July 31, 2009

Thyroid Diagnosis: Hashitoxicosis

Finally, a firm thyroid diagnosis and a plan: Hashitoxicosis and (hopefully) surgery to remove my thyroid.

Hashitoxicosis is a relatively rare thyroid condition, but R and I tend to fall on the rare side of the odds when it comes to health issues, so that doesn't really surprise me.

It's just such a relief to finally have a name for it. I've been reading about hashitoxicosis today, and it's so weird to read stories of others who have it and think "That's me! That's me!" as I'm reading what they're describing. Basically, it's an autoimmune disease in which antibodies will attack the thyroid intermittently, causing it to spill excess thyroid hormone, which creates a hyperthyroid state. However, since it's intermittent, it's also possible to have times the thyroid is normal and even times that it's underactive.

My endo made the diagnosis based on how my thyroid-related hormone levels have repeatedly fluctuated significantly in relatively short periods of time (one month or less), and a thyroid uptake scan done this week that showed my thyroid was definitely taking up iodine at too quick of a rate.

The most common treatment for it is a high dose of radioactive iodine to destroy the thyroid. That usually creates a hypothyroid state, which is much easier to control than a rapidly fluctuating overactive thyroid. However, I had some major concerns about that:

- you have to wait at least a year after the RAI before getting pregnant
- it takes 3 to 6 months to determine if it was enough RAI to do the job, so if it wasn't, you have to take another dose, which means it could be even longer than 1 year before trying to get pregnant
- there is very inconsistent information out there about how long you have to stay away from other people after receiving the RAI (the radiologist who reviewed my uptake scans said 3 days, endo said 5 days, I've read anywhere from 2 to 11 days on the Web)
- I've read lots of stories from thyroid patients who have taken RAI who have had other issues crop up afterward that they attribute to the RAI
- my family doc, and more importantly RE, recommend against RAI
- RE says his patients who have taken RAI have only had success rates that are about 50% compared to his thyroid patients who didn't take RAI

I brought up the one-year wait issue, and endo asked how I would feel about waiting that long or longer before doing a transfer. I pointed out that we've already been waiting 7 years, and I'm in the latter half of my 30s and would like to try to have two kids before 40 (the original goal was two before 30!), so she was very sympathetic and agreed that surgery would be a reasonable approach in my case given all of that. The question is whether the surgeon will also agree to that. Since a surgeon's whole job is to operate, I'm hoping he will.

I'm so happy to have a diagnosis, but on the other hand a bit of me is angry, too. Hashitoxicosis patients are often misdiagnosed as having emotional issues or told that they're being hypochondriacs. There are so many times I went to my former family physician with issues that he couldn't explain, and he just told me I had anxiety and don't handle stress well. I mentioned some of those to the radiologist and to the endo, and they both said they suspect it was my thyroid causing the symptoms (onset of major tremors, racing heartbeat, etc. that developed out of nowhere over the course of a week). Part of that anger is directed toward myself, though, because I knew my complaints were being dismissed, and I didn't stand up for myself.

But mostly, I'm just hopeful that getting the thyroid issue resolved will help me to be much healthier. It won't guarantee a successful, healthy pregnancy, but it will give us a better shot at it.

July 19, 2009

A Good Week

There's definitely some truth to the idea that sometimes the anticipation of something is worse than it actually happening. The first week of being 35 has actually been a pretty good week.

Nothing particularly exciting happened; I've just been in a good mood for some reason. On Monday, a co-worker who is trying to get pregnant brought in a book to show me - Dr. Robert Green's Perfect Hormone Balance for Fertility. And while I've been content to think of a transfer as something far off in the future, the energy to deal with infertility is actually slowly returning.

I ordered the book, because I have his Perfect Balance: Look Younger, Stay Sexy, and Feel Great, and when R and I followed the book's 2-week sample menu for a couple months, the results were amazing. We lost weight, my skin was the clearest it's been since about the 1st grade, R's incredibly sensitive stomach was sensitive no more, and his nails went from being brittle and cracked to totally normal. So I'm interested to see what the fertility book will bring. It didn't look like it has a menu, but my co-worker said it's the best book she's read on fertility so far.

I've also lost just over 20 pounds as of this past week, so I'm happy about that too. Ideally I'd still like to lose another 80 pounds (dream weight), or at least another 60 pounds (very healthy weight), but realistically I'll be lucky if I lose another 40 pounds (still technically "overweight" according to all the charts) between now and whenever we do a transfer. But at least "overweight" is better for a pregnancy than "obese" is, which is still the category I fall into at this point.

My thyroid is still freaking out. Last month's test showed my TSH was 0.005, which is very low. I'm actually quite glad, because at least I'm not going crazy imagining symptoms, they really are happening. I'm supposed to have a thyroid uptake scan this week or next to determine if it really is thyroiditis or if it's regular hyperthyroidism.

My dad is doing ok. I'm probably going to see him again in a few weeks, possibly to accompany him to his next doctor's appointment. His first round of chemo pills last month reduced the cancer cells to 6% of his blood (down from 25%).

However, because he didn't go completely into remission, he's been kicked out of the study he was in. His doctor has given him a couple different options. It sounds like the preferred route is another round of chemo pills, but this time for 17 days instead of 7. Since he's no longer in the study, the pills aren't free, so he's trying to find out if his insurance will cover them. If not, it's about $10,000 for the 17 days, and it's not guaranteed that he won't need additional pills.

