Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Sunday, April 28, 2013

Anatomy of an Egg Donor Cycle

This is a post that has been kicking around in my head for months, and I am so glad that I can finally set it free. I want to thank everyone who has been incredibly supportive and kind in the past week and say that I have really enjoyed getting to know new bloggers through NIAW! I am slowly slogging through all of the "Join the Movement" posts (read them here) and am just amazed at all of the incredible voices out there. It makes me feel so special to be a part of this group of strong women (and men) battling infertility.

I'd like to take you through what a donor egg IVF (DE IVF) cycle looks like--at least what it looks like for me. Like all IVF cycles, there are variants in medications. Unlike all IVF cycles, there are differences in how you match up with a donor. Other clinics have databases where you make the decision, where you see photographs, where you get a lot of information. Other clinics have you work with an agency, which can often be very expensive. Costs for DE IVF vary just as costs for "regular" IVF vary--my IVF cycles have cost around $8600 plus medication, so with help on the meds front and occasional financial boosts no one IVF cycle has cost more than $10,000, and often it has cost less. Other clinics in other areas of the state and country can charge upwards of $20,000 for a "regular," "fresh" IVF cycle. Cost is relative, and we are lucky to live in an area where, while this treatment doesn't exactly fall into what normal people consider affordable, relatively speaking it is less expensive than many other places. The cost for a donor cycle is quite a bit more, but again, for us it is still less than $20,000 (although hovering around double our normal payout), when it can be $30k or more elsewhere. All of these variants can make your head spin, so I'm going to focus on what this process looks like for us, Bryce and Jess, in Rochester, NY.

Decision Time
First we had our consult appointment, in September 2012, following our devastating early pregnancy loss from our last frozen transfer. After being given our options, we pretty much felt it was a no-brainer to go with a change in plans rather than to keep beating our heads against the wall, searching for the mythical Golden Egg. It may still be lurking in the crusty recesses of my polycystic ovaries, but I just don't have the wherewithal to keep on the quest when it has caused us so much pain to gather the evidence that my eggs are probably not chromosomally normal. (Again, a bitter pill to swallow, because we are still in the "probably" camp, with no concrete evidence that this is definitely the case, but a lot of anecdotal evidence which is good enough for me. But still, that question mark exists. Grrr.) We wanted to take a break, have a Fertility-Free Holiday Season, and then start up in January. We were told a basic overview of what would happen, and then were mailed home some forms.

Step 1: Donor Forms
The forms that arrived in the mail were the most intimidating things ever. In order to eventually be matched with a donor, we had to provide information about ourselves and then what we would like to see in a donor. Which seemed interesting at first, until you realize that you are needing to prioritize what pieces to the genetic pie mean the most to you. Which opens a Pandora's Box of questions...what comes from the egg??? What is genetic, versus something you pass on through the environment of your home? Would I still have been a violinist if I was not genetically linked to my very musical parents, but had still been brought up in a highly musical home? (In my mind, the answer is yes.) If we had been able to use my eggs and had my genetics in the Punnett Square Soup, is there any guarantee that I would have a baby with curly hair? With dark hair? With dark blue eyes like mine? Whenever I visualized our FutureBaby during meditations or daydreams of a time when this is all a distant nightmare, the baby (sometimes boy, sometimes girl, usually two years old for some reason) had curly towheaded hair. Bryce was a towhead, and that's pretty dominant. My hair is naturally curly, but my mom's is not. My dad's is wavy, but my cousins run the gamut of straight, wavy, and curly. See how much time I spent just on hair? Now imagine filling out a form where you are deciding if eye color is important, hair color and texture, height, weight, skin tone, ethnic background, and then the very difficult short answer portion at the bottom that asks about personality factors. It was overwhelming. It felt weird. It felt like after mailing this in, I should receive an American Girl doll in the mail that looks just like me, but not really. It caused a lot of angst. It lived on the coffee table for months (because what was the rush, really, if we didn't have to make this decision until January or so?). I cried every time I tried to fill it out. We had conversations about what was important. Can you really concretely make a decision on what are the genetic traits that you would like someone else to give to your child? How the hell did I get to this point? It could have felt like picking out positives, like the wish book catalogs that JC Penney used to mail out before Christmas. But it felt a little more like "What am I willing to give up so that I can have a donor with proven fertility? What do I need to sacrifice?" The one thing that was non-negotiable was that the donor needed to have proven fertility, specifically previous cycles that resulted in babies.  I would give up just about anything for a chance at success. It was so hard, especially since we made the decision so quickly after our loss that I don't think I had fully mourned both the loss of my last fully genetic babyling AND the loss of any future fully genetic babylings. But, in January, the paperwork got mailed.

