Wednesday, November 8, 2017

Home! For Now

Unbelievable.  In a whirlwind of little events, I was discharged today until all is set for final stem cell transplant.  That is what they call it now.  Same thing as bone marrow transplant.

But it is all done through blood, not digging inside bones.  The stem cells get introduced into blood stream and find their way into the bone marrow where they set up shop.  We then hope all is copacetic in the 'hood and no conflict occurs.

I have as good a match as one can have for a donor so that should help.  No idea who or where.  Later I may find out.  They have their ways.

There is the necessity to go back in every few days for maintenance of the mainline port still in my chest, blood tests, etc.  Even though to me it is as if none of this is real, they are serious about various precautions I must take.   I cannot afford even a hint of cold or flu or that could screw everything.  Blood levels are improving enough to at least clot blood if needed and soon even fight infection.  Even so, all precautions are heavy duty until the whole thing is finished.

I hope it can be arranged in two weeks.  It may take a little longer.  The fact that they are skipping the interim chemo round known as "consolidation" and going straight to transplant is very fortunate.  It has to do with the lack of cancer and the state of my system.  Had my bone marrow become active sooner I would have gone the usual route.  It just timed right to avoid it.  Hard to fathom but that is life.  What a stroke of real fortune.

So here we are.
In my new room.  Nice and easy on weak fingers.  Maybe I'll learn a chord or two.
Still No harmonicas until this whole process is done.  I can live with that.
Literally, more or less.

.


Tuesday, November 7, 2017

Still Not Sick

Things may progress more rapidly than anticipated.  Such a weird process.  It may end up that we go more directly into the transplant procedure.  No idea really why the alternative to this is the standard way.  Much of it I just don't quite get.

What I do get is that in biology so many factors come into play that it is hard to put everything in the same box.  Some people respond one way, some another to the same stimulus.

The good news is that the preliminary bone marrow report shows me to be leukemia free and shows signs of trying to produce more and give some higher levels of white cell related things, which is what we want.

WE'll know more about everything tomorrow.   Today was all good news.  They have apparently found my clone.   Reportedly, somewhere in the world they have a willing 10 out of 10 match.  Not sure what the 10s are but the picture is easy to grasp.   Often people have to work with less than that.  This increases my odds for success.

I know this is all horribly self centered.  Hospital stays can do that.  There are some other patients that have had success with various things since I have been here.  I have had brief interaction with them.  It is cool to see them make it through.   Some are more cranky and spend their time in bed with TV.  Some are just not in good enough condition to do much.

The main enemy is the refusal to do the things to prevent respiratory issues like pneumonia.  They need to get out of bed, walk, breathe, use this little breath thing.  The inspirometer.  You inhale lightly to keep the left ball in the range that says best and see how high you can get the disc on the right to go.  Maybe it is marked in milliliters.   It goes up to 5000.

At first I thought 3500 was pretty good, but I have since hit 5000.  Only a couple of times.   But I don't cheat, I keep the left hand part solidly in the "best" range.   You have to inhale lightly in a controlled fashion to keep it there.  No question harmonica playing has helped.   So has not smoking for the last four years.    Lucky.   It is a tricky device.  Brute force won't help.

People often end up back here or have trouble here because of not doing what is needed to help stave off respiratory issues.  You are vulnerable in any case, but odds can be tilted in your favor by doing the right things.  I try.  Stay here long enough and anything can happen.   So I am extra vigilant.

May not be here long before hiatus at home.  May be shorter time than thought between now and endgame, which is transplant and that process.

Monday, November 6, 2017

More Than That

It is a scary thing in most ways to have to enter a hospital for extended stay with only hours notice.  No time to even go out to your hermit cottage on the mountain, with that wonderful view, and wildlife.

Then after 3 weeks on the inside experiencing things that are for other people, like chemo, hair loss and generally serious talk about your condition, you find out the place on the mountain is basically history to you.  The incredibly kind landlords are putting their place on the market, and that includes the cottage.  Due to typical laws of housing and such they cannot sell the cottage and its property separately.  I was trying to buy it that way from the start.

So, I will probably pay Nov. rent on 15th and give notice that I'll be cleared out by Dec 15th.  The two angels who took it upon themselves to get my stuff out and the place cleaned, while laughing at me and enjoying the whole thing, assure me it will be done by then.  They already have done most of the hard stuff.

