Wednesday, February 29, 2012

A book I'm taking seriously

Thanks for your comments on my last post, women. I know blogger has been a jackass recently for all commenters, and has pushed some women over the edge completely. Some of them have even resorted to switching to wordpress and/or using headphones in an attempt to regain sanity. I can't blame you, Bunny. I'm going to stick it out with blogger for a little while longer, but I may have to join you on the more user-friendly side. I've at least disabled the captcha requirement on the comments.

I haven't heard back from the radio station about my letter, except a short email to say that they've received it. I listened in last Sunday, but didn't hear the subject of donor eggs revisited. Sometimes they skip a week before they decide to read listener comments, so maybe they'll talk about it this Sunday. Or maybe they are avoiding the whole thing because they are so ashamed about putting crap* on the air. I can sympathize. I would be embarassed too.

I mentioned in a recent post that I have been reading Alice Domar's book called Conquering Infertility. (Now, I realize that many of my readers have conquered infertility. I am amazed and very thankful that you still read my blog and offer me so much support). I know that some of you have read this book and I think it is from reading some of your recommendations that I finally got it.

Frankly, I wish I had read this book 3 years ago.
It's not that there is any rocket science in it. I think that for most seaoned IFers, there would not be unexpected information found in the book, although I did learn new things reading it. I think one of the facts shared in the book that's given me pause for consideration is the fact that from her reading of the literature and her clinical experience, she identifies depression as most deleterious to the process of conception. She sees it as more harmful than stress or anxiety. She doesn't say: if you're depressed, forget about getting pregnant. It's more that she sees that resolving an epsiode of depression or reducing depressive symptoms as a primary target of intervention. (oy vey, that's clinical speak). That certainly got my attention.

The content of the book is presented in such a way to normalize the experience of women struggling with infertility, which is darn useful. I had already made this rule for myself a long time ago, but it was still validating to read that selective avoidance is a perfectly healthy strategy to utilize when going through the crisis of infertility. My "no baby shower" rule has served me well, indeed. It was nice to read about other small but significant ways she suggests to cope with IF. For example, it made me think about asking my close friends to let me know about upcoming pregnancies in a specific way that may help me cope better with this difficult situation (and let me be clear here, the difficult situation isn't that my beloved friends get pregnant and have babies, but that pregnancy announcements feel devastating and that when they happen, I feel the desire to share in the joy of the news and at the same time honour my grief. And then just feeling my grief makes me feel guilty because I can't be 100% joyful for my friends.)

What I'm appreciating most about the book is the very structured plan she suggests we take to reclaim power over our lives. IF has certainly felt like a thief and a dictator to me, and honestly, I feel ready for a coup d'etat (which is French for coup d'etat). So, without too much pomp and circumstances, I have taken heed of her suggestions. One important change I've initiated comes from her assertion that it is important to find ways to achieve the relaxation response each day. Starting from her list of suggestion, I've made my own list of things I can do to reduce my feelings of tension and shift from being driven hard by my sympathetic nervous system to letting my parasympathetic nervous system take over for a few minutes. I've learned so many ways to feel calmer and more connected with myself and in the present moment. Why was I not using them?


Photo by Sarah Bettencourt
see her shop on Etsy

I'm in my second week of taking time each day for mind/body activities. My go-to is yoga. I've been practicing it for almost 10 years and it feels like my central pillar in terms of ways to reach a state of relaxation. I've also been journalling more frequently, doing breathing exercises, meditation, etc. I am far, far from feeling like a million bucks. In fact this week, I feel terrible emotionally. But I have decided to stick with it. Give it a full month before I pass any global judgement. And so far, I know that when I come home and go straight up to my room for my yoga practice, I feel calmer.

So, just to come clean, I work for Domar's publisher and I had been infiltrating myself into this community for the past 3 years just so I could sell you a book. So please go buy it or I'll get fired**






*And by crap, I mean third-rate, under-researched, over-sensationalized journalistic bullshit.

**The book publishing industry is how I moonlight, since you know, my work is really not challenging me quite enough.

Monday, February 20, 2012

hot under the collar

In our house, we listen to the radio a lot. We exclusively listen to the Canadian Broadcasting Corporation (CBC). On Sunday, a program aired a piece about egg donation. In the midst of my busy Sunday morning, I happened to be listening at the right time. I was very intrigued by the fact that the CBC was doing a piece on this and was eager to hear what it had to say. The title of the documentary was "Wanted: Egg Donor in Good Health", which you can listen to by following this link. It's about 30 minutes long, so you may not be able to hear what this journalist has to say about egg donation in Canada, but let me give you a synopsis.

