I Sing of Olaf

Memorial Day 2005. We honor our war dead. It is amazing to me that after all these years, the planet is still covered in what is essentially tribal conflict – Hutu v. Tutsi, Sunni v. Shiite, Muslim v. Christian, and on and on and on. Yet we honor it, by honoring the dead. What a waste.

e.e. cummings - i sing of Olaf glad and big... (XXX

i sing of Olaf glad and big
whose warmest heart recoiled at war:
a conscientious object-or

his wellbeloved colonel (trig
westpointer most succinctly bred)
took erring Olaf soon in hand;
but-though an host of overjoyed
noncoms (first knocking on the head
him) do through icy waters roll
that helplessness which others stroke
with brushes recently employed
anent this muddy toiletbowl,
while kindred intellects evoke
allegiance per blunt instruments-
Olaf (being to all intents
a corpse and wanting any rag
upon what God unto him gave)
responds, without getting annoyed
"I will not kiss your fucking flag"

straightaway the silver bird looked grave
(departing hurriedly to shave)

but-though all kinds of officers
(a yearning nation's blueeyed pride)
their passive prey did kick and curse
until for wear their clarion
voices and boots were much the worse,
and egged the firstclassprivates on
his rectum wickedly to tease
by means of skillfully applied
bayonets roasted hot with heat-
Olaf (upon what were once knees)
does almost ceaselessly repeat
"there is some shit I will not eat"

our president,being of which
assertions duly notified
threw the yellowsonofabitch
into a dungeon,where he died

Christ (of His mercy infinite)
i pray to see;and Olaf,too

preponderatingly because
unless statistics lie he was
more brave than me:more blond than you

My brain feels kind of like Olaf, and then I take the steroid to counteract the brain swelling and can’t sleep. I keep waking up at 4:30 or 5 am. Sheesh.
I do have these nifty photos of the new improved White Hat, check ‘em out!

The cranial irradiation is going OK, no major sunburns, some minor headaches, as I said, nothing else. As I emptied the dishwasher this am,two glasses fell victim to the numbmeup in my fingers, quite spectacularly too, as I crushed one between my arm and ribs as I dropped the other! Lucky not to get hurt there!

I played 11 holes on Friday afternoon, badly. It’s a funny thing in golf and some other skill games that you play good after a long layoff, then all the old mistakes creep right back in, all those old bad habits sneak right in.

I am getting really sick of watching the devastation on my body too. I have traded 20 pounds of muscle for thirty pounds of fat, weaker than Lara Flynn Boyle and looking like Nicholson. Whenever it gets to me and I vow to do something, I get tired thinking about it, then I go lie down. It seems to me that I am going to hit a long stretch of higher energy after the irradiation is done, and I better get my act together to have Life After Leukemia.

I got a card from Robert DeNiro this week, pretty cool. It said "Best, Robert DeNiro". I also received an invitation to have dinner with President and Mrs. Bush. Unfortunately they misspelled my name Flore, and it cost $2500 per person for the dinner. Dang.

Finally got this post fixed, sheesh.

Cranial Irradiation cont.

What was I saying? Oh yeah. Uuhhhhh. Heh heh. Urrrrrr.

Friday am early
It’s been an interesting week. On Monday I went into the Oncology Radiation Center, which we’ll call the Fry Shack, to be fitted for a new White Hat! You wear this hat to keep aligned with the machine that sends the DEATH RAYS into your skull. It is made out of this weird stretchy plastic mesh material, which comes in a flat sheet and they warm in a pan. They have you lie on the table in the position for frying, and then place this warm wet stretchy plastic goop over your face and head, and it clips into the table. They mold it down into your eyes, which you better have closed, and around the curves and giant lumps and deep gashes of your head. In ten minutes it hardens into this plastic mesh hat. If they find this thing in 2,000 years they will be sure the owner really looked like King Tut.


Tuesday I went back to the Fry Shack and they took a couple pictures of me in my new hat, to get their lasers and DEATH RAYS all lined up for the Armageddon to come. I asked a few questions, like would I call the dinosaurs and what other side effects would I have. They said the treatment I was getting was totally wussy, the real men get like 3 times the level of radiation for 6 weeks straight and then die. They said I would not call the dinosaurs, not get really bad headaches, probably remember my name and my address but maybe not where I parked. The doctor did say that the combination of spinal tap injected methotrexate and cranial irradiation did cause some loss of brainpower, i.e. you get stupider, but he said, you won’t notice. Ha ha. After he got up, he also said you might get a sunburn too.

There were a lot of problems scheduling the doctor that was doing the spinal tap and methotrexate injection, since it had to be done for the next 5 weeks. We finally nailed down Thursday morning, so yesterday at 7am I went to Sierra Vista for the 8am treatment. The doctor showed up around 8:45, and got right to work. I curl up into the fetal position and she starts poking this long needle in until she has found the nerve bundle that goes down my left leg. Somehow, without moving, I jump four feet and say “I think you’re on the nerve bundle”, maybe not that calmly. It was pretty strange, because it was so instantaneously extremely painful, and then gone. I’ve always loved that about some types of pain, just light you up and then gone. It was strange too that the first time she did it the pain shot through my hip, and the second time it was the calf and foot. I imagine she is barely touching this nerve bundle, but man oh Marathon Man, “It’s Safe!” She is very apologetic, and after some more fishing around she decides she can’t get it. The doctor at Stanford had a hard time, and this doctor had a hard time the first time, and she says it will be better to do this with Xray guidance. That means I have to come back at 10:30. I call the Fry Shack, who is waiting for me to finish this, and tell them to keep my order warm.

