Thoughts On Choosing the Donor Egg Path

Photo by Frank Monnerjahn via Flickr

IVF with donor egg is a tough concept to wrap your brain around; I certainly struggled with it initially. We've certainly flip-flopped around in our family building plans in the two years since I was diagnosed: donor egg, adoption, then back to donor egg. I have RESOLVE of New England to thank for that; we went to the 2009 Annual Family Building Options Conference and came out thinking donor egg. Then we went to their Adoption Decision-Making Seminar and came out thinking adoption. After volunteering at last year's Annual Conference, we're back on the path to donor egg. Like I've mentioned in our latest snapshot of our infertility journey, the only thing holding us up is getting our finances saved up for the adventure.

Despite all the flip-flopping on the mechanics of building our family, Saturday certainly solidified the decision for us and for the first time, saving up the money be damned, I'm actually really excited about the prospect of donor egg. On Saturday, RNE hosted their Donor Egg Decision-Making Seminar; since I'm on the Board, I got to host the event: set up the room, make sure the presenters are set, sign in and register attendees. Did I deliberately volunteer to host one of our programs that just so happens to be right up my interest alley? Why, I don't know what you're talking about!

I brought my laptop with me and tweeted a lot of the key points and information throughout the day. (You can see the summary of all the #RNEDESeminar tweets here.) It was a nice way to be able to not only jot down notes for myself, but to share them with folks as they were around on Twitter Saturday. Despite all of the research Larry and I have done regarding donor egg, there's always something new to learn, and I certainly picked up a few interesting facts, such as...

Did you know different sects of the same religion have different views on donor egg? For example, if you're a Sunni Muslim, donor egg is forbidden; if you're a Shiite Muslim, it is permitted. Of course my ears perked up when the presenter talked about Judaism: the halacha is a bit fuzzy on the whole issue of donor egg, so really, it's whatever your Rabbi says. Ha! Like I have a Rabbi right now; we still need to find a shul to call our own. (PS: live in MA? Know of a nice Reconstructionist Temple w/in the Boston/North Shore area? Email me.)

That said, I learned a lot and was thrilled to connect with the other attendees; we had 14 total (7 couples) and it was refreshing to connect and talk with folks in person. I'm actually seriously considering starting my own peer-led support group in the North Shore region; meeting other people who really understand the infertility experience is so therapeutic. I'm hardly a healed woman myself; I've come a long way, yes, but I still need the support on a regular basis. I was also shocked that 2 other women there had POF diagnoses, as well as one of the panelist speakers at the end of the day. We're such a small lot that I was glad I could meet other POF-ers in person. ("Glad" of course is a relative term: no woman should ever have to go through POF.)

I wanted to share just a few highlights from the day. The Donor Egg Seminar was structured into five sessions throughout the entire day and I'll just share a few gems from each one:

From Preparing the Way for Egg Donation
Dr. John Petrozza, Chief, Reproductive Medicine and IVF, and Joan Eilers, RN, MGH Fertility Center

• IVF with donor egg has around a 55% success rate nationally which is slightly higher than "regular" IVF (that is, trying to use your own eggs). While success rates vary by clinic, select a clinic that feels like the right fit for you: consider doctor/patient dynamic, nurse and office staff, timeliness of response, etc.
• The ASRM guidelines for donor compensation suggest a minimum donor fee of $5,000 but anything above that should be justified (which is a debatable term right now). The ASRM considers a donor compensation fee above $10,000 to be exorbitant. 
• Donor egg recipients have it a lot easier than normal IVF patients. The prep is in telling the ovaries "Hey! Don't do anything!" and that's typically accomplished with birth control pills. Some recipients may complete a mock cycle: it's a dry run just to see how the recipient responds to meds; this is typically reserved for patients who have never completed IVF before and is usually done concurrently while the donor get screened, to save time.

From Legal Issues and Contracts
Amy Demma, Esq, Law Office of Amy Demma

• Reproductive lawyers are a small, niche group in this country but are extremely well-versed in the intricacies of navigating the legality and ethics of assisted reproductive technology. It's in your best interest to seek out a specialist this this area of law rather than say, your real estate lawyer.
• Did you know about the Donor Sibling Registry? When working with a lawyer, you can include this in your contract with the donor requiring her to register. It's a valuable tool and resource for intended parents and donors.
• While not required, it's good practice to have your lawyer review your Service Agreement with your chosen donor agency. When in doubt, just remember: it's for your benefit and legal protection to have that set of expert eyes looking over any contracts before you sign.

From Finding a Donor
Sheryl Steinberg, Senior Case Manager, Fertility Source Companies: The Donor SOURCE

• Donors are typically young women in their early to mid-twenties. They come from all races, religious backgrounds, marital status, and may or may not have already had children.
• While you can't obtain full medical records of potential donors, they are expected to complete a detailed medical history and comprehensive diagnostic screening.

From Psychosocial Issues
Laura Lubetsky, LICSW, Brigham and Women's Hospital Center for Infertility and Reproductive Surgery

• Selecting your donor: looking through profiles and their pictures - is a weird experience, like you're going through Match.com. It's perfectly normal to feel weird about the whole thing; it's also perfectly normal for there to be feelings of guilt, anger, and grief.
• If you're using a known donor, particularly a family member like a sister, consider the Thanksgiving Dinner scenario. What will the dynamic be like with you, your sister, and your donor egg conceived child at the table? How will define your roles? How weird will it feel? Will it feel weird at all?
• While disclosure is almost always a good practice, it really is nobody's business how you got pregnant.
• The idea of how to tell your children they were conceived with donor egg can seem particularly daunting  to intended parents. Typically, after you have your child and once you're parenting, the idea doesn't seem so foreign and there are a variety of resources out there to help you begin that dialogue with your child.

