- The Impact of Ruth Bader Ginsburg's Life on the Cancer Community
By Rachel Koonse, LMFT and Miranda Johnson September 21, 2020 This past Friday, September 18, 2020, Justice Ruth Bader Ginsburg died at the age of 87 due to complications from metastatic pancreatic cancer. The “Notorious RBG” – as she came to be affectionately known – was a bold revolutionary. The second woman to sit on the Supreme Court, Ginsburg was a strong advocate for gender equality. Over the course of her 27 years as a Justice, she delivered “some of the Supreme Court’s most influential majority opinions” (Blakemore, 2020). Ginsburg was also one of only 9 women in a class of 500 students studying law at Harvard University. Despite an impeccable professional and academic record, Ginsburg faced barriers towards gaining employment as a woman in a male-dominated field. By 1970, Ginsburg founded The Women’s Rights Law Reporter, the first law journal in the U.S. focusing on gender equality issues, and became the first woman to receive tenure as a professor at Columbia University Law School. She went on to create the ACLU’s Women’s Rights Project, served on the national board of the ACLU, and argued several cases of sex discrimination before the Supreme Court. Ginsburg served for 13 years on the U.S. Court of Appeals before being appointed to the Supreme Court by Bill Clinton in 1993. Throughout her career, she argued for equal citizenship status for men and women, propelled university admission rights for women, fought for rights for women with disabilities, argued against wage discrimination, and supported LGBTQ rights. Ginsburg was impacted by cancer several times throughout her life. Before Ruth Bader graduated from high school, her mother – Celia Bader – died of cancer. While studying at Harvard Law School along with her husband, Marty Ginsburg, Ruth and Marty both learned that he had been diagnosed with testicular cancer. Ruth was Marty’s caregiver as he underwent surgeries and radiation. In a 1993 interview with NPR, Marty said, “So that left Ruth with a 3-year-old child, a fairly sick husband, the law review, classes to attend and feeding me” (Totenberg, 2020). Ginsburg herself was first diagnosed with colon cancer in 1999. In 2009, she was diagnosed with pancreatic cancer. In 2018, she received the news that she had lung cancer. And in 2019, she was diagnosed with a metastatic recurrence of pancreatic cancer. As an organization that provides social and emotional support to people who are impacted by cancer, CSCP finds the toll that cancer had on Ginsburg’s life and on her family to be a sobering reminder of the ever-present need for support when facing a cancer diagnosis. In spite of the profound impact that it had on her and her family, Ginsburg did not allow her cancer experience to define the totality of her life. RBG famously said, “Justice O’Connor told me, ‘Now you do the chemotherapy on Friday because you’ll get over it during the weekend and you can be back in court on Monday.” Ruth Bader Ginsburg’s work was her life’s meaning. In a similar way, CSCP can provide hope, purpose, and meaning amidst a cancer diagnosis. In our support groups, classes, and workshops, our members can be candid about their cancer experience, while also forging ahead towards new horizons, just as RBG did. Works Cited Blakemore, Erin. “Ruth Bader Ginsburg, Supreme Court Justice Since 1993, Dies at 87,” uploaded by History.com, 18 Sept. 2020, http://www.history.com/news/ruth-bader-ginsburg-death. Kinstler, Everett Raymond. Ruth Bader Ginsburg. 1996. National Portrait Gallery, Washington, D.C. https://npg.si.edu/object/npg_NPG.97.37. Ruth Bader Ginsburg Biography- Academy of Achievement. (September 18, 2020). Retrieved September 21, 2020 from https://achievement.org/achiever/ruth-bader-ginsburg/. Totenberg, Nina. “Justice Ruth Bader Ginsburg, Champion of Gender Equality, Dies at 87,” uploaded by NPR, 18 Sept. 2020, https://www.npr.org/2020/09/18/100306972/justice-ruth-bader-ginsburg-champion-of-gender-equality-dies-at-87.
