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.

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.

Home chemo, aka Bag Week

Tomorrow I start what I hope will be my last long cycle of chemotherapy. (Of course, I thought the same thing last year, and look where that got me. But hey.)

And I realized that although I've now been through five of these cycles, and complained about the side effects, I haven't said much about the experience of home chemotherapy, aka Bag Week.

So here we go.

Early in June I had a port implanted (again). The procedure isn't too bad, because you're under light sedation, which gets you nice and means you don't particularly mind that someone is forcing a tube into your vein (though you're alert enough to observe that you would be more freaked out by the experience if you weren't so high).

There are two main advantages to having a port:
1) Easy access for drawing blood and giving IV drugs, rather than junkying up the arms
2) It allows for a constant, four-day-long dose of chemo at home. My first round last year, before I got the port, was as an inpatient because they don't like you wandering around outside with needles in your arms for that long.

When I go in tomorrow morning, I'll have a needle inserted in the port, and blood drawn. That blood will be tested to make sure my red and white cell counts are okay, and that I'm healthy enough for chemo. The needle will stay in until Saturday.

The insertion doesn't hurt much, and the nurse who usually does it is a nice guy who makes Shaun of the Dead references, so we get on well.

Here's how it looks:



After that, I meet with either my oncologist or nurse practitioner, and we talk about side effects, progress, treatment options, where to get great pizza in Inman Square, Nathan Myhrvold's Modernist Cuisine, etc etc.

And then I go up to the chemo unit, where my fabulous chemo nurse gives me anti-nausea medication, hooks me up to various bags of drugs, and organizes visits from the music therapist and integrative therapist. Meanwhile, we chat about everything from nail polish to home ownership to where to eat in Davis Square.

I get a cocktail of drugs that takes a few hours to drip through the IV into my bloodstream, and then sometime after lunch I'm hooked up to the take-home bag.

Inside the bag is a battery-operated pump (on the left below) and a bag of Fluorouracil, otherwise (and somewhat fittingly) known as 5-FU.



The pump is programmed to release 3ml of drug an hour. It makes a little whirring sound as it feeds the liquid through the tube and into the vein.

The bag isn't too heavy (and gets lighter as the week progresses). The main problem is really the hassle.

You know how some schools make kids carry an egg or a bag of flour for a week in an attempt to teach about the responsibility of having kids? It feels a lot like that. You can't go anywhere without the bag; it's almost umbilically attached to you.

Here I am, modeling the bag.



You have to be constantly aware of its existence and location, and whether the tube is likely to catch on the corner of a table or wrap around a door handle. Movements are pre-meditated: I'm going to reach for my coffee cup now, and the tube is below my hand, so it's okay. I'm going to keep my phone near my left hand, because it's on the opposite side to the tube, so I can grab it without worrying.

Bed time means setting up the bag on a side table, letting out an extra length of tubing, and arranging the sheets to avoid pulling on it during sleep. (And also piling books and cushions on the floor to prevent the cat from jumping on the bed and causing chaos).

Inevitably I need to get up in the night (I drink extra water during this week), which involves sleepily gathering up the tubing, shouldering the bag, and negotiating to the bathroom.

During the day, I spend a lot of time sitting in one place. I gather everything I need — laptop, tea, water, tissues, TV remote, book, snack — so I don't need to get up too much.

Damn, forgot my phone; have to get up again. Re-shoulder bag, check that tubing isn't caught, locate phone, sit back down, take off bag, check tubing.

And let's not even talk about the challenges of bathing while attached to an electrical gadget.

Maybe I'm too cautious about the whole thing, but I don't want to risk jerking the needle out of my chest. I heard about a female patient with a C-suite job who transferred her pump and drugs to a nice designer purse to disguise the fact that she was getting chemo, and my first thought was that's insane! What happens if she drops it?

(Not to mention that she'd either need to have a lot of tubing visible or sit in meetings with her purse on her lap, which says not so much "I'm a professional" as "I am waiting for a bus.")

As you can imagine, by the end of the week I'm antsy to get unhooked. If the bag goes on at 2pm on Tuesday, it will be empty at 2pm on Saturday, and by noon I'm bouncing around like a dog who's just realized his owner is holding a leash. Ohboyohboyohboy are we going to the hospital now? Pleasepleaseplease??

