I work in health policy. My paid hours are spent thinking about how to improve Oregon's and the U.S. health care system. How to improve quality, expand coverage and yes, lower costs. From that perspective, I have always thought that it made good public policy that insurance does not cover invitro fertilization. It is expensive and for many people with infertility, a last ditch effort for which cheaper and less invasive treatments can be substituted. Adding it as a covered benefit in health insurance, even if it was only used by a few members, would increase premiums for all members. I have held this view even as I went through a round of IVF in 2004 and four rounds in 2007-08. I knew that Chris and I were lucky to have family support (both financial and emotional) as we went through this process, but I did not think much about what this process is like for people who can only afford one $20,000 attempt, or who can not afford it at all.
And then I watched this, by Hannah Wept, Sarah Laughed:
What IF? A Portrait of Infertility from Keiko Zoll on Vimeo.
And I cried. I cried not just because I could relate to the "What IFs" raised in this moving piece, but also because unlike many women in my situation, I never had to worry about whether we could afford to try, or when one round failed, to try again. My family is wonderful and supportive. They are also financially able to help us pay for the multiple rounds of IVF we needed to build our family. I know that not everyone is that lucky, but it wasn't until I watched this video that I really felt the fear that many women go through when facing the knowledge that they have only one very expensive but iffy shot at getting pregnant.
I am sure my mom is reading this and feeling disappointed in me (hi Mom!), but this video changed my mind about insurance funding for IVF. In many European countries, insurance coverage for IVF is paired with limits on the number of embryos that can be transferred. Our last IVF involved the transfer of three embryos and I know that a one-embryo rule could have meant that I didn't get pregnant at all. But from where I sit now, with a complete family that is more than I could have asked for, I think it would be a fair trade to have financial assistance paired with embryo-transfer limits. I got the help I needed. It pains me that money can be the difference between building a family through IVF and not being able to do that.
Monday, May 10, 2010
In which I decide I've been a hypocrital ass
Friday, April 30, 2010
How Babies Are Made
I like to say that when my kids ask how babies are made, I will tell them that when two people love one another very much they find a good doctor and...
Maggie reminded me it is National Infertility Awareness Week. Anyone who has read my blog for a while knows that my three children were conceived with the help of IVF. Chris and I tried to get pregnant (first on our own for over a year, then for the better part of another year with help from specialists), finally conceiving Ada in our first attempt at IVF. I thought I was the poster-child for IVF. Look how easy that was!
After a few years we decided to try for another child, and we tried and tried and tried. It took us a year, and by our final attempt I had given up any hope that it would work. But it did, and we got Mira and Ian out of the deal.
When I first started to realize that we were not going to get pregnant the old-fashioned way I didn't know anyone else who had this kind of trouble. I had several friends who got pregnant practically without trying, and though I have friends who followed me down this rocky path, I did not know about their efforts at the time. Little did I know that this is a common, if unfortunate, situation. Like many others who face infertility, it was not until I started to share our struggle that I heard from others going through it as well. And now I am friends with a number of people - in real life and through blogs - who have gone or are going through infertility, and sharing our struggles means a lot to me.
I have written this before, but knowing that other people have gone through this, that it is not a personal failing on my part, made the process (if not the negative test results) more bearable. Knowing this helped me to write about my efforts to get pregnant and the emotions and expenses involved. My family is "complete" but I still hold the memory of the work it took to get here, and I hope that my words can be some comfort to people who might feel that they are facing infertility alone.
Thursday, December 04, 2008
Of course I read that article
In last Sunday's New York Times magazine, Alex Kuczynski writes about her efforts to have a baby (which included 12 rounds of IVF and finally a gestational surrogate (a woman who was pregnant with the fetus created by Alex's egg and her husband's sperm).
I so wanted to be right there every moment with this story, and for the most part I appreciated the author's candor about her struggles and doubts. A couple of things bugged me about the piece. Since I figure that at least a few of you might share my interest in the piece, I thought I'd write about it.
Several of the photographs in the essay really bugged me. For someone who describes herself as so much wanting to experience parenting, you'd think Kuczynski would have noticed that the picture of her with her child and "baby nurse" might undermine the reader's sense that she is in this whole hog. I admit that if I was rich enough to have a home in New York City, plus others in Southhampton and Idaho, I might have a little live in help too. But maybe including in the picture a uniformed woman standing at attention a few paces from mother and baby was not the wisest choice on the author's part.
