Thursday, December 18, 2008
I thought that I'd be glad that the time is over for super ovulating, getting eggs, waiting, getting test results, only to repeat. I'm not.
I thought I'd be hopeful that this time (this time!) it will work. I really could use your hope.
I know that God has a plan and a purpose for my life. Maybe I'm lucky that I know that, maybe I seem arrogant ... I don't mean to. My purpose is to bloom where I am planted and to love those around me with Christ's love ... that's it. I ain't no Billy Graham. I'm just me. When you think about it, it's kind of a nice purpose because it's easily transferrable. (E.g., If my purpose in life were being an amazing tennis star - that would near end when my knees gave out). I know that God has used this season in my life. I know that He is preparing me for things to come. I know that God has molded and changed me only because I have experienced the pain of recurrent pregnancy loss and infertility. This, I know.
I know that in the end (however you define 'the end') God has my best in mind. I know that He is infinite and I am finite and I cannot know His ways. I know that He will turn all things to good for those who love Him. I know that our God is a redemptive God and that He will restore what the locusts have eaten.
However, I have to keep telling myself that He loves me and that He is not punishing me - the area of worth, that is where I struggle. I have to keep telling myself that I'm not a huge disappointment to Him thinking that that is why He's allowed us to lose 4 babies.
I think of this upcoming pregnancy opportunity and I try to make sense of all of these truths, thoughts, and feelings. I want to believe that this will be successful, but I wonder if it will. I've been here before, 4 times ... I know how my story has always ended in the past. I know that now we have the best of the best and that God is in control (and I'm not and the doctors aren't) and that if we don't get successfully pregnant that God still loves me ... but if it doesn't work, I'm not sure how I'll react - I simply cannot imagine it.
It's still just hard to be hopeful in light of repeated past experiences. I believe in God's goodness, but I've experienced a lot of disappointment in Him. That's hard to reconcile.
I think of how I'll be in X weeks - will I be elated and fearful or will I be depressed and hurting? It's like a speech or a really important test that you've anticipated in life ... I know that in X number of days it'll all be over and there's nothing I can do (besides prepare) to change the outcome. It will be over.
I can't imagine this cycle working and I can't imagine it not working. I still just pray that it will work, but am terrified that it won't.
I have no idea what's going on, I have no control over what's going on ... all I can do is surrender.
But that's easier said than done.
Anybody wanna take my place? Do this for me? I'm scared.
Edited to add: I have no idea how you ladies who have been through failed fresh or frozen cycles have gone through this. I admire you.
Wednesday, December 17, 2008
A few weeks later I found a lump - a lump in my breast.
Of course, I started scouring the Internet trying to learn about the connection between fertility medication and breast cancer. I was freaked out, but was trying to maintain my cool.
I emailed my OB/GYN and she agreed to see me right away. She confirmed the lump and sent me for a mammogram and ultrasound. When I got to radiology to schedule the appointments, they scheduled the ultrasound but denied me the mammogram because their radiology department makes it a policy not to do them on women under 35 - due to breast tissue density.
Anybody see the recent Oprah where Christina Applegate discussed her breast cancer and double mastectomy? Yeah, this was all coming down for me right about then.
I had had a fertility cycle where they super ovulated me and they only got 1 lousy egg ... and now because of the need for these treatments - I might have cancer? It was a rough patch, but these days I'm used to a little drama.
I finally got to do the ultrasound and as I'm putting my clothes back on the tech barged in and handed me a green slip with the word "normal" on it ... she said, "see you again when you're 40," and that was it.
Luckily, I have a friend who is a general surgeon (I know, sounds like I hob nob, doesn't it? I don't.) He suggested that when you find a lump you should have three forms of confirmation that things are ok, and that it wasn't alright that the radiology department did not follow through on doctor's orders for the mammogram. He said that if I was still concerned, it would be best to request a referral to a breast surgeon and so I did.
This morning I had the consultation with the breast surgeon and she was so comforting and caring, she was very interested in our entire history and I'll tell you it was quite reassuring that on the questionnaire they make you fill out for a lump consult ... that it doesn't ask you about your fertility medication usage (which would imply that they believe it's a risk factor - a topic for a whole other post!) though it did ask about miscarriages and age of menarche and a whole slew of reproductive questions that kind of surprised me (but I guess not, when you consider that infertiles, or women that choose not to have babies, have a higher risk of reproductive cancers).