From A Group Discussion About the Issues—Recipient Parents Speak
Annie Geoghegan, LICSW, Brigham and Women's Hospital Center for Infertility and Reproductive Surgery

• One couple on the panel talked about the very broad way of how they plan to tell their daughter she was conceived by donor egg: "You weren't an oops baby. In fact, your daddy and I couldn't have wanted you more."
• "Everyone comes to the moment they pick their donor differently, but when you do, something just clicks. Selecting a donor can become a very philosophical process."
• "Your emotions can change so much during the whole donor egg process. Just try to take it a day at a time."
• "The moment that baby is in your arms, all those concerns about using donor egg totally shift. You have to stomach this weird process to get to this wonderful end."

On a very personal note, this was perhaps the most emotional and valuable session of the entire day. I left feeling so filled with hope to hear success stories from parents via donor egg. I think the one piece of information that stuck with me, as I drove on a long quiet drive by myself back home afterward. Right now, even though donor egg and IVF and clinics and costs and how are we ever going to tell our children are so ever present on our minds, things totally change and all this worry-filled head space starts to feel more and more distant. The moderator for the panel discussion put it best: if you successfully resolve with donor egg, it stops being the headline. It becomes a badge you wear instead.

I like that. A headline implies that the whole world is looking at you with a judgmental lens; a badge is something we've worked hard to earn and is something of which we can be proud.

I can't wait and I hope I'm lucky enough to earn mine soon.

Surrogacy Lawyer Radio Show Update: MP3 Available Online

If you missed me on last week's The Surrogacy Laywer Radio Program with Evelina Sterling, you can download the show as an mp3 to listen to at your leisure!

Click here to download Premature Ovarian Failure and the NIAW/PETA Debate with Evelina Weidman Sterling and Keiko Zoll.

As the title mentions, Evelina and I talked about all things POF; Evelina spoke to the more clinical aspects of the disease and I shared my personal experiences as a patient. Evelina also shared how it's now referred to as Primary Ovarian Insuffiency. And of course, we saved a few minutes at the end to chat with Theresa about the whole PETA ordeal.

If you have 54 minutes right now, you can listen below:

Talking About POF Today on The Surrogacy Lawyer Radio Show

Do you have one free hour at 11am PST/2pm EST today? Want to know more about premature ovarian failure? Tune in to Theresa Erickson's The Surrogacy Lawyer Radio Program today to hear me and Evelina Sterling from Rachel's Well talk about POF, menstrual health, and share a few insights on this PETA thing.

Click here to tune in at 2pm EST today!

More info about today's show:

Misconceptions abound about the range and limits of female fertility. Despite concerted infertility education efforts, both the public and young women almost always are shocked to learn that female fertility starts to decline at age 27. But one to four percent of women under 40 will be faced with the even more shocking diagnosis of premature ovarian failure (POF). POF is a loss of ovarian function occurring at too young an age to be considered natural, although premature, menopause. Not only will these young women potentially lose their reproductive capabilities, but they also are at greater risk for heart disease and osteoporosis. A variety of medical conditions can cause POF, but doctors can not always identify one.

On the April 14 episode of The Surrogacy Lawyer: Your Guide to IVF and Third Party Family Building, Theresa Erickson, Esq., will be discussing this rare, but devastating condition with Evelina Weidman Sterling, a highly respected health educator and author, and Keiko Zoll, an infertility blogger who was motivated to become an infertility advocate after her own diagnosis of POF several years ago. The show will air on Thursday, April 14 at 11AM PST/2PM EST on Voice America.

This Friday is D-Day.

St. Patrick's Day will never be the same for me.

It's not like I roam the streets of Boston half-drunk or anything, quite the contrary: I deliberately avoid the nightlife scene on March 17th. When you work in higher education and your school just happens to be one of the few not on Spring Break, it's not a night that you look forward to anyway, especially when you're on call (like I am again this year).

It's the day after, March 18th. D-Day. Diagnosis Day.

This Friday will be two years since I was diagnosed with premature ovarian failure*.

Last year, I took the day off to relax and celebrate myself; it was pretty glorious. After the last month of truly upsetting anti-choice legislation and more recent legislative news making me physically ill, plus the near incomprehensible scale of tragedy in Japan over the weekend... I'm thinking of doing the same again this year to celebrate? Commemorate? Remember? I'm not sure of the right verb here.

I will be spending the morning getting my car inspected and ready to turn back in as my lease ends in two weeks. But I've taken the day off from work again, like last year. I swear my coworkers must think I take the day off as hangover relief from the night before.

I still haven't planned out the rest of the day. I think it's important that I acknowledge and do something for myself. With work and personal life as crazy as it's been recently, I haven't set aside any time to myself to plan my day. (I also haven't given myself the proper mental space to really reflect on it being two years now.) I'll be free after 1pm at the latest once my car is all done, but hopefully earlier.

It's Shabbos that evening, so perhaps a nice meal, and maybe actually lighting Shabbos candles for the first time in months. Or maybe a massage again. But massages aren't cheap, so I'm looking to do something else free or low-cost.

I'm open to suggestions. Sound off in the comments.

*POF was my diagnosis at the time although the preferred nomenclature is now premature ovarian insufficiency.

A second opinion on everything, really.

Doc Awesome: Artist's rendition.

