Saturday, March 12, 2011

Another Health-Related Update

Well, kids, here it is. Another bit of health drama to add to my pile. 

First, I should say that I'm not exactly comfortable fessing up to this bit of news because it's really, really hard for me to think about. However, writing things out is very therapeutic for me and I've had a lot of people say that they appreciate how open I have been about all this crap thrown my way so I decided to do it anyway. Maybe this will help me sort through my current trauma-induced emotions. Maybe not. I can't figure anything out anymore. 

Secondly, another reason I decided to write this is because if anyone reads this who is or will go through something as horrific as this, I hope they can realize that there is always strength to be found somewhere. Whenever you think you've given enough, been through too much, been pulled to many directions, there's always more you can give, experience and be thankful for. There are always lessons to learn and ways for us to grow and evolve as people. If I can make it through THIS, anyone can make it through anything - and I hope people read this when they are going through hard times and realize that, eventually, everything will be okay and there is always some additional strength somewhere to help us get through pretty much anything. Basically: the fight is never over. The healing has already begun. 

Campy, but right now thinking about that is the only thing pulling me through. 

So here's what happened: 

Yesterday I got a call from a genetic counselor. They got my blood results back from the genetics lab and it turns out the baby is considered "high risk" for a fatal chromosomal disorder. It's not treatable. If the baby does have it, chances of it surviving the pregnancy are next to nothing. If it does survive the pregnancy, chances are 90% it will die within two days of birth. No child with this disorder has ever lived past a year. 

Basically this chromosomal issue makes it so the baby isn't growing properly (if it has this). Babies with this disorder usually have huge heads and stunted bodies, limbs don't properly form, ears don't form, they have sight issues, holes in their hearts, liver and kidney problems and everything else. 

The disorder is horrible, and it's caused by some weird thing that happens spontaneously during fertilization. It's not controllable, and chances are, if the baby does have this and I decide to have more biological children in the future, I will never face this issue again. 

That's meant to be comforting, but it's not. Let me explain why. 

I'm not 6 weeks along here. If I was, I could deal with this a lot easier. No. I'm almost 20 weeks -  the halfway point of pregnancy. I've had a chance to pick out names, to get gifts, to buy and set up a crib, to anxiously wait the five more weeks it takes to reach viability (the point where the baby will probably survive outside of the womb). I have felt kicks and flutters... I've gotten attached to the little bugger. 

Then this happens. 

It never ends for me. 

The chance of the baby having this right now is 1%, but that's still way too high for me, and it's considered "high risk" for a disorder this severe. On Thursday I go in for a very high definition, intense ultrasound. They will be looking for any obvious deformations on the baby. If the baby (or maybe I'll do this anyway, I'll see how I feel on Thursday) has any deformations (which should be obvious by now), then I'll be getting an amniocentesis. An amniocentesis is when they stick a huge, horrible looking needle into your uterus to extract about 5 teaspoons of fluid as well as some skin cells from the baby to analyze. It will take me about 10 days to get the results and see if the baby really does have this disorder. 

Hopefully we'll see a healthy, happy baby in there and the only new bit of news I have to share on Thursday is whether it's a boy or a girl. If, however, this baby does have this disease, then we will seriously think about termination. (I know everyone has their own views/beliefs regarding that, and until YOU are carrying a baby for 20 weeks and learn that it might have a fatal disorder that is impossible to survive with, please don't judge me for what I may choose. You don't have that right). 

So there it is. My husband says he has a "hardcore gut feeling" that everything will be okay. I hope he's right. I don't think I've ever wished for psychic powers as much as I am right now. I know the risk is just 1%, and to many that is comforting, but like I told the genetic counselor yesterday: "I had a 4% risk of having cancer and I got it, so the 1% risk really isn't that comforting to me right now." I was so upset by this news I spent most of last night throwing up. I didn't sleep very well, either. I just feel like I'm missing every mark recently. I had a 4% chance of cancer and I got it. I had a small chance of my joint disorder flaring up during pregnancy and that happened. Now this. I just feel like, if there is a small odd for anything, I'll end up making that odd somehow. I mean, even testing high risk for this disorder is a small odd that I somehow miraculously made. Out of all the diseases and disorders they test for, I had to get a chance at the only fatal one on the list. Go me. 

Anyway, as you can imagine, this will probably be affecting my blogging (again). I will try to review this week, and I'll probably get out one review (and the contest stuff) but I'm not sure if I'll be able to do much more than that. It's a horrible waiting game until Thursday and my mood/mental stability is wildly fluctuating right now and I assume it will until I get that damn ultrasound and see what is happening in my womb. I hope everything is okay, but you never know. If I've learned anything since I was diagnosed with cancer, it's that life is unpredictable and that somehow, some way, I'll find the strength to get through this... just like I've found the strength to get through every other thing that's been thrown in my path in recent months. 

I have to take it one day at a time. Anything more than that, and I'll break. 

Its hard for me to be this open about this situation, but I also think it's good for me. I also want people to realize that, no matter how hard life gets, no matter how run down, run over and put out you feel, it could always be worse. We should be thankful for what we do have and stop dreaming about what should be. No matter what happens, at least I got to enjoy a few months of pregnancy and dreaming about being a parent. A lot of people don't even get that much. It could always be worse. No matter what wall we are up against, no matter how hard life gets, we are all stronger than we appear, or feel. When you get to the end of your rope, you'll be amazed at how much rope is left for you to hang onto. 

