Wednesday, November 26, 2008

The kindness of strangers

Yesterday was my semi-annual teeth cleaning appointment with my hygienist at the dentist's office. I take good care of my teeth, so I'm one of those sick-o's that enjoy these kinds of appointments - really it's just one more thing I can control in my out of control life.

I had a new hygienist, she was in her early to mid 40's and totally adorable. She was quirky and witty and very talkative (I guess you have to be when you spend hours on end with people who can't talk back!) among the many things she said during my appointment: (now mind you she doesn't know me from atom and had no idea about our struggles)

You poor thing, you don't have a car? How do you do it? You must be very green. (Yes, let's start by pointing out the sweeping generalizations!)

Are you pregnant? We're going to do some x-rays and we want to make sure you're not pregnant before we do those.

Not pregnant ... now that I can do for you.
Are you looking forward to the holidays? (My answer, with tools in mouth, was "Eh, I gwess;") she then responded with "Well that was positively underwhelming!"
Now, you'd think, based on my play-by-play that she's an irritating character, but she really wasn't. It will get more infertility frightening soon ... but this woman has a way of being endearing somehow.

So you're married? Do you have any kids? No, of course not, who would want to schlep kids around without having a car? What are you going to do, drag them around on a train?

I have three kids. Two are exiting college and the other one is very young. I'm looking forward to the holidays because the older ones will do much of the work and the little one really gets to enjoy the time ... holidays are so much better with kids around to appreciate them.

Now, somehow I was in a wonderful frame of mind yesterday. She whipped out a camera at some point during the appointment and somehow I sported a genuine smile in .23 seconds ... like I said, I enjoy these types of appointments - I always get a good report card with these doctors, so I always leave there proud.

Ok, now you have some unprovoked bleeding with this molar, this means that you've got some sort of mouth/tooth infection that you're fighting, here's a tool to help with that.

Thanks for being such a sweetheart getting your teeth cleaned, you were so pleasant, now I have a couple of follow up questions for you, if you don't mind ... have you had any medical changes since we've seen you last? Like any diagnoses or treatments?

I froze. I have never shared my struggle with my dentist's office, I'm kind of new there and I always have funny conversations with the staff I didn't want to kill their Polly buzz. I could answer this question in many ways ... but did I want to share this delicate part of my life with this near-stranger? (You know I do that way too much) or do I let her enjoy her holidays and not tell her my sad story?

The suspense is killing you, isn't it?

So, of course I opted to ruin her Thanksgiving.

No really, I just wanted to make sure they had the information on my chart because I know hormones affect so much in your body. I responded to her "was there a medical change" question by letting her know that they recently changed my diagnosis from diminished ovarian reserve to potentially PCOS! And how do you think she fielded that?
So do you have high FSH?

Score one for the cougar!! (Sorry any older ladies out there reading this, but she really was a cougar) *Roar* ... and her question prompted the telling of my story. I tried to keep it mellow and uneventful (it's kind of hard though with a story as wild as mine).
So have you been having troubles conceiving?

I told her that we do not have trouble getting pregnant, we have trouble staying pregnant, that we've had some miscarriages. I told her that we have many diagnoses that are not in my charts that she might want to include: Rh Negative, Hashimoto's Hypothyroidism, +AntiOvarian Antibodies, Diminished Ovarian Reserve, and of course Habitual Aborter. When I took a breathe from spewing my laundry list of items, I looked up to a crying woman. She was literally crying.
I am so sorry. That is so painful. I can't believe you've had to endure all of that. It always seems like the ones that deserve to have a family - end up struggling with it. I just can't imagine all the pain you've experienced.

I leaned over and rubbed her arm and said, "it's going to be ok". Yes, this is a major complaint from women who share their stories, that they end up consoling people more than people console them - but it was strangely healing. I think it's because I know God is going to do something good in all of this - someway, someday.

Ok, but score one for the seriously compassionate and loving fertile. She never mentioned anything about her own struggles - who knows if she's ever had any. She just completely blew my socks off in her empathy and heartache ... and I'd known her for 40 minutes. If there are any fertiles out there wondering "how do I respond to a woman who's been down this road?" Well, first off God bless you for reading this and secondly God bless you for even asking the question and pondering it and thirdly ... this is how you do it. With heartache and compassion ... it definitely filled my love bucket. I felt like God reached right out to me and wrapped his arms around my hurting heart.
I had no idea you were dealing with all of this, you seem so cheery and pleasant and sweet.

