August 27, 2014

Genetic Results

The results did not arrive until Monday instead of Friday, so it was more waiting all weekend up in here. We do have one genetically normal embryo. The normal was one of the three frozen from cycle one. I do not know yet if it was the AA or one of the AB's. We were not told gender, but I am hoping they will allow us to know since there is only one, if not now, maybe right after they transfer it. I feel....not much. Just numb or something. Intellectually, I "feel" grateful and relieved, but emotionally I don't really feel a lot. A guess it is self-protection. It is difficult to accept that cycle number two yielded one bad embryo.

Anyway, we are going into our last fresh cycle. I begin birth control pills tonight for a few weeks prior to starting stims again. We plan to put back this frozen normal embryo at the end of the cycle. I have been searching around for statistics on what to expect in putting this normal back. I estimate around a 60% chance, maybe more or less. At least it is a chance.

August 20, 2014

IVF #2-Saga Continued

After the disappointment of getting such a lower number of eggs and embryos sort of evaporated into please just let these we have do something, I felt a lot calmer. On day three, the five embryos that had progressed on day two continued to move forward appropriately--one was at nine cells and the other four were at eight cells. I somehow managed to muster some positivity, repeating what my RE had told me about the last IVF cycle being the best predictor of how our eggs would progress this time. There is no day four update, sadly, so it was out of my hands. I knew I would get a call on the morning of day five with what had happened and how many had been biopsied and sent off for the genetic testing. In my mind, I was hoping for at least two, possibly three to be sent. Based on last cycle, three embryos would be about half of the fertilized eggs, same percent as last time. They phoned to give me my transfer time for day six. I wrote all the instructions down, willing myself to believe that there would be biopsies sent on day five and at least one normal to put back on day six. I only had a few embryos, but maybe they were stronger on the inside. I did my usual obsessive googling and researching on day 3 embryos making it to day 5. Again, the fields of IVF and embryology are actually fascinating as hell if you aren't in the middle of them. It's amazing what they have learned in the last ten, five, even one or two years. In another five years, I'm sure they will have improved things even more.

I got my cell phone and house phone lined up beside the bed to make sure not to miss the early call on day five that would mean so much. Whenever I woke during the night, I'd check the clock an think about how much longer until my waiting would be finished. We woke up about eight, and still no call. They never gave us a time, but last time on day five we got a very early call confirming we still had embryos and come in for transfer. I reassured myself that maybe they call people in our situation last since we are not coming in that day. Also my nurse had been on vacation for the week prior, so maybe she was clogged catching up on stuff. Plus Mondays are haywire in the office anyway. We got up and ate breakfast and tried to pretend we weren't staring at the phones. Time kept passing. We calmly talked ourselves down from the ledge over and over. Once 10:00 am. hit, it was harder, because we always got a call between 9-11 in the past, and we knew that if they did any biopsy they would have had to have been doing it to send it in time for 24 hour testing. I started to feel what might be described as the beginning of an anxiety attack in my chest and heart. I felt like I imagine I'd feel if I was about to go out onto a stage and give an inspirational speech to a thousand people--physically anxious and sick. Even my calm and cool logician husband was coming out from his office to check in and ask what is going on with the clinic. We set a time to call if we hadn't heard of 11:00. (Neither of us is assertive/pushy, so this helped us set a goal.) At 11:15, I called my nurse and left her a voicemail, calmly checking in and asking her to call with an update. An hour passed with both of us really getting nervous. Why hadn't she called back? Something must be wrong. If there weren't embryos to biopsy, why wouldn't she just call us? Did they make a lab error and now were scrambling to figure out what to tell us? I called and left another message for my nurse at 12:15, this time nearly breaking into sobs toward the end of the message. I expressed that we were incredibly anxious not hearing anything and starting to panic. We went outside on the deck to eat lunch and try to brainstorm what the fuck could be going on. Clearly something was amiss. They would have had to have sent the biopsies to Florida by now already, so they knew something.

