two topics, and two half topics:

1. napnea

2. da studio es da bomb!!

taking the second first...I guess the real point of the studio stuff is that I am feeling well enough and strong enough to set it up (sometimes with help), and able to work in it and run it.

weak. on oxygen. still no bargain.

but able to fill in some holes, get some folks what they want.

that is such a dream for me. another Walk in Heaven. yesterday with Don and Mary...until something turns out not to have worked...I was able to fix a couple of things up to give them some options, and put my tracks for them on a hard drive for Jim's studio.

not like climbing a fourteener, I daresay. but a dream for me.

the day before with Lost Alamos was pretty full on. I want to put at least guide vocals on their material, so that even if someone else records the parts for real later, they'll know how the parts were meant to work. plus, there's one song that is finished except for vocals...if we can get those done, my beautiful and expert friend James Tuttle has agreed to mix it, and it could be available for download on the Lost Alamos site...also available as some tangible return on the project I was hired to produce almost three years ago, which became the project of producing us, the band, instead.

I've been saying that what I trade, through these medical days, is one kind of I-don't-know for another. when I went into the hospital, I didn't know. I just didn't. now...I don't know. I just don't.

but I'll take this I-don't-know over that one, all day every day.

I haven't, the Reader may expect, been singing.

if I didn't sing for that many weeks when I was healthy...it took awhile to get my voice to do anything. anything.

putting down guide vocals...my voice started to smooth out a little. it may smooth out more as I reach, if I can continue to.

but the air stuff...I don't know. I just don't. take the oxygen out, do a couple of takes, put it back in. use the studio to the fullest to piece parts.

I joke that I have four O2 tanks in my living room to get more air into my recordings.

but...I sang on the new mic.

I say it's da bomb!

Mary Huckins, bless every cute and talented hair on her head, took pictures of it.

and when I was doing the guide vocals, I tried to get them so that if at some point it became more valuable to have actual Scott vocals on the project than actual good vocals, there would be no oxygen noise, etc. to keep that from happening.

we'll all find out together, shan't we, what is down that road, and how long it winds.

I've held a guitar.

times when I had not played for weeks, even before all of this, it was always a looooong way back.

but outside maybe of general strength issues, it's not like there's a direct major physical impediment stopping me from practicing guitar, maybe kind of getting it back a little.

I'm not promising anyone that I will never play again.

I promise that I'll find the good three notes, and play them first, if I do start to play again.

I realize that, maybe especially for the now ironically named Unassisted Living (Ken Morris, Peggy Dennis, me), that my vocal parts are even more necessary to having a band presentation than any and all instrumental tracks I might have done.

guys, I don't know.

but I'll find out on a great mic.

***********************insert tertiary topic here...the BNB

yes. I have had over a week, maybe two without a Big New Problem. (for a bit, they seemed to be coming two a day)

but today is a day of a BNB

Big New Blessing.

non-medical variety.

and I'm always non-specific about unfathomably wonderful gifts...how big, who gave them...it tends to be embarrassing to folks.

but the efforts in concert of a number of angel people have enabled me to end up with a cable for my studio (and every other music I ever play) that mere mortals could never ever aspire to having. I'm telling you. no one alive would not experience sticker shock at it, and no one alive would believe how generous people , including one I haven't even met, were to make it happen.

Dear Supportive, Enabling Reader, I feel I should tell you those things as well, so as to make the things that inspire me and make me smile do the same for you.

better sound.

may my days here allow for time time time to enjoy it. every pull to not only life but what I make of my life counts towards inspiration and wellness. towards healing and being careful, but not playing small; looking to the future seems like the genius response to what I am going through.

this will help me listen towards the future.

and

maybe

it will allow me to keep 78% of the studio permanently set up in the living room. so each track is easier to approach. without asking folks to change cables and lug stuff.

******end of topic #2 1/2

the joke is, ok, number one, we need to get organized, and B.,

napnea.

that's what my sleep has become. I'll sleep for an hour and a half, be awake 45 minutes, sleep for an hour and a half. if I do it four times a night, I consider I have had a night's sleep.

but it ain't what I want.

maybe I need to look at the naprosyn I'm taking. I don't want naps...I want giant droughts of healing, in sleep. if I am on dilaudid, a morphine, then why is Morpheus no more accommodating?

today's BND...Big New Drug...may solve that.

started the etopaside today.

that's the famous "palliative chemo" drug Dr. Gore prescribed. I've held off taking it, though I've had it since Friday...I wanted a few more days of feeling my best, while company and sessions were coming through.

