How important is biology?

Coming back after our Maui vacation it was really hard to face all this again and even to come back to blogging.  For a week I felt like I was a different person and was able to take a real break from the grief and stress.   It all started right up again when I returned.  Just like before, when my mind wanders it goes straight to the grief/stress/feelings of hopelessness.  After my one week break, at least I know there is another side of me in here that can be happy and relaxed and isn’t defined by the events of the last 4 years.  Because of this I came back feeling restored with batteries recharged and much better prepared to face the ongoing and seemingly long road ahead.

So here I am looking ahead and considering our options.  Before we left our IVF doc recommended we move on to surrogacy or egg donor suggesting those as more likely to work after my 6 losses.  Shock set in, tears were shed and the fantasy of the miracle of bearing my own biological child one day died.  Since then I picked myself up and started shopping for donors and surrogates and have now entered the world of the donor agencies, screening profiles and taking stock of how much all of this stuff costs and how much just goes to the agency itself and lawyers.

On Friday (two days ago) I had a follow up with my original RE, the one I had my previous 3 natural pregnancies (via monitored cycles and Femara).  She and I have been working together now for over two years.  After seeing her so much over the years (and her seeing so much of me, ALL of me, from ultrasounds, 3 D&C’s and 1 laporoscopy, + other visits) I have a deep trust for her and I think she knows me and my body better than anyone (even me).  In our discussion she took another perspective and felt like surrogacy was maybe a bit farther than we needed to go.  She suggested looking at 5-day chromosomal testing with an IVF cycle.  The thought is maybe with 5-day testing we could actually get more embryos than we did with the 3-day testing we did for our first cycle.  According to the research, some that look abnormal on day 3, may look normal on day 5 and vice versa.  Of course, this raises the question of why didn’t we just do 5-day testing the first time!  Our IVF Dr. seemed to think the pros of doing a fresh cycle outweighed the cons of the 5-day test that requires freezing.  So here is the plan, we are moving ahead with another cycle with 5-day testing.  PRAYING for lots of embryos.  If we get 4 we will put 2 in me and leave the others for a surrogate.  The beauty of frozen (if we have any that survive) is that we don’t have to decide everything right now.  However, if we only get 2, I might not want to risk them being implanted in me. Or maybe we will find out the embryos are all abnormal and won’t waste time on a surrogate.

Meanwhile we met with a surrogacy/egg donor agency on Saturday.  It oddly gave me a lot of optimism about our options if we want to go that route.  We started talking even about egg donors.  That process is so much less expensive and more manageable compared with surrogacy.  Also there are way more donors.  Both my IVF doc and my RE seem to think that maybe I can’t carry MY embros, but there is a chance that maybe it would work with a donor.  the reasoning is that we tested positive for something called DQ-alpha.  My husband and I have a high match (we aren’t genetically different enough).  Because of this (the theory goes) my body doesn’t recognize the embryo as a baby (which triggers a pregnancy response) and instead thinks it is a strange part of me and kills it off.  If that is the case either egg donor or surrogacy would solve it.   Surrogacy is a safer bet, but a way huger deal.  It all comes down to what is more important, the genetic relationship or the pregnancy/birth experience.  So that is the choice swirling in my brain right now.  I have little information to go on to make the decision and very few role models of people who were successful with either one after recurrent loss.  In fact for recurrent loss I am only familiar with two outcomes- miraculous inexplicable success that just randomly happened OR adoption.  Do you know of any other outcomes?  Also I don’t know of any cases of egg donor or surrogacy successes.  They are rare enough, but particularly rare after recurrent loss.