Step 2: Psychological Evaluation
Yup, we had to do a psychological evaluation. A two-and-a-half hour process involving 350+ questions that needed bubbling in of circles labeled "Always, Often, Sometimes, Never" and were things like, "I think of death daily," "My favorite hobbies are archery and stamp collecting," "I feel that my thoughts are being transmitted to the world," and "I am destined for something special." Which I thought was unfair, because thinking you're destined for something special in itself shouldn't be a red flag (I am destined to be an awesome mom! That's pretty special... but then again if I think I will be Queen of the Universe and rule everyone from my sky castle, well then that might be a problem). It was apparently patterns within the psychotically voluminous battery of questions that raised the flags. We could not take it seriously. I mean, we answered the questions seriously, but laughed a lot and tried to guess what psychological disorders each question was trying to ferret out. They only contact you if there's a problem, so thank goodness we weren't coded, but then that begged the question...are you not approved for parenthood if you have mental illness? That seemed not quite right either. After the battery of multiple choice, we then had what was basically a couples' therapy session where we outlined our family lives, previous relationships/marriages, our relationship, and then our story of trying to conceive. That was exhausting. Then we had to discuss the intricacies of DE IVF from an emotional standpoint, and whether we were prepared for failure. Cheery, no? I totally understand wanting couples to be ready emotionally and well-thought-out in their decision to proceed with third-party reproduction. They require this of the donors, so they began requiring it of the recipients as well. But I'll be honest--I kind of felt like I was undergoing an approval process--were we decent enough, well-adjusted enough people to be parents? NO ONE ELSE HAS TO DO THIS type of invasive exploration of all things you unless you are engaging in third-party reproduction or adoption. It seems the more you want a baby, the more difficult it is for you to accomplish that, then the more hoops you have to jump through to get to that final step. So not fair when no one asks the meth addicts if they're adjusted enough for parenthood, but Step Two it was.

Step Three: Mock Cycle
Before you can be matched with a donor, you need to do a mock cycle where all the special lining-thickening meds can be adjusted when the stakes aren't so high. Again, not all clinics do this but most do. I called in January with my first day of my cycle, and was shocked that it would be weeks before I went onto Lupron. That's right, my nemesis Lupron is again a part of this protocol. God I hate Lupron. I was on Lupron for a couple of weeks before starting estrogen patches in February to build up my lining and get my estrogen levels up. A donor cycle is like a frozen cycle--the goods aren't being made in your body but you have to be ready to receive. The drugs are different because you have to be able to have some flexibility since you are dependent on someone else's stimming. So, after Lupron shots every morning that make you crazy and menopausal, you start the dizzying process of the estrogen patches. They stick on your belly, but have to be numbered with a ballpoint pen because after the first couple days of "on a few days, off and put a new one on" it becomes a crazy "Who's On First" tracking of which patches come off when and sooner or later you have 6 or so patches on at once and your tummy looks like a bar code. It is so bizarre. The patches alone didn't work for me (again, good to know before I am getting ready to receive actual embryos), so I also had to take Estrace pills. Little, blue, oval pills. And not orally. I had to take a teensy little blue pill and shove it where the sun don't shine, which is exceedingly difficult since it is not meant for that type of administration. Tiny pills with no delivery device make you feel like you are going to lose the thing, and hurt your ego by making your lady parts seem unimaginably huge in comparison. And then there's the bizarre side effect... what goes in must come out, and I did mention these pills are blue, right? I'll just let you figure out what happens a day or two later. So disturbing. Anyway, you go in for an ultrasound to check your lining and if all looks good, you are cleared for matching!

