John Fiore 2.0

12:45 pm Dana here, the first round of stem cells are in. John is feeling pretty good, if a bit woozy from all the drugs they're giving him. But the first batch of Lisa's cells are in without a hitch. We are waiting for her to come up and celebrate with us! One more batch to go in but everything looks good!

John wrote the rest of this this morning before the transfusion:

Here we are at day zero, end of John Fiore 1.2, start of John Fiore 2.0. Everything is happening as planned. They are collecting additional cells from Lisa right now, 9:30 am, having collected yesterday as well. She must have gotten a call last night asking her to come in this morning. They have me all prepped with FK506, an immuno-suppressant, and they will use that drug to suppress the graft versus host disease reaction until the transplant takes. They will begin the transfusion some time around noon today, very anti-climactic. I did save a piece of carrot cake and asked the nurse if we could get a candle, but she didn’t think it was a good idea.

I woke up two days ago with mucositis, a very raw and sore inside of the mouth and tongue, a reaction to the irradiation and to the VP16. I just have to not grin and bear it. Oral hygiene is very important now, and difficult to accomplish with the sponge on a stick and saline solution I am restricted to using. I must be clenching my teeth all night too, because my teeth ache when I wake up. I cannot eat things like pancakes or muffins either, as they turn to mucilage instantly in my mouth.

They rigged me up with so many connectors for IV that I look like some kids Lego or K’Nex toy. There must be at least 8 access points on my tubing. Taking a shower and keeping it all dry is a major challenge. I try to accomplish this with Ziploc bags and lots of tape, but I am too hairy for this to work well, so I use the shower wand carefully and it all works out.

I sure do appreciate all the support and positive thoughts you all have been sending my way, and wish I could have all of you come visit us here, but the reality is the smartest thing I can do for the next few months is to become very isolated. The case nurse told me to only have direct family members visit; no windows open in the apartment; new A/C filters; mask on any time outdoors, i.e. to and from the car; windows in car closed; etc. Bubble Boy.

Manuel, Lisa, and Dana suited up.





Dana has been out looking for a closer apartment, and I think she has found one right here in Palo Alto, so we’ll have a new address soon. It's a little retro fourplex just a couple of blocks from downtown and less than ten minutes from the hospital.

Haight-Ashbury, 1967

Checked into E1 yesterday at 2:00 pm, and I have a pretty spacious single, E122, with antechamber Hepa filtering and scrub station. All visitors have to scrub and wear a gown and paper mask. You'd think you were in Beijing! We started the 'Fall of Love' party right away. I had a little foursome going with Zofran, Compazine, and Scopolamine. 'When they were.....Dancin' and singin' and movin' to the groovin. And just when it hit me, somebody turned around and shouted Play that funky music white boy!'

Everything was groovy, man, with a big dose (4000=milligrams I think) of VP16. This stuff was lights out - as they are dripping it in, I am taking a dive, feeling my blood pressure just plummet. The canvas is approaching my face, but my BP bottoms out at something like 90 over 60. I reel around the ring for the four hours of IV drip of VP16, but I am back in the game.

I feel OK this morning, just came back from a walk with Dana, Lisa, and Manuel. They have to wear gowns and masks in this room, so it is better to around, except I have to pee every 30 minutes. The docs came in this morning and said about half of patients get some level of burn from VP16, so it wasn't just radiation to fear. 50/50, good odds in Vegas!

Round two

Last Saturday we took care of one of the clerical tasks that needed to be done, the last Will and Testament and the Advanced Health Care Directive. Fortunately I don’t have much since the stock market was ravaged by the proclaimed ‘sound economy’. We still had to decide who would help Mike through the end of high school, and how I wanted my body to be used. Since I have a medically interesting body, it makes sense to send this battlefield of a body to medical research. We also documented a living will. Let me be clear here, though, I am not kicking it any time soon.

The Advanced Health Care Directive guides people at the time when I will be unable to make decisions. In that document you give authority to someone, typically a spouse. You can also direct any special instructions, and this is where it gets tricky. This is all Plan W, last resort thinking, usually something like ‘Do not resuscitate’ or ‘Send my body to Stanford Univ. Medical for research’. Here is what I gave as a special directive- if I become hopeless - send me to South Korea and enter me in a trial run that uses stem cells as a cure. Why not?

