new books for a new year

I love to read, and have devoured books since I was a kid, but since starting law school, I really don't read "for fun" as much as I used to. After reading hundreds of dense pages every day for school, my eyes and my brain just can't take it and I end up spending more time watching TV than anything else when it is finally time to relax.

To remedy this situation while I'm on my holiday break from classes, I ordered books written by two of my favorite bloggers: Gretchen Rubin of the Happiness Project and Erin Rooney Doland from Unclutterer. I was going to buy them at our local Barnes & Noble a few days ago but they were too expensive (hardcover) so I ordered from Amazon instead - and they arrived in less than 24 hours! Both books deal with improving your life and are so appropriate for New Years Eve. I am saving The Happiness Project book for my "care package" for when I start my injections, in the hopes that having something happy to focus on will help me stay positive during everything.

I also watched the movie Julie & Julia yesterday, which is also about a blog (and also about food - I SO wanted to eat after watching it). For a long time, I have considered starting a more "fun" blog that I can share with my friends and family. Maybe this is all a sign that it is finally time to start?

Happy New Year!

how many medical personnel does it take...

Today we had our big orientation appointment at our clinic. We started by meeting with a nurse who went through what medications I'll be on, our calendar, and how to give myself the injections. Then we met with someone in the business office. Then we met with someone from the lab about donating our "unused genetic material." Then we met with some young doctor to review some other forms. Then another older doctor came in to go over the same forms. Then another younger doctor also shook our hand but I don't know why she was there. We had not met any of these people once during any previous visits so if nothing else I feel like there is a team of 20 people working on our "case."

One interesting thing we realized today was that even though we'd never met any of these people before, they all seemed to be on top of our details - they knew what our preferences were, when we'd be starting, etc. I asked how many PGD cases they typically do and apparently they only do about 10 per year. Maybe that is why we are more memorable?

My other theory is that we had an (apparently) unusual request regarding what sex embryo should be transferred in the event that we get two spectacular blasts. Basically, if we have two equally strong blasts - one male and one female, both without the MD gene - then we want the female transferred just in case the genetic test is wrong. That way in the 1% chance the test is wrong, we end up with a carrier and not a boy with MD. Didn't seem crazy to me but we learned today that it required approval from the ethical board at the clinic/hospital. Maybe that is why they remember us?

Although today was stressful, I am excited to get this show on the road. I'm currently on BCP and I'm guessing it will seem like no time at all before I'm injecting myself. Which, btw, I'm a little apprehensive about but I'm sure I'll get over. They're all sub-q except for the one-time hcg shot so hopefully it won't be too bad. And they even let my needle-phobic hubby off the hook! They told us if he's really stressed about giving me the shot, there is no problem with having my brother-in-law the doctor do it (or a nurse, or whatever).

I am now watching some hockey and trying to relax. I got tickets for Christmas for a game in mid-February - which happens to fall during what will likely be the dreaded two-week-wait following our (hopefully!) successful transfer. Fingers-crossed that we'll make it that far.

little white lie

My husband's cousin is getting married in January. Getting there would involve one four hour flight plus another flight on a small plane (or a five hour drive through mountains). I don't know exactly where we will be in our cycle by then but no matter what, I don't want to go through the stress of the traveling and putting up with 100 in-laws.....not to mention the $1000+ it would probably cost us to fly there and get a hotel.

Hubby has agreed it would be best for us to skip the wedding, even though the entire rest of his family will be there. I feel bad but not bad enough to want to deal with it. The extended family doesn't know about our IVF plans and neither of us want them to know either (they're an especially nosy and non-PC bunch). So now we need a lie. Preferably one that doesn't cause them to ask more questions. And I'm afraid if we blame money then everyone else will be like "geez, we found a way to get to the wedding." Wish I had some good ideas but I don't.

On a more positive note, I finally made it to yoga class again. It's been six months since I went to the gym (I quit during the summer when we were outside a lot but that quickly regressed into walking the dogs once a day when fall came around). It felt really good to go back, although some of my muscles are not too happy with me right now!

choosing optimism

After a phone call this morning with my clinic, it now looks like things will be pushed back a few weeks since I have not been on my BCP long enough. At first, just finding out we may have to wait two more weeks really got me upset. But then I realized that two weeks is nothing, even if it isn't the most ideal timing with other school and family commitments.

