Leon Williams & Dave Prieto Quartet

Here is a little sampling of yesterday's Atrium concert with Leon Williams & Dave Prieto Quartet. First attempt at a video snippet on the blog. We'll see how it goes.

Harps and Angels

They have brought me a shrubbery! It's not the 10' Jacaranda or Maple I had hoped for, but it is a fine little planting of roses, flowers and ground covers. It needs to acclimate, but will be fine.

I found the spot where the gardeners hang out and let myself in, introduced myself to Jesse who seemd the eldest and maybe hefe. In my best broken Spanish I told him I needed a shrubbery outside my barren window, and he asked me to meet him at 8am next day. I was hoping for a better translator by 8 the next day, but Dana and the boys did not get here until later. Dana did go out and find Jesse, who cleared it with his boss to put in this small planting and keep it watered and thriving. So, I have a shrubbery. Mikey says I am like Red in The Shawshank Redemption, who can get everything in the joint but can't get out of the joint.

It is 6am Thursday, Crosby Stills Nash and Young are playing Deja Vu on the iHome and iPod salvaged from the bowels of our house (Our House is playing, oddly); everything is mellow. Without much walking yesterday, the prednisone played out the ambien by 2:00am, and then plowed through the atavan by 5:00am. So it is catch up time - Mac sent me this poemery,which I thought I'd share:
"Holy Cow, where art thou
Alarming is the stillness that quiets this blog
Rejoin to us your beingness
Allow that we can feel your life
And learn from you the truth of soulfulness
We’re many who wish you well and care
Here to see you through this scare
And share with you the world you’ve captured
Collect more jade for us to regard
Wear Lowbrow Eyebrow art once more
Those are our nutrients for designing lore
That you gave birth to from this site
We choose to walk with you – by your side
And hug your soul
Now c’mon, get your butt back here "
Mac

Mac's poemery evokes in me the same spirit I got from the harpist, the sadness of what hadn't been done but was intended, things past but never regained, not lost but not yet found, just out of reach, our gnarled fingers not able to make that final stretch.

Now he emailed that to me and maybe didn't mean to share it, but I am taking a swing. My return poemerization is still brewing.

These guys love hospitals:

They were watching me get my PICC line maintained - change the oil and filters, new calipers, wiper blades and tape removal of 50000 baby fine hairs.

The family came up on Tuesday and got a hotel room, so we hung out Tues. night and Wed. While we were sitting around my room Tues. afternoon, one of the wandering musicians came by with her harp and offered to play, so we all squeezed in and she played us some tunes that were uplifting and sad at the same time, Dana and I crying and the boys in Huh? mode. Her name was Barbara and she had changed her last name to Telynor which means harpist. Barbara was a successful kidney transplant many years ago, and through her music, she, and others like her in the hospital, work to absorb some of the stress that is thick as Beijing smog here.

Of course after all that stress relief it was time for a battle for world domination - RISK. We all went out to the Atrium and took over a big table and started playing to the death. Johnny and I are masters of Risk and expected to dispatch with the lesser players soon, but a few fateful turns of events created an obvious pasting of the Johns, and Mom and Mike went on to dominate the world in short order. I was simply too greedy about North America and couldn't hold it, fell like 50,000 Aztecs to Cortes. Canadians didn't do squat either.

Next day they all came back and I waited and waited for the doctors to come by, but only Dr. Jonas came by early and said everything looked good, my counts are fine, I probably didn't need the mask today, but let's see what the team says. Now the doctor team usually rolls in around 10:30, spends five minutes poking me and and asking questions, and they are happy to see I am doing fine and give me as much free rein as you can get. Yesterday, they never showed. So I made the executive decision that I was free to roam with no mask, and we took a walk and booked a reservation in the Bing Dining Room for 1:15.

Back in the Atrium the 12:30 Jazz Band was setting up - Leon Williams & Dave Prieto Quartet - Jazz, Blues, Bossas & More. We sat down and listened for a while, until we had to go lunch.

When I sat down in the Bing Dining Room, the waiter told me Willie Mays was just sitting there right before me. Say Hey Willie Mays, right here in my seat. He is a patient here. The hostess asked if I was a 'special' patient also, and for once I had to say I wasn't, just ordinary.

The specialty of the Bing Dining Room is the Kobe Beef Burger, served only well done (?), so the boys ordered that and Dana had a Thai wrap. I had already eaten my 11:30 am breakfast, but I picked up some of that Kobe beef and some fries. It was all very lovely. Sitting in that seat where Willie Mays had sat, I had this sense of deep mahogany roots that ran right through my ass and the ass of the chair, down my legs and the chair legs, through the floor of the hospital and deep into the ground, rooting me to the earth and stabilizing me with the planet, intertwining with all the roots and life in the earth. Fleeting but transcendent.

Since John and I did not feel right about being trounced at Risk, we had a rematch without Dana, and Mike absolutely crushed us again. He is loading the dice somehow that we can't figure, maybe fingernail dirt or easy karma?

Somehow this got me to pondering (again?) on old games and sports equipment. Going through the garage before coming up here I ran into my old softball glove, and I couldn't part with it. I had this image of playing catch with a grandchild and couldn't let it go, so it stays in the garage. I remember going through this phase last leukemia round, wondering if sports were over. There is still golf and surf, and they are getting to be harsh mistresses. My legs could not take the cold last time in the water, 48 degrees, and I cramped like an elementary school on a full moon. I won't give that up yet, especially cause I always sucked so it's not far to fall. Is this the same for women, do they lament the loss of each sport as it becomes too painful?

I married an angel, and she looks out for me at all times. She accepts my foibles, pushes me to be a better person, loves me relentlessly, laughs at my mid-vomit jokes, guides me to be a better Dad, and stresses for me. This is far more stressful for her than for me, trying to hold it all together while I sit here listening to Joe Cocker, looking at my shrubberies, wondering whether to poop before the docs get here - it always seems to bring them in.

