Wednesday, August 29, 2012

Basements, Dark Woods, and...the Bathroom

Some places are inherently scary. Horror-movie scary. Basements, for example. Classic place of terror. I want a first floor laundry room because the basement, no matter how clean or well-lit, is a place where the killer always hides. The woods in the dark--another scary place. My husband is always making fun of me because normal animal sounds that come from the ravine behind our house (definitely not deep woods by any stretch, but woods with wildlife nonetheless) scare the pants off me, often. Foxes that sound like a maniac screaming or a small child being killed. Owls or some other night creature that make creepy tittering sounds that follow you or seem to get closer and closer. Deer that crash through the woods and make it sound like a killer is coming to get you. (I may have an obsession with a vague "killer" who lurks in all kinds of environments and sadly has me afraid of tent camping.)

The bathroom has just made the cut of places that freak me out.

Well, to be fair, bathrooms have always creeped me out for other reasons. Prepare yourself to be introduced to some of my more embarrassing, bizarre fears. I have that fear that when I'm washing my face with my eyes closed (always a good idea), I will open my eyes to see something scary in the medicine cabinet mirror. Or someone will be behind me and smash my face into the sink. It never happens, and I don't know what combination of movies or urban legend has put this fear into my head, but I am always creeped out when washing my face in the bathroom. I'm not afraid of the shower, but when in the bathtub with bubbles there's always a completely illogical fear that something will come up the drain. Or, if you submerge your head (which I NEVER EVER do) a killer will get you. Thank you, creepy tub movie scenes (Fatal Attraction, Black Swan...). The toilet has been a source of terror since early childhood--I'm not sure if I was potty trained too early or what, but when I was a child (and possibly into adulthood) I used to be terrified to use the bathroom at night--I had to be back in bed before the toilet stopped "singing" (oh, old homes and their eccentric plumbing), so that if some evil spirit came flying out of the toilet it wouldn't know who had used it last. Later into adulthood the fear wasn't the mythical Toilet Beast, it was that the flushing toilet could alert the killers that someone was awake in the house. I really have to figure out what this killer business is all about!

But now, the bathroom is terrifying for entirely different reasons.

When going through infertility, the bathroom is a place of potential tragedy or potential for good. It can signal the start of your period (bad if you were hoping you were pregnant, good if you need it to start to get into a cycle). It can signal bleeding that is a bad, bad sign. It can also signal bleeding that means something good--implantation spotting. It's where you go to pee on a stick (I hope). That stick can be your best friend or your worst enemy. And it all happens while you're sitting on the toilet.

Now however, having experienced a miscarriage, the bathroom is definitely a place of terror. And of sadness. I have had two losses, but they were totally different. With the ectopic, I started spotting the day before the ectopic was confirmed visually on a fancypants ultrasound. Things were already not looking so hot, so it wasn't exactly a surprise. Upsetting, but not shocking. With this last pregnancy, everything was looking so good. Although, I wasn't feeling good the day I apparently lost the vital part of the pregnancy. I was a little crampier than normal, and downplaying it because when you are pregnant, sharp cramps are a very bad sign. And if I ignored that very bad sign, maybe it wasn't really happening. But then I definitely felt like something was up to no good in my nethers, so when I got to my Grandma's apartment I had to go to the bathroom and check things out. And it was bad. After the teary call to the nurses, I checked again on my way out. It was worse. It was like a horrible nightmare. This was no spotting, this was a horror show. It was terrifying. But at least it wasn't MY bathroom. After crashing the fertility clinic and seeing things on the ultrasound screen, everything slowed down to a stop within hours. My own bathroom didn't betray me in the same way. Soon it was normal. But then it was apparent through my bloodwork that everything was not normal and I would probably start bleeding soon. But I didn't start bleeding again until 10 days after the initial bleed. So every single day I would go to the bathroom and there would be nothing. I would steel myself for the horror show, and nothing would be there. I went through a lot of feminine products unnecessarily. My heart would be in my throat as I went into this room that everyone uses multiple times per day. And I was still using it a fair amount more than usual, because it also took some time for my numbers to totally drop. For a horrible week or so I still felt totally pregnant even though I knew the important part, the sac, was gone. By the time I finally bled for real it was actually a relief. This horrible suspense was over. It could conclude and resolve and at least leave me, if devastated, absolutely sure of where I stood. Because while I wasn't bleeding yet a very, very small part of me was hanging on to the hope that maybe it was all a big mistake.

