There is a Maori proverb that says turn your face to the sun and the shadows will fall behind you. As the reality of impermanence weaves in and out of life, facing and becoming part of that weave, those ribbons of light and dark that make up the fabric of who we are, can create a powerful way to face the fears of recurrence. In essence, the fear of recurrence is the fear of death. There is more to surviving cancer than surviving cancer. The door does not close behind you when you leave the treatment room. That door is left ajar for the rest of your life.  How you walk through the numerous doors of the days of your life can be creative and engaging.

The American Cancer Society has a section on their online site entitled “Living with Uncertainty: The Fear of Cancer Recurrance” in which they define cancer recurrence as “the return of cancer after treatment and after a lengthy period of time during which the cancer cannot be detected.  (The length of time is not clearly defined.)”  The piece describes the concerns of the cancer survivor as “What Ifs”:

• Will it come back?
• What are the chances it will come back?
• How will I know if it has come back?
• What will I do if it comes back?
• When will it come back?

The common thread in all of these questions is come back. What if it comes back?

You are not alone in these thoughts and concerns.  Don’t be afraid to talk about them.  It helps to express your fears.  It hurts to hold them in.

Wow!!  Something to Aspire to …

STORIES OF HOPE

57-Year Breast Cancer Survivor to Celebrate 90th Birthday

Article date: March 24, 2014

“I feel extremely excited getting ready to celebrate my 90th birthday. No way under God’s green earth I thought I would live this long. I have an active, busy, healthy, wonderful life, and a wonderful family.”

By Stacy Simon

Breast cancer survivor Carol Stevens says she’s going to enjoy every minute of her upcoming birthday party. “I feel extremely excited getting ready to celebrate my 90th birthday,” said Stevens. “No way under God’s green earth I thought I would live this long. I have an active, busy, healthy, wonderful life, and a wonderful family.”

Stevens was diagnosed with breast cancer in 1957 when she was 33 years old. She and her oldest daughter had traveled from their home in Pennsylvania to visit a specialist in New York City because of concerns that her daughter had a brain tumor. While at the hospital, Stevens arranged to have herself examined as well, because she’d found a lump in her breast. Test results showed that Stevens’ daughter did not have a tumor, but Stevens did.

In 1957, breast cancer treatment was much different than it is today. The standard surgical treatment was a radical mastectomy, which is removal of the entire breast, lymph nodes, and some muscles of the chest wall under the breast. Today, this type of surgery is rarely needed to treat breast cancer. Instead women with breast cancer can choose among less drastic kinds of surgery. The surgeon also removed Stevens’ ovaries as part of her breast cancer treatment. This is rarely done today, and instead other forms of hormone therapy, as well as additional treatments like radiation therapy, chemotherapy, and targeted therapy are common. What’s more, in Stevens’ day, women often underwent the surgery for a breast lump without knowing in advance whether they’d be having their breast removed or not.

“You had to go in with that understanding – if it was cancer – so you had no warning,” said Stevens. “Six hours later I came out of surgery with no breast. It was cancer.”

Stevens says her attitude about the outcome of her trip to New York was strangely positive. A mother of 4, she’d learned her daughter didn’t have a brain tumor, and now would no longer have to worry about becoming pregnant again. In addition, Stevens’ doctor prescribed a “treatment” that Stevens wholeheartedly embraced.

“I was told when I got home not to get tired,” said Stevens. “Every 2 weeks, hire a babysitter and go out to dinner with my husband. And put up my feet for 10 minutes every day.”

Living life, loving life

Although doctors gave Stevens just 5 years to live, once she got home from the hospital she says she didn’t really dwell on it. After all, she had 4 children to take care of, the youngest just a baby and the oldest a teenager. “You get up every morning and count your blessings,” said Stevens. “I have something on my computer that says there is a reason God limits our days: to make each one precious. And that’s what I do.”

Once her children were older, Stevens went back to school and earned her master’s degree in education. She became a remedial reading specialist and eventually a dynamic administrator in the school system, pushing hard for reading programs across the district. She retired at age 69, and then consulted until age 72.

Though she retired, she didn’t slow down. One of her lifelong dreams was to ride an elephant in Africa. At age 83, after her husband passed away, Stevens began traveling the world with her youngest daughter, beginning with that trip to Africa and a ride on an elephant named Danny. Next November, Stevens and her daughter are headed to the Amazon.

