The past couple weeks have been a complete mess, to say the least.
On the 23rd, I went in for bloodwork and another scan. While we were unable to find anything other than a tiny fluid collection, my hcg level did do it's doubling thing up to 535. My RE called to say that I had a choice to make. It was probably too soon to be seeing anything on ultrasound but, with an embryo that's been out of the freezer this long, it probably isn't viable anyway. I can choose to take the methotrexate shot to terminate or wait it out a few more days. With doubling numbers, I don't know how anyone could decide to terminate. So I chose to wait.
We went back in three days later on the the 26th for more bloodwork and scanning. To our surprise, we were able to see that the tiny fluid collection had grown to 3.3 mm. There was no sign of a yolk sac yet, but I was starting to have a little bit of hope for this embie. This was the first time in 26 days that we'd been able to really get an eyeball on this little one. And more good news came that my hcg doubled again to 1,080. You would think it would be reason to celebrate, right? Nope.
When my nurse called later that afternoon, she instructed me to stop all medications. She said that, with no yolk sac, this embryo could not survive. I heard what she was saying... all the instructions... all the meds to discontinue... the next hcg check where we'll hope for declining numbers. I heard it, but I was repeating "no, no, no, no" in my head while she was talking. I told her I respectfully decline to accept their medical advice. I could not stop my medication without waiting to see what happened to this little blob we'd been watching. She confirmed with the doctor that they would give me two more days. Two measly days for this embie to get its shit together and start looking like it's going to make it. Straighten up and fly right.
Here is where things got really difficult. My husband wanted me to stop everything. He felt like we had been through enough. I was torturing myself by continuing this madness. He said he was sick of stabbing me with needles for the past 3 years. He was done with all the tears, all the waiting, all the devastation. He wanted to stop, close this chapter of our lives, and put this whole mess behind us. And he was right. He was 100% right. But I saw it from a different angle.
When my nurse had called earlier that day, she referred to this embie as a "fluid collection." They were calling this a chemical pregnancy--not able to be seen on ultrasound. And for some reason, that really bothered the hell out of me. I knew this blob was my embie... I knew it wasn't just fluid. I wanted that confirmation. I wanted to be able to say that we saw it... it grew...we watched it grow more... it was real. How ridiculous does it sound to say it out loud? But I felt like this was the only time I would have with my embryo, and I wasn't going to give it up. I know it's not going to make it, but it's mine, and I want to see it again. My husband agreed we would wait the extra two days.
I went back in on the 28th, a Sunday. The little sac grew from 3.3 mm to just over 5 mm. However, we were still unable to see any sign of a yolk sac. The doctor spent a solid 15-20 minutes of working with the ultrasound machine, adjusting all the controls, working different angles, trying anything to get the best picture possible. He even had me switch rooms to try again on a machine that was slightly newer/more sensitive. But nothing. He said that he wanted to be 150% sure that there was no sign of anything developing inside the sac, and he was confident there was not. He also spent some time checking my tubes/ovaries/cervix again and still couldn't find anything of concern outside of my uterus. So he felt I would be okay to try to miscarry naturally. I thanked him when he was leaving for looking extra hard for me. I could tell he was a little emotional about it too. I wasn't just another patient to him that day.
That afternoon they called to say that my hcg rose from 1080 to 1690 in 48 hours. So they wanted me to stop all meds and come back in two days for another u/s to be sure nothing appeared in my tubes. The nurse, not my usual nurse, said this growing spot "could still just be a fluid pocket" and not my embryo, which really had me about ready to lose all self-control. I know it's not fluid. And I think it degrades everything I've been through to tell me that this is fluid. But I felt confident at this point that stopping was the right choice.
Yesterday I had another ultrasound, which confirmed for me once and for all that this was our embryo. The doctor, as soon as he picked up our blob on the screen, said this is definitely the embryo. He said the shape had filled out, it had continued to grow, and it was clear that our embryo was not a fluid pocket. I knew that there was no chance for survival of this little bugger, but I felt this moment of joy to know that I was looking at our embryo. I was right. I knew it. I told them so.
Later that day, my nurse called to report that my hcg had increased to over 1800. Because the numbers were still climbing, they scheduled me for a D&C. I'll go in for that next week, although I have started bleeding. Hopefully, I won't need the procedure.
