Adventures in making and raising our test-tube babies

Monday, March 31, 2008

Hope Strings Eternal


As my brother, David, says, his car is like most people: it has a good side and a bad side. In his car's case, the bad side is the right side. It has a huge scrape. Hope is like David's car but more extreme. It has some major pros and cons.

Hope is also like pizza. James says pizza is a hideous bitch goddess: so bad and yet so good.

Hope is bad because it keeps us from moving on. It prolongs our grief month after month. Every time we let our wounds heal even a little bit, we get a wisp of hope that pulls us back into the yearning, the struggle. It never gives us a break! Two months ago I started crying when James said that maybe I would be pregnant this summer, and that I would be limited to "supervising" his heavy-duty landscaping efforts. It was such a vivid picture. Hope poked through the dark paving stones of my heart and blossomed like a little flower through the cracks. It hurt.

But overall, hope has a good reputation. Last night I was talking to Dad, telling him about how we've started up this IVF cycle and I've started taking my daily shots. He asked if I found that energizing. First I thought he was crazy, because there is nothing worse than a syringe-full of hormones for DE-energizing a woman. But then I realized that I was indeed energized. Giving myself shots and going to doctor's appointments makes me feel that I'm taking the fight into my own hands. It gives me something to do to counteract the powerlessness I usually have to slog through. So yes, I feel energized. For a change, I feel hopeful. That's one thing that IVF offers to the hopeless: hope.

I had been mulling that over this morning as I browsed through some handmade crafts online. A woman who spins and dyes her own yarn (http://www.jojocheng.etsy.com/) was advertising different colored skeins named after different virtues. The brownish pink one that caught my eye was called "HOPE," and as I flipped through "GENEROSITY" and "LOVE," I decided that HOPE was my favorite. I tried to get back to it in the online catalog, but it was gone. Someone must have bought it! Damn! I wrote her an email saying that if she made another skein like it, I'd like to buy it. She immediately responded that a computer glitch had just temporarily removed HOPE from the list. It hadn't been snatched up by another buyer.
I lost HOPE, and then it returned! How can one refuse a metaphor like that? I placed my order.

I promise I will make something really pretty with it. If hope is going to keep stringing me along, I might as well knit.

Friday, March 28, 2008

Quick Note on Sadness and Happiness

From Mom:

"X is reading your blog and worrying a lot about you. She was worried that it might make you sad to see her and Y so happy. I said of course not, that everyone loved to see them happy."

Don't worry, X. I love seeing happy people, especially cute happy people. As long as they're not pregnant. And if you're pregnant, well, at least you're cute.

Love, your step-sister.

No Fair

I hate essays that start with a word’s dictionary definition, so I won’t start that way. But just know that the word is “fair,” and I did look it up.

A few nights ago I couldn’t sleep. I tossed and turned all night, and in my half-waking state I had some deep thoughts about fairness. Unfortunately I didn’t write them down, and the only part I remember now is my profound observation that “fair” sounds like “fairy” and “ferry.” So I’ll try to recreate my bursts of sleepy wisdom for this blog now.

You’ll be glad to know that my friend Ashley’s one fertilized egg developed into a healthy embryo so it was transferred back into her the other day and she is resting comfortably with her doggies on the couch for a few days. (See her blog, whose link is at left). We’re all feeling a lot better now that the little one is brewing in her. This could really work, you know?

But a few days ago, when she first found out that there was only one possible embryo, we were not feeling as good. In fact, it made me angry. Because Ashley and her husband are so wonderful, and they have tried soooo hard, and it’s just not FAIR that it’s proving so difficult to get pregnant. No fair.

So what makes me think it should be fair? First of all, what’s fair? If it’s systems dispassionately following their established order, then that would seem fair. Certainly not every member of every species reproduces. It’s natural selection, and just because we think particular people should have kids, that doesn’t mean science does - or cares. A lot of evolutionary changes happen by accident, not because of some glaring need. Frogs that look like tree bark were just lucky, not better. Natural systems following natural processes with seemingly random effects, well, that is fair. There’s no particular prejudice against Ashley and Lee.

But when we pout, “no fair!” we are talking about equality and agency. First of all, we need to believe that everyone is treated the same and has the same opportunities. It’s like the U.S. Constitutional principals of equal justice and equal rights. Everyone is supposedly equal under the law, even if they are very different individuals. They can expect the same rights and privileges just by virtue of being citizens. (There’s another essay here, but I’ll leave that to Barack). When we think about fairness in fertility, we get very angry when people like Ashley have an awful time trying to conceive. Everyone should have this equal opportunity!

Yeah. Unfortunately, equal rights are only part of equality. Then there’s equal nature: what actually happens. Legally and socially, Ashley has had the opportunity to reproduce. She’s had lots of chances. It’s something about biology that has kept it from happening. THAT is where unfairness comes in!

Where’s the causality? Where’s the pattern? Why doesn’t Cause A produce Result B for her like it does for everybody else? Having the predictable, causal link broken is absolutely enfuriating. And terrifying. We as humans just can’t stand it.

