Sunday, October 29, 2017

The Big C

Late last year my grandmother decided she wanted to get some things checked out so I spent some time running her to doctors to see what was going on with her.  She wasn't feeling like herself and had noticed some things so it was time to get everything checked out.  One doctor visit told us that she had a spot on her liver and knowing that she had never been a drinker we were a tad worried.  We stopped seeing the Dr that found the spot and made an appointment with her oncologist.  Back in 2013 my grandmother had been told that she had a lung cancer and had surgery to remove the lower lobe of her left lung.  She had a couple follow up appointments with the oncologist and stopped going.  Fast forward 3 years and we were getting ready to make a new appointment to talk about the spot on her liver.

My grandmother is by far my best friend.  I tell her everything and she turns to me when things get sketchy.  She told me that she thought her cancer was back and she wasn't sure how it was going to go, but she knew deep down that it wasn't going to be good.  I sat on that information for awhile.  She didn't want to alarm anyone in the family until we had all the information.  I remember telling my best friend the weekend before the appointment to throw some extra prayers in because we knew it wasn't going to be good news.  My grandmother let me tell my cousin to be prepared for bad news and we all waited for the Dr appointment to arrive.

Valentines Day, a day I absolutely dread for many reasons.  I detest that day, hate it really.  And February 14, 2017 proved to be no different.  We arrived for her doctors appointment preparing for bad news but we were still optimistic that things might go in our favor. I remember when the doctor came in and told us that the cancer had returned.  I sat there shocked, it wasn't what I wanted to hear.  I looked at Nanny and knew that her faith wouldn't let her down and that we would somehow get through this.  Most people know that you can remove parts of the liver and live perfectly fine.  I had told Nanny on the drive to the doctor office that I would give her part of my liver if I needed to and I absolutely would have done it, no questions asked.  We looked at the doctor and asked when we could schedule surgery and he looked at us and point blank said that there wasn't going to be much we could do.  Her cancer came back with a vengeance and we were now staring down a horrible battle.

I've cried on my grandmothers shoulder numerous times in my lifetime and I have seen her cry very few times.  She has always been the rock in our family and the one that everyone turns to when things get rough.  When the doctor told us that my grandmother had Stage 4 cancer I saw my grandmother at the weakest I had ever seen her.  The tears that flowed out of her eyes were completely heartbreaking.  That's not an image I will ever get out of my mind.  My grandmother was just told that without proper treatment she would be gone in 3 months.  How does one person cope when they are told that all of a sudden their expiration date has been set?  I wanted to cry, I wanted to scream and yell and cuss and cause a scene because I wasn't ready for my grandmother to be gone.  She is too young.  She is a fighter.  She is my rock.  She is our families rock.  She can't go.  A few tears slipped out but sitting there seeing my grandmother break down made me hold everything in and be strong for the one person that has ALWAYS been the strong one for me.

I asked the doctor some very important questions and got all the answers I needed at the moment.  We were told that without proper treatment her life expectancy was 3 months, if she qualified for the medicine he was suggesting, she could get an extra 19-20 months.  We prayed right then and there that the good Lord above would make sure that she qualified for the good medicine so that we could get extra time.  We set up an appointment to get everything tested and get everything rolling.  Leaving the office and making the drive home to tell her husband, my Papa, what the doctor said was horrible.  That 45 minute drive was the longest driver I have ever made.  I immediately took time off of work and set out to get things taken care of that my grandmother so desperately wanted to get handled quickly.

We got back to her house and set my grandfather down and told him what the Dr had said.  He didn't take it well.  It wasn't something he wanted to hear.  We decided right then and there that I would take the week off and help them get things settled as there was a lot that needed to be done.  Phone calls that needed to be made, arrangements taken care of, documents files, you name it.  We had a lot that needed to be done.

I went home that night to try to figure out what was going on.  I needed to process everything the Dr told me and I needed to do it alone.  I remember calling different people and giving them the news because Nanny didn't want to talk to anyone that day and who could blame her.  I called a list of people she wanted me to and the last call I made was to my best friend Christina.  That was by far the hardest call I had to make.  I knew that my weakness would come out and I knew that she was the only person that would understand what I was feeling.  She was going through the horrible cancer deal with her dad and how she was able to always be so strong I will never understand.  Her family absolutely adores my grandparents and treat them as their own.  They have come down here to help mow the yard, spend time with them, play games, go hunting and fishing and just spend quality time with them.  Telling her that Nanny had cancer was gut wrenching.  I didn't cry like I thought I would.  I had some tears come out but not the gut wrenching cry that I thought I would have, that would come later.  She was able to talk to me and keep me calm enough that I was able to make it home and get some sleep before I had to drive back down there and face everything head on.

