Thursday, January 26, 2012

For Science

Well, our appointment yesterday went well. We filled out humongous questionnaires about everything from snoring and sleep habits to sexual satisfaction to depression levels. We each gave blood (2 vials for Ian, 8 for me (my record!)), and I had a physical exam. All of this was stuff that was needed for the study - extra stuff above and beyond what we would have done with the normal practice. Some of it is just to quadruple ensure that I qualify for the study and am healthy and much of it is stuff that they can use for further research and to make connections between infertility and a lot of other things in the future.

Ian and I both agreed to let them take extra blood for a variety of different storage locations to potentially use later. Ian also agreed to give extra man-juice (ewwwww). They had to look at me physically for all kinds of things - how much acne I have, and hair... All stuff that can potentially later be connected to other things - how I react to drugs? Who even knows. Medical studies are awesome!

So, anyhow. Ian and I were already signed up for the IUI Orientation on February 6th. So, we'll be able to complete everything else at that time. He'll give his sample, I'll give two more vials of blood, and we'll get oriented. Then, next cycle, we're good to go! I call them on day 1 and come in on day 2. I start taking drugs and it goes from there.

With the way the timing looks, I'm guessing early March for actual first attempt at IUI. If successful, I'll have a Thanksgiving baby. If not, we'll try try again!

So, anyhow. The study. The short version is as follows:

I will be taking one of three drugs that help with fertility. Had I not been a part of the study, I would be taking Chlomid. With the study, the three choices are:
  • Chlomid
  • Letrozole
  • Menopur
They are looking at the effectiveness of each of these drugs in treating infertility as well as at the incidences of multiples with each. They are hoping to find that Letrozole has the same or higher level of success, but with fewer incidences of multiples, and for this study to be a step on the path to that drug gaining FDA approval for this use (infertility). It is a semi-blind study, and random. So a computer will randomly assign me one of the drugs. If it is the Menopur, we will know because that drug is administered through a shot, so instead of getting pills, we'll be getting the tools to inject me at home. If it is Chlomid or Letrozole, neither I, nor the doctors, will know which until the completion of the study. In any case, any of these drugs should help me get pregnant with IUI. Hopefully with just one baby. Or ya know...two babies could be cool too. Or more?

Ummm...that's a topic for another blog post.

Anyhow. If you are super stupid nerdy like me, you can find the full details of the study here.

Once I'm in a cycle - so, starting in February - there are 8 visits to the clinic for me per cycle (1 for Ian). That's per 28ish day menstrual cycle. So like 2x per week. So I'm going to enjoy this week and a half away from UCSF, starting with a jaunt to New Jersey for my cousin's daughter's Bat Mitzvah this weekend (YAY ALYSSA!). But don't get too excited thinking it's an entirely doctor free week and a half. Oh no! Big Mammogram Appointment is on Monday! Boob squishin' time!!! I can't remember my last actual week without a blood draw, dr visit, test or something. Sigh. I guess I should get used to it!

At least I get to see these punims in the meantime!

lex

Wednesday, January 25, 2012

Consenting

Thank you so much to everyone who commented on my last couple of posts. I've been out of town for most of the last week and haven't replied to much, but each of those comments gave me a little smile when I saw them come in. I returned from Dallas last night and I'm leaving tomorrow for New Jersey for the weekend.

But today...today I'm off to UCSF for my first big appointment with The Study. Ian and I each have to sign 15-page consent forms and they have to do a lot of tests on me. The appointment is supposed to take anywhere between 2 and 4 hours or so. It is day 2 of my cycle, which means they can do 90% of the tests they need to do on me. Then when we are back there for our IUI Orientation in a couple of weeks, they can do the rest. So, I am looking forward to things happening fast.

I don't feel nervous today. I imagine I'll be giving a lot of blood and receiving a lot of information. I don't mind either of these things (although one I like more than the other). I also will be meeting the doctors who run the study as well as Gloria, the woman I've spoken to on the phone about this all. We're pretty sure this isn't a masturbating visit for Ian. Heh. Gross.

I will try to post this afternoon/evening and tell you more about the study, since I expect I'll understand it even better and have way more information. And I can also let you know how the appointment went. In the meantime, we're getting moving, and I'm nervous and excited and ready.

Also, I woke up to a text this morning from a lovely amazing dear friend wishing me luck and employing the title of an awesome 80s song/movie. I didn't even know she was paying that much attention to this all (I mean, enough to realize it was today). She's a non-facebook user, even! I just have to say how much that meant to me. I don't know that my family, far away across the country, is paying that much attention. So thank you, love, for that.

Talk to you all, later.

