Apologies to my RSS subscribers

Hi everyone,

Since I usually draw people in with links from my social media, this post will probably only find the eyeballs of those who visit the website manually or subscribe via an RSS reader (and it’s my intention to take it down once I’m done with the work).

I’m going to do some WordPress plug-in testing for a volunteer gig and instead of setting up a sandbox WP I’m just going to add a bunch of junk here and then take it out again. I have no idea if the junky parts will also show up in RSS but if they do, here’s an explanation of what’s going on.

Cheers!

Writing for different audiences

I’ve reached a point in my timeline where I completely stopped taking notes for this blog. I found an online support group which is actually palatable and all my writing has gone there.

It’s very different than writing for the blog. For one thing, it’s real-time. There’s an off-topic thread every day where we talk about everything from that day’s medication side effects to random plans for weekend. Often there’s a small fertility tie in (“I’m on vacation but this cream I’m on means I can’t go swimming”) but not always.

The biggest difference is the audience. We are all so honest and blunt with each other. There’s no such thing as “too much information” or coded language (except for hilarious nicknames like “dildocam” for the internal ultrasounds) and there’s no such thing as a “wrong” emotion to be feeling or even discuss with others. Some of the veterans will warn the newbs about things like early pregnancy test results, and how IVF is so much more diagnostic than it is a surefire solution that will guarantee you a baby. And there are so many anecdotes that are just too graphic for a larger appeal, while they keep us rolling in the aisles in sad-laughing solidarity.

I’ll be composing my entries here based on rereading my posts there. I do consider that account completely apart from the rest of my online presence and it shouldn’t be obviously linkable; I wouldn’t recommend following me there if you could figure it out since I’m in a safe place to be my bitter infertile alter ego, not my fertility awareness outreach blogger persona.

Hopefully I find the right way to translate my experiences from that audience to you, dropping enough of the graphic detail while having enough material to reconstruct our experiences from the time. However there’s a good chance the tone will change, at least slightly. You’ve been warned.

Well, there’s that

Good news: ANA was negative. It’s never lupus*.

* Except for all my online buddies who have lupus.

The things you never get back

A bonus post about why after a year or two you can never really be cured of infertility, even if you eventually manage to have healthy babies.

The money

The money that could have been a family vacation (or three), allowed the house you buy to be just a bit less of a fixer upper, given you a little breathing room to job search a little longer, or hell, to help out others whose need is so much more than yours.

Even if you had the cash on hand, even if you saved up just for this, you can’t help knowing what it could have bought instead of false hope.

The time

Some people choose to be childfree while they’re young; we wanted to be empty nesters while we were still young. And it’s not as though we can enjoy this time together now the same as if we were choosing to and completely innocently thinking we could get pregnant as soon as we wanted to.

Time just keeps turning while we spin our wheels. We get older. Our friends’ kids get older. Our parents get older. That time can’t be got back again. My grandparents were all dead before I turned 20.

The innocence

Of happiness for seeing two lines on a home test, being excited for scans, not worrying if things are might be slightly out of the norm… and of accepting medicine as a practiced thing.

Twice I’ve had home pregnancy tests that didn’t pan out. Meanwhile I hear most walk-ins and family doctors just do a repeat urine test and then tell you when to come back for a doppler. No worrying, no waiting on bidaily blood tests hoping the levels double. If you have never had a loss, you just get happy at two lines and call an OB or midwife.

Not only will I not feel pregnant until the first ultrasound, I’ll never feel like I’m out of the woods. Ever.

And I’ve had one of those experiences that pulls back the curtain on medical “science”. It’s science alright — fiddle with things based on hypotheses and then make conclusions. A medical “practice” is the part I have real trouble with. They have what they think will work, but if it doesn’t, it’s possible for them to be completely stumped. You have to trust that there is no way for them to know, and not just that it’s too expensive for them to find out, or that no one has cared enough to do research to learn about it.

Being pregnant with your friends

Doing appropriate exercises together, co-baby showers, commiserating when you know the other person is in the same boat — all gone. Sure, you might get their stuff as hand-me-downs instead, but at the cost of…

Your friends’ kids and your kids being the same age

It starts bad enough. Your friends are at it before you can be. Maybe they were married later than you, too. But that’s ok, it’s not like you needed to have the oldest. Besides, aforementioned hand-me-downs!

