Archive for March, 2011

erbitux is weird 2.0

I guess I felt it coming.  The erbitux is flaring up.  Amazing how I can go from looking more or less ok, to looking like a leper over night (no offense to any lepers out there).  The latest weird side effect is a considerable amount of discharge from my eyes, which gets all matted up in my lower lashes and dries out there over night..  It takes a good long soak in the morning and a little picking to get it all out.  Yuck

Meanwhile, another round down.  Just two to go.  This one has followed the progression so far of each being a little worse than the last in terms of the pain level.  It takes meds every 4 hours or so to keep it under control.  This is a little problematic at night.  I’ve learned to more or less sleep through it, but if I wake up to pee during the night, or when I inevitably wake up in the morning, I’m in agony..  have to take meds and wait.  I could set an alarm during the night, but my sleeping has been so touch and go, that I hesitate to wake myself up!  (sleep over the last couple of days has been no trouble, however!!  I slept for about 4 hours after my tuesday treatment with benadryl, and then yesterday after getting unplugged, came home and sacked out from 1 until 6!)  Going to see if I can be a little more active today.

That’s all.  Still here.  Still trundling along.  Looking forward to seeing the back of this nonsense, and having a little energy to make stuff.

Big love.

race day

What a day.  We had a great time.  The weather was beautiful and the turn out was amazing (7800 participants all told).  Hill and Em managed to run the thing in a very impressive 1:30, and I strolled across the line 45 minutes later at around 2:15.  Lauren and Ben registered a little too late to do the 15k but did a 1.7 mile walk in the morning, and then Lauren joined me at around mile 5 to walk the remainder with me..  AS did the lovely Diane, my doc’s assistant, who has done SO much for us over the last several years..  Streamlining appointments, getting authorizations, fighting with the insurance company on my behalf.  We’d be lost without her!  So I wasn’t just a lonely walker off the back of the back. In point of fact, there where quite a number of runners who finished behind me!  Running!  Not sure how that happened.

Hill has sore knees.  Em wants beer.  And I have some blisters on the sole of my left foot.  Otherwise we all emerged unscathed.  My folks made us lovely panini at their place after the event.  And as soon as I’m done writing this I’ll go downstairs and make some fish cakes for dinner.  I promise a cooking video on fish cakes soon.  Tonight I may be a little tired to cook and film at the same time.

Not particularly looking forward to getting up tomorrow and going to treatment.  The weeks sure do roll around fast!  I AM however looking forward to checking another off the list..  Just two more to go after this one.  The weather is getting nicer every day in NYC, and I am so so looking forward to the end of this nonsense.

Thanks so much to everyone who donated.  We ended up with a little more than $6700. (donation line still open!!)

Off to cook.

Big love.

Clear, Ya hear?

Doc called this morning with the results of yesterday’s petscan.  All is clear.  There is no metastasis. I’m not going to die just yet.  Which is good, because I’ve got shit to do!

If you’ll excuse me, I’m actually going to go do some of it..

More soon.

Thanks for all the good mojo.

Big love.

asparagus

Instructions for making asparagus to come, but first an amusing story and a little advice for nyc cyclists.

Yesterday morning on her way to school, riding down central park west, a police car pulled over to the side of the road in front of Hillary and a fellow rider, without the employment of lights, a siren, or even a turn signal.  Perhaps it was an emergency donut stop.  Hard to know.  When hill began to ride around the stopped car she was met with flailing arms and the shouted instruction to STOP.  Hill had been riding down the street as normal, sticking to the right side, far enough from parked cars to avoid getting doored, etc.  She had not run any red lights (more on that shortly), or done anything else she could think of to warrant being pulled over.

“what seems to be the officer, problem?”

“You need to be riding over in the bike lane!”

I should pause here to explain to folks who aren’t familiar with central park west, that there IS a bike lane.  It is a one way bike lane headed north, on the north bound side of that avenue.  Hill was traveling south.

Hill explained the idiocy of his request quite patiently and diplomatically.  Pointing out that to ride south in the bike lane would be, first and foremost, illegal!  but also that it would be incredibly dangerous, to ride into oncoming bike, AND car traffic (especially given that the speed limit on central park west goes un-enforced).  Further more, she explained to the officer, bicycles are not confined to bike lanes.  They are, in fact, allowed anywhere that cars are in the city with the exception of some bridges, tunnels, and highways.