My second opinion appointment went really well yesterday. The staff at the clinic were very professional and rather friendly. I tweeted from the office that the patients sitting in the waiting room, however, looked a bit somber, but I can't blame them. It just made the contrast between the friendliness of the staff that much more apparent.

Dr. "I have an incredibly awesome/sexy South African accent" who I suppose I should just shorten to Doc Awesome was equally as warm and friendly. (I would've called him Dr. Sexy, but that's reserved for our vet: a post for another day.) I came armed with my list of a dozen questions and a folder full of test results. What astounded me was that I didn't have to sit and give my schpiel (menarch at 9, PCOS Dx at 18, ovary out the same year, thyroid problems at 20, POF/Hashi's at 26 blah blah blah)... he had actually read my file prior to my appointment and was able to give me my own summary back to me.

I find this astounding because with Dr. G, I could count on at least 20 minutes of repeat dialogue at every appointment, including having to go through my medical history at nearly every other appointment. Egads, a doctor that does his homework?? What is the world coming to?

Doc Awesome let me ask my myriad questions and many of the answers were ones that I had expected. Based on my various hormonal tests throughout the last year, it's POF. And like any POF-er, it's entirely possible to experience spontaneous ovarian function and even become pregnant, but that occurs in about 1% or less of the POF population. Bummer.

That being said, Doc Awesome said I'm a fantastic candidate for donor egg, and that POF-er's in general usually are great candidates for DE/IVF. Doc Awesome also oversees all of the donor cycles at this clinic, so I'm in capable hands. They run pretty aggressive treatments for donors and say they get as many as 20 eggs in one shot. Their success rates are also well into the 50-60% range with DE. I asked if my Hashi's could play in a role in the success of DE/IVF and he said that so long as it's maintained, it's a non-issue.

As far at the actual cycle itself, once we pick a donor and she is screened (and the screening process at this clinic is intimidating bordering on absurd- his words, not mine), I'd stop taking my birth control pills and switch to estrogen only. Meanwhile, she'd go on a stim protocol and trigger. The day of retrieval, Larry obviously has to do his thing in a cup, I'll add progesterone gel (sounds goo-tastic!), and the eggs are retrieved from the donor. Depending on how Larry's army looks, we'll either let them do the rumba in the petri dish or directly inject his sperm into the egg via ICSI. About 4 days later, I would come in for a 10 minute procedure to insert either 1 or 2 embryos into my lady parts... and then, voila, the 2ww. Should I choose, I can also add an hour of acupuncture/pressure before and about 45 minutes of the same after the transfer. All told, apart from the actual transfer and using donor gametes, it's par-for-par hormonally and experientially as any other woman experiencing pregnancy.

I mean, I wouldn't even get the giganto box o' needles from the fertility pharmacy. I could avoid needles.

This is huge for me folks. Huge.

All told, we're looking at about $15-17K when you factor in donor agency fees, donor fees, legal feels, and donor screening. (It seems silly that insurance wouldn't cover donor screening, since they are medical procedures, but apparently it's the one medical part of the process they don't cover, which can run anywhere from $2-4K.)

I'm not going to lie: this is WAY cheaper and potentially faster than adoption. And given my age, my other relative health, there's a good chance of this working on the first shot. I know DE/IVF is no guarantee, but even Larry brought up the point: if it didn't work, we would potentially still have other embryos on ice to work with again, given the aggressive retrieval protocol they run on donors.

And you know what? I do want to experience pregnancy and birth. I have resolved that I'll still be just as much of a woman and mother if I don't, but the pregnancy experience is still important to me after all. There's also a good bit of halachic vaguery about the Jewish status of a child born via donor egg, so believe it or not, according to Jewish law, donor egg is easier to navigate that adoption. I wouldn't necessarily need a Jewish donor if pursuing DE/IVF, but absolutely would need a Jewish birthmother if pursuing adoption, domestic or international.

After talking the appointment through with Larry yesterday, I think we're changing our minds... again. Once we save up the money, we're going to go for DE/IVF. I don't think adoption is off the table for us completely, but just not as our first shot.


In sum: Doc Awesome is pretty awesome. (He even complimented me for coming in armed with all of my info noting that I was "a lot more researched than the average patient, which is a great thing.") And when we're ready to go for donor egg... we'll be going with him. I feel really confident in his ability and he has a wonderful candor and sense of professionalism.

So yeah, there you have it. Donor egg is back on the table... and I'm really excited about it. The timeline all depends on how quickly we can hide away the cash, but I think we could probably do this by the end of next year.

I suppose I should start working on a new blog header image this weekend!

A Belly Full of Fire, Part Two: The Wounded Healer

This is the second post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate.

Before I get started, I need to 'fess up about something kind of embarrassing. I thought I was being wicked creative with the title of this series, A Belly Full of Fire. Turns out, as I've gone through some of my research, this title isn't nearly as original as I thought it was. I need to fully credit Karima Hijane, Carly Heyman, Maureen Bell, and Mary Beth Busby's 2008 article from the Annals of the New York Academy of Sciences, "From Fire in the Belly to a Boiling Heart: Fuel for Participatory Research." When I went to start working on this post and leafed through my research, I felt like a putz when I saw their article title. But I like it, it fits what I'm writing about, so I'm keeping it.

---

"Some women... turn their pain into a passion to help others in similar circumstances. They become what has been referred to as 'wounded healers,' who can help others heal, and help heal themselves in the process."
Source: Amber R. Cooper, A.R., Baker, V.L., Sterling, E.W., Ryan, M.E., Woodruff, T.K., and Nelson, L.M., The time is now for a new approach to primary ovarian insufficiency, Fertility and Sterility (2010), DOI:10.1016/j.fertnstert.2010.01.016.

