I Never Call, I Never Write

Steve's business partners came for a meeting this past weekend and, apart from a certain disinterest in the world of the living that landed me in a grocery store (the Twin Cities have the fanciest grocery stores, I swear) buying a hogshead of chicken salad and clean place mats twenty minutes before the gentlemen arrived for lunch, it was rather nice to have the distraction. They tactfully avoided all mention of our Unpleasantness and, even more tactfully, got me so drunk at dinner on Friday night that I thought a Cuban cigar sounded like a good idea. A cigar, my friends, is never a good idea. Exhibit A: my brother's rehearsal dinner, the mere mention of which can still turn Steve a delicate green. Exhibit B: last Friday night.

Saturday I had offered to make dinner for them and it literally took me 50 minutes that afternoon to trim one pound of green beans. I had to keep placing my head in the vegetable crisper in an effort to revive myself enough to snap just one more bean.

On Sunday Steve, Patrick, and I planted 125 trees around the property. I should say "trees" because we got them from the conservancy and they are mighty weensy. Patrick said "THAT is a tree" and pointed to a tree. "THIS is a stick," and shook it. Still, he cooperated fully, approving of anything that involves getting that dirty. We had a system: Steve dug the holes, Patrick crammed the baby trees in, and then I poked the roots down and stamped the earth into place. Afterwards we all took a bath in my enormo-tub with lots of bubbles.

When you think about it, life is quite good, really.

Sorry I have not posted for over a week. I was struggling with what to say about recent events and I still don't know.

We are not even close to deciding what to do about a second child, if anything. The nice thing about a D&C (other than the anesthetic and the hot-air blanket, neither of which I got this time. not that I am bitter, because I am not. it was my own damned fault for being too cowardly to seek a follow-up ultrasound) is that there is no point in deciding anything for five or six or twelve weeks anyway. Nothing is going anywhere, if you know what I mean. I like to get started thinking about it, though, because it gives me a chance to live with different ideas before having to act on anything.

Right now we are confronted with the Dilemma of the Single Frozen Blastocyst. Our last IVF cycle produced four normal embryos, three of which we transferred. Actually, at least one of the three was not really normal as the pregnancy that resulted was a blighted ovum and that is, I believe, always a genetic problem although not our specific genetic problem but... let's not get sidetracked by details. The point is that there was one blast leftover and our instructions were to freeze it if it continued to grow. It did and they did, so we currently have one frozen (wait for it) SEVEN DAY embryo on hold. Seven days sounds like it should be good and all, but my understanding is that the later embryos are frozen the lower the rate of survival. And frozen success rates are not all that good anyway. Let's say about half that of a fresh cycle on average (although I am pulling that number out of my delicately carved behind, so feel free to correct me). The phrase "snowbaby's chance in Hell" springs to mind. For it to survive, implant, grow and be normal.... the mind boggles. It is to laugh, really. However, we can't just destroy it. I mean, we could and heaven knows we do not romanticize little cell clumps around here, but we really WANT another child and that embryo represents a chance. A very very very very small chance but still, a chance.

So we decided we have to do something with the frozen one. But a FET costs about $4000 and the embryo is in DC, which is a hassle. My friend Julie pointed out we could just have it shipped here, preferably with a case of Utz potato chips attached, and luxuriate in the ease of cycling in our backyard. That sounded pretty good, so I looked into the local clinics again and realized that a whole new fresh IVF cycle here is only $7500. Now, I am no cost accountant but it seems to me that spending $4000 on a blast that is mostly doomed is rather silly when we could just spend the extra $3500 or so and get a crop of rosy new embryos all ready to go in case the Frozen One expires before transfer. We were thinking we might as well skip PGD because (in addition to doubling the cost. PGD adds $4500 but the only local place that offers it is more expensive) the last two cycles each produced fifteen embryos out of which six and then nine embryos were deemed normal but only half of the normals survived to day five... OR SO WE THOUGHT. Cue tense music.

I ordered copies of my DC records in preparation for consulting someone here. I flipped through them and was startled to see that rather than 6 and 9 normal embryos, the PGD report said there were 3 and 5. Also, the embryologist's notes indicated that 14 of the 15 embryos tested survived to day five. What the hell?

Well, it is a funny story actually. The night before embryo transfers each time we got a call from the PGD guy saying that they had completed round one of the PGD testing and we had six/nine normal embryos. The next day we were told only three/five (four, long story) were available to transfer. We ASSUMED that the others had just stopped growing. 

This was what is known as a "communication problem". What round one meant, actually, is that they had tested ONE chromosome. Of the 15 embryos, 6 had a normal first chromosome. The next day's resulted indicated the number of embryos left after the fourth chromosome was tested.

