Primum Non Nocere VI

(part one) (part two) (part three) (part four) (part five) (part seven) (part eight)


September 11, 2007 1:08:29 AM PDT

Hi - just got in from sitting bedside for a few hours, and wanted to let you know that things are somewhat better, if only because they didn't get worse. What is positive is the rest that Lisa is getting due primarily to the Klonopin pills. I'm hopeful that the doc tomorrow will cut back on the levels of long-acting Oxycontin every eight hours, with the other short-acting / as-needed stuff only utilized twice today. The enema didn't fully work yesterday, and they had to give her some type of castor oil / pre-colonoscopy-type milkshake, which I'm sure was delicious, to grease the gears that have been sewn shut thanks to opiates. As E pulls farther out of this, she can reflect upon these scrap-booking moments as little reminders of why not to turn around. For now, she still has little bearing on her bearings, or where they've gone on holiday, but it's a more positive report than three days ago.


September 11, 2007 10:50:22 AM PDT

"...things are somewhat better, if only because they didn't get worse."

I guess I've heard worse patient updates, but it does seem like slow progress is being made, and that the attending team of white-coated egocentric legal assassins may at last be achieving beneficial consensus (not that I ever thought anything beneficial or innovative was ever achieved by consensus, appropriate apologies for treading on the toes of the Hegellian Dialectic notwithstanding).

As for the gridlocked colon. After my major surgeries six years ago, one of those white coats suggested a daily dose of a fiber supplement, and the one he thought most efficacious is Konsyl. I take a dose (I use the easy-mix one) every day (shaken; not stirred) with orange juice, as one of the last things (literally) anyone over forty and/or who's had heart surgery wants to do, is have a heart attack while straining to have a BM...Nuff said.


Thursday, September 13, 2007 4:20 PM

Yesterday was a better day, as E had gained back a fair amount of lucidity. I'm sure that had everything to do with sleep, and in no small way because she hadn't had any of the every-two-hour shots of IV narcotic available to her in a few days. She was still being prescribed the same amount of most of the drugs, with the one doctor controlling the pain meds and the neurologist controlling the steroids and Depakote. The long-acting Oxycontin, which is still at the horse-choking levels of 80mg every eight hours, was left the same by the main doc yesterday morning. Hours later, the neurologist came by and decided that the steroids had done enough, and took her off the IV of 500mg twice a day, to be replaced with 60mg a day tablets. A rational person might consider that a bit drastic, especially given E's recent medical history. Of course, there is no communication between the two doctors. During the hours I spent with E in the evening I noticed her breathing change, and her state, while sleepy (she's still taking Klonopin), was extremely sedated due to another 500mg of steroids not being hooked up to her in the afternoon. The next eight-hour dose of 80mg of Oxycontin was due around 1 am, and we (my mother and Lisa) decided to postpone it a few hours, as my mother has noticed her problems have been most pronounced in the morning. My thinking was that the dosage should be cut down, halved or at least cut, in an effort to taper down, especially because we have the advantage of E getting sleep due to the Klonopin, and that the Oxycontin, with which her body is no doubt very familiar, will nonetheless hit her body hard now that there will not be 1000mg of steroids standing in the way. Around 4 am she woke up with a sizeable headache, and was pretty miserable, even with taken the short-acting Oxycontin available to her. A call was placed to the neurologist an hour or so later, and he directed that 125mg of steroids be administered with no further instructions. When I last checked with my mother, around 12:30 pm today, she said she saw him down the hall but he took off running.

So, the diagnosis du jour remains to be conjured up and implemented. But E's brain was in much better shape yesterday, and her main doc was even talking about releasing her by the weekend - which means detox at home, a mildly daunting prospect...

Hard to say - E is still of the mindset that self-medicating makes more sense when she doesn't get what she wants from medical personnel. The pro / con arguments and emotional cliff jumping have been considerable within that hospital room. But she did have a better day yesterday.

-----------

Latest: The neurologist has directed that another one-time IV of steroid be administered, and then up the pill form to 100mg a day of the Prednisone. I have been politely asked to abstain from visiting today - though I've been pretty good, E's a bit emotional, and she and my mother are talking some stuff out. I again reiterated that just leaving things where they are is not merely treading water, it's back-peddling toward the tsunami. I all but begged again to have my mother confer with the pain-meds doctor to cut it down from 80mg of Oxycontin three times a day to anything less every 24 to 48 hours (60 mg three times a day, then 50, etc.). We will be in exactly the same situation if, two weeks after being admitted to the hospital because the headaches were getting so severe at home and the Oxycontin wasn't working, E is released with the understanding that she should just take Oxycontin should she get a headache - alongside the Oxycontin she's already taking "just because," whether it's due to joint pain or trying to cope with Britney Spears' recent performance at the MTV awards.

Beyond illogical - but what's new?


September 13, 2007 9:59:53 PM PDT

Of course it's beyond illogical, and the prospect of releasing her to live at home in a fog of self-inflicted medication is more than daunting; it's tragedy waiting in the wings for its cue, but how long will they keep her in hospital?

I hear your frustration, and, through you, theirs.

You may have to accept that you can no longer influence the outcome of this train wreck, but are relegated to waiting at the bottom of the cliff with a safety net that, no matter how well intentioned, will not serve to break the fall. Yet, you cannot leave.

I'm surprised that one or more of the attending have not yet certified E as chronic, incurable, and relegated her to a nursing home for the limit of her insurance. It would not surprise me if they do just that, and that way they won't have to re-admit her the next time.

I'm happy to hear about the regained lucidity. Does she herself want to go home?


Friday, September 14, 2007 11:22 AM

E is due to be released this afternoon. A referral to a new neurologist at UCSD has been set up, as well as an appointment with a pain management doc in a few days. She has also been assigned her own Blue Shield caseworker to oversee what's going on. All positive things, all things considered.

Yes, it is a bit frustrating being able to see the future.

Their frustration - if by "their" you refer to the medical personnel - is based on self-preservation, as someone on their watch is now addicted to narcotics on top of everything else. These people have more respect for the animal they're about to eat at lunchtime. I accept it, and am (relatively) fine with it; unfortunately, E and my mother cannot.

That said, E and my mother, and their frustration, have often gone different directions. My mother has put her foot down repeatedly during this most recent stay, and that's good, and necessary. I suspect that this would be a lot easier to flip that switch in E's head if her mother was fixing heroin for her every time E said "ouch - I hurt."

