An Invitation

Easy and delicious: cut butternut squash into inch-thick rounds, bake on an oiled cookie sheet at 375° until soft and fragrant and brown around the edges. Shown here topped with hummus, cracked pepper, pickled red cabbage, and cilantro. Yum.

Christmas morning I could no longer deny the swelling around my right elbow. The tightness I'd been feeling all week, the stinging, aching pain up my arm, I finally understood, was my overtaxed lymph vessels, taut as guitar strings under my skin. "Cording" they call it, or, if you like to sound fancy, "Axillary Web Syndrome." It's considered a complication of breast cancer treatment and, some argue, a risk factor for lymphadema.

I have been dreading and fearing lymphadema since before my mastectomy, when I first read about it. The internet is fairly teeming with images of women with one arm bloated double in size alongside hyperbolic headlines calling the condition "breast cancer treatment's dirty little secret." Scariest of all, once the swelling comes, you spend the rest of your life trying to manage it. Sometimes better, sometimes worse, it never truly goes away.

Lymphadema is no secret. Before radiation, I was sent to a physical therapist to educate me about the condition, and to be fitted for a compression sleeve. I received two, which I tucked into the back of my sock drawer, just in case, hoping never to retrieve them. I was told that once surgery removed the cluster of lymph nodes under my arm and radiation damaged those remaining in my chest wall, my chances of contracting lymphadema would rise to 50%. In my gut, I believe I didn't need to have all my lymph nodes removed, (only two of the twenty-odd taken were cancerous), but modern treatment is still relatively crude, and my particular cancer scenario would not allow such half-way measures.

I was also told by oncologists and physical therapists alike, "You won't get lymphadema. You're young. You're fit. It won't happen to you."

But Christmas morning I could not deny it. I have lymphadema. I have been crying and raging about it ever since, wearing the compression sleeve intermittently, stretching against the pain to recover my range of motion, checking my arm as the swelling ebbs and rises like a tide. It's mild, but it's there. And I'm afraid that it will get worse.

For weeks I have not been able to bring myself to write on this blog, not in depth, anyway, as I knew I'd need to tell you. It's emotional for me to put my mind squarely on this new development.

But this morning I awoke to a message from my brother. After a long and valiant battle, cancer has claimed the life of one of his best friends, a fixture of my own childhood landscape as well, and a special person I was only just getting to know.

A few days before that, I got an email from another childhood classmate, requesting advice. She has just been diagnosed with breast cancer. She wants to know how long she can hide the news from her children.

Another childhood classmate is also fighting breast cancer, an advanced and aggressive form which has taken up residence in multiple organs, including her brain. Another old friend has been battling since she was twenty-five. The cancer is in her bones.

So today I practice the yoga of weeping. Today I am stretching to embrace the dead, the widowed, my friends fighting for their lives, my own life ahead of me, swollen or not, without guarantees.

Let us all stretch to be loving companions along this treacherous, beautiful, heartbreaking road. I hope we can walk it together for a long time to come.