Sunday, March 31, 2013

Finally, At Peace

Thanks so much everyone for the kind words of support on my last post. It felt so great to have so much positive reassurance. I will admit, I can send myself into a tailspin over just the smallest decisions, so a decision that cost as much as this one, really was not good for my poor delicate heart.

However, I've felt a kind of peace these last few days that I've not had in a long time. I don't know if this IVF cycle will work. However, I also can't say that going to CCRM would work either. I finally feel like I'm able to lay it all on the line and handing my trust over to my doctor and his staff, and it's been a great weight off of my shoulders. So I know that for now, for this particular cycle, this is the very best decision for both of us.

A few of you asked about Trevor and how he felt and if he was supportive. The man doesn't have a unsupportive bone in his body. He's been a rock star about all things fertility. He's agreed with me, shared his thoughts and talked out ever scenario, every step of the way. While he did like CCRM and their stats, he also does like the idea of doing at least 1 round, in Chicago. Logistically it's easier and I believe as I learn more about this process, and how the hormones will affect my body, easier, is probably better. If I become an IVF pro, maybe more complicated will make sense at that point.

I do have one exciting (to me) update. I spoke with my doctor in Chicago about my protocol. While he plans to do the antagonist protocol with fairly high dosages of meds, CCRM was planning on doing an aggressive EPP protocol with testosterone. My doctor in Chicago has agreed to let me add the testosterone to my protocol with him. Small battle one. I've heard really good things and he did say that it has shown a small improvement and is something they do when they are pulling out all the stops. (Um, like me? Lets remember, I have some pretty bottom of the barrel AMH numbers) He said it would cost me an additional $700 though.

I tried to not choke on that, not because of the cost, but because $700 in the grand scheme of things, is kinda peanuts.

Well, here we go...I've officially started my journey into IVF. I'm 2 days into my birth control pills. I will start my injections on April 23rd, with an estimated retrieval on May 4th.

Here's to hopefully keeping the hormones in check and not turning into a raging bitch over the next 2 months!!

This was technically my sisters last hurrah, as it was her bachelorette party, but I'd also like to think of it as mine as well. Here's a picture from our great weekend at Wrightsville Beach!!

Anyone ever heard of a "pickle back"? Well, I hadn't either. This was me about to experience on for the first time. VERY strange, yet, not as bad as I was expecting. It's a shot of whiskey followed quickly by a shot of pickle juice.

Thursday, March 28, 2013

Kindness Does Matter

To me. It matters a lot.

Many of you that have followed me for a while will remember my struggles with my first jackass (ahem...RE). In the end of that "relationship" I was nearly broken feeling completely abandoned and even berated. Since then, I've been bouncing from consultation to consultation, trying to find the right doctor to treat DOR and unfortunately none of those options have been local.

So back in early February we had decided on Chicago. Then after MUCH research, many opinions of other gals on threads and blogs, I had my consult with CCRM. That went really well too. While most women go to CCRM as their last choice, we decided, maybe it should just be our first choice. The only problem is, the first round of IVF can tell you so much. I haven't had a first round yet. I've had 2 IUI's with a fine response, at least for the low dose of meds I was on. Our question is we spend the money on CCRM right off the bat? We'd be months away from getting pregnant, IF it even works. I had been already to start IVF with Chicago in March.

So much has happened in the last month since my laporoscopy. Well, I can tell you what hasn't period has NOT happened. I went in for blood work and another ultrasound yesterday and my beta is finally down to 5. The ultrasound showed my lining being very thin and Chicago told me I was ready to start bcps TOMORROW. Potential retrieval date of May 4th (ish).

Whoa. Step back. Here I was convinced I was going to just go out to Denver soon, go through all the rounds of testing, then figure out the whole schedule of events from there...but here's Chicago saying we're ready to

This was music to my ears. I have to say, I was intrigued. Then my nurse, who mind you, has been MY nurse for 2 months. She's checked in on me, called me, emailed me, sat by the phone and even waited for my call one day, seriously, she answered on the first ring...they never actually ANSWER the phone.  Then she told me, we're going to do this. We're going to take good care of you. She said, you were born the same year as my daughter, I'm going to take care of you as if you were.

Guess what, peeps. That was what I've needed to hear. From someone. Anyone. I broke and I literally wanted to crawl through the phone and into her arms. So yes. I'm going to change my mind AGAIN, cause well, it's what I do, and we're getting started with IVF. I start my pills tomorrow.

I'm going to spend my weekend on the beach with a bunch of girls for my sisters bachelorette party and just relax and breathe a little.

I'm excited and I'm nervous. I know that my protocol is the antagonist. I've heard a lot on either side. Some people say that's not right for DOR or that you shouldn't be on bcps, but I'm going to trust my doctor and that he knows what he's doing.

