It occurred to me this week that I am probably already cured of leukemia, and the remaining 21 months of this chemo is just to bring the odds closer to 100%. I ran this by Dr. Spillane and he said that was right, most people just don’t realize it. So I am trying that on now, saying I have chemotherapy, not I have leukemia. Not sure about it yet; I don’t think I can get nearly as much sympathy with chemo as with leukemia. Looks like I get a week break from treatments after next week, let the body recover before we start phase III, late intensification. That starts with a bang, so I will need to be ready.
Another pretty dull week, chemo switched back to vincristine (numbmeup) and asparaginase (punchmeinthegut) on Tuesday and asparaginase on Friday, same next week. I could tell my counts were still dropping on Monday, from the cyclophosphamide 2 weeks earlier and then 8 shots of cytarabine, and sure enough my blood test on Tuesday showed I needed 2 units. They of course could not get the O+ cmv- irradiated ooddball blood I need, so we set it up for Wed. I went in at 9am on Wed., and was done by 3pm.
While I was getting the blood, I mentioned to the nurse that I really liked those do-raggy like caps the OR docs wore – the ones you see on TV have all these fancy designs on them. She said she’d see if she could get me one. Sure enough a Doc comes by a half-hour later and hands me one, not the fancy kind but the free pharmaceutical rep kind. I was hoping for Viagra, but I got NimBex, some muscle relaxant. That’s cool. I may go over to the uniform shop and buy a fancy one.
When I went into the blood lab on Fri. for another blood test, the tech knew me by name, and the receptionist decided to pre-fill a bunch of paperwork for me. When she sees me come in, all I have to do is say ‘Hi Raquel’, and she will drop my paperwork into the lab. I am not sure if this is good or bad, I suppose good, less time waiting around. When people are waiting for blood tests and x-rays, or in medical facilities in general, they are not sociable. They probably figure the others waiting are unhealthy, and rightly so. I’ve gotten past that and will start conversations, make comments on TV news, and tell everyone how to get free coffee in the hospital cafeteria. Just my way of saying that I am still the chief bull-goose loony!
Apparently Wed. or Thurs. was the low-point for my blood, because I was sitting at the breakfast table Thurs. and started a minor nosebleed. Platelets and WBCs are not included in the blood you get, as they can cause immune reactions and are not generally needed. The platelet and WBC counts were up on Friday’s tests of their own accord, and today I feel better, less leg cramping and a little more vigor. I started sneezing like a madman last night and thought I caught a cold, but today my eyes are all watery and I am still sneezing with no other symptoms, so it must be allergies. I am hesitant to take any more drugs like Allegra, at some point something has to interact. Remember the waste jars in chemistry lab, but you had to keep some stuff separate?
I am really struggling at keeping the weight down - hovering near 180. During the good weeks I can go for walks and do yoga, but I can’t seem to get my ass in gear when the blood counts are low. Quitting smoking didn’t help; actually maybe that is the whole deal, as every other time I quit the butts I gained 10+ pounds. I am going to look into some tai chi this week, I need a drill sergeant. I worry about tipping over with the numb feet; I have noticed a distinct loss of balance as the numbing spreads.
I fired Charter Internet this week and went to DSL, and I have to move all the BLOG pics, so if they all disappear I didn’t get it done.
Saturday, April 30, 2005
Saturday, April 23, 2005
Hakuna matata - bless you
I didn’t have much to say this week, so I didn’t say it. About the only eventful thing that happened this week is I didn’t throw up on anyone at dinner at the 1865 restaurant on Tuesday night. Our great friend Gerardo came in from Madrid, so we had a nice cookout dinner at Stacy’s on Sunday, and then on Tuesday Gerardo took us all out to dinner. I had a shot of cytarabine and of procrit that morning, and have never had any reaction to those two. Doesn’t it figure that, as we sit down at 1865, I feel this gurgling in the gut. Too late to take any anti-emetics; I grin and bear it. When the entrees arrive, my swordfish is bathing in this heavy reduction sauce, sitting on a bed of garlic potatoes. I take about five bites, and that is it. Dana and I are in this booth, and Lia is on my left, and has me trapped in the booth. Lia looks at me, sees that I am whiter than paste, and moves her seat over an extra foot, as far as she can go, and I appreciate the room. I wore the Indiana Jones hat, and I am considering that, or will I make it to the rest room?
The feeling fades. I sit tight, and drink another 12 glasses of water. We all get in a heated discussion of the Marketplace Project, which will put another shopping mall on the outskirts of town. Dinner is finally over, and we all go to leave, and when I stand the nausea returns like a tsunami – you know the wave is coming, but you don’t know how big it will be. READER WARNING – GRAPHIC NAUSEA SCENE AHEAD. Standing in the lobby to say goodbye to Gerardo it is all I can do to hold it. As we walk to the car I find a discreet garden area and finally lose it there, fertilizing the plants with what looks like stomach lining mixed with Alka-Seltzer. Feeling much better, we go home. I am thankful that nobody had to witness that, and I am sorry that it was such a boring week I had to describe it here.
I figured it was the cyclophosphamide from the week before, the stuff that really kicks me, but Nurse Sue thinks it was the cytarabine finally building up in me to the nausea point. Next day I take the anti-nausea pill, then the cytarabine shot, and I do that every day and have no further problems. Next week it is back to l-asparaginase gut smackers and vincristine the numbness drug. The numbness in the feet and hands is getting really annoying, totally messes with doing tae kwon do.
Started contemplating the Jade fountain I always said I would build. All the materials are here, ready to go, but the final design will not present itself. It was supposed to be this beachy thing, but that has faded, and now an Oriental rock garden/mountain stream is coming in, complete with Bonsai. Always wanted some Bonsai. It seems like it will be really big, though. I am going to have to ponder this further.
