Nina’s Big Hysterectomy Adventure

At long last, I am on the other side of “hystery.” I’ve had a rough year, health-wise, culminating in this crisis. But on Wednesday I got my long-sought-after hysterectomy (ovaries stayed in, everything else removed). It was complicated, due to the location of the fibroid in my cervix, and the surgery itself took 4.5 hours, and the doctor tells me I can expect more recovery pain than a “normal” hysterectomy. But I’m recovering steadily and glad the wait is over.

Photos below, including one of the “specimen” the surgeon removed. If you are weak of stomach, do not scroll down.

From the car, headed to SIU St. John's Hospital, Springfield IL.
From the car, headed to SIU St. John’s Hospital, Springfield IL.
Before the surgery. Phone picture is blurry, but my head still wasn't. I just wanted to get on with it already!
Before  surgery. Picture (taken on SpecialManFriend’s tiny phone) is blurry, but my head still wasn’t. I just wanted to get on with it already.
After surgery, which took 4.5 hours. I was under for longer than that, as actual surgery started kind of late. Last thing I remember is being wheeled out of the pre-op room, around 1:45pm. Next memory is being spoon-fed ice chips by a nurse, around 8:30pm.
After surgery, which took 4.5 hours. I was under for longer than that, as actual surgery started kind of late. Last thing I remember is being wheeled out of the pre-op room, around 1:45pm. Next memory is being spoon-fed ice chips by a nurse, around 8:30pm.
THE MONEY SHOT! I photographed it off the surgeon's phone (and added the labels later) since he can't share this photo because it's locked with a HIPA-compliant app. He will try to get me a print of it for my post-op appointment in a couple weeks. As you can see, the fibroid stuffing my cervix is not only bigger than my cervix, but bigger than my whole uterus. There is actually another fibroid in my uterus there, but it's obviously smaller.
THE MONEY SHOT! I photographed it off the surgeon’s phone (and added the labels later) since he can’t share this photo because it’s locked with a HIPA-compliant app. He will try to get me a print of it for my post-op appointment in a couple weeks.
As you can see, the fibroid stuffing my cervix is not only bigger than my cervix, but bigger than my whole uterus. For reference, here are diagrams of normal uteruses (uteri?) and cervixes (cervices?).
There is actually another fibroid in my uterus there, but it’s obviously smaller.
The next morning, after several hours of drug-induced haze (not exactly "sleep"). I had a catheter and didn't move my legs at all for about 16 hours. When I finally did, I had episodes of shaking and teeth-chattering, and later puking. Probably after-effects of anasthesia. In spite of a few setbacks, I got on my feet a few times and started peeing normally. The effects of the drugs seemed worse than the pain itself.
The next morning, after several hours of drug-induced haze (not exactly “sleep”). I had a catheter and didn’t move my legs at all for about 16 hours. When I finally did, I had episodes of shaking and teeth-chattering, and later puking. Probably after-effects of anesthesia. In spite of a few setbacks, I got on my feet a few times and started peeing normally. The effects of the drugs seemed worse than the pain itself.
I ended up staying 2 nights at the hospital. We'd only planned for one, but I wasn't stable enough to go home the day after surgery. Here's my bed right after I was discharged Friday morning.
I ended up staying 2 nights at the hospital. We’d only planned for one, but I wasn’t stable enough to go home the day after surgery. Here’s my bed right after I was discharged Friday morning.
Home at last! Momz got me this lap tray to protect my belly from the cats, and it was useful instantly. I look much, much better in this photo than I feel! But I can get up and walk, my 5 abdominal incisions are healing, and the brain fog isn't too bad since I stopped the presecription painkillers and am only taking OTC Naproxen.
Home at last! My Momz got me this lap tray to protect my belly from the cats, and it was useful instantly. I look much, much better in this photo than I feel! But I can get up and walk, my 5 abdominal incisions are healing, and the brain fog isn’t too bad since I stopped the prescription painkillers and am only taking OTC Naproxen.

Reviewing these photos, it doesn’t look like such a big deal. But it was at the time! And is now, to be honest, as I spend most of the day sleeping and dreaming very weird dreams, like having to eat my way out of a giant bathtub of lentil soup. Right now is my big morning at my ol’ computer, feeling semi-normal for a few minutes. I’m supposed to be mostly recovered in 2 months, at which time I am allowed to bicycle again. Until then, my posts may be stranger than usual.

