Archive for October, 2010

friday

The other day in the bathtub thinking about chemotherapy, I had a brief flash of the sort of bravado that I had going into treatment the first time around.  Just a glimmer of “Bring it!”  It passed really quickly.

It’s a good thing that there was any feeling at all of being ready for it, though, because the ball is rolling again.

Today I’m going in for a pet ct.  By Monday we’ll know whether or not the cancer has taken up residence in my liver/lungs etc.. fingers crossed hard.  Next week I’ll have a port placed, and on the 15th I’ll start chemo.  I had to fight for the 15th a little.  He wanted to start on the 8th, but that would have put round two on the week of thanksgiving, instead of making that a week off.

“If we start on the 8th, the week of thanksgiving will be a chemo week.”

“so?..  I’m going to be in town”

“That’s not what I was worried about.  It’s the only holiday I celebrate..  I want to enjoy it.  I cook for a lot of people on thanksgiving..”

“someone else can do the cooking.”

I gave him the steeliest look I could muster and he relented.

So it’s all still a LITTLE way off, but it’s bearing down.  Gah.  No fun.

I’m feeling better and better.  Physically, mentally.  I have moments during the day when I’m pretty comfortable and optimistic (I’m remembering a chocolate genius break up song where he sings “I forget about you at least twice a day”) .  Other moments when the pain gets away from me a little.  Evenings are strangely difficult..  5pm seems to be a real low point.  5pm or so is when I resort to pain meds (and bourbon).  For the last 3 days, though, I haven’t needed any during the rest of the day.  Progress!  In two weeks, when the chemo starts, I’ll probably be feeling pretty good!  *holds head in hands*

I’m getting pretty excited about the Assless returning from the painter with its shiny new paint.  It’s going to have a pretty different look!  Can’t wait.  It’s been about 6 weeks since I’ve ridden a bike.  Even though that thing is a torture machine, I’m looking forward to have my range extended a little.

much better, thank you.

Just a few days later now and I’m feeling worlds better.

We had Seth and Nicole over for dinner and ate outstanding food, we hung out with Galen from the left coast, I spent a day at the pool hall, Caroline stopped by and helped me clean out my shop which had been just sitting these last 5 or 6 weeks (so sad), Marcus stopped by and dropped off some coffee.  (my buddy S.T. stopped by to show me the fancy new prison issue shoes that he’d gotten during his 30 day stay at Riker’s Island!!  with a big apology that he’d been thinking of me the whole time and felt terrible that he had no way to tell me where he was or why he wasn’t stopping by to check on me! “bro!  I got out 4 hours ago..  I came straight here, buddy.”).

I want to thank you all for your support.

Those of you writing with encouragement, it’s hard for me to even express how important your presence has been for me throughout these last years.  Telling the story of this bloody process has been a powerful tool for me in coming to terms with it all.. in understanding it.  Telling a story without an audience is just talking to yourself (and there’s been some of that too).  Knowing that I can write it down here, and that you’ll read it, is good medicine.  You’re helping me create a valuable record.  Memory is fallible, often mercifully.  I looked back through pictures yesterday and was reminded that just a month ago, I was stuck in a hospital and that just getting out of bed to walk a few steps in a hallway was a complicated process that involved organizing tubes and strategically draping hospital gowns.  There IS progress after all!!  The other day I went out in public for the better part of the day without even wearing a maxi pad!!

Those of you who dug up Megan and Nick’s donation link, it’s really above and beyond the call of duty.  It makes me feel a little awkward to receive money from you all at a time when I know that EVERYONE is stretched.  I am grateful, and I will have to just assume that you are giving within your means.  Thank you.

Ok.  That’s it for now.  Tonight I’ll make some braised lamb shanks and polenta for Katypang.  Maybe tomorrow I’ll finally put up the braising instructions that I’ve been promising!

worn out

I’ve been feeling at loss for words over the last little while.  Yet, it’s not really in the spirit of the thing if I only write when I’m feeling up-beat.

I think that the reality of my situation has begun to really sink in, and it’s leaving me feeling pretty bleak.

I shit in a bag now, and on balance I’d say I’m getting sick of it more than I’m getting used to it.  It’s an added appendage in an awkward spot and the knowledge that I’ll have it for the rest of my life is depressing.

