The egg harvest got off to a rocky start. A very rocky, near self destructing start.
My first appointment was on Friday when I met with my consultant, my clinical nurse specialist (CNS) and another fertility expert. All of them were lovely and although it was quite a difficult day for me, they were perfect in every possible way. The difficulty arose from the situation itself; as I sat discussing my fertility and “normal conception” with my consultant and my mum, it felt wrong. Of course all of this sarcoma crud feels wrong in most ways, there are the familiar moments where I faze out into a far off silence and question how on earth I got there, but these appointments feel more intimate, more personal.
As much as I want my mum to be with me and there is no one else on this earth that I would rather be sat next to in these appointments, it is not how I dreamed this would be. Apart from the obvious, that one doesn’t imagine themselves making babies via the courting of hormone injections culminating in an ever so romantic operation, my mum isn’t who I imagined would be with me as I discuss this part. And although I know she loves me and I am loved by many, that isn’t the love that you imagine these things to be built from, and there is a subtle tinge of loneliness that pervades these discussions. Although I have always been an independent person who wants to do things themselves, whilst going through this process it becomes difficult to be happy with the absence of that special someone. Generally, as I said, it is only a subtle tinge, but on occasions this tinge turns into a heavier weight.
I am okay with being on my own in the meetings but it feels harsher during the scans. I have seen the films and I have read the books, and there is no one holding my hand in the way that they hold hands and blink back tears on television. I lie there as they ultrasound my belly and sometimes I can’t help but picture that moment in Friends where Rachel, hands tightly clasped with Ross’, spots their baby for the first time on the ultrasound. My reality is slightly different. I know this is a different situation because I am not trying to find out I am pregnant, I am just trying to find out that I can have fertility treatment so that I can hopefully one day be pregnant. So I am fully aware that it is not going to be all gooey eyes, pink cots and blue cradles, but still just the slightest essence of baby would help soften the medical side of this part of the treatment. I find myself fading in and out during the scans; lying back it is easy to let my mind wander.
Although I am finding it hard mentally, much harder than I thought I would, this all felt a little too good to be true. Having funding approved for the harvest was a miracle, a wonderful miracle courtesy of my amazing fertility consultant at UCLH. None of us expected it and honestly it was one of those moments where I had to pinch myself; nothing had gone that well in so long. I will go into the details of why it was such a surprise in another post, but be rest assured that it was just so ridiculously lucky, our success lying in our failure to act on something we had been meaning to do for years. Had we have finally got our asses in gear just once during the twenty one years I have been alive, I would not be writing this post at all.
So when I say funding approval seemed too good to be true, I mean that I felt indescribably happy but still a little nervous. Throughout this journey, good news has been delivered again and again to repeatedly be rescinded and replaced with a cancer diagnosis, a returned tumour, a later surgery date, infertility, two more operations, chemotherapy. Good news goes fast, and experience has taught me to heed congratulations with reticence and apprehension. Recently things have gone suspiciously swimmingly – yes, you may be thinking I am a pessimist but I never used to be like this. Too many times have I listened and been burnt; now I choose to be guarded and not let myself get swept along in the excitement of positivity without treading carefully and protecting myself against any further mental harm that could be done to me. Yes I have let this dampen my spirit, but it is all self preservation. I know how these things can go and there is nothing worse than the crashing fall that all too often comes after the heady rise.
But I had let myself begin to believe this good news. It pains me to say this but I said to my mum last week that I felt my luck had begun to change. Radiotherapy and proton had gone well, I had loved it out there, the back pain that had constrained me to a wheelchair for three weeks in Jacksonville had faded enough to be managed with pain medication, I had began to wet and poo myself less often, I had been having less bad poo days (days where my paranoia over my incontinence is diminished and the constant physical sensation that every single thing in my body is about to, in the absence of a nicer way to say it, fall out of my butthole ceases slightly). But most of all, luckiest of all, funding had been approved. Such lucky approval had taken some luck, and whoever’s it was they were sharing it with me, which is lucky in itself.
On top of the funding, my first appointment, last Friday, had gone well. My fertility consultant had explained that the blood tests in October which had been done just before my ovarian transposition had shown high levels of Anti-mullerian Hormome (AMH), which is the hormone given off by cells which will later develop into eggs. The level of this hormone in the blood is used as an indicator of the size of the ovarian reserve, the number of eggs in the ovaries. My high AMH reading was a very positive sign and meant that they could expect to retrieve a large number of eggs. In fact, it was large to a point where I would need to be watched carefully for signs of overstimulation, a condition where the hormone injections cause too many eggs to be produced and the ovaries swell painfully, sometimes giving the appearance of pregnancy.
Today I went into the fertility department smiling and chirpy. I remarked to my mum that I felt “chipper” today and we, somewhat embarrassingly, sang American Pie as we walked, laughing down the stairs of the Clic Sargent House. I told the fertility expert that I was doing really good as we sat down, but this quickly changed as the appointment took a quick turn for the worst. The results from the more recent blood tests on Friday had shown a massive decrease in the levels of AMH in my blood. At this point we knew nothing about AMH, not even what it was; all the information mentioned above we Googled in our kitchen after the appointment. But despite our lack of knowledge, that horribly familiar sinking feeling in my stomach told me that this wasn’t going to be good; even in the absence of any units or a reference guide to go by, the new number she quoted was enough for me to know this was a significant change. Basically my AMH level had gone, in the space of a few months, from above average for a 22 year old to the average for a 40 year old.
