In case you haven’t gotten the memo, this will officially be the last post at this address (notwhenbutif.wordpress.com). Please check out my new site at notwhenbutif.com, and update your settings if necessary as described in this post.
Errr, scratch that last post
Apparently when a man leaves a frantic rambling message on fertility clinic’s after hours line it attracts someone’s attention.
Mr. But IF returned to his office after lunch, called, and about 30 seconds later my own office phone started ringing. Turns out surro-phlebotomist or someone of her vampiric ilk dropped the ball and the results never made it from hospital lab to fertility clinic. A quick call to the hospital later, and the nurse had my answers. Beta is 10.
This still doesn’t meet my clinic’s (ridiculous if you ask me) definition of “not pregnant,” but, I’m not pregnant. They wanted another redraw on Saturday, but I have my laparoscopy post-op appointment on Tuesday already scheduled so I asked to just defer until then. They agreed.
So, that’s all folks. My gallant nearly 4-year attempt at getting pregnant by having sex with my husband died today. Next stop, laparoscopy part deux. Arriving at the operating theater near me on August 20.
If you’re looking for an update…
… you’re not going to get one.
Had my beta drawn at the local lab at 7:45am this morning. Drawn by a phlebotomist-in-training. A phlebotomist-in-training that was being trained by “I’ll be your surro!” gal. I was introduced as a frequent flier, and also used to teach vampire-in-training what to do with used sharps containers. It was a laugh a minute. “I’ll be your surro” was genuinely sad when I told her I most likely wouldn’t be seeing her again until October at the earliest. She pouted as she asked, “But why?” I was feeling vindictive, so replied, “If you have $15K you want to give me for our next attempt I’ll come back sooner!” She stopped talking then. The silence was beautiful.
On Monday, the night before beta #1, I was so anxious I couldn’t sleep. I had such trouble sleeping that I overslept and didn’t get to the lab until about 8am. Then I got stuck behind poor little old confused woman that had come a week early for her pre-op and was jamming up the works at outpatient admitting. Blood didn’t leave my veins until 9am. I got the call from the clinic with my beta of 38 at 11:15.
Having gone much earlier this time around, I was hopeful for an earlier call. I waited. A computer went down at work and I couldn’t fix the connectivity issue. I cried like a baby. (If our IT doesn’t stop fucking around with network I swear they will receive the full brunt of my next Lupron crazy attack.) Then, after submitting ticket that basically said, “Stop fucking with our network!” I resumed my waiting.
One nice thing about working at the same university as Mr. But IF is that we generally have lunch together. Today was no different. When noon rolled around, we met at our usual spot, and I had my phone and list of WTF questions for the nurse on the table and at the ready. I was sure she would call just as I took that first juicy bite of my apple. But, I’m no n00b. Even after the father and his prospective student daughter sat down right the fuck next to us I knew I’d still gladly shout over the din in the cafe to ask questions about my progesterone levels, inquire about cycle package costs, ask when to start my birth control, and demand a consult to discuss future protocols rather than just continuing to do them on the fly. It’s then when I realized something. Something that was about to turn Mr. But IF into a stammering pile of bright red German anger.
It’s Thursday. The clinic closes early on Thursday. In fact, the clinic closed 10 minutes ago.
Guess I’m not getting my beta results after all. Given the one line pee stick I got this morning, I decided to celebrate being royally fucked over yet again with a giant cup of coffee. I might follow it up tonight with a giant pint (pints?) of beer. I have no hope, I’m just sad that Mr. But IF did. And, just upset that he’s upset. I lost all faith in humanity and the kindness of infertility clinics long ago. Against better judgement, he seems to have retained some. I hate being right all the time.
I hate what infertility’s made me
I’ve debated long and hard about writing this post. That logical side of my brain tells me that I’ll regret it later, that emotional side of my brain tells me I’ll feel better once I write it. Sensibility says there’s no way this post can come out right, that it can never hope to convey the range of emotions, thoughts, and questions flowing through my mind and body. Practicality says this blog was created to document it all, and there’s no point in maintaining that mission statement if I’m going to hide in the corner and cry when things get really, truly difficult. I don’t know whether this is just another narcissistic call for attention, or a positive step I need to take toward healing. All I know is I’m writing. And, at least the act of writing slows the endless flow of tears.
I’m hiding in my bedroom right now. I cried through the night and knew working today would be unbearable. Now, as I sit here, I’m finding being stuck in my house unbearable. Seems I can’t win. There are contractors working in our basement; Mr. But IF told them I’m home from work “sick.” Truth is I’m home from work heartbroken and crying into a pillow to soften the sounds of the whimpering. I hate what infertility has made me.
When deciding to call out this morning, I also accepted I’d be unable to make our usual Wednesday night trivia game. It’s a small town. Half my co-workers would be there watching me contentedly answering quiz questions, after being conspicuously absent from my incredibly demanding job. I’m frustrated to lose that one social outlet of the week where I get to just be me, but am reminded how even that relaxing night has plagued me lately. How recent competing trivia team names like, “Better late than pregnant” and “My sperm count is” stung. How last week’s theme of the royal birth was nearly unbearable. How one well-intentioned friend – single, alone, and still hoping for a family “some day” at age 35 – always grills me for advice on her own fertility, incessantly discusses that Atlantic article, and naively celebrates how easy adoption will be for her as a well-off African American woman. I hate that infertility has infested every moment of my life, removing the fun from a game of trivia and the relaxation from a post-game beer (or, as the case may be, seltzer).
