“That was the thing about the world: it wasn’t that things were harder than you thought they were going to be, it was that they were hard in ways that you didn’t expect.” –L. Grossman
Lately, I feel like I’ve been spending a lot of time looking backwards. I know this is mostly due to the fact that we’re in Cycle 2 limbo…we have a plan, but we cannot move forward with anything. I have to get my period again before we can start preparing for a transfer (birth control, Lupron, Progesterone and Estrogen coming soon) or schedule the Hysteroscopy. It never ceases to irritate me that I’ve spent 3+ years hoping to not get my period and then during an IVF cycle I’m praying for it…the joys of infertility. I also know it’s the time of year…tomorrow is April 1st…which was supposed to be the day we heard our Warriors heartbeat last year, but instead was the day we were told I was going to miscarry. So I find myself looking back, instead of forward.
Maybe in a way my remembering is actually a defense mechanism: thinking about our Warrior who wasn’t prevents me from imagining our 3 embryos who may be. I don’t want to think about these embryos as babies or our future…I want them to stay what they are until I know they’re going to be something more. We made a mistake last time, from the beginning we made our Warrior bigger than it was. Last cycle, the minute we found out we only had 1 healthy embryo it became greater than a cluster of cells that could, possibly, eventually become a baby…that 1 lone embryo became every hope and dream Dan and I had. Then when I became pregnant that poor little embryo grew (without ever really growing much at all) into so much more. I expected our Warrior to fix everything…every moment of sadness, disappointment, grief I had suffered in the 2+ years that went into becoming pregnant was going to be healed by this tiny cluster of cells. Every unanswered prayer, unfulfilled wish, unsatisfied longing was going to be answered/fulfilled/satisfied by our Warrior. That embryo was really only ‘present’ in our lives for weeks, but I expected it to fill voids that had been growing for years. My hope was unrealistic and so when we lost that hope my grief was unfathomable. I did that to myself. And I don’t want to do it again.
A few weeks ago, before we knew our 19 went to 3, Dan and I were living in a little IVF dream bubble. We became too confident, too sure. We didn’t hope this cycle was going to give us a baby, we knew it was. We actually discussed the nicknames we would give our babies from embryo to baby (you find yourself having very weird conversations when years of your life are devoted to imaging dream babies). We both loved that our Warrior was never given one of the names we picked out 3 years ago for our children and we decided we wanted any future embryos to also have nicknames (I liked Lil Nug, Dan liked Bebop…don’t ask why we both went with names that sound like boot-leg hip-hop artists). Now, I’d like to go back four weeks and slap myself in my smug embryo nicknaming face.
So, I think that’s why I don’t spend my days thinking about nicknames or pinning nursery ideas or reading What to Expect…I can’t do that this time. Instead, I’ve been thinking about our Warrior and last year and how different I thought life would be right now. I think it’s safer this way…letting myself get teary eyed thinking about how devastating it was sitting in exam room 7…realizing that my world was shattering because a single sound wasn’t being made. Right now I have all these emotions…fear, hope, sadness, excitement and I’m afraid to project them onto our 3 embryos…I’m afraid what that could do if they never become more than what they are at this moment…and so I’m going back…to our Warrior. It’s a safe place to remember and feel the sadness and fear and also excitement and hope.
In a way, I guess there’s comfort in looking back. It’s like this one book I have… it’s the best book I’ve ever read- Kazuo Ishiguro’s ‘Never Let Me Go’. It’s a sad book actually, there isn’t a happy ending…but I love it. I’ve read it more times than I can count, there are entire passages I’ve memorized…and even though every time I read it I feel disappointed for the characters, I already know the disappointment. So although I’ll get teary eyed and feel sad, it doesn’t overwhelm me. And maybe looking back, instead of looking forward is kind of like reading that book, instead of finding a new one. I know how our Warriors story ends…it’s such a shitty ending and God I wanted it to end differently…but I know the ending. I’ve re-visited that ending a million times…it (like the book) doesn’t overwhelm me. I think I’m spending all this time looking backwards because I don’t have it in me to start a new story…and I don’t think I need to start a new story…yet.