UPDATE MONDAY JULY 2: I’m still getting better. My biggest challenge is coughing, which I can’t do without bad abdominal pain. But I have to cough to clear the crud from my throat, which is still recovering from the breathing tube I had in me for many hours. It’s quite a conundrum. Fortunately, laughing is not nearly as painful.

I had my first walk outside today, about a quarter of a mile. Everything looked amazing: flowers, trees, blue skies, clouds. I’m grateful to be alive.

UPDATE JULY  15: at my 2-week post-op appointment, the surgeon said the biopsy revealed the cervical fibroid was 7cm. My cervix also contained a 2cm polyp. And there were multiple fibroids in my uterus. Neither cancer nor endometriosis were detected.

My recovery continues to go well. I can now walk up to 3 miles a day, and don’t need any painkillers, even over-the-counter ones.

UPDATE SEPTEMBER 19: Today marks 12 weeks since my hysterectomy. I officially deem it a success! No more constant low-level abdominal pain. No more periods! And…I can have sex again without becoming violently ill. That’s right, I was facing a future of no more sex ever, because I got so sick from it (including vomiting, the last time before my fibroid was discovered). Turns out you’re not supposed to have a tennis-ball sized tumor rammed up in there! Now that it’s gone (along with its numerous sister fibroids and polyps, and the cervix and uterus they grew in) I feel MUCH better. A+ would recommend.

Is There A Doctor In The House?

Note: updated below
I NEED HELP. I have an orange-sized fibroid in my cervix, among other problems. The local hospital system is dysfunctional and corrupt – doctors don’t communicate with each other, or with patients (it is, however, one of the most PROFITABLE systems in the country! Isn’t that nice). My so-called “primary care physician” hasn’t seen me in 3 years, though not for lack of trying on my part. I visited the emergency room in great pain last year and since then have gotten bumped from specialist to specialist, and then dropped – it took 4 months to get a referral from the useless rheumatologist for the gynecologist, because someone somewhere dropped the ball and didn’t feel like it was important. Surgery that was supposed to happen this month or next, now won’t even start to be scheduled until July. Maybe. Every time Carle says they’ll do something by a certain time, they don’t – like I said, they took 4 months for a simple referral (and I had to get on their case to do anything about it at all). So even if I absolutely knew surgery was what I needed, there is an enormous trust problem at this point. Do I want these corrupt clowns cutting me?

A doctor in my family recommended someone at Loyola Medical Center who looked promising. So I called, and while they accept Medicaid, they don’t accept Medicaid managed by Meridian, which is what I have. So I called Illinois Medicaid and asked if I could switch to Molina, and they said no, I’m locked in until April of next year. So I called Meridian, who put me on hold for half an hour and then gave me numbers of nearby medical establishments which aren’t Carle. One of them was a disconnected number, the other, Kirby Med Center in Monticello, has no gynecologists at all. I called an affiliated gynecologist in Peoria, but his office is booked until at least July – and that would just be for an initial appointment.

What I REALLY want is a doctor that actually pays attention and can help me figure out what I should do. I won’t get that through my local med system. I probably won’t get that anywhere. But here’s my last-ditch effort before I resign myself to a life of pain and permanent celibacy (I can’t have sex without getting violently ill; celibacy is how I’ve been managing at all):

Are there any gynecologists among my fans? Any? I will travel to your state. I just want someone who will actually pay attention to my case. I am desperate.

Update 5-18: Due to help found through my cry of despair here & on fecebook, I have an appointment Monday with a gynecologist at SIU Med Center in Springfield IL. I was advised that teaching hospitals are eager for patients like me, and so far that seems to be the case. I called this morning, they were very helpful, and called back within 4 hours with said expedited consult appointment.

Then all I had to do was get my records released from Carle. Carle doesn’t accept emails for this (“they take too long,” they said on the phone). You have to visit their new vortex-of-evil administrative hell-plex on Staley road at Curtis, on the outside of town. Fortunately, SpecialManFriend(tm) was kind enough to take me there. I filled out the form, talked to the clerk, and came back after lunch. “Here are your records!” they said, handing me a big envelope. I almost walked off with it, but then decided to read through them first. Good thing, too – they’d neglected the most important, recent, and pertinent records of my MRI and ultrasound. They also neglected to include images, which I specifically requested. I politely asked for these things and they said, “oh, sorry, we’ll print those out now,” and “oh, ok, we’ll burn you a disc.” I’d be disgusted but I’m feeling too hopeful about getting a new doctor in a completely new, totally non-Carle system.

