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.

Scratching out a living

Just when you think you are out of the woods, it turns out they were full of poison oak! In the last month, as my immune system recovers from 2+ years of suppression, it decides to go on a rampage of a sort, and I am one giant itch as the WBCs go rampaging from spot to spot. One big constant allergic reaction to nothing! This seems to be related to circulation, as heat really gets it going. I step out of a hot shower with rashes everywhere, so now I am taking cold showers. Benadryl is keeping the whole thing under control, keeping it bearable, and the doc thinks it will subside in some time, but so does breathing. The only other person I know that went through this treatment is still having the itchies, and she ended chemo months ahead of me, so I have that to look forward to. It could be a long hot itchy summer.

The other night my scrotum was on fire with the itch, and I was wondering if I had mentally blocked some wild party with hookers in Reno, but it was just the crazy WBCs going after a hot spot. I actually considered cutting off the whole mess, but then my head was itchy too, and my ears, and my chest, so I can't chop off everything that is itching. I had to bust out a firehose of 2.5% hydrocortisone cream and put it out; back to the damn steroids!

Just to make things well-rounded, the acid reflux thing is back and I have to cut back on my favorite drug, coffee. Jeez. So, the new drugs are Benadryl and Protonix, and Gaviscon when things are really kicking. Right now I feel like something is trying to break out of my rib cage. Things seem to get going about 2 hours after a meal, and I am right on cue. But, my golf game is coming around, and when I am outside the itch is gone, probably because of the cool weather we are having around here. Mac, I played Dayton Valley CC (Nicklaus design) with the boss last week, shot an 84 from the blues. 40 acres of water on the course, and at least 100 sand traps, so I was pretty damn pleased.

Young John is home from school, so the house is a little different. He is running with a game idea I had a few years ago, so I am going to have to help him with it, and maybe we can both avoid real jobs if it works. Stay tuned.

Everything else is pretty normal. School is coming to a close for Mike and Dana, and we need to get some vacation time planned, I've worked over a year with 3 days off. I will probably keep posting until the itch dies so my readers with leukemia that read this can see how it might fare for them. The key to scratching out a living is living, not the scratching.

Boring is sometimes good

My bone marrow biopsy was clean, I am a clean machine (in that sense). Didja get my pun about boring? I wonder how old you are when the bad puns gene turns on?

Let's get our goodwill thoughts to anonymous Bill, send him some white cells through the ether or however you all did it last time.

For some reason the blog just got 5 times the hits it's been getting, maybe the new blogger setup drew some looky-loos. Let's hope the incidence of leukemia didn't just jump. Maybe my friends are looking for some final words of wisdom from me. It's 7:30 Monday am and I am on my way to work, so I don't have my head in the game. I will post this and follow up with a final blog of wisdom. Here are the only thoughts of wisdom I have right now. Stay balanced. Slow it down if it's going bad. When it's fast, read more break into your roll. Keep your head steady. Do all this and you too can shoot 88.

Work to live, and enjoy every day you get.

Putting my chemistry set away

I just took my last dose of mecaptopurine (I hope). No more prednisone, no more vincristine, no more methotrexate. I have taken 21,600 mg of mercaptopurine, 9000 mg of prednisone, 2835 mg of methotrexate and 180 mg of vincristine in the last 18 months. I feel good. No worse than Halloween at URI, and only mildly stranger. I won't get that bone marrow biopsy until April, give the cruel flowers time to bloom if they are there growing in me, which they aren't. Fer cryin' out loud, nothing lives through this shit, I haven't had a cold or the flu while people drop like flies all around me, knock on wood. I have never seen flies drop, hmmmm.

Anyway, I am trying to throw a golf game back together, an old man game that doesn't go for power. It's been about a year since I gave it up. I've been hitting the shag bag and the putting green. Hit the driving range yesterday to get some tips from Jack Leary, and now my hip and back are hurting. Surfed yesterday, really badly, first time in 5 months or so, then hit the driving range, so maybe that was too much. Or, I can't ratchet down to the old man swing and overdid it. Golf is a strange game in that you can quit for a while and lose some bad habits, so when you restart it seems easier. Of course those old habits will sneak back and the nasty cycle begins again. The price of freedom is eternal vigilance. A new hip is cheaper; I see they have this new way to recoat hip joints with titanium, gotta check into that.

Looks like I made it through leukemia, and it isn't going to kill me, at least not just yet and hopefully never. It certainly has made me change my basic outlook of the future, but I haven't taken the big step of changing my life to reflect that. My guess is that most of us will die leaving behind grandiose schemes, plans, ideas, unrequited loves, regrets, novels in our heads, gifts never given, travels never travelled, words unspoken. Reminds me of a section from the book of Bokonon from Vonnegut's Cat's Cradle:
Tiger gotta hunt. Bird gotta fly.
Man gotta sit and wonder why, why, why.
Tiger gotta sleep. Bird gotta land.
Man gotta tell himself he understand.
I think that's where it's from. I keep talking to myself but I still don't understand.

I will post one more time, after the April tests, and then it will be time to put this blog to rest, we hope for good.

dX plus 2

2/8/07, Two years after diagnosis day
In theory this was the day I would be done with chemo. It is 3am, and I am up and about since 2 at least partly due to 100 mg of prednisone. Health is good, but the doc wants me to go one more month, just for extra kicks. So this is my last steroid week, a little more mercaptopurine and some methotrexate, a bone marrow biopsy just for a final check in early March, and we're done!

I noticed about 4 weeks ago that I was always freezing even though it was 70 in the office and at home, and then I started gaining weight, so we tested out my thyroid. The dang thing was normal, and my doc says I am just finally wearing out from the chemo, and I will probably sag a little more when we end it, but then by April I will recover. Reminds me of The Wasteland by TS Eliot, which I will only include parts of because it is long:

APRIL is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.
..........
What are the roots that clutch, what branches grow
Out of this stony rubbish? Son of man,
You cannot say, or guess, for you know only
A heap of broken images, where the sun beats,
And the dead tree gives no shelter, the cricket no relief,
And the dry stone no sound of water. Only
There is shadow under this red rock,
(Come in under the shadow of this red rock),
And I will show you something different from either
Your shadow at morning striding behind you
Or your shadow at evening rising to meet you;
I will show you fear in a handful of dust.

A moment of silence for Chiaki, who I worked with at Symantec, who sadly passed away last week from stomach cancer, leaving her husband and teenage daughter. Turns out she was born 2 days after me, and I was thinking how that bullet was meant for me, but I ducked and she caught it full brunt. A stupid thought. More like she hit the other side of our medical care, she had a doctor who dismissed her symptoms for something like a year, and when she switched docs it was too late. She suffered the chemo bravely even with the full brunt of side effects that I never got, and with the knowledge that she was only delaying the inevitable well beyond what they she could endure. She seemed a happy and very peaceful person that I would have liked to know better, and her passing brings me sorrow. I wish her luck and bon voyage in her travels through the universe.

Everything else is good, chugging through life. My neighbors are having more fun than us, but our house looks nicer. I think that means they are winning if we're keeping score. It is time to ratchet back the work efforts (at home) and enjoy life more. Dana and I get caught up in a battle of who does more, and then we start keeping score, and then we're caught in the death spiral. I am out of gas and can't tread water in the whirlpool for long, so I am opting out of this spiral this time. Let's take up dancing and go for a canoe ride, maybe have a BBQ.

Hey, maybe it is time for the final phase BBQ! Hmmmm, I have eyebrows, and now I have a bigger gut, maybe a big gut BBQ. Mac, I bet you got some spare big guts in Alabammy, no?