Whoops. Boy, do we feel stupid. I mean, when 9 out of 15 embryos are genetically normal it makes sense to, I don't know, have another try the old-fashioned way or something (work with me here. I realize that probably none of this makes sense anymore.) When that number drops to one in three it is less promising. So who the hell knows. I have a consult here next week and I thought it would be refreshing to have an appointment in which I was legitimately seeking advice rather than pushing my own agenda. I have no agenda. I literally have no idea what we should do. Probably give up, eh?

Bleh. 

I guess the good news is our terrible pregnancy history now makes more sense in light of the testing, so I can stop feeling like we are monstrously unlucky when statistically we should be favored. The bad news is our terrible pregnancy history now makes more sense in light of the testing, so we are indeed monstrously unlucky. In reproductive matters, at any rate.

That's my update. Let's never go this long again without talking, ok?

Comments

[Lisame]

I was worried about your mental health. Down here in Texas, we're still praying for you.

[Rach]

Wow, I'm the second to post! Thinking of you, Julia.

[Holly]

Thanks for writing. I missed your posts!

[Angie]

I hope that you can relax and make a decision! Good luck!

[Sami]

Well hell... advice - none to give. My hope is that this doctor you're seeking advice from knows what he's doing and can look at your records and go - okay lets try this.

And lets not talk about cigars again- I had flashbacks of me, drambuie, and cigars... not a good vision. On the upside it was a very good distraction.

Also wow 125 sticks planted. Having planted "trees" from the conservation club before I can totally understand the term sticks to describe them. It sounds like it was a good distraction for you.

So yeah uhmm second child... no thoughts - but will support you and Steve and Patrick with whatever decisions you make.

[pk]

i love to think of you in the far off romantic place where 125 trees can be planted in one garden.

do hope your other planting plans go well.

[Bonnie]

I am happy to see you posting again. I'm so very sorry for everything you guys have been going through and hope like hell for a happy resolution.

[Colleen]

Ah, Julia. I missed you.

YEAY! for tactful people who get you drunk! (cigars notwithstanding)

[Summer]

Glad to see you back!

Just wanted to throw an idea at you for your frozen embie. I'm not really clear on all the specifics, but don't some clinics do "natural" cycles where they don't use any meds? Isn't there such a thing as doing a natural FET? Maybe this would be less costly and if your seven day doesn't survive the thaw you won't have needlessly stuck yourself with a million needles.

Like I said, I don't know if I know what I'm talking about so this could just be nonsense I'm throwing at you.

[Jo]

I never comment, but my heart has been breaking for you. If you are going to think about IVF/PGD again please, please consider finding somewhere that does PGD on day 5, they can take more cells and do less damage to the embryo. I realise that SIVF in sydney is further than DC, so you probably don't want to come here, but there must be somehwere in the US that does it.

[Meg]

Hoping for the best for you in a hideous situation.

[Amber]

You will know what to do, and when to do it. Trust your instincts. AND ARE YOU TELLING ME YOU DON'T HAVE UTZ CHIPS?? ahhhh, that is horrible.

[Marsha]

We once planted sticks, too. By "we" I mean my husband but I do like to share in his successes so...

I do not pretend to understand your math lesson. Other than it sucks, of course, that you are so well versed in these things.

[Schnozz]

I'm glad you're back. I'm tired of checking this blog, only to suddenly be forced to sing "Obladi," in its entirety, to myself. It's like a tic or something. Desmond has a barrow in the market place ...

And then I get to thinking about Corky and wonder how he's doing these days. And whether Kellie Martin is finding any work. My point is that you need to choose your titles carefully because I AM ON A HAIR TRIGGER OVER HERE.

Anyway. Welcome back!

[Judy]

No advise on reproductive matters, but did you know you can purchase pre-trimmed string beans? Not that one plans ahead a weekend of getting shit faced:
- Friday, get so drunk that I can't see.
- Saturday, redeem myself by making dinner - mental note: buy pre-cut beans to reduce time spent with head in veggie crisper..
- Sunday, forget the whole ordeal ever happened and trow down a bottle of red with dinner.

OK, clingy baby #1 is calling.

[Celeste]

I agree, let's not.

So you snap the ends off of green beans? You don't cut them?

[Cris]

Glad you are back - was a little worried there.

[sozzled]

glad to see you posting. I myself am a bit "under the weather" from the bowling bashing last night, so I am sharing your pain. Thankfully there were no cigars invovled. so trees= good, local grocery stores = also good....everything else is a bit fuzzy for me right now....but I got enough to know that your math is better than mine so you ought to keep score for us next year at the bowl-a-thon.

