Chilling out

It’s been a week since I updated the blog, so I thought I should, although there is not much to tell. This must be the long, boring part of the leukemia battle, no exciting steroid stories, no hospital craziness, just regular meals and mild physical insurrection. I can tell this is getting mundane because my family is starting to treat me like I am fine, which I am most of the time, as long as there are no stairs or hills involved.

Phase II of chemo is no problem so far. Two weeks of mercaptopurine means anti-nausea drugs, then 2 weeks of asparaginase means chills and fevers every fourth day, and the vincristine is numbing my fingers and now toes. We started the third week on Tuesday, so asparaginase and vincristine right now. The dropsy effect from the numbing is getting worse, meaning I can’t do the dishes, dang, and typoing is a pain, and I meant to say typoing. After 4 weeks, repeat and rinse! Every one of these drugs causes hair loss, nausea, fevers, headaches, etc., and I continue to have only mild problems, a little nauseous feeling but controlled by drugs, low fevers and chills controlled by Tylenol, and hair loss but who can tell? Speaking of which, I have been looking for some used wigs or toupees, anyone have anything that would look really bad?

Me with Mike’s hair



Me with Jack’s hair (Mike’s friend)



Me with niece Jenny’s hair, from a few years back. Jenny Rose is standing behind me, with her hair flipped over my head. Rock On!



I have been talking to the doc about the rest of treatment, and it looks like I won’t have to go back to Stanford for anything anticipated. The five spinal taps/methotrexate injections can be done here by a neurologist pal of the docs, they trade spinal taps for chemo shots I guess. He thinks we can get rid of the PICC line pretty soon, which will be awesome; it means I can get on some physical activity and maybe even surf if the blood counts are high enough.

One night a few years back I was sitting in my kitchen reading a book when I heard this scratching noise, not very loud. I listened carefully and eventually traced it to a light fixture over the dining room table. It was very faint and not consistent, just an occasional scritch scritch. I decided to explore further in the morning. In the morning I removed the plate that covers the light fixture wires and box, and inside was this – a Potato Bug. The crazy thing was, how could this bug have ever gotten in there? They are pretty big, at least as big as a quarter, and the biggest hole into the light fixture was less than dime-sized. Sucker must have been in there since birth? This insect scares the wits out of people, but it does nothing.


The Potato Bug (Stenopelmatus intermedius), is not the same as the Colorado potato beetle, Leptinotarsa undecimpunctata. The native Americans called it Woh-tzi-Neh or old bald-headed man, and maybe that is why I have an affinity for this creature. See http://www.potatobugs.com/.

Hence, today’s Eyebrow Lowbrow

New chemo - lardassathol

Monday - It’s been a pretty boring last few days, thankfully. I just came from the dermatologist; you’d think all the chemo would kill any kind of cancer anywhere, but they removed some suspicious looking things from my back and face. No jokes. I went for a hike along the beach north of Cayucos earlier today, and had enough energy to go about 3 miles round trip, I’d guess, with some small uphills thrown in. I am not a big bundle of energy lately, though. I basically sat and watched basketball and napped all weekend, with a movie or some TV golf thrown in here and there for variety.

This will be the big challenge; not falling into a pattern of lethargy that lasts after the leukemia is beaten down. I am sure a lot of this energy level is caused by the chemo, but some of it is laziness, using the excuse of the chemo to just sit on my ass. I better have a talk with myself, straighten me out.

I started back in on editing the old videotapes into DVDs. I have made it past all the old VHS and 8mm, and now I am starting the newer stuff on digital tape. Time consuming stuff, but there are some real nuggets in there. I am making one copy of everything that is on the tape, and then I will make some more interesting and more edited versions. One idea is to make some actual skits where 15 year old John is talking to 8 year old John and 12 year old Mike. That could take some time.

Mac was kind enough to send me this picture of the deer stand they’re going to use down Alabamy way; this sucker comes complete with smoker, Ho-Spice stove, bar, shower and toilet, and has 8-track of all your C&W stars.



Just for comparison, here is the tree stand we use here in CA, totally handicapped accessible. This sucker can go from 0-60 in 7.8 seconds, tops out at 75 mph, gets 18 mpg and can track a deer for miles. This baby comes with a 100-CD changer, DVD, refrigerator, bar, heated seats and bulletproof windows.


I took some pics of the cards, letters and photos famous celebrities have been sending me. Dana sent out piles of cards to various people, to see who would respond, and these are some of the responses. The Michael Jordan stuff came yesterday, and he threw in a nice t-shirt. Vanna and I are going out to breakfast this weekend, when she will be in the neighborhood. Man, she really hardens my consonants and turns my vowels!








Wednesday - I went over my chemo routine with the Oncology nurse at the Doctor’s yesterday, with an eye for which chemo treatments are requiring a PICC line. It turns out, at least in her opinion, that all other treatments can go regular IV. I need to ask the doctor on next Tuesday if we can remove the PICC line. I think the tradeoff of some IV pain for the mobility of my left arm will be well worth it. I would be able to golf, maybe even surf the small stuff if the blood counts were all high. The fact is I feel better now than in January, except for the lethargy from chemo, and that can be ignored with some extra caffeine. I certainly would have less excuse to turn into the giant lardass I am becoming.

Let’s see, what did we think would happen when you quit smoking and lose that nicotine metabolism boost, eat twice as much as normal while locked in an isolation ward, restrict motion with a PICC line, dump lethargarinase and lardassathol into the system, and then have your friends bring you meals for twelve people, including three desserts, a couple of times a week? No pictures, but this is getting ugly.

Mac, don't shoot me, those deer on my forehead are just pictures!

After all that excitement

Phase II
As I emailed you all, the results of the bone marrow biopsy and lumbar puncture show no leukemic cells; I am in remission and starting phase II. This is all very good news. I think the docs don’t really need the bone marrow biopsy and LP except to confirm what they already know but can’t legally say, and that is why it is not foremost in their mind to GET ME THE DANG RESULTS! I let them know the patient’s perspective.

Speaking of perspective, last Thursday at Stanford when the new resident doctor came in to give me the preliminary inspection, he started out by asking all these questions. Now, I just had the bone marrow test and the lumbar puncture to see if I am in remission or am I going to go back to induction and need bone marrow transplants. He asks a couple questions, and then he starts asking about my siblings. How old are they, where do they live, do they have any cancers? Dana and I trade glances, thinking Oh Shit, I am not in remission and they are setting up for bone marrow transplant. It turns out he was filling in blanks on the patient information sheet. Scared the heck out of me.

We started phase II yesterday, Tuesday, and it was quite a cocktail party. I had an IV of cyclophosphamide, a subcutaneous shot of cytarabine in the stomach, some steroids and anti-nauseas to counter the side effects, and some 6-mercaptopurine (6MP) in a pill when I got home. They gave me these handouts showing all the side effects of each. A couple said I had to drink 2 to 3 quarts of fluid to flush the bladder, but another said one of the side effects was an inability to urinate. I asked the nurses if anyone had ever exploded from this combination, but they ignored me. Just about every drug in phase II causes hair loss, low blood counts and nausea. I took some spare anti-nausea pills home, but I had no ill reactions. Until today.

Doc, did you say Bulimia or Leukemia?
I guess it was bound to happen sooner or later; you just can’t pound the human body with that many chemicals for that long and not get a reaction. The drugs they are giving me all target fast growing cells, because cancer cells are cells that cannot stop dividing hence they grow fast. The other fast growing cells that get hammered in this process are hair, mucous membranes and nails. My hair is trying to grow back, my nails are like rocks, and my mucous membranes have been fine until today. I went in for a shot of cytarabine this morning, in the stomach again, and took my 6MP pill when I got home at 9:30, along with docuset, protonix and augmentin for the ear infection. Most of these chemo drugs cause a nadir (low point) in 7-10 days, so I am still having effects from the last round.

All morning I was having problems with diaphragm spasms, not really hiccups or belches, but some variant. Given the chemistry set that got dumped in me I wasn’t surprised. Around 1:00 I heated up a bowl of soup, made some toast, then went in the bathroom and puked about 5 times. I just couldn’t talk myself into the "nausea is really hunger" thing that had worked in the past. The puking ended the whole gas problem I was having, and I really felt better.

After resolving Mike’s crisis of dress rehearsal pants, and let me digress here by asking if it doesn’t seem reasonable to expect a kid to do something all by himself after you have prompted him 7,567 times? You tell a kid to brush his teeth every morning and night for 11 years; you would expect it to sink in. That’s over 8,000 times, and yet try skipping telling him for a night. Anyway, in spite of asking 2,378 times if you’re all ready for school the night before, Mike forgot his dress rehearsal pants. After I drove him his pants, I ate my soup and toast, and I felt fine.

