Bye Bye Lance

The Amy Winehouse House was not asked for an official comment on last night’s Oprah interview with Lance Armstrong. But our founder taught us to never wait to be asked. So here goes: We haven’t liked that dopey guy for years. He is arrogant, mean—(such mean little eyes, no?) and now the fool has taken on Oprah. Oh well. Our dear founder (RIP) was a musician and singer and had only great respect for her peers so we couldn’t help shouting at the TV, “Ask Cheryl Crowe!” and “This jerk broke Cheryl Crowe’s heart?” Watching this guy with Oprah can you just imagine what a prick he was in an intimate relationship? Cheryl, you are in a better place. And yes, our dear Amy is too.

For those of you who are new and have not heard about our specialized cancer support center here is a post from 2009 when I created The Amy Winehouse House:

(Love in the Time of Cancer 2009)    

A couple of weeks ago we visited a local support group for people with cancer to see what services or support might be available. The house is lovely and there are many activities, support groups etc. But about 30 minutes into the orientation I picked up the whiff of overriding condescension that accrues around cancer. Part of it is the pastel and pretty approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone with Down’s syndrome or to someone in the midst of a psychotic break. The other hint at condescension is the two-handed handshake: the staff member takes both of your hands in theirs. This is accompanied by the long, deep gaze, which immediately feels like someone told the staff how important it is to make eye contact and that “people with cancer need to be seen.” Well, they are going to make dam sure you know you are seen.

But the greatest tip off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. At the support center, the counselor told me--with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make smoothies.” Smoothies.  As I told John on the way home, “I have never made a smoothie in my life so why would I make smoothies in someone else’s kitchen with a group of strangers just because you have cancer?”

That smoothie was the turning point for me and it set me to thinking about the kind of cancer support place I’d like to create. Hence the birth of The Amy Winehouse House.  So here are some of the things that are offered at the Amy Winehouse House:

The mission of The Amy Winehouse House is: Fuck Cancer

We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At the Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were a jackass before you got cancer now you are a jackass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover.

All activities at the Amy Winehouse House are optional and include:

Making martinis

Strip poker night

Learning how to hot wire a car

Our book group is currently reading, “Snuff” by Chuck Palahniuk

We have a smoking room ((if you have cancer and are going to die we want you to enjoy a cigarette on us.)

On Saturday nights we have strippers. Yes for girls too.

And we certainly do have drug education.  We think of this as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score some medical marijuana. Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.)

In future entries I’ll explain the Board of Directors and our policy for volunteers. (We don’t have tee shirts but you do have to wear eyeliner.) We’ll also talk about why we hate Lance Armstrong (We call him “One Ball” around the House.) And, yes, we have bracelets too, but ours say, “Fuck Cancer.”

Alanon for Caregivers

I was at an Alanon meeting this week. Alanon is the 12 step program for family members or friends of someone with an addiction. So I realized that Alanon is a great resource for cancer caregivers. (And don’t we all qualify for Alanon? Do you know anyone who doesn’t have a relative or friend with addiction or recovery in their story?)

The ideas that are discussed in an Alanon meeting are all things that we struggle with as caregivers: We are powerless; we struggle to admit our powerlessness; we try to find the right Higher Power; we have to stop making cancer or the oncologist or the loved one with cancer into our Higher Power; we need prayer and meditation; we have to stop giving advice --and the thing that is key and so, so hard to practice: We have to learn self-care and to keep the focus on our selves.

Yeah, I know, “Keep the focus on yourself”. Seems crazy but it’s true. People in Alanon know about this: at the very time it seems impossible to stop focusing on the other person is exactly when you have to shift gears and go to self-care.

And no one can do that alone. That’s why we have caregiver support groups and phone lines for cancer caregivers and places like The Hope Club and Alanon. We need each other. I need the wisdom you have today, and I’ll loan you mine tomorrow.

Take a look at the Twelve Steps. They can work for cancer and caregivers too.

Maybe Fear Just Is....

I watched the Golden Globes last night and I was struck by the number of women who mentioned their self-doubt or "not fitting in" or having fears about their work/career/talents. And today I read the New Yorker piece by John McPhee--who is an extraordinary writer and The King of nonfiction and a literary star by anyone's account and he writes about the "terror" he faces when he begins a new piece.

It is making me re-think fear. Maybe we should not (I should not) spend so much time (and energy and money) trying to get rid of fear. Maybe just accept it? Maybe just say "Yep--more fear" and keep going?

Maybe treat fear like a toddler having a tantrum. (It's kind of like that really...) And say, "Okey-doke sweetie, when you're done with that tantrum I'll be right over here.

Dying Nurse Is a Nursing Teacher

Here is a great story from today's New York Times. Martha Keochareon was a nurse with a passion for teaching. This passion--or dharma--carried through all the way to her deathbed where she offered herself as a study subject for nurses in training.