At 1:15, my RE phoned us herself to tell us that none of the five embryos was biopsied because none of them was in any shape to be biopsied. Three had reached blastocyst stage but had low cell counts in the outer trophectoderm layer. This outer layer is the part they steal a few cells from in order to do the genetic testing, as it is the part of the embryo that later becomes the placenta rather than the baby. My RE said that she has seen embryos with this issue that can manage to generate more cells. The other two embryos were not quite blasts--one was compacting (morula) and one was cavitating. Basically, none of them were where they "should" be for day five. She said that she has seen all of these progress to more normal blastocysts, but that it was unlikely. Asked to give us odds on whether any of them would be able to be biopsied on day six, she gave us 10-15% that one of the five might be. So basically the entire IVF cycle has come down to no transfer and possibly one blastocyst limping into contention on day 6. It hurt. A lot. I also just felt a lot of relief to know after waiting for two days and especially over the five prior hours. In actuality I'd been "waiting" on this outcome for the past three plus months since I had the D&C and planned to do another IVF.

I will give the RE credit. She sort of had a back up plan to offer us to help us accept the crashing of the cycle. Remember how they wouldn't be able to thaw, biopsy, and refreeze our three frozen embryos in tangent with the fresh cycle? Now she said that she had spoken to the lab, and they could do that on day six along with any fresh that managed to make it, and send all the biopsies on day six. We agreed to this plan, since we had already discussed sending the frozen later if this cycle didn't work out. The bonus would be (theoretically), that they were going to be able to charge one biopsy and one freeze fee for all of them together instead of trying to double charge us as they dumped on us last week. So in some ways this was costing us less overall, though obviously it would have been better to have the three fresh already being tested and a transfer planned. The nurse called me back later to sort of apologize for not calling me, saying that the doctor really wanted to call me, so that was why. I guess the doctor was busy until after 1:00. I could tell she felt bad and referenced my messages. She has generally been a great nurse so far--new since April--and I like her much better than my previous nurse, so I tried to just let my anger at her go. I know they are juggling a lot all at once, but it felt inexcusable not to just phone and say none were biopsied yet because they are not ready but the doctor wants to call you and touch base.

We didn't hear anything until late in the morning of Day 6. The nurse called to say that as of 7:20 a.m., none had made it to the right stage, though the compaction one had become an early blastocyst. She said they would recheck later and she'd call again. Much later in the day we got a call that one of the five was able to be biopsied--one of the ones with low trophectoderm cells had grown enough. So we did get one tested from this cycle. Unfortunately, I guess because it was later in the day, they opted to hold on the frozen three until the next day. The nurse said that they would only charge one biopsy fee still. I asked would they still only charge one freezing fee, and she said she would check on that, so please please let that be the case. Otherwise we will be paying $1750 to freeze that one limping blastocyst they tested that could be abnormal as well as another $1750 to refreeze the other three. Can I just say that I think it is total crap that the clinic charges a full fee to freeze even one embryo? They previously had a single embryo freeze charge of $250, but have since changed that. I am just hoping they take pity on us and let us by with one fee.

And so now today I will wait to hear if all three thawed okay and that the biopsies were sent off to the lab. Once the lab has the samples, we should hear within 24 hours if any of the four tested are genetically normal. That means that I should know by Friday. We were told that at my age, one in four embryos are likely to be normal, and we are sending four, but I am very anti-statistic. My feeling is they get that stat because many people get 3 or 4 normals--the good egg older people, but many people get all abnormal--the bad egg older people. There is a little part of me that has had an ongoing "feeling" (yeah, not necessarily worth anything) that one of the three frozen is normal. I sure don't know what to expect, but I am grateful that we will know the answer sooner rather than later!

Our plan has become the following:

1) Hope that one of the tested is normal.
2) Go into another IVF fresh cycle--our third and final try.
3) If we have a normal on ice, we will put it back in on day five or six after the fresh egg retrieval.
4) We do not know what we will do yet regarding any eggs or embryos from the next cycle, as it will depend on what normals we get from testing as well as how many embryos we get.