If my real friends were to read her above comment they would laugh, we all know I'm not considered a "nice" person. It must be a God thing :-) She then proceeded to load up my goody bag with many toothbrushes (in pastel colors, mind you, purposefully ... what? in hopes of eliciting the fertility gods? Who knows!) floss, and instruments.
I look forward to seeing you in 6 months ... hopefully with a big belly.
Yeah, she's very sweet, but I thought that on my way out of the last cleaning. Well, see. God only knows, God only knows ... literally! Ha! (I crack myself up!)

Tuesday, November 18, 2008

Holiday apprehensions - like everybody else

As many infertiles know the holidays are rough. This will be my third Christmas without any of my four babies. That's hard to type, let alone hard to think about.

Let's be honest, I white knuckle it through Thanksgiving and Christmas. I enjoy and look forward to time off work, that's the one thing I've got going for me. I get two weeks off at Christmas and everybody else at the company is also forced to take the time off, so I don't come back to a pile of work - ah Christmas! Ok, and I won't be so crass as to not mention the celebration of the birth of Jesus - hello, my Savior?! I'm very grateful for that (but sadly that too can be skewed in my heart, on a bad day ... because it's a baby's birth and removing the fact that He's God incarnate ... it's a bit taunting to think of another baby's birth.)

Oooh, I know I'm going to get knocked for that one. Moving right along ...

But I am overwhelmingly scared when I think about Christmas. I am fearful of ...

Family Engagements: and feeling like a failure. I know that with every birthday, holiday, anniversary, or seasonal change I experience the loss of not being able to enjoy the time with children that should have been. Because I am so open about my struggle I know that others are aware of how long it's been and I think that they must wonder how it feels to experience this pain ... that still hasn't ended. I think that makes them sad, and I carry that. I feel responsible for a piece of their sadness, like I cannot make it go away. Not only do I feel like a failure to myself and my husband, but I feel like I've let my family down as well. I have been and continue to be very open and honest about our struggle (for better or for worse) just about every person I know (some colleagues excluded) knows about our situation and that makes things very tricky. I don't regret telling people, I know that God has given me a gift of "revealing" being transparent in my struggles, and although the pain is great, the connection (when found) and the hope that someday because of my big mouth someone won't feel alienated or judged because of their infertility and miscarriages - that is what keeps me going, knowing that God is using me. But I won't say it isn't hard.

Quite Moments: You know, the down time between conversations that comes with family when you've spent too much time together. Berilac and I will likely visit a few sets of family this season. Like most families, you can count on most of the conversation being relatively superficial and lighthearted but when the conversationalists have exhausted all of the "interesting" topics, there's silence and an opportunity to 'check on the turkey', 'set the table', 'light a cousin's hair on fire' (whatever the case may be) and that's when I mentally and emotionally step back from the situation and take inventory. I seperate from the person who was just so funny and even transparent (if we'd been talking about the infertility) and I am left with myself. You know, like when you're in bed late at night or early in the morning and it's just you and God. You can't escape your situation, or hope that it's any better than it really is. It's a scary place and somehow these places pop up everywhere at family functions!

Receiving Children Filled Christmas Cards: Ok, let me start off by saying that anyone who reads this, who happen to send us Christmas cards, who happen to have children ... please know that I WANT YOUR CHRISTMAS CARDS, I repeat: I WANT YOUR CHRISTMAS CARDS AND ANNUAL FAMILY LETTERS! The thing that I do not want to be ... is handled. And I do not want to cry in a puddle when I'm having a bad day as a beautiful smiling (Christmas decor laden) family is staring back at me when I go to collect the mail. I love children. I love them. If you didn't already gather, the reason this blog exists, is because I have such a heart's desire for children - so don't misunderstand me. Somedays, when I see a certain card or picture or letter, it doesn't matter if it's aunt betty's step child that I've never met and her hubby, their two kids, and the mutt ... something triggers me and I can't predict it. When I do have those crying bouts the reason behind them is usually because I can't imagine sending a letter of my own (until God-willing we have a child someday) because the card, picture, letter if truthful would really be sad, like heartbreaking ... and I don't want my card to be pinned up with pity, I'd rather it not be there, and that makes me sad. In the past couple of years, some friends have suggested that we send out an update like "Berilac started his MBA this year!" or "We've moved!" which is true ... but my heart would break if I sent those because I would know that I'm lying. The only thing I know is being too honest and too direct - people either love me or hate me for it, but it is what it is. (Ok, so, try as I might ... I'm not convinced that those reading this blog who ordinarily send me family Christmas cards, in years past, will do so this year ... people, please send them! I really do want them!! I really don't want the enemy to win.)