Humans are incredible, strong creatures. I don't think we give ourselves enough credit for that. Right now, that's what's pulling me through. That, and the fact that despite everything I've been through, I'm still here, still fighting, still healing and still looking toward the future. I'm incredibly proud of myself for that and it's amazing all I've learned about myself during these past few months. I had no idea I was this strong until I had all of this thrown at me. Every time I think I'm done, that I can't take anymore, something else happens. And every time I fall down, cry a bit, panic, and then pick myself up and move on. Because, despite it all: 

With all its sham, drudgery, and broken dreams, 
it is still a beautiful world.  
(excerpt from "The Desiderata" by Max Ehrmann)


And I refuse to forget that. 

... now I'm going to go read a book and forget reality exists for a while. 

14 comments:

  1. Don't beat yourself up for taking a break from blogging. You have to take care of yourself first and foremost. I am so, so sorry to hear what you're struggling with, and your family is in my thoughts.

    Good luck.

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  2. I'm not going to tell you to believe in miracles - I don't think you want to hear that right now. All I will say is that you've got an awesome husband and I think he's hit the nail on the head. :) Don't give up, Sarah, ever - but don't forget to live. *MASSIVE HUG*

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  3. Wow Sarah. You have really been through some tough times in the last year. I don't think many people would judge you for any decisions you may have to make (but hopefully won't be faced with). I will say this: I know my situation is super, super different from yours, but everyday for the last four months I have basically done the Stuart Smalley, "I'm good enough, I'm smart enough" type positive affirmations on a daily basis. I had my own phrases of course, but in the end it really is getting me through all of this. I see in your post that you are doing that as well which I think is a great thing. Positive thinking does wonders I'm finding out. It's so cheesy--the whole, "When life gives you lemons, make lemonade thing," but it definitely helps when you have no other choice but to meditate on that (in order to not completely just fall to pieces).

    I am with your husband. I think everything with the baby is going to be ok because I'm choosing to believe that. I know the odds have stacked against you in the last few months, but it's time that you beat the odds and this is going to be that time. You are an incredibly strong woman, and no matter what the future holds, you will make it through this and life will take you exactly where you are meant to be (my aunt told me this and it is something I think about on a daily basis now).

    I am so glad that you are able to talk about these things on your blog. It's good to have a place to vent. I hope the next few weeks will be full of hope, deep breaths, super positive thoughts/vibes, and even maybe some tears (both of stress and happiness). I will send every good thought your way for your ultrasound and amnio (I actually spoke to someone just the other day that said an amnio wasn't that traumatic--it didn't hurt she said), and will definitely be thinking of you and hoping for a good result!

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  4. I'm not dumbfounded but without words. I can't imagine what you are going through. Every word sounds so pointless. Your hubby is a gem and you are much stronger than you think. Every post from you breathe your strength.
    And I trust in your strength whatever will happen ...

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  5. Sarah -

    I know I keep popping up on here seemingly randomly - tax season really does mess with my regular reading schedule.

    I just wanted you to know that I have been thinking about you often, and after reading this incredible post...I too have a seriously strong gut feeling that everything will turn out fine. Sure, it's not scientific, but I believe it.

    Please take care of yourself as well as you can, lean on your husband and family as you have been doing. Know that there are lots of people who may not know you all that well, but care about you nonetheless.

    Sending you good vibes and big virtual hugs,
    Reese

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  6. I'm so sorry Sarah. Pregnancy hard enough without hearing that. I'm with your husband on this one, he knows what he's talking about. Keep up the good attitude.

    Wishing you all the best, my prayers will be with you.

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  7. Chin up. The more you endure the brighter you shine.

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  8. My thoughts are with you and your husband, Sarah. I share his gut feeling, I know that whatever this appointment brings, you'll make it through.

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  9. I'm absolutely keeping you and yours in my thoughts, and sending good vibes your way. I'm rooting for you in this, I really am, and though I haven't been through what you have, I can imagine it all too easily. Whatever happens, I'm here, and so is everyone else touched by you in some way.

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  10. I hope the ultrasound shows conclusively that your baby is healthy and strong. I'm sending all possible good vibes your way.

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  11. Keeping everything crossed for you and your husband that Thursday's scan shows a happy, healthy baby waving at you. The strength you're showing through all of this is monumental and mind-boggling. Huge hugs for all three of you!!

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  12. Sarah- I am praying for you and sincerely wishing you the absolute best. Health issues are the worst kind of difficulties in life, and I hope you and your baby will be healthy.

    Try to stay positive- although I'm sure that's very hard right now.

    I'm keeping you in my thoughts and prayers.

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  13. I can't even begin to conceive how terribly hard this is on you especially on top of all the other health problems you've been strugging with. Know that you are not alone in this - and have an extended community of people who are with you and hoping for the best possible outcome.

    As for a tough decision you might have to make - well that is yours alone - and hopefully it won't come to that but if it does know that we understand and feel for you and respect your choices and ther reasons for them.

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  14. I am so sorry you keep getting this kind of news. I don't have much to say, as I can't tell what I would think of this being told to me and the feelings I would feel.

    Just wanted to let you know you are in my thoughts and I'm hoping all is well with the little one. Take care.

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