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Tuesday, February 26, 2013

It's Toasted!

Lately I have been having this weird feeling. I've been wishing I smoked so I'd have something to do when I'm angry. When I'm pacing around and muttering to myself, that kind of thing.

Obviously, I'm not going to take up cigarettes -- I don't want to get cancer! Um, you know, again.

Sunday, February 24, 2013

A list of things I hate (in no particular order)

That the Yeah Yeah Yeahs are not coming to New York on their next tour

Bradley Cooper

Radio silence

Fucking cancer

Inspirational quotations

Headphones that don't go loud enough

People who stare at me

...and most other things.

Monday, February 18, 2013

1, 2, 3, 4, 5, 6, 7, 8, 9, or 10

Ever since my surgery in December, I haven't had proper use of my left arm. Radiation has made this even worse, so in January I started seeing a physical therapist.

At our first session she had me do some exercises, like lifting my arm, reaching forward, and other embarrassingly easy things. She watched me as I struggled through 30 arm raises, biting my lip,  and willing my shaking muscles to steady themselves. When I finished, proud that I had done all of them, she said, "Okay. That isn't how we're going to do this." She told me not to push through the pain. "The time for that will come later. Right now I want you to just do what's comfortable. The goal is for you to wake up in a couple of months with full use of your arm, and feel like you didn't do anything to get there."

It made sense, and I said okay. But then I realized that I don't know how to not push myself until it hurts. If something hurts, that means its working. Like when I was thirteen and would rub astringent on my face until the skin buzzed with pain.

Hurting means you're alive, if nothing else.

Each time I visit the doctor, I'm asked if I'm in any pain, and if so to rank it on a scale of 1 - 10. I hate this.

Pain only exists as relative to other pain. When they ask to rate your pain, what do they mean exactly? Is 10 the worst pain you've ever felt, or the worst you can imagine feeling? I wish someone would assign them something, like 1 is a paper cut, 10 is being eaten alive.

I experienced my own personal 10 last week, though probably it was officially a 7?

It was Valentine's Day. My chest was bright pink in honor of the holiday. My skin was blistered from radiation, and doing what they call "peeling," although it's not really that AT ALL. When they said my skin would peel, I secretly thought "Nice!" because, disgustingly, I've always loved peeling off my dead skin after a sunburn. But this is actually more like melting. Basically this:

Anyway, I was dealing with a moderate amount of discomfort. I took a shower, and something about the hot water must have really pissed off my nerves because holy shit, it felt like I was being gored in the armpit by a flaming rhinoceros horn.

I cried, but found that the heaving of my chest made the pain worse, so I held it in. I had heavy duty painkillers left over from my surgeries, but in my delirium I refused them, afraid of side effects. I tried any number of distractions, including forcing Matt to read aloud The Love Song of J. Alfred Prufock while I shuddered under the covers. (???)

But nothing really works like a good opioid. After resisting mightily, I gave in to the call of Vicodin, and was hushed to sleep within about 15 minutes.

I guess maybe I relented because I remembered what the physical therapist said: The time for pushing through the pain will come later.

Don't I know it.

Saturday, February 9, 2013

The Fallout

Yesterday was the last day of radiation, and the end of the most intense part of my treatment.  I will continue for receive Herceptin infusions at the chemo place every three weeks until September, and still have a few, maybe several, reconstructive surgeries in my future.

But mostly, as of yesterday, I am done. I had trouble sleeping on Thursday night -- strangely, I was nervous to end radiation. You'd think I'd be jumping for joy, but actually I felt scared. For the last six weeks, months really, I've been watched, seeing doctors on an average of two times per week, getting blood drawn, lungs listened to, lymph nodes squeezed. I've taken off my shirt for so many attendings, residents, and interns that I could star in my own video series: Emilys Gone Wild.

And now, that's ended. What will I do with no one asking me to rank my pain on a scale of 1 - 10?

My radiation oncologist talked about this. "It can be hard after so much treatment," he said. "It feels like we're just sending you off. Some people have anxiety about it. You can always call or see me. You can come buy every day if it makes you feel better."

Aw. Then he told me I'm a tough mothafucka and I should consider myself cured, and we bumped fists. (Only partially true.)

It's not just the fears of recurrence kept at bay by so many doctor visits. I'm scared too because now that my body can begin to heal, and my mind can begin to think about things other than scheduling appointments and taking pills, I know that now I will begin the long task of processing this emotionally. Fun!

Our brains have this amazing mechanism that prevents us from really grasping a situation when we're in the thick of it. I know, from my experience with Matt's disease, that it will take years for all the anger, sadness, and fear to work themselves free from my heart. If they ever do.

It has been hard already, and for sure, I had those not getting out of bed days. But I was distracted enough with physical discomfort, and the sheer minutiae of cancer not to really have to look too hard at the way things have changed in the last six months.

Luckily, it will be gradual. Like I said, I'll still see my onc every three weeks for Herceptin. I started seeing a physical therapist twice a week, to regain movement and strength in my arm. And I'm just getting started when it comes to reconstruction. I will remain very much under medical care for the foreseeable future. Just less than I'm used to.

So with that in mind, I would rank my current distress at about a three.

But don't put too much stock in that assessment. It changes by the hour.

Friday, February 8, 2013


The final installment.

I will probably never be the same after radiation...or seeing this music video.

And 27

Last radiation today, and for some reason I couldn't think of anything to draw but this.

Wednesday, February 6, 2013

Uh, yeah

It's this kind of day.


Me getting radiation. After 25 times, I have learned how to lie down on the table and be perfectly lined up with the laser guides.* The other 24 times, the techs have had to position me by rolling or sliding my body on the table.

* I think the term "laser guides" makes me sound completely insane...but they're real, I swear!!


I think that technically, this guy is the original rumpshaker, but I'll let it slide, Blackstreet.

Tuesday, February 5, 2013


I guess you can blame this on chemo brain and a long wait at the radiation place...

Friday, February 1, 2013


Farewell to my bolus...thanks for the burns and blisters!

Next week I start a higher dose of radiation, so to spare my skin we are kicking the bolus to the curb.