But I don't think I'm understimulating.
Home » July 2007
Ever since he found out the theme for this IIFF was to be "Seasons", Mr Bea has been singing the following song around the house (to the tune of Feelgood Hit of the Summer):
"Synarel, FSH, clomiphene, ovidrel, heparin, progesterone...
I-I-I-I-I V! F!"
He's also disappointed no-one used this song by Crowded House. However, since he was too lazy to actually put an entry together using either of these ideas, he wonders if you could just imagine them in your mind.
I am not inclined to add him to the poll.
I've already made the quip about not being able to show my face on television. This is my based-on-a-true-story video about loss, grief, and trying again. And scrubbing the kitchen floor with a toothbrush. Which I really and truly did do, for a solid couple of hours.
I apologise in advance for the poor video quality. Like a bad workman, I'm going to blame the fact it was shot using a digital still camera bought in 2003. Transcript follows.
This happened a few weeks after the dilatation and curettage. I woke up with this overpowering urge to clean. It's probably all symbolic and shit.
The house was quite messy. I started with the easy things - the kitchen... dishes... I just kept going. It was like I'd scratched the surface and all of a sudden I realised how much shit there was and how much I wanted to scrub it all away.
It always looks messier before it looks tidier. But if you don't get all this stuff out you can't sort through it. It just stays behind closed doors in a big jumble. You accumulate so much crap without realising it.
It's not about just throwing things away, though. Spring cleaning, it's about deciding what to keep. Sometimes the things you keep are things you'd forgotten you had. You don't throw out stuff that's valuable or precious. You dust it off, you clean it, you wash it, you fold it, you put it away... you put everything in its right place.
Be pretty silly to think it was going to stay like this. Life's not neat and tidy. I think that's why we have these rituals.
My mother said to me last week, "You know, before you lot were born, I used to hope you'd have interesting lives."
"You didn't read much Chinese philosophy in your youth, did you?"
"I have lived to see the error of my ways."
Happily, my life has become much more boring overnight. My hormone levels yesterday were at baseline, so the two things on my ovaries are clearly non-functional cysts, and today's ultrasound showed them already collapsing. I have started FSH injections. We'll see what's happening in six days.
During the past few months I have been surprised to find my status as an IVF patient changing. Someone described me as a "veteran" and various people have started calling me "brave". On the one hand, I'm not sure I qualify as a veteran if I'm only up to retrieval number two, but on the other, it is my seventh IVF treatment cycle counting FETs and retrievals which never made it to transfer, and if you add on the two IUIs it's fertility treatment cycle number nine. Nine sounds big.
But I still wasn't ready to think of myself as anything other than a slightly tarnished newbie until I met my original IVF buddy at the clinic this morning. A former colleague from work, she started her first IVF cycle a mere week ahead of mine. And she's having her first back-on-the-bandwagon transfer for number two in a few days. I'm currently wavering between jaded self-pity, and smugness about how hardcore I must be.
My good deed this week was nothing original. Same same, but different. Jesus repaid his Kiva loan, so I re-loaned the money to Pen Phala. Which mightn't have been the best choice, since all my loans are now due to be repaid around the same time in the second half of 2008, and I could have planned that better. Then again, Pen Phala couldn't have, and I know the feeling.
You see, in cycle news things are also same same, but different. Every time I see FS these days, he ends up rubbing his eyes as if he wants to wake up and just start the morning all over again. Remember I got a distinction in recurrent miscarriage testing? Well, I flunked suppression. I'm going to have to sit this whole supplementary exam.
Nobody's quite sure how I went so wrong. You see, a couple of weeks ago I got a line on the OPK which was, alright, not darker than the control line, but just as dark as any I've ever seen during a normal cycle. It was more or less when I'd expect to ovulate as well, the relatively poor reliability of my ovulation pattern notwithstanding. Then right on cue it went away again. Now, I didn't temp, so I'm not sure what happened after that, except my period arrived at the expected time last Saturday and it was, I'll admit, lighter than usual but certainly within the realms of normal. Today I have a nice, ripe, 24mm follicle* on one ovary. And a nice, ripe, 16mm on the other. Despite** over two weeks of synarel.
I mean, two follicles. Like one ovary decided on the joke, and the other thought it would be just hilarious to ride in on the punchline.
So IVF/ICSI#2 was in danger of being... well "cancelled" just sounds so negative - why not go with "postponed" or "rescheduled"?
