“In the face of uncertainty there is nothing wrong with hope.” – O. Carl Simonton (1942-2009); Oncologist

I had the ultrasound today. The one where I expected to see a collapsed sac and another evident loss. But it wasn’t that ultrasound… not today. Today at 6wk 1 day I saw one small but fluttering heartbeat.. and it almost stilled my own. Today I saw evidence of two pregnancies, though at this point it looks like only one is viable. Today I was surprised.. shocked.. even silenced for moment.

Tomorrow is another day, but for today this was good. While I am not yet in any position to shout anything from the rooftops or to celebrate per se, I am grateful. Grateful for a chance, for a shot, for a little flicker of hope. I am more grateful than I can say for those of you that have held up that hope, the positive thoughts, love and prayers where I could not. Thank you.. for all of it. For all of this I am very grateful indeed.

The next U/S will be in about a week…

It doesn’t interest me
what you do for a living.
I want to know
what you ache for
and if you dare to dream
of meeting your heart’s longing.

It doesn’t interest me
how old you are.
I want to know
if you will risk
looking like a fool
for love
for your dream
for the adventure of being alive.

It doesn’t interest me
what planets are
squaring your moon…
I want to know
if you have touched
the centre of your own sorrow
if you have been opened
by life’s betrayals
or have become shrivelled and closed
from fear of further pain.

I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

I want to know
if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you
to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations
of being human.

It doesn’t interest me
if the story you are telling me
is true.
I want to know if you can
disappoint another
to be true to yourself.
If you can bear
the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.

I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.

I want to know
if you can live with failure
yours and mine
and still stand at the edge of the lake
and shout to the silver of the full moon,
“Yes.”

It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away.

I want to know
if you can be alone
with yourself
and if you truly like
the company you keep
in the empty moments.

Had beta #3 today. Did it double? Fuck no. What did I expect really? It should have been 1832 but it was only 1522. I know there are countless stories of people who have successful pregnancies with betas that don’t double, but personally I’ve never seen that to be the case for my own uterus. For me the pregnancies that start low and fail to double at some point all end the same damn way. And I’m just so over it.

I’m tired and worn out. It has been years of trying now and all it has culminated in is the the death of a precious baby boy and a heap of miscarriages both before and after his death. It’s exhausting on every level and it fucks with your head in ways that very few people (except those who have lived it) could ever truly understand. I don’t understand how the hell I got here. I don’t understand why my body has chosen to completely betray me on so many fucking levels. It’s soul crushing and defeating and it sucks the life out of you.. literally. I am a shell of the woman I once was and I feel like there are days when I can’t even recognize the person that is standing here.

So that’s it for now. I’m not doing another beta next week.. I have an ultrasound on Friday which will help make a determination one way the other, though I feel like I can give a very accurate reading of which way it will end up. Again.

I have missed over the past year due to grief and infertility. It’s hard to look at life and realize how much all of this can change you. It all piles on top of itself in a heavy uneven mess. A scattered life. A shattered life. A life that still bears hope and beauty.

My grandmother’s funeral was Wednesday. I was not able to attend her funeral because of the timing of the IVF cycle which led to s some really difficult and mixed emotions. Thank you all so much for the thoughts and prayers you sent to my family and I. It truly meant a lot. I miss her, and I hope…..

IVF is winding down this week. To re-cap we had 13 fertilized eggs. By day 5 (post retrieval) we had 5 embryos that were in the lead. There were several others that were labeled as “arrested” which they would watch for growth for one more day after the transfer (viable embryos are cryopreserved one day after a 5 day transfer). On transfer day we looked at the 5 embryos which were graded from perfect (4aa) to ‘looking good’ (4bc). Not to get all technical, but the number represents quality (4 is best at my clinic) while the 1st letter is the quality of the inner cell mass (which will become the baby) and the 2nd letter is the quality of the outer cell ring (or trophectoderm) which will eventually become the placenta. A is highest and C is lowest. So we had 2 4aa’s, one 4ab, one 4bb and one 4bc.