Wednesday, January 18, 2012

All I Have to Do is Dream

I have had 3 dreams in the past week, that I have recalled upon waking, about either being pregnant or having a baby. I used to have these dreams all the time. Hadn't had one in months. I think that knowing we are taking this next step has allowed some part of me to turn hope back on, whereas, for self-preservation purposes, I had really turned it off for awhile. Still trying to be cautious in my optimism.

Monday, January 16, 2012

Too Wordy to Timeline

This is probably going to be pretty boring to those who aren't interested in the details of how this has all gone, and how it all works. But for those who are curious about the process - how we got here - what is happening now etc, this gets you up to speed. I'm gonna take you from the beginning to the present, so that from now on I can just talk about what is happening, without having to go back and explain a lot of background. So, this is the background!

How we got from there to here (and where is here, anyhow?) - a timeline with lots of facts and words, but minus most emotion:

May 2009 - Ian and I leave to go on our big 14-month journey around the world. At this point I go off of the hormonal birth control that I've been on and off (mostly on) since I was 18 in 1994. We intend to start trying for a baby after our trip, but trying to keep up with hbc while roaming the world seemed impractical at best, so that was that.

June or July 2010 - Stopped all birth control, but weren't officially "trying" until insurance was going to kick in.

September 2010 - Insurance kicks in. We go for it. A friend lends us one of these fertility monitors, so we feel good knowing that each and every month we are hitting the right time:
Around this same time I go to my Ob-Gyn (who I love, by the way) and mention that we are giving this a go. She says, "Great! Come back if it hasn't happened in six months!"

March, 2011 - Went back to check in with Dr. Norrell (Ob-Gyn). She wasn't too concerned. Wanted to make sure we knew how to do it and when to do it. We did. She sent me on my way and said to come back again in 6 more months. Most insurance won't cover any fertility anything before a year of trying, so....

September, 2011 - Normal yearly apptment and more than one-year trying check-in. At this point the doc gave me orders for 3 tests. Two blood tests for me and one semen test for Ian. My tests both had to be on specific days of my cycle.

October/November, 2011 - Tests taken, results normal. My doctor states, "Ian's semen analysis looks great!!!" which makes me laugh. Ian proclaims it the nicest thing a lesbian has ever said about his semen. We decide to do an HSG (a test that looks at my fallopian tubes on an xray) and after that she will give us a referral to a specialist.

December, 2011 - Took a day off work for the HSG. It was really unpleasant and painful and crampy. One fallopian tube is definitely fine. Other tube likely spasmed so we can't be 100% sure, but he thinks it looks fine as well. Doctor Norrell calls me when she gets these results, and refers me to a couple of potential clinics. She tells me, "Call me when you're pregnant!"

We call the clinics and decide to go with the one that takes our insurance (we will be covered 80% vs 50%). This is UCSF.

(Side note on insurance coverage: We will be covered 80% up until the insurance has paid $2000 (which will happen in an instant) and then we pay 100%. If we pay $3500 a year then the insurance kicks back in and covers 100% for the rest of the year. This isn't bad. We don't need pre-authorization and many people don't have any infertility coverage. But insurance is confusing and never really makes sense to me. And we've already spent well over $1000 out of pocket for all of these tests and I have a feeling that doesn't count toward the $3500, but I'm not sure. I feel like I have no grasp at all of how much we will/could spend over the course of this, and ultimately, that depends on a multitude of unknowns, the biggest being: how long will it take and what treatments will we end up receiving? There is good news on this money stuff, though, that we'll get to in a minute.)

I make us an initial appointment with the man who is about to become my new Reproductive Endocrinology and Infertility Specialist, Dr. Tran. I pick him because he has the first available appointment and worry that it means he sucks. We send in about 20 pages worth of paperwork (mostly questionnaires) and all our previous test results.

December 28 - We go meet Dr. Tran. And he is awesome. He is the exact style of doctor I need. He tells me EVERYTHING. He draws me diagrams. He wants our input in the choices we make. He explains things clearly. I almost have to push him to tell me what he thinks is best. For those who know me, you'll know this is PERFECT. So, we walk away from this appointment knowing that we'll hear from his nurse in the next week with all kinds of information.

