Sunday, May 30, 2010

A thank you, some answers, and a big decision

I wanted to start by saying thank you so much to all of you for your support over these past few weeks, and particularly for all your kind comments following our disaster of an IVF cycle.  Given that almost no one in our personal lives is aware of what we've been doing, I honestly don't know what I'd have done these last weeks without all of you to lean on.  I mean that honestly and sincerely--so, thank you.

To answer the question that several of you raised after my last post, mini- or micro-IVF is basically just like regular IVF but with lower stims (for example, one approach might be to use Clomid in place of injectables).  The theory is that older women sometimes produce better quality eggs with less stimulation.  Mini-IVF is also used sometimes with young, high-responders who want a less expensive alternative to regular IVF.

Natural IVF is pretty much just what it sounds like.  Your body makes the same one egg that would be produced regardless, but the difference is that it's retrieved before you ovulate.  Again, the theory is that stimulation may adversely impact quality in some older women.  Women who do natural IVFs usually cycle every month, back-to-back, and bank embryos for a future transfer of more than one at a time. 

Both options are considerably cheaper than regular IVF but, obviously the success rates are also lower because you're retrieving significantly fewer eggs. 

Some of you were also wondering if we'd to go after my local clinic for reimbursement of our expenses, given that their serious f-up (i.e. measuring endometriomas and calling them follicles) was pretty much the only reason we traveled all the way to NY thinking we had 3 (possibly even 4!) follicles.  

I thought about this briefly but the answer is no.

First of all, it really only cost us about $25 per visit to my local doctor, because the insurance covered my ultrasounds and bloodwork (thank God!).  So in terms of what we actually paid for remote monitoring, there would be very little to recoup.  As far as our travel expenses are concerned, we were lucky to have enough hotel points from all my business trips that our 4 nights in New York were free.  We decided to drive rather than fly, so our only real expenses were gas, tolls, parking and food--still a decent chunk of change, but much better than it could have been. 

Second, I actually like the nurse who did the majority of our ultrasounds and I don't want to get her in trouble.  I think what she was doing was measuring anything that even remotely looked like a follicle and figuring my doctor would sort out the difference when he got the pictures.  I actually heard her say once, "I'm not sure if this one is a follicle but we'll go ahead and measure it and see what happens."  The problem, of course, is that the pictures they take are crap quality because they're so small and I assume they probably fax them, which only makes matters worse.

In any event, I'm chalking this up to a learning experience.  I was the one who wanted to do a long distance cycle, so I knew the risks that are inherent in that--miscommunication being a big one.  And I guess I should have paid closer attention myself.  I've seen the difference between a follicle and an endometrioma on the ultrasound screen too, but I just assumed if the nurse was measuring it, it must be a follicle.  And I didn't always get to see what she was measuring. So I guess the lesson here is to insist on seeing for yourself.  I should've known better.

I also don't want to alienate my local doctor, given that I actually still need her to process the bloodwork for my periodic immune testing.  As it stands right now, she is the only RE in my city who treats immune issues.  If I couldn't have my blood draws done there, I'm not sure what I'd do.

Someone also asked if this was actually SIRM's protocol, and the answer is yes, it was, and it was pretty much tailored for me.  We deliberately went with an antagonist protocol to avoid the risk of over-suppression, and the Femara I took was to help keep my endo from flaring.  The estrogen patch was added in at my specific request.  I wanted to try estrogen priming but, again, Dr. T was worried about the impact on my endo.  Normally SIRM uses injectable delestrogen, but we compromised on the patch.

So the bottom line is, I think I had a good protocol that was developed with my specific history in mind, and the lone egg that we retrieved measured 20.5 on trigger day, so I don't have any doubt that it was mature.  I don't blame SIRM in the slightest for this failure.  Unfortunately, the protocol is only as good as the ovaries you have to work with.

Honestly, I think the surgery I had last year ruined my egg supply.  Prior to the laparoscopy, my FSH was  less than 6.  Yes, my E2 was slightly elevated, but I was regularly having cycles with intense early PG symptoms.  That's why I always knew I had an implantation problem.  It was just so clear to me that *something* was happening early on.  We just couldn't seem to make it to a positive beta.

After the surgery, not only did my FSH skyrocket to 17.4, but all those intense, early symptoms pretty much vanished.  This should have been my warning sign.

I think my gut knew but my head didn't want to listen.  I needed to see for myself what my eggs could do.

Now I've seen it.

I would never have thought that only one cycle could give me the closure I needed, but it has.

We are done.

We will not be doing the mini- or natural IVF's I talked about, because I now know in my heart, my mind and my gut that it would be a waste of time and money.

I will not have a biological child of my own.

I will never have a baby with my father's eyes, or my mother's smile, or her beautiful singing voice, or my short, stumpy legs and big ankles (probably a good thing). 

But we haven't given up.

More on that to come.
                 

Sunday, May 16, 2010

A kick in the head

       
I'm sorry it's been so long since my last post.  Unfortunately we don't own a laptop, so our only real Internet access over the last few days in NYC has been my iPhone, which seriously sucks for typing anything more than a few sentences. 

