Updated: Nov 2, 2021
(Editor’s Note — 1120 Press is honored to present this powerful essay and original artwork by artist, designer and writer Flori Hendron, a 25-year breast cancer survivor who for the the last 14 years has been living with Stage IV metastatic breast cancer — also known as MBC. The founder of an art program for cancer survivors at Cedars-Sinai Hospital in Los Angeles, Flori was among the first to be certified in Social Emotional Arts through UCLArts & Healing. Her extensive advocacy work includes involvement in The Right Dose, a patient-centered dosing initiative and The Breast Cancer Brain Metastases/Marina Kaplan Project that aims to accelerate evidence-based research for patients living with brain metastases and leptomeningeal disease. We’re proud to bring you Flori’s inspiring work.)
They call me a Unicorn because I am living nearly 15 years with metastatic breast cancer.
They say — ‘Wow, 14-and-a-half years! Oh – you must be Her2 positive.’ — disdain dripping from their voices.
It pisses me off.
Sometimes I defend my cancer and say Her2+ used to be a death sentence. Twenty five years ago, I received all the wrong treatments for Her2+ — a cancer that tests positive for a protein known as ‘Her2.’ While this type of cancer tends to grow and spread faster than other breast cancers, it also is likely to respond to treatment with drugs that target the protein.
I was only 38 when diagnosed. Just having a breast cancer at age 38 is bad. The younger you are, the more aggressive your disease tends to be.
I had to be brave and do whatever it took to be alive to raise my kids. They were only six and eight at the time. I had to research. In addition to being a mom and a wife and a designer, I had to be a doctor. And not just internal medicine – I had to be an oncologist.
After my shocking diagnosis, I did seven rounds of CMF — the horrible stomach-burning, acid-washing, nausea-inducing, hair-thinning, skin-drying, eyelash-ruining, nail-breaking, cold-sore-making, nerve-numbing, healing-retardant chemotherapy.
Yeah, I was fucking brave. But nothing went my way.
Sentinel node dissection, where they inject dye and only take out lymph nodes one by one to determine if they have cancer, was still in clinical trial. I just missed that opportunity.
Instead, I had a full lymph node dissection, in which the surgeon takes a blind scoop of tissue from your armpit. I had 20 nodes removed. Not a single one had cancer.
And then one week later, sentinel node dissection received FDA approval. Fuck me.
So, I adapted to not having lymph nodes and to being meticulously careful with my left side.
I joined a “women together” support group at UCLA. Sharing our sad breast cancer stories. That’s where I heard that acupuncture and Chinese medicine helped. I beelined to Dr. Dao in Santa Monica. Every week: acupuncture and stinky teas, a nice Jewish girl fighting to adapt to Chinese medicine.
The other hot topic was Lymphedema, a condition when your arm missing its lymph nodes can swell and look like a large baloney arm. FUCK. I didn’t want a baloney arm. I am a salami-on- rye-kinda girl.
Get a compression sleeve, wear it all the time. I looked into that and I got one and I hated it so I wore it none of the time.
After treatment was over, I was in “remission” for around seven years. Then, I had what is called a local ‘recurrence.’ And my oncologist and I decided that it was off-with-the-breasts time, and I wound up having both my breasts amputated with reconstruction. And even though they promised I wouldn’t need chemo after recon, there was too much cancer in the pathology report, and I wound up back on chemo. I was beginning to see a pattern where doctors lied and I cried.
Also, NONE of this felt very Unicorn-ish. It wasn’t magical, there were no rainbows, no sparkles, no hoofs, no glitter, no rainbow hair.
So, I sucked it up — my fear, my disappointment, my worry — and I did more chemo because I wasn’t finished being a mom. And I wasn’t finished living.
But then my new chemo wasn’t working and I know this because I had a snail-trail skin rash that was actually skin lymphatic spread on top of my brand-new left “breast”. And while all the other cancer-warriors got to shave their heads and sing their fight songs and do their marches and be warriors, I had to watch my cancer spread. It was fucking terrifying. I was marking the snail trails daily with blue ink from a Bic pen. How did this become my living hell?
But the doctors were excited. This snail trail was an opportunity to see which chemo would work. I was rolling chemo treatments trying to find something to arrest the spread. And I finally qualified for Herceptin. After one infusion the snail trails began to retreat. My surgeon took me back into surgery to remove the contaminated skin and to try to get clear margins.
I continued on Herceptin for 20 more months— stopping in April 2004. I was finally NED — No Evidence of Disease!
Fast forward to 2007.
I trot in for my routine checkup and my markers have jumped the first gate. I am sent to the Pet-scan barn to see what’s going on. Devastating news: I have metastatic breast cancer. Terminal. It’s in my lungs, my sternum and one little fucker in my rainbow brain! Stage 4 of 4. I’m not going to be running the Kentucky Derby any time soon.
After 11 years with my oncologist, I no longer wanted to ride side saddle. So, I left him. It was like another divorce except this time I was the one cheating and seeing other oncologists.
I had to save myself, and my new doctor supported my ideas. And she facilitated innovative targeted therapy combinations which allowed me over a decade without many side effects at all. In fact, most people didn’t know I had cancer during that decade. Only my small inner circle.
And here I am today after the last two very rough years, with LMD — Leptomeningeal disease and brain mets. Stage 5 of 4. And I find I am having to defend my cancer. Defend my cancer! Because other people with cancer roll their eyes when they hear that I have Her2+ MBC. As if that’s some kind of a cakewalk cancer.
Unicorn? I think not. More like the Lucky Charms leprechaun.
It’s not my fault I have a money-maker cancer. It’s not my fault that big pharma decided to capitalize on my cancer. It doesn’t make me a dime, nor does it make me a Unicorn.
If you can’t respect my cancer without an eye roll or a sarcastic labeling of ‘Unicorn,’ I say move on. Don’t whinny to me, don’t ask for sugar cubes, or an apple, don’t ask for a carrot of my advice.
You do you. And allow Her2+ me to do Her2+ me.