The Things She Carried

[inspired by Tim O’Brien’s novel, The Things They Carried]

She carried 758 needles, 170 suppositories of the vaginal variety, and hundreds of blood draws—she was told she had good veins, like that was some kind of prize to win. She was weirdly proud of her awesome veins, because in this game of carrying and dropping, losing and winning, there’s not much else to be proud of.

She carried 63 ultrasounds, some of them a routine check for follicles, some looking in vain for beating hearts, some checking to make sure “the products of conception” no longer existed inside of her.

She carried names of drugs she could barely pronounce—Menopur, Follistim, Ovidrel, Ganirelix, Intralipids, Lovenox, Prednisone.

She carried four IUIs, three IVFs, 66 follicles, 33 eggs and 20 embryos. Some of these embryos were placed back inside of her, and some never grew beyond a handful of cells. All were loved.

She carried lesions on her ovaries, cervix, uterus and bladder. She carried a blood clotting disorder called antiphospholipid antibody syndrome. She carried overactive natural killer cells, which weren’t really killing much except teeny-tiny embryos too little to fight for themselves.

She carried one laparoscopy attempt. One actual laparoscopy. Three egg retrievals. Two transfers. Two D & Cs.

She carried 1,938 miles of travel—from the house to the fertility clinic; from the clinic to work; from Philadelphia to Manhattan for surgery; from Philadelphia to Woodbury to visit what she hoped would be a miracle doctor; from Philadelphia to Woodstock to spend the day with a fertility visionary. She carried $726 in parking garage fees, and even one parking garage accident.

She carried Please Gods and plea bargains. She carried what-ifs and what-will-I-do-nows.

She carried special diets—no gluten, no dairy, no sugar, no air.

She carried the love of a good man, but she carried it clumsily and sometimes carelessly. She lashed out. She yelled. “Why can’t you carry any of this for me?” she wanted to know. There was no good answer to that question—he knew it and she knew it, and at the end of the day she was lucky to still be holding his heart.

She carried the memory of lost babies—three at last count. First was Gabriel. She lost him on the bathroom floor at work, and by the time she got to the hospital she was so bloody it looked like she was starring in a Carrie remake. Then there was Anna, who was confirmed genetically normal and therefore should have lived, but didn’t. Anna, who said au revoir to the world on Christmas day, but who would never open a single present. Finally, there was Baby B, a loss too new to even get a name.

She carried a persistence that even she admitted was insane. She carried advice from relatives, friends, acquaintances, the checkout lady at Target, wondering why she was doing this to herself, why she didn’t just give up. Stop this nonsense. Be happy for what you have. Halt. Cease and desist before you ruin yourself, your job, your marriage. And she did want to stop, she did. But she needed to try one last time. One more needle, one more blood draw, one more doctor. One more.

And now.

Now she carries a baby inside of her, a little girl, no bigger than a winter squash. She feels her kicks, taps and nudges, and they feel like hope. She still carries the what-ifs—so many what-ifs—but now she carries something else as well—trust. Trust that this is the soul she is meant to meet. She sings to her baby every night, hands on her belly, heart wide open as a summer sky: ‘twas grace that brought you safe thus far, and grace will lead you home.

Crankyville, Population: 1

I hate the two-week wait. Seriously. Waiting can shove it.

Of course, my wait is longer than two weeks because my clinic schedules pregnancy tests like a million days after transfer. At my old clinic, I had to wait 9 days for a beta. Not bad. I don’t remember feeling particularly tortured during that time. But now? Forget it. This wait feels endless.

I’m not going to test early. I do not want a seat on that roller coaster. I’ve seen too many negative pregnancy tests in my time. I don’t ever want to look at one, ever again. The beta shall remain the Final And Only Word on the matter.

I promised myself I wouldn’t start analyzing symptoms. For those of you who don’t know, everyone who does IVF or a frozen embryo transfer takes progesterone. Fun fact about progesterone: it mimics pregnancy symptoms. So there’s really no way to tell if you’re feeling pregnancy or progesterone. Which means analyzing symptoms is useless. However, a few days ago I started feeling nauseous. I fooled myself into thinking this was a legit sign. Since I wasn’t feeling it up to that point, it couldn’t be the progesterone, right?

Yeah, well, it’s not the progesterone, but it is something that has nothing to do with a pregnancy. I realized this morning that I started feeling nauseous at the exact same time I switched out my calcium brand. And calcium often makes me super sick to my stomach. So yeah, boo. I’m annoyed that I let myself fall into that trap.

