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 next?

I felt pretty depressed and crappy these last few days.  Sad about where I am in this path.  Looking back and wondering where the time has gone.  Pissed off at my rotten luck and my lack of answers.  We saw our RE yesterday and talked for a very long time.  This was our first visit since the D & C and she didn’t even take a look under the hood.  It was a meeting to refer us to a clinic that offers immunology testing and treatment.  They don’t do that in house at their clinic so it’s almost like we’ve hit the end of the road.  I had been planning a big ramp up to IVF with PGD but now that we have these test results (normal 46, XY, ie. healthy baby boy) I don’t know know what to do.  If we HAD done IVF with PGD, we would have implanted this healthy boy embryo and sure enough I would have miscarried it.  It makes no sense.   What does make some sense is the hope that maybe finding an issue that may be treatable with my immune system may help.  It at least has some logic to it.  We’ve ruled out all the other possible causes of pregnancy loss.  Perhaps my immune system is just rejecting my babies as it would a transplanted organ.  No research or studies is going to help.  My doctor said the only way to know what is going to work is to try it.  It’s come to this.  I figure it’s worth it.  If we are able to do these treatments and skip IVF, even better.  While I am open to anything right now, donor eggs, sperm, embryos, surrogacy, etc. I really want to give the natural biological thing a shot.

On the waiting end my hcg levels are still up there (190).  I guess if I took a pee test today it would still come up as positive.

Meanwhile my mom just emailed me something about adopting Russian orphans.  Clearly she had given up.

On a happy note we watched Cedar Rapids on Netflix (a comedy that most people missed in the theater).  Totally funny!  Tim:  “How do you make the tiger dance? Man: You gotta show them a little teet“

Who do you tell?

My parents recently forward me Wall Street Journal story: “My Fertility Crisis” by Holly Finn (excerpted from The Baby Chase).    I love that they were thinking of me, but I admit I was a bit concerned.  It sounds like, now whenever they hear a story about someone struggling to have kids they think of me.  It’s very thoughtful of them, but it makes me feel really sad to get these emails as it makes it clear that this is what they are thinking of when they think of me.  Kind of embarrassing I guess.  Even the article title freaked me out with the word”crisis” and the phrase “baby chase”.  It screams of desperation.  I guess it has gotten to this point. Yikes!  Somehow looking at myself through this lens REALLY makes me feel even worse off.  Believe it or not I actually had some optimism, but reading this story made me feel foolish for having any hope what so ever.

On another note, one thing the article did was call out the tendency to talk about this online and only online. I am completely guilty of this.  I have a lot of friends and family that know nothing (other than the obvious fact that I don’t have kids and I’m 7 years married).   They don’t know about any of the pregnancies, miscarriages or the incredible emotional roller coaster we’ve been riding for over 3 years now.  They just guess and (most likely) talk about us behind our backs with our other friends/family and noone asks us anymore (hello white elephant in the room!).  I don’t tell them because I’ve had enough experiences where I’ve shared a little and felt completely misunderstood and invalidated.  Too many people act like they get what you are going through and then start spouting advice when they have no clue.  Often well meaning friends jumped to the “just adopt” advice or “just get a surrogate”.  These folks clearly have no clue the costs and are talking out of their ass.  (My theory is they want to give you advice to solver your issue quickly to solve THEIR anxiety about it as they feel so uncomfortable hearing about a problem doesn’t have a real solution).   I find myself defending my choice to keep trying and not “just adopting” etc. and getting really frustrated (and feeling insulted) by their directing me, as if I didn’t know about these other options.

The author argues that IFers and RPL-ers should be more up front and outspoken and essentially come out of the closet about their issues as it would help dispel the myths and ultimately help raise awareness, sensitivity and understanding of the issues we face.  For this reason I totally praise those that do, but I can’t follow suit, at least not with everyone.  There are way too many people who just don’t get it and it’s a waste telling them.  Telling them is like “giving pearls to pigs” (my therapist uses this expression).  When I do tell people I really do feel like I am “outting” myself. The difference is that I don’t have a community with pride in its identity behind me.  Instead we are more like a community ruled by shame and embarrassment.  We are all here because our bodies have a disease causing us to malfunction in one way or another.  Our struggle will end one way or another when our childbearing years end and so it is all temporary which makes it seem even easier to avoid telling.

Here is her exact quote:

There’s a reason women flock online for solace. The trouble is, every woman’s experience is subtly different, and IVF success often lies in the devilish details. Beyond empathy, online message boards and autobiographical books tend to offer few useful facts. And even anonymously, not everyone is honest. Online forums are a good start, but if the conversation is contained among those already in hell, myths will continue to be told outside it.

