I am always amazed by what can happen when we take the risk to reach out and connect with others.  This type of experience used to be called “strangers on a train” and then was known as “strangers on a plane” – the deep encounters we can have with people we have never met and will likely never see again.  Today these chance meetings often happen online.

Recently I was moved to respond to two separate pieces in the New York Times.  Both letters were published and I have since received several very touching communications from people who related to what I had written.  This correspondence really touched me and reminds me of the deep intimacy that can occur when we open our hearts to another human being.  We feel seen and heard.  We experience an attachment through sharing what we carry within us with another.  I feel  a warm and strong sense of gratitude when I am joined with other people who’ve had similar experiences  … it makes me feel less alone.

Below are the two articles included with my comments:

Suleika Jouad: Lost in Transition After Cancer

http://well.blogs.nytimes.com/2015/03/16/lost-in-transition-after-cancer/

Cheryl Krauter

San Francisco, CA 9 days ago

I was diagnosed with Triple Negative Breast Cancer 8 years ago this month. I’ve been “cut, poisoned and burned” and also live with the side effects of this aggressive treatment. My pains, my neuropathy, my wonky heart valves aren’t visible. What is undisguised is the scar on my chest where my port was: looking down at this mark, even after 8 years, I’m starting to cry. I made it out of a hellish journey and, like you, like all cancer survivors, the shadow of recurrence lives in the corner of the room. I was a psychotherapist before, during and after cancer. Both personally and professionally, I experienced the stunning absence of attention to the emotional trauma of that slams into us after finishing treatment. After about a year, I made a difficult personal choice to stay in the world of cancer as a humanistic psychotherapist/patient/survivor bringing attention and , hopefully, consciousness to this need. I deeply feel and believe that we need to tell the stories of our experience so that we can heal. It’s vital to create the resources for emotional support and growth not only for us, the patients, but for our partners, families and friends. In so many ways it is a solitary journey, but we don’t always have to walk it all by ourselves.
Cheryl
www.cherylkrauter.com

Angelina Jolie Pitt: Diary of a Surgery

http://www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html?_r=0

Cheryl Krauter

San Francisco, CA 2 days ago

I feel a deep gratitude to Angelina Jolie Pitt for, once again, telling her personal story so that other women are given the knowledge which does, indeed make us all powerful. I was in my mid-fifties when I was diagnosed and treated for Triple Negative Breast Cancer. I was not young but I had a 13 year old boy and the thought of leaving him at that point was unbearable. This helped me fight for my life. I’m fortunate, I’m still around and have no evidence of cancer. While I was tested and am not BRCA positive, I know now that there are other genetic threads involved in this type of breast cancer. Nearly 8 years ago the tests didn’t exist to look at other possibilities but that has changed. I want to encourage other women who have a strong family history of cancer to ask their physicians about any and all genetic testing as well as to request a complete analysis and a pathology report of any surgically removed tumors. I want us all to educate ourselves and raise our voices for what we need.
I am a psychotherapist/survivor who now works with women who have cancer. My heart aches at the numbers of young women who are dealing with life threatening illness at such a young age … I sit with some of these women every week. I believe that cancer research is essential in understanding this disease which sometimes swoops in and carries off those who deserved to stick around a whole lot longer to live their lives.
Cheryl Krauter

If I had my life to live over, I would start barefoot earlier in the spring and stay that way later in the fall. ~Nadine Stair

Today is the first day of spring which is known as the Spring Equinox. The Spring Equinox brings us a balance of day and night because the Sun is sitting on the Earth’s equator. Translated literally, equinox means “equal night.” Because the Sun is positioned above the equator, day and night are about equal in length all over the world during the equinoxes.  The Spring Equinox is celebrated in many traditions as a time of fertility, regeneration and rebirth. For thousands of years our ancestors have celebrated Spring Equinox, as a time of fertility, rebirth of life and energy. It is the balance of light and dark …

This is a day to reflect on what you want to renew or change in your life. It’s a time to celebrate the end of the long, cold winter and rejoice in the blooms of springtime. It’s even more important if you are struggling with illness or the aftermath of illness to turn your face toward the light and remember that no matter how dark it gets, the light returns.  Your glance may fall on a patch of sunlight on the petal of a flower or the light in the eyes of someone you love. Take some time today to find luminosity wherever you are, whatever you are doing.

