Don't Count Your Eggs

The evolution of weird to different to interesting to amazing

As the post I wrote for the NYT Motherlode Blog continues to accumulate a variety of comments, it's made me think about how all this ART...stuff might be understood or misunderstood to people who don't have any experience with desperately wanting a family and not being able to create one. 

Someone commented on a former post that a lot of what happens on IF Island might seem "weird" at first or to outsiders. And I don't disagree with that. I've just been dealing with this, living with this, for long enough that "weird" has transformed into "beautiful." Not because I'm delusional, not because I'm fooling myself, but because I've had a profound four-year experience that allowed me to open my mind and my heart and re-conceptualize all previous thoughts and assumptions about how babies are made and how families are created. I have had that...opportunity, but many people have not. I wish those people could just try to be open and understanding, but sometimes they just can't. That's too bad. But I do admit that I was not always this...enlightened ;)

When we were first told IVF was our only shot to make a baby, I was horrified. The idea of injecting hormones into my body to create an unnatural amount of eggs made my stomach turn. I've always been more of a natural healing kind of gal and I am (was) terrified of needles. The idea of making a "test tube baby" was upsetting and scary and freaked me out. But the science behind it was also amazing, and if this was what we were being told was our way to a family, then the pros outweighed the cons for us. Going through IVF was mind blowing. It was painful and somehow exciting, and I started meeting more people who created babies in different ways. I met wonderful families that used various alternative family building options from surrogacy to egg donation to adoption, and suddenly the "weird" way Noah and I were having to make a baby simply became different and then interesting. 

After our first IVF cycle ended in disaster I was broken, but also curious. Curious about where our baby was going to come from. I realized Noah and I were going to really have to think outside the box. When my sister offered her eggs, I was ecstatic but also weirded out a little. Were my husband and my sister really going to make a baby?? That I would carry? What did it all mean? The initial bizarreness of the situation quickly morphed into different, then interesting, then completely and utterly amazing. Amazing that my sister would do this for us, potentially give us the gift of a family (I think for the holidays that year I gave her a $100 gift card to Anthropologie). It was amazing that we have doctors and the technology to do this. It would be amazing that our child would know how badly he/she was wanted not just by mommy and daddy, but by other people, especially Auntie. The only thing that wasn't amazing was that it didn't work.  

But perhaps I had to live through it to fully understand it. Perhaps I had to feel the intense desire for a child and the despair and heartbreak of unsuccessful attempts at creating that child. Perhaps I had to think about it and wrap my head around it and accept it and embrace it. By the time it came to deciding to try embryo donation, nothing seemed strange to me. Only beautiful. That I could possibly create a life that was sitting in a freezer for years, that might have been sitting there for eternity if our paths didn't cross--come on, that's incredible! That anonymous strangers would allow me the opportunity to be a mother--what a gift! That I live in a time and a country that allows this-- it's all amazing and beautiful. 

I understand that the unknown and different can be weird and strange, but I also know it can be amazing. It just depends on how you choose to perceive. 

The Five Stages of Grief on IF Island

I just read a comment from a fellow Islander who has been on the Island for 4 years,  been through multiple cycles and procedures, and just got a negative beta on Wednesday and can't financially afford to continue down this path. Her first line to her comment was, "It's over for me." Just like all of us, all she wants is a family. And she appears to have done everything she possibly could to try and get that. My heart goes out to you and all those who are in the moment of feeling that it's over for them. I totally understand that, and have felt that way several times along our journey.

The worst time was after the egg donation cycle with my sister. It was such a rough time and I felt like I had hit whatever the place is that comes after rock bottom. It felt over. And in that moment maybe it was. Even though I always knew Noah and I would find a way to have a family, we were down for the count for some time, because we just didn't know how we would move forward--what we could do, what we could afford, what my body could handle, what our lives and relationship could handle--it was a definite moment of being on hold. But I like to think of it more as a hold, not over. 

I've been working on a book about our journey to parenthood, and am posting a short, semi-edited excerpt from something I wrote after our first IVF proved unfruitful: 

...According to the Kubler-Ross model known as the “Five Stages of Grief,” I was clearly transitioning from anger to bargaining to depression, at warp speed.

The “Five Stages of Grief” theory states simply that there are identifiable stages that most people commonly experience when there is a loss. Though usually this refers to a death, it’s applicable here, as it is with any grief. These stages aren’t necessarily linear, and they often overlap or repeat.  I realized I’d been cycling through these stages repeatedly with every new loss.

 The first stage is Denial. This is how Noah and I put our feelings on hold to get through the Holidays with a smile. We just “tabled” the fact that we had just failed an IVF cycle, and that our chance to become parents felt slimmer than before. We pretended my body was not full of hormones, some not FDA approved, and that we had nothing to show for our efforts.  It didn’t seem real.  So we chose not to think about it, because there was nothing we could do. 

 When January arrived, I entered the second stage, Anger. Pure, overwhelming anger. We were unsure of our next step, and having no plan upset me.   I was so very full of anger,  but I wasn’t sure where to direct it.  So I found a way to pick fights and put myself in situations that could only make me angrier. Whereas anger is normal and probably a necessary step towards healing, I can tell you first hand, it sucks.

 Then comes Bargaining.  That’s what I was doing when taking that pregnancy test, what I do every time I take a pregnancy test. I bargain. If…then…I promise…I swear…please. While our embryos were dying a slow non-cell dividing death, I found myself bargaining a lot. I thought about what I “should” have done differently, and felt guilty for getting my family so invested. I wished and prayed and ultimately moved to the next stage, Depression.

Over the last two years, I’ve been in and out feeling depressed during our effort to make a family. But the depression that comes directly after a specific loss is a debilitating gloom that’s different than the cyclical sadness I’ve felt throughout this process...

I believed getting a puppy would help me enter the final stage of grief, that of Acceptance... We did get a rescue puppy, but the week we got her I had three deaths in my family and had to give the puppy up. The timing was not good. I re-entered the stages of grief for different reasons, but I did come to the point of accepting that our first and only IVF cycle with my eggs didn't work and I would have to let go of my biology. After spending a month funeral hopping Noah and I were ready to figure out the next plan. And we did. And then we figured out the plan that came after that when we had to. And then the next plan after that plan didn't work. I couldn't have fathomed any of the plans we attempted at the time of sadness coming off that first unsuccessful cycle. 

When our hearts are broken and we feel completely devastated we just aren't functioning at our usual capacity. We are broken and sad and hopeless and angry, and justifiably so. But it is in these moments that I tried to just tell myself right now I am empty. Right now I am lost. Right now there are no solutions. But it won't be like this always, and I won't feel like this always. Giving myself time to grieve and process and pause without making any decisions or judgments (easier said than done) helped me not feel all was lost and over, but that I was just falling through space and time holding the pieces of my broken heart in my hands and hoping something would break my fall. Right after another disappointment is the time that it's most important to heal and take care of yourself and your partner and not make decisions. Sometimes there comes a point where it is over and people decide to live child-free. That is a very hard decision to make but understandable for some. But other times the despair and sadness require a time-out so things can be reassessed and goals can be redefined. And out of the destruction often comes a new idea, a new possibility, a new solution.

Each situation is very different and sometimes seeking professional help from a good therapist can help with this process. I send so much love to all those feeling empty right now. All I can say is I've been there and I get it. But I also know that sometimes we are empty and sometimes we are full, and sometimes we are somewhere in-between. That's the changing nature of life and being human and that nothing stays the same forever.

 

A Happy Ending

As part of the documentary Noah and I have been working on, we've interviewed several couples who have struggled with infertility and have found their happy ending. It has made me realize that there really are many ways a family can be made, and that there is a way off IF Island. It's a non-refundable ticket to Parenthood Park. But just because a person may enter this much more exciting and joy filled place, doesn't mean all the past hurt immediately goes away. I've heard it gets a lot better, but most of us who will go on to parent after years of infertility may still have some scars. 

But there are happy endings. Lots of them. One of the couples we have been following is Candace and Tomasso. After four plus years of surgeries and procedures and tests and IVF and IVF with donor eggs and multiple miscarriages, Candace and Tomasso finally have their baby boy Max through open adoption. 

Noah and I met the couple several months ago the day before they were flying out to meet their birth-mother for the first time. After only 12 days in the "matching process," they were matched with a young woman who was several months pregnant. On the day we met, Candace was excited. Nervous, but excited. There was a light in her eyes that can only be defined as the glimmer of hope and anticipation. Tomasso was quietly confident. Tomasso is her rock. Her number one cheerleader. He always reminded her that they would one day be parents. There is something to be said about the role of the husband/partner in all of this. Tomasso's unwavering strength and solid optimism seemed to ground Candace similarly to how I feel Noah grounds me. 

I was nervous when I first met them. Knowing all that they had gone through and hearing stories of adoptions not working out, I wanted so badly for this to all work out for them. And last month it did. Their son, Max, was born around the same Candace would have given birth had she not miscarried her last pregnancy.

You can watch a clip of the interview with the couple here:

The light in Candace's eyes was different this weekend. It was pure joy with perhaps a few tiny remnants of past hurt. She's in love, and Max is an incredible little man. He cooed and fussed and smiled at his daddy who simply said, "See. I told you we'd be parents. And now we are."

