How do you feel NORMAL???

How do you feel NORMAL?

It was an important question. An innocent question, actually. Posed by a friend of mine over Shabbos dinner last week. It was my fault, really. I had told him that in any given IVF cycle, a woman could be on 10-12 (or more) different medications.

Just as an example, here's what I took/take:
Doxycycline
Baby Aspirin
Birth Control Pills
Lupron
Follistim
Luveris
HCG Injection
Zithromax
Estrace
Prenatal Vitamin
Metformin
Progesterone in Oil Injections

Now, I didn't list out my medications for him, but just at the sound of 10-12 (or more) medications, he was shocked. Visibly shaken. How do you feel NORMAL?

He immediately tried to retract the question, sensing, perhaps, that he may have stepped over a line into territory that was too sensitive. But, honestly? It was an honest question. It was an important question. And it deserved an honest answer.

The truth is, you don't feel normal. Nothing about this process is normal. And nothing subsequent to this process is normal. A friend of mine who has four children, including a set of 3 year old IVF twin girls is still so completely traumatized by her IVF experience that she can barely remember any of it - she has so completely blocked it out of her mind. She herself is a physician, and so had a deep understanding of the clinical aspects of the process, and yet she has retained nothing of her one IVF cycle because being forced through this emotionally draining experience was too much for her to process. And, in fact, it was the sheer number of medications that pushed her over the edge of sanity with the whole experience. To her, it was taking someone who was, on the surface, a completely healthy human being (save slightly elevated cholesterol in her case), who took no medications in her life and suddenly handing them this enormous box of medication that would become their life for the next month. That aspect alone was so life-changing for her that it seems that she will never be the same, and possibly will never be over the bitterness of the experience.

I, for one, am fascinated by this, as I've always been a person who has to take a handful of pills before I go to bed at night, so the boxes full of medication don't bother me a bit. That being said, there's nothing normal about giving yourself injections three times a day. There's nothing normal about any of this, of course. There's nothing normal about going in for ultrasounds every three days, or every other day, or in some cases (like mine) every day by the end. There's nothing normal about all the bruises we end up with all over our bodies. On our arms from the blood draws. In our hands from the IVs from the egg retrieval anesthesia. In our stomachs from the subcutaneous injections. In our buttocks from the PIO injections. There's nothing normal about any of this, is there? How could we possibly feel normal?

Nevermind any of that, he said, if you're taking all of those medications, sooner or later the side effects have to add up! That's for darned sure. The debilitating headaches. The hotflashes. The exhaustion. The snippiness. The crankiness. The nausea. The headaches. The weight gain. The weight loss. The headaches. The weepiness. The mood swings. The headaches (have I mentioned how much I hate lupron?). You're right, my friend, we don't feel normal. We feel like shit.

And yet, we are expected to lead our normal lives. We are expected to lead our normal lives without letting on to the world that there is anything at all out of the ordinary going on in this very private aspect of our lives. We are expected to sit quietly hoping and praying for a miracle. We go to work each day. We come home each night. We shower, we get dressed, we socialize (if we can). If we already have children, we still have to tend to them, run their carpools, help them with their homework, take care of their appointments, get them to soccer. We are expected to sit at baby showers and smile as if they don't bother us. We are expected to ooh and aaah at other people's pregnancy bumps. We are expected to be normal, functioning members of society with all of these hormones injected into us - side effects and all.

Yet, we cannot lead our normal lives. This week alone, I've had to cancel three meetings and two lunch dates. Last week I had to keep three people on call for Shabbos to have things arranged so that I had adequate child care and halachically appropriate arrangements for me to go to the clinic should I have to go for retrieval on Shabbos (I did have to go on Shabbos). Things change at the drop of a hat. I had only 48 hours notice to make my arrangements for retrieval on shabbos - a complex set of arrangements to make - and that included moving my entire work schedule around on Friday so that I could go into the office in order to sign all my consent forms ahead of time, since I wouldn't be able to sign anything on Saturday. This week, I was supposed to have Transfer on Thursday. Then Tuesday. Then Thursday. But maybe Friday. Who knows!

