Sunday, October 4, 2015

A Hysterectomy And Some History

It's been 12 days since I last had a uterus.

Last Tuesday I had a hysterectomy. It's been a challenging, emotional, and painful experience. I had it because I had to. Well, partially had to. It turns out I've been carrying around a 5 pound fibroid for who knows how long and my uterus had swelled to the size of a 7 month pregnant uterus. My doctor told me that as soon as they removed it, they noticed how the shape of my belly changed. And when I was finally able to stand up again and see myself in the mirror. I noticed it, too. I had been walking around looking like I was 7 months pregnant. Sure, I still have my belly, but things have definitely smoothed out. So weird.

I say I only partially had to get the hysterectomy as my doctor thought maybe they could get the fibroid out and save the uterus. It would be more difficult and bring other challenges, but it was a possibility. But since I've never wanted kids and despise my period, I told her just to take it. So they did. I'm left with my ovaries and cervix (they too the fallopian tubes, too, as they are the highest cause of cancer so might as well get rid of them, too).

The weeks leading up to the surgery were terrifying. I made sure to keep myself busy. I played a lot of shows, went to a lot of events - just to try to keep my mind off of it. But every night I couldn't help but think about the fact that I had to get surgery. Not fearful of losing the uterus, but of getting surgery itself. I'd never been under anesthesia. I didn't know what to expect. I just wanted the date to hurry up and get here so it could be at the point where I was waking up from surgery and I had, in fact, woken up from surgery and that I didn't have some horrible experience where I woke up mid-surgery. I just wanted to be done with it.

Because I didn't like my uterus and all it brought to me. I never had. From my very first period to my last (which reared its ugly head two days before surgery to take that last bit of dignity from me and force me to have to wear hospital provided mesh panties and a pad going into surgery knowing the nurses would have to deal with the outcome.)

My first period came the day after 5th grade ended. My dad and I were living with his girlfriend (my mother died when I was 6 years old). I hated my dad's girlfriend. She was a such a bitch. Truly, truly a bitch (she once burned my clothes in the fireplace because I left some on the floor of my room - which was in the basement. She was a bitch). I went to the bathroom and there it was. I started bawling and ran to my dad, who was perched on top of the garage painting window trim on the house. I couldn't get the words out, but I didn't have to. He guessed right away. I have no idea how we knew. He told me to go tell Vicki. So I did. She threw some maxi pads my way and that was that. No explanation. No talk. Just a "here - take these." And so begun my menstruation.

It was always terrible, my period. Constantly heavy and clotting. I had accidents all the time. I lost so many pairs of pants to the terrible red stain. I could not fathom how girls could actually go swimming with their periods. Friends would say, you'll be fine! I do it all the time! But not me. It was not possible.  And there was no way I was going to risk that huge of possibility of public humiliation. Cramps were terrible and would leave me in bed curled up for hours. My uterus had it against me from the start. I couldn't wear tampons. For one, I had no idea how to wear them at first. No one told me and the box was confusing. But two, my period was just too heavy. They just didn't last long enough. All my friends wore tampons and I always felt out of place. Different. Dirty. All my life I've heard women make fun of pads and it's been hard. I've felt ashamed. Like I'm some sort of ogre. You'd think women would be more sensitive to other women's menstrual needs. But they're not. So I would play along like tampons were my feminine hygiene product of choice. But they never were.

When I reached my early twenties, my period calmed down a bit. Most likely due to the fact I had just moved out of the house and was broke and never ate and was a vegetarian and smoked a ton of cigarettes and lost a ton of weight and it all screwed with my cycle. I was able to use tampons for a while, but they were never comfortable for me. They didn't seem to fit. So I returned to my trusty pads. And as stability returned to my life and I got a job and ate regular meals, my period returned in all its glory. It took a few years, but it came back full force.