April 15 came and went. That was the day I would’ve died if leukemia had gone undetected, assuming three months from starting to parting. I know back in early Feb when I first heard I had leukemia and heard it had a three month fatality, I thought Well, I am not doing taxes, 4/15 is my dying day, sorry Dana. I am not sure how to consider all the days after this – bonus days? It all seems morbid to consider, so I may have to drop the whole notion. I have noticed that a lot of journals of people that go through cancer include days since diagnosis. That would be dX+73 for me. The weird thing is I don’t feel particularly mortal, no more so than in the past. Well, maybe a little. I read the obits page closer, and am cheered when everyone that dies is over 70.
Another strange thing to contemplate is that I may already be 100% leukemia-free. The next year and a half of treatment could all be for naught. There is no way you’d forego it; one little leukemic bastard hiding out in my spine or cranium and we’re back to square one, and of course that is how and why they ended up developing all these treatments in the first place. It sure would be nice if they had some Star Trek scanner and just scanned me and said, OK, this guy’s clear. I remember the episode where the crew comes back to Earth in the present day, and they are in a hospital, and Dr. McCoy passes some lady moaning on a bed. He scans her, gives her a pill, and says ‘These people are barbarians!’ I wonder how long it will be before they look at these chemo treatments in that way.
There were a couple of other big happenings this week. I got my finger slammed in son John’s door in January, and the finger was broken. The nail was broken in a diagonal line across the mid-point, and I have had a bandaid on it since. The nurses have all told me not to let that nail fall off, as it would be a big site for infection, so I have been wearing a bandaid for 3 months. It got to the point where all that was left holding the nail on was a spot this big – O – near the tip of the nail. The new nail was growing in underneath and was 1/3rd of the way out. So, I trimmed it all down to the last little nub, which finally tore off a couple of days ago. This has reduced my typos by 1/4th. I know the chemo impacts nail growth quite a bit, and I wonder if the gnarled beginning growth for this nail shows that or the trauma from being slammed in a door.
The other big happening is I received a card from Bill and Hilary Clinton. I have long since forgiven Bill for being stupid enough to provide ammo to his detractors by being so damn human, and I think history will measure him as one of the true global leaders of our time, so I was pleased to get this card. It also says something to me that of all the people Dana asked to send a card, 1 in 4 did so – Larry Bird, Arnold Scharzenegger, Robin Williams, Angelina Jolie, The Clintons, Vanna White and Michael Jordan. It says, they either have great PR machines, or they are people people.
The feeling fades. I sit tight, and drink another 12 glasses of water. We all get in a heated discussion of the Marketplace Project, which will put another shopping mall on the outskirts of town. Dinner is finally over, and we all go to leave, and when I stand the nausea returns like a tsunami – you know the wave is coming, but you don’t know how big it will be. READER WARNING – GRAPHIC NAUSEA SCENE AHEAD. Standing in the lobby to say goodbye to Gerardo it is all I can do to hold it. As we walk to the car I find a discreet garden area and finally lose it there, fertilizing the plants with what looks like stomach lining mixed with Alka-Seltzer. Feeling much better, we go home. I am thankful that nobody had to witness that, and I am sorry that it was such a boring week I had to describe it here.
I figured it was the cyclophosphamide from the week before, the stuff that really kicks me, but Nurse Sue thinks it was the cytarabine finally building up in me to the nausea point. Next day I take the anti-nausea pill, then the cytarabine shot, and I do that every day and have no further problems. Next week it is back to l-asparaginase gut smackers and vincristine the numbness drug. The numbness in the feet and hands is getting really annoying, totally messes with doing tae kwon do.
Started contemplating the Jade fountain I always said I would build. All the materials are here, ready to go, but the final design will not present itself. It was supposed to be this beachy thing, but that has faded, and now an Oriental rock garden/mountain stream is coming in, complete with Bonsai. Always wanted some Bonsai. It seems like it will be really big, though. I am going to have to ponder this further.
April 15 came and went. That was the day I would’ve died if leukemia had gone undetected, assuming three months from starting to parting. I know back in early Feb when I first heard I had leukemia and heard it had a three month fatality, I thought Well, I am not doing taxes, 4/15 is my dying day, sorry Dana. I am not sure how to consider all the days after this – bonus days? It all seems morbid to consider, so I may have to drop the whole notion. I have noticed that a lot of journals of people that go through cancer include days since diagnosis. That would be dX+73 for me. The weird thing is I don’t feel particularly mortal, no more so than in the past. Well, maybe a little. I read the obits page closer, and am cheered when everyone that dies is over 70.
Another strange thing to contemplate is that I may already be 100% leukemia-free. The next year and a half of treatment could all be for naught. There is no way you’d forego it; one little leukemic bastard hiding out in my spine or cranium and we’re back to square one, and of course that is how and why they ended up developing all these treatments in the first place. It sure would be nice if they had some Star Trek scanner and just scanned me and said, OK, this guy’s clear. I remember the episode where the crew comes back to Earth in the present day, and they are in a hospital, and Dr. McCoy passes some lady moaning on a bed. He scans her, gives her a pill, and says ‘These people are barbarians!’ I wonder how long it will be before they look at these chemo treatments in that way.
There were a couple of other big happenings this week. I got my finger slammed in son John’s door in January, and the finger was broken. The nail was broken in a diagonal line across the mid-point, and I have had a bandaid on it since. The nurses have all told me not to let that nail fall off, as it would be a big site for infection, so I have been wearing a bandaid for 3 months. It got to the point where all that was left holding the nail on was a spot this big – O – near the tip of the nail. The new nail was growing in underneath and was 1/3rd of the way out. So, I trimmed it all down to the last little nub, which finally tore off a couple of days ago. This has reduced my typos by 1/4th. I know the chemo impacts nail growth quite a bit, and I wonder if the gnarled beginning growth for this nail shows that or the trauma from being slammed in a door.
