At the beginning of this month, I felt like I was being chased down. It has been rough, and I didn't want to talk about it. I'm better now.
First, we had just come out of a stimulation cycle, this time with PGD. I don't know if I'm the only weird person who feels inordinately happy when beginning a stim cycle. People talk about the injections and the moodiness, but I think you just feel such hope. You're in such a good mood, that things might happen, that you are actually doing something.
The rationale for doing a cycle with PGD, which had to be coordinated outside Singapore (Singapore doesn't allow PGD for the daft reason of gender selection), was several-fold — namely, the embryos we have frozen at Dr N's in Singapore may not work. They were the less good quality ones of the batch where the best quality ones had failed on a Day 3 transfer. Even if they do, they are definitely not enough for more than one child.
This cycle would enable us to bank more eggs and embryos, and the clinic allowed for own and donor cycles, and had a program where we would be charged per one use of the ICSI and IVF labs if we chose to.
However, as the cycle progressed, a few issues reared their head. First, the coordination between two clinics greatly increased the logistical difficulties and conflict between doctors, clinics and travel. I won't even bother to talk about how painful that has been. Second, mid-way through our cycle, a donor cycle was no longer possible, as the legislation and rules had abruptly changed. There were times when I asked myself if I was crazy to put myself at risk as a patient of a doctor and system that I was not familiar enough to be comfortable with.
The third and dominant reason why the process very quickly turned into a nightmare was really down the rabbit hole of fertilization. After the initial excitement, hope and anticipation of the stims and follicles, which were actually growing and growing in close size formation (hooray!) for once, the real nightmare was just waiting around the corner.
Out of 18 normally fertilized eggs, none were blastocysts on Day 5. When I received that report, I just had a meltdown (let's call it Meltdown 1, I was really good and managing tremendously to be positive, all the way up to that point).
In the moments during and right after the IVF stims, we let our guard down and were happy. We looked up and received free feeds from Pre-loved Baby Goods. We were planning that we would transfer in the next month.
Part of me crashed out because every time I let excitement creep in, it comes right back to bite us in the butt. Every time we think it might be our ticket off Infertility Island, we wind up watching all the life boats chug away, because it's Not Our Turn.
The thought that we would start all over again obviously broke both our hearts. We put months of our time and hope into getting ready and making decisions for the cycle. For me, to feel that my stomach was still sore, while our embryos are gone, it was a primal frustration, anger, fear and loss.
Because I had chosen not to get a Day 3 update (stupid, stupid), as I was determined to do a day 5 blast transfer post PGD, or nothing at all (since this clinic had a guarantee), I did not get pictures of the embryos on Day 3 and have no idea which were 8 celled.
Guess where I was when I received that call, too. At my granduncle's funeral. I wasn't close to him (he was 92, a good inning), but I had to step out of the hall and leant over the balcony, gasping the rank smell of stale white lilies out of my breath and trying to steady my thoughts. Getting these kinds of calls at a columbium? Seriously macabre stuff.
Then on Day 6, we received the report that 6 of them had formed blastocysts and by the end of Day 6, were hatching blastocysts. How the hell is that possible?
Is it a sperm issue that makes them slow-growing? (What a horrible thought, that we may have been doing all these rounds with the wrong diagnosis). But we've done sperm tests up the wazoo and all of them were normal. Are Day 6 embryos vastly inferior? (Science is 50/50 on this, which is seriously cold comfort). Cue Big Meltdown 2.
Then, the waiting process began for the PGD results. Every day, I had a different Freudian dream and I tossed and turned. I wondered if the clinic would actually hold their guarantee (which is for 2 good quality blastocysts and/or 2 normal PGD blastocysts). It was seriously horrible.
I also want to take a minute here to say something that I wish I had paid more attention to — if your clinic has a guarantee, please read it very, very carefully. Understand whether it is a delivery or pregnancy guarantee, or if it is just an embryo quality guarantee (which actually doesn't mean very much, because the majority of the worry is whether they would take).
Ask all the questions to the doctor upfront and do not expect to get personal time with the doctor afterward to clarify your concerns. Ask detailed questions about embryo grading and whether it covers Day 5 or Day 6 blastocysts. Get everything in writing and black and white as much as possible. As it happened in our case, we had to ask all the questions to the nurse, who would then transmit the questions and answers from the doctor.
Although the guarantee was some comfort at the initial stage when there weren't Day 5 blastocysts, it was immediately nullified with the Day 6 blastocysts, and the clinic chose (of course) to honour the lower of their and/or commitments.
