Final Round?

Dear Ones,
Thank you for all the well wishes.  I wish I had better news for you. 

It's true that John has surprised us all over the years with his strength and resiliency, but it seems that this time, the hurdle is too high for even him.

I met with John's doctors last night, and though the MRI showed no cause for the neurological issues he is exhibiting, (disorientation, inability to speak, and loss of physical control) what it did show was new growth of the leukemia cells in his spinal column (C1 and C2 vertebrae for you who are medically savvy.) The doctor says this form of the disease has no effective treatment.  Rather than continue with the chemo regime he has been on, the doctor is suggesting at this point that we stop curative treatment, which makes him feel sicker, and begin to think about palliative, or hospice care.

He was not able to tell me how much time he has exactly, saying it varies from case to case, but he did say it would likely be a matter of weeks, rather than months, until he was likely to succumb. 

He remains at French Hospital (room 217) and will likely be there at least through the weekend.  We are getting things set up here to bring him home.

He is mostly sleeping, doesn't seem to be in much pain though he complains of occasional headaches.  He has to be coaxed to eat a few bites.  He can manage a few words sometimes but seems frustrated with not being able to express even his most basic needs.  He seems to appreciate visitors but tires quickly so if you go, keep visits short.

His sense of humor still shines through occasionally and he will make a witty comment just when you thought he had dozed off, but I think he is very tired of this battle, and why wouldn't he be?  His doctor feels sure that John would not want him to try to extend his life with heroic means if there is no quality to it.  He told me that John and he had had that discussion many times.

So we are bracing ourselves for this last chapter.  I am really hoping that his mental ability returns, and they say it still might, so that he can have the kinds of conversations I know he wants to have in these last few weeks, and who knows, maybe even squeak out a blog entry or two.  So if you pray, pray for that, and that he remains pain free and will find peace in these last few weeks.

Thank you for following our story and for your support and humor when it was most needed.

We love you all,
Dana

Here is a picture in happier times, in Yosemite, not long before the first diagnosis. 

Dear Friends and Family,
Dana here with difficult news.  John is back in the hospital.  He is fighting some sort of infection, and it has hit him hard.  I will write with more news when I have it but at this time, he is in and out of consciousness and is disoriented and unable to respond to even simple questions.  The doctors say it is too soon to tell if he will come out of this.  Please keep him in your thoughts.
With love,
Dana

The other guy was a truck

I went in for my neurosurgery on Friday at 6 am, filled out all the paperwork for the 500th time, and then waited in the pre-op area.  This big guy came in and had me sit up, and then slugged me right in the eye and knocked me out.  Turned out he was the anesthetist and he was out of juice, so I took one for the team.

What really happened is the surgery went fine, it was over before I knew they had started, done in an hour.  I had my own single room, no crazies except me since I am immuno-suppressed (wink wink).  I lay around Friday and Saturday morning, pondering the world on Narco (double Vicodin). 

The swollen eye came about Sunday morning when I went out to get the paper and walked through a couple of spider lines.  I must have been bitten; I felt the lines go across my face, but didn't feel anything, but later I started swelling up until my right eye was almost closed. 

I saw the doc yesterday morning, and he agreed it was not an allergic reaction, since it was only in one eye, so cold compresses took care of it.  This morning he tried out the Ommaya reservoir, taking out some CSF and putting in some methotrexate.  Piece of cake, done in ten minutes, much better than a spinal tap.  Stitches come out in a week or so, and the perfect Halloween costume will be ruined a few days early.

One lumpy-headed bastard.  Man, I do look like I have been through some @*%$%^! or what?

I love Manitouboo's suggestion for GPS and internet, but Blue Cross would not approve it, plus there is the no-fly-list thing.

