going to try to ask her a lot of questions. And in all probabilty, blubber (or is it saab?) like a jilted teen.

I don't think I'm crazy, or going crazy; I'm just really sad and kinda depressed, too, which I think is comprehensible and defensible. And manageable (tho I guess 'crazy' could be 'manageable,' too, with the proper drugs--but, then, tis EVER thus, nest paw? Who has the right to quantify YOUR pain?). The issue, as I see it, is that I have no previous, personal frame of reference for this situation, no comparable experiences, no scale for the emotions, no way to fix 'excess' in any kind of quantum way. Never before has my lover had cancer. It's the Olympic gymnastics of the Heart, improvised, to strange music (Wagner?). I just don't know.

That's some of things about which I'm hoping to chat with my friend, the counselor, tomorrow. It falls into that category of "not getting in the way."

One thing: It's a damn good thing I can't burn down galaxies...

In the meantime, this strikes me as suitably bizarre expression of a relevant sentiment:


The Leningrad Cowboys
Who knew?

Monday, July 21, 2008

Lila's sounding better with every passing day

I really don't know how she's feeling. She says "Okay." But I don't really know what that means. Still, the increasing animation in her voice and the return of her sense of humor is loverly. I think her pain is diminishing, but how much and where it still persists she doesn't volunteer, and I don't often ask...

For family reasons, Lila's animal mascots are frogs. She collects 'em. She was delighted today that she'd found an exceptional one, which apparently lies in three pieces on the ground, giving the impression that the rest of it is just under the soil. Froggie implicature. Who knew.

The storm, Cristobal, has passed and left them untouched, except by rain. Her place is inland of the Intercoastal Waterway a bit, I gather, and would be protected except in the case of a direct hit by a really big storm.

We have worked out a communications protocol for the rest of her stay down there this week. Each day, just before dinner, as she did today, she'll dispatch her son ("He hovers," she said) to the local market for needed supplies. An elaboration of the old "Can't Have Crabs Without Beer" gambit which succeeded so brilliantly on Saturday, when we stole close to a half-hour, too. Yes indeed. A daily errand. Works for me.

Our conversation today was relaxed, albeit afflicted with a faulty connection. Talking from skype-to-phone, there's a microsecond delay between speech and audition., which can get dicey, especially when either party or the other tends to interrupt, which we both do. We talked for what seemed a good long time, probably pretty close to half-an-hour. Lila didn't seem exhausted at the end, either, a good sign. I think I only audibly swallowed one sob...Pretty good. Getting better. Gonna have LOTS of practice.
My Girl

(I love her so)

Sunday, July 20, 2008

Wouldn't It be Nice...?

I didn't hear from Lila today. I hope she had a great day. If her spirits last night were an indication, and survived into today, she probably did. They had to contend with Tropical Storm Cristobal, which pushed water 2-4 feet above mean high-tides. I hope she and her family/domicile were above the flood. I have no way of knowing unless we talk.

Days when I have nothing to report, usually I have inserted "interludes." Today is no exception:
I can't think of any way on earth the details of this story can/could hang together. I fear it must already have been "snopesed." (I just looked, and it's TRUE.) But it is a lovely story, and everybody needs moments of implausible possibility. Thanx to Sara, first to tip me to it. I am a sucker for big cats...

Saturday, July 19, 2008

Beer Run


You can't have crab without beer.

So SG was dispatched to retrieve beer from the semi-distant convenience store, about a 20-minute round trip.

As soon as his ignition fired up, Lila called me. To say I was happy would be understate the matter by a factor of some multi-digit magnitudes. Instantly, I went on skype (my best friend, these days) and called her. They (?...Lila, SG, mebbe daughter?) went out with a crabber and retrieved a couple of pots today. Crab was in the offing for dinner. Entirely plausible. We gabbed for 20 minutes or so. She sounded wonderful: happy (almost), relaxed, comfortable. I haven't heard her sound so good in weeks. We laughed a lot.

The wind is up, there, near Cape fear, cuz there's a little storm off-shore somewhat south of her. Lila mentioned that her neighbor was heading out surfing. The waves are up. The Atlantic coast is shallow. Big waves can pile up and run out. I usta surf, in Ca and Hi; I was almost unconscious, almost instinctive about it when, due to circumstances, I left off surfing as a regular matter to go another way in 1984, and lost the touch. It would take me a month at the beach, every day, to get back into those muscles. I told her my "i-almost-drowned-one-time" trailer, on a day that became enormous, but started out tame...

Lila has a green thumb. She has an authentic attachment to, an affinity with the ground. She described to me the salt-marsh reeds waving in the wind with such exhilaration, such pleasure. And the pleasure of the dog, breasting through pursuing gulls. She sounded wonderful. She was giving me some of her good day, and I am so grateful. I needed it.

We exchanged fervent endearments, fairly frequently. Those are sometimes the hardest moments--mebbe for us both, surely for me; we haven't discussed it from the perspective of maintaining appropriate composure. And today I think I never even (audibly) sobbed until mebbe the last 10 seconds, when SG was heading into the house.

Lila is my darling...And she regards me fondly, too. Lucky me!
It's Always Better When We're Together...

Friday, July 18, 2008

"Hot Spots" Rise In Their Importance

The issue, when Lila's at the cottage--that's where she called me from last year; hah, was it only last year? fuck me running, what a year--has always been that she has to find a hot-spot, that glowing point of wireless internet access which, where she is, are scarce, evanescent and fragile as spin-drift... She explained that it made no sense to provide their place with a feature they'd have to keep active all the time, that's so rarely used, for the money. I guess with her son there she doesn't want to call on the cell. She IM'd this afternoon.

It was late, 4 pm her time, when she IM'd me. There's this little green frog flag that pops up in the lower right of my screen that alerts me that she's come on line. This flag erases every other stimulus in the universe. She'd found a hot spot, but it was weak and shifting. She hadn't slept well. Had awoken around 6 am, unable to recapture sleep. She indicated she didn't feel badly. I couldn't ask specifics because the connection kept breaking off and then reappearing. It was frustrating. She puts up with a lot to keep our deal alive, under the circumstances. It can't be easy. But I think/hope she needs to talk to me, to know I'm there, as much as I need to hear from her.

Lila said she might try again after dark. That'd be about now down there. I guess I'll wait and see if she can find a hot spot, or if she calls. I sure hope she does.

In the interim, an apt (I think) musical Interlude ("interlude," parsed etymologically, means 'play between,' more or less).
Mark Knopfler and Emmylou Harris. This is a GREAT album and this is one of a handful of GREAT songs. This is a GREAT LOVE SONG. But it's just the song, no vid. ("Just" the song? Do you hear me?) Still, waddaya want fer nuttin? I love this song. I only drove trucks a short while...but I was a carpenter.

That minor-key melancholy gets me every time.
This song is by an old friend of mine and it sings my home-town. I got to take her there.
I didn't take the fotos. They're not bad. They have a sense of humor.
I had a very good time in Santa Fe, back in the day (I was known by my order at the Senate Lounge after my radio show, at midnight, in 1963--age 17. USAF, 64-68, I moved on in '78)...Eliza Gilkyson has really REALLY grown

She ALWAYS knew how to sell a song. The first band I remember her in was called "Family Lotus."

I'm just stalling; Lila's not calling.

G'nite, baby. I love you...

Thursday, July 17, 2008

It's A "Good News/Bad News" Kinda Thing

The good news appears to be that it might--even may--NOT have been the after-effects of the chemo that has laid Lila so low this last week. Or at least not that, alone.

Her lassitude, discomfort, grogginess, etc, might have been caused by...

...wait for it...

WITHDRAWAL...

My good gal, when her neck stopped hurting, last week, mainly after the last course of radiation's effects had diminished, and when she learned how not to cause herself pain in her movements, had stopped taking the really strong opiates which had been prescribed for her for the really severe pain she'd been having. She had been taking Oxy and more, twice a day for a couple of weeks. The plethora of complaints which had so limited her, and depressed her so, and had kept her inert if not asleep for most of those recent days --including a sort of low-level, near-nausea--began when she had quit the opiates and (suuuu-prise) were relieved to a significant extent when last night, she took one, just to see what would happen. Her mood, she said, elevated immediately. This might be a significant issue, but with S-4, mebbe not so much. I desperately hope she stays with us long enough that we gotta worry about detox...

