Camp Radiation

The dogs are at odds this morning. They usually play fight and nip at each other’s ears and paws for hours—the boys call it the Morning Match, the Afternoon Attack, and the Dinnertime Duel—but there is an edge to it today. Some yelping, a growl. One knocks the water bowl, the other slinks under the dining room table to sulk during the Morning Match. Maybe they’re trying to fill the gap of the lack of conflict in the house with the boys gone.

John just left to pick them up from their week at Cancer Camp. I guess we’re going to have to stop referring to it so breezily now that they’ll be home. Camp Kesem. A camp for kids who have a parent dealing with or dead from cancer. A tiny beautiful loving little nest of a place. I wanted to go back up into the Shenandoah’s with John to fetch them but I am not up to it. This latest treatment has been grueling.

I have a new tumor on my spine—this one at T12 vertebra, a few rings above the last one. Also some new cancer at the site of the last one. Plus the ones in my hips. For this treatment they give me a much higher dose of radiation than what I’ve become used to, and because the tumor is resting right next to my spinal cord, precision is that much more important. They made me my own personal body mold to hold me in the exact same position each time.

“Scootch up in your cradle a little,” says Nelson the radiation therapist as I lie on the metal table, “We need to line up the lasers with those crosshairs on your belly.”

After 45 minutes of angling and measuring and scootching and waiting, my arms—placed above my head—go numb and start to cramp. I’m dehydrated from spending the drive home vomiting after the last treatment. I wiggle my shoulders and Nelson’s partner Kelly pops up at at my head almost instantaneously. “You can’t move baby. Not even a twinge. Now we’re going to have to do the imaging all over again.”

“I’m so sorry,” I’m saying. I’m trying not to cry.

“I know,” she says, patting my thigh. “It’s not your fault, but you have to try harder.”

For the last five days John and I have been sitting around doing what all the other camp-sending parents do I guess: basking in our serenely quiet and clean house eating crackers and cheese and beer for dinner on the couch while simultaneously hitting the refresh button every two minutes on the Facebook page where the Camp posts hundreds of daily photos.

“Did you see the one of Freddy photobombing the counselor photo? Typical.”

“Yup. Did you see the one of Benny in the paddleboat with his stuffed animals? I think he was smiling. Do you think he was smiling?”

We’ve both been nervous about Benny—a profound homebody and on the very young end of the campers. And stubborn as hell.

It’s Freddy we get the call about, though. Yesterday afternoon. Joy—whose camp nickname is “Spring”—isn’t Joy already a pretty solid camp nickname?—is on the line. Everyone has self-selected camp nicknames. The camp directors go by Wallaby and Lotus.

“Foxtrot and The Platypus are both fine,” she says, “But we’ve been having some behavior problems with Foxtrot the last few days. He doesn’t always listen when he’s asked to do something. And yesterday during Feet on Bed Time, he and a friend were roughhousing and kneed another boy in the privates.”

Oh, Foxtrot.

“I am so sorry, although I am not super surprised to hear this,” I say. “Foxtrot has these issues at home as well.”

“No biggie,” she says, “He’s a trip—smart, hilarious, super responsible with his diabetes care. Just didn’t want you in the dark on this because he won’t be welcome back to Camp Kesem if this behavior continues. It’s too sensitive of an environment.”

“Of course,” I say. I’m holding the phone lying in bed with a scented sleep mask over my eyes to keep the nausea at bay. “I get it.”

Looking up helps—with nausea and when your kid is on the verge of getting kicked out of Cancer Camp.

Two days ago on the way home in the car while I was puking over and over again into the McDonald’s bag, my dad—my poor dad!—spotted some kind of dirigible up in the clouds over Graham, not far from the Embers Motor Lodge where the scooter patiently waited.

“Look at that,” he said—and we did, admiring its noiseless, almost imperceptible movement from where we were on highway below. I like direction that looks aimless but isn’t. Just subtle. Just making it’s way without hope, without despair. Isn’t that what Isak Dinesen said about writing? Same with living.

“That Platypus though,” says Spring, before we get off the phone. “He’s his own man, isn’t he. He’s doing just fine.” Surprises.

My last radiation blast is Monday. Yesterday’s aftermath is already better than the first with anti-nausea meds and steroids and some fluids on board. Once I get through this we get almost two weeks of vacation. We’re headed up to Cape Cod. It will be the one-year anniversary of losing my mom.

The big picture remains a little hazier. Other than radiation, there aren’t a lot of other treatment options available, although this landscape is always changing. The big hot thing in breast cancer (and many cancers) right now is immunotherapy, but it is still largely only available through clinical trials (unless, as the Queen said, I wanted to donate a building to Duke Hospital or something).

I am not eligible for any of the trials yet, unfortunately, because I have to fail another round of post-metastasis chemotherapy in order to qualify. That’s fine, but the problem is that the Queen feels strongly that it is my immune system that is keeping the cancer from taking off like wildfire right now, and more chemo that is unlikely to do anything will only deplete my immune system (this is her theory on why we are here to begin with).