As to my influence...well, my level of influence is limited to removing myself and my son from such a negative vortex of self-destruction - that would certainly influence the situation. But then, that would be a bit crass, wouldn't it? However, it is increasingly difficult for me to treat E like a terminal cancer patient...I just won't subscribe to that....

How ironic, and sad, that the one person who thinks we shouldn't have to live with pain has lived with so much pain...

E may not realize for some time just how close she has been to being relegated to the drug/psyche column during the past two weeks. A stroke of the pen and everything would fold up neatly for doctors, staff and insurance, with E left to go completely batshit is a sea of tears, confusion, anger, diminishing narcotics and her obvious neurological disorder. Am reminded this morning of the congressmen who trumpeted "WMD's" and "mushroom cloud" and now say "but the price of oil" with the same conviction...they're not losing any sleep...

E does want to come home. The romance of just taking it to the ER and letting them shoot drugs into her wore off after a few days.

She should be home later today.


September 14, 2007 1:55:32 PM PDT

I both hear and understand the mixed feelings in your words, and I believe, as I indicated in my last message, that her being assessed as chronic whatever and thereby relegated to limited ex-cathedra care (and that excludes re-admission), was, I'm sure, on the table at the last meeting of the How Can We Deny Further Expense Bean Counter Committee. I do hope the assignment of a personal caseworker is in her best interests, but fear that it is not.

The referral to UCSD is promising. At least, in a teaching hospital there is access to higher echelons of consulting, and, just maybe, the random collision with someone who may say "oh, yeah; had one of those. Here's what worked."

Yes; it's frustrating to think you know the future, but leave yourself open to be wrong. I was.

I think that most of those white-coated assassins came out of medical school with a genuine desire to heal, and with concern for those upon whom they would lay their hands. I saw that in their eyes at graduation. The system under which they are then held captive removes those impulses by trans-urethral surgery. They just aren't allotted the time to care, and, barely enough to cure.

When D was moonlighting, earlier in his career, with Kaiser Permanente, he soon realized that his assigned daily case load would not allow enough time for anything resembling a comprehensive examination of his patients. In short, it was a "tag 'em and bag 'em process not unlike an industrial assembly line where perfection and/or quality control are done with a Monty Python "nudge, nudge, wink, wink". He did it when he had to, but not for long...

E's docs are trained to (and I'll coin a phrase here) "prescribe by test result and initial observation". They just don't have time for much thinking or discussion before she's already deleted from the cache of the moment and it's on to the next victim. For most, the system seems to work, and provides non-lethal care to those who can afford the price of admission. As with many other disciplines designed for mass consumption, the esoteric id often lies outside the scope of practice. Call it Wal-Mart medicine, if you will. It seems to be what we're willing to pay for.

You have no idea how glad I am to have the care I get at the Naval Medical Center. Every time I think of moving to anywhere I could actually afford the roof over my head, I realize, in the next breath, what I'd be giving up.

As for your desire to "remove yourself, etc.", no, it's not crass. My father did it; your father did it; and, to a great extent, I did it. Different reasons perhaps, but we are, after all, not serving a sentence in our brief tenancy on the planet....or are we?

The only thing you may need to subscribe to is that you may not be able to make a difference. I do hope you'll continue to try, but, in one of the few words of Russian that I remember from my childhood, pavol-yeh, pavol-yeh.....I think it means slowly, and with patience....


Saturday, September 15, 2007 1:32 PM

E's first afternoon and evening back went fairly well. Whether it will only last as long as the steroids I can't say, but E is ambulatory, and not racked with joint pain. After watching her do the nodding thing for a while, I again asked my mother to consider cutting down the Oxycontin dose. (My mother and I are hanging on to the pills, and as I noted before, the last cut down was this past Sunday, several days ago.) We agreed to give E 1 &1/2 pills at her eight hour dose last night, cutting the level from 80mg to 60mg. E still has short-acting available to her four times a day.

My mother has been with E almost around the clock, and when this blows over that will again be seen as enabling, but for now it is invaluable. I'm a patient person, but couldn't hold a candle to her level of perseverance in this matter - though I'm sure the whole affair would look quite different if E and our mother watched as doctors rolled the dice with my son's health and mental acuity as I felt I'd traversed too far to turn 90 degrees and say "fuck it," and instead continued letting him nod out like any other junkie on the couch in between requested doses. Too harsh? Maybe...but factual nonetheless.

It's a better day, ATC (I'm just going to stop writing that out...). E made herself an omelet early this morning (good), but a little freak out followed hours later when she came down to get ice and her cup slipped and hit the ground (bad - wanted more "medicine"). But none of it took place in the hospital...

As for crystal balling (excuse me?)...I am without question quite certain that the ledger containing times I got it right would require a sheriff's posse to locate and high-powered lenses to view, while the other ledger is easily seen by a passing space shuttle long before re-entry...but...trimming away all the other (relevant) factors, one constant remains: narcotics kill pain, narcotics are habit-forming, narcotics create their own pain in relation to habitual usage, etc. etc.; it's not the most complex feedback loop, as I know you know...

And, like most everything you've said about the white-coated assassins:

"They just don't have time for much thinking or discussion before she's already deleted from the cache of the moment and it's on to the next victim."

I couldn't agree more...who has time for lengthy analysis? Even if there was time, what possible benefit is there putting too human a face on any particular human? Overall success ratios will be affected...I can't be the only civilian that understands this...E was shocked - shocked - when her neurologist said that, overall, she's been doing pretty well for the last four months, right? completely oblivious to the two months of severe joint pain, the month and half of brain fog due to the Depakote fiasco, her work/school livelihood completely sidelined as she sat at home and became addicted to painkillers...it's really not so shocking...

I, too, think that most doctors graduated seeing something altogether different on the event horizon than that which was actually lying in wait. The closest I've ever got to med school is driving past one, but I suspect the hours of course work devoted to successful navigation of an industry dominated by HMOs and Big Pharma is somewhat limited. Perhaps I'm wrong...

