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Breast Cancer Awareness Month Blog: Day 5  -- Dense Breast

10/5/2018

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THE BREAST CANCER AWARENESS MONTH BLOG:  DAY 5 

The Actual Dance is a play that presents the events of the year 2000 from the point of view of the spouse of the woman going through breast cancer.  From diagnosis to her life as a survivor, Susan Simon, my wife has endured.  She is an unlikely survivor, at least according to her doctors.  What is presented in The Actual Dance  is the story of that experience from my perch.  The husband.  A man whose experience with breast cancer has been that it never turns out well.  Moreover, death has been somewhat of a constant companion in my life.  My memory of loss goes back to when I was 4 years old, with grandparents, aunts, uncles and siblings, as well as parents, being lost to various diseases, but mostly cancer.  My reaction to Susan’s diagnosis in retrospect is not surprising.  Of course, in my mind, it never was going to end well.  But I’m getting a little ahead of the story.

Day 5: Dense Breasts: “Don't worry. ...  Remember, you had a mammogram just two months ago and it was normal."  The Actual Dance 

These are my words after Susan tells me that her internist "felt something funny" in her right breast and wanted Susan to have that “something funny” biopsied.

Not to worry, right?  Susan at that time had three previous biopsy tests. She had been watching herself closely. Doctors had been testing her tissue for about a decade.  We were doing the right thing.  What was there to worry about, and there was not even a lump!  And yes, she had a mammogram just two months previously.

So yep, there was me telling Susan not to worry. I think I was really talking to myself.

What we didn’t understand then was that Susan had what is known as “dense breast.”  The trouble was with the technology.  There was not good technology to see her type of cancer as it was growing in the 80’s and 90’s.  Yes, there were suspicions.  I can even remember that the test results from the 3rd biopsy several years earlier were sent to the Mayo Clinic for a second opinion and they bothered to say: “very interesting, watch closely and keeps us informed.” Her doctor then remarked that this was unusual.  The truth is standard mammography can miss up to 50% of the cancers in very dense breasts, and Susan had very dense breast.

The good news is that today there is new technology that can much more accurately see dense breast tissue and to see breast cancer when it first appears.  Women need to be Aware of their breasts in terms of their make-up and risk profiles.  Most importantly, they need to be checked and tested and what to ask for based on your unique physical make up.  And so do their husbands!  The theme of this months’ posts is the role of the man in her life, though it is really about the whomever the life-partner might be in that person’s life.  We need to know the intimate details of our mate’s body and health as well as the things they think and like. 

Stats of the Day:   High breast density is common. In the U.S., 40-50 percent of women ages 40-74 have dense breasts.  And almost 8% of women aged between 40-74 years have extremely dense breasts. ScienceMag

Task of the Day: October is time to get your breast exam scheduled, if not performed.  When you do make sure YOU KNOW if you have dense breast and what the latest technology is to look at YOUR BREASTS.  There has been some news lately about technology Molecular Breast Imaging for dense breasts.  Ask about it.  In some States the law requires that your doctor inform you if you have dense breast.

​Resources of the Day:  Here are two great web sites devoted exclusively to dense breast. One. Two.

The Actual Dance:  Performances.   Donate.
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Breast Cancer Awareness Month Blog Day 2:  Awareness?

10/2/2018

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The Actual Dance is a play that presents the events of the year 2000 from the point of view of the spouse of the woman going through breast cancer.  From diagnosis to her life as a survivor, Susan Simon, my wife has endured.  She is an unlikely survivor, at least according to her doctors.  What is presented in The Actual Dance  is the story of that experience from my perch.  The husband.  A man whose experience with breast cancer has been that it never turns out well.  Moreover, death has been somewhat of a constant companion in my life.  My memory of loss goes back to when I was 4 years old, with grandparents, aunts, uncles and siblings, as well as parents, being lost to various diseases, but mostly cancer.  My reaction to Susan’s diagnosis in retrospect is not surprising.  Of course, in my mind, it never was going to end well.  But I’m getting a little ahead of the story.
 