- April 16 Was National Healthcare Decisions Day
By Karen Morin Green, RN Now more than ever, these discussions cannot wait. I encourage everyone to have an end of life conversation with spouses, partners, loved ones, parents, siblings, mature children, and your doctor. - But I’m fighting cancer, focusing on treatment! Why talk about death now, when I feel good, and it’s going so well? As a long time oncology nurse and support group facilitator for those with metastatic disease, I understand you, your family, and your medical providers are all laser focused on treatments and living. I often had patients that complained they actually wanted to talk about death and dying, and discuss and what quality of life means to them, but not only did their families divert or defer these discussion about end of life but their doctors often also avoided the discussion. Today, I write to urge you, even plead with you to HAVE THE TALK! COVID-19, has had unprecedented impact. Now is an excellent time to discuss and plan what would happen if you got this infection. We know that those with heart disease, diabetes or COPD; suppressed immune systems from illness or cancer treatment, and any underlying significant conditions and their family members are at risk. COVID-19 is also attacking young, healthy people. It is in everyone’s best interest to have the best plan you can for all members of the family. None of us know when our time will come and the best time to make plans is when we are healthy and sound mind. We have all looked the other way but the images on television and news stories have sent many to want to reach out take control and make plans. Please: · Do not wait for your doctor to ask or bring up end of life issues. · Be your own advocate! Let your doctor know you want them to be open and honest with you about your illness and prognosis. · Identify your health care proxy and Advanced Health Care Directive by choosing the person you trust to advocate for you. You may not get a warning before you can’t speak for yourself. · Remember, Medicare pays for an end of life discussion; even via “tele-med” calls. · Make sure that your doctors, family, and your advocate know your wishes about all interventions at End of Life. Research has shown that up to three-quarters of treating physicians didn’t know their patients had an Advance Health Care Directive. · If you are elderly or have underlying disease at an advanced stage consider a new tool The National Hospice and Palliative Care Organization has published a new tool it assists with making decisions should you are a family be faced with COVID-19. It factors in age, current symptoms, other diseases and helps determine your likelihood of survival should you contract the virus. It may also get you thinking about your preferences even if you aren’t infected with the coronavirus. Be mindful of COVID-19 specific issues: · Decide whether you want to go to the hospital (with all of the potentially life saving measures) if the COVID-19 disease progresses, potentially isolated from your family; or would you rather remain at home with comfort measures and care. · Understand what it means to go on a ventilator and the potential difficulties of coming off a ventilator. · Discuss with your proxy your wishes about CPR · Check out Prepare for Your Care (https://prepareforyourcare.org/welcome) and it’s new COVID-19 update with downloadable forms and checklists as does CompassionandChoices.org, which also provides free care fact sheets and planning tools and a special COVID-19 add-on sheet (https://compassionandchoices.org/wp-content/uploads/COVID-19-Addendum.pdf). Those who have conversations with their doctors about advanced care planning enjoy increased satisfaction, confidence, control, and influence regarding their care. Patients who talked with families about specific preferences in their end of life care felt less anxiety and fear. These discussions create and sustain trust and comfort. Family members are then able to make difficult decisions with confidence and clarity knowing they have followed your wishes and are grateful and comforted. Every situation is different; make sure you have made lists of passwords and important papers. COVID-19 moves quickly. Not doing anything, not discussing these issues can instantly become an uncorrectable mistake. Don’t wait! Become your own advocate by beginning these conversations now. Frankly discuss your wishes, learn other family members’ wishes, and make sure proxies are identified. Give your doctor a copy of your completed Advance Health Directive. Make sure your doctor has the contact information for your appointed health care agent. All of us want to die peacefully, but we cannot do it alone. If you want some control during these uncertain times it’s UP TO YOU!
- What’s Next for Healthcare Reform?
Cancer Support Community’s services are provided under the framework of a Patient Active concept, developed by our founder, Harold Benjamin. The Patient Active model places individuals at the center of their care, encouraging them to make the best informed healthcare decisions for themselves. To that end, CSC provides a place where people can be empowered by knowledge, strengthened by action, and sustained by community. Additionally, CSC’s Research and Training Institute empirically validates the programs that we offer, and continually seeks feedback from individuals with cancer to refine and improve upon our patient-centered care. CSC advocates on a national level to promote these ideals to ensure that all individuals with cancer can access quality healthcare that includes psychosocial support. Our Cancer Policy Institute takes the following three stances: “access to care for all patients, quality as a central theme, [and] research as a critical priority.” As of late, healthcare reform has been a primary focus for CSC’s Cancer Policy Institute. This post delves into