I Have Lynch Syndrome

Most people have heard of the BRCA genetic mutations that predisposes its owners to breast and ovarian cancers, especially after Angelina Jolie disclosed she carried the gene in 2013.

Fewer people are familiar with Lynch Syndrome, which causes a predisposition to a number of cancers — primarily in the abdominal region — and is comprised of mutations to a handful of genes that mostly start with or contain the letter “M”, like MLH1, MSH2, MSH6, as well as PMS2 and EPCAM. These genes are involved in a process called mismatch repair. According to the Dana Farber Cancer Institute, they “act like spellcheckers to find and correct the “typos” made in the gene copying process.” When the typos don’t get fixed, the mistakes can replicate and accumulate more and over time this can cause cancer.

Growing up, my father was diagnosed with cancer several times, and we just assumed he was very unlucky. But then, in 2003, I was diagnosed with colon cancer at an unexpectedly early age. After a surgery removing half of my colon, the doctors sent my tumor to a genetics lab where they discovered a MSH2 mutation. Then they tested my father’s blood, and found the same mutation. That’s when we learned we both had “hereditary non-polyposis colorectal cancer (HNPCC),” also known as Lynch Syndrome. Depending on which genes are affected, people with Lynch Syndrome have a higher risk than the general population of getting certain cancers:

General populationLynch syndrome (MSH2)
Colorectal4.20%33-52%
Endometrial3.10%21-57%
Ovarian1.30%8-38%
Gastric0.90%0.2-9%
Bladder2.40%4.4-12.8%
Biliary tract0.20%Up to 1.7%
Urothelial<1%2.2-28%
Small bowel0.30%1.1-10%
Brain/CNS0.60%2.5-7.7%
These are statistics for MSH2, which pertains to me. I took it from this more complete chart by the Jackson Laboratory.

After my first diagnosis, I made lifestyle changes to improve the risk factors that I could control. I stopped drinking alcohol, eliminated or cut down on meat and sugar while increasing my vegetable intake, re-committed to yoga and meditated to keep my cortisol levels down. Maintaining this lifestyle while returning to grad school wasn’t always easy, especially in Los Angeles, where socializing and networking is “part of the job.” When I graduated from Screenwriting school in 2011, I got an offer to be a writers PA on a television show where I’d been interning—a dream scenario, except the job didn’t have health insurance, and pre-ACA, there was no individual coverage for someone with my history. It was hard to pass up that job, and I’ve often wondered how different my career might be now if I had been able to take it…

But I made the practical choice, and, as it happened, having health insurance soon came in handy. In 2012 I was diagnosed with endometrial cancer and my uterus was removed.

Then, after was nine fairly peaceful years, last October (2021), a scan revealed colon cancer. Again.
It felt kind of like getting struck by lightening twice. What are the chances? Turns out, with Lynch Syndrome, they’re pretty high.

Estimates say that about a million people in the United States have Lynch, but that 95% of them don’t know their status. If you have questions about Lynch Syndrome, you can check out the websites of advocacy groups like Lynch Syndrome International, AliveAndKickn.org and FORCE. They are a good source of information as well as encouragement. Many people with Lynch live long and full lives!

(This is a kind of nuts-and-bolts rundown. If you’d like to read a longer essay with more personal and philosophical thoughts, you can check out something I wrote for The Colorado Review awhile back called “Luck, Statistics, Magic.”)

2021 Year End Recap

Things to be grateful for this (and every!) year: For the warm snoring bodies of the people we love next to us in the bed. For daily walks past people’s yards landscaped with strange desert flowers. For breathing clean air. For rainy days and cars that run. For creative impulses, and the time and ability to pursue them. For family, friends, and random moments of beauty shared with strangers. For sudden trips to far-off places. For the continuation of life. 

2021 in a Nutshell: 

⬆ B got to see old friends in Indiana.

⬆ We both got to see friends again in Los Angeles.

⬆ B took a trip to Argentina – it’s on a whole other CONTINENT, ya’ll!

⬇Paul had his gall bladder removed – it was stressful…

⬆ …but now he can eat Panda Express orange-flavored chicken again.

⬇Some household-maintenance issues that were not fun or short or cheap.

⬆B joined some writing groups and loved having an online writing community. 

⬆Paul was happy to go back to live board game groups, and recordings for his podcast group

⬆B achieved a 265-day Duolingo streak. (Como se llama at me, baby, I’m ready!)

⬆Paul and B got our first produced TV writing credit.  

