Spokes of the Wheel

That summer we finally saw Paris, I wanted to wait for sunset to climb the forty steps to the roof of the Arc de Triomphe so we could see the lights of the Champs-Élysées blazing against an inky sky. We nearly missed it entirely. It was a balmy night in early July, when the long hours of daylight stretch well past 9:00, leaving a tight one-hour window between dusk and closing time. We raced through the Metro from the quaint brasserie where we lingered over the wild mushroom bisque, roast rabbit, and delicate crème brûlée of our final French feast before heading home to the land of Wonder bread and pale, pithy tomatoes picked too soon. We arrived breathless at the circle with less than ten minutes to spare, the arc gleaming majestically across the way and a veritable moat of high-speed traffic swirling around it. How the hell do you get over there? we thought as we frantically tried to solve this riddle, and for half a second, we considered dodging the cars to run across on foot, which anyone who has actually been there will tell you is a death wish. Then we found the staircase to the underground walkway, and like an action hero who narrowly escapes the predator by doing a baseball-slide under an almost-closed mechanical door, we were some of the last people waved through to the spiral staircase.

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The ascent was dizzying, twisting and twisting upward at a near gallop that was 1 part residual panic and 2 parts unfettered jubilation at finding myself among the stony innards of this iconic structure I had admired only in pictures for all those years of high school and college French.

That view from the roof sits squarely on the short-list of vistas where I felt my human smallness so fully dwarfed and transcended by the vastness of the sprawling world. The major avenues of Paris emanate from from the arc at its center like many hands on a clock, with street lights illuminating each arm in alternating red and green amid the twinkling of long lines of lampposts and store fronts.

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Many of the city’s most compelling landmarks sit eagerly at your feet, beckoning your curiosity and exploration, which was so bittersweet on our last night in town. But we make choices, and as much as each of those seductive avenues invited a stroll, we don’t often have the luxury of “world enough, and time.”

I thought of that moment on the top of the arc last week as I processed the results of my ERA biopsy, which came back “pre-receptive” and plunged the marginal pieces of my reproductive history that I thought I’d reasoned through and diagnosed back into inexplicable mystery, shifting and confounding clinical decision-making. The possible routes to resolution splay in every direction, each of them shrouded in uncertainty, many of them staking an independent claim on finite financial resources, all of them staking a claim on time when too many years have already been frittered away on fruitless endeavors. We are desperate for the fast-track, sulking and stranded on the sidewalk, searching frenetically for the underground walkway while the narrow window on my ovarian function is sliding inexorably to a close, weighing the outcomes in what feels like a painful algorithm of reliability against desirability, trying to decide how much stock to put in a diagnostic test with preliminary data when gambling with last chances. This is the game – the mutually exclusive choices, the allocation of resources when the evolving science can always offer something to try, a reason for hope: “two roads diverged in a yellow wood,” and all I want is to choose a path that doesn’t leave me “sorry I could not travel both.”

23 thoughts on “Spokes of the Wheel

  1. So frustrating. I’m stuck in ” pre receptive” world with you. I wish I could say something helpful about this diagnosis but I just don’t know what to make of it yet. I never did my follow up biopsy since for the last cycle and the one to come Im engaging in fresh transfers hoping that helps combat a challenged lining by sprinkling it with more “natural like” hormones. As you pointed out to me, era and timing of transfer is somewhat irrelevant in fresh. Since your body will start the “clock” upon trigger/ER.
    I did the biopsy after my second transfer of (1) each PGS normals. Both failed but one was an early m/c. Instead of another biopsy (since I had been on meds for like 6 months w no breaks) we tried to add one day to the FET protocol…and travsfer another normal. But as it turns out that was a mosaic with most likely little chance to implant. We did not know that at the time and so bfn was even more depressing. So the point to my story is I have yet to test out the era theories nor see if/when I actually go receptive. Would be great to know but I’ll explore again before I FET perhaps….or maybe never?
    Wish I was back in Paris too. Hang in there friend.

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    • We will follow the ERA to some kind of conclusion, but I’m not sure what it will mean since the data is scant. I hear they’re publishing more results in the new year? Such a mind-fuck. Of course adoption is the most logical choice with ovarian AND endometrial dysfunction, but…no. The whole process is too abusive. Love to you too, friend xx

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  2. I learn so much from you. I’ve never heard of an ERA biopsy. A quick google search on what “pre-receptive” means confuses me even more. I’ll ask my doctor about it.

    This is such an annoying time of year for so many of us. I am happy you will soon be skipping town to go somewhere hot.

