The Maze

July, 1996
So, here I am in the Berkshires, singing Russian Opera Choruses (among them the Coronation Scene from Boris Godunov, the very scene that I dreamed during my cardiac arrest 16 years ago--remember that the coronary arteries are so named because they sit atop the heart like a crown--ah, Siggie, you weren''t completely full of shit). It's the best week of the year, as always, even though my honey is in New York, with a gig at the Jewish Museum. She’ll be up Friday for the concert. She is my biggest fan (next to myself, she would say).

So, I am biking this morning at 6 AM.The temperature is 60. I'm on a dirt road crossing a huge valley between two mountain ranges. They talk about the light of Provence, the light of Taos.The same light shines here. Clear and gold. The open field, half a mile wide, is decorated by Monet with rolled up hay. Walking across the valley, perpendicular to the road are Bambi, his mother, and his father, all in a row. They spot me, and begin to run. They don't run, really, they lope, bounding silently--la famille Barishnikoff. I charge ahead at full speed, hoping for a road kill (which undoubtedly would be me). They pass ahead of me. Then back for a shower, a huge breakfast, and singing with Joe Colaneri, director of the New York City Opera.

So that I can continue this sort of thing for another few decades, I am going to have heart surgery on July 22 in St. Louis.

My atrial fib is coming daily now. We’re out of poisons. I had the cerebral “episode” a month ago. My cardiologists in Providence, in Boston, and on the web all agree that I am a very good candidate for a maze procedure. I've read about it on the web extensively, and it sounds rather like Tylenol--safe and effective. Open heart surgery still has an imposing ring to it, but it's bread and butter stuff today. The surgeon makes strategically based incisions in your left atrium which are based on electrophysiologic studies, and creates a maze, a smooth pathway for the electrical impulse that paces your heart to travel from the top of the atrium to the junction of the atrium and ventricle. Then he sews up the incisions. There is no artificial pacemaker. Your own internal mechanisms work fine. I spend the rest of the day after rehearsal making arrangements for a maze procedure in St. Louis. I speak with the surgeon, Dr. James L. Cox. He sounds like H. Ross Perot; and he sounds like a real mensch. I speak with 4 doctors on whom he has done the procedure. They only have good things to say about their surgery and about Cox. Totally successful.

So, Carol and I are going to St. Louis on Monday, July 22. Marjorie will join us there. I’ll have a cardiac catheterization the following day, and surgery on Wednesday the 24th. If the catheterization shows blockage with a probable need for a bypass in the next few years ahead, they’ll do a CABG (bypass), as well (“As long as we’re in there soldering the radiator, we’ll replace the water pump, too, and save you labor costs in the future”).

I am very much looking forward to this. It will mean an end to the atrial fib, the end to a risk of stroke, and a chance to record more stories and adventures.

We are taking the powerbook with us to St. Louis, along with some good wine, so you can send e-mail to the usual addresses, and we all pick it up.

And now, for your patience in reading through all this, three West Virginia jokes:

1. A question before the West Virginia Supreme Court: If a man and a woman get divorced...do they remain brother and sister?

2. Why did O.J. Simpson try to change the venue of his trial to West Virginia? Because everyone there has the same DNA.

3. How do you define a “virgin” in West Virginia? A girl who can run faster than her uncle.

Much love to you all.

From: Carol

Date: July 16

Subject: Michael's surgery

The Great Man, Dr. James Cox, The Amazing Randi, developer of the Maze Procedure, is lecturing on Wed. Therefore the operation will be held on Tuesday. (We arrive in St. Louis on Sunday; catheterization on Monday.)

I see this as truly auspicious. Jewish folklore has it that any venture begun on Tuesday is singularly blessed. In describing the Creation, God pronounces it good twice, unlike any other day of the week.

For those of you on Michael's list, I apologize for the duplication of information; I also want you to note how the two of us choose to frame our message. Michael, with a truly tasteless joke; Carol with some words of Torah. Certain things never change.

From: Farklempt

Date: July 21

Subject: This Bud's For You

The Eagle has landed. We (Michael, Marjorie, Carol) are on-line from the cardiothoracic surgery unit at Barnes. I got a pass for lunch today, so we went to an outdoor cafe nearby and had a nice lunch al fresco, with a slightly bubbly chenin blanc. The hotel room within the hotel is actually rather luxurious.

Phone number (direct) to Carol and Marjorie's room in hotel: (314) 362-5504. For your eyes and ears only. This number will remain constant for the next week or so. My phone number currently is (314) 362-6214. This number may change from day to day.

We saw the arch. Time to go home.

Michael

--OI! I'M ALL FARKLEMPT!!

July, 1996
Had my cath this morning. Went very smoothly. No cut-downs, just a puncture into the right femoral artery, which I didn't feel because of some Demerol and Valium i.v. Great stuff! No wonder the patients all want it.

The cath showed a complete blockage of the left anterior descending coronary artery (which we knew about, and which caused the M.I. in 1980). However, there were still some open vessels related to it, and Cox feels it is worth bypassing, since it only takes him 10 minutes to do a bypass once he is in there. The other branch of the left coronary artery, the circumflex, has two blockages in it, one 40% and one 50%. If he were not already in there, he would not fix them, since they are not that serious. However, he will be there, and he will bypass those blockages with a vein from the leg. In addition, there is a healed scarred area at the apex of the heart, caused by the 1980 M.I. This, also, we knew about from previous echocardiograms. If he finds that this has enough give to it when he sees it, enough to call it an aneurysm, he will sew it up with a couple of stitches, and it will be good as new. And, of course, he will do the maze.

I have confidence in his skill and in his clear thinking and in his essential goodness, so I still am looking forward to tomorrow with a hopeful and eager outlook. I know there will be a distressing post-op period for a few days, with difficulty peeing, chest pain, etc., but morphine and TLC help you forget that in a short time.

I go up at 6:15 AM tomorrow, and will be operated at 7:30 AM. I met the anesthesiologist and his crew (all Greeks) and they are very nice and smart. I'll be in in the ICU for a few days and then to a regular bed.

No further messages for a couple of days, but my thoughts are with you and with your good wishes and prayers.

Love,

Michael

Date: Mon, 22 Jul 1996 17:54:32 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Update

Catheterization went fine. Not clear as to what surgical interventions will follow: there's a modest amount of blockage in two arteries; a small aneurysm. Cox will decide this evening after looking over the cath results. Surgery scheduled for 7 A.M. Good. They shouldn't be tired from standing on their feet all day.

Michael, Marjorie & Carol are cranky. Michael cause he can't pee; Carol & Marjorie because we're having trouble with our modems. The only difference is that we women don't have yellow eyeballs.

Our spirits are good. People in the midwest are so damn nice--I had forgotten how nice. Michael is by far the healthiest person on the floor--the others are twenty years older. Geezers.

Thanks for all your good wishes.

Date: Tue, 23 Jul 1996 18:06:44 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: The view from the o.r.

Sorry for the mass mailing, folks. I do appreciate all your messages and the affection for all of us. In a word, it's been a long day. It began at 5:30 A.M> when Margie & I accompanied Michael into the O.R., or at least until its portals. The surgery was much more complicated than any of us, including Cox, expected. Leave it to Michael to go for the high drama. I'll cut to the chase: He left the OR at 4:30 P.M. Right now he's resting comfortably in the ICU (Read: he's totally gorked out--but heart is stable.) The team did the Maze procedure, did the two bypasses, repaired a leaky mitral valve, and opted to leave the aneurysm alone as it was tiny. All the trauma created instability--all sorts of arrhythmias, flutters, and the dreaded tachycardia. (This latter is my gesture to you physicians.) Balloon inserted, on a lidocaine drip, all's quiet on the Midwestern front. Battery running out; more forthcoming. We'll visit again later. Keep those prayers coming.

Love, Carol

To: "Andrew M. Ingall" <ami6438@is.nyu.edu>
From: snarly <marjorie@cyborganic.net>
Subject: adventures in the cardiothoracic ward

we did get to see dad at around 8:30pm, and that was prolly a bad idea for us--not him, he was still totally out of it. it was really hard, he is totally drugged to the gills and flailing around in a scary way-they'll start to bring him out of it at about 3am. he's in totally irregular rhythm, which is standard after this much trauma to the heart (in spite of all the anti-arrhythmia drugs he's on). but he's had much more arrhythmia--and general complications--than most. (he is SO COMPETITIVE! ;) !

i guess i'm glad no one is lying to us and saying he's out of the woods. he has one nurse all to himself in the cardio ICU. her name is mary and she is excellent. very warm, very competent. the day nurse seems great too. all the teeny doctors (the residents, interns, fellows--anyone under 35, basically) are moronic and i do not ask them any questions. one just started on july 1 and looks like a deer in the headlights. he is named--oy--robert grubb III, md, and he stammers in fear every time i address him directly ("HEY, DOCTOR GRUBB!") which if i were feeling myself would be such a prime opportunity to torture the little guy. you'll know when i start getting more confident that dad will get better because i will share tales of fucking with doctor grubb.

right now i'm concentrating on making mom laugh. i taught her to call the bitchy lady hospital staffers "heffas." she so enjoys expanding her vocabulary.

found a great vintage store. little 40s rayon shirdresses and 50s cotton pique sundresses. when dad gets better i'll shop my wee brains out.

i un'ccd my dad's friends and sibs and sibs-in-law from this message-Too Much Information!

--m

Date: Wed, 24 Jul 1996 10:51:55 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Today's report

Marjorie and I visited Michael this morning, having returned from foraging for the best bagels in St. Louis. (Even in the face of the life-and-death agon (That's Greek folks; I didn't miss a y), there are certain constants.) First of all, he looks much better. He's less puffy (although his fingers still look like a bunch of bananas). He was alert, albeit totally exhausted. He greeted us in typical Michael fashion, beckoning us in a whisper to come closer to his hospital bed. Then, newly weaned from the respirator, he begins to sing Gremin's aria from "Eugene Onegin." No problem with his brain or ego.

He is thoroughly drained. When I gave him my compact so he could use the mirror to check out the way he looked, he said it weighed a ton. We spent less than five minutes with him, because he just wanted to sleep. He seems to take a perverse pride in giving the Malokh ha-Movess (The Angel of Death for you uninitiated) the slip, noting that he has a balloon pump in 1996 for the same reasons that he had one in 1980.

My friend Sue Tauer notes how I've changed regarding technology. (I was the one who thought computers were ridiculous in 1991; that I just loved my yellow legal pad.) Seeing Michael amid all the machines, using this machine to communicate with all of you--From the morning service: " Zikhru niflotav asher asah--Remember all the wonders that God has done...." And me coming from a long line of Litvak rationalists!

We're not out of the woods yet, but today sure beats yesterday.

