This One Is Rough

"This may be harsh, but living with my diagnosis has taught me that what you have is THIS. Right now. This time IS your time. Don’t wish it away. What you have now might BE the good days. So enjoy what you can of THIS."

                                                                                                -Tori Tomalia

Tori Tomalia was one of the first people I met who, like me, had been diagnosed with ROS1+ lung cancer. Well, to be honest, we never actually "met" in person, but the first time I sat down and Googled "cure for stage IV lung cancer," a link to her blog turned up just a short scroll down a page full of links to prognoses of doom. I read what the medical experts suggested about my disease and tried hard to get my mind around terms like "disease progression" and "morbidity." Things looked pretty grim.

And then there was Tori's blog, A Li'l Lytnin' Strikes Lung Cancer: Living, Loving, and Momming It Up with Stage IV Lung Cancer. It chronicled her life through, at the time, five (yes FIVE!) years of momming it up with a Stage IV diagnosis, but also reached back into earlier years, when her blog had a different name and told the story of her travels, falling in love, marrying, the births of her children, and life with her husband and three kids. 

The blog was funny, forthright, spirited, and hopeful. Her tone was so personable and engaging; it invited you in. Somehow, she could tell a harrowing story about living with cancer in a way that could make a reader laugh, or at least chuckle. Tori, it turns out, was a comedian. For real. AFTER her "terminal" cancer diagnosis, she and her husband, Jason, opened a brewery/comedy club in Ann Arbor, called Pointless Brewery & Theatre, where they made beer and made people laugh. They also ran classes and workshops in comedy and improv performance.

And she lived for eight years with a ROS1 diagnosis, surviving from clinical trial to clinical trial, treatment to treatment, as many of us do. She passed away this week.

In addition to founding a brewery/comedy club with Jason, Tori was a founding member of the patient advocacy group The ROS1ders, which supports patients and caregivers affected by this rare cancer, advocating for research, access to clinical trials, and building a community of patients, caregivers, clinicians, and researchers around the globe. I am grateful for this group every single day.

To live with a metastatic cancer diagnosis and to take up with a community of others who share that diagnosis, even an online community, means, inevitably, despite all the good things that community brings you, you'll be confronted with loss. Like lots of it. People with metastatic cancer live longer than they used to, sometimes, thanks to advances in treatment. And we are ever hopeful that the science will outpace the disease. But still, we run out of time.

I didn't know Tori. Not really. I'd never met her, except in Zoom meetings. But even without meeting her, it was easy to know that she was one of the really really good humans on the planet. She made the world better just by being in it. I miss her already.

Mayonnaise

I FaceTimed recently with a friend who has suffered from low vision all her life. It wasn't until she was a middle-aged adult that a doctor finally declared her legally blind, though she probably could have qualified much earlier. Up until very recently, with the use of adaptive technology, she could see super-enlarged type on the computer, make her own meals, and even do a bit of quilting. Though she hasn't been able to drive in years, she's been able to live relatively independently with some help from part-time caregivers and delivery services. That changed a few weeks ago when an ocular migraine further clouded her already shaky vision. 

She told me it feels like someone suddenly put mayonnaise over what was left of her sight. Now the light gets in through a white translucence, and there are shapes, shadows, things in motion, but when it comes right down to it she can't see. She just can't see. And she lives alone. It's terrifying.

My friend is seeking treatment, but appointment wait-times are long, and she has to arrange for transportation, which is not so easy in the rural/suburban community where she lives. She can't just call Uber or even a taxi service, and she hasn't the means, nor the desire to move to a place where such things are ubiquitous. Even if she could summon a car, her limited, fixed income would make using such services prohibitive, and the free services available to people with disability tend to be erratic in their scheduling.

Oh, and there's a pandemic, which makes all of that more complicated and worse. Of course.

So we talk about mayonnaise and make offensive blind jokes and cancer jokes to keep our spirits up. We also reminisce about that time decades ago, in school, when we thought we could do or be anything we wanted, which for us meant having lifelong careers in academe, enormous private libraries in our houses, and scholarly projects that required sabbaticals in the south of France. Instead, we're adorably chunky, late-middle-aged, learned women living creatively on slender means and making awful jokes about awful situations over a video-link like dystopic Jetsons.

I say to her "My brain feels like it's been mayonnaised." Every thought is slippery and cloudy. Cancer people call it chemo-brain, or brain fog, but I like my friend's simile better—mayonnaise being in places it shouldn't ever go. I have never liked mayonnaise, never willingly put it on sandwiches, won't eat salads made with it, etc. I even skipped the mayonnaise in France, where I've visited twice, and where, I'm told, it's particularly good.

So that's my advice. Skip the mayonnaise. Definitely don't put it in your eyes or your brains if you can help it. And don't get cancer or blindness. Or coronavirus. Stay as well as you are able, lovelies. I like being here with you, even in a pandemic.