Wednesday, 30 April 2014

Quick and dirty

We had another regroup with Dr. S.  It lasted all of 7.5 minutes.  He answered our questions, but didn't offer anything more except to tell us that he thinks we are 'thinking clearly about this".

Here's what he told us:

  • He thinks we will lose 1 to the thaw, that would have died anyways when we tried to thaw it for  transfer.  He didn't think we would lose many more on the next thaw, but didn't give us a number. 
  • It will take 2 weeks to get the results of the testing. 
  • When asked how many of our 10 embryos does he think will be normal?  He said he doesn't know.  He said that the sperm is a question mark here.  (But - let's be honest, the eggs could be questionable too, although admittedly less likely so). On average the donors have 20% abnormal embryos. (That's great news). 
  • Should we look at 1 or 2 with CCS?  He still thought we should transfer 2 with my history.  (Interesting). 
  • If we transfer 1 normal and we lose it we should start seriously thinking of a gestational carrier.  Ouch.  Okay. 
Someone asked for the ratings of our embryos.  Here's what we have:

10 embryos frozen. Eight were frozen on day 5 and two were frozen on day 6. The grades are: 4AA, 5BB, 4BB, 3BB, 2/3, 4AB, 4BB, 2/3, 6BA and 6BA.

I emailed the nurse and said we're going to go ahead with the CCS.  

Dr. S was the same as he always has been with us, he answered what we wanted to know, but didn't give us anything more.  I find that kind of annoying.   

Dad's here tonight and tomorrow,  so that's all I can write for today.   We're having a good time. 

Tuesday, 29 April 2014

Going for the kill?

Overkill... that was Dr. Schoolie's word for whether we should consider CCS for our remaining 10 embryos when we asked him a couple of weeks ago.

We were satisfied with his answer at the time, but I've had some time to think about it and now I'm not so sure.

I believe that knowing how many normals we have left will dramatically change how we proceed.

Scenario 1: No CCS, The original plan. 
  • If I miscarried again, we wouldn't know if it was because of an abnormal.  
    • It would be more difficult to determine when it would be time to retire my ute. 
    • I don't think I have enough stamina left in me to go through any more losses.  Especially if the loss was due to an abnormal embryo, that never would have most likely never had a chance of making it.  
  • I could have a baby on the very next shot, and save ourselves the cost of CCS.  Oh, to dream!  (10 embryos is $6,875 + $1,000 because they were previously frozen = freaking gag me.)  
  • I would be seriously considering transferring 2 embryos at a time, at Dr. S's recommendation.   Having multiples and the complications and loss that could happen because of this scares the crap out of me. 
  • My clock is ticking.  I can't stand the thought of doing this all for many more years.  Six years has been enough.  Miscarriages and FETs take time.  My body seems to get pregnant even when the embryos are abnormal.  Of course, I don't know this for sure.  Especially for our last cycle.  I am quite confident that my first two miscarriages (from our own IVF and the donor embryos) were because of abnormal embryos.   In all reality, to do 5 transfers with our 10 embryos would take over a year.  If more miscarriages or cancelled cycles were thrown into the mix, it would probably be double that. 

Scenario 2: CCS reveals all DE embryos are abnormal:
  • This could happen.  This is us after all.  And Dr. S says there is a small chance of this because D has wonky sperm. 
  • We would be devastated.  I don't even want to imagine this. We would have flushed a lot of money down the toilet on this DE escapade.   However, knowing this information would prevent us from:
    • Throwing good money after bad.  Meds, lost wages, travel costs and FET costs.
    • Emotionally, it would be less painful to get one big dose of bad information than have it spread out over many BFNs or miscarriages.
  • Knowing this would save us a lot of time.  

