Showing posts with label expectations. Show all posts
Showing posts with label expectations. Show all posts

Aug 12, 2012

what we (think) we are owed

A few weeks back, Y and I went to our first infertility support group meeting. I am not sure that it was super helpful to us because most of the couples were at a different stage of their infertility journey, but the facilitator was great. One comment she made in particular stuck with me.

She said that when we first set out trying to conceive, we think that we are going to get the gold -- the gold being everything we want and on the time scale we want it. And then maybe it turns out it is taking longer than we thought and we need a little pharmaceutical help -- we are now going for the silver. Maybe then it turns out our problems are in fact pretty big so after the silver doesn't pan out, we're going for IVF  -- now we're aiming for the bronze.

Maybe after that we are in a position where we are getting comfortable with the idea of donor egg or a gestational carrier or we are pursuing adoption, and so we give up a little more of the original dream. I don't think the point was that any of the outcomes that aren't the first one -- everything we want and on the time scale we want it -- is somehow ultimately less good, but more that in order to get it, we may be finding ourselves sacrificing more and more of our original vision and all the while time is passing.

The truth is, I don't remember the original context of her remark, but it crystalized for me something really important. When we found out we were expecting twins and then later on, when we found out we were expecting a boy and a girl, I felt like everything that had been taken away from me in this journey was suddenly and unexpectedly gifted back, just like that.

In other words, we were going to get the gold. It wasn't without lots of sweat, tears, perseverance, sacrifice, and hard work, but we would get our happy ending -- what we were owed. The world was suddenly a fair place again, just as I had always known it to be until infertility and loss entered our lives.

We would have the two children we would have had if we had control over our reproductive fate and in the same time frame! A son and a daughter! It seemed too good to be true, but we did work really hard to get there, so why not? Why couldn't we have it all, get the gold, after our shit luck until then? It happens to others in the infertility community all the time, really -- from zero to two -- just like that.

Everything that happened to us until then infertility-wise sucked but it was tolerable and livable. It was something I was willing to put up with and rationalize, if we could then just get our happy ending. For lack of a better term, it was all within the realm of normal infertility suckiness. Par for the course.

And while it might have seemed sudden and unexpected when it finally worked and we conceived two beautiful babies, I felt like we deserved it because we are fundamentally good people who had worked very hard to get there. (But the unanswerable question that many of us avoid altogether in the moments of dazed self-congratulations then becomes what about everyone else on a similar road who has not been granted the same good fortune?)

Owed, deserved -- what dangerous words and concepts these are. I think you can probably already see where I am going with this.

I wasn't naive about the risks of a twin pregnancy -- if I look back at my posts during that period of time I don't think I was every really happy-go-lucky or flippant about the pregnancy. But deep down, even when the pregnancy became complicated, I fundamentally believed we would get our take-home babies -- that this would be very hard and scary, sure, but that we would also all make it out of this alive.

Even if you are particularly anxious and fearful, I don't think you ever really believe that you will be the horror story. In fact, isn't imagining the worst over and over again supposed to be some sort of protection mechanism? I am pretty sure that I subconsciously thought so.

So, obviously, in the end, we did not get the gold -- we came really close but we didn't get gold. Or silver. Or bronze. Actually, we didn't even place, we just pretty much careened off the course entirely.

What I want to get back to is this idea of what we are owed and what we deserve. It is something I struggle with in the present constantly -- this notion that we do all of this stuff and go through all of these trials and therefore it has to lead somewhere. It all has to be for something -- to ultimately fulfill some purpose.

But sometimes it's not.

Many times I see that women who have achieved their happy ending attempt to rationalize what it took to get there and find some meaning in it. For many of us, the journey can never just be an endless trek of failure, pain, and suffering -- it has to mean something and it has to have all been for something. The alternative is just too depressing and soul-crushing. It is not too difficult to rationalize the journey if you do get the happy ending, as I would have if Aminadav and Naava had come home with us.

But what about when that doesn't happen?

I know now I will never get the gold. I missed it entirely. What I mean by that is even if I do eventually get my living child(ten) in one way or another, I have lost too much that is irreplaceable for it to ever 'make up' for what I have experienced and what I have lost -- there will forever be my son and daughter missing from our lives, and that is not something fixable.

