Well, Shit

I remember getting my first pap smear when I was sixteen. I didn’t take my bra off, which confused the doctor who just shook his head quickly at the nurse and said not to worry about it. I was so obviously mortified by nudity that he stopped trying to make conversation about halfway through and just got in and out as quickly as possible.

Those were the days. Sometimes I miss my dignity and self-respect. After a couple of decades filled with multiple surgeries and childbirths, I don’t really remember what modesty feels like anymore. I suppose every woman gets that way as she ages; dropping her panties and spreading them for public viewing just becomes an old habit. Right now, though, I am feeling pretty lucky that regularly occurring indignities no longer phase me.

Narcotics are amazing. If you have pain- I mean real pain, the kind that won’t let you focus on anything else- narcotics can be your savior. At 23, fresh out of the hospital with a bandaged splint on my right leg and a skin graft site covering my left cheek, I was grateful for the existence of narcotics as well as my mother’s insistence that I take them on schedule to avoid the pain all together. Wise advice from a seasoned RN. She failed to mention that narcotics have a miserable side effect though: Constipation. I can’t recall how many days went by before I finally told her in tears that I couldn’t go to the bathroom to save my life and things were starting to get dire. You would think by this point I’d have had no secrets left from her. This is the same caretaker who had catheterized me herself in the hospital and was at this point blow-drying my naked rear end twice a day to speed the graft site healing. Still, I waited to enlist her help until I couldn’t wait any longer.

fleet — Fleet enema. (Not the actual bottle used in this story.)

My mother is a saint. She patiently explained to me that this was very common with narcotics and gave me some stool softeners and calmed me down. When this failed to do the trick and instead exacerbated an already somewhat urgent situation, she ran to the store to buy a Fleet enema.

If you’ve never had an enema before…screw you. I don’t how your karma is so great to have avoided this major life milestone, but I’m certain it will catch up with you. I’m off-topic. An enema is either water-based or oil-based and is essentially just a big squirt bottle full of liquid to be injected directly into your rectum. Once it is in there, it breaks up whatever stool is causing a blockage and lubricates the pathway to enable you to poop. It’s not rocket science, but it’s effective. In order for this to work, however, you have to squeeze your anus closed and not let anything out until it has been in there long enough to accomplish something. This is the hardest part since after days without a bowel movement your lower intestines are already full to bursting and adding more liquid to the mix just makes it worse.

I very vividly remember laying on my side in tears in my mother’s bathroom as she pulled my cheeks apart and squirted the Fleet enema in, the whole time saying urgently, “Now don’t let it come out!” I laid that way for about fifteen minutes until I couldn’t stand it and leapt for the toilet. Thankfully, it worked, but it was a few days before I wanted any more than a liquid diet.

My relationship with excrement has pretty much gone downhill from there. Once I had children, my definition of gross changed drastically on the day I found myself sitting in a college classroom certain that I could smell poop. I checked the bottom of my shoes and starting looking around at the people next to me to find the offender. Eventually I noticed the smell got stronger every time my hand came near my face… I turned my hand over and sure enough, there was a line of baby poop smeared up the side right below my pinky finger.

Fast forward a decade and now I have a few more experiences with narcotics under my belt. I’ve learned to avoid my previous pitfall for the most part with proper supplements and diet, but the narcotics I was on following my recent surgery were stronger than anything I’ve had since my original illness; I simply wasn’t prepared. It was five days before I finally broke it to Patrick I hadn’t gone to the bathroom. We were on our way in to my post-op follow-up appointment and I had just thrown up the entire contents of my stomach. The doctor was concerned enough by my admission to call in the advice nurse who specializes in such things; the advice nurse seemed very concerned. I was weak, my pallor was poor, and my stomach wasn’t letting anything else in until I fixed this. The nurse was very concerned and advised us to go the emergency room if this went any longer. Since we were in the area, and already had a nice hospital wheelchair, we went straight to the emergency room from the doctor’s office.

Constipation does not rate high on the triage scale, unfortunately, and after one failed Fleet’s during which I sat on the toilet while the nurse haphazardly stabbed the tip of the bottle around squeezing oil all over my rear end, we waited with no further assistance and no resolution for a couple of hours. Waiting is one my least favorite things, right behind waiting with snakes. So we went home.

