A Severance Letter to My Reproductive System

So I’ve been taking time to sort out all my feelings and such about the information presented to us: that I have a very very low chance of conceiving even with help and an even lower chance of carrying the baby to term. It’s been harder than I expected but I think I’m starting to get over the hurdle. Having to do so while coming off artificial hormones and being bombarded by natural hormones did not help. Basically, there was alot of the getting-weepy-at-kitten-commercials type of thing.

Apparently protecting my own feelings for a long time resulted in being rather cavalier in what I thought I would be cool with: i.e. not being pregnant. On some level I really thought that it would be fine if I was never pregnant as long as I did everything I could to try. In the end, that’s actually still mostly true. Our goal and desire to parent far outweighs our desire to biologically parent. But come on, I’m human, I guess more of me thought it’d be nice to have all the “pregnancy moments” than I thought. I’m doing okay though and moving forward. We are officially pursuing adoption, by which I mean we’re filling out the application for the adoption agency we’ve chosen.  There will likely always be lingering pangs of disappointment but as a few folks have pointed out, once there’s a baby in my arms we will feel complete as a family, despite coming at it from a different angle.

In talking with one of my dearest friends about needing to go through a period of mourning, she suggested that I write a letter to my body. In doing so I would not only address my disappointment with its failings but as she put it, “point out that my heart and mind are stronger and that my life goals won’t be defeated by its failings.”

And so, as part of my…..healings…..I write this letter, firing my body from certain responsibilities.

Dear Reproductive System,

Thank you for your dutiful years of service to the company but we will no longer be needing your full participation at this time. Please consider this letter as an immediate demotion to your previous position within day-to-day operations.

You have served us well in many of your functions but when asked to pursue a deeper commitment in our company’s overall needs and wants, you have not met the expectations that were set before you. The head of our company, in agreement with various other department heads, strongly feels that you were given far more opportunities and avenues to accomplish these goals than many other systems in similar situations. Certainly the systems at other companies have been able to accomplish similar goals without ANY outside assistance or intervention. It would seem that despite the assistance of various outside experts you have thumbed your nose at incorporating their expertise. The head of the company has every intention of moving forward with our overall goals and feels it best to terminate your participation at this time.

We are beginning the process of reviewing outside candidates who, while their origin will come from outside the company, are no doubt ideal candidates for the ultimate position we had to hoped to accomplish with your participation. As it turns out there are numerous other ways to reach the company’s overall goal. So there. Perhaps you were under the assumption that you were the end-all-beat-all way of accomplishing this particular plan of the company. You are not. We have begun to pool our resources and are focussing them on a different process by which we are hopeful and certain to have the success we have hoped for for quite some time. 

If you feel in the future that you would like to be included once again in the accomplishment of this particular goal you are certainly welcome to do so. At any time. Without notifying the head of the company. You may feel free to surprise us at any time in the future by announcing that you are intent on accomplishing the goal through your own devices. However, since we have been informed at this time that this is questionable at best, we will not spend any further emotional or financial resources running at the brick wall you have set before us. Again, you are welcome at anytime to regain the full status and potential your position entails but for now, we ask that you return to your day-to-day tasks and to do them with the normalcy and regularity that you have done so well in the past.

Your desk and all its accoutrement will remain in place for your continued day-to-day use.

With all respect,

Me

Head of Human Resources, Aging Baby Maker, Inc. 

Addendum:

Please read the above with its intended silliness: I fear folks think I’m crying in my soup. I’m doing really well and wrote the above tongue-in-cheek because humor is how I cope…..and because every thing about what we go through with all this is so fucking ridiculous.

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Big Money Big Decisions

We’ve been so kickass lucky up until now that most of our IVF expenses have been covered. That door is closing.

The doctor has recommended pushing through with stims and freezing – after which everything becomes out-of-pocket for us. The math on freezing and storing embryos, a month or two of testing, drugs and an FET cycle (Frozen Embryo Transfer) would run us approximately $7000 (on top of the $1800 out-of-pocket we’ve already spent for uncovered tests and meds since February). That’s a conservative estimate.