I am naturally a pretty pessimistic, sarcastic person so trying to choose the positive over the negative has been a bit hard. This morning though, I kept reminding myself how important it is that I don't get stressed out, cuddled with one of my dogs, and decided I'd rather have a baby in October anyhow. Hopefully as long as I keep my dogs around, I can continue to choose the high road (guessing they don't let rambunctious pseudo-puppies into the clinic, although they would *love* it). :)

ready to roll

We got the all-clear at our appointment today - woo hoo! Crazy how several weeks and several thousand dollars of tests can be summed up in about 30 seconds. We are really excited and made our "orientation appointment" at their next nearest opening, at the end of the month. Our doctor thinks we should be looking at a mid-to-late January transfer. Definitely good news and it keeps getting more real every day.

To celebrate, I decided that I was not even going to try to accomplish any studying for finals today. Who cares when you get the go-ahead to make a baby, right? ;) We went out for dinner at our favorite local place, did some online Christmas shopping, and made some cookies for the hubby (okay, I ate one too).

postponed - damn you blizzard!

We had to postpone our appointment today due to the fricking blizzard warning surrounding our clinic. I'm pretty disappointed that we won't hear all of our results until (hopefully) Thursday but all in all I'm glad we didn't risk our lives on the highway. It would be pretty hard to make a baby if we froze in the ditch somewhere.

Still in the middle of finals - can't wait to be done with this semester. I did, however, manage to wear sweatpants all day today, with the exception of the 20 minutes I wore jeans to take the dogs for a quick walk. I heard "Alone" by Heart on the radio today and now feel that I MUST get a karaoke fix sometime soon (especially if I won't be able to have a drink come January).

crazy

As a general rule, law school finals suck. They are not like undergrad finals at all, not even close. Historically, I have hated them as much as everyone else, especially the fall exams because they mess up Thanksgiving AND Christmas.

But today I realized there are some good things about finals: Wearing sweatpants all day, having an excuse for ignoring other obligations, making your own schedule, great reason to go get a massage, and great excuse for forgetting things. And this year, the best part about finals is that it is doing a great job of getting my mind off of a lot of the IVF-related stress. I simply don't have time to obsess over it - I have intestacy statutes and UCC code provisions to memorize! :) Maybe doing this during law school wasn't such a bad idea after all.

first sono-histo - yay?

I can honestly say that I was not at all prepared for how uncomfortable that ordeal was - and in some ways, the psychological/emotional discomfort was actually worse than the physical part.

an important part of this whole process that I was able to downplay until right now is that I have vulvodynia. Let's just say speculums are not my friend - downright painful. And when I say painful, I mean PAINFUL. Scorching, sharp pain. So back to today...

I didn't know they were doing a sono-histo today, and if I had, I would not have known what that meant. I've had two previous simple ultrasounds to count follicles so I (stupidly) assumed today would be more of the same. Slightly uncomfortable but totally do-able. So when the nurse explained that this would be a multi-step process, boy was I excited!

Anyhow, we won't get the full report until we go back next week but I'm going to assume everything looked fine since I didn't notice any weirdness on the part of the tech or the doctors. The tech didn't know initially that we were doing this for PGD purposes so was confused when everything looked "normal." I'm going to take it as a good sign that I naturally produced enough follies that she asked if I was on Clomid (we haven't started any drugs yet). I also assume if anything was majorly wrong they would tell me?

I really felt intensely today a kind of out-of-body sensation as three people poked and prodded at my insides. Like my body wasn't mine anymore, like a line was crossed today. "You thought your internal organs were private, huh? That you controlled them?" "Ha!" On the lighter side, The Husband (who sat with me through all the fun today) claims he kept thinking of "Turning Japanese" while he was sitting there. What a dork.

I, on the other hand, just kept telling myself "my child will not need a wheelchair." It really does help when I keep the big picture in mind.

practice

The blood sample made it to the clinic and they were able to get the tests they needed! I know this is a very tiny step in the process but I'm relieved regardless. Wednesday we go in for the "practice run" ultrasound where they will take a look at the follicles during this cycle and measure my uterus so they'll have a better idea of what they're doing when we do this for real.

