This week, I have the special honor of introducing you to Kathy McGonigal, a certified oncology nurse. Not only is Kathy the Breast Care and GI Coordinator at Fox Chase Cancer Center Partner hospital, Pottstown Memorial Medical Center, she is the founder of Hands Unite to Give Strength, (H.U.G.S.), a program she developed to support cancer patients emotionally and financially.
Be well, Bob
“I am a daughter, sister, wife, mother and grandmother. I am also an oncology certified nurse and sometimes I think that is what defines me.” Kathy McGonigal
Having spent the last 20 years as a certified oncology nurse, I believe I have first hand knowledge of the impact of cancer. Not just on the individual diagnosed, but everyone around them – family, friends, nurses, and doctors. And one of the things I’ve learned is that everyone finds and draws strength from different sources. But the reality is that the only other person who understands what it’s like to be diagnosed with cancer, is another cancer survivor.
This understanding was the catalyst for Hands Unite to Give Strength (HUGS).
Our mission is to create a community of cancer survivors who come together to help each other sustain hopefulness and optimism when there is uncertainty.
H.U.G.S. is a place where patients and survivors can share their story, find additional strength, and support one another. It is home to real examples of the ups and downs and the wins and losses associated with cancer. The stories inspire perseverance, strength, and courage. They bring life’s real joys and priorities into perspective.
Through H.U.G.S., we have accomplished our goal of supporting and contributing to the cancer community in several ways. First, our site is a place to read the inspiring stories of cancer survivors. These generous people have been kind enough to let others into their lives during their most challenging times. They have shared their deepest fears and their greatest accomplishments. The beauty of the stories is they aren’t just for other cancer patients, they resonate with family members, caregivers, friends, and complete strangers. While the theme is cancer, the message is about living the fullest life.
Secondly, we have designed unique hats and headscarves for patients going through chemotherapy. Everyone who has shared their story has also donated a piece of personal fabric that was meaningful to them during their cancer treatment. We take that fabric and turn it into “patches” with that survivor’s name embroidered on it. Each hat/headscarf we make has one of these patches sewn onto it. We hope that when you wear one of these garments, you can connect with the strength of survivors who came before you.
And finally, we wanted to find a way to further support the cancer community at large. We have found and been connected to other groups and organizations who are doing amazing work supporting patients, survivors, and researchers. As a result we have started the H.U.G.S. Fund.
A portion of all the proceeds from the sale of hats and headscarves will go toward this fund. We will then use this money to make donations and contributions to other organizations that are making a difference.
If you or anyone you know would like to share their story, please contact us via our website www.hugsforstrength.com or via email at email@example.com. Whether you’ve been newly diagnosed, are in the middle of treatment or in remission, we think there are many people who will be able to connect with and draw strength from your experience.
Every so often, I learn that one of our patients is making a difference in the lives of others. Today, I have the honor to re-introduce you to Margaret Zuccotti (a guest blogger last year). A former teacher and avid reader, Margaret launched the Louise S. Mauran Book Fund at Fox Chase to provide supportive books to cancer patients with families of their own. She values every moment she can read with her children and hopes that her project will help others as they cope with their disease.
Be well, Bob
As parents, we often find ourselves having difficult and sometimes awkward discussions with our children about growing up. The conversations cover a wide range of topics, and it is almost always impossible to have all the answers. Sometimes, just knowing how to respond to the initial questions is a struggle. How much should we tell them? How much do they really want to know? Do we lay out all the details or just avoid information altogether? It is hard to gauge how much information to share with young children.
Sharing the news of a cancer diagnosis may be the toughest of all those conversations. While divulging all the details of a diagnosis may, at first, seem frightening, being honest is of the utmost importance. If you don’t tell the truth about your situation, your child may create a scenario which is bigger and more awful than the reality of what you are dealing with.
There is a new fund at Fox Chase Cancer Center to help parents and caregivers deal with challenging cancer conversations. The books in the Louise S. Mauran Book Fund at Fox Chase will provide parents wtih a healthy starting point for discussing cancer. There are six titles now available to any family at Fox Chase, free of charge, who is receiving treatment. The books touch on a variety of topics related to cancer treatments such as hair loss, fatigue, appointments, surgery and sadness. Many of the books remind children that they can’t “catch” cancer or cause a loved one to get cancer. Most importantly, the books emphasize that talking about worries and fears regarding cancer can be helpful to everyone.
