Monday, April 5, 2010

Don't even know where to start.

This post may not make much sense to you. It may not make much sense to me. I'm at a loss to really put into words where I'm at right now...but I thought maybe if I came here...and tried to write about it...maybe...I don't know...maybe I would have a moment of clarity...maybe?

I went in for the surgery last Tuesday and basically NOTHING went as planned. Those who know me well...or even kind of well can guess...I am a compulsive organizer and I like to have a plan for just about everything. If you have ever been on vacation or even a short trip with know that I come prepared with a color coded and organized itinerary complete with map attachments and coupons sorted by day and activity. No. I'm not kidding. I do not like surprises...good ones or bad ones...and I like things to go just "so-so". Not always convenient in this thing we call life...but that's how I roll.

We had at least three meetings with my doctor before my surgery...not to mention the trip to the specialist where we got a detailed written "plan of action" complete with options that were prioritized by us and then shared with my doctor. We had a special "pre-op" meeting with the doctor where we finalized the surgery plan and then she came to visit me, not once- but twice, in the hospital before I went into the OR. My last words to her were, "I am going to be VERY not happy if this doesn't go as planned." Oh yes, she told me, no worries, everything will go as planned. Sigh.

Basically, whenever the doctor got into surgery, she didn't find what she was expecting to find. I guess that makes part of this make sense. She found something different and she thought it would be contrary to my best interest to proceed with our previously discussed game plan so she decided not to. However, and this is where I am so angry at times I can hardly speak, she did NOT fulfill what she had assured us she would do and leave the OR to discuss the available options with Troy. She simply went in after surgery and told him what she found and told him we needed to meet with her on the 13th to discuss our options. I guess I could lighten the mood a little at this point and share that after she left the room, Troy got out his phone, went into our Words w/ friends game and sent me a chat message: "You are gonna be SO pissed when you wake up." Poor guy. He was probably surfing the web for escape routes out of the hospital and possibly out of the country when he got done playing his next word.

To her credit, the doctor did come into the recovery room and share what she had found herself instead of leaving that task to a nurse or, worse, to my husband. I told her then I was not happy with her. She said she knew. Well. Okay. At least we are all clear on that.

I haven't talked much about what was actually found in surgery to many people. Frankly, a lot of it still blows my mind. Here is a little background: I had been told at age 21 (when I had my ruptured ectopic pregnancy) that I potentially had a uterine disease called "adenomyosis". It is basically the opposite of endometriosis and it is typically diagnosed only after hysterectomy and the uterus must be cut in half to confirm. That is the reason for the "potential" diagnosis. When I was 25 and had yet another emergency surgery, I was told at that point, the diagnosis was likely being confirmed and it had worsened. That is the point at which I was told I would likely never carry a pregnancy to term. The thing about adenomyosis is...usually woman over 40-45 are the ones who have this disease OR women who have had multiple (4 or more) full term pregnancies and deliveries. I, obviously, am neither of those two things.

***Note to reader: STOP READING NOW if you are squeamish or if you have absolutely NO desire to have intimate knowledge of my nether-region.***

During this surgery, I became my doctor's first case of confirmed adenonymosis in a patient under the age of 35, with no children, and with the disease visible upon inspection during a laparoscopy procedure with the uterus intact. It is highly unusual (oh the JOY of being special!). The reason it was able to be confirmed and is visible is that it is extremely advanced and my uterus has degenerated significantly. My disease is also so advanced that it has expanded to outside of my uterus and has developed it's own blood supply, including enlarged, swollen, and basically varicose veins. It is causing my blood not to flow correctly and it is thus back-flowing and pooling into my ovaries. It is visibly worse on the right hand side and this has been indicated as the source of my pain. The resulting secondary diagnosis is "pelvic congestive syndrome". This syndrome is known to produce the following: extreme pelvic pain, often to the point of debilitation (CHECK), multiple miscarriages (CHECK CHECK), unusual/abnormal ectopic pregnancies (ding ding ding), migraine headaches (oh YES), extreme fatigue (before I went on bed rest, in the weeks preceding that I had started having to take a nap in lieu of my lunch break, I was so extremely tired I could not function throughout an entire work day or even a normal "relaxing" weekend day, my sister had become convinced I had mono), extreme lower back and leg pain, muscular pain, and abdominal cramping. Before all of this transpired, I was waiting to get in with a rheumatologist to rule out rheumatoid arthritis before beginning testing for MS due to most of those symptoms listed at the end of the sentence. Basically, this "syndrome" encompasses every little thing I have had wrong with me that had me thinking I was either a hypochondriac or simply insane for the last 18 months.