So now I am left with a problem. This miscarriage has given me something new to be afraid of. I never really thought that this would happen to us--I know so many women who had a hell of a time getting pregnant with IVF, had negative after negative, and when it finally stuck--it stuck for good. They didn't experience a pregnancy loss. So why should I? I had a loss before, but an ectopic isn't the same as a miscarriage. I didn't reject the embryo. The embryo just chose its home location unwisely. For all we know, that embryo may have been completely and totally normal. But this one, this one could not stay for other reasons. Who knows what those are, but most likely it was flawed in some way and missing the code it needed to continue developing. And so it left. Seemingly reluctantly, but it went. And now I know that I can get pregnant in my uterus, but I also know that I can miscarry. This was Bryce's biggest fear. I was deathly afraid of ectopic pregnancy, so rare and improbable especially with IVF. Bryce was afraid of miscarriage, fairly common but really, why would we have that experience? We got both. Two Augusts in a row, filled with loss and fears realized. Miscarriage is pretty common, though. Most people know someone who's had at least one. Just because I had one doesn't mean I'm more likely to have another.

That's the logical take on things. I, however, am now concerned that I am going to need a xanax before going into the bathroom during our next round. I don't quite know how that's going to go, now that I know what it feels like to miscarry. I feel like if we can ever get to 7 weeks it will be party-worthy...I want a cupcake to commemorate each week after 6 that we make it to without incident. I want to believe that this is possible, that we can move on to our next steps in our dream to experience pregnancy together and welcome a child into our lives through a birth. My birth. I want to believe that this was a fluke, that I don't have to be terrified of the bathroom.  I want to feel safe in my body and believe that it will actually sustain life instead of systematically rejecting it. Someday this will be possible, I truly believe that. Someday I will go back to being scared only of the killer in the mirror and the killer-alerting midnight flush.

Monday, August 13, 2012

Okay

Social norms are a funny thing. There are certain interactions that are supposed to be pretty rote, and it really screws people up when you don't give the expected response. Case in point: last week during a (probably ill-advised) foray into public to get some food at Wegmans for dinner, I ran into a teacher from my district. We exchanged hellos and how are yous and then he asked me, "Are you having a good summer?" Easy question. And the socially acceptable answer is YES, HOW'S YOURS and then change the subject if inside you are screaming NO NO NO. But I couldn't do it. My answer was an emphatic, "No, not really." And then I realized I had no followup and he looked uncomfortable and so I followed up my gaffe with, "How's YOUR summer?" since explaining that this is the Summer Of Miscarriage for me probably wasn't the way to move the conversation into a better, less horribly awkward direction. And that poor teacher couldn't move on to grocery shopping, far, far away from me, fast enough. But this exchange got me thinking. How many times to we answer questions with the acceptable response rather than how we're really feeling? The answer: ALL THE TIME.

For instance, "How are you?" is a fairly innocuous question. You're supposed to say "I'm good, I'm fine, I'm okay" with "I'm okay" being the most negative of answers. Think about the last time you had something sad or disappointing happen and someone said, "Hi, how are you?" You can't stop yourself! You say "Fine/Good/Okay" even if you're SO not. It's the polite thing to do. Except lately I'm having a problem with this. Because I can't answer in the positive. And I feel like there's an expectation for me to do so, because if you answer "Not great, actually" too many days in a row people get concerned. But why is it so uncomfortable to hear someone answer "How are you" honestly? At what point, really, am I supposed to be okay? Okay is relative. Is the definition of okay that I got up and showered today? Or that I made it through a day without gut-wrenching sobbing at one point or another? Is it that I'm no longer sitting on the couch, unable to concentrate on books or magazines and just sitting in my disbelief that this pregnancy didn't stay? All last week I could not say "okay." I played around with honest answers, because I believe in being honest even if it makes people feel a little uncomfortable. You asked (and, by the way, THANK YOU for asking), and I assume you really want to know. I am not going to paste a frozen smile on my face and pretend everything is okay because somehow I'm supposed to be well on my way to healing from this loss, and my obvious pain is a little hard to observe. So I've said, "Not good," I've said "oh, I'm just awesome," (don't recommend this one so much, as even though I adore sarcasm it tends to be alienating, since asking "How are you?" is as rote as the glib answers we typically give) and lately I have been using "I'm as good as I can be right now." That's my favorite, because I am a little better each day, but it sets the expectation that I am going through something that will stay with me for some time. The physical effects of this miscarriage alone are nowhere near completion, and the loss of what we thought was our hard-won forever baby is incredibly hard to take. So no, I'm not okay.

