Saying goodbye

My Grandfather has taken a turn for the worse.  The doctors now have given him only 3-5 days to live.  We have canceled our IVF plans and will be traveling to be with him and my family.

He led a full life and was a wonderful man.  But he'll be gone way to soon.  He was a very healthy, vibrant and strong 75 year old man.

Things never seem easy.

CD2 ultrasound

Yesterday the CCRM nurse faxed the instructions for today's ultrasound.  However there wasn't anything written on it but "rule out cysts".  I thought it was a typo and and oversight.  There was nothing about checking my lining or pre-antricles or blood work.  I was so confused. 

So I called the nurse at CCRM to question it.  It turns out that they were only trying to rule out the cyst.  If it was gone they wanted to start me on the priming again and do some suppression this month if the stims were gone.  

Hold the phone.   

Cue alarm at them not knowing my case.   (I'm not totally surprised at this - but the suppression thing really through me for a loop!)

I told her that we didn't want to do that.  For a few reasons:  

1. That I felt like it was more than a coincidence that I had only ever had cysts while taking the testosterone.   

2. That I read the research and the priming protocol only lead to one more egg on average per retrieval, and I was willing to sacrifice it. 

3.  That D and I were nearing the end of trying and we really just want to get this going (likely the most pressing reason)

4.  That I didn't think the doctor would want to suppress me with lupron or other meds because it would  over suppress me.   

5. That I may still have a cyst and this could all be moot. 

She said she would call the doctor and call me back. 

She promptly returned my call and said the doctor agreed.  She sent me a new requisition that included blood work.  

Today I had that done and yay! No cysts! No cysts! No cysts!!! 

My blood work showed that my estrogen and progesterone were suppressed so I'm good to go!  Starting stims tomorrow! 

I can't believe it! I'm so pumped! 

Support in all the right places

It's embarrassing to admit, and annoying to experience.

When D is down and turns to me for support, I almost always start feeling down after myself.  Usually this happens after a few days.  It's like the heaviness of what he has said sinks in, and I start feeling myself go lower.

I despise that this happens.  I wish that I could be stronger.  I wish that I would not internalize everything, as is my nature.  I wish that him confiding in me could feel healthier for us both.

I want to be there for him.  But it's so hard to see your spouse hurting that bad.  I think it's harder also because he doesn't talk to his friends or family about IF stuff, leaving it all for me. 

I do.  Admittedly though, it's rarely the heavy emotional stuff that I want (and need) to get off my chest, and more like the keeping up-to-date kind of stuff.   Every little bit helps though, and I am grateful for the empathy that I have received. 

Sometimes however, it starts to wear on me that in some most of my long term friendships and family relationships that they have really no clue of what this experience has been like for us.  Either because they haven't asked or because I've glossed over the ugliness and spared them the details all of these years. 

A few weeks ago I had a friend ask me "what's the worst thing about infertility?" I love that she asked me this.  It was healing just to hear her say it.   It's one that nobody has ever taken the time to ask me before.  Or, that I've even asked myself.   

A lot of things came to mind so I asked her for clarification, "physically or emotionally?"  I wanted her to respond by saying "either" or "both".   I have a lot on my mind after five years of being stuck in IF-land.   The wounds from the emotional category has hands down been the hardest part on us. 

She answered "physically".  The first thing that pops in my head now to that question, is my miscarriage.  It was a misoprostal-induced vomiting crampy ugly nightmare.   However, for some reason,  I answered her that it was the vaginal progesterone supplements that you need to do three times a day for weeks on end.  I told her about the extra pleasure of getting to jam tiny little blue estrogen pills amongst the foamy mess in your who-ha every day.  I told her about how this results in smurf-like discharge which is especially a turn on and is great for your sex life.  I told her about how one of my fellow IF friends jokingly started calling intercourse "smurf sex".     

Even better than her asking me this, was that after I responded, she did not promptly jump out of the car.   

Reflecting on this makes me realize that it took courage for her to ask me this question, AND listen to my answer (even if it was only part of it).  She risked watching my tears flow and hearing something she probably wouldn't like, and might stick in her thoughts for awhile.  I love her for it.  THIS is how I want to be there for my husband.  I'm working on it. 