My long relationship with psychology has taught me that people like to make sense of things, to assign reasons for random occurrences. That’s why children of divorce think that something they did caused their parents to not get along. It’s why we come up with superstitions like crossing our fingers -- as if we could really control anything at all with that movement. But who doesn’t cross their fingers, just in case? It makes us more comfortable to have reasons, causes, agency.

One popular solution for making sense of a random world is to trust that God has made things happen according to His own inscrutable plan. That gives us everything: a plan, a fair (if “mysterious”) arbiter, and results that somehow fit both the plan and our own deserving. It gives us a role in shaping our lives: by being good Christians. But while I’ve always wanted to believe in a God controlling the minute twists and turns of individual lives, I’ve never been convinced. So that still leaves me looking for answers. And fairness. And control.

And so I land where all infertile women land. Asking what we did wrong. We start thinking about what we thought were our strengths, and doubting ourselves. I thought I would be a good mother. I thought I would love a baby enough. I thought I was smart enough. I thought I could have taught my children many languages, and made them good citizens of the world. I thought I had created a stable, loving family that they could be born into. I thought that once I met and married this wonderful, wonderful husband of mine, that things would fall into place. I thought I deserved to be a mother.

Because you know I’m not talking about Ashley. I’m talking about myself.

James and I have been diagnosed with “unexplained fertility,” and the only thing my human brain can do is start to making up reasons. Why us? I guess because we’re just not good enough. Because we don't deserve it.

And if that's not it,

then it’s just not fair.

Wednesday, March 26, 2008

In It Together, Like It or Not

I felt bad that the last post might be too sad, and it might make people feel even worse about everything. So in the interest of soothing feelings (my own and yours), I’ve come up with some ideas for my friends who are expectant or new mothers. Maybe these will help.

  • When you start to tell people you’re pregnant, tell me too. It’s easier to hear it from you. Just also remember that I’m sad, and tell me that you remember.
  • Send me your babies’ birth announcements, and know that I’ll be thrilled to meet them and get to know them, but maybe not right away.
  • Invite me to your baby showers, and understand if I can’t go.
  • Write me emails or notes to remind me you care about me. And please know that I love you back, even if I can’t respond. I’ll get back to you when I can.
  • Talking on the phone is sometimes hard, so writing is better. If I have time, sometimes I can talk myself out of feeling sad and remember the reasons I’m happy for you.
  • If you invite me out, warn me if pregnant women or new babies are going to be there so I can steady myself or decline.
  • Please don’t feel rejected if I can’t see you or talk to you for the time being. It’s necessary sadness mitigation.

Most of all, please don’t worry that you’ve done something wrong, hurt me, or offended me. I had so many dear friends apologize after I wrote my “what not to say” post. I didn’t mean to make YOU feel bad! That’s way too many people feeling bad! Having suggested adoption was really nice and has a lot of merit to it. I really am thinking about it. Not wanting to tell me that you were pregnant was very thoughtful. That actually does make it easier on me, until I find out. I know that almost everything that has been said to me has been meant well. I know that.

I’m writing this blog because I feel badly about the way I’ve been feeling, badly about shrugging off your overtures, badly that you might be thinking that I don’t like you any more. I want you to know there’s a reason behind the way I’m acting; I’m not just selfish and petty. As I figure out the nuances of this disease, I want to let you know about it. Because even though nobody talks about it, it’s really common and it’s usually devastating. It creates such vast rifts and stifling alienation. At least if we can talk about it, we’ll still be in it together.

By the way, I found a good discussion about this on a "Let's Talk Babies" board. See the letter at the bottom of the page (scroll down) at this link: http://www.thebabycorner.com/boards/showthread.php?t=233285

It's All Connected

When I had my first pelvic exam in college for basic gynecological wellness, the doctor manhandled my internal organs in such a way that my whole abdomen seized up in one big cramp. I moaned. "Cramps, huh?" he asked. "Well, it's all connected," he explained, without much sympathy. What he meant was that if you start messing with one piece of the reproductive system, all the other pieces are affected, and then everything hurts.

It turns out to be a damned good metaphor.

Today I had a "procedure" -- meaning that if they had not been able to weasel their way into my body through naturally-occurring openings, they'd have to cut me open and call it "surgery." I should have known trouble was on its way when I'd seen a nurse carrying a tray piled high with sterilized specula through the waiting room. In a few minutes in my little curtained exam room, the doctor plunged into me after the speculum with some soap, a few tubes and pokers, and a picture-taking ultrasound wand. She was just getting the lay of the land so they'd know the sizes of instruments they'd need later on, and the angles they'd have to approach my different lady-bits from to get good results when they actually do the IVF.

It has taken me two and a half hours to recover from the ensuing cramp. In fact, I got to use the "health room" in my office for the first time. It is like the school nurse's office minus the school nurse. I went in and shut the door and lay down on the cot, waiting for my Advil to kick in. And my mind wandered back, halfway through life. Eighteen years ago, minus two weeks, I was lying in the school nurse's office in the same position, doing the same thing. I had just thrown up from the pain of my menstrual cramps, and had barely made it to the infirmary. Because I was one day shy of being an adult, I had to get permission to go home. Today, a month and a day shy of my 36th birthday, I wondered if I needed permission to go home this time.

