The Witch of Endo, pt. 4: Surrender

No. I say to my doctor. In fact: Fuck, no. You can’t have my cervix. Let’s just schedule another laparoscopic clean-up. Go in, find the Endo, zap the Endo, and I’ll be home by noon. And it has to be early in November because I have travel plans.   

My OB/Gyn  has known me since I was 18, when I had my first surgery for an ovarian cyst. He does not take the swearing personally. Over the years, he has cut me open, soldered me up, held my hand. He’s the one who told me I was unlikely to have children. I have chronic pelvic pain and this is the guy who has to poke at me and ask me to describe the pain. I can be very descriptive. (The ultrasound tech his office once told me that he’d heard worse language from women on the ultrasound table than he had in his many years in the Navy.) Besides all this, my doctor respects my choices on how I live with and manage this disease. But when Urban comes up to the scheduling office so we can cram a surgery onto our calendars, Doc says to him: She made me a liar. I said the next time this happened, we were taking the cervix out. I said that the time BEFORE the last time. And the time before that! She’s not listening to me. You try talking to her.

You always did call me your problem child I say sweetly to the Doc, who I really am very fond of. He throws up his hands and walks off.

Ok, Toni, I turn to the surgery-scheduling lady, what’ve you got open?

We schedule the surgery for the second week of November. I’ll start getting back to work a week after the procedure. I’ll take it easy for a few weeks but it’s ok. I’ll have plenty of time to recover before heading to India for the holidays, so it won’t screw that up. I can live with this. I’m used to maneuvering around it.

On the way back from the appointment, I sit grimly in the car, gritting my teeth against the pain, absolutely certain I am doing the right thing. I will not have my cervix removed. My doctor thinks I’m insane. He believes that the Endometriosis has eaten into the tissue of the cervix and that these superficial solutions – going in with a laser and cauterizing the Endo on the surface of organs-- have outlived their usefulness. Whey they took out my uterus, it was riddled and veined with Endo (technically, once it eats into organs, it’s called Adenomyosis). I don’t care. I didn’t give a damn about my uterus: it was nothing but trouble and I wasn’t planning on using it anyway. Giving up my last ovary was angsty but not a hard decision to make, just a hard one to accept. But I will not have my cervix removed. Anyway, it’s a major surgery. I would have to be in the hospital for a couple of days, and it’s a longer recovery. I don’t have the time. I have a life, goddamn it. 

My last surgery was in January. I brood over this and watch the familiar scenery slide by on 394. I want to turn on the radio but I’m afraid I would snap the knob right off.

Instead, I review the facts with Urban, and ask him: What do you think?

It’s mostly rhetorical; I know I can count on Urban’s reassurance. But he is quiet for a long time. Then he says that he thinks the reason Gede told me to do the series of ritual baths (which I’m in the middle of) was to help me reach a more open emotional state so I could hear what I needed to hear, and accept it. (Huh? you’re wondering, Who said what? Ritual baths, wtf? Sorry, darlin…that’s a post for another day). He keeps his eyes on the road, but reaches for my hand.

I want to yank my hand away. This is not what I needed to hear! But I feel a truth in my body, in the beat of my blood, the vibrations in my pain seem to resonate a yes. He’s right. I shut my eyes and don’t say much. Urban drops me off at my sister’s, where it takes me all afternoon to talk myself into what I already know. My cervix has to go. I can’t keep putting it off. At this point, I’m just being stubborn.

The idea of this surgery terrifies me. I don’t know why. I’ve had so many other bits cut out, one at a time: appendix, gallbladder, left ovary, uterus, right ovary. I’ve had more surgeries for Endo than I can count.

But this. This.

 

It’s a pretty major surgery, since they are cutting out an organ. The cervix is the lower part of the uterus; sometimes it’s removed with a hysterectomy. Also, it’s connected to the top of the vagina (the cervix-bone connected to the vagina-bone!), where there are lots and lots of nerves; my doc says it may be more painful than the hysterectomy. So, yeah. Not fun.