Until I lost them, the loss and sacrifice that I had experienced along this road deeply affected me, but there was nothing I had given up or lost that was unredeemable or unforgivable with the good fortune of the twins. It's not that I would forget the journey, but I was willing to bargain this for that and this (6 IUIs, 4 IVF transfers, a miscarriage) certainly seemed 'worth it' for what I could get in return (a son and a daughter).

How do I shake this idea of being owed a living child for what I have endured? It is so naive -- and yet a testament to how good and straightforward my life was until infertility -- this belief everything I work hard at will be handed to me. Life doesn't really work like that, I know, but part of me can't shake the idea.

When I had the very early miscarriage that resulted from the IVF cycle we did after losing the twins part of me was like "C'mon -- what did you expect, A? Of course it didn't work out. It never works out for you. Don't you get it by now?" but part of me was suspended in disbelief "How could it not work out -- after all of this don't you just deserve for things to work out?"

Part of me just can't shake the belief in the Very American Happy Ending. Hard work = a great reward. I try to shake it but there is a girl underneath who still believes in it. And yet it is ultimately so damaging to subscribe to that idea when life keeps throwing lemons at you -- if life hands us what we deserve, what does that say about Y and myself?

I still try to bargain all of the time. It is disastrous. I think to myself -- if we couldn't keep Aminadav and Naava, then the second best thing would be to have twins again. A second chance. We deserve to have twins. Twins are so special, I think.

But I know this is totally unrealistic, especially because we plan to only do SET in the future (as we did with our last IVF) since another twin pregnancy is too dangerous for us. Even if we did transfer more than one embryo, realistically our chances of both sticking around are quite low given our IVF track record.

I keep reminding myself that the goal is to have one healthy, living child who I can carry to term. Let's not get ahead of ourselves and get greedy, here, I tell myself. So I guess along side mourning the loss of my particular, beautiful twins,  I also mourn the loss of ever having twins again, which often felt like something special to make up for the lousy hand we had been dealt until then.

I have lost too much to ever think I can have it all again -- the gold has clearly evaded me -- but still there is that stupid quiet voice who says don't you deserve a happy ending? This can't all be for nothing, right? Aren't you owed a living child? Or two.

How about you? Do you struggle with this idea of being owed something or deserving it? Did you feel the gold or silver or even the bronze was taken from you only to unexpectedly get it all back (or not)? If you've had your happy ending, do you rationalize what it took to get there?


May 18, 2012

in which my body made the choice for me...

This round of IVF has become somewhat of a disaster. My right ovary is on vacation, not responding at all. The ultrasound technician says there is something on that ovary, probably a cyst. My E2 was very low at baseline so whatever it is, it seemed unlikely to be functional and interfere with things, but it is now the only explanation of why my right ovary won't do anything. I am now on 2x my usual dose of stims trying to max out what the left side can produce.

None of that in of itself is so terrible, but yesterday my progesterone more than doubled. In short, this means the environment is no longer supportive of implantation, so the plan is to cut the cycle short, do retrieval on Sunday, and then likely freeze whatever we can get in terms of embryos. If we get 3-6 eggs, I don't think we will have much in the way of embryos, but things don't look good for a fresh transfer this month.

The other problem is my uterus. When I had my follow-up scan after the operative hysteroscopy, there was still a small amount of residual "stuff." The gynecologist wanted to wait until I had a good bleed and do another scan at the beginning of my cycle herself to see how things look and then send me for another diagnostic hysteroscopy if things still didn't look good. Then I got the crazy idea that I wanted to do another IVF before we leave for Y's fellowship. And I got lazy. If I needed to get a baseline scan at the fertility clinic anyway at the start of my cycle, I didn't want to also trudge back to her for a baseline scan as well. She said that was up to me, I should just let her know how everything goes.

The baseline scan at the fertility clinic wasn't perfect, but it was good enough for them and I explained to the ultrasound technician the context, so she knew what she was looking for. She said my lining was very thick for the beginning of the cycle and that there was a small echogenic area which could be something or nothing, but at any rate, it was probably on its way out with my period. My next two scans were both with different technicians and they both said my uterus now looked fine. Cue major sigh of relief.

Yesterday was yet another technician. She said there was a small amount of fluid in the uterus (never a good thing) and that there is still an echogenic area with blood flow (not good at all). Also, my lining is inexplicably getting thinner instead of thicker. I don't even know how that is possible. Now my RE says he will take a look at the uterus as well when he does my ER but a fresh transfer is likely off the table anyway due to the rising progesterone.