I am having a pretty low-key week, Phase II is starting with a slam, because of the lack of daily steroids I think. I am still gaining weight, up to 176, thanks to all the food the Sinsheimer School (Dana’s school) staff keeps sending over, and no energy for walking. I have to get a grip on the income/outflow side of the energy equation; maybe bulimia is the answer. This phase goes on for 8 weeks. It seems like Phase I was a mental battle, like the first round of a fight, where you size up the opponent, find his weakness and strength and formulate a game plan. It starts to become apparent in Phase II that this is one of those 42 round bare knuckles fights they used to have. Stamina is going to count for a lot.

Gypsy Moths
In the early ‘80’s in RI and New England, we had the attack of the gypsy moths. These moths increase their population for 7 years to huge levels, then they decrease for 4 years. They are so thick in the woods that their feces falling to the leaf litter sounds like falling rain, and cars skid on the caterpillar corpse juice all over certain roads. They make for great eyebrows, though.

To Err, Divine

Writing this on Fri night
I dropped young John at the Salinas bus station at 4:45 this aft, watched him get on the bus to Santa Cruz, where he was to meet his friend Kane. Just got a call from Kane, at 9:30 pm, John was not at the bus station. The plan B scenario I played out for John when he told me he did not have Kane’s phone or address is playing out. He is in downtown Santa Cruz wondering how to find one person with little information. So we called the Santa Cruz police, who are now looking for John.

John told me at 11:00 this morning he wanted to visit his friends in Santa Cruz, and Dana and I had already agreed it was a good idea, since John is thinking of going there for university. John told me the bus was at 2:30, so we went to the bus station in SLO at 2:20 and the station agent said that bus was in the morning, the afternoon bus was at 1:00. John asked me to drive him to Santa Cruz, and I said let’s go home and see what other options there are, Mike has a game at 7:00 that I want to go to. We pulled up the bus schedule and see that the bus goes from Salinas to Santa Cruz, leaving in exactly 2 hours. We pull up the map to the Salinas Greyhound, and run out the door, 2 hours to go 128 miles, real tight but all highway.

On the way I find out John has no phone numbers for his friends, and no plan B, so we call info and get his friend’s Dad’s number, and he writes down my cell phone number. He has $200 ($50 for bus, $100 for food, $50 for a present or whatever), and $100 of that is in his socks and shoes, where I told him to put it. We make the Salinas bus station with 5 minutes to spare, and I watch him get on the bus. And now I have just finished filing the missing person’s report with the Santa Cruz police. The thing is, why hasn’t John called? His friend has gone by the bus station again, and the police have also, and he is not to be found. One of us is getting in the car and heading to Santa Cruz soon. For the next 3 hours, until 1 in the morning, Dana and I call Kane, the police, bus terminals, Greyhound, and anybody we think may have a clue to John's state of mind. Dana looks increasingly frantic, and I feel increasingly tired. I was falling asleep at 9:00. Why hasn't he called?

Writing this on Sat. night
I am back from Santa Cruz, John is found, and it is unbelievable what kids can do to you. I woke up at 4:00 am, grabbed some pictures of John, supplies, one of his smelly shirts for the bloodhounds and hit the road. I start playing through the scenarios, and they’re not good. Most involve rohypnol, the date rape drug. I decide to forget all the bad scenarios, because there is nothing I can do about those, they are done. I focus on placing him in one city. I am also thinking about some of my earlier posts, about family tragedy, and thinking Well Shit, my leukemia is supposed to be the family tragedy, didn't I post that?. Did I curse this upon us by trying to get out lucky on the leukemia? What will happen to us if something awful is happening here? I will become some insane man, seeking revenge and dying inside. Dana will shrivel away in lunacy, and Mike and Woody will seek solace in a never-satisfying world of hot California chicks and drugs. The scenario I like is the Something You Have Never Considered is Possible but Exists in John’s World. Why hasn’t he called, though?

I arrived in Salinas at 6:35 am, and talked the ticket agent into giving me the bus drivers name, but struck out on getting a phone number for the driver, different company, independent, whatever. I call an 800# and they say have the police call, we'll get them in touch with the driver. I call Dana and give her this info; she is at wit’s end; I am holding it together through action. When the police do call, later, they say call the bus terminal, they will help. The damn bus terminal is closed.

I head for Monterey. I keep playing out scenarios in my head, and they are not good. John is pretty big and built out of steel cable, unbelievable for a kid who sits all day. He does work out though, and somebody would be in for a big fight. They had to drug him. There are a bunch where he is dead, dying, being gang-molested before being killed, or eaten. The good ones he is getting drunk or stoned with other kids, or having wild sex with random chicks. Did he get off in Monterey, and is too embarrassed to call? Watsonville? Did he sleep through the Santa Cruz stop? Is he in the madhouse of Greyhound San Francisco? We tried to call the San Francisco Greyhound terminal last night, but it was busy. Dana calls Greyhound and at some point they assure us they check tickets at each stop so he could not go beyond Santa Cruz if his ticket only went to Santa Cruz. Why hasn’t he called us?

The Monterey terminal is a little gas station/mini mart. The man working there is the owner, I think, and he was working yesterday at 5:30, and no, he doesn’t remember the kid in the picture. I ask if the bus stops for long, and he says five minutes. I think, John would figure out this is not Santa Cruz in about one minute. He would come in and buy a candy bar, look around, and think, This is not Santa Cruz. I head for Santa Cruz, because Watsonville is not a real bus terminal either.

I get to Santa Cruz and head for the bus terminal. I get there and ask the station agent if he has seen John. He says no, and he wasn’t working last night, but he tells me the driver is working today and will be here at 11:00. I ask if anyone has bought a ticket to Charlotte, Virginia, and he says no, and that would cost more than $200. Dana found Charlotte in John’s internet history in Greyhound.com. I do a circuit of the terminal, asking everybody if they have seen this kid, and there are some pretty entrenched homeless guys who I figure would have noticed some kid hanging around for hours last night, if he had been here. I am just about to go find internet cafes when I see 2 skaters coming down the street, and I wait for them. I show them the pic, and they say No we haven’t seen him, but don’t worry, he is just partying. I say No, not without his friends who live here. John is not a partier, so that’s not it. They say, Oh, he is probably having wild sex, and I say I like the scenarios they are coming up with better than the ones that are left, and just then my cell phone rings.

I got this new cell phone for my birthday, camera phone, took pictures of my bone marrow biopsy with it. We told John to take my old phone, but he said No, he didn’t want it, won’t use it and we can’t make him. This phone rings, and it is Officer Coleman with the Los Gatos office of the CHP, and he has my kid. Hallelujah, where can I meet you? He gives me directions to the Los Gatos PD where he will drop John. He tells me he found him walking on the side of Route 17. I ask how far Los Gatos is, and he says about 20 miles. The officer puts John on the phone, and I ask him if he is all right, and he says he is, just tired from walking all night. The two skater kids ask if I have a buck for coffee; I give them $5 and tell them to call their moms.

I drive out route 17 to Los Gatos. Most people don’t try driving on route 17, let alone walking it. There is nowhere to walk on most of the road. Route 17 is the horrow show windy hilly road that runs between San Jose and Santa Cruz, a lot of people's daily commute, very busy and a nasty road. I get to the Los Gatos PD, park, and out walks John. The whole thing about filing the missing person’s report was that I would have to sign him out, meaning in person, when they found him. Now he just walks out. Fine. I give him a big hug, and tell him I have never been so happy to see him, now I have to kill him. I ask him, ‘Why didn’t you call?” Now sit down, this is tough, because he is a smart kid. Remember I said I like the scenario of Something You Have Never Considered is Possible but Exists in John’s World?

He says, “I didn’t think you could make a collect call from a pay phone.”

I say “*&)((*^&%EE^%^*%@$&$* WHAT? I never did lessons on making collect calls?” He tells me he fell asleep and got off the bus right away when he realized he was past Santa Cruz. First thing he did was ask a cab how much it would cost to go to Santa Cruz, and the cabbie said $60. John thought it was too much and walked away. Big mistake #2 (sleeping through stop, #1). He went looking for an internet café in Los Gatos, and walked for miles, and never found one. He was going to email us and instant message his friends. He ran into two computer-looking guys, and thought to ask them if he could use their internet. Not their phone, their email!!!!!

I have him call his Mom, and he talks to her a while, and she gets the story but I only catch dribs and drabs. We are driving to UC Santa Cruz to hook up with his friend, who has been up half the night looking for him. I have a tough choice, because his Mom wants him home, the bus tomorrow back to SLO is at 9:00 am. He wants to stay, he is here, he now has a cell phone and all the numbers, and I may go off on him if he is in the car with me for 3 hours. We find his friend, and I ask him if he wants to hang out and leave in a few hours, or will he catch the bus tomorrow? He says bus, and of course I ask what happens when you miss it, and he says he'll catch Monday’s bus, and I tell him to CALL US WITH THE PLAN!

