…Go!

Well, I’m officially off and running on this final FET.  My start-cycle visit was Monday.

Back in June when I had my saline-infusion sonogram (SIS), Dr. E noted that my ovaries looked as though I had “mild” PCOS.  The “string of pearls” of small cysts that are one of the criteria for PCOS were evident.  I was ovulating based on seeing LH surges and having regular periods, but I knew that in SIS I had the cycle before I conceived M without medical assistance, my ovaries had shown no signs of the “string of pearls”.  I dug out my notes from that time and put myself back on the same medication/supplement regimen with a couple small tweaks (prior to this, I had been using lower doses of the medications/supplements that seemed to get me ovulating but obviously hadn’t totally cleared my ovaries of the cysts).  I hoped that with three to four months, perhaps my ovaries would fall in line.  I figured even if we were using the final frozen embryo as opposed to trying to conceive without medical assistance, the more in-line my hormones got, the better the chance for a good outcome.

I’m happy to say that when the ultrasound tech scanned my ovaries Monday, there were none of the little cysts.  My ovaries looked like normal, healthy ovaries.  It’s interesting – I had wondered if the cycle where M came along was a fluke, but it appears that possibly with the right combination of medications, I may be able to put my PCOS into a sort of remission.  I don’t know if that’s reality, since getting proof would mean serial ultrasounds/blood draws, but it’s certainly hopeful.

I took my first del.estrogen shot Monday night, and that is the thickest medication I’ve ever seen.  As someone who has injected an awful lot of oil-based meds into my rear, that’s saying something.  Not much fun, but at least it’s small amounts of oil (0.3 mL per dose) and only every 4th day.  I started the dexa.methasone Monday night as well.  So far, I’ve been able to sleep (steroids tend to give me insomnia) but I’m only two doses in, so we’ll see.

Next ultrasound/bloodwork is scheduled for Oct. 17 with transfer now tentatively scheduled for Oct. 23.

Fingers crossed.

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Ready, Set…

Last week, I called the RE’s office about a few assorted matters since the FET visits and meds should start fairly shortly (within the next week or so).  First up was my flu shot.  Due to my job, it’s not so much a question of if I’ll get exposed to influenza, it’s a matter of when.  As I’d read over the medication instructions again, it occurred to me that the steroids – designed to weaken the immune system to provide a better chance at implantation for the embryo – might cause my body not to form much of an immune response to the vaccination.

Based on my period-tracking app (which is fairly accurate for me), my cycle is set to commence this weekend, which also concerned me.  Weekends are the worst time to have to start things or call medical offices in general, not to mention I work on the weekends.  I wanted to make sure everything was squared away and I knew who to call and what to expect.

Turned out to be a good thing I checked in.  Dr. E confirmed that the flu shot did need to be obtained before I started the steroids and hopefully in enough time to give my immune system the time to build the antibodies.  That meant the day before leaving on a major trip I was calling pharmacies to see where I could get one.  The one that had vaccine was the one not in my insurance network, so I paid about $41 for something I usually get for free.  Add it onto my running infertility tab, I guess.  Better than getting sick later – if this cycle works, I’m on the steroids until I’m 8 weeks along, which puts me into December, aka flu season, based on the best information I have (the dark part of my mind is grumbling that this is ridiculously optimistic, why would I think this cycle is going to work at all?).

It also transpired that the local office isn’t staffed with a nurse on the weekends currently, just a lab tech and ultrasound tech, so start cycle visits have to go to the main office (around 2 hours away) on Saturday/Sunday.  “I can’t do that,” I said.  The nurse – who knows me well and was at the office through 2013-2014 when I was doing the majority of my cycles and IVF – said that since I know the protocol, can do my injections, and understand when to call if something gets strange, she could do my start cycle visit the week before my period is projected to start and then she’d leave word with the office that I could be seen locally for the ultrasound + blood work.

I’m not sure if I’m comforted by the fact that I knew to call in and check the finer details (because there’s always something) or a little unnerved that I’ve spent this much time doing ART.

Anyway, I had my start cycle visit Tuesday.  That went well, I nailed down the details of exactly which office to call at any point in the weekend if my period starts, and we mapped out as much of the cycle as possible based on my app.  At this point, it’s just a waiting game.

