Friday, December 30, 2005

Late treatments suck

Feeling frustrated today. Impatient, maybe. I really dislike late day treatments. A 1:30 means a 12:00 hospital arrival, a 4:00 hospital departure, and no food until who knows when. It basically shoots my whole day.

I am unhappy that I have to burden my whole family in going to the hospital with me for several hours. It’s the kids’ holiday break, and its not fair to them. I am also unhappy, and know I shouldn’t be, that I’m not more productive. It seems like EVERYTHING is hard to do right now. Making a simple plan to take some xmas lights down could have as well been brain surgery. And I feel like Melissa is doing everything right now. She hasn’t complained once. And she probably won’t, but I don’t like not contributing.

I have been wondering “when the good days are”. Treatment days aren’t good. I’m nervous before and feel like hell after. The day after treatment is ok, at best. I feel wiped out all day and confused. Last week, I had from Friday until Wednesday with no treatment. Saturday was bad, Sunday and Monday were good, but by Tuesday things were going down hill again. Maybe that was insurance related, and maybe the treatment was “wearing off”. If the latter, however, at what point do the treatments start having a long effect? I’ll be at 10 after today. I will only get 2 treatments next week because of New Years. I’m being impatient and expecting too much, I know. That’s me. But I need a point at which I know, with some certainty, that I’m not wasting my time and my family’s time. I think I already know that. I can see too much improvement in those days that ARE good, and also in even the days that aren’t so good (they aren’t as bad as bad days used to be). But I would like to understand where the mood up and down stops and the mood net improvement becomes noticeable. And, honestly, with the cognitive acuity I am felling I am experiencing today, none of this little ramble might be making sense.

Time to go get hooked up for another jolt. If I wake up with another cut in my mouth, I’m kicking somebody’s ass.

I am now sure that the duration of seizure is directly proportional to the level of bewildered following. My seizure today was the best (longest) yet: 42 seconds peripheral and 80 seconds EEG. My doc doubled the amount of caffeine she used from 500 to 1000mg, which I am told was the likely reason for the better seizure. I was pre-medicated with Torodol for headache and Zofran for nausea. My Beck score today was 30, which is a little higher than Wednesday. I think that that tool has outlived its usefulness with me. My score depends on mood at that time, and how I read the questions (context). My doc mentioned switching to another tool for next time. I didn’t wake up with a headache, but one developed soon thereafter. I haven’t had a problem with nausea from the procedures, but the pain meds usually cause it. They also pre-medicated with Pepsid, as always, to reduce the risk of nausea during the procedure. I got 2mg of Fentanyl right as I woke up, without asking for it. The headache that developed was on top of the Fentanyl. My doc had written orders for Dilaudid, another narcotic pain killer. Morphine had been making me a little nauseous. As it turns out, Dilaudid makes me a WHOLE LOT nauseous. I had more Zofran in Recovery II, and then Dramamine. I got a little better before being discharged, but the whole ride home was a battle to keep from being sick.

I learned today that last time, the anesthesiologist used a tool to measure my level of unconsciousness. I can’t remember the name. But it measures consciousness from a baseline of 85 downward. 60 is considered unconscious. Last treatment, I was at 35, which is what it took to get my vitals to a level where the anesthesiologist felt that I was far enough under.

Stats: I rolled into the OR at 1:35 and was in Recovery I at 1:55. It seemed like it took them longer to put me to sleep this time, and my IV was causing problems (wasn’t flowing as well as it should have been.) That had me a bit nervous. I certainly didn’t want to go to sleep on a functioning IV, have it stop flowing, and be waking up just in time for the seizure. None of that happened, but that didn’t stop me from worrying about it. I was in Recovery I until 3:35. Again, the length of the seizure, I think, had much to do with recovery time. I was in Recovery II until 4:30 (mostly trying to shake the nausea from the Dilaudid.)

I was clueless when I woke up in Recovery I today. It seems like I woke up and was awake for a few minutes before any real cerebral activity started. After a few minutes, my nurse said “Hi, you are in Recovery.” I was amazed. At that point, I couldn’t remember pre-op or the OR. It was all just a big blank. Much of that time has come back to me now, but it took a while. I was confused about a lot of things when I woke. Actually, I was confused about just about everything…nothing was really clear. But, now, I can’t seem to remember any of it. Very strange. Things from today are slowly coming back into my memory. But they may take a while to fully re-populate. This was, in relation to previous treatments, a doozy.

Thursday, December 29, 2005

Day after Treatment #9

Sort of a quiet day today. Mic is home for the holiday, as is Maggie. Melissa is off work until next week. So we were all here and did some shopping and running around. I am really dazed and hazy today. I keep having to ask what day it is. When I try to remember little details like that, they just don’t seem to be in my head, or at least not accessible. I am having a harder time today staying on task and focused. My head hurts much more today than it has on previous day-afters. I am tempted to label my mood today as “bad”, but its not, really. I just feel really worn out and like nothing in my head has any continuity or context. Maybe this is just what it feels like to have lesser intelligence. J Several times today, I have been unable to remember how many treatments I have had (which is also connected to remembering what day it is) and when the next one is scheduled. The ringing in my ears is ever-present. But its not a major issue. Its just there, and its become part of the ambient noise that always exists. Unless its really, really quiet, I don’t even recognize it.

I think I have previously mentioned the re-emergence of canker sores in my mouth. I have had these things my whole life, off and on. But for the last 3 years or so, while taking lithium, I haven’t had a single one. Since being off of lithium about as month now, I have had them with increasing frequency and severity. I woke on Wednesday, after treatment, with ainsidenside my bottom lip, and one in the back of my mouth in the cheek. Both of those areas, already, have developed sores. I think, when the docs put in the mouth piece for treatment, sometime after I’m asleep, they are beating my mouth up somehow. I will mention it to my doc tomorrow.

Kids and I have watched Star Wars I, II, and III in the last 4 nights. Doing “Star Wars” proper (Episode IV) tonight. Treatment #10 comes tomorrow at 1:30. No food before hand means a very hungry day by the time I get to eat (and then, after treatment, I won’t be hungry at all). Wish me luck!

Treatment #9

Treatment #9 is today. I am still in the dumps over this insurance thing, although my wife and doctor team keep telling me not to worry about it. It appears that Exempla West Pines, where Cigna wants me to go after January 1, doesn’t even DO ECT, except for Kaiser Permanente patients (which I am not). The only other place is nearly 2 hours from my home. It looks like the insurance piece may work out.

Treatment today was at 10:00, but due to a cancel before me, I got in early. The OR was empty today. This was the 3rd bilateral treatment. I mentioned to my doc that for the last several days (it had been 4 days since last treatment because of Xmas) everything had had the same smell: old greasy fried chicken. Everything. My wife’s clothes, my dog, my daughter’s hair, my son’s breath, everything. She was interestingly puzzled.

Same basic procedure today: Pepsid (stomach acid), Torodol (headache), Zofran (nausea) pre-medications. We added caffeine pre-op today, which is intended to potentiate the seizure. As the brain endures these treatments, it learns to protect itself by extinguishing the seizures more quickly. This self-protective action is where the neurotransmitter production and reallocation occurs, creating the therapeutic benefit. So, with each treatment, the docs do what they can to make sure the seizure isn’t stopped too soon (remember, science says that I need at least 20 seconds for benefit.) The caffeine they use in medical contexts is NOT Starbucks. Its IV, and it tastes like a weak garlic olfactory (nasal) whiff. Then, enough etomidate to (as the anesthesiologist puts it) put an army to sleep. The trick this time was adding the caffeine, which inhibits sleep, and balancing the etomidate, of which I already need a lot, to compensate. They used versaid as an adjunct to keep me out a little longer until the paralytic wore off. I went into the OR at 9:45, and was in recovery I at 10:05, and Recovery II at 11:15. The headache was a little better today, and I wanted to stay away from pain meds as much as possible. I suspect that the day after my last treatment was as bad as it was due to pain med hangover. So, 2mg of Fentnyl IV, which is very short acting but quick and effective. Then 2 percocet in Recovery II, and 2 more about 7:00 that night at home. Not a pain free day, but manageable.

Peripheral seizure today was 17 seconds, and the EEG was 39. The doc’s noted that there was excellent sine wave pattern and an abrupt cessation of EEG activity. Both of those things make for a beneficial seizure.
Today was the first time I have woken in Recovery I and known I was in recovery. I felt like I woke up pretty cleanly. Going to sleep is a strange event. I know its coming and, every time, almost involuntarily, I say “good night” or “here it comes”. But then I wake up in recovery and cannot, at that time, remember going to sleep. Its like that slice of time from just before unconsciousness to when I wake up isn’t in my memory at first. Odd sensation. I was more talkative today, in Recovery, than ever. I talked to my nurse quite a bit, and with another patient in Recovery II. Overall, this one was very different, and better, than the others, despite the nausea on the drive home.

#10 Friday at 1:30!

Tuesday, December 27, 2005

Back to Square 1: Thanks CIGNA

Back to square 1. Right back to fucking square 1. I learned a few days back that Cigna, my insurer, and the facility at which I am being treated (in fact, the facility at which I have done both of my inpatient stays also, because it was the facility of choice FOR Cigna) are not continuing their relationship as of January 1. That means that, technically, they will no longer be “in network”. Cigna, I was told today, doesn’t have an “out of network” plan for mental health. Cigna does not intend to continue to cover me at Porter (current facility) after December 31. Instead, they want me to move to Exempla West Pines (a place I've never been) to continue treatment. Apparently, these assholes have never put their lives into someone’s hands, been put to sleep, and been put into an electrically induced seizure for the sake of saving their lives. Apparently, they don’t have any fucking idea just how God damned scary that proposition is, to begin with. Apparently, they don’t give a fuck about the multiple steps backwards in my progress all of this is causing.