Next week we'll go in again to review the blood test and ultrasound results - both will give us a better idea of what my drug cocktail is going to look like. Again with the scary + exciting. And the best part....this is the start of finals for me! Ugh. I know in the end the finals are meaningless but right now they are causing me some stress. It's hilarious to me how we're supposed to stay de-stressed during the whole IVF process - yeah right! I wonder if I can find room in our budget for weekly massages? :)

better

okay, so that last post was pretty spastic. i'm feeling lots better now after eating a meal, catching up on my blog reading, and taking a much-needed nap. as annoying as the last few days have been, i'm trying to keep perspective and remember how lucky i am that IVF is even an option for us. and in honor of thanksgiving, i am thankful that i can even have my period naturally and that at least we don't have to worry about that part of the process. :)

shipping

So I managed to get my blood drawn this morning and sent off to our clinic - but I am definitely worried that something in this process will go wrong. I was feeling pretty good about everything initially this morning but things kind of went downhill from there. The nurse who drew my blood seemed a bit dim and also used a ridiculously large needle to draw one tiny vial of blood. Then she said it would take 20 minutes for it to clot and be ready to send out, but she didn't actually bring me the box with the vial in it until an hour had gone by.

And then came the fun part - trying to ship something as quickly as possible back to our clinic on the day before Thanksgiving. Turns out UPS and FedEx don't deliver on Thanksgiving, no matter how much you're willing to pay them. We ended up shipping it via USPS Express Mail. The computer said it would arrive at my clinic sometime tomorrow...but then the clerk warned me that the Post Office won't guarantee anything so it's possible it wouldn't get there until Friday. Ugh. So I call my clinic:

Me: I might not be able to overnight the blood to you.
Receptionist: Oh, why?
Me: Tomorrow is Thanksgiving.
R: Oh.
Me: Do you know how long the ice pack will keep it cold?
R: As long as it stays cold, it will be fine.
Me: Yes, I know. But do you know how long that will be with the ice pack?
R: Let me ask a nurse. [puts me on hold for 5 minutes]
R: Okay, they said it should be fine as long as it stays cold.

So obviously I'm a bit worried about this. Also it cost me $50 to mail it via Express Mail. I am regretting my decision to come out here for Thanksgiving at all. I should have stayed home and just driven to the clinic to have the blood drawn there. Argh.

Oh and to top things off, my husband is annoyed with me because I'm not properly enjoying this "vacation" and he's "sick of having to come up with stories" for his extended family. He is really going to have a great time when I'm actually wacked out on hormones.

box arrived!

The box with the blood kit got here like it was supposed to, mom-in-law intercepted it before nosy aunt could see it - phew! I was really looking forward to explaining the large square box with "human specimen" on the outside. :)

logistics

I am supposed to be on vacation right now. And technically, I am in Myrtle Beach in a giant beach house with family (well, in-laws, haha). My final exams start in less than two weeks so I have been preparing myself to study while here...but I was not planning on having to deal with The IVF Project while we were out here. *sigh*

We are gearing up to get things going right away in the new year. So at our last appointment, our RE instructed me to wait for my next period, at which point I would need a blood work-up on Day 3 and an ultrasound/"test-run" between Days 5-12. And of course I get my period two hours before I board a plane to leave town for a week. Super. So, while waiting for my connecting flight in Atlanta, I had to (1) call my parents to get them to overnight the blood test kit to South Carolina and (2) find a clinic willing to draw my blood.

Now this wouldn't necessarily have to be stressful...but I do not (no, scratch that, DO NOT) want my husband's aunt, uncle, cousins, etc. to know that we are doing IVF or even thinking of getting pregnant. I don't mind telling my friends and people who are close to me, but the extended family in-laws are pretty much the last people I want to be in on everything. Also, they are pretty conservative and judgmental, and I have no idea whether they might judge us for this. Ugh. To clarify, *I* don't mind telling them to mind their own business but I'm pretty sure my husband would crack under pressure.

To top it all off, when I called my RE's office to schedule the ultrasound, I found out he will be out on vacation FOR THE ENTIRE MONTH OF DECEMBER. Seriously? The entire month? I really really (x100) don't want our whole schedule to get pushed back any further so this development really annoys me. We met with our RE for the first time back in August just to make sure we'd have enough time to get everything set in time for January. Anyhow, I talked them into letting me see one of the other doctors instead so we can still keep the ball rolling. As my mom always says, "it's always something."

the roll-out

I told two more of my friends this week about our plans. The three of us went for coffee after class and I decided it was a good a time as any to tell them. I didn't realize, however, that P would be the first guy I talked to about this (besides the immediate family members). We have been really good friends for over two years now so I don't think something like this is going to "ruin" anything but I could tell it was weird for him.

