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.

The Gates of Hell

Dana and I took a walk last night over to the Garden of Rodin Sculpture, which include his Gates of Hell. Pretty cool. There was also a tennis tournament going on, and we saw that Serena Williams was the #1 seed, but that's all we saw. I got to walk around outside because they hadn't started any chemo yet, so I am fine still. Here is a picture of my room.












My mailing address here is:

Stanford Hospital & Clinics
F Ground Unit, MC 5616
JOHN FIORE
300 Pasteur Drive
Stanford, CA 94305

I won't be allowed fruit or flowers because I'll be nutropenic, so just send chocolate...dark preferred.

Yesterday started with me venting to the doctor team that they (Stanford and SLO docs) had just wasted 3 of the more obviously finite days I have remaining by not getting these biopsy slides here, or by not leaving me at home until they were ready and I could have brought them. They looked at me like they hadn't ever considered that our days are numbered, and that some of us have a smaller number. It wasn't their fault, but I had to vent. After I told them how it should have gone down, they asked what I did for a job. I told them I kick asses and take names, basically. I had jokingly introduced Dana as my wife and attorney, so they may have been pondering their words.

At any rate, we now know the course of action. They have the biopsy results, and there are leukemic cells in my bone marrow. The gallbladder was like the canary in the coal mine and we just hit a methane pocket - the canary is dead but we may save the miners.

They put a Peripherally Inserted Cardiac Catheter (PICC) in my left arm yesterday, for chemo in and blood tests out. There is a picture of the PICC line in 2005's February Guided Imagery post. I do not want to bore you all with the same gory details I posted back in February 2005. Let me tell you what is different. We have broadband wifi access, which is great. This time I can't post pictures yet, not because of AOL, but because I grabbed the wrong USB cable.

Today they will start the whole chemo routine just as last time, a slightly updated induction phase as called out by CALGB9511. Three weeks of shutting the marrow down with Vincristine, Daunorubicin, Cytoxan and Prednisone, then when all the leukemic cells are dead, they hope there is some healthy bone marrow left to get going. You leave the hospital when your blood counts return to a decent level.

Once I am in remission are two possiblities. One is we find a sibling bone marrow match and begin that process ASAP. Two is we don't find a sibling match and we begin the much longer process of scouring the general population as registered in http://www.marrow.org/HELP/index.html. During this search period I will continue on maintenance chemo, just as before. Also see http://www.marrow.org/DONOR/When_You_re_Asked_to_Donate_fo/Steps_of_Donation/index.html
Assuming they do find a match, they will slam my bone marrow with chemo much harder than in the induction phase, because they do not need that marrow anymore and want to kill any little bastard leukemia cells out there. Once they have me prepped, the god-like creature known as my donor will be given filgrastim for five days. This puts the needed bone marrow components into his or her blood, which is then withdrawn, centrifuged for the needed components, and injected into the recipient. Piece of cake. Not long ago, the donor had to have something like 50 bone marrow corings, like a bone marrow biopsy only 50 times worse. If you know a person that is a bone marrow donor from 3+ years ago, don't mess with that person, they are one badass badass. (Debbie Gordon, you go girl!)

After I get this donated bone marrow injected into me, the real fun begins. My body will either accept it readily and begin to fight any remaining leukemic cells (host v. leukemia), or won't accept the donated bone marrow (host v. graft) and all the complications begin. If that happens, the doctors begin the balancing act of keeping my immune system weak enough long enough to allow the donated bone marrow to be accepted, while still keeping me leukemia free. Tricky business.

Because of these conditions, once the bone marrow transplant is done you are required to stay within a short radius of the hospital for daily treatments. We will have to rent an apartment near here for 3 months. Sheesh. Best case scenario is I am cured and living at home by year-end. All of this was pretty overwhelming to Dana and me yesterday, and today it still is overwhelming. But, a walk of a thousand miles starts with one step. And some moleskin and good shoes.

