Before my parents separated, I was what people would consider an "Air Force Brat". I was born into and grew up on a military controlled base where everything was extremely regimented. It's tough to explain how tightly every aspect of your life is controlled, unless you're directly employed by them, are a spouse of a military member, or are a kid born into the system. But the fierce domination definitely exists, especially when you live on base, as we did when I was extremely young.
I have no idea what the process was for regular kids entering kindergarten in the 1980s. But I do know what it was like for a five year old residing at Fairchild Air Force Base in Washington State. Fairchild is a base that is primarily used for preparing soldiers for Combat Search and Rescue and has numerous instruction fields with rope climbing walls, man-made lakes to swim through, simulated landmine exercises (and how to avoid stepping on one), and dedicated areas where men could practice jumping out of airplanes and perfect their pararescue methods. The process to qualify and train for combat rescue is intricate, extensive, and incredibly arduous. A lot of soldiers can't hack it and end up entering other military occupations.
So it should come as no surprise that on a base that prides itself in training the toughest beasts in the Air Force would have the most severe battery of physical and mental tests to qualify a five year old to enter kindergarten.
It's been 22 years, so I don't remember the exact details leading up to that day. I think my mom probably tricked me into cooperation by saying I was going to get to play a lot of games that afternoon. I was extremely gullible, as is any typical five year old. I was also easily persuaded by these French imported petit fours my mother always seemed to have on hand. All she had to do was give me one of those tiny little cakes, and I would happily do whatever was asked of me.
Big mistake that day.
I stared around the school gymnasium and was wholly terrified at the amount of sheer young children and adults. Several booths were setup and these adults were grilling children and asking questions like "If I take away two pennies, how many pennies are left in this pile?" or "Point to which block is BLUE" or "Put on these headphones and raise your hand every time you hear a beep."
It looked brutal. By then, my terror had given way to resentment. These were not games; they were tests. I rebelled. My mother patiently explained that by doing well on these tests, I would get to start school with all the other kids.
So I agreed to cooperate.
Kind of.
I ended up failing every single test presented to me. I didn't count the pennies correctly, I pointed to the block that was yellow, and I didn't raise my hand when the headphones instructed me to do so. I fell down when they asked me to walk down the yellow taped line on the floor, and I didn't appear to know the difference between a cat and a dog.
I ended up in Remedial Kindergarten as a result. This was the technical term for the class, but every adult referred to it as special. We were special children, unlike those other regular kids. Therefore, we got to be in the special class with the special teacher.
I remember when my mom got the news. I was in the living room, which was only a few steps away from the kitchen where our house phone remained.
"My child is special? Special?! So really, you're telling me my kid is retarded???" my mom blurted out.
"We don't like to use that word," the woman on the other end told my mother.
So the word that was used was special. It was always special when it came to my classroom and the kids that were in it.
But no one really told me I was special. It kind of came as a surprise. And not like a "Oh hey! It's your birthday and we threw you a party!" kind of surprise or a "Congrats on getting married! We're sending you on a cruise!" No. It was the kind of surprise where you go to use a public bathroom stall and realize the person before you didn't flush, and you really have to use the bathroom, but the mess they left behind will definitely NOT FLUSH, and there aren't any other stalls available, and a line of angry people are staring at you and waiting for you to hurry up and go pee so they too, can go pee.
I remember my first day of kindergarten perfectly, as if it were yesterday. I had picked out a matching two piece blue/black striped shirt and skirt combo with black Mary-Janes. I remember holding my brand new lunchbox with my brand new little backpack stuffed full of paper, pencils, crayons, a ruler, and a compass that would never ever be used (probably because we were special children). My mom took me to school, and I tightly held her hand as we walked through the long corridors to the classroom. My classroom. My special classroom. My mom took me inside, helped me put away my backpack and lunchbox, kissed me goodbye, and left.
That's when I started looking around the class.
All around me were twenty or so kids, but that's where our similarities ended. Most kids were spaced out. Some were drooling. A few were crying. One kid was in the corner of the room, rocking back and forth. Another kid was banging his head rhythmically into the wall. Furthermore, no one I said hi to, said hi back. They seemed confused and terrified by my interaction. But to the teacher and her assistant, they appeared to accept this as all perfectly normal.
But even I knew it wasn't normal.
I remember heaving a very sophisticated five year old sigh and plopping myself down at the desk that was clearly marked with my name on it. No, I didn't quite know how to read at that point, but my parents had taught me how to write my own name. Therefore, I could recognize it. I remember the teacher, Mrs. Beetle, giving me an over-enthusiastic high-five and a sticker for finding the desk that belonged to me.
Over the next several weeks, I felt more and more like I wasn't quite in the right class. I continued to receive unwarranted and zealous praise for doing the most simplest of tasks: Like remembering to pull up my pants after using the restroom. Or sneezing and using a tissue, instead of wiping my hand all over the wall. Obviously, I didn't know I was in remedial kindergarten. All I knew was that we got a special recess time and the kids in my class sucked at playing jump rope. They just stood there, gazing off into the distance as the rope hit their stationery feet. Every. Single. Time.
You would think that the head teacher would have caught on almost right away that I wasn't meant to be in remedial kindergarten. Unfortunately, I confirmed to the school authorities that I probably did belong in remedial kindergarten on several unfortunate and sadly serendipitous occasions.
There was the day that the school abruptly replaced the beautifully soft and exquisite black sand in the playground with smelly rough beauty bark. And when I saw the change, I bawled my eyes out and refused to come out of the classroom, despite the coaxing of my teacher that it would be okay.