Anyway, so much has happened I've been struggling with how best to communicate it all.  In the end it seemed easiest to just do a day by day synopsis, so here goes (in Reader's Digest version):

Tuesday
In the midst of packing, I get a call from Dr. T.  He wants to reassure me that he's keeping a close eye on my situation even though he's only seeing me by way of my local doctor's ultrasound pics.  I'm actually feeling OK until suddenly I realize the real reason he's calling.

Because things are going really, really badly.

As in, "don't worry, there's still a chance we won't have to cancel you," badly.

Oh, um...OK.

I guess somewhere in my delusional mind I was still thinking of this as just a slowdown--something lots of women experience.  Nothing to worry too much about.  The growth rate will definitely pick up again in a day or two...

How is it possible that I allowed myself to forget the central premise? Never, ever underestimate the extent to which my uterus, ovaries and pretty much every other aspect of my under-achieving reproductive system are totally eff'ed up. 

OK, point taken.  We may be cancelled.  There's nothing to do now but head for NY and hope for the best.

Wednesday
As per Dr. T, we must have at least one follicle at 16 or larger to avoid cancellation.  We sleep late, enjoy a long leisurely lunch, and head for the doctor's office on Wednesday afternoon.     

Sixteen, sixteen, sixteen.  Maybe if I say it over and over again in my head enough times, it will happen?

"Who's been doing your ultrasounds?" the doctor asks as I'm laying on the table.

"Um, the nurse at my old RE's office?"

"Well, you have one at 18."

Eighteen!!  Eighteen!!  Woohoo--we made it!  See, my ovaries aren't so bad.  They may not be great, but at least we got......

"And three endometriomas."

"Huh?"

Yes, that's right folks.  We never had four follicles to begin with, which probably explains the wonky growth pattern.  The nurse was measuring endometriomas and calling them follicles.

Six-hundred to seven-fifty IU of  pure FSH per day, $1000 in Ganirelix, 7 ultrasounds, 13 butt shots, a full week off work, plus an expensive trip to NYC, and my ovaries rolled over, yawned, and produced exactly what they produce every other month.  One egg.

We leave the doctor's office and head straight for Soho where, within twenty minutes, I've purchased a $200 pair of sandals.

Take that, universe.

Thursday
Given my exceptionally poor response, and the fact that we have no insurance to cover repeated attempts, Dr. T believes we may need to modify our approach.  He suggests that we consider switching to a package of natural or mini-IVF cycles, which cost considerably less and--given my track record--seem likely to yield a similar result.  Our choices are as follows:

1) Cancel this cycle completely and try again with a different high-stim protocol.  

Pro:  This was the first time my body has ever been exposed to stims.  It's always possible that a different protocol could yield a better result. 

Con:  We'd be paying full price for a cycle that could--again--yield only one egg.  Dr. T is skeptical that a different high-stim protocol would be any better.  I tend to agree.

2) Cancel this cycle and move immediately to donor eggs. 

Pro:  A much better chance for a take-home baby, in what's likely to be a much shorter period of time.  Could ultimately be cheaper if my own eggs are doomed to fail.

Con:  Expensive and my eggs remain untested.  Could they have worked?  We'll never know.

3) Retrieve our one egg and consider this cycle the first in a package of 3 natural or mini IVFs.  

Pro:  If it works, the cost is much less. Given my beta-3 integrin problem, it seems fair to assume my eggs have never been tried in an environment that would actually allow them to succeed. We know the quantity is low but could the quality still be passable?  This would be our chance to find out.

Con:  The odds are low.  Moving straight to a donor probably makes better financial sense.

After much debate and discussion, we reach a decision.  As ridiculous as it sounds, I don't want to give up on the one lone egg we've worked so hard for.  I can't deny the lure of easy pregnancy with a donor but at the same time, I just can't let go of the idea that my own eggs have never been tested.  We decide to move forward with retrieval and the mini-IVF 3-pack.  I trigger that night.

Saturday 
I wake up from retrieval in a lot more pain than I had after sclerotherapy.  I'm bleeding copiously and the anesthesiologist has to increase my pain meds.  Luckily, the worst of the cramping dies down after an hour or so, and we leave for home.  It's now just a waiting game to see if my one poor egg can make it to freeze.

Sunday
The phone rings and I'm still in bed, exhausted from the day before.  It's the nurse, calling to tell me our lone egg has failed to fertilize.  Even with ICSI.

I've had so little hope from the beginning.  Why does it feel like the universe has knocked me down and now is kicking me in the head for good measure?
       

Monday, May 10, 2010

Lazy-a$$, do-nothing, follicles

   
OK, wtf?
 
As of this morning's ultrasound, we're sitting at 15, 14, 13, and a little something that might possibly be another follicle at 10 (but probably isn't diddly-squat).  This is after 9 full days of stims.

Just to clarify, that means my follicles--the ones that are actually still there that is--have grown a grand total of *1mm in three days*. 

And I might as well have only one ovary at this point because every single one of those lazy-a$$, do-nothing follicles is on the left side. 

Not to be repetitive, but WTF?!???

This morning I had a minor meltdown after my appointment, thinking we were going to lose everything, but  I laid down for a nap (since I'm now officially off work until retrieval) and woke up feeling at least slightly more zen.  I think I was really tired.

First of all, I'm wondering if my right ovary may still be on vacation from the sclerotherapy it had a few months ago.  If I'm remembering correctly, Linda over at I've got bad plumbing experienced something similar.  (Are you still out there, Linda?  We miss you.)   Has anyone else here had sclero for endometriomas?