The officer mumbled something about upcoming changes to the bike path that he had heard something about, and the fact that there was a bike lane on columbus, and that he could really use a donut and some coffee, and finally let her off with a warning.  A WARNING!!!!  for what!??  Riding a bike legally?  Naturally Hill rode away from this encounter fuming (and late for an appointment).

We have heard from quite a number of friends who have been pulled over recently for red light violations.  There was even a NYtimes piece in the paper this morning about a couple of officers who were making the rounds to apologize one by one to a group of riders that they had caught in a speed trap in central park, at the bottom of a big hill.  They were going 25 miles an hour.  This is the speed limit that is set for cars in the park, but apparently, in a 2o year old parks regulation guide, bikes are limited to 15 mph.  (most of us could run that fast if we were being chased by something scary!).

What on earth does all of this mean?  I don’t know for sure, but it is my distinct sense that there has been a mandate passed around the NYC police department to hand out more violations to cyclists.  Period.  Clearly this mandate has been stressed powerfully enough, that police officers are going out of their way to meet it.  In Hillary’s case, the officer saw a couple of cyclists, and figured they MUST be doing something wrong, but was so completely uneducated on the rules regarding cyclists, that he was unable to come up with anything.  To his credit, he backed down, instead of pulling some sort of power trip and writing her a summons for not having a bell on her bike (or maybe he just didn’t know that it was a violation not to have one!)

What to do?  There are those of us who miss the good old days, when we were a select few renegade cowboy cyclists who flew under the radar and could do whatever we pleased, because we were invisible, insignificant to the cops.  This was the New York that I arrived in some 15 years ago.  No one paid any attention to a guy on a bike, and without your head on a swivel it was easy to end up under a bus.  I loved riding in that NYC, but it wasn’t a version of the city that particularly encouraged cycling as means of transportation.  We all had to know that with increased infrastructure and increased ridership, would come increased legislation, and increased enforcement.  That has clearly come to a head.  There is a small but very vocal percentage of the population who are vehemently against the bike lanes.  There are pedestrians that complain vociferously about renegade cyclists.  It is my hunch that the police department is cracking down in order to show that they are doing something about this problem.  The effect on us cyclists however is akin to what it would feel like to pedestrians if suddenly the police started handing out tickets for jay walking.

But this is my advice.  This is my plea, to all NYC commuters.  Suck up and deal.  Ride conservatively for a while.  Avoid red light violations (they’re very pricey).  Be polite.. courteous.  If you ARE pulled over for something that isn’t illegal, stay calm and explain the situation so that the officer may piece by piece learn the law as it pertains to people on bicycles.  I strongly believe that this is something that will blow over.  It is the flavor of the month at the NYPD, and it will get old.  For the time being we all need to just turn sideways and let it blow by.  In the mean time, we can be pleased that ridership in the city is growing so fast that it is being noticed!

Now.  On to important things.  This one is for Scott.  Asparagus season is almost on us.  In some parts of the country, I’m sure it has already arrived.  Last summer I came up with a way of serving it that I really like.  Asparagus is lovely just steamed with a bit of butter melted on it..  some salt and pepper, or even with hollandaise sauce, but this is a less rich, more refreshing type of preparation.   Easy easy.

Blanch the asparagus until it is fork tender.  Err on the side of al dente.  Immediately shock it in an ice bath.  This will stop the cooking and retain the beautiful bright green of the stuff.  Once you’ve pulled it from the ice bath and dried it off, toss it in a bowl with roughly equal parts of olive oil and sherry vinegar.  A little bit of mashed up garlic.  A goodly amount of lemon rind..  Use a vegetable peeler to slice off thin strips of lemon peel and then julienne them until they are skinny little strands.  Salt.  Pepper.  And finally, just a tiny dab of whole grain mustard.  Toss it all together and let it sit.  You can prepare this an hour or so before you eat.  It will NOT suffer.  Rather, it will just keep getting better, as the asparagus slightly pickles.   Try it.  Like the spinach salad that I posted ages ago, this one is much more than the sum of its parts.  You could serve it for instance with a nice big bowl of orange fish pasta!  Enjoy.

