Saturday, October 29, 2011

More bad news today

Has been a busy two weeks since our visit to the Sunshine Clinic. I worked my way down our list of to-dos for them - requested reports for my past mammogram and pap, got additional bloodwork, got an annual exam, sorted out my out-of-town monitoring situation. On top of all that, has been super busy at work, including some travel this week. And somehow I had found my emotional equilibrium again, through some distance, denial, and distraction mostly. But just yesterday I looked up at the calendar and realized how much time had gone by, and how we hadn't heard anything yet. I sent an email last night to our nurse, outlining everything they should've received and asking when we should hear back about results. And I woke up this morning with an uneasy feeling in my stomach, starting to brace myself for getting more news.
  
We barely use our home phone, and the answering machine fills with marketing calls and wrong numbers so we pretty much ignore it. My husband happens to hit the play key this morning, and my heart stops as I hear our nurse relaying our results. (Which I still can't quite figure out, I didn't even think we gave it to them.) I scramble to grab a pen and have my husband replay it. Lots of numbers, lots of normals. Except one.
  
My AMH is less than 0.1. A year ago it was bad at 0.6, now it is practically non-existent.
  
I lose it. I fall to my knees and start sobbing. My husband is trying to figure out what I'm even upset about, but I can't stop crying. Like, wailing, hysterical sobbing. For a full 30 minutes I can't pull myself together. And all day long I keep losing it over and over again.
  
I feel more down and full of despair now than I did with our last pregnancy loss. The apparent sudden and drastic demise of my ovarian reserve leaves me breathless. Our situation is feeling terribly hopeless right now, and that I will never hold a biological child in my arms. I know there are other ways to build our family, but I just can't be comforted by that right now.
  
We have had some dark days in these past 3 years, but right now I am at a low that I haven't seen in a while.
  
It all just hurts so badly. I just can't seem to stop crying. 
  
[*Postscript: Wow, sorry to invite you all to my pity party. How pathetic. What can I say, it was a very very bad day for me, but I'm rebounding, as we always do...] 

Saturday, October 15, 2011

Hope takes a kick to the balls (but regaining footing)

Was an eventful week for the Brightsides, but not all bright unfortunately. Apologies in advance, dear readers, for another long post. Just skim if you want :)
  
Started Monday with the news that for the first time my FSH is sky high = 21.5. I actually shouted it back to the nurse I was so shocked. The last time I had it tested earlier this summer it was 11 (and only 8 the time before that last year), but it was kind of CD 3.5 instead of 3, so Dr. B thought that the timing might've made it start to creep just slightly above normal. So we retested this cycle, this time on CD2. I was prepared for it to be 11 again, a little high, but not twenty-f*ing-one. Like so many times before it, I found myself trapped in a conference room at work after hanging up the phone, my face hot, mind racing, stomach in knots, trying to not completely freak out and make it back to my desk without losing it. Good times.
  
Then Tuesday we met with new RE#3. We liked him and the practice fine, but I just didn't get a strong vibe that it was the right place for us, which was kind of a relief since we were already debating between two others. As the doc was reviewing our history I dropped the new FSH news, and you wouldn't believe how fast he changed his tune to donor eggs. Just like that, his whole approach to us changed. After we left, I turned to Mr. B. and was like, NOW do you see why this is a big deal and I was so upset last night? But new RE#3 did mention that in spite of all the tests we've had done, there were 2 more that he usually recommends for his RPL patients - a blood test for Celiac disease and another one I can't remember. Even though in my heart I knew we would not push forward with him, I was like "sure thing, where's the needle" to get these other tests. I'm starting to feel like a drug addict, playing my doctors off each other to get what I want.
  
And then the big finale was our trip west, which will henceforth be referred to Dr. Sunshine and Clinic Sunshine. (During the IVF orientation they made a reference to blogs and that if you were caught badmouthing the clinic, nurses, etc. they would drop you like a bad habit. I think they meant the community sites, but still, freaked me out a bit, and out of paranoia I've scrubbed specific references from my past posts, and forgive me, deleted a few comments.)
  
(Rest of post is about our "one-day workup" in case want to skip to the end...)
  