Current Cycle Status

Content note: Final FET feelings + already present kids mentioned.

Well, this cycle is finally starting to become real.  I’ve been going back and forth with the RE’s office to start pricing out drugs and nail down the slippery little details that I’ve discovered can really derail things quickly.  I confirmed that they still open at the same time they used to, that now they do Sunday appointments in my city (it used to be that they only took Sunday checks about 1.5-2 hours away at the main office), and got copies of all the paperwork.  When my period starts this month, I’ll call, get the prescriptions, and order the drugs in preparation for next month, thus outlaying the first actual cash in this endeavor.

I’ve noticed that I’m starting to have a more reasonable reaction to the prices again.  Maybe it’s that I’ve been out of the ART world long enough or that we’ve spent money on other things in the meantime, but I’m keenly aware that what we are spending on this cycle is going to be right around what we paid for our entire upstairs flooring in a high end, water resistant laminate including installation.  I remember when I paid for the flooring and called Arthur to give him the final bill remarking that while it wasn’t cheap, it was about what we’d paid for FET cycle past and – salient point – we weren’t paying for a chance we’d get a floor, we were actually going to receive a floor.

That last sort of sums up the mixed feelings I have bidding farewell to the RE’s office and ART.  I’m really grateful for the fact that IVF brought us older daughter and also cognizant of the immense emotional and financial costs that went into all the cycles.  One of the things that’s hard about ART and IVF is that beyond picking a doctor/office/lab and following the protocol, there’s really very little I could control in the cycle.  I was at once expecting my first IVF to fail (because I’m a defensive pessimist) and also completely shocked when I miscarried (apparently there’s some underlying optimism there after all).  I’ve known for a long time – working in the medical field – that modern medicine as a whole is extraordinarily powerful in some ways/instances, but also falls badly short far more often than some of the glowing articles and incredible stories would have people realize.  Even knowing this, I found it hard to stack up the hopes I had with the grittier, less successful realities.

It’s the end of ART for us.  One way or the other.  I’m almost 37 and it’s time.  Whether or not we see if something breaks loose on our own if the cycle fails is something we’re very undecided on.  Met.formin really does appear to regulate my cycles but in my late 30s, other concerns such as higher miscarriage rates are starting to tick up (and that’s making the enormous presumption that I’d get pregnant at all – certainly not a given with my history).  I’m not going to lie, I have a little bit of the ache these days at the thought of being done, I’d really love it if the cycle worked out, but I can’t tell if that’s a deep, ongoing thing or if it’s happening because I’m immersed in getting ready to try to get pregnant with the FET and if the beta is negative will dissipate with some time.  Despite the occasional achiness, I’m grateful for where we are now.  I have no doubt that regardless of outcomes, life is going to go on and I believe it’s going to be good.

Ticket In Hand

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We had our RE consult today and it did not take me long to realize that in the fast-moving world of reproductive endocrinology, I’m definitely a blast from the past.

When I did my first FET cycle in early 2014, I used Lup.ron, oral estrogen, PIO, baby aspirin, a short burst of Medrol, and valium for the transfer.  Today, the FET we’ll undertake in September/October will involve injected estrogen every four days, PIO twice a day (!), dexamethasone, baby aspirin, medrol, and predisone.

My response: “I JUST got feeling back in all the areas of my butt and now PIO is TWICE A DAY?!”

Apparently, this protocol results in much higher implantation rates.  Dr. E explained that there’s too much variability with oral estrogen to be comfortable – apparently some women really struggle to get levels high enough even with high doses – but with the injections, it’s been much more consistent.  The steroids lower the immune system a bit to allow the embryo to implant and the different types plus longer dose periods than before seem to really help this process more effectively.  No more valium for transfer either.  Two days of taking it easy, like before.

I asked how likely the blastocyst we have in storage was to thaw properly and Dr. E told us since it’s frozen with the newer cryopreservation methods, it’s around 98% certain that we’ll have a transfer.

