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.

1 comment:

  1. Thanks for the update. We think of you frequently and fondly and appreciate knowing a bit more than we did. fin & bac


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


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