You Don’t Know Until You Know

It’s not the ones with the same diagnosis. It’s not the ones who can’t sleep, thinking about future tomorrows. How many days are left until things change. Until they slip away. It’s the ones whose eyes burn into me as if they know my mind. My future. They carry my story just a few beats forward or maybe at the end. Cancer doesn’t just consume my workday with hours of consultations. It consumes my showers and spills into the spaghetti sauce as I cook dinner for my family.

Cancer taught me that it isn’t just for others to carry. The ones that I get to watch. It became my path the day my husband woke me up. He was diagnosed with metastatic prostate cancer, trailing up to his lungs. And then, another turn when the COVID pandemic just started to abate. Medical centers opened back up for mammograms and I collected the outcome of mine. There are dozens of cancer stories I carry in a day. Now, I carry my own personal tag.

My breast cancer was caught early. With a lumpectomy, bout of radiation and five years of pills, my doctor said it would be a blip on my screen. A blip. As if the scars wouldn’t leave a toll. Indeed, treatment was over by Christmas. What I didn’t realize after working in palliative care was that cancer is less a physical disease than an emotional one. How did I not know that? I’m a palliative care therapist. But you don’t know until you know.

The pain wasn’t sharp like the surgeon’s blade. It was insidious like the tumor that wormed inside my breast. My husband’s prostate. Our collective bodies and the many voices I sooth. It started slowly and then took off. At first my heart was too numb to cry. And then it was all I could think about. Feel about.

As my cancer moved to the rear-view mirror with menacing eyes that it could return, I knew it wouldn’t, at least for a while. But my husband’s is here to stay. Now, our stories, his, mine, and our two kids, would require me to wear an emotional backpack at work. I must keep the grief tucked away so I can focus on others. I must protect my children as one closed in and the other broke down.

We talk about dementia patients and the long goodbye. But with my husband’s cancer there is going to be the surprise goodbye. Will it be in months or years? Will it be short or long? I counsel my patients to live in todays while my mind rushes ahead with questions of tomorrows.

Stay in the now? One step at a time? Are you kidding me? I rage.

It’s now me, who looks for teachers. Not the ones at my consult groups or at busy conferences. It’s the teachers that live with cancer – my patients. It’s those in my grief group that show me ravaged hearts that go on to heal. The voices of patients and bereaved now comfort me in a way that professionals and colleagues can’t. My patients’ eyes that burned through me now shine light for me. Because you don’t know until you know.

You don’t know until you stop to listen. To hear heartbeats and drums. To remove white coats, egos, and assumptions. To remove empty promises or formulaic platitudes. I want ears to hear me out. To teach my husband’s team to trust us, to hear us. Not the other way around. Forget the captain of the ship. Let down the curtain between me and you. Get to know me, my husband, as teachers of your future. We, the ones ahead of you.

Imagine your cancer that is to come. Does that crawl against your skin? It scared the heck out of me until the doors opened without a choice and I had to accept the challenge. The sad and unrelenting fact is that it could happen to you. Sit with that.

If you want to partner with me, partner with the part of yourself that is me or will become me. As I cradle my mortality, my husband’s, please cradle yours. Because textbooks mean nothing and prescribed interventions that we are all so proud of, are just distractions that separate patient from provider.

The care you can give me, my husband, is a mirror that lets me see deep into you. That if you haven’t gone where we have, at least be willing to learn from those that have. Because you don’t know until you know. And with this request, I give the same to myself. To remember every day that I’m not that special. The letters on my wall were given by the work of head. Not the path with heart. I must check my ego, my training at the door. As my heart breaks open for others, it breaks open for me. The way forward for all of us is through. The door is open, and the lights are on.