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...
Monday, June 30, 2008
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.
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
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.")
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...
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!
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:
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...
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.
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.
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...
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
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...
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.
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...
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...
Tuesday, June 17, 2008
Radiation Therapy Is Arduous
I was out on a movie set this afternoon, adding another 3-5 seconds to my 'best-of' trailer, when Lila called and left me a message. I'm always devastated when I miss those calls. Just home from chemo, again, she sounded exhausted, and frustrated. The discomforts she found nearly intolerable in the preparation for the radiation therapy--she's claustrophobic-- seem to be magnified. I "hope" (man, I hate using that word) she doesn't start getting into a 'rejection' syndrome because of the discomfort. She's a German gal, a scholar, a philosopher, and every minor (to us Murkins) inefficiency galls her on a fundamental level.
I can't say I blame her. What kind of inefficiency let her tumors grow undetected for two years or more? Seems a likely question, but wtf do I know, anyway?.
She had a non-oncological, life-threatening event in 2005 or 06. There either wasn't evidence of the cancer then, or they didn't find it. Stage 4, in early 2008? Already? C'mon....Sumbuddy fucked up, imnsho...
I guess we, more 'whole' (more whole? less damaged? ambiguously injured) ones, all 'wish' we could bear--could deflect, parry, absorb--some of the travail borne by our beloveds. (Is depression an avatar or a surrogate for this kind of pain?) We cannot. But our willingness counts for something, I think. Agape and Eros are not antithetical. They can--perhaps must--coexist.
**Hollywood Report: I was right in front of the camera all day. Over-exposure becomes a problem. With a lot of shots, it actually diminishes the chaces of getting seen. I got a featured profile in at least one shot, if it stays in. No 'bump' though. The camera was just about in my ear. They took lighting readings off my illustrious, glowing countenance. If i just may survive the cutting floor...My physiognomy is, in fact, better known in Calcutta than in Albuquerque.
I can't say I blame her. What kind of inefficiency let her tumors grow undetected for two years or more? Seems a likely question, but wtf do I know, anyway?.
She had a non-oncological, life-threatening event in 2005 or 06. There either wasn't evidence of the cancer then, or they didn't find it. Stage 4, in early 2008? Already? C'mon....Sumbuddy fucked up, imnsho...
I guess we, more 'whole' (more whole? less damaged? ambiguously injured) ones, all 'wish' we could bear--could deflect, parry, absorb--some of the travail borne by our beloveds. (Is depression an avatar or a surrogate for this kind of pain?) We cannot. But our willingness counts for something, I think. Agape and Eros are not antithetical. They can--perhaps must--coexist.
**Hollywood Report: I was right in front of the camera all day. Over-exposure becomes a problem. With a lot of shots, it actually diminishes the chaces of getting seen. I got a featured profile in at least one shot, if it stays in. No 'bump' though. The camera was just about in my ear. They took lighting readings off my illustrious, glowing countenance. If i just may survive the cutting floor...My physiognomy is, in fact, better known in Calcutta than in Albuquerque.
Monday, June 16, 2008
First Radiation Treatment Today: So It Begins...
Lila was pretty tired when she called. Not very communicative. I could hear it in her voice. She has to remain completely immobile while they are shooting the juice. They're blasting tumors on the lymph nodes in her neck. That's Step 1. It's a course of 14 treatments, over three weeks. It was uncomfortable, painful (she didn't have a working analogy, but said her whole face just 'hurt like hell,' which works for me).
Tomorrow's another radiation day, less rigorous, she says. Only a couple of minutes, with x-rays. Wednesday she starts chemo, with this exotic cocktail of stuff.
At some point in this, this week, I think, she's gonna have installed in her chest somewhere a sort of 'trap door,' a ready opening to her veins so that, upon the inevitable continued applications of sharp needles to weakened veins, and the veins retreat, and hide and get real cute, and it hurts like a sumbitch when they hafta go poking around for a good point of entry for intravenous treatments, they've got one. This is important because, as i understand it, part of the prospective treatment consists in implanting small, highly radioactive pellets at the site of the most aggressive tumors, but not all at once. As I understand it. This is pretty much third-hand.
Lila seems to have a command of the details, as one would expect. The technology makes sense to me because I had a couple stents shoved up my femoral artery into my heart a couple of years ago. Aside: the hospital that did my procedure does about 75-100 per week. It's like an assembly line...or a dissembly line...
