October 27, 2010

Need Doggie Prayers

I think I've mentioned that one of our dogs has been limping. Mom and I took him to a veterinary neurologist this morning. He's undergoing an MRI.

He may have a very rare nerve sheath cancer.

It may be in his spine.

They may not be able to do anything about it.

We will find out in about 3 hours. He's the youngest of all of our dogs - he's 8. He's the only male pet I've ever had. I refer to him as our "baby boy". Out of the 3 dogs R and I have had together, one other one is still with us and the third one died several years ago of congestive heart failure when she was only 6.5 years old.

All I can keep thinking is "Are we destined to lose every creature we love like a child at an early stage? Does God really hate us that much?" 7 dead babies, 1 dead dog, possibly another.

I'm not coping well. And somehow, I have to pull myself together enough to attend a work meeting (thankfully over the phone rather than in person) in two minutes.

October 23, 2010

Gold Star Uterus

Beta 3 integrin results are in: I tested positive, which is good. So between that and the other endometrial biopsy testing that also produced good results, I guess this means that my uterus isn't the issue.

Mo and Libby, in answer to your question about what the other biopsy testing was - they were checking for CD57+ cells, which they don't want to see, and FoxP3+ cells, which they do want to see.

I had none of the CD57+ and FoxP3+ cells that were "adequate in number, suggesting adequate stromal regulatory activity" according to the report.

So I guess it's looking like my immune system in general is the culprit.

We also got the results of the repeat bloodwork. While the NK cell levels in my uterus were good, they were still slightly off in my bloodstream. Not a surprise, as that was also the case during the transfers we did for IVF retrieval #1 a few years back. IVIg is still recommended, no surprise there.

My Leukocyte Antibody Detection levels (T cells and B cells) were also low, so LIT is recommended. And one of my Cytokine ratios was high, so Humira was recommended.

So, what's the plan?

I'm not doing the Humira. It has an increased risk of cancer, usually lymphoma, which is in the same family of cancer that my dad has (leukemia) and that his dad had (multiple myeloma). R and I decided pretty quickly that it's not worth the risk, and that view hasn't changed. If Humira is what's standing between me and a biological child, so be it.

I think we're going to do LIT. I'm still afraid of crossing the border, but we did go and get our passports yesterday and requested expedited processing. Two rounds are being recommended (3 weeks apart), so hopefully we can do the first trip in November and second trip in December.

We also plan to do the IVIg. And hopefully transfer in January.

At the same time, I'm ready to be done with this and move on to the next step. (Or so I say now - I realize I may sing a different tune if we wind up with one single line in January/February.)

To that end, I've contacted a local adoption agency to request a recertification application, and I've scheduled carpet cleaners to come out in mid-November. I'm not going to obsessively clean, but we have 4 dogs and 2 (indoor only) cats, and our carpet is just embarrassing.

I also need to work on getting a pool fence installed, and once we get the application completed and fence installation scheduled, I'll contact the social worker to do the home visit. If we can get that done by the end of November, we should have our certification around the time we get transfer results.

We haven't totally decided which way we would go on the adoption front. I'm still hesitant to do international for fear of being rejected. What I've decided to do with the home study is give the health forms to our family doc and mention that certain things would possibly disqualify us, but leave it up to her whether she thinks they are a possible impairment to our ability to parent and puts it on the form or not. (I haven't seen the form yet, so I don't know if it's a very specific questionnaire or if it just asks for a general statement.)

Then during the home study visit, if questions come up we'll answer them honestly, but we won't go out of our way to point out things that the social worker doesn't ask about. Once the certification is done, we'll request a copy of the home study and review what the report says and decide whether we think it would knock us out of the running internationally.

We'll see what happens.

October 12, 2010

Good News - Not Sure What To Do With This

The results of the NK tests that were done on the biopsied tissue came in today. Apparently there are two types of cells they look for - one type is bad, so they don't want to see that in the endometrial lining, and the other is good, so they want to see lots of those.

It turns out I have none of the bad cells and lots of the good cells.

In other words, good news on one small front in the infertility fight.

It's been so long since we've gotten good news relating to infertility that I just sat there stupified for a minute. I don't think I trusted my brain to interpret what I was hearing, because I had to ask "You mean, my test results are good? Really??"

I'd like to think that this means my uterus isn't killing off the embryos, but I haven't heard the results of the other endometrial biopsy test (for the beta-3 integrin) yet, so I guess that thinking is still a bit premature at this point.

I sent an e-mail to ask the clinic when they think those test results might come in, so hopefully we'll also have that answer soon.

October 05, 2010

A Random Thought 'Dancing' Through My Head

This is completely unrelated to anything about infertility, but...

I'm catching up on last night's TV, and can I just say - I hope I can move like Florence Henderson when I'm 76 years old!

I couldn't even dance half as well today, when I'm less than half her age. That lady is amazing!

October 04, 2010

Survived the Biopsy

Apparently I should have researched the endometrial biopsy process a bit before undergoing it.

I was thinking that it involved literally snipping some of the uterine lining out, much like the sudden, sharp pain felt when a dermatologist uses that little tool to cut a chunk of skin out of your arm/leg/back/wherever to make sure it isn't skin cancer. At least, I assume it's a sudden, sharp pain, given the face R makes when it happens. Fortunately I haven't had occasion to undergo that particular form of torture.

Anyway, based on that assumption, I showed up to the appointment this afternoon more freaked out about a procedure than any other time I can remember in the last decade or so.