Meanwhile I am praying that I will get inexplicably lucky and have success without having to make this choice.  Don’t we all pray for this?  I don’t know anyone else who was debating between these two.  Normally you have one issue or the other and the choice is that or adoption.  Mr. Star is still squarely against adoption leaving me to choose one hard thing or another.  Tomorrow night is our wedding anniversary (8 years!) and we are spending it appropriately at the Stanford Seminar- “Options for Building Families” which explores all these third party alternatives.  It is perfect for us because we are basically exploring them all.  I am going to make a leap and guess that all the panelists are happy with their decisions and love their children.  I’ve never heard anyone say I wish I hadn‘t adopted or used an egg donor, etc.  I think when the baby arrives and the bonding starts your brain responds and you really are genuinely thrilled with the outcome.  Hopefully a healthy does of amnesia comes in as well helping you forget the pain you experienced getting to that point.   In a way I feel like whatever works in the end is what was meant to be and I will be genuinely happy with whoever the child is that results.  In the meantime I struggle with having to make difficult choices of what path to take, hoping for the one that after such a long journey leads us to the shortest and least painful path.

Modern Family: Baby on Board

Last night Modern Family took a big leap that won me over.  When I saw the episode title “Baby on Board” I thought, oh no, this is going to be another one of those sitcoms that makes having a baby look so easy.  The previous episodes hinted that Cam and Mitch were expecting a second baby, but completely glossed over the how part.  I figured they could gloss over this as they had that TV magic that causes babies to appear at the perfect time whenever the plot needs to introduce one.  The same magic that misleads impressionable naive viewers like myself  (pre 2008) into thinking that we too will be able to have a baby easily when we want.

I love the characters Cam and Mitch and I did want their dream to come true, but it seemed totally unrealistic for them to be having such an easy time adopting, twice!  The first baby arrived with almost no explanation as to what they went through.  I figured it was just my bitter infertile side coming out, so I chose to let the episode unfold rather than give in to my cynicism that gets in the way of me enjoying baby/birth-related TV episodes.  Resigned to see yet another couple have a happy ending, even if it seems unrealistic, I found myself totally surprised when the episode took a turn.  As Cam and Mitch were waiting as the birth mother gave birth, out of nowhere the grandmother appears and tells them in Spanish that the adoption is off and she is going to take care of the baby instead, rather than give it to strangers.  What?  Is this the cute and fuzzy sitcom I’ve come to know?  How could they build up the arrival of the new baby and then leave Cam and Mitch empty handed like that?  How could they build this perfect picture and then tear it down?  I was sad for the characters, but I found myself cheering inside.  Seeing mainstream TV characters crying in despair about how hard having a child is and how this just keeps happening to them was incredible.  I felt for that moment that they were speaking for me and for a moment validating and normalizing my everyday crazy talk.  At the same time it disproved the misperception/lie that adopting is an easy plan B as implied by the common phrase non-IFers like to give ” why don’t you just adopt?”.  Maybe after seeing this episode one less person will give that terrible unwelcome advice.

As they were describing their agony I felt for that that brief moment like the mainstream world acknowledged and recognized the grief and frustration of what setbacks to family building feel like.   Adoption loss, pregnancy loss, infertility- those of us experiencing these things can all relate to being angry, sad, frustrated, stressed out and beat up by this exhausting and demanding process that seems to take everything we have.  Ultimately I want to give kudos to the writers for forgoing the easy crowd pleasing baby arrival and keeping it real.  You guys get it.

LIT in Mexico, really?

We had our first meeting with the Immunology Treatment doctor today.  I had some issues with the doctor who seemed to be repeating a lot of things we had already heard before and at other times going into great detail about things that we didn’t need to be concerned about.  It seemed like he hadn’t read our records before the meeting which was also off putting.  In the end it sounds like most of our tests came back normal.  He found my natural killer cells were “slightly elevated” and recommended a intralipid infusion to treat it.  He seemed to think IVIG (the really expensive treatment wasn’t necessary).  I was happy with his suggestions that seemed quite reasonable, until he mentioned the last treatment, lymphocyte immunotherapy (LIT).  The treatment takes white blood cells from Mr. Star, washes them and then later infuses them into me.  Here is a fuller description of what it is-lymphocyte immunotherapy (LIT)

It sounds scary already, but the extra fun part is that it is no longer available in the US.  His recommendation was to go to a clinic that they partner with on the US border with Mexico.  I met someone in my RESOLVE support group that did just that.  We all sat on the edge of our seats as she described her experience in disbelief.   I assumed it was for infertility because her issue was that she couldn’t conceive even after IVF and they seemed at the end of the road having tried for 5 years and willing to try anything.