Although I've realized that for a lot of my friends, it isn't necessarily the IVF part that is shocking - it's the idea that I would even choose to become pregnant at this point in my life. When you're finishing up law school, so many people are hyper-conerned about their future careers that they're just as afraid of getting pregnant now as they were at 17.

It's funny, because this factor has really thrown a wrench in my ability to guess who is going to be a Super Friend (you know, the ones who randomly show up when you're having a hard time to drop off cookies or invite you to a movie) and who is going to fade out of my life a little bit because of all of this. I *know* at least one female friend who is struggling with the whole career/baby conundrum is going to stay away just because it will force her to deal with the conundrum directly.

I'm not necessarily upset about any of this - I know at least some of my friends will be there to help me through this - I just don't know which ones!

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I painted my nails purple this week because it reminds me not to take life too seriously. And I like purple. So there. :)

Veterans' Day

For awhile now, I have been meaning to write a post about my grandpa. He fought and earned a Purple Heart in WWII. Being a veteran was an important part of his identity so I think today would be a great day to write about him.

Specifically, I wanted to write about my grandpa's death. It's funny, but death is what solidified my decision to go forward with this whole IVF business to begin with. My grandma (on my dad's side, who I will write more about in a future post) died last March, and less than six months later, my grandpa (on my mom's side) passed away. Losing both of them, and the time I spent with my family right before and right after their deaths, made me so sure that I wanted to bring life into this world.

My grandpa had a stroke during the early morning on the last Saturday in July. At the time, I was in Wisconsin on a weekend "vacation" with E (my husband). For various reasons, I didn't find out about his stroke until later Saturday afternoon. My mom downplayed things and I assumed he would be fine. The next day, as we started on the 6.5 hour drive back home, my cousin called. And that's when it hit me - Grandpa hadn't just had a stroke, he was actively dying. So after the 6.5 hour drive, I got back in the car and drove 4 more hours to the hospital.

When I got there, Grandpa was still able to communicate (albeit with difficulty) and was fully aware of what had happened. He had a living will, he'd developed pneumonia, the stroke had left him disabled, and he'd decided he was ready to go. So we waited.

Tuesday evening ended up being one of the most amazing nights of my life. I'd meant to leave earlier that day, since it was feasible that he could hold on for weeks. But I couldn't do it. I couldn't say goodbye when I knew it might be the last time. So I stayed.

I spent most of the day sitting in his hospital room with other various family members. My cousins, who still had to go to work, would show up in the evenings. J, who works for FedEx, came straight from his shift in his uniform. He and I were sitting on either side of Grandpa's bed, the Twins game on the TV. At this point, Grandpa slept a lot of the time but had lucid moments in between.

A little while later, I told him that the Twins had hit a homerun. He then proceeded, with long pauses and somewhat labored speech, to talk about a house they had lived in back in Kansas City in the ‘60s. He then said something about my mom, and that was when my aunt explained that when they had lived at that house, there had a been a baseball field across the street, where my mom had played ball with the local boys (and apparently been pretty good).

He woke up for awhile, and said “you kids have been wonderful.” J and I looked at each other – it was the first time he’d started speaking in the past-tense like that. We told him that he had been a great grandpa, our voices seconds from cracking. He seemed to be having trouble breathing, so I asked him if he was comfortable. He said “very.”

I don’t remember exactly how things transpired from there, but soon after it was clear that Grandpa wanted to say goodbye to all of us. His tone was very final and sad, but also content. We each took turns telling him how much we loved him, and that it was okay to let go, that we would be okay and we would take care of Grandma. When my mom bent down to speak with him, he attempted to hug her (which he had not done at all the entire time he’d been hospitalized). He then looked right into my mom’s eyes for what seemed like five full minutes, their eyes full of tears.

So we took turns. Me, two of my cousins, my mom, my aunt, each of us telling him goodbye. My brother was not able to travel there, so I called him to see if there was anything he wanted me to tell Grandpa. “Just that I love him.” So, somehow, I got the words out, my voice cracking, and told Grandpa that I had just talked to my brother and he wanted him to know that he loved him. All Grandpa said was “I know.” It was so perfect, and so very sad.

