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…

Monday, May 14, 2012

To the creators of "Warrior Eli", a few things you should know

The story of Warrior Eli went viral on Mother's Day--telling of a mother of 11 who died in an accident just before giving of her children is a relapsed cancer survivor named Eli.  By today, this story was revealed to be a hoax. 

To the creators of “Warrior Eli”, whoever you may be,

I don’t know why you thought it would be fun to create an elaborate myth about a child with cancer. Maybe you were inspired by Lifetime movies or Grey’s Anatomy or some sort of dramatic fiction that makes childhood cancer seem c’est tragique. Maybe you thought it would be funny to see if you could get your sad story about a young mother of 11 dying just before giving birth, while one of her young brood battled leukemia, to go viral. You don’t seem to have wanted money, since you asked for donations to go to Alex’s Lemonade Stand, a legit charity for kids who really do have cancer.

Honestly, I don’t really give a crap about why you did this.

And honestly, this isn’t the first time I’ve witnessed this. I, too, have believed a liar in the past, sent gifts to a phantom child. I learned from that experience.

Now it’s your turn to learn a few things.

One, most people are good, deep down. Parents of children struck with catastrophic illness can be some of the kindest, most generous people on the planet. This isn’t to say we need to start handing out halos –people are people, no matter how smote-- but folks who have walked through fire are the first ones to hand out buckets of water, if you know what I mean. When they hear that someone is facing the same tragedy they have faced, the FIRST instinct is to help, to assure the new family that they are not alone. They hurt FOR each other, because they so intimately know that pain that this kind of diagnosis brings. Even though it hurts to engage with other families sometimes BECAUSE of this shared pain, these parents do that.

So when you lied over time about “Warrior Eli”, you hurt real warrior parents. You should know that. You took the grace that these parents have to give, and you made a mockery of it.

Shame on you.

Second, your lies, your desperate appeals for the sympathy and concern of strangers hurt the real warriors, the children truly battling for their lives.

Last week we spent about 5 hours in the Alex Scott Day Hospital, named for Alex of Lemonade Stand fame, named for the money raised by the lemonade stands that funded this amazing facility. I sat there, watching poison drip into my child, and I had trouble believing the evidence of my senses. Yes, we were in the hospital. Yes, G was getting her port accessed (which means a ¾” needle stuck in her chest, not sure your “research” for “Warrior Eli” covered that). Yes, nurses double double checked G’s ID to make sure she was getting the RIGHT poisonous cocktail. Yes, my warrior smiled and gave me a thumbs up even though she was so scared, so scared about what the chemo would do.

The entire afternoon was surreal. A friend came to visit us, and I am not going to lie, I am always happy now, after knowing about people like you, people who lie about their children being sick, I am happy when someone sees us in clinic, sees my child like this. If I can’t even believe this is happening to us, why should other people?

You hurt the credibility of real families battling. You made us doubt when we should be feeling compassion.

Shame on you.

As a side note about Alex’s Lemonade Stand, who you dragged along , maybe to give your lies more credibility?: Alex was a true warrior. Because of her, kids like MY kid have a better place to receive treatment. When Alex was battling, the day hospital was a large room with a ring of chairs around a nurses’ station. Now children can have some privacy, if they want. They have working tvs and video games, there’s a playroom and a little kitchen where they can get a healthy bagged lunch while they are getting treated. Alex didn’t live to see this. You insult Alex and her work and the legacy her family has worked so hard to foster.


Finally, you need to know that childhood cancer isn’t a means to getting noticed, or a way to look noble and cool. It’s a battle for life. It’s not pretend, or a play, or something you can treat lightly. You want to look noble and cool? Go HELP kids with cancer. Use your creative energy for something GOOD. You used pain and suffering of children for your own satisfaction.
Shame on you.