Step Four: Matching
This is where that scary and emotionally conflicting doll order form comes into play. After a successful mock cycle, the doctors and the nurses in charge of the donor program look at what you have deemed most important, and look at their pool of donors, and make a decision on what profiles will be considered good matches. I guess typically you are presented with 1-2 profiles, and you either approve or deny them. If you deny, they look again and see what they can do and the process may take longer. In my case we put all our trust in our medical team, and were presented with one profile which we approved because it was perfect. A profile contains the most basic of basic information and NO photo--age, height, weight, eye color, hair color, skin tone, ethnic background, career choice if applicable, and interests (again, do interests come from an egg? Does a love of hiking come from the fact that my donor and I have this in common, or that we strap our darling baby into a carrier from the get-go and get deep into the woods on a regular basis?). The staff at our clinic know the donors pretty well, and attested that they are all fabulous people who are largely doing this philanthropically. Lest you think we are "buying" eggs from some strapped young lady paying for college, this is a terrible way to make money. This donor will be shooting herself up with all the lovely follicle-stimulating drugs I did (although less of them, since she is actually a normal fertile lady and won't need the complex cocktail I did), go through the pain of very sore ovaries and multiple internal vaginal ultrasounds with Mr. Wand, go through the surgery of egg retrieval, and need time off of work for both the surgical procedure/recovery and any bloodwork/ultrasound monitoring appointments. For all of that she will receive several thousand dollars. Not exactly a cash cow given the time commitment and pain of needle sticks and an aspiration needle going through your vaginal wall to retrieve those golden eggs. This also isn't an adoption of sorts. Eggs are an ingredient, not an entity. Any semblance of "parental rights" that could exist are relinquished, as those eggs are nothing until they are embryos and implant into my nourishing uterine environment. All of that said, at this point in the process we are matched and thrilled with the match. Due to the intricacies of getting two lady cycles on the same page and some preexisting travel plans on the part of our donor, we are looking at the summertime for the curtain to rise on the actual cycle. And so now...we wait. Which apparently we are expert at.

Step Five: Actual Cycle!!!
We aren't here yet, but one day in the late spring we will receive a call that our donor has received her period. Very strange that I log so many cell minutes on discussions regarding my period and/or someone else's period, but we have to be all synced up for this to work. Which is why I've been on the Pill for some time (always cracks me up that I need birth control to feasibly get to the point where I can actually GET pregnant). Then I will go on Lupron (and so will she), and then I will start the hoopla of the estrogen patches as she stims. Her job is to make fabulous follicles and my job is to make a plush home for the fertilized embryos to snuggle into. When she has her egg retrieval, Bryce will come in and make his contribution (always awkward), and I WILL BE THERE TOO. I will be a monkey's uncle if I am not in the same building when all the pieces are being put together to make those beautiful embryos. It is so weird that I don't even have to be in the same zip code for the embryos to be made. After the donor's eggs are fertilized with our sperm, they will call us a day later to let us know how many fertilized and made it to Day 1. And then the game looks pretty much like a "normal" cycle from there on out. They will decide if we will do a Day Three (8-celled) or Day Five (blastocyst) transfer. They will only transfer two of them--they won't do three like I've done on multiple occasions (with limited success and no multiples). This is because we are far more likely to end up with twins with two embryos than ever before, because these will be SuperEmbryos. I will welcome those sweet little ridiculously robust embabies to the Mother Ship. It will be back to the regular scenario--me in the stirrups, Bryce holding my hand, and both of us watching our potential future children come home to my uterus. Except now we will both also be thinking of that incredibly special person, that amazingly selfless woman who is giving us our best chance of finally actually experiencing the miracle of pregnancy. We will be excited as we've never been before, and so, so grateful that this whole shebang exists and that there are people out there willing to give us this very special gift. We will be more hopeful than ever that this process that takes longer than we thought and is more involved than we thought and more emotionally challenging than we thought will bring us more joy than we thought possible, and bring us that much closer to meeting FutureBaby.