I'm glad I cleared out the shed some months ago and set up storage in Alpine.  I arranged another unit downstairs to make their efforts easier.  And to give them fresh space.  The other unit is slightly smaller and upstairs.  Last time I put something in there, not a heavy item, I was winded just half way up the easy flight of stairs.  That was the blood situation heading south into leukemia land.  Who knew?  Not me, though I suspected something was awry.

So soon I am technically homeless but for the kindness and insistence of friends.  It is a fortunate thing.  I have noticed that some people find it both puzzling and annoying that I have such good fortune.  I am not sure I understand that thinking or care to.


For the first time In many years I am happy, and I intend to remain that way.  There is so much to be done if I can get to the other side and thrive enough to do it.  I expect to.   Too much has been too good to forget and let this view of life fade into what it was.   

There have been a few hiccups in the process but overall it is going well.  They finally did another biopsy today.  We hope it too comes out clear of leukemia cells.  Very good chance it will be clear.  Then to see why the slow recovery and slacker output of various types of blood cells.  They may do some things to stimulate it and they may be able to go quicker into the transplant phase.

Got to do that with my situation  Just do.   A number of fortuitous and, one might say, coincidental events had to occur in order for all the good stuff to come together at this time.  That does not escape me  I don't play God's spokesman by claiming a particular reason or crediting a particular deity.  There are people who will fight you over your reluctance to accept their view of life and existence and God or not.  Seems an odd approach.  Any excuse to get angry, I guess.

This is about my 14th second chance in life.  That is when I successfully get a rebuilt and rebooted immune system and blood factory.

What matters does have to do with people and somehow bring a little joy their way.  Still, that does not mean you accept the unacceptable in your attempt to love everyone.  Enabling or arguing with alcoholics can be fruitless and not something that brings joy to anyone.  Those who find it hard not to be jealous or almost bitter over your good fortune are not likely good choices for a future life filled with love.  Seems like an obvious thing but you'd be surprised how much I have indulged those who felt better raining on any parade I might enjoy than being happy for it.   People do get jealous over odd things.  I would never admit that in the past.  I should have.

My new litmus test is, would my brother endure or indulge this activity?  He has been very good at just shutting out those who'd sap his spirit and time.  It is real easy to know the answers.  And I am enjoying employing that private form of respect and love toward him.  He's had much to do with getting me through the darkest of times when I least expected it and most needed it.

I'm sure many people find such love and angels in their own lives and families.  I hope so.  It is a source of pride and gratitude and humility in a sense.  I can finally accept without guilt or shame.  The givers get satisfaction from seeing joy and gratitude.  They know they are altering your life and circumstances.

It has taken me a long time to accept the simplest of truths in life.  Several of them.  I do wish everyone had my good fortune.  Not my disease or mutations but the good stuff that this condition has allowed me to experience and know, not just see.






Thursday, November 2, 2017

Maybe Fate, Maybe Just How It Goes

Since Oct. 5th I've been in this resort, known as a hospital in La Jolla.   Days 1-7 included a 24/7 chemo drip, along with various drugs to counteract the chemo and keep me happy I guess.  Sleeping, walking, even in the shower, IV tubes were hooked to the deal they put in my chest for mainlining stuff.

Because of certain friends and family, that week can only be described as pure joy.  How that happened I cannot say.  The first day in, Sande the singer, came in with her guitar and we played in my room.  I think it was day 3 when Karen came in with Sande to add viola to the mix.  We played well and many in the ward peaked in, and talked about it for weeks.

The second time I tried to sterilize the harps with listerine--harmonicas for the uninitiated.  As the purpose of the chemo was to run my white cells and most else in the blood production world down to zero, I decided that I can't really sterilize them well enough.  Too easy a breeding ground for bacteria.
So, when I am out the other side I can play again.  I will still be really careful about keeping them as germ/bacteria free as I can.
Part of my view.  To the left a bit I see hang gliders and paragliders.  That is Torrey Pines golf course, under and beyond the trees. The Pacific beyond. Hard to get a good shot.

So, this process is lengthy.  I only half understood what was happening when I got here.  One thing is clear, had I just refused to check in I would have been dead in days.  Here I am.  So that's a rather nice state of affairs from that perspective.

Because I had a blood disease before this acute myeloid leukemia hit I am at high risk in many ways. One of which is that it is pretty sure the mutations and such I already have will cause things to go south again left to my own devices.  So, they planned from day one to eventually do a stem cell transplant.  The type that is accomplished by having a donor.  Siblings are often a great match.  But they prefer young people not someone my brother's age.  He was indignant, but they insisted.

