ChezPerky

Waffling continues. Or Continued. Decision made.

Yesterday I was 99% certain I would not do the clinical trial. My reasoning was simple: I knew that the likelihood was that in 6 months I'd probably get to the point where I couldn't take it anymore and I would drop out of the study. That's my right to do and they can't stop me. But it would be unethical of me to enter into the clinical trial KNOWING that the likelihood was that I wouldn't uphold my promise not to try to get pregnant for 12 months. To me, that would be like stealing. It's a $20,000 device that they're planning to implant in my heart at no charge to me. If I knew I'd end up voiding my ability to count in their data, I'd be stealing. So I was completely certain that I would get to the end of the headache diary month and tell them "sorry, but no."

And then I got a call from the study coordinator wanting to tentatively schedule a surgery date so that if/when I qualify it's already on the books. And what did I do? I scheduled a tentative surgery date. And I felt good about it. I knew I wanted to do the study. Maybe this was my sign that I should just do it and deal with the consequences later. After all, how often will an opportunity like this come about? And I really do want to do the study. It's a dream come true! I've been waiting for this study for years!

So I was right back to where I started. Not sure what to do. Continuing to waffle. I figured I'd just have to flip a coin at some point. But the proverbial coin has been flipped for me. Insurance coverage is rearing its ugly head.

I started a new job in May and when I changed jobs, I changed to a company based in Virginia. Virginia, unlike Maryland, has no mandated fertility coverage for insurance plans. And I had extremely good coverage under my old plan (and, in fact, if I hadn't gotten a 40% raise to change jobs, I might have just stayed at my old job for that very reason… I loved my old job!). Anyway, for that reason, I've been paying out of pocket for COBRA so that I can keep my old coverage. Problem is, of course, that COBRA is: 1) extremely expensive; and 2) limited time availability. A year from now, I will have to switch to my husband's insurance coverage. I asked him to look into fertility benefits and so I could figure out how that affected my outlook in a year if I choose to do the study. The results are in.

My husband's coverage, while not quite as robust as my current coverage, is quite good. He works for a major hospital in a major city, so this isn't shocking. However, I would have to go to the hospital system's fertility center in Baltimore, which isn't feasible. It isn't practically feasible, and it isn't financially feasible. And I'd probably have to change jobs to be able to be close enough to make it happen. More importantly, they haven't been around very long and their stats are terrible. Well, not so terrible, considering how few procedures they've done, but the point is, they're not as good as Shady Hell.

And that, my friends, is game, set, match. I am inflexible on this point. Since I won't have what I consider to be optimal insurance coverage for fertility treatment a year from now, the migraine study is no longer feasible. I don't love it, but I'm happy that the decision has been made on logical/practical grounds instead of the emotional grounds I was wrestling with.

Therefore, tomorrow I will stop being such a chicken and I will have my blood drawn to see if my hCG level has bottomed out. If it has, the clock starts ticking and in four weeks, I'll start Provera, and then I will start my next IUI cycle. If it doesn't work, I'm telling my doctor that we will switch to IVF. If she doesn't agree, I will change clinics. I'm tired of waiting. I now need to be agressive. And I feel really good not having these conflicting goals anymore. Now that I know which goal I'm aiming for, I'm good. And so, I am relieved.

Ever since I've heard about this migraine study (yes, I'm still obsessing), I've found myself much more sad about infertility-related things. I think I did a pretty good job of not wallowing in my infertility before (not that there's anything wrong with wallowing!). Yes, infertility is a part of my life, but so long as I was doing something about it, I didn't feel constantly sad about it. It just was.

Now, every time I think about the migraine study (all the time), I feel like I'm going to cry. Sometimes I do. And I'm not crying about the study… my gosh, it's a dream come true! But I think about 12 months off of fertility treatment and I just want to cry. It's just not fair that there's no possibility I'll have an "oops" during that time. If I got pregnant during the study, I couldn't pretend like it wasn't intentional. How can I promise I won't get pregnant for another 12 months? Nothing I'm signing says I won't get pregnant, but if I did get pregnant, my data would be excluded from the study findings, which would be like stealing, since they still would have gone through the expense of having a $23,000 device implanted in my heart.

So yeah.