Ok, anyhow ... she did another exam, she affirmed what I had found. She reviewed the ultrasound with me and explained why it looked "normal". She affirmed that I took the right steps to being cautious, and she scheduled a follow up in 6-8w just to ease my comfort. She says she sees many women each week who are in the middle of fertility cycles who come in with complaints of breast lumps - she said the meds can temporarily cause them. I was reassured and yet I wasn't. She said that the lump is in a critical breast feeding location and *when* I get to breastfeed, I will need that section of my breast; doing a lumpectomy on that area would remove an entire quadrant of my breast!! She indicated that it should go away on it's own as my breasts change through pregnancy and life.
Before she left she let me know that it would be ok to have the 6-8w follow up if I was pregnant, and she told me how encouraged she is that this will be successful for us - the pregnancy I mean. She really didn't see how it couldn't work if we were testing eggs and since I get pregnant so easily ... little does she know that we've also got the greater part of the Bay Area praying for us!
I left this morning's appointment with a sigh of relief and now I'll make peace with my lump ... until it goes away.
Tuesday, December 16, 2008
Whenever I visit a blog (especially if I’m relatively new to the story) I like to know where we’re at so I’m not surprised with a “well, my surgery went well today” … you see, having a marker in the form of tickers, for where we are in the process, helps me help you support me. So really, it’s all about me.
My husband thought it was a little extreme and then he realized that this is what’s going on in my head, so better to have it out there for him to keep at the forefront of his mind. Helps him to stay in touch with what this must be like for me.
I think it would be “normal” for someone to have a countdown to the activities and even the pregnancy test … but the second trimester ticker? Well, that’s because if we are blessed with a positive pregnancy test – that does little to set the fear at ease. In the past, getting pregnant has been “easy” … so many times we’ve seen the positive pregnancy test and so many times our hearts have been broken just weeks later. If we are blessed with a positive test – there will be celebration, but hopefully we can give a sigh of relief when we’ve made it to the second trimester … and even then, I know I will be anxious about making it to the 50% shot at life mark – 24w and then viability at 28w and then I’ll be concerned that the baby will strangle themselves on the cord. (Delightful pick me up for your Tuesday morning, no?) Man, how I wish my heart wasn’t soured with multiple losses – I really do have a lot of hope for motherhood, it’s just that this whole successful pregnancy thing seems like an unattainable goal.
I wonder how many women who have had easy pregnancies can understand what I’m going through.
And lastly the tickers are there to generate excitement. Mostly, I feel hope and fear, the hope is a choice and the fear is overwhelming. So I’d like to look at these things as exciting upcoming events – as I anticipated Christmas when I was a girl, so I want to anticipate this with the same enthusiasm.
And I loved mapping out the events for you. I know how important it is when we pray specifically for things. I know that so many people can get lost in all the complex procedures and tests that we’ve gone through, so my list makes for a good reference for those who feel lacking in the right words and phrases.
I can’t believe it’s just over three weeks away … we’ve been waiting well, since our last cycle in August for this. Wait, or was it after our first cycle in April. No, I think it was in February of 2008 when we first signed up with this clinic to pursue this technology … nope, it was more like January after our fourth miscarriage. Ok, perhaps it was Sept 07 after our third miscarriage? Or maybe February 07 after our second miscarriage? Ok, it had to have been in Sept 06 after our first miscarriage.
Let’s be honest, ever since I saw that positive pregnancy test in July 06, although I was surprised, shocked, and a little upset about being pregnant, I wanted that baby. My heart has been longing and breaking for a very long time. That ticker countdown started over two and a half years ago and now we’re 3 weeks away - three weeks away from the beginning of a successful pregnancy or three weeks away from heartache and reevaluation – and to be honest, I’m not sure how much more of this I can take, I was ready to get off of this merry-go-round years ago. Lord, I am broken and exhausted - please bless us with a child.
When you see those tickers, don’t think of the few days left remaining on them. Think of the perseverance, faithfulness, fight-against-the-enemy’s-lies, and hope that they really represent.
Monday, December 15, 2008
So now, the dates are solid - 1/5 is baseline ultrasound and further instruction, if those buggers thaw safely we will conceive on 1/7 ... is that a little too much information?
For those that are curious about protocol: today I started Lupron shots, I will continue those until transfer (sometime between 1/10-1/13). I am on .75mg of Dexamethazone until then as well. Starting on Christmas Eve eve (12/23) I start twice weekly IM shots of Delestrogen. I guess I will continue those until 10 weeks of pregnancy (here's hoping). I will begin Progesterone sometime after the 5th of Jan, though I'm not sure the exact date. I will also be on Lovenox or Heparin for this attempt, though I don't know when I will start.
