We're sorry that this happened to you, and we're here to help

That's what I wanted to hear when I found out that my endometriosis was extensive and my Fallopian tubes were blocked. I really thought that someone, somewhere along the way, would say it to me. Or I thought they would say it in their actions, kind of the way all of the oncology doctors and nurses kept telling my mom about how much they wanted to help her manage her side effects during chemo, there were support groups she could go to, and had she received the shawl that a local survivor knitted? From the moment of her cancer diagnosis, everyone she interacted with was unequivocally supportive, and when I got my infertility diagnosis, I naively expected the same.

I never heard the phrase above, or anything like it. I heard other things that my doctors seemed to think were helpful: don't worry about whether you get right back into ovulating after surgery, "we can make you ovulate, that's not a problem." I really wouldn't worry about egg retrieval, "we'll probably relieve around 80% of your pain." Oh, you're feeling anxious while you're lying on the table about to start your retrieval? Well, let me point out this machine, "it might make some beeping noises but don't worry, everything is okay." I understand that your belly is in agony and you haven't been able to eat anything for days, but "it's normal to have pain after retrieval."

I've spent tons and tons of time thinking about this, and I think there was at least one really big disconnect between me and my doctors: what I saw as a tragedy, they saw as an opportunity, and later as a triumph. They skipped right over the part where I was trying to process the idea of myself as a sick person - of course I was sick, otherwise I wouldn't be seeking out their help, duh - and jumped right to the treatment they thought would solve all of my problems in one fell swoop, regardless of how invasive and life-changing it might be. Endometriosis recurs and worsens when left to its own devices, and my best options to keep things dormant after surgery were birth control pills, Lupron injections, or pregnancy that was only achievable through IVF. I had been trying to have a baby without success for almost a year, right? Well, now there was a really obvious reason explaining our lack of results, and the pregnancy would be beneficial to my body overall. And then! Then I got pregnant, first try, single embryo transfer! My IVF cycle was a success! They were happy for me, and I wished I could be happy too. But the whole time this was happening, I was driving home after work every day trying to see the road through tears, waiting until I got home so I could go upstairs, lie on the bed in the dark, and really sob. Something was terribly, deeply wrong with me, no one seemed to care about me or my needs when there was this potential-but-then-actual pregnancy to consider, and every time I was confronted with someone telling me that the destruction of my body was good news or that the pain and discomfort I was experiencing during treatment was normal, I wanted to shout at them. Didn't they see? This isn't good! It's awful! And if it's normal, well, it shouldn't be!

The worst part by far - I can hardly type this - was that I kept thinking I would wake up one day and I would feel the overwhelming joy that I had always thought I would experience when I got pregnant. I did want children, really and truly. I grew up wanting them, my husband and I had always discussed having a family, and if you had asked me about my #1 goal in life, I would (and still will) answer "to be a mother." Some of the pain that got wrapped up in this whole mess was truly about infertility, though I know that my brief dalliance with the fear of never becoming a parent doesn't come anywhere close to the heartache that many other infertility bloggers have experienced. Much more of my experience, however, was about the lack of bodily integrity and helplessness I felt during a time of extraordinary physical and emotional vulnerability, and what I perceived as a lack of support for these feelings from almost everyone around me. I thank G-d for my son every day and he is worth every second of this pain, but oh, how it breaks my heart when I remember how I felt during his conception, gestation, and birth and I compare that to the joy and celebration he deserved.

Since this is my blog and I want to keep writing about the disconnects between what people said and what I heard, I'm about to take this normal-sized post and turn it into a MegaPost. TL;DR: I'm really upset blah blah blah. Now, to expand a bit on the examples above:

"Oh, don't worry about whether you're ovulating on your own, we can make you ovulate. That's not a problem."

My RE said this to me at our very first consult, when we knew I needed surgery to remove my endometriomas but we didn't yet know that IVF would be my only option to conceive afterwards. For the six months before this meeting, I had been diligently taking my temperature and tracking my cycles, and I was pleased to see that they looked pretty typical even though there had obviously been no results. I thought that was a good thing and an indicator that I was probably healthy. But during our meeting, my doctor only looked at my Fertility Friend printouts for a second before saying the above. I remember not knowing how to react - I think I went with a nervous smile. I was scared about the fact that I needed surgery in the first place, and I was clinging to any sign that my body wasn't as damaged as I feared. I suspect that my doctor was trying to be reassuring - "Don't worry Charlotte, even if your ovarian reserve is damaged then we have ways of getting around it!" - but the reassurance I was looking for was more along the lines of "That's great news, because it might make your treatment easier." Also: nobody is going to make me ovulate. I am going to take drugs to ovulate when and if I want to, thank you very much.