Over the last 5-6 years, it'd become unbearable. Planning vacations became increasingly difficult as the fear I would have it would worry me as it could easily ruin a vacation. I can't even walk the dog the first few days of my period, much less wander the streets of Montreal with any ease. This spring, as my friends were all planning a trip to the Eaux Claires Music Festival, I had to wait and hope they didn't sell out until about two weeks before the date because the last thing I wanted was to be stuck with my horrible period at an outdoor music festival with only a sea of port-a-potties to save me. My period has always been on time (minus a few occasions) but it always seems like my calculations would be off as soon as an event rolled around. It always seemed to appear.

There was a 3 month period a few years ago when it lasted 2 weeks at a time. It was hell. I went to the doctor and they put me on birth control, which cut it back down to 7 days, but didn't make it any lighter. Eventually, I stopped taking it.

I had an abortion when I was 20. Not my uterus's fault, technically. But a few days before the procedure, I was sitting at home and went to the bathroom and there was a ton of blood. I thought for sure I had a miscarriage. But, nope. Just my lovely lovely uterus doing what it does. Being a fucking nightmare.

So, flash forward to July 2015 and I'm told I'll need to get a hysterectomy. I took it calmly at the clinic and listened - and nearly passed out - as the doctor explained what was going to happen. When I went to my car, I sobbed. Just completely broke down. Partially out of fear of having to get surgery, but mostly about the idea of losing my uterus.

Like I said above, I've never wanted kids. Kids and me just don't mix. I don't know what to do with them, how to talk to them. They bring out the worst of my germaphobia. The screaming and crying. The constant need for attention. I have a dog and a dog is all I can handle in that department.

But it's something different when the narrative changes from "I don't WANT kids" to "I CAN'T HAVE kids". I'm now someone who cannot conceive a child. I'm that person in those conversations. If I tell someone, they will pity me. "Oh, I'm so sorry." Growing up having to hear that every time someone asks me about my mother - it gets old so fast. Now here is another thing.

And I couldn't help but almost laugh at the onslaught of child related things that went on in my life leading up to the hysterectomy. My friend had triplets. Just two weeks after learning I had to get a hysterectomy, she gave birth to surprise triplets. Baby news everywhere!

In the two weeks leading up to my hysterectomy, I brought food to my triplet having friend, attended another friend's baby shower (which meant I had to shop for baby stuff), had a coworker announce her pregnancy, and watched my Facebook feed fill up with picture after picture after picture of first days of schools of countless children of family and friends. And I'm so happy for them all. I truly am. But, I felt like the universe was making me question everything. I tend to not get to involved in the lives of the children in my life, but suddenly I felt like it was all babies all the time. It was hard to deal. As much as I was trying to avoid thinking about they upcoming hysterectomy, events in my life wouldn't let that happen.

And now, here I am. Twelve days since I last had a uterus. It's been incredibly taxing in ways I did not expect.

My surgery went well. Leading up to it, my doctors kept telling me everything should go swimmingly as I am completely healthy. How that is possible, I have no idea. I eat terribly. I'm overweight. I drink a lot of beer. But, I guess I'm healthy. Goes to show weight isn't an indicator of health.

I cried the whole time before surgery. Because that's what I do. I cry. My husband waited with me in the pre-op room while I changed into my hospital robe and my mesh underwear and everyone from nurses to my doctor to the anesthesiologist - everyone on the surgical team - came in and hooked me up to things, checked things, brought me forms to sign, asked me questions, made me recite my name and birthdate over and over - and then they wheeled me away. I said goodbye to Matt and they wheeled me away.

I was so pleased to see that the entire staff working on me were women. For some reason, it feels like they know the parts best and so they will know how to take care of this best. Not fair to male doctors, I know. But whatever. In fact, the last thing I remember saying before going under was telling them all how awesome it was they were all women and how I work for a show that aims to get girls excited about careers in STEM (science, technology, engineering and math). Literally, I said those words, as I was looking up at the stark white walls and ceilings and the very bright lights, and I saw the gas mask thing over me as she was about to place it over my mouth and then I remember nothing else.

