The Imperfect Science of Medicine

Currently I'm reading Complications by Atul Gawande. If you haven't read it, I highly recommend it. Gawande is a surgeon and uses case studies to discuss the imperfect science of medicine. He discusses the fallibility of doctors, the mysteries and unknowns of medicine, and uncertainty itself. As I'm reading the book I can't help but think about my experience with infertility and the doctors who have treated me. I understand and accept that my RE is human, yet I often expect him to have all of the answers. It's a strange inner struggle that comes from my need to be in control, but as I've learned over the last four years I am far from in control.

Last night and this morning I've been reflecting on our appointment. I have to admit that I'm not really all that satisfied with the notion that we just need to keep trying and hope that one of the good ones is transferred, but at this point the only other viable option is to move on to CCRM or SIRM and neither of us is emotionally ready for that at the moment (not to mention the expense and logistical issues involved). I guess I'd be more comfortable with our plan if the future transfers were going to be to me. I know that I can handle a potential miscarriage because I've handled 4 of them, but to ask someone else to risk going through that is tough. As Dr. S reminded me miscarriage is a risk of pregnancy and anyone who attempts to achieve a pregnancy must assume that risk. I get that and I know every surrogate also gets that, but until you go through it you don't know how you will feel or how it will affect you and your family.

The fact that I've had 4 miscarriages myself and 1 with a carrier weighs heavily on my mind. I realize that some of m/c with my uterus were likely due to my uterine problems, but the fact remains that we still don't know anything about those embryos that we lost. As a scientist I feel like I don't have enough data to analyze to arrive at a sound conclusion. At this point we are hypothesizing at best and we are hoping that future cycles will support our hypotheses. I have to remember that medicine is an imperfect science. Gawande reminds me that often medicine doesn't have all of the data because there are so many uncertainties and unknowns, yet they sometimes have to take a "stab in the dark". I know that there is science in reproductive endocrinology and as Gawande says there's also "intuition and plain old guessing". So, for now the best we can do is go with our intuition, hope that Dr. S's hypothesis that there are a few more good eggs will be supported, and ultimately just take a "stab in the dark".

Now What?

Hmm, haven't you heard me say that before?! I feel like I've been sitting in this very same spot a million times before over the past several years, yet I seem just as lost right now as I was the first time I sat here. I hate the limbo! I hate the not knowing of what we will do next or what direction we will embark on! I like to know where I'm headed as it always brings me comfort. I'm not feeling like we don't have a travel destination, but rather just that we don't have the GPS programmed yet. I'm obviously anxious to get the GPS programmed, so we can head off in the right direction.

I've talked with K about all that's happened with the miscarriage and emergency D&C. Not surprisingly K's husband was scared to death when he receieved a frantic phone call that his wife was going in for a D&C because she was hemorrhaging. As a result he feels quite strongly that K can't go through another cycle with us again. I don't blame him for having these feelings. He wants to protect his wife, the mother of his children, and the logical way to do that is to end the surrogacy journey. Additionally K's husband has some other reasons for not wanting K to continue, which I won't get into here, but all of his points are very valid. I understand that both K and her family need time to process all that's happened in the last two weeks before they make any final decisions, so we are going to give them some much needed time and space.

K and her family know that we will be moving on with our plans for IVF #2 and that we do not presume that they will be a part of our continued journey. It is important for my mental health and well-being to keep moving forward, so that's what we'll do. I will discuss surrogacy as a part of our future, but I will not discuss who will be a part of it. I need to give K and her family time to decide if they will continue on this journey with us or not. Of course we are hopeful that K will continue this journey with us, but we understand if she is unable to do so.

I told K that it's much easier for us to bounce back from the miscarriage because 1) we didn't go through the physical part of it, 2) we've been through 4 other miscarriages and are familiar with the wide range of emotions that accompany such a loss, and 3) it's not nearly as emotionally painful for us as was watching Myles die. Plus, years of being battered by infertility and recurrent miscarriage has made us quite resilient. Like I said before we stumble along this journey, but we keep getting to our feet and we forge ahead. We are "walking through flames" to get to our child. I have to say that this fall was a pretty bad one for me, in particular, because I expected surrogacy to solve all of our problems. I should've known better to think that it would be a smooth ride as nothing about this journey has been smooth. Despite this HUGE, devastating blow I still feel strongly that surrogacy will bring us a child, so working with a surrogate will be an integral part of our future journey.