The XRay guys are da bomb. It is clearly easier to do a spinal when you can see what you are doing. They can’t see the nerve bundle, but they can see where they want to go, and it is all pretty painless. They tell me I have to lie flat for 24 hours! The first doctor wanted me to lay flat for 1 hour, and at Stanford they wanted me to lay flat for 3 hours. I get wheeled on a gurney back to the day treatment area, and the nurse says the Xray doc is very cautious with the 24 hour recommendation. I have to lay there an hour, have some lunch while horizontal (spaghetti and salad, that’s tricky), and then go across to the Fry Shack.

They are ready for me. I get on the table, they plug me into my hat, tell me there will be whirring and sizzling and popping as the DEATH RAYS bombard my skull, then I’ll get rotated and they will bombard the other side, and it will all be over in 2 minutes. Now normally I can control the fear reaction and my breathing, but when they all left the room and that machine kicked on, and all that whirring and sizzling started up, I could literally feel my brains heating up. I didn’t want to swallow or move in any way, lest I fry some unfryable part, and that didn’t help my anxiety level. I could feel my skin heating up, but I kept thinking I shouldn’t be feeling anything, and wondering if they were giving me the he-man dosage. Then it was over.

Started at 7am, home at 2:15, 1 hour of procedures, 6 hours of forms and waiting. I get horizontal, but not for 24 hours. At 5:30 Mikey and I go to his school, where he is playing and I am dealing in the annual Blackjack Tournament. I feel fine, a little warm under the hat. Mikey makes the final table, takes fourth place and wins an MP3 player. Home at 9, eat dinner, in bed at 10:30. What a day.

Today I go in at 10 am for DEATH RAYS. A great thing happened that will help my recovery. I had appealed to the Superintendent of Golf Courses for the county to reinstate my volume discount card and cart sticker from last year, and he has agreed. In ’03 and ’04 I laid out $600+ for these cards, and each year was injured by April. The whole idea of the volume discount is that at a certain volume, you save money. Anyway, they are giving me a discount card and cart sticker for this year. That is awesome.

And hey, listen up Mac, I went out Monday at Morro Bay and shot 91, 3 months ago I didn’t think I’d ever golf again, but sweet mother that felt great. I even went Mac on a couple holes, and I mean big Mac, rippling Mac, barking howling feed the kitty Mac. Short game was pretty iffy, but it always was.

Blog comments are getting really funny. I am bringing up Tim’s thoughts about the ir part of irradiation with the Fry Shack people, but it scares me to say anything negative with these people. One little nudge of the dial, one little oops, and it’s Chernobyl time for Johnny. I should point out also, everything they give me for chemotherapy causes cancer! It’s downright crazy! It’s almost like some sort of planned obsolescence of humans. Sure, you’ll beat the leukemia, but we’ll be seeing that colon of yours in 5 years!

I think I may be moving to Korea, or one of the other advanced countries, where old embryos can be used to save humans, and are not revered as ‘living things’. My toenail clippings are technically ‘living things’ but nobody objects when I throw them out. Americans are going to start leaving the country to get quality health care, and it will only be the wealthy doing this. This so-called ‘Culture of Life’ government is so full of shit. And to think GWB had a sister die of leukemia. Don’t get me started.

Sunday morning
Oops, a day late, I forgot to post this dang thing. I can’t seem to get the picture of the white hat I took on Friday to email to me, camera phones! I will have to post it later, or take a pic with a real camera tomorrow. I was fried again on Friday, and my head is lightly sunburned and I have a killer headache, maybe a cold or allergies and not from the DEATH RAYS. Dana is off to San Fran for the weekend with her sisters, and I am doing laundry and chauffeur duties, which mean watching golf. By next weekend I may be feeling pretty fried. I better go golfing later today, it's boiling hot here!

Cranial Irradiation

Uhhhhhh eeerrrrrrrrr

I feel OK


heh heh

Or else! Or what?

I get the week off from chemo, and catch a stinking cold! Either that or the pollen count is so high even those of us without hay fever are being effected. Pretty nice week off though. I have to try to get young Mike Fiore to the driving range today, try to rekindle his golfing passion.

The irradiation guy’s nurse called me yesterday, and wanted to know what I would like done. He had a message to call me and set something up. Seemed like an odd way to proceed to me, fraught with potential, the lunatic running the asylum. In spite of all the opportunity, I told him the doctors should probably stick to the prescribed regimen, which it turns out they were planning to do, and their asking of my wishes was so much bunk. First they are going to make me a new hat, to replace the White Hat, filled with holes for the DEATH RAYS. It also has laser guiding nocks on it, so they can laser-align me and ensure the DEATH RAYS hit the holes.

The nurse ensured me that the DEATH RAYS would probably not make me sick in any way, and in fact the dosage I was getting was wussy, George Bush had had nearly twenty times as much and look at him, heh heh, he has no problems with nucular rays. So I felt better about that right away. He suggested that my doctor should prescribe some steroids for the brain swelling, but I told him I was married and had little ego left. We’ll see.

Anyway, before we start with the DEATH RAYS I wanted to write down some of the possible endings for the story of my life, and maybe warm up for the 55 fiction competition in New Times coming up. The 55 stories have to be only 55 words, check it out at http://www.newtimes-slo.com/index.php?p=55fiction

Here we go.