Sunday, April 21, 2013

Join the Movement: Being A Proud Voice for Infertility



Happy National Infertility Awareness Week (NIAW)! It's hard to believe that another year has come and gone and it is time again to spread awareness and accurate information about the disease of infertility, its many effects on the people who live it with it, and the many treatments available. This year's blog theme is "Join the Movement" -- how you have contributed to the movement of infertility awareness and education in ways big or small.

I started this blog in September 2010 with a post titled "To Share or Not to Share". It explained my purpose in writing a blog about my infertility journey, which had just ventured into the exciting and terrifying world of IVF. I had experienced my first in vitro cycle and my first failure, and was floating in a sea of sadness and confusion. IVF was supposed to be my silver bullet and the first attempt that seemed so promising had resulted in two decent 3-day embryos, no frozens, and a big fat negative test. Despite the fact that I had had 24 or so follicles on my last ultrasound before the egg retrieval, the results were pretty dismal. I was involved in not one but two support groups, a fertility yoga class, and had been active on an online forum site. But I was feeling frustrated--outside of these groups very few people knew what I was going through. The people who did know found themselves getting quite the education from me on how lady parts and the miracle of conception works. But I felt disingenuous, because I was still holding all of this very close. I wanted to share my story with others and process it through writing a blog, and I wanted to let others know that they were not alone who may not have support groups at the ready (or who were involved with support groups but still feeling pretty alone). And so I decided to share my story, publicly. I write this blog completely and totally openly. It has been posted on my Facebook page from day one, and so it is the farthest thing from anonymous. Not everyone reads it, but it is somehow always shocking to me when I see how many reads there are within hours and days of putting a new post up. Not everyone thinks that I have made the right decision to be so open in my journey to motherhood, that it is "no one's business" and perhaps uncouth to share so much about doctor's appointments, the internal ultrasound process, what follicles on my ovaries look like, or information about what it really and truly feels like, physically and emotionally, to have a miscarriage. But I don't do this for them. I do it for me, but I also do it for the people who message me either privately or publicly. Many comments come privately via messenger or email, people I had no idea were struggling with infertility (secondary, recurrent miscarriage, unexplained, you name it) but who say that the blog has resonated with them. Or they have shared it with friends or family who are going through something similar because my honesty about the process and particularly the emotional journey of infertility really hits home and explains what they perhaps cannot. This makes me feel awesome, because while I am definitely not a fan of being a long-time fertility patient, I am thrilled that in some way I am able to educate people and give a voice to the experience of infertility and loss. This is how I have joined and embraced the movement, by educating people and sharing, even when difficult, especially when difficult, what it is like to suffer the disease of infertility.

Which is why I have felt very conflicted lately. I pride myself on honesty in this process. I share thoughts that can be ugly, "unladylike." I explain the pain of jealousy and feeling left behind, even within the infertility community. I explain my frustration in how TV, books, movies, and magazines portray infertility in unfair and completely biased and/or inaccurate ways. I try to be sensitive, but there are just so many ways that the world is a minefield of pain for those going through infertility, especially those who have been at it for some time with no real success and a sense of stagnancy while the rest of the world, even fellow infertility patients, get their happy ending. So, while I pride myself on honesty (no matter how painful), and on transparency in my journey so that it is clear just what all of this feels like and how difficult the choices are that people in my shoes have to make all the time, I have been dishonest lately. I have hedged around an important issue. And I feel like, 9 months after making this decision, that I am finally ready to go back to being utterly honest for the sake of giving a voice to infertility despite how scary it is for me (and for my husband) to be honest.

