“It’s Not Fair!”

Holding on to the belief that life is fair is another way to avoid the truth of uncertainty.  Years ago I was in a local market and overheard a conversation between a mother and her little boy. The boy was angling for something he wanted, and quite persistent in his requests. Mom held her ground (she had, obviously, taken parenting classes) firmly stating no. He wailed, “This is not fair!” She slowly turned to him, bent down, looked him square in the eyes and said, “Sweetie, this is about as fair as it’s going to get.”  We aren’t given the guarantee of fairness and while it is compelling to wail “it’s not fair” at cancer, it’s just another way to be taken prisoner by fear.

Embedded in our attachment to fairness is the holding onto the illusion that being good will somehow insure that we will get what we want or, at least, rescue us from disaster.  If I exercise, eat right and keep a positive outlook on life I won’t get cancer and, certainly, I won’t get it again.  Facing the letting go of our childhood belief in fairness is one of the most difficult tasks of growing up. Facing our own mortality and the lack of control around that is one of the most difficult tasks of adulthood.  No wonder we all have some fantasy of being Peter Pan and flying off to Neverland.  If I never grow up, does it mean I won’t die?

“I wanted a perfect ending. Now I learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.” – Gilda Radner

Delicious ambiguity, a curious and open mind, and learning to steer through darkness with no stars, are all facets of living with uncertainty. Going beyond coping or managing uncertainty and moving into an exploration of who you are at this juncture of your life is a different way to look at your needs as a cancer survivor.

This is an excerpt from my upcoming book, Surviving the Storm: Helping Cancer Survivors Tell Their Stories

Sharing a Song Together

“He who sings scares away his woes.” – Miguel de Cervantes Saavedra

Each day my dog and I take a stroll past a small home in our neighborhood.  On the porch of this place is a cage where two small cockatiels make their own little home. Covered by a maroon blanket faded and worn by the sun and years of use, they sit on their perch together. One of them, I know now it’s the male whose name happens to be Pepe, is particularly vocal and filled with lilting song.  I began stopping to speak to him, to sing with him.  In a short period of time we had established a simple, one line musical pattern that has become our call to one another.

As I approach him I begin our call.  Sometimes he sees me coming and begins the call before me.  When I forget the exact tempo or muff a note, he reminds me immediately of the correct tune.  Some days he runs up and down his perch, turning his head, bowing to me in excitement. At other times he is more quiet, sleeping or maybe just not feeling like talking that day.  That’s ok, we all feel like that from time to time.  Regardless of his mood, I look forward to seeing him each day.

Having a common language, singing a special song to one another is a reminder of a language not of words but of a common sound, our shared experience.  For those of us who have taken a walk down the cancer road there is also a common song.  Each tune is unique to who we are, it is our own song.  However, there are familiar notes we share and singing with each other, to each other and for each other brings us together in a place beyond culture, class, race or gender.  Singing out to one another when we are in pain or when we are sad or when we find happiness and joy connects and supports us as we trek along through cancer and beyond.

Wishing you melody today …

Is It Time To Stop Waiting?

“Are you ready?” Klaus asked finally.
“No,” Sunny answered.
“Me neither,” Violet said, “but if we wait until we’re ready we’ll be waiting for the rest of our lives, Let’s go.”
― Lemony SnicketThe Ersatz Elevator

In the world of cancer, we are always waiting for results.

After we enter the world of post treatment … we continue to wait … often fearful that the cancer will return when our backs are turned, our fingers slipping off some undefined pulse that we cannot constantly monitor.  We live with the reality that there is no cure for cancer.  We hope that the  odds will remain in our favor and that, in the end, we will “beat the house.”

Whenever I think about waiting, about watching, about the uncertainty of being alive, I think of one of my favorite plays, Waiting for Godot by Samuel Beckett.  It’s a story of staying in one place, waiting … waiting … waiting.

{last lines]

Vladimir: Well? Shall we go?

Estragon: Yes, let’s go.

