All is Well - Hard Things to Think About

Ramble Warning. 

Depressing Statistics for Women with AMA Warning.
VERY Uncomfortable Discussion about Chromosomal Abnormality Warning

I wrote this over a week ago, but was afraid to post. It's been on my mind for awhile and still is. Since this is a blog about my experience and feelings during my journey, the honest thing to do was to post it. 

After a year of infertility treatments and tut-tuts about my age from a multitude of medical professionals, I've become a little more sensitive than usual regarding my age. To compound the problem, a years worth of infertility treatments (3 IVFs in 8 months!) and the stress that goes along with them has left it's physical and emotional mark in more ways than I care to mention. Now I am faced with the added realism of doctors constantly calling me 41 BEFORE my 41st birthday, because they have to consider the age of the embryos  when they are born. Why you ask? Because that is what counts for problems that may arise.

In the land of infertility, 41 is old and can cause a multitude of issues - age related things that most of us women with AMA didn't think of when we started down the dreaded infertility path. Besides decreasing our ability to get pregnant, our miscarriage rate increases, as does the chance that there will be a chromosomal abnormality. This last part is the current worry area we are visiting. Depending on where you look, our odds of having a baby with a chromosomal abnormality is somewhere between 1 in 13 and 1 in 15. (Note this is with fraternal twins, much different for singleton pregnancies.)

On the upside, the odds that both will have an chromosomal abnormality are about 1 and 900. 

If you've gotten this far and are totally against fetal reduction in all cases - then you should stop reading here. I will have total respect for your beliefs and how they pertain to you, but I ask the same consideration for me. All of us in the land of infertility go through our own personal hell, and we really don't need judgement heaped upon us for the litany of hard things we have to consider every step of the way.

Since I am of "advanced maternal age" AND we are having twins, we are considered a high risk pregnancy and our surrogate has to see a perinatologist. We visited the new OB/GYN a few weeks ago (who won't be our actual OB/GYN, but that is for another post) and had our first visit with our Perinatologist last week. Building up to that visit, both my husband and I researched the heck out of the tests we would need to consider.

The consultation did not go well.  

While I didn't think about it before, our Perinatologist must be a part of the same religious medical group as the OB/GYN practice (not uncommon here in the south). This essentially means he Was. Not. Happy. when we were trying to get information about options if the worst case scenario happened and one of the fetuses has a chromosomal abnormality (CA) that we feel we could not deal with. These can range from things that would result in a stillbirth to death after a few weeks of life to some that we feel the quality of life would be extremely poor. Termination is somber idea for us who have fought so hard for life. 

At the doctor's appointment when discussing the CA tests, I uttered a question about "termination" and the doctor stopped short and very ADAMANTLY told me they DO NOT do that there. (Even our OB/GYN didn't act like he did.) Based on his attitude after that, we all began to have a genuine concern that he was misleading us on several counts. Tests he up-sold recommended to us (instead of amniocentesis) that we later found out may not be recommended for twins or donor eggs (which in this case, my eggs would be considered the donor eggs.) This is especially odd since I'm sure twins takes up a large part of his practice. Additionally, based on information we knew, some of his numbers for risk were off. (Example of that is below.) Finally, he suggested dates for the amniocentesis that would not allow us to get the information back in time (for GA law) should it be one of the items that we would consider termination. 

When I asked him directly about risk percentage of CA for what he was recommending - cell-free fetal DNA that tests for 3 types of CA - versus and the difference of the additional CA items discovered with amniocentesis, he assured me that miscarriage through amniocentesis was greater. (We do not have confidence that he was honest here.) 

My hubby says this is confusing how I say it, so I'll try to clear it up.

---------------------------------------------------------------------------------------------------------

(Chance of any CA (for 1 baby) in my age bracket with twins = 6-8%) - (Chance of one of the 3 types of trisomy that his test is for - variable X) 

Is this > (Risk for miscarriage for doing an amniocentesis (.3-1%)?

or 
is 7%-X > 1%

So theoretically, if the cell-free fetal DNA tests only 4% of the CA's, that still leaves us with 2-4%  untested risk. In my mind, that is a higher risk than the .3-1%  from amnio. This isn't even including the other things amnio tests for that are non-CA. That 4% is probably pretty close estimate. 

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All of this is a major problem, but to get a new specialist would could cause us to run past the time period that were are so precariously balancing in at the moment.  

Don't get me wrong, this is not something either of us takes lightly. I shouldn't even have to justify it as everyone has their own limits - and yet I still feel an overwhelming need to do so. We have gone through so much and if we had to make a decision like this, it would be horrific. But that said, both my husband and I are on the same page on what we would and wouldn't do when faced with certain results for certain tests. And our SIL/surrogate agrees as well.