[Mir]

How much chicken salad fits into a hogshead, exactly?

Do we want to hear more about the cigar or did my overactive imagination pretty much get it?

Also, we need stick, er, tree pictures. Please.

(God, I'm so demanding. I mean, you're just back, and I'm all TAKE TAKE TAKE. Can I get you a cup of tea, at least?)

[Carla Hinkle]

I make no pretense of understanding the math -- but if the gist of it is, the genetics mean you are monstrously unlucky, I empathize and agree. What are the odds on Patrick's appearance, by the way? They must be looooooong. Darling boy.

Hope you figure out something to do that satisfies you.

[Lydia]

Ha, there you are! All i can say to you about the feeding people thing is: Frozen. Beans. Always. Never ever fresh. It's just not necessary. To me, there is almost no difference between the two, and there are few kitchen chores I despise more than preparing fresh green beans. Ugh.

[evelin]

Just a random thought ... the old fashioned way can still work ... at SGF we had 3 out of 28 embryos deemed normal (all the rest had multiple aneuoploidies). We transfered all three, none survived to create a pregnancy. Our doctor suggested we use birth control unless we were prepared for further losses, and that the three embryos they transfered very well could have been imperfect, as well. BUT. I got pregnant with my first daughter the very next month. 20 months after that I had my second daughter. Both girls were unexpected, both genetically perfect, both highly unlikely. I just want to say no matter how slim the odds, it can happen. And I hope it does.

[Jenn]

You shouldn't have to make decisions such as these without Utz. I'm not too far from the plant, if you want me to send you some, I'd be more than happy to, just send me an e-mail.

I'm not even sure I followed what all the options are, but good luck in picking the best one for you guys.

[Jill]

I think I need the playdoh visual aid again.

[Sheridan]

No, let's not! I, too, am sick of sicking Obladi over and over and over again as I refresh.

In a weird way I am pleased to hear about the test results, because I just didn't get it before either. You were always supposed to have a 50/50 chance. At least this makes a bit more sense.

I also second the query about the natural FET, although I have a sneaky suspicion that is exactly what you were talking about, knowing the hideous cost of medical procedures in the US. Tell me, please, that you get more bang for your $4000 than a natural cycle?

[Sheridan]

Singing, not sicking. Sorry. Nothing to do with your Friday night.

[Judy]

Sorry for 2nd post, but:

How does non-PGD IVF improve your chances as compared with the unassisted FLB (fuck like rabits) method? Unless you're hoping they will fuck things up and mix your eggs with less doomed sperm. The whole meet a Steve look alike in a bar scenario without the guilt.

[Kathleen]

I'm sorry for the bad news, but glad you know now.

Best of luck with the consultation and future plans.

[Miz S]

I missed you, and I thought about you off and on over the week. I'm glad to hear that you are smoking cigars and planting trees and bathing in the Family Tub.

[Mia]

I think after the 10th green bean I would've said: to hell with it, let's get pizza.

Good luck to you - everyone is rooting for you.

[Sarah]

I missed you, but I figured you were taking a much needed break from thinking about 'ye old reproductive dilemers'.
Sarah

[Katie]

I'm glad to hear that things are going better, Julia! I love your writing, and I love reading your posts.

OK, now here I go with some COMPLETELY unsolicited advice, and if this ticks you off, I really apologize.

Why don't you do another fresh IVF cycle WITH PGD?? And why don't you do it at the very best place in the world for PGD - the lab director there basically INVENTED it - St. Barnabas. I know from experience that cycling from out of town is a pain. I travelled to St. B's from Toronto. Twice. Once it worked, once it didn't. Still, honestly and truly, they are simply the best at PGD. With your particular issue, I think doing PGD at a top place is the way to go. And Shdy Grv (no offense to anyone who goes there) is NOT the best for PGD. Not by a long shot. They may have even transferred a genetically abnormal embryo to you that they THOUGHT was normal. There are no guarantees with IVF, pregnancy, PGD, etc., but I think you should try PGD at a place that does it the best. Why not just have a phone consult with St. B's to see what you think of them? You've already got your medical records for your upcoming local consult, and it would be quite easy to set up a phone call with one of the St. B's docs. God, with your history, you could ask to speak to the lab director and ask him what he thinks....

Just my two cents, but I wanted to put it out there. I'll be reading to see how your decision making process is going.

All the best, and I'm hoping for good things for you!
Katie

[Steph]

I'm sorry for everything you've been through, and I am hoping for the best for you, Steve and Patrick.