It's all connected, you see.

What do 1990 and 2008 have in common? Pain.
Same with the tip of the cervix and the far ends of the ovaries.
And the fertile days of teenagerdom, and this morning when I sat in a room full of late-thirties career women, nicely dressed with good handbags and sad eyes. One of them was crying. I'm surprised to say it wasn't even me.

My psyche is sore. The pain that has taken over my life has morphed into something emotional. It has changed who I am and the way I relate to things.

I hugged the crying woman in the lobby. I told her I felt the same way she did. In a way I'm still the same old friendly Kay, making friends with everybody, trying to comfort them. I immediately understand what they mean, even if it's not what they say. I relate to them in a matter of seconds.

But in some ways, my tolerance and kindness have begun to fail me. Lots of normal interactions with good people hurt. Everything smarts, even if it was meant well. Sometimes I am so sore that I have to recoil from my friends and loved ones, even though I miss them and even though they only want to comfort me.

The main reason I started this blog is that I want to tell you, Karen, and you, Phoebe, and you, Betsy and Jessica, and you, Leigh, Leyla, Carolynn, that I'm sorry I'm not myself. There are more of you in this category that I won't name, and more yet who will be soon. I miss you so much! But babies and pregnancies hurt me as much as the specula. I double over in pain and need to go home, get under the covers, wait for the Advil. It isn't me -- I know it's not me. You know I've always loved you! It's my reproductive system, from my lady bits to my brain. If you touch one part, the whole rest of it becomes inflamed. It cramps up so tight that I want to throw up, I think my body may never right itself, I fear I'll never get a full breath again. It just hurts. I'm afraid my soul will fall out. I'm afraid it has.

And that's why I have to take advantage of my few moments of fortitude to call you or email. It's why I can't come to showers, can't always be available for dinner. It's why I have to take a leave of absence from the friendships that mean so much to me. It's why I can't spend much time around the babies I so desperately want to get to know, whom I want to watch grow up every day, whose births I have waited for and looked forward to since I met their parents.

It's why the quarantine. Because it's all connected and I just can't get free. Not right now.

Tuesday, March 25, 2008

The Devil is in the Details

"Is Evolution God's Creation?" was the catchy saying that a pastor friend arranged, letter by letter, on her church's front billboard. Within hours, someone took down the letters in a huff and reported the incident. This person was surprised to learn that her very own pastor had been the one to make the blasphemous suggestion.

The nitty gritty of trying to make a baby could lead you to believe in evolution or creation or both. There are so many details involved, that it is absolutely a miracle when they all come together and form a normal baby. An impossible number of evolutionary accidents had to happen to make mammals able to reproduce the way they do. At the same time, with billions of variables at stake every time two people try (or don't try) to conceive, how could anyone expect evolution not to happen?

Whichever way you look at it, as my friend Jeff's mom (a nurse) says from her medical-scientific standpoint, every time a baby is born, it's a miracle.

What we learn about human reproduction in school barely gets us past giggling. But beyond the boy-and-girl-like-each-other part, let me tell you some things you might not know. Hunker down. These are some serious details.

There are only about 36 hours per month that a woman can get pregnant. The sperm can either be there waiting for the egg's debut (they can last 5 days), or they can show up to the party within the next day and still have a shot at the old gal. But if they miss her coming out party entirely, they have missed their chance for the month. The reason women take their temperature when they're trying to conceive is that their bodies run slightly hotter when the party is going on. Maybe that's why they say certain species are "in heat" when they're ovulating. Hot to trot.

The sperm have a deadly gauntlet to run before they can get to the egg. There are between 20 million and 200 million sperm in any given "batch," and every one of them is needed; 11 million seriously isn't enough. They have to swim up the birth canal, using it to slough off all the extra moisture and material in the semen. Only the actual sperm cells themselves are allowed through the cervix into the uterus. If any of the extra stuff comes with them, it could make for a life-threatening infection. To make matters worse, some women have anti-sperm antibodies in their system that kill off any boys that come into their territory. Talk about a hostile environment for conception! A blood test can detect that condition.

In the meantime, ever since her period (where last month's uterus blood is tossed out, sometimes with a baby in that bathwater -- oops), the woman's ovaries have been preparing an egg for her. One or more follicles, bags of fluid that contain fluid and incubate the egg, grow on the ovaries. Or if she's on fertility treatments, medicine might have induced her to make ten, twenty, or even thirty follicles. The woman's pituitary gland or doctor, two entities that control her hormones, pumps the woman's system full of a follicle-stimulating hormone so that follicle(s) get nice and plump, preferably to about 2 or 3 centimeters in diameter. Imagine a grape, or if you're going through fertility treatments, imagine a bunch of grapes. Imagine the woman trying to fit into her normal jeans.