the status of healthcare reform and how to get involved with advocating for cancer patients and their loved ones at a national level. To start, let’s take a look back in time a few weeks ago to see where healthcare reform stood, and then we will explore where healthcare reform is now and how it may play out in the next few months: At the end of July, there were several major senate votes that all but ended the polarized status of the healthcare reform crusade. On July 26th, a repeal and replace bill aimed at terminating Obamacare with no replacement plan was defeated in the senate. This bill fell six votes short of being passed. After the failure of this bill, senate majority leader Mitch McConnell proposed a “skinny repeal” amendment. The “skinny repeal” would essentially preserve Obamacare but modified a few key elements, including the elimination of Obamacare’s “individual mandate,” which taxes uninsured individuals, and disposing of penalties for some businesses that do not offer coverage to their employees. Under this plan, 16 million Americans would lose their insurance, and many more would face significant increases on their premiums. On July 28th, the senate voted against the skinny repeal, which many felt would be the last effort to pursue health care reform in such drastic terms. The senate is now approaching their August recess. Though the failure of the repeal and replace bill as well as the skinny amendment is a major victory for healthcare advocates, there are still potential issues on the horizon. When the senate reconvenes in the Fall, a bipartisan hearing is planned in preparation for September 27th, the day that insurance companies and the federal government sign contracts outlining what will be sold on Obamacare exchanges. The hope is that this bipartisan hearing will drive down premiums as well as provide billions to insurance companies to subsidize individuals on an Obamacare plan. However, at this juncture, the future of healthcare reform is still murky. It is possible for the administration to take away federal subsidies, neglect to enforce the individual mandate, and cut funding for organizations that assist low income individuals with healthcare enrollment. Notably, the CHIP program, which provides coverage to children of low income individuals who are not eligible for Obamacare but also cannot obtain private insurance, is set to run out of funding in September. These funds may very well not be reinstated. Further, an analysis was conducted by the Kaiser Family Foundation that found that insurance agencies are going to be increasing premiums significantly in the next year due to the uncertain tide of healthcare reform. The analysis also found that insurer participation in the Obamacare market will be at an all-time low. So where are we now? Perhaps cautiously optimistic. There have been major victories in recent weeks that indicate that access to affordable care is a value shared by many Americans. However, we must stay vigilant in our pursuit to maintain the availability of quality healthcare for all. To get involved with CSC’s Cancer Policy Institute, you can join our advocacy movement. Once a part of the movement, you will have the opportunity to voice your opinions, participate in research, and receive information about policy initiatives. We believe that no one should face cancer alone, and part of that endeavor involves fighting to continually ensure equal access to affordable healthcare.  Cancer Policy Institute Aims and Positions. (n.d.) Retrieved August 10, 2017, from https://www.cancersupportcommunity.org/cancer-policy-institute-aims-and-positions
- The Power of Art
Research has shown that creating art has many benefits, including promoting healing and improved cognition and mood. Studies have shown that art can benefit those at all phases of life and help those struggling with conditions such as dementia, anxiety, depression, and even cancer. The ability to create art remains even when speech and language ability diminishes. One does not need to be skilled or talented to obtain the beneficial effects of creating art. Rather, it is the creative process itself where the benefit lies. The Benefits Healing: promotes mental, emotional, and physical healing and increases resilience; promotes overall well-being Cognition: improves memory and reasoning; lowers the risk of developing mild cognitive impairment in older adults Mood: provides a way to express emotion and feelings (especially through difficult times); can help put the mind at peace, promotes relaxation, and reduces stress; creates a sense of accomplishment, boosts self-esteem, and promotes social inclusion How to Benefit Take a class or experiment your own with different creative mediums. The Cancer Support Community Pasaadena offers a variety of artistic and creative classes, including watercolor, beading, journaling, knitting, and photography. See our program calendar page for details. References: Secker, J., Loughran, M., Heydinrych K., & Kent L. (2011). Promoting mental well-being and social inclusion through art: evaluation of an arts and mental health project, Arts & Health, 3:1, 51-60, DOI: 10.1080/17533015.2010.541267 The Healing Power of Art. (2017, July). Harvard Health Publishing. Retrieved November 14, 2019, from https://www.health.harvard.edu/mental-health/the-healing-power-of-art Egberg Thyme, K., Sundin, E. C., Wiberg, B., Öster, I., Åström, S., &; Lindh, J. (2009). Individual brief art therapy can be helpful for women with breast cancer : A randomized controlled clinical study. Palliative & Supportive Care, 7(1), 87–95. Five Great Mental Health Benefits of Art. (2017, August 16). Retrieved November 20, 2019 from https://artfromthestreets.org/blogs/news/five-great-mental-health-benefits-of-art
- A Volunteer of Distinction
