Tuesday, 2 September 2014

Elite Level Status

I believe that everyone who finds herself on this infertility journey must ask: how did I end up here? However some of us find ourselves asking: how did I end up here?

I remember when Myrtle first announced her pregnancy, I wasn't so much jealous of the fact that she was pregnant, it was that she made such quick work of it. After all, at that point in time, we had been trying for six long months! By the time we had a diagnosis of moderate male factor infertility, I wasn't bothered by her speed, but by the fact that she conceived without intervention.  I know my surprise spontaneous BFP  fostered some hapulosy from Co-worker as she had a negative home test 10 days after her planned final IUI. Ah, the dangers of testing too early, as her beta was 155 just four days later. In turn, I would become jealous of her IUI success as I went through five failures and knew I would be facing the dreaded IVF process. After my first transfer ended in a miscarriage, and my second two failed, I started to envy my cousin, who was a first time IVF success with a subsequent spontaneous conception. It feels like Alice in Wonderland, the further you fall down the rabbit hole, the more your perception changes.

I feel as if my membership in The Infertility Club has been upgraded to Elite Level status. I won't reveal the inclusion criteria; you know who you are if you're at this stage. The perks of getting to this point? A personal call from my RE expressing his disappointment. As usual, he presented the data, which is where he earns his money, but is not the most compassionate approach. Transferring only one embryo does reduce the risk of twins, but it's also associated with a higher failure rate. He added "don't beat yourself up about it." So is he subtly implying that I'm to blame for the failure because I elected for a single transfer, but that I shouldn't be too hard on myself? Was this an 'I'm sorry you're an idiot' apology? Husband listened to the voicemail message and thought that he seemed sincere, but is just very socially awkward. "The guy could talk his way out of getting laid" he observed. It's always interesting to learn a man's perspective.  

More than being disappointed, I feel frustrated. I'll ask again; how can my day 3 'your embryos seemingly suck, so your best chance is to just shove some up your uterus' desperation transfer result in a pregnancy with a lethal anomaly, and two grade 1 blasts (one proven eupliod) and one grade 2 blast with assisted hatching can't even generate a chemical pregnancy? I want answers, but I know that they may not exist. I feel as if there is something broken with my body. I'm not yet convinced that increasing the number of embryos on the next round is the answer. While we haven't had the gestational carrier conversation and I don't know if we're in a position to entertain the thought, I'm afraid to waste any more embryos in my uterus. More than anything else, I feel so discouraged right now.

I've been drawing inspiration from some fellow Infertility Elite members who have finally achieved their success, I still have some hope that I may join them, albeit fading. I do know how fortunate I am to have three more normal embryos (plus we have a bonus embryo with inconclusive testing). I also know that I sound like an asshole to lament that it's frustrating to know that donor gametes or embryos won't offer any advantage in my situation. This is it for us. It just feels like pursuing more transfers is representing Albert Einstein's definition of insanity: we're repeating the same actions and expecting a different result. While I'm still so terrified of transferring two or more embryos and achieving a twin pregnancy, it's starting to register that we may be too infertile to become pregnant with twins. I can imagine that my RE probably has the words unrealistically concerned about the potential for twins jotted in his notes. Again, I acknowledge that I sound like an asshole as some fellow infertiles would love to become pregnant with twins. As I never expected to have multiple miscarriages and repeated failures, I feel it is daft to merely hope that I wouldn't encounter the potential complications with a multiple gestation.  

At times I think back to my initial meeting with my RE, when he projected our odds with IVF to be "good" at 40%. I made a crack questioning how something with a greater failure rate could be considered good, but I don't think I understood the implications at that time. I really didn't see myself doing IVF. I guess a part of me thought it wouldn't come to that. Maybe I would be one of those lucky women who magically conceived after merely consulting with an REI. Well, I sort of was, but only for about five minutes. After miscarrying my spontaneous conception, I felt encouraged about my chances with assisted reproduction. When IUIs didn't work, I could fall back on the IVF option.  As my second cycle was so much more improved, it seemed reasonable to expect that it might actually work.  Now I wonder if I'll be that case that Misery and New Girl will always recall: Remember Jane Allen? 14 eggs retrieved, all fertilised -you almost never see that! Yet she still didn't become pregnant...