............see if you can see this coming...I don't know how it will affect me.

so I have nothing scheduled for awhile, for the greatest response- ability.

but, guys...it's a move. on the chessboard. maybe not the chessboard of beating the cancer. but the chessboard of more days like today.

something that could help.

and if it induces a little fatigue...makes me sleep though the night...I could be ready for that.

last 50% topic...

Longsuffering Longterm blog Readers...have you ever seen me use an emoticon?

I'm guessing not.

and it goes with this idea I have about masculinity, which as anyone who knows me knows is really the most important quality I try to cultivate:

I am not cute.

I used to read the Man from U.N.C.L.E books. only to fill the time between when the show was actually airing. I remember the villain of one was named "Tixe Ylno", because his name spelled Exit Only for the western world.

this guy wrote this book in a bar someplace.

anyway, a foxy female spy said to Illya Kuryakin, "say, you're cute!"

he replied, "Madam, I am not cute. A batch of mongrel puppies is cute."

I thought it was a good distinction.

so, leave the emoticons to the mavens of cuteness in this world, say I. but I did kind of decide to strike back when I received some sideways (literally) email from a very cute source, and did this:

l l l l l l l l ( l l l l l l l .................I said, ATTENTION, soldier!

maybe a couple more:

}{ (United Artists, like on the Hard Day's Night album cover!!)

as the British loan officer said, #4# >*

(pound for pound, this is greater than I'm asked to risk)

Scott

p. s. United Network Command for Law and Enforcement. I knew someday, lives would depend on my knowing that answer. like "Klaatu barada nicto" which is what you say in The Day the Earth Stood Still if you need to stop the robot from destroying the earth. thought it might come in handy.

now...without Googling....Mr. Waverly and his boys fought the world conquest dreams of THRUSH.

anyone know what that stood for? I'll write the answer in a subsequent entry if there is popular demand...ok, any demand whatsoever.

palliative chemo.

that's what the genius of Dr. Gore's mind labelled it on her sheet of new medical recommendations.

I think going in to see her was the good idea from my not quite as genius side of the brain trust. compared to the last time I saw her, I'm a different guy.

the whole time I was in hospice, I never made it into the bathroom. now I'm wobbly, but moving from room to room, even putting up and tearing down equipment.

every day still seems better, stronger.

Dr. Gore was very clear. we are not going to cure this thing, she said.

she said, though, to my continued request for a C-T scan and or chest x-rays to determine if the pericardial fluid was returning, if the tumor was shrinking, she said she could tell by seeing me what my story is even better than she could on those scans. I don't believe she knows if my big lung tumor has shrunk, is shrinking...she knows I have not shown any signs of afib for like 5 days now. pulse rate in 70's, and in rhythm.

I went with her. it's obvious I'm doing better.

so I phrased the question, how much healthier do I need to be before we would reach for things to attract even more health...at the risk of something actually curative happening?

she said, the thing about a Phase 1 study drug that would make it...I don't like to say, impossible, she said, but very very very hard...is that they insist you not be on any medications before you enroll. the trouble with the heart would be particularly vexing, in that they don't know what effect a new medication has on a healthy person's heart. they want to make sure the drug is the sole cause of any effect.

heart...and difficulty breathing, the amount of oxygen I'm on.

I can't imagine doing a study and not having the latticework of drugs that has obviously helped me.

so...no Gleevec like study drug for me right now.

but no time like the present, she said, for some low impact, oral, stabilization/ management oriented chemo.

palliative chemo, she called it.

because she is going to see if it can fly under the radar. if I can take the oral chemo and still not bring the division of hospice versus hospital, comfort versus curative, down full force on me.

goals for this new drug, etoposide, would be stunning, stabilizing, even possibly shrinking the cancer. but mostly buying some more time.

I'll pay. buy me some time.

she said, very small side effects compared to anything I've had.

fatigue, nausea, vomiting.

vomiting...haven't had that yet....

she said if she were a gambling woman...which, she said, she is not...she would bet that I would not have any side effects at all.

so we have the drug. I still think I'll start it on Monday rather than tomorrow. Dr. Gore will be gone all next week...resting, I think...she looked so tired today. she would see me the week after...but not, she said, till I have taken a full seven days worth. no point even checking in til then.