The author basically depicts the dark side of egg donation in a country where the purchase of gametes is illegal. Using an extraordinarily biased sample, she depicts egg donation as an abuse of donors' generosity, at the expense of their health. She also lurches to the conclusion that severe OHSS is commonplace. Of course, her story is built on the 15 women who contacted her to talk about their harrowing experiences as donors. What about the hundreds or thousands who didn't contact her to talk about their fairly pedestrian experiences? As you can see, I was incensed by documentary, and have since written a letter to express my displeasure. I have included it below.

As the letter says, it was clear that the author focused on medical incompetence, which frankly, happens everywhere, and in every field of medicine. At some point, a bioethicist comes on and says that we cannot look at human beings as a collection of consumable parts, or something like that. When Mr. A and I listened to it together later that evening, he winced and said that he wanted to vomit. We happened to visit Sattva later that day and as I hugged her hello,  I once again was flooded with gratitude for her magnificent existence and for her friendship. We feel sad that we will not get to meet our anonymous donor at SG, and we have not selected her as yet, but we feel enormous gratitude to any woman who decides that donating eggs is something she would like to do. I recognize that there is potential for abuse in organ or gamete donation. But medical malpractice tends not to be the rule, but to be the exception.

I am left feeling very angry that people in my part of the world have listened to this documentary and now walk around with gross misconceptions regarding DE IVF based on this author's work. And I feel like this has the potential to further isolate us and other couples who have or will undergo DE IVF. That is the last thing any infertile couple needs, to further be marginalized because the means by which they seek to remedy an awful situation is portrayed as dangerous and abusive.

The decision to go for DE IVF is not an easy one, folks. Those of you who have made it or are making it right now know this in every fiber of your being. I think back about how difficult it was to see Sattva in any discomfort or pain throughout this process and it makes me ache. It has not been an easy decision for Mr. A and I to accept Sattva's offer. It has not been an easy decision for Mr. A and I to decide to work with SG. But as of right now, DE is considered a safe medical practice that comes with some risks. In Canada or in the US, donors are not coerced into making a donation (although I imagine that sadly, there could be circumstances where this happens). They are accepting the risks as they see the benefits outweighing those.

I could go on, women. I still feel livid. But let me stop here. What follows is the letter I sent to the radio station (with my real name attached: yikes!). It was worth outing myself on this though. I just had to speak out. 


****************************************************
 

My husband and I have struggled with infertility for years because of ovarian failure. We have undergone one Donor Egg IVF cycle in Canada, with the help of a known, altruistic donor (a close friend). It resulted in a successful pregnancy that sadly ended in a miscarriage at 12 weeks. Nevertheless, this experience was a positive one for our donor and for us. We are now working with a US clinic to continue down the path of using donor eggs to have a child. Thus, we listened to your documentary “Wanted: Egg Donor in Good Health” with much interest, but felt very disappointed at how negatively this process was portrayed.
Alison Motluk ‘s piece is a work of journalism and not a work of science. She hints at the fact that her sample could have been biased. It was in fact extremely biased, rendering many of her observations unfounded. This sampling bias leads her to conclude that Ovarian Hyperstimulation Syndrome (OHSS) frequently occurs in egg donation, while epidemiology places the risk of severe OHSS at 0.25% to 5%, depending on the definition of severe OHSS. I can appreciate that her sampling method would have been extremely limited by the privacy legislation in effect across all Canadian provinces. Had she had access to medical records, she might have found that most cases of donor egg procedures that do not involve immediate adverse consequences for the donor. Ms. Motluck does correctly identify that there could be long-term risks associated with assisted reproductive technologies, although science has not yet identified those with any certainty.  
When we underwent the egg donation process in Canada, our medical team clearly outlined the potential risks to our donor, insisted on having her seek private legal council, and had her and her husband undergo a psychological consultation so that she and her husband would understand the implications of donating her eggs. Our medical team strongly advised us to find a donor who had completed her family, as there could be unknown risks to the donor’s fertility, even if those risks were understood to be remote. The medical process described by donors in Ms. Motluk’s documentary was discrepant from our donor’s experience on many levels. During the treatment cycle, our donor was monitored every two to three days and measures were taken to avoid OHSS, even at the expense of obtaining fewer eggs.  The Practice Committee of the American Society of Reproductive Medicine has put out guidelines for gamete and embryo donation (2008), which puts the health and safety of donors as the highest priority in this endeavor. For example, Ms. Motluk’s documentary depicts a situation where injectible fertility medication (gonadotropins) are mailed to a donor who is expected to inject herself, and who must subsequently present herself to the medical clinic only on the day of egg retrieval. This is preposterous: any physician in the industry would tell you that close monitoring is required to evaluate the changes in follicle sizes and the state of the ovaries as they are being stimulated.
Sadly, the documentary “Wanted: Egg donor in good health” zeroed-in on examples of medical incompetence, rather than focusing on a fair assessment of the egg donation process. Listeners were likely left with not only misconceptions regarding egg donation, but also an incredibly negative impression of the overall assisted reproduction field. For couples like us who are already socially isolated in the midst of our struggle, valiantly trying to overcome our difficult circumstances through the medically safe option of egg donation, her message was an assault. The erroneous ideas she left in the minds of listeners will be those we, as an infertile couple, will have to face when we are judged negatively for our actions by the misinformed, and will decrease the likelihood that couples in desperate need of eggs will find a donor. Instead of focusing on the medical incompetence of a few doctors, Ms. Motluk’s time would have been better used debating the advantages and disadvantages of the Canadian Human Assisted Reproductive Act, and how it could be improved to everyone’s benefit.

