today i woke up to a genuine “belly full of rocks” situation. it’s not painful but uncomfortable, and i find myself moving in a guarded sort of way. odd and interesting for sure. last night, i took the last needed doses of menopur and follistim. i want to weeeeeeeeep looking at the $1000+ in unused medication there, but i know it’s always a guess how long someone will need to stimulate, and it would be worse if i’d run out before go time. sigh.
still taking prednisone, have paused naltrexone, took my last ganarelix (to prevent ovulation) this morning, and today, i’m adding in a two-injection “trigger” protocol at 10pm: lupron to make sure i don’t ovulate on my own and to lower my soaring estrogen, and hcg (the same thing an embryo releases and is picked up on a pregnancy test) to finish maturing my eggs. i’ll trigger once more at 10am tomorrow morning, and then we head to our hotel in albany.
one bonus of having 13 lovely, plump follicles is that i don’t need my wednesday morning monitoring appointment on the coast, so at least i won’t be driving 4.5 hours after driving 2.5 hours! wahoo!!
today included breakfast with stephen, who’s already off work, a gentle flat hike around a local lake, and preparations for being gone from wednesday afternoon through friday night. cat: fed. plants: watered. bags: packed. (january 6th surprise witness hearing: watched.)
in terms of heart and head, i’d say i’m curious, excited, and guardedly hopeful. this all seems a bit surreal, and i keep coming back around to the idea that a yes or a no would feel ok (yes = success, no = more of the same) but that a yes with a loss would be unbearable. one good thing about the super regimented nature of all of this though is that it really keeps you in the moment. right now, i’m mostly just thinking about the retrieval in albany, and not much further into the future than that. and if i’m honest, even more than that, i’m thinking about learning to mix two new medications tonight.
being in the now.
i’m also currently being bombed with financial forms for the wild mountain of expense ahead of us, so if you feel moved to do so, we’re still rallying community support. thank yoooooou!!!
i’ll try to check in tomorrow after we arrive in albany, but as always, social media is a better place for little updates.
after friday fridayed all over all of us, i decided to unplug for a bit, so i’ve got some catching up to do. as you can imagine, i’m having some pretty big burn-it-all-down feels right now, but i’m going to dial it in a bit and try to stick mostly to this experience.
mostly.
day 9 was poetic. not in a beautiful or nice way, but in a profound, rage-filled, and ironic bookends kind of way. i spent the morning going down to the coast for a fertility monitoring appointment and the afternoon going back to the coast to protest the fact that i, as someone with a uterus, now officially have fewer body autonomy rights than a corpse (true story). i spent the morning exercising my reproductive autonomy while smiling at my follicles on an ultrasound screen and the afternoon watching it fucking evaporate while yelling into a kn95 in a protest crowd.
funtimes sidecar: you can’t support me (or anyone else) in an ivf journey and think that embryos are people. sit with that for a bit if it doesn’t make sense at first. dig in.
but back to the good stuff so i don’t completely lose my mind… i got up at the crack of dawn friday to head down for an 8am ultrasound and lab panel. my first monitoring appointment the previous monday had given me baseline info; it had shown me what my body was up to on its own. this next visit on day 9 was the first time that i’d have data about whether or not the stim meds were working. one more gate to make it through.
and i made it!
of the 29 wee baby follicles that were visible on monday, 12 had decided to take the bait and grow in response to meds. what an incredible relief! the nurse i spoke to afterwards said as long as there were 3-4 i was good, so 12 was the bees knees.
i felt really good on day 9. no discomfort besides the swiss-cheesery of my daily injections, which were greatly improved with application of a cold pack. all of the shots i’m giving myself are in the little U-shaped area of skin beside and under my belly button, so it’s starting to look a little speckled with pin pricks, and each injection feels a little bit like nudging a bruise. mood is good though, as are sleep, digestion, and joints (yay, prednisone!). i’ve basically consumed my body weight in kombucha, so i managed to stave off doxy belly–hooray!
i joined friends on day 9 for a long weekend gathering, so the other noteworthy ivf-ery bit was that i went mobile with my clown-car of a drug bag. it wasn’t too bad though, and phone alarms are definitely your friend for keeping medicated while heavily distracted.
days 10 and 11 were more weekend fun times away. i finished the doxy and the letrozole on day 9, so the weekend was devoid of antibiotics and estrogen blockers, which meant i had a yuuuuuuge surge of social energy as my estrogen rebounded hard.
good times.