What do you want to change? What would you like to renew?  What do you want to let go or and release?

Feel free to leave a comment about your intentions for change.  Happy Spring!

The only mistake you can make is not asking for help.”  Sandeep Jauhar

What do you want to say to the people who are treating you for cancer?

What questions do you want to ask?

All too often we feel like we’re bothering our doctors with our thoughts and feelings.  We are afraid to take up too much space because we might be burdening them with “stupid” questions or taking up too much of their time with our troubles. There are numerous ways that we stop ourselves from advocating for what we need and want when at times our lives depend upon our questions and concerns being heard.  The danger in worrying about being too much for our providers is that we can lose track of  valuing ourselves.

Cancer can overwhelm our personal identity – as patients it can be a struggle to remember who we are as people with our unique histories, present moments … and futures. It can be difficult to remember who you are beyond, or maybe even in spite of, being a person who is dealing with cancer.  Quality of life at its most essential is a deep remembering of what matters to us and how we continue to value ourselves and the choices we make.

Reflect on what really matters to you in regard to your cancer care or survivorship care.  My hope is that you will also  feel safe enough to risk bringing your questions and comments to your treatment team as a way to open up an important dialogue.

“It’s OKAY to be scared. Being scared means you’re about to do something really, really brave.” –Mandy Hale

It’s really, really scary to face cancer. There’s no getting around this and it only makes us nuts to pretend we’re not frightened.  When I listen to people in my office, in workshops, groups and panel discussions describe their experiences, beneath all the comments and questions, I hear the sound of fear. Often the words, the details don’t even matter – it’s like we need to find some reasons to voice the real terror that is striking our hearts and hitting us upside the head. In online groups, similar questions and familiar statements of concern show up time after time … the cries of fear are loud and the need to be listened to is palpable.

Why are we afraid of fear? In the cancer world we’re often told that fear is a “negative” emotion that will only make you sicker … maybe even kill you.  So fear becomes like a shameful stalker striding alongside illness, distress and confusion.  Sucking in our breath we pretend not to feel fear. Those who actually manage this denial are looked upon as the real conquerors and heroes – nothing stops them!  The rest of us feel wimpy and stupid and learn to keep our nasty, bad fears stuffed inside.  All that dismay and dread becomes an overwhelming anxiety that gets caught in the throat or cramped in the pit of the stomach.

You don’t need to carry all that suffering inside of you or bear it alone.  Here’s some suggestions on soothing your fears.

1. Breathe in through your nose- mouth closed.  Breathe out through your nose – mouth closed.  This simple type of breathing affects your parasympathetic nervous system and helps to calm your nerves.  Repeat this over and over again.

2. Think of people you can talk to when you are frightened – be sure to pick individuals you can trust to be present with whatever you are feeling.

3  Write down your fears and then tear up the piece of paper or burn it.  This helps you let go of all you are carrying around inside of you.

4.  Movement helps ease anxiety and helps us feel more in charge. You don’t have to run a marathon, you can even do some stretching while you are in bed or sitting in a chair.  A short, easy walk works wonders.

5.  Be kind to and encouraging to yourself.  Imagine you are talking to a small child who is terrified – you reassure that little one that you are there for her and hold her close.

Be well …

“A writer out of loneliness is trying to communicate like a distant star sending signals. He isn’t telling or teaching or ordering. Rather he seeks to establish a relationship of meaning, of feeling, of observing. We are lonesome animals. We spend all life trying to be less lonesome.”     –John Steinbeck

When we’re in treatment for cancer we are often surrounded by many people – our doctors, nurses, technicians and various other members of our health care team.  There’s a certain structure we can count on … appointments … treatment schedules … resources available where we are being treated.  We often have contact with others who are going through cancer treatment.  I think fondly of  those people and wonder about them from time to time – hoping they are thriving.  I remember the wonderful guy who parked my car at the cancer center – he always had a smile and kind word.  It’s a community none of us ever wanted to join but it becomes a place where we can find solace and support.