This photograph especially disturbed me when I read the part of the article in which Kuczynski complains that people joked with her that by having a surrogate she was skipping out on the hard part of parenting. This leads Kuczynski to worry that she is somehow less of a mother, that she is missing some elemental experience. My first reaction was viceral - as challenging as it can be, labor is NOT the hard part of becoming a parent. Parenting is the hard part. But then the picture flashed before me, and I thought maybe it isn't the hard part if you are surrounded by help all the time.
And the cover photo? Even going into the article with a good faith effort to like the author, just looking at the picture creeped me a out a bit. Kuczynski writes about how wonderful her surrogate is, how warm and thoughtful (the surrogate brought Kuczynski a gift when the former went into labor!). But in the picture Kuczynski looks anything but connected to the woman. I could not help but wonder what the author was thinking when she okayed that cold and creepy picture. I suppose it is possible that she did not take part in this editorial decision, but given her stature in the profession, you'd think she'd get a little say about it.
I feel a little weird that my complaints about the article are actually complaints about the pictures that accompany it. Talking to my mother, her response was a little different. She didn't like the pictures either, but she also did not like the author. She was annoyed by how self-absorbed Kuczynski appeared. Somehow this bothered me less, maybe because as a blogger self-absorption is my bread and butter. But blogging aside, I could relate to how all-consuming the desire to become a parent and the stress associated with being repeatedly thwarted.
I should cut Kuczynski a little slack, I suppose. I do appreciate how open she was about what she went through. I don't think she is a hero, but I am sympathetic to her five years of infertility hell. In any case, it is an interesting read for anyone interested in this small but growing corner of the assisted fertility world.
Updated: As Karen noted, a lot of people had a lot to say about this article. Check out the comments (404 as of Thursday afternoon) here.
Also - interesting articles on related topics:
Nobody Loves My $20,000 Baby by Daniel Nester
Commentary on the Kuczynski piece by Melissa Ford (on Blogher)
Monday, October 27, 2008
How to be Helpful
While chatting with an old friend last week, we talked about the ways in which people say inadvertently rude things. We were specifically talking about fertility and pregnancy, and discussed the ways people can be well meaning but still say the wrong thing. (Last time I was pregnant, several times I had one person tell me how big I looked, just to have another say I looked small. On the same day.)
When I was pregnant with Ada, the response was overwhelmingly positive. Now that I am telling people I am carrying twins, I have heard more versions of "boy is your life over" comments. I'd like to state for the record that this is NOT HELPFUL. I know that the next few years are going to be challenging in ways I can and can not imagine. I am still reeling a bit from the news that I will be a mother of three. Hearing that my life is going to change for the worse is just not useful.
Almost every parent will acknowledge that having an infant is a life-changing event, and that those changes are not uniformly positive. However, something about the rarity of twins or the fear it causes in other people is enough to cause otherwise polite people to try to scare the crap out of me.
Thursday, October 23, 2008
7 Thoughts Since Wednesday at 10:30 AM
- Post the rules on your blog.
- Write 7 random things about yourself.
- Tag
7peoplethe one person you think might not be annoyed about it.
- Pass on the tag.
2) I hope my close pal's future daughter doesn't mind having two best friends.
3) Now that gas prices are going back down will all the good deals on mini-vans be disappearing?
4) I am really not going to fit into any clothes in a few months.
5) Maybe leashes for children aren't so horrible after all.
6) How funny it is that once I come to terms with not having a second baby, I find out that I will have a third too. Not funny ha ha, but funny, am I going to be tired.
7) I'd better start paying attention to those twin blogs. I think Sarah drinks more than I do. That could be important.
I tag Rebecca, who is a few weeks ahead of me in her twin pregnancy. And anyone, pregnant or not, who wants to do this (email me or comment and I will link to you).
Wednesday, October 22, 2008
Making a List
I know I have a while yet to worry about this, but I am not crazy about any of these names.*
*yes, that is a sneaky way of saying the OB scan showed two little fetuses with two strong heartbeats. Oh my.
Thursday, October 09, 2008
Considering maybe being a little excited, maybe
People keep asking if I am excited. Thrilled. Very very happy.
I feel a little weird saying, "um, not yet."