The next day I woke up early and got around to get back down to the lake and to get the ball rolling on what needed to be done.  The hardest phone call I had to make that day was to the funeral home.  Nanny has always told me what she wants done and I had the chore of making sure that everything was written down with the funeral home.  That is by far not an easy call to make.  I hated it, hated every minute of it.  I don't want to think of a world where my grandmother isn't around, let alone have to call a funeral home and get her funeral lined out.  But because I love her and respect her, that is exactly what I did.

The next few days are all kind of a blur.  We had many calls to make, many people to talk to, many many things to work out.  It seems like a never ending list when you stop and think about everything that needs to be taken care of.  We had a couple weeks to go before we could get the biopsy and results done and we realized how horrible we are playing the waiting game.  When we finally got all the news we were waiting on we became hopeful.  My grandmother luckily qualified for a new medicine and we couldn't thank the Good Lord enough!  Her oncologist told us that out of 61 patients he has tested, she is the first one that met all the requirements for the meds!  We were hopeful!  We have God on our side and my grandmother is a fighter, she will not go down without a fight!!

My grandmother has been so brave during all of this.  She is fighting for her life but she isn't letting it get her down.  I've seen her break down and cry and give up a couple times and when she did that I lost it.  To see my grandmother questing if the fight was worth it and questioning why she was here broke me, I lost it and I cried.  I finally let the tears come and I cried, and cried a lot.  Its hard to see your grandmother break and feel so helpless.  I can't do anything for her.  I can sit by and hold her hand and be there for her and I can pray, but I can't heal her, only the Man upstairs can do that.  I have to put my feelings aside and be strong for her and be the rock she needs me to be.

So far we have been really blessed.  We are leaning towards her being a MIRACLE!  She has done so well on the medicine that the doctor gave her and he is absolutely astonished at how well she is doing!  He told her that her masses are shrinking and that she is doing better than anyone thought possible.  We are at the 9 month mark and she is going strong!!  She now only sees the doctor once every other month and she just keeps trucking along!  She really is a miracle in our eyes and God has blessed us beyond belief with the time He has given us.  Its not her time to go Home, she still has a lot to do here on Earth!!

Someone asked me how I was able to be strong through all of this and honestly, God is the only way.  I know deep down, that when my grandmother loses her battle, she will be going Home and she won't hurt any longer.  I know that she will be with the Lord and that is the one thing that will make her completely and 100% happy.  I can't be sad about that!  She will be where she wants to be, she will be Home!  I will miss her more than ever and will cry and cry and cry some more.  She is my best friend.  She is my grandmother.  She is my role model.  She is the woman I strive to be.  She is amazing in so many ways.  But, we are all human and will have to go Home at some point. 

Wednesday, October 8, 2014

To Hell and Back

If you have any negative comments please keep them to yourself, I'm not sharing this with you to be judged, I'm sharing it because I hope that this will help people understand why I'm not the same person I was when I moved.  Now I'm not the best person with words, but this is the best I could do.

On a completely different note it was brought to my attention today that I am not the same person that I was before I moved.  Wow, didn’t take a genius to figure that one out!!  Well there are very few people who actually know what happened while I was in Hydro.  I guess this is my chance to set the story straight and put everything out there so people know why I have changed and why I’m not the same person I was when I moved.

I had completely given up hope that I would ever find someone to marry so when Chris came into my life I was completely shocked.  Yes things happened fast but one thing is for sure, I don’t regret a single minute that I spent with him.  I know some people may ask why I feel that way and the only answer I can give them is, when you love someone completely and the way that I loved him, you do things that you may not do in any normal situation.

I fell madly in love with a man that I seriously thought would be my forever.  I gave up everything I knew and worked for to be with him and I didn’t bat an eye in my decision.  Chris and I had a connection that I had never felt before and when we were apart I literally ached to be around him again.  We would chat all day every day, between snapchats, text messages, phone calls and skyping, we were in constant communication with each other from day one.  I honestly can say that it was love at first sight.  We had talked for a bit before we actually meet and I never believed people when they would say you will just know till I meet him.  I had thought I had been in love before with my first love, but the love I had for Chris was completely different.  I would have gone to hell and back for him and eventually that is what it felt like.

When I first moved to Hydro to be with Chris, things were really good.  I was trying to get the house all put together and get settled into my new job.  It was an adjustment not really knowing anyone and being alone for the majority of the time.  I think I spent a lot of my alone time on the phone with friends and my grandparents so I wouldn’t feel so isolated out there!  Yes I had one friend out there that I worked with but she had a son and a life so we didn’t see each other much.  I spent some time with his family when he was home and I can honestly say that I was super excited about spending holidays with them.  Him and his sister were super close, which is something I have never had, and he was very close with his parents.  The first couple weekends I was there we spend time out at the lake with his family and I really felt like I hit the jackpot with what was supposed to be my in-laws!  They were amazing!