It’s been almost 8 years since I had cancer and since that time I’ve continued to be a part of the community that struggles with cancer.  I’m deeply moved by my contact with those who are in different stages of a cancer diagnosis and the psychotherapy I can offer them.  I’m proud to be a board member of the Women’s Cancer Resource Center in Oakland, California-a place that brings awareness to under served populations, providing all services free of charge.  I’ve learned more about cancer and all the difficulties of services for people who deal with cancer than I ever dreamed  I would know.  It’s all a pretty tough business …

As many of you know, I believe that there is a serious and significant need for cancer survivors, their partners, their families, friends and caregivers to have a way to tell the stories of their experience.  I continue to be the “lonely writer” in my attempts to publish my work around this vital topic.  I don’t believe that we have to be stuck in isolation, filled with thoughts and feelings that want expression.  I trust that we can support one another in our struggles.

What if we, as the patients, stood up and made our voices heard?  And what if all of those affected by cancer, spoke out with their concerns?  I am suggesting that patient-centered care become human-centered care and that we, as those humans, take charge and ask to be heard.

Ask for what you need. Find people who will listen. Demand to be treated like a human being.

“Some survivors report that they later view the trauma as an event that added value to their lives through forced changes (Tedeschi & Calhoun, 1988), whereas others wish it could all be undone, given the sacrifices involved in achieving growth (Kushner, 1981).”

Most of us aren’t rich and famous when we get cancer, the cameras aren’t rolling and most of us can’t really go to the top of a mountain and meditate or spend the next year at an exclusive health spa.  We’re just trying to get though our day, pay our rent or mortgage, make sure the kids don’t go off the rails. Ordinary lives plummet into extraordinary circumstances. I remember laying flat on the table in a dark radiology room, looking at the screen that the radiologist had just turned so that I could see the mass in my breast, saying, “Oh, I’ve got something to deal with.”  She replied, “Yes, I think you do.”   Ok, here I go …

The journey through treatment, as has been discussed, offers structure and, in a kind of hideous  way, gives us a road map and a set of  instructions. After completion of treatment,  physical trauma is often present due to surgeries, harsh and toxic chemicals that have been poured into the body and rays of radiation that have beamed into various tissues and affected bones and organs. The trauma to our body is often extensive and certainly consequential, side effects may linger for years. The trauma that lives in our body can be addressed and  this helps in the release and movement of that trauma. When the emotional memory of our experience lives in the dark realms outside of our conscious awareness it is difficult to understand the complexity of our experiences. Stepping into the light of awareness we become conscious, we find our ground, we move on.

It is important to allow time and space for the healing of trauma.  All too often the push is for symptom reduction without attention to long term concerns and effects.  Because emotions are not easily measured and emotional wounds are not as visible as physical wounds,  this level of recovery can be misunderstood and rushed.  Emotional recuperation is truly no different than recovering from a surgery or  honoring the time it takes for the mending of a broken bone.  Renewal is not necessarily quick and real rejuvenation cannot be hurried.

Excerpt from my book -Surviving the Storm: Helping Cancer Survivors Tell Their Stories

The journey through treatment, as has been discussed, offers structure and, in a kind of hideous  way, gives us a road map and a set of  instructions. After completion of treatment,  physical trauma is often present due to surgeries, harsh and toxic chemicals that have been poured into the body and rays of radiation that have beamed into various tissues and affected bones and organs. The trauma to our body is often extensive and certainly consequential, side effects may linger for years. The trauma that lives in our body can be addressed and  this helps in the release and movement of that trauma. When the emotional memory of our experience lives in the dark realms outside of our conscious awareness it is difficult to understand the complexity of our experiences. Stepping into the light of awareness we become conscious, we find our ground, we move on.

Yet so often  the end of treatment is  marked as a celebration,  “hooray, it’s over, let’s move on.”  And then you feel guilty because, in truth,  you still really don’t feel so good …

“In the attempt to improve our lives, we may urge ourselves with the familiar refrains: “Just apply yourself … Start exercising tomorrow … Cut down on the sweets, booze, shopping … Pull yourself together …Come on, shape up, work out … You can do it if you really want.” And so it goes over and over again. These exhortations and good intentions are all admirable efforts at what we call self-control. While this ability is an important life skill, it is often modest it what it can accomplish and is fraught with obvious shortcomings. Frequently this strategy only works in the short run, leading us blindly into the quicksand of guilt and self-recrimination. Ironically, there are some days when it is no simple matter just to schedule a dental appointment or arrange for an annual  medical exam.”  Peter Levine, In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness

It can be traumatizing to schedule a visit with your oncologist, a lab test, a screening MRI or mammogram.  Some days it’s just difficult to keep going, let alone attempt a positive attitude.  Some survivors find solace in their religious practices while others may have developed a spiritual practice that offers them a supportive perspective. However, not everyone is so inclined and this can end up in an isolative experience post treatment when therapeutic or secular options are not presented and appropriate referrals are not made.  It’s not helpful to identify your distress if you are not given options that allow you to choose how to effectively deal with your pain.