July has quite possibly been the most difficult month of my life. We transferred this embryo on June 30th, and every minute of this month has been part of some sick roller coaster ride. But it was also a crash course in strength, patience, and persistence. I'm proud that we made it this far, and I'm SO proud that it made our little family stronger instead of tearing us apart. We're not sure what will happen for us next, but man, we put up one hell of a fight.
Hello??? Anybody in there? It's me... out here standing at the gates of pregnancy. If I could just have a hint... a sign... something letting me know if I'm going to make it in? Remember me? I miscarried on Mother's Day? A little courtesy wink or nod letting me know what's happening here would be great. I think I've earned at least that. No?
It's Day 14 of Pregnancy Purgatory, and I believe I'm starting to lose my mind. It's been two weeks since we received the news that our first beta was too low to be a healthy pregnancy. But we've been holding on to a microscopic shred of hope because our numbers started jumping... 14, 15, 40, 120. They're climbing, so only time will tell where this thing is going.
I go back tomorrow, Tuesday, for my next bloodwork and ultrasound appointment. I've been really good about keeping my level of hope in check. But it's getting more difficult. Today, I found myself being far too hopeful.
For the past 2 weeks, I've only been filling my pill box with enough medication to make it to the next appointment. I've anticipated that each appointment would bring horrible news and I would be instructed to discontinue medications. To my surprise, that has not happened yet. But today, I noticed that I filled my pill box for the week without realizing it. I am starting to assume that this pregnancy will make it... that I won't be instructed to stop my medications tomorrow. I can't tell how I feel about this.
I know that hope is a good thing. It's positive energy, and I believe positive energy brings more positive energy. But when you're on the losing end of hope for so long, you just sometimes feel that hope is for suckers. And I don't want to be suckered again. It hurts like hell.
So, here I am with a full pill box and another beta staring me down. Screw it. I'll err on the side of hope this time.... Just this once. But if I don't make it through these gates tomorrow, I'm staging a sit-in.
While in pregnancy purgatory over the past four days, I've received lots of support from friends and family in the usual varying forms. There's been lots of talk about God's plan, which falls on my completely deaf ears. (I refuse to believe that a God would plan and intend for infertility to happen to good people while stories of child abuse abound--including a mother who recently ate her baby. If that's the plan, someone needs to go back to the drawing board.)
But I kept hearing one bit of encouragement that really had me confused: prayers for the strength to keep trying. We've now been through eight consecutive failed cycles of IVF. We have no idea why embryos implant and then cease to develop appropriately. We have no idea why PGD-tested embryos go in, but never make it out alive. They're sucked into the black hole vortex of my uterus, never to be heard from again. And we just don't get it.
Right now, we have two genetically and chromosomally normal embryos sitting on ice waiting for us to decide what to do next. (Well... first we're waiting to see what happens with this struggling embie that's half-attached. THEN we're waiting to decide what to do next.) And I can't help but ask myself if the only way to be "strong" is to try again. Can't I walk away and still be strong? Can't I throw in the towel and resign myself to enjoying the beautiful life that I currently have and still be strong? Can't I just stop making lemonade? I think so.
Strength is so typically associated with persistence, the ability to overcome, and refusal to quit under any circumstances. But strength should also mean the ability to admit when a struggle is starting to suck the life out of everything else that matters. Strength is being able to look at a challenge and say that it's not worth the cost. Strength is staring in the face of infertility, the thing that keeps you from what you want most, and saying I don't want to fight anymore. Truce.
So, here we are. Pulling together a truce agreement. Trying to pick up all these heartbroken pieces and put them back together in a way that makes sense. In a way that makes us stronger than all of this loss. It's hard. It's going to continue to be hard. We've known nothing but IVF for the past 3+ years. But we're ready. We're calling a truce.
There's pregnant and there's not pregnant, but there's also this awful area in between that we'll call "a little bit pregnant." That's where I am. My beta on Tuesday was only 14. Not high enough to be blissfully pregnant, and not low enough to be able to stop all these awful meds and injections. Pregnancy purgatory... waiting for a final decision. And it sucks.
