Monday, October 19, 2009

Isn't it ironic?

I'm actually feeling better, saner, happier in the last 10 days since going public and admitting that I'm *not* doing so well with all of this. Thanks for reading!

Sunday, October 18, 2009

On the dark side

I caught Barbara Ehrenreich on Jon Stewart the other night, talking about her new book, Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. I haven't actually read the book, so what follows is based on the Jon Stewart interview and the press release from her publisher. The book stemmed from Ehrenreich's breast cancer diagnosis and treatment, a period in which people told her to stay positive, visualize the cancer shrinking, repeat affirmations about her strength and health. Her theory is that "the relentless push for patients to maintain a positive attitude is often psychologically devastating."

I couldn't agree more, especially with regard to infertility. The bane of every IF's existence is someone saying "just relax." First, it's impossible, what with the constant monitoring, timing sex, giving up wine for two weeks out of the month, waiting to test, waiting to test again after the first BFN each cycle, popping pills or injecting shots, early morning trips to the doctor for ultrasounds that could reveal good or devastating news. There's nothing relaxing about any of it. Second, it doesn't work. Relaxing is not going to get me pregnant. Yes, we've all heard the stories about women who adopt a baby, only to discover they're pregnant and end up with Irish twins or women who, after multiple rounds of IVF finally produce a baby, suddenly get pregnant on their own. But in truth, it happens quite rarely. (And I suspect that the latter -- post-IVF surprise pregnancies -- result from the IVF finally shocking our systems into submission, an actual biological change, not from relaxation).

But is the "just relax" mantra (along with saying positive affirmations about my womb being a warm and welcoming place and visualizing the swimmers and eggies doing what they're supposed to do) actually, as Ehrenreich posits, "psychologically devastating"? Yes. Infertililty is a dark and lonely place. Despite knowing so many other women going through this right now, I often feel very alone. All the happy pregnancy announcements and adorable baby photos on Facebook crowd out the knowledge that there are others just like me. And when we are told to "just relax" and be positive, it feels like a denial of our reality, which is, frankly, "dark and twisty." It's okay that we are desperate and depressed. We feel betrayed by our own bodies; the one thing we are supposed to be able to do, we can't. Meet us where we are.

I think the positive thinking approach is really for the benefit of the "friend," not the patient. By telling us to remain positive and think good thoughts, the "friend" gets to avoid the dark and twisty. That's only more isolating for the patient. We're made to feel like we're wrong for feeling like we do.

But if you want to say affirmations and visualize for us, that's okay! I don't know if prayer works, in the sense that G-d hears our prayers and then intervenes in our lives. But I do know that circles of prayer -- as well as circles of affirmation and positive visualization -- can make us feel loved and supported. So feel free to pray or affirm or visualize for us; we'll draw on that strength. But don't expect us to do the same, and be willing to listen and accept it when we can't.

Thursday, October 15, 2009

A tentative plan

It's amazing how helpful typing out the options is! Within hours of yesterday's post, we had a plan. We've got an appointment for a second opinion at the other clinic in town in two weeks. The biggest question we've got for both clinics is whether they would do the local bloodwork and ultrasound monitoring if we do a cycle at CCRM in Denver. That may well be the deciding factor, more than the stats of the respective clinics here. We're tentatively planning to do an initial IVF cycle here in town in February/March. If it doesn't work, we'll head to CCRM in May and cycle there over the summer, taking advantage of the flexibility that comes with our professorial schedules. In the meantime, we'll probably spend some time this winter thinking about our "Dear Birth Mother" letter to submit to adoption agencies. I can't imagine a more daunting task than writing a letter to convince a woman to let us raise her baby.

Wednesday, October 14, 2009

Choosing a clinic

Assuming our last round of IUI (whenever that happens) doesn't work, we'll need to choose an IVF clinic. We have four options:
*Our current clinic at the University. We really like the staff and find it to be a calming place that offers personalized attention. But it's a relatively new program.
*The other clinic in the city. It's a much bigger and older program, which means less personalized service but more experience.
*Colorado Center for Reproductive Medicine. It's the number one clinic in the country, according to Parents Magazine. I have a friend who had great success there. It's the place that all the IF bloggers go when all else fails. But it's out of network, which means meeting my deductible and huge co-pays.
*Presbyterian Hospital in Dallas. It used to be the number seven clinic, though the personnel has changed. And it's out of network. So this one seems easy to eliminate.

In patients under 35, all four clinics have roughly equal success rates: 57-65 percent. But in the 35-37 age range, the numbers vary wildly: our clinic had a 38 percent success rate in 2007; the other clinic in the city 51 percent; and CCRM 58 percent.

Technically, we have time for two IVF cycles before I move from the under 35 group to the 35-37 group. But my FSH levels suggest my eggs are old, so I wonder if I should just assume I'm going to behave like the 35-37 age group, which probably means switching clinics.

Sunday, October 11, 2009

What's in a name?

