So Close

And then you get people like these who make it all just a little bit easier to bear

An email I received yesterday. It made me weep. Thank God for people like these, and for all the people who helped me so much along the way. Without you, I wouldn't have made it.

Hi there

it was so weird reading your book "so close''

See we (I) work at a genetics lab in (xxx) hospital and we do PGD's, lots of them, why it was weird reading your book is because I knew exactly who all the people were you were talking about. DR H< K < DR G and that made your book so much more real.

I laughed at your comments about certain people and loved that you loved the others.

Doing PGD's feels like we are part of the bigger team helping those who really wants, needs help and it is so rewarding having a happy ever after.

The thing I dislike about the work is we don't always know the story behind the PGD's and I want to thank you for telling your story so that we can see and feel and experience the heartache and joy of the person behind the lab number.

We will receive the slides with the one single cell on, which we refer to as our little babies, with out knowing the back round of the patients, why they do it, who they are and what the end result is.

Some times we will find out that the patients are actually pregnant and let me tell you it is so exciting we will go around telling every body who wants to listen that we are pregnant we are having a boy or a girl and that we met the little ones before they were even implanted.

It is a love hate job I love phoning the embryologist and telling then that one or more of the babies are normal but the same time if there are no normal babies it's always a Mexican stand off of who will actually phone because I hate giving bad news and now that I read your book I think it will be even worse.

The lady who happened to do your PGD is the sweetest person in the world. Every time we don't have good news she will cry for the babies and for the patients, how I hate it because when she cries we cry.

But just so you know in your struggle for motherhood there were a lot of unseen unknown faces who's hearts broke who shed tears and who eventually shared your (and all the struggling people out there) joy. 

good luck with your beautiful babies

kind regards

the pgd sisters

My desperation, your whimsy.

I feel that I must respond to some of the comments made on the ‘desperation’ post below. Please note this is not personal, but more a response to what many people say and think. The ‘you’ I am talking to is not YOU. It’s a theoretical ‘you’. I almost didn't post it, because I don't want to alienate the many fertiles who do 'get it', but I needed to voice my thoughts.

Firstly, let me say that I do not agree with this couple’s attempt at raising money for their IVF. I found the email deeply disturbing, upsetting and actually really insensitive. Sending me a letter in the voice of a dead baby when I lost a baby is absolutely not on. At all. It is wrong on every level.  I won’t be giving them any money because firstly I don’t have any to give and secondly, there are (many) other people who I feel need it more. However, I understand that when you are feeling that desperate, you will resort to anything. I didn’t post it because I wanted to raise funds for them, not at all. I posted it because I thought it spoke of the desperation these people must feel.

And of course, they have done themselves absolutely no favours by responding the way they did in their final comment below. That is not going to win them much support. But again, I recognize that anger. It doesn’t make it right, but I know where it is coming from.

I am not their friend, I don’t condone what they are doing, but I can understand their pain. I wish them well, I hope that they have a child one day, but I hope they will not contact me again. It hurts, please stop.

Then, on to your comments.

Firstly, let me say this: It is not our (infertiles) responsibility to ‘save’ the needy and the poor. Just because we are infertile doesn’t mean it is our duty to look after all the orphaned children in the world. That is your responsibility as much as it is mine. I could turn that argument on its head. You already have bio children of your own, why don’t YOU just adopt / “save the orphans”? Recognize that there are others who would like to at least try for bio kids of their own. Adoption is something you do because it feels right for you, for your family and for that child. It is not second best or a consolation prize, nor is it the sole responsibility of those who are infertile.

And then, on to issue of desperation. Yes, infertiles do not have the monopoly on suffering. I never pretended we did. But does it mean that because there is suffering elsewhere in the world, ours is negated? Should we shut up and just deal with it because there are others who have pain? If you lose a leg and I lose an arm, should I shut up about my pain because losing a leg is so much worse? If your pain is a 10 out of 10, does it mean that anything less is ‘nothing’?

I do know I should be grateful it is only arms when others don’t have legs. I know that.  I could argue it is easy for you say, you have both legs and arms.