I am diagnosed with PCOS with ovarian dysfunction. I don't ovulate on my own. My husband is diagnosed with male factor infertility, so without IVF with ICSI (injecting individual hand-picked super sperm into an egg in order to give fertilization a shot due to poor motility, overall counts, and morphology) we would not get pregnant. But now, 3 years, 4 fresh and 2 frozen transfers into the world of IVF, it has become apparent that something else is wrong. I have a fabulous uterus, supposedly. The miracle of ICSI has made male factor not really so much of an issue anymore. But still I cannot get or stay pregnant. Sixteen embryos have journeyed into my uterus, and none stayed. One freakshow ectopic pregnancy (through IVF! Please explain this to me when they put the embryos INTO YOUR UTERUS... that embryo had wanderlust apparently), and one early and devastating miscarriage are all the positive results that I have to show for all of this hard work and expensive medical treatment. Now it makes sense, but from the beginning we had just enough improvements to lead us to believe that we still had a fighting chance, excellent odds even, of getting pregnant via IVF. After two miserable cycles that produced a ton of follicles and very few viable embryos (none to freeze), using PCOS protocols, we switched it up and tried a new protocol. An egg quality protocol. A protocol that a friend of mine used who has premature ovarian failure (POF). I was a little concerned, because I don't have POF. My FSH levels have been very good, indicating a fabulous ovarian reserve. Before my last fresh IVF cycle last spring, I had AmH levels tested (the new gold standard in determining how many eggs are in your basket), and I came out like a champion. So why is it that the new protocol, the one that resulted in a misplaced pregnancy and a short-lived pregnancy and a grand total between two cycles of 5 frozen embryos, was the best one yet but was also the one meant for women with poor egg quality? Something fishy was afoot. We have had beautiful, textbook-quality embryos. And we have had some funky looking embryos. I always thought about support group and the women who said "ugly embryos can make beautiful babies" -- that you can't always tell true quality from the appearance alone (go figure). An embryo can look beautiful but be chromosomally faulty, resulting in poor implantation rates and yes, early miscarriage. Uh-oh.

After our hideously depressing and devastating pregnancy loss last summer, we had to take stock. We had to figure out what was really going on, because at this point we were at a crossroads. We could not continue on with the status quo and expect some miracle to occur. It had not happened and, quite frankly, I was exhausted. We wanted to know--what were our options at this point, really? Because I WOULD LIKE TO BE PREGNANT AND GIVE BIRTH TO OUR BABY. This is my right as a human being, something that many people don't have to give a second thought to. I have a medical condition and I deserve the right to treat it how I see fit. I deserve the right to build my family using the choices that are available to me, based on my own stamina and financial capability and dreams that I hold. Dreams and hopes and a picture of a future that most people have and don't realize are so incredibly fragile.

Infertility is like a strip poker game that isn't any fun. You start off wearing all of your clothes, your hopes and dreams for having a family like so many can do with a carefully planned night of romance. Then you shed your overcoat with the fertility consultation, your first clomid cycle or IUI. You accept that you are going to need medical intervention in order to make this family happen. You accept that now instead of a sexy night in you will be exposing your lady parts to a variety of nurses and doctors and a scary-looking catheter will be delivering the sperm to your waiting cervix and supposedly ovulated egg. This takes time to accept, but in the desire to have a family it is worth it. If you are lucky (as I was) you have insurance coverage for IUI, and so it costs a hundred dollars or two after copays and prescription drugs and blood draws. If you are not lucky and do not have insurance, this portion of the journey costs hundreds of dollars per shot and starts the financial drain that makes future options harder. If you succeed here, you have a hard-won happy ending. But if you don't succeed, your choices dwindle. You need to take off another layer and accept that either you need to move to IVF (which is hard physically, emotionally challenging, and fiscally difficult), move to adoption (which is emotionally challenging, fiscally difficult, time-consuming, and not at all a "just"), or choose to be child-free (which is emotionally challenging and difficult in its own right). I chose IVF. I chose to shed more layers and accept that now conception would occur outside my body, that now I would be exposing my ladyparts to a vertible roomful of people while unconscious, and that we would have better odds but no guarantee of success (no option gives you a 100% guarantee of success, just ask anyone who has suffered a failed adoption). We would also need to put ourselves in a financial holding pattern. This is an option that not everyone can afford, because there is no comprehensive mandated health coverage for IVF. Which is a sin in itself because not only is IVF an amazing family-building medical treatment for a disease, it is a diagnostic tool that can tell you more explicitly about what exactly is happening during and after conception.