“Well, I always know what I want. And when you know what you want–you go toward it. Sometimes you go very fast, and sometimes only an inch a year. Perhaps you feel happier when you go fast. I don’t know. I’ve forgotten the difference long ago, because it really doesn’t matter, so long as you move.”- Ayn Rand
So we got the call yesterday…the results…3 genetically normal embryos, all healthy, all ready for a transfer (transfers, because who are we kidding I’m not transferring all 3 at once). I have to be honest, I never saw it coming. All three embryos are SMA-carriers (just like Dan and I are), but not a single one is affected. I didn’t expect that. In a way, the past three years has prepared me to expect worst case scenario and yet we got best case scenario. I’m still trying to wrap my head around that. I don’t think I realized how much I was preparing myself for another bad outcome, until, we got the best outcome and I realized I couldn’t even process it because I was so shocked. What I feel now…happiness, gratitude, optimism, I don’t know how to handle it. There have been a lot of tears over the past 24 hours, happy tears. Tears brought on my exhaustion and stress and the realization that something went in our favor…we got a win. A HUGE win. I feel overwhelmed…but the good kind of overwhelmed…overwhelmed for all the right reasons.
So the plan now is to put the train back in motion. We know two stops.
It would probably be easy for me to think about other stops…stops that involve pregnancy announcements, nurseries, baby bumps, heartbeats, babies…but I’ve decided that this train is only planning for stops we have scheduled. Stops we know are coming. I’ll sit in my cabin and be positive, I may dream a bit and hope a lot…but I won’t plan. The truth is everything can still wait.
Everything, except celebrating 3 healthy embryos. We don’t have to wait for that. That’s real…and it’s more than enough to celebrate right now.
Choo Choo Choo.
So our train is still stopped…next stop TBD.
After speaking with our physician that Friday he told me test results should be in by 3/16 (I was shocked because last cycle PGD took 6 weeks, but he assured me in the past 12 months science and testing has really advanced…the nurse in me is impressed and fascinated by the rapid development, the infertile IVF patient in me just wants my results). The 16th came and went without any phone call…so I left my nurse at the center a voicemail early Friday morning (the 17th) as Dan and I drove to the airport for a weekend out of town visiting family…I told her we would be flying until noon, but if she had results to please leave a voicemail. No sooner had we landed and I turned my phone off airplane mode (I was still buckled) did my phone start buzzing and my stomach dropped…this was too punctual. My nurse (who either really likes me or is convinced I’m teetering on totally losing my mind) exclaimed she had been watching her clock ready to call me at noon so I wasn’t spending a moment of my vacation being stressed…there were no results yet and there wouldn’t be any until at least Tuesday 3/21. She told me to enjoy my time away and we’d talk as soon as she had more information for me.
So Dan and I tried to enjoy our weekend in Virginia. We spent four days visiting with his brother and sister-in-law and their two children (ages 2 and 2 months) and if anything could distract us from our infertility it’s our niece and nephew. It used to bother me, being around children when we could not have any (and yes spending our Saturday afternoon at a children’s museum did make my heart ache a little), but like everything lately…I felt different. I was able to compartmentalize a little better: yes it sucks I do not have a child, if we hadn’t miscarried, our Warrior would be 2 months older than our niece- the pain in that is not lost on me, and it probably never will be. (I doubt there will be a time when I look at her and don’t think about the child I could have). But there is no Warrior…there is a beautiful, healthy, happy niece. I can rock her in my arms, I can buy her adorable jumpers, I can feel overwhelming gratitude her parents asked Dan and I to be her godparents…and I can feel happy. I can feel happy that she exists while also feeling sad that our Warrior doesn’t…and one of those emotions doesn’t belittle the other. It’s okay to be both. It’s possible to spend my evenings falling more in love with Dan as he does bath time with our nephew, while spending my nights wide awake wondering what will become of our 3 embryos and their tiny DNA. There’s room in my heart and my head for all of it. Our 4 days away was exactly what Dan and I needed…a chance to just be Uncle Dan and Aunt Meghan (occasionally called Aunt Bacon…which I hope is because he loves me as much as he loves bacon and not because he thinks of me as a pig) and not infertile, childless SMA-carriers.
I’ll be honest though, I never really relaxed during our 4 days away. Every time my phone buzzed I felt my heart rate speed up. Any moment of downtime I started thinking about how insane it all feels…here I am sitting on a bench in Mount Vernon with my husband, while our embryos sit frozen in Connecticut and their future is being decided by a lab tech analyzing their DNA in New Jersey… It’s almost morbid to think those little cells may someday turn into little babies who sit on my lap on the same bench in Mount Vernon…or they may just be little cells that end up in a medical waste bin…and I have no control over that. (Okay that last comment wasn’t almost morbid, it was morbid…but as I said to Dan multiple times over the past 2 weeks when I’ve broken down in tears…I keep falling down the rabbit hole of what could be…and Wonderland is not all singing flowers and tea parties).
Anyway, I went back to work Tuesday and left my cell phone sitting on my computer waiting for a phone call…it never came. I repeated the same cycle on Wednesday. Finally, Thursday I called our fertility center and left my nurse a voicemail which she promptly returned apologizing but saying the lab actually needed more time because of our ‘single gene mutation’ testing (also known as that little monster SMA)…long story short: we’re still waiting.