Most of all, this year, I'm a little scared to decorate the Christmas tree: Sounds strange doesn't it? Well it's not. You see, this year Berilac and I decided to memorialize our four beautiful unborn babies with Christmas ornaments from Miscarriage Memories, we found them at the beginning of this year, we had them engraved, they (like our babies) are perfect.

This will be our first official outward symbol of grieving the losses. Of course, I want to memorialize my babies and I want to honor them each year remembering them at Christmas, I'm just sure that it's going to be a painful tree trimming at the Gamwich house this year. It will be sweet, bittersweet.

For me this Christmas is a time to remember what I have lost. I really am hopeful that this battle will come to a happy ending - someway, someday. This year I'm really thinking about my little ones. I'm not really focused on what 'might not ever be,' rather on what ... just isn't.

August 2006
February 2007
September 2007
January 2008

Monday, November 17, 2008

Clarification and progress on the decision ...

So I wanted to clarify, because:

... so many people make this common mistake

... and/or I so commonly miscommunicate it

... and/or it's so weird that it's prime target for miscommunication

Currently, I have two normal EGGS vitrified with SIRM. I do not have any embryos (also known as tot-sicles) on ice, none, not one. When we did two retrievals earlier this year, the intention was to retrieve eggs and test them for chromosomal abnormalities. We made this decision because research indicates that >70% of chromosomally abnormal miscarriages are due to EGG aneploidy, rather than sperm issues. And we've had more than our fair share of miscarriages due to chromosomally abnormal babies :-( Also, we decided that the more common ART solution to recurrent miscarriage is EMBRYO testing, but it's not for us because if a clinic does the testing on the EMBRYO and they learn that a baby is Turner's Syndrome or Down's Syndrome (or any other abnormality for that matter) they don't allow you to transfer back these babies, and although I pray that my babies will be healthy, I also could not be ok with a clinic discarding an embryo that's Turner's or Down's. I have friends that are Turner's and Down's and I can't imagine throwing away that life. So my hubby and I will start with chromosomally NORMAL eggs and fertilize them and we will PRAY that those babies turn out ok, good enough for viability, healthy enough to make it not only to live birth but for many, many years to come.

(And Lisa, that clarification wasn't for you ;-) but it was inspired by you ... and many others. Thanks for being apart of my journey!)

Now, regarding what the heck is happening on the decision front ...

DH and I spent the weekend talking about our next steps and thanking God for all He has done in our life and all He will do in our lives. We are so blessed. Although we have not written anything in stone, right now we are getting closer and closer to attempting a conception in January - and we are excited! That is what it seems like now, the landscape may change if we get bad news back from the AMH tests. Thank you for all of your prayers, this is such an important and delicate decision - it is wonderful having your support as we pray through the decision.

And I have loved hearing your thoughts and opinions ... this is such a strange journey, I'm surprised by many of the decisions I'm faced with.

Lastly, I need to apologize that my posts lately are so informative. I wish I had more time and creativity to post more about my feelings and insights - those posts are always so much more funny and interesting! But we are in the throws of making decisions so I guess you'll be happy to take what you can get?

Friday, November 14, 2008

Ok, so now what?

That's the big question everyone is asking me ...

The way we look at it, we have 5 options:
  1. Cycle at CCRM in December (I got my LH surge, so I fit into the Dec cycle)
  2. Cycle at SIRM in December
  3. Initiate a January FET with SIRM and my 2 normal eggs
  4. Try naturally this cycle
  5. Take a month off and resume efforts in 2009

Ok, let's just quickly scratch off two of those items ...