The anesthesiologist told me that they would turn the anesthesia off 15 minutes post-surgery and everyone would start to talk to me and say my name and that I should try to respond the best I can so they know I'm awake.  Even if I can't open my eyes, I should give them a thumbs up - whatever I can.

I have no recollection of this. But I must of done something because I woke up in the post-op recovery area with a nurse by my side and all my stuff. She gave me glasses so I could see. And the first thing I noticed was that my right hand was completely numb. It felt like it had fallen asleep - hard. So the first thing I remember saying when I woke up is that I couldn't feel my right hand. Then I fell back asleep.

I woke up to them transferring me from the recovery bed into the bed in my hospital room (my private room - thank goodness). Matt came in shortly after. All I cared about was that I couldn't feel my hand. It was my right hand. I'm right handed. I play guitar. I NEED my hand. I was told it was probably placed funny or something got pinched from the blood pressure arm band and that it should come back eventually (it did - finally - after about 5 days). It was the first thing about post-surgery that I was not expecting that has caused me much anxiety and frustration.

Besides my hand, I felt pretty good. My head felt clear. Abdominal pain was minimal. I was in fairly good spirits. The staff at the hospital were great. Really top-notch, kind people.

They made me try to sit up that first night. They told me I would have to get up and use the bathroom the next day so I had to get moving. I was currently hooked up to a catheter. That was my first realization of the kind of pain and difficulty I was in for. Getting up from a laying down position was the worst - and still is. It is so hard. You use every muscle in your abdomen doing that. So I managed to sit up. They wanted me to stand, but I couldn't. I was too lightheaded. I had lost a little more blood than I should have during surgery. The mass was so big and my uterus so swollen, my doctor told me she thought she would have to do an up down incision over the top of the belly button to get it out. But, I guess when they actually got into the OR, she decided she could get it out with the standard "bikini cut". It's a much more pleasant looking incision that way and is easier to hide. So she went for it and it went fine, except I lost a little more blood than planned. So I was dizzy sitting up.

The first night at the hospital I slept in 20 minute intervals as I was on an hourly check up schedule. I was even hooked up to a blood pressure arm band that would automatically squeeze my arm every hour. Temperature takings. Pill taking.

The one nice thing was they had these massager things around each of my calves so the blood in my legs didn't clot from non movement. Those things were awesome.

The next day they had to take the catheter out. I had been wondering how that would work out. They wouldn't just pull it out, would they? There must be some way to get it out....nope. They just pull it out. I can't even think about it now without cringing and wanting to cry. That was terrible. But, it was the one thing that forced me to start working on sitting up because if I didn't go to the bathroom naturally, they were going to have to insert it again and, yeah..nope. That wasn't going to happen.

I managed to get up that day and stand and use the bathroom. Peeing was so weird. They told me it would move slowly and it really did. Not to get into too much detail, but yeah, it was weird. It didn't get normal until a couple of days later. Something else I wasn't prepared for. Also, on that same note, I couldn't really take care of the after business. It's amazing how much your pride just goes away when you can't properly use toilet paper by yourself. I had to have a nurse help me. And, bless her, she did and, yep, that is something that happened.

She also showered me on morning #3 at the hospital. I hadn't showered since surgery morning and I was feeling pretty blech. But I couldn't do it alone. So I stood there. Naked. While she washed me down. And, though my pride was on the floor, like with the bathroom thing, it was not as bad as I thought. My dad is currently in a nursing home and used to say to me as he aged that if he ever got to the point where people had to help him use the bathroom to just shoot him. But, he's there now and he's fine with it. Life is funny that way, I guess. It's good to know that when/if I get to that point, I'll probably be okay with it.

I hadn't really eaten anything since the night before surgery either. I had some cantaloupe and grapes on  Night #1 at the hospital, but that was it. My appetite was nil. Another thing you don't think about before  surgery is that the narcotics completely fuck with your intestinal system. I couldn't do what I needed to do for 6 days. It was not good. And it was not good for 4 days after that. And it's kind of not good again. And that's all I'll get into with that.