In a normal woman's body, the single egg will be released when it is at the perfect stage of ripeness. A doctor has to anticipate when the stimulated multiple eggs are large and mature enough to fertilize, but not so old as to be post-mature, or so big as to hyperstimulate (could lead to organ failure in a woman's body, and maybe her death). So this period of time involves a TON of "monitoring" during the IVF cycle. I'd go in to the doctor's every other day, and then every day. They would use a transvaginal ultrasound wand to get a good picture of the follicle sacs and what the uterine lining looked like. They'd take a blood test to see how my hormones were doing. Every afternoon the nurse called me to tell me how much of what medicine to take that night. She would adjust the hormone dosages depending on what my body had done overnight. Sometimes I took four injections, in the stomach and/or rear end, in a single night. James administered them like a champ. And he didn't like it.

So back to the biology. When the egg looks good, at about 14 days, a different hormone tells the woman's ovaries to let loose, and the egg goes spinning through the fallopian tubes, a gossamer-like silky hose, where it may or may not meet a viable sperm. If the woman is going through IVF, the doctor will have stuck a needle into her ovaries right before ovulation happens, to suck up the mature eggs while they're still findable. If they've already gone swimming in the fallopian tubes they're lost for ever. If the uterus still has a live sperm in it, and the sperm happens to make it to the right spot, and it has the right shape to be able to nuzzle his way through the microscopic egg shell, well, magic.

If the woman has been going to a bad or unethical fertility doctor, he might have helped grow a carton-full of eggs and then let them loose on a bunch of sperm -- through artificial insemination or through regular means -- while they're all still free in the uterus. That's how you get octuplets or more. A more responsible doctor will insist that either you fertilize the eggs outside the body so you can control how many go back in, or will make sure your uterus takes in no viable sperm that month. They talk about the "risk" of twins. As a twin I am offended. But multiple births pose a huge risk to mother and babies alike. I recently saw a photo of twin boys born at 22 weeks - halfway through a normal gestation. Their heartbroken mom went into early labor. The boys in their tiny stocking caps were right at the border between fetus and recognizable child. Heart breaking. They didn't make it. Their mom did, but boy, does she grieve.

So anyway, if a sperm and egg surmount the zillions of obstacles and actually get together, that's just the beginning. Fertilization is a challenge. The sperm has to have the right shape and get there on a timely basis to get through the egg wall. If a doctor is involved, the sperm will be given the best possible chance by going through a "wash" before they get to do their thing. The semen goes into a chemical bath and gets spun on a centrifuge to separate the live sperm from the dead or malformed sperm, along with all the other juices and germs of the semen mixture. Perhaps this leads to babies with inner ear/balance problems, or just dizzy blondes.

Once they have the sperm, in the laboratory, embryologists often use a technique called ICSI, which means intracytoplasmic sperm injection. That means you pay more for your IVF. It also means the lab technician makes a tiny cut in the microscopic egg wall and shoves the newly-washed sperm in. It just gives the little guy a better chance of getting in. But the better chance isn't all that great. If the egg wasn't a good egg -- and that happens all the time with human cells, where they just aren't going to be viable -- the egg would not have been very receptive to letting the sperm in anyway. So ICSI just helps a sperm get into an inviable egg. Big whoop. Nothing happens. The embryo doesn't survive. But sometimes the embryo does survive. That's what we're always pulling for.

Once you have a live embryo, it has to keep growing. Sometimes it does, sometimes it doesn't. Nothing you can do about this except pray and keep every finger and toe crossed. If it works, the embryo's one cell splits into two, and those split into four cells, and so on. After three days, if they're still alive and growing, there are about 8 or 16 cells and they're big enough to squeeze out of the egg shell and burrow into the lining of the uterus. In the lab, sometimes the technicians do assisted hatching. That means more money. I mean, that means they make teeny holes in the shell of the egg with a laser, so it will be easier for the embryo cells to bust out. Which they may or may not do.

In the meantime, the woman's body hormones have switched to progesterone, pro-gest, to make a nice bloody bed to feed and house the embryo in the uterus. If the woman's hormones aren't doing it on their own, or if they are, just to help them along, the doctors prescribe tons of injectible hormones to make this happen. Progesterone shots are absolute hell. You have to put an ice pack on your butt to freeze the area so you won't feel the huge needle or stinging progesterone in a sesame or olive-oil base (!!!) going into your muscle. Then when it's in, you switch to a heating pad to help disperse the hormone and the oil. Because oil does not naturally disperse from water-based muscle tissue! You have to help it along or it will create pockets of oil. Welts. The bruises that result are phenomenal. The hip hurts all day and all night, and the pain sometimes goes along with areas of numbness. My hip alternately hurts and is numb, and I last did IVF about six months ago. I'm told this goes away in a few months. Still waiting. So the shots happen for two weeks at least, from ovulation to when the woman's period would be expected. If she's pregnant, they last for longer.