I know, although my nurse so sweetly suggests that we hold onto hope, that the fate of this clinging embie is not good. I've been down this road. I had a low beta once before that didn't quite double every two days, and it ended in my first miscarriage at 6 weeks. It was awful and painful, and I'm dreading this happening again.
I went in for bloodwork this morning, so hopefully we'll get an idea of where this thing is going today. But I did have one extra pregnancy test in the closet and figured I'd use it to make sure that the line is getting lighter. It didn't. It stayed the same... the same faint pink that it's been since the beginning.
Faint pink means that I'll probably have to go back for monitoring in another few days to make sure my hcg drops to zero. I don't really want to be there. Sitting in the same chair I sat in when I was hopeful and excited... now aggravated and sad. I have a hard time mustering up my silent, polite smile when I'm angry.
To cheer myself up, I've been reminding myself of all the fun things I can do again once I'm out of pregnancy purgatory. I can have a venti, full-caff, iced mocha latte from Starbucks. I can drink an entire pitcher of sangria all by myself. I can stop asking, "Does this have Splenda in it?" I can go back to Zumba classes. I can clear my mini-pharmacy off of my kitchen counter. I can stop hiding my sharps container every time the doorbell rings so I don't freak anyone out. I can have sex again. I can bungee jump (although I wouldn't... it's nice to know I could).
They're minor consolations, but they're at least enough to keep me from going mad while I wait for today's phone call. Keeping my fingers crossed--and I can't believe I'm saying this--that my number is lower. I just want this to end peacefully.
I'm very lucky when it comes to the 2-week wait (or 2ww for those of us who prefer infertility hieroglyphics). My wait following the embryo transfer isn't exactly a full two weeks. It's actually only 9 days before my RE has us come back in for the beta to test for pregnancy. That gives me five fewer days to obsess, panic, and analyze every pinch, twinge, cramp, or swell of emotion. I'm very lucky in this sense, but damn, waiting any length of time sucks!
The 2ww is amazingly capable of slowing time to a careening halt. From the moment you leave the recovery room, the seconds begin to tick away with the lethargic speed of a dying snail. Clocks, in some sort of conspiracy to drive you mad, dawdle the hours away as if they were sipping lemonade on the docks of Key West watching the sunset. Doesn't time know I'm going crazy over here???
And, in typical neurotic 2ww fashion, paranoia sets in about everything that could possibly go wrong. Failures of cycles past come knocking each day to remind me NOT to:
1) Use the restroom at Target--it causes miscarriages;
2) Lift a 15lb. bag of dog food--it causes chemical pregnancies;
3) Scrub gunk off of the tile floor in kitchen--it causes miscarriages;
4) Think negatively about another driver on the Parkway--it makes embryos disappear;
5) Eat, smell, or even look at chocolate--it causes chemical pregnancies.
Anything I was doing during or around the time I found out an IVF cycle was a bust is added to the list of things I can't do. And 9 cycles in, it's hard to keep track anymore.
I know it's irrational. I know none of these things actually caused my cycles to fail; but when there's no rhyme, reason, or rational explanation, you cling to what you've got. When your RE has explored every avenue and can only respond with a bewildered (yet compassionate) shoulder shrug, you wonder if there wasn't something funny about that Target restroom that day.
So now that I've poured out my rant on things that have gone horribly wrong, I'm back to reminding myself that thinking positive is way more beneficial. On the bright side, four days have passed. I have five more days left until my beta, and only 24 hours until I start obsessing over home pregnancy tests.
Happy 4th of July!
Today was transfer day! This afternoon, at approximately 3:15 p.m., we transferred two, beautiful, PGD-tested embryos. Now, we wait with fingers crossed to find out if one (or both!) stuck!
It's crazy how this day sneaks up on you, especially after a long, drawn out fresh ivf cycle. The build up is relatively painless, if you don't count the pain of the progesterone injections. And the timing is quick... just a few weeks from start to finish. There's no worrying about follicles or timing trigger shots. There's no painful recovery from surgery, no anesthesia, and no worrying about OHSS.
The one thing that is the same though--exactly the same--is the nervous energy, the desperate feeling that you'd give ANYTHING for these embies to stick, and the killer anticipation that follows as you wait for beta day. And that's where I am now... nervous, desperate, and anticipating a bfp in 9 days when I go for my beta.