I want to know what your experiences have been like.  I want you to have the opportunity to share   your worst, like I did.

I'm asking you to share.  What has been the worst thing about your infertility?

Here we go again

Rolling the dice on CD 1 again.

Wonder what's in store.  Will it be a nice plump cyst for month #3? A plump cyst that produces estrogen? A small cyst?  Or a green flag from the doctor to attempt IVF #2 (procedure number 8.5 - who's counting though?)

While I'm glad my period did finally show up, it didn't come without a bit of drama.  It interrupts a weekend we were planning with D's parents.  I was already not sleeping well just thinking about this weekend.  I enjoy their company but I really need it in smaller doses.  They have some odd habits, including ones surrounding their cat (who travels with us!).

I wasn't totally geared up to go away with them yet.  So maybe it's a blessing in disguise.

I'm really glad my period didn't start late in the day today because that would added considerable stress to the situation, we would have been several hours in the opposite direction as our clinic.

Second silver lining...an entirely free weekend!  :)

In his words

Hubby says that all of his buckets are low.  He just needs something he says.  He's been dealt some crappy cards and he is struggling with purpose.  He's depressed.

I wish I could give him that something and make him feel better.  I wish that he could just catch a break in one of these areas.  He says that a baby would make things so much better.

I feel like I shouldn't think like this either, but I do.   It sounds to me like the people who have a bad marriage but have a baby to fix things, and the end they just end up divorced with a kid.  I feel like a baby will change our trajectory.  We need this black hole of IF to be ended.  We need to focus on positives.  On the good things in life.

Today he said something else that made his perspective make a little more sense to me.  He says because all of his buckets are so low that he just can't go through another miscarriage.  That it was just too awful. That he doesn't feel like he can handle it.  This is why he doesn't want to do any more fertility treatments after this IVF.  

I totally get that.  A few months ago I remember telling him that I was feeling so low.  That I was scared of receiving any more bad news because I couldn't imagine being lower than I was.  I think that's where he is now.

Decisions and the waiting game

This is all my calendar today.   Not much on the go.  The most exciting thing was hoping for my period to come so I could find out if the cyst is gone.   There is no sign of it coming (usually I get the lovely advance notice of a week of spotting before hand).  Well that is, except yesterday's hefty dose of bitchiness directed at hubby.  He might have deserved that though, I don't know.

It was cold outside today so I spent the day grocery shopping and then making a couple of soups.  I'm thinking (hoping?) that this might be the last urge that I get to make some in a while.   Bring on the BBQ weather and food!

Hubby and I are still on different pages fertility-wise.  I didn't have the desire to write about it until now.  I was just letting it simmer for a while.   The short of it is that D wants to finish up with this round of IVF.  I feel that he is nearing the end of his IF rope and I'm trying to respect that.   He thinks it is my body that is preventing us from getting pregnant more than an embryo quality issue (ouch).   I think it's embryo quality issue, and so does the doctor.

If D can only go through this a few more times, I want to skip the OE IVF and move to DE.  He's going to be 37 soon and he's seeing the big 4-0 approaching.  I think for the first time he's feeling his biological clock ticking.

I know if I have a baby I won't regret how it came to us.  We've fought long and hard enough.  And I'm starting to wonder for what?

If OE IVF doesn't work this time around, D wants to move to traditional adoption.  I don't.  I can't explain why exactly, I just know I'm not fully there.   I want to try DE with donor sperm.

D doesn't really understand my desire to experience pregnancy.  He thinks adoption is just about the same thing.  This frustrates me.  I feel like after all that has been taken from us, I just want this one thing.   I want our baby to be welcomed into our family with the 9 months in utero that most other mothers get.  I want to control the prenatal environment.  I want to experience childbirth.

D says he needs the closure of doing this OE IVF.  He says we are too close to the finish line to quit now.  Not to mention that we have $5,000 of non-returnable Follistim just rotting away in our fridge.  He says that the money spent going after it ($25,000 for fun) will be on him (we have joint accounts, we're just talking about the guilt of spending it I suppose).  I would rather spend the rest on DE and some furniture (for a nursery!).

Something has else has happened.  The hardest part of this part of the journey lately doesn't seem to be pregnancy announcements and seeing swollen bellies anymore.  It's almost like I've become largely desensitized.   The hardest part now is that D and I don't agree on which way to proceed.