I can’t believe this is what is recommended for me, twice!  Meanwhile we are paying a lot of money for all these tests and for the consultation with this doctor to tell us this stuff.  I would really like to get a second opinion on this, from someone with experience with using immune therapy to treat repeat loss.  I just didn’t feel confident in him.  I also feel really weird about the whole Mexico thing.

I feel like I can’t really talk about it with anyone because it sounds so crazy.  I can’t find much information about it online either.  How safe is it?  Is there any research showing it helps?  The one study I found showed that patients with/without the treatment had the same rate of success (which is what my RE told me long ago).  I am really curious why they stopped doing the treatment in the US.  He claims it exists in other countries, and I have seen evidence that they do it in Europe and Asia (London and Japan, esp.), but  it seems so questionable to do something so out there.

So here I am, feeling a bit stuck on what to do next.  I could try this crazy thing (assuming Mr. Star is up for it) and move forward, or I could just try again the same old way, or maybe we should just throw up our hands and adopt or get a surrogate.  I really don’t know at this point.  With the exception of the one couple from my support group that did it (and they later had a miscarriage after 5 years of not conceiving) I don’t know of anyone else who did, and more importantly anyone else who had any success with it.

It’s Mr. Star’s birthday so I will try hard NOT to dominate our big dinner out at Red Lobster talking about this.  Yes, of ALL the restaurants in the San Francisco Bay Area, Red Lobster is his favorite and where he always wants to spend his birthday.  The funny thing is, the closest one is in Milpitas a good 25 minutes away. Meanwhile there are top Zagat rated gourmet restaurants so close by.  I have to wait until my birthday for those though ;  )

After today’s consultation I was just ready to throw in the towel and say we are at the end of the medical road, but somehow a few hours later I’ve cooled down.  I’ve reminded myself of my gay friends and their kids and how if they can do it, one way or another so can we.  It will happen somehow, just not sure which way at this point.

Missing B-RPL

We had dinner with some friends last week and when the conversation turned to how they spend their free time they both said “Oh yeah, we had so much fun BK.  Those were the days…”  “BK? What does that stand for?” I asked naively.  The other couple responded “Before Kids!”.  “Oh” I responded and just sat there with my mouth shut unable to jump on the sympathy bus.  Both couples had come up with a fun acronym to describe their carefree lives before they had children.  How cute, right? (Insert finger down throat.)

I am not in their shoes, so it’s easy to judge.  I find myself in my own version of this nostalgia.  Let’s call is B-TTC or B-RPL or B-IF.  I find myself so nostalgic for the days before we started trying and miscarrying (pre-Jan 2008).  I long for my naive days before I learned what blighted ovums,  D & C’s, and missed miscarriages were and before I felt like a reproductive failure.  Those were the days!  Back when I thought things were going to be normal and fine.  When I remember those days I see myself so differently, so confident, optimistic and energetic.  I wasn’t aware of this at the time (naturally).  Now I find myself so cynical, negative and anti-social.  When I see photos of my self or have memories of myself I find myself calculating and asking, was that before the RPL started?  B-RPL memories seem to have this happy carefree glow about them.  My lens on life permanently changed as a result and I can’t help but have nostalgia for B-RPL…  Anyone else find them self longing for memory lane?

On another note I wanted to share something that really inspired me.  To this day this is the BEST I’ve ever heard at a commencement and one of the most inspiring speeches period.  No unnecessary words are used and each story is completely authentic and personal.  (Jump to 7:30)  I thought it was just me or the day I heard it, but I’ve since seen it at the top of the rankings for best commencement speeches.

