Revelation

Swoops and twirls

Dear Friends —

Lately a few of you have checked in on me to make sure I have TSA PreCheck (yes). Others have inquired about Clear, reminding me it’s well worth the investment (yes, and agreed). This lady is on the road, or rather in the air, quite a bit these days as Scottsdale swoops for my clinical trial are now in full motion.

Beyond the curiosities about travel logistics for my now nearly weekly twirls to Scottsdale, others have wondered how on earth it’s all going. I’m forever grateful for you all keeping me close to your heart, so thanks for the good questions.

My clinical trial explores a new immunotherapy combination — two drugs called Botensilimab and Balstilimab — that showed promising early results in a Phase I trial from last year. As many know, immunotherapy is very likely the future for cancer treatment; it’s shown great promise for many forms of the disease, although less so for colon cancer. But the good folks at Agenus are toiling away, determined to find an immunotherapy path — or what they call “curative therapies” — for lovely souls like me, and millions of souls to come after me. Everything about that is a miracle.

So far I have received four treatments, sessions that vary between receiving both drugs one week and just one drug on subsequent visits. As a practical matter the actual infusions are a snap. Unlike chemo, there are no pre-meds, and the beautiful white liquid that drips into me feels like, well, nothing. Oh and this — it only takes 30 minutes or so, and the whole setup in Scottsdale is practically spa-like. There’s a kitchen stocked with spa waters (ok just waters, but still) and fruit, I usually have my own little mini room, and the only thing missing is a pedicurist. One time someone walked in with a therapy dog named Scout who wanted to share some love for me and my sister-in-law Julie, mainly because we were sort of the only ones there.

Meet Scout, whose job is to be cute. He’s very good at it.

Yes but how am I feeling? Here’s where the answer holds all kinds of mystery. To answer that, let’s back up a smidge so I can tell a story from a few years back.

It was 2016 and the height Hamilton hoo-hah. Lucy was 11 at the time, so naturally she had all the lyrics memorized. The musical was the soundtrack of our lives — I could hear it seep out from under the bathroom door when she was taking a shower, and it was the background music for kitchen meals and cleanup. We could usually manage to squeeze in two songs for the short drive to her dance class. She hadn’t just memorized the show, she had internalized it.

One day at a stoplight, likely on our two-mile commute to her dance studio, she asked the question every mom of an 11 year old dreams of.

“Mom — when Angelica says ‘you want a revolution, but I want a revelation,’ what does she mean? What’s the difference between those two words?”

Hands on the wheel, I listened to her unspool a question for the ages, and I was ready for it.

“Sugar, first of all, you ask the best questions of anyone I’ve ever known. Second, this is probably your best question yet.”

And then we dove in. I explained that while revolutions are sometimes necessary, they are always brutal. They ought to be the last resort, and the collateral damage can last for generations. A revolution is a forcing mechanism, pitting one side against another. The victor gains power over the vanquished, but rarely their hearts. Revolutions often fail.

But a revelation happens from within — a long-game centered on creating an invitation to see the facts at hand in a new way. A revelation is subtle, clever. It gains momentum through dialogue, persuasion, and by listening, adjusting, and then persuading again. Revelations are born in relationships. Revelations often change history.

“So Sugar. When Angelica says she wants a revelation, she’s talking about expanding liberty for women, and she’s smart enough to know the only journey for her and millions of women to come would be through revelation. She knew the way forward would be by changing hearts and minds from within, rather than some kind of outside force. She knew a revelation would take a long time, and ultimately would be far stronger than a revolution.”

We chatted a bit more about it all, and then she jumped out of the car when we reached the studio, ready to dance away her Saturday. I watched her stroll in with her buddies marveling at how Lucy’s generation of girls are growing up with norms far more expansive than I had at her age. Angelica’s call for a revelation changed the world and forever continues.

So here is my rather creative pirouette back to the question at hand: How am I feeling?

Something is happening. I’m feeling fatigue, and sometimes my body temperature swings from a ranging hot flash to surprising chills. One day I felt a deep ache I couldn’t shake, and then the next day it disappeared. My energy level is lower than I’d like.

Unlike chemo, these sensations are persistent. They feel as if they are happening from within. That’s because they are.

Immunotherapy works in partnership with your body, sometimes by teaching your immune system to better target sneaky cancer cells to scoot them off the stage, and sometimes by boosting the immune system to bring far more resources to the healing task at hand. The drugs collaborate with the body’s own natural defenses, a harmony that can last a lifetime. A long lifetime.

As I’ve written before, chemo is its own miracle, and yet it’s an outside force. An onslaught that can accomplish mighty outcomes, chemo exits after the bombing brigades have hopefully hit their targets.

Chemotherapy is a revolution. Immunotherapy is a revelation.

Here’s the thing about revelations — they are mysterious. Every once in a while a revelation can find an express lane to gallop to goodness that’s nothing short of dazzling.

Other times revelations take a steadier, more incremental, path. Course correcting, learning, iterating. It’s as if those who set a revelation in motion understand that the outcomes will create a world where the beneficiaries will marvel that their ease was once someone else’s hardship.

In a year, Lucy will be able to vote because a revelation was put in motion centuries before. Will she think about Emmeline Pankhurst when she does? Will she know Emmeline put a curative therapy in motion more than a hundred years ago? I hope so.

And now a revelation is underway within me. Are my cells learning from two new drugs now teaching them a new way to get after the mets in my lung? Is my immune system inspired by all these fresh insights from the drugs, creating a reimagined set of cellular norms — a future — that will be far better than the one before?

I have no idea. I hope so. This summer we’ll find out if this revelation within me is sparking fast progress. Perhaps we can all pray for that.

What I do know is that within days of my diagnosis in the summer of 2019 my late night laments were centered on living long enough to see Lucy graduate from high school. And now those days are upon us.

Prom night is for angels

In just weeks she’ll cross that graduation stage to begin a grand new chapter. She’ll join her brother at Chapman University where she was admitted to the Dodge Film School, which means one day Lucy may spend her days bringing the most important stories to life. Through those stories, new revelations might begin, and as my friend Chip likes to say, “the future will become so delicious we’ll want it right now.”

The future I dreamt of the summer of 2019 is so very delicious — I know because they are days I’m living now, and living fully. We’re celebrating prom, and graduation, and final dance recitals.

We’re twirling. We’re celebrating life.

xoxo

p.s. The good folks at the FDA recently announced they are fast tracking my immunotherapy drug combination, a hopeful sign that this revelation may be the gallop variety. What’s more delicious than that?