Archive for January, 2009

Three day frame set.

The last couple of weeks were going to serve as a benchmark for what to expect over the next 4 or 5 months.  Last time I wrote I was headed in to get the pump pulled and was free for the next ten days.  By last weekend I was starting to feel all right.  It definitely took a little longer than I would have liked.  I was really hoping to be able to work again by friday.  No such luck.  Then, monday morning I woke up with a cold.  It got progressively worse as the week went on.  By wednesday I could only whisper.  Pretty amusing.  So much for that benchmark.  With any luck, that’s NOT how it’ll go each cycle.  I’m at the docs now..  tube in chest, getting my infusion.  Let another cycle begin.  It’ll be a long day, so I brought my laptop to try and catch up on some office work..  (Or maybe just watch a movie).  My cold is hanging on still, but only by a thread.  Just in time!  I’m hoping that it’s gone entirely by the time the chemo effects wear off, and for a change I can feel GOOD for a few days.  waa waa.

Despite the cold, I was wonderfully productive over the last few days.  I managed a 5 hour work day on friday.. 8 hours on saturday.. and yesterday I spent a whopping ten hours in the shop.  I came in exhausted and happy.  I managed, in those three days, to build an entire frame set.  A personal record (though maybe not in terms of total hours).  YAY.  This one will be a lot like TF2, but with a straight blade fork, and a slightly different build.  I left the shop in shambles.  It’ll have to wait for me that way.

Billy has taken to spending Sundays in my kitchen.  Fine by me.  I can just put my head down in the shop and work, and come in to a warm meal. Yesterday he made some outstanding chile verde, with fresh dinner rolls (and a couple types of cookies).  Bill has been an outstanding help through all this.  Available any time he’s needed.  What a thing to have friends!

Pretty sick of this shit.

Hi.

I’m on day three of a treatment cycle.  I go in this morning and get the pump removed, and don’t have to go back for 10 days.  I’m having a hard time believing that this is the pattern I’ll be looking at for the next 5 months.  I’m trying to be tough about it, but it SUCKS.

It goes like this:  I go in on monday morning and get oxaliplatin (this is the stuff that makes my hands go all pins and needles if I touch anything colder than room temperature.. pretty funny the first couple times, then just annoying as hell..  try and cut an onion from the fridge, and your hand goes numb.  Great), then a bag of avastin, then a big syringe full of 5FU, followed by a bag of lukovorin.  The whole thing took 6 hours this time.  Then he sends me home with this pump (more 5FU).  I go back in the next day to get another syringe of 5FU and get topped up with lukovorin.  Sent home again with the pump.  Then on wednesday, today, I get to go back in and have the thing removed, go home and rest.

My pump is faulty.  The folks at the hotline think that the sensor is going.  So every now and then an alarm goes off telling me..  “Oh god!!!  there’s nothing attached to me!!  there’s nothing to pump!” Meanwhile, the bloody thing can tell me exactly how much is left in the reservoir.  I’d love to be able to talk to it..  “ok..  so you’re saying there’s no reservoir attached to you?”   “Correct.  Nothing there.”  “BUT, that it has 54.3 milliliters left in it?”  “You got it.  Precisely.”  “Not 54.2?”  “Oh no..  54.3, on the nose”  “Are you stupid?”  “What do you mean?”  “nevermind…”

The stuff makes me headachey, nauseous, and just plain tired.  Can’t really do anything, but can’t really fall asleep either.  A lot of laying around being uncomfortable.  I’m hoping that the recovery goes quickly this time around..  Hoping that I get a sense of what kind of pattern I’m looking at going forward.  Can I be back in the shop working by friday?  saturday? It’d just be nice to know what I can count on.

On a positive note, the pain from the surgery is finally under control.  I didn’t take any pain killers at all yesterday, and didn’t suffer for it.  What a relief.  Progress!

Also, Putney is doing fine.  She’s a little pissed about the lack of frisbee.. or anything fun really, but she’s being a good sport, and is pretty oblivious to any pain.  Dogs are tough.

And no, I don’t keep my onions in the fridge.  Only if there’s a half left over from the night before.

Last night.

Last night was the first night since I got her that I have spent in my house without Putney.  I guess I haven’t mentioned Putney much here on the blog.  She’s my dog and the subject of probably half my pictures on flickr.  She spent the night at the vet getting sewn up.

Yesterday as we were finishing up a little frisbee game (she’s a pretty astonishing frisbee dog ) I noticed a little fresh blood on the ground.  Wasn’t mine..  didn’t see anything on her..  Then she picked up a back paw and it started to gush.  We were about a mile away from home and she had an enormous cut on her foot.  Shit.  Nearly 60 pounds of dog.  I wasn’t going to be able to carry her home.  Not a chance that a taxi would have taken us.  “sorry pup..  you’ll have to be brave..  let’s trot home and get you cleaned up”  “Ok dad.”  She was very stoic.  Ran all the way home with me, and then very patiently let me clean her foot and get her bandaged up.  What a dog.

