BLUE MOON HAPPY NEW YEAR!

This morning I walked into the hospital room, expecting the Lee of yesterday...but there he was, out of bed and sitting in the recliner, the TV on, sun shining in. He looked up and said, "Good morning!" I stopped in the doorway, stunned, unable to connect the events of the last few days with the person in front of me now. Once I finally found my voice I said - and this is a direct quote, "Wow, look at you! What happened?!"

What happened was a lot of good science with even more good wishes and love pouring down over Lee like a sweet gentle healing rain. It's nearly 10:00 pm and I'm still staring at him, bright eyed and pain free.

Lee is back on the road to recovery, apparently in a big way, just like that. He may even be home by Saturday. So, yeah, we're spending New Year's Eve in the hospital, but I can't think of a better way to start 2010.

THANK YOU ANGELS!!

Wishing you all a new decade of fun with the mystery...Happy New Year!

xoxoxo,

Carol

Calling All Angels

I'd like to call on all the beautiful high energy of every person out there that knows and loves Lee and gather it around him right now. He was admitted to the hospital yesterday with severe pneumonia that caused both lungs to collapse. He also has edema (excess fluid) in his legs and internally around his organs and is dehydrated at the same time. They tapped his lungs today and removed 1.5 liters of fluid, which made breathing easier for him. He also had a sigmoidoscopy this afternoon to try to find the source of his abdominal pain and his inability to absorb nutrients from food. He's on fluids, albumin (a protein that puts pressure on blood vessels so the fluid can't escape), lasix to help remove the excess fluid, and antibiotics. He's also getting blood.

In a nutshell, his body decided to roll up the red carpet it originally laid out for the new cells and draw swords. This is Graft vs. Host Disease, which he's been dealing with since the transplant in early October. Only this time it pulled a Trojan Horse and let loose an army throughout his system. If there ever was a time during this journey that he needed your highest energy, it is now. I know it will spark his will to live, which is still very much there, but is being sorely tested. It's true that the drugs and the powerful donor cells are working hard to cure him, but we all know that the strongest drug is love. In his isolation it's easy to forget the larger world and the people in it who love him. Our love is what he needs most right now, so if you have a minute to send yours, it could well be the best medicine.

Thank you!

Love,

Carol

Boing Boing

Hospital

Home

Hospital

Home

Hospit

Hom

Hos

Ho

Ho

Ho

Back and forth, fixing things when they break, adjusting medication, doctors shooting at moving targets and mysteries that are bodies in motion.  That's life for a while.  Sometimes frustrating, but the big undeniable truth.  

So is love and family and support from friends.

And my best to Sam on his journey.  He was loved by many.

Jiggity Jig

Home again

Been home since Saturday.  Oh my dear god!

The ride home home after nearly 1 1/2 months in the hospital...hard to describe

The car wash was beautiful.  Beautiful.

The Mexican market was full.  Joyful

I just watched the low and high tide of cars in the Safeway parking lot while Carol shopped.

Happy people, sad people.  People.

Sitting on the couch watching my feet

Snoozing...catching up on lots of hospital nights with only 2 hours sleep.

I'm getting better.  And it'll take some time to get my strength back.

But truly...

each moment is new.

each moment is a joy.

no future

no past

now is damn beautiful

even with fat steroid filled feet...like little manatees.

Back to the spa......

Well...I'm back in the hospital for a bit.  They're trying to get my GVHD (graft versus host disease) under control.  They know what to do, and it's pretty high tech.  They're using a photopheresis machine to take blood out of me, separate my cells, add a light sensitive drug, then put them under UV light, and put them back into me.  A little like dialysis.  They don't really know just how this works, but it does.  It kills a few cells, and calms down the rest.  On top of a pretty big rash, the new cells are hitting my liver and my GI tract.  And this machine works on it all.  Fingers crossed...but the docs are totally confident in this procedure.

I just want you to know wazzup.  At least I had nearly a week at home.  Keep loving each other.......

xoxoxoxoxoxo

Lee

I'm vertical

I've been sitting here letting my Mac warm my groin for the last hour.

I  just don't know what to say yet.