I am reading this book called Deep Survival, which is about how some humans screw up and find themselves dead, while others just walk away from circumstances that should kill them. One of the recurring themes for those that get dead is, they compound their errors. They get lost, and they start looking for a reference point and get more lost, eventually they tire and now they have no shelter and no water, and they get dead. I tell John, when you find you have made a big mistake, PAY THE MAN. You are going to have to pay up, do not make big mistake #2. He should have negotiated with the cabbie, but taken the cab; he had the money.

One good thing that comes of this is I drive downtown Santa Cruz, and it is shop-o-rama. I am not metro, but tomorrow is Dana’s birthday, so I park. Right in front of me are three 40-something females, so I ask where they would shop, and they point out some places. Within thirty minutes I have some okay gifts and one perfect gift, a slice of pizza and a mocha java for the road. Dana is asleep when I get home. I need to get the full story of his night of adventure when he gets back.


Thursday’s Big Scary Day
They are going to look at the bone marrow to see if there are any more leukemic cells in there, to see if I am in remission. This is something they will do on a regular basis. I may try to get them to let the Dr. here that did the first one do it. This guy was literally on all fours on my back; it looked like he was using the force needed to unscrew a tire for a car. It didn't hurt but the tiniest amount. The guy was magic. Yesterday 90 pounds of Dr. Kim lady puts some lidocaine in the area and some of it gets onto my sciatic nerve, and this lightning bolt of pain shoots down the nerve to about mid gluteus maximus. Very strange reaction, but it is numb in about 2 seconds.

Dr. Kim has explained in response to our questions that we won’t see the results of these tests until Monday at earliest. I feel stupid, with my bags packed and my hopes up in the air.

She misses the biopsy spot first time, Yow! Second time she lost the core sample on the way out, so this little sliver of bone marrow is floating around in my back somewhere, no problem except Yowza, and then third time's a charm, except Hooooah! See the photo.


Next I check into the Infusion Treatment Area (ITA again). They will give me the spinal tap and chemo in one process. Dr. Kim has me bend over the table and plunges the spinal tap (now called lumbar puncture) needle in and looks for the fluid sac between lumbar, and she keeps coming up with dry holes. Like drilling a well. The pain is so deep when she hits certain spots you have to growl and groan combined, like hnhoooooooaaaaaaaaooooo gggrrrnnnnhrhrhhrhhh. But it's quick, and that's what you want out of pain. She asks me if I am arthritic, because she can't find my fluid sac, and I tell her no, keep pushing, get her done Doc, Go, Go, Go. She gets it finally, and she is pretty sure she has everything they need for a good diagnosis.



I get the new drug in the treatment, preservative-free methotrexate, nice and fresh from upstairs where they were still making it when I checked in at ITA. They inject that right into the spinal area to replace the fluid they have taken out. I get some saline solution in an IV and have to lie flat for an hour to avoid springing any leaks.

A new resident comes in and inspects me, and he finds that I do have an ear infection. The chief Dr. comes in and asks how I am doing, and I answer fine, thinking in relation to other patients. Dana chimes in and says “He is not doing fine, he is doing terrible, he is tired all the time, falling asleep, wakes up in the night and can't go back to sleep, he is grouchy and emotional, his legs are cramping, his fingers are numb, his back hurts, he has bloating and gas, he’s a wreck.” Thanks honey, I thought I was ok. The chief Dr. says “Those are all normal symptoms and reactions, and a lot of that is from the steroid Prednisone, he has been off that a week and it will dissipate.”


He talks about cutting back on the vinscristine to avoid more numbness, and tells me the blood work is all looking good. He explains that red blood cells take longer to make, and so they are impacted by the chemo treatments more than the white cells and the platelets, whose numbers are back up. He says he expects good results on Monday. We drive home.


Today’s Eyebrow Lowbrow: In honor of MJ and Jay

BSD = Big Stupid Dummy

This is Dana updating for John who is flat on his back after having had a painful bone marrow biopsy and spinal tap with chemo. He is dictating the following:

BSD = Big Stupid Dummy because it turns out we won't get the biopsy results until Monday at the earliest.

There was no reason to pack for another potential hospital stay after all. We should have called to clarify.

Chief Doc M. says the blood work looks great and all the side effects are normal and to be expected. He seemed confident that things were going well.

John will give you a more detailed (and surely more amusing) accounting of things tomorrow. TTFN--Spudhead

Big Scary Day Eve

Trash at Cruz de Pinto


I woke up at 3:30 this morning with my legs just starting to cramp, especially my calf in my left leg. That was enough to keep me tossing and turning until I surrendered at about 4:30. I can really feel the lack of RBCs, of hemoglobin. I get two units of blood today at 11:00. While I am there I have to get the test results from when I first went into the hospital on 2/9 and see if my blood counts were lower than they are now. I am guessing I was in worse shape then, because I was cramping all the time and my ears were pounding with my pulse, and I only have those symptoms slightly now. Curious to see.

Frigiliana from Cruz de Pinto



We had a quiet family Bday dinner last night. We are waiting to celebrate this weekend, after Big Scary Day Thursday. Dana cooked brasciole, my favorite meal, which I only get about every twenty years or so. She cooked it to perfection, and it is not an easy dish, and she needs a new kitchen. Our boys reminded us they are still teenagers after dinner, at clean-up time, until we were kind of annoyed with them.

I read some of the tons of letters that you all sent to Dana with all the illegal and ethically questionable stunts WE pulled in the past; I was never alone, and I have audiotape of a lot of this, Donald, so be careful what you say. Anyway, there are some funny stories buried out there, buried FOR A REASON. Thank God I am not running for office. Young Mike Fiore bet his brother that his letter would make me cry; that kid is rotten, a real politician, knows how to pull all the strings. Reminds me of me. Nick B. and I once made a bet on who could make Heather S. cry. I tried everything, and she finally squeezed out one tear of rage when I asked her, “Did you stop going to the gym?”



Cruz de Pinto
From Frigiliana, the little mountain village where we lived in Spain in ’02-’03, you could see this little monument on this distant hilltop, maybe a mile or two away. I was told this was Cruz de Pinto. The story was that these sailors were lost at sea in a big storm in the Mediterranean off of Malaga somewhere, back in the 18th century. They promised God and the Virgin Mary they would climb the nearest hill and erect a monument to Jesus if they made it to safety. They landed at Nerja and climbed this hill on their knees, and at the top they erected a simple monument. Over the years, people made pilgrimages to the site and have maintained and reconstructed the monument many times. The truly penitent will climb the hill on their knees as penance for some sin. The boys and I hiked to this spot one day, on our feet, and were smitten by the odd conglomeration of artifacts and trash. The site was a garbage heap of old candleholders and junk, but there was religious iconography, statuary positioned in the rock piles, and a small chamber in the monument filled with statues and a burning candle.

These are some of my favorite photos from all Spain.







I tried to talk some of the locals into changing the Cruz de Pinto tradition a little, so that someone would make a pilgrimage taking a plastic bag up the hill and carting some of the empty candleholders off the hill. We should’ve returned and done it ourselves. When I go back to visit after I am all healed, I will climb and clean up Cruz de Pinto, to thank all of you that have been praying for me and to thank God.

I just got back from French Hospital, where I was given 2 units of blood. I got there at 10:30, got the blood flowing at noon, done at 4:00. I read and had lunch during the first unit, and took a nice nap during the second. Now I am trying to figure out if I feel any better. They told me my WBC was at 2.2; I was surprised it was that low. I have to ask the docs at Stanford tomorrow about the yo-yoing numbers. I know some of this is expected from the chemo, but all in all I like my charts to show positive trends. Tomorrow is of course Big Scary Day – bone marrow biopsy and spinal tap, and then the determination that I am in remission or back in the hospital.

Just finished packing for BSD, have to have plan B ready. If I am staying for a bone marrow transplant, I want all my guns to make my stay successful. I pack for a week, and I leave behind a lot of the stuff I brought first time – everything I never used. I probably won’t get an isolation unit this time and I’ll be sharing a room, so I plan to make it a short stay. I have to think this stay is not going to happen at all, and it is kind of annoying to have to plan for it.

We still had a Mardi Gras Ball in SLO this year. The parade was canceled because last year 500 Cal Poly kids rioted 3 miles away from where the parade was held, 5 hours later. So, logically, the problem wasn’t underage drinking (55% of those arrested) but the parade, because the parade inspires a girl to show her breasts for beads. This in turn causes underage alcohol abuse and rioting. Therefore, cancel the parade.