For those that don't understand what all that stuff above said: I'm taking 1-2 shots per day, mostly the easy kind, but some are the kind that hurt like a punk. I will do this until it's time to lock and load the babies. These meds have been known to cause SEVERE grouchiness and have even rocked a few solid marriages, I'm sure. So if I'm even less pleasant than normal ... live with it! (Yes, I started the shots 30 minutes ago, so that behavior is excused - ha!)
We are planning on thawing all three oocytes, fertilizing them, and transferring the two surviving embryos on day 3 (and if all 3 survive, we will transfer only the two derived from CGH normal oocytes), we will freeze the third embie on day 3 ... but don't go tellin' my RE all this info - he still thinks we're considering a day 5 or day 6 transfer - which we aren't.
So that's it, I know my part from here on out ... unless things change. I am excited to finally get my calendar and get off to the races.
I want to provide a little education for those not versed in IVF speak:
1/5: Baseline Ultrasound - I will have an appointment with the doctor where they will evaluate my endometrial lining and make sure it's baby safe, they will make med adjustments if it's not.
1/7: Thaw/fertilization (Day 0): They will thaw all three oocytes (eggs!) and catch a couple of the cutest sperm Berilac can provide. They will hunt those soldiers down, capture them, and FORCE one sperm into one ever-so-eager egg. We will get a report of how many eggs get fertilized and how many embryos we have growing.
1/10: Fertilization report/Embryo Transfer (Day 3): We will get a report on how many embryos are still surviving (hopefully all 3!!) They will get graded with a letter and number score as well as with an overall score (more to come on that later). We hope that we have 2-3 good embryos. If we have 2 or more good ones, we will only transfer 2, and freeze the other. If we have 3 poor ones, we will transfer all 3.
1/11-1/12: Serious bedrest to allow for the nestling embryos to ... well, nestle!
1/17: I obsessively start taking home pregnancy tests. I will refrain from this unless I feel pregnant. The bad news of a negative test is crushing.
1/20: Blood test to determine pregnancy, and if so HCG level.
So if you couldn't tell, there are a lot of hurdles that we have to clear before we can start getting excited about this. Here is my promised list of prayer requests.
1. That my lining will be prepared in time for my 1/5 appointment.
2. That the eggs survive thaw on 1/7.
3. That the sperm fertilize the eggs on 1/7 - that all 3 turn into healthy, chromosomally normal embryos.
4. That the embryos develop and perform cellular division properly.
5. That we have 3 amazingly healthy embryos come 1/10.
6. That once the embryos get transferred they nestle on in to the nutrient rich endometrial lining for a long gestational hibernation of sorts.
7. That we become healthfully and successfully pregnant with normal blood and ultrasound results to help alleviate the already copious amounts of stress and fear we'll be facing.
8. That this struggle will soon be over.
People, you're done reading ... now, get to prayin!
Saturday, December 6, 2008
I mean, for 2 and a half years, I've been coping with this struggle and for the past year and half I've been trying to cope with the ever growing diagnosis of early menopause. And now, now we are being told we are not in early menopause; that there may be explainable reasons for the "proof" we found previously that pointed towards early menopause - who wouldn't be astounded?
So we're laying it all out on the line. We paid for 3 retrievals with our current clinic and instead of making good on the third retrieval (or heading out to CCRM for a closure cycle) we will be attempting pregnancy next month.
I started my protocol on Wednesday, and it's inches away from being confirmed that the actual date of thaw/fertilization (conception!!) will be Wednesday January 7th, we are aiming for a 5 day transfer on January 12th, and we are STOKED!!
So we are trying to ignore the fear of historically poor test results, poor egg retrieval results, and the loss of 4 babies and instead focusing on the hope that God is in control, that we have two "normal" oocytes, and the fact that in the past - we have gotten pregnant easily ... so this time maybe we won't miscarry?
We are choosing the risky and courageous route, instead of the easy and safe route ... it would be so much easier to just keep doing egg retrievals ... when we don't actually attempt to fertilize eggs and transfer embryos, we protect ourselves from the procedure not working or even another loss. I'm so afraid of taking the next step, only to be let down again. But I must face this fear if I want children ... I can only claim God's strength to face this giant.
We are 31 days away from thaw and 36 days away from transfer ... and hopefully, we are 45 days away from a positive pregnancy test that results in a healthy, take home baby come the end of September.
My prayer requests will be coming soon ...
Tuesday, December 2, 2008
Wednesday, November 26, 2008
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
But I am overwhelmingly scared when I think about Christmas. I am fearful of ...
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.
Monday, November 17, 2008
... 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
The way we look at it, we have 5 options:
- Cycle at CCRM in December (I got my LH surge, so I fit into the Dec cycle)
- Cycle at SIRM in December
- Initiate a January FET with SIRM and my 2 normal eggs
- Try naturally this cycle
- 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
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:
- 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
- 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?