Video Post: After our first unsuccessful IVF cycle

I've been noticing some comments from people who are coming off their first unsuccessful IVF cycle, and my heart goes out to all of you. I vividly remember that time for us, over a year ago. The complete shock and despair and feeling like you're circling the drain about to be totally lost in an abyss of nothingness. It sounds dramatic but it is dramatic. And upsetting. And unfair.

Noah and I have been documenting our journey (on film and in writing) to finding our family for almost two years now. The film project started before our first appointment with the RE and the intention was to document to help us process our experience and hopefully share our story with others down the line. We NEVER anticipated that this would become a full blown documentary project with our ending floating out in the horizon somewhere. My book is also now almost 300 pages and I'm really hoping to write "The End" soon. So I have lots of words and we have lots of footage, real footage, from different moments that help us remember where we've been and realize where we are now.

I get that it may not be too comforting that I'm still writing this blog years later. I know when we first started Noah and I both said we would NOT do THIS for years. NO WAY! As part of our documentary we've interviewed several couples who did different things (medical, surrogacy, egg donation, adoption) to get their baby, and many of them were on IF Island for years. It terrified us and we just couldn't fathom it. Here we are now, one of those couples, one of those survivors. And while it may not be comforting to those out there who have taken their first steps in the world of IF, just remember that I'm still standing. I'm still married to a man who I think still loves me (JK, he does). I'm still determined. But I'm not as depressed as I was, even though after several more unsuccessful cycles I probably should be. I'm just not. I know what I'm made of. I know that I can sit with and lean into the worst feelings of confusion and frustration and heartache and anger and I can come out on the other side with more compassion for myself and for others. I can sit in the crap that life sometimes dishes out and I can breathe. I can be honest and genuine in my sadness, and cry it out, scream it out, and then I can get up and go to work the next day. The strength I now know I have is something that can never be taken from me. Would I have chosen this? Hell no. But it chose me, and that's something I can't control. So I've accepted my path and have tried to make lemonade out of lemons, or whatever Noah always says when I'm crying, "why us?!"

The clip below was shot on the morning after our three embryos officially died in the dish, ending our first IVF cycle. All the feelings I thought would kill me didn't, and though I thought then that I had no more options, no more choices, I actually did. We always find a way to move forward, even when it feels like we can't even lift our foot to take that first baby step.

 

Every individual or couple has to figure out what makes sense to them in any given moment. You have to weigh the options and the cost those options will be to your body, mind, spirit, bank account, relationship, whatever. Often you have to make the best worst choice. No one wants to have to choose any of the options we are often presented on IF Island, but we do have some choices. After blowing through plan A, B, C and D, Noah and I are kind of floating.

There are moments when I feel like we'll never find solid ground again. Those are the moments where I have to bring it all back to the present moment I have. The fact that my heart still beats and my lungs can take in a nice fresh breath of air. I think about the love I have in my life and the little pleasures like that first sip of delicious tea in the morning and the feeling of total sweaty calm after a good yoga class. I remind myself it's going to be ok. I'm going to be ok. We will find our way again. We all will.

Hubs guest post: Step Away From the Vehicle

This journey through the land of infertility that we’re going through is overflowing with metaphors and analogies. We use them to help ourselves put things in perspective and to try to give the outside population some sort of reference point for what this is all like. So you’ll forgive me if I pull out the old “we’re in a car driving along a never-ending road” adage in today’s guest post.

Journey, driving, blah, blah, blah, our latest blown tire or breakdown on the side of the Infertility Highway. Maya, as you know, has long been a proponent of getting the car moving again as quickly as possible after we get derailed on our drive towards Family City. She’s amazing that way. She’s like an emotional NASCAR pit crew. Every time we have a breakdown, though, my instinct is to step away from the vehicle, to take stock of where we are and to take a moment to collect ourselves on the side of the road. Let’s catch our breaths; even for just a moment.  These have always been our differing styles of dealing and coping, not just with infertility but with major roadblocks in life. In completing our third year on this journey, Maya and I have changed and grown in huge ways, but this differing of opinions and styles shows up, unchanged, after every unsuccessful attempt at IVF/IUI/FET. I also add FML. While "FML" is not a medical term, it is applicable here.

Sometimes Maya will ask me if she wasn't the one pushing us ahead to the next event, how I would proceed. I say "hmm" as if choosing from a list of many options, though I think instead of my answer she imagines me on the couch watching Bob's Burgers reruns and half-researching IVF success percentages on the Internet. So maybe it's good that one of us is always thinking and always moving.

We keep asking ourselves how we continue down this path when one of us wants to calm down for a minute (“let’s take the rest of this year off and enjoy the holidays with our family and the friends we haven’t discarded”) and the other wants to keep driving (“I have so many doctors to call! Now!”) 100mph until we either reach our destination or the car breaks down again. What do I do? How do I help my wife step away from the vehicle? 

We will fix our car. We will get back on the road. Some how. We will not stop until we reach our destination. But, holy shit, sometimes I need to pull over at a rest stop for coffee and a pee.

Finding your happy

I had coffee (the real kind) with a friend the other day. She went through many years of fertility treatments and after 6 rounds of IVF decided to call it, so she knows and understands the deal with IF. She asked me how long we were willing to do this? How long were we willing to live on IF Island?

My answer was, as long as it takes to get a baby. 

Her next question was are we happy?

I paused. I didn't really know how to answer that. Our baseline of feeling content and fulfilled with our lives has slowly shifted to a point where happiness is being told I have enough follicles to start injecting hormones into my stomach. Happiness is the last day of shots or the first day after a successful transfer. Happiness is when I wake up and don't feel like crying because I've spent the last three years in this nightmare. 

Are we happy?

That's a questions a lot of couple have to ask themselves. Some people look at their current quality of life and the strain infertility takes on their body, mind, relationship, bank account, and lifestyle, and decide it isn't work it to keep pushing. That is totally fair and legitimate. It's something Noah and I have talked about--the potential of living child-free. Other couples white knuckle through it. They know it's going to be rough so they board up the windows and the doors and hang onto each other through the storm. It's all a very personal choice.

Noah and I have decided it's not time yet for us to step away. I feel like we've been waiting in line for a cronut for three days, we can't turn away now. But that's not the only reason to keep at it. We want a baby. We want a family. And at this point I still feel like we have the energy to keep at it. Ask me this question in a year and I might say something different.  Actually, if you ask me this question in a year I might not say anything because I'll probably be in a mental institution somewhere. Ugh.

But then we come back to are we happy?

Sometimes happiness is easy. When life circumstances align in such a way so that a person feels fulfilled in their job and relationship and family, it is easy to feel happy.  Having basic needs met, some friends to connect with, good food, a vacation planned, and maybe a stunning new pair of boots--can make a person feel pretty content. But sometimes even with all those things people aren't happy with themselves or what they have or their lives.

Perhaps happiness really is a state of mind.

Sometimes happiness is more of a challenge. When life circumstances keep handing you hard, dry lemons, it's hard to keep trying to squeeze out some lemonade. So you have to work at it. Happiness becomes more of a choice, perhaps, because there are less obvious reasons to be happy. Sometimes the lemons are sooo sour you've really got to dig deep to find a little sweetness. 

So are we happy?

I think we're learning to be.  We're learning to find happiness deep within ourselves and within our relationship. We are learning to appreciate the little things. We are learning to fully enjoy certain things we perhaps took for granted before. We have moments of laughter and we have good food and good family. There's no jumping for joy going on right now, but there are moments of happy. 

I've had to make a conscious decision to be happy, or at least work towards happy. I've had to count the good things in my life daily and remind myself that the crappy things are temporary. It's basically a full time job, but it's an important one. Maybe the most important one. 

Sending every one out there a little happy today. 

 

Good Egg Hunting

It's funny how differently I see people now, especially women. I no longer pay much attention to what a gal is doing or saying, her clothes or her shoes (I feel like shoes kind of say a lot about a person). I just focus on whether this person would make a good baby with my husband. Sounds totally perverse, right? 

At yoga class, I think, ohhhh, she seems healthy and has great skin, I wonder how old she is? At the market, hmmmmm, she's got a great smile and looks around 20, she'd make a great baby with Noah. It's crazy! I never thought I'd be standing in line waiting to pay for blueberries and checking out women who would make good babies with my husband! Never say never right?!

It's a strange thing when nothing seems strange anymore. I was thinking about all the different levels of letting go that has to happen before a person can laugh at their situation. There is NOTHING funny about infertility, but there are times when finding some humor can really help. And the ability to let go is absolutely imperative.

I've had to let go of conceiving naturally, of thinking my family would happen at a certain time in a certain way. I've had to let go of what that family may end up looking like, and I've had to let go of my own biology. I've been trying to let go of the past experiences, of the anger and sadness and losses. I've been working on letting go of the sound of my doctor's voice saying the word "unfortunately," and the sound of my own hysterical tears. I've had to let go of ideas of what could have been and what should have been. I have to still let go of feeling like no matter what happens now I'm somehow "behind" the developmental milestones of all my friends. I've had to let go of the money spent and the current limitations of our financial situation. I've had to let go of thinking I have any control over this. I've had to let go of the unfairness of living on IF Island for so long. 