Thus I was forced to spend some time and brainspace thinking about death and dying, and that tainted my weekend a little. Like many warriors before me, I thought about running away from all this treatment, but there is nowhere to go where I won’t be dead in 2 years if untreated. And like most warriors before me, I cleaned my gun, checked my ammo, loaded grenades, and sharpened my bayonet and shovel. Hooah!

It’s almost 6am, and I need to take a shower without getting my central line wet, kind of tricky. The staff at the ITA is anxiously awaiting today’s fashion statement, which will be a very muted tan ensemble, with camo hepa filter covers on my respirator. Yesterday’s ensemble included gambling lounge pants, with cards, dice, Take A Chance, and other gambling items, very colorful, and this time I wore a nice blue shirt.

We got a call from one of the docs tonight; it seems they found more pockets of leukemia around the liver and pancreas. This means I am not in remission, but that knowledge only changes the protocol of chemo, adding a shot of Cytoxan. The next day, another doc comes by and tells me that a group of docs got together and decided the additional toxicity was not worth the result, so we continue as originally planned.

Thur 6am

The radiation machine is big; the business end of it reminds me of the sand worms in the Dune trilogy, or in 'Tremors'.

I am supposed to be getting pretty ill by now, but all I am getting is a rosy glow and some mild nausea pangs. When those come, I eat something. Lisa has been getting daily shots of Neupogen, and everything is moving forward. I have been getting radiation treatments 3 times a day, 7:30, 1:30, and 3:30.

The treatment only takes a few minutes of gowning up, a few more minutes to get set in the right spot, strapped in the sling that will catch me if I collapse. They then align the radiation blocks with the marks they have drawn on my chest and back that outline my lungs, and tape it all in place. Once that most critical alignment is all set, the nurses leave the room and turn on the beam for eight minutes of radiation. There is no sensation from the radiation; if there weren’t a sound of buzzing machinery, and a sign across the room that says ‘Beam On’, you’d never know you were being zapped.

The only thing I have to do in this is stand perfectly still for eight minutes. And that is a challenge. I try to stay occupied through this, counting the tiles on the floor, inventorying the room, trying to determine if the flashes of ‘Beam On’ are one-second intervals. Every two minute or so the nurse checks me over the PA system, and I let her know I am OK.

Friday – I am done with radiation, kept my queasy gut in check, thanks to Zofran and Atavan and Gatorade. The nurses in radiation therapy have taken care of me in these treatments, and the nurses in the recovery area kept me comfortable and informed. They are surprised that I am eating, and so am I since I do not feel that hungry.

All this week I have been lugging around a shopping cart with a backpack strapped to, containing 4 liters of solution, dripping at 150ml/hour. Just before I leave on Friday, they give me a new bag and up the rate to 250ml/hour. If I see a fire on the way back to the apartment I could put it out.

Saturday 8 am

Today I check into the hospital, unit E1. I am in no hurry. Lisa is feeling some effects of her daily Neupogen injections, headaches and bone aches, all expected. I am still queasy but hanging in there, definitely took some hard body shots plus a kick in the groin, and I feel tired. I call round two a draw. Once I get in the hospital they are going to hit me with VP16 chemo, and that should kill any bone marrow I have left.

Glowing reviews

Las Guapas celebrate Leti's (third from left) birthday. They are all wearing tiaras.

Me and the boys. You can see where my ears were cropped.

Round 1 goes to me, in spite of some hard rights landed on my head. It wasn’t easy getting to the arena. Sunday night we were driving up to Mountain View, and I was zipping along in the left lane, going with traffic, 30 miles to go, when my right rear tire blows out. I scramble over to the breakdown lane, and then move even farther away from the 4 lanes of traffic on the 101. I am not in a great spot, kind of soft dirt, my flashlight is missing, and the spare tire is covered by luggage. Dana pleads with me to get a tow truck, but I have enough annoyance without waiting on some tow and ending up at the apartment at 1:00 am and out a boatload of money and without a car.