Not only do we have to consider what we could handle at the birth of a child (death being a major one), but also as we age. Both of us have had a lot of experience with people important in our lives that have some very severe issues - both young and old. Enough that we wonder what will happen when everyone is much older and unable to physically care for them. With our siblings (and us) all in an older age group, the option of family being able to step in probably would not be available to our babies. Unless I left the burden to my son, which I don't think is fair at all. 

A child born with a severe chromosomal abnormality can have devastating effects. More than likely one parent will have to not work, which can be a big blow in income. Add the costs of medical and 1000 other things normal people don't think about, and any savings could be wiped out in a very short time. It only money right? Yes and while that may be true, older parents entering their 70's and 80's may have zero money left over to care for their child when they no longer can (much less themselves). They are then faced with the VERY REAL probability of a mentally and physically disabled child that will be sent to a state run facility. Knowing the child will spend the rest of his/her life potentially living in hell is just not something we are prepared to risk. 

So while I absolutely despise that we have to think about things like this, I guess I feel it's important to share. Because I think it's important we all know these things before we jump in.* That may not change our minds, in fact I can almost guarantee in most cases it won't, but maybe if someone is on the fence about other decisions (such as donor eggs)** then the information will be important to them. We all get so caught up in the idea and worry of having a baby, that we forget some of the other, very real, life changing concerns.

In my mind, there is no right or wrong answer with these tough decisions. I place no judgement on those of us that don't even want to know about things like this. Nor do I judge those who decide things differently than we would. In the end, we are all left with our own decisions and we must choose what we can live with 1, 5, 40 years from now - not what matters to outsiders looking in.

Sigh. I told you this would be a rambling post. We had such a small chance of getting pregnant. Heck, our chance of miscarriage was higher than our chance of getting pregnant. If we can just make it past the amniocentesis, then I will be able to breathe. For a little while at least. 

*In our experience, which is A LOT of different medical professionals, we really did not get enough information about all of the risks for my age. Really the only one that was relayed to us was our lower chance of getting pregnant. I'm not sure if we would have made a different decisions, but I think medical professionals need to do a much better job of informing their patients about these risks. 

**Even this does not guarantee that all will be fine and dandy as many here in IF blog land can attest. 

News Article: Why Women's Eggs Don't Last

A human oocyte.FLICKR, ED UTHMAN

It's late and I'm tired, but I've been meaning to post about this since last week. My BFF sent it to me the same day we got our twins u/s report and I wasn't ready to share our news with him yet. Will have to have a talk with him at sometime to explain "timing" and how it relates to "appropriateness", but fortunately our u/s went well. Anyhow - since I wasn't in anguish over my old-ass eggs that day, I was able to read the article as it was intended.

The article is a very interesting read regarding how egg quality declines as women age. Too tired to go into my analysis of it so I will just give you the link outright. :-)

http://www.the-scientist.com//?articles.view/articleNo/34375/title/Why-Women-s-Eggs-Don-t-Last/

This really doesn't help me that much because of my age, but I do think it has great potential for others 10+ years from now, with a hope of pharmaceutical help to all ages of women. That would be freaking fantastic. 

Tomorrow is the Day: Random Thoughts the Day Before

Work has been wicked busy (and good), thus I haven't had a whole lot of time to perform my usual obsessiveness during this period. With the weekend here and time so close, it's starting to creep in. I flip between wanting to look at baby stuff and then quickly switching to something else.

Tomorrow night we are celebrating my son's birthday - 21. (Holy crap - when did that happen?!?) His actual birthday is not that day, but he already had plans on his birthday (free sporting event tickets with great seats!) and I had a choose a different night. It didn't occur to me that I was choosing the night that could be either a very sad or very happy one for us. I'd hate to steal his thunder or put a damper on such an eventful birthday. Though now that I think about it, he would be thrilled at the good news. When I mentioned my poor date choice to my husband he became slightly surly and thought I was already thinking negatively; I quickly assured him I was not. 

Add dinner to tomorrows schedule of things, and then I saw that friends need help sewing costumes with a recital they are having next week. I was supposed to be in it, but I bowed out of the recital once I realized that it would be too hard with to do with the IVF cycle. Still, I had to explain that I probably couldn't help with the sewing aspects tomorrow either. I hate that, but it is what it is. Almost no one in that group is aware of our infertility problem and I can't imagine getting the phone call in the middle of all of that. Not to mention I'm sure my husband wants us to be together for that moment. 

