The Medicine of the Soul

I believe that the treatment of the emotional trauma of cancer is as important as the treatment of the physical disease. Psychosocial support and psychotherapy are the pillars of healing for the survivors of treatment for life threatening illness as well as for the growing population of people who live with cancer. The capacity to look within and beyond cancer as well as developing a strong self- advocacy are all key for healing and moving on with your life. When untreated, the emotional wounds of cancer continue to cause suffering that you do not need to endure.  It is the medicine of the soul integrated with the medicine for the body that creates healing.

Excerpt from Surviving the Storm: Finding Your Way Through the Wreckage of Cancer

Getting Called Back For More Pictures …

Fear has many eyes and can see things underground.

Miguel de Cervantes

My annual mammogram took less than 15 minutes. The lovely young technician, knowing my history, smiled brightly at me and gave me the words we all love hearing, “We’ll send you a notice in the mail with the results.”  This generally means, “Everything is fine, we’ll see you in a year.” (Of course, for me, this means in six months I will be lying face down in the MRI tube as the machine scans my dangling breasts. My eyes are always shut tight but I imagine this must be quite an enticing sight.)  I smiled back, “Well, this means it all looked good.”  So we’re all smiling and I go home and proudly post my status on Facebook.

Flash forward to four days later as I sit at my desk attempting to organize and, as is popular these days, “de-clutter my space.”  The phone rings but I don’t pick it up because I really don’t want to talk about cleaning my carpets or adjusting a mortgage I don’t have, I am busy with clutter.

Whoa ..what a minute, it’s the imaging center …pick up the phone … “we need more images of your left breast.”  In an instant, my heart is beating and I feel like I have been punched in the gut.  Is it happening again …?

This is the sister of the breast that had Triple Negative Breast Cancer 7 years ago. She has her own lumps and bumps and is thickening in new places. I have been watching her with interest for awhile.  After making the appointment for another mammogram the following day, I spend time exploring her, searching for what may lurk beneath her surface.

That sinking feeling, memories and images flood into my consciousness and I do my best to hold back the tide of fear. I’ve gotten pretty good at this over the years but this time feels different.  I am scared.  My husband is scared. This really sucks!

For 24 hours I live with the possibility that I may be taking another trip down this road.  I try not to think that way, but I do.

And then,different from the diagnosis seven years ago, I begin to think about myself. For the first time, I allow myself to feel my own losses, my regrets over what I will miss if I die now, that it will be me who will lose. It will be me that becomes a memory that will fade over time. There will be so much that i won’t get to do or see or experience.  I allow myself to feel  compassion for myself.

12 hours later I was squeezed and twisted into the best imaging machines currently available and a doctor who is one of the people on the planet most familiar with my breasts gave me the “all clear.”  I got a reprieve.

I feel deeply grateful. I am once again humbled by what we, as cancer survivors, go through as we get tested and re-tested. We are always waiting for the results. And sometimes, that’s really scary.

“Layers” chapter excerpt from “Surviving the Storm: Finding Your Way Through the Wreckage of Cancer” by Cheryl Krauter

Our layers are our complexities. Rings that tell the age of the tree, the images beneath the paint that covers an original masterpiece. In the wreckage that is cancer, we can get trapped in the “litter”, not allowing ourselves to plunge deeper beneath the surface to find what treasures and truths live within us. Diving into devastation, we uncover bits and pieces of  artifacts we may never have dreamt existed within us, we discover the person we have forgotten, the one we aspire to become. Beneath the rubble of diagnosis, treatment and survivorship exists a lucidity that penetrates through old beliefs and habits that have lingered too long in the foggy confusion of our minds.

In pulling off the layers of the familiar clothes that we put on to decorate and disguise ourselves, we stand raw, much like we are stripped bare in the operating rooms and the treatment centers when we are  diagnosed with cancer. Those layers are cut, poisoned and burned from us leaving to face the world in a new skin. We may be called to reflect on the depth of our experience, to search within ourselves to touch meaning and authenticity.

Tales of Heart and Bone: Helping Cancer Survivors Tell Their Stories

I will be facilitating a group on Friday, May 30, 2014 from 8-10pm called Tales of Heart and Bone: Helping Cancer Survivors Tell Their Stories. This conference is held annually at Asilomar Conference Center in Pacific Grove. It’s a great group of people and the setting is beautiful.