The other option is a more aggressive form of chemo taken as a hospital in-patient, but I don't think it's been determined whether insurance will cover that, either, and it's more risky because it could damage his kidneys and start to shut down his organs.

Overall, though, he's handling it with amazingly good spirits, which makes it easier for me to handle, too.

Here's hoping for another happy week this week.

July 10, 2009

Turning 35, Feeling Fragile

In less than 12 hours, I will officially reach the age that makes REs hyperventilate.

I've actually been doing pretty good about it - mostly just ignoring it. Non-IF pregnant women in their ignorant state of bliss haven't annoyed me any more than usual this week. I had lunch with a friend today, and she told me about a former co-worker whose wife had their first baby a couple weeks ago. They got married less than two years ago. Yea, hooray, whatever. Not a single tear of self-pity welled up.

Then R's dad called tonight. We celebrate my birthday and R's brother's birthday together, because his birthday is the day after mine. I picked the restaurant, so it's R's brother's call for the movie.

The (32-year-old, single, childless) man wanted to see "Up". I'm sorry, but I'm going to be downer than "Down" if I have to spend 2 hours of my 35th birthday sitting in a theater surrounded by children, thinking about how I'm now 7 years older, 50 pounds heavier and $100,000 poorer than when we started TTC. I don't care if it's the best movie of the year, the most fantastic example of animation ever created - I can't do it.

We're going to see "The Hangover" instead. And although I've never been drunk before (I don't like the taste of alcohol, so can't drink it fast enough), I may just decide to end the day with a hangover myself.

P.S. I appreciate all of your thoughts and prayers for my dad, and I'll update more about him soon. A quick synopsis: He had another bone marrow biopsy this week, and he's supposed to get the results next Thursday, so we'll have a better sense of what's going on then. The pills his doctor gave him last month did, in fact, turn out to be chemotherapy. He tolerated it very well, and he is very proud that he still has his hair. I'll be going out to see him again soon, but I don't know exactly when yet. (KayJay, thanks for asking. And, congrats on beta #1!)

July 05, 2009

Thyroid Levels

I've been promising to post my thyroid test results for about 8 months now. Clearly I've been lazy about it, but for those of you who are into this sort of thing, here they are, finally. I'm including the test names exactly as they are written on the lab results, with the normal ranges in parentheses and abnormal results bolded:

Sept. 2001 (family physician, part of bloodwork for a routine physical) - T3 uptake 35.8% (23.4-42.7); Thyroxine (T4) 7.9 (4.5-12.5); T7 Index 2.8 (1.2-4.3); TSH 0.19 low (0.40-5.20)

Sept. 2002 (family physician, part of bloodwork for a routine physical) - TSH High Sensitivity 1.10 (0.40-5.20); Free T4, Non Dialysis 1.0 (0.8-1.9)

March 2003 (ob/gyn, for irregular cycles after starting TTC, got diagnosis of PCOS at this time) - TSH High Sensitivity 0.51 (0.40-5.20)

April 2005 (endocrinologist, regarding PCOS while on a break from TTC) - TSH High Sensitivity 1.18 (0.45-4.50); T4 Free, Non-Dialysis 1.5 (0.8-1.9)

October 2005 (family physician, part of bloodwork for a routine physical) - TSH High Sensitivity 0.41 low (0.45-4.50); T4 Free Non-Dialysis 1.6 (0.8-1.9)

July 2008 (RE, one-day workup) - TSH 3rd Generation 2.29 (0.40-4.50); T4 Free 1.1 (0.8-1.8)

Sept. 2008 (different familiy physician, part of bloodwork because she thought something was up with my thyroid) - TSH 0.092 low (0.45-4.50); Thyroxine T4 8.3 (4.5-12); Thyroxine T4 Free Direct S 1.30 (0.61-1.76); Triiodothyronine T3 188 (85-205); Triiodothyronine Free Serum 3.3 (2.3-4.2)

Oct. 2008 (endocrinologist) - TSH 3.19 high (0.30 - 3.00); Free T3 3.8 (1.5-4.1); Free T4 1.28 (0.80-2.00); Total T3 76.8 (65.0-185.0); T3 Uptake 32.3% (25.0-40.0); Total T4 6.3 (4.5-12.5); FTI 2.03 (1.13-5.00); Anti-TG Abs 69.2 high (0.0-40.0); Anti-TPO Abs <10.0 (0.0-35.0); TRab <1.0 (0.0-40.0)

Nov. 2008 (endocrinologist) - TSH 4.95 high (0.30 - 3.00); Free T3 5.7 high (1.5-4.1); Total T3 225 high (65.0-185.0); T3 Uptake 23.7% low (25.0-40.0); Total T4 10.5 (4.5-12.5); FTI 2.49 (1.13-5.00)

I'm no longer seeing the endocrinologist who did those last two rounds of bloodwork, because my company went with a new health insurance plan this year, and he isn't on it. I had an appointment about a month ago with a new endocrinologist, and I'm hopeful that she will be a good doctor to work with.

She was very patient and listened to my whole story. She was also encouraging about the baby thing, saying that "when" I get pregnant again, she wants to see me immediately and then will continue to monitor me every 6 weeks or so throughout the pregnancy. She and her husband tried for four years before they were able to conceive, and she just had her baby this year, so she really relates to us wanting to get (and stay!) pregnant.