Trying naturally is out b/c although we would love for this to be our solution, we have two normal eggs on file, why potentially experience another miscarriage when we've got a couple of plump eggs waiting in the wings?

Taking a month off is out for a few reasons ... (although Berilac wouldn't mind this given that he's already busy and yesterday his new company experienced 20% layoffs - thank God he was spared! so now he's going to be even more busy) if we decide to do CCRM in Dec we'll get a tax break because we will have exceeded the 7.5% of our income requirement that's needed to get a medical tax deduction. As well, (now this is going to sound like a "normal, fertile" woman speaking) I'd really like to have a baby in the fall (and not so much in the winter - though I would take whatever I could get) if we troup on to transfer soon, we wouldn't miss the Fall 09 window of opportunity (look at me, being all hopeful that a Fall 09 baby could happen for us!) ... and let's just face it, it was the fact that we waited 5 years into our marriage before we started trying to have a baby that got us into this predicament in the first place! (Any non-infertiles out there reading this ... LADIES, DON'T WAIT TO HAVE BABIES, JUST DON'T DO IT!!!)

So now we are left to decide between cycling at our local SIRM clinic or heading to CCRM. We have been trying to convince our local RE that we want to do a "standard" antagonist protocol and it seemed as if verbally he agreed, so we were gearing up to do that in Dec (given that it's free, we bought it as a part of the fertility preservation package we signed up for in Feb 08) well the other day they sent me the protocol and it's almost exactly like the protocol I did for the two unsuccessful cycles in April and August, a protocol I told him I was certain I would not do again. When I got this jury-rigged protocol I knew that I could not follow through with it and he and I were clearly miscommuncating. So if we are cycling anywhere in Dec, it will be CCRM.

However, then Berilac got it in his head that he might actually believe that we have experienced a miracle from God, and perhaps we do have more time on the biological clock than we thought so rather than assuming we need to do a cycle at CCRM, perhaps we do a fertilization and transfer next?

So a FET protocol takes about 6 weeks. Seemingly, we could skip the CCRM retrieval (and keep that card in our back pocket in case a transfer doesn't work) and head straight into a transfer in January.

So that's where we're at - cycle at CCRM or FET at SIRM.

Out of curiousity ... what you would do?

Monday, November 10, 2008

Another success story ... or so they thought

For the past 2 months I've been imbibing wheatgrass shots in an effort to help lower my FSH levels. You see, if your FSH levels are too high many RE's will not give you the time of day. Well, given that I was engaging one of the best clinics in the country (who have been known to cherry pick their clients) I knew I couldn't risk it ... so I started with the 1 ounce daily shooter about two months ago.

And let me be the first to tell you ... wheatgrass is among the most vile concoctions on Earth!

People shouldn't be eating grass, in liquid form or any other! ... and today I proved that.

Given that my last FSH blood draw was taken on 10/23, it's been awhile since I've had to drink my 1 ounce shot. And considering that today I had to do my AMH redo, I thought a little wheatgrass wouldn't hurt, heck it might help the results, so I thought I'd make up for lost time by taking a 2 ounce shot ... and I'm pretty sure that's where the torture began.

About 20 minutes after drinking the liquid (with nose obviously plugged and followed by an orange wedge chaser) my tummy didn't feel too good. I had left the juice bar and had made it as far as being just outside my fertility clinic building, CCRM shipping kit in hand, ready to get the blood draw for the AMH redo ... when I found myself looking for a bush, you know, in case I needed to hurl. Then I realized that behind those mirrored windows on the fertility clinic building are many desks, likely filled with many workers ... also known as an audience ... so I powered on into the fertility clinic's public restroom.

Can I just stop and take a moment to tell you how unfamiliar I make myself with public water closets? I spend as little time in there as possible. I even develop a case of the vacation constipation (you may have heard Dr. Oz talk about this) in order to avoid public restrooms at any cost. But I digress ...