The Northern California Group Psychotherapy Society is holding it’s 46th Clinical Conference at Asilomar May 30 to June 1, 2014. Join us at this exquisite coastal retreat, minutes from Monterey, for 2 1/2 stimulating days. Along with an intensive learning experience, there will be time to walk on the beach, socialize and network with colleagues.
Designed for group workers and mental health professionals at all levels of experience, this unique learning opportunity allows clinicians to participate in workshops led by master group therapists, and listen to lectures on important group and theoretical issues.  Presenters at the Conference include some of the best group therapists in the area as well as nationally acclaimed professionals. There are 30 workshops to choose from. The diversity of topics span clinical, social and cultural issues of interest to beginning and more experienced therapists, group workers and consultants.
11 CEUs are available to MFTs, LCSWs, and RNs. This course has been submitted to MCEPAA for possible approval for California psychologists
The Asilomar 2014 Conference Brochure and registration form is on our website NCGPS.org. You can download the brochure and register online. The Early Bird Discount will save you $50 off the conference fee if you register by April 14. We hope to see many of you make use of the Early Bird discount as early registration also helps by reducing our conference cost at Asilomar.

If you have any questions contact one of the Conference Directors Randy Dunagan rdunagan@mac.com or John Rochios jrochios@pacbell.net

When We Begin The Trek of Survivorship

This is a short excerpt from the introduction to my book on cancer survivorship.  I offer it as a reminder that even when we feel lost, we aren’t alone. Please feel free to contact me with your thoughts and feelings. Your story is important.

The black angel bending over me in the darkness of the cold, stark hospital room is the last to tend to me. Through an anesthesia haze I see the feathers of her wings lightly waving as she lights beside me. Her wing span touches the bare walls enclosing me as I lay alone in the small metal bed. A breeze blows on my face as I look up into her kind eyes. Having lived with death in the corner of the room for years, this presence is no stranger to me. Has death come for me as this luminous raven woman fluttering in disguise to trick me?

The angel’s wing touches my arm and becomes a hand, gently stroking my arm. She whispers, “I have been through this; you will get through this, too.” In that moment, she became the angel of mercy, the messenger of hope, the women who has traveled the path before me and has reached her destination, alive. Once again I sent death skulking back into the corner to wait.

Not today.

The nurse, the woman, the cancer survivor finishing my care, leaves feathers floating around me as I stare out of the drapeless window to an urban night sky with its wires, flashing signs and empty buildings awaiting the occupants who would arrive at day’s beginning. She would not return, but the touch of her winged fingers and her tale of resilience would remain, would be felt long into the years following this first encounter with the journey of cancer survivorship.

It only takes a few seconds to receive the news that you have been diagnosed with cancer.  Yet, from that point on your world has been changed forever. You enter a vast terrain of uncertainty, isolation and insecurity when you finish treatment for cancer. What is it like to face daily life now that you are someone who has been diagnosed with cancer? Fear of recurrence, anxiety and depression related to uncertainty, along with loss and financial difficulties, as well as concerns around sexuality are all a part of this new territory. You may feel isolated, alone and distressed. You have all the knowledge within you to understand and create your own healing but sometimes you need guidance to help you find where you are and support you in discovering where you want to go.

My hope is that this book will help you find your way through the wreckage of cancer so that when you land on new ground within yourself you will have ways to explore who you are as a survivor of the storm you have endured. No one handed me a map or installed a GPS when I left the treatment room. I just got in my car, drove to a bakery, purchased several pounds of pastry, and went home to start another day. I’ve talked to many people who have had similar experiences. This might sound familiar to you, too.

You can create your own survivorship care plan. It is possible for you to build an inner GPS that you can trust to show you where you need to be. I encourage you to draw your own map of the terrain you have inhabited to acknowledge the discovery of the ways you have been altered by your experience of cancer and document how you want to move on in your life. This deeply personal process of exploration is uniquely your own and does not bear the burden of proof of an evidence- based study nor does it rely on any particular faith- based philosophy. This plan belongs to you.

Friends Truly Do Anything

With love and gratitude to my friend, Wilma, who sent me this video.

And to all of those wonderful friends who support and love us through difficult times.

http://www.okcfox.com/story/25008587/friends-truly-do-anything-for-love-for-friend-with-breast-cancer#.Uyqe6-Ntpj0.email

Putting the Patient First

This is important work being done by the National Coalition for Cancer Survivorship.

Dear Cheryl,

We need your help today. Tell your member of Congress that cancer care planning can’t wait.

At a recent seminar co-sponsored by NCCS and the American Enterprise Institute, we asked cancer care experts how we can put the patient first in reforming the cancer care system. The answer? By focusing on cancer care planning as the trigger for better care.

While we hope for the cure, we must focus on the care. For more than 10 years we’ve been working towards creating a cancer care planning service in the Medicare program and improving cancer care quality for Medicare beneficiaries. Let’s put the patient first by guaranteeing a cancer care planning service that:

  • triggers a treatment decision-makingprocess between the patient and doctors,
  • ensures good management of cancer-related symptoms, and
  • facilitates the coordination of all of the complex elements of cancer care.