And, while we're at it, it's not okay. That's another horrible rote response that I'm working hard to train myself away from. Whenever faced with a loss or personal tragedy of whatever proportion, people say "I'm so sorry." Which is a lovely response. This experience is hideous, and frankly it is something to feel badly about and empathetic about and when people express this to me it is so appreciated. I'm sorry too. But the rote response to "I'm sorry" is "It's okay." And it's not. It's decidedly, 100% NOT okay! But it's so hard not to say that. Bryce's response to this one is "It's not your fault/You didn't do anything," which is a little on the humorous side but also not my favorite. Because when I say "I'm sorry" to someone, I'm not assuming blame for their troubles, I'm expressing that I feel a sadness for their pain. It's a different kind of "I'm sorry" than if I were to accidentally back my car into your light post, for example. So my response, that I actually have to think about so that I don't slip out a "It's okay," is just "thank you." I want to thank you for expressing that you feel for my loss. It's not okay, I don't think somehow you caused this, but I appreciate so much you telling me that you're sorry this happened. Because that's what "I'm sorry" in this context really means--not "My bad," but "I'm sorry this is happening to you."

I don't know why loss makes people so uncomfortable. Maybe it's a reminder that these horrible things could also happen to you. Maybe you honestly just want the person to be better, and when they're not and you can't control that or make it better it puts you at a loss for what to say or do. But I can honestly say that this loss that we are experiencing is the most difficult loss we've had to deal with so far. It's not disappointing, it's downright devastating. It shattered a dream of what the next year was supposed to look like. I keep waiting for the landscape of our lives to shift and change and evolve to this next step we desperately want, and we keep getting little tremors but nothing lasting. And it's hard. I may not be crying all the time anymore, I may not be staying in bed or on the couch, unable to face a world where I'm not pregnant anymore, but I'm pretty firmly entrenched in my grief and my loss. I'm sad and angry. I am crossing into more hopeful territory as we discuss our next steps and what we'll be doing after we take our break. I am finally feeling like a semi-functional human being. But I am still not "good." I am, however, better. I am on my way to okay. And that's...just fine. Thank you for asking.

Thursday, August 9, 2012

Shiny Happy Pages

I apparently like my mailbox to torture me.

As some of you may know from previous posts, I had the brilliant idea of setting myself up to receive Ameri.can Baby magazine. This magazine is a little free publication put out by Parents magazine, specific to pregnancy and infants. Did I mention it's free? I first saw it in the public library and when I realized that, again, it's free, I thought "What a great way to get resources for my Baby Binder!" Because I have a Baby Binder. I've had the damn thing for years now, filled with ideas on nursery decorating, products you do and do not need, what to register for, ideas for belly photos, and detailed information on stages of pregnancy, birth, breastfeeding, and infant development up through age 2ish. It's grown over the past few years and it can be a really fun thing to look at, when I am headed into a cycle and in a positive upswing. Needless to say in this time of loss and staring into space to see if I can count dust motes floating by because I can't stand to concentrate on anything else, it is firmly shoved under the coffee table and will likely stay there for a really long time.

Here's the thing. I stopped receiving Ameri.can Baby months ago. I think I know why--the due date I gave was the due date if a for-kicks IUI would have worked out, oh, early 2011. So when the marketing folks decided to add "A Special Section Just for You!" it became apparent that my faux baby was heading towards toddlerhood. Short of fessing up that my baby didn't really exist, and giving in to my urges to sign up for real (but my babies keep leaving in ways both anticlimactic and horrific), I decided to let it go. Why torture myself. Why keep confusing the mail carrier when I am obviously not pregnant and there are no children in our house? My baby binder could wait until there was a real, live, honest to goodness baby on the way.

Or so I thought.

Because, during my two week wait for this last, sad little cycle, I got a prize in the mail. I got a free issue of Parents magazine. With the option to purchase a WHOLE YEAR for only $1, plus get a crazy birthday bonanza book that I decidedly DO NOT NEED, but these things don't spoil on the shelf, so why the hell not? Why not start planning my mythical child's first birthday party before he/she is even a gamete in a dish? (Because it's freaking crazy, that's why.)

The problem was the timing of the magazine's arrival. It was at a time of hope and optimism. I took it as a beautiful omen that everything would be just fine. My baby was winking at me through the cosmos. So I read through it, and found a lovely recipe for roasted broccoli that we are positively addicted to now, and put it on the shelf for future Baby Binder-ing. And then, when my test came up gorgeously positive, I ordered it. A WHOLE FREAKING YEAR OF TORTURE FOR ME. I should have waited. For some reason I have three free issues, presumably thanks to my graduation from Americ.an Baby. But for $1? A whole year of resources for our new extended family? Our little sesame seed needed this magazine. It was time. What could go wrong?