We can't schedule vacations. Heck, I can't even schedule lunch with my friend L who wants to take me out for my birthday which was last week.

So, no, my friend, we don't, and can't, feel normal. But I thank you for your very honest, and very important, question.

PIO: It Does So Sucketh

PIO injections? Not nearly as horrible as I expected them to be. They don't hurt as much as I thought they would. They go in relatively easily. We haven't hit an artery yet (er, does that happen often?). Basically, we're all good.

Or, um, I thought so.

I mean, there's the mood changes. PIO, is systemic, you see, unlike Prometrium or Crinone, etc. So the mood changes. And the exhaustion. And all that good stuff. I can live with that. I'm moody and exhausted anyway (Shut UP!).

(and the estrace? Did I mention estrogen makes me cry at the drop of a hat? yeah...)

Anyway, back to the PIO. It's going well. It's all good. Not hurting. Life is good. I even gave myself my own PIO injection last night without any difficulty. Not bad. No real pain. Life is good.

Except now, every single injection site (not that there's so many now) is all lumpy and owie. And, in the face of this morning's news, I have decided to be annoyed about this development. Bah. How am I going to deal with 18 days of this (more if I'm pregnant, but who's counting on that?)


Edit: Yes, I know all about crinone, etc. I was even in a study for crinone once. But, my clinic uses PIO exclusively for IVF patients for at least the first 18 days after retrieval, except when there is an allergy to sesame. And, frankly, it's not that bothersome to me to do the PIO shots - it's just that this morning I had a lump in my patootie and I needed something to focus on and whine about other than that damn embryology report. I'm so sick of embryology reports. (though, I am, of course, on pins and needles awaiting tomorrow's report...I never claimed to be consistent)

I don't care if it only takes one

Yes, people, I know it only takes one. I get that. But the cliche isn't helping me right now. I have a right to wallow for a few hours in my less-than-stellar news, and that's precisely what I'm going to do now, because today's news was even less promising than yesterday's news.

Let's Review:

Going into Retrieval: We were expecting 4-6 eggs (not stellar news, but at least we were expecting not stellar news)

Retrieval Day: 10 eggs retrieved! (Double what we expected! A great number, all things considered)

Day 1 Fert. Report: Of the 10 eggs retrieved, 9 were mature (1 post mature) and all 9 fertilized and were 2 celled embryos (unbelievably good news! I was stunned and overjoyed by this news!)

Day 2 Embryology Report: 1 didn't make it at all, 6 2-celled embryos still (1 with no change; not a good sign), 2 6-celled embryos (with 10-15% fragmentation, not good). Not a good enough report to warrant a 5 day transfer. Transfer scheduled for day 3 at 2pm. Disappointing news at best as with Single Embryo Transfers, they always try to go to blast in order to find the cream of the crop when possible.

Day 3 ... (Today):

I'm on my way in to work and the weather is crappy, my head is pounding, my tushie is sore from the PIO shots, I'm cranky. You get it, right?

I'm walking out of my parking garage on my way into my office juggling my keys, my briefcase, a couple shopping bags (I bought candy to re-fill the candy jar I keep for people to snack on in my office), and my phone rings. I'm fumbling for it, but I have to pull off my glove (did I mention it's snowing?) to get it open and turn it on; I almost miss the call. It's my nurse at Ye Olde Fertility Clinic.

"Hi Perky One*, it's NurseAwesome*. SuperDoc wants to talk to you."
"Yeah? All right," I sighed.
"You okay??"
"Yeah. Yeah, I'm fine." I said, knowing that this just wasn't going to bode well.
"Okay, hang on, here he is."

