Sunday, July 28, 2013

An Excellent Book Unhinges Me

I finished a book today. It is my 13th book of summer, and I was really, really enjoying it. However, this particular book had a very peculiar effect on me.

It's Swamplandia! by Karen Russell. A Pulitzer Prize finalist. A breathtakingly beautifully told story of a family of alligator-wrestlers who run the sort-of theme park "Swamplandia!" on an island in the Everglades who fall spectacularly apart when their mother, the glue that held them all together, dies tragically (I'm not giving anything away, this happens in Chapter One, or at least in the portion you'd get as a Kindle sample, and may even be on the back cover copy). Everything goes wrong and all three siblings go in their own directions for themselves or for family. It is not neat and tidy. It is very convincingly told in part by a 13 year old narrator, Ava, who you feel very nervous for. There is some magic to it, but a lot of realism, and the magic starts melting into a very unsavory reality in the last third of the book particularly.

Without giving too much away, because I did think the book was excellent and I don't want to ruin it for those who want to read it and haven't yet, this book had a wallop of an impact on me. It doesn't have an infertility subplot, even though the tragic death is from ovarian cancer. It had ABSOLUTELY NOTHING TO DO WITH INFERTILITY. But I cried when I finished this book like someone very close to me had died. I sobbed until I felt nauseous. It probably didn't help that I had a wonderful, wonderful visit with my best friend this weekend, after two years of not seeing her face. And seeing her face for 24 hours (minus sleeping time) was absolutely fabulous, but when she left I felt so sad. In part because it was such a sweet but short visit, and in part because while I really want to see her soon again I HAVE NO IDEA HOW TO MAKE THAT HAPPEN. At least not in a fair way, anyway. I want to say that I will come down a weekend in the fall, but at some point this fall we are doing our FET and I won't want to travel with needles. Traveling with needles is not something that I ever enjoy doing (who would?) and I avoid it like the plague. Also, assuming (because I have to) that we are GOING TO BE SUCCESSFUL with this next frozen cycle, I am pretty sure my first trimester I am not going to want to travel. Again with the needles. Even though her husband's a doctor and could give me my butt shot, I'm not sure I want my college friend (the husband) giving me a shot in the butt. Plus I'd be far from my clinic, which makes me nervous. So that kind of stinks. Then, when she said, "We have to see each other at least within a year!" I opened my big stupid mouth and said, "Well, duh, you have to come to my baby shower" and immediately started crying. In part because it is so hard for me to believe that that is actually possible in the near future, and in part because I couldn't believe I said that so cavalierly. I am afraid of jinxing, which is ridiculous and childish but it's there. If you say it out loud it can be taken from you. (I am also afraid of Candyman, so there goes all my credibility.) So, it was in this post-farewell-already-sad-and-even-bereft state that I read the last 1/4 of Swamplandia!.

There was just so much loss. Things gained, but I took such an incredible sense of loss in so many ways away from this book. Beautiful loss that is presented in the kind of writing that can make you sob for twenty minutes until you nearly puke. It was just so unexpected. I mean, not the loss, as there is an undercurrent of it from the getgo that ebbs and flows throughout the book. But the level of loss that I felt and the sadness that I felt in Ava's experiences was almost primal. It opened some floodgate that somehow hadn't been released yet since our recent failure.

I am dying to talk about this book with someone who has read it, because I'm wondering if certain events affected others the way they did me or if I am just seeing everything through the lens of loss, my loss and cumulative losses, and that's why I felt so devastated. My eyes are still puffy from the crying and it is nearly five hours later. I just can't bring myself to spoil it for everyone else. This is what infertility has done to me--I feel as though I am incapable of experiencing anything without having it run through me and touch those parts that have been forever changed by my complete and utter failure to procreate. Yes, I know that sounds harsh, but it's how it feels right now--like a consuming failure. Every negative compounds the losses of when I actually was pregnant and then lost it, because it alters my ability to trust that that is even possible again. Will I get to wear my belly bands again, on my actual unbuttoned jeans  and not as a makeshift modesty thingie under an apparently see-through top? (Works great, by the way, if you are looking to repurpose early maternity undergarments. Makes a decent tube top/smoother for under sheerer tops.) Or were those it, my only brushes with pregnancy, brief moments in time forever filed in the past? Every negative is not just a disappointment. It is a downright LOSS.

Interestingly enough, this post has been bubbling up in me all day, and I have been thinking about how I am not capable of a day without thinking/speaking/breathing infertility. At the same time, another bloggy friend wrote a post about this same phenomenon that I loved, Addicted to Infertility? / Jody the Chimpanzee. It is so comforting to know that you are not alone in these thoughts. It is also true that heading into a cycle, I am capable of a much brighter, more positive, hopeful outlook. I feel like there's more ups and downs following this latest failure. I was a mess, but then I made my plan with my doctor (a plan of attack always makes me feel more hopeful), but then I am easily a mess again. Maybe I will be a little less messy once I have a protocol sheet in my hands and a sharps container back on my kitchen counter. Or maybe I have been forever altered by this experience and I will always have these ups and downs and intense feelings of loss that can be so easily triggered by an astonishing novel where I FELT those characters so deeply. Maybe, in truth, this is just a really good review for Karen Russell, cloaked in a lot of my personal experiences with loss.

I think I need something funny next. Any suggestions are greatly appreciated, as I just don't think I can handle another novel that has this kind of effect on me. And if you haven't read Swamplandia!, go do it. Unless you're in a messy place. Then just beware that it is a floodgate key, but totally worth it.

Wednesday, July 24, 2013

Preparation Survey: What Do You Do When Eggs Aren't Involved?

Okay, ladies, I have another interactive post for you. I am looking for information and it isn't necessarily limited to donor egg IVF, since if you've ever done a FET it's like having the lasagna in the freezer--you just pop it into the oven because all the making of the ingredients is already done. I had a plan all down for what to do to prepare for egg quality--the wheatgrass juice, no alcohol, no coffee, lots of low-mercury fish and organic vegetables and fruits and whole grains (devoid of gluten) and fish oil and CoQ10 and antioxidants and all that fun stuff.

