Thursday, May 28, 2015

How Love in the Time of Cancer Began

On Monday night I had the great gift of reading at The Cornelia Street Cafe in New York City. I read a sampling of pieces from my books and blogs including this excerpt from Love in the Time of Cancer:

Intro to LITTOC and Amy Winehouse:

We were friends and then lovers. We began a new life. I’m Max and he is John. Well, not really, but soon you’ll see why we want to keep a modicum of privacy. 

We met years ago and we drank a lot of coffee, talked about books and sports, favorite restaurants and movies we loved. The conversations became more personal. We fell in love and became lovers. We became a couple in simple and complicated ways. We bought a bed and dishes, opened a joint checking account, went grocery shopping and took a vacation together. We took tiny, careful steps to meet each other’s family and friends. 

One day he asked me to drive him for a routine colonoscopy. I had done that for many friends. No big deal. I dropped him off and came back hours later. We sat in the small curtained cubicle waiting for the doctor to sign him out. I asked if he’d prefer for me to wait in the lobby, trying to be discreet, allowing him some privacy for a conversation about body parts. “No”, he said, “The doctor is just going to tell me that I have polyps and then we’ll go have lunch.” 

I remember those words because, of course, that is not what the doctor said. Instead when the doctor came into the little cubicle he looked at the chart, and then at me, and then at John, and then the doctor said, “You have a problem.”

The problem was cancer. Stage three colon cancer and so instead of lunches and vacations there was surgery and doctors offices and oncology. Our courtship was chemo and our honeymoon was caregiving. And there was lasagna—so much lasagna. 

I am lover and caregiver, but I am also a writer and fierce about what was happening to him and to me and to us. 

So I started this blog, “Love in the Time of Cancer” to tell my side of this story. I too am a cancer survivor but this story is about John’s cancer and my caregiving.

I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog.  I found so little useful information for couples that talks frankly about cancer and relationships and almost nothing that talked about cancer and sex. So, I’m a writer—I knew what I had to do.

Oh yes, there are those pamphlets. About as useless and the one’s I was given at 13 that were called, “You’re a Young Lady Now” and “Growing Up and Liking it.” Most of the official cancer resources have tried to be helpful but there have been so many platitudes and so very much condescension. 

I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

Well, our next steps were surgery, then chemo, then marriage then more chemo. It was literally a trial by (chemical) fire. But we made it through. But it wasn’t easy. I made a decision to get really angry. And it was a decision. As I was about to be overcome by sadness and fear I got mad. 

What follows is one of the first pieces that I wrote for Love in the Time of Cancer:

The Amy Winehouse House
A couple of weeks ago we visited a cancer support group to see what kind of help might be available. The place was lovely and there was a long list of activities for patients and caregivers. But a few minutes into the orientation I picked up the whiff of condescension that accrues around cancer. 

Part of it is the pastel 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 in the midst of a psychotic break.

The other hint is the two-handed handshake: the staff member takes both of your hands in hers and it is accompanied by the long, deep gaze which immediately feels like someone told the staff how that “people with cancer need to be seen.” And, 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. The counselor took me aside to explain the caregiver activities and told me with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make milkshakes”. Milkshakes! 

I said to John on the way home, “Why would I make milkshakes in a fake TV studio kitchen with a group of strangers because you have cancer?”

That milkshake was my turning point--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.  

The tagline at the Amy Winehouse House is: Fuck Cancer.

Our mission: 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 an ass before you got cancer, now you are an ass 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. 

Activities at the Amy Winehouse House include:
Making martinis
Strip poker night
On Saturday nights we have strippers.
... Yes for girls too.
And we have a smoking room …(if you have cancer and are going to die we want you to enjoy a cigarette on us.)

And of course, we have drug education.  We think of it 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 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.) 

We do have a Board of Directors. All nonprofits do. At The Amy Winehouse House we too have those that we turn to for guidance. These are the folks who help us stay true to the mission. 

So in the spirit of full disclosure here are the members of our Board:
Amy Winehouse 
Keith Richards
Grace Slick
Jackson Pollock
Janice Joplin
Darryl Strawberry
Sherlock Holmes
Frances Phelan
Anna Karenina
John Falstaff
Jimmy Hendrix
Joan Kennedy

As you can imagine, planning the Board meetings can be tricky. And, yes, we do know that some of these folks are dead. You may wonder about that, but that’s kind of the point. People die of cancer so these folks are helpful on that side of things. 

And yes, it has also been pointed out that some of our Board members are, in fact, “fictional.” These too are important Board members. Anyone who has worked in the nonprofit world knows that these are, above all, the best kind of board members to have. You know exactly what they are going to say, and they make a lot less trouble for the staff. 

Later I’ll explain our policies for volunteers. We don’t have tee shirts, but you do have to wear eyeliner. We’ll also talk about why we never liked Lance Armstrong, long before it was popular to dislike him. And yes, …we have bracelets too, but ours say, “Fuck Cancer.”

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