Epic day

Here is Day 21 (Wednesday) photo, things are looking rattier. Note the look of quiet planning, the t-shirt askance just like Chief Broom, the wry smile. I am pondering whether I'll blow my PICC line throwing a dialysis unit through the window and making my escape. Tonight.


Thursday morning - Woke up at 3:45 and had to pee, so I went into the bathroom and started the urinal they think they are measuring my output with. Of course I have to guesstimate the 10 pees I took in the woods, bushes, and bathrooms of Stanford for them, oh about 3000 ml from the still-fearful-of-red-death bladder. So I am standing there in my undies peeing into the urinal when it dawns on me that I am getting a shower on my legs and feet, as the thing is cracked and leaking all over me and the floor. Sheesh. I clean myself up, and get maintenance to clean the rest of the mess.

I hope I didn't disturb Brian in the other bed. I get a coffee, my blood drawn for testing, grab my backpack and head to the waiting room, where I type this. And that Brian guy, he was sharing the double next door, but his ex-roomie is going downhill, neutropenic and needs the single room, and I have the only one, so we swapped rooms and that is fine if they need it, and I hope I haven't bothered Brian with a urine-soaked dance party. Which by the way, you can purchase here http://nerdapproved.com/audio/toilet-tunes-a-urine-soaked-dance-party/.

There are days that just drag by, and then there are days that you struggle to describe in a word - epic, fantastic, emotional, painful, joyful, searing, long. So let me tell you about what we hope was the penultimate day, the last day of wandering aimlessly, before today's final chemo and a bone marrow biopsy, and afternoon trip home. A day early because they know I will be fine with vincristine and PEG and they do not need to see the biopsy results for me to leave Friday as planned. And because I have mustered every ounce of politicking with nurses and doctors, goodwill, karma, comedy, attittude, healthiness, gladhanding, gifting, overpowering logic, oddsmaking, pleading, backroom dealmaking, bribery, extortion, shakedown ID theft, and almost downright demanding that now that I have lost the Zen palace I created, the room that put the fun in feng shui, I should go home a day early.


Wednesday started well; I woke at 5, a good night sleep. Dana was dozing peacefully, so I got a coffee and the nurse to draw my blood, ate a yogurt, then grabbed my book and camera and headed out. I found a nice reading spot next to a brass fountain in a little bamboo garden, and read 'Bookseller of Kabul' for a while. I strolled out to the duck fountains, where a maintenance guy was cleaning the pond of bottom duck scum. I got the whole scoop from him on the floating alligator head (yes, meant to scare away the ducks, not working) and the politics of duck control and animal lovers vs. brown fountain water. When I returned at 7, Dana was up.





Breakfast soon arrived, and I had ordered everything. Bacon, scrambled eggs, potatoes, and cinnamon blueberry pancakes for starters, a blueberry scone, some oatmeal, an apple juice and a tea. You'd think I was a lumberjack. All the usual for later - bagel, cream cheese, yogurt and a gatorade. The hand cramping is always lingering, threatening, so if I drop the phone while I am talking to you, it's cramps and I need a gatorade and to stop using that hand. I eat, and eat, then eat.





My head is really getting itchy, and I find myself pulling out chunks of hair, which makes it even itchier. Dana and I decide we don't want to take the hair removal mess home, so out come the buzzers. Get your eyebrow/lowbrow eyebrows ready. Check the video, I hope it works.







And here is the net result:




Do-Rag, KMart, $1.99. One badass mofo on your side, priceless.

I do have a leukemia injury, and I was pretty hesitant to report it to my nurse. By noon on Monday my foot started hurting, and it was because I had this blister on my #4 toe. I was wearing the last pair of socks and they weren't good, and I did like 15,000 paces on the pedometer by noon, so I had to go back and self-doctor at noon. I didn't want to report this injury because, for one, I was afraid to be curtailed or worse sent to X-Ray or put on an antibiotic IV drip, and second, I was busted. So I cleaned it and put a bandage around it and walked all afternoon. That night I owned up to the nurse, who said to clean it and put a bandage around it, and by the way, how did I get a blister like that, how much was I walking, and I blamed the socks, threw them right under the bus.

Picture of blister deleted at Dana's request. She said nobody wanted to see my picture of a blister.

Of course that blister goes in the Fiore report, so when Dr. Gala comes in Tuesday morning for Dr. team rounds pre-check check, he asks to see the blister, asks the same questions, gets the same stories, grins, ha ha, clean it and put a bandage on it, no need for antibiotics.