It wasn't fun, but fortunately it also wasn't as horrible as I imagined it to be.

Actually, for the first bit of tissue that local RE took, I just felt a little bit of mild cramping. Had the process stopped there, I would have classified it as "no big deal at all". But I'm having two tests done - the integrin-B (I think that's what it's called, too lazy to look it up at the moment), which RE is doing, and NK cell testing, which RI is doing.

Which meant that I had to have two bits of tissue removed, instead of just one. While the second bit was being removed, that was more like "lay in your bed moaning about really bad menstrual cramps" kind of pain. But I did a lot of deep breathing, and clearly I survived.

As soon as the second one was done, I took my feet out of the stirrups and sat up (probably subconsciously thinking that if I was in an upright position, he couldn't take any more tissue even if he wanted to).

Then he started to ask me about how many embryos we have, what protocol we used, what our next steps are. (Even though he's the RE I do all of my local monitoring with, so we've already covered this ground.)

But I tried to answer the questions anyway, and then I realized that my own voice was starting to sound a little bit distant and hazy and the room was starting to sway. Suddenly in the middle of a sentence about our protocol, I announced, "I think I'm going to pass out."

Fortunately I didn't, but they did have me lay back down and stay there for about 15 minutes. I don't usually get dizzy, and I've never fainted in my life, but I guess I had just stressed myself out about this so much that I got a little lightheaded with relief once it was over.

Oh, and after it was over, I found out that the tissue doesn't actually get cut out - some cells are sucked out with a pipette. If I would have realized that beforehand, I probably wouldn't have been so freaked out to begin with.

September 28, 2010

Big G.irl Pan.ti.es and a Biopsy Question

After my meltdown a couple of weeks ago and the subsequent crankiness, I think I am finally getting myself back together.

A few years ago, at my previous job, one of my co-workers had a sign on her wall that said "Put on your big g.irl pan.ti.es and deal with it!" As silly as it sounds, that sign has stuck with me.

So, I have located said pan.ti.es** and am dealing with all the infertility crap.

We haven't made any solid decisions yet, but I am going forward with the biopsy next week. I figure for all the weight gain, bloating, acne, and mood swings these hormones have cost me, I might as well get a couple of test results out of it.

And speaking of test results, since half of the bloodwork I had done last time didn't produce results we could be confident in due to possible heat damage, I have decided not to risk shipping the blood again.

So, we are doing what we do best - medical tourism.

The lab is about 3.5 hours from my dad, and we haven't been to see him in about 6 months. So next week we're flying in to the airport closest to the lab after work on Wednesday, staying the night, getting blood drawn the next morning, taking the day off, driving a couple hours up the coast to San Fran, staying there for two nights (including working remotely the next day), catching up with one of my co-workers who lives there, going to the farmer's market at the Ferry Building (we're only to Saturday at this point, people), driving up to see my dad, staying the night there, and then driving the 3.5 hours back down to the airport and heading home.

How's that for a 96-hour itinerary?

I saw my therapist yesterday. She asked the last time R and I went somewhere on vacation - no medical stuff involved - just the two of us. And sadly, I had to reach back 5 years to our 10th wedding anniversary.

Surely we've gone on a vacation like that since then? But my hormone-addled brain can't remember.

Maybe we really haven't. And the 10th anniversary was not a full vacation, just a long weekend. And while we tried to avoid anything medical related on that trip, an adoption possibility came up in the middle of it and we wound up coming 'round a corner at one point during the weekend only to find foot-long giant sperm on the floor. (If you haven't been reading for that long - I can't even believe I've had a blog for that long! - you think I am making this up. I assure you I am not.)

I almost forgot...on to the question: What was your endometrial biopsy experience like? Did it hurt? Is the pain going to be so intense that I may be likely to reach up and smack the doctor? (Which I have been known to do in the past. But in my defense, I was 6 at the time.)

My uterus cringes each time I even think about it. And the thought "What the hell am I doing?" has crossed my mind more than once.

** I can only imagine what kind of visitors I'd get with that phrase if the periods weren't included!

September 22, 2010

The Perfect Symbol of My Mood

The estrogen pills are making me cranky. They're making me gain weight at the rate of about half a pound a day, which really makes me cranky, but somehow I tend to think that I'd still be feeling cranky even without that highly annoying side effect.

Unless the pills made me lose weight at the rate of half a pound a day. Then I would love them.

But they aren't, and I don't.

And to top it all off, they make my skin break out horribly. Clearly my hormone levels are now even more imbalanced than usual - how can this possibly be helpful for achieving a pregnancy?

So here I am, highly annoyed by everything going on in my world (I hide that fact well, don't I?), including pretty much everything that poor R says or does. Me on estrogen is almost as unpleasant as me on Clomid. But at least on estrogen I haven't locked him out of the bedroom. Yet.

Tomorrow morning I have to get up earlier than usual, to fight traffic earlier than usual, in order to go have a lining check to see if I'm on track for the endometrial biopsy. I usually have RE's office e-mail me the order so that I can print it out and take it with me, rather than having them fax it to local RE and risk the fax getting lost or misplaced.

Being the model of efficiency, I printed out the order a few days ago. It's been sitting on the dining room table (aka the dumping grounds where my purse, piles of mail, etc. reside). So this morning I come downstairs and discover that the printed order is covered in cat hairball puke.

Pretty much sums up how I feel about the whole thing at the moment.

Lest you think I am completely without humor, I have thought of another addition to the "You Know You're an Infertility Patient When..." list: ...va.gi.nal discharge the color of a smurf is a completely expected occurance that doesn't phase you in the least.