My question is, how do you prepare your uterus to receive? Do you cut all that stuff out when the eggs aren't in the equation? How far in advance? I don't do CoQ10 for FETs or donor because I'm not creating anything, but I do take fish oil religiously and I cut out the coffee and the alcohol, at the very least by the time I start Lupron. I'm not a fifth of gin kind of person but we enjoy our wine with dinner and we enjoy it rather frequently. I cut those things out in a "for the sake of general health" thing (and because drinking on Lupron and Estrogen is not a good idea), and also because somewhere I saw something that claimed that there's a compound in the coffee bean that can inhibit implantation. Which is kind of crazy sounding, but whatever. Plus there's the pineapple core thing. At first I heard all this stuff about how the bromates (bromides? unclear) in the pineapple core could aid in implantation, and so I ate pineapple core like mad throughout the 2 week wait starting with transfer day. But then another study came out saying that it could actually impair implantation. I FEEL LIKE I CAN'T TRUST ANYTHING! I feel like there is a study somewhere that says that if you eat a salad of edible flowers out of a bowl made out of a turtle shell while listening to whale song played backwards, implantation is more likely to occur.

Really, what I'm looking for is: What do you do to improve the chances of implantation for a transfer where you're not making anything but a plush lining? Do you do anything? Does eating full fat dairy matter a whit when you're not in the business of egg production?

I am heading into my next FET a little sooner than I had anticipated, which is great, but now I have kind of a limited time to do my prep. I am working out a lot (that is a fairly loose term where I'm concerned) and feel like I have done a good job just getting healthier and more muscle tone. I really hope that muscle weighs more than fat because I am actually up a few pounds, even though my clothes are looser. I'm walking several miles (anywhere from 2 1/2 to 7) several times per week and doing yoga/pilates tapes, some involving light weights or fusion dance, and my legs and waistline are seeing a visible difference. But, I am starting Lupron in less than a month and so it's tricky... Lupron sucks all my motivation away. And makes me feel icky if I exercise too hard. Anyone else experience this on the Lupron? And forget it once I start the estrogen and then especially the PIO. That stuff packs on the poundage like nobody's business, and at that point you're supposed to curtail your exercise activity. (How they can say reducing your BMI if you're overweight improves your chances at the same time as reduced exercise and full-fat dairy is beyond me.) I feel like I'm basically getting myself in good shape so that I can once again slide into fertility-drug-atrophy.

I would greatly appreciate any and all thoughts on what you have done, what you have thought helpful, etc. when preparing for either a FET or a DE IVF cycle. Getting that oven's pilot light lit, so to say. Preheating for that lasagna.

Sunday, July 21, 2013

Family Reunion Opt-Out

This weekend, my mom's side of the family had a mini-reunion. Not the giant-tent-in-a-park, 100 people and you can't remember who half of them are since they are 3rd cousins twice removed type thing, but "let's get together in the Adirondacks for a weekend and connect." We didn't go.

Because of Facebook, photos of the reunion activities were everywhere. Lots of smiling faces. Lots of fishing and lake swimming and large tables in the resort restaurant full of my aunts, uncles, cousins, and their children. It was kind of like being there in a weird a "silent person in the corner observing everything but not partaking" kind of way. A creeper kind of way.

Here's the thing. Planning for this reunion event started sometime in the early spring. Thanks to infertility, I cannot plan ANYTHING in advance. At that point in the game, I had no idea whether I would have already done my transfer, would be in the middle of the DE IVF cycle, would be newly pregnant, would be newly facing hideous failure (check), or would have recently miscarried (I hope never to have that experience again). I try not to be a worst-case scenario person and fail miserably. Actually, I don't think I even try anymore because it kind of seems like "worst case scenario" has become just, "scenario." I simply cannot plan for anything that far in the future because, thanks to our ongoing "situation," I have no idea where we will be, what our financial situation will be, what our emotional or physical situation will be, etc. etc. etc. We tried to be spontaneous this year and booked our (used-to-be) annual trip to the Bar Harbor area, where Bryce's family friend has a camp. We were so proud of ourselves, throwing caution to the wind and booking something FUN in ADVANCE. Of course, we caveat-ed ourselves to death when booking, explaining we may need to cancel and hopefully we wouldn't inconvenience anyone by doing so. And sure enough, our retrieval/transfer timing was such that it fell EXACTLY IN THAT WEEK. Buh-bye, Maine vacation. As part of our plan for this monumental new pathway down Donor Egg Drive, we planned for a frozen cycle. We didn't want to have to drop more money right after the most expensive attempt we've had yet, but we were ready to do it. So somehow going away for a weekend was not something that we could also plan for.

I will be brutally honest, though. Logistics and financials are only a little part of it. Sure, I was hoping to be only a few weeks into a prized pregnancy and totally not willing to go to the middle of nowhere when that budding life inside me was so fresh and new and tenuous. That was my initial thought process. But when our failure became apparent weeks before the reunion weekend, I just could not bring myself to go for another reason.

I am the oldest of all my cousins (both sides). On my mom's side, of those who are married or committed and family-minded, I AM THE LAST TO HAVE A FAMILY (actually, ditto that on my dad's side, too). My sister is a wonderful stepmother to two boys. There are young children and babies and brewing babies. And I am a complete failure at this particular activity. It is incredibly hard for me to go to family events where everyone else is a parent. It highlights (to me) how apart Bryce and I are in that regard. I love my family and I am happy that there is an abundance of expansion and grandchildren and children and new nuclear families forming all over the place. I would love to spend time with my family. But right after failing another attempt, one that was supposed to be the answer to our woes and is pretty much the Final Frontier in our hopes for experiencing pregnancy and birth and genetic input of various kinds, that was just not the time to be around all this expansion.

Last year we had another reunion of sorts, for my grandmother's 94th birthday. It was late summer. My cousin's adorable little boys ran around and climbed rocks and played musical instruments and were a joy to be around. Another cousin and his wife announced their pregnancy. They were very, very newly pregnant and the excitement was palpable. There were many discussions around possible names and family legacies and who looks like who and how my other cousin's son had my grandfather's hairline...all pretty normal conversations for people in this stage of their lives. But it was completely and totally excruciating for me and for Bryce. Because I was the same number of weeks pregnant just weeks before, and instead of discussing my joy with everyone I was mourning the inexplicable and sudden loss of this pregnancy. I also got to tell my grandmother that I was pregnant, unfortunately because I began miscarrying while visiting her in her apartment and had no choice as I sobbed and ran out to try to catch a doctor at my clinic just a mile or so away. I was having a slightly different experience. I was also mourning the fact that we had just decided that yes, we would pursue donor eggs. So there would be no conversations in my future about whether or not my child had Popie's hairline or Grandma's eyes. I didn't know much about epigenetics then, but I was feeling like the chances of passing on these particular hereditary traits were pretty null and void. So, in the interest of not bringing everybody down, I didn't say anything. I excused myself from conversations when I could not keep the smile plastered on my face without looking psychotic, and we left earlier than anyone else so that I could cry my way home. But I managed to not outwardly be the sad sap that I most certainly was on the inside. I didn't want to take away from other people's joy or make people uncomfortable. I think maybe excruciating is too mild a term for my internal feelings in that situation.