And what if… oh, crap, what if? Some women have “decreased sexual function” (i.e. are unable to have an orgasm) after having their cervix removed. Of course, constant pelvic pain also decreases sexual function (duh) so my chances of having an orgasm right now are roughly 0 anyway. When I brought up this sucktastic, potentially life-altering side-effect with Urban, he said…well, sorry, what he said is private but let’s just say I’m not so worried anymore.

That leaves the worst, the real: what if this doesn’t help at all?

For all these years, this has been the last step, the one thing we could do if nothing else worked. Well, nothing else did work. We’ve tried it all: conventional, alternative, metaphysical. I’m better than I was before but it’s still pretty bad. What if I have this surgery but I don’t get better? One of the things Gede said is that I have to believe I can recover. Deep inside, I don’t know if I really do believe that. I’ve lived with this pain so long. It seems…inevitable. When I try to imagine or envision a life that is pain-free, I come up blank. I have vague images of being able to drive again, and ride my horse more often…but it seems suspect. Have I been holding off on this surgery because I’m afraid it won’t work?

Here I am, coolly assessing one of my organs and deciding whether to kick it out of the club of Saum. Trying to figure out what I’m really feeling. I talk to my sister all day. I talk to Urban all night. I go out to the barn and lean against Styx for so long that she dozes off. Then I call my doctor and tell him to schedule the whatever-the-medical-term-for-cervix-removal-is. I expect him to gloat a little. He doesn’t.

I hate breaking myself into pieces. I want to think of myself as whole, entire, not made up of disposable parts that can be excised and thrown away.

I don’t get any better at this. I WANT MY CERVIX. I’m not exactly sure why. But I do. It’s me. I’ve imbued it with meaning.It’s the part of me where the inside meets the outside. It’s one of my thresholds.  In sex, when so many other boundaries blur, this is where you becomes me. This is what holds me in. I feel like if I keep giving parts of myself up, it will all come spilling out: guts and organs, everything raw and essential. What will be left of me? This fear feels simultaneously terrifying and ridiculous.

I also feel failure. Aren’t I supposed to heal myself? Or something?

Maybe not. Maybe I’m meant to be unhealed and raw. Open wounds are passageways. Burden is a door. I feel like I’ve been braced in this threshold for so long. What am I holding on to?

I remember something the Doc said: Saumya, this is not something you did.

One of my other doctors (I have, like, a whole panel of them) once said: This disease has put so many limits on you, but you do so much. I’d like to see what you’d be capable of if you were healthy.

You know what? So would I. So would I.
Fuck yes. Let’s find out.

The Witch of Endo pt.2 : It only hurts when I laugh

*I know a lot more people are reading this blog, so be warned: I swear. And I’m crabby. If that will bother you, go away. For inspiration and non-swearing, read my HuffPo stuff or look at pics of kittens.*

It’s time for the unique Haas holiday held in January: SAUM’S SURGERY-FEST! Practitioners of this tradition explain that its purpose is to drive out the malicious spirit “Endometriosis.” In ancient times, it was celebrated several times a year, but modern innovations such as controlled diet and Cranio-Sacral therapy have reduced this once quarterly observance to a mere annual event. The surgery in a hospital is only the beginning of this holiday; the bulk of the festival is observed at home and goes on for a week or two. It is characterized by curtailing professional responsibilities and social interactions, imbibing analgesic narcotic substances, and taking part in activities resonant of childhood: eating soft foods, reading comic books, watching animated cartoons and being cared for by a responsible adult (Urban). This way, the whole Haas family can celebrate together! 

Ok I’m done trying to be funny. Here’s the deal: the Endometriosis is back, I’m in pain all the time, and I’m having surgery next Thursday: one day shy of a year since my last surgery. My goal was to make it a year. I know, I know…almost. It should count. But still. ONE FUCKING DAY! Come ON.

I have no reproductive organs left so how come I still have a reproductive disease? 

Actually, that’s not true. I do have a cervix, although they want to take it out. I’ve drawn the line. Leave my cervix alone, you bastards. It’s mine and you can’t have it.

So, it’s nothing life-threatening or even organ-threatening. We are just doing another laparoscopic clean-up surgery: I think of it as being vacuumed out, but it’s much cooler because there are lasers involved! I’m like a superhero!

