Fiddling away the hours

Bill, I knew you'd come through. Joe's Mortuary, You napalm 'em we embalm 'em. I think a lot of kids are morbid because they are just coming into some reality about death.

I wish I could fiddle. Watching all this music at Strawberry makes the unskilled of us wish we had talent or ambition, not sure what it takes. We are surrounded by musicians, and they are all jamming all the time, except from about 4 am to 8 am. I went to sleep at 11 last night with about 30 people having a jam session about 50 feet away. They influenced my dreams in strange ways that I don't recall except to say they were strange. They were real good too.

Mike B. and I are in this weird isolated world where all your values have been rearranged. Ice is big (in the 90s), and lounging by the lake or in the lake, and finding a shady spot for listening to the music. Dirt and hygiene seem less important; personal space also. This is a lot like Live Oak, upgraded by the lake you can swim in, a big plus. There are cabins here that can be rented, so if you wanted to go upscale it can be done. More vendors, a bigger meadow, more camping, more people, more ants. That's the American way - bigger, better, more.

I am trying to learn from Mike and adapt, but I find my own OCD clashes with Mike's anal retentive hippieness. I needed - NEEDED - to move this rock that I thought was messing with me, but Mike told me that rock was perfect right where it was, it had been there the 30 times he had camped there. I left it. I'm trying to fit in, and my superhero pants help, and my Zerbe derby too.

No cell phones in here unless I hike 2 miles up the hill to the top, and then it is sketchy. Right now I am at the Evergreen Lodge, about a mile outside of camp. There is a nice cool cabin/great room with wifi access and public phones, quiet now but packed later, and I am checking email and doing this update before it gets too hot. By the time I bike back to camp, I will be sweating, and I will switch to swim trunks and go cool off in the lake.

Mike and I had to work Wed. night pre-banding people that were in overnight pullout areas where they could wait the night, mostly RVs and trailers. We were dropped off far from Camp Mather at Camp Bob around 5:30 pm, and given until 10:00 to get it done. There were twenty people there maybe. We finished in an hour. The third worker, Ed, was a mandolin player, and he found some more players with a spare mandolin, and they jammed to entertain everyone in little Camp Bob for a while.

Around 8pm we decided to walk the mile to the Evergreen Lodge (where I am now) and check it out. The place was jumping and was just wrapping up the Wed. all-you-can-eat BBQ, $15. We walked in and quickly ascertained that we were kings and this free feast had been laid before us, at least what was left. So we dug right in, had some steak, burgers, fruit and ice cream. We walked back to Camp Bob sated, Ed was still there jamming, and ten minutes later our ride showed up and took us back to Camp Mather. Tough night.

Thurs. morning we started work at 5:30 am, banding all the people in line to get in. We were done in 4 hours, and that was the work we had to do for our tickets. Beauch has been doing this so long he gets the plum shifts, done before the music starts. All the workers I worked with all had the anal retentive hippieness thing going on, which I find disconcerting because I never know what they will retentive about. They were anal about how to band people, which car was next, who checked the ticket, who put the sticker on the car, kissing up to the boss, and hurrying up. It was like a real job.

The radio just told me it is time to go; the music is starting, and I may put on a rastafarian wig and go wild, be the next spinning man or Fabio, I could be basketball white belly rasta wig guy, or something. Peace out, love the dirt.

Don't PICC on me

I just want to post a short update, as it is 6am and I have to go get a lumbar puncture (LP=spinal tap) with some methotrexate injected into the spine, at 7am. That means I get to the hospital at 7 to prep (put on a gown, take vitals, lie about fasting) for a procedure at 8, they bring me in at 9, and I am out by 11. If all goes well. I had one of these last Friday, and the first puncture was a dry well (!!%^#%$!!), so they did a second. They couldn't find any liquid on the second tap, but on another doc's advice they went ahead and injected the juju juice.

After pressuring the doctor's since about 8/1 on what the chemo routine would be after I get out, and really turning up the pressure after we found we had a donor match, I finally got my answer last Friday evening. I have to have 3 LPs with methotrexate, and I can get them any time in the next 3 weeks. That is it. So this PICC line that has been keeping me out of the water and off the golf course was not needed, not since 8/7. It is coming out today, Yippee Aye Oh Tie Ay #$*&)ª$% (yaotamf).

That news also allowed me to reschedule Yellowstone and move it up a day, since I moved the 9/2 LP to today. All I have to do now is go get this LP today and another on 9/12, pack for Strawberry Festival and for Yellowstone today, go to Strawberry MF tomorrow, come back next Monday by noon, shower and switch luggage packs and get on a plane at 2 pm for Bozeman. Donald will then test my will in the backcountry for 4 days, and I return on the 6th. This should be a great buildup to the Thrilla in Manila, the Rumble in the Jungle, a Slap and a Crap, a Poke and a Tickle, Spaghetti on the Wall, the Call to the Dinosaurs, Slow me then Glow me, I'm on Fire But I Don't Burn, Thrill me Spill me Chill me just don't Kill me, Get Away From My Ears You Psycho, ?????. Help me out here, I am trying to name the chemo/radiation/recovery fight coming up.

