Posts Tagged ‘ttc’

“Thoughts on CIAW” by Cindy

It’s CIAW from May 24-31. If you are not part of any infertility support groups, then you may not know that this means “Canadian Infertility Awareness Week”, but there are quite a few of us that wish we didn’t.

I have to admit to having some ambivalent feelings about CIAW. On the one hand, I think it is absolutely important that people like me get a chance to talk about the life-changing grief that comes with wanting a child and being unable to have one.

Every day, parents get to talk about the joys and tribulations of raising children, and my Facebook feed is filled with pictures of children, links to articles about parenting, and even the occasional video of a mom justifying her inability to be both a good friend and a good mom. Because people who have children cannot possibly understand the sense of loss that we feel on a daily basis, our grief is often minimized with cliches and insensitive comments, so a week to spread awareness sounds good.

Our counsellor recently shared an article from a therapeutic journal that described the grief of infertility as being similar to the grief in losing an ability (“Narratives of Infertility: Reclaiming a Fertile Lifestyle” by Hewson, Colagiuri, Craig and Yee – I had difficulty finding a full reference, sorry) . There is the initial shock of the loss, then an adjustment period that never really ends. For the rest of my life, I will encounter situations in which I will suddenly be reminded that there are certain things I will never be able to do.

I will never know what it feels like to have a life growing inside me. I will never get to watch my child grow and learn and experience new things on a daily basis. I will never be that person that child is happiest to see. I will never get to see my husband fall asleep with our baby resting on his chest. I will never get a card or macaroni art on Mother’s Day. There will be no mother/daughter picnics or dances or music lessons. When I am older, I will never get to be a grandmother. And every now and then, someone will ask me why I don’t have children, and all I will be able to say is, “we tried, and we couldn’t”, and that person won’t know what to say.

If you have children, have decided not to have children, or haven’t started trying yet, I know what you are thinking. Please don’t say it out loud. There is nothing you can say to make me feel better. Here is your personal primer – if someone tells you about their struggle with infertility, whatever you do, do not try to say something that you think will make them feel better. You do not have that power.

Here is what I suggest you say: “That sucks. Would you like some wine/chocolate?” Listen, but do not give advice. I guarantee that you do not know more about their situation than they do.

For those of us on the other side, here are some tongue-in-cheek responses to typical insensitive comments that I’ve been working on (that I will probably never actually have the courage to use):

Comment: Have you considered adoption?
Response: Adoption? What’s that? (because of course we have! Adoption is not as simple as people seem to think – please see this post for more details)
or…
Of course.  How about you? (because why is this question only asked of people who can’t conceive?)

Comment: Want my kids?
Response: Yes.  (seriously)

Comment: You’ve just got to relax.  Stop trying.
Response: Good idea.  How should I do that exactly? (if I stop trying because it will increase my chances, then really I am still trying… I can go in circles for hours and get nowhere with this one)

Comment: My cousin tried for years, and then got pregnant after she adopted.
Response: That’s nice. Pass the wine? (really, what are we supposed to get out of these stories?)

Comment: If it’s meant to be, it will be.
Response: (I have no good suggestion for this one… the implied judgment is too brutal, so perhaps just walking away and never speaking to that person again is best)

Comment: Sometimes misfortune is a blessing in disguise.
Response: I don’t think so. Just out of curiosity, would you say that to me if I were grieving the loss of my husband? (and I guess some really insensitive people would)

Comment: Is it because you waited until you were older to start trying?
Response: Actually, it’s because the combination of my genes and my husband’s genes would be too fabulous for the mortal human realm to tolerate. Pass the wine? (and don’t take it personally. Remember that age is much less a factor than most people think)

Comment: Well, keep up the hope.  We tried for a year before we got pregnant.
Response: Congratulations.  Pass the wine? (there is no reasoning with this person. Leave them in their bliss.)

I know that people say all these things with good intentions, and I understand that it is difficult to know what to say to anyone going through intense grief. So, once again, repeat after me, “That sucks. Would you like some wine/chocolate?”

Spreading understanding of how much our society does not know what to do with people who can’t or choose not to have children seems like a great objective for CIAW, and I am happy to participate.

