Category: Cancer

First Try at Removing the Colon Cancer

(Note: If you notice some of these posts have more links and technical jargon than usual, it’s because I’ve become incredibly grateful to all the people (like Jim Sease, who I’ll reference below) who have shared their stories and information for people like me, and I want to pay it forward. I hope that if someone in my situation stumbles on this post during a late-night internet search, they might find the word or link they need to help them on their journey.)

Back in October, when my gastroenterologist at Kaiser told me I needed to have the rest of my colon surgically removed, in order to remove a small cancerous polyp, it sounded crazy to me. The polyp was less than two centimeters big. The problem, she said, was that it couldn’t be removed like a normal polyp because it had grown into the scar tissue from a previous troublesome polyp. The scar tissue was so rigid, it would be impossible to lift the polyp from it.

Still, the idea of removing my entire colon seemed extreme. Right? Doesn’t it sound extreme? If a polyp is only couple of centimeters, can’t you just take an inch or two of colon and call it a day? After that, I met with a Kaiser surgeon, and she explained that it wasn’t that simple, because when you cut out part of a colon, you can only reattach it at a point where there’s a good enough blood supply to keep everything working, so, at minimum she’d have to remove all the colon up to the next good blood supply.

I think that just the biggest arteries coming off that central one in this picture are considered “good” blood supplies.

Okay, I could see the logic. But, even as we began to schedule the surgery, I wondered, how could this be the only answer? Then, one late night on the internet, I came across a blog post by Jim Sease called Removing a Large Flat Colon Polyp by EMR without Surgery in which he gives a very generous and detailed report of having a five centimeter polyp removed by an alternative procedure called EMR. Like me, his doctors had recommended removing some of his colon, and as I was doing, he had searched for — and found — an alternative.

From reading his article, I gained enough knowledge and vocabulary to start investigating the possibility of either EMR (Endoscopic Mucosal Resection) or a related procedure called ESD (Endoscopic Mucosal Dissection). Although my doctors at Kaiser didn’t feel I was a good candidate for these, I found a doctor at UCLA who specializes in these procedures along with a newer one called EFTR (Endoscopic Full Thickness Resection) and was willing to take a second look. There were a number of science-y things to consider, that are outlined in this video:

To do the procedure at UCLA, I had to change my health insurance provider during the open enrollment period and wait for that to take effect in January. Then I had to navigate through the new system to get referred to the specialist and then wait for an available date. I was lucky with a cancellation and got a date on January 27th.

On January 26th, I stopped eating and drank my too-familiar bowel-cleaning prep solution, and early the next morning, arrived UCLA. My doctor explained the three things that might happen: 1) He could remove the lesion, and if it was shallow, then I would heal and that would be it. Or, 2) he might remove the lesion, but the pathology would show the cancer was deep, and later I would still need to get a surgery. Finally, 3) he might look and decide I wasn’t a good candidate at all, for some of the reasons outlined in the video.

I was hoping, of course, for the prize behind door number one. I was bracing myself for door number two. Because he had (I hoped) looked at the images taken by my gastroenterologist, I didn’t think he’d pick door number three…

But he did. When I woke up in the recovery room, the doctor visited to let us know that he’d looked, and didn’t think my my case would be helped by any of his techniques. It was a little too big (he measured it at three centimeters) and had concave features. All he’d done was take a few more pictures and another biopsy. In the end, he agreed with my doctors at Kaiser, that surgery was going to be the route for me.

No lie, this news was disappointing. I went home and got straight into bed — both because I’d been up much of the night doing the prep, and because, in general this is my favorite way to deal with disappointing news. After a long nap, I woke up and went for a walk outside. The weather was very nice.

Did I jump through a lot of hoops for nothing? Maybe? But, I’m someone who needs to feel like I’ve really gotten all the information before committing to something life-changing. Now that I’ve been through this, I’m feeling ready to take my next steps… which you’ll get to hear about soon!

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

Maintenance Sucks… and It’s a Privilege



Sometimes I get really disheartened because I have to do so much side-hustling while the “real job” of being a writer — the job that I’m am trained at, good at and want to do — feels like a shell game.  I keep doing the work, but the target is always moving and it never seems to pay off.

So then I get doubly irritated when, out of the blue, the equivalent of a third unpaid job falls on me. In September, a bathroom pipe in my condo sprang a leak in the middle of the night. In the morning I was on the phone with tenants, the homeowners’ association, plumbers, water mitigation experts, the insurance company and the (rightfully) very irate downstairs neighbor. And for almost two months, hours of each day was consumed by logistics, and communicating those logistics to all the relevant parties. Because of pandemic-related “supply chain issues,” every two minute visit to the Home Depot website for a part became hours of rabbit holing, scrounging and waiting, and then more hours separately explaining and apologizing for those delays to the tenant, the irate neighbor, etc. It was frustrating.

