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Who Cares?

OjaiCARES. Susan Kapadia and Renee Mandala on the creation of the Ojai Valley’s only non-profit community-based cancer support organization.

By Ryan A. Smith

Photo by Marisa Breyer-Smith

A song of healing brought Susan Kapadia (l.) and Renee Mandala (r.) together to support other cancer patients in the Ojai Valley.

Why did you start OjaiCARES?
Susan Kapadia:
I was diagnosed with breast cancer in 2009. That realization, that shock and awe, needed to be addressed, and it was more than just my family could handle. My health treatment team was in Santa Barbara.
Renee Mandala: Because there’s no cancer treatment in Ojai. SK: That’s right. I looked around Ojai and there was nothing here. It’s very lonely.

No support groups, no treatment centers?
SK:
There was a single support group for breast cancer that met once a month, and it didn’t meet all my needs. I needed somebody every day, somebody I could call when I was in a panic in the middle of the night.

So how did your struggle transform into OjaiCARES?
SK:
To be very honest, I struggled for two years. Very depressed. I owned a restaurant here in Ojai and was diagnosed five months after I opened it. World Flavor Café on Signal Street. My oncologist recommended that I close the restaurant during my treatment period, because 16-hour days and cancer treatment were not working for me. I was getting very ill. I was devastated. So I sold the restaurant and spent a good portion of those two years in a pity party. One day, I went to my oncologist and told the nurse there, ‘Tammy, I’m having a very difficult time entering the world again. I really don’t know how to remake myself. I’m lost.’ She grabbed my hand and led me across the parking lot to the Breast Cancer Resource Center of Santa Barbara. As soon as I entered, they met me with hugs, and I knew I’d met my people. They gave me a home and gave me a job.

A job?
SK:
I became a volunteer for a year and was quite good at my job. I honed my skills there, went back to school at UCLA, got my patient advocate certificate. I felt competent to open a center based on their model.

How did you two first get together?
RM:
I was diagnosed with ovarian cancer in fall 2012. Mutual friends suggested that I meet Susan. Fun little story: I was about to head into a second surgery and asked friends to record uplifting messages for me to listen to. They collected all these recordings of people, and on there was Susan, who I had yet to meet, singing a prayerful song for me with her lovely, angelic voice.
SK: It was a Hebrew song of healing, and I sang it to her because it’s one of my favorites.
RM: I soon started to access her as sort of a one-woman startup of a cancer support center. I needed a lot of support. My family was out of town, and I had a lot of worries, a lot of questions. Then I started to recover, and in 2014 Susan asked if I wanted to come on part-time. I have a background in medical social work and ran a lot of support groups in my life, but I was fairly new to running cancer groups.

What does OjaiCARES offer?
RM:
We have four different support groups each month. Two are general cancer support. One is called “Cancer as a Turning Point,” based on a book of the same title. People who attend are very interested in learning how cancer invites us to live more healthy, authentic, aligned lives, letting go of things that aren’t working in our lives, taking on things bringing us more joy. The other is a drop-in group where people can just chat with each other. Not a facilitated group, just chat time. Our groups are popular, but more so are our integrative therapy programs. There is oncology massage, Reiki, and reflexology. Some don’t want to come in and talk, but they sure want a massage. That’s a very popular program run fully by our dedicated volunteer core.
SK: They have all been trained in oncology massage, every single one of them.
RM: And we have guided imagery called “Turning Up the Comfort,” which is to help people deal with discomfort. Then we have “Finding Our Center,” which helps people get centered when there’s so much uncertainty. We’re adding a new program called “Releasing Through Relaxation,” which helps them find calm. We also have a relationship with an offsite yoga center, Sacred Space Studio with Ingrid, and she sees our clients for free. And we recently got a grant for an art program, to be launched in January. We are also looking toward a “Writing for Wellness” program. Certainly, our lending library is helpful too, the wig and scarf boutique. Primarily, though, we help with patient navigation. Newly diagnosed people have questions.
SK: Sometimes there are insurance billing questions, things that Renee and I have dealt with a lot. When you see doctors for six months on a weekly basis, there are bound to be mistakes in your billing.

You mentioned everything is free. How do you manage that?
RM: We keep our budget very low. Our community has seen the need, and they’ve helped with private and community donations. We are also getting better at writing grants, which is one of Susan’s focuses. Finally, it’s our volunteers; we are primarily volunteer-driven, and we’re blessed to have a very dedicated core.

What is unique about OjaiCARES?
RM:
There is no cancer treatment in Ojai. There are no other cancer support services here. We are not associated with the hospital. We don’t get funded by any hospital budget the way some large cancer organizations do outside of Ojai.
SK: We are absolutely filling a gap. When you are feeling sick and tired, the last thing you want to do is drive 35 miles for support. So where does that leave you? Alone with your thoughts, instead of in a community.

How has the response been from Ojai residents?
RM:
One female donor called and said, ‘I heard about your organization, and I want to make a large donation. Just knowing you are there helps me sleep better at night.’

How did the community affect your own cancer journeys?
SK:
I had to go through cancer in a very public way because of the restaurant. People often came to see how I was doing, and I found that very… It really filled my heart. And I know that’s a very Ojai thing. So they would come in with puppy dog eyes, like, ‘Oh, how are you doing today?’ It was not exactly what I needed, but of course you take in the love—this is what I needed.
RM: I have no family on the West Coast, and I considered going back and living with my mom to do treatment. I had a little bit of savings, but certainly couldn’t pay my rent and be out of work. Interestingly, my car was totaled in the middle of the night on a dead end, sleepy street in Ojai, and that’s when things started to come together for me here. A friend asked me to live with her while I did my treatment. Some friends got together and found a cheap mechanic to get my car fixed. Someone else loaned me a car. Someone drove me to chemotherapy each week. Some ladies dropped off vegetables so I could do my juicing. Other people dropped off bones so I could do my bone broth. Susan showed up in the chemotherapy room with some wonderful soup for me. The Mardi Gras folks in Ojai chose to donate the proceeds from their event to me that year. So many things in Ojai came together. Other friends did an online fundraiser for me.

Considering OjaiCARES, how do you see success?
SK:
I already feel successful. I took that leap of faith—that if you build it, they will come. I felt this place would be a success even if only one person came. I honestly believe that.

I guess that makes it easy to come to work.
SK:
Very. People say to me, ‘How do you deal with this issue all day long?’ And I say, ‘It’s a joy to come to work.’ You have no idea the pleasure I get from seeing a person leave with this new sense of, ‘I can do this, I’m going to be able to do this.’ They have a road map when they leave. We are a well of compassion for the challenges they are facing. So I feel successful every single day.

What are your goals for the coming year?
SK: Exhale! (Laughs) The goal is that everybody in this valley knows we exist.
RM: And that no one walks alone with cancer in Ojai.

For more information about OjaiCARES, visit ojaicares.org or call 805.646.6433

Among the many practical offerings at OjaiCARES, stylish head coverings and wigs, as well as a long list of additional referrals and resources. Drop into 960 East Ojai Ave., Suite 105.

11-01-2015

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