The Planning Actively for Cancer Treatment(PACT) Act (H.R. 2477) is pushing us closer to that goal, and we need your support.

Join us in working to improve the cancer care system.  Contact your U.S. Representative with a clear message:

CO-SPONSOR THE PACT ACT.

Thank you for your support.

Sincerely,

Shelley Fuld Nasso
Shelley Fuld Nasso

Becoming an “e-Patient”

As cancer patients, we have the opportunity to be better informed about our diagnosis, treatments, alternative paths to healing.  Being an educated patient can help us feel more empowered and involved in the quality of care that we can receive. This is an interesting blog post by a physician on the subject of the “e-Patient”.  I appreciate his open attitude.

The Awakening of the e-Patient: Are We Prepared to Engage?

Don S. Dizon, MD, FACP

05 Feb 2014 11:14 AM

I gave a talk recently to a group of my peers about addressing the needs of patients after a diagnosis of cancer, emphasizing points where transitions occur—from treatment, to end of therapy, surveillance, recurrence, and extending all the way up to the end of life—and how important it is to consider the entire journey of a person with cancer, from patient to survivor.

One of my goals of this talk was to address the need for oncologists to engage those actually diagnosed with cancer, the most interested of the “stakeholders.” I asked my colleagues if they had heard of a movement afoot in medicine, that of patient engagement, and whether they knew of folks like David deBronkart (alias e-Patient Dave). I was met with a few nods, but mostly none had heard of either. In truth, I was surprised to see that the patient engagement movement had not achieved greater familiarity with my audience.

On Google, the term “patient engagement” brings up over 48 million hits. There are even organizations that aim to spur on this evolution in medical care, such as theSociety of Participatory Medicine and the Center for Advancing Health. Patients who are engaged are often termed “e-patients.”  They have turned to the Internet to learn about their afflictions, read up on biology, treatments available, etc. They are interested in determining for themselves where to go for the best care, including what treatments are undergoing investigation. Indeed, they are demanding bettercare, and a more active role in their own treatment, as well as for those they love and advocate for.

The “awakening” of the e-patient has been tied to the seriousness of the medical condition one has been diagnosed with.  As described in the e-patient white paper, when one develops a more severe medical condition, they are more likely to adopt a higher level of medical knowledge enabling a more competent and in control persona, which is associated with greater assertiveness and autonomy with medical providers.  Indeed, anyone on social media is well aware of the on-line communities where peer-to-peer sharing of information and emotional support is ongoing on a weekly basis (shout-out to #bcsm).

These characteristics describe the patients I am seeing in the context of a routine clinical visit. More and more often, patients are coming in with fairly sophisticated questions about their pathology, treatment regimens, and clinical trial options. I have found myself rendering treatment recommendations only after I’ve sat with a newly diagnosed patient for some time discussing (and yes, even debating) the data. I have also come to appreciate that an evidence-based approach to many cancers must take into account the individual and that her preferences and goals are as important as the results from the randomized clinical trials we hold as the gold standards. Not only do I appreciate these conversations, I have come to anticipate them.


Ways to Help You Feel Better During Treatment

By

WebMD Feature                        Reviewed by Arefa Cassoobhoy, MD, MPH

Easing your pain, fatigue, or even itchy, peeling feet is part of your doctor’s job when you’re in treatment for advanced breast cancer. Don’t be afraid to speak up! There are many ways to treat the side effects of cancer drugs.

When you have advanced breast cancer, you are likely to be on some kind of therapy for many years. So doctors change their approach. They may use different drugs. They may use the same drugs, but in lower doses. Or they may use just one drug at a time, in sequence, instead of a combination.

Here are some of the side effects you might expect during treatment, and what you can do to cope.”I want to keep that chemo going indefinitely as long as the tumor is responding,” says Julie Gralow, MD, of the Seattle Cancer Care Alliance. “We try to get a dose that works against the tumor but that the patient can still tolerate.”

Hair Loss

Hair loss is one of those things that everyone expects from cancer treatment. But most of the single-agent chemotherapy drugs used for advanced breast cancer don’t necessarily make you lose your hair.

“I have patients who haven’t even told their friends or certain people in their lives that they are dealing with metastases, and you wouldn’t know if you looked at them,” says Virginia Borges, MD, of University of Colorado-Denver School of Medicine

But if you do have to use a type of chemo that causes hair loss, one source of help is a Look Good, Feel Better session, which offers free makeover sessions, beauty tips, and products for women with cancer, including advice on scarves and wigs.

Nausea/Vomiting

Many of the single-agent chemotherapy drugs often used for metastatic breast cancer tend to cause a lot fewer stomach problems than the more aggressive drugs, schedules, and doses used in early-stage cancer.

