Monday, March 30, 2009

Laparoscopy and hysteroscopy: what should I expect?

So I signed on, full steam ahead, for surgery on Thursday.

Seemed like a good idea at the time, but I'm realizing I'm a little scared of the procedure and wondering what it will be like. It surprises me that I'm so nervous, given that I've been through a number of surgical procedures during my cancer treatment and now during the last 19 months of IVF. But I am.

So, thought I'd reach out to the blogosphere for a little help from my friends. Can any of you who have been through a diagnostic laparoscopy/hysteroscopy walk me through your experience? What was it like? Did your Dr. find anything in the surgery?

Some of my specific wonderings:

What is surgery day like exactly? Who did you talk to? (anesthesiologist? RE? or just nurses?) Were you sedated before going in? How many people are in the OR? Were you awake when catheterized? Did they tie you down while you were still awake? (some crazy fears about being completely out while having gyn surgery surfacing here)

What did you feel like immediately after when you woke up in recovery? Did you have throat pain? Were you still catheterized at that point or did they take the tube out while you were still asleep?

How did you feel one day after? (Can I be alone the next day, letting Will return to work?) How did you feel a few days after? What kind of painkillers were you given? (or was it just tylenol?) I was told I will feel about 80% the Monday following (so four days post-op) and am planning to return to work in the psych ER that day. Does that sound reasonable?

I know the risks are low, but my nerves are getting the better of me. So I am thinking that hearing your experiences will help. Your shared stories will then be out there for the next infertile googling for info on this procedure, helping her to feel a little less afraid.


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Sunday, March 29, 2009

Sundays of grace #8

1. Ice fishing: Ok, I've never done it and probably wouldn't like it. It's over for the season, but has been something I'm fascinated by. During the winter, I enjoy watching the whole subculture of it: men in snowsuits, dragging sleds out on to the whitened surface of the lake and drilling through the ice to reach the water below. I love watching them walking out on the ice, often followed by their dog, then sitting there, in the barren whiteness, just fishing. It seems like it must be such a solitary, almost meditative activity. Now that it is spring I will enjoy seeing ducks and geese back on the lake. An affirmation of life and new beginnings.

2. Frogs in the pond: We arrived upstate friday night late, and one of the first things we noticed was the croaking in the darkness. Spring has sprung and the frogs are out, making sure they are heard in the night. It was a wonderful confirmation of spring to hear their voices insistently saying, I'm here! I'm here!

3. An unseasonably warm spring day. No coat needed. Sun on our faces, forsythia in bloom, the sense that everything has been lying in wait under the snow and the coldness waiting to come back to life. Hopefully we will come back to life soon too and are just quietly mourning before emerging again, ready to face life's unknown possibilities, both the potential triumphs and disappointments.


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Friday, March 27, 2009

IVF #4: RE meeting

We met with the RE today and continued to discuss what to make of the latest failure and where to go from here.

He said that our repeated failures are most likely due to chromosomally abnormal embryos. However, he also said that we make lots of good-looking embryos and that based on that (and my age), he thinks we will likely succeed if we stick with it.

He emphasized that we're not near the end of the line, even though emotionally we may feel like it. He said we should not even consider donor egg at this time because he still really thinks we have a good shot at having our own genetic child.

In terms of specifics, the RE said that my eggs tend to be almost all mature at retrieval and that it's possible they would be more likely to be euploid if we triggered a day earlier when they are a little smaller than is the typical optimal size. He also said we should definitely do co-culture again.

We also talked at length about PGD. He said we could consider doing it at this point, but he doesn't really recommend it because research demonstrates PGD results in a lower live birth rate when it is used (because of the trauma to the embryos and the possibility of false positives/negatives caused by mosaicism). He said, though, that he would understand if we desired to use it just to get a read on what's going on with the embryos (even though it would lower our chances of success) and will do it if we want to. We asked if we could transfer the best looking embryos and then do PGD on any of the embryos we don't transfer, and he said that yes, we could.

He said also that given the number of failures, it would make sense at this point to look into other potential issues impacting implantation. One possibility is undiagnosed endometriosis, another is lining issues. So, he's fitting me in for a laparoscopy and hysteroscopy next Thursday to look for endometriosis and uterine issues. He'll also do an endometrial biopsy at that time to send to a colleague at Yale who does some sort of experimental testing on the lining.

We told him that we'd consulted with the head of the famous IVF clinic in Colorado and that we were going to get a consult with the head of the other great NYC clinic just to get their thoughts. He was supportive of this and said that it made sense to get second opinions. He continued to say that microarray is just not proven at this point and that it wouldn't be ideal for us because of the paucity of blasts anyway.

So that's it. Surgery scheduled for Thursday. Another consult with the other clinic in NYC the Monday after that. Colorado on hold for now.

What a whirlwind. Reasonable plan? We're not sure. Will and I both feel that our heads are spinning. And our hearts? I couldn't even begin to tell you about our hearts.

I feel like we'd agree to almost anything at this point. General anesthesia with intubation? Sure! Stomach pumped up with gas? Sounds grand! Abdominal incisions? No problem! Need to chop off my right arm? Here, just take it now! Oh, wait...that's going a bit overboard. Unless it might help...