Fast forward to this family get-together, where I have recently failed my celebrated DE IVF attempt.  Even though I have very hopeful plans for the next go-round and changes to meds and surgical intervention and yada yada yada, I knew that it would be a complete disaster to go to this family event at this particular timing in our process. I am pretty much incapable of the plastered smile. I am by turns furious and angry (I'm so sorry, Bryce, because other than the cats you are the only animate object around to witness my fury and utter exasperation), teary and utterly devastated, hopeful nearly to the point of a manic state. This is all so fresh. I am not ok. In fact, I burst into tears yesterday because I was trolling Facebook and a person posted up a meme that took my breath away. It was supposed to be for those enduring cancer either themselves or supporting a family member with cancer. But I thought that it was particularly relevant and helpful for people enduring infertility or supporting a family member/friend with infertility, too. It said:
                                  when I say "I'm okay,"
                                  I want someone
                                  to look me in the eyes,
                                  hug me tight,
                                  and say,
                                        "I know
                                          You are not"
I wish I knew who to credit that to. I could hug them for putting into words what I feel sometimes (many times). Is it sad? Yes. Does it make people uncomfortable? Yes. Do I want someone, sometimes, to just inherently "get it" without me making awkward and often unreasonably pissy explanations for myself? Yup. By writing this, I am getting all this off my chest. I am not making an apology for myself--I am not sorry that I chose to opt out of the family reunion event. I could not do it, for multiple reasons, all of which are valid. I have to take care of myself and nurture my relationship with my husband right now, because we are HURTING. We are tired of facing disappointment after disappointment, loss after loss, and always freaking having to find a silver lining. We are tired of smiling through our pain. We literally went to a restaurant recently and while waiting a family was there who were of the "Let 'em run wild and free" philosophy, and very young children were very noisily in our face and personal space. We actually asked to be seated away from this family, feeling very high-maintenance and fuddy-duddy about it, but with the vague explanation by Bryce that "My wife is having a very difficult time right now." I would have been fine with being more specific, but it worked. We are not child-haters. But, quite frankly, having the joyful noise of small children in our face while we were away for the day trying to have a GOOD experience the week of our negative test results would have been disastrous. I will cry in a public place. I will be unable to concentrate on dinnertime conversation. We are bitter and angry that that beautiful, messy, complicated life is not ours. We are jealous. And, in the freshness of this newest slash to our body of hope, the coping mechanisms just ain't what they used to be. So we hermitize. We avoid situations where we will smile through our tears. It's part of what we have to do to survive.
However, although I won't apologize for it, I do feel a level of guilt. Those hikes on Whiteface and dinners with fun people and jetski antics on Lake Champlain looked fabulous. Everyone is smiling and having a great time.  I wish it was another time, and we were in a different place, because I would have loved to have been there, smiling in all the pictures with everybody else. It would (in theory) have been a great little escape, a mini-vacation. Except I know my mental state and my emotional needs, and we would not have had a good time, not really. We would have tried, but the specter of "will this ever be our life???" would have ruined it all. I would have held a small child as I did last summer and fight back tears of "am I ever going to hold a child of my own?" I would have seen all the grandchildren and felt the loss of not providing any myself. We would have listened to anecdotes about kids small and large and felt horribly, terribly left out. But, in the interest of not being a couple of downers, we would have tried so hard to not let on just how miserable we were on the inside. Which is so unfair to us. And, actually, I may have hit a point where I might have made bitter comments on the outside, which doesn't make for a good time, either. I can't "get over it." I can't "just have a good time and get away from it all." It's here. It's ingrained in me. I can't pretend to be infertile for the sake of a good time. Trust me, I've tried.
Maybe next year there will be another opportunity to join in the fun. Maybe I will have my carrier, my sling, my Hooter Hider, and we will join the club of parents, new and not-so-new. Maybe we will be able to have anecdotes of our own. Maybe we will be able to have a good time, inside and out, without feeling so horribly lonely and deficient and out of place in these extended family situations.  I really, really, really hope so.

Wednesday, July 17, 2013

Putting Together a New Plan

I am a planner. I am a teacher, and a special education teacher at that, so I have to walk this fine line between planning (so super important) and flexibility (things don't always go the way you think they will, and sudden death in the classroom is rigidly hanging on to a lesson that doesn't work just because you think it should). There's a big section on "flexibility and responsiveness" on our APPR (performance review) paperwork, and I always speak to it because especially as a special educator, that's the name of the game--adjusting to the needs of your students despite your best laid plans. Several times this year I have thought about how I need to apply (and have) those same attributes to infertility.

After failing my first DE IVF in late June, I went through a variety of emotions. I was shocked at first, then unbearably sad, then angry that this didn't work. Then I put a plan into action. I'm not sure what the stages of grief are exactly, but I sure as hell know that I reject "acceptance" on the list--I don't accept treatment failure, I analyze and look for weaknesses and formulate a new plan that makes failure not an option for next time. I feel hopeless at first, and then have this ridiculous surge of optimism that goes (maybe) a little too far in the other direction because I refuse to be beaten by infertility. I am not ready to be flexible in that regard. I became a machine, gathering information and trying to figure out what I could bring to my consultation that might change SOMETHING, ANYTHING about my plan so that I can hope for success in my FET (Frozen Embryo Transfer).

