Limitless sorrow

I can’t believe I made it to work today. I barely slept last night. I went for a walk at 3 in the morning, to try to relax myself. I stared at the blinking light on my closed laptop and thought of it as a “little star” pulsating in the dark. I had to keep repeating mantras to myself, looking at the light and saying, “This is all that matters.” I felt such sadness. Frustration. Anger. I am feeling different down there, am feeling menstrual-like. My breasts are barely sore. I’m not peeing nearly as much. Not nauseated. Etc. Last night, I pushed all of my pregnancy books off the nightstand onto the floor. I didn’t think there was any way I could make it here to the nursing center today, but when morning came, I knew that I had to come, Rocky Balboa eyes and all. I have only 1 sick day left (I had to use up a large chunk of sick days for FMLA leave to Atlanta) and I might need that sick day very soon for something worse than this. As if it can be worse than this. But yes, it can, it always can.

I came in and my supervisor—the one who tried to get the head person of this place to let me go home for Xmas (and head person flatly denied)—followed me down the hallway and discretely motioned for us to go outside in the courtyard, but of course the door was locked. So we talked in the hallway, and I sobbed, tons of co-workers walking by. Oh well. She cried, too, and hugged me, reassured me. It was very sweet. I told her I was going to try to pull it together.

I did. I didn’t cry much today except for at 5, when my last co-worker finally left, and I could close and lock this door and sob.

I had to do paperwork with a family member this afternoon, and because I’ve met him before, I just knew he was the kind of guy who would look at my belly and ask me if i was pregnant. I tried to beg off the task, but I couldn’t explain why. I had to do it. And he did exactly what I thought he would do. No matter how much I tried to suck it in, he said, “Are you pregnant? You’ve been busy since you got married, eh?”

“No, no,” I stammered, then was speechless.

I don’t understand people. Like the woman from the business office who asked me last week if I was pregnant, and when I told her it was a sensitive topic and I did not want to talk about it, she whispered: “Did you take a pregnancy test? Want me to say a prayer for you?” And then, holding out the cross around her neck: “Do you believe in Him?”

I think it is because the gestational sac is measuring a bit over 9 weeks, I think that’s why my belly is so big that people are noticing. It’s a great perk of this particular situation.

My mom keeps writing to me, wanting to hear news that will make her feel better, but I have to be realistic. I have to prepare for a D & C, because my body does not let go of pregnancies. It does not spot, or cramp up, or ever, ever let go.

I currently have an OB I do not like, and there is no way in hell I would trust him to perform a D & C. I don’t remember if I wrote about him or  not. He was the one who, when looking up at the screen that was supposed to show my uterus, and a cable channel came on instead, a large African-American woman on the screen, said, “Your uterus is a giant black girl!” He is also the one who was chomping on a sandwich during one of our consults. And the one said, “You’ve never met the people in Atlanta? What if they have horns?” And the one who called down the hallway after me, in relation to my upcoming procedure in Atlanta: “Good luck! Hope you believe in God, or something.”

So I need to establish care with a new OB. I set up an appointment for this Thursday at 6 p.m. with a doctor affiliated with North Shore LIJ who has a reputation for being a great surgeon, and a nice person.

DH thinks I am jumping the gun, thinking of a D & C already, but I know that I have to start thinking about it and planning for it. At my appointment, I’m sure the new OB will do an ultrasound. And from there I guess I’ll know if I even need to go back to the radiologist on Monday.

I don’t know what’s happening to me. I feel like I am in shock. I dissociate, and then I get very distant from everyone and everything. And then I sob. I guess I know exactly what is happening to me. It has happened 5 times before.

I am glad that some of you are holding out hope for me, because I have no capacity left. I don’t know how to hope at this point. I did hope, I did, I did! I welcomed this with my arms and my heart wide, wide open! Even after the scary 80 bpm heart-rate, I settled down after one day of anxiousness and went back to hoping!

What terrifies me is that this is not the end….If this pregnancy goes bad, it will most likely be due to chromosomal abnormalities having to do with the donor’s eggs. And I have 2 more frozen embryos that the guarantee program says I will have to transfer before selecting another donor. I never thought in a million years that the guarantee program would be locking me into having more multiple miscarriages. I can’t think about that. But at the same time, I’m sure that’s what I’ve signed onto. For so many women, this works out fine, but for me, of course for me, who has already had 5 losses, I choose a donor that will give me 3 more. It’s too cruel, too much to bear.

I know nothing has come to pass. But I also know what my life has been, and what it is now, and what I can expect in the future. It is truly limitless. I thought I’d found an out. I’m tired of lessons—I am ready to heal and move on. I am tired of being strong and just barely surviving—I am ready to be happy and rejoin the living. But it is truly limitless, the sorrow. Limitless.