Docs just came in, and my whole team is changing except Dr. Vidal. They answered the following questions: They have my marrow typed. It will take 2 weeks to type the siblings'. If a sibling marrow matches, we are back here right away and moving on. When I get my day 22 Vincristine and PEG and my counts stay just as they have, I am free to go, 3-week wonder just like last time, home on the 8th. My counts are as good as yours, I should be golfing. I asked if there were some scenario where I get that last PEG and Vincristine in SLO, and they said it was too far should things go haywire. So, I am fully dialed in, the docs actually take a moment and relax in my room. Dr. Liedtke actually sat down in my new garden window chair, I think she is pregnant. I can hang another week. Eyebrow Lowbrow may have to wait until I am back in SLO. Lunch just arrived, I finished my 10:sie bagel an hour ago, I need to put on the pedometer and take advantage of the freedom. Nick Blozan is coming at 4 or so and we'll go eat somewhere.

A special thanks to all who harbored some WBCs through the shelling, most have returned and are fully geared. Next time I will bring them corporeally.

Crabby typist

And even that is a typo! This was day 9 of chemo; that's day 12 on the right

Last Friday Dana came up, and even though I was on the mask it seemed like a good chance to go show off my new secret Arizona Garden. Of course the light wasn't perfect, but it was nice. Back at the room things started progressively downhill, with the steroids building and the space confining. We tried playing some cards (meaning Dana whomps me at Gin), but my hands were turning into crabs. The index finger of my right hand wants to sit alongside my pinkie finker and my thumb wants to stick out the other side. I have to press my hands together in prayer or press them flat on the table to straighten them.

The hands were getting worse after dinner, so I asked the nurse if there was anything to do, and she offered vicodin. So I took a vicodin, an ambien, and an atavan and went to sleep. When I woke up I felt pretty good, all vital signs intact. So I ate my bacon, eggs and potato breakfast, and redeposited same breakfast intact in the toilet ten seconds later. And it was all downwhill from there. Fought those stupid cramps all day, and the overdose of sleeping meds.

I felt better later so Dana and I knocked around, had to teach her cribbage so I could beat her at something. It's getting close though. She's a quick study. After dinner we watched "Charlie Wilson's War" and sat in the umcomfortable chairs. That night I dreamed that I was somehow tied to this uncomfortable chair and couldn't move. When the movie did end, my hips felt like they'd gone 3 rounds with the Russian hockey team; I could barely shuffle along. I asked the nurse for the combo that worked for sleeping the night before and she brought it.

Back in 1992 Johnny and I were sledding down this icy patch and went over a bump of ice. We both went airborn and in trying to cushion his landing I maximized mine and broke my coccyx. Damned If I'm not lying in bed in Palo Alto 16 years later with the awful feeling like I just broke my coccycx again!. Absurd? But that crappy little "We don't really want guests for long" chair conjured up some old juju, so here comes nurse Druggett with some more vicodin. I finally fall asleep with lots of drugs. When I wake up later in the afternoon I am really hungry, my coccyxx is sore but not broken, and I heat up the soup from lunch. It lasted longer in the microwave than it did in me. So I played 'House' yesterday, trying to figure out what I can eat. I finally settled on tuna sandwich at 2pm and all is well. Just an ambien tonight please.

Dana left Monday afternoon and is coming back today (Tuesday) with John and Mike for a visit. The doctors just gave me some good news in that I am no longer neutropenic and may get to go home a week early (again), like day 22! I can't help but think that some of that idyllic downtime provided by you all for my WBCs really helped; check out where a bunch were hanging in Nicaragua. The trick now is to not get ahead of yourself and just take it one day at a time. Sister Lisa's test kit is already on the way, the magic kit!

Randy Pausch

If I can be a tenth of this man I am happy.

Randy Pausch Died July 25,2008
His Last Lecture: Achieving Your Childhood Dreams 1:16 min.

http://www.youtube.com/watch?v=ji5_MqicxSo

He says it for me

Crampin my style

Dana here. Guest blogger, at John's suggestion. John is having a rough day today. It started with cramping legs and fingers yesterday, and then, maybe as a result of the mix of meds, vomiting this morning and continuing lethargy today. (I have a clutch so I will spare you the gory details.) We did get out for a short walk but he's wobbly and woozy and mostly just wants to sleep. I know he wanted to blog today but between the cramping and the sleepiness, it will have to wait until later. He did eat his lunch and seemed to rally for a bit. We requested that today's visiting musicians visit the room but they haven't made it by yet and John is sleeping now again.

Hopefully, the next entry will be by your usual, and far more entertaining host. I will leave you with a quote that was left on John's breakfast tray this morning by "The Spiritual Care Service" here at Stanford. It was strangely comforting to me.

"It is only the women whose eyes have been washed clear with tears who get the broad vision that makes them little sisters to all the world." Dorothy Dix

Keep those good thoughts and prayers coming. We appreciate every one.
Love,
Dana

Rage, rage against the dying of the light

Outside my window is this barren space of decomposed granite. To the left is a walkway down to ground floor and an employee entrance. So when I sit in my window reading spot I can watch people come and go, but my landscaping really needs help. I need a shrubbery! Someone bring me a shrubbery! I am thinking a 10' Japanese red maple maybe, in a 5 gal. tub, maybe with some flowers planted at the base. Or a nice Jacaranda, or something that would attract birds. If I can get Dana to go get something from the local nursery I don't think anyone would notice if I just plopped it outside my window. I'll go out to the garage not 100' away and get it out of the car and bring it down. Maybe some gardener would come along and figure it was supposed to get planted there. In the worst case I will prune it way back and bring it home.

I wrote this letter to the editor of the Tribune 0n July 4th. This was in response to some man that had suggested we'd be better off if we went back to the time when it was a crime to criticize the government, because we were engaged in war (WWI) then as now. See http://www.sanluisobispo.com/182/story/408612.html, but I'll quote myself here:

John Canaday (Letters, July 3) longs for a return to the time when it was a crime to criticize the president. He can have his brand of patriotism today, in North Korea. In America, a true patriot loves our country and has the courage to speak out against injustice and attacks on our American Constitution.
When our government, sworn to “preserve, protect and defend the Constitution of the United States,” instead did the exact opposite over the last seven years, the patriots in this country spoke out against those abuses and continue to do so.
Others choose to wrap themselves in flags and lapel pins and not consider the criminal actions of the current administration and the long-term damage to our country. Had they thought it through they’d realize that to be a patriot means
to love and defend your country, not your government.
When government abuses the powers it has been granted by the people and trashes our Constitution,
American patriots speak out and take action against those abuses. We do not silence the critics. (in our land of liberty and justice for all =this was cut).

