After 13 surgeries, all for different conditions (e.g., brain surgery, C-sections, appendectomy, car accident), Emily has learned a thing or two about pre- and post-surgery preparation, asking questions, types of anesthesia, and caregiver support. With her 3rdupcoming C-section, Emily shares the steps and un/expected moments she experienced and reminds listeners that “Patients are not standard. Different people respond differently to different drugs” in discussing her adverse reaction to anesthesia. Surgical procedures and recovery processes have also changed over time in healthcare, as Emily recalls the speedy and fairly easy recovery from a recent sinus surgery compared to sinus surgery from a decade ago. In providing insights, Emily suggests asking the surgeon any and all questions, calling the surgeon’s office with additional questions, finding patient narratives to understand others’ experiences, and mental preparation techniques such as meditation. The podcast ends with advice for your caregiver so they can be effective in their caregiving role.
Having had multiple roles in healthcare (i.e., employee, patient representative, researcher, teaching associate, standardized patient) and as a current Stage IV cancer survivor, Ariane provides listeners with a myriad of experiences about how she has learned to navigate the liminal spaces in the U.S. healthcare system. With a hopeful attitude, Ariana suggests not to affix fault and blame when faced with a diagnosis. She suggests bringing someone with you to appointments, finishing necessary paperwork, completing a living will and assigning a surrogate, meditation and/or prayer, and finding others to connect with. The most pragmatic advice Ariane has for listeners, “don’t accept what the system gives you….ask for what you want and don’t give up until you get it!”
Ten years after being diagnosed with gestational diabetes, Melanie faced another diagnosis, Type 2 diabetes, and recounts the symptoms: thirst, frequent urination, dry skin, forgetfulness, occasional blurred vision and slow-healing wounds. As she states, “…those things are such a normal part of aging, we don’t think to connect those to diabetes until you get a diagnosis”. Melanie also addresses a common stereotype of diabetes, obesity, and shares the story of a physician who assumed Melanie (who weighs 135 lbs.) weighed 400 lbs. based on her blood sugar levels and hypertension diagnosis. Regarding diet, Melanie informs us that “healthy” foods such as granola, dried fruit, and refined sugars: bread, pasta, and rice are, in fact, not good for controlling diabetes. With a genetic predisposition to having diabetes, Melanie chose to manage her condition through diet, exercise, and lowering her stress levels, addressing her diabetes holistically. Over the year she learned what works for one person doesn’t work for others—you need to figure out what works for you.
On Valentine’s Day in 2007, Kim was told that not only did she have cancer but that she may never sing again. Over the course of two years, Kim had multiple surgeries and radioactive iodine to eradicate what numerous health care professionals referred to as “the good cancer”. Afflicting mostly young (<50 yo) women, thyroid cancer is predicted to decrease in 2019, but death rates are expected to increase by 5.3% for this relatively unknown and unspoken disease. Kim notes, “I feel like an outsider in the world of cancer survivors because my cancer was so different, the treatment was so different…” from social constructions of ‘cancer’. Kim reminds people of the ThyCA (Thyroid Cancer Survivor’s Association) mantra, “Get your neck checked”. Tips for others? Kim suggests showing empathy and compassion toward others when delivering a diagnosis—a good rule of thumb for all health care professionals. For others with thyroid cancer, Kim recommends finding an otolaryngologist, a subspecialty surgeon that deals with conditions of the head and neck. Most importantly, find a surgeon that you feel comfortable with, support from others with thyroid cancer
In this visceral podcast about body image, social critique, and self-acceptance, Courtney Fuller takes the listener on a journey across her body’s map to the center where she experienced love, loss, illness, birth, and identity re-birth. Courtney details the personal impact that years of social media had on the negative construction of her own self-image. After giving birth and describing the change to her body, Courtney states, “…there’s the great part of having these new little ones in your life and there’s the other part of losing a part of your self and changing your identity…”. After a class prompt when students were asked, “Is there any part of your body that you really identify with?”, Courtney was moved to create a poem and image (see insert) she entitled, The Center of the Map. The statement Courtney asks us to consider, “Really think about your body’s story…rather than trying to copy and paste yourself…Each body tells its own story”. Suggestions include being aware of what you say to others (e.g., not complementing someone who has lost weight) including comments on social media, and practicing mindfulness.
The Center of the Map
Smooth, pale skin marked heavily by freckles and moles,
my mother calls them “beauty marks.”
Well, I must be beautiful because
you can play connect the dots for miles
across the landscape of my body.
A particular one, right next to my belly button,
sits as a plot point on the map of my life.
It stands out in bold font, like the capital city—
the dot that marks the spot where my journey begins.
As a child, belly baby soft, ballet pink,
belly cradled in warmth,
my insides supple and open,
my body pushing the boundaries as all children do.
I heed my mother’s advice to “pull in my belly.”
I practice making the shapes of hills and valleys,
concave and convex shapes in the mirror,
shapes controlling how my insides tuck neatly into my ribcage
or burst out into space.
