Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Monday, November 7, 2016

Hope Is A Thing With...Fangs

Hope is a funny thing. It's supposed to be this bright light, this thing that gets you through the bad shit. It allows you to believe that good things can happen, even in absence of any actual proof.

But when it comes to infertility, hope is difficult. It's a double-edged sword, because it can push you forward, but it can also push you to do more than is reasonable in the name of getting pregnant. And you can hope all you want, but sometimes you just aren't going to be that success story.

Last week I was scrolling around facebook, and I saw a video posted by one of my former clinics, one that was very research-based and fairly conservative. It featured a doctor I am fond of, personally, and so I watched it.

Oh how I wish I hadn't watched it.

It was basically about three breakthroughs in technology over the past several years related to IVF that has resulted in, "Some of the highest success rates I've ever seen in my career."  One is doing PGD on every embryo, and then transferring just one instead of more because the healthy ones are more likely to implant. Another is improved freezing practices (I guess they are doing vitrification now, which was being done in other places for years prior), and the last was delaying transfer until a month or two after retrieval, since FETs are now so much more likely to succeed thanks to vitrification and I assume letting the body recover from the trauma of extraction.

The video was very new-age-y, with music and a calm sonorous voice throughout, and very, very positive. "Our patients have more reason to hope than ever before."
"We are seeing success rates of  60-70%, sometimes even higher."
"Older patients have traditionally had lower success rates and higher miscarriage rates with IVF. But now with these new technologies, we're seeing the same pregnancy rates that our younger patients have experienced."
"Implanting just one egg avoids risk of multiple-birth pregnancy."

Did you catch that last one? IMPLANTING. Not transferring, although the term "transfer" is used throughout, but IMPLANTING. I can't tell you how much I hate that terminology, which is false and misleading. They don't implant the motherfucking embryo. They transfer it and HOPE that it implants, because if they could IMPLANT the damn thing, pregnancy rates would be 100% and there would be some serious voodoo magic going on. Please tell me that the ASRM (American Society of Reproductive Medicine) hasn't decided that it's okay to use the term "implant" for the transfer procedure. That one filled me with fury.

Now, I really do enjoy this doctor. Even though I did not get pregnant and stay that way, and we always seemed to fall on the WRONG side of every single statistic, I don't blame him for any part of that. He was also the only person to start the conversation of, "If this next cycle with your frozen 2PNs doesn't work, we will have that conversation about you choosing other paths to parenthood." Not exactly a come-to-Jesus moment, but the closest we ever got. (It's my fault that I heard that and promptly went to another clinic that would sell me more hope.)

Because that's what this feels like to me. Selling hope. It feels a little smarmy to me.

I will be honest, when I watched it, the thought did cross my mind...What if technologies have progressed so much that we have a shot? Maybe these new breakthroughs since we've been out of this game would do something for US!

And then I snapped out of it. And was so mad that even for that brief moment I entertained the thought of going back down the rabbit hole of treatment that did nothing but empty our pocketbooks and damage my emotional well-being and my reproductive system. I could argue that had I not pursued IVF, I would have both my tubes and I would not have uterine scarring. I'd probably still have those pesky polyps, but the others were a direct result of treatment and outcomes from that treatment. Not in a liability-laden way, but just in a matter-of-fact way. I am forever changed because I did 13 rounds of IVF, 10 transfers (since 3 were cancelled), 27 embryos gone the way of the dodo, 8 embryos off in Texas to be transferred to a hopefully more receptive womb in the couple who adopted them. WHY ON EARTH WOULD I GO BACK TO THAT?

But that's sort of the point of a video like that, right? It's a marketing tool when you shed all the emotional feel-good stuff of bringing healthy babies to couples who are infertile. I don't doubt that the doctor truly loves his work and that it is so rewarding when things work out. But it just reeked of peddling hope. And I felt like I was susceptible to the siren song, if only briefly.

It's so hard to know when to stop, to feel like you can say ENOUGH, when new technologies are always coming out. It's a strong thing to say NO MORE in the face of the continual hope and progress and nevergiveup mentality that weaves its way through the IVF industry.

Now, it could be that I am bitter because it didn't work for me. And I definitely felt bitter when EVERY SINGLE COMMENT on the video post was people praising the clinic and the doctor for all of their "Miracles." No joke, every one referenced their child as a Miracle. And that shit goes through me like a nail. Maybe I would have felt differently if I'd been successful, but I can tell you that when you fall on the other side of success rates, the term "miracle baby" makes you feel somehow undeserving of said miracle, like you were passed over or unworthy somehow of that experience and so were not blessed in that way. That is for other people, not you.

