Oncologist appointment

I met with the gyn oncologist yesterday. She agrees with the preliminary conclusion that I do not have cancer, which is fantastic. She is happy to do another scan in 3 months or so to check on the cyst, but unless I develop additional symptoms, she is not inclined to treat it with additional surgery. It's about the best outcome you can hope for when you head into an oncology waiting room.

However, as usual when doctors think they're delivering good news to me, I was a complete mess and spent a good chunk of time sobbing afterwards. Harry and I spent a bunch of time before this appointment talking about how one major source of anxiety for both of us is the lack of a plan going forward - we got this diagnosis of endometriosis and infertility in rather dramatic fashion, embarked on a traumatic IVF cycle and pregnancy right away, and our first year of parenthood has been punctuated by additional health crises like the one that had brought us to the oncologist's office. A huge amount of my unhappiness rests on the fact that I woke up from my surgery with an array of bad options to manage my endometriosis between now and menopause:
1. take the birth control pill continuously
2. take other hormones that would accomplish the same thing as the pill (probably Lupron Depot)
3. get pregnant as soon as possible through IVF, then breastfeed for an extended period of time
4. monitor me with routine transvaginal ultrasounds to see how quickly the endometriomas would recur to the point where I needed surgery again

Here's how I viewed those options:
1. feel generally terrible and pessimistic about life
2. feel generally terrible and pessimistic about life, with the likely addition of some unpleasant physical side effects
3. endure awful things happening to my body during IVF, pregnancy, and birth, plus I have to take care of an infant during the lowest time of my entire life, followed by the inevitable selection of options 1, 2, or another attempt at 3
4. live with anxiety between each uncomfortable scan, followed by the inevitable selection of options 1, 2, or 3 (plus or minus another surgery)

I was completely unprepared for the tidal wave of grief and anger that came over me after my diagnosis, as I have previously described. But what's amazing is that that grief and anger is as palpable today as it was two years ago, and I attribute that to the fact that I'm still at square one when managing the future of my body using the menu above... plus I'm grappling with the utterly terrible realization that the doctors and nurses who I thought would support me during this process are actually (to varying degrees, but still) indifferent to my suffering. Naively, I thought that one positive outcome of meeting with a gyn oncologist - whose practice does include patients with benign but complicated conditions including endometriosis - was that I might finally have found the person who was going to say to me "This is a very tough diagnosis, and we're sorry we don't have better news for you. But we are here to help you - please tell us what we can do." The doctor I saw was very friendly, but I suspect that when you spend your days telling women that they have cancer, it is completely baffling when the promising young patient in your office is visibly unhappy when you say she does not have cancer after all and she can proceed in her efforts to get pregnant.

I have to wrap this up because - no kidding - I have to go to the pharmacy to get the progesterone in oil shots that I swore I would never take. (Turns out that my doctor and I may have both had incomplete information when he told me in August that they would prescribe Crinone for a frozen embryo transfer cycle.) This is all I'm going to say: in case it wasn't obvious already, I am f*cking miserable. The last two years have been the most difficult of my life and I estimate I have another 20 years of the same before my body enters menopause. I am not going to survive that. I don't know how I can live one more second in this body, I don't know what I did to deserve this diagnosis, and I really don't know why no one wants to help me. If you resent me for saying this, well, the good news is that you couldn't possibly hate me more than I hate myself.

Someone... was nice to me?

Wait, what? A nurse at my fertility clinic just did something nice for me. Really, truly, she didn't have to do me this favor but she did and I'm all - huh? Stop that! What are you thinking? You're not nice people! You don't care about me! Your colleagues have f*cking told me on multiple occasions that this whole mess was my fault! You're not on my side, you're not my partner or my protector or my advocate, you think I'm an ungrateful patient who complains for no reason!

What happened was this: a few months ago, I was trying desperately to find a way to go back to Clinic 1 for a frozen embryo transfer without, basically, going back to Clinic 1. Even a FET cycle takes a lot of cashish, and I wasn't convinced that I was going to feel any less anxious at Clinic 2, so I tried to see if Clinic 1 would be okay with determining my treatment based on tests (such as the sonohysterogram, ultrasounds, and bloodwork) performed at my OB's office. OB-Gyns also perform SHGs, you know, they aren't the exclusive property of the REs of the world! Clinic 1 was surprisingly okay with it - there were some paperwork hassles that I would have to coordinate, but the only time I would have to see them was for the actual transfer and a consult appointment or two.