This afternoon I've been told, mysteriously enough, that the hormone levels from my post-scan blood test look "better" than expected, and I am to keep taking synarel and come in tomorrow for... another scan and blood test? a trigger injection? a coffee and croissant over the morning paper? At this point I have declined to find out, in favour of relishing the excited anticipation which stems from just such a mystery. What will tomorrow morning bring? I've had a few guesses - go ahead and weigh in with a few of your own!
*slash cyst, I guess, although don't quote me.
**or arguably because of...
The Fifty Good Deeds Fund is now up to a huge $85.45!
I just spoke to MD about my test results. Oh, hadn't I mentioned this appointment with MD? No? Huh. Must have slipped my mind. Anyway.
I just spoke to MD, and everything is normal. I am a very relieved bunnykins, as evidenced by my use of the word "bunnykins". There is absolutely no good reason to suppose this cycle doesn't have a reasonable chance of producing a viable, ongoing pregnancy with resulting live birth.
I'm due to start injections on Thursday.
I realise I've taken to posting short bulletins instead of proper posts, and I'm assuming you're not bored with it yet and possibly a little relieved not to have so much
drivel reading to get through, what with Harry Potter on one hand and the general business of day to day life on the other. It turns out studying full time and working part time is crazy busy. Looking back, I can't quite remember how I fitted all the drinking in, although for the next fortnight or so I'm prepared to tackle the mystery through experimentation.
I'm saving it for the two week wait. And bloglines often delivers me up the whole body of the post (although it's been wonky the last few days - hope I haven't missed anyone...) making spoilers there hard to avoid.
But here's the deal - I promise not to click through to the comments left on any post labelled "Harry Potter Only" or something equally distinct, so feel free to spoil away there. Fair? Who's with me?
I don't know if you guys notice, but I change the blurb in the little pink bit over at the top of the right sidebar there every time I hit a new CD1. Well, after eleven days of suppression, my period has finally arrived. Today is the first day of the rest of our IVF cycle.
P.S. Thanks to whoever reviewed my blog for the Friday Blog Roundup Extravaganza! I had a re-read - it's nice to revisit old posts - and I'm sure I'll be more aware of my fellow patients this cycle because of it.
There's only eight more days til the Second International Infertility Film Festival, on the theme of "Seasons"! A last-minute checklist has been posted up at the site, and the entries are trickling in already. To fuel the excitement, here's a sneak preview from my film:
Feeling fueled? Well, eight days still leaves you time to compose an entry! Email me if any questions.
And as my good deed, when buying groceries, I chose brands which benefit charities, such as bega cheese's drought relief.
The Fifty Good Deeds Fund is up to $78.93.
Today I am shocked and heartbroken.
And tired. So far this week I've been working, studying in the evenings, and getting up at three hourly intervals during the night because the dog keeps wanting to be fed. I have been instructed to feed her as much as she'll eat, so all day I tempt her with various doggy treats, which she refuses. Then all night she nudges me awake to demand food. This morning I didn't have to be out til nine, so I set my alarm for eight, hoping to catch up on some rest. At 6:45 my father woke me up to say, "Don't worry about getting up early - I don't need a lift anymore." Thanks, Dad.
On Monday morning I returned to my workplace of yore, and it hit me like a brick. I've come a long way since last November, but the familiar setting brought back overwhelming feelings of despair as if they'd been lying in wait, quietly watching for me to step through that door. Twenty-four hours - not enough of which were spent sleeping - later, I was rostered alongside this colleague (call her S) listening to Beloved Dog's latest blood test results, which are poor. "Fuck," I said, the first tearprick causing a blink. "It must be me. She was getting better before I came back to town. Every time I arrive she gets something else. I swear I'm cursed. Actually cursed." For a second, S looked at me. Then she burst out laughing.
"I was being serious," I said.
"I know - that's what makes it so funny." A few guffaws later and she pulled herself together. "Sorry, but that's the most ridiculous thing I've ever heard." Then she looked around furtively and indicated an oft-unused corner with her head and a waggle of her eyebrows. Soon we were sitting side by side on the floor, our backs against the wall, quietly secreted away*. "So tell me about IVF," she said. "How does it work?"
I can't for the life of me remember anything humorous about our conversation, but we spent much of it in hysterics. Such punchlines as, "...which is when I started to think about killing myself," had us doubled over with mirth.