So it begins. Wish us luck...
Tomorrow's another radiation day, less rigorous, she says. Only a couple of minutes, with x-rays. Wednesday she starts chemo, with this exotic cocktail of stuff.
At some point in this, this week, I think, she's gonna have installed in her chest somewhere a sort of 'trap door,' a ready opening to her veins so that, upon the inevitable continued applications of sharp needles to weakened veins, and the veins retreat, and hide and get real cute, and it hurts like a sumbitch when they hafta go poking around for a good point of entry for intravenous treatments, they've got one. This is important because, as i understand it, part of the prospective treatment consists in implanting small, highly radioactive pellets at the site of the most aggressive tumors, but not all at once. As I understand it. This is pretty much third-hand.
Lila seems to have a command of the details, as one would expect. The technology makes sense to me because I had a couple stents shoved up my femoral artery into my heart a couple of years ago. Aside: the hospital that did my procedure does about 75-100 per week. It's like an assembly line...or a dissembly line...
So it begins. Wish us luck...
Sunday, June 15, 2008
Treatment starts this week.
Radiation tomorrow; chemo on Wednesday.
I'm still a little unclear on the scheduling of it, but Lila's not, of course.
She spent a LOT of Friday getting fitted for the arresting gear she's got to have to assure that she doesn't move when they shoot the radiation at her tumors. She said it was an agonizing experience, just getting the cast made. Yesterday, she and her daughter went wig-shopping. She tells me she's about decided in a 'pixie' cut item, which should look very cute on her. She has a certain gamin quality about her, a sort of Audrey Hepburn aura, but red-headed...
She'll be getting what I understand is a pretty standard chemo regimen, two drugs which attack the dna of the cancerous cells and aim at preventing further metastasis, and one drug--for which she had to sign a special dispensation, because it is dangerous, possibly life-threatening--which works to prevent the tumors from making more blood vessels from which to feed. Her cancers do not appear to have invested any of her major blood vessels, luckily.
We started talking about when she'll be able to travel...not for a pretty good while, yet. Maybe in October or November, depending. She'll come to me; or at least, I will not go there, wherever it is we are able to rendezvous when the time comes...I don't know how long is needed for a person to recover from the treatments. Anybody?
I'm still a little unclear on the scheduling of it, but Lila's not, of course.
She spent a LOT of Friday getting fitted for the arresting gear she's got to have to assure that she doesn't move when they shoot the radiation at her tumors. She said it was an agonizing experience, just getting the cast made. Yesterday, she and her daughter went wig-shopping. She tells me she's about decided in a 'pixie' cut item, which should look very cute on her. She has a certain gamin quality about her, a sort of Audrey Hepburn aura, but red-headed...
She'll be getting what I understand is a pretty standard chemo regimen, two drugs which attack the dna of the cancerous cells and aim at preventing further metastasis, and one drug--for which she had to sign a special dispensation, because it is dangerous, possibly life-threatening--which works to prevent the tumors from making more blood vessels from which to feed. Her cancers do not appear to have invested any of her major blood vessels, luckily.
We started talking about when she'll be able to travel...not for a pretty good while, yet. Maybe in October or November, depending. She'll come to me; or at least, I will not go there, wherever it is we are able to rendezvous when the time comes...I don't know how long is needed for a person to recover from the treatments. Anybody?
Friday, June 13, 2008
Attitude Is Destiny
There's a LOT of literature on what has gotten it's hooks into My Girl, my Lila. There's a lot of literature on cancer, in general, too.
Which is a good thing, because being a scholar through and through, Lila will likely take the management of the problem--her cancer--as a 'project.' She's always done 'projects,' she tells me: knitting, gardening, she says her house is full of the residue of her projects. (Only me she doesn't regard as a project, thankfully.) Mebbe not unlike writing her dissertation, she'll comb the references, make notes, cross-reference stuff, find relevant statistics which she (because all ph.d.s since the mid-80s have had to take a minimum of at least two statistics courses) will be able to interpret competently. This is right up her alley. She'll thrive on the challenge, it will be good for her. It has already really helped her attitude, bouyed her up with interest and curiousity. The woman's a blooming genius, speaks five languages fluently. She's found a/the handle. She's such a smart, tough woman.