Eventually someone summoned my grandma, who was at home resting after a very long couple of days. She spent a longtime by his bedside, and we all left the room for a little while so that they could say goodbye. Although their marriage had not been perfect (what marriage is?), they had been married for almost 60 years. She was as ready to let him go as she would ever be, relieved that he would soon be free of his physical discomfort and pain.

We waited by his bedside until he eventually fell asleep. We all felt like he might die that night, as he was clearly saying goodbye to us all. He ended up making it through the night, although his ability to communicate was very minimal the next day. The days passed, he slowly lost the ability to communicate, he slept longer, his breathing more shallow.

I left Wednesday morning, as I needed to return to my job. He was still alive on Friday and I again made the four hour drive. I arrived later that night. He had deteriorated significantly since Wednesday morning. It was hard to see him that way, as he was very much slowly dying before our eyes. He could not speak anymore, and his eyes had grown clouded. I could tell he was aware that I had arrived though, as he turned his head towards me. His eyes were open but I have no idea if he could see me at all. He could hear, so I told him I was there.

He died at about 3am the next morning. Another one of my cousins had spent the night on a rollaway next to him. He stirred before he passed, she woke up, and was holding his hand and talking to him when he died.
This entire time, he had not been alone for even a minute the entire week of his death.
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This whole experience made me realize how important family is to me, and how important it was to me to have known my grandpa. I think a lot of people, especially women, my age think they have “all the time in the world” to have babies and start a family. But you don’t. Nothing is a given.

For me, I knew what I wanted and it no longer made sense to put things off until it became more convenient. Because it would never be, and my parents would just get older, and I want them to be grandparents so badly. I used to think maybe I was crazy for wanting to have kids partially for my parents’ sake, to make them happy. Now I think it just means I truly am ready for this. I wish this was easier but it’s thoughts like this that make me realize it’s worth it.

i <3 our doctors

Today we had our phone appointment with the doctor at the genetics laboratory. It went as well as I think a phone appointment can possibly go. The doctor who runs the lab is one of the people who invented PGD 20 years ago. That alone is amazing and reassuring, but it turns out he is also a kind-hearted personable guy as well. :)

The main reason for the phone appointment was to create a connection with us and also to help reduce any stress we may have about the whole process. I was honest and told him that the PGD part doesn't scare me as much as the whole IVF process.

He had some good advice: (1) Stop worrying about it. Let the doctors worry about it. That's why you pay us and that's why you (should) be trusting us. Stay informed but once you learn what you need to learn, don't obsess about it. Stress is one of the biggest enemies to fertility and one of the few factors we can have an effect on. So relax. (2) Remember the big picture. When the time comes to start the process, don't let it run your life. Remember all the good things you already have in your life and focus on that. (Hopefully) a short time from now, you'll have a baby and those injections will seem like nothing. And finally some husband-specific advice, (3) When she starts the injections, be on your best behavior. And don't underestimate the power of bringing home flowers. (I liked this one!)

The last thing that I thought was really cool, was he asked us to send him a photo of us. I guess when we send them the samples after the embryos have been made, it takes about 18 HOURS to run the tests. This means the doctors work a lot of overtime. So they like to have a photo of each family posted in their lab - to give them motivation and to remind them how important their jobs are.

So yeah, a pretty important phone call. And since we are not doing our cycle until January, I am really going to work on the "stop worrying about it" advice. Starting now - I've got the season finale of Mad Men waiting for me on the DVR. :)

blab

The Husband is out of town tonight so I was on my own for dinner this evening. For some reason, eating alone on weekdays does not bother me one bit, but when it is a Friday night, it just seems wrong to be sitting home alone making yourself a peanut butter sandwich. So I texted my sister-in-law (who was my roommate before she became my sister, so is one of my best friends in the entire world) and ended up going out for dinner with her and my brother-in-law.

And by the end of the meal, I realized that when I am in the company of people who know about our upcoming IVF . . . I cannot NOT talk about it. I can't help it! I must walk around all day subconsciously wishing I had someone to talk to about this, because when I'm around someone who knows, I practically explode with thoughts and information. I've done it the last three times I've seen my mom. And now with my sister and brother-in-law. It makes sense, and I hope they understand, because I would hate to be annoying the most important people in my life.