Honestly, I just barely had the courage to begin ECT initially. I mentioned before that had the OR been any further from pre-op on the first day, I would have backed-out. I just got the current bunch of professionals trained. They know how much anesthesia it takes to put me down (which, I guess, is much more than it takes most people) and which flavor works best, they know how much paralytic to use, they know how to pre-medicate for headache so that I’m not removing an ice pick from my temple (not as big of one, anyway) when the procedure is done, they know to use versaid to keep me down long enough for the paralytic to wear off (so it doesn’t feel like I’m awake and can’t breathe or tell anyone I can’t breathe), they know how to medicate for pain afterwards, and I know what to expect. Knowing what to expect, for something like this, takes more of the fear away than anything else. I don’t have it in me to go through those trials and test runs, those teaching sessions, with a new set of doctors, anesthesiologists, nurses, and others. Even if I am able to do that, I’m not interested. Its just not worth the fight. Its not worth the shit I have to put everyone around me through. Its not worth starting over. In the event that it should come to be that I am not still fighting this fight, still writing this blog, that my resolve doesn’t stand up to the demands of this battle, blame Cigna Healthcare. Everyone, please cast a fucking stone at Cigna. Make some noise, so that if this happens to me its not for nothing, so that maybe it can help prevent the next guy from living through this treatment with health insurance hard at work trying to trip things up. In this case, Cigna will have sold my well being for a few measly fucking dollars in their dollars and cents world of managed healthcare. Just another factoid in my stance that, until you live with depression, either in your own head or in the head of a loved one, you don’t understand. You can’t. Otherwise, it would be obvious to those making decisions about the quality of my care and my life, that this kind of change, mid-treatment, in this type of illness, just doesn’t make any sense, whatsoever.

My options, as I know them now, are to pay $800-$1000 per treatment out of pocket and stay in the same facility (those being dollars I don’t have just lying around, given that I am on short term disability from work due to my illness), or put my life, and the well-being of my family in the hands of persons I am yet to meet in hopes that they can just pick up the ball (i.e. my brain) and run with it. Or, behind curtain #3, there is the fat life insurance benefit that pays off even if my life ends by my own hand. Decisions, decisions.

At any rate, I am 8 treatments into the plan. I have two scheduled this week (1 Wednesday at 10:00 and one Friday). And then who knows. Wish me luck. It might be all I have at this point. End of rant.

Monday, December 26, 2005

A fair price to pay.

Today has been a different kind of day. Different in many senses. First, my son is home, and is “transtioning” home for good. He is mentally ill and has lived, most of the time for the last 14 months, at a residential treatment center for kids like him. H eis home for the holidays, but he will be moving home for good in early January. He has learned some great skills at the RTC. He has laso learned some things, some coping “methods”, which don’t go well in my house. He is, at best, a strange person. I love him, and I would do whatever needed to be done to make things work for him, but having him home will be a whole new challenge. I can’t decide if the timing is good or bad. Not that it matters…it is what it is. Either it is better ot be making those changes WHILE making changes to myself through ECT and the related events (making all of the changes at once, instead of dragging them out forever), or re-incorporating him into our daily lives will be a strain which will detract from the progress I am and will make on my own front. I guess it can be either I decide it to be. So far, its been a challenge.

Today I seem less uptight, in general, about tings than usual. I am able to “go with the flow” a little more. I still have some times of sudden irritability. They seem short lived, and I recognize them quickly and deal accordingly. But they are still popping up every so often. I find myself more interested and caring about things than I was even a coupl;e of weeks ago. Things like upkeep around the house, money (but in a healthy, not a worrying, sense) and credit, and organizing things in general for a better future. There seems to be a zeal that has been absent for quite some time. A zeal that doesn’t feel whimsical or manic. It feels strange. There are differences in perception about my self and about my world that I notice, and the depth of which I appreciate, but that I can’t put my finger on or quantify just yet. It feels like shedding a thick coat of bubble-wrap which I have been wearing for as long as I can remember.

I went out to eat and shopping with the family today (the day after Xmas, no less). Target, iPod store, a couple of others. Every place seemed packed with people and completely nuts. But it all went well. There is simply a feeling of being alive again, instead of a feeling of simply surviving. I didn’t have days like this before ECT began. They just weren’t there. There are still days, like Saturday, that suck. And they suck just as bad (maybe worse, because they are a different kind of bad) as my days used to suck. But at least I am having days that climb up and out of the “bad day” category. Even my good day, before ECT, still lived in the “bad day” realm. I am, in fact having, nice, even, “happy”, content days.

My Doc will ask me, on Wednesday, “So, how have you been?” She will mean it in earnest. And I don’t have an answer. I’ve been considering it. It is just too big a question to roll up into a “good” or “not so good”. But I’ll answer just like I said above. I am having days which are better than any days I was having before. And days that still suck. And I will have little answer for what is driving the quality of those days. I can answer that question a little down the road. But, important to consider: I have been taking welbutrin only (no lithium, no Ritalin) for close to a month. And things are improving. Do I think ECT is working? Hell yes. Do I have some fuzzy memory and moments of confusion. Yes I do. Are those things, so far, a fair price to pay for the improvement I’ve seen. Without a doubt.

The way things should be

Today seems better than yesterday. The dark clouds from yesterday (which came from seemingly nowhere) are gone. I think more and more that the pain meds might have been somewhat to blame. I think I will endure the headache a little more with the coming treatments in lieu of medicating the pain.

The day has been good, for the most part. I find myself moving between being down, scared, uncertain about my future and the direction I will take from here, and being excited that I have the opportunity to choose a direction that works for me and to do something I like and that has meaning. The unknown is scary, and I have a lot of unknown in front of me. The outcome of this treatment is unknown, the amount of relapse, if any, is unknown, my work capacity, work taste, and reset work ethic are all unknown. But what is a known quantity is the fact that I can be in control of shaping all of those things. I have a chance to erase all of the pigeon-hole ideas I have about myself and what I am supposed to do and be. I have the opportunity to restructure all of that, and make my life going forward more what I want it to be and less what I feel like I should force it to be.

Sunday, December 25, 2005

Terrible Day

Today has been an absolutely shitty day from the start. I don’t know why. It’s the day after treatment, which has usually been good lately. I had a lot of pain meds yesterday post-treatment, including morphine at the hospital and percocet at the hospital and at home. I think maybe I over did that, and that they are effecting my mood or energy level. I don’t have any thing else to blame today’s mood on, except maybe for Christmas itself. My head has seemed very fractured and disorganized all day. This morning, I got very upset with myself because I just “couldn’t think.” There was something there that felt like depression, but it was different. A more lonely, distant feeling, and one of frustration from having fought this thing so diligently now, and still feeling like I’m losing. Today didn’t feel like worthlessness or hopelessness, but more like I am adrift, not tied to any port, or that I just have no definition to my life. Maybe that’s just scarey. I don’t know exactly what was driving things today, but I hope its gone tomorrow.

We went to a friends’ house for brunch today. I pulled it together enough to handle that, but I was pretty quiet. I also think the pain meds are interfering with my digestion. Pain meds are known to “stop things up”, and they have. I’ve had a horrible stomach ache all afternoon and been unable to eat.

I just feel this misery inside, and where before I could put a label on it and it felt like the same old depression, today it feels different. It feels lonely, and futile, and like I’m inflicting my illness on everyone around me and ruining everyone’s Christmas. I’m not putting up all of this fight with ECT and taking up everyone’s time and emotional energy to still be feeling this way! Now, not only do I feel depressed, I also don’t have any career direction (having moved further and further into believing that a return to mortgage is not likely). I feel like a ship lost at sea. And I can’t help but fear that the only people who give me bearing, those upon whom I have been able to rely for strength in the past, are growing as weary as I am, and tired of fighting, and losing, this fight.

Friday, December 23, 2005

Feeling a little punch-drunk

I think each successive treatment continues to wipe me out more. Today’s #8, has just put me on my back. Not from pain or mood. I just can’t seem to get my head together or wake up. My mood held very well from #7 to #8. I was a bit irritable today, but no more than most people get at times. Otherwise, no depression, no mania, and no other mood characteristics which I would label as bad or unusual. I heard a Brian Setzer Orchestra song on the Today show this morning, and had it stuck in my head. I walked around singing it all morning. That’s not normal for the “me” of the last few years. Mic is home, and rode with us to Porter. Maggie, still a little under the weather, stayed home. Melissa ran home during recovery and brought her back to pick me up. I found myself really dreading this treatment and ready to have it behind me.

Pre-op was as usual today. I got there 90 minutes before scheduled treatment time. I was scheduled for 11:30, but actually went in at 11:00. The Day Surgery area was unusually quiet today, and there were some earlier cancellations which moved me up in the line-up. I was in Recovery I by 11:20. My Beck score was quite a bit better today, at 28. The anesthesiologist pre-op’d with 50 mc of Fentenyl (pain) Zofran (mg?) (nausea) and lydicane for the burn caused by the etomidate (sedative). My IV was in a small vein in my hand, so the etomidate hurt like hell anyway. I remember it starting to burn, and intensifying, but I think I was asleep before the pain resided. We use d40mg of etomidate. Everyone keeps commenting about how much sedative it takes to put me down. My seizure stats were: peripheral – 11 seconds and EEG – 30 seconds. These durations were significantly shorter than last treatment, but duration of 20 seconds or more with a nice clean cessation is considered therapeutic. Studies show that increased duration does not indicate increased efficacy. Rather, studies have shown that the degree to which electrical stimulus exceeds seizure threshold is a much better parameter for predicting treatment efficacy. (see Likewise, seizure duration tends to shorten, given the same stimulus dose, in later treatments because ECT has an anticonvulsant effect on the brain, thus “teaching” the brain to control convulsions as treatment progresses. Seizure suppression correlates to the degree of seizure generalization, therapeutic dosage adequacy, and bi-lateral stimulation. Nonetheless, the plan is to add caffeine to the pre-op next time, which is intended to extend seizure time.

In Recovery I, I had 10 mg of morphine 5 different times (total 10mg), along with a hit of fenegrin (6mg) for nausea. Nausea was much better today, but the fenegrin made me really sleepy. The longer it takes to get pain under control in Recovery I, the longer it takes to get to Recovery II. Today, I didn’t move to Recovery II until 1:20, 2 hours after recovery began. It could just as easily been 10 minutes for all I knew. I was in Recovery II until 2:45 and then discharged after 2 325mg percocet tabs. I got home, put in a movie and slept through the whole thing.

It still appears that my medical insurance will cease working with Porter Hospital on December 31. No new contract has been finalized. Two possible outcomes are possible: 1) I will have to finish my treatments at another facility, Centennial Peaks, which is about 70 miles from my house. CP is “in network”; 2) I will convince my insurance to consider Porter “in network” since I am 2/3 through my treatment already and there is not another reasonably close facility “in network.” I see a fight coming. That’s all folks!

Thursday, December 22, 2005

The sun rose brighter on today.

