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.

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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...


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