Insight fail, data, and the next steps

April 29, 2013 § 16 Comments

I like to think that I’m pretty insightful. When I start getting salty with the Artsy Engineer for no apparent reason or weepy at commercials, I’ve usually determined the etiology of the distress in no time. But I’ve been avoiding this space for the last few weeks, and, while I knew I was doing it, I couldn’t really put my finger on why.

And then Vanessa nailed it. And I was like, YES. Now I get it.

There was this barrage of good news among us, and I was riding on that wave. Whoohooo! Everything is good and golden and bubbly rainbows and we’ll all be pregnant in no time and isn’t life grand? And then BAM. Several of my favorite bloggy friends miscarried. And there were failed IVFs. And then I think what happened is that I promptly put my fingers in my ears and started singing “LALALALALALALALA” on the inside, as loudly as you can do something like that silently.

It was fairly easy to ignore all of you. (Not that I didn’t read. I still read. I just didn’t have it in me to participate.) I have a big deadline to meet (a first draft of the literature review portion of my dissertation MUST be in to my advisor in 7 days) and a trip to plan (sort of). But now that it’s been a few weeks, my strong desire to avoidavoidavoid and self-protectprotectprotect has lessened. And now I feel like a shitty friend who couldn’t stand the heat.

I hope it was (but maybe it wasn’t) a coincidence that it happened at the same time as Infertility Awareness Week, which is now over. Nothing like learning that you will not get pregnant via intercourse coupled with a string of bad results amongst you, my friends, to seal the nail in the infertility coffin. I belong here. And now I know. And I’m upset with myself for “missing” awareness week, because I debated for the last month about how I was going to participate. And then I just dropped the ball.

So, while I go ahead and sit with that (I was raised Catholic; guilt is a fairly comfortable feeling for me), I’ll give you a small/uneventful update about my ever empty ute.

It’ll be quick.

Status?

Still empty.

That’s all you really need to know, I suppose. But if you want more, here goes. Letrozole cycle number three resulted in a negative beta this past Wednesday. I knew it would. In fact, I stopped the progesterone a day early by myself. It just wasn’t going to happen.

We’re going to move on to IUI now. But, truth be told, I’m feeling pretty hopeless about it. See, I’m a stats woman. When I was a kid, I was terrified for years that someone was going to break into my house and murder everyone in my family except me. No amount of reassurance ever resulted in alleviation of this fear until it finally occurred to my mother than she was dealing with the child of two scientists, here, and that maybe she ought to throw some data at her. So at 8 years old, after being terrified for 4 years that my family would be murdered while I slept (I was never worried about myself, just everyone else), I finally chilled the fuck out after learning how few people are actually murdered, the likelihood that any member of my family would be one of them, and the percentage of those who are murdered that are either drug-related or killed by family members or people close to them. And then I was cool. Because no one in my family was going to kill anyone else. And no one did any drugs. And that was that. My odds of not becoming a child of murdered parents were good.

All of that is to say that when I am faced with scary or overwhelming things, I now go straight to the primary source. I read peer-reviewed research articles, and I make my own mind up about the conclusions. And as a result, I believe that IUI ain’t gonna do a damn thing for me. Is it possible? Sure. But it isn’t likely. That being said, I feel like I need to do a couple of them before I can justify moving on to something more invasive and more expensive.

I don’t want to bother with 3 cycles of regular old letrozole+trigger+IUIs. It just seems like a waste of time. But we’re not quite ready for IVF (although we’re probably close), and I don’t want to pay out the wazoo for injectables if I’m doing something that is about as likely to result in pregnancy as a blow job. While doing my lit review, I came across some recent research on an extended letrozole protocol. There are several recent studies that suggest that an extended protocol (CD1-10) is more effective than the standard CD3-7 protocol. For example, in one study, the extended regimen resulted in an average of three follicles greater than 18mm versus 1.8 in the short regimen. Pregnancy rates were significantly greater in the long regimen, as well (up to 18% for couples with unexplained infertility), and there was no significant difference between groups in thickness of the endometrial lining. Rate of multiples was about what it is with Clomid, so not too high.

I have no idea if this extended regimen has made the jump over from science to practice yet, but I called the RE’s office on Friday afternoon to ask if she was familiar with it. Trusty Dr. H was out for the weekend already, but the nurse sounded interested. She said that it definitely wasn’t anything Dr. H had ever done at the clinic, but she also didn’t shoot it down. She said she would put a note with several of the references I provided on Dr. H’s desk so she would see it first thing Monday morning. It is now Monday morning, and I have my baseline ultrasound at 10, so maybe I can argue my case there, too. It’s obviously too late to do it this cycle, as today is already CD4. But maybe I’ll have a shot at it for the next round.

Go data!