I wanted to suggest that you ask your DC clinic about your specific chances with FET. I recently found out that my chances with FET were a lot better than I'd always heard/read about for FET. My clinic has an 80% thaw rate, and my doctor put my chances at an FET success as the same with a fresh IVF. I was very surprised. Finally, I found out that by doing some of my monitoring for the FET locally (my clinic is very far away), I was able to reduce the cost of the FET from $3500 to $2200 with the chance of my insurance company picking up the costs of the local lab work and ultrasound.

[carosgram]

The most importnat thing to remember about cigars is that you are not suppose to inhale. I have done the rum soaked crooks and cubans as well as others. Cubans were the best tasting. However, once burned you will never truly enjoy a cigar again. Oh, well. I have felt for you as you have gone through these last few weeks. It is always hard to know what the right thing to do is. I am sure you will make the right decisions for your family. Wishing you the best!

[Leggy]

I also am having a hard time following the math and what that means re: lucky or unlucky.

I third the thoughts re: natural FET. That's what Cecily did, so I know it can be done. Not sure if clinics in your area do it.

Also, do you know where you got that factoid re: "blighted ovum is always a genetic problem?" Our second pregnancy was 2 blighted ovums, which I contributed to my possible ACA/clotting disorder. In a strange way, knowing it could be genetic would be easier to take.

[Toni]

Been thinking about you a lot. Gads...what you've been through - you deserve more than that cigar :) We understand why you've been MIA...continue as long as you need.

That being said...I've gotta ask. HOW do you get what Steve has?? I mean, I know you can't 'catch' it - but I don't understand how you can be a carrier for something like that...perhaps a future post??

Anyways, the offer still stands to cycle down here in the Windy City. Feel free - I will have an extra room shortly due to construction - and Patrick could meet my oldest (so I could make sure they are compatible for marriage :) ).

Thinking of you...

[victoria]

I'm glad you posted. I don't really understand this post, but I was glad you wrote it. I missed you.

[Amy]

You lost me somewhere around "3/5 (four, long story)" ... but regardless it sounds like you may be on your way to some answers. Best of luck.

Oh, and cigars? NEVER a good idea -- trust me on this one!

[Rachel]

Damn, now I'm craving Utz Salt & Vinegar potato chips. I was doing so well on my no-junk-food kick ...

[anne nahm]

Glad to see you. :^)

[Lisa B]

Please, no more Obladi, because ditto on what Schmozz said - except I couldn't remember Kellie Martin's name at 2:30 this morning and then I got to thinking about Corky and then Evita and then Madonna at which point I took a sleeping pill and woke up with the alarm at 6:30 very cranky.

You're an amazing writer, and while I can't wrap my mind around what you're going through (or your math), I love reading your life.

[Deb]

Hey, welcome back and thanks for all you share.
I won't pretend to understand a word of what you explained except to say I am sending you lots of love and healing light as you make really big life decisions and heal from a trauma.
hugs

[Noelle]

Let me be clear -- I am not making light of the situation. But I felt like there should have been spreadsheets and pie charts and maybe a powerpoint presentation accompanying that post. Or did I just miss the memo with the powerpoint slides attached?

Anyway. Glad you're doing ok, sorry about the cuban cigar incident (two puffs is my limit), and welcome back! We surely missed you.

[Alex]

Um. Not to go against the other posters but I think non-natural-cycle FETs have much higher success rates, at least overall. I did two natural cycles with my local clinic (which to be fair were, by the OMG kind of standards one learns in this process, cheap at around $1.5K each -- that is, if any medical procedure that is intended to result in a baby but doesn't can be considered cheap). Where was I? Oh, if you're going to do the FET I'd do hormonally assisted for sure. And I'd check on the success rates; I think they have gotten a lot better in the past 1-2 years.

All that said, no idea what you "should" do but I do very sincerely hope you'll find success by whatever path you choose.

[Emily]

Julia, we missed you, but you shouldn't have to feel sorry about not writing after all you've been through. Anyway, you're the expert, you know what's best for you, so go with your gut.

[Michelle]

125 trees??? I hope you have a giant leaf-blower! Gads, we have like 10 trees on our property and I swear the leaves mutliply after dropping.

I can't help you decide what to do, but I could send you a few bags of Utz. Seriously.

[Amanda]

Welcome back - albeit in a fug of stale (by now) cigar smoke! My lovely husband (who does not smoke normally) has this thing about cigars & weddings and they ALWAYS make him ill (or is that the alcohol too???Hmmm) Hope your head has recovered at least.
Thanks for the stats - makes things a lot clearer on the rationale behind the multiple recurrences...
Good luck sweetie - enjoy seeking advice from the dr!

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