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Posts Tagged ‘surgery’

hysteriaHysteria: A Surgical Fantasy was made for Dames Making Games Feb Fatale 3 Killer Interfaces in 2015. It is a part of a series of art works about my experiences as a patient. It was my first finished Construct 2 game, and my first controller. It is a crocheted uterus and fibroids, with a knitted endometrium layer. Fibroids are tumors that grow in the uterus. (Note: the Uterus is not to scale, but the fibroids are to scale.) Wire is woven into the fabric to create a giant circuit. It is a prototype based off the board game Operation with a tablet interface to view your score and ending.

Fibroids can be placed in various Velcro areas,  including pockets to represent my understanding of submucosal fibroids. I’m told that cutting the fibroid from the Velcro results in a very visceral sound that discouraged a few players because it was a little too much bodily horror.

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Players are given real surgical tools  (scalpel, hemostats and forceps) which are connected through wires to a Makey Makey. If the tools touch the wire woven into the uterus, it connects the circuit and the patient suffers damage, lowering your score and eventually botching the surgery. This game over is represented by a LEGO surgeon burning medical records in a recycling bin with the caption “This never happened.” The goal is to remove the fibroids while touching the uterus for the minimal amount of time.

The score is represented by a stop motion animation of red LEGO bricks which represent blood loss. 2016-12-28

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Your ending is determined by your score. The lower score, the better story scene, the higher, the worse scene.  All of the LEGO stories are from my heavy menstrual bleeding and fibroid treatment. These range from some of my worst stories, such as the image above which is about me trying to explain how much pain I am in, no one believing me, and my post op nurse telling me a joke to soothe me while I am hyperventilating.  It turns out I am resistant to painkillers and general aesthetic. I did tell the anesthesiologist this resistance runs in my family before my surgery, but I guess he needed to prove me wrong. I was painfully right.  Another is how the operating table was set up wrong when they wheeled me in, the earlier ones are typically times when my treatment was decent.

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(C/N – medical error, suffering helplessness, loss of bodily autonomy)

(I also use a bit of medical jargon to list procedures.)

I became fascinated with fibroid removal surgery when I needed mine out in 2012. I watched laparoscopic, open laparotomy, hysteroscopic surgeries. I was told about endometrial ablation, Uterine artery embolization, robotic surgery, hysterectomy,  etc. I wanted to pick the perfect surgery for me. A Fellow explained an open laparotomy to me, which I explained to him what I had watched and that it seemedsoopink a little too much with like a 10 inch opening.

The Fellow and I discussed that I didn’t want to use the fibroid shrinking drugs**. They make the surgery easier because the fibroids are smaller. I didn’t take them because short version: Bad side effects (depression, menopause, mood swings, increased sex drive, hair loss, hair gain, etc) and too expensive. The Long version could be an entire essay.

I picked the laparoscopic surgery as that is what my surgeon was famous for and it had the shortest wait time and recovery time. I was promised I’d be out that evening and back at work in three days. I felt like I had picked something that was good for me.

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But, the surgeon misrepresented what he did. He told me it was laparoscopic, with two incisions instead of three. He needed a bigger second incision for more elbow room, and I didn’t think the one inch he gestured was a big deal. He implied there was a second hole in the belly button for the camera, but there wasn’t or at least I didn’t find it. He didn’t switch because I didn’t take the shrinking drugs, he actually doesn’t do laparoscopic surgeries, whether he stopped because morcellation has fallen out of favour, I don’t know.  What he actually does is single incision mini laparotomy, which is closer to 4-5 inches, rather than the 1 inch we agreed on. ‘Out that evening’, really meant a two night stay, and back at work, well, I took two weeks off… Later I found he wrote mini laparotomy on all my records, but in the visits he always talked about a laparoscopic surgery.  A Mini laparotomy comes with a different set of recovery times and complications (it can be similar to a laparoscopic surgery), all of which I was uninformed of and was never entirely explained until 8 days before my surgery, rather than the three months when we agreed. His excuse was that it all was just an incision and I was making a big deal out of nothing. He told me he couldn’t give me an estimate for recovery or really any information because he didn’t know (this is when you drop your surgeon), I would apparently learn when I woke up. A nurse would tell me I’d need 6 weeks off, why she knew and he didn’t, I don’t know.