So they search some kind of bank.  That has been in process.

Day 14 they performed a bone marrow biopsy which revealed I was leukemia free.  In remission.  Had I had only AML, that may have been the end of it, other than waiting for levels to come up and some after care.

As it is my levels are taking forever. Just enough red blood to avoid transfusion, not enough white cells to fight much of anything.  But that happens.  I hope the levels begin to rise so they don't have to do another biopsy to figure out what is going on.  Can't go home with these levels, yet.  So, here I am.
The good things are that things are stable and I have a room overlooking the bay to recover out of the hospital.  A friend I knew in high school and her husband insisted.

The story of friends and family who have gone to extraordinary lengths is just phenomenal.  They have ensured that people who could give me a cold or other illness don't come here.  It is not a circumstance in which many can visit.   It just is not safe.

They have helped do everything I cannot do, and was too frozen in depression to do previously.  My cabin and the landlord's house are up for sale, so that place will be history.  Good thing I secured storage in Alpine before this happened.   So many twists of fate have led to this place and to the great love of family and friends.  I won't connect all the dots. Either you believe me or not.

In the beginning I did not want to give details.  I was on stuff that amplified the positive and negative, and I could not afford the negative.  True friends got it.  Those who prefer to judge and decide they have a right to complain about how I state things or how cryptic I choose to be, those who use friendship as excuse to vent or control, did not enjoy the lack of info.  And I purposely kept them in the dark.  Caring without respect is bullshit.  It is not caring, but something else.

The old I love you, so now let me criticize and abuse. No more will I tolerate that in my life.

I never knew so much love in or around me existed.  It carried me.

So, I hope the levels come up enough to let me go home for awhile.  Thank God for medicare, and that I reached just old enough before this hit.  And for Lynn the broker who hooked me up with supplemental insurance.  I knew my previous MPN could go south so we figured it was worth hedging my bet.  That paid off.

Thank you America.  This has got to be costing money I never dreamed of ever making.

So, things are positive but require patience and maintenance of good spirits.  As soon as they said I could wear sweats and my own long sleeved T shirts, away with that damned gown.   I have a recliner chair in the room so, when breakfast comes at 7:30 I get out of bed and in the chair.  No breakfast in bed for me! No bed until bed time.  I seem to be one of only a few who don't hang in bed watching TV.  Maybe the only one currently.  I have yet to watch tv.

I have my computer and I text a lot with my brother.  He is one funny guy. Siblings can have an ability to make you laugh until you cry.   The woman who thinks I somehow saved her from doom in high school is here every day.  Between her and my brother, I get no breaks.  They make me laugh a lot.   Her husband is also right in on this.  It is something extraordinary.

I still get to discuss band issues with Sande, suggesting people to fill my space and such.  She got a very fluid, and skilled guitar player that I kind of pushed for.  I think he'll add in the long run.  I have yet to hear any audio of the gigs they've done so far.  When my friend Richard, the resonator player (dobro), sat in, the band donated all their tips and he donated his cut as well.  There was more than that they sent my way. I know that place and how much I generally took home.  This was almost three times that.  What a tear jerker of a gesture.

So.  That is the deal.  And I could very well get through this, and again be playing sometime.  It could take until summer. But that is how it works.

They have a nice Martin, classical, nylon strings, in the room where I'll be staying.  So that may be of interest.    When I get to be out of here.  The transplant deal means another month in.   We hope that can begin mid to late November, but this slow bone marrow activity may change that.
Nothing will ever be the same.  Some of that is good.  I cannot be what I was, and how I was.  It was a very unhealthy spiral.  This is all new.  I am highly dependent.  To resent it would be a slap in the face to those who have freely decided to catch me rather than let me fall.


I hope I always feel this love.  It is remarkable.  And remarkable how easy it is to enforce boundaries without much anger involved, if any.

Oh, this kind of chemo leaves you bald.  So much coming out I had it buzzed down to 1/8"  and still losing that.  It will grow back, doesn't give you mouth sores or make you sick. Hair is the most trivial of concerns.  Got great hats that feel really nice.
That is how it works.  It is going to be a long ride but so much good has come of it.  No matter what, I am better than I was.



