Appetite

Not having had an appetite for much of the last six weeks (chemotherapy), but especially the last three days (stomach virus), I woke up during the night thinking about appetite, and writing a post on the subject. Also, I was talking with Tia last night, and we were commiserating about the lack of appetite, and how hard it is to eat when nothing tastes good.

Where does our appetite come from? Most basically, it's an element essential to human survival, ensuring that we get the food and beverage needed to sustain life. Why does appetite change? Illness, certainly, and as so many of us know, the treatment for cancer known as chemotherapy. With so many of us in the U.S. struggling to keep our weight under control, when faced with a dizzying array of possible, delectable things to eat and drink, it's a bit strange to be thinking about appetite and lack of it. But for those of us with cancer, and those of us undergoing chemotherapy, lack of appetite is very real. It's not just nausea, although that's part of it, it's that even when we eat, things just don't taste that good.

For most of my life, I have loved to eat. I love the smell, texture, taste of food, and I enjoy cooking and baking. My first extended period of detachment from the joy of eating came in 1995 when I contracted dengue fever after a church mission trip to Nicaragua. (At least I assume I had dengue fever, although it was never confirmed by a lab.) Fever, nausea, vomiting, diarrhea, lots of the same symptoms of a stomach virus, but it just didn't quit. I was pretty sick for three weeks, and got better only slowly. As I recovered, I found I was only interested in "white food" - potatoes, pasta, bread, bland food. I would watch others eating, and would remember, distantly, enjoying eating, looking forward to meals. It took a long time for my previous relationship with food to return. My experience with chemotherapy is more like that experience with food and lack of appetite than any other I've had.

In researching this post, I learned that there is a scientific journal called Appetite. The research areas for publication cover a wide range of topics, including "behavioural nutrition and the cultural, sensory, and physiological influences on choices and intakes of foods and drinks. It covers normal and disordered eating and drinking, dietary attitudes and practices and all aspects of the bases of human and animal behaviour toward food." Who knew scientists were interested in all of those things? Clearly, anything I can say on the topic is very limited!

There's also a book about food and eating called Appetite, by Nigel Slater. He reflects on our relationships with food and food preparation, and also seems to include some recipes. I never heard of this book before, but it sounds interesting. However, in the table of contents, there is no mention of "chemotherapy" and appetite. So, that's no help!

So what can those of us on chemotherapy do about our lack of appetite? Doctors can give us anti-nausea meds (and they do), and I guess there are even drugs to stimulate appetite (I heard a doctor prescribing some to the person next to me in the chemo room). But I'd like to stimulate my appetite without drugs, and make sure that I am getting the nutrition I need to support my body's functioning and fight against this cancer that endangers my existence.

One book that specifically focuses on what those with cancer can do about loss of appetite is Return to Wholeness by David Simon. He's an M.D. with an ayurvedic perspective, so he talks about a drink to stimulate appetite (equal parts gingerroot juice, lemon juice, honey, and water with a pinch of black pepper; how do I squeeze juice from gingerroot?), and some natural ayurvedic shakes and soups. I remember reading this section of the book last fall, when my appetite was normal, and thinking I probably wouldn't need his suggestions. Was I ever wrong! Now that I've rediscovered it, I need to try some of his ideas.

I began this post this morning, and now I'm ready to put it on the blog. Over these hours, I've experimented with trying to eat more. I woke up thinking about homemade blueberry muffins, so I made them. They were good, but didn't taste quite right. Then I tried a half-banana, a drinkable yogurt, and some reheated mashed potatoes. (I decided to return to the "white food" approach to diet!) So far, so good. Thanks for reading my ramblings on this topic!

Having Cancer: A Full-time Job

Having a cancer diagnosis is a full-time job, I've decided. I shared that observation with a nurse friend a few weeks ago, and she said that she tells her advanced nursing students exactly that about having a chronic illness. And here I thought I'd had a new insight!

Given that I'm not yet having any regular treatment for the gallbladder cancer, you might ask what takes so much time about having cancer. First, it occupies all of those empty spaces in my mind that I would just as soon remain vacant and quiet. Many nights, I try to sleep, and I start thinking about cancer; I wake up during the night, and I think about cancer; walking, sitting, waiting, any time my mind is not actively engaged, it turns to thoughts of cancer. When I have moments or even stretches of time when I forget that I have cancer, I am delighted.

Aside from thinking about it, I gather information everywhere I can. On my side table, I have a pile of books from the library about cancer and healing: Bill Moyers - Healing and the Mind, What to Eat if you have Cancer, Cancer Clinical Trials. and One Renegade Cell. I have only browsed the books, but there they sit, perhaps holding some valuable gem of information. My friend Alice gave me Return to Wholeness by Dr. David Simon, medical director for the Chopra Center for Well Being, using Ayurvedic techniques, diet, nutrition, herbs and perspectives to assist in traditional cancer treatment. He has wonderfully practical suggestions like how to stimulate an appetite depressed by chemotherapy, and how to work cooperatively with medical personnel and the healing potential in our own bodies to maximize healing and success for treatment. While I have learned much from the first half of the book, the most memorable part for me, so far, is his description of a study that was done by Dr. Robert Ader on how our minds can affect our immune system.