I went home night #3. They told me I had to go for 4 walks around the hospital floor and eat 3 meals before I could leave. So I did that. I was still terrified to leave. I'm such a hypochondriac worrier panic attacker anxiety haver that I knew any little thing that felt weird on me when I got home would send me into a fit. There was safety at the hospital. I was surrounded by people who were medically trained and could save me if need be. But I went home.

Matt, my husband, has been absolutely wonderful. I am a very lucky woman. Getting into the car that night, and the ride in the car and going over potholes and getting out of the car and up the front steps and onto the couch and dealing with my incredibly sweet dog who was very excited to see his mom again but was not allowed to give me a hug like he normally would - it was a lot. I was very scared.

Everything is uncomfortable. Sleeping is the worst. It makes me so sad because I love sleeping. I can only sleep on my back, which is not natural to me. I like to curl up in the fetal position and wrap the pillow over my ears. But I can't. So instead I lie on my back and stare at the ceiling and listen to every sound happening every where. I've taken to sleeping with my headphone on and listening to music just to try to distract myself. It seems to work.

But, I still can't get up from a lying down position without much pain and difficulty. Matt helps me, but at times I have to do it by myself and it is excruciating. And I wake up all night long with horrible pain in my shoulders. I don't know why this is. But they really hurt. And my arms go numb. Just from lying on my back. It's weird. And my stomach, when lying down, feels completely detached from me. I wake up and it feels like I'm wearing a fanny pack or like a cat is sprawled across sleeping on top of me. My whole belly area near the incision feels numb. Like it doesn't belong to me.

I've tried sleeping in my bed a few times, but I cannot get out of it without help and sometimes, even though Matt will gladly help me, I want the independence of being able (even though it's still difficult from the couch) of getting up in the middle of the night to use the bathroom if I have to. Or to take some pain meds. So it's the couch until I'm healed.

I just started taking showers by myself again. When I first got home, Matt had to help me undress, help me get in the shower, and then stand outside and hand me shampoo, soap, etc since I couldn't reach down to get them. Then he had to help me out of the shower, help me dry off, and help me get dressed. This is probably the best argument for marriage I could possibly give. We have been together for 15 years. This is not something I thought he'd ever have to help me with. But here we are. And even though the helplessness and embarrassment of the situation brought me to tears every time, he was there holding my hand and trying to make me laugh. I love him so much.

But I'm able to shower on my own now and I can mostly undress and dress myself again - except for socks and shoes. I can't quite bend over that far yet.

I spent my first week home alone. Matt had to go back to work and it was just me and Robbie Dog. That poor dog. He totally knows something is wrong with me. He's been very gentle and sweet. But he's still a dog. And usually when I'm home during the day, we go for a walk around lunch time or he at least gets to go outside for a bit. But I can't do those things. So every time I get up to go make lunch, he runs to the back door and paws at it and stares at me and I feel terrible. But I couldn't bend down low enough to hook him up to his tie-out. Let alone reach his tie-out which is usually laying on the back patio floor. But this weekend, my bendability has increased a bit and Matt came up with a contraption to hook the tie-out onto which means tomorrow I can let him out during the day. Thank goodness.

Yesterday was a big day for me. I left the house for the first time since the hospital and went with Matt to the grocery store. Then later, we took Robbie Dog up the block and back for a short little walk. It's crazy how tired that all made me. My legs were tired. But it felt good to get out and move. I felt like I might actually get through this.

But then I had a terrible night's sleep. Through all of this recovery time, I've had a bad pain on one side of my abdomen. A pinching. It's not constant. But it hurts the most when I do things. The other side has felt fine, for the most part. But this pinching. It keeps me from being able to bend and move better. I've felt like if it wasn't for that, I'd be much further along.