My wife loves Mardi Gras. She and her sisters get together and come up with great costumes for us all to wear, and the men generally have to suffer with little say for the price of not having to work too much on costumes. Grin and bear it, I am a turkey roast, a Wild Thing, a Flame, a Pirate multiple times, and this year, a stylized white tiger.
This is me at Mardi Gras pre-Ball party, on the 15’ long red couch. I look sick.




I knew I was sick at the Ball; I couldn’t dance for more than one minute really, and I was afraid I was going to have a heart attack. So, today’s Eyebrow LowBrow.

Holy Cow I am 50

This is sunset from Frigiliana Spain




First off, it is my birthday, the big 50, so everybody please raise a glass to my Mom, who did all the work, kept pushing for 20+ years! Thanks Mom. I consider today, the big 50, to be intermission, halftime so to speak. Tomorrow we start the second half. Let’s hope the FCC is not around for my halftime show.

Age is a funny thing; you chug along for years feeling a certain age, and then one day you wake up some new age. I remember being 34 for a long time, about 6 years, then one day I felt 38, then about 5 years later I felt 46. I am not sure what age to feel right now, I noticed that today, I was feeling around in my psyche and couldn’t really come up with an age. That must be because my body has lost it’s reference points, the balance is a little off, the head is a little light, the expected remaining time has turned to flashing 12:00, system reset, must’ve been a power outage. I took the mug shots of my body today, and my gut is huge if I push it out, I mean like 8 months pregnant. Impressive. Weighed in at 174, so it’s not all gas. I need some damn blood so I can start walking again.

Dana got me a full massage for my Bday, and I just came back from that. It was great. I was too relaxed; I almost fell asleep. The masseuse couldn’t do deep tissue massage because she was worried about bruising; she had done some reading up on massaging chemo patients. A sign of a good masseuse, I guess. I was very conscious of leaving a lot of hair behind; I had this image of the masseuse looking at her oil-and-hair covered hands and thinking, OK, new job. I asked her to do the through-the-blanket massage, which is really a little more comfortable than the oil-the-hell out of the body hair massage. If they don’t use gobs of oil, they pull the hair, and that wrecks the whole relaxation thing of massage.

The masseuse wanted to know if there were any sore areas she should know about. One of the great things about aging is the loss of vision, so everyone still looks good. Another is the loss of memory, so you can forget where you hurt. As she was massaging about every 5 minutes I would remember another sore spot. Oh yeah, I have sciatica on the left side. Oh, that’s right, I have a neuroma on my left foot. My ribs are pretty sore from the expanded gut. They took a bone marrow biopsy on the hip. My fingers are dead at the tips. And on and on. I for one can’t wait to be the bionic man.

I have long held this theory that the first bionic man would not be some super soldier or athlete, but instead would some really rich guy that wanted to dunk or kick ass at tennis. And it makes sense, too. If you had $10 billion, what would you spend it on if your back was killing you all the time? A new back, that’s what. My money is on Gates for the first person to transplant his brain into some 20 year old body. We can’t be that far off if the going rate for a kidney in Pakistan is $1500. Whole villages are sold out. Sold out of kidneys. In the US we are afraid to annoy God and do stem-cell research, so instead the rest of the world will sell off their bodies piece-meal, to feed their families.

Speaking of the material world, this pic is for Tim; here is my car waiting for Pimp My Ride!




Call 911
There was a funny story from the first day I found out I had leukemia, the day they checked me into Sierra Vista. I was wheeled up from ER and into room 101, just off the main lobby of the hospital. There was an 84 year old guy, Al, in the room already, by the window. He had a section of his colon removed with a tumor two days before, and all he wanted was something to eat or drink, which of course he could not have. It was about 4 in the afternoon. I introduced myself, gave him the lowdown, and offered to have a spitball shooting contest with him to see who controlled the TV, but he was a basketball fan and said he was happy with the game on. We watched the Lakers lose.

Much later, about 9:15 or so, my brother-in-law Bill comes in to visit, after hours, tsk tsk. The Celtics are on. We are chatting away, Bill wants to help somehow, and nurse Julie comes in to talk to Al. We hear her asking who he was calling, and telling him he needs to dial 9 for an outside line. Julie then comes to me and says “Please do me a favor and call me if Al starts to call anyone, he is trying to call the police.” I agree. Bill leaves shortly thereafter, and two minutes after he leaves I hear Al dial the phone, boop boop beep beep. I think, 9 9 1 1. Then I hear him say “This is Al ------. There are 2 men in the room and they are trying to kidnap me. Yes, at Sierra Vista Hospital, room 121. (Wrong room).” I hit the nurse call button, and Julie comes flying in and takes the phone from Al. She explains what is going on to the 911 dispatcher on the other end.

I ask Julie to open the divider between our beds, and I say “Al, remember me, John? The guy with leukemia? I am not trying to kidnap you. I had a friend here and we were talking, I think you dreamt that we were kidnapping you.” He starts to realize what has happened, that he is sedated with Demerol and had this waking dream. We all settle down and he goes back to sleep. The police do call Julie’s supervisor, and she has to come down and check the whole story out. The next day he is mortified that he called the police, but I tell him not to worry, all in good fun.

Flamenco
Who is always looking out for me, yet filled with the passion of the flamenco? Dana, that’s who. When we were in Spain we saw various versions of flamenco, and after we saw La Lupi we all had to try our flamenco poses. I used Dana’s pose for the eyebrows. Today’s Eyebrow Lowbrow.



Here are Dana, Mike and I in our flamenco poses! Muy passionata!

But Tia Lia and Tia Stacy really captured the look!

SLO Doc visit

I go to see my SLO doctor this morning, just to say Here I am. He tells me I look pretty dang healthy. We go over all that has transpired. He does not like the Elspar reaction, and thinks we should look for an alternate. There is more vincristine and elspar coming in round 2, but the other drugs in round 2 are nothing compared to danarubicin and vincristine so I should have no problem sucking it all in. I ask if I will be able to shoot in the 70s at golf, he says sure, and I say Great, I never could before!
Realistically, golf is out until 2006 because of the PICC line and I already know that.

He thinks the sleepiness/fatigue and the gas bomb in my gut are from the Elspar and will dissipate in a few days. He is also surprised that they didn’t show Dana how to flush my PICC line; it’s really a shame because I know how much she was looking forward to doing that. When the doctor and I are done they send me down for some blood tests, just to check my numbers.



This little old lady comes into the blood lab waiting area. She has a walker and her husband has a walker, she is about 4’10” and has long gray hair. She looks to me like a retired good witch. They call me into the blood lab, which is a 15’ square room with five stations for taking blood. They call in the little old gray-haired lady and she sits down at the station next to me. They start asking blood lab questions. They ask the old woman her birthday, and she says October 4 1922. She is 83. They ask, Have you been pregnant in the last 3 months? We all have a big laugh at that one.

The tech will not take blood thru the PICC line, they tell me they have to check me in through ER to do that, a RN has to do PICC draws, and I say forget it, just jab me the old fashioned way, which a blood lab tech can do. I thought the PICC line made things easy? Some bureaucratic madness?


Young John pointed out to me this am that I have lost all the hair on my right calf, and some on my left. Must be because I cross my right leg over the top when I sit on the couch. I am going to find the spot this afternoon for the tripod camera shot, and every day take some pictures of the changes in my body. This will be gross but scientifically or empirically interesting. I would think over time you could watch a time lapse of my hair falling out everywhere, and maybe my left arm shriveling and right arm growing, and stomach going in and out, and who knows what else. I don’t think I will post these photos, you can all breathe a sigh of relief. Maybe not until they show something interesting.

I volunteered to work at Hospice of SLO this morning; sent them an email and said here I sit with time on my hands. They are a volunteer group that offers bereavement counselling services to individuals and families. I must admit I have a little trepidation about volunteering for such service. I haven’t really had to deal with much grief or death, and in fact only recently remarked that (knock on wood etc.) I sure seemed lucky in not being dealt a lot of the tragedy that many seem to suffer. My dad died at 82, my Mom is fine, all my siblings are fine. They say if you look around the poker table and you can’t ID the sucker, you’re the sucker. Let’s hope the fact I have leukemia is the tragedy. Anyways, I have some fears about trying to help somebody that is dealing with death and dying, but I figure I need to pay this forward and hopefully not need it. Maybe I can learn a thing or two also.

Doctor just called and says I need some blood; my hemoglobins are back down to below 8, which is the expected result from the chemo. He schedules some blood for Wednesday, and I will have to lay low tomorrow.