Also - and then I'll shut up - I guess the reasons we collectively step out to whatever extent are merely some subset, perhaps interesting, to the fact that we do step out. In my case there were puh-lenty of mornings where I didn't get up and make waffles, blow loving razz-berries onto sleepy kids' skin and plan a day at the park - often because I was just going to sleep myself, but also because it was just so dysfunctional at times that a slight detachment equaled a hint of self-preservation. It is a policy everyone in that house up in Seattle adopted, and I'm sure it was one that's hardly unique. My mother and sister have been extremely kind to let me stay with them during this little regrouping of my own these past months, and I only hope that whatever man-around-the-houseness I provide helps fulfill their days. Overall, it probably does. Though it would sadden me if I said mu son and I will now be around the corner, as I am unable to give my tacit approval of having my son around such wanton drug usage, it would be the truth. But we'll see - I'm here, and "trying" to do the right thing...not a big fan of the word "trying," by the way...

Pavol-yeh is right...


Copyright 2007-2008 Jexican Publishing. All rights Reserved.

Primum Non Nocere V

(part one) (part two) (part three) (part four) (part six) (part seven) (part eight)


September 09, 2007 3:33 AM

Sorry I missed your call earlier - unfortunately, today was not that much better than yesterday in some respects. E, for the most part, is no longer exhibiting facial droop / right side paralysis anymore, but she is also no longer operating with both feet in the real world.

The level of drugs is astounding and, worse, E is adamant about needing everything they offer her. My mother and I, while not exactly on the same page, are nonetheless forced to choose between tricking her while telling the doctors / nurses what to administer and what to ignore (some of it is "as needed"), or letting E hang herself in a sea of confusion, pain and narcotics. Sadly, E thinks (still) that grabbing pills from the "help," then saving them for later is a good thing. She even thinks that we should be proud of her, as she is not taking them.

I wouldn't call it dementia, but it is running the gamut from not remembering she ate a sandwich or had a pill minutes after she has, to calling boyfriend Miguel this morning and saying she's going into surgery (no idea where that came from), to expressing a need for vigilance lest the staff start cutting down her meds, as that's what they did to our father, inciting his demise, etc....there's little rational thought at this point...white folks would say it's time for an "intervention" by now...

Of course, everything I say is wrong, though I have moved on to addressing a drug addict, however temporary, and am no longer spending time discussing strategy with E. But my mother knows that, as bad as it is, it will become much, much worse when they label her psych-something or a drug risk. And then there is what will ensue if they discover she's trying to self-medicate (no longer successfully I hope - but I'm only there a few hours at a time, and my mother is exhausted). I suspect she'll be asked to leave the facility, and when it goes through the HMO chain some pencil pusher will look like a hero saving Blue Shield another potential 80K by canceling her policy...

A psychiatrist came in today, before I got there, and E is angry about that. But the psychiatrist was right in saying Lisa needs to detox immediately, as an outpatient, ASAP. Then she prescribed a Prozac substitute, and then a Klonopin (sp?) as well for rest. I've taken the latter once before, and actually got a good night's sleep.

This is what's being poured into E's system daily:

80mg oxycontin (long acting pill) every six hours
10mg oxycontin (short acting pill) every four hours (as needed)
2mg diladud (IV) every two hours (as needed)

1000mg prednisone daily (IV)
250mg depakote 3x daily (pill)

verapamil 80mg 2x daily

valium to relax, though now replaced with the klonopin

Add to that a few other things from insulin to ibuprofen to vitamins to stool softeners that don't matter so much; it's the first three - WAY stronger doses than anything she had at home, even though that was getting out of control - that have her zombie-like, and then that level of steroid comes in and she wants to take apart a Chevy small block, but not notice why.

And (of course), this is all coordinated as if the Pentagon had orchestrated it: thousands upon thousands of dollars for RNs and CNAs to come in every hour and ensure that she gets no solid rest, following (uncoordinated) doctors' orders, and then stepping right back out of her life after playing their part in this slowly unfolding tragedy, and wishing her well. And meaning it - they're generally good people.

Still - I don't bother saying it aloud - I'm thankful that this isn't unfolding just about anywhere else in the world, as it could be so much worse. Also invaluable is my mother's availability, though it's become clear, if painful, that the enabling has to stop. E is going to hit that wall one way or another; and everyday that goes by where she increases her tolerance to opiates, which, I believe, is increasing her discomfort each time they start to run out, and with her mental acuity hovering around -4...well, that's only metastasizing the size of that wall to be hit.

I apologize for making this so grim, sir, though obviously I'm not "making it." I think my policy given the current parameters has been pretty clear: Sleep - if possible, give her the sleeping tabs that are available to heroin users these days when they try to quit, as those pills have some success in allowing an individual to sleep through the majority of the withdrawals. I can't state it like that, obviously, but I'll try to reiterate tomorrow, with my mother's help, that that's our goal for now, a human body healing (and shouldn't it be yours, doctor?), and gingerly point out that it would behoove all of us if we reverse this catatonic / speeded out trend in E's demeanor.

(I'm not holding my breath.)

E has to want it, but as I've mentioned, her thoughts are so foggy that she's relinquishing all those rights. It pains me to say it, but she needs saving.

I'm suppose if Miguel were capable he would be there; thus far, it's been my mother.


September 9, 2007 12:29:38 PM PDT

To say that it's time for an intervention is an understatement. I think that most interventions are undertaken long past time and perhaps that is so here. The problem of course, is that in such a confrontation between good and evil, evil may win (apologies to Zarathhustra).

When I read what has become of my niece, it breaks my heart, but even so, I want to be kept in the information loop.

I'm glad you have backed off the confrontational approach no matter how (rightfully) deserving it was. I'm reminded of a quote from Robert Downey Jr. either on his way to, or out of one of his many trips to drug rehab, when he said "It's like I've got the barrel of a shotgun in my mouth, and I'm beginning to like the taste of metal"..

It does little good to try to rationalize reality with one no longer capable of understanding the concept. I've lost count of the number of years that I tried to do just that, until I began to grasp the concept of co-dependency which, as is true of all co-dependents, I was convinced either didn't apply to me, or that, this one time, I was going to make a difference. It didn't, and I didn't. It was only when I stepped out of R's bursting radius (try to imagine yourself driving by a park across from a homeless shelter and seeing your son there, at home with the flotsam and jetsam of the city, and willing yourself not to stop and at least give him $20). When he finally realized that his life choices were entirely his own, he pulled the needle out of his arm and his head out of his ass, but, he's never forgiven me for not having done "more", even though that "more" might have been arranging for the cremation of his remains.