My mother was at home watching all of the children, and had earlier purchased a Fleet enema in anticipation of this very moment. As mothers do. We ushered Patrick out of the bedroom and I laid on my side positioned so Mom could reach the sink for warm water while I kept my foot elevated on a pillow. As she pulled my cheeks apart, I raised my head, smiled lovingly at her, and said, “Wow, this is just like old times.” Thank you, Fleet, for bringing mothers and daughters together for generations.

Please follow and like us:

The surgery

Monday, June 15, came EARLY. We had to get up at 3:30 to make the hour drive for check-in at 5:30. Naturally, I hit snooze until 4:15. I packed almost nothing, responding to Patrick’s concerns over this with my certainty that I would be issued a lovely hospital gown and all necessary toiletries would be provided. Besides, I had no one to impress. For a fleeting moment I considered the likelihood that my mother would snap a groggy-eyed photo of me in recovery to post on facebook. As this couldn’t possibly be any worse than the Christmas morning photos in my pajamas with geyser type hair on half my head and my lips so dry they apparently stayed tucked up onto my gums showcasing my chipmunk teeth, I shrugged it off.

I tip-toed into the kids rooms and gave them fierce hugs and kisses that half-woke them from their dreams and said goodbye. In the back of my mind were all the random stories you hear of people going in for a routine surgery and dying on the operating room table because their anesthesiologist was a closet coke addict and forgot to turn on the oxygen. Or similar scenarios. This surgery was not routine or short and was scheduled to last half the day.

On the drive there, Patrick got coffee. For himself. I was not allowed to eat or drink, presumably because if you do die on the operating room table, they want you looking as slender and beautiful as possible. I was silent for most of the drive, but I can never stay introspective for long and soon Patrick had me laughing. Somewhere along that drive it occurred to me that although it would be long and torturous for Patrick and my mother to sit and wait for word of how I fared, I would be asleep that whole time. For me the surgery would be “Oh, I’m feeling groggy,” and then I’d wake up. That lightened my mood quite a bit.

Check-in was fast and as expected I was issued an amazing Vera Wang-esque hospital gown upon admittance. I stubbornly demanded underwear and the nurse gave me a pair of white mesh panties new mothers get after delivery. I secretly loved them. Before Patrick could join me to wait for the surgeon, I went through the necessary scrubbing of the leg, iv inserted, monitors stuck haphazardly across my chest, and – this is the best – a hose blowing warm air was attached to an opening in my gown. My hospital gown filled up with air and they covered me with a blanket pulled directly out of a warming oven. As I crossed my arms and waited for Patrick to be ushered in, I noticed the warm air was filling out my normally frail bosom quite nicely. Patrick noticed too and complimented me on my rack as he entered. Maybe it was the Oxycodon and Valium they had just given me, but it all seemed not so terrifying at that moment. We talked about how much food I intended to eat when I woke up and as each new specialist came in to introduce themselves, I would slide in a comment about preferring to wake up with all my limbs still attached. When my surgeon arrived, I asked her if she’d gotten enough sleep and had all her coffee that morning. She laughed slightly, but I could tell she was already in the zone and focused on getting this shit done right. Her demeanor set me at ease.

In my surgeon’s own words, the actual ankle surgery, or osteotomy, is a fairly minimally invasive, straightforward procedure. With a small number of short incisions in the front and sides of my ankle, she would be able to fit a wire around the existing bone and essentially saw her way through where there used to be a joint, separating my tibia and fibula from the talus bone. These incisions would then be stitched up and the frame would be affixed using wire that would drill through one side of my limb, through the bone, and come out the other side. These wires would be inserted in my foot at the top just below my toes, in my heel, and in my leg at counter angles to prevent lateral movement of my limb along the length of the wires. The ends of the wires would be wound around bolts along the frame and tightened to create a tension-bearing member capable of withstanding the force required to shift my bones without stretching or bending. External fixation has been around a while, but the Taylor Spatial Frame is a relatively recent invention which utilizes fixation and gradual correction to modify bone. While my surgery is fairly basic and unexciting for a surgeon who specializes in limb deformities, some of the miracles these contraptions can achieve are nothing short of life-altering and awe-inspiring.