In one way...we are relieved. We know what is causing my pain. It is identifiable. It has a name. It has treatment options. There are even photos of it confirming its' existence, showing my jacked up uterus in all of its' glory. Ewww. I know. I think Troy was secretly relieved she forgot to bring them with her when she came to talk to him. I doubt he will be so lucky on the 13th. When the doctor brought in the photos in 2003, he was carrying a turkey sandwich on white bread in one hand and the photos in the other. Ahhh. It's the little things we don't forget.

On the other hand. We are furious. The only "treatment" for this disease I have is a hysterectomy. There are no alternatives. There is only one cure. Only one way to provide relief without numbing my body into orbit with tablets and pills and patches and injections. If she would have upheld her part of the agreement and stepped out to speak with Troy...he would have told her to proceed with the hysterectomy immediately. He had his instructions prior to surgery and he had EVERY intention of seeing them through. He never got the chance.

Where does this leave us? We don't know. Troy is insistent we proceed with the hysterectomy as soon as is recommended for my body to endure surgery again. He wants our life back. He wants me back. He is SO tired of me being in pain he is about to pop. It kills him. He did a little magic act tonight trying to take my pain away and put it on himself instead. It didn't work. But I appreciated the effort!

As for me, I feel like I have been spun around in circles, blind-folded, and I don't know what end is up. I feel like I'm drowning and even though I can see the surface of the water...I can't get there, I can't get air. I can't breathe. We had a plan. We knew what we wanted to do. Why she chose not to follow through on that, we won't ever be able to fully comprehend. Part of me is wondering if it is because this is what God wanted for us. Another chance to make a different decision? We prayed about our other decision faithfully and believed we had our answer! I'm at a loss. I'm exhausted. I'm so tired I can't think straight. My body is so tired it can hardly function. My pain has increased substantially since surgery which was to be expected due to the aggravation of the area but it has only served to further confuse, upset, and scare me.

We meet with the doctor on the 13th to review our possible fertility treatment options to try and help us make a decision how to proceed. It seems that my doctor feels that I haven't tried "hard enough" yet??? Before everyone begins to comment that I need to get another doctor for a different opinion and perspective...that is already in the works. We are meeting with her on the 13th to get our options and my biopsy results and then we are switching to a specialist (reproductive endocrinologist) who has treated several of our friends and they have faith in. The doctor I have now wants us to keep trying until we are successful basically. Not sure what her back up plan is for us since we don't seem to be excelling under her game plan.