Lastly, I've been loving all the support from all of you gals. You are all awesome. Some that have been with me for a while and all of the newbies. I love all of your comments. Seriously. Thank you. I could never do this without you all.


Tuesday, March 26, 2013

Numb. Over this Cycle. Blah.

Do you ever feel like you're right on the cusp of starting something really big, but you just can't get there. Literally, the starting line is right in front of you and it's like something is pulling you back.

This past month, I've felt "numb". I can't explain it. Technically, I had some sort of pregnancy this cycle, even though I never saw a BFP, my blood test said it was there. I haven't cried. Not once. A few months ago I couldn't make it through the day without bursting into tears. Whether it be in the car, sitting at my desk at work, at home...

Now nothing. It's like I don't feel anything. I'm on cycle day f'ing 54. FIFTY FOUR! They stopped doing betas once my numbers went under 10. So I have no idea where I am. They said I would start a period this week and I have absolutely no signs that is the case. It's frustrating.

I just want to move on. To something. Anything.

CCRM had asked me if my cycles were regular I could go ahead and schedule my one day work up., at present time, they are not. So I'm still sitting here...waiting.

My last actual fertility treatment was in November when I did IUI #2. That feels like a million years ago. In diminished ovarian reserve time, it probably is. I've been told I'm in the 4th quarter, with absolutely no time outs, that I need to get moving.

Yet, here I sit. Still.

Thursday, March 21, 2013

A Few Deep Breaths...

After talking ourselves blue in the face, countless lists of pros and cons and sleepless nights, we have decided to go with CCRM. It's more expensive. It's the place where many people go as a last resort. Are we really ready to go here right off the bat?

The answer is yes. The chances of success are 20%, but that's twice as much as our chances in Chicago. We don't want to do a round in Chicago, only to have a failure and regret not going with CCRM from the beginning.

This was a very hard decision for us. Unlike many women going to CCRM, we don't have an IVF to compare to. We don't know how I'll truly respond to stims. We only know that I responded "okay" to low doses for my two IUI's last fall, and can only assume I will be a poor responder due to my <.16 AMH level. There is just so much of an unknown for me.

I've gone to countless websites and driven myself mad over the positive AND negative comments for CCRM. At the end of the day there are going to be both, I know this and need to embrace the decision we've made and know that no matter what happens, it's the best and the right one for us.

We do know that we can only do a maximum of two round there. The cost is so high, that we can't do IVF after IVF just to have failure after failure and then turn to donor eggs. We will have to draw the line somewhere and for us, that's at two. Obviously, this can be revisited if I have some crazy successful rounds that just for some reason don't result in a pregnancy, but the odds of that are, lets be honest, not really good. But hey, throwing that out there as a disclaimer regardless.

On to the when. That's a fucking sore spot. I'm on cycle day 49. My beta on Monday was 9.25. So to summarize:

March 12 - 10.6
March 14 - 10.2
March 18 - 9.25

What does this tell me? My body is basically giving me the middle finger on moving this cycle along so I can get started. Seriously, in no rush whatsoever. I was told I don't need to repeat betas again since they are in fact coming down and that I should expect a period next week. At the rate these are dropping I'm going to call bullshit on that and say a period is at least two weeks out.

Oddly enough I have had some ovary type pinching pains on one side today and my temp dropped a bit. I used a Wondfo OPK and the test line was darker than the control line but the CBE OPK was negative. I was given the old "tsk tsk" on Baby Center to just stop monitoring and sit this out, ovulating or not.

So big sigh. Here I sit.

Monday, March 18, 2013

A Constant State of Confusion

My call with CCRM was Friday afternoon. For some reason, every time I've come online to write my post, I've hesitated. I haven't known what to say or how to say it. I'm at odds over so many variables, that I can't even decide if the call was helpful or just added more pressure on decisions that need to be made. Well, I've put it off long enough, so I'm just going to lay it all out there, even though none of these decisions have been resolved.

Dr. Gustofson was great. So kind and personable. He even knows Dr. Rapisarda in Chicago and said he is very good and very smart. He did not say anything regarding the protocol in Chicago, whether it was right or wrong. I think I just wanted to much for my chances to be so much higher at CCRM because of their DOR statistics, but at the end of the day, while they are higher, it's not that much higher. Dr. G is giving me maybe 20% chance of success, while Dr. R is giving me maybe 10%.

Next steps would be:

FSH/LH/E2/AMH - These would be done locally on cycle day 3, frozen, and sent to their lab.