My consultation with my doctor is today. I have waited two and a half weeks for this appointment. I have been ruminating and plotting and researching all this time. Right after my lovely "you can go off your medications" call, I decided that I was going to advocate for going on the Pill right away, so that I wouldn't lose time and I could do the FET in August if possible. But then, I started worrying. I went back into my notebooks, and saw that it's about 31 days from the start of Lupron to transfer in a FET. My time was dwindling, and what if the lab was closed for a week in August for cleaning? What if when things lined up there were no FETs scheduled? I am not a master of how the lab schedule works, so I decided to email my doctor and see if it was even possible to have a FET in August. Better to know that ahead of time than to spend weeks plotting for it and hoping for it and have more disappointment in the consult. I like my disappointment up front, thankyouverymuch. In addition, I had done some researching on other people's DE IVF protocols. Several other ladies from other states had cycled around the same time as me, and they are (fabulously) pregnant and I am...not. What gives? I wanted to see if there were any glaring things on their protocols that weren't on mine. So that I could present these options to my clinic with some actual evidence, and since these clinics are in different states, I thought a consistency in their protocols would be particularly interesting (and validated) for something to try that had been researched elsewhere and was a common thread across clinics, across states. I was prepared. If you're interested in this protocol discussion, the link to that blog is here.

I love my doctor. I feel like it is the mark of an excellent doctor and clinic when they truly listen to their patients and consider information brought to them even if it's not "how we typically do things." I'm sure that my clinic has gads of research that goes into each of their protocols. I'm sure that their success rates attest to the awesomeness of the protocol. I am just saying that I APPEAR TO BE AN OUTLIER. I need something different. And I don't want to GO somewhere different, I want to bring the difference to the people who have been there for us throughout this whole journey, tweaking and adjusting and improving our odds slightly each time. And I was thrilled that my doctor was open to looking at these changes. Thank you so much, ladies who responded to my call for protocol info! I hope that you will be a part of the changes that will get me over to the pregnancy side of things.

My doctor surprised me, though. He said over the phone that it might not be best to do the FET in August, that we should consider doing a hysteroscopy instead, followed by a FET in September. At first my heart dropped. I NEED TO HAVE ANOTHER ATTEMPT ASAP. The thought of going back to school without another attempt under my belt, without the POSSIBILITY of being pregnant, made me nauseous. Especially since I was out for three days in the last week of school and a number of people knew why. When you work with a lot of teachers, it is nearly impossible to keep totally private your infertility treatments when they require absences at funny times of the year. Luckily (in a way) I have been back at school for what already seems like inordinate amounts of time and will continue this trend through August. So I should run into a lot of these people before September. But regardless, I wanted the chance to still be pregnant, although not publicly, when I came back.

But then I realized, he was saying that doing this, by delaying my FET with the hysteroscopy, he could possibly give us a better chance. That because we've put 18 (holy jeezum EIGHTEEN) embryos into my uterus, and two did something (but not sustainably) and the rest took a trip to Lake Ontario without stopping to say hi, that we just want to make sure that my uterus is free and clear. AGAIN. Especially since these last embryos were beautiful quality and from another source with a clear record of implantation success. I have had just about every test you can have on your uterus. I have had THREE HSGs (forced dye through a balloon in your cervix to fill your uterus and spill out your tubes or tube in my case, this looks for open tubes and uterine shadows that could represent polyps/fibroids hanging out in there), two Saline SonohistoGrams (similar idea, but saline pushed through and the visuals are provided by ultrasound, not scary giant X-Ray machine like HSG), and a hysteroscopy in January 2012. All of which produced normal results. Well, the pathology report from the hysteroscopy showed a miniscule polyp that wasn't visible but the tissue was there in the detritus from the gentle D&C. I also had eyes on the OUTSIDE of my uterus when I had the laparoscopy to remove my ectopic pregnancy and right tube and clean up a little endometriosis (because I would like as many diagnoses as possible, please). It looked lovely--pink, round, healthy. So why do we have to be poking around my uterus again? Don't we know that it's not the culprit? Can't I continue to say to people who think gestational carrier is the answer to everything (thank you, Hollywood) that it's my eggs that are the problem, not my uterus? That my uterus is just fine, thankyouforasking?

Well, no. Which sucked. I do not want there to be something else wrong. I felt a little testy that we were once again going after my anatomy, and that I could be multiple causes of our inability to have bouncing babies crawling all over my own Facebook feed. BUT, they don't necessarily expect to find anything. BUT, it's worth a look just in case there is a Phantom Polyp or Faceless Fibroid that lurked shadowless in both my HSG and SSG this past year, and that's why implantation didn't happen. (No one seems to be clinging, like me, to the thought that DE IVF doesn't have a 100% success rate and maybe I just was unlucky and/or need a tweak to my protocol, not my anatomy.) The good news is, if there's something, then they fix it and we have some kind of answer. And even if there IS nothing, they will do a gentle D&C and freshen up my carpeting in there, making me apparently more receptive to implantation when we do our FET in September. We missed out on this in January, because we did the hysteroscopy and gentle D&C but then didn't do our next fresh cycle until April. Doing the cycle the month after apparently comes with benefits, according to some sources. So, I am letting go of my August FET. I am scheduling this hysteroscopy today in our consult, sometime in August. What's summer without a little outpatient surgery? Last time it was at an ambulatory surgical center, which was absolutely lovely. As lovely as a place can be that sticks IVs in you and intubates your throat, but whatever. I would like to NOT go to the hospital, as the last time I was there was the ectopic debacle and I struggle with returning. I don't even want to deliver in that hospital. The people were great but the circumstances traumatic. This surgery is super un-traumatic. No incisions, they just dilate the crap out of your cervix (thankfully while you are under) and then poke around with a scope, taking cool pictures that I hope I get a copy of. I just can't have enough portraits of my lady parts. Then they do the mild scraping of the lining to redecorate my baby home. And then I recover, and plot for the FET.

I will share the protocol changes after my consult today--I am interested in what my doctor will say about all the information we are bringing. I plan on talking about Medrol, progesterone monitoring/additional support, HCG, SET, and autoimmune response. Oh, and one of my friends mentioned something about getting stung by a bee, which I won't be doing but am dying to know if there is any medical backing to this idea that bee venom will reverse your immune system's response to the presence of embryos. Because that sounds batshit crazy to me, but then again I'm repeating a surgery in hopes it will help get me pregnant with embryos based on eggs that aren't mine and I burn red candles throughout my cycles in hopes of good juju, so I guess I can't really judge on the crazy.