I remember at some point in our youth we made up slogans for mortuaries - You Kill 'em We Chill 'em, You Slay 'em We Lay 'em, Billy and Pat, be my memory here, I know we had a lot of these. Don't know why I bring that up, I must be feeling morbid heading for another LP.

So after Friday's double LP, we had a Team-in-Training training session on Saturday am, a mere 6 miles. Like the fool I am, I went, did the 6, and have been suffering with sciatica since. Silly. During an LP, which they are doing under fluoroscopy (xray), they can see the needle and the spine, but not the nerves, so they bang the sciatic nerves occasionally. Hooah. Smile and move on. Off I go, it is time.

This is me in 2002 with my niece Jennie standing behind me, flipping her hair onto my head. More new hair to come.

Flash update - it is 6 pm, and I am packing up for the two trips. I called it on the morning schedule, I got there at 7 am, they got me on the table at 9, Doctor hurt me as much as he could in 45 minutes but had a good LP, I laid on my back the required time and was out at 11:15. Went into my docs and had the PICC line removed - I can swim, golf, surf!

The schedule rules

The beach here was part of a gift of land in honor of Julia Feiffer, and nobody can go on this beach, ever, as part of this grant, so that it remains pristine.

The calendar is starting to solidify and I am packing it with as much fun as I think they will let me have. My scheduling nurse met with us last Thursday, then scheduled herself on vacation starting last Friday, so I had to track down her substitute. She was very helpful and worked out a schedule, and sent it to me at 3:30 am yesterday. Those nurse shifts are crazy. It looks like this right now:

Today - meet with my local doc; PICC line out?

8/26-9/1 Strawberry Music Festival with Beauch, near Yosemite

9/2 Fly to Bozeman, go to Yellowstone with Donald

9/6 Fly to SLO

9/8 To Stanford for testing, move into apartment

9/9 Lisa and Manuel fly in; further testing for me

9/10 Testing for Lisa, then we all go back to SLO

9/11-9/17 SLO day trips w/Lisa and Manuel

9/18 I go to Stanford for tests and classes

9/19 Central catheter (port) put in

9/22 Start getting slammed - chemo and total body irradiation

9/23-26 Outpatient TBI, walk around glowing

9/25-29 Lisa goes in for Neupogen shots

9/27 Get in hospital E unit before I fall down

9/29 Cell collection (Apheresis) from Lisa

9/30 Maybe more cell collection; Transplant day (Day Zero)

9/1-9/?? Dance with the devil. Love my new bone marrow. Acceptance. Build enough new WBCs and Reds and platelets to get out of hospital.

10/3 Lisa and Manuel get to go home, having suffered through an odd vacation of sorts.

10/? Hoping for 10/15, move back into apartment in Palo Alto and start outpatient treatments

12/31? Go home partly cured

1/1/09- 7/1/09? Weak but improving, then fully cured

Mike jamming with Dennis and ? up in Big Sur

Judy and I are honored teammates of the Team-in-Training team, but as warriors we try to do the training with the team, keep them inspired. I use her hair salon. Here we are at the end of the 8 miles on 8/9, in Morro Bay.

Dana and I did 8 of the 9 mile training on Saturday 8/16. We got there late and cut the first mile. It wasn't bad, better shoes helped me. Now that I know I cannot be at the Nike Marathon in mid-October, I have slowed my training. I need to add some weight work and speed work to avoid Tyson's most damaging blows, especially the orange sack.

Dana is working hard at getting her classroom set up; school starts Monday for teachers, Tuesday for kids. Mike and I spent 2 hours clothes shopping yesterday, my upper limit and his too. Dana nixed almost everything we bought. Sheesh. I am mostly working on getting schedules together and getting other things nailed down. I replaced the hot water heater finally, rolled the dice for ten years and carpeted the garage to boot. It seems while I was away the boys have divvied out my key ring to various places which remain unknown; parts of my car are missing also, so I am trying to relocate things and prep for another absence.

Auntie Stacy and uncle Barry have offered to take Mike in for the school year, which is great since they live near the high school and will offer some stability and guidance that Mike isn't getting from John. Woody may stay at Auntie Lia's right down the street, so Mike could bring Woody to Stacy's for sleeping, a dog security blanket so to speak.

I continue to feel fine. It would be great to get this PICC line out today, and I think they can do it since I will be getting a port or central catheter on 9/19. The docs better have some chemo schedule for me at today's appointment. I hope all the crazy planning I have done, to try to enjoy the world before I go into Abu Stanford Ghraib, doesn't blow up in my face today. The big trick is getting 6 lumbar punctures with intrathecal methotrexate between now and 9/22. That means a spinal tap, love those, and injection into the spine, to get the little bastard spine hiding leukemia cells. I have to figure out the schedule for these.

