The following story is an adaptation of a Buddhist story from the Mahayana Sutras. I give credit to my friend and fellow-storyteller Elisa Pearmain who shared this story which will be included on her next CD.

This story helps me move forward after the Newtown, CT tragedy. It is a reminder that our actions however small have an impact on the fabric of the whole world.

Once Indra the Hindu God of the heavens, invited the Buddha to visit his heavenly palace. Wanting to decorate the Palace to impress his guest, he ordered that thousands of diamonds be brought. Each gem was then sewn into
a knot on a giant net. The net was hung over the walls and ceilings of his palace.

When the Buddha entered Indra’s Great Hall and caught site of the net of jewels he beamed with delight, dancing to the center of the room. There he turned round and round smiling. “This net is perfect, Indra. It captures the nature of reality so well.” He said, “Every jewel is lit by the same light, and in every jewel is held the reflection of all the other jewels.”

Then he Swept to the side of the room calling, “ Come Indra, look.” As Indra came close he pointed to one diamond a gave it a gentle flick. “See,” he beamed pointing to the changing reflections all around the room, “when one diamond is moved it changes the reflection of every other one, not just the ones closest to it. How beautifully this describes the truth that all beings are connected and our actions do affect one another.”

The Buddha looked at Indra more seriously now, “This is why we must practice compassion and kind action for all beings, for they are as much a part of us and our world as we are of theirs.”

The great God Indra wept with his new understanding of interconnectedness and oneness. “This net is not meant to decorate my palace alone,” he said. “It must be seen and understood by all beings.” He gathered up the great net in his arms and took it out onto the balcony of his palace. There he flung it out into the heavens for all to see.

And every night its beautiful diamonds shine all round the world, to remind us of our oneness and inter connectedness with one another.

Today, I had a basal cell carcinoma removed from my chest in my radiated field just at my clavicle.  It’s small. It’s not a cancer that spreads or threatens life in any way.  The day before my scheduled surgery, I was telling my Mom that I need to tell my children.  They are both at college, cramming for tests.  She told me, “It’s nothing.  I’ve had several removed myself. Why bother them?”

I said that I have a few reasons why children should be told, no matter what age they are:

  • If anything should happen to me, that less than 1%, my children would be angry at me that I didn’t tell them.  I don’t want to be changed forever or even die with them angry at me.
  • It’s a learning opportunity about what to do when someone goes through a scary event.  I expected both to call me after the procedure to make sure I was OK, and they did.  In fact, my daughter wrote to me before she went to class to wish me luck and to be sure I called her when I was done.
  • If I include my children when I’m going through a tough time, they will do the same with me. We are family.  We only have each other.  We depend on each other.  It’s important to go through things together, whether good or bad.  It makes a person feel important to be informed and included.  It makes children feel they are an integral part of my life, whether it’s about a vacation or a surgery.
  • Lastly, when they hear/see my positive attitude, it influences how they will deal with a similar circumstance in their future.
  • My mother rescinded her comments and agreed with me wholeheartedly :)

    I’d love your comments about this.  Have you had a good or bad experience when sharing a ‘diagnosis’ with children?

RSVP right here for convenience :)

A heart to heart with Joann

Joann needs to hear stories of survival and overcoming adversity as she continues to heal from her losses.  She is the manager of the Comprehensive Care Clinic at the University of Louisville School of Dentistry, but to the students, she is the go-to person for emotional distress because she coped with more than most human beings can imagine.  After my lecture, she hugged me saying, “Your will to survive inspired me beyond words.”  I asked her to join me for lunch.

Joann smiled through her tears as she told me about her ‘miracle’ daughter conceived against all odds and how she lost her to a brain tumor at age 19.  Just before her daughter passed away, her beloved husband got ill.  His health went downhill and a few years ago she sold their home and moved in with friends so he could have the 24-hour care he needed until his passing.

Believe it or not, I had heard this story before.  Ronni survived the passing of her ‘miracle’ daughter , followed by her husband, a physician who died of a broken heart when he couldn’t do anything to save their only child.

