Counting my blessings

I have spent a few days thinking about how I want to convey what the surgical experience was like. I have had numerous ideas about what I wanted to call this blog entry. I've thought about how I want share my post operative experience with you, and in the end, the same mantra holds true: I count my blessings.

I woke up the morning of my surgery feeling oddly refreshed.  The first thing I said to Shawn was that I slept through the entire night.  Seriously, it was one of those deep sleeps that I didn't even move.  In retrospect, my body was preparing me for the surgery, allowing me a comfortable night's sleep to recharge and prepare.  The morning was pretty normal, we cleaned and ran to the grocery store.  The fact I couldn't eat or drink anything didn't phase me too much, as the nerves kept any hunger or thirst at bay. "Let's do this" I said, as we got in the car to make the trip to the hospital.  Holding hands the entire way like a love struck teenage couple, we chatted about the summer and music, anything to keep our minds off of the next 8 or so hours.

Surgery is such a surreal experience!  I have no other way to describe it. Everything is fluid motions from the moment you tell the information desk clerk that you are there for surgery.  I checked in and almost immediately got called back to the surgical prep room.  I must have asked the nurse 10 times if she was sure that my husband would be allowed back to see me before surgery.  "Yes, dear" she answered patiently each time.  I put on my stylish hospital gown and paper slippers, and pulled my hair back into a fancy cap and sat anxiously. I was a little bummed I couldn't wear my St. Patrick's Day socks into the OR :)  Maureen, the nurse, began  asking me a series of questions and let me know she was going to start my IV drip.  At the same moment, Dr. Lin, my anesthesiologist, came in to begin asking his series of questions.  Which, I will say right here, the staff at the hospital was caring, gentle, understanding and amazing.  "Do you have TMJ?" Dr Lin asked, as Maureen prodded at my left hand mumbling "this isn't going to work..."  I kindly interrupted Dr. Lin to advise Maureen (like I already did once...)  that she was going to have to put the IV in my arm, that my hand just wasn't going to work.  "Okay sweetie" as she pressed gauze on my hand "now you'll have a nice bruise to remember me by" Here's to your Maureen, my hand is still a pale shade of yellow.

Dr. Lin continued his questions, as another nurse brought Shawn back.  He sat next to me holding my hand looking at me with worried eyes. "This must be weird for him to see me like this," I thought to myself, as he rested his head on my shoulder.  We both knew I had to have the surgery, but I think we were both also a little in shock that the time was finally here. Over the next 45 minutes a handful of residents visited, along with a visit from both of my doctors.  I asked my questions and expressed last minute concerns.  Basically, I did not want to wake up during surgery, I did not want a large incision, if they had to remove an ovary they were to do so, and I did not want to die under the knife.  I know this sounds extreme folks, but when you have surgery you are faced with your own mortality.  Dr. Lin assured me that I was simply "going to Hawaii" for a few hours, and my surgeons assured me that I was going to be okay.  In my heart, I knew this, I trusted them with my life.  With that, a nurse anesthesiologist came in with a syringe and let me know they were going to "make me a little woozy" and in a not so kind manner kicked Shawn out of the room. "Take her glasses, and we'll see you in the waiting room?"  Shawn just looked at me and planted a kiss on my lips, I was being wheeled away as I saw him turn in a circle trying to find his way out to the waiting area.  That actually broke my heart seeing him "lost." I blabbered something about this being my first surgery, and the nurse rubbed my leg promising me they were going to take good care of me.  "Amanda, we just need you to move your butt onto this table into the groove..."   echoed in my ears as I looked around and saw a haze of masked faces.  I don't remember the OR, in fact, I don't even remember getting onto the surgical table. LOL, I can laugh about it now- damn those drugs are good!!

