15. The Cloud that Doesn’t Go Away

Kirsten Kaae, RN, BSN, LPC, M. Ed. has been serving the needs of the terminally ill and their families since 1987 when she started her career as a hospice nurse. Ms. Kaae has pursued extensive post graduate work in child and family therapy and rehabilitation. She holds dual licensures as a registered nurse and as a licensed professional counselor. She is a regular guest lecturer at Texas Woman’s University and University of North Texas, and is frequently called on to speak on a variety of topics relating to her fields of expertise. In 2008, Kirsten was the recipient of the Oncology Nursing Society Foundation’s Pat McCue Palliative Care Nursing Career Development Award. For more information and resources, go to Kirsten Kaae’s website: It’s About TIME: Straight Talk About Aging and End of Life at www.kirstenkaae.com.

The Pink Ribbon Blues essay “Every Silver Lining has a Cloud” touched my heart in many ways. I wholeheartedly agree that failure to acknowledge suffering from breast cancer disrespects and trivializes the plight of those who are dealing each day with its effects. Having worked as a hospice nurse for 23 years, I have seen the devastation cancer can cause to the mind, body, and spirit of those who are directly and indirectly affected. Yet, I have cared for many whom, when their cancer recurred, felt a profound sense of failure that they were somehow responsible that they, in the end, were unable to “beat”cancer.

Acknowledging suffering and despair is somehow viewed in this society as a failure. Yet, suffering is part of life. The poet Khalil Gibran talks plainly about the connectedness of joy and sorrow: “The deeper that sorrow carves your being, the more joy you can contain.” He says about joy and sorrow, that “they are inseparable. Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.” So it is with breast cancer. Amidst the celebration of life is the ever present threat of re-occurring cancer, and perhaps the inescapable reality that one’s cancer is terminal, a cloud that will never go away.

The Monster In the Closet

In my work, I call the cloud of impending mortality, “the monster in the closet.” Reminiscent of that time in childhood when we couldn’t sleep because of a sinister monster lurking in the dark, the monster in the closet of anyone who is living with cancer is, of course, the fear inherent in knowing that cancer, for some, will result in death. When we were children, someone opened the closet door wide and turned on the light. Like magic, the monster was gone! Opening the closet door of cancer and turning on the light will not make this particular threat go away. Facing it, however, can diminish its power.

The monster analogy helps people to think about fear of the unknown and consider what may be gained or lost when one chooses, or not, to open that door and really look inside.

Choosing to open the closet door of terminal illness to acknowledge what it means for one’s life and death is a difficult choice to make. This choice is not made any easier by the lack of support for such decisions in a culture that tends to think in terms of survivorship. But the decision to open the door and consider one’s mortality has important consequences.

First, it takes energy to ignore and suppress an unwanted reality. The power of positive thinking is seductive in its proven worth. However, unless the reality of the potential life-threatening nature of cancer is acknowledged, positive thinking comes with a price tag called self-doubt. What if my positive thinking does not work? What if my cancer comes back anyway? Would that mean that I somehow failed? Would it mean that I did not “think positively” enough? Of course not, but keeping the door closed brings such questions.

Second, sometimes we are lulled into thinking that if we look our dread in the face and consider the “what ifs?” that we somehow bring something bad upon ourselves. Something as mundane as taking the snow tires off of the car might lead someone to believe she was singlehandedly responsible for causing an unseasonable blizzard! In the say way, facing the possibility of dying from cancer could seem as though a person had the power to bring a recurrence upon themselves. As a result, many people are encouraged to lock their fears away with the hope that avoiding them will make them less likely. We live in a strangely superstitious world.

Choosing to face the monster in the closet does not mean abandoning hope, giving up positive thinking, or (somehow) jeopardizing the outcome of treatment. After working for more than two decades with people at the end of life, I have seen that thinking about mortality is not morbid. It is prudent and affirming for many. Facing fears, asking the “what if” questions, gathering information, then making decisions and plans leave people feeling energized, relieved, and at peace. Facing the fear also diminishes the power it wields in one’s life.

What Else Might Keep Us From Wanting to Face What’s Next?

It isn’t easy to make the decision to acknowledge that one’s future is uncertain. Intense anxiety about facing what’s next can be almost immobilizing. I know. I’ve been there even though my monster is not breast cancer. Many people have visions of living to a ripe old age. The reality is that many of us don’t, and anxiety is a natural response when acknowledging that one’s life may be shorter than originally thought. Facing this anxiety with gentleness and honesty makes the feeling temporary. Then, we can go on to do what we need to do.

Many of us also have loved ones who may be invested in suppressing the truth about our prognosis. This too creates anxiety. After all, facing the mortality of those we love also forces us to consider our own lives, and our grief. Working with families in palliative care, I’ve seen that family members will often take their cues from the person affected most profoundly by the disease, even if it takes them some time to let the idea settle. Most will support open dialogue and even have a sense of relief when it is okay to talk about the future, and share the myriad thoughts and feelings that have to that point been left unspoken. Some people, however, do meet serious resistance from family members. If this happens, we may then have to decide whose comfort level needs honoring the most, and then act accordingly.