I am so glad she's found the desire to fight. She was morose at first. It wasn't, I thought, my place to insult her with polyanna-isms. She's been in such pain. I became pretty morose, too. But now she's seizing it She has such a good mind, and tests today showed the cancer hadn't proceded into her brain stem...So she's looking for a fight. Right-fucking-ON! my baby. High-heel sneakers! Put dat wig-hat on yore head! Go kick some butt!
I'm already learning a lot, too.
One of such things is that there are also a lot of web-sites with a lot of valuable information on them for people in these circumstances. A lot of it's pretty sterile, though. And I'd like as much as possible to avoid the pit-falls of self-pity here-- too much "reflexion," as the phenomenologists would call it--and to provide a service to the extent that it is possible, perhaps provide a clearinghouse of resources for other lovers struggling through this. If it might be distinguished in any way at all, it might be in how lovers-qua-lovers confront these, our mortal "adversaries." Mebbe if you find a site that's helpful you could provide a link and write about what you learned there, in less sterile terms.
Lila and I are lovers, in every sense. We truly relish each other: physically, mentally, intellectually, literarily, philosophically. And it was that way from the first time we met--well, as we separated for the first time was when it clicked. We both experienced it, she on the tarmac, turning for one last, hopeless glimpse toward the window of the terminal; me, there, where i had not been the moment before, my hands pressed on the glass, half-gasping from exertion of getting there in time: an amazing, immediate bonding, across space, through glass, and I'd bet space-time, too. We have as much pleasure of each other in bi-lingual jokes as in bi-labial pokes. Once she referred to me as her "Martin", and to herself as my "Hannah." That's flattery of an orgasmic order. If this "Chinchilla" became a rendezvous for lovers forelorn with hope, it might be a worthy enterprise.
So then, below "the Adversary" box to the right, I've set up a box for relevant links--"My Enemy's Enemies"--to share with such other readers as stumble upon the 'place,' or are directed hence from elsewhere. If you have useful information, please append links to the comments, and I'll plug 'em into the data base.
Which is a good thing, because being a scholar through and through, Lila will likely take the management of the problem--her cancer--as a 'project.' She's always done 'projects,' she tells me: knitting, gardening, she says her house is full of the residue of her projects. (Only me she doesn't regard as a project, thankfully.) Mebbe not unlike writing her dissertation, she'll comb the references, make notes, cross-reference stuff, find relevant statistics which she (because all ph.d.s since the mid-80s have had to take a minimum of at least two statistics courses) will be able to interpret competently. This is right up her alley. She'll thrive on the challenge, it will be good for her. It has already really helped her attitude, bouyed her up with interest and curiousity. The woman's a blooming genius, speaks five languages fluently. She's found a/the handle. She's such a smart, tough woman.
I am so glad she's found the desire to fight. She was morose at first. It wasn't, I thought, my place to insult her with polyanna-isms. She's been in such pain. I became pretty morose, too. But now she's seizing it She has such a good mind, and tests today showed the cancer hadn't proceded into her brain stem...So she's looking for a fight. Right-fucking-ON! my baby. High-heel sneakers! Put dat wig-hat on yore head! Go kick some butt!
I'm already learning a lot, too.
One of such things is that there are also a lot of web-sites with a lot of valuable information on them for people in these circumstances. A lot of it's pretty sterile, though. And I'd like as much as possible to avoid the pit-falls of self-pity here-- too much "reflexion," as the phenomenologists would call it--and to provide a service to the extent that it is possible, perhaps provide a clearinghouse of resources for other lovers struggling through this. If it might be distinguished in any way at all, it might be in how lovers-qua-lovers confront these, our mortal "adversaries." Mebbe if you find a site that's helpful you could provide a link and write about what you learned there, in less sterile terms.
Lila and I are lovers, in every sense. We truly relish each other: physically, mentally, intellectually, literarily, philosophically. And it was that way from the first time we met--well, as we separated for the first time was when it clicked. We both experienced it, she on the tarmac, turning for one last, hopeless glimpse toward the window of the terminal; me, there, where i had not been the moment before, my hands pressed on the glass, half-gasping from exertion of getting there in time: an amazing, immediate bonding, across space, through glass, and I'd bet space-time, too. We have as much pleasure of each other in bi-lingual jokes as in bi-labial pokes. Once she referred to me as her "Martin", and to herself as my "Hannah." That's flattery of an orgasmic order. If this "Chinchilla" became a rendezvous for lovers forelorn with hope, it might be a worthy enterprise.
