Exile From Hysteria

When a hysterectomy is not the ending, but a beginning.

Category: Post-Op

Road to recovery

Most days now, I don’t even think about my hysterectomy.

It’s as if I’ve almost forgotten this huge portion of my emotional map. The reminders come as I notice my pants are too snug (residual inflammation sweetly nicknamed “swelly belly”) or I reflexively pull back from a sudden muscle twinge deep within.

Life has moved on, carrying me in tow.

Two weeks ago I returned to work. I’d say it was a smooth transition. Still, I find myself completely tapped by 3:30 p.m. I know this will improve with time.

At my six-week checkup, my surgeon declared me well on the road to recovery. The only outstanding piece of business were two stubborn stitches that remained in my vaginal cuff (where my cervix once was). She cheerfully told me to hold off on sex for two more weeks.

She also cleared me to start working out again. After the surgery I lost 7 pounds, but then swiftly gained that and some extra. She told me to slowly build up my weight lifting, and to trust my gut when determining how far I can push myself.

After I thanked my doctor for everything — the accurate diagnosis, the skillful surgery, the kind bedside manner — she surprised me by saying this most likely would be our last meeting. She encouraged me to get pap smears (yes, I’ll still need those!) with my primary care physician, along with my breast exams. If I really wanted to see her, that would be fine, but she made it clear there was no reason. This made me sad. She had guided me on the toughest medical decision of my life.

I looked her in the eye and said goodbye.

The doctor soon stood up and grabbed my chart. My instinct was to pull her in my arms, and hug her deeply. But instead I watched as she opened the door, smiled and walked out.

Most days now, I don’t even think about my hysterectomy.

Except today.

And I’m grateful for the experience. Every bit of it.

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Post-op blues

I’m entering week five of recovery feeling a bit beat up.

The high-energy enthusiasm that carried me much of my journey (both pre- and post-op) has abandoned me.

I’ve been fighting some form of depression that has left me uninspired and mentally exhausted. And the pain in my lower right back has returned, with gusto.

Overall I have made great strides. My abdominal incision from the hysterectomy has closed beautifully, and I’ve built up my strength to the point I’m now able to walk respectable distances.

Still, something feels out of whack.

It could be as simple as missing my morning lithium dose a couple times last week. It could be that my constant companion/boyfriend has returned to work. It could be that all my lady parts are missing.

I made an appointment to see my psychiatrist next week, so I’ll let him chime in on the situation.

It appears I have a case of the post-op blues. This has to be common. So much change. Such a huge buildup. Then nothing.

Literally.

I struggle with the fact the date came and went for my scheduled period.

My heart races when I watch a storyline about a woman getting pregnant, then it plummets to my stomach when I realize I’ll never feel a baby inside me.

The sadness at times is intense, and haunting.

I get nervous about any emotional changes because I am bipolar. I have known about this diagnosis since I was 26, and work very hard to keep my emotions in check. I like to brag that my psychiatrist calls me “highly functional.” So anytime things feel askew, my anxiety level rises a bit.

As easily as these emotions wash over me, I know they will fade. I’ve got to give myself some time. And no matter what, I need to keep moving.

Baby steps

Wearing jeans never felt so good.

After spending almost three weeks in nightgowns and sweatpants, I have managed to squeeze into my jeans.

By the end of the day, I slowly unzip them, to give room to my swollen belly. From my research, “swelly belly” is common in the evening hours after a hysterectomy.

Each day I measure my success in baby steps.

Now that the doctor gave me permission to increase my walking, Matt and I have decided to go on one field trip a day. It’s about all I can handle, and it helps to do it early in the day. Usually these trips are simple, such as going to the local grocery store to pick up a couple items for dinner.

Yesterday I broke through to a new accomplishment. I walked the entire distance of Costco without getting dizzy.

I had found myself getting woozy anytime I walked further than from the recliner to the loo. But  not yesterday. I made it from the entrance to exit, just as focused as when I arrived.

Unfortunately, I am now paying for my bravado.