It's a shitty way to feel. These kinds of promotions also make you feel like you didn't do enough -- that you threw in the towel too soon, that had we only waited ONE MORE YEAR maybe we could have used these technologies. Did we give up? Did we fail to do everything possible? THAT IS THE FEELING THAT VIDEO INVOKES IN ME.  That and every person who claims that this diet or that acupuncture regularity or this leave of absence from work was the miracle cure that resulted in pregnancy.

There are so many ways to feel deficient, and it doesn't stop with infertility treatment. We are being told constantly to "Hang in there!" "Don't give up on your dream!" "It WILL happen, you just have to keep the faith!" with adoption.

Do you know what that feels like? It feels like if we don't adopt, if we hit a point where we have no steam left and we can't keep living in this limbo, that it's OUR FAULT. We didn't persevere enough. We aren't doing enough. We aren't doing private adoption, so are we really that dedicated? It's all UP TO US.

I know people who say these things are well-meaning. But, as much as I wish I had another seven years to give to adoption, I DON'T. We spent five and a half years doing the infertility treatment thing. It was too long. It took too much from us in every way. I don't have the same amount of time to give to another process. I wish we had started earlier, when we weren't so tired, so beaten down by always waiting for something amorphous that just doesn't seem to ever materialize.

I hope that we receive our call before the date we've set as our Hail Mary timeframe. It's a decent amount of time that fits into national timeframes for adopting, as opposed to the 6-9 months from homestudy to placement average that we were given by the agency (which isn't working for us, as we're in month 16). But as Bryce said the other night, "I can't do what we did with IVF. I can't keep this up indefinitely. I need to know that we can live our life at some point, either with or without a child, free of this in-between place."

It never fails to make me cry. This would not be the ending that I'd envisioned to this journey. BUT, there's enough time between now and D-Day (decision day) that I feel comfortable with setting it. And I hope, I so hope that our Mystery Baby comes before that day. Because hope can be helpful, but it can also wear you down, suck you bloodless, and leave you a husk of yourself as you put your life on hold for that chance at parenthood that should have come so much more easily than it turned out.


28 comments:

  1. Few things. First, if you haven't seen it here's Pamela's post: http://blog.silentsorority.com/human-side-of-failed-ivf/

    I agree this is selling hope. The clinics are marketing themselves because there is profit on the line. Though I do believe the intention of the REs is to help their patients, I also think money is at play here. And they are failing to see the harm of mixed interests.

    Secondly, none of this is your fault. I know you know that logically, but I will continue to tell you that. There's nothing about quitting or trying again or breaking yourself in half again and again that you haven't already done. It's just an incredibly shitty trauma.

    On that note, I wonder if a note to your RE about this would be useful. One could argue that it won't change a thing and he won't care. But when someone is in a profession that is suppose to help others, feedback over missteps like this tends to stick. Even if they don't want it to. I know me sending it would help me too.

    Thinking of you today

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    1. Oh, those were powerful videos, thank you. Yeah, money is totally at play, in everything. It's so funny, because Bryce wanted me to email our previous doctor with a link to this post. I don't know what that would accomplish. In some ways, he's just doing his job and for someone just starting out, that video would be a total bastion of hope. But for someone who failed, that video is failed opportunity and years of unsuccessful attempts and no miracles. I think he'd care, but I don't know what he'd do about it other than have a good think. I'll have to think on that one myself a bit here. Thanks for your thoughts. It's so hard not to internalize this kind of thing and feel like a failure no matter what I do. :(

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  2. Very powerfully written. I haven't read your entire blog but was wondering what your thoughts were on adopting an older child? From my recent reading, are you looking into adoption of only infants?

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    1. Thank you! So, to adopt an older child we would have to become certified through the foster care process, and that would involve extensive additional training so that we would be prepared for kids who've faced trauma. Older kids don't come to need new families through happy circumstances. It's a whole different ballgame. Also, with foster, you face the risk that this child could be yours to love temporarily, and there are many court dates involved and lots of uncertainty. I have friends who adopted through this process, and it worked for them, but it was so hard. I have suffered trauma myself and just don't think I can handle that extended fear of loss. I can assure you all of our decisions related to infertility and adoption are based on so much thought, so much weighing, so many T-charts. This option is the one that's best for us. :) Good question, though!

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  3. Jess, our stories are so similar it's crazy. I agree with you 100%. We are days away from being "approved and waiting" and everyone keeps asking if we're excited, but I feel like we've seen too much to be able to get excited about the idea of being parents again until it's becoming a reality. Here's to mystery babies coming soon!

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    1. I sure hope so! It's nice to have people in your boat, but a bit sad when it's a painful boat. I feel like I had the capacity to be excited far more in the beginning, and it renews when we have an opportunity (which totally makes sense), but when there's such a drought it's so, so hard.

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  4. Oh Jess I'm so sorry that you saw that video. It is peddling hope which is good for those people that are just starting on their journey, but not so good for those people that have moved on.

