3/18/14

Ambien and Antibiotics: 2007

An excerpt.
--

  My tooth hurts on Wednesday and by Thursday I am in agony. I shove the pain underneath my pillow with the shirt I wore to bed and I get up and pull on my pants, half heartedly brush my hair, grimace into the mirror and I go to school.

By noon, my tooth has become a flashing light, a hazard sign on the side of the road.

I can’t chew, so I slide food down my throat. At lunch I choke on my salad and Brendan whacks me across the back in the cafeteria.

After awhile, I can’t ignore it so by Friday I am in the dentist’s chair, and on Saturday I am swollen but fine but I decide to miss Halloween because I cannot--will not--
drink for the fun. And though I have always thought of my Halloween costume as my chance to shine, I’m tired and I do not have the energy to create and drink and forget.

So I get on the train, heading to my parents in NJ from my college in the Bronx. I get pissed because I can’t find a cab and this is unfair and I am entitled to something being easy, I just want a cab. I just want a cab to take me home.

My dad picks me up and hands me the soup he knows that I like and I lay in my bed in New Jersey and watch movies and maybe the medicine will work.

But Sunday I wake up and my face is a wreck, all shapes and circles, all hard lines disappeared underneath this mask. My mom comes upstairs and says “shit” and we are back on the turnpike, I am in the passenger seat, slack and out of control. In the ER they call it edema. And because I am special and worthy, and because once at Children's Hospital in Philadelphia they called me the mystery child, They Are Confused.

And because I am entitled and young and susceptible, they rush my room and I do not complain when I get a bed in the wing for old people. My roommate is at least 80 and naked and there’s just so much awful about aging alone and this is not graceful.

The surgeon visits and he says “we need to go in and drain this”. My mother leaves the room because I’d rather be alone. The scalpel meets my skin and my gums bleed and I kick the sheets and I scream on the inside and I am told how tough I am.

I get back into my bed, wiping blood from my face and stubborn tears from my cheeks. I call the nurse for morphine, plug in my headphones and write so that I can remember this feeling, this pain that I will push underneath my pillow the second I get a moment alone.
On Monday, they free me. I go back to class on Tuesday, in Memorial Hall, I am rolling through the hallways, a smile on my face, playing for the cameras.

They all call, leaving messages on my phone, asking, wondering, caring. And because I'm fucked up, I don't return the calls. I don’t want to talk to anyone. I don’t want to tell them that it’s okay. I am tired of answering the same fucking questions. NO. I don’t feel well. And I don't feel like saying it again. I lay with my pain and I keep it for myself.

Before bed, I take the antibiotics for my infection and I take the hospital's parting gift, a bottle of Ambien. I take a hit of the joint my roommates pass around and I lie down, my brain lighting up in places, too young for this. But I cannot function right now without help. I am flailing. 

Literature and War is my first class today and I trudge downhill--when I say trudge, I mean trudge, because all of the time, there is snow on the ground. It feels like that. Like four feet, minimum and I have to get through nothing, the something that does not exist, just to get to class.

I know it’s from the pills but I cannot shake this blanket of exhaustion and I drink coffee and my hands shake. I try to take notes and I try to focus and usually I own this class, my hand perpetually in the air;  I know this shit, I know this book, I own, I own. But my tongue is heavy in my mouth and I imagine that I have suddenly gained a speech impediment and that’s my last clear thought before my eyes start to narrow.

It’s all I can do not to pass out but I fail and I see Mike look at me across the row, concerned, reaching. One word escapes my lips before I slip to the floor.