I cannot get off this 4:30 am wake-up time. I stayed up until 11:30 watching the Olympics last night, but woke up at 4:30 anyway. I need a nap already. If you happen to have an apartment in Palo Alto that is empty for the next 4 months, let me know. I might have to go up this weekend and nail this down.

Out of the woods

Let me start with the good news - my two sisters Lisa and Leslie (identical twins) are both matches and (in hospital CYA-speak) potential donor candidates! Lisa will probably be the donor, as Leslie has kids and so has antigens from when those kids were in the womb that could cause trouble. Lisa will be a great donor, and is looking forward to a little CA vacation time. We met with the attending doc and one of the fellows on Tuesday and got this news, and we are jazzed! We then went to Feiffer Burns State Park and went camping.

We had to return to Stanford on Thursday at 8:45 am, so going camping saved us a couple of hours of driving, and we got to see Mikey. He spends a week in Big Sur (Feiffer Burns) camping with the Sheffers and a bunch of their friends, and we have joined them for some time the past two years. We had a great time, ending with a great guitar/ukulele/harmonica sing-along music session. About 35 people showed up, it was cool.

Our reverie was shattered at 5 am this morning, when we had to get up, pack up, and head to Stanford for the 8:45 appointment. I made the huge mistake of not making a coffee for the road, and complained long and loud. We got to Stanford at 8 and had breakfast and coffee. We then met with the Transplant Doc, and our reverie was completely shattered in begger ways, as he was the harbinger of doom. Not his personality, but his information.

He told us all about what to expect, and I am not getting ready for a boxing match with Mike Tyson. I am getting ready for a back alley fight with Mike Tyson, and he has brass knuckles, a blowtorch, a sack of oranges, and a potted cactus. I have a nod, a wink, and a smile. What that means is ten times the dose of chemos I just went through, plus total body irradiation (TBI), with special attention to the testicles where the leukemia bastards like to hang and watch the action.

I've been burned, shot at, crashed, chemoed up, beaten up, and cracked up, and made it this far. I am healthy, with a good attitude. I like my chances.

We did not get the definitive schedule of events, but are working on it. The doctor is just coming off vacation, and his scheduling nurse is just heading for vacation, but that shouldn't matter. Where before the zero day was the day you were diagnosed, now it is the day I receive the transpant, the new Day Zero. So the schedule is going to go something like this -
Day -20 Around end of August - Test the donor further - bacterial and viral condition, physical condition. Lisa probably has to fly out for this.
Day -14 Around mid-Sept, start the chemo slam and TBI as an outpatient.
Day -7 I crawl into the hospital, to Unit E1, and I should be really sick. No white blood cells (and don't send me any yet), no reds, no platelets. They are trying to kill my bone marrow and every leukemia cell they can find.
Day -5 The donor starts getting Nupogen to promote blood products.
Day Zero Perform the apheresis where they remove the hematopoietic cells (stuff) from the donor blood and transplant it into my blood.

Day Zero-Day 21 or so Now things really get cooking. The new marrow has to accept my body as a host, since the new marrow is the immune system. Some degree of Host versus Graft (HVG) disease is common. This manifests in many ways, all bad. For instance, my skin may be rejected and I could end up in the burn unit! Or, my new marrow could decide that my liver looks foreign and shuts it down. I will be in the hospital and they will balance immune suppression with damage to my other parts, using drugs to keep me alive. I may be in morphine madness for 2 weeks. I get to leave the hospital when the new marrow has been accepted enough that they do not need to suppress the immune response, and my blood cell counts recover. One out of four die in this period, but that includes a lot of overall unhealthy people that cannot withstand the treatment.

After I leave the hospital I have to live near the hospital for 60-100+ days, really until they have host v. graft controlled and I am moderately healthy. Dana will have to stay with me. I then go home and I am weak and useless for another 6 months or more, but the good news is I can do dishes.

I have to say though, to this point I was thinking of future events in terms of past events, very human of me. I had minimized the severity and risks of the coming treatments and the doctor brought me back. The treatments can be brutal, and I am going to have to muster all my courage and will to smile through it again. The odds are daunting, so I have to keep in mind that I have changed the odds before and I will here too.

A couple of notes - Thanks for your thoughts and prayers, even from the Republicans down in the OC! I said to someone the other day, the big C doesn't care about religion or politics.

I walked the eight miles with the Team-in-Training team last Saturday, because it helped in deluding me that I was not about to enter the River Styx, pass through the gates, just to dance with the devil and spit in his eye. I got a nice calf cramp at mile 7 and gatoraded through it. Hey Martha, Mike told me how that photo went all the way to Maine and came back, cool, I took that photo. And as for Ooga men, I could use them all, and their sisters too. Check out the Ooga men at http://marthamillerart.blogspot.com/2008/08/power-of-visualization.html

Home sweet home

Home sweet home. We have made ourselves a pretty comfortable nest here. We got home yesterday around 7pm, but dang if Mikey hadn't already left for LA with his friends, taking the Surfliner down to see Wicked the Musical (the book by Maguire was very cool). They are staying with one of the kid's aunts, and will come home tomorrow.