All-Natural Cleaning Supplies

It’s no big deal: I’ve done it at least a dozen times. But you know what? It sucks. I have health insurance, an incredibly supportive husband who takes care of me, I won’t get fired for being sick (plus I don’t make any money anyway), and it still fucking sucks. Every time.

My body doesn’t give a damn what I do or don’t have time for. I resent this. You’d think after all these years I’d have gotten a little better at acceptance, a little more graceful. Nope. I bitch and swear and stomp around (well, I cant really stomp right now but I would if I could.) I listen to loud music and sulk. I stay up all night and worry. I draw: traditionally, this has helped. I try not to lose my shit. I breathe. But still…

I took this semester off to focus on work. I have a huge amount of paperwork to do to get my 501(c)3 (non-profit organization) off the ground, the Healing Center is opening this spring which means I have to start paying rent, which means fundraising—Headwaters/Delta has a grand total of $20 right now. I can’t afford to lose (at least) two weeks of work. But I’m going to and that’s that.

And don’t give me that “my sister had a laparoscopic procedure and went back to work the next day!” crap. Fuck your sister.

Hair-Metal Wisdom

The worst part of this? I don’t like surgery, but I hate needles. I HATE hate them. My veins hate them too. When I was in the hospital in 2002 (or 2003? it blends together), they wanted to put the IV thingy IN MY JUGULAR because my other veins were so surly and uncooperative. I was like…nope. Sorry, before that happens I’m going home and I’m taking my un-punctured Jugular with me. Figure something else out or find someone else to operate on. They figured something else out. I still have the scar in the bend of my elbow.

Luckily I have surgery frequently enough that everybody in pre-op at Abbott knows me now. It’s wonderful to be greeted enthusiastically by my surgery team (“Spending much time in New Orleans these days?” “How’s school?” “How are the horses?”) but it’s sort of depressing, too. At least when I come in, they know to get Scottie: Magic IV-Starter Dude. Scottie begins with a massive shot of Novocain in my arm so he is free to dig around without me shrieking at him. So, that’s not too bad.

Ok, I’m tired now & I’ve had enough of trying to hammer this out in a way that might be comprehensible to other people. I don’t know if I’m trying to be expository or descriptive or what. If I could tell you one thing it would be: the absence of pain after sustained pain is not the lack of something. Being-without-pain is a full feeling. 

When I come to after surgery, even through the immediate pain of having my guts yanked around, I will feel a gorgeous sensation which signals that Endo is no longer eating me from the inside. I will be free. It will fucking rock.

For a year, at least.

The Witch of Endo

The Witch of Endo, part 1

This just in: It’s really hard for me to ask for help. I’m sure you’re shocked.

I had a midterm due at the beginning of the week; I have been dealing with pelvic pain from the endometriosis and feeling crabby and useless. I had every reason to ask for an extension on my papers but…I felt like a loser. I didn’t want to ask. It was hard to admit that I *couldn’t* do it. I hate “can’t.” I hate it in myself. I would never judge another person who asked for an extension on a paper because it felt like their pelvis was eating itself (and, actually, with endo, that’s not far from what is actually happening) but oh no, not ME. I can do anything, dammit. Except I can’t. It was humbling to look at my notes strewn around me, books piled up, Word doc open and ready to go, and realize: I can’t fucking do this. I need to go to bed.

I have two choices when I’m in pain and have a paper/project due: I can grit my teeth and work through the pain, or I can take a painkiller and work through the narcotic haze. The pain pills work pretty well but they make it hard to focus, retain information and express myself coherently. In short, everything I need to write a paper.

I have learned the hard way that the pain will not just go away because I ignore it.  Ignoring it will make it worse. So although I am capable of working through it, I will pay for it when the work is done. Often that payment is more than I can afford and --listen to me! I feel like I have to justify my decision to not stay in pain. It’s a little excessive. I have such little sympathy for myself.

There is some crazy part of me that believes that if I wish hard enough, or do the correct breathing exercise, or stop eating dairy (for the record, I’ve tried: it’s bullshit) or something, this disease will go away. So if it doesn’t go away it must mean that I don’t want it gone enough. Some strange part of me thinks I should be able to wave a magic wand and make it all go away: some part of me believes I can do anything, so why can’t I do this? It’s like the dark, distorted side of empowerment. I’m always hearing how tough people are, they beat cancer, just fucking kicked it to the curb. I don’t even have a life-threatening disease and I can’t kick it out of my own way, never mind the curb. It makes me feel inadequate and weak. 