I am…a little overwhelmed, to be honest.  Not so much by the protocol itself (though it certainly is different than any other fertility protocol I’ve undertaken) but simply by the fact that this is it.  As weird and f—ed up as this sounds, the RE’s office and fertility treatments and reproduction (or lack thereof) have been this huge part of my life for about seven years.  Whether or not this FET or anything else results in a pregnancy, my reproductive years are coming to a close.

I won’t miss the worry, the miscarriages, the fertility treatments, the incredible sadness of failed cycles, the two-week wait, or any of that stuff.  Infertility, high-risk pregnancy, loss, and NICU inflicted real wounds that are still healing and scars that still ache at times.

But there were silver linings that I couldn’t appreciate in the trenches.  Dealing with infertility and the associated complications also moved me from being someone who looked over her shoulder for another person when someone asked for an adult to someone who says “here, me, I’m an adult”.  I can battle with a ferocity I didn’t know was possible and also know when it’s time to walk away from a fight.  I know how to talk to an insurance company, how to marshal my resources, and who to call.

It’s more that I’m letting go of something that consumed vast amounts of time, resources, emotions, and despite the fact that this is, inherently, not a bad thing, it’s a change and a door closing.  It’s moving into an entirely different landscape – where I won’t chart my cycle, pee on OPKs, alternately (depending on where I am in an attempt to get pregnant) hope for or dread my period, or take pregnancy tests.  I’ll get rid of the maternity clothes and the baby stuff.  Labor and Delivery will go back to being a department with no more significance to me than Endoscopy or Medical-Surgical.  I’ll change into whatever lies ahead and deal with it, hopefully gracefully.

It’s strange, though, being here.  It’s like waiting in an airport, ticket in hand, and not knowing exactly where I’m going next or how many transfers or bits of lost luggage, but knowing that my flight will depart soon for somewhere.

This post has been a part of Microblog Mondays.  If you want more, please visit Stirrup Queens‘ blog.  Thanks to Mel for originating and hosting.

The Left Overs

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Last week I finally bit the bullet and made what I plan to be the first in the final series of appointments with my RE, hopefully culminating in a final embryo transfer around early-mid October 2019.  I mean, my RE is a good doctor and I like him, but I truly won’t be sorry to see the end of treatments and the clinic and all the attendant stuff.  I’m looking forward to moving on and coming to end of the infertility journey.

One part of infertility, however, isn’t going to be over anytime soon.  The reason I wound up at a fertility clinic in the first place, PCOS, still factors into my life, health, and daily living.

This is one of the parts of infertility that I really hadn’t considered much when I was in the trenches, mostly because in the trenches, it’s a day-to-day, minute-to-minute battle.  At this point, however, I’ve got a bit of breathing room to consider the future and that future continues to include PCOS.

And PCOS…sucks.

Mostly, it raises my risk of diabetes along with a number of other conditions, which means monitoring and care to ensure that I remain as healthy as possible.  For me, this means a daily dose of met.formin.  While it doesn’t work for all PCOS women, for me, it’s a miracle drug.  When my second RE put me on it prior to my second fresh IVF cycle because at that point, we were throwing everything reasonably possible at the infertility, I noticed my cycles regulated a bit and we got better egg retrieval and embryos.  After I gave birth to my first daughter, I went back on it to attempt to control the PCOS and boost my milk production, then continued on it and was surprised when, over several months, my acne abated and my cycles regulated.  Because PCOS is one of the big wild card conditions of infertility (some PCOS women have a terrible time conceiving while others, surprisingly, don’t have much issue at all), we were overjoyed when this led to our second daughter.

I managed without met.formin until I stopped nursing/pumping for my second daughter, but at that point, the PCOS symptoms returned with a vengeance – acne, wonky cycles, the whole nine yards.  I called my OB/GYN who was fine with putting me back on the met.formin and things have calmed down since.

I’m fortunate when it comes to PCOS because I have a fairly reliable external indicator about whether or not the PCOS is under control: acne.  If I’m breaking out massively, generally, I have cysts on my ovaries and the attendant issues.  I’m also fortunate that (so far) I’ve been able to find treatments that abate the symptoms considerably.

