Lemme Back It Up

My friend's southern drawl dripped like molasses across my eardrums,  they had rushed her niece to the emergency room just the day before.  "...and the doctors told her that her brain hemmorraghe was a direct result of her birth control."  Naturally, I had to ask what kind of birth control she was taking. When the word "Desogen" came out of her mouth it, was as if she said it in slow motion, you know the kind I'm talking about - lips wrapping around every constanant and vowel of the word.  I decided right then, after being on birth control (THAT birth control) for almost 8 years, that it was  time to give my body a break. What the heck? If I got pregnant, that would be great! If I didn't well, that would be okay too! (Yes, i realize everybody and every body is different but it struck a chord with me).  This was August of 2010.

The months went on and life was great, I experienced normal monthly cramping but nothing out of the ordinary. In fact, I felt great!  Having the drugs completely out of my system felt so good, and I had no idea that I even "felt" a certain way on birth control, until I was OFF the pill. Little did I know I had a couple grapefruits brewing.  In April 2011 I took a trip to Chicago, visiting some family for Easter.  I had a perfect blend of busy and relaxation time, I missed my hubby so much, but it was so nice to be able to spend true quality time with my aunt, cousin, her daughter, and even her husband! (He was cool enough to join me in watching playoff hockey a couple times at a local bar). I was also able to spend time with a friend that lives there... so fortunate! Throughout the trip I was feeling these twinges of pain in my lower abdomen and lower back, pain that didn't seem normal, but not enough to send me running to urgent care. I ignored it for the most part, popping a couple of Aleve here and there, but I knew something wasn't right. Eh, I'd call the doctor when I got home, no biggie. 

Sorry folks, this is a long post. So the months moved on. Bloating, tightness in my lower abdomen, cramping, feeling sleepy, unenergetic; though, i was keeping up with my/our busy schedule.  "Okay, Amanda" I thought to myself... "Time to make the appointment now, it's been 2 months... the pains aren't going away, they're becoming more frequent and stronger"  Please don't get me wrong. I wasn't ignoring my body's signals, I was actually tracking the pains so that I could go to the doctor with a journal, prepared with symptoms and things that made the pain worse or better. (If you're in pain, do this!)  My solace was a hot bath or heating pad.  A friend once said to me "I believe there's nothing a hot bath can't fix" and boy, she couldn't be more correct!    

Appointment day:.  "Well, you probably just have some functional cysts that come and go with your cycle, we'll send you for an ultrasound but everything looks good. You're a little swollen but you probably had a cyst burst.  The fluid will rest at the bottom of your uterus, ya know.. gravity. That can be painful for up to a few weeks. I'll see you in a few weeks to go over your ultrasound results"  Allllrighty. Gravity. Okay, I can handle that.

Ultrasound day:  "Okay sweetie, you can get dressed, but the radiologist would like to see you."  What? If any of you have had an ultrasound before, the radiologist NEVER talks to you.  You get the standard "your doctor will have results in a few days"  So you can imagine my surprise. I took a gulp as I walked into her office, I literally thought my heart was going to pop right out of my chest.

"So Amanda.. have you had any children?"

"No"

"Well, i don't *think* it's cancer, but there's a hemorrhage on your right ovary, and both ovaries are full of cysts. I'll let your doctor know"

I had my husband on the phone before I could even open the car door. WHAT THE HELL?! Who just starts a conversation like this? What does she mean she doesn't *think* it's cancer??? How can she just say something like that and then send me on my way? Good grief!!  He calmed me down like he always does.  Let me just say here, he has been AMAZING throughout all of this. I can't put into words how he calms me, makes me feel safe, makes me feel like everything will be okay.. yea, I just can't really put that love into words.

So, a Tuesday afternoon, Joanna (remember her? from the doc's office?) calls me.  "Hi Amanda, doctor wants to send you for CA125 and tumor markers. It's no big deal, it's just a blood test, we'll send you the slip in the mail."  Uhm, okay. Sure! No big deal Joanna! Ya know... you're only telling me you're sending me for a couple of cancer tests... no biggie, I can't wait! I don't know if you've ever had these types of screenings, but the phlebotomist is extra nice to you, super chatty, super gentle, and you are her only patient, ever.  She knows what blood draws she's doing for you. She had so much pity, it was seething from her pores. She was a sweet lady though.

Then comes the follow up appointment.  My levels were all normal. I could breathe again. In my heart, I knew I would be okay.  But the pain, the pain hadn't stopped, the pain had gotten worse, in fact, a constant. I was exhausted all of the time, I was waking up in the middle of the night crying with stabbing pains. (I have to speak on account of one night in particular, the worst pain to date.  Hubby promptly got up at 2 am and drew me a bubble bath and helped walk me to the bathroom. He helped me get in as I whimpered. It hurt so bad I couldn't even cry. He disappeared to the kitchen for 3 mintues and brought back a cup of tea. He then sat down on the bathroom floor NEXT to me in the tub, and rubbed my head as I let the hot water alleviate the pressure. THIS folks, is true love. I will never in my life forget that moment. Okay, sappy, I know! But seriously, I can't express what that meant to me.)