For whatever reasons , genetic, birth order, environment, I have been railing against the injustice and unfairness of the world, but very meakly. I give myself all this credit just for mustering a letter! I bet most of us have railed, and like me, most of us get more caught up in the day-to-day of life and don't have the willpower to take action against the darkness. The local newspaper here, The San Francisco Chronicle, details the local daily shooting count, 74 so far this year. It's like Iraq, only it's gangs and robberies. It's nuts. Rats in a cage.

Back when we were idealistic and ignorant (the '70s), we thought we could save the planet from people. It was obvious that the closed ecosystem was the earth, so that was the biota you had to figure out. Sure you can save the banded dune snail or the grizzzly bear for now, but what about when there are 40 billion people. The wars for resources are only going to escalate, and it will be a real doozy when that resource we're fighting for is water.

Phil Caputo wrote in his short story 'Alone' (in Wild Stories)

"We pay a price for a consumer culture such as ours, a culture that demands its instant gratifications.....Our bodies pay a price.....We pay in lowered quality of our moral lives. The more we despoil the less civilized we become.... John Muir wrote that each alpine wildflower was a 'mirror reflecting the Creator.' Maybe you don't believe in a creator, so put it like this: Through that window we can see the grandeur in all creation, from atoms to
galaxies; we can catch at least a transforming glimpse of something bigger than ourselves, something ineffable to remind us that consumption isn't the point of being human."

I love America and what it stands for, the freedom and responsibility to shout out when something seems wrong. I am as guilty as anyone of succumbing to my need for gratification instead of trying to fight for one injustice to be fixed. It seems so overwhelming and hopeless these days, as we read about the raping and killing in Darfur, using half our tax dollars to destroy a country and then try to rebuild it while they try to kill us; the Taliban making a comeback in Afghanistan: Osama bin Laden getting a pedicure in Pakistan: war criminals hiding as faith healers in Serbia: albinos murdered for their 'magical' skin in Tanzania: liars and luddites that think drilling for oil today will change tomorrow's or next year's gas price.

The warning sign regarding dependence on foreign oil was put on the wall by Jimmy Carter and torn down by Reagan, rehung by George HW Bush and torn down by his ineptitudeness GWB. If this is a great country, it is time to see the obvious and start treating the earth as though we can't escape what we do to it. Look at those photos of Beijing; what is going to stop that? Certainly not driving a vehicle named for the Spanish fleet on the Pismo Dunes for fun.

We need visionaries, not status quotians. These guys are rebuilding their vision with siesta in the garden. 5 benches, 5 siestas. I did not wake them, it was 12:30.

Not sure what set off that 6am ramble, sorry about that. I think I must be feeling guilty because I had such a promising start to being a rabble-rouser, could've been huge, but I only turned into a mild rule-stretcher and really only when it suited me. Get mad global and have a Starbucks local. I am guilty of being ordinary, of committing ordinary acts of self-gratification. I console myself by looking at my two boys and hoping they will do great things, leave the place a little better than it is today, but then, they are playing XBox.

Turns out yesterday was Vincristine day, day 8 of chemo, 2 mg IV push, no big deal. My blood counts remain acceptable, and I was able to roam very freely yesterday, put 11778 steps on the pedometer (I only wear it when I am out walking, but I shuffle about looking at stuff - probably about 6 miles, not 8). My WBC is trending downward, so I expect to be back on the mask today. Dana did not come last night, it would have been ten pm by the time she got here so she stayed in a comfortable bed. I took an Atavan and an Ambien and slept from 11-5, like a baby.

Here is my Prednisone-induced eating schedule:

6:00 am fruit cup from yesterday, coffee

7:30 Breakfast - scrambled eggs, bacon, maybe potatoes, a scone, herb tea, coffee

10:00 Oatmeal from breakfast, banana, maybe bagel and cream cheese

12:00 Lunch - eat main course, set aside soup.

2:00 soup and crackers, fruit cup, Gatorade (starting to get hand and feet cramps)

4:30 Main dinner plate, set aside soup and dessert for 7:30.

7:30 Soup, dessert

I've thrown in a mocha from Starbucks the last couple of days, as my coffee consumption is down so much. Feed the Prednisone beast.
In reponse to many questions about Prednisone, this from Wikipedia:

"Prednisone is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It can, therefore, be used in autoimmune diseases, inflammatory diseases (such as severe asthma, severe allergies, severe poison ivy
dermatitis, systemic lupus erythematosus, ulcerative colitis, rheumatoid arthritis, Bell's Palsy, Crohn's disease, pemphigus and sarcoidosis), various kidney
diseases including nephrotic syndrome, and to prevent and treat rejection in organ transplantation.
This medicine may also reduce the sex drive. Prednisone has also been used in the treatment of migraine headaches and cluster headaches."

I just got my Prednisone, it's 9:00 am, I am hooked up to the IV pole getting some potassium, 30 minutes. My WBCs are low enough that I am neutropenic and will have to wear the mask today, but that's alright, it needed to happen. I will change into some walking gear in a minute. I ran out of socks some days ago, so these are walking on their own, just about. Imagine guys walking 100s of miles with no shoes in winter, hauling everything to stay alive, and at the end of that march fighting a battle so that we could have free speech?

DO NOT GO GENTLE INTO THAT GOOD NIGHT Dylan Thomas
Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light.

Turn and Face the Change

Here is the daily picture, but I changed the spot to get a better angle and light, and I am showing my teeth so we can watch them degrade with chemo. They will look like 2 point buck antlers, with that green fuzz, in about 2 weeks, after they nix brushing with anything but that crappy little pink sponge on a stick. Here is Mike Beauchemin's face after he had to look at my face on chemo.

Here he is normal, not much difference. He is sending me the yoga poster in the background, practice, practice, practice.
These three are the Blozan boys, and this picture really struck me because I can totally see aspects of Nick and Dyan in each kid. I need Nick and Dyan photos to prove my point.
And this is my Las Guapas cheering team, that recently scaled Half Dome and then base jumped back to SLO using only stale Pita bread from Yosemite Lodge. These women are smarter and stronger than me, so I am glad they are on my side and don't mind me making up stories about them. They moonlight as Bounty Hunters.