Despite the fact that my OB/GYN is good and I can somewhat see how well controlled my PCOS is, I know that I need a good primary care provider, especially since I’ll be able to stop seeing my RE (who has helped with managing my PCOS and been my back-up with that for years now).  At the moment, I’m starting to work on searching for the right doctor.  PCOS isn’t ending just because my infertility is resolving.

This post is a part of Microblog Mondays.  If you want more, head over to Stirrup Queens’ blog!  Thanks to Mel for originating and hosting.

Thinking Through My IVF/RE Experiences: Part 1

Over the years, I’ve sat down more than once to try to write about my experience with my first RE and IVF in general.  It’s proved trickier than I thought.  Some of it, I’m sure, is that women are socialized not to express certain (negative) emotions.  Some of it is that it seems like something I should be over.  A big part of it is survivor’s guilt.  I mean, I have kids at this point, so it seems sort of ridiculous to complain.

And yet, parts of this story still bother me because they should not have happened.  In real time, I was so deeply invested in the process, I couldn’t really dig into considering them, even in my own head.  I was all about acknowledging that something had happened, but also sort of glossing over at the same time.  At this point, it’s not so much about my personal stuff as entering a conversation about how to improve care for infertility patients in fertility clinics.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What went wrong with the first RE?

I’ve mentioned before on the blog that at the first consult with him, I expressed that I understood with PCOS that wasn’t responding incredibly well to drugs like Clo.mid and Fem.ara, it could take some time to get to the point where I was pregnant and that I had a wedding in June (this was in March) that we’d need to work around.  He sort of smiled and went “Oh, I think I can have you drinking water at that wedding instead of wine.”

I hate to say this, but while the rational part of my brain was going nope, nope, nope, the sad, worried, fearful part of me really wanted to hear that.  Because here was a guy who was confident and felt good about the whole situation.  He brushed away my concerns about being able to come in for ultrasounds during cycles because of my work schedule (“We deal with that all the time”).

Things escalated a little when I got a cyst after my first cycle on injected fertility medications, which I hadn’t realized could happen.  So I had a cancelled cycle and had to rest on birth control for a month.  The next cycle resulted in a huge overstimulation for TI/IUI and was cancelled as well.  I was getting concerned because I was going in for ultrasounds quite a bit – which hugely negatively impacted my work schedule, contrary to my doctor’s reassurances at the initial visit.  I then did a cycle with Fem.ara + injected meds, which was cancelled by a different doctor in the practice due to under-response (my doctor was on vacation) and told to consult with my doctor when he got back.  It was late June by this time.

My doctor was hard to schedule with because he was “so busy” according to the clinic.  We agreed to a phone consult.  My doctor told me he wouldn’t have cancelled that cycle, would rebate my clinic fees (which we appreciated) and would personally supervise my next cycle.  “Good,” I told him, “because my period is starting.”  We booked the next cycle and I started shortly thereafter.  A week later, I was told by the nurse at the clinic that one of the other doctors would review my lab/ultrasound results because my doctor was on vacation.  I was furious.

The July cycle went wonderfully, a really good stim, but I didn’t get pregnant.  I asked to talk to my doctor again, was able to get another phone consult, and expressed that I was a bit upset he hadn’t personally monitored my cycle as he had promised.  He basically told me that he got to go on vacation and implied that my expectation that he would personally monitor my cycle was expecting far too much.  He was so convincing, I remember doubting my memory and asking my husband if he too had heard the doctor promise to monitor the cycle personally.  My husband was certain he’d heard the doctor say that too.

We decided to move to IVF because we were losing a *lot* of money on drugs, fees, and lost work for cycles that were being cancelled.  It was obvious that my ovaries were super touchy and didn’t necessarily respond predictably.  I was going in a lot for monitoring.  We figured that if we did IVF, we’d be able to do one cycle with all the monitoring and have a higher chance of pregnancy.  I again phone consulted with my doctor in late August, explained to him that I had started a new job, and that we were thinking IVF.  I had planned to possibly do the IVF in February or March of the next year and settle into my new job.  “We could get you in this fall,” my doctor told me.  Because I really, really wanted to be pregnant, I agreed.  I explained what I did at work and asked if there was anything I should know about IVF that would affect my job differently than any other TI/IUI cycle with injected meds.  He told me to plan to take one day off for egg retrieval and two days for transfer.