I started the fund because I want to help young children as they cope with a parent’s cancer diagnosis. I hope that these children will see that while cancer treatment will affect life at home, it will not change how much we love them. Mothers and fathers try so hard to maintain the normal routine while juggling the many aspects of cancer. Books given to families through the Louise S. Mauran Book Fund will hopefully ease that burden.
The fund is just beginning to touch the lives of patients at Fox Chase. The professionals in the Department of Social Work will hand out the books to patients upon request. It is our hope that the doctors, nurses and staff at Fox Chase will refer patients to the social workers who will present the books to their patients. I want the stories to help patients manage this crummy situation a little better so that they can focus on other things that matter in life.
Margaret Mauran Zuccotti, M.Ed.
Diagnosed Stage IV Breast Cancer, 2006
Robert Burger, MD, Director, Women’s Cancer Center at Fox Chase Cancer Center
Hearing that you have cancer is one of the most life-changing pieces of news you can receive. You will suddenly have a list of decisions to make, from where to go for care to what course of treatment you feel most comfortable pursuing. Perhaps one of the most challenging decisions, however, will be how to discuss your cancer diagnosis with your child. New research shows that 18 percent of newly diagnosed cancer patients are parents to one or more minor children. With numbers like this, Fox Chase knew it was essential to provide resources to help families navigate this new phase of life. I’ve invited Luanne Chynoweth, Director of Social Work Services at Fox Chase Cancer Center, to introduce you to some of the resources we provide for patients, as well as some tips on talking to your child about cancer.
‘Life can change in a second. Social workers are here to help.’
In Social Work Services, we have a motto: ‘Life can change in a second. Social workers are here to help.’ And how quickly life changes after learning you have cancer. When you are the parent of a young child, many thoughts and emotions arise: You worry about what and how much to tell your child, and how he or she will react. You feel vulnerable and scared of how the disease will affect your parenting, and you may even be angry this is something with which your family has to cope.
Along with eight other social workers, it’s my job to look past the physical care of the individual patient (your doctors have that covered!) and focus on these psycho-social aspects of cancer – how you feel about being diagnosed with cancer and how those who love you feel about it.
To provide an outlet for your emotions, Fox Chase offers individual and family support services, such as a six-week support group for cancer patients who are parents of children. Mothers and fathers in this weekly group generally range from mid 30s to early 50s, and their children, ages 7 to 12. (More information on Kids’ Night Out)
Children meet in a separate room from their parents to participate in games and activities designed to let them express their feelings. As for the patients and parents, I have two core missions within the group: First, to give them a space to air their fears and joys as well as build a network of other people who are experiencing similar issues; and secondly, to educate them and arm them with tips to navigate this new facet of parenting.
The StrongTogether community is an excellent example of the type of community I hope to provide cancer patients through our support groups. As for the education component, I’d like to briefly share some of my essential tips for parents struggling with communicating with their child:
Of course, it is easy to provide these suggestions, but putting them into practice will be a work in progress. Social Work Services is here to guide you through each step – every up and down.
During my 20 years at Fox Chase, I’ve learned a lot about the power of the human spirit in the face of tremendous hardship. I’ve met countless families going through this difficult period after a parent’s diagnosis and have seen them come together in truly inspiring ways. Whether you have just been diagnosed with cancer or are in the later stages of care, I encourage you to take advantage of our support resources. Because your life may have changed in a second, but your family’s love is forever.
All the best,
Director of Social Work Services
To provide a vehicle for patients and their families to communicate with friends and loved ones during a hospital stay or outpatient treatment, Fox Chase offers an online service called CarePages – a free, private and personalized web site. On CarePages, a patient or caregiver can post an update, share photos, and collect supportive messages from family and friends. In addition, there is an option to connect with bloggers who have been through a cancer experience, and to learn about healthcare issues through a monthly newsletter.
Patients who have created a CarePages site have said that it gives them peace of mind knowing that the people who care about them are being informed of their progress. For some, the act of writing itself can be therapeutic. And it’s a great feeling to read supportive messages from those who care about you and to know that you’re not alone.
In July of 2008, when I was 29 years old, I was busy working as a physician assistant for an oncology group in Scranton, PA. I normally ran three to five miles a day for exercise, and had run several races including a marathon in 2006, but noticed that I was becoming short of breath on the hills. I was also getting extremely tired after working all day at the office.
I was in shock. When you work with cancer patients every day you never think that it can happen to you.