on day 10 i added another injectable called ganerelix that keeps me from ovulating on my own. the idea is to get everything as ready as possible and then keep it there. ganerelix is basically liquid keep-it-there. because they’re going in to aspirate eggs (collect with a needle), it’s important that my body not let them go on its own. the super-hooray-bonus is that ganerelix is in a preloaded syringe, so no mixing, drawing up, measuring out, changing cartridges, etc. easy peasy.
so at this point, i’m taking steroids and naltrexone to calm my immune and inflammatory responses, two follicle stimulators to grow as many eggs as possible, and and ovulation preventer to keep the eggs in place. antibiotics and estrogen blockers are done.
science is wild, y’all.
today is day 12, and it’s been a good, different, and full day. since last night, i’ve had a heavy feeling in my pelvis, like i can feel a weight pressing on my tailbone and innards. it’s odd. when i went in this morning for my third ultrasound, i could see why. not only had i not lost any of the 12 follicles, i’d gained a 13th and all were getting biiiiiiig. ovaries are generally the size of almonds; mine are currently just shy of pool balls. they’re full of little fluid-filled hollows that have wee eggs suspended inside. magic.
fun fact: the human egg is the largest cell in the body. you can just make it out with the naked eye. just for reference, the epithelial cells that line the inside of your mouth look super clear at about 400x magnification under a microscope.
so today’s monitoring trip to the coast showed that my body is going guns blazing with eggs, my uterine lining is growing totally normally (needs to be 8mm and mine is already 11), and all looks good. a couple of hours after i got home today, after she’d received and reviewed the data, my nurse from cny called and gave us what we’ve been impatiently waiting for: the official go-time deets.
this has been one of the hardest parts so far–the mysterious logistics. bodies set the timeline for ivf, and we knew that despite the lack of clarity, stephen needed to take off work, we needed a last minute hotel near a holiday weekend, and we’d have to drop what we were doing and head to albany… eventually. i gave a decent guesstimate which turned out to be spot on. earlier in the process, stephen had taken off all this week and we’d booked a hotel weds-sun knowing we could use the 24-hour cancellation policy to move it a bit. based on the call today, we go to albany wednesday night for a thursday morning egg retrieval! home friday night.
tomorrow starts another cocktail of injections to trigger my eggs to do the last little bit of maturing, and the timing of dosage is down to the hour. i’ll check back in with details on that soon, and i’ll share more as we head to albany for the retrieval. the short of it is that we’ll know how many eggs they got as soon as i wake up, and we’ll know how many fertilized later that afternoon, how many made it to embryo stage in 5 days, and how many embryos test genetically normal in 2 weeks. (stats say its 1 in 7 for my age.) i’ll go back in mid/late july to have any viable embryos transferred into my uterus in hopes that one sticks.
today’s reflection for me has been on the waiting that’s part, not just of ivf but of the fertility: waiting for fertile time, waiting until you can take a pregnancy test, waiting for your period when the test is negative, waiting for fertile time, waiting until you can test, waiting for your period when the test is negative (repeat for a decade)… and then when pregnant, waiting for results from a blood test, waiting for the results of the redraw two days later to see if your hcg levels are doubling (meaning likely a viable pregnancy)… and then when unable to get/stay pregnant, waiting for consults, waiting for appointments, waiting to see if you can save enough money, waiting to order meds, waiting for your medication to arrive, waiting to receive your care plan, waiting to see if your body responds to medication…. and so on and so on.
so. much. waiting.
today’s particular flavor of waiting is waiting to see if my body responds to medication. i’ve been taking (among other things for other reasons), letrozole, follistim, and menopur in order to attempt to force my body to grow and mature as many eggs as possible.
metaphor sidecar! imagine that your ovaries are a swimming pool, and the follicles containing eggs are swimmers. every month, there’s a contest to see who can tread water longest. at the sound of the whistle, swimmers begin treading furiously, and as they tire, some of the swimmers give up and get out of the pool. they’re done. they’re out. eventually, by the end of the process, there will be one swimmer who treads longest. ovaries are similar. every month, a certain number of follicles grow and compete for dominance, and over the course of maturation, some will poop out. eventually one “wins” and grows largest, and that follicle pops out a mature egg (ovulation). using this metaphor, the medications i’m taking are like life jackets. i’m throwing help to all participants, and if the treaders all have life jackets, hopefully all (or many!) of them will be successful. no winners. participation trophies all around.
my current waiting space is that of waiting to see how many, if any, of the follicles accept the life jackets.