But unless you’re right behind them, that age difference will really start to matter. What kid wants to hang out with kids 3 years younger than them? 5 years younger? 8?

And what about the kids conceived after you started trying? There’s the one who was conceived 5 months after we started. The one that has the exact birthday of the due date of our second chemical pregnancy, the one that really tricked me into thinking it was for real.

The further your kids drift from your friends’ kids in ages, the further you know you’ll end up being from their parents.

The idea that the universe even notices who you are, let alone rewards you for it

Doesn’t need much explanation. If the universe doled out pregnancies as lessons, it would catch the hint when women hid their pregnancies the first or maybe second time, and wouldn’t send them three more after two cases of infanticide. (A link in case you somehow don’t know what I’m talking about, even though these cases pop up at least every 5 years.)

No illusions remain here.

Bonus

All the perfect houses that went on and came off the market while you weren’t sure if you needed 4 bedrooms or not. We found the perfect fixer-upper we could have bought no problem in the summer of 2015 but hesitated and missed our shot.

Jon Stewart, ComicCon, and infertility have more in common than you would think

Waiting for post-IVF follow up

Super-Secret Post
Concerning cycle 43 (approximately April 2015)

In between our cancelled FET and our follow up 6 weeks later we were on the road three times and went to our local ComicCon. To say we kept busy is an understatement.

The first and third outings were road trips back to where we went to university, but the middle trip was 4 days in New York to see a taping of The Daily Show (and for my hubby to see the city for the first time).

Not for the first time, I was ovulating while on vacation. What a fun story that would make! We know where you were conceived! And it’s easier to be on demand while on vacation anyway!

But it turns out that no, vacations are not a magic infertility cure-all, no matter what you might have heard or repeated to others. (The biggest version of this letdown was in our 10th month of trying when we were on vacation in O week right after I had quit my job in a desperate, misguided attempt to “relax”.)

At ComicCon, I let infertility take over my body as a mouthpiece like I always do. I chatted to Jason Mewes to say I was glad he didn’t have any fertility problems after long term drug use now that he’s sober and he and his wife were ready to try. But mostly I told him it was great to see him use his power of vulgarity for awesome (he straight up was like “sperm count” and “waiting for her period so she could go on the pill” which isn’t actually vulgar but not usually topics at scifi convention panels, and nice to see dealt with no-nonsensely). I asked Sean Maher if he and his husband had used a surrogate or if they had adopted after he used an expression like “we got pregnant immediately” in his panel (they adopted and he implied it happened with a snap of fingers… It’s useless to compare adoption across provincial lines, let alone me to a gay celebrity). Both conversations were at the autograph tables, not in the Q&A, but I didn’t want to go up to anyone without something to talk about and it turns out that’s my touchstone.

Too bad I didn’t have anything to ask Jon Stewart or Larry Wilmore re: infertility during their pre-taping Q&As.

My period trolled me by being a day or two late, and me with free pregnancy tests in the mail but not arrived yet (included with the cheap ovulation tests I had ordered). But of course, the non-cure cured nothing, and it was another 12 days until our follow up. Two more cycles gone. We had tried to move up our follow up but there were no appointments significantly earlier enough to save us the extra wasted cycle.

FET #2 from IVF #1

Super-Secret Post
Concerning cycle 42 (approximately March 2015)

Ah yes. Cycle 42. The answer to life, the universe, and everything.

The second frozen embryo transfer had the upside of familiarity going for it. We already knew the protocol and were familiar with all the medication and schedule. This was only the second time ever in our treatments that we were repeating the same thing as the previous cycle, and knew exactly what to expect. (more…)

Trying on a break, and prep for FET2

Super-Secret Post
Concerning cycles 40 and 41 (January and February 2015)

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FET #1 from IVF #1

Super-Secret Post
Concerning cycle 39 (December, 2014)

We were preparing to transfer the first of our two frozen embryos in December. (more…)

IVF Post-Mortem and FET Prep

Super-Secret Post
Concerning end of cycle 38 and beginning of cycle 39 (November, 2014)

Uh…. Hi. Welcome back. Again, I’ve had to reconstruct a lot of details in the present to fill in the sparse notes I have from back in November.

The debrief for our IVF cycle had two sides to it. On the one hand, our appointment was so soon afterwards that we wasted no time at all before starting a frozen embryo transfer (FET) cycle. Since I was on a medicated protocol, I needed an injection at Day -7, and the day we met with the doctor was Day -7. The cycle “between” treatment cycles wasn’t even a wasted cycle as a result. We would be squeezing in the transfer before Christmas. Yay! Something working out for once!