September 18, 2010

Example A - Why I'm Too Tired For 'Big' (aka Post #250)

I had the consult with the reproductive immunologist this morning. It did not go well. I don't think it went particularly badly, either, but then again, at this point my judgment on those sorts of things is probably a bit askew.

I did my homework. I Googled, I read a lot of info online. This guy is with one of the most prominent RI groups in the country. He had great reviews on Yelp. (Let's not think about what it says about me that I'm now basing medical decisions - at least in part - on a community review website.) So when they asked me if I had a preference of doctors, I decided why not, everyone seems to love him, ask for him. So I did.

And it's not that I hate him. Or that I need to love the doctor I'm working with - at this point, I'm far beyond that. But I think that's part of the problem - at this point, I'm far beyond pretty much everything, and apparently it is all annoying me.

Let's start with the fact that the first thing he tells me is that the tests run in his lab, which account for 15 of the 37 vials of blood drawn recently, produced really bizarre results, and he thinks the vials may have been damaged by the heat while in transit. So, he has no confidence in half of my test results, and I need to have another 15 vials drawn (along with another 5 from R).

Then as he runs down the list of other tests, which were run at a national lab chain, he proceeds to mention that those kinds of labs generally aren't as sensitive at detecting this as some of the more specialized labs are. (What was making him say this is that in the past, through a more specialized lab, I've tested positive for APAs, but this time I didn't.)

So if he has zero confidence in 99% of the test results, why are we even having the appointment at this point? Not a great beginning.

It didn't exactly get better from there. The appointment can basically be summarized like this:
- Based on the current (screwy) lab results, he recommends 1 round of LIT. Depending on what the re-test shows, I may not need LIT.
- Based on the current (screwy) lab results, it doesn't look like I need Humira. Depending on what the re-test shows, I may need Humira.
- Based on the current (screwy) lab results and past (more confidence-inspiring) lab results, I need IVIg. Regardless of what the re-test shows, I need IVIg. But those tests will be re-done anyway, because the current (screwy) lab results don't provide a baseline that he is confident in.
- I need Lovenox. It should be half the dose I've been taking, once a day, until positive pregnancy test, at which point the other half of the dose I'm taking should be added in via a second shot each day. Hematologists don't know what they're talking about when it comes to using Lovenox in pregnant patients. (RI's opinion, not mine. It was RE who told me to go to a hematologist in the first place; it's not like I wanted to add yet one more doctor to the mix.)
- I need dexamethasone, pre-transfer and through the first trimester. This will save me from having to remind RE that he very reluctantly agreed to prescribe it for me. So there's one small silver lining. I had to get out the magnifying glass to find it, but it's there.

Here's how I thought the appointment was going to go:
- You need IVIg. (Check)
- You need LIT. (Probable check)
- You might need Humira. (Check, as in it's still "might" at this point)
- You need Lovenox, baby aspirin, folgard. (Check, check, check)
- You need dexamethasone pre-transfer and through the first trimester. (Check)

So part of what annoys me is I feel like he's not telling me anything I don't already know. And isn't that what a doctor is for in the first place? But then again, that's not entirely fair - he did say something about also testing my seratonin levels, because seratonin plays a role in uterine lining development. (Or something like that - I admit, at that point I wasn't really paying attention to what it does, I was just thinking "okay, make that 16 more vials of blood that need to be redrawn...")

Then I made the stupid mistake of asking what he thought our chances were. (70%) He looks at my age and says "Well, you're dealing with 36-year-old eggs..." (which were actually 34-year-old eggs when they were retrieved, thankyouverymuch) "...have you thought about donor egg?"

Seriously. SERIOUSLY? That just floored me. Not because it's shocking that a 36-year-old would get the donor egg speech, but because it goes back to some of the themes from my previous post. We were 28 when we started this. Back then, every RE's office we sat in, they looked at us and said "What are you doing here? You're still just babies!" I kid you not, we heard the word "babies" - meaning the two of us, not the kid we were trying to produce - many, many times. (Part of it is because R has always looked very young for his age.) And now, we've been in this hell for so long that we've gone from "you're just babies yourselves!" to "you may need donor eggs".

I just made some sort of noncommital sound and moved on to another question. Because if I don't have the energy for something like LIT, there's no way I'm going to muster up the stamina for donor eggs.

September 14, 2010

When Continuing Hurts More Than Stopping

When R and I first started undergoing treatments and I was new to the online IF world, I'd see women ask "How do you know when it's time to stop?" as they were trying to figure out the next steps in their paths. And the answer, invariably, always came: When it hurts more to continue than it does to stop.

As a relatively naive newbie back then, I couldn't exactly wrap my head around that.

I mean, really, how could it hurt less to stop trying (and possibly not have kids) than it could to sit in a chair and listen to your doctor rattle off all the (medical) things wrong with you and your husband and conclude by telling you that it just might never happen for you?

I planned to fight like hell until we got to the other side, regardless of what it took. I would just keep marching forward, doing whatever we needed to do, until we made it happen. As if determination is the only essential factor.

So we went through a lot, and still, stopping wasn't even a consideration. And then we lost baby #5 through miscarriage #4. And for the first time I started to understand, at least on a very vague level, how continuing could maybe hurt more.

But still, I wasn't ready to consider stopping.

So we continued to march: through a disasterous retrieval, a shockingly good retrival, thyroid surgery, and my dad almost dying.