Once the needle is out, I feel like I've been uncaged. I can wave my arms around! I can multi-task! I can take a shower!

That lasts until I get back home, when fatigue takes over and I crawl into bed and stay there for the rest of the weekend. And then we go from Bag Week to Bad Week, when the mouth-ulcer side effects kick in and I'm sucking everything through a straw for the next five days.

Rinse, repeat.

Though with luck, this will be the last time through. Next stop: radiation. Again.

2011: A year in (tasteful, tasteless) review

Everyone else seems to be doing end-of-year lists, and I'm nothing if not a bandwagon-jumper, so here's my run-down of most memorable Things Consumed in 2011.

It's hard to do a rated list, because this year was a challenging one: Some things were painful to eat, some things had no flavor, and anything consumed in the last few months has been the Best (insert ingredient here) Ever, purely because I could taste it.

So instead of a Top Ten countdown, we'll go (mostly) chronologically.

Hospital food
In January, I spent a week on the cancer ward, and became a little too familiar with hospital food. I'll be honest: I find it hard to even look at the images in this post. Especially the last one. It took a while before I could enjoy a golden sunrise without thinking about processed cheese squares.

I have awesome friends
Why? Because they recognized that the best way to respond to my illness was by bringing me food. Precious few of their gifts were healthy (ha!) but they were suitably high-calorie and, of course, delicious.

Losing it
I can't talk about this year in food without mentioning the three-month period where I was unable to taste anything. Yes, it gave me a new appreciation for the subtleties of the palate and the distinctions between flavors, but mostly I learned that having no tastebuds is the opposite of fun. And it's very nice when they come back again.

Home cooking
Not a single incident, this one, but a variety of memorable dishes made at home. Or at the house we rented in Gloucester, where the vintage kitchen was a perfect place to make blueberry cobbler, lemon meringue pie, and beef Wellington (The Boy's birthday-meal request).

And also a great location for inviting friends to share steak with chimichurri, grilled chourico, and various salads.



Back at our apartment, I got into a baking Thing, and managed to fill the freezer with chocolate-zucchini cake:



and peach cake:



My intention with the latter is to save it for the crummiest winter day possible. Nothing better than eating summery peaches during a snowstorm.

British food
Between finishing treatment and going back to work, I had a small window of time to zip back to England so my parents could see all my limbs were still attached. Even though my tastebuds weren't completely recovered, I still managed to eat ev-er-y-thing.

Which includes the obscene Sunday lunch, including baby's-head-sized Yorkshire pudding, at the Toby Carvery:



My dad at the gravy station. STATION. Because one type of gravy is not enough.



Dessert was Eton Mess, a bucket of meringue, cream and fruit:



Celebrations
There were lots of reasons for good times (come on!), including The Boy's grandmother's hundredth birthday; the wedding of our good friends Eric and Nicki, with a fabulous reception at Oleanna; and my almost-completely recovered sense of taste, with an incredible dinner at Journeyman.

Honorable mentions
I don't write about everything I stuff in my face, obviously. But I do record a large quantity thereof. Delicious things I had to capture for posterity this year included:

This treat, almost (almost!) too gorgeous to eat, buttery with a hint of lemon, from The Cookie Countess:



Rich, sweet figs stuffed with peach brandy ganache and covered in dark chocolate from Capone's in Cambridge:



And a stunningly complex housemade fig vermouth at Island Creek Oyster Bar (very small-batch; there was only one bottle left when we tried this):



You know, despite evidence to the contrary, I feel as though I've been very lucky this year. Yes, there were long-drawn-out moments of suckiness, but there were also a lot of extremely fun times and reasons to be thankful, especially for The Boy, and for friends and family.

I'm also very grateful to everyone who posted supportive comments on this here blog; I'll probably never meet most of you, but your kindness meant a huge amount during a tough time.

So happy New Year — wishing good health, happiness and delicious food to all!

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.

They're coming baaaack ...

After weeks (or possibly months; I'm losing track of time) of everything tasting like beige cardboard, I've started saying things like this:

"Wow, it was a good idea to add a little cumin to the guacamole."

"Did they just throw a KFC spice pack onto this chicken?"

"I love when pork sausage has fennel in it."

