Survivor Spectrum: Meet Kiku Collins

 
  The talented Kiku Collins playing trumpet in Palermo, Italy. Photo: Arturo Di Vita

The talented Kiku Collins playing trumpet in Palermo, Italy. Photo: Arturo Di Vita

We only grow when we push our boundaries.
— Kiku Collins

SO EXCITED to continue my "Survivor Spectrum" series! (As a young breast cancer survivor, I rarely saw anyone that looked like me in chemo rooms or support groups. Usually the only one without grey hair, I rarely see young survivors — especially survivors of color — represented within the cancer community, and I can't wait to share our inspiring stories here!)

Thank you so much to my incredible Asian creative/breast cancer survivor sister, Kiku Collins, for sharing her AMAZING story as my second guest!

Having played for Barack Obama(!), not to mention with Beyoncé, Jill Scott and Queen Latifah (to name a few), the incredibly talented trumpeter, Kiku Collins — who also plays flugelhorn, cornet, pocket trumpet, valve trombone AND acts! — is an unstoppable musical force! She’s performed on the Today Show, Oprah Winfrey, Late Night with Jimmy Fallon, at the White House for President Obama (twice), The Ellen DeGeneres Show, The Grammys (and many others), in addition to appearances at several international jazz festivals.

Diagnosed with invasive ductal carcinoma shortly after her wedding, Kiku is a permanent resident of #Cancerland and lives with lymphedema. (NOTE: I also had the incredible HONOR — and difficult task! — of having to follow this beauty on the runway in the AnaOno Intimates x #Cancerland New York Fashion Week show!)

Now back home from a Paris tour with Gloria Gaynor, Kiku talks about her life as a musician, being a fashion muse and how the show must go on...even in the midst of breast cancer. 

  Kiku on the AnaOno Intimates x   #Cancerland runway during New York Fashion Week. (That's me in the swimsuit behind her!) Photo: Arun Nevader/Getty Images

Kiku on the AnaOno Intimates x #Cancerland runway during New York Fashion Week. (That's me in the swimsuit behind her!) Photo: Arun Nevader/Getty Images

Thank you so much for speaking with us! First, where can we find you online?

I'm on Facebook (NinjaPrincessKikuCollins), Instagram (@Kiku333), Twitter (@KikuCollins) and at www.kikucollins.com.

What was your diagnosis and at what age? 

I was diagnosed with invasive ductal carcinoma in my left breast (three tumors, with calcification filling in the gaps between them) one month after my wedding, and, ironically, two months after my first gig with Gloria Gaynor.

What was your course of treatment?

I had a unilateral mastectomy with six lymph nodes removed, radiation for six weeks, reconstruction and Tamoxifen for 10 months.

  Kiku in her hospital gown, showing her "Ninja" tattoo. Photo: Kiku Collins

Kiku in her hospital gown, showing her "Ninja" tattoo. Photo: Kiku Collins

What was your (professional) life like before diagnosis?

I'm a musician who tours the globe and sometimes, I get to pop onto a TV show. Before that, I mainly recorded for television commercials and shows. I often work with musicians younger than I am, so I always work out and try to take care of myself to keep in shape mentally and physically.

How has your (professional) life changed AFTER cancer?

I didn't make my cancer public until about six months after diagnosis. (I got lucky and was able to lay low the first two months following my mastectomy.) Right before that surgery, I was playing in Brazil and filmed two television shows days before, and I ended up on television twice during my recovery — so it was fairly easy to hide the fact that I was actually recovering at home, with nasty drains hanging out of me.

My first comeback gig was less than two months afterward, but it was a fairly calm holiday party, so I was able to sit and play tunes. The hardest thing was getting my chops back. Actually, that was the second hardest...

The hardest was quieting the anxiety of going back onstage with my new screwed-up body, new pains, and changes with my tissue overall. Yes, the treatments affected my playing, as my hormones were drastically altered which affected my skin and muscle quality, including my lips and facial muscles. In fact, it's still very different.

I'm probably more sensitive to this stuff since I make my living from it all!  

  Kiku playing with President Barack Obama. Photo: Kiku Collins

Kiku playing with President Barack Obama. Photo: Kiku Collins

  Kiku with Gloria Gaynor (right), who she calls "family," and Stephanie, Gloria's right-hand woman, at the Grammys 2015. Photo: Kiku Collins

Kiku with Gloria Gaynor (right), who she calls "family," and Stephanie, Gloria's right-hand woman, at the Grammys 2015. Photo: Kiku Collins

  Kiku with Queen Bey(oncé)! Photo: Kiku Collins

Kiku with Queen Bey(oncé)! Photo: Kiku Collins

What's your best advice for someone who is newly diagnosed?