Scenario 3:  CCS reveals some normals:  
  • Dr. S said 3-4 normal embryos would be a realistic expectation when we started the DE process based on how many embryos we have.  
  • We would know what we were working with.  How many transfers to possibly expect. 
  • We would only transfer one at a time.  Less risk to me and babies. 
  • We wouldn't have to transfer the other 7 abnormal embryos. 
    • Less emotional heartache, especially if there was one or more miscarriages. 
    • Financially, we could avoid the meds, travel, lost wages and FET costs for (maybe) 3 transfers? 
      • Math: If we transferred 2 at a time, assuming all survived the thaw, we would be doing at 3 extra/unnecessary transfers.  FET is $5,005 costs, say $2,500 for meds (Lovenox is expensive), and $1,000 for travel.  These are low estimates that do not include testing that would need to be updated.  The grand total is $25,515 vs. the $7,875 cost of CCS.  
    • Physically,  I would not have to take the drugs or have the side effects for those transfers.  Amen. 
  • If I knew that I miscarried a normal embryo. 
    • It is very important information to know, but not the complete picture.  I now know that 50% of early miscarriages are with normal embryos. 
    • Knowing this information would be more difficult for me emotionally because of the implications using my uterus.  
    • If I put all of the normals into my body and they don't work, I will have to face the music that I've done all I can do with my body and it's time to move on to something else.
  • We could transfer a normal embryo and have a baby straight away.  (I'm ready for this, universe! Pretty please?)
    • If we had a child from these embryos, we would know exactly what we had left (if anything) in the freezer.  If we didn't have anything left, but had one child, we might make the decision to end this journey hell trip there. If we had 2 embryos left, and we transferred them, I would of course have my hopes up for another child.   Knowing how many normals we have would give me a big reality check through the rest of this process if we were lucky enough to have one baby.  
    • If we try some normals, and have one or more miscarriages, we may be able to transfer our last normal(s) into a gestational carrier (if someone I know will do it - don't think we can spring for the $100k for a GC). 
    • Okay, you can have a good laugh here, because I am.  But if we had several extra embryos (ha!), we plan to donate them to another couple.  This is because we were recipients of donor embryos and we would like to pay this generous gift forward.  If I knew that I had say, only one normal embryo left, no matter how many kids I had I would just transfer it.  If we didn't CCS and had say, 4 remaining embryos, after our family was complete (again, I laugh at myself that I'm even writing this), I would probably be thinking of donating them.   Those last 4 could be all abnormals.  I don't want to give another couple abnormal embryos.  And, I don't want to be involved with donating any embryos if I can avoid it.  (PS- Did you know that to have the option of donating the embryos CCRM charges approximately an extra $750 in blood work - that was a nasty little surprise.)

Risks to the embryos:
  • We are waiting to hear this from Dr. S during our second regroup on Wednesday. 
  • Some of our normals might not freeze well a second time, or survive thaw at transfer time.  We could harm an otherwise normal embryo.

We have a lot of hope still tied up into these 10 little embabies.

We'll see what Dr. S has to say about all of this Wednesday.  I wonder if he'll change his tune?

What do you think? What have I missed?

Monday, 28 April 2014

Asking for what we need

I know that when we ask for what we need from those we love we don't always get it.  It is risky, and can add pain to an already unbearable situation.  I am so grateful for the way that everything developed over the course of this week.  Without your guidance, and my hubby's I am sure that things with my friends would not have turned out as well as they did.  

I mentioned in this post about my conversation with BF that I sent an email to thank her.   This is what I wrote to her.  Her response back to me is one of the most heartfelt things that anyone has written or said to me, outside of my marriage and the kind words you offer me here.  

I wanted to share it as an end to this week's chapter.  I'm posting it here also because I want to be able to refer to this again, and again if I need to.   I'm remembering that sometimes beautiful things do come out of the darkest of times.  



Thank you for being there for us.   For calling us, for inviting us over, for dropping of packages, for the texts and calls asking how we are doing.  For remembering me on Mother's Day.  Thank you for letting us know that you feel our pain too and you are care for us. 

Thank you especially for listening last night.  Your support and understanding to us after this loss, and throughout this process has not gone unnoticed and has helped us through many hard times.  

I wish last night, (and many other times), that I could have better expressed our gratefulness more adequately.   I am sorry I haven't done a better job of that yesterday, and in the past. 


PS) This is a video that circulates a lot in the infertility community.  I was thinking of sending it to A and A, and maybe a few others.  What do you think?

(The link doesn't work on an iPhone). 

thanks for the email J.

 I really appreciate that you guys came over on the weekend. it was our hope that the sandbox project would be a distraction to you rather than a painful reminder or we never would have asked you. i hope it turned out that way but we probably didn't time that right ....    as you know we are thrilled with it and can't thank you , F-in-law,  and D enough. 

thanks for letting me know how you've been feeling as you go about trying to manage the grief you are faced with . i am so sincerely sorry that you are not receiving the support you need from friends at this devastating and lonely time .  I know you recognize our efforts in trying to be supportive but truthfully, your situation just devastates me so much too, that I find difficult to mobilize my supportive thoughts .I'm personally sorry for this . Because we care about you guys so deeply, we are also hurting. 