I was reading this book at home called 'Guns, Germs and Steel', kind of scholarly, not a quick read, but very interesting in how it shows the ecological and societal factors that allowed humans to spread to the parts of the planet they went to, and what advantages they gained depending on where they went. Now I am reading 'The Poisonwood Bible' by Barbara Kingsolver, about a family that went to the Congo as missionaries, and it really strikes me how the 2 books intertwine. The poor missionaries could not see the futility of trying to transplant their ideology to the Congo without first understanding the whole ecology. This seems to me to be rampant in the world today, as we try to shove our ideologies down others' throats with no concern for how they came to be the way they are.

It is 9:15 am, and they just rammed 120mg Prednisone and a Protonix down my throat, hooah, should be humming along any minute now. The doctor team just left, and let me just say I love my doctor team and they love me. All 6 of them come in every morning just beaming at me, they are so pleased to have someone that is doing well. They told me this morning that my WBC count is still in the healthy range, and even better, I do not have the Philadelphia chromosome so I won't need Gleevec (the happy drug).

They confirmed that we have probably caught this very early and that is why my bone marrow is still working somewhat - I am maybe in the state I was in in January '05, when I just started noticing odd things. And the very early catch should mean an easier path to remission.

Yesterday was really a pretty good day in spite of lack of sleep. The doctors took me off the mask as I am healthy, but I couldn't shake the IV pole until 1:30 because I was getting magnesium and potassium, typical deficiencies. At 1:30 I cruised, from one good book reading spot to another, took advantage of the 'extended by rule of John' perimeter of the hospital. I found some great spots I'd never been to - this below is a small part of the Arizona Garden, an incredible array of cacti and succulents.

Including the after dinner walk I put on 9912 steps, about 5 miles. I feel good, and I have to walk off the steroids.The doctors asked me this morning how I was able to put on so many miles within the hospital, and I told them that the corridors are full of art and I travel all the side corridors also, as well as the perimeter areas (not a lie). I did not elaborate further. If I get sicker we will tighten the rules. I told nurse Gwen I went to the Oakland As game last night.

I took an Atavan last night at 9:30, and Ambien at 10:30, and slept like a baby until 5:15, when I awoke and swore it was 7:00. I had the sensation I was late for work, so I got out of bed and put on my morning warm PJs and hat, to scare anyone out of my way on the way to get coffee. This is my early morning garb - Kim Zerbe made me the hat, a Zerbe Derby! I am styling, and there is no question but that I am the Chief Bull Goose Looney on the F Ground ward. Look out Nurse Ratchett!

Steroid Rambler

Billy Myers inherited a Pink Rambler Classic from his sister back in high school, and man we had fun in that car! I am starting the daily photo so we can see the effects of chemo on me over time - I will try to take this same picture at the same time each day.

4:20 am So please forgive the long and twisted blog. It turns out 120 mg of Prednisone will kick 10 mg of Ambien’s ass every time, especially if there is any other incentive to open your eyes, question your bowels, wonder what that noise was, feel that wad of stuff that you can’t quite swallow in the back of your throat, or jump out of bed and try to capture the effect of all the ambient light in the room. I woke up at 2:30 and I’ve been fighting it since, third day in a row. Tonight I will go to heavier artillery and mix an Atavan with the Ambien. I have the stupid acid reflux again, so the night nurse brought in some Mylanta and I’m hoping that will kick in. I walked 4.65 miles yesterday, 8784 steps, and you’d think that would burn off some of the steroids. Shoot, without that walking I might never sleep.

In that time between 2:30 am when you wake and 4:00 am when you finally give up on sleep, in the midst of relaxing techniques and attempts at emptying the mind, instead I get filled with the wonder of the universe. Is it possible that I stepped through some funky wormhole back to an alternate 2005? Is this something like February 14 2005? If the universe is ever expanding, and there are tens of billions of galaxies, maybe 100s of billions of galaxies, is it even comprehensible? If you are in a place with starry skies and you can see the Milky Way, our galaxy, ponder the incomprehensible. The more I have ever tried to understand it, the more I know I can’t, and the act of faith is to know I cannot know. So I could just be mixed into a parallel time/space and going through the exact same shit, only different.

I have been taught in the scientific method, and always look to figure out what survival advantage was gained by any behavioral or physical aspect of an organism or species. Unfortunately one conclusion I come to is that there will always be individuals that will claim to have the direct connection to the all-powerful all-knowing essence, and that they are not necessarily motivated by good intentions. Examples abound from the dawn of man. The caveman that could explain the eclipse became the shaman. Etc. etc. And somewhere back in the ages, some Italians settled on Ischia, a little island off the coast near Naples. They had some survival advantages – I know this because I am here. And over in Ireland (or England or Scotland, which is it Mom?) there were some other people that made it through the conquerings, the massacres, the plagues and famines, because they had survival advantages.

Now all I have to do is to tap into those survival advantages that are being carried around in a whole bunch of people; I have to figure out how to get every Irish-English-Scotch-Italian Northern European mutt in New England and New York to go get their cheek swabbed. I think this may be a huge advantage for any given gene pool, to identify the saviors in the population, the ones with the best new mutations. I have always thought that eventually the whole population of earth will become heterogeneous, as advances in transportation allow interbreeding to occur. We attempt to stop this socially, but it is only a matter of time, or so I thought. But it could be that there are mysterious biological forces at work, chemical scents that push us towards our own. Dana is almost the same gene pool as me, Irish/Italian. I should probably get serious about tracking the family genealogy.

I am working on ideas to advertise in New England and New York if none of my siblings match, maybe banners at Boston Garden, an ad in the NY Daily News, internet spamming. We’ll cross that bridge if we have to. Meanwhile I have mentioned to my siblings to take care of their bone marrow.

Many of you are sending good thoughts my way, be they prayers or moments of focus, and I do believe that regardless of what you call them or how you do it, there can be a channeling of energy towards a core healing. In the dark hours while I ponder all that is happening, I try to gather that energy and focus it inward, to tell my body to heal itself, to kill the little mutant blood cells. It seems to be working.