I'm starting to come to terms with the fact that it's statistically more likely that I'll be on the side of the 60% with failed treatment. I'm moving beyond my former OMG! I am never going to have a baby! overly dramatic self, to the more practical actually Jane, you may not be able to have a baby...and it will be okay. That's the other reward of Elite Level membership to the Infertility Club. A fabulous life still awaits.

23 comments:

  1. Additional IVF Pro-tip: Goo-Gone is better than isopropyl alcohol or nail polish removal at cleaning the residue from patches off your skin. Bonus! It's citrus scented!

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  2. While I don't have the list to put me in the elite level I do have the feeling that IVF may not work for us either therefore putting us in the category that we may not have a baby at all. So I feel in the elite level in the "thought" at the moment. This stinks all that you have been through!

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  3. I've never thought of it as elite - I like that word much better than the word I use when describing our infertility (which is chronic).

    This summer was the first one that I've ever felt a little bit of peace sneak in, thinking that, "yes, I will be okay if I don't have kids". It's difficult, and I never understood it when people stopped their fertility treatments without the baby they so wanted, but now I get it.

    The one or two decision is a hard one. I'm 35 (soon) and my CCRM doc surprised me when he recommended transferring two CCS normal embryos. It's a tough choice with no right or wrong answer.

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  4. I doubt anyone would consider me an elite member... my resume only includes four IUIs, one IVF cycle, and one FET. However, in light of the fact that I started this nonsense at 26 years old and was given crazy good odds (like 70% I would not even need IVF) I feel like an elite member. I can understand exactly what your feeling... I think the office talks about me too, "the young girl, that defies all odds and just WONT GET PREGNANT." Such a legacy.

    I'm so sorry that the transfer failed, Jane. It just doesn't make sense. I have to admit though, that I am comforted somewhat by the fact that even with all of your knowledge, you are frustrated by this mess as well.

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  5. Sometimes I feel like I've slept-walked through the silver and gold (OK, we got to skip silver level--no IUIs for us) and here I stand in elite, looking around and wondering WTF? I'm here? This is my reality? I'm picking out my children's genetics from what are essentially sound bites? How does this happen?

    I was just thinking the other day, this is the end of the road for us, and that's a scary place to be. I can't yet wrap my brain around the option of a child-free life.

    I'm getting pretty adamant about my desire not to carry twins, although B kind of wants twins. I'm going to have to show him some data as the anecdotal reports from the blogosphere isn't really swaying him. I'm just not sure I want to take those risks--at the expense of my children--just to complete our family in one go.

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  6. A fabulous life awaits no matter what happens. I'm sorry that you have made it to Elite status. I wish your doctor had more answers for you too.

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  7. While I'm happy you feel like you will be able to move on and live a happy life without kids should it come to that, I am still hoping with every fiber of my being that it doesn't come to that.

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  8. I am here with you at Elite status and I have that those thought all the time. I usually waver between 'how did I get here?' and 'when did this become my life?'. There should be some sort of free vacation or wine club that comes with the Elite status, in my opinion. Ugh, it just all sucks.

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  9. I was in your shoes about 2 yrs ago. With a diagnosis of unexplained infertility and zero explanation for why IVF was failing (implantation issues was the only thing the REs could agree on), it truly felt like I was spinning my wheels for no good reason.

    Looking back, I still can't give you a solid explanation for why our final cycle worked. After all, the testing we did (RPL panel and karyotyping) was not indicated and being prescribed Lovenox was considered unnecessary as I didn't fit the clinical definitions (and still don't). Frankly, I don't know if it was simply a matter of switching to PIO (my progesterone levels were always low, even with supplementation). Hence I won't even dare to recommend doing any of what I did.