Fifteen years ago, Catherine Bicknell was drawn to a building adorned with Pink and Silver balloons, and felt compelled to walk inside. Catherine had recently moved to Pasadena from Washington and was looking for a local oncologist to monitor her health following her history with cancer. Little did Catherine know that stepping into CSCP’s office would lead to years of volunteerism with us, and a reputation in which she is known as the “gem” of CSCP, according to one participant. Catherine, who hails from England and had a long career as an architect and professor, was in disbelief when she was first diagnosed with cancer. She felt as though cancer hit the “wrong person at the wrong time,” and her grueling treatment left her feeling well only 5 days out of every 5 weeks by the time that she recuperated from her chemo infusions. Catherine remembers undergoing treatment as a true “endurance test.” During those coveted 5 day periods of wellness, Catherine, a professional photographer, was hired to shoot a documentary book in Butte, Montana. She loaded her car with her dog and photography equipment and drove across Idaho and into Montana. While in Butte, she found herself immersed in creative work, living simply and solely out of her car. On her drive back to Washington, the lingering impact of her time in Butte occupied her mind, and it was only when she got home that she realized that she did not hold a single thought about cancer while away. At this point, Catherine consciously chose to “identify as a photographer, not a cancer patient.” Fast forward a few years, and Catherine found herself stepping into CSCP after being intrigued by the balloons, and once she learned about our organization, wanted to find out how she could volunteer her time. After a period of serving as a front desk volunteer (a job that Catherine felt she could never master due to the inarguably complicated phone system), Catherine began to teach photography classes to CSCP participants. The class was incredibly well-received, with 26 participants attending the first session, and Catherine has continued to teach 2 weekly photography classes at CSCP for the past 14 years. In addition to teaching her classes, Catherine has become a sort of resident photographer at CSCP, creating beautiful canvases that adorn our walls, contributing images for our annual reports, and shooting staff when needed. Catherine has given immensely to CSCP, and yet when speaking to her she communicates a deep gratitude for CSCP and the people that she encounters while here. While Catherine strives to foster her students’ photography skills in her classes, her class is also much more than developing photographic techniques. Catherine shared that her class often “starts with visual stuff, but quickly leads to how [the students] are doing, and how they’re feeling.” All those years ago when shooting the documentary in Butte, Catherine realized that the “visual experience becomes a whole world,” and she endeavors to create a space in her classes where individuals diagnosed with cancer can temporarily leave behind their current reality and enter a new world through photography. Creativity calls for an openness and vulnerability, and Catherine has the gift of establishing a space where participants feel uninhibited in expressing themselves, both through art and through narrating their experiences. Catherine feels that, following her experiences with cancer, the “biggest gift in life [she’s] been given is a second life,” and Catherine uses that gift by giving back to the community at large in remarkable ways. Catherine’s students offered testimony about their experiences with her at CSCP: “I appreciate Catherine’s help with he technology of saving, moving, editing, enhancing, and printing the photos I took on my iPhone. I learned a lot in her class! “ “I have been attending Photography classes at the Cancer Support Center for close to a year. Catherine is always a warm, engaging woman who delights in encouraging the students in the class. Whether the students have more, or less ability, she always directs her comments to point out the positive aspects of the work. She often explains how, with a little manipulation, or altered perspective, the way to improve the photo’s presentation. She is always positive, even in her criticism! And that is a gift that too few people have to share.” “Catherine Bicknell’s photographic workshops, Focus on Fun, has guided and enhanced my photography skills by playing with camera images. Her knowledge has helped bring out my creative juices through group sharing of weekly images. It is just a wonderful fun experience seeing other individual’s shared photos through their eyes. It does not matter what type of camera you own. It is what I see through the viewfinder that really promotes my enthusiastic interest. With sincere appreciate to Catherine!” CSCP is incredibly grateful to Catherine for her years of service and dedication to our organization. We recognized her volunteerism with CSCP at our Anniversary Party on August 26th, where she donated a beautiful new canvas to CSCP, pictured below. Pictured from left: Rachel Koonse, Program Coordinator; Melissa Alcorn, Board and Guild Member; Catherine Bicknell, Laura Wending, Program Director
- Thankfully Simple