I do expect to get excited, but I remember this caution from four years ago. Sure, I got a positive pregnancy test, but what about the follow up? Ok, today I got a good follow up test, but what will I see at the ultrasound in a couple of weeks? What will the tests say about genetic mutations or other deformities? I didn't really feel comfortable with the idea that the pregnancy was for real until about 14 weeks. This time I hope it will be a little easier to relax, but I am still a litle stunned.
After a year of failed attempts, I am having a hard time wrapping my mind around success. I am able to wrap my head around the need to hurry, however. Knowing that in a few weeks I will be exhausted, I have a mental list of all the things I need to get accomplished before then. I planted bulbs and transplanted some of the plants that were unhappy this year. I still have a bunch of fall gardening to do, including getting in a cover crop in the veggie beds. I need to give the guest room a good scrub down and reorganization. I need to tackle the headboard I have been thinking about making. There is so much to do, but all I want to do is sit on the couch and think about how this could possibly be true.
Yes, I think I will be excited, once I get over the shock. For now I am relying on how excited my friends and family are; their responses are lifting me out of stillness. I am working on it, but for now forgive me if I look a bit dazed when you ask if I am excited. I have gotten what I wanted, I just can't believe it is true.
Monday, October 06, 2008
I Had All These Plans
In the past two weeks, I considered and re-considered what I would write about today. I have a print out of the three embryos, seconds after they were returned to me. (My doctor was so proud of how well they showed up that he gave us a copy to keep. Commemorative, if there ended up being something to commemorate. I thought I might scan the image and post it here, with the circles and arrow and exclamation points.
I thought about the metaphors I could use, the words I could write. Two Thursdays ago I started to be convinced I was pregnant. Thursday evening I had an intense and prolonged hot flash. Foolishly, I googled "implantation hot flash" and found hundreds of women who described having experienced such an event. But really, google any combination of words and you'll get something you want or fear to see.
A few days later, rational thought returned and I was not sure whether I would be pregnant or not. By the weekend I was positive I wasn't pregnant. Two days of spotting and I was sure how this would end. I knew my body was primed for a menstrual cycle, but I would have to wait until Monday to be told to stop the projesterone, so that my body could resume its regular workings.
All this is to say that I am not psychic. As much as I would have liked to, I had no real information about my status. Until 12:30, when I called my voicemail to get a message from Jill. "I've got good news" she said.
I had all these plans about how I would write about this, and how would deal with another failed cycle. But plans change, and I am happy to report that instead of dealing with loss, I am dazedly counting forward to another summer birth.
Sunday, September 28, 2008
Waiting is Half the Battle?
If my personal history is any guide, this is the day on which I think to myself, "this whole waiting is no big deal, I can wait another week for a blood test, no problem." That would make Monday the day I think, "There is no way I can wait another week, this waiting is killing me!"
Sunday, September 21, 2008
Monday is the New Day of Rest
Of the 9 eggs retrieved, 8 were mature. (So much for that high tech ultrasound.) Four of those were successfully inseminated. Monday I will find out whether any or all of them look good after 3 days. I'll take what I can get.
I'll be resting today, and thinking about how these can be pictures of the same child, taken just one over year apart:
Friday, September 19, 2008
3/4 Dozen
Friday morning I had an egg retrieval. It went about as well as possible - they got 9 eggs.
Health policy wonk that I am, I had an extensive conversation with the Anesthesiologist about his native Sweden's health care system. I then remained awake for the procedure (a first) which was both fascinating and uncomfortable. Turns out both Chris and I were trying to decipher what the doctor, nurse and lab tech were telling one another as they worked.
This afternoon Jill called to let me know that if for some reason none of the eggs work out, we can use our frozen ones. This is something I had asked my doctor about earlier this week, but I think he was not clear what I was asking, and I got a confusing answer about exogenous estrogen. (Now there's something to say five times fast: exogenous estrogen, exogenous estrogen, exogenous extra... oh crap.)
So, we are on for a Monday transfer, and if I can get it together I might actually feel hopeful about it.
Since earlier this week when I was told there were three eggs and the cycle might be cancelled, I have assumed the worst. This not-entirely effective self-protective measure is one I slip into easily. Several people have recently suggested I could be more hopeful, including an old friend who noted that I could put off worrying for a bit. The worry will be there later. He has a point, and while I won't be counting any chickens yet, I can certainly give the Eeyore routine a rest for a bit.