I don't know where to go or what to say to make E better, but I'm glad you're there. I did offer yesterday to sit with E for a bit so your mom could at least have a break, but I'm not sure how able I'd be to assist E to get to the bathroom with IV connected, etc. We.d also be glad to feed the Jimster; the cats; the ugly dorg II; the geraniums, or anything you can think of. I mean it.

Your concerns about the possibility of some valiant bean-counter siezing an opportunity, if presented, to turf E out of the system is a valid one. No reason must be given them to do that, and I know you know that. No evidence of non-compliance; no threat of litigation; nothing.

No, you aren't making it grim; it is grim.


September 9, 2007 12:31:03 PM PDT

So far today:

Went back by around 8 am - the Klonopin from last night did allow for some sleep, and has been prescribed thrice daily. The psychiatrist apparently made it known yesterday that she feels E's major problem is the huge amounts of narcotics, and that scaling back immediately is necessary (hmmm....). The doctor covering for her main doctor conveyed as much this morning, and stated that a reduction will commence tomorrow, as ordered by her main doctor. E's comprehending bits and pieces, as the Klonopin seems to have overridden everything else, at least somewhat. She wasn't insisting on pain meds, and in fact thought that her long-acting Oxycontin, the massive 80mg / 4x a day was only 3x a day. I slipped out of the room and caught the Sunday doc in time, asking, "I don't know if you are able/willing to make this call, but..." E's dosage of that one drug is now 3x a day, and I'm hopeful that she will remain sleepy enough to not notice the triggers, real, imagined or constructed, that would otherwise have her asking for the other two, the short-acting Oxycontin and the Diladud...it's a start...

I left without asking my mother to go home; they've given E an enema this morning, the necessary response to that poppy field she's had in her abdomen all week, and it's understandably embarrassing (though compared to...). I'll be checking back in later.

The neurologist is due in sometime today, and - maybe - he can make that call reducing the steroids back to 500mg instead of 1000mg every 24...if it "holds," the lack of hemiplegic migraine symptoms, I think the transition to oral steroids for the taper is entirely possible within a few days. The IV, a delicate situation in itself, has been there since last Sunday, and they don't want to try and start a new one, the last attempt taking a couple dozen poke-sies...oh; what I was trying to say the other morning, but had my terminology incorrect, wasn't "stick," but "pick," and it's when they run a line straight into the heart. For now, that option isn't even in the dining room...my mother is adamant about that enough for the both of us.

So, a faint glimpse of maybe...will keep you informed...thanks again for being there...


September 9, 2007 12:38:02 PM PDT

I totally agree with the R D Jr quote, and have often been thinking aloud (to me mum) that one attributed to Mick Jagger when referencing others around him: "After awhile, the person's main focus is on obtaining more of the drug. No matter what."

I'm sure one of two others have reached this conclusion as well...I certainly have before...


September 9, 2007 4:17:22 PM PDT

Beg pardon...(sleep, come hither!)...I meant, with motto sarcasm, one or two others have reached this conclusion, meaning such as any honest health-care personnel, or just unlearned pipples like me, who have come in contact with those who have mortgaged everything of theirs and a fair amount of that belonging to others in the pursuit of consumption, the payoff of which rarely, if ever, does little more than achieve parity, at best, but by default relegates those pre and post-wake to the "externalities' column...not that I'm trying to be "deep"...

Miguel, according to the definition of the two types of man passed down to my parents from Great Uncle Irving, is of that second tier: He who doesn't know he doesn't know (and therefore can't be helped). A go-to guy in several international business disciplines, I'm sure; however, timid of hospitals and apparently impervious to "if this, then that" logic 101 concerning his girlfriend. That is hardly a solution set here...

It is difficult - make that impossible - to imagine what you were going through with R. That the story might have ended with the father burying the son touches on another constant - that, regardless of birth, letting drugs take the helm can create something with so much desperate inertia...it doesn't discriminate, does it?

But, unlike everyone that comes to mind in my personal experience, at least your son made it. As did my father three-plus decades before him. Exceptions to the rule, both. So very few are afforded as much. Somewhere, in some eventual short stories...DE LA MANO DEL SOBRINO!...er; sorry, that just sounded cool...somewhere, I'll probably scribble a couple of them out someday. Delightful reading...

Both the UD2 (current moorage at Legs Akimbo Sofa, San Diego, CA) and I thank you for offering to come by. I suspect it will be a few more days at the saucepital, and am hopeful that the worst is over. I can live with E not liking me much as long as E can live with E actually living.


September 10, 2007 12:55:55 AM PDT

Updating: Checking in with my mother, who has been getting decent intervals of rest there in the reclining La-Z-Boy now that E is more sleepy, has reports coming back more positive than yesterday. E's neurologist stopped by, stated that E certainly appeared better, and reinforced the consensus that we've already hit the ceiling on pain meds, period. My mother corrected E's responses when they went astray ("I haven't eaten or slept in days, am in pain constantly" and the like), and there was some common, positive ground acquired, which we can all tell E about at some future date. He does want to wait at least one more day before dropping the steroid level, which is massive and necessitates keeping the IV in that much longer, but, all things considered, this was a glass-half-full-day in my eyes...

E was already asleep the last time my mother and I spoke around 8:30 this evening, and the big concern throughout the day - what E said and what was truly bothering her - has been her insides being so blocked up. The enema earlier this morning did generate some activity, but not enough - her stomach was actually distended, and may still be somewhat. But...maybe...that wall with which she has an appointment won't be quite so tragically thick...

(Half-full, ouí? Just disregard the Mattel logo at the bottom of that Beijing '08 sippy cup, right?)


Copyright 2007-2008 Jexican Publishing. All rights Reserved.

Primum Non Nocere IV

(part one) (part two) (part three) (part five) (part six) (part seven) (part eight)

(Part four in this series about a loved one's experiences with the medical community and its bountiful array of prescription drugs as witnessed from my vantage point. From here on out the installments are to be lightly edited journal entries or emailed inter-family correspondence, which is what they've been already in many respects. Note: Because the subject matter is so damn depressing, I've opted to include some of the electronic repartee between myself and a benefic and thoughtful uncle even when it veered away from the latest unpleasant details surrounding his niece, my sister. My uncle's commentary is italicized in that which follows. I'm not saying it will help; but vestiges of lightly battered Judaism as a child remind me that it couldn't...you know...)