Of all the bad things I might have expected from this morning, none of them manifested. I woke after a great sleep, about 8:00, no headache, no jaw pain, no sore calves. Yesterday was tough. Ok, so maybe I over-dramatized a bit in my post Wednesday evening. I was writing what I thought was fairly accurate at the time, but looking back from today, I don’t remember it being quite that bad (maybe that’s the beauty of it…not remembering). I was in a good mood this morning, humming xmas songs and doing things around the house. I feel like I’m out of the dingy coffee can I’ve been living in for as long as I can remember. If not for this underlying worry about the future, income, work, stability and balancing all of that with upkeep of my mental health, I would be as at peace today as I can imagine. Melissa keeps telling me, and I keep telling myself, to just lay down those responsibilities for now and get better. Things are covered pretty well for several months, if necessary. If I worry about these things, I can’t focus on getting better. If I don’t get better, worrying about these things is a short term view anyway. I am lucky to have such a wise partner. The conclusions I did come today, however, is that I needn’t feel tied to going back to the mortgage business. I got into that business on a whim, to have something to do, and because it worked for me at that time. I made some good money there, but I’ not handcuffed to it.

My head is pretty spacey and my reality is fairly detached from my surroundings, neither of which is presenting any real problems. I took Beau for an hour walk. The weather is nice (cloudy but warm). I would like to make those walks a regular occurrence. I’m sure he would like it too. Not only is it good exercise, but it gives me another backdrop against which to stop, think, and reflect. So far, although yesterday seems like it was about an hour long, I don’t really notice any memory gaps. I know yesterday was longer than it seems, I have too many snapshot memories for it to seem otherwise, just not a lot of context. The whole day was either at the hospital or lying down at home.

I can’t say that I am looking forward to my treatment tomorrow, #7. it will be my last one until 12/28, 5 days. That will give me a good opportunity to see how I hold up, and how the treatment’s stamina is at this point.

Wednesday, December 21, 2005

Out of the fire, into the firey depths of hell

You know that feeling when you get hit by a bus at a high rate of speed, and then the bus driver backs up and parks on your head, and then goes to lunch. I didn’t either until today. Going to a bi-lateral treatment is like going from little league to the world series. It’s a whole new ballgame.

When I woke up in Recovery, I was lost. The nurse, after a few minutes of me drifting in and out of sleep, said “Hi, you’re in recovery.” It took it a few seconds to register. “Recovery? I don’t remember going in for the treatment.” I really didn’t. After a while, I did remember some sort of landmark moments from pre-treatment. I remembered that neither my doc, nor the other doc who had treated me, had done my treatment. I remembered talking to the anesthesiologist with the accent, and discussing meds mix. But it all took a while to come back. My memory, nonetheless, is very sketchy over a sort of indefinable period of time. Indefinable because the time period seems inconsistent. Overall, the blurry part covers the last day or two, but some of that time is still clear, and other parts aren’t.

The headache, which has to be the worst headache I’ve ever had in my life, didn’t take as long as the memory to manifest. Because there is now stimulus being applied to both sides of my head, both sides of my jaw were really stiff. But the real headache was a stabbing pain in each temple. I guess my pain was apparent to the nurse. She had 4mg of morphine in the IV before I asked for it. Today, they pre-medicated (pre-anesthesia in the OR) with Fentanyl and Toradol. Then lydicane and etomidate. I guess it worked.

Before I was out of recovery, I had had 10mg of morphine. The pain was better, but not gone, but I wanted out of there worse than I wanted the rest of the pain to go away, and I knew more pain meds meant a longer stay. By the time I got to recovery 2, I was nauseous from the morphine. Take the bad with the good, I guess. The nurse gave me something to ease the nausea. After what seemed like hours, I got to get dressed and go home.

The seizure, as is obvious from the description above, was a whopper. Peripheral was 34 seconds, and the EEG was 64. The doc’s notes said that it was as good a seizure as could be hoped for. Nice even rhythm and then a very solid cessation. My Beck score today was better, 32. I’m totally wiped out tonight, even after laying down for almost 2 hours after getting home. The morphine has worn off and the headache is coming back in a hurry. The doc gave me a small script for oxycodone, which I thought was unnecessary at the time, but I’m very happy to have now. My calves are getting sore, like from earlier treatments. Tomorrow morning should be very interesting. I keep expecting to get hungry, since I haven’t eaten since 8:00 pm last night (its 5:30 pm now.) Time to deal with this headache and go to bed. Not looking forward to Friday’s torture.

Tuesday, December 20, 2005

Magic #6 holds?

As risk of putting the big jinx on things, as of 6:00 pm, Monday's treatment, #6, is holding.

I am certain that something has changed today. Its not quantifiable or even qualitatively definable. But Its different. As if the shit colored glasses through which I have viewed all of life for as long as I can remember now has a different hue. Not rose colored. Not yet. There is still a filter for every thing I perceive, but it’s a better filter. Noticably better. Melissa commented that several “little things” which would have prompted an explosion just a couple of weeks ago have come and gone with much less stress and emotion. But, she also commented that there is some definite “fuzzy memory.” I have to agree. Nothing critical or life important, but rather, conversations forgotten and thoughts which seem much more fleeting than usual.

Except for my continuing impatience about the “future” (i.e. money and financial well-being and profession), today has been the most peaceful day I have had in as long as I can remember. I can’t seem to let the future be the future for now. It just seems against my nature to let something of that magnitude be “outside of my control.” Today, my inclination is that my days in the mortgage business are very numbered (by choice). See, even in trying to leave my future “to be decided”, I mentally narrow things down. I am lucky to have the support of family, and to know that no matter what path I decide is the right one going forward, that I can rely on that support.

Coffee-shop Barometer: I am becoming less and less concerned with all of those “others” that usually create an inherent annoyance. I’m not “as concerned”, still, there is fringe annoyance everywhere if I look for it. Dogs barking, phones ringing, persistent and repetitive noises. Those still present a quick irritant.

Scheduled for tomorrow at 11:00. I am second guessing the move to bi-lateral treatment, given the changes I notice today. I think I will put the information in the doctor’s hands and see what she makes of it. Melissa still wants me to make the change.

Aftermath of #6

Pretty irritable Monday night, but I think mostly from being really exhausted and from pain meds wearing off (they seem to do that to me.) I noticed, later in the evening, for the first time this year, looking forward to Xmas. No environmental reasons for this change that I can think of.

I feel pretty good [Tuesday] morning. Woke up with a bit of a headache, but its gone now. I sat on the couch and read a magazine (and the last time I did that is ancient history.) I feel sort of “in the middle” today. Not down or pessimistic, not bubbly and happy. Maybe “content” is a good word. I could think of a list of things about which I should be malcontent, but I’m choosing to put my thoughts in other places. A choice I have not often been able to make for myself for quite some time.

I learned yesterday that the contract between my HMO and my hospital is scheduled to expire December 31, and no formal plan to extend it is in place. That would put me “out of network” for the continuation of my treatment. I have 4 more treatments authorized by insurance, to get me through year end. Since my hospital is the only game in town in relation to ECT (aka there is no “in network” facility form which to receive treatment), something will have to get worked out.

My doc, as I have mentioned, is on vacation this week. Dr. Hestand is filling in. Dr. Hestand called in “sick” today, which I’ve been told she “never” does. There is a third doc who may be pulling triple duty tomorrow if Hestand isn’t back. Oh, the drama.

Set for Wednesday at 11:00. Probably switching to bi-lateral, and expecting some increased side effects.

Monday, December 19, 2005

Treatment #6

Dr. Hestand was my Doc today in the absence of my usual, Dr. Clopton (on vacation). Hestand did my titration also. Seizure was SHORT today, which concerns me a little. They gave me two stimuli because the first seizure was not of therapeutic duration (only 5 seconds both peripheral and EEG. With a second dose, peripheral was 2 seconds and EEG was 23 (compare to 74 seconds at longest). I rolled out of Pre-Op at 11:35 and into Recovery at 11:57. My blood pressure, which runs high and is treated, was the lowest I remember, ever: 117/59. My pulse O2 before the O2 mask was 99%. Used same mixture of meds today for treatment. Toradol in Pre-Op for headache and jaw ache. Lydicane to start in OR, more etomidate than most people need, versaid (the fast acting benzo to prevent waking up too soon). No issues today. It was over before it began. I notice these little procedural differences between teams of people. With all 5 of the previous treatments, a nurse has taken one of my socks off, wrapped just above my ankle with an ace bandage and then applied a pressure cuff (to prevent the paralytic from reaching that foot which is then used as an indicator of seizure) and placed the removed sock over the toes of the other foot. Today, my sock was left on and used as the ace wrap, and the cuff was put on over the sock.. Makes me more comfortable when everything is the same every time.

Post procedure, they gave me 50mc of Fentanyl followed by 7 mg morphine (4mg and then 3 more). We discussed just leaving the fentanyl out of the scheme next time and going right for the morphine. I took two percocet tabs just before leaving.

I’m a bit concerned about the short seizure today. I have been told and have read that the brain will do what it can to remain in a state of homeostasis (remain unchanged or eradicate change when it occurs), and that the brain become “tolerant” after a while and ends seizures earlier. This is the point when bi-lateral ECT is introduced.
My Beck score today was 35. it seems like the total score is staying about the same, but the individual answers are beginning to change. My jaw pain, which was the worst today and yesterday that it has been, was gone when I woke up. It is slowly creeping back as all the pain meds wear off and the workout form today sets in. Every time I dozed off in Recovery today, this damned alarm went off. I guess my respiration or heart rate were right on the alarm threshold when I was awake, and when I dozed they dipped below, setting off the alarm. At first I thought it was a coincidence.

Another patient in recovery overhead me talking to my nurse about the duration of seizure. He had just had treatment #9. he said the same thing happened to him at #6, and they switched him to bi-lateral. He hadn’t noticed any memory or cognitive differences, and he was feeling much better.

Day of Treatment #6

Hard to believe I've been in there 5 times now. Enough to know everyone by name, and to know what nurses can do an IV, and which shouldn't be allowed with sharp things at all. I guess I'm neither nervous nor excited about this one. I'm looking forward to feeling better, at least for a time afterwards. And I'm optimistic that this might be the one to "stick. I'm riding on with a neighbor, and Melissa is meeting me there. My daughter is getting her ortho opinion and her hard cast today. She was very excited. I'll try to take copious notes, as always and report back later. Wish me luck. (and throw a rock at Tom Cruise if you happen to see him.)

Long Sunday, but it got better

I stood in the kitchen this morning in tears, apologizing to Melissa for letting everyone down by still being depressed. I feel so guilty that everyone is putting forth all of this effort for ECT and everything else, and I’m failing. She hugged me and assured me (as always) that I’m not letting anyone down, and that if we just keep doing all we can do, things will get better. Maggie came in and hugged me from behind. “Its going to be ok, daddy.” How perverse, being assured by my 10 year old that things will be ok. I’m pretty sure its my job to assure her of such things.