When I'm able to let go and free myself of the past disappointments and the present expectations, I can really be open. I can be more open to the idea that we will have a baby, it may just look nothing like either one of us. I can be open to the additional people who may come into our lives as a result of a baby that doesn't start out with pieces of our DNA. I can be more open to the time it may take. I can be open to the idea that a family is a group of people who love each other, and a baby is a little miraculous person with tiny fingers and toes. 

I'm not saying I'm open all the time, nor am I claiming to have totally let go of all my...stuff. But the more I can try to open my heart and my mind to my story unfolding, the better I feel. I can then look at our options with an open mind so we can figure out the next game plan without panic or anger. 

Wishing all those with heavy hearts and minds some peace and love and openess this weekend. 

Never Say Never

It's hard to see the light at the end of the dark tunnel sometimes, and it often feels like there is no way things are going to work out. I've felt that, most people on IF Island have felt that at some point. It sucks. One thing I've done to help convince myself that there is in fact a light out there, some where, even if it's a tiny speck, is to remind myself never to say never.

I was once guilty of being a "never/always" gal. After some procedure didn't work out (notice how I'm refraining from the word failure?) I would find myself feeling and saying, "This is NEVER going to work out, I'm NEVER going to have a baby!" While this statement felt true, and even now sometimes feels true, I remind myself that it isn't. Never is a strong word, as is always. They are both so definite and I'm finding that things in life often aren't that definite (notice how I'm using the word "often" and "sometimes" a lot?). 

Sometimes never is true. I will never be 5'8" and have nice legs. Fact. 

I will never...gosh. It's actually hard to come up with true NEVER scenarios! The thoughts that just ran through my mind were: I will never perform open heart surgery on myself, followed by the counter thought that maybe one day I'll get into a plane crash and be one of two survivors. If the other survivor happens to be a heart surgeon whose legs are pinned under the plane and can't get to me, perhaps he/she will talk me through a procedure that can save my own life. Yup. All that just went through my head just now. So did, I'll never kill an animal with my bare hands but then I thought what if I'm stranded on an island and some scary beast tries to attack me and I have to defend myself with a homemade sword and kill the beast!? Then I thought, I'll never be a blond, followed by, maybe I should reinvent myself in the new year? Maybe not.

Never is really hard!

I hear people say, "I'll never be pregnant," and I feel that way sometimes too. And it may be true for some. There may be a physical reason why a pregnancy can't happen, and that is a huge loss. But it may take re-framing our goals to reestablish what we really want. If it's a family or a baby we want, we can get that. If the most important thing is to be a parent, it can happen. We just have to get creative.

I found myself thinking that I'm never going to have a biological child. I've been letting go of my biology for a while, because I've had to in order to move towards our goal of having a baby and a family. It's sad but I've let it go. But in my heart I don't think I'm never going to have a biological child. I think I am. Perhaps I'm totally delusional and perhaps it actually won't happen for me, but I truly believe that one day, Noah and I may be able to rub our parts together the old fashioned way and make a baby. I just do. I've been told my ovarian reserve is nil, my AMH is undetectable, the eggs are crap. Fine. But the body changes. Life changes. Things may be possible. We all have to believe that. And if there really is a definite never (again, I will never be 5'8") then we have to find our own solution (a pair of 3" stilettos).

I know the loses of what our body can and can't do is devastating. I know sometimes it feels like we will NEVER get off this Island or that we will ALWAYS be stuck in this life situation we didn't chose and wouldn't wish upon our worst enemy, but remember things change. 

Things ALWAYS change, eventually, and things NEVER stay exactly the same. 

I heart retrospect

One day, either this will all make sense, or we'll be able to look back and say, "remember when..." Retrospect is a beautiful thing in that regard. It creates our past and allows for a different perspective in our present. That's the beauty of life and time. It keeps moving forward. And with this forward movement we are left with no choice but to learn how to cope with uncomfortable feelings. How to sit with or lean into the crappy parts and how to fully enjoy the good times. 

Over the past few years I've been learning to just be with whatever situation or feeling is present. It's a difficult thing to do, because when you feel like you're up Shits Creek without a paddle, all you want to do is swim out of there. Find an escape, flag down a rescue boat, drink enough of whatever to help you feel numb to the fact that your floating along these nasty waters. If you start to sink, yes, muscle your way out. GET OUT however you can. But if you happen to just be sitting there looking out onto a sea of confused nothingness, learning to just be with it and be okay with all the feelings that come with being at this place may help you eventually find clarity. The more I can accept our path and what has happened and how I feel, the better I am at coming to terms and then calmly and creatively thinking about a solution. Can I build a paddle out of a tree branch? Can I signal the Loch Ness monster to swim by and carry me to shore so I can look back at our little rubber dinghy and think, "huh, I'm glad I'm not there any more." 

I think we have to allow a little time and space for our feelings to simmer, and I think it's important to really sit with them. Invite the feelings, however painful, to take their course so we can process them and then let some of it go. Then we can wipe our eyes, uncurl our fists, and approach the next step with courage and clarity. It's not easy, but it's doable. Maybe not today, perhaps tomorrow.

Wishing much love to all those out there floating on their own rubber dinghy. May we find the strength to be present with our hurt so we can eventually  find a way to shore.

Runaway Train

It kind of feels like Noah and I were just thrown from a runaway train that has been circling IF Island for years. It was slightly comforting to be inside the railroad car, knowing that even though the train was clearly off the tracks we at least had a conductor and a little shelter from the storm outside. Now we're standing in the bushes in the middle of nowhere wondering what just happened and how we're going to find our way out.

We were hoping that train would eventually stop and let us off at some clearing in the forest that led to a campsite full of happy families. But that wasn't where our train was headed. So instead, it's just the two of us once again, with Noah's trusty headlamp and my terrible sense of directions. 

What I do know is that we've gotten out of major jams before. I know we can make some sweet ass lemonade out of sour lemons, and that Noah is always able to keep me warm. I know if we have to make a decision between sink or swim, we're going to swim as hard as we can. And that if I don't feel like swimming, Noah will drag me to shore by my hair if he has to. And that's how you survive being pushed off a runaway train on IF Island. 

We may need to wander a bit to get our bearings. We may need to huddle under a tree for a few more days until we don't feel scared anymore. But eventually we'll start navigating our way to some place different. It may not be exactly what we wanted or where we hoped to end up, but it won't be here. 

We watched a documentary a few days ago on happiness and a quote from a psychology professor, Richard J. Davidson, stood out to me. He said, "One of the key ingredients to happiness is being able to recover from adversity more quickly." I think that's something Noah and I have been learning more than anything over these past few years. How to bounce back. 

So we'll bounce back soon and eventually find the next path we will travel down. Until then we'll work on our lemonade recipe and keep each other warm.

Post BFN Trauma Disorder (PBFNTD)

I'd like to propose a new category of trauma to the new DSM-V. I know I'm a little late in this proposal as the new DSM has already hit the shelves, but there's got to be some way to make Post BFN Trauma Disorder legit.

Because going through these cycles and getting repeated BFN's is TRAUMATIC! 

Case in point, there are symptoms of re-experiencing or re-living the awful moment of getting that phone call, of all that has led up to the phone call, of the intense anxiety waiting for that phone call. And of course the horrible flashback of the nurse saying, "Your beta was a negative, sorry. Have a nice weekend!" HAVE A NICE WEEKEND? 

There are symptoms of avoiding--avoiding certain things, people, social situations, body types (the ones with round bellies) that are reminders of the traumatic experience you've just endured. This kind of avoidance can lead to feelings of isolation and detachment...ummmm...sound familiar?

There are symptoms of "increased arousal" like crying uncontrollably, having anger outbursts, irritability and any other "excessive emotions," like the deep paralyzing fear that a family may never happen for you or the feeling of utter despair because you don't know what to do next and your body and bank account have limited your options.

There can be nightmares and intrusive thoughts, and moments of feeling totally numb. There can be distorted blame, persistent negative beliefs and expectations about oneself or the world. There can be alienation and problems concentrating. There can be physical symptoms, like feeling jittery or totally exhausted all the time.   

I think it's pretty legit. Being on IF Island is like being exposed to a chronic and persistent traumatic situation. You become totally addicted to the hope that some medical intervention is going to get you off the Island, and that hope becomes  the obsession. When that hope fails you, all seems lost. 

It's absolutely traumatic. And the trauma and feelings after a BFN are normal and make sense for the situation. But they aren't fun.

After my last BFN in August I think I was in total shock. I quickly made peace with what happened and was a little too zen about the whole thing. Maybe in the back of my head I knew we had the Lone Ranger sitting in the freezer, maybe I was in shock. But about two weeks after the bad news I had a total breakdown, as if I were hearing about it for the first time. HOW COULD THIS NOT WORK?!! It was a delayed response. Being aware of some of these things this second time around is helpful, but I must say I'm not sure where this is all headed for me.

It's a really personal experience for sure and people go through it differently. In the end we have to find ways to take care of ourselves and each other. Writing and talking about it seems to help me, because there is this moment where my present direct experience suddenly becomes the past. "We tried again, and it didn't work." Past tense. Behind me. 

This morning I woke up not looking like an amateur boxer, the way I did yesterday morning. That was good. I hardly cried yesterday and I'm not sure if it hasn't totally hit me yet or if I'm actually ok.  Time will tell. In the mean time, I'll wait for my boobs to deflate from the progesterone and Noah and I will try to come up with a list of options we have left (probably written on a post-it). 