"Sometime it's hard for special children to accept changes in life," she calmly said.
"I WANT MY SAND BACK!" I blubbered and hid under one of the desks. For the rest of the year, I adamantly rejected the concept of participating in recess.
Confirmation number one.
Then there was the three-foot tall plastic red shoe with the huge white laces that was supposed to teach us kids how to tie our shoes correctly. I don't know why, but that shoe terrified the beejezus out of me. We would have to stand in line and were given one minute each to tie the laces together properly. And every single time that it was my turn, I would start bawling and would hide under one of the desks.
Confirmation number two.
Then came the granddaddy day of them all. As part of teaching us communication, critical thinking, imagination (and other bullshit ideals that elementary school pumps us kids with), each week we had show and tell. Sometimes there was a theme, and I remember one week the theme was the colloquial "So what do you want to be when you grow up?"
Kids suck at this answer. They always have, and they always will. If you talk to a group of kids, you will quickly realize that in their world, only four or five occupations exist. Total.
Doctor. Lawyer. Teacher. Astronaut. Princess. And the last one doesn't even count. Stupid kids.
I remember that I was the last one to go that day, according to the order of the circle we sat in. I thought long and hard about what I wanted to be while each kid went their turn. When it came my turn, I felt confident in my answer. Mrs. Beetle pointed at me. I bravely stood up (not a requirement of show and tell), looked around the room, smiled at my fellow classmates, teacher, and her assistant, and I confidently said:
"I want to be the person that sells cookies and coffee at rest stops along the highway."
You see, I admired those people who had those little stands at the rest stops. It appeared they had their own business. They got to pick whatever kind of cookie and coffee they wanted to sell. Heck, sometimes they even baked them themselves! These people got to sit out in the sun and talk to different people every single day. Their booths were always so busy and the people selling the cookies and coffee were always friendly and smiling. Plus everyone likes eating cookies and drinking coffee, so it seemed these people got to make other people happy.
As a five year old, I didn't realize these were generally charities. I saw it as a complete business - and one that could be outdoors as well! I liked nature. I also liked talking to different people, so my career choice on this show-and-tell day seemed perfectly appropriate, fitting, and very smart.
I looked around the room for affirmation.
Instead, I got silence. Total fucking silence.
Final confirmation. Strike three: You're out. Call the parents and tell them that their child is no longer special; she's just flat out retarded at this point.
But as we all know, this is not how the story ends. Although I finished remedial kindergarten, I did not enter remedial first grade. In fact, I never had another special class ever again. Despite my transgressions, penchant for crying and hiding under desks, and wishing to work at locations primarily dealing with portable toilets, Mrs. Beetle managed to realize that the people who conducted the entry-level kindergarten tests had made a mistake. A big freaking huge non-special mistake. My mother said it had something to do with eventually teaching myself to read and then trying to get the other kids to learn how to read as well.
"Your child should have never been in this class. In fact, I'd suggest skipping first grade for her and having her enter second grade." Mrs. Beetle told my mother over the phone.
My grandmother was visiting at the time. My mother shared the news with her, and they both rejoiced. My mother would tell me of the conversation she had with my grandmother years later: "I knew Sarah wasn't handicapped all along. I knew they had made a mistake. I knew she was incredibly intelligent."
I do remember that my grandmother pulled me aside that day and had me sit on her lap in our living room. "Sarah," she softly asked in her perfect North-Londoner clip, "Why did you fail all those entry tests to get into kindergarten, if you were so smart all along?"
I looked back at her with my big honey-colored eyes and told her the truth: "I thought if I failed those tests, then they would say I couldn't go to school. And I could stay home with mummy everyday and watch soaps and play games with her."
My grandmother was speechless. She stared at my mother. My mother doubled over and starting laughing in a manner I had never seen her do before.
"Oh, those poor people that tested her" she said gasping for breath, "Oh my God...if only they had known they had been played by a five year old girl!"
Wednesday, August 17, 2011
Saturday, August 13, 2011
My Ouroboros
I am standing on our balcony watching the sunset fade into the distance of our Las Vegan residence. The air is hot, sticky, and stagnant. It reminds me of Louisiana. The normal evening clamor is tranquil for once, and it gives me the peace I need to contemplate.
I don't bother asking "Why me?" anymore, because that question doesn't make sense. If not me, then it's someone else. And that doesn't make me feel any better; it offers no relief - only regret.
I also know I don't suffer alone. Some have easier problems, some have worse problems, and some have problems that are simply just different from mine. But in the end, we all suffer - in one way or another.
I've said it before, and I'll say it again: I am a fatalist, yet I also accept the power of free will. I believe that certain events in our life are predetermined and destined to happen, no matter what. However, I accept the notion that we are empowered to influence the outcome of these events. This is the philosophical concept of compatibilism.
