Over the last few months I've gotten some emails from people in different situations asking me if I think they should be hopeful, or if there is any hope in their situation. Then yesterday, while working on our documentary, Noah found the clip below, so I thought I'd share.
Confession--I am not naturally a super optimistic person. I'm not pessimistic either, but I'm very realistic and perhaps fairly scarred by what has gone down over the past several years for us here on IF Island. I was very optimistic during our first IVF cycle, and then I learned how heartbreaking it is when things don't work, and my blind faith in assisted reproductive technologies was gone.
With each cycle and procedure we've done, I have found a way to be hopeful. I've geared up mentally and physically, and have had a terrifically optimistic husband at my side, keeping my doubts in check. I never went into anything unless I knew I felt open and hopeful, and I've learned how to cultivate that a bit.
The emails I have gotten lately are from people who have gone through similar losses and disappointments on IF Island. Women with a very low first beta, or few follicles, or only one normal embryo after PGD testing over 20 embryos. They ask me if I think there is any hope, and all I can do is think about the moment in the clip below.
This was shot the day I got my first beta results from the embryo donation cycle. I had taken a home pregnancy test the day of the beta test, which looked like this:
And then I took a blood test that confirmed that faint whisper of a line with the number 23. The fertility clinic nurse said I was "technically pregnant" but that the number should be closer to 50. When I asked if there was any hope, the nurse said something like "you never know," but basically said this number was not that good. Needless to say, I was hysterical (see below) and Noah continued to cheer us on:
My brain thought it was over. A 23??!!! But my heart wanted so badly to believe things were going to pan out. Comments on the blog from others who were in similar situations that turned out positive really helped me, as did doing some hypnosis work with my friend Lauren, who is a trained hypnotherapist. I went to her house at night during the week I played beta roulette and she drilled into my fearful subconscious that my beta numbers would double, that Momo was growing, and helped me visualize and imagine the sound of my doctor's voice giving us good news. I did my best to push aside the fear and doom, and found a way to be hopeful.
Being on the defense sometimes feels like a good idea--believing nothing good will happen somehow convinces us that we don't care or the fall won't hurt as much. But it will. Because deep in our hearts lives a hope that all of us who dream to become parents just can't crush. We wouldn't be going through all the procedures and crap if we weren't in it to win it. So we have hope whether we want to believe it or not.
The several women who wrote me asking about being hopeful did not all have positive outcomes. For some, their beta numbers rose and then fell, or the transfer of the one normal embryo didn't end up working. But should they not have been hopeful? Should they not have believed? Would that have made it better for them? I don't think so. My theory is you believe until the curtain falls. You put a positive energy into yourself until someone pulls the cord.
A few of the gals who wrote in did have positive results. One gal did an FET of an embryo that she was told became a blast on day 6 and was of poor quality. It was one of three embryos that formed from over 26 eggs retrieved. And it worked! We never know.
My starting beta at 23 is now an 18 week old fetus, who I think I felt doing a fist pump last night when the Giants won the baseball game. I wasn't hopeful all the time, sometimes my personal goal was to just be neutral and not let any negative energy seep in. I tried my best and I've learned that sometimes hope is all we have.
Sending lots of hope to everyone out there waiting to see what happens.
Dear Kelly,
As much as it hurts right now, know that you're not empty. Your heart is bleeding, and hope may have taken the back seat right now as you and your husband need that space to grieve and process these results. But it is still there..
As crazy as it sounds, you will find your way out of this. One day you'll wake up and find a way that works for you. Repeated failures like you (we) experience are unfair. Every failure reopens older wounds and deepens the scares. I totally relate and share your pain and I pray for you guys. Don't give up hope. Please don't. My mom always says : "When there is hope, there is life". Moms are always right. So, hang in there Kelly. Please do. XLove.
Thank you Maya for lending your blog to this. I get so much positive energy from you and your readers. Hugs.
Posted by: Mel | October 31, 2014 at 01:17 AM
Melissa-
Will you email me? Would love to chat more!
My email is [email protected]
Posted by: Caroline | October 30, 2014 at 07:37 PM
Kelly,
I am so sorry things didn't work out this time. The pain and grief must feel overwhelming. I just wanted to reach out and let you know that you are not alone and I will be thinking of you both. Try to take one day at a time and allow yourself time to grieve.
Lots of love and prayers.
Anne
Posted by: anne | October 30, 2014 at 02:34 PM
Hi Kelly. I'm so sorry. That's all I can say. You inspired todays blog post and I hope you can take good care of yourself and heal. It's such a devastating loss and you've already been through so much. Ugh. It's terribly unfair and I send you all the strength and love in the world right now.