Plus I would have to turn in los huevos to some motorcycle gang or Alaskan for not changing my own flat. So I change the tire, and the soft spot the jack was on was problematic. I have changed tires on that car many times so it wasn’t too bad, once I got a stabilized jack, but 5 minutes in the smell of dead animal wafts over us. Dana is thinking it’s a wraith or a necromancer, and I thought we were being stalked by death, so I worked faster. The tire only had 9,000 miles on it, so I think we picked up a nail. We got to Mountain View around 10:45.

Yesterday they started me on this 4 liter IV drip of saline, nourishment, antibiotics, and a touch of potassium. I will be on this all week, so I have a little handcart and a backpack full of solution, changed every day for another 4 liters. I cannot be far from a bathroom or a bush; I am considering Depends for the rest of the week. I had another chest xray, and will get those once/week. The radiation nurses checked that the blocks made from Friday’s measurements covered my lungs, which they did.

On Monday I also had a PET scan, which is a more detailed version of a CT, to see if I was truly in remission, and danged if I wasn’t. There are nests of leukemia cells near the liver and pancreas. I had asked the docs a few times what would happen in this scenario, and they said we proceed with slight modifications, an additional chemo. So when I got to the center this morning at 7:00, I was told that Blue Cross has to approve the new regimen and my radiation wouldn’t start until the 11:30 fraction. I was also told that my doc had written a strong letter to Blue Cross, and we had the consent sooner than it may have taken otherwise. I have a small room in the center, where I will pass time between treatments. It has a TV and bathroom.


Into the tanning salon I go at 11:30. The nurses in the radiation treatment facility are models of efficiency, so right on schedule we begin. I stand in the place they checked on Monday, put on the harness (catches you if you collapse), grab the handholds for support, and try not to move. The doctor assists with the first treatment, so they get the blocks in place, tape on some radiation monitors, and away we go. The radiation beam is about 30’ away, and the lights on the wall say ‘Beam On’ for the next 8 minutes. The nurse checks my status with the PA system to see how I feel, and I am ok. My hip hurts from standing still for 8 minutes, but I cannot feel any effects from radiation. I was in and out in 20 minutes.

One effect I do see is it looks like I have a mild sunburn. At 3:30 I have another treatment, backside this time, and my glow is a little better. One of the docs visits to tell me we are going to forego the additional chemo because they are concerned about the cumulative toxicity. I am fine with that, they are the pros, and a number of docs had met to discuss what course to follow. I think because I am healthy and my sister is healthy, they decided the new bone marrow and immune system would take out any transient leukemia cells. I continue landing lefts to the body.



Not to mention that the 10 radiation fractions of 120 rads (I think) each might kill any remaining leukemia cells. I had lunch and dinner at the Cancer Center, and I think the nurse was a little surprised I ate and wasn’t nauseous. We shall see after 3 more fractions tomorrow. I wore my superhero pants with a clashing shirt, and when I put on the Hepa mask I was a picture of style. It will be hard to top that. Those are solid combinations, jab jab right crossover, uppercut. So, I win round one.

Barry and Stacy, in Mike's home away from home. They are very caring and warm, and Mike will settle right in.

Any port in a storm

You people are nuts with the serial poem, in the last entry's comments. That Anon really added some good stuff.

Dana and Mike are out at an 8-mile training session with the TNT gang. Half-marathon is coming soon, October 19th. Dana and I came back to SLO yesterday afternoon; I had an 8 am appointment on Friday to have a central catheter put in, a pretty short procedure once they get you in the room. I slept through it after the initial lidocaine shot; they had given me an Atavan, and without coffee, I just went to sleep.














It was one of those procedures where you have an 8am appointment, but no food or liquids after midnight. You get there and are brought in at 8:45 into a prep room, and then into the procedure room around 10:00, and then to post-op around 10:45, and you wait around for an hour, drinking coffee and eating sandwiches, and you're out at noon. In my early days as a(n) (im)patient, I would get all antsy and annoyed.