"The tubes were completely blocked. You'll need to have IVF in order to conceive."

This was my OB to me as I was lying in the recovery room after my initial surgery. He is an extraordinarily kind person, and I think he'd be horrified to know that when he said this, something within me broke irretrievably. I had thought, naively, that after surgery I might be "cured" of the endometriomas that had brought me there (as much as I could be cured of a chronic condition, anyway.) At the very least I expected to have bought myself some time to process the trauma of the surgery itself - the surprisingly upsetting knowledge that I had let strangers mess around in my vagina and in my body while I was unconscious - before I had to make a massive life decision about having a child. I knew there was a small chance they might have found cancer in me, and it was a big relief when he said earlier in this same conversation that all the tissue they removed appeared to be benign. But then he mentioned IVF, and he suggested embarking on it as soon as possible - given the timing of my cycle, it could even be next month! - and the general anxiety I had felt building in the weeks before my surgery crystallized into a very real, almost palpable, pointy-sided knot of fear. Holy shit, IVF, holy shit, holy shit. I have to do IVF and I have to do more tests and more procedures and let more people violate my body and what if it works and I actually get pregnant and then I need even more exams and procedures and I have to give birth and somehow take care of an infant while I feel so unbelievably terrible about myself?

"I wouldn't worry too much about egg retrieval. We give you a local around the cervix and then we only have to puncture the wall of the vagina twice, once on each side. There aren't many nerves once we're in the ovary and most people aren't too bothered by it. We'll also give you versed and fentanyl, and that will probably relieve around 80% of the pain."

This was my RE to me, in his office in early January when we were going over the plans for my IVF cycle, and the memory of this conversation was and is so upsetting to me that it's taken days to type it out. I know he was aiming for reassurance. And on the surface of it, look at all the things he's offering me! Local anesthetic, minimal vaginal punctures, systemic analgesics, and the experience of other patients who said it wasn't that bad. But this conversation marked the moment that my anxiety and guilt about infertility and IVF first turned into anger - anger that was initially directed toward my doctor. I think I stopped short of pounding my fists on his desk, but I definitely raised my voice. It wasn't good. The 80% thing threw me for a loop in particular, because it felt like a calculated judgment - infertile people only deserve partial pain relief. Because this happened to you, because you got endometriosis and it permanently damaged your body, you are now marked for extra suffering. Other people conceive by having an orgasm, but you, you we're going to torture. While you are awake. So you get to remember it. And it's not like I had this conversation in a vacuum, never having heard of egg retrieval protocols at other clinics - for better or worse, reading so many other infertility blogs had given me a general idea of what to expect. People kept talking about their "anesthesiologists" and "going to sleep," and at first I was simply surprised that my clinic did things differently. Then another patient at my clinic warned me that she had found this procedure very painful, so when it came time to discuss the actual details of my cycle with my doctor, I suggested that it might be comforting to have my husband in the room. My doctor countered with the statement above and denied my request to have my husband present. I would chalk this one up to another miscommunication - the things I would have found reassuring just weren't the things he happened to say - but the reality is that he offered me everything his practice could provide (they don't have the ability to administer propofol, which many practices use in their sedation so the patient has no memory of the procedure, and they don't allow family members in the room according to their policy.) And the repeated suggestion in this conversation and others (see below) that I was the outlier, that their other patients handled it better, meant that all the anger I felt started to turn inward toward myself.

"Now, I'm going to hold your hand, okay? And I know you're feeling anxious, so I want to make sure I point out that machine over there. It's got lots of buttons and it's going to make some beeping sounds, but I don't want you to be nervous, it doesn't mean anything bad. It was probably designed by a man, they don't always understand that these things can be annoying."

