11

A devastatingly careless mistake that temporarily derailed us

As most of you following my story know, we are awaiting our CCS results in the next couple weeks or so. It’s an anxiety-ridden time (to put it mildly), as many others who have gone through the same can testify. However, considering everything, I have been doing pretty well. Having my parents around, of course, has been a great distraction. They’re about to leave this weekend so I have been spending a lot of time with them, taking them out etc.

Today, we decided to go to our neighborhood mall for another such jaunt. We were on our way when I saw K’s number flashing on the screen. Before I could pick up, the call got disconnected. Mom’s phone rang soon thereafter. I could only hear her part of the conversation. “… okay we’ll come back right away”. What’s happened, I asked her even as my heart plummeted to unfathomable depths. She said he hadn’t told her, just requested us to come home urgently as there was a call from CCRM. My mind exited and my heart took over as I imagined the worst. I didn’t know how they had the results so early but I wasn’t about to think anything rational. My heart was racing, my mouth had turned dry and my head was spinning as I sped the car back towards home.

I have no idea how I managed to park and get out but as soon as I was out, I started running towards home. Crazily enough, my body had turned to mush in response to my emotional state so I half limped, half dragged myself home. I threw open the door and one look at K’s face reflected my worst fears. I sank in a heap to the floor as he said, extreme sorrow and pain written all over his face, “all our 9 blasts arrested”. As I said before, rationality had deserted me ages back so I could not even comprehend how seemingly good looking embryos (as per the embryologist’s call two days back) had suddenly all disintegrated. I was a huge, gaping wound that was tearing up faster than I could breathe. I screamed a guttural scream and it went on forever. My pain was too great to even cry. I just kept screaming, a terrible, animal sound that was very out of place in this small, peaceful apartment community we live in. Sanity walked out of the room as I clawed at the floor, tugged at the carpet, any physical action to relieve the pain that was ripping me open. There’s been times in the past (especially when our first IVF failed) when I wanted things to end. Not like a physical desire to harm myself but more a ‘let me never wake up to bitter reality again’. Today was different. Today I wanted to end this agony. This non-stop vortex of soul-sucking loss and despair. It scared the living daylights out of me.

K told me, anguished and stricken, that the nurse had called and given him the news. He had asked her to check the chart again as it made no sense but she called ten minutes later to repeat the same damn thing and said that Dr. S wanted to talk to us. Talk for what? I spat out. What the heck good will talking do now. He also said that he had asked for the embryologist to call us because we deserved an explanation as to how this happened in the first place. Just then the phone rang. I picked it up. The embryologist asked me what the nurse had told me, even as I continued howling on the phone. I repeated what we had been told. And then, she said this:

“That is completely wrong. I have no clue why she told you this but you need to know that your blasts are perfectly fine and nothing has happened to them. I am so so sorry that you had to go through this”.

I was stunned. K looked like someone had kicked him in the gut anew. Wait, I half-sobbed, half-shouted as I asked her to tell me again what she had said. I don’t remember correctly but I think I did this several more times. She was extremely kind and empathetic as she kept repeating the same thing over and over and apologizing profusely even though it was not her fault in the least.

I cried and cried on the phone as I said thanks to her. When I hung up, K looked thunderous. He could not believe how careless the nurse had been. We weren’t fans of her to begin with; she was curt, often condescending and she never inspired confidence so I made sure to remain on top of things through the process, never trusting her completely. But this? Who the fuck makes a mistake this colossal??!!

The phone rang again. It was her. Before she could say hello, I roared at her “How could you do this???? How could you make such a massive mistake? Do you have any idea what we have gone through in the past half hour?” She said she was sorry. And she said that a couple more times. And then she gave me an explanation that made me want to scream. She saw my report and it said that there was a total of 18 fertilized embryos. 9 had arrested and 9 had made blasts. For some God-forsaken reason, she completely ignored the 9 that made it and just chose to see the ones that hadn’t. And then she called us and you know the rest.

I was stunned at her carelessness. How does a clinic that takes thousands and thousands of hard-earned money from scores of couples justify keeping a person like this on their staff? A person who cannot even be relied upon to read a damn report? You might say, mistakes happen, we’re all human and I would say yes, you’re absolutely right. I could have found it within me to forgive her for that oversight had my husband not requested her to please go see the chart again. To overlook the same thing twice in a row is nothing short of an enormous stupidity. This is not a student’s final grade. You work in a medical setting where the stakes are enormous. We emptied our life-savings on this clinic not to have our hearts ripped out of our body for something that did not even happen! You can feel heartbroken when life doles out misery but how the heck do you rationalize going through mind-numbing grief for something that never happened! As K rightly said, it’s like telling the family of a patient that he died when in reality he is getting better.