A couple weeks later, I called the clinic to finalize some details and the nurse mentioned in passing that I would have a 25 lb lifting restriction and restrictions on bending.  My job involves a lot of lifting and bending.  I just about hit the roof.  But my doctor was out of the country on a 3-week mission trip and I had to make decisions right then or delay the cycle.  We had already scraped together the money and I was desperate.  I made a poor choice and went ahead.

The cycle proceeded, I was very anxious, and 15 eggs were retrieved.  The day after my egg retrieval I went back to my job, where I would be on my feet for 8 busy hours.  I had to leave partway through the shift because I was in so much pain.  Two 3-day embryos were transferred, 2 were frozen, and I went home to wait.  I had my beta a day early because my husband and I were both off work that day.  Though the clinic nurses called me to tell me I had a positive beta and was pregnant, my doctor also called me personally to congratulate me.  I appreciated that enormously.

Of course, I got googling (ugh) and realized that even for the day it had been done, my beta seemed…low.  But it doubled appropriately, then exploded.  Even so, I could not shake a nagging feeling that I didn’t “feel” pregnant at all.  Nothing.  No tender breasts, no nausea, nothing.  When I went for my first ultrasound with a different practice doctor, the doctor found that I had 2 gestational sacs, both with something inside but only one with a heartbeat.  The next week I went for another ultrasound with my doctor to check on the one with no heartbeat to see what was going on.  Still no heartbeat in the one, but a beautiful, perfect heartbeat in the other.  He was effusive, excited, and told me to send him photos.

The bad feeling never went away.  Finally one weekend, I found myself almost hysterical with anxiety.  I knew something was wrong.  I called the clinic Monday and they scheduled me for a scan to reassure me (with one of the other doctors in the practice, my doctor wasn’t at my location that day).  I remember feeling the cold wash over when I saw the baby come into view.  I knew there was no flickering of a heartbeat, and the ultrasound tech’s immediate “I need to go get the doctor” told me everything I needed to know.

My doctor never called.  Never said a word.  Never told me how sorry he was that I’d miscarried.

Do you blame your first RE for the miscarriage?

Not at all.  I had known in my gut something wasn’t quite right from the start and unfortunately, miscarriages aren’t particularly uncommon.

In hindsight, are there some things you would have done differently?

I would have changed doctors after the situation where he told me he would personally monitor my cycle and then didn’t – particularly after he tried to play it up like he never would have said such a thing.  I work in healthcare.  It is totally good for healthcare workers to take breaks, vacations, etc.  I absolutely support that need.  I also totally understand that emergencies happen, but based on what the nurses said at the time, they specifically said vacation and he later confirmed that.  There is absolutely nothing wrong with taking vacation.  But I had/have a huge problem with the dishonesty.  The truth is, I suspect that he just completely forgot what he said to me and really didn’t care.

I really regret not putting the brakes on that first IVF cycle.  It made things much more stressful at work (even though I had an extremely supportive boss and coworkers, thankfully) and once I realized that my doctor (again) hadn’t been 100% forthcoming with me, I wish I had insisted on waiting until I saw him to talk about the situation to do something as major and expensive as IVF.

I wish I had listened to the part of my brain that threw up the red flag in our first consult instead of playing it off as a bit of a misspeak and proceeded with more caution.

One other thing that, in hindsight, would have been good would have been getting a second opinion from a different RE before going for IVF (it’s worth noting that my first RE did not push IVF for us – we were spending so much on TI/IUI cycles that by the time we’d gone through a few, we were getting to the point where we couldn’t keep doing those for the lower chance of pregnancy, so we brought it up).  I was really intimidated by the idea of finding someone (the clinic I went to was the only one that had a local satellite office).  But even if I’d needed to go to the city where the main office was located or somewhere else entirely, I wish I had had someone review my chart/tests/treatments to that point just to sort of double-check things.

What are some things you would have wanted to see from your first RE?