MY LIFE
I lived to be 98 years old, but really struggled with post recovery, always wondering if one the leukemic bastards was hiding out somewhere. Within a year of full recovery I had to leave the house as my tirades were threatening the family. I became a transient and followed the Pan Pipe players from Peru, like a Deadhead only more solitary. I met an Inuit grandmother living in Anchorage that took me in and made me eat blubber as chemotherapy, and my hallucinations about the leukemic bastards ended when I was 72, and I became a scrimshaw broker.

OR

I lived another five years. In the paper it said I had fought a brave battle against leukemia. I went through another five years of chemotherapy but the little leukemic bastards were hiding in my liver, and the lack of alcohol allowed them to thrive. The numbness in my limbs had progressed to my lips and eyelids, so I kept walking into stuff when my eyes closed unexpectedly. When I tried to yell ‘Oh Shit’ it came out ‘Ashes’, and in the end I was cremated.

OR

I started inventing little fun devices that helped people have slightly more fun when they were having fun. Things like the Golf Beverage Caddy, which attached to your golf bag and held your drink so it never spilled. Or the Poker Pot Scooper/Stacker, that scooped and stacked your poker pots, enabling you to win even faster at the casino. In three years I was completely leukemia-free, but court suits from people with spilled drinks and tipped stacks drove me to bankruptcy and divorce. I died at 64 of cirrhosis of the liver.

OR

I became a writer of bad science fiction, but finally made it big at 60 when my book Driven got on Oprah. This was a story about a driving vigilante that starts to outfit his car for small acts of vengeance on stupid drivers, and it escalates on him, until he realizes that he is the psychopath, and yet he is a regular guy. When the LA freeways actually try to institute some of the ideas from the book for traffic control, drivers rebel. They saw me on Oprah, and a small violent group breaks into my house and drags me out to the street, where they drive over my broken body repeatedly.

OR

Having laughed in the face of death, I take up hang-gliding and para-sailing, injure both legs in a bad landing, get gangrene and become a paraplegic, ending the foot numbness problem. I take up wheelchair basketball where it turns out I have a natural talent – I can shove my numb fingers in the other guys’ spokes, bringing them to a dead stop. I went to the Paralympics, representing my country, but I was killed by Chechen terrorists throwing a fake Scud missile at Bush to scare him, but it lands on me.

OR

Having gone through two years of chemo, I become addicted to stool softeners. I die a year later from a really really really irritated bowel.

OR

It turns out that was a secret love note from Angelina Jolie on that picture she sent me, and not her signature as some thought, told you so. She showed up just as I ended chemo treatment and wanted to adopt me, to live with her in her Thailand jungle compound. Dana was not happy about this, having put up with me all this time and just now finally getting her kitchen redone. She smacked Angelina in the mouth, and her lips burst all over me, causing some reaction between collagen and vincristine and making whatever was numb before now necrotic and causing a chemical prefrontal lobotomy. My hands and feet were amputated, Angelina loses interest, and Dana designs a special place in the new kitchen for her big ‘Vegetable’. With no way of taking up bad habits, I ‘live’ another 70 years, draining the family and even the county coffers.

OR

We held this really fun barbecue to say ‘Yippee’, and Mac was there with ho-spice, and Pat was there with twisted references that leapt across three borders you didn’t know were there, and Nick and Dyan and the energy boys came, and all the great Sinsheimer folks with tons more food showed up, and people flew in from Spain and England and RI and ‘Bama, and we had a great time. We drank beer, and some people were smoking, and I thought ‘Oh just one cigarette, no problem.’ Two years later I died of lung cancer, bam.

OR

I lived another thirty years but couldn’t remember much of anything after the cranial irradiation accident. A PG&E truck ran into a transformer just as I was being treated, and the resulting power spike blew through all the protections and super-dosed me. We moved to a 10,000 sq. ft. house with a bitching ocean view, and a kitchen to die for, but I forgot who I was. Dana reprogrammed me to think I was Robert Barrett Browning, and I spent the rest of my life writing sonnets to her.

OR

Who knows?

Happy Mother's Day

Happy Mother’s Day, hope you all showed your Moms some love today! As a Dad, I love having to coerce and harangue the boys into getting presents and cards, then trying to get them to help make breakfast and clean up after. Ha, that breakfast thing didn’t happen. John did get up early enough to eat breakfast, and Mike and John both wrote thoughtful notes and got Dana an orchid, so we shared some love this morning! Now I’m tired from making omelettes and bacon, but we’re going to make paella on the beach at Spooner’s Cove in Montana de Oro, so I must cowboy up!

Had my last 2 doses of asparaginase (punchmeinthegut) this week, no more of that subtle horror show, yippee. Tuesday’s shot feels like I was in the PBR bull-riding finals and lost, and Friday’s shot feels like I was shot with a .38 2 weeks ago, dull pain but tender to the touch. I actually get a week off this week, NO CHEMO AT ALL, nada. The blood counts are on the way up, and we need them even higher for what follows May 16, cranial irradiation and spinal taps. Brain fry for 12 straight days, and a spinal tap every Thursday for 5 weeks.

