What’s new

After our last heartbreaking loss, a long break from blogging and a lot of  confusion and soul searching about next steps we are back to trying again.  In August we went ahead with another IVF cycle.   Since we transferred and lost the only two that had tested chromosomally “normal”  back in May we had to start all over again.  We tried a few different things this time hoping for something better.  The two big changes were a new test and a new diet.

For this new cycle we requested chromosomal testing on Day 5/6.  In our first IVF cycle in April we tested on Day 3 (per our Dr.’s recommendation) and since then multiple sources have advised that that type of testing is not reliable.  Even though our IVF Dr. has a lot of confidence in Day 3 testing, he seems to be pretty alone.  The theory is that there just aren’t enough cells on Day 3 to get enough information.  In comparison, on Day 5 there are hundreds of cells and more evidence that the tests are consistant and reliable.  In any case, just surviving to Day 5 is a test of embryo health in itself.  So we agreed to to move ahead for another cycle with the same IVF Dr. but this time with Day 5 testing, which meant that we had to do a frozen transfer instead of fresh stretching the whole process out over multiple months and upping the number of steps, expenses, etc.  The lesson I learned, don’t bother with Day 3 testing.

The second twist we added was a change in my diet.  I gave up gluten, dairy and coffee and followed a pretty strict PCOS diet for the time leading up to the egg retrieval.  Despite all the things I’ve done on this journey, this was by far one of the most intensive.  Since I had a real goal with a deadline I was able to manage it, but it was still very challenging.  In addition to my own natural temptations for all things bready/cakey and creamy it was challenging.   My IVF Dr. recommended “cutting down” on dairy and carbs because of my diagnosis of polycystic ovaries, but it was really my idea to go cold turkey like that.  It was one of the few things I had heard might help so I figured it was about time to try something since I was feeling desperate for any action I could take to up our chances.  Since egg quality and embryo quality are the likely suspects with women of my age it felt actually empowering to do something active and take control of my diet.

It was hard enough on my own, but in social situations, travelling, going out to eat, etc. it became something I had to address.  At first I was really shy about what I was doing, but people got curious and it just made it easier to be up front.  I just said I was giving up dairy and gluten for “fertility-reasons” and that was pretty much all I had to say.  One thing I learned- people love talking about foods they are avoiding and why.  And for the first time friends and family could actually “help” me on this journey by making suggestions for gluten-free, dairy-free alternatives.  So much of this journey I am on my own, so whenever someone voluntarily prepared or offered gluten-free/dairy-free foods (esp. desserts) I was so touched.

So what happened?  At the time of our retrieval we were able to collect 16 eggs, a higher number than our first cycle.  Of these 11 made it to Day 5 for testing.  An astonishing 50% came back as chromosomally normal!  He warned us in advance that we should expect only 30% at the most and I was prepping myself for an even lower number.  So in the end we had a higher number of embryos retrieved, with higher quality (more making it to Day 5) and a whopping 50% normal rate which is statistically way above what you would expect from someone of my age.   With such high numbers we didn’t get any clarification about why we are having so many losses, but it did at least help give us confidence that something is working right and we can put the thoughts of an egg donor to rest for now.  Since the only big change in the protocol from last time to this time is my gluten-free/dairy-free diet, my Dr. is crediting this with upping our numbers and quality and as a result I am (sadly) still on the diet.  Perhaps it was just a coincidence, perhaps it made a difference, who knows…

With 6 embryos banked,  our Dr. recommended that our best chances were still with a surrogate.  However, given that there were more than 2 banked he thought it was reasonable to give my body one last shot at baby making.  So that is where we are.  We transfered a single embryo last Thursday.  Per his recommendation, we didn’t want to waste more than one of our supposedly perfect embryos on my iffy uterus.  It made it out of the thaw ok (something I was worried about) and is hopefully making magic in my nether regions as we speak.  Our first beta is this Sunday and I am praying for some good news.

