Cancer

New single out now!

My song Fight the Good Fight is out now on all the platforms.

You don't have to fight the good fight for me.
What's it going to take for you to believe me?
When your world's been blown apart,
I've got your back, I've got your heart.
You don't have to fight the good fight for me.


When my mom got cancer, I needed her to know that she didn't have to do chemo or radiation or any treatment at all if she didn't want to.

It was important to me that she not feel burdened by expectations or assumptions that she should fight her cancer.

In order to convince her that I wholeheartedly meant what I said, I wrote the song Fight the Good Fight for her.

Do you have someone in your life who is such a rock, so capable and responsible that it would seem completely out of character for them to NOT do the capable, responsible thing?

Are you in support of them giving themselves a little grace?

Do you want them to make their OWN choices about how to live and how to die?

Does someone you know need to hear this song? Send it to them.
Do YOU need to hear it? Listen up and let the love in.

What the fuck do I do now ... or someone I love's got cancer, how do I help? Start here.

So life’s caught up to you.

Someone you know and love has cancer or some other dread disease and you want to help (or have found yourself wanting to help) care for them.

And you don’t know what the fuck to do.

It’s all so overwhelming and hard and strange and tiring and confusing. You’re struggling to keep your head above water there are so many things to do and think about. So many dire decisions.

I get emails like this all the time now from friends and readers who are going through this. They’ve been thrust into caregiving by an illness of a loved one. They want to show up and do the right thing. They ask me for advice.

Start here:

  • 3 ring binder the shit out of all the paperwork

Get a 3 ring binder where you (and the person you are caring for, if they are able) can keep all the info the doctors and nurses and anyone else give you in one place. Or maybe a big file folder is more your style. Pick a system and use it.

You will be inundated with sheet after sheet of test results, forms, scripts, etc. You might want to be able to put your finger on her last blood tests, say. If you don’t keep it all in one place, that will be hard to do. And you will burn energy you don’t have looking for something simple like that. You can be a better advocate for your loved one if you have all the information handy.

  • The “Running Notes” notepad

It’s also a good idea to have one notepad or notebook (of these can be sheets of loose leaf paper you keep in the 3 ring binder) where you keep a running log of everything related to her health. You’ll want to write down things like: questions to ask the doctor the next time you visit, her vitals when she goes for tests (weight, blood pressure, date and time of recent BMs — yes you might you have to keep track of this), questions you think of to ask the doctor at the next appointment (undoubtedly you will have questions you did not ask, forgot to ask, that came up in between appointments), etc.

You will find it handy to keep track of how she’s feeling, what she’s eating and when, what her sleep was like. These details become more or less important throughout the illness. But having someway to follow along will help with certain decisions.

The reason to have these running notes is threefold.

One, it keeps track of where you are in the illness. It’s a logbook for you and her caregivers. You can use it to take notes at appointments and to look back to reference what the doctor said, how she was feeling, etc. Memory is tricky. Don’t rely on it. Especially when you are overwhelmed and tired beyond belief from the caregiving. Stress and worry does a number on memory.

Two, you won’t always be the one caring for your mom/dad/partner. If you aren't the one taking your mom to a certain appointment or if someone comes to spell you from your duties for a bit, they can see what's been happening with her care and you can ask them to take notes of things they do with her, what they observe. That way, when you get back to caring for her, you will know what has been going on.

Finally, it gives you a sense of control when you feel you have none. You and your loved one have just been walloped by life. Being able to write down lists and numbers and have something to do with your hands counts for a lot. It will help you deal with the stress and the worry and the anxiety.

I’ll keep writing about this topic as people keep asking me questions and reaching out. You can send me an email if you have questions. Until then, I am thinking of you and your loved one. Caregiving is everything — sweet, terrible, hard, amazing, will kick your ass, will make you weep for joy and wonder, will humble the shit out of you, will make you realize how strong you are. I wish you presence during it. Be with them. Show up. When in doubt listen and be present. That’s all anyone needs ever. Close your mouth and be there in person. And if you are moved to ask about their spirits or how they are doing ask “where does it hurt?” and “what’s the hardest part about this for you?” And listen to the answer. And if possible, find someone to ask you (the caregiver) these questions.

You are enough and I love you.

What A Song Is and What A Song Does: Intro to the Death Album

On December 9, 2017, I went into the studio to begin recording my next album — affectionately nicknamed (for now) “The Death Album.” The songs chronicle my time accompanying my mom from diagnosis of ovarian cancer to death. At this point, in the midst of this multi-year project, I feel compelled to corral some of the thoughts I had and notes I made along the way.

Death, a reading list - Part 2

Back in December of 2013, I wrote a post called "Death, a reading list."

So much has happened since then, not the least of which was the death of my Mom, I thought it was time to update the list.

As I embark on recording my next album -- lovingly nicknamed "The Death Album" for now -- I wanted to lay a trail of breadcrumbs between the worlds (and words) I've been immersed in and the songs I've been writing about my Mom, our time together, her living and dying, and my own living and dying ("you are dying everyday").