On top of that, there was another problem. I had been told before that my ultrasound had shown there was a cyst on one of my ovaries. This is perfectly normal, apparently cysts develop from follicles in the ovaries, which then in turn develop into eggs. I was told this wasn’t anything to worry about, however before today’s ultrasound there was a concern voiced. The size of the cyst indicated I may have been about to or had already ovulated and a combination of this and my blood work could mean that I was too late in my cycle to begin the harvest. For the past three evenings I had been injected with hormones to stop me dead in my menstrual tracks, so to speak. Now there was a worry that it was too late to do that; basically, it was a very real possibility that I was in exactly the wrong place in my cycle to do the egg harvest, one of the only times when the body’s hormones will work against the hormone injections and make the harvest impossible. Normally, this isn’t a problem; they can wait a couple of weeks and start in the correct part of the cycle. For me, this wasn’t really an option.mMy chemo consultant is incredibly flexible and laid back, and had already postponed the start of my chemo until a week later, but I doubt whether she would have felt comfortable pushing it back even further. Honestly, I doubt I would have felt comfortable with that.
After all this news was broken, I had my scan. I lay back, feeling useless and numb. The part about having the AMH level of a 40 year old had, although I had wanted to know, felt too personal, almost spiteful to hear. Since my operation a common feeling that I have voiced to my friends, family and psychologist is that I feel old. My body feels old. Post operatively, I had found subtle changes in my body, likes the disappearance of my ability to point my feet and splay my toes. As someone who did ballet from four to eighteen, these things matter. I would lie in my bed trying to point my feet without success, an overriding sensation of tightness in my feet that I couldn’t stretch far enough to escape. My toes on my right feet also now curl under slightly; this is a small thing but a thing that I see and feel every time I catch a glimpse of my feet. It makes me feel old.
My body doesn’t work the way it used to. I can’t wee without self-catheterising and I just can’t not poo. My body feels like it is slowly malfunctioning, breaking bit by bit. I felt like I was getting to grips with what I could no longer do, the list of the these things no longer increasing, but out of the blue I had been told a few days ago in an appointment that I would never run again because of the danger of the metal breaking. That tore me up and I hadn’t had time to recover before my fertility, one of the most important things to me, had also been largely taken away.
The news that it might not go ahead, well that just washed over me in that familiar feeling of disappointment and unsurprised acceptance. Don’t get me wrong, these things still upset me but the shock I used to feel at bad news has mostly gone. My eyes still prickle but I haven’t experienced that disbelief that I used to for a long time; there is no searching for words or moment of confusion, just acceptance.
So I lay there whilst she scanned my stomach, the cold of the jelly nor the pressure on my full bladder as she pressed down with the transducer probe, barely registering. The silence was nice, I could just lie back and take my time to process this information. It had changed everything and I was saddened by this new information, but like I said, I wasn’t surprised.
We had to wait a few hours to know whether the egg harvest would end up going ahead. The consultant needed to be, well, consulted and they needed the results of today’s blood tests to check my hormone levels and confirm where I was in my cycle. It was a tense few hours that we spent in the kitchen of the Clic Sargent house, armed with cups of tea and my now surgically attached phone. We felt bruised and there was not much to say. I’m not really sure what we did in those few hours, it’s foggy in my already fogged brain, but the time eventually passed and we got the call.
The good news is that the harvest can go ahead. This is the news I am trying to focus on, trying to cling to whilst I process the bad. The main thing is that it can actually happen, and that is a big freaking deal. The bad news is what I said before: that my AMH number is down. They will be trying to boost this number with hormones over the next two weeks. There is a hope that I am reminding myself, probably overly and, to an extent, potentially self damagingly reminding myself, that this low AMH number is not necessarily representative of the real size of my ovarian reserve. For instance, my eggs may be not producing the AMH because of the trauma they have suffered, during my ovarian transposition. If my eggs are still there, once my hormone injections take effect potentially they could wake up. The reality it looks like I am facing however, if I am being totally honest with you, is an egg harvest that results in a much lower egg count.
It is a difficult thing to accept, especially when back on Monday I was so excited about the prospect of the direction of this egg harvest. At the risk of sounding self indulgent, I had finally found something that my body could do well again. It is a shame that this has happened, a massively shitty shame, a shame that has left me exhausted and flat this evening. It is another thing that makes me feel different from everyone else and right now I am drained from all the emotion. I said to my mum earlier that I feel done with all this, this never ending slog to the finish line that feels so very far out of reach. It is hard looking to the future when so many avenues feel closed off, yet focusing on the now and taking all this one day at a time, as is so commonly advised, is impossible when what I am doing right now is precisely for my future. Knowing where to look is impossible, and so all we can do is try not to look, to an extent try not to think about what may be.
This is not a funny or uplifting post, but I am not sorry about that. Sarcoma, cancer, is not always uplifting or about seizing the day. Sometimes the day cannot be seized, the day can just be done. Today is another day done. Hopefully all days like this one will be done soon.