It is truly frightening to start reaching the end of the line in having a child that is a marriage of your genes and the genes of the person you love--a child you have fantasized about and envisioned for years. This realization is finally hitting my husband for the very first time. He has always been so much more positive and optimistic that this would work out for us than I have, so I don't think he let himself "go there" until now, when all of a sudden I don't seem to be a good responder to IVF, and we are truly down to last chances. We actually really talked about the thought of donor eggs last night among many other topics. He expressed that he never thought he'd even have to think about this idea, and my response was to recall how shocked and upset we were when our first RE mentioned IVF at our first appointment with her years ago. We honestly never thought we'd "need" that either. You fall through this infertility rabbit hole and tumble deeper and deeper, it seems. You wonder why you are the unlucky one that the treatments don't work for, but all along I've said that everyone who did not get a baby out of treatment never thought that would be her outcome. They had hope all along until they realized it wasn't going to happen. So much hinges on the call we get Friday. If we have a normal, we have a chance. If we don't, things will seem so much more ominous, though we still have a chance. It is just difficult to even know what the odds are anymore, and odds can be so comforting when they are helpful. Instead, we just have a plan to get us through this week and a few more.

I have to just pause and express gratitude again for the Affordable Care Act allowing me to even have these chances to have my baby. If we were paying out of pocket for all the meds and doctor visits, we would be over 25k in debt right now beyond what we have already spent out of pocket for copays, coverage, embryo fees, etc., which is not an insubstantial amount. We would feel even worse about everything because we would be financially crippled and looking at no more hope. Even when discussing donor eggs and adoption last night, phrases like $20,000-$30,000 were popping up and extinguishing any realistic hope of where to go if this doesn't work. I am emotionally exhausted, and I don't know what I would do if I were financially exhausted as well. How do you even determine the price of your innermost dream of having a family? As always, I just push that thought aside for the moment because it is too crushing to ponder while experiencing the day to day emotions of the rest of it. For the moment, I must just get to Friday and deal with that news, either way.


August 15, 2014

IVF #2

So many times I planned to update this blog as I was going through my second IVF over the past few weeks, and for a variety of reasons, I just never did. The main culprit, I believe, was my continuing feelings of detachment and ambivalence. Later,when things seemed to be going poorly, I just felt angry and worried and overwhelmed. Writing it out probably would have helped me to get some clarity or at least articulate my negative feelings. For anyone checking for updates that never appeared, I apologize. Now you will hear almost the whole story in one shot, so no suspense. This post is probably the longest post ever, so save it for a day when you have time to kill while waiting somewhere :)

Heading into this cycle, our tentative plan was very tentative because there were so many variations on ideas, all depending on how many fresh embryos we ended up with on Day 5 of this cycle. We contracted to have our Day 5 embryos biopsied, with the biopsies being sent to IVIGen in Miami by express that morning. The results would be phoned back to our clinic the morning of Day 6, and any embryos that were normal would be popped back into my uterus. I hated this plan on many levels--namely that letting the embryos hang out that extra day would result in a slight decrease in their quality that we could never get an exact figure to calculate. The positives of the plan were that we could utilize one of our insurance covered embryo transfers and see if we could get pregnant with a normal embryo and somehow escape this crapfest. Also, we would not be paying to freeze a set of biopsied embryos that would mostly and possibly all be abnormal. The freezing is about $1800. The plan created a time pressure--only those available at the exact right stage on the morning of Day 5 could be included. What if some or all were not ready? We would end up having to freeze the stragglers anyway or let them go. We also had an ongoing debate about what the heck to do with our three frozen embryos from last cycle--untested and unbiopsied. Essentially we decided we cannot put back untested embryos and endure a fourth miscarriage if it is caused by genetic issues. That leaves us with the option of thawing them, biopsing them, and then re-freezing them. Not ideal but the other choice is just leaving them there and doing nothing with them. As I obsessively rolled all of these ideas and scenarios around in my head for my weeks on birth control, I could never feel like we could make a "good" plan. As with most things in life, and especially infertility, the best plan can only be viewed in retrospect, after everything has played out and you finally have all the information you needed but couldn't get prior to your cycle. Obviously, for most people, us included, the other factor limiting your optimum decision making is MONEY. All the biopsies, testing, freezing, etc costs a lot of money. We'd happily agree to spend it all if we had any guarantees on what we could get for our money. Since guarantees are lacking, we try to plan for both good and bad scenarios and ponder long term plans in addition to this cycle. I cannot express well enough how frustrating this part of infertility is. You know you are doing the best you can given all the variables at the time, but you also know from all your experience that statistics are only useful to a certain degree. You've been on the wrong side of them so many times that you don't even know what to think anymore.