I'll spare you the list of other smaller decisions we came to.

except for her saying...I'm a pediatrician. I know butt rash.

she has tricks for it, from caring for kids...

backing off to half a dose of decadron for the afternoon one. less munchies...less speed writing rapping...less awake at night. not easy to cut way back at once...but I like this idea.

fading now...sleep, there is no other lover, I swear I wish to be true, so you can heal me as no one else can.

but...final note...

I asked pointedly if I had heard her say that, if present measures have good outcomes, if I continue getting stronger...that at some point, it would not be impossible to consider a study.

she said she can see these steps towards my comfort and strength possibly leading to the day I could do a study. wouldn't rule it out out of hand.

palliative chemo.

good night, Gentle Reader.

here's what I always meant by "a walk through Heaven"

in my little stitched together firmament, where I don't believe we hold onto our lives for ever but life holds us forever, I have nevertheless had this image from a vaguely New Testament origin.

it's been resonant enough that whether it ever literally happens or not is almost secondary for me.

in this visualization, I am walking through Heaven, with company from my life. I am me, my memory and consciousness continuing,

but not me, in that I've now seen the answers from the back of the book...remember in grade school texts, like math texts, how they would often print the answers to all of the exercises in the back of the book, secure in the knowledge that any student who didn't already understand the process wouldn't be able to make hide nor hair of the answers either?...

so I am walking through Heaven, but not at that point hashing out these answers, secure that even what I do not understand is understood in this realm. no longer taken by anger, suffering.

yeah, what a relief for you and me both.

I take the first walk with my mother, who also is in Heaven...I'm not in this visualization sure who wouldn't get to be there, whose afterlife this would not be...and she is equally free of her anger and suffering. equally more her "real" self, by which I mean, without the agenda that made our lives both miserable when I was a child.

and we are laughing.

I'll come back to that.

also in my firmament quilt is a piece that does too much for me to want to let go of - that , as star children, who we are sent down to to be our parents is based on their need, the world's need at the moment, our ability to withstand the waves of hurt and dark that it will be our lifelong assignment to try to damp down,

those things, and choice...that we volunteer for our parents, that we have something to say about where we go.

so a departing star baby might say, in the way that there is communication there, don't send someone more precious to that man and that woman...that angel boy could never make it. it's a tricky, hard assignment - let me try to be the one to do it.

ok, might come the dispatch, but it isn't going to be easy.

my mother and I are laughing on our debriefing walk.

"man, was I sure right when I picked you! what a mess!"

"ok, ok, but I had my own assignment, and that had been no picnic, either. I mean...I was clueless..."

"well, Mom, we both were clueless."

"but you, you didn't make a damn (sic) thing easier, Scott. here I was, just starting to get around the corner trying to commit to stuffing my angel voice where I'd never hear it and living to express anger...then here's this little ball of will, everywhere, yelling out everything that showed me every day how impossible that choice was going to be!"

laughter

"want me to say I'm sorry, Ma?"

"no, no, it's why you were there...I just...if I'd known..."

"you knew"

"yeah, just...well...wasn't that a time?"

"quite a time, quite a place, quite an assignment. I took on about as much water as I was able to bail for most of it."

"yes, and I didn't notice your choices for light and for anger springing all the way back once I was watching you from up here!"

laughter

"in that world, we're always looking for some scapegoat to blame our choice for either life of anger on...someone or something about life that made us close down, go away..."

"Scott, I wasn't the reason for your angry choices any more than you were mine, no matter how many times we tried to say we were."

"I know I tamped down some small bit of wave from the Depression and the World Wars, but I was an angry guy...not clued in by any means, but..."

"but you did what you were meant to do when we had you...to do one person's share towards light and growth, to go beyond us. I was always so proud of you up here, even when you were still trying to figure things out."

"and Mom, as determined as you were not to show me sometimes, I never lost sight of your halo, of this you. decades later, I would find some capacity for beauty, some taste for the light of that world, and realize that it had its origins in what I had seen in you."

"well, couldn't we have completed our assignments without being quite so hard on each other???"

laughter

"nah."

a series of walks through Heaven, with my father, my sister, maybe others I was touched by in my time in the material world, now fast becoming, in Heaven, totally immaterial.

I go through this long exegesis because, 1. I can. pixels are cheap., 2. if not here, where?, but

because this last week has been a series of walks through Heaven for me.

even though I am still an angry, willful cuss somewhere between curmudgeon, cantankerous, and contrarian, holding doors closed for decades just because that is what I do, I have felt more ready in my present context to give my arms a rest and look at where things are today.