The other day, Mel at Stirrup Queens posted a link to a project about the worst things people said to women who miscarried or had stillbirths.  I know, unfortunately, exactly what my chalkboard would say:

“Not one %$#%& thing.  Absolute silence.”

It still makes me really angry that my doctor could take the time out of his “busy” schedule to call me and congratulate me on being pregnant but when I miscarried, he couldn’t be bothered to take three minutes to say “I heard.  I’m so sorry for your loss.”  This is basic.  It’s not an onerous request, and I would argue that it’s an essential part of reproductive healthcare.

I also would have appreciated it if he had been much more careful when he was advising me what to expect from IVF.  He did not tell me about the lifting/bending restrictions, which were incredibly relevant to my job that I had told him about (I think he figured the nurses would go over IVF instructions and didn’t think it was his job).  I am also really frustrated that he didn’t encourage me to take a day off after the egg retrieval, especially since he knew I didn’t/don’t work a desk job where I might be able to take time to sit down.  I was in a lot of pain as a result.

Confidence can be a good thing, but I felt like his statement about water at the wedding instead of wine wasn’t a helpful thing to say.  It gave me some unrealistic expectations for the process/timeline and honestly, I felt horrible – like I had done something wrong – when I wasn’t pregnant by the time of that wedding.

He also came across as pretty dismissive when I would ask about how the various treatments would affect work or my life.  These were reasonable questions on my part and should have been treated/answered seriously.

 

Planning to have Part 2 coming soon…

Flipping The Script: Solidarity, not Pressure

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When I was actively going through infertility and treatment, I heard a lot of stories.  I think everyone who goes through any sort of medical or social crisis hears stuff like this, you know, the “the doctors told them they’d never get pregnant/recover/etc., but they did!”  Sometimes this was helpful, particularly when related firsthand by the person the story had happened to, and often, those storytellers (whether in person or on blogs) would point out that while it had worked for them, they knew it wasn’t necessarily going to work that way for others.  It was solidarity, not inspiration.

Unfortunately, this wasn’t always the case.  Sometimes the stories were told more prescriptively (often by people that they hadn’t happened to), in the “if you just hang on, it will happen!” or “if you do _______, you’ll have a baby!”  Often, it occurred when I was already beating myself up and wondering what I could have done differently or when we were making painful decisions whether or not to continue treatment.  Those stories made me feel guilty, my decisions unaccepted, and left me second-guessing whether or not I’d done “enough”.

I’ve lurked this year for National Infertility Awareness Week, mostly because reading everyone else’s blog posts proved interesting and the topic – “Flip the Script” – is one I’ve had to mull over a bit.  Finally, though, I’ve realized the script I want to flip: be careful with stories.

A couple of years ago, I realized I’d become that cliché, walking urban legend of infertility stories: IVF works on the third embryo transfer after losses, rare, tragic complications, and out of that, a beautiful, healthy child.  Getting spontaneously pregnant with my second with no interventions or treatments only added to it.

I’m grateful for how things worked out.  But it is by the most bizarre circumstances and strange, against-the-odds events that I am where I am in life right now.  There is absolutely nothing that is able to be generalized to someone else struggling with infertility.

It’s not because of my hard work.  It’s not because of my persistence.  It’s not because I’m somehow “special”.  It’s not because of my good attitude or positive thinking (please, ask anyone in my life – I did not accept infertility/PCOS with any grace whatsoever, still dislike many pregnancy announcements/going to other people’s baby showers except under special circumstances, and hated pretty much every moment of treatment).  It’s not because of “baby dust”.  It’s not because I deserved it more than anyone else.

Truthfully, I have no idea why things worked out the way they did.  I’m grateful, but I really don’t have an answer to the “why/how”.  And I resent the idea that if things had not worked, I would have been any less worthy.

Basically, what I’m saying is this: I hope no one (including me) ever uses my story as a cudgel or as a prescription or as a “this could be you too if you just keep trying!”  Because anyone who is struggling with infertility, needs to take a break, or needs to consider their options (including resolving without children), does not need that pressure or guilt.  It’s great to tell our stories and truths.  But there’s a way to do it without generalizing out-of-the-ordinary happenings to others or giving false hope.

Let’s flip that script, straight up.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.