(And yes, he gave the speech B-RPL so I get that happy glow too.  This was the speech at Mr. Star’s grad school commencement.)

Steve Jobs, Stanford 2005

What are you, Barren?

This article in the Huffington Post about the social stigma of childlessness caught my eye.

What are you, Barren?

I really was taken by this statement:

“whereas barrenness used to connote a divine curse of biblical proportions and sterility an absolutely irreversible physical condition,” infertility today “connotes a medically and socially liminal state.” You’re neither here nor there. As a result, infertile men and women are often viewed as medically, psychologically, or societally disadvantaged: “socially suspect… disabled by virtue of their childlessness.”

What it gets at is this difficult to describe feeling of shame and embarrassment being childless has brought up for me.  I find myself dreading big social gatherings with peers with children, feeling ashamed and embarrassed as people avoid the white elephant in the room around me and awkwardly avoiding the question “How are you? What is your news?” from old high school and college friends (who can too easily reach me on Facebook).   I love how these questions come from friends with ultrasounds for profile pics,  Geesh!   Do I really need everyone from my past getting updates on my problem and gossiping about me?  I decided I’d rather be mysterious and say nothing.  That way people can talk all they want, but they don’t have anything to go on.

How do you handle the social hurdles and awkward, often embarrassing feelings that come up with IF and RPL?  Does anyone have a creative way to handle the social stigma of being “childless”?

Loss, grieving and gratitude during miscarriage and infertility

I was really inspired reading The Port of Indecision’s Post: Lessons from a drag queen about gratitude during infertility and the misperception that gratitude for the good things in life can’t co-exist with the painfully real desire to start a family.

I too have noticed how infertility and miscarriage get downplayed and even dismissed as “not real” medical problems.   Often when the topic comes up in mainstream conversation it’s downplayed and seen as not a big deal.  It’s not as if we have something terminal, right?  What I hear (and read on comment boards online) is, that we shouldn’t be so upset, there are bigger problems we could be facing.  After all, people can live without having kids, they say.  It’s not a like missing your legs or losing a vital organ.

On the one hand I find myself guilty of thinking this way.  I know I have a good life and it feels almost greedy to want more.  I have good health (all working organs and limbs), a loving husband, a well-paying steady job (despite the odds in a terrible economy), and we live in a perfectly comfortable home that we’ve been able to keep (despite foreclosures all around).  We are really lucky and I do feel very, very grateful, every day.

What hurts is that sometimes people use these gifts against us.  As if somehow we have “enough” and wanting a baby too is somehow not being grateful.  If you don’t believe it check out some of the really cold comments people post in response to online stories about celebrities with infertility.  As if being rich and famous cancels out this problem as a real problem deserving of sympathy.

Several of my single friends who are my age and still looking for a mate have outright said that I don’t have a real problem, like they do.  I see their point and I don’t want to compare pain so I generally just avoid talking about it with them.  I accept they don’t get it, and that complaining makes me seem ungrateful for what I have.

My other friends, the ones who have young kids, are often so wrapped up in the challenges of parenting young ones that they can’t see another perspective.  The message I hear from them often is “Look at US, don’t you see how HARD parenting is?  How could your problems be anywhere near as difficult?”.  In a conversation with Misfit Mrs. recently we joked about how we’d gladly trade places with these folks.  The invitation would be – “Sure, I’ll take your infant for a while and you can try having a few miscarriages instead and see how you feel…”.  I hear so often from new parents about how HARD parenting is.  I get jealous of how they can casually joke about it openly and how all the mommy talk actually opens doors for them to bond with other parents like a built in support network. Meanwhile I feel like noone talks about just how hard NOT parenting is.  Not just that but how hard it is to not be able to talk about it openly either.  It is by far the hardest thing I’ve ever done.  I had NO IDEA just how painful and isolating and socially destructive this was going to be.  Before we started TTC I was fine, but once the failures started (esp. after the second miscarriage) I was in a world of hurt I’d never known before.  Sometimes I find myself nostalgic for those pre-TTC days when things seemed so much more normal and I could actually talk openly with people about the problems in my life without feeling judged as a freak or as a hopeless self-consumed victim.  I feel surrounded by people who just don’t or can’t get it.

