My Body's Doing Great; My Mind, Not So Much

First, the really good news: a followup scan of my ovaries revealed that they look healthy and normal! Well, mostly - there were two small endometriomas as of December, and although it does appear that they're still there, they're actually smaller than they were the last time we saw them. I guess that mini-pill really is doing something.

I don't mean to minimize the above. This is a really, really big deal. When my doctor confirmed that I was stable for the time being, I felt a tremendous weight lift off my shoulders. I've just bought myself six months of the status quo (knock on wood), and that's a pretty good quo if I do say so myself.

But. But but but but but. For a variety of reasons, the last three weeks have been pretty awful. I've been re-confronting a lot of my negative feelings about infertility, pregnancy, medical care, my body, and my own mental health. It's been over a year and a half since I found out that I was infertile. A very eventful year and a half, but still - this is not exactly breaking news. I am extraordinarily lucky and I feel so grateful that I have a healthy child after my first cycle of IVF. Yet I spent most of the past three weeks on the verge of tears while I waited to hear the all-clear from this scan. Why?

First of all, my infertility journey isn't over. Not by a long shot. I have three embryos on ice from the cycle that gave us our darling O, and I feel a responsibility to give each one of them a shot to grow into a baby. This means that there will come a day when I have to walk back into the fertility clinic that I associate with so many bad memories, sit down across a desk from my doctor, and go over my future plans with him. Then I'll have to go through at least one Frozen Embryo Transfer (FET) cycle with them - the same doctors, the same nurses, the same waiting room, the same exam rooms. I cannot tell you how much I am dreading this. And if my recent scan had come back with any indication that the cysts were growing, it was possible that I would have set up that next fertility appointment as soon as the clinic had an opening in their schedule. So while I'm thrilled and relieved that I bought myself at least another six months, I still know that this is going to happen at some point, and I do feel a bit like all I got was a stay of execution and not a full pardon.

Also, there was a bad moment during the scan when the ultrasound tech saw something odd in my uterus (no, not a baby, I promise) and asked if I had had an endometrial biopsy. Let me assure you now that I have no indications that would suggest I needed an endometrial biopsy, and when I spent a few minutes with good old Dr. Google looking at related ultrasound images after the appointment, I think that all the tech was asking was if I'd had one in the past since it might have explained a particular finding. I haven't, and the finding was benign, so there's nothing to worry about. Except that in between when she said it and when I got back to my computer and did my research, I took two minutes to look it up on my phone, and learned that it's usually an in-office procedure that is performed without sedation even though some women find it painful. This was enough to send me into a total tailspin. It's hard for me to articulate how upset I was even reading about women's experiences with endometrial biopsy; as I write this today, just getting the link for the sentence above I lost about twenty minutes reading comments and holding back tears. And this is for a procedure with which I have absolutely no connection! The problem is that I know someday, someone will recommend that I do have an endometrial biopsy - or a hysterosalpingogram, or a dilation and curettage, or any number of other gyn procedures that are invasive and painful up to and including another fresh IVF cycle - and I will just want to die.

Wanting to die when you hear that other people - who, let's recall, are not you - have had or are going to have painful gyn procedures is a bit extreme. I don't have any actual thought of suicide (shudder), I just have this idea in my head that experiencing more trauma between my legs would be so terrible that it seems incompatible with life as I know it. And that's not right, I know it isn't. Most of the time I feel fine - really, overall things are going well, and it's springtime and I'm wearing the sundresses I couldn't fit into last year and my baby has incredibly kissable cheeks - but I'm concerned that something so relatively minor could send me off the rails. Concerned, and angry, and ashamed, and all of the feelings that I struggled with last year. Clearly they're not just in the past.

Birth Plan! Ha!