Using the coffee joint barometer, I notice that usually I could remember 20 or 30 people for hours after leaving the shop just by visual image alone, just from seeing them, people watching. It’s a fovorite past time. Now, I feel totally engrossed in my book. Maybe because I have to have ultra-focus to read at all. But I couldn’t conjure, several hours later, the image of one person I saw today. With each treatment, I seem more detached, and out of focus. I’ve noticed that my vision will focus on something discreet and irrelevant while my peripheral vision spreads too thin to the edges of my visual perception, too bright or too much light intake, or something like that.

Everyone just keeps saying "stay the course" (oh, wait, or was that Gee Dubuya?). I feel pretty confident in the procedure when I'm feeling better, and totally discouraged when I'm back in the dumps.

Sunday, December 18, 2005

Miserable night, more miserable morning

Miserable night, more miserable morning. I was pretty down last night, mostly about a Xmas party Melissa went to (without me). I was invited, of course, and she would have loved for me to go, but just didn’t want to/couldn’t go. Not terribly sad at the time. I’m getting worried that ECT isn’t working, and what that means for the future. Took 1mg alprazolam, which didn’t seem to touch the depression.

This morning, I woke up sad, which is very unusually. I almost always wake up pretty neutral. I just laid in bed and cried. I really didn’t want my family to know how I was feeling. They are all trying so hard for me, and I feel like I’m letting them down. Everywhere I look and everything I see rubs in my face that it’s the holiday season and that people are happy and enjoying each other, and that I’m being cheated out of another year of those feelings and those good times with my family and friends. I find myself thinking that I just want to enjoy one more Christmas with my kids before they are too old to appreciate it.

Very discouraged and afraid. Meds don’t seem to work, and if ECT doesn’t, then what? I’m going to ask the doc to move to bilateral ECT tomorrow and see if that yields any results. These treatments seem to clear the depression for about 30 hours, and then it returns. It seems to be returning at a slower rate (not the crash and burn relapse I had at first), but I don’t think the valleys, the bottom points, are any less deep. I really have no motivation to do anything today. But a full day of self-loathing and misery just doesn’t sound all that enticing. It might be a long one.

Saturday, December 17, 2005

A snowy day...

This morning I had “the 1000 mile stare” and I couldn’t shake it. At one point, I was staring out the window at a thawed spot in the snow covered road. It must have been 100 yards from the window, but it consumed my entire focus. But what I was really watching was all of the snow falling in my peripheral vision. It’s a sensation like being really stoned, but without the munchies (actually, without much appetite at all). I’m not noting any real memory problems, other than the immediate short term things (I usually will make a mental list of things I need to do and then get up and do them. My list capacity right now is about one thing, and the rest get lost in the haze.) My mood has held pretty well today. My son is home. He’s hard to be around all year, but around Christmas, he’s very hard to be around. He has the same problem most adolescent boys have: He forgets to think before he speaks or acts. Now, amplify that problem 100 fold for his emotional condition and you have a loud speaker screaming “INAPPROPRIATE BEHAVIOR” everywhere we go. Nonetheless, my mood has been pretty constant today. My wife is going to a Xmas party tonight with people in our neighborhood. People I used to socialize with too. I’m a little sad for her that she has to go to things like that by herself. Social events are not something I have ever been excited about. They are always uncomfortable for me (outside of a very select crowd). But at one time they were tolerable. For the last several years, I just haven’t gone at all.

I feel like I’m walking a tight rope. I can feel my mood slipping once in a while and I find myself thinking about my anti-social behavior or work or money or my place in life. And I have to keep reminding myself to let those things go, for now, and get my head under control. I’m still confident that those better days are coming, and that ECT will play a huge part in that recovery of “self”. If I can just be patient and let it happen.

Friday, December 16, 2005

Treatment #5 in the rearview mirror

It was a very irritable and nervous morning. I’m becoming discouraged that the effects of ECT seem to be wearing off about 36 hours after each treatment. Although, the “wearing off” doesn’t seem to cut as deeply now. This time had the added element of nerves over the breathing difficulty. Melissa wasn’t at the hospital at first today. I was in a horrible mood by the time I got there. Then, I had a really unskilled nurse trying to do my IV. If you can’t find a vein in my arm, you shouldn’t be doing IVs. By the time I had an IV (which another nurse wound up doing) and Melissa got there, I was in pretty bad emotional shape. I laid in the bed in pre-op for a long time, just trying not to break-down, but wanting to let go a major depression cry loose.. I talked to the ECT nurse, my doc, and the anesthesiologist about last time. All of them assured me that I was monitored and that of everyone involved in the procedure, I was the most oxygenated at a 100% oxygen saturation. My doc said I could have not breathed for 5 minutes and still been at 80%. The anesthesiologist said that the sensation I had last time was not unique. A lot of people come out of the anesthesia a little bit before the paralytic wears off. The result is waking up and feeling really weak or unable to move. In my case, she said I probably needed to or tried to clear my throat and the muscles didn’t respond. The anesthesiologist gave me a benzodiazapine this time, after the ECT, to keep me from waking up so fast and abruptly. They also gave me Toradol pre-op today in an attempt inhibit the headache. It didn’t work.

I have officially crossed that age line after which it begins to freak you out that the people in whose hands you place your life for medical procedures are younger than you. I think I heard the anesthesiologist say she had to hurry home today to finish up a book report and her algebra homework. She looked SO YOUNG! And its funny how two weeks ago I was on the verge of ending my own life, but I can get totally worked up over thinking I might have a problem breathing while coming out of anesthesia. Irony.

Everything went as planned today. Another good seizure. My doc promised to get me a print out (as soon as she could get a nice clean one) of my EEG during seizure. A lot of time there is a lot of “artifact” in the readout, resulting from movement of and around my head during the procedure. A good seizure will show nice even (in spacing and amplitude) spikes and valleys of activity, and then a rapid settling as the brain gets itself back under control. This regaining of control is where the therapeutic effect comes from.

We used etomidate (36) and 120 mg succynylcholine (paralytic) again today, preceded by lydicane to prevent IV pain as the anesthesia enters my vein. I have no memories between saying “good night” as the etomidate sucked me under and waking up in recovery. As it should be. The 2mg of versaid (benzodiazapine) did its job. Seizure stats: 23 seconds peripheral; 61 seconds EEG. Right in the range desired. Headache was a little bigger than last time. The fentanyl (2mg) didn’t touch it, but the 8mg of morphine that came next took care of it (and every other care I might have had, as well). They also gave me a percocet (.5) for the ride home. After the initial headache, there has been no pain. But I am totally wiped out. It’s a major effort to type this entry, but I knew if I waited much of the detail would be lost.

I’m glad to have this one behind me with no weirdness to worry about until next time. My doc is on vacation next week, which was a shock. Her partner will be doing my treatments and, possibly, moving me to bi-lateral. I’m not sure how excited I am about making that move with anyone but my doc, but I can deal with that if it happens. For now, I need to deal with being REALLY strung out from the cumulative effect of another ECT mixed with the pain meds. Bed time.

The battle rages on.

The ‘wrasslin’ continues. Yesterday was ok, much better than the crash and burn of last Thursday after my first treatment, but they seem to wear off after about 36 hours. Last night I found the demon back in my head, telling me how much of a burden I am on my family, and that I’m lazy and not working and worthless. Even if I can manage to tell myself its not true, the demon always seems to win. I am very nervous about today because of the “breathing” thing last time. I also suspect that my doc will want to switch to bilateral ECT with this treatment or maybe the next. The whole process is scary, and every little change just adds to the anxiety.

Scheduled for #5 at 11:00. I’m riding with a neighbor today. Melissa has a meeting at my son’s school that can’t be missed. She should be there before they take me to the OR.

Thursday, December 15, 2005

Treatment #4 seemed to hold

I slept like the dead last night. I’m usually up until 10:30 or 11:00. Especially now that I’m not getting up early to go to work. I was out cold at 9:15 or so, and didn’t move until 8:00 this morning. Having seizures is hard work. I woke up thinking about the “having trouble breathing” thing from last treatment. Its been on my mind all day. I have totally spooked myself over what is probably nothing. For all I know, the same thing has happened during all treatments, and I was just aware of this one. I will mention it to my doc tomorrow. I trust her and her team. Maybe just not quite enough anesthesia and I was awake before I needed to be. Once I woke up today, it seemed easier to get out of bed. I noticed my morning being blurry, but in a brighter sort of way. I can feel my mood slowly lifting, as my focus slowly wanes. Maybe there is something to that old saying “ignorance is bliss.” My state of consciousness is definitely changing.

I use the local coffee joint (to remain un-named until they agree to pay endorsements) as my barometer. Before, I have been aware of others and their interaction. I was outside looking in. I was annoyed by people doing nothing more than carrying on their lives. Annoyed by people who were doing nothing to annoy me other than existing. Now, I seem to be outside looking “through”. I know those people are still there, and they haven’t changed what they are doing. But it bothers me less. Things seem, in general, to be bothering me less. I characteristically feel time pressured at all times. I set this schedule in my head and if I get just a little off schedule, I get anxious. That anxiety grows and snowballs all day, every day, usually. Now, the time pressure is off. Maybe it results from not going to work, or less anxiety in general, but even with those changes, something else has changed. It seems that my consciousness has had, for some time, a constant and uniform slightly putrid smell or bad taste or unvarying anxious annoyance to it. Now, that is dulling. There is just less annoyance as I become less connected to everything in my environment and as I focus (out of necessity) on only the important parts of my surroundings. I don’t feel dumb or unable to think, just disconnected in a way that I have never felt before. Depression leaves me disconnected, but in an “I don’t care” state if mind. Now, I care, but I’m not fretful and I have a general feeling that thinkgs just might work out ok. That is a new view-point for me. I know I am more spaced out with each treatment. But if spaced out is the price for leaving behind the constant nagging annoyance and anxiety, which always leads back to the same end (depression), then it’s a price I think I am willing to pay, even if the spaced out condition remains. I’m beginning to think that the concept here is to slowly stretch my mind out so that its out of focus and unable to worry or harass me, time to give me a chance to regroup. And then to slowly let my mind begin to heal, to rebuild, and this time, to structure some things correctly which were poorly structured before (e.g. my perception of my environment and the way I react to stimuli). Maybe as the focus returns, the negative mental habits will stay away. My alertness, anxiety, awareness, and need for control of everything, as if on a dimmer switch, are being turned down.