With heavy eyes, I woke up to sounds. "Her saturation dropped when I took out the nose tubes, let's leave them in a little longer."  I was hot. I felt lots of pressure in my lower abdomen and I was SO hot.  I mustered my energy to open my eyes and ask the nurse for a popsicle.  I got ice chips, which was okay, anything to cool me down. "You don't have a temperature, it's just the warming blankets"  Well, then, take them off! I'm so hot!  I don't know how much time passed before they actually removed the blankets, but it seemed like forever. When they removed the compression stockings, I felt like I could breathe again and that was instant relief.   "She's good to be moved down now, her husband's name is Shawn"  Shawn. Yes, Shawn. Oh yea, I just had surgery, huh, I wonder how it went.  Back to sleep.  I was mumbling about my lower back being sore and wanting to sit up. "Are you ready to sit up honey? Okay..." Before I could even answer I was in an upright position, instantly sick to my stomach. "Oh no! I need to lay back down!" I begged, and before I could finish my sentence I was puking.  Classy. I told them I thought that the anesthesia was going to make me sick.  "Babe? Am I okay?" I asked Shawn
"Yes baby, you're okay"
"Do I have an incision?"
"No honey, just 3 small ones" 
"Oh thank God, and do I have my ovaries?"
Silence.
This made me open my left eye and look over at him. "Do I have both of my ovaries?"
"No honey... they had to take out an ovary"
"The left one?"
He shook his head yes and the anti nausea medication/benadryl kicked in and I was out again. 
When I woke up a 2nd time I was more aware of my surroundings. I could tell that I didn't have an ovary. I could tell that my grapefruits were gone, what a relief. I was okay.  Over the next 2 hours my parents and brother visited. I had gotten up and walked and was even sitting in a chair.  Just when I asked for a blanket the nurse said "Actually, we were just going to tell you that you can go home"  Go home? I just had surgery, and I'm ready to go home?  Okay!  Yes, I wanted my home! My bed! My things!  Exactly 8 hours later I was home, cozy in my own bed, with 3 small bandages on my belly. 

I remembered that I had not had anything to eat or drink.  Shawn brought me some buttered toast and you would have thought I was eating the feast of a queen. That toast was the best thing I ever ate in my life.  I couldn't fully sit up as the pressure from the CO2 was bothersome.  It didn't hurt, it was just, pressure.  For those of you that may not know, when you have any type of abdominal surgery, they pump your abdominal cavity with CO2 so it expands and they are able to work freely.   They take out as much gas as they can, but some will always remain after surgery, and it has to naturally dissipate.  I didn't realize then, but the next 24 hours were a haze as the anesthesia still remained in my system. Let me tell you, when it finally wore off the next evening, boy did I feel like I just had surgery!   In awe, I couldn't believe that the pain I had, was still not worse than the pain I had prior to surgery. Eh, I suppose I could take a pain pill, everyone says it will work.  Reluctantly, I took one, knowing it would help me sleep.

The days went on, and as the doctors promised, I felt better every day. I had to repetitively ask Shawn for the first few days if I was going to be okay.  I felt okay, but I just needed his approval that I was going to be okay.  I asked him to repeat everything that the doctors explained to him afterwards... and he meticulously repeated everything, probably 4 or 5 times.  That's another weird thing about surgery, is that you hear about your own surgery, through second hand accounts, until your follow up appointment.  In the days following surgery, I had lots of visits from family and friends. The outpouring of love, caring and concern overwhelmed me, and I cannot find the words of thanks to express.  I am very, VERY blessed to have the most wonderful people in my life.  This is something that I did not take for granted, and something I will never forget in my entire life.

