Wednesday, January 11, 2012

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.


Kerry said...

I'll weep with you, honey.

Anonymous said...

You are so inspirational. Thank you for sharing your story. I hope we can walk a long time together..and bike and swim too. Kris

Anonymous said...

I'm sorry about the edema. I hope that in the future this goes away entirely. I love your thoughts of the dead, dying, fighting and living.

R said...

Sometimes for others, sometimes for ourselves; on this road we all weep. No matter how strong I am, I reserve the right to grieve the losses and weep. Thank you for your blog.

In Due Time said...

Oh Amy, I am so sorry. :( I just wanted to let you know I love you! I don't comment very often, but you inspire me in so many ways. :) Hang in there. xoxo

(On a side note, I just wanted to say I love your food videos/pics. Thanks to you I made soup the other night. I chopped away like you did in your video and thought about you with every chop. Ha!)

Anonymous said...

I'm so sorry Amy - this shouldn't happen anymore. BC treatment remains way too barbaric and crude. I know you will manage it. But I understand..just another thing, yet a sign that you are alive.

They removed the sentinel nodes in my arm and last visit told me that mastectomy patients (bi-lateral) sometimes opt for injections and bp in the leg as an alternative. Science and human caring needs to catch up to avoid creating a world of fix one, create another ailment.

Anonymous said...

Hi Amy--very sorry to hear about all of this. Re lymphadema, I am hoping that this will be manageable and that, through experimenting you will find a way to beat it back effectively. I've got to believe that your comfort level around swimming will serve you well. Spekaing of, Is there *any* chance that you could have overtaxed your arm swimming (I've gotten "tennis" elbow from ramping up yardage too quickly.) Or possibly a combination of too much yardage and that side being prone to issues? Thank you, as always, for your amazing writing and raw honestly.


Paula said...

I'm sorry this new development is clouding your life. Sometimes it's the fear of what may come that makes it worse than the current uncomfortable reality. Although there are days that it's really, really hard, I try to focus on the reality of today rather than the maybes of tomorrow, which may be great or horrible, and likely will be somewhere in between.

You also inspired me to pick up some miso and make a delicious soup, one with root vegetables that was so hearty. Thank you.

I wish you less frustration and worry and good health.

Paula said...

Oh, I also wanted to ask you for a miso recommendation. Although I love the sweet white miso in the tub and the brown miso in an instant packet, my kids didn't like it and said it didn't taste like the (less earthy, less hearty) miso soup they get in Japanese restaurants. Any suggestions?

Kerri said...

Amy, I'm so sorry to hear about the lymphedema and about your friends. No two ways about it - cancer sucks.

After my lymph nodes were removed, I had cording which gave my arm a sensation of tightness/heaviness and some swelling. I was convinced I had lymphedema and would be struggling with it the rest of my life. Through stretching and massage by a physical therapist, the cording has been broken up and the lymphedema-like symptoms have gone with it (so far, at least - knock on wood).

Obviously I don't know if the same might be true for you, but I really hope it is. I thought that with your swimming, you would definitely dodge the lymphedema bullet.

And just to comment on Paula's comment - while I agree that focusing on the here and now can often help avoid a lot of pain, I didn't get the sense from Amy's post that she is suffering because she's living in the past or future. Sometimes there is a lot of pain in the moment, and the only thing to do is to surrender to it - or as Amy said so beautifully, practice the yoga of weeping.