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  • 7thson
    replied
    Hope everything works out for u,moose.Stay strong

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  • Guest's Avatar
    Guest replied
    Got a call back from the scheduler. The Doc's schedule is open earlier than had been thought, being able to get in as early as March 2, and there being openings but for one week, out into early April, which is the date I'm considering (Fly down April 4, pre-op consult on April 5, surgery April 6, released to my hotel room on April 7 or 8, assuming there's no glaring complications, catheter removed and follow-up visit on April 13 or 14 (or there-about), then, if all's well, return home April 16.

    Flights are notably cheap for that time period, whether cash or air miles; way less than the last planned and failed trip.

    This is where it gets real; butterflies are swooping around in the belly, thoughts come at a more rapid rate, and the looming shadows of everything unknown in outcomes, or even current status, look darker and more ominous.

    I hate this shit. But it's got to be done. The surgeon's words echoing what I know; "There's no free lunch in this." Though it's a fact that the hospital serves up a steady supply of sugar-free Jello, if desired.

    -------------------------------------------

    Joe Cocker, Live

    'High Time We Went'

    https://www.youtube.com/watch?v=9RsoGDSvfZE

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  • Guest's Avatar
    Guest replied
    Tried to contact the scheduler for surgery for the Doc I met with yesterday, to get some prospective dates to plug into the calendar and airline dates, as well, and was told by the primary schedulers for the hospital/clinic in reference that the folks in his Dept like to do their own scheduling, but she sent a message to the urology dept. scheduler for me, yesterday mid-day, telling me I ought to hear back from them yesterday or this morning. It's now noon in Seattle, and I haven't heard back.

    During the initial call to the main scheduler for the greater facility, she sort of hummed and hawed after opening up my chart, then there had been a delay putting me on hold, and I inquired ta that point if there was something referenced indicating a hold on scheduling or other issue, and she said "no". Which was when I inquired re. notes in the chart.

    So, once again, it seems to be a 'hurry up and wait' moment, with an air of something afoot that is still a mystery to me. . And it -is- possible that my previous mtgs. with other clinics had detrimental (or other) connotations; my mind and body have been in a LOT of different places since the diagnoses, and several of those places were not stable, solid, desirable, or normal operating places for me..

    I can see where the 'moving target' nature of this disease, and its varying/variable effects on all of a person's being, can get missed by Docs, who are sometimes all about the mechanics of the surgery, and sometimes miss that the adjustment to stress (and there have been many stressors here, beyond the cancer) creates, or can create, a different take and expression of being on any given day of the week.

    I guess we'll see. But it is truly a reminder that we, the needy, in these situations, often take what comes our way, and like with the cancer itself, much of what takes place is out of our hands.

    I'm a slow learner where some things are concerned; often having to run a new concept or phenomenon through my mind a number of times before I am comfortable with what ever revelation, new technique, of bit of knowledge. Sometimes this can be frustrating for the other persons involved in my learning or adjusting. Sometimes there's unplanned social or other costs for this.

    I'm hoping that's not the case in this moment, but it seems as though something is 'up.' Just not sure what yet.

    'Hurry up and Wait'

    ---------------------------------------------

    Jerry Garcia Band

    Covering Bruce Cockburn's 'Waiting for a Miracle'

    https://www.youtube.com/watch?v=FFeAD_OzNWI

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  • Guest's Avatar
    Guest replied
    Conversation with the Doc lasted about 50 minutes. My tendency to provide LOTS of detail was cutting into our time, however.

    Highlights include that 1:200 patients experience bleeding during procedure that requires a transfusion; blood would be vetted for disease through standard protocols, but if needed, would not be my own.

    My ventral hernia poses increased risk of stress to the muscles in the abdomen during the surgery, as 6 holes are made near the navel, during the surgery, and the abdomen is inflated to the extent that (as the Doc put it) the patient is about the equivalent of "6 months pregnant."

    While the plant-based diet is likely helpful, controlling diabetes and weight probably have a far greater effect on outcomes and recovery than the plant-based diet. Insulin resistance may help the cancer to grow, and so having those numbers and related health indicators closer to right, matters a fair amount.

