We agreed that 50's too high. The 50% chance of a recurrence of HELLP, the 50% chance of an extremely premature baby — too high, too foolish to try. I asked Paul what number would make sense. "5%," he answered promptly. "Five is easy, just like 50. 20 would be harder."
And it is.
I'd waited 40 minutes for the doctor to enter, so I had a lot of time to plan my ambush (and to open the biohazard wastebasket and peer curiously within; and to take my own blood pressure several times on each limb, carefully computing an average; and to stack the moist towelettes in the bathroom in alphabetical order according to lot number). No sooner were the hellos said and my chart heaved laboriously onto the desk than I pounced, and asked the question.
20%, the doctor said, when asked what our chances were for another birth before 34 weeks. 20% chance of HELLP or pre-eclampsia again.
Those numbers pertain to treatment with Lovenox, low molecular-weight heparin, an anticoagulant that reduces the chance of troublesome clotting. She talked a bit about the drug; because of its expense, she pulls it out only for patients who really need it, "classic cases like you." (I sat there feeling suddenly all classic and shit, trying to seem refined, a difficult pose to assume when you've just entertained yourself by repeatedly blowing up a latex glove and then letting it go pffffft as you release the air.)
She told me that Factor V Leiden is quite definitely associated with HELLP, and was obviously implicated in the placental infarction that was found after birth. With Lovenox, she said, the chances of a blood clot during pregnancy were not zero, but "extreeeeeeemely low" (extra Es hers). With two daily injections, our chance of a successful, relatively uneventful pregnancy was "very good, the most likely outcome by far." Because Lovenox is so effective a treatment, the only additional monitoring I would be subject to would be non-stress tests beginning earlier and taking place more frequently, and of course my own increased vigilance.
I asked about my risk for a repeat placenta previa, expecting her to wave the idea away, but in fact she did not. She placed my chance at 10%, based on the several risk factors that now apply — had it before, prior C-section, prior D&Cs, IVF, and, now, somewhat advanced maternal age. She looked a little grave when I asked her what happens if I have placenta previa, which usually means bleeding, while on Lovenox. "It's a balancing act," she said, explaining that we would then adjust my dose of Lovenox to the lowest possible level, and then hope for the best.
Hope for the best.
She went on to warn me that my risk for placenta accreta, in which the placenta digs way into the wall of the uterus or even beyond, is now elevated, too. Therefore my chance of needing a hysterectomy at delivery is greater as well. (This did not upset me as it might have; once I've finished using it, I would not be sorry to kiss that uppity bastard goodbye.)
Once my uterus was summarily dispensed with, we talked about IVF. She confirmed that I should be on a prophylactic dose of Lovenox during a cycle, with a therapeutic dose to commence upon a positive pregnancy test. I asked, though I already knew the answer, whether having multiples would increase my risk of...well, everything. To bring her out of the dead faint she fell into at the very notion, I broke an amp of ammonia under her nose, then assured her that multiples were the least of our concerns with IVF.
We talked some about risks beyond the immediate postpartum period. Pregnancy itself, she said, puts me at greater risk for a clotting problem, but once the pregnancy is over, and once I've finished a 4 to 6-week course of anticoagulant therapy after delivery, there are no additional implications for my health. Speaking only in terms of clotting, and therefore barring, say, the liver or kidney damage that can occur with HELLP or pre-eclampsia, I need not worry about whether a pregnancy would compromise my health overall.
And I asked her what her greatest medical concern would be if I were to conceive and become her patient. "Multiples," she said promptly, but rallied when I told her I was comfortable mediating that risk. (Our difference in position and perspective was obvious: she was talking selective reduction while I was talking single-embryo transfer.) Her other great concern was previa, a risk we cannot mediate. There's nothing to be done for that, and by the time you know it's a problem for sure, it's simply too late to punch out.
