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 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 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.

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  1. Ohh Sarah, i am so sorry that you are going thought this! You truly are one of the most amazing people i have ever met. Im not comparing your situation with mine but In 2006 i had a back surgery and all went well...but i will forever have back problems, complications with childbirth (possible full disability) and other issues. I saw one believed me when i said i could barely walk at the age of 20. they thought i was full of shit and lying...even when it was clearay visible from my physical condition. I guess i telling You this so that you know ur not the only one doctors have pushed aside and ignored. its so frustrating and dishearting. As per your upcoming surgery you are a strong and courageous woman, i know that you will get through this and flourish afterward. Even if you aren't able to have biological children, you and josh would make Outstanding parents to any child! They would be lucky to have you ad parents...shit i want y'all as parents...your too fun and great to be around! you and your family will be in my thoughts and prayers! I love you!!

  2. I know I haven't been your favorite person the past few years, and I can be a giant dick. I truly feel for both you and Josh. That is a tremendous amount of stress, pressure, and risk to deal with. I will put the both of you in my prayers, and wish you a full and safe recovery. I love you both and hope everything turns out as picture perfect as it can be.


  3. Sarah,

    I know we don't know each other that well, but my heart goes out to you, and I am available if you need to talk. I had a laparotomy to remove a 10cm teratoma that surrounded my right ovary and crushed my kidney when I was 18. It is very frightening, and difficult to endure the feeling of being broken or damaged, and hard not to feel alone and greive for your potential children. Please remember that all things have not been decided yet, and the surgery to remove a teratoma of this type CAN be successful- I have a 15 year old son to prove it. Having been through the sutgery and recovery process I am happy to answer any questions you may have. Please take care of your self, Desiree