Read this article (link below) to see how passion and usefulness persevere no matter what but also to see how death from cancer is described and managed. It is quite moving too to read how the nursing students came to understand the role and experiences of family caregivers in cancer care.

http://www.nytimes.com/2013/01/11/us/fatally-ill-and-making-herself-the-lesson.html?smid=pl-share

Move a Muscle Change a Thought

What happens to our bodies and our brains when we are caregivers?

  

We know a lot about the brain and addiction and stress. We know that caregivers are at high risk of misusing drugs and alcohol abuse and eating problems. The attitudes of people around us are not always the helpful. “Well, she deserves a glass of wine” or “Sure he smokes some dope but really—all that stress—he has to relax.” Or, “Yes she’s gained a lot of weight but taking care of her partner is really hard.”

But what are we missing? How can we manage that stress and even the trauma of caregiving?

This week I’ve been at a workshop with Bessel van der Kolk—who is the Director of The Trauma Center in Boston and considered by many to be the world’s top expert on trauma. He talked a lot about what happens to soldiers and veterans, of course, and what happens to people that experience terrible sexual traumas or who are in horrific accidents. Those folks come to him for help.

But he also talked about the relationship between trauma and stress and addiction. He talked about what happens to doctors and nurses and caregivers. We’ve known about that intuitively, of course. Most professionals recommend support groups where we are encouraged to process our stress with lots of talking and sharing. But van der Kolk explained that talking can only help to a degree; we need to change the body first or words won’t work. “Calm the body to calm the brain,” he says.

That helped me to understand why I can’t always talk myself out of my feelings, and why it’s frustrating when someone says, “You don’t need to feel that way” when we are mad or sad or scared. We can’t get at thoughts with other thoughts—we need to go through the body.

What trauma experts like Bessel van der Kolk recommend are breathing exercises, yoga, walking, stretching, dancing (not any formal kind just moving around to some music)—movement. Now it’s been documented: Changing the body can change the brain.

Caregiving Kills

For the longest time I have talked about caregiver stress and the toll it takes. I’ve had many people including doctors and nurses talk to me about my stress level and what I need to do about it. I have always agreed, and I believed that it’s a serious issue for others, but secretly I always felt that it was just a way of saying, “Yeah, caregiving is very hard, but…”

And what follows that “but” is, “I’m not the one who is sick” or “Of course I feel bad” or “Yep I’m tired but I’ll get through this.”

But this week I got the nuts and bolts of why stress is bad—and not just bad for my mood or my emotions but quite bad for our bodies. And yeah, I always knew that caregiving makes people look older faster but I always thought they look older because we are so tired. But that’s not quite it.

Peter Vitaliano, who is a professor of geriatric psychiatry at the University of Washington explained to me that caregivers have a much higher incidence of high blood pressure, diabetes, and compromised immune systems because have prolonged exposure to extra high levels of Cortisol and adrenaline. It’s not that we look like we’re aging faster—we actually are aging faster. Our bodies, flooded with cortisol and adrenaline, are rapidly breaking down like a film running very fast…aging, aging, aging. And it’s not just the matter of how we look—though I do care about that, no question—but all of our cells and organs are aging faster too. And what comes with aging: illness, disability and yep—cancer.

So as cancer caregivers we are at a much higher risk of disease and particularly cancers. How about that?

Why does this mini scientific fact help me? Because I can picture it. When I get stressed or allow myself to stress out it’s as if a big hypodermic is going right into my arm and shooting me with a super-aging serum. And the scariest part is that these two main stress hormones are addictive. This is why it becomes so hard to stop caregivers from staying in stressful situations even though they may understand and may want to change things. We get used to that buzz just as we get used to that, “Only I can take care of him/her” codependence.

Yes, as always, much easier said than done. But somehow being able to picture myself “doing drugs” within my own body has gotten my attention big time.

Here is New Years joy from the geekiest part of CancerLand--the research! A fun video and musical inspiration from McGill University. Science can rock. Enjoy!

A Prayer for New Year's Day

Above all, trust in the slow work of God.
We are quite naturally impatient in everything
     to reach the end without delay.
We should like to skip the intermediate stages.
We are impatient of being on the way to something
     unknown, something new.
And yet it is the law of all progress
     that it is made by passing through
     some stages of instability—
     and that it may take a very long time.

And so I think it is with you;
     your ideas mature gradually—let them grow,
     let them shape themselves, without undue haste.
Don’t try to force them on,
     as though you could be today what time
     (that is to say, grace and circumstances
     acting on your own good will)
     will make of you tomorrow.

Only God could say what this new spirit
     gradually forming within you will be.
Give Our Lord the benefit of believing
     that his hand is leading you,
and accept the anxiety of feeling yourself
     in suspense and incomplete.

—Pierre Teilhard de Chardin, SJ