$7000

That’s alot of scratch now isn’t it?

Those of you who are stepping onto your “I’ve Been Paying for IVF Out-Of-Pocket All Along” Soapboxes – I get it! I know which side my bread has been buttered on. I also know that without coverage we WOULD NOT have pursued IVF at all.

At all.

So let’s all take a deep breath and proceed….

$7000….and that’s an estimate. $7000 for a less than 10% chance of a positive pregnancy test, a lower chance of carrying to term.

Our meeting with an adoption agency gave us a rough approximate estimate of $30,000 to adopt a child.

So the question is: do we spend $7000, $30,000 or $37,000?

It’s the 3 Little Bears of “Where Should We Spend Our Money?” …..though instead of Too Small, Too Big and Just Right, it’s more like “Yikes!, Holy Crap! and Ah-Ooo-Gah!”

I’ll break down our thoughts:

The 7K for testing/FET feels like a real crapshoot. Not impossible for it to work….but RUAL RUAL slim chances. There’s a feeling that we’d be just throwing that $7000 away.

Doing the testing/FET first would delay starting the adoption process for another 4-5 months, which doesn’t seem right to either of us. If we were to do them both at the same time the potential $37,000 makes my stomach hurt.

So that brings us to our decision.

Which I’ll reveal…….after these commercial messages.

My hubbo and I have talked through it all, from every angle. He doesn’t like everything that IVF entails…shots, tests, driving to lots and lots to appointments, dealing with anxiety laced progesterone dreams…. He hates me having to get biopsies: “I don’t like them going in there and taking parts out.” But he’d support whatever I wanted to try, since my body has to do the heavy lifting. I felt him wanting to let me make the decision and told him it was too big to do alone, I needed to know exactly what he wanted.

Without thinking he said, “I’m ready to move on.”

Just like that.

Move on. Let it go. Mourn never carrying a biological child and look forward with hope to having a family a different way.

I’m not gonna lie: I’m tired. It’s been a long time. 2-1/2 years. And yes, I know some of you have been at it for way longer (and I’m pulling for you every step of the way) but I’m 43 and I’m tired of treading water.

I need some hope. I need to take the path that includes the most hope of us having a family.

IVF/Testing/FET = a known process, a few weeks of discomfort, lots of waiting, not much hope on the other end

Adoption = lots of unknown, likely a long daunting process with lots of waiting, and with lots and lots of hope at end

Monday after we left the doctor’s office my hubbo said “we likely know our best course of action, we just need to come to terms with it.”

So that’s where we are now: preparing for the excitement of adoption while coming to terms with the decision to stop trying to conceive.

And even though it feels right it’s harder than I thought it would be.

More on where I’m at with that when I speak with you next.

 

 

Test Results Equal Shitty News

There’s alot happening all of a sudden – I’m going to break it up into a few posts:

Monday my husband and I sat down with Dr. Hail Mary thinking we were there to ask some last minute questions and then charge into IVF4: The Final Frontier. I had repeated the endometrial receptivity/Beta 3 integrin biopsy on March 31 and those results were already in.

Good news: the Beta 3 integrin was now positive. Bad news: my lining was still out of phase “despite aggressive treatment.” Dr. Hail Mary explained that this meant the cells weren’t getting the message from the progesterone and estrogen and therefore the lining was not receptive to implantation.

Think of it this way: my lining is Quantity over Quality.

Basically: there’s enough lining but implantation is highly improbable in that environment.

He said, “In this business we pay so much attention to egg quality that sometimes we disregard the environment we’ll be putting that embryo into.”

He figures this is the most likely reason I miscarried and have had 3 unsuccessful IUIs and 3 failed IVFs.

Y’all: my eco-system is off.

He doesn’t know why my lining is out of phase. He said it shouldn’t be an age issue and there’s every likelihood that it’s always been this way – meaning I may have had trouble whenever we’d tried to conceive. He’s not sure of that by the way, but it’s a possibility.

Oh and our fertility insurance runs out May 31 (it’s attached to my husband’s contract which ends May 31) so basically we have 8 weeks of coverage left.