I want to do the study. But I don't think I can. Which would I regret more: giving up a chance to minimize my migraines or giving up 12 months of trying to have a baby? I'm fairly certain I would regret the latter option more. It's not a pleasant choice to make, I'll tell you that.

Yes, I'm still obsessing. Yes, I expect to change my mind a few more times before I have to make a final decision. Yes, you can expect to see more neurotic posts about this. I do have other things to write about, but I just can't get this out of my head. Every time I start to write a post, I start writing about the study instead. So bear with me.

I like waffles. They are far superior to pancakes. I don't love waffling, however. And that's what I'm doing. I don't know what to do about this migraine study. Every day I seem to have a different opinion. I suspect I'll end up doing it, but every time I think about taking a year off fertility treatment, I start to cry.

I mean seriously, how could I NOT do this study? I've had migraines my entire life. And they suck. They suck so badly. I can't imagine my life without them. I have a feeling that without migraines my life would improve so dramatically in ways I can't even begin to project.

And yet… I would gladly suffer migraines forever in exchange for a baby.

This isn't even a choice between eliminating migraines or having a baby, though. It's conceivable (no pun intended) that I could have both… have the surgery, and a year later get pregnant. It could happen. It's also conceivable that neither would happen. I could have the surgery, still get migraines, and still never have a baby. I could also choose not to participate in the study, not have the surgery, still get the migraines, and still never haver a baby.

If I did the surgery, took a year off, and then in ten years still found myself barren, I know I will always wonder what would have happened if I hadn't taken that year off. If I don't do the surgery, and still don't manage to have a baby, I know I'll still have migraines. But will I regret the migraines as much as I would regret not trying for that year? Egads, this is hard.

I went in Friday for my initial screening appointment for the study. I swear, the study criteria was written FOR me. And they checked to make sure I have a PFO. I had a little performance anxiety, oddly enough. What if it wasn't there anymore? Yeah, um, spontaneous PFO closure doesn't happen. And anyway, it was there. The test was pretty cool, actually. When the PFO was originally discovered, it was visualized by doing a transesophogeal echocardiogram, which seriously… not so pleasant. Right. So what they did was put these sensors on my head… I guess they were like an ultrasound probe, only small and attached to my head. There was gel and everything (pretty yuck). They used the sensors to listen to/visualize my cranial artery. Then they injected a saline solution that had been agitated so it had lots of little bubbles into an IV line. Very shortly after the injection… snap, crackle, pop… all those little bubbles showed up in my cranial artery; a sure sign of a patent foramen ovale.

The funniest part of the whole thing was explaining to the doctor that before he attached the sensors to my head, I'd need to take off my wig. I don't talk about it much here, but I'm an Orthodox Jew. Orthodox Jewish women cover their hair after they are married. Some women wear hats, some wear tichels (scarves), some wear snoods, some wear wigs. I used to wear hats, but I found them cumbersome (not to mention I look ridiculous in hats). Snoods aren't professional. I couldn't keep scarves on. And I was tired of explaining myself to coworkers and clients. So I started wearing a sheitel (wig). Anyway, mostly people don't realize I'm wearing a wig, except for other Orthodox Jews who can spot a sheitel a million miles away, and it's not really something that comes up in conversation. When people find out about it, they kind of flip out. Anyway, I said to the doctor that before he put on the sensors, there was something I had to tell him, and it was going to freak him out a little, and that's okay. "I'm wearing a wig, and no I'm not sick, it's really weird, but Orthodox Jewish women cover their hair after they get married." The doctor didnt' even flinch. He didn't wince. He didn't have any of the normal reactions. He said, "okay, no problem. I didn't know that." When I told him some women wear hats, he remarked that come to think of it he has a neighbor who always wears a hat. I'm sure after I left he talked about what a freak I am, but kudos to him for not freaking out in front of me. 🙂

Right. Anyway. Back on topic. The study is a dream come true. The protocol was written for me. It's like someone has been following my life and taking notes and designed a study just for me. I'm 100% qualified and the only thing left is to do a month long headache diary on a palm pilot thingy they provided and that's just to get a baseline before

And yet… telling an infertile that she has to purposely not get pregnant for a year….? I'm starting to cry just thinking about it. So pardon me if for the next month I'm a little fixated on this stuff.