In case anyone has missed it, over the past few weeks this amazing (parody) birth plan has been making the rounds: Jamie and Jeff's Birth Plan. It is hilarious, and wonderful, and made me wonder if I should create an actual birth plan of my own now that this whole placenta previa thing may be resolving to the extent that I'm able to attempt a vaginal delivery. After I had laughed at Jamie and Jeff's plan for the millionth time, I headed over to BabyCenter and printed this worksheet. But when I began looking it, I realized that this was, um, not really geared toward me. Demographically I'm probably likely to want the Jamie-and-Jeff spiritual and unmedicated experience, but personally, that sounds terrible to me. Nothing, and I mean nothing, has been remotely spiritual or low-intervention about this conception and pregnancy to date. So when I'm asked questions about dimming the lights and using self-hypnosis, I roll my eyes. It was traumatic getting pregnant and I have no expectations that it will be anything other than traumatic to get this baby out of me. Not to mention that even in a best-case scenario, I'll still have this blood clotting thing to deal with when I deliver, so I would be kidding myself to think that I wouldn't need interventions like an IV or continuous fetal monitoring.

That is not to say that the birth plan exercise didn't raise a bunch of important questions that Harry and I discussed in advance of my OB checkup yesterday (everything looks great with the baby, by the way.) Here are my top three birth preferences, which raised my doctor's eyebrows quite a bit when I went over them:

1. As much pain relief as possible. I know, I know, lots of women decide in advance that they want to get an epidural (or a spinal, or narcotic pain meds, etc.) I'm one of them. I don't want to be in pain. I readily admit that I am scared of the pain of childbirth. I don't care if knowing this makes you think less of me. But I'm also still epically pissed about my experience with egg retrieval and being awake for that painful and humiliating surgical procedure. And knowing that the heparin I will be on after 36 weeks gives me a 12-hour window where an epidural literally isn't possible makes me even more anxious that I will be begging for relief and it will be denied.

2. Authority to kick people out of the room (yup, even medical staff). Residents, medical students, pediatricians waiting to take our kid to the NICU - fine. No problem. Grab a chair and stay awhile. But in the event that any member of my care team makes me feel, even for one instant, like I am being judged for any single one of my choices, I want that person to leave. No, excuse me - that person will leave the room in a hail of verbal abuse. If someone tries to scold me that I'm not pushing right/is skeptical of my decision to pursue pain relief/makes an ill-timed crack about IVF/laughs at my suffering, they're likely to be at the receiving end of the months and months of anger that has been building up in me.

3. I want to be called by my actual name. I noticed when I went to Labor and Delivery at 21 weeks for my most recent bleed that nobody bothered to learn my name. Or, maybe they did know who I was, but they all referred to me as "mom." I do not find this cute, or endearing, or exciting. When the nurse that night said "Oh, that's mom's heartbeat we're hearing," what I heard was "I have no idea who you are. As far as I'm concerned, all you are is yet another woman about to give birth." Why is this okay? I have never heard an oncologist refer to a patient as "cancer lady" or a surgeon call someone "bypass guy." (Well, not to their faces, anyway.)

How did my OB react to my (very politely presented, I might add) list of requests? Um, not terribly well. She can't guarantee any of them, which I knew would be the case. Nobody knows how my labor will progress and if giving me an epidural could paralyze me by causing bleeding into my spine, that's a pretty damn good reason not to do it. She also hasn't really encountered many patients who come in to give birth really, genuinely concerned in advance about personality conflicts with the staff. And when it came to the not-being-called-mom thing, she gently explained that most of the time people are just excited and happy for the delivering woman, and it's coming from a good place. Which I get, and which doesn't change anything about how I feel. She's going to make notes in my chart about my preferences and encouraged me to express them again as soon as I get to the hospital, and offered to set up a meeting with one of the anesthesiologists for me to discuss pain relief options for anticoagulated patients in more detail. And, um, she suggested that I meet with a counselor. You know, the "let's explore your anger" type of counselor. Which I have declined.