People who haven’t tried (yet) or have had no trouble having children just don’t understand how this could be painful.    For them the dream of parenting is either still a real dream ahead of them, or has already been realized (or maybe not a dream at all in the cases of people who have decided they don’t want to have children).  For those of us struggling in this space, each setback- a miscarriage, a failed IUI or IVF, cancelled adoption or other bad news is a personal loss.  It is the loss of a dream and the loss of a huge part of our drive for living as we look to the future.

With miscarriage they say that the length of time of the pregnancy often is a way to determine the length of the grieving period.  The idea being that losing a baby at 8 months is harder than losing one at 3 weeks.  The truth is really  much more complicated.  It’s not just that you lost a baby, it’s that you lost a dream, the dream of being a mother and having a child.  Chances are you had that dream LONG before you tried to conceive.  Likely it started with childhood playing house and later influenced who you dated and married (someone you may have thought would be a good parent). The dream of parenting drives so many things, the neighborhoods we choose to live in, houses we choose, school districts we consider- all things that came into mind before trying to conceive.  When I hear younger people talk about “when I have kids…”it reminds me how I used to talk this way too.  RPL took that kind of talk away from me, the dreaming, optimistic part.  I can’t use the term “when” anymore.  I’ve changed to “if” and I am still struggling to create and embrace this new picture of my future- the if we have kids future, and the if we don’t future.

My point in all this is that IF and RPL are about loss, loss of something real.  Even if our lives aren’t at risk, our modest dreams/drive for living may be.  When someone loses a child, noone says to that person- you can live without kids, at least you still have your spouse, job, house, etc.  When their child died so did their visions for their future with that child- seeing them celebrate their birthdays, graduate from school, get married, etc.  Those dreams and hopes die for that parent when they lose the child just like they die for us when we fail to have one.

Updated “About Me”

I’ve updated my “About Me” section.  It’s more about me and less about miscarriage.  Enjoy!

SF Bay Area Event: Options for Creating Families Seminar

Stanford Fertility is offering their “Options for Creating Families Seminar” on Tuesday, March 22.  If you are in the SF Bay Area I encourage you to check it out.  They haven’t posted it to Stanford Fertility Website yet so I am just trying to help spread the word.  It is wonderful evening of couples sharing their stories of how they used alternative methods for achieving a family.  Panelists discuss their experiences which include ovum and sperm donations, adoption and surrogacy.  What really got me was how positive the couples were who shared.  It was inspiring to see couples who have gone through so much and had to make difficult choices look back and be so happy about their lives and where they are today.  It’s a reminder that the how isn’t so important once you have your child.

One thing that I am fascinated with but didn’t see on the list is embryo adoption.  A woman in my repeat loss support group is in the process of doing that.  She mentioned that it will save her money over adoption or egg/sperm donor as you can get multiple embryos. When I asked her how this saved money she clarified that with multiple embryos they can have multiple babies for the price of one donation.  “We want to have a large family and we want them to be related” she said.  For some reason this statement blew me away.  Here she was struggling to build her family and she was confident enough to look ahead towards three or more children.  What an inspiration!  Here I was thinking having even one child would be a miracle.  Sure I’d love more, but as time goes on my expectations have dwindled, and I was feeling like I had to just settle for 1.  Two at this point sounds like asking for the moon.