This brings us to now. Or rather, the decision that we made 9 months ago. After so many failed IVF attempts, we knew that we were throwing efforts and money at something that just wasn't working. That has been very, very hard to come to grips with. This leaves me standing in my bra and undies at the poker game, exposed and shivering, because now my choices have dwindled even further and I need to give more up. We were told that we could do PGD, Preimplantation Genetic Diagnosis (or PGS, screening, since we weren't looking to diagnose a known genetic issue), if we wanted to continue on the traditional IVF path. This would mean traveling to another clinic either in NYC or NJ that specializes in this technology where one of 8 cells in a 3-day embryo is biopsied and tested for chromosomal abnormalities, and only healthy embryos are transferred, resulting in a much higher implantation rate and a much lower miscarriage rate. This would cost tens of thousands of dollars, uproot us to another part of the state or a different state for at least two weeks, and had no guarantees of success. It was very likely that all this time our embryos weren't chromosomally normal and that was why our journey had been so long and hard and fruitless. We weighed this option carefully, because it was the last option that involved both of our genetics. It did not make sense. We could invest all of this money and time and I would have to likely take a leave of absence and we could end up with NOTHING. And then be so financially drained that we had no money left for other options. Our other option was to consider Donor Egg IVF. This has been in the back of my mind for some time, given the clues that our Great Whittling from follicles to embryos has shown and the fact that the only protocol that produced good (but not happy ending) results was an egg quality protocol. The majority of the health of the embryo comes from the egg. The egg is the cell to blame when things go awry, because eggs are old (even if you are not so much). Eggs are more likely to go bad, and everyone knows that women carry an expiration date. I have said multiple times on this blog that "I am very attached to my uterus, not so much to my eggs." I didn't really think that I would have to put my money where my mouth was on that statement.

And so the decision was made. This new option that I have hinted at and danced around, the one that gives us much better success rates and is a total game-changer, this choice that we have made is to move forward with IVF, but no longer with my eggs. Whew. I have been holding that in for a very long time. Why have I kept silent? Because, while people are increasingly open about infertility and IVF treatment, there is, relatively speaking, very little out there on donor egg. It is a big step. It is a hard step. And, maybe due to human beings' strong biological need to carry on the line, to continue bloodlines, to pass on genes, it is somehow shameful to admit that you will not be passing your exact genes along. People are open about IVF, open about adopting, and some wonderful celebrities have come out and said that they used IVF in order to conceive their children. Celebrities like Marcia Cross and Courtney Cox, to name a couple. Gestational carriers are enjoying more openness as well--it is perfectly acceptable to talk about having someone else carry your own genetic material. Look at Giuliana Rancic, Nicole Kidman, and Sarah Jessica Parker. All very open about gestational carrier as a third-party option. But no one, NO ONE talks about egg donation, even those "miracle pregnancies" at 48 and older, mysterious twins born to women who could possibly have an egg or two that is still viable but that's really suspect and incredibly unfair to perpetuate the myth that you can totally get pregnant, "naturally," as you are heading towards AARP. And when it comes to the infertility community, there are a lot of blogs out there that discuss egg donation IVF. But there are not a lot of them who are currently heading towards a cycle or struggling through the process. Maybe I have not been able to do a good enough search, but when I even go to sites that have specific "rooms" for donor gametes and all the blogs I find either are pregnant or have babies/children from DE cycles, and I go through five of them and can't find a fellow person at my place in the journey, I just can't bring myself to keep looking.