As for my state of health:  The strange un accounted for pain that I’ve been having the last bunch of rounds has continued.  This round it lasted until yesterday.  A record.  Today, finally, it’s not so bad.  It’ll still be a day or so before I feel well enough to do a little work on my bike, however.  I pushed the erbitux treatment from monday until yesterday, because monday’s weather was dreadful.  Yesterday on the other hand was so nice that I walked all the way home from treatment (blissed out on benadryl).  A beautiful walk through central park.  My doc, announced yesterday in a sort of abrupt way that he wanted to do a petscan as soon as possible.  I’m scheduled for tomorrow.  (“no vigorous exercise the day before or the morning of”  “don’t worry, I won’t”).  This, naturally is a little scary.  From now on, petscans will be how we gauge my state of health.  It’s pretty simple.  The cancer metastasizes and shows up as tumors in new and interesting parts of my body, or it doesn’t.  I’m a little troubled that he wants one during treatment.  I mean, if anything has developed DURING brutal chemotherapy, my guess is that I’m a dead man.  It would have to be one mean and tenacious cancer to actually DEVELOP during the sort of beating that I’m taking at the moment. The upside, of course, is that I could walk away from these last three treatment cycles!! (“well shit, doc.  Clearly it’s not working!”)  I don’t think that will be the case.  My petscan at the beginning of treatment was clear, and unless I truly am in BIG trouble, nothing will have developed during a period when I’m being bombarded with cancer killing drugs.  Still, just the scheduling of the test provokes some anxiety and gear turning.  Please do whatever mojo you do for me tomorrow.

Big love.

Stay calm.

closer and closer

Another round down.  Just three to go.  Looking a little more like an alien after each.  This was another tough one.  The pain is just not letting up.  I’m having a lot of trouble getting any decent sleep.  The erbitux has finally started to attack my toe and finger nails (this was a threat from the start.. you can google images if you want to gross yourself out!).  I’m a little afraid of what this’ll mean for the 15k.  I’m sure I’ll be fine.

I HAVE managed to go and hear music the last couple of nights.  Wednesday was the third of my brother’s Burgundy Stain Sessions at le Poisson Rouge.  They have been great shows.  This last one featured Martha Wainwright, Dawn landes, Tegan and Sara, Chocolate Genius, Elysian Fields, and David Thomas Broughton.  My brother, Thomas, has some mighty talented friends.  Here’s a little video I shot of Sara.

Then, last night, Chocolate Genius (Marc Anthony Thompson), played a show at the same venue. Thomas can trace almost all of his musical connections back to Marc. Years ago he and I went to hear Marc play. Thomas got up the courage after the show to introduce himself. Said he was a keyboardist and would love to play with Marc. A week later Marc called him and said that he was playing Joe’s Pub, and would Thomas like to sit in. He’d never heard Thomas play a note. It was through Marc that Thomas then met Oren Bloedow, of Elysian Fields, and the incredible Dougie Bowne, Marc Ribot, etc.. Marc writes beautiful songs.

Much more of Marc on Vimeo

It’ll sound like a strange thing to say, but to some degree I’m dreading the end of treatment.  On the one hand, it can’t really come soon enough.  I’m sick of hurting.  Sick of loosing every other week (at least!). Sick of being jabbed with needles and not sleeping well and mouth sores and numb hands and etc..   But I’m pretty afraid of what comes next.  I guess I’ve said it before, but there’s no real way for them to measure the success of this course of treatment.  I’ll finish 6 months of abuse no wiser than when it started.  Of course the hope is that they weren’t treating anything at all this whole time..  that the cancer was successfully removed surgically.  Problem is that there’s just no way to know.  It’ll just be a waiting game.  Checking frequently with Pet scans to see if any tumors have developed.  There’s a degree of uncertainty to the whole thing that I think will be pretty stressful to live with.  Last time I went through this stuff, they pronounced me cured!  Sent me on my way.   “Have a nice life!”   This time it’s not so clear.  This time it affects all the decisions I make from now on.  It’s all pretty daunting.

It’s going to be 70 degrees in NYC today.  I’ll have a nice walk with my friend Brenden, and then lunch out-doors, and then, hopefully get some sleep in the afternoon before getting together with a bunch of old students for dinner.

How I generally check for size.