Even though we paid for 5 embryos to be tested with PGD, only 4 were submitted for testing, with the others considered to be too low potential or quality, or not yet hatching. This is something I still don't fully understand and which was never explained clearly to us — why were the additional blastocysts not sent for testing? They were also not recommended for freeze, so I presume that they were viewed to be blastocysts but not of sufficient quality.
If there are areas that I felt frustrated about, it was definitely that there was not enough face time with the doctor to establish a level of trust about their process and communication. Important lesson learnt.
I also learnt something about PGD. Although young women also have chromosomal abnormalities in their eggs, up to 25%, by the time the eggs reach blastocyst, those that are tested are likely to have fairly low rates of abnormality. I never believed this was true, preferring to believe that our high attrition and high fragmentation meant that I had a higher chromosomal abnormality rate than most.
This may still be true because we only test blastocysts at PGD — and for this reason, my own doctors had always said there was not much point in doing PGD on blastocysts until you were over 40. They had also told me that there is a qualitative factor, which is not chromosomally determined and which has to do with the grade of embryos.
I didn't believe that, but I do somewhat now — out of the 4 embryos, 3 came back normal. (The irony of PGD, I guess, is that you pay to hope that you didn't have to pay for the testing). The top grades of 2BA–4BB were exactly similar to what we achieved in my previous round of stims, which resulted in a frozen blastocyst waiting for us in Singapore. Overall, both the additional round of stims and PGD could be considered, if unsuccessful, rather a waste of time and money.
In addition, we now have 1 untested blastocyst and 2 untested, low grade Day 3 embryos sitting in Singapore and 3 tested blastocysts sitting outside Singapore. You would think I'd be a little smarter about this process by now, but I don't seem to be.
So, there we were, working our way toward a frozen (FET) transfer. All I felt was an overwhelming sense of fear. The two week wait and the wait for an FET encapsulates everything that I hate. I do not like feeling anticipatory, it makes my stomach churn. I do not like feeling in limbo and I hate being unable to commit over months, to plans, appointments and travel. It makes my blood pressure rise in a way that is unprecedented in its volatility and speed.
I don't like feeling even more like we've come so far and being so scared of being let down. I hate the feeling of knowing that what you know doesn't change anything. Waiting around for transfer, or for implantation, makes me far more insecure than an actual IVF or stimulation period.
I really dislike this feeling of being drip-fed information and waiting on intangibles like blood hormones or lining thickness, and that feeling that you are far from anywhere. I fear grieving. The more you know about your embryos, the more you have for them, the more you grieve for what you lost. Whereas at every beginning, you can't lose what you don't know.
Our natural FET cycle was falling apart. I had been feeling pains in my chest through the month. At the early scans, it seemed that I had possibly ovulated. When my doctor said he could see two corpus luteums which might indicate I had recently ovulated, I wanted to cry. Then he said he could see a 9mm follicle. So which was it? The lining was dense, 9.6mm.
They took the bloods, which showed I was nowhere near ovulation and my hormone levels were in fact surprisingly low. Five days went by, four blood tests, three scans. I was now past the date to ovulate, yet there was just a 10.5mm follicle. The lining was great, now trilaminar 7.6mm, but the blood hormone levels seemed to be declining.
Toggling between the different clinic instructions here and overseas was an added stress. So was the doctor freaking me out with his maybe-this-maybe-that scans. My emotions were going up and down, and then up, with every scan and new datapoint. I couldn't help it, and it was exhausting. The nature of natural transfers is that they require constant monitoring of cycle progress — that's why a medicated cycle, while more invasive, is much easier to execute.
While waiting out the month for an FET is when my friend, who cycled in her first IVF at the same time as I did, started complaining of bloating after a fresh transfer of Day 3 embryos. A Day 3 fresh transfer! I Ask You. Do those actually work? Her beta HCG was ridiculously high. It's twins. She texts me this, in the same breath asking, "how are you, dear?"
I'm the last in our group of girlfriends to have a child, so I'm just being realistic that this will irrevocably change the dynamics of our friendships and that I will have to watch these twins grow up and be reminded of this time. Honestly, after recurrent IVF failure, you just learn not to dream, and to see a dream be played out in front of me, within a month — it's just too much.
No matter what little I have to be excited about, I will have to keep coming back to this social reality and the twins that I didn't have. To put things in perspective, based on our current timeline for a repeated medicated transfer, she will be 5 months pregnant before we know, early next year (2015!), if we need a hugely expensive donor cycle. You would think a good friend who I understand to be a little more sensitive.
Then there is another girl whom we both know, who is a tired new mother. In the same week, she messages to ask me if I could make a fondant house, because her older child wants a minion house cake for her birthday. Not a minion cake, which she had bought the plastic figurines and ice cream cake for, but a minion house cake, which she can't find in-store. (It is actually a complicated minion castle and would take several hours to produce).