It is encouraging, don't get me wrong, that the majority of these blogs are happy endings. That is thrilling and so hopeful. But it is also incredibly lonely not to be able to find anyone on the journey. It is incredibly lonely to be in support groups and have very few people who are where you are because while egg donation is a wonderful option you usually don't just jump right into it. It takes time to get to this stage in medical treatment. I have written about how the longer you are at this, the harder it is to go to support groups and feel as supported as you are a support and source of knowledge to others, and so there aren't a whole lot of people left in support groups who are at this point in the journey. I felt that there was a hole in the voice for donor egg cycles. What it feels like to make this decision. What it feels like to struggle with nature vs nurture. What it feels like to come to terms with the sacrifice you must make to have a better chance at the glorious gain. What the REALITY of the process is versus the rare and not always accurate portrayal of this infertility treatment in the media. (For one, a recent article in Glamour magazine about a sister who gave donor eggs to her sister listed the average costs for egg donation near $40,000 or so, when my donor cycle will cost us less than a NYC fresh "regular" IVF cycle. Plus the article addressed known donor eggs, but not anonymous donor eggs through a clinic program, so it was like a gentle foray into the world of egg donor where it is still keeping the family bloodlines going, not the majority of egg donor experiences which are done with anonymous donors.) There are many ways to go through this process, but I have found that there aren't as many resources out there as I would like. I have felt horribly alone. I have felt like if I shared this I would be judged unmercifully (although that hasn't been the case with the people I have shared this with in person). I have felt my own feelings of being less-than because I cannot be the one to provide my half of the genetic variables, but then joy in knowing that I provide the solution. E + S + U = P, and I am the Uterus, I am the Pregnancy. I am the carrier. I am the one whose blood courses through the embryo, nourishing it and growing it and providing all of the environmental pieces that can give it the best chance to succeed and thrive and become our take-home baby. There is actually evidence that the biological mother's genetics influence the genetics of the embryo, no matter whose material created it in the first place. It's called epigenetics, and it is exciting. There is a limit of course--if my donor had dark skin and brown eyes my momma-blood-transfer is not going to turn that baby into a pasty-skinned blue-eyed person like me. But there is signficant data on the genetic contributions from the carrier, the biological mother. From me.

I will be writing more about the donor egg IVF experience in detail in posts to come. I can only explain this feeling as having been horribly emotionally constipated, unable to process all of the complex decisions and emotions and acceptance that comes with going down this fork in the path. But now (not to be gross) I am unblocked, I am regular, I am able to let these thoughts flow and finally write the posts that haunt me in my sleep. I can be honest again.

I'm not going to lie, this disclosure is scary on many levels. Once you share you can't unshare, and that has been my mantra since the decision was tossed about in August and then committed to in September (notice how much time this process takes--we took a break and didn't start pieces of the process until November, with the first medical pieces of the process occuring in January-February--this cycle is not going to take place until sometime this summer, so it has been a LONG HAUL). Once I put this out there, I can't take it back. But I trust you. I trust that the people who will disapprove have always disapproved of my choices to continue with IVF when I could have "just adopted." Instead of going on a rant about that, I direct you to a fabulous blogger's post on that subject, here. She hit the nail on the head in my opinion. (I respect and admire people who choose an adoption journey, but this is just not my choice at this moment in time. And that's more than ok.) I trust that you will not hold this against my beautiful future child, who I am so hopeful is even closer to his/her arrival into our lives. This is a sticky wicket, because while this is our story as parents fighting to have a child in our lives, the way that we would like to fight this fight, it is also our child's story. I can't help but feel that I am robbing my future child of privacy by sharing this part of our story to have a child. We will be open with our child about the amazing medical possibility that made him/her possible and the incredible love that we had for years before he/she was born that gave us the strength to keep fighting for the chance to have that moment in the hospital where he/she is placed in our arms. And the sharing of this journey will be worth any risks involved because maybe, just maybe, there are other people who are heading down the Donor Egg IVF path and are looking for a voice that mirrors their own, a voice that helps them feel less alone and less strange for having the complex feelings that go along with making this decision and the emotional issues that arise. A voice that says it's OK to feel this way. A voice that says that egg donation is not shocking, or shameful, or secretive. I am proud that we continue to fight the good fight, just with different weapons this time. I am proud of our choice. I am proud of the strength that we have. I am proud already of the FutureBaby who we will raise to be strong and independent and well-educated on the miracle of his/her conception. And I am proud of you, non-anonymous readers, who will take this as an opportunity to be educated on a not-often-publicized facet of infertility treatment and learn about the possibilities that I am so grateful exist.

This has been a difficult journey. It has been hard on me, and hard on my husband, but we are thriving and surviving. Bryce had a request--that I end with a message to our FutureBaby. He or she (or they) need a voice, too. So, FutureBaby, I hope that you will understand why I felt such a strong desire to make public your conception story. I hope that you will understand how much love we feel for you already, and how hard we have fought to make your existence possible. I hope that you will forgive me for sharing what is really your story as well before you had a say in the privacy of your beginnings. I did it for you, so that you can grow up in a world where all manners of family building are accepted and openly discussed and no one, NO ONE has to feel ashamed about where they came from or how they came into this world (or how they brought someone into their family). Donor Egg IVF needs more voices, and I needed to be one of those voices. I needed to fully and completely Join the Movement.