In the study, rats were given sweetened water and then injected with a chemical that would induce nausea and vomiting, and temporarily suppress their immune systems. After the rats had recovered, they were again given sweet water and an injection, this time with saline. Because of their conditioning, they were nauseated from the sweet water and saline injection, but they also showed suppression of their immune system even though no drug was given to cause that affect. Simon comments that "Their immune cells had 'learned' that sweetened water caused them to be suppressed." I haven't started chemo, but it seems that there is a powerful cautionary tale here for the future.

In addition to reading books, I check out the discussion boards to see what's up, read about the chemo drugs on the chemocare.com site, check out the latest research in PubMed, and read the 17-page protocol for the clinical trial proposed to me once again. (This link will take you to the National Institutes of Health site for the particular clinical trial I'm considering. The home site of clinicaltrials.gov can introduce you to other clinical trials around the country.) The "PubMed" site is a government website providing abstracts of medical research around the world. I created an "account" at no charge, receive email notices when a new batch of article abstracts on gallbladder cancer is listed, and can see what's being currently published. Knowing very little about medicine, some of the abstracts are full of medical terminology I don't understand, but the more I read, the more the abstracts begin to make some sense. Some of the recent research is quite encouraging, as new drug combinations, or drugs administered differently have a notable impact on survival of patients with gallbladder cancer.

However, a cautionary note for me. I went to the Bloch Cancer website, full of practical and encouraging information, but when I checked the list of patients who were five years or more post diagnosis, and had a rare cancer, there were none listed with gallbladder or even bile duct cancer.

So, lots to read, lots to think about, lots to learn. A full-time job indeed.

What Does it Mean When your Most Pampered Organ Develops Cancer?

So, here's the weird thing about my gallbladder cancer. Of all the organs in my body, except perhaps my skin, it's the one I've spent the last twenty years taking extra specially good care of. Before I describe my pampering, I wans to answer a question some of you may be asking (as one friend did after hearing of my diagnosis): Where is the gall bladder and what does it do? The National Institutes of Health website defines it this way: "The gallbladder is a pear-shaped organ that lies just under the liver in the upper abdomen. The gallbladder stores bile, a fluid made by the liver to digest fat. When food is being broken down in the stomach and intestines, bile is released from the gallbladder through a tube called the common bile duct, which connects the gallbladder and live to the first part of the small intestine." That's the medical explanation. How did I come to pamper my gall bladder?

Growing up, I heard about the gallbladder from an early age, because my mother had hers surgically removed when I was just a toddler. There were foods she didn't cook for us, mostly pork and other fatty foods, because her doctors had told her to avoid pork after her surgery. So, I had heard about gallbladders early on, even if I didn't understand what they did. In my thirties, I had my first "gallbladder attack" (my words, I didn't see a doctor then) when I was awakened in the middle of the night by pain going up my back. A heating pad and sitting up finally eased the pain so that I could go back to sleep. (I attributed the event to trying out a new Chinese restaurant in town, and I didn't return to that particular greasy spoon.) After, on the suggestion of friend, I began drinking one-half a lemon squeezed into warm water each morning. It made intuitive sense to me that it might break down grease in my liver or gall bladder, it tasted good to me, and it was cheaper than a glass of orange juice. I continued to drink the lemon water almost every morning until my cancer diagnosis last May.

How else did I pamper my gallbladder? I only ate peanuts or peanut butter in the morning or mid-day, never at night, and the same with fried foods, which I ate only occasionally anyway. Apple cider gave me indigestion, so I avoided it even though I like it. My doctor had told me that "cruciferous vegetables" (broccoli and cauliflower) or apples might give me trouble, but they didn't. I ate low fat meats, enzymes to help my food digest, lots of fresh fruits and vegetables, and avoided any food I thought would make my gallbladder flare up.

Only twice more, in the last year and a half, did I have painful indigestion. I thought I was taking really good care of my gallbladder, and helping to prevent stones. Gallbladder cancer was nothing I'd ever heard of.

Oh, and I should mention that my father had his gallbladder removed about twenty years ago, in his 60s. I've known for a while that in my family, gallbladders didn't do well, so I intensified my efforts to take care of mine.

I don't have an answer to the question that begins this blog, but I do know that it feels really, really strange to have the most pampered organ develop cancer. If I thought I was eating well before this diagnosis, and I developed cancer, then what do I eat now? If I thought that drinking the lemon water was being good to my gallbladder, then do I now think that I was too good, and perhaps would have had my stone-filled gallbladder removed a decade ago? I know from talking with others with cancer that it's natural to second guess our behavior before diagnosis and wonder if we could have done something different so that the cancer would not develop.

But, the purpose of my question is also asking whether or not there is anything I can do now to help keep the tumor from growing, the cancer from spreading. Should I eat organic food? Should I keep drinking lemon water, or stop? What would be a healthy diet? Does what I eat matter now? Reading some discussion boards, and responses to various blogs, I see that lots of people have opinions (tumors feed on sugars, cancer patients need to eat organic, everyone should try alternative therapies, see a nutritionist, etc.). I'm not sure whether or not my diet before the cancer developed had any impact on the development of the cancer, and I'm not sure whether or not what I eat now matters. Lots, and lots of questions. For now, and possibly never, no real answers.