Anne Katz

From Darkness Into Light .

doi: 10.1188/16.ONF.7-8 I write this on a very dark morning at 6 am, here in my office in Canada, just above the 49th parallel. Winter is coming but this year, thanks to El Nino, we have no snow at the midpoint of November. My office is likely the only one lit in the whole building; I work in an ambulatory cancer center, and nothing or nobody stirs here until 7 am most days. There are 41 days until the winter solstice on December 21, and each day grows perceptibly shorter until I find myself in the dark on my way to and from work. I do not like these short days, but there is January and F e b r u a r y t o look forward to, when the dark starts to recede, ever so slowly. When this issue reaches your mailboxes, I hope you will notice the change in the length and quality of the light wherever you are. However, this is also a time of joy, where many of us find ways to celebrate life, family, and good fortune. The Christmas decorations will go up soon (and it seems sooner every year), and all over the United States and Canada, houses and stores will shimmer and glow with colorful baubles and twinkling lights. Our family celebrates Chanukah, and, for eight nights, we will light candles, starting with just one lonely flicker and ending with the menorah ablaze with all eight candles glowing. Some of our Hindu, Sikh, Jain, and Buddhist friends and colleagues celebrate Diwali around this time with bright colors and fireworks lighting up the dark sky. I find myself introspective at this time of year. Perhaps it is the long hours of darkness that lend themselves to deep thoughts, or perhaps it is the end of one year and the start of another that prompts me to reflect on past achievements and plans for what comes next. I have been thinking a lot about two friends that I lost to cancer in 2015—one in the cold days of early January and the other as spring first started to show herself between the piles of dirty snow and ice. They had both lived good lives, productive and loving lives, but lives too short for their friends and families, and their passing has left a space in my life that echoes with their voices and wise words. I do not make New Year’s resolutions as a rule, but I have to admit that there is something about the prospect of starting again with a 12page calendar of promise and hope open on my desk. How will I fill the days and weeks and months? What projects will I complete? Two new books started in 2015 are at the top of the list. What new ones will I dream up? My husband has a milestone birthday six weeks into the new year, and I have seen my friends and colleagues take stock and make significant life changes based on reaching that age. What will that mean to me, other than being married to an “older” man? The political landscape stands on the brink of change too. In Canada, we recently elected a new government Change is as inevitable as the beginning of a new year. Health care is always evolving, and there are new discoveries that will be made in the upcoming year that will change the lives of our patients and their families.

The More Things Change, the More They Stay the Same—Or Do They?

This is the first of a retrospective series in 2013 celebrating 40 years of the Oncology Nursing Forum. Each feature will focus on a single cancer and discuss the changes to the diagnosis and treatment of the disease since the 1970s.

Couples and cancer.

D uring the past decade, as a sexuality counselor at a large regional cancer center, I have heard many emotions expressed during counseling sessions. I have witnessed the vulnerability of men as those whose physical size suggests strength and power crumble in the face of the fallout from cancer. I have seen physically fragile women draw from a well of strength and overcome functional impairment that would bring many of us to our knees. I have observed, with no small degree of amazement, couples young and old overcome significant odds to grow closer and stronger despite the toll that cancer and its treatment take on them. I have learned what intimacy truly means—not as a euphemism for sexual activity, but the heart-to-heart connection between two people who have seen the worst of themselves and yet, in the eyes of the other, only kindness and love reflected back. But there are times, not often, when my breath is taken away by the words of an angry spouse or a belligerent patient, and they remind me to think about the pain that same voice must cause to those against whom their feelings are directed. This week, the husband of a patient called me to ask why I had told his wife that I wanted to see them together. I patiently explained that sexual problems are never fixed by just one of the couple attending and that this is a couple’s issue and will only be solved by the two of them together. His response was an assault to my ears: “My wife is the cancer survivor and I am the cancer victim!” I have played that statement over and over in my mind since that phone call. I recognized immediately that the word victim pushes a lot of buttons for me. I worked at a community HIV/AIDS clinic in the 1980s and 1990s. A lot of talk in the media at the time was about “innocent victims,” usually children and recipients of tainted blood transfusions or blood products (yet another value-laden term), and an implication that everyone else—predominately gay men and injection drug users—was not innocent and somehow deserving of that terrible fate. I argued with reporters about their use of I have observed, with no small degree of amazement, couples young and old overcome significant odds to grow closer and stronger despite the toll that cancer and its treatment take on them. Couples and Cancer

Clear as Glass

Beginning with the first issue of 2016, the Oncology Nursing Forum (ONF) will join many other journals in publishing the contribution of each of the listed authors to the article. Why has this taken us so long? In part, this is an editorial decision, and I have always thought that nurses are honest and would not include anyone on a manuscript who had not contributed in a meaningful way to the writing of the manuscript. That belief has not changed.