The other big happening is I received a card from Bill and Hilary Clinton. I have long since forgiven Bill for being stupid enough to provide ammo to his detractors by being so damn human, and I think history will measure him as one of the true global leaders of our time, so I was pleased to get this card. It also says something to me that of all the people Dana asked to send a card, 1 in 4 did so – Larry Bird, Arnold Scharzenegger, Robin Williams, Angelina Jolie, The Clintons, Vanna White and Michael Jordan. It says, they either have great PR machines, or they are people people.
Saturday, April 16, 2005
Camping and golfing
Tuesday the 12th
Camping was all right, came back yesterday late afternoon and instantly threw the poison oak-covered dog in the bath. I hit the cold shower right after, to get any urushiol oil off of me, that’s scientist talk for poison oak oil. Cold water keeps the pores closed and you less oil gets into your pores that way.
The poison oak is really lush this year, with all the rain, and the paths are covered over in a lot of places, so we no doubt contacted the nasty stuff and had our faith in the Lord tested a little. Woody loves Plaskett Creek campground, and all his buddies in the raccoon gang there, and he parties with them all night. I wouldn’t let Woody sleep in the tent, because he already had gone in the bush and had the dreaded PO on him, so he guarded the perimeter instead, and that is a big job, since the ‘coons are plentiful and aggressive. They could kick his little 20-lb. butt too, but he is quick and willing, so he parties away with them, running through all the poison oak. He looked so tired in the morning.
We got up to the campground about 2:00 Sunday, set up camp, played some bocce, drank some beer. One of the guys brought some very good home brew, and we had some of that. Around 5:00 we all decided to take a hike down into Jade Cove and look for jade, since it was low tide, so away we went. I wasn’t too sure about this venture – it was hiking up from Jade Cove that first made me think there was something really wrong with me, back on January 15. It’s about ½ mile downhill to the cliff from the campground, then a somewhat slippery descent of 300’. This used to take about 3-5 minutes, one shot - no stopping. I let everyone go ahead and took my time.
About 1/3rd of the way down my thighs were spent and my pulse was at 125. I sat down and reconsidered, thinking more about the return uphill trip. Of course the other dudes were already down there, and what would they think if I didn’t show, that I was hurt or stuck? Would they come looking for me? Woody had gone ahead with Beauchemin, but he came back for me, so I continued down, took another couple of breaks and made it no problem. I hung around in the cove for an hour, then I started back out ahead of the rest, took a couple of breaks on the way up, and made it without any problems.
I was spent, though, and couldn’t last long enough to get a poker game going. Back at camp we had a feast of sausages and steak, more beer, guacamole and chips, brownies. I hit the tent at 10pm, and woke up at 6 am. Beauch was making coffee, the fire was going, so we heated up some more sausage for breakfast. Played some foot bocce (a variant that keeps the mud off the hands), drank coffee. Around 8:00 am we all decided to go back to Jade Cove. I felt much stronger than the night before, so away we went, same multiple break routine, no problems.
Saturday the 16th
Never did get any poison oak, and I consider that pretty lucky. I did get the big slam of chemo on Tuesday, and a spinal tap with chemo in the spine on Wed. I am starting to feel the chemo effects, a little less energy, a little more nauseous. I asked yesterday at the doc’s, how bad should I be feeling, and they said pretty bad, but you’ll feel worse next week. So there is that to look forward to.
I went golfing last night, played 11 holes. It was ugly and glorious all at once. We were going to go Wed. night, then Thurs. night, but it was really windy Wed. and the Red Sox were playing the NY Yankers Thursday. When I went in for my chemo shot on Friday am, I told them to shoot me in the left arm. I’d been avoiding that spot in anticipation of golfing, but realized that was keeping us from golfing. The karma of pain must be the fulcrum for the yin-yang of the swing plane. Sure enough, 5:30 I hit my tee shot on #1 at Morro Bay, a weak fade 270 yards, but in the fairway. It got uglier from there. I triple bogeyed the first five holes, and Mike B. said ‘This leukemia is great, I might kick your ass!’
We hooked up with the famous golfing Leary brothers on #6, and it all changed. I outdrove everyone, hit sand wedge to the green and 2-putted for par. Mike was a little nervous. I had to rethink the whole swing, it couldn’t be the athletic aggressive swing of the past. I decided to make it into the circle of life swing, a little Simba swing, hakunamatatta if you will. Just let the ball get in the way. Sure there were some more duffs, a few trees, some barkies, but I parred a couple more holes, had some good swings, and all in all consider it a good start. Mike did beat me for the first time ever, but that’s OK, his run is over. I am MacArthur, and Morro Bay is the Philippines!
I got the PC back up and running with a new drive, and I will have to do some soldering to try to recover the data from the old hard drive. The other old HD did die, the one that was making all the noise. Amazingly that drive booted up and ran until I had the new drive configured, and then it gasped and expired. I realized a lot of pictures are on the laptop, so I didn’t’ lose too much - pride, esteem, a hard drive, an entire catalog of photos I will have to redo. I will try to make up some Eyebrow Lowbrow while I am rebuilding the photo catalog.
Camping was all right, came back yesterday late afternoon and instantly threw the poison oak-covered dog in the bath. I hit the cold shower right after, to get any urushiol oil off of me, that’s scientist talk for poison oak oil. Cold water keeps the pores closed and you less oil gets into your pores that way.
The poison oak is really lush this year, with all the rain, and the paths are covered over in a lot of places, so we no doubt contacted the nasty stuff and had our faith in the Lord tested a little. Woody loves Plaskett Creek campground, and all his buddies in the raccoon gang there, and he parties with them all night. I wouldn’t let Woody sleep in the tent, because he already had gone in the bush and had the dreaded PO on him, so he guarded the perimeter instead, and that is a big job, since the ‘coons are plentiful and aggressive. They could kick his little 20-lb. butt too, but he is quick and willing, so he parties away with them, running through all the poison oak. He looked so tired in the morning.