Thursday, February 16, 2012

the red fleece

My beloved friend Oat, who often comments on this blog (and is the apple of Roccie's eye), likes to come up with absolutely fantastic labels and titles for things and important events in her friends' lives. For example, when I had cervical dysplasia in 2004, she referred to the whole thing as 'the cervical odyssey.' Or when we dream of living closer to one another (she is in Boston, I am in Canada), she has come up with a vision of this border-straddling housing/working complex named after the Internatio.nal Hou.se of Pan.cakes. Her creativity is like a creek in spring. Oat likes to talk about the uterine lining as the red fleece, where embies go to nestle.

A propos my red fleece, here is the scoop.

Whilst I was whiling (I should say willing) away the hours at work yesterday, Mr. A was in receipt of a very important phone call. It turns out that my lining is apparently just great. What. Thick enough and triple patterned. How 'bout that.

I did have one or two moments of thinking they might have sent the wrong pdf file to Washington. You know, lining from patient Augustina instead of patient Augusta. An honest error. So easy to make.

Trust is just as hard to build as hope. Harder even.

The SG folks have said that we just need to get the doctor's final clearance, and then we can proceed with selecting a donor. Wow. And I kept wondering all day yesterday whether they would tell us that we have to do a second mock cycle. Apparently not. 

Wednesday, February 15, 2012

thickening slowly

Made the treck to FTT again this morning for 7:30 am monitoring (which is a 6am departure). Even though I only woke up 15 minutes earlier than I normally do, I didn't get my time at the gym, so I am feeling more groggy. The clinic was much less busy than it was on Friday, as expected (I guess it's common for clinics to keep monitoring and precedures at a minimum during the weekend so they pack 'em in on Fridays and Mondays). It was the medical fellow present at last Friday's u/s who did this morning's u/s. He called me dear, as he was waving that wand around trying to find my ovaries for 10 minutes until he pronounced them inactive. DUDE. Do I have to walk around with a sign on my forehead? OVARIES OUT OF ORDER (may not be visualzed on ultrasound). Whatevs. SG wants to know about the ovaries and exactly what they are doing. Exactly nothing, is the answer.

I asked the fellow what the lining measured and he said 9mm, at which point I uttered a little 'yeah' accompanied with a fist pump. It was warranted, you will agree. Upon seeing my reaction, he looked at the notes again and corrected himself. 7.5mm. Ah darn. That's still on the thin side, despite the 2mgs of estrace twice per day taken vaginally since Friday, and the 2 extra doses of Dele.strogen. Not sure what SG will say about this. I guess I'll find out later today.

Thank you for your comments on my last post. As some of you know, I was working with a TCM doctor (known here as Dr. Ninja) in preparation for my last DE cycle and received regular acupuncture. I have been huming and haing about going back to Dr. Ninja and so far have not pursued it, although this mediocre lining growth and your urgings to get thee to the acupuncturist is tipping me toward the other side. The two main reasons for not going back to Dr. Ninja have been the following:

1) he will require that I take his teas (herbs) since it's a main form of treatment in his practice, and SG advises against taking any herbs (well, I'm guessing the thyme on my shiitake omelette might be ok). My IRL friend who struggled with IF went to see him and had this argument with him at some point. Stretched tautly between Eastern and Western ideologies is a hard place to stand for a patient. I didn't want to put myself in that situation if I didn't have to.