I know for certain that there are many others hurting for you too , and I am sorry that you are not getting those messages directly or they haven't come at the time you needed them most. 

please know that we continue to pray for you daily , we will forever cherish  our friendships with you and D.

I can think of many times I have thrown myself onto your front porch in times I've needed your support. please know you can reach out anytime too! 

Also , I just watched that incredible video and yes , I think that sharing it is a great idea . it was very very powerful .   thx for sharing if with me .

lots of love , ttys BF 
Sent from my iPhone

Houston: We have contact!

There was glorious progress.

Contact #1:

A text from one friend.  She was the one who called and left a message last week.  It said she was thinking of me, and asked if I had time for a chat?   I said I did, to call anytime and she called me within a few minutes.

Not going to lie, the conversation was a tad awkward.  But not dreadfully so.   There was no small talk.  The first thing she asked was how I was doing.  I replied, "kind of crappy".   She told me that she was so sorry, and said a few other things along those lines.

It felt awkward, so I asked her how she was doing?  She sounded sick and she told me that on Friday they had to put her mother-in-law in a retirement home somewhat suddenly because of her Alzheimer's.   She and her hubby have had a lot on their plate too.  I empathized with her about that.  It really must be hard for them, and I wanted to let her know that I know she's been stressed too.

In my typical style, I started to feel guilty.  They have been going through their own big stuff too.  I told this to D and his was response was "Ya, but it takes 5 seconds to send a text'.  Good point, I suppose.

I made a mental note to follow up with her in a week to see how MIL is adjusting and how hubby is doing.

She asked if I was sure I was feeling up to the weekend visit.  She said it was ok to reschedule.  I said I didn't know, that I would like to see everyone.  I would see how I was feeling in a couple of weeks.

At the end of the call, the conversation went back to talking a bit about infertility and adoption.   Honestly, after not sleeping last night I wasn't in my best form to have the conversation.  I felt a bit tired and lazy, and also like I wanted to give her the light version of everything.  No need to shock her when she was trying.

She told me to call her anytime I wanted to talk.  I told her that I had a hard time doing that, knowing of how busy her schedule was.  She offered a solution.  She said to text anytime, that her kids were at the age now where they will watch TV.  She said anytime I wanted there was a 58 minute movie that they loved, and she'd pop it in anytime and call me.   I thought it was very sweet of her to say that.

All in all, the call was somewhat uncomfortable, and felt a bit forced to me (because it was!).  I remind myself that part of this experience was about spreading the word, and giving people a glimpse of what I need.   I hope that this conversation really just set the stage for the future more than anything.

Contact #2:

The other friend texted to check in on me, the one whose mother was sick.   We chatted briefly about her mother via text.  It was good.  I wasn't mad at her because she called me a few times already.

Contact #3

She texted and said she was thinking of me everyday, and asked me how I was doing.  She offered to come down and visit me (we live 2 hours apart).  I texted back.  She didn't write back yet.  She's a bit sporadic with texting on a good day, so I'm not surprised.   I'm happy though that she reached out.

Contact #4

A bonus contact.  My youngest brother called.  I'm one of five siblings.  We haven't talked for more than a couple of minutes here and there in a couple of months.   Part of the way through the call I said, "Things have been pretty rough in ___(where we live)___.  Have you heard?"  He said that yes, our Mom told him.   Then, he actually said "cue inspirational phrase here".   Wow.  Just wow.  His response was so brutal, but I had to laugh at his honesty.  Then he said "Well, try to stay positive.  Everything happens for a reason".  I told him I used to believe that, that I don't anymore because thinking that someone was doing this to me for some purpose didn't make me feel any better.  He said sorry, then he changed the topic.

My brother has some learning to do in this department I'd say.  Actually, it made me feel bad for his long time girlfriend.  I hope that he is able to offer her more support when she needs it, than what he demonstrated here.

I took comfort in his effort to call more than his words.  He tried, and I appreciate that.

Contact #5

Holy cow, did the universe respond or what?  5 contacts!

My Dad called and offered again to come down for a visit.  He's offered this twice already, but I turned him down.  He lives a 5 hour drive away and honestly I just wanted to sit around and cry all day.  Not sit around with my Dad and think about how I wish I was alone and crying.