What we learn at this appointment:
  1. As I expected, IUI, with Chlomid, will be the next step for us.
  2. But before that, we need to figure out what's up with that other fallopian tube. Dr. Tran doesn't think it sounds like a spasm, based on how the HSG was described by the dr. who did it. He wants me to get an exploratory laproscopy to make sure that tube is OK. Some problems with a fallopian tube can really impact fertility. And knowing whether or not that tube works will be the difference between doing 3-4 cycles of IUI or 4-6 (before moving on to something else). He also wants to review the actual xray screens.
  3. I have plenty of plenty of eggs in both ovaries!
  4. If my fallopian tube is fine, our case will be officially what they consider "unexplained infertility" because all our test results come back looking great. But after a year of trying (6 months, actually, for the over 35 crew), you are considered infertile. Cause it ain't working on its own.
  5. I am no longer "a spring chicken" and about 1/3 of my eggs are likely no good.
  6. My pregnancy, should it occur, will be considered high-risk for three different reasons. 1 - I am over 35, 2 - Fertility treatments and 3 - Because I have had a LEEP before.
  7. My thyroid levels are the tiniest bit high for being pregnant. Really ever-so-tiny. But since I am already high risk, he thinks I should take a very small daily dose of thyroid medicine.
  8. There are several more tests to be done before we can get started (many are the same tests we would routinely get after becoming pregnant, if we weren't having these treatments).
  9. If we don't hear from his nurse by the following Wednesday (because of the holiday), give her a call.
December 29 - Dr. Tran's Admin Assistant, Annie, calls me, so I don't have to wait for his nurse to be back in town. We get signed up for the IUI orientation that is required before we can begin treatment, and will be going to that on the first Monday of February. (Due to holidays and travel on our part, we can't go earlier.) Among other things, we will learn how to inject me with hormones at home. Oh boy! Anyhow, she goes over EVERYTHING with me on the phone and emails me all the information I need, including a massively overwhelming checklist of things that I have to get done. I freak out a little. I call Dr. Norrell and leave a message about scheduling a Laproscopy. And I get my thryoid prescription filled. Generic version, since that's what the pharmacy has in.

December 30 - I pick up xray films from the hospital where I had my HSG and head out of town for the weekend.

Dr. Norrell calls me back and tells me that she is in contact with Dr. Tran and that she is happy to do the Laproscopy for me and remove the fallopian tube, if need be, but that she and Dr. Tran decided that he should really look at the xray films first. I love how good both of these doctors are at being in touch with me, and each other.

I make the mistake of looking up more info on the Laproscopy and start to freak out about this surgery and the idea of potentially losing a fallopian tube.

January 3 - I wake up with hives all over my body. Suspect thyroid meds. Begin ODing on Benedryl (for the next week).

I drop off the xray films on my way to work.

That evening I get a call from Dr. Tran. Laproscopy not needed! Once he saw the films, he believed I did, indeed spasm, and all is well with my tubey tubes. So, we can go with the plan of 3-4 IUI cycles and carry on.

January 7 - Ian gets hecka blood drawn.

January 10 - Dr. Tran calls to tell me that he thinks I would qualify for a Government Study being conducted. I would still be treated at UCSF, and he would oversee, but he would no longer be my primary doctor. The pro: FREE FUCKING IUI. UP TO 4 CYCLES!!! Every single thing included. The only potential cons he could see: Might have to have more up-front tests and might end up on a drug with a higher likelihood of multiples than Chlomid (there are 3 potential drugs I could be given). I tell him to please give my name to the study Coordinator.

Gloria, the study coordinator, calls me and asks a bunch of questions and gives me way more info about it. I tell her that my biggest concern is that it'll delay us a long time. She doesn't think it should delay us at all. She emails me all kinds of detailed information.

Ian and I discuss for like 32 seconds and decide to go for it. We're in!

January 11 - Hives are finally gone. I'm back on thryoid meds - this time non-generic (all good so far, knock on something).

Now - So, that's where we are. I still have to get a bunch of blood work done, and we still do the Orientation on the 6th of February. I have an apptment to get a mammogram (before I start fertility drugs, this is important). But beyond those last remaining things that are part of my over-all treatment at UCSF, everything will be moved to the study (which is with Dr. Cedars) I won't pay for apptments, drugs, ultrasounds, or the IUI treatments. If it works within those 4 cycles, that's that! If it doesn't, I'll go back to Dr. Tran and we'll discuss our options from there. We have a very long appointment on the 25th of January, to sign our consent forms, do a bunch of tests, etc. If the timing works out with the timing of my cycle, we should be able to do our first IUI cycle soon after our orientation.

At some point I'll tell you more about the trial - what it means in terms of my treatment, as well as what they are looking at. As a person who totally nerds out about medical stuff, I'm actually pretty excited. And that's that!

So, the end for now. Or more accurately...to be continued.....