I don’t think there will really be any tangible repercussions for what you did. You simply lied, and people believed you. You didn’t get money, you didn’t ask for anything, from what I can tell. You simply lied, and stole the emotional resources and compassion of people that could be better used for REAL catastrophe. I do hope that maybe some corner of your mind still possesses a shred of decency, and that maybe, just maybe you’ll take some time and volunteer for Alex’s Lemonade Stand, or in a children’s oncology ward, or with Team In Training in honor of “Warrior Eli’s” leukemia. Maybe you can try and learn just a little bit about the deep truths discovered when you spend time with a child fighting for their life.

If not, then shame on you.

Tuesday, May 1, 2012

Excuse Me, Your Stress Is Showing...

Excuse me, your stress is showing…

“Mrs. Camiolo,” one of my students called from the back of the room as everyone pulled out their textbooks for class. “You’re…you’re wearing flat shoes!”

Within seconds a full blown discussion of how odd my choice of ballet flats was broke out in the classroom. “You look so much shorter!” called this young lady (who, even when I am wearing flats, stands about 4 inches shorter than I).

I felt some surprise that my students NOTICED. I mean, really, I am an antique compared to them, my wardrobe is practically medieval (remember how old 40 seemed when YOU were 15? Egads!) . And most days I do make a conscious choice to wear tall shoes. I feel like it gives me an edge to be 5’10” in a classroom full of teens. I feel like An Official Teacher somehow, which is kind of funny since so many of the teachers of my youth were middle aged women who wore comfortable shoes and polyester slacks with a permanent crease, men who only had one pair of nondescript “school shoes” , or nuns, who wore the most practical (and often, no disrespect intended, not super snazzy) of footwear at all times. But for me, now, tall shoes = confidence.

Anyway, the moment amused me. I told them that by tomorrow I’d likely be in Converse, because that was just how my week /month/year was going. I did suggest that the Student Council members in my class work to get us a Chuck Taylor day, but I think that just confused them.

And once again, I was brought up short by the realization that yes, my stress is showing.

Granted, stress showing through the choice of flats over heels is really kind of silly. Ok, it’s not kind of silly, it’s uber-silly. But it’s real. I just didn’t have the mental energy to wear tall shoes. I just didn’t care.

I also noticed in the past week that people who know me at all KNOW that my normal answer to the question “how are you?” – “super fabulous, and you?”, is a big fat lie. People who know me less well (or just don’t feel like dealing with lurking drama) just take it as genuine (sigh, I’m sorry), but for the first time in the past week I’ve had folks (who I care about a lot) stop short and be all sympathetic and supportive when I give my stock response.

Hey, even my sarcasm is failing to hide the stress! This could be serious. Houston, we have a problem…

I’m not sure what you do when stress starts to ooze out from every possible crack. Sometimes exercise, vitamins, cutting back on caffeine, praying extra, trying to go to bed earlier, breathing deeply, shopping, eating chocolate, running, listening to music…sometimes NONE of these things even remotely take the edge off stress. Heck, if I hear the song “If I Die Young” ONE MORE TIME in my car, I am going to have a conniption. No joke, 3 times in the past 2 days!

Even trying every zenlike trick in the book, I still feel like I’m crawling out of my skin. My poor 9 year old keeps asking me at church if I’m ok, I look so sad. Aaaaagh! Dang.

For my kids, the ones I gave birth to AND the ones I teach, I have to find ways to keep my zen, even if it means stapling it to myself somehow.

I opted for my 3 inch heels again today, and my sophomores felt better (yes, they noticed). I may just bring an auxiliary cable in the car so I can use my iPod and avoid any unfortunate Band Perry incidents, and maybe I can bake something. Whatever I do, I have to figure something out, because just like a live performance of Nicky Minaj, nobody REALLY wants to see my stress showing.

So…anyone have ANYTHING else that I haven’t tried yet? Obviously the circumstances of life here are kind of epic, so within that context…what the heck do you do so YOUR stress doesn’t show?

Maybe I could go SHOE shopping…hmmm. That could be win win for all concerned…