Website of the day, this rocks, from Lisa S., thanks Lisa
http://www.monobrow.com/monobro/bro-48.shtml

I went into the garage at 6am to throw the load from the washer into the dryer, as today is laundry day. When you have kids you know that you have to check the pockets when you do laundry, or else you melt the chapstick on the wife’s nice new pants. I throw all the money and other stuff in a pile on the dryer. I happen to glance over at the miscellany pile and what do I see? Angels. Four angels. These were not here when I left 4 weeks ago. They must be a cosmic message. Hence, today’s Eyebrow Lowbrow. (Dana just ruined this for me and told me these are Cupids. Dang. Well Cupids are OK I guess.)

Narcolepsy

It’s Sunday and I am half watching Tiger and Phil duke it out on the golf course, good stuff and certainly more worthy of our attention than Darfur. The chemo from Friday has settled into me and made me very lethargic, narcoleptic even. I woke up at 5:30 today, read the paper and knocked around, and was back asleep from 9:00-11:00. I think it must be the lack of steroids as much as the chemo inputs; the last dose of prednisone was Thursday. Last night I tried to watch tv from 6:00pm on, and I don’t think I lasted more than twenty minutes without a nap. I gave up at 10:30 and went to bed. Not like me to sleep much, but then I haven’t been on chemo that many times in the past. The gas bomb in my gut is kind of annoying, too.




















Trip to Stanford
On Friday, we left SLO (so insignificant I had to add it to the map, white block!) at 6:20am for Stanford (red star on map). An uneventful ride, traffic wasn’t too bad, and we arrived at 9:30, just enough time for a coffee and bite before the 10am appointment. See the map. We go into the coffee shop at the Stanford Cancer Center, and a girl comes in right behind me, and tells the girl behind the counter how horrible she feels, she has this terrible cold, probably the flu. She is on her way to work, and I think what an idiot, she comes in this place where they service all these susceptible people, and she doesn’t put on the paper mask let alone stay home. I should have said something, but I didn’t.

We go check into the Infusion Treatment Area (ITA), and are quickly brought into the back, where there are a number of rooms open to a central hallway. These are where people are given chemo and blood, and the nurse is about to put us in the most central room but I ask if there isn’t one with a window. What the heck, we are going to be here for maybe 5 hours. She gives us the end unit, much more private.

Nurse Linda (all ITA nurses are designated ‘Linda‘, as it turns out) comes in and goes over the day’s schedule, which is basically a blood test to see if hemoglobin is needed, steroids before Elspar to head off an allergic reaction, Vincristine and Elspar chemos, blood if needed. It turns out Dr. Majeti specifically didn’t order blood to correct the low hemoglobin count on Wednesday because he thought hemoglobin would come back on it’s own. He is a smart guy because that is exactly what has happened, meaning I am making red blood cells and have turned the corner on that too. Still low at 8.4, but workable. It means I will be light-headed, a cheap drunk, but I won’t have to sit here an extra four hours getting 2 units of blood.

The Elspar has given me a bigger rash each time they have given it to me, every 3 days, and Wednesday before I left nurses, doctors, pharmacists and students came in to see the rash. They measured it and photographed it, poked it and talked about it in hushed tones, so it wouldn’t hear. On Wednesday the rash was like the whole bottom and triceps area of my right arm, bright red and burning. Now it has faded a little but swollen more, and they are very interested again. So in comes the nurses and pharmacists to figure out where they are going to give me today’s shot.

They say they are only seeing this in the last 6 months, that they have to call the people that make Elspar and see what has changed in the process. I love that about Stanford, they are so intimate in all phases of the chemo process. At the same time I can picture the new guy working at the Elspar facility, flicking his cigarette ash into the batch, looking like one of the cooks at the Dutch Inn. They ask me where I think they could give me this shot, knowing that I will probably get this 10”x10” burn-like rash from it. I say, not the stomach, not the ass I have to drive and sit, how about the thigh. No, the thigh is out, how about the stomach. I hate it when they ask you but already know the answer. They give me the shot in the right side of the stomach, and now I have this big burning rash that hurts when my fat rolls roll over each other. Fortunately the gas bloat from the chemo has me expanded like a basketball, so I have no rolls, and it’s not too bad.

We get out of Stanford at 2:00, go over to F Ground to deliver a card and a modem to the 25 year old that will be my guinea pig for laptop library. The poor guy, I gave him an old Toshiba with Windows 95! If that works for email, anything will. It feels pretty odd walking up to F Ground without the HEPA. Dana and I are back on the road by 2:30, perfect timing for beating the traffic. Dana drives the first half, as I am totally wired and narcoleptic all at once, jazzed on all the steroids and slammed by all the benadryl and chemo. I am literally jabbering one minute and snoring the next, it is bizarre. An uneventful ride home. We stop in Salinas at Outback Steakhouse for a burger; I get mine well done, what a shame. I am still carrying neutropenic fears, even though my WBCs are at 3.6, almost in the normal range.

Yesterday was a regular old mundane day, except I have this tired thing going on. Went to Mike’s basketball game, always exciting. Took John out for some driver’s training, license by May, won’t that be liberating (for me).

Tough Guys
I wanted to explain why some people got WBCs named after them, and realize there are a few I should have included. Butch Cabral was the toughest guy in high school, really kind of psycho, indiscriminate in the beatings he laid on people. John Nelson was the other toughest guy in high school, much more discriminate with his beatings, and much tougher because he was a minority in a white city. He survived many years of very bad times and resurfaced as a survivor ten years ago. Mrs. Mullaney is a friend’s mom that was always on top of what was going on with a lot of kids. You couldn’t sneak anything past her. We would be in the kitchen plotting some illegal thing at 2:00 in the morning, and from behind some door Mrs. Mullaney’s voice would come, “I wouldn’t do that if I were you Fiore.” Always got me wide-eyed. It was like she never slept.

My mom went back to college and got her masters and became a teacher. She nursed twins when I was 2, my sister was 4 and my brother 5 and her mother was bed-ridden and dying. She always did whatever was required. Tough as nails. My sister Joanne was living the high life in Manhattan, but because she wanted to ride horses she joined the Central Park Mounted Corps or something like that, riding horses around and snagging muggers. When a guy tried to mug her she kicked the snot out of him, not noticing that he had sliced her with his straight edge razor. Don’t mess with Joanne. And Frank took on like half the Gardner family back in elementary. This was that family of Neanderthals that could kick anyone’s ass, and if one couldn’t do it there were 2, or 3, or 4, and each one bigger than the last. They decided they had to beat up my brother for some reason, but he told them he couldn’t fight in his St. Peter’s shirt, so they followed him home, he changed his shirt, told my mom he had to go fight these guys, went out and fought and got his shots in and that was that. And Frank wasn’t a fighter, he was a calm guy. He is a tough guy too for how he handles the physical crap life is handing him like arthritis and feet problems. Yanks up his whole life and moves from Maine to New Mexico, and thrives.

I should’ve thrown in a few more tough guys. Dana is a tough guy, for being able to go to a foreign country and just fitting right in, no anxiety. And for toughing out her Mom’s cancer. A couple of my friends out there that have dealt with depression and bipolar in family members are as tough as nails. You all know the extra tough people in your lives, and what makes them tough. Ontogeny recapitulates phylogeny, and those tough genes keep recycling.

Here is the first of the Lowbrow Eyebrow photos. Disconcerting. The color mismatch is too severe, I need gypsy moths, not tomato hornworms.



Here is a copy of the email I sent to cafeteria services, which they were thankful for:

Dear Sir or Madam,

I was a patient here at Stanford from 2/11 - 3/2, in room FG44, receiving treatment for leukemia. Let me start by saying when I arrived I weighed 170 pounds, 5’9”, 49 years old, surfer, golfer, in pretty good shape. I am leaving today, a week ahead of schedule.

When I arrived I assumed I would be getting sick and losing weight while on chemotherapy, so I ordered big meals from your menu. The food was quite good, and I gained eight pounds. I did not get sick on chemotherapy and I started walking the hospital corridors to maintain some strength and weight control. Still, I ate more than in the past because I wanted to be strong to fight this disease.

People love to complain about hospital food, but I found the food quite good. Bacon was good, eggs were good, oatmeal was good. I ordered enough food for breakfast at 8, leftovers at 9:30, lunch at 11:30, soup at 2:00, dinner at 5:00, soup at 8:00. I tried almost every lunch and dinner item you have, and everything was good. I almost always got everything I ordered, and always more than enough. I may be legendary for the day I experimented to see if I could order 2 of each meal; when they saw I only ordered 1 dinner, they added some rice.

In short, I left the hospital yesterday weighing one pound more than when I entered. I walked 4 miles a day or more while in the hospital, never got sick while on chemotherapy, and feel healthy as a horse. I attribute some of this to the good healthy food I was given while there. Congratulations on a job well done. Please share this letter with your staff.