I guess my body decided for me that it is not ready to make and carry another baby yet. I am quite sad and frustrated because I don't know when our next opportunity will be to cycle again since we are leaving for a year. I know it was wishful thinking to have a smooth and successful IVF so soon after losing the twins and I know I have been a lot less emotionally involved in this cycle than I usually am, but honestly, I am still not at peace with this and it makes me so sad. I come back to it every time - I will never understand why this has to be so so hard.

May 14, 2012

i have a secret

I have a secret. I am currently in the middle of an IVF cycle. (Wow it feels good to say it.) A little slip-under-the-radar IVF before our one-year sojourn in Toronto for Y's fellowship and the end of our amazing Israeli fertility coverage until we return in summer 2013. We aren't telling our families or anyone, really (except for the internet, apparently) about this cycle. It feels quite liberating, in fact - this covert IVF business. It suits me and I think we should keep our reproductive pursuits under wraps more often, as far as family is concerned. Or at least be much more vague.

In the off-chance that all the stars align and I win the reproductive lottery, both by becoming pregnant and then remaining pregnant long enough that the baby is viable before my body sabotages the pregnancy, it would be my ultimate fantasy to tell no one at all of the pregnancy; rather, I would just show up one day with a robust, squeaking, living baby safe in my arms.

Everything about this IVF is actually pretty liberating. It is so vastly different from my previous cycles in that I really don't care. I know I will be truly, honestly sad and disappointed if it doesn't work, but in the past I was really short-sighted, and that made the consequences of a failed cycle seem much worse. What I mean by that is that it felt really high-stakes when I viewed the worst possible outcome as either a failed cycle or an early miscarriage. Now my deepest fears lie elsewhere.

In the past, I was obsessed with having complete control and doing everything just right - the IVF meditation CDs, acupuncture, reciting tehillim (psalms), eating well, nutrition supplements, knowing the size of my follicles and E2 off by heart at any given moment, actually handling dangerous chemicals in lab with caution. I believed that no one was more invested in the outcome of my cycle than myself so the weight was on my shoulders to do everything in my control to get everything just right.

My control freakery has at least temporarily been replaced largely by indifference. It is too early to say whether my newfound zen is the real deal or just a temporary manifestation of apathy that is part of my mourning. For now, I am just injecting whatever medications in whatever quantities my doctor recommends and trying not to think about it much beyond that.

The decision to cycle this month was actually extremely impulsive and last minute - as in, we had a vague and general conversation with Dr. T. about cycling again before the retained placenta disaster and then I woke up bleeding one morning last week, shocked myself, and asked Dr. T. whether he would support me in doing something really nuts and allow me to cycle right now. The next morning I went in for a baseline and got my prescriptions and that evening I started my injections.

I knew Y was secretly delighted when I called him at work to say I had my period and was thinking of calling Dr. T, though he had done a really good job not explicitly pressuring me to cycle when I didn't feel ready, which I really appreciate.

I also know it is a little radical what I did - leaping off a cliff with my eyes closed and deciding to cycle last-minute when I had already started bleeding - but for me, it is what worked. I was really incapable of knowing I was ready until that moment arrived, and if I had a lot of time to think about it, it would have just made me very anxious and agitated.

I also have the unusual luxury of an extremely accommodating and understanding RE who could make things work on very short notice. (I suspect he is also happy to have the opportunity to try to get me pregnant again before we leave for Toronto because I know our loss was the loss of a victory for him, too, and he is a really swell guy who certainly makes me feel like he has an investment in our outcome.)

Since losing Aminadav and Naava, I have had many days when I feel like never trying to get pregnant again, but underneath those doubts and dark feelings, is my belief that while nothing will ever fix what happened or my incredibly strong desire for them specifically, Y and I need a happier focus to our lives in the form of a living child.

I did think maybe it was a little bit overly eager to be returning to IVF and attempting to get pregnant again so soon after the twins died. I think that sometimes, still - that it is somehow disrespectful towards them to move forward with cycling so quickly. But mostly I see that a living child will connect me back to the twins - that the love I have for a living child and the mothering I have the opportunity to do for him or her will also allow me to mother the twins in the way I never got to and allow my love & appreciation for them to deepen even more.

It is incredibly scary and unnerving, as always, never knowing exactly what still lies ahead in our pursuit of a living child - the same, familiar wondering as before - whether we are very far or closer than we think. Except this time, it is tinged with the awful first-hand knowledge that you can get very very close and come back up with empty arms, having lost and gained so much. (It is always important to remember & acknowledge how much we gained.)