Great Love to All

From Poo to Pooyah!

The moment of truth happened yesterday. Lee had a rash from shoulders to toes. Little tiny red bumps crowding his skin. They didn't hurt or itch, they were just there. He felt nauseous, unable to eat. His head pounded. He had a low grade fever. That's the poo part. Then the doc came in, looked at the rash, considered the nausea, headache and fever...and smiled. Then he said the words we had fantasized about hearing since this saga began last May. Words we didn't know existed before last spring. And there were only five of them, "Your stem cells are grafting." Translation: The stem cells have found a happy home in your bone marrow, noticed the lack of white blood cells and decided to get down to business filling that niche. Translation: Your new immune system is growing, which is why you feel like poo right now, but you will feel better soon. From "poo" to "pooyah!!" in five little words.

I wanted to yelp and jump up and down, but I refrained because I could see that Lee still felt like the poo part, even though it all meant he was getting better. So my voice just got very high and I said, several times, "Oh my god, sweetie, it's working!"

It's happening earlier than they expected, but then Lee is always early. It also means he may be coming home this coming week...pooyah!!! Which also means I had to throw myself into happy panicky phone calls to contractors trying to move up the dates for things like carpet and upholstery cleaning, etc. We'll be down to the wire, and everything will work out just fine (which is somewhat my m.o., I like the adrenalin).

So, keep those lovey thoughts and vibes coming because they have been and still are a major part of this journey (and Lee still feels like, well ya know...).

I or we will announce the happy day.

We love you and thank you!!!

Feel free to yelp.

One more thing - and this should have been posted before the one below, but time is not linear these days - the transplant itself.

Lee was stretched out on the bed, hooked up and breathing deeply when the stem cells were brought in, looking a lot like muddy blood. Lee asked if he could say hello to his new immune system. He held the bag to his chest and quietly said, "Thank you" as tears welled in his eyes. I handed him a Kleenex, then took one for myself and one for his Mom. It hit all of us at once: this was not just another day on this journey, this was the turning point, the Rubicon, zero hour. The nurses carried on, allowing us our moment. Then Lee handed them the bag, they hung it, connected it to him and let it flow. He closed his eyes, folded his hands across his chest and gave himself over to this amazing gift, rolling out the red carpet, as his oncologist put it, welcoming the life giving liquid into his body. Della and I stood silently watching, breathing with him. The two nurses, covered in blue gowns, blue gloves and yellow masks began their active monitoring, moving around each other and Lee in a very quiet, well choreographed dance of vigilance. Checking vitals, recording every number, checking again, talking softly. All the while, Lee lay peacefully, tears flowing occasionally. Within 30 minutes, 7 million stem cells had moved into their new home. The nurses kept up their gentle, rhythmic vigil for another 2 hours.

Then it was done. The world as we had known it for the past 4 months had changed. We were looking in a different direction and it was somehow even more surreal and unbelievable. It was scarier and more hopeful at the same time. Maybe that's the nature of miracles. Lee looked more at peace than I had ever seen him.

There is birth and there is death. Then there is the second chance offered up freely by a total stranger whose sole motivation was knowing that his life blood could become yours.

The only question remaining is, how do you top that?

xo,

C

p.s. Throughout the day, nurses would stop by and wish him a Happy Birthday.

Tales From the Other Side - or Feeling Like Poo

It's Carol here, sitting in for Superman, whose not feeling so super right now. They said this would happen, so really, he's right on track, which I understand is little comfort when you're feeling like complete poo. I've had to wear a mask for the past few days, but today I had to gown up and wear gloves as well. Oh yeah, it's the 'procedural look', very sexy. So, they think Lee may have an infection of some kind, again fully expected. Actually, they want this to happen because it can have the effect of jump starting his new immune system. So, Mr. Lee is doing everything he's supposed to be doing right now...including feeling like complete poo. Hopefully, this will last just a couple more days and he'll be craving mac 'n cheese in no time (sorry, sweetie, please don't york). So, let's all just keep reminding him that this is temporary. Say it with us, Lee, "This is temporary." Whose a good boy!