Afternoon update: The chemo is dripping in. For you chemo nuts, here is what I get (today is day 1):
Cyclophosphamide, 2330 mg day 1 Kills everything
Daunorubicin, 87 mg days 1-3 Makes your pee orange, check the photo. The Red Death.
Vincristine, 2 mg days 1,8,15,22 Makes your fingers and toes numb
Prednisone, 120 mg days 1-21 Hooah look out for the grouch
Peg-Aspariginase, 3750 i.u. day 5 and 22

This afternoon I also got the bonus bone marrow biopsy! It turns out that this new crop of leukemic cells has the ability to change the cytogenetics of my bone marrow, meaning I could have that @#!#% Philadelphia chromosome that I avoided last time. Of course then it meant I would go straight to BMT, and that is where I am going anyway. What it would mean now is they would add Gleevec to the cocktail party. This afternoon's bone marrow biopsy showed that my marrow is clogged with sheets of lymphoblasts. It is so clogged that the doctor could not aspirate enough fluid for one of the tests for cytogenetics. She went deeper and deeper, but no go. She went so far in that I wiped out on the wave I was riding at Morro Rock and got flushed back to reality.

So, it turns out they are the ones kicking ass and taking names, and I am powerless to resist. I am scheduled to get sicker tonight or tomorrow, but plan to resist. My blood counts won't tank until next week, so bring on the cookies!

The White Hat rides again

Dana and I arrived at Stanford yesterday afternoon, after waiting in SLO in the morning for the call that said a room was available. I have a nice single room, not as big as room 44 before and without the double doors, but I am not sick and they need that room for someone a lot sicker than I. Apparently we rushed up here to secure a bed more than anything else, because they can't do any chemo treatment until they get the actual slides from my gallbladder and bone marrow biopsies, which are in SLO. I wish there had been some way to get those to bring with us, but it is done.


So Dana slept in the osteoporisizer, a special cot they have for spouses that insist on hanging around. They were on clearance from Abu Ghraib. I got an IV with a bunch of saline solution and I am back to measuring my ouputs. The white hat (poop collector) awaits me. I had been having frequent bowel movements, but as soon as the white hat came out I clinched up like a sailor. Just like old times, Dana and I cruised around the hospital, and now she is out picking up a few things, and I have just finished hospital dinner.


Here is what we have learned that they are going to do. Since they found lymphoblastic cells in my gallbladder, they assume there are lymphoblastic cells elsewhere. They will break out the big guns and blast away for 3-4 weeks, shut the whole bone marrow down and then restart it. Then we find a bone marrow donor, probably a sibling, and in October or so I get a bone marrow transplant and everything is groovy. I will breeze through this, just like last time.


One difference is last time I was very sick when I got here, and this time I am not, at least my blood isn't. My blood tests have been fine all along, so the doctors here need to see the gallbladder and bone marrow to help them work up the specific chemotherapy regimen or cocktail they will give me. It is odd that these lymphoblastic cells were in my gallbladder, and a couple of spots of them on my liver, but they didn't show in any blood tests. I wonder if I will actually tolerate chemo better this time than last given the healthier start. Or, will it be worse, since this time I have further to fall.


This afternoon I talked them into removing the saline IV so I could walk around without the IV pole; I just promised to drink a lot of water. They were going to insert a PICC line today, but now I think that is tomorrow's job. They are getting small tests out of the way, so I had an ECG this afternoon, my heart is fine. All in all a most unevenful and boring day. I am going out to the garden now and read a book. Dana is still shopping! I think tomorrow the action will heat up - PICC line, nasty nasty big nasty chemos like danauribicin and who knows what else. And the white hat has been put away for the moment.


So far this has been like when back in junior high, one of the bad guys calls you out after school for looking at his girl, or for thinking you're cool or smart. You sweat it out all day long, and then after school you get all revved up, you're ready to go, you go over to the designated beating spot and nobody shows up. Tomorrow the action begins.

