Category: Lynch Syndrome

Updates from Limbo – Decision Made

Still traversing this expanse of time between diagnosis and colectomy surgery. It’s been about five months which which seems crazy. The length of time is partly on me — hopping providers and looking for options— and then due to crowded schedule of my surgeons.

This window of time—before the event and the after of the event—has a limbo-like quality. I’m living my day-to-day life in a completely normal way, but also I’m distracted by the waiting. I appreciate this time, because I feel good now, and I might not feel so good after. But also, there’s an element of wanting to get on with it — to get to the other side of the uncertainty about how life is going to be.

But the time has also given me time to process, and even change my mind about stuff. For instance: After much consideration, the ovaries are going to stay.

When all of this is behind me, I have no doubt that I look back at these months that have produced absolutely no screenwriting and wonder “what the hell did I do for all that time?” I will state for the record that I spent many hours researching, both statistics related to my specific situation, and menopause in general. (This is deserving of its own post that I’ll hopefully write in the future, but in the meantime, read or listen to this book.)

Then I had a meeting with my surgeon where I cried twice while presenting my various facts and figures, and neuroses. She was super-nice, saying that there were valid reasons for either keeping my ovaries or removing them and she’d support whatever decision I wanted to make. She was also super-smart in giving me a deadline for a decision. We both wanted her to be able to give her surgery slot to someone else if I wasn’t going to use it — and she could probably see the likelihood of me digging a research hole into the center of the earth if someone didn’t stop me. She told me to let her know in a week and I agreed.

During that week, I talked to two women, both friends-of-friends, who have gone through surgical menopause, and they shared their experiences. During this time, I’ve been so inspired hearing from people who have gone through their own unique struggles and emerged on the other side. I’m repeatedly amazed by people’s strength and resilience and their emotional generosity in sharing their stories with me just because I ask.

Both of the women I talked to noted that my decision, in the end, would come down to “trusting my gut.” This is difficult, because my gut and I have a long history of communication problems. Is it that I’m not a good listener I’ve wondered, or is my gut a little dysfuntional? (Since my soon-to-be-removed colon is part of my gut, I know there’s some kind of metaphorically snarky comment just asking to be made here, but I don’t know exactly what it is.)

In hopes that my gut would pull back on giving me the silent-treatment, I decided that on decision day, from the moment I woke up, I would not speak to anyone, not look at any screen of any kind, not read or even write until I made a decision.

I woke at about 7:30.

A little after 2:30, I turned on my computer in order to message my surgeon with my decision.

The seven hours in between were very… interesting. Interesting and a little boring. Elongated and super-slow, but also not slow. A relief, but also mildly excruciating.

I don’t know if my gut ever shouted, but in the end I felt happy with my decision—or happy to have it made. And my half-day experiment gave me a tiny sample of a new adventure I am planning, with both anticipation and dread… a 10-day Vipassana course.

(Ummm, yeah, this is is also worthy of a separate post in the future— stay tuned!)

Lynch Syndrome Awareness Day

Yesterday, March 22, was Lynch Syndrome Awareness day. Today I posted a version of this to Facebook:

I’ve dragged my feet about posting, I think partly because I tend to resist to “cancer awareness” campaigns. Maybe it’s the Midwesterner in me that is skeptical about making a “big fuss” out of things. I suspect the attention-seeking of mostly being a grab for marketing dollars and wonder, WHO is all this AWARENESS helping?

But then I think about this: Two decades ago, when doctors discovered my first colon cancer, it was already a Stage 3 tumor the size of a small fist. It wasn’t until after my surgery that I learned I had Lynch Syndrome—a genetic mutation I’d never heard of. Today, someone with my family history could ask to be tested, and, if positive, could be screened starting at age 20. So WHO does Lynch Syndrome awareness help? It would have helped (and has helped) ME…and it might help someone you know, too!

So “Happy Lynch Syndrome Awareness Day!”

Related post: “I Have Lynch Syndrome.“

A Visitation (All the Woo-Woo, #1)

“You had a visitor during your treatment.” 

(my friend C_, who sometimes see things that other people can’t)

A few years ago, for a scripted project, I read several books about research on reincarnation and near death experiences. There are a number of reports that make it seem likely that there is life beyond our own lives – that our consciousnesses don’t just end.

From there, it’s not a far jump to think that sometimes those other planes might touch our own at time.

Despite this, when I talk to people who tell me about conversing with their “angels” and “guides,” my reflexive thought is, really? Intellectually I am open and curious. At my emotional core, I’m a skeptic.  