I've learned. You can spot the rookie patients, they have nothing to keep them busy. Some pre-ops have TVs, some don't. This one didn't. I have to admit I looked like a rookie, as I watched my book and glasses walk away with Dana when they wouldn't let her come into pre-op with me. I showed I was a pro by taking a pre-op nap.

Lisa and Manuel in Montana de Oro

Lisa and Manuel came back from a nice trip to Yosemite on Thursday, slightly worn out from hiking and imagining what waterfalls must look like with water. They are visiting San Francisco today and/or tomorrow and generally touring the Bay area, and next Mon-Wed. they will visit the Napa area, sample the wine and food and stay at the Napa River Inn on the Napa River. They may have fish for lunch, and then siesta, so they could be post-snapper Napa River nappers. I couldn't resist.

Zero day approaches, and it is getting tougher to make light of my situation. We met with my BMT doc, who basically said because Lisa and I are both healthy with no secret freaky virus markers, this will be a piece of cake. The only bad news was I may get Lisa's allergies and still have my old ones. I was hoping to get rid of the aspirin allergy I have. So I am still mentally prepping myself for the brawl for it all, the fight to stay upright, knuckles without chuckles, all breath no death, the Boo-qwilla Thrilla!

They have tested me in just about every way, with only a PET scan remaining to be done Monday. Last Monday they measured me for the total body irradiation, and it was not what I expected. They do not lock me down to a table - I stand with my toes on the line and holding some handlebars, and they zap me. They measured all these thicknesses so they can make radiation blocks. Those block radiation in places so the amount of radiation is approximately equal all over. All the jokes popping into my head about density don't seem that funny.

Did I mention that they have to give special irradiation attention to the testicles, henceforth referred to as los huevos? I had a shred of modesty left, but it is gone now. As part of measurement day, I had to lie on the table, bottomless, with my legs splayed like a frogs', while all the nurses, doctors and students they could fit in the (big) room measured los huevos with calipers, rulers, scales, lasers, and muffin pans. They did volumetrics, measured hot and cold variances, did a sum of the squares and radial progressions (for deviance), and then created a model of how los huevos would look after irradiation.

This picture shows the huevos model partying with some of the docs. Note the hair loss, and the doc trying to run from los huevos.

And this picture shows how I should look after TBI (and some plastic surgery):

Note how skinny my left arm is from the PICC line, and the cramping in my right hand.

Speaking of PICC lines, Dana and I just changed the dressing on my new central venous catheter, for the first time. I am supposed to be able to do this myself, so to get an idea of this, you try this: If you wear glasses, take them off, and if you don't, put some on. Because when I try to look at my chest above the nipple, it falls under the edge of my glasses. Donald, just take off your eyepatch. Now, write your name on your chest so you can read it in a mirror. Pretty spastic, and I kept sullying my sterile area and had to rewash.

This was going to be a serious post describing how the pending battle is affecting us all; maybe tomorrow or Monday. In this Yellowstone pic, Donald caught me turning the white poppies into red poppies with Daunorubicin pee. Note the background where I peed the night before.

Yellowstone pics

It's Sunday morning. A lot of our plans are getting scrambled because my sister Lisa is having some inner ear problems. No Hearst Castle, no BBQ, but I hope tomorrow's Yosemite trip will still be ok for them. I really want them to have some fun on this trip and I have to go to Stanford tonight for the irradiation fitting tomorrow am. I think they are going to tie me to the table, so if I start hopping around like a sunny-side up egg the irradiating won't overcook me. 4 hours and then I will head back to SLO. I have to go back Wednesday night for procedures on Thursday and Friday, and then we get 'cooking' on the 22nd.

Here are some pics from the Yellowstone trip, and Donald is sending me more.

I had to get out the poncho to keep the pack dry.

Donald was wearing an eye patch to deal with the troubling double vision problem that cropped up just after he got to Bozeman. He has been ruling out some more serious stuff; hopefully it is just some minor vessel damage that will self-repair.

I borrowed Donald's Crocs to get through this creek and keep my boots dry, but that was the first and last time. It took too much time, so if I couldn't find a rock or log crossing I just waded through and got my boots wet.