Guess I need to tell more people or find some internet friends. But the "telling people" part is so tricky. I don't want the whole world to know and be "That Girl Doing IVF" when I walk down the hall at school. Argh. I guess at this rate I'll end up exploding and telling everyone eventually anyhow. *sigh*

blogs & calendars

I've had an awful time trying to find blogs of anyone doing IVF with PGD. many of the infertility blogs are great, but i just wish i could find someone else who is doing this for genetic purposes. i don't know why it matters to me, exactly, but it does. i guess it's just that for me the hardest part about this whole process so far is the loneliness.

they finally posted the schedule for spring classes!! I am really excited to finally be able to start planning but it's hard because I have no idea how the IVF process is going to affect my ability to function as a law student. my theory is that i'll try to spread my classes out over as many days as possible, so if for example, i can't handle it on a Tuesday, then I'll only miss one class (instead of three).

My biggest strategy right now is building relationships with as many classmates as possible, in the hopes that there will be at least one person in each class i take who will be willing to share notes and tape the lectures. the hardest part is knowing when the time is right to drop the "i'm a science experiment" bomb on my friends and professors.

closer

We finally had our second appointment at the clinic. I'm not sure if this is how most clinics do it, but doing IVF with PGD involves an entire team of people. We technically had appointments with our primary doctor at the infertility clinic (MD with reproductive endocrinology specialty) and our genetic counselor, though we also met briefly with the doctor who oversees the lab where the embryos are made and grown.

We are definitely getting closer to our end goal, though it is sometimes easy to lose sight of what that goal truly is. Like right now all I can think about is when we'll get to the point where we're actively trying to do a cycle of IVF. I am really excited about finally starting that part of the process, but also, honestly, really scared. There are so many unknowns that it can be maddening - how much will it cost? How will the hormone drugs affect me? Will I have enough eggs? Will we get enough embryos? Will enough of them be healthy (aka muscular dystrophy-free)?

We were able to discuss with our doctor our concerns about implanting more than one embryo. It's funny, because last time he said we would implant two, like that was a given. But then I told him I was concerned about that, and that based on my research I am a good candidate for a single embryo transfer. And he agreed. And that was it. So he went over the "embryo math" and that is now our plan.

Embryo math: If we were doing typical IVF, and implanting when embryos were two days old, we would have a 50% chance of getting pregnant if we implanted two embryos. BUT..... If we're doing PGD, that means we can't implant until at least day four in the life of the embryo, when it is in the "blastocyst stage." If we're into blastocyst stage, we have a 50% chance of getting pregnant with only one embryo being implanted.

So yeah, the odds seem pretty good that way. The big unknown there is whether we'll have enough disease-free embryos that live to Day Four. Soooooooo many things have to go right for this to work!! Again, maddening. Just gotta remember to be thankful that this technology exists, and that we have the resources to do it, and that we are doing the right thing. I am 27, our odds are overall pretty good, and IT WILL BE WORTH IT.

good news!

Voicemail this morning from someone at the genetics lab. I of course jumped to negative conclusions and called back immediately in panic that something, somehow, was wrong. Thankfully, it was the opposite - the PGD test is ready to go! They were just calling to let us know that whenever we go forward with our cycle, their lab has the individualized genetic test for us, ready to test our embryos.

I really wasn't expecting anything to go wrong with this step, but it is a step in the right direction regardless. Yay!

balance

Recently I have had a hard time finding balance dealing with this whole situation. I feel like I veer from one extreme to the other, either I am obsessing about IVF and pregnancy or I am completely pushing it aside, almost in denial about the whole thing.

My goal is to find balance. Of course this is an important part of my life, but I don't want it to BE my life. It seems like so many women, and so many couples, end up being defined by IVF/infertility/disease. I don't want that. But some days it is just so hard!

A big piece of this balancing puzzle is deciding who to tell and who to keep in the dark. So far the only people who know about our plans are our immediate family - parents and siblings, and a handful of friends from school. In a way, it is easier to talk about with my non-family members because there is less emotion involved. Some days I want to just let everyone know, to be straight with my friends, because it isn't something I'm ashamed of. But then I wonder if that will only make it harder. What if it doesn't work the first time? or ever? What if everyone thinks of me as That Girl Who is Doing IVF? or what if I just *think* that's what they're thinking about me?