In the mean time I have a brunch, a wedding and a birthday party to look forward to. And delicious mozzarella-tomato sandwiches for dinner. That alone is enough to make me do a happy little jig.
Thursday, September 18, 2008
An Update, Mostly to Torture Myself
On Monday things did not look good. The docs had me come in Tuesday, which confirmed the not-good-newsness. Wednesday didn't improve the news, but at least it clarified my options.
Each time I do this, something new is goes poorly. In January, my body struggled to overcome the ganirelix, and I endured a record breaking 17 day stimulation. (In general, the antagonist protocol is thought to be smoother, but not for me.) In March my response was much better with the lupron, so good that I decided to have only two embryos implanted instead of three. In retrospect it was the wrong choice, but then things could have turned out the same way with three.
Now, after several months off, my body is not cooperating. It looks like I will cough up three eggs, or at least I hope I will. I had a long talk with my lead doctor today, and this ever optimistic man said that if I wanted to go forward with a retrieval with only 3 eggs, he would support it. (Normally they like to see 6 eggs for a retrieval.) So we are going forward, knowing:
- the cycle could fail because the three eggs that look good on an ultrasound turn out to be not so great once they are outside my ovaries;
- the cycle could fail because none of the eggs is successfully inseminated; or
- the cycle could fail because not one of the embryos makes it the three days to 8 cell stage.
I know that there are so many things that could go wrong. I assume something will go wrong. Partially this is a rational assessment, but it is also self-protective. I need to help myself from having the hope that supports me just long enough to allow me to feel crushed by the negative blood test.
I am trying to hold on how I felt earlier this summer, when I knew it would be okay to have an only child. I am not a superstitious person, and I do not search my surroundings for signs or secret meanings. Despite this I can not help but notice that in the past few weeks I have reconnected with two old friends, both only children. I have resisted the urge to ask them what it was like to grow up an only, what it is like now. What that would tell me that would help me now, I don't know. It is not important, I think. Rather than try to talk myself into why any outcome is going to be fine, I just need to get through the next few weeks. I can mourn when the time comes, but for now I just need to hold on.
Tonight I took the medicine that will induce ovulation in 36 hours.
Tomorrow I do nothing. (Ok, not nothing, but after "don't blog about work" my second rule might be "don't blog about enemas".)
Friday morning I go to the doctor for the egg retrieval. I don't have much hope, but of course I have hope. Otherwise I'd just walk away and wait for the doctors to refund me the money we paid up-front.
Wish me luck. Just don't tell me you are sure it will work, please.
Tuesday, September 16, 2008
The real problem with IVF, part 3
On day 7 of the stimulation meds I lost the ability to function.
The previous weekend was fantastic - camping with Ada, Chris and Juniper, and the start of the week was fine. I even made it through three evening work events last week, all of which were timed to require injections in assorted bathroom of varying cleanliness. Amazingly, only one of those bathroom visits involved half-explaining myself to a stranger. The stranger in question, who found me with needles and vials in the bathroom at the Chinese Classical Gardens, was completely unfazed and in fact slowed my progress by talking my ear off about the annoyance of having to shlep medications around (she has glaucoma).
By Friday, I was worn out from a lack of down-time and from medication side effects. By Sunday I wanted to run away from home, or at least flee Ada's unexplained crabbiness for a few hours. Instead I suffered through the nursery school picnic and took pictures of Ada enjoying the merry-go-round.
Mega-doses of hormones strip away my usual protections. There is nothing between me and the world, so I feel annoyed and frustrated every easily. Unfortunately, this hyper-emotional state makes me to want to blurt out to everyone that I AM TAKING LOTS OF HORMONES AND AM NOT TOO HAPPY ABOUT IT. Luckily for myself and others, I am mostly able to keep the shouting to a minimum.
I decided to reserve judgment about how this cycle is going until I got the day 10 results Monday afternoon. As usual, my body has responded a bit slowly to the meds, but from the day 7 results it didn't seem like things were going any slower than in the past. I thought the main thing was just to deal with my over-the-top response to normal frustrations and annoyances.