If and when my feelings...hit the fan, as they say, I'll know it's part of the deal here and that I have to make an extra effort to be good to myself. 

The Morning After

The morning after a BFN has some similarities to other "Mornings After," in that you wake up feeling a little confused, you don't really know what just happened, and all you want to do is get the hell out of the situation. Oh, you also have a raging headache and wish you could hit the rewind button.

But this kind of morning after is also different. At least for me, because I don't feel embarrassed and I don't have regrets. Well, that's not entirely true. I regret that certain experiences turned out the way they did, but I don't know if that's really something I can regret. I regret that my sister spent her summer going through the IVF process with us because it was a lot to ask from her and it was painful for all of us, but I don't regret that we did it, if that makes sense. We can't regret things based on the end result. We knew we had to try donor eggs with her and what she showed us we the meaning of generosity, love, and family in a way that not many other sibling sets get to experience. So I guess regret isn't the right word, I'm sad that she went through all that she did and that in the end we had nothing to show for it. 

Every step of the process has been about making the best choice from a handful of crappy choices, and while the various IVF's and IUI's have given me nothing more than an extra 10 pounds around my belly, I don't regret trying. We had to try. We had to dive in head first, because this was our shot. I can only look back and know we did everything, EVERYTHING we could to make a baby the way we were being told we could, and it didn't work. No regrets. 

What I've learned is that I have more strength and determination than I ever imagined. I've learned a new language and met a new group of incredible people who are surviving this madness every day. I've learned that I have the best family in the world and the most patient, loving,  and supportive husband. I've learned that even though our baby hopes just fell apart at the seams, I actually am very lucky.

So we'll take the weekend to cry it out. In the 13 years Noah and I have been together I have waken up before him a total of four times, so the fact that I'm up and he's still in bed is a signal that he is totally exhausted from all of this. Totally, and utterly beat down. Eventually we will get back up and count what we have left. Unfortunately, it isn't much, but it isn't nothing. It's pretty close to nothing, but not nothing.

So I'll make a big cup of coffee, the caffeinated kind, and go to yoga, and slowly we'll pick up the pieces of our lives and put it back together again. Wishing all who are going through this much strength, and sending thanks to everyone for the kind words of support.

The Wrong Side of the Bed

This morning I woke up feeling grumpy. It's officially been two full weeks since our IVF didn't work and now I feel like it's time to go back to living my normal life, and it feels crappy. The first week post bad news is shock, the second week is healing, and now it kind of is what it is, and though I know I have to still be kind to myself and all that, there comes a point when I just have to get back to my life. Whatever that may look like.

Noah took one look at me this morning and said, "You have the whole day ahead of you, decide what it's going to be." I wanted to punch him in the face, but he was right. It's a balancing act. Honoring my feelings, taking into account the gloomy morning, not sleeping very well, hormones, life frustrations...blah blah blah and also deciding to be ok with where I am and what my life looks like right now. My life looks nothing like I imagined it would at 33, but it's my life and I have a lot to be thankful for.

One thing I'm very thankful for are friends that help me step out of my reality for a second. One such gal is my good friend G-Funk, who is dragging me...(taking me?) to a cardio hip hop class tonight. Me + cardio + hip hop = disaster, but I know it will be fun and will get me out of my negative head space for an hour. I can't think of anything else when I'm trying to keep up with some crazy choreography.

Those are the things I have to push myself to do right now. It's easy to be alone and to be sad. All signs point in that direction after an unsuccessful summer long adventure in IVF land. But it's just as easy to say yes to trying new things, to agreeing to tag along to a dance class, however embarrassing it may be, to get out of the house.

Nothing stays the same

It's true. Feelings, situations, ideas of what seems right, the body--it is all constantly changing. That's why hope exists. Knowing things will be different is hopeful when you're in a bad moment. It also reminds us not to grip to tightly when things are going well, thus the ever difficult challenge of being totally present and appreciative of whatever moment we happen to be in.

I've been starting to feel more hopeful about my body lately. After three years of being told it is in some way broken or defective, I have started reminding myself that it's not and it can change. At the beginning of our infertility journey I had an HSG that showed one blocked fallopian tube, and then a laparoscopic surgery that revealed two blocked fallopian tubes. That's why we jumped to IVF so quickly. Sometimes there is no getting around the IVF thing--blocked tubes are one of those things. But months later I had another HSG that showed two open normal looking fallopian tubes. What happened? They could have always been open but the first two procedures were wrong meaning maybe my body just tensed up at the wrong moment, or it could have been that something changed. Doing yoga or having my mother massage my stomach while chanting, "open the tubes," could have worked. Or time. Nothing stays the same.

So I'm going to remind myself of this every day.  When I feel sad, when I feel hopeless, when I'm frustrated with my body--nothing stays the same and good things are possible. 

Noah cut together a short clip of where we are. We interviewed each other last weekend about a week after we found out IVF with my sis as a donor didn't work. I can look back even just a week and see that I'm in a different, (slightly different) place:

 

We're going to be ok

This week I decided we are going to be ok.  And it is a decision. There's a definite mental aspect to this infertility game and that's why I had to just decide we are going to be ok. But in order to be ok I have to do several things:

1) Surround myself with people and activities that make me feel ok. For example: friends I love who get me, YES! Baby Showers, NO!

2) Wake up every morning and count five things I'm so appreciative of, including my incredible Hubs and my Vitamix.

3) Eat well. Exercise/do yoga/go for walks on the beach/do fun things/continue to live my life.

4) Be open to weird healing experiences.

Both the reiki and the shaman I met with helped me feel better. I can't say why or how, but I know that the years of running circles around myself at the doctors office made me feel  like I was drowning in some vat of medical insanity. Being touched by people with special healing powers has helped me feel like everything is going to be ok, and helped me find faith in my body again. I'm starting to believe that even though I've been told that I have Diminished Ovarian Reserve and that I should get donor eggs, I think my body can work. Maybe not today, or next month, but at some point it may. And I want to be open to that and believe in that. And if it can't work then I will be open to other possibilities. 

Today I had a pretty interesting healing experience. My friend Ter Bear (who is very much a YES friend) took me to see her "energy guy." She couldn't describe what he did or what it was exactly but she said the words crystals and energy and zap in the same sentence, so of course I was sold. We went to see this guy in a small, open office in Santa Monica. He has created this...thing called the Lifestream Generator that delivers radiant energy to re-balance the body's energy, or something. Basically there is a light beam looking tower with a crystal on the top and he touched the light beam and then touched me and I felt all kinds of zaps and buzzes through my whole body. It was a different experience, and definitely a healing one. I can honestly say that when I woke up this morning I did not think I was going to have a strange man zap me with his crystal power, but I'm glad I did.  

5) Start to develop a game plan. Tonight Noah and I are going to "story board" some options for our next move. We are going to have a family, that is not the question. The question is how. We've learned that there are many paths that lead to parenthood, and tonight we will carve a few more and then see where the road leads us. 

Healing the heart the old school way

It's been exactly a week since we got our bad news. The slow motion daze we've been living in has begun to lift and we had a long three day weekend to just be together. We tried a few things to help us move on.

We tried talking about it. About what happened, about what to do next, about money, about feelings. We tried. But we found we didn't have anything to say that hadn't already been said and we aren't yet ready to map out a game plan. 

We tried avoiding it. We went to the movies, we watched TV, we read. 

We spent some time with friends who get us. We made pizzas and talked about traveling, and for an evening we were normal again. 

Then yesterday we tried a Shaman. I'm not one for mystics and voodoo and tarot cards, but this woman came highly recommended by a trusted friend and she doesn't claim to cure illness or disease, but provides some healing through ancient techniques and with the help of the spirits. I can't get into the meanings and the history behind shamanism, because I don't know it. But I can share the experience. I was looking for a way to let go of all that had happened, with this last cycle and with the last several years of living in this obsessive baby-making world. I needed a way to feel less angry and sad and resentful and confused. I couldn't talk about it anymore. I'm a psychotherapist and value talk therapy, but sometimes it's not what you need. Sometimes we need some kind of ritual or movement or energy--something that doesn't start with sobs and the phrase, "I just can't believe this happened..."

So Noah and I went to this woman's house up in the hills. We talked about our family history, how we met, where we were at in our quest for a family, and we talked about what we really wanted in our lives. Then I laid down on her little couch and she covered my eyes with an eye pillow and started to shake rattles and chant and stomp and make bird call sounds and blow on me and brush a feather over me. It sounds crazy but there was something magical about the experience. There was definitely something magical about her--like she was tapped into some ancient native american spirits. This went on for some time and I just tried to be totally open. Maybe I've become crazy and desperate, maybe I've become willing to try anything, maybe there is some spiritual powers that a few people have access to. I don't care. When she blew over my heart I felt it open and soften and that's what I needed.

She told us a few things to do and told me that the spirits said I didn't do anything wrong. She repeated that several times and for the first time I believed it. I didn't do anything wrong. I've felt guilt about my body not working right and I know I've held onto this feeling that I have somehow failed. Even using the phrase "we failed our IVF" reiterates this feelings. We didn't fail IVF, IVF failed us. But really, it just didn't work and that's that.