There’s been good news in the last two weeks, though: one of our embryos made it to freeze! Huzzah! Anyone who knows my history knows that a cycle yielding 3 decent-quality embryos to transfer and one to freeze is HUGE for us. We will never have a freezer full of blastocysts like some of you lucky bloggers out there, but I am so incredibly grateful for one. We also have an embryo leftover from our first cycle, which means we have two frozen embryos total, all ready for another transfer if needed. But I really hope we don’t need it. I just heard from Braverman’s office that we have to get the full panel of immune testing done again before we can start another transfer. Those tests take six weeks to come back. This means we likely wouldn’t be able to do another transfer until January as our clinic closes for several weeks in December. Mother effer.

I’m just cranktastic today, there’s no getting around it. I’m tired of this wait. And sick of infertility in general. Like, I am so over it. I’m having a grand old time throwing a pity party for myself. I’d invite you guys, but you don’t want to come. It would probably be the lamest party you ever attended.

All That’s Left To Do Is Let Go

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For the past two weeks, I’ve been preparing my body with blood thinners, steroids and intralipids. There is a constellation of hematomas on my abdomen, like a map of our progress, a connect-the-dots path to our baby. Right before each shot, Tim and I hug. Then we send up a silent prayer to that spirit we know we are meant to meet. I don’t know what Tim says, but mine goes a little something like this: I love you. I’m open to receive you. Please come home.

In three days, all nine of our embryos will be defrosted. They will grow and divide in their mysterious way, and if all goes well, we’ll transfer two blastocysts on Tuesday.

Five months of preparation have come down to this one day. The trips to New York, the surgery, the immune testing, the supplements, the new doctors, the shots, the procedures, the blood work, the renewed hope—all lead to Tuesday.

Am I ready for it?

Yes.

If it works, I feel prepared to navigate the challenges of pregnancy after infertility and loss. I’m not saying it will be easy, but I believe I can do it without losing my sanity. If it doesn’t work, well, of course I’ll be crushed, but I will be ok. This is one thing I now know without a doubt: I will always be ok. I will hurt, sometimes so much that I won’t want to open my eyes in the morning, but I will keep going. I will heal.

And so, one way or another, this epic quest is finally coming to a head. I’ve searched far and wide to find the answers I needed. I’ve prepped my body. I’ve prepped my mind. I truly believe I’m giving this baby the best possible chance to make its way to us.

All that’s left to do is let go. To let what is meant to be, be. There is so much sweetness in that, and so much peace.

I am ready.

A Long Overdue Update: IVF # 3, Part 1

Hey, dudes. It’s been busy ’round these parts. Since my Dr. Braverman update, I went on vacation, work turned into Crazytown and I lost my friend to cancer. And, oh yeah, I did a stim cycle. Retrieval was almost two weeks ago at this point.

I’ve been meaning to update you guys on the cycle for ages, so here’s the breakdown.

What we did differently this time vs. last time

I was on a much lower dose of stims. You might recall that for my last IVF I was on the atomic bomb dosage of meds, so I was initially very worried about this decrease.

The doctor added Clomid to the Menopur and Follistim cocktail.

He also threw human growth hormone into the mix. (Yep, just like A-Rod.)

I did a double trigger. So instead of just HCG, I also injected myself with Lupron as well at trigger time.

I took my Dr. Braverman supplements throughout the cycle.

I worked with a fertility coach and she helped me change my entire headspace. Although I had a few relapses, I made it through the cycle with minimal anxiety. I’ll try to write more about the work we’re doing together soon. She’s awesome.

Instead of doing a fresh transfer, we froze everything on day 1. The embryos will later be thawed and grow to day 3 or 5 before being transferred.

How it turned out

I stimmed relatively fast — only 8.5 days

They retrieved 11 eggs. My first cycle they retrieved 10, and my second cycle they retrieved 8.

9 out of the 11 fertilized with traditional IVF! My first cycle 6 fertilized via traditional IVF, and my second cycle only 3 fertilized using ICSI (insert sad face here). So, HOT DAMN, 9 is pretty amazing for my bod. Dr. Braverman promised me that my embryos would be better quality now that my endometriosis is no longer hanging around, and I’m hoping the high fertilization rate means he’s right.

I believe

Since the embryos were frozen so early, we’ll have to wait until they thaw and grow to really know if they’re good quality. I believe in them, though. And I wasn’t sure I’d ever be able to say this, but: I’m beginning to believe in my body again, too.

 

Immune Testing Results & Consult With Dr. Braverman

You guys, have I told you lately that I love you? For real. Your comments on my last post were just beyond. Not to mention my friends in real life that reached out to me as well. Thank you everyone. A million times over.