⬆B won a prize for a short story, optioned a show, and got a TV agent. 

Americanish, which Paul produced, won prizes at almost every festival where they played! 

⬇Nobody sold a script or got a job in a writers room.

⬇ Some health stuff that we’ll talk about in a minute… 

But first,

Some Stuff We’ll Do in 2022!

Barrington:  

  • Exploring UX Writing and Content Design as a career path. No idea what this is? Doesn’t matter, just say “something with computers.”  The exciting thing for me is that the more I research, the more I’m finding that the many jobs and side-hustles I’ve juggled over the years have all been training me for a job in this field. Seriously, I might be The Karate Kid of UX Writing! 
  • I’m also committed to some Kondo-level decluttering this year, in my physical space and beyond. 

Paul: 

  • After threatening to start his own podcast for most of 2021, he says that 2022 could be the year he pulls the trigger!  Two potential titles are: Five Ticket Ride (there’s a story behind this one) and Paul Saves the World… featuring Patrick. (I’m assuming his friend Patrick is his partner in crime on this.) 
  • He’s keeping the faith for his various film projects breaking through, looking forward to the pandemic actually being over, visiting friends, traveling and, of course, winning the lottery.

Dumb Health Stuff I Don’t Want To Write

No one knows every hurdle a new year might bring, but in our case, the first one is already up to bat.  In October, I received a cancer diagnosis. It’s colon cancer, like once before in the past, but smaller. Really, so much smaller. It isn’t life-threatening, but there are varied opinions regarding what amount of surgical intervention will be necessary to remove it.  If you know me, you know that in addition to jumping through the traditional medical hoops of doctors, second opinions, etc., I’m also doing all the things like veggie juice, supplements, no-sugar, meditation, etc.

I am gratefully accepting prayers, healing thoughts, good vibes and any and all assorted types of woo-woo energy. If you need a mantra or something to manifest, try the phrase: stage R-zero.

If that’s too short, you can add: and Paul wins the lottery!  (This letter has been edited by Paul.)

Quick Wrap Up

That about wraps up 2021. Despite a few things that didn’t turn out as awesome as we hoped, we really did have a lot of fun times this year. Here’s a picture to show you that we’re still standing:

Proof of Life!

Sending lots of love and affection and our very best wishes for 2022,

Barrington and Paul

B’s 2020 Look Back (Silver Linings Edition)

View from Baldwin Hills Overlook, December 25, 2020.

Wait… Did I send a 2019 update? I did not. I started (in my head at least), but so much was happening at the end of 2019 that I put it off, figuring I’d finish it once everything got “back to normal” in 2020.

To which 2020 said:

😂😂😂😂 HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA 😂😂😂😂

While I didn’t finish an update letter in 2019 because life was frenetic, the true-true is that even before the frenzy hit the fan, I was having trouble figuring out what to write. Though I’m a fan of “honest” holiday letters, no one needs a depressing whine-fest, and coming to the end of 2019, I was more than disheartened. Events and circumstances during the year had led to a loss of faith in people, in the universe and in myself. 

What were these events that led to my year-end funk? I don’t remember. Looking back, it’s all a blur. So, I guess a silver lining of 2020 is that it has pretty much obliterated my recall of  2019.

Which brings me to the inspiration for this update: Silver Linings. Winning out over topics like Year-End Podcast Lists, Great Books and TV, and Even More About Writing, I offer a small sampler platter of bright spots and blessings.*

JANUARY: Paul and I got the opportunity to go to Gainesville, Florida and teach film classes for the spring semester at University of Florida! Two days before leaving Los Angeles, our Florida housing plans fell through (thanks again, 2019!). When we arrived, Paul’s friend, Iman, and her family opened their home to us and hosted us for a month, sharing rides and meals and stories and downtime in front of the TV. I think my favorite form of getting to know people better is simply co-existing in their environment, which made this detour in our plans a gift.

MARCH / APRIL: In early March, the pandemic lockdowns began. While the best timing for a pandemic would have been never, the second best timing, for me, was when it happened. After a precarious 2019, a semester-long gig felt stable, and teaching 3 three-hour classes a week offered structure. I had the distractions of deadlines aplenty, learning  new technologies, and students who were depending on me.  All of this meant my existential angst was supplanted by a more fun “race to the finish line of this project” anxiety.  At the same time, friends Matt and Dmitry started a War and Peace Covid-19 challenge, with a goal of reading 50 pages every day. With the gyms closed, I listened to War and Peace on audiobook as I went on walks in the mornings and evenings. I didn’t always meet the page quota, but it was a simple pleasure and  a perfect distraction– and now I’ve read War and Peace

B and Paul outside the Publix in April, wearing 1st-gen, DIY masks made from paper towels and rubber bands.