September 2, 2007 1:41:32 AM PDT

Just wanted to let you both know that E was admitted to another hospital room again today after a trip to the ER. The major headaches started up again late Thursday / early Friday, and there was noticeable drooping of the facial muscles on and off yesterday (Friday), along with migraines that became more piercing and continuous last night. She and Mom were considering going in yesterday, and of course I was against that unless she's all but flatlining. I sat up with her until about seven a.m. this morning, like one would a sick child, and there was some headway made by introducing such black arts as deep breathing and fixating attention on slow exhalations instead of concentrating on grabbing the forehead in (understandable) agony. But this was tempered with large increases of Oxycontin, which I'm sure hurt as much as it helped, as she has been on that steady for over three months now, and around noon today E felt as though this couldn't continue without the Pomerado ER coming into play.

Worse, it was blatantly apparent that during the ten minute ride to the hospital E's symptoms markedly increased - she needed a wheelchair when we got there and looked like she had had a stroke again. She is in a lot of very real pain on top of the debilitating side effects from before, but once the decision to go the ER had been made she changed almost on cue. It's not quite as simple as that, but it almost is.

All other things were relatively equal as far as diet, medication and so forth on Thursday when we went to see a rheumatologist. She had become extremely immobile with joint pain after getting a little better in recent weeks. Mom had asked me to look into contacting an attorney, as things seemed that desperate with E's joint pain, hair loss, etc., due (probably) to the massive amounts of steroids she was on with (possibly) the large overdose of anti-seizure medicine wrongly prescribed also having some lasting effect on other parts besides her brain. I prepared a brief and contacted a few med-mal attorneys, with two politely declining and another speaking with me for a long while and concluding that it would be very difficult with E's medical history, which would be brought out into the open, and that (according to this lawyer, whom I suspect is right) they almost never settle in a med-mal lawsuit. I have been all for getting an attorney as long as "we" are all cool with E potentially not having the same access to health care five minutes after that attorney does anything; I have, however, felt very strongly that we should change E's doctors immediately, whether by saying something generic like "trust issues" or exposing them for (a) fucking up a prescription and (b) doing nothing about it for weeks, and why we feel that isn't optimal health care. As we left the rheumatologist's (who found no signs of arthritis to be causing E's inability to walk normally), I emphatically stated as much when E again declared that she felt it important that "at least" she now has doctors that will "work with her," including admitting her to the hospital "when" another event happens, etc. I couldn't disagree more, and felt keeping my mouth shut any longer was equal parts enabling her / inviting more doom. One doctor is negligent; the other's a drug dealer, also negligent.

It's quite possible that that only added to the stress already welling up inside her, with a later trip to her primary doctor (the drug dealer) that afternoon only adding a bit more. (Surprisingly, he spent an hour talking to her about getting her off all these drugs, which is good, but probably triggered her fear mechanism moreso.) By Thursday night / Friday morning it was obvious she was on that precipice again, teetering. I'm convinced now (perhaps more than before) that this is a stress-related affliction as much as anything else; and while we all would like the magical answer that unlocks the origins of this riddle, I can only think that the best thing to do with the large amount of risk present is to break down everything absorbed, from drug dosage to hours spent in front of the tele, into two groups: Will this (any) action help or hurt E's current status of well-being? It's hardly mystical, but then again I can't pretend to know how clear my thoughts would be after months of opiates and lobotomy pills...ridiculous...

A big dose of sleep and some concentrated relaxation would have worked miracles, but it was not to be; instead migraines, Oxycontin, migraines, Oxycontin, etc.

I can't say that this will ever be resolved mentally with her - and that is difficult to write, as defeat feels like garbage - but I / we have to be realistic about how, fucked up as it is, there is something familiar, even perversely secure, in E handing the reins to all this over to a hospital bed. She is convinced the answer, or at least the temporary answer, lies there; I am not. She is also constantly handicapped these days, whereas I am not. Mom is somewhere in the middle. For tonight, E has IVs with morphine and saline, and she took some Valium that, hopefully, will allow her to sleep - something she needs more than anything right now. I have a feeling the on-call neurologist will want to start with steroids again in the morning, and I guess we'll take it from there.

They have their cell phones; it's room 305 at Pomerado Hospital. And of course I'll figure out how to use a Samsung keypad myself should anything else arise...just too damn chipper to do it tonight...


September 2, 2007 11:18:01 AM PDT

How very sad....

As you know, without my input having been solicited, my firm opinion has been that this is not the time for litigation. I guess those attorneys you have contacted thus far agree that this case is far from a slam-dunk, will be protracted, and that E's medical history may not be helpful, if presented to a jury....There's little doubt that she has been wronged by the incompetence of her providers, but compensation for that may prove elusive at best, and, at worst, may not be in her interests if she is turfed out of the only care she now has available.

I hear your frustration over what you think is the right course of action in E's best long-term interests, but this has now become the classic struggle between good and evil for possession of E's soul and I'm not sure that whether or not you happen to be right even matters any more.

I gather that E was fine all the time she was in Albuquerque and then had a serious setback on returning?

If I knew nothing whatsoever about this case, and just read your email, the choice she has made would be obvious. At home she has you trying to impose a holistic lifestyle upon her, which, though arguably may be in her long-term best interests, she has never chosen for herself, and may never do so, despite your loving best intentions. In the hospital, she gets relief from pain, drug-induced sleep, and some freedom from constant observation, no matter how well meaning.

No matter how many family members loved them, or tried to steer them toward healthier choices, that never prevented me, your father, your sister, or my younger son, from making choices that resulted in great harm to them (us). In some of those cases, at least, we (they) chose to choose away from such observation, not matter how well-intended.

I don't have even the shadow of an answer to offer after all of the above, which you probably already knew, and I'm certainly not suggesting a hands-off approach which leads E to continue to make the wrong choices. So, what am I suggesting? I'm thinking......

I am beginning to believe that she is finding it easier to accept disability and medication than to accept a holistic lifestyle being forced upon her, no matter how subtly.

We'll try to drop in to Pomerado tomorrow.


September 2, 2007 1:16:12 PM PDT

Just spent an hour conversing with Brother J and now about to depart for el 'ospital...

Briefly:

You're exactly right about the attorneys; my mother contacted me from NM because E's condition had deteriorated so much after picking up a bit before she went to join my mother that, out of desperation, she (my mother) felt like we should move forward on that front. She disagreed with me that we should requisition new doctors first.