Friday, October 13, 2017

So far we won Battle Ship

Next is Twister, the toughest part.   Someone changed the order.
Stay tuned to Life In the Chemo Resort, overlooking golf, ocean and hang gliders

Tuesday, October 3, 2017

Bill And Ted's Bogus Journey - Reaper Games

Playing Battleship With The Reaper

If you are familiar with the old Bill and Ted's adventure movies, you'll get that reference.   They escaped the Reaper by beating him in Battleship--a game, not tied to electronics of any kind.

So, I don't know where I stand.

I suspect when your blood production is so lame that you are rushed in for a transfusion, perhaps the status quo has changed.  While I was there they stuck something in my hip bone to get a sample of bone marrow to study.  A BMB, bone marrow biopsy.  Now we expect to know result tomorrow.

Never did I think I would have, need, or maybe even accept a blood transfusion.  Seemed like the right thing to do at the time.  My mother would have refused.  So would many religions.  It is probable that deadly results would have occurred by now.

I kept finding I was winded at the slightest activity, sometimes mild little adventures like walking to my car, ten feet outside my door.  Or walking across the room.   It had been going on awhile, but was rapidly getting worse, so I finally called the world of medicine.

I don't get these bureaucratic organizations.  I call, thinking I am getting the office of my primary care lady, whom I rarely see.  I explain the problem and say I want to see what she has to say.  Next thing I know they are making an appointment with a pulmonary specialists I have never seen.  I tell the girl I want the hematologist in this loop as it is likely the blood issue.  Right over her head.  She didn't consult the primary either.  Nuts.

I decide that approach is no good.  So, I go online to the Scripps patient interface and cancel the appointment.  I can't make appointments online but I can message these people.  So, I shoot one to the hematologist office explaining the symptoms, and since I know their psychology, I tell them I am stopping the chemo pill unless I hear otherwise, because I think maybe we are running deficiencies.

They immediately order a lab for me to do asap.  Then late that night I get a call at home urging me in immediately.  He seemed a bit miffed that I was even conscious.  I negotiate to come in the morning. Etc.

More tests and still hgb levels around 6 or 7.  Whites about double what's max good value, and reds about half what's bottom of envelope for OK.    Yikes, they say.  WTF, I say, except I really knew it was coming.  I knew for quite awhile.  Just did.  But beyond that I know nothing.  I have no clue where we go from here, if we even do.

We'll get results of the BMB then what that leaves in the realm of treatment options I do not know.  I am not sure I won't have some tough decisions.  If a person could come here and make my little 400 sf cabin perfect I would pay $2000 or $3000.  Then I'd have peace of mind.

I have taxes to do, but I can handle that once I find the W whatever forms.  I'm a little late on filing.  I still resent the fact that people have allowed themselves to be normalized into being subjects of the state.  It is wrong.  It is not the same thing as being a citizen and asset to the community.

It is what it is.  Now, I wonder if I will see the next birthday.  My number one goal is to get all in order, snatch whatever I have out of grimy government fingers, and not leave work for others.  Not much else I can ask at the moment.

There is a remote possibility this stuff can be sort of contained in ways to keep me going for a decade or more.  The cool part is that I still look healthy.  Better to look good than to be good.

I did three gigs in one weekend after the transfusion.  It was shocking how it feels to have energy.  I had forgotten--so many months trying to fake it when around people or playing music.  So, now I play because I can, and because it clears my mind.  I tell myself to play like there is no tomorrow.  Dark humor I suppose, but who knows?  It may be reality.

I hope I did more good than harm.  I know I have hurt people in long ago times, mostly out of complete ignorance and no grasp of the realities of life.  I cannot stand to see others in pain, and am horrified at the thought of me being the cause of any of it.  With luck I may find that I have done more good.

So, I think they should play this as someone tosses the ashes in the most suitable place--Gulf Stream, Rockies, off my nephew's Seattle boat?  I would go the traditional in a box route but that requires buying real estate and God only knows what fees and regulations come in to play. So forget it.


Monday, October 2, 2017

People Are Nuts. Why?

The half truths that assault us from everywhere, and the refusal to even accept truth if it ruins victim status, has just about pushed me over the edge.  It is unreal.\

You're a racist!!!
Why?
 Because you said you're not happy with Mexico dumping their shit in the ocean which is carried north to Imperial beach and beyond.
What, are you serious?   Or are you just unaware of the meaning of the words you use?
MISOGYNIST!!!
??????
So, why do you abuse women?
What?