There doesn't seem to be a right path anymore.  Up until now we made the best choice together after considering the options.  While there have been many bumps in the road, one choice always seemed to stand out.   Not the case anymore folks.

Feeling a little anxious

It's been a hectic couple of days.  Especially because my previously very healthy Grandpa had a stroke on Thursday.  We rushed to where he was (4 hour drive) to see him at the hospital.  We were told that he had a bleed deep within his brain and that if it didn't stop within 6 hours that it would likely be fatal.  Thankfully, it did stop.  He was left with some left side weakness.  It was all too familiar territory, having been through this with my sister.  Although thankfully, his stroke was much less severe it now seems.   A few nights after he had a seizure in his sleep.   When he awoke, he actually had more use of his weak arm than he did before the seizure.  Last night he had another seizure and he's been put on meds that sedate him.  It's hard to say where he's at today.

I've been struggling with feelings of wanting to switch back to egg donation and skip the OE IVF.  I'm done with this roller-coaster.  After a big talk, I know D is too.   He wants to continue with this OE IVF for closure, then move onto traditional adoption.  I'm stuck between wanting to try the OE IVF and move right to DE.  I don't feel ready to move onto traditional adoption.   I wish I did.  He thinks my body is defective (my words not his), I think my body wants to be pregnant, and just hasn't really had the chance yet.   Not to mention that DE opens another can of worms because D's sperm isn't so hot either.

So we are still waiting for CD 1... again.  And hoping that the cyst disappears on it's own.  We're in no-man's land with decisions at this point.

What the doctor said about the cyst

He said that we have to wait until my next period.  That he doesn't want me to take any more medication.

They will wait until then to see if it goes away on it's own with my next period.  If it is still present they will address it.

The nurse said they wouldn't have seen this on the laparoscopy because it is likely inside my ovary.

She also said that sometimes they can linger for months.  She said that they shouldn't be growing because it's not a good sign.  I asked her what that could be a sign of and she said that it could "impact the ovary".

My friend had a cyst in her ovary and it ruptured, causing her to lose hers.  I wonder if this is what she means?  In a way if I lost both of my ovaries next month in some weird way I might also view it as a blessing.   These damn shrivelled up, barren little things have caused me nothing but unhappiness.

She said that there is nothing I can do to make it go away faster.  She said sometimes they give people birth control, but with me they just wanted to see if it would go away on it's own.  I'm good with that approach.

D & I had a big talk today about our next steps.  I'm mostly too exhausted to write about it here today.  Maybe in a few days.  I've been in IF overdrive and I need a break.

Thank you for all of your kind words of support.  Today it felt like all I had to hang on to.

Courage or stupidity

D's near or at the end of his rope with all of our IF treatments.  I'm not quite there yet, but I am approaching.  Debating our end point has me thinking about what the two ways our story could be told.

You hear or read stories about people who persevered through crazy, intense, and heart wrenching scenarios.  One that comes to mind is that of Mo and Will, who navigated their way through tremendous obstacles (cancer, and seven miscarriages among many other things).  They now have a beautiful baby in their arms.   I put them well into the courageous category, and I know I would do this regardless of whether their most recent efforts made them parents or not.   It's because they handled the journey with intelligence, strength and grace.

I'm finding as we wade through deeper waters of IF, I'm starting to judge myself more harshly.  I'm wondering if I'm no longer making smart choices. Two, three and four years into this seemed like we were fighting the good fight.  We were young and had time on our side.  Year five I felt like we had new information and were on to something new and more promising with CCRM.

As we approach year six, I wonder if we've done something terribly wrong.   Especially as D reminds me of a couple that was in our adoption course who now has a toddler because they chose traditional adoption.  That could have been us.

I wonder if I am in denial? With all of what we know (and don't know) maybe chances of success are  too slim?  Maybe the cost of pursuing treatment are now too high? I feel time running short, we are emotionally drained and financially tired, not to mention the opportunity costs of IF.

D is going to be 37 soon.  I'm going to be 34 this year and according to every doctor I've met, my ovaries are a decade older than they should be.   If we want to pursue adoption it will be a lot harder (I think) if we are a few years older.