This second cycle was a lot less dramatic than the first.  I got over my bitterness giving up natural conception, something I thought we had going for us.  And I knew what to expect with the injections and procedures.  Instead of wallowing in “poor  me” I felt like I had matured to just take it and move ahead.  After considering egg donors and surrogates, “conventional” IVF seemed so normal and gave me hope that maybe there was still hope to carry my own genetic baby.  At this moment, both doors are still open and I have been able to delay that decision.  Surrogacy is still out there as an option, (a very complicated and expensive option), but I couldn’t go there without at least giving this one last shot.

It’s officially over

Well, pregnancy #6 ended almost as soon as it started.  I just got the call that my beta was only 35.  At least now we know for sure that it’s over.  As sad as it is, at least I didn’t have to find out yesterday, on Mother’s Day.  It was nice to at least have hope on that day for a change.  I am really at a loss as to what to try next.  We pretty much did it all in this last try and I am running out of hope that anything is going to work with my broken body right now.  My body is literally a death machine.  I can’t find out what’s wrong with me and so I can’t seem to fix anything. I feel like I spent the last year trying to diagnose my situation, spending gobs of money, talking to all these new doctors, doing tons of tests and treatments and taking tons of drugs and then here we are again.   This just confirms what I thought all along, that IVF won’t help us, it will only make the loss more painful.  Good bye my chromosomally perfect little boys.

And now there are ten

Yeah! We made it through the retrieval!  15 eggs were collected, 14 matured and 10 were fertilized.  Now comes the chromosomal testing.  How many of these are actually chromosomally normal?  I am guessing we will lose at least another 5.  I know we only need a good one or two, but watching the numbers drop is a bit disheartening.  Three days from now (Wed.) we will both hear the results of the testing and do the transfer.  We can choose how many to implant at that point.  The decision may be made for us.  If there is only one left, that will be it.

Meanwhile we’ve changed to the new protocol of drugs which involves one injection of progesterone nightly.  I had my first last night and was expecting the worst.  I’ve heard these are really painful.  I was ready with my heating pad Mr. Star did some massaging.  It was the first time he actually gave me an injection which was a whole new step.   If we are lucky enough to have a successful IVF cycle it will be that way for weeks, so I better get used to it.

The one thing that surprised me after the egg retrieval was this new liquid restriction.  I am not allowed to drink more than 1 Liter of liquid a day.  I can not have water, only Gaterade or Propel.  I still have 3 more days of this.  I see my 1 liter bottle on the counter and I stare at it thinking, this is all you have left for the day.  It feels a bit like I am trapped in the desert.  The reasoning behind the restriction I was told was to prevent too much bloating in the ovaries..  When they retrieved the eggs liquid was extracted and the concern is that if I were to have too  much water those empty reserves would just fill up with liquid.  At the same time we are having a record heat wave, so I find myself obsessed with thinking about beverages.  Strangely alcoholic drinks are ok, so I was able to enjoy a glass of a wine and cocktail last night when we were out.    This is just a really weird step in the process I didn’t expect.  I am probably taking it way too seriously.

Today I am spoiling myself with a Reiki session!  My Resolve support group facilitator is also a certified Reiki practitioner and I am planning to see her today.  I had my first session with her a few weeks ago before the IVF process started.  I had been told that you can’t describe Reiki, you just have to do it.  So I did and it was AMAZING!  I had no idea what to expect, but figured it couldn’t hurt.  I found it to be an incredible physical and emotional release.  I felt like a new person afterwards.   I have no idea how my body will respond this time.  After having my eggs forcibly extracted from my body some holistic healing sounds a really good idea.  Plus I love talking to Linda who herself went through IVF to have her twins and has a very positive and comforting presence.    Looking forward to restoring some balance.