I wake up much later, back in my bed and I’m surprised to hear that I walked home myself that I said I was okay, that I only missed one class, only one class. I sleep more but I miss my friends and I force myself upstairs. We put on the DVR and catch up on Gossip Girl. I feel awake now, and not everything is shit, and we are laughing.
 --
Image via Lauren Modery

2/28/14

back to newyorkcity


It is the end of February. I am 28. I am not 22, the age I was when I started this blog. A few weeks ago, I was surprised to see I net more web traffic than ever before. I post here rarely; I'm not sure what to say that hasn't been said. Who am I now that I wasn't 6 years ago?
--
Scar tissue.
--
There's been organs lost and battles waged on the inside. There's a decline in health and a rise in self-awareness. I drink less. I do less. I swim more. I travel more. I dive headfirst into either everything or nothing.
--
This week I slept three straight days. My Jawbone UP band told me I took 324 steps yesterday. I think that was to the bathroom and back into bed. How pathetic! I write these updates and I look back and some of them are so similiar; I feel powerless, I try, I fail, I whine.
--
Movement.
--
On February 8th, I moved into an apartment in Greenpoint, Brooklyn. I haven't lived in the city since July 31, 2011. Nearly three years have passed since I called NY home. When I lived in California, I was certain I'd never go back to New York City. There was so much air in California. I had my Lost Days, the days where I slept, but it was with the windows open and the sunlight streaming in, fierce. It was beautiful and it was lonely and it was hard.

I had to make myself do things. I had to make friends.

Moving back to New York...that first week reminded me of moving to LA. I have plenty of friends in New York, but I hadn't connected with them, really connected with them, in some time. You can't just go back. Things have changed. People have changed. In New York, everything changes, and the city forgets you.

You forget the city too. You walk West when you mean to walk East. You transfer subway lines and end up going the wrong way. You learn about new ways to travel, a ferry that goes right across the East River...perhaps these things had existed in the 7 years I spent in New York, but I'm relearning them.

I'm relearning my friends, and my relationship to this town. I had a good first week back.

And then Claire visited, and I stayed with her and my new pal Aidan, and we had a great long weekend, snowed in on the Upper West Side.

My friends threw me a birthday toast, and I took the train home on the 17th to NJ to see my family.
--
I've been home in NJ for 10 days now, almost half of the month. I spent half of the month in NJ, napping with Sadie, napping with the dog...napping.

My friends and I spent last weekend in the Poconos, swilling cheap beer and shopping at Wal-Mart.

That's a lot of money to waste on not being somewhere, and I've come up with a thousand reasons I haven't gone back.

But mostly, it's hard to reintegrate. It's hard to admit that! And I have been so tired. Sleeping, managing an out-of-control diabetes, bronchitis, and mouth ulcers. I have been sick and I have wanted the comforts of my bed in NJ, my parents 100 feet across the yard, the dog asleep at my feet.

Maybe most people want the comforts of home. Maybe I'm not cutting myself a break. Maybe I don't push myself enough.
--
Tomorrow I'm getting on a train and going back. I feel a little bit better. The sores have receded and the cold and diabetes...well, I reckon they'll stay for sometime. I've made plans for the weekend and next week.

If I need to go home to NJ, I will.
--
There are different parts of me, and they all want different things. My brain wants my body to get its' shit together, and my body so does not want to do that. It's all "fuck you, brain." Stupid body.

And my heart. My heart belongs in two places, maybe three. And I'm strung out, hoping to touch them all. But I'll try. I'll run headfirst into this adventure, this year of 28.

What else is there to do?
--
Thanks for reading along the way.

kb

2/4/14

Six Years Out: World Cancer Day, 2014


I remember the moment my parents told me I had cancer. I remember the shock, and my boyfriend's arms around me. I remember crying, calling my friends. I remember how Rachel and Gen rushed over, tears in their eyes. Meghan and Erin's cracked voices over the phone. My cousins...my siblings...my parents' fear.

I don't really remember surgery. I remember checking in. I remember going home.

I remember the radioactive iodine treatment. The men in Haz-Mat suits, giving me a toxic pill to swallow as they stood the recommended amount of feet away, tape measure in hand. The walk behind my mother to her car.