at my baseline appointment a week ago, i was working on 29 little follicles (who i lovingly call my “follies”). in a normal month, one would have won (ovulation) and 28 would have bowed out. i go in tomorrow morning for another ultrasound to see how many of the 29 accepted the help of medication–how many took the life jackets. i expect it not to be all of them but really, really hope for plenty. based on the feeling in my body, something is happening. i feel a heaviness behind both hipbones (almost like the feeling of constipation but way in the wrong place). it’s not a bad feeling per se–it’s more of an awareness of parts of my body i don’t usually feel.
for the first time ever, i can’t wait for my ultrasound tomorrow, because it will give us real, usable data. it’s not vague prep, it’s not general recon–it’s the time-sensitive underpinning of next action. it lets us know if the protocol is working. it means making it through another gate.
so for tomorrow, up at 5:00, to the coast by 7:50 for an 8:00 appointment, and instant results and feedback on the ultrasound. blood work will also give good data, and i’ll have that data by 2pm.
massage at 12:45 to help promote relaxation. i finally took the advice that i give to clients for self care. woo!
today’s body check-in is that things are mostly good. sleep last night was better, and with aaaaaall of the living foods i’m cramming in, the doxycycline doesn’t seem to be having a negative GI effect. daily long walks are clearing the steroid jitter and feel good. the belly injections are getting more tender–kind of like injecting into a bruise. i’m trying to vary my locations as much as i can, but tonight will be injections 7, 8, and 9 in the same-ish place, so gettin’ tendah.
tomorrow, i won’t be at my computer until the afternoon, but i will try to post an update as soon as i can. if you’re connected to me on facebook or instagram, you’ll know what i know as soon as i know it.
tuesday was day six and my first full day on medication. thyroid medication when i woke up; letrozole, doxycycline, and prednisone with breakfast; prenatal, vitamin d, coq10 and fish oil with lunch; more doxy and prednisone and the other half of the vitamins/supplements with dinner; follistim and menopur injections at 9pm, and low-dose naltrexone before bed. i have never in my life been on a complicated timed medication regimen. mad props to those of you who do this every day for health conditions!
on day six, i didn’t experience any adverse effects from the medication besides the fact that prednisone turns me up to 11. i went for a 5 mile flat hike at holt pond preserve to burn that off. one good (and sadly, temporary) side effect of the prednisone is that my body doesn’t hurt anywhere, even after intense movement. usually my joints are screaming and my muscles are sore, and i’ve been having pain in my hands on waking for the last six months or so. all that is going bye-bye. thanks, steroids!
last night i talked and toured stephen through the med prep and giving myself my injections. i’d needed to do it all alone the first time around the night before since i was learning how to do it all and hate being watched as i concentrate. round 2 was no biggie.
in our continuing logistics dance, stephen booked a hotel in albany for us. that’s an interesting conundrum–needing a hotel near a holiday weekend but not being sure when and for how long. we’ll likely be in albany for three days, but he booked for six so we could use the 24-hour cancellation policy to shave days of the front and back as needed. one of the tough parts about remote monitoring is that we’ll likely get a 24-36 hour notice before needing to drop everything and head to albany. at least this way we won’t be foiled by the holiday weekend. i mean, sleeping in our car in the local walmart parking lot would make for a good chapter in the book (we could watch fireworks through the sunroof!), but who really wants to do that??
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day 7 feels a bit odd. i had what i’d describe as “fugue state” sleep last night, with lots of waking, lots of sleeping that felt like waking, and wild incoherent dreams, the content of which vanished as soon as i woke up. i don’t have a ton of energy or motivation right now but am hopeful that will change with the help of my morning prednisone.
there isn’t really anything new going on today, so i figured i’d talk a bit about odds, since i get asked about it quite a bit. “how likely is this to work?” is a common question that i get, and the answer is that it’s pretty incredibly complicated. here goes an attempt to break it down:
for people my age, depending on the source you check, success rates with ivf (meaning treatment that results in a live birth) are less than 20%. so for people age 40+ who try, fewer than 1 in 5 will get pregnant, stay pregnant, and give birth. sounds pretty abysmal, yes?
so here’s why it’s more complicated than that. “40 and up” is often lumped together into one big group, meaning i’m being compared to people who are 42 or 45, in good health and meh health. i’m also lumped in with people who are infertile for all other types of reasons (endometriosis, perimenopause/early menopause, hormonal disorders, etc.). it’s damned near impossible to look for statistics on “someone at 40 who’s active and in great health without any risk factors (besides being fat–more on that later) and with completely unexplained infertility”. i have a sneaking suspicion that my odds are at the top end for my age bracket.