After I locked myself as safely as I could into the large, handicap stall ... there I was face to face with the disgusting public toilet. Luckily there were no remnants of anyone else's adventures with the porcelain throne. I was holding my hair back and regretting that ever so small shot from 20 minutes prior. I remembered having a nausea experience when I first started my wheatgrass shots when I just stood in front of the toilet for a bit waiting for the it to subside (so this wasn't my first battle of wills with the evil green elixir). In the middle of trying to decide if this episode was worse than the first, right there and then, I quickly lost the battle and was vomiting in an unknown toilet. I'm not sure if it was the excessive saliva that was pouring out of my mouth or the fact that I was holding my own hair back or the constant flow of people going in and out of the bathroom that ruined my day. I think it had to have been the foot traffic because the whole time all I could think was not ... am I going to cause them to yak just by the sounds that I'm making? No, instead I was worried that they would leave the bathroom either:

  1. jealous that it was not them (thinking I was a newly pregnant patient and perhaps at that moment they had just finished an unsuccessful monitoring appointment) ... or
  2. a proud staff member recognizing yet another clinic success story ... because why would anyone be throwing up in a fertility clinic bathroom unless they were dealing with morning sickness from a favorable outcome?
"Ah, chalk one up to another success story" ... or so they thought. "Sorry ma'am seems as if my aim is off, may I wipe that off your shoe?"

Needless to say ... my chlorophyll chugging days are over.

Friday, November 7, 2008

AMH ... take 2

It has been hard to concentrate and hard to sleep. I am so used to disappointment that I'm having a hard time believing that a safe high AMH would be possible for me.

Ever since Wednesday afternoon when CCRM confirmed the AMH of 8.5 in every conversation with Berilac, I've been like ... "can you believe it's 8.5, I can't believe it's 8.5!!" (poor guy has to be sick of it). I am in utter disbelief as I've been dealing with a pretty difficult hand for a few years now, and things just seem to be so dark and painful. But this, this would be a miracle and it would be just too good to be true. And when something is too good to be true, it probably is ...

I ordered my shipping kit from CCRM, the kit should arrive tomorrow morning and the CCRM nurse ordered the blood draw. Yesterday, my local clinic reordered the AMH test for me as well. I am just about all set up for two draws on Monday ... sending blood from the same day to two different labs ... wondering how it's all going to turn out.

I would love for this to be real, to not really have DOR. Seriously, how would that be possible?

The thing Berliac keeps saying is that this diagnosis makes sense in a weird way.

1. My AFC and AMH were inconsistent
2. High FSH could be caused by something other than DOR.
3. When I use stimulation drugs I develop 20 follicles ... I have yet to meet another DOR patient who does that! Usually they develop 2-8.
4. When I was cycling in AZ over Christmas last year, I was being monitored by an "outside" doctor, one who didn't see my blood values and when they looked at my ovarian response to stimulation medications they said "well, this is typical for poly cystic ovarian tendencies like you have" ... and at that point I thought I had DOR and was very confused! (poly cystic means that you have too many eggs, not too few!)
5. Early this year I was tested for poly cystic ovarian tendencies because I exhibited that behavior! Turns out I don't have the typical symptoms, except having a lot of follicles on my ovaries during ultrasounds.

This is all so strange.

If I take the AMH re-do on Monday, I will likely get the CCRM results the following Monday, but I won't get the local lab results (which, by the way, is Quest) until the following Monday or later.

I can't believe I'm letting my mind go there ... thinking that premature menopause might not be my gig.


... yes people, I am still in awe and unfortunately doubt - only time will tell.

Thursday, November 6, 2008

FSH, DOR, POF, AFC, AMH ... the real story

Shame on me. The first rule of good communication is: know your audience!! And here I am spouting off three letter words all over the place! I have done you quite the disservice and I apologize. You must forgive me, I was a little thrown by yesterday's news and if you keep reading you'll learn why ...

A basic lesson in FSH, DOR, AMH, AFC, by Polly Gamwich:

(ok, so this is quite long and I apologize for that ... now you see why I hoped you already knew some of these concepts ... people, get with the program!! Ok, but it is rather entertaining so if you try to bear with it and you might get a laugh out of it!)