Posted by: Don't Count Your Eggs | October 30, 2014 at 01:50 PM
it's over for me. A negative Wednesday and this morning and now I've started bleeding. We have no money to carry on and my husband feels he can't go through it again. I can't quite get my head around not being a mum. It's all I've ever wanted and now I really have to face the reality of this possibly never happening for me. My sister gets upset when I say that, she wants me to stay hopeful. But I can't. I have to be realistic. This has been 4 years, 2 operations, 7 cycles of clomid, 1 natural mc 1 failed ICSI and now this cycle. My endo will just get worse over time and I have to move on with my life. But how do I do that when all I have ever wanted is a family of my own and that's the one thing I can't have? I feel so empty.
Posted by: Kelly | October 30, 2014 at 02:57 AM
Kelly-
I'm sending so much love, luck and prayers your way.
Posted by: Anita | October 28, 2014 at 03:08 PM
Everyone's stories are so heartbreaking. I have so much respect and admiration for everyone surviving on the Island. Kerry--amazing. I can't imagine going through all the losses you have endured, but am so happy and hopeful to hear you're about to hit that 6 week mark! I'm sure it's anxiety provoking but I believe in your baby girl. Girls are tough! That's all we can do is hope and believe. I wish you all the luck in the world and thanks for sharing your story. Melissa--the lining saga continues it seems. It is hard not to be on the defense--I go there too. I sometimes tried to pretend something is not going to work or that It doesn't really matter but then I started being honest with myself. Who am I kidding? All of this feels very intense and matters more than anything! I remember at times feeling like a jerk for feeling hopeful, like I was a fool or something. But I'm not. None of us are foolish for being hopeful. It's true strength to get knocked down and believe again, because we are fighting for our babies here. And as I always say, some how, some way, we will find them. Anita--I remember your beta roulette and am so sorry. What a cruel tease. It seems so ridiculously unfair. I wish it worked out differently for you and hopefully something will soon. No one deserves what happens on IF Island. And the insurance thing is terrible. Noah and I had no coverage at all for IVF and I remember having to go on meds for two more days during IVF round 1 and I went to the pharmacy crying because my follicles weren't growing and I picked up a box of menopur and some other crap and it was like $2,600! Talk about making a bad situation ten times worse! Hopefully one day infertility will be recognized as the medical condition that it is rather than be in the same category of "elective" medicine like liposuction. Hi Lisa--I'm with ya on the quiet hope. It's hard to maintain. Sometimes I think about the bigger picture or the future of all of it. Knowing I will be a mom, but not knowing how made it feel more about trying different things and solving the puzzle which I guess made me more hopeful. But I am often a glass half empty kinda gal too. Especially when the glass is half empty! I wish you lots of luck on your journey.Oh Kelly--I'm so sorry for your losses and hope so badly this is it for you! I wish these procedures just work for people who deserve it! That video of me crying actually went on for a while and part of what Noah said is that if there's a faint line, we hold on by a thread. All you can do is pour all the love and hope and wishes you can towards your belly right now and hang on. I hope tomorrow brings good news. Please keep us posted.
Posted by: Don't Count Your Eggs | October 28, 2014 at 10:05 AM
I've been reading your blog for a while now, on and off throughout my last two ICSI cycles. My first I had 16 eggs collected, only 5 mature and they weren't the best quality. In this cycle I lost my mum to cancer, my step dad to an overdose (he couldn't deal with not having mum) yet I still managed to be hopeful. I thought that cycle would be my silver lining. It wasn't and I was totally devastated. We started our second and last (no funds to carry on) cycle in September. My consultant lowered my menopur to try and have less eggs, but better quality. We got 7 eggs, 5 mature and only 1 made it to blasto stage but they said it was good quality. I had a dreadful tww and convinced myself it hadn't worked. I got a very faint bfp yesterday. I am testing again tomorrow as requested by my clinic, but I am dreading it. I am dreading it was false and nothing is actually there. But your post today has given me so much hope. I have always been a hopeful person and this process seems to have kicked the crap out of me. But I want to thank you for giving me so of that much needed hope I have been missing. Congratulations on Momo x x
Posted by: Kelly | October 28, 2014 at 05:16 AM
I love your comment about the difference between excited and hopeful. For me, hope is a quieter feeling than excited. I think hope is also a little more fleeting, but that may be my natural "glass half empty" disposition. As always, thanks for being so transparent, Maya.
Posted by: Lisa | October 27, 2014 at 06:43 PM
Maya,
I had my beta test for the 5th IVF on 19th September, and I had a beta of 22. As I had been reading your blog, I was totally unfazed by the low numbers and was actually happy. After all it was first time I had a positive beta. As I wrote to you earlier, it increased to 76, and my happiness was beyond words. 3rd beta and it was only a 106 or so, and I was told that this is not good news. After a few days it dropped down to 18, and it was described as a chemical pregnancy. These last few days I was a mess. I felt like God does has a super cruel sense of humor! I spent my nights on the couch, miserable and sleepless and totally sick the next day.
I wish you smooth sailing. Love to the 3 of you.