And on and on and on.  That is not far off of the dialog I see these days.  The word, "misogynist" is as over used and misused as the word, "racist".  Good God, is it totally necessary to continually create victim classes in order to manipulate people and votes and broker power?  never mind.

The problem is that the word, "misandrist" doesn't roll off the tongue.  I don't think half the people that use it know what the word "misogynist" even means, but the hear and see it and it is usually blasted at Trump and anyone not obsessed with his demise.

The truth really is though, that public schools teach and function on the basis of dogmatic misandry, and they are proud of their efforts over the last forty years to ram this hateful doctrine down our throats.  Object and you are a MISOGYNIST, sexist, homophobe, racist, islamaphobe.  It is required to lump a bunch those together.  Shotgun fired BS passing as intelligent insight.

I admit to being a phobe.  I think groups like CAIR are dishonest, evil, and creepy.  I think their religion is creepy too.  It used to be my right to have dislikes likes, lusts, fears, and even, God forbid, CHOICE!  Most religions bother me.  A huge contingent of the religion of peace creeps me out, I confess.  I base it on personal interactions and conversations and stuff I see here and there on media and the net.  Could be all a trick.

I know of one or two members of the ultra tolerant happy go lucky islamic faith who are great people, honest, trustworthy, bright, and cool to be around.  They probably haven't seen the inside of a mosque in fifty years.

Mostly I don't care about them one way or another, just like every other group who voluntarily shuns others as unclean or whatever.  It is their insistence on special treatment and constant efforts to achieve victimhood and use that to force the rest of the population to their will in some way that makes me dislike them.

That covers many groups whose unifying characteristics have nothing to do with real principles or tolerance, but rather condition of birth, imagined sexual identifications etc.  Nothing to do with principles or how best to live in peace.

You cannot just mind your own business any more.  If you aren't hijacking the angst of who you see as downtrodden, even if you are in no way part of the group you choose to defend (unbidden) then you are part of the problem and it would be OK for you to get shot.  That is the convoluted thinking that prevails.

If you don't jump on a cause you think is BS, and in a manner you consider BS, then you are the whole list of awful things; racist misogynist sexist homophobe meanie to lbgtynqxxx community islamaphobe fascist nazi --all of it.  One big list which may morph into one single very long word.  And it will be what no one wants to get called, because that label puts a target on you. Fair game.  Open season.  Object?  Ha!  That's your privilege talking.  And you don't even have to be white.  Anyone who disagrees, who isn't white is a traitor to their race their people.  Inside they must be white, otherwise they'd be waving the victim banner and wanting to burn down the White House.

We have become a land of racist xenophobes whom have no appreciation of others, and who hate all but their own people--as defined by condition of birth, not character or beliefs.  Hypocrites.  It is as if each lying hateful panderer is trying to outdo the other in dreaming up insane victim scenarios and justifications for preventing any opposition whatsoever.

It is absolutely nuts.  To the point where even I have to call many of these mouthy fools and noisy groups out on their false representation of police, particularly in certain specific cases.  I say even I, because I have long thought most cops to be dimwitted sadistic bullies.  And I have had some unpleasant interchanges with them in years past.  Bullies harass people they can.  It is based on perceived power.  Not race.  Where race would come in is if they generalize thinking some ethnicity or race has no financial political power that can hurt them.  So, they may profile when picking victims.

Playing the indignant martyr in the setting of the NFL, which has mire than it's share of wife beaters, and violent criminals is laughable.  I don't care whether they kneel or all pull out guns and shoot themselves in protest.  They are pandering for peer approval and the media portrays them as people of character who care and feel more than we mortals.  They are dimwits being painted as men of insight and character.  Pretense.  Does anyone really, deep down, believe this nonsense?

No need to answer, the obviously do

Sunday, October 1, 2017

So, This is What it is Like To Have Energy

I guess this is how adding red cells when you aren't used to having any works.  At first I felt OK but not a giant difference.  By this morning I was feeling like a happy person with energy.  Our first gig was at noon, Nate's Garden Grill.  All their food is good, carnivore stuff or not.  It's a cool place with half the tables outside.   The kitchen is located on one side where indoors meets outdoors.  It works well.  Lots of families with babies.

I'm always surprised that people sit right there in front of us with their kids.  We are not loud, as musical groups go, but still I would not think they would feel good hanging right there with their babies.  It's weird playing to tables and people eating.  I often covet what I see on their plates as I musically babble through the harmonica.