MAY/ JUNE: We’d been back in Los Angeles a few weeks when the killing of George Floyd and other injustices prompted the Black Lives Matter protests. During this time, a friend, Beto, proposed an “anti-racist bookclub.” He and his friends did the work of planning,  organizing and facilitating a group with clear intentions and dynamics. Over the last six months, I’ve benefited from their insightful company while reading the works of bell hooks, Audre Lorde, James Baldwin, Ibram Kendi and others. In parallel, old friends Kendall and Annie nudged me to join their book club just in time to embark on Howard Zinn’s 800-page A People’s History of the United States.  Throughout my life, especially during pivotal times, certain books have helped me, prepared me, gifted me with new perspectives and a clearer vision of the world — and this year’s reading experience falls in that category.  

SEPTEMBER  The fires in California turned the skies to smoky haze, and then orange. For days we avoided going outdoors and felt unsafe breathing the air even inside.  We felt fortunate that our neighborhood was never in jeopardy, just as people everywhere feel lucky when disasters seem to be happening elsewhere. The other silver lining is that the fires added urgency to my growing feeling that, in the face of our social and environmental issues, it is not enough for me to simply be unobjectionable. Writing postcards, and phone banking for democratic candidates were steps too long delayed, but ones that have started me down a path of greater engagement. I owe thanks to folks (Megan, Caitlyn, Tracy) who made themselves vocal and visible on social media, offering instructions and opportunities that made it easier for people like me to become more a part of our political process. 

NOVEMBER / DECEMBER Amidst health concerns for the world, these two months were touched by family health concerns. November began with my mother’s knee replacement, ended with news my uncle had suffered a stroke, and in between, Paul experienced a painful bout of pancreatitis that was traced to some gallstones. Though travel to Indiana and then Texas during a pandemic had not been part of our plans, I appreciated more than ever the opportunity to be with loved ones, under any circumstances, and am happy and relieved to report that everyone is on the road to recovery.

And these most recent events have reminded me how, even with the world’s myriad problems, these are — as Paul Simon sings — days of miracle and wonder. Knees are replaced, helicopters airlift you from tiny towns in Texas, machines scan inside you and tell you what’s wrong, information and our own images zip and Zoom around the world in an instant— and scientists create vaccines that can help our cells fight (electron) microscopic viruses.

I don’t want to place too great a pressure on 2021 — January 1st will not be the day we arrive at the light at the end of the tunnel. But I do think we can see it from here, and that we have the opportunity to make the tunnel itself a little brighter and easier to travel with the light we carry with us. So, with lots of love and good wishes, here’s to a —

Happy 2021!

* A few disclaimers: 1) The overarching fact that we are healthy, we are housed, we are together… those alone mean it has been a great year. 2) This list leaves out so many moments and people, of course. My thank you list would be longer than at any Oscars speech. 3) Several of my silver linings exist against dark clouds like pandemic, systemic racism, fires that have caused countless people to suffer. I don’t know what to do with that fact, except to acknowledge it, and pray and work for an end to those clouds.

I Made A Short Film

I made a very short film — under three minutes. THE CHASE stars my niece and nephew, who have both grown much bigger now than when this was shot. I wanted to learn a particular editing program, but my computer wasn’t robust enough for the task, and then other work moved to the front burner, so took it a year before time and resources finally aligned… but I’m happy with the result:

The credits go by fast, so I’ll call attention to the fact that even on a three-minute film, it works better if you have a village. My friend Christine was behind the camera, while another friend, Caroline kept things moving doing an A.D. / producer duties. My mom handled craft service, Paul acted as consultant and “spackle.” And, of course, the whole enterprise was elevated by the great original music. I’m very lucky to be able to use my sibling card to draft Greg Gordon Smith to compose and perform.

2018 Year End Letter

The day before New Year’s Eve I suffered a case of food-poisoning, with all the fun that entails. Appropriately, I ended 2018 feeling a little beaten up and drained! But the first day of 2019 is the sigh after the storm. The sun came out this morning, and — for today at least — nothing could taste more delicious than sparkling water and saltines! I think if there were a theme for 2018, it would be “perspective.”

