Monday, November 24, 2008

Leroy Sievers and "My Cancer"

While looking through recent articles in Obit Magazine, I came across one about a cancer blogger, Leroy Sievers who died August 15, 2008. (I think blogging is a form of contemporary literature that we haven't brought up yet.) Sievers, who was an executive producer for Nightline, began blogging about his cancer experience in 2006 when he started writing commentary for NPR's Morning Edition.

Sievers was diagnosed with colon cancer about 4 years earlier. In 2005, he was found to have cancer in his lung and brain and was given 6 months to live. He participated in a Discovery Channel documentary entitled "Living with Cancer".

He used his blog to discuss his experiences with the medical community and how his diagnosis effected him emotionally and physically.

"My doctors are trying to poison me. Oh, they have the best intentions. They call the process chemotherapy. The idea is to poison the body enough to kill the cancer, but not quite kill the patient. Best I can tell, it's a difficult line to walk. " May 11, 2006

His commented on a lot of the daily issues and life changes that his cancer brought. Some of these topics included outliving his prognosis, keeping clean, giving up his beloved Jeep that he could no longer drive, and making the decision to sign on to hospice. The post below describes another big change.

"It pretty much fills the room. It took four of us, actually five of us, to get me into it.
It's my new bed.
The only really scary part was when I slipped and almost fell on the floor.
The bed's electric. It lets me do things I couldn't do before.
But let's be honest, too. It's a hospital bed. It was not an easy decision to bring it into the house.
But here I am, in it.
Cancer World brings another change."
August 11, 2008

Sievers' wife Laurie Singer continues his blog.

Monday, November 24, 2008 by Amber Wollesen, MD · 0

Monday, November 17, 2008

"Casimir Pulaski Day" by Sufjan Stevens

There is not a lot known about the background of Sufjan Steven’s song “Casimir Pulaski Day”. Whether completely fictional, or based on some form of personal experience, the song easily resonates with the listener.

Like many contemporary songs that speak of a loved one dying, there is a large element of questioning and doubt etched in between the lines. The inner turmoil between the singer and his faith become more of a theme than even the death of the loved one.
If you are unfamiliar with Sufjan’s work, you’re not alone. Born in Petoskey, Michigan in 1975, he is considered a part of the indie folk/pop culture. He has only broken out occasionally into mainstream in the last several years. You can learn more about him here.
The title for the song comes from the day the singer’s friend dies, the first Monday of March, which happens to be Casimir Pulaski Day. Haven’t heard of this one? Illinois is the only state that currently celebrates this holiday.
The song tells the story of a girlfriend, perhaps, who is diagnosed with bone cancer. Take a minute to listen and read through the lyrics:

"Golden rod and the 4-H stone
The things I brought you
When I found out you had cancer of the bone

Your father cried on the telephone
And he drove his car to the Navy yard
Just to prove that he was sorry

In the morning through the window shade
When the light pressed up against your shoulder blade
I could see what you were reading

Oh the glory that the lord has made
And the complications you could do without
When I kissed you on the mouth

Tuesday night at the bible study
We lift our hands and pray over your body
But nothing ever happens

I remember at Michael's house
In the living room when you kissed my neck
And I almost touched your blouse

In the morning at the top of the stairs
When your father found out what we did that night
And you told me you were scared

Oh the glory when you ran outside
With your shirt tucked in and your shoes untied
And you told me not to follow you

Sunday night when I cleaned the house
I find the card where you wrote it out
With the pictures of your mother

On the floor at the great divide
With my shirt tucked in and my shoes untied
I am crying in the bathroom

In the morning when you finally go
And the nurse runs in with her head hung low
And the cardinal hits the window

In the morning in the winter shade
On the first of March on the holiday
I thought I saw you breathing

Oh the glory that the lord has made
And the complications when I see his face
In the morning in the window

Oh the glory when he took our place
But he took my shoulders and he shook my face
And he takes and he takes and he takes"

