Co...cour...courage!

Sheeeeeeee's Baaaaack! Yes, dusted off and primped up, Little Miss Positive is out of the closet. Thanks to peesticksandstones for kicking her out of her hiding. There are a lot of reasons right now that Little Miss Positive is needed, but one very obvious reason is that I am scared. I'm scared of a lot of bad things happening and I'm scared because I've made a decision that puts everything at risk again. I've been accepted into a shared risk program at my new clinic and we've decided to try one last time on me as we wait for things to fall into place with a surrogate. So this means I'm on birth control now waiting to see if IVF#4 will actually happen in September. 

In the midst of this scary place, it's good to meet my old friend Little Miss Positive. We've been through a lot together. She was on my shit list for awhile after my recent ectopic disaster, but I've come to forgive and forget. Plus, I really need her now. I can see that fear is strangling me on a regular basis. It's taken hold of my controls and put me on autopilot. I fear I'm not doing my job right. I fear I'm losing my friends because of this isolation. I fear that my husband is going to get so fed up with my negativity. I fear all over again the IVF nightmares of another loss, especially another ectopic. I fear I will never get a surrogate match or worse it will fail in a surrogate. I am not able to stop these thoughts. So clearly I am in need of courage and in my recent search for it I couldn't seem to find that yellow brick road.

But I reached a turning point last week. I had a frenzied crazy hysterical conversation with my husband about my fears. I cornered him for yet another discussion on our next steps. I found myself over and over again trying to beat down his positivity by playing devil's advocate- What if I get another ectopic? What if the pregnancy gets complicated and my life is in danger? What if it's a waste of time? Blah, blah, blah. He got really upset with me and asked why I was trying to take away his hope. As you can imagine, I felt awful at that point. I explained that this is the fear talking and it's taken control of me. He responded with a very simple yet effective answer.

He said, "Courage is a decision."

"Oh..."[ long pause] "You're right," I said. 

Is it really that simple? I think for right now it is that simple. That seemed to burst the fear bubble, perhaps with the idea that even though I can't control outcomes I can control my decisions. I have a choice to go down so many scary roads and yet I have decided to have courage. I have decided to be positive again. I have to decide that I can handle more bad things happening. So that's what I am doing now. Courage isn't going to be handed to me by someone else. I'm the cowardly lion, that's for sure, but I guess I have to look for that Emerald City of Oz somewhere inside me. 

An Outlaw called "Intended Parent"

I never quite thought baby making for me would enter this new terrain of law, morality, and intention. Who knew I would have to add lawyer to my long list of reproductive attendants. Isn't doctor, nurse, IVF coordinator, embryologist, pharmacist, blood technician, early morning cab drivers, fertility yoga instructor, acupuncturist, insurance representative, and surrogacy agency enough?

I, as an "Intended Parent," have every intention of having a baby. Is that so wrong? Did I ever think I'd have to be on the run, like some bandit outlaw? For those who haven't had the pleasure of cracking the shell of surrogacy, every state of our United States has a particular opinion on surrogacy that dictates how and whether it can be done. (Click here to see a breakdown of state surrogacy laws) Unfortunately, my state of New York may accept all sorts of characters within its borders but it does not allow for surrogacy. So the story goes that in July of 1993, the legislature passed Article 8, Section 122 of the Domestic Relations Laws of New York. This law states that surrogate parenting agreements in New York are void, unenforceable and against public policy.

So now that I've been long barred from the natural mommy club, and slowly not qualifying for the IVF-on-my-own body club, I'm not only barred from my own body, I'm now barred from reproducing in my own state. My marginalized status seems to be becoming more and more remote. I'm not sure where I will be at the end of this - Siberia? My days are filled with waiting for a surrogate match and contemplating one last IVF on myself. I've felt lonely these days as I used to be a bulletin board whore - joining every type of buddy group from immune issues, to tubal infertility, to pregnancy loss, to repeat pregnancy loss, to lining issues, to ectopic survivors, and now surrogacy. But I'm not sure where I fit in on the bulletin boards anymore. If there was a group called "outlaws" or "road less traveled" or simply "Siberia" then I might join. 

But in my banishment, I realize this is where "intention" has the most profound meaning. As I feel in so many ways already labeled, I need to get used to my newest title of intended parent. Intention involves stretching, bending of the mind toward a goal, determination, purpose, and design. I'm running with my ball and chain out to sweeter and freer states that will let me put my embryos into another dear lady's uterus. Intent is pretty darn significant in a court of law. So if I face a jury of my fertile peers, they must remember that foresight and recklessness shouldn't be equated with intent. Don't condemn me if I don't have the foresight to see what pain lies ahead of me. Don't handcuff me if my choice to use a surrogate seems reckless. But if my crime is the intention to be a mother, intention to raise a child with love, intention to build a family, then I'm ready for my sentencing. 

