Sunday, May 20, 2012

In a Bind(er)

So I have two confessions to make. One, I am addicted to office supplies. I really DO sing “It’s the Most Wonderful Time of the Year!” when Staples has their back to school sale. Having a hoard of loose leaf paper and report covers makes me feel all warm and fuzzy. Colorful paper clips, thick notebooks, binders in all sizes and colors of the rainbow, post-its…oh, the post-its…swoon!

Yes, I have a problem.

Secondly: change of anything related to my daughter’s medical routine fills me with superstitious anxiety. My daughter’s caringbridge page has the same sunshiney motif along the old school margin that it did the first day I posted. I just can’t change it. I know I should upgrade to the new format, it’s so high tech, but I can’t.

I bring the JICB (Just In Case Bag) to every single hospital visit. Going to check eyeballs? Throw the bag in the car. Scan days? Yup. Regular visits? YUP. And you know, back in December when they would not let us leave ye olde CHOP because ye olde shunt was clogged, I felt a smug satisfaction as I put on my hospital worthy pjs (ie yoga pants and a sweatshirt) and brushed my teeth, ready for my quality time with the vinyl extend-a-chair. Yeah, unexpected medical smite? Bite me! I didn’t change from MY routine. Hah!

And on every visit I lug G’s Binder O’ Medical Whatnot.

This binder was given to us in a giant Gift Bag of Yikes on our first day in the oncology inpatient unit in 2004. The binder (with handy divisions for lab results, medical expenses, current meds, and doc business cards) was plain white, and came with the Guide to Childhood Brain and Spinal Cord Tumors, a Willow Tree Angel, a journal that said “Hope” in inspirational leaning script, and probably other tchotchke I’ve since forgotten. I’m sure there was a stuffed animal for G, the 3nd of about 27,000 we’ve accrued over the years. The first was the Care Bear promised for being brave during the MRI. The second was this butt-ugly hedgehog that the child life specialist gave her during our first clinic wait. Yes, we still have it.

ANYWAY, I rifled through that bag while G slept off shunt surgery. I went through each item, nearly incoherent with grief and lack of food (I kind of didn’t eat for the first 10 days after diagnosis). I wrote all sorts of despairing things in the journal, and started trying to put questions in the binder, things like “will she lose her hair” and “will she be able to have children?” Nice questions to ask about one’s 6 year old.

When we got home, I went and got scrapbook paper and stickers and a stamp, and made a pink cover for the binder that said “Genna”. Somehow, making it cute made its purpose less menacing. How could something so pink and cutesy be a chronicle of woe?

There are e-mails in there from our first days. Scan reports from G’s one horrible biopsy time. The list of “A’s Time”, the things we would do for my son, our 9 year old left in Jersey to cope with the complete upheaval of his life. The business card holder is filled, and a few medical abstracts are stuffed in the pockets. I finally had to start taking out lab results and chemo facts each time G failed a protocol, the binder was getting too heavy to carry. Those things now FILL a crate in my closet, next to the old cassette tapes, my stamp collection from middle school, and religious art relatives gave us (and which Dave feels too guilty to donate to a yard sale). Heck, G’s on her second or third chart at the hospital, they start a new file when the first one gets to about 4 inches thick. My early notes are still in the binder, even though now I hardly write anything when we’re with the doctor. I try to sum things up when we leave, but that’s usually on a scrap of paper or a post-it. Smaller papers are easier to balance on my lap. Post-its are God’s gift to the paper obsessed.

yeah, good times from days of yore. sigh.

Anyway, I ALWAYS carry the binder. I can’t leave it at home. One time I moved it out of my normal bag, and I couldn’t find it, and I almost had a panic attack about not bringing it. It is battered, and smudged around the edges, and generally ignored when we are AT Club CHOPARONI. But it comes with us.

So two weeks ago we start up chemo #5. Our nurse, C, has been with us since the famous Freakish Port Break of 2005 (when the port broke and floated into G’s pulmonary artery. Good times). She said, “Hey, did you get a binder?”