Now I know that makes no sense, but at the same time I don’t know it. I remember being at the pre-op appointment before my last surgery, going though the litany of diet, meds, everything from the previous few months, trying to figure out where I went wrong, when my surgeon, who has been my doctor, therapist, advisor and friend for the last 20 years (yeah, I’ve had surgery often enough that I’m buddies -–good buddies-- with my surgeon)-- looked up from his note-taking, waited for me to stop, then said “Saum, this isn’t something you did.” I burst into tears. Because I needed to hear it.

I don’t have magical powers (Or if I do, they’re not that kind of magical power, but only good for conjuring 80s power ballads and rain). What I do have is a disease with symptoms I can’t predict or control. I have issues with giving up control –- and, baby, it is allllll about giving up control.

I also have a TF who rejected my request for a 48-hour extension on my midterm but instead gave me 5 days... and said if I needed more time it was not a problem. I burst into tears then too. Luckily I was just reading an email so there were no witnesses.

Something else my surgeon said that day has stuck in my head: Men are stronger, but women are tougher. They are also tougher on themselves. I don’t know if that’s true, but it certainly resonates. I doubt that it has anything whatsoever to do with my gender, but I have high standards for myself: I push myself, I love a challenge, and I do stuff that I am afraid of doing. I don’t give up. I think those are all good things. But, I also judge myself very harshly. I would never speak to another suffering creature the way I speak to myself.

Sometimes I think I’ll never be enough for myself. I construct and overcome hurdle after hurdle: going back to school wasn’t enough, I had to get into Harvard. Getting into Harvard wasn’t enough, I had to maintain a 4.0…and ok I’ll admit it, there’s times that I think my 4.0 at Harvard is worthless because all the really smart people are over at MIT.

There is a part of me that, assuming I get an A in this class, which I will move heaven and earth to achieve, will feel like I don’t deserve it because I got an extension on my goddamn midterm.

It’s telling that while pain is part of my everyday life, it’s not something I’m comfortable talking about. It hurts everyday, and I don’t just mean physical hurt. I have not ridden my horse in over a month. I live to ride, and I cannot ride.

I have blogged about pain it in the past but it’s something I struggle to express. I avoid writing about it. I avoid talking about it. I’m not registered with the disability support office at school although I ought to be. Ignoring it doesn’t make it go away, but it does keep anyone else from knowing about it, from witnessing my vulnerability. I want to be tougher than I am.  I want a life that is miraculously free from “can’t.” I don’t want to need help.

But I’ve realized, while writing this, that needing is good for me (sorry, Buddha). It opens a part of myself that would otherwise remain closed. It humbles me and introduces another kind of empowerment: one that acknowledges that maybe I can do anything…just not on my own.

I titled this post The Witch of Endo, part I The “part I” is a promise to myself. I will keep writing about this. I will keep needing, too.

Thanks for your help. I appreciate it. I couldn’t do this without you.

Pain

This is about my relationship with pain, which has been my close companion for about 8 years now. It’s excerpted from something I wrote awhile ago for a relative who who was having painful health issues, to try to help them and their family deal with the ongoing crisis. One of the worst things about pain is how alienating it can be: most people don’t get it; how could they? Another family member, who is also a psychiatrist, recently asked if she could share it with some of her patients, so it’s edited to remove personal info. I hope it can help people.

When I am in pain, I am not rational. Pain distorts and amplifies every minor stress and moderate worry into insurmountable disasters. Thinking about the state of my lawn/inbox/whatever can reduce me to a hysterical frenzy at 4am. The worse the pain, the worse the irrationality. Telling someone who is in pain that they are being irrational is not helpful, though.

Pain makes me feel like I am going crazy. It’s a constant murmur/noise/shrieking in my head that can drown out everything else. It never really goes away, but it can be better or worse. When it’s not bad, it’s like background music; when it’s bad, it’s like being up front near the speakers at a packed, loud concert: I’m jostled around helplessly and feel it thump in my bones. When someone talks to me, I see their lips moving but I can’t hear what they are saying.