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§ 16 Responses to Insight fail, data, and the next steps

  • Data nerd! πŸ™‚ Just kidding- I love that you have sought out newer IUI protocols and brought them to your doctor. We all have to stay involved in what is going on in our utes. I know that the data on IUIs isn’t great, but you never know…

  • Amber says:

    “It was fairly easy to ignore all of you.” You crack me up πŸ™‚ The nice thing about this place, is that you can avoid, lurk, comment…it doesn’t matter, we will all still be here for you. You definitely have not been a “shitty friend.” You’ve just been taking care of you. There definitely have been a lot of downers from our friends lately, but the good news is that there have been some positives as well. It’s a gamble, for sure. My husband once said that he felt like we were paying an arm and a leg just for peace of mind in knowing we tried everything. At the end of the day, we just don’t want the regrets of not doing everything we could do to try and have our baby. If it doesn’t happen, at least we will know we tried. I still have lots of hope for you, my friend. Hang in there.

  • shafie says:

    I have been thinking of you. I want to tell you about this lecture my department chair just gave on her new research (IVF as evidence of the shifting political economies of gender under the kinds of ‘equality’ sold to women under neoliberalism, rather than rich people wanting designer babies). She basically tells people like us that we aren’t getting pregnant easily because of the stress of graduate school and that we won’t get pregnant easily after because we will be too old and that if we want certain kinds of careers we don’t have a choice. Also…things won’t change because we are supposed to be grateful for access to doctoral education and a shot at a job after a 6-12 month search (i know its a little different if you aren’t staying in academia) even if it isn’t equal and isn’t easy and we need to bust ass to have the slightest chance to compete with deep histories of less representation in leadership roles.

    SO….I dunno; maybe data was your downfall but it doesn’t have to be your demise.

    xoxo

  • Sadie says:

    Oh, this is *such* a tough one. On the one hand, we all love to feel encouraged when we’re slogging through this IF/loss stuff, and I know how much it means to me to know there are people in my corner who, even if we never meet, know some of what I’m going through. Truly, it keeps me going some days.

    But the reality is, it’s also fucking exhausting to think about this stuff as much as we have to; even our own IF and loss and general struggles, never mind the rampant realities of that stuff ‘out there’. I think it’s fairly normal to need a break now and then. I struggle with it sometimes too. I used to be an active contributor to a ttc after stillbirth forum and got to know some of the moms there quite well. But eventually, as we’re going deeper into IF stuff, I needed to focus more on what lies ahead of me, to hope, to not think all the time about the multitude of ways that babies can die. And so I stopped posting and although I keep up with a few of the moms there, I feel guilty about sometimes about my departure.

    Wow, sorry for the treatise. I guess, just…much as I always value your comments and encouragment, I understand. Don’t beat yourself up over it.

    Oh yeah, and I’m glad you’re with a doctor who’s so receptive to your ideas!

  • Gypsy Mama says:

    I don’t believe anything science related until I’ve read it in a peer-reviewed journal!! haha ok maybe that is an over-statement, but I do read them. I’m excited to hear more about this new protocol you found; we are moving on to IUI with donor sperm so I’m interested in anything IUI right now.

    And don’t let the numbers affect you too much (I know, easier said than done). We had a GREAT chance at IVF #2 and were unsuccessful. I had convinced myself that it would work because of the numbers and I think it made it a little harder to deal with the failure. I envy those women who go into treatment blissfully optimistic. The truth is, you just never really know when something will work so why not try to be optimistic. At least that’s what I TRY to do… but usually it doesn’t work!

    I’m glad you are blogging again, I’ve missed you.

  • redbluebird says:

    I’m guilty of focusing a little too much on the stats myself. But being on the “it’s not likely to happen” side of stats a few times now, I also have some hope I could fall into that category for something positive. You just never know. I’m hoping that’s the case for you.
    It’s great to hear you have an RE (and nurse) who take the time to read new research that patients tell them about. I know that’s not always the case with doctors.
    I’m glad your mother was able to put your murder fears to rest. As a child, I used to worry all the time about my house catching on fire while everyone was sleeping. I thought I was the only one with morbid thoughts– good to hear I’m not alone πŸ˜‰

  • First of all, I’m sorry for being one of the downers. I know it’s totally not my fault, but I have lots of that Catholic guilt you mention too, so I felt an apology was in order.

    Second – while you may have been quiet and while I certainly missed your posts these last few weeks, you’ve still been throwing out comments here and there, so I don’t think any of us (yes, I’m speaking for everyone!) felt abandoned. We all need those days/weeks to just deal with stuff in our own way. That’s only natural.

    And finally, I envy your research skills! I’m almost the exact opposite of this – going along blindly and doing haphazard research via Google searches. Most of my “preparatory research” came in the form of Skype conversations with a friend. I did my IVF fervently believing that it couldn’t fail. Then it worked. Then it didn’t. Now I’m trying to keep expectations in check.