Many people, on the other hand, see this week as an opportunity to talk about the need for provincial health coverage of infertility treatments, and despite my own struggle with infertility, I have not yet signed a petition to have fertility treatments like IVF covered by Alberta healthcare.

I think my problem on taking a stand on this topic is that the rhetoric currently used to support the cause is faulty. For some reason, groups campaigning for coverage have chosen to focus on the financial side of funding fertility treatments, and as recent Globe and Mail articles pointed out (see “When the State Funds IVF, the Cost is Too High for Everyone”, May 11, 2014, and “Reality Check: Does it Make Sense for Taxpayers to Fund Invitro?”, May 20, 2014), the financial arguments just don’t quite make sense. Any savings made by funding IVF cycles would only offset costs created by the industry in the first place. Secondly, if IVF is funded, as it is in Quebec, the number of people requesting it will rise, so the numbers will not equate. If we are going to get really financial here, bringing more people into the world will mean lifelong healthcare costs. Pursuing a financial logic here just doesn’t make cents (I couldn’t help myself).

I am not, however, opposed to IVF being funded by provincial health care, and given the right rhetoric, I think I would become a vocal supporter.

It wasn’t until someone at an infertility support group I attended expressed her ire at the fact that her tax dollars pay for the costly medical bills of a lifelong smoker that I started to see another side to the financial argument.

We easily accept that fertility treatments are “elective”, but treatments for conditions brought on through personal lifestyle choices are not. Bob can choose not to wear a helmet while mountain-biking, and we will pay for all the surgeries to put his skull back together. We even pay to treat the people who attempt to end their own lives. We don’t question the cost of any life-saving treatments, but life-creating treatments are too expensive.

(side note: if you are reading this and thinking, “yeah, we shouldn’t pay for those things either”, you have completely missed the point)

Where is the compassionate side of this discussion? When is it OK for financial considerations to overrule the human side?

Some campaigners talk about their right to have children. I am not sure that this is or should be a right. And yet, does that matter? Lots of people get accidentally pregnant and are allowed to keep their children. People who don’t even want children are allowed to keep them. Racist people are allowed to keep their children and raise them to be racist. Those are rights.

In fact, in Canada, we women even have a right to abortion in case of unwanted pregnancy. We have the right to use medical intervention to prevent life but not to create it. Of course, abortion is way cheaper than fertility treatments, so that makes good financial sense, if not moral sense. Please do not get me wrong, I am pro-choice. For our sake and the sake of all the other wonderful people I know hoping to adopt, I wish that more women would choose adoption over abortion, but I would never take that choice away.

The social justice argument catches my attention as well. Whether we consider having a child as a right or a privilege, the current situation advantages people who can afford costly infertility treatments or adoption, and that is truly unfair. I was really fortunate in being able to try the treatments I tried, and I can afford to pursue adoption. There are many people out there who do not have these opportunities.

I also worry that keeping these options in the private sphere may lead to the commodification of children, and that is very concerning. In Canada, we are not allowed to pay surrogate mothers or egg/sperm donors for their contributions, but other countries do not have these rules, and desperate people will find ways to work around the law. How far will that go?

Of course, from a social justice perspective, there are many medical supports that are not funded that I believe should be, so it is hard for me to put IVF at the top of the list. Mental health is woefully underfunded, for example. While I was fortunate that I work for an organization with a great EAP that allowed me to get a counsellor to help me through this difficult time, many people do not have that “luxury”. Dental care and vision care are other “luxuries” that really seem more necessary than luxurious.

I can think of lots of reasons to fund IVF, but the financial side still confounds me. It is definitely a gamble (success stats very from clinic to clinic, and I find them somewhat suspicious to begin with, but most quote 15-30% depending on diagnosis), and any Catan players will know that repeated tries do not actually increase your chances. You can play a whole game without rolling a single damn 6. Yet, the prognosis of other treatments do not factor into public discussion over whether to fund them or not, so I am not sure that should be a factor here. Again, if we focus on the numbers, we lose the human side, and I am not comfortable with that.