My last memory was in the operating room performing a flawless butt-scoot from the gurney to the operating room table. I vaguely remember seeing my surgeon’s face, and then I awoke in recovery. I guess it hurt, I don’t remember it that well as the recovery nurse was quick with the good drugs whenever I started to grimace. I looked at my leg right away, but there wasn’t much to see as the frame was wrapped in ace bandages top to bottom, completely shielding the carnage beneath. I asked for a pillow to elevate it and the nurse seemed surprised I could lift my leg without assistance as he tucked a pillow under my ankle. I’ve read many stories from others who’ve had this surgery and they are unable even to bend their knees or move their leg without manually lifting the frame with it, so I immediately felt lucky for my level of mobility.

It took three hours for a room to open up on the med-surg floor. Once it did, my experience went downhill. My surgeon had prescribed Oxycodon, morphine, and Tylenol. Sadly, this was not helpful and I writhed in agony sobbing until my nurse’s shift ended and she gave bedside passdown to the night nurse. I interrupted them to demand that someone call my doctor, at which point the nurse said they really didn’t like nurses to do that. My new night nurse acquiesced and my doctor not only prescribed much heavier pain medication, but also expressed annoyance that she hadn’t been called sooner. I might have taken the time to look smug if I hadn’t been in so much pain. Eventually the pain abated, but I hardly recall the rest as I was heavily stoned for the remainder of my stay. I vaguely recall pushing a button marked pain whenever I would start to feel anything, and in short order soemone would come in and shoot something into my iv, bringing relief in as little as five minutes. I had to pass a physical therapy test on crutches before they would allow me to leave, and Patrick staying right next to me the whole time for fear I would collapse. I was so stoned you guys.

I was released Wednesday, just as a migraine hit me and forced me to vomit up all of my meds. They gave me this Zofran for nausea which sits under your tongue and claims to dissolve like magic. The reality is that it sits under your tongue and makes you more nauseous as it mixes with your saliva and tastes like glue. It might be the worst invention ever.

All I remember about going home was laying across the back seat as Patrick swung by to pick up his five-year old daughter and explain that for just this once she would need to ride in the front. Her eyes got huge and she immediately rallied at the sacrifice. The next few days are sketchy. I laughed a lot. Patrick worried I was too stoned and starting cutting back my medication. At night he set his alarm for every hour and a half so he could get up and give me more medication, and he tracked every pill and dosage and time in a notebook with a diligence I wish I’d put into my kid’s baby books.

On Friday, I got to see my foot. Seven metal wires ran through my foot and leg holding one side of the frame to the other. Additionally, four metal rods about a half-inch (Patrick says a centimeter, whatever) in diameter were drilled into the front of my tibia. In all, I have 18 holes with metal protruding out of them, or 18 pin sites as they are called in the biz. Another way to look at is 18 entry points for germs to travel straight to my bones. Infection right now is my primary enemy and my first concern is keeping those pin sites clean.

You can see in the side view photo the adjustable struts connecting the frame along the bottom of my foot to the frame just above my ankle. There are six of these and starting about ten days out of surgery, I will turn each one to a prescribed number to stretch the soft tissues and Achilles tendon at the back of my ankle, widen my joint space to enable movement, and subsequently rotate my entire foot up to a flat position. In the office during this visit, the surgeon noted that one of my struts had gone slack and the number was 3mm longer than it should have been. She tightened it minimally in the office and directed us to reset it the rest of the way when we got home. That night, Patrick turned the strut, talking to me the whole time so that I didn’t even realize he was doing it. No pain.

This should be a breeze.

Please follow and like us:

Scars

He said my scars do not define me.

But they do.

My scars today tell the story of a life’s journey from a woman who thought nothing of herself to a woman who learned her real worth. I look forward to the rest of the story my scars will tell.

I have been told my scars do not define me, but this is false. My scars are the definition of how I have become me, every last one of them.

I was 23 when I first became ill. It was the oddest thing; one day I just noticed that my foot had been hurting for a while and the almost imperceptible pain now manifested in a very perceptible limp. I didn’t even know how long it had been hurting when I took myself into the student health clinic, and believed the doctor when he convinced me I had sprained my ankle without any recollection of doing so. I took some satisfaction from the knowledge that I was right, that it really DID hurt as much as I was making out, when I was admitted to the hospital a week and a half later with a soft tissue infection which had become septic.

