Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.When you're in treatment for cancer and huge parts of your life are entirely out of your control, one of the few things you can control is diet. In fact, it's one of the single most important parts of your Life In Treatment--powering the engine that will get you through. Come to think of it, that applies to almost every serious illness. If you want to get better, if you want to survive, you have to eat. There are times, though, that eating becomes the challenge. That's what I want to discuss tonight, how to navigate that minefield: When you need calories to survive but almost everything you see makes you throw up, how do you manage? How, and what, do you eat? Do you have any go-to recipes or strategies for keeping up the calories?
Only people who have no idea what they're talking about see the kinds of therapies that save life--whether for cancer or any other serious chronic disease--as an chance to lose weight. For the rest of us, we who have already earned our chemo badges--we know better. You can't fight the disease and put your body back on a healing path without calories, and starvation is a lousy strategy for weight loss.
On the other hand, treatment makes you so sick that eating is almost the last thing you want to do. Sometimes eating comes down to an intellectual exercise and survival strategy. Sometimes it stays that way. Even now, even today, when I'm alone I'm more likely to ignore hunger than I am to get up and eat something. Every day I have to look at the clock and remind myself to eat. That's happened because of my chemo experience, and it's what inspired me to write this diary. I hope, when it's all done and everyone's chipped in, we can make something good of our common experience.
I don't remember much about eating through my first rounds of chemo, eighteen years ago. Those first courses were cytoxin and adriamyicine, and I remember that everything I ate tasted like burnt metal. I was hyper-nauseated and had a hard time eating. Cold milk seemed to help. It was one of the few things I could keep down, most of the time.
Chemo during my first recurrence really stands out. I hyper-nauseated again. For a whole summer of taxol and cytoxin, leading up to a stem-cell transplant in October, I literally could not eat. The breast cancer had recurred in my bones, principally my back and ribs, and been misdiagnosed from January to June, when I finally collapsed. Because of the damage (four crushed vertebrae that took away three inches of height and more rib fractures than could be counted) and continuing bone fragility, I came home to a hospital bed. A wheel chair. A walker. And a scared five year old.
We pretended the bed was a space shuttle. The wheel chair was for space walks. I don't know what happened to the walker, but it was out of the picture early on. I could fake almost all of it, but I couldn't fake the nausea. I couldn't eat. Literally. And I didn't, not between June and October, when I entered the Adult Bone Marrow Transplant Unit at the University of Virginia, for a month of high dose chemo and stem cell rescue.
Yes, I grew weaker, much weaker. Didn't matter. My body simply would not accept food. Doctors prescribed "replacement nutrition," the grandparent of today's Boost or Ensure, stuff that tasted horrific even to someone who wasn't throwing up on a regular schedule. So that was a no-starter. I had mouth sores--white spots that, when they fell off, left depressions and purple scars that faded over a few days. A prescribed concoction called Pink Magic was the answer for that--and it was about as effective as the Boost.
About the only thing I could get down were ice pops--not the good kind, the fruit juicy kind, but the cheap pure sugar water kind that come in cherry, orange and grape, the ones that you remember from childhood. The ones our parents bought because they could get a big box for next to nothing. They cooled the sores in my mouth and throat. And Flavor-Ice pops. I kept a box in the freezer. Through that summer, when I couldn't sleep I would open 2 or 3 and let them sit until they were mushy. The crushing of the ice crystals in my mouth felt good--I remember that soft quality more than I remember the taste.
So they weren't great, but they were calories. And they got me through.
After the stem cell transplant, the nausea was worse. Despite enough steriods to power WWE for a month, I couldn't eat anything at all.
Through all this, I was navigating a tense relationship with my mother. She had lung cancer after 40 years of smoking, and it recurred that same summer, so she had gone through radiation and had her own problems. A great many things were stirring, some of which I knew about and some I didn't until later, and none of which matters, except that I was angry with my mother, and she was uncomfortable with me.
And so I came home from UVA, really happy to be home, and really estranged from my parents. And really really unable to eat.
Then one evening, unannounced, my mother came to visit and, in that no-nonsense tone that only a mother can pull off, told me I was going to eat.
She had brought a small pyrex baking dish of Bread Pudding, warm from her oven and browned on the top with sugar caramelized from the broiler. Scooping a few spoonfuls into a bowl--a modest amount by average standards, but more food than I had been able to choke down in days--and drowning it with heavy cream, she put it on the table and told me to try it.
It actually smelled good. It smelled like something I could imagine eating. I took a bite, and then another, and then another. It stayed down. And I could taste it--it was the first thing that didn't taste metallic and burnt out, coppery, poisonous, in months.
That was the start of my slow road back to food. Even now, after almost 14 years, I have abiding....I would call them fundamental changes of habit involving food. I don't care much about it any more. I am, however, enthusiastic about bread pudding; I still make and eat it, and always remember the satisfied little smile my mother got when she knew she had gotten me to eat when nothing else would work.
This is the recipe. I don't know where Mom got it, so I can't give credit.
Old Fashioned Bread PuddingThat's my story, part of it anyway, and the Food that Brought Me Back.
1 package (4-serving size) Jello Vanilla Pudding Mix (not instant--you want the kind that you cook)
1/4 cup sugar
3 cups milk
1/4 cup raisins
2 Tbsp. grated lemon rind (optional)
1 Tbsp. butter
1/2 tsp. vanilla
6 slices (or more) cubed bread, dry.
1/4 tsp. cinnamon
1/8 tsp. nutmeg
Combine pudding mix and 2 Tbsp. sugar. Add 2 cups milk, blend well. Add raisins and lemon rind. Cook and stir over medium heat to a full boil.
Remove from heat, stir in butter and vanilla. Set aside.
In a medium bowl, pour remaining 1 cup milk over bread cubes to moisten. Stir into the pudding mix.
Pour the whole mess into a 1 quart baking dish. Combine remaining sugar and spices. Sprinkle over pudding.
Run under the broiler until the sugar/spice mix is browned and bubbly (around 4 minutes)
Serve warm. Extra good with heavy cream
That is the recipe as I received it. Here are my personal changes:
*I don't add the lemon rind usually, although it provides a nice flavor twist (good for when you're not queasy)
*I also use a half-cup or more raisins.
*The choice of bread is important. My best results have come from dried French bread--it holds up to the pudding better and provides a satisfying substantiality to the pudding.
I'm sharing it in the hope that you will respond with the recipes, the foods, and the eating strategies that got you or someone you love through treatment.
It doesn't make much sense to gather information like this without planning to use it. Here is what I have in mind: a compilation of recipes, coping strategies and good advice to share with people newly diagnosed. Maybe we can make it an e-book. It just seems to me that together we know so much that would make the difficult road we've traveled a little easier for the next group who has to make this trip. It's wasteful not to try.
What do you think?
PS: Look for Kate's great news! I don't want to step on her announcement, but keep an eye out--