Tag Archives: caregivers

camp kesem, creating magic for kids coping with cancer

February 10, 2012 By in caregivers, resources Tags: , , Leave a comment
camp kesem, creating magic for kids coping with cancer

I love finding new resources for patients with cancer — or for their families and caregivers. This week, I discovered a new one, and I love the concept of it.

Camp Kesem is a college-student run, week-long summer camp for children with a parent who has – or had – cancer. Kesem means “magic” in Hebrew, and Camp Kesem’s goal is to bring magic into the lives of kids who are coping with the effects of cancer in their family. The camp organizers have expanded the definition to suit their goals and purposes, and I love how they have modified it:

Kesem (n.): magic; the ability to change a life; an agent of growth; the unique power that transforms kids into Camp Kesem Campers.

The first week-long sleepover camp was held in 2001 at Stanford. From that initial camp at that one university, Camp Kesem now has 23 camps across the country, affiliated with a variety of colleges and universities.

The beauty of this camp is that it is completely free for campers, kids ages 6 to 16. Cancer puts such financial and emotional strain on families, so the goal of the organization is to not add to that stress, but instead allow kids to be kids, for at least a week of the summer.

University of Florida has a local chapter of Camp Kesem, and this year, their 5th annual summer camp is from August 5th through 10th.

I asked Lauren Light, the co-chair for the UF Chapter, what got her interested working with the camp, something she’s done for the past four years.

My mom was diagnosed with breast cancer when I was 16, and while it was caught early and she has been in remission, it was still a scary concept. The idea of the camp really appealed to me- a place for kids where they can connect with others and just have an incredibly fun week, while their parents can relax and take care of themselves without worry. I love watching it grow and become bigger and better each year, serving more and more deserving families. The things I enjoy most are when the kids don’t want to leave, their parents tell us how much they talk about us after camp, and when our campers say things like “Camp Kesem is better than Christmas!”.

If you’d like to volunteer time or donate to Camp Kesem, either to support the national organization or an individual camp near you, you’ll be making a real impact on these children’s lives. And if you live in north Florida and know a child with a parent who is dealing with cancer, pass on the local camp information to them.

photo courtesy of Lauren Light & Camp Kesem at UF

your voices: kathy and breast cancer

December 8, 2011 By in caregivers, chemotherapy, during treatment, taste changes Tags: , , , , 2 Comments

Today I’m thrilled that Kathy Gori is sharing her story with us. Kathy is a breast cancer survivor who has a great perspective on eating well during cancer therapy and beyond.

Kathy, photo by Alan Berger

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Tell us a little about your history with cancer.

I was diagnosed with breast cancer in 1990, while in my 30′s. I found the lump while doing a monthly self exam. I had gotten a clean mammogram just 3 months before as part of a full physical well baby program (we were trying to get pregnant) . The tumor was small but practically on the chest wall. My doctor was surprised I was even able to find it. Since I was a vegetarian, a runner, and did not smoke or drink, and given my age, no one thought the lump could possibly be malignant. But I had a biopsy and it was.

The cancer was non-hormonal dependent which is common in younger women and so considered aggressive. I had a mastectomy, and chemotherapy (at the time they did not do radiation if one had a mastectomy, though now they do). The cellular matter in my tumor was aneuploid and I was given a poor prognosis.

What type of changes did you notice with your appetite for food or your tastes for food during your treatment? How did you learn to overcome these changes?

When I was first diagnosed, eating was the last thing on my mind. I didn’t have much of an appetite, mainly because I was so scared. I was doing conventional western medicine and decided to augment my treatment by following a strict macrobiotic diet recommended for breast cancer patients.

I like Japanese food but the very strict diet was boring the pants off me. Since I was not allowed eggplant, potatoes, or tomatoes (in macrobiotic terms they were considered deadly nightshades and so a big no no), which were some of my favorite foods, and since the diet was so restricted, I wasn’t eating much. I started losing a lot of weight fast. This was not good. There was talk of putting in a port to get more nutrition into me. My doctors were concerned since I was skinny to begin with and I needed to keep up my strength. My internist suggested instead of macrobiotics I might try a more Ayurvedic diet (Indian food) where I could eat the foods I liked. My sister in law is an Indologist/archeologist (expert on 3rd century BC Indian art) and has lived and worked in India. She’s also a great Indian cook and she got me started with cooking my own Indian food. I quickly began preparing my own organic healthy Indian vegetarian dishes. My appetite was stimulated and I happily ate my way through treatment.

Of course there were chemo days when I was nauseous and unable to cook and so my husband would take me out to a neighborhood vegetarian/vegan restaurant if I felt like it (sometimes going out was good for me) or he’d bring food back for me. I also smoked marijuana — which I’d never done before (my oncologist and internist both recommended it) — to stimulate appetite. It worked.

