Springtime in the garden of good and angry

This week’s guest blogger is author Meg Wilson, who lives in Maine and ordinarily blogs about the Appalachian Trail. Her middle-grade novel, Crappy New Year, follows Tess Amory's extraordinary new life after losing her father to cancer. Please visit www.megwilsonauthor.com.

Author Meg Wilson

This week’s guest blogger is author Meg Wilson, who lives in Maine and ordinarily blogs about the Appalachian Trail. Her middle-grade novel, Crappy New Year, follows Tess Amory’s extraordinary new life after losing her father to cancer. Please visit www.megwilsonauthor.com.

It’s the day after Easter, yet spring has not fully trumped the bitter cold Maine winter of 2014. Karen’s garden beds were still trapped under April snow just a week ago. But we’re finally blessed with temperatures on the right side of forty. A gentler breeze today will prevent dried leaves from scurrying back under her beloved hydrangeas. I grab a rake and a tarp, and throw them in my car. I will drive to Karen’s and play private gardener to my dearest friend.

She and I had planned to go to the hospital together this morning, to meet with social worker Liza a third time. Liza would lift us both with carefully chosen words, and walk us through guided imagery and some breathing exercises. These are simple comforts I rely on, too. With four months gone on a “year or less” cancer prognosis, Karen’s anxiety is worsening. I am running out of ways to help her. Her weight slipped below one-hundred over the winter. While she used to look merely sick, Karen is now drawing stares, with frightened eyes that appear bigger than her face. Her hair grew back course and spindly. She has stopped eating out, going to movies, being social. The hospital and drug store are her big adventures nowadays. Before too long, a stroll around her gardens will be the most she can manage. I know this. I am preparing for this.  I will make these gardens beautiful.

When I arrive at her house, Karen has already left for the appointment with Liza. Her mother and sister Susan are joining her this time. I am happy for the break from clinicians today. I want to be outside, breathing spring air and listening to the songs of spring birds. Besides, her mom and sister could benefit from a frank chat with Liza. A reality check is in order. Denial has been running the show for a long time now.

To my surprise, I am greeted by her younger sister, Diane, who is playing soccer in the yard with her two little boys. We embrace and trade small talk. I ask how she’s holding up. She doesn’t seem to understand that I’m referring to her big sister’s illness. She answers that the day care back home in Massachusetts is closed, so the boys, ages 6 and 8, are her responsibility today. She chose a trip to Karen’s house for their diversion. My wince is invisible, but it’s there. Karen confided in me, weeks ago, that those boisterous boys are getting to be too much. Today, they’re high on Easter candy – the pastel wrappers fluttering in a basket by the front door. The soccer ball slams off the garage door and into the garden bed that I drag my tarp toward. I don’t hear any spring birds amidst the shouting.

Diane watches me rake crisp, brown leaves from among the tender new hostas, the lamb’s ear, and Karen’s beloved Endless Summer hydrangeas. Strangely, she offers no assistance while the boys play within sight. She tells me that they skied thirty-one times during the winter, thanks to all the snow. She tells me that the boys play soccer year-round, so it’s tough to do everything.  But they manage. While I think about asking for help, Diane asks if there is a spot where the younger boy can dig a hole.

“He’s my digger,” she says. “He loves to dig. I can find him a shovel.”

“Yeah,” the boy offers. “Can I dig there?” He points to the area where Karen’s peonies are finally sprouting, reaching toward that tardy, elusive sun.

“See those little red buds?” I point. “These will be big, beautiful flowers by June. But you can dig if there’s something that died over the winter and we need to take it out.”

“I want to dig. Is this dead?” He points to the tiny hosta spirals.

“Look closely. These are going to be giant, leafy plants pretty soon.”

“Aw, I want something to be dead. Can’t something be dead?”

I cannot answer. Sadness envelops me. Diane, who stands listening to her son, walks off to find him a shovel, just in case. I continue my work, blocking out the trio as Diane urges the older one to get his helmet if he’s going to skateboard in the driveway. I listen for the songbirds. I don’t hear them. I think about Liza doing breathing exercises – right now – with Karen, her sister Susan, and her mother. I need someone to breathe with me right now.

My rake snaps while I’m finishing up the third bed. I yell to Diane playing in the driveway. Can she look in the garage for a replacement rake? A few moments later, she delivers one triumphantly. There are still four flower gardens to go. I have already filled and emptied the tarp a dozen times. I am dirty and breathing hard. I feel like hired help. I wonder why I’m there. Why do I keep coming back when everyone else seems so…oblivious?

Is it because they seem so oblivious?

