Sunday, October 16, 2011

A Curse

At some point in this journey it seemed cancer was a gift in a twisted way. To help me see things clearly, to help me get perspective, to see what really matters...everything was going to be ok and I was going to be afforded a second chance.
Not anymore. I had a major surgery to remove whatever the doctors could find in my body that didn't belong. Several weeks later I'm still in the hospital recovering. The surgery was successful but who knows when the cancer might come back.
Being in the hospital has turned into torture, tubes coming and going left and right. I haven't eaten in weeks waiting for my body to wake up from the shock of surgery. The cancer has finally affected my brain.
Depressed, sad and hopeless I'm now on antidepressants, anti anxiety and sleeping medication as my mind is driving me crazy. Being held prisoner in a sterile cell watching everyone's life continue and while I'm trapped in a nightmare I can't escape. When will it end???

Leslie and Florence

Gorgeous voices and very different styles. Both equally stunning.

Sunday, September 25, 2011

Fear Resection

Facing major surgery this week. To once again try and destroy the cancer in my body that refuses to die. It's coming down to the end. I can feel it. Tuesday the doctors will cut out more of my internal organ to try and eliminate the tumors that are left. A whipple and a retroperitoneal resection.
In the interim, time is distorted by strong opiates that in an effort to eliminate physical pain serve also to displace me in a space shared by no one else. A space occupied by fear, hopelessness, despair, sorrow and exhaustion.
I'm 30 years old and I'm terrified that I might die of cancer, that I might die of complications from these procedures, that I might live the rest of my life terrified of dying by way of cancer, as it's not an easy death.
Not much more to say at the moment. Next time I return to this blog a new diagnosis will have been given; en extended lease or perhaps a notice of eviction.
What I wouldn't give to go back to a carefree existence right now? Where I felt young, healthy, attractive and to some degree invincible.
Those were the days.

Monday, August 29, 2011

Passenger and Pilot

A couple of my dear friends are in this band called Passenger and Pilot. Beautiful instrumentals and voices. They will be at Viracocha this Tuesday night. Come check them out!

Saturday, August 27, 2011

She Fancy

You wouldn't know it by this picture but this gal has been through some rough times. It's ok. She still enjoys a nice glass of wine while dining out in the city!

Friday, August 26, 2011

Tuesday, August 23, 2011

Dirty Beaches

This weekend I had the pleasure to visit the Clift Hotel with my friends to go see one man band Dirty Beaches. It was a great show, awesome guy to see live and a total hottie! As my friend Rebecca describes him, "a japanese James Dean with a voice like Leonard Cohen".!

Pictures courtesy of Alanna Hale.

Music on Valencia St.

Thursday, August 18, 2011

Wash Away

Sometimes you just wanna get washed away, never to come back.

11 Wash Away (Reprise) by Joe Purdy by mullencourtney144

Sunday, August 14, 2011

Careful What You Say

First let's cover what NOT to say.

You've lost so much weight. You look fantastic!
Thanks for noticing! My doctor says I'm malnourished.

You're strong and I know you can beat this.
Are you going to be disappointed in me if I die?

I read that kelp/almonds/asparagus have magical anti-cancer properties.
You should definitely eat some, then.

I know what you're going through.
Your grandfather's colostomy bag does not make you an expert on my medical situation. Unless you've been as sick as I have, you most certainly DO NOT know what it's like.

That reminds me of when my dog/cat/gerbil had a tumor on her leg.
I'm sure that was heartbreaking for you.

God doesn't give us more than we can handle.
Define "handle."

OMG, I have/had cancer too! Let's be best friends.
Please stop weeping on my neck.

I know you don't want to talk about it, but I really need to.
Get a therapist.

Cancer rates go up the less you exercise.
You're right. It's my fault I got cancer.

I am so impressed by how fearless you are.
Actually, I'm scared shitless, but I've gotten really good at hiding it.

I feel awful, too! I have such bad allergies this time of year.
You win.

Everything happens for a reason.
I'm beginning to doubt your intelligence.

I had a friend who died from that same kind of cancer!
Wow, what a coincidence. Fuck you.

Now here's what you could say instead.

1. I don't know what to say.
If you're feeling uncomfortable talking to us, we can probably tell. The best way to dispel awkwardness is to admit that you feel awkward. It's not our job to put you at ease, but maybe you'll feel better if you confess.

2. This is the worst news ever!
Of course you're upset to hear about your friend's diagnosis. It is totally fine to have strong feelings and to show them. But really, your friend should not have to reassure you or take on the burden of your feelings. I've kicked my family out to go cry in the waiting room during bad-news doctor visits. This is, first and foremost, my tragedy, and I can't be strong if the people around me are falling apart.

3. Is this a good time for you to talk about it?
We're all smiles in cancer land. We get complimented all the time for our positive attitudes. But sometimes our optimistic public face is in danger of cracking. We want to know that you care about us, but you can help by not pushing too hard for The Real Backstory in, say, the grocery store check-out line. Tell us you want to know more, and let us decide when we're up for that conversation. And sorry, you have to accept it if we don't want to talk about it at all.