This was the nurse coordinator at my IVF clinic, with whom I met prior to my retrieval as part of the fallout from when I "expressed my concern" to my RE (see above.) After the not-very-productive conversation we had where she tried to reassure me about the procedure in advance but ended up getting pretty defensive, I suspect that she made sure that she personally would be the nurse holding my hand throughout in an effort to help mitigate my concerns. This was a really, really nice gesture... except that the things she wanted to reassure me about were entirely not the ones that bothered me. I remember that as I lay down on the bed and put my legs in those awful, awful industrial-strength stirrups, she made a point of showing me the equipment in the room. She mentioned that some of it would beep occasionally and said that it was likely designed by a man, which, what? What does that have to do with anything? And also - I am freaking out because I am about to have a gigantic hollow needle shoved up into my vagina so my flesh can be sucked out of my body, not because there's an infusion pump in the room! I know she meant well, and I know that there wasn't much positive news she could tell me about the giant needle, so she was trying her best to demystify everything else. Except I didn't need it demystified - I mean, even if I didn't have any professional connection to medicine, I still live in North America in 2013 and use a computer and carry a cellphone and I've installed smoke detectors in my home, so things that beep aren't exactly a tremendous mystery. What she thought was helpful, I thought was condescending.

"Hmm... yes, I remember Dr. X saying that he punctured an endometrioma during retrieval, but that shouldn't have much effect on your recovery. It sounds like the pain you're describing is normal."

Same nurse. Still condescending. Let me back up a bit here - when my RE punctured my endometrioma, it was by far the most painful part of my retrieval. I continued to have significant belly pain while in recovery, which seemed to surprise the nursing staff. I spent the next three days trying to remain as still as possible and eating next to nothing, because every time I had any kind of movement within or outside my belly it was like having bad endometriosis cramps. I'm talking about rationing the water I drank so I didn't have to walk to the bathroom any more than the bare minimum. At this point I was about 3 months out from my laparoscopic surgery so the memories were very fresh, and I remember thinking that the recovery experiences were about equivalent - except that with my IVF cycle, I couldn't take the strong painkillers I had taken for my surgery, and I didn't have the days off from work. So when this nurse called me the Saturday after my retrieval to ask how things were going - a very nice thing to do, especially on a weekend! - I was past the worst of it, but I did mention that I had been in a lot of pain, perhaps because of the punctured endometrioma and the fluid that was released into my abdominal cavity? She was pretty dismissive of my theory and said that the pain I had felt was normal. Again, she might have meant well (and I could easily have been wrong about the endometrioma puncture and the two things were unrelated) but instead of feeling reassured I felt like I was being chastened for complaining.

None of this was a major problem, really. People have miscommunications all the time. Even with everything that happened where I felt like I was completely alone in my suffering, completely at fault for my diagnosis and my reaction to treatment, I think I would have moved on long ago if it hadn't been for my memories of the egg retrieval itself. That's the experience that keeps replaying itself when I close my eyes to go to sleep at night. It's what I think about when I get up in the morning - you know how sometimes you wake up and you can't quite remember something really big? And then the memory comes flooding back and you think, that's right, I did get a raise yesterday! That's what happens to me every day. I wake up and everything seems okay until I remember: stirrups, low lighting, surgical scrubs, you let someone do this to you. I'm varying degrees of functional throughout the day depending on how distracted I am - sometimes I'm fine, sometimes I'm sobbing. But when it's time to go to sleep at night, I fight it for as long as I can because I know that in the space right before unconsciousness I have to see everything again. There's no distraction at that point - just me, looking at my doctor's eyes above his surgical mask and below his cap, trying to be friendly as he waves at me from between my splayed legs. Over and over. Every day is the day of my egg retrieval, so every day is the worst day of my infertility journey. It just. Doesn't. End.

Trauma, Recovery, and IVF

When I was sixteen, I went through a tough event at high school. I won't get into the details here except to say that it taught me one important life lesson. That lesson was that there is no cavalry coming. No one is going to save you. You are responsible for saving yourself. Bad things happen and even if you played no role in causing them, that doesn't matter. There won't always be justice and the people you trust to protect you won't or can't help you when you need them. As Blazing Saddles illustrates, son, you're on your own.

That traumatic event is connected to my recent departure from the blogosphere. (And let's just pause for a second here to acknowledge how very small my corner of the blogging world is: I do have a handful of regular readers, but most people who visit my blog are searching for pictures of my pregnancy tests so they can compare them to their own; sorry, guys, for letting you all down. Hope you found someone else's urine to look at.) It's connected because in both cases I felt completely blindsided by a tremendous life change, I looked to people in positions of authority for help and comfort and didn't find it, and it took a very long time for me to recover psychologically. That's how I feel about my infertility diagnosis and treatment experience, from the distance of almost two years: it was a trauma. A huge, life-altering trauma that still has me floundering.