I had an IV of Vincristine (numbmeup) on Monday, and I keep getting that forever I think. The numbing isn’t any worse on the fingertips or feet, but seems to move into the forearms at times, especially after dosing. That is some weird stuff. You know the feeling you get when the lidocaine is wearing off after a visit to the dentist? That’s it, that slight tingling, can’t tell if something is hot or cold, numb but sensitive feeling.

One hope I have is that the brain fry will make me forget that I feel lousy and I will be active enough to offset some of this muscle loss. This lack of energy is really compounding, losing a lot of muscle strength and thus having less energy. I have been hitting the golf practice area, and my wedge work has gotten much better for it. Oh yeah, I did beat Mike B, so his reign as world champ only lasted for 2 games – I am back!

So just a quick update this week, nothing of note. If you think it’s boring to read this, try living it! I am going to have to step it up this week. We may go fruit-picking at a friend’s farm on Monday, mega avocadoes, oranges, other citrus, mmmmmmm.

Chemo is Boring stuff

It occurred to me this week that I am probably already cured of leukemia, and the remaining 21 months of this chemo is just to bring the odds closer to 100%. I ran this by Dr. Spillane and he said that was right, most people just don’t realize it. So I am trying that on now, saying I have chemotherapy, not I have leukemia. Not sure about it yet; I don’t think I can get nearly as much sympathy with chemo as with leukemia. Looks like I get a week break from treatments after next week, let the body recover before we start phase III, late intensification. That starts with a bang, so I will need to be ready.

Another pretty dull week, chemo switched back to vincristine (numbmeup) and asparaginase (punchmeinthegut) on Tuesday and asparaginase on Friday, same next week. I could tell my counts were still dropping on Monday, from the cyclophosphamide 2 weeks earlier and then 8 shots of cytarabine, and sure enough my blood test on Tuesday showed I needed 2 units. They of course could not get the O+ cmv- irradiated ooddball blood I need, so we set it up for Wed. I went in at 9am on Wed., and was done by 3pm.

While I was getting the blood, I mentioned to the nurse that I really liked those do-raggy like caps the OR docs wore – the ones you see on TV have all these fancy designs on them. She said she’d see if she could get me one. Sure enough a Doc comes by a half-hour later and hands me one, not the fancy kind but the free pharmaceutical rep kind. I was hoping for Viagra, but I got NimBex, some muscle relaxant. That’s cool. I may go over to the uniform shop and buy a fancy one.

When I went into the blood lab on Fri. for another blood test, the tech knew me by name, and the receptionist decided to pre-fill a bunch of paperwork for me. When she sees me come in, all I have to do is say ‘Hi Raquel’, and she will drop my paperwork into the lab. I am not sure if this is good or bad, I suppose good, less time waiting around. When people are waiting for blood tests and x-rays, or in medical facilities in general, they are not sociable. They probably figure the others waiting are unhealthy, and rightly so. I’ve gotten past that and will start conversations, make comments on TV news, and tell everyone how to get free coffee in the hospital cafeteria. Just my way of saying that I am still the chief bull-goose loony!

Apparently Wed. or Thurs. was the low-point for my blood, because I was sitting at the breakfast table Thurs. and started a minor nosebleed. Platelets and WBCs are not included in the blood you get, as they can cause immune reactions and are not generally needed. The platelet and WBC counts were up on Friday’s tests of their own accord, and today I feel better, less leg cramping and a little more vigor. I started sneezing like a madman last night and thought I caught a cold, but today my eyes are all watery and I am still sneezing with no other symptoms, so it must be allergies. I am hesitant to take any more drugs like Allegra, at some point something has to interact. Remember the waste jars in chemistry lab, but you had to keep some stuff separate?

I am really struggling at keeping the weight down - hovering near 180. During the good weeks I can go for walks and do yoga, but I can’t seem to get my ass in gear when the blood counts are low. Quitting smoking didn’t help; actually maybe that is the whole deal, as every other time I quit the butts I gained 10+ pounds. I am going to look into some tai chi this week, I need a drill sergeant. I worry about tipping over with the numb feet; I have noticed a distinct loss of balance as the numbing spreads.

I fired Charter Internet this week and went to DSL, and I have to move all the BLOG pics, so if they all disappear I didn’t get it done.

Hakuna matata - bless you

I didn’t have much to say this week, so I didn’t say it. About the only eventful thing that happened this week is I didn’t throw up on anyone at dinner at the 1865 restaurant on Tuesday night. Our great friend Gerardo came in from Madrid, so we had a nice cookout dinner at Stacy’s on Sunday, and then on Tuesday Gerardo took us all out to dinner. I had a shot of cytarabine and of procrit that morning, and have never had any reaction to those two. Doesn’t it figure that, as we sit down at 1865, I feel this gurgling in the gut. Too late to take any anti-emetics; I grin and bear it. When the entrees arrive, my swordfish is bathing in this heavy reduction sauce, sitting on a bed of garlic potatoes. I take about five bites, and that is it. Dana and I are in this booth, and Lia is on my left, and has me trapped in the booth. Lia looks at me, sees that I am whiter than paste, and moves her seat over an extra foot, as far as she can go, and I appreciate the room. I wore the Indiana Jones hat, and I am considering that, or will I make it to the rest room?