We got up to the campground about 2:00 Sunday, set up camp, played some bocce, drank some beer. One of the guys brought some very good home brew, and we had some of that. Around 5:00 we all decided to take a hike down into Jade Cove and look for jade, since it was low tide, so away we went. I wasn’t too sure about this venture – it was hiking up from Jade Cove that first made me think there was something really wrong with me, back on January 15. It’s about ½ mile downhill to the cliff from the campground, then a somewhat slippery descent of 300’. This used to take about 3-5 minutes, one shot - no stopping. I let everyone go ahead and took my time.
About 1/3rd of the way down my thighs were spent and my pulse was at 125. I sat down and reconsidered, thinking more about the return uphill trip. Of course the other dudes were already down there, and what would they think if I didn’t show, that I was hurt or stuck? Would they come looking for me? Woody had gone ahead with Beauchemin, but he came back for me, so I continued down, took another couple of breaks and made it no problem. I hung around in the cove for an hour, then I started back out ahead of the rest, took a couple of breaks on the way up, and made it without any problems.
I was spent, though, and couldn’t last long enough to get a poker game going. Back at camp we had a feast of sausages and steak, more beer, guacamole and chips, brownies. I hit the tent at 10pm, and woke up at 6 am. Beauch was making coffee, the fire was going, so we heated up some more sausage for breakfast. Played some foot bocce (a variant that keeps the mud off the hands), drank coffee. Around 8:00 am we all decided to go back to Jade Cove. I felt much stronger than the night before, so away we went, same multiple break routine, no problems.
Saturday the 16th
Never did get any poison oak, and I consider that pretty lucky. I did get the big slam of chemo on Tuesday, and a spinal tap with chemo in the spine on Wed. I am starting to feel the chemo effects, a little less energy, a little more nauseous. I asked yesterday at the doc’s, how bad should I be feeling, and they said pretty bad, but you’ll feel worse next week. So there is that to look forward to.
I went golfing last night, played 11 holes. It was ugly and glorious all at once. We were going to go Wed. night, then Thurs. night, but it was really windy Wed. and the Red Sox were playing the NY Yankers Thursday. When I went in for my chemo shot on Friday am, I told them to shoot me in the left arm. I’d been avoiding that spot in anticipation of golfing, but realized that was keeping us from golfing. The karma of pain must be the fulcrum for the yin-yang of the swing plane. Sure enough, 5:30 I hit my tee shot on #1 at Morro Bay, a weak fade 270 yards, but in the fairway. It got uglier from there. I triple bogeyed the first five holes, and Mike B. said ‘This leukemia is great, I might kick your ass!’
We hooked up with the famous golfing Leary brothers on #6, and it all changed. I outdrove everyone, hit sand wedge to the green and 2-putted for par. Mike was a little nervous. I had to rethink the whole swing, it couldn’t be the athletic aggressive swing of the past. I decided to make it into the circle of life swing, a little Simba swing, hakunamatatta if you will. Just let the ball get in the way. Sure there were some more duffs, a few trees, some barkies, but I parred a couple more holes, had some good swings, and all in all consider it a good start. Mike did beat me for the first time ever, but that’s OK, his run is over. I am MacArthur, and Morro Bay is the Philippines!
I got the PC back up and running with a new drive, and I will have to do some soldering to try to recover the data from the old hard drive. The other old HD did die, the one that was making all the noise. Amazingly that drive booted up and ran until I had the new drive configured, and then it gasped and expired. I realized a lot of pictures are on the laptop, so I didn’t’ lose too much - pride, esteem, a hard drive, an entire catalog of photos I will have to redo. I will try to make up some Eyebrow Lowbrow while I am rebuilding the photo catalog.
Saturday, April 09, 2005
Intelligent design? or Barely evolved?
Saturday April 9, No Cookout Day
There was one epic event this week – I hit a bucket of golf balls at the driving range. I didn’t hit them far, or straight, but I hit them. Had to swing easy, but that’s OK in golf, don’t watch Tiger Woods if you want to score because you are not him. If you or I swing like Tiger the ball will go sideways, trust me. It was good to get out to the range. Same old stuff too, Jack the golf coach could not shut up with the tips, and they are usually spot on, but give me a break, I barely have any muscles left. My legs were wobbling like a newborn colt’s half way through the bucket and I didn’t finish it, but it's a start. Next week, 9 holes, chemo take the hindmost.
After thinking about it quite a bit, it seems to me that my blood counts went down last week not in response to chemo, but really because of world attention deficit disorder (WADD). Everyone turned their attention to Terri Schiavo, then to the Pope, and here I am just now recovering from the low blood counts. Focus, people, focus.
Seriously, my counts are back, but the blood is still in the neutropenic range, so it was smart to postpone the cookout. The doc thinks it is the cytoxan that hammered me the most, which I got on March 15 (beware the Ides). That means the nadir (low point) was at 10-20 days. I am ending Phase II-A just now, starting Phase II-B Tuesday, meaning same cycle for four more weeks, meaning cytoxan on Tuesday, spinal tap with methotrexate on Wednesday, and the pukey 6MP daily for 2 weeks. Therefore I can expect another nadir from around April 27 to May 5 or so.
Phase III will start on May 10, kicking off with 12 days straight of cranial irradiation, to kill any leukemic bastards hiding in my skull, those nattering nabobs of negativity. That will probably not be a good time for a cookout. Maybe May 7 we can have a cookout? See how tricky this is? Anyone want to argue Intelligent Design?
