Sunday, February 10, 2019

Collateral Damage- Part 2

It was a beautiful wedding.  A warm perfect summer evening in June.  A small group of beloved family and friends.  A heartfelt exchange of vows framed by rolling hills and a small lake.  A hopeful start to a wonderful life.   Happily ever after. 

Fast forward 3 1/2 years, and we're fighting again.   This time about a new car he wants us to buy.   I want to hold off for a few months. Donor egg is on the horizon-a huge cost.  The car would eventually become my main car, so I want to be involved in picking it out, but I’m overwhelmed at the thought of making several big decisions at once.  We have to pick a clinic, a program, and a donor.  I have to process through the pain of letting go of my own egg.  There is no bandwidth in my mind for anything else right now.  I want to wait until summer when the big decisions will have already been made, and we'll be moving forward with DE treatment.  Our original argument about the car eventually and predictably circles back to the real cause of our discord.   He’s upset that we‘re always stuck in a holding pattern.  That we can’t make plans or big decisions.    That we spend all available cash on treatments that never work.   He feels that we are trapped by this quest of ours.  He questions if we should stop.  I don't disagree with anything he says, but every cell in my body knows that I can't stop until my baby is in my arms.  We are at a stalemate.

This is just one of the many many fights we find ourselves in with fertility at its core.   We have fought about everything from how undesirable sex has started to feel, to work time that he has to miss for our many appointments.  We have fought about family visits that we haven’t been able to make because we need to stay near our clinic, about opportunities we have had to pass up to continue treatments, about general restrictions on our time, money, and we even argue about the stress than a new baby would bring since we have no family here and would have no money left to hire help.

It didn't start out this way.  At the beginning I was sad, he was supportive, and we were hopeful.  But this is a long journey, and we didn't train for a marathon.  We have been on the fertility roller coaster since one month after our wedding in 2015.  We started right away with the appointments, tests, grim news, stress, treatments.  Not exactly the lighthearted romantic kickoff to married life I would have liked.  Our son was conceived via IUI, and just when we were starting to find our stride as parents and reconnect as a couple we started treatments again.  What followed has been two years or living by my cycle, spending our cash on treatments, timed fertility sex, and lots and lots of changes to plans.  This fertility journey never goes the way we thought it would, so we’re always readjusting plans and expectations.  We handle the stress in different ways and have different supports.   Our feelings of loss are different.  Our moments of crisis don’t align. Sometimes it is hard to connect, even as we are both hurting.  Perhaps the worst part is that there's no end it sight, so we don't even know how long we have to hold on for and when we can hope for relief.  It’s eating away at us day by day, month by month, year by year- a slow corrosion of what we brought to the alter on our wedding day. 

My husband is a wonderful man, and I hope we’ll be ok, but I’ve seen the statistics on divorce and infertility, and they scare me. I don’t know what his breaking point it, what mine is, or what ours is as a couple.  We are in uncharted territory here, and as hard as it is to navigate survival individually, it’s seems even harder to navigate survival as a couple.  These were supposed to be our first blissful years of marriage-our honeymoon period.  Infertility took that from us, but I am hopeful that walking through the fire like this will forge an even deeper and more loving lifetime bond.  I dream of how it will be in the other side of this.  I will never be the same person I was before, and I know we can never be the same couple we were before, but hopefully we can transform into something better, richer, and deeper than we ever imagined.