Another home pregnancy test this morning showed a much lighter second line than the one I saw yesterday. Looks like my clinic may have finally gotten something right for once. That beta of 38 was almost surely just residual HCG from Sunday night’s booster. As I type this my right arm is throbbing. I’m afraid the blood draw site from yesterday may be mildly infected. It’s swollen, it stings, it’s not the first time. The sore draw site, my Lovenox bruises, the heating pad I’m sitting on on the last day of July to ease the pain of the PIO lumps – they are all physical reminders of the science experiment my body’s become. I hate how infertility has left so many physical scars, so many indelible reminders of my inability to do what comes naturally and effortlessly to so many others.
With my husband at work, trivia night cancelled, and sobs so hard I couldn’t even begin to call my “never lose hope/why are you injecting yourself with all that poison?” aunt if I wanted to, I’ve turned to my rocks, my dearest friends in the computer, my LFPers (don’t try to puzzle it out, you won’t get it). I’ve been making an endless barrage of teary, “woe is me” Facebook updates today. Well, this week, really. As one welcomes home her lovely baby girl, one learned the gender of her second, one sits in a hospital waiting for the delivery of her high-risk twins. All these moments to celebrate and to rejoice, and here I sit crying and alone. Wailing out (if only in type) for help and hope to these strangers that are so dear to me, and receiving support in spades in return. But, I hate that infertility has stolen much of my joy for them, and replaced it with this whining, desperate person that bears no resemblance to who I once was. I hate that I don’t recognize myself through the words that I type, and that change has resulted from infertility.
As I hide in my bedroom I stare at the paintings, the photographs, and the furniture that surround me. The two landscapes painted by my mother when she was slightly younger than me. The collage picture frame that contains a photo of the fledgling But IF’s on one of their first dates and my mom and dad experiencing the same in their finest 70s attire. The cherry wood furniture my mother bought me one happy Christmas long ago. It reminds me of the mother I lost, and makes me realize how much harder it’s become to live this life without her. I hate that infertility has made her absence more raw, brought that pain all crashing back, well over a decade since I initially lost her.
After returning to bed this morning to commence my teary day of solitude, I heard from Barb Collura about the final results from the Hope Award voting. My blog was not selected. And, I hate that that hurt as much as it did. That I couldn’t just be supremely proud to have even been nominated. That the knee jerk reaction was, “Well, here’s another thing I’ve failed at.” None of those responses are like me. Anger at my situation, at doctors, at insurance providers, at inane comments, yes, but anger at failing to win a popular vote when I damn well know everyone else in the running deserved some good news just as much as I did? That’s not me. I loathe the pain olympics that so frequently comes with this infertility business, and I despise myself for indulging in even a tiny bit of, “Why not me?” I hate that infertility has made me ashamed and afraid of the jealous monster always lurking under the surface. I hate how I’ve become accustomed to living all aspects of my life as if they were a competition.
The Mr. just texted to ask me how I was “holding up.” I’m frustrated that the answer always seems to be, “not so hot.” I know he’s in pain too, but I somehow am lacking the capacity to acknowledge or respect that. If not altogether, than at least to the degree to which I think I should. This man has brought years and years of joy to my life, and now I feel as if all I give him in return is pain and suffering. No one should have to have the “in sickness and in health” part of their marriage come to full bloom before their spouse even turns 30. I am angered by the fact that he’s a pro at giving PIO shots, that he knows what the products of a miscarriage look like, that he holds our friends’ 5 month old with a mixture of joy and deep sorrow, that he constantly has to text, “How are you holding up?” Infertility has forever changed this man who did nothing wrong except make the mistake of loving me.
I didn’t start this post intending for it to have a happy ending. But, getting it down, I realize in a small way it has to have one. I’m hiding in my room, but I’m doing so because infertility has taught me my limits. And, that is good. Stepping back from social outings when your heart is aching is something the old me wouldn’t have done. I’d have put on a brave face and suffered for the sake of those around me. That is not good.
The physical scars of infertility are difficult, but without infertility my Hashi’s may never have been diagnosed, I wouldn’t have lost the pounds and gained the health that Metformin returned to me, I wouldn’t have had the laparoscopy that diagnosed my endometriosis or the autoimmune testing that has let me know I’ll need to keep a careful eye on my health for the rest of my life.
Perhaps most central to my thoughts today, without infertility I would never have met my “friends in the computer.” These women who have done everything in their power to refuel my soul, provide me with virtual shoulders to cry on, and hold me up when all I want to do is fall so far down the bottom of a dark pit that I’ll never be able to claw my way out. And, it’s only from having watched my mom lose her battle with cancer that I know how deep that pit can be and how important it is I never fall down it again.
Despite today’s news, infertility blogging has still been a tremendous gift in my life, and it would be incredibly stupid of me to allow anything to change that. Through blogging I have supplemented my support network with new faces and avatars, new sources of sanity, new women that I root for. High on that list is this year’s Hope Award winner Tracy of Just Stop Trying and It Will Happen.
And, finally, the mister. What I need to say I’ve already felt in my heart as I put those words to virtual paper above. Each one of those words would anger (and probably will anger) Mr. But IF if (when) he read them. As he said last night, “I got you, and that’s all I need.”
I wish I could stop infertility from making me forget how good I have it. I hate what infertility has made me, but I’m not, nor have I ever been, powerless. I’m going to be sad for a long while, but the sadness won’t always be all-consuming. I have to believe that some day I’ll stop mourning what infertility has made me and start embracing what infertility has given me.
Limbo
That’s where we sit. Squarely in the middle of “Who the hell knows.” I’m so tired of being such a unique fucking snowflake.