At Lisa- I have no idea what is the deal with the insurance. We were covered but my heart goes out for people who are not covered. Why would anyone choose to be infertile? why don't the regulators do something about it. I'm a scientist but I can still not understand why on earth are those meds so expensive! I question God several times as to why we have to suffer through this when we long for kids with all out hearts, whereas drug-addicts get kids easily and can not keep them. There are famished kids on the streets in parts of the world, kids born where no one ever wanted them. I'm just feeling so mad at the gross injustice!
Posted by: Anita | October 27, 2014 at 06:27 PM
Oh Maya - you got it oh so right again! Over time on this terrible island, I have learned to play the defensive mind games all too well where I expect the worst, because I keep feeling like it will somehow protect me. But time and time again, even when I tell myself to "expect" bad news, I am completely crushed and devastated when I actually hear it. It does not soften the blow at all. While I certainly give each cycle my all (physically, mentally, and emotionally) I guess I need to work on retraining my overall mindset so I can hope for the best for as long as I possibly can. It's certainly going to be easier said than done...
To Caroline-as Maya mentioned in her response, I am basically in the EXACT same boat as you - on our third attempt at FET and currently we are doing a protocol from Yale to try and bulk up my lining (which has been persistently thin) all while my estrogen levels have also shot up into the 5000's. It is so very frustrating and disheartening and if you ever want to chat/vent, etc, I'm here :)
Sending lots of love to you Maya and to Momo who sounds quite snuggly in there.. XOXO
Posted by: Melissa | October 27, 2014 at 05:45 PM
I have had four miscarriages (one natural twins, two natural singles, and one IVF PGD normal 3day embryo--that one really sucked, to be blunt, as there was a 5% chance of miscarrying it, but we managed to do it). We then did several rounds with no normal embryos to transfer, and this last round in August was to be our last before moving on to donor eggs. Well, we got 1 normal...A girl. And even though I could only imagine bad outcomes, because it was all I'd ever known, I tested positive after a FET last month. I go in Friday for my 6w ultrasound. I so relate to this post and this video--when you ask Noah how you keep ending up on the losing end...god, I have been there. It is so, so, SO hard. But I agree with you that as hard as it is, it helps to try to be positive. This process robs us all of so much joy, but it should never rob us of the hope and the belief that if we search every avenue, we will get the baby we are meant to have. My love to you, Momo, Noah, and all my fellow islanders.
Posted by: Kerry | October 27, 2014 at 05:22 PM
I hear ya Lisa. It's so hard. Being excited is different from being hopeful, I've found. Excitement, I've found, revs me up in anticipation--that's when for me the fall feels worse. I think of hope as being open and staying with the facts. My facts on beta 23 day was that I had a beta that was better than 0 but not 50. That was it. I had to be open to whatever happened and be patient until I tool my second beta two days later. It was torture! It's always torture. But all I could do was be hopeful and think about the embryo getting stronger and bigger--so that's what I did. All you can do is hold out to tomorrow. AHHHH!!! I am crossing everything for you! And you are so right about insurance. Don't get me started...ugh. Hi Caroline--that holding pattern is so rough. Another gal who comments some times has been dealing with the frustrations of an unresponsive lining. So hard! I remember doing Lupron for weeks and then being told it had the opposite effect--I made more follicles on lupron than I did on menopur, go figure, and my cycle was cancelled. Holding pattern--waste of time and effort and meds and all that. It feels terrible but is part of Island life I suppose. I hope things turn around for you and wish you luck on your eventual FET!
Posted by: Don't Count Your Eggs | October 27, 2014 at 04:17 PM
Your posts are always so amazingly spot on with things I'm feeling or need to hear. Currently in a holding pattern of Lupron/estrogen trying to bulk up thin lining (but with sky high estrogen levels of 5,000) to do an FET. This is all after the three surgeries I've had this summer and the lovely waiting game of healing and CD1. It's always a holding pattern on IF island isn't it?
Positive thiughts for an easier pregnancy for you!
Posted by: Caroline | October 27, 2014 at 01:57 PM
I am afraid I'm getting to that point, where I just expect a "negative" beta so when it happens I don't feel as horrible. It's just so hard for me to be excited about any symptoms b/c I know it's probably the progesterone or estrogen supplementation that is probably giving me sore boobs. My husband seems to be optimistic and positive, but then again he holds a lot inside and it's hard to drag anything out of him. He is realistic though that we may have to move onto IVF. The thought of IVF angers me so much though. It's just not fair and the fact that it isn't covered by insurance infuriates me. My reproductive system isn't working right and it's not covered by insurance...but if I had a faulty thyroid, that would be covered by insurance and the list goes on. Beta #4 tomorrow...let's just say I have already booked the "What's next" appointment with the doctor, but let's hope I have to cancel. *sigh*
Posted by: Lisa | October 27, 2014 at 12:30 PM