I want to go home to my own gardens, to my own birds. I’m mad at feeling sorry for myself as I scratch at stubborn ice under the leaves near the back door. The youngest boy finds me there, carrying the shovel that his mother fetched for him.

“Is anything dead yet?” he asks again.

I swallow, I scratch at the leaves. “Nope. Everything survived the winter,” I tell him. “Everything came back.”

In spite of how hard it was. In spite of how hard it continues to be.

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When the cancer journey meets Hollywood

Credit: Vlasta Juricek

Credit: Vlasta Juricek

It is not uncommon to turn on your TV to a new show or movie featuring a character facing a cancer diagnosis. Think of the shows The Big C and Chasing Life or the movies 50/50, The Bucket List, and the now widely famous The Fault in Our Stars. These shows and movies depict cancer diagnoses in many different ways, but what makes some respectable representations of the cancer journey and others “cancersploitation”?

Ilana Horn, author of the article “The Difference Between Cancersploitation and Art—According to a Cancer Survivor,” is no stranger to cancer herself. Horn was diagnosed with breast cancer in 2009, shortly after losing her stepbrother to cancer. She now has her own blog where she writes about topics such as caregiving, doctor-patient communication, and end-of-life issues.

In this article recently published in Time, Horn details the value of cancer-focused cinema and where it can go wrong. She notes that often, TV shows and film will feature a character with cancer simply in order to advance the plot in some way. For example, a character’s diagnosis may change a widely-held perception of an unfavorable character, or the diagnosis may just be there to add drama to already existing story lines about relationships, careers or other parts of the story.

However, Horn praises films like 50/50 and The Fault in Our Stars. She notes that although Hollywood depictions of cancer diagnoses will never be completely accurate, these films treat cancer as a multi-layer issue that affects every part of the characters’ lives. By watching films like this, Horn feels that individuals affected by a cancer diagnosis, as well as their caregivers and loved ones, can find a sense of healing by reflecting on their own journeys.

While reading Horn’s article, I found her perspective to be both unique and important. It’s easy to criticize Hollywood films for their often glorified depictions of cancer, but I agree with Horn in that some films do depict some important aspects of living with cancer. As Horn points out, these TV shows and films may not be completely realistic, but when they really do delve deep into the changes a diagnosis can bring, they prove that cancer is playing a greater role than just a storytelling device.

However, I also believe that everyone’s cancer journey is different. Because of that, people may relate to different shows or movies featuring a character with cancer in different ways, and some may be more or less meaningful depending on the viewer. Often, seeing a film or TV depiction allows people to reflect on their own experiences, proving that the most important story will always be their own.

If you are interested in sharing your experiences with cancer, participate in CSC’s Cancer Experience Registry, the first cancer registry focusing on the emotional and social impacts of a cancer diagnosis.

Posted in Living with Cancer | Leave a comment

What my dad’s melanoma taught me about sun safety

CSC’s Emily Martin, with her father, who is cancer-free today after a melanoma diagnosis nearly three decades ago.

CSC’s Emily Martin, with her father, who is cancer-free today after a melanoma diagnosis nearly three decades ago.

For as long as I have known my father, he has had a large square-shaped scar on his left temple.

Before I was born, he had Stage 3 melanoma on the side of his face as well as on the middle of his back— where he also has a crater-like scar the size of a fist.

Whenever we would go on family vacations to the beach, the scar on his back was always covered by a t-shirt—not because he cared much about people noticing his abnormality, but because he wanted to be sure to limit his skin’s exposure to the sun (melanoma survivors have a greatly increased risk of getting another malignant melanoma). Growing up, if my siblings and I ever got sunburned, we were lectured endlessly about melanoma and forced to hear the details of his cancer story, again and again.

My dad was diagnosed with cancer before I was born. He lived with and overcame cancer before I was born. He started calling himself a cancer survivor before I was born. As a result, I grew up without realizing how big of a deal melanoma was. All I knew was that if I came back from the beach looking a little red, I was in big trouble.

As I got older I learned more about cancer, and today I wear sunscreen every day, always put on sunglasses and insist on checking and double checking every questionable mole at my annual skin exam.

Of course, there are many risk factors for melanoma, basal cell carcinoma and other types of skin cancer. There are certainly people living with skin cancer who spent their summers carefully applying sunscreen and steering clear of tanning beds. However, for many types of skin cancer, the risk factor that you can control the most remains ultraviolet ray (UV) exposure.

A tanning salon in my hometown actually used to offer free tanning sessions to high school students who were cast in the school’s annual highly-regarded 60’s themed musical show. Several of my friends who performed in the show looked forward to this deal every year.