Dana came home with a cold yesterday, so I am expecting to get sick, although I am still on antibiotics. Of course we all know antibiotics do nothing against the common cold. I am being obstinate and not wearing the HEPA mask, and she thinks the paper masks don’t do anything. She took the couch last night – I was going to take Mike’s top bunk, but he said I was too noisy. Kids are so understanding.
I am supposed to go camping tomorrow, overnighter to Plaskett Creek, about 70 miles north. No big hikes, no surfing, just play cribbage and bocce and drink a few beers. No alcohol with 6-MP, so I will be back on the no alcohol diet on Tuesday, but that’s no big deal. The doc wasn’t keen on the camping trip, but I have to get out of here at least every few weeks or I’ll go mental (more mental).
I have this great email from a friend that has finished chemo 2 ½ weeks ago – she says she is starting to feel great, has some energy, the world is looking up! Two months down, only 1 ½ years to go! The co-pays at $20/visit will total over $5K this year. Thankfully I am saving a fortune on gas by not going anywhere.
The Dark Side
My PC started giving me a lot of trouble this week. The drive that has my OS on it suddenly wouldn’t load, and this after I ran diagnostics on it twice. It had started to make that sick bearing noise, like an electric razor on tin foil, zzzzzttt....zzzzztttt, so I thought trouble was coming. Luckily I had all my photos, docs, and Quicken files on the other drive. Well, I farted around with Windows XP, trying to repair, reinstall, recover, until I had worked myself into that dark side state I was prone to before chemo, and now with chemo, no energy, mild fever, bad sleep, numb hands and feet, look out Mama this boiler's gonna blow! I yanked that drive out of there and gave it a good body slam. Except, oops, wrong drive. Anyone want to argue intelligent design? God meant for me to be like this?
Through some miracle of extreme PC sarcasm, the OS drive did recover, but I have lost all photos since January and Quicken since Feb., and all my wife's second grade typed versions of poems. And I need a new drive. I am going to try to switch the platters between the 2 drives, which Seagate assures me is a formula for disaster, but I have already proven to be an idiot so why not. The OS drive is going, the bearing noise is still there, it just gave me a reprieve so it could laugh at me. So, no eyebrow lowbrow today.
There was one epic event this week – I hit a bucket of golf balls at the driving range. I didn’t hit them far, or straight, but I hit them. Had to swing easy, but that’s OK in golf, don’t watch Tiger Woods if you want to score because you are not him. If you or I swing like Tiger the ball will go sideways, trust me. It was good to get out to the range. Same old stuff too, Jack the golf coach could not shut up with the tips, and they are usually spot on, but give me a break, I barely have any muscles left. My legs were wobbling like a newborn colt’s half way through the bucket and I didn’t finish it, but it's a start. Next week, 9 holes, chemo take the hindmost.
After thinking about it quite a bit, it seems to me that my blood counts went down last week not in response to chemo, but really because of world attention deficit disorder (WADD). Everyone turned their attention to Terri Schiavo, then to the Pope, and here I am just now recovering from the low blood counts. Focus, people, focus.
Seriously, my counts are back, but the blood is still in the neutropenic range, so it was smart to postpone the cookout. The doc thinks it is the cytoxan that hammered me the most, which I got on March 15 (beware the Ides). That means the nadir (low point) was at 10-20 days. I am ending Phase II-A just now, starting Phase II-B Tuesday, meaning same cycle for four more weeks, meaning cytoxan on Tuesday, spinal tap with methotrexate on Wednesday, and the pukey 6MP daily for 2 weeks. Therefore I can expect another nadir from around April 27 to May 5 or so.
Phase III will start on May 10, kicking off with 12 days straight of cranial irradiation, to kill any leukemic bastards hiding in my skull, those nattering nabobs of negativity. That will probably not be a good time for a cookout. Maybe May 7 we can have a cookout? See how tricky this is? Anyone want to argue Intelligent Design?
Dana came home with a cold yesterday, so I am expecting to get sick, although I am still on antibiotics. Of course we all know antibiotics do nothing against the common cold. I am being obstinate and not wearing the HEPA mask, and she thinks the paper masks don’t do anything. She took the couch last night – I was going to take Mike’s top bunk, but he said I was too noisy. Kids are so understanding.
I am supposed to go camping tomorrow, overnighter to Plaskett Creek, about 70 miles north. No big hikes, no surfing, just play cribbage and bocce and drink a few beers. No alcohol with 6-MP, so I will be back on the no alcohol diet on Tuesday, but that’s no big deal. The doc wasn’t keen on the camping trip, but I have to get out of here at least every few weeks or I’ll go mental (more mental).
I have this great email from a friend that has finished chemo 2 ½ weeks ago – she says she is starting to feel great, has some energy, the world is looking up! Two months down, only 1 ½ years to go! The co-pays at $20/visit will total over $5K this year. Thankfully I am saving a fortune on gas by not going anywhere.
The Dark Side
My PC started giving me a lot of trouble this week. The drive that has my OS on it suddenly wouldn’t load, and this after I ran diagnostics on it twice. It had started to make that sick bearing noise, like an electric razor on tin foil, zzzzzttt....zzzzztttt, so I thought trouble was coming. Luckily I had all my photos, docs, and Quicken files on the other drive. Well, I farted around with Windows XP, trying to repair, reinstall, recover, until I had worked myself into that dark side state I was prone to before chemo, and now with chemo, no energy, mild fever, bad sleep, numb hands and feet, look out Mama this boiler's gonna blow! I yanked that drive out of there and gave it a good body slam. Except, oops, wrong drive. Anyone want to argue intelligent design? God meant for me to be like this?