It's just like anything else. When you're just beginning fertility treatment, Clomid and inseminations, you fear you'll never have a child. But once you've been flattened by a few IVF failures, that fear congeals into something harder and colder. When you've never miscarried, you're scared that you might. But once you have miscarried and get pregnant again, you think, Ohhhh. Scared of miscarrying. Gotcha. And, okay, because of placenta previa, I did worry about a premature delivery before I had Charlie. But I know better now what I'm scared of.
We think we know what hurts, and then something worse hurts more.
I was sitting on the exam table looking at the pain scale hanging on the wall — you know, the one with the faces — thinking about this. If you'd asked me before our first IVF what possible outcomes I expected, I'd have drawn you something like this:
Sure, I knew the statistics for miscarriage, but I also knew that it was more likely our cycle would fail, as 57% did that year for my age group, than that I'd get pregnant but lose it. It all seemed pretty straightforward, downright binary. We'd win or we'd lose.
And we lost. On our second cycle, I knew a lot more about what could go wrong. Based on my experience, my appreciation for the subtleties was a bit keener.
I'd thought I knew how it would hurt. But my scale should have gone to 11.
Still, I was getting better at this. After some careful recalibration, I was ready to take on our third IVF cycle with a scale that would address any eventuality:
I was pretty sure a drawn-out miscarriage would just about do me in. Fortunately, it never got that far. Unfortunately, I failed to predict the need for a smiley face to represent the frightening possibility of never — not just on this cycle, but ever — carrying a child genetically related to me.
By our fourth IVF, I had no more zero; enough had happened that "no hurt" wasn't an option. Having a baby was still the best possible outcome, of course, but all of the other possibilities seemed, at that point, equal: a loss or a negative would have meant adoption or donor egg. Those were options I could live with, if not immediately feel excited about.
And, you know, I was mostly right. Baby of any description — known to his familiars as Charlie — has made me a solid two, most days trending to one. I am happy. It's not the unfettered happiness of zero, the kind of joy you can feel before anything really bad has happened, but rather the relieved contentment of knowing you've weathered a ten and are little the worse for wear.
"Hurts little bit" indeed.
So I sat there thinking of Charlie, thinking of two, wondering whether I can stand to risk it, and trying to imagine what the scale would look like if we tried again. It came out looking a little like this:
I know what the best possible outcome is; even that, though, comes at a price. And I know what the worst is, unlikely though it be. (Paul wouldn't be caught dead in a hat with a veil, no matter how fervently I might wish it.) It's what happens in the middle that feels so fuzzy. Short of the worst, what's the worst that could happen? What would hurt most? How would I cope?
I simply can't say, and it's pointless to try. What makes the exercise pointless is also what makes it so scary: You don't ever get to pick.
It's hard to know what to do with this information. I am trying to keep it in perspective by reminding myself that I was actually at greater risk while I was pregnant with Charlie. After all, the same conditions applied then; we just didn't know about them. And because we didn't know about them, we couldn't treat them. We didn't know we should be on alert. I didn't think a stomach ache could be such a big goddamn deal.
Now that we know and can treat the problem, my odds of having a successful pregnancy are much greater. It is true that I'm at risk again for severe pre-eclampsia, but it's also true that if it develops in subsequent pregnancies, it tends to happen later, although this is not a hard and fast rule. It's true that I will probably have gestational diabetes again, but I've been advised to get my blood sugar stable before even trying to conceive, so that will be taken in hand. About possible placental implantation problems, we can do nothing — I'll be far too busy counting every last grain of brown rice to devote any energy to moving that messy old thing.
We're better equipped now to deal with the consequences, and therefore more likely to have a good outcome — in fact, a better outcome, a later birth, a healthier mother and child.
20%. Sure, I'm scared now. I should have been then, too. I just didn't know it yet.
And that was the cycle where you gave birth to a flock of snow white doves, right?
Ten minutes in, I was cackling. I sounded hysterical, felt that way, too. "I'm sorry," I apologized. "This is all just so absurd."
We'd been playing a lively guessing game: my doctor was summarizing my reproductive career without consulting my file, and I was cheerfully correcting him as we went.