And slowly, during all of that, I began to think about how much time we have spent. How much we have sacrificed, lost, to infertility. Financially, emotionally, time-wise, other dreams and plans. All in the pursuit of a dream that is still just as elusive now - if not even more so - than it was when we started in 2003. And how if we stopped, we could stop funneling all of our bank account to REs, we could travel without a medical purpose as impetus for the trip, we could buy a smaller house with a smaller mortgage and possibly work a smaller number of hours.

Then we had the most recent miscarriage in May. And we decided to pull out all the stops for one last attempt - antibiotic treatments, consulting with reproductive immunologists, even a biopsy to confirm that I have the beta-3 itegrin receptor (which is a good thing), even though RE is already pretty sure I have it.

No regrets. It's the motto with which I vowed to approach this entire process.

To that end, in the past month, I've had literally 37 vials of blood drawn. Ovulation could not be detected, so now I'm on estrogen, soon to be followed by progesterone, so a little piece of my endometrial lining can me snipped out of my uterus in a few weeks, sans general anesthesia. On top of all of that, it has been the most insane month of work in my entire life, and the next three or four will be just as crazy.

So I'm cranky. I'm freakin' tired. Exhausted, really. Bloated like a balloon and gaining weight at the rate of about a pound a day, thanks to the estrogen.

Then yesterday, all of the immune test results (accounting for 35 of the 37 vials) arrived. And I looked at the results. And I know with 99.9% certainty at least one of the things the RI is going to recommend is LIT.

And I Don't. Want. To. Do. It.

More accurately, I don't want to cross a dangerous border into Mexico to get it, and I don't want to drain our bank account to travel repeatedly to someplace like Europe for it. It's not the actual treatment I'm against, just what is involved in getting it.

So R and I talked about it last night. We didn't reach any decision yet. But we - or at least, I - did reach that moment. The moment where it finally hurts more to continue than it does to stop.

I don't know yet what we're going to do. R's feeling is go big (including LIT) or go home.

I don't know that I have "big" left in me.

August 31, 2010

You Know You're An Infertility Patient When...

...the lab tech knows you by your veins rather than your name. "Oh, I remember you, you're the one I have to draw in the top of your hand instead of your arm."

...early morning his-and-hers lab appointments count as a "date". "But honey, it'll be romantic, really - we'll get to see the sunrise on our way to the lab." (It was a good effort, but he didn't buy it. Apparently his idea of fun at 6 a.m. involves sleep rather than a needle being jabbed into his arm. Imagine.)

More to come later (hopefully this weekend), but I just wanted to make a quick post since I've been quiet the last few weeks. Nothing majorly exciting going on, just beyond crazy busy at work. Since I was in a humorous mood for the moment, I figured I'd share...

August 10, 2010

As I Said...

It's a week later. (Okay, 9 days, though I did actually test 2 days ago, so that part was exactly a week.) Anyway, as I said in my last post...still only 1 single line. And then CD1 showed up.

So, no big happy surprise.

I guess the cramping I was feeling just before we left for vacation must have been ovulation rather than implantation. I used to only have a few sharp pinches around ovulation time, but within the past year or so I've been noticing a bit of spotting around that time and cramping rather than pinching. I wonder if it means my ovaries are covered in scar tissue from all of the retrievals? They've each been poked with a needle more than 50 times, so I wouldn't be surprised.

Oh, and about the hot tub - thank you all for the advice. I decided to follow the prevailing vote and stay out of it. Oddly enough, no one else expressed interest in going in again all week, which was particularly surprising given the group we were with.

One thing I am happy about (in that odd way that only someone who's been dealing with IF for a ridiculously long time can be) is that at least my post-ovulation progesterone levels seemed to be higher than they usually are, given all the symptoms I had. So maybe my body is functioning in a semi-normal way in at least one respect.

And now, I need to cross my fingers that it continues to do so. I spoke with RI's office today. I'm still waiting for the test orders, but one of them will be an endometrial biopsy, which from what I understand has to take place at a certain point after ovulation. So I will be starting up with the OPK pee sticks in about 10 days. Given my ovaries' propensity to quiet down when I need them to work (and to work when I need them to be quiet), I could wind up going through quite a few sticks.

To that end - and since I kind of pigged out on vacation - I regrouped again yesterday to cut the refined sugar and caffeine out of my diet.

It's day 2. I'm hungry, I'm cranky, I'm sleepy, and I. Want. Sugar.

I've been eating fruit in an attempt to compensate - strawberries, raspberries. I cut up an entire watermelon last night. I eyed a banana as dessert. Of course, it would have been much better sliced up over a bowl of ice cream and chocolate sauce, but I figure I have to make it for at least 48 hours. :-) (Ideally, much longer.)

I know it gets better. It's just this initial withdrawl period that stinks.

August 01, 2010

I'm an Idiot

In more ways than one. And I have the receipt to prove it.

Despite all evidence to the contrary, I still cling to the faint hope that I can be like a normal person who has sex, gets knocked up, and pops out a kid 9 months later.

R discourages hip-propping after the deed, figuring that I don't have much of a chance of producing a normal, healthy egg sans fertility meds. But last weekend I ignored him and did it anyway.

So then on Thursday, I started having really bad cramps. As in, I-can't-remember-the-last-time-I-had-cramps-this-bad cramps. I even went home early from work.

And I was ticked, because we were leaving for a week at the beach yesterday, and the last thing I wanted was to be dealing with AF. But I didn't start to spot or bleed.