Needless to say ... my chlorophyll chugging days are over.
Friday, November 7, 2008
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
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!
**HERE IS WHAT THE DOCTOR SAID THIS MORNING, IN REGARDS TO MY INTERESTING TEST RESULTS**
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:
- 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).
- 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).
- 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).
- This is a miracle from God.
... 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
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
A summary to jog your memory:
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
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 ...
Tuesday, October 28, 2008
So my last post discussed the results from Friday's ultrasound, CD3 bloodwork, and the hysteroscopy ... on Monday we finished the rest of our appointments.
Financial Consultation: Ouch-ma, we just purchased a new Subaru Forester that was cheaper than a single cycle at CCRM.
Semen Analysis: CCRM wanted to make sure Berilac's soldiers are still marching straight, we'll get the results later, but I'm sure they are (ironically) of sperm donor quality! (For all of our friends out there ... does it make you feel uncomfortable to know about Berilac's SPERM??!? ... just thought I'd ask ;-)
Bloodwork: Communicable diseases, nothing to note here ... I'm sure Dr. House would be very interested, but I've cleared these before.
Genetic Counselor: Since we are interested in doing CGH testing on eggs, we are required to meet with a genetic counselor so that they can explain the ramifications of chromosomal testing. We are the first (of about 20,00 or so) patient to EVER ask them to test the eggs and not the embryos ... odd, don't you think? Also, they had us go through an exercise were we had to build this nifty little disease/illness family tree looking thing ... where we listed problems with siblings, cousins, aunts/uncles, parents, grandparents, etc. They were looking for genetic diseases and mental illness. It was hilarious to compare my side of the tree with Berilac's ... the Depression and Bi-Polar Disorder were RAMPANT on mine and his was so ... well, boring! (made us think that a visit to the donor egg nurse might not be too inappropriate - regardless of if we could get this puppy off the ground with our own eggs!! HA! ... if we do egg donor, we won't be passing on these genes ... ok, but only Berilac and I can laugh at this joke. It's too painful coming from one of you. :-P)
Donor Egg Consult: The Donor nurse told us we have an 85% chance at live birth if we do the donor egg program at CCRM. The cost is pretty big. We could do known, agency, or anonymous donorship. It all sounds very interesting and they are definitely a capable party if we have to go that route!
Donor Egg Psych Evaluation: I love an opportunity to be real and transparent ... therapy is my cup of tea. Remember when I was just talking about my family tree? and the sicknesses there? The counselor asked me to describe my family and the first thing that came out of my mouth was "crazy" ... (love you mom! love you dad! tee hee ...) and then I remembered that this was an evaluation to see if we qualified for being recipients ... whoopsy-daisy! (as Tommy Boy would say!) At the end she asked us to contact her when we get closer to identifying donors (if we even have to go that route, she emphasized) so I think we passed her criteria. I was layin' on the charm pretty thick - so we're good.
Needless to say, the appointments went great and we fly home that night. Then, the next day, I had an appointment with an OB/GYN that uses the Creighton Method for treating infertility patients ... I'll tell you about that soon, and about our egg results from our August cycle - got those on Tuesday. And in about 15 minutes I have a consult with my current doc ... so we'll see how that goes.
Sorry for the delay in posting ... missing 4 days of work and home life requires a lot of catching up!!
Friday, October 24, 2008
CD3: which should be below 10, and mine has been as high as 12.7 was the lowest I have ever seen it, coming in at 8.4!! Thank you Lord for disgusting, daily wheatgrass shots! And my E2 was not artificially high to make up for the "lower" FSH, it came in at 46.
We did a baseline ultrasound to see how many resting antral follicles I had, these are important because they are an indication of how many eggs a woman has left, as well, they indicate a general number for how many eggs one can expect to get in a cycle. Any number below 15 reveals a "low" ovarian reserve, and this month I saw the biggest number I've ever seen - at an antral follicle count of 24. 24!!?!? Yowza.
They also did a doppler reading of the blood flow to my uterus to determine if my uterus was getting the blood supply that would be needed to carry a fetus in that little area ... and mine was perfect.
Dr. Schoolcraft did a Hysteroscopy (where they take a camera inside the yahoo) to see if there were any uterine abnormalities, and he confirmed that my womb will someday make a comfy home for a very lucky baby ;-)
Now my favorite part was the medical regroup, where I had 15 minutes to get as much info from the doctor as possible. And really, what I wanted to know was:
1. Are there any explanations as to why I am such a reproductive anomaly?
2. What would he do to change up my protocol for a better response?
And I was pretty excited about his reply.
