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Sunday, March 27, 2011

Bubble Boy's Big Day Out

Have been free from the hospital since Friday night!

When I left the hospital, these were the facts:
*I didn't have a bacterial infection in my blood
*I seemed not to have any infection/virus/anywhere
*I felt fine
*Some of my cell counts had risen, ultimately taking my overall condition to a place where my doctor felt comfortable letting me leave.

But even though I've been released into the wider world again, the major theme of the weekend has been an ongoing debate/negotiation between me and my handlers (parents) about what behavior is or isn't going to put my life in jeopardy.
(Fresh fruits and vegetables have been allowed back in, but only alongside what would otherwise be utterly compulsive behavior, like scrubbing the outside of my avocados with soap before cutting into them.)

Yesterday passed without conflict as it was very rainy and I was tired, so I had no desire to leave the house. Shahab—my father, without his Dr. Dad cape on—was kind enough to drive to Blockbuster and rent us several movies, all with the common theme of good triumphing over evil. This includes the entire Lord of the Rings Trilogy. I think I'm supposed to envision the cancer as the Evil Eye of Sauron, my spleen is Mount Doom, and all the cancer cells are a grimy army of snaggle-toothed Orcs. My will to heal and positive body responses are...hobbits? Sam and Frodo? Rudy and Elijah Wood? No, no, much better: I'm Viggo Mortenson! Aragorn, King of Men! Yeah!

Anyway. Today raised more of a challenge as the sky lightened up and we began to get stir crazy. There is only so much sitting-in-the-house-preparing-for-cancer-treatments a girl can take.
I wanted to take a drive, and I wanted to go to Target. When I put this request to the keepers of the keys (it is their car anyway), a series of negotiations ensued, with the following compromise reached:

I would be allowed to drive up into the hills to Three Rivers. Gas would be needed, and Annie would pump it. I would not leave the car or touch the gas pump, or anything at the Gas Station, an obvious location for insidious germs and other unsanitary residues.
Annie would be allowed to enter Reimer's Candy Shop (one of the few destination points in Three Rivers) but I was to sit outside on a bench and not enter and/or touch the kid-covered candy counters, or anything else the general public may have exposed to their random afflictions.
We could go to Target, but I was to sit in the car and wait for Annie. Same reasoning as above. End of discussion.

And what a lovely drive it was. Annie was finally introduced to a part of California more beautiful than the industrial hospital courtyard (see photos) and we were able to get out of the car, admire the river and the rocks, and breathe fresh clean air.

By the time we got to Reimers, I was thinking of diverging from The Plan. For one thing, I had to pee. Public Restroom stops had somehow been left out of the negotiation. (Of course, I'd just as soon have gone in the bushes, but no private ones presented themselves.)
Reimer's port-a-potty was immediately ruled out without any fuss from me. Then Annie went candy shopping while I sat on the bench, held my pee and pondered the cost-benefit analysis of breaking The Rules.

After all, I understand the reason for The Rules, and they are legitimate. The consequences of getting even the littlest bit sick could be dire for me at this point. Any kind of infection in my body could mean more hospital stays, major setbacks, delay of cancer treatment. My inner Aragorn could be rendered powerless. The Orcs could trap the whole f*cking fellowship in a cave and continue to spread Sauron's evil empire. (In other words, it could get really bad.) With that in mind, the question becomes, what risks are worth that possibility? Is a trip to Target really worth the future of Middle Earth?

No, a sane person reasons, no it is not. So much better to be safe than sorry. But it is a struggle to train ones self to go from dirt-eater to germaphobe overnight. How long has it been now since I have openly scorned antibacterial hand gel!

It was the pee that broke me. Once I was in Target using the restroom, this particular battle was lost. Annie and I re-defined The Rules to suit the mission. I would not touch the cart. We would purchase antibacterial hand gel.

That settled, I thoroughly enjoyed the Target run. I now have quite the collection of stylish Mossimo-brand loungewear, perfect for relaxing indoors and idling away the days between chemo treatments. I also bought notebooks, one of my very favorite things to buy! I selected one special binder to collect my medical documents, one lined composition book to take detailed notes with medical personnel, and one tiny spiral notebook in which to record spontaneous inspiration for future blog posts. (See below).

And so tomorrow I will take my notebook to my 2 p.m. appointment with my oncologist—Gandalf?—where we will discuss my diagnosis, and his plans for my treatment. It is he who can shed the most light on immediate fate of the Fellowship. As soon as he does, I will share it here.


  1. I am glad that you guys are getting to relax. Keep the posts coming, it distracts me from worrying and how crazy work is right now! Love you guys. Kia you are such an awesome writer!

  2. As a dirt-eater myself, I'm with you on the difficulty of turning oneself into a germaphobe overnight.

    Remember our little competition to see who could go the longest without showering? I'm sure our alt-weekly coworkers appreciated that one. ;)

    I married a dirt-eater, too. The other day, his hair was so greasy it was clumping. Clumping. He admitted he didn't really know when the last shower had taken place.

    Keep up the good work, Kia. Clean, clean, clean. Your new mantra.

  3. i have never ever in my life had a desire to watch the lord of the rings...until now...thanks kia...

    j nets

  4. MOVIES??!!!??? REALLY???? Where are the cliff notes???????? LOVE, LOVE, LOVE YOU BOTH, Doris

  5. Oh but I can relate to the lounge wear!!!!

  6. Love your writing , Kia, reminded me a bit of AA Milne. Which is why, I guess, I began this morning thinking of Pooh. Love Love Love the Pooh : "What day is it?" It's today," squeaked Piglet. My favorite day," said Pooh."

  7. Your LOTR analogy speaks to my inner Zep Geek. Here's the circular logic you'll need to rock the story in the context of one of their classic anthems: You ARE Frodo. The cancer, Sauron's realm. To end the evil realm, you must destroy the Ring by dropping it into the fires of Mount Doom - when Gollum bites it off your finger and falls into the fire - all before you can Ramble On. The Ring, or the "girl so fair," is the chemo, which you need, then need to rid yourself of, so you have to keep searching for it. I know, maybe a stretch... but it's Led Zeppelin, and it's powerful juju!!!

    Mine's a tale that can't be told,
    My freedom I hold dear;
    How years ago in days of old
    When magic filled the air,
    T'was in the darkest depths of Mordor
    I met a girl so fair.
    But Gollum, and the evil one crept up
    And slipped away with her.

    Remember, love + "positivity" + classic rock is a recipe for healing!