I have my WTF appointment (i.e., post-IVF consult) with Dr. S scheduled for 3/31 to discuss our next step, so that meeting should help set us in motion. I hope that Dr. S is ready for me this time because I have a million questions for him! I'm guessing our protocol for IVF #2 will be similar to that of IVF #1 because I had a good response. I stimmed for 11 days with a combo of Bravelle & Menopur. My estrogen levels were low the whole time and never correlated properly with my follicle count, but my RE assured me that there are a select few women (go figure I'm one of them!) who have mature eggs as indicated by u/s despite what the E2 level indicates. He was correct. Here are my stats from IVF #1:

-21 mature follicles at trigger
-2 empty follicles at ER
-19 eggs retrieved
-16 mature eggs that fertilized with ICSI
-8 blastocysts (graded A; all frozen due to lining problems)

I'm guessing that he'll have me do the same protocol: slow and low seems to work for me! I was thinking that stimming during the school year might not be the best idea and thought about waiting until June, but maybe I'll start near the end of the school year if it works with Dr. S's schedule. I figure that the worst case scenario is that we won't have a surrogate to transfer our fresh embryos to, but realize that if that's the case we'll just freeze the embryos until we can find a surrogate. In my dream world my uterine lining would suddenly do something miraculous and grow thick so we could transfer to me, but we know that is highly improbable and very unlikely to happen.

Mourning in Mexico with Margaritas

Per K's request we are going to go to Mexican as planned. We fly out early tomorrow morning. We are hoping that the sun and tons of tequila will be good for us as we work through the emotions of this loss. I am worried about K, but I know that she has an amazing support system in her husband, children, friends and family. I know she's strong and I know she will be fine, yet I still worry. I assume that a little break from us may be helpful for K. She may need some time alone to work through the emotions of the loss. I know it's a different set of emotions to deal with than mine, but I'm sure it is just as challenging (if not more). K so wanted this dream to come true for us and now she has to deal with the utter disappointment and the physical pain. I just wish her peace and healing in the process.

BTW ... for those of you who have been wondering I did do the Brazilian wax. My appointment was Wednesday night and I figured that with the emotional pain I was going through any physical pain would seem insignificant. I have to say it really wasn't that bad and I'd definitely do it again.

I'm off to soak up some sun, regroup, and drink muchos margaritas! I'll try to do at least one quick post from Mexico, but promised J that I wouldn't be blogging during our vacation.

Walking Through Flames

I am at a loss for what to say. I am moved beyond words by your kindness, compassion, sadness, mourning and willingness to be mad at the universe with us. We will ever so slowly pick up the pieces as we always manage to do. K is strong and I know she will weather the storm and will come out fine on the other side, but my heart still hurts for her and for us. I know K wanted to do this for us to help us realize our dreams and I know she was aware of the risks, yet I can't get over how unfair it is that she has to go through this. Someone who gives such a gift shouldn't have to suffer. We have been openly communicating and are doing are best to try to support each other through this. As K reminded me this morning "we're in this together". That tiny little phrase warmed my heart and took away some of the guilt I feel for putting K through this. I was reminded that we are a team and that although it's not going to be easy for any of us, we will perservere!

I am saddened that the universe teased me and dangled my dream in front of me only to coldly rip it from me again. You'd think I'd be used to the disappointment and sadness of a miscarriage being that this is the 5th one I've lived through, but I can't seem to grow accustomed to it. Despite my best efforts to guard myself and prepare myself for bad news I'm left shocked and devastated. As most of you know this little embryo had an extra special place in my heart as he/she was conceived with Myles and frozen with him. This little embryo was my last living connection to Myles and now it's gone and my heart aches. With every miscarriage after Myles my heart aches more for him. The losses take me to the dark place inside of me where I am certain that I will never have another child and that Myles was my one shot at motherhood and I f*cked it up. (Please don't lecture me on my guilt over Myles's death. I'm logical and know I couldn't do anything, but it doesn't make the hurt and guilt in my heart any less sharp.)