Well, until Monday afternoon, when Jill called. I love Jill, who broadcasts her news even before she tells you how sucky it is. Her tone of voice tells all, and I knew from her hello that things were not great. My estrogen is fine, but (as I already knew from the scan) I don't have a lot of eggs. As in - 3 or maybe 4 decent sized ones. This is a new wrinkle.
I really don't know how to feel. I mean, I feel shitty, but in a larger way, I don't know how to feel. I have not felt hopeful about this cycle from the get-go. Maybe it is the almost-year of failed cycles behind me. Maybe it is a sense that if it was gong to happen it would have last time when I felt so good about it.
I spent the past few months coming to terms with the idea of not having another child. But coming to terms with it, even thinking there are good things about having only one, it makes it hard to get my hopes up for this round. It is hard to hand over the credit card, repeatedly plunge needles into my belly, suffer the mental and physical annoyances, all while smiling at the nurses and making small talk about shoes or the weather. It was all I could do not to grab the doctor this morning and demand that she agree that this sucks.
Our nanny and friend Juniper has been asking when she should start sending the positive energy our way. Today I told her I needed it. I need someone else to be positive for me. I am not feeling it myself, and nothing I am hearing from Chris screams hope and excitement, or even whispers that the outcome matters much to him, frankly.
I go back in Tuesday morning, and in the afternoon I will hear whether the few eggs I do have will get plucked Thursday or Friday. I find myself hoping that they'll have me hold out for one more day, but I am not sure why. An extra day is just that, one more day to hope and fear and make bargains with my body and the 8 celled embryos that will soon inhabit it. Despite the possibility that one or two more eggs will have a chance to mature, an extra day of hoping is just what I don't want. I can't help but hope for it anyway.
Wednesday, September 10, 2008
Crossing My Fingers
Please join me in hoping for a positive test for my IVF-blog pal Penny, as she goes in for her blood test today.
I have never been a big fan of blogs solely focused on infertility. Maybe it is that the issue is too close to my heart for me to read regularly about this particular pain, or maybe I just have not connected with the writing of other infertility bloggers. Penny's blog Incompl-te is an extraordinary exception. Throughout her round of IVF, she has written clearly and with good humor about the milestones, emotions and small details that make up this process. As crazy as it sounds, I have looked forward to her daily posts, which are written in a tongue-in-cheek "what to expect" style.
Penny, I wish you the best and have my fingers crossed for a good outcome. Whatever the results, know that I care about you and hope for many good things for you and your family.
Monday, September 08, 2008
The real problem with IVF, part 2
Friday at the grocery store I ran into a friend of Chris's. His mother recently died, after a brief battle with ALS (Lou Gerhig's Disease). I had talked to this guy at the start of the summer, and offered some support based in my experience with this disease. (My grandmother had it.)
I walked over to tell this man how sorry I am for his loss. We talked for a bit, and I found myself welling up. He (a man of good stoic Norwegian stock) remained calm, while I was close to sobbing. And I went over to console him.
Fucking hormones.
Tuesday, August 26, 2008
Side Effects
I may in fact be losing my mind.
Yesterday I was working at home so that I could get to my weekly acupuncture appointment. (There is some evidence it can improve the success rate for IVF.) My computer dinged at me, reminding me to head to my appointment. I kept working on the document I wanted to get out before I left. That done, I hopped in the shower, pulled on some clothes and ran out the door.
Congratulating myself for being a few minutes early, I walked into the office. The very friendly secretary greeted me warmly, and said "we were expecting you at 9."
WHAT? I looked down at my blackberry, and yes indeed, my appointment was for 9, not 10 am. What is wrong with me? Why did the 8:45 reminder not ring any bells? Fuck.
I started to cry, and the secretary tried to find me another appointment this week. No luck, my doctor is out on Friday and booked up today and tomorrow. FUCK. The loss of a single appointment is itself not a huge deal, I have a few more appointments scheduled before all this is done. But I was inconsolable. I could not help but flash to to something I read the other day that suggested Lupron use could be linked to memory loss and other problems. Not that I have noticed an increase in forgetfulness (and this stupidity is not exactly about memory), but it triggers for me a fear that all this hormone injecting and other doping could have long-term bad effects.
During Sunday dinner I told friends I was not feeling worried about the IVF not working, but that this meant I also was not feeling excited. Some measure of anticipation feels required - some kind of mind over matter nonsense that I can't stop myself from thinking must be important. I am still not excited, but now I am scared. Not scared that it will not work, but scared that the process may scar me in some unanticipated and irretrievable way.