This is where I might start to ramble...because this is where things start to make no sense to do I get a disease that people over 40 get when I am only 20 years old? I mean, I'm not 20 now, but I was when this started. How does that happen and why is there no explanation? Why did my doctor just blatantly ignore our wishes because she wants something for me that I don't know I have enough left to give?! If I make the decision to proceed with hysterectomy because I CANNOT. TAKE. THE. PAIN. ANY. MORE. Am I doing that because I am weak? Because I am not worthy? Because I am selfish??? How unfair is it to Troy that I make a decision to have a hysterectomy because I don't know how much more I can take??? Unless you have lost a child, you can never fully understand the loss that is attached to that and the EMOTIONAL toll and PHYSICAL toll that is pounded upon you. How many times you relive it. Wondering what YOU did wrong. Why YOUR prayers didn't work. What YOU could have done differently. Why God doesn't want to give YOU a baby. When you pick out names in a baby book and write them on a piece of paper like a 6th grader writing Johnny B Good's name next to hers in curly hearts and flowers and then your husband comes home from the hospital first and hides all the baby books and the little baby blanket and the papers with the names in a closet so you won't find them and have a freak attack when you realize that baby- your child- is never coming home. That you don't need that baby blanket. That the name you picked out that you loved so much can't be used again because it isn't fair to the baby you already loved so much you never even got to see, not even on a sonogram because the doctor wouldn't show you the monitor and just stared above your head and patted you on the knee with a gloomy look and turned to your husband who was fighting back tears and said "Drive her to the hospital. I'll meet you there." How many times can you go through that before you should really just be declared mentally insane and locked away forever? Why does my doctor think I haven't gone through ENOUGH yet? Am I just too weak? Too frail? Too....what? I don't even know.

I won't ever know why she made the decision she made on Tuesday. Perhaps it was to save us from ourselves. All I know is what we thought was a done deal is no longer even close. Now instead of agreeing on our plan, we are starting to have little arguments. Disagreeing about how to proceed. Him, wanting only for me to be okay again, and me, desperately wanting only to give him what I think he deserves from me. From his wife. From the woman who is SUPPOSED to be able to give him this. The one thing that had been keeping me going through all of this was that I expected to wake up on Tuesday free of pain. Our instructions to her were that we wanted any source of pain eliminated. I had been counting on that. Now, as I sit here crying all over my laptop keys, not only am I more confused and torn than ever...I am in so much pain I can't think straight.

Please do not feel that you have to comment on this post. I know that many people have never experienced anything like any of this and don't know what to say to someone who has or how to say it and are scared they may say the wrong thing. Some of you (I know because you've told me) are feeling guilty right now and it makes it hard for you to talk to me or come around while you are pregnant yourself, trying to get pregnant, recently had a baby, have a toddler, whatever the case may be. You are not expected to know what to say. There are no right words. Nothing makes it better. Nothing makes it okay. I promise few things can make it worse. Please know that I don't expect you to have words to make it better. There are some who DO understand please don't think I don't know that. I have considered making a blog post with the Top Ten things NOT to say to a woman struggling with infertility. It would provide a comic relief across both sides of the aisle while serving as a tool to help both sides communicate as well. I promise you, this reality we are living in has been a lonely existence despite the love and support we have. I can't explain it. That's just how it is.

For now, I will close with what I am begging you NOT to write here. Please don't tell me that if it is God's will, it will happen. While I recognize that is true...please understand that it makes me (us) question why WE aren't worthy in God's eyes. Please don't say, "If you just pray about it. It will happen." We have. Don't make us think we aren't praying right. Or maybe we need praying lessons so if you think so, maybe that's okay to say. I'll take that into consideration. Please don't say, "You can adopt." No one knows this better than us. But it is my RIGHT to feel as though I should be able to give my husband a child who has his eyes, his kindness, his talent for playing soccer, my IQ (ha, had to throw that in there), and our BLOOD. I'm not saying we won't consider it eventually. But right now, I need to be okay with wanting that. And when I can't have it....I need it to be okay with everyone for me to MOURN that loss....because that's what it is.

I said I was going to close with the above. But instead I will close with this. I know we have asked a lot of all of you lately. I'm going to ask again. Please pray for us. Please pray for us to have clarity. Pray for us to be strong enough to make it through this difficult situation together like we always have. Pray it doesn't divide us. Pray the pain (emotional and physical) gets less and that we find peace. I thank you. A million times, I thank you. Thank you for letting me get this out. Now, if you'll excuse me. I need to go blow my nose.

Dazed and Confused AKA RD

P.S. A lot of things are probably spelled wrong in this post. I also didn't proof read it. Please forgive me. :-) Thanks.