Well, obviously that was a big fat mistake. One of a zillion rules I have to keep learning over and over: DO NOT ORDER MAGAZINES THAT WILL MAKE YOU SAD IF THINGS DON'T WORK OUT UNTIL YOU AT LEAST HAVE A G-D HEARTBEAT. Not that that guarantees anything, but at least it puts you closer. Because I can't seem to get out of the developmental stage that's described in foods people with diverticulitis can't eat. I am forever stuck in seed metaphors. I didn't even make it to a lentil this time, much less the mythical berries and stone fruits.

OH, oh, because ALSO, in my exuberance, I not only signed up for Ba.bycenter.com I installed an app on my freaking phone for the service. Which is great when you're looking to see what foods will likely kill your tiny offspring, but not so great when reading about why first trimester miscarriages occur AFTER YOU HAVE ONE. Plus, I had signed up for the emails the last time I was briefly pregnant, and apparently I unsubscribed but my poor ectopic babyling still had a virtual life going on. I was greeted with "JESSICA, your 3-month old is..." It made me sad. I had to delete my "Family Member." Which made me sad again. But then I got to ADD one, one that presumably would finally stay! Oh, the excitement. Except that only meant I had to delete not one but two babies-that-should-have-been-but-weren't from my account within weeks of each other. And I can't figure out how to uninstall the stupid app from my phone. So again, another rule. DO NOT SIGN UP FOR ONLINE BABY TRACKING SERVICES UNTIL YOU ARE IN THE CLEAR. I have up to 6 weeks pretty much memorized anyway. It's the legendary and seemingly unattainable 7 weeks that I can't wait to read about. But I think next time I will just go back and find out what's going on in there after I am a little bit more in the clear. Because all of this exuberance in the early days of pregnancy just seems to be followed rapidly by horrendous, crushing loss and sadness.

I can't help but get excited though. I am a sucker, I fall for this every time. And why shouldn't I? Why shouldn't I enjoy every hour of pregnancy, while I have it? Why shouldn't I embrace the joy of the moment, since as of yet all I have are moments? I am incredibly excited for motherhood. Why shouldn't I plan ahead and know as much as I can about different aspects of pregnancy, birth, and parenting infants? For Pete's sake, I read an entire pregnancy book cover to cover within two days of my positive. Which was not exactly the wisest idea (it was terrifying on many levels, from the toxic wasteland that is EVERYWHERE YOU GO to minute details on giving birth), but it was fun. If I throw even a fraction of the energy into learning about pregnancy and birth options and nursing and all those associated experiences that I have thrown into this infertility bullshit, I will be one well-freaking-informed mama. Understanding of course that you can read all you want but it's another thing entirely when you're in the thick of it. Which, really, isn't all that different with this infertility nonsense. You can read all about IVF and what it's like to fail IVF and what it's like to fail multiple IVFs and have an ectopic pregnancy and a miscarriage, but until you're in it it doesn't quite give you all that you needed to be prepared for it. Same with parenthood I imagine. Except with parenthood there's something positive bolstering you through the tough parts. With infertility there's nothing but the bad stuff. You learn good stuff about yourself and your relationship with your partner and your relationship with those around you, but there's no continuing positive thing that gets you through each day. Just pure determination and the resiliency to believe that hope is still alive somewhere in your battered psyche. That's why it burns my britches when people say things like "Just wait until you have kids! Then you'll know stress and tiredness!" or "You think it's hard now? When you have kids it never stops. You always worry and have worst-case scenarios." Well guess what. The operative part of those "encouraging" gems is YOU HAVE KIDS. You have someone to giggle and gaze lovingly at you, you have smiles and hugs and kisses. You don't have a drawer with a folder of all your embryos who may have been your kids, but are now long gone. You don't have a vision board that shows all the things that you desperately want for your expanded family that has moved from the kitchen to the back office room and is slowly on its way to a closet somewhere because you can't bear to look at it anymore. Because those things ONLY EXIST on the board, in pictures taken of someone else's reality. Not yours. Pictures taken of fake families in magazines like Parents. They may be models, but they are representations that reflect actual people's actual lives (if only a bit shinier and neater around the edges), and for me they reflect a dream that we have that has yet to be realized.

So I'm keeping my stupid Parents subscription, because I paid my dollar for it and I can always shove it in a drawer until I'm ready to Baby Binder again. Because I will be, it's just a matter of time. We will make our tough decisions and move on to our next adventure on this reproductive rollercoaster. And I will be able to stomach looking at those shiny happy people with their smiling toddlers, because I'll be able to once again see Bryce and me reflected in their faces, and our own positive experiences to outweigh all the worry and disaster and hard-won journey to get to that point.