Yes, she called me this morning, just before she and her second son (SG, the guitar player) left to spend some time at the family cottage near the coast. We'll stay in-touch. She'll have her cell-fone, we have a calling card, and she says she'll take her skype head set, too. She said she'd call me when she got settled later today. It's abut 250 miles from where she lives, not all of it freeway. Five, mebbe six hours in he car could be hard for her.

She hadn't had the energy--prob'ly she hadn't really felt like it--to read the blog. So I asked her about the cell-fone, and whether she'd had any fall-out from my call on Sunday. Thankfully, no questions ensued. But it was too close a call. She couldn't refuse to cease contact with me if he insisted, and threatened to kick her out, if she refused. She's too vulnerable. That kind of forced, radical separation from her kids would kill her. So we're not gonna take any more silly chances: we're (i'm--she can call me at any hour of the day or night without potential embarrassment to anyone) gonna suspend the late-night love-shots, at least after she gets back from the cottage, which won't be til next Friday, or so, ceteris paribus. She said she finds 'em good for her morale. Mebbe i can figger out how to send voice IMs...

I also broached the other issue, the Sunday Silence. I assured her I didn't need a full-fledged conversation, just a word, a sign, anything, that she was doing okay. Lila, I believe, saw the justice of my complaint, and agreed to try. That's all I can ask. I do NOT want her to regard me as part of her burden (although she well could not be blamed for doing so to some extent, I guess). I reckon in her position, I might...

I really, really hope her rest & recuperation near the sea-coast does her good. (I know it would me.) When she's down there, and has time and some privacy, I'm gonna get her to talk me through sending her audio files via IM, or some other medium. i just got a 10-cd box set (60 recordings) of early Miles i KNOW she'll love...

Addendum: Lila said she'd call me when she got to the cottage, and she just did. About 6 hours. She sounded pretty good. She said: "Before SG pops up, I want to tell you how much I love you." All's I can say is "Thank you, baby." God, I love that woman so...

Tuesday, July 15, 2008

After The Brief Hiatus, We Resume

Sunday was just too traumatic. I couldn't write. Hell, I couldn't even think. I was worried past distraction.

And yesterday I had my court appearance for 'Disorderly Conduct,' resulting from an incident last month at the local Ball-park, where I was arrested for saying "fuck" too enthusiastically (well, also for calling the cop a moron, as in "You moron, I was NOT doing anything wrong!"). Upshot: $50 fine, 90 days unsupervised probation (and a sotto voce admonition from the legal aide atty sitting near by that cops don't like to be reminded they're morons. You call 'em 'pigs,' they just smile their little, piggy smiles; call 'em morons, and it's like you're in on the secret. But I digress.)

On Saturday, Lila was in bad shape, desperately weak and weary. They've even got a neologism: chemo-weary. The way I hear it, chemo can do that, and does so, pretty regularly (to say nothing of pretty much constant distress to the bone marrow/blood cells, the cells of hair follicles, the cells lining the digestive tract and the cells lining the reproductive tract. Stuff mess you UP!). She felt pretty good on Friday, but by Saturday, about 72 hours after Lila's latest chemo, she was so tired and debilitated with other symptomatic discomfort that she couldn't brush her teeth.

She IM'd me in the morning, said the weariness and weakness was terrible, the meds weren't helping, and she was gonna spend the day on the couch. That was the last I heard, that day. What I knew was that she was hurting, badly, and incommunicado, for all practical purposes.

I was not expecting to hear from Lila on Sunday. Back BC (Before Cancer), we had established a protocol about communicating: she reserved Sunday for her family. This was in the day when we'd talk for HOURS and HOURS, sexy and funny, and smart talk all intermingled. We talked 6 hours on the phone one Saturday night, from about 10 pm her time, til almost 4 am. A single conversation of ours could consume a whole day. So she thought it fair to her kids to give them Sundays. And that made sense. Then.

But under this new, cancerous regime, I am having some doubts.

The problem was/is what happened Sunday. Since the last thing I knew on Saturday was that my babe was terribly weak--for which she required hospitalization and observation after the last chemo--and it was now Sunday, and I probably wouldn't hear from her, either, I tried to open the communication channel, just to find out how she was doing. I kept up a steady stream of IMs. Sometimes she leaves the IM window open, and might shoot me a nod. But not Sunday.

So, I called her message machine at work. After the last incident, we'd agreed that if she suffered any reversals, or had to be hospitalized, she'd leave me a private message, in German, on her old phone at work. So I called the machine, and heard just the usual, curt announcement. I left a message anyway, in case she checked in. And then I waited. And waited. And worried. Because she had seemed in such bad shape on Saturday, I was more than usually worried.

So after a decent interval, I tried to call her on her cell. Lila often--usually--doesn't answer her cell, rather I think preferring to let it take messages. I have been in the habit of calling her to leave encouraging, supportive, passionate, loving messages that she would retrieve at her leisure. But the message didn't open before the phone was answered.

Not by my Lila, but instead by her husband. So I went into my Mark Schreier personality, a former colleague and friend who'd heard she was ill and was trying to call only to discover the extent of her illness. Gave the fella my phone #, as anyone would who was perfectly innocent. (Mark Schreier was a name we agreed upon years ago. It's a pun on the German Markt Schreier, or pitch-man. She thought it funny, our little inside joke, as I do have a bit of the "barker" in me (woof). We have a lot of pet names.)

But inwardly I was going crazy. Why was he answering her phone? In my mind, there was only one reason: she had had a reversal, a crisis of some kind, and it was serious. Mebbe she'd died? Why ELSE would he answer her phone? She's stage 4. She could slip away anytime, really, treatment or no. That's what it means to have no illusions, isn't it?.

But I couldn't betray my anxiety. I had to be a worried friend, not a frantic lover. I think I succeeded at that, though I don't know. I had NOT called the family 'home fone,' precisely to avoid what had just happened on the cell. When I hung up, I went directly to the obit page of her local paper and was knee-bucklingly grateful not to have found her name there. I still think we're gonna meet again, in this world (cuz I'm no believer in any subsequent ones).

So at least, I guessed, she was still among the living, because were she not, I think they would have said so right then... But in what condition? Okay, she's not "gone," but she still could be desperately, grievously, mortally ill (well, yes, I know she is, but there's a difference...). I started calling hospitals, though to no avail. And then I started calling friends, to vent my anxiety, tears and vexation. I have some good friends like that, many at a distance: Suzz, Tena, Sue, Mena (funny, they're all women, innit?) Good friends.

And I got drunk (mebbe a pint-and-a-half of scotch?), enough to go to sleep, finally.

Then Monday, I had to be downtown in a courtroom at 8:30 am, and so missed her call when it came around 8 am. She left a message, in which she didn't sound much stronger. But it was Monday, and my darling called me. I got the message when I got back from court, and called her back. But she couldn't talk. She'd only called to reassure me she was still alive. We exchanged mebbe 30 words...Then she called this morning, sounding a little better, but still weak, and she said she has a pretty staggering array of serious discomfort. I was and am always so grateful to hear her voice, I just about wept into the fone.

There is another thing I am now beginning to fear, and that is that my obsession on Lila's disease/condition has become all-consuming to me, and just about the only thing about which I think; and I fear my friends (such as they are, and they aren't that numerous) soon will grow exhausted from hearing me carry on about her and the situation and it's hellishness, and will simply stop coming around. Luckily, I guess, I supply some valued substances to some of 'em, so they'll prob'ly steel themselves, suck it up for the sake of the bidness.

