Cummer Museum

In downtown Jacksonville there is a small museum on the old Cummer estate.  It is a small museum, with a small formal garden out back.  The collection is largely the idiosyncratic  gathering of art and artifact of an old Southern aristocratic family.  However, they had a large room exhibiting the work of Eugene Savage.  This was a delightful discovery.

Savage painted the Seminole Indians living in the Florida wilderness in the 1930s, 1940s.  (Here is a brief summary of the history taken from Wikipedia.) The Seminoles were a collection of mostly Creek southern tribes that tried to avoid the encroachment of European colonization by retreating to the Florida wilderness.  After the Seminole War  ending in 1858 the majority were "relocated" along with other tribes to the reservations.

Savage painted the Seminoles to document their culture and to witness the destruction of that culture  by the encroachment of "civilization" and environmental exploitation.  His style was a beautiful, soft abstraction as opposed to realism.  I found that the removal of detail left me with a feeling of place-- the extreme quiet and warm soft air.  

A few examples.  You can view more at http://hamiltonauctiongalleries.com/Eugene-Savage.htm.

edema

My "dry weight" is about 150 lbs.   On Dec. 5  I am at about 168 pounds.  The fluid is all over but particularly in the abdomen and the feet.  

They dried me out some with some lasix.  Today, Dec. 9, my weight is down to about 158 pounds.  You can see I have scratch marks from the severe itching from the elevated alk-phos. 

Alkaline Phosphatase

The alk-phos is a liver enzyme measuring the health of bile ducts in the liver.  At the moment, mine is very high and that leads to intense skin itching.  It is "itching from the inside" which still makes me want to scratch.  So I am awake waiting for the itch pill Meg prescribed to kick in, and trying not to scratch my skin raw.

Jean-Paul Marat saw himself as a friend of the people, he was a doctor of medicine and a physicist, and above all he was editor of the news-sheet Ami du peuple. He suffered from a skin disease and had to perform his business for the revolution in a soothing bath.

Today we saw Dr. R. who discussed my elevated alk-phos.  He showed a graph of the level versus time. The level was sky high and rising rapidly the first day or so post transplant.  Since then it has been coming down slowly but steadily.  Dr. R. said that was good, because if it hadn't I "would have been toast".  He used those exact words, and they are words that are hard to forget.  Dr. R. is very quick and all business and does not hold back.  It was clear he was not worried at the moment, and Meg and I left the office calmly.  (Until it is normal and stays there a few weeks, this will still keep us on the edge of our seats.)

I remember the first full post op day in the ICU.  Meg looked at me with grave concern and said my numbers were still very high. I clarified-- "you don't want to know, high".  "Yes." She said the doctors thought that they would come down once the initial trauma to the graft was over.  I dozed and she sat by my bedside by the window.  She was back-lit by the window so I could not see her face.  She spent the day tapping into her cell phone.  What was going on in her mind?  I am sure that she was thinking about all the things she knew could go wrong, working through the specifics of my case, assessing the risks and trying to gauge the odds.  And I am sure she was praying in her head, although I don't know what that really means.  (I certainly would have been disturbed if she stood next to my bed davvening all day!)  She is cool and collected under this stress.  She has an excellent medical mind, one that impresses all the docs.  None of this I knew when I fell for her so many years ago.  I am so grateful to her for being their to watch over me,  watching me as my best medical advisor and as the girl I first fell in love with.

prednisone rage

I have been taking prednisone for acute gout attacks for many years now, and the family is well equated with the effects it has on my mood.  They will ask, "Dad are you on prednisone?".   "Yes, damnit but do what I am telling you to do!"  The story in our family that has reached the level of myth is a time some years ago heading to the LaGuardia airport and being stuck in a long toll line at the highway exit.  A driver of a luxury auto was engaged in the usual game of edging up and trying to jump the line.  I was not going to have it.  You know it is the prednisone working in your brain and you know you are behaving badly, but it is like watching a film of yourself-- there is absolutely no way you can control your emotions.  I yell through the window.  I shake my fist.  I keep inching forward, every inch matching his move until our cars fenders are almost touching.  No!  You are not getting in front of me!  I roll down the window, threaten the life of him and his family.  I reach way out and pound on his fender with my fist. He backs off.  I creep up.  He slides in behind me.  Slowly, my heart rate comes back to normal.  "Dad, are you on prednisone?"

So today I went out to the suburban Mall in Jacksonville to the Apple store for a replacement battery for my macbook pro.  To ensure I got the right battery and so I could recycle it, I brought the old battery.  The apple store was packed with holiday shoppers, all trying products under the careful supervision of the apple "technicians".  I walked up to an available employee, waving the battery and said I needed a replacement.  "What is that?" she asked blankly.  "A MacBook Pro 5 battery and I need a replacement." "Would you like to make an appointment with one of our technicians?" was the polite reply.  We used to call them clerks.  And you didn't used to need an appointment.  Like the janitor in the Tom Hanks move The Terminal, who whenever approached asked "Do you have an appointment?".  The blood surged, my heart started pounding.  "It's just a battery and I need a new one!"  Somehow, this time I managed to hold on.  I turned away to a different clerk.  I asked again.  He pulled the new battery off of the shelf behind him.

