My soundtrack for proton radiation

Written By Salma Ali

My dear friends,

It’s been a really hard few weeks since the end of chemo. The exhilaration of ringing the bell wore off quickly and the floodgates of physical and emotional pain that had been kept at bay by steroids and by the relentlessness of fighting this disease broke open. It’s why I haven’t written for a while.

But I’ve missed you all, my humanKIND community, so instead of waiting to feel better or to be inspired to write some profound lessons I’m learning from this journey, I wanted to touch base and fill you in on my current proton radiation treatment and share some reflections, with the help of songs that have been playing in my treatment room.

The first thing I see when I walk into room 2 at the New York Proton Center each day is a beach mural, of sailboats on crystal blue waters, colorful beach umbrellas, and a wooden post with bright signs that say St. Croix, Aruba, Bonaire (Yes, please!). But as I turn the corner, the scene is more out of Star Trek—a mammoth 200-ton, 360-degree rotating machine, a backdrop of neon blue lights with a sign that glows proBEAM, a robotic table covered with a white sheet, semicircular fluorescent lights overhead, and a control center on one side. Today was my 14th treatment, and I still catch my breath every time I walk in.

I lie down on the table, or the ‘couch’ as it’s called, in my specific mold that keeps me in the exact same position every time, slip my blue gown off my shoulders and extend my arms overhead. The radiation therapist covers me with a warm blanket, and warm words—“you’ve got this,” she says, “you’re doing great”; amazing how far a few encouraging words can go. The gigantic gantry starts to rotate with a loud whirring sound, taking a CT scan. Once the control team signs off, the ‘snout’ descends, stopping just inches from my face. I have to stay perfectly still; this is when my forehead starts to itch, every, single, time. The first beam comes on, painting the area of my tumor, layer by layer, with sub-millimeter precision. The machine whirs again, rotates, and descends to emit a second beam from a different angle. I lie so stiffly still my neck and shoulders ache; just the tip of my thumb and index finger on my right hand tap ever so slightly as I say my tasbih over and over.

But before this whole process begins, I’m always asked one question: “what music would you like to listen to?” I blurt out whatever comes to mind—it’s been an eclectic array of the Four Tops, Fleetwood Mac, Taylor Swift, Adele, the Bee Gees, Elvis, and more.

You just call out my name

And you know wherever I am

I’ll come running, oh, yeah, baby

To see you again

Winter, spring summer, or fall

All you got to do is call

And I’ll be there, yeah, yeah, yeah

You’ve got a friend

                        - James Taylor

 

I smiled when this song started to play, no tune feels more apt. I am keenly aware how blessed I am to have an amazing community of family, friends, and well-wishers, around the world, supporting me throughout this time—even eight months in I’m continuing to feel the love, care, and kind gestures.

Just in the past couple of weeks that I’ve been in NYC, my mom, brother, sister-in-law, nephews, niece, cousins, a DC bestie, and a friend from London have visited. A dear friend made her beautiful apartment available to us; it’s been a quiet haven to rest. I’ve been craving home cooked food so a friend from my Columbia days made my desi favorites, and my cousin made the most delicious daal. I get to see my kids almost daily, and Arif hasn’t left my side. I am blessed beyond measure, and I don’t take any of it for granted for a second.

When I’m feeling better I want to find ways to support those going through cancer treatment who don’t have a community around them; try to make their days a little easier and let them know they too have a friend.

 


Whether you’re a brother or whether you’re a mother

You’re stayin’ alive, stayin’ alive

Feel the city breakin’ and everybody shakin’

And we stayin’ alive, stayin’ alive

Ah, ha, ha, ha, stayin’ alive

Ah, ha, ha, ha, stayin’ alive

                                    - The Bee Gees

When “Stayin’ Alive” came on I chuckled to myself—yes, that’s the idea!

It is incredible to think about the science, technology, and human intelligence and ingenuity that goes into keeping someone alive from a major disease. Take this treatment for example, which involves a giant cyclotron, high-energy proton beams, and a team of physicists, engineers, oncologists, and dosimetrists to figure out a tailored plan.

It’s never far from my mind that I’m one of the lucky ones—being treated at one of the world’s best cancer hospitals by a leading team of medical professionals, have insurance approved for this specialized treatment, and am part of a trial to improve future outcomes. It’s the jackpot.

It makes me think of an exhibit I recently saw by Suleika Jaouad and her mom, artist Anne Francey, called ‘The Alchemy of Blood’ at ArtYard in Frenchtown, NJ. (It’s what I wanted to do to celebrate our 35th wedding anniversary a month ago.) It was incredible to see Suleika’s watercolors in person; as I’ve written many times she is my inspiration, and her book is always by my side.

There was a particular installation that Arif and I continue to talk about. It shows a video of Suleika in a cemetery picking up hospital bills and medical records that are flying in the wind; the video is projected onto a hospital bed, and Suleika is reciting the dollar cost of her cancer treatment, and then posing the following questions:

What does the body cost?

What is a body worth?

Does a body pay dividends?

What are the returns of investment?

How do we measure the gains and the losses?

What does a body leave behind?

It really makes you think about the value of human life, and the financial and existential costs of staying alive.

I’ve looked at life from both sides now

From win and lose and still somehow

It’s life’s illusions I recall

I really don’t know life at all

                        - Joni Mitchell

This is the one song that I requested by name as it’s one of my favorites. I too feel like I’ve looked at life from both sides now, joyful and painful—but I actually think it’s helped me understand life better. I realize now that illness and pain and hard times are a fact of life; no one is immune or exempt, it’s part of being human. What has helped me cope is to let people in, to say exactly how I’m feeling when someone asks, to share my story with all of you—and realize time and time again that I’m not alone.  

I loved Mitchell’s performance of this song at the Newport Folk Festival two years ago, at 78—her first public performance after a debilitating brain aneurysm in 2015 left her unable to speak or walk. It was her sheer will and grit that enabled her to sing and play the guitar again. I watched her performance, with Brandi Carlile by her side beaming with pride and love, over and over again. I am so inspired by such tenacity.

That’s why after the Olympics opening ceremony, when another phenomenal singer defied her health challenges and sang her heart out, my music request was, of course, Celine Dion.

Thank you friends for being here, it’s good to be in touch again. If you have suggestions for music, let me know, I have 11 more treatments to go! 

We’ll get through this inshAllah.

With all my love,

Salma

PS: My treatment music today—Andra Day’s “Rise Up”, on repeat.

You're broken down and tired
Of living life on a merry go round
And you can't find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

 

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
…

All we need, all we need is hope
And for that we have each other
And for that we have each other
And we will rise
We will rise
We'll rise, oh, oh
We'll rise

 

Salma Ali
Next

The art of letting go