If you’re reading this, you probably think of me as someone who obsesses about food. And you would not be wrong. I have always, ever since I can remember, thought a lot about food: about the preparation of it, the serving of it, and the eating of it. It has been, since I was very small, one of the major joys of my life. The joy came from the everydayness of it. I love my everyday life. That was a huge part of it.
Then I got cancer.
Not just any cancer. Throat cancer.
And treatment to the throat for cancer means it gets harder and harder to eat.
We’d caught it early, Stage One, thanks to a hero lymph node that popped out and yelled, ‘Look at me!’ one night while I was in the bath. So the doctors were pretty sure they were going to cure it, and who was I to say otherwise? I had support at home, with a husband and dogs who insisted on accompanying me to every doctor’s appointment. I had friends galore who checked in the way you want friends to check in when you have a terrifying illness. I was pretty sure I wasn’t going to die at the end of it. And the doctors tell me it’s gone now.
I was lucky, is what I’m saying.
The treatment was going to be grueling, the doctors said. I needed a way to deal with it.
My strategy was to hang on to my daily round as much as possible. My theory was that if I kept up my usual schedule and habits, only letting them be knocked down by the necessary protests of an overworked body, all the easier it would be to return to normal life after the treatment ended.
The one thing I dreaded above all else was the predicted loss of ability to enjoy my food. Especially the bit where the nurses told me I was going to stop wanting to eat. Stop wanting to eat? How would I even know who I was? What about my everyday life? What would happen to that?
My radiation doctor gently told me I would need a feeding tube, since I wouldn’t be able to take in enough nutrients by mouth to keep my weight up. I’d need that in order to fight the cancer and help the treatment.
I looked at him. “No,” I said, just as gently as he. “I don’t think I’ll have a feeding tube.”
I mean, I couldn’t imagine it. Taking in food by a tube. And not even real food. Just liquid vitamins. No, no, no. I wasn’t having that. How would I get back to eating normal food after months of that?
My doctor was taken aback. He said he’d been a cancer specialist for twenty years, and all that time, only two of his patients had refused the feeding tube. “And one of them told me if anyone else said they didn’t want one, just to send them to him and he’d set them straight.”
I was polite. But I was firm. No feeding tube. I hung onto that. I was going to stick to it no matter what. I didn’t want to forget I was a human body that loved human food.
I mean, I didn’t just love food. I loved my life. Up in the morning, feed the dogs, two cups of my special Tod’s Blend tea, lie in bed thinking about the day, up to breakfast, out to my office, walk the dogs and the husband, make lunch, eat lunch, out to my office, another walk for the dogs, feed the dogs, think about dinner, make dinner, eat dinner, read, bath, bed.
I loved every minute of it. But now, slowly, over the next few months, those minutes degraded. I spent more time in bed in the morning. I couldn’t face more than a little breakfast, though I forced myself to eat protein of some kind.
Bit by bit projects slipped away as I was unable to take care of anything but the most important to me—no surprise, that meant my own work, but also a writing job I was passionate about. Neither of those failed to engage me, though I was much slower and much more tired after working on them. Even my journal juddered and slowed. I don’t think I wanted to write down how I felt. I just wanted to get through it.
My dog walks in the forest got shorter and shorter. I learned that I had to drag myself to a certain point above the meadow so the dogs were fooled enough to continue on the whole mile circle without me, meeting me back at the house where I’d turned back. Sometimes they weren’t fooled, just concerned, and ran back to check on me, following me back. But a lot of the time I could get them to go on their own. It became kind of a game.
Lunch and dinner began to be a torture. At first I would drag myself up to try to make sure my husband got a good meal, even if I couldn’t eat much of it myself, since I knew what would happen if I didn’t. (And it did. He ended up eating camping food for about two months, with bad results for his own health). At first we’d set the table the way we always did, light the candle for dinner, sit down together even though my plate held a pathetic amount of something weird. I tried to make it look appealing, my theory being that the more eye appeal, the more likely I was to finish what was there.
That worked for awhile. Then I lost the ability even to manage that. Instead I’d sit alone trying to get down what I’d promised my husband I’d eat that day. I didn’t always succeed. Sometimes I snuck back to the kitchen to hide what I hadn’t finished. I had to throw a lot of food away, and that was so unlike me, the waste. But there was nothing else to be done. No one else could eat the food once I’d touched it. They’d told me the chemo drugs were too poisonous for my husband or my dogs.
I took to experimenting with what I could eat. I used, as I always had, the voice of my body to guide me: what did it want?
It wanted odd things. Some days it wanted soup. One day it wanted popcorn with a lot of butter. A few mornings it wanted toast with lots of butter and cinnamon sugar. That was weird. I wasn’t usually a sugar person, but now the only sweet that tasted bad to me was the one I’d always loved: honey. I craved maple syrup. White sugar. Of all things, as my taste declined and almost disappeared completely, the only thing that tasted like I remembered was See’s candy, marzipan in dark chocolate. Why? I have no idea. But I must have eaten three boxes full, and I still go in and order it by the cartload, though now, thank the Goddess and Mary See, I can taste other chocolates as well. (Bordeaux! Coconut Special! Maple Walnut! Yum.)
The worst, absolutely the worst, was not being able to taste my morning tea. That’s the only loss that actually made me cry. I kept drinking it doggedly anyway. Until the metallic taste wore me down, and I switched to a cheaper tea bag. Why waste the good tea?
That was such a sad moment.
The doctor and nurses asked if I wanted a nutritionist to talk to me. No, I said doggedly. I’ve written two cookbooks and read countless others, and I already knew what they would say. I’ll handle this on my own.