rather than thinking of ivf as something that you get aaaaaaaaaaaaaall the way through and “20% it works, 80% it doesn’t”, think of those odds as reflective of making it through a series of gates. the more gates you make it through, the higher your chances. it’s the ivf version of “one day at a time”.
gate 1: you grow follicles and make eggs on your own. it’s easier and more reassuring if your body is already making eggs and ovulating regularly on its own, which mine is. this, combined with the fact that my tubes are open and stephen’s semen analysis is fine is the reason we have “unexplained infertility”. everything should work but doesn’t. this means my odds are higher because we’re asking my body to do a better version of something it already does. i’ve also been pregnant twice, so we have at least some proof of concept.
gate 2: you respond appropriately to the medication they give you and make TONS of eggs. normally, every month lots of little follicles (pockets containing what will become eggs) compete for dominance and the one that wins “pops” an egg out (ovulation). the hope with this medication is that the competition aspect is squashed and all those little follicles just go for it. i have 29 right now. not all will make it, but that’s my possible number. sometimes people are “poor responders” (i hate the blamey language of fertility care) and they don’t make lots of follicles containing eggs. the more you make, the higher your chances. i have 3 more monitoring appointments in the next week to keep a count of what my body is doing, and i’m thinking egggggggggy thooooooooughts!
gate 3: a surgeon is able to extract plenty of mature eggs. when i’m at peak egg (which feels a lot like excruciating body bloat), i’ll go to albany to have eggs surgically removed. the procedure is done transvaginally under anesthesia, so no abdominal incisions (yay!). the surgeon will use ultrasound guidance to aspirate (suck with a needle) each little egg out of each follicle that’s formed on my ovary. some of them may not be done cooking, hence the need to have plenty of *mature* eggs specifically. make it through this gate with a good number, and your success chances go up a notch.
gate 4: the eggs fertilize and embryos begin to grow. in a mind-blowing act of high science fuckery, a microscopic needle will be used to place individual sperm inside each one of the mature eggs. eggs that fertilize will combine dna of the four grandparents (so wild!) and begin to divide and grow into genetically unique embryos (technically, “pre-embryos”, but lets not get too bogged down). most likely, not all of the eggs that have sperm introduced will fertilize and divide. make it through this gate, and your chances go up again–the more embryos, the more likely your success.
gate 5: the embryos make it to day 3. embryos don’t love to be outside of a body, but lab technicians do everything they can to keep them warm and happy in a petri dish. over the first three days, they’ll be watched and graded, and we’ll start to get a sense of how many might be viable as the cells divide and arrange themselves. we’ll likely lose more in the process (you can start to see why having a lot at the beginning is important!). if we have fewer than 4 day-3 embryos, it’s advisable to stop the process there and freeze them ahead of embryo transfer the next month. that’s going in blind in terms of genetic viability, but if you have fewer than 4, it’s best not to risk pushing the embryos to grow in a dish any longer lest you lose them all.
gate 6: the embryos make it to day 5 blastocyst phase. if you get more than 4, you can decide to take the risk and let them grow for 2 more days to “blastocyst phase”, at which point they’re complex enough to lose a few cells to genetic testing before being frozen. this is ideal. if we get enough embryos to risk whittling them down over 5 days and then are able to test them, and we find one or more embryos that are actually genetically viable, our odds of success shoot up to around 80%. the risk with freezing at day 3 and implanting is that you’re flying blind–you could be implanting embryos with too many or too few genes and not know it. day 5 comes with more assurance, but also more embryo loss.
gate 7: genetic testing shows genetically viable embryos. if you know what you’ve got, there are fewer things that can go wrong. at my age, having genetically viable eggs is the biggest hurdle by far, because that’s not what a body is prioritizing at 40. i would really really *really* like to have at least two perfectly genetically viable embryos. and if so, we’re going to risk twins and put them both in in hopes that one makes it. the tough part about gate 7 is the waiting. it takes around 2 weeks to get genetic results back, and it’s possible that we get this far and then get the news that none are viable despite all the hope, heartache, medical care, time, and money. fingers crossed!
gate 8: your body responds to stimulation to develop a uterine lining hospitable to implantation. we’ve chosen to do a frozen transfer, meaning that this month i’m doing stimulation and an egg retrieval and our eggs are being fertilized, hopefully genetically tested as embryos, and then frozen. i’ll get my period again after a week or so of down time, and then i’ll start another round of medication geared at building my uterine lining. my body also has to make it through the gate of responding to this stimulation, and then i go back to albany to have the embryo(s) put into my uterus (much easier procedure than retrieval).