Here are the event details:

Options for Creating Families

March 22nd  6:00-8:00 pm
900 Welch Road, suite 200
Stanford Fertility and Reproductive Medicine Center
Cost: $25/couple or $15/person

This special event will focus on learning about the different options for family building, including:

• Ovum Donation
• Sperm Donation
• Adoption
• Surrogacy

Meet and listen to the journey from woman and couples that have chosen these paths.
The evening is designed to help patients contemplating 3rd party reproduction to embrace optimism and learn more about what is involved in the various avenues for family building.

Formal presentation will be made by:

Penny Donnelly, LMFT, RN, director of support programs at Stanford’s Fertility and Reproductive Medicine Center, has developed and led a number of counseling and health education programs for patients seeking fertility treatment.  She offers private counseling to clinic patients and facilitates support groups for primary, repeat pregnancy loss, and 3rd party reproduction clients.  In addition, Penny leads and facilitates an innovative mind/body medicine program that has been nationally recognized.

To register, please email Penny Donnelly at pdonnelly@stanfordmed.org or call Penny Donnelly at 650-723-6408.

Free Resolve TeleSeminar with SELF Magazine author

I was really moved when I read the story “Breaking the Silence on Infertility ” in Self magazine story about infertility. (Thank you Foxy for sharing this link with me!)

Just recently I heard that the author will be speaking at an upcoming Resolve Teleseminar.  Here is event info if you are interested.  I plan to dial in!

Resolve TeleSeminar: “This Woman Has a Secret” on January 20, 2011 at 9:00PM ET

Guest Speakers: Jennifer Wolff Perrine, SELF Magazine and a Representative from the Centers for Disease Control and Prevention (CDC). Listen in as Ms. Wolff Perrine describes what it was like to write the ground-breaking story on infertility that appeared in the August 2010 issue of SELF Magazine. The CDC will tell you about their infertility patient resources, and learn how to turn your family building experience into action through RESOLVE’s nationwide advocacy efforts. Question and Answer period will be available. If you would like to partipate in this free TeleSeminar, sign up here.

Is there a bright side to IF/pregnancy loss?

Before screaming a resounding “no!” I wanted to just ponder this question.  I grew up encouraged to look on the bright side and make lemonade out of those damn lemons.  For example, after getting laid off I was able to look back and say that the event actually helped me because I ended up finding an even better one.   When our trip to Italy was canceled (due to our second miscarriage) I rescheduled it to something more relaxing and probably more enjoyable than I had planned the first time.  When our noisy dishwasher broke I got the excuse of buying myself one that was newer and quieter than the first.  In other words, when you hit the bumps you move on and find a way to at least tell yourself one thing you’ve gained, and you probably would have missed had you not hit the bump.    In a sense you spin the loss into some sort of gain, even a small one.  That way when you talk to a friend or co-worker about the issue you can end it with the good thing that happened as a result, even if it was a small win.

While I am able to drum up positives about the challenges in my life outside of this, I am stumped on what good there is.  How is going through something like this in ANY way making our lives better?  It just seems all around bad.  It’s not as if I can say, hey, at least this great thing happened as a result.  Instead I find myself just grateful that it is only this bad and not worse as everyone knows of another person with an even worse problem. (And yes, I know there are plenty of worse issues in life than this- like losing living family members, becoming terminally ill, etc.)

Sure, I’ve made the best of a bad situation.  In particular I am grateful for all the amazing people I’ve encountered in groups and online who have been so wonderfully honest and supportive.  I don’t think I’d love you ladies any less though if we met under difference circumstances.

I guess this may be the case for most medical issues.  When tough health issues strike, you become more aware of the fragility of life, grateful for what you have, focus more on the moment and have increased empathy towards those around you suffering with pain, loss, and hopelessness.  Potentially once you conquer this there is the gratitude that goes with it.

I guess it all goes back to the age old question of what am I learning?  What is God trying to teach me?  I read about this in When Bad Things Happen to Good People.  In the end bad things just happen and sometimes there is no good side.