This is where my happily ever after when to hell in a hand basket.  Our world was turned upside down when his ex-wife passed away just 3 weeks after me being there.  There are things that I’m going to say that some people aren’t aware of yet and I honestly think its going to be easier to say it here than to repeat the story a million times.

When the ex first passed away things seemed to turn.  It wasn’t all of sudden, it took time for things to get bad and I fought till the bitter end to make things better.  It was little things at first.  Text messages weren’t nearly as long as they had been, snapchats seemed to slow down but we were still in communication with each other so I had hope.  He was still telling me he loved me and we were still planning on getting married, just not at the time we had originally planned. 

Chris worked away for days at a time and the longer he spent away the worse he got.  Originally we had said that we wouldn’t go more than 2 weeks without seeing someone.  When you are with someone who works in the oil fields, you get used to the schedule of them being gone for long periods of time.  The first complete 2 weeks was coming up and I was planning on going out to where he was finally given some time off.  That’s when things went south and were never the same again.  We had an argument over the fact that he wanted to pay for the funeral and refused to talk to me about it.  I’m sorry but when we got engaged I was under the impression that decisions such as that would be made together, I mean we were planning a wedding and planning on spending the rest of our lives together, this was not the best way to start.  I finally stopped the debate because I knew that it wasn’t going to get me anywhere.  I figured I’d let him work this out within himself and then things would get back to the way they were.  Boy was I ever wrong.

The silence started slow at first, the phone calls still came but they were more spread out than they were originally and the text messages took longer to get answered.  I waited patiently for him to figure things out because he repeatedly told me over and over that he still loved me and wanted me to be there.  Over the course of a month, things went from absolutely amazing to complete hell.  He had completely stopped talking to me on the phone and then when  I had a friend come out and help me paint the house he got way bent out of shape because he thought I had done it to erase the memories he had made before, that was so not my intention.  We had discussed at great lengths as to what needed to be done at his place and had agreed that I would paint and get new carpet while he was gone, well that was before we entered hell!  After things went bad he just completely forgot everything that we had discussed and things went south very quickly.  After he blew up about me painting the house, things were never the same.

Now some people were already telling me that I needed to leave and go back home but I couldn’t.  I couldn’t walk away knowing that there were things unfinished.  I wasn’t ready to give up, not yet.  I had it in my head that if I was patient and waited that he would come back to me, well that never happened.  I asked him numerous times if he still loved me and wanted me there and for awhile the answer was always yes, he didn’t want me to leave.  So I waited as best I could, although patience isn’t my strongest virtue!  I would sit at home waiting for him to call, waiting for the text messages, waiting for anything, I just patiently waited because in my mind, God had put me there for a reason and he wasn’t ready for me to leave, so I waited and waited.  The days turned into weeks and the weeks eventually turned into 3 months of me just sitting there never knowing what was going to happen.  I never knew what he would be like when he was able to come home, I never knew when he was coming home and I never knew what was around the next corner.
The night that he finally told me he didn’t love me anymore was probably the worst night of those long months.  My world shattered.  Now some people asked me then why I didn’t get up and leave but I still knew that God had me there for a reason and I wasn’t ready to throw the towel in.  I really thought that after time, things would settle down and that we would go back to what we were.  Sadly he proved me wrong and that was never meant to be.  

The last few weeks were by far the absolute worst.  Things had turned really bad at that point and I knew the end was near.  I spent Christmas Eve over at his parents house and was able to talk to his mother for 3 hours.  I learned a lot in those 3 hours and I really thought that things might work out.  His mom told me exactly how he felt about me from the beginning and she could see that he still loved me deep inside.  So I left his parents house knowing that things were going to get better over time, boy was I wrong, really really wrong.

The breaking point was when he came home 2 days before New Years Eve.  Things were bad and I knew at that point things would never get any better.  The part that hurt the most was the fact that he didn’t even think enough of me to put any thought into my Christmas present.  I’m not big on getting presents and I absolutely love giving gifts, to me its not a big deal if I don’t receive presents, to me its not about presents but its about spending time with the people you love, your friends and family.  I wanted so desperately to spend just 20 minutes with him, that’s all I wanted.  Instead, he decided that he would throw some cash into a blank card and leave it on the counter, the card said absolutely nothing, it was completely blank on the inside and he barely scribbled my name on the envelope.  I was completely broken at that point, I couldn’t take anymore.  I finally told him he had to make a decision, either let me stay and work things out or we needed to go our separate ways, he chose to go his own way.  He agreed to give me some time to get my notice in and find a new place or get moved back to Tulsa, I just needed time to figure things out. Unfortunately, I didn’t get that time.