She said she thinks I have a rare form of thyroiditis called Hashi-something-something-thyroiditis. (Not Hashimoto's.) She said a virus or other triggers may be causing my immune system to attack my thyroid occasionally, which leads my thyroid to dump all the hormone it's holding, initially causing my TSH to drop and then rise slightly abnormally high before settling down again. That kind of makes sense, because when I had the really low TSH level in September, the blood for that test was drawn about two weeks after I had a really bad cold.

My next step is to go back to her in August. I'll get the results of the bloodwork I did last month at that time; I'm guessing it was normal based on how I was feeling. She also wants me to repeat the bloodwork in the meantime if I think I'm feeling significantly hyper or hypo, but so far that hasn't been the case.

From there, she'll continue to monitor me every 6 weeks to 2 months until my bloodwork shows three consecutive normal levels. At that point, we'll look at doing a transfer, depending on how things are going with my dad and how I'm feeling about my weight and overall general health.

'Couple's Lov.emaking Session Sets House Ablaze'

Note to self: Buy a proper candle snuffer, so that the local media isn't forced to print a photo of us next to a headline like that.

Because we infertiles rarely have enough laughter in our lives, I will share the story of our near humiliation with you. (Just don't tell R, because he will not be happy with me for sharing, even in this relatively anonymous forum... :-) )

As you know, one of the silver linings of infertility (albiet one that we would of course trade in a heartbeat) is being able to sleep in during a weekend morning because there is no pitter-patter of little feet wandering around the house. Well, yesterday morning after sleeping in, we were in an amorous mood. So, even though it was daylight out, R set the scene by lighting a bunch of candles in our room.

Afterward, I got up and was in the bathroom when I heard the sound of running feet. I looked in the mirror, and there was R, dashing toward the bathroom, one of his hands held high in the air and orange flames leaping from the top of it.

When we extinguish candles, we use an unbent paperclip to extinguish the flame by pushing the wick into the melted wax, because it doesn't create smoke in the process, like a candle snuffer does. When R was lighting the candles, he noticed that the paperclip had been left in one of them last time, and the wax had hardened around it. (He swears it was me who left it there.) When he saw that, he decided to just leave it, figuring that once the wax melted, he'd just be able to use the paperclip as usual.

What he didn't count on was the fact that a paperclip, being metal, absorbs heat.

When he went to extinguish the candles while I was in the bathroom, the paperclip was hot. So he decided to grab a Kleenex, fold it up and use that to grasp the paperclip.

It was an approach that worked well...until he reached the last candle. As he lowered the paperclip to the wick, the flame caught a corner of the Kleenex, setting it on fire while R was holding it. Not wanting to burn the furniture, and having no bucket of water immediately handy, R decided to race across the carpeted room to the bathroom. He was about four feet shy of the bathroom when the charred Kleenex bits began to fall to the floor, catching it on fire.

Flames, it turns out, really can dance. And apparently, so can R, when the floor is on fire.

I stood there with my mouth gaping open, trying to comprehend the scene in front of me, particularly the facts that our house had just been literally set on fire and that the flames were moving rather rapidly across the carpet. By the time I came to my senses and whirled around to fill a glass with water, R had stomped most of the fire out with his (bare) feet. Then he was dancing around because his feet hurt, although thankfully he didn't get any significant burns.

Our light beige carpet had some black spots, but somehow between using carpet cleaner, a scrub brush, and the vacuum, R managed to return the spots where the burnt Kleenex melted into it to a nearly normal color. Thanks to the ceiling fans in our bedroom and bathroom, as well as some frantic fanning of the air, we also managed to prevent the smoke detectors from going off.

We were particularly grateful for that, because how would you explain that to a mother who lives with you (like mine does)? "Um, well, we were in the mood, and I guess things just really heated up..."

May 27, 2009

In Need of a Miracle

Once again, I'm reminded of what an incredible group of women the infertility blogosphere is comprised of. Thank you all for your support and words of encouragement.

Unfortunately, I don't think modern medicine is going to be enough for my dad; I think he's going to need some divine intervention to beat the leukemia.

In response to Ashley's question about the medical center where he was taken, he's in California, and his local doctor arranged for him to be taken to Stanford. That doctor told him he would likely be there for two to three months, but he got there late on Saturday night, and they were planning to release him today without any significant treatment at this point. (Not a good thing.)

He wasn't in great health before his diagnosis. He's had a couple of heart attacks and a stroke in the past five years, and he also has diabetes, high blood pressure, and high cholesterol, and because of all that stuff, he's already in partial kidney failure. The Stanford docs told him that aggressive treatment (i.e. high-dose chemotherapy) would likely kill him in 4 to 6 weeks.

The doctors presented him with six different options, and he chose to go home, wait for the bone marrow biopsy results and take pills of some sort.

I know, I know - I should have more information than "pills of some sort." But when he tries to talk, he has hacking coughing fits, and his wife is not the type of person who enjoys spending much time on the phone. I will probably call his doctor at some point, but I want to ask their permission first. Hopefully I will talk with them again tomorrow.

Ironically enough, I had an appointment with my therapist about two hours after I found out about the diagnosis on Friday. She asked how I would feel if my dad doesn't get to meet our children. I told her that wouldn't bother me as much as if my mom doesn't get that opportunity, because I'm my mom's only child, i.e., only chance for grandkids.

My dad has three other children from a previous marriage, and all three of them have kids; he's been a granddad since I was in high school. He lives near two of my three siblings, although I don't think he really spends much time at all with them or their children; out of all his relationships with his children, he and I are by far the closest, in large part because they grew up living with their mom in a different state than him.