New plan, new protocol, new cycle. Let's hope new results. I would love to be researching morning sickness cures instead of the pros and cons of single embryo transfer or adding a steroid into your protocol. I would love to be looking up labor and delivery tips instead of yet again preparing to have my cervix messed with so that a veritable periscope can be whirled around in there. One of my friends asked if all this dilating will make labor and delivery easier for me, since my cervix has already been manipulated lots. That is a lovely thought but I doubt it--although it would be just fantastic if all this poking and prodding meant that SOMETHING down the line, something that's usually harder for "normal" people, would be easier for me when everything else has been just so HARD. I think that might be a lot to hope for. But, hope is the name of the game. I go in for another surgical procedure in the name of hope. I do a FET at the start of the school year (vomit in my mouth) in the name of hope. Hope's all I've got, people. Hope and perseverance to keep at this until I can join the ranks of the other people who fought and lost and regrouped but ultimately won the battle for the baby.

Saturday, July 13, 2013

Cleaning Up

One of the things Bryce likes best when I am home for the summer is that I get to all the cleaning/organizing projects that have been lurking all year. Ok, maybe not ALL of them. But I try to make a dent in things and show how nice and useful it is to have me home for the summer months (in addition to yummy dinners, a more frequently cleaned house, fresh laundry minus the unfolded clean clothes that sit in the basket for days during the school year, and the special treat of not having to cook OR do dishes on days when work was really long and exhausting).

So a few days ago I decided to tackle The Drawer.

The Drawer is a faux-leather box, one of three, that go in the bottom of the coffee table. The other two hold magazines or binder projects for razored magazines. This capitalized one holds all our fertility miscellany. It was sort of organized at one time, but now is a place to shove paid bills, receipts, old protocol sheets, etc. Well, not anymore. Now it truly is organized and a beauty to behold, but the process of cleaning it had an interesting and not entirely unexpected effect on me. I was shocked into tears at how much STUFF we have related to our cycles. I decided to take pictures of the different items in the drawer to document the sheer volume and variety of infertility-related crap that I have been holding on to for just about four years now. (Ouch, it hurts just to say that).

Hot mess wristbands.
The crazy in me sorted them by age. They are in descending
order from 33 at the top to 37 at the bottom. I need help.

This was the sight that greeted me at the bottom of the drawer once I'd taken everything else out. Years and years of hospital wristbands from years and years of treatment. There are IUIs in there, and egg retrievals, and embryo transfers, one pericentesis from a lovely case of OHSS, one laparoscopy at the bona fide hospital that required an overnight stay, one hysteroscopy at the ambulatory surgery center that didn't, and maybe a couple HSGs for good measure. Fact is, it's way too many wristbands to also not include at least one for the delivery of a freaking baby. Why do I save these? I honestly don't know. I found one that was labeled with a sharpie, "First Egg Retrieval." Isn't that cute. I think I wanted to keep them as a baby book memento, and then it just became a way to chronicle this trip through hell in little plastic bracelets. I'm sure I'm missing a few. I just can't bring myself to get rid of them until I have the magical ones that bring us to the end of this journey. When I showed a friend the picture the day I cleaned, he said, "Why not just keep the winning one? It's like scratch-off tickets, you don't keep the losers." But in a weird way, each of these tickets represents embryos and tries gone by, and I can't let them go yet.

Hilarious Accordion File

I don't know why I can't fix
the orientation of my photos.
Isn't this adorable? It's a flower-and-butterfly accordion file that I bought myself in 2009 to keep myself organized throughout our infertility process. A fabulous idea, and I fully support trying to keep the ridiculously vast amounts of paperwork organized that you will inevitably collect during infertility treatment. This file makes me laugh though, because I thought I could fit it all inside. And now I need that (which pretty much covers the 7 IUIs and assorted testing), plus four file folders, plus four notebooks... I was so optimistic that our journey would be swift and fruitful. Oh, innocent 2009 Jessica. You can't say I haven't been hopeful from the outset.

Rubber Banded Stack of Assorted Cards

Over the course of our journey, we have received a lot of cards and well wishes. I have received things in the mail from people I have known all my life and from people who I haven't seen in years but have connected with on facebook. Cards, gift certificates, flowers, owl paraphernalia, elephants, `tokens of hope--you name it. I am incredibly blessed for the support that we have received. Unfortunately, the bulk of these cards come from when I was recovering from my ectopic pregnancy surgery. That was a really, really rough time. There are a few cards in there of excitement from our parents, who were thrilled that we were actually pregnant, but that arrived a day or two before it all came crashing to an end in the OR. Those are hard but important to hang on to. We have some letters of encouragement or responses to blogs I've written where I felt lonely and people felt the need to reach out and make me less so. I so appreciate all of these, and so can't get rid of them. Even the hard ones. Especially the hard ones. I don't always reread them, because that would cause a major flow of tears, but I love having them close by, a reminder of how loved and supported we are in this crapfest of a struggle to get pregnant.

Appointment Notebooks
At the beginning of the journey, I bought myself the bigger of these two notebooks. It has three sections. The inside cover says, "The Family-Planning Fertility Notebook." It starts with a timeline of how we will get started (in August 2009, two months before we got married because hey, at 33 who
Gagh! Upside down! The bigger one has the sections. Note
the botanical "fertility" theme continues...
has time to waste when you know there's infertility in the mix?). That is followed by a now highly entertaining "preferred line of treatment" that puts a lot of emphasis on IUI, a T-chart comparing IUI to IVF (like we had a CHOICE in that matter!), and nowhere anywhere does donor egg show up in the mix. The first section of the notebook was dedicated to appointment notes from consultations and medication trainings, ideas on treatments, questions to discuss with doctors at (increasingly numerous) failed cycle consults. The second section is where I went to crazytown, frantically writing down all blood values, follicle sizes, endometrium thicknesses, etc. from each monitoring appointment and then retrievals/transfers. I have charts and graphs that I did to show trends in beginning estrogen levels (dismally deteriorating, I might add), and attrition rates with retrievals. I could tell you what my estrogen levels were for any given cycle. I can tell you when I had the most mature follicles. I can tell you when I had the most mature eggs. And all in my handwriting, not the embryologist's. This was very helpful at first and then became an obsession. The third section was the Section Of Hope. This was where we recorded names we liked, parenting ideas, nursery ideas, bedding SKU numbers (ha! like any of THAT is still in stock or not discontinued...), etc. We were super active in that section at first, but then it has the most blank pages of the three sections. I wanted to keep the fun and the hope alive, but as the other sections filled up, that one became harder to play with. And then I lost the notebook. (Obviously I found it again, but it was lost for some time). It ends with the ectopic, which was our first success and our first horrific loss. When I couldn't find it, I decided maybe I didn't need to look for it. Maybe it had served its purpose and I didn't need to obsessively note everything down. The clincher was when my doctor asked where my notebook was and I said, "I lost it, I can't find it." And he gave me a long look and looked at Bryce and said, "Are you sure Bryce didn't 'lose' it for you?" I knew I had gone to crazytown and needed to pull back a bit from the excessive documentation. But then I bought the other notebook, the smaller one. That has information but not as extensive for the rest of the cycles. Plus some information on adoption. And information on egg donor. And maybe a T-chart or two. It has no sections. I don't always bring it to appointments anymore. That's probably a good thing.