    But I will pass on the same advice I got from others when I hit the crossroads: spend some time exploring your options. I did a LOT of reading about resolving not to parent after infertility (both through blogs and books), really began researching adoption and decided on a second opinion from another RE. In addition, I took a long break from treatments, which was by far one of the best decisions I've ever made. Ultimately, through exploring, my husband and I came up with a plan for moving forward that was fueled by some much needed rest and clarity. And we knew that regardless of the outcome we would be okay and life would still be wonderful because we were choosing to make it so.

    I'm sorry that this last transfer failed. And how I wish you had an explanation. I wish you luck with your journey ahead and hope that you find peace soon.

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  10. I can relate to this part so well that I could've written it in one of my posts.

    "After miscarrying my spontaneous conception, I felt encouraged about my chances with assisted reproduction. When IUIs didn't work, I could fall back on the IVF option. As my second cycle was so much more improved, it seemed reasonable to expect that it might actually work."

    I share your frustration and your grief, not because you've given up on having a baby, but the grief that follows you down an unexpected path.

    Also, I don't think you should feel guilty about not wanting twins or not wanting to transfer 2. You have such little control over this process. You should be able to voice your preferences and concerns when you can!

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  11. I remember three years ago, when I had just been diagnosed with DOR and a pathetically low AMH. My RE still gave us a 40 - 45% chance of success. I started reading infertility blogs and looking at the timelines and thinking "I don't know how these women do it. I can't be one of them. I can't go through all that." I think a lot of us have ended up surprised at how much strength we have in us to keep going beyond what we thought we could.

    I wish I knew the answer as to why you guys haven't succeeded yet. My gut is telling me that it's just bad luck, and not any major issue with you guys or your uterus, but of course I have nothing to back that up. You're such a vibrant, amazing person that I know even if things don't work out with your embryos, you'll turn it to your advantage. At the very least, you'll be rich with a hot body. ;) But like Amber said, I'm truly hoping that's not how it ends.

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  12. I'm sorry you are at this place. I am sorry you have reached Elite Status.
    I think that since you really don't want twins, you shouldn't transfer two. No matter what your RE says. Sure, it might increase your odds, but what if your uterus is feeling generous and decides to keep both? I put in 3 embryos thinking I was too infertile for anything to implant and look what I got.
    I also sort of feel like Einstein's definition of insanity can't be applied to infertility. There doesn't seem to be any rhyme or reason to whether a cycle will succeed or not. Why did this crappy 3-day embryo implant but this beautiful genetically perfect blastocyst didn't? I always felt like I was doing the same things (part of what bothered me about my doctor. Same meds, same everything. I wanted him to totally change it up) but each cycle was still so different. It's what's so infuriating about infertility. Well, part of what's so infuriating.
    I'm not giving up on you. I'm glad you are feeling like you will be ok if this doesn't work out, but I'm hoping you don't have to.

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  13. Agree with above - Einstein cannot be applied for this. We try and try again because one of those times, inexplicably, it just might work. There is no why to it, and there is no explanation, even when it does. It's a crapshoot. And that's the sucky part.

    I'm sorry you're at this place. I wish I had proper words to say but I don't because it's not fair, it just isn't, and there's nothing anyone can do about the unfairness of this shitty situation. No matter which path you choose, I'm rooting for you, and also as Jen said, I'm definitely not giving up on you yet. Not by a long shot.

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  14. Hi Jane - I found your blog through Amanda. I just finished a cycle where we transferred a grade 1 genetically tested "normal" embryo which resulted in a chemical prenancy. This was my 3rd fresh IVF cycle and my 4th transfer. We have transferred a total of 6 embryos now and still no baby. I'm also sturggling with our next steps as we have 2 frozen blasts that also tested normal but I'm also afraid of wasting them in my utertus if that could be the problem. I just wanted to reach out to you and let you know as a fellow member of the Elite group you are not alone. Thinking of you.....