The feeling fades. I sit tight, and drink another 12 glasses of water. We all get in a heated discussion of the Marketplace Project, which will put another shopping mall on the outskirts of town. Dinner is finally over, and we all go to leave, and when I stand the nausea returns like a tsunami – you know the wave is coming, but you don’t know how big it will be. READER WARNING – GRAPHIC NAUSEA SCENE AHEAD. Standing in the lobby to say goodbye to Gerardo it is all I can do to hold it. As we walk to the car I find a discreet garden area and finally lose it there, fertilizing the plants with what looks like stomach lining mixed with Alka-Seltzer. Feeling much better, we go home. I am thankful that nobody had to witness that, and I am sorry that it was such a boring week I had to describe it here.

I figured it was the cyclophosphamide from the week before, the stuff that really kicks me, but Nurse Sue thinks it was the cytarabine finally building up in me to the nausea point. Next day I take the anti-nausea pill, then the cytarabine shot, and I do that every day and have no further problems. Next week it is back to l-asparaginase gut smackers and vincristine the numbness drug. The numbness in the feet and hands is getting really annoying, totally messes with doing tae kwon do.

Started contemplating the Jade fountain I always said I would build. All the materials are here, ready to go, but the final design will not present itself. It was supposed to be this beachy thing, but that has faded, and now an Oriental rock garden/mountain stream is coming in, complete with Bonsai. Always wanted some Bonsai. It seems like it will be really big, though. I am going to have to ponder this further.

April 15 came and went. That was the day I would’ve died if leukemia had gone undetected, assuming three months from starting to parting. I know back in early Feb when I first heard I had leukemia and heard it had a three month fatality, I thought Well, I am not doing taxes, 4/15 is my dying day, sorry Dana. I am not sure how to consider all the days after this – bonus days? It all seems morbid to consider, so I may have to drop the whole notion. I have noticed that a lot of journals of people that go through cancer include days since diagnosis. That would be dX+73 for me. The weird thing is I don’t feel particularly mortal, no more so than in the past. Well, maybe a little. I read the obits page closer, and am cheered when everyone that dies is over 70.

Another strange thing to contemplate is that I may already be 100% leukemia-free. The next year and a half of treatment could all be for naught. There is no way you’d forego it; one little leukemic bastard hiding out in my spine or cranium and we’re back to square one, and of course that is how and why they ended up developing all these treatments in the first place. It sure would be nice if they had some Star Trek scanner and just scanned me and said, OK, this guy’s clear. I remember the episode where the crew comes back to Earth in the present day, and they are in a hospital, and Dr. McCoy passes some lady moaning on a bed. He scans her, gives her a pill, and says ‘These people are barbarians!’ I wonder how long it will be before they look at these chemo treatments in that way.

There were a couple of other big happenings this week. I got my finger slammed in son John’s door in January, and the finger was broken. The nail was broken in a diagonal line across the mid-point, and I have had a bandaid on it since. The nurses have all told me not to let that nail fall off, as it would be a big site for infection, so I have been wearing a bandaid for 3 months. It got to the point where all that was left holding the nail on was a spot this big – O – near the tip of the nail. The new nail was growing in underneath and was 1/3rd of the way out. So, I trimmed it all down to the last little nub, which finally tore off a couple of days ago. This has reduced my typos by 1/4th. I know the chemo impacts nail growth quite a bit, and I wonder if the gnarled beginning growth for this nail shows that or the trauma from being slammed in a door.

The other big happening is I received a card from Bill and Hilary Clinton. I have long since forgiven Bill for being stupid enough to provide ammo to his detractors by being so damn human, and I think history will measure him as one of the true global leaders of our time, so I was pleased to get this card. It also says something to me that of all the people Dana asked to send a card, 1 in 4 did so – Larry Bird, Arnold Scharzenegger, Robin Williams, Angelina Jolie, The Clintons, Vanna White and Michael Jordan. It says, they either have great PR machines, or they are people people.

Camping and golfing

Tuesday the 12th
Camping was all right, came back yesterday late afternoon and instantly threw the poison oak-covered dog in the bath. I hit the cold shower right after, to get any urushiol oil off of me, that’s scientist talk for poison oak oil. Cold water keeps the pores closed and you less oil gets into your pores that way.

The poison oak is really lush this year, with all the rain, and the paths are covered over in a lot of places, so we no doubt contacted the nasty stuff and had our faith in the Lord tested a little. Woody loves Plaskett Creek campground, and all his buddies in the raccoon gang there, and he parties with them all night. I wouldn’t let Woody sleep in the tent, because he already had gone in the bush and had the dreaded PO on him, so he guarded the perimeter instead, and that is a big job, since the ‘coons are plentiful and aggressive. They could kick his little 20-lb. butt too, but he is quick and willing, so he parties away with them, running through all the poison oak. He looked so tired in the morning.

We got up to the campground about 2:00 Sunday, set up camp, played some bocce, drank some beer. One of the guys brought some very good home brew, and we had some of that. Around 5:00 we all decided to take a hike down into Jade Cove and look for jade, since it was low tide, so away we went. I wasn’t too sure about this venture – it was hiking up from Jade Cove that first made me think there was something really wrong with me, back on January 15. It’s about ½ mile downhill to the cliff from the campground, then a somewhat slippery descent of 300’. This used to take about 3-5 minutes, one shot - no stopping. I let everyone go ahead and took my time.

About 1/3rd of the way down my thighs were spent and my pulse was at 125. I sat down and reconsidered, thinking more about the return uphill trip. Of course the other dudes were already down there, and what would they think if I didn’t show, that I was hurt or stuck? Would they come looking for me? Woody had gone ahead with Beauchemin, but he came back for me, so I continued down, took another couple of breaks and made it no problem. I hung around in the cove for an hour, then I started back out ahead of the rest, took a couple of breaks on the way up, and made it without any problems.

