Blogging, a journal of experience

Amy Brock is the author of Tata Wars, a blog about her journey with breast cancer

Amy Brock is the author of Tata Wars, a blog about her journey with breast cancer

After I was initially diagnosed with infiltrating (invasive) breast cancer, I began searching out information. I mean, I had to think about it. I had to find out more, right? The doctor’s appointments were scheduled quickly, but it was still going to be days and weeks before I really knew about my treatment options. I would go to the breast surgeon, who would send me to the oncologist, who would run tests all before even talking to me about my treatment options. There was all that time…to think, to question, to search.

Like most people wanting to find out more, before I even know what to ask, I began searching the Internet. The factual sites were helpful in explaining what the doctor’s large Latin words meant, but the best options to cope with cancer and the impeding side effects should be left to the experts. And while experts about treatment were my doctors, the experts about living with cancer were the individuals in the cancer fight.

The more I read other cancer blogs the more I began finding ideas to help prevent side effects and for potential inspiration. The blogs are full of heartache, strength and advice. Each person was willing to share what worked and did not work for them. My cancer experience was in full motion and I found that it was similar, yet different, from others. Everyone’s battle with cancer is unique. Everyone’s experience is their own. Who knows? I might help someone.

I was full of experiences, cancer had no problem providing them, but determining my blog name or concept was honestly one of the most challenging things. I am a child born in the 70s, so Star Wars is awesome! Hence the inspiration for my blog…I mean I was essentially a Jedi going to fight the evil cancer. I was determined to share my saga, Jedi training tips, Jedi battles. I believe that if I only inspire or help one person going through cancer, then it was worth it!

As a young girl I had written in a diary, I had those thoughts and feelings penned down under lock and key. Now I was sharing one of my most challenging life experiences with the world. The blog was like I unlocked the dairy and flipped open the pages for anyone to read. Instead of writing about a crush on some boy, I was sharing how I managed crazy side effects while still being a mom to two young children.

Over the past year I have gone through chemotherapy, surgeries, radiation and hormone therapy. It has been a whirlwind. If I sat down and tried to recall all of the things that happened, I do not think I could. There are times I will look back on blog posts and think did that really happen, did I really do that, and oh yeah, I forgot about that. The blog has become a personal journal, a memory holder of the past year.

While the original goal of the blog was to share my experiences with others, I gained so much more. I wanted a way to help someone else, to provide tips and a way to keep on finding humor in the craziness of cancer. I now have the option to look back at myself and see all of the things I have endured and survived and realized how much I have grown and learned during my cancer fight. The blog became more than a way to hopefully help others; it helped me.

Cancer survivor Amy Brock was diagnosed with invasive breast cancer at 38. She has gone through chemotherapy, radiation, surgery, hormone therapy and other procedures since 2013. Amy began writing about her experiences as a way to help others on her blog, Tata Wars. Amy holds a BS in Organizational Management, BS in Information Technology and a MPH in Human Sexuality. Her MPH background has been a beneficial resource through her cancer experience.

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Clinical pathways in cancer care

The number of cancer survivors in the United States continues to increase. Concurrently, the focus of the U.S. health care system is shifting towards the value of care patients receive. To us in the cancer community, this means focusing on improving the quality of cancer care while also reining in the cost of care.

This issue is taking on increased significance. The National Cancer Institute estimates that medical costs for cancer were $125 billion in 2010, and that costs are projected to increase 39% by 2020, to a total of $173 billion per year. As a society we need to contend with the rising cost of care and make sure all cancer survivors will have access to the high quality cancer care they need.

As a result, new strategies are changing the way cancer care is delivered and paid for by Medicare and private health insurance plans. These strategies are generally well intentioned and aim to manage cost, but often lack transparency about how they are developed, what quality outcomes will be measured and what incentives they create for health care providers.

One example of a cancer payment system is “clinical pathways.” A clinical pathway is a plan of care the health care team is encouraged to follow when making treatment recommendations. Most clinical pathways are based on the results of clinical research and are therefore evidence-based treatment recommendations.

