Personal

June 2015.

I cried. I’m devastated – I was so ready to kick off another round. I felt silly being upset though but it meant that I pottered about the apartment and cried.  I was meant to do a girls brunch, but cancelled. The girls ended up coming over after and we cried some more.

I feel guilty. Like I haven’t followed the strictly diet enough, I dropped the ball on touching receipts and got all stressed out over work and now I can’t do IVF. I feel like I’m all over the place, it’s a bit of disaster.  If my FSH levels don’t come down next month, this could be it.  It could be over before it’s even started. That’s my fear.

The flip side is that I know I can do more. So – this next month I’ll be on the super strict diet. I won’t touch any receipts. I’ll take all the supplements, rather than just the little ones. 

Edit – I realised yesterday that all the pans I’ve been cooking with are covered in a non-stick, likely BPA coating. I’m freaking out – anything even remotely bad for me is being binned. To make up for it, I’ve bought super nice, really expensive stainless steel pans. 

Please go down FSH, you’re making me paranoid and crazy.

June 2015

I’m back at the clinic again. It’s both familiar and reassuring. I’m glad it’s finally kicking off and grateful that I know what to expect. There are a few new nurses this time – a few familiar faces too. I think I shocked a few ladies waiting in reception when I had a rather gossipy, in depth conversation about the receptionists holiday. She’s always been nice to me and catching up after several months seemed like a polite thing to do. I was breaking the unspoken waiting in reception rules though – same as riding the tube: no eye contact, no talking. 

Still, I feel like an old hat at this. It’s reassuring to know what comes next, to know what to expect. I do feel a but prickly about it – IVF is hard and never fun. I’m hopeful though, hopeful for more eggs, and good quality. Possible future babies. I’m so hopeful.

We’re doing bloods, and then we’ll get started with the round! 

March 2015.

I got an email from my embryologist:

Treatment: IVF – Blastocyst culture with PGS for embryo banking.
Number of eggs collected: 3
Number of eggs inseminated: 3
Number of eggs fertilised: 3
Embryos cryopreserved: 2 X Day 5 (3BB & 3BB)

Awaiting PGS result.

Thanks! Have a great day.

Uhm. Okay. So that was a fun way to discover one our blastocysts arrested. We are left with two. Two little blastocysts of okay quality (not great quality, just okay) who have both been sampled and frozen. It feels like a very abrupt way to end what has so far been an insane round of IVF.

I knew this already though – intellectually. I’m heartbroken that we only got two (though my IVF positivity kicks in with ‘we only need one!’ It’s a bit chirpy and is living on hope). We’ll do another round, once my body has had time to recover. I’ll start taking DHEA to improve the number of eggs we get next time and hopefully, hopefully we’ll only need to do this once more. We’ll have many more eggs, and hopefully better quality eggs. And hopefully, hopefully some of them will be chromosonally normal.

And then, I can stop. I can stop the drugs, and the diets and all of the crazy in the details. I will have done as much as I can, I would have done the best I can. No compromise. And that’s as best as I can hope for Plan B, right?

I read that it’s easier to focus on the difficult things, the things that worry you. It’s much more difficult to focus on the positive, but if you practice, you’ll get better at it. So, here’s my small list, focusing on the positive:

Grace in small things:

1. We’re done with all the invasive horrible things. No almost daily scans up my vajayjay. No more bloods, or injections. No more teams of people looking at all my intimate details. My body has become my own again.
2. I feel a bit more like me. I have more energy, the bruises are fading and the bloating and tenderness is going. I didn’t realise I’d lost me, but I had. I’m glad to be recovering.
3. We know now. What it’s like, how a cycle goes and what egg collection is like. The results speak pretty clearly, my diagnosis of low ovarian reserve was not wrong. Power in knowledge, and we have had a good round to learn from.
4. I can do more. We’re not finished yet, this isn’t the end of the story. I’m grateful that I’m in a position where I still have the funds, and the support and the time to figure out what else I can do. I still have options. I still have hope, and it isn’t bound up in just the two little frozen blastocysts we have.
5. I have Zee. I worried for a long time that because I wasn’t fun… I couldn’t drink, or eat normal foods, and didn’t have the energy to go out that perhaps Zee and I would go downhill. We didn’t, I’d say it pulled us together more than it pulled us apart. I love him.

March 2015

The clinic sends me pictures of our embryos. Day one, they fertilised awesome. Day two all cleaved into 4 cells. Day three all cleaved into 7/8 cells. They’ve all graded well, and oh man. All of the feelings!

Pride, fear, hope. So much hope.

It feels like from this point nothing could go wrong. I’m feeling better, I have all my energy back and of course our little tiny baby embryos are going to grow into perfectly well formed blastocysts, and they’ll all be chromosomally normal. Right?

