Ups and Downs

(Second week after a full colectomy.)

Recovery— or I guess life— has its ups and downs.

The first rosy flush of “up” in my last post was followed by a couple days of down — of pain not diminishing as quickly as I hoped (or becoming less masked as I tapered back on the meds), of mysterious bruises and swellings that are probably normal and not worth a call to the doctor but the source of niggling worry because what if they are not?

And also the sadness of coming face-to-face emotionally with what I already knew logically — that surgery is crest of a hill but not the end of the journey. This goes beyond my physical recovery. I haven’t really gone into the details of how, in these past months I’ve struggled with focus and direction in my creative / career efforts, but at the same time allowed for the fact that the health situation would have me reasonably, distracted! And I’ve hoped that as I move past my issues of health, there will be a moment when I’ll again feel the desire to finish any of a dozen unfinished projects — and even the hope that one project will call to me louder than the others, providing a clarity I’ve been sorely lacking. Of course, rationally, I knew it was unrealistic to expect that this desire and certainty would descend upon in my in my first days home from the hospital, but irrationally, I was still disappointed that they didn’t.

But after a day or so, the mystery swelling went down in my body and I decided I could be gentler with myself in spirit. After a week of convalescence with my mom I headed home with Paul and we had a really nice Easter with family where I was feeling good. The next day, I received word that the pathology report for my surgery was back:

NO LYMPH NODES INVOLVE, NO CHEMO!

Which is, of course, great news.

I returned to a standing weekly client meeting, and feeling frisky, even shot off some emails, feeling cocky, yes, I know it’s less than two weeks, but energetically, I’m past it, it’s downhill from here!

And then on Tuesday afternoon, I got hit by a mysterious new pain, between and under my ribs. It was alarming in that it was sharper, and in a different location than any previous post-surgical pain — but I know from experience that even the most dire-feeling Am-I-having-a-heart-attack? Am-I-dying?? pains are usually just “trapped gas.” Knowing this, I went outside to “walk it off,” only to return, defeated, after only half a block. I spent Tuesday night and Wednesday day and night curled around a hot water bottle.

But, now it’s Thursday morning and though I’m not 100%, the pain has subsided and shifted in a way that supports the idea that yes — even though I paged my doctor and considering the emergency room at one point — it was likely was just trapped gas that is running its course, if not so quickly as I may wish. There’s also a chance that this episode may be the first in a series known as “the new normal”— a non-serious but painful pain, that, as it comes and goes, will need to be analyzed (did I eat the wrong thing, or too quickly, or in the wrong order?), and ultimately incorporated—ie. balanced and juggled—along with the rest of life.

“Balancing and juggling” feels thematically appropriate to a tarot card I pulled last night. (Very recently I’ve been introduced to tarot cards, and have been drawing a card each morning and evening, not as prophesy, but as a way to learn the cards and think about life.) I drew the Two of Pentacles.

Also called “The Juggler,” the Two of Pentacles is about trying to keep all our earthly balls in the air— work, family, money, projects, food, clothing, shelter etc. And, of course, holding our temporary bodies together for as long as we can while we’re here!

I think I have a lot in common with the dude pictured on this card: We’re both running a little to stay underneath those “infinite” balls that we’re juggling or balancing— or both. Our shoes don’t match, but at least we’ve got some on — even if the same can’t be said for pants! Our boats rock on topsy, turvy, turbulent seas, but they’re still upright and moving forward. Sure, it all feels a little precarious, but somehow, nothing’s crashing to the ground. Maybe because we’ve both had some practice with boats and balls and waves all moving up and down, and understand that, tiring as it can be, there’s some fun in doing the dance, seeing how long we can keep it all going!

Write about THIS (All the Woo-Woo, #2)

In a previous post, I talked about my energy-healer friends C_ and D_ supporting me after my cancer diagnosis, and how Woo-woo visitors from the beyond joined our sessions. You can catch up here.

On my third session with C__ and D__’s another relative comes to visit. They think his name is Robert. “He’s dressed,” my friend C says – “like a Quaker, but he’s not a Quaker.” “He’s dressed like Benjamin Franklin,” D_ clarifies. (Apparently she can see him too?) “He’s like a Puritan, but he’s not a Puritan — he’s not someone who’s afraid of a drink.”

I’m getting the picture—my ancestors were Scotspeople, hard working pragmatists who likely did enjoy a drink. Judging from their descendants (the ones whom I’ve met or been told about) they weren’t much for coddling and were advocates of “getting on with things.