He had a little project that he wanted to do (it's a table that I need with some customization).  He found a table base and suggested that we go to Father-in-law's shop to build it.  My Dad's handy too.  It would be a project for the three of us.  He said he was bored and looking for something to do.  Really, I think it was a little of that, but that he's also worried about us.

I liked the idea of the project, and I relented.  He's coming Tuesday night.

Missing contact:

Friend who didn't even bother to text or do anything last week.  I found out that no one had been able to get ahold of her to tell her the news, but she found out Saturday.   As of today (Monday at noon), she had not sent a message or anything.  She's the one who I'm not close with and so I don't even care.  I would like to dis-invite her from the weekend (and perhaps the rest of my life) but I won't do    She's always been the one in the group who is not as connected, and always has been.  No tears shed over this one, but it has been noted.

Reminding me of the past:

For some reason all of this reminds me of an experience that I had in university.  I was seeing a guy who would treat me ok sometimes, and then not call for stretches of time.   I can't believe I ever put up with being treated this way, but I think I was a bit blinded by infatuation.  Actually, this happened twice now that I think of it.   At the time I was feeling like I really wanted a boyfriend, and truthfully I was kind of desperate.  There were no other boyfriend prospects on the horizon.  After some agonizing, thinking that maybe something's better than nothing? I dumped their asses.

You know what?  I thought I would feel sad that I was alone.  But, it felt amazing.  Freeing.  Empowering.   It was hard, but told myself that I mattered and deserved better and I did something about it.   This all feels strangely similar to me.  Except better.

Sunday, 27 April 2014

Sandboxes and support

Several weeks ago, when all was well, my BF asked if my father-in-law, a retired carpenter if he would build them a sandbox for their two kids, ages 3 and 6.  She knows he loves working on anything with wood.  (Aren't I lucky to have a carpenter for a father in law? I think it's awesome!)

While building the sandbox, I'm sure it wasn't ever far from his mind that he wishes he was building this for his own grandkids, something he may never get to see as D is an only child.  It makes me sad to think of him, thinking about this.  It reminds me that our infertility isn't just our loss, it's theirs too.

Father-in-law doesn't like the finishing part of projects.  So, the plan was to deliver it unfinished to them.  I'm sure he figured would be easy enough for them to sand it and stain it.

Knowing these friends, I knew that they probably wouldn't do that because they are busy and not that handy.  And once the kids saw the box, I know they would be so excited that I'm sure they wouldn't want to wait until Mom and Dad were able to get the supplies to do this, and then get it done.

I decided that I could finish the sandbox.  I'm a pretty good painter (of walls and furniture etc.), and I have all of the supplies.   I like doing things like this, and hadn't done anything in months.  I like the feeling of accomplishment that I get from seeing something go from unfinished to looking great.

When I told D that I was going to do this, he was surprised.  I knew what he was thinking, even though he didn't say it.  "Why the heck are you going to put yourself through that?"  I kind of wondered the same thing, but decided that I would try not to think about what it was that I was finishing, and just look at it as a project and a way to help a friend.

My BF and her husband invited us over for dinner.   They had also invited D's parents to thank them, but they couldn't make it.

They've made other offers which we haven't accepted over the past couple of weeks.  While we didn't feel completely emotionally ready for it, we decided to go anyways.   The plan was to drop off the sandbox and have a nice meal, then hopefully head home before their kids needed to go to bed.

When we arrived the kids and their parents were equally thrilled with the sandbox.   D's Dad really did a great job, and the finishing came out beautifully.  They were very appreciative for it, thanking us many times and telling us how great it looked.  I'm sure they were laying it on extra thick, to boost our spirits, yet their praise and gratefulness also felt genuine. 

We had a nice meal, and watched the kids play outside in their new sandbox.  They didn't care that it was chilly cold outside. They were having so much fun.  It was nice in a way, because it gave us a chance to have more adult only talk.

While they were outside, BF brought up the flowers that we sent to our friend's mother.  I think she was a bit baffled by it too.  I told her that I thought it was a bit weird, that we didn't send flowers to anyone else's parent who has been sick, including to her father who had a heart attack this year.   She said that she thought this could be different because her spouse had died a year ago.  She thought that this was a part of that decision.  I said I thought it was nice, and I hadn't thought of it that way.

I told her that also kind of confused about it.   I said that I know she is going through a hard time, but it just made me feel a little funny.  That after everything D and I had been through, recently that for some reason it just stung a little bit.   She said she thought about that too.