I also figured that because we're in different states, even though he would love our kids, he probably wouldn't see them more than once every couple of years anyway. So I rationalized that it wouldn't bother me as much, and in some ways I do very much believe that. But listening to him tell me that Stanford is sending him home and that he's not a candidate for aggressive treatment, the tears finally came, and they were around this issue as much as anything else. Damn infertility if it has stolen the opportunity for my dad to meet my kids on top of everything else it's taken from us.

I was on the phone with R, relaying everything I'd found out, when I started to choke up. He was very sweet and quick to reassure me by saying, "Honey, he may not get to meet our kids here on Earth, but he will definitely get to meet them one day."

If anyone's medical issue was to be reversed by a miracle, it wouldn't surprise me at all if it was my dad's. He has a tremendous amount of faith and believes very strongly in "laying hands on people." But as we all know, God doesn't necessarily grant miracles in the way that we hope for them.

I'm heading out to visit him on Saturday morning. On top of that and work, my next semester of classes started yesterday. This time I'm taking two classes, and they're kicking my butt already - they involve much more reading and many more weekly assignments than last semster's class, so I may wind up having to drop one in light of everything else that is going on. I want to catch up with each of you individually, but please forgive me if it takes me a while to do so.

May 25, 2009

Turns Out Infertility Is Good For Something After All...

The first time I received an infertility diagnosis (PCOS), it was a painful thing to hear. A few months later, when my OB called to tell me about R's practically non-existent sperm count, it felt like the world was crashing in around me.

Almost exactly a year later, when we experienced miscarriage #1, it was absolutely impossible to even fathom how it would be possible to wake up one day and not have my first thought be of the baby we lost, impossible to think that we would ever be able to even laugh again.

But the thing about infertility - when cycle after cycle fails, diagnosis after diagnosis hits, baby after baby dies - is that eventually you deal with so much devastating news that handling it actually starts to come automatically.

My dad was diagnosed with leukemia on Thursday.

When I heard the news, of course it was like a punch in the gut. His symptoms came on quickly; I talked with him a week or so ago, and he was fine at that point. (Or at least if anything was bothering him, he didn't mention it and he sounded totally normal.)

Six years ago, this news would have leveled me. Instead, I haven't even cried, haven't even teared up. It's not that I don't care or that I'm not concerned, because I absolutely am. It's just that this is how far infertility has brought me - instead of falling apart, I automatically went to "What type of leukemia is it? What are the doctors doing for him immediately? What is the longer-term treatment plan?" etc.

I don't know the answers to most of those questions yet, other than that it's AML, which is the kind that has a less favorable survival rate. It's tough, because I'm used to being in the center of all the medical stuff and pushing to get answers, but this time I have to take a step back and respect that as his wife's role. She's not as pushy as I am. :-)

My dad lives in a very small town, and he started out in that town's hospital. However, he was supposed to be taken by ambulance last night to one of the best medical complexes in the country, which is three hours away from where he lives. I'm thankful he's going there, because that's one of the very best places he could be. But it's probably also a sign that the situation is pretty grave.

I expect we won't have much more information until toward the end of the week, because I'm sure it will take at least a few days to do the initial tests that his new hospital is going to want. I'm trying to figure out when to go see him.

May 20, 2009

What to Say?

I've decided it's time to kick the last post's title off everyone's blogroll, but I haven't been able to figure out exactly what to say. I've started several posts and saved them as drafts, but they all feel very convoluted and scattered to me.

I know I've been relatively quiet since the great micro array results from a couple of months ago. The reason is, a few weeks after the results came in, I had a follow up consult with RE that kind of threw me for a loop.

I figured given that we have 19 embryos to work with, we'd give me a shot with at least 6 to 8 of them before contemplating surrogacy. However, RE says if I have one more miscarriage, he'll recommend surrogacy at that point. That was a bit of a shock - I just wasn't expecting to be facing a "one more strike and you're out" kind of scenario with so many embryos on deck.

So, I decided to take the ostrich approach while I processed that. I didn't do anything infertility (or thyroid) related in April. I just chose to ignore the whole darn thing.

Of course, ignoring it can only last for so long, so last week I finally did get around to making an appointment with a new endocrinologist. That will be in the first week of June. A co-worker who also has thyroid issues recommended her. She's a young doctor (finished residency in 2007) and had a baby a few months ago. Co-worker said, "Maybe that will make her more sympathetic to your situation." I hope so.

Generally I prefer doctors who have had at least 10 years of private practice experience, but at this point I figured, why not give her a try? She can't be any worse than the endo who told me he wouldn't do anything to treat me until I start to show signs of congestive heart failure. Yes, that's right - he wants me to develop an irreversable heart condition before he'll take action to treat my thyroid condition. Infertility or not, he's out of his mind if he thinks I'm going to wait until that point before getting my thyroid addressed.

On a happier front, now that I understand what's going on with my thyroid, I think I've gotten the hang of managing my eating in a way that is helping me lose weight. I'm significantly upping my food intake when I feel the hyper signs, then as soon as I feel myself swinging to the hypo side, I start popping Synthroid for a few days and switch to eating salads for the last two meals of the day.

So far, I've lost 16 pounds in the last three months. There's still a looong way (weigh? - sorry, couldn't resist) to go, but at least I'm moving in the right direction.