Why the man couldn't have just dialed the phone himself is beyond me. Because that introduction is exactly what gave me the anxiety I had, you know. But whatever. I do love him, and I know he has my best interests at heart. And for all I know it was NurseAwesome that wanted to make the call to me so that she could guage how I was doing, since she knows how pissy I've been all cycle. (Update: It turns out that SuperDoc did call me directly himself - but he called me at home and left a message at 8:45. Of course, I wasn't home - I was on my way to work. NurseAmazing knows better, and she knows me well enough to know that I probably wouldn't have been okay with just hearing a voicemail on my home number ... which I may or may not have checked before I went in for my appointment this afternoon, by the way ... so she probably said, "Yeah, no, we're going to call her cell phone now." That's why I love her.)

So he said he took a look at the embryos with the embryologist this morning and what I've got is a 7-cell, a 6-cell, a 5-cell, and 2 four cells. If I were any other patient, with their normal criteria, he'd be recommending a two-embryo transfer today (day 3), but he does NOT recommend that with my history. With HOMs at home, and with my pregnancy history (e.g. not good) and with my need to ensure I do not get pregnant with twins (unless, you know, they're monozygotic, in which case, we just had no way of controlling that risk), he is wholly opposed to a 2-embryo transfer. Which is good, because I am also opposed to it. My exact words were "absolutely not." And he responded, "We are on the exact same page, don't worry, I'm not recommending it - I would caution against it."

My embryos look pretty crappy. They do not meet the criteria to go to a 5 day blast, but given the choice between picking a crappy single embryo for transfer today as planned or trying to grow one to blast by Thursday or Friday, he thinks our chances are better if we wait. He believes we are likely to have one at the blast stage if we wait.

So what happens if we don't have any blasts by Thurs/Fri? We transfer whatever the best we've got is. And what if there's nothing? We scrap the whole thing and start over. After all, we were all set to cancel this cycle last week before we got to retrieval, remember? It's really no different, except that now we've been through a lot more hell than if we'd canceled ahead of time. But at least now we've got more information, right? What I don't know is whether this would count as a full IVF cycle for insurance purposes if we don't make it to transfer. My guess? Once you get to retrieval, it counts. That being said, my doctor is confident that we'll have something to transfer either Thursday afternoon or Friday morning, it's just a question of quality.

And so it goes.


*Note, she did actually use our real names... she doesn't refer to herself as "NurseAwesome" though she'd be perfectly justified in doing so.

Day 2 Embryology Report

Today's news isn't as great as yesterday's news.

To review, yesterday we had 9 two-celled embryos from our nine mature eggs retrieved, which was fantastic news. I was overjoyed, shocked, and amazed.

Today:

1 didn't make it at all.
6 are still 2 celled embryos (1 has had no change and therefore will not make it to tomorrow)
2 are 6 celled embryos, but they are breaking down (fragmented) and are unlikely to make it.

Transfer tomorrow at 2pm, unless I hear otherwise. Not looking great for having anything to freeze by Thursday (they bring everything to blast for freezing at my clinic, as they find they have a much higher FET success rate that way).

Interviews

I do have links to the interviews that aired on the news the other day - I don't want to post them publicly here, but if you email me and you don't strike me as a completely scary stalker-type, I'll email you the links.

chezperky [at] gmail [dot] com

Fertilization Report

Good news today as well.

Expectations for a fertilization rate are that 50-75% of the mature eggs retrieved will fertilize. So if all 10 of the eggs retrieved yesterday had been mature (unlikely), we'd expect 5-7 of them to fertilize by today.

Of the 10 that were retrieved, 9 were mature (we expect that one of them was post-mature... remember that 25.9 follicle?)

Of the 9 mature eggs yesterday -

I have 9 two-celled embryos today.

Honestly, a girl can't ask for better news than that, can she? I think I actually shed some tears.

I'm still in a fair bit of pain - but it's worth it.

Retrieval

We got 10 - way more than expected. I'm in a lot more pain than I expected to be, but I've got decent pain drugs on board (they even gave me fentanyl, vicodin, and morphine after I woke up). Apparently, they had to manipulate my ovaries a lot to get to them, which explains the pain.