It’s always somethin’ am I right?

The doctor recommends more testing cycles to see if he can figure out a) what may be causing the out-of-phase lining and more importantly b) if he can fix it. There’s some trial-and-error involved here since he doesn’t know why his usual methods didn’t fix things.

Given our waining insurance situation he suggested we proceed with our final IVF cycle (insurance covers 4), go through stims, see if there’s anyone to freeze, freeze them, THEN do at least one (if not more) cycle of testing to try to make my lining receptive and then hopefully move forward with a FET (Frozen Embryo Transfer) or perhaps use a gestational carrier (insert the giggles of two midwestern lower middle class people in their 40s with no retirement plan).

Basically we’re looking at a rough estimate of 4ish months (2 months for IVF, 1ish months for testing, 1 cycle for FET) before I can do that transfer….so end of July or August.

He was….not hopeful….pretty matter of fact….and honest in his confusion over why my body doesn’t seem to be playing ball. My husband asked if there’s the possibility that he might not be able to fix this phase issue to which the doctor said, “that is a real possibility.”

It’s not just my age anymore, there’s actual stuff keeping me from getting pregnant.

This pill is far more bitter and harder to swallow than I’d anticipated.

It feels like my already low chances of getting pregnant at 43 just dropped. Alot.

The doctor estimated that a woman with my ovarian reserve has approximately a 10% chance of GETTING pregnant. STAYING pregnant is another matter…..that number is significantly lower.

We’ve been talking alot and mulling over what to do….and I think we know what’s ahead of us.

More on that tomorrow.

 

Helpful Statements That Are Gut Punches

I had a great lady lunch with some friends yesterday that had one bump in the road. It occurred when I talked about starting our final IVF while also seeing an adoption process on the horizon. My dear friend, in trying to show she cared used one of “those phrases” that seem harmless but are in fact, full of harm:

“You know that once you adopt you’ll get pregnant.”

Because she’s my close friend I didn’t feel the need to mask anything and just said, “well actually all this testing is showing us why we’re likely not getting pregnant and it’s because I have a number of things that can affect implantation so as awesome as it would be to just get pregnant, it just doesn’t look like that would happen.” We talked it out and it’s fine, but it definitely showed me that when the time comes that we “go public” I can likely expect more of these statements.

Oof.

I did a quick google search of the phrase “what not to say to an infertile couple” and I got some juicy ones. Here are thoughts on just a few.

“It could be worse, it could be (insert awful disease here)”

Um, thanks? Why don’t we make a Pie chart of other things that could be worse: pooping my pants on an airplane, having 14 mosquito bites for a year in places I can’t itch, falling into a cactus while my naked lady bits are exposed…. This is a fun game!

“just relax and you’ll get pregnant”

I laugh alot, professionally and personally. I also knit, which is my own form of meditation. I like to cook and chop and stir, all very zen activities. Re. Laxed. And hey look, not pregnant.

“at least you’re having fun trying”

Am I? Infertility makes “trying” into math: when to try, when to abstain, when to try alot. Pee on this stick or take your temperature every day to check for ovulation. Plus, you’re tired! Tired for normal life reasons AND there’s something you really want that you’re not getting and that makes you more tired. So no, we’re not rampantly running amok “having fun trying” on top of all the tables and chairs and in closets morning noon and night. (Not that we were before….who do you think I am?)

There so many more ridiculous things that get said by the way – Google them and have a giggle (or a cry). Don’t get me started on the ones that involve God/supreme beings/what the universe wants.

Honestly, we dodged a big bullet by getting married in our 40s – I can count on one hand two fingers the folks who’ve blatantly asked “so, when are we gonna see some kids?” Apparently, getting married late = implied automatic shut down of parental endeavors?

I’ve been at wedding receptions and seen people walk up to the bride and ask “when are you having kids.” I wanted to throat punch on their behalf. (for the record: I didn’t). Btw, it’s usually a craggy old aunt who does the asking. Don’t be the craggy old aunt.