“If you don’t have any belief in life, this makes you have it because I have been so lucky and so healthy,” said Stevens. “Being 90 to me is almost unbelievable. I’m still actively working and driving and doing everything.”

This excerpt is from my book, Surviving the Storm: Finding Your Way Through the Wreckage of Cancer.

The tyranny of positive thinking runs rampant in the cancer community.  Although there is no conclusive evidence of stress, depression or  a specific personality type causing cancer, these dangerous judgments continue to exist and cause a great deal of personal pain to those struggling with cancer.   Self-blame and the idea that you somehow caused your cancer by not thinking the right way only clouds the truth  that you did not choose this illness.  Perhaps in that way it is an antidote to helplessness or a modicum of certainty in an uncertain world.  However, there are better ways to soothe the confusion of not knowing, of not having control, than dwelling on  the unsolicited opinions of  others, or  even worse,  drenching yourself in blame.

“Please don’t preach at me—I feel bad enough already.”  –Shirley Corder, Strength Renewed: Meditations for Your Journey through Breast Cancer

Cancer seems to be a robust focus of the positive thinking brigade.  We don’t seem to pressure people who have other equally life threatening diseases  to be positive . We don’t tell them that their disease is a gift.  Why is it that we insist on white washing cancer into some awesome  life changing window of opportunity?

“ The failure to think positively can weigh on a cancer patient like a second disease.”  –Barbara Ehrenreich,  Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America

On the other side of the positive thinking coin is the tyranny of addressing cancer by being smart, sassy, and edgy. This import from the glib “get over it, don’t wallow” school of thought creates guilt and shame for having lingering feelings, particularly in survivorship. The message is that something is pathologically wrong with you if you still feel worried, scared, sad and the worst of all …  depressed.  You’re supposed to be sexy and  cool. Get a tattoo and go sky diving. The point seems to be that you need to impress others with your courage and moxie. It’s cool to act like it’s all just  a big joke …

“If I keep grinning maybe my inoperable colon cancer won’t hurt so much.” Tony Millionaire, Maakies

A cancer survivor recently said to me, “I thought I could go under it, I thought I could go around it and then I realized that I had to go through it, and here I am.”  The balance of dark and light and the endeavor  not only to stay alive but to make something out of a horrible experience is an age old tale of loss and redemption. Those who accept the challenge of the hero’s journey will dive deep in stormy water, gasping for air, until they wash up on some new land that they didn’t expect to arrive in.  This is a deeply personal commitment not a day trip to the beach.

The sooner we can acknowledge the underbelly of the cancer experience, the sooner we can balance the horror and the gift.  Bitterness and overwhelming anxiety are merely plugged up emotions that haven’t been allowed a scream or a howling cry. Yell, shout, cry, shiver … shake until you can’t shake anymore.  Then rest … and move on.  Understand that all those stupid comments came from not knowing what to say.  Realize that the remark which annoyed me the most, “you’ll be fine”, was only the well meaning and frightened wish of those around me that, “I would be fine.”

The good news is that many more of us are surviving cancer and continuing on with our lives.  As our numbers grow there will be an even stronger need to attend to the concerns of cancer survivors.  Resources for those who have had cancer as well as for those who are a part of their lives also need to grow in order to meet the physical, emotional and financial needs of people who have been impacted by a diagnosis of cancer.

http://www.latimes.com/science/sciencenow/la-sci-sn-cancer-survivors-america-20140531-story.html

“There is no agony like bearing an untold story inside of you.” —Maya Angelou

Tonight at Asilomar Conference Center (in Pacific Grove, California) I am offering an experiential workshop for people who have been affected by a diagnosis of cancer.  Cancer affects all who are involved with the patient.  Attending to the needs of the partners, family members, friends and colleagues in regard to the trauma and emotional upheaval is as vital as bringing awareness to the needs of the patient.

We will gather to explore a narrative, storytelling process designed to help deepen the process of healing, sit at the edge of the unknown, touch the layers of our experience and voice what we discover.

I am glad to share this process with you, your group or your organization.  For more information contact me at ckrautermft@sbcglobal.net.