gate 9: implantation occurs. after the embryos are transferred, at least one of them has to implant into my uterine lining. i will have a shortened 7-9 day version of the dreaded “2 week wait” that people experience with sex for conception. so for over a week after transfer, i won’t know if it’s worked, and the hormones i’m taking will feel like pregnancy symptoms regardless. again though, if we implant genetically viable embryos, there’s around a 4 in 5 chance of success.
gate 10: you’re able to stay pregnant. this is the last (and to me, the hardest) gate to make it though. it’s possible that you make it all the way through ivf, the thousands and thousands of dollars, the hours of phone calls, the days of driving, the invasive procedures, the little victories along the way, and then you simply miscarry (again with the language problem). i told stephen, i think i can handle ivf simply not working. that’s really just more of the same. status quo after an interesting experiment. what i’m not prepared for mentally, physically, emotionally, or spiritually, is what it would feel like to be pregnant and then have a loss. i’m not letting my brain really go there, because what’s the point? but i’m still aware that that would be the worst of all the possible outcomes.
please universe: work or don’t, but don’t work for just a minute.
when i left off last friday, i was waiting on the call from the specialty pharmacy about my medications. before i drop that bomb, here’s a little bit about medications and IVF. when undergoing fertility treatment, you’re constrained in which pharmacy you use by your insurance, if you have it, and fertility pharmacies are unforgivable price gougers in the united states (the gas industry has nada on these people). every drug has a “cash price” (what you’d pay out of pocket without using insurance) and a “billed insurance price” (what the pharmacy charges your insurance in hopes of making even more money while appearing to lower your costs–generally 2-4x the cash price)
on a simplified scale, it might look like “we will give you this medication right now for $10, or we can bill your insurance $30, they’ll pay $22, and you pay $8–what a deal!!” if you’re wondering if that’s why drug prices are so high in the us right now, you’d be right.
so as a bcbs subscriber, i was limited to freedom pharmacy for my medication. cny called my prescriptions in and arranged authorizations with my insurance company, and freedom called me to confirm my order. now here’s the fun part: the pharmacy can’t (won’t?) tell you what your medications actually cost until they run your insurance, and they won’t run your insurance until you buy the meds. your insurance company ALSO can’t tell you, because they don’t know what the pharmacy is going to bill them until they do. (how is this legal?)
i will ballpark estimate that up to today i’ve spent 3-4 hours on hold and on phone calls between my doctor, my insurance, and my pharmacy managing my medication plan.
so finally the big moment came. THE REVEAL. my heart was pounding when my phone rang. i’d been hoping it would be less than $8,000, but i had nothing whatsoever to base that on.
and the damage?
$5,186.05.
WHEW. relief (i guess?)
“so,” i casually asked the rep who’d given me my total, “i’m feeling like a glutton for punishment… if that’s what i’m paying, can you tell me how much the insurance company covered?”
(pause)
“yes ma’am. it was nineteen thousand five hundred in coverage.”
mic drop.
NINETEEN THOUSAND FIVE HUNDRED DOLLARS???
“yes ma’am.”
“so you charged me twenty four thousand six hundred eighty six dollars and five cents for one month of medication?????”
“yes ma’am.”
that’s it folks. in today’s america, you can have a car, or you can have one month of IVF medication.
utterly absurd.
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day 3 was spent mostly waiting for my obscene little package to arrive because i had to sign for it. (another privilege point–if it had been a work day, i would have had to take off the whole day just to wait on a box.) i HAUNTED the fedex website.
my 13x13x13 cardboard cube of $25,000 medication arrived at 3:45 pm. i’d wanted to do a funny unboxing video, but when all was said and done, i simply didn’t have the spoons left. my box contains:
(do you see a trend? i’m going to be a swiss cheese!)
and about a thousand syringes, alcohol swabs, and gauze pads.
all of the meds were in a little holding pattern at that point because i couldn’t start taking any until my baseline labs and ultrasounds were done. nothing else to do on day three but marvel at the most expensive package i’d ever received in the mail.
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day four had nothing much to do with ivf, as it was a sunday, but the noteworthy fertility happening was my last (hopefully for a very long time) beer. it was a very good beer (name: grumpalumpagus. kind: high gravity stout) enjoyed with very good people as part of a very good brunch at norway brewing.