Scrapbook of Infertility Memories

Most people when they think of scrapbooking think of creative ladies armed with a pair of scissors, a glue stick, and collection of colorful papers, photos and mementos ready to be collaged together. They will gleefully cut and paste the "best of-s" and favorite moments of a lovely vacation trip, a family history, or a precious baby's first year. I, on the other hand, am required by my agency to create a scrapbook to give to a potential surrogate telling her who we are and why we need her help to make a baby. 

So I spent last week collecting photos of me and my husband in our various life activities along with a letter telling our story. Now it's surreal enough to step outside yourself to tell a stranger why we are worthy of her help, but it's also really odd to read "my story." All us bloggers are writing regularly about our stories, but to read a summary story about myself was like being a third person looking at me and my husband and how insane it has been. It wasn't emotional, it was almost like I was reading someone else's story and thinking, "Wow that's damn sad." 

To make things worse, they require FIVE copies of the scrapbook. So once I finished one I became a scrapbook sweatshop and cranked out four more copies. By then, you really feel like you are reading a pre-packaged storybook about a seemingly happy-go-lucky couple whose been really shit on. 

But if I were going to be true to the craft of scrapbooking and didn't have to worry about freaking out someone, my keepsake memories would go well beyond a letter and some photos of me and my husband. Mine would have a title on the cover saying "The Barren Years." I would maybe have a smattering of photos of all the embryos transferred in me with captions, "This one lodged in my right tube," "This was lodged in my left tube," "This one implanted in my uterus but decided not to develop anymore after week 6." And then I do some cut outs from my fertility clinic bills in the shape of flowers and paste them against some pretty pink paper, then maybe a couple syringes to glue on with some ribbons, and for sure a rip out from my progesterone and menopur boxes, and if I could manage it, I would get a hand print from my doctor to show what's been in my uterus through the years. 

What insanely dark things could you put in your scrapbook?

I wish, I wish upon a star. Oh wait, I'm just dreaming

Sing along to the tune of "When you wish upon a star"

When you wish upon a star, makes no difference who you are
Anything your uterus desires will come to you

If you're sick of IVF dreams, no request is too extreme
When you wish upon a star as infertiles do

Is fate kind? Maybe it can happen naturally?
The sweet fulfillment of our secret longing

Like a bolt out of the blue, your period steps in
and fucks with you
When you wish upon a star, am I a damn fool?

Fuck fuck, I got my god damn period today. How many of you still dream of having a natural pregnancy? As absurd and as impossible as that seems, I am sad to say that I still do. It's pretty laughable that there is even one ounce of hope for this since trying the old fashion way has never amounted to anything. I've only gotten pregnant with IVF. Even though I am suppose to be "on break" waiting for my surrogacy match, I am all too aware of when I am ovulating, when my LH surge is, when I might have implantation, when I feel every cramp in my body - praying it's not my period coming. So much for trying to forget about getting pregnant. I am all too aware of my hopes for somehow getting out of this hell hole sooner than later.

Against my better judgement, there is this little evil voice in me that keeps saying, "This is all bullshit and you are just going to get pregnant on your own." Even though I scoff at all the urban legends of people adopting or using a surrogate and then getting pregnant naturally afterwards or women doing years of IVF and then falling pregnant after quitting, I still have this childlike wish for impossible things. How many of us have heard these stories from people trying to comfort us even though this presumes somehow this is all our fault because we are apparently overly obsessed with our fertility. Most of the time these stories of oops-we-got-pregnant-naturally-after-all end up passing around because they are so unusual, not because they are common. But I find myself buying into that crap sometimes and thinking that this could happen to me. As soon as I get these ridiculous thoughts in my brain, I know I have already cancelled out the chance of this oops-natural-pregnancy just by the fact of being aware of it. My guess is that anyone who actually has one of those never truly expected it or hoped for it every second of their cycle. I've got to get this fantasy out of me. I can't keep feeling sad when I get my period. It's like I've regressed to my early days of trying naturally and feeling that pain every time the first red splotch appears, warning me of the blood flow to come. So I need to stop dreaming and wishing upon a star. There aren't even any stars in my Manhattan sky, just a lot of haze and heat.