So now, like I said, we keep the train stopped and we wait. The good thing is we have destinations in mind….we either have a healthy embryo, meet with our physician April 10th, schedule a hysteroscopy, and attempt a transfer…or we don’t have a healthy embryo, meet with our physician April 10th and prepare for Cycle 3. (Dan and I both agreed we’ll do a 3rd cycle of IVF if necessary, neither of us are ready to jump trains altogether). Until then, I’m doing everything in my power to keep myself busy these next couple of weeks. I’ve packed my schedule with overtime at work, lunch with friends, phone dates with my older sister where we spend an hour discussing our favorite TV shows and date nights with Dan. I have a closet of art supplies and a Pinterest page of DIY projects waiting for me. I’m book swapping with a girlfriend (because we’re both living our best nerd lives these days) so I’ll have 3 new books to occupy me. I’m not naïve enough to believe any of these things will prevent me from stressing about our results, but they’ll give me momentary reprieves and that is all I can really ask for these days. I don’t know how to describe how I’m feeling lately…I’m not as overwhelmingly sad and disappointed as I was last week, but I’m nowhere near as positive and optimistic as I was 3 weeks ago. My aunt e-mailed me last week after reading my blog and encouraged me to take a step back (her words: wait for a heartbeat before throwing yourself wholeheartedly into baby planning…everything can wait). And she’s right…everything can wait….so we’ll wait…I’ll let you know when the train starts moving again.
“Our willingness to wait reveals the value we place on what we’re waiting for.” –C. Stanley
…still playing the waiting game.
“Let’s not look for silver linings, or send our wishes to the stars.
For there is danger in our pining, and we are safer where we are.” –L. Leav
Update: still waiting on the results of our 3 embryos. Had a 45 minute phone conversation with our physician last Friday…as always, there are more questions than answers. Our fertility center is associated with a school of medicine and my chart is currently being reviewed by their head of embryology to see if they have any insight as to why so many failed. If any of our embryos are healthy my physician told me he is not comfortable transferring until I have a hysteroscopy…so I have that to look forward to… OR…if we do not have any healthy embryos my physician wants to change our stim cycle protocol (these past 2 cycles we’ve trigger with Lupron, he would switch to an HCG trigger)…I try to focus on being thankful that we have options, (no one is saying give up, no one is saying we cannot have a baby) but these past couple of days have been difficult. One upside, the author of the quote above is someone I follow on Instagram and she posted this particular poem this morning…it’s always encouraging when I read something that speaks to my soul, as if I’m not the only person in the world who feels the way I feel right now. I’ll take the tiny wins these days my friends.
I hate to stop the train before we’ve reached our destination, but this positivity train I’m on is taking a route I didn’t want to travel and I’m not sure I feel like riding it to the end of the tracks…I’m starting to think this train is traveling somewhere I do not want to visit.
Translation: things are not going the way I had hoped for.
See, yesterday I was at work chatting happily with a co-worker who goes to the same fertility center as me. She is currently pregnant after her second attempt with IUI and though our roads to fertility treatments have been very different she’s been a real ally through this process. When she told me she was pregnant there wasn’t even an ounce of jealousy on my end (you know that little green monster who pops up every time you find out someone is pregnant when you’re still not…) I was just genuinely happy for her. So yesterday, she was basically keeping me entertained (and my mind occupied) as I waited for the phone call from our center telling me how many samples would be sent for PGS/PGD testing. My phone was on the computer in front of me when I realized I had a missed call from our center “shit!” I yelled and we both hurried into the back room to listen to the voicemail. I listened once and then looked at her and said “this can’t be right…let me listen again…” but I had heard correctly…embryo count: three. Three samples being sent for PGD/PGS testing… if you’re keeping track that’s 3 out of 19…that’s 16 lost…16 that failed to develop. I looked at my kind, thoughtful, pregnant friend with tears in my eyes (and hers too) and just felt this overwhelming sense that my positivity train had been hijacked.
Ever since the miscarriage I’ve taken to describing myself as an optimistic realist. The miscarriage did not take away my hope, but it forced me to recognize that nothing is guaranteed. I still trusted in the science of IVF and PGD, I still respected the medical expertise of our physician, I still believed Dan and I would be parents, I still hoped that child would be genetically ours…but I understood science and medical expertise and beliefs…they don’t give you a baby. So I’ve been cautious. I’ve imagined life with a baby, but haven’t allowed myself to become fully invested in planning for that life. I built a safety net around myself. Optimistic…but realistic. It’s worked for me.
