Friday, March 30, 2012

Decisions on travel...and blood work



I have a small dilemma. I'm trying to decide what to do about some potential upcoming travel. I am slated to give a workshop in Rochester, NY in late April...two days after that, I am supposed to give two talks at a conference in California. If I am still pregnant (sorry, but I can't help but think of it like that), I will be 14 weeks along at that point, second trimester, hopefully in a stably-pregnant place.

My OB says it should be fine to go.

I tell myself it should be fine to go.

I am expected to go. This workshop is mandatory and I signed a contract that I would do it. And this conference is an important one for my current area of research.

But I am scared. Really scared. I associate conference-attending with miscarriage, based on the last pregnancy. I am scared of being far from home. I am scared that I might end up in a situation where I have to lift my luggage - into the overhead compartment, onto a conveyor belt, onto a luggage stand at the hotel, etc. I am also scared of "overdoing it" in some other poorly understood way, of having to push through fatigue or other symptoms because I have to "be on" at the conference, attending dinners, etc. in addition to giving my talk. I was hoping Will could come with me, but he has just found out he has other work commitments he can't get out of.

So I'm not sure what I should do. I'm not sure what I'm going to do. I've always vowed I won't be one of those people who holes up in a cocoon during pregnancy, afraid to do anything. But this pregnancy is so precious, and the causes of at least some of my miscarriages so mysterious, that I find myself wanting to cocoon.

The one upside? The conference is about 1 hour away from where I once used to live, and where a number of dear friends of mine still live. So if I go, I'll try to stay on a few days to a week to be able to see at least some of these folks post-conference.

What do you think? What would you do, and why?

Mo

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In other news, I'm waiting (im)patiently for my progesterone and estrogen results from an blood draw earlier today. I will post an update when they finally come in, not that it's a big deal to anyone but me...but anyway...

UPDATE:

Blood work is back...

So, as of today, at 9 weeks, 6 days, my progesterone is doing great at 58.4. I will be (gulp) dropping to 1/2 cc daily and keeping the one suppository in place for now. My estrogen has dropped to 763 (from 1,169), I guess because I dropped from 3 Vivelle patches to 2. So we will be staying at 2 Vivelle patches for a while yet. Checking everything again on Monday to see how it's looking...


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Thursday, March 29, 2012

Uncharted territory



So, still pregnant over here. Nine weeks, five days. Farther along by a few days than I have ever been.

Strange.

Wonderful.

Still so scary, still so waiting-for-the-other-shoe-to-drop, yet calm at the same time, accepting of the unknown, of whatever is to come.

I think even I know I have done everything I can do, and then some. And that helps so much.

Often I can feel the presence of my expanded uterus in my abdomen, feel the fullness there internally, occasionally feel a pain or a momentary cramp when I twist or move (round ligament pain?), but more often just a physical sense that something is there.

This morning, I woke up and couldn't feel it. My belly felt flat. I didn't feel nauseated (usually when I first wake up is when I feel the best, despite the moniker "morning sickness"). I had a moment of terror, "It's gone!!" before calming myself. Nothing is gone. Relax. You're having a moment of peace. Let yourself have it.

And I am nauseated now, waiting for my lunch to arrive, and feel the fullness of my abdomen under my black tights, feel the weight of the ever present fatigue.

I wish that yesterday's ultrasound marked a distinct walking through a doorway psychologically for me. I know that on one level it does.

I've never been this pregnant before, I keep saying to myself.

And at the same time, I am still afraid; I still have some moments where I perceive this baby as a wind-up toy, one that was better wound up than any of the previous ones, but that will still inevitably run out of steam, move sssslllloooowweeer and slllloooowwweer until it finally comes to a complete stop.

It sure wasn't moving slower and slower yesterday, though. Yesterday, this baby looked like a maniac. Looked like it would squirm out of my hands if I were holding it and shimmy across the floor and out the door.

I know there is no evidence for the wind-up toy theory, except for the prior losses. I think a lot of the wind-up theory actually stems from a failure of imagination on my part. From the fact that it seems incredible that two cells, an egg and a sperm, could come together and make something that would then take on a life of its own. Have all this energy to grow and divide, and grow grow grow, and now move! Twisting and turning inside of me.

So here we are. Still scared, but also, luminously, amazingly pregnant!

