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):

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.

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."


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.

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.

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.

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? 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.


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.