Saturday, March 01, 2014

The feeding tube and the desire to pound orange juice

See this here egg?

Egg

We'll come back to it later. It's important.

I've more or less accepted that I'll be getting all nutrition through a tube in my stomach from now on, which means I can't take in anything that's not liquid and lump-free.

And now that I'm essentially Nil by Mouth 24/7, of course I want to consume everything that even remotely comes close to my head. Of course.

I get obsessive over particular foods. For a while I had a huge craving for really chilled fresh apple cider. We had some in the house so my mom could try it. The fact that I knew it was there, waiting quietly in the fridge for someone to take the whole bottle and just chug it (me? Is it me?? Oh ...it's not) was almost painful. I felt like Allie Brosh during her Cake episode.

And then it started to go all fermenty, so we threw it out. And the problem seemed to fix itself: no more craving.

Until the orange juice.

The apple had been the last thing I'd had to drink as a "normal" while I was in hospital (actually a delicious JP Licks' apple sorbet freeze). So at least I had some idea where that craving had come from.

But the orange juice had no similar origin story. And yet here I was, fixating on glasses of OJ in magazine ads, or staring at the pitcher of bright juice on the TV family's breakfast table, all but wanting to run onto the soundstage and yell, "What's wrong with you people? You want to let this go to waste??" before grabbing the jug from a surprised TV mom and pounding the entire thing.

This time, I thought, I'll be smart about it. Rather that ignoring the need altogether, I'd meet it head-on.

I got a 6oz box of Tropicana and a straw. I curled up in the only position in which I can reliably drink water without it coming out of every orifice (on my side, curled in a ball). I started to drink.

Hm. Is that all there is to juice?

Yep, somehow the fantasy of orange juice had far outweighed the reality. I even tried squeezing a fresh orange, to see whether that made a big difference. And while it is markedly better than the pasteurized stuff, it's still OJ.

Obsession over.

After thinking about this a lot, I've worked out a way to approach the cravings that deals with them more effectively.

Think about your own history with food. You must have a Platonic ideal that comes to mind when you think "donut" or "steak" or "wine." Why is that pie from that diner in Maine the best ever? Because you'll never have another like it.

And you can go through life with the knowledge that it's probably still available, and probably will be just as good, even if the context and situation are different. Or maybe it's the diner you'd always stop at on your way home from the weeks' vacation, so it has a special meaning.

Which brings us back to the egg at the top of the page. This was the dessert at the much-described three-hour lunch at Club Allard in Madrid, a meal that, in itself, will never be topped. The egg's outside shell was made of chocolate, carefully painted with metallic paints. The white was coconut and the yolk was mango.

It was one of the greatest things I've ever eaten in my life. And I'll never eat it again. But it that reason to complain or become obsessive? Of course not.

I just need to apply this thinking to every sandwich, piece of chocolate, slice of cake, banana milkshake and plate of cheese I come across.

Wish me luck.

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Wednesday, February 19, 2014

End of the line

At my last check-up, my lovely nurse practitioner had noted my liver counts were off and she wanted to order a CT scan. This was ominous.

A few days later, as we drove to hospital to get the results, The Boy asked me, "What's your idea of a worst-case scenario?"

"One month," I said.

So we met with my NP, who told us pretty much what we'd expected: the Lump had metastasized and was now also taking up residence in my liver. There was an oral chemo we could try, without which I could assume my timeline to be about

one month.

I realize I forgot to ask what the best-case scenario might be. I've always been more pessimist than not.

So. Here we are.

I guess I should be running around fulfilling my bucket list (you know, like in that movie, Basket Case), but the weather has hardly been inviting. And between the totally tubular feeding and ongoing pain issues, I haven't had much energy for hang gliding or scuba diving (wait - those things were never on my list ...).

So part of me feels as though Aagh! The clock is ticking! And I'm sitting on the couch watching X-Files on Netflix!