(The theme for 2019, I have decided in advance, will be “pictures” since I am looking through my photos from this year and realizing I don’t have a single one with both Paul and me in the frame. We’ll use this as a stand-in:)

couple holding hands

Paul and I still live in the top half of a Spanish duplex in Los Angeles. In the spring, we were sad (though happy for her) when our awesome housemate, Julie, moved to Brooklyn with her boyfriend.  We lucked out when another friend, Sue, was in the market for a place. She’s a photographer, a former stand-up comic and has similar standards for cleanliness to ours so we’re getting along great!

In 2017, Paul  helped out his friend from film school, Iman, with her first feature, a comedy about three young Muslim women balancing love, career ambitions and culture in the Big Apple. In 2018 he became an official producer, logging many hours on the phone and in the editing room (i.e. the editor’s bedroom … it’s an independent film!)

For me, 2018 was a “leap-of-faith” year.

leaping from cliff

I purposefully took no steady teaching or admin-ing in order to push forward my screenwriting career ambition. I developed several projects and a couple came close to the finish line of being sold — but despite hopes and promises,  and many people claiming to be “excited,” it was not meant to be… in 2018 at least!

On the bright side, because I can write while traveling, I was able to take a longer-than-usual trip back to Indiana and New York where it was lovely to see family and old friends. On the flight to New York I also read a novel by friend and talented writer, Eric Sasson, called Admissions, and couldn’t put it down. I asked Eric if I could option the rights and he said yes! This was my first time optioning another writer’s work – it felt good to find and validate, even in a small way, another writer’s talents and efforts!

I took a video editing class and used my new, rudimentary skills to complete a three-minute film!  (It stars my niece and nephew and had a very exclusive “cast and crew” screening at my sister’s home on Christmas Day.)

Day-to-day, the freedom /obligation to wake up and write into the afternoon was really satisfying. So was making it to the gym more often. I always wondered, if my schedule were more flexible, I would really make more time for the gym? I was happy to find the answer is yes! exericise-stick-figure.jpg

I saw some great plays, and Paul and I both saw many movies. For a few golden months our MoviePass subscriptions provided a non-stop film festival at the nearby Landmark theatre.

Almost-free movies, classes at the gym, extra hours at my laptop – as well as sunny days, rainy days, and days when you just wake up feeling good – more and more, I am aware of how these are gifts. Maybe because 2018 has been so full of perspective-giving moments. I don’t think I’ve ever experienced a year when so many friends posted about losing their beloved pets. I’m regularly brought to tears by friends grieving the loss of a parent or dealing with  grave illnesses of spouses and children with a bravery, perseverance and poetry that stuns me.

In December, my mom and I traveled through San Francisco to Eureka, California, seeing old friends, family and Redwood trees along the way. The trip was over my birthday weekend, near the year’s end, and we had several hours to drive while looking at fields and listening to the Dirty John podcast. Basically the perfect conditions for woolgathering and taking stock– and, if one isn’t careful, lapsing into wondering why the universe hasn’t rewarded ones efforts in a way that’s “fair.”

This sense of why unfairness? might have been lingering in the back of my mind the morning we left Eureka. Mom and I were eating our free continental breakfast in the motel lobby when a mother came in with her four children under the age of ten. We tried not to laugh too obviously as one of the kids over-filled his cereal with milk and then carefully shuffled to the table trying (unsuccessfully) to transport the bowl without it spilling.

My mom, making conversation, asked the kids if they were “on vacation,” the six-year old girl replied, in the softest little voice, “No, we’re here because our house burnt down in Paradise.”

BAM.

Perspective.

The mother told us that she and the kids had been at the motel for weeks while their father was on the road, looking for work and a place to rebuild their lives.

(Whoa, I didn’t mean to write myself into such a serious corner here at the end. I’ll try to wrap it up. Thank goodness this wasn’t a Christmas letter!)

Any year can be a year where our life plans—our life assumptions—get thrown off track, in big ways and small. If there’s a value in it, it’s probably that it makes us grateful for whatever remains—for me, there was a lot to be grateful for this year: health, the well-being of those close to me, people who remain resolutely kind and thoughtful in the face of the growing pressures in the world to be otherwise, friends, laughter, generosity, Skype, clean air, saltine crackers and sparkling water. And if you are reading this, you!

stock-vector-cartoon-stick-man-drawing-conceptual-illustration-of-businessman-climbing-mountain-concept-of-784718656Here’s to whatever you are grateful for, and whatever mountains you have to climb in 2019!

Love,

Barrington and Paul