Feb 13, 2011

great expectations

The summer I was 17, I got my first lab job. I owe a lot to the principal investigator who was open-minded and altruistic enough to hire a high school student for the summer, and I can definitely say that the two summers I spent in his lab heavily influenced my choice to become a researcher and not go to medical school (gasp!).

One thing M. said to me before hiring me was that I needed to realize what doing molecular biology on a daily basis was all about - basically mixing miniscule amounts of things that look like water with other things that also look like water. He just wanted to make sure I had realistic expectations of what I just signed up for. He said, from his point of view, my happiness in lab that summer and perhaps with science in general, would be dictated in large part by the distance (or lack thereof) between my expectations and reality.

Many years later I still hold this little nugget of wisdom as a universal truth - the closer your expectations align with reality, the more content you are likely to be with your current situation. You can probably see where I am headed with this, but in no other experience in my life, has the distance between my expectations and reality been any further than in our quest to start a family.

A lot of my frustration (and even sadness) seems to stem from repeatedly, again and again, failing to meet my expectations, Y's expectations, the expectations of our families, and yes, even the expectations of our doctors when it comes to getting (and staying) pregnant. I am sure my story of chronic failure to meet these expectations is relatively common, especially among those of us who arrived here with no suspicious histories and no other warnings.

When we started TTC at 25 and 33 with no history of previous problems, young and healthy as they say (currently 27 and 35 and still young and healthy), we were both quite confident that within 6 months of well-timed intercourse, we'd be expecting. After one cycle, even two, it was still easy to believe that we were just swimmingly fertile but so far unlucky. After 6 months, the nagging, suffocating feeling that maybe we weren't like everyone else and this wasn't going to be so easy, set in. Still, I took great solace in all the women I met on TTC message boards who got pregnant after 8, 9, even 10 months of earnestly trying - if they got pregnant, so could I.

As a year began to close in on us, we knew that we wanted to do some initial testing. We left our first appointment with the RE feeling about as optimistic as we had the first month we started trying. While other people left their first RE appointments downtrodden and depressed, being told they were "officially infertile" and had a difficult road ahead, we left happy as clams and confident that our problems were something a few Clomid and a bottle of wine could easily fix. With our own expectations long quashed, our RE had great new expectations for us. He mapped out on a sheet of paper the number of couples with no previously diagnosed problem unable to conceive within a year. He told us that among women my age like myself, in his experience, 80% would get pregnant within a few Clomid+IUI and FSH+IUI cycles. It was only the straggling 20% who would ultimately need IVF to conceive.

And for a brief time, we did meet both our and someone else's expectations, when I got pregnant following my 2nd IUI. Again, after our first ultrasound, we were reassured that the chances of a miscarriage were quite low - we had expectations that we would keep this pregnancy. Of course those expectations went out the window, too, once we learned our baby didn't have a heartbeat a few weeks later. After that, the RE was quite confident we would be pregnant again in no time.

Needless to say we are on our 5th IUI and still nothing (and my implication certainly isn't that 5 IUIs are a lot in IF World, but rather that it again falls short of the expectations that were perhaps unfairly set for us personally). Oh, and that pesky myoma I was initially told not to worry about? Apparently I should be concerned enough now that it is not in fact subserosal and needs to likely come out in the next year.

Y gets exasperated by my perpetual "what-ifs", my constant need to always have some worst-case scenario tucked in the back of my head. I get exasperated by his unwavering optimism, his genuine belief that next cycle is always the one that is going to make our dreams come true. I believe that such unwavering optimism can be dangerous eventually, that it can blind you from the truth and keep you steadfastly devoted to a path that no longer logically makes sense (I do not believe that this is happening to us yet, but if we are still without baby or viable pregnancy in a year, I would be ready to consider adoption, whereas Y seems unable to even contemplate giving up our dream of a biological child, even if it means endlessly cycling like a hamster on a wheel).

I get so tired of constantly failing everyone's expectations. If at any point, someone could have looked me in the eye, whether it be my husband, my parents, my doctor...whomever and could have said to me that this is going to be very hard and we have no idea when it will end or what the resolution will be, maybe I would feel much better about the state of things. Then if I succeeded, I could think that I beat the odds, I could believe that this is my miracle baby, instead of every single time being reminded that once again I have failed miserably to meet the basic expectations set out by someone else.