Neither woman has ever met another who had survived the same.  Both were excited to speak to the other.  I was excited to help make it happen!  But, I can’t take all the credit. Dental student Jake Masters, president of the American Student Dental Association Louisville Chapter, found me online in search of a speaker to inspire the student body. Jake made an extra effort to encourage Joann to take an hour out of her day to attend the presentation.  Because of his urging, she attended.

At first, I thought, my non-Jewish friend who wished me a ‘Happy Yom Kippur,’ needed a better understanding of the most notable Jewish holiday. After all, it’s not a joyous event where you wish friends a ‘Happy’ anything.  It’s a reflective day.  It literally means, Day of Atonement, the day we ask for forgiveness and offer to forgive, despite the personal challenge.  It’s about repairing relationships. It’s about acknowledging where and how we can improve ourselves.  The prayer in the photo is one we say over and over again. It’s the day of judgement where the Book of Life is opened and you hope your name is signed in there for another year.

Today, I learned that maybe my friend wasn’t so far off!  Apparently, an interpretation from ancient times says the word ‘Kippur’, or it’s plural, ‘Kippurim’ can mean ‘with’ Purim.  Purim is a Jewish festival commemorating the defeat of Haman’s plot to massacre the Jews.  There are costumes, merriment and we give gifts of food and treats to one another.  Purim literally means ‘lots’ or ‘lottery’.  When we win the lottery or win against a government official who wants to massacre a people, we feel immense joy, we celebrate. So, on Yom Kippur there is an element of celebration of the joys in our life.

Now, I have a whole new perspective about what I used to think was a somber, solemn day where we deny ourselves food, a basic need, to inspire us to work harder on ourselves.  We are obligated to recognize our joys!  The people in our lives who provide unending joy.  Sometimes joy is short-lived: seeing a rainbow or accomplishing a task.  But we need to acknowledge the joy that comes from nourishing and nurturing friendships with family and friends.  We are challenged to consider how we share our joy with the world.

I feel a deep-seeded overwhelming joy for every day of life I’m given and the many people in my life who enrich me.  It is my obligation to share the joy I feel and bring it into the world, so, as the Rabbi said, we can rise up like the angels and sing Halleluyah so the world will rejoice.

 

 

 

 

I was deeply touched by Stephen Flatow, a loving father who speaks from his heart about his daughter Alisa, 18 years after her murder in the Hamas suicide bombing known as the Kfar Darom bus attack.  She was 19 years old and on her sixth trip to Israel, a country she loved. She assured her father that her weekend getaway to a beach resort in Gaza was safe; she was traveling with friends and took a public transportation, all rules her father required her to follow.

When the New Jersey native heard on the radio that there was a terrorist attack in Gaza, his heart skipped a beat.  Then he got a phone call from a parent of his daughter’s friend saying the girls were on the bus that was attacked and the other two girls made it back to Jerusalem, but they didn’t know where his daughter was.  He got on the phone and eventually found the hospital where she was being treated for a head injury. The doctor told him, “Come as soon as you can.”

He was escorted through the Israeli airport and taken by government officials directly to the hospital.  As soon as he arrived, he was asked “Will you please consider donating her organs?”

This wasn’t an easy answer for an orthodox Jew whose religion dictates that you cannot take a life to give a life.  To donate organs, you have to be ‘alive’ so blood is still pulsing through them.  He also knew that if Alisa were taken off the ventilator, she would not take another breath. When is a person dead? When the brain is dead or when the heart stops beating?

Six of her organs were donated and three of them were accepted, regenerating three lives in the country she loved.  Stephen M. Flatow became an activist for terrorist victims’ rights and organ donation.  Needless to say, it was an honor to meet him.