As I described yesterday, pregnancy tests (even beta blood draws) aren’t cut and dry for me. Last month, on the eve of my BFN I explained my post-HCG booster beta scale as such:
- <40: Abandon all hope ye who enter here. Totally not pregnant
- 40-300: Who the fuck knows? Another round of beta hell
- >300: How did my lab’s get mixed with someone else’s? Could it actually be…
You see, when injecting pregnancy hormone straight into one’s system every three days it’s apparently difficult to tell what pregnancy hormone is from a needle and what is (or is not) from an embryo. One needs a scale to mentally prepare for the uncertainties involved.
My beta was today. The result another mindfuck. 38. I don’t even fucking know what to think about a 38.
The helpful chipper nurse on the other end of the line said, “We like to see 40, but this is a start.” I responded, “You’re happy with a 40 even with the boosters I’ve been taking?” Her: “Wait, you’re on boosters? That’s not in your chart!” Me: “Yea…” Her: “Well, don’t take any more boosters just yet. We need to figure out if this is something or not. Go for another blood test on Thursday. Have a nice day!”
Since that conversation at about 11:30 this morning I’ve done the following:
- Called my boss, said I suddenly didn’t feel good, and informed her I was going home.
- Arrived home, ate a balanced lunch of corn chips, salsa, and an ice cream sandwich.
- Cried.
- Petted the kitty that immediately found my lap.
- Slept. Lots of sleeping.
- Whined to my lovely friends in the computer on Facebook. I got obnoxiously “woe is me” and I kinda want to go back and delete my most dramatic posts, but gotta mark the moment, right?
- Thanked a billion of you who reached out to me on Twitter.
- Slept some more.
- Had a total fucking meltdown with the Freedom Fertility Pharmacy rep when she called to tell me there was a problem with my Crinone order.
- Listened to the newborn across the street wail, while watching my very pregnant neighbor play with her son in the front yard.
- Held Mr. But IF as he asked, “Why does this always happen to us? Why is it never a simple ‘yes’ or ‘no’? Why can’t we just have answers?”
- Petted the kitty some more.
- Cried a little more.
On the docket for the rest of the night? Well, I have some Mad Men to catch up on, I have a cross stitch project I’m working on (ssshhh.. it’s a secret! I’ll share pics when I’m done!), and I have, of course, more kitty petting, online whining, and crying to do.
How will I survive until Thursday? Why does it have to be so hard?
One day more…
Tomorrow.
I don’t even know what I’m hoping to hear tomorrow. That I’m pregnant? That I’m not? That I might just be somewhere in the middle of pregnant and not? All options are known to me, all possible outcomes already lived. Save the one that ends with a baby in my arms in several months’ time, that is.
This morning a Twitter friend asked, “How are you feeling?” That question struck fear straight to the heart. I’ve been trying mightily not to answer it even to myself. To be honest, I’m feeling pregnant. Having experienced early pregnancy and positive pregnancy tests three times before, I know my signs. I feel like I’m getting a cold, I’m having some cramping, I’m having vivid dreams, and well, my pee, it just smells funny. All are “signs” I’ve had with past pregnancies, and all are symptoms I’m trying with all my might not to notice. Getting one’s hopes up just makes the inevitable crash down all the worse.
Another cycle down, and I still don’t know how I feel about not being able to test on my own in the comfort of my own home. You see, due to my history of shitty betas and P4 levels during my pregnancies past, I’m on a steady diet of HCG booster injections every three days following ovulation (or, in this case, IUI). Aside from the fact that this means yet one more injection, it also means traditional home pregnancy tests are useless to me. They test for HCG. I’m injecting myself with HCG. As far as a pregnancy test is concerned I’ve been pregnant since the day before my IUI. Thanks for nothing, right? Ultimately, it means my D-day is my blood test day, and not a moment before. And, it also means that it might be more of a D-ish day, because even the blood test might be partially fooled by my shoot-em-up ways (though it wasn’t last month).
The way my mind is rambling over this blood test situation is actually pretty similar to how the rest of my thoughts are going. Somehow I’ve lost the big picture in this all. Maybe it’s self-preservation, or exhaustion, or just not giving a damn any more, but I can’t find it in myself to get worked up over the fact that tomorrow will tell me my fate. No, instead, I’m sweating the small stuff. I’ve lost the forest while staring intently at the bark of one tree. I’m nauseous at the thought of having to go back to the local hospital lab and interact with Ms. Chipper “I’ll be your surrogate!” Phlebotomist. I’m terrified to get that phone call at work. Again. I’m planning the beer I’ll have at Wednesday night trivia to signal to all my friends that, yep, we failed again.
If I even allow myself to think about the possibility of a positive, I catch the same worry-train, just one headed in a slightly different direction. I’m fretting over traveling to my work conference in New Orleans at 6-7 weeks pregnant. I’m exhausted already thinking of yet more trips to the local hospital lab, yet more early morning drives up to the RE for scans, yet more waiting for the inevitable to happen. And, most of all, I’m extremely frustrated that another miscarriage could totally screw up my timing. If tomorrow’s test is positive, and if the pregnancy lingers longer than my second, that most certainly means my pre-op appointment on the 6th and, as a result, my laparoscopy on the 20th will be cancelled. And, just as the white out is drying in the RE’s surgical appointment books I’ll probably miscarry. It’s what I do. But, by that point it’ll be too late. So, instead, we’ll begin treading water again and waiting for another surgery date to open up in a few months’ time. Because, there’s clearly nothing I like more than endless, fruitless waiting.