Other than that, R and I are thankful we're both still employed, which is definitely never a sure thing in this economy, and we've embarked on a new (hopefully tear-free and heartbreak-free) adventure: we're buying our first investment property. It's amazingly nice to have a goal that doesn't involve needles and wand dates.

Once I manage to edit my other ramblings into semi-coherent thoughts, I'll post those too. But I'm starting the next semester of school next week (two classes this time - what was I thinking??), so I probably still won't be a super frequent poster. Looking at the syllabuses (syllabi?) for each class, I think I have about 200-250 pages of reading each week. Yikes!

May 04, 2009

Dead Baby Week

This is the week of the year that I dread the most, by far.

Tomorrow is the 5-year anniversary of Miscarriage #1. It's incredible to think that half a decade has passed, that I've made it through to such a different place than I was 5 years ago. Heck, some days, the fact that I've made it through at all feels like a miracle.

It's sad to think that we should have a child who is almost 4 1/2 at this point. And even though it's Cinco de Mayo and I live in a place where that's celebrated with almost as much fervor as New Orleans celebrates Mardi Gras, it's just not possible for it to be a day of celebration for us anymore.

Friday is the 3-year anniversary of Miscarriage #2. That pregnancy came and went so quickly - the day we found out for sure that I was pregnant is also the day we found out I wasn't going to stay that way - that it didn't feel quite as devastating as the first one. But it still counts, and I still hate that it had to happen this week, of all weeks. Some years, it falls on Mother's Day itself. Double ouch.

The other pregnancies didn't end during Mother's Day week, but for two of the three, that weekend still marked some sort of significance. For the twin pregnancy (pg #3, m/c's #3 and 4), I would have been entering my third trimester during Mother's Day weekend. Instead, we didn't even make it out of the first trimester. And last year, Mother's Day marked the 1-month anniversary of m/c #6, which was also D&C #2.

I just want to go to bed tonight and sleep through until next Monday morning. Hopefully at some point in the future, there will come a time when I don't hate this week so much.

March 29, 2009

Micro-Array Results are In

It's good news. News with significant ramifications, though, which I'm still trying to process.

Out of the 21 embryos that were biopsied, 15 tested normal. So just under a 75% normal rate. We're in shock.

However, those 15 embryos combined with the 4 "no results" from last cycle, means that we have 19 embryos to deal with. And since it was never our goal to have 19 children - or 57, if you consider that each one of them theoretically has the potential to divide into identical triplets – that also comes with the aforementioned significant ramifications.

I'm just trying to let this news sink in, and let all the different emotions that are swirling around in my brain, settle down. They include, in no particular order:

Disbelief, as in are these results really true? What if the lab made a mistake? If they didn't, why did this cycle turn out so well, when last cycle we didn't have any confirmed normals? I think the only way to determine that for sure would be to thaw all of them, rebiopsy them, and then send the "no results" batch to the micro-array lab and the "normals" batch to the CGH lab, and see if they come back with similar or different results. But I'm not keen on thawing and refreezing them, so I doubt we'll do that.

Hope, which out of self-preservation my mind and heart have tried to squash (although never succeeding completely) over the course of this nightmare, especially the last couple of years. Now it's back, as much as my inner self will allow it to be. It's not a jumping-for-joy, shouting-from-the-rooftops kind of hope, more of just a small, quiet thing that is being allowed to sit tentatively in the corner of my heart for now, acknowledged but not a guarantee of anything.

Fear, because as much as everyone will think "wow, they've got it made now!" and as much as the staff at the clinic are shrieking in excitement, we've been on the wrong side of tiny, tiny odds too many times to count. It could happen again, folks. When you've lost six babies, the core of your soul eventually comes to accept that which most people are blissfully ignorant of their entire lives – nothing, NOTHING, in this world is ever guaranteed. Not even when there are 15 supposedly chromosomally normal embryos with your name on them.

Sad, because odds are that at least a couple of the babies we've lost were chromosomally normal. In May, it will be five years since we lost the first one. Half a decade. I wonder what they would have been like, think about the milestones they would have been reaching. I still ache for each one of them, every day.

Guilt, because odds are that at least a couple of the babies we've lost were chromosomally normal, which means it's my body's fault that we lost them. When I see another IFer post something like that, my instinctive reaction is "No, it's not your fault, there are just some things beyond anyone's control." And I believe that 100 percent. Yet the guilt is still there, underneath it all.

Fear, because what if we put one back and it works, and then a couple years later we put one back and it works, and then we have 13 remaining chromosomally normal embryos, and four other "no results"? I might, might be able to talk R into one more at that point (and who knows if I'd even want to?), but I definitely couldn't talk him into 17 more. Not that I would want 17 myself! And then would come the painful process of letting go of them and finding other families for them. And after you've worked so hard, endured so much, for so long, how do you live knowing that pieces of you, the two of you together, are out there walking around, without you to take care of them?

Overwhelmed, because if we transfer 4 or 5 or 8 of them to me and none of them work, we're going to have to attempt the gestational surrogacy process. And that's a whole new, huge, overwhelming task that I can't even begin to contemplate tackling. Not to mention, it will involve R or me (or both of us) having to get a new job that has surrogacy coverage, because we definitely don't have the financial resources available for that on our own.

Fear, because if we have to use all 15 embryos to reach our goal of two or three children, that means there's a whole lot of heartbreak, be it negative HPTs or miscarriages, that will have occurred along the way.