Day 2: “Oh, and one more thing, Sam.  The doctor wants me to see a surgeon to check out something she felt in my right breast.  Now Sam, she doesn’t think it is anything to worry about, it just felt funny to her.” The Actual Dance

Dumb luck? No. Awareness. Susan’s breast cancer was discovered because her internist during a routine check-up “felt something funny” in her right breast and arranged for a biopsy.

​Susan had a mammogram just two months earlier and the internist knew that.  It would have been easy enough to ignore that “funny feeling” to a bad memory.  Or just to be in a rush and wait until the next check-up.  The internist though was “aware” – totally aware of Susan’s record and history, aware of what the tissue should feel like and aware enough to know the possibility.  Safe, not sorry, so to speak. 
Awareness is not just for patients.   Is your doctor Aware?

Stat of the Day:  Breast Cancer is one the most often misdiagnosed, missed, cancers.  According to recent studies. (Click here and here)   The reasons for missing are often assigned to inadequate tools and lack of time and resources.

Task of the Day:  Make a note for your next doctor appointment. Check with your doctor to see how “Aware” he or she is of breast cancer developments and techniques.  It is a two-way process and important for you and your doctor to know your breast risks.

Resources of the Day:  First is a book I love and have recommended every year. How Doctors Think, by Dr. Jerome Groopman.  It provides insights into how your doctor thinks.  One of the suggestions, which I live by in my own relationship with my doctors, is to always ask: “What else could it be.”  Here is a nice video by the Doctor who founded Breastcancer.org that seems to reinforce this point, she places most of the burden in the conversation on the patient to make sure the doctor is looking in the right direction and doesn’t forget anything.

The Actual Dance: Performances.   Donate.

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Breast Cancer Awareness Month Blog:  Day 27  Magic Words

10/27/2017

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The Actual Dance  as a play presents the events of the year 2000 from my point of view as the spouse of the woman going through breast cancer.  Now, seventeen years later, it is apparent that I did not fully understand how deeply the experience impacted me.  It took me 12 years to write the story, so to speak, and the last nearly 5 years I have been telling it through performances of the play.  Every October I blog daily to help in raising awareness and to share elements of the story that I hope are of value to those who read these blogs. (All quoted lines are text from the play.)

Day 27:  Magic Words: “Instead he called it a metaphor and said it is beautiful.”

The Actual Dance is a simple story of a man who is confronted with the possibility -- perhaps the probability -- of holding his wife of 34 years as she takes her last breath as she succumbs to breast cancer.  He is desperate to know “how do I do this?”   As portrayed in the show and in my real life I could NOT imagine that I could do it.  

An initial effort to figure that out, a session with a Rabbi, didn’t provide an answer.

Next, I went to see the psychiatrist whom I had seen off and on for 20 years, usually through various life transition (turning 50 etc.).  And as I spoke I once again cried.  Indeed, it was the only time I sobbed.  Sobbed as I described to him this real “place” – the ballroom – and the music and the dance and the image in my head of Susan and I dancing to a crescendo of intensity as she dissolved into a wisp of a white cloud and disappeared --- forever.

I asked for medicine, and “instead he called it a metaphor and said it is beautiful.”

In an instant I changed.  “It never occurred to me that the dance was beautiful. I have always feared it as tragic and devastating.”  His words were magic.   “Beauty, dignity.”  In an instant I want from fear to a place of acceptance and understanding.  “Rather than fearing the actual dance, I think I can get ready for the dance.”

“I now understand that The Actual Dance will be the ultimate consummation of our Love.”

Stat of the Day: The death rate for Non-Hispanic Black Women was 42% higher between 2011 and 2015 than for Non-Hispanic White Women according to this study.

Task of the Day:  Post something on your Facebook page or Tweet something about October being Breast Cancer Awareness Month and encouraging every woman to check her breasts.  