I'm still pretty out of it, but pretty pleased with today's outcome.

Celebrity Status

I went to Ye Olde Fertility Clinic today for my interview with Local News Station #1 this morning. It went really well and J, the Marketing Supervisor Extraordinaire (MSE), for YOFC said I was awesome and hit all the best points possible. I don't like to brag, but... I rocked.

Seriously, if I get a DVD of it (the MSE at YOFC did promise me he'd do his best to deliver the goods) - I'll see if I can figure out how to upload it.

After the interview, I went down to meet with my nurse to sign papers in advance of tomorrow's retrieval. I disclosed to her the fact that I screwed up my trigger shot this morning... I mean, I didn't screw it up, but I was 15 minutes late (I knew this wasn't a problem, but I figured full disclosure was a good thing, right?). Anyway, she said it was completely inconsequential.

So I signed everything, educated her on the weird ways of Judaism, and as I was wrapping up, another nurse knocked on the door and told me that MSE wanted to know if I could stick around because Local News Agency #2 was on their way over and wanted to talk to me!

Well, golly! I'm in high demand!

I wasn't AS in love with this reporter and this one wasn't quite as, um, smart. But it went well, and I got to have a little more fun on camera. :)

And now I'm home and it's time to get ready for Shabbos.

I feel good about tomorrow. I think it'll be okay. I think we're going to get more eggs than expected. I think this cycle isn't going to be a bust. I hate even saying that. I hate that I'm actually putting optimism into print. I am so pissed off at myself that I'm allowing myself to make it publicly known that I have any hope, but I do.

So there.

Scheduled

Trigger Shot: 5:15am tomorrow morning (1/30/2009)
Nothing to eat after: 10:15am Saturday (1/31/2009)
Nothing to drink after: 1:15pm Saturday
Arrive at Ye Olde Fertility Clinic: 3:45pm Saturday
Retrieval time: 5:15pm Saturday (1/31/2009)

I was getting nervous - I hadn't heard from the clinic with a trigger time by 6:25pm. Their offices close at 5pm. I wasn't sure what to do. Should I wait for their call? Should I page the doctor on call? Should I figure it out by myself? What to do?

I called in reinforcements. I called Mel. I called Leah. I asked advice. Both advised I call the doctor on call, and though I felt ridiculous, I did have him paged. Not one minute after I got off the phone with the answering service, my cell phone rang and it was the OR Scheduler from Ye Olde Fertility Clinic with my trigger information. Crap. Anyway, at least I got all the information, right?

And so 15 minutes later when the doctor called back, he was very nice when I told him I got the information I needed. "Good luck," he said.

Good luck, indeed.

Trigger Time

Today's appointment was quite interesting. First of all, I had my old buddy, Dr. S. in monitoring. Also a medical student (maybe a resident? I'm unclear. Actually, she was introduced as Dr. So and So, so she must be a resident or fellow). I immediately gave him some crap about the lack of a mobile in Room 1 (I was in Room 4 today, but that's not the point). He assured me he's on it, and I told him that I swear if he doesn't take care of it by the end of this cycle, I'm getting one myself, hanging it myself, and sending him the invoice and he said that he had no problem with that. :)

"Hey, do you want to be on television?"
"What? huh?"
"Seriously, do you want to be on television?"
"I hardly think I'm interesting enough to be on television."
"Ohh, I wouldn't say that! You're not giving yourself enough credit here!" M (sonographer extraordinaire) chimed in.
"Seriously, I need someone who is doing an elective Single Embryo Transfer, and all the better if it's someone with HOMs."