I’m scared to hope.

Either way, we won’t find out till the next round, we’ll sample however many make it to blastocyst stage and freeze both the embryo and the sample. Well do the PGS test in the next round.

Because we’ve decided to do another round.

It feels like such a massive thing. We’re doing another round, and I’ve got three months. Three months of supplements (oh hey Co10 and DHEA, the latter you can’t even get in the UK cause it’s not licensed – watch me work that magic trick). Three months of insulin spiking avoidance diet (read: no carbs, no sugar, no dairy). Three months of stress free everything, a few thousand pounds and hopefully we’ll get more embryos.

And now I’m waiting. For my embryos to grow, for the next round to start. All of the things. We’ll see. I’m trying to be patient.

All three little eggs fertilised. What a relief! Typically only 60% make it past this gate, so I’m glad we’re over this hurdle with all our little eggs intact.

I know Zee is relieved that his guys did what they were meant to. This was his bit, and they did well. It’s pretty weird to think that Zee and I have three little embryos together. That we’re kind of parents. This is meant to give us more time before my ovarian reserve is gone, but I can’t help but be a little bit excited.  It’s kind of mind blowing. We have three little embryos that we made together.

Next gate: Growing to blastocysts. It takes five days. Tomorrow they’ll split into two and then more until by day five they’re either blastocysts or not viable.

I’ve got my fingers crossed. I feel like there’s a tiny little ray of hope, a tiny little something to hold on to. We’ll see. Five days from now, counting down.

What a mindfuck that was.  Here’s what I’m leaning – you’re going to be blindsided at every point.

We went down to the clinic and I was the first patient of the day. We had the embryologist come in and talk to us to make sure that we wanted to wait till Day 5 to freeze, because it meant we may not get any viable embryos. Because I have so few follicles, typically you freeze earlier, because the longer they aren’t in a uterus the higher the chance they’ll be damaged. But… You don’t know if they’re viable until you test. You shouldn’t test until they’re blastocysts because else you’re taking cells that will damage the embryo. 

If the embryos are not viable, they won’t result in a healthy pregnancy anyway, they’ll miscarry or not attach. There’s no point freezing possible non-viable eggs and hoping, better to grow them, and test them and then freeze the viable ones.

So, that was The Plan – wait till Day 5 to see which would grow and then test the blastocysts. I panicked because I felt she was questioning The Plan. In times of stress, things like knowing The Plan give me something to hold on to.  It was not exactly what I wanted right before I went into egg collection. Having her question The Plan had me running all the reasons in my head right up till I was in theatre. 

Another blind side moment – finding out they stuck suppositories up your behind at the last minute (gross). And having the anaesthetist treat me like I was ‘Thursday Morning’ and not a real person.

Also, turns out I don’t do so well under general anyway. I was quite groggy and asked the same questions repeatedly, without really being conscious. I wanted to know immediately how many eggs they retrieved. I remember coming to and demanding to know (little did I know that I’d already asked at least seventy times before that moment).

Three eggs.

I got three eggs. I want to cry. I know the odds, I know that it’s a downward pyramid to success, where you lose some at every stage. And our downward pyramid starts with three. It seems almost impossible that we’re going to get through all the gates to a viable embryo…

Next gate: fertilisation. And then growing to blastocyst stage, and then testing for chromosomal normal embryos.

Three gates, where 70% of our embryos are expected to drop off. My body is sore, and I’m cramping and starving and annoyed at everyone for fussing.

And I’m gutted. I’m so sad. Three feels like such a pitiful number… especially when I know other ladies get 20+ eggs, three just feels so impossible, like the odds are destined to fail.

I’m scared that for all the time we’ve spent, all the injections and scans and tears, and all the money (sad face) that we’ll end up with no embryos at the end. I’m scared that even with pumping my body full of hormones for two weeks, we only got three. That if I wasn’t full of stimulants, I’d have none. I’m scared I’ll never get pregnant and have a baby. It’s a terrifying thought.

Phew. All of the fears. 

I was told to try balance the fear with the positive, so here is the other side: I’m grateful that I know now what my body is doing, and not five years down the track when it’s too late to do anything about it. I’m grateful that I have Zee who hasn’t shied away from any of this, who has been so wonderful and gracious, even when I’ve broken down. I’m grateful that I at this point I have no regrets – I’ll never wonder about what would have happened if we hadn’t don’t IVF. 

Even if the worst happens, we’ll handle whatever comes the best we can. 

February 2015.

I went quiet in this round. I didn’t want to talk to anyone, write anything down. After the last round where I ovulated all my eggs away, I feel like I’m being buffeted against waves of fear – constantly holding my breath waiting for something to go wrong.