I feel like if the next procedure worked for us, I would look back and think about what an incredible story it would be.  "It was all worth it" is what people say when they end up with what they wanted.   Nobody questions your decisions any longer.  We would say that we triumphed after a long hard fight.  That we were beaten down but we got back up again and again, and again.  That we figured things out.  We made our dreams come true.

There's another part of me that sees how this story could be told in a much different light.  Perhaps as we enter six years in, we are entering a new territory.  I think I would question whether we made intelligent decisions from this point on.   Even possibly decisions about DE IVF if it didn't work either.

 

Why we went from OE to Donor Embryos back to OE

I wanted to write something about why things worked out for us in this weird order.

- At first the doctors gave us only a slim chance at our own IVF working, because of my repeated FSH levels.   They were all shocked at how high my FSH was for my age.

- We decided to do a "closure" IVF cycle anyways.  We had the money and our doctors agreed to this because I was in my twenties.  Under a mild dose of stims I produced 4 follicles.

- On the night of what I thought was going to be the egg retrieval, my sister had her stroke.  The cycle was cancelled.

- Later I learned that this was just what the nurse called a practice cycle.  They wanted to only do an   an IUI.  They wanted to amp up my meds for the next real IVF.  This was not told to us in advance and I don't think I would have ever agreed to a practice cycle due to the cost of the meds and the fact that D's sperm count is very low.   It was one of a few scary reasons why moved away from this clinic.

- During the stressful time of my sister's stroke, I decided that my response to the IVF wasn't good enough to proceed.  That if it did work it might only work once.  And I wanted more than one child, and it would be nice if those children were genetically related to each other.  I didn't care if they were related to us.  I decided (and D agreed) that we would move onto the option of magic donor embryos, the option originally suggested to us by clinic #1 before we did our closure IVF.

- We spent what felt like hundreds of years (really just 6-8 months) completing our home study and adoption course (required where I live) which was required to adopt the embryos through Nightlight.

- We adopted our first set of embryos (only 2 embryos, of which 1 survived the thaw).  They didn't take.

- We quickly adopted a second set of embryos.  The last of 6 embryos we got resulted in a twin miscarriage at 8 weeks.

- Later we learned that the donor family from match #2 experienced chronic miscarriages.  I now believe based on embryology reports and their history that they had an embryo quality issue on top of some other ones with her uterus.

- After the last miscarriage, the doctor suggested (surprising us) that we try OE.  He had heard of DHEA supplementation helping some women.  Also, several times through my monitoring they were noticing some of my own follicles.  My age was a driving force behind this decision for the doctor, because at the time I was 31.   I was reminded of my response to the small dose of meds that I took at clinic 1.  They thought it was promising.  We agreed to try, because we didn't want to do donor embryos anymore.

- At the time we thought we would pursue traditional adoption concurrently, but we decided it was too much at once.  Also, our social worker did not want us to do both at the same time. So we didn't pursue  the adoption.

- That IVF cycle produced a better response than we ever expected - we made 6 blasts that survived to transfer.   One resulted in a pregnancy, which I lost at 5 weeks.  Another was a negative and one had HCG of 1.0.  I don't even know if I could call that a chemical.   But something was trying to happen.

- At my request, I had a panel done for repeat losses. I tested positive for one mutation of the MTHFR gene.   Dr. Schoolcraft says that up to 40% of the population could have this mutation and it is not a factor in my miscarriages.  Everything else was clear.

- I did some more research and learn how hard it actually can be to get pregnant with donor embryos due to quality issues.  We have limited emotional energy left, for what we feel are not great chances, so we close this door.

- The doctor at my second clinic that (did my IVF) started to suggest things that made me feel like the doctor is grasping at straws.  Dr. Schoolcraft called some of my protocols "voodoo".  I was scared of the risks of the things he was suggesting and his lack of experience in those areas (I didn't want to be his first IVIG patient - no thanks).

- We decided to get one final opinion from CCRM.

