Weary

Regardless of how much new information may give us insight and a new path to follow, it still sucks that we have yet another path to follow. I'm weary.

Regardless of how exciting it is that new options have opened up for us, it still sucks that we have been on this journey for so long. I'm weary.

Sometimes I just get overwhelmed with the heaviness of this all. I feel like I'm sitting on the outside of a glass window looking in on a very large room full of families and women who are pregnant and women who get pregnant even on their first IVF cycle... and I'm knocking on the glass, with big puppy dog eyes, hoping some one will see me and let me in or finally show me the door. But I'm weary of knocking. I've been here for a long time and I want to finally just be let in. Why won't they let me in?

An Article Moved Me to "Come Out"

I was sent this article from the Self Magazine by a friend who has followed our journey from afar through this blog from time to time. She read the article and she wanted to share it with me, like hey, when I read this, I thought of you guys.

In my head I was thinking, oh yeah, it's probably just another short, detailed-lacking article about some celebrity who went through many treatments and finally had success. Some article that just ever so slightly brushes over the struggle and cost that this journey can be but happily shows the successful picture of her new addition or additions to the family.

But after I read it, I felt energized and moved to action. The article was very detailed and talked way more in depth about the internal emotional struggle and in the insurance and science worlds. It moved me enough to make the decision to 'come out' to my friends on facebook and share my blog with everyone. I feel strongly that this cause should get more attention for the following reasons:

1. We need to come out to let others out there know that we're out here too! This is a very isolating struggle and we need to support each other.
2. We need to come out to let others in our lives know how to support us in this struggle since we really do need strength from all around us.
3. We need to come out to help the science get better. By getting involved in advocating for Infertility, hopefully we can push more and more studies to be done to answer these 'unexplained' cases of infertility, and help success rates increase.

So, for all of you who are just joining me and B on our journey to build our family, WELCOME! I hope you can learn from this struggle of ours by following us as we continue on this road. I don't want you to feel offended or that I am trying to make others feel badly by writing this. I just mostly want to share this perspective. Its not the right perspective. Its simply mine, in all of its jaded and battle-weary glory.

For those of you who have been along for the ride thus far, I so appreciate your wonderful comments and support and want you to know it has meant the world to us. 

I hope you all take a bit of time to read the article I linked to above, but if you don't, here's a few of the points in it that really struck me:

• Infertility IS a disabilty.
• Infertility can cause humiliation at spending tens of thousands of dollars with nothing to show for it.
• Once successful, people want to forget and often don't support others who are going through it.
• The insurance industry likens infertility treatments to cosmetic surgery - its a want, but not a need.
• Only 15 states mandate some form of coverage for treatments.
• An average IVF cycle cost around $12,400 out of pocket.
• Even with IVF covered by insurance, women still opt out of the treatment. Its just too stressful. Here's an example:  Last year, researchers at Harvard Medical School found 34% of patients under 40 yrs old WITH insurance for at least 3 IVF cycles dropped out after only 1 or 2 and 68% of patients older than 40 gave up before exhausting their coverage. 
• Isolation is a defense mechanism against overload. Its not a good thing, but its what infertility patients do to protect themselves. 
• There are the same rates of depression and anxiety in infertility patients as there are in cancer patients.
• There is a stigma to infertility that somehow you are less of a person. That stigma has to come completely off. Patients need to start shouting from the rooftops.

So here I am, shouting from the biggest rooftop I can climb to right now. Thank you facebook! (Even thought I bashed you a month ago ;-) )

Finally, Maybe an Answer...

... or at least a clue. I'm actually happy to say that I'm NOT NORMAL! (Well, you knew that already, right? but....)

(i put a ton of links w/ lots of info in this post... just in case you wanted to know more)

I talked with the nurse at the clinic I am consulting with in Peoria, IL yesterday and she explained my initial results. I will have a phone consult on Monday with the RE there and have more to say, but for now, here's what I know: 

I tested abnormally for 2 things:

1) I have high APAs (Antiphospholipid Antibodies). The theory is controversial in its effect on the implantation of an embryo into the uterus, but the hypothesis is that these elevated levels cause blood clotting of the placenta/uterine lining and thus hinders the embryo from nuzzling in, or, if it does, it doesn't last long because the clotting will eventually starve the blood supply and miscarriage will occur. 

Many fertility clinics do not believe in this relationship,  mostly because there has not been a large clinical study showing a conclusive relationship between high APAs and infertility.  Additionally, there are many women out there who are fertile and do test high for APAs. So, its definitely not a causal relationship, but maybe just a flag for other things that are awry. 