It went better, this round. Its true when they say they learn from previous rounds. When we got to cycle day 12 we did double orgulatran injections to keep me from ovulating. I also went to daily scans and bloods, just to make sure all was in order and I hadn’t ovulated. The extra monitoring made me feel a bit more secure – it’s reassuring to know exactly what your body is doing. To see your insides and your blood tests correlating. 

I have a handful of follicles over 10mm. We want them to be 20mm or more for collection, and I have six.

Six follicles. Knowing that my ovarian reserve is low, six feels both like a triumph and an epic let down. I feel like my body isn’t doing what it’s meant to and it’s got to be out to foil me somehow.

Still, with the bloods and the scans we have tentatively set a date for two days time. Which means a whole host of injections tonight, the last of the menopur (the stims) first, the last of the orgulatran (the downregs) an hour later, and the trigger shot (mature the eggs) bang on 36 hours before I go in.

I’m nervous. Excited for this round to be over, but nervous. Bonus though, no shots for tomorrow. I’m very excited about that! The end is in sight and oh, I’m so hopeful! 

Fingers crossed all goes well!

February 2015.

We’re a few days into round two… I’m not excited. The beginning of this round was stressful – AF came early while we were in France. I was distraught and furious at my body. Why can’t it just do the things it’s meant to when it’s meant to? I feel so betrayed by my own body. On CD3 we flew back into Heathrow and caught cab straight to the clinic for bloods, scans and meds. They kept the clinic open for us, which I’m so grateful for. Small kindnesses make my heart explode.

Still, I’m not excited about this round. I hate the diet, and the injections and the weird tasting supplements. I resent this round, my body and that I have to do this to have a family.  I’m the opposite of positive and yet forever hopeful. Hopeful that I’ll get some viable eggs. That they will grow to healthy little embryos that are chromosomal normal. That will freeze well. That a little biological family is not impossible.

It’s a massive up hill struggle. I’m sad to be doing it.

I’m beginning to realise only now what we’ve agreed to. That last round we just dove right in, did some preliminary research, enough to confirm what we felt and off we went.

Now? Since the last round failed? I’ve dug deeper. Started reading books and proper research studies and discovered all the horror stories. Things like the effect BPA has on your cells and how it’s everywhere. In paper receipts and plastic take out boxes and cling film – stuff you touch EVERY DAY.

I’ve been reading about cell make up, and how every little cell has a miniature power factory in it (called mitochondria) and if there isn’t enough power from the factory at the right time, then good bye normal eggs, hello miscarriage, hello failed IVF rounds, hello all the bad things.

Even worse was reading what causes a power outage is BPA (even trace amounts) and insulin spikes (thinking of the high carbohydrate/high sugar diet I enjoyed before this makes me ill).

I’ve read enough to be scared, but not quite enough to know what exactly I should be doing. About what helps and what hinders.

So I ask questions. At my last appointment I asked about chromosome screening (called PGS). I think by doing so I’ve just raised the odds (and the costs! PGA is £3k for 8 blastocysts) of getting a baby at the end of this. A healthy, live baby. There are many points in this journey were it could all go wrong, where an embryo could no longer be viable. Considering I didn’t even make it to egg extraction… I’m hopeful, but a bit pessimistic.

This feels like an uphill battle. This feels like a massive undertaking. This feels like a much bigger thing than it did at the beginning of my first round, where all my thoughts were: “no worries! You give me meds, I take them and then you take out the eggs and freeze! Done!” Oh Sae of two months ago.

Now I know I’m going to need more than one cycle. That I’m going to be visiting the clinic with all the scans and bloods every three days for I don’t know how long. That I’m going to be on this don’t-fuck-up-your-eggs diet for the next three months at least. No carbs. No sugar. No dairy. No all of the things that taste amazing. Sad face.

That Zee will be injecting my belly every night again and as I get all teary (because it HURTS) we go through the routine of hugs and silly plasters and down time.

The meds make me tired. The routine makes me tired. This whole thing is hard. I feel like I’m only just beginning to discover how hard. 

This is our Plan B.  It’s a lot of effort for Plan B. But it’s worth it right? Eye on the prize.

February 2015.

It’s been a week. And this week has been slow, and mellow. I’m lethargic, no energy or motivation to do… Anything. I’ve been sleeping more, and spending more time holding Zee, and just…

This is grief. There is this epic sense of loss and I recognise you, grief.

I’m okay to be sad. To take the time to sit and look at ultrasounds, to cry when I open the fridge because all my medication is still in the bottom draw, waiting for the next round.

