Fear is a burden
It comes in waves, sneaking up on me, crushing me when I least expect it. Panic. Fear. There are days when I feel like I’m sitting underwater, the pressure sitting on my chest, like a physical manifestation of the huge obstacles in my way. It sits there, unmoving, and I slowly suffocate.
I had the appointment with my RE today, the consult to talk protocol and plans for this next cycle. I went in with a little bit of hope that he’d have some new idea, some new research paper, that could point us in the right direction. He didn’t have any. I wasn’t shocked by that, but I was a little disappointed. We’re going to do the same protocol as last time, he might change dosage very slightly as we go. Last cycle went very well for me, so it’s truly not a terrible thing. At least we’re in a better spot than we were before the last stims cycle. At least this one has a much better chance of giving good eggs.
But it’s the eggs, it all comes down to the eggs. After talking for a bit I said to him, “I’m guessing you’d recommend putting in more than one this time.” He certainly does. For me his recommendation is transferring 2 or 3 embryos at day 3, or 2 blastocysts on day 5. At this point it’s pretty clear I am not a “normal” IVF patient, and just don’t fall into the normal recommendations. I observed that my implantation rate has not been good. He told me that the research is showing that women with low oocyte maturity – people like me – seem to have a much lower pregnancy rate than normal patients…. our eggs just don’t stick very well. Even though they look like perfect embryos, dividing and growing and getting a really good rating. There’s still something just not right about them.
He made a mistake, though. We were looking at my full IVF history, with my losses and everything, and he said how just unfortunately I’ve been. I was quick to point out that I did get a viable pregnancy with my own egg, a healthy baby… that my stillbirth was a freak accident, and not connected to this egg immaturity problem. He said, “We don’t know that for sure.” My thoughts froze. I acquiesced and conversation moved on, but inside my head I was saying, No, no, no. Don’t say that, it’s not true. It’s not true. Don’t put those thoughts in my head! I’ve spent the rest of the day with a little voice in the back of my head wondering if it was possible. What if something is truly that fucked up about my eggs? Devin’s placenta was small, he was small. Maybe what killed him was a freak accident, but was there something else wrong? Was it really truly a complete fluke that I have these two really rare things happen to me… or are they connected? After returning to work I wanted to huddle in the corner with my hands pressed to my ears, as if that could keep my fears – my paranoia – at bay.
I left my appointment with my light jacket pulled haphazardly over my head in an attempt to protect myself from the downpour, but I couldn’t throw a cover over my heart. I am so broken. I sat in the car for a while, called Den, replayed thoughts and numbers and realizations. When he was talking about my eggs and pregnancy rate I knew he was right. I’ve known the truth for a while, but today it hit me full-on. Hearing the doctor say what I already knew made it real. There is something very wrong with my eggs. All of IVF is a gamble, but for me they truly are shooting in the dark. All the normal statistics just don’t apply.
I will be transferring two embryos next time, because I have finally accepted that the chance of me getting twins is pretty much nil. As much as I want to believe it has something to do with the cycle, the quality of the egg…. the last cycle really blew it out for me, I think. A perfect blastocyst, from a stims cycle that produced a embryo that led to a pregnancy, a FET without the demands of stims… it was the ideal cycle. If any of them were going to work, it was. And it didn’t. It simply didn’t. Once the possibility of twins – and the higher risk that entails – is removed, then transferring more makes sense. I need to be pregnant. Maybe this will help it happen sooner.
But the thought also panics me. I have only two stims cycles left under my insurance coverage, and whatever frozen transfers may result from those stims. That’s it. Total, lifetime. I know it seems foolish, but I start thinking about how it is looking more and more that we will never get the two living children we’ve always wanted, to raise together. And sometimes, when I am feeling really low, I wonder if we will have enough to bring home even one. It does seem like 2 stims cycles and FETs is enough to get me pregnant at least once…. but what if I lose that one, too? It just doesn’t seem to be enough of a buffer. I’m suddenly staring at the end of the road drawing nearer and it’s freaking me out.