I was standing in front of the mirror after shaving, getting ready to go for my after-lunch walk, and I had this thought that I should focus every step as a step to healing. I was repeating this mantra, ‘I am healing, every step I heal’, and I started to go back to Zumwalt Meadow in King’s Canyon Park in my mind. I am walking down that trail around the meadow, and the light is just emanating from that meadow, and it gets brighter and brighter. I am trying to walk into the center of the meadow and soak it in, and I get some of that healing flash just as in ’05, and it brings tears to my eyes, just as it does every time I retrieve that healing memory. It brings the overwhelming sense that I will be alright. But I can’t focus long enough. Instead I notice that I need to trim my nose hairs, and I missed some spots shaving. Focus! I have to work to get back to that place.

I had a great day yesterday after a rough start with the early wakeup and diarrhea. (I am backing off the Metamucil before they insist on the white hat.) At first I was feeling nauseous at 7 am, but I told myself it was hunger, and it was. Sausage and eggs and I was fine. All 6 doctors piled in my room later and said basically ‘Well, you are the man, sucking down chemo no problems, taking charge of your space, we are taking you off the IV after you get potassium and magnesium today.’ Yippee-ai-o-tai-ay, m@%&*f$%^&*er (that’s a movie quote, Mom, so I can say it – Die Hard). I asked the doctors what they thought the time frame might be, given I am not sick yet, and they said it wouldn’t be as short as last time, but that the Neupogen they are giving me this time will shorten the WBC recovery cycle. Maybe 4 weeks. Last go around was frankly miraculous in 21 days, and how many miracles can one man ask for?

I also asked John, yesterday’s oncology nurse, how I came to get the single room. He told me it was pure luck, it was the only room available the day I got here, if I had come the next couple of days I would be in a double room until I became immune deficient. So as much as I railed the mistakes that seemed to waste 3 days, I have to think it was meant to be. Just about everybody else lays around in their beds, and I think it is partly out of kindness to each other, so they don’t disturb each other. And I think their ill-feelings are infectious, too. So I was pretty lucky.

So after lunch I am done with the IV, gather up a book, the crossword, a notebook, and off I go, free to wander. I am wearing the mask but so what. I am not neutropenic yet but they want the mask on. I push the boundaries of where I am supposed to roam, which is not outside the perimeter of the Hospital. I think that is an ill-defined border at a teaching hospital, and the intent of the rule is that if I collapse someone will find me. Well there are thousands of students walking around, and I have an armband on that shows I am a patient, and everyone has a cell phone, and I feel better than the last time I golfed, so what the heck, I roam.

There is a four-piece jazz band playing by the Children’s Hosp. cafeteria. The music echoes off the buildings and fills the space in a pretty cool way, so I listen for a while. Today there will be some kind of music in the atrium right here outside F Ground (home). I go to my secret rooftop garden and do the crossword and read for a while, then I go to the Stanford Cancer Center where I find the perfect massage chair sitting in the hallway of the second floor. Only problem is the remote is so beat up I can’t get it to work – too bad because I was going to use the calf massage unit. It teased me a little, then dropped me as though I was unworthy. Hey Bruce, talk to corporate, I wonder if Relax the Back wants to make a donation of a refurbed chair?

Next I wander out to the fountains. As I approach there is a young dad and maybe 10-month old girl in a stroller, and she is just bawling. I think, well, this will be relaxing, but I sit nearby anyway and think, don’t complain, they were here. The fountains are nice because the sound of the water is soothing. The young dad is trying to distract the girl by pointing out the patos, the ducks, and the patitos, the ducklings, and the fountains, but she does not care. Inside my head I am saying ‘Pick her up, she wants you!’ He actually starts yelling ‘Look at the ducks!’, and I can see he is getting frustrated. Maybe his wife is in the hospital. I am actually thinking that I am going to have to take this guy down if the shit goes down, and he is in good shape, 25, and I am not.

Oh ye of little faith. He picks up his daughter, coos to her, walks her all around the fountains for a while, and she is perfectly soothed. When he comes back by me he sits on the ground fifteen feet away and puts his daughter standing by his feet while he supports her, and they practice walking. Watching them I get the sense I am seeing a moment, maybe first steps, and sure enough she takes a couple of exploratory steps and Dad is exhilarated, exclaiming his joy. It was great. I asked him as I left if those were her first steps, and he said they were. I wished I had the camera with me because I may have caught it, and I was left wondering about Mom and hoping she wasn’t inside the hospital and would blame herself for being sick and missing the baby’s first steps. Yin yang.

When I get back to my room it is almost dinner time, and danged if they didn’t have the best meal yet. Topped the SLAC generated salmon from yesterday – cilantro grilled chicken breast with parsley red potatoes, man it was good. And hey Mac, I know it was all natural because the chickens are all running around in the gardens and there were fewer yesterday than Monday. If you have Google Earth, put in Stanford University Medical Center, and you will see as you zoom in the letter H for SUMC RDO, 875 Blake Wilbur Drive. I am in that building. Just to the north you can see the Lucile Packard Children’s Hospital, and you can see all the gardens on each level including the perimeter rooftop garden. To the south you can see the fountains, and if you zoom around you can see all the little secret patios and gardens (thanks for pointing that out Cyle).

I felt so good after that dinner that I walked all around again, another 2 miles. I went over to the Rodin garden again and listened to some knowledgeable person talk about the sculptures to a class, and when I came back it was time for 8:00 snack. Lo and behold, there is ice cream in the kitchen’s freezer, free-for-all, those little cups that won’t give you acid reflux. So I mixed some vanilla with half of one of Kirstin’s cookies, and had my best dessert yet. Sure I paid for it this am maybe with some acid reflux, but the fire is quelled. The nurse told me Prednisone may be what is firing up the acid reflux, so I will just make them leave the Mylanta with me so I can take it at my need. A small rule breach, but I can’t see stockpiling Mylanta for some wild party.

I just remembered I saved soup last night, and had my 6:00 am breakfast, mushroom soup with crackers. 7:00sies should be here any minute.

Today I get shot #2 of Vincristine, 2mg, an old cancer drug made from Vinca minor, commonly called Periwinkle, out there in your garden. Over the next weeks this 1x/week shot will numb my fingertips and make me a lobster for Dana’s arts and crafts fair in room 30. They will come pump me up with Prednisone soon, and I will try Qigong or Tai Chi again, but I keep getting it backward because the instructor on the DVD is facing me. Does it matter to my chi? Will I be yang-yin instead of Yin-yang? And hey Mac, Jack LaLanne does live in Morro Bay, he used to come down to the rock in a big Cadillac and sip wine. He has never had acid reflux, nor ice cream, nor cake. He can swim to France towing a nuclear accelerator while filming exercises for the geriatric bunch. He may be the next governor!