There are so many touching things about this song. There’s vulnerability in the storyteller’s words, letting us glimpse such intimate moments. Did you notice, the moment of her death a cardinal smacks into the glass window of her room, is it irony, symbolism? Maybe both. Birds have long symbolized the souls of the departed. Here is an entire post devoted to the subject to check out.
Can you feel the struggle of faith throughout the song? It is blatant at times, like the phrase “pray over your body, but nothing ever happens”, but more often subtle. For instance, most of the stanzas that start with “oh the glory that the lord has made” end with a contrasting sentiment, complications, doubt and even loss.
I think this song does such a nice job of capturing the grieving process. Isn’t it often about remembering, i.e. those little snippets we get of her life? But it’s also about processing and questioning. Even the ending is apropos; the grief isn’t all packaged up and done with, but still ever present, as the singer repeats his lament to God that “he takes and he takes and he takes”.
Works: Steven, Sufjan "Casimir Pulaski Day" Illinois (2005) Asthmatic Kitty
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Monday, November 17, 2008 by Amy Clarkson · 5

Monday, November 10, 2008

Old Milwaukee and Art Therapy

Or - Old Montreal and Art-as-therapy.

I was in Montreal recently for the 17th International Congress on Palliative Care. For those of you who have never been, the conference takes place 'downtown' in the area known as the Quartier International (lots of banker-types in suits, cell phones attached to ears as they walk down the sidewalks). The QI is right next to Vieux Montreal ("Old Montreal"), an area on the St. Lawrence which looks and feels like a medieval center of a European city. It's a main tourist area, with lots of streets-made-for-strolling, and where I think most of the conferences goers ate dinner. It's a beautiful place, slightly decayed, and has incongruous vistas (at least to this Midwesterner) which combine Old World cobblestone charm and decaying 20th century grain tower hulks - a site familiar to me from the upper Midwest. For an American however the feel is very Old World, and on the last night I was there my dinner mates and I wandered over to the St. Lawrence to watch a chorus sing/chant an eerie aria (like something from Rosemary's Baby), while sitting on concrete pylons in the water, in the dark, with flames burning in the background and on the water. I'm not sure how they got the flames on the water. It was fantastically weird and creepy and the spell wasn't broken even when a mini-armada of paddleboats came out to retrieve the singers from the pylons when it was over.

Despite the lack of resemblance, however, I kept on calling Old Montreal 'Old Milwaukee' the entire time I was there. I've never drunk the stuff, although it's a legendary brew and I've become somewhat of a Milwaukee partisan since moving here (I think it's brewed in Detroit these days anyhow). The persistence of the substitution I decided was probably because I was missing my boys back in Milwaukee. And, I guess, we live in an older part of town, so on some level it made sense.

The entire time I was there in Montreal, I deeply missed my boys. I've never had such a sense of existential peril - fragility - since I had children. I know this is nothing profound, and I'm a pretty well put together person emotionally, but since I had kids what sense of vulnerability I have is very much focused on them. Worrying they will die and I'll lose them; worrying I'll die young and not be there for them and not get to see them grow into men. This sense of peril and vulnerability becomes heightened whenever we are apart - it's nothing huge - I don't freak out and lose sleep - but it's something I carry constantly with me - a presence - when I'm away or they're at their Grandparents, etc.

It's in this context that I stumbled across Cancer Connections/Cancer: vu et vecu at the Place des Arts, not too far from Vieux Montreal. It's a traveling exhibit of photos submitted by Canadians by/about/of people who have/have survived/have died from cancer (you can see all the photos at the website). There were several hundred photos on display, outdoors at the Place des Arts, and I was there around lunch time, completely by accident, surrounded by about 100 pre-teen school children on some sort of riotous field trip (whose major theme seemed to be 'run around like squealing like mad'), looking at the photos, balling my eyes out.

The photos on this post are from the exhibit, and if you look through the website and have ever taken care of patients with cancer (or have/have had loved ones with cancer) many of the images will be very familiar to you - scarred bodies, cachexia, alopecia, families sharing moments of affection and solidarity and grief, parents holding pale, Cushingoid toddlers. I found myself looking at my patients - at something very familiar to me - but also at myself. 'Myself' in the sense of my own grief and loss for my patients, but also my own fear that this will happen to me and the losses captured on film will be losses my children will experience if I die too young or I will experience if one of my children becomes ill.

There is inevitably a lot of grief in medicine, and certainly in palliative care. In order to function on a day to day basis I have to actively 'manage' my grief for the losses of patients I care about, and from the burden of witnessing others' grief and loss. Part of this is, at least at the bedside, being aware if a patient/family is challenging my boundaries due to the sheer magnitude of grief/emotion or because some aspect of the situation speaks to my own vulnerabilities (particularly as a father) - i.e. the situation runs the risk of becoming 'about me' and not the patient/family.