I remember driving to New Jersey with my mom, who wasn't afraid to be near me, even though I was quite literally toxic. My friends visited through the bathroom door. I was isolated for a week. My dad bought me a TV. My siblings were scared.

--

Next month, I'll undergo a full-body scan to make sure nothing's left. 

My doctor said there's abnormal lymph nodes, so I'll get an ultrasound too.

--

These six years post-diagnosis have been the hardest of my life. Cancer doesn't end when treatment does; it's effects linger, especially if you are young when you are diagnosed. 

Young adult cancer survivors used to exist without acknowledgement. They still have the highest mortality rate out of all cancer populations, because they are often overlooked. To be young and vital and then suddenly sick is terrifying.

I remember the depression right after treatment. It was all a blur; I graduated from college 2 months after I was diagnosed. Everything was happening at once.

--

I can't imagine my life now without the friends and community that I've come to know through this terrible disease. I can't imagine a world without their friendship and support. It is the silver lining.

--

Cancer destroyed my body. Cancer provoked Type 1 Diabetes; last week, my doctor told me it was the trigger. It took a mild case of lupus and made it suddenly more severe. I have been so sick and so sad. I have been angry and depressed.

--

This week, I move to Brooklyn. I have been home for almost 18 months, recovering and then getting sick again. I've accepted another diagnosis. This month I turn 28 and I'm getting an insulin pump for my birthday.

I didn't live for so long; I slept. I call them the Lost Days. But as I look toward the end of my twenties, I don't want any more Lost Days.

I am not better, but I am okay with that. I am moving forward. I am healing, even if that means I'm not medically any better than I was a year and a half ago.

I have had so much support. My parents are amazing; my sister and my brother and cousins are my rock. My friends are steadfast and this community builds me up when I am lost. 

--

Let's support each other. Give whatever you can to fight cancer. It takes so much. It is not a gift, and we must defeat it. 

I recommend the American Cancer Society and First Descents. Too Young for Cancer is also a good organization for young adults battling this disease. Give toward metastatic breast cancer and Ewing's Sarcoma. Give toward melanoma, or Hodgkin's and thyroid and pancreatic. We need advances. We need them now.

Link to donate to First Descents is here: http://tfd.firstdescents.org/site/TR?px=1004761&fr_id=1060&pg=personal

--

Thank you all for inspiring me to keep on. Thank you for all your support these past six years.

I am so lucky. I am so grateful. 

I'll never forget the friends we lost and will lose. I'll always remember their fight and determination and I will call on that on days I am not up for living.

This is what it means to survive.

1/27/14

Dig In

A Day in the Year of Healing
I have been coughing all night. Before I slept, I texted Ashley to see what drugs I could mix with NyQuil. It turns out, not many. My ribs hurt and my body cracked and creaked. I'd slept all weekend, like my body was shoring up energy for the storm that is coming, the storm that sends out signals in between waves of coughs. Cough, tremble, inhale.
I slept for a good ten hours Sunday night, despite waking up at 4pm. I woke up and the dog was wild, licking my face, begging to go out and for food. I tried to ignore her and my bladder; here, I was unsuccessful. I fed her the banana I've been meaning to eat. Still, we were up early. Dogs are exhausting, and I don't even do all the stuff. 
My mom came back with Sadie in tow. I hadn't seen her in 12 days and she was happy to see me, though she grew happier with me as the day wore on. For lunch, I fed her broccoli and pasta and artichokes and spinach. She ate so much broccoli that I started humming a tune. Broccoli monster, Broccoli MONSTER!! I sang it at her and she started laughing. So hard I was worried she choke. Broccoli monster! I tried to take a video but she shakes her head at my camera now. She's 16 months old and she's starting to really interact. She listens to directions and brings me what I ask. She loves to play basketball, feed her baby doll Max, and climb up the stairs. Every age, I think it's the best. I'd like to capture her here for a little while, but she's already toddling off, leaving me behind in Gymboree class, in search of big kids and whatever toys they've got.