It was so shocking to me today that I not only did not feel winded carrying an amplifier or walking to the car or any of that.  I had no idea that this would make such a difference in my playing.  Not stuff that involves much breath but finesse stuff and nuance.  Everything felt so easy and doable.  I am used to it actually hurting.

I know I will soon turn back into a pumpkin.  My preferred thought is to enjoy this while I can and throw my heart into the playing without being a lunatic or inappropriate, but when there is a cut loose number go out for all I am worth.

Now, I felt like I was really delivering quality backing and playing at Nate's.  I was loving it.  But on our second gig, this evening at Rebecca's, I gave our "John, cut loose!" number everything I could.  I have no idea what I did but people were reacting audibly at several points.  It's almost a polka beat, but not.  I forget what someone called it.  All B minor and only a couple of cords, but pure heaven for me.  Anyway, it's the kind of thing no one else is probably doing.

Maybe this was an important show for that group.  Another group played and then a guy did a short set, and then us.  I looked up and all the people usually doing other stuff while they listen were all watching us, and the baristas were leaning at the end of their counter listening.  It was like all other activity was suspended.

People were saying, "What are you guys doing here?".  I should tell you that the South Park area is rife with lunacy, so as great as those compliments might feel,  it is not something I'd take to the bank.

The whole thing with me was concern that I might be already back to the condition I was in that panicked my hematology guy into topping me off with some high test A negative.  A circumstance I never thought I would face.

I grew up under and around certain people who would have refused a blood transfusion.  I used to wonder if I would have qualms.  I guess not.  I knew the score, and my Dr., and there is no way he would order such a thing if it weren't imperative to the life of the patient to some degree.

I don't think I should continue discussing this now.  It could make me sad.  That is wrong.  Go be sad after you kick.   Despite what people make of it when they think it's all forever, life is a remarkable and beautiful state of affairs.

Probably there will be some difficult days ahead, but I have a shot at getting past it for some time.  Depends what we got going.  I probably already know, but I prefer to let that slide.  I need it all to turn around.  And it may.

In the mean time, I hope I still have energy tomorrow and that it does something good for a person to cross my path or hear us play.  If it does, then I'll probably be having a good time, and they'll throw money.  Right.

It will be outdoors, and should be a decent crowd.  I would have rather had a later time, but people will be out, just not as many as later.  We play at 12.  I hope we do as well as today.  We had some errors, but they really did not matter.  No clash or off key mistakes.  Sande never sings off key. I have never heard her hit an off pitch note.  Some people are not all that into it, but a ton more are.  Especially lately.  Something changed.

We got an encore after the cut loose number.  Never seen that in a coffee house.  They were friggin chanting.  So, Sande graciously agreed to do another "John cut loose" number.  I was kind of paranoid about turning back into a pumpkin.
'
I was sitting sideways in my car, door open, feet on the ground.  I stood up.  I am so much in the habit of that being a real effort that I groaned without thinking, but I was already up.  I just stood up like i used to do.  I guess I used to.  I honestly do not remember how differently I felt, but I know I did.  This is another ball game.  Priorities and outlook change a lot, but if you notice it, it is scary, so if I am you, the you just block out the things that bring uncertainty and fear.

Because all I really need is what I said before, the cabin to be put in spic and span spiffy primo condition, and to have some other things straightened out.  Then I can face whatever.

It looked like several people were taking video.  I wonder where they'll be.  I hope they youtube them.  What their titles would be, I am not sure.

I made a mistake of looking up treatment for what I thought maybe they'd diagnose when the results of the appropriate tests are back.  I'm doing no more of that.

Until awhile ago, I was really feeling upbeat.  I have to maintain that.  Whether it influences this condition or not, it is a lot more enjoyable being upbeat.  If time may be a little less abundant than I like, all the more reason.  Be upbeat while you can.

One thing for sure, I have not been imagining things.  Some people tend to need that sort of reassurance regarding their sanity.

Oh. This was about energy.  What a great feeling.  I was in one of those "I love everyone" modes.  Even the people I cussed at in traffic.  One of those, "He's as lazy as a dead skunk, bless his heart" sort of things.

I almost forgot.  Never mind.  Suffice to say this brief reprieve made possible by modern medicine has been, and is, I hope, a real treat.

Most of all I am missing denial about now.

Friday, September 29, 2017

What an Odd Day

Geez.  I never did get sleep last night.  Probably because phriend Pham indicated that if red blood was currency, I'd be near destitute.