Read here for more information regarding RESOLVE and the disease that is infertility:

Basic Information on Infertility
Information on National Infertility Awareness Week, NIAW


 

Friday, April 5, 2013

My Phone, My Frenemy

As an infertility patient, my phone has become my worst enemy. And my best friend. And then back to my worst enemy. It's definitely my frenemy.

The phone tells you good news--when you can start treatment, what your estrogen levels are, when you need to make ultrasound appointments, what medication to change to get the best possible results.

And it gives bad news. Disappointing changes in scheduling, hormone levels that aren't up to snuff, negative pregnancy results, bad HCG reports.

But the worst thing that the phone does is stare at you, taunt you, torture you with waiting for it to ring.

These phone calls rarely come in the morning, but you know when to expect them. And so for me, the world kind of stops spinning until that stupid marimba ringtone goes off. I can't concentrate on anything else. I try to go about my business, but I can't, not really. The phone goes on a shelf in the bathroom when I shower or take care of other business. The phone is in the kitchen. The ringer is on high so I can't possibly miss it. I don't make other phone calls in case they call right when I am calling someone else and it goes straight to voicemail. Because I hate when it goes to voicemail. The nurse line at my clinic is very responsive, but if you miss that call there is nothing to do but call back and leave another message, then wait some more. I hate receiving news from voicemail. I need to speak to a person who can answer questions, no matter how simple those questions may be. I hate waiting and uncertainty. And so I stalk my phone.

As the day goes on when I am expecting a call and it hasn't arrived yet, all kinds of crazypants scenarios go through my head. They are waiting to call me until later because it's bad news and they're putting it off. They are pulling straws to see who has to be the one to share this bad news. They are strategizing just how to tell me another piece of bad news. Something has fallen through. Something is falling out. Something is horribly wrong. It's like an exponential form of when I talk to my husband and he says he's wrapping up at work and will be home in 10 minutes, and 45 minutes go by and he's not here. Instead of thinking something logical like he got a phone call or absorbed himself in solving a problem and lost track of time or was stopped in the hall by a chatty coworker, I immediately think he's dead on the side of the road in a flattened car. He's been mugged on his way to his car and is bleeding to death out of sight of anyone who can help, in between cars in the parking lot. Something along those horribly morbid lines, pretty much always dramatic and related to a horrible death or injury. Same thing when family members call at odd times. My mind goes "Who's dead?" instead of "how nice someone is calling me at an unexpected time." What the hell is wrong with me? It just spills over into the fertility phone calls.

Really, you can't blame me too much for catastrophizing those fertility calls. While Bryce has never actually called me to inform me that he is dead on the side of the road or being rushed to the hospital with a stab wound, I have gotten my share of shitty calls from the nurses. I know they don't love these calls. I know they feel badly for delivering horrible news (or just disappointing news). I know that they strive to find ways to deliver bad news in as sensitive a way as possible, and they don't enjoy listening to people like me either keening or sounding like they are dead inside on the other end of the phone. I keep hoping that soon the calls will be positive. All the calls. I will get beautiful HCG results and then each call after that will be to tell me how robustly they are doubling and tripling and then we'll have a call to schedule an ultrasound where something will actually be there and thriving. All the calls will be good and there won't be a single "I'm so sorry" in the mix. No one will tell me to stop my baby-sustaining medications ever again.

I can't wait for this glorious time to come and take away my fear of my phone, my inability to let it out of my sight, my pit-in-my-stomach feeling every time it rings when I am expecting a fertility call. You would think I'd be immune by now, that my phone anxiety would be less for just being so numbed to it. Nope. If anything, the nerves are made more raw by the history of bad news calls, I'm-sorry calls, prepare-to-have-your-heart-shredded calls.

Bring on the good news. Retrain me to expect something good. Make my phone into a friendly communication device again, instead of the harbinger of doom it seems to have become. I'm ready. Bring on the joy. Come on, phone, keep the smiles coming!