The Infertility Awareness Association of Canada (IAAC) states that, “The Canadian Infertility Awareness Week is dedicated to raising awareness and breaking the silence about infertility. It is also about advocating for access to fertility treatments for all Canadians.” I agree wholeheartedly with the goal of raising awareness so more people suffering quietly behind closed doors will reach out for support and so more people will know how to give that support. Whether or not I come to any personal conclusions about whether or not IVF should be publicly funded, I do appreciate that the discussion is happening, and I hope to hear some new perspectives soon.

Earlier, I referred to the “life-changing” grief of infertility. I do not use that phrase lightly. Being unable to have children has caused my husband and I to question our own identities and our plans and dreams for our future. We are working on figuring out how to deal with that, and we take comfort in knowing that others have continued through this journey to find joy. Talking about our grief and giving it the attention it deserves has helped us a great deal, and so I am thankful to IAAC for providing support in opening this discussion.

And yes, thank you, I will have some wine. And chocolate.

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“Getting through to Escape” by Cindy

At the risk of being a bit of a downer, this has been a tough week. [understatement]

I pretty quickly decided that what I needed most was to get far away and soak up some sun (and maybe some rum), so I became quickly addicted to searching for last minute deals to get away as soon as possible.  John came on board, and we decided to do it.  Unfortunately, because our schedule was not really flexible, we weren’t able to get a great deal, but I’m happy with what we’ve picked and I can’t wait to get a tan and smell the ocean. Cuba, here we come.

My boss was amazing.  She immediately gave her condolences and told me to take all the time I need.  She also told me to call it bereavement, which it is.  I appreciated her understanding that so much.  I know how lucky I am.

John’s work is not so great.  They actually denied his request for leave because he is not entitled to any vacation during his first year with the company.  I am absolutely flabbergasted at the insensitivity, and I would really like him to not have to work there anymore.  It would be slightly better if the company wasn’t currently overstaffed, but they don’t actually have enough work for the people coming in, so it wouldn’t hurt them at all to let him take a week.  I just can’t believe it, and the stress this has put us through almost put me over the edge today.

I’ve been holding it together pretty well, but the only thing getting us both through this week was the idea that we would be far away next week and able to just be together without thinking (perhaps that’s not entirely possible given that it is us, but I really believe the sun and surf will be healing).  I found out that cancellation was possible, but the thought of not going was too much.  I feel guilty for pushing for this, but I know that we will be OK if John doesn’t have a job after.  This isn’t a long-term career job anyway, just a starter. I know that the thought of coming back to no job will add stress to John and impair his ability to truly relax, but I just can’t imagine staying in this house all next week.

There is a room upstairs that we call the office that was always intended to be a nursery.

In case you weren’t sure if the universe has a sense of humour, the first woman to come into the centre on Monday brought a baby in a carseat.  Then, a daycare group with about 10 toddlers dropped by and asked for some photocopies – that has never happened before.  The kids sang songs while I made their copies.  Then, on Tuesday, one of my regular clients came in and told me all excitedly about her new grandchild and showed me pictures.  She told me not to worry, I would be a grandma soon enough.  I realized that this is something that will happen for the rest of my life.  People will make innocent comments because they won’t know, and I don’t know that I will ever be OK with this.  It wasn’t my choice.

This article came into my inbox today (because I am a member of the infertility awareness association on facebook): Infertility Dilemma – Are You Giving Up Too Soon?  It describes the difficulty of the decision pretty succinctly, and the comment in response to the article describes how I feel right now.  The gambling aspect of doing treatments is so painful, and this IVF cycle was just a mountain on top of so many molehills.  I haven’t had one failed cycle – I’ve had over 36.  I can’t imagine looking at another negative test again.

So, I will do what has worked for me in the past and run away for a little while – only this time I get to do it with the person I love most.  I know I will be OK.  This is not the worst thing that could happen to us.  John and I will be OK.  We will have other dreams, and we will continue to be grateful for all the wonderful things in our lives.  One day at a time.

“Negative” by Cindy

So, after two weeks of waiting and hoping and dreaming, we got the results, and I’m not pregnant.  It’s a huge blow.

We have spent the weekend together trying to let out as much emotion as we can in hopes of being able to face the week.  We have also entertained the idea of running away – both temporarily and more long-term.  I dream of drinking mojitos on a white sand beach, and John dreams of taking a sabbatical and wandering the country in the trailer. We might do neither, or we might do both.  We know we shouldn’t make any major decisions right now while we are so close to the loss, but it feels like everything has changed, but everything is still somehow the same, so we need to do something radical to honour this change somehow.  It doesn’t have to make sense – nothing about this makes sense.