I don't know what to make of our experience with this shaman, but I do feel a little lighter. I don't know why it's so hard for us to make a family, but I do know that we will find a way. Building a family is no longer about anything but determination and willpower (and I guess money, but I'm trying not to think about that part). Determination, willpower and perhaps an open heart. 

The battle continues

My Aunt Flow came to town this morning and the reality of what just happened has set in. I'm trying to convince myself that I'm a detective, trying to solve the mystery of who my baby will be. But it's starting to feel like I'm just a crappy detective who's always 10 minutes late to a crime scene, looking around going, "What the heck just happened?" 

When I'm in an IVF cycle it feels hopeful and purposeful. It's terrible, no doubt, but I do what I'm told.  Shots and appointments and medication and bed rest--whatever I am told because that's what's supposed to make this work for us. After the follow up doctors appointment when there is a failure I just feel like I'm floundering. We don't yet have the emotional health to go back to our "list of options" because the fact that we are going to have to choose between two Plan D's and one possible Plan F is really upsetting. 

The outside world starts to creep in and I don't want to be around anyone, yet I don't want to be alone. I often come back to the writings of Buddhist Nun Pema Chodron when I feel that way. There's a passage in her book, When Things Fall Apart, that I read over a few times last night:

   "Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and they fall apart. It's just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy."

I know that nothing stays the same forever and that I can be sad for as long as I need, but that we will move on. I've been reading all of the comments and feel so grateful to have this online community and to hear stories of people finding their ONE GOOD EGG. I also feel the heartbreak of that first failed IVF cycle that some of you write about--it's the worst because that first time you really feel like there's no way it could fail. You pay all this money and go through all this pain and you think this is the solution. It's all terrible.

Yesterday I consulted with another doctor I saw for insemination a while back. I called him to tell him what had happened and to ask his advice on a few things. He said something like, "Infertility is a war you have to fight over and over. It's a battle and you have to be a warrior because you will win. In some way, you will win." I'm making him sound more poetic than he is but that was the gist. We are warriors. And every day we go to battle when we face the world, when we make the best decision out of a handful of crappy choices, when we accept our path and draw lessons from our experiences, when we love our significant others from the deepest and most honorable places of our hearts, and when we never stop playing detective in the search for our family. 

It's just not our time yet. He says.

The air in the house feels different. It's a lifeless quiet, yet our sadness feels heavy, like there's a third person following us around. Noah and I don't really know what to say to each other. I'm eager for a plan. He's eager for a break. So we talk about what to eat for dinner and predict what may happen next on Breaking Bad. We watch Giants highlights in bed and wish the team was playing better. We both go to work and it feels like our minds are in a fog. Nothing really matters.

He says it's just not our time yet. I guess. 

I think we're still in shock. 

I want answers. I want to know why and how this happened. I want to know what's wrong. I want to know when our time will finally come. I try to remember what life was life pre infertility and can't. What was my obsessive brain filled with back then?

One thing that's really keeping me going is all the support out there. Anyone with happy endings against all odds, finding that one good egg, please write in! Some of you have already and we appreciate it. It helps knowing anything is possible. 

Today between clients at work I'm going to research a shaman that comes recommended, a Mexican healer that is in town for only one week and already has a list of people lined up to see her, and countries we can escape to. Fleeing the country is all I can really think to do right now. But it's not going to happen this minute so instead I'll make a piece of toast and decide what shoes I'm going to wear today. Life goes on.

Hubs guest post: Always Keep a Diamond in Your Mind

There is a Tom Waits song I really like. As with most Tom Waits songs, the lyrics are from another realm and are often useless to try to decipher. In that voice that is straight out of my childhood nightmares, I hear, "always keep a diamond in your mind / wherever you may wander, wherever you may roam / always keep a diamond in your mind." Since we did our embryo transfer (click here in case you need a refresher video), that line has been stuck in my head. The chance to have a baby, while risking multiples, has been the diamond in my mind, the beautiful goal. I've believed. I've been positive. I've hoped and prayed to any and all that will listen. This morning I arrived at work feeling confident that I'd get a call from a tearful wife saying that we were officially pregnant and one step closer to our family. Instead I got a call from a tearful wife. "It didn't work," was all she had to say.

For the rest of the day I was numb. Numb the way you feel after there's been a major catasptrophe or a death in the family. The volume was turned down on the rest of my day, replaced with nothing. I was numb while trying to do creative for a television show. I was numb in Los Angeles traffic. I was numb when I embraced Maya. I was numb during our drive back home, the only sound in the car coming from my sobbing wife; crying like she was trying to run out of tears. Two blocks from home, stopped at a light, I noticed a sticker on the car in front of me. "No Bad Days." Temporarily, numb was replaced with rage. Then back to numb.

For those of you that know me - if only through this - I am not the most emotional person. But today was different. Today I feel broken and I know I can't do that right now. One of my best friends from home told me today, "take care of yourself so you can take care of Maya." I'll process this later, I just want her to feel better now. Or at least not feel worse.

If there is a positive to be taken from this, it is that both Maya and I are becoming more comfortable talking about this process. We've had family and friends who have been critical of Maya opening up on a forum like this, but I know it has helped her. And whatever helps, is fine with me. And with this communication comes messages and tweets and texts and hugs. We sat in bed tonight marveling at how perfect strangers from around the world have been thinking of Maya today, praying for her, wishing her well. It made me cry. And my tears are normally only reserved for World Series victories. 

So thank you to every reader and every comment on here. And thank you for thinking of my wife. She needs it. I hope we'll have good news to share in the future. And, if you've got the time, I recommend picking up that Tom Waits song.

 

Picking up the Pieces, again. #BFN

My Beta just came in. Negative. We can't say it was a lack of effort. We've did everything we could, coming up empty handed feels utterly unfair. But this really isn't about fair and unfair. I don't know what it's about. Timing? Luck? The Gods not being on my side? My karmic debt? My biology? My sister's biology? It is what it is. So now what? I can't even think. Maybe I'm in shock. I thought this was it. The ending of this chapter and the beginning of a new one. I am the fool once again.

While I don't know why this didn't work or what we are going to do next, I do know that I have one chance to live my life fully. There will be lots of sorrow and lots of happy moments. And that's what it is. Today and possibly for the rest of the week, month, maybe year, I will have to piece back together the pieces of my broken heart. But I have a heart and it's still beating so I have to do what I can to move forward. 

Thanks for all the support and love. Sorry to disappoint. 

Post IVF body dysmorphic disorder

After one IVF and two IUI's, both with maximum meds, I looked like a manatee. A manatee that accidentally swallowed a buoy. As much as I tried to give myself the benefit of the doubt--I had just been injecting crazy amount of hormones directly into my stomach--it was hard not to let that get to me. After a few weeks, the puffy look went down as I slowly inched back towards my normal weight, but the feeling of being bloated and heavy kind of lingers. I can't tell if it's in my mind or around my waist. 

I still feel bigger, I am bigger, and it's just so unfair that not only did feel awful during all of this but I looked...not so good. (Notice how there is no video accompanying today's post? I'll spare everyone). I've tried not to be vain and have convinced myself it's ok not to look and feel my best during this time, but three years!? Enough already. 

With all the yoga I'm doing I'm finally starting to feel strong again. I still have the layer of persistent chubs, but it's not about that. It's about feeling strong and solid and good. It's so hard to have a loving relationship with my body these days, but I'm trying, because it's important. Hopefully it will be a house to our baby soon, so I have to do my best to take good care of it and be kind to it. When I look in the mirror I have to remind myself that it is not a manatee starring back at me, but a determined mother-to-be who will go to any lengths, look like any sea creature, to try and make a baby. 

Video Clip Friday: Sex Ed for Grown Ups. My how much we've learned

It's amazing to think about how much Noah and I have learned. About the human reproductive system, about our bodies, about ourselves, our relationship--we both have Ph D's in the physical, emotional and relational science of assisted baby making. We may have done better with graphic design or computer science or something but here we are.

When we started this process we literally knew NOTHING. Well, we knew the basics. Now Noah and I can confidently identify all of my lady parts and know their function and what happens when they dysfunction. I'm sure this impresses all the guys when Noah goes out for boys night.

While I (and half a dozen doctors in the greater Los Angeles area) have gotten to know my body on an intuitive level, Noah too has gotten to understand me better, as well as himself. For a shy guy, infertility really cracks everything open. He is so much more comfortable with the weird and gross and private, and I think that's a good thing.

I remember the first time he had to give a "sample." He was mortified and embarrassed. There is something really shaming about the whole experience. Even though doing his thing into a plastic cup is something he has been preparing for his whole life, the emotional and mental aspects of it can be unsettling. But now it ain't no thang. This is what he has to do to help us making a family. And if he ever complains I just remind him of all I have to do and he quickly shuts up. He has the easy part. 

This clip is from the very early morning of our aspiration where the doc was retrieving the eggs from the follicles. As you will see, even though we were very deep into the IVF process, I still had no idea what was where in my body. Sex ed class in high school failed me terribly, only teaching how NOT to get pregnant. 

 

Survivors Part 2: Changing the goal post from getting pregnant to making a family

I've know Lisa for about six years, but for the last year she has become an integral part of my support team. She just gets it. And when you're going through all this infertility stuff, it's important to have people in your life that get it. All of it. 