And part of me thinks, what the heck does it matter, really? Do I need to cram a bunch of experiences into a couple of weeks to prove a point? Oo, it's the one with Peter Boyle.

Because anyway, who cares what I haven't done? That list would be a mile long for anyone.

Here are some things I have done:

Canoodled with wolves;

Eaten a ten-course lunch in Madrid;

Patted the tongue of a friendly Beluga;

Beluga at Mystic Aquarium

Spoken to 2,000 people from the stage at the Wang Theater;

Seen the Grand Canyon;

Helped train harbor seals;

Seal snorgle!

Fed handmade raw-chicken treats to lions and tigers at Big Cat Rescue;

Seen Paris from the Eiffel Tower;

Seen Conan O'Brien from a short, awkward distance;

Eaten at Momofuku, Chez Panisse, Le Bernadin, Au Pied de Cochon;

Fired an AK-47 and visited the Liberace Museum on the same day;

Lounged on a nude beach;

Made vermouth from scratch;

Grown and eaten my own tomatoes, warm and sweet, straight from the vine;

Made people laugh;

Baked my own bread;

Known real love.

Diego and Richard Serra

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Sunday, January 19, 2014

Feeding time

I'm typing this while I have dinner. No, I mean literally; while both my hands are on the keyboard, I'm ingesting a carefully balanced blend of one-quarter of the calories, protein, vitamins and minerals my body needs.

Yep, I finally succumbed to the feeding tube.

I really had no choice; the hole in my face was making it increasingly difficult to drink even the simplest smoothies, and I certainly was not keeping up a nutritional balance that would help my body to bounce back from treatment.

So last Wednesday I checked into MGH for what I assumed would be a one- or two-day visit.

Ha.

Things started to go off the tracks when they discovered I had a fever. Now here's the thing: I'd had this fever for a while; I just never recognized it as such. Chills during the day? Yes, because I'm cheap and refuse to turn the heating up. Much rather sit under a blankie. Hot spells at night? Yes, because now the heating was on and I was still wearing nine layers of clothing.

Oh, that's what a fever feels like?

So they wanted to load me with antibiotics to get the fever down before doing any procedures. Fine.

Then I had the tube fitted. Not a terrible experience, because I was asleep for it, but I woke up feeling like I'd been stabbed in the stomach. Which I guess I had.

Tube

There were a couple of days of real discomfort, when sitting/walking/laughing was a sharp reminder of what had happened, but gradually the pain got better. We did some test runs with the feeding tube, and it seemed to be working fine.

Until it wasn't.

After some smooth, straightforward feedings, suddenly the tube would clog. It wasn't even possible to push water through it. The nurses tried a couple of usually successful remedies (warm water; ginger ale) but in vain.

So it was back down to surgery for a refit.

This experience was in every way the opposite of the first.

Although his assistant claims otherwise, I'm pretty sure the surgeon used no painkillers on the site. He worked fast, but that seemed more so he could get me out of the way. I actually swore, loudly and angrily, while on the table.

This was what actually being stabbed felt like.

Luckily, there was little extra wound pain on top of what had already existed, so healing continued normally. And this tube has — so far! — behaved itself.

Feeding isn't the worst thing in the world. Maybe the biggest change is that I'm now "feeding" instead of "eating." Four times a day, I feed.

Bagging up

And the process is pretty easy: flush the tube with water and attached a line that's connected to a bag of pre-made formula. Sit around until the bag is empty, which takes about 90 minutes. Flush with more water. Done.

For antibiotics, painkillers, etc, I have an oversized syringe that looks like something from the Hannah-Barbera Iggy Pop Saturday Cartoon Hour.

Cartoon syringe

Buuuut ... of course there's the other side to all of this. No more food by mouth. No knocking back a big glass of fresh orange juice or chilled apple cider or creamy hot chocolate.

No more choosing food by taste; all I get is the formula. It has an odd, insipid processed-vanilla flavor. The Boy, of course, thinks it's quite tasty.