It is rare in this complex world that we find answers through profoundly simple actions. When faced with the overwhelming task of contemplating happiness, we often think we will only find true happiness when certain conditions are met (i.e. “I will be happy if…” or “I will be happy when…”). Perhaps some of the most seemingly simple yet compellingly intuitive research of our day surrounds the correlation between happiness and gratitude. As we enter Spring, a season of abundance and newness, let’s take a deep dive into the meaning of gratitude, the research that looks at the connection between gratitude and happiness, and easy ways to incorporate a gratitude practice into your everyday life. What is gratitude? Many of us understand gratitude as the action of expressing thankfulness, as in thanking someone for passing you the salad at the dinner table. But in the scientific community, gratitude is not only a passive action, but an emotional state of appreciation. Dr. Robert Emmons, a preeminent researcher and psychologist, provides helpful insight on gratitude: “Gratitude has been conceptualized as an emotion, a virtue, a moral sentiment, a motive, a coping response, a skill, and an attitude. It is all of these and more. Minimally, gratitude is an emotional response to a gift. It is the appreciation felt after one has been the beneficiary of an altruistic act” (Emmons & Crumpler, 2000). Further, Emmons posits that gratitude consists of two parts, the recognition of the value that we hold from within, and value that is directed towards us from others. In that, we recognize the internal and external manifestations of giving and gratitude. Gratitude and the Research Positive psychology is revolutionary in the way that it perceives of mental health. Traditionally, psychology has embodied a pathological framework. That is, psychology tends to give credence to individual deficits and abnormalities, which are then dealt with through diagnosis and treatment. There is certainly value to this framework, but positive psychology brings necessary information to the table by focusing on individual strengths, resources, and adaptive coping skills. Positive psychology looks at what we are already doing right rather than what is wrong. Multiple positive psychology studies have found correlations between gratitude and happiness, strong interpersonal relationships, a sense of optimism, self-control, and better physical and mental health. Neuroscience has even validated these correlational studies, finding that gratitude triggers areas of the brain associated with morality and virtue. How to incorporate Gratitude into your life: Incorporating gratitude in your life does not need to entail a radical shift in your daily schedule. Many find that a simple 5 minute daily practice is incredibly impactful. The following are some creative ways to implement gratitude in your routine: 1. Create a Gratitude Journal: Each day, write 3 to 5 things that you are grateful for. 2. Write a thank-you note: or text, or email. Express to others that you appreciate them. 3.Gratitude Walk: Take a walk outside, challenging yourself to make note of everything in your environment that you are grateful for. 4. Give: Give to others. Be it a small gift, money to a charity, or volunteering your time, giving to others expresses that you are grateful for them and the beauty that they give to the world. 5. Pause: Take a moment out of your busy day to notice the world around you, and make note of the small things in your surroundings that you are grateful for. 6. Collage: Gather pictures, magazine clippings, and stickers of things you are grateful for and tape or glue them to a piece of paper. Display the collage somewhere that you will see it frequently so that it serves as a visual daily reminder to practice gratitude. 7. Meditate: Reflect on the things you are most grateful in life. Those things may include your family and friends, sentimental material possessions, or even personal struggles that have given rise to meaningful lessons. 8. Gratitude Garden: Write words of gratitude or personal mantras on a piece of paper and bury them deep in the ground. Plant seeds above the paper and see flowers grow from your words of appreciation. There are many more ways to practice gratitude than those on our simple list. So be grateful for that creative brain of yours, and begin to cultivate your own unique gratitude practice. And all of us at CSCP are grateful for you <3
- A Voice for Change
Nohemi Gomez was at a labor march in the Mission District of San Francisco when she began to feel faint, sweating profusely. She had been experiencing weeks of fatigue, but passed it off as related to her busy college schedule. However, this time the fatigue was so intense that it left her immobilized. She smudged sage over her body and silently prayed, willing her body to refuel. She continued to march. Nohemi was used to pushing forward, even in the midst of pain and challenge. The daughter of two parents who immigrated from Mexico, Nohemi’s childhood was characterized by integrating the cultural influences of her Mexican heritage while growing up in Southern California. Nohemi matured quickly as her father had a stroke in 2002 followed by two brain surgeries. These medical experiences changed her father and shifted the dynamics in her family. Nohemi, independent and responsible, took on many caregiving duties for her father while also pursuing her own goals with vigor. She enrolled in University of San Francisco without even being aware of San Francisco was. Nohemi dove in headfirst, majoring in biology in hopes of becoming a doctor one day because she didn’t want girls like her “to one day feel like their dad went into the hospital one way and came out another person.” That is how Nohemi operates: using her own life experiences to compel positive change for others. Nohemi excelled in college, ultimately changing her major to Latino/a and Africana studies. Towards the tail end of her college career, Nohemi began experiencing odd symptoms: night sweats, high fevers, and weight and hair loss. In one instance, Nohemi fell downstairs while taking out the trash; a truly disconcerting experience. Still, it wasn’t until her mother came to visit that Nohemi got a dose of perspective. Seeing Nohemi’s jaundiced face and high fever, her mother said “You are not ok. Let’s go to the hospital.” True to form, Nohemi tried to stand her ground, saying that her symptoms were just due to a busy schedule. Further, going to hospitals signaled something incredibly grave to Nohemi; images of her father’s medical experience coming to mind. Nevertheless, Nohemi’s mother persisted, she was admitted to the hospital, and doctors ordered a battery of tests. It became immediately apparent that her white blood cell count was critically low, prompting the doctors to suspect HIV or meningitis. Nohemi stayed in the hospital, in complete stupor, for two days. Finally, a hemotologist came in her room and said that she was either experiencing a viral infection or leukemia. He proceeded to ask if she knew anything about leukemia, to which she replied, “I watched ‘A Walk to Remember’- and she died.” Upon receiving this news, Nohemi remembers “I wasn’t crying- there was no emotion- it was just an exchange.” Nohemi was transferred to UCSF two days later and received a bone marrow biopsy. The results yielded the news that it was indeed leukemia. Nohemi asked if she could be transferred to a hospital closer to home to receive treatment, but the doctor advised that she not risk a transfer as her survival would be tenuous without treatment in the transfer process. The doctor left the room. Nohemi occupied a large hospital room, all to herself, with the most beautiful view of San Francisco. In that moment, Nohemi cried. Following four vigorous rounds of chemotherapy, radiation, a bone marrow transplant that left her hospitalized for almost two months, and Graft Versus Host Disease, Nohemi is now 5 years into her recovery. An active member of CSCP’s young adult group, Nohemi imparts wisdom from her time post-cancer and offers genuine support and care for others in the room. Other group members are awed by her eloquence and passion for helping those in need. Nohemi also regularly attends CSCP’s yoga classes, utilizing the practice to fuel her body and mind. Though incredibly thankful for her medical care, Nohemi voices disparities in the health care system as a young woman of color. From lack of representation in medical research to higher incidence rates of cancer in certain communities, Nohemi feels that many under-resourced populations do not have access to quality medical care. Further, Nohemi calls for more attunement and compassion when treating young adults with cancer. In one instance, mere moments after receiving her diagnosis, a fertility specialist came into Nohemi’s hospital room, speaking of an egg retrieval process that would take months to complete. Meanwhile, Nohemi needed to start treatment immediately or she would face her death. As such, pursuing fertility treatments was not even an option for her. Having just received an acute and life threatening diagnosis, Nohemi did not have the headspace to contemplate fertility treatments and grieve the fact that she ultimately would not be able to do them. Though she recognizes that the specialist had the best of intentions and was simply performing her job, Nohemi believes that these types of situations are rampant and signal a need for more training in compassionate and culturally-informed medical care. In all, Nohemi advocates for more representation of people of color in medical journals and pamphlets, more education, and more dialog with marginalized communities. She believes that change will only begin to occur when we all take responsibility, and when we all can participate in this dialog. If you want to be a part of the dialog and compel positive change in cancer care, visit Cancer Support Community’s Policy and Advocacy page. The Cancer Policy Institute (CPI) connects advocates and policy experts to “ensure that the voices of cancer patients and their loved ones play a central role in federal and state legislative, regulatory, and executive policy making.” Humble and grounded, Nohemi has simple goals for her future: “I see myself growing into the person I want to be: knowing my worth in relationships, my career, my goals. I’m a very curious human; my happiness exists inside of me and does not need to be validated by having a house, career, or money. I want to make my family and ancestors proud, listening to myself every step of the way.”
- Return To Wellness
Perhaps one of the most unexpected emotional twists and turns associated with a cancer diagnosis is the period of time when active treatment is done. Where you are navigating the space between ill and well and thinking about the inevitable question of “what’s next?”, but still undoubtedly and significantly impacted by cancer. The period when normal life stressors once again are on the front burner, but you are still managing treatment side effects, residual fatigue, and emotional depletion. There is hope when looking towards the future, but an immediate return to the “old you” may not be in the cards the way that you may have anticipated. Return to Wellness is an 8 week recovery-oriented program designed for breast cancer survivors. It bridges the gap between completion of treatment and moving towards survivorship. The program is intended for women who are between 6 weeks and 24 months out from active treatment. Return to Wellness offers several unique components that aim to serve emotional needs, spark preventative and sustainable health measures, and foster camaraderie. A small group of women gather together for four hours a week. On Tuesdays, they participate in a support group led by a licensed mental health clinician, followed by a strength training class. On Thursdays, they attend an educational workshop (topics range from nutrition, to sexuality and body image, to developing an exercise routine) and end the evening with a yoga class. The different elements of the program are in place to attend to multiple aspects of health and well-being. Often, by the end of the 8 week series, the women are often inextricably bonded. CSCP is in the midst of a Return to Wellness series and we are already compiling a roster for the next offering. If you are interested in participating in a future Return to Wellness group, please call CSCP at (626) 796-1083.