“If you lose more than fifteen pounds,” they warned me, “we’re going to have to insist.”
“Okay,” I said. But I had a secret plan to thwart them.
What they didn’t know, and in fact even my husband didn’t notice, was every time I went in to an appointment, and the nurse weighed me, I was weighed down with winter clothes. The first time I took off all the heavier stuff, and they got a fairly accurate weight. But as the weeks went on, I took to wearing extra sweaters, a scarf, boots. I kept on my winter coat. I had things in my pockets. I wasn’t going to let them know I was losing weight.
It made me laugh at the end of treatment to see the official word was I’d lost ten pounds. In reality, I’d lost three times that much.
It frustrated my husband. At first he would get angry at me for not eating. But when I didn’t get angry back—for who had the energy?—that slowed his anger and then stopped it altogether. He said he realized how stupid it was to be angry for something I couldn’t help. I said I understood. If I couldn’t fix something harming him, it would make me angry too.
Imagine not being able to make Tod eat. It must have been like being trapped in a dreamscape for him. It must have been like a different person than Tod.
He started taking me to the market and urging me to buy things he, a vegetarian, had never urged before. Liver. Steaks. Pork chops. Butter. Full fat anything. He would take me out for sushi, arrange three pieces on my plate and insist we weren’t leaving till I’d eaten them all. It was horrible, but I managed it.
We managed it together. And we both started to change. We got closer. And more hopeful. He started to love his everyday life too. Even when it meant helping a sick wife get through. He said it was especially because of that.
Slowly, after the treatment ended, things started to come back. They weren’t entirely the same. They still aren’t entirely the same. But I’m more myself every day. I even like this version of myself more. I go slower. I needed to learn that before. I enjoy what I can eat even more.
My doctor was amazed I never had the feeding tube. He couldn’t get over it. He kept muttering to himself about it. That made my husband laugh. He was so proud of me.
I went back to being the house cook. I practically wept with relief when I was able to plan and shop for meals, cooking lunch and dinner, making the dogs’ food, making my husband’s morning granola and yoghurt. I had loved that before. I love it now. I still love thinking about food, and slowly, food is coming back to taste the way I think about it.
The first time I could really taste something, aside from See’s marzipan, was about a month after the treatment ended. We were in a brewpub, waiting for our lunch, and unasked, they brought two little samples of a special stout. “It’s got tastes of rum and chocolate and coffee in it,” the waiter told us proudly.
He watched us for our reaction. I didn’t want to disappoint him, and I thought, well, why not? I shrugged and took a sip. And almost screamed.
My husband, startled, said, “What?”
I said, “I can taste it all. The rum. The chocolate. The coffee. Oh my god.”
The waiter was happy. So were we.
That was the start of when we knew my taste would come back.
And my walks came back. First I didn’t need a stick. Then I did my pre cancer two miles a day without getting out of breath.
My ability to work came back. At first, it was exhausting to write 2000 words in a day; that was about all I could do. I’d have to rest the next day. But slowly the rhythm returned. If anything, it came back better than before. Going slower, I discovered, meant I could do more, better. Who knew?
The basics of my everyday life came flooding back. The important ones. My work schedule. My cooking. My daily walks. My friendships. Most important of all, my family. My husband and my dogs. My husband says he discovered something too. “That nothing else was really as important as you,” he said. “And the dogs.”
I tell him it was practically worth getting cancer for that.
My taste comes back some days, and recedes others. For most foods, it’s at about 85% of what it was. But my morning tea, alas, still tastes like metal.
So for this Jam Today blog post, I’ll describe what the tea should be like. In hopes that it will be like that for me again. And maybe be like that for you.
It was my one real luxury before the cancer. I’d had a blast experimenting with different blends until I found just what I wanted, which was an English Breakfast type tea, but with a flowery lingering taste.
We have a wonderful teashop in Ashland—Dobra Teas. Nicole, who owns it, was fascinated watching me find what I wanted. I fiddled with sample ounces of her teas until I got it just the way I wanted it. They call it ‘Tod’s Blend’ there, although it has yet to go on the menu (how about it, Nicole?). I ordered it by the bag, all mixed up together. Two parts of Keemun Black, which is, like it sounds, a deep, almost smoky tea. Two parts of Assam Brahmaputra, a medium one with soothing aroma. One part of Darjeeling First Flush the most flowery of black teas. Mix together. Steep in boiling water. Pour. Savor. Enjoy to the top of your bent teawise.
It tasted, I remember, of the very best black tea I’d ever drunk, with a bit of Spring in the mountains thrown in. The perfect way to start any morning.
For months after I realized its taste wasn’t coming back any time soon, I just drank tea made with Tetley’s tea bags. What was the use of drinking Tod’s Blend, I thought, depressed. But now I drink it again, with a second cup made from the leaves of the first, where before I’d always have a fresh cup. It still doesn’t taste the same, and I don’t like to waste it. Why waste when I’m trying to retrain my taste buds to love it again? Because my strategy is still the same, even if my abilities aren’t. Keep doggedly doing what you love, and maybe, bit by bit, it will all return. If not exactly the same, then different. If you’re lucky, maybe better.
For Tod’s Blend, contact Dobra Tea. Most of the young women there will know what you’re talking about, but if they don’t, just say: 2 ounces Keemun Black, 2 ounces Assam Brahmaputra, 1 ounce Darjeeling First Flush. All mixed together in one bag.
And enjoy it. Enjoy everything in your life. Don’t waste time while it’s still here. Don’t waste any of it. As you know, I hate waste.