[they do not move]

The characters are stuck in their waiting and meanwhile life is continuing. This is the danger of getting stuck in waiting for what may or may not happen. I can certainly tell myself a scary story and what I know is that these stories only take me away from living my life fully in each moment. Whatever time we have is much too precious to waste.  Sometimes we just need to go.

How do you keep yourself waiting?

Are you holding yourself back from being fully alive?

When you think about moving on, “going for it”, what comes into your mind?

Go for it!

I’m Scared, I’m Sad, I’m Angry … Is That OK?

“You are what you think … geez, that’s frightening.” Lily Tomlin

From the moment you are told that you have cancer, that the biopsy was positive, that those shadows in the MRI were malignant, that the scan “lit up” with the colors of disease, your breath sucks in and stays there, landing in the pit of the stomach where it will sit, unbelieving and stunned.

What happens now?

What happens next?

You feel fear …

You feel anger …

You feel sad …

You don’t feel anything … you’re numb …

And the fears keep appearing and reappearing, spinning around in your mind, making your heart race, palms sweaty, mouth dry.  The room is spinning while all around you people are trying to be helpful, to support you with positive messages, with hope. Oh uh, you think … I don’t feel so positive … will this make me sicker?  Am I not doing this cancer thing right?

Yes … unfortunately, you are because all of these feelings and thoughts are authentic responses to the reality that cancer has impacted your body, your mind, your life.

It’s vital to allow these so-called  “negative” feelings.  Whether your choose to express them, write about them, keep them inside of yourself … you have them, they are real … they are thoughts and feelings … those won’t kill you.

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.

Be gentle with your fears … let them speak, scream and cry  … and then move on.

Happy Mother’s Day!

“ A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.”

Agatha Christie

I’ve been fortunate in my life to have meaningful work, a strong marriage and deep friendships. I’ve traveled to many parts of the world, met interesting and inspiring people, studied with those who are masters in their fields and had a whole lot of really fantastic adventures along the way. But by far the most meaningful experience I have had is that of being a mother.

On Mother’s Day we honor our mothers whether they are still alive or at this point beings we remember in our hearts and minds. Our grandmothers along with the matriarchal ancestors we never knew stand behind us in our lineage as women, as mothers. We also kind of expect that there may be a homemade gift from school that will be brought home for this occasion. Sometimes we might not be quite sure exactly what this object is but, as it has been created by our little child (with the aid of a teacher, paper, clay or crayon), it is a treasure. Later in life we’re just happy if that kid gives us a call … or sends a text.

This Mother’s Day I am grateful that I have been given the wonderful opportunity to be a mother. I was tremendously lucky to “draw the long straw” when my son came into the world.  He is bright, sensitive, talented, perceptive, kind and extremely funny.  Being his mom has taught me  about myself, about courage, loyalty and devotion.  Honestly, I’ve loved every moment …

When I was diagnosed with cancer eight years ago I wondered if I would see him graduate from middle school.  I hoped I would see him graduate from high school. I wasn’t sure if I’d be here for either one. I feared that I would leave him too soon, too young. Today I’m anticipating watching him graduate from college in another year. I’m blessed to now be hoping that I’ll see him have meaningful work, a strong marriage, deep friendships … and that (not too soon, mind you) I might see a grandchild come toddling up my driveway clutching some little blob of a loving gift on Mother’s Day. I didn’t leave too soon, both for him and for me. I’m grateful that we both got more time … I’m always hoping for even more.

Happy Mother’s Day to all of you and to your children.  Hope you get pancakes and many more days with one another.

Cancer Is Not Your Fault

You didn’t want to have cancer.  When someone asked you what you wanted in your life, odds are good you didn’t say, “hey, I think I’d like to have some cancer!”  And when the waiter took your order I’ll bet you didn’t say, “hmmmm … how’s the cancer today?  Think I’ll try it.”