Cheers and huge hugs to all of you for sending your love and support. It means the world to us, literally.

xoxoxo,

Carol

Yup Yup Yup

Today's the day.

It's a beautiful sunny morning.

Music's good.

Soaked in light.

I feel great.

The cells arrive in Denver at about 2:00 this afternoon.

The lab does some stem cell boogie tests.

They put 'em in me sometime between 3:00 and 4:00.

The team watches me like a bunch of mother meerkats.

Let the healing begin.

The ugly truth

Today,  I should be in the hospital getting ready for the transplant.  But I'm not.  I'm at home.  Trying to figure out how to say this.  I could lie.  And that would be easier.  Not really.....

OK, OK.  Just spit it out.  How many of you have ever had a zit?  How many of you have ever had a zit on your butt?  Well...a zit on your butt can be a pain...a real pain...a big pain...and it can stop a transplant.  There...I said it.  I got a zit on my butt, and since any kind of little infection can be the worst of all possible things in the land of no immune system, my transplant has been postponed for about 2 weeks.  And now I'm at home, getting IV's of antibiotics twice a day to make the bad zit go away, and I go back in on the 1st of October for the big transplant.  All cause of a zit.  Zit.

How stupid does this sound?  

I was ready...my head in the game.  

Put me in coach.

The zit froze the kicker.

That's football talk.  

That's what's up.

That's all.

That'zit.

For Real Really

Once again, it has been acres since I've updated, but here I am.

It's my last day in the hospital after 4 days of chemo.  I got word last night that the transplant date has been set.

     I go in on Sept 18 for 5 days of chemo to "create space".

     Sept 23-----Transplant.

Joy and fear.  Now it's real.

The transplant itself can so smoothly, and there are likely bumps.  And the bumps can be big.  But it can also go smoothly.  I won't bore you with all the details, but this is an allogeneic transplant...meaning using a donor.  I'm sure Google would be the place to poke around for details.  But the bumps include host vs. graft disease, infections...those sorts of things...my new immune system potentially attacking me as foreign weirdness.  The good news is that with this kind of transplant, there's a 50% chance this goat-ass cancer can be cured.  And that's the trade off.  Danger in the transplant...possible cure.  If they used my own stem cells, there's really no chance of curing this, since my own immune system has seen this cancer, but doesn't seem able to kill it.

'Das it.  Home today.  Start working on a documentary film (based on a book called "Cowboy Ethics...What Wall Street Can Learn from the Code of the West").  Hopefully I'll get music recorded by the time I come back for the transplant.  Oh yeah, and do my taxes.  Can't forget that!  And visit with friends.  And cook.  And eat.  And have lots of tests in the hospital.  And cook.  And eat.  And visit with friends.  And write music.  'Cause once I have this transplant...

"Times, they are a changin'"....

love, love, love.......

Transplant action

In the middle of throwing together a pasta sauce made with heirloom tomatoes and grilled chicken came a phone call from the transplant guru at University Hospital.   And here's the poop.

The plan is that in 2 weeks I'll have another round of liquid love from the chemo folks.  Then, three weeks after that, roughly the 8th or so of September, I'll go in for the stem cell transplant.  Holy Crap!

Yesterday, the third potential donor came up just short of perfect (as a match that is), so we'll be using a guy, in his mid to late 40's, who lives...somewhere.  The other perfect match was a woman of a similar age.  But since she had had a baby, it made her less desirable as a donor.  All factors are factors.

So now the bone marrow registry folks get in touch with the preferred donor, let him know what time frame we're hoping for, and see whether this guy will be in Pago Pago for three months, or if he's available now-ish.  From wherever he is, his stem cells get coaxed out of his body, and sent to us, and into me.  Wow.

So as I sit here recovering from chemo, there appears to be the makings of  a plan.  Not without fears.  Not without risks.  But soon a plan will be afoot.

It is all good.

But I'd still rather make pasta.

And eat it.

And vanilla ice cream with fresh plum sauce.

Am I fixated?

Perfect

OK.  It has been quite some time.  So let's start from right now, and work backward.