Sunday, February 3, 2019

Tales from the Other Side

This summer, after three IVF cycles over a one year period with no viable embryos to transfer and my third pregnancy loss (naturally conceived), we discovered that I also had balanced translocation in addition to my age/egg quality issues.  We decided that my age combined with my chromosome issue made continued IVF a very expensive gamble that we weren't willing to take.  The odds were just too low, and the doctors were clear that donor egg was my only realistic option.  In the months that have followed I have been working on coming to terms with letting go of a genetic connection with my next baby and embracing donor eggs, but I'm still in the grieving process and I'm not quite ready to move on.  I've done some low tech IUI cycles this fall and winter, and this month we tried a medicated timed intercourse cycle.  Most days telling this story of repeated failures and broken dreams would leave me in tears, but today I feel positive and optimistic.  Why?  It's because it's only day three of the TWW.  The first four or five days are my sweet spot and I'm always pretty upbeat.  I let myself feel free to believe that the cycle was a success and that I'm pregnant.  The pregnancy test is far enough in the future that I know I won't have to face any evidence to contradict my belief.   I'm dreaming of rainbows and riding high on hope! (week two of the TWW is a different story, but that's another post for another time).

So today, I want to showcase hope and pay tribute to some of the amazing women who have helped spark and sustain hope in me during difficult times.  All of these women have been incredibly brave in sharing their moments of pain with the world in order to uplift others who are struggling.  Each woman has a unique story, and has come to motherhood in a slightly different way.  They have all made it to the other side of infertility, and are here to light a way for those of us still in the dark night of that path. I hope that in their stories and successes all  of you are able to be inspired and find strength.

1)Meet Julia Idichova.  Her story is one of conception against all odds, and she has been a strength and guide for me since the very start of my journey.  Julia's story was similar to mine: advanced maternal age, low AMH, high FSH, mother of one child yearning for a second.   Julia documents her struggle to conceive in her book Inconceivable: A Woman's Triumph over Despair and Statistics, where she tells of  being turned away from IVF clinics because of her high FSH.  Julia proceeds to explore a variety of options from IUI to  surrogacy to alternative healing experiences.  After making sweeping changes to her diet and lifestyle and lowering her FSH, she  eventually goes to see one more specialist hoping for a better outcome.   Spoiler alert: Julia was never treated by the specialist.  He ordered a pregnancy test at the first appointment and she actually discovered she was pregnant naturally.  Julia is now the mom of two grown girls, and the founder of the Fertile Heart community.  She says that her journey was, "A pilgrimage that led me to re-claim my fertility in the most awe-inspiring way", and she wants us to be able to do the same. Her website has links to her books, visualizations, a host of success stories, and much more.  Julia encourages us to trust in our intuition and to believe in the power we have within to improve our fertility.

2)The second woman I'd like to celebrate is Maya Grobel.  This woman is badass.  She pursued her dream of parenthood fiercely,  tore down every barrier she came up against, and is now the mom of a little girl via embryo donation after a 4 1/2 year battle with the infertility beast.   I recently discovered her this past week while watching the Netflix documentary One More Shot.   I would recommend watching this 100 times over.  Maya and her husband Noah allow us into their infertility struggle with so much vulnerability and authenticity that we come away inspired to honor our pain instead of turning from it in shame.   I laughed with her, I cried with her, I hoped with her, and I rejoiced with her.  In addition to her Netflix documentary she also has a blog called Don't Count your Eggs.

3)Last but not least- Camille Preston.  Camille's TED Talk: A Journey Through Infertility: Over Terror's Edge resonated so deeply with me.  Just like most of us, she "coveted motherhood at such a cellular level".  She talks about the mounting intensity of effort and energy after each failed cycle, the rising desperation, and finally, learning to surrender control.  She shared how multiple failed rounds of IVF "kicked my tail and nearly broke me".  She didn't break though- after 8 rounds of IVF she welcomed a child into the world.   Camille's willingness to jump into the depths of longing, loss, and pain helped strengthen her sense of self and opened her up to a deeper and richer life experience.   Camille is inspiration for all of us living "on terror's edge.

        Happy Sunday everyone.  Have a wonderful hope filled week!!

Thursday, January 31, 2019

A Thousand Small Goodbyes

It’s Monday morning-Groundhog Day.  I walk into my IVF clinic for monitoring, just like I’ve done countless identical mornings in the past two years.  I wonder what they think of me when I show up.   I feel like a DMV customer who has failed the road test 15 times, but keeps showing up for one more shot.  Does anyone actually think I will succeed, or am I like I the beloved but hopeless case that has just become part of the fabric of their practice?   It makes me wonder, when do we say enough is enough?  When do we move on to the next alternative?   