Until then, I'll be chowing down on pineapple core and popping Benedryl like it's Pez. And, of course, trying to figure out exactly when to start the hpts. It would be nice to be one of those ladies who can wait until the beta, but I have the patience of a housefly. I'll POAS by the end of the week.
I was looking forward to Cycle Day One again, but not like before. Before, I was almost giddy with anticipation. I felt happy to walk into my RE's office again. It felt like a fresh start... a happy beginning.
This time around, preparing for our 9th IVF cycle, I'm feeling a little more beaten down and a little more damaged. I'm hesitant to feel excited about this again--and with good reason, obviously. I thought we had nailed it... pregnant for a whole 7 weeks. It was a devastating turn of events when things went wrong, and although I'm physically over it, I'm not quite sure how emotionally over it I am.
We talked about whether or not we should continue. We've reached that point where carrying on with another cycle sounds exhausting, and calling it quits brings the promise of a a deep sigh of relief--from us and from our wallets. But we have these 4 frozen embies waiting for us, and I know that if we let them go, I would wonder for the rest of my life if one of them could have been my daughter's little brother or sister.
We can't quit now. We can see the finish line. If we make it through all four of the embies and come away empty handed, we'll at least know that we tried everything. And if it works, well, then we've won our final battle with infertility. But either way. there's no time for wallowing in sadness--we're racing biological clocks here.
So, we're trudging ahead and already a week into this next transfer cycle. I started Estrace last week to build my lining and, after bloodwork and ultrasound today, have been given orders to double the dosage. I'll go back in on Friday for another check to see how my lining is doing. We're anticipating that I'll be ready to start Progesterone at that point.
It's happening so fast. My head is spinning. But, with a finish line in sight, I know we're doing the right thing. We're squeezing every freaking bit of juice out of this lemon and, hopefully, it will all be worth it in the end.
Well, here we are again-back at the start of another IVF cycle. It feels a bit like Chutes & Ladders... just when you think you're about to win the game, you land on that damn chute that sends you careening right back to the beginning. But we've dusted ourselves off and are ready to try again.
We met with our RE a few weeks ago to talk about what went wrong with our last cycle. He didn't have any real answers... just speculation about what could have happened. Unfortunately, not much about my reproductive system makes sense, so it's impossible to know for sure.
It could have been that our embryo, although biopsied and deemed chromosomally normal, was mosaic-ed. So the cells that were biopsied happened to be normal, but the rest of the embryo was not. It could have also been that the embryo was forced away from the lining when a subchorionic hematoma ruptured. Very rare, but possible.
The important point of our conversation with our RE was that there's nothing we can do differently. We have now run every test that we can possibly run. I gave 15 vials of blood just before this appointment to look for clotting disorders, lupus, thyroid disorders, protein abnormalities... everything came back negative. I had another saline sonogram to check for anything suspicious in my uterus... everything looked great. Now, we just have to try again.
I'm on a cocktail of estrogen and progesterone right now to build my lining in preparation for my "endometrial disruption" on Friday. This 30-second biopsy-like procedure will hopefully create a healthy, white-blood-cell-filled lining when we start building things back up again after my period.
I'm glad it's not Mother's Day anymore. It's one of those days when everyone tip-toes around the infertile making sure not to say the wrong thing... which inadvertently leads to a barrage of "wrong things" spewing out in every direction. And call me crazy, but I was super-sensitive to them this weekend. My miscarriage seems to be winding down now, but my (our) emotions are still running a bit high.
I am, through a blessing from the universe and a successful ivf cycle, a mother to a beautiful 3-year-old. And I am thankful beyond words for every minute I spend with her. Every tantrum, every irrational meltdown in the middle of Target, every refusal to fall asleep at night... all treasured moments because I know how impossibly lucky I am to be able to experience them. I never forget this. Especially not while I'm in my 3rd year of trying to get pregnant with baby #2. But that doesn't stop friends and family from continually reminding me, "At least you have Jocelyn." I must have heard it a dozen times this past weekend.