1. When I say that I am a reproductive anomaly, the strange things are: that I get pregnant very easily, yet I miscarry very easily. I have poor blood hormone levels on certain (IMPORTANT) blood tests that point to a deteriorated ovarian reserve, yet my ovaries look very healthy. My body puts things into full gear and seems to respond well to stimulation medications - growing TONS more follicles that most women could ask for, yet when the retrieval comes around there are only a few eggs retrieved - and we find an abnormal amount of immature eggs in the cohort. Basically it doesn't make sense that a woman with my blood levels would have ovaries that look so "good" and a woman who has ovaries that look so "good" should be able to retrieve many more mature eggs.
When I asked Dr. Schoolcraft about this he surmised (because he was very clear that he does not know what's going on, he said he can only make a guess) that perhaps autoimmune issues are causing these problems. He pointed out that it's been proven that I have thyroid antibodies and ovarian antibodies, he's wondering if antibodies are affecting the whole process. He thought perhaps antibodies are getting in the way of the communication between the FSH drugs and the many available follicles. Perhaps they are blocking the reception of all those drugs we've been pumping in.
He suggested that we start Dexamethazone 10 days prior to starting stims. Dex is a steroid that immobilizes the antibodies. He also wants to have me continue the Dex throughout the cycle ... as he does for all of his patients.
He's also in favor of my using Lovenox as a blood thinner, due to my Compound Hetero MTHFR and it also works to combat antibodies in some way.
2. When we discussed protocol, he suggested the very vanilla antagonist protocol. He said that suppressing with birth control pills would be ok, but not using OCP's would also be ok. He does not want me to use Lupron in the beginning of my cycle because he wants me to use it later. Also on the autoimmune issue front/antibodies problem, he's surmising that maybe I have antibodies against HCG, so when we give me the trigger, the HCG is being absorbed properly into my blood stream, but my body is attacking it such that it's not as effective in maturing the follicles/eggs in the last stage of maturity. So he wants me to trigger with Lupron AND HCG, as Lupron initiates a natural LH surge - which is what matures eggs in their last stage. He wants me to do them both because if one doesn't work, the other will and vice versa. He did say that we would be aggressive with the med dosages, I was doing 750iu/day in my old protocols, but at CCRM their max dosage is 450iu. He also would like to have LH products (like Menopur or Bravelle) introduced to my protocol ... never had that before.
And lastly, I mentioned my good friend Annie and about the fact that when she cycled at CCRM, they pushed her retrieval to when her follicles were measuring 26mm or at least something larger than a typical 18-20mm. Dr. Schoolcraft said that they like to do this when they find women who have many immature eggs, I told him that in my last cycle I had 5 eggs and only 1 was mature and later a second one matured. Dr. Schoolcraft did suggest that perhaps we push retrieval 1 day to allow for full egg maturity.
So that's what he said and honestly, I'm not sure I could imagine it going any better. Weird as it sounds, I had such a great time going through all of these tests. I really feel like God is a part of this entire experience, and I am really looking forward to either getting some healthy eggs out of this or closing the door on using my own eggs. I feel so privileged that I get to go through this process (being able to come to the best clinic in the country). And I don't have a sense of "if this doesn't work, then what?" cause I know what that answer is ... we'll cry, hold each other, lick our wounds, be sad, cry some more, and face the loss of my genetics. Then we'll move on to getting excited about the opportunity of alternative family building solutions. And I think that being here at CCRM represents getting closer to one of those resolutions. If getting my own eggs doesn't work, I don't want to spend YEARS figuring that out, I just want to do this a couple more times and spend the 'saved' years enjoying my family (how ever my family gets defined) rather than waste these precious years losing time. I am taking my life back and it is so exhilarating!
I will let you know on Monday how the second half of the 1 day work up turns out. Stay tuned ...
Thursday, October 23, 2008
I had dinner with Brenda from No Regrets tonight (which was so much fun!!) putting a face to a name is soo cool. AND I got to meet her husband. It took infertility and the best clinic in the country to bring us together, but here we are in mile high!
And Saturday I get to have breakfast with wishing hoping from fortune cookie says don't give up ... though I just noticed her blog was deleted :-(
Who else do I get to meet in person? Amy, BB you guys visiting California from Texas anytime soon? Tara, you comin in from Florida? Pam, you can bet that if you came this far ... you'd better come visit! Tiffany ... we have no excuse. Wendy - you're in the midwest right? California is a great place to visit ... just not while Brenda and I are in CO!