I’m in the countdown to 6 bloody months of chemotherapy.  I’ve been through it before and it was awful.  It’s hard to know how to put lipstick on that particular pig.  Especially hard when the chemo is targeting cells that we’re not even sure exist, and where its success will be impossible to measure.

I’m still experiencing a good deal of discomfort from the surgery.  There is progress, but it is incredibly slow.  It makes it very hard to get a good night of sleep.

I am trying to take care of myself..  to relax and give my body a chance to heal (to get healthy enough for the chemo!), but am having to spend an inordinate amount of time on the phone with the insurance company trying to make the case, with little success, that a $1700 reimbursement for a $25K surgery is inadequate. I’ll detail the absurdity of that situation in a separate post.

My family is dealing with the situation admirably, but it’s quite clear that everyone is feeling the weight, and at a time of year when some measure of cheer is necessary to combat quickly shortening days, no one seems to be able to muster it.

I’m worn out.

Being proactive, finding solutions, addressing problems..  It all takes energy, and over the last handful of days I simply haven’t had it.

I can write just as long a list of the the things that I have to be grateful for.. of the reasons that my situation ain’t so bad.  The fact that we have laundry in our house! (over the last few weeks, doing the laundry at a laundromat would have been a full time job at the rate I was soaking through maxi pads!).  The fact that some school mates and professors of Hill’s put enough money on a gift card to our supermarket that we won’t have to pay for groceries until thanksgiving!  But as they say, every silver lining has a cloud.  Lately I’ve been aware of the clouds.  Fuck.

It’ll pass.

The Assless bike made it’s way back a few days ago from a gallery down in Virginia.  With a little help from Ed, I got it all taken apart and packed up to go to the painter for a face lift.  I have trouble sitting on a foam donut at the moment..  a bike seat isn’t even a question.  So it’s back to the assless for the time being.  When I built it, I was so eager to get on and ride the thing, that I just rattle canned it and went.  This time, I’ve got a little more time on my hands..  I think it’ll be a couple of weeks still before I’ve got the flexibility/range of motion in the whiffs to be able to ride the thing.  So.  Look out for a fancy new paint job on the assless.  Hot dog!

chicken soup with rice

This is one that I make whenever Hill or I are feeling under the weather or generally in need of some clean simple food.  (served here with some spinach salad and some bok choy with black bean sauce)

Our local super market has packages of murray’s free range chicken soup bones.  It’s just all the stuff that’s left when they butcher up the whole chickens to turn them into boneless/skinless breasts and etc..  49 cents a pound or something, and perfect for making stock.  You can also do it with a quartered up whole chicken, but you’ll end up with quite a lot more meat than you need (no problem!  Save it to make some flautas or something!)

  • Chicken
  • Carrots
  • Celery
  • Onions
  • Ginger
  • Garlic
  • Thai Chile
  • Scallions
  • Jasmine Rice

Put a little oil in the bottom of a nice big dutch oven and heat over medium high heat.  Toss in your bits of chicken and lightly pan roast them for a few minutes.  Add a couple of onions cut into sixths, two or three large carrots peeled and cut into inch long pieces, 3 or 4 big stalks of celery also cut into inches.  Add a few whole garlic cloves and a couple of big chunks of peeled ginger, and one or two thai chiles cut in half lengthwise.  Keep everything moving until it starts to release a nice smell.  Add water to cover.  If you have water heating in a kettle in the meantime, it’ll save you a lot of time bringing everything up to a boil.  Once the whole mess is boiling, reduce the heat to a low low simmer..   practically just a steep!  It may take a while to get the heat just right, but it’s my feeling that the stock ends up much better if you never boil it HARD.  Just hot enough that the surface ripples a little.  Skim the scum off the top (once usually does it!  but you may have to skim again later).

Leave it!  Let it sit for an hour and a half or so. Use this method to make chicken stock anytime you need it.  If you leave out the ginger and thai chile, you’ll have a very neutral and versatile stock.

In the mean time, make a pot of jasmine, or other long grain white rice (not basmati!  that’ll just taste weird).

Peel and thinly slice an onion.

Peel and thinly slice some garlic cloves (nice thin discs).

Peel and julienne some ginger.

Coarsely chop scallions.