I still have trouble with little details like “did I take my meds?” and “today is Thursday?”, but otherwise, while my focus is lacking, my memory seems to be working. I keep having “oh shit” moments, before I remember that I DID remember to do the thing I was “oh shit”-ing about. Some parts of the last week are hard to color with much detail, but there doesn’t seem to be anything significant missing (or maybe there is and I don’t remember it should be there!) I’ve been referring to the blurry parts of the last week as a “memory smear.” Its all there, and if I take the time to sort it out, I can. But in its current state in my head the colors are a bit jumbled.

I do find myself a bit defensive when I feel I’m being treated like an idiot or like a child. I have been short with my family a couple of times in this regard. I know they are just watching out for me, and it has to be frustrating if it feels like information is being conveyed to me, but its not sinking in. I think that is pride clashing with what is happening to my head.

I went to the Christmas Program at the residential treatment center where my son lives today. I always leave there sad, but with a new perspective. The place is full of kids that no one wants. Throw away kids. Most of them are in the foster “system”, but with no where to go but where they are. Sure, they are emotionally disturbed, most of them, but due to physical and emotional abuse. Then there are the few, the minority, there because they share the same problem, but from a purely brain chemical stand-point. That minority, the ones who have homes outside of the “system” stand at least a chance of succeeding in the world. The rest of them… THAT is why, WHEN I go back to the practice of law, it will be for purpose. It will be to help people like those kids. Somebody needs to.

Wednesday, December 14, 2005

They just keep getting better....

As I was leaving for treatment today, I remembered that last time, in recovery after waking up, I had to keep reminding myself to RELAX. I kept noticing that I was flexing the muscles of my back, legs, shoulders and butt into a constant tight contraction. Strange. I would remind myself to relax, and realize how good that felt, and then moments later I would be tight again.

Had another “super” seizure today. Peripheral was 23 seconds and the EEG was the best yet at 74 seconds. According to the leading science, up to 90 seconds is ideal, and they start trying to chemically end the seizure after about 120 seconds if it hasn’t subsided on its own. I mentioned to the anesthesiologist the pain from the etomidate as it entered through IV last time. The anesthesiologist decided to give me a little IV lydicane (local anesthetic) to numb the area before the etomidate. Worked great. No pain. Just remember my peripheral vision melting away in this strange static/white noise manner. I woke up BEFORE I made it to recovery this time. And that freaks me out a little. On top of that, I’m pretty sure I was having some sort of respiratory distress when I was waking. I could swear I remember feeling like I couldn’t breathe and having this “I’m suffocating” feeling while they were rolling me down the hall. I very vaguely remember hearing “just relax and breathe.” Once I was in recovery, I remember this gentle cough for quite some time. Of course, all of this breathing memory could be a dream, a result of meds, or a perception left over from something else that was really going on. I will be sure to ask about it on Friday. The headache today was markedly worse. I didn’t wake with it, but it hit like a ton of bricks very soon after. I didn’t have to ask for pain meds for it. The nurse could tell from my face, I guess, that I was in pain. They started with 2 mg of Fentanyl , split into two 1mg doses. Those worked for a very short time, but its such a short acting drug and the pain was big, so it bled through pretty quickly. Next, we went to morphine, 6mg split into 4 mg and 2 mg. The anesthesiologist ordered Delaudid also, as a further back-up. Delaudid is a heavy hitter. I decided that the morphine had done the job, and to save the back-up plan for when I really needed it. 6 mg of morphine is a train load of narcotics. I was, to borrow from my favorite band (Pink Floyd) “comfortably numb.” The doc also added a dose of Toradol to the mix. Its an anti-inflammatory which would work on the headache a little longer and help the jaw pain as well. One thing’s for sure, they aren’t shy about medicating for pain after ECT, which is good, in my opinion. Beck score today was a little better, 34.

This seizure has really seemed to knock me on my butt. I’m up, moving around, talking (maybe talking a lot), and as my wife put it (while on the phone with someone else), “he’s pretty out of it, but he’s happy!” And she’s right. Despite being really out of it, very blurry and a little unsteady on my feet (and I think all of the morphine should have metabolized by now), I really feel pretty good mood-wise. I won’t get my hopes up too high yet. We’ll see how this train wreck looks in twelve hours.

Day of Treatment Four - Perceptions of Life

I can’t speak for all people, but I know that I have an amazing ability to adapt and accept as “usual” or “normal” the circumstance sin my life as they change and evolve. My daughter broke her arm last night playing basketball. Today is a huge mess because not only is she now operating with one arm, her injured arm is her right (and dominant) arm. She’s finding out how important that other arm is, and its something I’m sure she has never considered in her short life. But, by the time the cast comes off, she will have learned to deal with things as they are. Having two hands again will be a luxury and she will have forgotten how easy some things can be that were difficult before. Similarly, my son is, as I’ve mentioned, mentally ill. People comment frequently “Oh, that must be so hard, having an ill child.” That comment always strikes me as odd. It doesn’t feel “hard”. It simply is what it is. Its part of my life. At first, it was upsetting, traumatic, even. Now, its part of my world and it would be shocking if it were any different. We build our lives, our beliefs, and our values to a great extent around our circumstances. Same holds true for depression, I’m sure. I am used to feeling the way I feel. I have grown accustomed to being unhappy, unfulfilled, and hopeless all of the time. That’s just how my life is. And I know that those perspectives won’t change over night, even as I get better from this treatment. Those are ingrained patterns of thought and perception and expectations about what the world hold for me that will take as long to change as they did to create.

One of two things, or something on a continuum between two things, has begun to happen, however, over the last 36 hours. (1) I have gotten used to being dazed and confused by the treatment, and to operating in a slower mode. I’ve begun to accept it as the “norm.” (although my irritation tolerance is still low if I feel like I’m being treated like an idiot or a child); or (2) things have started getting better. My outlook is better, and I have some enthusiasm. Maybe I’m being hopeful. I’ve been guilty of false hope in the past regarding this illness. But maybe not.

I had the pleasure yesterday of running into someone I used to consider at least an acquaintance. Not someone I longed to hang around with, but someone with whom I was cordial, social in another life. Our wives are friends and social. His perspective, I have learned, with mental as well as physical health, is that medicine is unnecessary. He has the “take a Tylenol and go out for a good run. It will feel better” approach. He even has more than the high school education that Tom Cruise has. Fear breeds ignorance, and ignorance fear. They are a very bad mix which seem to build upon themselves. People will have perceptions, again, based on life experience. For those having the luxury of or choosing to ignore or deny or belittle or denounce mental illness as something less than real and terrible and life threatening, I have but one wish this Holiday Season. I wish that they be allowed, through life circumstances, to stay ignorant and afraid and unenlightened if that means one fewer person has to suffer this existence or has to learn through experience what mental illness is about. And should they have occasion to have their eyes opened to reality (karma makes its way around to us all, at some point), I can only hope for them that they have good people around them, in their lives, to help them through it with compassion. I have been truly lucky in that regard.

All set for a 1:30 ZAP today. #4. I have only 2 real data points so far, given that my first treatment wasn’t a “real” one (titration), but the treatments have gotten increasingly physically and mentally demanding and draining. I am eager to see what this one holds. Wish me luck.

Tuesday, December 13, 2005

A day for a day's sake

I have been asked several times today, by very well intending people "How are you feeling today, Mike?" A question for which there is no answer. I can't answer "I am well." or "I am ill." I can't even go with "better" or "worse." The simple fact of the matter is, I just "am" today. Its 5:00 pm. I managed to complete most of the paperwork for Social Security Disability (just in case I don't make it back to work before my short term disability runs out), and I finished the last 30 pages of a book, but otherwise, I can't really think of what I did to pass the day. Very blurry. My ears still ring, which isn't really of much concern. I have had trouble keeping simple facts straight (like "today is Tuesday"). Doing the Social Security work was the only low spot in the day. It is painful to see how far I have fallen while giving answers about my past employment and income levels and "life". Its hard not to feel badly about one's self when forced to examine your own decline. I just keep urging myself into patience and reminding myself that I just need to sit back, relax, and let the treatment have a chance to do some good. THEN, I can worry about getting back on track. At a local familiar coffee joint today, I realized a fundamental difference in perspective over the last week. Before, depressed, I felt like I was on the outside looking in, and I wanted IN! Now, I'm still on the outside looking in, but I'm not focused on wanting in. Strange, really. My whole life I can remember being so concerned with fitting in that I usually wound up expressing a desire to be different. Like fitting in was too much work, so if I just declared my intent to rebel, the pressure would be lessened. Maybe there is some very basic "wiring" being repaired in this process.

For now, I guess the sit back and be patient (not my forte) approach will have to do. Another treatment tomorrow. Scheduled for 1:30. Take care!

Driving with the brakes on...

Fear not. Not really driving at all. And everyone is better off for it.

I read an interesting article on “” the other day. It talked about how “swearing” or “cursing” works. Great website, by the way. Explains all kinds of things work (or might wok), from car engines to tsunamis to teleportation. The article explains that in most people the left brain is in charge of language. The right brain adds the emotional or instinctual components. Language is a complex function involving the right brain coming up with phonemes (units of sound making up words), and the left brain assembling them into sentences (basically). The theory is that the right and left brain can find itself in quite a power struggle when swearing. The higher the emotional charge (or other feature which might provoke swearing), the more advantage the right brain has in this struggle. Scientists theorize that swear words are stored, not as phonemes, but as whole word units. This difference makes swearing a function that could be performed solely by the right brain (the emotional side), without the left brain’s help. The ECT I am having, so far, is right unilateral ECT, meaning that that electrical stimulus is being used on the right hemisphere only (again, where emotion is thought to live.) Who cares about all of this? I have noticed that my reaction to stimulation in my environment, irritants, frustrations, etc, has changed over the last week (noticeably.) Where before I would have been very prone to become very frustrated at simple things and “resort” to swearing, I might get frustrated (although that tolerance level seems to have been elevated at times), my choice of reaction is different. My choice of words has changed, become more “thoughtful” in that my choice of word and tone are more managed. Could it be that with my right brain getting slapped around three times a week, my left brain is able to overcome some of the advantage my right brain enjoys in its use of profanity? End of anecdote.