Now I also ask him to check this thing I discovered a couple mornings earlier, this alien in my gut. When they shaved my belly for the gallbladder surgery, they left an ugly mess, 2/3rds of the lower half shaved, asymmetrical, and it is not growing back very fast. I used to work the abs a lot, about 25 years ago I think, but all the years riding a desk combined with the steroid swell and massive eating has left an ugly mess. So I have been pondering on that when I have to use a mirror, and thought I might try to get back some core tone with some crunches thrown into the daily yoga/exercise.

I am doing crunches and I mistakenly look at my stomach, and instead of a six-pack I have a large bologna from a Spanish bar stuffed from about my navel to my sternum, like the alien is in there forming up and getting ready to charge out. Criminy! What is that? Every crunch, up it pops, down it goes, the anti-muscle. I touch it, and it is soft, like an air bladder or a wineskin.

I ask Dr. Gala about this, and he says show me, and when I do he says it is either some type of hernia or restis somethingorother, meaning your stomach is so weak that that sausage-looking tube pops up when you do a crunch. He chuckles. Of course he is about 128 pounds of maybe Indian health, all wire and brains. We'll keep an eye on it, and try to eat that old sausage slowly; it has been hanging in a tapateria in Bilbao, next to the leg of jamon serrano, for twenty years, and it won't go fast. No pictures please.

Roger Robbins calls, and he is in the hood, so let's go, he has a day here from Florida. He comes over, the Dr. team rounds check-check team shows up and checks me, I am da man AGAIN, who can stop me, I am the get-out-da-wayin', backboard swayin', game-delaying chocolate thunder. I am Darryl Dawkins? No, wait, I am just DA MAN.





Roger, Dana and I go out and stroll. We visit a lot of the campus, the church, the tower, Boo-Qwilla, and we have a great visit. One thing about being here is many friends that are scattered come to this area for business on a regular basis, so we can catch up, and it is great to hear how the Robbins family is doing.
Dana and me in the Hoover Tower.


I have on some very discreet superhero pants, and look like a guido with a bad understanding of disco. Click to closeup, Ma.

OK, flash update, it is 10:30, the doctor team just left after telling me I was leaving today! Bone marrow biopsy at 11:30, chemo at 12:30, road at 1:30. And they are not tapering me off the prednisone, instead I crash (meaning Dana is driving and I am sleeping) in the Volvo on the way home. No prednisone this morning, it is day 22, the 21 days of screaming streaming are done.

OK, back to yesterday's walk. We went to lunch at this nice little Mexican bistro, very close by in Beckman, big burritos. There were no open tables so we sat with two guys, who at first seemed reticent (superhero pants reaction) to talk, but then one man started talking about how he had just finished a one-man sailing race to Hawaii, 17 days. He described this great adventure, and since I have always wanted to sail, he had my attention. Dana was watching me and getting nervous, something to do with the ten-year commitment not to mention the money. She may be right.

As we are walking back to the hospital, one of my first doctor team doctors (I am on team 2 now) comes walking down the path, sees the superhero pants, and says 'John, how are you?', and I am trying to hide, looking totally busted. She was fine with it, and knows I can take a hike no problem. It was funny to be finally caught out of bounds though.

Roger left and Dana and I had to scramble to get to a writing class that was going from 2-5 at Stanford Cancer Center. We get there, and this class is led by Sharon Bray of Wellspring Writers and it is 15 women and me. Sharon directs us in some writing exercises. The first was that cancer is an entitiy facing you, and it speaks to you, and then you speak to it. The next concept was writing autobiographically by writing short pieces on what you remember, and what you forget, and in another exercise you could either write a 5 paragraph autobiography, or write slices of your life in 6 word sentences. Now I have to tell you this all sounds simple, but there was more pain and suffering and misery and hope and sobbing, and 15 women pouring out their stories and trying to make me cry. And there I am dredging up all my fears and emotions, jangled out on steroids, hearing about lost loves and hopes, wracked bodies, betrayal, shattered lives, up close and personal. Scotts tissue is rich on cancer. These were 3 of the toughest hours I have been through, maybe ever. The only 6 word slice I will share now is 'Never should haved smoked that cigarette.'

Feeling wrung out, Dana and I head back to F Ground. We get in the Zen palace, and a nurse that I am not very familiar with comes in and says 'You have to move.' It turns out the patient in the double next door is getting neutropenic and needs the single room. Now I have been totally lucky to have kept this room while not really needing a single for health reasons. I know that some nurses have argued to keep me in the single, pointing out that I utilize the space to create a healing and active environment, and that has helped. I am glad for that luck, but at that moment they were telling me to move I was feeling pretty put out.