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today, day five, was quite busy. i got up at 5:45 to drive to the coast for an 8:30 appointment with the local(ish/er) practice that’s doing my monitoring. i had a transvaginal ultrasound (as unpleasant as it sounds with a wand covered in a condom–i shit you not–at least they let you insert your own). the ultrasound showed that without any assistance, my ovaries are busy making around 29 follicles. normally, the follicles would compete and one would “win”, grow the largest, and release an egg (ovulation), but the point of ivf is to make all of them grow and then harvest lots of eggs in a controlled way. 29 means i’m starting out in a great place and my body has plenty of reserves.
good job, body!
after my uberwanding, i popped to the lab to have two tubes of blood drawn for the 8 or so blood tests that constitute my “baseline” labs. both sets of results were sent to cny “stat” (very quickly), and i received a phone call an hour later (yay, car speaker bluetooth!) from a nurse who gave me the first four days of my meds protocol:
letrozole by mouth once a day doxycycline by mouth twice a day prednisone by mouth twice a day follistim injection in the evening menopur injection in the evening other vitamins and thyroid medication as usual
she also gave my me tentative monitoring appointment schedule: i have to go back to the coast on friday, monday, and wednesday for more ultrasounds and lab work, with the rest of everything tbd based on what my body does in response to the medications. (again with the accessibility piece–this would mean three half-days off of work, last minute, if i had a traditional job.)
monitoring will involve watching all of those little follicles to make sure the stimulants make them grow enough but not too much.
so much wanding. ugh.
this evening, i watched a series of videos showing me how to reconstitute one medication in saline before drawing it up, and how to load another into a dialed dose pen, kind of like an epipen. i spent a lot of time thankful for my midwifery experience with injections–i can’t imagine doing this for a first time without any practice, especially on oneself. both the follistim and the menopur are subcutaneous (under the skin rather than in the muscle), and i had to nerve up to jab myself in the belly twice. it wasn’t nearly as bad as it seemed like it would be. woot!! the follistim pen has a zip pouch, which stephen hilariously now calls my “gear”, and it lives in the fridge. the rest of everything lives spread out in an organized way on the top of a guest room dresser.
so far, i’m excited the doxy isn’t harshing my belly, but i still have loads of preemptive living food to fill my diet and save my gut flora. the prednisone feels absolutely like speed, but i burned off the energy today with a long walk with a friend and her two doggos. the injections weren’t bad–no pain afterward. i know from experience that letrozole won’t make me feel weird for a couple of days.
today something happened to me that hasn’t happened in a LONG time. i got my period, and i was excited about it. ecstatic even. in the world of infertility and loss, bleeding equates to something that’s part grief, part anger, part disappointment, and part anguish (hooray for the vocabulary of emotional granularity!). bleeding is failing. bleeding is brokenness. bleeding is losing. bleeding is quietly lonely. bleeding is starting over… AGAIN.
fun related tidbit: we use the first day of someone’s last menstrual period (their “LMP”) to date the start of a pregnancy because it, unlike conception, is an outwardly obvious sign of what your body is up to. because we do this, the first two weeks of pregnancy you aren’t actually pregnant. “40 weeks” includes the lead-up to ovulation, which often happens around two weeks after someone’s period, so pregnancy isn’t really 40 weeks give or take–it’s more like 38 weeks give or take. the more you knooooooooow!
in the world of infertility, the first day of bleeding is one of the hardest days. it’s not as hard as the bleeding that comes with a loss, but it’s pretty up there. the first day of bleeding can also though, for people undergoing their first round of IVF, be the exciting start of the most controlled and science-y version of “trying” that exists. there has been so much waiting: waiting to decide, waiting to see if we could afford it, waiting for a consult, waiting for lab results, waiting for my midwifery clients to be done giving birth so we could press “go” on our own turn.
in the world of IVF, bleeding can mean loss, but for us today, it means and end to the waiting and the beginning of a bagginsesque adventure.
pushing “go” on day one of my menstrual cycle meant waking up, going “SQUEEEEEE!” with stephen, waiting (impatiently) until cny opened, and starting the whole thing off with a phone call. the nurse i spoke to sounded bored and like she’d rather be anywhere but on the phone with me (nursing burnout is real, y’all), and that left me feeling weirdly deflated and crestfallen. at its core though, it was just a reminder to me to check in with myself, notice what i was feeling, name it, accept it, be curious about it, and move forward holding its hot little hand. oh hi, rogue disappointment–want some coffee? are you hungry?