I remember reading, in an article about how to support women struggling with infertility, that the "at least..." argument was not really supportive, and it's true. They compared it to telling an amputee that "at least" they still have another leg. It's not helpful, and it's insulting. It assumes that I have become so focused on ivf that I've completely forgotten about the child I do have. Nothing could be further from the truth. I've become so focused on ivf FOR the child I do have. I probably would have given up 5 cycles ago if it wasn't for how badly I want my daughter to have a sibling to grow up with.
Of course, there's a worse argument I got to experience this weekend, the one that hurt the most--the salt in my lemon-stung wounds...the "just relax" comment. And it came from someone who knows, in great detail, just how much we've been struggling with this. It came from someone who knows how we've emptied our bank accounts and extended our credit into the abyss to pay for all of this treatment. And it freaking hurt.
She said, "You hear all these stories about people who struggle forever to get pregnant and when they finally stop trying, it just happens! They learn to relax and it works!" I had to look away. She turned to me and said, "Right?" And I couldn't dignify it with a response.
I looked into space hoping that a white screen would fall from the sky displaying a PowerPoint on how the human reproductive system functions. I could click through one slide at a time and hope that maybe, just maybe, visual aids would help explain the situation we're in. Perhaps an animation or brightly-colored pie chart would make it clear that we have zero chance of getting pregnant naturally.
Later that evening, I cried on my husband's shoulder about these comments, wishing that people could just "get it." But I've come to realize that there's only one group of people who really understands infertility, and that's the infertile. I am so lucky to have stumbled across some amazing women through this journey, and we all have each other's back. When I finally get around to making my "Infertility for the Insensitive" PowerPoint, I promise I'll post it for all to use.
When you're actively struggling with infertility, you learn to make a lot of lemonade. Sometimes, it seems, that lemon after lemon just keeps coming your way. And you try so hard to see the positive, to squeeze every little bit of hope out of that lemon, but sometimes lemonade just plain sucks. It sucks, and it stings your wounds.
Yesterday, we went to go hear our baby's heartbeat. At just over 7 weeks, we were pretty sure we'd be coming home with a glossy new picture of our bean and an audio recording of his beating heart. My husband had his cell phone ready to record the ultrasound, and I sat nervously on the exam table... half excited and half afraid that we's see a subchorionic hematoma because of the bleeding I had a couple weeks ago. But we were hopeful... "cautiously optimistic" as the doctors had suggested.
When the doctor started the transvaginal ultrasound, I knew right away that something was wrong. He was going back and forth, zooming in and out, adjusting the brightness and contrast. He asked the nurse to read back the numbers from my last ultrasound. He stopped. He started looking around again. Back and forth again. Then, he made that face where you squeeze your lips together real tight because you know what you're going to have to say but just don't want to say it out loud. "I'm not seeing what we should be seeing at over 7 weeks." I could have thrown up right there. The only thing we could see on ultrasound was a shadow of a gestational sac--an empty gestational sac.
I cried on the table while the doctor was apologizing. I don't remember much of what he said besides, "You guys have been through so much." And we have. And I cried harder because we've been through so much.
Later that day, I got my bloodwork results back. My hcg had dropped from nearly 5,000 to just 19. I was ordered to stop my estrogen and progesterone immediately and wait for my body to miscarry naturally. I spent the past 7 weeks praying not to see blood in the bathroom, and now I can't will it to come soon enough. I just want it over with so I can move on.
I have an appointment scheduled with my RE for the 16th to talk about what could have happened. This was, after all supposed to be a genetically and chromosomally normal embryo. I feel like there has to be something that we're missing--a reason why nothing will stick or grow in my uterus. Something had to have changed since my daughter was born over 3 years ago, but I have no idea how to figure out what. We'll see what my doctor has to say and decide where to go from there.
And as sad as this post may seem, I do still feel hopeful. I laughed today... a bunch of times. We went to get ice cream by the beach after dinner, and I almost forgot that anything was wrong. I go back and forth between that empty feeling of loss in the pit of your stomach and a feeling that we'll get this eventually. I know, from being through this so many times, that eventually I'll feel nothing but hope. The loss will fade and the promise of what's next will take over. And once everything passes, physically and emotionally, I'll be even more ready for my rainbow baby.