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The Glitch in my Matrix

This long post adds another chapter to this year’s medical saga, and it contains some medical details you may not want. Buckle up, folks – it’s been a hell of a year.

As many of you know, the first half of this year saw me struggling with significant health issues – ovarian tumors that were misdiagnosed as endometriosis. Those masses were discovered to be dermoid cysts in July during my surgery, and were removed, leaving the rest of my reproductive system intact.

When I woke up to find that my hysterectomy hadn’t been performed because the unlikely “edge case” I’d allowed for in my surgical orders had come to pass, I was filled with a sense of foreboding. This dermoid had been on my RIGHT ovary. My 2006 dermoid was on the LEFT ovary. The chances of a recurrence – most likely on the same ovary – are under 10%; bilateral is almost nonexistent. So what was to make us think it wouldn’t happen a third time?

My surgeon tried to reassure me that a third dermoid would be very unlikely, again under 10%. But in that exam room in late July, he agreed that if I had a recurrence, he would perform a total hysterectomy for me. We scheduled a monitoring plan that included ultrasounds every 3-6 months to catch any recurrence early. My tumor marker also didn’t drop immediately, so I spent the next few weeks anxiously waiting for a repeat test to tell me that things had gone in the right direction.

Meanwhile, the recovery from the cystectomy continued. Physically, I was fine. 4.5 weeks after the cystectomy, I ran a 10K in 1h07m – close to a personal best. That was a bit harrowing as I’d planned about an 11:30 min/mile pace, but when I got to the race they announced everyone needed to run a sub 11 minute pace. What can I say? I’m stubborn. But my training runs up to the race required medication, because my abdomen was still in pain even though I was medically cleared to run.

But I’m pretty familiar with the pain profile of abdominal surgery by now; July was my 3rd. While the incision pain subsided, there was a deeper pain lingering long after I’d exhausted the surgical painkillers. And my other symptoms, like the acne and digestive issues, had resumed after a short respite. 5 weeks in, after a tearjerking pain episode (and after I’d already returned to work), I called the surgeon’s office. “Is this normal for 5 weeks out?” No. They booked me for an exam the next day, Thursday.

His peer (he was out on vacation) did a physical exam, and told me she did feel something and my uterus might be enlarged. She booked me in for an ultrasound the following week. I was a bit of a wreck during the interim days; that tumor marker was still up, I was headed in for another ultrasound, AND I was in the infusion suite for another hemochromatosis-related phlebotomy. That appointment did not go well for me.

Still, I survived, and made it to the ultrasound office yet again. I HATE these ultrasounds. She looked for the right ovary first – the one that had most recently had the large dermoid cyst – and… couldn’t find it. I have NEVER had that happen before. (We believe it’s drifted up into my bowels. Ha! TMI. Trust me, that’s not great for your relationship with food.)

And then she moved on to the LEFT ovary. The ovary involved in the 2006 incident and the much larger dermoid. (We did remove a stable mass in July from this ovary, so it didn’t get out unscathed.) The technician rotated the monitor to point at me and said, “Well, there’s your problem.” The left ovary was dwarfed by a large, black hole – a 5cm cyst. 5 weeks after all traces of masses had been removed from BOTH ovaries.

Well, fuck. Déjà vu. My Matrix glitched.

(“Glitch in the Matrix” is a reference to an incident in the first Matrix movie. A black cat crosses a doorway twice in the same way. It is a sign that someone’s edited the Matrix. A bad sign. And a reminder that things are about to go far beyond your own control.)

I recall laughing somewhat maniacally, because what the hell else can you do when your nightmares become manifest on a black and white screen in a hospital? Here I was, trying to pick my career back up where I left it, training for a half marathon, booking my new company’s first corporate workshop, joining the cast of a new weekly live Twitch broadcast, and preparing for my European speaking tour – and suddenly another surgery is on the table. 2017 has been my living nightmare.

Because my surgeon is one of the pioneers of robotic-assisted gynecological surgery, he is very hard to book if you’re not actively dying. I had to wait over a month to get in again. Luckily, since we’d had these discussions before, I was able to get on the surgical calendar much earlier via a series of determined phone messages back and forth. When he saw that I’d had a recurrence, he confirmed he’d do the surgery, and I chose a mid-December date. Still, those were stressful days, before he’d officially agreed, wondering if I’d have to see someone else.

And THEN I had to broach the subject of another disability leave at work. But work, you see, was also complicated. I’d made some excellent progress during my initial weeks back from work – launched a new set of UX guidelines, built several prototype chatbots, and more – but we’d been re-orged, and I was suddenly between projects. Trying to move to my next opportunity while facing another 6 weeks away. It’s been a hard year, to say the least.

One Step at a Time

I survived September (and the intervening months) thanks to significant consumption of Advil. I still need it to sleep most nights, as movement often causes ovarian pain. I miss side sleeping, I’ve been mostly incapable of it for the better part of a year. The pain is not constant, largely because after a year I’ve learned how to cope (stop sitting, take large amounts of Advil, try going for a run, drop to a liquid diet) but even when there’s not pain, the other symptoms from my traveling ovary can be very disruptive.