We have no plans to try another round.  I feel convinced that it would have worked if it was going to work, and I don’t think that I can put us through another rollercoaster round of IVF gambling.  I don’t trust the clinic, and I don’t trust my body.  I don’t know how people do this over and over again – they must have limitless stores of hope.  I’m glad we tried it because I needed some kind of closure to this process, and now, maybe I’ll be able to face the grief and let go.

We are very grateful for the support and love we have received during this journey.  We know many people have been sending us loads of positive energy and prayers, and we appreciate it.  Thank-you.

“Transfer tomorrow” by Cindy

It’s been a stressful morning.  I expected the clinic to call around 8 a.m. because that is when they called yesterday.  There is construction happening outside the house that is literally shaking the house, and the clinic finally called at 9:15 (I work from 12-8 on Tuesdays, so I’m at home).  The guy asked how I was doing, and I said, “Oh, you know, trying not to panic…”.

He was very nice and said there was no reason to panic, that we have three good looking embryos this morning.  One is a 4-cell and two are 2-cell.  He hopes that they will be 6-8 cells tomorrow for transfer, which is set for 10:30.  That’s 10:30 Mountain Time, if you want to set your watches to send us positive vibes… 🙂  He said that if one is 8-cell and two are 6-cell, then we might want to transfer all three because he has no way of knowing which 6-cell is the better.  He then said if all three are 8-cell, then it would be irresponsible to transfer all three because then we would end up with triplets.  That was the most positive thing I’ve heard all week – he made it sound like it really is going to work.

It’s really amazing that they can do all of these things, and that they watch these embryos grow outside of the body and determine the best time to put them back in.

I am totally freaking out.  I felt so relieved after the call that I cried a bit, and now I’ve got to pull myself together to get ready for work.  Life continues even as all this stuff is happening.

“Post Retrieval Update” by Cindy

So, retrieval was yesterday.  I survived.  Here is a pic of me in the recovery cubicle:

recoveryThe tears started when the IV went in before the procedure.  I wasn’t emotional because of my fear of the procedure – I was afraid of the results.  Also, that backless “robe” wasn’t very warm and I started shivering from the cold liquid dripping into my vein pretty quickly.

It was a difficult retrieval – my left ovary was not cooperative, so I was given extra drugs, but we got 6 eggs out of the deal (yay!).  We were told yesterday that we wouldn’t know the maturity of the eggs until this morning, so we had to wait to know more.  We had agreed to do ICSI (which involves them putting the sperm directly in the egg) to minimize loss given that we had so few eggs.

This morning, I got a call from the embryologist, and she explained that 4 of the eggs were mature enough to ICSI, and three made it through the night.  I tried not to feel too sad over the lost eggs – getting six yesterday made me feel pretty optimistic, but being down to three brought out the fear again.  She said that if all goes well, we will transfer two on Wednesday, but there is a possibility that they will decide to transfer 2 or 3 tomorrow.  We will find out tomorrow morning.  She said to keep our schedule “loose”.  I wonder how many people can actually do that.

I also had to start new drugs to prepare for transfer.  If all goes well, I will need to take these for ten weeks or so.  One of the drugs is oral.  The other, is not.  And that’s all I’m going to say about that.

So, we continue to be “cautiously optimistic”, whatever that means.  I was in a lot of pain last night, and John took care of me, but I was much better today and able to walk the dog this morning and walk into work.  I was pretty slow all day and asked John to pick me up so I wouldn’t have to tackle the upward hill coming home.  It was a good choice.

And that’s about all I have to say for today.

 

“Hope and Terror” by Cindy

It has been a bit of a bumpy week.  We are not exactly sailing through this IVF journey.