Who is Producer X?

Astute observers of Seder-Masochism will notice one “Producer X” on the poster:

Poster_ProducerX

This is consistent with the film’s opening credits:

Moses_ProducerX_edit

and end credits:

Endcredit_ProducerX_edit

Why? Who? WTF?

I made Sita Sings the Blues almost entirely alone. That caused an unforeseen problem when it came time to send the film out into the world: I was usually the only person who could represent it at festivals. Other films have producers who aren’t also the director. Other films also have crews, staff, multiple executives, and money. As SSTB’s only executive, I couldn’t be everywhere at once. Often I couldn’t be anywhere at once, due to having a life that includes occasional crises. Sometimes, if I was lucky, I could send an actor like Reena Shah, or musician like Todd Michaelesen, or narrator like Aseem Chaabra, or sound designer Greg Sextro. But most of the time it meant there was no human being representing the film when it screened at film festivals.

I’m even more hermitic now, and made Seder-Masochism in splendid isolation in Central Illinois. This time I worked with no actors, narrators, or musicians. I did try recording some friends discussing Passover, but that experiment didn’t make it into the film. Greg Sextro is again doing the sound design, but we’re working remotely (he’s in New York).

I like working alone. But I don’t like going to film festivals alone. And sometimes, I can’t go at all.

Such as right now: in June, Seder-Masochism is having its world premiere at Annecy, but I have to stay in Illinois and get surgery. I have an orange-sized fibroid in my cervix, and finally get to have my uterus removed. (I’ve suffered a lifetime of debilitating periods, but was consistently instructed to just suck it up, buttercup; no doctor bothered looking for fibroids over the last 30 years in spite of my pain. But now that I’m almost menopausal, out it goes at last!)

Film festivals are “people” events, and having a human there helps bring attention to the film. The reason I want my film in festivals is to increase attention. The more attention, the better for the film, especially as a Free Culture project. So I want a producer with it at festivals.

Fortunately, Producer X has been with Seder-Masochism from the very beginning. After Sita’s festival years, I knew that credit would be built into my next film.

So who is Producer X?

Whoever I say it is.

She’ll see you in Annecy!

Seder-Masochism Progress Report

My two goals for 2017 were to bicycle 5,000 miles, and to finish Seder-Masochism. I have 30 miles to go on the first goal, slowed down by mysterious health problems (for which I’m about to undergo a series of invasive tests). But the second goal keeps getting farther away.

I have all the pieces made, and they’re pretty good. The musical numbers are entertaining, and the “Our Father” scenes, based on recordings of my own father shortly before his death in 2012, worked remarkably well.

Scene of Our Father
Our Father

But the overall story isn’t holding together. In fact, it’s hard to tell what the overall story is. I set out to retell “The Passover Story,” but what is that? It’s Exodus. But it’s also more than Exodus, and far less. I tried structuring the film around the Passover Seder, and the result is incoherent. Perhaps because as a story, the Passover Seder is itself incoherent, its popularity and persistence due to early indoctrination and strict rules rather than narrative quality.

So now I’m looking for the story again, at this rather late stage. The narrative quality of the Book of Exodus itself is dubious, but it does contain at least one strong story: the going out, the leaving, the separation, the exit, the Exodus itself. I thought a lot about the meaning of Exodus a few years ago when I animated Death of the Firstborn Egyptians (the solo clip of which has become rather popular, at over a million views on YouTube alone).

Even as the mythological Hebrews exited mythological Egypt, the mythological Firstborn Egyptians exited Life, led by the profound power of Death – who is the Abrahamic God Himself, according to many Haggadot. According to the ancient Egyptian conception of Death and the afterlife, this was not necessarily a tragedy; in fact it would have meant something entirely different to the mythological Egyptians than it does to us. Still an Exodus, but from another point of view.