Secondly, I consulted Dr. Google and found some info suggesting that things can be slowed down considerably--at least for us DOR folks--when you suppress your body's initial big FSH surge (which we did since I came out of the gate too quickly on day 3 with a 12mm dominant follicle).

Of course, there's also the possibility that I'm just the crappiest responder imaginable.

Yeah, that's probably it.  :(

So for now, the plan is to increase the Gonal-F to 750iu a day (gulp) and pray I'm not frying my eggs in the process.  For better or for worse, we're off to NY tomorrow. 

And can I be frivolous for just a minute and say how incredibly difficult it's going to be to be in NYC and not be able to shop?  I mean seriously, this is cruel and unusual punishment. 

Not to mention, every time we go I end up feeling like a total frump.

How is it that so many New Yorkers seem to have perfected that effortlessly chic thing?  I mean it must be something in the water, right?  A secret class you have to take before you can sign the lease on that rent-controlled apartment?

OK, I'm off to obsess over packing.  I think I've officially talked myself into a bad mood again.
  

Sunday, May 9, 2010

My mother

    
Today, instead of focusing on what I don't have, I've decided to focus on what I do. 

I may be biased, but I feel incredibly lucky to have one of the greatest moms on the planet.  I know, in large part, it is the wonderful example my mom set for me that has given me such a strong desire to be a mother myself.

My mom is the kind of mother who worked and went to school and became a vice president in her company and still, somehow cooked a healthy dinner for us every night.

She is the kind of mother who sent me Easter baskets in the mail every year, well into my thirties.

She  is the kind of mother who bought her clothes at garage sales and Goodwill, so she could provide more for her family.  

She is the kind of mother who taught me that there is good in everyone.  Sometimes it's just a matter of finding it.

She is the kind of mother who experienced the pain of infertility and responded by becoming a foster parent to a special needs child, who is now my little brother.

She is the kind of mother who taught me that it really is possible to be happily married for 48 years.

She is the kind of mother who comes for a visit and spends the day weeding my yard while I'm at work.

She is the kind of mother who taught me to do unto others.  And actually practiced what she preached.

She is the kind of mother who spends 6 weeks every year living in a trailer and doing volunteer disaster relief.
 
She is the kind of mother who taught me to never, ever to look down on anyone because of their circumstances, or to judge anyone before you've walked a mile in their shoes.

I am in awe of her.

But as much as it humbles me to think about living up to that example, I know I have to try.
     

Saturday, May 8, 2010

Slow and steady wins the race?

     
...at least I hope so. 

As of yesterday, follicles are at 14, 13, 13 and 10. That means they grew only 3 mm in 3 days and one didn't grow at all, which makes me wonder if we're going to lose it.

Not to mention, I'm feeling a whole lot of nothing going on in my ovaries. No bloating, no twinges, no nothing. I can't decide if that's a good thing or a bad thing, but at the moment I'm leaning more towards bad.

Next ultrasound is Monday morning, so I guess we'll see where we are then. At this rate, it looks like we won't be doing our retrieval until at least Thursday or Friday, which means my brother's trip is cancelled.

In addition, we just had to change our hotel/pet sitter reservations for the 3rd time. 

But it all will be worth it in the end, right?

On a positive note, it looks like my coverage for the IVIG has *finally* come through under the new insurance, which means we'd pay only ~$60 for each $4,000 infusion. 

Plus the weather here is absolutely glorious, so I'm headed out to work in the yard. 

Hope everyone is having a lovely weekend!
 

Wednesday, May 5, 2010

Follicle follies

I don't have much time so this will be a short post, but just wanted to give a quick update.

We had our first post-stim ultrasound on Tuesday morning and there were (drumroll, please)..........4 follicles.

Ugh.

Honestly, this wasn't a big surprise to me since I only had 4 antrals when they did my baseline, but I have to admit I was harboring some fantasies about a different outcome.

"We don't know how it happened Mrs. IL, but you have 20 follicles!!  I guess we were wrong--you're not a poor responder after all!  Congratulations!!!"

Yeah right.

What sucks is this month was the lowest AFC I've ever had.  Just two months ago, the doctor found 7 on one side and 5 on the other, which was a record high for me.  Wtf??

How do you go from 12 follicles to only 4 in 2 months?  I'll never understand why AFCs vary so much from one cycle to the next.  The nurse said not to worry--more would probably pop up--but so far we're still sitting at four.

In all honesty, I'm really not that upset.  I'm 40 years old, with high FSH and I've got anti-ovarian antibodies.  Four is pretty close to what I was expecting at this point.  I guess I was just hoping I'd be wrong.

I think I'd be happy if we had two good ones to send for testing.  That's realistic, right?  Anything more than two would be a bonus.  Anything less than two and I think we'd need to have a serious conversation about the donor option (heck, maybe we should be having that conversation either way--4 isn't exactly a great outcome). 

So the four she measured on Tuesday were at 13, 11, 10 and 7.  That's after 5 days of Femara and 3 of Gonal-F.  Is it just me, or does it seem like things should be moving more quickly than this?  I thought I'd be a fast stimmer since I ovulate really early, but I guess that was wrong. Originally the doctor said he wanted us in NY by this Thursday, but now we won't be leaving till at least Saturday.