Since we had no idea where Mikey was, and John didn't know (!?), Dana spent the night wringing her hands and actually had a worse night's sleep than I did. Social mores kept her from calling one of the other kids' moms to see where Mike was, so when I leapt out of the bed with a quads cramp at 4 in the morning and then peed, she woke freaky and dark and shouted 'Is Mike here?' and I yelled 'It's just me and I am peeing!' We went back to sleep.

Mom and children from The Gates of Hell

Tough night, and tough day yesterday, you have to be tough. I wanted the day that we had, with the last of chemo for induction phase, a bone marrow biopsy, first day in 3 weeks with no prednisone (no taper, cold turkey), and a drive home, and I got it. I woke early Thursday in my new shared room, and I grabbed the laptop and a coffee and headed for the waiting room where I wouldn't disturb Brian. I started blogging and wasting time until breakfast. After breakfast, the pharmacist doctor from our team came by, and that is when I found out I was going cold turkey off the prednisone.

She said I could expect to crash sometime in the day, and just feel rundown and tired through Friday or Saturday. She wanted to know if I wanted her to say anything to the attending doctor towards my early Thursday release, but I told her that I had already lobbied it and should probably back off. My guess is the decision had been made when my blood work showed good, which I assumed it had. I asked the pharm doc to add some magic juice to my chemo, some vincristine and some PEG-Asparaginase.

I got my nurse to get going on the chemo as soon as it was cooked up. Vincristine is a 2mg IV push, takes 2 minutes. PEG is 2 intramuscular shots that I like in the latissimus. This was the same as day 5's shots, and again the nurse warned me that this shot really hurt, hold on, and again I had to tell them compared to the dentist's roof-of-mouth shot, this was nothing. And again, I was right, it hurts more with a dull ache for the next day than the initial shot.

People do not know how to take pain like shots and so they get freaked in anticipation, but it is easy. I either get very interested and watch intently, and record all sensory intake like a scientist, or I go away someplace deep that takes some concentration, some place I know well and can conjure in my mind for that moment.

My bone marrow biopsy was scheduled for about 1pm, so of course right after the doc came by to see we were going to get going on it in a few minutes when he found th technician he needed, I had to go find a bathroom. I couldn't go in the room's bathroom with Brian's wife sitiing ten feet away. I went out to a visitor bathroom and had a high anxiety gas attack, trying not to miss the doc's return and possible reschedule and loss of early freedom, but I had to weigh the possibility of crapping myself when the doc started pushing on my bones to get that marrow coring he needs.

It all worked out. One of the interns was with the doc, and the technician that looks at the aspirate and the coring and makes sure they are good samples. We gathered in my room. Brian and his wife left in horror - he had said he screamed and cried like a baby when he got BMBs. He had a lot of nerve. The docs proceeded, starting by feeling around for the spot on the iliac crest they go in.

They mark the spot with an 'X'; I am getting tattoos on those spots to direct future docs. I asked the intern if this was his first BMB, and he agreed he was a virgin. Cool. They start by injecting lidocaine painkiller in the spot, and then more and deeper, pushing and injecting, then pushing and injecting. It is not a sharp but rather a deep pain, one that should produce a nice groan. This is the most painful part of the procedure.

I realized I had spent too much time watching surfers from the parking lot at the Rock, as opposed to actually surfing myself, when my perspective was misaligned. I was supposed to be paddling out at the outlet next to Morro Rock, but I was seeing it from the parking lot. I had to fix this mental misfire, and reoriented, and now I was on my board and the current was taking me out to the lineup. The waves were nice, not too big, and I needed one to ride the pain waves they were going to be rippling through me. They got the lidocaine in deep and I caught a nice left, and as he really shoved the last of it in I accelerated on the wave, ripping it up and down, surfing much better than I really do. At least I had the visuals fixed.

We waited for the lidocaine to settle in and then went to work. This part doesn't really hurt until the last. They are going to get 2 things; first some aspirate (juicy), and then they go deeper and get a coring, a little slice of bone marrow. The intern pushes the aspirate needle, and since he is being coached by the head doc, I hear all the instruction, and they want me to keep communicating what I am feeling, which is pressure but not pain. Once they anchor that needle on the spot they want the intern gives it a good shove, and you can feel it pop through the bone into the marrow.

He gets his aspirate, pulls it out, the technician says it looks great, and we move on. This part is much trickier as they have to get the coring into the needle and then get it to break off without losing any. The intern goes back into the hole and really starts pushing. A couple more pops through bone, and the trick is to not get 'China Syndrome', where you've gone too far and through. Just when it starts to hurt pretty deep, he is far enough. Now he has to twist the needle around in a circle twenty times, then wiggle it back and forth to break it, and then yank it out. He tells me get ready, so I paddle out, and he pops it as I go left again. Another good wave, shoulder high and ripping down the line.