And that’s where I’m returning to seek my story. To Abrahamics, the Exodus is the story of going forth from the “narrow place,” from cruel slavery to freedom. But what were they exiting, really? According to them it was slavery, oppression, and, worst of all, the worship of false idols. “Thou shalt have no other gods before me,” commands Yahweh in Exodus 20. How does this story look from the point of view of “other gods”? Specifically, goddesses?

Patriarchy celebrates Exodus as a triumph of civilization. But these days I question the value of civilization, since it’s (we’re) killing the planet and perhaps our souls and minds as well. The popular myth, amongst anxious environmentalists like myself, is that Once Upon a Time humans lived in harmony with nature, gathering and hunting, attuned to the natural world through animism and reverence for the Great Mother. There followed a Great Fall: Agriculture, and its attendant sins of property, hierarchy, and slavery. With the plow we were expelled from the Garden, and things have gotten worse ever since. Genesis in a nutshell.

Exodus is a different angle. This time the Great Mother isn’t a nurturing Garden, but a suffocating oppressor. Man isn’t expelled; he escapes. All those (formerly) animistic spirits are now ridiculous and evil idols. The sacred snake becomes the demonic serpent. Nature and fertility become disgusting things to be controlled. Yeast – spores of Life in the very air – is loathed and mastered through the fetishized Unleavened Bread. This loathing and mastering continues today, as we continually kill Life in the soil with fertilizers, herbicides and pesticides. (My 4,970 miles of cycling mostly took place in Central Illinois, the heart of the agri-desert, where yesterday I rode past tanks of ammonia being dragged through denuded fields.)

What does Exodus look like from the point of view of the Goddess? She was in Egypt as Hathor, Hekket, Wadjet, Nut, Maat, Isis, and others portrayed already in Moses Goes Down. She was elsewhere in Mesopotamia as Ishtar, Astarte, the “Queen of Heaven” and other mis-named or un-named “idols.” She was in Europe. She was everywhere – all humans conceived the divine as female, long before the invention of the male God.

The Golden Calf (Return of the Goddess) from Nina Paley on Vimeo.

Watching Man walk out on Her, going forth from revering Nature to enslaving and killing it – would she even want Him back?

So I’m currently trying to articulate the Exodus from the Goddesses’ point of view. I hope it works. I’ve put a lot of effort into Seder-Masochism so far, I’d hate for it to be a BIG FAILURE WITH NO COHERENT STORY. Then again, I may end up with a coherent story that is despised. If my current storytelling angle succeeds, even more people will hate it, especially men. But that I could live with. Releasing a weak, incoherent film would be harder.

But this late in the game, that may be its fate – it’s up to the Goddess.

Analytic Chemist Needed

A few weeks ago I ran this comic at Mimi & Eunice:

I’ve long suspected that soy sauce could contain only small traces of wheat, so I did a little online research. Surprisingly, I found only one item that addressed the gluten content of soy sauce directly, and found it contains none at all:

Gluten analysis of two popular soy sauces
We sent a sample of soy sauce of the brands Kikkoman and Lima to an external laboratory to determine gluten levels. In both samples the gluten content was below detection limit of 5ppm (see report). According to a new European legislation, which will only be fully implemented in 2012, gluten-free foodstuffs should contain less than 20 ppm gluten. The FDA also proposes a limit of 20 ppm. This means that our two tested products may be considered as gluten-free soy sauce. link

The article contains a link to a lab report which appears to be Belgian. It’s strong evidence, but celiac organizations are still claiming soy sauce contains gluten, which leads trolls to leave furious comments at mimiandeunice.com and my Facebook page for daring to suggest otherwise.

I’d like to clear up the soy sauce confusion once and for all. A Belgian lab report makes one data point, but more data points are needed, especially because these substances may differ between the US and Europe. What I’d like is an analysis of several brands of American soy sauce, both conventional shoyu (derived from wheat ingredients) and “gluten-free” tamari. Also both fancy health food store brands, and cheap run of the mill supermarket kinds. What would really be helpful is a brand-by-brand chart the wheat-sensitive could refer to.

So, is there an analytic chemist in the house? A chemistry grad student? A biochem hacker space with time and resources on their hands? I’m certainly not a chemist, but if you produce such a report you’ll have my undying gratitude and whatever publicity I and Mimi & Eunice can muster. Also, you’d be doing good for the world.

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