Was a long busy day, but I was really impressed with everyone we met with and generally how they run the joint, seems like they totally have their shit together. (And I'm not just saying that for the benefit of any spying eyes!) First we had an IVF orientation session - think conference room with 3 other couples, and a nurse handing you a giant binder and cranking through powerpoint slides. Then we met with Dr. Sunshine. Very personable AND reassuring in his expertise - the best combination. But also pretty concerned about the elevated FSH, reinforcing what I've heard that essentially you're only as good as your highest number (i.e., once it's high, might as well always be high in terms of response, even if fluctuates). He said that we should expect to be "poor responders" and not get a lot of eggs, which given our history and likelihood of abnormalities, does not bode well for us and playing the numbers game. But he's willing to let us take a shot and hope for the best. And that knowledge is power, and at least we know the FSH situation, and can plan our protocol accordingly.
  
Next up, business office paperwork, insurance, $, blah blah. Then Mr. B. providing, ahem, a sample. And then a very thorough ultrasound for me (including doppler and 3D). The tech was awesome, very gentle and totally talked me through everything she was seeing. Good news: size, shape, look of the uterus all awesome, as was bloodflow to the uterus. Bad news: antral follicle count a whopping 4 (2 on each side, though i had a big follicle ready to pop which apparently can hide others), and she worried that my left tube appeared to be filled with fluid. Which obviously sounds not good, but i asked, for IVF at least that doesn't matter much right? To which she answered, true, but the fluid can leak into the uterus and be toxic to the embryo. Awesome.
  
Next up, hysteroscopy with Dr. Sunshine. Which I totally had myself worked up about, after the horrible experience with Dr. B. His nurse was really assuring when I shared my fears, but the fear remained. When I was waiting in the room, I looked around - no video monitor, no heart rate monitor, no giant contraption - things were already looking different. When the doc came in, I seriously think the speculum was only in for about 90 seconds, start to finish. I barely even felt a thing. Afterwards, I asked the nurse why it was so different from before? I guess he used a flexible scope that only had an eye piece attached - he was just checking out the top of my uterus for the embryo transfer and a quick check for fibroids, etc., that's it. Versus the video recording kind which tends to be bigger and rigid, so can't contour to your cervix at all. And he also gave a little shot of something first to numb the cervix. Whatever it was, IT KICKED ASS and was no big deal at all. Before Dr. Sunshine left the room, he asked how the ultrasound went since he hadn't had a chance to look at it yet. I told him about the follicle count, and he was actually just excited that I had more than one follicle. And told me not to worry yet about the tube til he had a chance to look- he was skeptical about a problem with fluid since i've already had an HSG. And then he grabbed my hand in a really nice gesture and told me we'd be talking soon. Yeah, I definitely like him.
  
Next up, a meeting with our primary nurse. Who rocks. Seriously nice, organized, and patient. She went through a really clear checklist of all the tests we were having done that day, as well as our "homework" - some basic tests to get done at home, sending in my detailed results for my last pap and mammogram, and a big kit for doing Day 3 testing at home next cycle and shipping it back to them. (I'll make another post about all the tests - I know I'm always curious to hear what everyone gets done.) She also talked through what our calendar might look like. Which basically kicks off with my next CD1 (around 10/31), then Day 3 testing, then waiting for LH surge, then starting some sort of estrogen priming protocol. Then starting injectables with next CD 1 in late November, monitoring at home for a few days, then travel for retrieval in 2nd week in December. Then hopefully doing genetic testing on Day 5 embryos and freezing, worst case doing testing on Day 2 polar bodies and freezing if we only get a few and worry none will make it to Day 5. Then assuming we have some normal embryos, our transfer would be late January.
  
Next up (yes there was more), blood draws for me and hubs. And lastly, a meeting to review all the consent forms. And then were done, about 7 hours later. Phew.
  
Overall, we left feeling good about the clinic and making the decision to continue with them. I was also a little overwhelmed, worn out, and emotional. The 1-2 punch of my shitty FSH and Antral Follicle Count, on top of my already shitty AMH, really hit me hard. Anything that points to "you waited too long and are running of time" is my scariest place anyway. But it is also really discouraging to head into our first IVF cycle with low expectations for the egg retrieval. Doing IVF at all is a questionable call for us, but my gut in pursuing it was partially based on hope of enough eggs to play the numbers game of getting a healthy one, and dare i dream, a frozen spare for later. That hope has been greatly shaken. And looking at the calendar, knowing we have to make it to early February to know if it's all worth it, is daunting. Especially since this is 4 cycles that we could be trying on our own, another mind-f*ing "what if." 
  
I lost it big time on the way back to the airport, and again this morning. I feel discouraged, sad, scared, and tired. I'm letting myself wallow in this today, feel what needs to be felt, and soon will put back on a brave face. We have made the decision to move forward with this path. I will refocus my energy into being hopeful and positive and giving it everything we got. Tomorrow.