Yet all too often guilt and self-blame show up for many of us who have been diagnosed with cancer.  Maybe we should have lost more weight and eaten better. Perhaps that second glass of wine was the tipping point.  Is my attitude positive enough?  Did I cause this cancer by some errant behavior or negative thought pattern? Self recrimination replaces self support and we find ourselves being punitive when we are most vulnerable.

Today I invite you to be kind to yourself.  When harsh judgments haunt you and you notice that you are putting yourself down … stop … take a breath ..

Tell those thoughts to take a hike, make them go away and , if necessary, get firm and tell those nasty beliefs to SHUT UP!  It may take some time to change these patterns but it’s worth the time and energy it takes to come to a place where you treat yourself with kindness and love.

You did not cause your cancer.  It’s not your fault.

Buy yourself a flower to honor, respect and love yourself … just because …

This is dedicated to my mother, Dorothea Krauter, who taught me about the kindness of giving a flower to someone  … just because

Taking a Break from Cancer

“Each person deserves a day away in which no problems are confronted, no solutions searched for. Each of us needs to withdraw from the cares which will not withdraw from us.” Maya Angelou

How do you disappear from cancer?  How do you get away – even when you can’t take some fabulous vacation or spend a week being pampered at the spa? When you’re in the midst of treatment for cancer you may feel like your identity is CANCER PATIENT.   Who you are as a person with a life outside of the infusion room or the radiation department can seem far away and difficult to remember.  Who am I beyond this world of cancer that constantly surrounds me?

You are more than a cancer patient. It’s important to find ways that help you to remember and possibly rediscover yourself.  Here are some simple ideas that may help you take a break from the cares of cancer.

  1. Listen to your favorite music.
  2. Watch a movie or television program that distracts you.
  3. If you feel strong enough — take a walk.
  4. Read a book.
  5. Watch a podcast – I enjoy watching TED talks.
  6. Hang out with friends and have a good laugh!
  7. Find ways to relax like meditation, massage, a warm bath.
  8. Spend some time doing something that is creative for you.
  9. Take a nap.
  10. Do something that you really enjoy!

If any of you have other suggestions or ideas, please feel free to comment below.

Musings on My Annual Mammogram

“Whoever thought up the word “Mammogram”? Every time I hear it, I think I’m supposed to put my breast in an envelope and send it to someone. ”
– Jan King

I went for my annual mammogram yesterday. It’s been 8 years since the mammogram that showed it was extremely likely that I had breast cancer. Since then all of the follow up mammograms have shown dense breasts and tissue affected by surgery and radiation but no cancer. For me, like many of you, the mammogram is just the appetizer for the breast MRI that I will have 6 months from now.  As time progresses it’s no longer cause for panic but still … the shadow lingers.

Over the years I have had call backs and more photos taken of “suspicious areas” and yet I admit to feeling vaguely mistrustful of the accuracy of my annual mammography experience.  Like today, I go into a very pretty breast center and the young woman in the dressing room is shoving some food down her throat and talking on the phone with her back to me … she’s doesn’t seem too concerned about any anxiety I might be feeling. Then when I put my robe on I notice a little stain on the sleeve … a couple of tomato seeds … bleach. Oh well, I think, we’re not here for  group therapy or a fashion show but I kind of wish the robe was clean and the young attendant was a bit more interested in me than in the sandwich she was gobbling.

I was quickly called in by the technician who was pleasant enough but, again, a bit disinterested. Of course, I can’t expect everyone to laugh at my little jokes when I get dyslexic around which hand to put on the machine while I’m struggling to breathe. She’s efficient and dismisses me promptly with the standard “thanks for coming” card.  Your welcome, I guess, but there weren’t even any snacks served much less any tasty drinks. They’ll be in touch … another wait.

Did the technician pay enough attention to the photo shoot of my breasts? I hope so but I’m really not that sure. Will the phone ring? I hope not. Can I totally believe the form letter I hope to receive saying “all clear”? I don’t know.

What are your thoughts and feelings about the experience of your mammogram? Do you still feel fearful?  Are you embarrassed to still be concerned?  Feel free to comment, I’d love to hear.