Although progesterone makes for a lovely uterine lining, it makes for a terrible, terrible body to be stuck in. I believe that progesterone is responsible for the PMS stereotypes that women get plagued with. Progesterone has made my body very sore and incredibly lethargic, has made me burst out in tears all the time for no reason, and has made me feel the need to take emergency naps - when my body lets me know it has two minutes before it is going to stop. Then I have to race home and hope I make it before I shut down. When I'm awake, it makes me very, well, irritable. I don't know why the progesterone, which is supposed to be so good for family-building, doesn't drive the husbands away. It should, by all rights. The partner has to be the one to give the deadly, scary shot to his love's butt every night (alternating sides night by night); this "hurts him more than it hurts her," but only kind-of. Yes, it's scary when the injection site shoots out a spray of blood. And it's damned tedious to have an emotional, pained spouse. I think giving the shots may be a kind of vetting process. If the couple can't stand each other during this period, they weren't cut out for the very worst aspects of parenting together. If they can get through it, their own chances of survival are a lot higher.

So now the action shifts back to the uterus -- or the lab. In IVF, the embryos were formed outside of the body and get put back into the uterus through a catheter when they are three or five days old. If there are any extra embryos they can be frozen to be used next time. On our last IVF, we had 11 follicles that produced 11 eggs, and 9 of them fertilized. By Day 3 they looked so good that the doctor pushed us two days to be able to transfer them back to me on Day 5. On Day 5, the embryo has turned into a blastocyst and has a better chance of implanting in the uterus. We were thrilled that by Day 5 we still had three blastocysts. We transferred two back in, and hoped to freeze the other blastocyst or maybe any other embryos that hadn't become blastocysts. But nobody else survived to be frozen. That's a shame, because as you can guess, it's a pain in the butt to produce an embryo from scratch.

After the embryo forms on its own or in the petri dish, it has only a few days to squeeze out of its egg shell and burrow down into the uterine blood. It might or it might not do it. Once you have two good embryos in there, there's still only a 50% chance that one or both of the embryos will stick. If you do this process naturally, you go on your merry way and then keep an eye out for your period in two weeks. In the IVF world, this is the dreaded Two Week Wait (2ww). It's awful. You can think of nothing but progesterone shots and wondering whether the little embryos who are in you, which make you technically count as pregnant, are still there and are still alive.

If the uterine lining is okay, and the embryo is okay, and the implantation happens, and the genetic make-up of the egg and sperm are okay, and the embryo can hang on for about a week and a half, you might be pregnant. If you have the luxury of being calm about it, you can wait and see whether you have a menstrual period on time, and if not, you can take a home pregnancy test and watch to see whether in two minutes you make the second pink line show up, or if it's just the first pink line. If you've done IVF, you have an appointment for a blood test at your doctor's office, and you are admonished not to take a home test ahead of time because it is much less accurate than the blood test at the doctor's office. You may or may not put yourself through the hell of trying to find out early, and then wondering whether the test was actually accurate.

Books advise you to have your nurse call you with the results of the pregnancy test, and leave them on an answering machine that you will not be at. In the evening, when you are away from work and can be with your spouse, you can listen to the message together and find out the good or bad news. We chose to have a pitcher of margaritas ready. Somehow the nurse misunderstood my instructions, and at 7:00, when the office was closed and everyone had gone home, James and I shakily listened to our message. It said, "call us back." What!?! How could they play such a nasty trick? We called the nurse's emergency line, and she called us back within a few minutes from a payphone on the side of the road (her cell phone was broken). She told us she was sorry, but it was negative. We thanked her and hung up. And sobbed. And went for the margaritas.

After all that. After ALL THAT. And not a single embryo to freeze. And with all our follicles, eggs, sperm, embryos, uterine lining, blastocysts looking good along the way.

My friend Ashley is going through her third IVF right now. Her eggs were always immature and had a low fertilization rate. This time the doctors manipulated her hormones in such a way that she got to keep the eggs in their follicles, cooking, for a longer period of time. The hope was that they would be better at fertilizing when they came out slightly later. Well, of 18 follicles, they only got 8 eggs. And then only one fertilized. Those are heartbreaking numbers. Yes, they still have a chance that that one embryo will keep growing and then will hatch properly and implant properly... but it would be better if there were more to work with.

And that brings me to another post, for another day, on unfairness in the world.

Thursday, March 20, 2008

Boobie Pain and Needing Needles Gotten from Get

Long ago I used to call them "breasts." Now that I am married and have succumbed to the influence of my husband, I call them "boobies."

Now that I'm on my second IVF, and with a different doctor, I've started a regimen of two weeks of birth control pills before we bring out the injectibles. I'm on Day 5, and this morning I woke up to some boobie pain. It felt like someone had taken a broom handle and jabbed me in the outside of my left breast. I mean boobie. Not a sharp pain, just like a bruise an inch in. I gave myself a quick lump check in the shower, just in case, and everything seemed fine.

Just to be sure, I first consulted my girls on the Daily Strength online support group (the ultimate authority), and then I called my nurse. Both said the same thing: birth control pills can cause pain in breasts. I mentioned to my nurse how my husband had changed my way of referring to and thinking about "boobies," and she said that it was doctor's orders that he not be too aggressive with them. Hands off the boobies until they feel better! I told this to James just now, and he sounded a little sad. So we just agreed "gentle" would be okay.