Then last night it occurred to me that my chest is sore, which rarely happens outside of pregnancy. This morning, the back pain started, and I've been having AF-like aching and pains all day long. Which I thought were maybe round ligament pains.

So I made R take me to the store to buy a test (first way in which I am an idiot, as proven by the store receipt for the test). Of course it was negative, despite my hopes to the contrary (second way in which I'm an idiot). And then after taking the test, it occurred to me that given that we had sex last weekend, I could only be a week out from conception at the very most, so if anything these are implantation pains and it's still way too early to test (third way in which I'm an idiot).

But now I don't want to hang out in the hot tub with our friends, and there are two more pregnancy tests stashed in one of the dresser drawers, mocking me and tempting me. And chances are 99,999 to 1 that in a week I'm going to be coming back on here to post that 1) AF has shown up, or 2) Still no sign of AF, but the tests still show only one stupid line.

In other news...I had a phone consult with an RE who believes in immune issues. She recommended IVIg - no big surprise there. I finally got myself together enough to send off my records to an RI as well, so I'm waiting to hear what tests he wants to order.

My dad is doing well enough that his oncologist now thinks he is a candidate for a bone marrow transplant. (The level of cancerous cells in his blood is low, but on the other hand his marrow isn't producing much blood, so he's still needing transfusions all the time - hence the recommendation for the transplant.)

So his siblings are getting tested, and we're waiting for the results. Our next FET is on hold until we know more about what's going on with him and whether I'll need to be tested as a possible donor.

My mother is having memory issues, not to the degree that I think it's dementia but still to a degree that is unusual for her and something to keep an eye on. She doesn't believe this, so we had another big blowout in which she: 1) accused my husband of lying, 2) accused me of trying to make her think she has Alzheimer's, and 3) accused me of making her upset enough to have a stroke. (This, despite the fact that I never raised my voice to her, even when she was shouting at me.)

We are still living under the same roof as her, but now all of our communication with her takes place through e-mails, which are sent to her and then printed out, logged in a binder kept in the kitchen, and I even go so far as to make a copy of the log sheet every time I add to it, so that I have proof in case she ever tries to remove an e-mail and edit the log, because that is something she would do.

And she thinks the problem is us.

I've also been doing some preparations for Plan B. More on that to come in a later post, but for now I need your thoughts - do I spend the next week staying out of the hot tub on the very remote chance that this may be implantation that I'm feeling, or do I throw caution to the wind, climb in, and say "Whatever will be, will be"? If you were me, what would you do?

(Also, Peaches, you commented a few posts ago that you'd be willing to chat about surrogacy, but I'm not sure how to contact you as your name doesn't seem to link to a blog?)

July 09, 2010

A New Post

There's a new post below. Thanks to Mrs. LC's comment on it, I realized that I had forgotten Blogger's quirky habit of using the date you start the draft as the posting date, even if you don't publish the post until a later date. So Mrs. LC, you didn't miss it at all - I just published the post last night.

Phoebe, totally agree with your comments about acu. I wasn't surprised in general that acu would be recommended - our first IVF RE recommended it - I was just caught off guard that current RE recommended it, because he doesn't seem to be the type that supports that kind of thing. (He's referred to some other alternative treatments as "vodoo" - his exact word - in the past.)

I've done acu immediately pre- and post-transfer for all of my transfers, and I've also done it for several weeks leading up to one of the transfers in the past, although not the most recent one. I was comfortable with that acupuncturist, but I have two friends who recommend another one, so I may try her this time around. Your point about getting established in advance is a good one.

July 01, 2010

Decisions (Sort Of)

I'm starting to calm down a little bit. (I think, anyway.)

We've made our first decision - we're going to give my uterus another try, probably in September or October. To that end, I've scheduled an appointment next week to talk with another RE about intralipids, and I'm probably also going to consult with an RI. Regardless of which one we go with, it means yet another out of state doctor, so if we do the full gamut of treatments (including the IV antibiotics), this will be a pregnancy that involves four separate states. Ugh!

I've also scheduled another appointment with RE. Last time, I was able to get in the next day, but this time the first available appointment was a full month out, so it won't be until the very end of the month. When we had our WTF appointment, all we knew at that point was that my numbers were low and looked like they had stalled. I want to know how likely he thinks it is that this most recent pregnancy was an ectopic and just bad luck.

I also received a somewhat surprising e-mail from RE's nurse. RE wants my most recent thyroid tests (taken in mid-May while I was still pregnant - they were normal), and wants me to get my thyroid levels retested 10 days before starting the estrogen patches. I asked her if he was thinking maybe that contributed to the loss, and she said he's routinely keeping a closer eye on patients with thyroid conditions.

The other surprising thing was that he also wants me to do acupuncture twice a week for the four weeks before transfer. I didn't think he was into any alternative treatments at all, so this was a bit unexpected.

Nurse said it was because my uterine blood flow during one of the one-day workups was low. I think that happened because I forgot the no caffeine rule and had caffeine both the night before and morning of the ODW. I was super careful to avoid it in the weeks leading up to the transfer, though, so I don't think that was really the issue. But I truly appreciate that he is trying to think of anything he can that might make a difference this time around.

I also met with ob/gyn last week. Surprisingly, he didn't think a laparoscopy is necessary in my case. He said even if I do have endo, cleaning it out won't really help with staying pregnant, it's more of an impediment to getting pregnant. But I've seen plenty of women mention being on dep.ot lupr.on for a couple of months before an FET to treat endo, so I'll mention it to RE and see what he thinks.