Sunday, October 9, 2011

more shit scheduled -- heading west

AF arrived last Monday, and with it we made a "f-it -- let's go for it" call to schedule the one-day work up [at Clinic Sunshine]. Quick trip - flying out this Thursday night, back Friday night. We have a full schedule on Friday starting at 7:30a - bloodwork, "specimens," and ugh ugh ugh hysteroscopy. Plus various meet & greets and IVF training type stuff.
    
Complicating matters is that we had a really good appointment on Thursday with the local clinic. I really liked the doctor - his patience, the way he explained things. And he also scored points by calling me YOUNG. That was something I had not heard in a long time. (When we had our genetic testing after mc#2, the genetic counselor actually called me an "old bag." He was trying to make me laugh, but still, ouch.) Like [Dr. Sunshine], he also recommended IVF with the genetic testing to see what we might learn about whether problem seems more bun or oven. He knows that Dr. B. (our RPL doc) is not a fan, so was great to have an honest discussion about her concerns and warnings. I also had an f-it moment (I seem to have lots of those lately) and told him we were also talking to [Dr. Sunshine]. And he handled so graciously - apparently him and the other doc are co-presenting a paper this week, they refer patients to each other all the time, etc. He confirmed that their process is similar, but that they seem to have the edge in some aspects of their technique, he has it in others. He said, if we have a say, 60% chance of success with him, then we might have a %61.5 chance with the other guy. 
  
So we left with our heads spinning a bit, and my husband said "Why are we going to [another freakin' state] again?" 
  
Who the hell knows. Is "because we happened to get an appointment there first" a good reason?
  
flip flop. flip flop. 
  
I really don't know what we're doing. Are we really going through with an IVF cycle at all? In [another freakin' state]?? But for some reason my gut is telling me to turn off my brain and just go with the momentum we've started in this direction. The thought has been brewing for a long time, and now just seems like the time to pull the trigger, see what happens, then get going with whatever the hell we do after that. (Assuming HAVE A BABY isn't it.) Part of me wants to go big, do the hardest thing next, while we have some energy for it (and before winter complicates travel between two snowy cities). Even if not really really true, in 10 years will it let me look back and say, "we gave it our all at the BEST place we could."
  
By yesterday the swirl of indecision had settled back down, gut settled on going, blah blah. Then today we were out cheering at the Chicago Marathon, and who is standing 10 feet away from me? Our doc from the local clinic. He was laughing with friends, so genuinely cheering people on. It made me like him even more. Argh.
    
And oh wait - we have ANOTHER new consult on Tuesday. Ha. Wonder what that will do to our resolve. Yeah, starting to think all these appointments may have been a bad idea. Oh wellz.
  
We will get on a plane Thursday. We will see what we think by the time we get back on the plane Friday. And hopefully my uterus will not be so pissed off at being prodded again that it decides to head for the mountains.
  
Okay, sorry for this rambly post from a scrambly brain. I'll update after this week.

Saturday, October 1, 2011

Operation schedule shit

Even before finding out I was pregnant last month, I was starting to feel the itch that we should be trying something new, seeing what else there was to be learned. And then when we lost yet another pregnancy, that resolve was strengthened and, well, I started scheduling shit. Like, everything I could think to schedule, I scheduled. I feel our window closing, age advancing, and like it might be time for whatever hail mary pass there is to throw. I'm tired of being patient, of waiting for our luck to change. My mindset now is, 10 years from now, I don't want to look back with any regrets that we didn't try something.
  
So... the shit I started scheduling weeks ago has started to arrive. And while the act of scheduling this shit felt good and decisive and like I was doing something, the actual taking in of new information and needing to make decisions has started to unravel me a bit. More tightness in my chest, more days where I just want to cry for no reason and every reason all at the same time. 
  
Anyhoo, here's what's happening...
  
The attack has been 2-pronged - REs and Adoption. REs because I wonder if there is still some test out there that might give some clue to our troubles, and I feel like trying IVF might just be something I need to do before giving up on a biological child. Adoption because my confidence in us being to produce a child, any child whether through us or donor egg or what, is pretty shaken right now. And it feels mysterious and unknown and figured I should know what we'd be dealing with.
  
REs first...