To bring you up to speed, here's a brief synopsis of events that have taken place since O's birth last fall:

October: Have baby. Labor and delivery go pretty smoothly and we are blessed with a healthy, adorable, bouncing baby boy. I notice that I have a few weirdly obsessive nights where I keep thinking about the birth, and it takes much longer to feel physically "recovered" than my doctors predicted, but I move on to focusing much more on my delicious little newborn than my IVF cycle, my pregnancy, or my delivery.

December: 6-week followup appointment with OB. Have promising ultrasound showing no major endometriosis-related problems, decide to start the mini-pill, generally feel optimistic about life.

January: Go back to work. O starts daycare, immediately gets a series of minor colds and coughs, and everyone's sleep and commuting schedules suffer. Still, as the days get longer and the sleeping arrangements get back on track throughout the spring, I continue to feel pretty great.

April: Find out that the events of the past year and a half have had external consequences that I genuinely didn't see coming. Memories and anxiety that had previously been held at bay come flooding back. Another ultrasound shows that my endometriosis is about as quiet as I could hope, but it doesn't matter, because everything else is completely falling apart.

June: Find out that our current insurance plan - the one that covers four cycles of IVF at one clinic and one clinic only - will be ending in June 2014. Would we like to have another child between now and then?

July: After a tremendous amount of discussion, agree to see a therapist. Spend 45 minutes of a 60 minute appointment grilling her on her treatment style, philosophy, approach to patient care, and make her agree to send me a copy of her notes. Tell her the digest version of what's happened in my life since 2010 and she makes some sympathetic noises. Three weeks later she actually does send me the notes, which thankfully are unobjectionable but are also completely unhelpful. Decide not to return.

August: Go for appointments at two different fertility clinics. Clinic 1 is where we went for the fresh cycle that created O and where I left my egg retrieval feeling utterly destroyed (a feeling I re-experience daily and which generally leaves me sobbing and gasping for air, but which seems weirdly right when we actually have to walk into their building again.) Clinic 2 is brand new in every sense of the word - their offices are still partially under construction, even.

Here's what we learned at Clinic 1: they consider me a success story, what with my single cycle of IVF and my single embryo transfer and my term birth and my (if I do say so myself) utterly gorgeous son. The conversation takes a bit of a turn when I mention that I think about my egg retrieval all the time, I'm completely haunted by the memory of it, I'm generally miserable, etc. etc. Our RE is sympathetic about my bad experience and understands why I would choose to go elsewhere for further treatment, but it's clear that the financial implications of my insurance coverage are not his area of expertise. We talk about how to transfer embryos to another clinic if need be. We also talk about what would be involved if I chose to somehow get past my earlier experience and have a Frozen Embryo Transfer (FET) cycle with them. It's nowhere near as invasive as what I went through before, obviously, and they even say they prescribe Crinone for progesterone support so I wouldn't have to do those vile progesterone-in-oil shots. And to his eternal credit, right before the end of the appointment, our RE does admit that "we tried not to hurt you, but it sounds like we did hurt you a little bit, and we're sorry about that." I leave feeling like we repaired the relationship quite a bit, but part of me wished that I had abandoned RationalCharlotte at the door and taken advantage of the opportunity to scream and curse at someone who was "responsible" for all of my unhappiness. Except I didn't, because he isn't. And while I was sitting in his office and during the weeks following our visit, my anxiety level has continued to be through the roof - especially when I think about even stepping foot in that building again.

And here's what we learned at Clinic 2: they will knock me out during egg retrieval if it ever comes to that (which it probably wouldn't, because that would be very tough for us to afford just paying cash, but it's still the first question I asked.) They're willing to accept a transfer of our frozen embryos and work with us on a FET. They too are sympathetic about how upset I've been - maybe I'd like to try some valium before a procedure, or investigate acupuncture, or join them for Fertility Yoga on Tuesday nights? The price tag for a FET without insurance coverage will be steep but not prohibitive. However, they do use progesterone-in-oil shots, and the minute I hear this the whole world seems to dim for a moment. Those needles are long and thick, injecting them into my ass is humiliating, the process as well as the aftermath is painful, and my heart rate skyrockets when I so much as think about the shots. And even in a new space, with new faces, the mere discussion of what's involved in infertility treatment is enough to make me feel completely terrible.

So, what do I do? Start blogging again, it seems. Other than that I have no idea.

How I Learned to Stop Worrying and Love My Induction

So - we're there. Despite a few positive signs that my body is considering going into labor on its own, the time for my induction is almost at hand. Not that long ago I would have fought an induction tooth and nail because I wanted to do everything as naturally as possible, but that has changed, because of one giant reason:

By inducing labor in the hospital, I get to have the same pain relief options as a woman who isn't on heparin - up to and including an epidural.