2) Dr. Ninja will tell me to stop drinking coffee. (Go ahead and judge me. I'm ok with that.) I've given up coffee before and I will again if I have to, but it makes my days a whole lot less pleasant and wakeful. I reduced my intake to one large cup a day starting in January. And again this week, I went down to half caf, half decaf. Can't say I like it, and I supplement with green tea in the afternoon, but I am aware that this may help my chances so I am cutting down.

That being said, Dr. Ninja and his team take good care of me, and I really enjoye he acupuncture I've received there. To add to that, I've been reading Alice Domar's book, Conquering Infertility and it's making me appreciate to an even greater extent how much I need to take EXTRA good care of myself. I think I'll call Dr. Ninja's office today.

Thanks for your continued and amazing support, women.

Friday, February 10, 2012

thinly

While thin is a nice adjective to hear about one's figure, it certainly is not a great word to hear about one's uterine lining. Am I surprised? Nah.

The lining was only 6.5 mm this morning and not anywhere in the neighborhood of triple striped, or whatever that description is. Dr. RE used compact, or dense to describe what it lacked. He said it took a long time to visualize on the u/s, noting that good linings are identifiable within 3 seconds (for my and the medical fellow's benefit).

Our clinic changed their monitoring venue at the end of April last year, so I never actually went to their new digs. Women used to have to go one place for the bloodwork, and then drive up to the hospital for the u/s. Hospital parking was an expensive and time consuming ordeal.* At the new outpost, parking is free. And the location is closer to the highway, which is great when one is driving from afar.

I was so pleased to see that the physician on call was Dr. RE. It could have so easily been a different one, as there are 5 or 6 of them who are part of the team. I hadn't seen him since our big discussion in the fall and felt immensely reassured to see him and talk to him. He asked how the injections were going and talked about the fact that he wished he could prescribe this, but Dele.strogen isn't available in Canada. We both quickly agreed that the Dele.strogen was insufficient and that I would be back there shortly for more monitoring.

You'd expect to find me frustrated and disappointed. But I'm not. I've just been feeling grateful all morning. Grateful that I have such a great doctor, and a great team who have been helping us on this difficult journey. Grateful that we are able to go to the U.S. for DE IVF through the financial help of our parents. Grateful to have such amazing friends who have supported us, loved us, placed innumerable international phonecalls to keep connected, wiped our tears and made us dinner, and who continue to be there for us despite our protracted and thus far unfruitful struggle. Grateful for all of you women who find it in your hearts to check in with me on this blog or through email and also share your stories. You give me such vivid examples of how one fights this hard fight, and I draw much strenght from seeing how you pick yourselves up from the depths and find it in yourselves to keep fighting. I am grateful for being healthy enough to attempt another DE IVF.

I am awaiting further instruction from SG. I suspect that we will be adding estr.ace PV and that I will head back there for monitoring next week. I may also be driving over the boarder soon to pick up more Dele.strogen. I will keep you posted.


*the most salient example in mind is the one of the day of Sattva's retrieval, when I lost my parking ticket and realized this only once I got to the gate. I had to run into the parking office and pay the full day's worth of parking, not to mention hold up traffic for 10 minutes. But I didn't care too much. I had my very dear Sattva in the car and 6 eggs fertilizing upstairs.

Monday, February 6, 2012

Clarified like butter

Once again, I am amazed by the power of this community. Your comments on my last post(s) really helped calm me down at a time of loosening hinges. It helped to read your encouragements to contact the clinic (I tend to feel disentitled), and to know that some of your educated opinions and factual knowledge pointed to the fact that IM is more potent than pills. Thank you nurse Sans Cigogne (translation: stork-less) who could also add from her nursing background and who wrote it in English for everyone's benefit (she is from my part of the world, where most of us speak French).

I emailed our nurse this morning who was quick to reply (bless her) by saying that my hypothesis 1 was correct. She said that they would supplement with estr.ace vaginally if needed. In the mean time, the girls are getting more sore by the minute, telltale sign that there are womanly hormones flowing in there.

Friday is the bloodwork and u/s. Curious to know how things will look in there.