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22 Comments

  1. Please talk to Dr. S about getting to use a different donor. When you are ready, of course. This seems to be an exceptional circumstance. Losing a baby is different from donor eggs is different from not getting pregnant.

    I cannot imagine the trauma you are going through and I don’t know what I can say except, I am so deeply sorry.

    Reply
  2. p

     /  October 8, 2013

    Man. I just want you to know that you are not alone. That while life sometimes feels like it has singled us out to send us more loss and misery than others, just know that you have a band of sisters out here who know what you are going through. Each pain is so unique and individual. But in general, I think you know that we know too. The wretched losses that words cannot describe. I’m only 3 miscarriages in, so you trump me already. But it doesn’t take but one to know the bitter pill. So, if there is any consolation in ANY of this, just know, when you are staring at the blinking light of your computer at 3am, that we are there. We are with you, whatever comes.

    Reply
    • Wow. That is powerful. So powerful. I can’t thank you enough for that. I will think of you and the band of sisters when it is quiet and dark and I cannot sleep. And when I go to my next doctor’s appointment. And through whatever (undoubtedly unexpected) thing comes next.

      Reply
  3. Sarah

     /  October 9, 2013

    I hope I’m not overstepping my bounds here, but I don’t remember reading anything re: immune testing on here. If you have the energy, it might be something to consider. After my most recent loss, it was recommended I have the testing done and they found that my natural killer cells “went through the roof” when a medium was added. A low does steroid & intralipids was recommend for my next transfer. I ended up switching to a Dr. after that to someone who does not believe in immune testing, but tells me that there is no harm in trying the intralipids- esp. since the cost is soo low compared to everything else- I believe it will be around $200. Deepest apologies if this was too much. Know that we are all pulling for you, and holding out hope on your behalf!!

    Reply
    • I’ve asked Dr. Shapiro for his opinion on the immune testing, thank you for mentioning it, it’s the one area I have not explored (and had hoped I wouldn’t have to). I’ll probably get to talk to him about it on Fri. The thing is I had 3 embryos at CCRM tested for chromosomal abnormalities, after my IVF, and they were all abnormal. So I really do think my previous losses had to do with chromosomes. Did you have chromosomally abnormal embryos (did you have them tested)?

      Reply
      • Sarah

         /  October 10, 2013

        I did not have them tested. My original Dr. actually advised against it due to the harm it can cause embryo’s, and his thought was that if it made it to a blast of good quality that chances were good that it was normal. The difference in success rates at the clinic did not support the testing. After so many painful losses & excruciating heartache, I think you owe it to yourself to explore the immune testing- as the solution to it so easy relative to everything else we put ourselves through. The person that brought this to my attention was Dr. Sher. He offers free skype consults, and I bet he could answer a lot of questions you might have. No obligation to him at all, and he is very straight forward. I personally liked him A LOT, but I found another Dr. whom I really connected with that offered me a guarantee plan. As you know, a guarantee plan is nearly impossible to pass up given our history. I have a feeling if you talked to Dr. Sher, he would be very confident that was the issue, regardless of your chromosomally abnormal embryos- as in my experience each IVF cycle is so different from the next. Again, I truly apologize if I’ve said too much. I assure you it comes from a genuine and hopeful place. You will get there!! Be good to yourself in the meantime. You deserve it.

        Reply
  4. Mrs. McIrish

     /  October 9, 2013

    My heart breaks for you as I know your pain. I’ve had two donor egg failures(one BFN and one chemical) and this was after 4 OE IVF failures. I have a consult with your doctor in a couple of weeks. That’s how I stumbled across your blog. Have you had any immunological workups done?? I don’t think it is an abnormal egg– your body might be attacking the embryo as well as all your earlier babies. I’ve seen this happen to a lot of women. Come visit the boards on “Looking to be a mom thru DE ” and you’ll find them. I wish it wasn’t so hard for some of us. Big hugs.

    Reply
    • But the thing is I had 3 embryos tested after IVF at CCRM, and they were all chromosomally abnormal. Have you had the immunological workup done? I got all of the tests given at the ODWU at CCRM, but I’m not sure what all they tested. I’m going to ask Dr. Shapiro his opinion on this, thanks for the input.

      Reply
  5. Tess

     /  October 9, 2013

    I am so sorry. And I second p — you are not alone & we are thinking about you.

    Reply
  6. I check your blog regularly because I am really rooting for you. I am very sorry this happened. I understand how you feel. I have had one miscarriage and it was just one too many since then I have paid for 2 PGDs to because it is just to much for me to bear having another miscarriage. Maybe that is something you can consider…It is costly but maybe from this donor can can help the process move faster instead of having to go through another transfer with the donor. You should definitley switch OBs you need people on your side not insensitivity at this time. Me being a black woman I just find it so so tacky what he said to you. Keep your head up and you will be in my prayers.