Anxiously, Shawn and I waited to be called back to the exam room. 
"Everything off from the waist down" and Shawn just looked at me and smiled. Yep, this is what we do in here!  Made me giggle, as I realized he had never been to the gynecologist with me before.  The doctor came in looking at my chart, greeting us with a smile. "Yes Amanda, you had quite the difficult surgery, I am surprised you lasted so long."  Looking at both of us he said "You know what we removed was a little bigger than a volleyball."  Excuse me? A volleyball? No, I think you have the wrong pictures, I had grapefruits, not volleyballs.  He took the photo series out of the chart and handed me a copy to keep.  Holy shit, I had a volleyball! It was clear as day right there in my abdomen, a volleyball. Wow.  He went on to explain that had I waited any longer they would not have been able to perform the laparoscopy and I was lucky to have had the surgery when I did.  He explained that my left ovary had no viable tissue left, as the volleyball had sucked the life out of it.  My right ovary had been resected, and the grapefruit was removed. Again, wow. No wonder I had so much pain and pressure! No wonder why I felt like I was carrying around extra weight! NO WONDER! This all made so much sense.  He removed as many stitches as he could and told me to continue to take it easy because even though I only had three small incisions, I had just had a major surgery. 

And so...that's it. I really do feel better every single day, and I'm gaining my strength back with time. I am taking this recovery one day at a time and I don't have a single complaint about recovery. I am feeling ten times better than I did before surgery, and I know that it will continue to get better.  I am ready for this chapter of my life to close, and to start a new one.
 
There are some very important things that I learned throughout this entire experience:

1. I have an absolutely amazing husband. (as if I didn't know this already... the strength and support he has given to me is beyond words.)
2. I have the best family a daughter, sister, niece or granddaughter could ask for.
3. My friends are my own personal treasure.
4. I am stronger than I ever knew or thought.
5. Our bodies are truly vessels, and we should cherish them.
6. Modern medicine is amazing and doctors and nurses really do have healing hands.
7. Positive visualization really does work.
8. If you ever have to have abdominal surgery, exercise your arms before hand because you will be    using them a LOT!
9. I do not like daytime television. And finally...
10. Count your blessings!!! Each and every single day, count your blessings.

The day after tomorrow

When I was kid the phrase "the day after tomorrow" generally meant something really exciting.  "Santa Claus is coming the day after tomorrow!"  "We leave for vacation the day after tomorrow!" "Spring break starts the day after tomorrow!"  As I have gotten older this phrase has taken on a new meaning, don't get me wrong, many exciting things happen "the day after tomorrow..."  but now it's "Rent is due the day after tomorrow!"  "The cable might be shut off the day after tomorrow!" or "My surgery is the day after tomorrow!"

My surgery is the day after tomorrow, and to be honest, I am (cautiously) excited about it.  I am very fortunate to have had this time to research, study, question, ponder, think, and did I say research? this surgery.  Yes, on any given day you may find me you tubing the procedure. When I was first told I needed surgery I kept thinking to myself, "I wish that they told me that I needed to go in today, I wish I didn't have to wait and have all this time to think about it"  Now, my thoughts have changed and I am thankful for this time that I have had to prepare.  

I want to express my gratitude to my family and friends for their support, kind words, and understanding.  I am truly blessed to have such a wonderful group of people around me to be my cheering squad. I realize in the grand scheme of things, my measily little grapefruits (which by now I am convinced are cantaloupes) aren't that big of a deal. I know that some people may think that it can't be that bad and it can't affect me that much.... but I fully expect for my life to be back on track after this surgery.  I want to exercise again without having stabbing pains up and down my side, I want to run around with my nieces and not care if they jump on me like a jungle gym. I want for my cat to be able to jump on my lap without bringing tears to my eyes (corny i know, but those little paws hurt!) I want to cuddle with my husband on my comfortable side, without feeling one grapefruit push against whatever it's laying on.  Most of all,  I am ready to say goodbye to tutti and frutti and close this chapter because frankly, I am SO over it.  Yes, I'm scared and nervous and emotional about everything that's about to take place. I have had some serious discussions with my doctor about the scary "what ifs," and I have to tell Shawn what direction to give the doctors if those "what ifs" really do happen....but I'm prepared, and he's prepared, and we're OK.  I am finally in a place of feeling really good about this, and okay with this.  At this time, the day after tomorrow, the surgery will be over, how sweet is that?