So that was where it was. I had just about wept myself dry on Sunday, worrying. (I know, mainly we weep for ourselves. I'm guilty--takes a whole lotta medicine for me to pretend I'm somebody else.) Any potential recrudescence of 'optimism' was vanquished like Custer's 7th. Yesterday was for recovery. And today we resume the Chinchilla Chronicles...

Saturday, July 12, 2008

An Antic Interlude

"Dying's easy. Comedy is hard." --Sir Donald Wolfit's Last Words...

which segues nicely into:

We hardly exchanged even bare syllables today. Not viva voce, but on the IM; this was the textual equivalent of grunts. Lila's pain is bad. The bad day after chemo seems to recede one each time. After the first one, she was hospitalized a day after. This time, the pain and discomfort didn't really start until last night and this morning, I guess. I'm always hesitant to call until she invites me to. This sucks.

Friday, July 11, 2008

"BE CAREFUL," I told my Lila yesterday evening when she called

"You're gonna turn me into an optimist..."

Baby called me kinda late yesterday, and though our conversation was not really long, it was full. I needed time to process it, so I didn't write last night.

We were talking about life and stuff: her treatments, her 'future' (to the extent that that is a knowable subject), our future (under the same constraints). She had been in to the clinic for her immuno-booster (the "Hulk" shot), and had returned home with a couple of girl-friends. She'd played hostess, which I'm guessing she enjoyed. She called me after they left. She sounded pretty energized. The shot hadn't been bad, and the after-effects weren't noticeable, yet.

She told me more about her conversation with her oncologist. The doc warned against placing too much hope in announcements such as those which attended the LIFT mouse experiments (the ones locally, in her area). He said it is 'rare' that results from clinical studies with mice are even remotely as effective when transferred to humans. (Of course, the mouse results were 100% effective, so there some margin for error, to me. But even if the results transferred to humans was reduced, I do bel;eive we'd BOTH settle for 10 percent, if hers was one of the 10%). He warned against trying out a lot of "naturopathic remedies," ingredients in which can possibly counter-act what the chemo and the rest of the pharmacological drugs are designed to do. I guess that's plausible, til further notice.

He said that if she had come to the clinic two years ago with the same symptoms as she now presents, in the same stage of advance, they would have told her, as gently as possible, to go home, sign a living will, and enroll in hospice. In just two years, the treatments for this (extremely rare) cancer have developed to such a degree that it "may" be possible to talk of "managing" it not long off, with the application of biotic, genetic and chemical agents in development and coming on line all the time. This is probably "optimism," and I'm embarrassed (not really, cuz when it's the life of your love on the line, you're not 'hoping,' you're insisting!).

The program she's on right now has but one telos: extending life. Her original diagnosis/prognosis was pretty grim. Untreated, mortality was "almost certain" within about 6 months. "By Xmas," she/he/they said. The oncologist's demeanor and discourse suggests he's looking further out than that, and he has now laid out a schedule for continued chemo treatments, after this first round concludes in three weeks, with a hiatus immediately afterwards, and a space of time to conduct the necessary tests and scans. Resuming in September, probably.

How I figure it, then, is, "make it through December." After Xmas, we're playing with the house's money. If you can, you ALWAYS want to play with the House's money. It's the ONLY way to win.

Lila went by the local Cancer Society office on Wednesday, too, and says she was less than enthused about the selection of wigs available through the local Cancer society. She said they were all pretty dated, being mostly hand-offs from folks who, for whatever reasons, no longer needed them, and often not being very good quality to begin with. So the "Lila's Locks" program might be viable again. We'll see. In a culture such as this one, where such an illogical and impossible premium is placed on cosmetic 'beauty,' when a woman is undergoing cancer treatment--which often as not attacks the very substance of what it means to BE a woman--and when the treatment itself robs her of the last of her 'assets,' that has got to be an unhealthy environment in which to try to make oneself well or even better...People only think such concerns are trivial who either have never faced them, or are in denial about it.

My baby called me today, already, too, around noon...Her son the guitar player (she has a son also who plays trombone) is over at the house today doing stuff that needed doing. Her roses were falling off the trellises, and Son G (vs Son T) was outside restoring the vines to their supports. They've had a lot of rain. (We had a nice long soaker here in the early AM, about an hour, around 330. I awoke trying to remember if I'd covered the MG. I had. Before going back to bed, I called Lila's cell-fone and left her "the (almost every) nightly love-drop," a message usually of 20-30 seconds, full of endearments and wishes that her coming day be pain-free. Also, if I've sent her anything interesting, i'll pass a heads-up; and close with clouds of love.)

She sent me a video of the concert we tried to watch on 7/4, of Son G's James Brown cover band, where the audio was so bad. This vid is much cleaner, and the band sounded very tight. They need some animation on the stage, they've gotta develop some 'steppin' stuff, but musically they're purty hot already...their vocalist is going to have to "work" harder, though, to emulate the "hardest-working man in show-bidness." He needs to "SWEAT"...He's got a good voice, but needs to work on the 'presence'...They're already booking gigs for the fall, as far off as Charleston, SC. They'd be a GREAT "Animal House" frat party band...

Last evening, my Lila seemed pretty bouncy, perky. We talked animatedly, and laughed, and touched difficult topics too. Then she had an in-coming call, and then another. We rang off, she saying she'd call me back. An hour, then another, passed. Then she called. She said one of the things she hadn't reckoned on was the amount of well-wishing, expressions of concern, and out-pourings of real affection, to which she would have to reply. She has a wide circle of professional acquaintances, she is known and admired in several professional academic curricula. She taught almost 20 years in the same place.

I told her she should put an ad on craig's list for an amanuensis, and hire me when I applied. I'd certainly out-qualify any potential competition, and I'd work cheap. Nobody'd ever suspect a thing, and I could be there running interference for her, and answering the inquiries about her health, and progress. I mean, it's got to weigh on her to constantly be repeating the same semi-grim agenda. I could 'spin' it, plus fix the plumbing at need... After we finished laughing about it, I said I worried there's no one there doing that for her. She said she knew a plumber. I said that wasn't what I meant. She said she knew that. I said ...Great minds...

Another thing, yesterday, we just about decided/concluded that if we were gonna meet again anytime even remotely soon (YES! we are), it was gonna hafta be I who did the rolling. With her relatively frequent medical appointments, etc., it would be foolhardy for her to come to NM, even if, with a compromised immune system, she didn't have to fly in an airplane full of recycled human air-borne toxicities. I don't even like to think about it, and my immune system's still in pretty good shape (okay, you could probably dribble my liver, but that aside) for some old, over-the-hill, 'dirty-fuukin-hippie.' I think whatsoever the final decision, it's probably gonna involve me, and a dog, on a road-trip.

So now there is a new game afoot: Trysting the night away...Finding time and place reassert and rebuild and recover something of OURS from the outrageous slings and arrows flung our way these last--and future--several months.

Lila didn't sleep well last night. She attributes it to the steroids that are administered along with the chemo drugs. After we'd been talking, I could tell she was getting drowsy. So we rang off, she for a nap, me for the further consideration of life, the universe, and every-bleeding-fing!

Where I've been ever since.

And it's still an hour to 'beer-o'clock,' damn it...

Wednesday, July 9, 2008

A Long Day

Chemo. I guess it takes some hours to suffuse the blood stream with these 'stoffs', auf Deutsch gesagt.

It was late afternoon there when she got home. We didn't talk, we typed, on the IM. If that's all she's got, she's giving it to me; what kinda bum isn't grateful if only for that little bit?

I never learned at what time her treatment began today, but she had an appointment with the oncologist prior, during which she asked him if he'd seen the study on Avastin, details of which I'd sent her... His answer didn't actually reveal if he'd heard of the study, because he asked her what cancers were the subject of the study (it was breast). He seemed to discount the information somewhat, based on the kind of cancer/tumor was the subject of the therapy. He told her in his experience, it was useful in short-run life maintenance, in cases like hers. Without treatment, her prognosis is/was 6 months to a year, more or less (and unofficially; i interpellated information from different places; Lila more or less confirmed it). Now, with treatments, we have to wait and see, evaluate the consequences of this round of therapies. They won't even probably begin conducting scans for at least a couple more weeks. But the oncologist said he planned to continue her using Avastin, as long as there were no adverse effects. Lesson (if one's wanted): We're working in the short run here, to some unfortunate extent.
Me? I take it as given that we're gonna get to the middle distance.

