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Has anyone seen my mind? November 18, 2009

Posted by PAS in cancer, survivorship.
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The human brain

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I was reading the NYTimes Well Blog for Nov. 17, where Kairol Rosenthal of Everything Changes guest-posted about the frustration that comes when cancer patients have to deal with fogged brains altered by radiation, chemo and the long haul that is modern cancer treatment.

So often, survivors who are experiencing loss of focus and chemo-brain hear comments like “You think YOU’RE forgetful? Last week I couldn’t find my car in the parking lot.” My favorite well-meaning comment is “You couldn’t remember why you came into the room? That happens to everyone!” I swallow the reply I want to snap back: “Oh, really? Everyone forgets why they’ve walked into every room, over and over and over again all day long?” Instead, I nod, or shake my head, or smile weakly and try to move the conversation somewhere else.

The person who is trying to make me feel better by promising that forgetting things happens to everyone has no idea what it’s like to lose the details of my life. They may be momentarily disoriented when they forget where in the two-acre Wegmans parking lot they’ve parked; I freeze and dissolve in panic. Because that frozen moment is so paralyzing, I try to park in the same general area every time, go in the same door, make the same circuit around the supermarket. Routine is not just my friend; it’s one of many finely honed coping mechanisms on which I depend to keep some shreds of normal in my day.

But cancer wasn’t my first experience with the sensation of misplacing my mind. In 2000, I had an intracerebral hemorrhage – and the after-effects of that illness are things I still feel, things with which I’d learned to cope but which were worsened by chemo and treatment. Two years after the stroke, I had a neuropsychological exam (NPE) – a face-to-face IQ test on steroids that is conducted in three or four appointments spread over two weeks. That test was brutal – both the experience, and the results, which showed me both where I was still ‘stronger than average’ as well as where I was now weaker. Most shocking, to me, is that in areas where I felt I was clearly having difficulty, I was till rated ‘stronger than average.’ Clearly, I still had some skills, but my altered brain and self-image had a tough time recognizing those skills and using them to compensate for new weaknesses.

I had gotten insurance approval for the NPE after struggling for two years with sudden emotional shifts, flooding, inability to handle crowded or noisy places, difficulty tolerating stress, difficulty focusing and concentration issues. These and other post-stroke side-effects made me self-conscious about my skills as a teacher and my abilities as a research supervisor. I stopped volunteering as a medic for a few years after the stroke, telling the emergency team that I was no longer physically up to the job. The real story was that I was terrified that I’d lose focus during an emergency and forget something critical, compromising a patient.

With the help of a terrific counselor, I was able to devise coping skills that let me get through the day with a minimum of ‘visible’ effort. I cribbed some of them from an amazing account of traumatic brain injury (TBI) rehabilitation written by Claudia Osborn, MD. Out for an evening bike ride, Osborn was hit by a car – but it took several months before her TBI was correctly assessed. She began rehab, and as I read her story, “Over My Head,” I was struck by how similar her TBI side effects were to my own post-stroke issues. I researched Osborn’s rehab, TBI and its cousin acquired brain injury, discussed an NPE with my counselor and doctors, and the rest was history.

Then I got cancer. And four months into cancer, I had two smaller hemorrhagic strokes. I was terrified to continue chemo, terrified to stop it. Surgery for liver metastases was now off the table. I was officially downgraded from surgical candidate to palliative care, and wouldn’t be reconsidered for surgery until I’d logged six more months of brain recovery. My oncologist listened and questioned me as I explained to him how scary it was to have to assess and evalute my escalating symptoms and side effects after each treatment, explaining how the side effects of stroke and of chemo are often exactly the same. Somehow I needed to learn how to tell the difference, to know when to call the oncologist’s office, when to call 911, and when to do a round of finger exercises, take a breath and try to relax. When to accept that it was just the chemo stealing a few more brain cells – and not an actual stroke blowing them out of commission.

But at the end of the day, five chemos past that summer of 2004, I’m not sure which was worse – waking up from a stroke unable to recognize the numbers on the telephone, or seeing the open refrigerator door and realizing that I’d left it open again (how long? oops, maybe all night!) At the end of the day, the brain cells are still missing in action, and here I am, wondering in which storage room I have accidentally checked my brain

I still swallow, hard, when someone tells me “Oh, hey, if this is one of your bad days, give it to me. You’re sharper on a bad day than most people are on a good day.”