For the past nine months, I've been worrying about being in agony during labor while doctors and nurses deny me pain relief. I think I would have always been worried about this, but after my experience with my egg retrieval during IVF, it became an obsession. The idea that I might be told (for very good reasons!) "no, we can't give you an epidural right now" was bringing back all of the panic, anxiety, and anger from back in January. There are plenty of things that can still go wrong with an induction, but complications from an ill-timed heparin shot at home won't be one of them. I get to concentrate on meeting my baby instead of worrying about his birth, and that is a gift that has absolutely no price tag.

Catch you on the flip side!

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?

Good Morning! I Have Tiny Arms!

We had another ultrasound this morning and everything looks wonderful. The embryo, who I am told will graduate to "fetus" on Thursday when we hit 10 weeks, is 28mm long and was waving around tiny, hilarious T. Rex arms. I do have a picture, but because it's so grainy (and frankly it looks like every other 9 week ultrasound that you might care to google) I have attached this helpful graphic highlighting our unborn child's dominant physical characteristics:

We did hear a heartbeat but stupidly forgot to ask exactly what it was... oh well. My RE said that everything looked perfect for this stage of development. We are so, so grateful for this news. From here on out, I won't be seeing him but will go to my regular Ob-Gyn for obstetric care as well as visiting the high-risk Maternal-Fetal Medicine specialist occasionally to follow up on this whole DVT issue.

Because this was my last meeting with my RE for what we hope is quite a while, it was also my big chance to talk about my experience with egg retrieval. The conversation went pretty well, all things considered (definitely better than when I brought up my concerns with him initially, and way better than the time I told my Ob-Gyn that I wouldn't take the birth control pill because "this is America, dammit!" Note to self: if you are using the phrase "this is America" to bolster your argument, you have already lost.) Anyway. I said that while we were so thankful for such a positive outcome, the hardest part of this pregnancy has been trying to reconcile my joy at becoming a parent with my horrible memories of how our child was conceived. I was a bit surprised that he immediately agreed with me that more pain relief should be offered, and he even gave some examples of other gyn procedures totally unrelated to IVF that are only performed under anesthesia even though they're considered less invasive than egg retrieval. But... it's not within his power to change their policy, and without going into too much detail, he summarized some of the reasons why the senior doctors in the clinic set it up this way. I reiterated that I didn't feel at all as though he personally had given me substandard care - in fact I think he has done a great job and I intend to go back to him in the future if and when we try for a sibling with our three frozen embryos - but I offered to write a letter to the head of their practice describing my experience in case this issue ever comes up in the future. He said that might be a good idea, and now I'm trying to decide how much of a squeaky wheel I want to be. On the one hand, everybody got what they wanted out of this cycle, clearly the majority of their patients find the service they provide to be acceptable since they're not exactly going out of business, and I'm not often inclined to rock the boat. On the other hand, I do think their policy to go with minimal anesthesia for egg retrievals puts women through unnecessary pain and suffering during what is already an incredibly difficult process. So, I'll be thinking about this one.

For today, I want to focus on our good news. In fact, this is my new policy overall - I found this (unattributed?) quote online and I pinned it up by my desk so I'm looking at it every day. Good things are happening, and I hope and pray that they continue.

DVT Update and I Hate Being Sick

This morning I had my first appointment with a Maternal-Fetal Medicine doctor who specializes in blood clots. I actually set up this meeting precisely one week after my transfer - three days before my first beta hCG test would ordinarily have been done - and I kind of wonder if that's some sort of record. Congratulations, you have literally only been pregnant for a week, and it's off to the high-risk doctor!

There was good news and bad news from the appointment. The good news is that he was really optimistic about my pregnancy in general, despite being surprised that I hadn't yet gotten an ultrasound to confirm. (Ummm... it's on Friday?) He said that my beta hCG values had doubled right on track for a singleton pregnancy and my fatigue and nausea were signs that everything was proceeding normally. He also said that my thrombophilia bloodwork had come back showing NO genetic mutations and that all my levels were within normal ranges, so it appears that I don't have any inherent predisposition towards clots. Great!