But then last week we heard 19…19 was more than we could have imagined. 19 was a phenomenal number. First cycle we had 13 and 9 failed to develop (which they said was a pretty high number) so naively Dan and I assumed if this cycle we had 19, worst case scenario is 9 fail to develop…that’s TEN for PGD/PGS testing. 10 is an amazing number. 10, well, 10 basically promised healthy embryos.
So I allowed myself to not just dream…I allowed myself to plan. I went back to my ever optimistic old habits. Dan and I discussed names…plural. I started looking at strollers and cribs again. I planned a pregnancy announcement. I even came up with a way to surprise Dan with the number of healthy embryos I imagined they would call with after PGD/PGS…I actually was telling my kind work friend said plan yesterday…probably while our center was leaving the message about 3. I discussed with my sister how to ensure our children we’re best friends even though we live states apart. I saw our future…a future with babies…and I believed in it. I trusted in it. I felt, for the first time in a long time, this happy, child filled future was promised.
And I really wish someone had reminded me to be realistic. I really wish someone had reminded me I’m not the conductor of this train. I really wish I had remembered that nothing is ever promised.
So now we wait. The nurse told me yesterday our physician had written a note in my chart that he planned on calling me today to discuss how we should proceed. I’m not sure what that means. I do not know if he has a scientific explanation for why so many failed to develop. I do not know if he is concerned about the quality of these remaining 3 embryos. I do not know if he also remembers that last time we had 4 embryos and 3 were not healthy. I don’t know why he’s calling…but I’ll find out soon enough.
And then we’ll wait some more. We’ll wait for PGD/PGS to be completed. We’ll wait to see if any of these 3 embryos are healthy. We’ll wait to see if in a month we can attempt a transfer.
But I won’t dream or plan while we wait. I won’t think about babies…or being pregnant…or even having an embryo to transfer. I won’t be hopeful or optimistic or positive. I’ll just wait. I think the safest thing I can do for my heart and my mind is to just stop the train. We don’t know where we’re going anymore. And I think instead of packing and planning for a place we might never get to…we’ll just wait in the place we’re in right now. We’re safe here…so I think it’s best if we don’t move.
“I want it, too, the impossible lighter-side book. I will always be a woman whose first child died, and I won’t give up either that grievance or the bad jokes of everyday life. I will hold on to both forever. I want a book that acknowledges that life goes on but that death goes on, too, that a person who is dead is a long, long story. You move on from it, but the death will never disappear from view.” –E. McCracken
*Finished reading the incredible memoir this quote is from (An Exact Replica of a Figment of my Imagination). It was so profoundly moving I cannot even find the words to describe it. All I can say is: read it, read it, read it.
*Update: Of my 23 eggs, 19 fertilized (sign from universe: the handsome husband and I shared our first kiss on my 19th birthday). We should know by tomorrow how many of the 19 developed far enough for DNA extraction for PGD/PGS. Positivity train still chugging along… CHOO CHOOOOO.
Well we’re officially done with stimming cycle 2. It was definitely easier this time around, which is surprising because I was on a much more aggressive medication plan and my body responded significantly better (higher follicle count), but I felt better. The first time around I was so scared, every ache or pain felt as if something was wrong, I questioned every result. This time I just kind of gave in to the process (okay, not completely I did question my doctors decision to trigger me a day earlier than I wanted), but for the most part…I let it be. I kept saying to Dan “It will either work well, or it won’t. There is not much more we can do.” I guess like most things IVF is something you become better at if you have to do it more than once.
So yesterday I went in for my egg retrieval. At my ultrasound on Tuesday there were 16 measurable follicles in the right ovary and 13 in the left ovary so we were optimistic about a good number of mature eggs. When I woke up from anesthesia (quite poorly might I add, I was crying for some unknown reason) the nurse informed me they had retrieved 23 mature eggs. 23…do I have any connection to the number 23 I wondered and in my anesthesia haze I turned to Dan and said “I always liked the Jimmy Eat World song 23” he laughed at me and replied something along the lines of “good sign”-Dan’s used to me making connections like this- it’s kind of m.o. I’m always looking for signs from the universe. So a connection to a song I’ve liked since I was a teenager and watched too much One Tree Hill (I was more team Brooke, but Peyton did have excellent taste in music)…positive sign.
We’ll be happy with 23, we’ll be thankful for 23, we’ll even celebrate 23. Of course, we’re realistic, we know 23 eggs does not mean multiple (or any embryos). We know that yesterday’s number was just the first number we received. Today they will call with the number of eggs that fertilized. Next week they will call with the number of embryos that make it to day 5 for DNA extraction.6 weeks from now they’ll call to tell us how many of those embryos are healthy. 23 is just the start….but it’s a damn good start. And we’ll take it.