“Change in the world comes from individuals, from the inner peace in individual hearts. Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far-reaching effects.”  Dalai Lama

It’s important to give yourself the right to be your own best advocate.

1.  Don’t be afraid to ask for what you need and want.  You know yourself better than anyone.

2.  Educate yourself by researching reputable websites.  Be careful not to stray too far into the internet as that can cause panic and confusion.

3.  Join a group where you can gain information and support from others.  These can be found in cancer centers as well as online. Ask your doctor, social worker, or therapist for referrals.

4.  Give yourself permission to rest.

5.  Love yourself.

“With over 3 million women battling breast cancer today, everywhere you turn there is a mother, daughter, sister or friend who has been affected by breast cancer.”  Betsey Johnson

Wishing all of you a wonderful Mother’s Day.  I hope you are well celebrated!

You didn’t put having cancer on your to-do list but you can create a survivor plan, a thoughtful list that gives you a map to guide you through  uncharted waters. Since we’re still around, we might as well take part in our lives, create our stories regardless of whether or not they have a clear beginning, middle or end. Your plan becomes the boat that holds you as you learn to steer through the waters of uncertainty in both darkness and light until you find yourself in the place you are now. In the end, it’s really all we can count on. In the open space of our awareness we keep falling forward from one moment to the next, learning to live with uncertainty as we go.

They tell us we must be our own advocates but … how?  And .. all alone?  Currently there are some online sites where a cancer patient may create a survivor care plan. These plans are the ones most often given to the patient by their physician. While somewhat helpful, they are not personalized to the individual’s unique situation and needs. Most of these plans have a small box labeled “Psychosocial Distress” which  you can check.  But what happens then? Hopefully, someone asks you how you are and , if you want, refers you to some helpful resources. Unfortunately, this doesn’t always happen and you may end up feeling isolated with all that is going on inside of you.

By creating your own survival plan you become an integral part of the process of moving through and beyond cancer. It can provide you with a structure if you are a person living with cancer. You may choose to share this plan with your treatment team as an adjunct to the plans in your medical records. Your medical team can interface with the information regarding your treatment as well as your post treatment follow up; they may be able to help you focus on identifying your emotional needs and then make appropriate referrals. If you work with a social worker you can put together the resources you will need whether you live with cancer or have moved beyond the treatment phase of cancer. These may include financial as well as social services information. You may choose to work with a psychotherapist to help you explore the thoughts and feelings that will arise as you reflect on the questions of your survivorship.

If you have questions or need guidance on how to structure your plan,  feel free to contact me.   ckrautermft@sbcglobal.net

The following is an excerpt from my book Surviving the Storm: Finding Your Way Through the Wreckage of Cancer

“People with histories of cancer are considered to be ask risk for PTSD. The physical and mental shock of having a life threatening disease, of receiving treatment for cancer, and living with repeated threats to one’s body and life are traumatic experiences for many cancer patients.”  National Cancer Institute (NCI)  12/1213

“Each evaluation, breast exam, MRI etc brings me back to the terror of reliving the initial horror.”  Barbara, survivor

Facing life threatening illness brings a complex mix of fear, sorrow, anger and confusion.  The capacity to deal with the illness and all that it involves takes a massive amount of energy and courage. Yet even when you move beyond the illness, sensations, thoughts and feelings still linger and emerge at times when you are vulnerable or tired or when something triggers the invisible pieces of sharp glass or twisted metal  still hiding beneath the surface of your skin, embedded in the soft tissue of your soul.. This is what can happen when you have endured trauma, sometimes months and  even years after the original incident. Trauma denied only festers and grows within you like a different cancer. It becomes a cancer of your inner world, a world where you struggle to breathe, where you feel that you can’t move, you’re frozen in time. In the hidden depths of  your secret world is a place that affects everything you do,  everything you feel, and all that you are. Trauma can shatter your illusions of safety and control.  When we can identify and then acknowledge that our trauma is congruent with our experience, we can move forward into a place of compassionate awareness. In naming the wound, we find healing.

The struggle to include the experience of trauma into your everyday life can be fraught with difficulties. What has happened to you is a part of you.  It is your history, it tells about you.  You are a person whose life story has a chapter titled cancer. And yet you don’t want this chapter to be all that your memoir is about, you want to turn the page. You want to write the next chapter…