Book II - Road to BMT

As you may know Dana and Mike are running the Nike half-marathon and helping Team-in-Training raise money for the Leukemia and Lymphoma Society. The TNT team made me an honored teammate, and in my bio for the team I wrote the following

"However, one thing that will remain with probably every cancer warrior is the thought that this is not the end of it. And in many if not most cases, it isn’t. The cancer will return, or another type of cancer will return. Every chemo treatment you get has a potential side effect of causing cancer. Every day at some moment I ask myself, is it back, how do I feel? If I get a nosebleed I go get a blood test. I read about that 11 year-old girl in Pismo that recently died of ALL, after a 5-year remission, and it saddened me that she wasn’t as lucky as I, and that we hadn’t yet found a cure that worked for her.

So that is why what all of you (TNT members) are doing is so important. When I was in Stanford, I was the lucky person that comes through once a year and doesn’t really get sick, from disease or chemo. I went on long walks 3 times/day, and I always went through the Children’s Hospital to the rooftop garden. The kids looked so sick, and all I could think was how difficult it must be for them and their families to go through this. The treatment that some research team is going to come up with will save some lives, maybe mine, maybe some little kid’s and his family's lives. I know it would destroy me to have to bury one of my children. "

That was an emotional plea, and it has come home to roost. Tomorrow I am going back to Stanford to begin the process for a bone marrow transplant. The leukemia is back.

About 3 weeks ago I started having serious acid reflux attacks, enough to put me in the ER ruling out heart attacks. This led to some testing of my gallbladder, and finally they removed my gallbladder July 5th. I met with the surgeon 5 days later, and he told me to call my oncologist, the biopsy showed lymphoblastic cells in the gallbladder, i.e. the leukemia had returned (or something equally nasty). I met with Dr. Spillane the next day, and he said get ready, we're going back to Stanford next week. . He did a bone marrow biopsy the next day, and now it is Sunday. He reassured me that this was going to work out fine, his most recent patient just had it done six months ago and is doing fine.

Barring any new development I am gearing up to go to Stanford tomorrow. I have lots of questions and no answers yet, predominantly "If we haven't identified a donor yet, why would we start the Induction Phase?" The Induction Phase is much like last time, 2-4 weeks of high-dose chemo to shut everything down, then presumably a bone marrow transplant from one of my siblings that starts it all out clean. There is a method to it all and I just am in high anxiety sorting it out.

I think subconsciously I knew this was coming. I had been prepping my office for the demise of me, but I thought it was so I could golf more. I reorganized my home desk, changed a lot of bills to auto-pay, and updated a lot of financial info so Dana would understand it.

So, I get to retire again, and have a more carefully planned visit to Stanford. Needless to say, Dana is a pillar of strength and composure. We had our cry and now must move on. The blog gets reactivated and the hair goes away again. The prognosis is that I go through the process again and Iʼll be fine. Iʼll let you know more as I learn more.

Dana and Mike are running to save lives!

There may be life in the old blog yet!

Check this out!

Dear Friends and Family,

The last time I sent out a group letter to friends and family, husband John was in the middle of his battle with leukemia, and I was trying to put together a book of memories for his 50th birthday. We were afraid he would be spending that birthday fighting for his life in the Cancer Ward at Stanford Hospital. Well, that was then, and this is now. Happily, John was able to celebrate his birthday at home that year, and has celebrated a couple since then. We will be forever grateful for the loving support we received during that difficult time. I’d like to appeal to you now for another kind of support, one that will certainly save the lives of many others.

The Leukemia & Lymphoma Society funded the research that was directly responsible for John’s treatment and recovery. We now have a special opportunity to do some fundraising for this wonderful cause very close to our hearts. My son, Mike, and I are participating in the Nike Half Marathon in San Francisco this October! We are part of a larger team made up of parent/student pairs from San Luis Obispo High School. Last year’s central coast team raised enough money to fully fund a research grant, $350,000!

