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.



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.



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.



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.

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?



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.



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



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



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!

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.



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.



(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.

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.



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.



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.



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!



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:



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





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.



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.



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.



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?

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!