They used the new-fangled, sub-cutaneous port device for the first time today and it worked well, Lila says. She'd had a long day. Auf Deutsch, you type "Kuss"! for one, "Kusse" with an umlaut, for several/many.

Tuesday, July 8, 2008

Avastin, Ye Swabs!!!

It was close to noon her time when Lila called me today, saying she'd just awoken, after not sleeping well over-night, or really over the last two nights. As we rang off, I said something about a sort of sociological side-effect of the amazingly expensive nature of the treatments, and she wanted me to remind her of it next time we talk. I had thought that might yet be today again, but now likely not. Tomorrow, then.

Lila had a busy day ahead, she said as she put her wig-hat on her head, and adjusted her high-heel sneekers to cover some ground. Culminating event of the day was/is a check-up by the surgeon who put that spiffy, tricksy docking-port in her chest, in preparation for the second round of chemo, tomorrow. There's all kinds of little tools that come along with the port-thingy. Everybody's gotta be careful with it, cuz 1) it's a pretty new deal and not all medical/surgical/theraputic personnel are familiar with 'em yet, and 2) because the thing, un- or ill-attended, is potentially a Disneyland ride for opportunistic infections. It's a small world, after all...

Before the valve-check, she was going to go into school to meet with her ex-boss, and interview some candidates to take over her classes for the next year, while they conduct a national search. I think she was very flattered to be invited. She's a wizard-good teacher. We usta talk pedagogy for hours...

Then she was going to go personally investigate the availability and quality of the wigs made available to less-well-off cancer treatment patients locally through the Cancer Society. I await her report on this.

The report today is briefer than normal, but our chat was brief, too. There has been a development in the clinical pharmacology of one of the chemo drugs that Lila's being given--actually, to be literal, she is being given some, but is taking this one, after having had to sign a release. The drug is Avastin. (Sounds like a line in a pirate movie: Avastin, ye scurvy tumors!!!)

In a story in the Sunday NYTimes reported there were rising doubts about the utility of the drug in its prescribed modalities, since it didn't seem to contribute much to prolonging life, which is what they're ALWAYS doing. The thing about it is, that Avastin mostly gets used in what are called "rare" --or sometimes "orphan"-- diseases for which there aren't a whole lot of other 'treatment options.' Another thing is, the stuff is KING-HELL expensive, enough for a year's normal treatment would set a patient close to $100K.

Now here's what else is kind of interesting. The company that makes the drug, Genentech, is lobbying the FDA to get Avastin approved for a lot longer list of diagnoses than the several for which it is now approved, but in which its efficacy is in fact in doubt. This is the season during which the out-going President turns loose the elves in their Departments to shower largesse/lagniappe upon their loyal supporters in the regulation community. So it will be interesting to see in which direction Avastin's ship sails.

Monday, July 7, 2008

Lila 's Older Son Thinks She Should Carry A Sharpie

And offer all her friends the chance to sign her hairless head, like they would a cast...

We howled at the idea, she again, with evident relish, I the first time, on the ragged edge--if only for a moment--of hysteria. Today's her first 'day off' from therapy since June 16, excepting weekends. She sounded rested. She said yesterday had been 'emotional.' There's an irrevocability to the loss of your hair, I think. Folks will tell you that your hair will grow back pretty much within a year of the end of treatments. Aye, and there's the rub.

She has another chemo treatment on Wednesday, prior to which 'they' have to inspect the proper operation and healing around that super-spiffy, very elegant, multi-purpose port-and-catheter arrangement they installed in her chest last week. This is the second course of chemo this treatment round. There's another in another three weeks. What goes on in the interim, I don't know. Or what should follow? Haven't got a clue, myself. I'm open to ideas and suggestions.

Lila's cautiously enthusiastic about the granulocyte treatments being tested at a Center pretty near her. The fact of locality is a big issue, a lot of times. There was a story in the local news here in Albuquerque about a woman from Alamagordo, about 200 miles south of here, who was no longer able to drive home on weekends to be with her family between week-long cancer treatment regimens at one of the big cancer centers here in Abq. She spent her weeks in a cheap motel. The price of gas to make the 400-mile round trip in her husband's pick-up was more than the family budget could bear. So, if Lila's an acceptable candidate for these next trials--and maybe there's a graspable straw there--she'd be spared those sorts of hardships, which MUST impede the capacity for folks with such maladies to concentrate on their own well-being. She's going to take the data to her oncologist on Wednesday and ask him for advice/guidance/assistance (choose any number).

I am NOT above grasping at straws, believe me, and neither is my Lila...In fact, the more the better. Cuz the more there are, the more buoyant the eventual bundle. Has anyone tested/tasted Essiac, for instance? Natural ingredients and remedies are not inferior to the laboratory-derived ones. I mean, why not? Her diet is pretty restricted as it is. I'm not talking naturopathy, here, but the free-range pharmacopoeia. Other ideas? Experiences?

Lila's Locks: Lila is investigating the local access system for less well-off women to acquire wigs and other self-esteem-maintaining accoutrement through the local National Cancer Society. She reiterated today her concern that women undergoing these humiliations of the body for the sake of their very lives should not have to endure humiliations of the spirit for the sake of the prevailing aesthetic. (Well, that's how I'd put it.) So tomorrow, another day off--except for the check on the soundness of the 'port'--she says she's gonna go to the local Cancer Society and check into how they provide for these needs. Then, depending on what she learns, we may turn our attentions to establishing a little foundation locally for wig up-grades, etc. I'll keep the blog posted on the progress.

We've also been considering publishing a pamphlet, in cooperation with the cosmetician/scarf-lady, pulling together all the tips she passed on to Lila quite by accident a couple of weeks ago. The scarf-lady's (i'll call her) clientele is probably a majority women with cancer, and she has been paying attention to their stories. This pool of advice and reflection is a community resource, the kind of local knowledge that's self-legitimating for the participants. It makes 'em experts in their own life-worlds, which is the essence of empowerment. Nobody 'empowers' anybody else. Empowerment arises spontaneously from self-knowledge, self-awareness, and self-esteem. That's why the oligarchs hate it so, and strive to deprive students, for example, of opportunities to experience their own creative agency.

Sunday, July 6, 2008

A Poetic Interlude: Pablo Neruda

If You Forget Me

I want you to know
one thing.

You know how this is:
if I look
at the crystal moon, at the red branch
of the slow autumn at my window,
if I touch
near the fire
the impalpable ash
or the wrinkled body of the log,
everything carries me to you,
as if everything that exists,
aromas, light, metals,
were little boats
that sail
toward those isles of yours that wait for me.

Well, now,
if little by little you stop loving me
I shall stop loving you little by little.

If suddenly
you forget me
do not look for me,
for I shall already have forgotten you.

If you think it long and mad,
the wind of banners
that passes through my life,
and you decide
to leave me at the shore
of the heart where I have roots,
remember
that on that day,
at that hour,
I shall lift my arms
and my roots will set off
to seek another land.

But
if each day,
each hour,
you feel that you are destined for me
with implacable sweetness,
if each day a flower
climbs up to your lips to seek me,
ah my love, ah my own,
in me all that fire is repeated,
in me nothing is extinguished or forgotten,
my love feeds on your love, beloved,
and as long as you live it will be in your arms
without leaving mine.

Saturday, July 5, 2008

Lila, Lola, & Kayla Were ALL "Shedding" Today

My baby told me she just about plugged the shower drain with hair this morning. (Lola and Kayla are family dogs which shed even though they are NOT undergoing radiation therapy.) So Lila betook herself this morning on a trip to the "cancer cosmetician." This is the local--presumably herself a cancer veteran--shop-owner who ran the scarf-tying exhibition and through whom she had ordered her wig, and where she got a short (gi-short) buzz-cut. Not skin-close, but very short. She has been a well-spring of interesting and probably health-preserving information. Probably, we'll document this information at some point.