Both legs of my European tour went well, though the flights were undeniably painful. I would certainly not recommend flying in this condition to those weak of constitution. But as an enchanted tree repeatedly told me as Cinderella in “Into the Woods”, opportunity is not a lengthy visitor. If I ran a marathon with ovarian tumors, certainly I can survive a flight? I’m certainly a “Princess and the Pea” flyer in my current state – overly susceptible to pain every time the person behind me uses their tray, accesses their underseat bag, or hits the in-seat screen enthusiastically.

During my previously-scheduled ultrasound in October, they STILL couldn’t find my right ovary. The left was… diminished. The cyst had shrunk, but it had gone from simple to complex. For those who don’t spend their lives speaking with gynecologists, “simple” cysts are filled with fluid only and are more likely to be a product of the natural cycle (though in 10 years of on and off ultrasounds, I’d never had regular ‘functional’ cysts; I doubt we just started.) “Complex” cysts have an internal structure, and include dermoids. So: smaller, but more foreboding. And what the hell, right ovary? Stop the walkabout already.

November saw a very bad week of pain (8+ Advil a day, and with no sick days left those are working days), which removed (most) of the residual doubt I had about pseudo-voluntarily sterilizing myself. Certainly my other option is to watch-and-wait, but with regular pain I just can’t live my life like this until menopause. That’d be 10-15 years. I’d never make it. And each ultrasound costs hundreds of dollars at minimum, depending on the scope. MRIs cost 10 times that. Every doctor’s appointment costs several hundred dollars. The surgeries are tens of thousands of dollars. Watching and waiting will bankrupt us in a country where healthcare isn’t guaranteed or particularly covered.

I’m not going to lie. This decision was, and still is, a struggle. Motherhood was never a goal of mine, but closing the door on it still feels like a failure, probably for cultural reasons. I’m a godmother, aunt, (another title coming next year), and have taught hundreds of middle school girls; most days that feels like enough. But some days are darker.

Running through the valley of the shadow of death

I DID still run the Disneyland Super Heroes Half Marathon Weekend and the Infinity Gauntlet Challenge: my first time running a 10K and Half Marathon on back to back days. I finished the 10K in 1hr12m, and the half marathon the next day in 2h53m. Not personal best times, but given that (1) four days prior I’d been incapacitated by pain, (2) the new cyst interfered with my ability to train, (3) I’d had major surgery exactly four months prior… still a victory. My finish for the 10K was top 20% of the women, and the Half was top half. My goal this year – before all of this – had been a PR in the half, but I had to settle for longer distances (my first full marathon and my first 10K/Half weekend) instead of personal bests due to everything that’s happened out of my control.

Why run? My philosophy this year has been – “If I’m going to be in pain anyway, might as well be awesome while suffering.” Adrenaline is a hell of a drug, and does help (for several days) dull the pain of my ovaries; but it’s not scalable as an actual pain relief method since it puts a ton of strain on the rest of my body. Still, on many days when I hurt, I went to run anyway (with some Advil) so that the pain didn’t win. I don’t want the pain telling me how to live my life.

But I’ve had to make sacrifices AGAIN, especially around driving. I have not felt safe driving long distances while suffering from these cysts. First of all, seat belts were clearly designed by someone who never had murderous ovaries: the belts cut right into my most sensitive regions. If you want to know what it’s like, jam a pen cap, pointy end in, between you and the seatbelt and then try not to crash your car. Secondly, the stress hormones generated by driving go STRAIGHT to the damaged ovary right now. Those distractions could be fatal when operating a motor vehicle. I can’t eliminate driving from my life (the company re-org came with being moved to an office in another city, with a tripled commute) but I have eliminated all responsibilities that required driving solo into Seattle, and I’ve significantly shifted my work hours to avoid the worst of rush hour. This means that I’m still on hiatus from improv performances, heartbreakingly. I’ve filled the gap with Twitch, and made an exception in November when my husband cound drive me, but it is a big sacrifice that I didn’t want to make for this long. Oddly, movies are a sacrifice too; I’ve only made it to one or two and that 2-3 hours sitting upright is always painful.

We still went to the UK for Thanksgiving – again, “if I’m going to be in pain anyway…” Besides, trying to endure a holiday built around (1) sitting for extended periods of time and (2) excessive consumption of food; two of the most painful ideas in my life? Bad idea. We had a mostly great time ASIDE from some transit issues that provoked my pain. Alarmingly, my RIGHT ovary started acting up – oh, hell no. Burn the whole reproductive system down.

Now that we’re on the other side of my travel, I’m firing up the old surgical recovery engine again. My CaringBridge is updated, the disability paperwork filed, stocking up on Ensure shakes. Still need to clean a bit so I don’t hate my space. This is now my 4th abdominal surgery (6th surgery total, thanks to the knees.) I still hate it, but I know what to do.