    But make sure you don’t believe the negative too much – I’m just going by blogger profiles here, but look at how many of us have succeeded in time. Don’t give up (I know you’re not, but I still felt like I should say it). No matter what the odds are, we can’t predict the future. You can easily land on the right side of those percentages. We all can.

    • bustedoven says:

      Yup yup yup yup, everything Burnt Toast said!! Took all those words right outta my mouth.

      I’ve been really appreciating your comments, even though I had missed your posts. So I’m glad you’re back here! And I’m excited to hear what happens with the new protocol, and love your mad research skillz.

  • nickeecoco says:

    Femara worked much better for me than Clomid, so perhaps the opposite could be true for you. Everyone is different, etc., etc.?

    I am also very sorry to hear that this was not your cycle. I myself am skeptical about IUI because I don’t know anyone who it has worked for, but it seems to be the standard protocol for REs to try before IVF. An OB resident friend of mine actually asked at one point why IUI is done when it doesn’t really increase your chances of getting pregnant by much, and the doctor she asked just got very defensive and snapped that they wouldn’t do it for no reason…

    Anyway! I am rambling now. My advice is to not give up hope, and perhaps do set a limit on treatment before you’ll move to something like IVF. Since I have done this, I have felt a big weight lifted.

  • Aramis says:

    First, LOLing at the BJ comment. Second, I too am a stats and numbers girl, which is unfortunately quite disheartening most of the time. But it sounds like you have a solid plan in place! Third, I’ve been taking a bit of a break too…both from posting and commenting. I’m glad I’m not the only one who feels guilty for it. But we shouldn’t.

  • Ladyblogalot says:

    Same, same, I am all for the numbers and when it came to IUI, I couldn’t bring myself to do more than two because I knew it wasn’t going to work and even though I should have done three, to keep to one standard deviation more than the average, just in case, I didn’t and just did two. And they didn’t work. *sigh*. So now I’m on IVF and trying to work out how many tries we do before giving it up, I like to know these things in advance, but there really seems to be no average that I can run with. *sigh* again. And lady, I don’t mind if you drop in and out! Come and go whenever you want/need to.

  • SM says:

    I’ve read that study before and it almost convinced my RE to try it. I wanted to do it last cycle (since it was to be the end of out pursuit of treatments) but he decided against it. Thankfully, his decision paid off. I think I would give it a shot in your situation. It could be promising and it could pay off! What have you got to lose really?

  • YeahScience! says:

    Oh, I’m so glad to see you back in the blogosphere! What I love about this community is that the women tend to be very forgiving and there isn’t a ton of judgment if you need to take a break every now and then, or privacy-protect a few posts, or change your blog address entirely, etc. So don’t beat yourself up about it. πŸ™‚

    I totally empathize with the data cravings and I’m not even a scientist in the least — mostly, I rely on them for my fear of flying. Whenever it starts getting bad again, I dig up all the stats I can, right down to the particular airline I’m flying, and even if it gets to the ridiculous point where I’m neurotically repeating the words “safer than cars safer than cars safer than cars” over and over during takeoff, it helps.

    Re: moving forward, I agree that you should do NO MORE than 2 IUIs. At this point, you’re only really doing them because they are a cheaper way (compared to IVF, at least) of ruling out the possibility that the spermies are having difficulty getting past your cervix or swimming through your uterine lining. If it’s a problem with your eggs or tubes (and do NOT rely on those saline sonograms), you’ll have to do IVF. Anyway, definitely don’t fuck around with too many IUIs.

    Re: the Letrozole protocol — for all of my medicated IUIs, my RE had me on the regular-length (5 days, I believe) period of Letrozole, but then I was taking Gonal-f for 2 – 4 days until I was ready to trigger. I would definitely look into Gonal-f — it’s expensive, but it really does a lot more than Letrozole in terms of boosting quality and ensuring your eggs are properly matured before being released. The way I was informed, Letrozole was for quantity, Gonal-f was for quality.

    Anyway, enjoy this cycle off, and take your time prepping for step 2. The data is VERY MUCH in your favour of ultimately getting knocked up. πŸ™‚

  • JustMe says:

    You’re like me. Must come from getting a doctorate, huh? I don’t trust websites like Babycenter or…well, or anything, until I’ve read an actual abstract. It’s comforting to have data so we can interpret them in our own way and make our own decisions. It keeps going in pregnancy, btw, I am saving articles to cite to make my case regarding my choices for labor and delivery. It’s good to be a dork.

  • Flicka Mawa says:

    LOVE being a data nerd. I was once in academia too, and am skeptical of everything that I can’t back up with at least a journal article abstract. Don’t have full access anymore though so can’t get my hands on all of them.

    As I’m new to TTC, I’m trying to read everything I can about charting. I’ve had a couple times now where the time between OPK and temp jump was longer than expected, and I’m trying to find data on where in that window the O is likely to be.

    But in some cases, it helps to put it aside, too.

    I’m a new reader, but just thought I’d say I’m wishing you the best.

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