I'm starting to get very worried that I won't be done by Thursday the 13th, when my little brother is flying in for a visit.  Obviously if I'm in New York I won't be here to meet him at the airport, which would be very bad since my brother is mentally disabled and can't just get himself to our house to wait.  He's also really, really excited about the trip and I'd feel horrible if I had to cancel or postpone it.  Not to mention, I have no idea what excuse I'd offer up to my parents, who are putting him on the plane at the other end.  As I mentioned earlier, they have no idea we're doing IVF.

If follicles grow about 1.5 mm a day, that should have us in trigger range by Monday, right?  Or am I being overly optimistic?   

What would you do?
 

Sunday, May 2, 2010

Feeling wimpy

I did it.

I officially survived my first day of stims.

Technically, I suppose it would be my third day of stims since I started the Femara on Thursday (that counts, right?) but yesterday was the big day--the day I joined the ranks of human pincushions everywhere, with a grand total of four injections in less than 24 hours.

I know, I know, it could be much, much worse (how do diabetics do it?) but, well...I'm a wimp.  OK, I admit it.

Yes, I've complained mightily about the early morning ultrasounds, I've fretted about weight gain, but it's the shots--oh yes, the shots--that I've been dreading more than anything else.

I don't know why I've always had a thing about needles.  One of my clearest childhood memories is of a trip to the pediatrician's office for vaccinations when I was four.  Not long afterward, I was on the ground in the parking lot with my head between my knees. I think I scared the bejeezus out of my poor mother.

That was the beginning of a long and illustrious history of needle incidents. 

Then there was the time a few years ago when I went to the health center for a fasting blood draw and ended up out cold on the floor with six doctors standing over me.  I think someone must have sounded a building-wide alarm.  After 3 hours of pleading and cajoling, I finally convinced the nurse that I wouldn't die if she unhooked the heart and blood pressure monitors and let me go to work. 

Somehow it feels like cosmic justice that this same woman--the one who risks a week in bed with the flu every year just to avoid a 5 second flu shot--should now be subjected to 4x daily injections with IVF meds.  Clearly someone upstairs has a sense of humor.  

The whole situation has put quite a crimp in my office travel schedule.  That's not to say I didn't (briefly) consider it (c'mon Julize, you're a big girl now--you can handle this).  What's the worst that could happen?  The airport cleaning lady finds me passed out in a bathroom stall with a needle in my hand? The TSA confiscates $3,000 worth of pre-filled syringes as I'm forced to explain in front of 2 co-workers, why my large stash of needles and suspicious looking vials are medically necessary? 

Hmmm, OK, maybe travel isn't such a good idea after all.

Of course, traveling for work would also require me to actually  1) look at a needle, and 2) complete the step of piercing my skin with it.  DH has become quite skilled at both steps.  Me, not so much.

Fortunately, I've made it through thus far without any head-between-the-knees moments, and I think we've developed a pretty good system of shared responsibility.

I lay on the bed and cover my eyes while DH does everything else. :)

And you know what?  It really isn't THAT bad.  I mean, in the world of painful, pain-in-the-ass things there are much worse than Repronex (code name "hellfire") and a few sticks with a Gonal-F pen (endometrial biopsy, anyone?). 

Regardless, there are 5 days of stims on my calendar and I’m really, really hoping I don’t need more.  Five days of this is more than enough for one cycle, thank you very much.

Do you hear that ovaries?  You're officially on notice.

Friday, April 30, 2010

The nasty little what IFs that keep me awake at night

Have you ever found yourself wondering if things in life happen for a reason?

Like the story about the man who misses his flight because he has a flat tire, only to find out later that the plane crashed, killing everyone aboard. 

Was he spared for a reason?  Is there some greater purpose in life he has yet to fulfill? 

It's a subject I've been thinking about a lot lately.  Not about plane crashes, of course, but reasons.

Purposes.

They're thoughts that almost hurt too much to speak out loud, as though somehow just saying the words could make them true.

What if I am infertile because I was not meant to be a mother?


What if this is life's way of telling me I am meant for some other purpose? 

There--I said it.

I am not a particularly religious person (although I was raised as one).

I could list a million different rebuttals to these questions.

There are a million perfectly logical reasons why this line of thinking makes no sense.

Why then, is it so difficult to silence that little voice that comes and whispers in my ear when I least expect it?
    

Sunday, April 25, 2010

So here's the latest...

I realized today that with all my whining about early morning appointments and money and broccoli juice, I really haven't said much about where we are in our cycle, so it probably would be good if I provided an update. 

I think I mentioned the baseline ultrasound I had a week and a half ago on CD16.  Luckily the doctor didn't find any cysts (other than my ever-present endometriomas, of course) and my progesterone levels looked good, so we were cleared to start the Estrogen patch, which I was expecting to do for the next 10 days or so until AF showed up.

Ha, ha--wrong!!  Four days later, AF arrived. 

Yes, that's right folks, if you're doing your math that was a 20 day cycle. For the record, I don't really know what that means but I'm pretty sure it isn't good.

So the doctor had me come in again on Day 3 (last Thursday) for another ultrasound and, to make a long story short, I already have a dominant follicle that's measuring at 12mm.

Now given my history of short cycles, I'm not terribly surprised.  The last few years, I've been ovulating earlier and earlier.  I'm sure the whole problem has something to do with aging, but so far no one has really been able to explain (to my satisfaction, anyway) the exact reason why it happens.