I have no idea how I will feel as the coming days unfold, as time hopefully continues to pass. That's the nature of uncharted territory. I look forward to exploring it. I am trying to make no demands, have no expectations on how I "should" feel about any of this. Rather a curious and open stance.

Uncharted territory, here we come. One step at a time.

Mo

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Wednesday, March 28, 2012

All is ok!


Thanks for all of your well wishes and thoughts. Sorry to worry anyone with the lateness of this post.

What a day!

My OB was backed up 1.5 hours. We also had a patient emergency earlier today that necessitated police involvement (a very rare event), and then I had back-to-back sessions until just now, so this is the first I could post.

The OB's staff  was a little funny today. They were convinced I am 12 weeks pregnant because someone had input the wrong date in the computer. They didn't want me to have an ultrasound and were going to do a doppler instead. "We'll just take a listen." (I don't think so!!) They finally gave in and said I could have an abdominal ultrasound when I said absolutely no to the doppler, but they still seemed to think they were clearer on how far along I am than I am. Ummm, no, unless I've fallen through a wormhole, I am in my 9th week. I need an ultrasound. A transvaginal ultrasound, please. Which my OB concurred with immediately once she was finally on the scene.

So with the ultrasound we saw that...

Baby is alive!! Measuring 9 weeks 5 days, so one day ahead. You could see him/her waving arms and legs and twisting his/her whole torso, too. Wow! This embryo is really, really active. It was something to see.

My OB says all continues to look very, very good, and that our risk of miscarriage is down to 2%ish at this point.

Still trying to process this. All is well! Better than well! I am still shockingly pregnant!

Good news!! Continued good news!!! Whoever would have thought?

Mo

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Tuesday, March 27, 2012

Prophecy?



Our cleaning woman came this morning and told me she'd had a dream about me and Will. (Yes, I'm embarrassed to say, but we are lucky enough to have a cleaning woman.)

She dreamed that she came into our second bedroom (which over the past five years has more and more taken on the look of an office/ second bedroom/ sometimes storage space), and that Will was decorating a nursery.

He was decorating a nursery, she said, because we were going to have a little baby girl.

Cue me speechless.

Thinking about it, it is likely not a complete mystery to her that we are pregnant. The pregnancy books on my nightstand and my multiple medications, for example, might be a tip-off. But that said, she's unknowingly weathered at least four or five of the last seven pregnancies (I think she wasn't our cleaner for the first three...)...and this is the first dream report. And as she was talking, I wondered if in her culture dreams are taken as more significant - as actually foretelling the future - than they are in mine. I'm not sure for her specific culture, but I wouldn't be surprised.

She knows Will's entire family very well. She was a live-in nanny for his older brother's family in Far East Asia for several years and then in the U.K. with them for a few more years as well. They helped her immigrate to the states when they returned after a number of years abroad, but don't need a full-time nanny any more, and so several members of Will's family have hired her to clean for them on a part-time basis. So...all that to say, she knows that between all of Will's siblings, they have nine sons and no daughters. It would be a very special thing if we were to have the first girl in a family already bursting with children.

Of course it would be a very special thing to have a living child of any gender. And everyone in the family is on board with that.

But anyway, very funny that she had this dream, and that she took the risk to tell me about it. We don't talk about it, but I'm almost certain she knows on some level the great difficulties we've had over the years. She's seen all the syringes and medications, books coming off the shelf about IVF and then going back on the shelf, pregnancy books doing the same, miscarriage books doing the same, pregnancy-after-miscarriage books doing the same...you get the idea (also perhaps that I use reading to cope with stress and loss!)

I like that she had this dream. That maybe, just maybe there is something different about this pregnancy. Something she too can sense. Something that will allow this baby to grow and go the distance.

Tomorrow  at 10:45 AM brings the next visit with the wonderful OB and the next ultrasound. To say I am terrified doesn't even begin to touch how I feel. So hoping for good news. So steeling myself for devastation. Tomorrow will be 9 weeks, 4 days. We've never gotten that far before.

Mo

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Monday, March 26, 2012

Update on my sister



I realized never posted on what happened with my sister after it became clear in December that we couldn't use her as an egg donor (after her AMH level came back at 0.19). Dr. Schl. had offered to speak to her to explain what this meant for her fertility future as a 31 year old single young woman, especially in conjunction with her FSH level (9.87) and antral follicle count (7 or 8 antral follicles, total).