Resource of the Day: The Society of Breast Imaging has this online Resource Center that enables you to set up reminders about breast care, such as scheduling a mammogram and to send a nudge to a friend as well!  
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The Actual Dance:   Performances.   Donate.
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Breast Cancer Awareness Month Blog Day 1

10/1/2017

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​THE BREAST CANCER AWARENESS MONTH BLOG:  DAY 1
 
Breast cancer has had a defining impact on my life.  When I was 19 years old I met the family of the woman I was to marry.  Not long after that I learned that her mother had breast cancer.  Susan and I decided the next year we wanted to get married – it was 1965 – and neither family was particularly enthusiastic about the idea.  “The decision to let us get married I think was more about wanting Susan’s mother [Bertha Kalmans] to see her youngest daughter wed than thinking it was a good idea for two twenty-year old kids to get engaged.”   (The Actual Dance) 
 
On August 23rd, 1966, Susan and I got married. And indeed, on August 4th, 1967, Susan’s mother passed away from her metastasized breast cancer. Shortly before our 1st Anniversary.   And it was later that same year that my mother, Frieda Simon, was diagnosed with breast cancer and five years after that on September 8th, 1973 that she passed away from a metastasis to her brain.
 
It was the Spring of 2000 when Susan was diagnosed with breast cancer. From the Spring of 2000 to the Summer of 2001 Susan’s diagnosis changed radically as the doctors tripped over themselves in expecting good news and finding increasingly bad news.  Then came the moment when everyone went dark and it became clear that the medical establishment expected Susan to follow her mother.
 
What was my response?  How did I spend that time and what did I do?  That is the story told in the play I wrote in 2012 and continue to perform.  The play, The Actual Dance is a theatrical presentation of my journey in the year 2000 with Susan as she went through her bout of advanced breast cancer.   It has now been presented about 150 times in front of nearly 2500 people, and it has become what “I do.” 
Let me say that it took me many, many years – about 12 – to understand the deep impact that the breast cancer experience with Susan had on me.  In retrospect, I wrestled with the experience in the deepest possible way.  It forced me to confront the most fundamental existential questions of life. What does life really mean? What is love?  “How do I do this? How do I dance the last, the actual dance with Susan?” (quote from the play) Something I couldn’t imagine doing and how I discover that “I can do this.”  

My own life journey has taken many turns starting in 1970. I started working with Ralph Nader as a lawyer. I was in the army. I created a public affairs firm in Washington, DC and ran it for 25 years always thinking I was involved in activities that helped consumers and the public interest.  Even appearing periodically on shows like Face the Nation, Phil Donahue and Oprah Winfrey and enjoying a profile in the New York Times as early as 1971.   Yet today as important or as impactful as any of that was, none of it feels as meaningful as this journey of taking this piece of performance art to audiences who once they experience the show seem themselves to be transformed.
 
My mission in life now is to take The Actual Dance to all those who need to see it; and to bring it in a way with the art, music and energy that will help others see and experience their own journey with breast cancer, or any cancer or life-threatening disease, differently. 
 
Breast Cancer Awareness Month
calls me to “up my game” in this work and to join the effort to increase public awareness of this disease and to offer insights and links to perspectives that focus on what I now call “the other person in the room.”   That is people like me “the love partner” and that can be a spouse a child even just a friend. 
 
So, each day, as I have the past three years, I will blog about Breast Cancer Awareness.  I will attempt to offer a “stat” or some not well-known fact about Breast Cancer or Cancer itself. Suggest a task in honor of Awareness month, and then point to some resources or other organizations in the field. Indeed, this year I

​hope to focus a bit more on what others are doing.

Stats of the Day: According to breastcancer.org 252,710 new cases of invasive breast cancer are expected to be diagnosed in women in the US, along with 63,410 new cases of non-invasive (in situ) breast cancer.  About 2,470 new cases of invasive in men in 2017. 