The truth is, if I am going to get through next semester's classes, I need to tell a few more people. Because I'm going to need them.

lottery

The New York Times started running a series of stories called "21st Century Babies" this week. The first story dealt primarily with the problems that result from multiple births, even with twins, for both the mother and the babies. If the information cited in the article is even close to the truth, I already feel misled by every doctor I've talked to thus far.

I think the doctors, clinics, and often the patients seeking IVF lose sight of the big picture. There are numerous risks involved with twin pregnancies, including birth defects, low birth weights, premature labor, not to mention additional procedures, surgeries, and bed rest for the mother. The costs of these things are enormous - emotional, moral, physical, economical. If you've been trying to get pregnant, and keep failing, I can understand how maybe as you get older you will start to get more desperate to have a baby. Period. The cognitive dissonance kicks in and the only way you can make sense of what you've already gone through is to hold "Getting Pregnant" above all else. Including "Having a Healthy Baby." Unfortunately they are not necessarily one and the same.

For me, the whole purpose of doing IVF is to avoid passing on a disease to my future children. In other words, the goal is Healthy Baby. For all I know, the Getting Pregnant goal might not even be that hard for me to reach. Why on earth would I put myself through the entire IVF process just to trade in the risk of one disease (muscular dystrophy) for multiple increased risks of other medical problems (including cerebral palsy, lifelong learning disabilities, deafness, blindness, etc.)?

The good news is that I meet all the criteria for an ideal candidate for single embryo transfer (SET). I am under 35 (I turn 27 next week), I've not had failed IVF cycles, etc. I'm just pissed off that I had to learn this from www.nytimes.com instead of my doctor. No harm, no foul, at this point but still frustrating. I'm taking this as just another reminder that we are our best advocates. We can't rely on others to ask the questions, educate us about options, and keep our long-term best interests in mind.

Fix You

When you try your best, but you don't succeed

When you get what you want, but not what you need

When you feel so tired, but you can't sleep

Stuck in reverse

And the tears come streaming down your face

When you lose something you can't replace

When you love someone, but it goes to waste

Could it be worse?

Lights will guide you home

And ignite your bones

And I will try to fix you

And high up above or down below

When you're too in love to let it go

But if you never try you'll never know

Just what you're worth

Lights will guide you home

And ignite your bones

And I will try to fix you

Tears stream down your face

When you lose something you cannot replace

Tears stream down your face

And I

Tears stream down your face

I promise you I will learn from my mistakes

Tears stream down your face

And I

Lights will guide you home

And ignite your bones

And I will try to fix you

------

I have been a Coldplay fan for awhile but it wasn't until the last year that their music started to mean more to me. This song in particular I never paid attention to until recently (it's on their third album, X&Y).

Fall

It is finally fall! Typically my favorite season of the year, despite the fact that here in midwest it is especially fleeting. I've been feeling pretty tired lately and am hoping the crisp weather, beautiful trees, and transition from flip-flops to knee-high boots will perk me up (seriously, fall fashion is the best! The sweaters, layers, scarves, boots, hats but without the below-freezing temps).

I had lunch today with a friend who recently had a miscarriage and is facing possible fertility problems. So far she is the only person I've shared this information with who even comes close to understanding what I am going through. It felt so good to be completely honest with someone, especially regarding my fears about IVF, and know that she gets it. It's almost better that we are not connected more closely - there is just so much emotional baggage involved when discussing everything with family.

It is interesting that so far my closest allies in all of this are women facing infertility. I've yet to find someone who is under 30 and doing IVF for disease-prevention purposes. It's very strange to be playing the role of "woman dealing with infertility" despite the fact that we are not technically infertile. As our RE (reproductive endocrinologist) told us, we've always been careful enough with birth control that we don't actually know one way or the other. From his view, if the egg and the sperm have never had a chance to meet, he's in no way going to medically categorize us as "infertile." Can't wait to explain this to the insurance company - yay.

Note: I'm consciously trying to explain or at least spell out as many acronyms as I can. When I first dove into exploring infertility blogs, it was overwhelming how many acronyms were flying around: RE, IVF, PGD, ICSI, etc. --> Confusing!