So, in summary, keep sharp things away from me when I’m in the presence of the phlebotomist (err… needles, damn), I miss peeing on my hand and crying over negatives in the luxury of my own home, and this (as of yet to be diagnosed) pregnancy better not fuck with my trivia night buzz, my work week in NOLA, or my lap on the 20th. Let’s face it, I guess I’m just a better me when I’m barren. Why end this laugh-a-minute, low stress life with a pregnancy?
A whole lot of (blog) lovin’ going on
I have to say, when I started this blog I never thought it’d get much traffic. I shared the link with my core group of infertile friends in the computer, I shared it with my support group, and I shared it with a select few real life friends. That was good enough.
Suddenly, I’m finding myself receiving e-mails at a rapid clip with some pretty startling bits of news, offers, questions, and surprises. First, there was the nomination. Then, the ever-amazing Jay (@the2weekwait) wrote to ask whether I’d like my blog to be featured as Fertility Authority’s Blog of the Week. (And, of course, the answer was a resounding “YES!” My blog will be featured in Fertility Authority’s Daily Shot newsletter next week.) At the same time, many of you have used my contact form to reach out and ask for assistance – tips on managing thyroid disease and infertility, questions about how to successfully run a support group, wondering how they can help fundraise for RESOLVE or become more active as an advocate. To all of this all I can say is I’m totally not worthy. I just wanted a place to tippy type out my measly thoughts each day. How did that act of extreme narcissism result in such a warm and fuzzy giving back feeling? Blogging is truly incredible.
Aside from totally flooring me, all these offers and queries have made me realize something else. Whether I planned it or not I suddenly have a (somewhat) powerful voice in this community. Despite my accidental activism being the topic of my NIAW post this year, I never fully realized how the act of blogging would extend the reach of my influence. And, that’s a pretty heady realization.
You see, in my “real life” I operate in a professional world in which you always back up your sources, you always do your research, and you eat, sleep, live, and breath your research area until after years and years of immersion in this academic milieu (or indentured servitude) you might slowly start to make your mark. You may slowly start to have influence. And, that’s if you’re lucky.
So color me surprised that after a few months of bantering about on the Internet about my lady bits, disdain for doctors and insurers, and the advocacy of others, I’m suddenly some sort of (minor) somebody. That’s a lot of pressure!
So, I’m going to slowly start passing along a little some of this attention and the resources that come with it on to you. Separate from my selection as Blog of the Week, I was contacted by another person at Fertility Authority asking the following:
Would you be interested in working together to direct those visitors looking for clinic information to our FertilityAuthority services? We have a toll-free phone support system for folks looking for clinic or treatment information. It’s free, and we leverage our relationships with clinics to get folks in faster, help step them through any cost questions, etc and help all parties throughout the process.
Now, I’ve never had much trouble getting appointments with REs, but that’s out of some sort of dumb luck, or my bad choices in picking sub-standard REs (quite likely), or because with my wonky months-long anovulatory cycles its not like I’d ever be able to plan a consult for a “good” time of my cycle. I know that plenty of others do have trouble finding and getting quality medical care in a timely manner, and if Fertility Authority can help with that, totally more power to them! I also bopped around a bit on their site this afternoon and was happy to see reproductive immunology, childfree living, and other topics very important to me represented on the site. I don’t know how they monetize their services or how their business model works or any other such stuff, but I don’t really want or need to know. That’s for potential clients to figure out (and if you are a client I’d love to hear your thoughts in the comments below!). What remains for me to do is simply to say that this service exists, it looks pretty exciting to me, and wish you all well. If there’s one thing you can never have too much of in this IF battle, it’s support and information. Fertility Authority offers both. And, that’s pretty damn cool to little old me.
Slow down this ride so I can enjoy my infertility
Hello pals. I’ve been a bad, bad blogger, haven’t I? I never anticipated I’d be gone this long, but then again life has a way of always delivering unto me that which is unanticipated. Dead mother? Check. Infertility? You betcha! What’s a little bit of why-is-my-life-so-crazy-right-now-of-all-times-dear-god-it’s-the-TWW-I-don’t-have-time-for-this between friends?
I honestly don’t even know where to begin. And, I guess that’s a large reason why I’ve been AWOL. So, we’re just gonna roll stream of consciousness style…
I’ve been doing a lot of waiting
First, there’s the obvious – my IUI was 9 days ago, and my pregnancy test is 5 days from now. I have no idea how I feel about either of those things. Knowing what we know now, that we didn’t know when this cycle began 29 long days ago, I have about 0% certainty that this cycle actually worked. My endo was much, much worse than we ever knew before, my symptoms have definitely been flaring (and it’s not all psychological… because they were before righty went missing), and last month’s total fail after tons of work and effort has me sour to the whole sperm and egg make embryo make fetus make baby thing. Since I’m so totally convinced this whole exercise has been a work of futility, I’ve been more than a bad, bad blogger, I’ve also been a bad, bad infertile. In the past 29 days I’ve eaten tons of gluteny goodness, I’ve had a few cups of coffee, and (look away! look away!) I went to and fully participated in a brew fest last Saturday (4dpIUI for those of you who are interested). I haven’t had a drink since we started trying again earlier this summer, but on Saturday I stopped giving a shit. I wouldn’t be me if I weren’t stressing out about it a little bit after the fact, but all-in-all I’m happy with my decision. I did EVERYTHING right last month, and didn’t have an inkling of a positive; maybe this minor rebellion will result in a different outcome? I drank quite a bit around O time with my unlikely ectopic, and my February miscarriage was conceived over a Christmas break that was definitely not devoid of alcoholic delights. Maybe my eggies are like their grandpa and just need a little booze to get them going in the morning?