FSH: Follicle Stimulating Hormone. This hormone is generated by your brain (specifcally your pituitary gland) to communicate to your ovaries to release an egg. If your ovaries are working correctly the message needs only to be at the level of a whisper, some sweet talk if you will: "Hey there, you sexy little ovary creature you, how's about you get yourself a little worked up and kick out a little eggie for me? what do you say?" ... and for most women ... BOING!!!! the egg jumps on out like it should. Each month on CD3 RE's take the value of your FSH to see how loudly your brain is having to communicate to your ovaries to make them put out. When the doctors tested my levels they learned that my brain is not responding in a little pillow talk like it should, instead my brain is screaming "LISTEN ... YOU STUPID, PATHETIC, NO-GOOD, OVARIES ... GET YOUR ACT TOGETHER, QUIT UNDERACHIEVING AND GET TO DOIN' WHAT YOU'RE SUPPOSED TO BE DOIN' ... SHOW ME THE EGG!!!" in order for my ovary to deliver the goods. When doctors see a body working like this (brain screaming at ovaries) the very valid assumption (and the most common cause for this) is that either the quantity or quality of eggs (or both!) is compromised. There are not many good eggs left so the ovary would rather just not produce an egg, but when prodded with lots and lots of rage ... it gives in.

DOR: Diminished Ovarian Reserve. This is a diagnosis. One that I am very familiar with. When a women gets the news that her brain is debasing her ovaries without regard to their feelings ... the assumption and common cause is DOR. It means that a woman has a low quantity or quality of eggs. At conception a female fetus has a finite number of eggs (I've only got as many eggs as I started out with, likely it's less than the average woman, say good old Jane over here. ). As the years go by, we say good-bye to our eggs; and when they are all gone - they are all gone ... bye-bye! But not only is the quantity at risk, also as the years go by the egg quality drops off - because the eggs have been sitting in our ovaries for 20, 30, 40, 50 years - their quality goes down when the age of the egg goes up (this is why you see more miscarriages in older women). The more years, the worse quality egg. For a young woman the idea is that her eggs are hurting in quantity ... MIA. In older women the idea is that the quality is likely compromised because her eggs are ... well, as old as the hills.
  • DOR in a younger woman: likely egg quantity lacking
  • DOR in an older woman: likely egg quality problem

They think this because usually a young woman diagnosed with DOR has a much greater chance of getting pregnant than an older woman ... it's not much of a chance, but it's much better than that of an older woman (shows you what a lousy pool women who are older with DOR are in ... the stinky pool with all the urine ... poor ladies). So the few good quality eggs have a better chance at making a baby than the few poor quality of eggs in an older woman. Because of my miscarriages and their cause being "chromosomal abnormalities" (poor egg quality) and because of my elevated FSH (poor egg quantity), a few doctors have deemed me DOR and have treated me as such.

POF: Premature Ovarian Failure. This is DOR's crazy,
scary uncle you never wanna meet. This too is a diagnosis. Basically the most advanced stage of DOR is POF. When the brain is trying to beat the ovaries senseless with wicked cruelty and verbal abuse ... and the ovary responds with a stubborn stare and blatant disregard ... you've got POF. Your ovaries have just about given up and you're in peri-menopause if not full blown menopause (and there are clinical requirements for each of these things, I just don't think you care about them right now). I am technically diagnosed with DOR but because I have the anti-ovarian antibodies (AOA) and because my mother went into menopause at age 36 (POF) and because I have DOR ... it is very likely that I will be in POF in the near future. I think it's almost impossible that a woman have AOA and not go into POF.

AMH: Anti-Mullerian Hormone. This is a new hormone blood test that tells you the size of the primordial oocyte pool. In English, it tells you how many total eggs you have left in your body; the hormone reflects the signals sent by all premature eggs in your body and adds them all up to generate a number this is not an indication of how many eggs you have on a given month, it tells you the total number of eggs that are lying in wait. The doctors believe that it is the best indicator to let a woman know how much longer she has until menopause - how many eggs are remaining from the finite amount you were decreed in conceptus. A low number of eggs reflects a low AMH value which in turn reflects impending menopause. The AMH range is from 0.0-10.0 (and for infertile women the practical range is 0.0-6.5) a fertility clinic likes to see a woman with a reading greater than 1.24. And anything below .70 is considered LOW (pretty dismal). In March of this year my level was 1.0 ... I barely cleared dismal. This number was much lower than it should have been for a woman my age. This blood level can be taken at any time during your cycle regardless of the day.