When the stock is done, strain it into a big bowl using a colander (don’t make the mistake of straining it through the colander and straight down the drain!!!   This is easier to do than you think!  Usually you keep what goes in the colander instead of what goes through it, and force of habit is strong!!!).  When the chicken bones have cooled enough, pick off the meat and reserve.  Toss everything else!  The good stuff is all in the stock

You’re ready to assemble!

Back in the Dutch oven, heat a little oil (vegetable oil, and a little splash of toasted sesame).  Toss in garlic and ginger followed quickly by the sliced onion.  Sweat these for just a few moments and then add the chicken.  Add the stock and soy sauce to taste, bring it all up to heat, and then just let it sit for 15 minutes or so.

Prepare bowls with rice and chopped scallion.  Ladle soup over the top and eat!

I’m sorry for radio silence

I’ve been busy working out my wardrobe.  Well.  That’s not entirely true.  But we might as well discuss it.

The stoma is just above my waistline..  Just above the spot that my pants tend to hit.  Which means that the bag hangs down below.  Or, in other words, the waistband of my pants hits about mid bag.  So.  If I want the bag to be inside my pants (and this is nice to do sometimes, to avoid scaring small children and generally grossing people out..  my first delivery of bags came, and due to an error in product number, they’re all clear!  the sort they use while you’re in the hospital to better monitor what’s going on..) I can’t hold my pants up with a belt.  Nor can I wear pants that are tight enough to stay up on their own.  If I do, I’ll constrict half the bag!  So, SUSPENDERS obviously!  I’ve always loved suspenders.  But I’ve never quite felt I could get away with wearing them..  There was always also the small problem with suspenders that if you wear a shirt OVER them, and have to get your pants down in a hurry, you can be in REAL trouble.  I no longer have any compelling reason to EVER get my pants down in a hurry!!!* As long as my pants have a fly, I’m AOK.  So these days I’m rockin’ big pants and suspenders.  Since I’m about 10 lbs lighter than I was before surgery (and more than 20 lbs lighter than I was when I finished chemo the last time!!), all my pants are big pants at the moment.  As I fatten up again in preparation for the next round of chemo, I may need to get some more pants. I’m also wearing maxi pads!  The perineal incision continues to drain, and without something in there to catch it, I’d soak through a pair of pants in no time.  The great thing about maxi pads is that they have a sticky side!  So unlike gauze pads or something similarly medical, I can stick them strategically to the inside of my pants and get on with my day.

When I last wrote I was dealing with an infection.  It seems to have cleared up with a week long course of antibiotics.  I saw the surgeon yesterday, and he was very pleased with how things are going.  My stomach incision is pretty entirely healed!   The scar is still quite red, but there’s no pain.  There’s no pain at the stoma either.  My ass is taking forever, though.  He explained that this wasn’t that unusual.  A lot of the tissue that they pieced back together there, after removing all that they removed, was tissue that had been heavily irradiated two years ago in preparation for my original surgery.  He said that tissue that’s been exposed to so much radiation can take MUCH longer to heal.  The bright side of this is that they can’t start the chemo until I’m well healed.  The surgeon said yesterday that he felt we needed to wait at least 3 or 4 more weeks.  Music to my ears!  On the less bright side, I continue to be in quite a lot of pain with it.  Sitting is uncomfortable.  Lying down is ok, but only for so long.  My possible lying down positions are limited by concerns like the bag, and the flexibility of the ass incision..  I’m waking up a lot in the night.

My spirits are good.  Or, at any rate, I’m not depressed.  I AM a little lost these days.  Bored, but not finding the right thing to keep me occupied.  During the spring and summer things felt like they were headed in an exciting direction for me.  I felt as though I was really hitting my stride with the bikes.  I had made a string of bikes that to me, in subtle ways, were really getting to be pretty beautiful.  It was feeling as though it was time to get a bigger space, to put myself in a position to be able to up production.  I had a few ideas developing around the fenders, and etc..  It had always been my attitude that while recurrence was a possibility for me, I was unwilling to allow it to keep me from doing daring things.  I wasn’t going to let it scare me from my ambitions.  Now that I HAVE recurred, however, the equation has had to change a little.  Particularly since the cancer has made it into the lymph system, the question is no longer if, but when will I recur, and how bad will it be, and how involved will treatment be. I visited my oncologist yesterday as well, and he informed me that I’d be getting a port again (obviously), and that this one would stay in for 5 years minimum.  It’s a new game.  Between healing, and the sort of unconscious mental work I’m doing coming to terms with the new rules, I’m pretty tired.