When I am in pain, all I want is for it to stop. I will say or do anything to make it stop. If moving makes it hurt, I will say or do anything not to move.

The same way an animal in pain will curl up and ignore everything, or bite out of reflex, I will either lock up and ignore or verbally lash out at my husband. I can’t help it. Pain kicks in adrenaline, and takes the “thinking” part of my brain off-line. The “reflex: fight/flight/freeze” part takes over, the same part that takes over in anger or other strong emotion. I panic. Everything feels like a threat I want to run away from, but the threat is inside and I can’t get away. There are times that I have banged my head repeatedly or pulled my own hair. Watching me be in this much pain is scary for my husband.

Pain is not just a physical thing. It is extremely emotionally traumatizing. When I am in pain, my husband has to be very gentle and speak very softly. If he is agitated, upset or loud, it terrifies me and I go into a panic (see above). When I am in pain, what I need first, MORE THAN ANYTHING is for my husband NOT to problem solve, but to come and gently put his arms around me and tell me he’s there with me and everything will be ok. Usually at first I yell back “No, it won’t be ok!” but after awhile I can calm down. Sometimes when he tries to hug me, I feel claustrophobic and push him away or yell at him; it’s again like being an animal in a trap. He might just hold my hand at first, then hug me. I need that comfort first, even just for a few moments. Physical contact is not just nice and cuddly; it also releases endorphins which alleviate pain and help me relax.

Because I am still in pain and not thinking clearly at this point, now my husband has to problem solve. That usually means getting me a heat pad & helping me position it on my abdomen (otherwise I will just sit there and hold it in my hands like an idiot), a pill and something easy to eat.

Now comes the waiting. The 45 minutes it takes for a pill to kick in seems like HOURS when I am in pain. I often start to panic: Why is it taking so long? What if that pill was a dud? What if it doesn’t work? Sometimes I work myself up so much that by the time the pill does kick in, my body is so tense that the medication doesn’t work as well. So relaxing while waiting, even a little, is important.

I HAVE TO keep my brain/mind engaged and keep those endorphins coming, or I just goes down the pain>panic>tension>more pain spiral. Sitting around in pain doing nothing makes pain WORSE. Sometimes I get so desperate that I get up to do something like the dishes, just so I’m not stuck on the sofa with nothing to do but feel in pain. If movement causes more pain, this is ultimately foolish! So, what to do?

1. Put on some not-too-loud music that lasts at least as long as it takes the pill to kick in. This gives me something to focus on. If it’s an album/mix I know, it also helps me to think: “by the time “Unstoppable” comes on, the pill will have kicked in & I’ll feel better. Only four songs to go!” I also put on music to help me get to sleep if I am in pain. It really helps.

2. Gently pet the dog. It is very calming and the quiet that surrounds animals is relaxing to me.

3. DO SOMETHING! I can never think of anything at the time, and I never think some stupid game could possibly help…but it always does. I have to do something uncomplicated that has a finite result in a short span of time. Small jigsaw puzzles, origami, a coloring book, acting out the bamboo forest scene from “Crouching Tiger, Hidden Dragon” with a bunch of cilantro and a couple of tiny devil ducks. If My husband can sit with me, easy games like Connect-4 or Trouble work too (he has to pop the Pop-O-Matic for me, which is always a little disappointing); sometimes he reads to me. Vague, open-ended things like just drawing don’t work because I have to come up with an idea. If my husband puts a piece of paper & pencil in front of me and says “Draw something” I just freeze up. If he says ”Draw a picture of our dogs in the small appliance section at Target shopping for an ice-cream maker,” that would work. My husband & I also play Dungeons & Dragons because it can last for hours, so if I’m having a bad night I have something else to focus on. TV helps, but only a little. The drugs I take give me headaches & nausea that get worse from the computer or TV. And sometimes it’s just too disorienting and confusing. Some Wii /computer games help too, but again, after awhile the glowing screen is just too much for me.

5. Talk to someone. If it’s late at night and my husband is too exhausted or has to work in the morning & I can’t find an awake friend, I call a crisis hotline. I was embarrassed the first time I called but it they were really nice, and it helped distract me.