At a certain point we started to talk about her pregnancy. "You think you've got problems - look at me!" she exclaimed, and for some reason we nearly died in the throes of our ensuing merriment. "After that talk," she disclosed, having collected herself, "I started thinking, gosh, you know, my sister got pregnant all the time, often by accident, even when on the pill. And here's me, I've been using contraception faithfully for ten years straight, and not one single pregnancy! So we got a bit sloppy and the next thing you know... then I thought, well that's good, I can do it. Now if I could just put it on hold for a while, because I'm really not ready. You know?"
"I have never experienced that sequence of emotions." (Cue roars of outrageous hilarity, amidst which she managed to choke out, "But I hate kids!") She's on maternity leave soon. We've arranged to catch up for lunch.
Going home, I felt better. When my fertile friends decided I was too difficult to talk to, I struggled with the thought it was all my fault. My conversation with S, apart from providing me with an hour of much-needed laughter mixed with genuine sympathy, allowed me to believe it wasn't.
"Goodness," she said, wiping her eyes after yet another improbable fit of amusement. "I guess you have to laugh, don't you?"
"No you don't," I replied. "It's stressful, and tragic, and painful, and uncertain, and isolating." And just when you think the road is smoothing out, you come home to find the blog world in crisis. "You don't have to laugh. There's not a damn fucking thing about it that's funny."
She nodded. And with that, we fell down laughing too hard to breathe.
*We weren't skiving. We'd actually both finished our shifts by this time.
Although, to be honest, if there's two or more of you just take a taxi.
How can you not like a city with year-round al fresco dining?
Through a strange twist of urban renewal, the local brewery (XXXX, of course) is smack bang in the middle of what we like to call "Silicon Gully" - the dotcom and IT district. Coincidence?
This is a picture of Brisbane's King George Square. I like to call it What The Fuck Are They Doing To King George Square.
The steps to the clinic, from halfway up. I hope there's not this many to our family-building journey.
Hope on the Hill - the clinic is on the left, behind the trees.
St Steven's in town...
...tourist pitstop, school excursion favourite, and good place to pray after your transfer.
The middle of our street. (Our house not visible).
One of the sprawlingest cities ever. Over 30km later, we reach the northern outskirts from the centre of town.
This is just one stop on the Virtual World Tour! Once you've seen the sights, be sure to pack your bags and travel on to the next destination.
- Used Qantas online feedback form to praise woman who did my booking last week. Woman is identified by staff number, not by name. Hope it gets through to right person. Thanks, Nica, for suggesting the idea - great minds think alike!
- Caught up with friends. Real, comfortable-feeling friends. Didn't discuss anything infertility-related. Felt all warm and fuzzy and cared for.
- Got offered a place in a Masters course (bioethics). Enrolled. Lots of paperwork still pending. Started trying to track down books on reading list in such a way as to avoid bankruptcy. No books so far. Class starts Monday.
- Discussed new postgrad image at length with several people, who advised me on wardrobe and makeup. Culminated in buying new sunglasses. Arguably more important than buying new textbooks.
- Spent quality time with beloved dog. Beloved dog looks awful - like a dog who's been sick for almost a year straight. Toast-rack thin. Sparse hair. Inability to play like she used to. But very bright and happy, and hopefully on the long road to recovery. Suppressed frustration with parents, who can't tablet her even though she's an extremely easy dog to tablet, because these drugs are not supposed to be handled by women who are trying to become pregnant and it's sweet of them to do this for me, even if it does take them for-freaking-ever and the tablets get spat all over the place. Love you Mum/Dad.
- Had deep and meaningful discussion over kitchen table about Aunt who complains constantly about the stress of being a grandmother to my mother, who is starting to feel like someone needs a slapping.
- Read half a blog for the Roundupaversary. Other half pending. Neglected to take my camera to photograph the clinic for the Virtual World Tour. Kicked myself.
- Emailed MD about test results, no response! Phoned today - machine. Will try again tomorrow.
- Worked on IIFF.
- Started sniffing. Back on long protocol. For those catching up - decided on long down-reg. Synarel debacle. Changed plan to short down-reg. Airline debacle. Now back to long down-reg. Stay tuned.
- Ran around clearing backlog of medical claims, gathering end-of-financial-year documents, etc etc etc - all those "well, I'll leave it til I get back" errands I've been putting off for a couple of months now.