Those who have children at home may be especially hesitant about opening the closet door. The desire to protect our children from any harm and distress can be overpoweringly strong. As parents and grandparents it is our job to shield our children from harm. We bandage the scraped knee and fix the broken bicycle, but we cannot shield children from grief and loss. Nor should we.  Doing so, no matter how well intentioned, can cause children to feel isolated, overlooked, and excluded. We all deal better with what we know than with what we can only imagine. The imaginings of a child who senses something is wrong, but does not know exactly what it is, can be much scarier than any monster lurking in the closet. Children of all ages are remarkably wise and resilient and possess a degree of understanding far beyond their verbal capacity.

The Power of Facing What’s Next

I think often of one of my hospice families where an older woman was dying of liver failure. She lived with her husband, had family close by, and her two teen-aged granddaughters visited regularly. One day I asked her husband: “What have you told the kids?” He answered: “Nothing – we did not want them to get all upset.” My next question was: “Well, when DO you want them to get all upset?” Later that week we had a family meeting and the girls were encouraged to ask whatever questions they had. They had already sensed that their grandmother was dying, but they had not felt free to ask about it. Their main concerns were that she not suffer any pain or other distress, and they needed reassurance that their grandmother would know who they were even when she became unable to communicate. The two granddaughters started to spend more time with their grandmother, cooking meals, and chatting at her bedside. She had a peaceful death with all of her loved ones around her. Her son wrote to me and told me that seeing his daughters at his mother’s bedside as she died had, for him, been  “one of life’s beautiful moments.”

For those who live with terminal illness, facing that truth about what that means is understandably frightening. Yet it is empowering to be honest with ourselves and with those we love, and to plan for the future, no matter what it might bring. It gives a measure of control and enables us to live more freely and fully when we no longer spend precious energy suppressing or shutting away the reality od the hand we’ve been dealt.

Taking charge of our destiny by acknowledging the monster in the closet and making plans for the “What ifs” of life can lighten our hearts, strengthen our step, enrich and empower our entire being. By doing so we will not only honor our own reality, but also the lives of those who have moved on before us.

For more consciousness raising essays, check out “30 Days of Breast Cancer Awareness.”

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3 comments to 15. The Cloud that Doesn’t Go Away

  • thank you.
    MY cloud doesn’t seem to go away. my sister lost her battle to breast cancer a few years ago. she had a mastectomy, and all the treatments that went along with it. 5 years later, the cancer had returned and spread throughout her entire body. she had 3 daughters, 2 of them under the age of 15…at that time. my sister ‘kept the truth’ from them. she didn’t want them to know that she was dying. of course they knew she had cancer…they saw what it was doing to her…but right up until she went to Hospice…they thought she would get better and go home. she never made it out of there.

    this was her choice…to not want her kids to know the truth. she thought it would be too painful. BUT i had a different opinion. i thought if they knew the truth, they would be able to handle it…and it would give them what ever time they had left to be together…to spend their time saying what needed to be said…doing what they could for their mother…and for themselves.

    anyway…MY cloud still hangs over my head. a year and a half after my (only) sister passed away, my (only) brother died of gastric cancer. my dark cloud grew. yes, it’s getting lighter…the sun is shining through…but i still find it hard to see sometimes.

    thank you for your heart felt words…

  • Thank you for sharing your story, Laura,
    Yes, it can be difficult, at times, to trust that the sun is still there when the clouds keep rolling in. I am sorry for you losses.
    Your sister’s children will find their way through this, so long as they have loving,supportive family who are willing to open the door and share their grief. The sad part about choosing to “protect” children by not telling them is that, on some level, they already know….they have just not been given permission to talk about it or ask the questions that haunt them.
    Blessings to you, Kirsten

  • Mary

    Kristen, I can’t believe I didn’t see this sooner! God bless for the wonderful work you do. I believe there is a special place in heaven for those who work in hospice. My mother had a wonderful hospice team that my siblings did not appreciate. They and the nursing home personnel supported me as I tried to convince my sibs to allow them to do their work. I took a lot of flack from my family, of origin, because our views were so different and the wounds have been a long time healing. It is because of what my mother went through that I put in place a living will and health care proxy. Thus I, opened the closet door and faced the monster before my first diagnosis in 06. Less than three weeks after mastectomy I was at my mother’s bedside, encouraging her to go, in her final moments on this earth. The words I heard, that no one else heard, except Mom were, “In the words of Martin Luther King, Free at last, free at last, thank God almighty, I’m free at last!”, and she is. Mine was the last name she called despite her dementia. My siblings barely spoke to me afterwards. I continue to volunteer at the nursing home that took my mother’s best interests into consideration, over her family’s misguided views. Working with, and enjoying this population is one of the greatest joys of my life. I have made many friends and it has been my privilege to guide more than one home, when the time was right and their families were unable or unwilling to do so. Thank you do much for writing about a, to often, taboo subject in such a wise compassionate manner. I believe it is only when we can face our own mortality that we can truly “live”!

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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