I have been trying to make this blog show comments and only the current post, but I am failing. So be sure to click on comments and check on the ramblings and ravings of the ones I love. Man oh man I can’t imagine Mac on steroids; that would be something. And I love trying to follow Pat’s leaps, keeps me nimble.

Heading downward

Here is the picture of me taken on day one in the Garden of Rodin Sculptures, in front of Rodin's 'Gates of Hell'. On top is 'The Thinker'.
And that's about how I feel this morning, like I am through the gates and swinging downward, into the abyss. The chemo is starting to have it's way with me, and I can feel my blood starting to weaken. Just little things so far, tougher to walk, calf cramps, and I woke at 2:30 and was cold, as though my metabolism was a little suppressed. Josie the night nurse brought me 3 heated blankets and fixed me up; felt like I was in a spa for a moment.

I foolishly forgot about the other stuff I brought with me, like acid reflux. They substituted chocolate cake for the carrot cake I ordered, and I absent-mindedly ate it while talking on the phone to Dana. I woke this morning at 4:30 with a damn reflux attack. Remember how I said send dark chocolate? Nix that. Here is what you can send me, which you all have been doing - good thoughts. Theresa brought me antacid liquid, plus I drank 2 glasses of water, and the fire is dampened, but who needs that? Too bad, I love chocolate.

This phase I am going through is called 'Induction', and someone (who said that?) pointed out to me that I had already gone through it once, so this is really 'reinduction'. My tour of duty was 'extended'. I get a sense of how unfair that must feel to our boys in the Middle East. This is kind of like our war in Iraq; they come in, blast the hell out of all the infrastructure at huge expense, and hope the people don't reject what gets put back in its place. I mean aren't we witnessing host v. graft rejection in the Middle East? Let's hope I do better. In fact, is Osama bin Laden a little leukemic cell, been hiding out in some part of my body like my gallbladder? Let's catch that little bastard and send him throught the gates of hell. Focus.

I walked about 3 miles yesterday, 5543 on the pedometer and each is just about a yard if I take big steps, like on the golf course. So there is your challenge. In the middle of the after lunch walk (2787 steps) I got a nice cramp in my left calf, probably lack of use in the last few weeks. When I got back to my room Dr. Rhee came in and said they could take me off saline IV as I seemed well-hydrated. I was compelled to tell him about the cramp, and he had to change his mind and I am still on saline IV this morning. However, Dr. Jonas just came in one minute ago and said they will end the saline IV this morning as I am flushed of Daunorubicin and well-hydrated. My blood counts are descending slowly but still in the low end of healthy. So I will be off the pole and on the mask, free to roam.

Nurse Jana came in yesterday afternoon with these 2 large needles, PEG-Asparaginase, 1675 mg in each, one for each arm. She built it up like she was removing a bullet and we'd run out of whiskey - gave me a stick to bite, told me to take a deep breath, get ready. I said jeez, just do it, it's a shot and I have had hundreds. It didn't hurt at all. Later it felt like someone punched my arm. I love how pain can just be so fleeting, and sometimes you can act the tough guy and impress the nurses.

I am definitely sending some WBCs on vacation to Albania, where Cindy is working and hanging with the locals. That's Cindy trying to fly, I think. Doesn't look like much for waves, but pretty serene looking.

Rule breaking 101

Man, what a start to today. Nurse Cindy comes in for the 4:30 am stuff, pills/vitals. I am pretty sleepy still from last night's Ambien et al, but I figure I'll empty the bladder and then catch another hour. I go pee in the peepot, and this one has a warped lid, so I put it down on the toilet and I'm trying to snap that lid shut so the nurse won't be spilled on, and I can't get it shut. Ever have the steak slide across the plate when you're trying to cut it, and off go the peas and potatoes, shooting across the table? Well, off goes the urinal, sliding across the toilet and spilling all over the floor. Nothing like a urinal full of toxic pee at 4:30 am. I did the hully-gully dance fast enough to avoid any, but had to make the embarassing call to the local haz-mat team. They cleaned it up and didn't say anything. I did not get back to sleep.

Yesterday was very nice, except I didn't break rules fast enough. Cyle and Kirstin came with cookies, could be the title for a kid's book! And Cyle brought a Pirate book, yarrggh mateys, avast! Cyle is the VP of engineering at TEC where I work as Director of Operations, so we have been through the gauntlet together with the housing downturn. He and his wife are people that give me hope that the world can be made better.

The rule I didn't break soon enough was to get off the IV pole. Had I done it right, I would have got off the pole and gone to lunch with Cyle and Kirstin at the Bing Dining Room. As it was we strolled around and I showed them some of my coping spots like the gardens, but the visit was too short and somewhat frenzied by bladder madness.

After they left I asked Boss Gwen why I was on saline, and she answered that they wanted to ensure I was hydrated and getting enough nutrition. I said "Gwen, look at me, look at what I eat and how much I drink," and she agreed to ask the docs. I figured that was an answer I'd get Monday, but she came right back, couldn't get hold of the docs and unhooked me from the IV of her own accord. Awesome, no IV pole, no mask, one last day of freedom. Only regret was I hadn't asked before Cyle and Kirstin arrived.

After the daunorubicin my bladder is reduced to the size of an espresso cup, and with the IV saline going and the fact that I am only supposed to pee my toxic discharge in my own bathroom, I have limited range. My poor bladder now gives me about a 2-minute warning, max, so I plan around the bladder. I know every secret bathroom from here to Stanford Cancer Center, the ones where I can pop in and do a toxic pee in private, double flush it, and hope I don't kill anyone. It is either that or stay in my room, or wear Depends and that ain't happening for so many reasons. Poor bladder was so slammed by the red death it is shrinking up like the boys' boys out surfing the Rock in February.

I spent the rest of the afternoon strolling the grounds, making calls to ensure my sibs are taking care of my (future) bone marrow, and sitting in the gardens reading. I went over to the Stanford Cancer Center, and it was wide open and completely empty. If I was a thief I would have made off with all the art and computers etc., but the karma hit would be huge, plus I am not a thief. It struck me as wrong though. Anyway, I remember that the SCC is nearly empty on weekends, and has some very peaceful lounges with nice views and available beverage stations and private bathrooms, everything I need.