There are many metaphors for how my head and body feel today. It took serious planning to get all the way out of bed today. I was wiped out by the treatment yesterday, and slept good. I started to get up several times this morning, and would find reason after reason (i.e. a new section of the “Today” show would start) to delay. I’m very unalert and distracted. Feels sort of like I’m not really part of my world. Like a hamster in one of those acrylic balls they run around in outside of their cage.. I’m in my world, but somehow detached. I guess as long s no one kicks me in the “ball”, I’ll be ok (yeah, yeah, bad pun. What did you expect from a guy in my state of mind?) I don’t feel depressed at all, not unhappy, not worried about the future. Not happy either, and not looking forward to the future. I find myself slipping into that stare or trance people fall into when they are staring at nothing and thinking about something inane (I like to think of that as my brain going to “screensaver”). I’ve noticed, since yesterday, that there are things I can’t remember, and they fall into two classes. Class I are the things I probably shouldn’t be able to remember anyway, like the old man’s name who lives a block behind me and two houses over, and whom I’ve only spoken to once. Before, I might have been able to dig some clue out of my database to piece together a name for that guy. But probably not. Then there is Class II. The things that I know I should be able to recall, things not intimate to my daily life, but immediate enough that they should pop back into my memory when I need them. And they are there, but they seem just behind a dark filter, like a window sheer. I can see the silhouette, but I can’t make out enough detail to bring the memory forward.

My wife said I looked bad all day yesterday, like I was drugged out. I felt that way too. Over all, today, I notice less rigidity in my thoughts and a need for less structure and routine, less of a need to be in total control of how every little aspect of my day goes. I think this might be what people call “relaxing.” And it occurs to me that I’m not sure that I will know “happy” should it come back into my life. I will notice the absence of “unhappy”, but the gap between “happy” and “unhappy” could cause me perceptual issues.

Monday, December 12, 2005

Now we're getting somewhere.

This entry will, no doubt, be very stream of semi-consciousness. I’m finding it hard to even type. I’ll just let it flow according to notes I took over the course of the morning. I’ve begun carrying as little note pad with me (“This is my brain. This (the notebook) is my brain on ECT. What were we talking about?”) Treatment #3 was this morning. My procedure time was 9:30. I was to arrive at 8:00. Of course, I was to have no food or liquid after midnight. No problem, given the time of the procedure. I was also not supposed to have alprazolam after noon yesterday. I had a little last evening at 5:00 just to take the edge off.

I can tell that my bad mood, or maybe just a bad disposition, is back. My wife and I seem to not communicate well or disagree or butt heads when this is occurring. When it worsens, I just get really quiet with a very furrowed brow. I tried to shake the negativity, but it was like a constant annoyance or irritation. I think I mentioned previously that each time I go in, they have me do a Beck Depression Inventory. It is a 21 item questionnaire in which I rate my feelings in different areas overt the previous several days (e.g. “I feel sad: none of the time (0); some of the time (1); most of the time (2); all of the time (3)) and points are assigned to each answer. Max score, as you can see, is 62, at which the world would be a worse place to live than anyone could possibly imagine. My initial Beck was 36 (which my Doc said was “very depressed”). My Beck before treatment #2 was 40, and before today was 35. Insurance has approved 6 treatments, with consultation to follow those before another 6 are approved. I know how to score the test, which gives it an inherent bias and vulnerability to manipulation. I have been thinking about these things. From a “getting insurance approval” perspective, is it better to continue to have high Beck scores so that insurance thinks “he’s not better yet, we need to approve more treatments,” or improving Beck scores so that insurance sees progress and approves more treatments. (Not that I would manipulate the results in this way…I DO want to use the tool correctly and to get better.) This thought only comes to mind because I inherently don’t trust insurance companies and the “system”. We all know its broken and no one who is in a position of power to effect change can or will.

We were on time to Porter, but my wait was longer this time. The previous two times, I hadn’t even have had time to get the bed warm before I had an IV, had seen the doc and anesthesiologist and been whisked off to the OR. I think I got spoiled the previous times. I was rolled out 30 minutes late and it seemed like much longer. Things don’t seem as organized and on schedule in the morning (just an observation). I didn’t feel at all nervous today. It was a huge difference from last time. Practice makes perfect, I guess.

Had they used today’s OR on my first visit, I would not have made it all the way there before jumping off of the gurney and running away. The first couple of times, the Ors were close to the prep area and they were new, white, bright, and looked like a place I might want to have an electrically stimulated grand mal seizure. Today’s OR was through a winding route of hallways. It looked like something you might find in the basement, with the equipment they had long since replaced with better stuff. It was gray and uninviting, and didn’t seem as professional of “ready” (and it wasn’t cold…ORs are supposed to be cold!). Details… We switched anesthesia today, form Brevital (nurse said “240” not sure of units) (generic form is METHOHEXITAL) to etomidate (nurse said 20 + 10, again not sure of units). Doc said that they were giving me a “hefty dose” of Brevital to get the job done, and that Brevital can inhibit seizure duration and increase threshold stimulation required. She said they usually start with Brevital and wind up changing to etomidate. Anecdotally, she said she thought they should just start with etomidate. I didn’t get the WAWAWA sound with this med. Instead, I got a nasty throbbing in my hand where the IV was inserted. I mentioned it to the anesthesiologist. He said “give it just a second, and it …..” Lights out. I’m pretty sure the end of the anesthesiologist’s sentence was “make you younger and more handsome.” Liar.

I did note a lesser headache this time, but I took the fentanyl anyway (just in case.). I remember feeling much more strung out and spacey this time. Procedure took about the same duration of time. I rolled out of prep at 10:00 and into recovery I at 10:22. The Recovery II nurse made me eat something this time, so she could give me ibuprofen before I left the hospital. She brought me toast with grape jelly. It had no flavor whatsoever. My mouth was bone dry, and my throat hurt like a case of strep throat. It still hurts some 5 hours later. Drying to swallow toast, of all things, even with juice was like trying to swallow half a bag of cotton balls. The jaw pain continues. Nothing serious, but persistent.

Seizure stats Treatment #3: Peripheral – 27 seconds; EEG – 57 seconds. Doc referred to treatment as a “great, solid seizure” (is that a good thing?) with nice rhythmic amplitude (the valleys and spikes in the EEG were evenly spaced and of the same depth/height across the board) with a nice flat EEG at the end. Again, I remember the abbreviated sentence from the anesthesiologist and then “You’re waking up, its all done.”

I’ve noticed that my ears ring after treatments for some time. I can only really hear it when ambient noise is low. I notice the same thing when I take alprazolam. I’m finding it harder to remember what I have written in this blog on previous entries, especially about myself and my history. My wife says there has been a noticeable difference in my memory from treatment #1 to #2. Her reaction to this treatment (#3), which seems to have hit me hard, will be interesting. After the first treatment, the roads in my area were a bit icy. Rounding corners, a couple of times I got the sensation that we were sliding sideways. I haven’t noticed that equilibrium problem since that first treatment.

I got home and tried to sleep. I wasn’t sleepy, just wiped out and mentally tired. I think rest is in order.

Sunday, December 11, 2005

Looking forward to Treatment #3

After the dread and anxiety over treatments 1 and 2, I'm looking forward to numero tres (maybe its the fentanyl party afterwards.) This one is early Monday (tomorrow) at 9:30 (be there at 8:00 so I can sit around and get nervous.) Late day treatments are tough. Not eating all day just adds to the stress level. Today has been a pretty successful all around day. Still having some "good" moments which then flatten back out or get consumed by a doom and gloom period. my jaw is still sore form Friday's treatment. I'm beginning to think that "sore jaw" is just going to be part of the game.

I still find that if I think about going to work, my stomach gets tight and sick feeling and I think about individual tasks I would have to complete. The anxiety builds in a major hurry. I run this little litmus test on myself once a day or so, just as a gauge of where my head is and what stress level I might really be able, right now, to bear. By the time I took my leave of absence, my stress tolerance was near zero and I couldn't fathom going back to that job, ever. I haven't traveled far from that place, yet. I spent an hour or so today filling out the online forms for Social Security Disability. I worked until I got bummed out reading my psych history (which my wife has done a remarkable job of keeping up to date for me.) Looking back, in detail, over the last 5+ years wasn't uplifting. There are many parts which my memory had lost even before ECT began. Maybe selectively, maybe from plain old degeneration from the illness. I just keep telling myself "Give it time, Mike..."

Sunday, 2nd day after treatment 2

Seems like I've been doing this longer than 2 treatments already. And things are just getting started. Today, so far, has been good. No crises, no overwhelming feelings. A couple of observations. First, since I was a child, I have been plagued by canker sores, mouth ulcers, whatever you want to call those little white sores in your mouth (some get them, others don't) that sting like hell, usually grow form tiny to large and then vanish or come after a cut inside the mouth.. Docs have told me and I have read that they are (i) stress related, or (ii) viral, or (iii) they don't know what causes them. They come more in the winter than summer, and usually when my immune system seems suppressed from illness. I took a mineral, lysine (sp?), for a long while, which seemed to suppress the sores, but didn't make them go away altogether. They usually last about 7-10 days. On Lysine, only about 4 days.

I haven't had a sore in nearly 3 years. I can't remember the last one. I've had two ECT treatments now, and I have 2 sores, one inside my top right lip and one inside my bottom right lip (right unilateral ECT, remember) which match up with respect to placement in my mouth. I have also been on lithium for about 3 years, but off lithium for about 2 weeks per doc's orders (always take your meds!! (Melanie!)) Too much there for coincidence.

Usually, in public, everything going on around me is part of my immediate world. I don't/can't shut parts out and consider them background or ambient activity. Especially the super annoying people. That seems to be changing today. I was in a busy Starbucks reading (frequent activity) and noticed how much more things seemed to be background versus foreground. My concentration is terrible (read the same line several times often), but I seem to be operating in a smaller "circle of concern" (term from "7 Habits", Stephen Covey)

I also notice that, where a week ago, my emotional world was neutral or flat with moments of sadness, despair, pessimism and dread. Sometimes those moments outnumbered the neutral moments. There were no moments of optimism, happiness. Now, there are some. Not many, and not often, but I've recognized a few of them. They soon get gobbled up by negativity and depression, but that is a "habit" that may take a while to break. I'm glad to see that those good moments might, after all, still live in my head somewhere. And maybe I'm tapping into them.

Another dark poem form the works of "me":

Battling the Beast

There are miles behind me
And a handful await
The Beast is before me, hungry, awake

I’ve put in my time
And suffered the pain
Preparing for this day

The struggle begins slowly
But the fight will ensue
The Beast will attack me physically and mentally
As I wage my own attack

In my own mind
Like with all things in my life
There are but two options

Defeat the Beast
Or die trying
There can be no retreat, no failure

In my heart, in my soul
I hope I have the strength to try that resolve
The test will come
Ready or not

Push to the edge of reason
Rest there for the mortal combat
Then to the Summit and back to reason

The battle will rage,
Slowing, growing more violent, more demanding
As the altitude increases, and air and energy wane

And even with the Beast beneath and behind me
The fight is far from over
Battling the Beast is more than gaining advantage
It is surviving the aftermath as well

As I descend its lair
Into trees, into air
The Beast will continue to rip at me, to tear

For while the Beast can be taunted
It will never be tamed
Even in victory, there is defeat

And the obsession, the darkness
Once discovered
Pleads with your soue interminably for another battle
On another day, on a new battleground.