---

A Belly Full of Fire, Part Two: The Wounded Healer

I felt robbed. Cheated. Empty.

I would revisit the email from my doctor: "[The results], if they are to be believed, indicate that premature ovarian failure is the problem, not PCOS dysfunction/follicular maturation arrest as you, I and your previous caregivers had presumed." I thought that perhaps, maybe this time when I read it, the words would miraculously transform into "Nothing's wrong."

I started this blog as a way to channel these emotions, to fill some of the void that had been etched into my psyche. I found myself compelled to educate others as I started sharing research and informational posts. I wrestled with G-d for a little while, fighting battles between the lines, wielding my typed words as weapons and my faith as a shield. And before I knew it, the end of April had arrived, bringing with it my first National Infertility Awareness Week. I had all of this pent up frustration, anger, and anxiety, its kinetic energy boring holes into my spirit. Why not channel this energy, I thought.

The first thing I did was out myself on Facebook. The message stayed up there for about three hours before I chickened out and removed it. But in those three hours, I got three messages from friends of mine I hadn't talked to in years, each saying "I understand your journey because I'm going through it too." It was reassuring in ways that my blogging had not been. So then I reposted it with a sense of purposeful confidence. This was the first time I felt oddly positive about my infertility, in that I realized it could be channeled as an educational tool for activism.

I even wrote last April:

The ol' college activist in me is feeling inspired. I think it's because by involving myself in some kind of advocacy role, I reestablish a sense of control.

I keep pinpointing my video and this year's NIAW that launched my advocacy, but looking back through my older entries, I realize it started a year prior. My repurposed energy has refueled my spirit and sustained me through the darker times.

What I've only come to understand recently is that advocacy has helped to heal me. It's not like the emotional compartmentalizing, the escapist video game sojourns, the instant gratification of buying crap I don't need, or the diversional half-assed attempts to "find a hobby" or get in shape - advocacy has been like a bowl of chicken soup. It doesn't make the cold go away, but it fulfills you, helps you get better, and it's a welcome treat anytime you get sick.

I've had the privilege of being in touch with Dr. Lawrence Nelson at the NICHD, undoubtedly the leading researcher of POF/POI in the nation. He sent me the article containing the above quote and the words "wounded healer" resonated so strongly within me. Wounded healer is such an apt description for patient activists. If you take a look at even just a handful of executive directors of major infertility organizations and companies, they each have some deeply personal connection to infertility. With the silence that surrounds infertility, it only makes sense that former patients rise up to become leaders within the field.

Whether we are lobbying on Capitol Hill or connecting with other bloggers, we are each in our own way wounded healers.

The online ALI community has truly rallied around this concept, even if we don't formally call ourselves wounded healers. Things like the LFCA, blog hops, blog awards, online forums: we celebrate and support one another, we share tips and tricks and recommend books and websites. A friend comes to us and says, "A coworker of mine just told me she's about to do her first IVF cycle. Do you mind if I give her your information?" In helping to heal others, as Cooper, et al. notes, we heal ourselves.

It's about repurposing energy. Advocacy becomes a way of transforming pain into positive action. Suddenly you're finding little victories everywhere: your parents help you out at a volunteer telethon and send your organization a check for $250 (thank you Mom and Papa!). You get asked to guest blog or become a contributor. A senator to whom you sent a semi-form letter actually writes back and responds to your concerns, or their staffer calls you back when you leave a message to let you know that yes, your concerns will be passed on to the senator. An letter-writing campaign that you were a part of produces desired outcomes. These little victories add fuel to your reserves.

Are they an equivalent check and balance for a loss or a negative beta? Of course not. But at least you're not running on empty. And you use up that fuel to propel you forward, to keep you going.

I'll speak plainly: advocacy has saved my life. I don't walk around feeling so effing empty. I sat myself down and told myself if I can't create life, I can at least create purposeful living.

. . . . .

Today I wrote about advocacy as a way of personal healing. Take this weekend and invest in a little healing of your own. Come back Monday when I'll talk about how you can figure out what advocacy style best suits you.

Stay tuned for A Belly Full of Fire, Part Three: Which Direction Do We Swim?.

Photo by Clay Junell via Flickr.

A failed experiment

I love things "on a stick." Chicken, pickles, cheesecake, meat in general: these are usually not disappointments.

Peeing on a stick however, sucks.

/begin TMI: So, I'm not one to get up in the night and pee, which means, by the time I wake up, I have the flowrate of a Triple Crown champion racehorse. When trying to "hold the pregnancy test in the stream for five seconds" I usually end up peeing all over my hand. I know, I've read the forums: pee in a cup and dip the stick there. I've tried that, and still: pee all over my hand, as I'm usually still half-asleep while trying to hold an old coffee mug under my lady bits while peeing a small waterfall and not dropping the whole thing in the toilet. I have never been a graceful or coordinated woman.

/end TMI.

"Wait, why are you peeing on a stick?" you ask. Well, I got all Bill Nye with my reproductive system and thought I'd try an experiment.