With regard to all of the surrogacy and adoption stuff, I'm still vascillating. I keep researching it all, and one day I think one option sounds great, and then the next day I see something about that same option that completely freaks me out. (Like a couple who got all the way to their court date in Ethiopia, and then the judge denied their adoption because the adoptive mom had taken anti-depressants for post-partum depression for a couple months half a decade before, even though Ethiopia is supposedly okay with anti-depressant usage from a couple of agencies I spoke with.)

The idea of just not mentioning our issues is tempting, but then I worry that if we do that, God will strike us down for our lie of omission by allowing R's heart to fall into an abnormal rhythm that triggers his ICD while we're in Ethiopia, most likely at the exact moment we would be standing in front of a judge. Because we have luck like that.

So for now, I've decided not to make any other concrete decisions about next steps. I will just continue to obsessively research while hoping that maybe maybe maybe the next transfer will be the one. Perhaps I should consider putting back 4 or 5 - you'd think out of that many, at least one would stick for the long haul.

(Yes, I am just kidding. Kind of.)

In the Wrong Club

I got a phone call this morning. I didn't recognize the number, but against my better judgment, I answered it.

It turned out to be a nurse from our health insurance company, calling to tell me that they had enrolled me in a special program. I assumed she was talking about a diabetes program, because I get calls like that from time to time. (I take metf.ormin for PCOS, and they mistakenly assume I'm diabetic.)

But this time, it wasn't about diabetes.

Oh, no. Instead, it was "I wanted to congratulate you and let you know we've enrolled you in the Healthy Baby Club program we offer..."

HA. HA HA HA HA HA.

I was tempted to say, "You know, I'm more of a Recurrent Pregnancy Loss Club kinda gal", but I behaved myself. I know it wasn't her fault - she just gets a list of people and is told to call them.

Apparently when they're generating these lists, they don't write algorithms to detect "fertility treatment codes followed by 10 hcg tests within a 5 week span, an ER visit and a very very early ob/gyn visit" and spit out a result that reads "WARNING: POTENTIAL PROBLEM. Call patient at your own risk."

June 23, 2010

Family Ties - A Pleasant Surprise

Occasionally, the horrible, painful, nightmarish situations in life can also cause something good to happen that otherwise wouldn’t have happened. I was reminded of that this week when I received an unexpected phone call.

Before I share more about the call, it would help to explain a bit about my family history.

I grew up with a very, very small immediate family. I was an only child, my mom was an only child, and although my dad has several siblings, most of them didn’t live nearby and I only saw each of them maybe once or twice that I remember while I was growing up.

To put it another way, when R and I got married, the picture of us with my family includes a total of 6 people – the two of us, my parents, a cousin (second cousin or twice removed, something like that since my mom didn’t have siblings) who was about 30 years older than me who I’d only ever met once, and the cousin’s husband. On the other hand, our picture with R’s family includes about 30 people, about 20 who traveled from out of state during the holidays to be there for us.

So you get the gist – I don’t really have a lot of close family connections.

When I was young, I begged my parents for siblings, but no such luck. Then one day when I was about 8 years old, my parents sat me down to tell me something: while I was an only child (my mom’s), I was also the youngest of 4 – my dad had 3 children from a previous marriage. That little bombshell caused some trust issues no small kid should ever have to have with their parents, but that’s a story for another post.

Anyway, it turned out that my siblings were in the tween and teen stages, and their mom had called my dad to say she was putting them on a bus and sending them to him for the summer, so my parents were kind of put on the spot and had to tell me. (There was a lot of acrimony between my dad and his ex-wife, who lived in another state, and he wasn’t able to see them much.)

So I got to spend the summer with them. That was 28 years ago. Other than that, we haven’t had much contact. There was some resentment on their part – as if I had taken their dad away. I understand it, and it doesn’t seem to be there as much anymore (my brother still brings it up occasionally), but it was uncomfortable to bear the brunt of that resentment as a child.

Since that summer, I’ve seen my oldest sister twice (once about 26 years ago and then in December, when dad was in the hospital), my brother twice (ditto), and I haven’t seen my other sister again. We've only talked on the phone a couple times more than that.

It’s always felt weird to know that I have siblings out there, but being raised as an only child, I didn’t have the opportunity to form the normal sibling bonds. As an adult, still living in a different state from them and not having a lot in common, it hasn’t gotten any easier.

So while we were in touch more while dad was in the hospital, I didn’t really share much about the infertility stuff we’ve been dealing with.

And so – back to the phone call – you can imagine my surprise when my oldest sister called me earlier this week and said that her daughter, who’s in her early 20s and has a toddler, would be willing to be a gestational carrier for us.

(Don't get all excited yet.)

Dad’s wife had asked a couple of weeks ago what our next steps are, and I told her that our doctor’s recommendation is to use a gestational surrogate. Then apparently dad called my sister and suggested that maybe she could be the surrogate, not realizing she had had a hysterectomy. So my sister asked my niece and then called me.

I don’t know that it will be a viable option for a variety of reasons, and even if it is, I don’t know that it’s an option we will chose to pursue anytime in the immediate future.

But I was really touched by the call and the offer. I spoke to my niece (who I met for the very first time in December), and asked her if she was sure she wanted to do this and why she was willing to do this for us when we haven’t really been in each other’s lives.

She sounded kind of surprised that she had to explain it to me – she said “That’s what family is for” in a very matter-of-fact, isn’t-this-what-every-famly-does kind of way.