I think a lot has to do with the stages of grief and where we are.  Elisabeth Kubler Ross developed a framework for helping understand the process we go through when we experience loss.    Although most people think of loss as the death of a loved one, with infertility loss is a constant part of our story.  We are always letting go.  First we have to let go of the idea of getting pregnant quickly and easily.   This may lead to losing our dream of being pregnant with all our friends, of joyful pregnancy announcements, of family gatherings with our baby in tow.  Some of us have to say goodbye to having a child who is genetically linked to us.  Some of us have to say goodbye to having the family size we dreamed of, or perfectly spaced siblings who will be the best of friends.  Maybe we end up saying goodbye to the experience of carrying a child inside of us.  Some of us will say goodbye to the idea of being parents at all.  Some are grieving babies lost during gestation or after birth.   Each loss is a little death,  and all of us are moving through these stages of grief in response.   The only way out is through, so instead of fighting these stages, let’s understand and embrace them so that we can heal and move on. 

I've gone through these 5 stages so many different times with each disappointment and loss.  I've been in denial about my diagnoses and convinced myself that I would be the 1% of women in my situation who ended up with a successful OE pregnancy.   When I hit the anger stage, I seem to feel  angry at the whole world.  I get angry at the women in the news stories who mistreat their kids when all I want is to love one.  I get angry at my husband for having poor morphology. I get angry at the doctors for not having a miracle cure. I get angry at medical insurance in America for not covering endless cycles until this works. I get angry at God for abandoning me, I get angry at myself for every choice I ever made that I think got in the way of my dream of motherhood.   This is an exhausting phase for me- it's hard to hold onto anger.   The next phrase is tiring for me too. Bargaining.  I'm a master at this.  In my mind I'm always promising that if I could just, just have this baby I would (insert grandiose goals).  I promise unrealistic things like never complaining about anything ever again, or starting a community service organization.   I promise anything I think will earn me this baby I'm longing for.  Depression hits when I realize that it's not going to work.  That I have to say goodbye to whatever I was hoping for this time. Then I retreat to warm pijamas, long cries, and lots of cookies.  I allow myself to grieve, and then finally arrive at acceptance.  Of course though, whenever one fertility dream is lost, there is always a new one that pops right up to take its place, so cycling through these stages is never really done. Right now, after several cancelled cycles due to poor response,  I am in the process of grieving the loss of my own eggs. I'm working towards accepting that loss so I can get excited about using donor eggs, but  I'm not quite there yet.  Some days I feel fine about it, and other days I'm right back to denial, anger, or bargaining.  Its comforting to me  to know that these feelings are normal, that they are part of our greater human experience, and that eventually I will reach a place of peace and acceptance with however this turns out.   We all will.  We grieve, but we hope.  We fall, but we rise again.  We push on through the tears, because our babies are waiting for us. 

Saturday, January 26, 2019

Collateral Damage-Part 1

Collateral damage. defines it among other things as “any damage incidental to an activity”.   Miriam-Webster calls it, “Injury inflicted on something other than an intended target”.  Today  I want to give some time and attention to the collateral damage of this infertility process, and to mourn for some of the things that have been lost or altered in my life.

I thought I was going into this with eyes wide open.  Really.  I had read about the effects of the fertility medications on my mind and body.  I knew what kind of damage was going to be inflicted on my bank account due to the treatments.  I knew that this was going to be hard on body, mind, and soul.  I was ready.  Or so I thought.  I don’t really think that I understood how many parts of my life would get caught in the crossfire though.  I was completely unaware of the injuries that would be sustained in parts of my life I considered to be far from the frontlines of injections and tear stained pillows.  One of those parts of my life has been my friendships.  The damage didn't happen all at once.  It was such a slow shift that at first it was imperceptible.  But now, as I peruse Facebook and see smiling faces at events I didn’t attend, with friends I rarely see, I  recognize the shifts that have occurred in my friendships, and I feel a surge of anger at Infertility and what she’s taken from me.