Now let me say, after sitting there alone for the majority of 4 months and having the one man that I would do anything for and give up anything for completely shut me out, I was completely lost.  I had lost the person that I had fallen madly in love with and had planned on building my life with.  I had given up a career, a home, the life I had built, everything, I had given up everything to be with him.  Even when he was home from work he wasn’t actually home.  I spent night after night sitting there crying.  I have never cried so much and hope that I don’t ever go through that again.  I was broken.  My “friend” that was down there had just about completely shut me out of her life, looking back on the situation, I think she knew what he wanted and just didn’t know how to tell me.  I was 3 hours from my grandparents and an hour and half away from my best friends.  I literally had no one there, it was just me and my dogs.  So for the majority of 4 months, I sat there crying day after day.  I dreaded the times when he came home because I never knew if he was going to ask me to leave or tell me that things were going to start getting better.  He had broken me, I had never felt so horrible in my life.  I can’t explain how horrible I felt, I was lost, alone, hurt and confused.  There were days that I would just close myself off and not talk to anyone.  There were days that it took everything I had to get out of bed and go to work just so I wouldn’t have to sit in the house all day alone.  Yes there were times that I wanted to leave and that I really thought about leaving, but I still wasn’t convinced that God wanted me to leave, so I stayed and cried being miserable the entire time. 

I had felt like I had worked so hard to overcome the life I left behind in OKC and I had lost every part of me after I moved out to Hydro.  I had finally found peace in my life before and after everything that I went through when I was there had broken me and pushed me further away from the old me that I had worked so hard to overcome.  I was completely miserable and depressed.  I had never felt so defeated and worthless.  Chris never hit me and was never verbally abusive but he was emotionally abusive without even realizing what he was doing.  He was in a complete fog over his ex-wife that he literally had no other focus in his life than trying to fix things that couldn’t be fixed.

My weakest moment came on January 5th.  I had completely given up all hope and I had literally thought that I was the reason things were so bad between us.  I thought there was something I had done to completely push him to the point he was at and I couldn’t handle it and I made a huge mistake.  If you have any negative opinions on what I am getting ready to share then you can just keep them to yourself, because I don’t need or want to hear them.

I was in the process of packing up everything to move it all back or somewhere else when I reached my breaking point.  I had stayed in bed a lot longer than I normally did and when I got out of bed, my foot had fallen asleep and I actually fell into the door and then to the floor, I had hurt myself and he was sitting just on the other side of the door and couldn’t even bother to ask if I was ok, he just ignored me.  So I spent a few minutes packing up that day and then I just couldn’t take it.  I had been crying non stop for days, hadn’t slept well in weeks, and hadn’t eaten very much and had lost 7 pounds in 4 days.  When I say I was lost and broken, I was literally lost and broken and at the point that I couldn’t take it anymore.  I wanted relief and I wanted out.  My answer to this problem, take a handful of pills and cry till it stopped.  Yes, thats what I said, I took a handful of pills and went to lay day and wait for it all to end.  I called my grandmother to talk to her again and after she realized something was wrong she got off the phone and called my “friend” to come help me.  Well that “friend” was way to busy taking a bath to even be bothered with dealing with me.  So the next few hours were a nightmare.  My “friend” called Chris and he called the cops because he couldn’t be bothered to help me either.  The cops came over, I was loopy and they took me to the hospital.  Up until this point, very few people actually know what I did and even fewer know the real reason why I did it.  I am completely ashamed and embarrassed over what I did and didn’t want people to know.  I learned a lot that day about Chris and my “friend”.  I learned that there are very few people that you can turn to in your darkest hour and know that they will be there.  When they hauled me off to the hospital I went alone.  My best friend Christina and her husband got there as quickly as they could and didn’t leave myside the rest of the evening.  They were my rocks during the worst time of my life.  I don’t know how I would have handled things had they not been there.  After I was hauled to the hospital in town, they sent me to Norman to be evaluated, luckily they let me go that night and I spent the rest of the time crying on Christinas shoulder because I was lost and broken.  I still can’t get through the story without crying and as I type this I’m sitting here trying to fight the tears back. 

When I got back to Tulsa I threw myself into my job, I pushed everything aside and didn’t want to deal with it.  I cried every day and didn’t understand why things were the way they were.  I didn’t know how to face what I had done, how I felt and still haven’t really spoken about it to anyone.  There are times that I still cry about everything that happened and its not so much over him, but over me.  I lost the person that I was, the person that I fought so hard to become.  The person that I never thought I would be.  At some point in those 4 months of me being gone, I lost the person that I loved, I lost me.  I know I am not the same person I was when I left, and honestly I don’t know if I will ever get back to that person.  I know what I went through isn’t nearly as bad as what some other people are going through but at the time, it was my own personal hell, and sadly I’m still living with some of the consequences today.  I have yet to forgive myself for the decision that I made that day, I’m still embarrassed over my actions and feel extremely guilty for the pain I put my loved ones through, because at the time, the thought of what they would have to go through never crossed my mind.  One day after I come to terms with what I did, I hope to be able to help people who are in that same situation.  Pay it forward in a way.  I had an amazing family that took me under their wings and never let me go.  Without the Fosters stepping up that day, I honestly don’t know what I would have done.  God saw to it that there was someone there for me when I hit my rock bottom and I will be forever grateful for them and I don’t know if they will ever know what it truly meant to me to have them by myside.