However, tragedy, the coring broke. The intern asks if we are still friends, and I tell him I love him, do me again daddyo. So he goes in close by, which is why we used a load of lidocaine in the first place. This time he is a little more confident and gets what he needs. I am of course urging him - when this is done, we are gone. They clean up the blood and bone that flew around, bandage me up, get my discharge papers after I lie for 1/2 hour, and we boogaloo, 3pm, and just miss traffic.

Dana drives and when we switch in Salinas, the lidocaine is wearing off, the prednisone is wearing off, and suddenly I feel like I ran a marathon. Everything hurts. By the time we get home I am about 75 years old, and by bedtime I am 90. I wake up repeatedly during the night with calf, feet and hamstring cramps, and generally drive Dana even wackier than she already is over Mike. Dana's sisters have prepared for my return with a 'Welcome Home' poster, starring me.

We noticed these pimples on Boo-Qwilla's ass. And here are two disco ducks on tour.

It is now Friday night, and I am still out of gas, but recovering. Tomorrow the Team-in-Training training session is 8 miles; I may just cheer them on, I may walk what I can, we'll see how I feel tomorrow.

Epic day

Here is Day 21 (Wednesday) photo, things are looking rattier. Note the look of quiet planning, the t-shirt askance just like Chief Broom, the wry smile. I am pondering whether I'll blow my PICC line throwing a dialysis unit through the window and making my escape. Tonight.


Thursday morning - Woke up at 3:45 and had to pee, so I went into the bathroom and started the urinal they think they are measuring my output with. Of course I have to guesstimate the 10 pees I took in the woods, bushes, and bathrooms of Stanford for them, oh about 3000 ml from the still-fearful-of-red-death bladder. So I am standing there in my undies peeing into the urinal when it dawns on me that I am getting a shower on my legs and feet, as the thing is cracked and leaking all over me and the floor. Sheesh. I clean myself up, and get maintenance to clean the rest of the mess.

I hope I didn't disturb Brian in the other bed. I get a coffee, my blood drawn for testing, grab my backpack and head to the waiting room, where I type this. And that Brian guy, he was sharing the double next door, but his ex-roomie is going downhill, neutropenic and needs the single room, and I have the only one, so we swapped rooms and that is fine if they need it, and I hope I haven't bothered Brian with a urine-soaked dance party. Which by the way, you can purchase here http://nerdapproved.com/audio/toilet-tunes-a-urine-soaked-dance-party/.

There are days that just drag by, and then there are days that you struggle to describe in a word - epic, fantastic, emotional, painful, joyful, searing, long. So let me tell you about what we hope was the penultimate day, the last day of wandering aimlessly, before today's final chemo and a bone marrow biopsy, and afternoon trip home. A day early because they know I will be fine with vincristine and PEG and they do not need to see the biopsy results for me to leave Friday as planned. And because I have mustered every ounce of politicking with nurses and doctors, goodwill, karma, comedy, attittude, healthiness, gladhanding, gifting, overpowering logic, oddsmaking, pleading, backroom dealmaking, bribery, extortion, shakedown ID theft, and almost downright demanding that now that I have lost the Zen palace I created, the room that put the fun in feng shui, I should go home a day early.


Wednesday started well; I woke at 5, a good night sleep. Dana was dozing peacefully, so I got a coffee and the nurse to draw my blood, ate a yogurt, then grabbed my book and camera and headed out. I found a nice reading spot next to a brass fountain in a little bamboo garden, and read 'Bookseller of Kabul' for a while. I strolled out to the duck fountains, where a maintenance guy was cleaning the pond of bottom duck scum. I got the whole scoop from him on the floating alligator head (yes, meant to scare away the ducks, not working) and the politics of duck control and animal lovers vs. brown fountain water. When I returned at 7, Dana was up.





Breakfast soon arrived, and I had ordered everything. Bacon, scrambled eggs, potatoes, and cinnamon blueberry pancakes for starters, a blueberry scone, some oatmeal, an apple juice and a tea. You'd think I was a lumberjack. All the usual for later - bagel, cream cheese, yogurt and a gatorade. The hand cramping is always lingering, threatening, so if I drop the phone while I am talking to you, it's cramps and I need a gatorade and to stop using that hand. I eat, and eat, then eat.





My head is really getting itchy, and I find myself pulling out chunks of hair, which makes it even itchier. Dana and I decide we don't want to take the hair removal mess home, so out come the buzzers. Get your eyebrow/lowbrow eyebrows ready. Check the video, I hope it works.







And here is the net result:




Do-Rag, KMart, $1.99. One badass mofo on your side, priceless.

I do have a leukemia injury, and I was pretty hesitant to report it to my nurse. By noon on Monday my foot started hurting, and it was because I had this blister on my #4 toe. I was wearing the last pair of socks and they weren't good, and I did like 15,000 paces on the pedometer by noon, so I had to go back and self-doctor at noon. I didn't want to report this injury because, for one, I was afraid to be curtailed or worse sent to X-Ray or put on an antibiotic IV drip, and second, I was busted. So I cleaned it and put a bandage around it and walked all afternoon. That night I owned up to the nurse, who said to clean it and put a bandage around it, and by the way, how did I get a blister like that, how much was I walking, and I blamed the socks, threw them right under the bus.