Love to you all--Carol

Date: Wed, 24 Jul 1996 10:05:41 -0700
To: marjorie@cyborganic.com, "CAROL K.INGALL" <caingall@JTSA.EDU>
From: Jonathan Steuer <jonathan@cyborganic.com>
Subject: Re: Today's report

i'm very glad to hear that he is at least awake enough to be difficult thanks for the report.

i will be out of the office for the next few hours, but you can try me onmy cellular or page me and leave a text message) if there is an update. i should be back by around 2:00 PDT.

love,

-j-

Date: Wed, 24 Jul 1996 19:25:00 -0700
From: Douglas Cruickshank <dscnet@ix.netcom.com>
To: Farklempt@brown.edu, unsassy@phantom.com, caingall@JTSA.EDU
Subject: Good tasteless is timeless.

Gone since yesterday but Cathy's been getting your e-mails and keeping me informed. Thanks, Carol and Marjorie, for being so diligent about keeping in touch---a heroic, much appreciated effort.

Driving home today I was trying to figure out what was the best thing I could do for Michael right now. Here it is:

Q: What did Ronald Reagan say when he saw O.J.?
A: Now that the trial's over, why don't you and Nicole come by for dinner?

As ever, Doug

Date: Wed, 24 Jul 1996 15:27:02 -0400
From: Arthur_Landy <Arthur_Landy@brown.edu>
To: caingall@JTSA.EDU

Dear Carol,

After Evelyn's, not sufficiently reassuring news yesterday we were very happy to receive your two e-mails today (Tues PM and Wed AM). You are probably doing more (at least as much) for those of us on your list as you are for Michael, at this, mostly unconsious, stage of his recovery.

Marjorie, thank you for taking care of your mother so that she can take careof all of us....and of course Michael, when he returns from his visit with the Almighty.

We are thinking of you constantly.

Love,

Eva and Art

To: ami6438@is.nyu.edu
From: snarly <marjorie@cyborganic.net>
Subject: Today's report

again, here's mom's report. update from me at 8pm: dad is breathing on his own but on a pacemaker, which is supposed to be temporary. he has been drifting in and out. he is very very scared, which is hard to watch, particularly after all his bravado pre-surgery (and general arrogance and confidence in life in general). he is obsessed with the terrifying thought of leaving the ICU. but as mom said, today is MUCH better than yesterday.

what she said. thank you all so much for your words of support and comfort. i get misty just thinking about it.

--m

Date: Thu, 25 Jul 1996 18:14:27 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Today's bulletin

Today Marjorie and I walked to the magnificent St. Louis Cathedral. (As my husband is wont to say, "Couldn't hurt.") We were able to do so because Michael spends most of the time sleeping. He is still so exhausted that he can barely carry on a conversation. They have removed two of the finger-sized tubes in his chest; his heart is still being assisted by a balloon-pump and an external pacemaker. They were threatening to take the balloon out today, making Michael very nervous, because he didn't feel ready. (He's having trouble breathing--the staff says it's all the trauma, not from heart-lung stuff.) Any way, they're not pulling it out just yet, which means Michael stays on the ICU. This is good news, as far as we're concerned. The ward means a nursing ratio of 1 to 5; here in the ICU, he's got a cracker-jack nurse all to himself.

Everyone says "The numbers are good" (Whatever the hell that means); we can see that Michael's color is better and he is alert for longer periods of time. What is troubling for Marjorie & me is that Michael doesn't seem to believe he's making progress. To see Mr. Bravado so diminished--in every sense--is disturbing. But: The numbers are good, so I assume the rest will follow. Day by day.

Thanks for all the messages, folks!

To: ami6438@is.nyu.edu
From: snarly <marjorie@cyborganic.net>
Subject: Today's bulletin

hi friends...

update on the update: the day ended much better than it began (no offense to st louis cathedral, which was really something else--a byzantine extravaganza!!). we are feeling more optimistic now than when mom wrote the message above. dad was really act!ing like a chalerya (translation for the goyim--nervous wreck, crazily neurotic. derivation: "person with cholera"), insisting he couldn't breathe (even though the numbers show he has 100% oxygenation in his system) and kvetching every moment he was conscious. he asked mary the wonderful nurse if he had a collapsed lung. (!?) no matter what anyone told him he thought we were lying, dismissing his concerns, not listening, etc. but after Zorba the Anesthesiologist, who we all like and trust, said he was having trouble breathing because he was flat on his back and he had to stay flat as long as he had the balloon in, cumulatively some of the stuff must have gotten thru to him, because the balloon that he was freaking out about having removed all afternoon, he wanted OUT by early evening. and the Big Doc wanted it taken out. so mom and i went out to get food (mom was totally frazzled and spazzing by then, in part because mary the wonderful nurse said he was borderline to take out the balloon, and her choice would be to leave it in) while they took out the balloon. we walked to the veggie restaurant and got tofu and mushroom thingies. i also bought an indian wall hanging at a crafts store and two 50s dresses--one white with black and yellow polka dots and one rose-covered chiffon number--at a vintage clothing store. when under stress, i shop. anyway, we got back to the hospital, with mom practically hyperventilating (dad's depression is very hard on her) and there he was beaming, saying NOW he could breathe. which makes no sense medically (he still wasn't allowed to sit up yet, and the balloon itself doesn't affect breathing), but there you go.

they also gave him xanax (for anxiety, which he insists he wasn't feeling--um, ok) and percodan (for pain, which he said he didn't have--um, ok) and htey seemed to help a lot.

he has an evil wench night nurse tonite. competent but a bitch on wheels. i'll share my stories of willful heffa-nurse clashing another time.

thanks for all yr support...

--m

From: Douglas Cruickshank <dscnet@ix.netcom.com>
To: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: 25 July, 5:30 in the afternoon

Dear Carol,

Though Michael is superhuman if anyone is, I would be very surprised if he wasn't expressing some discouragement at this point. Unfortunately, I think that's normal and that's going to be part of it. But, as you know better than any of us, no one is better equipped to overcome that than Michael. He is one of the world's great and bouyant souls, and while that powerhouse of a brain of his will get a serious work out, there's no question that he'll prevail. He's got enormous willpower. The bravado will kick in, but sure he's going to have some doubts. You know Michael--after this long in bed he's ready to bike it back to Providence while singing selections from all his favorite operas.

I think it's reasonable to expect that Michael's progress may be more gradual than any of us would like (in fact progressing slowly is probably desirable in the long term). However, from all indications he's going forward at a rate that the doctors are comfortable with. That they were ready to remove the balloon is a good sign---but I'm glad they honored Michael's wishes. I think you're all doing astonishingly well. I know it must be very tough for you and Marjorie and I'm glad you're going to museums, etc. By all means spoil yourselves. You're probably more tired than you realize.

I know, too, that you know all of the above, but I figure it doesn't hurt to hear it from another.

I'll save your message for Cathy to read when she gets home. My best as always to you and Marjorie, and give Michael a big wet kiss for me. Tell him it's from Jerry Lewis's Lhasa Apso.

Onward!

Love, Doug

Date: Fri, 26 Jul 1996 12:16:08 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Update--Friday, A.M>

I qualify because everything changes so rapidly. They removed the balloon pump last night, having first weaned Michael off one of the heart-strengthening drugs (Inocor, for you docs out there.) Michael was ready (psychologically) for the balloon to be pulled, because it meant more mobility and the possibility that it would be easier for him to breathe. This also meant he could continue to stay on the ICU because there was yet another drug to wean him from--dobutamine. This is good news. I have to keep reminding myself that progress isn't linear. Today they're putting him back on the Inocor because his ventricle isn't pumping as strongly as they'd like.

He's still spending huge amounts of time sleeping; he is totally zonked. He has no sense of time--there are no markers: no daylight vs. night, nothing to do but lie there and have dozens of people poking and prodding him. He looks like a spaceman from the Buck Rogers movies of my youth--there's a tube coming from every orifice and some new ones that were created for the occasion.

I'll really miss Marjorie despite her passion for clothing from an era I hated living through and her paternally-derived irreverence. I show her a psalm that refers to God as a healer of broken hearts and she tells me I sound like a character on the X-files.

Keep rooting for us; it's still a long haul.

Love, Carol

From: Dr. Kevin Ryan <kryan@bu.edu>
To: Susan Tauer <adminpol@acs.bu.edu>, cstutz@eve.assumption.edu,
nlerner@acs.bu.edu, caingall@JTSA.EDU
Subject: Re: Today's report

Everybody I know is praying for Michael. Tell him the faith of a lot of Catholics are in the balance here! It's a little bigger than just Michael.

Sue T. was offerred the job at Assumption and today she is Rivier. It would be great if she and Cathy were working together. Everyone there thinks thejob will turn into something permanent soon.

tell Margie to keep writing. Hihlary is coming up on the outside. And shehas provided us with a GRANDCHILD.

Love

Kevin

Date: Fri, 26 Jul 1996 18:18:02 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Update, Part II
MIME-version: 1.0

Although going back to the heart-goosing drug was a setback, Michael looks much better. His voice is stronger, his color is better, and he's more with it--taking more interest in the nuances of his treatment. The surgeons have agreed to stop trying to push him out the door (in their minds this is progress), and wait a bit for him to regain some more strength. The nurses assure us that it takes a while for the heart to heal and regain its elasticity. He's resting comfortably and the shortness of breath which was not only annoying him but scaring him as well, is gone. I have no idea how long he'll be in the ICU; one of the surgeons said 24-48 hours; one of the nurses said it might take as much as a week. Truth be told, even though the surgeons see a stay in the ICU as a low level on the healing scale, I'm just as happy to have him there where there's a nurse hovering constantly. (Michael has always been blessed by being able to sleep anywhere and under any circumstances.)

Have a nice weekend, folks!

To: caingall@jtsa.edu
From: snarly <marjorie@cyborganic.net>
Subject: Re: Today's bulletin
Cc:
Bcc:
X-Attachments:

from my editor at holt...

Date: Fri, 26 Jul 1996 23:08:43 GMT
To: snarly <marjorie@cyborganic.net>
Subject: Re: Today's bulletin

m & family --

great to hear good news! it may not be understandable, but whatever makes your dad happy is a good thing.

i think you are going to have a whole new wardrobe from this trauma. not such a bad result: a healthier father and some cute little numbers. i spoke to tracy and she sends her love and good wishes.

so do i -- love and good wishes.

be strong, girlfriend.