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Thursday, March 26, 2009

Climbing out of the hole

It is still early days and we are both feeling fragile. But after two mental health days at the beginning of the week, I am back at work, and Will is beginning to perk up somewhat, too.

Today is a little bit better than yesterday. Yesterday is a little bit better than the day before. Looks like we're in the process of picking ourselves up, dusting ourselves off, and taking stock of where we're at as a couple and the situation we find ourselves in. One. Foot. In. Front. Of. The. Other.

My RE has called me twice to speak by phone and has also been in email contact with us. We will see him in person tomorrow for a sit-down meeting. We feel that he is truly going the extra mile to be available and attentive, consulting with other doctors, speaking with us frequently, and squeezing us in so that we can meet quickly and not have to marinate in our grief and anxiety for too long without more information.

Will has been making fun of me a bit for this, but we've . . . ok, I've . . . also lined up meetings with the other best clinic in NYC and with another great clinic near the Rockies. We're unsure if we're keeping these appointments, but it is good to have them. Will says I'm aiming to spread my embryos across the United States. But to me, it is more about making sure there isn't something we're missing that could make the difference. Mostly because I don't ever want to have regrets about our decisions now should we have a poor outcome. And also, of course, because I want to maximize our chances of a good outcome.

Here's a quote I recently taped to my computer at work:

"I wanted a perfect ending. Now I've learned, the hard way, that some poems
don't rhyme, and some stories don't have a clear beginning, middle, and end.
Life is about not knowing, having to change, taking the moment and making the
best of it, without knowing what is going to happen next." -Gilda Radner

The infertility journey continues to challenge me to tolerate ambiguity and uncertainty. Not my strong suit. But hopefully I'm growing into it.

We certainly have no idea what is going to happen next. But we're going to hang in there - and try to take each moment as it comes - on the journey to finding out.


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Wednesday, March 25, 2009

Wednesday's with Will: this really sucks

This is pretty much how I feel. It is difficult to tell anyone else what this is like. But, depressed, angry, anxious, and disgusted almost sum it up. I alternate from just feeling down to feeling like I am going to rip out of my skin. At work yesterday, several of my colleagues (who are unaware of what Mo and I are going through) actually commented how relaxed I seem. I am trying too hard to keep it together on the outside. This is really trying and tiring. Since Mo goes through all of the physical discomforts I think I tend not to complain too much until it builds up and overflows. It is time to yell, to scream. To run to the gym. To feel and admit that this sucks.

After I took the above picture (I keep these statues on the bookshelf in my office because Mo has banished them from our apartment), I was searching for it on my cluttered computer desktop when I came across this picture I took on a recent trip to Florida:

Its not a great picture in any artistic way whatsoever. But, if you look closely you will find a great horned owl. Somehow remembering how I looked so long and hard to find this great animal so high in a tree made me smile.

Maybe today I will also take some time to clear my mind, stop catastrophizing, and see if I just can't find a great horned owl in the middle of New York City. It will get better.


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Tuesday, March 24, 2009

IVF #4, the blow-by-blow account

2/26 Cycle Day 2
FSH = 6.8, E2 = 32.7, LH = 5.47
200 Follistim, 75 Menopur
Begin stims

2/28 Cycle Day 4
bloodwork: E2 = 146, LH = 1.9
200 Follistim, 75 Menopur

3/1 Cycle Day 5
bloodwork: E2 = 207
ultrasound: Right: 2 at 11, Left: 1 at 10, 1 at 9
200 Follistim, 75 Menopur

3/2 Cycle Day 6
no bloodwork
200 Follistim, 75 Menopur, 1 syringe ganrilex

3/3 Cycle Day 7
bloodwork: E2: 522, LH = .6
ultrasound: Right: 1 at 13.7, 2-3 <10

3/4 Cycle Day 8
bloodwork: E2 = 758, LH = .725
ultrasound: Right: 14.8, 11.5, 2-3 <10

3/5 Cycle Day 9
bloodwork: E2 = 1180, LH = .954
ultrasound: Right: 14, 14, 11.5, 11, 11.9, Left: 15, 14.5, 14, 12, 11.5, 2-3 <10

3/6 Cycle Day 10
bloodwork: E2 = 1573
ultrasound: Right: 16, 13.5, 15, 10.5, 2-3 <10

3/7 Cycle Day 11
bloodwork: E2 = 2,146
ultrasound: Right: 18, 17, 14, Left: 18, 16, 15, and then a bunch o' others.
HCG Trigger.

3/8 Cycle Day 12
bloodwork: pending
ultrasound: Right largest is 19, smallest 14, Left: similar.

3/9: Cycle Day 13
15 eggs retrieved, 14 mature, 11 fertilize w/o ICSI.

3/12: 5 beautiful embryos transferred at day 3.

3/23: BFN

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Monday, March 23, 2009

It's official

The beta is negative.

I just received the call from my RE. We'll be meeting with him Friday to discuss what to make of this latest failure and what our next steps should be. Seems safe to say that all three of us (Will, me, and the RE) are shocked and disappointed. I said as much to the RE and he said back in this wistful voice, "Yeah. Especially because the embryos looked so beautiful." He shared that he had feared we'd be facing selective reduction, not another negative cycle.