So, you may remember WAY back last year when I was first diagnosed, my doc mentioned that it was possible for some women with POF to get pregnant naturally on their own. This happens in about 5-10% of women with POF, but unfortunately, there's no set protocol to predict who those 5-10% of women will be. Like regular babymakin', it's a crapshoot. So my doctor recommended trying an experiment: stimulating my remaining ovary with hormones to see if we could get it to ovulate on its own. There are two ways to do this: either using expensive recombinant FSH hormone injections (Gonal-F, Follistim, Bravelle and the like) or the much cheaper alternative, regular old' birth control. With the latter, my doc suggests taking it continuously for 3 to 6 months, stopping suddently, timing intercourse, and playing the 2ww game. Like he said, this works anecdotally, meaning he's only ever seen it happen 4 or 5 times in his whole career (my doc is no spring chicken).

I started back up on the pill in March for my HRT, and I've been pretty good about taking it every day, and having a faux pill-induced period every month. When I ran out, I forgot to get it refilled for a week. I was having some "could I be ovulating?" symptoms for a day or two, so post-haste to the bedroom it was. And I waited. I held out for 9dpo (or, as I now call it, 9dpn - 9 days past nothing) and tested.

One lonely blue line. I didn't even tell Larry I tested. (I did well after the fact, and he was a bit peeved I hadn't told him. Rightfully so, in retrospect.)

After a week of no early pg or approaching period symptoms, this past Friday evening I decided to test one more time, or as I like to call it, throw away $9 - because really, what else was I gonna buy with that money? But I needed to test because I had finally gotten my birth control refilled so I wanted to double check before I started a new pack.

Big. Fat. Negative.

This time I actually told Larry and he was waiting with me for those two minutes, and I think that's what actually added to the momentary sense of disappointment. We hadn't really held out any hope- we'd joked that yes, a pregnancy would certainly make life interesting in the context of buying a home right now, but that we'd take the miracle and run with it.

I've pretty much come to terms with the fact that I probably won't get pregnant, but damn if it doesn't sting when there's just one single blue line staring back at you, even when you've already made peace.

So, there's my failed experiment. I hadn't really posted much about it here in the event that it DID work- a surprise pg announcement is always fun- but since it hasn't and I started popping pink pills again yesterday morning, I thought a little lab study post-mortem was in order.

I wished it had turned out differently, but c'est la vie. Life goes on.

*lingering pause*

June ICLW: Elementally Speaking

Howdy! Thanks for stopping by for June's ICLW. (Learn more about the ICLW here and see how you can sign up for next month.) I've got a few previous ICLW intro posts to get you up to speed: ABC's of Me (November 2009), April 2010, and May 2010. For this month's intro, I think I'll try something a little different: looking at my life right now through the Four Elements. Intrigued?

The Four Elements of Me

Earth: What Grounds Me ~ Roots and Foundation
+ My husband, Larry: totally my rock, my love, my soulmate. We've been married for 2 and a half years. We were high school sweethearts from 1997... do the math. We've been together a long time and are still madly in love with one another.
+ My family: My mom, my papa, my sister Jasmine and her husband Neal - these are my core. Then Larry's mom, dad, and sister - just as much family as my own blood. And soon, probably sometime this week: Willow! My niece-to-be, the first grandchild, the little darling we've been waiting 9 months to meet. You can count on a post about her later this week since my sister will be induced on Friday :)
+ My faith: I'm Jewish. But I put an equal amount of faith in the goodness of humanity, the beauty that surrounds us daily we often take for granted, and in the sovereignty and power of the collective creativity of women. I ground myself by redefining the world around me, and walking forward with faithful steps in the world I've created.

Water: What Moves Me ~ Transition and Flow
+ My health: it's been in a varying state of flux. I have premature ovarian failure, diagnosed in April of 2009. I have Hashimoto's thyroiditis. I recently learned I've got degenerative arthritis in my lower spine. Oh yeah, I'm 28. Thankfully though, my thyroid appears to finally be stabilized after a year of ups and down, my my POF is being treated with HRT.
+ My job: Recently promoted.
+ My home: We are house-hunting, and hope to have a formal offer in to the seller by COB today.

Air: What Lifts Me ~ Joy and Celebration
+ Food, music, the arts, photography, flowers, Hell's Kitchen, Weeds, LOST, Radiohead, indie music, Vampire Weekend, MUSE, art house cinema, Bach Cello Suites, cooking, our trip Japan last year, camping, fishing, reading, writing, writing my book, RadioLab, The Moth, This American Life, taking the time to literally stop and smell the roses.

Fire: What Consumes Me ~ Passion and Perseverance
+ Having a family: The timeline has been pushed back significantly since we're buying a house, but we plan on adopting an infant domestically. We're skipping fertility treatments altogether.
+ My advocacy: I've recently decided that I am an health advocate, fighting for infertility treatment coverage and research. It all started with this video. The content of my blog has shifted slightly from mostly about me to more about the greater ALI blogosphere and what we can all do to be everyday advocates. I am also RESOLVE of New England's newest Board member on their Board of Directors!
+ My writing: I do it all the time. I've been keeping a journal in print or electronic form since I was in 7th grade. This blog is a continuation of that, but I'm starting to branch out to other places like Examiner.com and hopefully more paying opportunities. I'm also writing a book about my experience of converting to Judaism three years ago.

Looking forward to meeting new folks. Happy ICLW and happy commenting!

Image used with generous permission by the artist, Alida Saxon, copyright 2010.

Eggs-istentially Speaking

"Do you find your Judaism is influenced by existentialism?"

My mind was racing to remember the definition of existentialism. I had a vague idea, so I blurted out: "Probably. I've always had grand ideas about life, death, God, and human existence."

. . .