The weather here in NYC has been beautiful.  Cool and mostly dry.  My two out of town brothers came to visit over the weekend, and it gave me quite a boost.  It’s a good time of year to eat!  I guess I’ll probably, FINALLY, get around to writing directions for braising weird cuts of meat!

*in addition to having my ass sewn shut, my penis doesn’t seem to get hard.  The doctors ask about it.

“have you had an erection?”

“nope”

“have you tried?”

“Um.. yeah.”

“nothing?”

“not a thing..”

“not even when you wake up in the morning?”

“no doc..  not even then”

Apparently after this sort of surgery, it’s perfectly normal to have no erectile function for a while whether or NOT you’re ever going to get it back..  Just local trauma.  From the nature of their questioning, though, I think I may be getting close to the time when it would be coming back if it was going to..   Fingers crossed.  Erections are fun!

taxi cabs

So yesterday turned out to really suck.

I was scheduled to meet with my oncologist at 1:00 to discuss the schedule for treatment.  This wasn’t a conversation I was very excited about.  We had talked about starting chemo a month or so after surgery.  Weirdly, it’s already two weeks after surgery now (!), and I can do the math!  Before chemo begins, I need to have another port put in.  Oh boy.

I woke up feeling not quite right, however.  And by noon, when it was time to think about heading out to the appointment, I felt really crappy.  I called the office.

“Dianne?”

“Daniel..  hi” Daniel is my first name.  Ezra is my middle.  I’ve been Ezra since I was about 2.  Dianne calls me Daniel just because she likes to.

“I have some brand new very acute pain at specific spot on my pereneal incision, a swollen gland in the groin, and a fever of 102.  I assume the doc will want me on antibiotics.  You suppose we could call that in, and I could come visit you another day?”

“Ah.  I’ll check with the Doctor P.”

I knew that there was no way I was going to get away with it.  Thought it was worth a try, though.  I was feeling so crappy that I wasn’t even able to get all that excited about the mailman showing up with my new camera (!!!!).  I’d had chills for the last several hours, and just wanted to get under the covers with the dog and warm up.

No such luck.

“Daniel?  The doctor says that he absolutely needs to see you..  and he called the surgeon, who wants to see you as well..  at 1:00, could you just come here first, and then plan to go there?”  It was 12:30 at this point.  So that’s how our day in taxi cabs began..  fast breaking.

To shorten a long story, I went to see and was examined by both docs.  Both agreed that I probably had some sort of infection and that I should be on meds.  The surgeon, however, wanted a CTscan, just to be sure that there wasn’t some sort of serious abscess that would need to be drained (this, he explained, would mean being re-admitted to the hospital, put on IV antibiotics, and stuck with a big needle.  I’ll pass).  So, off we went again, in our third cab of the day, to east river medical center for a scan where we waited for two hours (an hour to get insurance authorization, and then an hour to drink up the contrast solution), and finally by 5:00 we were in cab #4 headed back home.

The result?  A course of antibiotics. Can’t help but feel that the 4 cabs were unnecessary. Can’t help feeling a little miffed that instead of being snuggled in bed, I had spent the day sitting!  Sitting is not my best sport at the moment.

Better luck today.

gnocchi

Last night we had gnocchi for dinner.  I make them frequently, but last night’s were particularly good and I decided that I should probably put up some directions!

I should start by saying that my approach to gnocchi isn’t really the classic one, but what I’ve landed on is pretty devine.  I always pan fry them on the way to the plate.  The truth is that standard gnocchi are a sort of gummy affair that I don’t really care for (this goes triply for the store bought variety that are made to put up with rough handling and REALLY suffer for it).  Pan fried, however, they become an absolute delicacy, and a tremendous way to eat up potatoes!  I also don’t roll mine off the back of a fork to give them the shape they’re named for (gnocchi=knuckles).

The technique seems daunting and a little messy, and I think most people assume it’s too much work.  Not at all.  After a few times, you’ll find that you can do it quickly and efficiently while you’re doing the prep work for whatever else you’re making.

Like this!