Maybe. But it’s hard to believe that when I usually feel like I’m running as fast as I can just to stay in place.

Have you noticed that you have trouble focusing, concentrating or remembering things since your cancer treatment? Does it happen often, or only once in awhile? How are you coping with these slips?

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Cooking on through it all November 15, 2009

Posted by PAS in food, survivorship.
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NYC - Chelsea Market - Food Network

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In 2003, after two years of low-carb eating, I compiled the recipes and drafted a cookbook called ‘Notes from Gaelen’s Kitchen’ – my mostly meatless collection of whole foods low carb recipes, many inspired by my collection of ethnic vegetarian cookbooks.

I wrote chapter introductions and recipe notes, and started the most laborious part of cookbook writing: testing recipes over and over to be sure that anyone who could follow directions could reproduce the recipes in my cookbook, first time every time.

And then came April, 2004. Stage IV rectal cancer, metastasized to my liver. Chemo, that made everything taste like metal. It was hard to even watch cooking shows – when the sight of food brought on nausea, actually cooking it and tasting it over and over was out of the question. Eating assumed, of course, that I could taste food. But for most of chemo #! (Folfox: 5FU, Leucovorin, Oxaliplatin + Avastin), chemo #2 (Folfiri: 5FU, leucovorin, irinotecan + FUDR infused directly into my liver) and chemo #3 (a modified dose of Folfiri), I couldn’t taste much of anything unless it was sour (think lemonade without much sugar) or very spicy (hello, siracha!)

Although I won several cooking contests at the New York State Fair during 2004, 2005 and 2006, I was cooking from memory and from gut feelings about how the ingredients would taste when I made those recipes. I was not improvising with food – I was putting together trusty favorites and sending them to the judges. My palate was in no shape to create new recipes, or test recipes to make sure that everyone could follow my preparation directions. A few days ago in my review of Rebecca Katz’s cookbook, I joked that my tastebuds went on strike during chemo. Most days, that was true. Looking back, I ate a depressing amount of fast food (yes, Taco Bell!), frozen ready-to-heat meals, and food from the Wegmans prepared foods case – anything to avoid having to handle raw foods and cook things for myself from scratch.

During 2004, the Food Network ran its first ‘Next Food Network Star’ competition. Top Chef debuted its first season that year. Part of me wished that I could have auditioned to be the next Food Network star – but facing terminal cancer, I knew I couldn’t handle the pressure involved in a reality cooking show. After all, during state fair week, I only managed to prepare half of my entries, and some days didn’t take in food at all. So since I couldn’t cook, I watched (but only on my off-chemo weeks!)

I put my own cookbook writing aside and focused on living through my chemo treatments and recovering from two abdominal surgeries. After cancer, I had to re-learn how to eat, finding new lower-fiber foods to satisfy my preferred low carb diet. But I drew a line and said ‘this I cannot do’ about cooking and developing recipes. I cooked only what I needed. I stopped inventing new things, trying to puzzle out tastes from others’ recipes.

Tonight, I watched Chef Seamus Mullen, chef-owner of the two Boqueria restaurants in NYC, competing in a semi-final episode of Food Network’s ‘Next Iron Chef‘ reality cooking competition. Mullen has been a strong competitor throughout, and had made it to the final three contestants. In this episode, obviously in pain, Chef Mullen limped through the hour-long shopping expedition, and the two-hour prep time, and his presentation to the judges. Despite obvious pain, he stayed focused on his dream of being the next iron chef. He refused to let anything get in his way, even a serious flare of his rheumatoid arthritis that several times caused pain difficult enough to stop him in his tracks.

I was humbled, watching Chef Mullen continue to work no matter what. I was humbled even though in this round, he was eliminated from the competition.

And out of respect for Chef Mullen’s efforts, I’m dusting off my recipes and my cookbook notes.

I will not permit cancer, chemo, surgery or pain to continue to interfere with the essential things which define me – and cooking is one of those essential things.
I don’t know when I’ll finish ‘Notes from Gaelen’s Kitchen,’ but I have put some new ingredients on my shopping list and pulled some recipes to test, and writing is no longer on my creative back burner.