Weekend with the Elephant

This weekend it seemed like the Elephant in the room followed me from place to place.  I got that look yesterday at my friend’s birthday party for their 2-year old.  As couples would enter the party, we’d ask “how are you?”  and “look at little sarah…, etc.”.  They’d light up then look at us dumbstruck.  I’ve gotten so used to the face I feel like I can read their mind.  They see that we are not pregnant and remember we have no kids and draw a complete blank.  Since they can’t ask us how OUR kids are doing they just smile and move on like they saw a ghost.  It’s all very awkward.  I know some people are able to make jokes about it, or will even cough up to “we’re trying” or “we’re hoping soon” or something like that.  I haven’t been able to do that.    The best I can think of is, “we’ve been trying for over 4 years and have unexplained recurrent pregnancy loss”.  It sounds way too depressing, so instead I say “we’re doing great”.    When I was first married, the question would have been “are you planning to have kids?” or “when are you going to have kids?”  Now I just get the uncomfortable look of confusion & pity, like they don’t know what box to put us in.  Since we are not parents, what else is there to talk about,  oh, look, is that someone I know over there? let’s see…

After that I went off to acupuncture at this special fertility acupuncture clinic and the elephant followed me even there.  Only this time I was in a waiting room full of people with various fertility problems.  This time we are all avoiding the elephant with eyes averted and focused on our phones and magazines, almost pretending we aren’t there.  Meanwhile we can hear the receptionist talking on the phone with a patient about her upcoming IVF cycle and retrieval.  I find myself looking away.  I know that is why I am there, but somehow I found myself feeling embarrassed and awkward as people’s fertility issues were so casually and graphically explained within earshot as if they were commonplace.

We had our follow up ultrasound this morning with my IVF doctor.  Good news!  We have about 18 follicles growing, which is in line with what was expected based on my age and PCO diagnosis and everything seems to be going ok.  My stomach continues to be the pin cushion for “stabby time” (my lovely name for med time 2x day).   They still need to do some more growing as they are 10 mm and they need to get to 18.  If all continues on track we will be scheduled for retrieval this coming Friday.

Mr. Star got to have his big moment today giving his “sample”.  This was the first time he had to do it AT the clinic.  As if it is not awkward enough, the nurse came into the waiting room with other couples and announced “ok, we are ready for you to give your sample now”.   Dutifully no one looked up, even though we all knew what that meant.  I guess we are all used to this by now.  After it was all over he gave me the report.  Apparently the “sample” room has a sofa with animal print pillows and a TV with a VCR and DVD player.  It included a surprisingly exotic collection of porn videos that featured mostly Asian women and anal sex.  It made us wonder about the demographics they were going for and made for a good laugh on the drive home.    Points for Mr. Star for doing the deed.  I can’t imagine having to do that at the doctor’s office.  Instead I get to get my parts extracted next weekend ;  )

For fun on the drive home we stopped by the cat shelter.  Since our cat died in December we’ve been thinking about maybe getting kittens and I’ve lately been feeling SO ready to adopt.  Apparently we are a few months early though, kitten season is a few months out still.

It’s Official- IVF Begins

We kicked off our first-ever IVF attempt today with my first round of injectibles.  It was actually ok.  I am feeling positive that maybe I can handle this.  It was my first time injecting myself with anything and the whole concept had me really nervous.  Now that I’ve done it, it seems a little less daunting.

I feel like I should be really excited about getting back in the game, but to be honest, I am just finding myself going through the motions.   There is some relief to finally be doing this after all the waiting, but I don’t have this super optimism that something amazing is going to happen.  Maybe that happens later.  Instead I find myself thinking “Here we go again doing more steps towards a journey that just seems to keep going”.   Even if it works, the whole thing is resting on me not miscarrying and there’s no real evidence that IVF is going to help.

For this reason, I feel really mixed about this cycle.  I am excited to be doing SOMETHING but still feeling really bitter that I find myself going this far and spending so much time and money with so little proof that it will help.  I have a lot of self-doubts about taking this path.  Since last June we’ve spent most of our time prepping records, doing tests and meeting with IVF and immunology doctors and I find myself feeling empty handed after it all.  Maybe instead of doing all that we should have just kept trying naturally.  It’s been over ten months since I lost my last pregnancy and there’s this feeling that maybe, just maybe the next natural one would have been the ONE!  Instead I have been forced to wait on trying while gathering medical records, scheduling doctor’s appointments, doing countless tests and questionable treatments (even though I did it I still find LIT pretty questionable in terms of efficacy).  So it is with this heavy, doubtful and bitter heart that I am starting this process.