I took her to the vet in the afternoon and he said he could work on her after office hours and that she’d have to spend the night.  I’ve got an appointment for 9:30 to go pick her up.

The house is not the same when she’s not around.  It’ll be a big relief to see her.  I feel like a sap, but that little doggy has been through a lot with me, and is more of a comfort than I can put in words.  Pictures on flickr as soon as I get her home.

hi

Mostly just wanted to write an upbeat post.

I’ve been in the shop the last few days.  Working slowly and deliberately with full knowledge that if I get so much as a scrape, my mom and doc will string me up.  It has felt wonderful.  I had the main triangle of Hill’s new commuter/cargo bike all mitered up and ready to braze..  just sitting down there in the jig teasing me.  Finally got it together on Sunday.  Went out yesterday and did the clean up.. put the dropouts on the chainstays.  Today it will become a frame.  Ta da.  I’m not very strong.  But I’m letting the tools do the work.  It’s a nice state to be in..  festina lente!  One of the best lessons there is.

Being off the chemo is reminding me what it feels like to be whole!  Not my old self by any measure, but glimmers of it (I was probably never really my old self, but you know what I mean).  I am managing the pain just fine.  Gradually cutting down doses of pain killers.  My head feels clear.  I’m upbeat.  All is well.  I get six more days of this before heading back in to get topped up.  My calculation is that for the next 6 months I probably get every other week.  Every day more than that is just a gift for the time being, and I’ll take it!

As I said before, for those who are interested, I will NOT be going to NAHBS.  I would prefer to wait another year, until things are clearer with my health, until it won’t interfere with my treatment schedule, and until I’ve had a productive lead in time to work on the projects I’d really like to show.  I WILL, however, be finding a way to send the assless bike.  The organizer frowns on people sharing booths and that sort of thing, but this bike is such a feel-good bike world story, that I think something might work out.  So many of the folks exhibiting helped with it’s inception..  phil wood, chris king, white industries, kirk pacenti, don ferris..  that to have it there with a little note saying “wish I could be here, see you next year.. special thanks to: etc etc..” would just be a nice thing.  I think so anyway.  I’ll keep you posted.

That seizure is already just a memory.  For a day or so afterwards, I was totally exhausted.  Like I’d run a marathon or something.  Scared too.. I had a couple of nap time nightmares about it.  Gone now.

Thanks all.

2009

Since I last wrote we’ve had Christmas and a new year.  It’s been a pretty wonderful time.  My step father has been in town from Kathmandu, my older brother and nephew got into town on new year’s eve and are staying through until tomorrow.  It has felt great to have family around, and has felt great to have Hill be a part of that family.

The combination of the avastin and the oral 5FU have left me feeling pretty flat.  No nausea, really, which is a huge relief, but no energy either.  The pins and needles in the hands have persisted to enough of a degree that I haven’t really trusted myself to work in the shop.  I have been using the time to learn some very powerful 3D CAD software (solidworks).  If I can’t actually go out into the shop and build it, at least I can model it in CAD and take a look..  see if it’s worth making once I’m able.  That’s been pretty fun.

Yesterday morning by 11:00 I was in an MRI tube having my brain scanned.  Very early yesterday morning (2:41) I had a pretty big seizure.  I’m nearly certain that it was the scariest thing I’ve lived through.  I got up during the night to use the bathroom.  I was pretty dizzy on the way there, and felt disoriented on the toilet.  After an unproductive sit, I went back to bed.. still dizzy, and lay down.  I’ve been having some chest pain associated with exertion, just as I did over the summer when I got anemic.  When I lay down in bed, my chest was tight, and sore, and I could feel my heart pounding. I must have blacked out.  I woke up convulsing and pissing myself in bed, with the lights on, and Hillary standing over me crying.  It was about 15 or 20 seconds before I could even respond to tell her I was ok (and apologize for wetting the bed..  how embarrassing).  As soon as I was able to move I went to the bathroom and puked up the contents of my stomach.  Hillary called my parents, and they were there in about 30 seconds flat.  My step father is an MD, and asked the important questions.  He called Alberto.  I went back to bed, exhausted.

The scan ruled out a bleed in the brain, and RPLS which is a pretty rare but reversible reaction to Avastin.  No one has any other specific ideas about what might have caused it.  We’re in a bit of a wait and see pattern now.  If I never have another seizure, it will be too soon.

In researching the whole thing, Alberto discovered a rare (2 in a 1000) alergy to the oral 5FU that causes bronchio spasm (the same thing that Asthmatics suffer).  He’s pretty sure that’s what’s causing the chest tightness/pain I’ve been experiencing (though not the seizure).  Needless to say, I’m off the drug.  Back to the I.V. version.  I’ll start up again in ten days.  In the mean time, I get a little break.  I need it.