Fatigue, because this means there are now 15 chromosomally normal embryos between us and the end of the treatment road. I realize that's a great dilemma to have, and don't get me wrong - I'm incredibly grateful to have this dilemma rather than the alternative. But still, it's been a long 6 years, we don't know how many more we're facing, and right now I'm a heck of a lot older, fatter and more tired than I was when we began this process.

In a lot of ways, this 75% normal rate is the best outcome we could hope for, and I know that. But regardless of what the end of this road turns out to look like, this outcome is also a guarantee that there will continue to be tremendous pain along the journey to that end.

March 01, 2009

Freezing But Having Fun

I know I've been quiet lately. Everything is fine, I'm just trying to get into a rhythm. And now we're on vacation, so I don't have much Internet access.

So far, I'm not terribly great at juggling school and work. (I started working on my master's degree online two days before I headed to Colorado for our January cycle.) And I decided to ease into it by starting with just one class for this first semester, so I can't imagine what all the rest of the semesters will be like with two classes each! I keep saying I'm going to get ahead, but right now I'm still turning in all my assignments the day before or the day they're due...

Nothing new on the IF front at this point. This Wednesday, it will be three weeks since the embryo cells were sent off for micro-array, so I imagine it will be at least a few more weeks before we get the results. But between school, work and vacation, the time is flying by.

On a much more fun note, R and I decided after the November cycle that we needed a vacation. 2008 was a tough year, with R's company kicking off the year with a major layoff, miscarriage #6, all his dad's heart problems, R winding up needing a defibrillator, and it taking six friggin' months and a couple of false starts for us to get to the point of being able to do the November cycle.

We started our vacation by flying out late on Friday night. On Saturday, we met up with my best friend and went to a place called Jillian's (I imagine it's like a Dave & Buster's, although I've never been to D&B.) Jillian's has an arcade, pool tables, a bowling alley and food. We played air hockey, skeet ball, basketball hoops and some other games. I also spotted a Chocolate Cafe nearby, which is totally my kind of place, so I dragged my friend and R there and bought $26 worth of chocolate. (Not all for me, I swear!)

Then we said goodbye to BFF and drove a couple of hours to see another close friend of ours. Her oldest daughter, now 17, was the flower girl in our wedding, and I consider her and her younger sister to be my nieces.

They had gift cards to an even more yummy chocolate place, and my friend (without knowing about the chocolate I'd bought earlier in the day - even I'm not that much of a chocolate whore!) suggested going there and stocking up. We wound up going there before dinner, just to make sure we got there before they closed. We spent $57 on chocolate - yikes! But it was for 6 people, so I suppose it's not quite so bad if you look at it that way.

We went to dinner, went back to her house and dug into some of the chocolate, and then I stayed up until about 1 a.m. helping my older niece paint her bedroom royal purple on three walls and black zebra stripes on the fourth, white wall. It sounds extreme, but it worked, especially once she started putting the room back together. It was great to see all of them.

Then we drove a few more hours to meet some other friends of ours, and tomorrow the four of us are getting up and driving five hours to the Traverse City, Michigan area, where it's supposed to be about 20 degrees. (Keep in mind, back home it was 85 degrees this weekend!) This is cold unlike any we've ever experienced! :-)

But we've rented a great place that has a fireplace and a 6-person hot tub, so we'll find ways to keep warm. We're going to go snowmobiling, play board games, just relax and have fun. Something we don't do nearly enough!

February 10, 2009

Dead Silence and a Thud (Day 5/6 Report)

The dead silence part is my mouth hanging open, the thud is my jaw hitting the ground.

Of our 29 embryos, 22 made it to Day 5. They were able to biopsy 13 yesterday, which is 60%. For comparison's sake, last time they were able to biopsy 6 of 18 on Day 5, or 33%.

Last time, they grew out 12 more to Day 6, and wound up biopsying 4, or 25%. This time, there were 9 they weren't able to biopsy yesterday that they grew to today. Of those, they were able to biopsy 8, or 89%.

Overall, they biopsied 21 of the 22 that made it to the blast stage. (Insert dead silence, thud here.) Apparently, we've set a record for the most number of blasts biopsied from one retrieval. This batch is being sent out for micro-array rather than CGH, so that hopefully we won't get as high a percentage of "no results" this time around.

Both the embryologist I spoke with yesterday and the one I spoke with today gushed about how amazingly perfect our embryos look - they said there wasn't one average-graded one in the bunch. I swear, I think they were doing a little happy dance on our behalf.

But then I mentioned to today's embryologist that I've noticed from other patients that the embryos that are graded the best tend to be the abnormal ones, and she said, "Yeah, a lot of the ones that we would recommend transferring based on how they look come back abnormal. We've been very surprised by that." So basically, she agreed with me - after telling me that all of ours look fabulous.

Then she went on to add, "Down's Syndrome embryos in particular make beautiful blasts. They tend to look great on Day 5!" Gee, that really helps, thanks.

I know, I know. I should be very grateful. And I am. And I keep telling myself that this was a different protocol, so hopefully it will have a different (better) outcome.

But I have to admit, the biggest part of me is still afraid that I'm going to get a phone call in two months telling me that we have 21 absolutely beautiful, totally abnormal blasts.

February 07, 2009

If Only Looks Mattered (Day 3 Report)

Of our 29 embryos, 25 are in the 6-10 cell range that the lab likes to see on Day 3. Three of the other four are 5 cells, and one is 3 cells.

