The New Math of Loss

March 30, 2014

You may recall that last Fall submissions were being taken for a book about miscarriage. I mentioned it here. After the movie Return To Zero came out they decided to do a book – an anthology of stories of love and loss to raise awareness.

Well that book, Three Minus One, is now out. My submission was not chosen to be in it. But someone I know on Twitter is in it. Both her Twitter and her blog are private so I won’t link here but I do want to give a big shout out to Lauren! So proud of you! Congrats!

Three Minus One book cover

I had hoped to be a part of this since I still struggle so much with my first pregnancy. But I don’t think the world at large is ready for the darkness that was the Zombabies. Nobody wants to hear about how hard it was to kill your much wanted babies over and over again. I’ve been thinking about them a lot lately as we get closer and closer to SurroFET. I worry that these last two embryos, the rejects of the crop, will not take. And then all my babes will be gone. And then I think about the first two. I think about how beautiful the RE said they were. I think about how hard they fought me to stay alive. And I hope their siblings are just as strong… but with a better sense of direction.

[Also, why are embryo GPSs still not a thing?!]

It’s never been Three Minus One for us. It’s been 2 + 6 -2 -1 -1 = 2. Soon we will find out the end of that equation. Will we be three? Or four? Or will the Six Return to Zero leaving us as two?

Marking Time

May 9, 2013

Despite the fact that I always loved History, dates are not exactly my thing. I do a pretty good job of remembering birthdays and such but I typically pay less attention to other dates. Like anniversaries. Because of this I am likely to eventually forget exact dates of things that are painful – Like EDDs (Estimated Due Dates for those who don’t know) of lost pregnancies and death dates.

Given my propensity to forget these kinds of dates why does the universe choose to mock me by having them coincide with other dates or events that I DO remember (or am slapped in the face with)?

Pregnancy #1 – The Zombabies – We found out the pregnancy was ectopic on Right Guy’s birthday, which we spent in the ER. The EDD for that pregnancy? The day after Mother’s Day. This year, that date is today.

Pregnancy #2 – Tubaby – EDD was exactly one week before Father’s Day.

Pops’ death – He died the day before Father’s Day. Also, he and I had the same birthday.

astronomical clock, prague

Last year I tried like hell to reclaim Right Guy’s birthday and I think I did a decent job of creating new memories. I had spent his previous birthday away from him doing a long distance FET and was actually rather thankful not to have had to face that anniversary with him. So I tried to make up for that, and my body’s failure, last year. There’s hope for reclaiming that day.

As for my birthday, I’ve just decided to move it one day forward or backward each year – whichever is more convenient. That’s been working so far.

But Mother’s Day? And Father’s Day? Absolute shitstorms. Not only does it remind us of what we do not yet have, it’s also a reminder of all we’ve lost along the way.

Where are the holidays that remind you what you have right now?

Oh yeah, Thanksgiving. It’s a looong way off. And I always spent it with Pops.

Despite the negative tone of this post, I am not (yet) freaking out or despondent about the impending Mother’s Day. I don’t know whether that means I’m dealing with things better or if there will be a breakdown that comes out of nowhere.

It seems like infertility is all about time. Right now I just want to throw out all the clocks and all the calendars.

My Beef With the Angels

October 15, 2012

Warning: This is not a happy post. Also, I mean no offense to those of you who have lost babes and call them “angels.”

With all the recent hoopla surrounding Pregnancy and Infant Loss Remembrance Day today I’ve seen a lot of posts over the past two weeks about “Angel Babies” and how to commemorate them. There were all sorts of “angel” items for sale to commemorate your loss. It really started to get to me. On two levels.

Level One: I am not religious.
No offense if you are, but I don’t believe in Angels. Or Heaven. Or God. I don’t think of my lost babes up in Heaven looking down at me. That image gives me no comfort. If it works for you, great. But it actually makes me feel a bit sick. I love my lost babes. I miss them. I mourn them. But I don’t think of them as angels.

Level Two: They are in no way like Angels.
Unless maybe you’re thinking of vengeful Angels. My babes tried to kill me. I don’t love them any less for it. It wasn’t their fault. I don’t blame them – I blame me. But it does make the feelings a lot more complex I think. I spent five months killing my twins. FIVE MONTHS. They fought hard to live. And I fought to live. By killing them. They’re not called Zombabies for nothing. My third babe did not go gently either. I tried to kill it with chemo but in the end I had to have it cut out.

This probably sounds harsh to you. But it’s my reality. I didn’t lose my babes. I killed them.

Of course, I had to. And of course, if I hadn’t, they never would have become infants living and breathing in this world. But that doesn’t change the facts. It doesn’t change the feelings.

As much as I identify with others who have lost babies, I really feel like ectopics are just a whole ‘nother animal. I don’t want to create some “Us vs Them” mentality – we have too much of that already. We need to stick together. But at the same time, I feel completely left out of all this Angel Baby nonsense. And, sometimes, it makes me angry.