John Fiore

A mundane day

It was great to be home last night, but the dang hospital routine was hanging on me like a 3-week boot camp. We never did shave the hair in the hosp., just wanted to beat the traffic and get home, and we thought Mikey really wanted to pluck some. He was a little grossed out – if you used the force to say pick a potato chip out of your hair, you got about 30 hairs. See the photo. Mike took a pluck, and was about to start grabbing fistfuls, so we agreed it was time to shed.




So at 10pm we went in the yard and left the hair out there instead of all over the bed and house.





Dana was starting to feel her cold coming back all day, and by 11 pm was asleep in bed. I, on the other hand, was wide awake and banging away. Dana was going to sleep on Mike’s top bunk so as not to infect me – going to be a little cautious until the WBCs are way up there. I told her just to sleep in our bed, she needs to recuperate more than I, and I am fine. Not only that, I am used to the foreign bed at this point. So she goes to bed, and finally I go to bed at 12:30, just as in the hosp, and fall asleep at 1:00. Unfortunately I wake up at 5:00, waiting for the stupid blood draw that of course is not coming. Damn routinization. Wish I had asked for a sleeping pill for a couple nights, should’ve anticipated this.

Dana was up early too, and we cuddled and cried and talked on the couch for a long time, working through a lot of tension and emotion until the boys started rising at 7:00. Sure was nice to be home for the day, and it sure was easy to fall into the old ways. Part of me was standing back and observing, though, thinking about how you can put a teenager in a bad mood by working on the wrong stuff first thing in the morning. Dana and I were actually in reversed roles for a while, as she was getting annoyed at having to sign Mike’s missing assignment sheet yet again, and I was saying now is not the time to fix this ongoing problem, not right before he leaves for school.

I had a bowl of cereal for breakfast. No bacon, no cheese. Dana made some eggs, so I had eggs. Paid the bills. Filed. Made calls and appointments, picked up prescriptions, got the laptop hooked up to the wireless network and internet. Canceled the AOL free trial. Mundane, daily, just what I needed. Taught Dana how to pay bills in Quicken. Went to get shoes for me, instead got shoes for Dana! She now has many, and I have not enough. Very political that.

We returned the new camera that was a gift in December, that I dropped the night of Mardi Gras Ball. In retrospect I was dizzy when I dropped it. Anyway, the door that holds the digital card in broke off, and we didn’t think Staples would replace it 3 months later, so I put on a short sleeve shirt and let the PICC line dangle out, and we go into Staples looking as sick as possible. The girl behind the service desk is busy, but the manager is there and says “Is there something wrong with the camera?” We tell him, and he says “We have that in stock, let me get one.” I start to tell him we got it in December, and he says it doesn’t matter and hands us a new one. Great.

My eyebrows are starting to fall out, and a number of women have mentioned that they do pretty good eyebrows. I may try to do something with insects, though, not live insects but drawings of insects as eyebrows. I took a lot of entomology in college; I have a degree in Plant Science with a concentration in Plant Pathology! Anyway, it seems to me insect eyebrows could be cool, different ones each day. Walking sticks. Lines of ants. Caterpillars on sunny days. Why stop at insects though? How about Putin and Bush? A dog and a cat? I may have to put up a whole web site, Eyebrows of the Day, just for this.

We have to leave at 6am to be at Stanford by 10am, the visit there will take 4 hours (2 units of blood, Vincristine, Elspar), home by 7pm. I better go to bed now. What a nice mundane day, nice boring blog.

Thanks for the WBCs

Well that certainly did the trick, all of you sending me those interstitial WBCs. Massive surge! All the best, some experienced, some still in the package, nothing but top shelf.

WBC hit 1.6, total neutrophil just over 1000, and I am already half packed at 10 am and rearing to go! A whole slew of docs came in around 8:30, just as I was finishing breakfast. Dr. Majeti, who has been the one doc I have seen every day and has been great at following up on everything for me, goes over to my white board and erases Make More WBCs, and erases Make More RBCs, and says OK, those are done. They are all beaming, and I am beaming and doing the Rocky dance, it must be great for them to give someone good news! And it is awesome to get it.





So Dr. Coutre asks Is there somewhere you can stay near here, you need to get your last round of chemo on Friday, and I say I will just drive up and thoroughly enjoy the trip, no problem, and he says OK, you can go home today. The skies open up, sunbeams pour into the room, a host of angels appear on the sculpture in the garden, harps play and bugles trumpet, and the hand of God herself flashes out of the heavens and slaps me upside the head!

Of course there will have to be a visit next week for a bone marrow biopsy and spinal tap, but I tell them that was a great movie and I’ll see it again and enjoy it, and there will have to be precautions etc. and I say No Problem I Am Da Man at following instructions, which (stop laughing) I am in this particular case and will continue to be.

I call Dana right away, tell her to forget packing to come up here, just grab an empty suitcase, let’s go Are you in the car yet? I call her again at 9:30 and she is running around the house sterilizing surfaces, I say Look forget that, GET ME OUTTA HERE! Get in the car and drive! She better be on the way. I am sitting here filled with some very mixed and powerful emotions, people are visiting to say goodbye and I have tears in my eyes, of joy, and this huge release of tension like HA HA HA HA we pulled a Fast One there Shit that was close WHEW. And then I think Well, calm down stupid it isn’t over yet, there’s a long way to go, don’t forget cranial irradiation for 10 weeks this summer I think it is, and next week’s bone marrow biopsy and spinal tap could say remission is all a big illusion just yet - We’re sorry but you did pull a fast one Mr. Fiore, get back in here. and how will my body like the next phase of chemo, EARLY INTENSIFICATION sounds kind of ominous.

Now that I have talked myself back down to where I can at least feel some gravity, I have to walk off some of this energy, spend my last $3.19 at Starbucks (that’s what I need, caffeine), find a big card in the gift shop for the staff here. I need to get the nurse to come disconnect me from the antibiotic IV drip, I must say I hate being tethered.

1pm now, waiting for Dana and Sandy the nurse. Sandy needs to go over the whole book of stuff I have to do. Dr. Majeti came in at noon and told me about my appointment for Friday, and confirmed that we would find out if I was in remission with next week’s bone marrow biopsy and spinal tap (BMB&ST). That needs a better acronym. I am still surging with emotions and tensions and I am crying when I thank him for all he has done, and even crying now trying to write about it. Such a huge release of pressure, and yet knowing there is still so much more behind it. I have to finish packing and do something else for a while.

On the way out of the hospital I gave the nurses the jade thingy, told them how impermanent it was but made of rock, and to please have each nurse take a piece of jade from it in relation to the care they felt they gave me, it’s a zen thing. I did give a special piece to one of the nurses that had especially admired it, and she told me that although she was raised Catholic she was the middle child and had rebelled and become Buddhist. She seemed like my antithesis, very quiet and contemplative and soft, but for some reason she told me this story that had some tangents to my life.

She said she found out very recently that her father was eight hours from becoming a Catholic priest when the Japanese attacked her village in the Philippines, and the whole village had to escape to the mountains. The ceremony never occurred, and he fell in love with her Mom soon after and she was thus eventually born. She did not know he had ever contemplated priesthood until an uncle was having a house blessed recently, and ten priests showed up in the village for the ceremony. Oddly her father seemed to know them all and played basketball with them, then the priests all dressed in their habits for the mass. When they started reciting the mass in Latin her father joined right in, and her grandmother said “Ah he still remembers it perfectly.” The story was out, and she had gained insight why her religious choices had upset her parents.

I told her as a middle child she was destined to rebel. I myself as a middle child, 6 years old, hid in the woods the day of St. Peter’s School signups, per the instructions of the neighborhood kids. This was to ensure I could go to public school in a state that was 60% Catholic, and it worked. St. Peter’s was full and I was the first to attend the superior public schools of Warwick RI. I know that is a tenuous and twisted leap to the priest story but I am going with it.

Man oh man, what a strange and bizarre round tripper this is. Three weeks ago I was going to Stanford in an ambulance, wondering if I’d ever see my kids again, at least expecting to get very sick, a whole jumble of anxiety and fear and grit and determination and disbelief. My wife was driving behind the ambulance, wondering if we'd made love for the last time and didn't even know it. I guess she knew she'd see the kids, and I knew I wasn't dying just yet.

Now here I am driving back to SLO, just filled and spilling over with joy and relief and elation. As we come into SLO I am trying to prepare for walking into the house and not just totally breaking down, because I don’t want to freak Mikey out with how scary the whole ordeal really was and is. So instead I just totally break down about 3 miles from the house, that way I look like I really am ill, red eyes and tufty hair coming through the door to grab the boys and sniff their heads.