"And then we transferred three," he said, nodding in remembrance.
"Mmmm, no," I said, enjoying this hugely.
"Really?" he asked, starting to rifle through my file. "I would swear we..."
That's when I started laughing. "I've never made three," I said, and cackled.
It is absurd, all of it. I have an encyclopedic, obsessive knowledge of my own medical history; my doctor had my file open on his lap; and yet we were still playing this ridiculous game of Go Fish. ("And that was the cycle you got pregnant with that adorable litter of playful but cross-eyed Siamese kittens!" "Uh, nooooo..." "Are you sure? Because I thought...")
Absurd, because despite what you might think, given my three pregnancies, I am terrible at IVF, barely squeaking by each cycle; but there I was, talking protocol at my local clinic.
And also because I am not good at pregnancy. But here I am again, hoping, ready, asking, "Please, sir, may I have another?"
You can laugh. It's okay. It's funny.
I'm laughing — yes, at the absurdity of it all, because about a year ago I was pretty sure it would never come to this. But also because I'm delighted. I'm thrilled to know what I want, to have a plan, to be in a position to try. Still pragmatic, because I'm not, you know, stupid, but also optimistic that there is a chance — just — that we could, if we are extremely lucky, eventually succeed in having another child.
So. We talked protocol, we talked dates, and we did a cursory physical exam. ("Oh, how I've missed this," I sighed, as the speculum slid home.) My doctor deployed his stethoscope, and remarked with some satisfaction that my calm composure must be a front, because my heart was racketing along at about 120 beats per minute.
Can't fool the guy with the scope. Can't fool myself, either: no matter how I try to caution myself that this cycle might fail, that a pregnancy might fail, that my body might fail in the end, my palms get moist and my heart beats hard and I smile when I think about it.
I'm excited, and hoping, and laughing.
Caroline Lake Quiner was born in 1839 in Brookfield, Wisconsin on what we may safely assume was a cold day in December. At age 16, she became a schoolteacher, just as one of her daughters would, and married a neighboring farmer's son when she was 20. One of seven children herself, she eventually bore five children. (Presumably there were no fertility problems in that branch of the family.)
One of her children would later make her famous. Laura Ingalls Wilder, daughter of Caroline and Charles Ingalls, would characterize Ma in her Little House series as cheerful, kind, hard-working and warm.
I couldn't help but think of Caroline as I faced our new doctor across her desk last week. She was all of those things, heavy on the warm, to the point of making me vaguely uneasy, the sort of person who asks, "Isn't that nice?" and then waits for an answer. "You've been through so much," she crooned, folding her hands on top of my file, the one I'd neatly organized and ruthlessly abridged so as not to exceed the airline's baggage weight restrictions. "I'm proud of you."
Now what is the connection? It is not that the doctor, an attractive and maternal-looking blonde, bore more than a passing resemblance to actress Karen Grassle, who brought Caroline Ingalls to television life. It is that I detected in our doctor an implacable Midwestern niceness, an almost aggressive pleasantness, so strong and obvious an urge to be accommodating that I felt irredeemably rude for declining the water, tea, and coffee she offered...twice.
I am talking about Minnesota nice. And although Laura Ingalls Wilder spent only a scant handful of years there, I strongly associate her with Minnesota. The way Michael Landon told it every Monday night on NBC, her family's stay in Walnut Grove lasted decades. Of course, the way Michael Landon told it, Walnut Grove was actually located just outside Los Angeles; a teenage Laura wore Cover Girl and probably Love's Baby Soft (and, by the way, hubba hubba, Half-Pint); Charles and Caroline adopted a moppety Shannen Doherty, sadly unaware of the monster she would become; and weird rapist mimes slunk around the prairie attacking anything in a pinafore. What can I say? Those were impressionable years.
But back to Minnesota, Land of 10,000 Lakes, the North Star State, and the Gopher State. That is where we'll be doing our next cycle. And because for me, Minnesota stands for only a handful of wildly disparate things — Julia, Spam, Mary Richards, and the Ingalls clan — when faced with the soft voice, almost stubborn kindness, tidy shirtwaist, and frontier can-do-ism of our new doctor, I could only think of Caroline.