I hope that with me explaining as best as I can what my life was like for those few months that people can understand why I am the way I am now.  4 months can completely change a person, for better or worse, and sadly mine was for the worse. 


I've been working on this blog for awhile so it may seem dated, I keep starting it over and over but finally decided to post it today!

So its been over a year since my surgery and I have failed in my updates of this journey!!  I had every intention of keeping my blog updated as I went through all these changes but life got in the way and I got busy!!  So here is my update of my first year in menopause.

I gave a little update after my surgery and my first two doctor visits after the surgery and stopped.  There were some things that happened during that time that I didn’t mention in my post.  My mother and grandmother have always had a problem with their blood pressure and my sister did during her pregnancy but for some reason (which I’m grateful for) I’ve never had a problem with that, that is until I started taking the hormone pills they gave me after my surgery.  My blood pressure sky rocketed!  The first post op appointment my dr was concerned about it and told me to watch it, we had already planned on switching my hormones but we were hoping to wait till I took all the pills.  She was really surprised that the hormone pills would cause such a problem so she told me to take my bp before I took my pill and then after I took my pill, well before I took my pill it was low, which is really normal for me, then after I took the pill, it went up, drastically high.  Really was afraid that something might go wrong so after a few days I called the dr back and she told me to stop taking the pills and to go ahead and switch to the new patch.  I felt a difference immediately and my blood pressure finally settled back down.

The first month seemed to go by fairly good.  There were times that I was emotional and there were times that the stupidest things would upset me.  There was one point I cried because I was out of popcorn!!  The hot flashes and the insomnia were not fun to deal with at all.  I slept crazy hours the month I was off work.  The first few days after being home from the hospital I slept normal hours but then I slept odd hours.  I would sleep for a few hours and then get up and be up for the majority of the night, then I would sleep for hours during the day, not very much fun!   I did get bored during that month off work, I’m not made for sitting around, I’m made to be active!  If I would have had the energy to go back to work early I would have!!  My sleep still hasn’t leveled out and I guess it probably won’t for a long time, if ever again, but at this point, I wouldn’t know what normal sleep is so I guess its no big deal anymore!

For the most part, my patches held out in regards to the hot flashes and what not but here lately it has gotten to the point that I don’t think they are working anymore.  I’ve got an appointment coming soon and I’m going to have to have her adjust my hormones again and hopefully I’ll level back out.  Fingers crossed!!
One of my worries after I had my surgery was the fact that I knew at some point I was going to have to face friends and family getting pregnant and them telling me.  Personally, I’m over it!  I’d be lying if I said that I’m completely 100% happy and not bitter that its not me.  Seeing the facebook posts, tweets, instagram pics and snapchats (yes snapchats), kinda bums me out.  I knew that I was always going to be facing the fact that people are still gonna be having babies but I just didn’t realize I would learn of the first friend getting pregnant so soon and in such an insensitive way.  I was chatting on the phone with the guy and I get a snapchat, well I couldn’t open it because I was on the phone and once I get off the phone, I see that it’s a positive pregnancy test.  My heart sank.  I love the person that sent me the snapchat, but at the time, that was the most insensitive way to tell someone who just had a hysterectomy that they were pregnant.   I still don’t believe that that hurt has gone away.  I mean really, a snapchat?  Luckily they only stick around for 10 seconds or I would have probably broken my phone or something.  I need to say here that I’m not mad at my friend anymore over the snapchat, had it not been for my recent surgery it would have been a clever way to tell me you were pregnant, at the time, I was hurt beyond belief, but now, I’m ok!  I love my friend and her amazing baby that she brought into the world and I’m excited that I have another little one in my life calling me Auntie Barbie!

The only person that I was completely excited to hear was pregnant was my sister.  Hearing her pregnancy made me happy, complete miracle!  After she had Coop she was told it was probably never gonna happen again for her and then bam, here comes baby #2!!  Such a blessing, I can’t begrudge her because well, it’s a damn miracle!!  I’d still be lying if I said there wasn’t a part that wasn’t jealous, because I am and that was only the second time that I regretted my decision to have the surgery.  Regardless of that, I’m completely stoked that I’m going to be an aunt again!