I pretend otherwise, but it's probably the forced perspective of the guy considering Transition.

this has been the most social two weeks on my life. it continues.

you guys know, I would be doing gigs, sessions, meet and interact with people on that basis. push the button for me today, and I'd go right back to it.

I haven't chosen to "visit " much. schmuck.

I'm choosing it now.

ok, dammit, I'll name names.

it was a walk through Heaven yesterday and today with Dave Bell, my archetypal friend from high school, in some ways my last (til modern times) male friend.

it's lightening the relationship to call it a Bromance. we were close. to say we had stuff that got in the way sometimes between us is also to just say...we were close.

in the brother - Lennon/ McCartney - kind of usual relationship way, we started out by marvelling at our common interests...reflective thought, playing guitar, listening to music, maybe a healthy side order of living in the late 60's and whatever that next decade was.

at some point, the appetite for self definition starts to ask for distinctions within the partnership. I 'm still becoming shocked at realizing how competitive I could feel with David...who sees himself full of "can'ts" but in my eyes had a lot going for him in the world I would never have...

over time, Dave found the love of his life (I didn't), took on "the beast" and became a lawyer, had kids, and and became much more involved in philosophy and religion than I knew I would ever. in my own standing in my way way, I kind of took on the music and more music aspect of life. kept reaching for better sound, more playing music and the kinds of skills it got me to develop.

we didn't stay in touch so much after awhile, and I don't know that either of us went on to new frontiers of male friendship, either. we had the warm feeling of having had something, the ache of missing it.

I felt a beautiful generous Dave who flew right here to see me this week. not above reminiscing, not held back about sharing his present stuff with me. fun, and a walk in Heaven for me. I felt there was much left undone, unsaid when it was over.

but I had I had a strong sense of ok, back then was then, and the 80's was then, and three years ago was then, and this isn't.

I think if I Miracle Cured...I'd want to have some times with this guy.

a walk through Heaven.

I should sleep. but he wasn't the only one. I've heard people say to me in the past two weeks, oh, yeah, I'm over all that old shit you and I went through now. it's an amazing thing to hear. and can I face straight up in the mirror that I've been more ready to be over that old shit now too?

I'd better.

I have been for a few years now threatened by new male friendships. as in, Scott, let this in or just give up.

if occasionally challenged, still I don't give up. atrial retentive little Scott boy. you can't control which way you're heading always, but you can always control which way you're facing.

I'm going to try to speak with Dr. Gore by phone tomorrow. it's time to find out some stuff.

excerpts from a letter to Dr. Gore

God's own morning light, reaching through little pockets of night holding court in my room

soon to be the shadows in the day that give it shape.

I apologize for the length of this in advance...I will try to be concise and relevant. but you have asked me, I think, to ask you not only the questions one asks one's Doctor in charge, but maybe also some wider ones when I have them

I am breathing comfortably. I am increasing my sphere of activity. using the walker to get around the house, when the natural supports aren't even better. the microphone trial last night was unbelievable great...going to try to use it again today. eating great, oxygen on 13 liters, considering since I'm almost always 95-96 on my O2 reader seeing what a little less would be like. wanted to get through last night with no Dilaudid bolus, just the basal rate (very low, .15 I'm thinking?)...maybe I wasn't asleep as long at a stretch, but never uncomfortable breathing...

so...last night...maybe a little more of my coming in and out of sleep was just excitement.

I am just starting to understand the necessity of the difference between Palliative care, and what would be the term, actions with healing and curing at the center. I guess what nobody wants is a patient who isn't clear which to receive...who was focused on the Transition to death while the medical team is focused on the curative measures, however limited.

it comes up for me, now. when I couldn't catch a breath, I didn't know how much harder I wanted things to get, and didn't know they could be much easier.

now they are much much easier. I don't feel like I am maintaining thanks to ever increasing drug uses. but there is, short of the everyday miracle, not much thought about cure...

I was expressing to Nancy Meyer, who is a white tornado and the perfect addition to the present team, my curiosity about the fluid in the pericardium, how quickly it may or may not be returning (feels fine), and what an x-ray or scan might reveal about the amount the tumor is pressing, whether radiation got us any shrinkage, what if so...any eye to more radiation? other treatments...?

what would you do with that information, she asked? and I didn't understand the question, so I said, well, try to get better and stay feeling better.

she then explained to me that I would have to sign off all Palliative care to have such tests done. I could always return to Palliative, but it would be a huge sea change if I got an x ray.

that kind of gobsmacked me.

