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.


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!