Finally got there by 7 AM.  Traffic is not horrible, but still a slow down.  After having to set some arrogant doctor straight, I got them to speak to my team, as they should have done from the get go.  I will address some of this with Scripps admin.  If I have to deal with stupid medical outfits, they need to correct some of the glaring deficiencies.  Had I not held my ground, this dork would have been taking stool samples and doing other unpleasant and contextually inappropriate procedures.

He finally hid from me the rest of the day.  But his boss will get some fire when I return.

They did the bone marrow biopsy---talk about a pain in the butt.  It had its moments.  Those results come next week.  Looks like the game has changed but no use guessing specifics because I only know the general possibilities and they get treated differently from one another.

I had a friggin blood transfusion.  Takes three hours.  So, if I were strongly tied to certain religions, or if I were my late mother, I would have refused it and shortly run out of reds and platelets and been overrun with white cells.  I did not think the prognosis would be good even in the short run without the fill up.  "High test!", I said, "with Techron."   They complied.  Only the best for me. A negative.

The best thing is, people think I don't look sick or infirm.  Better to look good than to feel good.
It's possible this can be controlled with various high dollar substances like forms of interferon.

When I think how fortunate I am to have access to some top notch doctors and facilities (despite the previously mentioned shortfalls)  I am grateful.  Many people around the world would just have to die.   I'm also glad I made it a point to supplement my commie medicare (joking--but only partly), and I have supplement for prescriptions.  Some stuff is pricey.  So I did that right.

I am not as depressed as I was.  Maybe because I knew this was coming, and maybe because I temporarily have some juice in my veins.  Other than my traditional mix of ice water and lemon juice--no sweetener.

Doctors don't know what to make of me.  Especially me singing the praises of denial as a treatment strategy, and making the guy doing the bone marrow swear he is an artiste in this field.

So odd, it feels like this is all child's play and I am just going along with it.  But I do not feel like one of the afflicted.  More like a research project or something.  That disconnect is likely the denial part, but why get into it in a way that makes one feel bad?

I am still convinced this is going to turn around or work to my ultimate better good.  It will be OK.  Really.

Great gigs this weekend, Nate's Garden Grill---they love us, and are very kind and they have food I not only can eat, but I also like---not always the norm in vegetarian land.  Not like Pine House.  Wonderful place, but no good for my dietary habits.  The tomorrow night, Rebecca's coffee house.  Never know how that will work.  Nice enough place. Half the time I know 80% of the room, but sometimes interesting beings visit.

Then Sunday afternoon the Adam's Avenue Street fair.  Outdoor stage and who knows what kind of crowd, but plenty of people, whatever they be.  It's an artsy sort of place.  I think many crave our leader/singer, Sande, in a KD Lang sort of way, if you get that.  OK by me.  I like KD's version of Hallelua almost as well as a girl from Australia who used to communicate with me on garageBand.com.

OK.  So I whined about transfusions and hooplah, and who knows what.  I feel positive in an automatic way; not forced, thought out or contrived.  Just feel OK with everything.  But will be even more OK when we tackle this mess.  Not really that bad.  Just not to my liking or expectation of how one should keep the property of others, as in landlord's pad.

I can only hope that those who reject transfusions no matter what are wrong.  I don't know the alleged consequences, probably varies with individual holy persons and their particular dogma.  That is not to ridicule them.  I am for choice.  Maybe they are right---for them.  I feel protected by something unseen.  I just do.  And I really am.  But I do not know the ins and outs of all that.  I just feel like It will be alright, whatever It turns out to be.

My story is so full of prodigious little rescues and such.  If you were me or real close, you'd get it.   Like lucking into medical services from being fairly poor and totally uninsured four years ago.  And I have dealt with the real cream of the crop, or first stringers, at least.

I a beginning to believe there is something to the idea of having lessons to learn.  But that makes absolutely no sense to me.  Why and who?   Why lessons and who is headmaster, OR HEAD MISTRESS.   [I seriously hate the aggressive ignorance which leads us to reject the notion of universal pronouns because we are too mad at our lives to get it.]

Many think they know the answers but their explanations seem unlikely, wrong, or just wacko to me. That's OK.  I'll just settle for feeling at peace.   Or at least calmly accepting of reality.

Next week will be interesting. The biopsy conclusions.  I expect the verdict to be "Ice Water in Veins".

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Ballistic Mountain, CA, United States
Like spring on a summer's day

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