In any case, the result was a fairly abrupt change in plans.  Instead of starting stims as I should've this week, the doctor added Ganirelix to my daily regimen of estrogen patches, and it looks like I'll be taking it from now till retrieval.  The point of the Ganirelix is to degrade the 12mm follicle, so we'll be back to baseline and don't have to worry as much about a dominant one.  I'll go back for another ultrasound this Thursday and hopefully at that point I'll be ready to add the Femara and the Gonal-F.  Tentative target date for retrieval--May 10. 

Of course, Ganirelix would be the one drug my insurance only covers at 50%, so that little change will cost us about $500 but hey, what's another $500 when you've already spent $12,000, right? Ha!

Isn't it odd that insurance would cover IVF meds when it doesn't cover IVF?  I can't quite figure out the logic behind that one but I guess I won't complain since the Gonal-F alone would have cost us $6,000.  With the insurance, we paid only $35.

Anyway, I guess this means we're now doing a modified Agonist/Antagonist Conversion Protocol (A/ACP).  Has anyone else ever tried this approach?  If so, I'd be curious to hear your experiences.  From what I've read, it's a protocol SIRM developed and likes in particular for poor responders (why does this term feel like the medical equivalent of a dunce hat?).   

In other news, I think we've finally decided to go forward with (gulp) a 3-Cycle banking package at our clinic.  As it stands now, we've paid for a single cycle but we have until the day of retrieval to change our minds and write another big check for cycles 2 & 3.  Of course, that won't be the end of the expenses because we'll also have to pay for ICSI x 3 (extra) and CGH (lots extra) but the remaining expenses would be spread out a bit more over time.

The up-side of all this is that I'm feeling a little less stressed about our current cycle.  While it's far from a sure thing, succeeding in three cycles seems much more within the realm of possibility than having to succeed in only one, right? (Can you hear me trying to convince myself?)

The downside is I'm feeling a lot more stressed about money--particularly the amount we'll be losing if we fail.  Not to mention, we most certainly won't be taking any vacations this year (ouch).  Or working on the house (big ouch).  Or buying any new clothes (really, really big ouch).  :(

But with the CGH at least we'll know before shelling out for an FET whether we have anything viable. 

And if it so happens that we're out all that money with nothing to transfer, at least I won't have wasted my time sweating through 3 months of medically-induced menopause.

That's something, right?
    

Wednesday, April 21, 2010

Sabotage

You know those inspirational stories about formerly barren women who miraculously conceive after changing their eating habits? 

Like the woman who drank broccoli juice for breakfast every morning and got pregnant with an FSH of 50?  Or the one who became a vegetarian after 10 years of infertility and spontaneously conceived at age 44?  Or how about the woman who cured her endometriosis by cutting out wheat and dairy?

I am not going to be one of those stories.

Why, you might ask?

Because my diet sucks.

I mean, I probably don't have the worst diet ever consumed by anyone.  I generally avoid fried food.  I don't drink regular soda, and I eat very little red meat.

Now for the bad news.

My dinner tonight was a half bag of baked Tostitos and a tub of guacamole from Whole Foods.  Oh, and a decaf  Diet Coke with a rice milk ice cream bar for dessert. 

And last night?

Some rotisserie chicken and 5 walnut brownies.  And a decaf Diet Coke.

Pardon my French, but WHAT THE EFF AM I DOING?!??????

I suppose it doesn't help matters that I don't cook.  Other than Duncan Heinz brownie mix, that is.

In fact, it's probably a very good thing that I wasn't born in a prior generation or I'm sure I would have died old and alone.  I mean, who would've wanted to marry a woman who doesn't cook, doesn't clean (well, rarely) and can't have babies?   

Luckily for me I have a husband who somehow seems to love me anyway.

Besides, he doesn't cook or clean either, so I guess he can't be too judgmental, right?  And together we really do a lot to keep the house-cleaning and frozen dinner industries in business.

But I digress. 

WHAT THE EFF AM I DOING?!??????

Yes, I really did read the book by the broccoli juice woman and I even found it...dare I say mildly inspirational?

In all honesty, I'm quite sure that diet can and does have an important influence on egg quality.

In fact, I'm so sure of this, I actually spent a four-month period back in early 2008 cutting all wheat, dairy and simple carbohydrates from my diet.  I even gave up Diet Coke (which may not sound like a big deal, but trust me--it is).

Of course, I still didn't get pregnant but it's clear now that that particular failure had nothing to do with my diet. 

So why is it that now, when the stakes are higher than ever ($12,000 higher, to be exact) I can't bring myself to eat in an even moderately healthful way?

I keep telling myself that I will.  I have a refrigerator full of expensive salads, fruit and fresh veggies and yet, somehow the junkiest, unhealthiest crap in the entire house seems to keep finding its way onto my plate. 

Once again, I'm sure there must be something mildly pathological about all this (the more blog posts I write, the more I'm starting to think I belong on a psychiatrist's couch somewhere rather than in an RE's waiting room).

Why am I sabotaging my chances for success?

Maybe it's because my expectations of success are so ridiculously low?  Why make myself miserable eating celery when I'm so sure we'll fail anyway?

