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.

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.

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.

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.



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)



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



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.

State of the Tastebuds

I figured it was time for a quick update on my eating abilities.

(If you're new to the blog, you can catch up on my cancer treatment adventures.)

The good news is that, tastewise, I'm pretty much back to normal. I can distinguish flavors almost as well as I could before treatment, as my recent post on dinner at Journeyman will attest.

But there are still a few annoying details, such as:

Dryness
Radiation zapped out my salivary glands. Allegedly they will return at some point (months? Years?), but until then my mouth dries out constantly. Me + water bottle = Linus + security blanket. I get like a junkie between fixes if I think I won't have a chance to refill it.

And of course it's not just an issue when my mouth is at rest (like that ever happens); there's now a whole new set of concerns about what and how I eat, especially when it comes to foods like:

• Bread (soaks up any residual saliva like a sponge)


• Cheese (turns gummy and gluey)


• Chocolate (does not melt in the mouth. Sticks to the teeth and stays there)


• Nuts, crackers, chips, popcorn (you know the Saltine cracker challenge? Like that. All the time).

Of course, generally all this discomfort can be avoided by taking a sip of water with each bite. But what does that mean? The intrinsic flavors of whatever lovely thing I'm eating get diluted — literally watered down. So instead of some carefully crafted cheese, I get liquid with a vague hint of two-year-old Comté.

Hotness
Okay, I never had the oral fortitude to take on vindaloo. But I do (did?) enjoy cuisines that employed spices: Mexican, Middle Eastern, Chinese, Indian. Now, though, I stare warily at fresh-ground pepper. I find gingerbread adventurous. Pesto is a teeny bit too garlicky.

A while back, I picked up some Vosges Aztec Elixir hot chocolate mix, which is kicked up with ancho and chipotle chilis. I was planning to keep it for the first brutal snowstorm; I was almost hoping for a good blizzard (me, Miss Anti-Winter) so I'd have an excuse to break into it.

But now I'm worried that after all the anticipation, I'll take one sip and realize it's too much for me to handle.

I've become one of those people: "Excuse me, but how hot is this dish? Is it spicy? Because I can't eat anything spicy."

I still love going out to eat, of course. But I used to be able to close my eyes and point at any menu item and say, "Yes, that one" (not that I would, but you know what I mean). Now I have to read each description carefully: how hot are the "spicy garbanzos"? Is pepper jack the only cheese option? Do all the maki rolls have wasabi in them?

This is supposed to get better over time; I just don't have a sense of how long "time" is. It's the kind of thing that depends on age, treatment type, and the body's overall ability to recover from trauma.

Big bites
One of the post-treatment gifts that keeps on giving is the dime-sized chunk of scar tissue in my cheek. It's not visible from the outside, but it limits my ability to open my mouth as wide as I used to.

You know when you're being overly dramatic and you stick two fingers in your mouth and pretend to blow your brains out? (Or is that just me?) Anyway I can't do that. I eat bananas by nibbling daintily around the outside. I dine most comfortably with a dessert fork or a teaspoon.

Again, this is supposed to be temporary, but change is all up to me. If I'm good and do stretching exercises, it will eventually loosen up (though I don't know whether it will ever return to its original flexibility).

Problem is that I forget. Or I remember at inopportune times, like when I'm on the subway or in a meeting. Not the time to start randomly opening and closing my mouth ("Hey, guess what I am now? Goldfish!")

Yech, this turned into a bit of a complainy thing. Not my intention; just wanted to share some of what life is like right now. And I know things could be muuuhuuch worse.

So, back to talking about food I can eat.

Art, or metaphor, or something

When I started radiation treatment, they made a custom mask to keep my head still (so the "lasers" only hit the parts of my valuable real estate that they were supposed to). I asked whether I'd be able to take the mask home when I finished treatment, and they said yes.

This is what I did with it.



Note my lovely helper.



First we shredded paper, and added it to a flour-water glue (I used this recipe).

The first layer:



After three layers:



And now to paint! First, a coat of gesso and a background of white. And then the fun stuff.



The finished product, painted during a perfect, rainy afternoon in Gloucester, listening to birdsong and watching the river.





It turned into a cross between a Mexican wrestler mask and a superhero motif, which I guess is vaguely relevant.

The "POW!" is part-asskick and part-reference to my oncologist's observation that the only other patient he'd known with an attitude as positive as mine was a guy who'd had military training in Prisoner of War eventualities. Which says something about me, though I'm not entirely sure what.



The gold heart is where the Lump appeared.