By far this has been our best cycle and some part of me wonders if we had had the opportunity to do it here earlier (instead of India), if the results wouldn't have turned out better for the other cycles. We will never know for sure, but I suspect it may have. The cyst probably killed my first cycle and we would have waited if we weren't already in India. After the second cycle we found out that BCP lowers chances in women my age, something that is hard to avoid when you have to fly across the world and time everything. Actually, had I known that prior, I probably would have just flown out earlier and not taken any. Maybe. I'm not sure if we could have been that flexible with my husband's schedule. Who really knows except that this last cycle, which should have been the worst, was my best. By far. 

Sad to think that this is our last cycle with my eggs. Not to be Debbie-downer (I am hopeful), but if it doesn't work then we are in limbo for awhile. We will go to egg donation, but who knows when we will be able to do that or the logistics of it. While I won't feel a disconnect from any future baby we have that isn't biologically tied to me, I will feel a disconnect from my husband and his family. I don't know exactly how to explain that statement and any attempt to try would probably muddle it up even more. 

Plus , I so genuinely want to see what a mix of our genes would produce. Like most couples, I think we will/would make beautiful babies that will/would go on to do great and wonderful things. I would miss seeing the flicker of mischievousness from my Grandfather,  the possibility of light blue eyes (that have never changed due to any marriage mix), and the beauty and intelligence that I could point out from so many that came before me. Children are wonderful no matter where they come from, but there is something longing in me that wants the physical reminder of my loved ones that have passed to carry on in our future child. 

Sad to think it's our last cycle and a relief. Cycling is harder than I imagined and you have to put so many restrictions on yourself. So grateful to be able to resume wine, regular caffeine  and long hot baths. To not take a daily dose of supplements that make me rage/cry/get acne/grow more facial hair/etc.. Grateful not to have to pump more hormones and all the fun things that go with that. To not have to worry about gaining more weight; wondering if I need to buy a new wardrobe or just put my body on hold for yet a few more months. This week I was finally able to make appointments to get a cavity filled (anesthesia) and see my dermatologist (where most things Rx'd are no-nos for IVFers).  

My eggs are literally all in one basket. It can go either way. We transferred many embryos, but not more than the embryologist felt comfortable with. On one hand that makes me excited because it gives us a higher chance, on the other hand it makes sad thinking that our chances are so low to begin with that it's ok.  

Deep breath. 

Off to take a bath and think happy thoughts. If happy thoughts don't come, there's always my fallback: Grey's Anatomy. That sh#t's addictive and engrossing. Have lots to keep me busy today, so I need to get off the computer and try and dive into that. Tomorrow is the day and hopefully we will have great news. 

Mad Dash to the Finish Line

I don't know who Mr. Pipo is, but this image rocks.
You can get it here: http://commons.wikimedia.org/wiki/File:Mr_pipo_clock.svg

Yea, yea, yea. The ole "I've been a blogger slacker" post. The "I've been too busy" post. The "Too emotional with all that's going on in the world" post. Whatevs. Get to it.

We are on full throttle for surrogacy to start next cycle - which means hopefully the end of this month. (Crap - no drinking on NYE!) I've been a mess trying to get everything done in time, but we really wanted to pay as much as we can this year for tax purposes. Since I didn't work for 8 months this year, much more is applied. 

Plus, let's be real, every month for me counts now. My AMH is like .7 and my FSH is 12.7. Not good. Not horrible, but not good. This will be the last shot with my eggs - period. If this doesn't work I'll crawl into a hole until we are able to consider the donor egg option. 

I have to say that having my first 2 surro cycles in India did not prepare me for the complicated mess I would  have to endure here in the US. In India we just had to show up and they directed us for everything else. Here we are on are own and have to stay on top of things like a frenzied squirrel. Crimmy, I'm even going to have to give myself shots. With my ADD, this is not encouraging. 

Some of the things I've been juggling: 