So I mentioned my sisters pregnancy being the second time I regretted my decision so I should say my first time I regretted the decision is when I met the guy.  I guess since I had decided that I was probably never gonna get married, meeting him threw my whole life into a tailspin.  He was the first guy that I truly wanted to get married to and knowing how much he wanted kids made me really question if I had made the right choice, didn’t matter at that point, but I felt horrible for taking the possibility away from him.  It took me some time to come to terms with the fact that I wouldn’t be able to give him the one thing that he wanted more than anything but after much discussion with him we decided that we would adopt and just go from there.  As most know, that never happened but at the time I was completely excited that I was going to get the option of actually being a mom! 

Well after everything happened with the guy and I moved back my system just wasn’t the same.  My hormones were running wild and I had no control over them whatsoever.  After 2 hormone changes I’m hoping that I might be getting settled, but one never knows.  Seems that my next challenge in life will be finding the correct hormones for my system, a journey I don’t look forward to!

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!

Sunday, March 3, 2013

Scared to Death

When I was a kid I had my whole life planned out.  Somewhere along the way my life didn't turn out the way the I thought it would.  In my mind, I would meet the guy I was gonna marry when I was 23, be married by 27 and if kids were to be, then I would have them before I was 30.  In reality, I'm 30, forever single and trying to face the fact that I will never have kids.  There have been so many things running through my head this last month or so that has caused many sleepless nights and has me questioning everything. 

Infertility isn't talked about.  Its kinda like the elephant in the room and no one wants to discuss it.  No one stops to think how someone feels when they receive a baby shower announcement in the mail, hears a friend say they are expecting or what its like to sit in a waiting room in the doctors office with pregnant women all around.  I always put a smile on my face when I hear a friend say they are expecting but deep inside its absolutely killing me.  Knowing that so many people can get pregnant and not think twice about it is devestating.  I always dread going to the doctor because 9 times out of 10, they put me in the exam room that is right next to the ultrasound room and all I can hear is a babys heart beating.  I want to be happy and excited when I hear all these things but it just breaks my heart.  Even when my sister told me she was pregnant there was a bit of jealousy in me, sad I know.  One emotion I didn't count on when I was preparing for this surgery was the sense of lose.  I have a bit of mourning that I am dealing with and I don't know if anyone can understand it.  Its the lose of knowing that I'll never have the excitment of looking at a pregnancy test and seeing a positive sign, the lose of knowing that I'll never feel what a baby's kick is like, the lose of knowing that I'll never have the excitment of seeing my baby on an ultrasound screen and the lose of never knowing what its like to be able to tell someone that I'm having a baby.  I have failed at so many things in my lifetime and now I'm failing at the ultimate thing every woman is put here to do, have a child.

I can sit here and say that I've accepted the hand that I've been dealt and on most days I'm fine, however, there are some days that it just kills me.  My emotions are completely out of whack right now and will not be stable anytime in the near future.  I feel sorry for everyone that is going to have to deal with me after my surgery.

The one thing that scares me the most is the not knowing.  I have no idea how anything is going to turn out, and for me, that isn't good.  I'm a planner and a thinker (although that does get me in trouble sometimes) and now I feel like I'm staring down the barrel of a gun and have no idea what the future is going to hold.  My biggest fear is that I'm not going to feel like a woman anymore.  Growing up I was the tomboy in my family and now that I am a woman and finally feel like one, I'm going to lose that.  Everything that I love I'm going to lose.  How do you come to terms with that?  I'm scared of what the long term effects will be from being put on hormones at such a young age and I'm scared because I know this surgery is not a cure all for me.  I know that there is a chance that the endo can remain and that there could be more surgeries in my future.  WebMD is not a friendly website.  I know they probably meant well when they set that website up, but all it does is cause stress and worry for people.  I've read some horrible stories about women that elected to have a hyster and then things just went downhill for them.  One lady has had 9 surgeries in the 6 years since her hyster, 9 SURGERIES, holy canolie, who can do that?  I'm down right terrified that that will be my case.  I mean seriously, if something could go wrong, it will with me.  My body has never responded to things the way that it should so why would it this time? 

I sit here and wonder about all of these things but I know deep down that I'm making the right decision.  I can't live my life in pain anymore because at some point I have to start living the life I was meant to have, not the life that I have on pain pills and heating pads.  Quality of life has to come into play at some point.  This next month is going to be the hardest month I've ever had to face and is going to be very emotional for me.  The closer my surgery date gets, the more I start freaking out.  I knew going into this that there were going to be days that I would second guess my decision but I didn't realize that I would have this many days.  I fully believe that this is my path in life, but there is still a part of me that thinks WHAT IF, but one thing I've always said, you can't live your life thinking about the what ifs, you won't get anywhere thinking that way.  So I'll sit here and cry and feel sorry for myself on the days I need to and I'll suck it up like I have so many times before and just carry on.  I just hope and pray that when the time comes when being around a baby or baby related things, that my friends and family will understand.  Its not that I'm not happy for you and yours, but just remember that I'm still in mourning and don't know how long it will take for me to be ok to be around that.