Be in harmony with your expectations. – Chinese Moon Festival wish

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Amuse my tastebuds, please! November 12, 2009

Posted by PAS in cancer, food, nutrition, survivorship.
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Salem Diner menu

Image by Teckie Kev via Flickr

amuse-bouche [a.myz.buʃ] a single, bite-sized hors d’œuvre. … These, often accompanied by a complementing wine, are served as an excitement of taste buds to both prepare the guest for the meal and to offer a glimpse into the chef’s approach to cooking.

I’m a self-professed foodie – a person who reads my 300+ cookbooks like novels, creates new recipes based on favorite tastes, prepares a dish over and over until I get the taste(s) right, treasures memories like the special lunch I enjoyed at Bolo in NYC, one of Bobby Flay’s first restaurants (now closed.) My tiny kitchen’s cabinets are covered with 25 years of state fair culinary competition ribbons. For me, the amuse-bouche – that single mouthful that sings with taste – is my cooking goal every time I sharpen my chef’s knife.

The first thing the nurses warned me about in chemo teaching is that my tastes would change while on chemo, food and smells might make me nauseaus, and patients were often unable to eat their favorite things because the medicine(s) changed their taste preferences so dramatically. Every chemo is a bit different, but palate-numbing is a common denominator.

While I was on chemo, my tastebuds went on strike. On the day of an infusion, I craved – watermelon. Lemon. Taco Bell. Seriously, Taco Bell. Good Mexican food was wasted on me, but the heavily salted stuff from borderline drive-thru tasted wonderful, complete with fast-food guacamole and pico de gallo. Not fresh, not organic, not seasonal. But I could *taste* it. I’m not proud to admit that a cheap beef taco was often the last real food I could manage before the chemo nausea kicked in. Days 2-14 after infusion, I had the appetite of a finicky toddler. Smells of fresh, raw or cooking food might make me hungry, or make me sick. It could literally go either way. During those days, I did find some solace in my 70s comfort food: Cauliflower Soup from Mollie Katzen’s Moosewood Cookbook, Garlic Broth from Anna Thomas’s Vegetarian Epicure, and homemade pierogies from my friend Kim, or from the ladies auxiliary at the Ukranian Church got me through those days.

When chemo ended, my tastebuds limped across the chemo picket line – and some of them had clearly developed attitude problems. Spicy foods threw them into revolt. Salt levels were hit or miss. Sour tastes, fresh fruit, and creamy vegetable tasted usually tasted good – but not always. Lemon, which I don’t love, always worked during chemo and continued to work when it was over. Salmon, a pre-chemo mainstay, tasted too strong now, but smoked salmon was terrific Pepper became critical in every dish. After the end of each chemo regimen, it took me months to get back the palate sensitivity on which I’d always depended.

I examined some cancer cookbooks during treatment, but all were uniformly disappointing. I know how to make ingredients sing, make them amuse my tastebuds and incite my appetite – but the smells of cooking and the handling of raw foods often made me ill. I used a lot of premade and frozen foods while on chemo, but wondered how other patients handled the utter lack of taste in most of those cancer ‘cookbooks.’

What I would have given for a copy of One Bite at a Time, Rebecca Katz’s amazing cookbook subtitled ‘Nourishing Recipes for Cancer Survivors and Their Friends.’

If you only make one of the 20 soups Katz includes in this cookbook, it will have paid for itself. A beautiful, simple and basic vegetable stock called Magic Mineral Broth (TM) will add magic to any soup, vegetable, rice, pasta or grain where it’s used. Other recipes include Carmelized Red Onion soup; Taxicab Yellow Tomato Soup with Pesto – I could go on, but these are recipes you should discover for yourself. If you’d like a taste, check here for Katz’s online recipe selection. It includes another of my favorites from One Bite at a Time – Flourless Almond Tortes.

Food on chemo can be a challenge for both the patients and caregivers – but the recipes in Katz’s book are real food designed to deliver high taste and high nutrient value. You don’t need to have cancer to need that. Enjoy!

What was your favorite food during chemo? C’mon, admit it. After all – I admitted to Taco Bell cravings…how much worse could your craving be?

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