I was spent, though, and couldn’t last long enough to get a poker game going. Back at camp we had a feast of sausages and steak, more beer, guacamole and chips, brownies. I hit the tent at 10pm, and woke up at 6 am. Beauch was making coffee, the fire was going, so we heated up some more sausage for breakfast. Played some foot bocce (a variant that keeps the mud off the hands), drank coffee. Around 8:00 am we all decided to go back to Jade Cove. I felt much stronger than the night before, so away we went, same multiple break routine, no problems.

Saturday the 16th
Never did get any poison oak, and I consider that pretty lucky. I did get the big slam of chemo on Tuesday, and a spinal tap with chemo in the spine on Wed. I am starting to feel the chemo effects, a little less energy, a little more nauseous. I asked yesterday at the doc’s, how bad should I be feeling, and they said pretty bad, but you’ll feel worse next week. So there is that to look forward to.

I went golfing last night, played 11 holes. It was ugly and glorious all at once. We were going to go Wed. night, then Thurs. night, but it was really windy Wed. and the Red Sox were playing the NY Yankers Thursday. When I went in for my chemo shot on Friday am, I told them to shoot me in the left arm. I’d been avoiding that spot in anticipation of golfing, but realized that was keeping us from golfing. The karma of pain must be the fulcrum for the yin-yang of the swing plane. Sure enough, 5:30 I hit my tee shot on #1 at Morro Bay, a weak fade 270 yards, but in the fairway. It got uglier from there. I triple bogeyed the first five holes, and Mike B. said ‘This leukemia is great, I might kick your ass!’

We hooked up with the famous golfing Leary brothers on #6, and it all changed. I outdrove everyone, hit sand wedge to the green and 2-putted for par. Mike was a little nervous. I had to rethink the whole swing, it couldn’t be the athletic aggressive swing of the past. I decided to make it into the circle of life swing, a little Simba swing, hakunamatatta if you will. Just let the ball get in the way. Sure there were some more duffs, a few trees, some barkies, but I parred a couple more holes, had some good swings, and all in all consider it a good start. Mike did beat me for the first time ever, but that’s OK, his run is over. I am MacArthur, and Morro Bay is the Philippines!

I got the PC back up and running with a new drive, and I will have to do some soldering to try to recover the data from the old hard drive. The other old HD did die, the one that was making all the noise. Amazingly that drive booted up and ran until I had the new drive configured, and then it gasped and expired. I realized a lot of pictures are on the laptop, so I didn’t’ lose too much - pride, esteem, a hard drive, an entire catalog of photos I will have to redo. I will try to make up some Eyebrow Lowbrow while I am rebuilding the photo catalog.

Intelligent design? or Barely evolved?

Saturday April 9, No Cookout Day
There was one epic event this week – I hit a bucket of golf balls at the driving range. I didn’t hit them far, or straight, but I hit them. Had to swing easy, but that’s OK in golf, don’t watch Tiger Woods if you want to score because you are not him. If you or I swing like Tiger the ball will go sideways, trust me. It was good to get out to the range. Same old stuff too, Jack the golf coach could not shut up with the tips, and they are usually spot on, but give me a break, I barely have any muscles left. My legs were wobbling like a newborn colt’s half way through the bucket and I didn’t finish it, but it's a start. Next week, 9 holes, chemo take the hindmost.

After thinking about it quite a bit, it seems to me that my blood counts went down last week not in response to chemo, but really because of world attention deficit disorder (WADD). Everyone turned their attention to Terri Schiavo, then to the Pope, and here I am just now recovering from the low blood counts. Focus, people, focus.

Seriously, my counts are back, but the blood is still in the neutropenic range, so it was smart to postpone the cookout. The doc thinks it is the cytoxan that hammered me the most, which I got on March 15 (beware the Ides). That means the nadir (low point) was at 10-20 days. I am ending Phase II-A just now, starting Phase II-B Tuesday, meaning same cycle for four more weeks, meaning cytoxan on Tuesday, spinal tap with methotrexate on Wednesday, and the pukey 6MP daily for 2 weeks. Therefore I can expect another nadir from around April 27 to May 5 or so.

Phase III will start on May 10, kicking off with 12 days straight of cranial irradiation, to kill any leukemic bastards hiding in my skull, those nattering nabobs of negativity. That will probably not be a good time for a cookout. Maybe May 7 we can have a cookout? See how tricky this is? Anyone want to argue Intelligent Design?

Dana came home with a cold yesterday, so I am expecting to get sick, although I am still on antibiotics. Of course we all know antibiotics do nothing against the common cold. I am being obstinate and not wearing the HEPA mask, and she thinks the paper masks don’t do anything. She took the couch last night – I was going to take Mike’s top bunk, but he said I was too noisy. Kids are so understanding.
I am supposed to go camping tomorrow, overnighter to Plaskett Creek, about 70 miles north. No big hikes, no surfing, just play cribbage and bocce and drink a few beers. No alcohol with 6-MP, so I will be back on the no alcohol diet on Tuesday, but that’s no big deal. The doc wasn’t keen on the camping trip, but I have to get out of here at least every few weeks or I’ll go mental (more mental).