She asked me if I had talked to any of our other friends.  I said just one, and another had left a message.  She seemed surprised.   I said that I had received a couple of nice texts right after everything happened, but I thought they might have connected with me again afterwards.

She said she talked to one of the friends  a couple of weeks ago, and she said she was going to call (she's the one who left the message).  I get the impression that the purpose of their call was to commiserate about what had happened to me, and plan what they were going to say.

Our conversation ended as dinner preparations got underway and the kids came inside.  

The kids played with D and I, climbing all over us.  Sitting on our laps.  The little boy, 3 stayed on D's lap for probably a half an hour.  Seeing that was one of those bittersweet moments, as I'm sure you can imagine.  It makes my heart swell.  When your heart is full of holes though, everything just ends up leaking out.   We have so much love for these kids (and their parents), that it is hard to turn away from them. We want to be a part of their lives, but holy shit was that hard. 

After dinner we were all sitting around.  I was starting to feel like it was time to go home. I was feeling sad and tired.  The kids and men were watching baseball videos on the laptop.  BF and I were sitting on a couch, quietly talking.

BF asked about the upcoming weekend with friends.  I said that before all of this happened, that I was really looking forward to it, but I'm not sure anymore.   I told her that my feelings were hurt that noone reached out more than they did.  

In a quiet, choked up voice, I told her a lot of what I was thinking, things that came easily to mind because I had written the letter.  She sat on the other end of couch, agreeing with me, wiping the tears from under her glasses.   I was a bit uncomfortable with other people in the room, but it seemed like everyone was just zoned in to what they were doing.   It never occurred to me to ask to talk to her in another room.

She listened and I was grateful.  I told her a lot of things.  I think the letter really helped me present my thoughts to her.    I told her that I don't know if everyone is just talking about this amongst themselves, forgetting that no one is talking to us about it?  She agreed that, yes this was probably happening.

She asked what she could do.  She suggested that she could reach out again to them and suggest that I was now ready for contact.  I said yes, that would be good.

She said she hopes that we know that they were trying to be there for  us.  That she didn't know what to do.  That she thought about buying flowers, and doing other things.  That nothing seemed to be adequate (she meant this in the way that this loss is so big).  I told her that I could feel her trying, and that I was grateful for it.

I told her that I know that at our age, not a lot of people have experienced loss.  That if something happens to an older person, that their support group has experience with it.  In that moment, just saying the word loss made my tears go from puddles in my eyes to streams down my face.

I told her that I feel like people don't realize that this isn't just a miscarriage.  I could get past that a lot easier, but this was... and then my voice cut out.  If I had kept talking it would have just become a loud sobs.  I didn't want to draw the attention of everyone in the room.   All I could do was gesture with my hands, things stacking up.   She said for me,  "this is a compound loss".   She's a social worker and knows the terminology.  I shook my head yes.

I cry again just thinking about those words.  Compound loss.  That has been our last six years.

I said that I'm at a point where I don't have much emotional energy left.  That I know some friends are just for casual fun, but some are supposed to be more.  That I thought that these were some of my 'more' friends.   That if they aren't my 'more' friends than I just need to know, so I don't build resentment towards them.

I told her that this is not a problem that is unique to them.  I reminded her about the conversation that I had with my sister this year.   I said that we knew embarking on this past cycle, that this could be really hard on us.  That we purposely opened our circle up a bit wider, to fill more people in on what was going on, because we knew if we got more bad news that we would need more support this time.

I told her that I need less kid talk if we do this weekend.  Not an absence of kid talk, I don't expect that, just less.  She suggested that we don't need to do the weekend, or we could focus on smaller groups.

I told her that in a way I would view the weekend as a bit of a test.  That if there wasn't more sensitivity that maybe it will be time for me to step away from the group for a couple of years.  I regretted almost instantly saying this part.  It was too much, but at this point stopping my emotions was like trying to use tinfoil to cover up an impending volcanic eruption.

I told her I knew that this anger could be just the grief talking.  She reassured me that my concerns were real.  That she thinks it is that people don't know what to do, not that they don't care.   I told her I wasn't expecting much more from them, just maybe another message.  I don't know.  Something.

I apologized for dumping this all on her.  But honestly, I felt bad for the awkwardness and the timing, but not for the information.

I thanked her for listening.   I gave her a hug and she cried more.   I know she feels some of our sadness.  And while I never want my friends to hurt, knowing this is somehow a big comfort.