Thursday, February 7, 2013

Back in 2012

My last surgery was in December of 2011 and like the others before, I went in with an open mind.  The only difference this time, I came out worse than I went in.  My last surgery didn't do anything for me.  I recovered from the surgery fine but the pain was still there and there seemed to be nothing that could be done.  The posts below are posts from my personal blog from last year.  I hope that they show that my decision to have the hyster wasn't done without much consideration, its a decision that I have struggled with since my initial diagnosis.

Friday, January 13, 2012
If at first you don't succeed, try again, and again...
and again and again! This seems to be the way that my life has turned out, or so it seems when it comes to my life with endometriosis and PCOS.

After my last surgery didn't go so well, my gyno threw her hands up in the air and said she didn't know what else to do for me. At first she just told me to get married and get pregnant, my reaction "Why didn't I think of that!" Seriously? I know that she's probably not nearly as frustrated as I am, but sarcasm is not necessarily the best option to have at a time like this. She told me that she thought that the endo had spread to my uterus muscle, and if this was the case, there was nothing more she would be able to do. The only thing she could do, try to help keep the periods at bay, which at this point, she's not doing a very good job at! That new birth control she swore on isn't working like I was hoping, I swear I have had more cycles on that than I did before I got on it! Right now I'm really thinking about having it taken out, the only thing stopping me, the $600 price tag that came with the medicine. She gave me the option of seeing a fertility doctor who specializes in endo or sending me to a pain management doctor, the latter which is not an option because I simply refuse to live my life on pain pills (to many addicts in my family).

Well it took a few weeks to get the call that the appointment was scheduled but it finally came. I have to say something before I continue, before the appointment was set and I was told that I was going to see a specialist I had a very long conversation with my grandmother. At this point she is very much against me ever having kids, she constantly repeats that kids are so much to deal with, your life isn't yours anymore and that if she had it to do over again, she wouldn't have any. She is not someone that is very easy to talk to at times, although at this point in my life, I don't have many options. Anyways, during this conversation I told her that I knew I was going to be having another surgery this year and that I didn't know if I was ready for it. I also told her that I wasn't sure if I felt comfortable going to see a fertility doctor just yet, there is just a feeling of despair when I think about having to go to a fertility doctor. I have been preparing for this for roughly 5 years now, or so I thought. You can think about what the impact of walking into a fertility clinic will be like all you want, but until you walk through those doors, you have no idea. Knowing a little bit about what my sister just went through in regards to IVF, I was scared shitless to go into this place, to make it worse, I was going in alone (which also seems to be the way my life works). Knowing that it is so easy for some people to have children and knowing that half of those people either don't take care of them like they should or just don't give a damn is absolutely heartbreaking for someone like me. I know that when my cousin told me she was having an abortion, I was pissed beyond belief. I didn't understand how someone could do that to a baby! I still don't get it and I still don't believe in it. Anyways, I'm getting sidetracked.....

The doctor sat me down in his office and really talked to me. This is a first that I have ever experienced and I'm highly impressed, note that we are 5 minutes into the appointment! He asks the general questions, why I'm here, what I hope to achieve, where is the pain, how bad are your cycles, etc. etc. Wait, did he just ask me where my pain is? I do believe he did. Not one doctor has ever asked me where my pain is at, they all just assume that I have the same pain that most other people do and don't investigate any further. I think I have just found the best doctor in the world!! Note that we are 10 minutes into the appointment! So I tell him where my pain is and the reaction he has is absolutely amazing. He nods his head and says "That explains a lot", well for me it didn't but he did finally explain it all later in the visit. The round of general questions goes on and he decides that all he is going to do during the first visit is an exam, to which I'm mentally begging not to have, they are extremely painful and I go through this every few months or so, happens way more often than I would like. Exam time, oh boy! Yes the exam was once again extremely painful and there was a point that I thought I would just kick him in the head for making the pain that much worse, I mean my foot was right there in the vicinity of his head after all. Back to the office for more talking and he immediately tells me that I need to have another surgery, oh the joys of being right. He explains that there are nerve endings that are in my cervix and that since my cervix is so severely jacked up that the nerve endings need to be burned off. He is about 99% positive that if those nerve endings are burned, than my pain will cease to exist. Could I be hearing him right? Could I finally get through a month without having to take pain pills? Could I have a cycle without wishing that I would just die and get it over with (not being dramatic, thats how bad the pain is sometimes)? Holy crap, this is music to my ears!! Now I'm fully aware that this requires surgery, of which I am in no way ready for, either financially or mentally, but I have to try something. Living this way since I got my period at 13 has been hell. My entire reproductive system tortures me on a monthly basis and I am just sick and tired of it. He also talked about my acne, my weight problem and some other things that I have issues with, all of which he is hoping that he might be able to correct with the right medication. See the PCOS causes a lot of problems for women, and I seem to have most of them right now! I have to have a bunch of blood tests run and I go back to him in a little over a week to get my results and to have an ultrasound.