So... there's a lot going on here. In a way I think I'm just as protective of my "birth experience" as the fictional Jamie and Jeff, because I've already seen what happens when I have a negative interaction with the medical community. And the stakes are higher this time. What's at risk is not just my ability to sleep and eat and function like a normal, non-sobbing human adult, but my relationship with my new son. He is the very definition of innocent in this whole crappy situation and he deserves the best possible start in life. If this goes badly, and there are a million ways that it can, I honestly don't know how I will be able to get past it and start bonding with our baby. And what can I do in advance to prepare for this, realistically? Nothing. Except maybe practice saying "What's my name, bitch!?" to someone during a chaotic experience in bed, which I have never done... something to look forward to, I guess?

And Now, A Few Words About Infertility and Unhappiness

Everyone who writes about their experience with pregnancy after infertility seems to say, sooner or later, that the excitement of actually gestating a tiny human being doesn't erase the experience or memory of the treatment that got them there. Not wanting to be left out of this trend, I have mentioned this feeling around fifty bajillion times. And I have no plans to stop anytime soon.

Today, I want to follow up on a post I wrote way back in January - and I want to offer an apology. Longtime readers (all three of you) may remember when I posted about a study on exercise and IVF. I seized, laughingly, on the lead author's assertion that running during an IVF cycle was counterproductive because it makes your body think you're being chased by a bear. That lead author was actually Alice Domar, Ph.D., Executive Director of the Domar Center for Mind/Body Health and the Director of Mind/Body Services at Boston IVF. And if you ever read this, Dr. Domar, I heartily apologize for making light of your exercise recommendations. Rereading the article now, I'm guessing you said about 200 other things to the interviewer and the bear comment was the one that got printed. Happens all the time, and I mean, you have to admit it did make for some entertaining reading.

Why the about-face? Well, remember that podcast I brought up a few months ago? I was listening to it the other day at work, not paying much attention, when I realized that the interviewee was none other than our friend Dr. Domar. I will admit that I rolled my eyes when I heard the title of the show, "Can You Be Happy Even While Infertile." And then Dr. Domar started talking, and my productivity level began to drop. At one point I was actually wiping away tears and hoping that nobody would come by my desk until I could compose myself. She said a ton of things that resonated with me, but this exchange is worth repeating verbatim (it starts around 21 minutes at the link below):

Domar: [The caller's] second question was, how can I be happy when going through infertility?
Host: Is it realistic to expect happiness, yeah.
Domar: You know, I don't think - most infertility patients are not happy as they go through infertility. And I wouldn't expect, I mean, if someone came in and said that they were happy as they were going through infertility, I'd want to test them for mania. So, do I think you can be a happy person as you go through all of this? No, I don't. I think some people are relatively resilient, and stay the same, but no, I don't think you're going to be happy as you go through infertility. But I think it's still possible to have moments or days of happiness, you know, ice cream is still going to taste good, and your husband or partner is still going to be attractive to you, and Paris is still going to be gorgeous, and the springtime when the flowers come up is still going to be amazing... Is your baseline going to be different during infertility than it was before infertility or after infertility? It probably will be. But you're still going to have highs and lows. There are still going to be things that make you feel good.

Listen to the entire interview here - no, really, go listen to it:
Creating A Family: Can You Be Happy Even While Infertile

I wish, wish, wish that I had heard this statement back when I was preparing for and going through IVF. It was bad, guys. It was really bad. My surgery last fall kicked off the absolute worst time of my life and, like many of us, I was struggling not only with the physical implications of my diagnosis but a tidal wave of upsetting emotions simply because I would need this treatment. Every time that treatment hit a snag, I totally lost my sh*t (and have continued to do so through a complicated pregnancy, though not as dramatically.) I hesitate to use the word "depression" even now, because I think that clinical depression should be diagnosed by a doctor and not WebMD, but all of the symptoms and warning signs were there. And I categorically refused to seek any kind of treatment for my unhappiness, which know might be hard for some people to understand, but the only time I have regretted that decision was when I heard Dr. Domar's interview. If I had been told by an expert back in November, or December, or January that it was normal for my mood to take a big hit when faced with this news - that it would have been odd for me to take it entirely in stride, that everyone struggles, that a diagnosis of infertility is just as emotionally devastating as a diagnosis of cancer or heart disease - I think it would have made a huge difference. It couldn't have stopped it, but it could have helped me put it in context, and I would have worried less that I had some sort of crippling mental deficiency on top of being infertile.