To: ami6438@is.nyu.edu
From: snarly <marjorie@cyborganic.net>
Subject: todays news

ok, again an update on mom's update (below). dad's color is much better and his voice is stronger. still zonked almost all the time, but more alert when he *is* awake. today he woke up and demanded sorbet, which is a good sign (we choose not to think that asking for sorbet in a hospital is a sign of delusional thinking. we choose to see it as OPTIMISM.)

my flight is at 6:35am, and with these security precautions, well, i gotta get up pretty early--me and mom couldn't figure out how to set alarm on dad's monster nerd wristwatch, so he did it. good to see that he could focus for five minutes straight, had the fine motor skillz, etc.

no shopping today. sorry. i have failed you. i'll be back in SF and napping tomorrow afternoon.

To: ami6438@is.nyu.edu
From: snarly <marjorie@cyborganic.net>
Subject: dad update, 7/27/96

hi all--i am doing email duty for both mom's and my lists today.

today was really bad. at around 4am, we were awakened by a call from sheila the night nurse saying that dad had gone into ventricular tachycardia, a very bad arrhythmia, and wanted us to come down. he had converted to regular sinus rhythm by himself, no zapping necessary and didn't look too terrible, but obviously this was a big setback. he was mostly out of it, but he did ask me to stay and of course i will, at least for another couple of days. the docs didn't know why it happened and spent much of the day futzing with the different medications, while dad slept. mom and i lurked until chris the wonderful day nurse forced us out the door with her own beeper, saying dad just needed to sleep and she'd beep us if we needed to come back. so we got dad an irish linen shirt for only $20 on sale from $60 at banana republic at the union station mall (some of you will appreciate this information more than others). in any case, we thought it was an important gesture of confidence in his healing powers. when we returned, dad was totally awake, lively, good color, making jokes, sitting up, hungry. loved his shirt. we and some of the staff watched the olympics in his room and mom and i were totally baffled and delighted by how dad had totally turned around in just a few hours. then, suddenly, he complained that he was feeling nauseated and short-of-breath, and the monitor showed that he wasn't really getting enough oxygen in his blood, and much activity ensued and we were ushered out of the room.

after a scary hour in the waiting room we learned that dad needs a) better oxygen levels in his blood and b) better control of the ventricular arrhythmias that are still very scary. all the different medications he's on do not get along well together,so the challenge for now is finding the right mix while he gets stronger.

we've taken several big steps backward. he is back on the ventilator. he is heavily sedated. and they may need to put the balloon back in (they put in a little preparatory tube to make that not too traumatic). BUT he is resting comfortably and we really trust dr kevin murray, the surgeon in charge of dad's day-to-day care. he is very smart and humane and takes all our concerns seriously. and he smells good.

so keep praying for us and we hope we'll have some better news tomorrow night. and dad will look great in his new shirt.

love to you all,

--m

To: wnickel@worldbank.org, LCHarris@aol.com
From: snarly <marjorie@cyborganic.net>
Subject: dad update, 7/27/96
Cc: caingall@jtsa.edu
Bcc:
X-Attachments:

hi folks--you are both getting this message because i ran your names together (no comma) in the message i sent last nite so yours bounced. (nice sentence structure.) yesterday, when i wrote this, things looked very dire. today the situation seems brighter, even tho dad's condition hasn't changed at all. at least he's gaining strength with the machines doing so much of the work, and dr cox has a theory on why dad's condition plummeted. he thinks dad has a septic infection, which can be treated with antibiotics. and he thinks the heart is pumping badly merely as an aftereffect of surgery, and if we can treat the infection and give the heart time to heal, things will be okay. BUT we are trying not to get our hopes up, since a) if it is sepsis, it's really serious and debilitating, b) the ventricular tachycardia is still a huge threat, and dad did have another run of it this AM, c) AND a nurse swore she was sure it wasn't a septic infection since he doesn't have an elevated white count, fever, cloudy urine, etc. we cling to the hope that dr cox will be proved right on all counts.

--m

To: rfaux@usa1.com
From: snarly <marjorie@cyborganic.net>
Subject: Re: I think I know that shirt!
Cc: caingall@jtsa.edu
Bcc:
X-Attachments:

>Irish linen?
>
>Is the color "oatmeal?"
>
>I think I know that shirt!
>
>Russ
>
>
>Actually, your news helps keep it all from submerging into some sort of long distance anxiety murk. Thanks.

THAT'S THE SHIRT!!!!!

Date: Sun, 28 Jul 1996 21:23:39 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: On the roller coaster
To: "Carol's list"

We are guardedly optimistic now, at 8:10 P.M. (If you noticed that earlier I was qualifying by am/pm, now, a week into this adventure, I realize I have to qualify by the hour.) Michael is now stable, both electrically and oxygen-ly, and has been so for more than 12 hours. He is back to an endotracheal tube connected to a ventilator to help him breathe and a balloon pump in his aorta to help his heart pump. He's on more medications than I can possibly name: heart strengtheners, pain killers,muscle relaxants--a whole armamentarium. (I've always wanted to use that word.) The nurses and the doctors disagree (So what's new?) on the breathing/oxygen problems. The nurses: he's just exhausted and the surgeons (read: cowboys) were pushing too hard.The doctors, or at least the Wizard Doc, Cox: sepsis. His view is that there is some bacterial infection which explains the problems with the peripheral vessels, the drop in the blood pressure, and the precipitous decline in oxygen level. They've taken cultures (I bet on urinary tract) and are treating with a broad spectrum antibiotic until they can pinpoint the source of the infection. The nurses say this isn't borne out by their clinical signs...Bottom line, it doesn't really matter. He'll rest and we hope make progress, both with oxygenation and the electrical issues. Cox thinks that the tachycardia is a by-product of by-pass surgery, temporary spasms which constrict the vein they used for the graft. (BTW, the nurses agree on this one.)

We understand cognitive dissonance perfectly: looking at Michael,
immobile, not hearing, not seeing, not responding (he's that gorked out on drugs), but in spite of all that, feeling that things are better.

Love to you all--

Carol

P.S. The week with Marjorie just corroborates what I've always known: She's a 10!!

To: ami6438@is.nyu.edu
From: snarly <marjorie@cyborganic.net>
Subject: On the roller coaster

ok...even tho we probably shouldn't be, mom and i are feeling more upbeat. last nite was awful--chris the wonderful nurse said she could barely sleep and was obsessed with what the hell made dad go, and i quote "totally down the toilet" yesterday. but he was stable all day and when the Great Man sat down with us for 45 minutes and seemed so reassuring and blamed a septic infection...well, we were SO optimistic. until the nurses told us he has NO SIGNS of sepsis, and mary the pregnant one we adore as much as chris said she would "bet her unborn baby" that it wasn't sepsis...well, if it isn't sepsis we have no other guesses. and i'm worried that every time they try to wean him off some of the drugs/machines he seems to lose some ground. but everyone agrees that progress is going to be slow, and everyone agrees (docs and nurses) that they WILL take it slow, and everyone said i should go home and so i will. eeeeek. i'll come back if need be.

thanks again, everyone. people in san francisco: BUY ME DRINKS.

--m

From: RuthHP@aol.com
Date: Sun, 28 Jul 1996 22:26:55 -0400
To: caingall@jtsa.edu
cc: marjorie@cyborganic.net (snarly)
Subject: Re: On the roller coaster

Dear Carol,

Just as I typed this, you called. It was so good to hear your voice. I hope Michael is resting comfortably, and that his gurus are piecing together the jigsaw puzzle. I also hope that you and Marjorie are able to get a little rest too. You know, I'd come out to St. Louis in a heartbeat (how's that for imagery?) if you just say the word.

Well, thanks again for the call. I'll check in with the next E-mail.

Much love, from Larry too,

Duffy

From: "Ada Beth Cutler" <CUTLERA@saturn.montclair.edu>
Subject: RE: dad update, 7/27/96
To: "snarly" <marjorie@cyborganic.net>

Just logged on to see if there were any updates from you two over the week-end- it sounds like all three of you have been through the mill these past two days. I hope today has been a better day. I'm glad you are still there Margie with your mom. We send prayers and hugs to you all. Hopefully the next update will have more boring news-
Love-
Ada Beth

Date: Mon, 29 Jul 1996 08:11:31 -0700 (PDT)
To: snarly <marjorie@cyborganic.net>
From: nwdave@xanadu.cyborganic.net (nwdave)
Subject: Re: dad update, 7/27/96

Dear Marjorie and Carol,

Just rushed off of the B train all sweaty and annoyed that I was going to have to pay ANOTHER $5 bucks to my anal retentive Kraut boss for being 5 minutes late to our Monday morning meetings. (2 weeks left!!)

I read your dispatch (after catching wind about it last night from MP) and single tears started running down my face, like the Indian in the pollution commercial. I'm pulling for you.. sending good vibes, prayers, and pouring libations to the ventricular tachycardia diety, asking him to haunt other corners of the earth and to leave St. Louis.

Spent the weekend with my friend whose sister, brother in-law, and niece were blown up on flight 800 (he was the ABC sports guy). This IS a dangerous place.

BUT, I'm convinced that the benevolent nature of the Diety will step up to the plate in the coming days and feed Dad strength and a 4/4 beat.

Love always,

Dave

Date: Mon, 29 Jul 1996 11:47:28 -0600 (MDT)
From: cynthia barber <cbarber@unm.edu>
To: snarly <marjorie@cyborganic.net>
Subject: Re: dad update, 7/27/96

dear marjy

just logged on at work and found your message...hope you are still there in St. Loo - even more for your mother than for your dad (who has lots of folks hovering about him)...what a scary set of ups and downs...hope by now things are calmer and the docs and nurses have all agreed on both diagnoses and treatments...keep up your wonderful sense of humor....all good prayers rising up from here in the desert...lots of love behind you.

hang in

love, cynnie

Date: Mon, 29 Jul 1996 20:44:57 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Update, 7/28, 7:40 p.m.
To: "Carol's list"

As one of you said, no bad news is good news. No more electrical irregularities, Michael's breathing with less oxygen, and his right ventricle has picked up more function. Although no cultures have come back positive as yet, Cox insists on some sort of infection. His markers are that Michael has a fever, there is an elevated white cell count, and there are changes in the capillaries. (I hope I've got this last one right or my medical license will be revoked.) They're pushing fluids and kidney function is good. All the damn numbers are good.

Michael is still heavily sedated, intubated, but off the paralytics. They're weaning him off nitric oxide, levofed, and he's on 40% oxygen unlike the 100% he was on either Friday or Saturday. (It's all a blur.) There is slow but steady progress. I worry about Michael's spirits; when I told him during one of the less sedated periods that he was getting better, he shook his head.

I went out to the Science Museum so I wouldn't lose my mind, and to find some respite from the hospital, and what do I see in the medical technology section? Dr. James L. Cox doing open heart surgery for arrhythmia. Oy.

Love to you all--
C.