Through some miracle of extreme PC sarcasm, the OS drive did recover, but I have lost all photos since January and Quicken since Feb., and all my wife's second grade typed versions of poems. And I need a new drive. I am going to try to switch the platters between the 2 drives, which Seagate assures me is a formula for disaster, but I have already proven to be an idiot so why not. The OS drive is going, the bearing noise is still there, it just gave me a reprieve so it could laugh at me. So, no eyebrow lowbrow today.
Monday, April 04, 2005
Quit yer whining
Monday noon
I just came back from the hospital where I had a blood test, but I won’t get the results for three hours, so I wait. I wore the old pink HEPA mask in the hospital, and that was probably smart although it cries out “This person has AIDS!” At first I thought that was just my weird thought, but I asked a number of people what they thought when they saw someone in the pink HEPA mask, and they all said AIDS. Think about it, and you realize how stupid that is. Why would you want to advertise what disease anyone has? And maybe it is all in my head, but it sure seems people react funny when I wear that thing, like I must be infectious. The outpatient room was pretty busy at French Hosp. today, maybe 15 people waiting, and you can feel the looks boring into your head.
On a side note, the NFL had to remove the word ‘gay’ from its list of words banned to go on jerseys, because Randall Gay was a member of the Patriots. What does it say about society when we ban perfectly good words because the ignorant attach stigmas to them?
What an ugly Saturday I had, filled with negative thinking and dark thoughts. The thought that I might have relapsed was eating me up, and I let it for a while. All the random pains that come with this disease, or do they just come from making it to 50, come to the front at times like that; knee pains, hip pains, various joint and bone pains, back pains, headaches, I was really focused on all my pains. Smart. And when you can’t get out of the house or really do anything, it’s hard to get distracted. Oh woe is me.
I’ve been running a low-grade fever (99.5) since Saturday, maybe psychosomatic, and the chills and sweats are annoying, but the fever is controllable with Tylenol. Had to sleep on a towel last night and change t-shirts twice, yuck.
Email quote of the day (I should really keep the quote of the day going because there is always a good one), from an old RI rocker with a little more hair than me:
“Let us know when the Stones and Elton John party will be. Maybe we can make that one. “
A joke, from www.thefurrymonkey.co.uk/jokes
A UNIQUE IRISH CELEBRATION*
An Irishman named Mike O'Leary went to his doctor after a long illness. The doctor, after a lengthy examination, sighed and looked Mike in the eye and said, "I've some bad news for you... you have a cancer known as Galloping Leukemia and it can't be cured. I give you two weeks to a month." Mike, who was shocked and saddened by the news, but of solid character, managed to compose himself and walk from the doctor's office into the waiting room. There he saw his son, who had been waiting. Mike said, "Son, we Irish celebrate when things are good and we celebrate when things don't go so well. In this case, things aren't so well. I have cancer and I've been given a short time to live. Let's head for the pub and have a few pints." After three or four pints, the two were feeling a little less somber. There were some laughs, some tears, and more beers. They were eventually approached by some of Mike's old friends who asked what the two were celebrating. Mike told them that the Irish celebrate the good and the bad. He went on to tell them that they were drinking to his impending end. He told his friends, "I've only got a few weeks to live as I have been diagnosed with AIDS."The friends gave O'Leary their condolences and they all had a few more beers. After his friends left, Mike's son leaned over and whispered in confusion, "Dad, I thought you said that you were dying from cancer. You just told your friends that you were dying from AIDS." Mike replied, "I am dying from cancer, son. I just don't want any of them sleeping with your mother after I'm gone."
On a more serious note, this is the best site I have seen for explaining ALL and some of the odds:
http://adam.about.com/reports/000086.htm
And this is an interesting site that explains why the odds don’t matter:
http://www.cancerguide.org/median_not_msg.html
Thought I’d be golfing today; still might get in 9 holes at the twilight rate and watch the NCAA finals with the boys, drink a beer or two.
Monday 6pm
It’s 6pm now, and I guess golfing is out, NCAA at home is in. We got the results of this am’s blood tests, and they are mixed but hopeful, I think. Platelets and reds are way up; WBCs are slightly down. My interpretation is that the chemo switch last week back to asparaginase and vincristine has slammed WBCs and they take longer to recover than reds and platelets. I did not talk to the doc, but he did not leave me any discouraging message, and I have a regular appointment tomorrow, so I think it’s all good news. I have to remind myself that this is a rocky road, and these chemo switches are going to have weird and nasty side effects. Don’t be surprised if I show my dark side, though.
I just came back from the hospital where I had a blood test, but I won’t get the results for three hours, so I wait. I wore the old pink HEPA mask in the hospital, and that was probably smart although it cries out “This person has AIDS!” At first I thought that was just my weird thought, but I asked a number of people what they thought when they saw someone in the pink HEPA mask, and they all said AIDS. Think about it, and you realize how stupid that is. Why would you want to advertise what disease anyone has? And maybe it is all in my head, but it sure seems people react funny when I wear that thing, like I must be infectious. The outpatient room was pretty busy at French Hosp. today, maybe 15 people waiting, and you can feel the looks boring into your head.
On a side note, the NFL had to remove the word ‘gay’ from its list of words banned to go on jerseys, because Randall Gay was a member of the Patriots. What does it say about society when we ban perfectly good words because the ignorant attach stigmas to them?
What an ugly Saturday I had, filled with negative thinking and dark thoughts. The thought that I might have relapsed was eating me up, and I let it for a while. All the random pains that come with this disease, or do they just come from making it to 50, come to the front at times like that; knee pains, hip pains, various joint and bone pains, back pains, headaches, I was really focused on all my pains. Smart. And when you can’t get out of the house or really do anything, it’s hard to get distracted. Oh woe is me.
I’ve been running a low-grade fever (99.5) since Saturday, maybe psychosomatic, and the chills and sweats are annoying, but the fever is controllable with Tylenol. Had to sleep on a towel last night and change t-shirts twice, yuck.