Every major event in my life was/is meant to happen, yet I have the power to choose how I react to each and every occurrence. I also have the ability to influence the outcome. My beliefs are best explained in the classic joke, in which a person prays to the Lord and asks him to help him win the lottery:
Sam was in dire trouble. His business had gone bust and he was in serious financial trouble. He was so desperate he decided to pray for help. He began, "God, please help me. I've lost my business and if I don't get some money, I'm going to lose my house as well. Please let me win the lottery." Lottery night came and Sam didn’t win. Again Sam prays, "God, please let me win the lottery! I've lost my business, my house and I'm going to lose my car as well." Lotto night comes and Sam still has no luck. Once again, he prays, "My God, why have you forsaken me? I've lost my business, my house, and my car. My wife and children are starving. I don't often ask you for help and I have always been a good servant to you. PLEASE just let me win the lottery this one time so I can get my life back in order." Suddenly there is a blinding flash of light as the heavens open. Sam is confronted by the voice of God Himself: "Sam," says God, "Meet Me halfway on this. Buy a bloody ticket!!!" [http://www.playlotteryonline.co.uk/Jokes.htm]
I have always been a good person. Not a great person, not a bad person, but simply a good person. I could be better - naturally, I am no Mother Theresa. But I can honestly say I have never killed someone or something (beyond the occasional ant in my house or the tragic accident involving a pet gerbil in the sixth grade). I have not committed adultery. I have never stolen a single thing past the age of seven years old.
[It was a pack of $1 fabric "friendship" rings. I dragged my poor cousin Em along for the ride, gave one to my mother, and got in serious trouble with her. I had to pay for the rings out of my miniscule birthday money, got a dramatic talking to from the store manager about going to jail next time, and I didn't even get to keep the darn things. I effectively learned my lesson.]
My life has been turned upside down for several years now, battling various illnesses and ailments, all of them somewhat interrelated. And these diseases and conditions are always exotic and generally rare (side note: I am tired of being interesting to doctors). But this last bit of news has taken me, and everyone close to me, for a complete whirlwind rollercoaster. And I have never liked carnival rides.
But as I stand on our balcony, the sky now faded to black and sparsely showering fat raindrops, I realize that perhaps this is my second chance at life. If I get through surgery and come out okay (minus several tumors and cysts, and perhaps an organ or three missing), that maybe this is God telling me to do things differently this time around. Not everyone gets the opportunity for a fresh start, but perhaps this is His gift to me.
I wonder what I will do differently if given that chance. Most of them are cliche. Some of them are more drastic. But they all involve self-reflexivity and giving back more than what I ask for myself. I have spent the last five years in a strange limbo of being focused on myself and my health...and it is borderline pathetic and toxic to one's soul to be that self-absorbed.
If given a second chance, I will not squander it. This is my ouroboros, the recreation of myself without giving death to the old. I still want to be me, just a better version of me. I can't wait to have the energy and lack of pain so I can volunteer more in my community, be more active in my relationships with my family, possess the vigor and clarity of mind to write vignettes again, be a better worker, a better friend, a better servant to the Lord, and a better wife to a loving husband who has put up with countless days where I am too weak to rise up from the blankets of our bed. I have failed on several accounts. Not only do I deserve more, but others warrant more than I have been able to give.
I am not saying that I won't be scared or have moments where I break down and weep out of pure fear. But I refuse to cry victim. I will no longer claim it is unfair. Everyone has a path to follow, and this is the path chosen for me. Now it is up to me on how I will handle it. It is time for me to make the decision on how I handle all of this.
I am making the choice to be wise. To be humble. To be gracious. And most importantly, I am making the choice to be strong and resilient.
I choose to be the serpent who bites her own tail in order to be reborn into something more.
I am ready.
I don't bother asking "Why me?" anymore, because that question doesn't make sense. If not me, then it's someone else. And that doesn't make me feel any better; it offers no relief - only regret.
I also know I don't suffer alone. Some have easier problems, some have worse problems, and some have problems that are simply just different from mine. But in the end, we all suffer - in one way or another.
I've said it before, and I'll say it again: I am a fatalist, yet I also accept the power of free will. I believe that certain events in our life are predetermined and destined to happen, no matter what. However, I accept the notion that we are empowered to influence the outcome of these events. This is the philosophical concept of compatibilism.
Every major event in my life was/is meant to happen, yet I have the power to choose how I react to each and every occurrence. I also have the ability to influence the outcome. My beliefs are best explained in the classic joke, in which a person prays to the Lord and asks him to help him win the lottery:
Sam was in dire trouble. His business had gone bust and he was in serious financial trouble. He was so desperate he decided to pray for help. He began, "God, please help me. I've lost my business and if I don't get some money, I'm going to lose my house as well. Please let me win the lottery." Lottery night came and Sam didn’t win. Again Sam prays, "God, please let me win the lottery! I've lost my business, my house and I'm going to lose my car as well." Lotto night comes and Sam still has no luck. Once again, he prays, "My God, why have you forsaken me? I've lost my business, my house, and my car. My wife and children are starving. I don't often ask you for help and I have always been a good servant to you. PLEASE just let me win the lottery this one time so I can get my life back in order." Suddenly there is a blinding flash of light as the heavens open. Sam is confronted by the voice of God Himself: "Sam," says God, "Meet Me halfway on this. Buy a bloody ticket!!!" [http://www.playlotteryonline.co.uk/Jokes.htm]
I have always been a good person. Not a great person, not a bad person, but simply a good person. I could be better - naturally, I am no Mother Theresa. But I can honestly say I have never killed someone or something (beyond the occasional ant in my house or the tragic accident involving a pet gerbil in the sixth grade). I have not committed adultery. I have never stolen a single thing past the age of seven years old.
[It was a pack of $1 fabric "friendship" rings. I dragged my poor cousin Em along for the ride, gave one to my mother, and got in serious trouble with her. I had to pay for the rings out of my miniscule birthday money, got a dramatic talking to from the store manager about going to jail next time, and I didn't even get to keep the darn things. I effectively learned my lesson.]