Yes, please welcome my brand new baby taste buds to the world.

They're not all the way back yet, though, and sometimes I get fooled. Like the other day when I ordered an iced chai latte at Starbucks, and exclaimed delightedly to The Boy that I could taste sweet things again. He took a sip and winced (this from someone who likes Vietnamese coffee loaded with condensed milk).

"No," he said, "you don't have your sweet buds back yet; this is just an obscenely sweet drink. If you could actually taste it, you'd hate it."

Turns out the iced chai latte has 31 grams of sugar (the recommended daily allowance for women is 25g). A dead elephant would have been able to detect sweetness in that one.

I'm particularly happy that I'm getting my tastes back in summer, when there are so many good things to eat. After a winter of bean and root vegetable soups, and a spring in which I missed out on ramps and fiddleheads and shad roe, it's great to be close to a point where I can enjoy ripe peaches and tart cherries and sweet tomatoes.

The other day, we harvested our strawberries. Okay, it was only one tiny berry; the other 50% of the crop — that is, the only other berry — was nabbed by a bird. But that thumbnail-sized fruit was pretty much the best thing I'd tasted all year.

Needs more salt/sugar

I haven't posted in a while because, it seemed, there wasn't much to report. But that's not actually true.

My skin has healed up, and there's now just a heightened redness on my cheek to show where the radiation was focused. (Oddly, I've also lost some sensation on my face; I can feel my hand on my chin, but not the detail of my cat's fur).

My mouth is still pretty dry, and I carry a water bottle everywhere, a little obsessively, which makes me feel like Linus with his security blanket.

I'm tired, but less so each day, and I'm finding small projects around the house and in the garden to keep me active.

But on to important matters: how are the taste buds?

They're still mostly sleeping, it seems, but waking gradually. I'm more aware of certain flavors, though they're still dim, as if they're in the next room.

Sweet and salty stil do not register at all. I can sprinkle sugar right on my tongue and get nothing but the feel of the crystals as they slowly dissolve (very slowly, given my lack of saliva).

And I remembered something a friend said after he had finished cancer treatment and was just getting his taste buds back: that he could taste something and recognize it — oh, that's chocolate — but the recognition was not enough to make him crave a second bite.

At the time, I only understood what he meant in theory. Now I'm entering that stage, it makes much more sense. And I realize how much our enjoyment of food is related to how sweet or salty it is.

So I've been trying different foods to see what registers: a bite of cheese here, a strawberry there. Yesterday I tried a salted cashew. I definitely got a (dim) nutty flavor, but of course no salt. And unsalted nuts are just not as tasty as salted.

I also had coffee with a friend, and tasted a little of her slice of chocolate cake. Yes, there was a hint of chocolate, but without the pull of sweetness that fills the mouth and draws you back to the plate for another forkful.

(My oncologist has predicted that it could take four months — four! Months! — before I can completely taste chocolate again. I hope to prove him wrong.)

It's more than just the simple on/off of sweet or not. Flavors are one-dimensional, devoid of detail or subtlety. Load something with fresh herbs if you wish, or create a complex marinade, but don't expect me to react with more than, "Is this chicken? I think it's chicken."

None of this has dampened my interest in food, thankfully, or my desire to cook and eat. Next week I'm trying out an apple-maple-bacon cake for The Boy's birthday; I'm also waiting for a chance to try out these beautiful Chinese tea eggs.

And I just have to keep reminding myself that this is a temporary state. One day, I'm sure, I'll be halfway through eating something and suddenly realize I can taste everything.

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.

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.

Year thirteen: I am lucky

Thirteen years ago today, I stood in front of family and friends, held The Boy's hands in mine, and promised to spend the rest of my life with him.

I don't remember much about the ceremony itself, apart from these two things:

1) Our officiant began his sermon with the words, "We stand here today on the brink of war." This was news to us; had we been so busy with wedding prep that we missed a major event? Turned out we'd bombed some stuff in Sudan and Afghanistan, but it didn't develop into anything. Not that time, anyway.

2) When it was my turn to recite our vows, my use of the phrase "I choose you" caused The Boy to think of Ralph Wiggum on Valentine's Day, which brought on an unstoppable giggling fit. Everyone else thought it was nerves. But I knew. And I have not yet let him forget it.