Frequently Asked Questions

Q: How are you doing? Like, really?

In less than two weeks, I say goodbye to my reproductive system in hopes of being able to continue my contributions to society in other ways without regular pain. I’m honestly emotionally numb at the moment; I’ve compartmentalized the horror of what’s happening to me. As I sit here writing, not quite fully inclined to avoid the compression of my abdomen, I’m in pain. My left ovary has been “awake” all morning. I’ll take Advil later as this has gone on too long, but it seemed fitting to wallow in the pain while writing this update.

Q: When and where is the surgery?

I’m not sharing a specific date or location at this time for security and privacy. I’m using CaringBridge to provide updates to trusted “real-life” friends and family. I will post an update on my condition to Twitter before Christmas.

Q: What is the surgery?

Total abdominal hysterectomy: loss of ovaries, uterus, fallopian tubes, and associated tissues. I will be in surgically-induced menopause and will be starting hormone replacement therapy to moderate those symptoms. I am aware of the risks of HRT, but (a) many of those have been debunked or diminished in past years and (b) I have consulted my entire team of very experienced doctors and many friends who are personally living with this exact transition. As far as we’re concerned, the conservative approach finally failed in July, when we had an immediate recurrence of the cysts. My surgeon is extremely experienced and as it is robotic surgery, my recovery time is less than a traditional procedure (aside from the menopause, which robots can’t help with.)

Q: How can I help?

Many folks – both from “real life” and fans of my work – have been incredibly generous during this journey, especially during the July surgery. Thank you. Many of the recovery items will now pull double duty and help once again. I must say, please don’t send anything that’s not on my Amazon wish list already. Especially Pikachus – we were overwhelmed by several dozen, and I even hurt myself during the last recovery trying to make room for them all.

If you really want to help or are one of those folks who prefer tangible ways to express sympathy and support, in this season of giving, please consider a donation in my name to Planned Parenthood – so many women don’t have access to the level of care I’m receiving, and PP is their first and last hope. Or Hopelink, a local charity that supports folks in my area dealing with hunger or homelessness. If you really want to donate to something that affects me directly, I humbly suggest my improv home Unexpected Productions, or the nonprofit home of my new show Leviathan, GeekSpaceTV.

The BEST support this time around is the kind that supports my existence and yet doesn’t cost anything at all:

  • Reaching out on Twitter or email to check in or share kind words about how my work has impacted you
  • Spread the word about my design talks or Medium posts
  • Contact me about booking me via Ideaplatz for a design workshop or talk in 2018 (okay, that one costs money)
  • Joining me for my recovery Twitch streams

Q: When will you be back?

Of course, no one can really say what will happen on the operating table. But if there are no complications, I’ll be returning to work in mid-January.

As for my speaking career, I planned my dates to ensure I’ll be safely recovered prior to my first appearance (yes, in Europe) in February 2018, which will be announced very shortly. In fact, I’ll probably be a new woman, since I’ll be able to stand onstage without worrying about chronic pain. Very excited for this upcoming opportunity. (And if you want to book me for your event, please don’t wait to reach out: my 2018 calendar is already starting to fill.)

I plan on repeating my physical recovery curve: that is, to train for a 10K+half marathon occurring 4 months after the surgery, this time the Star Wars Half Marathon Weekend in Orlando in late April. Part of the reason I stuck with the Infinity Gauntlet last month was to make sure I was as healthy as possible leading into this surgery, to give me the best chance of success and swift recovery. I hate days spent in bed. Life’s too short. I want to recover and get back to being awesome.

Sometimes heroes have to save themselves

I’ll close with a story from the Avengers Half-Marathon. I chose to sacrifice some speed to wait in line for Thor, in the shadow of the Matterhorn at dawn. I’ve grown to like the character through the series, especially his relationship with Hulk (my husband’s favorite.) My running gear for the weekend was Thor-inspired, with a red cape and silver skirt and armbands. It was a relatively long line, and as I neared the front I began pondering what pose would look best in the photo – I wanted it to turn out since we’d been waiting.

But when I got to Thor, he looked at me and my getup, and solemnly said “Hello! … Where is your hammer?” I didn’t expect him to acknowledge my closet cosplay, so to speak, so I was a little tongue tied. “I … couldn’t get it on the plane?” I replied. He nodded, then said, “You can use mine.” He then held the hammer aloft between us, so that I could also hold it for the photo.

Look, I know (a) this is an actor working at a theme park (b) Thor is a fictional construct (c) this actor knows nothing about me and the year I’d had. But in an emotional time, halfway through a race in spite of my murderous ovaries, it meant the world to me that Thor found me worthy. I hope that once I’m healed, I can stop focusing so much on myself and return to some of the other ways I used to be able to contribute to the communities around me.

I watched Thor: Ragnarok the next week, and a line struck me like an arrow. “I choose to run towards my problems, and not away from them. Because’s that what heroes do.” That’s how I’ve lived my life during this journey, and how I will continue to live it long after my (murderous) ovaries are a fading memory.

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