In the mean time, if you have a moment, please go give my friend Patience a big hug at Searching for the missing piece. She just found out that her little bean's heartbeat stopped. Patience is an IF veteran and by golly, we were all praying that this was her take home baby. I am so sad that it is not.

Thursday, February 2, 2012

Mocking Me

Got home from my day at work, and was slurping golden borscht made by Mr. A, when he asked me whether I could feel the injections. Well. Maybe there are a few signs.

If you knew Mr. A, you would know that from asking "how does it feel" to talking about math is a very short distance. In fact, as far as he is concerned, everything is a short distance to math.

I messed up my last equation. And now I am in the vice grips of WORRY.

Let's revisit the equation, but this time with increased accuracy, thanks to Mr. A who knows me well enough now to always check my math.

The dele.strogen has 20mg/ml. The dose is 0.2ml per injection, or every 3 days (and not 20ml per injections - man, that would require an IV, almost). 

2mgs estra.ce t.i.d., PO + 2mgs est.race, PV + oes.clim patch 5mg every three days < 20cc of Dele.strogen IM, every three days.

The reduced equation would be:

6mgs PO + 2mgs PV + 5mgs every 3 days < 4mgs every 3 days

To reduce it to daily dosage would be:

9.67mgs < 1.33mgs

Wait.

that equation doesn't work.

I envisage one of two things going on:

Hypothesis 1
There is one heck of a difference between injectable estrogen (estradiol valerate), and estrogen in pill form (estradiol-17B) plus estradiol transdermal.

Hypothesis 2
the doctor omitted to read my file, which clearly pointed to the massive quantities of estrogen needed to produce a somewhat acceptable lining in this particular patient.  

As far as hypothesis number 1 goes, well it's entirely possible that estrogen that has to be handled by your liver and estrogen that has to come through the pores of your skin and that of the wall of your vagina can be much less efficient than estrogen that comes directly through the muscle, and into the bloodstream. So, hypothesis number 1 is viable, even though I still have some doubts.

Hypothesis number 2 makes me nervous. Hence the vice grips of WORRY. What if this mock cycle is completely awash because the estrogen is entirely insufficient. And we have to do a second mock. And a third mock. (notice the catastrophizing going on here, ladies). Clearly, I will be made a mockery.

If any of you have any insight, please share. I am clearly lost here. I am making puns for goodness sake.

mocking continues

I think I may have ignored important information to solve the equation I posted on my last entry. So, on the little dele.strogen vial, it says 20mg/ml, an important clue for us to solve this equation. To recap:

2mgs estra.ce t.i.d., PO + 2mgs est.race, PV + oes.clim patch 5mg every three days < 20cc of Dele.strogen IM, every three days.

If I divide the dosage to daily doses, and factor in the 20mg/ml information, we get this:

6mgs estr.ace PO + 2mgs PV + 1.67 oesc.lim < 13.33mg dele.strogen

                                      or

9.67mg < 13.33mg

Equation solved.


Still, all the math in the world doesn't prevent me from wondering how my body will react to this new form of estrogen. I am trying to reassure myself with reminders that my uterus is responsive to estrogen. Obviously not exactly like a uterus that has been stimulated by naturally occuring estrogen since the age of 11, but still, I have taken estrogen in many forms (alas, not yet in the form of dark chocolate) and had an "adequate" uterine response.

I think my fretting comes from the association I have with injections. I wasn't blogging back in 2009 when we started our treatments, but here's a synopsis. We were gearing up for an IUI in June 2009 and I was taking menop.ur. I diligently injected myself everyday and showed up for monitoring but NOTHING was happening. The u/s and the bloodwork showed that my body was absolutely NOT responding. Like radio silence. LH and FSH receptors probably never developed on my ovaries because of my unusal history, and so injecting the two did absolutely nothing. Alright, Dr. RE said, let's try the estrogen priming protocol plus injections. After a few months of priming with estrogen, we tried meno.pur injections again in September 2009. Again, nothing happened in there. Both times I could sort of tell that there wasn't much happening in my body. The subtles signs weren't there. It just felt like silence. I think I've associated injections with silence, with failure.

This is different. I'm not injecting gonadotropins. It's straight estrogen, to which *remember* my uterus tends to be responsive. My boobs are a bit sore. I'm taking it as a good sign. I won't know anything until I go in for monitoring on Feb. 10. And then the RE at SG can determine whether he likes that better than the estra.ce/oescl.im combo I was on.