Science, Setbacks, and Hurry Up and Wait...

UGH...

I am so amazed and encouraged by what is in store for us that I seriously can't wait for the next few weeks to go by, but wait we must...because, you know...4 years and 8 mos isn't quite long enough or something...

So in my spare time/relatively sleepless nights/time spent peeing (interstitial cystitis flare--I had to pee 38 times Tuesday...apparently I really do have it, dammit), I have read up on the endometrial receptivity array (ERA). This is the test that I will have performed on my lining hopefully here in the next 5/6/7 weeks depending on how quickly my elderly ovaries want to get up and play.

If you are an uber dork/geek like me, then here is a good start, or more reader friendly here.  Anyway, this seems pretty amazing/promising.  They will basically test for different kinds of  RNA being expressed in my endometrial cells to see if they are "in phase" or receptive to an embryo implanting. When your endometrium is in phase, it produces more of one type of RNA.  Some women, who have not had any success with healthy embryos implanting, have found out from this test that they need to tweak/personalize (I'm digging the slashes today) their protocol.  Credit this info to B.W. Donesky, MD.

Flashback to middle school health class- we base everything off a 28 day system for women.  If there is variation in the length of your cycle, the follicular side (from your period to when you ovulate) is what we blame the variation on. If a sperm does not meet an egg 2 weeks after you ovulate, you will have your period.  That part (luteal phase) is supposed to be relatively fixed.  This is what the calendar method of birth control is based on.  So basically count the days of your cycle - 14 = the day you ovulated.  Credit this info to M.E. Bullen, MD...and maybe whoever my middle school health teacher was that made this information way too humiliating to actually be useful and tainted it with getting pregnant from kissing stories and other lies...hmm...arguably it was all lies for me...

Anywho, some women's ovaries weren't necessarily paying attention to Ms. What's-her-name in middle school.  There are luteal phase defects which is controversial in fertility land because dammit, 14 days.  But according to relatively new research based off old research that inspired more research...it may actually be a thing.  Some women's uterine lining just doesn't sync up with the timing of their ovulation.  The ERA helps figure out if the endometrium is is too mature or immature to allow an embryo to implant.  It reminds me a lot of trying to find off campus housing...either the housing was ready for you to pay rent in July, or September, but never August when you actually started class... I digress...even better if not being in phase is your problem, it is modifiable.  You either start your progesterone earlier, or later.  FIXED! Pretty simple.  Usually the off track lining requires a follow up ERA  to ensure you have everything lined up correctly, so that takes more time...but totally worth it.  Repeat previous statement until belief occurs. Oh, and also credit Dr. Donesky with this information while realizing it is heavily paraphrased...actually all of this is...

So back to me...Yeah... recovery has been pretty smooth until my heavily into remission interstitial cystitis seemed to decide that now was an appropriate time to make my life a living hell.  Did I mention I had to pee 38 times Tuesday?  It honestly gets to a point that you don't even want to flush...or get off the toilet for that matter. Fortunately I was able to have a treatment yesterday, which has greatly, so far, decreased my field trips to the loo...When it rains, I pee...

Other than that, I am sailing right along, and BJ is my ever-ready, willing, and wonderful accomplice. Not to say all this waiting isn't frustrating. It totally is, but we don't have any options that don't require a wait.

I'm also fully aware that nothing is guaranteed. I could have this test and be totally in phase.  I don't think that really will be any more damning to our situation.  Yes we've possibly attempted to conceive 56 times, but honestly, that last FET, was probably the first time we had a real chance with what appeared to be a viable, healthy blastocyst.  So you could very easily argue, we've only had one real shot so far.  And just because you have a blastocyst, does not always mean they are perfect/healthy embryos.  In conclusion...

Peace, Love, and Never Forget What God and Science Can Do,

MK

Surgery #2.

I feel like a legit, infertility veteran now.  I mean half a decade, 2 surgeries, multiple treatment cycles. I think I should get another merit badge.

Anyway, I had surgery #2 yesterday and it was pretty easy.  Dr. Donesky removed some tissue from my cervical canal and uterus to help catheters pass through more easily.  Hopefully this will mean less uterine irritability after my next embryo transfer.  It also should make just having a period a little easier.  Apparently, I had a lot of tissue that was getting in the way of my internal cervical os.  I did not have any fibroids, which I was pleased with since my mother has a history of fibroids.  Dr. D told my husband that my uterus appeared healthy. Also my failing ovaries seem to have calmed my endometriosis, some.  There is some good with the bad.

In our next step we will be doing a mock cycle with an endometrial function test performed on the day that would have been my transfer day.  I have spent way too much time researching the wrong test and had myself all worked up into a frenzy about how I will never be able to carry a child.  There is an older, but still widely used E-tegrity test that tests for beta-3 integrins.  Beta-3 integrin is a protein that helps with tissue adhesion...so basically glue to hold the embryo to the wall of the uterus. Many women with mild endometriosis have little to none of this protein and so their results come back saying they need to use a surrogate.