I had waited for 8 months due to various mistakes, I agreed to a surgery I didn’t want because I had 26 -28 day period (This means I had 2-6 days of non bleeding), where I would lose a liter of blood on day 2 and it would leak out of me for the other days. I was in constant pain because of cramping (as result of a mistake) which the fellow compared to a similar pain as labour. I was afraid I would die from blood loss if I waited longer. I already had mini strokes and possibly  two micro heart attacks from anemia, so worrying about dying or going into hypovolemic shock wasn’t illogical. I agreed to this surgery, because I couldn’t face another 8 months.  (I have a lot of thoughts on this, but those can be separate papers. )

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Actual advice I received from a GP.

But…

It was my body. I had the right to be informed about my choice. I wasn’t. That was taken away from me. It made me feel like my body wasn’t mine. My say, or my life didn’t matter. I don’t even refer to it as mine in the present tense, which means I still feel that way.

People argue with me about this and say well it saved you, so you should be glad. They helped you, you should be grateful. Doctor’s have stressful lives. “You are the 1%.”  I know doctors who yell at servers because they got the wrong salad dressing and I apparently should be grateful for having a surgery  that permanently changed my body that was misrepresented.  I should take solace that because it’s uncommon or unusual, it’s acceptable. I’m just insignificant collateral damage. Those thoughts weigh on me.

At one point I intended the game to be educational to allow patients to understand the surgery. To feel in their hand what was being removed. To see what had grown inside them. To be a participant in their healthcare rather than an unconscious non-person that their healthcare provider talks over or gives a lesson to their students rather than explain to person this is happening too. I’ve read a lot about shared decision making and patient engagement and I have a hard time believing it exists. This was an attempt to put myself as a patient back into a position of power where my body belonged to me.

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I use to be an engaged and excited patient. I wanted to see my own uterus. I wanted to see and touch those fibroids. I wanted to excel at being a good patient. I exercised and ate right to make myself healthy as I could be for surgery. In the beginning it was fascinating story.  The scientist in me loved the idea of medicine. I had surgical fantasies.  It was gonna cure me, and my life was going to be better. I don’t have that idealistic view anymore. What I didn’t know is that surgery changes you. Sometimes for the better, other times it’s for the worse, and other times it’s a lateral switch from one form of suffering to another. Healing doesn’t take six weeks, it can take months or years. Now I’m terrified of all of that stuff and deeply distrust medicine. The entire process drove me ‘mad’. I ended up with PTSD, which in the past was known as shell shock, or in women, hysteria…

Did it work? I’m still a bit terrified of my own creation and only recently started to negotiate possibly trying a new treatment, but I still don’t believe what the doctors tell me. I’m not anti-medicine, it’s just hard to trust people who have performed the wrong surgery on me, let me be awake, basically consistently offered the wrong treatment, humiliated and shamed me,  performed the wrong tests, breached my confidentially, appended my medical records,  fed me the wrong medication, etc and generally treated me like human garbage. As I have said on a committee, I’m not a success story, you don’t get PTSD because it went well.

I made this game an open surgery, so I could redo my own surgery over and over. This terrifies me and fascinates me. My hope was that eventually I could have the choice I didn’t get or at least reprogram my brain to not think about it all the time. That maybe if I was better fantasy surgeon I wouldn’t have all the side effects I have now. If I was better imaginary doctor, I wouldn’t have been awake.  That I could finally have power over my own body and so I could finally see the thing that caused me so much suffering. And maybe if I could trust someone else do it, that maybe one day I could get the correct surgery.

 

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I’m still unimpressed by the medical students and doctors who don’t know what a menstrual cup is and seemed to be grossed out by the idea of it.

** I didn’t get a hormonal IUD either because first I was told it would save me from surgery, I was stupid to want surgery, they wouldn’t do surgery on me, then I was told the IUD wouldn’t do anything, that I needed surgery, surgery was my only option,  and that they didn’t put IUD into childless women, and then again told I didn’t need it, and then told later I really needed to get that IUD (all of this from the same office by the surgeon and one of his residents)…. it’s hard to make a decision when you get conflicting information.