What I don't recall is whether we mentioned anything specific about sickness and health in our shared promise.

In past anniversary posts, I've written recollections of things we've eaten during our time together.

This year, I want to talk about right now.

The past couple of months have been crazy, scary, strange, frustrating — and occasionally amazing. And The Boy has been at my side for all of it.

When I was in hospital for five nights, he stayed with me, sleeping on a fold-out couch, leaving only to go to work and then run home to shower and shave and feed the cat.

(That's [shower and shave] and [feed the cat].)

This is one of my favorite shots from that week. It's about 6am and there's a snowstorm raging outside (which is why nothing is visible through the window). I'm in bed, The Boy is working, and the nurse is in the bathroom emptying my hat.



Since we got the diagnosis, he has rearranged his schedule or taken time off work to take me to every appointment. He comes home with new types of yogurt for me to try, to keep up my protein. He collects my prescriptions. He makes sure I stay warm and rested and hydrated.

He doesn't complain when I wake up several times a night for water in- and output. He hugs me when I'm sad, calms me when I'm frustrated, understands what I want to say when my mouth is too sore for me to talk properly.

He has missed out on evenings with friends, not to mention the loss of our usual adventures with cocktails and good dinners. He has shouldered more than his share of snow shoveling, housework, and general stress.

There aren't enough ways to describe how much I love this man.



Happy anniversary, sweetie.

I am what I eat

Before I started Round Two of chemo, I made a point of eating ev-er-y-thing in sight; my friend Jean observed that I was like a bear preparing for hibernation, piling on the calories for the time when I wouldn't feel up to chewing.

Right now, I'm coming out the other side of what I'm starting to think of as Bad Week, when mucositis hits and the best I can manage is taking tiny sips of liquid.

And I do feel like a bear, emerging from its cave cranky and ravenous (if less hirsute), ready to get back to living.

This morning I got to leave the house to get groceries.

It's amazing how a once-mundane task is now a major highlight. That's partly because 1) I don't go out much at all these days, unless it's to go to hospital, to be stuck with needles; and 2) getting to choose my own food is one of the few areas of control I have right now.

That sounds dramatic, I know.

But look at it this way: My schedule for the next few months is in the hands of my health care team. They decide where I'm supposed to be, and when. Their decisions affect how I feel from week to week, according to the chemo cycle. And their treatment plan has changed my appearance: hair loss, a little weight loss, drier skin — oh, and the new scar and alien-implant bump under my skin where my port was installed. They're pretty much in control of my body.

So as much as possible, I want to be in control of what I feed it. Which means a trip to the grocery store, odd as it sounds, becomes a way to reclaim my identity.

We arrived at the store early to avoid the crowds of germ-laden shoppers. The winds were strong enough to wrench shopping carts from their stacked line and send them rolling across the parking lot. I was glad I decided not to wear my wig; I had visions of me chasing it down the street, probably accompanied by Yakety Sax.

Naturally, once inside the store, I wanted to buy everything, especially the things I'm not quite ready for. Anything crunchy (carrots, crusty French bread, nuts) or acidic (orange juice, tomato sauce) or potentially hazardous (smoked fish, molded cheese) suddenly looked reaaally good.

But thankfully reason, in the shape of The Boy, reigned me in and coaxed me away from loading the cart with Stilton and baguettes and grapefruit.

Instead we picked up stuff to make a few meals that would sate my need for normalcy while also keeping to the high-protein mandate: turkey and black-bean chili; meatloaf (to be served with loaded potatoes); fish (to be served with, ahem, spinach with bacon dressing).

Next week is my Good Week.

I warn you now: do not leave any pic-a-nic baskets unattended.

Protein, music, new hair

Round Two of chemo was last week. This time it was outpatient, which meant one full day at the hospital being pumped with drugs, then a half-day of hydration (being pumped with saline), and then two more days at home, toting a fetching shoulder bag that held a battery-operated pump hooked to a smaller bag of drugs hooked into a vein in my chest.

The upside of home chemo is obvious: rather than spending days in a hospital environment, with its ongoing chorus of beeping machines and people monitoring your pee (how much and how often), you get to veg out in your own bed, eating your own food, watching whatever awful movies you feel like.

