A Light-Hearted Dispatch from Hoppy, My Newly Named Hospital Bed

I've officially spent 8 days here: Wednesday. Thursday, Friday, Saturday, Sunday, Monday, Tuesday, Wednesday. Today is Thursday and I'm for another night.

If you remind me of how beautiful those days are, I will cut you, and you'll be reluctant to free me from anyplace, anytime.

This morning was interesting! I was going to get to go home, despite the nonstop PukeFest2014, but then my blood sugar tested at 545.

In layman's turns, my pancreas is Jack at the end of Titanic. Occasionally spurting out some signs of life, but mostly just frozen, half-dead and weighing me (here, I am Kate Winslet. Duh.) down. 

I've got no love for my pancreas. Float away, already!

So I'm here another night, having been tested, scanned, radiated and stuck more times than I can count. Oh wait yes I can it's SEVENTEEN. These baby hands may charm and freak you out, but they are shit when it comes to pushing IV drugs. DUMB BABY HANDS Y U SO SMALL?

My parents have been here regularly, cleaning me up when I puke, changing my lines and helping with everything because, you know..."I've been a nurse for 35 years!"

And she does help. And I'm grateful for her and Dad, who's constantly dropping in even though I am a cranky, drugged, sick, stinky millennial, tweeting my miseries into the great big Cloud of Embarassment. He's here, and so are Kristie and Greg, and many more friends and family have called, and wrote me and made me feel so much less alone. Sorry I won't let you visit, but I look rabid.

My team of specialists (basically a full football team) has figured out what's going on and though I don't care to specify at this time, I will admit to saying this. IT SUCKS. My body is an automated Berg-killing machine! Luckily, everything looks benign, but we must kick some gastric, pancreatic, neurological, psychological, rheumatologica ass before I attempt to strike out on my own again.

California will be there, unless it falls into the sea (sooorrrryyy) and I will be there soon. I am aiming for November. 

But more than that, I hope to be managed and healed and alive to see Sadie turn 2 in two weeks and 21 nineteen years from now. Baby's first lemon drop shots! Her realization that Auntie Kels is a cougar and she should run to another bar! I can't wait!

Kids, I don't live a day without pain. But that's not gonna stop me living. It's a big world. I've only just begun.

Thank you for the support and gifts and love. I am humbled and emboldened by each of you.

Love and drugs,
Your Kelly

PS: Many of you have asked how to help: fundraising for First Descents would be the ultimate gift. They are my cancer family and the best thing I have ever been a part of: Dotcom Fundraises for Important Cause

Thank you. I love you all madly.


hospital life

wed/thur/fri/sat/sun/mon. 6 nights here and I don't think I am leaving yet. I'm so cranky and I won't let anyone in, to see me or otherwise.

six nights means I'm used to the smells, the noise, the unending clash of bells and whistles. the wake-ups, double now that my blood sugar needs to be checked. so midnight. two am. four am. and every two hours onward.

I am allowing the drugs to block this out but the haze has to lift (and it does, an hour after the IV push). the memories will resurface and bind themselves to me, scar tissue on my fingers and belly and arms. tiny scars. a broken summer.

on Friday I am supposed to move to Los Angeles. this is no longer. I have realized it would be foolish to go in the midst of what my doctor dubbed "a bad, bad time." I don't know if I have given up or accepted the reality that no doctor thinks it's a wise choice for me to travel right now, let alone deal with the stress of a cross country move.

I had been so looking forward to a restart but I have to tie my laces before I run. 

soon I'll stop running fevers and throwing up. I'll stop with these allergic reactions. and soon they'll figure out why my diabetes isn't responding to insulin the right way. soon they'll diagnose me with something else and put me on a new regime.

until then, I am here.


But, like, HOW are you going to move to California?

I've been back in New Jersey since mid-June, and if you follow me on Instagram or Facebook, you know it's been a tough couple months.

In California, I felt a change start to occur. I was outside more, and I felt more alive. Each emotion was felt keenly and I wasn't burying my head in pillows and sleeping away the day when I felt the slightest twinge of anxiety. My depression was starting to melt. I had bad days but they were fewer, because I was in a place I truly love. I left energized, promising I'd continue to work on myself here.