E's decline in NM was of the joint pain / hair loss type, perhaps Prednisone or Depakote related. Perhaps not. Couldn't hardly walk, but no migraines. That happened after she got back home.

The short answer is drug-induced sleep, if she can get it. If she was labeled a junkie, she could get those 3-day sleeping pills they prescribe to heroin addicts that allow them to sleep through the bulk of withdrawals. She needs sleep more than anything else.

The larger issues of psychological makeup I've bleated on about enough need no further repeating, but somewhere between second-mortgaging responsibility to others, whether those in lab coats or, sadly, my confused mother, or the other extreme of my father actually believing he was going to live forever until roughly two years before he didn't (true story), there's that other path, the one my grandmother took in her long demise: like sheep down the abbatoir hall way, with ushers posing as medical personnel...you'd sooner see me at the Torrey Pines gliderport with crinkled-up DaVinci sketches, catching one last glimpse of that cool chunk of concrete by uber-architect (and pathetic father) Ku-bloius Khan...but I'm not sick....but, then again, E can't see the long, drawn out killing floor that I see her feet shuffling over, willingly...so what to do?

(Like I'm such a effin' barometer in peerless decision making with my own life...)

I wouldn't say that it's been all that holistic, and if it were forced the results would have been crystal clear by now, as therein lay only two endgames possible, and no middle ground between. I would rate my involvement on the tostada scale thus far at about a two and half, and with somewhat mediocre guacamole dripping off the sides...just marginally better than the previous year of bartending from afar and throwing money at problems when possible, along with sincere concern, empathy, criticism, support, etc., but little direct involvement...I've backed off from the glaringly obvious health concerns I've seen with my mother and sister several times for over a decade, and, tragedy that it is, it may be time to do that yet again. Which will only make them more depressed, particularly when I pull my son out as well...no winners here...we'll see if it comes to that...

A visit by ch'all tomorrow would be most lovingly received, I'm sure. Room 305.


September 3, 2007 10:11:45 AM PDT

I'm curious to hear what J's "take" is on the whole situation, including his reaction to your thoughts on your possibly stepping out of the bursting radius of E's implosion, and taking your son with you.

As unfair as it is for you to have been thrust into the role of semi-permanent care-giver; with its obvious restrictions on your own choices about future opportunities, it's a role which your mom could simply not cope with unaided.

I don't hear any hope of cessation of these episodes; only palliation of symptoms and pain control. I "get" that what you guys are faced with (and I say "you" and not "we" because you're in the trenches every day; I'm not), is a permanent disability requiring permanent care and, quite probably, social security disability retirement.

As for the attorneys, I have this nagging feeling that, no matter how just your cause or righteous your claim, any attorney willing to take your case on contingency (and how else could you proceed?), is probably not the one you'd win with. If you had lost her due to the providers malpractice, they'd already be six deep at your door.

My feelings that you should not risk losing her current medical care remain the same. If notified of lis pendens, they will go into defensive mode and not even prescribe an aspirin....

Whether or not you've been that peerless barometer (I liked that) isn't germane here. We all set our feet on the paths we choose, and I pretty much got away with soaring on those crumpled DaVinci sketches most of my life until the lesser known God, Ralph (he came after Prometheus) decided to strangle my parrot (it's an old USMC expression). E is aware, as all of us are, don't ever kid yourself about that, of shuffling toward the upraised knife of the schoichet; we just don't think it will be today, or even tomorrow that we must offer our necks to the blade.

You are right about the increased depression that would result from your leaving the scene. As unfair as it is to you, you're needed too much to leave.

I'll try to get over to 305 later....


September 3, 2007 5:12:02 PM PDT

Heya...I know you called me, about E's welfare (and not mine), but thanks for listening to my (could they be more biased?) suppositions por telefono on who did what and when...I usually reserve that level of animated discourse for defining the Bush Administration...and I had started such a lovely email too:

"Her veins are becoming less available, and twenty or thirty tries later, finally, a specialist was summoned. A little Chinese woman appeared, and with the steady hand one might develop working on downed airmen at the Hilton Extended Stay, she locked in and succeeded."

Seriously, E's psychological state is floating, and veering into waters I truly hope do not overtake her. The Percocet incident / trigger last night that started a very lively conversation between siblings was display enough of what's what: that E didn't see how she was sabotaging herself by not swallowing those tabs after telling the nurse she was in pain is bad enough; justifying it a few minutes later by saying she noticed how my mother's back has been bothering her for a few days and she was just...all bullshit, and you know where I'm going with this...that E chose to throw it out there last night that she's made some really poor decisions in the past, and why should I expect things to be so different, and didn't I realize that she feels some of her conduct hastened our father's death...and then, in an assertive and controlled manner, explain away why she's doing the dog-and-pony show with the nurses and doctors to get what she wants drug-wise...well, I'll agree that she should be allowed to make her decisions regarding her doctors, for now, but this is no path to recovery...in fact, it's a prison...

I think by anyone's fair assessment of her two doctors' plus and minus columns in evaluating their treatment thus far, for any good that might be measured, there is a fair amount of wretched as well. There would be no guarantees whatsoever by switching doctors save one: the option of allowing the current doctors to conduct themselves over the next three months like they have the previous three would be off the table. But this would also mean embracing the unknown, and I am alone in advocating this.

For whatever it's not worth, I realize that my rants about the doctors with whom she has been in contact, both before and at present, sound equally reactionary and uneducated at times. That's probably because they are, and I am. Even if I could show that Lisa's chances would be about the same, or better, had she just put a fresh sprig of cilantro under her pillow these past three months it wouldn't change the fact that these people got to where they are through years of study and commitment. It takes more than an afternoon with a cable modem and the Google, and I respect that. Perhaps that is why I feel that they, and by extension my sister if she decides that they are her best option, should be accountable if they are admittedly flying blind with this medical anomaly, and are hoping for the best by throwing drugs at it. Anyone can do that, though I'll concede that the doctors have better access to those drugs, and a bigger bullpen...

