Behind the Curtain: Rare, Special & Worth Fighting for

My Dear Friend,

All my life I’ve been told I’m different.

Growing up, adults said I was "unique", other kids used the word, "different" or "odd". It was meant as a compliment from some but not always, and it didn’t feel like one. To me, it meant separation, that I didn’t quite belong where everyone else did.

Sometimes, it wasn’t said kindly, it came with condescending eyes and tilted heads. "What are you?” As if a mixed race girl was some kind of anomaly in California?! As if my existence needed explaining before I could be included.

I loved to perform, yes, I was a Theater kid. I spent years in ballet, but my body didn't fit the part (thanks again, boobs). I didn't dress like the other girls either. In the 80's/90's when most of my classmates were wearing the mall brand uniforms, I was haunting thrift stores, by choice. I pulled together oversized blazers, African prints, Indian tunics, military boy shoes with 1950's dresses. Walking into school meant enduring the look and some comments,"You're so...unusual". At first, it it could have felt like resignation, giving into the label I'd been handed. I think it was more of my first expressions of saying, "If I can't belong by your rules, I'll write and wear my own."

Then came the movie, Pretty in Pink. When I saw that clan of three: Andie, Iona and Duckie, I knew. Their thrifted and hand sewn creativity, their refusal to blend in, their unapologetic way of being "too much" or "not enough." I watched that movie and thought, I don't just adore and relate to Andie. I'm going to find my Duckie.

For most of my life, different became my language, a way to turn what set me apart into something I wanted to feel was just, me.

Lately, that word has evolved. It's not a movie where someone sings " Try a little Tenderness" in a record store by Otis Redding.. It’s grown up with me, changed shape, and come back under a new name: rare.

The Pause That Changed Everything

My last newsletter, "The Cruelest Wait" ended with a pause, my doctor repeating the biopsy by her own team and then waiting for results that could shape everything ahead. She wanted to make sure these results were absolutely accurate, not out of doubt but determination. She wanted the full picture before choosing a path forward.

One of the things she was looking for was something called PD-L1, a protein that helps cancer cells hide from the immune system. If it's positive, it means the cancer may respond to immunotherapy, a treatment that helps your own immune system recognize and attack what shouldn't be there. And still, as we all know there is the lupus lurking behind ready to sabotage.

Those results finally came in.

They didn’t just confirm the plan — they changed it.

 Somewhere  in the middle of all of it, that word rare showed up again.

Every doctor I’ve met seems to say it. My current oncologist softened it a little, “Let’s say special,” but it still landed heavy.

She fought for a frontline combo that is only being used in clinical trials and those doors are closed to me. It's rare. and it's aggressive, in a good way. She said she'd fight to get it approved, even if insurance pushed back. Her exact words: "If I can get this, it's better.. a little more effective, a little less toxic."

So now we pivot. Changing from an FDA approved chemo combo to a hope. And just like that, the meaning of rare shifted again.

Rare doesn’t always feel like a gift.

Sometimes it feels like isolation.

Like being handed a map no one else can read.

But then again, I’ve been living without a map my whole life.

Approved in less than 24 hours!

Until It Doesn’t Work

I’m two rounds in now and I still can’t get used to or comfortable with the question, “How many will you have?”

There isn’t an end, at least not yet.

My doctor says, “until it doesn’t work.” Then we move on to the next horse in the race.

That’s the kind of sentence that lingers long after you’ve left the office.

I’m still in disbelief that this is really happening. Some days it feels like I’m watching it from outside my body, the scans, the infusions, the careful explanations. Other days it’s so real it’s almost unbearable.

I keep painting small moments in my head just to stay present:

the light against the IV pole, the squeak of nurses’ shoes,

the way my husband holds my hand like it’s a tether to the world.

It’s strange what the body remembers when the mind can’t make sense of anything.

The Getaway Before the Storm

Before treatment began again, we escaped for five days to the coast. My husband and my kids to meet up with my Uncle and Aunt for their Anniversary, which did not feel like accidental timing. Because, besides my immediate family they are the most important people to me.

It was exactly what we all needed.

A reset before the first round, surrounded by salt air, a beautiful beach house with a constant ocean view of either a sunrise or sunset that you can drink coffee or wine to. It was laughter and the comfort of family.

My Uncle Bob, who has always been my kindred spirit, the mirror for truth-telling and the image of loyal love.

The evening we gathered for dinner to celebrate his and my Aunt Bonnie's Anniversary, he was asked, “After so many years of marriage, what’s your advice for those who are looking for a successful marriage or those still early in their search?”

He smiled that steady, knowing smile and said,

“Find a way to fall in love with your wife every day. For me, she has made it easy.”

Later, my husband shared a post that made me (of course) cry when I read it:

“Honoring 65 years of love, integrity, and devotion fills our hearts with hope, joy, and affection.

My wife and I are deeply satisfied that our children Kameron, Danna and Kolton are with us to enjoy this together. Hopefully, soon we can add one more name to that list.

As my wife and I sojourn back to treatment and face the cruelty that our unwanted guest dishes out, we armor ourselves again with love and resolve. In the moments that will no doubt be difficult to bear, we will reflect on the joy that overflows from these memories.

This May, I concluded my anniversary letter to my wife with,

‘You will always be my Lizzie, and I will be your Mr. Darcy… Let me correct that.

I will always be your Bob, and you my Bonnie.’”

I read those words and thought, this is what rare should mean.

Not a medical label.

A love that endures, even when life keeps rewriting the rules.

Praying for Unremarkable

After one of my IG Stories, so many of you wrote to me about the word rare.

How it lands differently for everyone.

How it can hold both beauty and pain.

One message stopped me in my tracks:

When my sister in law was really sick we usd to pray for "unremarkable" test results. Those were the best ones. It was a little inside joke...praying for everything to simply be unremarkable. So much so that I've thought about a tattoo of the word.

Now I'll pray that for you too, A beautiful and "unremarkable" life.

I've never got a tattoo but if I did: unremarkable

That word has stayed with me.

After a lifetime of being called different — and now rare — I’ve started to realize that maybe the truest peace isn’t in standing out.

It’s in the quiet mercy of feeling ordinary.

Of having a day that doesn’t break you or waking up to find there’s nothing new to report.

Maybe unremarkable is what we’ve all been praying for in our own ways.

A day where we don’t have to explain what makes us rare.

A life that doesn’t need to prove anything to be beautiful.

Some days I am the rare find, fighting for my life.

Other days, I just want to blend into the background and let the world forget I’m sick.

Both versions are true. Both are me.

                                                Love and gratitude

                                                                xo,