Next, no, I haven’t heard anything about the Hope Award. Ever since the voting closed last Wednesday I’ve been holding my breath each time a new email arrives to my inbox. While it’d be totally cool to win, I’m just excited to hear the announcement so that we can celebrate as a community with the lucky winner (no matter who she or he may be!). We all do so much endless, lonely waiting; it’s nice to know there is some positive news on the horizon for one member of our community!
Finally, I’m waiting for Mr. But IF to get home from a work trip. He flew out Monday and is due back sometime in the wee hours of tonight or tomorrow morning. The pattern is always the same when Mr. But IF goes out of town. For the first few hours I embrace my new-found single-hood. Then, likely before his plane even touches down at its final destination, I start remembering how truly much I need him in my life. I’m not the mushiest person in the world, but absence makes the heart grow fonder and all that jazz. When he returns I’ll be sure to remind him of all the ways I missed him – I had to take out the trash on Tuesday, I had to empty the cats’ litter boxes, and I even had to suffer the comical indignity of an oh-s0-wonderful friend assuming his nightly PIO injecting duties. But, at it’s core, I just missed my friend.
While I’ve been waiting lots of exciting and excruciating things have been happening
Have ya’ll heard the news from our good friends Candace and Chris at Our Misconception? So I avoid putting words in their mouths, here’s what the wrote me earlier this week:
Alright so here’s the skinny… I was contacted about a year ago by MTV for their show on Infertility. So # 1 didn’t really seek this out, but my husband and I thought ok its either going to be some young snookie type chick that started trying last week or us, the real infertiles. […] So we put ourselves out there and shared every bit of our highs and lows that come with IF. Also something to note, we were not paid to do the show. Both of the couples (myself and another GREAT couple) did this simply for awareness and advocacy.
So, that’s right, this Sunday at 2PM EST MTV will be airing (the cringe-worthily titled) “True Life: I’m Desperate to Have a Baby.” The God awful title aside, I really hope this will be a positive pop culture depiction of the ups and downs of the infertility journey so many of us face. The Atlantic, Slate, and The New York Times can write as many (good and horrible) IF-related articles as they want, but MTV’s target audience probably isn’t driving up those articles’ page clicks. And, let’s be honest here, wouldn’t it be nice to have one hour free from “16 and Pregnant”? I just wish I got MTV… well, kind of… not really… Also, during the episode, Candace and Chris will participate in the #TRUELIFE1in8 Tweet Chat, moderated by @FranMeadows and @hopeful_journey. Pretty cool stuff, no?
On the other side of the spectrum, I think my bloggy meltdown commenced when I read this gem (warning: read with a glass of wine and a bevy of curse words at the ready). A few days ago I tried to blog about this, but all that came out was incoherent rage. Today I tried again. I hoped time and distance would allow me to form a more polished response to Mr. Saletan’s intentionally antagonistic “every embryo is sacred” diatribe, and I think it has. This letter is all I can muster.
Dear Mr. Saletan,
In your July 16 article “The Boy Who Lived” you crassly wrote:
Every year or so, doctors herald the arrival of a new embryo test, certified by the birth of a healthy baby. But the babies you hear about are the lucky ones. For every success, there are dozens, hundreds, or thousands of embryos that failed the evaluation. You won’t see their pictures, because they’re never born. They’re flushed away.
From the start your word choice, clearly chosen for shock and awe rather than accurate reporting purposes, told me what type of article I was reading and what type of author I was dealing with. You and so many others operate in the naive belief that reproduction is cut and dry. Sperm meets egg, embryo results, embryo becomes fetus, and fetus becomes baby. Any alteration of this order, any intervention in this path, is anathema to all that is “natural” and “right” in the world. You blindly ignore that nature already ends an estimated 40% of all pregnancies completely on its own, most before a woman even knows she is pregnant. The American Pregnancy Association reports that, “anywhere from 10-25% of all clinically recognized pregnancies will end in miscarriage.” Or, to be more accurate with our terminology, spontaneous abortion, as this is what is used for any pregnancy that ends prior to 20 weeks. We don’t you mourn those unrealized pregnancies? Why don’t you write to mourn the loss of those pictures on the wall? Four million babies are born in this country each year, meaning that a full 1 million pregnancies end in miscarriage.
Let’s compare this to the number of embryos you say are “flushed away” as a result of failing genetic evaluations. According to RESOLVE, infertility impacts 7.3 million people in this country. According to the American Society for Reproductive Medicine, only about 3% will resort to advanced reproductive technologies like in vitro fertilization (IVF). That gives us a total of 219,000 infertiles pursuing procedures like IVF. The next step gets a little trickier, so I’m having to resort to clinic-specific data. I’ve been with two REs in two different states. My current (a very large, very popular, very high traffic clinic that uses many advanced technologies) performed genetic testing on embryos in only 4% of their 2,318 IVF cycles in 2011 (the last year for which statistics are available). My former clinic (a small one-man-show office) performed preimplantation genetic testing (PGD) on 6% of their 208 IVF cycles in 2011. If we assume that these stats are about average, that means about 5% of those 219,000 IVF patients will perform genetic testing on their embryos in a given year. That leaves 10,950 patients pursuing IVF with PGD. In order for these patients to discard the same number of “flushed embryos” as nature does in a given year, each party would have to be individually responsible for the destruction of 91 embryos each calendar year. If you think that sounds like a realistic estimate, Mr. Saletan, then I have some news for you…
I’ve been battling infertility for almost 4 years, and in the process have endured 3 spontaneous abortions. The last one this past February happened at 8 weeks after seeing wiggling bits of embyonic blob and hearing the heart thump, thump, thump away. Yet, for whatever reason, that embryo stopped growing, my body dispelled it, and my dreams of parenthood were again dashed. Having lived through that loss, genetic testing becomes much more appealing. Not only to avoid the pain and suffering that came along with my loss, but also to avoid the brash and offensive response I received from the medical establishment when I presented myself to the nearest ER with an OB/GYN unit on a Saturday to attempt to collect my now-dead embryo for testing. “It’s a Saturday,” they said, “And you aren’t an emergency.” As the tears welled up they explained with finality, “There’s nothing we can do for you. Miscarriage is common. Check in with your doctor on Monday.” At my last straw I begged and pleaded for them to help me find a way, any way, to get these products of conception tested in the hope that no future embryos would suffer a similar fate. I was handed two sterile collection jars and my discharge papers. I flushed my embryo at home that night while waiting for a dilation and curettage that was scheduled two days too late. I would do anything not to have to live through that trauma again, and genetic testing is one option that promises respite from future flushings of that sort.