    The sulforaphane (broccoli sprouts) and ^ lycopene intake (Mediterranean diet) have better/more research behind them for proven efficacy than the Turkey Tail mushrooms.

    Outcomes, as written numerous times, are often at least as much about the frequency of the procedure being performed by a given clinic or Doc, and their skill-set, as much or more, as other variables.

    That said, this Doc is involved with a well-established facility that has done/does LOTS of research over time.

    ~1% of his patients have an additional surgical procedure done, 1-2 years out, to correct any continued enuresis or urinary incontinence, which is most often dribbling', whether post urination, or otherwise.

    With Rx meds used low-dose, and possibly the pumps, post op, both being used specifically to ^ blood flow to the penis for rehabilitation and maintenance of veins, arteries, muscle tissue, nerves, etc., sparing ONE hydraulic nerve on the left side, but taking out the right side hydraulic nerve, I would have a 20-30% chance of having a spontaneous erection and sexual activity.

    With the use of Rx medications for -during- sexual activity, that gets boosted to ~65% chance of effective sexual expression, though many are aware that use of such drugs specifically -for- the moment of sexual activity, robs much of the spontaneous aspects of sexual activity.

    Adult pads or diapers would be worn for 2-6 mos. post-op, for most patients, with about 4% continuing to wear pads after 1 year, but most of those cases still involve 'dribbling' as opposed to 'opened flood gates.'

    Use of the pumps in rehab also aids in maintaining length of the penis, more than length being negatively affected by the splicing of the urethra, which, as Weez pointed out, is an inherent part of the procedure; severing and then reconnecting the urethra.

    The Doc echoed my sentiments; "there's no free lunch" in this. There's a likelihood of -some- loss of aspects of life as I've known it.

    Post-op, in the event of the return of cancer of this type, options would be radiation or hormone therapies. Sometimes both.

    The earlier numbers of this cancer having a 3% chance of killing me in 15 years, if left untreated, were viewed as 'overly optimistic.' (Again, bearing in mind, this Doc and his facility are steeped in their own in-depth research. Solid sources and solid place. I didn't feel like I was being 'blue-skied' or sold a used car. I felt like the information being offered was well-based and top notch.

    Then there was the standard post-op info re. risk of blood clots cutting loose, and recommended walking once every hour or so, post-op, including on the plane home, 9 days after surgery or so, to avoid such additional problems.

    So at this point, I have the option of 2 of the surgeons I've met with to date, with today's being likely my 1st choice, and 1 radiation oncologist, whose proposed tx regimen I 'felt' somewhat more comfortable with, if only due to a shorter duration of hormone suppression tx and better stated outcomes. The 1 surgeon could likely work on me in a bit over 2-3 months. Today's surgeon could work on me in about a month or so, and the hormone suppression, in the event of radiation, could begin soon, locally, with the first injection, then later on, a flight to Seattle to do a scan to 'custom-build' the radiated seeds.

    I don't like the thought of radiation and related surrounding damaged tissue, as well as the risk my ventral hernia poses re. surgery using air that expands the abdomen and separates tissue in that general area.

    Short of that, today's Doc stated what I already know; I have lots of information now, not all, but lots, and what remains is to make a decision.

    So... Decision time. Not immediately, but soon. And I hate this part. Gathering information is safe and involved no commitment. Deciding which path to take in tx. is the actual rolling of the proverbial dice that goes beyond the information-gathering phase, and involves crossed fingers, and hope. Hope is something that sometimes pans out, and sometimes doesn't. And there's no true 'turning back' from these procedures.

    Sometime very soon, I will close my eyes, pick up the phone, and take the risk. Again, soon, but not this minute. There'll be some meditation happening soon, and a softly spoken decisions voiced after that.

    ------------------------------------------

    Dire Straits

    'Walk of Life'

    https://www.youtube.com/watch?v=Sys9LCUo-AU
    Last edited by moose eater; 02-19-2021, 04:14. Reason: Transfusion #s of "1:2000" should have read "1:200"

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  • Guest's Avatar
    Guest replied
    Originally posted by buzzmobile View Post
    Let me know when the highs start getting around 75F. I think I'd enjoy my sitting around your camp-fire pit in the backyard and passing some hash around too.