“The lights on the stage really wash you out,” a friend had to explain to me. “So you have to be tan.”

Aside from the ominous point that tanning beds appear strikingly similar to coffins, staying away from them at all costs is important because of how much more powerful (and dangerous) this UV exposure is. Studies have shown that indoor tanning increases a person’s melanoma risk by 74%.

You don’t have to be tan, but you do have to protect yourself in the sun. Follow the CDC’s recommendations for reducing your risk of skin cancer.

Summer is time for fun in the sun, but don’t forget to be safe!

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New video explains immunotherapy treatment options for non-small cell lung cancer (NSCLC)

by Tara Whithington, CAE – SITC Executive Director
Click here to watch the NSCLC Immunotherapy video

Click here to watch the NSCLC Immunotherapy video

What is cancer immunotherapy? How does immunotherapy work to control cancer? Should I consider participating in a cancer immunotherapy clinical trial?

In response to patients’ questions like these, Society for Immunotherapy of Cancer (SITC) just released an animated video explaining the basics of immuno-oncology, and showing how immunotherapy clinical trials are providing new hope for many non-small cell lung cancer (NSCLC) patients.

Cancer immunotherapy is a promising treatment option that harnesses the power of the immune system to recognize and attack cancer cells. Immunotherapy drugs have already received FDA approval for treating specific tumor types such as melanoma, prostate cancer and renal cell carcinoma, and scientists are using immunotherapies against several other types of cancer in clinical trials across the country. One of these diseases is non-small cell lung cancer (NSCLC), the type of cancer accounting for 85%-90% of lung cancer cases in the United States. Scientists have reported some positive results for immunotherapy treatments in NSCLC clinical trials, currently the only avenue for NSCLC patients to receive these drugs.

SITC created the engaging video, Non-small Cell Lung Cancer Immunotherapy: A New Hope™, in response to the growing demand for patient-centered educational resources about cancer immunotherapy treatments. This video offers unbiased, easy to understand explanations of how cancer immunotherapy works, as well as information about clinical trials for patients with NSCLC. The video was produced in collaboration with leading cancer care and support organizations including Cancer Support Community, LUNGevity, Lung Cancer Alliance, Bonnie J. Addario Lung Cancer Foundation, and Association of Community Cancer Centers, and offers hope by empowering patients to make informed treatment decisions that are best for them and their families.

Throughout the planning, writing, and editing stages of video production, SITC consulted with a range of stakeholders including an expert task force of three lung cancer immunotherapists, and two focus groups representing clinical oncologists, nurses, patients, social workers, and patient advocates. The resulting video offers a balanced view of NSCLC immunotherapy options as it equips viewers with the knowledge base they need to ask questions about participating in a clinical trial.

Since the launch of the video, SITC and our partnering organizations have witnessed a very positive response, and we are asking for YOUR help in spreading the message of hope for patients with NSCLC. Please pass the video along to your friends and family, and share the video on your social media networks! Together we can empower patients, raise awareness of promising immunotherapy treatments and promote innovations in cancer immunotherapy research.


Posted in Cancer Treatment, Living with Cancer | 1 Comment

Gray in May – Brain Tumor Awareness

BT_facts_infoThis month you might hear, “Wear Your Gray in May” or see that many of your friends have made their profiles on social media sites gray. This is because May is Brain Tumor Awareness Month, and gray is its color.

The brain and spinal cord make up the Central Nervous System (CNS). Tumors that originate in the brain and spinal cord are referred to as CNS tumors. More than 688,000 people in the United States are living with a primary brain tumor or CNS tumor.

Brain tumors are classified as either benign (non-cancerous) or malignant (cancerous). About 550,000 people in the United States are living with benign tumors and 138,000 are living with malignant tumors.

Brain tumors are also organized as either primary or metastatic. Primary brain tumors originate in the brain, while metastatic brain tumors result from cancers that started somewhere else in the body and metastasized (or spread) to the brain. The most common types of cancers that spread to the brain are breast cancer, lung cancer, colon cancer, and melanoma.

A brain tumor diagnosis can trigger a number of emotions, including fear, loneliness, and anger. It is important to remember that you are not alone and there are many resources available to help you. Through these resources, you can take charge of your experience and gain a sense of empowerment.

If you or a loved one is living with a malignant brain tumor, CSC has a number of free resources to help:

Want to help raise awareness for brain tumors this month? Tweet using the hashtag #TuneIn2GBM and tune in to next week’s episode of Frankly Speaking About Cancer for a special episode on brain tumors.

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