Lila's insurance didn't cover a wig, but she luckily had resources enough to afford a really nice one. It was close to $400. (You can always tell a cheap wig. Really.) Lila remarked that she'd be quite desperate, were she only 25, and going through breast cancer treatment, more or less losing everything socially valued and through which she was irreversibly attached to gender roles and expectations embedded in culture. It's Lila's ability to conceive that kind of compassion from inside her own experience that makes me both admire and adore her. We talked about setting up a little local 'foundation' to provide the kinds of cosmetic supports that would help enhance self-images of women with fewer means undergoing these debilitating and humiliating procedures associated with staying alive. I said I'd make an initiatory contribution in her name. "Lila's Locks"?

Marvelously, we laughed, loudly and often. She sounded so much better, so much less in pain. There is an astonishing--but hardly surprising--array of products for women (mostly, one supposes) undergoing cancer treatment. Some of which elicited bouts of merriment. As when she mentioned "halos," fringes of replacement hair worn on the head under a hat or a scarf. She said the halos reminded her of my sparsely covered dome., over which I ALWAYS wear a hat of some kind. I laughed harder at that than I had in at anything in it seemed like forever. I told her that, the next time I saw her, I'd be buzz-cut---down to my beard--in solidarity...I have no idea when that may be. But I could do it myself, though I haven't had a barbershop haircut since before I left Norman, OK, in 2000.

Lila said she acquired a set of bangs for herself too, to wear under a scarf. I have some lovely old silk scarves in a closet somewhere, which I'll send her. There are also caps, to the lower edges of which are sewn/attached semi hair-pieces. Mebbe bangs on the front, pony-tail off the back of a baseball cap, that sort of thing, I guess...

I asked her about why she resisted doing trials. She said, brutally frankly, that in her position she didn't want NOT to be experimental subject, and because the studies are double-blind, she'd just never know. Stage Four, folks. She said if she were in an earlier stage, she'd do it. She feels, and I wholly and totally agree, she doesn't need to be a "control." There's an element of time, or the lack of it.

We're (if I may use the collective here) cautiously interested in the near-by research into granulocytes. We're gonna find out, if we can, how far advanced the research protocols are. I figured out today that somehow we gotta keep Lila going for three years, cuz who knows what the researchers will turn up in three years. She thought that was a good idea, too, and agreed to help.

For which I cannot thank her enough.

Friday, July 4, 2008

Clinical Trial Information

The Cancer Information Service at the National Institutes of Health, Bethesda, Md., offers information about clinical trials that are looking for volunteers. The Service offers a toll-free number at 1-800-422-6237. Here's a link which lists the ACC clinical trials currently under way. ACC is classified as a "rare" disease, afflicting fewer than 200-300 people yearly. I always knew my baby was one in a million. It took me 30 years to meet her, and I was looking...

Addendum: After I'd posted this, Lila called to pass on link to a public music tent/festival where she lives, in which her son the guitarist was performing in a newly-formed James Brown cover band. We chatted for a while about this and that. I mentioned clinical trials, cuz I had found the NIH link to on-going trials which are seeking participants. She said she was of very mixed mind about participating in trials. She said she was uncomfortable with the ways some of them are conducted. They're double-blind, I suppose. But she said they don't use 'purely placebo' materials like sugar pills.

I didn't have the chance to pursue it, because she wanted to watch her son's band playing. The audio was atrocious, and the video was broken and choppy. It sounded like the mic recording for the vid was placed directly in the big cone of the bass-player's speaker, and very little of the rest of the band got through the incessant mo-town bass line...We kinda live-blogged it on the IM, back and forth. We bore it for a couple of numbers, but couldn't endure the whole set. Then she went to take a "power nap." She said she'd call me later.(Here endeth this addendum...) Addendum addendum: She DID call back, and we talked for almost a half an hour before her energy drained....

Aside: Researchers have determined that a cannabis derivative, cannabidiol, may be an effective treatment for "aggressive" cancers.
Probably, if it works like most pot products, a couple of tokes and it just mellows that tumor right the fuck out...Like: "...'ear, dude...chill..."

Thursday, July 3, 2008

A Long, Tough Day For My Baby

Lila had to present herself at the hospital this morning at 5:30 to be checked in and checked over for the procedure placing a catheter in one of the veins leading to her heart through which they docs can administer the chemo drugs, plus the other stuff she'll need to take IV during the rest of the treatments. It's this thingy: a sub-dermal port attached to a catheter.

They finished installing it, but without enough time for her to completely recover from the anaestesia before she was due to get her (last) radiation treatment of this cycle. (Addendum, July 4) She said they more or less 'forced' her out from under so they could trundle her over to get her radiation on schedule. She said she felt the after-effects of that the rest of the day, and it was that, I'm guessing, that made her sound so weak on the phone.

Apparently there is more radiation in the offing. As she told me her radiologist told her, tests won't confirm or deny anything for a matter of a month or more. This course did not address the symptoms/diagnosis for the bone metastasis in her neck. (End Add., 7/4) She has an appointment with her Oncologist on Wednesday, and her next chemo on Friday next. I've asked her to look at some of the things that I've turned up, and ask her Docs about 'em. Especially the treatment focusing on the white blood cells, the granulocytes, which is being tested locally already.

We talked only for a few minutes, five or six, mebbe 10 at the most. She sounded tired and week as a kitten. She says she's found a way to fall asleep, and I think I understand how it works, but I doubt I can explain it. But that is GREAT news. She needs to sleep to gain her strength. Being unable to sleep weakens her, which is not a good thing...

So things will be uneventful until Wednesday, at least. I will this weekend start to draft a letter to the Oncology researcher named in the CTv piece on granulocytes, who's in Lila's general vicinity, familiarizing him with her situation, and asking him to please consider my babe for any future trials he may have set for the procedure. It looks to me from some vid I've seen, this therapy might be effective against active, metastasized cancers.

I mentioned to her today that I wished she had an advocate there for her, a third person who was always on the cases of the treatment folks to think hard about her. House (et al--Lila likes "House") notwithstanding, it seems likely to me that folks doing this treatment stuff on a daily basis must fall victim to a kind of routinization, to start to view each case through a sort of 'normalizing'--and 'objectifying'--lens. When you got death on the doorstep everyday, eventually, one suspects, the novelty wears off. Clinical folks get accustomed to doing things, mebbe in just one way, and grow brittle or atrophied in their constancy. Mebbe they grow a little complacent. They may lose that sense of immediacy. I told her I thought she needed the kind of a guy on her team there who wouldn't let anybody get complacent: somebody who wasn't afraid to make noise, like, say, to get arrested at a baseball game for saying "fuck" or calling a cop a moron...Hmmmm (dramatically strokes long beard as if pondering deeply) I wonder who....

Oh, yeah, that'd be me...funny thing...heh

Wednesday, July 2, 2008

Quacks?

Through the years, there's been a fair amount of quackery around the issue of cancer treatment. Cancer is big business, where death-defying hope floats on floods of desperation-drenched dollars. The smell of blood brings out the jackals. So it should not come as a surprise that there are hypes and shills and tricksters out to appropriate, any way they can, some share of the millions of dollars spent to forestall the fate the disease foretells. Remember Laetrile?

However, there are some therapies that are still in preliminary, even pre-trial, stages, which seem --despite seemingly unbelievable claims-- to hold real promise. I have links under "My Enemy's Enemies" to discussions of three extremely promising treatment regimes: the (so-called) Kanzius treatment, described on 60 Minutes in April, which uses radio-frequencies to heat nano-particles of gold attached to cancer cells to kill the cells; granulocytes, upon which some work is at present underway at a center near where Lila lives, and a drug called Trovax, which already has had some trial success. I have mentioned all these to her. But I do not know if she has mentioned them to her doctors, and I wish I did know.

