And Tell Me, What Have You Learned?

Oh, 2012. You were full of surprise, from the first days of January when my sister announced she was pregnant, to the middle of September when my doctors told me I was staying in New Jersey. You surprised me with love, and sickness, and First Descents and a sense of community I've never known before.

You were good. You were rotten. You were new.

This year, I learned...

1) Patience. How to wait. How to lie here and let the pain take me, let it surround me, let it take over. How sometimes you cannot fight it. How you must let it be.

2) Friendship. I have not been a very good friend to some; I have been a great friend to others. When my friend Lauren died, I learned that there is always more you can do as a friend, and to do those things before it's too late. This year,I am learning not to take old friendships for granted; that they, too, need attention. I am remembering friendships within family are so vital to who I am and how I was built.

I am learning that anything worth a damn requires time and attention.

3) Movement. This year I took up running and hiking. I ran up mountains and down valleys in California. I felt my body move in ways it hasn't in years. And though I have been benched since the end of September, I haven't forgotten the value in movement. In owning your body. For me, this is an especially important thing. I often feel I have no control over my body. Exercise has taught me that is not true. And it is a valuable lesson.

4) Love. I feel like my heart got cracked open this year when my niece was born. There is no love like it. And then there's Joe. Who I didn't see coming. Who I didn't know I wanted until he was there and we were together and laughing on his couch.

5) Breath. This sounds new age-y and unlike KPB (bitch likes her Xanax) but this year I began practicing guided meditation and it has aided everything from my old tendency to drink my pain away to random moments of stress. When I forget to breathe, I forget myself.

This has been a happy, hard year. A year for lessons and for love and for reevaluating what's important.

I wish you all a happy 2013! Thanks for continuing to read and come along with me on this journey.




A Health Update

In September, it was decided that the plan was to stay in New Jersey, rest,  get a new set of doctors and figure out a comprehensive plan. I was put on a low dose chemo and  the ultimate goal was to get off the prednisone.

Two weeks ago, we lowered my prednisone dose to 5 mg, down from 30 in September. With prednisone, I don't get mouth sores. 

Without the sores, life seems manageable; although I am always in pain, I am able to be present.

When my mouth is full of ulcers, I cannot talk, breathe or eat without that buzz–that deafening roar–eclipsing my moments, shielding me from living in the present.

Pain takes away what I work the hardest on: being truly present to experience each moment of my life, good, sad and painful. I believe that paying attention is crucial to cultivating good relationships, to enjoying life, to checking bad behavior. It is hard to do without pain.

It is impossible to do in this type of pain.

The sores are back. They have been back since Monday. When Joe wakes up, he will see many text messages from me, all complaints, all pleas, all apologies for complaining. He will tell me he's here for me, he will ask what he can do.

He can't do anything. And I feel like I am robbing him of having a fun girlfriend when I am down like this.

The treatment is not working. I know this, because the sores are back. I know this because the sores are just a symptom of the disease gone awry.

I am afraid that we are back to square one after nearly 4 months and I am terrified. I have given up an entire life in California for this.

I want to be better. I just want to be better.

I just want to feel okay.


three oh seven am, friday.

i wake up with my body already in motion. my leg is kicking the sheets and a loud feeling– a buzz– has overtaken my body.

the buzz is the pain.

inside my mouth, raw ulcers coat the top of my lips, the side of my tongue, the roof of my mouth, the inner cheek. 

a cold stuffs my nose so i breathe through my mouth, and the air irritates the open spaces, just enough to jolt me wide awake.

i don't know if i was asleep when i began the "fuuuuuck' but i am awake as the syllable stretches to that final 'k'. i am out of bed and in the bathroom with the magic mouthwash, a lidocaine mix that will temporarily coat this mess.

i count the hours since my last painkiller. it is not time to take another, so i will wait it out. 

yesterday Joe shook me awake because i was crying in my sleep. my cheek was hot with tears and salty as he kissed it, as he pleaded with me to tell him a way he could help.

but there are no ways, and tonight i am alone. tonight i am feeling all of it, the physical and the emotional. there is such a large loneliness in feeling something so large alone.

it is anger, what i feel. it is a sigh. it is resignation. it is knowing that i will never know a life without pain and it is self pity.

it is me saying "fuuuuuck" over and over again until i somehow find sense in all of this, a narrative. i must be feeling this for some reason.

i need to be feeling this for a reason.

for any reason. for any reason at all.