Who do I tell?  At this point most of my good friends know (I define good friends as ones I see 1-on-1 and not just in couples or groups) and select members of my family (my mom and sister).  Co-workers, neighbors, group and couple friends are still cut out.  The Facebook community is totally out (and I’ve blocked most of my fertile friends so I don’t have to see their updates).  I figure if I don’t see them as someone who can support me or be there for me when I need a shoulder to cry on, they don’t need to be weighed down with my story.  Another way to understand it is if they don’t open up personal, vulnerable stuff to me, they don’t get to hear my story.  It’s only fair.

Who do you talk to about this?  Do you tell your friends, family, co-workers, etc.?  How public do you go?  I praise people who do go public but I admit I don’t have the trust-level (aka balls) to go all out and tell everyone I know.  That’s why I have this anonymous blog, I don’t use my real name and I pour my guts out here instead of to the people I see in person.

Thanks, Mom (I know you at least meant well)

Is it me or have we all become magnets for fertility and pregnancy horror stories?  Now that I am in this select group my friends and family turn to me to talk about all the horrors they’ve heard happening to other people.  I think it is actually intended to give me hope, but I don’t know what to make of it.  Recently my mom told me how my sister knew someone who had had ten miscarriages and then had two healthy pregnancies followed by an extra they had by mistake.  Fuck!  Is this suppose to make feel better?    Actually what resonated to me from this was that the two of them are talking about me behind my back which just made me feel all the more pathetic.  Next I focused on the ten miscarriages.  I can’t even imagine.  I thought five was enough and I can’t bear the thought that I’m only half way there.  When stories like this are supposed to lift you up, you know you are in trouble.

*Update: Sorry to be so negative.  I think I need a massage.  Check out this kitten video which made me smile.  Aw!*

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”?

Late night thoughts- twins, immunology and egg donors

I am staying up late (and should really go to bed).  I’ve had this crazy obsession all day with twins.  I am fantasizing that somehow this would be wonderful.  Everyone I know who has had twins has talked about how it’s more than twice the work of having 1.  I find myself stressing out not only about having one, but what if I want another?  Surely my child bearing age window will close before then!  With my biological clock ticking the thought of twins somehow sounded more attractive, and considering we are looking to go to IVF, the odds are slightly higher.  I think the real reason I am interested is because if we ever manage to have one child I am afraid we will be too burned out to try for another.  I also don’t think my husband (an only child) will be on board for another.  Somehow magically twins seems to solve this as there is no choice in the matter.  While you can’t try for twins, I think if we had two good embryos I would be happy with that. (until they arrive and reality kicks in)

Mr. Star came home today from his primary care doctor’s office with the suggestion to look into immunology.  He mentioned that maybe my A+ antibodies are fighting off a baby that may have his O- blood type.  It sounds a bit out there, but considering the suggestion came from a doctor it perked my ears up.  He specifically recommended taking Humira, a rheumatoid arthritis drug.

I’d considered researching immunological causes of miscarriage before, but dismissed it because both RE’s that I’ve consulted were strongly against it.  Several members of my RESOLVE group are completely on board with it, willing to try anything to get their IVF treatments to work.  One member even went to Mexico to do the controversial blood transfusion treatments in which they infuse his blood into her in an effort to cut down on her immune response against it.  I am not sure I am ready to go that far, but I am willing to do some research and consider the tests.

Specifically I am considering a consultation at the Alan Beers Center in Los Gatos, CA.  Their website is full of optimism for patients like me which I totally ate up. I’d checked it out before but was scared off by the steep initial consultation fees and lengthy new patient process.  It started speaking to me today as I totally fit  their typical patient profile.  Here is the description:

The patients that we see are an average of 38.6 years old plus or minus 2 years. They have been unsuccessful 4.4 plus or minus 2 times and are near the end of their reproductive career, bruised, abused, and often without hope. 

Hey, that’s me!  I’m 38 with 5 failed pregnancies, bruised, abused and running thin on hope.  Sign me up!  I know some studies say it is just as good as a placebo, that may be good enough for me at this point.  We have so little information and doctors have yet to find a reason why we are having recurrent losses so I am pretty open to anything.  I think I proved that by waving moxa herbs over my head and giving up cold foods and drinks like ice cream and lemonade in June/July for our last pregnancy.   What unproven treatment do I get to try next?  I wonder!

To further hedge my bets I scheduled a consultation with the Stanford clinic to discuss third party options like egg donor and surrogacy next week.  If the problem is my body or my eggs, I would like to know if/how I might be able to use third party options like these.  Even embryo adoption has some appeal at this point.  While I am optimistic there are more tricks we should try before going for third party options, I’d really like to be informed of what these options are (and how much they might cost).  My gay friends are gearing up to have their second child with egg donor and surrogate and I am a bit jealous. It sounds incredibly attractive to step out of the equation and hire someone else to do the baby carrying, esp. on days when I feel like throwing in the towel.