Last night I noticed a burning/pulling pain in my groin. By the time I woke up this morning, the pain was still there. My mind went berzerk. Is it recurred endometriosis? A blood clot? A hernia? After a panicked call to my surgeon’s nurse, she told me I pulled an abdominal muscle.

So for now, I’m grounded. No more stairs, and I’m taking it easy. With all this walking stuff, I had gotten cocky. Today I had planned a full day, including a trip to Kinkos, Costco, Kohl’s and Petco. What was I thinking??? Instead I will stay in my jammies and watch some bad TV.

Anyway, I want to rest up. Tomorrow we are adopting a cat. Her name is Cora, and she has 25 toes.

Day 14: Post-op appointment

Matt was good enough to escort me to my two-week post-op visit this afternoon.

I swear I didn’t know about the pelvic exam, honey. Sorry about that. You were a trouper.

Well, the good news is that everything — from the 9-inch incision to the stuff under the sheet — looks great!

The surgeon told me to schedule an appointment four weeks from today to recheck my progress, and make a decision about my return-to-work date.

I was happy to report that I completely stopped all painkillers. I started weaning myself from the narcotic about a week ago, then conveniently developed a nasty allergy to it a couple days ago. I switched to motrin for aches, then nothing.

The doctor told me I also could stop taking birth control pills and a medicine my family doc prescribed when we thought I had a gall bladder problem (during my hysterectomy the surgeon discovered that pain actually was endometriosis that was high in my abdomen).

She also gave me the OK to start walking short distances, and to work on strengthening my endurance. I’m now allowed to bend/squat/twist as long as it feels OK to do so.

I just about cried. Finally I have permission to walk outside the confines of my front room, and to even accompany Matt on trips to Kroger. Shopping for eggs never sounded so luxurious.

Matt and I decided to celebrate with a walk through Costco. I was ecstatic because it was my first major walk since the surgery. I walked by the greeter, my heels bouncing. I strutted through the veggies, tables of folded clothes, pallets of toilet paper.

I made it all the way around to the grain aisle, before I felt the floor shift. I had to lean against the shopping cart and collect myself. Matt got me to a table in the refreshment area, then got me a soda. After a few sips, I felt myself pulling together.

Sheesh. All the bravado in the world couldn’t have prepared me for how exhausting that walk would be.

Shortly after we got home, I was visited by a wonderful colleague who brought with her a lasagna (her mother’s recipe!). It was great seeing a familiar face, and catching up on the things I’m missing at work.

In the last two weeks, Matt and I have been blessed with visits from several of our friends who have brought meals and great conversations.

We can’t thank you enough, especially in this first crucial healing period when it was nearly impossible for either of us to get out of the house.

Asking for help was difficult for Matt and myself; accepting it seemed nearly impossible.

But one by one you broke through to us, in your messages, your phone calls, your couch-side chats.

We want to thank each and every one of you for proving us wrong.

Accepting help never felt so good.

Beyonce, and the meaning of motherhood

Beyonce unveils her baby bump.

Beyonce unveils her baby bump.

I really wanted to like Beyonce’s docu-performance “Life is But a Dream.”

My girl crush was unveiled Superbowl day when I spontaneously started snapping and bobbing my head in time with Beyonce as she belted out “Independent Woman (Part 1)” and “Single Ladies.” Matt marveled.

“I didn’t even know you were a fan,” he later whispered in my ear.

Between the Superbowl and Beyonce-gate (her dynamic lipsyncing of the National Anthem at President Obama’s Inauguration), I was smitten. I shared my excitement with an intern at work. She pulled me close.

“Did you see her documentary?” the intern asked. “It debuted last night on HBO.”

I decided right there I would save it for post-hysterectomy viewing. Later that night, I set the DVR to record and checked off yet another item on my hysterectomy prep list.

Fast forward five weeks.

This morning I woke up kind of achey, and not motivated to do much that involved getting off of my recliner. I grabbed the remote and decided it was time. I selected Beyonce’s show, and settled in with a cup of coffee and a warm blanket.

