Shaking It Out

My favorite current song is Florence + The Machine's "Shake It Out". After four and a half years of trying to have a baby, failed IUIs, IVFs, and miscarriages, with diagnoses of both male and female factor infertility, I feel like I need to "Shake It Out".

After our last failed embryo transfer in November, with no frozen embryos left, and at almost 36 years old, the odds becoming increasingly stacked against us having a our own genetic child, spending $20,000 a pop on each additional IVF attempt feels like a massive waste of money. Unless something else changes to improve our odds, I don't see us doing more IVF attempts using my own eggs. Neither does the Wacky Wicketeer. To be honest, I don't really want to put my body through that again for these odds. I have no idea how some women go through it seven times. Two has done me in. I can feel my organs, different pieces of my body, rebelling against the process; Screaming at me to stop.

Right now we're not sure what family-building route we will take. Donor egg? Donor embryo? Adoption? There's still no goalie in place, but with our odds, we know better than to get our hopes up that a) we'll get pregnant, plus b) we'll stay pregnant. Miracles do happen, but in the meantime we are researching our options, and taking some time to "shake the devil off our back", as Florence might put it.

Take a minute to enjoy the video and read the lyrics. I think we can all use an occasional "Shake It Out"!



Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play
And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It's always darkest before the dawn

And I've been a fool and I've been blind
I can never leave the past behind
I can see no way, I can see no way
I'm always dragging that horse around
And our love is pastured such a mournful sound
Tonight I'm gonna bury that horse in the ground
So I like to keep my issues drawn
But it's always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah

I am done with my graceless heart
So tonight I'm gonna cut it out and then restart
Cause I like to keep my issues drawn
It's always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah
And it's hard to dance with a devil on your back so shake him off

And given half the chance would I take any of it back
It's a fine romance but its left me so undone
It's always darkest before the dawn

Oh woah, oh woah...

And I'm damned if I do and I'm damned if I don't
So here's to drinks in the dark at the end of my road
And I'm ready to suffer and I'm ready to hope
It's a shot in the dark and right at my throat
Cause looking for heaven, found the devil in me
Looking for heaven, found the devil in me
Well what the hell I'm gonna let it happen to me

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah


Florence And The Machine Shake It Out lyrics found on http://www.directlyrics.com/florence-and-the-machine-shake-it-out-lyrics.html

My Organization Memes

Hello, dear readers, and happy 2012! Again, it’s been too long since my last post. I have so many ideas for posts backed up in my head, I hardly know where to start. So, I asked around, and here’s where I’m starting: My organization memes.

I do writing, legal and consulting work as an independent contractor from home. So, I make my own work schedule and limit my hours to only part-time. I also do volunteer work for my Church, run a local book club and co-run a local peer support group for infertile women. The point being, I have lots of stuff to do, but no kind of a regular schedule, and much of it not bringing in any money. Since that leaves the Wacky Wicketeer as the primary breadwinner, I also feel it’s my responsibility to be the primary homemaker. Yes, I am a proud housewife!

My unorthodox schedule lends to time passing without much housekeeping getting done, either because it doesn’t occur to me to do it, or it doesn’t have the pressure behind it that makes it a higher priority. So I thought why not use memes? You know, the way bloggers do for regular posts like “Wordless Wednesday”, “Meatless Monday”, etcetera. So here’s what I came up with:

Mail, Media & Medicine Mondays – This helps me make sure I check my two mailboxes a minimum of once a week, and that the mail actually gets sorted, including any coupon clipping. It also is when I schedule social network status updates for the dozen or so accounts I run as a volunteer. Third, it’s when I sort all my pills out into their little weekly/daily labeled boxes.

Tasty Tuesdays – This reminds me to do my meal planning and grocery shopping.

Wash, Water & Weigh-in Wednesdays – Wash refers to laundry. Of course, I can’t do ALL my laundry in one day, but this reminds me to get it started, wash those things I might put off, like extra linens, and do any leftover folding, hanging and ironing. Wednesdays are also for watering the potted plants and weighing myself.

Thoughtful Thursdays – I try to focus on reading, research and writing.

Fresh Fridays – Fresh is just another word for clean. Each Friday I pick a room to make “fresh”. My house has 12 rooms plus the hall/stairs/landing area, so it’s a lot for one person to clean. Having a day each week devoted to one room is supposed to help me keep up without feeling overwhelmed. Having it be a last-minute decision as to which room also allows me to pay more attention to rooms that need it. Check back with me in a few months to see if it’s working!

What do you do to help keep yourself on task and accomplish those mundane things that could easily slip by, like housekeeping?

Also, since I'm so behind on blogposts, what would you like me to post about?