Attention to the trauma that your body has been through can help the process of healing. There are ways to work with this and they most likely fall under the category of  “alternative medicine”  Acupuncture, yoga, nutrition, massage, Qi Gong and Tai Chi are commonly offered in cancer centers and  in clinics as a way to detoxify and heal from cancer. A great deal of suffering could be alleviated  if this was part of the treatment plan at the beginning of survivorship. Treatment for trauma as well as psychotherapy sessions are essential components  of a survivorship plan that can be deemed integrative.

Yet so often  the end of treatment is  marked as a celebration,  “hooray, it’s over, let’s move on.”  And then you feel guilty because, in truth,  you still really don’t feel so good …

“In the attempt to improve our lives, we may urge ourselves with the familiar refrains: “Just apply yourself … Start exercising tomorrow … Cut down on the sweets, booze, shopping … Pull yourself together …Come on, shape up, work out … You can do it if you really want.” And so it goes over and over again. These exhortations and good intentions are all admirable efforts at what we call self-control. While this ability is an important life skill, it is often modest it what it can accomplish and is fraught with obvious shortcomings. Frequently this strategy only works in the short run, leading us blindly into the quicksand of guilt and self-recrimination. Ironically, there are some days when it is no simple matter just to schedule a dental appointment or arrange for an annual  medical exam.”  Peter Levine, In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness

It can be traumatizing to schedule a visit with your oncologist, a lab test, a screening MRI or mammogram.  Some days it’s just difficult to keep going, let alone attempt a positive attitude.  Some survivors find solace in their religious practices while others may have developed a spiritual practice that offers them a supportive perspective. However, not everyone is so inclined and this can end up in an isolative experience post treatment when therapeutic or secular options are not presented and appropriate referrals are not made.  It’s not helpful to identify your distress if you are not given options that allow you to choose how to effectively deal with your pain.

Attention to the trauma that your body has been through can help the process of healing. There are ways to work with this and they most likely fall under the category of  “alternative medicine”  Acupuncture, yoga, nutrition, massage, Qi Gong and Tai Chi are commonly offered in cancer centers and  in clinics as a way to detoxify and heal from cancer. A great deal of suffering could be alleviated  if this was part of the treatment plan at the beginning of survivorship. Treatment for trauma as well as psychotherapy sessions are essential components  of a survivorship plan that can be deemed integrative.

Excerpt from my book - Surviving the Storm: Helping Cancer Survivors Tell Their Stories

What Happens Now?

What happens now? What happens next?

These are the questions that swirl in the mind and the heart of the survivor even before that last treatment. They begin to form without the knowledge of what is indeed next, or what will happen now. You are told about the follow-ups, often given some advice on what to eat, and reminded to exercise. Most of this is common sense and applies to anyone attempting whatever the current definition of a “healthy lifestyle” is. However, while maintaining a healthy weight, exercising, and not drinking too much alcohol have been proven important, research remains inconclusive on the other effects of diet on cancer. Theories in the form of the latest product or program come and go, preying on us in our most frightened and desperate moments. Beware magic potions bearing promises of life everlasting!

Turning toward ourselves—reflecting on what to do now and what to do next, exploring what is present—may fill the emptiness and soothe the terrors. It is not so much something to do, however, as it is a pathway to discover who you are now that you have survived treatment for cancer. Deciding what’s next may be as simple as deciding what you will have for breakfast, and it can also be as complex as exploring what you really want to do with whatever time is given to you. Asking What now? may be an invitation to the awareness of who you are now as you stand at this crossroads of your life. As there is little preparation for the emotional leg of survivorship, it can be confusing to know where to turn.

Leaning on others who can relate to your experience can be helpful during this time of transition. When asked what might have eased her anxiety immediately following the end of her treatment, Julie says that “a support group of survivors would have been good. I wasn’t interested in continuing in a support group where people were still engaged in treatment. Done with that, sort of. But a group of people a number of years out, someone to say, ‘Yes, I felt the same way. Yes, I bugged my doctors, too,’ would have been good.”