When I am in pain, I swing between being brave & stupid by not asking for help, and demanding & childish by being very selfish. There is middle ground but it’s hard to inhabit. Pain makes me feel alone and like my husband does not care about me. I spend a lot of time feeling ashamed of not being able to tough it out, and of having to ask for help. It makes me doubt myself and feel weak. Getting through it requires faith, and not the religious kind (although my experiences the last 8 years have deepened my curiosity about the Great Whatever).

What I mean by faith is, it’s the belief that I will get better, that I can endure. Even when I feel trapped in an endless moment and can’t remember or imagine any other way of being, I have to believe that the pain will ease, it will pass. It’s the faith that although I can’t stop the pain from coming, I don’t have to keep it or own it or find some great meaning in it, I can just let it flow through me like water. It’s knowing that my husband can’t understand what I am going through and will say the wrong thing and act like a dick and walk away when I need him, he is still doing his best and I’m never alone. Even when he is not next to me holding my hand, even when we are not getting along, I am cradled in the home and the life we have made, and that life is real and true and funny and gorgeous. It’s the faith that I’m not alone, the pain will pass and I will still be here.

Our Lady of Morphine

Every time I go in for surgery, I say a prayer to Our Lady of Morphine, the Patron Saint of Pain Control, the Angel of Analgesics.

I drew this  self-portrait (ink and sparkly pen on recycled paper)sometime in late January/early February 2002, while in hospital in Dehradun, India, where I almost died. It’s where, raging with infection and gallstones, I would experience what the doctors called “episodes;” it always made me wonder why I was stuck watching this crappy show. It’s also where they fed me such large amounts of morphine that when I got back to the US, my doctors thought the hospital reports were loaded with typos. But, man, that pain was CONTROLLED!

I remember the Doc at Abbott—O, blessed Abbott, with your uniformed nurses, sterile gloves, and well-lit, pristine bathrooms-- looking at me incredulously over a clipboard and saying “You travelled commercial in this condition, while taking these doses? I assumed you were airlifted.” Nope. I was so out of it that my sister, standing in that 2 am fog outside of Delhi airport (mingled smells of jasmine, diesel and Jet A) had to gently steer me towards the bright airport doors;I was wondering off into the mist. She had to insist I get a wheelchair. “No, no.” I remember saying vaguely, “I feel fine.” The look on her face!

Changing planes at Schipol, sisterless, was a little more traumatic. I’ve had wonderful experiences in Amsterdam (who hasn’t?) but I’ve found that Holland, or at least it’s main airport, is not the most brown-skinned-people friendly place on the planet. I couldn’t get anyone to take my request for a wheelchair seriously. I wandered around, in tears, clutching my carry-on and a mysterious little ceramic house (it sloshed!) handed to me by the flight attendant in the First Class cabin. Ok, so I wasn’t airlifted but I honestly don’t think I would have lived through economy. I sat down, in considerable pain, self-pity and confusion, at a deserted gate, and started paging through my journal for my flight info. I came across Our Lady, and sat staring at her. Pills are scattered everywhere. Massive syringes drip. Doctors and nurses cavort. Our lady sits, serene, amid it all. I started to laugh.

I made it home, to encounter such wonders as Abbott NW Hospital, a husband nearly obscured by roses, a singing and dancing pig wearing a chicken suit, culture shock in the form of mac and cheese, and hippies in the basement. But that’s a story for another day.

I’ve had what I like to refer to as “health challenges” since then (I blame the pig). But just to be clear: the dimly lit, slightly grubby hospital in India saved my life. The non-uniformed nurses, who had a distressing habit of setting loaded syringes with unprotected needles down on my crowded bed-side table, would hold my hand and sing to me until the drugs kicked in. There are many kinds of pain control.

But also: when someone in my family is having a health crisis, we say: Hell, at least this isn’t happening in India.

I dug this picture out of The Grey Cloth Journal, April 12, 2000—February 15, 2002 –a big fat one, and a pain in the ass to lug around. But it’s a treasure trove of narcotics-inspired art.

Our Lady has been letting me down a little lately, so I thought maybe she’d like it here. Feel free to leave an offering.