Last Tuesday I had my Skype consult with Dr. Braverman and found out the results of my immune testing. Basically, all the findings were consistent with endometriosis. This is pretty good news overall – there’s nothing else more sinister lurking on the sidelines.

Warning: I’m about to get very long-winded and detailed. I want to share as much as possible in case I can help anyone on the interwebs searching for information.

What the testing found:

I am genetically predisposed to endometriosis (duh at this point), Grave’s disease, Hashimoto’s thyroiditis, Antiphospholipid Syndrome (this one is no surprise either), Celiac, psoriasis and psoriatic arthritis

This does not mean I have any of these things–it just means I have the genes that would allow them to develop. Or something. I’m disclaimering right now that I barely understand all of this immune biz, so most of the explanations in this post will likely be at least semi-bogus.

Other things that are awry in my immune system:

My white blood cell counts are a little low. This is consistent with endometriosis, but I forget why.

My anti-cardiolipins are still testing as highly positive.

My natural killer cells and CD8+ T-cell levels are through the roof. Both are in the 98th percentile. Meaning, of all of Dr. Braverman’s patients, 2% of them have higher natural killer cells and CD8+T-cells than me. Whoa.

So why is this significant? Basically, both of these types of cells are totally normal. Everyone has them in their bodies. They fight off cancer, viruses and the like. But if they are too active, they see an embryo as a foreign body and kick it out.

To sum it up: I have endometriosis. This negatively impacts egg quality for a variety of reasons, two of the main ones being that it creates inflammation in the reproductive organs and also messes up the mitochondria in my eggs. This makes it really hard to produce eggs that actually turn into babies. Then, on the off chance that I do make a healthy embryo, the anticardiolipins, natural killer cells and CD8+T-cells kill it. On many levels, my reproductive system is – no, was – screwed! Was. It’s a whole new world now.

What Dr. Braverman suggests:

Luckily, everything that he found is straightforward to treat! Huzzah.

The first step is to remove the endometriosis, which I have already done.

Next, we wait two cycles in order for the inflammation to die down. I’m a little less than halfway through this.

Then he recommends another IVF cycle. As some of you know, I have an embryo still frozen at my old clinic. He said it’s not impossible, but very unlikely given what we know, that this embryo is genetically normal. So he recommended holding off on transferring that one for now.

After the IVF cycle we’ll freeze all embryos, ideally on day five. Apparently, the drugs from the IVF will make my immune response worse, so no fresh transfers for me. He then wants to do something called mitochondrial testing on the embryos. This is apparently a brand-new test. Instead of genetically screening the embryos, it tests only the mitochondria, which is apparently the most important factor for endometriosis patients. I’m not sure if we’ll do this yet. I need to look into it. He does not recommend traditional genetic screening.

Finally, we’ll do a frozen transfer, using Dr. Braverman’s immune protocol.

The immune protocol will include:

Lovenox (a blood thinner)

Steroids (reduces inflammation)

Intralipid IV infusions (this is, like, straight-up fat, I think. I don’t even remember what it does, but it sounds like some mad scientist hootenanny. Sign me up!)

All of this will be done at our new clinic, with Dr. Braverman consulting on the frozen transfer. The new clinic is about an hour away from us, which is a major downer, but our old clinic won’t work with outside doctors, and this one does.

Other recommendations from Braverman for patients with endometriosis:

Cut out gluten (I’ve been gluten free for a year or two now, so we’re good there.)

Cut out dairy (I’ve also been dairy free for a while. Dr. B. says a little dairy every so often is fine. It’s not as much of an issue as gluten.)

Eat organic

Take a crapload of supplements.

Here’s the supplement list, if you’re interested:

Pycnogenol and Resveratrol (antioxidants that reduce oxidative stress and lower reactive oxygen species in the follicle, improving egg quality)

Melatonin (an antioxidant — it has been shown in the literature to increase the number of FSH receptors on the follicles in patients with endometriosis. I may not be able to stick with this one, btw, as it appears to be exacerbating my asthma)

VSL#3 probiotics (to lower the level of inflammation by increasing the production of IL10 in the blood. If anyone knows what IL10 is, let me know.)

Fish oil with Omega 3 (didn’t get an explanation for this)

Mitochondrial optimizer (helps to improve mitochondrial function in the egg, which increases the competence of the nucleus. This leads to higher euploid rates and better embryo performance)

Vitamin D3 (to help decrease natural killer cell activity)

Greens formula (didn’t get an explanation for this)

General notes:

He said that, after surgery, I have about a one-year window until the endometriosis comes back.

His official word is that one cup of coffee a day and drinking socially is fine. He’s firmly in the everything-in-moderation camp. So, guess what guys? If I want a friggen glass of wine, I’m having a friggen glass of wine. No more guilt!