But I didn't. I fell back into bad habits.

CA was about working to make me better, a step at a time. When I felt sick, I let myself be okay about feeling shitty, because I knew it was hard getting used to a "normal" schedule and life again, in a notso normal body. (Sadly to say, I don't JUST suffer from a disease called laziness.)

When I got home, my will to reenergize collapsed. I am still working on finding out why, but I've got a theory.

In NJ, I have my cushion. I have my parents and brother as caretakers, to help me and cook for me and do my laundry. I took advantage of this, thinking it would help me achieve my goal to return to CA refreshed and well.

But this backfired. Since I was taking no responsibility for my health, I let it fall apart again. All the work my body had done in CA was practically destroyed.

Here, I have Sadie three days a week and another nanny job 20 minutes away. When I wasn't focusing on the kids, I was sleeping and eating poorly. I let myself get rundown and because I was tired, I let myself become lazy. I kept thinking: "I'll be better in LA."

In CA, I was surrounded by two little girls nearly 24/7. It was exhausting, but it was awesome, because they are so fun and cute. Because I needed to be OK to care for them, I treated myself better.

Here, I wasn't up or active enough.  I do a lot of things with Sadie and after babysitting, I get into bed. I stopped taking my nightly walks and instead wasted brain cells on reruns of ER.

I developed more pain and a lot more trouble with my blood sugar. And then, two weeks ago, I had scans and blood work done. The results scared me.

The ultrasound showed fatty deposits in my liver and inflammation and gallstones in my gallbladder. I told close friends this information without really bothering to research or explain it. It scared me and it scared the ones close to me.

My plan to move to CA was crashing, and fast.

Until this week, when I did some research, talked to friends who'd been through this and leaned on the support of my Type 1 Diabetes group. I also talked to my doctor. And this is what I learned:

The gallstones I have cause upset stomachs and can eventually cause blockage, which would lead to immediate surgery. But mine are quite small and won't need surgery if I don't want it. And I'm not going to have my gallbladder removed to resolve indigestion and nausea, my major symptoms; people have told me surgery made them worse. Most older people in their 50-60s have them, and they walk around with them for years. I can get surgery if I want, but I am going to treat it with diet and see how I do. Eventually I'll need surgery, but hopefully that's a long way off.

The same treatment goes for these fatty deposits in my liver. It's called Non-Alcholic Fatty Liver and it is a complication of my diabetes. HOLY SHIT, I thought. I freaked out for a week over this, thinking that my liver was failing and I'd need a transplant asap. But I had blood work done, and my liver function tests are completely normal. And I learned that fatty deposits in the liver are completely reversible with better controlled diabetes. 

The news I got was still crappy. And I had a huge decision to make. I had two options: square away my health issues here with my cushion, or say screw it and go to LA*.

I am choosing the latter. But with a big f-ing asterisk.

*Before I go to LA, I will be put on a continuous glucose monitor. This device, called a CGM, checks your blood sugar every minute. It knows when you're in range or when you are too high or low. When I'm too high, my liver suffers. I get terrible headaches. I sleep constantly.

When I am low, I am wobbly and unsure. I also suffer headaches and dizziness. It is dangerous and can be life-threatening. And these lows were a major reason I was going to stay in NJ. Because I didn't think I could take care of myself if I were suffering from these lows. 

But with the CGM, I won't ever have a scary low. I'll be alerted by alarm when I am too high or low. This will help put my diabetes back under control. It will reverse any liver damage. It will alleviate my anxiety. It will plug me back into life. It'll ensure that I can take care of myself and others.

When it comes down to it, I can't live here with my cushion forever. I love my family and niece and I love home but I want to have a life again. It's time for me to permanently move to California.

I can't do this without support, but I have my cousin and friends in LA.

And I can't do it without doctors, which is why I have an appointment with a nationally ranked diabetes doctor three days after I fly in. And that juicer I bought and have been using? It's coming. So is my bike. (And my helmet because c'mon.)

This is a big step for me. It's not going to be easy. Because of my health, nothing will ever be easy. But I've put bolts in this plan. This plan has insurance. This plan has a foundation stronger than any of my other plans have ever had before.

I am emboldened. I am fucking ready.


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."


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.


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.