I’ve always been lucky to be surrounded by a group of incredible ladies that I’ve been blessed to call my friends.  Even after my wedding, my first bout with infertility, and the birth of my son, I was still intentional about creating consistent, meaningful space for my friendships. When I began my struggle with secondary infertility, I didn't think that anything would be different.  I was Superwoman- I could handle it all.  I could battle infertility and be cool and fun at the same time.  We had just started treatments, and since I already had a son, I figured it was just a matter of time.  I was in good spirits, and life was still pretty close to normal. 

As the months and years wore on though, my life as I knew it slowly transformed.  With each failed cycle, I increased my focus on my fertility.  The pursuit of fertility started to occupy more and more of my headspace, and each pregnancy loss and failed cycle became harder and harder to bounce back from.  As a result the rest of my life became smaller, more restrictive, more stagnant.  Instead of being “fun” and “cool”, I felt like it took every ounce of my strength just to stay on top of what I needed to do to conceive and to feel ok while doing it.

Fast forward 2 years… Life now is centered almost exclusively on getting pregnant-.  I spend time researching fertility topics, emailing clinics, looking up donors, cooking the right “fertility friendly” foods, doing fertility yoga, getting to acupuncture, giving myself injections, running to appointments, making sure I have enough sleep to grow a healthy egg, eliminating all toxins from my life, and monitoring my cycle.  Life is at the same time so regimented, and yet completely unpredictable.  At any moment I may be in the middle of a cycle or grieving over a failed cycle (I am not fit for human consumption in those moments).  So, in order to be able to manage all of it, I’ve started turning down social invitations, and rarely extend any myself anymore.   Poor sleep is bad for my cycle so I can’t stay out late.  I have to give myself injections at certain times in the evenings, so I need to be at home those days.  Happy hours?  I’m staying away from alcohol and it’s tiring to keep explaining why I’m only having water all the time.   Meet for a mani/pedi?- I’m avoiding nail polish because of all the phthalates.  Shopping trips?  Sorry ladies, I would, but I have no money for clothes with all these IVF rounds, and besides- why buy clothes when you keep thinking you’re about to get pregnant.  Pilates and Zumba classes?  I’m laying low during the TWW, and I feel bloated and uncomfortable during stims, so I have to pass. I haven’t traveled to see out of town friends for years, and girl’s weekends or daytrips are a problem for all the reasons above.    Infertility is a logistical nightmare where I can never predict my availability, so it’s just easier to say no. 

This state of limbo also makes it hard to have meaningful conversations with friends.  I dread the standard, “What’s up?”.    When I ask my friends this question I’m treated to stories about vacations, good times with friends, date nights, kids.  When the question is directed towards me I have nothing to say, because nothing’s “up”.  I’m in limbo.  I haven’t been on any vacations, or read any great books, or started a new hobby, or hit a great exercise class, or checked out a new wine bar.  Nothing.  I’m doing the same thing I’ve been doing every week for two years.  I’m still reading fertility books and blogs.  I’m still making wheatgrass shots and green juice, and cooking fertility friendly meals.   I’m still injecting myself with hormones.  I’m still obsessing during the TWW.  I’m still crying over another failed cycle. That’s it.  I’m exhausted just thinking about it, and I don’t want to expend the energy trying to explain it to people who haven’t been there and just don’t really understand, so I just say something about how busy I am juggling work and my son and leave it at that.  It’s hard to be living a life completely consumed by infertility, and not to be able to really talk about it.  Sometimes it’s just easier to stay home, to keep my energy close, and to focus on surviving.