I was called out on this by S__, a therapist I booked a session with to help me process my latest health crisis. She brings alternative methods into her practice so over the course of our session she “pulled some cards” for me, and consulted her guides. She concluded I was living with uncertainty. Who isn’t? I asked. But she said that I was haunted, more than others, by uncertainty and thoughts around death. Again I pushed back (at least internally) because I don’t think of myself as someone who dwells on death (after all, there are so many more immediate things to worry about!). But, then I considered more, and accepting we are shaped by our childhoods, and given that my childhood was repeatedly marked by periods of intense uncertainty that accompanied my father’s illnesses with possibility of death looming over each one, I had to admit she probably wasn’t wrong. 

S__ said to me, “Life will be different for you when you believe in something after death. When you know there is.”

I agreed, though I wasn’t sure how the observation was helpful. Of course it would be more pleasant to believe in something like that, but if I’ve lived half my life without knowing, I couldn’t imagine what would need to happen to change that. Still, I dutifully recited the meditation script she gave me for the next week and ordered her book recommendation* from the library.

A week or so later my two friends D__ and C__ came to our apartment. They are taking an energy healing class where they need to accrue some practice hours, and they generously offered to do three of their sessions with me. The session itself was similar to a reiki treatment, although there was more movement. At times it felt like a pulling and moving of energies, though it’s subtle, and I never forget that I might be imagining it.

When the treatment was over and we were sitting afterward, C__ said, “You had a visitor during your session.” 

She described this visitor as “a tall, stern lady who stood very straight”* who stood at the head of the massage table during the treatment.

“She looked a little like you. I thought maybe was an older version of you, because she said her name was “B.” But then I got that it wasn’t B, for Barrington, but spelled B E A, short for Beatrice. She didn’t say much, just that she was there and that you’re strong, you’ll get through this.”

I gasped. I’ve only known one Beatrice. She was the mother of a serious boyfriend in my 20s, someone I’d considered to be almost a mother-in-law. Everyone had called her Bea. She had died almost exactly two years previous to the day of our session   Though I’d never thought of her as “stern,”she was tall, with good posture. People had observed we were similar. In this moment, I was struck, less by certainty than by emotion. Tears welled up when I thought of her coming to give me encouragement for my situation, and also evidence of some continued existence after life just when I had been asking for it! I’m here, she’d said.

I think this would make a good ending for the story, but it is not the end. 

C_ and D_  returned a few weeks later to do a second healing session, This time, C__ again saw Bea, and this time Bea was holding hands with a younger man, whose name Caron intuited also started with the letter B. Bea said this man was known to me, although she (Bea) knew him better. That he had struggled earlier in life, but now was doing better. And that I would remember who she was referring to. I wracked my brain, but I didn’t remember. I couldn’t think of a single mutual acquaintance whose name began with a “B,” much less a dead one…

“Wait…” C_ consulted her pendulum, then said, surprised, that she didn’t think the man-whose-name-began-with-B had passed over. He was still alive. That was interesting! But not that helpful, since I still couldn’t think of anyone. I let it go. Not everything needs explaining, and ,of course, a skeptic doesn’t need to go chasing belief.

Some time after this, I got a call from a sort-of cousin. His stepmother was the sister of my mother’s father. He and my mom spent time together as children, then lost touch for decades before re-discovering each other in their 70s. His name is Bob.

I’ve met Cousin Bob in person only twice, but he will occasionally call. Whenever we talk, there’s usually a point where Cousin Bob brings up childhood memories involving relatives who died before I was born and haven’t really heard of. My mother almost never talks about her father’s side of the family. Which I guess is how it’s possible that I was caught by surprise when I heard Cousin Bob say “something, something, your great-grandmother, Beatrice.” 

I asked my mother, and she confirmed that, yes, I had a great-grandmother named Beatrice, and recollected that yes, people had called her Bea. And, yes, she was a stern woman, “We were all scared of her when we were kids.” I recounted Bea’s words, You’re strong, you’ll get through it. My mom said, “Yep, that sounds like her.”

So, to recap: My great-grandmother was named Beatrice, and the person most closely connected to her that I also know is a man who’s name begins with “B.” He is, without deep-diving into his life, someone who had struggles earlier in life, but is doing better now…

I had wondered, what would need to happen to make me believe? And then this happened.

And S_ was right, it has changed things. The transition has been more subtle more than dramatic, but it’s there. My immediate circumstances are the same — none of my visitors (there have been others now) have hinted at what decisions I should make about my health or career. Confusion still abounds— but I’m considering a different sense of proportion. There is a new question I am contemplating:

What does it mean if one’s singular life on this planet is not the entire measure of one’s existence, just a segment of something larger?

* Book recommendation: Journey of Souls by Michael Newton, in which the author interviews people under hypnosis about their existence between reincarnated lives.

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!

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.