The other side of the coin was that the doctor told us the cause of our embryo die off… which I promptly filed in the back of my head since I was too busy being so happy about the timing having worked out!

We figured we were statistically guaranteed one embryo would make it through thawing given that we had two and they each had a 90% shot at survival.

I miscounted and thought we had exactly enough time for a frozen embryo transfer before the Christmas break with our pregnancy test likely falling on Christmas Eve. We were sent home with no instructions except to call on Day 1 of a new cycle.

Then my period didn’t come and didn’t come. I had some symptoms like my chemical pregnancies and the clinic wanted to check what was going on, so in I went for bloodwork. I was terrified because, before the shot on Day -7, we asked the doctor if it would be counterindicated if we were pregnant, and she said yes. When I got my blood drawn to check for a pregnancy, the on-call doctor said that if I were pregnant at that point, it would be too late to worry about anything.

The test was negative of course. It was a bit neat that they could tell my period would be along soon. It did focus my attention on how I really can’t read my own symptoms anymore, from a combination of lack of data to the fact that we keep screwing with my biology so I can’t even use old data sets anymore.

It came the next day, 4 days late. I called it in but after 3pm on a Saturday so didn’t get a call back until the next morning — at 8:05am on a Sunday, waking us up.

“Do you have your schedule?” the nurse asked. My work schedule? “Uh, I don’t really have a schedule.” “I mean the schedule we gave you.” “… I didn’t get any schedule from you. Any paperwork at all.” “Oh I see… The doctor gave you a shot last time. Ok. Can you get some paper and a pen?” “Sure. … Ok ready with paper and a pen.” “Ok so you know the medication you have at home?” “No. I don’t have any medication with me.” “….. Oh. Ok. We need you to get to the clinic right away. Has your husband learned how to do the intramuscular injections yet?” “No.” “Ok. Please come in this morning.”

A rushed shower, breakfast, and bus trip later we picked up the schedule and the medication but didn’t have an appointment to learn the IM shots for another couple weeks. And because of the delay of my period starting late, the schedule was shifted so that the follow-up blood test would land while we were out of province visiting family at Christmas.

Later that day I had a major breakdown unlike anything I’ve ever experienced before. I wonder now if the four day delay in starting my estrogen supplements was to blame, but I ceased being able to function, and decided I would go to the hospital in the morning if I wasn’t better. I woke up feeling like myself the next day.

[Later I learned that suicidal thoughts are indeed a reported side effect of Lupron. I need to let my doctor know in case someone cares to track these kinds of things.]

Mostly the full impact of our last result from the doctor had settled in in my mind. My eggs, previously uninspected and only evaluated through inference, were found wanting.

The working theory is that the act of stimulation and creation of so many mature follicles spread quality too thinly across a high quantity. If that’s true, then stimulating my ovaries far less (say, to prepare 2 eggs) may have better outcomes for egg quality and therefore embryo quality.

In short, when I asked the doctor if we knew enough now to reevaluate the practicality of aiming for four children, she said that I will likely need to do a round of IVF for every pregnancy.

The fact that IVF won’t act as a way to stock up on embryos has changed our entire outlook. We no longer have our parachute plan of action; we don’t have a guarantee; there’s no drastic measure I can take that will be enough for sure. If we average one baby per IVF attempt, we’ll also spend way more money than we anticipated and I’ll have to put myself through way more… and now that I’d been through an IVF cycle I knew just how much more.

Our dreams of having four children are now foolish fancy.

It had taken awhile to sink in because it had been delivered along with the good news that we’d be able to squeeze in the first FET before Christmas (which now wasn’t quite true either).

Once I’d started to internalize that, and the hopes of being able to work get to the same outcome we always wanted even with this detour were dashed, the familiar self-pity and unfairness sunk in along with it. The knowledge that others are getting pregnant by accident, or neglecting children, while loving families are left unfinished because of bad luck… I’ve never experienced anything else like it.

But for now, we had two frozen embryos to try first.

IVF #1 (October 2014)

Super-Secret Post
Concerning month 37 (approx. October 2014)

tl;dr is at the end (if your instinct is “too long, didn’t read”, there’s a summary)

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