Tuesday, October 28, 2008

CCRM Day 2

Most CCRM patients have a 1 day workup where they get all of the diagnostic testing and consults within 8 hours (or less!) Because I wanted to get all of my initial testing completed and out of the way in one month (rather than 2 or 3) my 1 day workup turned in to a 2 day workup.

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

Good news from CCRM one day work up (notice: jargon intensive)

I am excited to share that today's appointment went well.

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

Officially a mile high

Just wanted you to know that I'm in Denver, I have my 1/2 day workup scheduled for tomorrow and the rest of it is on Monday.

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

The beginning of healing ...

Have you heard of New Life Ministries?

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

Heading to Denver? ... Thursday.

So after about 10 phone calls and 15 emails, I have coordinated with the CCRM staff. Here's the plan:

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

Heading to Denver ... tomorrow??

Sorry I haven't been keeping you in the loop. I've been waiting to ovulate before I communicated any plans, as I know that my luteal phase is 14 days, so I would have ample time to share the excitement ... well, here I am on CD38 with no signs of ovulation! And this evening AF showed her ugly face. Usually my cycles are 33 days and I ovulate on CD18, but this cycle was apparently anovulatory. (I thought that with this being the cycle following IVF, I was just experiencing delayed ovulation, but no such luck Polly!)

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.

Brenda ... looks like I might get to see you in Colorado!! (I'll email you!)


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

Waiting and hoping

When I was a little girl, I wanted to marry at age 18 and have 7 years with my husband before we had kids, when I would be 25. I wanted to make sure I was young when I had children, and that we had a stable relationship before we brought children into the mix. (Notice how I assumed we "could" bring children into the mix - oh, so naive!) I think I wanted to wait because it's the opposite of how my parents did it ... they weren't in love and we didn't have a "family" in the traditional sense. But I wanted that and I knew the place to start a strong family was a firm foundation in the marriage relationship ... and I knew that at a young age too ... where did I get that?

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

Colorado Bound

You may have noticed that I still haven't provided the "Consult 3 of 3" post ... well, that's because I'm still waiting for it! I will let you know more when I know more!

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.
  1. First month: First CCRM wants you to fly out on CD5-13 of your cycle to complete a 1 day workup
  2. Second month: from home, they have you take Day 3 blood work and you ship it to them for results.
  3. 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.
then when the testing is complete the doctor has enough information to identify the best protocol for your body and your test results - in many cases you can start IVF the next cycle. Well, I don't have that kind of time, so I'm putting myself on the fast track.

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!