Infertile:
  1. Not fertile; unproductive or barren.

  2. Biology

    1. Not capable of initiating, sustaining, or supporting reproduction.

    2. Not fertilized and hence incapable of growing and developing: infertile duck eggs.

  3. Not capable of sustaining crops or vegetation: infertile land.

  4. Unproductive or producing little: a path of research that proved infertile.


Barren:
    1. Not producing offspring.

    2. Incapable of producing offspring.

  1. Lacking vegetation, especially useful vegetation.

  2. Unproductive of results or gains; unprofitable: barren efforts. See Synonyms at futile.

  3. Devoid of something specified: writing barren of insight. See Synonyms at empty.

  4. Lacking in liveliness or interest.

The American Heritage® Dictionary of the English Language, Fourth Edition
Copyright © 2009

They mean the same thing; barren is, in fact, a synonym for infertile. But I prefer barren. Its old-fashioned sound takes the edge off the bleakness. Plus, good things happen to barren women in the Bible:

1Now Sarai, Abram’s wife, had borne him no children.... [But God said,] "16I will bless her, and moreover, I will give you a son by her. I will bless her, and she shall become nations; kings of peoples shall come from her."
Genesis 16:1, 17:16

5
In the time of Herod king of Judea there was a priest named Zechariah, who belonged to the priestly division of Abijah; his wife Elizabeth was also a descendant of Aaron. 6Both of them were upright in the sight of God, observing all the Lord's commandments and regulations blamelessly. 7But they had no children, because Elizabeth was barren; and they were both well along in years....11Then an angel of the Lord appeared to him, standing at the right side of the altar of incense. 12When Zechariah saw him, he was startled and was gripped with fear. 13But the angel said to him: "Do not be afraid, Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son, and you are to give him the name John. 14He will be a joy and delight to you, and many will rejoice because of his birth, 15for ... he will be filled with the Holy Spirit even from birth. 16Many of the people of Israel will he bring back to the Lord their God. 17And he will go on before the Lord, in the spirit and power of Elijah, to turn the hearts of the fathers to their children and the disobedient to the wisdom of the righteous—to make ready a people prepared for the Lord."
Luke 1:5-17

Thursday, October 8, 2009

What it's like

I've never been terribly self-reflective. I was a terrible journaler; psychotherapy, though incredibly valuable, was like pulling teeth. I don't often just sit down and think about how this feels. But I am contemplating a post about it. It sucks, not being able to do the one thing I've ever wanted to do. But there's more to it. And hopefully some day soon I'll write about it.

Awesome

Dark humor will get me through anything.


Hat tip: Mo and Will

Health care portability

I'm lucky to have always had good employer-sponsored health insurance, so I don't (yet) need a public option. But one of the big lessons of infertility for me has been the value of insurance choice and portability. Massachusetts requires insurance coverage of infertility, one of the things that has made universal health care in MA so expensive. So our two cycles of meds, two inseminations, and a multitude of doctor visits and tests cost us only my co-pay (and those ultrasounds in the basement didn't cost anything). Actual cost: at least $3200. Our cost: less than $100, plus my regular insurance premiums. Insurance: priceless.

My current employer, like most, does not cover infertility treatment. No problem, I thought, I'll just take advantage of COBRA and maintain my Massachusetts insurance. Even at $500/mo, it's cheaper than paying out of pocket. But then I realized that my Massachusetts insurance was only good in Massachusetts, and I couldn't exactly spend two weeks a month living at the Brigham. Panic set in, until I realized that old employer had an out-of-state insurance plan for it's out-of-state employees. And, thank goodness, moving out of state is a "qualifying event" that lets you switch insurance plans, even if you're no longer employed. Under COBRA, you're still entitled to take advantage of a qualifying event. So I am continuing to shell out $500/mo for Massachusetts-level coverage.

So far, it's probably been a wash: one complete cycle and one canceled cycle here in OK have probably not cost more than $2000, and I've now paid $2000 in COBRA premiums (though I've also used that insurance for other medical care, so I'm still a bit ahead). But if I maintain COBRA for the full 18 months, it will cost $9000, significantly less than IVF would cost if our next Clomid cycle doesn't work. And we should have time for two IVF cycles in 2010.

Regardless, I feel so lucky to have been able to bring my insurance with me. I'll gladly pay the additional premium for the infertility coverage. But in OK I don't have that choice. I should have been able to bring my insurance with me no matter what. And my medical records should have followed me, but they didn't. My current insurance carrier tried to deny my first OK IUI because it didn't have my records from Boston, even though I'd requested them from the B&W six weeks earlier. I think we've worked it out, but it shouldn't have been that hard.

So hard

March 2008: Brent has not landed a tenure-track job, but the dean has extended my contract for another year. Since we know we're not moving for at least 15 months, we decide to start trying to conceive (TTC). I'm quite certain that I'm ovulating and this will happen quickly.

