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.
Friday, September 12, 2008
Monday, September 08, 2008
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.
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.
Friday, August 29, 2008
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.
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, $15. We walked in and quickly ascertained that we were kings and this free feast had been laid before us, at least what was left. So we dug right in, had some steak, burgers, fruit and ice cream. We walked back to Camp Bob sated, Ed was still there jamming, and ten minutes later our ride showed up and took us back to Camp Mather. Tough night.
Thurs. morning we started work at 5:30 am, banding all the people in line to get in. We were done in 4 hours, and that was the work we had to do for our tickets. Beauch has been doing this so long he gets the plum shifts, done before the music starts. All the workers I worked with all had the anal retentive hippieness thing going on, which I find disconcerting because I never know what they will retentive about. They were anal about how to band people, which car was next, who checked the ticket, who put the sticker on the car, kissing up to the boss, and hurrying up. It was like a real job.
The radio just told me it is time to go; the music is starting, and I may put on a rastafarian wig and go wild, be the next spinning man or Fabio, I could be basketball white belly rasta wig guy, or something. Peace out, love the dirt.
Monday, August 25, 2008
Don't PICC on me
I just want to post a short update, as it is 6am and I have to go get a lumbar puncture (LP=spinal tap) with some methotrexate injected into the spine, at 7am. That means I get to the hospital at 7 to prep (put on a gown, take vitals, lie about fasting) for a procedure at 8, they bring me in at 9, and I am out by 11. If all goes well. I had one of these last Friday, and the first puncture was a dry well (!!%^#%$!!), 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 #$*&)ยช$% (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.
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 #$*&)ยช$% (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!
Wednesday, August 20, 2008
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.
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.
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.
Thursday, August 14, 2008
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
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
Friday, August 08, 2008
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.
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.
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.
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.
Thursday, August 07, 2008
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
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
Tuesday, August 05, 2008
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.
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.)
Sunday, August 03, 2008
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.
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.
Saturday, August 02, 2008
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!
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?
Thursday, July 31, 2008
Let's Face it
Sometimes I see tourists at Morro Rock in Morro Bay and they actually get out of their car to throw away their fast food wrapper into the gull food dispenser and trash disbursement unit. Occasionally they will be so venturesome as to approach the water and take a picture, usually of a ground squirrel. I like to approach these people and see if I can get them to line up their faces with the Big Face on BirdShit Rock and trust me with their camera. I got George to do it with a friend here. Everyone should do it. I think I got 5 people once. I always wanted to have a big concert event at the Rock, Rock at the Rock, and show surf movies on the Rock. I didn't get it done. I wonder if there are places on this earth that are channels of healing energy. The Salinan and Chumash Indians have been using the Rock in their ceremonies for many years, and I may have found some spots here at Stanford. If you look at this Google Earth shot looking down at The Lucile Packard Children's Hospital, 200' from my room, you can see that the hospital has an open center with terraces and gardens from each floor. There is a fountain in the center of the first floor, and then more gardens off each floor. The shadows in this pic do not help - the first floor garden is half in shade. If you Google Earth these coordinates you can zoom around it better.
These small gardens create little private places where families can go and work with the universal forces they need to help bring them to completion and if not harmony, the power to go on; plants and water fountains help them stay connected to the life forces they are clinging to. And here is my point - That cement walkway that circumnavigates the very top layer of the hospital is the rooftop garden. I read there every day. You can only access it from a certain elevator and with a secret code that never changes and they will give any patient. The elevator closes at about 6pm, so if I go at 5:45 I have my own rooftop garden, sunsets, views, yell at the sky, pound my chest, but most of all I soak in all the hope and healing energy I can that is emanating up through all the floors of that hospital and those gardens below me. At least I can think that.
There are so many people helping us get through this time and space, and we appreciate all that has been offered and done, so much help from our neighbors the Kaspians and the Campbells, watching over the Fiore lads in their susceptible times. It really helps us deal with the stresses of dealing with the medical side.
This is a reunion Dana and I stumbled on, of 20 year Bone Marrow Transplant recipient/donors. It felt so hopeful!
Nick Blozan came to visit yesterday, here he is at Rodin's Gates of Hell, and looking like he just escaped! We had such a different visit than in '05. I think I was pretty sick then, and this time we were trying to figure out how to get 9 holes in on Tiger Woods' college course. The second pic we are at the Arizona Cactus Garden, in front of this giant gnarly cactus that could guard the gates of hell. The Arizona Cactus Garden is also a special healing spot on this earth, with these plants that can thrive on so little and yet offer so much protection.
We walked all around, and went to the California Cafe for an appetizer, had a great time. Nick has been like a brother to me since the day I met him, and was integral in teaching my kids the finer points of machismo cussing, emphasis, and timing. I had a large collection of Championship Softball t-shirts in large part because of Nick's ability to get people to get it done, and not look to see if you were bleeding after you got drilled by a 120mph 'soft'ball in the shin. If I threw a walk, I would hear him at shortstop - 'Would you just pull your head out??'. Love that guy. I posted his kid's pics earlier, so I need a pic of his wife Dyan so you can see how his kids ended up good-looking.
I remember the faces I had, like pictures that hang on the walls of my house, and then I am mildly shocked to find the mirror with today's face. I was organizing photos and getting hung up on the faces and remembering the aspects of joy from some of them. When I was rooted to the center of the universe through Willie Mays' chair in the Bing Dining Room, I felt I was connected to all time, that the universe was made of arteries and veins and synapses, that all these faces we had we still have, somewhere.
I am a great believer in the great cosmic soup, and a great wonderer of who made the soup. I've said before, I cannot fathom the incomprehensible, even using the other 95% of my brain, so instead I give you these faces old and new.
This is my Mom and Dad.
This is my Dad and my sister Lisa looking fabulous.This is me at 24, before steroids.
I am waiting for the chowderhead clan to come visit, they should be here in an hour, and we are cruising campus. The new day nurse tried to lay out how I had to check in every hour, and I went over my rules with her, gave her my cell phone and pointed out how I am healthier than she is except for leukemia pain in the ass, and she was very pleasant and could see I would be no trouble if she couldn't see me. So today we really extend the borders and cruise Stanford Campus, and myabe actually find the golf course for some putting. Wish me luck.
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