From: RuthHP@aol.com
Date: Mon, 29 Jul 1996 23:41:29 -0400
To: caingall@jtsa.edu
cc: marjorie@cyborganic.net (snarly)
Subject: Re: Update, 7/28, 7:40 p.m.

Dear Carol,

The news does sound better; I guess the path will be a slow upward spiral; but Michael does very well on those roads. Larry said he takes his time and he makes it because he perseveres. And he'll do that this time too. You, on the other hand, need everything done yesterday....so this must be really hard on you. It's probably even slower than Michael would wish, but one little slippery slope at a time. Tell him that Marc Meneau is waiting at the top with feuillete de laitances au jus d'oursins to pop in la bouche. (And to think my French is better than my Hebrew. ) Quel dommage!

I'm sorry that I missed your call; I was at work unpacking boxes, and tossing most of it. You have to know how much I love packing for a trip if I chose to unpack as a diversion.

Hope tomorrow continues to find improvement in Michael's condition. Michael knows about the power of positive thinking; he has to believe he's making progress. And remind him of the slew of articles, and talk show appearances he'll get out of this experience.

We're all rooting for Michael; send him our love, and to you too.

Duffy and Larry

Date: Tue, 30 Jul 1996 23:48:43 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Re: Bird brains
To: Douglas Cruickshank <dscnet@ix.netcom.com>,
Cc: marjorie ingall <marjorie@cyborganic.net>
MIME-version: 1.0

Or even worse, Martha Stewart Manse.

On Tue, 30 Jul 1996, Douglas Cruickshank wrote:

CAROL K.INGALL wrote:
Thanks for the laugh. (Omigod. The hospital has fried my brain. I'm beginning to sound like Ann Landers.) Not to worry. However, if you start feeling an uncontrollable urge to tell people how a little spray paint, an old Clorox bottle and a few cents worth of glitter can be transformed into a lovely centerpiece for those special occasions, it's time to seek help. Because that means you've crossed over to the dreaded "Hints from Heloise Zone!!!" from which few return.

xo to his Michaelness.
Doug

On Tue, 30 Jul 1996, Ari Alexander wrote:

> Carol, It's been a week and I do have a new appreciation for email.
> The only associations I have to   being in daily and constant correspondence with someone was in 1966-67 when Paul and I >wrote to each other each day keeping in touch between Brown and
>Smith. I ran to the mailbox to send my missive and to the box at the
>front desk to look for his arriving letter. And of course there were
>the years when I wrote to the kids at Ramah but that was one way. I
>wrote daily; they rarely answered. This week I have run in from
>work and turned on the computer-something I have not done in all
>the months we have been on email. Paul does not go to bed until he
>has checked to see whether you have sent a new medical update.
> I tell you this only so that you know how connected we feel and
>how the circle of support   is growing. Returning from New
>Hampshire I found Elie Lewis' message asking for info. I gave her
>your   email address and today she called with the Barnes Hospital
>address that Barbara Feldstein had asked me for. ( Excuse the
>preposition at the end, I do know better.)
>We had dinner tonight with Sally and Fred Rotenberg who asked
>about Michael's progress.
>You know, she leaned over at the dinner table and caught him up to
>date on the goings on in the community. He was genuinely
>concerned, expressing affection for Michael. When he learned that
>Michael was at Barnes he told me to let you know that Demetrios
>Lappas, M.D., the Chief of Cardiac Anesthesia is a
> colleague and good friend of his. He said you could definitely use
>his name to talk to Dr. Lappas and really felt badly that he had not
>directed you to him earlier. Fred is a cardiac ansthesiologist who
>knew about the maze and knew Dr. Cox's name and reputation
>immediately. Dr. Lappas was his supervisor when he did his
>residency at the Mass General, I think.
> Carol, I wish I could do something for you These days must be
> long, nerve-wracking and lonely. I hope that your growing expertise
>in medical terminology becomes unnecessary and that you
>can return to using your intellectual skills for Parsha Hashavua. At
>least you should allay your fear that you can't remember or learn
>new stuff. You seem to know more cardiac info than you probably
>ever wanted to learn.
> Hope to hear some encouraging words from way out west.
Love and constant thoughts, Sheila and Paul

Date: Tue, 30 Jul 1996 23:53:41 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Re: Update from Providence
To: Ari Alexander <Paul_Alexander@Brown.edu>,
Cc: marjorie ingall <marjorie@cyborganic.net>

What a great letter, Sheila. Actually we have met Lappas, a real honey. He was in charge of the anesthesiology for Michael's operation and catheterization, too, I think. 'm frankly surprised that Fred trained with him. His retinue was almost entirely Greek--a tribe of little Zorbas. Turns out it's his form of affirmative action: the entire department is Greek. Honest. If we see him again we'll mention Fred's name. Love, C.

Date: Wed, 31 Jul 1996 00:10:02 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Update, 7/30
To: "Carol's list"

The "A-mazing Randi"Cox (Doug,this one's for you) seems to be right about the sepsis theory to explain Michael's oxygenation problems. He's doing much better by all the criteria after hefty doses of antibiotics. If--God willing, poo poo (that's spitting over my right shoulder for you non-ethnics on this list) Michael can do without the nitric oxide he was getting to open up the constricted vessels, then they will remove the breathing tube. His cardiac output has improved, although he's still getting some arrythmias--in the atrium now. However, all the literature and the docs confirmed that this is a pattern for newly a-mazed patients. It was worrisome when Michael had difficulty converting back to a normal rhythm, but he did, and on his own.

I'm hesitant to say it, but it seems as if we're inching upward. Poo poo.Michael is frustrated and discouraged; the removal of the breathing tube will be a big step forward.

In the "This is a really wonderful world after all" category: I met a rabbi in the hospital who had taken one of my workshops. I asked her if there was a lend-lease clause with Temple Emanu-El in Providence: Could her synagogue adopt us? She visited Michael twice, spent an hour and a half chatting with me, and then took me out for dinner and a tour of the city. She can't be any more than thirty. Doesn't that make you feel good about the newest seminary graduates?

My sister is coming tomorrow, and Andy may leave Europe for a week or so, then go on to his internship at the museum in Hagen, Germany. He's finishing up his course at the U. of Krakow. Leave it to Andy to get a private lesson with Poland's last klezmer.

Love to all--C.

Date: Wed, 31 Jul 1996 23:34:17 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Update 7/31/96
To: "Carol's list"

The big picture: slow but steady progress. Michael is off all the medicines to raise his blood pressure up from the basement level where it ended up over the weekend. His cardiac output and index are stable. His right ventricle is beginning to work more efficiently--up 10% in function over the course of the day. His urine output is good; he's close to getting the breathing tube out.

The smaller picture: he's paranoid as all get out (the docs know about ICU psychosis) fearful, anxious, frustrated beyond belief. He thinks that the hospital staff is trying to kill him. He can't communicate because of the tube and the exhaustion. You get the picture and it isn't pretty. He's looking very yellow, so there's some problem with his liver processing all these poisons,and is most probably related to this bacterial pneumonia he's battling. The docs think this is not terribly significant; even the most cautious say the over all picture is improved.

Baby steps.

I'm so greatful my sister is here. I nearly lost it in the morning. Face it; I did lose it. The nurses sent the social worker and hospital rabbi on the raving lunatic. It helped, but Belleruth's arrival really
did the trick.

For those of you who want to write: Michael Ingall, Barnes Hospital,
CTICU, Barnes Plaza, St. Louis, MO 63110.

Love to you all.

Carol

Date: Wed, 31 Jul 1996 22:39:29 -0700
From: Douglas Cruickshank <dscnet@ix.netcom.com>
To: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: 31 July 1996 - 10:35PM

You are the "A-mazing Carol." Christ, I'd be tearing my hair out by now (if I had enough to tear out). And I love that Rabbi and I'm happy, too, that your sister is there. I didn't know you had a sister. I have four of them myself. I wish somehow we could switch places and you were getting these extraordinary daily reports. They are brilliant and loving and scared and hopeful and often funny. But what I think we who are reading them can see better than you (probably the only thing) is that they also chart Michael's steady (or perhaps unsteady) improvement. Slower than any of us want, but moving forward unquestionably. Michael is a bull. He is Ferdinand, but he is a bull; a giant spirit. He is also full of bull, but my point is that most every update reports progress--slow, but progress nonetheless. There have been some not so good days, but the ratio of good news to not so good is certainly weighted to the good.

I have little to go on but my own instincts, however I heavily discount the discouragement or paranoia. It doesn't surprise me. I'd be surprised if he weren't feeling those things. When I think of the tricks my brain pulls during a mere case of the flu, I can only guess what the surgery, the drugs and the psychic toll must cook up. Michael's doing it. He's going through it. It's a son of a bitch (to say the least) but he's prevailing. And so are you.

We think of you both all the time. Cathy calls from work (she's working the 8PM to 8AM L&D shift tonight) to see if we've heard from you. Just as I wrote that last sentence the phone rang and it was her. "Heard from Carol?" she asked. So I read your message and then she got beeped and had to hang up because one of her patients was about to deliver any second. "There are babies flyin' everywhere," she said.

Much love,

Doug

Date: Thu, 01 Aug 1996 22:22:28 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Aug. 1 Report
To: "Carol's list"

The day opened with a start--the dreaded early a.m. phone call from the ICU--Michael in ventricular tachycardia. (God shaking his bony finger to keep us from getting too cocky. Sorry, God; I'm bitter.) Then Michael was defibrillated and guess what? Atrial fibrillation that wouldn't quit. A big dose of amiodorone (forgive me, you mds out there. That's what it sounds like to my uninformed ears.) Okay. so each chamber wants equal time to make trouble.

I went to see an internist that Cynnie Barber's good friend Harvey Colten recommended--I was afraid that I had picked up M's pneumonia--it was nothing, just a bit of pleurisy. The doctor was so wonderful--so gracious, took me right away, didn't charge, loaded me up on some meds, insisted on walking me to the door to show me how to walk back to Barnes. People are so lovely--Dave Rosenthal sent a friend to look after me, I've been adopted big-time by the Caring Commmittee of Temple B'nai Amoonah, Lynn Liberman's synagogue. Seems I'm their first case and they're practicing on me.

Michael is resting quietly now. Still lapses momentarily into delusions, but was asking very appropriate questions, too (Why is he in Barnes and not Providence?) His heart is actually stronger, and given the morning's workout, that's real progress. His oxygen is pretty good, the ventilator is giving him only 4 beats a minutes, he's down on the meds for heart muscle contractility (docs, forgive if this is wrong--I did med school by osmosis only), and he's getting closer to extubation. The A-mazing Randi says each day beyond surgery is a milestone.

Love to you all--C.

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: Aug. 1 Report

the roller coaster rolls on.