No cocktails, though it would be hilarious to watch a bartender create something house-infused and artisanal, just so I could pour it into my syringe and inject it directly into my stomach.

Obviously this is just another thing to take in stride, just as I did with temporarily losing tastebuds and permanently losing the ability to open my mouth. I'm trying really hard not to think about food, not to dwell on memories of past meals or favorite ingredients. That way lies madness.

So what happens next? I'm going to do my best to make the most of these forced 90-minute time-outs. It's perfect for watching a movie or really falling into a book. Or even getting back into blogging more consistently.

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Saturday, January 04, 2014

Forty-five

Today is my 45th birthday. From where I sit, that's quite an achievement, given what's happened over the last six months or so: I learned the cancer in my face had come back, and that this time there was no cure. (Short version: You can only kill it with radiation, which I've already had twice. The human body can't cope with radiation three times.)

In the meantime, I've been on a couple of different chemotherapies designed to slow or reverse the tumor's growth, and we're also looking at clinical trials. It's been a tiring, frustrating challenge, as I've mentioned before.

And each time there's been a bump (ha!) in the road, I've thought, What if this is it? What if this is all the time I have?

I've seriously not known if I'd make it to Halloween, Thanksgiving, Christmas. But looky, apparently I did.

And I don't know how much time I have ahead. Enough, I dearly hope, to enjoy my parents' visit in a couple of weeks. Dare I reach for our wedding anniversary in February? What about seeing the arrival of the 30 hyacinths I planted in the fall? What about The Boy's birthday in June? Is that asking too much?

While it's a cliché I'd happily punch in the face, all I can really do is take it one day at a time. Today, for instance, The Boy has booked us a suite at the Hotel Commonwealth. I intend to spend the day in my pajamas watching movies before taking a large and indulgent bath. A week ago, staggering through the exhausting side effects of chemo, the idea of leaving the house was too much to contemplate, so this is a big step.

And a nice change for The Boy. I certainly can't go on without mentioning everything he's done to keep me sane over the last few months, falling into roles he never expected, learning medical skills he really shouldn't need to know. Finding me things to eat. Taking on more of the household chores. Going out in snowstorms to get medical supplies. Letting me rail at him because there was no one else around.

Y'all better be good to him, is what I'm saying.

So, day at a time. Most will be quiet, subdued, nap-enhanced; this seems to be my modus operandum. And where once I may have struggled against that, now I accept it. I have books still to read, movies to watch, things to say.

So I won't get another 45 years. How about 45 days?

Yeah, I can do something with that.

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Saturday, December 14, 2013

I have cancer. And I'm angry.

The goal of this blog has always been to entertain. It's never really been about my life or my problems, though obviously it's hard to write about food and eating without the context of where, and why, and with whom. Over time, intentionally or not, that has created a portrait of who I am.

When I got my cancer diagnosis in January 2011, I figured, No big deal, I'll use the blog to keep people up to date, and maybe find some ways to talk about food from the perspective of a patient.

I used the same voice and tone as I always had: keeping it light even when writing about the dark days.

And everyone said, "Oh, you have such a great attitude. So positive. It's really inspiring."

Yeah, well, we're done with that now.

Because this stupid mass of chaotic cells in my face seems bent on ways to pull the rug out from under me at every opportunity.

And I'm angry.

I'm angry at everything this stupid disease has taken from me. It's been incremental enough that complaining has seemed almost petty.

Yeah, I can't lick my lips, but I have Chapstick. Sure, I have to feed myself through a straw, but I can still taste hot chocolate and coconut chicken and ginger ice cream. Yes, I've been sleeping upright in a chair for months and missing the warmth of The Boy in bed, but it's better than tossing and turning all night, keeping him awake while I deal with neck pain and shortness of breath.

But that feels like the gentle crawl up the roller coaster. And now we're about to hurtle down the other side.

You want to go an elegant Cape wedding? Ha, no - facelumps, enlarge!

You got tickets for a show? Bought them five months ago? Shame you're just too fatigued now, ain't it?