Well.  I had the best intentions.  Didn’t really ever manage to get it started today, though.  The first problem was that I slept in..  until 8:00.. BUT NO!!!  9:00 with the time change!!!   BLAST.  There goes the day. More than that though, I just felt a little tired.  The frame is close to done, but there are lots of little details to take care of still..  bridges, bosses, braze ons of various descriptions, seat clamp, canti cable stop, etc..  A good solid day of work still.  Oh well.  Ran out of steam..  Think I might take a nap.

Dreading tomorrow.  That may be part of it as well.  Dread takes a lot of energy.

Pretty excited about this bike, though!  Always fun to be making something for yourself.  Most fun, though is to imagine being well enough to ride, and to imagine the cool rides I’ll do with my lovely wife (and anyone else who wants to join us.)  And as you can see, it fits perfect!

Ok.  Going to get a little rest.

Big love to you all, and another round of thank yous to everyone donating money to the 15K.  We’re NEARLY at $5k!

progress report

I had a pretty productive day out in the shop on thursday.  Got all the tubes mitered and put dropouts on the end of the chainstays.  (also brazed up the fork crown/steerer because it was something nice and quiet to do while my brother napped upstairs).  Managed to work for about 5 hours all told.  Was pretty tired by the end of it, to be honest.  Yesterday was less impressive.  Just got an hour or so in, but managed to prepare all the lugs and do a dry run of the set up.  Everything is as it should be.  Once I finish this cup of coffee I’ll go out and take the whole thing apart, clean it up, and then flux everything up and put it back in the fixture.  Ready to braze!  That was a little more than I could imagine doing yesterday, but I think that with the right music, today should go pretty well.  My good friend Caroline is going to come over and hang out with me while I work.  It’s good to have moral support!  I should still be able to have something that looks like a bike by the end of the weekend.

My hands have been pretty good.  No numbness to speak of..  50 degree days are helping.  The herbitux has definitely made my skin pretty raw and delicate though.  And after 6 months without working, my hands are feeling it!

These last two weeks have felt long.  I think just because I didn’t loose so many days to the narcotic dayz that comes with the pain I’ve been having.  One less day of treatment really made a difference.  It seems as though the pain is caused by a synergistic effect of the oxaliplatin + luekovorin.  Whoa..  chemo brain.. I think I’ve already written about this.  Anyway.  One less day of leukovorin during the last round seems to have been the key to the pain not kicking in hard on day 3.  Not particularly looking forward to going in on monday for a full round again.  After feeling so well these last few days, it’ll be particularly discouraging to go in and have my ass handed to me.  Then again..  maybe this break has given me time to recover enough that my wrecked bod will be able to handle it a little better.  With this stuff it’s all speculation.  We’ll see.

BTW, how cook this?

All this shiny campagnolo stuff came in the mail for me recently (not that surprising, actually.  I ordered it all).  I’ve been working on the design for a touring bike for ME.  To match Hill’s.  It’s going to be hard to go touring with her if I don’t have a bike for it.  Also, after about 6 months of not really thinking much about the shop, and not even being really clear that building bikes was a sane thing to try to keep doing, I’m ITCHING to be back at work.  (I guess that’s what a slightly lowered dose of chemo will do for you!  I’ve been on fire the last couple of days..  For those of you who are following along, my 5 mile walk turned out to be a little longer even, and right on pace to do the 15k in 2:18, which will bring me in right under the wire.  We’re up to nearly $3700!)

Those of you who don’t speak bike, or particularly care about bikes (should have your heads examined), may want to tune out for the next paragraph..  you can start reading again where it says my hands (in red for your convenience..)

I had a bit of a design dilemma with this one.  Or maybe it was more that I was stuck between two bikes that I’d like to build.  My initial thought was to build a sort of thunderfucker inspired touring rig.  An adventure touring bike.  Something with disk brakes and room for 2+ inch cross country tires..  you know.. just in case.  But I was also pretty tempted by the campy athena group, which for a modern group is awfully nice looking.  Especially after Campy caught on and started to offer it with silver brake lever shifters (originally only available in black, I believe, which left us scratching our heads a bit about the concerted effort they made to make the rest of the components silver!!).  BUT campy 11 speed isn’t really compatible with any rear disk hubs that I could think of, and the whole thing got a little muddled.  Also, if the point was to go touring with Hill..  why would I need a bike that could go places hers couldn’t.  Hmm..  In the end, I’ve decided to use the last remaining set of paramount lugs to build a classy feeling touring rig with 26″ wheels like Hill’s, and a very classic looking but modern set of components.  If you are still reading this, you are a bonafide geek.