I have this great email from a friend that has finished chemo 2 ½ weeks ago – she says she is starting to feel great, has some energy, the world is looking up! Two months down, only 1 ½ years to go! The co-pays at $20/visit will total over $5K this year. Thankfully I am saving a fortune on gas by not going anywhere.

The Dark Side
My PC started giving me a lot of trouble this week. The drive that has my OS on it suddenly wouldn’t load, and this after I ran diagnostics on it twice. It had started to make that sick bearing noise, like an electric razor on tin foil, zzzzzttt....zzzzztttt, so I thought trouble was coming. Luckily I had all my photos, docs, and Quicken files on the other drive. Well, I farted around with Windows XP, trying to repair, reinstall, recover, until I had worked myself into that dark side state I was prone to before chemo, and now with chemo, no energy, mild fever, bad sleep, numb hands and feet, look out Mama this boiler's gonna blow! I yanked that drive out of there and gave it a good body slam. Except, oops, wrong drive. Anyone want to argue intelligent design? God meant for me to be like this?

Through some miracle of extreme PC sarcasm, the OS drive did recover, but I have lost all photos since January and Quicken since Feb., and all my wife's second grade typed versions of poems. And I need a new drive. I am going to try to switch the platters between the 2 drives, which Seagate assures me is a formula for disaster, but I have already proven to be an idiot so why not. The OS drive is going, the bearing noise is still there, it just gave me a reprieve so it could laugh at me. So, no eyebrow lowbrow today.

Quit yer whining

Monday noon
I just came back from the hospital where I had a blood test, but I won’t get the results for three hours, so I wait. I wore the old pink HEPA mask in the hospital, and that was probably smart although it cries out “This person has AIDS!” At first I thought that was just my weird thought, but I asked a number of people what they thought when they saw someone in the pink HEPA mask, and they all said AIDS. Think about it, and you realize how stupid that is. Why would you want to advertise what disease anyone has? And maybe it is all in my head, but it sure seems people react funny when I wear that thing, like I must be infectious. The outpatient room was pretty busy at French Hosp. today, maybe 15 people waiting, and you can feel the looks boring into your head.

On a side note, the NFL had to remove the word ‘gay’ from its list of words banned to go on jerseys, because Randall Gay was a member of the Patriots. What does it say about society when we ban perfectly good words because the ignorant attach stigmas to them?

What an ugly Saturday I had, filled with negative thinking and dark thoughts. The thought that I might have relapsed was eating me up, and I let it for a while. All the random pains that come with this disease, or do they just come from making it to 50, come to the front at times like that; knee pains, hip pains, various joint and bone pains, back pains, headaches, I was really focused on all my pains. Smart. And when you can’t get out of the house or really do anything, it’s hard to get distracted. Oh woe is me.

I’ve been running a low-grade fever (99.5) since Saturday, maybe psychosomatic, and the chills and sweats are annoying, but the fever is controllable with Tylenol. Had to sleep on a towel last night and change t-shirts twice, yuck.

Email quote of the day (I should really keep the quote of the day going because there is always a good one), from an old RI rocker with a little more hair than me:
“Let us know when the Stones and Elton John party will be. Maybe we can make that one. “

A joke, from www.thefurrymonkey.co.uk/jokes
A UNIQUE IRISH CELEBRATION*
An Irishman named Mike O'Leary went to his doctor after a long illness. The doctor, after a lengthy examination, sighed and looked Mike in the eye and said, "I've some bad news for you... you have a cancer known as Galloping Leukemia and it can't be cured. I give you two weeks to a month." Mike, who was shocked and saddened by the news, but of solid character, managed to compose himself and walk from the doctor's office into the waiting room. There he saw his son, who had been waiting. Mike said, "Son, we Irish celebrate when things are good and we celebrate when things don't go so well. In this case, things aren't so well. I have cancer and I've been given a short time to live. Let's head for the pub and have a few pints." After three or four pints, the two were feeling a little less somber. There were some laughs, some tears, and more beers. They were eventually approached by some of Mike's old friends who asked what the two were celebrating. Mike told them that the Irish celebrate the good and the bad. He went on to tell them that they were drinking to his impending end. He told his friends, "I've only got a few weeks to live as I have been diagnosed with AIDS."The friends gave O'Leary their condolences and they all had a few more beers. After his friends left, Mike's son leaned over and whispered in confusion, "Dad, I thought you said that you were dying from cancer. You just told your friends that you were dying from AIDS." Mike replied, "I am dying from cancer, son. I just don't want any of them sleeping with your mother after I'm gone."

On a more serious note, this is the best site I have seen for explaining ALL and some of the odds:
http://adam.about.com/reports/000086.htm

And this is an interesting site that explains why the odds don’t matter:
http://www.cancerguide.org/median_not_msg.html


Thought I’d be golfing today; still might get in 9 holes at the twilight rate and watch the NCAA finals with the boys, drink a beer or two.

Monday 6pm
It’s 6pm now, and I guess golfing is out, NCAA at home is in. We got the results of this am’s blood tests, and they are mixed but hopeful, I think. Platelets and reds are way up; WBCs are slightly down. My interpretation is that the chemo switch last week back to asparaginase and vincristine has slammed WBCs and they take longer to recover than reds and platelets. I did not talk to the doc, but he did not leave me any discouraging message, and I have a regular appointment tomorrow, so I think it’s all good news. I have to remind myself that this is a rocky road, and these chemo switches are going to have weird and nasty side effects. Don’t be surprised if I show my dark side, though.