One thing that occurred to me after we hung up and I was collating avenues of thought was my agreement in total when you said that these people, specifically the doctors, can't think, as that creates an opportunity for malpractice. It's training, training, training, and I agree(d) with what you said, though something noteworthy did present itself later. If you'll indulge me for just a sec...("Permission granted, Lt. Chatterbox, but let's wrap this up, eh?")...While you and I could assemble 100 doctors out on the lawn and say "All right - I need you guys to line up in a circle," and probably not lose too many, asking those that have heard of hemiplegic migraine to step forward would result in little movement, if any. Lisa's doctors were no different. So, with my little Deduction for Dummies pamphlet in hand, I would submit that these doctors were confronted with the unknown, and, therefore, forced to think (this applies more to the neurologist; the other guy doesn't really count, as his specialty appears to be a tireless ability to shrug and say "I dunno"). The decision to go to 1000mg of steroids a day did not come out of playbook as far as I'm aware, particularly because the source material on this condition is roughly the size of a Dennys menu, and not as instructive. It was a conclusion reached, and perhaps the right one given the grim situation at the time, as the result of at least a nanosecond of independent thought. I'm glad that the guy tried, instead of walking away or saying it's something in Lisa's head that it isn't, but it's interesting to note that the same guy thought she could just cease (cold) the steroid usage the day she walked out of the hospital. After a couple of weeks' worth that would make Barry Bonds blanch. So there was some thought, but I suspect it was limited to "well, enough of this might do it" and no room left to speculate on what to do afterwards if you succeed in clearing the fountains at Caesar's, but miss the landing ramp altogether. Another pair of doctors may indeed be worse, and will certainly start out just as ignorant, but Lisa should probably rethink her definitions of assets and liabilities before these two putzes kill her.

I realize that for every Jonas Salk there is...well, there's the rest, isn't there? Independent thought isn't always encouraged (citizen)...and I do hope E doesn't "lose it" upstairs. J's take on all this is that she may have already...and it's unfair for our mother to be attached to such a cloud of negative energy, a large part self-induced. Of course this waits outside when the physical problems are what they currently are...

If I bow out, it will be to an extremely modest flat somewhere nearby in this vapid outpost where palliative bagels are lifelines keeping me distracted for the remainder of the school year that just got underway. Whether he deserves it most of the time, based on academic performance alone, is not all that relevant to me; my kid is a happy kid, proud to be in school, a senior, with girlfriend, car, 20 hrs a week at Vons, and stability. As you and I discussed the other morning, I had heard of such phenomena being possible, and am convinced no further empiricism is needed in this matter. He spent the early part of this Labor Day putting together a PowerPoint presentation on Victor Hugo, and is now going to friend's pool to jump in for a bit. So good for him. And I will be supportive and respectful of my mother and E's wishes to forge (or forage) ahead their way, as they have been very understanding in letting me drop my bags in the corner of the townehome for the past year with no questions asked. I'm sure I'll be by daily with cookware in various stages of use anyway; and perhaps that is the best course to show loved ones they are loved without being too overbearing. I certainly wouldn't feel victorious if my convictions, however right, created a vibe that causes E more eventual harm in it's non-harmony. That won't do.

-----------

I have spoken with my mother again today. The neurologist has stopped by, and is recommending 250mg of steroid twice a day, half of what she had before. I'm sure an improvement will be noticeable, and we will have to all pay attention to the rate at which it is removed once she is discharged. I am hopeful that E will be able to get some sleep if she feels things are turning around, though this may become more difficult with the steroids in her body. The Depakote is being discontinued with a taper; I am not sure that they have a replacement yet in mind.

I suspect by Wednesday things will be different, perhaps enough for visit...I'll continue to forward info as it's received...t'anks again...


September 4, 2007 12:14:03 AM PDT

Hey...just caught a little evening news stating that, apparently, it was 108 degrees in Escondido today. I know Del Mar isn't Escondido (let me count the ways...), but nonetheless felt it rude that I didn't invite you and the missus over for some mint juleps or something this evening...there is an AC unit sticking out of a living room wall here, the kind of arrangement at least one of my ex-wives would refer to as "country" (I'll let you guess which one), but it works in tandem with a couple of fans well enough...

Let's look toward a Wednesday hospital visit with E if you and the memsahib (and E) are up for it, but please don't hesitate if you both would like to stop by for a bit tomorrow anytime after your earlier engagement. Or anytime Wednesday. You both are most welcome to sit at my computer (the mac) and see if that's something you would find useful, or one desk over where I have a pc. Or just "chill" on the couch and try to correctly identify the genus of whichever mutated quadruped comes strolling by...

Seriously, please don't hesitate...


September 4, 2007 10:24:24 AM PDT

How very thoughtful...

C and I were asking each other just yesterday, how "Jewish" we wanted to be, while we were shuffling from fan to fan, mopping our clammy parts with wet washcloths, and asking ourselves "what was my terrible crime, that my _________ (insert gender of applicable neglectful offspring) hasn't called to ask how I'm tolerating this oppressive heat?"

And if one of them should call? One of us would ask them to hold the phone while we try to revive the other, overcome by heat exhaustion, but, did either of them call??? NOOOOOOOOOOOOOOOOOO (rising inflection in best John Belushi voice).

Thankfully, it hasn't been anything near 108 here, but probably close to 90 with high humidity,and just dead air.

One of your ex-wives? I wasn't aware that you actually had any of those..As for which of them would consider a thru-wall A/C something less than BCBG (the original French; not the brand name), would that have been a lanky, luscious, Lexus-lovin' Las Vegas lass whose face and form could have launched a thousand ships and burned to topless towers of Ilium?

We'll try to visit with E tomorrow, if she's up for it, and, after our appointments today, we'll probably let traffic thin out while we have a bite somewhere and then head home. We do have a light bulb out in the only low-wattage lamp we can use in this heat, but that's okay; we don't want to trouble our children; we'll just sit in the dark........:) (how'm I doin'?)


September 04, 2007 8:09 PM

Oh that's Jewcy enough, Rebbe G-Baum; any more coming through my modem and I'll have to get my shabbas goy to report in a few days early and do some giggling for me...

("...I should crack a rib, and in this heat?")