The clinic in Peoria, along with a few other renowned Reproductive Immunology clinics do believe  (warning: this link is lengthy with a TON of info on implantation failure) that high APAs should be treated for. They do this by having me take daily sub-cutaneous injections of levonox (heparin, a blood thinner) after egg retrieval in an IVF cycle. The injections continue until 8-ish weeks of pregnancy if I become pregnant.  

2) I also tested high for CD16/CD56 cells which are associated with Natural Killer cells (awesome name, huh??, oh and I told ya so!! ). The basic theory here is that my body responds inappropriately to certain events in the monthly hormone cycle causing an inhospitable environment for the embryo. There are a crap ton of articles on it, but they are pretty heavy on the science part, so I'll spare you the details. 

And again because the large clinical studies on this haven't been done yet, many REs do not treat for this. 

However, those who do treat for this overactivity in the immune system historically use IVIG (an immunosuppressant delivered intravenously). But because IVIG is a) a blood product and b) extremely expensive, other places have been using intralipid infusions instead.  It has been shown in-vitro (i.e. in a lab) that they suppress NK (natural killer) cells the same way that IVIG does.  Oh!! and I forgot to add, elevated or improperly functioning CD56 cells are associated with women who have or have had endometriosis.... hmmmmm..... another clue, right?

So, along w/ the heparin daily shots, I would have to go in 2x for these infusions. Once, about a week before egg retrieval and the second after a positive pregnancy test. 

That's a crap ton of info, huh? But it definitely jives with what I feel is going on in my body. If you recall, with each of my 3 embryo transfers (2 fresh, 1 frozen), I had a feverish, achey reaction about a week after transfer. I just KNOW deep down that this is where the issue lies and its so nice to finally have some sort of test to at least give some credence to my theory.

The next questions are... 1) Can we target any of that w/ chinese medecine, 2) Are the western treatments successful enough to warrant me paying for one more IVF cycle or 3) Should we just move right to a surrogate... So much to process, especially for a Saturday morning...

I Carry a Photo of Hope in my Wallet

Someone told me once that I would know when I am ready to 'move on' to adoption when I think about it and get excited.

By that definition, I have never been ready for adoption and I still am not. When I think about going through the process of adoption, I get nervous, sad, depressed and wary.

But when I've thought about the possibility of surrogacy for our biological child over the last few days, I 've been VERY excited. I can envision it. I can play out some events in my head and think what an amazing thing that would be! I get a big smile on my face and a good feeling of closure, of an end to this long fought battle and a finality to an arduous journey. I think I even feel that I could get to a point where I could be at peace about not being able to carry a child myself.

Isn't it amazing what a switch one's mind can make. I mean, up until about a week ago, we really never even gave surrogacy any thought. But for the last few days, its been consuming my thoughts. I feel like I just threw this out to the universe and said... ok... maybe this is our path... and it gave me a rush of excitement and positivity back. I think that means something, no?....

For the last seven years or so, I've carried a wallet sized photo of B around in my purse of when he was about five or six and I just die every time I look at it. Its so adorable. And ever since I saw that picture, I knew I wanted to have little B's running around my house. (He'd cringe at that thought... LOL!). Infertility has made me feel like I may never get that chance and looking at that picture makes me sad and longing for something that I feel like I have lost, even though I never had it. But surrogacy might just be that option that makes me feel hope again.

I'm definitely not ready to make any decisions today and we have a crap ton of research to do if we choose to go that route, but I'm more hopeful than I've been in a VERY long time that I might get a chance to see B's eyes or nose or mouth ... in our baby. And that just makes me jump for joy

2 Trains,1 Platform, only 2 Feet

You know when you have a choice to make, you could go one way or the other, and you can't make up your mind? I have felt that way for a long time about adoption. I feel like I have one foot on the adoption train, and the other foot, plus my whole body, clinging to the pole at the station which is representing IVF.

We do indeed have one solid foot on the adoption train..... We picked an adoption agency and put some money down for place on their 'pre'-waiting list. What does that mean you ask? It means that once we get to the top of the list, and we have our home study and couple profile complete, we are eligible to be the next couple into the pool of potential adoptive parents that birth families see.

Its exciting, but like I said, its a foot, and not the whole body/mind, yet. We can get a full refund. And that's what I'm holding on to right now.

My mind right now and the majority of my daily actions are focused on my blood test result and trying to figure out how we can afford another IVF cycle and if its worth trying, if the tests indicated any sort of diagnosis, and if the success rate for that diagnosis and my age and history is high enough at the new clinic we are considering.