These are my crazy late night thoughts.  Off to bed!

……………………….

It’s the next morning and maybe I wasn’t that crazy!  My results came back from the lab as normal (46, XY).   In the message from my RE she thinks that the fact it was normal may help explain why it was thriving with a heartbeat to the bitter end.  The lack of growth may be a sign of immunology issues.  Now that she is even talking about immunology I am definitely on board (and I feel a lot less crazy for considering it).  Even though immunology is very out there and controversial I recently read some anecdotal stories that claimed it helped them. I am running out of options at this point, so I am feeling more ready to play guinea pig and explore this path I was previously warned against pursuing.

The Hangover

I woke up Sunday morning around noon.  When I opened my eyes I wasn’t even sure where I was.  I was in bed with a big headache, in our spare bedroom with Mr. Star there next to me.

“What happened last night?”- Me

“You got REALLY drunk” – Mr. Star

I felt like I was in the movie the Hangover waking up confused and trying to piece the whole night together.   Why were we sleeping in the guest room?   Why was there a tiger in the bathroom (ok… maybe not that part).

A high rolling friend of ours invited us up to a dance club on Saturday night night.  Beforehand Mr. Star and I treated ourselves to a really fancy dinner at a nearby restaurant where I pre-celebrated my birthday with some excellent food and wine.  After dinner we got to the club and met our friends at around 10 PM.  They had reserved a table with vodka and champagne and had already started drinking.  The place was SO loud I couldn’t hear anyone talking, even the people right next to me.  It seemed like the next logical thing was to drink and dance and by the end of the night I overdid it on both, but mostly the drinking.  I had in the back of my mind a plan to drink, thinking it was my reward for such a rough week.   I don’t know the last time I got so drunk that I don’t even remember what happened next.  It sounds like something kids do in their 20s, not when they are about to turn 38 (my birthday is tomorrow)!.

Mr.  Star had to recount it for me.  (Warning:  This is pretty graphic and gross, even for a miscarriage blog. )  Mr. Star suggested we leave the club after I’d knocked over some drinks while dancing.  Knowing it was a long ride home I asked to use the bathroom (probably a good call if I had a full bladder).  He waited with me and apparently there was a long wait because some couple was having sex in there.  It seems believable as there were a lot of horny couples in that place.  When they left I was relieved when it was my turn.  After that we headed to my car and we were driving another friend from the group back with us.  To my horror,  (according to Mr. Star) I talked the whole time.  This part scares me as I have NO idea what I said and she isn’t a really close friend, so it could be really embarrassing.  According to Mr. Star  I managed to not reveal any big secrets or say anything super offensive.    I even praised him at some point and went on and on to the friend about what a great husband he is.  Who knows what I really said, but I like thinking I was at least showing some gratitude to Mr. Star for putting up with me.

After we dropped her off I felt really sick and threw up and made quite a mess of my car.  Fortunately it was MY car and not someone else’s.  I remember hearing Mr. Star saying “Oh no!”.  The poor guy managed to clean up the situation and get me into the house.   Once in the house I spontaneously took off all of my clothes (also stained) and then went up to our bed where I got sick again.    Mr. Star decided to put me in the bathtub (a better place to be sick than the bed) where I basically passed out.  He says he was using the hand held shower to clean me off and keep me warm because I was shivering.  It seems amazing that I don’t remember ANY of this!  The only part I remember is that at one point he really wanted me to stand up.  I didn’t know I was lying down, but I saw his arms outstretched and gave it a shot.  He says he was trying to get me out of the tub for almost an hour.  At that point he wrapped me in robe and brought me to bed in the guest room where I found myself the next morning.

I felt out of commission for the whole day just focusing on recovering and detoxing myself (and doing laundry).  I share the story because even though it is hugely embarrassing, I really thought it was quite hilarious.  I just have to laugh at myself.   I think part of me enjoyed acting like an irresponsible teenager for a change.  Also I’ve NEVER been that drunk before, so I find it a bit funny that I waited until my 38th birthday to let out this crazy side.  Even Mr. Star thought it was really funny.  With that out of my system I think I can hold off on drinking again for a long time and go back to acting like a grown up and treating my body with some TLC.

Day After D & C and Final Ultrasound

I am feeling surprisingly upbeat despite what’s been going on.  I have to say that everyone’s comments have been SO appreciated.  This whole experience has been so surreal and having online blogging friends like you guys helps me stay sane and reminds me that we are not alone on this path (even though it often feels like we are).

