Tuesday, October 14, 2008

Carnival Spirit

I named this new blog Cancer Carnival because I wanted to get at the feel of the pediatric ward. It is brightly colored, surprisingly friendly, and always a whirlwind of activity that is at once exotic, enthralling, and frightening. And I looked up the definition of 'carnival' on Merriam-Webster, and they included both of the following:

a) "an instant of riotous excess"
b) "an organized program of entertainment and exhibition"

Both of which ring true to me. For one thing, hospitals must create enough trash to fill themselves to overflowing every day. I think there is a small army of men in blue polo shirts and scrub pants who do nothing but remove garbage all day long, because otherwise all the needles and plastic tubing and plastic bins and Styrofoam cups of coffee or ice chips or water to take pills with, all of the vomited up ills, all of the cold, bland hospital food thought better of upon sight; it would all just keep piling up until we suffocated if there weren't diligent, underpaid workers constantly shuffling it out the back door.

And then there is the excess of the medicine itself. From the official treatments of chemotherapy and radiation that nearly kill you as they heal you, to all the million other drugs you take to get you through, it is truly the definition of excess. Don't get me wrong--I fully and willingly participate in the excess. I ask for the IV drugs even when I know the pain or the nausea or the anxiety could probably be tamed with a pill; but why bother when the high is so much faster and nicer and longer with a shot? Why else allow them to poke so many wholes in me?

And let's not forget the emotional excess. No, emotional is not the right word here--there is that, of course, the fear of death, the loss of independence, of normalcy, and a whole variety of other anguish that I will surely explore in these electronic pages--but what I mean is the excess of material goods that result from the anguish of others. All the sorrow and pity and guilt that is turned into both individual gifts (I have already been the recipient of a generous gift certificate at the Chocolate Room--Thanks Mocky & Brad) to whole foundations dedicated to making sure sick kids get cool presents (while inpatient on Valentine's Day 2006 Mikey's way gave me an ipod!) to grants to the hospital for things like free all-day parking in Manhattan whenever I have an appointment at the pediatric clinic.--It's like walking down the aisles of carnival candies and prizes and not having to win any games or pay for any snacks put all the hawkers are actually trying to give you everything. Just 'cuz your bald! (There actually is a literal candy cart that comes around the inpatient peditric ward on Friday nights with all the major brands of candy and fresh popcorn and lets you take literally whatever you want, for free. This is not a joke.)

And that's just one definition! The other one that struck me--an organized exhibition--well, sometimes I wonder how organized they are. For example, on a day like today, when I got there, as requested, at 7am, for a surgery I wasn't called for until well after noon (they needed me there in case there was time earlier, between other procedures). At 10am they woke me up and told me I needed to the 18th floor for an echo cardiogram. But since they aren't used to dealing with adults, they forgot that the 18th floor is closed for construction of something and echo is on the 4th floor in a different wing of the hospital now. So once I find the right waiting room I sit there for an hour (reading, of all things, cosmo girl), and just when mom and I get to the point where we are ready to ask if they'd somehow left us off the list (having seen the waiting room entirely flip over), mom walks up to the counter while a young woman finally appears to call my name and brunette behind the counter simultaneously announces that I am needed back up in Peds because the OR opened up. So I walk myself up from the 4th floor, A wing, to 9th floor B wing, just in time to be wheeled by gurney to the 6th floor, M wing, where I wait for over two hours before I am actually taken into an OR.

Oh, and by the way, no has at this point explained to me why I need an echo cardiogram. We did get some kind of explanation from the surgeon before he cut me again, but he was a little put out since it had nothing to do with what he had to do--place a 'port' under my skin on my upper right chest. Eventually--back in Peds around 6pm after sleeping off the wonderful pain meds and anesthesia--I did get an explanation about the echo: there's a blood clot and scarring on a vein near my heart where I had some central lines last time around that may or may not be new but they just noticed it so they need a better look to find out if they need to give me some medicine to dissolve it. Scary. But apparently no big deal.

Of course, lots of things are no big deal when you also have cancer.

