Wednesday, April 17, 2013

Reality Check

Today was my 2 week post op appointment and I must say that I'm really glad that I made the decision that I did.  I was all set to just hear about the damage to the ovaries that was caused by the scar tissue and the new endo growth but didn't expect to hear what I did hear.  The doctor is excited as to how well I actually do feel.  For the most part the pain is gone, my incisions aren't healing the way she would live and I'm still having some minor cramping in my back and she says that that will go away in a few months.  My system is still adjusting and healing from the surgery so the mild cramping is to be expected, I really thought I was done with all that crap, however, if I only have to deal with it a few more months I think I'll live!  Thats way better than living the next 10-15 years with this shit! 

In 2012 when she sent me to see a fertility doctor she made a statement that she thought the endo grown inside my uterus muscle and it was confirmed with the pathology of everything.  Adenomyosis is the medical term and this causes a whole other set of problems for fertility.  This makes having babies that much more difficult because the uterus just isn't strong enough to handle carrying a baby for 9 months.  She fully believes that this is where the majority of my pain has always come from.  Where I've had mild to moderate pain at different times of the month, I would always have severe pain during my cycles and regardless of the different birth control options, stopping the cycles never happened and estrogen just increased the problems with the Adenomyosis causing more pain and more damage over time.  Patients that have the Adenomyosis are encouraged to have a family early if they plan on it because there is no stopping the damage once it starts and the longer you wait, the worse your chance is that you will actually have a succesful pregnancy. 

She was really surprised and told me that she felt bad about the ovaries being as damaged as they were.  Its not her fault but she said that the multiple surgeries had caused the scar tissue.  My thinking, one way or another they were going to get damaged.  If not from the scar tissue than by the massive amounts of cysts that developed all the time and the endo growth that just wouldn't go away, scar tissue was the least of my worries!  One thing I wasn't expecting, my ovaries were twice the size that they should have been and were just a tad bigger than my uterus, although she did say this was somewhat common in women that have PCOS. 

The one thing that I've always been aware of is that there was a good chance that at some point in my journey with the endo and PCOS there was a chance for cancer to develop and throughout this journey I've had my blood tested just as often as I've had ultrasounds done.  And although she started her statement off with there is no need to worry it wasn't cancerous, hearing that there was a tumor on my ovary was the scariest thing I've ever heard.  I can't imagine what its like to be told you have cancer and I pray to God that I never have to go through that but my heart really sank when she told me that there was a tumor present.  Dealing with the endo and PCOS and everything that comes with those 2 horrible diseases still didn't make it easy to hear.  I fully believe that the Good Lord lead me down the right path because I could have faced cancer in the future.  I may be a little over dramatic right now but its never easy to hear that you had a tumor, regardless of the test results, its not a feeling I ever want to have again.

My hormones are going to be adjusted in a few weeks.  I'm going to finish the pills that I have, simply because they were so expensive and I'm not going to waste the money, then I'm going to switch to a patch with a lower dose and see if I can finally get some sleep!  She wasn't so worried about the hot flashes because I haven't had so many, but my not being able to sleep was a huge concern.  Hopefully the switch in a few weeks will be successful and I'll be able to get a good nights sleep without having to take sleeping pills!!

The next few months are going to be my real test.  Just trying to get everything adjusted and starting to actually feel normal (if there is such a thing) will be a huge task.  There are still going to be days that I have my little meltdowns, but hopefully they will be few and far between.  I WANT A NORMAL LIFE!!!

Friday, April 12, 2013

Welcome to Hell

This post is taking me longer to post than I thought it would.  I seriously thought I would have the post op update the very next day!  Ha, how wrong was I!!