I read today in some article discussing causes of cancer that since 1900 man has introduced 75,000 new synthetic compounds to the planet. And just think, they are giving me 1/4 of them as chemo, and another third as antibiotics.

I am beginning to think my Eyebrow Lowbrows are too small. I really liked the pic of Terri Schiavo and Pope John Paul touring the universe looking at galaxies together, and I didn’t get one word from you people. Wasn’t anyone at least offended? So today I will make it larger. That is my board on the left, and my future as the Silver Surfer touring the universe, zapping stuff and looking at my favorite galaxies, on the right.

April Fool

Saturday morning
Isn’t it funny how, just when you think things are looking up a little bit, life just reaches out and gets hold of you and kicks you in the nuts, slaps you right back down, pees on your head as you crawl out of the hole. I made two HUGH (for Joe Kovacs, inside joke, thanks Heather) mistakes yesterday. First, I talked the doc into removing the PICC line from my arm; hey, we don’t really need it, it was convenient for the daily blood draw but we don’t do that anymore, and there is no chemo that will require it coming up. It came out easier than oiled spaghetti comes off your fork. Now I should be able to start golfing again, work out with a little vigor if I have any vigor, maybe even surf. Second, I planned a BBQ for next weekend to celebrate a little, say thanks a little.

In this part of Phase II I am getting chemo Tuesday and Friday, and blood tests on Friday. So I went in yesterday and we did the work, couple gutshots (needles in the stomach, very painless spot), blood draw, and then removed the PICC line. By the way I am renaming all chemo to be more patient oriented, so this is now numbmeup, makemepuke, makeredbloodcells and pumpupthejam. Anyways, I came home, went to see the matinee of the movie Robots with Mike, real clever movie. I came home to a message to call the Doc, my counts are in the toilet, I need transfusions, call him. I call him, and he says go to the hospital and get two units, all your counts are low, WBCs, reds, platelets. I asked how low, and he said real low. I asked if it was the chemo, and he said maybe, but we probably need a bone marrow biopsy on Monday. And here I was thinking how much I had been missing BMBs.

So I pack up the hospital kit for a six hour stay, two hours per unit of blood and two hours for paperwork, and drive over to French Hospital, five minutes away. I check in at 6pm, and they have me scheduled for a 23-hour stay. At that point I am cursing that we didn’t get the blood test results by noon, because then I could have gotten the 2 units in the doc’s office and been done by 5. They bring me into a room where some 29-year old is recovering from colon surgery. Same as when this started, only the guy was a lot older, bt colon surgery then too. There is a ten person We Just Had a Baby party going on in the corridor. Love those babies, all merconium and sputum. I can’t even see babies in a positive light at this point, how sad.

The nurse comes in after five minutes, and I ask her to put me in a room with no other people, I have low WBCs, I am neutropenic, so she goes to call the doc. Ten minutes later I am in the isolation room, double doors, one bed, similar to Stanford. Except nobody has ever been taught how to use an isolation room – they are leaving that up to me. Fun, thanks. Wait until they see my consultant fee, they won’t make that mistake again. I am just fortunate they had the room available; my guess is they use it only when someone wealthy requests a single, and have forgotten its intended use as an isolation unit.

Nurses come, nurses go. I need to make a parody of T.S. Eliot’s The Love Song of J. Alfred Prufrock.

In the halls the nurses come and go,
speaking of reduced oxygen flow

As I reread this I realize I can’t parody it because it is too good; he yearns for a woman the way you end up yearning for life when it is threatened interchangeable, and he in fact compares the two:

And the afternoon, the evening, sleeps so peacefully!
Smoothed by long
fingers,
Asleep...tired...or it malingers,
Stretched on the floor, here
beside you and me.
Should I, after tea and cakes and ices,
Have the
strength to force the moment to its crisis?
But though I have wept and
fasted, wept and prayed,
Though I have seen my head (grown slightly bald)
brought in upon a platter,
I am no prophet--and here's no great matter;
I have seen the moment of my greatness flicker,
I have seen the eternal
Footman hold my coat, and snicker,
And in short, I was afraid.

That was quite a digression, sorry. So, nurses come and go, and at 9pm they hook me up to the first unit. They are having a little crisis at the local blood bank getting O+, and this blood needs to be some special CMV irradiated stuff, hence the delay. So I am here for the night. Dana comes to visit at 10pm; she has been in Santa Barbara for the day with a friend, and thought I was just popping in for a couple shots of blood.

I am at my house as I write this. I left the hospital at 7:30 this am, WBCs are still in the toilet but I am safer here than there. I am trying to stay positive on this, but I am envisioning going back to Stanford and Phase I all over, Noooooooooooooooooooooooooooo. Well, don’t panic until Monday afternoon. However, I am going to have to postpone that cookout for a month or so and see how this pans out. Grrrrrr.

Let me just vent this one thing, too. I wrote a letter to the editor of the local paper, the Tribune, to point out that we were having a blood donation crisis. They couldn’t print this, but the other stuff they printed, like why did we need to have 3 garbage cans when one was good enough before (recycling you idiot). The inane tripe makes you wonder how humans got this far. Don’t they realize MY STUFF is the most important?

I envision the Pope taking Terri Schiavo to God’s favorite places in the cosmos, as a reward for waiting so long to finish the journey. That would be nice. Hence, today’s Eyebrow Lowbrow

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