Don’t get me wrong- I still have good friends who allow me the space to be authentic and talk about my struggles, and I cherish them immensely.  Even so, I grieve the friendships that are becoming more distant and I miss those people who used to be a bigger part of my life.  I see many of my friendships starting to fade into the distance, and even though my mind wants to chase them and to tell them to wait up for me, I know those words wouldn’t be honest, because I have no idea of how long infertility will hold me hostage, and I have no idea what kind of person I’ll be when I emerge.  

Like it or not, infertility is a transformative process that changes not only us, but our relationships too.  Some may simply survive infertility, others may transform into something deeper, and others may fade as we move in directions.  Whatever happens, I’m thankful for everyone who has touched my life along the way. 
Thank you all for sharing this space with me tonight!  Sending good energy your way. 

"The art of life lies in a constant readjustment to our surrounding". Kakuzo Okakura (The Book Of Tea)

Wednesday, January 16, 2019

Wild Hope

It's THAT day of the month.  I look down, a tinge of red, another period- and I'm devastated.  I hate that this always hits me so hard.  I understand if I had just gone through a round of IVF and implanted a plump and healthy embryo in a clinic renowned for success.  But no such thing happened this month.  This month, at age 43, with a balanced translocation to boot, I had a cancelled IUI cycle due to poor response.   We tried on our own, but statistically speaking, the odds were far, far from in my favor.  My period should not have been a surprise to me.  I shouldn't have been so upset, but I was.

Whenever my period comes, my husband knows to give me some space to grieve, so I went up to my room, and started to think about why this is so hard for me each month.  The words that finally 
came to mind were "wild hope". That’s how I define the kind of hope that grips our hearts in the absence of any meaningful evidence that hope is warranted.  It is not a justified hope, and it is not a cautious hope.  It is a passionate desperate hope that holds tight, no matter how hard we try to shake it off, and it is exactly the kind of hope that takes up residence in my heart each and every month no matter how good or bad of a cycle we had.   Even after the worst cycles, when my rational mind clearly rejects that possibility of hope (ex. ultrasound shows I didn’t even ovulate, but maybe, just maybe...) my heart continues to hold on.  As hard as I try to play it cool and build up some emotional armor to protect me from the impending letdown, hope keeps sneaking up on me.  I can't help but hope that maybe conception happened in spite of my dismal response to intervention, that  maybe I beat the odds of age and balanced translocation, that maybe this painful journey is over.  

It’s such a vulnerable place to be, and it often just makes me feel silly to be thinking and feeling this way.  I’m a smart, rationale woman most of the time, but I feel like my mind is trying to sell me some emotional snake oil each month, and I’m buying.   Wild hope leads me to forums and websites, looking for any post or story that would suggest that there might be a happy ending in spite of whatever roadblock I've hit.   Wild hope is only one step ahead of disappointment, and I can feel it in hot pursuit.  

I’ve tried to shake wild hope in order to make disappointments easier to bear, but I can't seem to do it. So maybe I just need to make friends with wild hope. Maybe I need to set the self-judgment aside and just be ok with how I'm feeling.   Maybe my heart’s refusal to give up on this baby no matter what the obstacles is what keeps me going. Maybe love and reason don’t live in the same zipcode.   Maybe I need to make peace with wild hope, and thank it for holding on in tough times when I feel ready to give up.  Perhaps wild hope is a testament of love for my unborn child and belief that somehow, miracles DO happen.  Keep hoping wildly ladies, and keep daring to dream.

Somewhere over the rainbow,
Way up high.
There's a land that I've heard of,
Once in a lullaby.

Somewhere over the rainbow,
Skies are blue.
And the dreams that you dare to dream really do come true.

Somewhere Over The Rainbow lyrics © Sony/ATV Music Publishing LLC, CONEXION MEDIA GROUP, INC.