• Coordinating 4 individual schedules with tight deadlines on when specific things have to be done. Guess who's schedule always gets the shaft (to be expected.)
• Countless phone conversations occurring middle of the day, for a length of time, that has me leaving my trusty cubicle to go hide talk in a conference room. Lest my cube mates get to hear me go on-and-on about the FDA required STD tests I have to take. "Yes, I need you to add Chlamydia  Gonorreia  HIV, Hepatitis  PPD, ... to my blood order. Oh I'm sorry, you want me to repeat that LOUDER for the 3rd time? Ok."
• Working with 3 different pharmacies to find out which can give me the best price, without sacrificing reliability/comfort level of getting all the right things at the right times. All of this again on the phone during business hours. All pharmacies have been given the Rx by doctor and are ready to ship ship ship. "Yes, I'm confirming the order. OH WAIT, you are with whom?"
• Phone interviewing lawyers with experience in surrogacy to see who can meet our tight deadline (are you sensing several themes yet?) 
• Going BACK AND FORTH with my new primary care physician office to try and convince them to add STD blood tests to my blood order for my physical. This way there is a chance insurance will cover it, but I had to go back and forth with them for about 2 weeks. Otherwise it's a couple grand out of pocket.
• Getting a physical so that additional items will be covered under insurance that wouldn't under my RE.
• Multiple doctor visits. Blood drawn yesterday AND today because I had to use 2 different labs. Trying to juggle all these without raising a flag (hopefully) at my new job has been an incredible feat. I'm a contract employee and want to go perm when my contract is up in April. 
• Psych evals - and while I appreciate the "concern" over my emotions, it really was a total waste of time/money for my husband and I. Everything that was discussed in the group session we had already discussed with them privately. I totally "get" why you would want to have one with the surro and the surro spouse, and even a group one, but I don't think every IP couple needs to have this done. Especially if you've been through the process before (even in another country). Thankfully the doctor put the ones for hubby and I as a "family counseling" code - hoping insurance will at least cover that. 
• Trying to get surros insurance documentation to make sure there is no surrogacy exclusion. Not their fault, but company's fault it is taking so long. 

There is more I am sure, but between balancing that and everything else in my life, my brain is kinda fried at the moment. I still have Christmas shopping to complete. Hell, I haven't even gotten all my cards out yet. 

On a Happy Happy note. Insurance covered a HUGE portion of my fertility medications. The pharmacy (Village Fertility) checked on a whim for insurance coverage (even though I told them it wouldn't be covered) and apparently a big chunk was. Had to pay just a little over 1K out of pocket - which is awesome since it was looking to be about 6.5K. She explained that even though we have BCBS for medical (THE SUCK for infertility treatments), the pharmacy is different and is quite good. Covered under Medco, formerly Express Scripts. I guess the lesson is: always check to see if insurance will pay. Even when you are sure they won't. 

On an unhappy note - I had no idea that the attorney was going to be so much. 2500 for the surro agreement (REQUIRED) and then another 4K if we make it to the second/third trimester. They have to go to court and petition that our names are put on the birth certificate. Otherwise we would have to adopt our own child. GAH! Oh well, I guess we should totally HOPE/PRAY/RAIN DANCE that we are so fortunate as to get to shell out the money in the future. That would be a good thing - right?

That's it for now. And to prove how busy I am at the moment, I'm going to publish this after only "checking" it once for mistakes. That's HUGE for me. Normally I read it and change it 10x. THAT'S HOW BUSY I AM. Or crazy. You choose. 

On Feeling Alone

I know that there are TONS of folks that face infertility, but damn it, sometimes this path feels so lonely.

• The hormones.
• The feeling less of a woman.
• The weight gain and the realization none of your clothes fit. 
• The money. (You can't even think of buying new clothes).
• The daily meds or supplements.
• The feeling of failure.
• The limitations of what you can eat/drink/do to make sure you have "the best chances".
• The no baby. 
• The doctor visits
• The pretending everything is fine.
• The pretending like you really want to hear and be invited to every baby event.
• People asking "so when are you guys going to have kids?"
• The CONSTANT reminder that you are old (or at least your eggs are). 
• The roller coaster that just won't seem to stop no matter how long you've been on the ride. 
• The worry that wanting to use your own eggs raises the chance of health issues in your child. 
• The worry that I'm becoming obsessive or annoying.
• Worrying about my in-laws
• The invasive procedures
• The worrying over every little unknown pain will cause a problem
• The money (yes, this is big enough to write twice).
• etc...

My BFF is a guy and I don't think he can completely relate. Actually, I take that back. His situation is worse.
Me: "This sucks. I can't carry a baby. My eggs are getting old. And we pay a fortune just to be on this stupid roller coaster ride."
BFF: "I think my MS, being single, no chance of kids, and the eventually that my walker requirement will turn into a wheelchair requirement triumphs. My insurance alone is over $900 a month and I can't work."
Me: "touche. Let's go grab lunch. It's on me."

My second BFF just had a baby, so it's not like I want to rain on her parade or have her feel like she's walking on eggshells. She's so totally awesome and her baby is as cute as cute can be.

My husband, though tremendously patient with me, doesn't alway understand how this physically and emotionally this affects me. And as many of you know, it's a doozy  Nor do I, having been a parent before and not from a culture who puts the highest importance on having children, understand all of his internal turmoil. On dealing with the emotional side of IF, we probably both stuff it down in order to appear brave for the other.