The purple circles on the green background mark time; my treatment lasted 114 days, and each dot represents a three-day period. There are seven partitions around the top of my head for the seven weeks of radiation. (That's about as symbolic as I could get; the rest are just colors and patterns I thought were pretty.)



I've left one section blank white. I go for final CAT scans in two weeks, and after that I'll find out whether we caught all the rebellious cells, so I'm not completely finished yet. And there'll be at least a year of regular checkups, so I'm not going to declare victory until I'm completely confident.

For now, though, this is good.

My muted tongue

So here I am, a week and a bit out of treatment. As predicted, my skin has healed remarkably fast, and now I'm only waiting for a small area on my cheek to clear up. My salivary glands, which had taken a hit and started producing excessive mucus instead of saliva, are mostly back to normal, though my mouth still gets dry if I don't drink water regularly.

And while I was quite fatigued on the last day of radiation (a fact I only learned when I wore myself out baking cookies as a thank-you for my technicians), I'm getting much better.

But I still have no taste.

Okay, not entirely true: I've discovered that I can identify coconut, so avocado-coconut smoothies are my new friend. I can also taste the sweetness in turnip, which was in my soup last week. And I can detect lemon (I added some zest to an asparagus soup today), though it has an odd metallic edge.

But sugar just feels like granules in my mouth, and chocolate might as well not exist.

On top of the taste issue is the fact that my dry mouth makes it difficult to eat anything that's not already moistened. Cereal in milk is okay; bread is not.

So I'm in this strange position of craving certain foods — cheese, toast, roast chicken, oatmeal raisin cookies — but at the same time not wanting to eat them, because doing so would be frustrating.

A couple of weeks ago, The Boy brought home tres leches cake, which I love. (And it was a good idea, because it's a pretty moist treat.) But because I couldn't taste it at all, it just made me sad.

Being able to see delicious food — and perhaps worse, being able to smell it — is like watching your favorite music video with the mute button on. You get the visual, so some of the pleasure is there, but there's such a large part missing. And you can hear in your head how it's supposed to sound, but that's not the same as actually listening.

I'm trying to be patient, but I really want someone to hurry and turn up the volume.

Aaaand ... we're done

That's it. Treatment is finished. We're done.

The last session was quite the event. In the waiting room, I was approached by a patient I'd seen a few times — she's memorable because she puts on a bright blue silk robe while waiting for treatment, rather than the sad hospital gown that everyone else wears — who gave me a canister of Republic of Tea Get Wellness blend because she's doing this 29 Gifts challenge.

She didn't realize it was my last day; it was just coincidence that I was her recipient today.

And then I went to be strapped to the table for the last time, and listened to the Pixies, and at the end Liz came in wearing a graduation mortar, and she and Sid presented me with a certificate and a pin. Plus I got to keep my mask.



I had a great team of technicians: young and cheerful and spirited. It was always fun to be in the room with them.

Celebration time? The gift-giving woman said she was going to do vodka shots after her last session. That doesn't work for me: my mouth is too banged up to handle alcohol at the moment. But I'm looking forward to some quiet recuperation, healing, and getting my tastebuds back.

And then all bets are off.

Oh, for something crunchy!

Okay, final stretch: Three more treatments to go. The plan is to finish on Wednesday, but that may change.

I'm not pretty right now. The left side of my face is ... icky. Blistered and cracked and red and scabby, with occasional pustulence. Requires daily soaking in an astringent solution and then liberal application of petroleum jelly.

And when I go in for radiation, and they fit the mask over my face (which is also swollen, so the custom fit is a little tighter than it was), the wounds start to bleed, and I spend the 15 minutes of treatment feeling blood trickle down the side of my face and onto my neck.

I must have looked especially gory on Friday, because the technician made a note to check with my radiation oncologist to see whether we should take a break until my skin has healed a little. I do not want. I've been focusing on the finish line for seven weeks now. I want to end on time.

Happily, pretty much everyone I've talked to at MGH has said that the skin will heal quickly; apparently it's almost miraculous how fast it happens.

In eating news, there's nothing new to report. I still have no tastebuds, and I'm still on semi-solids. An average day's menu looks like this:

Breakfast
Fresh fruit smoothie
Weetabix, sogged to pablum with milk and yogurt

Midmorning snack
Odwalla protein shake

Lunch
Scrambled eggs

Afternoon snack
The Boy's milkshake of the day (could involve ice cream, yogurt, almond butter, maple syrup, banana, avocado, coconut milk)

Dinner
Soup

The other night I dreamed I was eating a grilled cheese sandwich that looked like this:



In my dream, I thought, "Oh cool! I'm using my whole mouth again! Yay!"