If it looks like a duck and quacks like a duck

Be suspicious of emails soliciting papers from you if you do not know the editor who is requesting the article. If the message is effusively complimentary and offers rapid turnaround times for publication, be more suspicious.

The Trouble With Teen and Young Adult Cancer Care.

ONF, 42(4), 327–328. doi: 10.1188/15.ONF.327-328 For the past two years, I have been immersed in the writing of two books—This Should Not Be Happening: Young Adults With Cancer and Meeting the Need for Psychosocial Care in Young Adults With Cancer (Katz, 2014, 2015). In the preparation of these two manuscripts, I read everything ever written about cancer in these populations. The experience proved to be a somewhat frustrating endeavor, with more information and evidence missing than available. Adolescence is a time of great physical and psychological growth and spans the time from puberty until age 18 years. Young adulthood is defined as occurring between the ages of 19 and 35 years; however, some regard the upper limit as age 39 years. Development continues in this age group, with multiple significant milestones to be accomplished. A number of challenges exist with these definitions, including lack of consensus on the upper and lower limits and the broad age range encompassing many developmental milestones and psychosocial issues. In reading the literature on these two life stages, how individuals with cancer negotiate the cancer system, and how oncology care providers treat adolescents and young adults with cancer, it became abundantly clear to me that a paucity of research exists, including descriptive studies and very few intervention studies. The challenges related to sexuality and body image changes are barely described, and essentially no interventions have been proposed or evaluated in this domain. Some information exists about fertility preservation, but it mostly describes how we are not doing a good job of informing our young patients about the risks to fertility from treatment or referring them for fertility preservation services. We also have some preliminary descriptive data on how these young people parent their children during and after cancer. Some early studies exist on the return to school and work. These are just four of the developmental milestones that should be achieved during adolescence and young adulthood—defining one’s sexual identity, starting a family, going to school, and creating a career—and they are all potentially and significantly interrupted by cancer. I was honored to present a 90-minute plenary session at the 2015 Oncology Nursing Society Congress on the topic of meeting the psychosocial needs of adolescents and young adults with cancer, and I received excellent feedback from some members of the audience. Afterward, one nurse said to me, “I’ve been working in this area for more than 10 years, and your presentation made me realize how much I don’t know.” This is concerning. How can you work with adolescents and young adults and not understand the unique needs of this population and act to fill the gaps? Many nurses end up caring for adolescents and young adults with cancer in pediatric or adult settings by default, not because they had a specific interest in caring for this population. If you do not understand the unique needs of adolescents and young adults, you risk alienating your patient through ignorance—and alienation is the enemy of trust and communication. In North America, we are behind our colleagues in the United Kingdom and Australia when it comes to caring for adolescents and young adults with cancer—far behind. The first hospital units specifically designed for teens were opened more than 20 years ago in the United Kingdom, and it is only now that we are seeing similar units in the United States. Adolescents and young adults with cancer have specific and unique needs that are often not met by pediatric or adult units. Think about a typical adolescent or young adult and his or her internal clock—awake for the first time at 10:30 am and still awake and active at 1 am. How well does that fit with the pediatric patients or older adults? When their friends are able to come to visit, it is usually not during

