I'm doing much better so far with this chemo cycle, and felt much better yesterday following the oxaliplatin infusion yesterday, and beginning the two weeks of Xeloda tablets.
The chemo nurse, Linda, sensed my anxiety when I arrived, and we talked about what happened last time, my worries that I would leave again feeling so awful I could barely walk, and my concerns about the lingering side effects. Dr. J, the oncologist, called from Wyoming, where he was lecturing to medical students, and updated me on the details of the changes in my chemo regimen. He ordered a calcium/magnesium infusion before and after the oxaliplatin, because it seems to offset the impact of the drug on nerves (neuropathy), and that did seem to make a big difference yesterday. He also reduced the oxaliplatin dose by 20%, and the Xeloda dose by 33%, so I'll be having a bit less of both chemos through this cycle.
When I left, my legs weren't hurting, as they were last time, and I didn't have numbness in the back of my throat. And today I don't have as strong a sense of my body just being completely out of whack as I did. I did still have trouble with pain in my arm when the infusion was about 3/4 complete, so I asked Linda to stop it. So, we stopped using the one arm and went to the other, and went to a larger vein in my arm, near my elbow for the end of the infusion. Linda was upset because she thinks that the oxaliplatin is just too tough for arm veins to tolerate, and that they should establish a policy that everyone receiving the drug has a port.
Anyway, after going to a second vein yesterday and having everything slowed down as a result, I'm ready for a port. Linda must have ordered it right away, because I got a phone call from the "line coordinator" soon after I got home, and I have an appointment to have it inserted on Monday, April 2, with my appointment beginning at 6:00 in the morning (Yeow!). Since I don't want to do another infusion without a port, I'm glad we have a plan. The port is inserted surgically in the chest below the collarbone, and provides easy access for the chemo infusion. And because this is a larger vein, the soreness with arm infusions just isn't an issue.
I also had a good conversation with Linda about my problems eating and my lack of appetite. After talking with her, I feel as if my problems have been normalized. Lots of people with various forms of chemo have lack of appetite, food tasting funny, decreasing appetite as the day progresses, and other odd things about eating, it seems. We talked about drinking as much as I can so as not to get dehydrated, about eating frequently, expecting to be able to eat less at a time than I used to, and just dealing with what is but eating as much as I can. I've lost 15 pounds or so in the last two months (some of it due to the stomach virus), and Linda said I need to stop losing weight and regain at least some of it. So, I feel normalized in my experience and challenged to keep getting more nutrition into me. She also gave me a book with recipes especially attractive to and useful for patients on chemo. It has lots of soup recipes, which I'll have to try when I have energy. I've been realizing that liquid food like soup tastes especially good to me.
On the subject of losing weight, I had something very funny happen to me while teaching on Thursday. I was wearing a pair of my favorite stretch corduroy pants, which are very comfortable, and I'd walked from the train station to my office without incident. However, when I was teaching, talking, and raising my arms to write a lot on the board, I began to realize that my pants were beginning to fall down. I slipped behind the big media center and hiked them up, and then found I had to do that repeatedly. Fortunately, they didn't end up around my ankles, which would have been beyond embarrassing, but it was a struggle to focus on my lecture, answer student questions, and keep up my too-loose pants!
So, that's my medical update and my medical state for today. It's a relief to feel more normal than I did last time.
This week was hard, with a need to focus intensely on work before I felt rested from traveling, and with my anticipatory anxiety about yesterday's chemo. So, I'm glad to be on the other side of all of that, able to nap today and tomorrow, and ready to get back into the rhythm of our daily routines. My continuing thanks to all of you who read this and follow my journey, and who post your words of love, support, and humor!
Showing posts with label appetite. Show all posts
Showing posts with label appetite. Show all posts
Saturday, March 24, 2007
Saturday, March 03, 2007
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!
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!
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