The bad news, and I think he didn't really consider it bad news but I sure did, is that if he had to guess right now then he would expect that I will have to stay on the Lovenox right through the pregnancy and six weeks after the birth. He mentioned that at 35 weeks or so, I'll probably switch to Heparin so they have more options (epidural, C-section) during labor and delivery. If I need emergency surgery at some other point during the pregnancy, that could get interesting because it takes ~24 hours to get Lovenox out of your system, though of course it's low odds that something like that would happen and they would weigh the benefits and risks at that point. Additionally, they don't like to see ladies with clotting problems go past dates, so he said that there's a chance I would be induced between 38-39 weeks... I have two responses to that: 1.) I wake up every day thinking that I've miscarried, so let's just hold off on all the labor and delivery plans for the moment, mmkay? and 2.) I'm not inducing. I mean, never say never, but induction to me is a last-ditch, everybody-is-about-to-die, this-is-an-indication-of-huge-problems kind of option. My experience with the world of obstetric and gynecological medicine to date has pretty neatly illustrated the problem that one intervention leads to another problem which leads to another intervention and so on. The link between induction of labor and increased complications (including a higher C-section rate) is pretty well established, but this is a battle that I'm just going to wait to fight on another day.

All of this is essentially fine, although I'll feel like less of a fraud when someone confirms using ultrasound that there really is a tiny human living in my belly. So why did I burst into tears in the parking lot after the appointment? Here's the problem. If I think about the baby, I am flooded with gratitude and humility. But then I think about what my husband and I had to do to get here and the rage that simmered in me throughout the past few months - with occasional, and notable, moments of boiling over - just comes back full-force. The news that I'll probably be on the Lovenox until 6 weeks after delivery (for those of you keeping score at home, that's nearly a full year of painful, bruising, daily self-injections) was really upsetting to hear. My Lovenox bruises are a visible sign that something is not right with me. It doesn't take a genius to read what I've written to date and realize that the most traumatic parts of this experience were when I was most actively being treated for my infertility - the initial surgery on my ovaries, the start of injecting myself with leuprolide acetate, my egg retrieval procedure, my DVT diagnosis, the constant blood draws to check my hCG level. Now I have a messed-up pregnancy, too. I am deeply bothered by the idea of illness and being an ill person, and a lot of this probably stems from the experience my family went through recently with my mother's cancer treatment, but I'd venture to say that it's also pretty common. A lot of the literature on chronic and terminal illness mentions this feeling among patients, and the most vivid description I can find is what Susan Sontag writes in Illness as Metaphor:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. Read more here.


So every night, when I inject the Lovenox, I feel like I'm being kicked right back into the kingdom of the sick just when I was starting to think I might be able to live back in the kingdom of the well for a while. I start thinking about how I'm never going to be able to show off a baby belly and I'm probably going to have to do this right through New Year's Eve for 2013 and, you know, I still really want to tell my RE how much I hated my egg retrieval procedure (I'm concerned that now that I'm pregnant, all of our interactions are going to focus on my pregnancy and I'm never going to have a chance to tell him what my experience was like and how, frankly, I was right to worry and feel that I was justified in freaking out on him ahead of time.) I had hoped to move on from all of this unpleasantness, but no, it's still going on. And realistically, it may never stop - welcome to the world of chronic illness.


Still, eye on the prize, right? I like to sign off on a positive note, so I will say again how grateful I feel to be pregnant right now. I have felt a frisson of excitement for the future here and there - during the worst moments of morning sickness I've even started distracting myself by bookmarking cute maternity clothes online, but that's a story for another time. Keep your fingers crossed for a good report on Friday!

What Happened, Food? I Thought We Were Friends

Not burying the lead: all 12 embryos have survived to fight another day. The clinic is planning on a day 5 transfer.

That's the good news. The bad news is that while I had planned to write a chirpy little post about how I was trying to increase my protein intake to avoid  Ovarian Hyperstimulation Syndrome (OHSS), I ended up having a really rough night with the belly pain. I ate an actual meal last night for the first time since Wednesday's nauseapalooza, and I think my GI system did several backflips when it realized it had something substantial in it. I'm sure the doxycycline I'm taking isn't helping matters either. Now I'm racking my brains for ways to increase my protein intake without writhing on the couch for hours - I had a single piece of toast with peanut butter this morning and so far so good. I also brought a high-protein shake to work and it's sitting on my desk, where I am staring at it with apprehension as though it's about to jump down my throat of its own accord and start causing trouble in my tummy.

