Exposed

I.

Even though I know that reading the news is bad for my mental health, I still open The New York Times every morning. After clicking on the Coronavirus Update I immediately scan the U.S. maps, and if I see Vermont in the “Where new cases are decreasing” section, I softly, silently, clap. Only then do I move on to the non-corona stories.

Recently, I skimmed through an article about Bayer agreeing to pay $10 billion to the more than 95,000 people who developed cancer after being exposed to Roundup, a popular weedkiller produced by Monsanto (Bayer purchased the company in 2018). I’d been following the story on and off and was glad to see that those sick farm workers were finally going to be compensated.

I was about to close the tab and go read about the rising cost of cheese, when it dawned on me: Roundup causes non-Hodgkin’s Lymphoma.

I have that kind of cancer.

II.

The first time I met Leslie, my radiation oncologist at Dartmouth-Hitchcock, she was wearing a cute brown tunic dress and biker-type brown leather boots. I told her I liked her outfit and she said she liked my beaded bracelet. I could tell we were going to get along like friends who haven’t had to quarantine together. After some preliminary “blah blah your cancer blah blah electron radiation blah blah” discussion, she walked me over to a small room for my “simulation.” I was told to lie on my back on the CT scan table and hold still while a very handsome technician named Damien (really? Did his parents not watch The Omen?) draped a warm wet sheet of plastic mesh over my face. After what seemed like an hour (I think it was more like 15 minutes), I turned onto my stomach so that Damien could repeat the process. This video will make clear what happened (btw: Damien did not speak with a British accent and that guy at the end is far too jovial for my taste):

With the completed mask now screwed into place, they conveyed me in and out of a CT scan machine a few million times. The resultant images were to help Leslie and her team of purportedly intelligent physicists design my treatment.

Before saying goodbye, my good friend Leslie nonchalantly slid a consent form in front of me. On it were listed some side-effects that might ensue, including:

1. hair loss;
2. extreme tiredness;
3. the possibility of getting future cancers.

“I’m not signing this,” I said, looking at her. Her pager had just buzzed and she was reading it.

“Why not?” she replied. I could tell our friendship was about to be tested.

“You said I wouldn’t lose my hair.”

She sighed. “In all likelihood, with such a low dose of radiation, you won’t, but you still need to sign it.”

I hemmed. She glanced impatiently down at her hip, which soon buzzed again.

I hawed. She smiled at me. “I have to go.”

I signed. 

“I’ll see you back here in two weeks,” she said before rushing out the door.

III.

Dear Insert Lawyer’s Name Here,

Between 2008 and 2010 I lived in a co-housing community on 125 acres in Charlotte, Vermont. To the north of the community there was a dairy farm with accompanying corn fields. To the south, more corn fields. A strawberry farm bordered us on the east side. At the time I had a small child and was worried about her exposure to toxins so I reached out to both farmers and asked what exactly was spewing out of their tractor sprayers and crop dusters buzzing over our house. They were defensive but forthcoming: they used glyphosate (the herbicide in Roundup).  

In January of this year I was diagnosed with Cutaneous B-cell Follicular Lymphoma.

I have no idea if there is enough evidence to prove causation, but if so, let me know if you are interested in pursuing this.

Yours truly,

IV.

Leslie walked into the exam room. “The machine is ready to go so we should make this fast,” she said snapping open her laptop.

I was supposed to check in and proceed directly to the radiation treatment room, but a few days before my appointment I’d emailed my ever-growing list of questions and concerns to Leslie, and she’d generously agreed to a quick visit.

“The team wanted to radiate down through this area,” she said pointing to an image on the screen that might well have been a map of Turkey. “But I told them to redesign the plan so it’s brain-sparing.”

I blinked. “They wanted to go deep enough to zap my brain? Why would they choose to do that if they don’t have to?”

“What can I tell you? They’re just nerds who look at computers. They don’t think in human terms.”

I pictured a bunch of frat boys with beers in their hands maneuvering around my CT scan pics like they were shooting for the next level in Grand Theft Auto. “Let’s blast these mofo tumors, dude!”

“Huh,” I said noticing on the screen a large red band crossing the entire top of my head like a bloody caul. “Is all that red where the radiation is going? I thought you were just directing the beams at the individual tumors.”

“No, we changed our minds,” she said to the person who hates a last-minute change of plans. “They’re too diffuse and there might be more under the skin that we can’t see.”

I fell back into the chair and started to tear up. I touched my scalp, imagining nascent tumors budding through it, like baby goat horns. “Then you’re radiating my whole head?” I asked my ex-friend Leslie.

She nodded. “Yeah. It makes the most sense.” She looked at her watch and stood up. “Let’s go before we lose the room.”

The large “room” which held the enormous MACHINE was freezing. The technicians—a surly man named Trevor and a meek woman named Liz—told me to lie face-down on the table and make myself as comfortable as possible. They affixed the heretofore mentioned mask onto my head, making sure the nose holes were positioned properly—I would need to breath—before tightening the bolts; thus rendering me completely immobile.

From behind the safety glass in the other room Trevor spoke into a microphone, warning me each time something new was going to happen, like, “We’re taking an x-ray now just to check our placement,” or “We’re raising you up a little more,” or “Is this music okay or do you want something different?”

I could only answer with a thumbs up, which I did, even though the very bad 80’s music was anything but relaxing.