When I get done with this phase and it's time for the outpatient treatment after the BMT, SCC will be my new home away from home, with daily visits for treatments. I ran into Maura, who had just left F Ground on Thursday, and she was just coming from a treatment, the first of 48 weeks of outpatient treatments. She looked good and jazzed to be free, and gave me an image to shoot for, healing warrior.

Last night's salmon dinner was pretty good. I saved the soup, bread and applesauce for a later snack.

When I finally got back to my room, just ahead of dinner at 5:00, Gwen comes in and tells me the docs say I have to go on IV. Dang! Just one hour before Barry, my brother-in-law, will be here, and I was going to break at leat one more rule and walk around the University campus with him. He is an architect and there are some great buildings here. I should have hid, like the day of signup for first grade at St. Peter's school, it worked then. It would have been tough to hide and find Barry, because I never know which entry people are going to use when they visit.

So when Barry arrived we hung out, and then I gave him the tour of gardens and halls. He brought a bag of goodies from Dana, things I'd forgotten like shirts (!) and the amazing lost/found/lost/found Ipod. I have plenty to do; I actually went to bed thinking I had too much to do. Ridiculous. Combine 120 mg of prednisone, some OCD, a little too much coffee, and watch me spin.

Okay, it's 6:30 am, I need to work out, maybe try this Qigong exercise DVD, eat breakfast, take a shower, and reorganize the entire Fiore digital photo collection on this external hard drive. Back on the mask, but we'll see how many steps I take in my after meal walks with the IV pole.

I throw down this challenge to all of you, but specifically to Bill Myers and his hip recovery, and to Mikey and his half-marathon training - walk more miles than I do. I'll post my miles every day, and you beat it the next. I am already starting to feel the decrease in red cells, and it will get a whole lot worse, so I dare you to keep up!

White Blood Cell Spa Treatment

Done with Daunorobucin, and I ain't going to count how many to go. Finished cyclophosphamide day one.

It occurred to me that the last time I was in this situation, there was a time when I needed all my friends to send me some of their toughest white blood cells (WBCs). Somehow we did this through the cosmic neural network - see the entry http://johnsleukemia.blogspot.com/2005/03/got-any-spare-white-blood-cells-man.html Well, things are different this time. I am trying to get unhealthy, because in spite of my bone marrow clogged up with leukemic cells, there are plenty of warrior cells raging around and kicking ass. I need a place for WBCs Kevin Garnett, my mom, Joshua Chamberlain, Tiger Woods, Paul Pierce, the guy who sawed his arm off when he got stuck in the crevasse, and Fox Fallon, to name a few.

So here is my request. I don't want to kill off the warriors, I want to send them on vacation, a hiatus, someplace where they can work off their PTSD, to healthy people with not many infections to fight. Here is how we do it. Once again, each of you that can tap that neural network that sent me your best WBC fighters 3 years ago, now retrieve my remaining best fighters and give them a nice spot on your beach, a 9' fun shape board, some sunscreen, a hot-looking WBC chick, and let them recover. They get a 2-3 week vacation before I need them back.

So please, if you think you can take in a healthy WBC for a few weeks and show it a good time, do so. Also, a lot of people are sending me good thoughts and praying for me to get healthy. This is tricky business. I need to get unhealthy first, then get healthy. Maybe I am being too micro-managing here, and God understands your request in a more overall way. Let's go with that, I shouldn't try to manage God. I was going to say pray for me to get unhealthy, but that doesn't make sense. It's 5:30 am and I am already pushing.

I had a very depressing moment yesterday when nurse Gwen came in with the HEPA mask and said it was time to start wearing it every time I leave the room. Although my blood counts are high, they shouldn't be because my marrow looks like the 405 in LA at 5:00 pm on Friday night, so therefore let's be extra precautious. Totally bummed me out as I didn't expect the mask until Monday or Tuesday. I am expecting some visitors today, and it is so much nicer to go walk around and be able to talk without the mask. So I pled my case to the doctor team, and they gave me a reprieve until Monday!

I did the first of the post meal long walks last night after dinner, just like old times. As I write this blog, I can't help but think I have said most of this before, 3 years ago. So forgive any repetitious stuff. Dana did not think 'Chips 'n Duds' was a good cookie name, so I am changing an ingredient and renaming them 'Chips 'n Buds', if that isn't already taken in the Medical Marijuana clinics. That will sell better. I could sell lots here.

One thing I have to be glad of is that I get much better anti-nausea drugs than were available in the past. I salute those of you that ever went through this shit without Zofran or Kytril or any of the other stuff they have now. The nurse came in this morning, took my vitals and said "You look pretty damn healthy for someone that just had three days of Daunorubicin and a smack of Cyclophosphamide." And that is again a bizarre thing, I look healthy, tanned, more or less fit, compared to the rest of the crew here.

When I was signing up our business for a new bank account I was dealing with this 30-year old gal, and she called me up and said she couldn't make out some numbers on the application. She asked my birthday, and after I told her she said "Oh, I thought you looked pretty good for a 72-year old!" Sheesh!

As I said I get some visitors today. My boys at home are not getting it done, didn't get my bag of goods together in time for Cyle to bring, and are living in denial. They are due for some reality.

This morning I will watch rich Republicans hit a small white ball in high winds and the announcers complain about how grueling it is for them to have some lackey carry their bags around and tell them where to hit it, while they stroll around eating power bars. I love the British Open because the pros finally look sorta like the rest of us, hacking out of the rough, the ball going twenty yards, and then they're rubbing their wrists.

Hey, that would be a good spot for some WBCs to hang out, on the golf course. Zerbes, got room? And aren't there some of you with resorts in Costa Rica and Nicaragua? Hawaiian time shares? Let's go, step up! How much room can a WBC take?

Tethered and wired

Tethered to the IV pole, and wired on 120 mg of Prednisone. It is 6:00 am, and I've been up since 3:30, inventing new stuff for the patient, like the PICC-Pocket and the IV Camelback. The night nurse came in at 4:00 to give me Zofran, miracle anti-nausea drug and every chemo patient's best friend, and since I was awake she pulled blood from the IV for my daily tests. She was waking Dana while trying to get enough light to work with, but I opened this nifty little book light I was just about to use and Dana managed to get back to sleep.