This past Friday I got word...great word...that the hospital has found me a stem cell donor!  Two donors actually.  Two people showed up as perfect matches!  I just sat here at home and blubbered and heaved like a six year old.  To say it was a relief  just doesn't get at it.  So starting today (Monday, 7/27), the transplant team will look at the potential donors,  decide which will be the best, and come up with a plan.  Hopefully, this means that when I'm deemed "in remission", the transplant can happen...which might be very soon.  But I'm quite sure that this will all shorten the chemo journey and get me on the road.

And all this was happening while I was conducting "Chitty" here at the Buell Theater in Denver.  Now I  don't want to sound too woo woo, but the week doing shows was as soulful, healing and energizing a time as I could have imagined.  So much love from the cast and crew.  So much support.  Just to be in the energetic field of 30 singers, an orchestra and thousands of people in the audience...that's what healing and reclaimation is about.   Really, I'm a lucky guy.  Really lucky.  It was a fucking riot!!

All this was because my docs set my chemo schedule to allow me to feel good after this last round, and give me a chance to conduct my show.  And just before doing the show, Carol and I went up to Steamboat Springs to visit our friend Amie Knox and Jim Kelly.  We spend a couple of days at their ranch, wandered around with Maggie the Dog,  did some time in a canoe, slept to the sound of the Elk River, and just generally spent time in the sun and fresh air.  And this was all after a few days throwing compost, gardening and planting in the front of our house (told you I was working this story backwards...).   

So please know that this chemo-mook is doing really, really well.  Things are perfect, really.  I'm gaining weight, eating everything in sight, did the gardening, went to Steamboat, did a week of shows and have a transplant donor.  I mean...what more could I want right now?

And Aaron is here for the week.  

All's well.

True Blood

Friday morning

Pandora is saving my life...listening to Debussy, Faure, Albeniz, Mompeau, Satie...

I can't deal with TV...too much... to much weird energy.

My last bag of chemo will be hung in a few minutes, and then I'll get a transfusion... true blood, and not the Japanese vamp food in handy six packs.....

This round of chemo is not nearly the hammer that the last round was.  I generally feel good, even a bit wound up because of the steroids that compliment the chemo, so sometimes it's hard to relax and fall asleep.  I've also discovered that exercise is a big help, especially when feeling a bit on the low energy side...fight the fatigue.   I use those big exercise bands, especially for upper body work, and there's a stationary bike that faces a window to the east of the hospital.  Great for evening lightning watches.  I did 25 minutes last night.  Felt great.

"The Elegance of the Hedgehog".  If you need a good book.  Finished it yesterday.  Beauty, art, and being your authentic self.  I loved this book.  The first 50 or so pages left me wondering if it was the most pretentious book I'd ever read, but after that, look out, the story turns, and the reason for reading is glorious.  The writing, sublime.

Quiet

Checked into the hospital yesterday.

Chemo overnight.

Chemo today.

Listening to the i-pod.

Reading "The Elegance of the Hedgehog"

I feel good.

I feel quiet.

I feel centered in the experience.

I feel hungry.

My Chef Salad just arrived.

I'm gonna eat, and then wait for that milk shake from DQ to arrive.  Gotta be centered in my milkshake.  Priorities.

Sheep Shearing Day in Denver

Yup...I've got big ears.

Really big.

Never knew that.

Champagne helps

Always does.

But how do the sheep feel?

They don't get champagne.

Freedom

It's kinda amazing when, after being told you can'ta go there, you shouldn'ta walk there, you shouldn'ta touch that, and by all means, don't breathe in that crap......

you are cut loose

walk down the street 

you can go out for dinner

have a cocktail

take a deep breath

eat an apple

huh

pretty

good

no?

Yeah, there's always a flip side.  When isn't there?  My brother, turns out, is not a match for a stem cell transplant.  The search is on.

I think maybe I'll have a martini tonight.

Gin

Olives

2

Tunnel Vision

It has been a few days but, well, time files.  The nurses call it medical tunnel vision, when you get so focused on this process of chemo, blood draws and other appointments, that that's all you really see and deal with.   I had an appointment with a shrink who talks with all patients who are on the track to have a transplant, and that opened up a whole new can of wormy feelings about the length of this particular journey. 

