for anyone auditing the course, this would be a fine blog to skip

sometimes I need to do an entry for me, just to get my thoughts straight about what might be happening to me medically. there are a lot of components.

so...way too fine a detail...though I won't promise a complete absence of personality...just a level of navelgazing that will even bore me reading it later.

yesterday was all good from the outside, all learning which is invaluable, and all not so great from the inside. didn't feel particularly good for most of it, for reasons.

to start with, I didn't sleep. at all, or hardly. 5am I'm wondering what the fuck? because I need sleep worse than ever. what's the body doing now?

about the same time, it occurs to lisa...in a dead sleep, or a troubled one...that we had both spaced my taking my bedtime Dilaudid.

which means, I spaced it. she is on board to help. but it's all up to me, and I know it.

we divide up the pie chart of responses well in times of trouble, do lisa and I. I go right to adrenalin fueled calm problem solving...holding on tight...she goes omigodomigodomigod, then to some shameandblame, then to generating solutions which may or may not have perspective to them. but...if no one did that...it wouldn't be as easy for me to bypass that stage and stay clear. I have designated emotional drivers, who hurt and cry and get too involved and rejoice for me, so I can just keep going. and I need that kind of fanfare...this is no one's walk in the park.

they are also there for me at times I need reassurance and general mommying. oh, yes, and every other second of the day for everything I could need or want, from orange juice to Sky, to the untruth I realize needs to permeate the house, that I am attractive, and have always been.

the answer I came up with - to how not to skip that dose again...is to slightly shift when I've been taking the Dilaudid. it's been four times a day, about every 6 hours, at 8am, 2pm, 8pm, and at the last wink before bed, to make the distance between the night and morning dose as small as possible.

problem is...lisa goes to sleep...I come to bed...I space (once, all told)...and it's not good.

so I think if I do the Dilaudid more with the landmarks of the day...8am breakfast (oh, yeah, I get a hot breakfast every morning), 1pm lunch (which I'd been cheating the 2pm back to 1pm anyway so that the Decadron has less effect on my sleep), then 6pm dinner and 11pm solid night dose, that lisa and I will both still be up, and the time will be specific, etc.

this gives me 5 hour cycles, not so off from 6, and 11pm to 8am to wait at night...but the Dilaudid morphine stuff when I need it, starting to sleep. and mornings...the last part of my waiting for a sleep bus which sometimes gets me and sometimes does not...have been the best feeling part of the day.

so, we'll see. don't want to schedule anything at midnight or 7am...too late and early.

so...I slept some after 5am. but lisa and I both got up tired.

with a 9:15 appointment for Dr. Gore exciting both of us. I had nothing but good to report. the chemo had been well tolerated and was over...I was feeling good and strengthening. we looked forward to lessening the Decadron dose slowly, and other non curative helpful decisions.

from the beginning, as it so often does when something isn't good with sleep and rhythms, it felt like we were brushing the hair of the dog the wrong way.

hassles with the oxygen tanks. hassle getting a wheelchair at the hospital. hassle with the front desk not wanting to do labs before I saw Dr. Gore so she could see them. waiting, waiting. hassle with the oxygen tanks in the hospital. sleepy sleepy.

a great meeting with Dr. Gore, although at Warp Starbucks. tried my best to rev up and be clear and exhaustive. janice had wanted me to ask her...so...i know that there can be periods of increased energy before someone dies...but...have you ever seen anything like this before????

I did say that, but I said after...of course you have. you've seen a lot.

she said it is, however, unusual.

yeah, leave it to me to be unusual. me and cindy lauper.

we'll take it this time, though.

had the best labs experience of my life, which is to say the least. no pain at all from the stick. no problem at all drawing the blood. Theresa is a genius.

I felt a little pressure to take the pleur-x catheter out immediately, from both lisa and Dr. Gore. you remember the tube in my abdomen that was supposed to keep draining the fluid in my right sac around the lung, to give me more breath. it was still in there, but over the last three weeks, we had hardly gotten a drop the four or five times we tried to drain it.

without x ray or c t scan, I felt a strong recommendation from Dr. Gore that it come out, and come out yesterday.

of course, she and lisa are the ones who see it...I can't. and as long as it's in , the risk of infection is there.

I tend to move slowly, and sometimes especially when things could be in my favor. I hate being like Neo in the Matrix movies, where instead of going to a phone booth to travel between the inner and outer worlds, that I have two cell phones with me, the port and this catheter. the person who would most gain if it were gone would be.....me!!! me me me!!! I could shower with impunity, never having to have lisa change that dressing after.

it was like the fanny pack...I felt some pressure to do it before I might have done it, but once done, what a relief!

so I went with the pressure when Dr. Gore got a last minute appointment in IR to remove the catheter. 12:15pm. better than using a whole other day to do it.

between then and the actual procedure...the worst hospital employee encounter of my experience. beyond a little disappointing, beyond not just up to snuff, beyond not making the grade, all the way to territorial, belligerent, and totally wrongheaded in an injurial way.

we were at IR at 11:45am. the word was that insurance needed to ratify the procedure, and we were waiting back to hear from them. it was also lunch, probably for insurance as well as IR.

waiting isn't awful...we asked to be added at the last minute, we can be good about making our end work.

we watched as the oxygen tank ran out and became quiet.

now, I am on 13 liters at home. it's so not a big deal to some folks, so crazily spendthrift to others. me, I feel it gives me every o2 advantage. I have been thinking about going down a bit at home, once the chemo was over. I was at 10 for the trip today.

lisa was beside herself, talking to anyone who would listen about my need for air. we probably both had the visual of a fish out of water...I remembered when Aquaman and Aqualad had to be resourceful to get water after 24 hours out of the sea. but this was somewhere between oversight and emergency already.

the guy who eventually told me that I would not be allowed to sit here and use up "his" tanks like that. he literally turned the tank to 6, and then 4. and he was not to be moved. lisa "went all mama bear" on him....