On Sunday, after three days on the new dose of stimulating drugs, I had an ultrasound to check out my follicles.  It wasn’t happy news. The doctor only counted 4 that were worth noticing, and generally, they look for more than 10.  She told us that many couples would cancel the cycle at that point to save money for the next cycle.  This was quite a blow as we had had no indication that I wouldn’t respond well to the protocol – all my pre-tests were good and indicated that I would be a good candidate.  John and I had a quick talk and decided that we wanted to continue with this cycle because there is no guarantee that another cycle would turn out any better, and we didn’t want these eggs to go to waste.  Because I was already on the maximum dose, we had to just hope that the follicles that were there would keep growing.

On Wednesday, we went in for another ultrasound, this time with our doctor (every time you go in, you can see a different doctor because they rotate who does the different procedures).  He was a bit more optimistic in a way – he said that the cycle looked “OK”, but that we probably wouldn’t have anything to freeze.  He told us again about the option to cancel, or to convert to IUI, but he also told us that we could wait until the next ultrasound to decide.  Somehow, at the Sunday ultrasound, I had gotten the idea that we needed to cancel then or go through the whole cycle, so I was freaking out a bit.  Although, no matter how much I try to rationalize it, I think we made the right decision.  If we canceled this cycle and then future cycles didn’t work (not that we are certain we will want to do another if this doesn’t work), we might wonder if this one would have.  We were told to return on Friday for another ultrasound, when we would know more.

Neither of us went to work on Wednesday – I was pretty emotional and it was hard to focus.  I got my spirits up a bit more on Thursday, and then we returned to the clinic on Friday.  Same doctor as Sunday, and she seemed convinced that we were going through with the cycle no matter what, so she kind of ignored the note in our chart that said we might cancel.  She said two follicles look ready, so we are on for retrieval tomorrow (Sunday).  I guess my eyes bugged out a bit because both she and the nurse noticed my surprise.  I was totally expecting us to have another discussion about canceling, but it didn’t even come up.  We are hoping to get 2 good eggs.  This is a good deal lower than the 10-15 they usually hope for, but quality is more important than quantity.  We had a nurse show me how to do the HCG injection (sometimes called the ‘trigger’), we had a meeting with the psychologist on staff, and then we went to work.

Tomorrow is the biggest procedure of the whole process. They will drug me up with some sort of hypnotic, which will apparently make me calm about everything that is happening, but I won’t feel drugged up.  That should be interesting.  Then, they will use some sort of enormous needle to suck the eggs out of my body – through the internal route.  John has to stick with me for the rest of the day because I will be legally intoxicated but not realize it. He’s got all sorts of plans to get me to sign ridiculous contracts and agree to things that he knows I wouldn’t normally agree to.  I hope there is no LARPing in my future.  I am also likely to be pretty uncomfortable after, but some women have said that it isn’t any worse than the HSG test (where they shoot dye into your uterus and through the tubes to check if they are clear), which I survived quite a while ago.  I’m glad there are drugs involved, though, that’s for sure.

While I am on the table, John will be making his deposit, and then they will check the eggs and let us know how they look.  We will get phone calls every day to let us know, and transfer will be scheduled when they think the time is right – probably Wednesday or Friday.

So, obviously we have hope, or this whole process would be even crazier than it is.  We also have a lot of fear.  If it doesn’t work, what will we do? It doesn’t help that the “Creating Families” magazine in the waiting room at the clinic had an article in it called “Taking Charge of Adoption” which showed exactly how impossible it is to take charge of the process and how heartbreaking and long it can be.  The couple in the article had been trying (and “taking charge”) for several years, including being on the government list with very wide parameters, and they still didn’t have success. So there the terror is.

What if it never happens for us? Most of our friends have kids now, and spending time with them can be difficult now – how would it be if we are never able to have kids?  How long would it take for us to be OK with that?  Because we don’t have kids, we are the ones that have to be flexible on our schedules in order to spend time with them. This is OK – we get it, but sometimes it means that we actually don’t go out much, and we don’t have the kids at home to make up for it. We have avoided kids birthday parties and other events because too many kids is just too overwhelming emotionally.  We don’t want to be the weird childless couple in the corner crying at the party – or trying too hard to be exuberant to hide the pain.  When I think that this state might be permanent, my itchy feet kick in and I want to sell everything and move to another country.

And, as much as I am afraid to admit it, there is fear on the other side, as well – if it does work, how well will we cope with the changes involved in being parents?  Are we really ready to do this? How much will change in our relationship?  Actually, that last question worries John more than me, I think, as he thinks I am imagining a rose-coloured future.