Saturday, December 10, 2005

Calmer afternoon

Post-nap (and alprazolam), things got better. Played some guitar (I’m a hack, but it occupies my mind) and walked around a mall by my house. I can't drive, I have to do something. I'm finding more and more little intermittent holes in my memory and/or vocabulary. Finding it a little harder than before (which was also getting difficult) to remember what I was going to do between deciding to do the thing, and getting somewhere to do it or write it down. I'm under 40, so I can't even really blame age for that. it didn't use to happen! I cooked dinner for myself and kids. Wife went to a xmas party. I'm glad she gets out, even if I can't/won't go.

Tomorrow should be interesting. Since starting treatment (remember, only 2 so far), I haven't had a second day between treatments (went Wednesday, skipped Thursday, and went Friday.) Sunday will be day #2 off. Will mood get better, or worse? How much control can I have over that? Positive energy, people...positive energy.

Day after Treatment #2

I had to get up by 8:00 today to go my daughter's basketball tournament. My son woke me up. I was still sound asleep, which is unusual for me at that time. I was foggy, but hungry and ok. The tourney was pretty overwhelming for a slow mind. Too much noise and activity to process. it was a 3 on 3 tourney, half court. There were 4 games going on all the time. Usually, I think, my mind calibrates to handle the flow of information on its own. Like a hose without a nozzle. The flow into the hose and the flow out the other end are under the same pressure. Today, it felt like I had the nozzle attached. Information was getting jammed up and being processed under pressure at the end of the hose. The result was an increasing irritation level and anxiety.

We were at the gym from 9:15 until 1:00, other than 30 minutes for lunch. My appetite seems pretty low. Didn't eat much breakfast, and not as much as normal for lunch. I was glad to get home and lay down. I woke up about 2:30 with a left side headache. Took .5 mg alprazolam and some ibuprofen. I think I'm learning that I need to take it easy the day after treatment and let my mind rest.

Friday, December 09, 2005

Two down...

Seizure #1 stats: Last time, my Beck Depression Scale was 36. This time, 40. Higher is not better. But as I've mentioned, I was pretty down last night and some today. The "real" seizure (there's a word for it, but I can't remember it) lasted 20 seconds. The EEG readout showed 62 seconds of seizure activity. Doc said that I seized at the first setting on the machine, meaning at the lowest electrical stimulation. (remember this was the titration, discovering what my seizure threshold is. Less stimulation, less memory deficit (usually.) Today, she called it a "very nice seizure." Whatever the hell that means.

I was less scared today that Wednesday...but ONLY a very little. I didn't consider jumping off of the gurney in my hospital gown and fleeing like last time, but I certainly contemplated how much I did NOT want to do this treatment. I was pretty teary while in pre-op. I talked to the Doc before-hand about leg pain last time, and then to the anesthesiologist. He said that there is a med they can give you pre-procedure which can prevent it somewhat, but you wake up slower and are much more unsteady for a while. The paralytic actually causes all of your muscles to “fire", causing a twitch all over like a shiver. Muscles are then unable to "fire" again for long enough to get the treatment done. The other med prevents that shiver. I opted to forego, given that the muscle soreness is totally gone today anyway.

They run the treatment like a machine. There hadn't been any warning either time. One minute you are sitting there trying to be calm, and the next a nurse says "Well, I guess were ready to go." Both times I've gone in early. Today it was almost a full hour (someone ahead of me had made the mistake of eating a "bite of a candy bar" about noon, and then confessing to it to a nurse. No solids food after midnight! So they delayed her treatment until a six hour digestion window had run. Today I rolled out of pre-op at 2:03 and was in recovery at 2:22. In the OR, one nurse puts a cuff on my leg, one hooks up my pulse ox monitor, one puts on the BP cuff, the doc puts on the electrodes, and anesthesiologist does his thing and puts the O2 mask on. Oh, and another nurse lays a warm blanket over me. She's my favorite because its freaking cold in there!. Then the anesthesiologist tells me he's injecting the sleep med. Both times its been about 5 breathes before the IV drug hits home. Both times, the same WAWAWAWAWA noise has sort of crept from a whisper to siren volume. Today I heard myself say "here it comes."

The greatest thing in the world is being that scared, and then, just as you put the first hook into consciousness, a voice says "Hi, you're all done. Just rest." Today, there was a major headache after a few minutes of awakening. I have no clue how many minutes. Somehow, again, form 2:22 until 4:30 went by in a flash. But the head pain was intense. Like an ice pick in my right temple. I am having "right unilateral" ECT, meaning current run through the right hemisphere of the brain only. If this method works, it causes less memory issues. If it doesn't work, or is less effective, then bilateral ECT is used. Current run from one side of the head to the other. Right unilateral, thus the right side ice pick. Thankfully, they make WONDERFUL main meds for just such times. They gave me 1.5 mg of fentanyl in IV. It was like diving into a warm bath. Oh yeah, and the headache went away. The headache came back sometime later, and the nurse hit me again. I never knew headaches could be so great.

After who knows how long in Recovery I, I got moves to Recovery II. My wife can come back to see me at this point. I really felt much better after this time than last (other than the headache). No leg pain, but my jaw is still a little stiff. I was talking to the nurse (same nurses as last time) in Recovery II about last treatment. Her comment was "I'm surprised how much you remember from last time. Many patients get here after #2 and don't know who I am.

I wasn't in Recovery more than 30 minutes. Much more steady on my feet than last time, although no less foggy. Maybe more so. I've had a couple instances since leaving the hospital when I have been talking and I reached into my memory bag for a word or memory form today or yesterday, and the bag was empty. To be expected, I suppose. If that is the price to pay for ending the misery I felt last night and for much of the last 5 years, its a bargain.

My Doc came into Recovery I to see me, see how I was doing. She was surprised how quickly I was awake. She said I started coming out of the anesthesia not too long after the procedure was over. The anesthesiologist and I talked pre-op. He asked about how hard it was to wake up last time and how I felt. He told me that he tries to give me no more than I need to keep me out long enough, but enough to leave no memory of the event and a safe margin for error. I stressed that I would rather be groggy than have any chance of having the lights still on when Dr. Frankenstein throws the switch ( I put it more delicately than that, of course.)

Haven't eaten since 9:00 last night. Its 5:24 now, and I'm not hungry at all. I guess that will come. Time to crash.

Day of treatment two

Man, last night was a tempest. And it came so fast. I think as the first ECT started to settle in, the depression came back with a vengeance. I took a mg of alprazolam last night about 7:00. I wasn't supposed to have any after noon, but it metabolizes fully in about 8 hours. And I wasn't sure I was going to make it through the night without it.

Most of the fog has lifted from Wednesday's treatment. I still kind of have this "DUH" feel about me, but I'm very functional, changes a fuse in one of the cars, filled out a form on line, etc. I have to remember to ask today what my titration level was (how much juice they gave me to induce seizure last time) and how long the seizure lasted (which they can see from the EEG.)

I noticed last night that when I cry, my ears hurt like I have an ear infection. Odd. No soreness today. Jaw, calves, shoulder blades are all fine. I'm a bit nervous about today, less now because I know what to expect upon waking up, but still a little from the dosage being increased 600%. I have been shaving my head since June 3, 2000 (day prior to the Rock n Roll Marathon in San Diego.) I've been letting it grow now for about a month. My wife hates it. I hope it doesn't turn into a 'fro after the treatment today!

Since I now know that it was a good thing to write right after last treatment ( I wouldn’t have remembered half of the info had I waited until morning), I'll try to do that tonight as well. Scheduled for 3:00.

Thursday, December 08, 2005

Crash and burn

My mood this evening went from pretty good (albeit foggy) to absolutely miserable in less than an hour. After 5:00, everything in my world was an irritant. I felt horrible about myself and what I put my family through and the pain I cause them by being the way I am. My son, who is also mentally ill, is really bad for me when I’m not well. He's spontaneously obsessive and it drives me nuts. I got upset and yelled at him over nothing, and that just made everything in my head worse. The negativity and self-loathing in my head is unrelenting. This is one of those times when I want, really want, to not live. One of those times when all I wanted to do was cry, and it took forever to get the first tear to come. But then they came in buckets. I think the excitement of ECT has worn off, I ache, I’m not feeling any benefits yet, and I’m still the same old miserable me. I hurt inside and out, and I’m tired of inflicting this pain on those around me.

The Day After, Act 1 Scene 1

I woke up today feeling good. Not blurry or fuzzy like last night. Seems like I needed to "stretch" more times than usual to get awake. Many more times. For those endurance athletes, like an overload of lactic acid in the muscles.

I was wrong about that initial feeling. I am blurry and fuzzy. Slowly, my entore body is getting stiff and sore. Like I did a really good full body workout yesterday. I was sure when I got up this morning that I could drive, no problem. It wasn't until someone drove me to Starbucks and I sat there, in the world, that I could appreciate my state of mind. If you have ECT, take the advice of your Doc: DON'T DRIVE.

I'm a very visual person. I learn visually, I conceptualize visually. I mentally dissect things, inspect the parts and reassemble before making decisions. Its just the way I work, it all happens quickly and smoothly, and it feels like a sharp razor. Today, I have a butter knife. I can't really get my thoughts on one thing and hold them there. Not that things are racing, but the opposite. My mind seems to wander off into neutral if I don't really focus.

I also notice that my internal guidance system is off. Not really off balance, but not on balance either. I was walking in Starbucks, looking to my left at something. I was moving between a display rack and a chair holding a coat and a breifcase/computer bag. There was plenty of room for me to pass, but I bumped the chair. I didn't wipe it out or anything, just a bump. The coat fell off. As I bent to pick the coat up, another bump. Now the computer bag fell and, of course, spilled contents all over the floor. No big deal, but embarassing. Its just one of several little things I have noticed being a little askew.

In addition to general soreness, my throat feels sore. I noticed it when I woke up post treatment also. I htink its really part of my jaw that's sore, but it feels more throaty.