 

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It’s been awhile.  It’s not art or games, but medical.

I finally got some good news this week that I will receive surgery, an abdominal myomectomy for uterine fibroids,  in March of 2013.  I’ve been in and out of doctor’s appointments, hospitals, and testing facilities since March of 2012. They’ve known what was wrong with me since the end of May. However, a little side misadventure (that’s putting exceptionally lightly; worst nightmare and traumatizing  only begins to describe that arc of the story) caused many delays. A big weight has been lifted from my shoulders. Yes, surgery is probably going to be scary, but it should end my suffering so I am happy to finally let someone cut me and stick their hand in me to remove my problem.

That’s what I’ve been up to. I intend to write an article (or several since a lot has gone on) on the entire affair. It’s been a strange odyssey of chemical changes, emotional roller-coaster ranging from awe, resounding joy and crippling depression, as well as my amazement of what the body can do.  I was beginning to feel like a character on Coronation Street, in the sense that nothing was going right and new problems kept arising like any good soap opera. I kept asking friends: “is it suppose to be this hard to get fixed?”

Since my health is significantly better I’ve taken up yoga, to help ease the stress, and I’ve been pushing myself at the gym to see how ‘healthy’  I am. In October of 2011 when I started jogging again (I’ve been jogging since I was about 12) I would start to blackout after about a minute and half of sprinting.  It was one of the reasons I booked a physical with my brand new family Doctor. Getting a GP was the best thing I ever did. The other reason was constant migraines that were similar to strokes (blindness, numbness in the left side of my face and arm, as well as a typical migraine aura). Turns out they weren’t migraines but mini strokes (not brain damaging ), because I didn’t have enough blood getting to my brain. How many people can say they still gave lectures on art history while having mini strokes? Not many.  I don’t recommend it.

In March of 2012, I was diagnosed with severe anemia- Hemoglobin 60 (should be 120-140), iron 2 (should 65+).  The medical residents loved me because I don’t look anemic, and I should have been unconscious rather than jogging. Anemia is a symptom of my actual illness, which wasn’t diagnosed until late May 2012. I had tried to get the problem solved in 2006 and 2007, but walk-in-clinics (I didn’t have a GP) don’t seem to be equipped to handle that or think that blood pouring out of me wasn’t at all a serious problem. I didn’t even get a blood test or sent for a pelvic. I guess I’m just a hysterical woman who couldn’t possibly observe that her cycle changed. I should have persisted back then to get it fixed, but I can’t stand people who don’t listen to me, use my clinic visit as an excuse to scream at me because I don’t like hormonal birth control and therefore automatically assume I am idiot.  (I imagine the nurse who screamed at me dealt with a lot of young women who have no understanding of their body.  Unlike me, who researches everything.)  Though, my surgeon has mentioned that I am maybe a little too smart. (Happens when you read  a lot of your surgeon’s published research) :P I’m an oddity because I researched what was wrong with me so I could make an informed decision. I even watched the surgery, an extreme case, but it showed what I needed to know. I’m stunned that other people wouldn’t. It’s my body, why wouldn’t I have a narcissistic interest in what’s going on?

The anemia, scared me a wee bit, so I stopped pushing myself.  I would go for walks instead because I was frightened I’d pass out. Even though I received four iron IV infusions and brought all my levels up to normal and made me feel superhuman, there was still that fear.

Three weeks ago I started in the gym and I started to test how far I could go. I started very light, because I was still afraid I’d black out. Each time, pushing myself a little more. So far,  I can go for 55 minutes, and get 8.35km (5.19 miles) done on the elliptical. I cheered in my head with glee “I’m not blacking out!!” It’s a big relief to be able to do things and not blackout.

This is a highly abridged version of what I’ve been through. I’ve slowly got my  health in order and reclaimed my brain, since for a long time it wasn’t getting what it needed.

Morale of the simplified version story. Get yourself a good family doctor. They’ll save your life.

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