Let's get the show on the road!

What's Al Bundy got to do with it?

I get a giggle from hubby every time he walks into the living room and sees me laying on the couch.  Not because I might be wearing knee high socks with shorts, not because I'm watching Teen Mom or Jersey Shore, but because I've got my hands in my pants like Al Bundy.  Yep that's right, I said it, hands in my pants.   We've all done it, so don't judge! 

Pain is an interesting phenomena, and I'm still getting used to it.  Also, I'm getting used to saying, that I'm used to it. How crazy is that!?  I've learned to adjust to the pain, in turn, making me "used" to the pain.  For example, at work, I pull out my bottom left drawer so I can raise my leg and can lean back in my chair at just the right angle.  Meetings are difficult because there is no way to adjust to a comfortable position in front of people, without looking super awkward. When driving, I've started taking different routes to avoid rough roads and potholes. I don't really enjoy restaurants these days, because chairs and booths are the worst.  Pretty much, my favorite place is my couch or my bed.  This is where, in the comfort of my own home, I can pull the Al Bundy move and put my hands in my pants.  The separation between the skin and the fabric is a fantastic relief.  I guess I didn't even know that I was doing this until Shawn (a.k.a. hubby!) started pointing this out on a regular basis.  Ha! 

Relief or more grief? This is a question that runs through my thoughts over and over again.  Am I going to experience relief, or more grief?  I am a glass half full kind of person, I am a positive person, and I like to think that I'm going to have great relief. In fact, I have been saying more and more the past few days, that I am really looking forward to surgery.  Still, there is this little voice in the back of my head that chirps, "What if this doesn't work?  What if the surgeon finds endo that she cannot remove? What if she finds cancer? What if she has to remove an ovary? What if the initial incision bursts the cyst and I have toxic fluid running throughout my abdomen? What if I end up with a laparotomy and a 5 inch incision anyway? What if? What if? What if?" I've honestly tried to stop posing these questions to myself, even though they are there.  I'm scared, it's only natural. SO! I have started to view the actual surgery taking place. The surgeon(s) making the incisions, inserting the instruments and performing the actual surgery.  I picture them removing all of the endometriosis. I picture my ovaries being able to "breathe" again, being free from the suffocation of the endometrioma. I envision having less pain, less bloating, stabbing, cramping, twisting, and pulling.  I had my first dream about surgery two nights ago.  I woke up feeling like I had already had my surgery, weeks ago and I was healed.  In my dream, I remember examining my incisions and thinking "huh, wasn't that bad."  This is my hope, to be a few days,weeks and months post surgery reflecting that it was the best thing I've done for myself in a long time.  Why should anyone live in pain?  

I feel so much for those that have been diagnosed with Cancer, Fibromyalgia, MS, Chron's, Lupus, and the list goes on.  I realize that I do not have a life threatening diagnosis. I realize that in the end, surgery will bring relief. I know that I am not the only one to have pain, nor will I be the last.  I have said multiple times that I can understand how people that suffer from pain, get depressed. I can see why people become addicted to pain medication.  Now, I can sympathize with those that live or have lived with pain.   I understand that it's not as easy as just saying "Pop a motrin and you'll feel better." Pain is something that becomes very internal and it's not something you really want to talk about; it's embarrassing, unforgiving, ugly, silent and constant.  I am SO thankful for the support system that I have around me. I feel like my family and friends are my buoys, holding me up, keeping me afloat and I can't thank them enough.  I think about those in my family that have had to endure multiple surgeries, and some that have more to come.  Shit, I'm having a 2ish hour procedure, so if they can get through THAT, then of course I can do THIS!  In two weeks at this time, I'll be writing about this experience from the flip side, and for that I'm so thankful! Until then, I'll just have to Al Bundy my way through it. 

Don't you know that breaking up is, hard to do?