Everything moved very quickly after that. I had an appointment with Dr. Robert Emmons of the Fox Chase/Temple Bone-Marrow Transplant Program a few days later. He told me that I needed to start chemotherapy immediately and would need a stem cell transplant. I had several months of high dose chemotherapy, and after my sister donated her stem cells, I had the transplant on December 26, 2008.
Recovery from the transplant was very slow and I felt as if I would never feel good again. I had problems with graft vs. host disease, which caused severe diarrhea, nausea, and lack of appetite. As a result, I lost 25 pounds. Throughout my recovery, my husband and family were so supportive and Dr. Emmons and his physician assistant Lisa were wonderful. They encouraged me the whole time and told me that I would get “back to normal,” even if it was a slow process.
During my procedures and healing, I relied on the Care Pages website to help me communicate with my friends and family. It’s such a wonderful service. While I was in the hospital, I put out an update every day of what was going on and how I was feeling. When I returned home, I was able to give everyone information on my health status. There is even a place on Care Pages to upload pictures, a feature that my family who live far from us really appreciated. My family and friends were able to send me encouraging messages on the website.
Care Pages kept me connected with people, and I will always appreciate it.
Eventually, I started to feel better, gained some weight back, and started exercising again. Today I am jogging again, hiking with my dog, and mountain biking. I feel great, like my old self. I’m going back to work in January. Life is good again!
Denial and Other Coping Strategies
Dealing psychologically with a cancer diagnosis is a challenge for anyone, and as individuals, we respond in different ways. At Fox Chase, we have both a Psychosocial and Behavioral Medicine Program and a Behavioral Research Core Facility to study the ways in which patients cope with cancer, and to offer tools to help. Below is an excerpt from an article on Denial by Suzanne Miller PhD, director of these programs that appears in the current issue of Coping with Cancer magazine. In it, she helps us separate healthy coping mechanisms from unhealthy ones, and gives advice for managing the stress of living with cancer. If you have any questions for Dr. Miller on dealing with the psychological challenges of cancer, please feel free to submit them here, or contact her office through Fox Chase Cancer Center at 215-728-6900.
Denial can be good.
As one of the psyche’s primary defense mechanisms, denial is a natural way of distracting from or selectively editing out a painful reality. There are times when denial is a useful strategy that allows people in overwhelming life situations to keep on going and still deal with their diagnosis.
It might be useful, for example, to deny the worst case scenarios and focus on the fact that as many as 95 percent of early stage cancers are manageable, that there are good treatments and skilled practitioners, and that new treatments are being developed every day. Some might call this maintaining an optimistic perspective.
So then, how do we know whether our denial is healthy or not?
Healthy denial involves being able to acknowledge the diagnosis, communicate with our family, discuss a plan with our health care team, and, then, having processed it, move on to other life tasks. While it might look to others that we’re in denial, what we’re really doing is “blunting” the impact of the diagnosis so that it has the least psychological impact on our life and our psyche. This is actually a positive way to deal with the challenges of needed medical procedures, office visits, and other interventions.
Unhealthy denial, on the other hand, runs the gamut from an individual refusing to acknowledge that there is anything wrong, to the person who is slowly taking it in but refusing to take any action, rationalizing that there is time, there are no symptoms, and there are more important things in life to address right now.
For caregivers, it’s important to know whether a loved one who has been recently diagnosed is adhering to physician recommendations. If she has discussed the situation with her health care team, made her disease management decisions, and has still decided to go ahead with an overseas vacation for example, she is likely engaging in a healthy form of denial – allowing a distraction, engaging in her life, and being optimistic in a reasonable way.
Time can be the key to understanding whether denial is healthy or not. When we’ve just been hit with unexpected news about our health, it’s okay to take time to accept and understand it. Only then are we equipped to hear the options and make the best personal choices around our situation.
But for some, a serious diagnosis is such a shock to our self image and sense of vulnerability, that we need support to bridge the mental gap between thinking of ourselves as healthy, and yet acknowledging we are ill. With this type of denial, a caregiver can help the individual get through the coping process, step by step, to help the survivor regain a sense of control over his or her life:
In the case of cancer, we never know if the initial diagnosis is fully correct, or how it will play out in our specific case. Part of the psychic challenge is learning to cope with uncertainty. But with the help of loved ones, health professionals and other support systems, we can feel more in control of our options and our futures. And it is this sense of control that helps improve our quality of life and avoid an ongoing need for denial.
Suzanne M. Miller, PhD