Mike and I have set our fundraising goal at $6,000. We hope to hit our first goal of $3,000 by the end of June. We can only accomplish our goal with your help. Please give generously. Your donation will go directly to the mission: Curing leukemia, lymphoma, Hodgkin’s disease, and myeloma, and improving the lives of patients and their families.

Of course we are participating to honor John, but also in loving memory of my mom, Marci Ward. Mike never had the pleasure of knowing his grandma, who succumbed to cancer much too soon. I know she would have been proud of him! You probably know others in your circle of family and friends who have been touched by these devastating diseases. We would like to honor your loved ones by adding their names to our race jerseys, and participating in their honor as well, so please provide their names for us.

The fastest and easiest way to donate is through our web pages. You can make donations online and check our progress at

http://pages.teamintraining.org/los/nikesf08/dfiore (Dana’s webpage) or http://pages.teamintraining.org/los/nikesf08/mfiore (Mike’s webpage)

When you get to the website, scroll down a bit if you don’t see our personal message.

Of course your donation is tax deductible (tax ID number 13-5644916) but more importantly, your donation will help save lives!

Thank you so much! We greatly appreciate your generosity.
Love,
Dana and Mike Fiore


P.S. I would appreciate it if you would forward this email to as many people as you can to encourage them to donate as well. Thanks again.

Epiblog, Have a nice day!

First off, good luck to Nick, hope those tests come back saying you have mono or a bad cold. We will all think good thoughts for you.

My health is fine cancer-wise, just the same old annoyances I mentioned last blog. I had doctor week this week to check on some parts that need rotation or replacement or flushing or realignment. The skin doc took out the freeze gun and blasted a bunch of AKs and SKs (non-cancer growths, keratomas) off my legs. One of these was super itchy, and I was glad to see the sucker burn; I prefer pain to itch. He blasted some more on my head, and then these recurring warts on my hand. One of those blistered up and looked like a giant pink gemstone ring on my pinkie, very Godfatherly.

Next I saw the throat doc, then the GI doc. I definitely have acid reflux, gotta go to 2x/day Nexium. Funny, the doc asks, does ERD wake you at night; it wakes many that have it at 3 am, peak acid production time? I say no, but damned if I didn't wake this morning at 2:47 with a lump in my throat. The power of suggestion, or the chocolate I ate last night, and the ice cream, just like the doc told me not to do. Man, cutting back on some food favorites and coffee is going to be tough. So, here I am, feeling chipper, closing out this blog, making one last entry. I said to my wife the other day, 'I don't feel like I am having very many good days these days, I'm just caught in a rut of doing the same things.' I made a vow to myself when I was in the hospital that I would only have good days, but it is obvious now that that is impossible.

This all started when I asked myself when the last time was that I woke up and felt good and had a day I enjoyed, a good day. Tough question. First off, what is a good day? I realized I didn't know, or at least had never stated my criteria, what scale I would use to judge the days. And what if these are the good days, and you can only measure them in the end, when you've seen all your days? I suppose that would be more of a better/worse days judgment, and I don't know if you can just add days to each side without rating each day. So I am considering the power factor of certain good days, really really good days, wicked good days. Super bad days too, I suppose. Can one extra good day offset a week of sorta bad days? That's what vacations are all about, in part. I see my neighbor's driveway empty many weekends and I say to the wife, 'They're having more fun than we are.' So I go along, piling up these sorta bad days, and trying to offset them with a few really good days now and then to get balanced. It doesn't seem to be working. So what makes a good day? I asked a lady at work that is very introspective, and she couldn't answer right away; she will think about it this weekend and get back to me. Dana is pondering it, and I am too. Here is what I am coming up with.