This is second friend who used the “once you adopt you’ll get pregnant” on me. My friends absolutely wanted to help, wanted to show that they cared (alot!), wanted to show that they were hopeful for my success….but just didn’t think about the fact they were saying these phrases to someone who’s been trying too long.

The sad thing is….before I was in this muck, I likely used these phrases, or at the least wouldn’t have thought about the full impact.

So, before you go throwing what you think is a helpful phrase around, consider:

Do you know if they’ve been trying? Do you how long? Do you know them well enough to deal w/the potential anger/sadness you might trigger w/your pretty friggin personal question?

No one MEANS to be insensitive, but man we all step in it sometimes without thinking.

Maybe just have the balls to say, “I’m really sorry. It must be hard to face all this. I don’t really know what to say.”

It’s likely gonna make you an even better friend.

But if I see you at a wedding and you walk up to the bride or groom and ask them….I will find you.

No Laparoscopy for This Lady

So insurance will NOT cover the laparoscopy to look for endometriosis. Shit. Not that I was in any way looking forward to going through a laparoscopy (especially since I have to fly to Boston 2 days later), but it would have been nice to have that information and something to treat if something was there.

Well….my Friday’s now open….anyone wanna catch a movie?

We are repeating the Beta 3 integrin biopsy (super gross) at the end of this cycle/end of the month so we will see if it is again negative or if it’s positive (it can change month to month). I am also taking delestrogen – injectable estrogen – every other night to see if this stronger medicine can take care of the “out of phase” issue with my endometrial lining (build up the quality not just the quantity). So that’s two things we’re hoping to fix with this trial/test cycle.

If that Beta 3 integrin’s negative again they want to treat me as if I have endometriosis: Lupron for 3 months or Birth Control pills with Letrozole/Femara (don’t know how long that would be) to hopefully shrink whatever might be there (might be there because we don’t know if I even have endometriosis because I can’t get an exploratory laparoscopy – Eat a D insurance company) and get the environment more suitable (Beta 3 positive) for implantation and occupation.

Now here’s the pickle: we don’t have that kind of time. My hubbo’s contract is up in a few months and our bells & whistles insurance is tied to that. I.e. our fertility coverage goes away end of May/June-ish – he’s in touch with his HR person to get a firm answer on what timeline we’re looking at.

So….we may have to say Fuck It to all this stuff (remember: “ignore all this info and proceed” was one of the options Dr. Hail Mary gave us) and move forward with an honest-to-goodness-low-probability-of-success-but-giving-it-a-shot-anyway IVF starting next month.

Timeline for now: some bloodwork & ultrasounds on 15th, 20th & 25th to see how body’s responding to delestrogen/progesterone trial cycle, Beta 3 integrin biopsy on 30th or 31st…..then we wait the 10ish days for that test to come back.

AND! We really need to make a decision on when to move forward with the adoption process – we’re not getting any younger and that’s a (probably….potentially) LONG process. The first step is 10-12 weeks of paperwork/interviews to get past the home visit stage….which is the point at which potential birth mothers can start seeing your profile. The woman we met with felt we were great candidates, in part because we have very few limitations on the child we’re looking for – we just need to fill out the application and get going. 

But you know – who wants to drop a few thousand on the start of an adoption process only to find out their IVF worked (Hail Mary!!!). It’s only a few more months of waiting…but I’m feeling antsy about making things happen/wanting to be proactive.

It’s alot. It’s all alot. For the first time I wonder if I’m cracking a bit under the pressure. I’m mostly okay but there are a few more “rain cloud” moments within the day where I’m thinking too much and wondering when the tide will turn. I still have all the faith that we’ll end up with our family – it’s just feeling like it’s taking an awfully long time to get there.

Clearly I need to go that Liam Neeson movie and hope for some throat punching….Friday? Anyone? Chicago? My treat!

 

 

Diagnosis: Numerous Implantation Hurdles

So more tests have rolled in and unfortunately they’ve presented some issues. Luckily we were able to get in with Dr. Hail Mary this morning to get an explanation of what those test results mean and what we should do about them.