>Date: Thu, 01 Aug 1996 22:22:28 -0400 (EDT)
>From: "CAROL K.INGALL" <caingall@JTSA.EDU>
>Subject: Aug. 1 Report
>To: "Carol's list"
>MIME-version: 1.0
>
>The day opened with a start--the dreaded early a.m. phone call from the
>ICU--Michael in ventricular tachycardia. ...*

mom's equilibrium astonishes me. i am so proud of her.

OK, for those of you who have missed my shopping reports, i shopped today!!! i got books for mom at Aardvark, the fabulous used bookstore (not cheap, but really good stuff). literary requirements: easily digestible, funny a +, no death.

here's what i got:

The Box Garden by Carol Shields
This Is Your Life by Meg Wolitzer (can you say "disposable fiction"?)
Operating Instructions by Anne Lamott
Leader of the Band by Faye Weldon (isn't everything this woman writes a middle-aged-chick-having-it-all revenge fantasy? if so, perfecto!)
Di and I by Peter Lefcourt (acclaimed comic novel from a few yrs ago about a nebbishy jewboy having an affair with princess di)
Saturday Night by Susan Orlean (a GREAT book by a new yorker writer, a look at different subcultures in america and how they spend saturday night)
White Butterfly by Walter Mosely (an Easy Rawlins mystery)
Making Saints by Kenneth Woodward (by the Newsweek religion editor, thought mom would dig even when she can't concentrate too good 'cause the guy writes so conversationally--a look at how the catholic church determines who gets to be a saint, who doesn't, and why. interesting for us hebes.)

(and for me, Why Bad Things Happen to Good People, which i actually have never read.)

more recommendations are welcome!!

--m

Date: Fri, 02 Aug 1996 16:34:04 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Friday, August 2
To: "Carol's list"

The best words of the morning: "He had a good night." Thus encouraged, the staff of the ICU mobilized to wean Michael off the respirator. He's now breathing on his own, getting a little more oxygen than the rest of us need, able to drink and speak. His oxygen saturation looks good, and his heart has been behaving itself. He's still somewhat confused--needs reminding as to where he is and can say with absollute lucidity that he had an elaborate delusion that he was shooting a movie in Italy and Switzerland, but then he'll click into his paranoid mode. Everyone, including me I think, is trying to kill him but Chris, his nurse.

He looks much better, and having him communicate, even if it's a tad delusional at times, is a big milestone. I'm trying to be guarded here--we've been over this terrain once before. Keep all expectations low. Chris, the only non-homicidal person in St. Louis, says to expect another week in the ICU to wean him off all the meds, and then another week on the floor.

Have a good weekend all.

Love, Carol

To: caingall@jtsa.edu
From: snarly <marjorie@cyborganic.net>
Subject: hi mom

poor mom. i talked to chris when you were hooked up to the chardonnay drip at Union Station. i'm sorry the seemingly inevitable step backward has occurred today. at least it means, by the odds, that there won't be another step backward tonite. (how's that for looking on the bright side?)

i was talking to a woman online whose mom had a double bypass (when the woman too was 29) and who was on fentanyl which she said was making her totally paranoid and frightened. the online woman kept calling it "that fucking fentanyl." a 40something hippie guy i know here got ahold of a fentanyl patch and hallucinated so hard he thought he was going to die (and he lay on his kitchen floor for two days). i wonder if this drug is not a big part of dad's problem. chris said she thinks the shortness of breath, skyrocketing blood pressure, etc, is caused by panic. she also said that dad seemed more lucid as they were lowering the dose of fentanyl during the day. it seems to MOI that they should be trying to get him off the fentanyl completely, onto a less dangerous painkiller, and giving him plenty of xanax or valium before and during the next attempt to wean him off the ventilator. a panic attack seems like as good a reason as any for the oxygenation plummet, particularly since the cardiac function remained good.

in other news, i got my hair cut today. pretty short! four inches off. as a witty little hairstyling joke, my girl jeneill then curled it in shirley temple curls. i look like a demented oversized toddler. but it's a Good Look.

i hope we are going to a party tonite. =['].... that was the cat saying hi. he is restless and cranky, keeps waking us up at 4am. at least he doesn't have an Infected Anal Gland like my friend darryl's cat. i told her it was at least a good band name.

hang in there mom. chris said you went to see a movie. hope it was good. love you.

--m

Date: Sat, 03 Aug 1996 21:07:11 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Re: hi mom
To: snarly <marjorie@cyborganic.net>

Love you too, my sweet, even as the star of the Good Ship Lollipop. (BR had Shirley Temple banana curls as a little girl. I, with straight hair, had the braids. the Heidi look.

So far, Dad seems to be doing fine. I think they're using a whiff of fentanyl, as Paul the nurse is wont to say, and atavan. Keep those fingers crossed.

Fran and Don sent the most yummy candy imaginable--some old St. Louis brand. (How do they know about such things?) I left one box for the nurses, and the second for us to snarf down.

We saw Courage Under Fire. Contrived, implausible, but just what the doctors ordered.

Date: Sat, 03 Aug 1996 21:28:28 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Sat. Aug. 3
To: "Carol's list"

Read yesterday's message for today. Actually, after being off the ventilator for six hours, Michael had to go back on. Belleruth and I went to Union Station for a much-needed drink and a movie. "Courage Under Fire." Does Life imitate Art? Belleruth wisely tells me not to get worked up--live for the moment (Yeah, really my style), and keep mellow. Nothing is immutable here, either the good or the bad. The BIG PICTURE is that there is progress. Today, Michael was extubated--so far for seven hours. When I wanted to revise yesterday's report, Belleruth convinced me to leave it alone, that it would prove to be prophetic. We are cautiously optimistic.

Good night all.

Love, Carol

Date: Sat, 03 Aug 1996 23:35:03 -0400 (EDT)
From: Marcia Kaunfer <75574.225@CompuServe.COM>
To: "\"CAROL K.INGALL\"" <caingall@JTSA.EDU>
Subject: Re: Sat. Aug. 3

Cousin Carol & Michael,

I've been reading the reports, but I have depended on Marcia for replies. My part has been in the misheberach dept. Your good friend Alan B. has been in shul almost every day to offer the misheberach--that's devotion beyond friendship. We all hope it's working. We hope Cousin Michael is improving each day, even though it must be hard to see much improvement sometimes. We also hope you can hold together yourself. It's very hard for the caretaker.

Thinking of both of you all the time.

Cousin Alvan

Date: Sun, 04 Aug 1996 18:47:11 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: sunday, Aug. 4
To: "Carol's list"

My report will be brief. The big picture is good: the heart continues to heal. Michael's remained off the ventilator and has had real food--a third of a can of chocolate Ensure. (Family: who would have thought that he and Tom would have so much in common?) The dreams/delusions alternate with lucidity. Michael will insist that his nurse from Central Casting, Alice, is drugging him and that he will report the entire house staff to the authorities in Providence, that the Gamm weddding is taking place in the ICU and then tell me he loves me and knows he's been paranoid. He's had trouble sleeping at night because he's been so anxious. Of course, the best cure for that is moving off the ICU, but everyone is proceeding ever so cautiously. If his respiration holds (he's had to have a little more oxygen--maybe because of the mucous in his lungs), then the balloon pump is due to be removed tomorrow. Baby steps.

Belleruth left with Art, my brother-in-law who flew in for the day. We had taken to calling ourselves the Weird Sisters in our moments of comic relief. She played the tough cop very well--keeping me from well-meaning, but exhausting phone calls. Andy is due in from Berlin this evening. Michael has been asking for him, and I know he'll be a tonic for the two of us.

Love, Carol

Date: Mon, 05 Aug 1996 22:00:28 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Aug. 5--Big Day!
To: "Carol's list"

What an improvement! Michael was perfectly lucid, simply thrilled to see Andy. He's managing on oxygen, doing fine off the ventilator. They removed his aortic balloon pump, and once that was out, removed the fluid that had collected in his chest and impeded his breathing. Then he was able to cough and clear out his lungs. Tonight he'll be able to sit up for the first time in about ten days.

Proof positive that Michael is being restored to health by good care and good friends: When I told him, making small talk, that Dr. Swann--the cardiac surgery pioneer--died, he responded, "Better him than me." Can full recovery be far away? In fact, it may be--Michael is so weak, that there's still a long way to go; but Andy and I are very heartened.

Love to you all,

Carol

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: Aug. 1 Report--YAY!
Cc:
Bcc:
X-Attachments:

SUCH good news. fingers crossed...

i am very glad that my brother is there for mom; j and i will be there soon, albeit for a short stay.

in other news, i cut four inches off my hair. now's a GOOD time for drastic changes!!!!

--m

Date: Tue, 06 Aug 1996 22:58:28 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: From Baby Steps to Quantum Leaps
To: "Carol's list"

Michael is off all of his tubes but one i.v. for his antibiotics. The room looks bare--there were three poles in there at one time, with God knows how many lines. He sat in a chair today, several times, and even got wheeled over to a window so he could see that there was a world beyond the ICU. His lungs are clearer, although he still needs oxygen because there is so much fluid left in his body. However, he's peeing like crazy and looks far less bloated than he did several days ago.

He's begun physical therapy, greeting his therapist with, "You know, I could have beaten the crap out of you three weeks ago." I think she hopes to have him walk, or at least take a few steps, tomorrow. Michael said he was humiliated because his 98-year old, totally infirm step-father did better on the bike pedals than he did.

He's nibbling on solid food, although he has no appetite. He's totally exhausted, crankier than all get-out, and uncomfortable. Now we know he'll live; whether I survive is another story.

Then next big step is the move out of the ICU. That may be on Thursday or Friday. I'll write again if there's something significant; if not, know that progress is being made, as Anne LaMott says, bird by bird.

Love, Carol

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: From Baby Steps to Quantum Leaps

woop woop woop woop

Date: Wed, 07 Aug 1996 21:05:32 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Progress Report
To: "Carol's list" 1.0

Progress, indeed. Michael's voice is stronger; the jokes are less labored as is his breathing. He's lost liters of fluid--his shoulders are downright knobby. He's got a mite more appetite and enough strength to negotiate ten steps on the platform walker. He's ready to challenge Tom, his 98 year-old step-father, to the Tour de France on the physical therapist's bike pedal machine. The winner gets the maillot jaune or a case of Depends. The house staff is beginning to talk about leaving the ICU. Progress, indeed.

Fondly, Carol

Date: Thu, 08 Aug 1996 20:25:27 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Thursday, Aug. 8
To: "Carol's list"

Another big day: Marjorie and her boyfriend, Jonathan, arrived from San Francisco just in time to see Michael walk, with assistance, about 30 steps in the ICU. He was moved to the cardio-thoracic unit, outside the ICU, and is settling in. He hasn't learned the baby steps lesson that the rest of us had to learn over the past two and a half weeks, but you all know that Michael is a quick study. He's in room 2352--throughly exhausted from lack of sleep, no nutrition for ten days, and weeks of inactivity followed by physical therapy from Eva Braun, so please don't call for awhile. I promise that when he's ready, one of us will let you know. Thanks for your concern; we feel it in cyberspace.