I also found out that although we didn’t get to egg collection, based on the number of follicles I had I’d be considered a poor responder. I think this is the most heartbreaking, because it proves the tests and diagnosis. There is no way to shy away from this – my ovarian reserve is diminished.

I’m sad. 

I’m okay to be sad, though. The world can wait, there is nothing wrong with taking a moment to be sad. It’s been a handful of days… Two since I was meant to do egg extraction, five since the ultrasound… it just seems like everyone is trying to hurry me along, distract me. Lala! Don’t worry about your feelings! Look at this thing, read this thing, eat this thing!

I want to slow down, not speed up. I don’t want to busy away my feelings or be distracted.

I opened a new instagram account (@sae.hopes) and joined a community of ladies in the same boat as me. They use all the acronyms (TTC, waiting for AF, CD2, starting FET, IUI, IVF, BFN… Sad face) and I’m learning them. It’s comforting, having a whole world of these people who are in the same space I am. Watching their heartbreak and longing and happiness all through the Instagram interface. I haven’t opened my old ig account since. It’s not the same.

February 2015.

I’m struggling. I’m shocked and grieving (is that the right word?) and heart-wrenchingly disappointed.

I feel betrayed by my own body. Again. As if it wasn’t enough that my body is all end of the line fertility wise, now it’s ignoring the very strong drugs we went through great pains to inject every night. It released the eggs I’d spent two weeks growing, two weeks of painful injections and hope and tender bellies…

My doctor was all ‘oh dear’ and ‘I’m sorry’ and ‘I’ve never seen this in my entire professional career.’ None of that makes me feel better. I’m the one off, the 0.05% (her number, not mine). I’m that person that ovulates six days early on Orgalutran.

I knew it, too. Right when she did. I’ve done enough ultrasounds now to know how it goes. When she swung around to look at my left ovary and none of the black blobs popped up I knew it was wrong. Two days before there had been many of them, big black blobs crowded around each other, vying for attention. What I saw instead were little sad triangles. Collapsed follicles. Tiny corpus luteums.

I cried. I cried and cried and cried.

Despair. Disappointment. Waste of time, money, energy and pain. Waste of hope, and futures and everything. A waste of everything.

I wasn’t prepared to fail here. Zee was of the opinion that we shouldn’t talk to people… I did, because that’s how I deal… I build little people supports by sharing, like it’s no big thing to share. I wasn’t scared of sharing because I thought nothing would go wrong. We weren’t implanting the eggs, just freezing them.

No one would be asking or waiting for news because it was all going to go to plan. I wasn’t going to get pregnant so no one would be waiting to hear if it worked or not. I wasn’t prepared to fail here.

There were lots of other places to fail, I knew. Like that come egg extraction, a few of my follicles might not have eggs, so we’d get a few less. That perhaps some of the eggs might not fertilise. That of the ones that did, only 40% would reach blastocyst stage. And of those, perhaps only some would be healthy and viable.

But we didn’t even make it to egg extraction. We failed before the finish line was even in sight. I wasn’t prepared to fail here.

Needless to say… I stopped talking to my people. I don’t want to talk about how this round failed. Hear their sorrys and oh dears.

We’re going to try again, because fuck you body. I want my fairytale family, society has sold me a dream, society told me that this is my future and I want it. We still have the means and so we will try again. We will try again with what small ovarian reserve I have left, and we will take all the drugs and we will try again and again as long as we can afford to. We will try until there is nothing left to try. That is how I feel about this right now.

Still, I have to wait for my body to catch up, so I have some time to adjust. To grieve and to feel.

I was on a healthy eating diet, the four hour body one (no carbs, no sugar, no dairy) that was doing wonders for my body, energy levels, and sleep patterns and everything. My skin was awesome too. It was easy to do, too. Especially when I was going it for my little embryos…

I was kind of ashamed at being on the diet though, friends of mine were already making asides about skinny-ness and eating habits, in a way that only friends can do, pointed with a nice glossy coat of well meaning concern. It was easy to push that aside, though. If I didn’t want to talk about IVF I talked about energy levels through out the day and it helping me sleep. My body was in awesome, healthy shape, my doctor was happy, I was happy having something small to take care of, that I could actively do.

Now I think fuck the diet. I’ve eaten a handful of snickers bars. And peanut butter cups. And FRUIT. I’ve missed fruit. And fries. I’m going out to find fries later today, I will eat them all and it will be glorious.

I’ve got a few weeks to be kind to myself. To give myself chocolate and space and time before we start round two and I’m going to take it. We’re going to France for what I thought was going to be a celebratory eggs-in-the-freezer holiday. Still, I’ll take it as a take-your-mind-off-it one instead. We’ll see.

I have some time to be kind to myself, and right now there is nothing else I need to do.