Oh, you're invited to a friend's house for a Christmas brunch? Naw, how about — boom! — we make a hole in your face instead?


The hole appeared Tuesday, terrifying me in the bathroom mirror at 5am. Thank goodness I was due to see my awesome nurse practitioner that morning. She took it in sympathetic stride.

Apparently recent chemo had liquefied some of the tumor (science!), which had then burst through my cheek. It was the tumor that sits inside my mouth, up against my teeth, and the damage happened in such a way that there's a small passage all the way through. So every time I drink something, a tiny bit dribbles down my neck. Which means eating/drinking are hard, the after-effects are gross, and attempts to keep the wound clean are challenging.

And on Friday I found out that tumor-related wounds don't always heal.

Think about your face. Take the first knuckle of your pinkie, and hold it against your left cheek just to the left of your mouth. Imagine there's a little hole, a shelf, a cave, full of white goop. Which will need to be swabbed, packed, bandaged. For the rest of your life.

Am I still being positive?

Let's keep going.

Because the wound goes into my mouth, it's even harder to suck anything through a straw. Suction requires pressure, and you can't maintain pressure when there's a hole in the system. It takes an hour to coerce a milkshake down my throat.

My other nurse says, "Just press your hand against the dressing where the hole is. That should create a seal."

Which feels like another of the Mutant Cells' way of kicking me; The Boy and I had just been talking about how we could hack a Christmas dinner that would work through a straw. It involved cooking a mini Christmas pudding and blending it up with custard. I'm pretty sure it would have worked.

You want any kind of nostalgic Christmas traditions? Ha ha ha!

This rant may seem to come out of nowhere, but it's been building for a few long months as little chunks of control, little fun pieces of life, are taken away. Going out with friends. Going to the movies, the mall, the grocery store. Getting a haircut. A manicure. A frappe.

These days, I don't want to leave the house. Talking is really hard. It's painful, and my words are mushed and foggy, which means I have to repeat half of what I say if I want to be understood. I avoid it whenever possible. I communicate with Diego through terse sentences and "Mmmm"s of varying emotion.

And don't say, "Oh, it can't be that bad. No one will notice. You're still beautiful."

We're way past that. Sorry, but we are.

How's my attitude now?

Don't worry: I have started meeting with a lovely social worker, who's helping me through this. So it's not desperate.

And what of The Boy, patient and long-suffering? Of course he's trying to take it all in stride, even though that now includes dealing with my sudden explosions of frustration - and with wound care. Yep, he's the one who gets up close and personal with this grossness, cleans it out, packs it with gauze and bandages me up.

I know none of this is my fault, but I still hate that my problems have become his problems. Richer or poorer, sickness and health, whatever. This is not what I want for him.

But hey, I guess you have to stay positive, right?

Screw that.

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Monday, October 07, 2013

Wedding shower smoothies at Eastern Standard

As I've started again with the food (drink?) writing, it would be remiss of me not to talk about how much I love Eastern Standard. I mean, I've always loved them (as I may have mentioned here once or twice), but on this occasion they went above and beyond.

First off, bad news, boys: Lovely Co-worker Sarah is getting married. (Actually, she's no longer a co-worker, though she is still lovely.) True to form, she decided to have her wedding shower at Eastern Standard; she's even closer to becoming a resident there than I am.

I was so excited to get the invitation, but then immediately started to worry. This was my first public outing, since the trismus kicked in, at which food would be served. What was I supposed to do? Leave early, before lunch? Arrive late, having had? Sit and make small talk at an empty setting while everyone else ate salad?

I asked Sarah, who passed me along to Trish, her best friend and shower organizer. Trish said she'd talk to Eastern Standard.

"Seriously, I don't need anything special," I said. "Tell them to take whatever they're giving everyone else and throw it in the blender."

Well, of course, that's not what they did. Not even close.

Turns out they had separate meetings to decide on a special menu just for me.