In between all the moments, I could not help but think of my friend Lauren. Her dad died yesterday. Her family has suffered two deaths in 14 months. A family of four, whittled down to two. You never want to believe that life is that precious, that fragile. We say it all the time: YOLO, hold on to this moment, live here now, but I know I often refuse to accept the fact that my family won't be whole forever. And it devastates me to see it happen to a family I love and care for. The whole thing reeks of unfairness, except isn't it just what life is? We live and then we die. But to lose a daughter and spouse in 14 months is still, still unfathomable. 
Sadie was wiped after Gymboree and Target and went down easy. Boom, lights out. I came up to the apartment to sleep but found I could not. There is so much I am failing at. I'm not taking it one day at a time. I'm not eating the fucking bone soup! I'm walking but not as long as I should. I'm getting up but only some days, the rest are spent asleep.
I'm trying to look at the big picture. It looks beautiful. Full of adventure and extra pages in a passport. It looks so full. I'm not tired, I'm not sick. Everything is a little bit easier. But I'm not entirely on my way there, no matter what I say. I keep thinking: I'll do better later, later. But later is stupid. Later is not now. Later will come and I will be here, the same. 
And I don't want that. I know life is this precious, this fleeting, this fragile. It's fast. It's toddling away from me.
What I guess I am saying is this:
It's time to dig in.

1/20/14

It's More Than A Feeling

Go with your gut. Trust your gut. Follow your gut. You'll know what to do.
--
I am in a time of transition, a time of openness and willingness. This is something I know and feel honestly, for the first time ever. And because I have ignored the suggestions for so long--from family, from friends, from readers of this here blog--I am consciously listening to what people say. And you all say a lot: 

Cut gluten. Cut carbs. Cut meat. Become a nudist! Meditate daily, go to yoga, try Pilates, walk, sing in the shower, eat flowers, don't eat flowers, jump on your bed, go meet the Pope...



MAN, the things I am now willing to try! If you'd told me a year ago that I'd have thrown out all my sugary crap food and abandoned bagels for...not bagels...I'd have laughed in your face. I'd have told you that it's not fair: I've given up so much, why do I have to give up more. I'd whine: Why can't I be like everyone else, just a little? Why can't I be irresponsible for a little bit longer?

But let's get real: I was irresponsible for long enough. I was frustrating for long enough. I had my shitty food and I had misery. I had my alcohol and I was a terrible version of myself.

So now I am open. Wide open to healers and acupuncture. To burning moxa on my skin. To cupping. To whatever Gwyneth Paltrow is selling. Pass me the fucking pipe, man, because I'm smoking it.

There are so many conflicting options, though. I reckon it'd be difficult to be a vegan and consume a paleo diet at the same time.

I brought this up with my therapist, after I broke down listening to another opinion.

Go with your gut, she told me. But I never really had a gut. It was fed with medication because I was sick at 10 months old. It got amped up on drugs and steroids and so my gut, or whatever knew what felt good and didn't, is, in some ways, lost to me. It has no diary to tell me what drugs worked or what didn't. It's exhausted and overdone.

I do know that the last time I felt good for an extended period of time, I lived in Los Angeles, right next to a mountain, with a trail I hiked every day for 32 days straight before I flew back East. I know the last time I felt clean, I was in a forest in Hawaii, hiking toward a cold waterfall. I was swimming in the ocean.

As much as I want to flee again to places where this is a daily possibility, I cannot. I've had three hospitalizations in three months. I have to build health here, because I have to accept that this is home. It doesn't have to be forever, but this apartment in the carriage house on my parents' property will always be home base. I need my family to help me and I need my niece to ground me.

Because there is still so much acceptance to work toward. There is still a gut to unclutter.

I know that I can continue to do nothing. I can lie here. I can say I’m recovering, but it’s not recovery if I’m just anticipating the next disaster to strike.

And so that is why I have started. That is why I'm in search of my gut, and cautiously toying with the idea of better. 

