Mary Ellen Shands is this year’s Barbara Frederick Award recipient, an award that is usually made at our annual signature fundraiser, Breakfast with Friends; however, given the health crisis, this year it was made at a Zoom staff happy hour.
Before she retired on March 31, 2020, Mary Ellen Shands sat down with us to talk about her 25-year history with Cancer Lifeline.
When did you first get involved with CL?
In the early 90’s I was first asked to provide an in-service presentation for the Lifeline Volunteers on the grieving process. That led to an offer to join the staff in 1995 because the Family Support Program was growing rapidly, and Ellen Zahlis needed help with Kids/Parents Group and Family Meetings.
What were your responsibilities at CL? (Note: Mary Ellen Shands retired from Cancer Lifeline on March 31, 2020).
I managed the support group program, which entails recruiting, training, and supervising facilitators for 29 SG’s that meet each month. I also conducted Family Meetings, attended Cancer Committee meetings at our partner hospitals, and presented outreach programs to providers at those sites to be sure they know and understand the programs CL offers at their site. My role evolved over time, when we first moved to the Dorothy O’Brien Center in the winter of 1999/2000, offering support groups as part of our programming was not even on our radar! I clearly remember the day Barbara Frederick came over to my desk and asked me how I would feel about supporting a client to help put a support group together. We (Barbara, Ellen Zahlis, and I) had thought the hospitals were meeting that need, but one by one, clients began asking us to include support groups in our program offerings. The Support Group Program grew bigger and bigger with each hospital that contracted with CL for psychosocial cancer support services!
Tell us what it was like when all of Cancer Lifeline’s programming fit on one 8-1/2×11 sheet of paper.
Well…Patient and Family Emotional Support Programs at that time did not include support groups. The primary PFEST programs were the Lifeline, Family Meetings, and Kids/Parents Group. However, we did also hold a relaxation & stress management class and an exercise class at the Good Shepard Center and at Seattle Central Community College. We did not have the Center then but worked from an office in the 2nd & Seneca Building downtown. When the “dream” of having a Cancer Lifeline Center became a reality, and we moved to the Dorothy O’Brien Center, that’s when the Creative Expression Program came into being (with Basha Brownstein being hired) and we started holding lots more exercise & health promotion programs (hired Lisa Talbot!) and began offering yoga & stretch and strength and nutrition classes here at the center. Additionally, around this time we formalized the Therapist Referral Program and I began building the Therapist Referral Database.
What is the biggest change over time?
So, so, so many changes… I would say the continuous and ongoing “shift” in job responsibilities. As we grew, my job description grew, then when it was at a tipping point, I would offload some things to others. Then we would grow some more and the cycle would start all over again! Also, as with all small organizations, decisions tend to be made as a “group” with input from everyone. As we grew, that was just not feasible! Additionally, when you start out, everybody does everything, including washing beer glasses from the annual Brewfest Fundraiser we used to have at Union Station to helping my husband paint the very first Cancer Lifeline Room at Northwest Hospital (Barbara asked him if he would do the painting…and who could say no to Barbara?!)
What shifted when you had your own cancer diagnosis?
Before joining Cancer Lifeline, I had worked in psychosocial oncology for almost 20 years, including working as a hospice nurse for many years. When I first learned about the four needs that Cancer Lifeline built all their programming around, I was thrilled. From my experience, needing solid, evidence-based information about cancer, having someone to talk to who could just listen to you sort and talk, feeling included and not isolated, and above all feeling some sense of control were indeed the needs that patients and families needed! I loved delivering the “Four Needs” lecture during Lifeline training or out in the community when asked to talk about Cancer Lifeline’s programs and services!
Having said that, when I was diagnosed with breast cancer two years ago I had to make the mental shift from caregiver to care receiver. In 2018, when I was diagnosed, I had been a nurse for over 40 years, it has been my calling my entire life. Caring for others will always define who I am as long as I am on this earth…so, making that shift was very hard for me. This played out in different ways since the moment I saw my pathology report. One of the first thoughts I had was, “OK…get a grip, you have to call my husband but you have to be calm…don’t freak him out”. The second thought was “oh good god, this is gonna be devastating for our kids. Again… “stay calm, the last thing anybody needs is for you to look like you are falling apart.”
The third thought was “OMG, how many times have I listened to others say the exact same things” that are now going through my mind. I understand cancer in a whole new way because I am part of the club now, I understand how desperately you do not want to burden those you love with fear, worry and concern.
I understand now, from deep down inside of me, the agony of waiting week after week for test results before you can land on a treatment plan. The things that go through your mind are the stuff of bad television dramas. Will my daughter have to deal with this if I have the breast cancer genes, what if the tumor cells are more aggressive than originally thought and I do have to have chemo, what if cancer cells are escaping from my breast and invading other parts of my body as we sit here doing nothing? Why should my journey be any different than my sister’s who was just told her breast cancer has metastasized to her lungs and bones? And of course…how long will I really have to live now that I have cancer? The unanswerable questions, uncertainty, the inability to plan what you will be doing the next week or next month, and feeling totally and completely out of control of your life are CRAZY MAKING!
I now “get it” and understand at an even deeper level what happens the moment you find out you have cancer. You need to make sense of what you have been told, you need INFORMATION to understand all the details of the test reports and what the doctors are telling you. You need to talk and sort it all out with someone who can LISTEN, not try to reassure you or minimize your concerns AND not judge you for sounding inarticulate, anxious, and confused. You need to know you are not ALONE, that there are others who wake up in the middle of the night muttering, “but what if…” who feel as scared and upside down as you do! And above all, …you need ways to take some CONTROL back…because any sense of control evaporates the moment you find out you have cancer.
What’s next for you?
I am not retiring completely, I will continue my research work at the UW School of Nursing, developing, evaluating, and disseminating programs to support families living with cancer. I am able to do most of this work from home which will simplify my life quite a bit. AND, of course, I will always be available to do contract work for Cancer Lifeline, whether it is subbing in for a Support Group facilitator or doing a Family Meeting!
Some time ago three words “Strength. Dignity. Hope.” were added to the Cancer Lifeline logo? Of those three words, which resonates the most for you?
Hope definitely resonates the most for me. There is always something to hope for and hope is what keeps us getting out of bed each morning. I have come to believe that hope exists on a continuum, what we hope for changes over time, and what circumstances we find ourselves in, but hope is what keeps us going. When it comes to living with cancer, we may hope to be cancer-free, or hope for treatment to work or for it to end! At the other end of the spectrum when cure is not within our reach, we may hope for the best quality of life, for open and loving communication with family and friends, for adequate pain control, and sometimes for a peaceful death.