The weeks that followed were a series of trials and travails seemingly crafted by fate to test the depths of my nearest and dearest fears. My leg was dissected down to the bone across my foot in multiple gashes and up the length of my leg from the ball of my foot to my knee. These gashes were left open to drain the infection and three times a day I lowered my leg into a whirlpool tub of betadine and cringed and screamed while the excised flesh and muscle swirled around in the eddies. Each surgery seemed to bring back larger gashes and more loose flesh as my surgeons fought to locate and remove all of the necrotic tissue. At last my fevers stopped spiking and the pain plateaued; the surgeons tried to sew me back up, but my skin had contracted. In one surgery, they placed rubber bands across a gash with staples on either side to try to stretch the skin closed. I awoke from that surgery screaming and it was hours before the surgeon found the right pain medication to allow me to sleep. Inevitably when the incisions would not close, the surgeons resorted to skin grafts which were taken from my rear end with an implement they must have picked up at Pier One in the gourmet cheese slicer aisle.

I was released from the hospital seven surgeries, two near deaths, and four ridiculous complication setbacks after being admitted, and from there I began physical therapy to learn to walk again. I visited my physical therapist three times a week, and saw my doctor weekly. During these doctor visits, he would look at the angry red skin graft sites which were not healing, shake his head in confusion, and pull out a pair of scissors and silver nitrate to cut back the inner tissue that was growing out of the weeping wounds and burn the edges to cauterize them. This pain was so great I could not physically keep my leg from shaking and the nurse would hold me down while I cried and apologized for not having better muscle control. Two months of this ritual had me walking in short stints with a cane, but in horrendous pain, and I finally saw a different doctor who decided all was not right. This doctor is the reason I swear by female physicians. Instead of writing off my tears as feminine mental weakness, she scheduled an emergency MRI; it was this test that likely saved my limb and my life as it was the MRI that found the infection had returned, had eaten every bit of cartilage in my ankle, as well as half my calcaneus (heel bone), and was working on eating my leg bones and most of the remaining bones in my foot. I was referred to the University of Washington Medical Center in Seattle and left the next day.

The diagnosis was osteomyelitis and the treatment was fairly straightforward – a pic line (which is just a thick tube to carry heavy medications) was inserted into my left forearm to feed the strongest antibiotics my body could handle directly into my central bloodstream. This would remain for two months and I would deliver IV antibiotics at home three times a day until the infection was cleared. The next part of the treatment was to cast my foot so that it could not move and risk spreading the infection to the rest of my body. The rest of the treatment was more complicated.

The prognosis for an ankle which has no cartilage is not very optimistic. There is no “fix” for this situation. A total ankle replacement is an option to replace the damaged joint, but as it only lasts a decade or so, it is not an option in a 23-year-old woman, and it isn’t an option for anyone who has live infection crawling through her bones regardless of age. The next best thing is a fusion – pins or screws hold the ankle in place and the leg bones grow into the ankle bones until there is no more ankle. Due to the infection, it would be many months before I could consider this option as well. I remember staring at the corner of the hospital room walls as the doctor gave me my last option and recommended it as the best option to get me mobile and active again: a below-knee amputation. My mother was standing there and became livid. Her voice grew strained and she snapped at the doctor that it was certainly too soon to be considering something like that. I just kept staring at the wall pretending it wasn’t real.

We left Seattle after a week with a box full of IV antibiotics, a tube affixed to my arm, and no real plan beyond finishing all the medication. Two months later I had the pic-line removed and a week after that, I found out I was pregnant.

This is where the story veers off course. The pregnancy changed everything. I couldn’t do anything about reconstructive surgery while I was pregnant, and I just kind of forgot about my foot for a few months. I wore a walking cast when I walked any great distance, used a cane when it hurt, and wore shoes with heels, even putting lifts in my athletic shoes, as my foot had dropped to a 40 degree angle and without ankle mobility it was stuck like that. I walked like this, on my toes, gingerly at first as the bone on bone grated and swelled in protest, and in time less gingerly as the joint stopped hurting because the bones grew together on their own. My pregnant body spread its healthy glow over every nook and cranny of my being as I gained weight, increased my blood supply, and infused myself with healthy nutrients and vitamins. By the time my son was born, I was in excellent health at an ideal weight- my only issue was a bum ankle.