It turns out my family is bigger than I thought. It’s still kind of a hard concept to grasp.

June 18, 2010

Finally

Beta #10 is negative. I can't believe I did a little happy dance over a negative beta, but I did.

The phlebotomist this morning said, "You, again?? Another stat hcg?" I think he's going to miss seeing me all the time.

June 14, 2010

Bouncing Around Like a Ping Pong Ball

Me without a plan is not a pretty sight.

I have been (figuratively, at least) all over the map this past week in trying to decide what to do next. Last Tuesday, about 2 minutes after R walked in the door, I announced that I didn't think we'd qualify for my first choice country for international adoption. He didn't even know I was thinking about international adoption.

On Wednesday night, he finished a work-related call and then walked into the room to find me e-mailing potential gestational surrogates. By Thursday I was on the phone with one of them. (I don't think that particular situation is going to work out.)

At dinner on Sunday, I announced that I thought we should consider a different country. Then that night I received an e-mail from an old Resolve friend who highly recommends a local domestic adoption agency that R wants us to consider working with. Over the past several years, there have been several people who have mentioned that particular agency to me, and every one of them has had good things to say. I've searched online for opinions about them, and I honestly have not been able to find one negative thing.

Poor R's head is spinning. And he's wondering what country (or other crazy option) he's going to come home to tomorrow. :-)

All of those may be future options, but for now, I think our next step is Option #1 - trying again with me.

It pretty much comes down to something Mo said in a comment that Blogspot seems to have somehow eaten, but thankfully not before it landed in my inbox: "If you don't know that you've lost pregnancies to nonchromosomal issues while being treated for the thyroid/factor V, then I still think carrying on your own might be your best shot."

Technically, this miscarriage would be the first one we've lost while I was treated for Factor V and thyroid, and the embryo was presumably normal given the CGH results. But given that this one also looks like it was probably ectopic, it could be that this one was just bad luck. So I think it may reasonable to give it at least one more shot.

There's one thing I want to look into first, though - the possibility of endometriosis. When I saw ob last month for my RhoGham shot, it was a very hastily arranged appointment, and his office didn't have a chance to get my chart from the office where I usually see him to the office he was at that day.

In trying to remember my history, he asked about endometriosis. When I told him I haven't had any of the symptoms of it, he said that many women don't have symptoms. Then he proceeded to tell me about a friend of his who asked him to go to the ER with her because she thought she was having appendicitis. It turned out that instead of appendicitis, it was the worst case of endo that ob had ever seen. He said he couldn't understand how she hadn't had pain before then, but she hadn't.

Here's the thing: I've been to the ER twice in the last four years with symptoms of appendicitis. The second time, the ER doc was so sure it was my appendix based on his exam that he had the nurse call down to the OR and tell the on-call surgery team (which had been called in for another case) to stay put because he was going to be sending down an appendectomy. But both times, CT scans showed that my appendix was just fine. So they sent me home, saying "We don't know what it is, but we know it's not an emergency."

And - this will sound incredibly stupid - when I poke around to the right of my belly button, there is pain. I first noticed it a few months before the first "appendicitis" attack. I was gearing up for IVF #1, and I was poking around on my stomach trying to figure out where I was going to do all the shots. I noticed it hurt when I pressed (not particularly hard) in some areas. But then I got sick the next week with a lot of GI symptoms and eventually wound up with a diagnosis of IBS, so I always assumed it was that. Even now, I avoid giving myself shots in the area where I most commonly feel the pain. It tends to sting like crazy when I do them there, so I generally choose my left side for the shots.

So, the really stupid part - it's honestly never occurred to me to mention this to an RE. And all of their questions about endo have been along the lines of "Does it hurt when you have sex?" (no), not "Do you ever feel like you're having appendicitis?", so the subject has just never come up.

I have an appointment in two weeks to discuss this with ob. I've also sent a note to RE's nurse explaining the appointment and asking if RE would want to weigh in on this if ob recommends a laparoscopy, but I haven't heard back yet because nurse was on vacation last week.

I'm not quite sure if this is truly a legitimate concern/possibility, or if I'm just a crazy person grasping at straws.

June 12, 2010

Coming Full Circle

Beta #9 was yesterday, and it was 11 - the same as the first beta in this cycle.

So, yea that it's going down, but boo that it wasn't 4 or less. Beta #10 (hopefully the last one this time around!) will be next Friday.

I've seen the phlebotomists at the lab so often lately that they feel practically like family at this point...

More to come about the post before this one, but first I'm going to try to tackle two papers for school and clean up the house a bit - wish me luck!

June 09, 2010

The Options

I keep going 'round and 'round in my mind, trying to figure out what to do next. Trying to figure out what the heck will get us to the point we actually want to be at - parenthood. But I think I'd have better luck trying to see through walls at this point.

There are a few different options we're mulling, a couple of them with some variations we need to sort through. I tried (but didn't really succeed) being brief in outlining them. Feedback is more than welcome, so feel free to chime in with your thoughts. Things couldn't possibly get more muddled. (I don't think, anyway.)

Option #1 - Another FET with me (i.e. the not particularly hopeful option in my last post)
Pros: We have embryos to work with. I tend to get BFPs with FETs. Insurance will cover the transfer. I have leftover meds from this time around. We're very familiar with the drill. This most recent loss looks like it was ectopic, so maybe it was just bad luck and this could still work.
Cons: The obvious - 6 pregnancies, 0 babies that made it to the 2nd trimester, much less birth. So the odds of success are not in our favor.