This was all back when I thought the only thing determining my family planning efforts was that I would "lose" the 3 remaining IVF cycles covered by my insurance in June 2014. But then! My ovaries woke back up and all of a sudden the schedule was real, with dates circled on the calendar and receptionists who were trying their hardest to fit me in. My SHG back in 2011 at my fertility clinic was a five-minute event so I was expecting to hear something similar from the OB. However, not only did they not have an opening for 3 weeks, they said that the test would take an hour. I said of course, that makes sense, I have to check in, get undressed, sign some paperwork, etc. And their coordinator said no, all that was taken care of in the 30 minutes before the test itself, the actual appointment would be for 90 minutes so that we budget 60 minutes for the test. Um, no. What are they doing in there for an hour? You push some saline, take a few pictures on the ultrasound, remove the catheter, and you're done! I don't dare look it up because even reading descriptions of the procedure will upset me for the rest of the day, but has anyone ever heard of this procedure lasting more than a few moments? Long story short, I said thanks but no thanks and called the fertility clinic instead. Four days later, I had a 20-minute appointment there during my lunch break and was back at my desk before anyone could even notice I was gone (so yes, Clinic 1 does score points for efficiency.)

However, now that my cycle is underway, I received a very nice phone call from a very nice nurse who has been assigned to my case. She was new to the clinic (at least, I hadn't interacted with her at all during my previous cycle) and I took a deep breath and gave her a little background information. I explained that the last cycle I had was incredibly traumatic, that I now felt very anxious and uncomfortable to even be in their building, and that at one point I had tried to coordinate at least part of my care through my OB to avoid having to go to the fertility clinic any more than absolutely necessary. She seemed sympathetic but not terribly interested in the details of my story - except that a few days after our discussion, she called me again to say that she had arranged for my next ultrasound and bloodwork to take place at my OB's office so I didn't have to come back to their facility. And of course it was terrible timing, I was about to run to a meeting and I was holding a bunch of papers and grabbing my purse and my laptop etc., and I sort of just said "Okay, thanks, bye" and hung up.

Should I have thanked her profusely? Fallen all over myself to tell her how very grateful I was for her help? Probably. It's the polite thing to do, after all. She didn't have to make those extra phone calls and fax over those extra orders. And I really appreciate her help with this - I'm dreading the experience anyway and knowing that I don't have to sit in a waiting room that makes me have panic attacks is great.

Honestly, though, I'm not sure how to have that conversation without sacrificing any more of my dignity. I struggle through these waves of self-loathing about having returned to Clinic 1 - it's sort of a credibility thing. How bad could it really have been if I'm going back? If I hated it so much, I wouldn't still be their patient, right? Something traumatic might have happened to me there, but what kind of person lives through that experience and simply goes back for more? Am I just colluding with their "let's torture Charlotte" plan? Have I finally accepted that they were right, that I was personally reduced by my diagnosis, that I am to blame for my infertility, that my reaction to their perfectly standard and humane treatment was just plain extreme, that they did nothing wrong and the fault does indeed lie with me?

My strategy towards those feelings thus far has been to be as detached and professional as possible. I've been giving them my office phone number, for example, since I know that at work I won't let myself fall apart when they call with appointment reminders or whatever. I would rather die than show any vulnerability to any member of my care team. (It's true that my SHG was pretty straightforward, but there was a moment when I asked the doctor how much more saline she had to push into my uterus, and I hated myself for doing it. I've been beating myself up about it ever since. I should have been more stoic.) So calling this nurse back and telling her how much I appreciate her efforts on my behalf is really throwing me for a loop. I am genuinely grateful for her help, but I also don't ever want to owe her anything. I don't want to owe any of them anything. I don't want to be the patient who requires special treatment because she's such a special snowflake. I just want to get out of there in one piece.

So: to those readers who work in a medical profession, and I know there are a few of you, listen up. The power dynamic between patients and caregivers is no joke. I know, you're really friendly with your patients. You put them at ease, you're kind to them and knowledgeable about their care and you would never want to make them feel uncomfortable in your presence. You are also the one on the other end of the needle. At the end of the day, they are physically at your mercy. You might forget this from time to time - it's easier to ignore these things when you're the member of the privileged class - but trust me, your patients do not. They imbue your words and actions with deeper meaning than you do to theirs, so choose them carefully. (Example: just look at this blog post! No, actually, look at this whole damn blog!) It's that old familiar great power-great responsibility thing, of course. And bear in mind that if your patients ever seem insufficiently grateful for all of your efforts, the reasons behind their reaction may be more complicated than you know.