This poses a dilemma for me; well, a couple of them. I have done some inquiries, and have uncovered these several off-beat, but apparently legitimate, treatments, and if they are known to her physicians, I'd like to know why she isn't a candidate for them. I am under no illusions about the seriousness of her condition. Stage Four. Extend life and provide comfort. Still, if there's a chance, why not?


Cui Bono? It is not hard to understand why folks flock to quacks, especially if the (cancer) establishment is hostile to developments which, if they did work, could arguably reduce the hefty annual incomes the cancer profession docs command for their arcane services... Prison guards don't want pot decriminalized, either. In another context, but just as truly, it has been remarked how difficult it is for a man to see, much less decry, the lie on which his job--his livelihood--depends. Mencken? Sinclair Lewis? Yeah, I guess I have a bit of an attitude...So?

There is another dimension of the dilemma, which is that proffering suggestions of this sort might be taken as a sort of patronizing or condescension, the implication being that MY reseach has turned up things YOU couldn't--or didn't--find without my help. Or that I was trying to take over. Lila has not accused me of any such thing, but I can see how someone might.

We didn't speak today. Lila sent an e-mail, mid-afternoon, saying she felt too shitty to talk or write. Worse than yesterday. She huddled with the oncologist or the radiologist today, trying to get at the sources of the crippling pains she undergoes virtually all the time.

Lila gets the vent procedure tomorrow, presumably after her (last?--for this course) radiation treatment. I don't think they'd keep her in hospital o'nite unless there were a complication. I left her a message on her cell, asking her to make sure she had her cell-fone when she was admitted.

Then there's the holiday. Due to conditions beyond her/my/our control, I may not actually hear her voice again til next week, sometime.

Nothing I've ever done or known has prepared me for this.

Tuesday, July 1, 2008

Today Was Difficult

Lila complained to me yesterday that her neck, severe pains in which stimulated her firsts intense visits to the doctors who eventually diagnosed her cancer, did not seem to hurt less, if anything hurt more, was somewhat more uncomfortable, perhaps than hitherto.

She first developed the severe pains in her neck after trying to pull a sapling tree from the dirt. She's a gardener, loves to dig in the dirt. Pulling the thing was apparently something she thought she could do. And she did it. A strong gal, muscular, wiry, and waay WAY womanly. But when she pulled, something popped in her neck, and she's never been right since then.

That was late March, early April. We had already planned our next meeting, when school was over, in May...She spent a month trying to tell somebody something was wrong. Then there were tests, tests and more tests. We got the diagnosis in early June. Almost exactly a month ago. Which was also--ironically; I see irony in it, anyway--almost exactly a year since we had reconnected, again, after a seven-year separation. We split up--she ran me off--so she could take care of her kids. Then she took care of her kids. When they were grown and good, she came looking for me again. I wasn't that hard to find, cuz I'd been cherishing the quiet hope that somehow we might someday reconnect. Funny how this shit works out, innit?

So anyhow, I don't know anymore about how my Lila's doing today than that she's in a LOT of pain. She had her pre-op for installing the "central vent/port" today after her radiation treatment. She said it took forever, and most of it was waiting, and her head and her neck hurt horribly. And when she got home, hurting like that, she called me to tell me she wasn't gonna be able to call me cuz she felt too shitty, but that she loves me.

Not longer than a minute, all told, including the flood of endearments. Now she's resting, sleeping I hope. The pain in her voice commanded her so harshly, it hurt me to listen, though I would have, if she'd had the strength; anything if it it'd help.

(To Be Contd)

Monday, June 30, 2008

I Have A Feeling That We Are Approaching A Cusp

My Lila was tired when she got back from her therapy today. She went into school before her appointment. She called me right away when she got back. Her energy lasted about 20 minutes--well, nope, just over 17 minutes. She said the pains in her neck, which had kept her awake and were the proximate causes of the investigations that led to the discovery of her cancer, did not seem to be diminishing. This is the last week of the scheduled radiation. Lila has only three more scheduled radiation treatments especially for the lymph nodes in her neck. I don't know, and I don't know how or who to ask: "Na, und?" What's next?

She has two more chemo treatments, and on the 3rd of July, they're installing the "central port" ("central vent"?) to facilitate the application of the chemo drugs and other things in the next phases of her treatment.

I wish I could talk to an onco-doctor...

Sunday, June 29, 2008

Germany Lost, 0-1

Lila is a partisan of Deutsches Fuusball...what we call 'soccer.' The German team, which had seemed to have played only barely well enough at any time to advance in the EURO-Cup tournament, were defeated today, 1-nil, on an early goal by the baby-faced Spaniard, Torres. Last evening when she called, we were chatting, kinda like old times, about this and that and about the Euro Cup. Then she got another call (I am growing gradually to detest 'call-waiting').

It was her brother, in Germany, calling--as it turned out--to tell her of the passing of her old (90 years) God-mother. Europeans of Lila's (and my) generation, and earlier, put a lot of store in the relationship between God-parents and God-children. All that "It takes a village" stuff. They really were, in many cases, alternative families. I do not know if this was so of Lila's God-mother, but she told me later, when she called briefly back, that they had been close. At that time, she didn't want to talk.

Her voice sounded strained. The radiation's causing a lot of discomfort in her throat, especially when she swallows. She can no longer tolerate anything but room-temperature foods or liquids--and nothing spicy. Nothing hot, nothing cold, nothing carbonated. This too should pass, so I have a 12-pack of Weisse-bier, and a couple of bottles of champagne just for her next visit.

Ceteris paribus, we were watching the soccer game together today--though 1500 miles apart, she with her kids, and me with a dog. It was a pretty good game. Sad for the Germans that they lost. There's an old soccer saying: "Soccer is 22 men chasing a ball around for 90-plus minutes. Then Germany win." Today, it was Spain, taking their first EURO-Cup trophy in 44 years.

Saturday, June 28, 2008

A Musical Interlude, Part 2


Devoted to you...

Lila Chided Me Over My Obsession With Minutes When We Talked

Friday, for just over 30 of them. Each one as precious, and as sustaining, as a unique breath. I measure the good parts of my days by the minutes logged on my Skype account...

It sounds like she had a great day. Before going to therapy, she went to school and visited with a couple of here former students. An "auslander" herself (she's German, still), Lila was/is an advocate on her campus for the interests of the so-called 'international students.' These are the academic cash-cows who attend US universities from overseas, mostly on full tuition, or on scholarships in non-revenue sports. Often they are only of limited English proficiency--spoken/listening--though they read and write tolerably well. They often have no real representation in the councils of power at the schools they attend. Lila tries/tried to represent them at her school, as I did back in the day when I was a faculty person. You had to feel sorry for 'em, in a way. They were so smart (could you take advanced courses in a second or third language?), but often so out of place, and crippled by language.

Then she met for an hour or so with her old friend and dissertation advisor. I guess they told war-stories, as academics do. Later, she had radiation therapy, after which she and her daughter went to lunch and thence to a scarf-tying workshop, where Lila learned to tie a scarf that more suits her gamine face and style. She says her face isn't angelic enough to wear one of those Madonna-style halo-cloud wraps. She was always drawn to the art-deco/art nouveau, flowing, sweeping scarf look which, I suspect, suits her elfin features perfectly. She said she'd get her daughter to take a fone-foto of her in one, and in her new wig, which had arrived, she said, while she was in the hospital for observation during the week.

As we talked, Lila enumerated a lot of things she'd learned at the scarf-tying workshop which, for some reason about which she was puzzled, had not been included in the instructional portfolio offered by the Cancer Clinic, especially regarding hygene and hair. For one thing, the clinician at the session warned women against shaving themselves to the skin, either on their heads, pubicly, or anywhere else. Better, the person said, to leave stubble, if possible. Shaving opens up the skin for unexpected nicks, ingrown hairs, and therefore to possible opportunistic infections. If you are on these Chemo drugs, one thing you do not want is infections. The cosmetician also said, even when the hair falls out, folks in treatment need to continue to apply shampoo, etc, to the scalp, just to keep it toned and healthy. Left alone, as you might with hair thereupon, the skin and pores of the scalp can become clogged. (To the amusement of my then-partner, I one-time about 20 years ago, had an idea for a product i would then have called "Silk, the shampoo for every hair on your body.")