    You most absolutely did not give up!! You guys have been in limbo for so long and only you guys can make the decision on when to leave the inbetween place. I am hoping that you don't get anywhere near your decision date before Future Baby comes!!

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    1. Oh, thank you.

      I know they'd never do it because it would go against marketing, but I wish that they would offer information on people who haven't been successful. Maybe not when they're recruiting patients, but when you're availing yourself of the counseling and they have people who are struggling, it would sure be nice to have a support where people who passed through those doors before you could tell you you'll survive it. Maybe I need to write them a letter.

      Thank you. It feels sometimes like people will say things like "well, you gave up on trying" or "when you quit," and that makes me crazy. I hope FutureBaby comes before decision day too. But if he/she doesn't, then I will be sad but it will be good to know I can move on. I think I could...I don't want to, but I think I could.

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  5. My thoughts are with you. My heart is with you.

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    1. Thank you so much. Such a difficult space to be, but so helpful to have love and thoughts surrounding me.

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  6. "implanting" an embryo is definitely not correct vocab to be using! I think a lot of people think that with IVF you just put the embryo into a womb and then bang you're pregnant. The other side is not talked about so much. My clinic's handbook actually said that IVF doesn't work for everyone and if it doesn't work then you have to accept that. I remember thinking how harsh it sounded at the time but I guess they had a point! The problem is knowing how far to go before you should accept it's not going to work. I hate false hope though, doctors should give it to you straight.

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    1. Right? I thought that was WAY outdated BECAUSE it is so misleading. Wow, you have a great clinic. I so appreciate when both sides are represented, truly represented. It's funny, the harsh is that whole "cruel to be kind" thing -- I'd take someone who will dole out truth on this score before someone who will keep pushing for more even though it's clear it won't make a difference, in hopes of that Golden Ticket. Argh. I do have to say that this doctor was the one who was more straight, and I didn't want to hear it. Sigh.

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  7. I'm so sorry Jess. I wish I had the power to change something for you and Bryce. Truly. Big Hugs.

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    1. Thank you. We are doing all kinds of things to try to be as proactive as possible, but it's hard. I don't like putting a "deadline" on something, but I think for our sanity and quality of life we have to. It's not anytime soon, so there's plenty of time for things to come through. (YOU HEAR THAT, FUTUREBABY? PLENTY OF TIME SO GET ON IT!) Thanks for the hugs.

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  8. My heart breaks reading this post because I know all too well the feeling of pointless exertion and endless waiting in the cycle of being crushed and rebuilt by hope. I wish I could in some way offer a solution, but that is the jarring isolation of this: it's you and chance alone; we can only provide empathy and encouragement to listen carefully to what your heart says about your limitations and/or what you can or can't accept for the long-term. I am standing with you, feeling helpless to help, and supporting those choices, which are so hard to make in the face of marketing and family-centric America.

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    1. Oh, yes. Thank you so much for your beautiful and empathetic comment. That is it, jarring isolation. And it's like being inside a glass zoo exhibit -- you're all alone, but everyone is looking and talking about your very personal decisions, because they want to be helpful but it's often not so much. And you are so right, marketing and family-centric America. Thank you for your solidarity.

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  9. Oh god they are nefarious bastards. Surely no other branch of healthcare would get away with misusing terminology and outright lying in such a way? I get so fired up about this. I just saw that Pamela had circulated this post on Twitter, Jess, and I agree it's powerful. You put into words a lot of what I feel. Bryce is also very eloquent when he talks about "this in-between place" - it about sums it up.

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    1. Thank you. It's the marketing piece that makes me so mad, and I feel like sure there are people who will reap that success but there will be others who don't and who will feel bad about it because it seemed like such a sure thing. Hooboy, I am not on Twitter but I am honored to be circulated. The "in-between place" is so hard, and Bryce has always been better about putting his thoughts out there about it than me...we are both tired but he is really feeling the stress of everything. I keep telling Bryce he needs to write a guest post! :) Thanks for your thoughts, much appreciated as always!

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  10. Dear Jess,
    Thank you for this post and for openly exploring the complex and charged emotions that washed over you when you watched that overt misrepresentation of your RE describing the transfer process. I know well those same feelings. After nearly 10 years of blogging on this topic I am sad to see that instead of patient/consumers getting better/more accurate information they're being instead sold the latest profit-making procedure.

    BTW: You might want to read Avalanche. There are several eye-popping scenes including the one where the RE tells Julia as she is making the, yes, transfer: there's the baby.

    Your post, and many others before it, convinced me in recent years to refocus and expand my writing and research to call for reform in how this industry operates....sadly, i've seen too many women harmed and traumatized by it.

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    1. Thank you so much, Pamela. I felt so angry about it because that is terminology I've NEVER heard them use before, and it was actually shocking to me. Because I don't think it's changed, it's purely inaccurate.