Wave of Light: Pregnancy & Infant Loss Awareness Day

Saturday, October 15 was/is Pregnancy and Infant Loss Awareness Day. To honor those babies gone too soon, many of us participated in a "wave of light" by lighting candles at 7 pm in our time zone.

To mourn and honor the three babies we've lost, the Wacky Wicketeer and I named each one after a Saint, in the Greek Orthodox tradition of naming babies. Also in the Orthodox Christian tradition, we have icons of Saints in our home, mostly in an area set up specifically for prayer. The patron Saints of our angel babies are Athanasios, Barbara, and Cecilia. So far we have icons for Athanasios and Barbara, but have yet to find one for Cecilia. On their Name Days, we light a candle and say a prayer for their souls and ours. So we thought it appropriate that on this community-wide day of remembrance, we light three candles and say prayers for all affected by pregnancy or infant loss. (If you look closely at the photo, you'll see the icons of Saints Athanasios and Barbara on the left.)

Our wave of light.

So how do I feel about these losses? I still struggle on occasion to understand why. I struggle with dreams of who my babies may have become. But then I remind myself that the why doesn't matter, and that my babies are with God. This allows me to see His light in every baby--to see just how precious each one is. I can see Him shining through in their little faces, and feel connected to all my babies, past, present, and future.

Five Snowflakes

The thing about IVF is that it's relatively unpredictable. Most people who haven't been through it don't realize the combination of steps and gambles, twists and turns, along the way. We just had one of these happen to us. Fortunately, it may be a blessing in disguise.

First of all, I've mentioned before that I was overstimmed during my first IVF, which was likely the cause of my low egg maturity rate, and that my stim dosages were decreased this time, in an attempt to avoid overstimulation. Well, it seems to have worked! IVF #1: 21 sizeable follicles, 19 eggs retrieved, 8 mature, 5 embryos after fertilization with ICSI. IVF #2: 9 sizeable follicles, 11 eggs retrieved, 7 mature, 5 embryos after fertilization with ICSI. So you can see that the success rate at each step has been higher.

Today was the third day after egg retrieval (which by the way, was curiously more painful this time). We learned from the Embryologist that all 5 embryos are still growing, although one is slacking. A healthy embryo should be 6 or more cells by this point. Today we had a 9-cell, two 8-cells, a 7-cell, and a 5-cell. If my memory is correct, with IVF #1, we had an 8 cell, three 6-cells and a 5-cell. So the theme of higher success rates at each step of IVF #2 is continuing!

This IVF cycle has been more complicated because we want to do preimplantation genetic screening (PGS) at the day 5 stage, instead of day 3 like last time. In IVF #1, we had a single-cell biopsy done of our embryos at day 3, to test them for a severe chromosomal abnormality, and hopefully prevent another miscarriage. The results came back on day 5, and we had one competent embryo. Two tested as incompetent, and two were inconclusive. Unfortunately, the two that were inconclusive had already ceased growing on their own, or we would have given them a try.

A day 5 biopsy collects more than one cell for testing, and it takes longer to get the results. But it's also more accurate. However, it does require freezing. So our first plan for IVF #2 was to do a freeze-all cycle. But then, considering that we could easily end up with only 1 or 2 embryos to test at day 5, and that the 5-day growth process culls some of the genetically incompetent embryos anyway, we decided to have a back-up plan of preparing for an embryo transfer. In the case that we ended up with only 1 or 2 embryos at day 5, doing PGS seemed pretty pointless. But the result has been that I have had to prepare for both circumstances - a freeze-all, and a day 5 transfer. Having to explain this over and over again to confused nurses was no picnic.

Today, when the Embryologist called with our day 3 results, I was so relieved when she said we still have all five. If we had already been down to 1 or 2 poor-grade embryos, we would have gone in for a transfer today, and I am still in pain from my egg retrieval on Thursday, so I really don't feel ready to get pregnant. I was already getting worried about the very realistic possibility I would need to do a transfer on Tuesday, wondering if I would still be in pain. But, she also had some surprising news.

The Embryologist told me that they always grow a batch of mouse embryos to test the culture medium and lab environment, and that all her mouse embryos had just died. She needed to pull all embryos out of culture. In other words, they all had to be either transferred or frozen. So we froze all five of our embryos. The more accurate term would be "cryogenically preserved", but "froze" is easier to type.

Of course, the idea of something being seriously wrong in my embabies' first nursery concerns me, but I couldn't be happier with the Embryologist's response time, and her focus on saving them. The amazing part is this feels like a blessing. My body does not feel ready to become pregnant right now. This will give me a few weeks to feel completely healthy again.