So then, below "the Adversary" box to the right, I've set up a box for relevant links--"My Enemy's Enemies"--to share with such other readers as stumble upon the 'place,' or are directed hence from elsewhere. If you have useful information, please append links to the comments, and I'll plug 'em into the data base.
The Reason I'm Not There With Her
(Edited, July 6, 08)...Is not because I do not want to be there. I wish more than almost anything (e.g., she gets better) that I could be there. As I note in a subsequent post, above, she needs me or somebody like me there. And I don't think there is somebody like me there (mainly cuz really there is nobody like me, just like there's never been anybody like her...but i digress).
I am not 'there' because there's no place for me there. And that's because I am (and always have been, unfortunately) a 'complicating factor' in her life. Ours has been always an 'illicit' affair. She is married to and cohabitates with a man she doesn't love (hasn't, for a while), until recently mainly for her children. I don't know much about him. He seems to have been a good father, based on what I know of her kids through her. It may have become less important now they're (three of them: a girl and two boys) grown and out of the house. But her cancer (I wonder if she'll 'name' it, try tame it that way?) more or less abnegates any moves that would disrupt her domestic balance now. She needs her home, and peace, and not much drama, for the time being.
Me? Fuck-me-running, I'm "drama" on the hoof, innit? With a capital "D," a big laugh, and a long, white, unkempt beard...My mere existence threatens her domestic peace, say nothing of what my presence there would do. I shall keep my distance and await her invitation. It will come, eventually, I am certain (and hope, too, before the last extremity).
Something similar passed between us before. We were apart, totally estranged for nearly 8 years (through which time I loved her resolutely, if rather without hope). She harbored our love throughout, too, but she had three children to raise, and a career to accomplish, and a home to keep together, and I was really a distraction. So she ran me off, with a breaking heart, but with resolution of purpose.
I kept her eddress on my narrow-cast "copy-to:" list, to let her know I was still alive, but she never replied. The breach was total. But it wasn't permanent, and last year--within a couple of weeks after her last child graduated university--she called me back, asked if I was doing anything. Said she remembered i wasn't "beige," and she was sick of "beige," and was i busy? I wasn't, either beige or busy. Then we were together--at a distance, as before--again.
We're and have been always totally crazy about one another. It started the first evening we met, at a conference at UofI in Bloomington, In. Strangely (!), since we met and consumated our affair in October, 1998, we have spent no more than about 30 nights and days together. As well as hundreds of hours on the phone over the last year alone (Skype is a beneficence!). And scores of hours composing e-mails, back in the day before there was an IM app. We've been united again in person on two more occasions since last summer when we reconnected: Thanksgiving last year, and Spring Break this past March. A third had been planned--10 days in early May--and a score more anticipated, when The Cancer broke in. Still, this isn't over, by far...I am completely powerless, of course, but I am constant.
I can't complain. Th3 Cancer may have her goddamn lymph nodes, and her goddamn adrenal gland, and some bone tissue. But she gave me her heart, forever, a while ago. And we're resolved that we're gonna fight The Cancer for the rest of her, goddamn it!
I'll gotta get along with that. It's all I get...
I am not 'there' because there's no place for me there. And that's because I am (and always have been, unfortunately) a 'complicating factor' in her life. Ours has been always an 'illicit' affair. She is married to and cohabitates with a man she doesn't love (hasn't, for a while), until recently mainly for her children. I don't know much about him. He seems to have been a good father, based on what I know of her kids through her. It may have become less important now they're (three of them: a girl and two boys) grown and out of the house. But her cancer (I wonder if she'll 'name' it, try tame it that way?) more or less abnegates any moves that would disrupt her domestic balance now. She needs her home, and peace, and not much drama, for the time being.
Me? Fuck-me-running, I'm "drama" on the hoof, innit? With a capital "D," a big laugh, and a long, white, unkempt beard...My mere existence threatens her domestic peace, say nothing of what my presence there would do. I shall keep my distance and await her invitation. It will come, eventually, I am certain (and hope, too, before the last extremity).
Something similar passed between us before. We were apart, totally estranged for nearly 8 years (through which time I loved her resolutely, if rather without hope). She harbored our love throughout, too, but she had three children to raise, and a career to accomplish, and a home to keep together, and I was really a distraction. So she ran me off, with a breaking heart, but with resolution of purpose.