my lackluster nurse was not thrilled when i asked for her “best guess” at which days i might need to make appointments for monitoring and which days i should book a hotel in albany. *ferris bueller teacher voice*: “i have no idea. it will all depend on your first round of labs and how you respond to the medications.” i feel her pain. friends and loved ones ask me *all the time* how likely i am to be able to do something based on my midwifery call schedule. birth is mysterious. i never have a clue. sometimes though, its easier just to say SOMETHING. make it up. you’ll probably accidentally be right.
she let me know that i will likely be on meds for 10-12 days before the egg retrieval, and that i will likely be able to go home the day after the retrieval procedure. there’s a 3-day window that we’ll need to physically be there in albany, but it’s a bit wobbly, so we’ll book 6 days with wiggle room on both sides and then trim it via the 24-hour cancellation policy at the hotel. (it’s near the 4th, so last minute bookings are a losing gamble.) this is another example of the disappointing role privilege plays in this process. we can do that. if we didn’t have a credit card or partial crowdsourced funding, we couldn’t just book 6 days in a hotel. i’m thankful we can and simultaneously aware that that’s a barrier for people. if i ever win the lottery, y’all, i’ll be passing out funding for this shit like candy. fat people and birth workers get first dibs.
after the convo with nurse dullsville, i uploaded the cny requisition she provided for lab work and ultrasounds to my health portal and called my obgyn practice here in maine to let them know i needed an appointment for this monday. we’re doing what’s called “remote monitoring”, meaning that although the big important bits of IVF (the egg retrieval this month and the embryo transfer the next) are happening in albany, the zillion ultrasounds and blood draws i need to keep an eye on things (twice next week, every other day the week after) will be happening here in maine. my “local” practice is 80 minutes away (yay, rural living!), so that will be A LOT of driving, and, given the current state of affairs, a fortune in gas. it also means that i’ll be doing a ton of calling to beg for last-minute time-sensitive appointments in a busy practice, and that i’ll be counting on them to get stat results to cny each time–two things that are incredibly stressful to me. arg.
monday’s goal will be to obtain what are called “baseline” labs and ultrasounds. the ultrasound will be looking at my ovaries to see how many little follicles (the pockets that hold eggs) are developing on their own, and the blood work measures my estrogen and progesterone (the hormones from the ovaries that build and mature the uterine lining), my luteinizing hormone and follicle stimulating hormone (the hormones from the brain that tell the ovaries to mature eggs and to ovulate), my thyroid stimulating hormone (the rate at which my brain is asking my thyroid to work, or in my case as a person without a thyroid, the appropriateness of my medication dose of thyroid hormone), and hcg (to confirm i’m not currently pregnant (I’m not), which would be terminally harmed by IVF meds). all of this data will be used as comparison to see what all of the medication makes my body do.
monday will be 2.5 hours of driving and half an hour for an appointment, so this will be the first of many spur of the moment needs for appointments. this is another barrier to IVF. you have to be able to take up to half a day off of work at a moment’s notice over and over and over, and then you have to be ready for surgical procedures that also have mysterious, last-minute timing. i can’t imagine trying to do this and having a full time job. i’m having to take a sabbatical from midwifery to make it work, because i can’t attend birth and do this. zero compatibility with the lifestyle. nada.
so as it stands today, we’re a “go” for our one and only IVF cycle. i’m waiting on a phone call from the specialty pharmacy about the cost of my medications after insurance, said medications are being delivered tomorrow, and i’m receiving a meds care plan on monday, alongside my baseline monitoring appointment at my local practice (hooray for leaving here at 6:30am!). i anticipate tomorrow’s post being the world’s weirdest unboxing blog. (for real–the meds list is wild).
day 1? i mean, sort of, but more like year 12. wheeeee!
for folks who have been following along, you know my story through years of no-subjects-off-limits social media posting about my and my partner stephen’s wild ride through the land of infertility. for folks who don’t know me, i’m a certified professional midwife, teacher, and interfaith chaplain who, after more than a decade of companioning others through the transformational experience of family building, is finally resorting to the “big bad” of fertility treatment: IVF.
a huge fan and user of the “least invasive to most invasive” approach to wellness-seeking, i have done it all. i’ve charted, i’ve timed, i’ve “relaxed”, i’ve drastically changed my body composition (twice), i’ve become an active hiker, i’ve taken all the herbs in all the forms and all the supplements in all the doses, i’ve had ultrasounds, i’ve had (LOADS of) blood work, i’ve taken letrozole, i’ve taken clomid, i’ve had testing for tubal patency (not fun), i’ve done IUI (at home with midwives!). there are zero diagnosable problems with my body or my cycles. my partner has has semen analyses that are always normal. around 12% of couples struggle to become pregnant, and of that 12%, we’re part of the 10% who have what’s known as “unexplained infertility”. everything works, except that it doesn’t.