Noah and I interviewed Lisa and David before we did our first IVF cycle. They had been through everything. IVF, miscarriages, donor eggs, surrogacy, adoption. Everything. And more importantly, they are sane, happy, successful people with two great sons, one who is adopted and one who was conceived through donor egg/surrogacy. 

As Noah and I continue to try and navigate this world, I often go back to this conversation with them to remind myself that we will have a family. That the goal is not just about getting pregnant, but it's about having a family. That we need to find ways to live and be happy, even though it's hard to escape the anxiety and frustration of not knowing how or when this process will finally come to an end. 

 

Questions for Hana. Donor Eggs Phase 1

Last night, I completed the Donor Screening Questionnaire with my sister. Eleven pages of verifying that she doesn't have West Nile Virus, smallpox or the vaccine for smallpox that may have a scab that "separated spontaneously", or any other strange disease. My favorite question was question number three: Have you engaged in sex in exchange for money or drugs in the preceding five years? If it happened in high school, no big deal, but in the last five years--we need to talk.

My sister Hana answered the questions quickly, but always caught on when I threw her a curve ball, like, would you rather eat a slug or be locked in a room with snakes for 15 minutes? She wouldn't entertain me. My sister is much more serious than I am. 

Completing the questionnaire was step one. Step two was blood tests, which she also did yesterday. Before I got off the phone with her I said, "So we're really doing this?" Statement and question. 

"Yeah, I want to," she replied. And that was that.

I've been thinking about this process a lot, especially since Noah is finally coming home tonight and we can really talk about how we feel about moving forward. I feel that we've done everything we could at this stage, physically and financially, and now it's time to move on. I'm ok with it. Today at least. But I do wonder if maybe we should also start the adoption process, just in case my sister's eggs don't work. I'm always thinking ahead.

But I think I know what Noah may say. That we're not there yet. That for us, rather than pursue everything at once, we've taken more of a one step at a time approach. So that's what we will probably do. 

I think it's fair. Noah still has a chance at his biology, and I would like the experience of carrying a baby, even though it won't be my biology. If it doesn't work, we try something else.

I found this clip of Noah talking about knowing this process takes time and often several attempts bcfore getting what's known in this world as a "take home baby." This was shot on aspiration day during our IVF cycle. The doctor just gave him his sperm report, which the doctor said was worthy of being put up on the fridge. Noah was very pleased with himself, though the end result was still no take home baby. 

 

Cautiously Optimistic

It’s the day before our second IUI and I’m desperately trying to figure out a way to be cautiously optimistic. It feels so...tentative. It’s hope on the defense. But I suppose that’s what happens when you’ve been stuck in the bipolar ups and downs of infertility treatments. I found some footage that illustrates this emotional roller coaster, and the reason why being hopeful feels scary. Post egg retrieval, the doctor would call us early in the morning to update us on how our embryos were doing. This clip is two of those mornings:

 

The truth of our situation today is that we should be excited, because we have more follicles of good size than we did during our IVF cycle. But neither one of us feels excited. It’s a practice in just being. We know that what we have today we may not have tomorrow, and I’m trying not to be too attached to the outcome, but how can I not be?

Today Noah and I went to see Pain & Gain, because Marky Mark is one of my guilty pleasures, and brainless movies help me get through the day. Tomorrow at this time we will be wondering if his (Noah's, not Mark Wahlberg's) swimmers are finally meeting their match. And either they are, or they aren’t. And that’s science and chance and life and miracles. And again, we wait.

Insemination Proclamation

This is what an Intrauterine Insemination (IUI) looks like. Warning: It’s pretty hot: 

 

This is what finding out the IUI didn’t work looks like: 

Noah and I are used to disappointment, but more importantly, we are now accustomed to the various processes we have to go through. The first time around with any assisted reproduction intervention is scary and confusing. It involves needles, exact timing, and a variety of people in my privates. But now that we have one failed IVF and one failed IUI under our belts, we know what to expect. We know the norms, the limitations, and the language. Though we thought we would just be visitors in this land of infertility, we’ve officially become citizens. Green cards approved. We’re acclimated, assimilated, acculturated. Now how do we flee this place?

Join the Movement: HOW AM I MAKING A DIFFERENCE IN WAYS LARGE AND SMALL IN THE LIVES OF PEOPLE WITH INFERTILITY?

I decided to launch this blog during National Infertility week because I wanted to find a way to make a difference in the lives of people who struggle with infertility. For the past almost 3 years now, my husband, Noah, and I have been exiled into this world of infertility against our will, and we’ve had to figure out how to survive with nothing but a shopping bag full of hormone shots and a calendar of doctors appointments. 

Noah is a television producer. I am a Licensed Clinical Social Worker. With his film skills and my strong belief in advocacy, we started documenting our process in April 2012, a year after we started “trying.” We shot the first doctor’s appointment with a Reproductive Endocrinoloist in Los Angeles, and continued to shoot every appointment, hormone induced argument, and trip to the pharmacy right through to our failed IVF cycle. We have also been interviewing other couples, who I think of as “survivors,” who have had to be creative in building their families. Our intention is to one day share our journey to parenthood, because even though we don’t yet know how we are going to create our family, we know that we will one day be parents. I have also been writing about our experiences, but the only person thus far who has read anything I’ve written is my dad. And my dad is not currently struggling with infertility, so my words are of absolutely no help to him. They actual just upset him because he is a helpless parent watching his daughter struggle. But he is a writer who has always encouraged me to write. So now I am taking the next step and learning how to use the internet so that I can share my writing with others who feel alone and isolated on a little life raft in the terribly choppy waters of infertility. 

The archive and video posts will tell you where we’ve been. The current postings will tell you where we’re going. Our adventures in Infertility-land started in 2011.

2011 was the year we tried to start a family.

2012 was the year we failed to start a family. 

2013 is TBD.

We officially got the diagnosis of “explained infertility” when I got an HSG X-RAY that looked like this,

showing only one wonky fallopian tube. Then I had a laparoscopic surgery that looked like this,

which reveled two wonky fallopian tubes as the doc couldn’t pass ink through either tube. With seemingly no functioning fallopian tubes, we moved straight to IVF, where I learned that I also have Diminished Ovarian Reserve (DOR), and even though I ate this for breakfast and dinner for ten days straight,

my few follicles hardly responded. On retrieval day the RE got 3 good quality eggs, all of which fertilized, none of which divided properly. We closed shop in early December before transfer day $16,000 poorer. 

This year, so far we’ve attended several meetings about adoption. We’ve discussed donor eggs and I’ve been learning to let go of my own biology and embrace the possibility of having a child with less neurosis and nice legs. I’ve had another HSG because I’ve become a fan of having French Tipped balloons shoved up my privates, which surprisingly revealed TWO OPEN FALLOPIAN TUBES and with that, the possibility to try IUI (Intrauterine insemination), which is much less expensive and less invasive than IVF.  I went back on a steady diet of post-menopausal nuns pee injected straight to the belly, which led to one dominant follicle. Only one. But it only takes one—or so I hear. I did the dirty with a turkey baster full of my husband’s best swimmers and now we wait.

Wait. Wait. Wait. 

In the three years that we’ve been waiting for this to happen for us, I’ve successfully shared our challenges with everyone I know, thus encouraging friends, family and co-workers to check their eggs and start the baby making process as early as possible. The result has been the birth of 48 (and counting) babies to said friends, family and co-workers. Though I may not have helped infertile couples, I’ve become quite the fertility charm for others, helping everyone else hit that developmental milestone of parenthood while Noah and I watch from afar. As an LCSW, I’ve tried to start a support group, but I’m in a strange position because I’m both a peer and a professional. I know once I find an end to this journey and a beginning to our family my career will lead me to help others cope. Because I know firsthand that this is not an easy ride.

So in the mean time, as we wait, I can offer my words. I hope to bring some sense of connection and moments of laughter as well as helpful resources and coping tools. I hope to become a part of the online community of support and advocacy. Infertility shouldn’t be an island. With over 7 million people struggling to conceive there’s no reason to feel so alone. 

                        Thanks to RESOLVE.ORG for being such a great resource. Check out

• http://www.resolve.org/infertility101  (Basic understanding of the disease of infertility.)
• http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)

www.resolve.org/niaw

HITTING BOTTOM

Hitting bottom in IVF land isn’t when you can’t stop crying or you can’t get out of bed.  It isn’t when you try to sleep for more hours than you are awake because being awake is too painful. It’s not when you’re angry and full of rage or have semi-suicidal fantasies of throwing yourself in front of a bus so that your husband has a chance to procreate with someone else without feeling guilty for leaving you.  Hitting bottom is sitting in your doctor’s office listening to him talk about the expense of a donor egg and realizing not only will you most likely have to give up on your own biology, but it’s going to cost you a shitload of money that you don’t have.  Let me rephrase that. Hitting bottom is knowing you can’t afford to make a family the only way you’re being told you may be able to.  I was too shocked and devastated to even cry, so I asked the doctor questions that had no answers to.

Why did our embryos die? Jargon about cytoplasm and nuclei followed but no real answer.

Will this likely happen again? It’s very possible. I produce so few eggs, there isn’t much to work with. We don’t know if this situation was a fluke, that had there been ten embryos, these three would have been the three bad ones and seven would have been good, or if, no matter what, they would all have been bad.