It was time to go home.  By now I'm sure the men knew something was going on, if not from our quiet words,  but from our red puffy faces.  They knew, but they didn't say anything.

We got in the car and as we rounded the corner from their house, I started sobbing.

I worried and stewed about the events of the evening into the early hours of the morning.  Replaying the conversation in my mind.  Wondering if I said too much or if it was inappropriate.   This brought on a huge headache and a nice dose of insomnia.  Somehow at 3:00 am,  I even managed to break out in hives all over my hands and wrists.  Grief spots.  That's a new one for me.

Regarding the letter, I appreciate your continued support and really I appreciated hearing your honest opinions.

Two things are themes from the comments.  First, that I can't pretend that this is not an issue for me anymore.  I've been using that strategy for six years and it's not working anymore.  Secondly, that sending a blanket letter may not be the best approach because I have different relationships with each one of them.

I know that writing letter and reading your comments really helped me.  It helped me to clarify my thoughts, allowing me to have the conversation last night.  While it wan't perfect, I think it was a huge step in the right direction.  My hope is that my BF will take this information, and help me spread the word.

I'm thinking now that I don't hear from them in a meaningful way, over the next few days, I may decide to cancel the weekend. That will be their message to me about what kind of friendship they are able to have, and want to have with me.  I will let them know it's because we are still grieving and aren't feeling up for company.

Re-reading this post has made me feel much more grateful for my BF.  I sent her a thank you email and told her how I appreciated her and everything she has done to support us through this journey over the years.

Saturday, 26 April 2014

My draft letter. Looking for your feedback.

I'm thinking about sending this letter to those friends.  What are your thoughts are on it?  How would you feel if you received this letter (if you were a fertile)? What should I take out or add?

Honestly, I'm not sure if I have the courage to send this.  It leaves me feeling very vulnerable.  I don't want to alienate or anger these friends.  It's hard to know when to listen to the little voice telling me to stop.  Is she being a coward or saving me from more grief?


This week, my feelings were hurt.  I hate to admit it, and it's uncomfortable for me say anything about it.  But I feel I need to. 

As you know, two weeks ago, D and I suffered another deep heartbreak when we lost our fourth baby.  

I know that every loss is different, and everyone copes differently.  And things could be so much worse.  For us however, this new loss just adds salt into an already very big wound.  After almost 6 years of failed fertility treatments and losses, we have learned that (for us), the grief of infertility and loss is compound.

We are exhausted, discouraged and feeling very isolated in this experience. 

While we hope the road ahead from here will be a smooth one to parenthood, we know all too well that this may not be the case. There could be more rough road ahead.  We are very scared, especially because this journey has already left us so low. 

I know we want to be there for each other, because we do things like we did for E and K this week.   Seeing the support for them made me happy, but it also made me yearn for a little more of that myself.  Of course, I'm not asking for flowers.

After hearing our news, some of you reached out right away.  And it was genuinely appreciated.  That first week was filled with nothing but pain and tears, and a message was the perfect thing.   The week after, though, I heard mostly silence, and it makes me sad.  I wonder if it is because I have not communicated in the past how devastating this has all become? 

I don't expect anyone to say or do something to make us magically feel better.  Because trust me - I know there is no magic pill, only time, a listening ear, or a quick note to tell us you are thinking of us.   

I'll sign off by sharing this video that shows a glimpse of what infertility is like.  If I could, I would add something about to the video loss, because for us, infertility is only half of the equation.   

(This video won't work on an iPhone.)


I wrote this for something else, but thought I would share it with you too.

7 years trying
Countless tests
8 procedures
5 surgeries
5 canceled cycles
8 months off for stroke rehab
2 donor embryo families
1 failed egg donor relationship
1 homestudy completed and updated again 2 years later
1 adoption agency, we are a "family in waiting"
3 pregnancies and 1 chemical
1 set of twins, lost
1 singleton, lost
1 singleton, after hearing a longed-for heartbeat.

Thursday, 24 April 2014

Update on the friend situation

I have read and re-read your comments from yesterday.  Thank you for taking the time to say something.  It really helped to know that I am not alone in this.

It also has given me some more things to think about regarding how I am going to handle this.   I'm still letting it all marinate as I try figure out what to do.  I want to talk with D more about it too.  I will let you all know what I decide.   I welcome any of your continued thoughts.