But I can get on board with the candles.

Here we are again. October 15th.

This year I am not pregnant on this day. As opposed to the last two years. You can read those posts here: https://foxinthehenhouse.wordpress.com/tag/pregnancy-and-infant-loss-remembrance-day/

Two years ago I was in the process of becoming un-pregnant from ectopic #1. The Zombabies inside me were dying. And fighting it.

One year ago, I was pregnant again and terrified of another ectopic. But on October 15th, 2011 I did not yet know that I was carrying ectopic #2.

At least this year I can say that I am definitively NOT pregnant and therefore not in danger of suffering ectopic #3 on this day. The cycle is broken. As is my uterus.

I honored the Zombabies with a ring. I wear it always. Two emeralds (May birthstone, EDD was May) to represent them.
ring

I have not yet found a way to honor the embaby lost in the lab (Lababy) or the Tubaby from ectopic #2. Although it would seem that I have now finally managed to name them.

The fate of my 2 remaining frosties is uncertain. It would be inadvisable to put them in my uterus.

I remember my lost babes every day. I carry them with me. Sometimes I feel a bit… stupid for doing so. Or overly emotional. I feel like remembering them all the time is perhaps not mentally healthy. And I can only remember them to myself. It’s not really socially acceptable to talk about losing your unborn babies. It’s certainly not polite dinner conversation.

And so I remember them to others here on this blog and on Twitter. And a select few IRL.

I contemplate a remembrance tattoo all the time. But I have yet to find a design.

How do you honor your lost babes?
(Or if you haven’t experienced this loss, what ideas do you have?)

PT(R)SD or IF-PTSD

October 26, 2011

Post Traumatic Reproductive Stress Disorder


Click on the image to read more about PTSD. Also, is it just me, or does she look like Molly Ringwald?

My old RE called me the other day to check on me (she’s so sweet and I will never be able to replace her). We were talking and she said something that I think was meant as half joke/half serious. She said if there were such a thing as Post Traumatic Reproductive Stress Disorder then I had it. Although I’m pretty sure this diagnosis is not officially part of the ICD9/DSM medical codes I think this is a REAL THING. Although my doc was sort of joking… she also sort of wasn’t. She was recognizing that I have been through a TRAUMATIC experience with my girly parts. TWICE.

When I mentioned this on twitter I got quite a response and several people asked me to blog about it. So I am. First, my story. I think most of you have heard my story but here are some old posts.
Raw
The Spiraling Insanity part one

During my most recent “pregnancy” (I struggle to even call it that) I spent my entire 5th week reliving last year’s nightmare. I recently moved and was having A LOT of difficulty finding early pregnancy medical care. My first ectopic pregnancy gave me almost NO symptoms so I was worried that if it happened again, I wouldn’t know to go to the Emergency Room. It’s scary to think that you could actually DIE with little or no warning.

[My apologies if I sound overly dramatic, even I think I sound overly dramatic. But those are the medical facts.]

So I was FREAKING OUT. I couldn’t sleep. I was reliving the nightmare in my head. And being a general pain in the ass to the docs. That abject FEAR is probably why I barely even think of myself as having been pregnant or as having lost another baby. I never allowed myself to even consider the possibility that this pregnancy could work out. Or maybe I’m just still in DENIAL. I’ve been camped out in DENIAL-land since 6w0d when they said it was likely in the tube.

It also doesn’t help that I have some other PTSD on top of all this. I watched my father die a few months ago. I literally watched him struggle for and take his last breath. I stayed up all night giving him morphine and hoping that he was in enough of a narcotic haze to not know how much he was suffering. I still don’t know what he felt – hopefully nothing. But for several months (it’s finally starting to dissipate) I couldn’t think of him without thinking of his last few hours.

So. There you go. I’m a little wonky in the head. Understandably so, I think. But do I have an actual medical/psychiatric condition? I don’t know. But sometimes giving a name to something helps us fight it. That’s why I think those with “Unexplained Infertility” suffer a little more. Having a diagnosis is half the battle of curing the illness.

But I know, that regardless of whether this is officially recognized, it is a real thing. And I know I’m not alone.

Apparently Lisa (of Three Cats and a Baby) has IF PTSD. She writes about it here. Lisa is a CANCER survivor and has lost her uterus. Um… I can’t think of anything more reproductively traumatic. Not only can she not bring herself in to the doc’s office for a much needed check up and Rx refill, she freezes if she even picks up the phone to make the appointment. I can still make phone calls and get myself to the doc. Lisa can’t. I can only hope that little Jay, her long awaited adopted son, provides some comfort to her.

Miss Ohkay is a Recurrent Pregnancy Loss survivor. She also has difficulty making and keeping doctor appointments. She has decided to adopt and it sounds like she may have a baby early next year. But still no doctor appointment.

Waity Katie is a new twitter follower who has also experienced pregnancy loss and urged me to blog about IF PTSD.