That being said, I think for a lot of people going through this (women especially), memorizing and understanding all of those letters feels important. When everything else is out of your control, it's at least a tiny bit consoling to have power over all those letters.

buried

I've known I was a carrier since I was 12. So 14 years or so. I've known for so long, that I buried it so deeply that I forgot what it meant. So I was walking around thinking "no worries - you've had years to deal with this - you'll be fine by the time you want kids." But it hasn't been like that at all.

For most of my adult life, I desperately wanted to avoid having kids for other reasons - school, freedom, my career. Now I am ready to have kids, but not really any better prepared to deal with the whole carrier thing than people who just found out. But then, I feel so so lucky to have this knowledge before having a child with this disease. My mom is a carrier but didn't know until we were 8 and 10 (in other words, too late). I am realizing for the first time as I write this how different our perspectives are. I'm sure my mom, and lots of other parents of children with MD, wish they had the benefit of knowledge.

But that whole "it could be worse" way of thinking is cold comfort most of the time. It doesn't make it any easier to see my family, friends and colleagues having healthy children the "normal" way. And it doesn't change how alone I feel dealing with this most of the time. Putting yourself in someone else's shoes is a great intellectual exercise but it doesn't really change the emotional side of the equation.

science

The type of muscular dystrophy we are dealing with is x-linked. This means that if we have a boy (50% chance), there is then another 50% chance that he would have the "bad x." So overall, a 25% chance each time we conceive that the child will have muscular dystrophy. If you have a girl, if she gets the "bad x," instead of actually having muscular dystrophy, she will be a carrier. Essentially, since girls have two x's, the "good x" can cover for the "bad x." So, except in very limited (and much more complicated) circumstances, only boys have muscular dystrophy and girls just have to deal with being carriers.

There are options, roughly the following: No kids, adoption, donor eggs, sperm sorting (gives you a 90% chance of having a girl and thus avoid having the disease manifested), IVF with pre-implantation genetic diagnosis (PGD), or just go for it and pray/keep your fingers crossed.

We are going the IVF with PGD route (I'll let wikipedia fill you in on the details regarding this technology). When faced with the idea that you might not be able to have your own kids, it's hard to explain how desperate you feel, and how quickly you feel that way. Initially, I was so scared of the IVF process that I didn't consider it an option. It still scares me. A lot. But we're doing it anyway because that is what you do when you want something this badly.

short version

Girl's brother is diagnosed with a disease.

Girl finds out she is carrier of same disease.

Girl is so focused on brother actually having disease that she almost forgets what being a carrier will mean later on.

Boy finally meets girl.

They fall in love.

They get married.

They buy a house.

They get a dog.

They decide to go to grad school.

They get another dog.

They decide they want to have kids.

It gets really complicated, really fast.

something wrong

I have one brother.

The story is, my parents originally wanted three kids. They had me, two years later my brother came along. They changed their minds.

We joke that it is because my brother has a big head, that it was because my mom was on bed-rest for several weeks when she was pregnant with him, that it was because he was "mischievous" (a brat).

But deep down, I think it's because my parents felt like their family was complete already with just the four of us.

Up until elementary school, our lives were relatively normal and happy. When I watch the home videos from those days, I am always struck by how happy my parents seem. Not that they are particularly unhappy now, but you can tell they were at that place in life where everything is falling into place.

When my brother was seven, my parents started to worry. He walked funny. He always had, but we all blamed the diapers when he was younger and assumed he would grow out of it eventually. He didn't.

So they brought him to our local family doctor. He didn't have an answer. So we saw more doctors. Still no answer. So my brother had a muscle biopsy.

All I remember about the muscle biopsy is that it was supposed to hurt, and I think it did because I remember my brother crying. I remember us all being afraid. I remember him playing around in a wheelchair while we were waiting.

Strange, because what we learned from the biopsy was that my brother had muscular dystrophy. Not the worst kind, but a devastating diagnosis for an eight-year-old and his family. Now, my brother uses a wheelchair every single day.

My brother has Becker Muscular Dystrophy. It is not necessarily fatal, but can be. I'm sure I will explain it more in a later post but for now it is important to know that it is a progressive disease that affects your muscles. For most, it means you will eventually not be able to walk on your own and will need a wheelchair. It can also affect your heart.

This type of muscular dystrophy is passed on genetically. Most people are lucky enough to avoid it. Some of us are not.