i’ve been pregnant twice (i wrote about the first time here), and neither little bean could stay. i lost her at just over 4 weeks in 2016 and him at almost 7 weeks in 2018. her short presence was a joyous godsend, because it was proof of concept–we could get pregnant. the grief snuck up up me around six months later–as grief does. his stay was much harder, with spotting and cramping throughout the duration, tentative and terrifying trips to the bathroom where there was never not blood, and a 30 minute labor that led to a wee burial on one of my favorite secluded mountaintops. it’s been quite a ride.
because i turned 40 this year, we decided to give one good try at a last-chance effort: in vitro fertilization. insurance isn’t required to cover it (it’s considered elective), and until passage of a new law in 2024, maine isn’t one of the 19 states that thinks and acts otherwise. if we lived in massachusetts, we could try ivf over and over and over and have insurance cover it. alas we do not, and as folks with a homestead and careers rooted in place, moving is neither an option nor a desire.
the average cost to a live birth with ivf, meaning that the procedure works and the pregnancy makes it to the point of viability, is around $34,000. that accounts for the 2+ tries it can take to be successful, though there is no guarantee that it will be. because of the cost, we can afford one try with ivf, and then no more. talk about gambling… the only reason we’re able to do this at all–no joke–is the 107+ donations we’ve received for help. community support is our everything right now, and i’m so humbled and grateful that i don’t really have the words for it. no words. just big feels.
there will be plenty of narrative time throughout the process to fill in informational gaps, but the short of it is that we’re using a practice called cny out of new york for care, both because of cost and because it’s the only place i haven’t experienced horrendous bmi discrimination (more on that later–truuuuuust). back in february, i scheduled an initial consult, and it took until april to be seen. as of right now, i’m waiting on my cycle to start, at which point we press “go” on what will be the weirdest, most involved project stephen and i have ever undertaken. i mean it. it’s a micro-managed full-time job of constant blood work and ultrasounds, crazy meds, weird procedures, and traveling… i already have a 3-inch binder-of-doooooooom and it’s halfway full.
i’m calling today day 1 because i pulled the plug this morning and ordered my medication. cash price is $14,700 (FOR ONE CYCLE), and i’m dying because i have to wait until tomorrow to hear if my insurance covers any of it. i’m putting out $8,000-final-cost vibes to the universe—just sayin… this time next week, i will be shot up and fed up with all sorts of medications from hormones, to antibiotics, to steroids, to ovulation blockers. the list is staggering.
the basic task is going to be to try to get my body to produce as many eggs as possible. when i’m at peak eggy status (not a comfortable existence), we’ll travel to albany, and i’ll have a transvaginal (needle through my vaginal wall) aspiration of all of my eggs under general anesthesia. the eggs will then be hand-inseminated by a tech and will be incubated to see how many of them make it. if we don’t get very many, they’ll freeze our embryos on day 3. if we get lots, we can be a bit more cavalier with them: pushing to day 5 and then genetically testing them for chromosomal normality before freezing. if we have to freeze on day 3, it’s a total gamble how many (if any) will be genetically viable. even in a young person with normal fertility, 20%+ embryos don’t wind up being genetically viable. that’s the biggest cause of normal miscarriage–too many or too few genes. for someone my age, the percentage is MUCH higher.
if we get lots of embryos (read: can afford to lose some along the way) and can push to day 5, they’ll suck a couple of cells off each, test them, and tell us which, if any, are healthy. they can also tell us XX/XY, though we all know that genes are only one part of sex and gender, so there’s still delightful mystery regardless. no matter whether we have day-3 mysteries or day-5 known entities, the embryos will be frozen, we’ll be sent home, and i’ll return the next month for the (much easier) process of embryo transfer. no anesthesia; just a catheter and an embryo (or two. more on that later as well).
side note: embryo cryopreservation is wild–some folks have have 25+ year-old embryos transferred. can you imagine being conceived in 1997 and born in 2022??
so as it stands, we’re in care with cny, have just ordered the obscene medication protocol which will be priced by tomorrow morning and delivered saturday, and are waiting for my period (sometime between tomorrow and tuesday) to push go. i’ll keep posting no-such-thing-as-tmi updates here, so feel free to check back. also, please leave any questions, personal experiences, or woooooooo!s in the comments. i would love this to feel more like a conversation and less like me chattering into the void.
idylls of acadia 