The Secret History

I'm sure if you are a regular reader of infertility/adoption/pregnancy blogs, you will have seen the game of "tag" making the rounds- the rules of which are simply to go into your archive, find the 23rd post, find the fifth sentence and post the text here.

Well, I've been tagged at least twice (as far as I know). I should explain that I never usually play these sorts of games, mainly because I get so confused about the rules. I mean, are we talking the twenty-third post on my current blog, or on the old site- not that I have gone so far as to check if there is a difference.

Also, in offering a summation of the rules above, have I fully complied with the rules which state that I have to post the tag game instructions? What happens if I fail to follow the rules? Will I be sent to the corner with a big "L" for LOSER on my forehead?

You see, I am far too tedious to play with. I've always been like this. This was why I had no friends as a child, and sat alone in my room reading things like Noel Streatfeild's "Shoes" books and Anne of Green Gables.

Anyway, the tag game on this occasion segues nicely into something else I wanted to write about. So here it is, the fifth sentence of the twenty-third post, (current blog version):

"Given my pathlogical inability to buy envelopes and stamps, it may be a challenge for me to meet that deadline."

I recently disproved that statement by sending off, in a remarkably expedient fashion, for my medical notes for the IVF cycle, the day before we went on holiday. My incentive was that if at all possible, I wanted the records in my hand for when we got back so that we would immediately be good to go on a consult elsewhere. I know, excuse me while I stop typing to hold my sides from the aching, ironic laughter.

Given the number of times that my notes went missing during my treatment, I had figured it would take nine million years to actually extract the copies from the OC. Perhaps rather unfairly, I also thought perhaps they might be a wee bit, um, awkward about giving me the notes in a timeous fashion. I never did manage to quite confirm the deali-o as to whether there was a legal obligation to entitle me to copies- or if they would humour because I am so cute and mailed in my pee sample like a good girl.

But I figured that in any event, I would just cut to the chase and frame the letter in a way that it could also be taken as a request from both of us under the Freedom of Information Act. Because I am a clever bear that way. I had E. sign it as well, offered to pay any relevant fee for the copies, and mailed it off with nary a pathological twitch in sight.

Would you believe the envelope was waiting on the hallway floor when we got back from our trip? They copied the notes and mailed them the next day with a nice letter. It doesn't quite make up for the pee sample fandango, but was a pleasant surprise all the same.

It's a surprisingly thin sheaf of paper. A lot of the records comprised things I already knew- results of blood work, documentation of our communicable diseases tests, what medications I had been taking during the cycle, the number of embryos transferred. Not much by way of revelation.

One small new piece of information was the number of follicles at the final ultrasound, since I was spared clipboard duty that day. By my calculations (including factoring in another day of stims), I reckon I had approximately 14-16 follicles going into retrieval. I don't know what it means that we only got seven eggs out of that, and that only four were mature. I also still don't quite know what to make of the fact that the two embryos transferred were only four and five celled, respectively, and from what I can tell, all four were sluggish in the dish.

It's the last mystery that I find so particularly maddening. What happened there? Was it us or me- poor eggs or some other abnormality? Or is it simply that our embryonic efforts might have fared better in a better lab? Right now, that's the question I want answered- it's the main driver as to why I want to try again at a clinic with a reputation for a good lab.

It's so strange, to flick through those sheets of paper, looking for clues in the illegible scribbles, seeking the key to the riddle of our particular infertility tale. And it's odd to think that the pages reveal nothing of what for me is the real essence of the story- the heartbreaking treatment decisions, the hours of Googling for information, the huge investment of time, energy and money. Of the fragility of my trembling hope and the weight of my final despair.

To realise that the notes, factual and clinical, can never tell anyone about the things that mattered most- the things that I will forever carry with me as my own secret history.

Comments

[Toni]

I always wanted a button - somewhere hidden from others view, but visable to me - that would tell me what was wrong. "Hey, Tone, you're all stuffed up in the tubes" or "Yeah, idiot, the eggs didn't even release this time". Wouldn't that be cool.

