Why Tattoos Matter to Me

When strangers ask me why I got this paper airplane tattoo on my forearm, I weakly reply that I've always wanted a tattoo in this spot. I don't tell them that this is where I typically have an intravenous line put in. I don't say that it's where the bruises first show up, the gashes from a blown line, the rash from a new allergy.

So much of recovery from an illness–especially ones that dramatically change your appearance, like cancer–is learning to accept your body as it is now, functioning and alive. It may continue to change with new treatments and surgeries, but the never-ending work toward body image redemption is an essential part of recovery.

I love having scars: they're proof of a battle fought and if you're looking at it, a battle won, if only temporarily. They are something to point to, something to indicate survival. The red slash across my throat says "this marks the spot where the cancer was removed," and I like being able to tilt my head up and say "here," when I'm asked where my cancer was located.

This week, I'm covered in bruises and marks, and my face is red and bloated from high doses of prednisone. My legs are a battlefield of tiny pink injection spots and the bruises that follow. I feel alien to myself, and frustrated that I can't control what's happening to me. 

I can cut my hair, dye it black, and pick what I wear, but I can't fix the terror on the inside invading my skin, blurring the hard lines of my face. This is ugly, and no cool scar is going to change that.

This leads me to reclaim parts of my body that have been lost. This tattoo, as silly as I may find it now, is always commented on by nurses looking for a viable vein. It's mine; a drawing made by someone I paid to burn on me, on Haight Street in San Francisco, on a day when I felt wholly in control of my body and my self.

Tattoos are a choice, a strong lasting expression. I can't think of another way to better assert what little power I have over my own body. It is here, forever, a prettier parallel to the scars on my insides.

prednisone, my personal al-qaeda

i got out of bed today (Thursday) at 11 and lie there, knowing i could not get up.

but i had to babysit, and there wasn't another option. either i'd be picking up the kid or no one would.

i got in the car and got a coffee and donuts for the kids. there's three of them. so i got six donuts. it was cheaper. (no. i wanted a donut because i was hungry so i ate one, the kids ate 3, and then i ate one before bed.)

bad. i know better. i was hungry and deprived of what i wanted which was sugar and to feel nothing.

the day was productive. i shopped. i saw ashley at target. i gasped aloud. i spent too much money.

i haven't gotten tired yet. this scares me. i am out of breath.

it's the prednisone. it makes me so goddamned manic.

all i did was clean when i got home. the bathroom. my bedroom and the living room. i organized everything. i cleared out sadie's old clothes and threw a bunch of old greeting cards away.

i could not throw away the cards i was sent by friends who are now dead. they stay in the box.

my friend lauren died a year and a half ago. the last time i saw her, she gave me her bottle of Dialudid as a parting gift. we joked about it and laughed. i still have the bottle in my bedside table. the pills are long gone.

i am exhausted but sleepless. when i close my eyes and meditate, the prednisone barges in. i hear noises.

i think of the way our voices carry through an empty gymnaisum. i remember summers spent in gyms, playing ball.

i hear the tight tension that unfurls from a mother as she unloads the dishwasher. it is not my mother, nor is it my kitchen. it's just what i hear when i am trying to empty my brain.

they disturb me. so i put the light on and i look at dumb Tinder and i do this.

nothing is scarier than prednisone. nothing makes me feel less like me. the drug is a terrorist.

tomorrow. sadie. maybe the ocean.

still rambling.

still in search of sleep.

still. goodnight.

underneath it all

It's hard to imagine.

Being there.

Being where I should belong. August. California.

Right now it's a hail storm on the inside.

It's a nonstop "whatthefuck" fest in my body.

Everything is a chain reaction. A pinball machine. And the lights flare and the bells ding and I am sore and down on quarters.

I'm finally in bed. I haven't slept more than 2 hours at a time in days. I wake up yelling, my face stuck to the pillow, everything kicked off my bed in a thrash of pain.

I am the opposite of sexy and mysterious. I am a vulnerable shell right now. I won't tell any Tinder dates my last name.

Shit. They'll probably have to find out. Maybe next week I'll be okay to be me again.

The medicines have me bouncing. I'm up all day with Sadie, she barely sleeps, she's feverish. I'm splitting a beer with Ashley as we watch Sadie in her baby pool. I'm swimming next door, head under water, the only quiet I can ever find has been underwater.

I'm here. Back in the apartment. I take the medicine. The reaction occurs. The marble drops and the bad metaphors churn themselves out. Benadryl. Shit. It's 5:30 on Wednesday and the doctors say "come back."

--

Note:

I'm going to keep this all here. The unedited messy, druggy, hazy ramblings. They are stock photos. I will zoom in later to find more.

Love,

kelly

TRAUMA: LIFE IN THE ER (a true story)

Last week, when I was in California, I was talking to Claire about what it'd be like when I got home. I knew it was going to be stressful, just transitioning back into my family household. I knew it might stress me out that my brother would be back; just one more person to observe me and have an opinion about how I was living my life. But there were other factors, other dramas that I won't get into here for privacy's sake. Let's just say that I was not eager to return.