One final thought - she's right about finding things that make you happy even when something else in your life has taken a turn for the worse. Ice cream is still going to taste good. Ice cream is always going to taste good. (Unless you have morning sickness, but that's a story for another time.) There will always be ice cream, and Paris, and flowers in the springtime. And there were flowers this spring. There were!

P.S. My armpit infection is doing fine. It was markedly less sore and red about 8 hours after my first dose of antibiotics and has continued to clear up ever since. See? I told you it wouldn't be a big deal. On to the next challenge!

Still Quiet, Also Still Deranged

I am thrilled to report that everything seems to have settled down for a few days. No bleeding, lots of fetal movement, and even I can tell that my bump is getting bigger. I am continuing to have Braxton-Hicks contractions (more on that later) but what's worrying me the most right now is something completely unrelated.

On Monday, everyone in my office got the news that a coworker had given birth to her first child, a healthy baby girl. Of course I responded to her husband's email with a hearty congratulations, but I moped around for the rest of the day feeling alternately sad and angry. Everyone kept discussing the little we knew about her labor and delivery (long-ish) and how cute the baby was (very) and how much she looked like both of her parents (eh, sure), and I just - it's hard to explain, but overhearing their conversations just made my skin crawl. I had a long talk with Harry about it when I came home and we reached the following conclusions:

- It's hard to hear people discuss fertility, pregnancy, and babies without any real acknowledgement of how difficult and precarious the whole process can be. Most of the coworkers who wanted to talk about the baby were women, and many of them have healthy living children. Of course you never know for sure, but I would guess that most of them had uneventful conceptions and pregnancies and were assuming that this new mother had the same experience. I got a few comments about being "next in line!" and I just wanted to staple things to their foreheads. I have given them no reason to suspect otherwise, but they have no clue how close I have already come to delivering and how grateful I am to still be pregnant. The blithe assumption that I, too, will reach 40 weeks and be complaining about swollen ankles and tight clothes is tough.

- The speculation about her body, her labor experience, and her delivery was really ick. I am absolutely horrified that I know - I know - they will do the same thing to me regardless of when this baby comes out. I actually think I have a pretty awesome body, and I'm in awe of what it is doing in creating this new life. I have gotten a few stray comments about my changing figure, but I've brushed them off - I could care less if my colleagues are sitting around discussing my hips or whatever. I am much more sensitive about my actual health issues and I'll be furious if I find out that they're discussing my C-section or my perineal tear or my future conception plans or whatever. The obvious solution here is not to give them any of that information, but neither did my coworker, and it didn't stop the gossip.

- I am (deep breath, Charlotte) scared that these people - who are nice, and who I see every day, but who are really just acquaintances - are more excited about my baby's eventual arrival than I am. I'm excited... right? Sure I am. A moderate amount. An amount that still protects my emotional health in a precarious situation. An amount that sometimes, on good days, counteracts the absolute dread I feel about having to make it through the weeks and months and years ahead - dread about waking up one morning in a puddle of blood, about labor and delivery itself, about leaving the hospital with an infant who will be dependent on me for literally all of his needs even in a best-case situation, about still having to deal with endometriosis and infertility when this pregnancy ends. And my coworkers will inevitably boil this unbelievably complex situation down to: baby! Hooray!

So, basically, I took something that was not at all about me and freaked out when I started projecting it onto myself and my experience. And I should say that I'm truly, genuinely happy for the new parents on so many levels. If it were just about them, and I had heard their news in a different environment, I wouldn't have given it a second thought. I was unsettled by this experience because it seems like a dress rehearsal for my own future, which I see as very cloudy. I wish them the best.

You've Got to Ac-Cen-Tchu-Ate... Oh, Shut Up.

I'm not feeling so great today.