I would want to wake up and feel well, maybe not healthy but with no new aches or pains. I would accept the pains that I already have and am dealing with - the hips, the elbows, the ERD, the skin itch and growths.

There would have to be love and connectivity with the family. Maybe a snuggle to start the good day, warm in bed, woman all soft and smelling sweet. Some interplay with Mike that was positive, a good hug, smell his head like he was still a baby.

I would do some physical activity that made me feel good about myself. I almost always feel good after surfing, even if I suck, but I feel bad after golfing if I suck. I often golf with people I don't really like golfing with, swing talkers and the like, but surfing is a solo sport, just paddle down the line if someone is bugging you, and I haven't had to do that for a long time. That probably means I haven't been surfing enough. Does this mean I should quit golf? I love golf. It means I should only play with people I enjoy playing with.

Each day I would have to invest time in future good days by eating right and exercising. I love the ice cream and chocolate, but will pay later in acid reflux and general ill feeling. Same if I overeat, which luckily I don't do often. I could solve some of my pain issues, and golf and surfing issues, even work issues, if I were stronger, more flexible and had more endurance. I have to upgrade my diet to get the energy to have good days, so I would eat a lot of veggies, and drink a lot of water.

Whatever I did that day, work or home, I would have to do well to have a good day. I like tangible results myself, and in my job I don't often get them for weeks or months. That is why I am drawn to golf - tangible results and quickly. I would not let bad situations infiltrate my good day. For a really good day, I wouldn't have to deal with any bad situations, client or vendor disputes in my work. I would have a victory of some sort, finish some difficult task, solve some sticky problem, create something useful or beautiful. The act of creating something is very satisfying.

The people around me would be having a good day too, so there would be no bad days of theirs spilling into my good day. At work, shared victories. At home, shared wonders, love, affection. I would help my kids in some way to prepare to cope with this world, to have many good days and few bad ones.

Feeling like you are part of a community should be a factor in here, but I don't feel that in my gut very strongly. I feel at odds with the community often, with the way our govt. is (not) handling things, with the opinions of my neighbors in the newspaper. There is a feeling of continuity that comes from community, that everything will be as good or better for your kids, that you left the world a better place, and I am not getting that these days. I worry about the future for our kids, and that does not help towards a good day. One way to move this toward the good day side would be to work towards bettering something that needs fixing. Maybe that means volunteering, or writing, or blogging, somehow pushing earth towards a good day.

It's almost 6 am Saturday morning. I read the newspaper, and now I'll get ready for my typical Saturday am routine. Drive to the Rock in Morro Bay, check the surf (surf's up), maybe cowboy up and jump in the cold water. If not, go to the golf course and practice for a couple of hours. I always enjoy that, because it has no pressure. Get home around noon. This weekend I will go into work for a few hours, catch up on some reporting I need to do. Watch the Red Sox in the World Series at 5. Sorry honey. Let's Go Red Sox. I have been chanting that at work randomly, let them know where my allegiances are.

As I've said before, it has been very therapeutic for me to write this blog, but leukemia is not really part of my day-to-day life anymore. It lingers in the background, this veiled threat. Maybe something bad will happen, maybe not. All I can work on are the odds. All my friends and family have made me feel part of a community that matters, my karass. As Bokonon said in Vonnegut's 'Cat's Cradle', and I may be repeating myself here but bear with me:

"We do, doodley do, doodley do, doodley do,
What we must, muddily must, muddily must, muddily must;
Muddily do, muddily do, muddily do, muddily do,
Until we bust, bodily bust, bodily bust, bodily bust."

Of course Bokonon also said
"What can a thoughtful man hope for mankind on Earth, given the experience of the past million years? Nothing."

But then there is this:
"Tiger got to hunt, bird got to fly;
Man got to sit and wonder, 'Why, why, why?'
Tiger got to sleep, bird got to land;
Man got to tell himself he understand."

We are what we are. Thanks for letting me be part of your community, and for all the support. Have a good day.