Yes, there is poverty, and there is disease and there are very many needy people out there. I know this. Does this mean I should want a child any less? Because there are (many) motherless children out there, does it mean I should be a childless mother? Because my ‘disease’ is infertility, does this make me any less worthy of what many people take for granted? You wanted to become a mother, surely you understand that others might too?

Look, I am a realist. I know that there are many people out there who are hungry, cold and sick. I live in Africa. I see this every day.  I would be blind not to see it.

When I was still trying, before Adam and Kate, I used to leave for work very early, while it was still dark. On the way to work, I had to drive past a hospital, with a specialist cardiology unit attached to it. It was lit up in the pitch black of the early morning and I could see right into the ward. I could see the (mostly) men lying there, so still. Dangerously ill. Near death. Like my father was when he had his heart attack and triple bypass a few years back. And every time I drove past there, I was so grateful that infertility was my cross to bear; that it wasn’t my father lying there. That the pain in my heart was from infertility and not from losing my father. That it was me hurting and not him sick.

I do have perspective. But I also know pain.

No infertile has ever said “my pain is worse than that person’s hunger, that person’s pain, that person’s grief”. Ever. It is you who make those comparisons, not us. We know we don’t have the monopoly on pain and suffering. All we know is that our hearts ache and our arms are empty. I’m sorry if you feel we should just suck it up and get over it because others suffer more.

Yes, infertiles do not have the monopoly on pain, but that doesn’t mean their pain doesn’t exist.  In the face of so much pain, hunger and suffering in the world, their pain might seem insignificant to you, but it is very real to them. I am enormously grateful that I no longer have to live with that pain. But it doesn’t mean I’ve forgotten or that I don’t recognize it in others. It might not be your pain, but it is mine, theirs and many others. Just because they still have legs doesn’t mean they don’t mourn the loss of their arms.

Prepared

Stir crazy

 Never before in my many and varied experiences as a serial hormone user have I ever before had such a strong reaction to the drugs. These FET drugs have turned me into a bitch on wheels. A witch. A dragon. A fucking nightmare. Even I am scared of me.

I am prone to moments of total and utter overreaction. Everything is a drama.

Yesterday, as I was driving (and making a call at the same time!) the guy in front of me took 0,5 seconds too long to pull away and I went OFF:

Oh My Fucking FUCK! DO YOU NOT KNOW HOW DRIVE??? DRIVE, YOU STUPID FUCKER, GO!!!

In the meantime, as I was venting my tirade to the (oblivious) driver in front of me, someone had picked up the phone and all I heard was this timid little voice on the other end “Sjoe*, um, hello?” 

Oops! 

I actually blushed. I pretended it was a wrong number. 

I’ve got to the point where I’ve warned all of those around me: I am totally unbalanced. Absolutely batshit crazy. VOLATILE MATERIAL – HANDLE WITH EXTREME CAUTION. 

The crazy thing is that instead of seeing this as a warning of the strongest degree – CODE RED TERROR ALERT, Marko sees this as a challenge. An open invitation to see just how far he can push / tease / annoy me before I erupt.  Usual time = 1.5 seconds. 

Marko is a consummate tease. He loves nothing better than to play tricks / fool / tease people. He is forever trying to tease or trick someone. I’ve long learnt how to deal with him, by simply ignoring the bait. He thinks he is clever, but I am cleverer. Ha! (Poor Adam and Kate are his current victims, poor buggers) 

Anyhow, this situation is too tempting for him to pass up. He can’t help himself. A little poke here, a little flick there, a gobby finger in the ear.

I’ve told him. I’ve said, “I can’t actually believe you are voluntarily taking your life into your hands like this. You are either very brave or very stupid.” And still, he continues.

If Marko ends up with an axe in the back of his head, it will not be my fault. I’ve warned him, more I can not do.

 

* ‘Sjoe’ is one of those perfect Afrikaans words that does such an excellent job of describing something, and one that doesn’t seem to have a direct translation into English. I asked three of my friends who happened to be online at the time I wrote this post and they came up with ‘phew’, ‘gosh’ and ‘whoa’. So, a mixture of those.