    View Image



    One minute 20 seconds
    We still occasionally get up into the +90 range in the summer, buzz, and later summer is fine time for halibut fishing out in the Gulf of Alaska. Mid-July, is our time for lake trout fishing, over in the Yukon Territory, Canada.

    By moose season we're sometimes getting chilly again, but still having highs in the +50s to +60s most years, as opposed to significantly chillier moose hunting years ago.

    On-line in minutes to speak with (what/we hope is) the final Doc's mtg., before making tx. decisions.

    -------------------------------------

    John Lennon

    'Nobody Told Me'

    https://www.youtube.com/watch?v=cuuhsqA95iA

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  • buzzmobile
    replied
    Originally posted by moose eater View Post
    If you were a logistically closer neighbor, I think I'd enjoy your sitting around our camp-fire pit in the back yard, and passing some hash around. (COVID-safe visiting protocol these days, buzz; separate pipes).
    Let me know when the highs start getting around 75F. I think I'd enjoy my sitting around your camp-fire pit in the backyard and passing some hash around too.



    Can someone tell me how long this roller coaster ride lasts?
    One minute 20 seconds
    Attached Files

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  • Guest's Avatar
    Guest replied
    Thanks everyone. That was very nice.

    Well...

    I didn't like roller coasters or ferris wheels as a kid; the inertia and heights brought fear. No delight in uncertainty and fear of some sorts in my world.

    And though I had already returned to a sleep schedule more in synch with most of my life; broken sleep or 'dyssomnia' (not withstanding the several months recently, post-diagnosis, during which I slept 12-16 hours on average each day), the fact is that for MANY years, the night before a trip, I don't sleep much at all... certainly not well, if I -am- able to sleep.

    And so it was this morning, I was up packing until after 4:00 A.M., then at 4:30 AM, got back out of bed, eventually laying on the couch at about 5:30 AM, and drifting off to sleep.

    At 8:30 AM the scheduler from the Doc's office I'm to see tomorrow, called the house, and she said the Doc had looked at the memo I'd sent, and said it was good, that "He's heard nothing of ending of Alaska's emergency COVID provisions, and that If it was going to end, (he'd) have been one of the first to hear it."

    I thought for a moment about when the last time was that a Doc's ego had worked in my favor? Never before? Who knows? This was a new phenomenon for me, but with some risks involved... for both of us.

    I tried to tell her that everything I've found from the State, says that the emergency provisions are, for now, toast, and Telehealth in general, in Alaska, let alone across state lines, is once again, for now, taboo.

    (Mind you, we have villages enforcing their own travel restrictions in remote places, and Telehealth was a saving grace for their medically fragile folks and elders, but that's another issue.. sort of).

    She insisted the provisions in Alaska are up and running. I know better. They are not. But I'm just a patient who lives here, and has been trying to wrestle this particular alligator.

    She ended up stating, "Well, if you want to fly down to see us, you can do that, or we can keep the Telehealth appt."

    On the bright side, cancelling the flight, and going back to the Telehealth appt., got my wife's 65,000 air miles returned to her acct. And I'll be here for a fuel oil run, though temps are now reported to be much colder this coming week than originally forecast, down to -35 f on several nights, and -10 to -20 f. for highs on some days.

    I phoned my town car service dude, & let him know plans had changed.. again, as well as cancelling my lodging, etc.

    But if Telehealth in Alaska is now taboo (and it is), then the Doc's billing is apt to be rejected by my insurance company, AND, if someone wanted to screw with his professional licensing, for going across state lines with a Telehealth appt to a state where he's not licensed, they could probably cause him some degree of grief. Title protection a 'la Alaska's medical lobby.. as expressed though past legislation.

    Worst case for me is that insurance rejects the billing, I get a bill for the full fare, likely to be around $500, -or-, the Doc (and he seems like a pretty decent and honest fellow overall) can say to their accountants, "No, this was my fault; he tried to tell us this was not applicable any longer, so spare him the cost of this consultation, and make it 'on the house'."

    He MIGHT be able to do that, but in today's modern Rockefeller Medicine, the clinics and hospitals tend to keep providers away from billing people, so as not to sully their perception or sense of their jobs, and the reality of expense of medical care in the US... (Obscene, by most standards). So the likelihood of them writing it off is questionable.