So with all of this in my mind, I started the shots. It's amazing how blase it all seems the second time around, actually. The hope and excitement are so minimal compared to the first IVF. Plus my husband has had a time consuming and stressful work crisis of epic proportions that has ballooned into a parallel pure hell involving ridiculous hours and pressure--right when we are getting back on the IVF hamster wheel. I couldn't be there for him in any major capacity. I couldn't "care" enough because I was consumed with thoughts and worries over what I was doing in the IVF side of this. At least his crisis involved a sense of control in that the things he was doing would have a clear impact on the outcome.

The base scan prior to starting showed a lower antral follicle count than I'd ever seen--eleven. They reassured me that because I was on BCP, not to make too much out of that, but of course I was worried and disappointed. I'd taken three months off to do acupuncture, eat a diet of even healthier foods, and take supplements, so I was hoping and even expecting to see something great. I tried to keep reassuring myself, but I had a bad feeling in my stomach.  My next visit in after the first three days of shots showed five small follicles. I was really upset because I feel like last cycle there were more follicles there to start. Again they reassured me, but I couldn't help stressing. Two days later, they measured only four follicles and saw five much smaller.  Now I felt sheer panic. During my first IVF at the same point, I had had fifteen measuring. I really hit a low point at this stage. I knew my first IVF cycle had gone beyond well, beyond my wildest expectations as far as egg and embryo production given my age. That first cycle spoiled me, and it was difficult to lower my expectations.  All I kept thinking of was our phone consult with the genetic people--the stat they gave was that at my age one in four of my day five embryos could be expected to be normal.  Last time, with the best cycle imaginable, I only had five day five embryos. What would be the outcome with this cycle? Was I going through all of this only to get no normals? The fewer I had the more likely this nightmare scenario seemed.

On my third visit to the office, they measured eight and saw maybe six smaller. At that point I felt like I had been given a slight reprieve. Even though it was not as good as last cycle, it was looking a little better, which is all I could hope for at this stage. Two days later, they measured thirteen, but the range of sizes was so vast, going from like 12mm up to 22mm. Some were ready to trigger and some were not close, which isn't good. They planned to hold off triggering another day to try to let some of the smaller ones catch up. When I went back for my scan the next day, some had caught up, some seemed to disappear or shrink (WTF?), and I had just given up on trying to understand or plan what would be retrieved. I think they measured twelve that day, and they triggered me that night.

Egg retrieval was two days ago. Everything was proceeding smoothly as we arrived and prepped--old hat in the surgical suite by now, sadly. I was the first retrieval of the day at 9:00 a.m. The practice is that the doctor doing the retrieval that day comes in to go over your plan prior to surgery. He got there just before nine, which seemed rushed. Of course it was the doctor I left in order to switch to my current RE!! Awkward but I assumed he would not even remember that or me. He was grumpy and curt, which I can honestly say is not usually how he is. He holds up our plan for us to sign, and I see on the plan a surprise--ISCI. (For the uninitiated, ISCI is when the lab actually captures one sperm in some type of syringe and injects it directly into my egg. It is used primarily for couples where there is male infertility, yet my husband's sperm is great.) We had not had that last time, nor had we discussed adding it. I believe last time we said it was OK to use if things didn't seem to be working au natural. I had not researched it fully, and I had heard some negative things about using it unless you had to use it. I couldn't remember what exactly the negative things were, but I felt incredible pressure as it was now approaching nine. I tried to ask the doctor about it. He said, "I'm just the messenger." He acted standoffish and rude. I will never know if it was because he remembered I had previously been his patient and switched, though it could have been his rushing. I tried to ask his medical opinion regarding ISCI and whether there were any negative consequences and whether it might have been added because we are doing genetic testing this time, but he would not really be helpful. If I ever needed reassurance that I made the right call in switching RE's, then I received it. I KNOW he knew something about ISCI and why it might be on there! Flustered, I said okay and signed it. I know a lot of people who have used it, but the whole thing was stressful, and husband had no idea if I was just freaking over nothing. So they walk me to the bathroom to pee one last time and then back to my cubby, where husband has now googled ISCI and has a bad feeling about signing it without time to process. The OR nurse is literally standing there to walk me to the surgery, so I said something to him like do more research or follow up on this. I was unclear. My meaning was that while I was in surgery, he could get the info so that when I woke up we could then tell them yay or nay before the lab got to work on things. He interpreted that as go into emergency mode and started asking the other nurse and even attempting to catch the doctor himself to get more info. Soooo, as I am on the operating table and the anesthesiologist is just starting to inject some sleepy meds, the other nurse comes bursting in and grabs the plan and says "wait your husband says you have a problem!" DRAMA. I am partially drugged, though he stopped when she came in. I start crying and saying sorry we didn't know about that and we felt rushed and can we check it after? So she says yes and I don't honestly remember this part well--just feeling stressed, embarrassed, and emotional, and telling everyone I am so sorry about this happening. 
 
