One day last week, I came home from work and spent the evening relaxing until my fiancé came home (he’s a chef so he came home about 6 hours after me)…I was just sitting on the couch watching something on Netflix when he walked in the door with a totally annoyed, borderline angry look on his face. I assumed maybe he had had a bad day at work, but instead he proceeded to scold me for leaving my keys in the lock of the front door. “Luckily we live in a safe building but you can’t do that Clarissa, you have to pay more attention!” My honest response: “I literally had no idea I had done it and had 100% remembered bringing them in with me, sorry!”
Tag Archives: cancer advocacy
In 2015, I wrote an article for Cancer Knowledge Network about the founding of the #gyncsm Community in 2013. (https://cancerkn.com/a-twitter-community-for-those-impacted-by-gynecologic-cancer-is-born-and-grows/). #Gyncsm is a Twitter community for those impacted by gynecologic cancers – gynecologic cancer survivors, patient advocates, caregivers, researchers and health care providers. As we look forward to 2018, the community continues to grow and find ways to collaborate.
When we founded the #gyncsm community in 2013, Christina Lizaso (@btrfly12) and I (@womenofteal) were pleased to have Rick Boulay, MD (@journeycancer), Don Dizon, MD (@drdonsdizon), MJ Markham, MD (@DrMarkham ), Matthew Katz, MD, (@subatomicdoc) and Dr. Ann Becker-Schutte (@DrBeckerSchutte) join us in this endeavor. Due to other professional commitments, Dr. Dizon left his role as a monthly chat moderator in 2015 but along with Tamika Felder, OCRFA, SGO and Foundation for Women’s Cancer he continues to provide support to our community. We were pleased to have Shannon Westin, MD (@ShannonWestin) join us as our new monthly chat moderator in December of 2015.
Recently, there have been several news pieces written about the deadliest pediatric brain tumor, diffuse intrinsic pontine glioma or DIPG for short. Several articles have specifically been run in the Washington Post with the latest appearing on August 21, 2017. The piece by Petula Dvorak, title above, shares the story of Melany Knott and her 12-year-old daughter Kaisy. Kaisy, who lives in a rural area in Maryland, has opted to travel to Monterey Mexico for treatment rather than remain in the Washington Metropolitan area, or any of the other large pediatric facilities stateside within a few hours drive. Within a twenty-mile radius in the Metro DC area sit two major clinical treatment centers with well-known neuro oncologists that have treated a significant number of children with DIPG. Children’s National Medical Center (CNMC) and the National Institutes of Health (NIH). Unfortunately, I am personally familiar with CNMC, NIH and the clinicians and researchers at both institutions as my own daughter Alexis was treated in each facility before she died of DIPG in January 14, 2011. The clinicians and researchers at both locations are top notch. In the case of Kaisy’s treatment, despite the proximity of these two clinical options, she will travel thousands of miles away to a foreign country at great expense (noted in the article at $33,000.00 for each round of therapy) to obtain treatment.
Childhood Cancer: Changing the Rules of Engagement for Hope
Recently, I found myself drawn to author Malcolm Gladwell’s works. The latest book that caught my attention is David and Goliath: Underdogs, Misfits and the Art of Battling Giants. In the beginning of the book, Gladwell recounts the epic battle between the seemingly meek shepherd David and the giant Goliath, who was adorned in armor from head to toe, and accompanied by an aide carrying several weapons for use in the battle. Following Gladwell’s description of the battle, which we know was devastatingly and decisively won by David, he then deconstructs this ancient story and shifts the reader’s perspective dramatically. Rather than simply the triumph of an underdog over impossible odds, Gladwell believes that the more important lesson learned is that David created new rules for engagement. Victory it seemed depended upon overcoming insanity. Gladwell argues that Goliath, and all those gathered to observe the giant’s anticipated victory, expected David to engage him at close range with a handheld weapon, thus playing right into the giant’s strengths. Instead, David utilized a destructive weapon with precision, surprise and deadly force and slayed the giant. Accordingly, David’s victory was not at all miraculous; rather it was a result of his understanding that he had to approach the challenge and the problem differently and decisively to gain victory. Continue reading
A cancer diagnosis, the treatment process, and the transition from cancer patient to cancer survivor brings a host of challenging changes with which AYAs need to deal. In the midst of these challenging changes, AYAs are trying to grow up. This combination of changes and transitions makes it critical for parents and guardians to be aware of how important communication is, and how necessary it is to consider the needs of AYAs, as well as what will be most beneficial to AYAs’ development, when communicating.