And, finally, what of the research value these “flushed ones” have to offer? You yourself write:
Embryo screening hasn’t made the world a sadder place. It has made it better. It has prevented cystic fibrosis and other terrible diseases. If you worry about unborn life, it’s better to catch genetic problems early, at the preimplantation stage, than to discover them in the womb many weeks later and abort the pregnancy.
And on this we wholeheartedly agree. But you then go on to question which genetic tests are worthy and which are not. To identify tests for genetic predispositions and certainties that don’t merit consideration because it risks, “[…] discarding embryos over the possibility of breast cancer, which rarely strikes before age 30, and early-onset Alzheimer’s, which doesn’t begin till 40 or 50.” Nature, you say, created “genetic misfortune” and “the ruthlessness of selection,” and in this you implicitly suggest that we should comply. Or rather, when we don’t comply, when we try to fight back, when we dare to flush, we should not “[…] hide the tragedies and the cost.” But if nature is behind these tragedies, why do you only single out the tragedies of IVF? Why not the 1 million spontaneous abortions resulting from naturally occurring pregnancies? Why not an article on those flushed ones?
If I’m forced to use your overly emotional language, I myself am more stricken by the tragedy and senseless loss of those million natural miscarriages than I am those embryos discarded after failing genetic testing (no matter the type of genetic testing to which they are subjected). And, this is for one primary reason. Those natural embryos are the ones that are unceremoniously flushed. Trust me, I’ve flushed a few myself. I sought testing, I sought answers, I sought assistance, and I was told to go home and quietly miscarry like the millions upon millions of women before me who had done just the same. When testing is performed on IVF embryos, those results matter. They are recorded, they are used to inform patients, they are used as the basis of medical journal articles. The embryos that are inspected via this testing are respected far more than the million silent flushes happening across this country every year. In their 2009 article “Destroying unwanted embryos in research: Talking Point on morality and human embryo research” Thomas Douglas and Julian Savulescu highlight exactly this point. The article is highly quotable and I struggled heartily with what to reproduce here. Should I highlight their argument that, with over 220 million natural embryo deaths each year, “[…] we ought to do something to reduce this staggering death toll: we should try to discover its biological basis and we should prioritize the development of therapeutics to prevent it given that it would be a greater cause of human death than all other causes combined”? Should I paraphrase their moral thought experiment of what to do if “[…] a refrigerator containing 1,000 unwanted embryos has fallen onto a small child and is crushing her to death”? Ultimately, I’ll leave it with their final concluding phrase, the only phrase I feel that really brings solace to those of us who face these difficult decisions as I hope, Mr. Saletan, you never have to.
Embryos have a special moral value when they are a part of a plan to form or extend a family. When they are not part of a plan to form or extend a family, they can still have a special moral value: as a means of extending knowledge and saving or improving the lives of people.
Posts I’d planned to write
Blogging has been good to me. And, not just because recent accolades have fueled my (potentially overfull to begin with) ego. (Oh, and PS, voting apparently ends tomorrow – 6/17/2013 – so get your votes in!) I’ve discussed before how important it is to find community (whether virtual, in person, or some combination of the two) when you are going through this battle to conceive, and blogging (along with Twitter, online forums, and my in-person RESOLVE support group) have all played a major role in decreasing the sense of isolation I’ve felt as the years have rolled on. But, there’s another positive aspect that only blogging has added to my life and that was missing for so many of the early years. Some might call it the freedom to be selfish or the luxury of self-reflection. Namely, blogging has provided me with the time, the space, and the reason to actually explore what’s rambling around in my mile-a-minute head. I can’t express how helpful that’s been and how profoundly that’s changed my life, my relationship, and my sense of clarity.
You want to know a dirty little secret? I’m kind of a lazy blogger. You all only read about one quarter of what actually flows through my brain. Easily another quarter I do write about, read back, assess, revise, and, ultimately delete. These thoughts weren’t fully formed, they weren’t quite what I wanted, they didn’t fit within the larger scope or arc of the post that I wrote them for, or, often, simply the act of writing them fulfilled the need I had to express them. Whatever the reason, they never appear hear. Finally, over half of the posts I plan to write, I never write. I think of the theme of the post, I work it over in my brain for half a day or more, I think of visuals, useful related links, and start writing key passages in my head. But, ultimately, virtual pen never makes it to paper. My work day runs longer than expected, friends ask us out to dinner, or something much more important happens that needs to be addressed in a timely manner in this space. And, ultimately, those posts are lost to the hollows of my mind along with the others sacrificed to the delete key.