I had first thought I might let Dr. Schl. explain things to her because I didn't want to misconstrue the information and make it sound worse - or better - than it was. Or maybe because I was being a coward. But the more I thought about it, the more I felt that was not the best way to go, and that if it were me, I'd want to have already heard that things were serious so that I could wrap my head and heart around that and be able to formulate good questions and be able to hear what the "expert" fertility doctor had to say about my situation. So I was planning to talk to her.

Really, I was.

In the meantime, I let the donor person know that Dr. Schl. agreed to talk to my sister and that my sister would be in touch. The lovely and unknowing donor person in Denver then proactively contacted my sister and me by email and said that my sister should contact her to set up the appointment. Which meant - GAH! - I felt I had to hurry up and call my sister immediately to explain why that was even happening, lest she contact the donor person and hear it from her.

Cue me in an outlet mall parking lot in the Berkshires phoning my sister in the pouring rain to say all kinds of sensitive things she had no idea were coming.

I didn't know how she would take it. She has always been very laissez faire about having kids, has always said what will be will be, has always said that she thought she would adopt, has always said she doesn't care about biology or genetics and that that that was part of why she felt so comfortable offering us her eggs.

So I thought maybe she wouldn't care that much. But really, I was worried to tell her. I was worried she would care. A lot.

So I took a deep breath and told her that there had been some issues with the tests that we'd had run on her behalf. And that I wasn't a medical expert but that we were lining up for her to talk to one - hence the email from the donor person. And of course she wanted to know more. What were my numbers - my 8 years older than her with six miscarriages under my belt numbers? Ugh. Much better than hers. What had we been told about her situation? Ugh. I told her what I understood, that she might not have too much time to have a genetically related family if she wanted one, but that I was not sure what that meant - how long she might have.

She was devastated. Wailing. And I was crying with her. And then she'd stop herself - and apologize! Saying, "I'm sorry to be so upset; I don't even know if I want children. And I know you've been through so much worse." I had to tell her that no, this was really upsetting; it was ok to be so upset. And that I was upset on her behalf. And that I was so sorry to have uncovered this news for her when all she was trying to do was be so generous and help us. And that even if she wasn't sure if she wanted children, it made perfect sense to be really upset at the possibility that that option might not be hers anymore.

I kept telling her to wait and not jump to conclusions. To talk to Dr. Schl.

Which she did several days later.

He didn't mince words. He told her that if she wanted a family she better start trying within the next six months. And that she really should consider egg freezing. But that she would likely need to do it several times, because she doesn't have many antral follicles.

Ugh.

More devastation. But at least information. For now my sister doesn't want to freeze her eggs. She thinks it is still too uncertain. After watching us (and I've had 110 eggs retrieved during the course of my IVFs, and knock wood, if this pregnancy continues, we'll get one baby out of it....which don't get me wrong, I would be very grateful for!) she seems to understand that an egg does not a baby make. I mean, Will and I are crazy exceptions, but still.

I have reminded her too that Dr. Schl. is amazing and smart and clinically astute, but he is not God. He doesn't know for sure what six months or a year or even two years will bring. Situations like hers are unusual. And that he is a conservative guy. So what he is telling her is her best bet to have a genetically related family. She might luck out later down the line, but if it's really important to her, she might not want to chance it.

So she is still processing all of this information. Mulling it over, feeling her way through it, mulling it some more.

If I were her, single or not, I would throw away my birth control and just see what happens.

But I am not her. She isn't even sure she wants children, or if they need to be biologically or genetically related to her. She feels she isn't ready for children yet.

And that's all she can do. Feel her way through this and keep deciding what she wants to do - or not do - at this juncture.

Whether she wants it or not, her eyes are now wide open about her fertility. Which I feel a whole bunch of conflicting emotions about my involvement in.

But it is what it is.

I'll let you know what happens next.

Mo

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Friday, March 23, 2012

Blechiness



I'm feeling blechy today. And this is going to sound strange, but I'm luxuriating in it. Although it isn't pleasant, it is so reassuring to have some symptoms. So the fact that even sitting with patients today, I was feeling distracted by nausea? That I was decidedly nauseated even after eating, when usually I feel the worst when my stomach is empty? Well, pretty damn cool, in an I-don't-feel-so-good kind of way. I must sound like a masochist, but anything that has me feeling pregnant has me feeling pretty happy.