And the scars. They were obtrusive in the beginning, angry and red. A thick, lumpy line ran up the inside of my calf. The left cheek of my derriere was marred with two bright red rectangles that mimicked the large stamps one sees on an old-timey trunk shipped from overseas. After the birth of my son, I also had stretch marks along the back of my thighs and a jagged c-section scar across my lower abdomen. My collar-bone was speckled with the remnants of where intravenous central lines had been stitched into my skin. My foot was freckled with the keloid-rimmed skin grafts that patched together my ravaged flesh. And the limp, no matter what shoes I wore or how I tried to lead with my hips, I could never quite erase the limp.

In the beginning, these scars defined me and made me feel less than those around me. They dictated what I wore in public, and how I acted. I could never pretend to be seductive or attractive again, because I knew these scars were buried beneath whatever façade I hid behind. They demoted me from the leading lady in the realtime drama that was my life to the quirky sidekick who was only around for comedic relief. Other women were beautiful. I could now only have character.

My scars made me grateful rather than in love when my boyfriend and father of my child selflessly agreed to marry me. They made me tolerant of a life bereft of love, empathy, real kindness or consideration. They made me give up on my dreams of happiness and learn to settle, to put up with a man who took his anger and stress out on me, to shrug my shoulders and remind myself that I didn’t deserve more when my husband forgot my birthday, our anniversary, and Christmas. My scars made me feel lucky when my husband told me I could go back to school, as long as it didn’t cost him a dime and I found a way to pay for childcare on my own. My scars made me embarrassed to wear a swimsuit in public, or shorts, or anything that didn’t cover my calves up to my knees so as not to offend others with my less-than-beautiful skin.

I had three children. I went back to school and graduated with a degree in engineering right after the last one was born. My mother celebrated my graduation with a barbecue and I received a few gifts, but none from my husband. I was so lucky he stayed married to me with my misshapen leg and hideous scars. I began working and found that my scars did not matter as I began to excel professionally as an engineer. I wore modified tennis shoes when I walked the construction site for twelve-hour days as a field engineer in the summer. I wore pant suits with heels as I networked with state funding representatives for my company. I stopped thinking about my scars and I started feeling that perhaps I wasn’t so lucky to have a husband who tolerated me any longer.

I left my husband, moved to Portland, went through the struggles of moving my children with me, through job loss and near starvation, and clawed my way to a position in a corporation with a real future and the ability to support my family single-handedly while paying child support to that tolerant husband who refused to find a job paying taxes. I filed bankruptcy, I paid off debt, I started saving for retirement and put my life back on track.

I met someone wonderful. Someone who saw my scars and my limp and dared to call me sexy and beautiful and everything he ever dreamed of. My foot was getting worse, though. The toes were curling up as the tendons under my foot contracted over time and surgeries to cut the tendons were only a temporary fix. I was referred to a surgeon who specializes in limb deformities and she gave me a solution.

A few weeks before the surgery, I sat with Patrick, the love of my life, and discussed my scars. I talked about getting a tattoo to cover the line going up my leg and he scoffed at the idea. He said my scars only leave him in awe of what I have been through and what I have accomplished in spite of them.

He said my scars do not define me.

But they do.

My scars today tell the story of a life’s journey from a woman who thought nothing of herself to a woman who learned her real worth. My struggles and my triumphs are etched on my body. They speak of pain I have endured, and they speak of survival. They murmur memories of torturous pain and the persistence to keep living exactly as though nothing was wrong. They remind me of the early days when I could not walk, of my mother’s cracked voice when the surgeon said amputation, and they remind me of each newborn child laid upon my shoulder to kiss their cheek after they’d been pulled from my belly.

I will have new scars soon, and these scars will define me further. They will tell the story of my rebirth as my foot is straightened over a period of six months in an external frame affixed to my bones. I welcome these scars and the new world they will usher in as I am able to walk without pain again. I look forward to the rest of the story my scars will tell.

Please follow and like us: