Wednesday, April 8, 2009

Wednesdays with Will: crunching the numbers

Early this morning at the gym I was on the elliptical. I noticed halfway through my workout that I had covered up the screen on the machine with my towel. I had never done that before (although I've seen others do it) and realized that I am just too darn tired of making sense of all the data.
When Mo and I were at the RE for our latest second opinion, he showed us this enormous chart showing various statistical endpoints for centers around the US. Both of us leaned forward like researchers being shown a secret code. Instead, it was just a bunch of numbers. It was then that I realized that while all of our research has been extremely useful, in the end it can point to the direction we should take, but there will be no "ah-hah" moment.
I like what this RE said. There is no stone uncovered. There is no "right" answer. Ultimately, we need to find a physician we respect and feel comfortable with. In his opinion, that is the right answer. Given our experiences thus far with our center and doctor, that is reassuring.
So, we will forge ahead with a new cycle. With another expert opinion under our belt, it is nice to know that we don't have our head in the sand. Our current RE said he doesn't forecast chances of success/failure past the current cycle and I guess we won't either.
Will
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Tuesday, April 7, 2009

Lap recovery and a second second opinion

Recovery continues slowly from the laparoscopy. My RE had said I would feel about 80 percent better by Monday, which unfortunately wasn't the case. I went into work, and during rounds in the psych ER, nearly passed out. I ended up first sitting on a patient's bed (a no-no, but thought I would fall if I didn't) and then crouching near the floor. I had a brief fear of contracting MRSA off of the psych ER hospital linoleum, but I didn't care at that point. I felt clammy, nauseated, lightheaded, had greyed vision, and was cold and sweaty. Chalk it up to hypotension, I think. Was a bit embarrassing to see the house staff spring into action taking my pulse and BP, offering fluid and crackers ("Look she's tremulous! Her pulse is weak and thready! See how pale she is!") Oops. Sorry, eager young physicians, I should have stayed at home one more day.

After crawling through the morning, Will picked me up and we went to see the head of the Other Great Fertility Center in NYC for what felt like our zillionth second opinion, but was actually only our second second opinion (so third?).

We'd seen this RE once in the past, before we even got married, just to get everything checked out. He remembered us and said, "It's been a while! How have you been?" Then he looked at our chart and said, "Oh, yeah. Oh." So things began on a somber note.

He seconded what the Colorado doctor had said a bit, stating "Given how things have gone, we really have to start to wonder about your health history and the impact it has had on you." We asked whether he'd seen others with my particular chemo treatment have this kind of problem, and he said that no, he hadn't, and that the literature didn't support it either, but that it was the most likely explanation for all of the chromosomal problems.

He said it was very unusual but not unheard of to have such a great response to the medications in terms of numbers of eggs and embryo quality (he called my response "textbook" and "beautiful"), but then to have such dismal results.

In fact, he described it as "puzzling." I have other words to describe it, but I'll keep them to myself.

We talked about PGD. At length. He was a big proponent. He does feel that we are in the small sample of people for whom it would offer additional benefit. He said he wasn't sure what he would do in our shoes but he thinks he would do PGD if it were him (we asked, as we know he's been down the IVF road himself in his personal life). He wouldn't say if he felt his clinic is better at PGD than our current clinic. He said they should both be pretty good at it. And he said microarray CGH is unproven. "Could be better than PGD, could be worse." He helped us interpret the data from a number of studies that we'd previously been reading as unsupportive of PGD. He pointed out some flaws in the study design of the articles and analytical methods that we hadn't appreciated before, which made the data in support of PGD appear a little more favorable overall. He also said that if we do PGD on a good number of embryos and all are abnormal, that we only have about a 30% chance of having anything turn up normal the time after that. So that was new information.

He spoke highly of Colorado and he spoke highly of our current clinic. Of course he was positive about himself as well.

Ultimately, he said "Because of your experiences and all of the reading and researching you have done, you know more about this field than most OB/GYNs and more than some reproductive specialists." And then he shook his head. He said that if we had come to him hoping for some answers, that we were out of luck, as he had none for us.

"The best I can tell you is that you are doing all the right things. Think of it this way: whatever path you choose - to stay at your clinic, to come to our clinic, or to go to Colorado - all are great choices. All are the RIGHT choice. I can't tell you if a baby will result from any of these paths, but I can tell you that they are all solid paths with no one substantially better than the others."

So no magic bullet, no identification of something that had been overlooked. I guess this shouldn't be surprising. If there is some peace to be found in this consult, it's in this RE's last statement. That we are facing multiple right choices and have done everything in our power to achieve a good outcome. Whatever happens, we've tried our very best. The rest of it is out of our hands.

This RE shook our hands as we left the consult and offered to speak to us by phone if we have any further questions. I wish I could come up with some questions that he would have the answers to.

Mo


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Sunday, April 5, 2009

Sundays of grace #9

1. Having a medical team I really believe in: Over the past decade dealing with first cancer and then infertility, I've unfortunately had more doctors than I would like to count. Almost all of them have been fine, decent clinicians, competent people. But a few of them, including my oncologist and my current RE, are much more than fine, they are really amazing. And I am just so very grateful for this. No one wants to be sick or to go through any of these difficulties. But when you do have to, it makes it so much easier when you have a doctor who is accessible to you, who listens to you with respect, and who truly treats you as a person underneath the diagnosis. In these two important physician relationships, I have found two people who are able to see me in the middle of all of the medical. And for that I am very appreciative.

2. Good drugs after surgery. Having just had stage III endo cleaned out of my abdomen, I am newly aware of how grateful I am for good pain control when it is necessary. It has been great the past few days to rest and let my body start to heal, for my suffering to be reduced because I'm able to take appropriate pain control as necessary for my own comfort.

3. Good friends: People have run the gamut with their help the past few days, just offering to listen when i need to talk, offering to bring some food over because I'm not well enough to leave the house yet, offering to explain which Chi-Square analysis I need to run on a bit of tricky data so I can try to get this dissertation moving. All of these things, in different ways, show the myriad ways my friends demonstrate their love. I am grateful for all of it.

Mo

Friday, April 3, 2009

Laparoscopy/hysteroscopy update

Finally with it enough to post about yesterday's surgery.

First of all, thank you all for writing in with your personal stories and experiences. And Nina, thanks for writing in from the perspective of an OR nurse. My belly button has never been so clean!

The nurse called me in for the surgery a little late, around 12:45. Had me walk into the OR, resign some consents, go over my allergies. Open my mouth for the anesthesiologist ("that's as wide as you can open it?" yup.) Then they hooked up some EKG leads, put a mask on my face and my RE said, " I'll make sure you're ok." That's the last thing I remember.

I woke up in the recovery room to my RE telling me he was surprised to find lots of endometriosis once he got in there. Both on top of and behind my uterus. Ultimately, he classified it as stage 3 endometriosis. He said he cleaned it all out.

There were two stages of recovery. One in a bed and then later on, sitting in a lounge type chair where I was offered something to eat. Mouth was super dry and I was a little nauseated. Lots of urethral pain (presumably from the catheter). But all in all, not so bad.

RE came by again in the second recovery area to go over everything again. Hysteroscopy normal. Moderate endometriosis, which he seemed pretty excited to have discovered. Funny to have all of it because I've never really had anything much in the way of symptoms.

Hoping this will have some positive effect on getting/staying pregnant.

All right, now, back to bed with me. Very, very sleepy.

Mo

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Wednesday, April 1, 2009

Wednesdays with Will - The Mood Ring

(Disclosure: photo is of Will's hand!)


For Mo's last birthday, I bought her a mood ring (it was the faux-gift of a larger present). We were headed on vacation and I thought it would be a fun way to signify that we were finally letting loose a bit. I had forgotten about it until the other day when we were sitting in a diner, a post-meet-with-our-RE ritual we have going on. We try to process what has been discussed and how we want to proceed. In the midst of sipping our coffees, Mo looked at me and said, "But what do you think we should do?"

An honest question, but one I sometimes have a suprisingly difficult time answering. With all of these IVF dilemmas I am caught trying to figure out: 1) What does Mo want to do, 2) What is good for us as a couple, 3) Is there a right thing to do (mixed into this are social norms and expectations)? Somewhere along the line my own emotions must get caught up in this stream of anxiety and subsequently muddled. To complicate matters, it isn't my body that is undergoing the surgery, the daily needle sticking, and the ultrasounds.

For some decisions in life, one person in the relationship can abdicate most of the power without much ill effects - "I trust you, please make a decision that reflects both of our values." Mo and I do this all the time when it comes to things like charity, savings, vacations and the like.
IVF takes both of us to weigh in on choices. Mo needs me and I need her to navigate this river.

Does this happen with you and your spouse? Any suggestions for how to label your own needs, thoughts, desires before they become entangled in the needs of your spouse or the needs of others?
Will

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