Amazing to me still that we could transfer five gorgeous embryos and get nothing.

The RE said that all ten of the physicians at my IVF clinic have a team meeting tomorrow and he will present my case to the group. I'm glad we'll get some other eyes and minds and opinions on the situation, although I dread that they will conclude that the situation is hopeless. Still, I guess better to find out what they all think.

I stayed home from work today, partially because I haven't really been sleeping and partially because I wanted some privacy to take this call. I would have been in the psychiatric ER today (working, not as a patient, although today the line feels a little thin) and there is nowhere on that unit where you can be alone. And you're locked in thoroughly, so it would be hard to get out (multiple doors and keys) to even have a non-private but more private hallway to talk in.

Will is just crushed and so am I. Learning that IVF #4 failed has been terrible, especially since it feels like we went for broke with the endometrial coculture and aggressive transfer. It's almost as painful as our first miscarriage. It feels like conceiving and raising our own genetic child is an increasingly distant likelihood.

Right now the toll of all we've been through in the past 19 months is reverberating in our lives and hearts, magnified by this latest blow. Shortly we will somehow begin the process of scraping ourselves off of the floor and moving forward, although how right now eludes me.

Thank you for all of your comments and support. They have meant the world to us. We feel broken and so very, very alone. Reading your words lessens our aloneness. We are extremely grateful.


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Saturday, March 21, 2009

The two week wait: a pee-on-a-stick pictorial narrative

Friday, 3/13: 1dp3dt
Tested negative. So this is our baseline test. HCG is out of my system! Going away for the weekend. Will not be testing.

Tuesday 3/17: 5dp3dt
Tested negative. Implantation may not have happened yet. Feeling relieved that it's negative. A positive at this point would suggest higher order multiples, and we are not after our own reality show! Wipe some sweat off my brow. Palpable relief. Feeling confident we'll get a positive down the line. This cycle is going to work!

Wednesday 3/18: 6dp3dt
Tested negative. Implantation should be happening about now. Some people on other boards got a positive this day with twins. Still feeling some relief that it's negative because I've been so stressed about triplets or more. I know we'll get a positive any day now. Confident that this cycle is going to work.

Thursday 3/19: 7dp3dt
Tested negative. Hmmm....thought with putting in five beautiful embryos we'd have a positive by now. I mean, really, there must be at least twins in there, yes? Puzzled. Catastrophic thought that this cycle is a failure pops into my mind, but I try to bat it away. Feeling...a little less certain...but still hopeful that this cycle will work. Have broken out in hives from PIO - just like every cycle. Am miserable physically. Job offers coming in. People want decisions. Starting to feel a bit nuts. How can I make any decisions now?

Friday 3/20: 8dp3dt
Pee on stick. Take it back to bed to look at result with Will. We turn on the light and look together.It's negative. WTF?? This should be positive. According to the information leaflet in the box of HCG test sticks Will bought me, 83% of women who are pregnant will test positive at this point.

It's still early. But not that early. There's a good chance even with a singleton that this would be positive by now. And we transferred a schoolroom of embryos!!! We pull the covers over our heads. Filled with gloomy thoughts. Can barely get out of bed. Feel defeated. Try to remind ourselves, don't give up. Tomorrow it could be positive, although it isn't looking good. Maybe it's a singleton. Yes, that's it - it's a singleton!

I remember that when I went to the bathroom after transfer, I felt fluid run into the toilet and thought I saw a few tiny dots the size of pin heads in the bowl and briefly wondered if the embryos had fallen out. Maybe my uterus has been empty this whole time. But that can't happen, Mo! Or could it?

Sigh. Get up. Scratch hives, which now coat my neck, back, arms, chest. Maybe the allergic reaction keeps the embryos from implanting? I must be filled with histamines. Feel very sorry for self.

Curse the 2ww. Start praying to the Universe. Begin bargaining (note to self: isn't this one of Kubler-Ross's five stages of grief?). Try to focus on other things, which is helped some by all the work/grant craziness.

Saturday 3/21: 9dp3dt
Pee on stick at 6:45 am. Take it back to bed to look at result with Will. We turn on the light and look together.
It's negative. But wait, this is the part where I was going to post the surprise picture with the positive pee stick! This is not how the story is supposed to go!

Ninety-three percent of women who are pregnant test positive by this point, according to the damn HCG test box. And longtime readers know that I am a big believer in stats and am especially vulnerable to all forms of Infertility Math.

We aren't surprised today; we are resigned. Will and I cry together.

We also laugh cynically for being fooled into believing IVF #4 could ever work. Suckers!

We drag ourselves out of bed to get the luteal phase bloodwork required by my clinic. This feels like an exercise in absurdity. I am not going to be in the 7% of women who test negative but are pregnant. In fact, I'm pathetic, covered in self-inflicted bruises and hives. The PIO injections have not been endured to support a fledgling pregnancy; they have been another unintended act of masochism.

Feeling major AF cramps. Period wants to come. Because it is OVER.


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