So, not only do I get to see some really cool girls, to boot I get to go to CCRM and meet the infamous Dr. Schoolcraft! And I'm so excited! I've been wanting to come to CCRM for a long time now. And here I am. I'm hopeful that this can happen with this clinic's help, but if this doesn't work, I'm just as excited to move on!
I just love that we are one step closer ...
Wednesday, October 22, 2008
They have an amazing set of services they offer. They are a group of professional therapists who have combined clinical knowledge with biblical wisdom, and they share it with anyone who needs it. Their mission statement is: "To identify and compassionately respond to the needs of those seeking healing and restoration through God's truth. "
My favorite ministry is their daily radio show, where they receive 4-6 phone calls a day allowing callers to ask "how should I handle this emotional difficulty ..." type of questions. Between all 6 therapists, they've written hundreds of books including the most famous book: Boundaries by Henry Cloud and John Townsend, and the ministry is led by Stephen Arterburn. They also offer a 24x7 counseling phone line (1-800-NEW-LIFE), if you find yourself in crisis or in need. Men can attend their Every Man's Battle workshops, for those struggling with sexual integrity. And this past weekend, I stepped out in courage to attend their weekend intensive conference, the New Life Weekend.
I have been wanting to do this conference for some time, but it was the first time it's come to my neck of the woods. I delayed booking my reservation, because I wasn't sure if I would be in Colorado, but when last Wednesday rolled around and I still hadn't ovulated or started AF, I decided that I could register. When I finally did register I was excited all day ... until I layed down in bed that night and it really began to sink in. "Oh dear, I'm going to have to be vulnerable with lots of strangers and I know that I will be challenged beyond my comfort zone ... oh geez, what the heck have I done??!?"
The conference format was unique in that there were about 5 main sessions with a very funny speaker, Stephen Arterburn. And the unique element to the conference was that in between each main seminar-like session, we broke out into small groups led by licensed clinical therapists, who led us in group therapy. In any New Life weekend there are many tracks you can choose from: dealing with anger, weight loss, fear/anxiety, getting unstuck, self worth, marriage, depression/grief, healing from infidelity ... the list goes on. Honestly, I could have registered for 8 different groups, so I decided to instead register for the "general" group ... which, perfect for me, was called "getting unstuck" ... as I feel very 'stuck' in this struggle with trying to have children. I have to tell you that I met the most amazing group of women. And although none of them had problems like mine, we all shared similar issues in grief - whether it was the loss of a relationship, a person, or a dream. We all needed to work on having a voice in our struggles and claiming our hurts, feelings, and opinions. We needed restoration in our sense of self. There was a lot of honesty, a lot of tears, and we even got to experience a little bit of laughter - it was so healing.
The end of the weekend culminated with the closing session where they asked you to speak if you felt led, and so in front of 300+ perfect strangers I shared. Here is what I said:
Before coming this weekend my life was on hold for over two years while my husband and I suffered through 4 consecutive miscarriages which pointed to a diagnosis of premature menopause. I had detached from my friends who couldn't understand and I had focused on trying to "do" everything I could think of to earn my way out of this with God.
This weekend has been painful. It is hard to hear that "God is sufficient" when I think of my inability to give my husband children. And I don't even like reading the phrase: "Embrace the realities of your life" because it forces me to consider that if things continue as they have in the past, I will not get one of Disney's famous fairytale endings.
I leave here today with: Validation - that I am a mother who has lost 4 children and working through that grief and the shattered dream of possibly never having children is something I cannot do alone.
I leave here today with: Encouragement - that God truly has a plan in this struggle and He has not abandoned me.
And a challenge - I leave here knowing that acceptance and surrender is a daily choice; to quote an old wise man (and I jovially pointed to the main speaker Stephen Arterburn ;-) ... pain and adversity are not optional, misery is.
When I finally got to see my husband after the three day conference he told me that I seemed like I was carrying a lighter load ... and I actually laughed and cracked jokes on the way home. I even reached out to friends to get together and connect soon ... and it wasn't out of obligation or because it was the "right" thing to do ... I just felt like I had been missing them, I could feel my heart needing them. It was a blessing. It was the beginning of my healing.
Tuesday, October 21, 2008
Today: CCRM to overnight the CD3 bloodwork kit (I guess b/c I'm in California I don't need to have a face to face with the doctor before they accept my bloodwork! That's why I was planning on flying there tonight - b/c originally I was told that that was needed!) CCRM faxed an order for the bloodwork to my local clinic with orders to draw blood tomorrow (CD3)
Tomorrow: I wait at my house for the FedEx man to bring me my vampire kit! I head down to the clinic ASAP and they work their magic, draw, spin, freeze ... and then they give me my frozen blood ... just like the red otter pops ... only dis.gust.ing!! I race right over to FedEx to overnight it back to CCRM.