    Reply
    • I know—that OB is completely inappropriate, to say the least. I hadn’t thought of that—testing the embryos. But I think then they would need to thaw then refreeze them–then thaw them again. Seems like a lot of freezing and thawing for them to go through. But thank you for the input.

      Reply
  7. Kali

     /  October 9, 2013

    I stumbled on your blog and feel like you are talking to me directly. I have also been on this journey since Spring 2011. I have had three miscarriages, one DE. With that shared donor, ALL THREE couples who used her, got pregnant and miscarried at the same time–9 weeks. I have FIVE high-quality embryos left from her. My guarantee program also requires me to use them before moving on, but I fought it, as it is clear her eggs have problems, and the genetic counselor told me testing may not uncover it, given that the fetuses tested turned up normal (though 46XX so inconclusive). I told my clinic it was unreasonable to ask me to risk miscarriage when I’d come to donor egg to solve my fertility problems, not take on another woman’s, after much fighting and emotional anguish, they agreed (because I think they knew I was ready to pull out my money) and I chose another donor. A “proven” donor in that she’s had a child, and recently.

    But this time, unlike every other time, my lining did not build up. It became a “Freeze All” cycle. From my share of this last donor’s eggs (8 eggs, 7 mature), I have ONE blast frozen, which will be transferred as an FET, so I get to do all of the drugs again. I am almost relieved there is only one, so I am not stuck with this donor if it doesn’t work. I DID pray this time, to God, to have the cycle cancelled rather than give me another failed cycle, and please God, no more miscarriages (I’ve had two with my own eggs, now one with DE).

    I am planning on moving from my clinic to RBA if this next round doesn’t work.

    I subscribed today because I want to hear about your next ultrasound. I am holding out hope for you even though I have so little for myself.

    Thank you for giving voice to the anguish I’ve felt since mid-2011. I am sending my BFF your piece on how to listen–it is the FIRST piece I’ve seen in the vast blogosphere that describes how people unknowingly make your grief all about THEM and their discomfort, though their intent is to want to help, and provides advice on how to proceed compassion. I hope it helps to heal the rift in our relationship.

    I am waiting for news to hit my email. I pray that it is the good news we both want.

    Reply
    • I replied to your other comment, but wanted to reply to this, too—again, words fail me, that they would consider making you go forward with that donor. You are a fighter and you really advocated for yourself like a pro, even though I’m sure it was such anguish for you. I’m so glad you like the How to Listen thing I wrote! So much of that is from my training and 9 months of experience working on a suicide crisis hotline. It seems that no matter what crisis people are going through, outsiders—friends, family, acquaintances—follow pretty much the same faulty pattern in trying to “help.” Please keep me posted on how she responds. I will be so thrilled if it helps mend the rift.

      Reply
  8. LH

     /  October 9, 2013

    I wish I could give you a huge hug. I’m so sorry you are going through this.

    Reply
  9. I am so sorry. I will hold hope for you that this pregnancy is the one. But if not, it does not mean there is something wrong with all of this donors eggs. Even young healthy women don’t have 100% perfect eggs when you remove the natural selection and give them stims. I am so sorry that you are dealing with this!

    Reply
  10. Oh, friend. I’m so so sorry you’re having to feel all of this. I’ll say the easy thing first. So glad you got rid of that doctor. For the rest of it, there are no words. I’m still holding on to that tiny sliver of hope, though, even if you can’t. I think that’s what we’re here for. And, listen, one more thing. Please please please don’t assume that the other two embryos from the donor are necessarily a bust. One miscarriage due to chromosomal abnormalities is so normal, isn’t it? If this is what this is, this could have easily been her “one.” It would make you incredibly unlucky. But it does not doom you to more. You loved her for you guys, friend. Those two could be your perfect fit babies.

    Reply
    • Yes, one mc is normal. It’s insane to think that I could have taken on her ‘one,’ but I really could have. As nuts as it is to try to accept, it actually might be the story I am dealing with, the truth of the matter. I’ll look into what could be wrong with me (as if I could be scrutinized any more!), but maybe it is as simple as that. Bad luck. Maybe twins are in my future. I can’t help but start to think like that. Maybe it is too soon. Or maybe it is healthy. Whatever it is, it is happening in my brain, a picture of twins. God. What a whirlwind. And you’re right—hope IS what you guys are there for! It’s a beautiful thing, as are you.

      Reply
  11. My heart is breaking for you. I wish someone would limit your sorrow. Just stop it in its tracks xx

    Reply

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