My life has been turned upside down for several years now, battling various illnesses and ailments, all of them somewhat interrelated. And these diseases and conditions are always exotic and generally rare (side note: I am tired of being interesting to doctors). But this last bit of news has taken me, and everyone close to me, for a complete whirlwind rollercoaster. And I have never liked carnival rides.
But as I stand on our balcony, the sky now faded to black and sparsely showering fat raindrops, I realize that perhaps this is my second chance at life. If I get through surgery and come out okay (minus several tumors and cysts, and perhaps an organ or three missing), that maybe this is God telling me to do things differently this time around. Not everyone gets the opportunity for a fresh start, but perhaps this is His gift to me.
I wonder what I will do differently if given that chance. Most of them are cliche. Some of them are more drastic. But they all involve self-reflexivity and giving back more than what I ask for myself. I have spent the last five years in a strange limbo of being focused on myself and my health...and it is borderline pathetic and toxic to one's soul to be that self-absorbed.
If given a second chance, I will not squander it. This is my ouroboros, the recreation of myself without giving death to the old. I still want to be me, just a better version of me. I can't wait to have the energy and lack of pain so I can volunteer more in my community, be more active in my relationships with my family, possess the vigor and clarity of mind to write vignettes again, be a better worker, a better friend, a better servant to the Lord, and a better wife to a loving husband who has put up with countless days where I am too weak to rise up from the blankets of our bed. I have failed on several accounts. Not only do I deserve more, but others warrant more than I have been able to give.
I am not saying that I won't be scared or have moments where I break down and weep out of pure fear. But I refuse to cry victim. I will no longer claim it is unfair. Everyone has a path to follow, and this is the path chosen for me. Now it is up to me on how I will handle it. It is time for me to make the decision on how I handle all of this.
I am making the choice to be wise. To be humble. To be gracious. And most importantly, I am making the choice to be strong and resilient.
I choose to be the serpent who bites her own tail in order to be reborn into something more.
I am ready.
Thursday, August 11, 2011
Moving Backwards
For the first time in my life regarding writing, I don't know where to begin.
I write humor blogs. I try to make people laugh. I will do whatever it takes to coax a smile out of someone. A snort is an extra 10 points.
I cannot be that person right now. And I am sorry. I am also sorry this blog will be boring.
I first want to thank everyone for allowing my parents, my husband, and myself the privacy I needed. I wasn't trying to shut anyone out, as one of my friends feared. I simply didn't know how process the information and figure out my feelings. I still don't know how. But I will try. Because if you are reading this, you obviously care about me. And I care about you. So excuse the rambling, the massive typos, the digressions, major swear words (I can't be a lady right now), and the terrible writing.
As I write, my tears blur the screen. I am not a fucking crier when it comes to myself, so this is the worst. I feel weak, and angry that I feel weak.
If you've been my friend for eons, and pretty much know my medical history from age 22 up till today, you can skip to the asteriks paragraph break. If not, read on.
I have suffered from severe pelvic pain since I was 22, shortly after I got married. It was one of those gradual transitions...I never used to know when my period was coming, because I had no pain. Then I began to have some pain, but it was easily controlled with a Tylenol or two. No biggie. Somewhere around age 23, I began to have incredible, mind-blowing pain: Some months, I would literally blackout from the pain. But at the time, I didn't have a job that offered insurance, so I could never fully get checked out. I remember a particular Urgent Care visit where I bawled my eyes out, trying to explain to the doctor that I felt like my intestines were being ripped out. She looked me square in the eye, and told me I was being ridiculous. "Being a woman involves being in pain around your period. Grow up." She snapped. And just like that, I was dismissed.
I tried to grow up. I tried to be "a woman". Maybe this was normal.
At age 24, I finally was on decent medical insurance through Josh's work and decided it was time to stop going to Planned Parenthood for the usual Pap Smears. By then, the pain had reached levels that I was unaware was even humanly possible. Literally the kind of pain where if you had the choice to press a button and end your life, you would take it. So I finally made an appointment to see a real gynecologist. He revealed through an ultrasound that it was apparent I had endometriosis, but that a laparoscopy was necessary for a proper diagnosis, as well as treatment for the issue (removal of cysts and cauterization of any that could not be reached). I agreed to the surgery, which proved to be a simple procedure with a one week recovery. The doctor assured me my monthly pain would be alleviated. When it was not, we tried hormone therapy - the pain continued to rage on. I begged my doctor for further options and advice, and I was dismissed as a patient. To this day, my medical records strongly imply that I was an addict looking to score prescription pain meds for recreational use. The only pain meds I had ever asked for were the ones involved in my surgery.
I went through two more gynecologists, who both determined that my pelvic pain was psychologically based, and that I would benefit more from therapy. I began to think that I was crazy, and all three of these doctors were right. I tried meditation methods; I tried to think through the pain. I tried herbal methods and peppermint tea. I sought advice and healing from the Lord.
Yet the pain raged on. And the pain began to last for longer intervals. At the beginning, I suffered one day of hell, prior to the beginning of my period. At age 27, I was suffering near daily pain with even more heightened pain for an entire week per month. Having lost faith in gynecologists, I went to see a pelvic pain specialist. His specialty was on the spine, but he said he worked with pelvic patients too.
My first appointment, he was disinterested, poked at my spine and determined my pelvic pain could be related to a dysfunction in the spine, especially since previous hormonal efforts to control my pain had not worked. He prescribed me some pain meds, scheduled me for a lumbar MRI, and scheduled a follow-up visit for August.
