Tuesday, October 2, 2012

So You Have a Molar Pregnancy...

It has been just about five weeks since my life got flipped, turned upside down. I wrote about what I went through and what I was feeling just days after my surgery, after being diagnosed with a molar pregnancy. But I didn't really go into much detail, because I didn't really have much detail to go into. Once I had some time to recover from the shock and the surgery, I finally let myself do a little research. I still don't really feel any better about what happened to me, but at least I know a little more about it (kind of.) Molar pregnancies are rare, and as such, there's not a whole lot of information out there. I haven't asked, but I've been wondering how many my doctor has actually treated before. Anyway, I'm writing this now in the event that someone else in my shoes is looking for some information, or some support. If you are that person, hi. I'm sorry you're going through this, and you're not alone. If you're someone who knows someone going through this, you are a nice person for wanting to help. Good job! If you're just checking up on me to see how I'm doing, thanks. You rule.

So, what is a molar pregnancy? or, What happened to you, Kate?
Well, I'm not a doctor, so this is not going to be a bunch of doctor-y garbage. I'm gonna lay it right out for you like they do in 6th grade sex ed. Or 4th grade, or whatever age they teach kids to have sex these days. You did not have a miscarriage, you will not have a baby, you do not have cancer. Do not pass go, do not collect $200, go directly to surgery.

Aside from nature's big "fuck you," a molar pregnancy is basically a misfire. Terrible luck of the draw. It's nothing you or your husband/partner/baby daddy did, it's nothing that's wrong with your genetic makeup. It just happens. I know, sucks, right? Every woman makes a dud egg once in a while. They can't all be awesome. In the unlucky event that your dud egg happens to get fertilized, you get a molar pregnancy. That means that at that magic moment when the egg and sperm meet, a baby does not happen. A "growth" happens. Sometimes a baby happens too, which is referred to as a "partial molar pregnancy," and that baby will have zero chance of survival. [Side note: if you're trying to think if the right thing to say to your grieving friend, please do not say "Well, there was never a baby anyway." or "Everything happens for a reason." Just trust me on this one.][Side-side note: if you have said this to me in any form, please do not feel bad about it. It's hard to know what to say in these situations. Shit, I don't even know what to say to myself sometimes.]

So now that you (kinda) know what a molar pregnancy is, I should mention that every single one of them is different. That and the fact that they're rare adds up to equal not a lot of protocol for treatment. It's not the kind of thing where your doctor can just give you medicine and cure you. It's a lot of waiting, a lot of uncertainly, and not a lot of answers. But, there are a few things that I would guess are common to every molar pregnancy, based on my experience.

You will be sad
Duh. But it needs to be said anyway. On top of coming to terms with this medical shitstorm, you are also dealing with a loss. Sure, as some may point out as I did above, maybe it wasn't a "real baby." But it was for you. You peed on a stick, you saw the line. You picked out paint colors in your mind and maybe some names. That was one of the worst things for me in the beginning. I felt so betrayed and violated by this stupid mole. Oh yeah, that's what it's called. A mole. That makes it somehow even more gross. 

You will be scared
Dr. Google is not your friend in this case. You'll read things in your quest for molar pregnancy knowledge that aren't very good. They start with a C and rhyme with "dancer." And if you haven't yet, you will now that I've mentioned it. It's ok, it's normal. Here, I'll even help you out. Let's get it out of the way: http://www.mayoclinic.com/health/molar-pregnancy/DS01155/DSECTION=complications
There. Now that you read a little bit, you know that although the risk is there, it's rare. There's no point in worrying about something that hasn't happened and might not, right? Right? Right.

You will learn to be patient
Like I said, answers are slim here. You're not getting any straight answers any time soon. The deal with a molar pregnancy is that, even after you get the D&C surgery, your body will still have the pregnancy hormone - hCG - in it. Your goal is to get to zero (or under 3.) Sadly, it takes a while for that to happen. This is where the "everyone is different" comes in. I'm going to be blunt and honest about this one. Some people's go down fairly quickly, some people take a long time.Some people's hCG levels do not go down on their own, or go down and then start to go up again, and then another 'C' word comes in. Chemo. It doesn't mean you have cancer. It just means you have to take a drug with kind of a shitty track record to get the hCG out of your body.

You will get very familiar with needles
Unfortunately, very true and there's no getting around it. It's how they measure said hCG levels. Luckily for me, I have no problems with needles, but every week when I go for my blood draw (yep. every week) I think of the people going through this who do and my heart goes out to them. Lately I have come to appreciate the fine art of blood collection. There's one chick at my doctor's office who, when she draws blood, I swear I cannot even feel the needle going in or out. Or maybe my veins are just getting tougher at this point. Either way, you know you're in too deep when you're high-fiving the phlebotomist on a job well done. It's the little things...

Everyone you know will somehow be pregnant
Everyone. You get on an elevator, BAM! It's filled with pregnant women. Walk into the cafeteria at work? A bunch of pregnants. Log onto facebook? Your whole wall is filled with people announcing their pregnancies. Every day. Everywhere. All up in your face, creating life and shit, while you're standing there wondering what you could have possibly done to deserve this. Well stop feeling sorry for yourself, jerk! Your time will come. Sorry I called you a jerk.

You have to take things one day at a time
This could probably be a subheading under being patient. Anyway, as I mentioned, you have to go every week to get your blood tested to measure your hCG levels. My personal experience has been good so far. I don't know where I started, probably in the 20,000s somewhere, but by my first weekly blood draw I was at 222, then the next week at 56, and last week I was at 13. But (there's always a but) I know that could change so I'm not doing any victory laps just yet.