Friday, January 13, 2012

To Say or Not to Say

Thanks for coming with me on this journey! I really don't want to start this whole thing off with negativity, but I sort of feel like I need to get this out there before I carry on with the chronicling of this thing we're going through. I know it's hard for people to know what to say in difficult situations. Believe me. I'm the queen of not knowing what to say. And I also know that there is an urge to say something. Anything. To fill silence. To show support. So, I just thought to myself, "Why not be upfront?" I can't speak for anyone other than myself. I can't even speak for Ian (although I'm hoping he'll pipe up around this blog now and again). But I can tell you, at least, what it is that makes me feel good to hear and what makes me feel bad. And I can tell you that if you are here reading and interested in my journey and in understanding, I appreciate it, no matter what you say. And I love you. OK?

So, all that out there, here's what a girl wants:

Cheerleaders! Clearly, I never was one, and I've never been on a sports team that had them, but I could use some now. All I really want is to know that my friends wish us well and believe that things'll be great in the end of all of this!

Information. I am a researcher. I quell my anxiety with facts and information. So, if I'm about to experience something that you've experienced, I am always curious about how it was for you. I like facts and science. Articles, websites (valid ones) and books are all my friends.

Things I want less (and I'm going balls-out honest here):

Pity. Just blatantly doesn't help or make me feel good. That is probably obvious. I really do believe we'll be fine and get through this happy and strong and with the family we dream of. So don't pity! Cheerlead!

Religion. I respect those of you who have that kind of belief and faith, but know that Ian and I do not. When people say they are praying for me, I just turn that into my head as "sending good thoughts my way" and take it as a really nice and caring thing. But I think it's important for people who want to give us to support to realize that we are not looking to any sort of God in this. Our faith lies with science, our relationship, the goodness of humanity etc.

The Saying of Not Helpful Things. Hmmm. This falls into a few categories, but there are two things that in particular feel really bad to me.

The first goes all the way back to when we first started trying to get pregnant and continues and continues. The last thing I have ever wanted to hear (and this is one that I know is a relatively universal dislike among people attempting to procreate) is anything along the lines of, "Stop worrying and it will happen"..."Don't stress about it"...."Stress is bad for babymaking"...."As soon as you aren't thinking about it, it'll happen" etc etc etc. All I can really say about this is that, while of course stress affects health, and fertility is a part of that, telling someone not to stress or worry about something is just not nice. Whether or not you have been through this before (having children, infertlitiy etc.), I feel the same about this. First of all, no one should really be the judge of my stress or worry level other than myself (and maybe my doctors). Second, telling someone to not think or worry or stress about something that is very important to them is just counter-productive and not helpful. It's simply not going to work...it's not that easy. And, also, when you're having trouble conceiving, you have no choice but to think about it. I could not think about it and not get pregnant for years and years and never go for the help we will ultimately likely need to conceive. But I prefer to think about it, and take the steps I need to take. In fact, the only thing I'm kicking myself about in this whole thing is not going for help earlier, to be honest. Because I was trying so hard to not stress think or worry about it. Finally, and maybe most importantly, it feels like blame. Like maybe, just maybe, we aren't getting pregnant and it's all my fault because I can't stop thinking about it and just relax like a teenager in the back seat of a car. Nuh uh. No thanks. The last thing I need is to feel guilt, shame or blame. And frankly, nothing makes me more worried or stressed than guilt, shame and blame! So, there's that.

The second thing is a comparison issue. I have a really hard time/viscerally bad reaction to the sort of attempts at consoling me by expressing how much better off I have it. I feel like it tends to happen in a, "At least you have a partner" or "I want babies too and don't even have prospects" kind of way. And, I guess the best way to explain why this is not helpful to me is that it just feels distancing. It puts distance between me and whoever is expressing this. Please please please do not misunderstand me here. I am so so happy, as a friend, to talk about those feelings. I want to be there for my friends through whatever hurt they are experiencing regardless of what hurt I might be experiencing! And I feel terrible if the things I am going through are emphasizing to them more any hard things that they are going through. But please understand that your pain is not a consolation to me. It doesn't make me feel better about what I'm going through. Of course it doesn't! I know how lucky I am to have Ian and be on this journey with him. But it doesn't take away the hardness of what I'm going through. We all have our baggage and our shit and our hard times. I don't want to compare. I just want to be there. And want you to want to be here for me. And I think that those kinds of comments just make me feel like you don't want to hear about what I'm going through. And of course, it's fine if you don't (although if you are here, I assume you do). But if that's not your intention, not what you are trying to express, just please know that this is what I read from it.

Blargh. Let's get back to where this started. With me saying hi and telling you I'm glad you're here. Hi! I'm glad you are here. I have a lot of work to do this week for a committee I'm on. I also have a lot of work to do health-wise, between my brain, my braces and my baby-making. But I have a few more posts I want to get up, including one that just sort of tells you where we've been and where we are in terms of this process. So I'll try to take some time to do that soon.

Thursday, January 12, 2012