I mean, I'm fine physically. My morning sickness is diminishing every day to the point where I routinely get hungry before I get nauseous. I'm tired, but no more so than usual. In terms of aches and pains, the biggest thing I have to complain about is a totally unrelated blister on my foot (darn you, cute shoes!) Honestly, if it weren't for the belly that's getting harder to cover up every day - and which I keep spilling soup on - it would be possible to actually forget that I'm pregnant. In fact, these past few days have been downright boring, symptom-wise. And boring is good, because boring is normal, normal is not traumatic, and not constantly experiencing traumatic events means that I have a fighting chance of getting back to the person I was before this whole crazy mess started.

Yesterday was a different story. It was far from the worst-case scenario, but the news of my placenta previa just kicked me right to the curb again. The pattern of my behavior is roughly: feel happy ---> see doctor/find out something is wrong with my body ---> plunge into crippling depression ---> over a long period of time, start gradually feeling better ---> feel happy ---> see doctor/find out something is wrong with my body ---> etc. This problem was greatly compounded during my IVF cycle by a negative experience with my egg retrieval procedure, which made me feel like the medical staff who were telling me all these bad things about my malfunctioning body were not in fact kind people who were doing their best to help me, but rather judgmental, heartless cogs in a reproductive endocrinology assembly line that was processing patients with approximately the same level of care that Henry Ford used on his Model Ts. (Okay, that was harsh. What I mean to say is, Henry Ford used way more care on his precious horseless carriages than I felt my RE's office did during my retrieval. I'm still really pissed that they took what was already a bad situation and made it worse, and no, obviously I have not gotten past it yet.) Everyone I interacted with yesterday was very kind, thorough, and optimistic that we will ultimately have a good outcome. That's wonderful, of course, although it also makes things a little harder to wrap my head around because when I look back at the totality of my experience since my diagnosis, there's no one villain that I can point to and say "You! This is your fault!" There's no mustache-twirling Giver of Infertility who I can fantasize about punching in the face. There's just bad luck, and good luck, and I have no way of predicting which one will finally tip the scale.

Anyway. I could start linking to a bunch of research I did yesterday about complete placenta previa and why I'm slightly mystified that my doctors are so pessimistic that mine won't clear up before delivery (many do! really! and they are quantified in peer-reviewed studies that are published in major medical journals!), but I think I'll save that for another day. My guess is that I'll start to feel better slowly over the next few days and weeks, right up until my next appointment can tell me that the baby is eating my lungs or shaped like a dragon or something else equally unpredictable and horrifying. We'll have to see.

Coming soon: My contribution to NIAW! Telling friends I'm pregnant! Maternity pants deliberately worn to a burger place for maximum food consumption!

Rose! Hyper on Two!

(If you can name the movie I'm quoting above, you get a gold star.)

Today was my extra-special crazy-lady appointment at my RE's office (with a bonus unscheduled appearance from my RE himself!) to talk with the nurse coordinator about my concerns regarding egg retrieval. I will admit, embarrassingly, that I do feel much better now that I've voiced all my worries to somebody and seen the procedure room and been assured in no uncertain terms that this will not be agony and if it is, they'll stop. Sigh. The Ativan prescription I picked up probably won't hurt either.

The only thing that continues to bother me is that when I related my friend's story about trying to take her feet out of the stirrups but being prevented from doing so by an additional drug being pushed into her IV, the nurse's reaction was immediately that it had never happened or if it did, it didn't happen exactly that way. I mean, it's hard for me to get all indignant about it because it's not my story, but I really don't think my friend is lying and even if she is mistaken about the details - this is what their former patient perceived to be her experience at their clinic, and it was upsetting. Period. If I had a horrific experience at a doctor's office of any kind, I would tell them about it in no uncertain terms, but my friend isn't interested in doing that so I guess the matter will just rest here.