So count me as blechy but happy. Also count me as bloated, constipated, and tired, but that's ok, too. Weird that my breasts aren't really sore with a progesterone level of 57. I noticed last night that they are looking mighty big, but they don't hurt so much.

I also have to say that even though I feel some nausea, I think I'm getting off pretty easy. I'm not out and out vomiting, for example, which some women really struggle with. And I'm able to eat and drink (have to be careful about what, but that's ok). I've had brief wonderings if I just think this is easy because it is a piece of cake compared to chemotherapy nausea. That was the pits. After one of my infusions, I remember throwing up literally 40 times in a row, just dry heaving after a while, then lying with my face against the bathroom tile floor because I was too spent to even try to crawl back to bed. I remember fearing that I might die - that my stomach would eventually just rupture from the effort. That was rough. I felt like I was ingesting poison. And I guess I was. Poison for my lymphoma, but also for the rest of me. I got through it, though, and it saved my life.

But this nausea? Uncomfortable, but luckily definitely manageable. I know many women have it so much worse. I think it helps me so much too that this nausea is because something wonderful is hopefully happening inside of me. It's not because I have a life-threatening illness. It's because I'm trying my damndest to grow another life inside of me. That helps a lot, I think, to remember the purpose of this nausea.

Oh, and I received a message from the Denver nurse that I can drop to 2 estrogen patches and to 1 progesterone suppository (+ the 1cc PIO nightly), and then at the end of the message she added, "and I'm not even going to talk about that beta." OK, then. So I guess she sees it as no problem (except for the problem that it keeps getting drawn), which is basically what I surmised online and from your comments. Thanks, as always, for the reassurance.

Mo

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Thursday, March 22, 2012

FET #2: 8w5d weekly blood work results



So I heard from the IVF nurse at my local clinic...

blood work is back.

Estrogen is 1,169

which is great, especially because I dropped to 3 patches.

Progesterone is 57

which is just hands down awesome (weird that my breasts aren't hurting more, but I'll take it).

and

Beta HCG = 182,833

which is higher than last week's 140,932, but not much higher.

I'm going to try to assume that it's ok, though, and will ask the Denver nurse when I talk to her. I also have to find a way to get the local clinic to stop with the beta checks!! I did a little Internet research and it looks like the number starts to plateau around week 9 or 10... and I found this article on line, which helped reassure me that basically any HCG number is potentially ok at this point. Weird numbers are going to do a number on my fragile little mind...so stop checking the beta HCG, clinic!!!

Would you be worried about this beta number? Be honest. I'll add to the bottom of this post what the Denver nurse says once I talk to her...

Mo

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Update: Denver nurse never called so I'll try to catch her tomorrow...

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Waiting for the phone to ring


Hanging in...feeling mostly recovered from the IVIG, I think, and it's now only two more days until Will returns from his trip. Really looking forward to his return. In the meantime, all seems to be status quo. I'm having some occasional uterine twinges and momentary cramps, which I am guessing/hoping are growing/stretching pains. Same level of pink tinge...not really spotting, but spotting not completely absent either. My fatigue remains, but seems a bit better today. Appetite and sense of smell are off, but not intolerable. In fact, my appetite seems a little better, which of course has me a bit concerned, but I'm trying not to overanalyze.

I went in this morning for my weekly blood work check. It's amazing how anxious waiting for the results still makes me, even after doing this week after week. Again, the tech wouldn't let me drop the beta check. I told her I only need the progesterone and estrogen and she went and talked to a nurse and said they wanted to check the beta HCG again too. OK...I guess...Just hoping nothing comes back wonky and freaks me out. I'm down to 1cc PIO + 2 suppositories (from 3) and down from 4 estrogen patches to 3. Hoping those numbers are still good enough and that the beta is higher than last week (beyond that, I don't think there's anything to look at with the HCG anymore. And I wish they would stop checking it at my local clinic - Denver certainly doesn't want that lab value anymore - but my local clinic folks don't seem amenable to that).

So now it's the wait. Tick... Tock... Tick... Tock... I think it's silly this is still so nerve wracking for me. I'm pretty certain that the IVF nursing staff at my clinic would never guess how worried I am. After all, usually when someone is this far along, they've moved on into a blissful pregnant state. Or maybe not? Maybe that's just my imaginings of what "other people's" (read: non-miscarriers') experience is like. Sounds like many of you have had lots of fear too, so I suspect my imaginings are incorrect...