As others feed me compliments on my sleek torso,
I fill it with diet pills—supplementing
an emptiness that extends to points beyond my middle.
but I am lean, embracing this journey to thin,
and I hold it all in tight.
I even add another landmark
that punctures the terrain of my abdomen,
a silver rounded piercing,
a beacon that shimmers May through August,
signaling days of half-shirts and a lemon yellow string bikini.
The landscape of my body glows with a luster—hot and exposed
and like a cheap roadside attraction, it draws him in.
My eyes watching his eyes travel from north to south along the route of my torso.
My eyes waiting for his eyes to return north.
His eyes bound only southward, past my middle.
Suddenly, my topography changes—
I feel the stretching of boundaries as
my hands float over the vast expanse of this once familiar region.
My fingertips pressing in to feel a shift in direction.
The flat and solid transforms into the curves of hills so foreign to me,
of swollen breasts and thighs
of an ever-bloated, ever-rounded center.
This space, which was once only mine, I now share.
We grow; we expand together
and I simply give up holding and flexing.
I let go.
Belly soft and sagging like a deflated balloon,
transforming into the perfect landing place to cradle her.
This flat-tire, pillow-like suppleness becomes only a momentary side trip
as I cover that old, familiar territory that was once sucked in,
once tightly held together.
The roadmap of my torso shrinks back,
but the landscape is forever changed.
I carry these stretch marks both east and west of the middle,
like ripples in barren sand,
but my marriage,
my marriage I leave behind.
Hands full, baggage heavy, but
faintly, in the distance plays a familiar song from my childhood
each strum of his guitar vibrates across the country—
carrying me over miles of scars,
over decades of this wilderness of flesh and bone,
over recognizable points on my map
that I once thought were beyond reach
And this man, this song, touches me across borders and bridges—
an intersection of voice and memories
he navigates his way back to me.
We still see each other as children
covered now in a vast network of scars and wrinkles.
He embraces my flawed torso
and whispers that he’s loved me since I was a child,
asks if I will have his children
But en route to create our own
our passage is blocked by cancer.
Here lies a tear in the map of our world
A melted, ridge of a scar
inhabits the space between
stretch marks east and west of the middle.
We cannot repair or rewrite this map
or move highways so that our bodies
can intersect sooner.
All that is left
is to simply embrace the peaks and valleys
of this place and each other.
The baggage is heavy
but we carry on without looking back.
“It is a humbling experience going through cancer…[and] it’s a lonely business being a cancer patient.” In this podcast on surviving stage 4 cancer, Jay Baglia shares what it was like to receive a life-altering diagnosis and how he lived through chemotherapy, created a blog site detailing his experiences, and developed a deep appreciation for his friends, family, and clinical team. For those of us who know someone who is sick or living with cancer, Jay recommends finding a way to reach out. Phrases such as “I’m thinking of you” and “I’m sorry this is happening to you” provided him comfort. For listeners looking for resources, Jay suggests the book, How to Be a Friend to a Friend Who’s Sick and Cancer in Two Voices.
Julie-Ann knows what it is like to live with a perpetual condition. Diagnosed at 18 months with cerebral palsy (CP), Julie-Ann shares her heartfelt stories as a patient in the healthcare system and the surprising encounters she’s had with strangers about her CP. As a mother to a child with a perpetual condition (epilepsy), Julie-Ann confronts the implicit biases of others while being aware of how her past experiences with CP have shaped her current attitude as a parent. Julie-Ann offers the following advice to clinicians, “…the patient is probably more of an expert on that particular disability than you [clinician] are if it is not your expertise”. And, she reminds all of us to be aware of our assumptions when talking to someone with a disability. Julie-Ann stresses the importance of “…engaging children about the need to understand difference and accept that bodies are different and move through the world differently…“
When Dr. Marleah Dean Kruzel learned she carries the BRCA (breast cancer) gene and has an 84% chance of developing breast cancer at some point in her life, it was difficult news to hear but not a complete shock. After watching her mother live with breast cancer, Marleah decided to have genetic testing. With a positive BRCA diagnosis, Marleah chose to increase her surveillance—one of four options for a positive genetic test result. She lives by her mother’s mantra, “You make the best decisions you can with the information you have at that time” and advises listeners to not be afraid of the uncertainty; you have to embrace it. “Knowledge is power”.
Dr. Jennifer Morey Hawkins begins the podcast with the unforgettable words told to her by the emergency room doctor, “You’re having a miscarriage…go home and take care of yourself”. Jennifer shares her heartbreaking story of having an ectopic pregnancy (1:50 pregnancies are ectopic) and the stories of other women she interviewed in her research. For listeners, Jennifer suggests developing a relationship with your OB-GYN, asking questions about unexplained symptoms such as pain, addressing grief, and confiding in a friend or co-worker. For practitioners, Jennifer encourages empathy and an acute awareness of how bad news is delivered, especially the news of a miscarriage.