Fatigue

Feeling tired all the time, even after a full night’s sleep, can be a particular challenge. Your treatments go on for a long time without a break, and a deep fatigue can build up.

The single best thing you can do to combat fatigue, Borges says, is exercise.

“Research shows that women who get regular exercise during cancer treatment feel better and have more energy.”

You don’t have to push hard or go far. Three hours a week may be enough to make you feel better. Gentle workouts like yoga and brisk walks fit the bill.

Ask your doctor to also check for underlying causes of fatigue, like anemia and thyroid problems.

Pain or Tingling in Hands and Feet

Pain, numbness, or tingling in your hands and feet, called neuropathy, is a side effect of many drugs used to treat breast cancer that has spread.

Tell your doctor as soon as you feel symptoms. He or she may change the dose of your cancer medicine. Your doctor may suggest adding another drug to help with pain or tingling.

Peeling, Redness on Hands and Feet

Some drugs used against breast cancer can cause “hand-foot syndrome.” This is a sunburn-like redness, tenderness, and sometimes peeling on the palms of the hand and soles of the feet.

Borges recommends using thick emollient creams several times a day. At night, wear socks or gloves to bed. A B6 vitamin supplement may also help.

If this doesn’t work, your doctor may want to change your dosage or extend your “time off” cycle with the drug.

Mouth Sores

Mouth sores can be common with several kinds of chemotherapy. Borges suggests sucking on ice pops or ice chips and dabbing vitamin E oil on the sore areas.

Swollen, Heavy Arms or Hands

If you’ve had lymph nodes removed from your armpit or chest during breast surgery, you are at increased risk for lymphedema, a buildup of fluid in the fatty tissues just under the skin in that area.

To prevent lymphedema, try to avoid cuts, burns, constriction, and muscle strain on the affected side.

Some tips:

  • Have blood draws, shots, and blood pressure checks on the opposite side if possible.
  • Wear protective gloves when doing housework and cooking.
  • Use antibiotic cream on scratches.
  • Wear compression sleeves on long plane flights.
  • Avoid strenuous, heavy lifting on your affected side.

If you already have lymphedema, ask your doctor to recommend a specially trained physical therapist who can ease the swelling and give you compression garments, exercises, and special bandages.

Getting Cancer Care Support

Cancer affects everyone who is involved with the patient. Whether in a crisis or on an ongoing basis, it is stressful to cope with illness. It’s important to know that you don’t have to do this alone.  Check for local resources online.  Here are some for the San Francisco Bay area.

Charlotte Maxwell Complementary Clinic

www.charlottemaxwell.org/

Cancer Survivorship ProgramUCSF Helen Diller Family 

cancer.ucsf.edu/survivorship Friday, February 7, 2014

Getting Cancer Care Support

By Heather Millar

support

As I’ve written many times, we have a family friend who lives across the street and has metastatic lung cancer. Several neighbors, including me, regularly bring food to him and his partner. He’s a retired music teacher and pianist, so I know that one neighbor recently gave him a sheet music collection of Beethoven pieces. Through an open window, I can hear him playing them from time to time. One of his sisters has come to help take care of him for the duration.

He has lots of support and help from family and friends. Yet still, home health aides visit him several days a week. They help with errands. They pick up medicines. They help him bathe. They change linens. They walk the dog. They do light housekeeping. They do whatever needs doing.

Anyone who’s had cancer, or who’s going through it now, knows that sometimes just sitting in an easy chair and trying not to think about mouth sores or nerve pain is all a patient can manage. What happens if the cancer patient used to be the family cook, like my neighbor, or the family errand-runner/appointment maker/financial planner, like me?

That’s when you need help. Networks of friends from church, school or work can sometimes step in. There are several websites like Lotsa Helping Hands, to help organize friends and family.

But as patients age, those networks may dwindle. My neighbor is in his 80s. Many of his contemporaries don’t have the energy to step in, as much as they might like to do so. And sometimes there’s just too much to do. That’s when it might be time to call in professionals to help ease the burden.

Does that sound too expensive? You may be surprised to learn that often patients can get financial assistance for this kind of help. The U.S. Department of Veterans’ Affairs,MedicareMedicaid and the Older Americans Act provide funds for these services. Not everyone may meet the criteria for assistance, but it’s worth a try.

The U.S. Administration on Aging maintains an Eldercare Locator. Medicare maintains a Home Health Compare site, where people can compare Medicare-certified home health agencies in their area. You can also search for resources in your area on the American Cancer Society website.

What’s available may differ from place to place, but it’s worth checking out. Let us know your experience with cancer support services here.

Posted by: Heather Millar at 8:37 am