Government programs like Medicare and Medicaid as well as commercial insurance plans are increasingly looking to clinical pathways in an attempt to standardize cancer care in order to reduce costs and improve the quality of that care.

The Cancer Support Community has published a position paper on the use of cost-containment measures which includes clinical pathways. In terms of clinical pathways in particular, we feel that:

  1. Clinical pathways should be based on evidence.
  2. Clinical pathways should not interfere with the ability of the health care team to provide personalized medicine.
  3. Data used for determining clinical pathways should be transparent, to both the health care team and patients.
  4. Patients should be informed of all options available and the risks and benefits associated with each, including medical, psychosocial and financial side effects.
  5. Patients should be informed of financial or other incentives to the health care team for following clinical pathways.
  6. Social and emotional support, including distress screening and care planning should be a fundamental part of all comprehensive, quality cancer care regardless of the clinical pathway and especially when the health care team is receiving reimbursement for care management.

If you or a loved one has cancer, it is important to be educated and empowered when having discussions with your care team about treatment decisions. In addition to the points above, keep in mind these key points during your conversations:

  • Specifically ask to discuss multiple treatment options if they are available – options that are both on and off pathways.
  • For each treatment option ask:
    • What is the evidence supporting the treatment?
    • Does the treatment option meet my goals of therapy for medical effectiveness, side effects and quality of life?
    • What is the overall cost of each treatment option to both me and my insurance provider?
    • What is the financial incentive for the provider to follow a particular treatment plan?
    • Request a cancer care plan that includes social and emotional support, including distress screening and follow up care, if needed, as part of your care expectations.

Again, it is critical that people with cancer are empowered to be partners in treatment decision making. For more information about tools to help with these discussions, the Cancer Support Community has created Open to Options, a treatment decision counseling program designed to help you create a personalized list of questions to discuss with your health care team. For more information about Open to Options, please visit www.cancersupportcommunity.org/open2options or call 1-888-793-9355.

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Staying healthy in the summer

Rocco enjoying the summer sun with his CSC frisbee

Rocco enjoying the summer sun with his CSC frisbee

Summer is a season that many people associate with being outdoors. Lying out by the pool or on the beach, taking long walks, going for a run, gardening, and grilling outdoors are just some leisurely activities that people do in the summer. However, it is important to remember that there are health risks associated with these activities and amid all of the fun, it is important to take precautions to help you and your family stay safe.

Here are some tips to help you stay healthy this summer:

  • For many, an even tan is a must have summer accessory. As you lie outside remember to stay in the shade as much as possible and protect your skin by using sunscreen with an SPF of at least 30 or by wearing protective clothing such as hats.  The UV rays of the sun can cause sunburn and damage your skin, which can increase your risk of developing skin cancer. If you have recently undergone cancer treatment you should be particularly careful to limit direct sun exposure. Talk with your doctor about ways to protect your skin from the summer rays.
  • Swimming, gardening, walking and running outdoors are great ways to stay active during the warm summer months. However it is recommended that all people avoid physical activity between the hours of 12pm-4pm, which is usually the hottest part of the day and when the sun has the highest concentration of UV rays. If you are currently in treatment, it is important to talk with your doctor before starting a new exercise routine. For more information on exercise visit our Exercise During Treatment page.
  • When getting ready for your summer cookout, food preparation is especially important if you are in active treatment. Some cancer treatments often cause a temporarily compromised immune system, which makes people more prone to infection and food-borne illnesses. The following are some tips to help prevent you from getting sick:
    • Avoid eating or touching undercooked meat, chicken, eggs and seafood
    • Wash fruits and vegetables well before eating
    • Wash your hands before cooking and eating
    • If you cut yourself, clean the cut well and apply antiseptic
    • The heat of the summer increases the risk for dehydration, be sure to drink plenty of fluids throughout the day
    • For more tips to help manage the most common side effects of cancer treatment, check out our Frankly Speaking About Cancer (FSAC): Treatments & Side Effects book

The summer can be an enjoyable season. Just be sure to be mindful of your health and to take precautions to ensure safety. Let us know how you will stay healthy this summer by posting a comment below.

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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.

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