Those little white spots in this pic are snowflakes, and it snowed in earnest for about a half hour. We had gathered a substantial pile of wood to make a drying fire.

This bear was strolling down the road until a car came from behind it and scared it into the bushes.












Bears love to scratch the trees for the same reason cats do.

Donald and I at the Mammoth area.

LP # No more

I'm lying here in my family room recovering from my (hopefully) last ever lumbar puncture with chemo. After patiently waiting for two hours, the doc got the job done faster and with the least pain of all 15 or so LPs I have had. I jokingly told the nurse before I went in that I would need a cheeseburger and chocolate shake when I was done, and when I got back she brought me a tray with cheeseburger, fries and a chocolate shake. Ask and ye shall receive!

Getting kind of sick of this whole ordeal, and just want it to be over. Either cure me or kill me, but quit farting around. That is not going to happen though, another year before I am cured or dead. So I am in this mindset lately where I don't feel like being positive - I am a tired warrior, not physically but mentally, even though I just had a break from the whole thing. Maybe that's why I am sick of it, because I had a taste of the normal life. I am going to have a long talk with myself and refocus, and I appreciate all the comments on the last blog, some inspiring words, beautiful poems, some crazy poems, helping me to regain that focus.

Some of you have expressed that you're uncomfortable leaving comments on the blog. Be anonymous! Anon. Ymous wrote some great stuff - I will never forget 'The Twa Corbies', first read it in college -
The Twa Corbies by Anon

As I was walking all alane,
I heard twa corbies making a maen:
The tane unto the t'ither did say,
"Whaur shall we gang and dine the day?"

"O doun beside yon auld fail dyke,
I wot there lies a new-slain knight;
And naebody kens that he lies there
But his hawk, his hound, and his lady fair.

"His hound is to the hunting gane,
His hawk to fetch the wild-fowl hame,
His lady's ta'en another mate,
Sae we may mak' our dinner sweet.

O we'll sit on his white hause bane,
And I'll pyke out his bonny blue e'en;
Wi' ae lock o' his gowden hair
We'll theek our nest when it blaws bare.

"Mony a ane for him makes maen,
But nane shall ken whaur he is gane.
Over his banes when they are bare,
The wind shall blaw for evermair."

Good luck figuring that one out.



This also by Anon. Ymous, many versions -

"Fierce is the wind tonight,
it ploughs up the white hairs of the sea.
I have no fear that the Viking hosts
will come over the water to me."

I think of the wind as medicine, and the Vikings are cancer, at least to the Irishman that wrote this. Right now my seas are frothy and the Vikings cannot get to me.

My point is, regarding all of you with commenting shyness, if the words are in there and dying to get out, let them out, be Anon. Ymous.

Donald and I were trying to figure out how I could signal him from the 'other' side, if I crossed over soon. I asked him what he wanted as a sign, but we haven't figured out what is possible. I think I will have to figure that out from the other side. Can I light a campfire? Make a bear talk or fart or giggle? Appear in a dream? That is the one I am counting on, but how will he know that I created the dream? I will have to wear something in the dream that he has never seen.

Or, I could do this to all of you, if possible, get in all your dreams, and when you talk to each other you will say 'I had this weird dream where Fiore was wearing a ________,' and the other person will say 'Yes, and also he was wearing those ridiculous ________.' Then you will know I am on the other side. Whatever should I wear? A kilt and tam? A lionskin and codpiece? Dredlocks and a Speedo?

My sister and her husband are here in SLO with us, having a little vacation. They will go to Yosemite on Monday and I will go to Stanford to be fitted for Fractional Total Body Irradiation. A day trip and right back to SLO, then back to Stanford for the thrilla starting on the 18th, when my army hides behind trees and walls and the stupid enemy comes marching in lines straight across the field. A veritable turkey shoot. They will use outlawed nuclear warfare on me from the 22nd to the 26th, then try chemical warfare, but we will blast them with a cavalry charge on the 30th. When the smoke clears 3 weeks later, we'll see who won.