I have spoken with my mother a couple of times today, and it would probably be best to not visit just yet. Though please do give a jingle if you feel like it: 858.613.4000, same room (I don't think there's a direct line). Both of E's doctors have come by: she is on one 80mg of Verapamil, about to go to two, the steroid I mentioned yesterday, some valium to get her to rest, Depakote once a day, and some form of painkiller TBD; the doctors seemed to be in some sort of disagreement over what kind and how much. Her primary has ordered a reduction (perhaps it has dawned on him that four months have gone by with hefty doses of opiates in Lisa's body daily - I honestly don't know - but if they're thinking about withdrawals, let alone the pain she is experiencing otherwise, it wasn't brought out in the open today), and the neurologist would like to switch her from the morphine back to the Oxycontin tabs. I've asked my mother to consider mentioning that the levels of Oxy consumed just before the trip to the ER were pretty big, and not helping. Also that, aside from the Valium which has been just so-so, E needs some deep sleep - she is not getting any, and everyday that goes by Lisa is disassociating herself from reality just from this alone (this really concerns me, as it would appear stress and fatigue are the silent vultures circling overhead), exacerbating her confusion, frustration, etc., and (obviously) limiting her body's ability to heal.

I did speak with E briefly, and she was OK to talk for a bit, but it becomes overwhelming pretty quick. That's not to say she wouldn't love to hear your voice. She would.

-----------

Actually never married either of the two shiksanas with whom I shared the occasional toothbrush and address label (I would have, mind you, but Anton LaVey was always booked too far in advance...). The lanky, luscious Loxanne (New Kowloon, not Nova Scotia, transliteration) had me at huh-ro, as did I her (or at least at huh-ro huh-ro). We were engaged, though that stuff mattered little to me, other than her happiness with the ring and all. Unfortunately, her parents neglected to tell me about the John Carpenter movie they had so deftly planted betwixt her ears, and I couldn't very well expect Kurt Russell to drop whatever he's doing everytime her head began to resemble that unfortunate Antarctic malamute...

On that note...


September 4, 2007 10:53:23 PM PDT

If anything drove me out of the practice of Judaism, it was the hypocritically laughable concept that, while a Jew was forbidden from turning on a lamp on the sabbath, it was quite permissible for him to hire a goy to do it for him...After all, God doesn't care if the goyim keep the sabbath...

But you need not send your shabbas goy over to change our light bulb. I never knew that computering by candlelight was so romantic...

We'll hold off on the hospital visit until we hear from you that it's do-able.

I don't think it's possible to get deep sleep in a hospital environment, let alone adequate rest.

Antarctic malemutes? I don't think Shackleton, et al, left any of those uneaten....

I only met Loxanne once, and certainly know the feeling of that great line from Jerry McGuire, but I also had the impression that the occasional Bulgari bauble floating in her morning cream of wheat would have been a fairly regular requirement, no?

It's funny that, though many can relate to a moment when "she had me at hello", I can also pinpoint the exact moments in my (former) relationships when, "we've already said goodbye; all that remains is to divide the books and the music", was evident in neon letters a foot high.


September 05, 2007 1:24 AM

Yeah...silly...one of my faves is the dutiful and devout hombre waking up each morning with payot a-swinging and a heartfelt "Thanks, R_lph, for not letting me be born a woman" sliding past his lips in prayer...a bit cheeky, wouldn't you say?...it's not just Muslim scholars left out in the sun too long...

(Picturing what 1.2 billion Jews would look like roaming the planet as I'm writing that...Egad!...yes, I know; tongue has been bitten...)

Remember that Sigourney Weaver-approved scene in The Thing where the doggie's head separates toward all four cardinal points? (Well, technically two N's, an E and a W...) "Loxanne" was a very passionate person, and a little cuckoo up top. We didn't need much material stuff to be happy, when we were happy, but I happily left (for the last time) those neon letters to which you refer in the rearview of a '77 Camaro with a couple of felines and a few music books in tow; she wanted, and earned, the condo, the college degree, the Lexus and the ability to successfully work from home, though we started without so much as a bedframe...ah well, behind every Panamanian booty is a...

There were a few instances, during that time, where stranded with Shackleton and gnawing on a fur-laden tendon would have seemed Valhallic enough recompense...but I considered her family...

Of course, Squeaky Fromme had a family...


September 5, 2007 10:13:57 AM PDT

And another boot in the butt out the door of tfillin wrapping, etc., was the concept of gender separation at orthodox synagogues, lest the devout be distracted by size 22 booty wrapped all too fetchingly in black bombazine. I think it's called a "mechitzah" and being relegated to the distaff side of one is tantamount (mounting one's tanta?) to being sat below the salt.

I once asked an (observant) Jewess if opening her refrigerator was violating the sabbath as it would cause the troll inside to do work in turning on the light. She replied, quite seriously, that when, at erev shabbat, she put her pot of cholent on its' low flame, there to simmer until sundown on Saturday, that she then opened the fridge and unscrewed the bulb.....

I was going to ask then, if just the act of opening the door, light or no light, was breaking shabbat, because the rise in temperature from the outflow of chilled air would then cause the compressor to start in an action-reaction event, but she didn't want to ask her learned rebbe, probably not wanting to hear the answer...Surely the Talmud addresses that issue....

I suppose the craziness could even make one shut down the A/C compressor on shabbat lest opening one's door in summer to walk the fourteen miles to schul did the same thing.

Surely, it's only a short leap from there to stoning adulterers and homosexuals...(or even those who forget to unscrew the fridge bulb).

I think Squeaky Fromme ate her family....

The siren call of the well-turned booty that causes the little captain to lead the big captain to willingly put vulnerable parts into the pickle slicer? But (no pun intended) for that, sobrino mio, there'd be a bounty on 'em....

P.S. I liked that R_alph thingie...nice touch.

How is E today?


September 06, 2007 10:55 AM

Just spoke with my mother, and E did get some rest last night, and her facial droop / other like symptoms were a little better than before they went to sleep. It meant that E slept through a dose of pain medication, thereby waking up uncomfortable, with some symptoms returning, but it's a start. They're both trying to grab a nap before the neurologist arrives around noon.

Not a lot, but something...


Thursday, September 06, 2007 3:33 PM

Latest from Reuters: The neurologist came in, saw E and said, "You need sleep." She's sleeping.


September 6, 2007 3:47:04 PM PDT

You need sleep? Not exactly the preamble to "I'd like to thank the members of the Nobel Academy", eh?

But, probably the most accurate diagnosis he'll have made today...

Maybe a visit tomorrow?


September 06, 2007 10:49 PM

Yep..."you need sleep"...how insightful...

I'll mention a visit tomorrow when I stop by...spoke with my mother around nine this evening, and more rest was obtained, and expected to be obtained, on both sides of that phone call.

By all accounts, a better day than yesterday...


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