Sunday, January 13, 2019

Daring Greatly

The other day I was talking with someone who I hadn't seen in a couple of months.  She asked how I was doing, and in a moment of vulnerability I shared that I had really been struggling with my fertility journey.    She answered, "Oh, you're still doing that?"; but her question didn't express interest, curiosity, or concern.  Her tone of voice expressed a sense of disbelief that I was still pursuing that goal,  and suggested a touch of disdain as well.  Childless by choice, I realized that my quest must seem ridiculous to her.  So I launched into my favorite explanation- "I'm committed to giving my son a sibling.  I'm an older mom and won't be around forever, and he has no cousins nearby, so this is for him".   The conversation ended there, and she didn't ask any further questions or offer support.  This person has been far from my only critic, so this is a well rehearsed script.  When I focus my answer on my son, people back off, and show some understanding, but when I answer honestly and share that I am on this journey due to a deep longing in my heart for another child I have been met with judgment.  This comes in the form of comments that question my decision to continue to pursue this after so many years of failure, that judge me for not being "satisfied" with just one child, that suggest selfishness at pursuing fertility treatments instead of fostering or adopting, and that hint at my age.  Comments have included, "Is this really worth stressing your marriage over?",  "You should be happy that you have one",  "Two is alot of work, you're better off with just one", "I couldn't imagine having a baby at your age", "That's alot of money to spend", "When do you say enough is enough?",  "Maybe it's just not meant to be".  And don't even get me started about when I mention that I've been exploring donor egg.

In the face of criticism and judgment I go straight into shame and embarrassment.  I second guess all my choices.  I question the yearning in my heart. I put on a mask and hide from those around me.    It's not a pretty place.  While listening to a Brene Brown talk this week though,  I heard a quotation  that helped me think of these moments in a new way.  The quote is from Teddy Roosevelt, and I wanted to share it with you.

These words made me see myself and my journey in a new way.  Ladies, we are the "man in the arena".  We go head to head with infertility everyday.  We get knocked down, wounded, and dirty, but we keep getting up.  We rise to our feet and we wipe off our tears.  We "strive valiantly".  We give our all to a "worthy cause", because what could be more worthy than calling forth life?    We hope that we will succeed, but even if we fail, we will fail "while daring greatly".   We can own that effort, that heart, and that bravery with pride.  I understand that our friends and loved ones mean well.  Their comments come from a place of concern for our well-being,  but they are not in the arena with us.  They sit in the stands and offer advice and criticism for how to approach an opponent they have never faced, in a battle they will most likely never fight.  Going forward I will hold these words close.  I will do my best to shake off the criticism of my choices on this journey.  I will look around the arena and I will link hands with the other women out there; women (and some men too) who are standing strong and DARING GREATLY.    Thank you for allowing me to share these thought with you today. 

Monday, January 7, 2019

lessons from a coffee shop

There's nothing as comforting for me as a cappuccino- the smell of the beans, the warmth of the cup, the unique designs swirled onto the top.  Before trying to conceive I would regularly visit one our local mom and pop coffee shops with a book or a journal, and lose myself for a couple of hours in a state of caffeinated self-reflection.  When I started my fertility journey though, it was one of the first thing to go.  Apparently it's harmful for egg quality, and since my eggs aren't winning any awards right now, I cut it out.  I know it seems silly, but the loss of that ritual stings.   It felt like part of who I was, like it was linked somehow with my sense of self.  I often feel resentful about it, because I've given up something that brought me joy, but I haven't gotten a baby in return.  It's a bum deal.  This journey has been like that- seemingly small modifications that sometimes feel like deeper losses for me.  Just another indignity of this process.   Today though, I gave myself permission to revisit my ritual for the first time in a very long time.   I sat for hours, sipped my cappuccino, read, and journaled.  And part of my heart resurfaced for a brief moment.  It was glorious.   I think it's important sometimes, with all of our self-imposed infertility rules and regimens, to allow ourselves some moments of relative normalcy.  That way we can remember that infertility hasn't destroyed the core of who we are.  Those vibrant and beautiful parts of ourselves are still there.  Whatever the outcome of our journey, we remember that we are still there beneath the pain and disappointment.  We may emerge from this journey changed, but we WILL emerge.   Thank you for sharing this moment with me today.