  • First up, Dr. B (the RPL specialist). She wanted us to come in after loss #6. I was feeling kind of like "why bother", but again, I was scheduling shit so we went, figuring it can't hurt to hear what she had to say. I was planning to keep close to the vest all the other things I was thinking about, but then had a eff-it moment and just spilled. She thinks IVF is a terrible idea for us, that there is no data to support that it would help our chances of success, that the drugs do terrible things to your system, lining, etc. and any poor results of low fertilization rates, poor embryo quality, "bad eggs" cannot be extracted generally, are only indicative of that cycle, not your overall situation. That being said, she said she would support us whatever we decided to do. As for her advice, she wanted to raise my thyroid meds dosage but I pushed back since already make me jittery, but she agreed that we would test it earlier than her typical 5 weeks and raise it during early pregnancy if needed. (Which I tried to talk to her nurse about last pregnancy but was like dealing with a robot.) She also wants to raise my dosage of prometrium to 200mg, even though there's been no sign of that being our problem. Grasping at straws I think, tweaking little shit. Which is why just trying again with these tiny tweaks is not giving me much confidence. She also suggested we could do another biopsy to check for infection again, and I about leaped across the table at her. Uh uh, I don't think so.

  • Next up, a phone consult with a certain [out of state] clinic. That was this past Monday. I really liked him on the phone, he seemed level-headed, smart, patient. He thought we could benefit from trying IVF with the chromosomal testing, and contrary to Dr.B. but complementary to my own instincts, thinks we could learn something from the process. What is freaking me out is that we could pretty much get on their train starting NOW. I'm expecting my period any second now, at which point we schedule a one-day workup somewhere between CD5-CD15 (which includes a hysteroscopy, my most feared procedure.) After that, it's possible to already start medication the next cycle for a retrieval, then transfer the next. Cue Head Spinning. I of course have already busted out a calendar. Start now, possibly have transfer and beta results before Christmas, to either rest or binge drink. If we delay a month, puts my transfer right when should be traveling to my college roommate's wedding. Nothing will go as planned, I should just stop worrying about it, but I can't help but feel like DECIDE! DECIDE NOW! or you will be so pissed at yourself for waiting!! Part of me says, they've got the best stats, just freaking go for it. Other part of me says, going to another state is a bit extreme for your sure to be stressful first IVF experience. Plus, you still have 3 more appts scheduled...

  • This week, consult with local RE at well-known clinic that a certain skinny E celebrity cycled with last year. Good reputation, good stats, located right next door to my holistic fertility center. It's also where all my IRL support group peeps go. Some with success, others not. Trying to keep an open mind with the appt...

  • Following week, paying a visit to the doctor known to many as Dr. Awesome, namely beloved fellow bloggie Egg who got her twins through him and I know did a shiteload of research before picking him.

  • Lastly in November, seeing an immunologist. I know this stuff is controversial, but again, I want to hear what she has to say and what any new tests might reveal. I'm most skeptical that we're ready to go forward with this stuff, but again, I want to see what's there.

Okay, now for adoption...
  • Attended a 2-hr information webinar with a local agency. Was nice to sit on our couch and dip our toes in this water and start getting informed. It ended and I put down my 6-pages of notes and felt overwhelmed. And my husband said, so we should probably start that paperwork. I looked at him in shock. Gotta love that about him, so blindly decisive. I don't think I'm ready yet, especially since they require a commitment to stop fertility treatments (though I wonder if RPL is the loophole), but good to know that he really is on board with whatever will get us closer to a family. I'm warming to adoption, but the average wait times of 16 months AFTER the 7 months of paperwork/classes/homestudy, etc. is pretty discouraging. Especially with our ages already working against our desirability to birth parents. But, is what it is. Keeping it in the hopper.

  • Also called a private adoption law firm in a neighboring state that a IRL support group friend told me about. (Private adoption is not legal in Illinois, or something like that. I'm still new to this). I called for information and sent away for their 90 minute info DVD which arrived this week. Hoping to watch it this weekend. Figured it was a good starting point to get info from 2 ends of the spectrum, to see how they differ and which way we might want to go.

  
So there's the lowdown, dear bloggies. Sorry to have been away a while, and to bleehhhh it all in one big post. Been a lot to do (namely paperwork for 4 new RE consults, ugh) and even more to think about. All while work is super crazy and I'm about to help start a new spin off company (more on that another time). But I did pull my boss aside yesterday to give the heads up about these appts and the possibility of Colorado trips, and he was super supportive. Which was good to get out of the way, but also made everything pretty real, which I think led to my several crying jags in the last 24 hours.
  
Advice welcome, as always :)   (And missohkay, I'll probably be hitting you up to finally meet for that glass of wine soon!)