Even though you don’t read them here, however, all that upfront intellectual effort is so tremendously worthwhile. It allows me to view my life and live each day with a greater sense of clarity and some separation from the stresses of the day to day. It’s almost like reading a self-help book or practicing visualization or centering my being or some such other nonsense that would totally not normally be in my vocabulary. Except, instead of reading a book of someone else’s words, I’m embracing words of my own divining. I’m reading the story of my life in a new and exciting way. I’m not just tied to the here-and-now thoughts I’ve expressed in the past on online forums, Facebook, or Twitter. I’m no longer reading chapters wholly composed of “IUI today on CD20” or “Follie check this morning was a disaster.” Rather, I’m both writing and reading a story that delves much deeper. And, that holds true whether pen actually makes it to paper or not.
So, that’s a long lead up to this. Life’s been busy. A friend asked us out to dinner. Work’s been all-consuming. The two-hour round trips to the RE for 3 of the past 4 days have taken their toll. This blog has been left languishing. But, it’s not for lack of effort. As a way of catching you all up, here’s a sampling of the posts I’d planned to write:
- Saturday, July 13
- Title: If you find righty… Tales of an AWOL ovary
- Description: In which I recount the second follie check in a row during which the NP cannot find my right ovary. My immediate panic that it’s left on a relaxing beach vacation without me. My more realistic panic that the constipation I’ve been having combined with her disappearance means the endo is back in full force. The news that lefty’s still only sporting a 14mm. The realization that Mr. But IF leaves for a work trip next Monday and that could royally screw, well, our screwing schedule. The not knowing if the cycle will be cancelled. The silent wonder over which option (cancellation or moving slowly and steadily forward) is actually my deep-down longed for option. The familiar feelings of failing.
- Sunday, July 14
- Title: I’m totally the most amazing person ever
- Description: Seriously, is a description even required? Har… har… But, no seriously folks, I answered a text from a friend that wanted to go out to dinner with me on Saturday night. A friend with *gulp* a 4-month old. A friend whose said 4-month old should have been besties with my little one due this September. A friend whose dinner I cooked a few days after her and baby A had come from home from the hospital. A dinner that I cooked less 3 weeks after my D&C. And, who is the most amazing person ever? This girl! My ovary may have been hiding, but I didn’t! Went to dinner and, oh hell yea, held that sweet-cheeked little bundle of that-which-I-can’t-have for freaking ever while the slowest restaurant in the world made our dinner. And, I actually had a good time. Look at me, all emotionally strong and shit!
- Monday, July 15
- Title: Premature insemination: Tales from the clinic that always says “no”
- Description: Returning for my 6th follie check of the cycle. Repeating silently to myself as I laid down to sleep, as I washed in the shower, as I drove in the car, “Please let them find righty.” Preparing for cancellation, anticipating cancellation, accepting cancellation. Discovering that righty’s back (back again!), and sporting a matched set of 14mm follies. Exhaling for the wait ahead, before finding that lefty’s lone 14 from Saturday, is now a juicy mature 18mm. Doing a different type of exhaling as I realize the game’s afoot and I’m about to trigger. Getting the instructions to trigger at 9pm. Getting thrown for a loop when asked what my schedule is for the following morning (less than 12 hours after trigger). Being informed, after I questioned the abbreviated time frame, that, “We always do IUIs 12 hours after trigger!” Leaving with an IUI appointment 10.5 HOURS after my trigger shot!?!?! (when the “normal” is more like 24-36 hours). Being a bad girl and triggering a few hours early. Spending the day frustrated at a that clinic only does what the clinic always does as the clinic is always right, silly girl!
- Tuesday, July 16
- Title: Well and Truly Basted
- Description: In which I recount my first ever IUI. Mr. But IF’s 6:30AM wank-job, my frantic drive to the clinic with deposit in tow, my realization that my hurry mattered little as I waited, and waited, and waited, and finally had my date with the turkey baster 2.5 hours after, ahem, “collection.” My luck at arriving to find no NP or doctor available to assist me, and instead winding up inseminated by a friendly and apologetic surgical nurse. The two hours of foreplay with my emulsified fat milkshake before the unlubricated speculum and catheter got frisky. The unanticipated pain of the procedure itself (way worse than two HSGs, including one I failed), followed by a worry about how much post-IUI spotting is too much post-IUI spotting. The wonder. The worry. The waiting. The far too much time laying in the procedure room after wondering, worrying, waiting.
So, righty’s back, I held a baby, my IUI was both quite painful and likely quite pointless, but I’ve got 66 million swimmers on board looking for my wayward egg (which may or may not arrive in time). Oh, and don’t hold your breath for more posts soon. My fears over the timing of my IUI will mean Mr. and Mrs. But IF have dates with each other naughty bits for the next couple nights. I totally believe in multi-tasking, but I still don’t know what Mr. But IF would think if I asked him to stop bouncing the laptop so much because I’m trying to blog. Naw, scratch that. I know exactly what he’d think. “Just make sure you tell them how good I’m doing!”
Happy birthday little one…
On October 30, 2011, I saw this:
I was pregnant. I was stunned. I was overjoyed.
The reason that there are so many tests is that I literally couldn’t believe it. My lovely IF friends in the computer encouraged me (aka pee-pushed me) into taking dozens of tests in the hopes of getting me to accept what was so very clear to their eyes. I was pregnant.