But all of that blather was really just supposed to be a clever little introduction for the real topic of of this entry. What I really wanted to talk about was my spirit. and getting back to that carnival spirit I was so often praised for over the last three years. I hadn't realized myself how badly I was taking all of this until the people around me started telling me bluntly.

This morning my girlfriend left for Vancouver. We spent an entire year, August to August, trying to live and work in the same place as one another, and all our efforts finally paid off when she joined me in Vancouver, Canada, this past August. And now I am back here. In the city that I love, the apartment in Brooklyn that I love, with my best friends in the world--at the hospital that I cannot praise enough. But I am sick in the scariest way and my girlfriend is trying to immigrate to another country, while I, ironically, sit here with a valid Canadian work permit wondering when the hell I will be able to work again.

Last night, as we were saying our good byes and plotting her next visit, and wondering how we'd both get through this, she practically begged me to take care of myself. She couldn't stop repeating that what she needed me to do most to help her through this is to take care of myself and find a way--hopefully several ways--to release all these feelings I've been having, all this anger at my reality. And then today, at least twice, my mom got all serious and worried and sad looking and I could see the desperation in her eyes as she tried to reassure me that it would be all right, that we will get through this again, that it won't be that bad, that the obstacles to living the life I want are not so insurmountable. And I told her, sincerely, that I knew that. And she said "but you just look so sad all the time."

And while it nearly broke my heart to hear the tone in her voice as she said that, I think it was just the trick. I think the only thing it really broke was the frozen veneer I've had encasing my heart this last week. I think I am finally ready to let some of it out.

On the way home today, I came up with the idea for this post, I thought maybe it would help me get back some of that magic 'carnival spirit' that got me through this for the last three years. And I think it did the trick, but not in the way I expected. Writing all the 'intro' really got me smiling and laughing at the absurdity of it all again--and when I can rise about the misery of it and laugh at all the little contraindications and inconsistencies and, well, nonsense, that's when I know I will be O.K.


rebekah said...

im thinking about you.
xo, rebekah

Ethan said...

Tuned in... with caring thoughts.

Also, maybe these guys are able to express how you're feeling?

Alma Garnett said...


It sucks that you are going through this again. Here is a creative exercise in anger purging that I've done with friends in the past; don't know if it will help but it can:

1. Get a large sheet of paper and markers
2. Draw for 10 minutes; everything that is hurting you, angering you, scaring you, blocking you, frustrating you
3. Tear out each drawing
4. Go outside with a bowl or small pile of rocks/bricks that can withstand flame / create a circle
5. Look at each drawing and throw it in the circle one by one; perhaps with a few other flammable items
6. Ignite with match
7. If you are outside or in the woods, roar with anger

Maddie Fix

Alma Garnett said...

ps; #7 was oddly worded. you can roar with anger wherever.


Chuck said...

Oh man, Rose, were you at the Summer Institute where we did a vesper service just like the that Maddie is describing? The only difference is that we (in our ignorance) put the pieces of paper to burn into a chalice... a pewter chalice... a pewter chalice that had been donated as a memorial for someone, and borrowed for the purposes of the ceremony either by Dan Greenfield, or Mango, or someone else. Turns out pewter melts fast - who knew? So yeah, the key part of Maddie's advise is definitely step 4.

-Chuck McNulty

Mayumi said...


sending all my love your way. thank you for writing about your experiences so we can all stay updated and so you can help others understand, too.

you're my hero.


Mayumi said...

OH!! And if you ever need fuzzy, cuddly, lovey-dovey therapy, you can totally borrow our new puppy, who will lick your face with abandon and squiggle in your arms endlessly and make you feel like The Most Popular Girl Ever.

Julie said...

I love to read your writing and HATE that this is why your blog is back. When you are healthy again I hope you'll keep blogging.

Lots of love from the boys and me.

Rachel said...

Love you.

Not a Cancer Patient said...


I DEFINITELY need "fuzzy, cuddly, lovey-dovey therapy" from your puppy! when can we arrange a play date?

Gene said...

Keep up the carnival spirit. I saw your dad today, and he added a few details on what it's like to be an adult with such a serious disease in a hospital dedicated to treating (and entertaining) children. He's still strong under his doubly difficult cercumstances.