This is about where you all know the story. The head radiologist interpreter (or whatever their title may be) saw what appeared to be a teratoma bumping the spine. The doctor immediately called me and told me to schedule an emergency MRI ASAP. I was fit in the next day for my pelvic MRI. Anxious for the results, I went in for my second appointment at the pain clinic, and the doctor seemed positive. He said I did have teratomas, that they appeared to be benign, but that he didn't do that type of surgery and would need me to see another surgeon.
I didn't worry. It seemed simple enough. A basic laparoscopy appeared to be in order, just as it had back in August 2008. A small incision above the pelvic bone and around the belly button, scrape the bad stuff out, cauterize what can't be removed, and it's a done deal.
Josh was able to get me into an appointment two days following my last pain appointment. I was confident that the surgeon would read my medical records and MRI findings, set me up for a laparoscopy, and have me recover during the week I had already schedueld off. I was feeling good about it all.
*****
Josh and I set off for the surgery consultation at 11am. It wouldn't take long. I probably wouldn't even be late to work (I joked with my boss that I might be 15 min late at the most, since I started at 1). In and out. I've done this before.
We sat forever in the doctor's office. Not the waiting room - but the actual office of the doctor/surgeon himself. We stared at his credentials from Purdue, Duke, and University of Nevada. Josh and I cracked jokes about the fancy furniture. I tried to laugh, but inside my nervous right leg twitch was hopping up and down on the plush carpeting. The doc was outside his office reviewing my records for what seemed like forever. Something was not right.
I liked the doctor immediately. We went over my history and I explained the laparoscopy procedure and its findings. I explained I was fully ready for another laparoscopy, and was not afraid to get the process started.
I saw pain briefly flash across the doctor's face, and a tremble went through my body.
He explained I didn't have just one teratoma. Two had attached themselves to my right ovary, completely encircling it. The approximate size of the two combined teratomas on the right ovary was the size of a baseball (for reference, an ovary is the size of a walnut). They were choking off my ovary slowly. I was going to lose the ovary, no matter what.
Throughout his explanation, I am bravely nodding and stated that I was aware that an oophorectomy was probably in my future. Then I ask when we could get the laparscopy going.
More brief sadness comes over the doctor's face. He explains that there is a third teratoma inside the left ovary, which had made the ovary swell to about the size of a golf-ball. Therefore, I stood a great chance of losing both ovaries
I asked if my uterus could stay, since it seemed perfectly healthy at this point in time, and the news was once again sour.
He explained that a uterus without ovaries caused severe problems, such as persistent random bleeding and unregulated hormonal release. Therefore, if both ovaries were to come out, so would the uterus.
I was speechless for words at this point. Nothing was coming out. Here I was, thinking I was going in for a simple 'scrape all this shit out' type of surgery, and now I was facing the strong prospect of entering medical menopause at age 27.
Menopause at 27 does not simply mean being unable to bear biological children. It means an increased risk of heart disease and bone loss. It means the possibility of a shortened lifespan, even due to hormone replacement therapy. It also means an incredibly painful open surgery, also known as a laparotomy - where basically a large incision is made into the abdomen, the walls are separated, and the surgeons dig around into between the sliced halves. It also means an incredibly long recovery time of 10-12 weeks.
Tears are sliding down my cheeks at this point, but my face remains stoic, and I keep asking questions. The surgeon is honest and understanding, but I want to scream and cry and kick. I am 27. This doesn't seem right. I felt like an idiot for preparing myself for what I viewed as a "simple" surgery, only to find out it was anything but.
The doctor asks if he can do a pap smear and a pelvic exam on me. I try and take myself to a different place in my head while he does so. He is gentle and the instruments have been warmed. He tries to steady my shaking as he taps the instruments against my cervix. I am not scared of the pap smear - I am terrified over the news and my body is rebelling. He presses along my pelvic wall, and I cry out in pain in key spots. The doctor is sympathetic, and the nurse holds my hand.
The doctor tells me to sit up, and I fold the paper around my legs. I want my underwear back on, but the doctor's mind is still thinking. He tells me there is one alternative: da Vinci surgery, which is a robotically assisted surgery that is much more invasive than a laparoscopy, but significally less invasive than a laparotomy (several 1-2 cm incisions all throughout the stomach and pelvis, as opposed to one or two 1/2 cm incisions in a laparscopy). There was no guarantee that it would save my left ovary, but it had least held some chance of hope over the laparotomy. The doctor stated he did not perform this type of surgery, but worked closely with a surgeon at another practice who is highly skilled in this method of surgery. The recovery time would be around 5 weeks, literally half the time the recovery the laparotomy would require.
Of course, there was always the risk that the da Vinci surgery would have to turn into an open surgery and I would have to have a total medical hysterectomy, but at least I had a fighting chance. But the decision was up to me. He told me he was okay if I wanted to take a few days to make a decision.
I looked back at Josh. I asked what he thought. Josh stared ahead, stoically.
I looked back at the doctor. "Would you be part of this da Vinci surgery? I like you."
"Yes, I would be assisting the doctor surgically. I would be the tactile part of the surgery, where the da Vinci method is not as effective."
I looked back at Josh again.
"You can take a few days to decide," the doctor said.
I shook my head. "If there's a chance I can keep one of my ovaries, let's go with that."
The doctor shook our hands, told us he would get his assistant to setup an appointment with the other surgeon for next week, where the exact procedure would be discussed and a possible jump on getting started with the whole scheduling of the actual surgery. He left the room.
I turn to Josh. My husband begins bawling.