Or maybe it's some sort of deep-seated psychological defense mechanism designed to help me avoid a total meltdown if and when this cycle ends badly?  "I'm not completely inadequate as a woman--I only failed because I didn't give it my all!"

Then again, maybe I just have no willpower.

Le sigh. 

So, to make a long story short, I've decided that my story will be a different kind of miracle.

In fact, I've already come up with a title for my book.

"You Too Can Conceive Twins on the Brownie & Guacamole Diet!"

Think I'll make the bestseller list?
   

Monday, April 19, 2010

A week of freak-outs

I'm afraid I've been a bad blogger these last few days.

It's not that there isn't anything going on to write about--it's more that there's been too much going on and not enough hours in the day.  Or maybe my time management skills are just poor?  God knows how I'll ever manage if and when I actually have a baby to take care of.   

In any event, this turned out to be a week of freak-outs for me--some minor, some major. 

Freak-Out #1 - Cycle Postponement:  At the last minute (about a week and a half ago) our nurse had given us a long list of additional tests she wanted us to complete, including a pap smear for me, since I hadn't had one in a while.  Her instructions were clear--I wouldn't be able to start meds as scheduled on the 16th unless all the results were back.

Setting aside my own desire to move forward as quickly as possible, a postponement would wreak havoc with my work schedule.  I'd originally been set to travel in early May, and  rearranging things was a huge pain in the butt.  I'm also pretty sure I pissed some people off by rescheduling a trip that had been on the books for more than 6 months.  Putting off our cycle for another month would have made this all for naught and possibly necessitated the cancellation of yet another trip in June. 

As a result, I spent pretty much all last week trying to make sure we met the nurse's deadline and, in general, stressing out about whether or not that was even possible.

Along the way, I learned a number of things I'm pretty sure I never cared about before last Monday.

For instance, there's no such thing as a "stat" pap smear.  Yes, that's right folks--there are no pap smear emergencies.

Not only are there no pap smear emergencies, it takes a minimum of 3 weeks for pap results to come back from the pathology lab.

Or so my PCP's office tells me.  Call me jaded, but I personally think it was more a matter of no one wanting to go to the extra trouble.

Do you see where this is going?

So, to make a long story short, the pap results didn't come back in time.

Cue major freak-out on my part.

And as it turns out, it didn't matter.  On Thursday the nurse called and said to go ahead and start meds.

So apparently, it wasn't that important to have all the test results back after all.  Go figure.

Freak-Out #2 - First Big Payment Due:  Wrote a check for $12,000.  'Nuff said. 

Freak-Out #3 - Baseline Ultrasound:  The local doctor who diagnosed my immune issues has been nice enough to agree to do my remote monitoring, since staying in Manhattan (at a mere $300/night) for the entire cycle clearly isn't feasible.

But in truth, I've been dreading the whole idea of morning monitoring almost as much as I've been dreading the shots (more on that part in another post).

The major issue is that I'm really, really, not a morning person--as in, I chronically run late for work or almost anywhere else I go in the mornings.  I'm fortunate in that my boss generally turns a blind eye to it (probably because I also stay late) but I really shouldn't be pushing my luck any more than I already do.

With that in mind, my plan was to arrive at my doctor's office no later than 7:30, so I could be out by 8:00, and at my desk by 9:15 or 9:30am (my normal arrival time).  If all went well, I wouldn't even have to tell my boss that I had a doctor's appointment.

Sounds good, right?

Now let's see how this scenario actually played out. 

After sleeping through my alarm, I leave the house at 7:40 (this isn't good--I'm already 40 minutes behind schedule) and promptly hit a major traffic back-up.  Mapquest directions are wrong, resulting in another 10 minutes lost.  I arrive at the doctor's office at 8:20.  The nurse seems surprised to see me--not a good sign (I'm starting to feel a freak-out coming on).  After 30 minutes twiddling my thumbs in the waiting area, I'm finally ushered back and am out the door at 9:20.  By 9:45 I'm at the train station but I'm so late, the parking lot is already full.  Now I have no choice but to race home and try to catch the bus.  Bus arrives at 10:05 and takes me back to the train station, where I wait another 10 minutes for a train.  Arrival time at work?  11:05am.

That worked out well.

Freak-Out #4 - New Parental Arrival Time:  At 11:15am my phone rings.  It's my mother calling to let me know that she and dad are on the road and will be arriving for the weekend around 6:30.   Um, wait--weren't they coming on Friday?  It's only Thursday.  No, my mom is quite sure she told me Thursday.  I'm quite sure she said Friday.  The house is not clean.  Gonal-F still in the fridge.  I won't be home from work until at least 7:00.  A frantic phone call to grumpy DH ensues.  He's off at 3:00 so now he'll be the one to have to clean.  Not good.

Is this cycle over yet?
  

Monday, April 12, 2010

Secrets and Lies

OK, so I realize this is a bit of a cliche in the IF world, but I have to say that coordinating an IVF cycle is a lot of work.

A lot of work as in, I'm having trouble getting my real job done (the one that actually pays me) because I'm having to spend half my time (more than half?) trying to coordinate the last minute details of this cycle.  Sheesh.

Everytime I turn around it seems like there's something else that needs to be done.  This past week has been a whirlwind of covert phone calls with the nurse in my office courtyard, emails back and forth with my clinic's financial coordinator, faxing documents, digging out old test results, and last minute trips to the lab, my local doctor, the pharmacy and the notary.