Still tender from the shock of cancer, we stumble out into the world outside of the hospital and the doctor’s office, shaken and unsure within ourselves and about our lives. “What happens now?” can be answered concretely by follow-up appointments, continued surveillance, tests, and so on. That’s the short answer. But life has abruptly changed as the visits to the doctors taper off and another day arrives. The world has gone on without us while we were in surgery and in the infusion room and while we received radiation, and it will continue on with or without us. How we want to continue is a profoundly personal search. But it’s difficult to begin to ponder these questions when it is still hard to believe that we will carry on at all. Working with these fears and beliefs may be the first part of “what happens now.”

What happens now? can be broken down into small sections, starting with day-to-day concerns and activities. For instance, how do you want to use the time you have now that you’ve been freed up from the appointments and treatments? You may want to take a walk, read a book, nap, or paint. Start with what is accessible and easy; don’t push or try to fit yourself into a place you don’t really want to be in.

Excerpt from my book, Surviving the Storm: Helping Cancer Survivors Tell Their Stories

While there is a growing awareness of the needs of cancer survivors, it seems to me that we could simplify the entire process by one important question … “how are you?”  The next step, which is not as simple, is to listen to the answer. When someone really listens to us and we are heard, we feel acknowledged and supported. I believe that the need to be seen no matter what we are feeling or going through is the most essential aspect of cancer care.  We don’t need to be told what to do, how to feel, what to think … we just need someone to listen.

http://www.curetoday.com/publications/cure/2014/spring2014/national-guidelines-aim-to-make-life-better-after-cancer/3

This can be a tough time of year for those who are dealing with cancer … not only those who are in treatment but their partners, families, friends and communities. The pressure to celebrate, to be happy and full of joy can be exhausting!  These tips from the American Cancer Society are offered as resources and support for all of you.  The 24/7 phone line number is included at the bottom of the article. People are here to listen …

Cancer During the Holidays

Article date: November 24, 2014

By Kirsten Eidsmoe

Holiday time may seem like just about the worst time to have cancer in the family. Even the jolliest of traditions lose their luster when you’re worried about your health care needs or those of someone you love.

If you or someone close to you has cancer or another serious illness this year, use these tips and resources to help lift your holiday spirits:

Do

• Give yourself permission to feel and express your feelings, whether of joy, fear, sadness, or pain. Let yourself laugh or cry.
• Take care of yourself: Eat balanced meals and make time for some exercise. Physical activity is a good way to release tension.
• Allow yourself simple pleasures — hot baths, naps, favorite foods — that will help lift your mood.
• Find distractions like going to a movie, dinner, or a ball game; playing cards with friends; or other activities you enjoy.
• Prepare for the holidays. Decide if you want to continue certain traditions or create new ones. Plan in advance how you want to spend your time, with whom, and for how long.
• Enlist support for organizing holiday gatherings, meal preparation, and cleanup.
• Learn to say no. You don’t have to participate in everything. People will understand if you can’t do certain activities.

Don’t

• Don’t pressure yourself with unrealistic expectations or try to do everything yourself.
• Don’t overindulge in alcohol. Because alcohol is a depressant, it can “bring out” or heighten bad feelings.
• Don’t try to force yourself to be happy just because it’s the holiday season.
• Don’t shop ‘til you drop. Stick to a budget if you are going shopping. Buying things will not make up for any negative feelings you are having. Decide how much money you can afford to spend on gifts and other items. Then stick to your budget.
• Don’t try to do too much in one day. Plan ahead, setting aside specific days for specific tasks.
• Don’t abandon healthy habits. Eat and drink in moderation. Get plenty of sleep.

If you’re grieving over the holidays

For people who have lost a loved one, the holidays can be even more difficult. Allow yourself to feel pain and whatever other emotions come along, too. Try following some of the tips above, and remember that although working through grief is important, it’s OK to give yourself a break from grieving by distracting yourself with activities you enjoy. Try to use this time to forgive yourself for all the things you did or didn’t say or do.

And remember that you don’t have to handle your grief alone. Talk with your family and friends about your loss, or find others who have lost a loved one. The American Cancer Society is available 24 hours a day, 7 days a week and can help you find support online, local bereavement groups, and other resources. Call 1-800-227-2345.

Reviewed by: Members of the ACS Medical Content Staff