So after some consideration, I have decided that the best option for me at this point is to have another surgery and pray to God that this helps with something. At this point there is nothing else for me to do but hope and pray that the pain is minimal before my surgery time comes around. If I was ready for it, I would have my surgery the next available date, but I'm just not ready for it. I still have a long road to go that hopefully ends with a child being born, hopefully my child, but who knows, God may have another direction for my life and I may just not have been informed yet. Until that day comes, I'll stay on the path I was given, try my hardest to not let the bad days get to me and just keep on going, and hopefully I can do it with a smile, even on the days that I'm wanting to rip my ovaries out!

January 29, 2012

The endo doctor sent me for some blood work and let me tell you, I got very sick that day, taking that medicine was icky and it didn't settle well with my stomach! I went back to the doctor this past Monday and got the results of my tests. The one that I was mainly worried about was the one that he waited till the end of my visit to actually tell me! Needless to say, I was a nervous wreck the entire visit. My AMH level is at a 1.3, the response from my doctor was its normal, the response from my sister, yucky! So at this point, I still am not sure what the hell the 1.3 means! The other thing I was worried about was my insulin test which came back showing that I was insulin resistant. So from what my doctor says, my body produces to much insulin and my ovaries are not allowing my body to function properly, its something that is very common in people with PCOS. Now I'm on some medicine to help regulate my insulin and he is also hoping that it will help with my weight problem. I've read many articles stating that PCOS causes obesity. I'm not saying its all from the PCOS, I mean lets face it, it runs in the family and I haven't been as active since I got out of school, even though in school I was always on the bigger side. For the most part I was always happy with the way I looked, really didn't bother me so much that I was bigger, but lately, its really started bothering me. I think it could be the fact that I'm getting older, my clock is ticking very loudly and the fact that I'm permanently single! Regardless of the fact, I have started working out more and I'm eating a lot better than I was. Only time will tell if the medicine and everything else levels my body out, but I can say that since my first doctor appointment and yesterday morning, my scale is down 10 pounds, although I can't really tell a difference in my clothes yet, but I have had a few people say that I look like I'm losing some weight.

March 5, 2012

So the endo specialist told me that I could have this surgery and it would take the pain away and that my life would be so much better, I was so excited about this and really thought that this was the way to go, however, I realized that the doctor was an ass. I was denied coverage from the insurance company because they still consider the surgery to be an experimental procedure, so it was going to cost me over $3000 to have this surgery done. The insurance company did say that I could appeal the decision and have the doctor write a letter stating why the surgery was medically needed. So I brought this up to the nurse when she called and she said that she would ask the doctor and get back to me. Well when she called me she told me that the doctor informed her it was a waste of his time to write a letter because he didn't think that it was going to make a difference. Big problem there. A doctor shouldn't ever tell his patient that their issue is a waste of their time, that doesn't fly. So I told the nurse that it was a waste of my time to continue seeing him as a doctor if that was going to be his attitude. I made an appointment for my original doctor to see what she said. She's going to get all the info from the specialist and then let me know what she thinks. Her decision regarding the surgery will help make my decision about the surgery that much easier.

March 19, 2012

So I have decided that I'm not having the surgery to burn the nerve endings in my cervix. I went and saw my original doctor again and she called me about a week after we talked and she told me that the surgery was still experimental and that there are way too many things that could go wrong for it to be considered successful. She has said that I probably need to see a urologist and that if I wanted to see another fertility doctor then I would need to go to OKC since I have seen the 2 top doctors in Tulsa and don't like them. At this point, I'm giving up fighting. I'm tired of trying everything under the sun and tired of going to the doctor all the time. I've decided that I'm just going to let everything go for now and I'm going to see how long I can go with the pain and then I'll make my decision regarding the hysterectomy. I don't see myself getting married or settling down anytime soon and I'm in no way shape or form ready to have a child right now. I don't want to make a decision right now that will affect the rest of my life without thinking everything through. I've prayed for some insight and a direction to go so at this point its just me sitting here waiting on a sign. Nanny told me years ago that she thought I would have kids in my life but that she didn't believe that they would be mine. She sees me as a stepmother or such. I know that there are other options out there for me so its just a waiting game at this point. However, I'm not going to live with this much pain for very much longer. At some point you have to stop and think about the quality of your life.