Picture of blister deleted at Dana's request. She said nobody wanted to see my picture of a blister.

Of course that blister goes in the Fiore report, so when Dr. Gala comes in Tuesday morning for Dr. team rounds pre-check check, he asks to see the blister, asks the same questions, gets the same stories, grins, ha ha, clean it and put a bandage on it, no need for antibiotics.

Now I also ask him to check this thing I discovered a couple mornings earlier, this alien in my gut. When they shaved my belly for the gallbladder surgery, they left an ugly mess, 2/3rds of the lower half shaved, asymmetrical, and it is not growing back very fast. I used to work the abs a lot, about 25 years ago I think, but all the years riding a desk combined with the steroid swell and massive eating has left an ugly mess. So I have been pondering on that when I have to use a mirror, and thought I might try to get back some core tone with some crunches thrown into the daily yoga/exercise.

I am doing crunches and I mistakenly look at my stomach, and instead of a six-pack I have a large bologna from a Spanish bar stuffed from about my navel to my sternum, like the alien is in there forming up and getting ready to charge out. Criminy! What is that? Every crunch, up it pops, down it goes, the anti-muscle. I touch it, and it is soft, like an air bladder or a wineskin.

I ask Dr. Gala about this, and he says show me, and when I do he says it is either some type of hernia or restis somethingorother, meaning your stomach is so weak that that sausage-looking tube pops up when you do a crunch. He chuckles. Of course he is about 128 pounds of maybe Indian health, all wire and brains. We'll keep an eye on it, and try to eat that old sausage slowly; it has been hanging in a tapateria in Bilbao, next to the leg of jamon serrano, for twenty years, and it won't go fast. No pictures please.

Roger Robbins calls, and he is in the hood, so let's go, he has a day here from Florida. He comes over, the Dr. team rounds check-check team shows up and checks me, I am da man AGAIN, who can stop me, I am the get-out-da-wayin', backboard swayin', game-delaying chocolate thunder. I am Darryl Dawkins? No, wait, I am just DA MAN.





Roger, Dana and I go out and stroll. We visit a lot of the campus, the church, the tower, Boo-Qwilla, and we have a great visit. One thing about being here is many friends that are scattered come to this area for business on a regular basis, so we can catch up, and it is great to hear how the Robbins family is doing.
Dana and me in the Hoover Tower.


I have on some very discreet superhero pants, and look like a guido with a bad understanding of disco. Click to closeup, Ma.

OK, flash update, it is 10:30, the doctor team just left after telling me I was leaving today! Bone marrow biopsy at 11:30, chemo at 12:30, road at 1:30. And they are not tapering me off the prednisone, instead I crash (meaning Dana is driving and I am sleeping) in the Volvo on the way home. No prednisone this morning, it is day 22, the 21 days of screaming streaming are done.

OK, back to yesterday's walk. We went to lunch at this nice little Mexican bistro, very close by in Beckman, big burritos. There were no open tables so we sat with two guys, who at first seemed reticent (superhero pants reaction) to talk, but then one man started talking about how he had just finished a one-man sailing race to Hawaii, 17 days. He described this great adventure, and since I have always wanted to sail, he had my attention. Dana was watching me and getting nervous, something to do with the ten-year commitment not to mention the money. She may be right.

As we are walking back to the hospital, one of my first doctor team doctors (I am on team 2 now) comes walking down the path, sees the superhero pants, and says 'John, how are you?', and I am trying to hide, looking totally busted. She was fine with it, and knows I can take a hike no problem. It was funny to be finally caught out of bounds though.

Roger left and Dana and I had to scramble to get to a writing class that was going from 2-5 at Stanford Cancer Center. We get there, and this class is led by Sharon Bray of Wellspring Writers and it is 15 women and me. Sharon directs us in some writing exercises. The first was that cancer is an entitiy facing you, and it speaks to you, and then you speak to it. The next concept was writing autobiographically by writing short pieces on what you remember, and what you forget, and in another exercise you could either write a 5 paragraph autobiography, or write slices of your life in 6 word sentences. Now I have to tell you this all sounds simple, but there was more pain and suffering and misery and hope and sobbing, and 15 women pouring out their stories and trying to make me cry. And there I am dredging up all my fears and emotions, jangled out on steroids, hearing about lost loves and hopes, wracked bodies, betrayal, shattered lives, up close and personal. Scotts tissue is rich on cancer. These were 3 of the toughest hours I have been through, maybe ever. The only 6 word slice I will share now is 'Never should haved smoked that cigarette.'