But then today, another train pulled into the statin. Its on the other side of the platform, heading in the opposite direction as the adoption train. But in order to put my foot on that new train, I think I need to take it off the adoption train.... B and I actually discussed the idea today of finding a gestational carrier (GC), aka a womb to rent, instead of pursuing adoption. And we both kind of got excited about it. Way more in fact than the first time we talked about adoption.

And now my head is spinning in all different directions, and I'm not sure where to go next. I'm not sure where each train is heading and what the schedule is... when will it arrive at its destination? Which one should I take? Or should I even go? Maybe just stay put for a while in the IVF platform?

I guess, as B says wisely, "No need to make life decisions today." So I'll sit with 2 trains in the station for a bit longer and keep mulling it over, but knowing for the first time in a while that I feel like I have a 3rd option that brings me some more joy than the 2 that I currently face.

Celebration, Frustration & Relaxation

B and I splurged on an amazing dinner this past Thursday night. Its likely the best we've had ever in Madison. We were celebrating. 

Some of you may know that I'm an Actuary and in order to be an official Actuary, there is a series of nine exams that need to be passed. I recently found out that I passed my final exam. I did it! I'm officially a Fellow of the Casualty Actuarial Society (read Super Geek)!  These exams have been a very large part of our lives for the last 5 years. Over 300 hours of studying for each one. And I say ours, because B has been a fantastic supporter of me and helped to pick up the slack around the house during 'study season'. So as a reward, we went out and did it up right!  

My family has been very supportive as well, and they are all thrilled for me too, but the first thing out of my dad's mouth (after a congrats of course) when I called to tell him the good news was, "Maybe now that you are done, you can finally relax and get pregnant." And I politely laughed a bit and said something like, "Yeah, maybe..."  

But inside my head I was thinking, "SERIOUSLY? OH MY GOD! HAVE YOU NOT READ OR HEARD ANYTHING I'VE SENT OR SAID TO YOU IN THE PAST 3 YEARS. DO YOU NOT UNDERSTAND HOW I FEEL ABOUT THIS THIS STRUGGLE AND HOW IT HURTS TO HEAR THOSE WORDS. I've even sent you this very well written article twice,  Infertility Etiquette , and you still haven't read it or try to know why those words, specifically the word relax, are hurtful and insulting to me? "

I know he didn't mean it to hurt my feelings, but I just see this as another example of how some people can't really understand how intense this is and how best to support me through this. I love my dad, and we get along great most of the time, and I know that he thinks about B and I frequently and how life changing this has been for us, but that word 'relax' really pisses me off and I've tried really hard to express how much that specific word is crap.... If getting pregnant was as easy as relaxing.... I mean, it just makes me feel like he really really doesn't understand that this is a disease and this is NOT something that I have control over, no matter how much I fucking relax. 

I actually think this is somewhat of a common theme or misunderstanding of this disease among the 'fertiles' of the world.

So, not only was I irritated about the comment from my dad, but on our way out of dinner a very young, skinny somewhat downtrodden woman was walking outside of the YWCA with a 2 yr old in her hand and a baby almost ready to pop to of her belly as we got in the car after a thoroughly relaxing and enjoying dinner... And I asked myself, "Really? Really? ... Seriously?.. UGH!I don't understand that if there is a god out there, especially the one I was raised with in the Catholic church, that that god, who controls things and teaches lessons and puts the stars in the sky, if there really is that god, why the fuck is there suck inequity in the baby arena, huh?"


I don't mean to get into a religious debate here and I've long since made my peace with where I stand on religion, spirituality and its place in my life, but I see these obviously frutsrating snapshots of others lives and I think to myself, I just don't get it... I truly don't.


So instead of focusing too hard on the things I can't control, I reveled in the relaxing feeling of 2 glasses of wine, an amazing dinner, a kick ass chocolate dessert and I opened the sun roof as B drove us home. It was a beautiful evening and I asked him to drive me around our neighborhood through all of the beautifully old oak and maple trees that line the street and make the moonlight dance on the night sky while the stars twinkle through the bare spots. And I looked up through the roof and let the breeze float past my face and I thanked the world for giving me the fortune to go celebrate my achievement with B and be able to appreciate the perfect mid summer's evening in this way.


And now I try to hold onto that feeling and hope that someday I will hold my baby to my chest and show him/her that same wonder and awe at the beauty that we live in and think, "There... do you see? This is the sign that there truly is something magical in the world. We just have to know where to look for it."