- Dr. S at CCRM thinks we have an embryo quality issue with our past losses, not a uterus issue. He is most worried about my highest FSH number, and wonders about my egg quality.  He says if we can get one normal embryo (as determined by CCS), that he would give us a 50% chance of success in that cycle.  He said he didn't know if we make normal embryos.  He thought we might get one from one cycle of IVF.  He said that if we can do 2 IVFs that it would be reasonable to proceed with this option. He gives us an 80% chance of success with donor egg.

- We decide to do one more IVF because we feel we were close with our last IVF.  I feel like the 2 (maybe 3) pregnancies we had were evidence that my body DOES want to grab a hold of the little embies.  It does want to be and stay pregnant.  I think the embryos just weren't a good enough quality to survive.

- We think the slight change of protocols, the greatly improved lab with the CCS could make the difference for us.  Our last IVF with 6 embryos was the biggest factor for moving forward.

- We decide that we will quickly move to DE if our embryos are not good from the CCS.

- I have a laparoscopy and it shows that my uterus looks great.  The doctor tells us that if we can put a normal embryo in there he feels we have a good chance of it working.

- Now we have been sidelined with two cysts and I'm wondering if this was all a big mistake.  D's getting exhausted from this all (as I am).  I know in his heart, D doesn't think that DE will be any different.   He thinks we have a uterus problem.  I don't.  I think that we have an embryo quality issue not a carrying issue.  This is why I'm hesitant to move on to traditional adoption.   I want the experience of carrying.  I feel like IF has ripped everything away from us that was natural and good about this baby making process.  I just want this one thing to be "normal".

Words from my 2012 income tax

I got a print out from my clinics outlining the expenses we've paid for 2012.  The statements are very detailed and very helpful.  It's a lot easier for me to keep track of my expenses with one detailed report from each clinic.  I'm thankful for this.

The report also tells a story that makes me cringe.  It kind of sounds like a really creepy poem to me.   Not including all of the blood work and ultrasounds and some other things, it says:

Abortion, threatened
Abortion, missed
Missed abortion, surgical, first trimester
Payment
No insurance

Ovarian failure
Ovrian dysfunction
Follicle puncture
Payment
No insurance

ICSI
Culture
Hormone imbalance
Abortion, threatened
Payment
No insurance

Abortion, missed
Pregnancy, unconfirmed
Ovarian dysfunction
HCG
Pregnancy unconfirmed
Payment
No insurance

Failed or canceled cycle
Payment
No insurance



PS) The grand total last year that we spent on medical expenses was about $43,000.  It feels like we spent a million.

April showers

My lovely D has been having a really hard time lately.  He's feeling really low.  As he tells me, all of his buckets are empty.  His career bucket, his spiritual bucket (largely because I've been very disconnected), his family bucket (he views as children), his health bucket (he views as how he is taking care of himself), his friendship bucket.

I try not to take it personally when he says this.  Especially because all I'm really thinking is "what about me? What about us? Isn't the us bucket good?"  It's kind of the one thing that I hold on too.  I've told him how I feel (similarly in many cases) but that it's the us bucket that keeps me going.  That if I didn't have him, if I imagine my life if we had never met, I would feel much worse than I do today.  I'm sure of it.

I've realized he thinks of the us bucket a little differently than I do - to him the us bucket is a lot about how I'm feeling.  Is this the old adage "happy wife, happy life". It makes me feel crummy that I can't be happier more often, for his sake.  I view the us bucket more about how in sync we are and how we are getting along on a day to day basis.

Last week was especially difficult for him because we were babysitting my best friend's two kids.  I've been encouraging her to go away with her husband since a year after her first was born.  They've only ever taken weekends away, and their marriage has been strained at times because of it.  They decided to take a trip, and I watched the children from 3pm to 8am.  During the day, they went to school and their baby sitter's.   D spent a few evenings with us and put the 2 year old boy to bed a few nights in a row.  The boy is cuddly, giggly and happy.  He has the brightest blue eyes and wavy blonde hair.  He's just starting to talk.

The little girl is the one who I measure our years by infertility by.  Her mother and I both started trying within months of each other.  She got pregnant right away.  I hate to associate something negative with such a beautiful little girl but it's hard not too.   She's in her first year of kindergarten this year.

I thought the boy liked me until I saw him with D.  He just loves being around men.  He cuddles with them, and wants to play with them.   My friend says he's a Daddy's boy.  So it's no surprise to me how much he loved playing with D.