I get quite misty-eyed just thinking about it.

So while everyone else had flatbread pizza and salads, I had an amazing chilled corn chowder that tasted as though they'd extracted essence of corn, fresh from the field, and poured it into a glass. Vibrant, light, refreshing. How often can you say that about a soup?

Chilled corn chowder, Eastern Standard

And when the other guests moved on to steak frites (which oh lordy looked so good), I was well compensated with a healthy blueberry-spinach-Marcona almond-Greek yogurt smoothie. The almonds were a great touch; the flavor came through very nicely.

Blueberry-spinach smoothie, Eastern Standard

Dessert was perfectly pretty and preppy: macarons in Lily Pulitzer colors (which I could admire, if not consume):

Macarons, Eastern Standard

And then everyone got strawberry milkshakes, so I felt more like one of the girls.

Strawberry milkshake, Eastern Standard

Dining out when you can't eat is enough of a challenge. Dining out when someone else is in charge of the menu — and has been kind enough to invite you along — brings a special set of concerns: How much are you allowed to intervene? What responsibility does the host have for your needs, especially when they're also dealing with other guests?

This event went well, partly because the organizer was happy to work on my behalf (for which, thanks a million, Trish!) and partly because Eastern Standard does such a fantastic job with customer service. I'd say when in doubt, talk to the people who know you and know your challenges, and see what can be done.

And happy upcoming wedding, Sarah! No, I'm not taking this picture down - we look too divine!

Sarah's wedding shower

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Monday, September 30, 2013

Harvest Wine Bar, Greenwich, where the chef is always right

(Update: I got a wonderful response from Harvest to this post. You can still get angry at the chef, but then see the end for the follow-up.)

After our fabulous weekend in Atlantic City, we hit the road to head back home. It was a pretty straight ride, with very little traffic even on the Cross-Bronx Expressway, so we hit Connecticut in the early afternoon and decided to find a place for lunch.

The Yelp iPhone app showed a number of places, and based on reviews we decided on Harvest Wine Bar on Greenwich Avenue. The menu looked good (plus extra props for listing the local farms they source from) and the place was bright and cozy, with reclaimed wood on the walls and an open kitchen.

When the waitress came to take our drink order, I explained that I couldn't eat solid food — feeling confident that I could communicate this effectively, after a weekend of successful liquid meals — and she said she'd check with the chef.

A little later she came back.

"Yep, that should be no problem, though obviously some things won't blend very well."

Great. Perfect. I ordered the salmon.

She went to check.

"No, sorry, Chef says he won't blend protein."

What. What? That's a bizarre refusal at the best of times, but as I'd just had two dinners and a lunch in Atlantic City that revolved around seafood, it seemed perverse.

Is it because he's too busy? I asked (a little facetiously, as there were only two other occupied tables in the place).

"No, but he thinks it will change the original flavor of the dish."

Well duh, of course it will. Sorry to stomp on his Vision, but I just want nutrients right now.

Okay, let's try something else. Mac and cheese?

This time, I watched as she walked over to the pass and relayed my request. And I saw the chef say no.

And it wasn't a "Gee, sorry, we're not going to be able to do that."

His expression was this:



It wasn't just "no";  it was "Hell no, I'm not wasting my time."

Please note that I'm not in any way comparing Executive Chef Gustave Christman III with The Situation. However, this gif is as close as I could find to approximating the evident distaste on his face.

This was a little upsetting. Basically the guy was saying that he had no interest in helping me out. He didn't care whether I had lunch or not.

So when the waitress came back, I burst into tears (which totally freaked her out - this wasn't her fault, after all!). I tried to explain what was going on, but between not being able to talk properly and crying everywhere and being more than a little hangry, my communication skills were not at their best.

Note that he didn't come out from the kitchen to discuss options personally or see if we could come to a compromise. He easily could have; again, he was hardly in the weeds.

She went back to the pass and somehow got him to change his mind.

Kinda-sorta.