I sensed the table rising then lowering then twisting around. I saw flashes of light through my closed eyes. I breathed—in for 5, out for 5. I pretended I was getting a massage and that my face was resting through that soft hole at the end of a massage table. I felt the masseuse’s hands caressing my shoulders, my tense back, my—and then Trevor said, “Okay, here we go. It’ll be about 30 seconds,” and I braced for it, having no idea what I was actually bracing for, but suddenly there was a light so bright it was as if an atomic bomb had exploded before my eyes.

And then it was done and someone lowered the table and someone else unbolted me and someone else helped me off the table and someone else handed me my purse and said, “See you back here tomorrow for round 2!”

V.

Low likelihoods aside, my hair began falling out two weeks later. It wasn’t like what happens to people who get chemo and become totally bald: only the follicles in the irradiated parts of my scalp died. Picture Christian Bale in “American Hustle.”

Since Blue Cross covers the cost, I figured I’d splurge on a deluxe wig prosthetic hairpiece, but after it arrived and I tried it on, I cried. Sure, it was luxurious and it hid my exposed pate (as well as my new gray hairs), but the clips tugged on the few remaining hairs I had and…honestly, my head couldn’t stomach it.

I watched 3,478 videos—most of them made by stunning Muslim women—that demonstrated nifty ways to tie a turban with a scarf. I learned how to make an easy head covering out of a t-shirt.

This is the wig

A few friends came to my aid with some fashionable fixes: Lori sent me a cool summer-colored Boho Bandeau. Marcella bought me a silky flowered scarf and a very chic fedora. Karin mailed—all the way from Australia—an Aboriginal Art sun hat.

To be sure, losing my hair has depressed the heck out of me. I feel as if my feminine side got ghosted. I avoid looking at my reflection in the mirror. I don’t go out and see people, but hey—I wouldn’t anyway since we’re in the midst of a pandemic.

Timing is everything, right?

VI.

All four law firms I contacted told me that unless I actually used Roundup, there was no way to prove causation. Being that I’m not a litigiously-inclined person, I wasn’t too disappointed. I mean, I wasn’t hoping to get money. I was just hoping to find some answers.

VII.

“Oh yes, this looks beautiful,” Joi, my dermatologist, pronounced this past Monday as she ran her hand across my now-smooth skull. “Excellent results.”

“Does this mean I’m cured?” I said, quickly retying my scarf.

She frowned. “No. There’s still a fifty percent chance you’ll get more tumors, but probably not in the same place.”

“Hunh.” I glanced over at Kevin, my oncologist who sat typing on his laptop. “If they do come back I’m guessing you’re going to suggest I ‘mow the lawn,’” I said, quoting him with a smirk. Back when we’d first met, Kevin had strongly advised I get four infusions of a monoclonal antibody drug. He felt it would clear my entire system of the cancer: it would “mow the lawn.” Given the very scary side effects, I had adamantly refused.

He nodded. “Right now you’re fine, but if it comes back it could be a more serious form of lymphoma. “And,” he said, adding his pièce de résistance, “Rituximab won’t make your hair fall out.”

As if reading my mind, Joi put her hand on my shoulder and said, “Your hair will grow back, Lisa. It’ll take a few months, but I did see some tiny ones just now.”

I shrugged, feeling only slightly mollified. I knew it would be a while before the tumors returned, if ever. I knew that my cancer was an indolent, not-so-deadly sort. I knew I had to take what good I’d been offered and be grateful. Okay, so I lost my hair, but, as Loy pointed out, “It’s way better than losing your life.”

END

24 thoughts on “Exposed

  1. Just read this again – on my computer… The first time was on my phone which just doesn’t do it justice, and maybe I lost some of the flow. This time, I’m not feeling sad for you but am awe-ing at how interesting and readable you’re cancer journey has been. This feels like your next book, and I’m pretty sure it will have a happy ending. xo

    Liked by 1 person

  2. First chance I had to finally read this, I apologize for not doing sooner.
    Your amazing and strong and I love and miss you!
    Good thing I waited till I was home to read this. 🙂

    Liked by 1 person

  3. WOW!! This is huge! Thank you so much for writing and sharing this. This should be printed in the cancer journal! Your words bring this up close and so very personal. Thank you!!!!

    Liked by 1 person

  4. LisaLisa,
    Your gift, your strength, your beauty, your spirit will not be defeated by some crappy illness. Hair is overrated. Love your family, love your life, and please keep sharing your story.
    xo

    Liked by 1 person

  5. Lisa,

    Thank you for humanizing this experience, and for drawing us in. Many of us will at some point no doubt go through a similar medical ordeal, if we haven’t already. The intimacy of your writing is a gift.

    Jackie

    Liked by 1 person

  6. Once again you brought us with you– with humor and all our senses — on the journey you’re on. I am sorry you have to be on this particular journey, though. But I agree with Loy. Beautifully said, like beautiful you, with our without those brown tresses.

    Liked by 1 person

  7. What they all say above, and more. Your writing is exceptional. Your words, your flow, just you being you. The fact you can share your feelings about something so uncomfortable makes you such a hero. I would rather hide. But you don’t hide under your gorgeous wig, you put yourself out there, exposed. You are truly something profound, Lisa.

    Liked by 1 person

    • I am not sure if “thank you” is enough. It should be, but I fear it is not, given the joy you have just given me. Thank you, EF. Please stop hiding, btw. You are a phenomenal storyteller. Go: tell more stories.

      Like

  8. I have so missed feeling close. Reading this brings me closer to you. Thank you.

    You are so strong, so funny, such a fixture in my heart.

    XO

    Sent from my iPhone

    >

    Liked by 1 person

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