Back when we started this journey into IVF we had only 2 stims cycles covered, but that seemed like plenty enough. That was back when the chance of pregnancy was over 50%, when stims cycles would result in a basketful of eggs, where babies didn’t die and miscarriages happened to other people. Now I’m adding it all up and it scares the shit out of me.
My doctor told me I’m handling all these disappointments and losses with a lot of grace. And I am, in some ways. But he doesn’t see how my grace is based entirely on the faith that this will work out in the end – that all of this pain and suffering will be worth it when I bring home my child. And he doesn’t see how very dark it gets when I allow the possibility that this won’t end well at all.
*big hugs* When I read what your doctor said to you about Devin I became very angry. DON’T EVEN PUT THOSE THOUGHTS IN YOUR HEAD!
I am glad you are thinking about putting in 2. And I hope to hell that it works! I hope with all my heart!
fx!
Oh Nat. I’m just, I’m hugging you close.
Ugh, at the risk of sounding totally cliche, it gets darkest before the dawn.
I know the platitudes don’t really help. Right now you’re at the point where you wonder if the sun will ever rise again. And I can’t reassure you that it will and it just breaks my heart. Oh Nat, I wish I wish I wish. I wish I truly had some power to just make it happen for you.
(hugs) Why does the world have to pick it’s most wonderful people to pick on?
I honestly think that the doctor said that without thinking. You know what happened to Devin. As far as I know, nothing to do with amniotic bands has anything to do with the quality of the eggs in which the child was conceived with. Devin may have been small and his placenta may have been small, but until that freak accident, you were growing a perfectly healthy baby. I think sometimes when doctors themselves start becoming stumped as to why things aren’t working, they start doubting everything and they start to throw some of their own doubts onto the patients. It’s hard to remember that doctors are human as well and are capable of making poor comments and judgment calls, but just remember b/c the doc said that, doesn’t make it anymore true than it was before.
Remember what I told you with the ectopic. Regardless of the fact that that pregnancy ended the way it did, it was and is still proof that you are capable of getting pregnant again.
What Raychel said. This just breaks my heart for you.
Reading this makes me so angry and sad at the same time. How could that doctor say such a thing? There cannot be a correlation between IVF and how Devin passed on. And so what if he was small? Size doesn’t really matter in the end. I know because a friend of mine has had a baby which was small and is now a healthy toddler. My friend is pregnant with her second child, this one is also small, but it will also be a healthy infant.
Anyhow, you WILL get the baby you so long for. I know this for certain. HUGS!
((((((((NATALIE))))))))) I am really hurting for you. I have some inkling of the fear and despair you feel, though I’m not at the same point in the journey that you are. I have no words of wisdom of course, only the eternal hope that next cycle will be THE ONE.
I was very surprised to read what the doctor said about Devin. It does seem to me that he was sort of shooting in the dark, grasping at straws. Just remember one fact for sure: amniotic band syndrome did not start with you. It has happened to women with normal eggs who conceived in the normal way. I’m sure your own research has made that clear.
Wishing you only the best possible outcome for next cycle.
My heart is aching for you.
I am so sorry he said that to you, the seeds of doubt grow quickly with that kind of fertilzer. :( I agree with the above though, that he spoke without really thinking about what he was saying. The amniotic band problem was NOT a result of any sort of egg problem.
Sigh. Have you read about eating walnuts and drinking fresh pineapple juice after transer? Couldn’t hurt…
I wish I had some words of wisdom to give you to make your fear and sadness go away. First off, your doctor’s off the cuff response that “we don’t know that for sure” only points to the full on mystery of life. RE is one of those sciences that are 50% an art-there is no 2+2=4. Please don’t let that comment have you spiral to the depths of sadness. There is no scientific reason to assume they are connected. You have more important things to think about- like getting pregnant- you don’t need this added burden and I hope you can put it out of your mind.