I had a different approach. I said, you're really willing to contravene a doctor's orders to lower my oxygen?

he said, I'd like to see those orders.

lisa said, have you seen his charts ? do you know anything about his case?

no

I very quietly said, it's hard for me to believe that anyone can just come along and make decisions against a doctor's orders. would you like to talk with Dr. Gore about it?

yes, I'd like that very much.

now, he was the first person we've met in the hospital who not only didn't know Dr. Gore (referred to her as him), but didn't look fearful at the prospect of getting in her way. and my guess is he never ever thought she'd call back. it took about 8 minutes.

"turns out," he said, "you really do need the oxygen."

have a nice day.

yeah, it was every bit as ugly as it sounds. and immaterial to any telling of my story. but this blog's for me, and, ouch, dammit.

I have a strong programming that the more important something is, the more important it is I don't freak out about it, but work for what is best.

also, I am fond of saying...the dog with the smallest yard barks the loudest. now...whose tanks are they, really?

but watching him "man up" and watching lisa mama bear...I was aware that the question was whether I would be dealing with one out of control person, or two. making it two never, ever helps.

I never understood why, with the people I watched backstage at Telluride or at the folk festivals, why they were so over the top friendly. was Mick Jagger? Bob Dylan? it was a convention of the form.

now I know. those people needed you, whoever you are, on their side. they needed not only to leave a good impression, but to seem like someone you'd go the extra mile for.

I relentlessly good vibe my medical people. learn each name, ask about them. how you holding up? busy out there.

I mean, Christ, they're saving my life!

but also...I want to be someone someone would go the extra mile for. not just because I want to be a good guy either...I am going to need those miles, I think.

when I got into IR, and on wall oxygen at last, the nurse was from Louisiana and very pretty in a very French way. I said to her, well I had some trouble with oxygen out there. she said, I heard. I said, that guy is pretty much that guy all day every day, isn't he. she said he sure is. I said it can't be easy.

the nurse who did the procedure was not up to snuff on the new computer system...asked the intake questions, didn't save the answers. the nurse who prepped me asked again and did. it was a good team.

that kind of procedure involves a numbing shot or three... Snickers bars which make regular shots seem like Milk Duds chocolate...and some sensations like nothing you've ever had. not awful...not long... no sedation or anaesthesia necessary...just something you want eight secnds after to say, I didn't like that.

but it was done. in at 9, out at 3. and I'm more me than I was, for being more only me and not augmented.

took a killer nap when I got home. thought about working...had a visitor coming at 7...but Body Knows Best. took the second Dilaudid at 3pm after the procedure.

Dr. Gore had said that Dilaudid, orally, is considered for every 4 to 8 hours. if I ever wanted to, I could back down from four times a day to three. it wasn't really time crucial.

she also was the first person I've heard say that Dilaudid doesn't really do much for anti-inflammatory...that it's strictly a pain thing.

in the pattern of the day, she talked about what it would be like in future to come off of it.

point of this self indulgent writing is...by 9pm last night...I wasn't feeling great. it had been a day, I was still tired, and I had decided that taking the last Dilaudid, at 9pm six hours after the previous, would leave a long space before next morning's 8am; if I wanted to get on the new 11pm schedule, this would be the time to do it. so I waited. with the information that...I was not feeling the well being I was used to.

now...it could well be that a seven day chemo thing could still be felt several days later. need to stay open to that.

but at 10:30, when I broke down and went for the dose...I kind of immediately felt the world shift back toward its regular axis.

ok...even more TMI alert!!!

one of the battles team Bennett fights here at 708 is a fiendish and quite uncomfortable butt rash. man! so twice a day, lisa mans up and uses a three coat system on it...then I lay for half an hour with it exposed and drying. often I sleep. I did last night, rolled over at 11:30pm and went to bed. woke up at 4.

so...better.

took an internet break, lay back down...but drifted through strange troubling dreams and trying to get to sleep for a long time. long time. finally here now...but...feeling kind of the normal of the last weeks.

Scott, what causes the sleepy eyes during the day? what caused the not quite feeling right last night? is fewer drugs always going to be the answer, until I am free of drugs enough to try another study? should I really let myself focus away from the time that is being bought for me now, cherishing it but maintaining no denial that these days will end and I'll be right back where I was, ready to knock on the Big Door?

and...what about AudioQuest? how can I get what I need while I feel good and while the guy there is in such a generous place about it?

I'll keep an eye on the Dilaudid...mild mood enhancer? pain deterrent, but easier breathing drug as well? and for lingering chemo effects...the half life doesn't just drop precipitously, I'm thinking. the cycle is monthly, so there won't be any more for another two weeks plus. I asked about radiation again, and she's going to ask about that.

Dr. Gore, that is. I gave her Stewart's CD, which she had me sign, somewhat bashfully...and some homemade no sugar peach pie for her lunch dessert. lisa would never have done it...it was a fine vintage Monday, and a little broken up. me-- I say, gimme. I wished her well on her supercharged but at least a little more rested way, feeling blessed again to be under her care.

today, I hope, will be a more normal feeling, more normally scheduled day.

perhaps in it, I will consider how Rocky and Bulllwinkle caused the 60's.