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.

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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.

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.

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.