What a crazy life.

I don't think I described to you my experience this weekend at the pharmacy. My clinic faxed my prescriptions to my local drugstore, whose experience with this stuff seems, well, minimal. On Saturday I picked up my doxicycline and estradiol, both of which were paid for by insurance. I talked to the pharmacist, whose first name is "Get," and whose last name I don't remember. He seems to hail from Southeast Asia, perhaps the Indian Subcontinent. He is extremely sweet, even if his English is not that great. He pulled out the fax with my prescriptions, where he had highlighted several things and made notes. He was waiting for insurance pre-authorization for the big meds, and in the meantime had started looking for the right needles. He could find everything except for one: the fresh needle we screw onto the syringe after we have mixed the dry menopur with the sterile solution and sucked it into the chamber using the first (dull?) needle, and which we then jab me with.

I told Get about the left-over medicine I have from last time, which he can subtract from the order. I wondered how it would all work out, since he wrote "need 600" by the Follistim, and "need" by the faxed specifications for the last needle -- meaning that in that case we only needed the needle, not the syringe part too. If he was spelling need and needle the same in his super-complicated notes, well, I just hope he remembers what he meant.

After I picked up my estradiol and doxicycline, I realized that the reason I hadn't gotten my birth control pills (Ortho Nova or Novum?) was that I had forgotten to give him that prescription. I handed it over with an apology, and waited for him to fill it. I was sitting in a chair by the pharmacy counter when he called me back up to talk to him. "Can I ask you a question?" he said. "Why do you need the birth control pills?" I explained that it regulated my hormones and got my body stable and ready for the next phase of treatment. I thought it was pretty funny for me to be the one explaining it to the trained and licensed health professional. But you have to admit that it's a really good question; the answer is not as obvious.

Because we never really came to a resolution about the pesky fourth kind of needle, I agreed to come back the next day with my box of left-over IVF gadgetry. I had a clear plastic shoe box that I opened up on the pharmacy counter and which we dug through like it was a treasure chest. As he wrote down the number on the needle packaging, a man who was behind me in line, and whose first language was also not English, asked, "Are you diabetic?" "No," I smiled: "infertile." He looked puzzled. "I can't have a baby. I want to have a baby." Ah, he perked up. "It's very complicated!" I explained. He agreed. Very sweet.

When Get and I were finished with our daily pow-wow, I told him that I'd certainly be back. "I want to see you come back with a baby!" he said. Fortunately, James and I have decided that we're never ever moving from our house, which we just bought last year around the corner. As long as Rite-Aid can stick around, I have confidence that Get will see me pregnant.

I am not so confident that I will actually get the meds from Get. Get doesn't seem to be Getting the Getting-job done. I am aware of this. My ace in the hole is the Portland mail-order pharmacy that has actually heard of this stuff, and which can overnight medicine. I may be having a conversation with them later this week. But it won't be as fun.

Silence is Rotten

When I was in fourth grade in 1981, there were two words that were always said in whispers: cancer and sex. Cancer used to be the ultimate villain, always deadly, and its name was as unspeakable within families as "Voldemort" is for Harry Potter fans. Sex, meanwhile, was the nastiest, most shameful [and intriguing and necessary] evil that people could think of. And while they thought about it all the time, they NEVER said the word.

Nobody ever talks about infertility either. First of all, for most of history, it has just been a fact of life that people have to reconcile themselves to. In fact, back then, infertility was like cancer: it was a sad thing to happen to people, and there were few medical treatments that worked. Louise Brown, the first IVF "test tube baby" was only three years old, but that treatment wasn't widely available. Even if it had been, it was more like science fiction than real life.

Infertility as a subject was also off limits because it involved procreation, and procreation involved s-e-x. You couldn't tell your relatives about your sex life. ARE YOU KIDDING ME!? Confess to your parents that the sex in your marriage wasn't doing what it was supposed to do? Not on your life! So the conversations went un-had, and as a childless friend of mine told me once, "After a while they stop asking when you're going to have kids." And so here and there, even today, you just see couples without children, and you wonder, but you don't ever, ever ask.

Well, I do. I have turned up sad stories of years of trying before giving up, of babies that didn't survive, and also of people who "came to their senses" and realized that life without children would be a lot better! (No, Aunt Jody, this child is not offended in the least). There are lots of people who don't want to talk about the sad things that happen in their lives. But I think there are a lot of people who are hurting and would like some comfort. That means talking about it, or at least acknowledging the pain.

So this is my prescription: open your mouth. Tell your suffering loved ones that you care about them and are sad they're sad. Ask them what they're going through; don't presume to know. And then if they say they don't want to talk about it, at least they'll know that you care.

Now that that point is made, I'm going to complicate things.