As with my original post, this list is certainly not a “best of," nor is it in any particular order. You have to find your own way through this topic, as we all do. And just because a book appears here does not mean I loved it and would recommend it without reserve. These titles have shaped my thinking about death, but that shaping may have come in the form of a single sentence or two, a single chapter, or merely a stance toward mortality more generally.

I've only carried one book over from the original list (go back to that post if you want to see the others) and that is Christopher Hitchens's Mortality.

I am never not reading Mortality. I finish it and immediately begin again. I've given away my own copy so often -- at gigs and to friends and acquaintances -- that I now keep a stack on my desk for just such occasions. It is the keystone of the Death Album; it is the touchstone of the songs about death I have written and am writing still.

THE LIST:

Christopher Hitchens, Mortality

Leo Tolstoy, The Death of Ivan Ilyich

Julian Barnes, Levels of Life & Nothing To Be Frightened Of

Astrid Lindgren, The Brothers Lionheart

Roland Barthes, Mourning Diary

Max Porter, Grief Is The Thing With Feathers

Atul Gawande, Being Mortal

Edited by Kevin Young, The Art of Losing: Poems on Grief and Healing

Complied by Yoel Hoffman, Japanese Death Poems

Alphonse Daudet, In the Land of Pain

Marcus Aurelius, Meditations

Barry Lopez, Arctic Dreams

Lapham's Quarterly: Death, Volume VI, Number 4, Fall 2013

 

 

A cold reading of the Death album

Cold reading is a term used in theater. It means "reading aloud from a script or other text with little or no rehearsal, practice, or study in advance" (Wiki). 

A playwright schedules a reading so she can get a feel for how the play is working as a whole, so she can hear the rhythms of the language of the play in the actors voices. It allows her to see the play from a distance, usually for the first time. It's an integral part of the creative process.

On December 11, 2017 at my apartment on the Bowery, around 35 brave and generous souls gathered to listen to me "read" through nine (out of the 25) songs I have written for the Death album. 

The questions I wanted to answer by staging this reading were these:

  • What is the best way to tell the story of my time as my Mom's caregiver from her diagnosis to her death? What songs? In what order?
  • What is the narrative arc that is most powerful to a listener?
  • How do I talk about these songs as I am performing them? What is the stage banter, if any?
  • How do I keep the show from being too sad? My time with my Mom was filled with happiness and joy, so how do I show the full range of that experience in a set of music?
  • How do I end the show?
  • In general, how did these songs work? What feelings, conversations, and moments did they create?
  • Playing these songs, creating this event, am I any closer to my goal of changing the conversation -- or lack thereof -- around death?

Here's a picture of the set list from that night ... 

If you were there that night, thank you for coming. It was quite an evening! There were more than few tears and more than a few laughs -- including a hilarious prank pulled on me during the show by my dear old Dad!!

I'm so grateful for your attention, your openness, your willingness to cry, laugh, and share yourself with me and my family and friends. We created more than a few moments that night, didn't we?

If you weren't there, I'll be doing more of these evenings at my apartment in NYC.

Don't want to miss out? Make sure you are on the NYC concert list, otherwise you won't get the details about the house concerts and other gigs around the city.

Don't live around here? Let me know in the comments below if you want Facebook live concerts of this music and the album as it takes shape. 

Art isn't a result

"It's a journey. The challenge of our time is to find a journey worthy of (our) heart and soul."
-- Seth Godin

My journey -- since October 11, 2011 -- has been to go to the edges of death and dying, at first walking hand-in-hand with my Mom. She died on October 13, 2015.

 I am still on the same journey.

These days I have been calling myself a "songwriter who is ready to die."

What does that mean?

I've spent the last five years contemplating death, preparing Mom for hers and preparing myself for mine. Being ready to die was and is a daily action, like bathing or eating or sleeping.

It is a way of being in the world.

Being ready to die.

With the songs I am writing now -- the Death Album (as I affectionately call it) -- I am using music to crack us open to a conversation about death and dying which is always also a conversation about life and living.

"Art might scare you.
Art might hurt you.
But art is who we are and what we do and what we need.
An artist is someone who uses bravery, insight, creativity, and boldness to challenge the status quo. And an artist takes it all (all of it, the work, the process, the feedback from those we seek to connect with) personally." -- Seth Godin

I wanted you to know

It's been a little over two weeks since my Mom died. 
I am so sorry for not reaching out sooner.  I've been beyond heartbroken.  More like heart-crushed.  I've been speechless.  Paralyzed to reach out to you.  You, who have been such good friends, such tender, worthy companions on this four year journey.  
It's just that the end was ... so many things.  So very many things. 
I'll be writing about it (the beginning, middle, and end of the end) more on this site, in songs, letters, essays, and on a new site I'm making chronicling my vagabonding in the land of death. I'll be painting and drawing about it, too.  And, of course, I'll be living it.  Day by day by day. 
For now, for you, here is the obituary I wrote for my Mom and a portrait I took of her in 2014.
(If you'd like to leave a comment, please do.  Don't second guess yourself.  Just open your heart and write.  I will read and respond to every single one of you.  If you'd like to write me or my family a letter, my mailing address can be found on this page.)