PANIC! (Just kidding.) Be grateful that people talk about this disease now. My mom had it through the 80's, and everything seemed to be a secret.

People tell you to not look online. Personally, it helped me. I looked for patients telling their personal stories, and inspiration through photos. I found a lot of strength in seeing actual scars, reconstructions, etc...even surgery gone wrong.

I am the kind of person who often wants to know every facet of what I'm about to dive into. And sometimes, I want to know nothing. That usually doesn't last long, though!

What breast cancer resources do you recommend?

The resources I have found the most help through is the community of patients. Social media is a wonderful avenue to connect with others. At first, I didn't know how involved I wanted to be. Part of me wanted to never tell people.

Now, I've done three fashion shows in mastectomy lingerie, countless photo shoots showing "Scarlett" (my reconstruction) and appeared on national television as a guest, talking about breast cancer advocacy. And the way they found me is by an appearance I made as a mystery musician!

What resources are missing that you would like to see?

I'd like to see education. Women are told that breast cancer is cute, even sexy. We are led to believe that you simply have your breasts removed, you get "free" implants, and you're the same as you were before.

You hear about people being "cancer-free," [but] not that metastatic cancer can develop years later. There is no cure. You don't hear that when you buy your pink ballpoint pens or cosmetics and socks with pink ribbons on them.

You also don't hear about men with breast cancer often. Personally, I know two male breast cancer patients. I probably know a lot more, but men don't often disclose this information. And, how many men do examinations? One of my friends with (male) breast cancer found out as a result of cosmetic surgery. I'm positive he would never have known otherwise.

Who inspires you?

People who are willing to stand on the edge of their comfort zone on a regular basis. We only grow when we push our boundaries. My daughter is a constant inspiration to me, even when she acts like the teenager she is.

My husband is amazing. I am fairly certain that I would not be alive if he were not with me on this horrible journey. He's the kid who brings Mad Libs and magnetic checkers on long car trips. He's the one who says, "Yeah. This sucks. Let's figure out how to make it suck a little less." He comes to every appointment he can with me, armed with questions to ask during my (less often now) inevitable tearful breakdowns during a medical talk.

He was there when I fired two oncologists. He understands that I can't settle for something or someone, just because it's presented. I don't have to listen to my doctor or take meds that disagree with me, or play Mad Libs if I just want to look out the window. But, when I do, he's there.

 
  Kiku & her talented husband,  jazz trombonist David Gibson , at work with their respective musical instruments. Photo: Lynn Redmile

Kiku & her talented husband, jazz trombonist David Gibson, at work with their respective musical instruments. Photo: Lynn Redmile

  Kiku & David rocking their t-shirts from my friends at  Stupid Cancer . (Fun fact: David's tee was designed by my awesome friend, author/musician/cancer survivor + advocate  Rob Rufus !) Photo: Lynn Redmile

Kiku & David rocking their t-shirts from my friends at Stupid Cancer. (Fun fact: David's tee was designed by my awesome friend, author/musician/cancer survivor + advocate Rob Rufus!) Photo: Lynn Redmile

 

What are five fun facts that we may not know about you? 

  1. I was a gymnast before I started playing trumpet as a kid.

  2. I was a personal trainer when recording work started to dry up, before I became a touring musician. 

  3. I love to cook. I make so much stuff from scratch. My mom taught me a lot in the kitchen. Back then it was "woman's work," but now it's somewhat of a lost art. Hubby and daughter are great cooks, too! I had some dreams of going to culinary school, but that would be tough now, with my lymphedema (from cancer treatment)! 

  4. People tend to think that I'm a social butterfly. My favorite activities include: sitting at home with my husband/daughter/cats/any combination. Though we live in NYC, our apartment is calm. There's a fountain at our entrance; we love lighting and candles and incense, and although we're both musicians, oftentimes there is no music playing. Our lives and careers are noisy. It's important to come home and dump out the clutter of the day. 
  5. The Kiku T-shirt Bra by AnaOno Intimates and Kiku Arm Sleeve, Kiku Gauntlet and Kiku Glove (all by LympheDIVAs) are named after me! 

   The Kiku T-shirt bra by AnaOno Intimates  modeled by its namesake! Photo: AnaOno Intimates

The Kiku T-shirt bra by AnaOno Intimates modeled by its namesake! Photo: AnaOno Intimates