While we’re still waiting on the results of the receptivity biopsy, the Beta-3 Integrin biopsy has come back negative…and this is one that you’d rather hear “positive” as a result. Beta-3 integrin helps with implantation….without it, things are…..”tougher” – not impossible, but “tougher.”  Also, they also found out that my endometrial lining is out of phase – meaning, it doesn’t mature at the proper time (this could be causing the negative Beta integrin) which also makes implantation difficult. The negative beta integrin can also be secondary to inflammation – meaning, there could be some endometriosis in there.  (These issues are on top of the elevated Protein C we found out about that can also get in the way of implantation – I’ll take blood thinners for that).

By the way – I am completely asymptomatic for endometriosis, but the doctor roughly 1/3 of all women with endometriosis do not have any symptoms.

He gave us 5 options for how to proceed:

1. Repeat test/trial cycle with a different hormone protocol i.e. injectable estrogen to build up lining and injectable progesterone to mature the lining – see if they can build as hospitable apartment in there.

2. Ignore the results.

3. 3 months of Lupron to shut down system, shrink any endometriosis (if there’s any) that might be causing negative Beta-3 and then try to get pregnant after that.

4. Laparoscopy/hysteroscopy – go in, look for endometriosis, get rid of it if it’s there.

5. Use a gestational carrier.

We found 2 not so logical, 3 not really an option due to our insurance ending in May/June (at least insurance that has fertility coverage, so we need to get this show on the road) and 5 just made us giggle.

So, we’re going to combo-platter 1 and 4: test/trail cycle at the same time as laparoscopy.

If they get in there with the laparoscopy and there’s no endometriosis then we’ll continue the testing/trial cycle by repeating the endometrial biopsy to see if the injectable estrogen/progesterone did the trick re: maturing the endometrium during the necessary window of time for implantation. If they find endometriosis then we’ll end the trial cycle – the doctor figures that would be the cause of the negative Beta3, therefore no need to repeat that biopsy (which was a real joy to do the first time…..cough cough…hey look over there!).

I mean, it’s enough that I gotta stress about making at least one friggin good embryo – now I gotta worry about even being able to build a house that’ll accept a resident!

The laparoscopy is scheduled for next Friday, March 14, so we’ll see what we see then. In the meantime, I start injectable estrogen tonight.

Ah the joys of what we do.

Test Cycle: Results Starting to Roll In

So I’m at the end of the test cycle and we’re starting to learn stuff. Lots of stuff is looking good and thus far there are 3 things that have indicated that I’ll need some tweaking to the protocol:

My protein-C levels are slightly elevated, as are my antiphospholipid antibodies (say that 3 times fast: antiphospholid, antiphopholidaliheid, antiphosphiliphosenfeffer……) thankfully also called APA. This means I have an increased risk of clotting and the elevated levels may cause difficulty with implantation, and could also possibly be a cause of miscarriage. I’ll take a blood thinner to help with this, likely Lovenox. So….yay, one more injection! (I realize that they are just words on a page but I want you to feel the sarcasm…the deep deep chasm of sarcasm).

Also, I have a methylenetetrahydrofolate reductase (MTHFR) deficiency. When the body is MTHFR deficient its ability to absorb folate (also known as vitamin B9), such as folic acid, is inhibited. Folic acid and B9 are both essential to the development and health of the fetus. So, treatment of this involves taking supplemental folic acid or folate and perhaps another vitamin (I didn’t get all that as I was standing in the middle of a grocery store taking notes on the phone – I think I did a fairly decent job otherwise).

It’ll still be another week or so until the last of the blood tests and the biopsy results are in, but so far no deal breakers, all manageable stuff. I did ask the nurse if the above elevated levels and deficiencies could have been part of why I’ve had three embryo transfers and no pregnancies and she said yes. It’s not a definitive answer as to why things haven’t worked yet but it’s at least information…..and information is good.

And, now we know we can do some easy stuff to try to have a different outcome.

Unrelated: I really want to see Non-Stop, the new Liam Neeson movie that comes out this weekend. That man can throw a throat punch and I like to live vicariously through that sort of thing.