Too much fun

We are here at the apartment in Mountain View, 15 minutes from Stanford. We arrived yesterday, settled in, and went to various meetings and tests today. Another bone marrow biopsy, an echocardiogram, and a pulmonary test. It seemed funny that they gave me a pulmonary function test today, after Donald W. gave me the Donald W. pulmonary 8000 foot altitude straight uphill for 1 1/2 miles followed by 10 miles of downhill in the rain, sleet, hail, snow, and bear shit, all with a 35 pound pack on, whew, test. The Donald W. test took 3 days, and the Stanford test took about 30 minutes. I passed them both, but still have as my greatest regret that first cigarette.

I last blogged in mid-Strawberry Festival. Mike B. and I had a great time, hakunah matata, and Sam Bush was a great closing act. We got up at 6 on Monday, Labor Day, and packed up and left. We didn't get the start we needed, and then I got nabbed for speeding while passing a semi. Sheesh. Lost time hurrying. I pulled out the 'C' card, but the CHP had been immunized against sob stories. Anyway, I made it to SLO at about 1:00 and left at 1:15 for my 1:56 flight and just made it.

I got into the Bozeman Backpacker Hostel at midnight, and Donald and I headed out the next morning. I expected temps of 65 day/45 night. Donald said No no, you need thermal underwear, it will be colder, so we stopped at Target and got some undergarments. Thanks Donald, you were right. The low we had was below 32, as we woke to ice in the cups on day 4, Friday. Tuesday we camped at Pebble Creek campground, very nice, right by the creek. Wed. we headed for the trailhead, hitching a ride with 2 older women that were seasoned backcountry pros and took pity on us standing in the rain with our packs. All the truck-driving tough guys were scared of us.

And rightly so. Donald came down with some strange double vision thing before I arrived, but decided to tough it out as there was nothing to be done. Maybe viral. So he was wearing an eye patch. I hadn't shaved in a while and looked pretty scruffy. The tough guy truck drivers knew they were out of their league so avoided us.

By the time I hiked the first 1 1/2 miles uphill, I was gassed, gasping for breath, and Donald was singing Broadway show tunes. The rest of the hike was downhill, so I had that to look forward to. Our first night campsite was only another mile, and was awesome, looking out on a prairie sloping down from 9000'. The only animals that didn't get the memo that we were in the hood were 2 wolves that went walking by about 100 yards away. The weatherman was a disappointment also, raining, sleeting, hailing, and finally snowing on us.

We compounded things by losing the trail (the trail simply stopped) on Thurs., forcing us to tromp an extra couple of miles to find it, and tromping up there meant through streams and high brush. I was soaked, Donald had raingear. I built a drying fire at the next campsite and spent 5 hours drying everything, and it was all wet by 9 the next morning. We hiked out of there on Friday, and with great luck found the last remaining cabin in Yellowstone an hour and a half south. It continued to rain, so we were glad we abandoned ship.

Yellowstone was great in spite of the weather and the wildlife disappearing. We asked around and were told that yes, the animals had hunkered down. Driving around on Friday and Saturday we finally saw some wildlife. There were bison everywhere - fields, roads, parks, campgrounds, cabins, everywhere. We saw some pronghorn antelope, blacktail deer, an eagle, and 2 black bears. We did lose some of the sense of the majesty of the mountains all around us because of the low clouds most of the time, so that is a good reason to go back.

We knocked around the thermals at Mammoth Hot Springs and at Norris Geyser area. What a bizarre planet! Make sure you go to this park at least once in your life, and give yourself at least a couple of weeks. And thanks Donald for putting off some of your patients and doing this trip with me, and getting all the gear we need, and generally being a great person, and thanks Merle for letting him take the time, and thanks Dana for letting me get away from it all for a couple of weeks. I will have some great pictures to post once Donald sends them to me.

So now I have cleared the slate of all the fun I could muster, and that was great for stepping away from thoughts of the impending Boo Qwilla Thrilla (thanks Mac). That thrilla is just about here, and I am marching into battle, but not without trepidation and fear. I have marshalled my forces, and I have all of you behind me pushing me forward and giving me strength. Like any good warrior I can see the possibility of death in battle, but there is no choice and it must be done. Hooah.