Email quote of the day (I should really keep the quote of the day going because there is always a good one), from an old RI rocker with a little more hair than me:
“Let us know when the Stones and Elton John party will be. Maybe we can make that one. “
A joke, from www.thefurrymonkey.co.uk/jokes
A UNIQUE IRISH CELEBRATION*
An Irishman named Mike O'Leary went to his doctor after a long illness. The doctor, after a lengthy examination, sighed and looked Mike in the eye and said, "I've some bad news for you... you have a cancer known as Galloping Leukemia and it can't be cured. I give you two weeks to a month." Mike, who was shocked and saddened by the news, but of solid character, managed to compose himself and walk from the doctor's office into the waiting room. There he saw his son, who had been waiting. Mike said, "Son, we Irish celebrate when things are good and we celebrate when things don't go so well. In this case, things aren't so well. I have cancer and I've been given a short time to live. Let's head for the pub and have a few pints." After three or four pints, the two were feeling a little less somber. There were some laughs, some tears, and more beers. They were eventually approached by some of Mike's old friends who asked what the two were celebrating. Mike told them that the Irish celebrate the good and the bad. He went on to tell them that they were drinking to his impending end. He told his friends, "I've only got a few weeks to live as I have been diagnosed with AIDS."The friends gave O'Leary their condolences and they all had a few more beers. After his friends left, Mike's son leaned over and whispered in confusion, "Dad, I thought you said that you were dying from cancer. You just told your friends that you were dying from AIDS." Mike replied, "I am dying from cancer, son. I just don't want any of them sleeping with your mother after I'm gone."
On a more serious note, this is the best site I have seen for explaining ALL and some of the odds:
http://adam.about.com/reports/000086.htm
And this is an interesting site that explains why the odds don’t matter:
http://www.cancerguide.org/median_not_msg.html
Thought I’d be golfing today; still might get in 9 holes at the twilight rate and watch the NCAA finals with the boys, drink a beer or two.
Monday 6pm
It’s 6pm now, and I guess golfing is out, NCAA at home is in. We got the results of this am’s blood tests, and they are mixed but hopeful, I think. Platelets and reds are way up; WBCs are slightly down. My interpretation is that the chemo switch last week back to asparaginase and vincristine has slammed WBCs and they take longer to recover than reds and platelets. I did not talk to the doc, but he did not leave me any discouraging message, and I have a regular appointment tomorrow, so I think it’s all good news. I have to remind myself that this is a rocky road, and these chemo switches are going to have weird and nasty side effects. Don’t be surprised if I show my dark side, though.
I read today in some article discussing causes of cancer that since 1900 man has introduced 75,000 new synthetic compounds to the planet. And just think, they are giving me 1/4 of them as chemo, and another third as antibiotics.
I am beginning to think my Eyebrow Lowbrows are too small. I really liked the pic of Terri Schiavo and Pope John Paul touring the universe looking at galaxies together, and I didn’t get one word from you people. Wasn’t anyone at least offended? So today I will make it larger. That is my board on the left, and my future as the Silver Surfer touring the universe, zapping stuff and looking at my favorite galaxies, on the right.
Saturday, April 02, 2005
April Fool
Saturday morning
Isn’t it funny how, just when you think things are looking up a little bit, life just reaches out and gets hold of you and kicks you in the nuts, slaps you right back down, pees on your head as you crawl out of the hole. I made two HUGH (for Joe Kovacs, inside joke, thanks Heather) mistakes yesterday. First, I talked the doc into removing the PICC line from my arm; hey, we don’t really need it, it was convenient for the daily blood draw but we don’t do that anymore, and there is no chemo that will require it coming up. It came out easier than oiled spaghetti comes off your fork. Now I should be able to start golfing again, work out with a little vigor if I have any vigor, maybe even surf. Second, I planned a BBQ for next weekend to celebrate a little, say thanks a little.
In this part of Phase II I am getting chemo Tuesday and Friday, and blood tests on Friday. So I went in yesterday and we did the work, couple gutshots (needles in the stomach, very painless spot), blood draw, and then removed the PICC line. By the way I am renaming all chemo to be more patient oriented, so this is now numbmeup, makemepuke, makeredbloodcells and pumpupthejam. Anyways, I came home, went to see the matinee of the movie Robots with Mike, real clever movie. I came home to a message to call the Doc, my counts are in the toilet, I need transfusions, call him. I call him, and he says go to the hospital and get two units, all your counts are low, WBCs, reds, platelets. I asked how low, and he said real low. I asked if it was the chemo, and he said maybe, but we probably need a bone marrow biopsy on Monday. And here I was thinking how much I had been missing BMBs.
So I pack up the hospital kit for a six hour stay, two hours per unit of blood and two hours for paperwork, and drive over to French Hospital, five minutes away. I check in at 6pm, and they have me scheduled for a 23-hour stay. At that point I am cursing that we didn’t get the blood test results by noon, because then I could have gotten the 2 units in the doc’s office and been done by 5. They bring me into a room where some 29-year old is recovering from colon surgery. Same as when this started, only the guy was a lot older, bt colon surgery then too. There is a ten person We Just Had a Baby party going on in the corridor. Love those babies, all merconium and sputum. I can’t even see babies in a positive light at this point, how sad.
The nurse comes in after five minutes, and I ask her to put me in a room with no other people, I have low WBCs, I am neutropenic, so she goes to call the doc. Ten minutes later I am in the isolation room, double doors, one bed, similar to Stanford. Except nobody has ever been taught how to use an isolation room – they are leaving that up to me. Fun, thanks. Wait until they see my consultant fee, they won’t make that mistake again. I am just fortunate they had the room available; my guess is they use it only when someone wealthy requests a single, and have forgotten its intended use as an isolation unit.