Everything was going fine at first. Lots of dancing and gyrating, peppered with insightful behind-the-scenes stuff. Perfect. Then she got pregnant. I had avoided previews of the show on purpose, so I was surprised to see the majority of the documentary examined her impending motherhood.

I sobbed when she shared in whispers of hearing her first child’s heartbeat … then miscarrying one week later.

I cheered for Beyonce when she felt nauseous, then took a test to confirm what she suspected. A baby!

I worried when she hid the pregnancy, partly because I hoped she could keep it private but mostly because I feared her “Bootylicious” moves would somehow dislodge the embryo. Seriously.

The more pregnant Beyonce became, the more introspective she became. This all made sense to me.

Until she said: “Bringing a baby into the world is the most powerful thing a woman can do.”

I wondered where that left me. With no womb to nurture a baby. Was I less of a woman? Does my hysterectomy make me less powerful in the world?

OK. I know, I know. I need to take a chill pill. Beyonce is a celebrity, and honey — with all those hormones coursing through her veins — she didn’t mean it literally.

Or did she?

Beyonce seemed very emotional when she spit out the words, and I’m sure she meant every bit. Bringing life into the world is powerful act. And who wants to argue about the power of childbirth?

Not me.

Yes me.

I’ll never know what it feels like to give birth. Or even get a positive result on a cheap pregnancy test. I forfeited that chance over and over with failed relationships, career-building promotions and a cornucopia of missed opportunities.

And now that I’ve had a hysterectomy, I know that the most powerful thing I ever do won’t be giving birth.

I’m filled with crazy potential, and none of my value is tied to my baby-making abilities.

At the end of the film, Beyonce cradles Blue Ivy in her arms, and wistfully acknowledges the abundance around her.

And just as her baby apparently made Beyonce’s life complete, I measure my success with a different scale.

Matt and I will build a family of our choosing. We don’t know what it will look like, but I’m pretty sure it will be the most powerful thing we ever do.

Steppin’ out

Charlie and I celebrate my first adventure outside since returning from the hospital.

Charlie and I celebrate my first adventure outside since returning from the hospital.

I knew my first walk outside since I got home from the hospital would be a big deal, but nothing could truly prepare me for the experience.

Since most of the snow has melted, I chose to walk out back with my pup Charlie. The experience left me truly overwhelmed … by the amount of dog poo that needs to be picked up. That’s right. Without the snow to camoflauge, I was out for a hike on Poo Mountain.

Normally I would grab a couple plastic bags and take care of the situation. But with strict restrictions on bending/lifting/twisting, the Poop Patrol was a no go. So I skillfully bobbed and weaved my way to the back of the yard, surveyed my path, then scouted out a return trip. The mines were everywhere. I didn’t want to step on one, especially with my nifty new slip-on Merrill shoes. So I let Matt lead the way, and managed to even avoid the puddles of mud.

For the last week, the most exercise I got was traveling from my recliner to the loo. When I was feeling feisty, I would loop through the kitchen and grab a cup of coffee. Or maybe to the bedroom to pretend I was putting on something other than a nightgown. Again.

It took days to work up to the trip outside. I starting talking about it at the beginning of  the week. “I’m gonna walk all the way to the neighbor’s driveway!” I would declare to no one in particular. Usually such bravado would be followed by a serious nap.

I would look out the front window, and imagine walking along each cement square into unchartered territory. Then the doctor’s voice echoed in my brain. “Remember: As far as you walk, you need to still make it back.” She was right. My next door neighbor’s yard seemed an attainable goal.

I surprised Matt by suiting up this afternoon. I even traded in my nightgown for a pair of black sweatpants and a grey turtleneck. When I started zippering my coat, Matt sat up on the couch. “Hey! Where are you going?” he asked, genuinely amazed to see me up and about.

“I am going for a walk,” I said. Matt quickly hopped up and slipped on his shoes. “Why don’t we go out back?”

I hadn’t even considered that option. But I liked it. If I fell, or contorted into some ungodly post-hysterectomy shape, I wouldn’t have an audience. Save for Tangelo, our neighbor’s newly adopted golden retriever. But he’s a trustworthy fella. I doubt he would cause trouble.