Which is in keeping with what Robert tells them to tell me. You’ll come through this. You come from “strong stock”  and there are “still important things you have to do.” *

Pretty much the same kind of tough love as I got from Beatrice, but with a little something added. I am, of course, interested in what “important things” Robert sees on my life’s to-do list. It’s fun to imagine doing something important, especially if it’s something that other people might think is important, too, or that might involves rewards like accolades! or money!! Though I’m guessing it might be writing a student referral letter that gets them into school, changing their life, or some step in my own development, like achieving more inner peace or paying off my college loans. If it’s like other predictions in my life, the trajectory will be that for a while I’ll remember and wonder in the back of my mind if every little thing is the important thing… and then I’ll forget all about it. And then much later I’ll remember again and, looking back, assign importance to to something I did in the interim when I wasn’t thinking about it at all.

But Robert isn’t the only one with a message for me this evening. My friend C__ says there are “others” who have come to visit as well. (As of now, for want of something appropriate to call these energetic beings from the beyond, I’m just going to call them, collectively, “the Woo-woo.”) C_ says the Woo-woo have some advise for me, and that advice is:

Write about THIS.

“THIS is in all caps” she says, relaying their vehemence. “Write about THIS.” 

“What does that mean?” I ask.

“I guess it means THIS, right here. What you’re going through now.”

(Brief digression: If C__ were the type to consciously or unconsciously embellish, this might be the moment. Nothing commits writers to life like a some project they feel they are “destined to write.” However, this is not some deathbed situation where I require new purpose to give me will to live, and C_ knows this. Also… I don’t think she’s not the type to make up the Woo-woo. So, if she says the Woo-woo is saying I should write about THIS, then she’s hearing the Woo-woo say I should write about THIS.

Okay. So what part of THIS are they referring to?

  • My health journey, either this particular cancer or, the mutation behind the cancer—the Lynch Syndrome? 
  • My journey into more WOO-WOO terrain, (such as the Woo-woo telling me to write about THIS”). 
  • Or just LIFE in general? A cancer / woo-woo combo?

Is my assignment from the Woo-woo is to keep some kind of Lynch-Syndrome-Life diary? That would be… serendipitous? Since it’s something I do already do here in this blog (albeit on a sporadic basis, and always with some sense of guilt for not spend the same time looking for a real job or writing things that I could show my agents or at least submit to literary journals). 

Although, when I mention I’ve already been writing about THIS, C_tells me, she thinks I’m supposed to make it easier to access. “Like a YouTube or a podcast.” I feel like this must involve at least some interpretation on C_’s part. A bunch of Woo-woo’s in Ben Franklin era clothes can’t be saying “make a YouTube channel” right? 

I don’t ask this aloud, but C_ answers anyway, “Not Youtube specifically, but something where people will see it or hear it.”

Here, I’ll mention that if you are reading this post, you should feel special, because out of the 7+ billion people in the world, fewer than 20 are likely to read this post,** and you are one of them! For me, one of the more freeing aspects of this blog is that almost nobody reads it. The almost is key. As a writer, I work and revise and publish on the premise that someone will probably read a post I write. I love my handful of subscribers (hi guys!) and the idea that a stranger might randomly happen upon any post at some point in the future. But there’s also security in being mostly lost in the online crowd, free from criticism, cancellation or multiple opinions for how I should revise my writing or my brand or whatever. 

It’s safe.

Which is NOT how I feel about talking to a camera on YouTube. I don’t love looking at myself on camera, feeling foolish and vulnerable and conscious of the growing waddle under my chin. Editing video is always tedious and frustrating. And I have mixed feelings about uploading them. What audience are they aimed for? Other people who have Lynch Syndrome, I guess? YouTube videos, like blog posts, can exist without getting any views. Is that what I want? Or does an unwatched video feel somehow sadder than an unread post?

I am resistant to the idea. Thinking about it makes my chest tight.

But in these last months, I’ve turned a corner in my appreciation for video and audio. While I’ve combed through a lot of medical journal articles, which were for informative but anxiety provoking, it was a relief when I could find explanations in video or a podcast form, delivered by a person. Personal delivery made information easier to digest, assuaged some of my anxieties, and reminded me I am not alone in my experiences. I was very grateful.

Would the Woo-woo tell me to Write about THIS simply because writing will be therapeutic for me? (Maybe… it could be, right?) Or are they pushing me to stretch and put myself out there for other people—to inform them or help them feel less scared and alone?

And, just to circle back around… could this effort —whether big or small, or the seeds of something else — be important?