I came out of the surgery and did some embarrassing things as I woke up--luckily funny embarrassing, causing my nurse to tell me I must be a hilarious drunk. I am glad I could amuse not only my nurse but the couple next door. I am sure it made their last minutes before their retrieval less stressful. In my mind I had decided that an okay result given the scans I'd had would be eight eggs retrieved. A great result wold be ten.  They got twelve. I felt happy with that. Last time we had retrieved fourteen. During my surgery, my RE had come down to meet with my husband and she wanted to come meet with me herself to discuss the ISCI. Her rationale was that with PGS, doing ISCI prevents one possible problem. In a regular fertilization method, they sit the egg in with a bunch of sperm, and one "winner" will fertilize the egg. However, a bunch of other sperm can end up as debris on the outside of the fertilized egg, and I guess there is a chance when they biopsy the embryo later that some of this debris (other sperm) can contaminate the biopsy somehow. There is a small increase in issues (she quoted 2%) with ISCI fertilized embryos. I felt I should defer to her opinion, and later googling didn't stress me out, so I guess we made the right call to go with it.

Yesterday morning I got the call I had been waiting for since I woke up from surgery--how many were mature and how many fertilized. Last time we had 14/14 mature and 10 fertilized. This time we had 9/12 mature and then 6/9 fertilize. I felt so sick when she was telling me the result. Again, last cycle just spoiled me. I have to say I am just disappointed and angry that everything I did seems to have had no effect, at least not yet. This cycle is so much worse than last cycle--we are only at 60% of where we were last time.  Also, last time only half of the fertilized embryos made it to blastocyst, so if that same stat happens this time, we are looking at only three day five embryos. Statistically, based on one in four being normal, there is a chance none will be normal. I can only assume that the variation in sizes among all the follicles meant that some of the eggs were not able to mature in time. On the other hand, I have to be thankful to have the six I have. I keep telling myself that maybe my efforts will pay off in the strength of the ones we do have somehow. Maybe more will grow, and maybe more are normal. My mantra is that I can't control any of this anyway.

There was a whole bunch of other drama that came out in that phone call about the frozen embryos we have not being able to be tested with the fresh now, as well as that costing us another $3500 that we hadn't been told prior. I was a hysterical basket case after that call. I won't go into all the details, since I feel a lot better today. This whole process is such a bumpy ride of ups and downs, and the process just erodes your emotional resilience and ability to cope effectively with setbacks. Luckily my husband was working from home yesterday and had some time to sooth me and make some charts for us to analyze money and odds with the new data. We have decided to let the frozen rest for now and see what happens with these six. Today I am sitting here waiting for the call that will update us on the fertilized eggs. I feel okay at the moment. "The one" could still be in this little batch of six, and I am not giving up on my little embabies trying to grow in the lab just yet.

BONUS: Just as I was about to publish this post, I got the call, so you will get the immediate thrill of knowing the update. As of today, five have progressed to four cells, while one has slowed down and is at two cells still. This report is not bad! I will take it. Now I have to wait another 24 hours to get the next scoop.