A Disease of One's Own

Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. From Greek ἴδιος, idios (one's own) + παθος, pathos (suffering), it means approximately "a disease of its own kind."

A simple word can be quite powerful. All that I needed was a letter from my RE stating my fertility history so my surrogacy agency could have it on record. The agency prefers to have the RE state that he has advised me to pursue surrogacy but since my case is so gray they told me just a fertility history would suffice. So I had told my RE that I just need my fertility history stated in a letter to give to the surrogacy agency. When I received my RE's letter in the mail I expected to see just the review of my three tragic IVFs on paper, typed out before me as another confirmation of my story. But at the end of his recap, my RE stated, "Due to idiopathic uterine defects, it appears that [my name] will not be able to carry a pregnancy to term."

Whoah! At first I felt sort of stunned by this. All I could look at were the words "will not be able to carry." Was he just saying this so the surrogacy agency would work with me? Did he finally have a diagnosis for me and why had I not heard it before? Why was I so hurt by the wording? Why did I even care if I want to do surrogacy anyway? Clearly I was still holding on to some hope that I could carry a pregnancy. All the REs I talked to never made it so permanent by declaring I cannot carry. The uncertainty of my case made all of them assume I still had a chance verses assuming I no longer had a chance. I guess I wanted to feel like I wasn't forced to choose surrogacy, but I was making a choice to spare my body potential pain. It wasn't an issue of "can't" but "won't." 

But then I turned to the word idiopathic. What the hell did that mean? And then I realized how little it really means. It essentially describes my entire experience with baby making. It's been my "own suffering" due to unknown cause. I have my very own special disease. If I were Virgina Woolf, my book would be called "A Disease of One's Own." All this to say that it's the medical world's total cop out term. So unscientific. So obscure. So unanswerable. So lacking cause. It points to that space where all the brains, teaching, higher education, and fancy degrees are meaningless. It's a diagnosis that says nothing. I read online that in the book The Human Body by Isaac Asimov, he comments that the term "idiopathic" is a "A high-flown term to conceal ignorance." I also read that in the television show House, the main character says the word "comes from the Latin, meaning 'we're idiots, because we don't know what's causing it.'"

So yes, due to my idiopathic bad luck, my idiopathic losses, my idiopathic uterus, my idiopathic fallopian tubes, my idiopathic life, I've moved on to surrogacy -- but for me, not for the diagnosis. It's the big unknown whether I could ever carry myself but I am reminded that we are beyond that question now. I realized I still hold out hope that I could carry someday but right now it's just not feeling like the right move. But wouldn't it be great if this word could actually be of some use to me? Could it be loosely thrown around explaining myself to stupid fertile people? For instance:

"Oh, you asked when will we have kids? Due to idiopathic uterine defects we are a little delayed on that front."

"Oh, you want me to come to your baby shower? Due to my idiopathic uterine defects my RSVP is NO."

"Oh, you are pregnant again? Well, I have idiopathic uterine defects so would you mind fucking off?"

Good plumbing. Why the clogs?

As I wait patiently for my surrogacy agency contracts to arrive in the mail, we had the thought that we could possibly fit one IVF in this summer to freeze our embryos in preparation for the surrogate. We could sign on with this agency now and while we wait for a surrogate match, we could fit in an egg retrieval. This gave me that bizarre satisfaction of not wasting time. This cycle could give us a sense of how this new RE and new protocol work for my egg production. Maybe we could do PGD and see it as a test round? Maybe we can get into their shared risk program? But most of all, maybe this will ensure that once my surrogate is ready we can transfer those embryos immediately. Saving time is my addiction. Gotta have it. Of course there is a small part of me that thinks if we got more than 3 good embryos in this prep round that I would be tempted to just put one in me for the hell of it? If I get a BFP and it fails or BFN then I still have the other embryos on ice for the surrogate? Is this crazy talk?

It all seems comforting to cover all my bases. But it still forces me to think about plumbing. My plumbing. The two clogs I had this year were not to be taken lightly. Since I might be tempted to transfer one in me (if circumstances seem right),  I opted to follow my new REs request to do another HSG exam. I had done one in 2006 with normal results which is why we never imagined ectopics being a problem. But I figured the health of my tubes has probably changed dramatically since the two IVF ectopics and the surgery. 