    Either way, my wife has her 65,000 air miles back (to be better used on future medical flights, when seats cost fewer miles), I got to sleep most of the day (though now I have a lot of gear to unpack), I can meet with this Doc tomorrow morning, in the comfort of sweat pants, t-shirt & a bath robe, in my own house, and I'm now spared, for the time being, having to sit in a flying tuna can, with a quantifiable % of C-19 positive persons on-board.

    Can someone tell me how long this roller coaster ride lasts?

    -----------------------------------------

    John Lennon

    'Watching the Wheels Go 'Round'

    https://www.youtube.com/watch?v=uVXR2LYeFBI

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  • trichrider
    replied
    Treacherous tide left me here
    A beach was yesterday in this place
    Rising water deceiving memories
    Like laughter in my face.

    Cold wind rode high the crests
    Broken mast dipping in the drink
    Was this afternoon a pleasant breeze
    Would I just one more drink.

    To brave the cold wet depths of despair
    Surrender lifes warm breaths beauty
    Choking down that one last swallow
    Denying not death it’s duty.

    The deep beckoning impatiently
    Last sip the salty wine
    You should have stayed at home
    Saved us both the brine.


    ..........
    [youtubeif]icZ3xXYl7bw[/youtubeif]


    stay frosty

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  • sdd420
    replied
    Originally posted by moose eater View Post
    sdd420.

    From 'The Last Waltz', a who's who of musical talent; The Band, Bob Dylan, Ronnie woods, Joni Mitchell, Neil Young, Van Morrison, and too many amazingly talented persons to properly list.

    'I Shall be Released'

    https://www.youtube.com/watch?v=oBACxgvrCGo

    And the very nice waltz from.. The Last Waltz;

    https://www.youtube.com/watch?v=pi-SnEiRs-A
    Definitely one of my favorites. I have always especially liked the Van Morrison set (caravan)

    Leave a comment:


  • Guest's Avatar
    Guest replied
    sdd420.

    From 'The Last Waltz', a who's who of musical talent; The Band, Bob Dylan, Ronnie woods, Joni Mitchell, Neil Young, Van Morrison, and too many amazingly talented persons to properly list.

    'I Shall be Released'

    https://www.youtube.com/watch?v=oBACxgvrCGo

    And the very nice waltz from.. The Last Waltz;

    https://www.youtube.com/watch?v=pi-SnEiRs-A

    Leave a comment:


  • Guest's Avatar
    Guest replied
    trich.

    Instrumental of 1 of my favorite instruments; SW North American, Central American, or South American pan flute.

    Beautiful stuff.

    https://www.youtube.com/watch?v=LsE7sfh28u0
    Last edited by moose eater; 02-17-2021, 12:36.

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  • Guest's Avatar
    Guest replied
    If you were a logistically closer neighbor, I think I'd enjoy your sitting around our camp-fire pit in the back yard, and passing some hash around. (COVID-safe visiting protocol these days, buzz; separate pipes). You have an incredible sense of humor and mental imagery going for you.

    I have no idea where Russ ended up, nor his friend Ian. 2 good guys, whom we ate dinner on Russ' bus with a few times, along with his Gordon Setter, Gordon.

    One of mine, written on several hits of acid, in a public park (Palmer Park) near Wyoming/Byron Center Michigan in about 1975, sitting around a camp fire in the woods, where we would trek into after the park gates had been locked, have our fire, and sing, play guitar, drink a bit of beer, smoke a lot of weed/hash, and sometimes do hallucinogens.:

    Mother Earth, Mother Earth

    How old are you today?

    Man has walked and ruined here

    And you are old and gray

    Steel into your bright green,

    and muddy murky water

    Man has come, man has come

    And you've begun to falter

    He tore and wounded all that's yours

    and left you here to ponder

    Man has come, yes man has come

    And you've begun to wonder.

    -------------------------------------------

    There's boxes of writing, some better and some worse, written on everything from napkins to scraps of cardboard to coffee filters, laying around here in boxes in closets, from decades ago.