So we went out back. Charlie bounded between the piles of poo, and I made my self dizzy staring down at my foot placement as I made my way through the yard.

Once I got back in the house, I surprised myself with a burst of energy instead of a nap.

In all honesty, I didn’t expect today to go this way. Last night I abandoned my recliner and tried sleeping in my bed for the first time. The experiment ended badly, and I woke up with my back in painful spasms. This morning I could hardly even roll out of bed, and definitely didn’t have any form of exercise on my agenda.

But in this I found a lesson. I pushed through the pain, and kept moving.

I don’t see another option.

Wait! Was that a hot flash?

My first hot flash took me by surprise.

I was snuggled in on my recovery recliner, wrapped up in a sweater, a blanket and wearing slippers. I always run cold, and have taken to covering up instead of engaging in Themostat Wars with Matt. Even with the blanket, I still make him concede to a 70-degree temperature when I am home.

So this  afternoon, as I felt a drip of perspiration fall down my ribs, I knew something was amiss.

“Honey, is it hot in here?” I asked, plainly expecting Matt to dramatically exclaim how he was melting. Instead, he said, “No. It’s not.”

I threw the red-and-white knitted blanket to the floor in one big motion.

“Your face is bright red,” Matt said.

I jumped out of the chair, energized by the heat. As I kicked off my slippers, I swirled around, closing my eyes as the small breeze tucked under my purple nightgown.

“Jill, you better sit down. You’re going to get dizzy.”

So I sat. The hot flash celebration was short lived. The intense heat wore off in about five minutes. Out of habit, I put my sweater back on. That didn’t last long. It took a good 30 minutes before I felt close-to-comfortable.

In all honesty, I wasn’t expecting a hot flash. My surgeon had salvaged my left ovary and fallopian tube. The hysterectomy was designed to keep menopause at bay for another 10 years.

Still, I knew there was a chance this might happen.

When I went under the knife, a good portion of my internal organs “went to sleep” — including my remaining ovary. I’ve heard sometimes it takes weeks, or more, for the remaining ovary to “wake up” and fully function again.

There’s also the chance it won’t start working again. And I will go directly to menopause. If this happens, I will discuss hormone replacement therapy with my surgeon. In the meantime, I will keep a journal of my symptoms and present them when I see the doctor a week from today.

I have a bum thyroid that leaves me basically always freezing my butt off. So up until today, I always made jokes about how hot flashes will be a welcome change … when I get the change.

Now that I got a taste, I’m not so sure.

I thought I’d love the sensation of being hot, but really I just felt flustered and sweaty. And the randomness of it all sorta freaks me out.

A friend of mine recently told me getting a hysterectomy is the beginning of my story, not the end.

I suspect she was right.

Post-op: Day five.

suitcase

First, I’m glad to say the pain meds are working. I’m on percocet every four hours, and I’m feeling minimal pain from the hysterectomy. Mostly it’s just when I get up and sit down. Somehow the abdominal incision still feels numb, so mostly it’s internal stuff (especially where my right ovary and fallopian tube were removed) that’s causing me discomfort.

I’ve been home for two days and have been trying to get up as often as I can. This usually means for pee breaks (I’ll circle around to the kitchen to take the scenic route back to the recliner). Walking is good to prevent blood clots and to build strength. I ask no questions. I just walk as much as I reasonably can.

I found that I packed well for the hospital. I used everything I packed, and only sent my dear boyfriend home for a backscratcher after an unfortunate allergic reaction to a painkiller.