I’m going to have to make a YouTube video, aren’t I? 

F*ck. 

*Robert doesn’t make any great efforts to prove his existence or his exact familial connection to me, but when I ask my mom later, it turns out there are plenty of Roberts on branches of our family tree across multiple generations.

**Extrapolating from historical statistics of average posts on this blog.

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!)

Is it Time to Kondo My Ovaries?

Guess what? I have a date for my surgery—April 7!

It’s a little more in the future than we’d originally envisioned, by about a month. Which gives me some time to do what I do best… over-think it!

Part of the reason for the delayed date is that is that we needed to find an available time for not just one, but two surgeons. One surgeon to remove my colon and another to remove my ovaries at the same time.

Wait, what? You’re thinking, if you’ve been keeping up so far, when did the ovaries get involved here?

It goes back to that fun Lynch Syndrome chart that tells us that while the risk of colorectal and endometrial cancers are the highest, the risk of ovarian cancer is also pretty high (between 8-38% according to the chart). When someone has a high risk because of a genetic mutation, the option is always on the table to remove the risky organ as a prophylactic (preventative) measure. If I have my ovaries removed, my chances of getting ovarian cancer are decreased by 95%. (Yeah, I know it seems like it should be 100%, but for some reason it’s not.)

For years, I’ve been doing ultrasounds and a special blood test for a marker called CA-125 to look out for signs of ovarian cancer, but both of these tests are felt to be very limited—definitely not as sure a bet as removing my ovaries. So for years, doctors have been checking in with me to see if I want to get rid of my ovaries, and I’ve been saying “Guys, not yet! Can’t you see I’m still using them!” This is because even though I’ve had my uterus removed (a hysterectomy), my ovaries continue to pump out hormones, which means I haven’t yet gone through menopause, and there are definite benefits to that.

But now… I’m probably within a few years of not using them so much (they are producing less hormones, approaching a natural menopause) and, of course there are going to be some holes cut into my abdominal region anyway… why not do two-for-the-price-of-one? (Note: I’m fairly certain I will NOT get two surgeries for the price of one! But it will be going under anesthesia only one time, getting cut into only one time and I’ll can maybe max out my insurance deductible just once.)

Given all this, it seems like it makes sense to, a lá Marie Kondo, thank my ovaries for their service, for the joy and protection they have provided, and let them go…

… Except that when I met with to my surgeon the other day, she said something in passing like “yes, even though mortality rates go up with ovary removal, in makes sense to blah blah, medical stuff…”

Wait… what was that about mortality rates?

Thus far, no one had mentioned this fact before now, but it pinged my radar enough to spur some internet digging, which turned up articles like this one, from 2017, called “Bilateral Ovarian Removal Associated with Increased All-Cause Mortality,” and one from 2013, called “Long-term Mortality Associated with Oophorectomy versus Ovarian Conservation in the Nurses’ Health Study.” In short, women who have their ovaries removed before their natural menopause die sooner, either from heart-related issues, or just… other stuff. As my doctor put it “we don’t exactly know why.” (However, there are also articles like this one, that say the difference in mortality is are less or perhaps negligible if the removal happens after age 50. Others say 55. One assumes that one’s age of natural menopause is a factor, but would be hard to incorporate into a study.)

So maybe, I’m thinking now, I should hang on to my ovaries a little longer — maybe they’re still sparking joy after all?

And maybe my overall risk ovarian cancer / dying from ovarian cancer isn’t quite as simple as the scary chart would indicate. My overall risk of ovarian cancer is lower because I’ve had my fallopian tubes in the past. The study sited in “Ovarian Cancer risk after salpingectomy” says the decrease in risk might be as much as 50%. This paper I kind-of-partly-undertand called “Features of ovarian cancer in Lynch Syndrome” seems to be saying that the survival rates for Lynch relate ovarian cancers are statistically higher than for sporadic cancers (not that I’m keen to test it and find out) due to being diagnosed at an earlier stage and also to having different properties.

Mortality aside, I’ve also discovered there are a number of more immediate effects to menopause — maybe exacerbated by being a sudden, surgical menopause—that I hadn’t realized. While we associate hot flashes to menopause, no one has ever sat me down and talked to me about potential hair loss, fatigue, anxiety, depression and brain fog. These symptoms are not a given, and they are not life threatening, but they are quality-of-life threatening.

Needless to say, I’m going to be ruminating…

Cartoon of Ovary on red carpet
Cute illustration totally stolen from someone’s old blog – credit at bottom.

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.