It is all so damn joyous. The kids have teenage heads now and don‘t smell like those great little baby heads, and all these other little things are waiting that feel so good, like piles of bills to pay, the lawn needs mowing, the dog gives me the big greeting and sniffing, it’s fantastic. I am here in SLO. Mike and John both note that I look a lot worse than when they saw me 2 weeks ago, and I start crying again and tell them Well, I’ve been in isolation and I am just so damn glad to see and hug you guys. Over dinner I explain a lot more about what is going on with my blood chemistry, so that they can understand more of this, and they do.

I feel like I probably should have gotten one more dose of blood before we left, but I have to go back Friday for the last chemo of this round and I’ll get some then. Feeling a little light-headed with a slight headache, but then it’s been the most emotional day in 3 weeks. Sandy the nurse has prepped us before we left with all the info we need, reactions to look for, and the most amazing thing is I don’t have to wear the HEPA mask except if I see construction sites or dust clouds, Aspergillus fungus is the enemy. The PICC line maintenance is pretty critical too, can’t let it creep in for more than 1 cm, so we’re going to be anal on that.

Sandy says I should have some Benadryl in the car in case I have an allergic reaction to Elspar, and I have an anaphylactic reaction, i.e. throat closure. This gives me this great new idea too, the Papal Tracheotomy Kit. Combine a pen knife with the Papal Seal, tube with the Papal Seal and a little antibiotic packet, bingo, the Papal Tracheotomy Kit. I know that is not really funny, but it would sell like hotcakes. I am going to go try to connect this Neutrino laptop on my wireless broadband network for the first time, send up this Blog, fix the Charter Webspace photo problem.

This is lunch from Double Menu Day!

Got any spare white blood cells man?

WBC hit the magic 1.0, parole is imminent! The docs are toying with me, said probably not Wednesday, but things are looking good, pretty sure by Friday. I think the docs thought I was getting lazy with what I was requesting from my bone marrow, and also Accounting called them and said Don’t let Fiore go, this guy is golden, we charge for all extra menu items and he is on fire! So I ordered a lot less today, increased the pace on the walks and hit the 10,000 steps (actually 3000 to go as I write this at 7pm), asking for WBCs.

And, I got a card in the mail today that read “To John, Happy Birthday + Best Wishes, Larry Bird ”. Unbelievable. Dana sent this card to Larry Bird and asked him to sign it and send it to me, and he did, that is so cool. The nurses say I can’t let anyone touch it, I need to protect it, so I have it in my underwear right now. Most of you don’t know that I offered Larry my back as a transplant just before he retired, but he turned me down as it would have been about a foot short on him. I love that guy, I am naming the badassest white blood cell I can find after him. Dana you rock! I was impressed the second I met you, and I am going to be impressed by you the next time I see you too. Real impressed!

Kickass WBCs
Back in the college days I learned that memory exists on a cellular level - Ontogeny recapitulates phylogeny, so to speak. Meaning the history of the evolution of the species is reflected in the evolution of the individual. So knowing that I would never shave before an exam, in case what I had studied was in those cells that would be shaven. I think my WBCs that are left are probably some of the meanest toughest scrappiest WBCs around, and can kick most WBCs asses any day, because they remember all those other scraps.

Almost all the other low WBC patients (neutropenic) are sick with some level of infection, and they have hardly if ever left this isolation ward. There are eight patients, I think, and I have only seen one other, and she is about 24 with a husband and 1-year old, and looks healthy. Lots to fight for, me too. Anyway, my WBCs compel to go roam the hospital full of sick people, just to go and pick fights with some germs, they need the workout and aggression release! It finally dawned on me while I was passing the Emergency Room full of hacking spewing people, I have to be picking up a germ here and there, although I scrub like I am going into OR when I get back to sanctuary.

My last two WBCs (after Patton died of old age), Joshua Chamberlain and Ghost 4-6, have recruited Genghis Khan, Evander Holyfield, Larry Bird (never loses), Butch Cabral, the ‘03-05 New England Patriots, the ‘04 Red Sox, John Nelson, Mrs. Mullaney, Joanne and my Mom and big brother Frank. And all the badassest dudes you ever heard of but I can’t think of. These WBCs will kill any germ that even thinks of touching me, and are in fact out looking for them in the bars and gyms of my body as we speak. Dana took ten days to beat the cold, I kicked it in 3 (OK, I am ignoring the antibiotic IVs I am still getting). I have a small but growing army of really nasty, street fighting, gouge your eyes and squeeze your windpipe killer WBCs. Don’t mess with them.

I was considering my cosmic diatribe of yesterday too, and in retrospect, if I am even close to right, you could each donate me a couple or more of your badassest WBCs too. I would even take raw recruits, hell, we’ll train them to kill. Here is how we do it. If we are all cosmically connected at some God/energy level, you basically send me the WBCs through your connection. Everyone’s connection is a little different, I am not sure how that works but I am not sure how my cable modem works and it does.
Dial up, turn on, kneel down, look up, put your hands together, look down, sing, shout, whisper, shimmy, shake, think it, however you do it, send me some WBCs. Whatever you can spare, don’t get yourself sick. I know a lot of you have been doing this, and it has helped, but I am looking for a surge here. I would say let’s time it if it weren’t for time bending and twisting all around the universe. Just do it when you can in the next five minutes. Tomorrow (maybe Thursday if it takes awhile?) the docs are going to say Well Fiore your WBCs took a nice jump, grab the wife, you’re going home to sniff your kids’ heads and get hair everywhere.

Why Me?
I was talking to a friend on the phone today and it came to me that there is a reasonable answer to the Why Me? Why did I get this? It occurred to me that I got it so that I could make this BLOG. I have always been an observer and a writer or thought I was. Why else would I suffer the joke of being completely healthy and in the hospital with a disease? So that I could walk around noting the weird, comical and tragic scenes, and the odd emotions they stir in me. It happened to me because I will walk up to anyone and engage them in some conversation in what is going on. While wearing a pink mask that I have to shout through.

I ran into another pink mask guy in front of the main entrance, right in front of the cafeteria, on the afternoon walk. I gave him the big thumbs up and he waved me to come over. The guy was maybe about 55, graying hair and scraggly beard under a hooded Minnesota Vikings sweatshirt, and his HEPA was not connected around the back of his neck. He says Hey buddy, how are you, hey can you show me how to connect this thing? So I wave him over to a less congested area, in front of the fake leather jacket, and there we are, dressed like homeless guys (this t-shirt is getting pretty ratty from hand-washing), heads and masks together, shouting at each other in this unintelligible language.

I show him how mine connects, hook through loop. He is fumbling away with it and actually pulls the mask down to his chin, and I say Man keep that thing on here. This is about the worst spot to do that. I tell him to put his thumbs on the critical pieces and he can feel it and he gets it. Tells me he is waiting for a liver transplant, his is full of junk and not working and just sloshing around and hurts all the time, and he sloshes it around to show me. He says he has to get sicker or the livers will keep going to other people first. What a concept.

Notes:
I continue to feel totally healthy. The cold of last week is entirely gone. I weigh 171, in spite of yesterday. I am hanging in here, staying entertained, reading less than I hoped even. Some things that used to interest me and that I thought would keep me busy have not held that much interest, like crossword puzzles or playing PC games, or TV.

On the afternoon walk I sat down at the Information desk with the Information lady, a nice 70 year old, survivor of something. I wanted to know how far away the nearest place I could buy eyeglasses was. I needed some high magnification glasses to do the bead kit Melanie sent me, and it turns out they were right in the gift shop. The lady in the gift shop didn’t want to just take a credit card number from me, but I pointed out that I could phone it in and send a gift to my room, no ID and no questions asked, and here she can see my patient bracelet. I have done this a bunch of times, and it is funny how people usually tilt their head when they consider whether you are scamming them.

Anyway, the Info lady had this collection of Jumble puzzles cut out from the paper. I am the king of the jumble, it is an OCD thing I have always had, rearranging words in my head, and I can usually do the daily Jumble in my head in less than a minute. So I asked her about them, and she says she does them but on a separate paper and then she sends piles of them to a friend. She shows me this drawer full of them, including the 6 letter 6 word Sunday Super. We sat there and had us a little Jumble competition, and it was close, she was pretty good.

Exploding patients

First the big news from the docs, which is essentially don’t ever forget you are human, you are stuck in this system, you aren’t going home Tuesday and we really can’t tell you when, your WBC is same as yesterday but everything is going great, we can only tell you the very day or maybe day before. The key count is not WBC anyway, it is this variant called neutrophil count, and that did go up but has more to go. If WBC is less than 1.0, it lowers neutrophil count because it is a multiplier in the formula; if it is 1.0 or higher it raises neutrophil count. Got it? My WBC is 0.8, so during yoga and walking today I told the bone marrow to make WBCs. It is written on the white board, Make More WBCs, Make More Platelets, Lose Hair. Things to do to go home.