And we haven't even started with the early morning monitoring visits yet.

Not to mention, my parents are coming to town this weekend, which means the entire house needs to be scoured from top to bottom (lest my poor mother realize what a horrible housekeeper she truly raised) and everything that has anything to do with IVF/infertility, banished to the basement or some other appropriate hiding place.

Yes, it's true, I haven't told my parents about our foray into the land of infertility.  This frustrates my husband to no end, who just can't understand why I would possibly care if anyone knows, be it my parents, his parents or the nice pregnant lady from down the street who asks if we have kids.

He probably would understand it a lot better if I could actually explain it myself.

Why am I more comfortable seeking support from anonymous posters in the blogosphere than from my own mother who knows and loves me and even spent time of her own stuck in the (secondary) infertile lane more than 35 years ago?

I'm sure there's something mildly pathological in the answer but I can't quite put my finger on it.

Is it a fear of displaying any less than perfect aspect of myself to those who know me (yes, even to relatives)?  OK, that's certainly possible.

I'm somewhat ashamed to admit I'm a very competitive person.  Maybe I don't want the nice pregnant lady down the street to know she's beaten me at the happy family game (even if it's only temporarily).

Fear of being pitied?  Maybe.  I doubt that applies to mom though.

Fear of being judged?  OK, maybe that too, although I'm sure my family would be nothing but supportive (at least on the surface).

Oops, why did that parenthetical just jump in there? 

OK, so I don't think my parents would approve of how much money we're spending (throwing away?).  They wouldn't say so outright, but deep down I don't think they would approve.

Although that still doesn't explain my reluctance to discuss the issue with them pre-IVF.

So, in spite of all my navel-gazing, it's pretty clear that I still have no answer.

I guess I'll go hide my syringes.
 

Thursday, April 8, 2010

Bad habits and protocols

I've developed a very bad habit of second-guessing my doctors.

They recommend Course A, and I am suddenly struck with a deep-seated compulsion to research Courses B, C and D.  Passers by shoot me strange looks as I sit in the parking lot of my doctor's office, surfing Google on my iPhone.

Why is A the best? 

Does he really know what he's talking about?

Why did he rule out B, C and D?

And what about E or F??

I've come to wonder what crazed, type-A infertiles like myself did in the world before Google.

This is often followed by a ritual known as, "getting a second opinion."  Or a third.  Or a fourth.

I'm embarrassed to report that in 2 1/2 years, a total of 4 REs (and an Ob-Gyn!) have had the dubious honor of probing my nether regions with the ultrasound wand. 

Of course, we all know where this bad habit has gotten me.  Doctors #1 and 2 advised me repeatedly not to have surgery for my endo.

"Your follicle count is too low already," they warned, punctuating their opinions with appropriately solemn head-shaking. 

But did I listen?  Nooooooooooooooooooo.

Instead I ran home and surfed story after compelling story of women who miraculously conceived (only one month later!)(twins!!) following their laparoscopic surgeries.

And I had a lap.

And was miraculously successful in raising my FSH from 5.6 to 17.2 in only two months!  Who says miracles don't happen?!

So I learned my lesson, right?  No more second guessing.  A Master's in Public Administration does not a medical expert make (duh!).    

Except... 

Doctors #1 and 2 also told me I didn't have immune issues.  No such thing.  No siree, Bob.  Only an unscrupulous quack would even think to recommend such a waste of money as expensive immune testing.

And they were wrong.

And I was right.

How do I know?  Because those expensive and unscrupulous tests (can a test be unscrupulous?) told Doctor #3 my NK levels were some of the highest she'd ever seen.  And all the symptoms that doctors #1 and 2 attributed to endo, or a bad period, or a hysterical-infertile-who-doesn't-know-what-the-heck-she's-talking-about, suddenly disappeared after I began immune treatment. 

And here I sit, surfing Google yet again.

So here's the "protocols" part of tonight's post.

With all the hours upon hours that I've spent researching implantation issues over the last 2 years, I've spent very little time paying attention to anything IVF related.  I'm an IVF newbie in the truest sense of the word and all the endless permutations of different protocols literally make my head spin.

Like the the Micro-Antagonistic LV2A Conversion or the Long Flare GnRH Agonist + Menopur, or the...

OK, so I made those up.

But you know what I mean, right?

So here's my question.  Has anyone else here ever tried a Femara protocol with IVF?  My current doctor (who I really do like and respect) has me on a modified Estrogen priming protocol that starts with the patch on Day 16 of my current cycle (next Thursday) and adds Femara on Day 2 of the next.  Shortly thereafter come a mix of Gonal-F and Menopur every day, and it looks like I eventually add some Ganirelix too, although I'm not sure when?

The problem is I've read several places that Menopur can negatively impact egg quality due to increased LH/androgen production, and Dr. Sher recently responded to a question on his message board saying he doesn't ever recommend Femara with IVF for the same reason.  Not to mention, my LH already seems a bit high (6.1).

So are there any IVF vets out there who'd like to weigh in with their opinions on this?

Should I be concerned or should I (for once!) trust my doctor's expertise?

Edited to say:  Thank you all so much, by the way, for your comments on my last post.  I really wasn't expecting to have much in the way of followers so it's been a lovely surprise.
   