And I'm actually doing some of this crazy shit. 

Because It’s mid-January of this newest year and I’m sure now that if I don’t act, I will waste my life in this bed.

And that would be terrible, you know. Terrible to waste this life, any longer.

--

I'm already working with a team I am beginning to trust, but throw me your suggestions. Nothing can hurt. Tell me where you feel good. Tell me about apple cider vinegar. Show me your gut. Let's share our insides. Let's get better, together.

Thank you.

xo
kb

1/17/14

January 17th: The Healer



Today my mom and I walked around the city we both used to live in. And she met Chris, an Eastern medicine scholar who I've met with once before.

Chris is insanely smart but his ideas are radical, even though they come from thousands year-old medicine. And yet it makes more sense than anything I've ever heard. And I have heard it all. Drug names and surgeries and treatments since the time I could talk and listen. I know more about the immune system than premed students. But for all these years, I was hesitant to explore this other type of medicine.

I was afraid, afraid for another treatment to fail, afraid to lose myself in another attempt to get better. But I trust Chris. He's highly trained and young but so goddamn smart. He is humane, even when sticking needles in me and burning moxa on my belly button.

let him burn me and it didn’t hurt. I wasn't tense and I didn't scream. It was warm and relaxing and I felt a release, a sudden absence of something I cannot yet name.

I promised to dedicate the next six months to give my complete focus on getting better. To find the right mix between diet, natural healing and Western medicine. Because the drugs my doctors give me now are band-aids, and we've got to heal the root. No more chemo. No more drugs that only make me dependent on other, scarier drugs. 

My regular doctors are fine to tell me that my lifespan is shortened, that this and that will kill me and I am not okay with that. Maybe I was before, but I'm not anymore. Of course, I could get hit by a truck tomorrow, but it won't be a truck full of immunosuppressants and steroids, no, no.

I’m searching for healing. That is what this is about. I'm not drinking the Kool-Aid yet but my eyes and ears and are wide open. Even if this means eating bone soup, the recipe for which seems to be taken out of Hansel and Gretel.

I am practicing patience and I am hoping to find peace. And in that peace, joy.

1/13/14

A Letter to Friends and Family

Dear Family and Friends,

Happy New Year! Please hold still for a few minutes, while I bore you with why and how you should help a cause near and dear to my heart.

Ever since I became involved with First Descents--wait, what? What's First Descents? Hold onnnnn...

Read this first: 

FIRST DESCENTS (FD) offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle, bike and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same. During our programs, adult survivors and fighters are empowered through conquering legitimate outdoor challenges to push their limits and face their fears, and by doing so, they are able to regain the confidence and self-efficacy lost to cancer.

--
How I Became Involved

I first was told that I must go on an FD trip in the summer of 2011. By January 2012, I'd applied and been accepted to an amazing getaway: five night surf trip in the Outer Banks, where we woke up to a healthy breakfast and morning yoga on the beach. We surfed in an Nor'Easter and rocked out in the car to Call Me Maybe. (You can't judge us; we had cancer.) It was clear from the start that we were an amazingly close group; at the First Descents Gala in Beaver Creek in March of '13, we accepted an award for the best fundraising effort. We sent an entire group of 18 to 39 year olds to camp last sumer.

After you've completed your first challenge, you're invited to a second trip, FD2. You must take on a fundraising effort. There wasn't a limit to what you could raise, but thanks to my friend Hairband forcing me to run a half marathon in Denver with her, we raised over $2500.

Last summer, I was ready for a an even more extreme adventure. I chose to do my FD2 challenge last July white-water kayaking the North Fork river in Montana's National Glacier Park. I can't pretend I didn't want to quit half a dozen times; it was cold, I was sick, and oh, I had a broken arm and collarbone. But at night, as we ate dinner and chatted around the campfire about...BEARS, a conversation from which I may or may not have recovered from, I once again felt at home with these strangers. Strangers who were now my family. My cancer blood, if you will.