April 2008-September 2008: Not pregnant, despite temperature charting and ovulation predictor kits and our very best efforts. I begin to suspect that I'm not ovulating as well as I thought. I also begin to suspect that I have fibroids.

September 2008: With six months of charts, we head to the OB. Mostly she tells us it hasn't been long enough and tells us to come back in three months. (Lesson number 1: if you're over 30 and know there's a problem, lie to the doctor about how long you've been trying.) At least she sends us for a semen analysis, which reveals mixed news: we've got lots of swimmers but they're shaped kind of funky. Dr. Google is not much help in telling me what caused the morphology issue or how to fix it.

December 2008: Second semen analysis shows the same results. This time a visit to the OB nets us a referral to the big guns down at the Brigham and Women's Hospital. (Of course, I think the fact that B&W has the best OB/GYN program in the country means that it has an equally well-ranked infertility practice. Not. But I don't learn that until much later.)

January - February 2009: Lots of tests, again with mixed results. Cycle day 3 blood work reveals a slightly elevated FSH (follicular stimulating hormone) level. Apparently my eggs are older than their years. Other tests come back fine. An HSG (contrast x-ray of my insides) reveals open tubes and a normally shaped uterus (I can see it - looks just like a textbook). No fibroids? I ask the doc. Not that I can see, he says. Hm. An endometrial biopsy shows the lining of my uterus is in good shape. After one more natural cycle with a little bit of post-O support from progesterone, we are on our way. But Brent gets a job in Oklahoma. We're moving in July; we're running out of time!

March 2009: 100 mg of Clomid on days 5-9. Beginning on day 11, I start going to the Brigham at 6 a.m. every other day for ultrasounds. I have no follicles developing. After a week or so, I demand bloodwork to figure out what's going on. I start going in every day. I am butchered and develop track marks on both arms. Spring break trip is canceled. Finally (finally!) a couple of follies grow, and eventually, after nearly two weeks of these mornings, the bloodwork and ovulation prediction kit shows that we're good to go. Back-to-back interuterine inseminations (IUIs) follow.

April 22, 2009: OMG, a positive pregnancy test! Am I really that girl who gets lucky on the first try? Maybe! I spend 24 hours floating on air.

April 23, 2009: Blood test comes back positive, but barely. The nurse is not optimistic.

Two days later: Still pregnant! Blood test shows that HCG (pregnancy hormone levels) are doubling. This could still work!

Two days later: HCG levels dropping; miscarriage is certain.

April 27-May 4: A very long week waiting for the miscarriage. This is the hardest thing we've done so far, the waiting. Lots of morbid jokes about dead babies ensue. But we do make a trip to the roller coasters at Canobie Lake Park to try to move things along.

May 4, 2009: Painful, exhausting miscarriage, but at least it's over.

May-June 2009: Two cycles off to recover from the miscarriage and find a house in OK. Meet with the doctor and decide to pull out all the stops: injectible meds. One theory is that the egg was "overripe" when it was fertilized, so we want to get me to ovulate sooner.

July 2009: Gon@l-F 150 injected into my belly every day starting on CD3; I discover I have no problem sticking myself with needles. Ultrasound on CD10 reveals we're ready to go. Brent manages to get through the injection of HCG to trigger ovulation (an intramuscular injection in the patootie). We have back-to-back IUIs. I've got lots of eggwhite cervical mucous; I'm convinced this one's going to work. But Aunt Flo (AF) arrives before I even get a BFN (big fat negative on a home pregnancy test). We move to Oklahoma.

August 2009: On our fourth day in Oklahoma, we visit our new fertility docs at OU. This is an entirely different experience: the doctor (not some tech in the basement) does the u/s and explains to us what we're seeing. Guess what? I do have a fibroid. Told you so. But he doesn't think it's the problem. We receive a (not terribly helpful) diagnosis: unexplained infertility with mild male factor. Since I got pg on Clomid, he wants to try that again, but starting on CD3 instead of 5.

September 2009: U/S on CD12 reveals good follicular development; U/S on CD14 shows we're ready to rumble. OU doesn't wait for ovulation to happen naturally; it's time for another HCG shot. But OU doesn't require IM injections; it's just a little needle in my belly. I can handle that. My one objection is that OU does a single insemination, not back-to-back. But beggars can't be choosers. Progesterone keeps AF at bay for a normal (>10 day) luteal phase, but both home pregnancy tests and the blood test reveal BFNs. I start Clomid again on CD3.

October 2009: I realize on CD7 that something's wrong; I feel like I'm ovulating or about to. But stupidly, I don't call the doctor. I've never ovulated this early before (on my own, I'm usually at CD18 and on Clomid, between CD14 and 23). I ignore it. Sure enough, u/s and blood work on CD13 reveal I ovulated about CD10. This cycle is a bust. And it's the most upset I've been so far. Now we're waiting for AF to arrive and wondering if we'll be able to squeeze in another cycle before the holidays, even though I'm traveling virtually every weekend.