And then I woke up.

It doesn't matter, they all taste the same

Counting down to the end of radiation treatment: 13 sessions to go. That means two more weeks of Mon-Fri, plus three days. Ohai light, I see you at the end of the tunnel!

And things are going more or less fine. I'm still able to eat semi-solid food (carefully, using a teeny espresso spoon, chewing on one side only) and my weight hasn't changed. My team is keeping watch on my red blood cell count — if it drops below 30 somethings, standard practice is a blood transfusion — but at least this week the number went up.

I had my third acupuncture session this week: needles in two points on my ankle (for the spleen), two in my hand (for dry mouth), one in my stomach (general well-being), one in the bridge of my nose (emotional balance) and one in the very top of my head (no idea). I can't tell whether it makes a difference, because I have no 'puncture-free experience to measure against. But I'll do a couple more sessions just in case. Can't hurt, right?

And I still have no taste buds. Or more correctly, I have even less taste sensation than last week. And somehow my brain hasn't quite caught on to this fact yet.

Example: I was hungry after treatment on Thursday, so we went to the main cafeteria at MGH. It's like a food court, with areas for salads, pizza, soups, and an ice cream bar doing scoops, banana splits, frappes, etc. Perfect.

As we were standing in line, waiting for our turn, I checked out the ice cream flavors. Hmm, what do I want? Coffee, chocolate, strawberry? Peanut butter — ew, no! Ooh, raspberry ripple. Yes.

And then of course I got my frappe and took a sip and remembered that it doesn't matter what flavor I choose, because they all taste the same: neutral.

Later, we went to the grocery store to stock up on Odwalla protein shakes (because they're quick and easy and go a long way towards my daily protein intake). I grabbed a couple of each flavor so I wouldn't get bored of the same thing every time — again, as though option A would taste any different than option B.

Something else I've noticed: I don't remember what things taste like.

If I try and imagine the taste of, say, chocolate, or cherries, or cheese, I come up empty. I can remember how it feels to enjoy the flavors on a more emotional level, but it's as though someone has gone through my mind with a black marker and redacted the sensation. I can understand the concept of flavor intellectually, but not practically.

I can still smell, of course. The Boy has a chicken stew going right now, and the house is fragrant with bacon and onions. He'll cook it until everything falls apart, and then he'll let it sit for a day so all the flavors come together.

And while I know that, from my perspective, that doesn't make a difference, I'm still looking forward to eating it.

Tasteless

I'm almost at the halfway mark in my radiation treatment: 17 sessions down, 18 to go.

The sessions themselves aren't too bad — I show up, choose some music (they have Grooveshark set up so people can listen to whatever they want) and then lay down so that the technicians can fit my customized mask over my face and secure it to the table. Then I stay perfectly still and focus on the music while an enormous machine rotates around my head, zapping me with high-intensity beams from different angles.

And then it's over and I go home and wait to do it again the next day.

That's not all, of course. On Tuesdays I also meet with my doctor; on Wednesdays I get chemo; on Fridays I've been getting acupuncture as well. My days revolve around getting ready for hospital, traveling to the hospital, waiting in the hospital, being poked with needles/pumped with drugs/zapped with lasers, and traveling home again. Busy busy.

For the most part, luckily, my eating habits have not been disrupted. Or at least not until this week, when mucositis stopped by for a chat and decided to stay. Unable to chew food without pain, suddenly I was back to a diet of soups, Odwalla shakes, and anything that would surrender to my hand-blender.

How I love that blender; it turned leftover bolognese sauce into a rich beef soup (with a good dollop of Greek yogurt). It whizzed a spring risotto into something we decided would make a great party dip. It transformed mashed potato into velvety pommes purées (I suspect the 4:1 potato/butter ratio may have helped a little — hey, doctor says I need calories!).

But something else is happening at the same time: I'm losing my sense of taste.

I knew this was a likely (if not inevitable) side effect of the radiation, but I didn't have a sense of when it would happen or how long it would take.

One morning, as I was slicing up banana for our breakfast smoothie, I popped a piece in my mouth. It tasted ... as though the banana was in the next room.

Later I had pasta, and couldn't detect any flavor (though the pesto with it was as bright as ever).

Roasted cod I tasted, though dimly, especially in contrast to the accompanying black olives.

But cheese is gone. Gone. I tried some Borough Market cheddar — which is pretty strong — and it was just texture, nothing more.

HOW CAN I NOT TASTE CHEESE????