Feeling wrung out, Dana and I head back to F Ground. We get in the Zen palace, and a nurse that I am not very familiar with comes in and says 'You have to move.' It turns out the patient in the double next door is getting neutropenic and needs the single room. Now I have been totally lucky to have kept this room while not really needing a single for health reasons. I know that some nurses have argued to keep me in the single, pointing out that I utilize the space to create a healing and active environment, and that has helped. I am glad for that luck, but at that moment they were telling me to move I was feeling pretty put out.

I sucked it up, we packed up the Zen room a couple of days early, and I shared a double room with Brian last night, no problem. Dana found a bad hotel room nearby, and I am sitting here waiting for my chemo and now a 1:30 bone marrow biopsy. We should be in SLO by 7 pm.



The view from the Zen room F030A

Genes walking

Day 14 of induction, been here for 3 weeks. Looking pretty ragged, the hair is starting to depart. It doesn't lie flat but is actually trying to leap off my head. Eyebrows look like fishing line snag you find at the harbor. I had a good night sleep in spite of nurse torture. Dana will bring the trimmers today and I will be chrome by evening.

I walked all over yesterday, spent about 5 hours walking around, and when I got back in the afternoon it was time for a shower. However, the nurse came right in and hooked me up to potassium, which I keep coming up short of in spite of my daily banana and gatorade. Pretty common for chemo patients to burn through potassium. They were giving me these 2 horse potassium pills, and I must say they are the most difficult thing to swallow (I have swallowed 37 pills at once, a fistful) as they are dissolving before they hit the throat. So I end up hooked up to the IV pole for 5 hours getting slow-drip potassium. Jimmy S. comes by and we go get a decaf and chat.

I finish the No 1 Ladies Detective Agency and fall asleep at 11:30 after the long day of walking, and the night nurse decides that now they have to take vital signs every 4 hours instead of every eight, so she comes in and wakes me up at 1:00 to take vitals, all apologetic. I kindly give her hell, in a very gentle 1500ml of prednisone still stuck in me and more coming daily I need sleep more than food and my freaking vitals are better than yours go away hurry up are we done kind of way and if you are following my thoughts and the way I am sleeping through the vitals you can tell I think you didn't think this one through so hurry up. I am asleep again before she leaves.

I wake up at 5:00, so I got over 5 hours sleep, cool. My morning jangle is a little tuned down, the constant low-grade steroid jangle headache is OK. I am listening to Eric Clapton do Blues Before Sunrise and trying to research what they are going to stick in me in phase 2, I don't remember.

Rant warning - I have been thinking about the Earth lately, watching our candidates dance. If the American people are stupid enough to think that this election should be swayed by drilling for offshore oil that won't give us shit for a BushEon (eight years of horrible devastation), we deserve it. The Republicans showed their thinking on energy independence in the 80s when Reagan scrapped the goals foe energy independence agreed to under Carter, and Bushiot (W) scrapped them again after his Dad reinstated those goals. Don't be swayed by this knee-jerk reaction to gas prices. We have to figure out how we are all going to survive on this planet, and I am starting to stress on the general stupidity of everyone when they react to McCainiot plans to drill now and save the day. This tied him in the polls? Sounds like Attack Iraq. Imbeciles. Love your country, fear your government.

This is the gene pool I need to find. Too bad we can't just loop into those spots in time when we were so healthy and didn't know it, and snag a dose of that juju.

Dad and Leslie looking fabulous.

I have been missing my Dad lately, been wanting to sit and talk with him, just feel his presence for a while. There are certain photos that we have that just make you want to reach out and hug that person from that moment in time - I have a number of pictures of my boys like that, but this one of my Dad at 8 always makes me feel like that, like I wish I could go back in time and be his Dad and make things happier for him. Mom looks fabulous too.
The Fiore kids; Frank and Mikey are carrying some shared genes.

Here is my new jade window creation. I have been experimenting with gluing jade to wire and it works, so at 4:30 in the morning a couple days ago I started trying to get it all to hang somehow, and this works but gives me that dynamic feel, as I wait for some or all of it to come crashing down. I need clear glue too, this stuff is Gorilla Glue foamy.

I am starting to lose it a little; I feel very undirected, like I am just floating through what is left. Today is the beginning of week 4 here, new record thanks to those extra 3 days at the start. Way more bizarre than last time as I am almost completely healthy except for this annoying leukemia.

I cut back on the carbs in these meals, but I feel like they sewed a basketball in my gut. Steroid swell. I am swollen. When I walk by the atrium windows, they show this pear-shaped guy actually tipping over as he walks down the hall, and he has the general shape of my Dad in his later years, not pretty. I weigh the exact same as the day I arrived, amazing, I feel much bigger. I must have been hungry yesterday when I filled in today's menu request - breakfast was sausage, scrambled eggs and potatoes, an english muffin with jelly, a cup of oatmeal, an apple juice, a coffee and an herbal tea. I am still working on that part at 8am. Saved for tensies is a bagel, cream cheese, and fruit cup, plus a banana and gatorade for walking, and a yogurt for tomorrow 5am. As a sick tube I am working pretty well, pumping a lot of stuff through the system and hoping I flush out any crud in there.