I mean, at some point my belly has to stop hurting, right? Until then, I'm just going to have to tread carefully and eat whatever I can manage to eat. And I'm also wondering if more dietary protein to avoid OHSS is a good idea at all, since I'm having trouble finding a professionally authored study on this, even though it's all over the infertility message boards as accepted post-retrieval advice. (If you have hard data to back this up, please let me know.) Either way, Gatorade, ginger ale, and Saltines do not a balanced diet make, so I've got to start mixing it up.

A Painfully Detailed (Ha! Get It?) Description of my Egg Retrieval

First things first: 16 eggs, 12 fertilized naturally with IVF (no ICSI here.) I will find out my transfer date tomorrow.

At 6 AM yesterday (oh, who are we kidding, I was actually up tossing and turning starting at 5) I got up and headed over to my clinic. This was the first time I arrived right when they opened, and it was like a scene out of a play: the curtain opens outside the door to a fertility clinic. A dozen people stand outside in perfect silence, desperation and resignation written on their faces. None of the women look younger than 35 and no one smiles, either to themselves or to each other. If there is a sisterhood here, it is a sullen one. The door opens: wordlessly, everyone forms a single-file line and heads in.

Surreal. Anyway, once I finally got in, it was the usual pre-procedure drill: confirm my name and birthdate a few thousand times, put on a bracelet, sign the consent forms, change into the hospital gowns and grippy socks. I did find that after all these injections, I no longer get squicked out about watching needles go into my skin, so I watched the whole time as the nurse put in my IV (and saw the giant bruise start to form that I just knew was going to happen.) I took a single pill of Ativan and she had me wait on a gurney and gave me a magazine at random - the issue of Lucky where Elizabeth Banks describes her struggle to get pregnant and eventual decision to use a gestational carrier. I read the article and tried to think to myself, this is okay, Elizabeth Banks did this, you can do it too.

But as much as I'd like to just keep asking myself WWEBD (What Would Elizabeth Banks Do?) and act accordingly, I bet that she had actual anesthesia for her retrieval. Which brings me to the part of my story where I was totally right to be concerned about the conscious sedation. Don't worry, I'm not experiencing post-anesthesia PTSD or anything, but damn, I felt everything. After getting my legs in place and draping over my personal region, the nurse hooked up my IV to a syringe of Fentanyl. She sat on my left side and took my left hand in hers and put her right hand on the syringe. She explained that she was going to hold my hand the whole time and push the Fentanyl with her other hand as needed - um, okay. It was weird to hold a stranger's hand, but then she pushed a small amount of the Fentanyl and it was like getting drunk very quickly: sure, I'll hold your hand, especially since you're buying this round! She started asking me questions about my siblings and I knew that she was just talking to me to distract me, but at that point my RE came into the room and I was glad to have something to focus on besides what was going on in my vagina. Which was: two burning pains from the local anesthetic as it was injected on either side. A prolonged and sharp digging sensation as he worked on my right ovary and then the same thing on the left. The really bad part was when he said "so, in order to get these last two eggs, I'm going to have to puncture the endometrioma. Okay?" I said okay, and then as he stabbed it, I squeezed the nurse's hand really tightly in spite of myself. It felt like, well, being stabbed! I was still with it enough to feel him do the mock transfer (which appeared to be just putting a catheter into my uterus and wiggling it around for a second under ultrasound), but after that I have no memory until I was laying on a gurney in the recovery room with an IV of antibiotics going into me. I don't remember whether I walked to that gurney, which honestly bothers me more than the memory of the pain itself - I really don't like knowing that I was walking and talking with no knowledge of what I said or did.

This is the other strange thing: once I was in recovery, the pain began to really mount. It started around a 1 or a 2 on a scale of 10, but kept building until I described it to the nurse as more like a 4-5. I was starting to panic because they were saying things like "maybe you'll be out of here in a few minutes" and I didn't know where this was going to level out and didn't want to find out the hard way, and the nurse said the only thing she could do was push more Fentanyl, but that would delay our departure which apparently they didn't want to do. I mean, it kind of seems to me like I shouldn't have had to bring my own drugs to the clinic, but eventually they settled on having me take some of the Percocet that I had been given after my surgery in October that I brought with me just in case (once a Girl Scout, always a Girl Scout) which then made me predictably nauseous - somehow we managed to drive home with the help of a pillow cushioning my belly from the seatbelt and one of those kidney-shaped containers in case I ralphed in the car.