Dr. Gore, I like these days. a lot. if they end today, they've still been sudden life overtime. I want to have no illusions, positive or negative. and...you may have guessed about me, you may even feel some resonance yourself...I've always been a clarity junkie. what is at the crux, at the fulcrum point? I don't own a pair of sunglasses...I need to see, even if I squint. and clear sound...it's been a primary engine in my life.

my central question for you is... do I really need to upset the care cart to find out where we are, how we're doing?

I mean...I'm comfortable. so we know how I'm doing. but...

I'm telling my prayeramedics that it's time to expand the focus of the prayers past a peaceful Transition, to perhaps the impossible miracle that you've seen hundreds of times in your practice, perhaps some impossible chance at healing.

I think it's the realm of prayer.

not yet of my considering as possibility.

how much better should I be feeling before I ask why, and how it can Transition back instead of away?

I had some jokes about this writing...I'll send them separately if you like...I've taken enough of your time. when I am not in touch every day, when we are not in touch every day, I still feel that I am under your care every day, that the benefits I am feeling were painted by you, every stroke, and signed at the bottom. I have so much support here, plenty of help and people to talk to...I try to contact you as genuinely needed, letting you keep up with the Rockies without me as I'm doing other great stuff.

but I never feel you turn away from me and my needs. a singular praise for a healer, from a grateful patient.

Scott

more the blog osphere

than the blog o' fears today.

I have had something like six days of relief and comfort.

yowsuh.

a few days ago, the idea began to circulate about whether I might be able to maintain this level of comfort at home.

it blindsided me, and then everyone else in turn. can we really let in the possibility of increased living, be flexible enough to gear up for the good?

I, and then everyone, was not sure.

but little by little, it has become the plan of choice. the balance of medications current is close enough to helping everything be comfortable that I don't think, today, any major tweaking still needs to be done. and I sure trust the home support system to get me meds on time more than anyone here...four or five staff, one patient at 708.

I'm scheduled to go home by ambulance at 1pm today.

I've always, when I've heard ambulances scream by, thought "ambivalence"...a screaming ambivalence pulsing down the street. "I don't know! I don't know! I can't say!"

more so now after two (non-siren) rides in them.

it was like when I'd take a bus from Golden all the way up Colfax, stopping at every stop, transferring at Broadway to get to Cinderella City and Gordon Close's Melody Music. the only place in town with mona-steel 20 gauge G strings, which alone enabled my double string bends on acoustic guitar. three, four hour undertaking, stultifying.

when ambulances transport patients on a non-emergency basis, they go all the way down the longest avenue, stopping at every light. I'm ambivalent. sigh.

be home at 2. home care people visit and set stuff up, 2:30.

so I have to say again...it's a big change. certain to take something out of me.

don't come unannounced. I love you. please. I'm not looking to fill boring useless hours. sleep does that just fine. I don't want to say no, and I love company. a little at a time. please make arrangements...I know you know with what love I ask this. "even me?" please don't. I am glad for a little time now, and want it to be as good as long as it can be.

comfort

I take maybe ten pills in the morning

they should be kind of doing something...

I'm on 15 liters of o2. should help.

I'm on a basal rate (tiny) of steady morphine. in addition, I can add a bollus of morphine once every fifteen minutes...which I've been doing some in the day, and more to help sleep at night.

my guess is...most if not all of the relief I'm finding is from those.

it's not impooooooooooooooossible (as Tom Jones might sing) that I am getting some relief from the radiation, which over weeks, could be looked to to actually shrink the lung tumor that is pressing on the heart that is causing the afibrillation which is...sometimes I think Rube Goldberg actually invented the human body...or the guys that invented the Ideal game, "Mousetrap".

http://en.wikipedia.org/wiki/Mouse_Trap_(board_game)

so...it's pooooooooos'ble (thinking Gomer Pyle now) that there could be some actual relief from the radiation. but too little chance to make smart money betting on.

mostly, I think, these are good days on the high wires I'm balancing on.

breathing, kind of normalish. pain, remarkably low as always. standing weaker every day...so I mustn't be confused with feeling more like I can stand.

I saw the new mic.

I was so clear about this being Transition time, forgetting all of the temptations of clinging to the life I made, and clinging to my living with an eye to moving on.

now I've been comfortable enough, had some company...thinking...a couple more days like this, maybe not so bad...really never go home again? really never hear the new mic?

goal #1...oddly and obviously as it sounds...is for me to comfortable just being still, just resting.

yes, I have the Chris Daniels like mania to get back the old. but our cases are different. just take it easy, Dash...make sure you hold on to the comfort you have, don't risk it by trying too much too soon, or anything ever...