      I actually did read Avalanche, and it resonated with me -- there were so many parts when I felt so HEARD, and that I've said or thought similar things, too. I wanted to participate in your book blog, but it was too close to the start of the school year and I was swamped and just couldn't make it happen. But thanks to you, and Mali, and Cristy, and BNB, and others I bought it and read it and absorbed it.

      I do think that there needs to be more honesty about when IVF DOESN'T work in the industry so that people go in eyes wide open. I feel like I got that far more with adoption than with infertility, which was all about hope and possibility and the "next try." Arguably I led the charge on that to some extent, but there's just so much out there that makes you think this controls the uncontrollable.

      Thank you for your comment, sorry I wrote a novel in response, and I so appreciate your voice and your advocacy in this arena.

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  11. The "implanting" vs "transferring" thing drives me CRAZY. I have noticed lately, probably since I'm on my "one last try" baby, this kind of stigma against admitting defeat in the baby making area. Knowing when to call it is an important part of any struggle, but especially such a physically and emotionally taxing one.

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    1. Yes, absolutely. I really, really hate when they say "implanting." And there is TOTALLY a stigma to saying ENOUGH, there is always a "couldn't you have" or "so-and-so got pregnant on their 15th IVF" or whatever, and all you see is the total mental breakdown that would have ensued. I appreciate your comment so much, because it's true that when you are struggling, you have to decide at some point when to keep going and when to move on, because it's just not healthy and can consume your life. Thank you!

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  12. My heart hurt for you several times while reading this post. It especially touched my heartstrings with the part about feeling somehow undeserving by not getting pregnant. You are both deserving to be parents. Unfortunately, your passion may not match the outcome. I hope it does and that Mystery Baby arrives soon. Time will tell if it will happen.

    Glad you guys are having conversations about the limbo. As difficult as it is, they are worth having. May peace settle into your hearts while you continue to wait.

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    1. Thank you so much -- logically I know we are as "deserving" as anyone else, but those types of statements bring that feeling out in me. The conversations about limbo are so difficult and inevitably result in tears for me, but you're right -- they are so important to have. Even our first homestudy meeting involved the social worker asking if we'd had serious conversations about what we'd do if this didn't work out, which was interesting. I like the time will tell, and I hope for that peace, too. I have it sometimes and then something rips it away, but I can always snatch at least a tiny bit of it back. :)

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  13. What a crappy video to find. It's good that new technologies are being developed, but really how many cases will they really help and how available will they be to the public. It doesn't seem to me like many infertility cases can be "fixed" or "treated": the procedures attempt to bypass the problem but it's still a problem or there's other unknown problems that get in the way. I guess that's one way I'm lucky at our clinic: at every appointment I hear some variety of "your fertility really sucks" so I've never had high expectations. I sometimes feel like people who have frozen embryos are very lucky and have it in the bag, but so many FETs don't work either. It's a good reality check of what might happen if we do decide to try DE IVF.

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    1. Seriously, right? It's a terrible video. I am CLEARLY not the intended audience, but maybe that makes me a good critic since I can see back to where I was when I would have eaten that up. I'm both glad and sorry that your clinic is so honest, sorry because that can't be easy to hear but glad because they're not blowing rainbows where the sun don't shine, making you question motives. I know it would be a real crap marketing tool, but I wish there was more honesty about how often it works, how many cycles it typically takes, and that there are people for whom it never works, in the end. I don't think I heard a lot about that piece when in the thick of it, they were always scary stories in the periphery, in the dark, instead of a comforting, "If this doesn't work out, life can and will be okay, at least eventually."

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  14. Dear Jess,

    I am laying in bed waiting for my 5th miscarriage. I just found out yesterday. I actually found your blog because I googled "teacher+miscarriage" to figure out the best way to handle it this time as I take time off during a very busy part of the year as an international teacher for AP classes. I just wanted to thank you for this post. Hope and fangs brought some humor to what currently feels like a pretty shitty situation. I actually just asked my husband to "kill the unicorn" this time because I didn't have it in me to be hopeful for the next cycle yet. Between our shared experience of teaching (I'm an English teacher with background in special education) and the infertility credentials, I feel like you're telling my story. Thanks for telling it with such truth. I plan to read your blog faithfully and please know you have a reader in Kazakhstan who is cheering for you and your husband. Please keep writing!

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    1. Oh, I am so very sorry to hear your news. That's awful, and I feel for you in this moment. I am glad this post brought you some humor and a feeling that someone knows a bit about where you are. Everyone's shoes are different, no matter how similar, but it is so nice to not feel alone. I don't love the reason for it, but I love the phrase "Kill the unicorn." So apt. I so appreciate your comment and hope that the cheering can be mutual, no matter which way things go in the end. Thank you so much for reading and stopping in to let me know! Love to you, all the way in Kazakhstan.

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