This is an excerpt of just one of many interesting conversations I've had in the last two weeks since my video went live. I was speaking with Dr. Lawrence Nelson, Principle Investigator on premature ovarian insufficiency with the National Institutes of Health. For a brief update on where this is going: he'd like to bring me on board with his POI Recovery Team, a group of endocrinologists, pyschologists, nutritionists, and spirtual advisors for women who are coping with POI. My video intrigued him, and we got into a very deep conversation about how I've managed to not only cope so well with my diagnosis, but in such a short time compared to other women with the diagnosis. He brought up this idea of existentialism, so I decided to refresh my memory on the subject.

The simplest definition I found was on a Jack London glossary page. Existentialism is "the belief that one shapes one's basic nature through the direction of life one chooses to live." Our suffering is a result of not being able to create meaning in our lives. The wikipedia article on existentialism provides a good summary as well, going into concepts such as Despair, Angst, Freedom, and Authenticity, all results of our struggle to define and create meaning.

You know, I've never thought of it this way so concretely, but I suppose I am an existentialist Jew. And in a lot of ways, the two complement each other. Judaism is so focused on the marking of time, of creating significance through life cycle events and daily ritual. As Jews, we are taught to craft meaning and our relationship to G-d through these ritual acts. How is that not existential?

. . .

But back to my witty post title.

I've been thinking about existentialism in the context of my infertility. I'm redefining myself, mother, family, etc. I'm crafting new meaning in my life. I'm carving out a path for myself, and while I'm not entirely sure where it's going, I'm confident in the value and fulfillment it will bring.

There are lots of times that I step back and look at my life from a distance, seeing from where I've come and at where I am now. I'm only 2 years away from turning 30, but there are moments when I feel like I've blinked and suddenly I'm about to turn 28, and other moments, like all of 2009, that felt like an eternity. This weekend was both my sister's baby shower and Mother's Day- talk about timing! (Also- both were amazing. The closeness I feel for my mom, my sister, my mom-in-law... it's overwhelming, as is their love and support for Larry and me.) And it was another one of those moments of reflection, of crafting meaning. And today, when I read about the heartbreaking passing of a member of the ALI community- Vee's husband Alex (link goes to a beautiful tribute by Gil, a good friend of their's)- and thinking of my own paranoid terror surrounding death... well, it makes you think. It makes you think that life is effing short, and you've got to make the most of it, right? Carpe diem and all that?

I realized it's about crafting that meaning and fulfillment. I've been saying that the Universe has been talking to me, and it's time I listen. I've decided I'm fully in a job search now for something in the health advocacy sector, and that it's time to leave higher ed. With virtually no direct experience but highly transferrable skills, this is not going to be easy. I've realized this is what I'm meant to do, and I'm only meant to do it because I made that meaning. Not the Universe or G-d. Just me. I think those Outside Influences helped guide me to my conclusion rather than handing me the answer.

I am reminded of another part of my conversation with Dr. Nelson last week. We were talking about Rachel, who in the Bible, was Jacob's most beloved wife and yet she could bear no children. She wept and prayed and fought with her sister and handmaids vying for favor in Jacobs eyes as they each bore him many children. Finally, her prayers were answered and she conceived and bore Joseph and then later Benjamin, Jacob's youngest son. But her prayer came at a price, and she died in childbirth with Benjamin. Infertility and maternal mortality, the two ends, two extremes of the spectrum, bookends, as Dr. Nelson put it, on the experience of human reproduction. The reminder that for beginnings there are endings. In life: death.

And all the rest in between is what we make of it.

A heavy post indeed this week, but I wanted to wrap my brain around some of these bigger thoughts brewing in my head for the last week.

Welcome to April's ICLW!

Hi there! If you're stopping by from ICLW, welcome and thanks for visiting. I think most of my pages and tags should be good places to get started to know a little bit more about this blog, but here's the quick and dirty reader's digest version with links to relevant blog posts to get you up to speed:

• Hi! I'm Miriam Keiko. The hubs is Ari Larry. We are so totally in love it's kind of ridiculous; we're high school sweethearts of 10+ years, only married for the last 2.5. We're Jewish, we love food, we love to travel. Oh, and we really want to be parents.
• I've got one ovary, and it's way busted (premature ovarian failure). My thyroid is also pretty busted (Hashimoto's thyroiditis). Our options, as I was told a year ago, is IVF with DE or adoption.
• Current treatments: birth control pills as hormone replacement therapy. I'm currently having my first "period" in over a year. I use the term loosely since it's really just withdrawal bleeding from skipping a couple of days of the pill. Also, I'm on Levoxyl for my thyroid. I've got a regular thyroid monitoring appointment on Thursday.
• After much ruminating, we've decided to pursue adoption! Like, literally finalized this decision a couple of weeks ago. We're still in the info gathering stages and have lots of questions. I'm definitely on the hunt for other adoption bloggers to follow.
• Next week is National Infertility Awareness Week. It's a cause near and dear to my heart.

I look forward to discovering new blogs and meeting new bloggers this week. I'm also going for Iron Commenter status, and working on What IF: Part Two, so I'm hoping to get in at least 2 posts this week, but it might be rough. Want to know more? Leave me a comment or shoot me at email (miriamshope AT gmail).

Happy commenting this week!

EDIT: In light of posting my What IF? video, I've put our real names up here and changed my "About Me" page.

Women and Falling Fertility: ABC News Article

Women and Falling Fertility: Women Lose 90 Percent of Eggs by Age 30 - ABC News

Saw this lined at Fark.com, of all places. The article is interesting. The comment thread, like any comment thread on Fark, is a disaster. Still, premature ovarian failure is a fairly uncommon diagnosis... but it makes sense why some women, if not born with enough eggs, would run out much faster. Average age of Dx for POF is 27. Go fig.