So so

I remember why I never bring Marko along to these things. He is a pain. He tried to grab my cooter in the lift. ARE YOU BLOODY MAD!!! There is no time for shit like that now.

Thawed 3 straws (6 embies). All 4AA blasts, originally. The two expanded blasts didn’t make it, another one fizzled out. 

Actually, better than I expected. I was convinced none would make it. Was shitting myself whole morning and every time the phone rang, I was convinced it was the clinic telling me all 8 had died. Which has happened to me previously! With 11 frozen embryos!! Can you tell these things make one just a tad paranoid!

I love my clinic. Love. The embryologist came in to give me a hug. 

So we have three, and I quote “average” embryos on board. 2AA. ‘ish.

What that means in a nutshell is that I have a chance. A small chance, as in perhaps 10% chance, but it is better than no chance at all. Beta (pregnancy test) on 2^nd July. I will be peeing on a stick from about 4 days before that.  Just to totally screw with my mind.

Keep those bits crossed.

And lastly, bon voyage to the darling Dr H, no more sleeps! Have a fabulous holiday, you deserve the break. Thanks for waiting for me to do the transfer before you left. (Ok, he was leaving today anyway, but we will pretend he was waiting for me) xxxxxxxx

Think good defrosting thoughts for me please

Taking the frozen embryos out the freezer tomorrow. I have 8 day five embryos. Please think good defrosting thoughts so that I have at least two decent (live!) ones to transfer tomorrow. 

Nervous!!

The horribly familiar smell of desperation

 I received an email yesterday. It is the third time I have received the same email. The same content has also been posted on both this blog (in several places) and on my Stork Sisters infertility support site.

It is a letter addressed to me, written in Afrikaans. It is from a couple who live a little way away from where I live. They are infertile too. They did an IVF, which worked but it ended tragically when their son was delivered prematurely due to HELLP syndrome. He died 24 hours after being born. Tragic. The letter includes pictures of the little boy, shortly after his death. With all the pipes and tubes still attached. A photo just like the ones I have of Ben. Tragic, painful, distressingly familiar.

It is a terribly disturbing email, and not only because it is worded as if written by the little dead baby (“Hello Tertia. My name is Conrad but I am no longer alive. Please help my mommy and daddy have another baby”). Not only because it contains the photo of the little boy. Not even because receiving that email takes my breath away every time I get it, and not because it is begging me to contribute financially towards their next IVF (it even contains their bank account details). No, the thing that disturbs me more than any of that, is that I recognize that smell. It is the smell of sheer desperation. It turns my stomach because it is so cloyingly familiar.

When I was going through my IVF’s, especially after I lost Ben, I would have done ANYTHING to try again. Anything and everything that it took to do another IVF.  I would have begged if I thought begging would help. There were times when I reached such lows that I would have sold my soul (and anything else that would get me enough money to try again) in order to do another cycle. And I mean anything. I remember sitting at my parent’s house one night. About a month after Ben died. Hoping that would offer money for us to try again. Wondering what I could do to get that money together if they didn’t offer (they didn’t, but we managed to find the money). I don’t want to tell you the options I considered that night. I was so desperate, feral. Scary. 

It must be hard for someone who hasn’t lived through the deepest darkest moments of long term infertility (the moments where you are looking down the barrel of a unwanted childless future) to perhaps truly understand just how deep deep deep this longing is, the fear is. It is so deep, so strong, so all consuming that research has shown that infertility patients are second only to cancer patients in what they will endure to find healing / to have a child. I would have done anything to find the money to try again.

And so even though I find the email deeply disturbing, on so many levels, I can’t be angry at the couple who keep sending it to me, because I know where they are coming from, I know it too well. I know that smell, it is so terrifyingly familiar.

A letter from an egg donor

(I've added a poll at the end of this post)

A letter from a friend of mine who is an egg donor. 

Hey T,

I've gotten myself into a bit of a tricky situation. I need some outside advice.