We were supposed to have decided how many we wanted to transfer by the time we got to the office.. though I thought that was something the RE weighed in on more heavily. In reality they let you decide between 1 or 2 embryo’s- lesson learned! So of course we had all but ignored the white elephant in the room all weekend long and walked into the clinic totally unprepared to make the decision. About an HOUR later we finally decided. Two embryo transfer. It took talking to the RE, the embryologist, and a few random nurses in the hallway. The statistics were what led the decision. A SET (single embryo transfer) yields an average pregnancy rate of 45-50%. A double embryo transfer increases the odds of pregnancy to around 60%. The risk of multiples with a SET is 1-5% (based on the risk of identical twins which for some reason happens more often in IVF pregnancies). The risk of multiples with a double embryo transfer goes up dramatically to 30-35%. It’s a big risk, but a double transfer increases pregnancy rates fairly significantly. In the interest of full disclosure most RE’s prefer SET’s as they bear a much lower risk of a high risk multiples pregnancy. My RE would have preferred we go with a SET but said he would understand choosing to transfer two. I wanted to do everything I could to increase my odds of a pregnancy so we chose to go with one of the two best embryo’s ( one 4aa) and one of the lower grade (4bc). We figured that between the two maybe one will stick.

The transfer went very easily. It was only afterwards that I began a two day mini panic attack. Did I just make the worst decision ever? Why did I take a risk I never should have taken? What the fuck was I thinking transferring two!!?? Needless to say it was a long couple of days.. but eventually peace crept back in. It is going to be whatever it will be- there really is no going back at this point, so why stress over it? I know I can see that now, but I assure you it was not visible a few days ago.The day after the transfer I got a call from the embryologist regarding the fertilization report. One of those ‘arrested’ embryos caught up and we ended up freezing 4 embryos  with grades of 4aa, 4ab, and two 4bb’s. I panicked even further because if the ‘bottom of the barrel’ sped up and became a good looking freezable embryo, chances are good that the 4bc we transferred has more of a shot at sticking than I originally thought. This is where I repeat the aforementioned mini meltdown.

During all of this insanity my bestie Meesh came to visit for a week so she was privy to my mini mind fuck meltdown. She just left today and I miss her like crazy already! Come back Meesh!!! I also spoke to my other bestie N, who talked me off a ledge a few times over the past few days. I love my besties!!!!!

So that brings us to today where I am, as we say in the world of TTC, 11dpo- aka 6 days past a 5 day transfer (6dp 5DT). I PROMISED myself that I would not test until the morning of beta day- which is Thursday (beta’s are the blood pregnancy tests). I have no clue why but for some reason I decided to check on Saturday and see if the trigger was out of my system. I got a faaaaaint line so I figured it was still residual trigger. Tested again Sunday- the line was darker. Not trigger. Trigger’s don’t get darker 12 days after you take them (they may linger but they decrease the intensity of those lines instead of increasing them).  This morning I took another HPT and the line was daaaark- almost as dark as the control. So it looks like it worked for now. This is where I need to remind anyone who reads here that this is just one step in a VERY long process. I have a seriously fucked up OB history which includes three early miscarriages in addition to Cullen’s stillbirth.

At this point it is a waiting game. I need to take it step by step. Simply put, a positive test does not equal a viable pregnancy and a viable pregnancy does not equal a living baby. That’s just life and it is unfortunately my reality. I promise you I am not trying to be a pessimist, but more of a realist considering my history. For now I’m following these steps: 1- see if the beta on Thursday shows a good amount of HCG in my blood. 2- If it does, see if it doubles every 48 hours (it didn’t in my miscarriages, but did with all 4 of the other pregnancies). 3- If it doubles, have an ultrasound to see if the pregnancy is in the right location (ie- my uterus- not a tube). 4- If it is in the uterus there will need to be a healthy sized gestational sac(s), yolk sac(s) and fetal pole(s) (yikes!). 5- If those measurements look good, have another ultrasound to see if there is a heartbeat(s) (YIKES!).