I'll start by saying, I'm very glad that I didn't back out of the surgery and a lot of questions were answered after the surgery.  The last two weeks before the surgery were very hard on me.  I had meltdown after meltdown.  Most of the time I kept those to myself, no one wants to hear me whine and complain about the same things over and over again.  Over the last few years I have mastered the art of plastering on a smile and carrying on when all I want to do is cry and fall apart.  A few weeks prior to my surgery I told my grandmother that mother nature wouldn't let me get through this without torturing me one more time and sadly I got my last period on the Monday before my surgery.  The bright light in this was knowing it was my last period ever but boy was it ever painful.  Seems like my body knew what I was getting ready to do and it decided that it was going to wreck havoc on me for the next 2 days.  Oh well!  The night before my surgery I was on the way to the pharmacy to get my bowel prep when the doctors office called and said that they might have to reschedule my surgery.  Oh shit is the first thing that went through my mind.  The doctors son was really sick and they were afraid that they were going to have to admit him to the hospital because he was only getting worse.  In my mind, if the surgery was going to have to be rescheduled, then I wasn't going to have it done, it was a sign that it wasn't meant to be.  I patiently waited by the phone the next morning to get the call to go to the hospital.  I told the nurse the night before I needed to know before 9 am because that was when I would need to leave for the hospital being as the hospital is over an hour away and checkin was 10:30.  I got the call that everything was good to go at 8:45 and sadly I was late for surgery!  I was in an absolute panic trying to get to the hospital in time.  Checkin time was 10:30 and I checked in at 10:38.  I was so afraid that they were going to tell me that I was past the time and they cancelled my surgery, luckily they didn't pay no attention to me being 8 minutes late. 

I get in the pre op room and things moved rather quickly once I got in there.  I got my iv, which was extremely painful, obviously I need to drink more throughout the day, and then I saw the guy that was going to knock me out and within 10 minutes of seeing him I was being wheeled down the hall to the elevators to the 3rd floor where my life would change forever.  I talked to the doctor before they sedated me and she told me not to worry and once again went over everything that would happen and then she said she would see me the next day and that I was going to take a nice long nap.  During my pre op appointment with her the week before she said the surgery would take no longer than 2 hours, however, knowing my body, it took almost 3 hours to get everything done.  I remember laying in the recovery area and hearing someone say that they had to cut her open and freaking out because all I could think was great, now I'll be out of work for 6-8 weeks instead of 3-4 weeks.  When I became more alert I asked the lady sitting with me and she said no that wasn't me they cut open and that I had four incisions to add to my already large collection of scars on my tummy.  During this time I remember telling her 3 different times that I needed to pee extremely bad and being told 3 times that I could go because I had a catheter in, each time she sounded like she was getting more frustrated with me!  Come on lady, I just come out of the or and things don't seem to register as quickly as you might think!!  Calm down already!  The other thing I remember during this time is being woken up every few minutes because I wasn't breathing like I should have been.  I would dose off and the nurse would yell at me to wake up and take big deep breathes.  This lead to a night of no sleep for me.  Now its time to get to the room I'll spend the next 24 hours in.

I still wasn't all that alert when they wheeled me to my hospital room but there were 2 things that stood out from everything else.  After they wheeled me off the elevator and down the hall I pass a big huge window, surely they didn't just roll me past the newborn area, I must be dreaming.  Then at the end of the hall I see a poster of a pregnant lady holding her belly and it said something about a special delivery, holy shit, they stuck me on the maternity floor.  What in the hell were they thinking.  Here I am, 30 years old, no kids to my name and I just had a complete hysterectomy and they are putting me in a room on the materinty floor.  When I said something to the guy rolling me to my room he said it was either this floor or the pediatric floor and since my doctor had another patient on this floor, thats where they stuck me.  This was the first time I cried after my surgery.  The nurses kept trying to talk to me and all I would do is look away and kept asking for my grandmother who was still sitting in the OR waiting room waiting to see me.  The tears just kept coming.  My grandmother finally showed up and I started to settle down after a bit and I finally came to completely. I asked my grandmother if she talked to the doctor and all she would say is that it took longer than expected because my ovaries were stuck.  Stuck?  What do you mean stuck?  She said she didn't really know because the doctor just told her they were stuck.  Well, that would be the first question I ask the doctor in the morning.  Chris, Mary and Declan came to visit and brought me some soup and I was so excited!  All the nurse would give me was jello and crackers, so to get some real food I was stoked!  They stayed for a bit and left and then I was left by myself for the next 12 hours, except for the nurses coming in and out.  I really like my overnight nurse, she talked to me throughout the night because I couldn't sleep.  I find it really surprising that her first concert was just a few years ago and it was a Metallica concert, oh I forgot, she's in her 50's and has grandkids!!!  Grandma knows how to have time!  My biggest problem in sleeping is that everytime I dosed off to sleep, I felt like I would stop breathing.  This literally happened every time I fell asleep.  I don't think I slept until around 6 and then the nurse came in at 8 to give me my meds, so I probably got maybe 2 hours of sleep.