I suggested she write to the Cancer Clinic management with a list of the things she's noted in the management of the program, including gentle suggestions for improving, or amplifying, the care they now provide. My gal's 'critical,' in the 'critical theory' sense of the word. She thinks, connects dots, finds links, sees flaws. Given, for instance, the medical/health implications of shaving, per se, shouldn't that be a matter presented by the clinical staff? Wouldn't it be a good idea to provide the consultancy of a cosmetician with extensive experience dealing with cancer treatment patients?

(Non Sequitur Alert: I always make sure the last thing I write or say to her, anytime, is "I Love You.")

Friday, June 27, 2008

Details, details

Chemo cocktail:
1. MITOTANE: alters steroid peripheral metabolism, directly suppresses the adrenal cortex and alters cortisone metabolism.
2. AVASTIN: attaches to a protein (called VEGF = vascular endothelial growth factor), given off by the cancer cell to stimulate the growth of new blood vessels to support a tumor and then blocks the developent of these new blood vessels. Made from protein from human and mouse tissue. (This is the one that required she sign a release before they'd administer it.)
3. TAXOTERE: interferes with the cancer cell's ability to multiply and grow.

The Hulk Shot: NEULASTA: natural hormones that cause the body to make more of certain blood cells = speed the recovery of white blood cells. Gets to work on the bone marrow. People taking it claim they can actually feel the bone-marrow reasserting itself inside the casing of the bone; gotta be a weird, STRONG feeling, hence "the Hulk."

Next week they will implanted a subcutaneous port in her chest. This is connected by a soft, slim catheter tube that goes through my vein all the way to my heart. This catheter protects the vein during treatment. All they have to do is poke through the skin with some sort of special needle.

Nausea meds: Compazine, which, incidentally is also used to treat schizophrenia - I think it's one of the first anti-psychotic drugs. Apparentlhy it reduces dopamine in the brain. I can't find anything that says anything about the Vagus nerve (the one to which I referred, below)) in connection with this medication. Oh, it's not made anymore under the brandname, only the generic form. But I found this in some doctors teaching manual:
PRE-SYNCOPE AND SYNCOPE: Faintness, passing out, often associated with nausea, diaphoresis, tunnel vision, tinnitus, and palpitations. - so I guess fainting and nausea is related in some way. I need to get to the bottom of this!!!!!

Then there are steroids for use right before and after the chemo -

Then for pain:
1. Oxycontin - 20 mg, and I'm getty ready to take one.
and for breakthrough pain B-R/oxicodone - 5 gm

The disease is bad, and the drugs are hard, too. If anyone has information about the recovery regimen for this array of stuff, I'd be happy to know about it...

Thursday, June 26, 2008

Lila's Home! Whew...

Probably I don't hafta say I was so relieved I coulda pee'd right down my leg when I saw the flag for her IM pop up...

It was something, though nobody knows what. They watch her pretty closely because of the possibilities of bad reactions to some of the drugs she has to take. She was hospitalized for two nights, Tuesday and Wednesday, for observation when she started to uncontrollably vomit right after her radiation Tuesday.

I knew something was wrong. She'll always call, if she can. If she can't, well that bodes no good. It wasn't "BAD" bad, but it could have been. It always could have been, and always could subsequently be...Es macht mir Wahnsinnich!

The docs and techs were especially attentive to the vomitus, because one of the Chemo drugs she's taking has effects on blood-vessels, and so were searching for evidence of blood. Luckily, there was none. Their relentless attention to the stuff spoke well to me of their Hippocratic concern. They released her from observation, and after that she had her treatment, and got home I'm guessing around 2 her time. They've rescheduled her appointment time to 11 am.

We talked for nearly 30 minutes! And we worked out a regime whereby if something like this happens again--and god knows it well could--she'll leave a message for me auf Deutsch on her office phone, so that there's some place where we can leave messages. She erased the Mark Schreier call, so I can use that again in a pinch.

Funny, she said when she listened to the Mark Schreier message, and with the name to go on, she said she had a very different picture of the speaker than the one she associates with "me." I was, of course, controlling my discourse very strictly. Careful and clipped were my words, too; very business-like, and pitched my voice an octave down. She said she knew it was me, but couldn't recognize the accent. LOL!

60 Hours Now: Has Anybody Seen My Gal?

If Lila could have called me, I am pretty sure she would have, by now.

Which leads me to believe that, for some reason, she cannot call me.

Perhaps she has been incapacitated by the rigors of her treatment. She had complained about it, and the feeling of helplessness.

Perhaps she has encountered a(nother?) set-back.

I have no way of knowing, which drives me bat-shit crazy! But I think she would have called if she could. Which leaves me cold with dread.

I have looked on the local police blotter and checked the local paper for obits and not found any information. I called the local cancer clinic and the hospitals. The cancer center couldn't answer any questions, they said; the hospital does not have a recent record of admitting her.

Why does it feel like someone's sitting on my chest, beating me over the head with a fucking chair?

Next, I shall call her home, inquiring as an old colleague who has heard of her illness through a mutual friend. As an academic, she has concerned colleagues all over the world. It's plausible that one should call. I'll call around 9 a.m.

Why am I afraid to call? Why does my hand hesitate by the phone? What am I afraid I shall/might/could hear?

Okay. I'm gonna have a script, in case someone other than Lila answers the phone:
"Hello. My name is Mark Schreier. Professor xxxx and I are old friends and former colleagues. I heard through a mutual friend that Lila was taken seriously ill, and I was hoping to discover her condition, perhaps to talk with her, and certainly to offer her my support, and best wishes. Can you tell me anything???"
I got the answering machine. Left my message. Nothing else I can do, I guess...But I am worried fucking sick.

Wednesday, June 25, 2008

It's Almost 48 Hours Since I Last Heard From Lila

It strikes me that, absent some unforeseen complication, sometime within those two days she would likely have called or dropped an IM. Thus I think I am not unduly alarmist to worry that something indeed is amiss. Or something miraculous occurred, and they're out celebrating. I like that one, please...

I think I have about til I go to bed tonight--1030? 11?--with my customary pint of scotch in ballast, before I go pretty much shit-house rat-crazy with worry and/or dread and/or ignorance.

I have no way of knowing what's happening except via her own voice or hand. Yes, I know the number, but I feel confident that she would not--indeed, does not--want me introducing myself to her family and friends whilst she's in extremis. Bad timing. Given a few years, we mighta worked that out, too. But apparently that kinda time's a luxury.

Still, closing in on 48 hours, I don't really know wtf to think. If Lila were feeling okay--not good, you know? just okay--she'd have called by now.

Which makes me uneasy...like a stallion in a stable 'fore a storm...unnerved, edgy, inside...what's up? what's up? deprived of 'normal' cues, one blunders only blindly toward any bright point...

Strangely, there was just a sharp, brisk peal of summer thunder over the valley. No rain, but noisy, and efficient-sounding. The first of the year of our monsoon, perhaps. We all gasp in anticipation. And now the rain's blowing and spitting. I think I left a couple of car-windows open...bother...

Tuesday, June 24, 2008

After 9 PM back East, where Lila lives.

I dunno, but it's beginning to look like I won't hear from her today. The regimen of therapy really exhausts her.

Which is a bummer, of a major order. It's like a day lost irretrievably for me.

Probably, she had a bad day, and her kids are there. I am glad she has her kids there.

I hope for tomorrow, now. The best I can do.

Monday, June 23, 2008

Seventeen Minutes and Fifty-Seven Seconds

That's how long we talked, my Lila and me, this afternoon.

Today began her second week of radiation on the lymph nodes in her throat, almost all of which are compromised to some extent, and she sorta freaked out. When they went to put the immobility cast on her, she says she just lost it. The complete loss of 'agency' got to her. She was her illness and its treatment, and that was all. No Aristotle here: No 'excluded middle.' Everything is related: The cancer, and the treatment, and the way that the two things just take over everything. Everything you eat and drink, pretty much, is dictated, she says, by some 'health' or 'treatment' regimen or another. Sterilizing and cleaning and being careful, and studying and learning, and new information. More consuming than a full-time job, plus you get pain.