All this feels like a big response to a missed appointment. The reaction would have been there without this to trigger it; something else would have brought it up. Now I feel all jangly and out of sorts.
Wednesday, August 20, 2008
An hour after, a week before
I took my first lupron an hour ago. Already I have a little headache behind my nose. Not too strong, but charming none the less.
More charming is the conversation I had with Ada today. I told her that in about a week we are going to Canada to visit some friends. I told her about the daughter and son, about the mama and papa.
Ada: are we going now?
Me: in a few days.
Ada: after nap?
Me: more like in a week.
Ada: I want to see my friends now!
Mo and family, Ada is already excited for the visit. Now we just have to work on what "more than a week" means.
Thursday, August 14, 2008
Special Delivery
This arrived today:
Yes folks, that is a $4,500 package. It showed up this morning, and I stowed the various vials and containers in the fridge and on counters. Now that Ada can open the refrigerator I am a bit more cautious about where I put those meds.
Turns out I had mis-calculated the cycle dates when I was estimating on my own, which means that we CAN go to Canada for Labor Day. (Or should I type Labour Day?) Yay for us! Hopefully the Lupron headache will be controllable this time. It helps when I identify that it is a Lupron headache and don't fruitlessly try to medicate with ever more caffeine.
In other health care news, the Onion Radio News has a good piece up: Republican Enjoys Paying Huge Health Insurance Premiums. Saying I got this from one of my bosses does not violate my "don't blog about work" rule, I suppose.
In case you think you might need your eyes checked, see this first. (found at design for mankind)
And now for mental health: I am off to the beach with Chris' family. No doubt to get my ass kicked in Settlers of Catan. But I'm the king of Boggle. See you next week.
Thursday, July 31, 2008
The real problem with IVF
It is the fucking scheduling. After our most recent round I wanted to go again as soon as possible. However, my travel schedule was going to be a problem. In late June I was scheduled to fly to Boston for a conference. I really wanted to go and did not want a maybe-event to keep me home. I put off the next cycle for a month. When my period started I consulted the calendar and found that starting the process would mean cancelling my plans for San Francisco and interrupting my vacation at the beach with several early morning drives to visit my Portland doctor. So again I put it off.
Now I am waiting for the go-ahead to start again. Once I start bleeding I can begin the two weeks of birth control pills, followed by a couple of weeks of follicle stimulating drugs and the paired joys of egg retrieval and embryo transfer.
So what's the problem? The timing. One of my favorite bloggers invited my family up to see hers on Labor Day weekend. (and to hear Neko Case perform, one of our shared enthusiasms) Once again, I am looking at the calendar. A month from now looks like exactly when I can't be away. Crap.
I have put off this round of IVF twice. I can not wait any longer. I hope Mother-Woman and her family will forgive my indecisive rambling and back and forth emails (I'd love to visit, I don't know if I can come, yes we'll be there! No wait…). Somehow I think they will. In any case, the bug is in my ear, and I will see them soon. If the IVF works, I will know I made the right decision. If it fails? Probably still the right decision, but it will sting a little more.
Thanks for your patience, Mo. You are welcome here any time.
Friday, May 30, 2008
I need to get over it, I can't get over it
This is really hard.
I am crying every day, something I am familiar with but have been spared for a while.
I am distracted, not by sadness that this round did not work, but by the creeping realization that it likely won't ever work. I know I have said that it is different now that I have Ada, but it is still an ache I can't lose.
It has only been a few weeks and it will get better. I know it will get better. When will it get better?
A friend stopped by and we celebrated his good news - a baby girl. Chris and I are thrilled for our friends and very excited to meet the new baby. Our friend left, and moments later returned to express his sadness at our bad news. I was an immediate puddle, appreciative of his love and concern, but horrified that I could not stop crying.
I cry at work and then turn around to talk about health reform or political gossip, pretending my nose is not running and my eyes are not red. I cry when people ask me about it, but annoyed when they don't.
My co-worker who is in treatment for cancer came in to the office while I was still red-eyed and soggy. How can I be sad about my life? I recently talked to two good friends who have fertility issues of their own, both related to past or current medical conditions. How can I be sad about my life? What kind of asshole am I?