I feel like an old lady.

Follow up appointment today went well, for the most part. Latest b/w results:

Thyroid Panel:

• TSH (Thyroid Stimulating Hormone) = 5.69 uIU/mL [0.34-5.60] Status: High
• Free T3 (Triiodothyronine) = 3.25 pg/mL [2.50-3.90] Status: Normal (slightly lower than last time)
  
• Free T4 (Thyroxine) = 0.82 ng/dL [0.54-1.24] Status: Normal (slightly lower than last time)

My vitamin D is at 30, which they want levels of 30 or higher. So, right on target, for the most part.

What's next on my ever growing list of figuring shit out:

1. Re-up the Levoxyl to 88mcg. Retest in 6 weeks. Adjust as necessary (I may need to go up to 100 mcg).
2. Start taking a calcium supplement. 1200mg of calcium/day, 600mg at lunch, 600mg at dinner.
3. Limit consumption of soy and strangely enough, broccoli. These futz with my thyroid.
   
4. Continue the vitamin D supplements.
5. Bone density exam scheduled for July 24. Non-invasive, 15-min procedure lying down on a table, fully clothed. I can handle that.
6. Ari's semen analysis scheduled for Tuesday. Will know results by Thursday afternoon or Friday morning at the latest.
7. Call Dr. Gross Monday morning for list of contacts with RESOLVE fertility counselors.

We're holding off on starting me back on birth control until my thyroid is in the right levels. So, yanno, enough to be expected right now. He liked the fact that I've stopped consuming caffeine b/c it has made a dramatic difference in the number of hot flashes I get.

Women keep adding to their bone density up until about age 35, then plateau for a couple of years, and then start declining. Based on my POF, Dr. Gross speculates I'm already in the plateau phase, thus, necessitating the bone density test. I'll need to have it done every 3-4 years and course correct with calcium supplementation as appropriate. I feel like an old lady- I'm getting a bone density exam at 27, for fuck's sake. This is what like, 50 year-old ladies get.

The "ouch, that stings" moment of the appointment: calling the use of birth control to stim my ovary an "experiment." B/c in his 50+ year career, he's only had 5 or 6 pregnancies result from this method. In his career. Ugh.

Holy "cum hoc ergo propter hoc," Batman!

Allow me to diverge into a moment of logic, Cum hoc ergo propter hoc. Here's what Mr. & Mrs. Wikipedia have to say:

The cum hoc ergo propter hoc logical fallacy can be expressed as follows:

• A occurs in correlation with B.
• Therefore, A causes B.

In this type of logical fallacy, one makes a premature conclusion about causality after observing only a correlation between two or more factors. Generally, if one factor (A) is observed to only be correlated with another factor (B), it is sometimes taken for granted that A is causing B even when no evidence supports this. This is a logical fallacy because there are at least four other possibilities:

1. B may be the cause of A
2. some unknown third factor C is actually the cause of both A and B
3. the "relationship" is coincidence or so complex or indirect that it is more effectively called coincidence (i.e. two events occurring at the same time that have no direct relationship to each other besides the fact that they are occurring at the same time).
4. B may be the cause of A at the same time as A is the cause of B (contradicting that the only relationship between A and B is that A causes B). This describes a self-reinforcing system.

In other words, there can be no conclusion made regarding the existence or the direction of a cause and effect relationship only from the fact that A and B are correlated. Determining whether there is an actual cause and effect relationship requires further investigation, even when the relationship between A and B is statistically significant, a large effect size is observed, or a large part of the variance is explained.

Right.

So, in putting on my Dr. Google hat today, I discovered that Hashimoto's thyroiditis (A) can not only cause POF (B):
"One other cause of infertility in patients with thyroid disease is the uncommon condition of primary ovary failure"

...but POF (B) can cause Hashi's (A):
"Infertility is the result of this condition [POF], and is the most discussed problem resulting from it, but there are additional health implications of the problem... There is also an increased risk of heart disease, hypothyroidism in the form of Hashimoto's thyroiditis..."

*facepalm*

So, my high ATA count and negative Fragile X results are good, but that doesn't mean I can have my own genetic children yet. B/c, and I suddenly realized today, I could have a totally busted ovary regardless. We could be past the point of no return in terms of my own eggs. My guess is that my doc is going to recommend (hooray!) more blood tests on Friday.

TMI: Hot flashes abound!

Oh em gee... if this is what normal menopause is like, then women of the 40-55 age range, you have my utmost respect.

Holy jeebus... I've been having hot flashes every day this week. And night sweats. I'm not sure which is worse yet. Add to the unseasonably warm weather in New England (it got up to 92° yesterday), and the complete lack of ventilation in my office... I am sweating up a storm! And they happen so randomly. I am practically chugging water at my desk to keep from feeling faint. Last night I got paranoid and thought maybe I've just been running a fever (yanno, that whole swine flu thing... can I just add how annoying the word "swine" is? Can we just call it pig flu?), so in the middle of a hot flash, I grabbed the thermometer. Nope, no fever. Just a hot flash.

I've also had 2 migraines in a 7-day period- not cool. Not cool at all. I'm not sure if Monday night's migraine was hormonally triggered or not- I did have a bit too much aged cheddar at lunch and again as a pre-dinner snack, so that might have done it.