Fondly, Carol

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: Thursday, Aug. 8

i guess it's a good sign...i'm going batty. dad is kvetching so constantly and forcefully he makes carl lewis look gracious. but of course, that means that he's doing so much better it's incredible. there ain't no comparison to the way he looked when i left last monday. so we're now hangin' out in cardiothoracic step-down, which means the floor, in a classy ol' private room. i am a bit worried because i am convinced the floor staff are inept. in any case, they don't do well in comparison to the ICU folk. ten minutes ago there was a huge puddle of urine on the floor from an incorrectly hooked-up catheter, dad's amnioterone did not arrive, no one knows how to work the broken oxymeter whose alarm goes off with big-ben-like regularity, and the incompetent and officious tiny newly minted resident, doctor grubb, of my first email is back on the case and ready to partay. i loathe that little larva.

in short, feeling short-tempered rather than terrified is a nice way to be. for me and the rest of the fam.

oh yeah, andy JUST left, armed with enough cyborganic stickers to cover germany.

thanks for your support, everyone. it means more than we can say...

--m

Date: Fri, 09 Aug 1996 16:46:55 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Michael's progress
To: "Carol's list"

Today has been slow. Michael's having som more breathing difficulties, so physical therapy with the feminazis has had to be postponed. I'm trying to teach him the baby steps, progress isn't linear, etc. etc. lessons hard learned over the past two weeks, but as you all know, Michael doesn't hang with the patient patients crowd. Tomorrow is another day.

Love, Carol

From: FARKLEMPT@brown.edu
Date: Sat, 10 Aug 1996 18:56:48 -0400 (EDT)
To: ami6438@is.NYU.EDUSubject: This Bud's for you

I failed my first goal. I was not the first person to send e-mail from the ICU of Barnes-Jewish Hospital. I was otherwise preoccupied. I was on the table from 7:00 A.M. to 4:30 P.M. Briefly, the a-mazing Dr. Cox made the myriad strategic cuts of the maze in both my atria, clipped off the atrial appendages, repaired a mitral valve, and did a double by-pass. Post-op, I had recurring v-tach (a life-threatening arrhythmia), an aortic balloon inserted, removed, and reinserted, sepsis, and lots of fluid balance problems resulting in breathing difficulties. All of this took place in a fentanyl haze. Fentanyl is an anesthetic that is sold on the street for its hallucenogenic properties. (You ought to try it.) Essentially, I spent ten days tied down by gossamer wires, intubated, with fearful delusional fantasies. The colors were so bright. They dressed me up in white tie and tails and a tallis, and brought me to the weddings of dysfunctional families. I would proclaim, "Myrna, forgive your sister. For my sake, sign the paper. I'm a dying man." One night I found myself tied down in a brilliant yellow mausoleum. I shouted out, "I've already seen this movie. I don't have to stay till the end. I want my money back, and I want to be released." My night nurse, played by Kevin Spacey, smiled politely, and said, "In due time, sir." He lied. Another time I threatened to report the entire medical staff to Milt Homolsky. Things began to improve when I realized that my wife and the entire ICU staff were trying to kill me.

At this point, I guess, things did begin to improve. My head began to clear. One tube after the next came out. There was surprisingly little pain ever, although when a young resident tore with a grunt a chest tube from my thorax like a divining rod, I have to say that it stung a bit. They removed 1100 cc of fluid from one lung cavity, and I coughed up the world's largest mucous plug which is now on display at the St. LouisScience Museum.

I know it has been said that when Tom Scaramella visited me three weeks after my heart attack in 1980, he was quoted as saying, "When Mike Ingall describes his heart attack, it makes you almost jealous that you didn't have one yourself." This quote does not apply in the more recent situation.

Right now, my major problem is weakness. I can barely stand, I cannot stand without assistance, and when I walk twenty-five yards with assistance, people cheer. I do not have the strength to write this current e-mail, which my darling Carol is typing for me.

My children came from all corners of the globe; they were a great comfort to me. They made me realize how truly blessed I have been. They were an enormous help and support to Carol.

I have felt the love and affection pouring from all of you, and I weep at my good fortune to have you.

I cannot imagine having succeeded without Carol here. She is my rock and strength, my love, my beauty. I can't write about this any more.

You will begin to hear the brief, witty repartee of Farklempt in the days and weeks to come. For now, I can only say that Michael is alive with a new lease on life, will get better, and loves you.

--OI! I'M ALL FARKLEMPT!!

From:dscnet@ix.netcom.com
To: FARKLEMPT@brown.edu
Subject:Re: Sunday morning

Thanks for the Fentanyl recommendation. I recall it's effects fondly. As you know, I'm both pro-choice and pro-hallucination. And congratulations, by the way, on the evocative use of both "gossamer" and "mucous plug" in the same missive.

Your amigo, Doug

Date: Mon, 12 Aug 1996 00:27:01 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Michael's progress
To: "Carol's list"

Slow but steady. He's walking more, sitting up in a chair for most of the day, now writing his own e-mail. He enjoyed joking and trading stories with my brother, Michael, and is taking an active role in his own medical care. (Read he's noodging the house staff to death.) Tonight his catheter is due to be removed, which means another step towards independence. His face is less gaunt, and he's coughing up a storm which means he's clearing out his lungs. A good day.

Love, Carol

From: SilverVox@aol.com
Date: Mon, 12 Aug 1996 08:07:25 -0400
To: Farklempt@brown.edu
Subject: You're bad, you're back, you're Farklempt

FARKLEMPT is back, O happy day.

Hi, Sweetie. It was cool seeing you, even though probably don't remember seeing me.You had some great lines, such as,
"THE ROCK LADY CAME AND DUMPED A WHOLE LOAD OF ROCKS ON MY PECKER" - we liked that one a lot.

I was especially fond of (spoken in a very gravelly, slow, tough guy voice)
"BOY, THEY TELL YOU IT'S TOUGH..... BUT THEY DON'T TELL YOU HOW TOUGH"

there were several cast calls for your movie, and some fabulously evil, paranoid glares at my sister, who you thought was in cahoots with the wiley Paul, the duplicitous Chris and, of course, mendacious Alice. I got fabulous smiles, even though you were ready to pop me one too.

So, are you having fun yet???

Love,
Belleruth

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: This Bud's for you

milestone! dad's doing email! (his first missive is attached.) he is very crabby, but increasingly convinced he is going to live...a good thing. he's being an active participant in his own care (i.e., he is noodging the staff to death), the urinary catheter comes out today, he is sitting up for longer periods, walking farther (to the far end of the hall), doing his breathing exercises religiously. my mom's brother is there now; my father's sister may come later in the week. in short, things are going well. thank you all for your warm words of support.

unfortunately, in this fun month to end all fun months, we just got the word that jonathan's grandma has died. so we are off to milwaukee in a couple of hours, to return to SF on thurs. sorry to all who i was supposed to see or hang out with in NY and SF before then.

take care, all...

--m

Date: Mon, 12 Aug 1996 20:11:28 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Reflections
To: "Carol's list"

Michael walked almost all of the corridor today, give a ninety year-old, blue-haired lady a run for her money. Tomorrow he plans to kick her butt. My brother modelled the kind but tough coach for me. His lessons plus my need to get the hell out of here are priming me for prodding instead of pampering.

More thoughts about the kindness of strangers: the friend of Michael's childhood friend, Ellen Kaplan Aronson, who took Andy shopping for new luggage when his gave out in Poland; a friend of Marjorie's from the Well who sent me, a total strangers, some books to read during my vigil. Like you folks, family & friends, they made this ordeal far more doable.

Love to you all--Carol

Date: Tue, 13 Aug 1996 20:54:41 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Re: Reflections
To: Michael Krepon <krepon@stimson.org>
Cc: "Carol's list"

On Tue, 13 Aug 1996, Michael Krepon wrote:

So how did the frogmeister do today?
Love,
Michael

I figure that my response to my brother's question says it all:

1. He walked without oxygen down the hall and back, holding onto Michelle, not Michelle & Jeanie. (the physical therapists)
2. He spent the afternoon breathing real air with 93%-98% oxygen-saturated blood.
3. He pulled the world's biggest booger from his nose, which he claims impeded his breathing.
4. He ate pea soup from Basically Bagel which he proclaimed the world's greatest soup.
5. He visited with our friends, the Zaimans.

A good day. How did the chat with the Indians go?

Date: Wed, 14 Aug 1996 19:10:51 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Michael's progress
To: "Carol's list"

Zigs and zags. Today wasn't a great day; Michael's having some difficulty breathing and that's put all the other pieces on hold: physical therapy, eating, discharge. The docs have upped the diuresis and we hope he'll pish his way to good health. Baby steps.

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: Michael's progress

sigh.

Date: Thu, 15 Aug 1996 15:28:00 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Re: Reflections
To: Aaron Naparstek <aaronap@well.com>,
marjorie ingall <marjorie@cyborganic.net>
Cc: belleruth naparstek <SilverVox@aol.com>

Nephew--you crack me up. Love, Aunt Carol

On Wed, 14 Aug 1996, Aaron Naparstek wrote:

I figure it's only fair for me to keep you guys updated on my daily progress as well:

1. This morning woke up before 10:00 am for the first time since rendering myself unemployed three months ago. Exhausted by my own rigorous discipline I drank three large cups of coffee.
2. 93%-95% caffeinated, I laid down a B.M. the size of a trout. For
those of you not familiar with the technical terminology, that means it was a very large B.M.
3. Ate two bagels purchased at Russ & Daughters on Houston St.
4. Made phone calls and did freelance cyber piecework here in the home sweatshop.
5. Watched Republicans and yelled at my TV.

Now that's what I call a good day.

--Aaron

Date: Thu, 15 Aug 1996 22:31:01 -0400 (EDT)
From: Farklempt@brown.edu
Subject: This Bud's From Me
To: "Carol's list"

I was discharged today from the hospital, and am living in sin with Carol in the Hospital's hotel. I'm medically stable, and while I have made great strides every day, the steps are short, and I can barely walk 50 yards with a cane. Carol is my nursemaid, my beloved, my support, my very soul. Nancy was here the past couple of days, and was an enormous support. We will be flying home on Monday. I am still trying to discover who I am. I could write now with the usual insouciance of FARKLEMPT, but mainly caught up at this time with regaining strength, and I feel free to suck in and swallow all the love and bonding that I feel from you all.

