The feeding tube and the desire to pound orange juice

See this here egg?



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

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

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

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

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

Until the orange juice.

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

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

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

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

Hm. Is that all there is to juice?

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

Obsession over.

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

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

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

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

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

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

Wish me luck.

End of the line

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

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

"One month," I said.

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

one month.

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

So. Here we are.

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

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

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

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

Here are some things I have done:

Canoodled with wolves;

Eaten a ten-course lunch in Madrid;

Patted the tongue of a friendly Beluga;



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

Seen the Grand Canyon;

Helped train harbor seals;



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

Seen Paris from the Eiffel Tower;

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

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

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

Lounged on a nude beach;

Made vermouth from scratch;

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

Made people laugh;

Baked my own bread;

Known real love.

Feeding time

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

Yep, I finally succumbed to the feeding tube.

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

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

Ha.

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

Oh, that's what a fever feels like?

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

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



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

Until it wasn't.

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

So it was back down to surgery for a refit.

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

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

This was what actually being stabbed felt like.

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

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



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

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



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

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

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

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

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

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.