Jen (of This Is More Personal) also asked me to write this. To my knowledge Jen has not experienced pregnancy loss. In fact, I’m pretty sure she’s NEVER been pregnant. Which is it’s own traumatic hell. How do you keep going after so many BFNs? For those of us with multiple losses, at some point, we call it quits. It becomes too dangerous, too emotional or even just impossible to continue trying.

****MY SINCEREST APOLOGIES TO JEN. I WAS WRONG. SHE HAS EXPERIENCED A PREGNANCY LOSS. BUT I STAND BY THE STATEMENT THAT YOU DON’T NEED TO HAVE LOST A PREGNANCY TO FEEL TRAUMATIZED.*****

But where do you draw that line when you’ve never seen that second line? The fear of never seeing that second line must be just as crippling as the fear of seeing it after loss.

Anyway, I guess the bottom line here is something we all already know. That infertility bonds us, binds us and stays with us long past any successes or failures we have. Everyone’s story is different but yet we all experience the same emotions. And that is why Jay (of The 2 Week Wait) has EVERY right to blog about #IF even though she is currently pregnant. IF I choose to try again and IF I’m successful, the pain and the trauma I’ve experienced will most certainly not disappear. It’s a part of me. For better or for worse. And I will always be afraid of that pain. And that’s NORMAL. NOT crazy. NORMAL.

All we can do is help each other. So… who wants to make some phone calls for Lisa and Miss Ohkay?

The Doctor Is In

October 23, 2011

After much agony and pain I ended up at the hospital yesterday and had my ectopic pregnancy and right fallopian tube removed. I tried like hell to avoid that but… I did not succeed.

But that’s actually NOT what I want to talk/write about today.
IVF/FET: 2
Pregnancies:2
Ectopics: 2
Surgeries: 2
I’m down (one appendix) one father and one tube.
Me: 0

The stats are too overwhelming to me to deal with at this moment. So I want to NOT think about me. I want to think about YOU. What are YOU going through and how can I help? I really hope I’m taking one for the team so no one else is having to go through anything similar. But I also know there are always some crises, big and small, out there in IF-land. And it really helps ME to help YOU because it takes my mind off ME.

Plus I’m on some really good drugs right now.

The line forms to the left. @StolenEggs is on the job. Right Guy is on call. I might as well be too.

I have been experiencing such a range of emotions this past week as this day approached. Firstly, and this is going to sound bad, I find it very frustrating to see pink everywhere. Pretty much any and every cause that is not Breast Cancer Awareness is completely overshadowed. Don’t get me wrong, Breast Cancer Awareness is important – it’s cancer after all. BUT. BUT.

Breast Cancer doesn’t really need an Awareness month anymore. Everyone is aware of it now. It used to hide in the shadows and no one spoke about it. Just like miscarriage. But that’s not the case anymore. And it’s not even the number one cancer killer for women. You know what is? LUNG cancer. Lung Cancer kills more women (most of whom never smoked) than Breast Cancer. But there’s no Lung Cancer Awareness Month. And Pregnancy & Infant Loss get… a DAY. One whole DAY.

My apologies if it sounds as though I’m poo-pooing Breast Cancer. I just get sick of all the pink all the time. All the solicitations at the grocery store for donations. I don’t see people doing the same for other cancers or Pregnancy & Infant Loss. Perhaps I would feel differently if I had experienced it personally (either myself or someone in my family). But I didn’t. I watched my father die, literally watched him take his last breath and turn cold, of lung cancer just a few months ago. So THAT’S my experience. THAT’S my perspective.

I experienced that loss a mere 6 months after my ectopic loss was finally “complete.” (You may remember that my pregnancy loss took 5-6 months – for those new to the story that’s how long it took my beta to fall back to zero) And now I’m pregnant again and wondering for how long. Wondering if this one is going to make it. Will it turn out to be just as strong as the twins but implanted in the wrong spot and therefore doomed? Or is it in the right spot but just weak? My betas, while technically normal, have not been stellar.

Last year it was difficult to honor my twins’ loss because I had just started to lose them. They were dying but not yet officially gone. I don’t think I even had the official word yet that it was twins at that point (at first they weren’t sure). You can read last year’s post and see that at this time I just had a vague notion of how to honor my babes – with gems. Which I did. I wear them on a ring always now. Emerald is the birthstone fro May when they were due.

But now I’m terrified I’m losing the one I’ve got now. At this point mainly due to LACK of information. I can only concentrate on one loss at a time. One life at a time. My father is dead. My twins are gone. I can only hope that the little one struggling inside me will make it. That the universe will be kind to me. For once this year. But with all the recent loss it’s so hard to hang on the that hope.

My apologies. This was really supposed to be a post about my ectopic loss last year. It’s really just a post about loss in general. And my beef with the pink. By the way, have I mentioned I hate the color pink? It has nothing to do with Breast Cancer, I just don’t like pink.