    Thanks, again, for sharing your beautifully written diary. ❤️

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      • Oh, I am sitting on some good news. I am always interested in this type of thing–but mostly because I think about you often. I was pregnant with twins, not sure if you knew that. Baby B quit developing a couple weeks ago. Just putting all of my positive energy into what I have growing inside of me, and I know I am lucky to have this, but it’s stressful all the same (I’m a super old lady compared to you–and unlike you, I didn’t do any pre-transfer testing.)

        Take care, my friend ❤️

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  3. I’m sorry to see you at such a difficult crossroad. But the photos are beautiful. I used to enjoy taking pictures… It’s one of those things that suffered with the loss.
    Hoping you’ll find a road that leads to your take-home baby.

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    • Thanks, me too! Funny – when I was home after the loss, it was spring and all the flowers were in bloom (plus the robin’s nest outside my window) and taking pretty pictures was a good outlet/distraction – hadn’t really considered that before now.

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  4. Such a beautiful post for such a difficult situation. I’m sorry you’re in this place with so many decisions, so many bits of information that throw all kinds of questions into it, and such high stakes. Hoping for you and thinking of you.

    Joining everyone else here in saying the pictures are wonderful also!

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  5. I do find this scant science part difficult to interpret – I can’t help wondering if endometrial receptivity changes from month to month? What are the factors influencing receptivity?

    And of course, not forgetting that you did have a receptive endometrium before… so surely that can happen again?

    As much as science is trying to find the answers, (and having a medical background, I really like the science bit), I do believe that there are still so many grey areas where conception (and for that matter, medicine) is concerned.
    Sorry – this is not meant to be a negative comment at all – quite the reverse really.

    I think if your inner voice is saying go with the ERA process, then do so, but keep a broader perspective too.

    (Wish the stakes weren’t always quite so high- yuk!).

    In the meantime, have a much deserved, restorative time away with your husband. Enjoy soaking up the sun as the waves lap around your feet.

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    • I actually talked about this with my doctor ahead of the results and he reminded me that the window is more like 36 hours, so if the test comes back receptive on day 6 of FET/PIO, then it’s not so hard to understand. The other thing I keep thinking about is the 7 weeks of bleeding (and bleeding a LOT) from SCH that formed and drained and pooled again. I do know that they attribute higher rates of pregnancy complications from IVF now to poor synchrony between embryos and linings on fresh transfers since those higher rates of risk are eliminated with FET. My doctor said even chemical pregnancies are linked to this because embryos can implant “but not implant quite right,” which intuitively feels so linked to SCH: those vessels are supposed to fuse when invaded by the embryo, not break and bleed and bleed. So maybe the pregnancy doesn’t debunk the ERA but is actually illuminated by it? The data for this test is actually very strong (I read several of the studies) in that it is reproducible. 29-40 months after the initial array, they rebiopsied women and got the same receptivity results. The thing that I can’t wrap my head around is whether the original synchrony problem (my slow day-6 blasts tx fresh to a lining whose window was advanced a day by stim meds) even existed and how we explain years of natural and fresh IVF failure if my day-6 blasts were paired with an endometrium that is receptive a day or 2 late. That said, the clinic who designed the test distinguishes between receptivity window on a fresh/natural cycle vs. an FET cycle because the corpus luteum doesn’t function with the same measurable reliability as the PIO injection. (If that makes sense…and since you have a medical background).

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  6. Oh, how I feel this….”I want to choose a path that doesn’t leave me sorry I could not travel both.”

    I just tried to do the ERA biopsy…have been going through all the meds, etc….and, yesterday was a monitoring appt where it showed, I already ovulated..through all of the meds….how lovely. So no ERA this month. It seems I have been saying “next month” for the past 4 years…

    As for the reliability of the ERA, I am pretty convinced by all of the research and data. I’ve been studying this test for over 2+ years now, read every trial, paper and even contacted the creator Dr. Carlos Simon, and I find it extremely beneficial in giving some explanation for the “pre-receptive/receptive/post-receptive” endometrium. It is reproducible, and only a very small percentage are found to have “no receptivity” after multiple biopsies. Obviously, not much research has been done regarding the endometrium but, as we can see, at least the ERA test is paving a way towards a discussion about the importance of PET(personalized embryo transfer), which seems like an obvious addition to all IVF/FET cycles. One size sometimes does not fit all.

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    • There was some relief in having a *reason* but like the initial joy of finding out we had normal blasts from PGS, that was quickly swallowed by the confusion of what it all means. I was preggo from a day-5 transfer. How? If my lining becomes receptive late, then why didn’t my late-blooming day-6 blasts become babies on any of my fresh IVF cycles…or natural cycles, for that matter. I’ve read several of the papers and its is very compelling, I’ll admit, but my history makes it hard to trust. And of course I’ll never know and much of this is multi-factorial.

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