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  15. Unfortunately, being promoted from the amateur to the elite bracket delivers no fanfare nor sneaker endorsement deals. I'd like to lie and say that there's some sage wisdom conferred upon you by the universe just for having survived for so long, but all you get is an otherwise useless knowledge of stimulation protocols. Furthermore, the one thing that has decreased is your tolerance for the amateurs that will probably achieve a successful pregnancy long before you and will ceremoniously proclaim how "they deserve this for having been through so much." Keep fighting the good fight. There is absolutely no evidence to suggest the need for donor gametes nor a gestational carrier. It appears that your body just doesn't like FETs. It necessitates reviewing alternative prep protocols. I know you hate Estrace, but maybe you should consider it. Maybe a natural FET isn't precise enough in timing and your uterus is finicky. You and your RE just need to figure what's the missing puzzle piece there.

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  16. Ooo I guess I am at elite status as well! I love your attitude at the end of this post. I think that comes the further up the elite status you go. I used to be so frantic to have a baby and now I feel like I am just taking it as it comes and though I hope it happens, if it doesn't, I feel like I can handle that a lot more now. Continuing to root for you!

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  17. Being that I also feel I am in that elite status, all I can think of is this is not something I want to claim- no one would. I am sorry for all you have had to go through to have your baby. I hope you find what will get you your sweet baby. I do not have the answers... However, my thoughts in reading this- maybe transferring 2 embryos would be okay? We just transferred two tested embryos in our gestational carrier and she is pregnant with one. She has had four of her own babies prior to this. It made me think gosh if two don't implant in this woman who is good at having babies, what hope is there for me?
    Anyways just some thoughts- I don't know if they will be helpful or not. Wishing you all the best and hoping you are pregnant soon. Figuring out how to get to that point is such a battle!

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  18. When you said it feels like you're meeting the definition of insanity...I so get that feeling. All anyone going through this can do is minimize as many variables for failure as possible and continue to try. It's maddening to hear that it only takes one good embryo with the perfect conditions in the uterus, and it will work eventually, but in the end it's true so many times. Sometimes it happens just as you're about to give up too...at least that was the case with us. Last embryo standing, and of the "poorest quality" of them all. As much data as we try to look at and use to plan, sometimes it's one of those things where it just FINALLY clicks out of the blue.

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  19. Oh man, I hate this so much. SO much. I feel as though I were a member of that crappy elite team and I'm honestly still shocked that I'm not right there with you anymore. Please know that I know how you're feeling. I wish I had answers or advice for you. I wish I could tell you what to do to make it work. My heart aches alongside yours. I will say, though, that if you're not ready to give up- don't! Keep fighting and know you have lots of women praying for you and your miracle baby! XO

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  20. Elite status is a good term, but I'm so sorry you are finding yourself as part of this club. Like the loss club, it's not one anybody ever wanted to join. It must feel like insanity, but, as others have shown again and again, it can still work. Perhaps it is more frustrating for you as a medical professional that none of this seems to make sense? I know that I found it incredibly frustrating that, when my cervix was short and then my water broke with the twins, that there was no evidence-based treatment that had actually been shown to work for twins, and hence very little was done - I would have wanted to throw everything and the kitchen sink at it, for at least a chance, even though I could rationally understand that the lack of evidence was a substantial problem, especially as my own body would be involved in all of this, too.
    Thinking of you and hoping that one of the remaining embryos makes it through - if it has to defy logic along the way, so it be.

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  21. As an "elite" member who finally had success on IVF #4/DE IVF #3 it's easy for me to say "just keep trying!" But I know that's not right and practical for everyone. I am glad you are feeling like there will be a good and happy life regardless of the outcome of future treatment. I think that is true and important for your sanity

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  22. Oh Jane. I'm so sorry your FET failed. I wish I had the answers or something to suggest. New RE maybe? I just hope that you're able to become a mom but I'm glad you're reached the place that you'll be happy no matter what. It takes an Elite member to get there, for sure. Hugs!

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  23. I'm sorry it failed too :( I feel like I'm fairly elite with 13 failed IUIs and our 3 Ivfs with the horrific stillborn of the twins. I admire you for just transferring 1. I got greedy after 2 failed IVF and transferred 3 and lost them all. I always wonder if I would have kept them if I could have had the patience to do 1 at a time. I hear sadness in your words but strength as well <3 love to you.

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