The last taboo

ONF, 41(5), 455. doi: 10.1188/14.ONF.455 N ursing has addressed many taboo topics—death and dying, fertility, and most recently sexuality (but more work still needs to be done!). However, there remains one topic that is barely mentioned despite overwhelming evidence that it plays an important role in both the development of cancer as well as cancer recurrence: obesity. That topic affects so many of our patients, their family members and friends, and their oncology nurses too! An abstract presented at the 2014 American Society of Clinical Oncology meeting (Neff, 2014) showed that weight management remains a topic that is seldom talked about with patients. In that study of 244 gynecologic cancer survivors, 50% were clinically obese (body mass index greater than 30); however, only 20% received any counseling about weight management. In contrast, 80% of those who smoked received information about smoking cessation! Women in the study “strongly expected” to be counseled about healthy behaviors (weight management in addition to smoking), and no one reported that they would have been offended by counseling about weight management. So what is the problem here? We know that many nurses are, themselves, overweight or obese (Han, Trinkoff, Storr, & Geiger-Brown, 2011). Is that a reason for not talking to our patients about the need for them to lose weight? Are we afraid that we will not be taken seriously if we have a problem with weight? A study of public perception of overweight or obese physicians suggests that patients do judge their healthcare providers and are less likely to follow their medical advice compared to normal-weight physicians (Puhl, Gold, Luedicke, & DePierre, 2013). Would a similar study about nurses have the same findings? Administrators are paying attention to this. The head of the National Health Service in the United Kingdom told 700,000 healthcare providers in that system to lose weight in order to set a good example for their patients (Prynne, 2014). So how do we talk about something that many of us struggle with? This is a sensitive topic, and one that needs to be handled with care and understanding. We don’t want to make our patients feel guilty about something, particularly when faced with a life-threatening diagnosis. But the evidence is clear that being obese leads to poorer outcomes. And our patients want nothing more than good outcomes! We are highly influential in our patients’ lives and we don’t want to threaten the relationship we have with them. So obesity is the 300-pound gorilla in the room. We need to be able to talk about this without the perception of judgment; patients who feel judged about their weight are more likely to try to lose weight but less likely to succeed (Gudzune, Bennett, Cooper, & Bleich, 2014). Those of us who are a healthy weight need to take extra care to be compassionate and to avoid appearing judgmental. I think this is an opportunity to share with patients that weight is a struggle for many of us and that we understand and appreciate how hard it is. Making lifestyle changes, in the form of healthy eating, exercise, smoking cessation, etc., is difficult at best and at times feels impossible. There is no harm in our patients knowing that we have the same challenges as they do and that we are not telling them to “do as I say rather than as I do.” If we can talk about previously taboo topics with grace and sensitivity, then we should be able to talk about other sensitive topics that ultimately will improve quality and quantity of life. This is one area where many of us can truthfully say, “I know what your experience is like. I’ve been there, too.” References

The Personification of Cancer

Facilitating a session recently at the C4YW conference in Orlando, FL, moved me in ways that I am still processing. This conference is for women who were diagnosed with breast cancer prior to the age of 45, and these survivors are encouraged to return to the conference for education, support, and fellowship for as long as they want. They can bring family members or friends with them and the meeting rooms and hallways are filled with laughter and tears.

Change equals opportunity.

9:30 AM – 9:45 AM Welcome & Board Introductions Sean Whaley, CNIAHU President Program Overview George V. Duczak, Program Moderator 9:45 AM – 11:00 AM Facing ACA Realities – Real World Solutions Guest Panel A Panel of 3 Leading Agencies in the Liz Smith, Assurance Agency, LTD Chicago Area Will Share Recommendations Michael Wojcik, The Horton Group, Inc. They Provide to Their Clients Linda Tarpo, Gallagher Benefit Services, Inc. 11:00 AM – 11:30 AM Illinois State Marketplace Jennifer Koehler, Chief of Staff of Legislative Affairs Representatives from the State DOI Charged Brian Gorman, Director of Outreach & Consumer Ed With Responsibilities for Implementing the State Laura Jaskierski, Senior Health Policy Advisor Exchanges and/or Marketplace 11:30 AM – 12:00 PM The Illinois Insurance Marketplace Michele Oshman, DOI Chief Deputy Director

What if Life Is Not Worth Living

I tend to become reflective as the end of each year approaches. Thinking about what I managed to achieve during the past 12 months, what I have left undone, and how to try to make the next 12 months better occupies my mind as I drive to and from work or while on my treadmill. The year that is almost over has been a particularly turbulent one in part because of the news about celebrities ending their lives. I certainly enjoyed Anthony Bourdains books and TV shows and admired his apparent love of the good things in life. Of course, we can never know the truest parts of anothers heart, and his suicide in a hotel in France left many shaken.