So that is the dark side of my story. And it is a dark, dark circumstance when it comes to getting pregnant successfully and making a real life baby. It's almost entertaining to tell new doctors of my FSH, DOR, AOA, and likely POF ... they almost look scared. These are not easily remedied problems. If the infertility industry had a cure to menopause ... there would be pillars of gold in the CCRM lobby rather than just a beautiful water feature. (Inside joke for my fellow CCRM'ers).

Now here is where the mystery begins ...

AFC: Antral Follicle Count. The other way to figure out how many eggs a woman has left is to do an ultrasound of her bits at the beginning of her cycle. You can see (and count!) how many resting follicles she has for that given month. There is a slight coorelation between the number of antral follicles seen on an ultrasound at the beginning of the month as there are number of eggs retrieved on an IVF cycle. An AFC let's the doctor know about how many eggs they are shooting for that month. My AFC's have usually been good. I had one AFC early on where I had a cyst on one of my ovaries, but the other ovary counted 8 follicles (which could mean likely 16 between the two if I didn't have a cyst on one of them!) The latest AFC I had at CCRM was 24. That is an excellent number, so excellent I can hardly do it justice by saying that it is excellent. A woman with elevated FSH and DOR should see less than 10 follicles and in most cases a handful is common ... but here I am two months in a row: 16 and then 24. These are excellent numbers.

Now for the piece de' resistance!

AMH @ CCRM: So if you remember AMH tells you how many eggs you have left in your body. In March my reading said I had very few eggs left. However, a few weeks ago, at the best lab in the country my reading said that I have many, many, many eggs left ... meaning that what? I'm not going into early menopause? I'm sorry, come again? I've been living my life based on this assumption. I've spent time trying to accept this situation and surrender it to God and move on with my life. I have spent time grieving my losses, but also my potential future children (those that early menopause would likely never let me see). But now they are telling me that on the scale of 0-10 for AMH (which reflects how many eggs you have left) I have a rating of 8.5 ... not a 1, but an 8.5 ... this is a huge discrepency and for this ... I needed to consult the doctor.

Ok, so now you should all be caught up!


Dr. Schoolcraft is not a wordy fellow. So I started the conversation, "So, did you see my AMH results? ... I mean, what's up with that?" (ok, not really, but close!) and he said that he did and that they were GREAT AMH results. Of course I asked him if perhaps there was a lab error or maybe my vial's lablels got switched (you know, like they do in soap operas ;-) and the doctor said that he didn't think so. He believes my AMH is 8.5 ... let me repeat:

Dr. Schoolcraft believes my AMH level is 8.5

If that doesn't make your mouth drop open in shock, I'm not sure what will.

That's some crazy @$$ news people.

Ok, so he said that the AMH of 8.5 is in line with the AFC they did on the ultrasound a few days ago. He said that this is consistent with the response I had to injectibles late last year (little FSH needed to make many, many eggs) ... he said that he thinks the California lab that did my AMH in March ... is wrong. He also thinks that we should continue on with treatments because clearly I have some egg quality issues (high miscarriage rate and low number of normal eggs in my previous IVF cycles) and CGH testing on oocytes will allow us to find and fertilize the good ones. He believes this is great news because he's hopeful we can get lots of eggs (you know like all those eggs I was supposed to get in the last two rounds of IVF ;-) and he thinks we can get a few good ones from many eggs retreived.

My response: "Woah, hang on there fella, are you tellin' me I'm NOT in premature menopause? but rather on the contrary I have a LONG, LONG time before that happens?"

Dr. Schoolcraft: "Well, it doesn't seem to look like quantity is your problem" (read: no early menopause here)

... so yeah, there it is. I'm ... not? in? early? menopause??? I just couldn't believe my ears. Seriously, this changes my whole perspective on things. This is a serious paradigm shift. I had to take a moment to let it soak in ... that there's a possibility that the battle I've been fighting, is not the battle I've been fighting. I need to regroup, reaim and try again. Maybe.

So I asked him if I have lots of eggs in there, how come I didn't have OHSS during my high stim cycles? (basically when a woman who has a lot of eggs gets too high a dose of medications her body can't process them all and shuts down, mine did not do that) the doctor said that the protocol was very unique with three types of suppression but really he can't be sure why, he thinks I should try a much more standard protocol, with a much lower drug dosage.

And in full Schoolcraft style, he didn't have much more to say ... other than "Good luck".