I have never seen my husband cry. My husband had a few sobs escape him at our wedding rehearsal dinner when I presented him a scrapbook of memories of his father (who passed in 2000), but my husband has never actually cried. It broke...no...smashed my heart. I ran my fingers through his hair and whispered to him and asked what he was afraid of.
"I don't want to lose you," he choked out. "This surgery...it was supposed to be so simple. And now it's become incredibly risky. And you may have to have a hysterectomy, despite everything."
And he continued to sob, and I cried too, and we clung to each other in the cold and clinincal examination room.
*****
I know some of you may read this and be like, "Well, it's not cancer at least!" or "Hell, at least you can live without those organs!" I know I'm not capturing the feeling of what we are going through, or the exact risks that are involved in this particular surgery. Part of me is too tired. Part of me is too numb.
I'm terrified out of my mind. 'Minimally invasive', as the da Vinci website puts it, is still a hell of a lot riskier than a laparoscopic surgery. I also wasn't prepared to be out of work for 5 weeks. Now I have the added stress of trying to negotiate a leave of absence with my work, trying to negotiate for the possibility of short-term disability benefits through my work so I have some income coming in, having to cancel out all of Josh's fall semester classes in order to get back the $2K we paid (which will help since I won't be making any money during my five weeks of recovery), and basically forcing Josh to also take on a second serving job at a local tourist hot spot for breakfast (tips are hefty, so he's told).
It makes me feel like a burden. On my work, to my family, to my husband, to my friends, and I hate it. I love my body in the sense that this is what God gave me, but I'm also angry and pissed beyond belief that I have to suffer so much with it. I'm angry that I'm only 27 and facing the possibility of losing what makes me female.
The heartache is unbearable. The fear is overwhelming. For once in my life, I can't effectively convey my feelings into my writing.
This is not at all what I expected. I had prepared myself, and I had prepared myself incorrectly.
I don't want to be out of work for 5 weeks. How many reruns of Cheers can one human being possibly watch on Netflix before certifiably going insane?
Two weeks ago, my biggest concern was choosing between clear, honey, or green contacts at the Vision Center and trying to figure out how to pop them in under 20 minutes.
Now, my biggest concern is wondering how much of my life I'm going to have to battle for.
I'm going to cry again. I need to go. I haven't proofread this, so ignore the mistakes. As I said before, I can't see the screen anyway.
I write humor blogs. I try to make people laugh. I will do whatever it takes to coax a smile out of someone. A snort is an extra 10 points.
I cannot be that person right now. And I am sorry. I am also sorry this blog will be boring.
I first want to thank everyone for allowing my parents, my husband, and myself the privacy I needed. I wasn't trying to shut anyone out, as one of my friends feared. I simply didn't know how process the information and figure out my feelings. I still don't know how. But I will try. Because if you are reading this, you obviously care about me. And I care about you. So excuse the rambling, the massive typos, the digressions, major swear words (I can't be a lady right now), and the terrible writing.
As I write, my tears blur the screen. I am not a fucking crier when it comes to myself, so this is the worst. I feel weak, and angry that I feel weak.
If you've been my friend for eons, and pretty much know my medical history from age 22 up till today, you can skip to the asteriks paragraph break. If not, read on.
I have suffered from severe pelvic pain since I was 22, shortly after I got married. It was one of those gradual transitions...I never used to know when my period was coming, because I had no pain. Then I began to have some pain, but it was easily controlled with a Tylenol or two. No biggie. Somewhere around age 23, I began to have incredible, mind-blowing pain: Some months, I would literally blackout from the pain. But at the time, I didn't have a job that offered insurance, so I could never fully get checked out. I remember a particular Urgent Care visit where I bawled my eyes out, trying to explain to the doctor that I felt like my intestines were being ripped out. She looked me square in the eye, and told me I was being ridiculous. "Being a woman involves being in pain around your period. Grow up." She snapped. And just like that, I was dismissed.
I tried to grow up. I tried to be "a woman". Maybe this was normal.
At age 24, I finally was on decent medical insurance through Josh's work and decided it was time to stop going to Planned Parenthood for the usual Pap Smears. By then, the pain had reached levels that I was unaware was even humanly possible. Literally the kind of pain where if you had the choice to press a button and end your life, you would take it. So I finally made an appointment to see a real gynecologist. He revealed through an ultrasound that it was apparent I had endometriosis, but that a laparoscopy was necessary for a proper diagnosis, as well as treatment for the issue (removal of cysts and cauterization of any that could not be reached). I agreed to the surgery, which proved to be a simple procedure with a one week recovery. The doctor assured me my monthly pain would be alleviated. When it was not, we tried hormone therapy - the pain continued to rage on. I begged my doctor for further options and advice, and I was dismissed as a patient. To this day, my medical records strongly imply that I was an addict looking to score prescription pain meds for recreational use. The only pain meds I had ever asked for were the ones involved in my surgery.
I went through two more gynecologists, who both determined that my pelvic pain was psychologically based, and that I would benefit more from therapy. I began to think that I was crazy, and all three of these doctors were right. I tried meditation methods; I tried to think through the pain. I tried herbal methods and peppermint tea. I sought advice and healing from the Lord.
Yet the pain raged on. And the pain began to last for longer intervals. At the beginning, I suffered one day of hell, prior to the beginning of my period. At age 27, I was suffering near daily pain with even more heightened pain for an entire week per month. Having lost faith in gynecologists, I went to see a pelvic pain specialist. His specialty was on the spine, but he said he worked with pelvic patients too.