I've done 7 egg donations. I basically did them one after another for 2 years while I was in grad school. It was a very rewarding thing, despite the hassle. I do exactly the same process as someone getting IVF up through the retrieval. It was painful at times, and took up a lot of time and energy. It was  unpredictable, since the retrieval day and the associated appointments are determined by how the follicles are developing. I also can't run for the month surrounding the retrieval, which drives me crazy. Running is the one thing I do to stay sane, and it's bad to take that away when the hormones are all messed up. Still, I knew I was doing an important thing. The money was nice, though not my main reason. I loved that I was helping people in a really difficult and important life situation.

I haven't done a donation in 2 years, even though the clinic has occasionally called to tell me a bunch of different couples want to use me as a donor. I needed a break. Now that I have a real job and responsibilities, the hassle of it is even more significant. I also am divorced, so I don't have my very supportive husband here to help me through it.

The clinic called me on Friday. A couple that I donated before had a child from it. They tried an FET with the remaining embryos and it failed. They want to have a second child that's genetically related on both sides to their first one. Thus, they need me to do another donation. I agreed to do it, because I see how important that can be for a couple, and because it seemed pretty damned selfish to say "no" just because I didn't want to suffer for a few months. The clinic told the parents and everyone is very excited that I've agreed to do this.

But every time I think about it, I am seized with anxiety. I really really really don't want to do it I don't want to go through the pain and the swelling and the crazy birth control (I'm on a nice 3 month low dose with extra estrogen to prevent migraines right now. The stuff they make me take causes debilitating migraines for 10 days when I stop the real pills until I'm fully back on them). I don't want to stop running or deal with the schedule of doing an IVF within the first few months of starting my new job. I may potentially have to skip some work travel if I do this. And I don't want to stop running for that month. I don't need the money, and it doesn't affect my decision. Everything about the process makes me want to run away, except I feel this weird moral obligation to the recipient family.

So the question is, what do I do? If I back out, will I be devastating this family? Is this the kind of thing where they might skip having a second child rather than getting another donor? Should that matter in my decision? I would really like some honest feedback about this, from you or from others who may understand this situation. Right now, I feel like I'm going to be overwhelmed with anxiety and crying until this is all done sometime in late November.

                           ---------------------------------------------------------

What would you say to my friend?  Please state in your reply whether you are dealing with infertility or not.  I would like to see how that affects your opinion, if at all.

Hands free

No more fiddling with his wire, no more trying to find the right port to plug his cable in, no more worrying about extensions and male/female cable connectors, Marko is unfettered, free to roam! Yes! I got him the wireless cooter rooter!

It was the perfect gift: trendy, good looking, stylish and practical – just the kind of gift we like. He loved it!  I was so excited about it, I had to give it to him last night. Couldn't wait till this morning.  We love that practical thing, Marko and I.  (I got Tupperware for mothers day, I was overjoyed).

I am actually quite pleased with myself. What a good idea. I love me.

PS My butt is aching, forgot just how much those effing PIO shots hurt. Pic of scar <--  You can't really see much, sorry.  Use your imagination.

PPS My shoulder / neck is REALLY sore, am off to physio this morning. See! This is why I say I am O L D! Bet a 20 year old wouldn’t strain the muscles in her shoulder from trying to blow up balloons for her kids. Stupid cheap balloons, must be made from bloody industrial strength plastic. I just about gave myself haemorrhoids trying to blow the stupid things up.

Eek!

Lining check – 9mm. Ready to start PIO. Yuck!! Those injections are bloody sore. The last time I did them I heated the oil up too much and injected the hot oil directly into my butt cheek. I burnt my arse from the inside out. Nice huh. I have a v unattractive scar on my arse, pleasant little permanent reminder of the good old bad days. I tried to take a picture to show you, but I hurt my shoulder while blowing up balloons for the kids today, so I can't twist myself around to take the photo of my arse. I also can't ask Marko because he will moan at me for posting photos of my arse on the Internet. Again.

So, transfer on Friday, can you believe that. So soon. Only four more nights to drink wine. Better put in a concerted effort.  That’s of course if any of the embryos survive the thaw. Those with direct lines, please put in a good word with the boss that they do. 

Then, I got Marko a gift. Guess what I got him? (His birthday is tomorrow, I will tell you then)