So it’s a tough call. Plus all the of the US-based immunotherapy trials are still currently randomized and blind, which means you only have a 1 out of 3 chance of getting the actual drug and not the placebo.

The dogs still haven’t quite settled down. John should be home with the boys sometime mid-afternoon. MacDuff is standing on alert at the front door—barking at every Saturday morning lawnmower that growls on, every weed whacker, every bike wheel that tick-ticks by.

Ellie is lying at the foot of the bed. She can no longer hear or see very well. But if she feels me roll over in the bed she’s up standing at attention in a split second, staring at me. “What are we doing,” she implores. “What’s next?”

“I have no idea, you crazy beast,” I tell her, patting her head. “Let’s wait and see.”

40 thoughts on “Camp Radiation

  1. Great nicknames! Every mother secretly wants a kid she can call Platypus. And yes, you write like an angel, Nina, but how I wish life weren’t handing you quite so much material. I hope you were able to enjoy the Cape. Love.

    Liked by 3 people

  2. Nina, a message from a stranger a couple states away who found this blog after reading your Modern Love column in the NYTimes. My mother loved her oncologist too. He was a tall, gentle, courtly, handsome British man about 10 years her senior. We would tease her that she had a crush on him. She did, a little. He was her caregiver, advocate, counselor, all of that and more, for 20 years. I think of him every now and then and of her every day.

    Thank you for your writing. Sending good wishes and positive vibes your way.

    Liked by 3 people

  3. Nina:
    If you have not read it yet I suggest that you read the book Being Mortal by Atul Gawande — especially the chapter about his father’s spinal cancer treatment. You are a talented writer. As an atheist jew sometimes I envy the people who can believe. Life is easier for them when encountering har
    sh realities when really bad things happen to really good people.

    Liked by 5 people

  4. I’m envious of your ability to write so eloquently about your life, your joys, your pain, your loves, and the mundane moments. Forget making memories – you create pages and pages of tangible evidence of love. I want that for my sons too.

    Liked by 3 people

  5. I just read your essay in Modern Love, and tracked you down to leave this comment. You are an extraordinary person and writer — your kids and husband are lucky. May God put his/her arms around you and give you a big hug.

    Liked by 3 people

  6. Nina,

    Just read your NYT article about the couch. What a plucky duck you are. I was crying as much as laughing, though not necessarily at what you would expect. I have known your couch angst and without minimizing your health issues, I also know that humor sometimes is the best way to get through the unthinkable. I wish I could spend an afternoon with you. You sound like a simply delicious person.

    P.S. You can never go wrong with leather.

    Liked by 3 people

  7. How beautifully you write. I loved the names your boys got at camp….Foxtrot and Platypus. I stumbled across your blog today as I logged on to write something. Thank you for sharing your journey in such a open manner. I wish you all the very best for strength as you travel. I shall keep you in my mind and I pray that the doctors are able to return your health. xxxx

    Liked by 4 people

  8. Nina, my father was recently diagnosed with liver cancer. As my mother and I sat in the commons area of the medical center during his first treatment and people-watched (one of my favorite watchings), it struck me that every individual moving by has his or her own story that few know. Thanks for sharing yours.

    Liked by 3 people

  9. Nina, my hat is off to you. Your faith is incomprehensible, yet misguided. There is a Dr. Burzynski in Houston, Texas.

    If I were in your shoes, I would focus my attention and faith in his direction. You owe it to yourself to check him out. His website address is

    My thoughts and prayers are with you and your family. I’m sad to say that we here in America are confronted by two illnesses: 1) the illness itself; 2) the money-grubber “doctors” who will stoop to anything to get what and where they want to go, including either the immediate demise of their patients, or a slow, agonizing and debilitating death.

    God bless…

    Bill Ernstberger

    Liked by 2 people

  10. I love your story. It is sad yet stunning and its a great post. But maybe you could show some pictures that way some people could know what environment the children are going into? Thanks!

    Liked by 2 people

  11. Beautifully written. Having gone thru immunotherapy with my sister here in central California it is available as non trial. The issue is whether insurance pays for it since it is so extremely priced. I would urge you (in a kinder way than the other gentleman) to check into alternative and functional medicine- far less toxic than traditional chemo and some immunos with wildly surprising cure rates. Ty Bolinger is a great resource to Google. He has a new live symposium about on Oct 14-16 that you can watch free online if you register. Google that. And bless you and your sweet boys, cancer is a hard road for all. My arms are hugging you all so tight.

    Liked by 2 people

  12. I have lost many family members and friends to cancer, and have some who are fighting the battle now. You are courageous and generous to grant this window into the treasured and private moments of your life. I wish everyone suffering with this cursed disease could express themselves so eloquently. Thanks for your gift. Love and light to your beautiful soul!

    Liked by 3 people

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