I sucked it up, we packed up the Zen room a couple of days early, and I shared a double room with Brian last night, no problem. Dana found a bad hotel room nearby, and I am sitting here waiting for my chemo and now a 1:30 bone marrow biopsy. We should be in SLO by 7 pm.



The view from the Zen room F030A

Genes walking

Day 14 of induction, been here for 3 weeks. Looking pretty ragged, the hair is starting to depart. It doesn't lie flat but is actually trying to leap off my head. Eyebrows look like fishing line snag you find at the harbor. I had a good night sleep in spite of nurse torture. Dana will bring the trimmers today and I will be chrome by evening.

I walked all over yesterday, spent about 5 hours walking around, and when I got back in the afternoon it was time for a shower. However, the nurse came right in and hooked me up to potassium, which I keep coming up short of in spite of my daily banana and gatorade. Pretty common for chemo patients to burn through potassium. They were giving me these 2 horse potassium pills, and I must say they are the most difficult thing to swallow (I have swallowed 37 pills at once, a fistful) as they are dissolving before they hit the throat. So I end up hooked up to the IV pole for 5 hours getting slow-drip potassium. Jimmy S. comes by and we go get a decaf and chat.

I finish the No 1 Ladies Detective Agency and fall asleep at 11:30 after the long day of walking, and the night nurse decides that now they have to take vital signs every 4 hours instead of every eight, so she comes in and wakes me up at 1:00 to take vitals, all apologetic. I kindly give her hell, in a very gentle 1500ml of prednisone still stuck in me and more coming daily I need sleep more than food and my freaking vitals are better than yours go away hurry up are we done kind of way and if you are following my thoughts and the way I am sleeping through the vitals you can tell I think you didn't think this one through so hurry up. I am asleep again before she leaves.

I wake up at 5:00, so I got over 5 hours sleep, cool. My morning jangle is a little tuned down, the constant low-grade steroid jangle headache is OK. I am listening to Eric Clapton do Blues Before Sunrise and trying to research what they are going to stick in me in phase 2, I don't remember.

Rant warning - I have been thinking about the Earth lately, watching our candidates dance. If the American people are stupid enough to think that this election should be swayed by drilling for offshore oil that won't give us shit for a BushEon (eight years of horrible devastation), we deserve it. The Republicans showed their thinking on energy independence in the 80s when Reagan scrapped the goals foe energy independence agreed to under Carter, and Bushiot (W) scrapped them again after his Dad reinstated those goals. Don't be swayed by this knee-jerk reaction to gas prices. We have to figure out how we are all going to survive on this planet, and I am starting to stress on the general stupidity of everyone when they react to McCainiot plans to drill now and save the day. This tied him in the polls? Sounds like Attack Iraq. Imbeciles. Love your country, fear your government.

This is the gene pool I need to find. Too bad we can't just loop into those spots in time when we were so healthy and didn't know it, and snag a dose of that juju.

Dad and Leslie looking fabulous.

I have been missing my Dad lately, been wanting to sit and talk with him, just feel his presence for a while. There are certain photos that we have that just make you want to reach out and hug that person from that moment in time - I have a number of pictures of my boys like that, but this one of my Dad at 8 always makes me feel like that, like I wish I could go back in time and be his Dad and make things happier for him. Mom looks fabulous too.
The Fiore kids; Frank and Mikey are carrying some shared genes.

Here is my new jade window creation. I have been experimenting with gluing jade to wire and it works, so at 4:30 in the morning a couple days ago I started trying to get it all to hang somehow, and this works but gives me that dynamic feel, as I wait for some or all of it to come crashing down. I need clear glue too, this stuff is Gorilla Glue foamy.

I am starting to lose it a little; I feel very undirected, like I am just floating through what is left. Today is the beginning of week 4 here, new record thanks to those extra 3 days at the start. Way more bizarre than last time as I am almost completely healthy except for this annoying leukemia.

I cut back on the carbs in these meals, but I feel like they sewed a basketball in my gut. Steroid swell. I am swollen. When I walk by the atrium windows, they show this pear-shaped guy actually tipping over as he walks down the hall, and he has the general shape of my Dad in his later years, not pretty. I weigh the exact same as the day I arrived, amazing, I feel much bigger. I must have been hungry yesterday when I filled in today's menu request - breakfast was sausage, scrambled eggs and potatoes, an english muffin with jelly, a cup of oatmeal, an apple juice, a coffee and an herbal tea. I am still working on that part at 8am. Saved for tensies is a bagel, cream cheese, and fruit cup, plus a banana and gatorade for walking, and a yogurt for tomorrow 5am. As a sick tube I am working pretty well, pumping a lot of stuff through the system and hoping I flush out any crud in there.