- Lined up part-time work for duration of stay in Australia.
- Bought new organiser!
- Checked adsense account - up to $76.43!
- Read fantastic summary of the characteristics of a "survivor". Feel like I've failed the "quickly" part of the description, but it's not too late to cultivate the necessary attitude. Entered "cultivate survivor's attitude" into the Saturday afternoon slot in my organiser.
Max's Mommy kindly emailed this paper to me in full PDF version(1). And I kind of liked it. Since there's been a lot of discussion lately, I wanted to tell you how I came to this conclusion, and what I think this study means for a patient like you. Take it with a grain of salt. My ability to interpret these things is limited by my rather stunted ability to care about statistics. Either the rest is good, or someone will call me out in the comments(2). In any case, I hope it'll be worth a read.
So let me start with the question I always ask when I pick up a scientific paper: why should I care?
The truth is, no-one reads these things for fun. To find out whether you should care about this study, you need to know what the researchers are trying to ask. A well-designed study doesn't ask much - the more you ask at once, the more confused your answers become. IVF with PGS (Mastenbroek et al) asks what happens to pregnancy and live birth rates when you do PGD using laser-assisted biopsy of three-day-old embryos for no apparent reason on IVF patients between the ages of 35 and 41. If you are looking for an answer to any other question, you are reading the wrong publication.
Examples of Questions Not Addressed By This Article:
- What happens when you do PGD for a very good reason on a young patient (one with a balanced translocation, for example)?
- What is the rate of live, healthy births from IVF with PGD, as opposed to IVF without(3)?
- What happens when you do PGD using a different technique(4)?
- What happens when you do PGD on a woman with a history of recurrent pregnancy loss, or PCOS, or a pistaccio icecream addiction?
- Can PGD help predict this season's celebrity shoe fashions?
The list is endless. You can probably think of a few of your own.
Having established what the study is asking, you need to decide if the question is important, and if it's relevant to you. In the case of this study, a lot of people will be nodding "yes" to both. There are an awful lot of patients starting IVF at age 35 or above, who have been through the standard infertility workup, and have no special reason for doing PGD. And the PGD technique described is widely enough used(4).
You could study a different PGD technique, but you'd be asking a different question, and patients and clinicians in the field have to know how to apply the tools they've got. Likewise, if you're a member of a special patient group - keep walking, sister. The question you're interested in is just not here.
One of the big reasons to care about this paper is their length of followup(5). Followup can be difficult, and/or researchers get lazy, so a lot of IVF studies get sketchy after six or seven weeks' gestation. Thing is, as a patient, I actually don't give a fuck about pregnancy rates - even clinical pregnancy rates. I care about having a live baby, and getting to take him home.
There's a subtle distinction to be made here between bad science and irrelevant science. Highly rigorous studies can ask questions very few people are interested in, and a paper on the very thing you want to know can leave you without answers due to ill-thought-out methodology. Relevance is also relative - don't get angry with the researchers because you want to know about the effect of pistaccio icecream addiction on embryo implantation rates, and they've decided to study fruits of the forest. Fruits of the forest eaters are people too(6).
To sum up: when Aunt Jane (or your friendly newspaper health science reporter) brings you IVF with PGS (Mastenbroek et al), don't forget to ask that all-important question: why should I care? What are the researchers asking, and is it relevant to me? If there's no reason to take an interest, you've got more important things to do with your time(7).
(Part Two, in which we actually read the paper, coming soon.)
(1)If you're interested - either in PGD or following my train of thought - email me. (Back)
(2)That's an invitation. I know there are scientists out there - don't pull your punches. I can take it. This blog category is not the place for unconditional support. (Back)
(3)Is this a more important question? Perhaps. The researchers tell us they are in the process of collecting this data. I know I'm not the only one who would be interested in these results. (Back)
(4)A lot of clinics prefer to biopsy older/bigger embryos. Personally, I'd be more interested in seeing the same study repeated using a different technique, but the one described here seems widely-used enough to make this paper important to clinical practice. See also the paragraph about bad science vs relevant science. (Back)
(5)Technically, they based their analysis primarily on the ongoing pregnancy rate rather than the live birth rate, but apparently the latter mirrored the former. Truth be told, I would care more if they'd focussed on the latter. At least they reported live birth rates, which is more than I can say for many studies. (Back)
(6)Lesser people, in many ways, but still. (Back)
(7)This may seem like a very basic step. I think that's why so many people forget to perform it. Newspaper reporters, in particular, have an incentive to try and make the article seem as widely relevant as possible - at least until you read beyond the headline and first few paragraphs. And Aunt Jane, as you know, is just an idiot.