So reading this, I was devastated.  I have mild endo, and I have been unable to conceive.  I was sure we would be told we would need a surrogate.  I have nothing to give a surrogate, so basically that means we would have to adopt.  And it would be all slapped on my face at one time.  I'm not ready. If we were ready, we would have turned in our adoption application instead of staring at it with hesitation, fear and ultimately devastation.

When Dr. Donesky came to pre-op he asked if I had any questions, and I ended up asking him about the biopsy. He told me he did not like the E-tegrity test, and that he's been able to help many women "without beta-3 integrins" conceive using donor eggs.  I don't think I'd ever been so happy about our fertility options in a long-while until I heard that.  He'll be doing a test with another acronym that's only a year old.  Miami and LA are the only places in the US that run the test. I've had too many drugs in the last 24 hours to remember what the acronym was.  Anywho, the answer will not be if I can or can't carry a pregnancy, but how many more or less days of progesterone I need to get my endometrium in the right phase.

Anyway...I'm supposed to heal for a few weeks, and hopefully we can begin the mock cycle.  I'm excited.  We've still got some time and options.  And I'm ready to use that time to take them!

Peace, love and hopefulness,
MK

New Year

So, yes, it's a new year and that's fine and dandy, but it's just another day.  The only thing I'm resolving this year is to not make a resolution.  I've had enough disappointment this past year, that I don't dare set myself up for any more failures.  So this year there will be:

No Resolutions
No Deadlines
No Setting Myself Up for Disappointment

Everything in my type A personality screams 'But!'.
Nope! Nope! Nope!

There will only be moments. This moment, for instance, I'm writing and reinforcing my anti-resolution policy with my silly cat curled up beside me.  In this exact moment I am content and determined.  At this time, I am fine.

After 54 months/attempts to have the children we desperately want, we completly grasp failure.  To live in a community where there is a dedicated NICU for babies born drug-addicted, failing at conception is, well, at the very least, felt by every fiber in our being.

Every new year for the past 5 years I've thought, 'This will be our year!' 'Something will have to work by the end of the year'.  And every year we come up empty-handed.

To experience years of infertility is to know infinite disappointment.  When you think you can't be any more hurt, or any more distraught over a result, you can.  The pit of despair seems to grow deeper.

I will never be perfect, I'll probably never not hurt or have pain somewhere, and I'll never be any less or more than I am right here in this moment. But, at this very moment, I am good enough for my husband, so I'm going to start believing that I'm good enough, period.

I am not going to judge myself because I didn't meet a deadline, or I did not reach my goal.  I'm just going to focus on doing what I can today, to make myself proud of me.  I cannot conceive a child, but if completing 1 of the questions on 60+ pages of adoption application paperwork that I can barely stomach looking at counts, then I have accomplished something.  If it's agreeing to have another surgery before future fertility treatments, or if it's agreeing to go through some test cycles before we even try again, it's something, and something is going to be enough this year.

I am not setting myself for another disappointing year, month, treatment cycle.  I'm just going to be present.  It's not that I'm giving up, it's just after trying for 4.5 years, I've learned you cannot force it, will it, control it, or wish it into being.  But that doesn't mean you stop dreaming...

Peace, Love, and Presence

Mary Katherine

Merry Christmas, Dammit!

I'm beginning to really resent the holidays.  They are starting to become soul-sucking.  I'm trying to fake myself into being into them.  I've decorated, I've bought a few presents that are here and remain unwrapped.  It's just not fun to do something with so much pent up resentment.

I wasn't thankful on Thanksgiving, and I'm not merry.  I'm angry and sad.

I met with Dr. Donesky last week as I'm still having problems.  After reviewing my labwork and symptoms, he just told me this is the beginning of the end of my ovaries.  I'm officially in menopause.  I've known this, yet hearing it just made me sad.  Sad enough to be weepy, unhappy and throw pity-parties for myself.

I just have a hard time accepting the fact that someone can accuse me of looking like I'm 16 one day, and then finding out I'm in menopause the next.  I guess the age thing will catch up in a hurry now.  I've had the insomnia for a while, I have hot flashes, night sweats...I'm a childless hag.

I'm exhausted from trying to pretend like everything is okay when nothing is okay with this situation. As if I'm suppose to be grateful that I "still have options."  Options that cost around 30,000 dollars and aren't guaranteed.  I am completely ungrateful for infertility right now.

I feel like I'm just wallowing in life.  This is not where I thought I would be at all...I thought I would be finished having children by now.  Enjoying the life of a young, completed family.  I certainly didn't think I'd still be undergoing fertility treatments and that they would not be successful.  I'm fed up, but I can't let myself give up.

Everyone in my age bracket is prepping for their Christmas with their children, and I'm trying to figure out what to get my dog this year, again.  I'm just so over celebrating the birth of an immaculately conceived baby, when I can not even get pregnant using donor eggs.  The more I think about it the more I hate Christmas.  I just want it to be over, so I can stop faking it.

I used to love Christmas...now it's just another reminder of everything I don't have.  All I want for Christmas is a healthy child of my own.  Nobody seems to be able to help us accomplish that.