Thursday: I fly out to CCRM, bloods arrive at CCRM.
Friday: Blood results come back and I am told whether or not I need a CCCT. If so, I have my hysteroscopy and baseline ultrasound done that day. CCRM orders the Clomid for the cycle.
Saturday: In Colorado, enjoying the beautiful surroundings ... all alone, missing a really dear friends wedding :-(
Sunday: Berilac flies in in the evening, get a good night's rest in preparation for the big day.
Monday: 1 day work up, including regroup and protocol recommendation from the Dr's!
Tuesday: now get this ... S.IRM called and we will be discussing my egg testing results from the August cycle. They have the results and they will share them with me by phone on Tuesday. ... Remember that post where my doctor called me to tell me about my AOA's? Yeah, when a doctor calls you instead of sends you the information in a more casual form, I'm thinking this will be bad news.
Wednesday: take all the info from both clinics and decide next steps.
Monday, October 20, 2008
So I need to be in Colorado for the morning of CD3, which is Wednesday. And I'd like to schedule my 1 day work up on CD5, which is Friday. But it looks like Dr. Schoolcraft has other ladies he's doing the 1 day workup on that day and he doesn't have time for the likes of me! CCRM did say that if another doctor is available and if I'm ok with the choice of doctor, I might be able to switch my doctor and be able to do the 1 day workup on Friday. (I have a wedding to go to on Saturday and I would be very sad if I had to miss it.) If I can't find a worthy and available doctor, then I will have an appointment for a baseline ultrasound on CD5 and will wait until next week to do the 1 day workup with Dr. Schoolcraft.
All this is just too much this evening, I surely wasn't expecting this ... though I am excited and nervous.
I need to look for a flight out tomorrow and I'm pretty sure I'll need to pack a bag ... I can't believe that I'll be a jet setter ... tomorrow! I thought for SURE I would catch my ovulation and have 2 weeks to plan all this. Looks like things don't always go the way you want! Regardless, I'm happy to be going.
I can't wait to tell you all what an amazing, healing weekend I just had ... I was in the middle of composing that post when AF butted in!
Wednesday, October 8, 2008
Anyhoo, moving on ...
When I was 18 I was in love with my high school sweetheart. I thought we were going to get married. And we might actually have gotten married had I not started using serious street drugs and sabotaged the relationship. He was a sweet boy and I loved him dearly (or I thought I did). He dumped me and I spent a week on the couch grieving and getting sober. I started my wait for my husband ...
When I was 20 I was in a relationship that I didn't think was going places. I was trying to get out of the relationship for awhile, but I was young and impressionable and he was 7 years my senior and a tad manipulative. I must have also been insecure for when I was ruffling through his bag (yeah, you think I'm insecure!!) I found an engagement ring ... and.I.freaked!! This guy is a super quality guy, he will definitely make an excellent catch for someone someday, but not for me and not on that day. I broke off that relationship and wondered if I had done the right thing, I hesitantly resumed my wait for Mr. Right ...
When I was 22 I was in love with the son of a preacher man. (Yes, he was literally a pastor's son). He seemed like a great man and a good catch and I thought God was blessing our union and that my waiting was coming to an end. Weeks before the wedding, my fiance and I broke it off and once again I was waiting for my husband ...
When I was 24 I stopped waiting. I married my husband, Berilac. He is drop dead gorgeous (and I'm not just saying that) and the best husband a woman could ask for. He was perfectly provisioned for me. He is accepting, caring, relationally engaged, brilliant, hilarious, handsome, and Godly. Every day I am grateful for the gift that God has given me in my husband. Sure, some days I want to kick him in the shins, but most of the time, I'm in serious awe of what a wonderful gift I got in having him as my husband.
So now I look in front of me, to my wait for a child ... for children. And I pray that after 4 miscarriages, a diagnosis of premature menopause, and a few other not so desirable determinations ... I pray that God will overwhelm me with the blessing of children, like he has with my husband.
I've been thinking about it and it looks like it'll be early next year before we get a chance to try for pregnancy again. It was January 2008 the last time we were pregnant, and we have been doing rounds of egg extractions since then, we will continue to do those until Feb or Mar of 2009. Then we take the eggs we have (and we know we'll at least have 1) and we start fertilizing and transferring those back. So given that I'm looking at another 6 months of waiting ... I've kind of been thinking about all the waiting that I get to do. And it makes it a bit more bearable knowing that the last time I waited for something so important ... I was very, very blessed.