The embyrologist who called with our report says the 25 look "perfect" and this is "exactly what we want to see."

If only that counted for something. But our embryos always look great, and from the anecdotal evidence I've read from other ladies who have had CGH done, it's usually the highest-graded, best-looking ones that turn out to be abnormal, and the average-to-poor looking/graded ones that come back normal. Last cycle, it was our more average-graded ones that came back with "no results." Not to say that those are normal, because they could go either way, but the great-looking ones were definitively abnormal.

At this point, there's nothing else to do but settle in for the 2mw (2 month wait). And perhaps use the time to work on shrinking my ass down from the size of Australia to the size of Alaska.

February 06, 2009

You Know You've Been Dealing With Infertility Too Long When...

...you find Band-aids stuck to your ass that you've long since forgotten about.

I just discovered Monday's trigger shot Band-aid - it had survived four showers and at least 8 changes of clothes.

Then again, perhaps it's not all that surprising. It was a small, square one, about a centimeter by a centimeter. And since my ass is about the size of Australia right now, something that tiny is easy to overlook. :-)

February 05, 2009

Fert Report

This cycle: 38 eggs, 31 mature, 29 fertilized
Last cycle: 30 eggs, 24 mature, 18 fertilized (6 abnormal embryos, 4 "no results" embryos)
First cycle: 32 eggs, 20 mature, 17 fertilized (2 day3 embryos transferred, 8 blasts transferred, 2 pregnancies, 2 miscarriages, 3 dead babies)

All I can say is we darn well better have at least one normal embryo this time around.

February 04, 2009

Retrieval Report

My ovaries, little over-achievers that they are, gave up a whopping 38 eggs this morning.

Between all three retrievals I've done, that's a total of exactly 100 eggs.

Please don't say "congratulations." I realize that if you're someone who struggles to get 3 or 4 eggs, 38 sounds like manna from heaven. But there's an inverse relationship between quality and quantity, and I'm at about double the maximum quantity RE was hoping for (20). And I won't bore you again with all of the details I posted last cycle about an IRL friend of mine, but suffice to say she probably hasn't made 20 eggs combined for all 4 of her IVF cycles, yet she is now 20+ weeks pg with her second baby. Even without this cycle, I on the other hand have produced 3 times as many eggs as her, and yet don't even have half the number of kiddos to show for it. And ultimately, that's the only number that means anything.

My ovaries clearly either do absolutely nothing, or else go into super-turbocharged-hyper overdrive; there just doesn't seem to be any way to coax only a few eggs into production.

Last time I had 30 eggs, and I wasn't required to go back in the next day for an ultrasound. But this time, RE is more concerned about OHSS even though we aren't doing a transfer. They gave me some sort of special fluid in the IV to try to prevent it, which I hadn't even heard of before. I also have to go in tomorrow morning for an ultrasound, and I've been instructed to continue eating salty foods for at least a week. (The salt keeps the fluid in your arteries and veins so that it is less likely to flood into the ovaries and start filling all of those now-empty follicles with fluid.)

But so far I feel fine and have minimal pain, so I'm hoping I won't develop OHSS.

Now we wait for tomorrow's fertilization report, Saturday's day 3 report, and Monday and Tuesday's biopsy reports.

On a semi-related note...we spoke with the genetic counselor yesterday. She said several patients who did CGH around the time we did had the same problem with no results, including some not from CCRM. (RMA is the lab doing CGH, so I imagine they're offering it to their IVF patients as well.)

Anyway, she said the RMA lab disposed of all of the "reading agent" (I think that's what she called it) chemicals and brought in a new batch of chemicals to see if that would fix the problem. But CCRM is now steering patients to micro-array until they get word from RMA that the issue is definitely resolved. She quoted us a 4-6 week wait, but we'll see what happens...

February 02, 2009

Triggering Sooner Than Expected

Well, well, well, apparently my ovaries have decided to sit up and take notice after all.

Since my follicles' growth was rather pathetic on Friday, I didn't have to go back for another ultrasound until Sunday. There was growth, but it was still slow - 1 or 2mm, and most of my follicles were in the 13-15mm range. I think the largest was maybe, maybe 17mm.

So you can imagine my shock when the ultrasound today showed a few that were over 20mm, and most of the rest at 17-18mm. Somehow between yesterday and today they achieved about 4 days worth of growth!

I thought for sure RE would have me stim for one more night, but nope - trigger is tonight. Wow. So retrieval is Wednesday, and we're heading home on Thursday night.

Hopefully by this time next week we'll know how many they were able to biopsy. And then we settle in for another two-month wait.

Our nurse mentioned that the genetic counselor wants to talk with us about doing micro-array instead of CGH this time, since we wound up with so many "no results" last time. She wasn't in today, so that conversation will happen tomorrow. I know she explained the differences when we met with her last summer, but I don't remember the difference.

January 28, 2009

My Ovaries: Neither Shocked Nor Awed

First things first: if you haven't visited MamaSoon yet, please go send her some hugs and encouragement. I thought I was disappointed with our four "no results" results, but her two-month wait ended with an even more unexpected outcome.

This whole process is so frustrating - it seems like there's always more waiting to do. In R's and my case, we're waiting on my ovaries, which were not at all shocked or awed by the increase in stims: Here I am on day 8 of the injections (8!), and my largest follicle measures in at a whopping 12 mm. Clearly, my ovaries are unphased by anything that is thrown at them, and they stubbornly continue to plod along at their own pace.