Cycle Journals
I was so ambitious when we went to do our first IVF. I wanted to chronicle EVERYTHING. I am a
Nope, not writing from right to left,
the picture is upside down. Again.
journal-writer to begin with, and didn't start blogging until that first IVF went sour, but I wanted a dedicated journal for IVF only. I would write in it every day starting with Day 1 of the cycle and record my emotions, my physical symptoms/side effects, my hopes and dreams and fears. Every single day from the beginning of the cycle to the end. That little journal (again with the flowers!) actually holds only two cycles--my first two IVF attempts that resulted in no babies and no frozens. Even though the journal is small it was thick, and so each day got at least three pages. I have to say, this was actually really helpful because I could look back at another cycle and see if I was having the same reaction to the Lupron, or see how the estrogen levels differed and affected me in various ways. After I hyperstimulated from the second IVF I could check the symptoms and watch out for possible OHSS in later cycles, which was comforting. I moved on to the orchid journal with our third fresh cycle, first pregnancy and loss through ill-fated ectopic, and then frozen, fresh, frozen with pregnancy and miscarriage, and first donor egg. As you can see the journal is not monumentally bigger. I just couldn't be quite so detailed anymore, and so more cycles fit. The egg donor cycle was the shortest of all -- I think I wrote 5 entries total. But I was still detailed and especially during the wait, hoping that somewhere there would be clues that would help me determine if I was pregnant or not. All I can say is that it really is true that the only thing that will tell you if you are honest to goodness pregnant is the bloodwork. Those symptoms were different every time and sometimes I was convinced I was pregnant and I wasn't, and other times I thought I wasn't and I was (but not for long). The journals were therapeutic, though, and it is nice to have a record of every cycle from a nonmedical standpoint. My hope that it would be an early baby book obviously died a long time ago, but now I am starting a new one, a THIRD one (guess what's on the cover...) and I hope that this will be my last. That I can start it as a DE FET journal and have it morph into a pregnancy journal. Because you know I will be chronicling all of that experience obsessively, too.

Four File Folders of Paperwork
So far I haven't spilled where all my IVF paperwork is, so here it all is--one folder would not hold it all so I repurposed those folders they gave me with my protocols and consents and all that stuff to hold the ridiculous amounts of paperwork that I have. I recycled a whole bunch, too, because how many copies of a fact sheet named "Preparing the Uterus for Transfer" do you need? I have meticulously filed and organized all of our paper into the following system:
Blue: Photos and surgical sheets. (Here are all our pictures of our embryos and transfers, as well as some really neat yet disturbing pictures of my uterus inside and out, thanks to the hysteroscopy and the laparascopic removal of my tubal pregnancy.  Why on earth would I keep pictures of my tube starting to bleed from the bulge of the pregnancy? Because even though it's sad, it's also really cool from a scientific perspective.
Green: All protocol sheets and reports from our four fresh and two frozen IVFs with my genetic material, as well as information/fact sheets on injectable medications and the ins and outs of testing and IVF cycles.
First Red: Medical receipts for this current year, split into FSA receipts and then out-of-pocket bills/receipts. There are a few things sprinkled in there that aren't fertility (eyeglasses, dentist) but it's overwhelmingly fertility related. This will make doing our taxes so much easier, as before everything was just dumped into The Drawer and had to be painstakingly organized and filed between FSA and not at the beginning of the year. I have saved us time!
Second Red: This one is for Donor Egg cycle materials. I have put our special photos of our blasts and our transfer in there, as well as the mock cycle and actual cycle protocols. That's all on the left side. The right side is free and clear, waiting for our FET information and photos and positive pregnancy test. (See? Despite being faced with FOUR FOLDERS FULL of infertility winning the battle, I still have space for the belief that we WILL be successful in our FET. I have to, or I'd be a crumpled mess all the time.)

There you have it! What was once a swampy mess of paperwork and photos and medical expenses is now a highly organized drawer that is not spilling infertility over onto the floor. I feel so proud of my organizational skills and a little more than a little overwhelmed at the extensiveness of the contents of said drawer. It is a little less intimidating and horrifying now that it is neatly put away, in preparation for putting it all away FOR GOOD.

Wednesday, July 10, 2013

Why I Hate Nature Shows

Bryce and I were looking for something to watch last night. We had watched one of the new Arrested Developments (funny, but not quite as funny as the original), then Bryce watched a really cool documentary on the making of Dark Side of the Moon (it actually made me appreciate the musicality of Pink Floyd) while I knit away on my neverending project. It was a rare TV night where we just wanted to veg, so we looked for something else. Enter the nature program that made me infuriated.

"Wings of Life" by Disney Nature. A visually stunning documentary on how animals with wings -- birds, bees, bats, butterflies, etc -- have sustained life on this planet. That's how it was described on Netflix, anyway. I should have paid attention when it said "BIRDS" and "BEES."

The program is narrated by a very familiar female voice that we couldn't place, who is the character "Flower." Not the adorable skunk from a certain deer movie, but literally any flower, ever. In the time we managed to watch this thing, her voice was a bucket orchid in a rainforest, a saguaro cactus flower, and milkweed. The constant personification of flowers was on the annoying side, but the stunning slowed-down visuals made up for it. Mostly. Quickly we realized that this entire show was about reproduction. It was like flower p0rn, with slowly unfurling petals and long proboscises dipping in and out of tubular flowers, and bees being held gently against their will by bucket orchids so that they could be fitted with pollen packets to deposit into another flower. It was Fifty Shades of Flowers. The narrator kept talking about "love messengers" and "using other creatures to create the next generation of flowers."