And it goes on from there.. day by day. Step by step. But it’s a start, so I’ll take it.

I haven’t been doing a very good job of keeping up to date with this IVF cycle have I!? I feel like all of the sudden things have shifted into high gear (which is what I have heard is the norm from others). In the midst of this cycle’s start my dear grandmother has entered her final days of life on this earth and as a result we took a trip to see her and say goodbye before I started stims. I have another post coming about her impact on my life and how much she will be missed. Needless to say it was a beautiful and sad trip all at the same time. I am so grateful to have had those days..

As for the IVF cycle things are progressing very well thus far. I have been on Lupron for a few weeks now and began gonal-f (stims) last and low dose HCG on Monday. The lupron and HCG are used to keep my ovaries from releasing the developing eggs before retrieval. Last week I had my e2 level checked to make sure I was responding to the gonal-f. I started at a level of 55 (no drugs except Lupron) and went to 255 after a few days of gonal-f which is what they wanted to see at the clinic. Today (Sunday) was another e2 and and ultrasound to see how the actual follicles were doing.

Amazingly everything was right on target. Like picture perfect. WTF!? I have actually spent a good amount of time pondering how strangely easy this cycle has been thus far. I don’t exactly have a good history with stims (see my fucked up previous failed cycles) so I expected a shitload of IVF drama to ensue at the exact moment when I got all Zen and shit. Hasn’t happened. And I am certainly NOT complaining! Everything so far is right on schedule and all the dates are lining up just as they were planned over a month ago. Weeeeird. But good. As of today my e2 was good (I was so chill that I FORGOT to ask the number!) and I have somewhere in the neighborhood of 8 or more follies on each ovary. The plan is to continue my gonal-f at 150iu (which is a lower dose but surprisingly suited for me thus far) along with the two other meds and do another U/S and e2 on Tuesday. By then we will be able to get another look at where these follies are at and when I will trigger (a larger HCG dose that give the follicles one last push to reach maturity before they are removed at egg retrieval). For now we targeted Friday as retrieval day so we will see if that date holds.

As for my physical comfort, that is another story. I feel pretty shitty. No better way to put it. I’m tired, achy, bloated, and my eyes burn like a motherfucker. My ovaries ache like hell from the pressure and weight of the multiple follicles. I feel very, very full. I guess that having been on stims before I never really understood what IVF’ers meant when they said that the meds made them feel so terrible. Well now I get it. It is nothing like the IUI cycles. At all. These meds make your head feel heavy and your body feel foreign. There is no exercising allowed (not that I could if I wanted to) and no strenuous activity. That said, it is NOT the end of the damn world and I can certainly take feeling like shit if the end result is a healthy pregnancy that results in a LIVING child. But I am getting really far ahead of myself.

For now I am focused on coasting through this week trying not to worry too much about hyperstimming and all of the other shit that could possibly hit the fan. So far so good. Let’s keep it that way, eh?

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work.  It means to be in the midst of those things and still be calm in your heart.”  ~ Unknown

I came across this post on another woman’s infertility blog a few months ago. Lately I have been looking back over the past year and evaluating how much my emotions surrounding TTC have changed. When Cullen was born I wanted to be pregnant again. Immediately. If I could have gone home from that c-section and gotten right back into another pregnancy I would have done it.. and I know how crazy that sounds. The sense of urgency was completely overwhelming and it engulfed every aspect of my life that was not already drowning in the debris of grief. As the months passed and I fell pregnant again I really thought I was ready, and I was certain it would work. When the pregnany ended I felt as though my heart had been ripped from my chest once again.. albeit in a very different way from Cullen’s death. The need and the urgency were there circling like wolves. I raced against myself towards a conclusion I knew I could never control but still fought for.

I’ve been fighting ever since. I fought through the diagnosis, the medicated cycles, and the IUI’s. And I really thought that IVF would be the biggest battle I would wage against myself in this journey. But I was wrong.. and that is something I didn’t see coming.