But, oh, how I needed to see Sadie. And my sister and friends and yes, even the crazy stressful family.

I got home and fell into routine, which had improved in LA. In California, I ate meals instead of snacks. I didn't drink sugary substances (aside from wine) and I rarely looked for candy or Chips Ahoy to feed my impulse. I carb-counted before every meal and dosed correctly most of the time. (Type 1 can be unpredictable. It can also be managed.)

My blood glucose was the best it's been in the nearly two years of taking insulin. My target number is 150 and I was close to that, hovering around 175. My doctor was proud.

Upon exiting the airport, I felt the old familiar sores begin to rise in my mouth. I had a batch in California, which forced me onto prednisone and made my numbers inch up. But it was nothing compared to the numbers my glucose meter ran early this week, when my doctor diagnosed me with two infections, multiple sores, and a sore throat and cold. I was on antibiotics again, and a higher dose of prednisone, and an antifungal. 

My numbers soared. I saw my first 300 in over a month and I realized just how heavy and terrible I feel when my sugar is that high. I had been so used to it for so long. 

When I hit 500, I want to stop breathing. I wanted to kill everyone in my sight, because they all seemed to be blaming it on me.

"Jeez, why are you just laying there? Come into the sun, get fresh air." Like I can move when maple syrup has replaced normal blood.

"Eat some salad." I literally ate half a pancake and four nuggets yesterday. These numbers had nothing to do with my eating.

"Silence." From everyone I reached out to who couldn't handle my weight this week. Which I understand. But still feels shitty when you're in the ER alone.

"You'll be fine at home." versus the doctors urging me to come into the ER.

Which is where I was last night. Alone, and in brutal fucking pain, and angry because the steroids had released their toxins into my body. And I couldn't relax or think straight.

So when I finally go discharged at midnight, and tried to eat, and realized someone had coated my precious mac and cheese with HOT SAUCE, which nearly killed me, which hurt so bad I dry-heaved...I blew up. I stormed into the house and grabbed ice cream. And my dad yelled at me that I was loud and he was stressed out. I had just spent 7 hours in an ER and I was on so much steroids, the Hulk would be a fitting description of my anger and flame.

It seems to be that while I might be a joy and blessing to my family and friends, I am also a huge fucking burden. I flip out and I try to move on and I push myself and I ruin things. I ruin family vacations. I am a huge fucking burden. And it seems everyone is tired of me. Me, you, them. It has been a really long 6 years since cancer. And it has fucking sucked. And while it sucked before that, nothing has reallly sucked as badly as the post-cancer years.

And I am never going to get over this. I can only move toward acceptance, but that's hard to think of when you're in the shit, just hoping to avoid a prolonged hosptial stay with a dying elderly woman as your roommate.

This is never going to change, this having of the diseases. They are with me until death. And in moments like this, I cling to the idea that death could be soon. That my suffering will be abolished, and I will devastate and relieve you all with my absence. Some days I think of others who have died, who have died with grace and beauty, and think I am not like them. I am angry. I am messy. I throw up a lot. I am always running a fever or a sinus infection. I hurt and It is not fucking pretty. I am an asshole. I am amazing when I'm not, though. But I am still a shitty person sometimes, just as everyone is a shitty person sometimes.

And that's OK.

This was another setback in my year of healing. I was so good in California, though. I wasn't perfect but I was better. 

So. Here's to the summer being more like my month in LA than this past hellish week.

Thank you for being here. Thank you for allowing me to be honest. Thanks for reading my unedited rambling.

I love you all, for who you are, for how self-aware you are, for your tips and your silence, for your acceptance and encouragement.

Thank you.

california

Two years ago today, I shot this on my iPhone. It was the night before I left Los Angeles. I was sure I'd be back in September, after Kristie had given birth. But then I fell in love. And I stayed. I went back for weeks at a time, each leaving me wishing I could be back for longer.

But the undeniable truth was that my health was bad, and I let  myself be trapped by it. For two years, I traveled and recuperated and engaged in meaningful relationships. I watched Sadie come into the world and I had my heart broken. For two years, I have longed to come back.

I leave LA on Tuesday. I have been here for three weeks and on the road for four. It's the longest I've ever been away from Sadie, and I miss her. The first week away from her, I cried because I missed her so much. I was homesick for my bed, my dog. Every time I had a sore or fever, I wished to be home.

I haven't been healed out here. I'm eating better, so my diabetes seems a little bit more under control. But I can still dose correctly and eat salads and my number will be 300. It's okay, though. I'm pushing through. I don't seem to do that anywhere else.

The sun is relentless. Today is the first cloudy day in weeks and I see how the weather affects us, how of changes our moods, how it makes my knees swell.

I could've booked a one way, and I almost did. But I intend to return. I will, in late August. As the summer begins to set in New Jersey, I will chase it all the way back to Los Angeles.

I don't know what I'm doing, exactly. But this feels right for now. And all I can really do is to hold that feeling close to me, examine it, and let it lead me to where I need to be.