On the other hand, the nice thing about being in the hospital is the wealth of resource specialists that come to visit. (I admit that I've pretty much thrown open the doors and said I'd be happy to meet with anyone who's around. It's as much professional interest as personal need.)

So Tuesday was auricular acupuncture (that's needles in yer ears), which was interesting, though I don't know whether I was supposed to feel different; an insanely good massage from a guy with big, warm hands; and art therapy (we made Valentine's Day cards with stickers, which was delightfully like being in daycare).

On Wednesday I had a great chat with nutritionist Carol Sullivan. One of the most important things she pointed out was that I should be getting at least 75g of protein a day, or 130 percent of the RDA.

She broke it down into portions: an ounce of chicken; 2 ounces of feta; a cup of ice cream; a half-cup of black beans each count as about 8g of protein. But that still seemed like a tough task — I don't eat huge portions at the best of time, and certainly not when I'm under the weather. How was I going to get through four and a half cups of beans a day???

As it turned out, it was easy. A cheese omelette for breakfast, plus a fruit smoothie with Greek yogurt, took care of around 24g. Baked beans and cheese on toast for lunch (or an Anna's Taqueria chicken taco with beans and sour-cream-filled guacamole) knocked out a few more. With an afternoon nibble on cottage cheese, poached fish for dinner, and a late-nite ice cream snacky, I was doing well.

And once I realized that Odwalla does shakes with double-digit protein counts, that made things even easier.

Wednesday was also my second music therapy class, which I continue to love.

And today I had my remaining hair shaved off and got a kinda kicky '60s wig.

Those last two sentences come together in the following video, my first attempt in iMovie. Enjoy!

Raw fish candy time!

One of the downsides of cancer treatment is that certain yummy things are off-limits, particularly those that could carry a risk of food-borne disease. These include raw veggies that aren't easy to wash well (raspberries, lettuce, etc), as well as lovely raw things like oysters and sushi.

Luckily, today I discovered a solution to the latter.



It's candy! From Japan! That magically turns water and chemicals into cutely realistic, teeny-tiny tamago, naguro and ikura!!

Did I mention it's from Japan?

Liquid lunch, but not the fun kind

So far I've been extremely lucky as far as chemo side effects are concerned. Apart from a short dizzy spell early in the week (for which I have happy little brown pills), everything has been fine.

Well, more or less.

Every day brings a slight change: On Monday I felt great, and ravenous, eating everything I could get my hands on (especially good cheese; need I remind you of the orange Americana served for breakfast in the hospital?).

Tuesday started out okay, but late in the afternoon it felt as though someone had snuck into my mouth with steel wool and started scrubbing.

That night, The Boy made a delicious-smelling stir-fry, but I could hardly bear to have anything touching my tongue.

Yeah, this is a thing that happens. Mucositis.

See, chemotherapy works by killing cells that grow and divide quickly, which includes cancer cells — but also many other types of fast-growing cells (which explains why hair loss is often a side effect). Among the fastest-dividing cells in the body are those in the mouth and throat, which makes sense: they're constantly being scraped away by food, so have to bounce back quickly.

You know when you drink, say, really hot soup, and you take the roof off your mouth? It feels like that, but (as I'm learning) it takes more than a day or so for the cells to recover.

And one of the main challenges is dryness. I'm now carrying a water bottle everywhere, and waking several times a night, painfully parched, to chug from it.

So what's a girl to eat?

At the beginning of treatment, my nurse practitioner recommended stocking up on Ensure Plus. We dutifully picked up a six-pack of Creamy Milk Chocolate flavor; my intention was that it would be for emergencies only. Because, really, have you seen the ingredients?



Here's what Wikipedia says about some of those ingredients:

Choline chloride "is mass produced and is an important additive in feed especially for chicken where it accelerates growth."

Sodium molybdate "is used in industry for corrosion inhibition ... It will explode on contact with molten magnesium. It will violently react with interhalogens (e.g., bromine pentafluoride; chlorine trifluoride). Its reaction with hot sodium, potassium or lithium is incandescent."

Potassium iodide "is a precursor to silver iodide (AgI) an important chemical in photography. KI is a component in some disinfectants and hair treatment chemicals."

Mmm. Something my body needs anyway.