So last night, I tried to sleep in bed. I was lying there on my back, staring at the ceiling, trying to ignore the pain in my shoulders, and my stomach was making all sorts of noises. And then I felt this throbbing that wasn't like a gas pain or anything. Just this sort of pinging throbbing in my upper right abdomen. I got up (with Matt's help) around 3am to use the bathroom and take some meds, and when I walked back into the bedroom, out of nowhere, I felt this ripping like sensation on the left side of my abdomen right along the incision line. It felt like taking out hair with a tweezer, or ripping off a bandaid. Except it kept happening in the same spot. I hadn't done anything strenuous. Just walked. I managed to get back into bed and the weird feeling kept happening. And in my crazy brain, I imagined my incision was ripping open. Even as I sit here now, I've felt it a couple of times. These random pains keep happening and it's frustrating because I don't know if they are okay or not. I could call my doctor, but if I called for every little thing that I've worried about over the past 12 days, I'd never get off the phone.

Matt got up at 6am and I moved back to the couch, where I'll probably continue to sleep until I'm healed, unfortunately.

Through all of this, I keep thinking about how I just wanted to get the surgery over with. I had no idea recovery would be this taxing. I knew it would be hard. But it's just the little things. Not being able to reach something on the bottom of shelf of the refrigerator. Or put on socks by myself. Or lie down by myself.

I haven't played guitar in so long. I realized on Friday that I haven't even sung in over a week. Not even to myself. Matt had taken Robbie for a walk and I decided I would pace the hallway the whole time they were gone just to see if I could handle moving that much for that long. A song came on the radio and I started to sing along and it hit me I hadn't sung at all since before surgery. It made me sad. I feel so far removed from my regular life and I'm currently at the point in the recovery process that I can't imagine getting back to it.

My dear friends have a co-birthday party coming up on the 16th. I'll be 3.5 weeks past surgery at that point. I should be back to work by then. Will I be able to go celebrate with them? Will I be able to laugh heartily and drink some beers and enjoy life? Right now it's really hard to imagine that will be possible.

And work. I'm honestly excited to go back. I've been so bored. One can only watch Netflix for so long, I've discovered. But it is a trial getting to my desk. It's really far away from the main entrance. I'm envisioning myself shuffling down the long hallways past all of my coworkers while I wince in pain but try to smile. I'll have to bring my lunch - and one that needs no refrigeration or heating up as there is no way I'll be able to either get to a kitchen or a restaurant.

It's just hard to imagine being normal again. I put on a bra for the first time in 12 days yesterday. It felt wonderful. I can't even imagine getting up and getting ready for work and putting on an outfit and my contacts and make up. I have all these new clothes that I've barely worn. And now I have a new belly and I'm excited to see how they look now. But I can't imagine actually being able to wear them with confidence.

When will I be normal again?

It still hurt to go over pot holes and speed bumps in the car ride to the grocery store yesterday. How will I drive to work?

This is all still, at least, 9 days away. But I feel like I haven't come very far in 12 days. So I'm nervous and, as always, scared. I guess I'm showering and dressing myself (for the most part). And I can sit down and stand up with relative ease. And I can start letting the dog out again. All of these things are improvements. But overall, I still feel so unable.

I have my first band practice scheduled for October 22nd. I am so excited. But, will I be able to lift my guitar? It's pretty heavy. I just want to play it again.

We have our first show back scheduled for December 19th. That is so far away from now, but still I wonder how I will ever be able to perform again. Right now, these things seem impossible.

I just want my regular life back.

The doctor told me, since they left my ovaries and my cervix, that I will still technically have my menstrual cycle. I will get PMS and hormonal. I could bloat. And there might even be spotting from vessels in my cervix. We have a vacation planned at the end of February. We're going back to London and also taking a train up to Scotland. I wonder if the ghost of my uterus will strike with horrible bloating and PMS at this time. It will, obviously, never be as bad as it was. It was the bleeding that was the worst. But even after all of this, all of that stuff will still happen. But hey, no bleeding and no risk of pregnancy.

Well, I've been sitting for a while. I should probably get up and move. Pace the hallway. See how that goes. Maybe take the dog out. I have to do these things to get my life back.

I just want my life back.

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