A personal update

Living on fault lines

Needlepoint and photo by Diana Weymar

Dear friend,

There is something I wish to tell you today, something I have long feared but hoped would never come to pass.

Two weeks ago, I received the devastating news that my leukemia is back. I’m currently undergoing chemotherapy, and I have a long road ahead, including another bone marrow transplant.

Earlier this fall, I returned to Paris for the first time since my initial diagnosis a decade ago. It was meant to be a celebratory return, but within a day, I came down with a fever and a bad cough and spent the next week in bed. It was eerie and unsettling to find myself back there, sick again. (I’m never returning to Paris, by the way—possibly all of France. Feel free to send tips on how I can get myself on their no-fly list.)

When I returned home, the cough lingered. I couldn’t shake it for weeks. When I went in for routine blood work, my counts were low, and I was worried. My medical team said that if it would ease my mind, I could get a bone marrow biopsy, though the chances of my leukemia returning so many years later were extremely unlikely. I felt anxious and longed for an answer, so I pushed ahead and made the appointment. My friend Liz drove me to the hospital. On the way over, Oscar crawled into the front seat and onto my lap, and for most of the ride kept his head pressed against my heart.

I’ve written about how hard it is to assume structural stability when your life has been upended by illness or some other kind of loss—how you must learn to live on fault lines. Still I’ve worked really hard to rebuild my life, bigger, better, more beautiful, settled on a strong foundation. But when I got the biopsy results, it felt like a sinkhole opened up and swallowed everything. Within 72 hours, Jon and I packed our things, found friends to care for Oscar and Loulou, gave copies of our keys to our neighbor, canceled work and cleared our schedules, and were on our way to the hospital in New York City. We haven’t been home since.

Everything has changed so drastically, so quickly. I feel shell shocked. There are mornings when I wake up and I can’t actually believe this is happening. Amid the heartbreak, I’m taking comfort in the fact that there’s been lots of progress in cancer treatments in the last decade, and that I’m in the best hands with my amazing medical team. I've been reunited with some of my beloved nurses, like Allie, who called me in tears when she heard the news and offered to keep me company until I got ahold of my family, and Abbie, who left me a little Oscar look-alike during my first week of chemo.

I’m grateful to be wrapped in so much love. I have the most incredible family and friends, and they’re keeping me in high spirits, especially Jon and my brother Adam, who have been glued to my side and are always up to some hijinks. The other day, I was in an exam room getting my vitals taken, and when I came out, Adam asked, loud enough for everyone in the waiting room to hear, “SO HOW WAS YOUR PROSTATE EXAM?”

I’m still processing, still too stunned to parse much meaning from what’s happened. But the lesson I have learned over and over again is to trust your instincts and ask questions when you suspect something is amiss. Even in the minutes leading up to my biopsy, the staff were saying, “Are you sure you want to do this? It’s totally up to you—just to ease your mind.” I felt embarrassed, because maybe I was overblowing things, because a friend had taken time out of her busy schedule to be with me for something that was likely nothing. I thought to myself, “Why did I make such a fuss?” But I was right to trust my instincts, to get the biopsy, to keep seeking answers.

Here’s the thing about self-advocacy: If it’s nothing, you can rest easy and know you did everything you could to care for yourself. If it’s something, you can rally the cavalry and confront it.

It’s been a struggle to figure out how to share this news, and I’ve even wondered if I should share it at all. But private suffering can be deeply isolating. The first time I went through this, I kept it very quiet for a year. The silence felt like a kind of shame, alienating me from everything and everyone and maybe worst of all myself. Since then, I have strived to move through the world as authentically as I can, to write and speak with truth and transparency. Currently, I’m not planning to write about my cancer relapse publicly except occasionally in this newsletter, but to keep this secret would create an ever-widening gap between my lived reality and some public image. Pretending everything is okay when it isn’t just doesn’t sit right with me.

In sharing this news with this beloved community, I’d like to ask a few things: No pity, no advice, no unsolicited medical information, no dietary recommendations, no alternative cures from your great-grandmother’s guru. I appreciate the good intentions behind these impulses, but please know that (unfortunately) I have a lot of experience when it comes to cancer, and I’m choosing the right path for me.

What I do invite is love. I’ve been the very fortunate recipient of so much loving care. Yet there are so many out there who are not so fortunate—and some of them are people in your own life. Reach out to someone you know who might need a little love or thoughtfulness. It’s a hard time of year, and everyone is carrying their own private struggle, and you never know how far your words of kindness will go.

If you want reach out to me, the old-fashioned way is the best way: mail your letters to P.O. Box 201, Milford NJ, 08848. If you feel compelled to do something, and you have the means, you can donate to the Bone Marrow & Cancer Foundation or First Descents, both of which are near and dear to me.

Through all of this, the words that keep coming back to me are from my friend Katherine in Ojai, who I write about in my book: “You have to shift from the gloom and doom and focus instead on what you love. That’s all you can do in the face of these things. Love the people around you. Love the life you have. I can’t think of a more powerful response to life’s sorrows than loving.”

In hope and gratitude and so much love,

Suleika