I don't mean to suggest that this is some sort of major struggle and that I'm on the verge of freaking out about my boys all the time. Nothing like that. It's more of a steady, low grade presence in my working life, something I keep a check on, and often diffuse with my interdisciplinary team. If you ever sit around with your team members, shaking your heads, saying This is a tough one - that's what I mean by diffusing it. But there's always some grief with me, and for professional sanity and to provide the best care for my patients I keep it to myself: at the bedside, it has to be about the patient/family. If not, and if it becomes unchecked you run the risk of fizzling out, avoiding rooms because they're 'too hard,' not sticking around to answer the tougher questions.

However, in front of these photographs, it was safe for it to be all about me - my losses, my affection for my patients, and my love and fears for my family, particularly my boys. There was only a hundred Quebecois schoolkids to witness; pretty safe relatively speaking, particularly as they were engaged in their noon-time riot. I began to cry, looking at the girl with her Granddad and the G-tube, and I realized boundaries I have in place to prevent me from overflowing with emotion at the bedside weren't needed in front of the photos - I had no therapeutic alliance to maintain or composed posture to defend. It was a wonderful hour of tears and catharsis, in a way I'd never experienced before. I've never understood catharsis, or people approaching art with the hope to see their experience reflected back to them in a way which allows for emotional release or whathaveyou. This may be because I'm jaded and cynical (and read a lot of art theory when I was younger and had 'ideas' about what art was supposed to be about and it's not a doctor blubbering about his existential dread while traveling for a conference); but it also may be because I've never had much in me that needed catharsis - I've lived a relatively blessed life (and still, to be sure, am living one) and it may only be the last few years - getting older, kids, hundreds of patients dying a year - that I had something that needed catharsis, particularly as the stimulus to much of my grief is one that I have to repress/manage as it unfolds.

So this was a first for me, at least that I am aware of, and the release and opportunity to it allowed me couldn't have happened without the images. Most of them are simple snapshots of familiar scenes - and scenes familiar to me from that place in me that knows how vulnerable my little life is. I am curious if others, as they've entered this work, or accumulated personal losses in their life, found that their relationship to the arts changed because of it, and found that they appreciated opportunities to cry for themselves about their patients and the way patients make them feel but in a 'safe' way; away from the bedside....?

Afterwards I headed back to the QI, and ran into a friend and told her about the exhibit. She thought it sounded a bit too heavy, so instead we went to see a showing of Randy Pausch's Last Lecture. God I love palliative care folks sometimes....

Monday, November 10, 2008 by Drew Rosielle MD · 5

Monday, November 3, 2008

Life Before Death

Amy's earlier post on postmortem photography reminded me of an article I had read sometime ago about a photo exhibit entitled "Life Before Death". This exhibit contains 24 pairs of black-and-white photos, one before and one after death. They were on display earlier this year as part of the Wellcome Collection, an art collection in London that focuses on the development of medicine.

Journalist Beate Lakotta and photographer Walter Schels spent a year following hospice patients in Germany. The people they photographed ranged from 17 months to 83 years old. They also conducted interviews of those they photographed.

The photos above are of 67 yo Edelgard Clavey. “I want so very much to die. I want to become part of that vast extraordinary light. But dying is hard work.”

The photos below are of 52 year old Heiner Schmitz. “Don’t they get it? I’m going to die! That’s all I think about, every second when I’m on my own."

Per an article on the exhibit, the goal of the artists was to break through the taboo of talking about death. "The dying want to talk about what it feels like to die, and the living ought to listen, for death can strike at any time."

When comparing the photos, I could see the normal signs of death, eyes sunken in, a loss of fullness in the face. But something interesting I noticed in all the photos was a shadow cast across the faces of the person after they died. It's as if a light has gone out.

I must admit when I first saw these photos, I found them a bit disturbing. When I really looked at them and started reading about the exhibit, I changed my view. During an interview about the exhibit Schels said, "People are almost always pretending something, but these people had lost that need. I felt it enabled me as a photographer to get as close as it's possible to get to the core of a person; when you're facing the end, everything that's not real is stripped away. You're the most real you'll ever be, more real than you've ever been before".

Monday, November 3, 2008 by Amber Wollesen, MD · 4