Dana will come today and get me redirected back to the prize fight. We will spend some time figuring out how the next phase will work, and checking out apartments and stuff like that. I plan to take her to better cafes than those in the hospital.

And if you have not been checking the comments on this blog, make sure you check yesterday. I think Mac let his big dog out and that sucker rolled in everything in the blog so far, took some Owlsley Blue, went back home and talked to Mac and then Mac turned it into literature. I am going to be his agent.

Dana here...I just wanted to post this picture of Mike at prom this year. Yep, he and Uncle Frankie do look alike. Heck, they are even wearing the same vest!

(By the way, Nana, if you click on the pictures, it will make them bigger.)

Dawn from the rooftop garden

I woke up at 4:15, 4.5 hrs of sleep, good enough. Got a coffee and got going, goofing about. I decided to try to capture dawn from the rooftop garden, knowing the elevator opening hour is probably more like 7am and the code wouldn't work.

I get over to the LPCH lobby and ask the guard if he will unlock the 4th floor, but he says he won't mess with it, if the code works OK but he won't mess with it. He doesn't know much about it and does not know me. I get in the elevator and gallantly try the code and it does nothing. I try again, nothing. At this moment an EMT team rushes in with an infant in a resuscitator and they need the elevator. I make room and we all go to the third floor.

Since the code won't work, I go back to the lobby and hang around, explaining how the day guards would just override the timer if it was just after 6pm, and it was no big deal. Now it is approaching 6am, and I think dawn must be 6:10 or so, and the guard suddenly relents and walks me over to the elevator, overrides the timer, and away I go to the rooftop garden for dawn. Thanks Joseph.

It is Sunday 9 am on the east coast, so I call Billy M. and ask him if he is on the first tee; they are next up. Good luck Bill.

I made some video of the rooftop garden and tried it here on the blog, but I took it down because it was too shaky. I need to work on my video skills. I finally finished reading The Poisonwood Bible up on the roof, and when I got back to my room at 7:30 breakfast had just arrived.

The docs came in around 10 am and said I am the man again, have a great day. Dr. M got some Marley going on the iPod, we chilled for a moment, smiled a lot, and we are on track for August 8 going home. After they left, I spent the day in various gardens reading and working the Sunday crossword, now almost done. After lunch I walked over to the Stanford University Golf practice/driving range, a big range open to the public.

When we walked by this driving range on Friday, on our way back from the golf course tour, I veered us over past the driving range area. We noticed a large separate practice area, presumably not open to the public since no public was there, the University golf team practice green and range areas. It was perfect and empty, and had a tall fence separating the area from the driving range.

So I took my putter and 3 balls and gatorade, told the nurse I was going to try the third floor carpet, and walked the mile over to this practice area after lunch today, and it was perfect. Practiced my putting for an hour on this giant perfect green, and had it to myself until a coach showed up at the chipping area. He gave me a glance and went about his prep. Perfect afternoon, just for the serenity of it all, and plenty of walking.

This is my room from the entry. Note the shrubbery.

Unabashed Hope

These faces on the Gates of Hell remind me of how people's faces look when they are body-surfing and are just about to go over the falls of a bigger wave - a little apprehensive. I am having a very lazy Saturday, somewhat apprehensive. I am stuck on the IV pole as my hematocrit (red cells) level went low and I am getting 2 units of blood dripped into me, which takes about 5 hours. My WBC dropped too, still healthy, no mask, but ....

The doctors seemed to think it was unusual for there to be any slippage given how well I had recovered, but then they agree my whole blood recovery has been unusual and it may be the neupogen that I am no longer getting. At any rate, I was planning on a relaxed Saturday after a great visit from Mike and Jack, but the doctor's crossed arm/scratching chin/shifting feet meeting made me a little anxious.

Jack and Mike and I went for a lot of walks and explored a lot of the campus, probably too much. I can hear Dana saying, 'That is why your blood is worn out today.' Maybe, but more likely the positive effects of the neupogen are wearing down and I am having a more normal recovery, a little downtime.

This campus is huge. We went to one of the cafes and had a big burger and fries lunch, tested out the no gallbladder method, works fine. Looked at all the architecture and gardens. Since it was Friday afternoon there were fewer people about, but a lot of student orientation groups. It looks like a Stanford education is a deal with the weak dollar!

We found this totem of Boo-Qwilla, who it turns out is a focal point for healing, according to the sign (I hope you can read it).

We even walked over to Stanford Golf Course where Tiger Woods played his college golf. It was about 6pm when we got there, and the marshall was really nice to us, loaded us in a 6 seater cart and gave us a tour of the entire course. I should have taped it!

