Tuesday, April 20, 2010

Given your history


It's a strange phrase I've heard from my doctors - first in relation to my cancer diagnosis, and now in reference to our infertility struggles.

What does it mean, "given your history"? Well, I've learned that it usually means a pessimistic prediction is about to follow.

For instance, a couple of years after being declared in remission from Hodgkin's lymphoma, I felt a small lump in my right breast. Not irregularly shaped, or too hard, or matted into the tissue (things I knew from my go round with lymphoma were baaaad), but definitely there. I had an ultrasound, and the mass was solid, not fluid filled (so not a cyst). The doctor looked at the ultrasound and felt the small lump and said something like, "Well, in a woman under 30, we wouldn't really think much of this - it's almost certainly a fibroadenoma (translation: totally benign) - and we would probably just watch it over the course of the next several months...but given your history, I think we should do a biopsy."

Which was negative, thankfully.

But examples like this began to occur repeatedly. And at first, I was grateful for the careful medical attention. After all, I had lost trust in my body's ability to work properly, too. But over time, I learned to not go to the doctor and report a symptom unless I wanted something invasive done, because "given your history" translated in practical terms to something like, "You were really unlucky once...and so now we have a higher index of suspicion over ever cough, ache, and fever just in case it's another unlucky (and unlikely) event."

And knock on wood, in more than 10 years, nothing else has turned up. And my "history" has faded into the background...not a big deal anymore, but just something mentioned in my medical history and then tucked back again where it belongs - in the past.

Flash forward to infertility and it's been almost the opposite battle.

I had a bad feeling about our reproductive chances from the get go, which is kind of funny (also kind of sad) in hindsight. We actually saw an RE before we even got married to get a reproductive workup, because I was so concerned. Based on what? Gosh, nothing really, except maybe what you would call a (not yet) mother's intuition. And the RE gave us the all clear. Everything looked great. Go out and have unprotected sex. And well...you can see where this has gotten us.

As our infertility losses have accumulated, we've heard repeatedly that each miscarriage is just bad luck and our likelihood of it repeating very low.

This was comforting to hear after miscarriage #1. It was significantly less comforting to hear after miscarriage #2. Then somewhat puzzling to hear it again after miscarriage #3. By miscarriage #4, hearing that we wouldn't miscarry again was irritating. And by miscarriage #5, it was downright infuriating.

It seemed that in infertility, our lack of a history meant that the physicians were not able to imagine we could fall outside of the population statistics. For most women my age, a miscarriage is not a repetitive event. A live baby is around the corner.

So it is only now after three years of grief, we are beginning to hear the words "Well, given your history..."

And I find myself wanting to half laugh, half cry. I've been trying to get this situation assessed for what I've thought it was for quite a while now, and only NOW are the doctors also beginning to see a pattern?

It's a funny thing, this lens that medical providers see you through. A lens colored by your personal health bad luck or a lens filtered by population statistics. Either one may have a lot - or very little - to do with the actual truth of the matter.

Same as my own lenses on the situation, I guess, which are sometimes colored mostly by my fears about a bad outcome and on another day, filtered by my hope, my drive to see this through and out the other side to a child in our arms.

It will be a glorious thing when "our history" becomes just that, something we've moved on from. Something we can look back on from afar and say, Remember how hard and unending those days seemed! So wonderful it is to be out the other side! It will be a wonderful thing when we can have our infertility history tucked where it belongs - a thing of the past that we have overcome.

Mo

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11 comments:

  1. I look forward to that day too. I honestly wonder, will it ever get here? Will I ever live in that future?

    I hope we both get that future, and soon!

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  2. Not to draw too close a comparison, but I'm kind of on the upward slope of this.

    I'm 30, DH 32, all tests are 'textbook'. So when we went for our IVF consult after 2 years of trying & two failed IUIs we were told "no sweat" "you'll have a great response" and "we always grow to day 5".

    Fast forward to our first cycle where we had 14 retrieved, 9 fertilized, and on day 3, had 3 that were just barely limping along. "I'd be much more pessimistic if you were older" said my doc. Well, great! Any reason WHY our embies are so crappy ("no") and we thought we'd grow to day 5 ("nothing left")

    Anyway, I am tentatively, hopefully, pregnant with slightly low (but quickly doubling) betas.