My disbelief stemmed partly from the sheer newness of a positive test after over a year of negative ones, as well as the unlikely scenario that led to that second pink line. For that pregnancy cycle, my period started on August 26, I flew to New Orleans for a family vacation/family wedding combo on October 17 (CD53), enjoyed oodles of vacation sex, ovulated on my own on October 19 (CD55), rang in my 28th birthday in a NOLA jazz bar with plenty of libations on October 20 (CD56), returned to plain old life and home on October 24 (CD60), and saw those lovely lines on October 30 (CD66/11dpo). To say the result was unlikely is an understatement. And, this was long before knowing all I know now about my endo-riddled organs. I couldn’t help but laugh (or at least “LOL”) when I wrote to my IF friends in the computer, “I guess all I had to do to get pregnant was take a vacation afterall! Grumble…” For once, it seemed, the odds were in my favor.
As I welcomed the constant parade of trick-or-treaters in our family-friendly neighborhood, from the front porch of our first house that we bought to hold our future family, all I could think about was how the following year I’d have a little pumpkin of my own. So, on Halloween night as I went to the bathroom in the spare quiet moment between fueling hordes of candy-craved princesses and monsters, I was startled to see a bit of pink on the toilet paper as I wiped. I’d been in the TTC game long enough to know it’s premature to fret over small amounts of blood in the early days of pregnancy, but I was terrified. I called my OB the following day and, after pleading with the nurse on call, they agreed to draw a beta. Then there was more blood, more frantic calls to the OB nurse from the broom closet of my former work space, and more betas. Then the cramping picked up, my fingers started turning blue, and I made a few more calls. My betas were initially good, but then started acting strangely. They rose, but not enough. The OB nurse was nonchalant throughout it all. When she did bother to return my calls, she’d offer me helpful advice like, “Start getting used to the little pains of pregnancy!” or “Spotting is totally normal at this point” or “We don’t believe in testing progesterone, supplements won’t do anything anyway.” When, in the fifth week of my pregnancy the cramping escalated and the bleeding continued, I started asking for the nurse to discuss my case with the doctor. As I entered the sixth week my beta was just shy of 500. The ever on-again/off-again (and currently off-again) betabase.info lists the median beta for that stage of pregnancy to be 10,936. Something was wrong, and the odds weren’t in my favor.
After what must have been my 7th or 8th “please help me I’m worried” call to the OB, she agreed to send me for an early ultrasound at a local imaging facility. I was just around 5 weeks. As Mr. But IF and I sat there anxiously, the tech poked my overfull bladder with the abdominal probe since my ultrasound had been ordered in the same fashion as one would be for a woman much further along in her pregnancy. Not surprisingly, nothing was visualized abdominally, so we switched up to trans-vag. It was my second ever trans-vag ultrasound, with the only prior one coming when I forced my GP to send me for testing for PCOS in 2009 in an attempt to help us decide when we should start trying to conceive. But, that GP sent me for an ultrasound while on birth control (“It doesn’t matter, they can tell either way!”), so visit #1 with Mr. Wandy was a total waste of time. This would be the first that really mattered. And, she saw nothing.
At some point between the end of my fifth week and the start of my sixth, the combo of my empty uterus and abnormal betas finally started to concern my OB. She went from failing to return my calls to scheduling me in for an emergency appointment in the matter of two days. When we arrived to the busy OB waiting room for my “we’ll squeeze you in” mid-day appointment, we had no clue what the visit might entail. As incredibly pregnant woman after incredibly pregnant woman went back for their visits, my heart raced, my hands shook, Mr. But IF scowled. When we were finally taken back over an hour late for our appointment, the nurse got in a fight with me over the name of the brand of prenatals I’d been taking (“I need the name to enter it into your chart!”). I cried as the pictures of plump and happy babies stared down at me from the exam room walls. When the doctor entered she matter-of-factly outlined our options. “It’s an ectopic pregnancy,” she said. “You’ve got three choices, but there’s really only one I’d recommend. First, we do a D&C, but that’s probably pointless because I don’t think we’re going to find anything. Second, you wait and continue to do betas. I will only do them once a week and I won’t be held responsible if your tube ruptures and you lose it. I don’t advise this option, but it’s there. Just go to the hospital with any pain if you choose this route. Finally, we can send you to maternity triage for a dose of Methotrexate. This is the only option I’d recommend.” We asked for a beta the following day, and promised to go to triage if the number hadn’t risen appropriately. As the doctor walked out the door she said, “Don’t cry. I’ll see you back here soon enough!” That was the last time I ever saw that doctor.
On November 18, 2011, I walked into the women’s health wing of our local hospital pregnant. I left a few hours later with chemotherapy flowing through my veins. The same drug that is used to kill rapidly growing cancer, was being used to kill my likely wayward embryo. Two days later, after passing out on our bathroom floor, I was back to maternity triage. I was bleeding heavily and experiencing my first miscarriage. As the nurses got an IV started in an attempt to correct my barely perceptible blood pressure, I started having contractions. After I passed a large sac, it was scooped up and deposited in the nearest biohazard container. I wish I knew then what I know now. That passing a sac like that would be highly unlikely with an ectopic. That I could have requested to have those products tested. That an empty uterus via an ultrasound done at the 5-week mark couldn’t conclusively prove an ectopic. That the Methotrexate would curb all trying to conceive attempts for three full months. That in those months I’d find my tubes were blocked, that I had endometriosis, that I was far more fucked than I ever thought. That that embryo was my miracle child, forged out of the unlikeliest of scenarios and the last true pregnancy I’d see for a long while. But, we can’t live our lives through what if’s.
Save for one, that is. Today I find myself thinking, “What if things had gone differently? What if that embryo had become fetus had become baby had become my longed-for child?” Today would be my son or daughter’s first birthday. Happy birthday little one.
Not when, but IF 