There are some things you can say that don't help; in fact, they hurt. Try to stay away from these:

  • You could always adopt. [Problem: before you can adopt, you have to grieve the idea that you'll never have your own biological baby. And crazy as it sounds, people want their own babies. What's more, adoptions cost around $35,000 and take years. They aren't automatic and free.]
  • It's okay; children are a lot of trouble anyway. At least you get to sleep late. [Problem: I want that trouble. I would give anything, anything, to have a baby. That includes sleep.]
  • It's okay; children are really expensive. [Problem: If we were concerned about the expense, we wouldn't have paid $40,000 for the chance to conceive.]
  • Just relax: it will happen. [Problem: infertile couples have, by definition, been trying to conceive for over a year. Infertility is a medical condition, not a stress condition. Relaxing is irrelevant.]
  • Have you tried putting your hips on a pillow after sex/using an ovulation predictor kit/taking your temperature/going on vacation?... [Problem: you can bet we know more about this process than you do. Your suggestions for what "works" just remind us how easy it is for everybody else.]
  • You can share your cousin's baby; she's just darling! [Problem: should be obvious. And yet, this was a real statement from someone I love very much.]
  • I know someone who started adoption proceedings, and then she got pregnant. [Problem: we all know someone like this, if not three or four women. It's a neat story. But conception doesn't happen just because you're not thinking about it. Infertile couples have about a 5% chance of spontaneously conceiving a child. The reason some adopters get pregnant is that they fall into that 5%, not because they took their minds off it. Furthermore, if you recommend that we try to adopt a child simply as a means to another end, um, isn't that unfair to the adopted child?]
  • Maybe it just wasn't meant to be. [Problem: why should we accept a medical condition as fate? That's no fair.]

The reason I thought about this subject today is that I received a comment on the first blog posting from my friend Aimee. This is what it said:

"My heart and love go to you both. There is just nothing else to say, but please know that you are in my daily thoughts and prayers."

Now that is what I wanted to hear.

Wednesday, March 19, 2008

Out of Order





This afternoon I had a tearful conversation with a friend whose mother died last night; my friend arrived on a flight from Africa just a couple of days ago, just in time to tell her mom she loved her. Earlier today I had a tearful conversation with a friend whose little boy had died of cancer ten years ago; he would have graduated from high school this spring. The first situation is sadder because it happened last night and my poor friend was so distraught. The second situation is sadder because no mother should have to bury her child. It is unthinkable.

The Aztecs were funny the way they made sense of contradiction. One of their main gods, Quetzalcoatl, the feathered serpent, god of land and sky, was also known as the divine twin, the god of paradoxes. He showed that opposites were one and the same. One of the big paradoxes was the idea that death was life and life was death. The fact that life and death are cyclical and can't exist without the other is familiar to us, but we have a hard time considering them the same thing.

Still, in my quest to create a life, I have thought a lot about the close connection between the two. I have thought a lot about generations, a lot about continuity in change. I am profoundly aware of the lineage I share with my mom and her mother. I live in terror that one of them might die some day. My grandmother seems a more likely candidate, as she is about to turn 95 and has declared her very cogent little self to be "fading." Nine years ago today, my paternal grandmother died. That week I watched her coffin be lowered into the family plot at the small West Texas cemetery. I have never felt such a jolt as then, when I came to understand the cyclical nature of life and families: as a young woman, Grandma had stood just feet away from where I was standing, and had watched her own grandparents and parents lowered into the very same ground. Now it was my turn. Now I was her.

We humans like order. We have a chronological pattern that we need to follow, to feel secure about life even as we understand the certainty of death. One very important part of our order is that children cannot die before their parents. A Nigerian friend told me recently that in Nigeria, older family members are not allowed to see the corpses of younger family members. They can't go to their funerals. It compounds the disorder that happened when the younger person died first. It stems from bad luck and it creates bad luck.

Another way we think of the order of life is this: "First comes love, then comes marriage, then comes baby in a baby carriage." A variation on that, which my friend Lucy pointed out last week, is that in upper-middle-class America, first comes college, then comes marriage, then comes children. The moment that one of those things gets out of order or doesn't happen, we just don't know what to do, what to expect, what to think. We just can't figure out how that would work at all. We disdain it because it's just so wrong!

So here's the thing about me: I don't like death. And it may seem like an overstatement to those of you who haven't experienced infertility, but failing to have a baby seems a lot like death. It's the forced absence, for ever and ever, of a loved one, a family member, the next step in the chain. If I have to lose my grandparents, I'll be damned if I don't get to replace them with the next branch of the family tree.

So like death, infertility involves grief and loss. It involves guilt because every month I think my bereaved baby's life could be resurrected, and he or she could live after all, but then something happens and there is no life. Was it my fault? Should I not have had the Diet Coke? Should I not have gone to aerobics? Would the embryo have been created, the baby have lived, if I'd taken another day on bed rest? I feel that on these tiny decisions rest the fates of eight grandparents' lineages. An awareness of history crushes me. The pull of the future won't let me alone. And every single month I feel it all, and it always ends badly.

My friend Ashley, who is herself battling the beast of infertility, has noticed that her own eggs will be removed from her ovaries around the same time as kids are hunting for Easter Eggs. I notice that my thoughts of death and life, and the order in which they're supposed to happen, have come precariously close to Good Friday and Easter. I don't know what it all means, except that the concept of life after death -- talk about shaking up the established order! -- has really caught humanity's attention. People make a big deal about eggs and fertility and life. Springtime is when life is supposed to burst forth everywhere.