Yesterday (after that appointment), I got a bit scared and angry and embarrassed and resentful and, duh, really cranky.  I guess it's understandable when that happens, but no fun when that happens, especially when someone you love (Carol) is the recipient of the fallout (so sorry).  I had an afternoon of trying to get some control of the unknown...some black and white picture of a field of grey.  In other words, a recipe for total frustration.  I looked in the mirror and saw a gorilla.  I got nailed.  So now, it's time to look more closely at the fear and anger and embarrassment that this cancer brings up, and see what's to be learned.  Time to sit on my cushion.  I've been away from it for too long.

On a more practical note.  I've had a couple of transfusions of platelets over the past few days.  These are the little goobers that allow your blood to clot.  The nurses told us that platelets are always in short supply.  Everywhere.  Blood, not always, but platelets, for sure.  So if you ever have the inclination to donate blood, please consider a platelet donation.  It takes a little more time (an hour or so), but it will help someone, somewhere.

Stillife

I had this dream the other night.  Stillife in Dreamscape.  

Imagine, (those of you with Mac computers, the Spaces application)...one large square with a horizontal and a vertical line...creating 4 squares within that one big square.  Each square had the same image...a dense forest/jungle...ferns, dense foliage...no movement, just a still picture.

Then, zap...my field of view is just one of the pictures, and the light slowly, slowly begins to dim to near black.  Then...zap...lights up, and I'm looking one of the other, identical images.  Slowly, slowly, the light begins to dim to near black.

The voice in my dream says "this is the experience of nearing death".  Just a dimming of the lights.

The message inside the dream also said "It's not your time.  And...it's not scary".

The other piece of info that showed up as I was waking from the dream is that all those squares were realities, and my experience of life, or death,  was nothing more than an experience of which reality, which square, I'm in at the time.

So...dat's it. I debated for a day about whether putting a dream on this page was just self-indulgent wanker-wanker.  I'm still not clear...but my impulse was to go ahead.  I'm really in the middle of the low blood-count thing, so for the next few days, I'm hangin'.  Dreaming.So much for going out to hear some music.  And as I found out yesterday, jeez, my mighty Steinway is a bit out of tune after 7 months on the road.  She does sound pretty, though.

Bubble Boy

One of the beauty's of chemo is that it pretty much destroys your immune system..for a time.  So after my fine bout in the hospital, I got a shot of goo (Neulasta) that brings your white cell count out of the basement that it is in the process of falling into.  And while all that is happening, going to Starbucks, or licking the handle of the elementary school door is just a bad idea, so the docs say "stay out of crowds...don't do any gardening (crap), don't eat fresh fruit (unless someone else peels it) and cook any veggies".  Fun huh? 

 As one nurse commented, think of this as a forced retreat...something that lots of people really would like, but never have the chance to take.  So that's being taken to heart.  Lots of internal time, and not much external stimulation.  Meditation.

And speaking of the Neulasta shot.  Since this stuff stimulates your bones to create more white cells, the caregivers say that you'll feel an ache in your bones...most likely your big long bones...thigh and upper arm.  I woke up and all that ached was my nose.  Now I know that I have an Olympic sized schnoz, but who's idea of a joke is this?

So more trips to the doc this week, maybe a platelette (sp?) transfusion, and hopefully I'll be able to hear Jeff Jenkins and company do their Coltrane concert at Dazzle this weekend.  He played me the Coltrane changes for "Summertime" this morning.  I wept.

The Four Month Hangover

Before...?

After...?

Home from the hospital after 5 days of chemo for Mantle Cell Lymphoma (a Non-Hodkins type).  Not so bad if you like this sort of thing...

Think of a 5 day bender, followed by a massive hangover to match.  Dazzit.  I don't feel too awful, just a bit pooped, a bit foggy, and now, due to low blood counts, we can't go out for cappuccini.  Not for a few days anyway.  Poop.

We love all of you and want to stay in touch...so this seems like the best way to reach everyone in one swell foop (without lining the pockets of ATT).  Thanks for all the love, the calls, the cards, the gardening help, the visits...and just having you in our world.   xoxoxoxoxoxo