He called me young! Well, kinda. When I asked him if I should be taking DHEA, he was all, “That only works for older women, not women who have diminished ovarian reserve for other reasons.” Consider my life made. It’s not often that 38 is classified as a younger woman in the fertility world. I’m taking that and running with it.

Whew! Are you still awake? I am, but only barely. If you’ve read this far, you are a rock star.

And with that, I’m signing off. Must go to bed. Tomorrow we meet the doctor at our new clinic for the first time. I hope we like him (and the clinic) because we really don’t have much choice in the matter.

‘Night, dudes. Sleep tight.

The View From Down Here

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A quick peek inside my head.

Well, here I am. A little less than two weeks post surgery. I’m feeling much better physically.

But mentally, yikes. If you could see my thoughts right now, you’d be like, whoa. They’d be all black clouds and evil robots and scary vintage dolls with those flip-lid eyes and I don’t even know what else.

Things were ok for a while. Initially after the surgery I felt relief. It’s over, hooray! I have endometriosis, hooray! It may seem strange to feel relieved upon finding out you have an incurable disease, but I was just glad that we finally had some answers. So many things were explained: the spotting before my period (endometriosis on my cervix), frequent urination (endometriosis on my bladder), the pain in my lower right side that doctors had been dismissing for years (endometriosis on my ovary) and my crap-quality eggs (endometriosis everywhere). And even better, all of it was removed! (P.S. the surgeon did remove the endo on my ovary – in my anesthesia-addled state I misheard the him.) For the moment at least, I am endometriosis free!

I was also feeling happy with myself. Happy that I kept searching and digging until I finally got some answers. That I didn’t give up. That I trusted my gut and listened to Dr. Braverman when he told me to get surgery after a ten minute phone consult. I was like, well, this is totally crazy, but I think he’s right so I’m going for it.

And he was right. We both were.

So yeah, I was feeling pretty good for a few days, despite the pain.

But then, I don’t even know what happened.

Maybe it was the fact that recovery was worse than I’d expected.

Maybe it’s because, as relieved as I was, it started sinking in that I have an incurable disease. Yes, the endometriosis is gone, but it usually comes back at some point.

Maybe it’s because, despite my very best efforts, I can’t seem to get my stupid teeth situation under control. Like, I can’t remember a time when my teeth didn’t hurt. One gets fixed and another one gets jacked up. It’s never ending.

Maybe it’s because we’ve been going at this babymaking crap for over two years.

Maybe it’s because I’m staring down the barrel of our last IVF. One final chance and that’s it.

Maybe it’s because after all of our talk of adoption, I don’t know if that’s truly going to end up being a valid option for us. We don’t have the cash up front right now to make it happen, so we’d have to either borrow money, clear out our dire-emergency-only funds, save for years or a combination of the three. Not to mention the fact that this fertility journey has already taken a toll on my relationship with Tim. We’re not headed to Divorce City or anything like that, but I think we both agree that we’ve seen happier days. What would another two or so years going through the adoption process do to us? Yes, I want another child more than almost anything, but not at the cost of my marriage. I’m not saying adoption is off the table, but it’s certainly going to require further discussion and exploration.

So when all is said and done, we may end up without another child. Which means we would have spent years on this journey with nothing to show for it — nothing good anyway. Two dead babies. A sharps container full of needles. A strained marriage.  Not to mention that I’m now the kind of person who rolls my eyes when I see a pregnancy announcement — so essentially I’ve become someone who begrudges others their happiness. And I’m sure I’m a worse parent to Lettie than I would have been if I didn’t go through any of this stuff. How many times have I been obsessing about my fertility, or lack thereof, instead of being in the present moment with the amazing child that I already have? How many times? Just thinking about it makes me want to cry my eyes out. She deserves better than that. Tim deserves better than a wife who’s anxious, upset and preoccupied all the time.

And there it is, the root of why I’ve been feeling so low lately: maybe I’ve fought valiantly for the last two years, but I’m not sure I like the person I’ve become.

Extensive Endometriosis

Hi everyone, this is Tim. Tanya wanted me to let you know that she finally had her surgery yesterday, and to give you an update.

The doctor found endometriosis on her cervix, bladder, back side of uterus, and right ovary. He classified it as stage 3. Everything was removed, except for the endo on the right ovary – he didn’t want to risk damaging it. He said endometriosis isn’t usually seen on the cervix, so he sent that off to pathology.

Tanya is fine, but recovery is rougher than we anticipated. There’s lots of pain from the gas injected into her abdomen, plus abdominal pain from the surgery and some nausea. She’ll post more once she’s feeling better.

Thanks so much for all your support!