I spent the rest of the day in bed trying to figure out whether the pain or the nausea was bothering me more, though the winner became pretty clear when I started repeatedly throwing up.  I finally got some soup in me around 8 PM and took my doxycycline and medrol around 10 when it seemed like things were going to stay down. I slept okay last night and am back at work today with a bottle of extra-strength Tylenol and a heating pad strapped discreetly beneath my sweater - in an ideal world, I'd have taken today off, but I just don't have the time. Besides, it's better than waiting around at home obsessing about the 12 embryos in a lab across town that contain genetic material from both me and Harry (a very weird concept, but frankly, I'm thrilled that they have a babysitter today because I am just not up to childcare in my current state.)

So that's where things stand - if you've been reading some of my earlier posts, you will know that I harbor no small amount of anger about having to undergo the physical pain and trauma of IVF. Now that retrieval is behind me, I do feel some relief, although as I get farther and farther away from the pharmacologically induced relaxation of yesterday's sedatives, I am seriously considering changing clinics for our next attempt. Other bloggers have described how nice it was to feel the drugs knock them into unconsciousness before any needles were taken to their ladyparts, and I've seen lots of terms like "Operating Room" and "Anesthesiologist" thrown around. My retrieval was in a slightly-larger-than-usual exam room - definitely not an OR. And the highly scientific hand-squeezing technique that the nurse used is, I'm sorry, no substitute for a heart monitor or an EEG to measure pain response. I had real surgery recently, and this was no surgery. This was an in-office procedure that is routine for their staff but not to the patient, and while many women may feel that this is an acceptable level of pain to achieve their dream of becoming a mother (or simply don't realize that they have a choice), I just don't agree. I'm not going to make any decisions now, but Harry and I will have a big talk about our next steps at some point.

On another note, I have to send some love out to AJ, who had her retrieval yesterday too; to Emily, who is planning out the next stage of her journey after getting this week's IUI results; and to Blondie, who is currently incubating the cutest lil' blastocyst. I hope that all of you get good news soon.

"Trigger Shot" Should Be the Name of a Cocktail

First of all, Harry and I rarely refer to it as a trigger shot. We much prefer calling it "the kick" after Inception or even "the bounce." When I think of the words "trigger shot," this is what I picture:

(Duck hunt, anyone?)

In reality, this is what's about to happen:

Either way, I'm triggering ovulation tonight. Looks like the count is holding steady around 22 follicles, of which a handful are likely too small to be viable, but there's no sense in worrying about that now. I did remember to ask this morning about my most recent E2 number and it was 2319, which brought me much joy because of its association with Monsters, Inc., but I'm going to try to take my RE at his word that everything looks good and not focus on the details too closely. Retrieval will take place on Wednesday morning at 8:15 AM under a haze of Ativan, Fentanyl, and Versed. A heavy, heavy haze. A haze so thick I won't be able to see through it or feel anything or remember anything. Right? Right.

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.

Cycle Update and a Question

Lots of news this morning after my discussion with my RE - I will almost certainly be able to push the start of my stimulation to Jan. 13, which is good because it solves some scheduling issues for me. I'll write more later but first I have a question for my readers (yes, all five of you):

How does your clinic handle anesthesia for egg retrieval? If your clinic only offers conscious sedation, do they allow your spouse or another person to stay in the room with you?

I ask because my clinic does not offer general anesthesia for retrieval, only Versed and Fentanyl for conscious sedation. My real-life IF friend who has been to this clinic for retrieval twice said that she had two different experiences with them: the first time she was in agony for the entire procedure and basically felt everything, and the second time she was so scared of the coming pain that she actually started freaking out and trying to take her legs out of the stirrups before the procedure even began. At that point the doctor gave some signal to the nurse to push something into her IV and the next thing she knew she was in the recovery room. I want my retrieval to go more like her second experience than the first one, obviously, but my conversation with my RE on this topic didn't go very well. I reiterated my concerns about retrieval, he reassured me that I would be fine, and then I said (thinking that this would be no big deal) that I would appreciate having Harry stay in the room during the procedure seeing as how I would be conscious and all. That is apparently a major problem for them and they have never ever had a spouse stay in the room, or even had anyone ask for their spouse to stay, and the conversation just got worse from there. I tried to stay as calm as possible but I don't think I did very well, and now my doctor says that he'll have to check with some people and get back to me and if this is going to be a dealbreaker then I can't even start stimulation until the issue is resolved.

So, other women in infertilityland, would you mind weighing in? I know that some clinics do offer general anesthesia for retrieval, but others don't, and I have definitely read stories about people's partners being in the room during the procedure. This being the Internet, you never really know what's true and what isn't, but if I am way out of line for asking this of my RE then I'd like to know. Thanks.