By this morning, the mucositis had subsided to the extent that I was ready for something non-liquidized for lunch. I fried some of the leftover pureed potato in olive oil and made a hole in the middle of the potato mass in the pan. Then I dropped in a pat of butter and threw in an egg. Then I covered the whole thing in parmesan and put it under the broiler to finish. It smelled great.

I was halfway through eating it (small, careful bites) when I realized that I could hardly taste it. There was plenty of mouthfeel: the creamy potatoes, the rich egg yolk, the crunchy extra-fried bits. But not much else.

I went to the kitchen, got the salt grinder, cranked a little onto a mound of potato. Mm .. nope, nothing. Maybe more salt? Nuh-uh.

How about just eating salt by itself? Apply crystals directly to tongue: nada.

Naturally, I did what any self-respecting modern gal would do: I posted this news as my Facebook status. I got a quick response from former coworker (and host of the fabulous 60 Second Recap) Jenny, who asked, "What about umami?"

So I reached for the Heinz ketchup, because it covers all the taste bases. As Malcolm Gladwell writes in The Ketchup Conundrum (a great read in general):

"The taste of Heinz's ketchup began at the tip of the tongue, where our receptors for sweet and salty first appear, moved along the sides, where sour notes seem the strongest, then hit the back of the tongue, for umami and bitter, in one long crescendo. How many things in the supermarket run the sensory spectrum like this?"

But I didn't get the crescendo. I got:

Sad Trombone

A thin shiver of vinegar; a shadow of sweetness. That's about it.

But my taste hasn't completely gone, at least not yet. I can still tell when something is chocolate, and berries are more or less berries.

And in general, I'm hopeful that the other senses will step up and take over. I'm planning on using a lot of fresh herbs and aromatics, and on making sure (at least when I can chew) there's a good variety of texture in my meals.

Right now I hear The Boy wielding the trusty hand blender. He's roasted some butternut squash and whizzed it into soup for dinner.

I have no idea whether I'll be able to taste it, but boy does it smell good.

Next step: radiation and related suckiness

What has happened so far: I'm done with the three rounds of induction chemo. Apart from a handful of bad days where I couldn't eat solid food, and some other minor side effects (hair loss, slight ringing in the ears, a constantly runny nose — somehow I didn't realize my nose hairs would fall out — minor fatigue), it was surprisingly easy.

So now it's on to Stage Two. Thirty-five sessions of radiation, five days a week for seven weeks. Oh, with a weekly chemo session thrown in, but at least that's just one drug (Carboplatin, for those keeping track).

Because they're zapping radiation into my face, which is pretty much prime real estate, I have to wear a custom-built plastic mask to hold my head completely still. I'll look a lot like this (though obvy without the chest hair. As far as you know).

The mask is constricting but not uncomfortable, and I don't have issues with claustrophobia. I just close my eyes and breathe and try to relax. Oh, and apparently I get to take it home at the end of treatment. Some people make them into art projects; one guy uses it as an ice mold to float in a punch bowl at parties. The possibilities are endless!

For the first couple of weeks, I won't notice much in the way of side effects.

And then ... things will start to go downhill. The combination of the chemo and the rays will start to blast out my taste buds (which will make things taste strange and then make things not taste at all), and I'll lose my appetite. Then I'll lose my salivary glands, which will instead start to weep mucus (frickin' A!) that I'll have to spit out every few minutes.

Eventually, it seems, the inside of my mouth and throat will be so raw that eating will be extremely painful. And I'll have no appetite and no energy, so I won't want to eat anyway.

At this point, the Thing To Do is get a tube fitted in my stomach, through which I can deliver specialized liquid nutrition directly. Bypassing the middle man, so to speak.

However. It is my absolute goal not to have to do this. I can't quite explain why, apart from On General Principle. I eat. I write about eating. So as long as I can hold out — as long as the pain is bearable and I have the willpower — I'll do my damndest to keep my weight up, get my RDA of calories and nutrition, the way humans are supposed to, and avoid the tube.

One thing that will help, I think, is acupuncture. I did a couple of short sessions during chemo, and the last round of mucositis, which I expected to be most severe, was the most manageable of the three. I take this as a sign that I should do more.

Once the seven weeks are up, it can take another few weeks before things slowly start to improve, and around eight weeks before things are more or less back to normal.

Taste buds can take up to a year to come back fully; some tastes may be permanently altered. So that will be ... interesting.

I'm going to keep writing about as much of it all as I can. But there may be chunks of time when I don't post much. Don't worry; I'll be back.