Arieh wants me to call Dr. Gross and see if he can prescribe me any hormones right now to ease the symptoms, but I'm reluctant to add things to my system while I'm still in a diagnostic phase. The only supplements I'm taking right now are a women's multivitamin in the evening, and a Vitamin D pill with my Levoxyl in the morning. Dr. Gross did acknowledge that HRT is the way to go eventually, and we'll have to work very closely to determine the lowest dose of estrogen I can take so as not to trigger a) migraines or b) a stroke. I will find it strangely hysterical if I get put on the pill. Hell, I think it's hysterical that the pill could get me to ovulate if I end up having just adrenal issues. What's even funnier is that the birth control pill I had taken for 8 years may not have actually done what it was supposed to at all, and I actually carried a higher risk of getting pregnant this whole time.

Go fig. ;)

Interestingly enough, the hot flashes have been 90% of my symptoms. More headaches, a few more migraines than normal, and general insomnia, but that can be written off as stress. Anyone out there have any good recommendations for dealing with hot flashes?

Another Video About POF

Here is the full interview featured in the clip I posted a few down below, with tons more info. Very helpful!

Where do babies come from, anyway?

The ovaries are one amazing set of organs, I have learned in the few weeks following my Dx. Both reproductive and endocrine - you might call them the command center for the hormonal workings of the female body. Before you can understand anything about premature ovarian failure, you need to understand exactly how the female reproductive and endocrine systems work.

Short version
Uterus builds up endometrium (lining) in anticipation of release of egg. Ovary releases egg. If sperm is in wait, egg should fertilize. The fertilized egg travels down the fallopian tube to the uterus and implants in the endometrium. Cue: pregnancy. If there is no sperm to fertilize the egg, then the egg and endometrium are flushed out in that lovely process known as menstruation. And then the whole process starts over again.

For the visual learners

Image credit: Fertility Plus (http://www.fertilityplus.org/faq/hormonelevels.html)

A Hormonal Primer
Let's take a look at exactly what's happening hormonally during a woman's cycle. If you've ever wondered why some women might get a little "moody" during their cycle, well, we've got a LOT going on at once hormonally in our bodies :)

Follicular (Pre-Ovulatory) Phase
The pituitary gland begins releasing FSH (Follicle Stimulating Hormone). This primes the ovary to start maturing its follicles, the individual part of the ovary that releases the eggs. During this phase, several follicles actually develop at once, on both ovaries, but only one follicle will mature and release an egg in most normal circumstances. Estradiol (estrogen) is released by the ovaries during this time, and aids in the building of the endometrial lining of the uterus.

Ovulatory Phase
As estrogen levels peak, it triggers the release of LH (Lutenizing Hormone) by the pituitary gland. Of all the developing follicles, one will mature and burst, releasing the egg. It is currently unknown how the body determines which of these follicles on which ovary will release an egg. The ruptured follicle then becomes the corpus luteum (Latin for "yellow body"), and begins to release progesterone. Progesterone is a heat-releasing hormone, and causes a woman's BBT (Basal Body Temperature) to rise. It's also responsible for hot flashes. Progesterone is essential to ensuring implantation of the fertilized egg and to sustain pregnancy. If the egg is fertilized, it will take about 7-10 days to implant in the uterus. Once implanted, the fertilized egg will begin to release the hormone hGC (Human Chorionic Gonadotropin). This is the hormone that POAS HPTs (pee-on-a-stick home pregnancy tests) are designed to detect. The corpus luteum will continue to release progesterone, until the placenta develops and takes over progesterone production for the duration of the pregnancy.

Luteal Phase
If the egg is not fertilized, the corpus luteum will begin to disintergrate, and thus, decrease the amount of progesterone released. The drop in progesterone causes a second rise in estrogen, which then triggers the uterus to shed the endometrium, inducing a woman's menses. And then it starts all over again.

What does this all mean for me?
Well, my remaining ovary isn't working anymore for some presently unknown reason, so NONE of this is happening in my body right now.

Understanding Premature Ovarian Failure

Premature ovarian failure was originally termed "premature menopause." The term premature ovarian failure more accurately reflects what is happening within the body. Essentially, if ovarian function ceases before age 40, it's considered POF. Here's a very informative news segment from October 2008 that serves as a great overview of POF:


Fast Facts: What Is Premature Ovarian Failure?
(Source: International POF Association Fact Sheet)

• POF affects about 1-4% of women before age 40, or about 250,000-1 million women nationally.
• Women are generally born with enough eggs in their ovaries so that they ovulate one each month from puberty until about the age of 50. At that time, the supply of eggs is used up and menopause occurs. But, in girls and young women with POF, something has happened to the supply of eggs in the ovaries at a young age. It could be a loss of eggs, a dysfunction of the eggs or the removal of the ovaries at a young age. Unlike menopause, this is not a natural occurrence. This loss of ovarian function is occurring at too young an age to be considered a natural, although premature, menopause. Premature Ovarian Failure usually occurs in women under the age of 40 and can happen as early as the teen years.
• Many times, the cause of POF is never determined, but can be traced to genetics, autoimmune disorders, or surgical intervention.
  
• About 6-8% of women with POF will conceive naturally, however, many build families using egg donors/IVF or adoption.
• Currently, there is no known way to induce the ovaries to begin ovulating naturally again.
• POF carries increased risks of osteoporosis and heart disease because of the decreases in the reproductive hormones that protect women during their childbearing years. HRT (hormone replacement therapy) is the recommended treatment for women with POF.

For a very detailed document about POF, I highly recommend reading IPOFA Frequently Asked Questions, found here as a PDF. It is quite comprehensive and is a good starting document to really undestand the complexities of POF.