My hands aren’t really what I’m used to them being.  A little numb all the time.  They’ve lost some dexterity for sure.  It’s a bit frightening for me, but I’ve been through it before, and they DID come back after treatment ended.  The numbness gets pretty severe if my hands get cold.  The shop is not warm.  So we’ll see how it goes.  I’ve got 4 good days left before another round of treatment, and on balance, I’m feeling pretty well.  I’m going to see if I can make the most of it.

We also don’t really know how long it’ll be before I’m allowed to ride a bike with a seat.  Or how it will feel!  There have been some major changes in the region of my whatsis, and I’m really not sure what sitting in the saddle will feel like.  It is our goal, however, to try and find a way to do a little bike touring at the end of the summer.

Finally, thanks so much to all of you who have donated money to this cancer walk/run deal.  It’s honestly pretty moving to watch the dollars pile up, and to know that they’ll go to helping people catch this stuff early, and treat it effectively.

Big love.

Feeling.. well.. a little punchy!

I woke up this morning, after a good night’s sleep, and actually feel pretty good.  Best I’ve felt in 5 weeks or so!  Hot dog.  No treatment until next monday.  I might actually get some good days out of this week.  After our morning exercises (see above), putney and I are going to take a long walk.  5 miles or so..  just to make sure that the upcoming 15k isn’t pure insanity.

BTW!!!  You guys are rock stars.  After just one day, we’re over $3K!!  Too many beautiful!

Later in the day I might even venture out into the shop for a bit..  See if I can remember how all those tools work.  (or maybe I’ll come home from that bloody walk and sleep for the rest of the day!  there’s no telling.)

Big love to you all.

Team WAS FAST BOY runs/walks for a cure.

This one is a bit of a plug, folks.  On march 27th, Emily and Hill and I will be running (well..  I’ll be walking), in a 15k Colon Cancer run/walk for a cure.  It’s an event hosted by the Colon Cancer Challenge Foundation.

It’ll be the farthest that Hill has ever run, and she’s been training for it.  (Em has done a few marathons..  she’s ready.)
It’ll be by far the longest I’ve traveled in any way in about six months..  I have been training for it by lying on my back on pain meds.  Should be pretty interesting.  There is also a little 1.7k walk or something, but I felt that 15k was a bit more of a statement.  Happily, it lands on the final day of a two week treatment round, so I’ll be feeling about as well as I can!

Over the last couple of years, I, we, have been frankly overwhelmed by the kind of support that you out there have offered.  People stop by with coffee..  and bourbon.  And once an envelope of cash, just left anonymously in our mailbox (with some cookies). You’ve bought photos from me on Etsy, which has actually provided me with some income during a time when I’m not able to work.  Mostly though there has just been an incredible cheering section throughout this process.  I am gratified, and honored, and humbled, and many other things.  The truth is, though, that there are boat loads of people going through exactly what I am, but not writing about it.   People who are NOT in the rather lucky position that I am of having such support from family, wife, dog, friends, complete strangers.  During my treatment over the last couple years, I’ve had overlap with some of these folks.  A good number of them aren’t around anymore.  It’s heartbreaking.  There is precious little funding out there for research, and let’s face it.. colon cancer isn’t really one of the glamorous ones!  If you’re up for it, please support these folks.  Do it within your means.  You are a big group of people, and have broad shoulders.  Every little bit will count.  Thank you so much.  Go here.

In other news..  My week of reprieve has turned out to be a bit of a bummer so far.  I think that whatever it was that finally built up enough to drive my white counts down so low, also managed to take most of the stuffing out of me.  I’ve been pretty tired.  Spent yesterday just resting in bed.  I’m hoping that after my erbitux top up on monday, a little energy starts to return.  I am planning to build myself a touring bike to go with Hill’s (did I already say that..  chemo brain), so that we can do some touring together at the end of the summer.  (Timmy, Chris and little girl Pearl, Cory, Christopher, Kendall, Guy…   get ready).  With the neuropathy, my possible work days are pretty limited, and my dexterity isn’t what I’m used to, but it won’t matter much building a bike for myself!  No clients’ bikes will suffer from my current condition.  It’ll be a way to ease myself back into the shop.  Fingers crossed.

Big love!