I didn't think twice about scheduling a second opinion about my surgery.  In fact, I had the second opinion scheduled the morning after I found out that I needed surgery.  Why would I NOT get a second opinion?  I had a lot of support about it too.  Some said "I'm sure you can trust your doctor and she knows what is best" and most agreed that they too, would seek a second opinion.  My mind was in overdrive and I did not want to get "google brain."  I've been down that road before... you know exactly what I'm talking about too, googling every symptom, every pain, and before you know it, you've diagnosed yourself with a third world country disease that only happens 1% of the time.  Okay, maybe an exaggeration, but you know what I'm talking about. I needed to think clearly. I needed to know my options.

A few days later I had to call Joanna back. My work had been asking when I might be going out, we had to plan a training schedule, disability.. all that stuff.  Since my doctor was in Grenada, I was simply waiting for a call to get this surgery scheduled. I was going to move forward with scheduling the laparotomy because I simply didn't know what the second opinion would bring.  Joanna "kindly" informed me that the doctor could do the surgery on Tuesday March 6th in Lockport.  I "kindly" informed her that did not want surgery in Lockport, that the doctor had offered up a different facility but advised me it may take a bit longer to get in there. I was willing to wait a few weeks in order to be at the facility that I was most comfortable with. I AM the patient.  She was agreeable and said she would call me back.  Not 15 minutes later I received a phone call informing me that she could not provide the surgery at the facility of my choice and it was March 6th.  No. NO NO NO!! You do not have the right to just tell me when and where I AM getting sliced open. She was shocked, she was offended, she was rude. I informed Joanna that I would wait until my doctor got home from her trip, and discuss it then.  I got a little teary standing in the hallway at my work.  Really? Why was this so difficult?  Did I want her performing a surgery where she didn't want to be? Did I want her in an environment that SHE was not comfortable? After all, she was doing the cutting. I was not mad at my doctor, I was mad at her staff for the insensitivity. I was confused about what to do, was her comfort, or my comfort more important? I was saddened. I felt this falling apart before it even started.

All I could do was be thankful that I had scheduled a second opinion.  As soon as the doctor walked in, I knew I loved her. I felt this twinge of guilt. I loved my current doctor. Shit. What was I doing? I should just trust my doctor. She knows me, she knows my issues, she's been seeing me forever, how dare I cheat on her?  The new doctor was so sweet, so warming... she asked me what was going on. I had verbal diarrhea, I spouted out everything that was happening over the past year, down to the exact size of my grapefruits.  She looked at me and said "You are an amazing historian."  She then picked up my medical records and said "You know Amanda, I wasn't sure you were correct when you gave me the centimeters of your ovaries, but you were very correct, wow.. no wonder why you are experiencing pain."  I let out a big SIGH of relief.  Good, she doesn't think I'm crazy.  She went on to explain that the most common practice is to provide a laparoscopic approach to this type of surgery.  She practiced at the facility of MY choice. They make 3 small incisions and insert lighted scopes.  They pump my abdomen with CO2 to provide ample space to work. The surgery will last 2ish hours and I would be able to go home the same day. I should only be out of work 2 to 3 weeks.  My mind was spinning. I point blank asked her why my other doctor would want to perform a laparotomy, with such high risk? She said she honestly didn't know, that perhaps it was just what she was comfortable with.  She explained that I may have the option to have a robotic laparoscopy in which she would control the robot, but the robot would actually do the surgery. (what?)  I sat there almost an hour and a half, woman to woman, getting a full on explanation about my situation and my surgery.  It was the first time I was told I had endometriosis.  It was the first time I could breathe. It was the first time I could see past surgery, my summer, returning to work, returning to a normal life.  I decided at that very moment, that her healing hands would be performing my surgery.  Before she left the room I hugged her with tears in my eyes thanking her for her time.  She advised me she wanted to discuss my case with her husband (he too, a gynecologist) and together they would decide if I was a candidate for robotic or normal laparoscopic surgery. Double the expertise? Sweet deal. I was again, waiting for a call from the surgery scheduler.