So naturally when I raced up to the radiology center this morning I was bracing myself for the results of bad rusty pipes - the kind that a plumber would recommend ditching altogether. As I worked out all my insurance and logistical medical mess with the front desk, a woman sitting next to me said, "Did you take any motrin?" This was the secret handshake needed for us to know that we both were infertile. We exchanged horror stories and then she was called in. Then I was called in. As I waited in my blue gown with the bottom half of my birthday suit, the same woman came out shaking. She told me both her tubes were blocked and that she screamed in pain. So then I really got scared - scared of the results and scared of the pain. I had gotten a little cocky since the last HSG was painless and also with all this IVF crap making me feel like you could stick an elephant in there and I will be okay. But suddenly the panic set in. 

Noticing my face falling, she asked again, "Did you take motrin?" 

I told her in a higher pitch than normal, "Yes, but an hour ago so maybe it is wearing off?" 

She quickly grabbed her motrin bottle out of her purse and gave me two tablets. "Take it!" she commanded. 

With no water in sight and my pathetic inability to swallow pills I went into survival mode and just starting chewing up those motrin pills like prey running from its predator. 

As I was called in and briefed by the doctor, he nodded and sighed, presumably concerned over my two ectopics and what pain this exam might cause me. "Not a good sign," I thought. As they lay me on the table and I put my legs on the extremely high stirrups, they strapped my feet in - doubly not a good sign. Clearly people flail around in pain during this. 

But like many suspense dramas, lead up can be way scarier than what we see behind the curtain. The ink went up beautifully into both my tubes with zero pain and the doctor was in and out in less than 5 minutes. They were amazed, as am I, at how good my plumbing is after such trauma. I have scoured the internet to find others like me who have survived two IVF ectopics and still have both tubes. I'm a rare alien breed. It's hard enough to find someone with two IVF ectopics, but even harder to find one whose kept their tubes. Most people I meet online with ectopics I hear that their tube ruptured causing the loss of a tube. Others have elected to take them out because of damage. But me, my blessing was I got away clean. Sure I could do more advanced tests but this is the third time I've been told that my tubes look healthy. So of course this continues the million dollar question of why does my good plumbing get clogs? Will it get more clogs? Will I ultimately have to tear out my good plumbing after continual unexplainable clogs? For god sakes, what makes a perfectly good tube let an embryo get stuck in there? We'll never know clearly, and once again I have that twisted satisfaction/frustration of being "normal" but not really normal. 

The Start or the End?

I know. Where have I been? I was all revved up for metamorphosis and my butterflying sort of got caught in a lengthy net - a sort of Hamlet moment of  "To use a surrogate, or not use a surrogate: That is the question."

I'll get to how I answered that question a little later. But first, my little craft glue project. I know maybe you were expecting some great mittens and scarves or some crochet throw, but it's been like a bazillion degrees in New York so the thought of such things makes me want to vomit. Sooooo, I went in a different direction. Inspiration can come from all over the place and this time it came from a soon-to-be expired vitamin bottle.

My little craft glue project represents what I title: "The Start or the End?" Now we all know the first tiny little invasive step we take with our bodies when we begin to dream of our beautiful baby is the good old folic acid increase. Some go straight for the rocket ship of prenatals, but I went for a wimpier mix of multi-vitamins and folic acid tablets. I started this regimen in December 2005. I took those damn pills everyday with the few exceptions of bleeding/miscarriage/ectopic times. The folic acid was just the beginning of my hopes for having a baby. I've been off duty since my last IVF disaster and those pills have remained in the pantry untouched. So I've found a better use for them.

Now for all the folic acid pills I have popped, I would expect a baby by now with a brain size of Texas with absolutely no neural tube defects. So my little glue project is here to represent this fantasy of "Folic Acid Woman=Folic Acid Baby." The irony is clear. I have no baby. My folic acid pills are about to reach their end date and so have I expired too? Does this starter vitamin really represent the end of an era, the end of innocence, the end of carrying my own child? 

This brings me to what we've finally come to decide. After much flip flopping, agony, stress, and opinion polls among family and close friends, I think we are going to move forward with a surrogate. The start and end points of infertility get so blurred along the way. You might be ending one kind of treatment and then starting a new treatment. You might be ending IUIs and starting IVF. You might be ending using your own body and starting a better road in another body. We are all starting and ending on a regular basis in life. After being paralyzed by indecision, neither starting nor ending anything, I've forced myself to both start and end with a decision. I'm still not sure we are doing the right thing. But the fact of the matter is, I will never know until something actually works. The REs can make their case for trying another IVF on me and I can certainly make the case that I don't need more losses, more ectopics, ruptured tubes, and endless guesswork about the whys. Like any major decision, you have to look clearly at what you want and what you need. I WANT a baby. I NEED to do this in a safe and healthy way for me and the pregnancy. So now do I really need folic acid anymore?