More transvaginal ultrasounds, sonograms, more appointments. Poking, prodding. The cysts were getting bigger, time to intervene with medicine.  My doctor knew how I felt about medicine, and "medicine" in general. Less is more in my eyes, but that theory was not working and I needed some type of relief.  The doc placed me back on birth control so the hormones would start to shrink my cysts. This is a common practice..I was okay with it if it meant some relief. I didn't want the crazy side effects... I felt bad for hubby because I knew the mood swings that would ensue as my body adjusted back. Was this something I really wanted to do?  Yes... absolutely yes. I could not afford sleepless nights and painful days. 

Three months on birth control... and nothing.  January 19th, 2012. Doctor walks into the room "Tsk tsk Amanda... what is going on with you?...."

Thanks for reading everyone, I know this was a big one.

**A shout out to my biggest supporters: hubby, family and friends. I COULD NOT get through this without you.  Your support is unremarkable, gentle, and steadfast. I really try to not let this define who I am and I sometimes feel like this consumes me.  What I just summed up in this post, is almost a year's worth of time. Through each step you have been there. Thank you for everything.

Grapefruits

"Tsk tsk...What is going on with you?" my doctor asked as she sat down in her chair. "Uhm, you tell me?" I questioned,  annoyed that she'd even be asking me this type of question. That's why I'm here genius, get on with it. 

"Well, I just took a look at your latest ultrasound.....your ovaries are the size of grapefruits."  Grapefruits. Oranges. No, she definitely said grapefruits.  Those sour, yet savory pieces of delicious Florida fruit.  Grapefruits? Really? The exam room suddenly became very small, very hot, a prison that I wanted to break out of.   Her words melted together after that statement. Spinning with emotional overload I thought, "Okay, this is not cancer. I got this, bring it on doc! Now what?"  

"Well..." she muttered "...I think a laparotomy* is our next plan of attack."  Google and WebMD searches began flashing behind my eyelids. I work in the field, I've heard this terminology before. Laparotomy... as in slicing me open...and practically gutting me. "Okay, if that's what you feel is best" I said. Why wouldn't I trust her judgement?   She's been looking at all of my female parts for ten years now, of course I trust what she is saying. ..... Right?  "Okay doc" I concur, "When do you think this should be done? Would you do this if I were your daughter? How long before I can go back to work?"  

 "Yes. If I were you, I'd want this taken care of as soon as possible. I need to get in there and actually see what is happening. You'll be off at least 4-6 weeks, 8 if you can't work from home. You'll be in the hospital about a week.  I'm going to Grenada for a few weeks and we'll schedule this when I return from vacation. I'll have Joanna call you."  (More on Joanna later)

Where the hell is Grenada?  Vacation?  See about her last trip to Grenada here: http://www.buffalonews.com/city/communities/lockport/article376851.ece

(don't get me wrong, she does great shit) If she can do laparoscopies** in Grenada, why does she want to give me a laparotomy in Lockport?  I didn't want surgery in Lockport Hospital. In fact, I really wouldn't want anything in Lockport Hospital. (I had to go there once, for a major burn on my elbow/arm and they were fantastic.  But getting cut open? No thank you.)

I had about 15 more minutes with the doc before I walked in a haze, out of the exam room.  Fake smiles as I grabbed my jacket and flustered to find my car keys.  As I pushed the door open,  I realized we got about 6 inches of snow as I sat trapped,  in my own private hell for the last 20 minutes.  Where was my snow brush? Were we supposed to get snow today?   I sat in my car and cried for five minutes before I called my husband.  I went to that appointment thinking she was going to tell me the birth control had been working and my cysts had shrunk to a functional size. I was going to stop taking birth control and start on the baby making.  No... no, that was not the case at all. I had to schedule a major surgery. I had to go on disability. I didn't take extended disability. Well how was I supposed to know? I explained to hubby what was explained to me.  I was numb.  Grapefruits huh? No wonder why I'm in pain.

And so, I left.  I drove to my parents house to visit with my nieces.  A 35 minute drive turned into a 90 minute drive, the only significant storm we've had all season.  Through blinding snowfall, my mind raced with questions.  FOCUS Amanda. Drive now, think later.  

This is my journey. I decided last night that I had to write about and document this. I will do my best to define medical terms that I write about. I will do my best to give you the complete story; the good, the bad, and the ugly parts. I want you to read this, I want your husband, boyfriend, girlfriend, family, friends, bosses and co workers to read this. I want to educate you (and them) and make you (and them) aware of this auto immune disease known as Endometriosis***.  Welcome! 

*Laparotomy: A surgical procedure involving a large incision through the abdominal wall to gain access to the abdominal cavity.

**Laparoscopy:  A surgery that uses a thin, lighted tube that is put through an incision in the belly to look at abdominal organs.  

*** Endometriosis: An auto immune medical condition in which cells from the lining of the uterus appear and flourish outside of the uterine cavity, most commonly on the ovaries.