This is not like getting bad news. No once can be held responsible if embryos don’t turn out normal or if they don’t implant. This was AVOIDABLE. This did NOT need to happen. For there is no excuse in the world that will justify what we all went through in that half hour. My parents were devastated. To see your child writhing in agony and vocalizing a desire to not live anymore is not something any parent should have to witness. Or a husband whose entire world revolves around his wife. My husband was stricken. I saw him briefly lose control and witnessing his naked pain was more than I could handle. Again, there is terrible unfair sadness and loss happening all around us everyday. But this did not need to happen.

I was doing so well. I was hopeful yet guarded. I was living each day fully, feeling closer to God than I have ever before. I feel destroyed right now. I do not know how I will pass the days leading up to the result now. I do not know how I will stop myself from hyperventilating every time the phone rings. Once again, innocence has been killed. The innocent anticipation with which I awaited our results is now gone. In its place is a physical ache, an anguish that will likely keep me up several nights.

For all of you reading my blog, today I humbly request you to please pray for us and our baby blasts. It’s been a heartbreaking journey for the past three years and we really need some good news. On any given day, your prayers and your wishes would mean the world to me but today, they just might help me breathe a little easier.

8

The terror that hope inspires

I’m going to go backwards.

I will write about what I am feeling right now before I write about my retrieval. I need to talk about what I feel right now because it’s consuming me and I hope that expressing it might help give me some relief.

It was a good retrieval and a good fertilization report. Much better than what we had initially expected. God has been incredibly kind and despite immense physical discomfort that has lasted a whole month, I responded very well to the modified protocol and so far the results have been very encouraging.

Yet, with the exultation has come an incredible amount of fear. A ginormous, free-wheeling, snowballing fear that threatens at times to swallow me whole. My mind is caught up in an acerbic altercation with itself. The past keeps casting shadows of gloom over my relief even as the future tantalizingly beckons me forward. So what if you got a great response? What’s to say that these embryos are good quality? How many of them will make blasts? How many will be normal? Isn’t that what this whole thing boils down to?

I feel utterly light and peaceful one moment and mired in swampy doubt the very next. What the heck will I do if after all this we end up in the same place we were last June? With no chromosomally normal embryos. At least at that time we had the luxury of comforting ourselves with the fact that it was our very first cycle, we had a pretty low response and it could just be chance that things did not turn out right. Now, with the weight of America’s most successful IVF clinic riding behind us, thousands more dollars spent, all insurance coverage exhausted, another 7 months past… how will we console ourselves? With what will we look forward to the future? How will we breathe again?

I know K is scared too. Hope has really come knocking this time, forcing her way in even before we had a chance to decide whether or not we could have her stay as an extended guest. Fear, the houseguest who never leaves, skulks around inspiring dread. How will we handle these two hanging out together with us every day, every waking moment?

I relax when I am asleep. That’s not to say that I’m a sodding mess the whole day. I manage to keep myself busy. I am on a dedicated mission to de-clutter and organize my home. It keeps me sane. As long as there is order, I rationalize, there is life. Today I attacked the kitchen. I scrubbed the countertops and the sink till they could double up as mirrors, I mopped the floors, I washed dishes, I wiped down the cabinets. The more it shone, the better I felt. At night when I am waiting to fall asleep I plot my moves. I need to organize the closets. They are a mess. I need to sort and order. Give away what I don’t need. Throw out what is not usable. Sort, order, give, throw, clean. Even as I am contemplating a visit to the Container Store, I wonder briefly… is this the edge of sanity?

My life hangs in balance as every second, every minute, now becomes then. I feel like someone convicted of a crime, waiting on a judgement to hear her sentence. I feel like my ability to be a mother is being judged and the jury is out right now deliberating on whether or not I should be given this opportunity. I feel their arguments as my own apprehensions. My heart races. My mind wanders over to the dark side. I look at K sitting next to me, engrossed in his laptop. I want to hide in him. Sometimes, when we are lying down in bed and he holds me real tight, our limbs entwined, my face snuggling his chest, I whisper to him let’s stay like this forever, let’s be each other. I don’t know if he hears me. Sometimes I wake up in the middle of the night and I listen to him breathe. I see him blissful in sleep. My heart wells up in crazy, mad love and I believe right then that we will be very happy.

I talk to God a lot. I offer copious thanks and I plead incessantly. Often, my eyes fill up as I wordlessly, bare my anguish and present my hope, my dream as a silent, fervent prayer. I feel he is listening, I feel he is telling me my time is coming. But I am also frozen with fear. I acknowledge my fear. I no longer try to quell it. This is happening, this is real. All of it. The good and the bad. I need to stay calm and live this one day at a time. Remember the right now. Right now all is well with the world. My husband sits next to me. He’s putting on a movie on Netflix. He is drinking wine. He looks so happy. I long to see that happiness on his face forever. Right now, I am going to stop typing, go snuggle up next to him and eat some cake. Because today is perfect and tomorrow will do its thing regardless of how I feel.