All in all the experience itself was fine.  I definitely got closure.  It started with my last ultrasound.  I was surprised to see that one week later nothing had changed, there was still a sac, an embryo and a heartbeat- but it was definitely not normal and not measuring up to a normal 9 week pregnancy.  It measured only 6 weeks in size and appeared abnormally formed – not like a normal embryo/fetus should.  The heartbeat was still going in the low 90’s which really surprised me.  This pregnancy has had the best track record of a heartbeat compared to my previous pregnancies and I was amazed to see it struggling for life to the bitter end.  Although it doesn’t prove anything I did get some encouragement that maybe if we just had a healthy embryo in their that my body could actually carry it to term.  Seeing my body support even this crappy pregnancy so well, it makes me think maybe there is still a chance to make a healthy baby in me with the right raw materials from the start (ie. IVF with PGD testing first).  This feels like a big relief as I was seriously researching surrogacy thinking it might be my only option other than adoption.

Next steps are to just wait for the test results.  I am optimistic to hear SOMETHING new.  We are guaranteed to not repeat our last disappointing and un-usable test that showed a healthy female.  “Healthy female” may have been the pregnancy or it may have been me and there is no way to know, so the test was basically considered invalid.  This time we are testing my cells and the pregnancy cells separately in a more extensive test (PDG) from a fancier lab- Gene Security Network.

The other big news is I finally convinced Mr. Star to take me on a vacation!  Other than quick overnights once in a while we haven’t had a real vacation in years.  The last few were cancelled because of medical issues like this or because of Mr. Star’s grueling work schedule.    Since we want to go in the next month and are planning things a bit last minute we are struggling to find deals.  I  had dreams of going to Europe or even Bora Bora, but those require more time to plan and are much more expensive and stressful if we plan to do site seeing too.  For now I am eying resorts in Hawaii as it sounds low stress and is easy to get to from San Francisco.

Also this next weekend my friend is throwing another bash at a nightclub in SF and I plan to take full advantage of the experience now that the drinking ban has been lifted.  ;   )

Last pregnant night

I am scheduled for my D & C tomorrow and having a late night dinner to fill up before the midnight food/drink cut off (to comply with the rules for anesthesia).  I made a last  minute appointment for an ultrasound for tomorrow because I just want to see it one last time before saying “good bye”.  A whole week has passed since we made the decision to give up on it and I know how things can change in a week.  While I don’t expect a miraculous turnaround I am interested in seeing if it continued to shrink, if the heartbeat stopped, etc.  Knowing that it still had a heart beat (slow, below 90) makes me feel like it’s still kind of alive and it would just feel better to get one more data point confirming that it really is on the decline before we end it ourselves.  I know the extra ultrasound is totally just for my own desire for closure and not medically significant at this point, but I am really glad we are doing it.  My ultrasound is scheduled for 11:45 AM tomorrow and the D & C is scheduled for  2PM.  It’s going to be a hard day, but I think it will ultimately help me process the loss and ultimately move out of the “losing, dwelling and moping” stage and into the “it’s over and behind me” stage.

One thing that really helped me get out of my funk waiting for this all to end was attending my first “third party option” support group.  Unlike other groups I’ve joined that focused on infertility and/or repeat loss, this one was dedicated to people thinking about and actively pursuing third party options like egg donor, sperm donor, surrogacy and adoption.  Most of the group was pursuing egg donor, but there was a little of everything represented.  I am on the fence about our next steps because RPL for (and for most) is unexplained.  I feel like I am blindly trying again and again just hoping something works.  I am getting consistent results- losses at 7-9 weeks.  All 5 ended around the same time and I don’t know what is killing them- maybe it is my body (some think it could be immune system related), or maybe i just have bad eggs to begin with (my one conclusive test showed a chromosomal abnormality) or maybe there is some physical issue with my cervix, my blood, who knows.  For this reason I am really interested in learning more about egg donor and surrogacy options.  Even embryo adoption sounds encouraging.  Would I have more luck if the embryo wasn’t ours?  Would our embryo’s do better in a different carrier?  Unfortunately the answer to all of these questions seems to be trial and error and MORE time and MORE waiting.

Even though it seems childish in addition to all of these things, I am feeling my impatience driving this as well.  My birthday is in two weeks and I find myself wanting to cry because I am STILL on this path.  I cried at my last birthday and I had only had 2 losses then.  I’ve upped that to 5 in just one year and my hope level has dropped with each pregnancy I lost and each birthday I face.  Add to the mix I am still pregnant and probably slightly mad with pregnancy hormones.   My head is just spinning right now.  I tend to feel rebooted after a D & C so I expect to feel a lot calmer tomorrow afternoon after it is over.