Nurses come, nurses go. I need to make a parody of T.S. Eliot’s The Love Song of J. Alfred Prufrock.
I am at my house as I write this. I left the hospital at 7:30 this am, WBCs are still in the toilet but I am safer here than there. I am trying to stay positive on this, but I am envisioning going back to Stanford and Phase I all over, Noooooooooooooooooooooooooooo. Well, don’t panic until Monday afternoon. However, I am going to have to postpone that cookout for a month or so and see how this pans out. Grrrrrr.
Let me just vent this one thing, too. I wrote a letter to the editor of the local paper, the Tribune, to point out that we were having a blood donation crisis. They couldn’t print this, but the other stuff they printed, like why did we need to have 3 garbage cans when one was good enough before (recycling you idiot). The inane tripe makes you wonder how humans got this far. Don’t they realize MY STUFF is the most important?
I envision the Pope taking Terri Schiavo to God’s favorite places in the cosmos, as a reward for waiting so long to finish the journey. That would be nice. Hence, today’s Eyebrow Lowbrow
Isn’t it funny how, just when you think things are looking up a little bit, life just reaches out and gets hold of you and kicks you in the nuts, slaps you right back down, pees on your head as you crawl out of the hole. I made two HUGH (for Joe Kovacs, inside joke, thanks Heather) mistakes yesterday. First, I talked the doc into removing the PICC line from my arm; hey, we don’t really need it, it was convenient for the daily blood draw but we don’t do that anymore, and there is no chemo that will require it coming up. It came out easier than oiled spaghetti comes off your fork. Now I should be able to start golfing again, work out with a little vigor if I have any vigor, maybe even surf. Second, I planned a BBQ for next weekend to celebrate a little, say thanks a little.
In this part of Phase II I am getting chemo Tuesday and Friday, and blood tests on Friday. So I went in yesterday and we did the work, couple gutshots (needles in the stomach, very painless spot), blood draw, and then removed the PICC line. By the way I am renaming all chemo to be more patient oriented, so this is now numbmeup, makemepuke, makeredbloodcells and pumpupthejam. Anyways, I came home, went to see the matinee of the movie Robots with Mike, real clever movie. I came home to a message to call the Doc, my counts are in the toilet, I need transfusions, call him. I call him, and he says go to the hospital and get two units, all your counts are low, WBCs, reds, platelets. I asked how low, and he said real low. I asked if it was the chemo, and he said maybe, but we probably need a bone marrow biopsy on Monday. And here I was thinking how much I had been missing BMBs.
So I pack up the hospital kit for a six hour stay, two hours per unit of blood and two hours for paperwork, and drive over to French Hospital, five minutes away. I check in at 6pm, and they have me scheduled for a 23-hour stay. At that point I am cursing that we didn’t get the blood test results by noon, because then I could have gotten the 2 units in the doc’s office and been done by 5. They bring me into a room where some 29-year old is recovering from colon surgery. Same as when this started, only the guy was a lot older, bt colon surgery then too. There is a ten person We Just Had a Baby party going on in the corridor. Love those babies, all merconium and sputum. I can’t even see babies in a positive light at this point, how sad.
The nurse comes in after five minutes, and I ask her to put me in a room with no other people, I have low WBCs, I am neutropenic, so she goes to call the doc. Ten minutes later I am in the isolation room, double doors, one bed, similar to Stanford. Except nobody has ever been taught how to use an isolation room – they are leaving that up to me. Fun, thanks. Wait until they see my consultant fee, they won’t make that mistake again. I am just fortunate they had the room available; my guess is they use it only when someone wealthy requests a single, and have forgotten its intended use as an isolation unit.
Nurses come, nurses go. I need to make a parody of T.S. Eliot’s The Love Song of J. Alfred Prufrock.
In the halls the nurses come and go,As I reread this I realize I can’t parody it because it is too good; he yearns for a woman the way you end up yearning for life when it is threatened interchangeable, and he in fact compares the two:
speaking of reduced oxygen flow
And the afternoon, the evening, sleeps so peacefully!That was quite a digression, sorry. So, nurses come and go, and at 9pm they hook me up to the first unit. They are having a little crisis at the local blood bank getting O+, and this blood needs to be some special CMV irradiated stuff, hence the delay. So I am here for the night. Dana comes to visit at 10pm; she has been in Santa Barbara for the day with a friend, and thought I was just popping in for a couple shots of blood.
Smoothed by long
fingers,
Asleep...tired...or it malingers,
Stretched on the floor, here
beside you and me.
Should I, after tea and cakes and ices,
Have the
strength to force the moment to its crisis?
But though I have wept and
fasted, wept and prayed,
Though I have seen my head (grown slightly bald)
brought in upon a platter,
I am no prophet--and here's no great matter;
I have seen the moment of my greatness flicker,
I have seen the eternal
Footman hold my coat, and snicker,
And in short, I was afraid.
I am at my house as I write this. I left the hospital at 7:30 this am, WBCs are still in the toilet but I am safer here than there. I am trying to stay positive on this, but I am envisioning going back to Stanford and Phase I all over, Noooooooooooooooooooooooooooo. Well, don’t panic until Monday afternoon. However, I am going to have to postpone that cookout for a month or so and see how this pans out. Grrrrrr.
Let me just vent this one thing, too. I wrote a letter to the editor of the local paper, the Tribune, to point out that we were having a blood donation crisis. They couldn’t print this, but the other stuff they printed, like why did we need to have 3 garbage cans when one was good enough before (recycling you idiot). The inane tripe makes you wonder how humans got this far. Don’t they realize MY STUFF is the most important?
I envision the Pope taking Terri Schiavo to God’s favorite places in the cosmos, as a reward for waiting so long to finish the journey. That would be nice. Hence, today’s Eyebrow Lowbrow
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