Last night I was in an agitated state, because I was trying to maneuver around this room, with 2 chairs, my bed, Dana's cot, the old nursing technology, the new nursing laptop station, and every other damn thing in here, and I kept getting stuck on things. Each time I have to stop short before I yank the PICC line from my arm. Every time I move I have to think whether to turn left or right so the IV line wraps in front of me. I have to remember whether I am on battery or plugged in.

To make matters worse, yesterday was day 2 of Daunorubicin, which means pee-o-rama. You do not want the red death in your bladder any longer than is necessary, so I drink a bunch of water just before they give me those 87 mg, to make a pool in my bladder to dilute the stuff as it lands. They push it in through the PICC line, IV push, takes about 20 minutes. They are also pumping in saline (always) and magnesium because I am low.

Anyway, after my water cushion, the saline, the Daunorubicin, the magnesium, and then I start drinking more water, guess what? I have to pee like a race horse, every 30 minutes, with about a 2-minute warning. No holding this toxic blast, and it has to be in my bathroom because it is toxic, and it has to go in the cup not the toilet, and you don't want this stuff on you. When the nurse empties the peepot, they cover toilet with a disposable pad before they flush so they are not exposed to red death in the mist. I drank 10 glasses of water and 5 cups of other liquids after noon. I filled the 1000 cc peepots 5 times by day's end. Hooah. So, dancing through the room snagging on all the obstacles trying to get to the bathroom before I pissed myself and burned a hole in my leg had finally put me in a state of annoyance by day's end.

It was a funny day anyway. We read that they had DVDs at Guest Services, so we went to check that out. The gal there asked what types of movies we were interested in, so we asked to see the whole list. She came back with a Post-It with 9 movies on it! Criminy! Dana asked about the salon services that were bragged about in the guest services pamphlet as "available to patients and their families" and it turns out they can shave your head. Solidarnosc, Dana! She declined. Back in F-Ground, we were telling the receptionist the funny DVD story and she took us to a storage room in F-Ground where there were hundreds of VHS and maybe 50 DVDs, all just golly wompus in these bins. Turns out there is a VHS player in every room, in a cabinet marked 'Nursing Supplies.' Double crikey.

So Dana and I grabbed some DVDs and videos and came back to the snag zone of my room. I had to plug my IV pumper back in, as the battery was low, further limiting my mobility. I go to put the VHS in and discover there is an old tape stuck in there. I put on my surgical garb (a frown) and extract the tape by pushing Eject and yanking, like delivering a breach baby. We watched 'Eternal Sunshine of the Spotless Mind', which was just as good and weird as the first time. A true love story, just like Dana and me.

Another couple of days and I will be Chief Bull Goose Looney here. I had maintenance fix my leaky sink day 1. Yesterday I told them that they need to oil all the squeaky doors, especially the main hallway door right next to my room. With all the doors in the hospital you'd think they'd have a person just to lubricate things and keep it quiet, but the fact is, hospitals are noisy. There are big solid wooden doors on all the rooms, but the double squeaky banging hallway doors and the doctor/nurse cluster discussions going on overpower them. And this bed I am on pumps up and down whenever you move, trying to provide better support and customized firmness, so it is always groaning.

The other thing I notice now that comes with the new (since 2005) technology is the ambient light. I like to sleep in the dark. Even the light of the moon will wake me. The screensaver on the nursing laptop station 4 feet from my head turns on randomly (background programs), so I have been turning the monitor off when I go to sleep. There are also 2 lights I didn't notice last go around, one built into the wall and one mounted under my bed, presumably for safety. Here is my thought on that. I have a light switch on the nurse call box on my bed. I have a light next to my bed. The nurses turn on lights as needed. I can read the damn poster across the room with all the lights out! I think the nurses should put LEDs on the toes of their shoes if they need it, and maybe change out this old light with some LED for patient safety. Brian, Cecelia, you out there?

One more pee-o-rama day today, last of the Daunorubicin. Dana will go home today and come back midweek. I will rearrange the room to give me better pathways. I cause a lot of the snaggage problem myself with laptop, external HD and camera cables. Cyle, Kirstin and Barry will visit on Sunday, and Kirstin will bring chocolate chip cookies that you'd fight a bar full of Crips and Bloods to get to.

That sounds like a good name for a cookie, Crips and Bloods, or maybe Chips and Duds. That may be a good way to end gangs, humiliate them with takes on their names. New Chips 'n Duds from Crips and Bloods. Think they'd be pissed if I started a company called Crips and Bloods? Too bad, if I piss on them they die, or their kids are born with six eyeballs. Salad Maratrucha Dressing, only 13 grams of fat, brought to you by Newman's Own, all proceeds buy teddy bears for kids. Aryan Nation Newspaper, black and white and read all over, published by the ACLU! Let's just preempt all the stupid gang shit and maybe it would put a dent in the attractiveness to disadvantaged youth. Or not. We all know the answer, and that is to increase the opportunities. Enough rambling.

I like to sleep bare chested, but with the constant IV line I have to improvise, so I slide my shirt down the line and wrap it around the handle of the IV pole. I took an ambien last night to slug through the prednisone, and fell asleep reading. The night nurse came in for a vitals check a little later, and unbeknownst to me unhooked my IV and removed my shirt. When I got up at 4:30 to get some coffee I was mystified, couldn't figure out how my shirt had gotten off the IV pole.

I should have gone out to the patient kitchen shirtless, that would have taught them. When they took out my gallbladder they shaved the lower right 1/3rd of my stomach. Not pretty, and I lost the six-pack I thought was there somewhere in the 300 gallons of ice cream that killed my gallbladder. But I threw on a zip-up hoodie with the IV hanging out the sleeve and went out and asked Mendy how and where my shirt went, made an agreement to get a new shirt after a shower later, got some coffee, and I am typing topless in the dark while Dana snoozes away. I need a shower badly, so I will bust out the PICC sleeve in a minute and clean up. I last had a shower Tuesday, yuck, but I am not exactly doing any sweat work. Of course if they don't get these squeaky doors fixed, or I have fight a bunch of gang members here in the hospital, I might be sweating soon.