It was an entire program on how successful the freaking FLOWER has been at reproducing, even though it needs a third party to do it. The BEES and BIRDS and BUTTERFLIES are like little buzzing reproductive endocrinologists, inseminating flowers everywhere. It should have been funny, but it pissed me off. A damn flower is more successful at reproducing than I am. Maybe I need to enlist some butterflies from my garden to help me out, since obviously I am having a hard time with medical pollination.

The worst segment was the saguaro cactus. This was a twofer. This crafty cactus in the Sonoran Desert produces flowers that are filled with nectar and ringed in pollen that bloom for one night only. Apparently bats from an island in the Sea of Cortez come flocking over to dive bomb the flowers. This is no delicate hummingbird dance, they literally fly straight INTO the flowers, chowing down like mad and licking up all that yummy nectar with their long tongues like sloppy, drunk, 2 am pizza eaters. That part was funny and entertaining. Not so funny is that the only bats that fly over are FEMALE, and they are all freaking PREGNANT. So the saguaro cactus reproduces itself by attracting craving-crazed hormonal bats who need the nectar to gather strength for birthing and nursing. AWESOME. I will now always associate giant spiky cacti with fertility. And with being far more fertile than me. Apparently the flowers then turn into fruits, which the mommy bats then come back to scarf up, and in addition to pollinating the crap out of those saguaro flowers they then spread seeds through epic pooping of the fruits all over the desert floor. Somehow they didn't choose to provide that visual in the program.

I guess my point is that I cannot escape fertility ANYWHERE. Here I thought I was going to see really cool footage of flying critters, and I did, but with the heaviest-handed fertility focus ever. I mean, it shouldn't have been a surprise, because really biology is all about sex and reproduction and continuation of species--but the constant use of words like "strategies" and discussion of how clever "we flowers" are in getting it on made me feel even more like a reproductive failure. I would never be successful in the wild. Unless of course I could figure out a way to get orchid bees to deliver fertility packets to me, but I feel like I would be the rare bucket orchid whose packets were defective. Sigh. Maybe I should look at it from the other way... I am part of evolution, too--I am adapting and utilizing third parties to make reproduction possible. I may be unsuccessful as of right now, but do those bucket orchids despair if no bee comes and drops into the secret pollen packet passageway on the first try? It might not be the first time but eventually that right bee will come and that packet will get delivered. I just need the right bee at the right time. I thought I had everything all lined up with this last effort, but apparently that wasn't the right bee. Ugh, stupid nature show, you have both pissed me off and provided me with a way to put a positive spin on my repeated failure to reproduce. Hopefully next time around I can make like a sloppy pregnant saguaro-eating bat.

Thursday, July 4, 2013

How to Stay Sane When Infertility Flips You the Bird

I have been struggling with what post to write next. It hasn't even been a week since we received our bad news on our first ever DE IVF, and so I'm not exactly all sunshine and rainbows. It feels like it has rained nearly nonstop since our bad news, which in a way makes me feel like even the sky is crying over the injustice of it all. This particular cycle had so much going for it. I had so much time to relax and take it easy. I was kind to myself in every possible way. I was coffee free, alcohol free, dutifully downing my prenatal vitamins, baby aspirin, fish oil, vitamin D. I had wheatgrass juice several times a week. I ate fresh organic fruits and veggies and switched my dairy to full fat. I kept straight the estrogen patches and the lovely not-oral administration of the estrace pills (interesting tidbit--the real deal is turquoise, while the generic is periwinkle...both pretty colors but still disturbing when seen in the nether regions), I did all my progesterone shots and suppositories. I felt like I was stuffing myself like a Thanksgiving turkey full of medications that would make these miracle embryos stay. We had a fabulous donor with a great track record that we have now screwed up. We had everything going for us, and it didn't work. As so many people have said to me, it is bad luck.

How am I doing, now that enough days have passed that I am probably not as raw as I could be?

I am...ok, actually. I had a plan when we went into the DE IVF. That plan was that we would absolutely plan for having to do a frozen as soon as possible right after our fresh cycle if it failed. We weren't planning for failure; we would absolutely have loved to be spending the frozen money on a summer vacation or maternity clothing splurge, but that wasn't what happened. So as much as I am furious and upset and dulled by the fact that our DE IVF didn't work the first time, I have a second time to look forward to that isn't far in the future. I have no idea when it will be, because our consultation is in a couple of weeks, but it will be as soon as possible with no waiting because we planned for it.

Planning is part of what keeps me sane. I need a plan. I am partway there, because I was able to go on the Pill with this lovely failed period (just imagine what this must be like when I've worked so hard to have a nice, plush lining...), which saves me some time before we can start the FET. I have a date for the consultation, and hopefully that meeting will give us the next very important date. Because I need those dates to stay sane. I need something to look forward to. I need medication schedules and timetables.

But I also need a change. Even if it is a bitty one. I have been gathering information and will be presenting it at my consultation. I am not expecting for them to tell us that it's all over, that this didn't work the first time and so it's not worth it to do the frozens. I am also not expecting them to tell us that they have magical answers for what to do next time. So I am coming prepared with some suggestions, and some research-based reasoning for why I think these are good suggestions. To stay sane, I need to be an active participant in my plan. I am not a medical expert, I don't have a medical degree and I certainly am no RE. But I do think that I have gathered quite a bit of knowledge by proxy and I would like to ask a lot of questions and have honest answers as to why or why not something could be a good idea. Because we are at a loss. Could we have just been unlucky? Maybe. Could I need something extra? Could there be an extra piece that could be added in to make things a little more likely to work? Possibly. It doesn't hurt to gather and ask.

This is my time to be crazy and remove the restrictions that I've had since getting into this cycle. Which is interesting, because everything that I did is because it's good for my body, but none of it affects my uterus directly. Alcohol and caffeine consumption are known to have affects on gametes like sperm and eggs. But on a pear-shaped organ that holds the precious cargo? Not so much. (Please, please correct me if I'm wrong here.) But because I want optimal conditions for implantation, I cut those things out completely. I'm giving myself two weeks to put them back in, and originally I was like, "Bring on the bender! I am PISSED that nothing made a difference!" But, maybe my FET will be sooner than later. So I had quite a few cocktails on Negative Day but then have been relatively tame since. Well, there was the night we watched Argo and had two bottles of wine between the two of us, but big whoop-de-doo. I am enjoying some wine and I love the return of my morning coffee, but it will be pretty easy to give them up again. (See, this is why I need dates again, because I don't know how long I have to enjoy myself first with abandon and then more sporadically.) Usually I stop taking my vitamins for a little while, especially since it pisses me off so much that I have been taking prenatal vitamins for four years. My hair and nails should be just AWESOME. It is not a good consolation prize. Especially since my nails are short and caked in dirt since it's gardening season, so if anything it irritates me that they grow so fast. I quit my vitamins for a day and then went back on. Because I am hoping that this mini break is so brief it barely qualifies.