I disagree. The one thing I am not worried about in either scenario is our relationship.  I know that we will deal with whatever happens, and I am so grateful to have found such an amazing life partner.  I can’t imagine going through this with anyone else, and I can’t imagine being a parent with anyone else.  I know that he will be a great father.  I am willing to stab myself with needles and go through this roller-coaster process because the thought of him not having kids breaks my heart.  Anyone who has seen him sing a baby to sleep, or read a story to a tot, or be the jungle gym to rambunctious kids knows what I mean.

Also, as hard as this process has been, in some ways, it has maybe even brought us closer together.  We have been each other’s main support, and we have learned to communicate our needs to each other so that the other person doesn’t have to try and read our minds.  There are still some blips in the system, of course, but overall, we have been able to cry and laugh together through everything that has happened so far.  So, I don’t where we will live, or what we will do, or even which one of us will be the longest stay at home parent, but I do know that we will work it out by talking to each other and remembering how important we are to each other.

So that’s where we are at today.  Trying to balance our terror with our hope.

Thank goodness the sun is out.

“I am a Human Pincushion” by Cindy

Today was a bit tough.  I had a blood test this morning to check my estrogen (I think), so my right arm got a new hole. Then, I went to another lab to get a bunch of blood work done for my family doctor – iron, TSH, all the regular stuff. New hole in left arm – this one didn’t want to stop bleeding, probably due to the blood-thinning Aspirin that I’ve been instructed to take on a daily basis (I forget why at the moment – something to do with preparing the uterine lining, maybe?).  I should mention that I have twice nearly fainted at routine blood tests in my past, so two in one day is an accomplishment for me.

Later today, I found out that I haven’t responded well to the drugs so far, so my Gonal-F was increased from 300 to 450.  Have I told you how expensive these drugs are?  Each IU is $1, so with that drug alone, I am currently costing my insurance company $450 a day.  I am so grateful for that coverage.

I am trying really hard not to monster the news that I have responded poorly, but it really does not seem like a good sign. My understanding is that the Gonal-F stimulates the follicles, and if they aren’t working, then there will be few or no eggs.  All afternoon, I struggled to not worry about it.  I’m not the first woman to respond poorly, and many in a similar situation have had IVF success.  Still, I can’t help wondering all kinds of things, like: is it possible that the Suprefact has done such a good job of shutting my system down that my system has decided to stay down? If there is no improvement by Sunday, I think it is likely they will cancel the cycle, and then we’ll have to decide what to do. Yikes. I’m really glad we didn’t wait any longer to start IVF.

Anyhoo, back to the pincushion thing, they have this funny system with the drug pens where the company overfills them a little.  Because each drop is so valuable (a drop is $12), they expect us to use it.  This means that I had to give myself three injections today – 1 for the overfill of the previous pen, 1 to complete that dose, and the other drug.  Five new holes in Cindy today.  It is entirely possible that I could have to do 4 injections in one sitting in the near future.  Fortunately, I’m getting pretty good with the pen needle – I didn’t even really feel it today!  Slid into my belly like all the butter that helped create my belly.

Tuesday was a gong show.  I work late on Tuesdays, and this week, we actually had a volunteer event, starting at 5 – the time I need to do my injections.  I packed my injection carrying case on Monday after I did the injections, and thought I was prepared. Our washrooms at work are communal – with 7 stalls or so, so I wasn’t sure that was where I wanted to do the injections, but I couldn’t think of a better place, so I went there to set up.  I pulled out the stuff and quickly realized that I had forgotten a key component – the cap thing that is used to get the medicine out of the little vials.  I called John, who was home sick in bed, and he put on some clothes and drove the component down to me.  I returned to set up, only to realize that I had forgotten another key component – the needle!   John had had the foresight to bring all the supplies with him, so when I called, he turned the car around and came back.  Meanwhile, our volunteer event continued without me.  Finally, I sat at my boss’ desk and jabbed myself as quickly as possible, cleaned up and headed to the event, feeling like an unorganized nincompoop.

Nevertheless, I am proud of myself for gettin’ ‘er done, at home and at work.  Rar.