My first appointment, he was disinterested, poked at my spine and determined my pelvic pain could be related to a dysfunction in the spine, especially since previous hormonal efforts to control my pain had not worked. He prescribed me some pain meds, scheduled me for a lumbar MRI, and scheduled a follow-up visit for August.
This is about where you all know the story. The head radiologist interpreter (or whatever their title may be) saw what appeared to be a teratoma bumping the spine. The doctor immediately called me and told me to schedule an emergency MRI ASAP. I was fit in the next day for my pelvic MRI. Anxious for the results, I went in for my second appointment at the pain clinic, and the doctor seemed positive. He said I did have teratomas, that they appeared to be benign, but that he didn't do that type of surgery and would need me to see another surgeon.
I didn't worry. It seemed simple enough. A basic laparoscopy appeared to be in order, just as it had back in August 2008. A small incision above the pelvic bone and around the belly button, scrape the bad stuff out, cauterize what can't be removed, and it's a done deal.
Josh was able to get me into an appointment two days following my last pain appointment. I was confident that the surgeon would read my medical records and MRI findings, set me up for a laparoscopy, and have me recover during the week I had already schedueld off. I was feeling good about it all.
*****
Josh and I set off for the surgery consultation at 11am. It wouldn't take long. I probably wouldn't even be late to work (I joked with my boss that I might be 15 min late at the most, since I started at 1). In and out. I've done this before.
We sat forever in the doctor's office. Not the waiting room - but the actual office of the doctor/surgeon himself. We stared at his credentials from Purdue, Duke, and University of Nevada. Josh and I cracked jokes about the fancy furniture. I tried to laugh, but inside my nervous right leg twitch was hopping up and down on the plush carpeting. The doc was outside his office reviewing my records for what seemed like forever. Something was not right.
I liked the doctor immediately. We went over my history and I explained the laparoscopy procedure and its findings. I explained I was fully ready for another laparoscopy, and was not afraid to get the process started.
I saw pain briefly flash across the doctor's face, and a tremble went through my body.
He explained I didn't have just one teratoma. Two had attached themselves to my right ovary, completely encircling it. The approximate size of the two combined teratomas on the right ovary was the size of a baseball (for reference, an ovary is the size of a walnut). They were choking off my ovary slowly. I was going to lose the ovary, no matter what.
Throughout his explanation, I am bravely nodding and stated that I was aware that an oophorectomy was probably in my future. Then I ask when we could get the laparscopy going.
More brief sadness comes over the doctor's face. He explains that there is a third teratoma inside the left ovary, which had made the ovary swell to about the size of a golf-ball. Therefore, I stood a great chance of losing both ovaries
I asked if my uterus could stay, since it seemed perfectly healthy at this point in time, and the news was once again sour.
He explained that a uterus without ovaries caused severe problems, such as persistent random bleeding and unregulated hormonal release. Therefore, if both ovaries were to come out, so would the uterus.
I was speechless for words at this point. Nothing was coming out. Here I was, thinking I was going in for a simple 'scrape all this shit out' type of surgery, and now I was facing the strong prospect of entering medical menopause at age 27.
Menopause at 27 does not simply mean being unable to bear biological children. It means an increased risk of heart disease and bone loss. It means the possibility of a shortened lifespan, even due to hormone replacement therapy. It also means an incredibly painful open surgery, also known as a laparotomy - where basically a large incision is made into the abdomen, the walls are separated, and the surgeons dig around into between the sliced halves. It also means an incredibly long recovery time of 10-12 weeks.
Tears are sliding down my cheeks at this point, but my face remains stoic, and I keep asking questions. The surgeon is honest and understanding, but I want to scream and cry and kick. I am 27. This doesn't seem right. I felt like an idiot for preparing myself for what I viewed as a "simple" surgery, only to find out it was anything but.
The doctor asks if he can do a pap smear and a pelvic exam on me. I try and take myself to a different place in my head while he does so. He is gentle and the instruments have been warmed. He tries to steady my shaking as he taps the instruments against my cervix. I am not scared of the pap smear - I am terrified over the news and my body is rebelling. He presses along my pelvic wall, and I cry out in pain in key spots. The doctor is sympathetic, and the nurse holds my hand.
The doctor tells me to sit up, and I fold the paper around my legs. I want my underwear back on, but the doctor's mind is still thinking. He tells me there is one alternative: da Vinci surgery, which is a robotically assisted surgery that is much more invasive than a laparoscopy, but significally less invasive than a laparotomy (several 1-2 cm incisions all throughout the stomach and pelvis, as opposed to one or two 1/2 cm incisions in a laparscopy). There was no guarantee that it would save my left ovary, but it had least held some chance of hope over the laparotomy. The doctor stated he did not perform this type of surgery, but worked closely with a surgeon at another practice who is highly skilled in this method of surgery. The recovery time would be around 5 weeks, literally half the time the recovery the laparotomy would require.
Of course, there was always the risk that the da Vinci surgery would have to turn into an open surgery and I would have to have a total medical hysterectomy, but at least I had a fighting chance. But the decision was up to me. He told me he was okay if I wanted to take a few days to make a decision.
I looked back at Josh. I asked what he thought. Josh stared ahead, stoically.
I looked back at the doctor. "Would you be part of this da Vinci surgery? I like you."
"Yes, I would be assisting the doctor surgically. I would be the tactile part of the surgery, where the da Vinci method is not as effective."
I looked back at Josh again.
"You can take a few days to decide," the doctor said.
I shook my head. "If there's a chance I can keep one of my ovaries, let's go with that."