Tuesday, August 7, 2012

Hello/Goodbye

I haven't written in a while. I have been stuck, yet again, in a horrible limbo. I had a short period of time that was beautiful--a time when I thought we were finally on the other side, where things looked so promising and the world of parenthood was laid at our feet. And then yet again we found ourselves in a position of waiting, of trying to find hope where there was very little if any to be found, until we finally found ourselves on the other side of an experience I've hoped in vain to be spared from.

This frosty cycle, this sixth transfer of embryos 14, 15, and 16, was a short-lived success. I was pregnant. Robustly so. I got an honest to goodness congratulations call, the call we've been waiting for. And then I miscarried.

And now I am stuck in a place of sadness. I am so sad I can't even really cry. I just sit and stare into space. I don't understand this. I don't have any satisfying answers for why and how this could have happened to us. We really are colossally unlucky. Unfortunate. How can this be so heartbreakingly difficult to achieve? How can we keep inching closer to the prize but only just an inch at a time?

I have all my numbers memorized. I could tell you all the HCG rises I had with my ectopic pregnancy last summer (12-26-74-142-488-1161). And now I can tell you that my somewhat normal uterine pregnancy went 67-137-333-894-2036-259-129 and is still counting backwards. I saw a sac. Of course I saw a sac after bleeding and falling spectacularly apart in a terror I've never experienced before, but it was there. And the "debris" is still there. Because I started bleeding last Monday afternoon and it stopped by Monday night. I was on bed rest for days until my numbers plummetted. And I am still, STILL not bleeding. I lost that little babyling, but my body will just not cooperate enough to let me lose everything all at once. I have to have a dragged out experience. I have to feel every last bit of pain possible, apparently.

7/21/12. The day I got my unadulterated congratulations call. The first time I've had a strong first number.
7/30/12. The day I had a scary bleed and showed up at my RE's office in tears, begging for an ultrasound. And I saw a sac, which should have been joyous and exciting but instead was frightening and sad--was this Hello/Goodbye?
8/1/12. The day I was told my numbers dropped. A nearly 1800 point drop. A drop so severe and so crazy that we weren't the only ones thinking it could be a mistake. I mean, what if someone left off a zero? What if it was 2590? That would make more sense.
8/2/12. The day I was told it wasn't a mistake. My numbers dropped further, solidifying that the pregnancy was doomed and had probably already been lost. But I couldn't accept that, not when a sac had been visible after the heaviest part of the bleed. Even though the numbers were clearly bad, I would not go off my meds until I saw that my uterus was empty.
8/6/12. Ultrasound confirming somewhat empty uterus and definitive miscarriage. Follow up appointment with our doctor. Large quantities of wine consumed in the evening.

What's really upsetting is that this state of not-bleeding, of incompleteness, could go on for a while. I have to keep going in for HCG blood draws to make sure my numbers are dropping steadily and don't plateau. Because my body relaxed its cervix to let my baby out but didn't finish the job and clean house, my cervix is still acting like a gateway. And my uterus is not shooing out the detritus within. And so I am at risk for infection. Because nothing could be SIMPLE, even tragically simple. My body can't seem to figure out how to get pregnant, stay pregnant, or even expel a failed pregnancy. WTF. So it's really messed up, because I can pee on a stick and it will tell me I'm pregnant. I did it yesterday morning. I'm out of sticks, so I won't keep torturing myself, but I actually called up the company who manufactures my digital stick that taunted me with "PREGNANT" on the screen and asked what the threshold for HCG detection was. 25. So as of yesterday I was still at least at 25. All last week I felt pregnant. I feel a little less pregnant now, probably because I'm mildly hung over, and also because mentally I have accepted that this loss occurred. Last week I didn't accept it. I was, yet again, in a place where I was begging for a miracle. Trying to think of situations where this could end well. It was the longest of long shots. No miracle for me.

And so here we are, at a place of tough decisions. We can't keep doing what we've done. There is obviously an issue. I can get pregnant, but most likely the embryos aren't chromosomally ok. They won't stick. Or they won't stay stuck. Or they get lost in a freak ectopic situation. We have hard choices ahead of us. But at least we have choices. And right now I choose a break. I need time off. I need time to heal in every way possible. I need time to be a couple with my fabulous husband and not have the specter of 16 bygone embryos overshadowing us every minute of every day. I need a holiday season where Santa doesn't bring me butt shots, where I can have some holiday cheer without fearing that I'm screwing my egg quality. And then we can try again. In a new way. We haven't quite figured that out yet, but we have time.