To bring it back to this study, I've decided through these questions that I don't personally care too much. The fact I'm not in the right agegroup doesn't worry me a lot - genetic abnormalities and implantation failures occur in my agegroup too - although I should keep this factor in mind. I'm in a special patient group, though, having suffered three chemical pregnancies and a miscarriage at nine weeks, and the article says nothing about whether PGD helps this group specifically (although that's been investigated elsewhere).
A proper analysis of the live, healthy, take-home baby rates from each group would be more important to me. Hopefully, this is coming. Interestingly, the rates of miscarriage due to foetal abnormalities appear to be about the same in each group from the data reported, although they weren't looking into that very rigorously at all. Arguably, too many questions. The other reason for my ambivalence is I think my clinic uses a different PGD technique.
This is me, though - you might have decided the article is exactly what you are looking for, and it might still answer your question well. We'll have to read it to find out. (Back)
I surged. I tried to book a flight. Not only have the airbus people not come through on time with some airline thing they were supposed to do, but the entire population of the northern hemisphere is on holidays for summer, and contrary to millions of years' worth of carefully-honed seasonal migratory patterns, they're all flying south for it. There are a fucking lot of people in the northern hemisphere.
After much googling, several phone calls to different travel agents, and the invocation of my frequent flyer status*, I broke down and wept on the phone to Qantas who - bless that woman's concerned customer service and soothing voice** and damn me for not getting her name - managed to dig me up an airfare which will have me in town at the right time.
It leaves tomorrow night***.
"It's been a really horrible couple of years," I found myself sobbing at one point, "and every time I turn around someone's thrown one more obstacle in my way. I just thought booking flights was the least of my worries."
Half an hour and a few deep breaths later, I guess it still is****.
**She suspects I won't have quite the same problem next time. Sure, the airbus situation isn't going to be fixed in a hurry, but the summer holidays will end (although she did warn me about the Rugby World Cup in September/October - at least I'll be prepared). And I have great faith that the market will work to fill any medium or long-term gaps. That is, of course, if there has to be a next time (smack!).
***Fuck! That means I have to go NOW to return those library books.
****Still have to get Mr Bea there, of course - that is, if we want to use fresh, new, vitamin-enriched sperm. Thankyou, September 06 Bea for having the foresight to freeze twelve straws of semen, even though that meant having to collect the last lot en route to the airport in the half-hour gap between the clinic opening and Mr Bea departing indefinitely for foreign shores. They said you were crazy. You were, kid. Just crazy enough.
Mr Bea now safely booked. Must remember not to collapse in tears quite so easily in future. I think I may be feeling a little on edge.
The OPK gave me teaser lines, but I did not actually surge. My test results did not come through. I was not impelled to have another flip-out over the possible outcome!
The world at large did not concede that, since I've been waiting quite a while, it's my turn to be pregnant next and not some woman who only just had a son eighteen months ago.
But I did not let this spoil my lunch.
My sister did not fail her very important exam. Neither did she get the job she wanted.
I did not hear back about a course I've applied for.
I did not expect the Fifty Good Deeds fund to be up to $73.58 already.
And the Aerosmith version of "Give Peace A Chance" from the Amnesty International Album did not sound the way I thought it would. But it was still cool.
First, I have to be honest and say this entry is no-where near as exciting as the one I just posted over at the International Infertility Film Festival site. So please, if you have to choose - go there. I'm secretly hoping you'll come back after you've finished, but I understand if that can't be the case as I know your time is valuable, especially with film festival deadlines looming. I'll make things short, if that helps.
It's been two weeks since my blood tests and biopsy, and I think I've held up pretty well so far. The results are now due sometime within the next week, and I just wanted to say, "Holy fuck, what if they find something really fucking terribly wrong and it all goes to shit and this is the end or maybe which in some ways might be worse they say it's bad news but not quite the end because if you just keep trying statistically speaking after thirty-seven cycles of IVF you'll probably but of course no guarantees manage to make it to term and oh good fucking grief what will we do if it's bad news?"
Thankyou. I'm planning to flip out briefly again tomorrow at six. Join me!
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