    Still though, I wonder what this means for us in a couple years when we hopefully try for #2. Will there be anything left? Why if we are 'textbook' do they have nothing to say about our poor response and quality?

    It is the most infuriating thing. I feel a tenth of your pain

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  3. I could have written portions of this blog entry myself. My DH and I saw our first RE two weeks after our honeymoon, thinking that she would just give us a limited time to TTC naturally. Instead we were rushed into two IUIs and one IVF with nothing to show for it except a decreased bank account and a lot of unfulfilled wishes. It really helped me to see how far we've come on our journey this past weekend when I had to explain to my BFF (mother of three beautiful children) what an OPK is. Gone are the days of being a vagcam virgin, of not having the knowledge to mix meds and inject them into my belly, of thinking that having sex is going to lead us to a baby. I waffle between feeling scared to death of more disappointment and feeling optimistic about our chances at CCRM. And I too wonder if we will conquer infertility. I want so badly to hope that we will, but part of me is terrified to let those feelings out.

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  4. I hope that this day comes for you soon! I read your blog regularly and I wish you the BEST!

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  5. Hi Mo, yes I get why that phrase is doubly painful for you to hear. Am stuck in Oz so forgive me if you've already covered it but are you closer to a decision as to whether to cycle again? To give you my two cents worth, I really do understand how difficult it us to contemplate going again (cycled 3 times at CCRM last year from out of country, all of which were banking MA cycles, the first of which yielded 3 normals, the second and third of which yielded nada). That said I feel you have the finishing line in sight. Do you have one cycle left in you? If you think you can possibly bear it, then I would go again - to give you the best chance, for sibling purposes and for the other reasons you have outlined. Again forgive me if your thinking is elsewhere on this. Wishing you the best possible outcome whatever you decide

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  6. While on the one hand it must be nice to FINALLY have some validation of what you have felt/ feared/ perceived for some time, I'm sorry that it has come at such a cost.

    I find that MDs are so loathe to predict/ assume/ make judgements that sometimes they need a whole lot of data before they are willing to even entertain a hypothesis of what the problem is, and in fact prefer to believe that there is no problem.

    Anyway, I hope your history is one day (soon) far far in the distance. Good luck with all of your decisionmaking.

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  7. I hate being in that place, where they just don't know what to say anymore. I was told we'd be a shoo-in with DE, and now we're looking at IVF #5 - I didn't even TRY with my own eggs because the RE said it would be a waste of time. Wonder what he thinks the past 3 years have been...

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  8. As difficult as this journey has been for me the past 3 years, I am comforted to know that I am not alone in feeling so up and down - from hopeful to feeling like it will never happen for us.

    I am also looking forward to the day when I can look back at this time (whether or not we are successful with this goal, but hopefully being successful) and feel that I'm in a better place.

    I am hoping that we all achieve our goal of holding our baby in our arms, one day soon!

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  9. I hear ya. We've also been told several times that the chance of having another miscarriage is low. (We've had 5, too.)

    I even consulted with one RE who decided to take the sports metaphor approach and told me all those miscarriages are just "foul balls", and then proceeded to say that they gave him hope! (I guess because they show that at least we can get pregnant. But I can guarantee if it was his wife who had endured 5 miscarriages, he wouldn't have been uttering such nonsense.)

    OTOH, there's my OB, who every time I go in to see him feels compelled to tell me about a patient of his who had something like 6 miscarriages, 1 baby, 5 more miscarraiges, another baby. I get that the gist of it is "have hope", but it's still not nearly as encouraging as he seems to think it is...

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  10. You couldn't have said this better:

    It will be a glorious thing when "our history" becomes just that, something we've moved on from. Something we can look back on from afar and say, Remember how hard and unending those days seemed! So wonderful it is to be out the other side!

    You will get there and we will all celebrate with you!

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  11. You worded this perfectly Mo. Just the words I was feeling myself and I know you must be tired of living on the edge of your life. I too can't wait till IF is behind me in my history (will it ever leave us completely though?) so I can start actively participating in my own life. You have come a long way though Mo and I do believe you are making progress. I'm a complete believer in persistance paying off in the end so I hope your dream of being a mother is closer than you think. x

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