So when will we get PUPO (pregnant until proven otherwise-describing my state after an embryo is transferred)? Probably anywhere from late September to late October. Vague enough for you? I'll write more about what that part will entail in a later post. For now, we have five snowflake babies resting peacefully. Please pray for them and for us!

As always, please feel free to ask any questions. This often seems like science-fiction to me, but at this point I've probably become so familiar with it, I brush over some points that need explained. No question is too simple.

Thankful Thursday: Spa Professionals

It has been awhile since I've done a Thankful Thursday post, but as I was getting a massage earlier this week, it occurred to me that I don't know what I'd do without my spa professionals!

I'm thankful for my aestheticians - the ones that regularly wax my eyebrows, and the one that gave me my first ever facial this week! It was just a mini-facial, but it made me feel great. Thank God for the aestheticians that allow me to focus on me, and make me feel beautiful in the process.

Most of all, I'm thankful for massage therapists! They work magic with their hands and arms, kneading the stress out of my shoulders and back, soothing tired, aching arms and legs, and finding tension points I didn't know existed in my hands and feet. I have had some massage therapists that were absolutely heaven-sent. I'm thankful that these skilled people found their way to this profession, where they spend their time and energy helping the rest of us simply feel better.

Friday Freakout: Bad Clinic Behavior

I don’t understand why IVF clinics aren’t more sensitive to what their patients are going through. I don’t understand why they aren’t more careful to ensure they don’t stress us out more than we already are, and why they don’t make the effort to provide us with more information and greater transparency, so that we can have some sense of trust and control in a situation where we are vulnerable and powerless.

Photo by takomabibelot

The Wacky Wicketeer and I have been patients at three clinics in Northern California. Here are some of the stressful mistakes we have encountered:
·        Failed to diagnose me properly
·        Failed to inform us of miscarriage risks to IUI due to our diagnosis
·        Miscalculated dates on IUI protocol calendar
·        Made us wait over an hour in the waiting room, making our appointment over an hour late (multiple occasions, and multiple clinics)
·        Miscalculated prescription quantity
·        Mishandled post-miscarriage fetal tissue
·        Improperly tested post-miscarriage fetal tissue
·        Lied about limitations of genetic testing of post-miscarriage fetal tissue
·        Failed to return phone calls (multiple occasions, and multiple clinics)
·        Failed to respond to emails (multiple occasions, and multiple clinics)
·        Talked to me like I was an idiot for asking about the safety of progesterone suppositories during pregnancy, after I had already miscarried once while on them
·        Delayed submitting my prescriptions to the specialty mail-order pharmacy until the last minute (I only received them 18 hours before I had to use them because I spent two days on the phone yelling and pleading with people)
·        Failed to timely submit an insurance claim
·        Minimized & failed to warn me about potential recovery time after egg retrieval
·        Delayed my cycle start date by a week for a non-medical reason after we had already rescheduled work, work travel, and numerous other activities
·        Tried to delay my cycle start date by a week for a non-medical reason a SECOND TIME, after we had already re-rescheduled everything around the first change
·        Delayed giving me dates for an injection class until a week before, such that I couldn’t go because I already had bought plane tickets, conference passes, and made reservations for an out-of-town conference
·        Failed to give me a pre-emptive pain med prescription for the most painful experience of my life
·        Failed to provide thorough information on costs and insurance coverage for IVF
·        Failed to provide an information packet of any sort on how that clinic does IVF
·        Lack of transparency as to staffing changes that may be occurring during a cycle

I have received apologies--from a newly-hired nurse for rescheduling, and from a doctor for my painful experience. I still see that nurse and doctor. Nothing else on this list has been corrected or apologized for. For a service that we gamble tens of thousands of dollars on, and that requires us to substantially rearrange our lives for a painful, mere attempt, at having children, the very beneficiaries of our struggle, the fertility clinics, should be more conscientious of how their mistakes and behavior affect us.

The larger, immediate problem when these sorts of mistakes occur is that it strikes at the heart of an in-progress IVF cycle (or other treatment). It makes us doubt the very people that are supposed to be important members of our team. For me, the single thing that most influences my anxiety level during an IVF cycle is my faith and trust in my fertility team. That includes my clinic staff, nurses, embryologists, doctors, phlebotomists, pharmacists and geneticists, as well as my husband. While other people can be supportive and helpful during an IVF cycle, if they aren’t, I can block them out while in-cycle. I can’t block out this group. I need them, and I need them to be reliable and trustworthy.

I know we’re not the only ones, so what clinic mistakes and issues have added to your infertility stress?

Wordless Wednesday: Tired, So Tired

Can't you see I'm napping?