Now this sign has bothered me since I first came to SUMC in '05, but maybe I am just picky. Who can tell me why I find this sign funny, here at Stanford with all these smart people? Eldra? Mom?

I am going to make this a short post. They gave me benadryl to counter any blood transfusion effects and dang if it isn't making me sleepy. It is time for 2:00sie soup too.

Let's Face it

Sometimes I see tourists at Morro Rock in Morro Bay and they actually get out of their car to throw away their fast food wrapper into the gull food dispenser and trash disbursement unit. Occasionally they will be so venturesome as to approach the water and take a picture, usually of a ground squirrel. I like to approach these people and see if I can get them to line up their faces with the Big Face on BirdShit Rock and trust me with their camera. I got George to do it with a friend here. Everyone should do it. I think I got 5 people once. I always wanted to have a big concert event at the Rock, Rock at the Rock, and show surf movies on the Rock. I didn't get it done.



I wonder if there are places on this earth that are channels of healing energy. The Salinan and Chumash Indians have been using the Rock in their ceremonies for many years, and I may have found some spots here at Stanford. If you look at this Google Earth shot looking down at The Lucile Packard Children's Hospital, 200' from my room, you can see that the hospital has an open center with terraces and gardens from each floor. There is a fountain in the center of the first floor, and then more gardens off each floor. The shadows in this pic do not help - the first floor garden is half in shade. If you Google Earth these coordinates you can zoom around it better.

These small gardens create little private places where families can go and work with the universal forces they need to help bring them to completion and if not harmony, the power to go on; plants and water fountains help them stay connected to the life forces they are clinging to. And here is my point - That cement walkway that circumnavigates the very top layer of the hospital is the rooftop garden. I read there every day. You can only access it from a certain elevator and with a secret code that never changes and they will give any patient. The elevator closes at about 6pm, so if I go at 5:45 I have my own rooftop garden, sunsets, views, yell at the sky, pound my chest, but most of all I soak in all the hope and healing energy I can that is emanating up through all the floors of that hospital and those gardens below me. At least I can think that.

There are so many people helping us get through this time and space, and we appreciate all that has been offered and done, so much help from our neighbors the Kaspians and the Campbells, watching over the Fiore lads in their susceptible times. It really helps us deal with the stresses of dealing with the medical side.













This is a reunion Dana and I stumbled on, of 20 year Bone Marrow Transplant recipient/donors. It felt so hopeful!


Nick Blozan came to visit yesterday, here he is at Rodin's Gates of Hell, and looking like he just escaped! We had such a different visit than in '05. I think I was pretty sick then, and this time we were trying to figure out how to get 9 holes in on Tiger Woods' college course. The second pic we are at the Arizona Cactus Garden, in front of this giant gnarly cactus that could guard the gates of hell. The Arizona Cactus Garden is also a special healing spot on this earth, with these plants that can thrive on so little and yet offer so much protection.

We walked all around, and went to the California Cafe for an appetizer, had a great time. Nick has been like a brother to me since the day I met him, and was integral in teaching my kids the finer points of machismo cussing, emphasis, and timing. I had a large collection of Championship Softball t-shirts in large part because of Nick's ability to get people to get it done, and not look to see if you were bleeding after you got drilled by a 120mph 'soft'ball in the shin. If I threw a walk, I would hear him at shortstop - 'Would you just pull your head out??'. Love that guy. I posted his kid's pics earlier, so I need a pic of his wife Dyan so you can see how his kids ended up good-looking.

I remember the faces I had, like pictures that hang on the walls of my house, and then I am mildly shocked to find the mirror with today's face. I was organizing photos and getting hung up on the faces and remembering the aspects of joy from some of them. When I was rooted to the center of the universe through Willie Mays' chair in the Bing Dining Room, I felt I was connected to all time, that the universe was made of arteries and veins and synapses, that all these faces we had we still have, somewhere.

I am a great believer in the great cosmic soup, and a great wonderer of who made the soup. I've said before, I cannot fathom the incomprehensible, even using the other 95% of my brain, so instead I give you these faces old and new.

This is my Mom and Dad.

This is Patience, granddaughter of Mike and Sue, sweet and smart and loving life.





This is my Dad and my sister Lisa looking fabulous.

This is me at 24, before steroids.

I am waiting for the chowderhead clan to come visit, they should be here in an hour, and we are cruising campus. The new day nurse tried to lay out how I had to check in every hour, and I went over my rules with her, gave her my cell phone and pointed out how I am healthier than she is except for leukemia pain in the ass, and she was very pleasant and could see I would be no trouble if she couldn't see me. So today we really extend the borders and cruise Stanford Campus, and myabe actually find the golf course for some putting. Wish me luck.

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!