You’ll need:

Russet potatoes

All purpose flour

Egg

Cover the potatoes (whole) with water in a big pot, and bring the water to a boil.  Lower the temperature a little and let them boil until fork tender, about 45 minutes.

Remove from the water and using a potato ricer, or a sieve and the back of a spoon, rice the potatoes onto a clean dry work surface.  Cover the riced potato with a thin layer of flour.  (“EzRA!!!   how much!!”  “don’t panic.. we will discuss”)

Once the potato has cooled just a little, fold the flour and potato together and make a mound with a well in the center.  Crack the egg into the well, and whisk it with a fork, slowly incorporating dry ingredients until the fork stops being useful.  Switch to your hands, and GENTLY knead the mixture until all the ingredients are evenly mixed.  IMPORTANT!  You are not making bread here.  You are kneading simply to mix the ingredients, not to develop the gluten content!!  That’s it!  Done.

Now.  Let’s discuss amounts.  The job of the flour in gnocchi is to hold the little buggers together.  Too little flour, and they’ll fall apart when you boil them and you’ll be left with VERY thin potato soup.  Too much flour, however, and they’ll be gummy and gross, and tast like..  well.. flour.  I am going to refuse in this case to give you amounts, because it’s much better just to develop an intuitive sense for it, and it’s way sexier to cook without a bunch of measuring cups and scales on your counter.  Further more, potatoes come in all sorts of sizes, and it’s my guess that the moisture content from one to another will vary etc..  so to say x amount of flour per potato wouldn’t really get to the heart of it.

So here’s how you should do it.  Have a big pot of boiling water water ready and waiting for you.  Follow the instructions above using as little flour as you think you’ll be able to get away with.  Once you’ve got your big ball of gnocchi dough, pinch off a piece, shape it into a little pillow, and toss it into the boiling water.  If it disappears in the boiling water, you used too little flour.  If it’s good, it’ll stay whole and rise to the top when it’s done.  Pull it out and taste it.  Easy!  If you had too little flour, knead in a little more and try again.  Using this method, you can avoid loosing an entire batch!  Test first!

Once you’ve established that your dough is good, prepare a BIG ice bath (as discussed here).  Divide your ball of dough into 4 manageable pieces.  Working in batches on a lightly floured surface, roll a ball out into a long snake, about a half inch in diameter and then cut/pinch off individual gnocchi using the edge of a wooden spatula.  Immediately toss the batch into boiling water.  When the gnocchi rise to the top, pull them out with a sieve and deposit them in the ice bath.  Repeat until all the gnocchi are done.  When you’re quite sure that they’ve all cooled, strain them in a colander, and toss with a splash of oil.

The wonderful thing about this ice bath technique for making gnocchi is that you have them now in a suspended state.  They’re ready to go the moment you want to fire them, but won’t suffer by sitting around.  You can, in fact, put them in the fridge and use them tomorrow!  If you decide that you want to eat them the classic way, simply boiled, all you need to do is return them to boiling water moments before you want to serve them.  This makes the timing a very relaxed business.

We eat them in a number of different ways.  Often with a nice braised lamb ragu and fresh mint!  My favorite way lately, however is just pan fried in butter and tossed with a little bit of sage.  Perfect.

Over medium/high heat, cover the bottom of a nonstick, or well seasoned cast iron pan with a 50/50 mix of olive oil and good butter.  When the butter begins to froth, slide in your gnocchi.  DON’T CROWD THE PAN.  Work in batches, or multiple pans if you need to.  Let them just sit, shaking the pan now and then to make sure they’re not sticking.  When you’re pretty sure that you’ve got a satisfying brown on the first side, wrist flip the pan a few times to re-arrange and keep browning.  Repeat until you’re satisfied.  Right at the end, toss in some julienned sage and serve.  You won’t be disappointed!  A little Parmesan on top doesn’t hurt anything at all, but you may find you don’t even need it.

Advanced version:   Here’s a nice little twist that you can do.  It’s what I did last night.  While the potatoes are boiling, pour a quarter cup or so of olive oil in a small skillet.  Put some garlic and fresh herbs in the oil..  sage, thyme, rosemary.  Put a little heat under the oil, but only for a moment..  then just let it steep.  When you’re making the gnocchi, add some of this oil (discard the herbs) to the well with the egg.  Use the rest of it when you fry them up! Your gnocchi will end up with a beautiful subtle herb-y aftertaste.