I looked to surrogacy as my hope for the future and I never expected that this would happen. After having a day to reflect and think, I'm still convinced that surrogacy is the path for us to baby #2 (or #3). A friend asked me last night why I don't consider adoption. At this point I don't care to get into all the details of why adoption isn't the appropriate path for us at this time, but suffice it to say that it just doesn't feel right to me. I felt strongly when pursuing IVF that it would lead me to a baby and it led me to Myles. Yes, I had to go through hell and back to get there, but I was blessed with my wonderful, amazing little Mr. Myles. I would do it all over again and go through more just to have him for a minute of time.

Others have asked questions that leave me thinking they wonder how and why I put myself through this repeated heartache? I realize that it's difficult for some people, especially those who have easily conceived their children, to understand how someone would continue to go through such pain and devastation. It seems sadistic. But I ask anyone who's a parent to ask yourself this question ... Would you walk through fire for your child? I'm certain you all would. I am doing just that. I just walk a little longer and through a little hotter flames. I may stumble through the flames, but I manage to get up again and continue to walk. I walk through these flames for the child I know in my heart awaits me in the future. I feel it in my heart that surrogacy is the path that will lead me to another child, so when, and if, K is ready we will try again.

Fetal Demise ...

... yes that's right there wasn't a heartbeat and the baby hadn't grown in a week. There was a lot of blood forming all around the gestational sac, so I'm sure the miscarriage will happen soon once K stops the PIO. At least I hope for K's sake it's over soon and relatively painlessly. I was prepared for this and just yesterday hypothesized to my IVF nurse that this very same scenario would play out at today's appointment.

I am crushed yet again, but more crushed for K. I'm used to this kind of disappointment ... I've lived through worse, but K she hasn't had to deal with tragedies in pregnancy and now because of me she will go through the physical and emotional pain of a miscarriage. I did this to K ... I put her through this and I feel horrible. I brought her into my nightmarish world and I have forever changed her. K entered this journey with us to help us make our dreams come true and look what we gave her in return. K was strong and kept telling me not to worry about her. I am worried about someone who can give so selflessly to us and then be put through this incredible hell. This whole situation is f*cked up and unfair beyond words.

So, apparently it's not just my $hitty, ghetto uterus that I have to worry about anymore, but now I also have to worry about my f*cked up eggs. My beautiful, strong, highly-graded embryos are not what they appear to be and my hypothesis is that my eggs suck! We know that one of my 8 Grade A embryos from IVF was chromosomally sound as Myles's karyotype was 46XY (normal male), but who knows about the others. 1 out of 8 is terrible. With 5 miscarriages (wait is it ? the number is getting so high I'm losing count) I suspect that the embryos might be a contributing factor too. Yes, the others losses could have been due to my crap uterus as we suspected, but this is the 2nd loss we've had after cardiac activity was established (my 1st m/c was @ 12wks) and that's typically an indicator of some chromosomal problem, especially when you know that a hormonal imbalance can't be the cause and the uterus is perfect, like K's. I asked K to collect a specimen for pathology (how nice of me, hah?! as if she doesn't have enough $hit to deal with on my account) and I anticipate the news of a chromosomal mess in the poor little embryo. Yep, today I officially feel like my entire reproductive system is beyond f*cked up!

As you know J and I have plans to fly to Mexico on Saturday, but how can I go and leave K to go through this alone. What kind of person does that?

Ramblings about another impending loss

I appreciate everyone's continued prayers and for continuing to hope for this pregnancy. It means a lot to me. I have heard and do know that others have had low betas and gone on to have viable pregnancies and healthy babies. But, I have a VERY hard time believing that I'll be one of them. Things like that just don't happen for me. When something looks grim it usually ends up being just that, grim.

Last night and this morning my symptoms were/are vanishing. I no longer have the pangs in my breasts, but rather notice they are ever so slightly sore from PIO. No cramping whatsoever to speak of. I'm guessing the first day I felt like I knew I was pregnant (6dp5dt) was when my blood levels reached their peak and now I'm guessing they are on the downslide.

I'm struggling with people's suggestions of trying Lovenox, baby aspirin, etc.. I am already using all of those things. I once said in another blog post that if it's available I've probably already tried it and I wasn't kidding! The only thing we haven't pursued at this point is the "black box" immune testing (e.g., NK cells)/treatments (e.g., IVIG) that my RE won't touch with a ten foot pole. J and I discussed doing a phone consult with a reproductive immunologist to hear his/her thoughts. For $300 the RI will review our records, chat with us for about an hour, and make a recommendation. This recommendation would include any future testing and/or treatments based on those findings. We figure a consult can't hurt anything.