Tony, Don, and Mary came by yesterday. they reminded me of when, putting together the Lon Hannah album release show at Scott O'Malley's place in Colorado Springs, Mary, Amy Nugent, and Beth Leachman were the Lonnettes. I'm going to be hard to impress if I hear actual angels sing later.

I was talking with Lost Alamos, Brian and Vicki, about the classic cute sheen of the second Dixie Cups album, "Ridin' High"...yes, the "Chapel of Love" girls, but this time recording in their native New Orleans. great studio sound...and all the way cute but completely charming songs!! things Ry Cooder would have put on any LP.

I have long had a dream of three females singing those songs...I supposed I'd play. no one has flipped for these songs like I have...but once through the harmony stacks, I projected they would fall under their sway.

last nigh, my dream was The Lonnettes.

but me in bed with a Papoose, Vickie Bynum, and kathy and lisa ("The Pop Tarts")...arranging the vocals...

like the dog with a bone in its mouth, staring at the dog with the bone in its mouth in the reflected water....dropping my comfort to have the arrangement dream, losing all in hopes of both...

I decided, since I don't want funeral service, grave site, headstone, inscription, that I would tell everyone what I envisioned in my heart as a summing up for my life. it's one of Tom Verlaine's

hyper-poetic lines:

"Dream Dreams the Dreamer"

my dream of music (and my life) has dreamed and will dream me all of my life.

more later, I believe

Scott

(p.s. I also decided on a benediction, something from me to my cohearts, something deeper and less general that it may come out sounding.

but my heart says,

love to all

Scott)

the way Dr. Weyant explained it to me

was that there were more factors than risk involved

he said the surgery would be very risky. but also, that the chances for benefits seem little to none.

he said they leave most of the tumor in...and even if they take the really bad part out that is compromising the heart, it tends to grow back way fast, as if to say no therapy could help in the brief interim.

he said he is not afraid of the operation. he's been in exactly this situation before, and done this operation in this situation.

but has never seen a positive outcome.

so I had to go along that the operation, the last move on our side of the checkerboard, was inadvisable.

all of my cohearts, all of my prayeramedics, all of my Gentle Warrior readers, lay down your arms. the battle is over now. we bid high and brave with the universe, voicing our bid that now is not the time for my life to be over.

the universe said, we know more than you do about this, and this is indeed the time.

I sit now with a button on my right, that I will push after I am done writing.

Dr. Gore and Ashley Portismount, a Palliative care doctor (last name a silly approximation), came in a couple of hours later to see us. later joined by Dr. Leong.

she/ they had not spoken to Dr. Weyant. we filled them in on what he had said. I think they were not surprised, but Dr. Leong specifically didn't give up easy.

in the end, though, Pappy Yokum had spoken.

so now what?

palliative care.

doing whatever possible to help me feel comfortable in what I think are the few days remaining.

she said that can be done at home, or in the hospital...but the best place set up for it is a Hospice in Lakewood.

I didn't know what could be done there that isn't being done and couldn't be done.

the answer seems to be morphine. this drug will ease coughing, and lessen the feeling of having trouble breathing. at the doses we're currently talking, shouldn't lower the blood pressure. also washes your shorts.

it's like ibuprofen. why is it such a panacea? but ibuprofen sure is.

morphine.

some other time I'll open the association bag and say all that brings up for me.

meanwhile, relief sounds good.

the button beside me is the self guided patient morphine doser. every ten minutes I can push the button.

going to finish this first. worried that if I pushed the button now, I'd start talking like Kim Fowley. (see:"The Trip") or Slim Gailliard, mellowest cat to ever jive a thirties audience (see: the 50's version of "How High the Moon". prepare to LMAOROTF)

the question is always, how long a life is enough? was mine enough?

the answer is always yes. and it's always no. we want more. always.

