No one told Naomi Ziva how a person diagnosed with stage 4 colon cancer was supposed to act. Although she had a large support system of family and friends, Ziva had no role model, no one close to her who’d battled cancer. Now that she’s figured it out for herself, it doesn’t look anything like the typical cancer experience. Ziva’s battle has costumes and flowers, music and laughter, grit and openness.
“When I started being public, it was because I was tired of telling the story over and over to one person at a time but still felt it was important to tell my story,” says Ziva, an independent artist at Dragonfly the Salon in Atlanta. “I wanted everyone to know that even when we’re fighting cancer, we’re still people and that ‘I can’t even look at her’ doesn’t have to be the reaction.” Ziva turned it around so that looking at her is pretty unavoidable. Already documenting her cancer journey through blogging and photography, she decided to make an even more public statement.
“By my third chemo appointment, I knew I needed to make it less serious,” Ziva, 44, recalls of that time more than a year ago. “A friend was coming with me, and I said, ‘Let’s dress up as super-heroes!’” That’s exactly what they did, and it was a big hit with the medical staff and chemotherapy patients alike. Since then she has dressed up in a different costume at each appointment, which are two weeks apart. She’s getting requests from friends who want to accompany her, so sometimes she shows up with a small group. They’ve dressed as Madonna, the Spice Girls, Randy Savage and Hulk Hogan, Napoleon Dynamite and more. “We never run out of ideas!” Ziva says. “Because I’m a hairdresser, I have plenty of wigs, and we go thrifting for the rest of the costumes. I walk into chemo with music playing, handing out roses, laughing—it kind of makes other people forget for a minute that they’re sick. It makes me forget for a minute, too! I miss the creativity of hairstyling and connecting with people, so this fills that void.”
This whimsical approach has brought her lots of press, including a piece on CNN, and back at the salon the support has been heavy and constant. “When I was diagnosed, my salon held a fundraiser for me as a show of support,” Ziva reports. “They were really amazing. Many of my friends who come with me to chemo are also clients—I’m not sure whether they were friends first or clients first! I’m doing hair about once a week just to keep my hands in it, because I miss it so much. The other stylists who are taking care of my clients tell me that my clients are waiting for me. They’re so supportive.”
One longtime friend, Rachael Hoffman, is vice president of marketing and brand development at Keune and among the friends Ziva has invited to share the “costume chemo” experience. Before she got sick, Ziva was attending some Keune events and building a relationship with the brand, according to Hoffman. Now that Ziva is getting back to doing a little hair, the brand is helping her cut into the mounting medical bills and related expenses by giving her Keune So Pure color and hair care products free of charge.
“Keune is all about family and supporting the community,” Hoffman explains. “It is natural for us to help support Naomi in her mission to get back behind the chair. It’s an ammonia-free line, so it’s a nice product for her to use. I’m inspired by Naomi’s courage and the way she injects her creativity to empower other people at the cancer treatment center. People see that even when you’re facing this, you can spread smiles and positive energy.”
Ziva appreciates this level of support. “Keune has been helping me with my products,” she confirms. “The color line is beautiful with no ammonia, so I can breathe when I use it.”
With limitations on her in-salon schedule, Ziva is expressing her creativity through a “beauty of cancer” series of photographs showing paintings people are doing on Ziva’s shaved head. It took nearly a year for the chemotherapy to cause her hair to fall out, and she’s been shaving her hair since then. “I have some fuzzy hair, but I can tell it’s patchy or doesn’t look right,” Ziva says.
What has become a head-shaving ritual is often one of the most challenging aspects of treatment for chemotherapy patients, but Ziva says that being a hairdresser made the bald issue easier. “When I was 25, I was bored, so I took my neck trimmers and shaved my head,” she reports. I think that’s why when I shaved my head this time, it wasn’t as traumatic for me as it might be for other people. Through the years my hair has been everything from yellow to black to pink—every color under the sun. Still, I asked my staff to help me decide when it was time for me to shave my head, because the stress was more in deciding than in actually shaving. I have stocked up on hats but wear them only on occasion. Being in the beauty industry, I have connections that are useful now—I’m getting microblading done on my eyebrows.”
With her colon cancer metastasized to her liver and lung, Ziva is told by her doctors that chemotherapy will continue indefinitely. She stays with her parents during chemo weeks and credits her attitude not only to the support she’s received but also to a therapist she saw earlier in this journey. She was having trouble thinking about what she might have done that triggered her illness.
Ziva remembers, “The therapist took my hand and said, ‘You did nothing; this happened to you.’ Understanding that was so important for me. After that I could create positive energy in dealing with it. Wasting time and energy on the ‘what ifs’ is not going to do me any good.” Instead, she spends time writing out her feelings. On a recent blog, she offered people some do-and-don’t guidelines in handling a friend with cancer. The advice below is in Ziva’s own words.
- Tell me how difficult it is for you. However difficult it is for you, it’s a lot worse for me. When you go on with this type of talk, it can be stressful. This is not something that I am good at. Not for myself anyway. Maybe for those that I'm comforting. This can be very taxing to do repeatedly. I appreciate that you have feelings about the subject, but I’m not sure how I can make this better for you without making it hard on me. If you feel this way, maybe offer me a hug or let me know if I need anything, you’re happy to help. I have a tough time trying to make you feel better about my illness.
- Ask me if I’m OK. We both know I’m not. I have Stage IV colon cancer and have chemo every two weeks. I have good moments. If I look like I’m doing ok, then I am at the moment. If I’m not, I have the wherewithal to remove myself, or ask for help. The incessant questioning only makes me feel distanced from the normal life I so long for and only touch upon on occasion. A prolonged “How ARE you?” with an overly concerned stare falls in the same category.
- Tell me about every person that you or anyone you know, that has died from cancer. This is not a good topic to engage in with me or anyone else with a cancer diagnosis. I don’t know how to respond to it and it really makes me feel like you look at me like I’m a walking corpse.
- Tell me about every treatment that every other person with cancer has gone through. Every cancer is different and is treated as such. It’s based on type of cancer, what stage it’s in, genetic testing, what the individual is capable of handling, and more. I have been going through this since June 15, 2016. I have and am continuing to explore every option. If you think a certain treatment is worth me looking into, feel free to send me a link or article. I’d love to read up on it.
- Look at me with pity. I can see it in your eyes. It’s one of my biggest pet peeves. It’s a sure fire way to create distance between you and me.
- If I’m out trying to have a good time, don't go into a long diatribe about how I should be handling this. For example—my diet, alternative treatment, the drugs I need. I’m trying to escape it. Even if just for a night. Tell me you’d like to talk about it with me another time. I’ll be happy to discuss it with you when I’m not at a party, at a concert, or being social.
- Smile at me. I promise I’ll smile back. I love that.
- Joke around—it’s ok. I like to laugh. I’m sarcastic and I love a good sense of humor.
- Hug me. Not excessively or dramatically, but like you would anyone else. I remember what it’s like to see my people and say hello or goodbye with a hug. I promise you can’t catch what I’ve got.
- Give a kind word about it. Just don’t go on and on. My cancer is not about you. I will shut down and be thinking about how to get away from you.
“I realized as I continued to write, that people were actually listening, that they wanted to know more about cancer,” Ziva writes on that same blog post, where she is candid about her difficulties and suffering. “About what we go through and how their actions affect those of us dealing with it. I feel at this point that it’s my duty to let you know things about cancer that you wouldn’t normally know. Things that all of us have been in the dark about. Those of us who didn’t know enough about how bad that this disease really is and how widespread it is, are open to the knowledge.”