Michael

To: Phunn
From: snarly <marjorie@cyborganic.net>
Subject: Re: This Bud's From Me

spit, don't swallow.

Date: Sat, 17 Aug 1996 22:44:09 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Getting ready to leave St. Louis
To: "Carol's list"

Michael is growing stronger, eating more (he pronounced hospital cafeteria food delicious), and becoming more independent. He's still very weak and somewhat anxious about each twinge. He visited the ICU, walking with a cane, and thanked all the nurses who worked so hard to keep him alive.

We leave on Monday--keep your fingers crossed, throw salt over your left shoulder, or whatever you do to scare off the demons of misfortune.

Thank you, from all the Ingalls, for all the concern and love you've shown us over the past month. The saga isn't over; there's still a lot of recuperation ahead. You've buoyed us up in the past; we may be calling on your support in the weeks to come.

Love, Carol

To: OperationCTICU
From: snarly <marjorie@cyborganic.net>
Subject: Getting ready to leave St. Louis

yay!

dad is acting all reflective about his near-death experience. his sarcasm and snottiness have evaporated, to be replaced by sentimental, philosophical, m.scott.peck-like musings. he's been leaving all these sappy i-love-you-my-darling-precious-daughter messages on my answering machine. i think he sounds like a moonie.

--m

Date: Sun, 18 Aug 1996 17:02:34 -0400 (EDT)
From: "CAROL K.INGALL" <caingall@JTSA.EDU>
Subject: Re: Getting ready to leave St. Louis
To: snarly <marjorie@cyborganic.net>

Fuck you, my precious darling daughter. FARKLEMPT still lives. It's just that he doesn't rule alone. Perhaps ultimately he will return more frequently, but there will always be a softness along with it, as is the case with you, as well.

Love, Dad

To: "CAROL K.INGALL" <caingall@JTSA.EDU>
From: ted@gti.net (Ted & Sonya Park-Taylor)
Subject: to our precious darling ingalls
Cc: unsassy@phantom.com

i remember when mashed potatoes tasted like a miracle. maybe we forget too quickly that mashed potatoes are miraculous.

go for the musings, farklempt! you see the world more clearly and truly than the rest of us right now. what we call "the real world" can't bear to ponder long the beauty and holiness wrapped into each moment. enjoy your vision while you got it.

i'm afraid i sound like a moonie, too. i could do it in korean, if you'd like...

peace and wholeness to you, ingalls. ted and i think y'all are way cool.

love, sonya

*****************************************************************************
Ted and/or Sonya Park-Taylor
ted@gti.net
two crazy theologians in the wilds of northern new jersey

August, 1996
I failed my first goal. I was not the first person to send e-mail from the ICU of Barnes-Jewish Hospital. I was otherwise preoccupied. I was on the table from 7:00 A.M. to 4:30 P.M.. Briefly, the a-mazing Dr. Cox made the myriad strategic cuts of the maze in both my atria, clipped off the atrial appendages, repaired a mitral valve, and did a double by-pass. Post-op, I had recurring v-tach (a life-threatening arrhythmia), an aortic balloon inserted, removed, and reinserted, sepsis, and lots of fluid balance problems resulting in breathing difficulties. All of this took place in a fentanyl haze. Fentanyl is an anesthetic that is sold on the street for its hallucenogenic properties. (You ought to try it.) Essentially, I spent ten days tied down by gossamer wires, intubated, with fearful delusional fantasies. The colors were so bright. They dressed me up in white tie and tails and a tallis, and brought me to the weddings of dysfunctional families. I would proclaim, "Myrna, forgive your sister. For my sake, sign the paper. I'm a dying man." One night I found myself tied down in a brilliant yellow mausoleum. I shouted out, "I've already seen this movie. I don't have to stay till the end. I want my money back, and I want to be release." My night nurse, played by Kevin Spacey, smiled politely, and said, "In due time, sir." He lied. Another time I threatened to report the entire medical staff to Milt Hamolsky. Things began to improve when I realized that my wife and the entire ICU staff were trying to kill me.

My children came from all corners of the globe; they were a great comfort to me. They made me realize how truly blessed I have been. They were an enormous help and support to Carol.

I have felt the love and affection pouring from all of you, and I weep at my good fortune to have you.

I cannot imagine having succeeded without Carol here. She is my rock and strength, my love, my beauty. I can't write about this any more.

You will begin to hear the brief, witty repartee of Farklempt in the days and weeks to come. For now, I can only say that Michael is alive with a new lease on life, will get better, and loves you.

September, 1996
Didn't sleep that well last night. But today...what a day. Showered, dressed, shaved. Had a breakfast of a cinnamon-raisin bagel with a mix of peanut butter, orange marmelade, and mooshed banana (my favorite). Answered 16 e-mail messages. Fought with Medicare for an hour on the phone to get the money they owe me. Went out with Carol, went into the store myself and bought some Tylenol. Went to the postoffice. Went to my office, where I was greeted by my colleagues, and where I sat in my chair and wept for joy. Then to a Cambodian restaurant, where we had Nime Chow, Carol had Pad Thai, and I had a humungous bowl of Duck Egg Noodle Soup (just kidding, cousin Alvan), with half a duck (just kidding, cousin Alvan) inside. I feel good. Getting stronger. Eating good food. Loving life.

Given my recent preoccupations with bodily functions, I thought you might enjoy the following:

Abe, Sam, and Harry are in the day room of the nursing home, discussing their woes.
Abe: Oi! You don't know what tzooris I have. I haven't been able to pee in 3 days!
Sam: You think you got troubles? I haven't been able to move my bowels in 2 weeks!
Harry: That's nothing. LIsten to this. Every morning at 7:30 I take a big piss. Then at 8:00, I take a huge dump!
Abe and Sam: So, what's the problem with that?
Harry: I don't wake up till 9:00.

September, 1996
Hospital and found my bill, 65 pages long. Suddenly I developed heart failure, lung failure, liver failure, kidney failure, all simultaneously. $195,600. That is correct, $195,600. Then I realized that my insurance would cover it, and my symptoms all disappeared. Then I realized that Blue Cross is still managed care. You may send contributions to:
Farklempt
P.O. Box 3856
Woonsocket, RI

September, 1996
Excellent morning, best ever. Walked around a huge block, stopped at Julio the Tailor and told him I had three suits for him to take in, did some work.

Joke of the day, forwarded from Kathryn Boosin at the Dalton School, where Nancy works:

Q: What's the difference between a woman and a computer?
A: A computer will accept a three and a half inch floppy.
Slept until 7:30 AM. Went for 2 very long walks. Did some work on the computer. Made lots of phone calls and received many visitors. Went for a massage by Ray Moriyasu, a massage therapist whom I knew when he was an attendant at Butler Hospital 20 years ago. It was great! Then across the street on Wickenden to a new Japanese restaurant, where we had great sushi with wasabi!!! and fresh ginger!!!. I gobbled it down, or as they say in Japan, I gobbered it down. I have gained two pounds and have begun to use my finger to vomit.

September, 1996
Tonight, watched La Forza del Destino on PBS from the Met. The first time I went to the Berkshire Choral Festival in 1986, we sang choruses from Forza under David Stivender, chorus master at the met. That was the first time I got atrial fibrillation. I wrote a story about it, called "Un poco accelerando." There was a moment when a soloist from the chorus, a bass section leader standing next to me sang out in a toast: "A la salute nostra!" Don't read this part, Marjorie, but your sappy father started crying again at the richness of my life, and a future of good health.

September, 1996
Tuesday drove the car.
Wednesday worked five hours at a program for deinstitutionalized backward schizophrenics.
Thursday went to a nursing home and did 5 consults.
It feels good to be working, productive, useful, and making money again.
Tomorrow, Iâll be going to the office to see three private patients.
I feel strong in the morning, but I peter out as the day goes on.

October, 1996
Every time I send out a health bulletin reporting that I feel better and am making progress, I get a whack from God the next day. Still:
I'm working half days. In good spirits. Multiple complications, e.g. hyperthyroidism secondary to amiodarone, which I have stopped, and which is probably the cause of my weight loss and muscle wasting (I look like a concentration camp survivor). Anemia that won't get better÷probably secondary to chronic illness. A little too much fluid. Still I feel hopeful and energetic most of the time.
All of this thanks to my team of doctors, including my Uncle Jack, to which I have now added a very excellent endocrinologist.

November, 1996
The news here is resurrection. Despite having my thyroid identified as the source of my problem, and despite being on anti-thyroid meds for the past two weeks, I have continued to lose weight÷a pound a day, and went down to 138 lbs. last Thursday (my usual is 188, and I came home at 160). It suddenly occurred to me that the reason I couldn't breathe was not that there was fluid in my lungs, but rather there was fluid in my lungs because I couldn't breathe, having no diaphragm and intracostal muscles left. Last week, I was giving up. I would stare at my Auswitzian body in the mirror, and mumble, "What a way to die. I was supposed to go out with a big bang÷a heart attack. But to waste away like this..." I was very depressed. I dragged myself to work in the mornings. I could barely turn the steering wheel on the Maxima. Thursday, I saw three patients in the morning (one was a Brown student who, being short, overcompensated by being a body builder. I had warned him in the past about the use of steroids. He took one look at me and said, "Doc, you need some 'roids.") I dragged myself to the endocrinologist's office, and insisted that he call a super-specialist in Boston whose area is amiodarone-induced hyperthyroidism. He put me in the hospital and called the guy in Boston. The guy told him there was a very rare type of hyperthyroidism caused by amiodarone which requires the addition of steroids (cortisone) for its treatment. On Thursday afternoon, gasping for air in bed, I received my first dose of cortisone. On Friday morning I awoke, breathing easily, I hopped out of bed. My doctor came in, took my pulse, and asked me to walk down the hall so that he could recheck my pulse after some exercise. I told him, "I don't walk—I run," and I ran down the hall and back. I ate two breakfasts, two lunches, two suppers. As you can tell, my natural hypomanic state returned in spades. Everyone rejoiced at the genius of the Boston doctor. Except me. I told them they were all wrong. Steroids don't work overnight for any condition÷thyroiditis, poison ivy÷you name it. There is only one condition where they work overnight. And that is hypoadrenalism÷a deficiency of cortisone made naturally in the body by the adrenal glands÷Addison's disease. I told them that was what was wrong with me. In the ICU in St. Louis, I had several bouts of shock÷no blood pressure÷for prolonged periods of time. That's how you lose your adrenal glands. Cathy knows that women after delivery who go into shock lose their adrenals. Jack Kennedy had it÷remember the skinny runt of a boy who suddenly put on weight and muscle after cortisone became available. There is a feedback loop in the body between the pituitary (at the base of the brain)÷the master gland÷and all the rest of the glands. When the body senses that it needs more cortisone, it signals the pituitary to send out more ACTH (adreno-cortical-tropic hormone) that arrives at the adrenal glands (atop the kidneys), and causes them to produce more cortisone. Except, if you have no adrenal glands, nothing happens. So the body starts screaming to the pituitary: "More ACTH, you dumb motherfucker...I'm dying." So the pituitary starts putting out all kinds of stimulating hormones, including thyroid stimulating hormone, which causes the thyroid to overproduce, as well as gonadotropic hormone, which tells the testicles to make more testosterone (Tim Allen grunts here). I had indeed commented when I got home that my beard seemed to be growing faster than ever before. So, later this week, we'll have a test to see if my hypothesis is correct (all my doctors now think that it is, and that I am a genius÷finally they realize!!).