So I answered, why yes, I got a binder back in ’04, and HERE IT IS, as I dug into my massive bag of complete over-preparation (Tide pen? Got it! Cell phone? Got it! Sewing project as yet unstarted? Got it! Tissues? Got ‘em! Inflatable raft? Ok, maybe not that.  Large print word find for G in case we get stuck a long time? Got it! And yes, one pocket is reserved for Cadbury mini-eggs). Yes, I have a binder in here too!

But no, apparently CHOP got some kind of massive grant, and there are Sparkly New Binders with a cloth cover and a carry strap and all sorts of CHOP specific info and fabulosity galore. And C was going to get one for Me.

I could not say no, this was like the Mother of All Office Supplies, and I could pick the color (duh, Pink for G) and it can be lugged outside of my increasingly overloaded scrapbooking bag that I bought simply to be a hospital bag back during stable days.

And Lo, C brought me the glorified Trapper Keeper binder thing with the handy carrying strap and the CHOP logo stamped on the front, and I was well pleased.



I look at the old binder, and think of all it has come through with us. I remember making that cover, defiantly fighting back tears of despair as I stuck those cute letter stickers on the front. That binder held so much of our early journey. Will the fancy new binder even work as well?

I fully acknowledge the patheticness of this.

A lot of the cancer info in it I don’t need. Been there, done that. I have to create a section for labs (after Transfusionfest ’06 I am meticulous about tracking labs). I need to decide then will I be carrying too much if I lug the new pink binder AND my massive many-pocketed scrapbooking-turned-hospital-bag? I need the bag, it’s covered with pins…

   *My Wall of Courage pins, one for my 8 year survivor and one for my 4 year survivor, and one that states “I’m Wearing Gray for My Daughter”.

*My Yetifunk pins, commemorating my brother’s ultra-marathoning for a cure for NF.

*A St. Baldrick’s pin for my friends, the 46 Mommas

*A Friends of Jaclyn pin—for my G, adopted by RU LAX.

* A 52 bELieve pin for Eric LeGrand --injured RU football player, ultimate Hopemeister.

*Sometimes a bee pin for the Beez Foundation (a pediatric brain tumor group), but that pin often falls off.

* A festive, rainbow colored “Brain Tumors Suck!” pin, just because.

* And finally, a gray ribbon “No One Fights Alone”

Maybe I can stick pins on the binder, but I’m not sure.

I am having a moment of self-realization as I type… I am a hoarder of motivational pins too, apparently...

So I’m in a bind. Which addiction will win out? The snazzy binder? The irrational anxiety about changing up my old binder?

Maybe chemo #5 merits a new binder. God knows the festive new hot pink insert folder for Sorafenib didn’t do SQUAT in the old binder…even the special addition folder for the daily dosing diary, fully decorated with special GIRAFFE STICKERS DID NOT DO SQUAT. Hmph!
ok, so the hearts all fell off and THEN we added giraffes. Meh. The desserts stayed.
And this is one of the silly, odd, exasperating side effects of brain tumor in THIS mom’s brain…the complete inability to make a simple decision about which office supply should be the thing I have panic attacks about leaving at home. But really, I guess that’s better than panicking about the info INSIDE the binder, right?

The new one did come with extra little sticky divider things that I can write on…ooooh…
oooh, extra sticky divider thingies...
Either way, I need to figure it out before Dose Dos, tomorrow. Hm.
Maybe I can write pros and cons out on some post-its…


  1. The pretty new binder most certainly should win this internal battle. It is so new, so full of hope ~ like and invitation to put thoughts of failed chemos and surgerypoloozas behind. And if you must, I suppose you could store that old binder with the religious art if it is just too painful to do anything else with it. We are on binder number two (no where near as pretty, or functional as yours), but it felt really good - really good - to start fresh. Praying for you always.

  2. You know, I didn't think of it like that...that's a great way to look at it.
    Of course I've done nothing to get either one ready for tomorrow, and I actually do have to start writing things down again so we know how to make this ok for G...
    thank you!

  3. I agree. Fresh start. New hope. PINK AND SPARKLY.