Peace, Love, and Bah-humbug,

Mary Katherine  

Rebuilding

I think I'm finding myself again.  It's been pretty awful at times, but it's also been normal at other times.  People want you to just be fixed, but that is a little much to ask, so I just expect myself to function, and that seems to be working.  I end up enjoying most of my days without having the pressure of having to be "happy."  It's too much to expect everyone to be happy all the time, especially when recuperating from a failed cycle and, lest we forget, still facing childlessness while the rest of the world populates.

I think I'm out of despair, and in the "angrily accepting" stage of grief.  I've had a couple of "Have you thought about adopting?" and "How many children do you have?" and the ever famous "My brother's friend's cousin's sister-in-law went through 'all that' and she finally adopted and 4 months later she was pregnant with perfect identical twins which she gave birth to at home with a midwife, flowers, and unicorns,"  (I may have embellished that last one a bit..) in the last couple of weeks.

Someone asked me the other day if I'd ever tried Clomid...after I'd talked about having IVF.  Don't piss on me and tell me it's raining!  Why did you let me waste my breath if you think Clomid is the cure-all for infertility???? 

I also love loathe any sentence that starts with "Have you thought about..."  All I do is think, and ask, and pray, and hope and plead for guidance. Honestly, you telling me about how your kin-folk "quit trying" and got pregnant doesn't inspire hope, it quite honestly inspires more emotional pain and despair. Because it is physiologically impossible for me to conceive my own child.  No...don't say, "but miracles happen." Hell, how anyone conceives is a miracle! Miracles happen for people who are not quite as infertile as maybe they were thought to be, but it's just not going to happen for me, because I am barren. So barren that I am officially being treated for menopause.  As in my ovaries have said 'nope, no mas, we are taking early retirement'.  Help me retain my acceptance, and don't make me feel like I've given up too soon.

Especially when giving up is the total opposite of what we are doing.  We've got some obstacles to face before we can try again, and we want to give ourselves enough time to build back up our emotional stamina. Not to mention, we don't want to ruin anymore holidays with another memory of loss.

So I guess the theme of this blog is we're ok, and for now that's enough.  We can live a life without joy. We can enjoy things, people, places and moments.  We can make do with what we have, but we can't expect to experience joy...and that's ok.  Not everyone has a perfect life, and not everyone who makes decision A will get outcome B.  No matter how much they want it.  BJ and I continue to weigh each decision we make and choose a path that will give us the closure we need, regardless of the outcome.

Peace, Love, and Kubler-Ross,
Mary Katherine

Unwritten

Well, days continue to pass, and it looks like life is continuing to happen whether I rejoin the living or not.  I'm not totally ready to rejoin and commit to life as we know it.  I evert my gaze anytime I see a stroller.  I ignore babies.  I hide in bathrooms and cry.  Occasionally,  I let the pain overwhelm me as it comes crushing down on my chest. I refuse to go out in public. I hide in oversize clothes as if they'll protect me from the barrage of "What did you expect?" and "Why don't you just adopt?". 

Other times I pretend I'm strong. The whole "fake it till you make it." Although, you'd know I'm faking because I'm not brave enough to try to wear contacts just yet.  That's always the dead giveaway.  

There are tons of books about infertility and how if you "hang in there" you'll get your happy ending. What they don't tell you is how to gracefully navigate through the infinite disappointment to find hope again.  They tell you to hold on to hope.  We do, then we lose our grasp and cling to whatever far off possibility we can find, only to find ourselves in the exact same situation...just that much further from hope and that much closer to despair. 

Sometimes I wish infertility was a terminal disease just so I know it would end. I have no plans for a life without children and as long as there is a chance, I cannot accept giving up.  I wish someone would tell me that I had to have a hysterectomy, and I just wish I knew how the story was going to end.  To the point that I don't even care how if I just knew this pain would be finite.  Where there are answers, there is peace.  Any answer...

Instead, we have to endure this pain, once again.  We have to fight our way back passed the existing mode and back into "living" mode.  Pretend we are ok with life the way it is in a world where 93% of people do not have the slightest clue.  Devise yet another plan, put ourselves at risk for a chance of our greatest joy or another round of absolute heartbreak and devastation.  

Right now we are just pursuing healing.  Trying to restore our strength so we can fake it through another day, week, month, year or years until we can have a family of our own.  Honestly, that's all it is.  Faking it in a world where precious few understand how difficult it is to not be able to do the one thing you were biologically designed for and your heart desired so much.

Peace, Love, and Pretend,

MK

Well...

That's over.

I am not pregnant.  Even after using a healthy embryo.  Even after having more side effects from the hormones than I ever have had.  I wish I could understand why, how, and what happened, but we don't and won't ever know for certain.  There was only a 50% chance as with every other frozen embryo transfer performed with a day 5 blast.  However I seem to on the losing side of these statistics no matter what we do.

I have an appointment with Donesky on Thursday.  We have another embryo.  We have options, still, but none of that takes away the disappointment or the pain in the immediate moments.

We keep "pulling out all the stops", and none of it seems to really matter.  I don't know why.  I hate not knowing.  I hate being told "there is no reason you aren't conceiving" when here I am inconceivably not pregnant.

Well, let the healing begin...

Peace, Love, and Onwards and Upwards.