Category Archives: Uncategorized

[Cancer Knowledge Network] Talking to your Child about Death and More

This article is also available at the Cancer Knowledge Network.

“What is cancer?”

“Something you can die from,” an adolescent in remission once told me.

He later described his treatment to me, saying, “if it weren’t for the treatment, I would’ve been….” His voice trailed off as he swiped a finger across his neck and made a krrr sound. “It’s true,” he concluded, nodding.

This teen, in this moment, chose to express himself outside of words. He had been comfortable defining cancer explicitly in relation to “death” before, so why did his words falter now? I remember being taken aback by this symbolic beheading, an action fraught with connotations of cancer as both violent but also punitive. I wondered how many other children associated cancer with death, how many felt as though they were receiving a death sentence when diagnosed.

In a world where cancer is one of the leading causes of death for adults, it’s no wonder why many people instinctively associate cancer with dying. With cancer as a disease commonly in the spotlight in society—with Cancer Moonshot and other awareness efforts towards prevention, treatment, and cure ever-present in the media—I worry that many kids have fears of death earlier on that often go unaddressed. A fear of death can be held by any young person with cancer, even those with highly treatable forms.

With these high cure rates for some childhood cancers, I can understand why discussions about dying may not immediately enter into the picture. I feel like conversations about death and dying often happen late in the course of treatment, sometimes as they should. That being said, I think it’s important for children to feel comfortable voicing any concerns that they may have about what it means to have cancer as a young person.

This conversation illustrated to me the importance of understanding a child’s fears upon diagnosis and throughout the course of treatment. Another teen I spoke with defined cancer as “[s]omething… that… makes you special…” I asked her how, and she proceeded to explain “cause…I don’t know. Cause, you get to meet a lot of people with that and not a lot of people are able to do that.” To her, cancer was something that she valued. She appreciated the people that she was able to meet because of her cancer. Her perspective on cancer was less antagonistic and more thankful for the good that had come out of her diagnosis.

This, to me, is one of the reasons that palliative care and child life support early in a child’s cancer diagnosis can be especially instrumental. These specialists devote a great deal of attention to a patient’s understanding and ability to cope with a cancer diagnosis. Since cancer can mean something entirely different to each and every individual, taking the time to focus on a patient’s perspective on cancer can improve a young person’s quality of life and enhance healing.

Simply asking can make all the difference: What does having cancer mean to you? How do you feel about your cancer treatments? What worries you about the future? From open-ended discussions to coping activities, palliative care and child life specialists are equipped with tools to delve into the psychosocial complexities of a cancer diagnosis, be it a fear of death or a new perspective on life. But these are questions any provider can ask; anyone can express an interest in the many ways cancer permeates into one’s life. By asking, we can show youth that we care.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Uncategorized

[Pulse] On Earth As It Is in Heaven

I don’t know what prompted me to take this picture. In retrospect, I imagine this is what death looks like, or feels like. On death’s door, the vast promise of something more (perhaps heaven) lies ahead–pure and natural, mysterious in its perfection. But there are things that hold us back, stopping us like a red light. Eventually, something’s got to give.

on earth as it is in heaven

This photograph was featured in Pulse–Voices from the Heart of Medicine.

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Filed under Miscellaneous Musings, Uncategorized, Visualizing Illness

Breaking blog silence

Hello, world!

It’s been awhile. Medical school has been busier than I expected, but now that I’ve (somewhat) transitioned into it and my first year is nearing its end, I’m hoping to slowly ease back into blogging. Time in medical school is strange and warped, and I find myself wanting to make the most of any and all free time that I have outside of studying by abstaining from technology, so it’s been challenging to maintain this blog. That being said, I’m ready to try.

Some exciting pieces of news to come in the next few weeks. Stay tuned!

 

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Inside Chronicling Childhood Cancer: Decision-Making in the Art of Narrative Compilations

For the next several posts, I will be delving into different components of the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer. A heads up about what’s to come in the month of November (after all, why should childhood cancer awareness be restricted to the month of September?!):

-About the Book Cover

-About the Charities

-Ethical Considerations in Self-publishing the Work of Others

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Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer

In honor of Childhood Cancer Awareness Month this September, it is my great pleasure to announce the publication of the book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer. In this narrative collection, ten children and teens from C.S. Mott Children’s Hospital use their own words and colorful drawings to share their personal experiences with cancer. This diverse collection of patient stories provides insight into the unique lives of these individuals; some are recently diagnosed and undergoing treatment for cancer while others are in remission or have relapsed. These children and teens are honest and perceptive, their stories told with heartfelt emotion.
The book is currently available on Amazon and at the Literati Bookstore and Bookbound Bookstore in Ann Arbor. All of the proceeds received by the University of Michigan Division of Pediatric Hematology/Oncology for this book will be donated: 50% to the Block Out Cancer campaign for pediatric cancer research at the University of Michigan and 50% to the Child and Family Life Program at the University of Michigan C.S. Mott Children’s Hospital.
After dedicating myself to this project for more than a year, I am excited to be able to share these stories.

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Epiphanies at The Examined Life: Reflecting on My Discussion Forum

I wasn’t nervous. Which made me nervous.

Anxiety is supposed to be a good thing because it shows how much you care. When the blood pulsing through your body persists incessantly, your heart taking on a mind of its own. But in anticipation of presenting about my research at The Examined Life conference, I realized that my lack of anxiety wasn’t necessarily a bad thing.

My calmness about leading a discussion of my research in effect reminded me about how much my research has come to define me. What was once merely something I do has now become a part of who I am. An inseparable component that, like my own name or hometown, I have no hesitance to claim and share.

I was fortunate to have engaged individuals, all attending my session for different reasons. Some who knew people with childhood cancer, some aspiring pediatricians, and others eager to implement similar mechanisms of research with other vulnerable populations. It was a smaller, more intimate group of people, which allowed for everyone to contribute to the conversation.

After I presented a brief overview of my project, we discussed some of the ethical considerations of my methods. Everyone then had the chance to encounter my narratives for themselves and to discuss the narrative insight they provided. We reconvened to brainstorm about some of the implications of this research, and even had the chance to watch Zach Sobiech’s music video for his song Clouds that arose from his experiences with osteosarcoma.

Although the time flew by and I had hoped to discuss much more, I was overall happy with how it went. The ethics discussion was tricky because there were so many logistical details that I had to explain, but most importantly, I was able to let the narratives speak for themselves. One woman commended me on my work and said something about how I was like a kid who swallowed an adult, which she meant in the best way possible. She elaborated, explaining how appreciative she was for my efforts and impressed by how mature and well-spoken I was for someone so early in my career. I really appreciated all the  kind words of support; it meant a lot to me.

What I love about sharing my research is that it has always been such an encouraging experience. It pushes me to take a step back from the work that I have been so deeply invested in over the past year, to look upon it anew and remember how this project came to be and why it is, as I believe, so incredibly important. And I am so grateful to have had this opportunity.

Here are the resources that I used for my discussion forum at The Examined Life conference:

Examined Life presentation

Discussion Forum Lesson Plan- Ethics and Methodology

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“The Heart of Medicine”: Published in The Intima, A Journal of Narrative Medicine

This month, my artwork I Will Wear My Heart Upon My Sleeve was published on the front page of The Intima: A Journal of Narrative Medicine! Check it out here:

The Intima, I Will Wear My Heart Upon My Sleeve

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Filed under Miscellaneous Musings, Narrative Medicine Research, Uncategorized