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).

Wristbands.
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.



6 comments:

  1. I am so glad I'm not the only "nerd" that has saved all the paperwork! I mean, I need to have SOMETHING to show for all the money we are spending, because it sure as heck hasn't been a baby. :)

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    1. Ha! I definitely felt a little nerdy color coding everything and sorting stuff that a "normal" person probably would have tossed... It is interesting to see the whole journey in pictures and paperwork and documentation though. I hope a baby makes its way into the photos and paperwork soon for us both!

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  2. My collection is not quite as extensive, but I do have a little notebook- I also photographed it for my blog, back in February- that I collected my stats in. My doctor thought I was nuts as I recorded each follicle size with Wandy still inside me, but it's nice to see that I am not the only one. It gave me a sense of control, and also helped me to better understand the progression of my failed cycles- and let me know it was time to move on to donor egg. I'm not sure what to do with all these "souvenirs."

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    1. I definitely agree about the sense of control! I would scramble to get them down before getting dressed, but that is some dedication doing it with that thing still inside you! Hmmm, you have the winning lotto ticket, but it's hard to part with the history off all the stuff. I plan on keeping the notebooks (I'm a packrat so who am I kidding, I'll keep everything), because it is a record of the years I spent trying to make this little person in my head a reality. As crappy as the time is, it chronicles a whole era in your life leading up to that beautiful success. Some would say that's holding on to the past too much, but I kind of look at it as primary source material... ;-) I still have photo albums from my first marriage because as awful as most of that time was, it was still my history. So there's my two cents on the "souvenirs..."

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  3. I am on the opposite end of the spectrum when it comes to life/stuff in general. I toss EVERYTHING. My husband wants to keep little moments, reminders, paperwork, etc. I, on the other hand, have a compulsion for purging stuff out of my house. I'm really trying to be a better patient and keep closer track of my medical stuff lately. You are a great example of organization in this way.

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    1. Thank you! If you're going to be a pack rat, you'd better be organized about it or risk ending up on some hoarding show. I need to learn the purging from you though, because I think letting go is a good thing--the records are good, but really, really do I need all those bracelets??? ;-)

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