Dana will come today and get me redirected back to the prize fight. We will spend some time figuring out how the next phase will work, and checking out apartments and stuff like that. I plan to take her to better cafes than those in the hospital.

And if you have not been checking the comments on this blog, make sure you check yesterday. I think Mac let his big dog out and that sucker rolled in everything in the blog so far, took some Owlsley Blue, went back home and talked to Mac and then Mac turned it into literature. I am going to be his agent.

Dana here...I just wanted to post this picture of Mike at prom this year. Yep, he and Uncle Frankie do look alike. Heck, they are even wearing the same vest!

(By the way, Nana, if you click on the pictures, it will make them bigger.)

Dawn from the rooftop garden

I woke up at 4:15, 4.5 hrs of sleep, good enough. Got a coffee and got going, goofing about. I decided to try to capture dawn from the rooftop garden, knowing the elevator opening hour is probably more like 7am and the code wouldn't work.

I get over to the LPCH lobby and ask the guard if he will unlock the 4th floor, but he says he won't mess with it, if the code works OK but he won't mess with it. He doesn't know much about it and does not know me. I get in the elevator and gallantly try the code and it does nothing. I try again, nothing. At this moment an EMT team rushes in with an infant in a resuscitator and they need the elevator. I make room and we all go to the third floor.

Since the code won't work, I go back to the lobby and hang around, explaining how the day guards would just override the timer if it was just after 6pm, and it was no big deal. Now it is approaching 6am, and I think dawn must be 6:10 or so, and the guard suddenly relents and walks me over to the elevator, overrides the timer, and away I go to the rooftop garden for dawn. Thanks Joseph.

It is Sunday 9 am on the east coast, so I call Billy M. and ask him if he is on the first tee; they are next up. Good luck Bill.

I made some video of the rooftop garden and tried it here on the blog, but I took it down because it was too shaky. I need to work on my video skills. I finally finished reading The Poisonwood Bible up on the roof, and when I got back to my room at 7:30 breakfast had just arrived.

The docs came in around 10 am and said I am the man again, have a great day. Dr. M got some Marley going on the iPod, we chilled for a moment, smiled a lot, and we are on track for August 8 going home. After they left, I spent the day in various gardens reading and working the Sunday crossword, now almost done. After lunch I walked over to the Stanford University Golf practice/driving range, a big range open to the public.

When we walked by this driving range on Friday, on our way back from the golf course tour, I veered us over past the driving range area. We noticed a large separate practice area, presumably not open to the public since no public was there, the University golf team practice green and range areas. It was perfect and empty, and had a tall fence separating the area from the driving range.

So I took my putter and 3 balls and gatorade, told the nurse I was going to try the third floor carpet, and walked the mile over to this practice area after lunch today, and it was perfect. Practiced my putting for an hour on this giant perfect green, and had it to myself until a coach showed up at the chipping area. He gave me a glance and went about his prep. Perfect afternoon, just for the serenity of it all, and plenty of walking.

This is my room from the entry. Note the shrubbery.

Unabashed Hope

These faces on the Gates of Hell remind me of how people's faces look when they are body-surfing and are just about to go over the falls of a bigger wave - a little apprehensive. I am having a very lazy Saturday, somewhat apprehensive. I am stuck on the IV pole as my hematocrit (red cells) level went low and I am getting 2 units of blood dripped into me, which takes about 5 hours. My WBC dropped too, still healthy, no mask, but ....

The doctors seemed to think it was unusual for there to be any slippage given how well I had recovered, but then they agree my whole blood recovery has been unusual and it may be the neupogen that I am no longer getting. At any rate, I was planning on a relaxed Saturday after a great visit from Mike and Jack, but the doctor's crossed arm/scratching chin/shifting feet meeting made me a little anxious.

Jack and Mike and I went for a lot of walks and explored a lot of the campus, probably too much. I can hear Dana saying, 'That is why your blood is worn out today.' Maybe, but more likely the positive effects of the neupogen are wearing down and I am having a more normal recovery, a little downtime.

This campus is huge. We went to one of the cafes and had a big burger and fries lunch, tested out the no gallbladder method, works fine. Looked at all the architecture and gardens. Since it was Friday afternoon there were fewer people about, but a lot of student orientation groups. It looks like a Stanford education is a deal with the weak dollar!

We found this totem of Boo-Qwilla, who it turns out is a focal point for healing, according to the sign (I hope you can read it).

We even walked over to Stanford Golf Course where Tiger Woods played his college golf. It was about 6pm when we got there, and the marshall was really nice to us, loaded us in a 6 seater cart and gave us a tour of the entire course. I should have taped it!

Now this sign has bothered me since I first came to SUMC in '05, but maybe I am just picky. Who can tell me why I find this sign funny, here at Stanford with all these smart people? Eldra? Mom?

I am going to make this a short post. They gave me benadryl to counter any blood transfusion effects and dang if it isn't making me sleepy. It is time for 2:00sie soup too.