After you've participated in FD1 and FD2, you graduate into FDX, a trip that months of training and former trips with FD have prepared you for. You must also raise money for FDX and I believe that this cause is truly worthy. Not only are we giving back to FD, who has given us so much, we are helping to build homes and playgrounds for the destitute families who make up Southern Vietnam.

I fly into Saigon and then we get on a bike for FOUR days and cyle around the country. A COUNTRY THAT DOES NOT LOOK TINY ACCORDING TO GOOGLE MAPS. After we dismount our bikes, the second half of our work begins. We won't just be biking, we'll be building stuff, too! With my own tiny baby hands! Tiny baby hands that can barely hold a drink, let alone a MALLET. 

I think I can do it, and I want to give back. But I need a tiny bit of help. And here's where you guys come in. Because you're so lovely and beautiful and did you get a haircut? No? It's naturally that curly? Gorgeous. 

--
So Why Support FD Out Of All The Other Organizations You Work With? Dammit, Bergin!

Fundraising makes First Descents possible. Not just for me (baby buys her own plane ticket) but for other young adult cancer fighters.

I fundraise for First Descents because unlike any other lupus, cancer or diabetes organizations or support groups, it has absolutely been the best fit for me. It has changed my body and soul. It has saved me. It's given me hope and ownership of my body. It's helped me, with my discombulated head, accept the body that I have always hated and resented.

(Look, I even drew a self-portrait. Double-chin unfortunately included.)

By giving to FD, we are changing the life of a young person affected by cancer. A young adult, who likely doesn't know any other people with cancer his age.

A lot of the reason that FD targets young adults is because young adult cancer patients are quite often overlooked. They are largely without insurance, so by the time they finally go to the doctor for that weird ache, cancer has blossomed. 

And there are few places they can turn to. Sure, there is an abundance of support for women with breast cancer, children with cancer, and the elderly. But there is a shocking lack of support for 18 to 39 year olds, a population with depressing statistics: there's been little increase in survivorship rates. And it's even worse for young men, who suddenly have to face fertility and libido problems at 23 years old.

My cancer peeps are dying young and they are dying quickly. I've lost friends to this wretched disease, and the fact that I will lose more absolutely shreds me. 

While FD will not cure this disease, it will change the fighter for the better. I can say this with absolute certainty that it has worked for me. And I have seen it in fellow campers who have become family to me.

I've set my goal to raise $1500 this year, which will completely cover one cancer camper and their flights to whichever destination they choose.

--
The Challenge Besides The Actual Crazy Ass Challenge:

In preparation for a bike trip around a freakin' country, I will bike indoors, perhaps staring a picture of Brangelina with theirs arms outstreched, waiting for me in Vietnam where we will adopt our son, Wolfgang Jolie-Pitt-Berg (the -in is a bit much, no?). 

I've challenged myself to start doing 30 minutes on the bike a day, as soon as I get out of the hospital. (Yes, I'm writing this from a hospital bed.)

This is a new year, a year for hope, and going to Vietnam is a huge leap of faith for me. It is scary, it is far, and I'm not even sure if they sell Froot Loops there. Also, I'm terrified of large insects and land mines, so there's that.

But I am excited to feel charged up about something, after years of depression and pain. This anticipation and joy has propelled me to vow to overcome the challenges 2014 has already given to me.
--
Where I Say Thank You and Mean It

Thank you for your support. If you donate, please email me your address and I will send you something special for your support. The something special will likely be a #selfie, so you know, you may want to opt-out of that. But donations will come with hugs. I'm allergic to deodorant so, again, at your own risk. Oh! You can lock me in a cage and wave from there.

The link to donate is HERE: http://tfd.firstdescents.org/site/TR?px=1004761&fr_id=1060&pg=personal

Thank you. Thank you so much. For this, sure. But for everything else...there's no amount of smelly hugs that could thank you enough.


All of my love,
Kelly Bergin