My gut tells me something more is going on. I wonder about the immune stuff, but I also wonder about other problems related to my lining issues. Being a biologist gives me all sorts of hypotheses of what could be going wrong. Since I keep having chemical pregnancies where the embryo is dying after implantation, I think that possibly there could be a problem with blood vessel recruitment (angiogenesis) during implantation. When the embryo attaches and begins to burrow/implant into the lining "it" sends out signals that cause blood vessels to grow to it, which ultimately supplies it's life line. So, if the embryo can't recruit enough blood vessels it will die early on. Theoretically, if blood flow to the uterus is weak (like I speculate it is with me given my linings never plump up huge) then angiogenesis could be poor. (BTW ... in my opinion this could also be connected to my early, severe PE/HELLP.)

So, how do they assess and treat this? I believe they can do uterine artery flow studies to assess blood flow before transfer, but the problem is that there isn't a treatment. I plan to discuss my hypothesis with my RE. If we did the test and it showed limited blood flow, then it might be the information that helps us decide that it's time to move on to a gestational carrier (surrogate). (BTW ... in my opinion this could also be connected to my early, severe PE/HELLP.)

I have been having the worst time with this impending loss. It makes me miss Myles even more and makes me wonder if he will be my only baby. I am struggling with my choice to seemingly "throw away" perfectly good (well superb to be honest) embryos on my horrid, hostile uterus. I'm doing this because I want to carry another baby again and I really think I need to start asking myself what is really important. J and I had a huge discussion about this last night. He doesn't find my desires selfish and thinks it's natural for me to want this, but I keep questioning my actions. If I have a willing and able dear family member and friend with a good, hospitable uterus ready to carry our babies, why don't I step onto that path?! In the end what I really want is for us to parent living children. I'm just holding onto this dream that I can't seem to let go. I have a hard time giving up the amazing experience of pregnancy. I'm jealous to think of someone else feeling my baby(ies) move inside her. I'm envious of that special bond she'd have with them that I wouldn't. I wonder/worry how things would work in the delivery room when the baby(ies) is born. The list goes on and on.

I was hoping and dreaming of getting an opportunity of having a birth story that was much less traumatic and that ended very differently. I am happy and grateful to have had my pregnancy experience with Myles. It is something that I will forever cherish. But, it's hard to think it may be my only experience. I often wonder if I was blessed with Myles to make my dreams come true. To let me experience pregnancy. To let me feel him move inside me. To let me nourish my baby with my body. To let me hold and cuddle the most amazing, most beautiful little person imaginable. To let me become a Mom and let J become a Dad. To give us the strength, inspiration and hope we would need to make difficult decisions in the future.

I often read and reread a quote that a dear friend shared with me and try to figure out what it means for me:

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes.' You must do the thing you think you cannot do." -Eleanor Roosevelt

I just wish I knew exactly what that "thing" was.

POAS #2

Many thanks for the congrats and well wishes! I appreciate everyone's continued support and encouragement!

So, being the neurotic woman I am I tested again this morning. I was hoping for a darker line to show up, but was disappointed when the line showed up just as light as last night. I'm trying not to read into this, but given my history of chemical pregnancies I'm having a hard time not. I know a line is a line, but I would expect a darker line at 9dp5dt. This makes me wonder/worry if my beta levels are really low. I still "feel" pregnant and have most of the symptoms I listed yesterday, so I'm trying to think positive thoughts.

I have my first beta tomorrow and my 2nd on Monday, but my RE's clinic doesn't call with the results until they have the 2nd beta results. However, I have the blood drawn locally at my ob/gyn's clinic. Last time I called them the day of the 1st beta because I know that legally they can't withhold my medical information from me, so I just asked them to tell me the results of my bloodwork. Of course the triage nurse knows nothing about my infertility clinic's policy, so she told me the results. I think I'll have to "cheat" and do this again tomorrow. I'm hoping for an average beta (notice I'm not asking for it all), but don't have any expectations of hearing good news. Being a recurrent miscarrier sucks and makes being hopeful very difficult!