How would you change the protocol to try and secure a better outcome? No significant change. Apparently I was on a variety of meds that should have done the trick. I’m a low responder. That’s it. 

What are our choices?

Every step of this process creates a new reality, a new crappier reality. There is loss and grieving that has to be done every step of the way as options get crossed off the list. All I can do is cry and feel sad, and look at what I have left, what I can salvage of myself and my body to try to make something work. Sometimes I still feel the sadness of not being able to conceive naturally, meaning in the same room as my husband, even though we are SO beyond that now. The feeling still creeps up every so often when I’m watching the funny way he brushes his teeth or when we’re lying in bed rubbing our feet together. The possibility of having sex to make a baby is almost a joke for us now.

Now I was being told I may have to let go of my biology altogether.  That’s how Dr. N led the debrief of what comes next.  The first step is to draw my blood and have a chromosome test called Karyotype, to see if there is an issue with my chromosomes.  It’s the only test we haven’t done. It affects less than 1% of the population, and is usually done after recurrent miscarriages. If it comes out that I have a problem, that may explain why our embryos were all bad.  The next step is thinking about  an egg donor. Dr. N seemed to think this is our best shot, given the finite amount of resources we have.  He said if we won the lottery he could see doing another IVF cycle with my body and eggs, but he knows the reality that if we did that and failed, we definitely wouldn’t have the $30,000+ it would cost for an attempt with a donor egg.  

For the first time, I truly understand how our finances are going to dictate how our family is made. I knew this was the ultimate truth, but to really feel it was infuriating. If I didn’t have a chromosome issue and I did have unlimited cash, I could very likely eventually, have a child that is both mine and my husband’s. It may take a few more rounds of this hormone-induced madness, but eventually it is likely we would get one good embryo in our small cohort. I was praying for a chromosome problem so that we could have a definite answer that would knock me out of the running. Otherwise, how could I move on to someone else’s eggs without knowing if the next round of this would have, could have, produced our baby. I was more desperate for a definitive answer, some clarity perhaps, than I was for my eggs to be useable. 

I brought up the idea of using my sister’s eggs.  Hana had said she would give me her eggs, but not until her family medicine residency and her board exams were officially over, around June.  She was 29 (closer to 30), brilliant, kind, generous, and beautiful.  My sister is a better person than I am. She always means well and is thoughtful and calm and meticulous.  She saves lives every day while I am lying around at home plucking my eyebrows and eating ice cream. It’s such a conflicting feeling to be both sad about losing my own biology while at the same time feeling grateful and blessed that I have such an incredible younger sister willing to do this for us. But Dr. N said he didn’t think she’d be an ideal candidate.  She was already almost 30, she was stressed out with her job and not always eating well, which affects egg quality. She’s never been pregnant and she’s genetically related to me, meaning we don’t know if her eggs would make good embryos.  He suggested paying a little more money and going with a repeat donor, someone who has already successfully made a healthy baby for someone else. Our potential baby would have some biological half-sibling or siblings somewhere in the world. The thought of it all creeped me out. 

“Wait, stop. I’m not there yet. I’m just not there yet. With my sister, I can wrap my head around it. Some 20-year old stranger…I’m not there yet.” 

Dr. N stopped talking and nodded.  He understood. Because he does this every day, delivers disappointing and freakish news to struggling couples, the words fly out of his mouth with ease and authority. He knows what is going to give us the best chance. But my ears and my heart and my brain were just not there yet.  Not today. Maybe tomorrow.  The amount of time it now takes me to accept our new reality has become shorter. But it still takes time.  There are so many levels of coming to terms and letting go. There are so many steps between receiving bad news and gearing up for whatever comes next. I’d like to say with each situation it somehow becomes easier, but it doesn’t. I’m just less shocked.  

We are completely immersed in this new world where the laws and rules make no sense.  There are no tangible answers and no logical conclusions.  There is no sense of fairness or justice and what is truth one day may be totally different the next.  No one can make promises, and decisions are made purely on what is the best worst choice.  The baseline of this world is one of trauma and despair and hurt and loss and confusion, so that every step forward or backward is just a step in a different direction, a step towards less pain or more pain, until you get pregnant, survive the nine months, and have a baby.  Then you can graduate to a new reality that is more familiar to the real world.  But only then. All the feelings that would seemingly be normal-- resentment and fear and anger and sadness don’t serve you, but they never go away.  They just linger and then become less potent when you get a piece of good news.  Right now, good news would be that after we spend $2500 to screen my sister as a donor, she checks out and can possibly do this for us. In the context of our current life, that is good news.  In the context of life, that is terrible news.  It’s all relative.

But that’s what we’ve got today, in this moment.  In this moment I have a sister and she is willing to try and help us.  I have a husband who loves me and who has working sperm. That’s what we have at this moment.  The next may be different.

 

 

LIFE GOES ON

Going to work felt like I was coming out of rehab, telling co-workers I was “taking it one day at a time.” I tried to stay present and devised an insanely neurotic mindfulness practice of labeling everything I was feeling and doing in a given moment. Now I’m walking through the halls. Now I’m searching for my keys. I feel sad but my face looks neutral. I don’t want to be here but I am. 

I sat at my desk, staring at all my unread emails and I thought about how the only time I feel safe and comfortable is when I’m at home, alone, thinking about the day our last embryo died. I didn’t want to talk to people and hear them tell me how much they “admire my strength.” What does that even mean?!  I didn’t want to open the email that announced yet another new baby or invited me to a baby shower invite. I just didn’t want to do it. But I have to. This is life. This is my job.  This was my life and job on IVF. I imagined hell as being forced to wear a wool turtleneck and go through IVF cycles for eternity, but hell may actually be rejoining society the week after an IVF failure or a loss, and wearing a wool turtleneck for eternity.  

There is a specific moment when your immediate experience becomes part of your past. Being home in the disappointment and sadness, it was still happening. Being at work and describing what happened and saying, “I just didn’t have any embryos to transfer back in,” all of a sudden turned my present into a story. I was officially one step removed. I wondered if, like a trauma narrative, retelling my story over and over would help me feel less traumatized, as it became something I lived through rather than a reality that was constantly assaulting me. I couldn’t talk about it much; it was still too raw.  So I saw my clients and I did my paperwork, and I continued my neurotic mindful labeling. 

SEARCHING FOR OPTIONS

Noah told me not to obsess. He said we have to get some space from all of this so we could thoughtfully plan our next course of action. But when have I really listened to him? A gal can only cry so much before she has to DO something, right?

So what could I do? I couldn’t make a baby. I couldn’t get in touch with my sister who was holed up in a yurt somewhere in Mexico at a month-long yoga retreat, so I couldn’t secure a verbal pinky promise that instead of a gift card from J CREW this year, she would give me her eggs for Hanukkah. I couldn’t get any real tangible answers as to what happened to our embryos until we saw the doctor on Monday to debrief. But, I COULD look things up online, all through the day and night. So that’s what I did.

My first search was for orphanages in Ghana. Up popped an adoption agency that worked with Ghana, among other places. On the site were dozens of photographs of children from all over the world who needed homes, all of them with some kind of physical or mental disability.  I felt like maybe it was our destiny to adopt a child who needed food and shelter and love, but the scrolling photos of disabled children was too heartbreaking. I wasn’t there yet.

My second search was embryo donation or adoptions. I read somewhere that many couples who successfully conceive will donate their embryos to people who need them. It is totally strange to be carrying another couples complete baby, but then again, what is adoption? Only this way there are less legalities because I would be the birth mother and I would have the opportunity to carry. But that would be more expensive than doing another IVF round with just us! It would be upwards of $17,000! Which does NOT sound like any kind of donation! 

The third search was for grants and scholarships.  I Googled “IVF grants” and found a few. Most were state specific and required a lot of financial information. I figured we may not qualify based on household income but there were two that would be worth a shot. I bookmarked those pages and noted the application deadlines and tried not to feel like I was trying to get the IVF equivalent of food stamps. 

The fourth search was for the pharmaceutical companies that administered the injectable medications. There were a few companies, Ferring, Design RX, and Serono. Serono offered an application to apply for one free round of IVF meds and happened to be the one company that did not manufacture any of the meds I was on. 

The fifth search was for cute pictures of otters. Dailyotter.org is my personal favorite website. 

The sixth search was “IVF medical tourism” which landed me on various sites that helped book travel to different countries based on need.  Dental implants, liposuction, IVF, it was all there. There was a site that listed comparison average costs for IVF per cycle in 2009 by country. Argentina $4,160.  Austria $3,600.  China $2,400. India $3,238. Japan $4,067. Korea $1,781. Netherlands $2598. Pakistan $1618. Russia $3,400. Turkey $3,000.  And so on and so forth, until you get to the very bottom. USA $12,146. God bless these United States. I could have four chances at this in Qatar for the cost of one round here at home.  I started thinking more and more about Israel and put “re-consult with Dr. Kol in Haifa, Israel” on my to do list.  Last we spoke via Skype, I believe he said one round including meds would be $6,000. 

The seventh search was “IVF memoir” and after writing down a few titles, I decided to turn the computer off and crawl out of the IVF cyber sink-hole I was in and walk to the local library to try to find the books. 