- 70,000 Stories
Olivia Gaines was being treated in the pediatric unit one night because the adult unit was full. “I remember being in pain and I was up at 2 or 3 am and I heard a kid crying. Why was this kid with cancer crying? I didn’t want to think about it.” Discreetly, she began walking down the hall towards the cries, averting nurses as they roamed the unit. When she reached the kid’s room, she opened Spotify on her phone and serendipitously, the song “Dancing in the Moonlight” played. And in the dead of night, in her backless hospital gown, she “started dancing in the moonlight with this kid and he stopped crying.” She wondered “how many more kids are crying right now and just need a little song?” Olivia Gaines is an iconoclast, in every sense of the word. Upon her high school graduation, she donned a Gap sweatshirt and announced to the Ivy-league bound graduating class that she would be taking a gap year. She co-led a backpacking crew on an 18 day outdoor trip through the Adirondack Mountains. She studied art history in Italy and got accredited in dog sled management in Canada. She became fluent in Spanish in three months, worked as a housekeeper in Hawaii, and ran a half marathon. She helped to start the TEDx conference series at her college and is passionate about “breaking the mold to break expectations.” When recounting her diverse life experiences, she says “I wish I could get this in ten seconds.” Nearly impossible, with regards to all that she accomplished within the first 20 years of her life and considering what happened next. Olivia’s symptoms began when she was leading a backpacking trip. “It started slowly, at first. I was beating myself up because I started to be behind everybody, and everyone would keep walking…I was so tired.” Quickly following the trip, she experienced debilitating pain in her neck that hindered movement to the point that it was difficult to open a book at college. In the school cafeteria “I couldn’t use a fork to feed myself and all these people just walked by… and I wondered ‘Would I be that kind of person to walk by if I saw someone in this kind of pain?’ People just didn’t know how to deal with it. No one really did. And there was one person who would cut my food and feed me, and I thought I couldn’t do this for the whole semester.” Olivia ended up discontinuing college during her sophomore year, dedicating her time towards investigating her declining health through consultation with several medical professionals, ranging from general practitioners, to an upper cervical specialist, to ER doctors, to neurologists, chiropractors, and university health center physicians. The Rx was always the same: rest, take pain meds, and come back in two weeks. Following a bout of significant abnormal bleeding, Olivia’s mother urged her to go to urgent care. Within 24 hours Olivia was diagnosed with Acute Myeloid Leukemia and began chemotherapy. “It took me almost dying to be diagnosed. I remember wondering ‘Who am I going to be?’ This was a defining moment in my life. I was concerned about who I would turn into. Maybe I’m resilient, but what if I gave up on living?” Following a year and a half of relentless treatments where Olivia was often in the hospital for periods of three and a half months, she remembers “I lost a sense of imagination and being able to have a vision. And when you lose vision, you perish. So it was a lot of staying in the bed and wondering why I was still here. I did not have belief that things would change. That was a hard place because that’s what I feared when I first got the diagnosis. And I thought, ‘Well, I got this far, now I am ready to go.’” She remembers being fatigued to the point that when she would walk to the bathroom, the physical exertion would tire her. She would nap, and then wake up and realize that a day passed. She felt all “senses of power being taken away. Life was interrupted at a stage when I was growing into the person I wanted to be. And all the sudden, I felt like I wouldn’t have time to become the person I wanted to be, so why even try?” Though unique in its own right, Olivia’s story is representational of the cancer experience of young adults. This story, one of the 70,000 stories of young adults diagnosed with cancer yearly in the U.S. alone, reminds us of a growing need to develop supportive care practices in medical and psychosocial communities that attend to the unique needs of young adults facing cancer. She identified many issues that, though not entirely exclusive to the young adult population, are certainly preeminent or exacerbated in this life stage due to a cancer diagnosis. To name a few: 1. Access issues. Olivia was only made aware of young adult support services in her treating hospital nearly a year after her treatment began. There is already a scarcity of resources for young adult cancer patients, and even then, those resources are not necessarily accessible or known to young adults. 2. Gaining job skills and learning about worker’s rights after cancer. Olivia felt that she went from “a young professional to professionally sick.” The job market is already competitive, and due to her youth, lack of job skills and experience, and education cut short, it is even more difficult to navigate the working world. 3. Issues with triaging and assessing needs. When being triaged for care, Olivia often felt that providers relied on superficial clues (i.e. she was young, ambulant, and looked fairly healthy) that she worried would preclude her from receiving the care she truly needed. She was compelled to bring her mom with her to every appointment because she felt she received better care when her mom was there to advocate for her. 4. Information and support with dating and fertility. Already a taboo topic, dating and fertility are pressing concerns for young adults facing cancer. Olivia had and continues to have several questions surrounding early menopause and fertility that she feels were not adequately addressed while she was in treatment. 5. Forum to connect with other young adult cancer patients. Olivia knew that there are young adults who have cancer, but she found it incredibly hard to find and connect with them. Though the young adult cancer patient population is relatively small in the world of cancer, it still exists, and it can be incredibly beneficial to connect with others who share a piece of your circumstances. 