I know how the insurance cverage piece looms high- it sucks that we even have to think about it. Let’s just focus on today for now- this cycle. Putting in more than one makes a whole lots of sense. I’m using DE and I still want to put back 3 (I won’t). But it is never 100%, even in my case, and I want the most opportunity possible to end up with 1 live one. If two feels good for you now, that’s great. it certainly is the economical way to do it.
I am continuing to send you good wishes and hope for a smooth and easy implantation/pregnancy.
Lisa, that’s it exactly… he lives in a different world of science, and by no means did he mean that he thought it was connected, just that there are no known factors in any of this, no absolutes.
Raychel, yes. I have proven that I can get pregnant again. And I will.
{{{HUGS}}}
Here from L&F.
Thinking of you and sending you hugs.
Natalie, I am so sorry for the fears and doubts that have been placed on your shoulders right now. I think that is just a natural by-product of a trying fertility battle, and somehow it is often the RE that plunges us into our deepest fear points, even though I am sure that is not their intention. In any event, I just wanted to reiterate like the other posters that Devin’s death and your egg issues are wholly unconnected and it was really quite reckless of your doc to put that thought in your mind (although I am sure he didn’t mean to intentionally further frighten you).
In my battle, we lost a healthy boy at 15 weeks for reasons unknown, and I too had what was once thought of as an egg issue. Even though our son was chr. normal, REs made the same connection with me (our miscarriages and general fetility issues, and his loss), and from that point on I lived in very real and constant fear that my eggs could never create a healthy baby. I realize, in retrospect, that docs sometimes say this b/c they are truly unknowing as to how such uncommon things could hit the same person, so it’s sort of a mysterified, shrug-of-the-shoulders, “yeah maybe they are connected” kind of information. But the power they weild as our medical specialists make their words hold more weight than they should in this kind of situation, and it leaves us devastated.
So I do understand where you are with the fear. But just know that he was just making a passing comment that I am SURE he would take back now for the amount it bothered you and its sheer lack of anything but a wild guess and attempt to keep talking.
I do not think his comment on your eggs was unwarranted, as you also fully recognize that something is not normal. But the Devin link- just not true. And what that should leave you with is confidence that you CAN make a healthy baby with your eggs, even if their performance is slightly impaired. I know there are other fears with the cycle #s and the insurance money running out, etc.
But as a previous poster said, just one step at a time… Hopefully, if there is any fairness in this world, you won’t have to fret about any of this much longer.
I’m so sorry. I can’t imagine how those words must have hurt.
Here from L&FCA. I’m so, so very sorry. Every time we get bad news or a hurtful comment, the wave hits us and it doesn’t matter how objective we try to be–we still feel like we’re drowning. Sending hopeful thoughts your way.
Very touching, and I’m so sorry for your loss and struggles. I know where you’re coming from with the burden of fear. My hopes and prayers are with you.
My heart is breaking for you. Sending you lots of {{hugs}} and good thoughts and prayers.
Oh honey, I am so sorry that new fears have been piled on what already was a full plate. Don’t lose hope, if you feel you’re losing hope, know there is a community filled with hope for you. *hugs*
Here from LFCA to offer an ear, and some hugs. Keep the faith, whenever you’re able.
Ditto on what Ann said. Sending you and the eggs some love and hope from up north!!
..via L&FCA
Sending hugs…
(from LFCA)
I’m still here. <3
When looking a few steps down the road becomes too painful, I try to remember that I don’t have to. I’m sorry that you are in this place. Bu try to take it one day at a time. Your universe will sort itself out along the way.
(((HUGS))) Thinking of and abiding with you.
You do have grace. I hope your upcoming cycle fills your belly with a healthy baby!!
Nat. . .I think of you often and send many thoughts your way that a baby is in your very near future. One step at a time. . .one day at a time. hugs.