Testing in Denver on cycle day 5-13 would be:

TSH, Free T4, Prolactin, CBC, Vitamin D


Chromosome Analysis (me only)

Fragile X

Blood Type and screen for Rubella and Chicken Pox

Baseline Ultrasound/3D - access the number of resting follicles and blood flow to the uterus

Office Hysteroscopy - This one is up in the air. If I can provide the photos from my Hysteroscopy last month, he'd be willing to nix this.

Sperm Analysis, Anti-Sperm Antibodies and culture and Sperm Chromatin Structure Assay for Trevor.

I don't know the exact cost yet for what they've ordered for me, but I'm thinking it's in the neighborhood of around $4k.

Next I would start an aggressive stimulation cycle without BCPS that would be EPP or Testosterone Priming. Not sure of the doses yet.

They would then do the egg retrieval, the CCS testing (Comprehensive Chromosome Screening) and freeze the normal embryos for transfer 2-3 months after. During which time I would be on Lupron.

All in all, without any actual costs yet, just from my own research and what they've posted on their website, we'd be looking at close to $35k for this first cycle. (and that doesn't include travel costs)

Wow. That's double what it would cost in Chicago.

There are so many reasons that I look at everything in Denver as a very good thing, however, the chances are still only 20%.

I asked my husband last night if it was selfish of me to even consider spending that kind of money on something that has such a small chance of working? His answer was an absolute no, but still, this is my issue and I feel extremely guilty.

This weekend since my consult, I've been questioning what the right thing to do is. Maybe we should try on our own a few months since my Laporoscopy would give us a better chance naturally? Maybe we should do at least one cycle with Chicago. We're going in blind as we have NO idea how I will respond.

I should probably mention that my second beta last week was 10.2. If you remember, on Tuesday it was 10.6. It went down a whopping .4. I had another drawn today. So until that is all the way down, I'm stuck in a holding pattern anyway.

While all around me, friends and family are popping out their babies, finding out genders and going on with their lives. I kind of just feel stuck right now. I really wish CCRM had giving me a little more optimism, unfortunately, they didn't.

Tuesday, March 12, 2013

A positive WHA???

Okay, so a bit more to talk about today...

I went in this morning for blood work and and ultrasound to see why I haven't started my period considering I'm 20 dpo. I just got off the phone with my nurse and here's what I found out:

My beta was 10.6
My progesterone was 3.66
My estradiol was 211

Now, those are dismal numbers. Especially considering I ovulated 3 weeks ago. We still have to follow this to make sure the numbers go back to normal before moving forward. Maybe this was fate's way of putting off Chicago until my CCRM consult?

Or maybe, this is fate trying to give me a boost...I may not have many eggs left in my basket, but there are SOME and this can happen.

I'm going to hope that since the endometriosis has been cleared out, it allowed this to happen. I'm also going to believe that getting pregnant the same month as my surgery is why it didn't stick.

This makes me more determined than ever to see this journey through and know that this is going to happen for me. I don't know how or when, but I'm going to give it everything I've got.

Monday, March 11, 2013

Absolutely NOTHING going on over here

Well, I wish I had something witty, informative or exciting to report, but I don't. I'm on cycle day 39. I stopped progesterone over a week ago, had a big temp drop and spotting last Wednesday which I thought was the start of my period, but by Thursday it had stopped. For anyone about to ask if I could be pregnant, that is a resounding no. BFN's every day. You know I checked.

Tomorrow I'm going in for blood work and an ultrasound to figure out what's going on and if I need to induce my period. I guess all of this is working out for the best since my consult with CCRM is a week from Friday. So it's putting off Chicago while waiting to speak with CCRM. I just hate not knowing what's going on with my body. I know the surgery is probably to blame for the wackiness, but I'm just ready to move on...

I spent the weekend traveling to see my family on the east coast. I was forced to mingle with babies and baby bumps. I was only asked a few times if we were planning on having children and I sidestepped the question best I could. It seems no matter what I'm doing, where I go, infertility seems to follow me. Just can't get away from it. Or maybe it's just everyone else's fertility that I can't get away from.

Wish I had something more enlightening and interesting to talk about...obviously since I spent way to much time updating my blog background vs actually writing on it.

That's what's (not) going on for now...hopefully the coming weeks will bring LOTS of new posts with a solid plan of action.

Thursday, March 7, 2013

Dear God, What Have I Done...

I'm a train wreck.

Maybe it's time for a Google break. I certainly think that my hesitancy to completely trust my RE stems from Dr. Moron that completely screwed me. After all the struggles I've gone through to try and pick the right doctor for IVF, I feel like the night before the dawn and here I am, questioning EVERYTHING.

Quickly, I am on CD 35. I had super light spotting yesterday, but it's stopped. I know my periods are always very light, but that was pretty light even for me. I couldn't even call it cycle day 1, so I'm in limbo at the moment. Still waiting on this next cycle to begin and I'm supposed to then start the birth control pills.