If I tried to discuss things with my mother, then she would be incredibly sad worrying about me. That would only add to my stress. No thanks.

In blog land I sometimes worry that I am offending others. In my posts and sometimes my comments; both farthest from what I am actually trying to do. Just trying to convey my thoughts at a particular moment in time. Or trying to avoid feeling sad. Or trying to be helpful. Or funny.

In work and with friends, I'm limited to what I can say. Sometimes because I'm trying to protect myself (lest I am fired for going through IF like I alluded to here) and sometimes I just don't want everyone knowing my business. Nor do I have the desire to be the discussion of gossip as can happen when you have a large group of friends. Nor do I want to be the person that constantly complains and whines as that drives me crazy. Little bits are fine, but when you run into that person who has had problems for soooooo long, it becomes exhausting to talk to them. I certainly don't want to be "that" person.

Yet life goes on. Everyone is busy discussing their kids, sharing fun photos, and doing fun family projects. I'm sure it's a grass-is-greener type thing (after all, we've had some AMAZING travel adventures over the last 4 years), but if I see one more Luvs commercial on Hulu, I'm going to scream.

Decisions, decisions

While we already know we want to cycle again as possible, it is very hard deciding where. There are so many pros and cons to the different locations - have to decide quickly. Due to my age and low previous response, it is imperative that I choose someone that has a high success rate for MY given situation. That's harder to determine (outside of US) than one would think. 

Things you should not read during 2WW (I mean it!)

From  http://www.fertilitynation.com

Ugh.

Supposed to get the news tomorrow, but I wouldn't be surprised if we don't hear from them till the 11th.

Looks like I need to pull out a yoga video and read my new "Mindfulness" book. 

I'm going to be how old? GAH!

Art by Ken Keirns.
http://fab.com/inspiration/aging-gracefully-16x22

It hit me yesterday. Wasn't fair. Truly I was minding my own business having a fun shopping day in my old hangout Little 5 Points (I can not BEGIN to tell you how cool we were hanging out there back in the day) when I had the sincere misfortune of catching a quick glimpse of my own reflection.

It wasn't pretty.

Apparently the boho look I was sporting (and do on occasion since my youth), does not actually look that good when surrounded by actual, modern, young bohemians (on 4/20 no less.) 

My initial reaction was "Holy crap - somebody get that girl some botox stat!" Oh wait, I'm fairly certain that botox would fall under the "what the hell were you thinking" category. Especially if I'm trying to limit stuff like caffeine, medicine, alcohol, and oh, I don't know, toxins that may cause botulism. Damn it. Ok fine. Just DON'T MAKE ANY EXPRESSIONS AGAIN EVER. And get more than 5 hours sleep. And DO SOMETHING with your hair for God's sake. 

Then another marvelous thought occurred to me: I'm turning 40 next week. Holy Christ in a Winnebago - when the hell did that happen? Can I protest or something? Occupy 30's anyone? My 30's have been some of my best years, but now that it dawns on me, the impeding 40's seem scary. 

I don't look 40; usually I gleefully tell people my age because of the confused looks I get. I don't feel 40; well maybe I do feel a tinsy-bit 40, but I've felt that way since I was 20. I definitely don't WANT to be 40. How is it I am already referring to myself as 40??? I have an entire 5 days left!

Most importantly, 40 is the age that egg stats really start to trail off (or at least that's how it is in my mind.) I've been able to deal with my new worry over the last few months about how my eggs will be - technically had not hit the big 4-0 mark - but now what? Crap, if I had known about this whole  older eggs thing, we would have started right away. But noooooo, I wanted to enjoy the whole "romantic, we've just been married" thing. They should give PSA's on this stuff: "girls, either freeze your eggs by 35 or screw a bunch of feminist things that take longer than 30 seconds to rant about. Fo realze". Then flash this chart the remaining 25 seconds.

If we don't succeed the first time, which statistically is expected, then our chances really decrease. Essentially I will need to put myself through as many IVF cycles as possible, in as short of period as possible. The stats for a 41 year old are downright "OMFG". Don't even get me started about 42. How will we even begin to afford this? If we can't use my eggs, then things get really complicated for us.

Is turning 40 going to be my new obsession? I'm not 30 anymore, and need to take better care of myself. Don't get me wrong, it's not like I think I'm 20 still and party like a rock star, but there are improvements I can make. I've started most of them with my "let's get this egg party started!" of late; hopefully they will become easier with habit. Hope so.

40. Ugh. It's going to be a long week. I wasn't even thinking about it until I saw my stupid, tired-looking reflection. Mental note 1: get plenty of sleep. Mental note 2: slap any one that says "age is just a number" on your birthday.