Please don't get me wrong. I know I'm alive, and death has never torn me apart. I know that infertility can never compare to the anguish of losing people we have come to know and love. I grieve for my friends who have had to grieve their parents and children, who are doing it now.
The point I want to make is simply that infertility is not nothing. It's massive. Its implications are as big as life, and the sadness it creates makes me feel like I'm carrying around nothing but death.
---------------------------------------
P.S. In the pictures, see Grandma's grave, me and Mamaw, and the two embryos made from James's and my DNA, but which did not live to become babies.

Writing this Wrong

I'm still exploring the idea of a blog in my mind. Why on earth would I want to cast my most personal thoughts into cyberspace? In the early days of blogging, I couldn't get over the idea that people were putting their diaries -- the forum for their secret thoughts and catharses! -- online for everyone to see. I didn't see why anyone would be interested, and I thought it was almost obscene to be so open.

I wrote in my first post some of the reasons I wanted others to learn about my experience: so they'd know what was going on in my life, so they'd learn about infertility, and so they'd know how to interact in real life with their infertile friends.

But mostly, I'm writing this for myself.

I may not be having much success procreating, but I can still proactively create. Last year, because our quest was costing so much money, I left my art-quilting business at home and came back to the attorney work force. While making fiber art lets me get my soul involved in my day-to-day existence, making money lets me pay the credit card bills where we have financed our hopes. Getting out of the house is wonderful. Having daily contact with other people is essential. But where's the creativity? And so I write. And writing is really fun. I may not be making babies, but I'm making stories.

And then there's therapy. Being infertile makes me very, very sad. I was already on anti-depressants after the Great Depression of 2003, and without them, I would surely be wallowing under the covers of my bed, unable to face the world at all. But I do get up, get dressed, and get out there. And then I do a lot of crying in public, especially in grocery stores where babies frequent the child seats in the shopping carts. When I write about my adventures out in this world, I get to frame them in terms of the funny, the absurd, the educational. The more I write about things after the fact, the more I can assume the narrator's perspective when I'm actually in the sad moments. It's a little bit of psychological armor.

That's it for the introduction. In the next post, get ready for some quality entertainment.

Tuesday, March 18, 2008

Starting in the Middle, at the Core


James and I got married two years ago today, and a few months later started trying to get pregnant. What ensued wasn't nearly as fun as everyone says.


So far, we have paid almost $40,000 out of our pockets, gone to the doctor about 35 times, learned how to administer subcutaneous and intramuscular injections into my body, and undergone innumerable probes and procedures that would have been humiliating if we felt that kind of thing any more. We have been diagnosed and rediagnosed, fertilized and inseminated, X-rayed and acupunctured.


We have learned a lot about human reproduction. For example, our doctor told us a couple weeks ago that "Assisted hatching is often used on Day 6 blastocysts, simply to help ensure quick implantation before the end of the luteal phase, which at that point is considerably shortened." He stopped himself and asked if he needed to explain what that meant. No, we knew.


We have learned a lot about our bodies. We are completely normal. After having been diagnosed with several maladies each, James and I now know we've always had a completely clean medical slate. Turns out we're just a couple with "unexplained infertility." But for all our infertility, we can tell you with absolute certainty every detail about how our reproductive systems work.


We have learned a lot about the infertility subculture. A couple is "infertile" if after a year of trying to conceive, the woman has not yet become pregnant. It doesn't mean that pregnancy is impossible, but it does become a lot more unlikely without medical intervention. Infertile couples struggle trying to overcome medical, social, financial, and emotional strains that they never knew existed. They try to maintain normal relationships with the people around them. All the while, they are shouldering an existential fear that they will die childless, with no one to pass their lives onto. Needing to have a baby is human instinct; it's as important to the preservation of the species as needing to eat. And that makes it impossible to ignore. It makes it impossible to "just relax." (And by the way, "just relaxing" is not a cure).


In the last two years we have learned a lot about how our society and infertility get along. Not well. The purpose of this blog is to introduce the two.


I hope that by the end of this project:


  • More people will understand infertility: what it is, and what a big deal it is.

  • More people will know how best to support infertile couples... and what to say and not to say to them.

  • My friends will understand why I have become so distant, and my writing will be a way to keep them close for the duration.

  • I will get pregnant with a healthy, beautiful baby.

In a few weeks we start our second cycle of invitro fertilization. IVF is the two-month process by which doctors stimulate production of lots of eggs inside my body, surgically remove them when they appear to be ready, add them to a processed version of James's sperm, incubate them as they fertilize and form embryos, return them to my uterus, and then wait for two weeks to see whether it worked.

Four years ago I was in agony, despairing of ever meeting anyone like James. And then I did, and he has made me happier than I've ever been. But the same old despair has crept back into my life as I go through so much, and hope so desperately, for just a chance to have a baby to love. I'm hopeful that it will happen some day. So join us as we spend the next few months, or maybe years, trying to grow our family even more.