The other new development to come out of today's meeting is that my RE asked if I had 5 minutes free to meet with him to go over the calendar for my cycle - believe it or not, we are pushing back my start date for Follistim AGAIN! This time it's because my RE has to be out of town on what would have been my retrieval date. I can stay on the leuprolide acetate "indefinitely" (it's similar to being on Lupron Depot, which would last for several months, so two more days of the injectable stuff won't actually harm me - it just keeps me in a holding pattern until we're ready to start). Part of me feels like this is a stay of execution but another part of me just wants to get the show on the road already! Anyway, I am now starting Follistim on Sunday 1/15. With any luck sugar cookies will be involved.

Monday Morning was Almost a Relief

Hey, how was your weekend? Good? Glad to hear it. What did I do? Oh, well, I cried. I oscillated between sobbing → weeping → choking for breath → welling up during an otherwise normal conversation → doing the "ugly cry" → screaming into a pillow → sniffling behind my sunglasses in public → curling up in the fetal position on the floor. (Oh, but I did watch Downton Abbey.) I am literally hoarse today and have a sore nose from all the crying. I also got about 10 hours of sleep total between Friday night and Monday morning, because I just couldn’t stop my brain from obsessing – it finally took two antihistamines and a dramamine to knock me out at 4 AM on Saturday.

This whole “we only plan on relieving 80% of your pain during egg retrieval” thing has just opened up the floodgates on my emotions relating to IVF, and none of them are good. Let’s try to break them down one by one, just like we did with the takeout bag of medications:

1. Anger.
I don’t know why this is missing from so many of my fellow IVFers’ blogs. Aren’t you angry that you have to do this? Am I really the only one who feels this way? I titled my blog the Reluctant Infertile, but what I should have written was the F*cking Furious Infertile. I wish I could say that although my diagnosis was intially upsetting, I managed to come to terms with it and now have a positive attitude towards treatment, but this is just not true. A terrible thing has happened, and what I want to hear from my doctor is that he will do everything in his power to help me and make me as comfortable as possible, not “this is what we offer and if you don’t like it you’ll just need to find another doctor and pay out of pocket.” Why don’t I deserve 100% pain relief during surgery, huh? Why are you subjecting me to anything more than the bare minimum?

2. Self-Loathing.
You know, I probably do deserve this. I’m sure I’ve done something to cause my infertility and I don’t know why they’re bothering to relieve my pain at all. And Harry? Harry shouldn’t be part of this process at all. Harry is fine and fertile and he would be so much better off if I were just out of his life entirely. He could find someone else and be happy and procreate naturally and never have to wake up in the middle of the night to find his wife doubled over next to him in bed trying to sob as silently as possible because she can’t perform the most basic function of making another human.

3. Fear.
One unpleasant surprise from Friday’s scan is that although my ovaries are resting just fine under the influence of the leuprolide acetate, the endometriomas that caused this problem in the first place have already recurred. The one on my left ovary is actually big enough that it’s borderline whether I can go through an IVF cycle at all, and although my RE wants to proceed with this one because, he says, “we just can’t keep doing more surgeries on you,” my plan of doing one cycle and then taking off a few months to assess my options if it’s unsuccessful has gone out the window. At one point I thought there might be some light at the end of the tunnel – come Feb. 1, if I’m not pregnant, I’ll hopefully have some frozen embryos in the bank and I’ll be able to take a break from the crushing depression of infertility for a few months while we gear up for another cycle. Now it looks more like an unsuccessful cycle will end with another, more aggressive surgery, or a round of more aggressive hormone therapy, and both options are just so unpleasant to contemplate it's ridiculous.

Conspicuously missing from this list, you may notice, is any mention of excitement that the cycle might actually be successful and I might get pregnant at the end of it. Yeah. For a few weeks there I was reading stories about people’s joy when they discovered they were expecting, and thinking that this whole baby thing was pretty great, but I’m just so upset right now I can’t see straight. Oh, and in case you were wondering about my last post, the official word is that Harry is not allowed in the room during my egg retrieval. And because of the way my insurance coverage is structured, this is the only clinic that they will reimburse for my IVF expenses – remember when I said that I had a very generous four cycles covered? There’s a catch, and this is it. I have until Friday to figure out some kind of plan.