Isaiah 40:31: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Tuesday, October 7, 2008
Berilac and I have decided to pursue the diagnostic testing in Colorado with CCRM. We are also pretty certain we will do an IVF cycle in Colorado. Another cycle where they extract the eggs and test them for chromosomal normalcy. We are not testing embryos, we are testing eggs. When I asked Dr. Schoolcraft if they provide this service he said they could but that NOBODY has ever asked for it before. I thought that was kind of strange. And a little disconcerting ... to be the first at their clinic to do this.
Usually he does a cycle where he'll extract eggs - for women who are single and wanting to preserve their eggs for the future (and not test them) OR they will do a more standard IVF cycle and test the embryos, but he's not retrieved eggs for "future" (read: as quick as humanly possible) use that he has tested prior to fertilizing and freezing.
I'm so special.
I am waiting for my cycle to start and then I will plan my trip. Most of the time the initial testing can take up to three months to complete.
- First month: First CCRM wants you to fly out on CD5-13 of your cycle to complete a 1 day workup
- Second month: from home, they have you take Day 3 blood work and you ship it to them for results.
- Third month: then if it's needed they have other diagnostics - like a lap or a Clomid Challenge Test and you might or might not need to fly back to Colorado for these treatments.
Here's the plan:
Somehow force my body to ovulate this cycle, and SOON so I can get this show on the road.
CD1: My period arrives, book flights, book CCRM appointments.
CD2: Fly to the mile high city!
CD3: 10 minute appt w/Dr. Schoolcraft, provide Day 3 bloodwork
CD4: Co-chill in Denver
CD5: Hopefully* have my 1 day workup
CD6: Fly home with CD10 blood work kit
CD10: (if needed) Have blood work taken locally and ship my creepy blood to CCRM.
CD11: Dr will determine if donor egg/embryo is our best or only option or if not, what our protocol will be.
*The 1 day workup could fall any day between CD5 and CD13 ... the longer it's postponed in my cycle, the longer I have to stay in Colorado! I'd prefer to get home (and back to work) as soon as possible.
The nurse suggested this tactic yet she did warn me that there's a likelihood that we won't be able to squeeze in a cycle by the end of the year if my protocol is longer than a 1 month protocol.
So our current plan, at this moment ;-) is to complete the testing with CCRM to get a better idea of what protocol would work best for me. If they provide a thorough outline for what protocol they would use - I could take that information and have my local clinic (the one where I still have one more "free" extraction round) use the protocol devised by the top clinic (CCRM) in hopes that we get a better outcome than a handful of eggs where most are immature. But we have heard that in order to see the complete picture of what a CCRM protocol looks like, you'd need to actually complete an entire cycle with them (from what I understand they give you the first X weeks of the protocol and tweak it as needed as the cycle progresses) ... so we may do that, just so we can see what protocol develops and find out if it actually works. If it doesn't work, we will know that we sought out the best and it still did not work - and if this is the case, we move on from continuing to try to retrieve my eggs and we pursue "alternative" options.
Watch out Denver - here comes Polly!
Thursday, September 25, 2008
Well I found out yesterday that Dr. Zouves would like me to release all my 100+ medical records to his office (read: require my previous clinics to gather and fax over all 100+ test results to Dr. Zouves) and this would be required for just a 30 minute consult, whose intended purpose is providing me with enough information so that I can decide if I want to become a patient ... so he's requesting all of this before I decide to become his patient. Yeah, I don't think so. Did he not get my overly helpful patient summary along with copies of the 20+ most important test results? What more could this guy want? (haven't I shed enough blood? ... get it? blood tests? shedding blood? ... I crack myself up)
So instead we will do a consult with Dr. Sher at the Sher Institute (SIRM) he's the big cheese at SIRM. We have cycled twice now with the Sher Institute, but it's not been with Dr. Sher himself (he has many doctors working in his clinics across the US)
We respectfully told my current doctor that we are certain we do not want to repeat the protocol from the last two less-than-successful cycles. If all we're risking by changing protocols is 2 eggs ... then heck yeah, let's change protocols.
So my next post about the third consult will be from Dr. Sher not Dr. Zouves! I tried throwing a fourth doctor in there - Dr. Owen Davis from Cornell, I figure if I'm seeing the top 3 doctors in the country might as well see the top four!! What's ganna stop a determined gal like me? ... well, my insurance (crap sack that it is) wouldn't cover the $500 phone conversation. So, yeah, that's a no-go. I think three consults is plenty.
The ol' switcharoo ... one minute you think I'll be telling you what Dr. Zouves says, the next minute you find out I'm telling you what Dr. Sher says.
This little game of musical chairs is too much fun!!