Right now for some reason known only to the universe (and I know that it may well only be right now) I can read the quote above and say with honesty that, as it relates to IVF, I am present in this state of mind and I could not be more surprised about it. Maybe it is because I have been chasing my tail for so many months. Maybe it is because I have probably pushed myself past the point of normal mental exhaustion and therefore there is just nothing left to worry about. Maybe it is because I went with the multi-cycle refund program. Maybe it is because I know that even if all this crap fails, there will always be adoption. Maybe. I don’t have an answer or a reason but I can say that tonight, on my first fully medicated evening of this IVF cycle, I am calm. I don’t have any control over how this is going to play out. Everything may line up just right and go beautifully. Or it could all fail and fall to shit, but either way it’s not the end so what is there agonize over? It’s going to be whatever it will be. I’ll take the peace for tonight.. knowing full well it may all change tomorrow. For now I fell all zen and shit about this whole process, and I really hope the feeling lasts- come what may.

My p4 levels (progesterone) were over 20 today so all systems are ‘go’ to start the Lupron injections tomorrow morning (woot!). It looks as though we are going to stick with the original timeline of starting my stims (the drugs that should send my ovaries in hyper-drive and hopefully force them to produce a lot of eggs) on October 17th. While stimming I will have serial e2 level checks along with ultrasounds to follow the growth of the follicles. We then have the ER (egg retrieval) tentatively set for October 28th and the ET (embryo transfer) tentatively set for November 2nd based on the goal of a 5 day blast transfer. After that it’s 48 hours of rest and a everything crossed for a positive beta (pregnancy test).

So what the hell does all of that mean?

As promised I cut and pasted together (read- somewhat plagiarized from my clinic’s info. and mixed in my own explanations where appropriate) an ‘IVF primer’ that I hope will explain some of this bat-shit crazy terminology (did you get the Halloween reference)? And now for your reading pleasure:

IVF (Lupron Protocol): In-vitro fertilization is a process that involves the administration of medications that stimulate the development, growth, and maturation of eggs on the ovaries. This process of egg recruitment typically starts with a medication called Lupron which helps control the menstrual cycle by decreasing the body’s production of Follicle Stimulating Hormone (FSH- the hormone that stimulates the growth and maturation of follicles which contain the eggs for each monthly cycle ) and Luteinizing Hormone (LH- the hormone that causes the body to release the dominant follice(s) in a each monthly cycle). Note that in a normal, unmedicated cycle a woman will typically have one lead follicle each month of her menstrual cycle, however the goal with IVF is to create LOTS of them so that more eggs can have a chance at fertilization and transfer. After the Lupron is administered for 12 to 14 days we then start the administration of injectable medications (aka: stims) to stimulate egg development.

The egg development is followed closely with a combination of ultrasound monitoring and blood work (e2 levels measure the amount of estradiol/estrogen in the blood stream- the higher the levels, the greater number of mature follicles). When the eggs have reached optimum maturation (typically after 10 days of medications/stims) human chorionic gonadotropin (HCG) is administered to start the sequence of ovulation. HCG gives the eggs one final boost to help them mature before egg retrieval. Approximately 35 hours after the HCG administration the patient is given anesthesia and her eggs are harvested from the ovaries with a needle that is guided by ultrasound.

After the eggs are removed from the ovaries they are placed in culture media designed to mimic the conditions of the fallopian tube (where fertilization typically takes place) they are then combined with sperm. The resulting embryos are nourished in an incubator that is maintained at precise temperatures to mimic the conditions in the human body. Embryo development is observed assessing embryo morphology (the overall form), cell count and speed of growth. At the appropriate stage of development the embryos are placed into the uterus through a procedure known as Embryo Transfer (ET). Transfer occurs at either 3 days past retrieval (8 cell stage) or 5 days past retrieval (blastocyst or blast transfer- 140 cells).