The friend that drove me to Starbucks, Heidi, is really a friend of my wife's. We talked on the way. She commented that she thoguht this was a very "brave" thing I'm doing, very "un-selfish". It doesn't feel that way. Not at all. It feels like a burden on everyone for the sake of making me feel better. I guess I should adjust my perspective. it is a short term burden for the sake of making everyone's (in my life) life better long term.

Wednesday, December 07, 2005

Post treatment #1 - Blurry and sore

If this post is a bit unintelligible, sorry. I’m pretty foggy. Not sure if it’s the anesthetic of the treatment, but I think it’s the treatment I’m afraid if I don’t write now, many memories will be gone by morning.

Got to hospital at 1:15, early. Went back to prep about 1:30. My wife was asked to stay in the waiting room while I “got organized.” Procedure was to start at 3:30. About 2:15, everyone realized that I didn’t get a physical when I was admitted to the hospital last week. My EKG was “abnormal” according to the machine. There was a scurry and much stress (on my part). I had come this far, gotten up the nerve, and if I was denied or delayed again, I was done (probably literally)

Finally. They reached the doc that was supposed to do my physical in the psych ward. I was released so fast, he didn’t get to me. After some review, listening to my heart, etc, he cleared me to go forward.

I’m not sure I’ve ever been as scared in my life as when I was being rolled back to the OR, IV in my hand, and headed for the unknown. The OR, as they always are, was freezing. There were nurses everywhere. I was very scared. Not of dying, or of getting hurt, but of not knowing how I would awaken and this being my brain we were dealing with. My pulse ox was 98% to start. Three breathes after they put the O2 mask on me I was at 100%. The Doc assured me that everything was going to be fine. I’m sure she could read the worry on me. The anesthesiologist told me she was injecting the meds to make me sleep. Sleep didn’t come as fast as I had expected, but when it came, it came like a freight train. I remember this reverberation, and saying “bye bye”. I have this vague memory of sort of waking up being rolled down the hall and asking if something was wrong. The nurse said “Nope, you are all done buddy.” Back to sleep.

When I woke up in recovery, I had the sensation that my head hurt, and I told the nurse. But I’m not sure my head ever really hurt. I might have just expected it to. I dozed on and off for a while. I remember seeing the clock as they wheeled me out of prep. It was 2:51. I asked the nurse what time I got to recovery. 3:11. 20 minutes total. It took a while to get somewhat awake. I’m still not alert (its 5:48 now). At first, I tried lifting my hand. It weighed 1000 lbs. My head weighed more. Slowly, that went away. The only things that really were uncomfortable were my jaw and, much more, my calves. As I mentioned before, I have run marathons. 26.2 miles will do a number on your calves. The second day after a race, its very hard to walk, no matter what shape you are in. My calves are more sore already than had I run 3 marathons in a row. Given the jaw soreness and calves, I have to assume that they used too little paralytic. My calves, being farther form my heart that most other major muscles, must have seized HARD. I can’t wait to feel them tomorrow. I’m sure my jaw hurts from claming down on the bite block they use to protect your teeth. Again, need more paralytic.

I left recovery at 5:00. Almost 4 hours after I arrived. It seemed like a really fast 4 hours (I’m sure my wife would disagree.) I’m pretty blurry, and pretty slow. Those who have enjoyed major depression will understand when I say that your brain slows to one function, one thought at a time. I’m like that, several times over. My thoughts say “move your eyes”, and then they move sometime later.

Scheduled for 3:00 on the day after tomorrow. Next time I’ll 6x the stimulation.

Day of treatment one

Today is treatment one. The scheduling has been shifted a couple of times. Now I'm not scheduled until 3:30. For the procedure, a general barbituate anethesia is administered to put me to sleep. This means, of course, that I cannot eat or drink anything after midnight of the previous night. With an expected 2 hour recovery and then time to get some food, that's going to be 18 hours or so without food. I'm a big guy. I have a big, gas guzzling engine. 18 hours is a long damned time. Its 12:00 and I'm starving already. After the anethesia, a paralitic is adminstrered to prevent muscle contraction. This agent prevents active physical convulsion during treatment. The procedure uses a cuff on one ankle, restricting the flow of the paralitic to one foot, to allow contraction in that foot. A twitch of one toe is used to indicate convulsion. Today is a "tritration", which means that the procedure will begin at the lowest electrical stimulation. The docs will increase the stimulation slowly until seizure is produced, hold for 1 second, and then stop the stimilation. The next and subsequent treatments are dosed at 6 times the threshhold stimulation noted today. I was told to expect about 2 hours in recovery before going home.

Tuesday, December 06, 2005

Stream of thought

As I was driving around with my son today, many things came to me regarding my illness. I am my most creative self when I am not well. I wrote a novel during a period which I am now sure was a mania or quickly cycling mood. It took me 6 months. I write poetry when I am most depressed. Its dark, ugly poetry. I think I started that thinking if I wrote it down, it would go away. It didn't. Here is but one of hundreds (don't be a critic...I'm no poet):

A Good Rain

Time blankets all
With dust, malcontent, and pain
As the world slips by unnoticing

Needed is a good rain
To wash away the neglect
And bring renewal to a stagnant life

Begging, pleading, forcing
The clouds come
But rain is a rare luxury

In this biosphere world
Protected by this envelope
Of chemicals and kid’s gloves

The drops seldom fall
Those drops that cleanse the soul and mind
That thunder which erases the pain

The storm builds for days
Rolling and threatening
Until the tempest arrives at last

The rain of my soul streams down my face
As I bask in its clarity and rejuvenation
I am lost in the confusion and remarkable revelation

Yet the rain opens my heart
To the release of useless emotion
And brings rest and temporary solace

And allows me to stiffen my resolve
To face one more day
One day at a time
Until the rain falls again.

I have mental illness on both sides of my family, mostly undiagnosed. My mother, no doubt, suffered from depression. She past away, death by alcohol, this past July. My father is treated for depression. Somewhat by Zoloft, mostly by vodka. I have been certain, for some time now and during better and worse periods, that absent some car accident or other anomoly, I will die of my illness (most likely by my own hand). That is, unless I find a way to control it. Following is a day form my almost daily journal which highlights my existence:

Today was different. I could have stayed in bed all day. My body physically hurts today. I noticed the effort it took just to raise a cup to my mouth. As though nothing is going on in my head, except for noticing that nothing is going on in my head. Melissa did her best to get me out and keep me moving. I know she’s worried about me. So am I. But today, that sadness is gone, or very distant. Its not that I don’t care, its that I can’t focus enough to care. I can’t imagine going to work tomorrow. That level of interaction and energy just seems too much. Melissa gave an alprazolam at about 1:00. They help, fast. They take the sadness away within 15 minutes. If I could live my life on them, things would be better. They prevent me, however, from knowing how I’m “really” feeling, and so I resist taking them during the day. All day, my mind keeps noticing these happy families at lunch, shopping, smiling and laughing and “having fun.” I’ve forgotten what that is, and how it really feels. My mind keeps telling me that maybe my “illness” is just an excuse for my lack of personaility. Maybe I really am just the asshole jerk that I act like much of the time. Maybe I’m just too lazy to keep a job or to be successful, and my illness is just a crutch or a cover. I could convince myself of that, given time. I also realize that I always feel like an outsider, the different one. I’ve always been shy, withdrawn, even in college. But I was engaged in life, had friends, lived in the college world of fun and pranks. But at some point I detached from the world and became someone looking in from the outside.

After more thinking and reading on ECT, I know there are some downsides, and I know there are some people for whom it just doesn’t work or doesn’t “stick”. I know its is a controversial treatment, and I know there is no scientific explanation for why it works (hypothesis, but no answers.) I also know that the last 5 years of my life have been a steady decline. I know I am losing my fight with my illness. Even the last 11 months since Porter, my depression has been in check, but my life is completely “about” my illness. I AM my illness. I live a series of daily routines which repeat day after day and which cause me great stress if they are interrupted (ie up at 7:00, coffee, work at 8:30, lunch at 1:00, go home at 5:30, eat at 6:00, hide in basement from 7 to 10, bed at 10. Weekends, insert coffee at Starbucks/read at both 9:30 and 4:00 each day). I am removed from my family and everyone else in the world, and I’m fine with that. Now, after feeling like I fought every day of the last 11 months to get somewhere, to get on top of this “thing”, I slid hard and fast right back to the same place I was before, crying several times a day, sorry for everything in my life and everything that I am not, focusing on the fact that I was an intelligent, driven lawyer who is now a professional nothing, barely supporting his family, and so miserable that giving my family the proceeds from life insurance far outweighs the value that I bring. I want to fucking die. (even through the alprazolam, I’m crying.) Now, back to ECT, how bad can those downsides be? How much worse can things get than being so miserable that on an increasing basis, planning my own death is my leading past-time? I don’t think there is more than one logical choice.

People who have never suffered a deep depression simply can't understand. It doesn't matter if you are a psychitrist or a therapist, you can't get it. 10 years ago, my best friend's father kiled himself. This man was a well respected radiologist, had more money than god, a great family, a great home. I was so astounded, then, about his choice. How could "he" have so much to be down about that he would end his life? Maybe its karma...but now I get it. Explaining the pain of depression to an "outsider" is like trying to explain the pain of a burn to someone who has never felt a burn. Its primal, it cannot be broken down into smaller peices and explained. It just is, and it has to be experienced to be appreciated.

An interesting quote I found today, from a novel by T. Jefferson Parker, "Silent Joe": "everything is the same s everything else, and none of it matters."

I realize that, if someone showed up at my door and said "OK Mike, its all over. You can go back to being the old you again!", I wouldn't have a clue where to start. My wife commented, in therapy, that I haven't been "happy" in five years. Not really happy.

I also realize that I'm not afraid of much. What I do fear, however, is being alone with my illness. What I fear most is not death. There are many things worse. Such as life, wihtout the ability to end suffering. I fear being Terry Schibo (sorry if I misspelled.)

Imagine how you might feel if someone came and took away TV form you today. We all, for the most part, have liveds built on or around TV. It would be missed terribly in my life if it were just suddenly gone and never to return. In ways, I would be lost. Think of the stimulation and the information you get, for good or bad, from TV. I have heard it said that if you never had a TV, and they vanished today, there would be nothing to miss. I haven't always had this illness. I had a TV, and I built a life around that TV. 5 years ago, someone took my TV away, and it hasn't returned. is it different if you are born with and always have a mental illness? In that case, I would know no life other than WITH the illness. Sorry, rambling.

treatment begins tomorrow at 3:30. I've been asked if I'm scared. I'm not. Decision made. All that's left is carrying out the plan.