Do you have any tips for enjoying food despite cancer for other people going through a similar situation?

People told me when starting chemo to suck on hard candy so that I wouldn’t taste the medicine. I bought tons of butterscotch hard candies to the hospital with me. The result was, 21 years later I now hate butterscotch. It ruined butterscotch for me, so I always tell people if you’re bringing something to chemo to take the taste away, bring something you’re not nuts about as you may never want to eat it again after this is all over. Also I always say eat what you feel like eating..but eat! For my first round of chemo I had an insane craving for peanut butter and jelly sandwiches with big glasses of pink lemonade. Alan made all of these for me non-stop. I couldn’t get enough. Was it organic? Hell no. Was it healthy? What do you think? But I wanted it, I could and would eat it..so I did. It made me happy!

In short my advice is to eat what makes you happy. I do a lot of cooking for friends having cancer treatment and I always ask them first, what do you want to eat? What do you feel like eating? If there was ever a time to eat dessert first this it it.

Do you have any tips for caregivers of cancer patients going through the cancer experience?

To patients and caregivers I always say: be patient. This isn’t easy for anyone. I found that it was good sometimes to do things for my husband while I was having treatment so that the caring wasn’t all going one way. It also made me feel better and much more “normal” to do the things I always did.

It’s always important to remember that there’s life after this illness and when it’s over you want those who helped you to still be speaking to you.

Do you have a recipe to share you were fond of during or after your treatment?

One of my favorite treatment, post-treatment, and right-up-to-now dishes is Indian style spinach with corn. I make this at home all the time. It’s nourishing, tasty, and on the menu when I do cooking for other cancer patients. It’s easy to eat and everyone seems to like it.

photo by Alan Berger

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Kathy Gori has been cooking Indian food for 20 years. A screenwriter by trade, she works at home, so trading a hot keyboard for a hot stove was just a matter of a few steps. Her obsession with Indian cooking began when her sister-in-law, Elizabeth, an Indologist who’d lived and worked in India, introduced her to the intricacies of the Indian kitchen. Thousands of hours and hundreds of dishes later, Kathy makes her own chutneys, grinds her own spices and enjoys exploring the various cuisines of the sub-continent. She has cooked for some of the Dalai Lama’s monks, the Director of the Delhi Museum and President Clinton’s California campaign staff. She is always learning and loves to share her knowledge and love of Indian cooking with others.

In addition to her writing and cooking, she was the voice of Rosemary the Telephone Operator in the series Hong Kong Phooey. She has voiced many films and commercials, winning a Clio Award, and she ever “dated” Don Draper. Kathy and her husband/writing partner, Alan Berger, live with their Siberian Husky, Patsy, in Sonoma, and most recently worked on the screenplay for Chaos Theory starring Ryan Reynolds.

caring for the caregiver: a gift of food

October 25, 2011 By in caregivers, during treatment Tags: , , 2 Comments

During the cancer diagnosis and treatment, the focus is very much on the patient, the one going through the work-up, the biopsies, the chemotherapy or radiation, the surgery, the side effects. But often, there is someone else who may be just as affected by the diagnosis and treatment — the caregiver.

It’s rare that I see a new patient, someone with a new diagnosis of cancer, who comes alone to the first visit with me. There is usually a very concerned wife or husband – or a best friend, a child, a sister or a brother, a church member – sitting right beside his or her loved one, holding their hand or patting their knee, ready with a notebook and pen to write down the important details of the cancer that I’m about to share. And, without fail, that same caregiver is at almost all the visits to come, all the appointments for chemotherapy and beyond.

And, while it’s never intentional, it is easy for the caregiver to be forgotten along the way. The attention is necessarily – and rightly so – focused on the person who is dealing with cancer, but the caregiver is generally carrying quite a heavy load. The caregivers I’ve encountered are often silent, going through the experience without complaining. It seems intuitive, but medical literature tells us that caregivers are more likely to become ill themselves, have higher rates of depression and insomnia, have more emotional stress and financial burden.

It’s not uncommon — in fact, I’d say it’s VERY common — for caregivers to neglect themselves while caring for their loved one. They may stop exercising. They may not get enough sleep. And often, they don’t focus on eating healthy — or eating at all. It’s just not a priority. Just ask my mother – she’s been known to eat potato chips for dinner while caregiving for my father and my grandmother recently.

If you’d like to help out a friend with cancer, I’d encourage you to think about doing something special for his or her caregiver as well. A simple gift of a homemade meal will not only provide a nourishing alternative to fast food or a peanut butter sandwich, but it will also lift up their spirits and nourish the soul.

I’ve listed a few recipe ideas below for meals that should be easy to make ahead and are freezer-friendly. Just remember to package up the meal in disposable pans to minimize any clean-up. Your task is to make the caregiver’s life easier, not make her spend an hour washing dishes afterward. Now, go forth and cook!

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