You will take a long time to heal
Weekly blood draws = weekly ripping the scab off your emotional scar. Oh, you spent all week in an ok mood, not really thinking about what you're dealing with? Guess what? It's Thursday! Time to visit the doctor once again and sit in the exam room getting blood drawn while you listen to other people's fetal monitors in the other rooms.

You will put your plans on hold
If you're like me, your molar pregnancy started out as a dream to add to your family. Not so fast, now you have to wait. I was first told I'd have to wait six months to try again. After doing the math and painfully coming to terms with that news, I was cruelly informed that I would have to wait a year. "Sorry. I must have misspoken." Thanks, doc. After reading on my own, I learned that it's a year from when your hCG hits zero. So I'm not even at that one year starting line yet. Awesome.

But wait! It's not all bad! (Okay, it's mostly bad) There are not many ups on this journey, a lot of downs, but here's one thing I do know...

You will be ok
You will, no matter what road you take to get there. So will I. This will be a memory one day. Hopefully one that you don't reflect on too often. In the meantime, there is actually some support out there. This site is a good resource, and it led me to a group on Facebook full of the most supportive women I have ever come across, all in different stages of this journey.

16 comments:

  1. Kate, God, I'm sorry. I truly have never heard of this before, and I can't even fathom what you're feeling right now. I PPH you.

    ReplyDelete
  2. Fierce internet ((hug)) You are amazing and I think the post is going to help a lot of people.

    ReplyDelete
  3. Great post! Just came across this blog somehow. I have been through 3 complete molars and know just how you feel. I have 5 kids too. Somehow just ended up with lots of dud eggs. :) I am sorry you had to go through this. :(

    ReplyDelete
  4. I don't even know what to say other than I'm sorry. You really are just so, so awesome and it hurts me to know that you are going through this.

    ReplyDelete
  5. Kate you're so brave for sharing, and very awesome for providing straight-forward and heartfelt information that will undoubtedly help someone who needs it. Stay strong. Good thoughts your way!

    ReplyDelete
  6. Kate: Stay strong! A year ago today I got my call (two months after a D&C) telling me my number were going back up, not down and that I had to see an Oncologist! I remember the fear, the googling and the dread of what was to come. After three once a week rounds of chemo and one week of daily injections, surviving the side effects and the incredible support of all my family and friends, I can say, that although the light at the end of the tunnel might not be there yet...it will be soon. Now a year later, I am 14 weeks pregnant with my second child and even so, this pregnancy and any in the future (god willing) will never be the same. I wish I could enjoy the ride, but once you've been through this, it changes you. My Oncologist and OB have told me I am their Patron Saint of pregnancies and Molars because like you, I retained my humor and felt that with a smile and yes, some sarcasm and wit, I could get myself and my family through it. You will too!

    ReplyDelete
  7. I'm so sorry you are going through all of this Kate. I had a faint idea of what a molar pregnancy was, but you have educated me more than internet research ever could. Everything I have is crossed that your numbers will continue to fall. <3

    ReplyDelete
  8. Wow Kate so sorry to hear you are going through all of this. Heart goes out too you. <3

    ReplyDelete
  9. I had a pmp back in '06 and still remember how awful it was. The waiting, the uncertainty, the loss, having to try to explain the whole thing. My thoughts and prayers with everyone that has gone through this. I think this post is going to be so helpful to other women that unfortunately have the same thing. Thank you so much for sharing this Kate, you are in my prayers.

    ReplyDelete
  10. Dude, I had no idea, how awful. I want to hug you so bad right now.

    ReplyDelete
  11. Thank you for sharing your story and for mentioning the MyMolarPregnancy.com site, I'm glad you found the help and support you needed.

    ReplyDelete
  12. Molar pregnancy diagnosis a week ago :(

    ReplyDelete
  13. Kate,
    My apologies for your loss. This is the first blog I have read on the subject since being diagnosed in February of a complete molar pregnancy. And I too go every Thursday to get my blood drawn at the cancer center. I must say that I completely relate to everything you wrote. This was going to be my first child and it's devastating to me that I was unable to celebrate Mother's Day for yet another year. This has been a complete roller coaster for me and I never expected this. I'm a healthy normal 23 year old and somehow I get this very rare condition. It has deffinately been hard, I had to get rid of all the baby things I had, and closed the would be nursery off. It's been a few months but it's still hard as you said seeing baby's and pregnant women everywhere. Nobody, friends or family have ever heard of this so they find it hard to relate. It's comforting knowing that I'm not alone. Thank you for sharing!

    ReplyDelete
  14. Kate,
    My apologies for your loss. This is the first blog I have read on the subject since being diagnosed in February of a complete molar pregnancy. And I too go every Thursday to get my blood drawn at the cancer center. I must say that I completely relate to everything you wrote. This was going to be my first child and it's devastating to me that I was unable to celebrate Mother's Day for yet another year. This has been a complete roller coaster for me and I never expected this. I'm a healthy normal 23 year old and somehow I get this very rare condition. It has deffinately been hard, I had to get rid of all the baby things I had, and closed the would be nursery off. It's been a few months but it's still hard as you said seeing baby's and pregnant women everywhere. Nobody, friends or family have ever heard of this so they find it hard to relate. It's comforting knowing that I'm not alone. Thank you for sharing!

    ReplyDelete
    Replies
    1. I'm so sorry you're joining this awful club, Kristi. Mother's Day must have been hard :( You are so far from alone, even though it is rare. Do you have a Facebook account? Search for "After My Molar Pregnancy" - great group of ladies!

      Delete

let's get awkward!