So to summarize- you take a bunch of injections for a few weeks, go under mild anesthesia to pull out a bunch of eggs, toss them in a petri dish and mix them with some swimmers, watch them grow in the incubator, and then put the good one(s) back inside the uterus.  Science is fucking amazing isn’t it? I’m SO jiggy with it… nah nah nah nah na na na…

I saw the movie tonight and I really, really liked it. There were a lot of scenes that I felt connected to simply because they dealt with the fear, isolation and anger that comes with any unexpected medical diagnosis. In one scene that struck me the main character tells his therapist how angry it makes him when everyone around him is telling him how ‘everything will be alright’. He loathes hearing platitudes about how he will beat the odds, and that all he needs to do is ‘x,y,and z’. His frustration and anger become evident when he explains that all he really wants is for someone to say ‘You know what.. you have cancer, you are fighting death and quite frankly it sucks.’ Not nearly an exact quote, but you get the drift.

I remember thinking the same thing when I was in the lowest points of my grief after Cullen’s death, and in the days before the bone marrow biopsy for the PV diagnosis. I just wanted someone to acknowledge how horribly off track my life had gotten and how awful it felt. I think I needed the mirror image of my own feelings in order to form a sense of validation for my grief and my loneliness. The hardest thing to hear in those dark times was ‘It will all be alright”. Strangely enough those words made me feel more alone than anything.. and I was dealing with something completely different from the struggles of this character.

I wanted to share some of what I found in an interview with the screenwriter Will Reiser (the movie is based on a slightly fictionalized version of his own story) as he talks about his writing and advice for someone who has a friend with a serious illness:

“My advice is to just be the person’s friend. Something I saw a lot was people have this sort of impulse, this hero’s complex, where people feel like they have to save their friend, they have to do something. It makes sense because you’re in this very scary place of not knowing, where there’s so much uncertainty and your friend is mirroring back your own fears, your own mortality. It all comes from a great place where you really want to help and do everything but it gets so overwhelming. People came to me with so much advice and at a certain point you just check out.”

“People get really scared. I had friends and people really close to me and they ran away. I think that’s just an inability to communicate. People are so scared by it they don’t know how to talk about it so they don’t say anything. But I think it’s a far healthier thing to look at yourself and identify the fact, yeah, I don’t know how to deal with this. I’m going to tell my friend, “Honestly, this is scaring me. I don’t know how to deal with it. I’m sorry.” Just laugh at yourself. Looking back at it in the process of writing this movie, working on it with Seth, it was like, yeah, we didn’t know how to deal with it. The way we did it was we laughed about not knowing how to deal with it. No one’s going to deal with it the right way and I feel like if you can just give yourself permission and admit you’re not going to deal with it the right way, it immediately helps the situation.

I think these lines can also relate to helping support someone through grief- or any difficult time for that matter. So much of grief and illness are linked by the same feelings and emotions. I know we can’t always find levity in every situation, but lately I have come to realize that sometimes it’s there hiding beneath the surface.. we just have to find the right person to help us discover it.

I got approved for the ultra mega Costco sized (thanks K) IVF program. I guess the good thing is that if they see my horrendous obstetrical history as an actual contender in a program that will refund 70% of my money if I fail to bring a baby home from the hospital, I should go all in. Roll the dice and see what happens. Either I bring a baby home alive or I recoup some of the money and move to an adoption program. Looking at it that way, it’s definitely a win win. The end result is a new human being coming into our lives.. and in honesty I don’t really care whose uterus he/she comes from just as long as that heart beats strong and steady. For like 100 years. No pressure or anything!

I also decided to post a pseudo ‘IVF primer’ here on the blog so that those of you reading here will not feel completely lost in medical jargon every time I post. Lets face it, searching Dr. Go*ogle every time you read a post can get kind of tiring so I’ll do my best to help out. I promise to keep it sky level because quite frankly, unless you are the patient in question, learning each and every technical detail of IVF can be kind of mind numbing. Hell, sometimes it’s even mind numbing for the patients too! More on that later though…