“It entails a different kind of return: arduous, uncertain, unpredictable, and alive. It is a return not to what was, but to what is, and what might be. It is a return not to who we were, but who we long to be.” –R. Sharon Anisfeld
It’s the time of year that calls us to return to school, to routine, to shorter, colder days. I am also facing another return: that of the chordoma tumors along my spine.
Hearing last March that I had new and growing chordoma tumors throughout my body, mainly along my spine, knocked the wind out of me. Before, I had wanted to avoid a recurrence at all costs. Now it was here. Again. My third recurrence. I cocooned in the house to metabolize the news and the news from around the world, waking regularly at 3am, full of fear. This went on until my former student Chloë Zelkha, a rabbi, changed the word “return” for me in her phenomenal blog, Between Chaos & Light.
Chloë wrote something like, “Return and repair are what cement the world together.”
“Like sewing!” My friend Tania exclaimed. “To truly strengthen a seam, you go back over it, loop stitches over one another to make it even stronger, more resilient.” I hugged her tight, thanking her for reframing “return.”
The fabulous Chordoma Foundation helped me find a clinical trial out of Los Angeles. This is a Phase Two trial of already-approved FDA drugs, which means no one receives a placebo, the medications are proven to be safe and effective, and everyone gets treated. It involves an IV infusion of targeted chemotherapy and immunotherapy every three weeks, indefinitely, as long as my system tolerates the drugs, and as long as the tumors respond. After qualifying in April, I now travel every three weeks to Providence Hospital in Santa Monica, CA to receive state-of-the-art care from an incredible team of researchers and clinicians.
I have had 7 treatments and so far, so good. I feel strong. I am not losing my hair. Sometimes I have crushing fatigue like, “Hi person-boarding-the-plane, do you mind if I nap on your shoulder?” kind of fatigue, but otherwise the side effects are manageable. The treatments are especially tolerable because I get to stay with generous, dear friends whom I met when I was twenty-five and their daughter’s French teacher.
A quick word about clinical trials. They are no longer a last resort. They are key aspects of identifying and testing new treatment options that are becoming available at a rapid pace. The Chordoma Foundation has been instrumental in fast-tracking trials for someone with a rare bone disease like mine. These trials act like stepping stones into an unknown future and are the best way to manage a disease that doesn’t have an abundance of options.
I choose to see clinical trials as sporty test vehicles at a large car dealership, waiting for us to hop in and go for a drive. One is bound to fit perfectly. Yet that doesn’t mean I am not still terrified of this disease and what it means. There is just too much uncertainty. I feel like the car I’m test-driving is great, but the headlights don’t work. I can’t see where I’m going. Worse, nobody else’s headlights work either. A semi-truck could be coming straight at me and I would never know.
None of us know, though, do we? One endearing thing about humans is that we’re actually terrible at predicting the future. It doesn’t look the way we thought it would look. Life doesn’t go the way we thought it would go. And yet we keep going, wondering how to love the world with its sorrow, heartbreak, and devastating realities.
One way to love the world is to cultivate an unyielding radar for beauty. It’s difficult here on earth. It’s also beautiful. Each time I return to Colorado, I sleep for two days, work in a frenzy for four, then head straight for the mountains, often alone. My friends think I’m nuts to camp solo, but it’s medicine for me. I’m away from distractions and the darkness and I can step naked into the freezing waters of a Rocky Mountain river and take on its vitality. In the mountains, I am not patient #4. It’s a different kind of return- to my original self: silly and strong. I feel like I belong here as much as the elk, the fir trees, and the bolete mushrooms.
In the mountains, I practice paying attention to wildflowers, birdsong, and finding ripe raspberries. Paying attention is a kind of accessible prayer for me and I feel like praying a lot these days. I stare at clouds reflected in the water and fish slicing through that watery sky. I climb to the headwaters of a mighty river, in awe that the water rises up from inside the mountain. “Mountains have insides,” I say out loud, shaking my head in disbelief at all the things I still don’t know or understand.
Then one night I can’t find my headlamp and I am forced to walk back to my tent at the darkest point of the night. I’m walking without a headlamp, but somehow I can feel my way home. This leads to a simple understanding: I can do this. We can find our way in the dark, even when we have no idea how. I think back to the idea of test-driving a car without headlights and my fear of uncertainty and not knowing. Maybe I had it wrong. Maybe uncertainty is not as scary as I think.
The scary part seems to live in the familiar, the knowing –knowing that my options to treat chordoma are limited. Knowing that the actor, Gary Sinise, buried his son last year with this disease. Knowing that the world news is going to get worse before it gets better. To love my life, I have to love all of it.
It is in the uncertainty, in the not-knowing that doctors are discovering new treatments every day. In the not-knowing, light is both particle and wave. In the not-knowing, a river is born under rocks, inside a mountain. When I find my way back to the tent, I stand outside, slack-jawed and empty-handed under the stars. I remember that my god has always lived inside mystery.
Last week, I finally felt ready to be around other people – in small doses. I was lucky enough to be invited to Katie Arnold’s Flow Camp at High Camp, a hut at 11,000 feet in southern Colorado with a handful of like-minded writers and hikers and yogis. In this stunningly beautiful place, I went from feeling fragile and broken to strong, patched up, and restored. Honestly, I felt twelve years old. I had dirty knees and elbows from lying on the ground, staring at Axolotl salamanders in a high-mountain fen. Here was an animal, once on the brink of extinction, now recovering. They have remarkable healing abilities and can regenerate limbs, but also eye, heart and brain tissue. I shook my head again at all that I don’t know or understand. Healing is possible. In this moment, surrounded by inspiring people and magnificent creatures, I realized that I’ve never lost conviction in our immense capacity to redeem, rebuild, and re-member the way forward. Return is not a death sentence; it is renewal.
“Return to the strange idea of continuous living, despite the mess of us, the hurt, the empty.”–Ada Limón “Instructions On Not Giving Up”
I want to leave you with a note about a lost word. Kathryn Grody (who has a remarkable one-woman show The Unexpected Third on right now in Philly! Go!!) recently introduced me to the little-known word respair, which first appeared in the early 1500s, but then inexplicably vanished from our vocabulary. She and I are bringing it back! It feels much needed now. Respair is the opposite of despair and means “renewed hope; recovery from despair, anguish, or hopelessness.” Respair also evokes the French verb, “respirer” – to breathe. Maybe we can breathe our way through despair to hope and action.
I’m at the airport now, returning to Los Angeles for my 8th infusion, a lot less afraid than before. As Rabbi Anisfeld writes, “[Consider] it a return not to what was, but to what is, and what might be.” My scans in July showed the treatments are working – the tumors are stable, some are even showing signs of shrinkage. Wahoo!! The next scans are October 13th and 14th.
To map the future, I’m picturing my own hands sewing the frayed hem of my spine (and PacMan gobbling up the bad cells). I’m visualizing salamanders and sunrises. I also see all of you, waking each morning, determined to face with respair the difficult beauty of this world.
Love,
Susie
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