Dr. Gore and Ashley heard me again speak of my preference of death, rather than hanging on til some fatal painful trauma, being just being put to sleep and not waking up.

is that not being a good soldier? while there's life, there's hope?

honestly, if days got worse from here, I really wanted to know if they had any option that looked like the going to sleep one.

it was the only question I had asked her before that I feel like I had gotten a vague positive response to from Dr. Gore.

but today I had to repeat my idea three times before they stopped re-explaining theirs.

no, medicine doesn't work like that. there is no possibility that looks like my idea.

the Hospice model is that you are kept comfortable, slowing and slowing down, until your heart at last stops.

hey, hey, my my, it's better to burn out than it is to rust.

but if they can give me that...I'm willing to give it a try. just don't know how ready for the world I'm going to get to be.

hope no one takes that that I've been a hypocrite with all I've said about loving life.

there's a terrible movie, Taps, which features a beloved academy teacher, a loyal student body, and the closing of his facility which is breaking his heart. he tells them, go on, take the world, never give up...as long as you fight, you cannot fail.

the student body gets its rifles the day before school closes and takes over the administration building.

and the beloved instructor has to go in and say, no, no, no, this isn't what I meant at all!

but, you said...

yes, yes, I know I said. never give up. never stop. but this is hopeless and ridiculous!

the best spin I can put on today's Hospice news (St. John's in Lakewood, already variously reported as the best), is that I am not going to die in Aurora.

it may be tuesday I transfer there.

I'm sorry I don't have better news. I'll need all of you more than ever. and I'll be honored, today and everyday, by all who respond to my story by living more fully, instead of choosing smaller and smaller lives.

thanks

closing window

Dr. Weyant will see me tomorrow morning. he gets back from vacation tonight. he is the head surgeon, who must decide if I would be a good candidate for the last chance surgery.

we saw the third guy on the Thoracic team last night.he was here for quite awhile, but added little insight.

I met Dr. Marshall last night, the second person up on the chain. she got all the information, and said she would be talking to the main guy, Dr. Weyent.

Dr. Marshall came back this morning. she said Dr. Weyent had seen the scans remotely, and...I don't know if it's her opinion or his...but she said the operation was not advised. too hard to get through. she said it wouldn't do what we needed it to, and I would probably never leave the hospital if it happened.

crushing. and soon slightly mitigated.

Dr. Leong...a friend of Dr.Gore and on duty here somehow...came in for a second and looked startled when I suggested a decision had been made...he said Dr. Gore and he would have to weigh in before a decision is made.

window cracks back open.

we emailed Dr. Gore to update her and got a response within fifteen minutes...who is this woman???...saying that conversations are continuing, and tomorrow we will have a plan.

she always says the most positive thing that can be said, without any fabrication. just the best spin. she's Derek Taylor.

the second meeting with Dr. Leong let a little more light through the cracked window.

he had dinner with Dr. Gore last night, and is going to the game with her tonight (hmmmm.) and he says she says the opera ain't over until Dr. Weyent sings tomorrow morning

that's where things will stand for the rest of today.

they decided to wait a couple of days before draining the pericardial fluid around my heart. fine with me. that doc...an elderly, well respected cardiologist, said that if a window had to be placed to drain the pericardial fluid, he would prefer Dr. Weyent do it to him doing it.

Weyent comes with God's driver's license, with his name on it. but here is more light from Dr. Leong.

I started to tell him about my preference in dying, as I said to Dr. Gore yesterday. he said, I already know what you're going to say

I hadn't thought of saying, stop me if you've heard this one before.

but he said, tell Dr. Weyant that.

he said, you can look at scans all day long. but if you come in, and the patient is way out of it, or 93 years old and frail, or seemingly doing ok and lucid and has some personal preferences and convictions...that can all influence any decision.

so the die is not yet cast, and the cast has not yet died.

and, oh, yes

there was an outcry! an outrage! a deluge!

so here's the joke, as I remember it from Stewart:

a surgeon, an MD, and an ED doc go hunting.

the surgeon goes first. hears the rustle in the bushes, sees the bird fly up. "that is a grey-tufted grouse" he says, takes aim and brings it down.

the MD is next. hears the rustle in the bushes, says, "maybe a quail, maybe a partridge, maybe just a pigeon." takes aim, and brings the bird down.

finally, the ED doc hears the rustle in the bushes, sees the bird go up. he takes aim, brings the bird down, and says, "what the hell was that?"

not the day of no hope.

for an hour, I thought it was.

I began agitating at 11am today to see if the hospital could drain any of the loculated pockets of pleural effusion. many calls, many amazing results...Dr. Gore answered an email in ten minutes.

what is she made of??

got us entry not to ER, but straight to IR, interventional radiology, where the draining could happen. we sped in.

they said, we couldn't possibly do this without a C-T scan. it was made to happen...better than our original day of tuesday.

the doc who was to perform the operation was great.

she took us back to a room we didn't have access to, to look at the scan.

it wasn't fluid we had seen on the x rays. it was tumor. really taking my right lung out of the picture.