Which made the subsequent sonohystogram uncomfortable. It wasn't just because of the cramping, although, Lordy, the cramping — you'd think someone had just shoved a catheter past my hermetically sealed cervix and filled my uterus with frosty cold saline or something. What was more uncomfortable was the cognitive dissonance inherent in the procedure. It was like nothing so much as getting fisted by Ma.
I'd prepared a top-line summary for the doctor to help her make sense of my file. For each cycle, I included the demoralizing facts: kind of suppression, type and amount of gonadotropins, peak E2, and, if the cycle got that far, number of eggs retrieved, fertilization, grade and number of embryos transferred, and eventual outcome (bad, bad, nothing, good, sucked, sucked, suuuuuucked). Seven cycles' worth, bullet pointed, bold-faced, really fucking grim.
I watched her face as she read it. Her expression went from puzzlement — "But it looks like you responded just fine on your first cycle. I don't understand what..." — to a look of kindly condolence by the time she got to the end. "Well," she said softly, then paused. Then, "You should feel good. You've really tried everything. So good for you."
And then waited for an answer. Well, hey, yes, I guess: good for us.
Here is how nice Minnesotans are, how serious about making sure that everyone is accommodated but no one is uncomfortable: Paul reports that in the, 'ow you say, wankatorium, the porn was concealed in a folder bearing a label that read,
Contains sexually explicit material
Next time I'll tell you about the social worker. I promise there's a payoff. Meanwhile, will you tell me what's in your clinic's, er, gentlemen's enclave?
Coffee, no sugar, dollop of low-fat milt
Back to the caffeine for just a moment. What? Only half a cup? They always used to like my coffee...
I spent most of yesterday morning crafting a masterly summation of the study I mentioned last week. Then I belatedly read the link kindly provided in my comments by Sandy. I found this to be the most piquant part:
The public understandably believed that this new study must, indeed, be important since almost no medical professionals were heard contradicting the news reports.
But, there is a reason why:
Because the study had not yet been published in the medical journal or been made available to medical professionals. Anyone who might critique the study hadn’t seen it. It was released to the media before doctors and medical professionals with paid subscriptions had even had a chance to read it!
Gosh, no wonder so many of you wrote to say you couldn't track down the article.
That post raised enough questions in my mind that I crumpled up my own masterly summation and added it to the compost with the morning's clumpy grounds. Look, I'm not a scientist. In fact, I am so not a scientist that I am too embarrassed to ask Paul, who is, whether I drain my iPod's battery faster by listening to it loud. (I was not too embarrassed to ask him why radio reception is worse when it rains, and that should tell you something right there.) So you would probably do better to read the study (PDF) yourself, talk to a real live doctor about it, and form your own conclusions. Because at this point I'm not touching this one with a ten-foot one tablespoon scoop.
I am, however, currently enjoying my customary morning latte, but a single instead of a double. Make of that what you will.
A tip of the portafilter to Sandy at Junkfood Science; another Sandy who pointed me there; and Jen, Cindy, Jeanette, Maureen, and PRC, who went on a helpful paper chase.
Yesterday I had the opportunity to ask a real live doctor myself about caffeine, but I didn't take it. I was too busy learning how to dose myself with insulin. ("So you take one of these teeny syringes..." "Yeah, I think I have this part covered." "Then you take the alcohol swab..." "Wait, you take the what, now?")
I knew it was likely that I'd end up on insulin sooner or later, as insulin resistance tends to increase in gestational diabetics as a pregnancy advances. I did not expect that it would be so soon, but after ten days on the standard diet, my doctor took one look at my postprandial blood glucose numbers and said, "Wow! You failed these good," then reached for her prescription pad. I am mildly concerned, because I know from our experience with Charlie that infant RDS, which can be exacerbated by diabetes in pregnancy, is no trivial matter. But of all my past complications that may recur, this was the most likely, and is happily the most manageable. So I am perfectly comfortable managing it.