She said she just couldn't face it. She started to weep. Her son was holding her hand. It should be me. That's all I'm gonna say on that.

It appears there are divergent understandings of the clinical meaning of "nausea" which, printed on a battle of meds may refer to the clinical state of releasing tensions on the sphincters in the upper digestive tract, or the feeling that one i s in immediate danger of passing right the fuck out in the shower. The second meaning, apparently, is implicit, because the nerve that controls that part of the gag reflex also apparently stimulates unplanned unconsciousness. Science is wonderful, innit?

Lila discovered this only through the agency of her friend, a breast-cancer survivor who has been through the regime before and is providing kind of On-The-Job training to my gal in the subtleties of survival and resistance. I bless the woman daily, whom I have never met, for her generosity with time and information for my Lila.

I have improved my computer audio recently, with much bigger, heavier speakers, and am running our (skype) conversations through the speakers. It sound much better, like Lila's right here with me (tears seem spontaneously to accumulate in the corner of some eyes). But she says this cannot last much longer. She will eventually lose her voice from the constant bombardment of the radiation. It will eventually come back. In the interim, we can multi-medium...i can talk, she can text me; it's not like we're not gonna talk. She's my gal, I'm her man...I am an 'extra,' a "background artiste," on a funny, epistemological level, exactly the equivalent of the subject of therapy.

Sunday, June 22, 2008

It's the weekend, and my babe is gathering her resources for another week of treatment

More pain, and more pain-relief. A new prescription, which seems to help.

Earlier in the day, yesterday, we IM'd, exchanged pleasantries. Her son was there, and she said the pain and discomfort were enough that she neither had any desire to talk, nor did she have the energy.

Then, last night, 9 or 9:30 here (two hours earlier than where she lives) my Lila called. Her voice was faint, and she sounded like she was tired and in pain.

She said it was just to tell me she loves me. That hadn't happened in more than 6 weeks, and it made my night. I slept pretty well, too.

It only takes one of those every once in a while to boost the ol' morale back up to functional...

Saturday, June 21, 2008

A Musical Interlude

Friday, June 20, 2008

Re: The "Hulk" Shot

It is, indeed, the immuno-restorative shot.
They call it the "Hulk" shot because it is alleged that, after getting it, patients often actually "feel" their bone marrow growing back inside the bone casings. Apparently, the marrow retreats from the chemo/radiation shock, and pauses in its manufacture of vital life-preserving 'stuff.' The "Hulk" shot stimulates the marrow to rejoin the fight.

My Lila's having a bad day today, with a lot of pain. She says she cannot sleep properly. We talked for 4 minutes and 25 seconds (I'm not complaining!), until the discomfort overwhelmed her. I could hear it in her voice, weariness and pain...My own poor heart lies in sherds at my feet...

Thursday, June 19, 2008

Hulk Shot?

Day 4 of radiation. It seems to be getting easier for her. We didn't talk, only IM, so information's sketchy at best.

Lila says it's going "okay." Not much pain, no nausea (yet; apparently it's a persistent possibility.)

She said she got her "hulk" shot today. I don't know exactly what it refers to, but she mentioned a shot she'd be getting that would boost her immune system, cuz the treatments impede natural resistance. It would be timely, after a week almost of radiation and a chemo treatment, to apply such prophylactics at such a time, seems to me. Opportunistic infections are a constant danger in these things, I hear...

Anyway, my gal seems to be chipper, and that's the main thing. Keep her spirits up. She's devouring the various literatures that are implicated in her diagnosis (that's how phenomenologists think...We're both basically phenomenologists, which is why we don't have the problem of paradigm incommensurability. A phenomenologist might ponder over the significance of differences between a 'diagnosis' and a 'condition,' an 'illness,' and a 'disease.' Sort of, as in "The Raw and The Cooked," Levi-Strauss interrogates these various renditions of food).

Her sons (23 & 21) are over tonight to clean and do some cooking. And hover over Mom.

So we can't/won't talk today/tonight, which exacts a trivial twinge in my cardiac region. I'm just a little resentful, and at the same time, guiltily I feel sorta petty about it; cuz it's not often she has energy to talk, even a little, and we used to talk for hours and hours and hours, and the first thing she typed was that she was feeling good...so I wanted her to talk to me... And we mightn't talk again til Monday, worst case.

And really, the "old interstellar anthropologist" would claim (and not without justification) that as the interloper, I really haven't any ontological status from which to complain. Hell, he'd say, you've got it easy. (Think Mel Brooks:) "If you were tribal, instead of civilized, they'd have driven you both from the commune/compound, divided up your 'property,' and you'd have lived/died alone, together, since that was so important to you..."

OY!

But if I could hold colloquy with the OIA, I might reply in some such manner as this: "You know, you're right. I have absolutely no right to complain. All that I have any right to is my pain.

"I can imagine that this all sounds somewhat melodramatic.

"Hmmm.

"Well, it IS a pretty melodramatic situation, really. Life & Death, and all that, fraught with emotional undercurrents, mysterious narratives, impending tragedy, all the necessary elements (except, probably, the happy ending). So I only feel a little embarrassed to note, in my own cause, that I do not know how many more times I shall hear my Lila's voice, only that it is a finite number.

"And that makes every time a fundamentally non-trivial event. And every miss a loss."

And possibly that relieves me of some of the onus of harboring these self-pitying thoughts in the first place.

Wednesday, June 18, 2008

First Chemo Today. It apparently went well.

First they conducted Lila's daily radiation treatment, which apparently is always complicated by the need to get into and under the "masque of immobility," upon which are drawn out the target areas for the radiation devices. Tumors apparently are a very precisely targetable phenomenon. So the whole idea is to keep her immobile. I mentioned she's claustrophobic? (I told her when she's done with it, I want her to send the masque to me. I'll put it on the other pillow at night.)

Thence on to the chemo lab. I mentioned she's taking three chemicals: two to try to interfere with the dna of the cancerous cells, and one to try to dry up the ability of the tumors to create new blood supplies. The latter, the name of which escapes me for the moment, required that she sign a release based on the plausible possibility that such an effect could have disastrous consequences if it obtruded on a healthy, major blood vessel, or organ, for instance. She signed. That was the one they administered first.

They'd told Lila that the first administration of the drugs would take some several hours or more. That's because they administer them in series, not contemporarily. She brought a vid-player her son loaned her for the event, and a movie to watch. But she said there was too much going on to be able to attend to the narrative of the film. The clinic staff monitored her closely, she said. The chemical cocktail is pretty toxic. They also gave her an anti-nausea drug, because nausea is the number one reported side effect of these treatments. They kept her under close observation during the whole treatment.

Lila's begun to inquire into the availability of governmentally sponsored vs. black-market weed. Pot (well, the psycho-active component of it, THC) is also a well-known prophylactic against chemo-induced nausea. Government pot, from the farm in Mississippi, just north of Baton Rouge, is legendary. I've never tried it, however, and I believe this to be an unacceptable lacuna in my otherwise nearly universal pharmacopoeia of "Weed. My family name derives from the ancient plant taxonomy for hemp, after all.

We only talked for a matter of a few minutes. One or two of her kids were coming over, and she'd taken one of her pain-pills, and so we rang off. Too little time. But that's the story of our love, entire.

I am a slave to a Window: The IM window always open on the bottom line of my computer linking me with Lila's computer compels my attention any time I have been away and return. Lately, my worst times are when I return to find the fuukin Window blinking blue, meaning she sent me a message I wasn't here to answer my Lila when she called, cuz she always calls me to tell me it's okay to call her at home. We have elaborate telephonic protocols, designed to ensure that I do not call her at an inopportune moment, viz, her family. It has always added a certain 'frisson' to the proceedings. Less so, these days...