Eventually, she delivered a cast-iron dish of mac and cheese that looked as though it had been smooshed into lumps with a fork. I stared at it.

"I'm so sorry, but I can't drink this through a straw," I said.

"I know," she replied. "Let me try again."

This time, I saw her at the bar, holding up a pilsner glass to the chef in a "Do you want to use this?" gesture. But apparently he didn't, because a few minutes later she came back with the original dish, now plated a little less neatly, the contents slightly less lumpy.

"He says this is as good as he can get it," she said.

I added some water from my glass and stirred it to make it more liquid.

IMG_5046

But it was still impossible to do more than suck up the top layer. Which is a shame, because the cheese blend was pretty good.

By the time we finished lunch, I was so upset that I was shaking. And although I hate confrontation, when I saw the chef standing at the front of Harvest, gazing across the street, I had to let him know how I felt.

"Really sorry that the concept of 'drinking through a straw' is too complicated for you," I said.

He faced me, arms folded across his chest, unsmiling.

"You can't blend pasta," he said. "Pasta is a starch. It doesn't blend."

Not "Sorry we couldn't find something for you to eat" or "Maybe next time we can do you some veggies."

Pasta doesn't blend. I proved that. And now I have won.

Really? What kind of a chef says this? How egotistical do you have to be to decide your need to prove a point is more important than your guest's dining experience?

Not to mention the fact that, over the last few months, I've blended everything from spinach lasagne to shells. The secret is to add plenty of liquid, but I guess that was over Gustave's head.

So I lost it a little and — I'm not proud of this — called him a "line cook." It was my Doorman Doorman Doorman moment.

And I meant it not to insult line cooks, but more to say his reluctance to customize a dish was more in keeping with the work of a cook who had instructions for completing dishes in a particular way than with an executive chef who (one would hope) had some ability to be flexible and creative.

Oh, and here, one more time, is the lobster orecchiette I had at Mia in Atlantic City on Friday night.

IMG_4791

(Orecchiette, Gustave, is a type of pasta. And it blends.)

Update
Harvest co-owners Vincente and Kleber Siguenza left a thoughtful and sympathetic comment on this post. I emailed to let them know I couldn't really use a gift certificate, as we're not usually in the Greenwich area, and suggested they donate it to the Smilow Cancer Hospital.

Their reply:
Thank you for your email. We are sorry you will not be able to return to Harvest, but what a fantastic idea to donate the gift certificate to the Smilow Cancer Hospital!  We have been active contributors to the cause through the Multiple Myeloma and the Leukemia & Lymphoma Society, so we are happy to oblige.

We have worked with the Greenwich Hospital Foundation at its Great Chefs Event in the Spring of 2013. We contacted Andrea Guido from the Foundation and arranged to have the $100.00 Gift Certificate donated to their upcoming Gala on your behalf.

We are also pleased that you brought dysphagia to our attention.  This type of awareness is very helpful to our customer service approach, and we will use it to benefit all of our restaurants.
I'm very happy with this response; I can't imagine how it could have been handled better.

The story still stands, though, as a study for other chefs: sometimes a diner will need a little extra accommodation. Please don't be offended if we need to crush your delicious, carefully created vision. We're just hungry.

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A weekend through a straw: Atlantic City

We have a group of friends we see every week. Literally; with very few exceptions, we've met up every Thursday night for almost 20 years. They all went through MIT with The Boy, so he's known them longer, and I've come to consider them my surrogate brothers (seriously, you guys. Sorry if I'm displaying feels here).

Even though we have the regular Thursday thing, it had been years since we'd done a group activity of more than a couple of hours. So this weekend, we took a road trip to Atlantic City. Because why not?

Of course, my main concern (apart from What am I going to wear?? was food. We rarely eat out any more, largely because the whole "please take your delicious dish and make me a slurry" thing gets tedious. And I hate causing a fuss. So I volunteered to scope out restaurants that would be able to accommodate my stupid trismus but also show the rest of the gang a good time.