So I made him a deal. I'd do his TV gig if he got a damn mobile in Room 1! I think it's a pretty sweet dealio, myself! And he agreed, so we're all set. Tomorrow, I'll be interviewed by a news station. Neat, huh? So much for keeping a low profile, though! I probably will not be disclosing the location of my blog. :)

(Turns out what the deal is ... is that they've been getting a lot of media requests since the octuplets were born to find out their stance on the whole thing. My clinic does a lot of eSETs... as far as I can figure, they do more than any other clinic in the area... and they're really trying to push that angle. My nurse thinks it's great because she's hopeful it will help get insurance companies to cover IVF when they didn't used to, etc. She has more faith than I do...)

Anyway, back to the appointment.

We're focused on:
Right: 25.2 (probably past it's prime), 19.1
Left: 19.3, 18.6

There are some smaller ones, but those are the ones we're counting on. I have in my head an idea of how many we might get above and beyond those 3 or 4 (based on the measurements we saw today), but I don't want to jinx it and I don't want to go all crazy, so we'll just go with 4 for now and be happy with anything above and beyond that. Trigger tonight. I don't yet know what time. Retrieval Saturday. This is a logistical nightmare, but my nurse is trying to find the least painful way around this.

And that's where things stand right now.

Waiting *updated*

Not ready to trigger, apparently. WHATEVER.

SuperDoc is this cute little South African Jewish man. My primary nurse is as Irish Catholic as you get. Me? I'm an Orthodox Jew. So SuperDoc loves to torture my nurse by peppering his notes to me with little Hebrew & Yiddish phrases. She can never pronounce them and certainly has no idea what "meshuga" or "shiksa" means.

So today he tells her that I should stay on the same dose tonight and come back for monitoring tomorrow.

"Are you frickin' kidding me?" I said.
"You're not ready to trigger, darlin'" my nurse replied.
"Oh for crying out loud. This is going to mean a Saturday retrieval."
"Or not. If I had to guess I'd say you're goint to trigger Friday, not Thursday. But that's just a guess."
"Friday? So a Sunday retrieval then. Hrm. I could work with that. But you know it's going to be a Saturday retrieval. He's doing this to me on purpose."
"He said to say something else to you, but you know he's just trying to make me look stupid, because you know I can't pronounce any of this..."
"Okay..."
"It says, 'peekoowa' I dunno... there's that 'ch' thing on the end. Then 'ne-' um. Peekooo. I don't know."
We went on like that for a while before I realized what she was saying.
"Are KIDDING ME? Pikuach Nefesh? Is that what he wrote? REALLY?"
"Yeah! Exactly! I knew you'd know what I was trying to say!"
"You know, that quiet, serene, calm little man is evil. EVIL. Do you know what he just told me?"
"Um, no? I have no idea!"
"He just told me I'm having retrieval on Saturday."
"Er..."
"Oh, he acts all quiet and and soft-spoken and sweet, but underneath it all? He's a little smartass, that one! And don't you forget it!"

(for the record, pikuach nefesh does not apply here, though that doesn't mean that there aren't halachically appropriate ways to be able to go to a retrieval on Shabbos - it's just a logistical nightmare)

Needless to say, this is not going to be fun at all if that's the way it plays out. But hey, maybe another day or two will get us to 8? Meh. We'll just have to see what happens, right? There's really not much we can do about it regardless. It's going to be the way it's going to be and it will either work or it won't.

Update: same dose = same dose as prescribed originally. I did tell my nurse about the accidental double dose. But no harm, no foul, and we'll just see what happens.

and yes, my doctor does have a sense of humor. And he certainly does think I still have a sense of humor. Little does he know.

Probably Six

Here's what I've got:

Right: 20.9, 15.6
Left: 16.9, 15.7, 16.3, 14.6
(Endo, 11.5)

Probably will get 6. Me? My gut says cancel. My husband says go forward. I'm sure, when I hear from him, that's what my doctor will say as well. Whatever. I know many people would be thrilled to pieces with 6. Over the moon. And I know that quality over quanity is what we're looking for, but I have no guarantees of quality right now. And I have no guarantees that if I had quantity right now that the quality would suck. It's not always one or the other.