Things are exploding now...Echinacea,
stella d'oro daylilies, delphinium,
balloonflower, daisies, yarrow,
scabiosa, thrift, mallow, lavender,
Russian sage, mini hollyhocks
The butterfly garden, filling in and
in bloom
I have been gardening, and shamelessly posting a billion pictures up on Facebook of my garden. I post new pictures nearly weekly. And you know why? Because all of my energy is going into these plants now that I can't put it into growing something inside of me. I can't seem to make babies, but I can grow some beautiful beds that are surviving our torrential rains pretty well. I feel like (and this is me being sensitive possibly) people are like, "enough with the pictures of your gardens!" I don't post them daily, I post them when there's a change. Kind of like all of those pictures of adorable children in different outfits and wearing the month-birthday onesies. And the ultrasounds, although thankfully my feed has been pretty blissfully free of those for a while (it won't last, I'm sure). You post these pictures because you are proud of your cute kids and the growth of your babies. Well, I'm proud of the botanical babies that I've nurtured and cared for, and that's why I do it. It's proof I can grow something that will thrive. It's proof that I am fertile outside of my body, outside of my house (still can't grow a houseplant to save my life). I hope that will change and I can be just as fertile inside, but for now it's what I've got.
My backyard shade garden,
a little blurry. Hostas, cranesbill, astilbe
My monarda (bee balm), with buds for
the first time. These will be lovely
bright spidery looking things.

I am not off of Facebook, but I am a speed scroller. I go really fast past babies and pregnant people. I "like," but I don't comment. If you comment then your notifications blow up with everyone else's comments, which for births and birthdays and pregnancy related posts are just too painful to see. I don't need my phone to scream at me that everyone else is enjoying the family life while Bryce and I are left behind, again. Please do not misconstrue this. I like updates. I am happy for new babies. I am happy for birthdays and milestones and holidays. It is just so painful for me to be bombarded with them when we just can't seem to make this happen, not yet anyway. I could easily get off Facebook, but I like to be connected. I can be around kids, but not kid-centric places. I love playing with other people's children. But please, please don't ask me to go to a park or meet up with a bunch of people with kids or go to the zoo or the children's museum. I don't even think I could go to The Barn Owl right now because it just reminds me that I DON'T HAVE ANYONE OF MY OWN TO TAKE THERE. That Bryce and I would again be the creepy childless people, hopefully trolling places that are family-friendly like we're previewing what this must be like, but then tearing up and needing to run out. I actually get panicked in situations like that. I act unpredictably. Ask my friend who went with me to a farmer's market on Sunday. I was fine, and then I started bobbing and weaving and avoiding the many, MANY pregnant people and strollers and slings that were everywhere. Maybe I should have just sat down on the pavement and absorbed it all. Maybe I would have left miraculously pregnant. Instead I developed tunnel vision and an intense interest in fernleaf dill and cream-top yogurt. So, please don't be offended if I can't come to an event or I have to leave a situation quickly that is causing me to be upset. I am grieving, and the last thing you want is to have me fall spectacularly apart in the middle of an outing or a party or whatever. Avoidance is my friend right now.

I am trying to get myself in shape (again, again, againagain). Fertility has done a number on me. I used to be so good at losing weight between cycles, and then it just stopped happening. I am not happy with myself right now. But, at the same time, I cannot do strenuous exercise and risk messing up my cycle. (Which is really funny since my cycle is plenty messed up on its own and it has nothing to do with my weight.) I am not ridiculously heavy. I'm not even at the heaviest I've ever been, not even close. I am a size 12, and I'm 5'6", and I'm well endowed in the bustular area, something that does not change when I do lose weight. If anything I look better when I am a little overweight, because I have something to balance out those ladies. But I feel soft. I feel squishy and lumpy and out of shape. I walk a lot and I do yoga/pilates tapes, and I have them back in a rotation after being in the cycle where there are weeks when you can't do anything. You can walk, but not strenuously. This really confuses your body. Add in all that good full-fat dairy and whatnot and this is a frustrating time for my body. I am told all the time, "do not worry about this right now." And it's true--I can't add the stress of being less than happy with my body to the stress of being really pissed that my body can't do the very thing it was designed for. I have bigger fish to fry. But, in these weeks leading up to my next FET, I am going to do everything possible to balance things out, to do my yoga and pilates and do my walks and hikes and feel healthier. For my sanity. (Note: now is not the time to invite me to join Weight Watchers, or try a new diet fad, or try those crazy Insanity tapes. I probably don't even need this note in here, but sometimes people like to be helpful and it just makes me feel worse, so I'm going to proactively put that out there.)

There you have it. I have my moments of feeling overwhelmingly sad, and my moments of wanting to break something for the pure satisfaction of it. Any reasonable human being would, in my shoes. But I'm trying my best to keep my sanity and get myself ready for our next big adventure, which is hopefully the one that finally gets us off this crazy ride, if only until we try for a sibling. (See? Eternal optimist.)

Monday, July 1, 2013

Protocol Question

Hello Donor Egg Peoples,

I would like to ask a favor. Would you mind leaving me a comment with your protocol? I am curious about what is typical for other people in the DE IVF world, for fresh and frozen cycles. I am feeling really sad after my failed fresh DE IVF, but want to give my frozen DE IVF followup cycle the best possible chance. So, if you wouldn't mind sharing, I would love your input!

Here is the protocol I was on for the fresh cycle:

Lupron 10 units then 5 units once estrogen starts
Vivelle patches in a dizzying array of on-off designs that have left rectangles of adhesive still on my belly
Estrace 2x per day administered vaginally (hellooooo, pantiliners)
Once day of retrieval has happened, PIO injections in the morning with continued estrogen support
Three days before pregnancy test, 100mg progesterone suppositories
Baby aspirin throughout
Valium day of transfer, 45 minutes to 1 hour before procedure

For a frozen cycle, the patches are replaced with injectable Del Estrogen every three days, everything else stays the same.

Thanks for your help!