UPDATE!

On the subject of egg: Mario Batali uses a little when he makes gnocchi.  So while it is certainly not traditional, I can live with myself!!

Salt!  Yes.  In short.  Though I don’t actually put any in the dough.  I liberally salt the boiling water, and I use salted butter when I pan fry them.

getting used to a shit bag

Home for a couple of days now.  Such a relief after the hospital.  Good naps with putney.  Actually going outside (though it’s been raining since I got home).  The option for real food.  And uninterrupted time with my wife who is some sort of saint or maybe angel to be taking all this on with the level of grace that she is.

The big news, however, is that the ostomy has finally started working.  And how!  Gross.  Important to call it what it is, I think, and what it is is Yucky.  The nice thing about shitting the normal way is that there’s sort of a beginning and an end to it.  Sure..  maybe you’ll have to come back in a while and do a little more, but you can decide “that’s enough, think I’ll wipe, pull up my pants, and go do something else for a bit.”  Without a sphincter, it just sorta keeps coming.. on it’s own schedule.  The last couple of nights, I’ve gone to bed with a bag attached to me with shit already in it, knowing that putting a fresh one on would be silly.  Imagine cleaning up after your dog, and then tying that plastic bag to your belt loop and hanging out with it for the rest of the day..  or over night..   Right.  Yucky.

It doesn’t help that the particular sludge coming out of me at the moment is something from HELL with a stench unlike anything I’ve ever smelled.  The product of a drugged, hospitalized, constipated, wincing body.

I’ve been told that as I settle in and my bowel rhythms fall into line, that I’ll be able to irrigate once a day and empty out a good portion of the bowel, and then simply tape a piece of gauze over the thing and cross my fingers..  That would certainly be preferable. I don’t doubt that I’ll get there.

Yesterday, I had coffee and waited a while..  when I was fairly certain that my bowels had done what they were going to, I took the whole set up apart, took a shower, and started entirely fresh.  I put on some clean clothes. I felt pretty decent.  Went off to the doctor for a follow up.  He felt that things were looking great, and even took out all the staples..  He replaced them with Garfield band-aids, and said that it was very important to keep a sense of humor.  In what felt like a pretty offhand way he told us that he had removed quite a tumor.  Two inches long and through the wall of the rectum.  It is mildly confusing to me how this thing went from scar tissue spotted on an MRI that was “consistent” with the sort of surgery I had a few years ago, to an ulcer/lesion that might be treated with a suppository, to something of unknown dimension with viable cancer cells, finally to a REAL BIG BOY TUMOR with involved nodes.  It is not as though I haven’t been under pretty close scrutiny.  It would be pretty easy to jump to the conclusion that the docs had REALLY missed something.  I don’t think that’s it exactly.  It may be that there was a little undue optimism on their part, that made them believe they were seeing scar tissue..  I don’t know.  In the end we found it.  My surgeon told us that the good news was that it was completely removed (along with my continence), that the nodes were all local to the tumor, and not spread far and wide, and that I was young and otherwise healthy and would be able to stand outrageous doses of chemotherapy (oh boy!).

We left the doc, and I decided that I would venture on with Hill into the world and see how it felt.  We jumped on a subway and headed down town.  I thought maybe I’d go look for suspenders (my new uniform..  pictures soon.. and perhaps a dedicated post!), or stop in on the new location of a pool hall that I once lived at long before Hillary or any of you knew me!, or maybe go to the camera store to fondle a camera that I’ve been considering as some sort of retail therapy type purchase.  By the time we got to union square, though, I was SO tired, and SO uncomfortable, and it was raining SO hard that it was clear I should probably go home and get horizontal.  Oh well.  It was worth the try.  Each time now that I’ve been in the position to experience it, I’ve been shocked at the amount of energy it takes to heal.  I guess when you think of what your body is having to actually DO it’s not shocking at all!  Still the experience is strange.

“I’m feeling well, the pain is under control, I have ambitious plans, I want to see the WORLD!!  I think I’ll just lay down for a minute.”

Thank you all for your emails and comments.  I’ve been lousy at responding, but in my defense, there’s been a LOT of it.  Please don’t think you’re being ignored.  It is an incredible comfort to me to read you all.  Keep it coming.