Back to my crisis. I'm on several threads for women with diminished ovarian reserve (DOR). All I keep reading on those threads, when I google, is that I am on the WRONG protocol. That I should NOT be taking the massive amounts of stims that they are planning for me. That we should be going for quality, not quantity because, well, we already know that quantity isn't an option for me.

So I started looking at CCRM in Denver. Their stats for women with DOR are amazing. Unlike any I've seen anywhere. I originally made a phone consultation for May, thinking, okay, if this first IVF fails, I've got a back up plan. Then I started wondering, am I just wasting $17k by doing this plan that I'm not sure is right for me? I looked up the data for Chicago and while when comparing to Indianapolis, their stats are better. When comparing with Denver...well, there is no comparison. It's 6.7% vs. 70% success rates. So do we put this off, wait for the consultation, then pay a little extra for hopefully a better plan?

I spoke with CCRM again and they were able to get me a new phone consult in 2 weeks, which was amazing considering their wait time. She also said while typically it's 3-4 months before the start of treatment, it can happen a lot sooner if the doctor thinks that's necessary.

Question is...what do I do for these next 2 weeks? Do I start the birth control pills anyway? Do I wait to hear if CCRM recommends the same protocol as FCI and if so, stick with my original plan? Or do I just walk away from Chicago? It's such a hard decision because I feel like I've been out of the game for so long...since November. Time is of the essence for me and I feel like road blocks keep popping up left and right.

What is the right decision anymore?

Saturday, March 2, 2013

And I Come Full Circle

I woke up to a post of a fellow blogger this morning that has really got me stirred up. The post was about endometriosis awareness month, which apparently is this month. It's what I have since found out based on her post, that I am so incredibly thankful for. Before I get into that, a little background.

Many of you may know, I lost my mother over 4 years ago to ovarian cancer. She was 52 years old. She had a very rare form of ovarian cancer, clear cell carcinoma. This type of cancer accounts for less than 5% of all ovarian cancers. My mother did so much research, but even 5 years ago, the knowledge about clear cell carcinoma was very scarce. My mom seemed to be focusing most of her attention to the connection between DES exposure and clear cell. She was also tested for the BRCA gene but was negative. An important fact about clear cell carcinoma is that it is very hard to treat due to its drug (chemo) resistance.

One thing that was never discussed or brought up was endometriosis. I don't know that she was ever diagnosed. Surely, had she been, she would have put a connection between the two. I can't ask her now, but I wonder if it's possible that she had endometriosis and was never diagnosed. I was her only child and she had me at age 20. She had a hysterectomy in her late 30's but I don't remember the exact reason. Something about a collapsed bladder comes to mind, but since I was a teenager at the time, I can't say for sure. Because of her age, they did not remove her ovaries.

So in the past few hours since reading the post below, I have found out the following:

Women with Clear Cell Carcinoma - Less than 5% of all ovarian cancers. 70% of women with clear cell have endometriosis.

Women with Endometriosis - Are at an increased risk to have ovarian cancer. Have 3 times more likely hood to have clear cell carcinoma.

I was first diagnosed with endometriosis in 2008 during my first laporoscopy. This was long before we started TTC, and more of a preventative measure because we thought I might have endo and I didn't want to have issues TTC when we were ready. (that seems to have worked out well, eh?) At that time, my endo was mild and I went on the Mirena IUD to ward off any reoccurrence of the endo. One would have thought it would have worked since for the next two and a half years, I didn't have a period. Then I had the ectopic pregnancy while on the IUD, then we started TTC, which has lead us to today where I have had my second laporoscopy and diagnosed with stage III endo along with my diminished ovarian reserve (related?).

What does this mean to me right now? Well, it means I need to have a chat with my obgyn. We've done annual ultrasounds and CA-125 tests since my mothers diagnosis as a part of my annual exam. That I'm sure we'll continue to do. Other than that, there is nothing I'll do. Obviously having a child is first and foremost. However, in light of this information, I do know that I where I was considering having a complete hysterectomy after having children, I now know that I will absolutely have that procedure once our family is complete.

My mother was devastated for my closest friend during her fertility journey. She cried for her and wanted so much for her to have that child she dreamed of. After my mother died, that child finally arrived and I know my mother would be giddily jumping up and down with her infectious smile seeing how happy they are. What hurts is knowing how it would effect her to know what I'm going through now. More than anything I wish I had her to talk to about all of this. There is no one I'd rather have than her right now. She'd be the one researching the best treatments, the best doctors and the best protocols. She'd also be ALL over this endo/cancer connection. So the best gift I can give her is for me to make myself as knowledgable as possible in all areas of my health. After all...I was her baby.

Jessah's blog post