***

To my nurse, who with any luck will never read this: thank you.

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.

Childbirth Class

So. Childbirth class. Harry and I went in expecting it to be an opportunity for unintentional hilarity, and we definitely got that. I didn't storm out in tears, which I actually thought was a distinct possibility when the day began, so we will count it as a success.

What did we learn? Well, the class as a whole learned about the stages of labor, techniques for breathing through contractions and pushes, a couple of the interventions that might be used, protocol for births at the hospital where we'll be delivering, and we went on a tour of the facility. The instructor was approachable, knowledgeable, and had a good sense of humor (case in point: laboring by standing with one foot on a chair is colloquially known as the "Captain Morgan" position; laboring by kneeling in front of a chair and hugging it is the "After the Captain Morgan" position. Don't have to tell me twice, lady!)

But what did I learn at this class? Excuse me while I bust out the bullet points:

- Most people have "normal" labors and deliveries. The odds are that I will too, anticoagulation worries aside. Wait, what? The only birth stories that stick in my head are the bad ones, of course. Or are they? What counts as normal? How much intervention can you have and still call it normal? Can I really expect to go into labor at home and spend several hours having mild contractions while my husband keeps me calm and feeds me light, easy-to-digest foods? I put a lot of faith in statistics and it's true, most babies at this hospital are born vaginally with little to no complications, so I have a good chance of being in that group. The cynic in me whispers, "yeah, but most people have normal conceptions too, and look how well that turned out" but it did get me thinking that this might not be a total sh*t show from start to finish.

- Their email notification system is busted. I swear! I made Harry check the website right before we left the house because I thought we might have to bring something and he confirmed that there was nothing about that, and we had a little printout showing that we had paid for the class so we were all good there, so off we went. And then we arrived, and every other pregnant couple walking into the building was holding two pillows, and argh! I. Never. Received. The. Pillow. Email. Not even in my spam folder. And maybe if it's so important you should put this whole pillow thing on the website! (It was totally fine, btw. Another couple lent us one of theirs since you really didn't need two. But still.)

- There is such a thing as labor massage, and some childbirth educators expect you to learn it in a darkened conference room with a bunch of other strangers all lying on the floor next to each other on exercise mats. Props to the guy who, when she turned the lights back on, shouted "What the... this is not my wife!" and broke the tension.

- I am on the high-maintenance end of the spectrum when it comes to patient involvement. (Raise your hand if this is coming as a surprise. Yeah, that's what I thought.) Case in point: the instructor mentioned two common interventions and how they work - breaking the amniotic sac and administering a Pitocin drip - and presented the Pitocin thing as a decision that the doctors would make if they thought you needed it, even though it would make your contractions longer and stronger. Nothing about discussing it with the patient beforehand; it seemed from her description like they might just come in and hook up a bag of Pitocin and then your head could start spinning like in The Exorcist. So when she asked for questions, my hand went right up. (Be glad I didn't run to the front of the room Jerri-Blank-style and yell "I've got something to say!") I wasn't as coherent as I would have liked, but my point about how patients need to give informed consent to interventions ultimately came across. It's kind of strange since this is a basic tenet of health care, and at first she started to reply that the doctors and nurses just wanted a good outcome, and I had to say again that actually, there are specific guidelines about interventions that can be performed without patient consent. Obviously everybody shares the same goal of a healthy baby and a healthy mother, and the goal is always a mutual decision based on a thorough conversation between the patient and caregiver, but yeah. That informed consent thing will get you every time.

