Saturday, June 11, 2011

'Bye, Baby...

Lila died this week, on the sixth. I learned it from her Facebook page. I had kept up with her from a distance. I hope she kept up with me, too. I loved her without respite, without reservation.

Three years ago, almost exactly to the day (June 8, 2008), we learned the nature of the illness: "Stage four" adrenocortical carcinoma, which had already metastacized into her throat, her lungs, even her brain stem, and probably her GI tract before they found it. The prognosis was always grim. Life expectancy with stage four ACC is seldom longer than three years. I still don't know how that happened, how that COULD have happened.

She had just spent a week with me, when she went to the docs upon returning to her hometown. That was in March. We were planning another meeting in June, then in August, then... The test results came back in mid-May. We managed to keep it together until September, but we never saw one another again after that trip to Monument Valley and the Grand Canyon in March. The pressure of the uncertainty/certainty of the disease, plus her family, and my helplessness made carrying on further too much to bear.

Ours was an on-again (instantly, and then for 2 years), off-again (8 years), on-again (18 mos) affair. One night, she called me after 8 years. She said "I remember you're not beige." And I remember the night she told me the results of the tests. We were in shock. Her voice had a painfully sharp edge to it as she said, "Well, Johnny baby, it looks like happiness just wasn't in the cards for you and me, for us, I guess." Then sorrow swallowed us.

Guess not.

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!

That is all.

Saturday, August 2, 2008


If this is ...

Hey thats no way to say...


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...


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...