It was also what what my brother-in-law would call a “First Class Problem.”

Because someone could easily say: “Fuck you… YOU OWN A CONDO IN LOS ANGELES. I’ll take that problem off your hands.”

And that person would be right. I can feel frustrated because maintaining property, is tedious, time consuming, expensive— but I should never forget to feel grateful for the circumstance that makes the problem possible.

Which brings me to the stress and tedium of maintaining my other property — the body I live in. Specifically at this moment, the cancer. I’ve had blood draws and CT scans and doctor’s appointments where we discuss doing things to my body I don’t want to do. I have launched a routine that requires hours each week (if not each day) buying, cleaning, cutting and juicing vegetables, then cleaning the juicer and the entire kitchen which some how ends up covered in a carrot / beet blood splatter. It takes more time to meditate, and read medical journal articles on the internet. I wake up some mornings buzzing with anxiety. I may have mentioned on this blog how I get anxious packing for a trip. I worry about making decisions I’ll regret. What if I bring things I don’t need? What if I don’t bring things I need?  And that’s when I’m traveling for a week. So clearly it’s daunting to decide on treatment options that I’ll have to live with for the rest of my life.

But, weird as it seems to say, it is also still a first class problem. I live in a healthy-feeling body — which is an entirely different experience from dealing with all this from a body in pain. I’m editing this as I wait on hold to make a doctor’s appointment because I have health insurance and because my work-from-home situation allows it. My cancer was detected early because I have health care.I’m housed. I have a juicer, access to fresh food and information. And I have friends and family who want to help. I am surrounded by generosity.

The world is touching me, and I am blessed.

Health Concerns

“When you have your health, you have everything. When you do not have your health, nothing else matters at all.” (Augusten Burroughs, writer)

I don’t believe this entirely (in particular, you have to wonder if the writer had children), but I certainly understand the sentiment. The first time I had cancer, there were so many things I was trying to organize before going to the hospital, things I assumed I was coming back to as soon as the surgery was over.

Once the diagnosis came back, and turned out to be bigger and scarier than expected, I remember being amazed at how quickly all those things felt completely unimportant. Faced with the proposition of losing your health, so many things that feel important fall away with an ease you could never have imagined. Getting a hard health diagnosis is like being confronted by a big guy with a knife. When he starts chasing you at high speed, and you start running, you aren’t thinking about some report you have to turn in at work the next day.

At the same time, living with a hard health diagnosis is like running from a guy with a knife who is moving in slow motion. You have time to eat something, take a shower, and even turn in a report or two — but you can’t really forget that the guy with the knife is coming for you, that at some point you’re going to need to dodge and weave, and keep moving. It’s a different existence from people who don’t have any slow motion knife guys in their lives.

All of this is just the way my mind tries to intellectualize and metaphorize my circumstances.

Like the fact that the doctor came in after my colonoscopy last week to say she’d found a polyp that she thought looked cancerous, and that, due to some scar tissue, she’d been unable to remove it. Her proposal, even in those first moments coming out from sedation, was daunting: Remove the rest of my colon. As in all of it.

It didn’t seem much less daunting a few days later, when we had a video consult. The polyp—the cancerous polyp— is very small, but because of my genetic mutation (Lynch Syndrome), the larger surgery is recommended —I guess it’s the doctors’ way of avoiding the knife-guy — or at least slowing him almost to a stop. But it would entail some big lifestyle changes that I’m not sure I’m ready to embrace. My instinct to opt for something a little less life-changing, even if that means I need to spend more time in the future looking around corners for the knife guy. Because my mutation affects multiple organs, I feel like, knife-guy’s never going to go away completely no matter what, so maybe concentrate on quality of life over quantity.

Working through all this — organizing more scans and conversations, and making some immediate changes to my diet and meditation — has quickly become a preoccupation. Maybe because it isn’t immediately dire (I’ve managed to push any surgery to late December or January), things in my life haven’t dropped completely off my radar in terms of importance in the way that I’ve had happen in the past, but certainly they’ve become smaller blips.

One blip that is still pretty large is this: Paul is having his gall-bladder removed today. It’s supposed to be an outpatient surgery. I’ll be taking him to the hospital in about an hour. In another timeline, where my results last week were clear, this would have been the big headline news, perhaps the only topic of this blog. Indeed, we both have lots of thoughts and feelings around it —what it means in terms of lifestyle, identity, overall health — but for the moment, we’d appreciate all good thoughts just to get through the procedure with no complications.