I kept her eddress on my narrow-cast "copy-to:" list, to let her know I was still alive, but she never replied. The breach was total. But it wasn't permanent, and last year--within a couple of weeks after her last child graduated university--she called me back, asked if I was doing anything. Said she remembered i wasn't "beige," and she was sick of "beige," and was i busy? I wasn't, either beige or busy. Then we were together--at a distance, as before--again.
We're and have been always totally crazy about one another. It started the first evening we met, at a conference at UofI in Bloomington, In. Strangely (!), since we met and consumated our affair in October, 1998, we have spent no more than about 30 nights and days together. As well as hundreds of hours on the phone over the last year alone (Skype is a beneficence!). And scores of hours composing e-mails, back in the day before there was an IM app. We've been united again in person on two more occasions since last summer when we reconnected: Thanksgiving last year, and Spring Break this past March. A third had been planned--10 days in early May--and a score more anticipated, when The Cancer broke in. Still, this isn't over, by far...I am completely powerless, of course, but I am constant.
I can't complain. Th3 Cancer may have her goddamn lymph nodes, and her goddamn adrenal gland, and some bone tissue. But she gave me her heart, forever, a while ago. And we're resolved that we're gonna fight The Cancer for the rest of her, goddamn it!
I'll gotta get along with that. It's all I get...
My Lila's becoming "Chemo Savvy"
She had her pre-chemo briefing at the cancer center yesterday (her treatments start next week, on Wednesday).Afterwords, she investigated their library, where she said she found shelves upon shelves of books and pamphlets about just about every aspect of the disease. She said she saw sumpin funny: There was a shelf for works about Cancer & Sex, but only one offering on it (which she appropriated). But she laughed when she speculated later with me whether the dearth of material was because of the subject matter itself, or that there was so little to say...I dunno...
Another amusing anecdote:
When Lila tells her (woman) friends about her cancer, she told me yesterday, they always ask 'which breast?'
When she tells 'em it's not breast cancer, she says a lot of women get a look in their eyes, like she's let down the side or something, as if by not having breast cancer, somehow she's been disloyal to the sisterhood...
She laughed and laughed...
It was good to hear her so delighted.
(PS: She LOVED my groping for humor in that pun in the Hed. But she loves me, so I guess that's not too surprising...)
Monday, June 9, 2008
She Told Me Tonight:"No Illusions."
Stage Four: they give the patient 4 to 6 treatments, mebbe 8, and then they declare "It's time to get your (temporal) affairs in order."
She told me tonight: "We know what's comin', don't we, baby?"...
I hope she'll invite me to join her, to participate in the rites.
This is my only one, and only, love...she loved me...I shall attend, if even only in the background. I am a "background artiste" after all.
Ever after, I am bereft, lost, an empty cypher.
She told me tonight: "We know what's comin', don't we, baby?"...
I hope she'll invite me to join her, to participate in the rites.
This is my only one, and only, love...she loved me...I shall attend, if even only in the background. I am a "background artiste" after all.
Ever after, I am bereft, lost, an empty cypher.
The thing I notice is that we've forgone "anticipation"
We've had the conversation: there's not much to look forward to.
Here's the story, in my own words.
Today, on the phone, Lila told me we can't have any illusions about this. She said it about her kids, but I knew, and she knew i knew what she meant. She didn't say she was dying, but we both knew that was the subtext of the message.
Stage 4.
She didn't say it,and she didn't have to.
Stage 4.
It went a long, long time without detection.
She told me she felt bad meeting solicitous friends. She didn't know what to tell them. I told her it was that knowledge that swallowed me in clouds of despond, like a 2x4 in an F-4 tornado. I did not know what it was that I might penetrate, but the momentum was too ferocious to resist. I never, ever, knew the words were so loaded: anguish, loneliness, despair, fear...
Stage 4.
She didn't say it,and she didn't have to.
Stage 4.
It went a long, long time without detection.
She told me she felt bad meeting solicitous friends. She didn't know what to tell them. I told her it was that knowledge that swallowed me in clouds of despond, like a 2x4 in an F-4 tornado. I did not know what it was that I might penetrate, but the momentum was too ferocious to resist. I never, ever, knew the words were so loaded: anguish, loneliness, despair, fear...
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