To add to this story though, yesterday two things happened in this particular friend group.

The one that I told about my miscarriage (not my best friend), reached out to see how I was doing last night.   Hallelujah!!  She listened.  It was such a relief.  It was like a weight lifted off my shoulders.

She then told me that her mother had been very sick and in the hospital this past week (but will make a full recovery).  I listened to her about this, let her talk until she seemed to get it all out.  Asked her questions, expressed my empathy for the situation.  I felt like we both were there for each other.  It was good.

I know this is what kept her from calling me sooner.  She has a lot on her plate, and I understand.  I feel better about my friendship with her.

While talking to her, I had in the back of my mind that I wanted to hint to her to share with the others just how difficult this is for me.

At the end of the call, she told me to call her anytime.  I told her that it was hard for me to do that.  I said that I appreciate that everyone says that, that it is very kind.  But the reality is, is that it is very hard for me to call someone up who busy with their kids and work life and just this all dump on them.   She said she will call back in a few days.

Today, someone else sent a group message on Facebook.  It asked if everyone wanted to send flowers because of our friend's sick mother.  We have not sent flowers in the past for anyone else's parent that has been in the hospital.

It shows me that they want to be good friends to each other, but in this case, they really just don't get it.

I've got some more thinking to do.

Wednesday, 23 April 2014

Feeling pissy about some of my friends

Some of my friends and our family have come through on the empathy and support department.    Especially when they first heard the news of what had happened.  Kind words flowed in, and they lovingly expressed that they were "there to talk whenever".  At that time, I didn't feel like I could form a sentence through my tears.  I thanked them, and tried to leave the conversation open.

I hoped that maybe after some time had passed, that they would have reached out with a call, or sent a card.  Very least, sent a text to check in.

I am disappointed in those who haven't.

I feel like even saying this makes me ungrateful for the people have shown up for us.  I feel like a  hypocrite, because I knew in advance that not everyone would behave the way I hoped.   I thought that I would be able to wash the bad down with the overflowing good.

That isn't exactly how things have gone.

There are a few people that have not reached out and it's very hurtful to me.   I try to remind myself of how busy they are, about how they may not realize that this is such a big deal.   I try to remind myself about how we have so much more support in general this time, because we have shared our journey more widely.

Today, though, I'm feeling angry, and very, very sad.   It's like my grief has pointed a laser beam onto the unpleasant truth that some people in our lives have NOT shown up.

Today, despite knowing how ugly it sounds, I am saying "Fuck those people that are too busy with their beautiful little families to spend five seconds of their lives seeing how we are.  Don't they know how traumatic this is?"

I don't think they get the pain and grief that is associated with everything we have been through.  How could they, I guess?  I've never spelled it out.  I'm their only chronically infertile friend, so I don't think they are getting a sense of things from anyone else.

I wonder angrily, if they think that a person who aborts baby in the toilet for the third time after six years of bad fertility news, just easily slips back to feeling like herself?  Do they think it's not a huge, life changing ordeal to have gone through all of this bullshit?  Do they not realize that this has affected our lives in so many ways - socially, spiritually, economically, physically, mentally?  Do they know isolating this experience is, and how absolutely deafening their silence is? 

I know it's probably mostly my grief talking.  It's seeping out and trying to poison otherwise healthy, longterm friendships with these thoughts.  It's trying to encourage me to say things that I will regret, share feelings that I should have left bottled.

I don't want to be a person that habitually dumps on their friends.  And honestly,  I haven't been that person.  I've gotten this far without doing that.  They don't know that this loss feels different, the wound is deeper, everything about it stings more, because they haven't asked.

I think about a weekend gathering that we were planning at the end of May.  I was going to host 5 of these friends at our place.  These are people that I lived with for four years in university and have kept in touch with for 15 years.  I consider myself close with all but one of the women, and I think they would say the same.  One of them is my best friend.

At the gathering, I was planning on telling them that I was 15 weeks pregnant.

Instead, a few weeks ago, I told my best friend, and then another one of them about the miscarriage.  She asked if I wanted her to tell the others.  I said yes, please.

I wanted to share with them what had happened so I could have their support.  I wanted to share because I didn't want to tell them at our weekend together.  I want their help now, when I need it the most, and so we could focus on just enjoying our weekend together.

Aside from my best friend, I got two texts back.  Ouch.

And while I know my best friend cares deeply, I feel disappointed in her too.