Here’s a list if what I packed:

  • Two pairs of pajamas. After the first day, I was ready to ditch the scratchy hospital gown and put on something that made me feel good. I also brought my own socks, although the hospital socks worked well.
  • Shampoo/conditioner. You’ll love having your own stuff when you finally get your shower. This also goes for toothbrush/hairgel, etc.
  • Computer/cell phone/power cords. I didn’t use these much the first day. I was sleeping, and if I was awake I was busy hitting my painkiller button. But by the end of day two I was on my computer, checking my Facebook and posting a blog update. I found my attention was short, but I still appreciated the distraction.
  • Lap pillow: This is essential, especially with a abdominal incision. I used it to hold close as I sat up in bed, and sometimes just laid it atop my belly for a gentle pressure on my abdomen. I found countless uses for the pillow, including placing it beween myself and the seatbelt on the way home.
  • Sleeping mask/earplugs. I got mad use out of the eye mask. I was fortunate enough to have a room of my own, but there were some lights that wouldn’t go off. And sometimes I wanted to snooze while my boyfriend was in the room. I never had to use the ear plugs, but I’m glad I had them, just in case.
  • Underwear. I bought undies that are about a size too big to accommodate the dreaded swelly belly. It ends up they fit perfectly. I made sure they are cute and girly, just because pink and purple polkadots are awesome. If you have an abdominal incision, you need to make sure the waistline of the panties is higher than the incision. Mine lies about five inches above the cut.
  • A personal item that brings comfort: I brought with me a crocheted uterus, complete with ovaries. She’s got a cute smile, and it reminds me of the great journey I am on.

The great victory since I’ve returned home is that my bowels have resumed function. I had no idea that once the surgeon touched my intestines, they would react by significantly slowing down. It took a while to bring them back to life, a process that almost was thwarted hours after my surgery when I was accidentally fed a pork chop instead of ice chips for dinner. Yeah. A few days of abdominal discomfort followed and finally was resolved through belly massage, drinking lots of water and walking a lot. That and twice-daily doses of colase.

What I find  most amazing about this whole experience is that I was in the hospital for a total of 52 hours, from check-in to exit. I find this hard to comprehend, when I consider that I underwent major surgery with at least three pairs of hands inside my belly. I was ready for a four-day stay, and was shocked when the nurse cheerfully told me it was time to go.

While I did find comfort in having a button of dilaudid at my fingertips and a medical staff and my beck and call, there’s a lot to be said about recovering in my personal space.

As they say, there’s no place like home.

Resurfacing

Jillian waits to go under.

Jillian waits to go under.

Exile from Hysteria is complete.

Yesterday, sometime between noon and three, a surgeon removed my uterus and cervix along with my right ovary and fallopian tube. I’m not gonna lie. The pain is intense.

ivSadly I seem to be allergic to the best painkillers. I lived with the first one for almost 18 hours before the itching became too much. Then I switched to a different drug, but too closely on the tail of the first pain killer. Those next six hours are a blur. I came out of it with a swollen allergy lip and demanding that Matt bring with him a back scratcher.

I’m not allowed anti-inflammatories, so I’m relying on ice packs and a stomach binder to keep the swelling down. This part is simply miserable.

beeperMatt has been a trouper. He stayed at the hospital waiting room, hopefully watching an electronic board post my latest status update as I moved through the various stages of surgery. The front desk gave him a restaurant-style beeper to carry that would alert him when I cleared significant hurdles, and more importantly when I was ready to go up to my hospital room.

I don’t remember much about yesterday, but I do remember Matt was there for all of it. He called my mom and brother when I came out of surgery, he met with the surgeon to get the skinny on what went down, he escorted me up to my hospital suite and fed me small pieces of a pork chop dinner.

I sense that resurfacing will take a long time.

My surgeon stopped by this morning, and spoke with me in detail about the surgery. She confirmed a long-standing suspicion that I had about endometriosis moving high in my abdomen. In recent weeks I had another doctor tell me I most likely have gall bladder issues causing the pain below my ribs. It ends up that it was endo the whole time. The surgeon was able to break it down, hopefully eliminating that problem.

Later today I was overcome with unfocused crying jags. I had read about this possibility in the discussion forums, but when the first wave came I was completely unprepared. “Are you in pain?” the nurse asked. “No. I don’t know why I am crying.”

The second jag was inspired simply by the fact that my room is in the Obstetrics wing, and that I can hear the shrill cry of newborns.

Sigh.

I fear this resurfacing will take place in phases. The road I took here was winding. How could I expect the road out would be any different?