I thought...well, that's it.

Dr. Gore, who was working from a different hospital today, said she would meet us at the cancer center when we got there. unbelievable.

she said we may still have a move left.

she had mentioned before a risky operation, with few guarantees, to go into the lungs and remove whatever amount of the tumor seemed prudent, starting with what was pressing into my heart. I had assumed there was no way I was strong enough for that.

but she said today, though I feel weak, I have good vitals, and a strong constitution.

she checked me into the hospital, and talked to the two leading Thoracic surgeons. one of them will come by tomorrow morning, have some ideas and ask some questions. also the anaesthesiologist, maybe some other folks.

if they decide I am strong enough, I'll go for the operation, as soon as they'll have me.

I told Dr.Gore, I want to say something inappropriate here.

I don't think often about how I'd prefer to die.

but preferable to me to long severe pain spells, struggling every day until some huge trauma ends my life,

it would be ok to be put to sleep for an operation from which I would just never wake up.

preferable still to go to sleep for an operation which would hopefully ease every secondary problem massively, recover, and see what I could muster to fight a cancer of much diminished size.

but I thought the Brave Reader deserved to know that about me.

every day...big day. tomorrow...big day.

gentlemen, welcome to Thoracic Park.

narrowing spotlight

today's visit with Dr. Gore was not all bad news.

she said that it seemed the largest lung tumor, the one pressing on my heart, had not grown at all since the radiation. stabilization is a primary goal in such cases. she recommended adding a mild oral old style chemo to the prescriptions, to kind of get to it from two angles; the possibility of the tumor shrinking, from either or both, would be watched for in the next four to six weeks.

the shoulder tumor has neither shrunk nor grown, but has dried up considerably.

she cut the dose of metoprolol to half...hoping to raise blood pressure a bit and prevent some of the dizziness I've been having. she prescribed a prescription strength nsaid, a stronger sort of aleve, to replace the ibuprofen I have been taking.

not a BNP (Big New Problem) but a NP is that the pleural effusion seems to have "loculated", meaning that there are some sizable pockets of fluid in the area between my lungs and my chest that are separated, and will not respond to the catheter that was put in. we're going to try to get a C-T scan Tuesday, which will give a more sophisticated picture of what is where, and then see Dr. Gore on Thursday to discuss what measures to take...separate draining, or some type of connecting tube...

but my not getting much drainage, and not getting much relief breathing, makes some sense now.

it is amazing to me that Dr.Gore can be so caring, and yet talk about possible medical outcomes none of us want to have happen so directly. I admire it.

she said it is too soon to tell if I will get stronger, strong enough to go through a new study, or not.

she said if I don't, then it's time to start talking hospice.

she said in addition, there is an ongoing danger that, with my pulse rate as high as it is and the pressure on my heart, that one of my coughing fits might be too much to recover from, and cause a fatal heart attack.

more and more guys are being wiped out on my dodge ball team, and more and more balls are being aimed right at me. I have some twisting and turning to do to avoid them all.

but yesterday was my worst day. most discomfort, least me-ness; I was thinking if today were like this, I'd check into the hospital again because this just ain't cutting it.

slept deep last night, though, and long for me. (after having an episode where I may have passed out sitting up in bed)

this morning, felt like getting up.

was at the hospital today from 11 to 5. everything was hard. but I did it. up writing now, and I don't feel too bad.

if I can engineer some more comfort out of the next few days...I'll be a happy guy. and it might even point to recovery.

I hope I can emulate Dr. Gore, and bring you my medical tale, best and worst case, directly and honestly. for tonight, I figure I'll write about Sondheim, Spiderman, and The Jaynetts another time.

(ever since Mark Bleisener pulled out The Jaynetts' album, Sally Go Round The Roses, at a music swapping session, I've been frankly jealous. I broke down and bought a copy from ebay, got it yesterday, listened to it last night. not even my stereo could remove the sonic mysteries from the World's Worst Recorded LP. it's less Vaseline on the lens than a jar of Vaseline. but the sonic spackle of "Sally Go Round The Roses" is the least of its mystery. the feel, the words, everything about it is VooDoo. they were from New Orleans (youngest, 17 years old), but they seemed to have seen things and to have secrets no one on the mainland could ever know. it remains a source of fascination to me)