I will feel MUCH better getting the results, I think. Even though a rising beta and good estrogen and progesterone do not a live baby make (necessarily). I would have felt even better not checking on things at all. Weird, but true. I think by the time next Wednesday's ultrasound comes around, I'll be terrified to check but desperate for confirmation of the pregnancy or a desire to find out it's over. Thankfully, Will will be back by then, so I won't be on my own, whatever the news is.

I was scheduling patients today for next Wednesday, and as has happened every week, I paused before scheduling anyone for after the ultrasound. I know I'll be too much of a mess to see patients if I've just found out I've lost the baby. So I had the thought that maybe I should just keep my schedule clear....just in case. Ugh. Crazy thinking. I need to just keep living my life, I finally told myself. If the pregnancy is over, I will call patients and tell them there's been an emergency and cancel them. I don't need to predict the terrible outcome and plan for it. Seriously! Especially not every week. Not a good way to live one's life, waiting for and anticipating disaster at every turn.

Sigh.

So hoping the phone will ring soon with these results. And willing time to pass quickly so I can get a little further into the pregnancy. Just trying to be sane in the meantime. And succeeding...mostly...I think.

I will post the lab numbers when I get them. Should be any time now. Thanks for waiting with me.

Mo



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Wednesday, March 21, 2012

Laying low and welcome

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Welcome to those here from ICLW. To give you our story in a nutshell: my husband Will and I are health care folks (he's a physician and I'm a clinical psychologist, and we both work in academic medicine) and we have been at this TTC thing since 2007, when we married and began IVF a month after our honeymoon. I've done 7 fresh IVFs and 2 FETs, experienced lots of failed cycles and six miscarriages along the way, and I am currently 8-and-a-half-weeks pregnant after our second FET with a chromosomally normal blastocyst. We are pursuing immune treatments this time, including IVIG, lovenox, and prednisone, to see if it makes a difference. As our history has unfolded, we have considered surrogacy and donor egg, adoption, and embryo donation. We've also done most forms of testing known to man, and then some, and have traveled half way across the country to cycle. If determination could bring success, we would have succeeded already. But well, obviously it's more complicated than that. So...we are pregnant, or we were pregnant Monday when I last saw the baby on ultrasound. We still are very, very tentative about this pregnancy given our track record, and are taking things one day at a time.  Thanks for stopping by.

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I'm laying low today, working from home, recovering from yesterday's IVIG infusion. The treatment went ok last night, for the most part. The nurse could not for the life of her access a vein to get the IV started, so that was a major bummer. Apparently between cancer treatments and five years of infertility treatments, my veins are quite scarred. Ultimately she got it. Both she and I were very relieved. It was interesting to watch my temperature climb as the time passed - only about 1.5 degrees, but definitely noticeable. I progressed from chills to feeling hot by the end of the treatment. I guess that's part of what the benadryl and tylenol are for.

I feel ok today overall, just weakened. No headache so far, which is a very good thing. I thought I was feeling relatively ok, but then realized that I'm more out of it than I thought. I went to my local supermarket, Fairway, earlier today to get stocked up on provisions, set down my shopping basket to go check on something in another area, and then couldn't find the basket again for a good five minutes. It's like I'm developing early-onset dementia. Geesh. Walking back to my apartment, I realized that that 20-minute shopping trip had taken most of my energy. Later I have to go in to see one patient and I will also be going to a memorial service later this afternoon for a colleague who died unexpectedly a couple of weeks ago. But as much as I can today, I'm taking it easy.

I hate to say it, but although I saw the embryo waving its limbs around on Monday, it is impossible to imagine that I am still pregnant. I lost one pregnancy at 8 weeks, 4 days (so the equivalent of today), and one at 9 weeks 2 days...and I guess it just seems too easy to imagine that there is some imaginary "stop" button that gets activated for my pregnancies right around now. Not logical, I know. I also know that both of those losses were chromosomally abnormal pregnancies. And this one should be chromosomally normal after all the testing we put this embryo through. No spotting today so far, which is a good thing. Next Wednesday, which is when we are next scheduled to take a look by ultrasound, seems impossibly far away.

If only I could travel through time to get to a safer feeling part of this pregnancy. Of course "safer feeling part" may be a moving target, I imagine. I keep trying to remember that whatever the outcome, we've done everything possible to try to make this a success. And that's really all I can do. That and let the time pass.

Mo

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