4. Here are some ways I'd like to help you.
I like it best when offers of help are very specific. "I have a whole bag of fun wigs at home. Do you want to borrow them for a while?" or "I'm taking my kids out for ice cream later. Can I bring your kids along?" Then I can say yes or no without having to think of something helpful for the person to do. Also, when I get a vague offer of help and then I make a specific request, it makes both of us feel bad if the person doesn't want to do what I've asked.

5. Do you need someone to coordinate volunteers?
The first time my cancer came back after a 20-year hiatus, I was a busy working mother and was totally blindsided by the whole thing. My friend Anne offered to coordinate parents at my son's school to make meals for our family. The coordination was a bigger gift than the food itself. If you're good at this, you might want to offer to coordinate the help that comes in. Offering to help with information control is also good. My partner does this for me. He's willing to take phone calls or answer email from concerned friends when I'm feeling like a hermit. If you can offer this, it might take a huge burden off of the patient.

6. May I pray for you?
Many people find it comforting to know you're praying for them. To me it feels like you're proselytizing. But the rare person who asks me instead of TELLING me they're praying for me always gets a big fat yes. As long as you're not shoving your religious views down my throat, I am happy for you to pray if it comforts you to do so. Unless you know your friend shares your religious views, ask how they'd feel about having you pray for them.

7. You look great.
We like to hear this as much as the next person, but please, only say it if it's true. We might be bald. We might be scarred. We might have puffy faces from steroids or bruises from having blood drawn. So if we look like shit and you lie about it, we can tell. But I do like to hear it when I look sort of okay.

8. No strings attached.
I love to get letters, care packages, and email. It helps to feel loved, and I especially appreciate the people who let me off the hook. The emails that say, I wanted you to know I'm thinking of you but you don't have to write back. The phone calls that say, call me back only if you want to. The gifts that say, no thank you note is needed. I know I sound like a jerk. Someone sends me a gift and I can't even be bothered to write a thank you note? Returning phone calls is a burden now? But when I have very limited energy, I want to save it for my family and my garden and my writing. Cancer patients still have an obligation to be nice people, but maybe they don't have to follow all the social conventions perfectly right now.

9. Take cues.
Listen to me carefully. I might have just told you some really scary news about my health, but what else am I telling you? Am I being blunt and painfully realistic? Am I being cheerful, downplaying the seriousness of the news? Am I avoiding giving you details? Your job is to follow my lead. You can ask questions, but if I give you vague answers you need to drop it. It means I've told you as much as I want to tell you right now. If I'm optimistic, be optimistic with me. If I'm in the mood for gallows humor, don't try to force me to look on the bright side.

10. Say nothing.
That's right. I love it when people say nothing at all about my cancer. I'm tired of talking about it. I'd be curious to hear how other cancer patients feel about this, but I find it refreshing to be treated normally. That doesn't mean you should ignore my illness, but it can be a nice change to have an interaction with a friend where it just doesn't come up.

Above all, just do the best you can, and if you aren't sure you're giving the right kind of support, ask your friend how you can do better. Cancer patients may be walking an emotional tightrope a lot of the time, but we can recognize and appreciate good intentions, even if the things you say aren't pitch perfect every time.

Thank you Virginia C. McGuire, cancer warrior since the age of 10 and now Philadelphia based freelance writer. This was also courtesy of The Awl.

Friday, August 12, 2011

A Tiny Salute

Right now I’m a little dizzy. Not sure why, I suppose my body isn’t what it used to be anymore. Not after all the chemo and radiation of the past year. Turns out the BMT didn’t work and I’m just as sick as I was before. I have a big fat tumor on my side that’s already starting to make itself noticed. Oww. Not really sure what comes next, more radiation, surgery and perhaps I get to cut in line at the check out aisle.

But this post isn’t about me. It’s a tiny salute to the wonderful nurses I’ve met throughout my time with cancer.

The nurses that wake up at the crack of dawn everyday or the ones who spend the time awake by your side at four in the morning wiping sweat from your forehead as you puke up your insides or shit yourself in the bed. The men and women who bring you popsicles and take away the food when you can’t bare to breathe in any foreign odor The ones who change your soiled gowns, who give you a sponge bath because you don’t have the energy to stand up right in the shower, the ones who rub lotion on burnt skin. The ones who come and check on you after you’ve finally fallen asleep. The nurses who listen to your stories and get to know you and bring you a warm blanket when the hot-cold spells shake your body. The ones who walk you out to a cab to make sure you don’t fall over. They are the ones who pick you up when you’re lying on the hospital floor too nauseated and weak to make it back on the bed.

They are the people you never thought you might need and suddenly they are the only ones who can get you through. They are the ones who aren’t afraid to talk about death because they experience it everyday. The will to live might be relentless but so is cancer and sometimes no matter how much you want it, it doesn’t mean it’s going to happen.

Surgeons and doctors can cut you open but it’s the nurses who heal you. They can prepare you to keep on fighting or make it ok to start letting go.

So this is for Peggy, Cherie, Jeannie, Alina, Richard and all the nurses who I’ve had the luck of meeting in the past year. I may not remember all of your names but I do remember your smile. You smiling at me forced me to despite everything, smile back. And at least for that moment I felt a little bit better. For that and an endless amount more I will always be thankful.