OK. Lesson being don’t be a fool and set yourself up to be let down, which I kind of have. I also resolve to have some more talks with my bone marrow, let it know how important it is that it GET TO WORK. The trick is to remind myself I am way ahead of schedule, things are going great and this too will pass. As it shall. And lose the hair here, because what a mess it is making! Won’t stick to me, but damn if I can get it off my shirt. And is it those annoying tufty hairs on the top of my head, no, it’s the thick stuff on the side covering the giant moles. I don’t think it’s going to be selective for long though.

Hair Loss
It occurred to me today that I can start offering a new service for chemo patients that will undergo hair loss. It will be called Your Hair Was Warning You But Now It Won‘t. I have essentially been preparing for this for years, and know that the single largest problem with hair loss is you lose the head’s early warning system. No AWACS = many head smacks. What I mean is, and you don’t know this if you have a lot of hair, hair gives you this sensory signal to duck, and it saves your bean a lot of damage.

I know this because I didn’t get the message many times. Every time I did the laundry in the 5’ basement in that little house in New Jersey I clocked myself. My son Mike once saw me do the most awesome tae kwon do kick to a shelf I was just finishing installing in his room. Not sure how I forgot the shelf was there, since I was in the act of putting it up, but I gashed the heck out of my forehead, all my Irish and Italian came charging up and I took the shelf back out with a high kick.

Most embarrassing of all was the time I was on the throne, doing the crossword, taking my time. I was finishing up and I bent over to pick up the newspaper, and as I stood I was too close to the wall and gashed my head open on the freaking light switch, I mean blood pouring out gashed open. Again. Happens like once a week, one way or another, if I don’t wear a hat. Bald people don’t wear hats for the look, they wear them for the protection, from the sun and from their own faulty Advanced Warning And Control System.

New Invention idea - make a hat that has small metal sensors sticking out a couple inches, say 50-100 sensors, to enhance the hat’s early warning capabilities.

Balding kids
I took a long stroll today with the father of a 25 year old Acute Myeloid Leukemia patient down the hall. I don’t want to say much about another patient, but I wonder how I would’ve taken news like this at different points in my life. He is getting over being stunned and has a good prognosis, but hasn’t engaged in the battle. It is kind of like knowing you are going to be in a bad fight sometime soon, but you aren’t sure how to prepare, so you lay about and ponder. So I took his Dad around, real nice guy not much older than me, and showed him all the places you can go, places for putting (golf) practice not as confining as your room (forgot to ask Dana for my putter), and all important for that age, good places for girl watching, not that I use them but in case anyone asked.

We went all over the place, and in Children’s Hospital ran into a number of kids balding or bald from chemo, and looking really ill. This always gets to me in retrospect, and it was bothering Frank too as he mentioned how tough that would be, to have a kid that sick. Almost every time I go through Children’s, and that’s at least twice a day, I hear someone praising God, and I see some heart wrenching scene of sadness. I know from the moment young John the Larger was born the fear began, the fear that some day I would have to bury a child, and you have to live with that fear until you die and the kid hasn’t.

It all seems so random. So do I fear dying? My understanding is that the beyond is going to be so fantastic as to allow me to perceive the universe and God at all moments, truly at one with the Universe, and how could it be any other way? God is everywhere, omniscient, resides within us. Energy can neither be created nor destroyed. So this means my energy lives on and God is in it and it is in God. Cool. Profound. The universe is so vast as to be truly incomprehensible. It can only be this way, so there is nothing to fear. Or, there is nothing beyond, when we die our perception is done, in which case there is nothing to fear. What I don’t like about dying is not finishing what I started, meaning my family, and that‘s not really fear it‘s regret. That would be a regret I would have as I visited the other sentient beings in parts of the universe human beings will never get to.

I just asked the nurse her opinion on the bald/head smacking relationship, and after hearing my logic she says I am just a klutz. It’s possible.

The White Hat Rides Again
I have a new nurse today, Sandy; I have had maybe fifteen different nurses. Let’s see who I can list:
Bettina - Croatia, Danarubicin chemo
Kathy from London
Al from the Philippines
Lauren from Ohio
Michelle - Premed RN, Kittery Maine
Kelly the traveler from Nova Scotia
Kelly the traveler from ?
Susie from Cork, Ireland
Esther from ?
Chonn from Philippines -PICC line
Rebekah the traveler from Wichita Kansas
Aracely from El Salvador - The White Hat Rides
Kamikila from Hawaii
Aidella from the Philippines
Marissa from the Philippines
Lily from Denmark
Mendy from the Philippines
Sandy from Arizona
Rosalee from the Philippines
Richmond from the Philippines
Jose from the Philippines

There has to be at least ten I am not listing. Some of them have taken care of me a lot, like Lauren, Lily, Michelle, Esther and Marissa, and some just one night. They work twelve hour shifts, have real tough jobs here in oncology and must suffer some serious burnout. Some times when I go get ice or coffee it smells like someone exploded, and that is through the HEPA mask. I peek into the other rooms outside the isolation ward (double rooms) and there are very sick people in them, almost all sleeping. Signs on the doors say ’Fall Precaution’, or the toxic symbol meaning they are on heavy chemo.

So Sandy comes in this morning, checks me out, gets my story then regrets asking, and says those dreaded words. Today we ride. Another white hat day. And, save me some pee too. I instantly protest, as it happens to be double meal day experiment.

Double Meal Day Experiment
First of all let me say I have never really been a food focused person, I eat to live. I have often said if I could have my sustenance in a pill that would be OK, Dana will back me up on this. Aging has changed that and I appreciate food more, but it is not my focus. Now, remember the photo of my menu from yesterday’s log? The menu where I wanted to see how much I could get away with ordering from the menu? Tomorrow I am calling down to the cafeteria to congratulate them on actually causing a patient to physically explode, I mean to actually burst in the chair. Because the combination of double meal experiment day and the Fear the White Hat Syndrome was nearly lethal.

Breakfast came. Scrambled eggs, bacon, 2 English muffins, jelly, oatmeal, cream of wheat, apple juice, cheese, a banana, ketchup, peanut butter, salsa and whole milk (for nurse station coffee). Thankfully they didn’t deliver the hard candy I asked for. I made 2 sandwiches with the muffins, eggs, bacon and cheese. I saved the banana, oatmeal and cream of wheat for 9sies. Now in comes Sandy and gives me the white hat news, and I know I better start walking it out and off. So Frank and I go but we don’t get back until 11:00, and now lunch will be here in a half hour, too late for 9sies. The white hat waits.

Check the menu pic - for lunch I get the soup, Italian pasta with meat sauce, make-your-tuna sandwich kit, green beans, 2 bags of potato chips, a dinner roll, margarine, cheese packet, strawberry ice cream, canned pears, iced tea and chocolate milk. They left out the fruit cocktail, mixed vegetables and chocolate chip cookie. Girl said it was the heaviest tray she had ever carried. It turns out they had to leave stuff off the tray because the tray weight exceeded the union’s 40 pound weight limit! I save the tuna kit and cheese for 2sies, and hoard the chips to avoid vending nightmares. I do yoga after lunch, and that isn’t easy because there is not much stretch in the frame, it’s pretty damn stretched already.

I actually cause a minor leak in my PICC line pumping the 8 lb. weights. I wasn’t pumping hard, but felt this slight twinge and sure enough had squeezed a little blood into the dressing. Sandy checks it out and says What the heck are you doing, no more weights with the left arm. Great. First I have tennis elbow for ten months in the left arm, and now a PICC line for two years. Imagine what my arms are going to look like by 2007? That’s Arnie on the right, Ernie on the left. Sandy willl change the dressing at 4:00, she has patients scheduled to explode and crawl the floor and run 104 fevers, do I mind? Heck no, I am going for a walk, the white hat waits.

Off I go, usual route plus I throw in an exterior circuit, nice day, 1 ½ hour walk, topped off by a Starbucks mocha. I am throwing everything I have at the white hat, because I sense the dilemma I am in with the convergence of double meal day experiment and white hat day. I end up back in the room, drinking the mocha and jumping up and down trying to aid gravity and nature. I say what the hell, and make a tuna and cheese sandwich, we are going to force the system or die trying. In the end, of course, Sandy gets what she wants - I left the message at the desk this time, Please tell Sandy there is a Mr. Brown in a white hat waiting for her in 44.

For dinner they actually sent everything I ordered, only 1 meal but they thought I must’ve forgot something so they threw in rice with my bread and baked potato, pot roast, broccoli, soup, gelatin, 2 more bags of chips, peaches, ice cream, brownie, herb tea, milk and chocolate milk. I am saving the soup, potato and roll for later, but I don’t know, the nurses often eat a baked potato for dinner, I may seek a volunteer. What a day.