On October 13, 2015 Katharine Draper “Puss” Schutt, 71, of Chadds Ford died peacefully at home after a lengthy and honorable reckoning with ovarian cancer.  Puss was a lover of the outdoors, deeply committed to her community, and – above all – devoted to her family.  Throughout her illness, she was tenderly cared for by her husband, children, and sisters, the oncology team at the Helen F. Graham Center, and Delaware Hospice.  

Puss was raised on Twin Bridges Farm, Chadds Ford and was the second born of Katharine Reeve Draper and Ford B Draper.  She attended Tower Hill School before graduating from Milton Academy in 1962 and from the University of Pennsylvania in 1966.

She married Charles Porter “Chip” Schutt Jr. in December 1967, embarking on a wonderfully full union of their two large families and the creation of their own.  Puss joined Chip in his passion for sailing and they traveled extensively and adventurously.

Puss worked with great devotion for many organizations, including as President of the Garden Club of Wilmington and as President of the Board of Trustees of Tower Hill School.  She contributed significantly to the successes of the Delaware Center for Horticulture, the Winterthur Point-to-Point, the Vicmead Hunt Club, and Christiana Care Health System where she remained engaged even throughout her last year.  Her earnest interest, valuable insights, and wise counsel will be greatly missed by all who had the privilege of working alongside her. 

Puss loved spending summers in Northeast Harbor, Maine and winters at Galio Farms in Vredenburgh, Alabama.  She remained connected to both communities year-round through her subscriptions to the local papers.  Since childhood and until her last days, she reveled and found solace in the natural world.  For many years she shared a family passion for riding and foxhunting with Mr. Stewart’s Cheshire Foxhounds. Dogs, too, were always part of her life.  She was an avid walker, alive to the particularities of the wildflowers and birds of every landscape.

Puss had a gift for remembering the complex genealogies of both her and Chip’s extended families.  She delighted in creating and strengthening connections—hosting innumerable family gatherings, holiday meals, and impromptu get-togethers, writing unique and chatty letters, and always making the effort to ask about the lives and interests of others.  She believed in the importance of a firm handshake and looking people in the eye.  Puss had the true sign of greatness in that she was absolutely without pretension.  She had a profound respect for every human being and was warm, generous, and inclusive in her attention.

Above all, she was the spark of the spirited family she and Chip created: daughter Kate of New York City; son Jake of Mill Valley, California, his wife Hilah, and their children Jasper, Elsa, and Luke; and son Porter of Wilmington, his wife Laurisa and their daughters Ryann, Tatum, and Bridget. 

She was predeceased by her sisters Avery Draper of West Chester and Ellen Chadwick of Chadds Ford and is survived by siblings Jim Draper of Alexandria, Virginia, Prue Osborn of Unionville, Reeve Draper of Wilmington, and Ford Draper, Jr. of Chadds Ford.

Puss’s smile, kindness, and genuine interest in others will be remembered by all who knew her.

A Memorial Service will be held on Saturday, November 7, at 10:00am, at Christ Church Christiana Hundred, 505 E. Buck Road, Wilmington, DE 19807.  A reception will follow at Vicmead Hunt Club, 903 Owls Nest Road, Wilmington, DE 19807. 

In lieu of flowers, donations may be made to either the Brandywine Conservancy , P.O. Box 141 Chadds Ford, PA 19317 or the Friends of Acadia , P.O. Box 45, Bar Harbor, ME 04609.

Death, a Reading List

I want to share a reading list of the books about death and dying that I find worthwhile, thought-provoking, gut-wrenching.

Why?  I'm writing a new handful of songs right now and they all have to do with dying. 

Why now?  In October 2011, my Mom was diagnosed with Stage 3c primary peritoneal carcinosarcoma.  In layman's terms, ovarian cancer.   The day she found out, I moved home to be her primary caregiver.  I didn't return to my "normal" life (whatever that is) until June 2013.  That's when the de-bulking surgery, 12 rounds of front-line chemo, 9 rounds of maintenance chemo were enough to keep her in remission.  She's alive.  She's thriving.  For now.

"to live is just to learn to really die"

- a line from my song "The Actress" on the Telephone Game album -

This collection of books and articles is certainly not a “best of” list, and is in no particular order. From each piece, at least one sentence helped me on my own journey of dealing with disease and dying over these last two years. What books or articles would you add to this list?  What has helped you get through your tough times?  Let me know, in the comments below.

Christopher Hitchens, Mortality

Jamaica Kincaid, My Brother

Joan Didion, The Year of Magical Thinking

Rebecca Solnit, The Faraway Nearby

Christian Wiman, My Bright Abyss

Ed. Nell Casey, Uncertain Inheritance, Writers on Caring for Family

William Irvine, A Guide to the Good Life

From the Atlantic: How Not to Die, by Jonathan Rauch

From the New Yorker: Letting Go, by Atul Gawande