Two days later I get a call from Joanna (old doc's scheduler), while I'm walking around Walmart with my mom.
"Hi Amanda, sorry it's so late. This is going to sound weird, but can you go see Dr. So and So tomorrow? The doctor wants you to see him for a consult for a robotic surgery. Your appointment is at 2"
Crickets.
"Joanna...I... I had to get a second opinion, and the last time we spoke you seemed unwilling to work with me. The last time we spoke I was being cut open for a major surgery. The last time we spoke I could not choose where I wanted the surgery.  I saw a new doctor for a second opinion and I have decided to stay with this doctor."
Crickets.
"So.. are you saying you want me to take you off the surgery schedule?"
"Yes, Please"
"Okay."  Click.
!!!!!!!! You're going to call me on a 2 minute phone call and tell me I am now having robotic surgery with a different doctor and play it off like it's no big deal?
I was so flustered, so thrown off. What changed? Why now? Ugh. That totally sucked. Do I call the doctor tomorrow and explain myself? No, she should be calling me. Surely she will call me to ask what had changed and why was I not getting surgery? Yes, she will definitely call me.

Two weeks later, much to my surprise, I answered my phone to the sweet voice of my new doctor. She informed me that she and her husband had completed a review of my records and they feel a normal laparoscopic surgery would suit me best. They were both going to be my surgeons. (double the expertise, double the cost!) She had also done her homework about the "other" hospital that I could have potentially been.  That hospital simply just did not have the tools and equipment to provide the surgery. Wow... that's all I can say. I would have opted for a more risky surgery simply because that hospital did not have the most up to date equipment?  I know this may come off as bashing my old doctor, but I cannot understand why she would not want the best, least invasive procedure for me.  Insurance? Comfort? Familiarity? Whatever it was, I was happy with my new plan. I'm sure she will explain herself when we talk.  My surgery has been scheduled with my new doctor(s) for March 17th at 1 pm, laparoscopically, at the hospital of my choice. I feel relieved, I feel like I can move forward.

I have not heard from my old doctor. I also, have not contacted her either. I feel a little guilty still, a little sad I haven't gotten a chance to explain myself to her. About a week has passed and the need for closure has also subsided. I am my only advocate. (and hubby, and family and friends..) but only I can make these decisions.  So in the end, breaking up, wasn't that hard to do. I know that I have made the right choice.



A few things about a second opinion:
-Get One!
-BE PREPARED!!
-Get all of your own medical records. This means countless calls for your own information.  Stay on top of them, because the first few times you request your information, you won't get it.
-Do your homework.  Is your surgeon a specialist for what you have been diagnosed for?  Is your surgeon board certified? Is your surgeon a member of the A.M.A?
-Get facts. How many of these surgeries have they performed? What is their success rate? I'd rather have someone that does this twice a month, rather than twice a year.
-Talk about this with your family and close friends. I COULD NOT have done this without their support.
-Look up words you don't understand. Ask when something doesn't make sense.
-Breathe.  Take breaks. Don't overload. (ha)
-Call your insurance company yourself to get your benefit coverage and deductible/co insurance information.
-When you've done all of the above, do it again.
-I will help be your advocate; friend, family or stranger, I am here to help you.

For those of you that personally you know me, you know that I may have gone a little beyond what another may do.  I went so far as to ask what type of surgical instruments would be used on me. But like I previously eluded, i NEED to KNOW these types of things, so there are no surprises. I am positive, I am excited to be pain free ( SO EXCITED) I am also realistic. Complications can happen and I do not want to be heartbroken if I wake up with a 5 inch incision and one ovary short of a pair. To some I may be crazy, overboard, paranoid. Ya know what ? I don't really care :)

Thank you for reading!

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.