I find myself imagining this supposed to be special weekend, now that there has been so much quiet surrounding all of this.

I'm torn between thinking that I shouldn't need to burden them with my problems, and on the other hand, feeling upset about their silence.

Part of me just wants to cancel the weekend.  Show them in a big way that I am not ok.

I think this is a situation where I need to decide if I a) want to give up and accept their lack of support; telling myself that I guess we aren't that close anymore or b) discuss the situation now by making contact with them or c) dampening the mood that weekend by spelling out just how devastating this has been to us or d) do what I've always done in the past and just suck it up, and pretend like everything's peachy.

What should I do?  I don't know how much is too much to expect from them.  I can't tell what is reasonable right now, which is why I won't be doing anything for a little while regardless.

I would like to think that if one of them was down and out, that we would rally around her - support her, find ways to be there.   I know I would want to do that for them.

All I want is to be asked, "how you doing?", or "what this has been like for you?" And for them to sit back and have a good long listen.

I guess that's exactly what I do in this place, and what you do for me.   Thank you so much.   I am grateful once again, for you beautiful gentle people.

Tuesday, 22 April 2014

What happened at the ER and POC testing

They saw me within 20 minutes or so of arriving to the ER.  I was thankful for that.  We spent from 11am until 3:30pm having ultrasounds, waiting on blood work (CBC normal, HCG 14,000ish).  Because my blood type was RH positive, I did not need an RH shot.

The ultrasound showed retained products of conception (I still really, really hate that term) at the base of the uterus.

A nurse practitioner did a vaginal exam, and tried to remove some of the visible POC.  Unfortunately, she didn't have much luck.

We were waiting on an OB consult, but decided to go home and have the nurse phone us with the information.  We were feeling much more relieved just knowing what was going on, so this felt like a good alternative to spending more time in the ER.   We were also hungry, which fuelled our desire to leave sooner.

Not surprisingly, the OB gave us three options.
1.  Wait a while and pass the tissue on your own.   Get follow up ultrasounds and blood work.
2.  Take Misoprostal to *hopefully* get the rest out.
3.  Have a D&C.

The pain of the natural miscarriage is too fresh in my mind.  I can't do #2 any day soon.  I don't see the harm in waiting a while to see what happens on it's own.

Maybe this is what I should have done, rather than go to the ER yesterday? I don't know.  It's easy to second guess things after you have all of the information.  Or, at least that's where my mind usually goes.   Yesterday, I was on the fence about the decision to go to the ER,  but CCRM, a ER nurse, and the nurse receptionist at my OB's all suggested I go in.  And I was freaked out, so I took their comments seriously.   Oh well, I suppose.  At least we know what was going on.

The CCRM nurse gave me a follow up call to see how everything went.  She agreed with the OB's three options.  We also discussed the POC testing.

A few days earlier, the CCRM geneticist told me that they haven't been doing this testing with Natera for very long.  The geneticist told me the test would cost $400 plus shipping.   When I called them to double check the cost of the kit (at D's prompting), they told me that it is $400 with insurance and $800 without.  We don't have insurance.   If there was no sample to test (because we didn't collect it properly), they would still charge us the full price.

We asked Natera questions about the collection of the sample.  We were really unsure about what we collected.  What we have looks nothing really like the pictures they provided, but there really wasn't anything else to select.

We were torn with what to do.  Maybe nothing looks like the diagrams because it is still inside me?  I don't friggin know.

I told our nurse that we were really at a loss for what to do.  I told her that for $800 I could probably buy myself something really great to make myself feel better for everything that's just happened.  Although, sigh, I wouldn't.

She said that it is very confusing to do the collection.  That she has been in the operating room many times where the doctors are trying to identify things appropriately and it is difficult.  She said that she has seen a lot of results come back as normal female (which doesn't mean anything because it could be my own cells).  She reminded me that there was no right or wrong answer here.  That either way, our decision would be ok.

After taking everything in, we decided not to do the testing (again).  I don't feel comfortable with what we have collected.  We don't have an endless supply of money to keep throwing at this problem, and I already feel absolutely sick about how much we have already spent.  The result isn't going to change what we do with our next transfer.  The information may have added something to the conversation if our next transfer is unsuccessful due to BFN or things much worse.

So now, I sit back and wait.  I'm hoping for cramps to help finish up this show, so this part of things at least can all be put to rest.


(Note - CCRM wants a beta and an HSG or Sono after my next period to confirm everything is ok).