    Not one of my better works, and likely linkable to me, but that night, with 3 or 4 tabs in me, we found a 'Y' segment of a hardwood tree stump, and I got help carrying it out of the woods to my 1967 Oldsmobile 98, Luxury Sedan. We were healthy & strong, and that bugger still weighed bunch.

    I took it home, continued eating LSD, locked myself in my bedroom, and got out my carving tools and wood burning set, and modified the stump piece into a sort of large sculpture, with a wooden image of a book from the craft store mounted to one leg of the 'Y' at the top, into which I burned that poem (irony??), among other things, and then cleared a square area of bark, wood-burned a morning glory vine and full moon behind the vine, into the face of it, and painted parts of that image, then mounted the base of it to a slightly larger diameter disc of birch, 2" or so thick, with the bark still on the remainder of the stump, and added 3 legs of birch branches to it so it could stand like a chair or table.

    My mother thought it odd that I was sequestered in my room for several days, coming out at night to find some sort of food, and then going back in.

    By day 3 she would occasionally stand at the top of the stairs, and call my name, asking if I was OK. "I'm fine mom.." grinning ear to ear with pupils like flying saucers, and going to town on that stump. 'Lost in Space.'
    Last edited by moose eater; 02-17-2021, 12:36.

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  • buzzmobile
    replied
    Those were simple times, few attachments, few obligations, and a lot of life ahead. They were good times.
    I had a Civil War fort that used to be my home hunkered hard against the sea. Nor'easters whipping in from the Atlantic required shouting from the ramparts. I hurt my neck trying to see where the words in the wind went. Russ waved them across the Pacific. Western repeater.

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  • Guest's Avatar
    Guest replied
    Originally posted by Cuddles View Post
    hope your trip is successful and have a safe flight, mate. good luck!
    Thank you.

    I have less congestion and pulse rate issues/stress/palpitations than before the last trip down, so I'm hoping that stays static.

    So far, it seems OK. All I need to do is keep my space from others, and focus on my mission. Taking along a limited supply of Ativan in case I start to get panicked, but I haven't had a need to ingest such things in weeks now. Maybe a month, even.

    Thanks for the kindness.

    --------------------------------------

    IZ

    'Somewhere Over the Rainbow'

    https://www.youtube.com/watch?v=V1bFr2SWP1I

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  • Guest's Avatar
    Guest replied
    Originally posted by buzzmobile View Post
    Safe travels, moose eater.

    I kept my watch cap and pea coat after discharge. Somewhere at some time we separated. I miss them both.

    If you should find yourself by the sea in Seattle feel free to shout into the wind:
    Thanks, buzz. Again.

    There was a fellow in Homer, Alaska in the later 1970s. His name was Russ (honestly), and he lived in a (converted) bus. Russ of Russ' bus fame. He had a Gordon Setter.. named.. Gordon (true as true can be).

    One day I was driving down the Homer Spit, well before they built all the funky/ugly little tourist cabins for tourist businesses out there, back when the 'Spit rats' (cannery workers who would build tremendous, elaborate 'visqueen palaces' out of drift wood and poly sheeting; some of them simply amazing), were still permitted to camp for free out there...

    On that day, as I was passing the base of the Spit, where it joins the mainland, there was Russ, facing Kachemak Bay, both arms raised straight up, but for a slight angle out to either side, his bandana on his head, wearing his Kedds sneakers he customarily wore, and it looked as though he was hollering at the Ocean that day.

    He was a sizable man, long red hair and beard, and looked like a lumberjack-meets-hippie affair, with a strange twist of kids' tennis shoes and a bandana attached.

    But I maintained that image of Russ, standing there, hollering at the Ocean, right up to this day.

    That came back again, brightly, with your poem. Thanks.

    Those were simple times, few attachments, few obligations, and a lot of life ahead. They were good times.

    Thanks.

    If you haven't seen it yet, check out 'The Last Full Measure'. Saw it on Hulu. Rattled some dust in my mental archives.

    -------------------------------------------

    The Everly Bros.

    'Dream, Dream, Dream'

    https://www.youtube.com/watch?v=tbU3zdAgiX8
    Last edited by moose eater; 02-17-2021, 11:36.

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