The doctor came to visit around 9 and told me that there was a lot of scar tissue and a lot of new lesions from the endo.  Not really that surprising.  I still was very interested in learning about the ovary situation and this is what she had to say, my left ovary was covered with scar tissue and lesions and was stuck to my bowels and my right ovary was covered with scar tissue and lesions and stuck to my pelvic wall.  She said I was in more pain because of the way she had to remove everything with the robot.  Luckily she was able to do it all without cutting me open but she did say she came awfully close to pulling the robot out and cutting me open to get the ovaries out, they didn't seem to want to come out.  The damage was done by the previous surgeries had basically ruined my ovaries.  I learned a few days later when I was with my grandmother that the doctor told her that with the shape my ovaries were in when she went in there, it was highly unlikely that I would ever have had a successful conception.  I'll know more when I go to my post op appointment this Wednesday but she said that I made the best decision that I could have and that she wasn't surprised that I finally asked for pain pills back in January.  She's more surprised that I lasted as long as I did without the pain pills.  Can't wait to see those pictures next week!

This past week being home has been a journey to say the least.  Christina came to stay for 2 days and I'm so very glad that she did.  I was so scared about being alone for a bit and to have her here for me means more than she'll ever know.  Not only could I not do anything, but she was just there if I needed some to talk to.  She left Saturday morning to get back to her family and Kristin came down to spend the day with me cause I just wasn't ready to be alone just yet.  I didn't sleep much the first few days I was home.  I would stay up till 10 or later and then wake up early in the morning and then take a nap, I was probably getting around 8 hours with the nap included.  I don't think I really slept well till Monday or Tuesday.  Monday was my first venture out of the house.  I spent a few hours at my grandparents, I needed to see my dogs.  I think I got over there around 2 and was ready to come home by 6 and I was completely exhausted.  I went out today and didn't stay long but thats a whole other story! 

When I woke up after surgery they put a hormone patch on me and told me it would last a week and then I would start the pills the doctor gave me.  Well I started the pills yesterday and today I had a complete meltdown.  My grandmother was lecturing me on learning my body and figuring out how to tell when this happens, hello, my body just went through a dramatic change and I don't know whats going on!  Its going to take me longer than a week to figure out when these meltdowns are coming and how to handle them.  I cried and cried for hours and felt so empty on the inside.  I know the surgery was the best decision for me but learning how to cope with the emotional outbursts is going to take me a bit.  Everyone deals with their surgery and after effects differently and hopefully I'll get mine under control and hopefully its somewhat under control when I go back to work, because I don't know if my mastering art of plastering a smile on my face and carrying on will be enough, I'm afraid I'll have a meltdown at work.

I want to thank Christina, Kristin, Hollie (she's coming down tomorrow), my grandmother and all their families for being there for me in the days leading up to and following my surgery.  I don't think I could have made the progress that I have if you guys weren't in my corner cheering me on every step of the way.  I also want to thank my friends and family for standing by me and my decision and all the prayers that you guys prayed.  I may not say enough but I love each and every one of you guys and appreciate the time you took out of your schedules to say a prayer for me.  These next few months are going to be rather hard I imagine as I adjust to life on fake hormones.  I hope I don't piss anyone off in the process but please bare with me as I deal with all the changes I'm going through.  Here's hoping that I come out on the other side a happier person!