“Is telling your story advocacy?” – it is a question we have raised before in this CKN Patient Advocacy Blog. This question has prompted a series of blogs profiling organizations that promote sharing one’s cancer narrative as a way to improve care for others.
Blue Faery: The Adrienne Wilson Liver Cancer Association is a nonprofit corporation whose mission is to prevent, treat and cure primary liver cancer, specifically Hepatocellular Carcinoma (HCC), through research, education and advocacy.
The founder is Andrea J. Wilson, and, like many patient advocates, she has her own story.
Andrea was only 22 when she became the legal guardian of her 8-year-old sister Adrienne. She navigated the joys and challenges of being both sister and parent to her beloved Adrienne who called her “Sissy.” But when Adrienne was diagnosed with HCC at 15, they both were catapulted into the foreign and confusing world of cancer. Andrea was shocked by how little information they were given, how limited the treatment options were, and how scarce patient support resources were. “We had no access to anything,” she remembers, “records, information, support – we were on our own.”
One year after Adrienne’s death, Andrea found herself drowning in a pool of grief. She thought volunteering for a liver cancer organization would help her. To her surprise, there was not a single charity devoted to fighting HCC in the United States. With little experience but lots of passion, she founded Blue Faery. The incorporation date of December 19, 2002, which is determined by the state, marked the eighth anniversary of Andrea receiving custody of Adrienne.
In addition to its work in developing patient education resources and encouraging research, it has a mandate for patient advocacy. Among its goals is to facilitate contact among patients with Hepatocellular Carcinoma, their families and healthcare providers for the purposes of support, exchange of knowledge and participation in clinical trials. Also, it offers the Adrienne Wilson Spirit Award (AWSA) for HCC patients “who share Adrienne’s spirit, strength and courage” – those that advocate for themselves as well as others.
But Andrea and Blue Faery go beyond recognizing patient advocates. They work at forming them. Via their online survey, patients are invited to tell their story for Blue Faery’s cancer patient advocacy ebook. Since cancer patients face many of the same issues, Andrea is working with current patients, survivors and caregivers to create guidelines to help newly diagnosed cancer patients. True stories will be used to illustrate specific points (e.g., get a second opinion). Though Andrea is creating the book, she feels it is written by patients for patients. Andrea’s favorite question to ask is, “What is the #1 thing you wish you had known about your illness/treatment that you want other patients to know?”
Andrea is taking on another challenge this year: educating the public on the causes, symptoms, treatment options and prevention of HCC by sharing Adrienne’s story in detail. On May 15, Andrea is introducing her unpublished memoir Better Off Bald: A Life in 147 Days as a video series and podcast. Andrea will tell the story in real time the way it happened to her and Adrienne 16 years ago. For example, Day 1 is May 16, 2001 and that episode will air on May 16, 2017. The serialized nonfiction podcast and video series will run until October 16, 2017.
Since Blue Faery was founded 14 years ago, Andrea has seen how patient connection with each other is the tinder that lights the fires of advocacy and change. In addition to the patient advocacy ebook and podcast/video series, Blue Faery is launching its online patient forum for HCC patients, survivors and caregivers this fall. You can sign up now by going to http://www.healthunlocked.com/bluefaerylivercancer/
Linking families together helps them underscore their common needs and aspirations. Once patients and families are in dialogue, advocacy arises as a natural next step. According to Andrea, “Numbers don’t cause change; personal narratives do. In the end, we all become stories.”
Adrienne would be so proud.
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her colorectal cancer.