Aside from that, there are still costs involved, and the actual FET may be the least of the costs. I want to do intralipids for the next FET, which will involve finding a new doctor, most likely a reproductive immunologist. That requires time, energy, and probably at least $2,000, since RI's don't tend to take insurance. And I think I probably want to do IV antibiotics too - might as well throw the kitchen sink at this if it's our last attempt. Insurance paid for some of it in the past, but there's still travel costs. On top of all that, I have an appointment with ob/gyn at the end of the month to talk about whether I may possibly have endometriosis. More on that in another post.

Option #2 - Gestational surrogacy (i.e. the not particularly realistic option in my last post)
Pros: We have embryos to work with. RE thinks our chances with this approach are "absolutely excellent."
Cons: The cost. We're not independently wealthy. There is no money tree growing in the back yard. If we were, or if there was, we would have turned to this option a couple of years ago.

We've started tentatively talking about this with some of our friends, but no one has come forward to volunteer to carry for us. (A lot of our friends have either had infertility issues themselves or difficult pregnancies with complications that make surrogacy not a viable option for them.) None of our family members are particularly good options, either.

I've done some research into the costs. We're looking at $10k for the testing/transfer, $7k to $10k for legal fees (we would probably have to go independent through an attorney, because an agency would be too expensive), $3k to $5k for travel and miscellaneous expenses like maternity clothing, $20k to $30k for the GC's fee and $20k to $30k for medical insurance for the GC if she doesn't have it.

So we're talking $40k at an absolute minimum (assuming she has insurance) to $85k at the top end. And I would already be out there working a second job and trying to figure out any other way we can come up with the money to do it, except for one thing:

It's a $40k to $85k gamble.

There's no guarantee at the end of it. We would pay the $10k testing/transfer fees up front, as well as at least $5k to $7k of the legal fees, and part of the medical insurance fees if applicable. Then, if there is a BFP, there are small payments made at that point and at the first ultrasound that shows a heartbeat, then the rest of it is paid in monthly installments as the pregnancy continues.

And if something goes wrong at the end and the baby is stillborn or there are complications and the baby dies, we will have paid out all of the money, and have only a dead baby to show for it.

I know that stillbirths are not common, that the odds of us getting to the end of a pregnancy and having complications and having a dead baby are low. But they're not non-existant, and we've been on the wrong side of the odds so many times.

And I think we're at a higher risk than average for those things, because there's a 50/50 chance for each of our embryos to have Bru.gada's Syndrome. There's research that seems to be showing that at least half of all SIDS deaths may really be because of Bru.gada's, so it seems reasonable to think there's also a greater risk of a fatal irregular heart rhythm (which is what Bru.gada's is) in utero, when nothing can be done about it.

R and I are not gamblers to begin with. I really don't think I could lose yet another baby, lose $85k, and still somehow manage to pull myself together again after that. Not to be dramatic, but in total seriousness, that could be just the thing that makes me shatter irrepairably, and I don't think I can risk that.

So unless Ed McMahon shows up on our doorstep with a giant check (is he even still alive?), this option just doesn't seem very realistic.

Option #3 - Adoption (i.e. the not particularly appealing option in my last post)
Pros: Sometimes this works, for some people. If my understanding of recent adoption tax credit changes is correct, we may be eligible to take the credit again, which means this could potentially be the least expensive of all the options.
Cons: We've been badly, badly (did I mention badly?) burned by this option in the past. Badly.

When I say it's "not particularly appealing", I don't mean that I dislike the concept of adoption. In fact, for those of you who haven't been following this blog for the entire time, R and I turned to domestic adoption before we turned to IVF.

And we were lied to (about a birthmom's intention to place), lied to again (about a birthfather situation), and lied to yet again (about drug use). Those were all birthmoms who truly had babies - that doesn't even count all of the scams we encountered but thankfully didn't fall for by women who weren't even pregnant. We spent $30k on those efforts, and we couldn't keep putting ourselves through the heartbreak and feeling being taken advantage of, so we let our homestudy expire and faced the reality of needles and egg retrievals, etc.

So I'm very, very wary about this option. (Okay, yes, "bitter" may be a more accurate word.)

We chose domestic adoption at the time because we wanted to start with a newborn. Now we're more willing to let go of that ideal, and we would be willing to pursue international adoption.

Except, I don't think we're eligible.

R and I both take thyroid meds and anti-depressants, and R has a defibrillator. Granted, he's never had any sort of irregular heart rhythm except the ones induced by medication while he was undergoing an EP study in the cath lab. It's just a kind of insurance policy, in case he was to go into v-fib.

But still, I've made some inquiries, and it seems that other countries frown on the idea of allowing someone to adopt when they have a medical device implanted in their body on the off chance that their heart suddenly goes into a wacky rhythm. And even if he didn't have that, anti-depressant use is highly frowned upon (even if it's past use and not presently being taken), and even common thyroid meds are apparently enough to knock you out of the running.

I've thought about lying - I mentioned these restrictions to our family physician, who said it was ridiculous and has no concerns about us being parents given our health situations, so might be willing to give us a medical clearance - but I tend to be a horrible liar, even when it's a lie of omission. And R, whose character is one of the things I love most about him, vetoed the idea.

So, now that we're at the point we're willing to consider international adoption, it appears to no longer be an option for us. And that one seemed like the closest you can come to a "sure thing", so it's been a bit disheartening.

So yes, we have options. But of the ones that are practical, they don't feel particularly likely to get us to where we want to be - out of this maze, with a baby in our arms.