Exiting the store, I took deep breaths until I calmed down.  Of course, there was still the xmas music. Where is Bad Santa?

Methylprednisolone Visuals

It is good to know to expect psychotropic-like effects with a gram I.V. of Solu-Medrol (``vitamin P", as they called it back in the day in Pittsburgh).   They don't tell you this.  They sneak it into your IV while you are under in the OR and then when you get to the ICU they talk about some patients getting ICU psychosis.  Hey man, you mixed the kool-aid!   So this time I new what to look for.

I got alternating bright green and red fluorescent lettering on the white wall across from my bed in some strange alphabet that I could not read.   Mostly I got images of movement-- shifting sands or swirling worms or snakes.  I knew what I would find in the snakes, and sure enough the skulls were there underneath.  But it wasn't all scary stuff.  I fell asleep listening to Beethoven's ninth, and on the last vocal note in the fourth movement I awoke to a startling bright white field of vision that remained with or without my eyes closed.  Returning to the main theme of the 4th movement, I saw a crowd of people walking away from me.  (I confess this is probably a memory of the funeral scene of the movie Immortal Beloved, but this does not detract from the realism of the vision.)   Another pleasant moment was of being surrounded by women's breasts, sort of like a very crowded version of the cover of Electric Lady Land.   (One pair which were distinctly Meg.)  A clear sign something healthy was going on inside my new liver.

where's the beach?

I an still leaking from the incision and various holes.  Yesterday Meg and I went to target.  I got a cart and headed off for menswear.   Along the way I felt wet and reached under my shirt.  Several large bloody pads hit the ground and I started leaking in the asile.  I quickly scooped up the bloody pads, wiped the floor and tossed the pads into in a trash bin.  Then I headed briskly over to the pharmacy.  Grabbing a large box of sanitary napkins, I ripped it open and started opening up pads and shoving them under my shirt.  Got the leak under control and, placing the open box of sanitary napkins into my cart, I headed off to menswear looking for socks.

in the trash

path report from liver #3 came back.  a new 1 cm tumor was found, very close to the portal vein.  NO invasion into the vein.  So as far as these things go, this is a very good prognosis for the liver cancer.

the fuse was burning, and it was getting down to the very end.

Suxamethonium chloride

The last thing to do before going to the OR is to talk with the anesthetist and sign the consent.  "Do you understand the gravity of this procedure?"  I simply replied yes.  I thought death on the operating table,
death in the ICU,  perhaps a long lingering death intubated and psychotic in the ICU.  I thought about Meg being asked to pull the plug.  YES! I GET IT!!  But any lingering doubts were silenced by the advice from a doctor nearly 30 years ago in Pittsburgh-- if they put you on the list, you better pray they find a liver.  There is no other option for survival.  You better believe, this thing is real. 

One of the scariest movies of all time is called The Serpent and the Rainbow.   This movie is about Haitian zombies which are people who undergo horrific psychological torture while being given muscular paralyzing drugs.

OK, my experience wasn't nearly that bad, and I have not been zombified.  But I woke up after the
transplant operation (like 5 hours of surgery) still under the effects of the paralysis.  I heard loud noises of blowing oxygen and strange voices.  I was intubated which is a terrifying feeling.  I was told if I could squeeze my hands they could remove the breathing tube.  To my horror, I could not move any muscles in my hands or toes or anywhere.  This state lasted probably only a few minutes, but it was an experience I would not want to repeat.

The operation was, according to surgeons, very difficult due to my surgical history.   They were relieved that their part was over,  that I was out of the OR and into the ICU.  There was a lot of (internal and external) bleeding.  My heart beat was strong.

my parachute opened

my first entry with otx 4

it was a bit rough at the beginning waiting for the graft to kick in.  Amanda said maybe the "30 second rule"  would apply to to my old liver lying on the floor.  I was teasing that my hepatologist   Dr. Canabal ( a spaniard)  might have already eaten it.  well the parachute has opened now and I am 1 day out of the ICU and walking around!

heard the squeak

Got the call from Jacksonville very early this morning (4:30).   Lear Jet flies high and is very fast-- only two and a half hours from Albuquerque to here.  Now I am just sitting in a hospital room waiting for
the process to move forward.  So still could be a "dry run".   If it is a go, should happen tonight.  I expect about 8 hours for the operation and will likely end up in the ICU.  Will be on a large dose of  prednisone as well as pain killers.  No important decisions for a few days at least!

Don't know much about donor except matching blood type.   Having some sad thoughts for him/her and family.  I know that I did not cause their death, but don't want to be happy about it either.  I have the
donor to thank for signing the donor card, and all these people who are working hard here on my behalf.