I hope they come up with that (and give them a Nobel prize for sanity) very soon and you get to test it out.

If not, I hope someone will be able to figure it out for you.

[Emily]

I wish I knew. I do know that protocol can affect the outcome of your eggs by a great deal. I grilled my doctor and then grilled her some more about her reasons for why she is using each and every medication in my cycle and what her 'mental' picture of me is as a responder, i.e., is she going into this thinking that I am a poor responder and will be pleasantly surprised (or not); or is she just giving me the cookie cutter protocol and hoping for the best?

When we got our records from our previous clinic, including my husband's, my file came with about 20-30 pages and my husband's in a thin envelope with a piece of paper with just his name on it -- I kid you not. We're still laughing over this. It was a non issue since we had already done a recent SA and had those records and male factor is not our issue, but STILL -- I can't tell you how glad I am to be away from there.

Thinking of you my dear.

[mm]

I've had my records from my first cycle since it was cancelled (in Feb). I've been pouring over them ever since and I still can't make sense of what went wrong. What's even more frustrating is that none of the 3 REs I've seen have been able to, either. They keep saying, essentially, that shit happens and that a new lab, better monitoring, ICSI, and a slightly tweaked protocol can make all the difference. I so hope they're right and that the same hold true for you. I stayed in my room reading Anne of Green Gables, too. I'm such a loser that even built a whole trip around going to see LM Montgomery's house last summer. Dork. Dying to know which clinic you're thinking of going to (for some reason I'm assuming it's in the states)...

[Cathy]

Mare,

You might not think it, but this is a beautiful, beautiful post. Really.

The records not only tell you very little, but they certainly don't do justice to the process of IVF nor the heartbreak of when it doesn't come off as we all hope for ourselves and for each other -- as you said, the things that matter most.

I think we all deserve major monuments to be built in our names, a marble statue of women, vials, syringes, and computers.

I'm fading from the IVF blog world, but will be keeping you in my heart and will check in from time to time.

Cathy

[deannavs]

Hi there:

A friend recommended your blog to me and just reading a couple of your latest posts felt so, so familiar. I haven't done IVF, or started any infertility testing actually, because my husband shares a twin heart with yours. I swear.....your entries about IF denial were like quoting his speeches to me since we hit one year of TTC in January (miserable, nerve-crunching TTC.) I'm glad I found your blog, and I really hope neither of us has to go on pretending that 2 years of TTC isn't evidence of a problem that is OVERDUE for the solving.

[PJ]

I think we'd all be surprised to see what our medical charts say about us. For instance, the first thing in my chart says that I'm overweight. Initially, I found it funny, but now that I've had more time to think about it, it's rather sad.

All about us in a few sentences, but it barely scratches the surface.

[Alexa]

So well said, Mare. Really. I wish some of that information about the toll IF takes were in our medical records, so the Doctor planning treatment could see it, and maybe understand a bit better what is at stake.

[Anna H.]

Yeah, if there was some sort of emotional/psychic blacklight that we could shine on our charts, you would be able to see their fiery glow from space.

It's awful that so many of the people around us are oblivious to the emotional toll of IF. But your blog has charted so much of what your heart and mind have gone through these past years -- you have shared so much with all of us. And when you reveal bits of your secret history here, it reminds us that we are not alone, that we're not invisible.

Thank you for that.

xxoo

[Mellie]

Anna H. wrote beautifully about what I'm sure we all must feel when reading your blog, Mare. I completely understand and relate to wanting answers and looking everywhere, desperately, for them. For me, that's the hardest thing about my IF - there's no bloody reason for it. While rationally I know that knowing what the problem is doesn't mean there is a solution, emotionally I think it would make it easier.

I'm glad the OC was at least easy to deal with in getting you the records. Now, maybe, you can talk to other REs/clinics and find the answer to your question.

[DD]

Reading through your own chart can either bring closure or a catalyst to more questions starting with "Why..." You have to find a professional who is willing to fill in the blanks. You are paying them for more than making notes in your charts and the up-close-and-personal exams, they owe you as much. I hope you can find that person WHEN you and E are ready, not "IF".