In closing I offer a section of a piece that Marlo Thomas wrote for the Huffington Post which offered suggestions of preparing for a mammogram. In my opinion, it’s pretty much always good to have a laugh!

HOW TO PREPARE FOR A MAMMOGRAM (many thanks to HysterSisters.com)
Many women are afraid of their first mammogram, and even if they have had them before, there is fear. But there is no need to worry. By taking a few minutes each day for a week preceding the exam and doing the following practice exercises, you will be totally prepared for the test, and best of all, you can do these simple practice exercises right in your home.

EXERCISE 1: Open your refrigerator door, and insert one breast between the door and the main box. Have one of your strongest friends slam the door shut as hard as possible and lean on the door for good measure. Hold that position for five seconds. Repeat (just in case the first time wasn’t effective).

EXERCISE 2: Visit your garage at 3 a.m. when the temperature of the cement floor is just perfect. Take off all your clothes and lie comfortably on the floor sideways with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Switch sides, and repeat for the other breast.

EXERCISE 3: Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Have the stranger press the bookends against either side of one of your breasts and smash the bookends together as hard as he/she can. Set an appointment with the stranger to meet next year to do it again. You are now properly prepared!

How Social Media Can Connect Cancer Patients and Survivors

When I had cancer I was surprised by how much support I received from others in an online group. I’m still in contact with some of these people – most of whom I have never met face to face. I continue to be a part of several online communities and find a great deal of comfort and enjoyment in the relationships I have formed there.  I recommend that you be sure the group is legitimate and has some form of moderation so that conversations are respectful and caring.  Amazingly enough the friends you connect with from afar can seem like people you have known for a long time.

This  article and video was published in the April 8, 2015 issue of Cure Magazine

Dr. Deanna Attai on Why Cancer Patients and Survivors Should Explore Social Media

Deanna J. Attai, breast surgeon and assistant clinical professor of surgery at the David Geffen School of Medicine, University of California, in Los Angeles, shares ways social media can help cancer patients and survivors

“Cancer can be very isolating,” she says. “Even if you may have friends and family and a good support system, it’s nice to be able to talk to someone who’s been going through the same thing. And you may not be able to do that in a local community support group.”


When Do We Rest? When Do We Push Forward? Questions about Cancer Treatment

“I’m not sure that you actually have the ability to recognize when you’re tired, because you’re so used to pushing through it,” the doctor told her.

This statement is from an article in Cure Magazine about Joan Lunden’s experience while she was in treatment for Triple Negative Breast Cancer.  When I first read it I was struck by the sensitivity and perceptiveness of Lunden’s doctor. This doctor seemed to know and understand Lunden as a person not just another patient.  Thinking about this brought back my own path through cancer treatment and how I pushed myself to make life as normal as possible. This was, not surprisingly, nothing new …

At first I felt kind of sad, maybe even a bit forlorn. Did I miss an opportunity to take care of myself in a more gentle, kind way? Would some of the “collateral damage” like the peripheral neuropathy and tiredness I still experience be lessened if I had rested more?  I spent some time confronting my old habits of  thrusting myself forward when I was tired or sick.  It was actually helpful to reflect on the question, “when do you rest, when is it important to keep moving?”

But then I watched the PBS series by Ken Burns, “Cancer: The Emperor of All Maladies” based on the book by Siddhartha Mukherjee.  I was deeply moved by the patients who fought so bravely for their lives and even more touched by the researchers who toil year after year, decade after decade as they look for a cure for cancer.  It reminded me of why I struggled so much to keep life “normal” for my family.  It validated my choice to continue working as a therapist in my private practice not only because it helped me immensely to focus on others but also because it prevented my family from even more severe financial distress.  When I thought about these things, it felt right that I had pushed forward despite how ill I was.

And so, I end up, once again, not with a clear answer to the question of “when do you rest, when do you push” but, indeed, more questions …

I’m curious what you think and feel about this? What did you do during treatment? Looking back,  would you have done things differently?  Please feel free to comment below.