I took of my meds to record where we are.  My first week I am on the Gonal-F, Menopure, Cipro, Dexamethasone, Metformin, Baby Aspirin and Pre natals.  I am expecting some pretty funky side effects.  Any tips on what to expect?

 

Can we keep our pants on please?

It is starting to feel real, like this is really going to happen.  We brought ourselves to the IVF doc for the first face-to-face appointment and I somehow mustered up a brave face (after days of complete despair and self-pity and “why me’s”).

It began with the financial consultation.  We went in knowing the costs for the most part, resigned that this is just where we are now, paying to get pregnant, no more freebies.  Sniff.  While she was listing off the services and prices I had to brace myself to not be overwhelmed.  This is the first really expensive procedure we’ve encountered during this journey.  I feel both lucky and unlucky about that.  It is what it is at this point.

Next came the first u/s follicle count with the Doctor.  The nurse repeated that this would be a transvaginal ultrasound with emphasis on vaginal.  After having a million of these things up in my business I forgot there was any other kind of ultrasound out there.  Her warning as if I was new to this brought me back memories of my first time… (dream sequence music here) Do you remember your first time?  I know it sounds kind of dirty when I say it that way.  I am almost nostalgic remembering  my first, back when I was like “you are putting that thing where??? ”  I’ve actually heard fertiles complain about it being one of the worst parts of pregnancy.   Ha!  I too naively thought it was a big deal, Ha, Ha, back when I was merely on pregnancy #1, so young and naive…  It’s amazing what things we get used to and accept as normal and no big deal along this journey!

Mr. Star and I eagerly waited in the exam room for the Dr. first excited and nervous and then bored, and then (at least for me) annoyed and impatient.  We waited for thirty minutes.  It’s not a big deal, esp. if you have a real chair and you get to keep your pants on.  Sorry, this is just a little pet peeve of mine that has been happening a lot lately.  Why do they ask you to disrobe so early?  I promise I can strip off my pants in 60 seconds if I get to keep them on while I wait, esp. if you need me to wait a bit longer.  Is it me, or is there no way to get comfortable being half naked and bleeding while sitting on an exam table for a long time.   Again, the things we tolerate.  What choice is there?

When the Dr. finally arrived he was really professional and calming which set the right tone.  When it came time to do the u/s we actually had some good news.  The follicle count was higher than average for my age.  He said I had Polycystic Ovaries, but not PCOS.  This sounded like good news at first, but then he was expressing concern that it may be a sign of other issues such as insulin response.  He prescribed Metformin to help manage this.  I started my first dose today (and had my first 500mg about twenty minutes ago).  So far so good, but apparently the side effects are pretty rough- nausea, vomiting, cramps and diarrhea.  I start with a low dose and work up in the hopes that I can learn to tolerate it.  I already feel a bit light headed and funky.  Damn, that was fast!  I also start the birth control pills today.  They gave me Reclipsen by Watson.  Not one I recognize, but what the hell.  It’s probably the most benign drug I’ll be taking during this experience so I can’t get all up and worried about it.

They left me with a long list of to-do’s, including scheduling another saline ultrasound.  I literally passed out during the last one from the pain.  Any suggestions on how to make it suck a little less?  So far my plan is to just beg for drugs to dull the pain and relax my nerves.

Back in the game

Thank you all so much for your support on my last post.  It just means the world to know that I am not the only one who feels alone in this.

After a cycle that was a complete bust (unclear if I ovulated at all, abnormal early bleeding) I am happy to report that my hope is renewed. We have a clean slate this cycle and a good start.  We got the clear to try again with Femara last week and we saw two big follicles on my right ovary on Saturday at our mid cycle checkup.  I know an OPK at home is really all you need, but there is something about actually seeing the follicles on the screen that just boosted my confidence.   After so many bad pregnancy ultrasounds these mid-cycle scans are the only ones I can honestly say I look forward to, proof that my body can do something right.  On a more optimistic side, I like to hope that if things work out I can have memories of my child before they were even conceived!