But at this point, attempting to eat pretty much anything else was an ordeal. The leftover bean-and-kale soup that had been delicious on Monday night now felt like gravel, even after I whizzed it in the blender. Yogurt was better (especially frozen), but required some amount of tonguework, which I was not up to.

Okay, Ensure. You win.

But even in my debilitated state, I couldn't just chug it from the bottle. That is not how I roll. So I stepped it up.







Okay, it's not terrible. Sweeter than I would prefer, with an odd, chalky aftertaste; it's not something I would seek out for its taste sensation, but if you have to keep calories up somehow, there are worse things. Apparently it comes in other flavors, Strawberries & Cream and Butter Pecan (eww!) among them; I don't have an urge to experiment. Yet.

The worst of the discomfort lasted about two days; by Friday I was here:



(That's white and sweet pureed potato topped with Heinz baked beans and cheese)

And by Saturday lunch I was here:



(That's strawberry shortcake and tiramisu from Modern Pastry, thanks to Lovely Co-Worker Sarah).

Hospital food: the good, the bad, and the cheesy

Wow - first of all, thanks for the fabulous, supportive comments on my previous post! It means so much to know you're out there rootin' for me.

So: hospital food. Is it really so bad?

Well, I've now had seven meals on which to base an opinion. Among the best:

A perfectly acceptable salade Niçoise with everything but the capers. (I'm not sure that tomato is authentic, but we'll let that slide.)



Very juicy baked chicken (though the gravy, which claimed to be "the best!", was not).



Chocolate pudding!



Tapioca pudding!



Lime Jell-O!



The overall theme, if there is one, is New England diner: comforting, under-seasoned dishes. Which makes perfect sense for a Boston hospital — when you're sick, you don't want challenging dishes; you want something homely and recognizable.

But when you're feeling pretty much okay, even after two full days of induction chemo (thanks to powerful anti-nausea drugs), it's hard not to lose your appetite when faced with:

A dry, congealed turkey pot pie, in which only the peas are salvageable:



Turkey dinner with sad cauliflower au gratin and more of that the best turkey gravy:



This morning's Cheesy Scrambled Eggs (American cheese, of course, two corners of the square still resplendently unmelted):



The golden glow on its pasteurized surface came courtesy of the much more natural, glorious, sunrise:



I know I'm coming across as a food snob here (well, that is my role). So I also need to say that I completely understand the scale of the undertaking.

The hospital has one central kitchen, from which meals are shipped to various buildings and reheated at serving time. It's much more cost-effective to use frozen or canned vegetables, and soft, over-cooked food is easier to digest (though of course it loses nutritional value along the way). And the cost for The Boy to have an in-room, three-course meal with me is around $8, which, let's face it, is amazingly cheap for Boston dining.

My awesome nurse has been helpful at pointing out things to straight-up avoid: the burger, and anything fish, are two of her tips.

But I'm now at the point where I can read an item on the menu — Kung Pao Pork, say, or Spaghetti with Meat Sauce — and have a pretty good idea of what I'm going to get.

Which is why The Boy is bringing me something from Anna's Taqueria tonight.

Oh, and in case you're wondering whether sick people are fed the same way everywhere, here's a lovely gallery of international examples of hospital food. Japan looks to be a winner here.

A temporary new direction for LimeyG

Got some interesting news this week: I have squamous cell carcinoma in my mouth. It's very treatable and has a high cure rate, which is good. The bad, of course, is that treatment is aggressive and sucky: two or three rounds of intense chemo, followed by seven weeks of radiation.

So what do I have to look forward to? Loss of appetite, changes in my palate, zapped tastebuds, zapped salivary glands, a raw tongue and throat.

Yes, there are a ton of other side effects, but whatever. These are the ones that bug me the most; what will life be like if I can't enjoy food?

Well, let's find out. I'm going to keep writing throughout the experience, as much as I can. I want to try and apply the same approach to this period of eating adventures as I do to any other.

If you're willing to stick around and come with me, I'd love the company. If you've been through something similar and have food-related suggestions and tips, please share.

And if you want to take a break, that's also cool. I hope you come back for the post where I describe being able to taste things again (I'm looking forward to that one!).

I start treatment on Tuesday, so we'll begin with a dissection (!) of hospital food.