6. Supportive care following treatment. Many support services are only available while you are in the midst of treatment, and there tends to be a dearth of support for the period of time directly following treatment. In Olivia’s case, that period was one of the darkest stages of her recovery. More patient information about long term treatment side effects, health risks, and emotional support is needed. Research validates Olivia’s experience, citing issues such as isolation, continuity of care, grappling with mortality, body image issues, decreased independence and reliance on caregivers, worries about the future, finances, and disruption of work or higher education as critical areas of concern for young adults. Further, there is a gap in the research addressing young adults as most oncology literature surrounds adult populations. Often, young adults are grouped with pediatric or adult groups in treatment and research, which further obscures our understanding of the needs of this population. Olivia fortunately had the support of an around the clock caregiver (her mom cared and advocated for her all the while holding down a full time job), financial stability and insurance to pursue effective treatments, and an inherent resourcefulness that enabled her to find supportive venues, like Cancer Support Community. Olivia also had the support of her church, college, and high school alma mater through the blood drives that they conducted, which also raised awareness for national bone marrow associations. She remembers slowly coming out of the fog she experienced during her recovery by recognizing “little steps, small decisions, even if it was just one day being grateful for something.” A nurse gave her CSC Pasadena’s calendar and, though she was reluctant to come at first, she quickly became grateful that she simply had a place to go. After participating in CSCP’s services, her potential became tangible opportunities. She landed a part time job with the gym that offers a strength training class at CSCP. After receiving an email about a writing competition, she submitted a letter to young cancer patients and won $5,000. She entered a step study she was introduced to at CSC and increased her steps from 1,000 to 7,000 – 8,000 steps a day in six short weeks. She reignited her passion for writing by attending a weekly journaling and poetry class (read Olivia’s blog here). What ultimately shifted for her? “There was the support group… there were the phone calls…receiving messages of impact when I wasn’t expecting it… having a space away from the hospital that gets it… those little moments of remembering who I was.” When reflecting on her experience at CSCP, she says “So many people are traveling on the surface where you cannot afford to do that here. These places are created to restore the sacred. You help give everyone peace when there’s a place taking care of you on a soul level. That’s what’s going to help you come alive again. That’s why it’s beautiful that this place exists.” Though Olivia’s story has an encouraging ending, she humbly recognizes that other young adults with cancer may not have access to some of the resources that she did. More investment in addressing issues such as accurately assessing for needs (both medical and psychological), linking patients to resources, and attending to the unique emotional concerns of young adults is essential in providing comprehensive cancer care. To that end, CSCP will be offering a new young adult support group starting in April 2018 to provide a place for young adults facing cancer to connect, reflect on treatment, recovery, and survivorship, and gain hope. To those who are just at the beginning stages of getting a cancer diagnosis, Olivia eloquently says “You can be more than be sick. You’re here. You’re worthy. Keep the vision of who you want to be alive.” To find resources for young adults facing cancer, call Cancer Support Community’s helpline at (888) 793-9355 or follow this link.
- Being your own Valentine
With the month of love in full swing, many are focused on love they give outwardly towards friends, family members, and partners. Rarely do we gift ourselves with a Valentine's day treat, a metaphorical hug, or words of compassion. And yet, self-love is integral in maintaining physical and mental health. Especially during cancer, when your body and mind experiences trauma and is challenged beyond the limits you knew you were capable of, self-love is paramount. And yet, self-love and self-care are all too often overlooked. While cultivating love and meaningful relationships is undoubtedly important, self-care is equally so. Here are some ways that you can be your own best Valentine throughout the month of February and beyond: 1. Do something you love It may seem that there is little time for enjoyment amidst the everyday bustle of life, but there is always 5 minutes on a weekday to take a walk around the block, 30 minutes in the evenings to read your favorite book, or an hour on the weekend to watch your favorite show on Netflix. And if there truly is no time, perhaps taking something off of the to-do list is warranted. Make time to do something you love, no matter how big or small. 2. Focus on the present Many of us are control freaks by nature, but as we all know, much is out of our control. Perseverating on the future and/or the past will do little to change where we are right now. However, savoring the moment will free us from shackling ourselves to what was and what could be. 3. Unplug We live in a world that is full of near-constant stimulation: social media, work demands, family obligations, never-ending traffic… the list goes on. Meaning that it becomes even more important to take a step outside of the business of it all. That may look like meditating for a few minutes at your work desk, limiting use of technology during certain hours, or creating work/life boundaries so that your professional obligations don’t impede upon your home life. 4. Exercise The benefits of exercise are indisputable. Integrate exercise into your life in meaningful ways: if you enjoy biking, bike. If you enjoy dancing, go do a Zumba class. If you enjoy hiking, check out a new trail. Even though the idea of exercise may trigger feelings of resistance, fear, and ambivalence, give it a try and work at your speed. Following the workout, all of your feel-good hormones will spike and give your physical and emotional being a much-needed boost. 5. Check In Rarely do we pause to ask ourselves how we are really feeling (see distractions/ lack of time theory alluded to in item 3). As such, we can be detached from our emotional state. Further, we often “push through” to evade or “get over” difficult emotions. But part of self-love is loving ourselves in any feeling state; the good, the bad, and the ugly. Be genuine in your feelings of sadness, happiness, fear, excitement, and love; embracing those emotions completely and without judgment. When we give ourselves permission to feel fully, we are practicing love for ourselves in one of the deepest, most intimate ways possible. So treat yourself to some chocolate, a heart-shaped card, and a little self-love this month, Valentine. You’ll be happy you did.