Meanwhile, the guy who couldn't breathe and was ready to die on Thursday went out this morning to Barney's, bought bagels, lox and cream cheese and a paper, came home, made coffee, poured juice, sliced a tomato and onion, and brought it upstairs to Carol as breakfast in bed. Then Andy, who is home visiting, and I put in the storm windows.

I feel good.

November, 1996
We spent the past weekend in Chicago at my 30th medical school reunion. I loved medical school, and was so eager to go. I was alive, ate like a pig, was expansive and voluble, loved seeing my classmates (none of whom had changed one iota), and danced. Friday evening, I ate 14 large jumbo shrimp, lobster, peking duck, poached salmon, multiple desserts. Saturday afternoon, we went to a huge mall on Michigan Avenue, and walked and shopped for two hours straight. Things are looking up.
Harry Knaster, me, Steve Lasser
Harry Knaster What's left of me Steve Lasser

December, 1996
James Cox, M.D.
Barnes Jewish Hospital
1 Barnes Hospital Plaza
Suite 3108
St. Louis, MO 63110

Dear Dr. Cox:

Iâve waited until now to write because I wanted to send some good news, and itâs taken this long for that to happen.
Carol and I got to the airport, where I went by wheelchair to the pain. I staggered and hurtled down the aisle to my seat in coach. A young man came back from first class, and said to me, “Sir, you seem to be in some distress. It would be my privilege to change seats with you so that you can be more comfortable.” One of the things that struck me, both at Barnes, and even in stony cold reserved New England, was how kind strangers can be and how many good people there are in the world. You will forgive my waxing sentimental, but having been through the ordeal and agony that I went through, I take stock of the treasures in my life, and become tearful sometimes as I think about them. This is new for me. Iâm usually kind of flip and callous. My daughter, Marjorie, says, “Oh, God! Dadâs become a Moonie!!”
At home, I was able, to my amazement, to make it up the front stairs without being carried. Thanks to the PTâs at Barnes who whipped my ass and made me walk and climb stairs, despite my protests that I was weak and helpless.
The first few weeks at home were not too bad. I seemed to gain in strength. Thank God I had the surgery during the summer, because it was warm when I got home, and I could walk outside. After a few weeks, I went back to work part-time÷half a day a week. I was able to see patients in the office, go to nursing homes, go to street programs for schizophrenics. My illness and near-death experience was useful to some of my patients, e.g., a man whose mother had suicided when he was 10 worked through some of his feelings of anger and abandonment.
I had a fair amount of edema and pleural effusions, which I had had at Barnes, and these subsided a bit with Lasix and Aldactone. I spent a few nights in the local emergency room with shortness of breath from the pleural effusions, which some i.v. Lasix cleared up. I also had a Coumadin error early on with a big nosebleed. Then, I began to lose weight, even though I was eating like a pig with plenty of fat in the diet. I was wasting away. My cardiologist here got some TFT’s and they showed pronounced hyperthyroidism, which we attributed to the amiodarone. I had been on amiodarone before, for over a year, and I had normal TFT’s last January. Still, this time it must have behaved badly. I saw an endocrinologist here, who put me on Tapazole. Despite the Tapazole, I continued to waste away, so that I could barely turn the wheel of the car. My crit remained low at 28, with normal serum iron. They called it the ãanemia of chronic diseaseä--whatever the hell that means. About a month ago, I weighed 138 lbs (remember, on the day before I came to St. Louis I biked 35 miles and weighed 188 lbs). I was seeing a patient, a college student who is short with poor self-esteem and compensates by lifting weights. He used steroids when I first saw him for muscle bulk, and I cautioned him against this because he was bipolar. He took one look at me and said, “Doc, you need some ’roids!“
Turns out he was right. My endocrinologist here contacted another endocrinologist in Boston at the MGH (Gil Daniels), whose superspecialty is amiodarone-induced thyroiditis. It turns out that the hyperthyroidism of amiodarone is not straightforward hyperthyroidism, but a thyroiditis that requires steroids in addition to antithyroid drugs. He put me in the hospital and gave me 40 mg of prednisone. The next morning. I jumped out of bed, able to breathe, and was able to run, not walk, down the corridor. I ate two lunches, two dinners, and went home the next day. Iâve been hypomanic since--but then, Iâve always been a little hypomanic.
So now, I’m up to 158 lbs, which is probably fairly close to what I ought to weigh. I still eat like a pig. I’ve enjoyed throwing caution to the winds for a few weeks--eating steak, fried food, etc., which I havenât touched in years--but I know that the grace period is coming to an end, and I’m starting to make my diet a bit more sensible. I’m working half a day everyday easily and well. I like this schedule quite well, and I’m not sure I will want to do psychiatry more than that, even when I am at full strength. It gets harder each day to do more than that without selling your soul to managed care. Carol and I have been traveling--to Chicago twice, to Cleveland, next week to New York City, then a week in the Turks and Caicos Islands (British West Indies) for some R & R, Florida in January, where I plan to start a little bike riding on the boardwalk with the old people. I still get some fluid buildup from time to time, but a day or two of Zaroxolyn with a Lasix chaser gets it all pissed out.
I have three wonderful doctors here in Providence--an internist (Jim Myers), a cardiologist (Bob Meringolo), and an endocrinologist (Charles Kahn). They talk to each other regularly about me, they know their stuff, they know when to ask for help, and they care.
Now, what you are probably most interested in. Iâve been off the amiodarone for probably six weeks now. There was one bout of atrial fib (by my own pulse-taking) that lasted fifteen minutes about a month ago, during a frenzy of activity. There have been occasional extrasystoles (I don’t know what kind, since I’ve never had one with an EKG machine around), but I’ll be getting a Holter one of these days. Otherwise, the rhythm has been regular and steady, if a bit fast—80-85 at rest--possibly helped by the hyperthyroidism.
When I think back on St. Louis, I remember many things. I remember an ordeal and an agony. I had never really been sick before. I had polio as a child and couldn’t walk for six months, but that was sort of fun--everyone pampered me and brought me presents. I had an MI and cardiac arrest in 1980, but that was an adventure that I handled in my hypomanic way. St. Louis was the first time I was sick. It was an ordeal and an agony. There was no physical pain--just this indescribable awful feeling, with a wish to die and be done with it. The only part that was fun was being psychotic. It was an escape from the agony, and it left me with many funny stories to tell. I know it wasn’t fun for anyone else.
I remember the kindness and patients of the nurses in the ICU, and in the step-down unit. I remember the thoughtfulness of the social worker. I remember how kind and thoughtful all the members of the surgical team were. Even the receptionists on the units were special to me and Carol—Larry, C.B., Kevin, Brian, Manuela, Doug, Dr. Grubb, Amy, Maria, Helen, Debbie, Marlon, Alice, Paul, Mary, John. I guess you set the tone, and it trickles from the top down. I remember the kindness of the woman who made sandwiches in the cafeteria. My taste buds had atrophied along with rest of me at that time, and I could only eat the blandest of food. I asked her what kind of bread she had that was mild. She cut me samples of eight different breads to taste and choose from. I remember how the staff at Queeney Tower made Carol so at home.

One other story: When Carol returned to the Jewish Theological Seminary to teach, one of her and said, “You know, Dr. Ingall, I knew your husband was very sick during the summer. And I got married this summer. And when I was under the huppah (wedding canopy), I prayed for him, because, you know, God cannot refuse the prayers of a bride under the huppah. I can’t tell this story or read it without weeping to this day.

I remember how kind and supportive everyone was to Carol, whose ordeal was, in a sense, worse than mine. She had to watch me, as I lay dying, bloated like the Michelin Man, they tell me, raving in a psychotic delirium about everyone trying to kill me. (Everyone tried to dissuade of me of my paranoid delusions, all unsuccessfully. The only one who knew what to say was my brother-in-law, a natural-born paranoid himself, who visited, and said to me, “Yes, they are trying to kill you, Michael, and I’m here to protect you!” That was reassuring.
I’ll be coming down to for a follow-up on February 10, and I look forward to seeing you and as many members of the team that I can find.
Best wishes for a Merry Christmas and Happy New Year.
Thanks for saving my life.

January 1997
I began rehearsing the Brahms Requiem tonight with The Providence Singers. We just sang it through once tonight, without stopping. Just as my physical strength is returning. so is my voice. I sang the Messiah in December, and was scratching weakly. Tonight, I could make a good sound, and I had my full range--down to a low E. On a middle C, I can make quite a noise. My wind is short, and I can't sustain a note or a phrase without grabbing a breath here and there. But I can sing. And that feels so good. I wasn't sure I ever would again.

I got atrial fib for the first time at the Berkshire Choral Festival, in 1986. The next summer, I returned and sang the Brahms Requiem with John Oliver. That summer, I didn't get atrial fib at all, and when we came to the part where the chorus sings exultantly, "Freude! Freude! (Joy! Joy!)", I broke down and started to weep. The same thing happened tonight. No one saw. I am so glad to be alive and getting well. Freude

Another section goes: "Tod, wo is dein stachel?" "Death, where is thy sting?" I say, "Fuck you, death. Choose life that you might live."

March 1997
Not one to dwell on his illnesses or symptoms, I must nevertheless share with you one astounding side-effect of my recent hernia operation. The day following surgery, I really did have a good bit of pain (translation = I was writhing on the bed, howling in agony, begging for death and/or narcotics). By Sunday, however, we were out to brunch and dinner, and today I worked a full day in comfort.

I was under instructions to keep the binder on for 24 hours, and the dressing on for 48 hours, so I did not shower for 2 days. Fortunately, for Carol, I have no b.o., so there was no problem. When I did take off the dressing, however, for my first shower, I looked down to find that I now had a bright purple penis. What it lacked in grandeur and responsiveness was more than made up for by its bright and tantalizing hue. I guess it was a hematoma that sort of ran down there inside. It is quite remarkable, and I have taken to admiring it hourly. Others on the street seem less interested.

Thought you'd like to know.

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