Sunday, April 4, 2010

Negativity

Fair warning for anyone who might actually be reading--this isn't a shiny, happy Easter post.

For whatever reason, I've been feeling really negative lately.  Negative, as in, I'm pretty much 100% convinced that this IVF attempt isn't going to work and I just want to get it over with so we can move on to the next step.

It occurred to me this morning how ridiculous that is.  Let's hurry up and throw away our $17,000 so we can move on to spending another $30,000 on donor eggs.  I don't know when I became so flip about throwing around that kind of money, particularly considering that we're far from rich and have plenty of other things we could be spending our money on.  Like a new kitchen.  Or a deck.  Or, you know...food.

Can you imagine if other aspects of life were like IVF?  

"Well, Mrs. Infertile Lane, we can definitely do the work.  Just write us a check for $17,000 and there's a 15% chance you'll end up with a beautiful, new kitchen...and a mere 85% chance that you'll end up with the same crappy kitchen you've always had."

"Sounds great!  Where do I sign?"

Ha!

So you've probably guessed by now that we decided to move forward and do at least one cycle with my own eggs.

I'm still not sure why given my negativity as stated above but, oh well. 

We found out this week that the 2-cycle package I mentioned earlier isn't available to us after all.  Apparently you only qualify for that package if you're young (i.e. <39) and have more than a snowball's chance in hell of  succeeding (i.e. FSH <15).  Hence our failure to qualify.

So we're back to spending $12,000 + meds for a single cycle, plus another $5,000 on top of that if we do CGH (which I think we will).

Here's my thought process.  If we do a single cycle without CGH I have to go through multiple intralipid/IVIg infusions, 2 months of medically-induced menopause and a trip for 2 to Mexico (to re-do the LIT) before we can even think about transferring whatever we might get.  That means 2-3 months of hellacious night sweats, hot flashes, mood swings, hassle, and possibly pointless expenditures before we can find out that my eggs are shit and get our official BFN (or better yet, a miscarriage!).

If we do CGH, we only have to wait 4 weeks (and pay $5,000, of course) to find out that my eggs are shit.

So the CGH probably still costs a bit more but look at all the hassle and heartache it saves.

Happy Easter!!
 

Monday, March 29, 2010

Decisions, decisions

So we talked to the financial counselor at our clinic this week and got some more information on costs and different IVF packages.

When we first started discussing IVF, I was convinced we should do CGH.  CGH is expensive--it adds about $5,000 to the overall cost (even more if you include the price of ICSI)--but I love the idea because it basically eliminates the whole issue of egg quality if we end up with a BFN.

I'm honestly, so tired of doctors trying to use egg quality as the be-all, end-all excuse for why I can't get pregnant.  It may very well be that my egg quality sucks but that doesn't mean I can't have an immune issue too, or a Beta-3 Integrin issue, or whatever.  If there's one thing I've learned in this process, it's that I should never assume we've identified all my fertility problems.  There always seems to be another one out there lurking in the shadows, ready to jump out and say,

"Ha! You thought you had this whole thing figured out didn't you?! Suckaa!!"

If we were to actually get a CGH-normal embryo and not be successful, then I'd know I still have a problem with implantation and could focus my efforts in that direction. If we get no CGH-normal embryos, then I would know egg quality is an issue and that maybe it's time to think about donor eggs.

The problem, of course, is that paying for CGH would mean only having enough cash for one cycle--and I'm just not comfortable with tapping other sources of funding yet. Not to mention, really--what are the chances I'd be lucky enough to find a normal egg in only one try? At age 40? With an FSH that's possibly as high as 17?

For only $2,000 more than the cost of one CGH cycle, we could cycle twice without it. 

So now I'm thinking maybe we should just get the two cycle package and take our chances.  Twice makes for better odds than once, right?  To have only one chance--to have to succeed in only one cycle--would be so much pressure. 

Of course, the other reason why CGH is attractive is that it dramatically reduces the risk of miscarriage.  And we all know the odds of miscarriage at age 40. With an FSH that's possibly as high as 17? 

Then there's the other part of me that says, for God's sake, why are you putting yourself though this?  You could just do donor eggs now and triple your chances of success.  What's so special about your genetic material?? Why are you even bothering to fiddle around with 15% odds?  15%?!  What a joke!! 

Except donor eggs are really expensive.  And would I always wonder if I could have succeeded with my own?

Bleh, I hate making decisions like this.
 

Monday, March 22, 2010

Starting

Since the day I first registered this blog more than a week ago, I've been agonizing over how to start.

What should my first post be about?

Do I just jump in and start talking?

Do I introduce myself?

I've even looked at other people's blogs and gone back to their first posts (how lame is that?). 

It's odd to me that I'm spending so much time agonizing over something very few people are likely to see.  Other than DH, I haven't told anyone I'm starting a blog, and I probably won't.  My family definitely doesn't know and only a very few friends have any idea that we've even been trying to conceive.

So why do it?

I'm not entirely sure myself.

I guess after spending so much time obsessively searching and reading other blogs, desperately trying to find someone who's had the same mix of symptoms, or diagnosis, or at least a similar experience, there's a part of me that just really feels the need to tell my own story.

Maybe someone else will find it helpful?

Somehow writing about it makes me feel ever so slightly better.  Or at least I think it might--I guess that remains to be seen.

There.  I've started.