The doctor shook our hands, told us he would get his assistant to setup an appointment with the other surgeon for next week, where the exact procedure would be discussed and a possible jump on getting started with the whole scheduling of the actual surgery. He left the room.
I turn to Josh. My husband begins bawling.
I have never seen my husband cry. My husband had a few sobs escape him at our wedding rehearsal dinner when I presented him a scrapbook of memories of his father (who passed in 2000), but my husband has never actually cried. It broke...no...smashed my heart. I ran my fingers through his hair and whispered to him and asked what he was afraid of.
"I don't want to lose you," he choked out. "This surgery...it was supposed to be so simple. And now it's become incredibly risky. And you may have to have a hysterectomy, despite everything."
And he continued to sob, and I cried too, and we clung to each other in the cold and clinincal examination room.
*****
I know some of you may read this and be like, "Well, it's not cancer at least!" or "Hell, at least you can live without those organs!" I know I'm not capturing the feeling of what we are going through, or the exact risks that are involved in this particular surgery. Part of me is too tired. Part of me is too numb.
I'm terrified out of my mind. 'Minimally invasive', as the da Vinci website puts it, is still a hell of a lot riskier than a laparoscopic surgery. I also wasn't prepared to be out of work for 5 weeks. Now I have the added stress of trying to negotiate a leave of absence with my work, trying to negotiate for the possibility of short-term disability benefits through my work so I have some income coming in, having to cancel out all of Josh's fall semester classes in order to get back the $2K we paid (which will help since I won't be making any money during my five weeks of recovery), and basically forcing Josh to also take on a second serving job at a local tourist hot spot for breakfast (tips are hefty, so he's told).
It makes me feel like a burden. On my work, to my family, to my husband, to my friends, and I hate it. I love my body in the sense that this is what God gave me, but I'm also angry and pissed beyond belief that I have to suffer so much with it. I'm angry that I'm only 27 and facing the possibility of losing what makes me female.
The heartache is unbearable. The fear is overwhelming. For once in my life, I can't effectively convey my feelings into my writing.
This is not at all what I expected. I had prepared myself, and I had prepared myself incorrectly.
I don't want to be out of work for 5 weeks. How many reruns of Cheers can one human being possibly watch on Netflix before certifiably going insane?
Two weeks ago, my biggest concern was choosing between clear, honey, or green contacts at the Vision Center and trying to figure out how to pop them in under 20 minutes.
Now, my biggest concern is wondering how much of my life I'm going to have to battle for.
I'm going to cry again. I need to go. I haven't proofread this, so ignore the mistakes. As I said before, I can't see the screen anyway.
Wednesday, August 03, 2011
Don't Be an "If-Only"
Unrelated to the person I was referring to in my last Facebook update, I just received news that a friend of Josh's and mine is sick. He is 27 - just a few months older than I am. He has a wife and two young kids. And he also has Stage 4 Hodgkin's Lymphoma. Although he has not yet lost the battle, the inevitable is not far off according to his doctors.
The worst part of it all for me is that we didn't even know he was sick; we haven't talked much since we moved out of Washington 2 years ago. Not out of anger or apathy - just general distance and moderate forgetfulness.
It makes my heart hurt. It makes me question what cannot be answered. I ache for his family, our friends, and for those two little boys who will only have dim memories of their father. They will have to rely on anecdotes from family and friends, and will have to finger through faded old photographs tucked away in family albums.
Despite my own issues of what I am going through, all I can think of is, "Can't I take on some of his problems, to relieve him of this? I don't have children depending on me...he does. Why was he picked? Why him and not me?"
I'm not expecting a response, because my questions have no obvious answers. I also don't want pity. What I do want may seem campy and trite, but please try.
If you're reading this (most likely those that have wandered from the link on my Facebook page), I love you and care about you. We may not talk daily, we may not have seen each other in years (literally), and in a handful of cases, we may never have formally met (because we are friends through friends). But my heart is with yours, and despite any distance, no one is ever completely out of my thoughts.
I ask that you cherish what you have with others. If you're on the outs with someone, attempt to mend it. Dote on your family and friends. And if you have kids, remember...there's no such thing as spoiling them with too much love.
The most heartbreaking phrase in the human language is not "what if" but rather "if only".
Don't wait until it's too late.
Don't be an "if only".
The worst part of it all for me is that we didn't even know he was sick; we haven't talked much since we moved out of Washington 2 years ago. Not out of anger or apathy - just general distance and moderate forgetfulness.
It makes my heart hurt. It makes me question what cannot be answered. I ache for his family, our friends, and for those two little boys who will only have dim memories of their father. They will have to rely on anecdotes from family and friends, and will have to finger through faded old photographs tucked away in family albums.
Despite my own issues of what I am going through, all I can think of is, "Can't I take on some of his problems, to relieve him of this? I don't have children depending on me...he does. Why was he picked? Why him and not me?"
I'm not expecting a response, because my questions have no obvious answers. I also don't want pity. What I do want may seem campy and trite, but please try.
If you're reading this (most likely those that have wandered from the link on my Facebook page), I love you and care about you. We may not talk daily, we may not have seen each other in years (literally), and in a handful of cases, we may never have formally met (because we are friends through friends). But my heart is with yours, and despite any distance, no one is ever completely out of my thoughts.
I ask that you cherish what you have with others. If you're on the outs with someone, attempt to mend it. Dote on your family and friends. And if you have kids, remember...there's no such thing as spoiling them with too much love.
The most heartbreaking phrase in the human language is not "what if" but rather "if only".
Don't wait until it's too late.
Don't be an "if only".
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