This turned out to be easier than I expected.

Our first night's dinner was at Mia at Caesar's Palace. It looked high-endy, spendy, potentially unfriendly. But my email got a quick response, and a promise that the chef had been told about my situation and was cool with it.

Of course, I still didn't know what that meant. But I didn't have to worry.

First we were greeted by Jason, who had replied to my email and also happened to be our waiter. And then chef de cuisine Paul Hanley (adorable and inked) came out and we had a thorough discussion about what I could and couldn't manage.

"Just throw some stuff in a blender and give me a straw," I said.

"Don't worry," said Chef Paul. "We'll look after you."

First course: lobster orecchiette with cappuccino foam.

Dinner at Mia in Atlantic City

Next, the zuppe di pesce I'd originally ordered, creatively split into three: shrimp and scallops in one glass, veggies in the next, and flounder in the third.

Three-martini fish soup

It was like a fabulous three-martini fish stew.

And then, even though I hadn't ordered dessert, a lovely surprise ending: a salted-caramel-chocolate shake.

salted-caramel-chocolate shake

Sadly this was more than I could suck down, and I had to leave some behind.

But the whole experience gave me a huge confidence boost. I could go out for dinner like a normal!

IMG_4795

The boys were also well cared-for, the star dish being spaghetti cooked in a red wine reduction until the whole thing was rich and flavorful. Genius idea.

Day Two began with a beautiful sunrise:

IMG_4820

And a trip to see Lucy, the largest elephant you can walk around inside:

Lucy the elephant, Margate, NJ

Lucy the elephant's butt, Margate, NJ

Then there was mini-golf; my first in-a-casino game of blackjack (in which I learned I'd rather keep the cash to spend on other stuff); and a cocktail overlooking the Atlantic before heading to dinner at Cuba Libre in the Tropicana.

Again, I'd emailed the restaurant in advance, and had an almost-immediate response, reassuring me there'd be no problems. I ordered a black bean soup and asked if they could throw in a little extra avocado, and that's what I got, served up in a milkshake glass with a straw. It had a generous dose of cumin and was fragrant and wonderful.

Sadly I have no photos of this dinner; I blame either the fact that it was too dark to get good shots or the pitcher of margaritas that appeared on the table.

Again, the staff at Cuba Libre was friendly, helpful, and more than willing to make suggestions and see that we all had a good time. Huge props to them.

On Saturday, I faced two potential challenges: breakfast at Teplitzky's at the Chelsea Hotel and lunch at a sad casino diner. Both times, I had to explain my situation to servers who were somewhat harried and distracted. Both times, I got exactly what I asked for: a smoothie-oatmeal combo at breakfast and a clam chowder smoothie at lunch.

Maybe this wasn't so hard after all.

The absolute highlight of Saturday was getting to ride in a helicopter, something I've wanted to do since I was a kid.

IMG_4978

Dinner was back at Caesar's, this time at the Atlantic Grill, a classy New York seafood kinda joint (also the place where we heard "Volare" for the third time that weekend).

I was a little worried about this one, as I'd booked through the Open Table iPhone app and it wasn't clear whether my special request info had gone through.

But again, when we turned up they were more than happy to accommodate me, and gave me salmon, puréed potato and asparagus, divided into two glasses and finished with a grilled lemon garnish.

Dinner at Atlantic Grill

And then we went to see a brownish area with points. She sang for about an hour, which was apparently longer than much of her elderly audience could manage, judging by the slow, careful stream of people heading for the egress. But hey, she did "Cabaret" and "Maybe This Time" and "New York, New York" and this haunting song. Another one to check off the list.

IMG_5006

We left Atlantic City somewhat reluctantly on Sunday morning. It had been great to get out of town and spend time with friends. For me, it was especially good to realize my fears about being able to eat out were unjustified.

Maybe this means I'll be writing about restaurants more often?

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Time to suck it up!

People keep pointing out to me that I haven't written anything since May. I know, I know.

It's just that I'm still on this stupid, frustrating (and at this point probably permanent) liquid-only diet, and how much can you really say about that?

"Today I had coconut chicken! Through a straw."

"Today I had veggie lasagne! Through a straw."

"Today I had salade Niçoise! Through a straw."

And pretty much every meal looks like a brown slurry (see previous post) so it's not as though there'd be vibrant photos to make up for the dull descriptions.

But then a friend who had heard about my liquid lunches suggested that other people going through similar challenges might find it useful to hear from a fellow sucker.

So going forward, this is for my homies with trismus, esophageal dysphagia, or any other pain-in-the-butt situation that means they can't just open their faces and shove food in there. Let's suck it up together!

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Wednesday, May 08, 2013

Living on liquids

Recently I've been trying to remember the last meal I ate.

Actually ate, I mean. With the silverware and the plate and the chewing. But I can't.

There are vague memories: juicy steak frites at Saloon; a ricotta-and-raspberry jam crêpe from Mr. Crêpe; take-out pizza from Eat at Jumbo's. The latter I remember because the sausage was too spicy for my tongue, already tenderized by the double-punch of chemo and radiation.

At some point there will have been a meal that I couldn't finish, because moving anything around my mouth was too painful to handle. And then I switched to a liquid diet.

That was, let's see ... six weeks ago? Hard to pinpoint, but certainly it was at least three or four weeks into radiation, and I had my last treatment a month ago last week. So maybe more than that.

These days, a typical menu looks like this:

Breakfast
Fresh-fruit shake with protein powder
Smoothie of oatmeal or Weetabix, yogurt, ice cream, coffee. No, I mean all at once. In the smoothie.

Breakfast smoothie ingredients

This isn't too bad, actually; I add spices (cardamom, nutmeg, cinnamon), which helps. The yogurt is for extra protein, and the ice cream boosts calories.

Lunch
The Sardini (with apologies to Dr. Zoidberg)

Sardini

This is pretty much exactly like a Martini, except you use cucumber instead of vermouth and a whole can of skinless, boneless sardines in olive oil instead of gin. And you add Greek yogurt. Huge protein punch.

Dinner
Soup, probably

Soup!

You'd think there'd be endless variety here, but no: I still need to keep things fairly bland. I can't do anything spicy or acidic — tomatoes are painful, as is a surfeit of leeks or peppers. Smooth is better than lumpy, as anything fibrous is difficult (corn; beans that shed their outer layers). This basically leaves me with root veggies (sometimes roasted), well-cooked greens, cheese sauces.

Now and again I go bigger. There have been fish chowders and slow-cooked beef short ribs. Tonight is a chicken and eggplant stew, vaguely North African but without the spice, of course. Cooked long enough, puréed well enough, they make a nice change from squash soup, though they're still harder to eat.

The whole thing is becoming tedious.

Plus, it's changing my attitude toward food in general. I can still see it and smell it, of course, but the taste aspect — and that includes the anticipatory pleasure, looking forward to the taste — isn't there any more. So now I regard a beautifully plated charcuterie selection in much the same way as a flower arrangement: Yes, it looks lovely, and smells wonderful. And that's as far as it goes.

What's more, I no longer distinguish between types of food. I have as much use/need for a lemon meringue pie as for a plate of raw pink chicken breasts. I've never liked mushrooms, but right now they're no different than a fresh orange or a bowl of pistachios or a bar of chocolate.

I know I shouldn't complain. There are people who have been through worse than this; people who have lost all ability to eat, who will spend the rest of their lives getting nutrition through a tube in their stomachs. My condition is temporary, and should clear up in a few more weeks.

Still.

I have visions of the first proper food I want to eat. A cheese sandwich: good white bread, lots of butter, a salty Cheddar. When I described it to my dad, he said, "You mean where you take a bite and there are teeth marks in the bread and the butter and the cheese?"

Yes. That. Exactly that. I dream about it.

I guess I haven't given up on food completely.

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