My RE said they looked ready to go any minute now, and sure enough the next morning my OPK gave me the double lines to confirm the surge.  I could even feel some aching down there in the ovary zone confirming something was definitely going on.  With three days in a row of trying, I’d say we’ve done all we can and now it is just up to time, fate and some higher power to decide if this month will grace us with a positive pee stick.  There is a lot of pressure on this cycle because we decided to move ahead with IVF for our next cycle.  I think it is the right way to go after four years of trying this naturally, but it’s a whole new ball game and not one I thought I’d  have to get into after having being able to conceive naturally five times already.  It’s not clear that we would have better odds with IVF to prevent miscarriage, but it would just (hopefully) speed up the rate at which I am getting pregnant.  Hopefully between the immunology treatments, the natural cycle and the IVF we’ll have a healthy normal pregnancy sometime soon and if we are really lucky it makes it out alive.  Two week wait here we come!

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Post Continued>

Thanks guys.  Just when I thought I had it all together I just got hit with another giddy pregnancy announcement at a group dinner.  Forcing a smile hurt as much as ever.  Do those announcements ever get any easier?

Poking Gone Wrong

Fresh back from vacation I start right up on the baby attempt train again.  Ready for Step 1 – Get beta down to zero.  I went over to the lab yesterday where I am a regular and sure enough I turned this simple step into a huge drama.  Has this ever happened to you?  As they sit me down in the chair I mentally prep for the needle and this time they manage to stab a whole new level of pain in my arm.  I felt a line of pain from the point of the needle in my elbow all the way to my finger tip.  I can only guess they hit a nerve directly and missed the vein.  In pain and shock I yelled out “Ow!” to the horror of the lab tech who looked at me like I was a complete wimp and it must just be me.

My arm feels slightly numb now.  She then proceeds to draw from the other arm using a tiny butterfly needle that goes in painlessly, but then it had to happen.  Sure enough my body went into shut down mode and I felt myself fainting, my forehead sweating, my stomach feeling nauseas and the room spinning.   Oy!   I thought it was just a momentary blip but I just went down for a while on the edge of fainting (a very uncomfortable edge).

She called the nurses and sure enough 3 people showed up with blood pressure monitors and the works.  They forced me to drink water and juice and from the blood they drew confirmed my blood sugar was low (admittedly I was trying to cut back a little after eating too much on vacation so had only had a sandwich and fruit to eat that day).  My blood pressure was also at record lows (37/57).  They mentioned that I might even need an IV (good grief!).    While they monitored me they commented on how I must be afraid of needles and blood tests.  A seasoned regular at getting poked at this point, I was a bit annoyed by the comments.

To wrap up they put me on a gurney (not just  wheelchair) where I was dramatically wheeled flat out of the lab (and in front of the 20+ people who have been waiting in the waiting area to get their tests) and to the Urgent care unit where another doctor did an EKG to make sure I wasn’t having heart failure (or something else).  After about an hour of drama magically my blood pressure and heart rate returned to normal and I was discharged.   I credit the two cans of apple juice and exiting the lab room for my recovery.    I tried to explain that I go there almost every  month to be poked, but they still treated me like it was my first time to the lab which was a bit annoying.  I am convinced my body freaked out from the bad stab from the lab tech who seemed new (new to me).  I think at this point I can tell a good poke from a bad one ;  )

Unfortunately it is a week of poking for me.  I have two more stabs this week, one at the new immunology treatment center I am testing out and one at that same lab that did the bad poke again.   Both blood tests are being sent over to my new doctor who is focusing specifically on immunology issues.  I am crossing my fingers that immunology treatments are going to make a difference for our next try which we plan to do with IVF.  When I go back to my regular lab I will definitely request someone else next time!

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.