- I think I can expect some of the compassion and hand-holding for the delivery that I didn't get, and really could have used, during my IVF conception. I've written extensively on here about how much I freaked out during my cycle, in part because I felt like my diagnosis of infertility was a huge and horrible bombshell and I wanted my reproductive endocrinology clinic to acknowledge that. I wanted them to say how sorry they were that I had to use their services and how they would do everything in their power to keep me as comfortable as possible during my treatment. Instead, I had some pretty impersonal (and literal) get-in-line-with-the-other-infertiles experiences and a legitimately painful and upsetting surgical procedure. On the other hand, the tour of the hospital's Labor and Delivery floor revealed that it had been recently renovated to make it feel more comfortable and homey. They talked to us about exercise balls, hot showers, and jacuzzi tubs. Nobody is going to make me take out my contacts, shave my personal region, or require me to have an enema. The kicker was when we were encouraged to bring in pictures, other decorative items, and - get this - air fresheners to make it seem less like a hospital. Before my IVF experience, I probably would have scoffed at hearing this, but now it actually made me feel much better. It's not the tubs or air fresheners that matter, it's the realization that someone cared enough to make them an option, and if they care about how the place smells, they probably care about me as a person, too.

In summary: yeah, I probably am going to have to give birth in the not-so-distant future. It has a shot at not being a terrible experience. And if I show up in active labor and am told I should have received an email about bringing along two pillows, I am going to march right on down to the IT department and give them a piece of my mind!

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!

Learning to be a Better Patient

So if you read my last post about moving, and the one before that about my big work event, you might have gathered that I've been pretty busy lately. And I have, but not busy enough that I couldn't fit in two OB appointments.

I didn't post about them immediately because, well, they were really boring. Neither appointment involved an ultrasound and although it's very reassuring to hear the baby's heartbeat (which was strong, sounded normal, and was ridiculously easy to find) the two things that I'm worrying about most can't be checked without a visual image. So I have no idea how the sub-chorionic hemorrhage is doing, or how the placenta previa is doing, and we're just going to assume for now that no news is good news. My belly continues to grow, slowly but perceptibly, and all of the things I'm feeling - round ligament pain, occasional breathlessness, the remnants of morning sickness - are apparently normal. Normal is just fine with me.

However, at my appointment last week, I was the last patient of the day and I had so much to do that evening that I wanted to get out of there as soon as possible. My OB is a very kind person and has spent lots of time with me in the past going over my concerns, talking with me about the infertility/pregnancy research I've done, etc. I was expecting to have the same kind of thorough conversation at this visit, but it seems that she took her lead from me and instead we moved through my bullet-point list of questions in an extremely efficient manner. Lovenox levels slightly off? Check them again in a month. Cervical length? They'll take a look at the next ultrasound. Labor and delivery plan? Will not discuss at this point. On the one hand, I will admit to being faintly annoyed that we didn't spend more time going over this hugely important thing that's happening to me - OMG I'm pregnant but I'm also infertile and I have so many feelings! - but I was also really relieved when I looked at my watch on the way out the door and noticed I was leaving a full 15 minutes earlier than planned. And that is when I realized something that I had, embarrassingly, never actually thought about before:

This is my doctor's job.

I don't mean that in the sense that physicians should be doing something they aren't (the usual context in which "this is your job!" is used), but that my doctor probably looks at the patients on her schedule for the day the same way I look at the tasks on my daily plan at work. What can I get off my desk quickly? What needs input from other coworkers? Is this proposal ready to go out yet, or do we need to hold onto it for a while longer? How can I get the information I need to complete this project? And - how much longer is it going to take to wrap all of this up, so I can go home and start making dinner?

Obviously, patients aren't the same as 30-page documents that still need editing even though I've sent them back to the authors with the same questions like three times now. (Sorry, a bit frustrated, does it show?) Actual human beings are wayyyyyy more complex and dynamic; they can have nuanced and interlocking problems and are able to actually interact with their physicians in a way that I never get at my day job. But everyone has to come up with strategies to get through their workday. Sometimes, you just want to get the information you need in bullet points, put a big check mark next to that item on your to-do list, and move on. And as a patient, at least on this one occasion I felt the exact same way.

In the future, I'll try to do a better job keeping this in mind (although I must point out that I always come to appointments on time, with lists of questions and current medications, and I've never done the super-annoying-patient thing of printing out a stack of articles and wanting to go through them with the doctor. I'm not that high-maintenance, I promise.) But I will make more of an effort to separate "what needs to get done today?" from "what am I talking about just because it happens to be on my mind?" My OB is not going to escape a conversation with me about how pissed off I still am about my experience with IVF, and how I'll be damned if I'm going to feel equally marginalized during my labor and delivery experience. And if G-d forbid something else goes wrong, I will expect to be bumped up on her list of priorities accordingly. But not today. Hopefully. Fingers crossed. Today, I'm fine just having a check mark next to my name.