A cheery poem from the Writer's Almanac for today:

Obituary
by Ronald Wallace

Just once, you say,
you'd like to see
an obituary in which
the deceased didn't succumb
after "a heroic struggle" with cancer,
or heart disease, or Alzheimer's, or
whatever it was
that finally took him down.
Just once, you say,
couldn't the obit read:
He got sick and quit.
He gave up the ghost.
He put up no fight at all.
Rolled over. Bailed out.
Got out while the getting was good.
Excused himself from life's feast.
You're making a joke and
I laugh, though you can't know
I'm considering exactly that:
no radical prostatectomy for me,
no matter what General Practitioner
and Major Oncologist may say.
I think, let that walnut-sized
pipsqueak have its way with me,
that pebble in cancer's slingshot
that brings dim Goliath down.
So, old friend, before I go
and take all the wide world with me,
I want you to know
I picked up the tip.
I skipped the main course,
I'm here in the punch line.
Old friend, the joke's on me.

"Obituary" by Ronald Wallace, from For a Limited Time Only. © University of Pittsburgh Press, 2008

Disco brain

My doctor is the Yoda of spinal taps.  He curled me up like a little baby, poked around and found the right spot in my back and tapped into a juicy spot, and we were done in no time.  He was riding the sciatic nerve for the last 2 minutes, but nothing worse than holding a strong 9 volt battery on your tongue for a while.  Zinged right down to the toes of my left foot.

Unfortunately, the juice he took out was tainted with some leukemic cells, and so now I am getting an ommaya reservoir installed in my skull, for the administration of chemo and extraction of fluids for testing.  This should be easier than spinal taps, and more effective at getting the chemo to the area that needs it.

You can see in this picture that the doctor peels back a flap of skin, then puts a hole in your head and inserts the ommaya reservoir, which has a small tube that connects to the cerebrospinal fluid (CSF).  That is where they want the chemo to go. 

For an extra $500, I have asked for the plexiglas window in my skull, and 3 LED lights, red, blue and green.  If I am angry, the red lights up; depressed is blue; at peace is green.  The trick is to get them all going and create a disco ball effect. 

This guy cheaped out, no LEDs (nice zipper tho):

I have to go in the hospital Friday at 6 am, and they will knock me out at 8 am or so to do this, a short operation, but I have to stay overnight, in case I seize up or start running around nekkid.  I have arranged so I get a single room, i.e. no lunatics other than me.   I had tickets to see Hal Holbrook as Mark Twain, so too bad, I bought those for someone else. 

My meeting with the oral surgeon last Thursday was useless, as he wants the jaw to heal from the infection and extraction for a month or two, so I will see him in a few weeks.  It is healing very fast.  Mike B and I went up to the Jade Festival last Thursday, and stayed at Limekiln Park, 85 miles north. 

Jade Belly Dancers

Bruce M, me, AJ (Mike and Sue's daughter)

Patience shopping for beads

We took the Ford Econoline RV, which remains unnamed.  Sue and Patience and AJ came up Friday, and we hung around the Jade Fest, listening to the music and checking out the jade and other rocks, and the people and the cake and smoothies.  I was actually well-dressed in that crowd!  The refrigerator on the RV worked great, but we didn't test the wastewater systems with no disposal site nearby.

Monday I got a shot of cortisone deep into my left hip.  It felt great right away, because of lidocaine, marcaine, Caan and Abel, cane backed chairs, sugar cane, and all the other canes they dumped in there.  Once those started wearing off, I didn't feel nearly so Abel, but the cortisone takes a few days to settle in and get to work.  Doc even said I should able to golf.  Never could before, haha.

After meeting with the neurosurgeon, I was snacking on Chex Mix after lunch.  Next thing I know I am cutting my cheek as I eat a pretzel.  Apparently I cracked the edge off a temporary crown.  How do prisoners hide razor blades in their mouths?  I was getting shredded.  I called the dentist, and luckily the permanent (?) crowns are in and he can put them in tomorrow, moving up from next Monday.  Right now I have piece of xylitol gum draped over the sharp edge.  Where did the cracked-off piece go?  I hope I don't get torn up when it exits.

The big 25 year anniversary is coming up in November, so Dana and I are looking at Galapagos Islands cruises and visiting Ecuador.  Anyone out there knows anything about this area, tell me.