One interesting note: I had to take a pregnancy test at the appointment yesterday, and it came up negative. So maybe my hCG is bottomed out. It was a urine test, not a blood test, so I'm not sure, but I am definitely making progress.

I like waffles. They are far superior to pancakes. I don't love waffling, however. And that's what I'm doing. I don't know what to do about this migraine study. Every day I seem to have a different opinion. I suspect I'll end up doing it, but every time I think about taking a year off fertility treatment, I start to cry.

I mean seriously, how could I NOT do this study? I've had migraines my entire life. And they suck. They suck so badly. I can't imagine my life without them. I have a feeling that without migraines my life would improve so dramatically in ways I can't even begin to project.

And yet… I would gladly suffer migraines forever in exchange for a baby.

This isn't even a choice between eliminating migraines or having a baby, though. It's conceivable (no pun intended) that I could have both… have the surgery, and a year later get pregnant. It could happen. It's also conceivable that neither would happen. I could have the surgery, still get migraines, and still never have a baby. I could also choose not to participate in the study, not have the surgery, still get the migraines, and still never haver a baby.

If I did the surgery, took a year off, and then in ten years still found myself barren, I know I will always wonder what would have happened if I hadn't taken that year off. If I don't do the surgery, and still don't manage to have a baby, I know I'll still have migraines. But will I regret the migraines as much as I would regret not trying for that year? Egads, this is hard.

I went in Friday for my initial screening appointment for the study. I swear, the study criteria was written FOR me. And they checked to make sure I have a PFO. I had a little performance anxiety, oddly enough. What if it wasn't there anymore? Yeah, um, spontaneous PFO closure doesn't happen. And anyway, it was there. The test was pretty cool, actually. When the PFO was originally discovered, it was visualized by doing a transesophogeal echocardiogram, which seriously… not so pleasant. Right. So what they did was put these sensors on my head… I guess they were like an ultrasound probe, only small and attached to my head. There was gel and everything (pretty yuck). They used the sensors to listen to/visualize my cranial artery. Then they injected a saline solution that had been agitated so it had lots of little bubbles into an IV line. Very shortly after the injection… snap, crackle, pop… all those little bubbles showed up in my cranial artery; a sure sign of a patent foramen ovale.

The funniest part of the whole thing was explaining to the doctor that before he attached the sensors to my head, I'd need to take off my wig. I don't talk about it much here, but I'm an Orthodox Jew. Orthodox Jewish women cover their hair after they are married. Some women wear hats, some wear tichels (scarves), some wear snoods, some wear wigs. I used to wear hats, but I found them cumbersome (not to mention I look ridiculous in hats). Snoods aren't professional. I couldn't keep scarves on. And I was tired of explaining myself to coworkers and clients. So I started wearing a sheitel (wig). Anyway, mostly people don't realize I'm wearing a wig, except for other Orthodox Jews who can spot a sheitel a million miles away, and it's not really something that comes up in conversation. When people find out about it, they kind of flip out. Anyway, I said to the doctor that before he put on the sensors, there was something I had to tell him, and it was going to freak him out a little, and that's okay. "I'm wearing a wig, and no I'm not sick, it's really weird, but Orthodox Jewish women cover their hair after they get married." The doctor didnt' even flinch. He didn't wince. He didn't have any of the normal reactions. He said, "okay, no problem. I didn't know that." When I told him some women wear hats, he remarked that come to think of it he has a neighbor who always wears a hat. I'm sure after I left he talked about what a freak I am, but kudos to him for not freaking out in front of me. 🙂

Right. Anyway. Back on topic. The study is a dream come true. The protocol was written for me. It's like someone has been following my life and taking notes and designed a study just for me. I'm 100% qualified and the only thing left is to do a month long headache diary on a palm pilot thingy they provided and that's just to get a baseline before

And yet… telling an infertile that she has to purposely not get pregnant for a year….? I'm starting to cry just thinking about it. So pardon me if for the next month I'm a little fixated on this stuff.

One interesting note: I had to take a pregnancy test at the appointment yesterday, and it came up negative. So maybe my hCG is bottomed out. It was a urine test, not a blood test, so I'm not sure, but I am definitely making progress.