So there are four theories as to what might be going on here:
  1. The AMH value of 1.0 in California was wrong, I am not in early menopause the elevated FSH is from something other than DOR/POF. My AFC and AMH line up and only my FSH is elevated (which could happen for a few rare benign reasons).
  2. The AMH value of 8.5 at CCRM is wrong. Labels were switched, satan is cruel, this nice juicy number is being waved in my face like a steak to a dog. (Yes, someone is supposed to be a dog in this scenario and it's me).
  3. The rising AMH is a signal of cancer (there is research that shows that elevated AMH communicates the presense of certain types of tumors. The reason I'm withholding belief that this is the problem is because the AFC matches the AMH ... if I had 10 AFC, then there would be cause for concern).
  4. This is a miracle from God.
Berilac and I agree ... this is odd to say the least. We need to verify this claim. We want to repeat these tests at both labs and see what happens. Dr. Schoolcraft said that they might come out respectively the same at both places (1.0 in CA, and 8.5 in CO) and that the lab where we got the 1.0 could have used a cheap kit to run the tests ... whereas CCRM runs the expen$ive tests.

... so if we get the same results ... we'll believe the CCRM results. But we'll have to wait and see.

Ok, now seriously, is this hidden drama camera or something? My life is FILLED with drama!! I can't even believe the twists and turns this journey has brought with it. Man alive, I did not see this one coming. Here's hoping and praying that this is the amazing news we've been hoping for ... what a true miracle it would be regardless of how it comes to pass. I'm still skeptical though ... Thomas was doubting ... so it's ok if I do to too, right?

Wednesday, November 5, 2008

Polly = reproductive anomaly

CCRM provided me with my AMH results: 8.5

No ... not .85, not .085, not point eight five, not point zero eight five ... yes, eight point five.


I am so confused.

The CCRM nurse called me and told me she had my results. She told me that my AMH was 8.5 and I said, "do you mean .85 or .085?" and she said "no, we want to see a number above 1.0 and yours was 8.5" ... I asked what the range is and she didn't have that information ... from what I understand it's supposed to be 0-6.5 and I'm 8.5??? So she said I'm PCO.

I then laughed and told her that I'm DOR! Walking into POF. And she said, well your AFC was 24 and that's in line with a high AMH, did our CCRM doctors tell you that you're DOR? ... and I said no.

I have a call with Dr. Schoolcraft at 7AM tomorrow morning to discuss this. The last time I had my AMH drawn (locally) it was 1.0 ... and now it's 8.5?? This number is only supposed to decline and it's supposed to do it slowly. It definitely shouldn't shoot up. It's supposed to be consistent from day to day regardless of which CD you're on.

Now I'm scared that the high number means something bad, like cancer or something. I don't know what else to think. The only thing that makes me think it's not cancer is the high AFC. A high AFC is in line with a high AMH.

I know this doesn't mean much to many non-infertile readers, but it is important and it's very strange.

Saturday, November 1, 2008

The results are in!

We officially have our second Nemo!


A summary to jog your memory:

April Cycle:
20 developing follicles
6 eggs retrieved
5 of the 6 eggs were mature (testable. If they are not mature they can't be tested)
Test results showed: 3 abnormal, 1 normal, 1 inconclusive

August Cycle:
15 developing follicles
5 eggs retrieved
1 of the 5 eggs was mature (testable. If they are not mature they can't be tested) [important to know that a second egg gained maturity hours after retrieval, though they were skeptical of it's quality]
Test results showed: 1 abnormal [the late bloomer], 1 normal egg

Total normal egg count: 2


The CGH results are in from the August cycle. In that cycle we did an extreme protocol, we had 15+ developing follies, and at retrieval we got 5 eggs and only 1 was originally mature. A few hours into recovery, the Embryologist gave us an update that a second egg achieved maturity. So we had 1 normal egg from the April cycle and only 2 testable eggs from the August cycle.

Well from the two eggs, 1 was normal and 1 was abnormal! We had a 50% normalcy rate! (Makes us wonder if the inconclusive from April is potentially normal!)

So now we have 1 more retrieval at our local clinic, and 2 "normal" eggs on ice there. We also have recommendations from two external doctors regarding a new protocol, and we're on the calendar for a CCRM cycle.

Now we have to figure out what to do next ...