"Just to be clear, you want me to make a fondant minion house, which you aren't offering to pay for, for a cake that I haven't made, for a children's party that I'm not invited to," I wanted to say. I mean, just to be clear exactly what extent of gall I should feel. Not that I remotely want to go to said party.
But actually, she beat me to it. "Oh child, look at what you make me make other people do for you!" she messages. "When you have a child," she offers, "don't ever let them choose, just stick candles in a doughnut and be done with it."
Wow. I mean, what's the point of any imaginary retort? Again, to put this in perspective, I heard she moved recently. I have no idea where she used to live, nor where she lives now.
On the same day, another friend from work finished her FET with also, a positive result. She's had two positive betas, within nine months of each other. Although she had herself taken a break while leading up to her own FET, now that she was cheerful and enthusiastic and "trying not to think about it till they saw the heartbeat", we were all receiving multiple emails a day on work instructions and suggestions.
She also asked me to walk to the food market near to my office, in my free time, to help buy her yam cake, because she felt like eating it. Presumably because she mistook that at that point, I cared anything at all about any of this. I mean, I'm only busy working, driving to the clinic every day, trying to look for an egg donor and wondering how much of my own face I'll miss seeing in my child, but sure, why couldn't I do that and also find time for pregnancy craving foods? Or make minion houses in fondant?
This third meltdown took a long time to actually play out. I wanted to be happy for them. I am, actually, happy for them. After this long, I am entirely rational that everyone has a different journey. But I was entirely unprepared for how lonely, alone, uncertain, sad, desperate and angry it would make me feel. To see normalcy and progress everywhere around me. To see it look so easy, to have it be so easy.
It's funny what this detour, this long walk with infertility, has done to me. I think these feelings aren't something most normal people would encounter. I can imagine that the number of people who would be in our shoes, or even have to make the type of decisions we make, must be very slim indeed.
During that week, I had one dominant feeling, which is that — people need to stop asking how I am.
I realize how fragile infertility has made me. People keep asking how I am and I want them to stop. Just stop. How am I? I'm not pregnant. You might be. How do you expect me, thus, to be? I am fine, until you ask me how I am, because it adds insult to injury and it just reminds me that it is not fair and fun to be in my position.
And what are you going to say anyway, that you are sorry? That you think it would be good for me to go on holiday (for crying out loud, do you even know how many holidays I've taken since beginning this — it's somewhere in the region of double digits by now). It doesn't help. And no, you do not know how I feel. You will not know how I feel till everything that has worked for you up to now fails, and then you wait another few more years, repeating the same processes of everything you've already done.
The patronizing was just suffocating me.
The doctor explained that my declining blood levels were not a good sign. It meant that the endometrium lining and follicle growth would soon flop over as well, and even if it didn't, the fact that all the variants were out of sync meant that it was a "bad" cycle, one that would be unlikely to support an embryo or pregnancy.
After a week of sore and bruised arms, days spent in the waiting room, or driving between the clinic and work, close to a thousand dollars in monitoring, scans, consultations and valet tickets for parking in the crowded building, biweekly rounds of acupuncture, the cycle was cancelled.
The next cycle would clash when we were scheduled to be away in the US. We would have to wait at least more than a month, possibly up to three months, to try again. I had even been prepared for the transfer to fail and to move on to donor options, but now, all that is out the window, because with the run-on delay, no clinic is going to sign us on or make committed preparations, because we still don't know what's going to happen. Neither do we want to make more wrong decisions, or start paying, when we don't even know what treatment we would need.
On the last day of driving like a madwoman around the city, my car blew a flat, I couldn't reach the husband on the phone and had to be towed.
It's not like I've never had a cycle cancelled before (haha, haha). It was that I was spent. I was in the mood to drive a stake through anyone already pregnant. I was taking it hard, because I was tired and fed up. This was Meltdown #4.
So, it's been a sorry September. I'm sorry about the long silence and the ranty posts. I'm trying to take a break, well, rather, to get round to the idea that we will be taking a break, that like it or not, I will be chilling out, watching pregnancies go by.
I can drink a great big, cold coffee. I can dye my hair, which is sprouting icky grey roots from the month that has passed from our cycle. I can exercise, because it doesn't matter. In fact, it has taken a lot of furious spin classes and Ariana Grande (don't laugh, isn't she so sassy, even if I'm rapidly old enough to be her mother) to even get through this month.
I will be rescheduling all my cancelled appointments from when I couldn't make plans, because now I can for oh, a few weeks. Until I can't, again. I'm adjusting back to being free and empty, to not being on the two week wait. To being in limbo, just a bit longer, before we progress, or not.
I'm holding on.