Can you be articulate and have no voice?  The answer is YES. Today, I met Itzhak Brook.  He is a survivor of throat cancer and required a full laryngectomy.  Despite having no voice box, he produced an articulate whisper amplified by an excellent mike system.  He spoke at the David Nasto Oral Cancer Awareness Walk. One message he imparted was the importance of seeing an ENT subspecialist.  He saw colleagues whom he trusted for three surgeries until he finally went into NYC to see a subspecialist, recognizing quickly the vast difference in expertise.  Even though he wasn’t sure he wanted to live life without a voice, he kept going because he didn’t want to leave a legacy to his children of  quitting in the face of adversity.

I learned something new, too.  I asked him if he could go swimming.  He can dunk up to his chest, but no higher unless he has a Larchel, which rhymes with snorkel intentionally because it’s a snorkel for laryngectomees.

His wife Joyce is a special person too, and I was honored to meet them both.

Do you have any idea how much radiation you have had cumulatively? According to a recent article in the NY Times, CT scans deliver 100 to 500 times the radiation associated with an ordinary X-ray. 1.5 percent of all cancers that occur in the United States are caused by radiation exposure and CT accounts for the bulk of it.

Dr Lauer makes a statement worth pondering: “Most physicians who order imaging tests experience no consequences for incurring costs for procedures of unproven value. On the contrary, they or their colleagues are paid for their services, and their patients don’t complain because the costs are covered by third parties. Patients are pleased to receive thorough evaluations that involve the best cutting-edge technologies.”

Now for the most disturbing statement in the article: ‘There is an enormous variation — sometimes tenfold or more — in the amounts of radiation to which patients are exposed from the same procedure at different institutions, or even at the same institution at different times.’

For those of us who have had radiation for treatment for cancer, this article can be alarming. But remember, the bottom line is, it’s not about the length of our lives, but the breadth of it. Enjoy each day as it comes!

Do you like being referred to as a ‘survivor’? Is there another term you prefer?  When did you decide you deserved the title?

Definition of ‘survive’:  To carry on despite hardships or trauma; persevere: families that were surviving in tents after the flood.

After reading this definition, ‘survivor’ isn’t empowering, but simply a state of being.  For some, that is all living beyond cancer is.  For others, living beyond cancer becomes an opportunity for learning gratitude, courage, team work, communication….oh and so much more!  Many ‘survivors’ claim their life has more meaning, more depth, greater love than ever before.

I like to call myself a ‘Sur-Thriver.’

Definition of ‘thrive’:  To grow vigorously; flourish:

Elisabeth Kubler-Ross describes coined the Five Stages of Grief: Denial, Anger, Bargaining, Depression and Acceptance.  Trisha Torrey, a patient advocate, coined a sixth stage, Proactive Survivorship.

A proactive survivor:

  • Overcomes grief and blame.
  • Decides how the tragedy will affect him/her
  • Improves the quality of their own life and others’ lives.
  • Tells their story, not a victim’s feel-sorry-for-me story, but a tragedy-turned-triumph story showing strength to move beyond and giving hope to others.
  • Rejoices instead of blames; inspiring others by example.

If you are a ‘survivor’, how do you perceive yourself?

A loaded question!  It must be answered sensitively, taking into consideration the child’s age and circumstance relating to cancer. A friends nine-year-old son was told, “Grandma is taking medicine that makes her hair fall out.” Really? Do you think a 9 yr old hasn’t ever heard of cancer? On the school bus, 9-yr olds hear about everything you can’t imagine. Surely, cancer is not a foreign word. If children aren’t told the truth, they can imagine far worse scenarios. Feelings of fear are often bottled within.

A child needs to be told the truth. Maybe not the whole truth, but enough considering the child’s age. Always offer to answer honestly any questions a child may have. Teachers and coaches need to be informed so unusual behavior can be addressed.

Don’t “hide” a cancer diagnosis from children – “seek” out the Talk4Hope book series! Mr. C Plays Hide & Seek makes cancer less scary for children, empowers children to cope with their feelings and offers tools for communication. Through vibrant photos and endearing illustrations, readers understand the life of cancer from the perspective of the cell itself. Charming and personable, Mr. C shares the rules of his game without arousing needless fears. Different doctors are introduced who look for cancer and try to beat Mr. C at his game. Recommended for ages 4-12.