5

How did I get here?

Me, the DOR girl, also known as ‘poor responder’ … how did I go from that to a possible OHSS case with a day 10 e2 of 7100?! This cycle has totally taken us by surprise. I have been responding fast and my estrogen has been rapidly escalating. Yesterday Dr S opted to coast me for a night to try get the e2 under control (it had surged from 3200 to 5400 between days 8 & 9!!) but it ended up increasing even more. I am triggering tonight but he has canceled the HCG trigger (no sore bum yay!) opting instead for a double lupron trigger and I will be taking cabergoline starting tonight and injecting cetrotide for four nights starting the night of retrieval to prevent OHSS.

I have no idea what to feel. Mostly, I am just nervous (and super bloated & sore). I hope the retrieval goes well and I hope I don’t end up getting hyper-stimulated. Good wishes/ prayers much appreciated 🙂

1

Friday humor: you know you’re an IVF veteran when…

1. It’s not ‘Sunday, Monday, Tuesday…’ anymore. It’s CD 1, CD 2, or stim day 1, stim day 2

2. You know the difference between PGD and CCS and CGH.

3. Eggs will NEVER mean breakfast again!

4. You can inject yourself anywhere (and that includes places like gas station bathrooms!!)

5.You know who Guiliana Rancic’s RE is (even if you don’t quite know her!)

6. You don’t bat an eyelid when shelling out a couple hundred dollars for some random outstanding charge at your IVF clinic.

7. You can take your pants off faster than the ultrasound technician can say ‘get undressed from your waist down’.

8. Your favored vacation destination is the Czech Republic.

9. Your tummy looks like a ‘join-the-dots’ drawing sheet.

10. You can spout off different IVF protocols from memory.

11. You have a blog.

6

Doing this…

Ignoring the half-dozen incomplete posts glowing in my drafts folder, I am going to jump straight to the present (with the promise of catching up on the older stuff very soon!).

Cue scratchy, ‘audiotape getting fast forwarded’ type of sound.

Today is day 7 of stims and my first day in Colorado. Broadly, things have been progressing reasonably well and it looks like my retrieval will happen on either Monday or latest on Tuesday. I had two local monitoring ultrasounds back home in SF and one in the morning today at CCRM. The follies are ripening and the estrogen is climbing and I’m keeping my fingers tightly crossed.

This cycle has been very different from the last one. There is the obvious difference of a new protocol; I took estrace for almost two weeks this time (the effects are quite like teasing yourself with a gun against your temple everyday!) and along with the jazzed-up hormonal cocktail that CCRM dished out to me last time, there’s also clomid (hello nausea and headaches!) making a special, 5-day appearance! Also, unlike last time this time I did not take cetrotide in the priming phase; it was only added to the mix mid-way into stimming.

Mentally, I’m in a very different place this time around. Riding the truckload of dread accompanying the realization that this was our last cycle at CCRM (unless of course I win the HGTV sweepstakes) and quite possibly the last one with my own eggs, fear terror & sadness (with a reluctant anger trailing behind) have come sailing in, entirely uninvited. The 2 months between my two cycles were days spent working hard on my teetering state of mind (more on that in a separate post). I went round in crazy circles, sinking to fathomless depths of despair & struggling to break the surface and then riding the buoyancy of self-administered hope and squeezing the future of its ability to provide the scantest reassurance. I would wake up crying in the middle of the night as an icy panic would creep up over me. Breathe, B-R-E-A-T-H-E my mind would urge my heart to pay heed. I forced myself to remember what is true today. I am well today, my life is full of love. Older (angrily discarded) platitudes would come rushing to my head —I’m a good person, I deserve to be a mother; God does well by his children…

I have battled with a crippling doubt, the kind of doubt that rips away every shred of innocence from your soul. I look back to the person I was and I marvel at how old I feel. I am proud of who I have become yet my heart aches with sadness at my inability to remember what ‘pure, unadulterated’ everyday living felt like. The joy of untainted expectation, the beauty of just living without the feeling that all of your life, everything that you believe in, everything you hold dear is being held ransom to this one event.

So what changed? Honestly? Nothing, really. I didn’t turn zen overnight and the panic attacks did not disappear. But I did not stop trying. Trying to live in the moment, trying to strengthen my faith (and this wonderful blog constantly inspires me to do so!), trying to be there for others… trying to be a better person (my only NY resolution this time!). Because it is only in this trying that I find solace.

And this is where I am today, sitting in my room in Littleton, Colorado typing out this blog post. In the next few days life could go in strangely unexpected places. I have no idea what will happen or how I will cope with whatever happens. All I am going to concentrate on is today and this moment, right now, when things are just fine.