I really, really did not want to be here for two weeks again, so I'm rather annoyed that they made me come out so soon, but it is what it is. At least one of the perks of being here is better access - I finally got the embryo grading and CGH reports, and the chance to talk with someone about thawing and rebiopsying the embryos, all of which I had asked for two weeks ago but never received.

We've decided to just transfer back our four "no results" at some point without attempting to re-biopsy them. The geneticist said they've only had 5 couples opt to re-biopsy after getting "no results," and while they haven't lost any embryos in the process of doing so, it does put additional stress on them. We were leaning very strongly toward not re-biopsying them anyway, so we decided to just stick with our gut feel.

As for the rest of our embryos, here's how they broke down:

3AA on Day 5 - no results from CGH
1 on Day 5, 5AA on Day 6 - abnormal (chromosome 21 loss)
3BA on Day 5 - no results
3BA on Day 5 - no results
4AA on Day 5 - abnormal (chrom. 4 gain, 22 gain, technically considered "chaotic")
4BA on Day 5 - no results
3AA on Day 5 - abnormal (chrom. 22 gain)
2 on Day 5, 5AA on Day 6 - abnormal (chrom. 22 gain)
1 on Day 5, 4AA on Day 6 - abnormal (Turner's syndrome, which is missing the second gender chromosome)
C on Day 5, 5AA on Day 6 - abnormal (chrom. 5 loss, 22 gain, another chaotic)

It seems that others who have done CGH have had their best-graded ones come back abnormal, while the average or below average graded ones come back normal. So, I'm hoping that means at least a couple of our 3AA and 3AB ones are normal, though we won't know until we attempt to do a transfer and see if one sticks.

Despite all of the less-than-stellar "no results" results people have been getting from CGH lately, we will do it again, because at least in this case it helped us eliminate a bunch of them from transfer. It may not save us from all future miscarriages, but it probably saved us from at least a couple.

January 26, 2009

Hello, Ovaries, is Anyone Home??

I found out this afternoon that I have to be in Denver on Wednesday morning, so I'm scrambling to make travel arrangements and pack.

It's supposed to be 29 degrees for the HIGH tomorrow! 29 degrees!! BRRRRR! And 22 for the low. Keep in mind, I'm coming from 70-degree weather. My ovaries are going to freeze.

Although at the moment, they don't seem inclined to do much else, so maybe the cold temps will help shock them into action. Five days of stims, and if it's possible, I think my follicles have shrunk! Seriously, on Saturday a local RE measured only two of them (one on each side), and this morning, he didn't even bother to measure one. There was no point - they were all tiny.

So RE has decided to take a shock and awe approach: he's tripling my stims tonight. Granted, in my case, "tripling" means 225 units. Then tomorrow night it's 150 units. Still 1 vial tomorrow morning and Wednesday morning. I'll be curious to see what happens to my E2 levels, because last time my follicles stayed dormant until they bumped the stims to 150, and then my E2 went crazy and shot up from 1,100 to 3,700 in about 48 hours.

I have to stim faster this time, because I don't think my veins can handle having blood drawn for 12 days in a row again. Today was only the third blood draw, and the phlebotomist had to resort to a second stick. When I get to Colorado, I'm going to have to ask for the phlebotomist who used to work with cancer patients - she was a godsend during the last cycle. That lady really knows how to find a vein, even when there's not one to be found!

If anyone else is going to be in Colorado this week, let me know and maybe we can connect.

January 19, 2009

Ready, Set...Cycle!

Talk about going from 0 to 60 in 4.2 seconds. Last Monday was all about bad news. Today, we got our calendar for our next cycle: We're supposed to leave for Colorado on Sunday, with retrieval tentatively scheduled for Feb. 1.

I'm still in a bit of shock. When I spoke with RE about our CGH results, he said he wouldn't change anything about my protocol (Lupron, very low-dose stims). Then I received an e-mail from the nurse on Thursday saying he decided he wanted to try an antagonist protocol for the next cycle.

I don't know what prompted the change, and I don't really know anything about antagonist protocols, except what I've read briefly online. And all of that seems to indicate it's a protocol for a poor responder. Interestingly enough, the RE from IVF #1 also recommended an antagonist protocol for our second IVF. I thought he was crazy at the time. I guess I should probably start to accept that perhaps the REs really do know what they're doing better than I do.

The reason the cycle is happening so quickly (besides the antagonist profile not involving Lupron) is because CD1 decided to make an early appearance (for once!) and showed up today. So I had to scramble to arrange a baseline ultrasound and bloodwork for tomorrow, and then get my meds ordered so that I'm ready to start stims on Wednesday. Wednesday! Did I mention that I'm still in shock?

On a semi-related note...I've gone back and edited my last post. When I re-read it, I realized that the stuff I wrote about the possibility of re-biopsying the embryos and how I felt about it could come across as being judgmental. Please know I didn't mean it to be that way at all. Not that anyone has commented or sent me an e-mail about it, but I still felt it was important to go back and change it to make sure it wasn't implying anything I wasn't meaning to say.

I don't think re-biopsying them will be the right choice for us, although I can't say for sure because I haven't talked to an embryologist yet to get my questions answered. But even if we decide to transfer those "no result" embryos back without pursuing any further testing, I totally understand that others in a similar situation may make a different decision that is right for them and their situation. No judgment here at all.