That said, it was not without alarm that I read up on the kind of insulin I've been prescribed, a long-acting variety called NPH. Now, it used to be that insulin came solely from animal sources — to be precise, cow or pig pancreas. (What a selfless, noble animal, that medically minded pig.) But apparently there have since been advances. Through the use of recombinant DNA, insulin can now be synthesized to be virtually indistinguishable in effect from human insulin. As I mentioned above, I'm no scientist, so I'm not sure exactly how this is done — genetic engineering, nanobots, or big pharma's secret shame: enormous slave colonies of leaf-cutter ants — but it turns out that the brand I was given is made using Escherichia coli.
Wait, it gets better. What makes NPH long-acting? Why, it's "the addition of protamine obtained from the milt or semen of river trout."
Pig juice, E. coli, and fish spunk. Strange, all of a sudden I'm not so hungry for my mandatory mid-morning snack.
Being somewhat securely with child, I have posted my last at REDBOOK's Infertility Diaries. If you know of a blogger whose story you'd like to read there, why not go on over and throw her name into the ballot box? Thanks. I'll buy you a cup of coffee next time I see you. (And then lunge across the table to knock that steaming cup of certain fetal death out of your trembling hand. God, what are you, crazy?)
Open mouth, insert speculum...I mean foot
When you get right down to it I do feel a little bit sorry for my doctors. They've been nice people, all of them, well intentioned and caring, but let any one of them utter a single phrase that is less than exquisitely calibrated and I go all lucha libre on their competent white-coated asses.
But only in my head. In person, I am almost faultlessly courteous. (I only add "almost" because I know I've allowed myself the odd impolite guffaw here and there. It's usually been immediately after I've been asked if I'm aware of the risk of high-order multiples, or prodded for a decision about how to handle any leftover embryos. I excuse myself this lapse in manners only because I think those doctors have been in on the joke, having seen my ovaries in action. Uh, in inaction.)
Lovely people, all. If they have occasionally made a gaffe, it has usually been a mild one, kindly meant and easily forgiven. (Usually. I make an exception for the doctor I'd asked for birth control pills, who actually leaned in close and whispered, swear to God, "Just in case, or is there someone whispering in your ear?") Some of them have even been people I think I'd have liked to be friends with, like the long-ago gynecologist who looked at my piercings, regretfully told me I'd have to remove them for my laparoscopy, and then reminisced wistfully about her college days, when she'd had a mohawk and a lip ring.
Believe me, I recognize my great good luck in this and appreciate it, especially having heard some real lulus from some real bozos. A friend inside the computer pointed out Radar's "Gynecologists Say the Darnedest Things," a list of some of the creepiest things their readers have heard from a professional head tucked between their thighs. And indeed some of them are weird. But in my opinion they're nowhere near as cringeworthy as what a doctor, male, said to a friend of mine just before injecting the dye during her HSG: "Let's see if your insides are as pretty as your outside."
The comments at Jezebel about the Radar story are every bit as unsettling and, in places, hilarious: "My doctor once shouted, 'Wow, you are LUCKY! You're really tilted but in a good way. He must not have to work very hard at all!'" "I mentioned my mother was a dentist. The gyno looks up from between my legs with a disgusted look on her face and says: 'You know, I could never do that. Looking into people's filthy mouths all day long...Ugh!'" "Mine always tells me to say hi to my dad. Yeah. Awkward." "The weirdest thing I've had happen after I had an exam was for the doctor to pat me afterwards, right on my mons pubis. Like he was patting a puppy. A cute vagina puppy."
Now I happen to think that given the, ah, emotionally charged nature of fertility treatment, plenty of you must have heard funnier, creepier, or both. Feel like sharing? If it makes you feel more relaxed, imagine me complimenting the sweet ballerina pink of your cervix as you type.
I LOVE JUSTINE ELIAS for the link.