The little local library in Marina Del Rey is a total dump.  It’s a place for the partially homeless to stay warm and read comic books.  Old men with bloody scabs on their cheeks from nicking themselves with a rusty razor.  Young tattooed tweakers using the super-slow plug in internet to check Craigslist.org for used skateboards. Borderline mentally ill women with wildly colored hair and shopping bags full of stuff looking through the video selection.  Depressing.  The library carried none of the books I wanted so I got a Walter Mosely novel and walked over to the bulk candy aisle at Gelsons to stock up on cinnamon gummy bears that make me salivate and sweat the second they hit my tongue.  

When I got home I figured I had enough of a break from my research and I went back at it. 

My eighth search was on other IVF doctors I had heard good things about to look at their success rates, to try and decide if we want to get a second opinion. Dr. N has been great and we wanted him to be our doctor, but as a consumer, it might be a good idea to get another perspective. 

My ninth search was Travelocity and Expedia in search of estimated plane costs to Israel—the possibility sinking further into my mind. 

My tenth search was “What to do after a failed IVF cycle?” but the minute hundreds of blogs and infertility chat room sites popped up, I aborted my mission and closed the window. 

THE FAT LADY HAS SUNG

Sunday seemed to go on forever. It was a gray day with bouts of light rain.  I did everything I could to distract myself, but nothing really worked. I tried to practice mindfulness, breathing in I would notice what I’m doing, breathing out I would just focus on that thing.  It becomes really hard when what you are doing is obsessing or wondering.  In this moment I have a slow growing embryo in a dish with my name on it.  That is all. I tried to tell myself it was over.  That the chance of a miracle was slim so I could start preparing to let go. We were on life support but the chances of recovery were almost nil.

  How was I going to break the news to my grandmother, who has been so hopeful and excited by modern science? How am I going to go back to work, and just go about my life as if nothing were different?

  I had a hard time falling asleep and tried to imagine Dr. N’s voice going in either direction. “Good morning Maya, good news…” or “Hi Maya, is Noah there too? Unfortunately…” When he calls, I try to decode the cadence of his voice to detect a tell in a subtle pause or inhale as his brain tells his mouth the news he must share. A momentary hint of what I’m going to be feeling for the rest of the day. His entire day is spent in a “good news bad news cycle” so he’s gotten good at covering up any hesitations or expressions of emotions.  We know he wants this to work for us. We know he understands our disappointment and our excitement.  But for him, it’s just another day at work. 

           That night we prayed. I lit a candle and rang a bell and said Nam-Yo-Ho-Rehn-He-Kyo to summon my Buddha nature. It was a Japanese prayer my mother said at different times, but often when things were not going well or for protection when we were afraid. It seemed like the right thing to do.  Noah read the Serenity Prayer out loud and we went to sleep.

            When the phone rang at 7:12am I took that as a good sign. I decided if it were good news he’d call the second he got into the office and knew what was going on. If it were bad news, he would wait until around 7:30am, guaranteeing we’d be up and expecting his call. If it were 7:30am on the dot then it was definitely bad news. I made up all kinds of arbitrary rules to the lawless land of IVF. I picked up and waited for him to talk. My brain created a crazy situation where Dr. N started saying --though it’s never happened before-- the lab made a mistake.  The other embryos in the lab that he thought were someone else’s were actually mine, and they mixed things up.  I felt awful for thinking that, but hoped so badly he would say it. Someone else was going to get bad news today, but not us.  

“Well…” Dr. N began.  I never heard “Well…” before. He proceeded to tell us our six-cell embryo was now a nine-cell embryo and should be around 100.  He said it “probably” stopped growing but he wanted to look in on it one last time at noon just to make sure.  He didn’t want to give up either. He was grasping at straws just like us. How comforting.

          “But it’s basically over,” I said.

  “It’s not looking good,” he agreed.

Convincing myself that it was a lost cause the day before was actually helpful. I was a little more desensitized. I was expecting the worst, hoping for the best. The best didn’t come. 

            I scooped up all the empty boxes of Menopur and the leftover progesterone and estrogen patches and shoved it into a bag and hid it in a little closet we have under our stairs. I didn’t want to look at it anymore, but I couldn’t throw it out.  I immediately started looking up adoptions agencies, embryo adoptions and other IVF doctors who could give us a second opinion. I started making a list of things we could do. I wondered if my sister had good eggs and when we could get them. My mind went into overdrive, trying to find something we could control, some action we could take to keep the momentum going, but in this moment there really wasn’t anything to do but peel the last two sticky estrogen patches off my back and try to scrub off the lint crud outline the adhesive had made from my clothing. 

            I’m trying to tell myself we are not at Square One. That we have more information and can revise a plan, come up with a new protocol using the experience we just had. But maybe it’s too soon to reason with myself. I feel we are indeed at Square One, back to zero. We set out to make a baby and I didn’t even get a chance to have anything put inside me to try that. It felt horribly unfair but I can’t say it was a waste, it was just unfortunate. This was our only choice for a biological baby, so we tried it and we failed. Maybe it would work on the next round. Maybe it wouldn’t. Maybe we are meant to adopt. In this moment, I don’t know. Noah says we have to put everything on hold to get some perspective, but nothing is on hold for me. Just because we don’t have an immediate game plan doesn’t give me space and perspective; it gives me fear and panic. We’ve been floating along and Noah wants to come up for air, but I don’t know how to do that, how to be normal and not drown.

            How do we regroup and move forward? How do we make a plan and process that we’ve just been spit out on the other side of this empty handed and heartbroken? I’ve known exactly what I was supposed to do for some many months, decrease stress, go to yoga, don’t drink caffeine, take herbs, go to acupuncture, inject shots, go to the doctor.  Now I don’t know what to do. I’m on self-inflicted bed rest with no good reason other than I don’t know where else to be or what else to do. I’m going to have to pick myself off the floor, get myself out of bed and rejoin society. 

            Maybe I will do it tomorrow. 

HANGING ON FOR ONE MORE DAY

Noah woke up and said, “November can suck a dick.” Then Dr. N called. 

“Well, I have good news and bad news,” he began. We couldn’t write a more dramatic screenplay if we tried. 

The bad news was that the fragmented embryo had died, or stopped dividing, or arrested—there are so many terms to keep straight.  The good news was that one of the other two fertilized eggs that were dormant yesterday started splitting and was now six cells at day three.  Huh? There were a thousand questions I had but Dr. N stopped me by saying he couldn’t really answer most of them.  We don’t know why.  We don’t know what it means exactly. Could there be something wrong with it? Very possible. Could it go on to be a viable pregnancy and health baby? Perhaps. He gave us three choices:

The first was to genetically test it to see if there was indeed a problem with it.  It was an expensive procedure (around $5,000) and may not be worth it for one single embryo. The second option was to do the transfer today, get it back into nature’s incubator and see if my body could sustain it. The risk of that would be not knowing if it was strong enough, not knowing if it started to fragment and do weird things which most likely wouldn’t take, but I’d have to wait two weeks before I’d know.  The third option was to wait until Monday to see if it makes it to the blastocyst phase, which is when it splits so much that the embryo itself looks kind of like an unused condom. If it makes it to that phase we will have more information about it.  Only a small percentage of embryos make it to this stage, so there is a risk of letting it stay in the dish. But the ones that do are more likely to produce a pregnancy. He told us to discuss it and he’d call back in 20 minutes.

  How do we make this decision? How do we make any decision? Dr. N said he would wait until Monday because he felt seeing it until then is better, but he would understand if I wanted to just get it in me and test for genetic problems later if it took.  He said if I was “comfortable with uncertainty” I may want to do this. Noah agreed with the doctor, 100%. He wanted to let it sit and not rush to put something into my body, another procedure, if it turned out to not be good.

  Comfortable with uncertainty I definitely am not.  I’m slowly learning to tolerate it because I have no choice. Life and creating life is uncertain.  But I had this gut feeling that we should just get it in my body. My body would love it and all would be OK.  Maybe our baby was just a little slow to start, kind of like his/her dad. Or again, stubborn and non-conformist like his/her mama. But thinking that maybe it was in fact a him/her scared me enough to put my desperation aside and vote with my husband. We will wait until Monday. The chances are slim, but there is still a chance, another string of hope, dental floss thin.  Maybe this was our little fighter, maybe it was just another few blows to the face before the final knockout. 

I was mad at myself for feeling optimistic. For seeing how from a story aspect this is actually really intense and obviously has to end up in a beautiful baby, or even better it could split and become identical twins, and even more ironic for Noah, twin girls, like the two stars of his reality show that drive him absolutely insane! How do I stop my brain from coming up with a thousand different scenarios? How do I convince myself there is value to the lesson I am learning in extreme patience and acceptance of the unknown? It’s like exposure treatment for anxiety—I’m being exposed to the most exhausting, emotional mindfuck and if I don’t have an aneurysm and die then I live to see another day. Bad news or rapidly changing situations will no longer startle my psyche to its core. Que sera sera.  I try to just tell myself that today we have a six-cell embryo. We hope it is bigger and better tomorrow, but it may not be, and we’ll deal with it, but I don’t believe myself. I am wishing and hoping and praying and planning and totally obsessed.  The only thing to do is distraction. Movies, food, exercise.