Yes, I only need one. And yes, I'm only planning on transferring one. But I was NOT hoping to only have one available for transfer. Bah.

Pardon my French

So, um, I'm kind of an idiot.

So last night I was seriously considering taking no meds for two days until tomorrow's appointment and just throwing in the towel on this cycle. I meant it, too. But, as I said last night, I'm not a rebel. I'm a good girl who does what she's told.

Unfortunately, I'm also a tired girl, who's getting terrible headaches and therefore apparently can't keep everything straight.

I just took my Follistim and my Luveris. But. Um. I forgot that I'd taken it at 6pm between getting home from one appointment and rushing off to my evening class. Originally I'd been planning to just wait until after the class because I didn't think I'd have time (I didn't really have time, but I'd managed to squeeze it in, since 6pm is my normal time to take it and I do hate to be off schedule).

I completely forgot I took it at 6pm and stuck to my original plan to take it after class. Um. Whoops?

So my husband's a pharmacist, so I'm sitting there thinking that maybe he can impart some words of wisdom, or at least comfort. Maybe he can tell me that I'm not going to grow an eleventh toe or a third head (wait, um, how many heads do I have?), or turn purple with green spots because of this.

"So I did something really bad."
"Yeah?"
"You saw me take my meds just now?"
"Yeah..."
"I also took them at six."
*stifling a laugh, badly, I might add*
"Wow, your head must hurt like a motherf*cker."
"Yeah, um, thanks hon."

Given that overly empathetic response, and the obvious professional concern he had for my physical well-being, I can only assume that I will not die a gruesome death from this error on my part.

Whoopsie.

Now all I have to figure out is whether to own up to my error to the doc tomorrow...

Meh

Ovaries in pain.
I hate fertility drugs.
Head pounding also.

How's that for an early morning haiku? Technically Haiku starts in the very specific and moves to the very general. Or maybe the opposite. And it usually has to do with nature (hey, this is biology, right? That's nature, sort of) So my form sucks, but at least I've got the whole 5-7-5 thing going (which, by the way, is not a requirement for haiku - haiku simply has 17 or fewer syllables). So, to recap: lousy form, bad writing, but not bad for someone who can't stand even attempting haiku.

It's snowing. I love snow. It was snowing the day I had the IUI that worked. I mean the one that worked that did not result in a miscarriage. There was a big snow/ice storm that morning/previous night. It was Valentine's Day - a huge cliche except I don't celebrate Valentine's Day.

But I digress. I love snow. It's calming - soothing. Which brings me to tomorrow. If they see more than 4 or 5 favorable follicles, I won't cancel. If it's four I'll cancel. If it's 5 - I swear on all that is holy (I know I'm not supposed to do that), I'm flipping a coin.

I'm not feeling all zen about it, but I'm calm. I hate this. I hate every stinking second of this. This wasn't how this was supposed to go. This was supposed to be easy; straightforward. This was supposed to be simple. (not that this is ever easy - but at least this was supposed to be straightforward)

I remember sitting in SuperDoc's office after my 6th IUI. The one that was supposed to fail. I was sitting there for my 2nd IVF consult (I'd had an IVF consult right before my 4th IUI which was also not supposed to work, but did, though it ended in miscarriage). Anyway, I was talking to him and I said that I do realize that compared to many women who have been through this fertility gig I have had it pretty easy and haven't been through all that much. He looked at me earnestly, paused, and said, "Let's just say you've handled your burden with extraordinary grace."

You know what?

I'm tired of handling this with grace.

Rebellion

There was a piece of me that really didn't want to bother taking any of my drugs tonight. Or tomorrow. I seriously considered just coasting until Wednesday. Blowing it all off. Probably guaranteeing a cancelation, but at least eliminating the uncertainty.

But I'm not good at being a rebel, so, good girl that I am, I dutifully took my drugs, as planned. We'll see how things go on Wed.