Dreams

Something fundamental has changed in my life - I remember dreams, often as though they are real.  I woke this morning to the sound of someone violently retching in the bathroom next to my room.  I looked out my window to see if John had come back early from his GF's, and then looked in his bedroom.  I went downstairs and asked Dana if she was alright, and she was.  It was raining outside, and my brain converted that into an imageless dream of violent retching sounds.


Now I have to speculate that other events that have driven me nuts were actually dreams.  I searched high and low for $200 I thought I had stuffed in a toilet paper roll before the Yellowstone trip.  Was that a dream?  Maybe the sheaths that were stripped from my neurons were guarding a border between reality and fantasy.  Am I actually awake now?


I had a second MR of my skull last week, and that shows no difference from the one a month ago.  This is a good thing as it means there is no progression of any disease, leukemia or MS, in my brain.  MS gets a guess because of the stripped neurons.  This MR is also a bad thing, because we have no explanation for why I am getting vertigo sensations on standing, increasingly so, and now even when sitting at times.  These sensations are followed by an instant headache of about 2 minutes.


So, lucky me, I will go to my docs today and get a lumbar puncture (this is spinal tap) with an injection of methotrexate into my spine.  The methotrexate will travel into my brain and kill any leukemia it finds.  This is akin to setting off a bug bomb in your kitchen - make sure your good stuff is hidden away.  This is about the 20th time they have done this to me, but this time the doc will insert the needle 'blind', so to say.  Most other times the perfoming doc would use fluoroscopy, to see where the needle was going.  I guess my doc has done this 1,000 times, so I am not too worried.  In the worst case he hits the sciatic nerve, I jump 2 feet, and the needle breaks in my spine.

These are pics from the great dinner we had at Randy's:

Earl checks Paul for ear wax, and Kim checks Paul's muscle tone.  Paul chuckles

Randy is amazed that Gail ate the whole thing

Cathy licks her lips thinking how handsome Earl is, while Kris thinks she can kick Cathy's butt

Paul is about to eat all the bruschetta.  I am tellling him not to do it, or I will pour water on his head.  Dave threatens to punch Paul

Pat, Maurice and I are stunned at the bad joke that we just heard

Jeanne and Paul are freaked that Dave just sneezed into the salad

As for the RV, I met with a Chevy big engine expert in Bakersfield last Saturday, a retired man that had worked on these engines for many years.  As feared, he told me the RV had a thrown rod, and it would be about $4G to fix.  I talked to another Chevy big engine expert, man who actively repairs these, and he guaranteed he could fix it for $3G.  What to do, what to do.

I think I will have to try to unload it as is, take the beating, move on.  Anyone want an immobile RV?  Fix the engine and you can get in cheap!

So today I get a spinal tap, and tomorrow I meet with an oral surgeon about setting an implant in my jaw for a crown, then next week I see my dentist to put 2 crowns on, and start prepping 2 other teeth for crowns.  After we ruled out chemo or dental hygiene as the cause of all this new decay, my dentist asked if I used Tums or Rolaids.  I do, lots of them, because of acid reflux.  He said those are almost all sugar!  Quit them now.  Great.

Also, on Monday, to celebrate Columbus Day, I will get a cortisone injection deep into my hip, done under fluoroscopy and damaging enough that I need a driver to get home.  So waah, cry me a river.  It's just one thing after another, and the only way to make it stop is to not wake up.  I am not going there yet, my doc always has one more thing to try, and I am always curious to see what is a dream and what is reality. 

Plus, I have all this work to do before I croak.  I started back in Physical Therapy yesterday, as I want to look better before I go.  And to be able to get off the toilet without help.  I made a list of items, which Dana saw and said, 'Gee, this is grim.'  It is, but these things must be done - write a last will, a living will, get the finances straight so that Dana can handle them, write an obit (I am not leaving it up to anyone else to say nice things about me after I am gone), clean up all the messes I left in the garage and yard, make sure any assets are held in the most tax-advantaged way, and other stuff I haven't thought of yet. 

I think this is the way to do it, if you have some time.  If I could get a more precise time from my doctor, I would plan a pre-death memorial service, where you all could say nice things about me (since I would be there), and I could drink a beer or two and go out in style.  I better wake up.