They played so easily.  D even put him to bed was such a nice thing to watch.  It was also difficult from an infertility perspective,  as I know you can imagine.  This was D's most emotionally significant child care experience.  He told me that it made him realize even more about what we are missing.  And about what other people have.

On Friday, I went to my local clinic for my CD2 baseline blood work and ultrasound.  I've been doing the preparatory meds for a month and my blood work has so far been all been good.  I was feeling positive about the upcoming cycle.  I was thinking that this could be our time, maybe, just maybe.

During the ultrasound I was chatting away with the nurse.  I answered her questions about our new protocol.  I told her about our travel plans.  I wasn't even paying much attention to the ultrasound screen.  Normally I would have my eyes glued to it.  The nurse waited for a lull in the conversation and said "I think you have another cyst".

I looked up at the screen to see another large black hole on the ultrasound screen.  They took extra screen shots of it and sent me along with a package of information regarding the previous cyst and this new one.  It is on the same side as the last one, and slightly larger.

I was and am so confused.  I had the laparoscopy in February.  The doctor said he didn't see the cyst, that it had gone away.  I questioned the CCRM nurse about this and she said there is a possibility that the cyst was inside my ovary which is why he didn't see it.

I'm so pissed.  I'm wondering why they didn't do an ultrasound to confirm that it wasn't there. If it was why didn't they aspirate it?

My reaction to all of this is a hefty dose of numbness.  It's just another bump in the road.  I'm pissed and disappointed but not devastated. The nurse told me to wait until I got my blood work back to see if this was an estrogen producing cyst or not.   She said not to be so sure that the cycle was cancelled.

I came home and told D.  He was very angry and sad.  He told me (again) that he's done with all of this.  This time it was with an intensity that I haven't seen before.  Maybe that is because of how down he's been feeling, the babysitting, the other things going on in his life.  He told me he wants to foster. To do something.  Because in his mind this is not going to work.   Ouch.

That my friends, makes my heart sink more than anything.  He's always been more negative about all of these infertility procedures.  I've just accepted that as the way he copes.  And to be honest, he's been right.  Nothing has worked.  We've only been dragged through the mud for over 5 years.  Why should we think otherwise?  Why am I doing this to him?

Later in the day the nurse called back.  My estrogen was 33 and my progesterone was 1.3.  I regained a slight bit of hope.  When the CCRM nurse called though she said that the estrogen level was ok, but the cyst was too large to proceed.  Dr. Minharez (sp?) consulted on the case in Dr. Schoolcraft's absence.  She said that with a cyst over 15mm (this one was 17 x 21mm) that I can't proceed.  She officially cancelled the cycle.  We now are waiting for Dr. Schoolcraft to return.  Perhaps we will try a different protocol.  Maybe we won't.

Things I'm left wondering... Is this our final sign to move on to egg donation? Is D really at the end of his rope or was he just responding out of his frustrated and depressed state?

2 moments

I had a moment today.  Where I was thinking about the mental health issues in my family tree (mostly depression and anxiety).  I was also thinking about how I'm pretty sure that my skin is aging faster than any of my friends.  And a few other things.

All in all, I'm fortunate that there is nothing tremendously bad in my family tree.

I can't help but think about what my family medical problems would look like on paper.  And how nice some of the egg donor's profiles look comparatively.

I'm really hoping this cycle with my own eggs works out.  Most of that hope though is around not having to go through another round of bad news, or worse yet a loss.   I'm so ready to be a Mama.

************

This morning at boot camp (yeah me! I'm still going!!), we were doing shoulder push ups.  While I mostly despise all of the exercises, this one is especially yucky.  I have strong muscular legs but weak arms.  The athletic looking girl beside me told me she hates these.  I said me too!  Then she said she hates them because she's pregnant and they make her feel sick.  :S

I spent a few minutes later on wondering if she was going to ask me if I had kids.  Thankfully, she didn't.  In my head I was mulling over saying "No, I've got infertility".   I felt like saying it might ward off any future talk with her on the topic of her growing bump (which is non-existent right now).  I don't know her at all but there's something kind of freeing I find about telling a stranger about a little secret sometimes.

It's better she didn't ask I think, and that I didn't tell.