Task of the Day: Start the month off by performing your own breast exam and scheduling, if you have not done it all ready, a mammogram.  Here is a great little tutorial on YouTube that is suitable for all ages.

Resource of the Day: Here is a great resource for materials about Breast Cancer Awareness Month.  You can add something to your Facebook profile, a badge for your website, even draft letters asking members of your organization to take action! https://healthfinder.gov/nho/octobertoolkit.aspx

The Actual Dance:  Performances.   Donate.
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You can follow these daily blog posts here.

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BREAST CANCER AWARENESS MONTH -- DAY 1  SAY A NAME

10/1/2016

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October is Breast Cancer Awareness Month.  The Actual Dance is about many things.  Its source or core rests in breast cancer.  

In October in recognition of Breast Cancer Awareness Month I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.

Day 1:  “I did not have breast cancer. I do know that.  But I seem to be the only person who knows how this story is going to end.”   The Actual Dance

My relationship to breast cancer is based on the impact that breast cancer has had on our family – our referring to Susan and me.   Susan’s mother, Bertha Kalmans, and my mother, Frieda Alfman Simon, both died from metastatic breast cancer.  My sister Marion Simon Garmel is a survivor.  Susan’s sister-in-law Roz Kalmans is a survivor.

The Actual Dance tells a story of MY journey in response to Susan’s diagnosis of stage 3 breast cancer in 2000.   Given our family history you now have of my mother and Susan’s mother, what do you think my reaction was to Susan's diagnosis?  If you have seen the show you know. 

Stats of the Day: According to breastcancer.org 246,660 new cases of invasive breast cancer are expected to be diagnosed in women in the US, along with 61,000 new cases of non-invasive (in situ) breast cancer.  About 2,600 new cases of invasive in men in 2016. 

Task of the Day:   SAY A NAME OUT LOUD.   Take a moment to think about breast cancer. Who in your family has it or had it?  If no one, who do you know who has it or had it? Now SAY THERE NAME OUT LOUD.  Here I go:    Susan (not my Susan) & Barbara.  

Resource of the Day:  Cancer Support Community In July 2009, The Wellness Community and Gilda’s Club Worldwide joined forces to become the Cancer Support Community. By helping to complete the cancer care plan, CSC optimizes patient care by providing essential, but often overlooked, services including support groups, counseling, education and healthy lifestyle programs. Today, CSC provides the highest quality emotional and social support through a network of more than 50 local affiliates, 100 satellite locations and online.  Find a local Cancer Support Community affiliate here.

The Actual Dance:  Performances.   Donate.
​
You can follow these daily blog posts here.

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Welcome to October Breast Cancer Awareness Month -- Day 28

10/28/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is about many different things.  It is about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really is.   It is about a lot of things. 

In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.  (All quoted lines are text from the play.)
 
Day 28   What Love Really Means. 
 I finally understood with just a few words from the psychiatrist I hadn’t seen in maybe 20 years that The Actual Dance was going to be the ultimate consummation of our – Susan and My -- love.  “His words have a dramatic effect on me.”   Yes, the prospect of losing the love of your life is terrifying.  “I … feared it as tragic and devastating.”   Instead, with just two words “it’s beautiful” my heart and soul waken to what love really means.   The privilege and honor of holding in my arms the person whose essence and soul I share as she leaves this world and she does so sensing and knowing that she is loved.  Earlier in the show I talk about how Susan and I met (noticing each other first in 1962) and in 1965 deciding to get married.  “I wonder if two 20 year olds really understood what love meant,” is my line.  On reflection of course the answer is no, they could not.  It has taken me nearly 50 years to understand that what love really means.  It means knowing the “beauty and dignity” inherent in being with the person you love most in the world as they take their last breath.  When circumstances do not allow us to be physically present at that time, when someone or something else takes that life away or we are far away, The Actual Dance still takes place, just in different ways and different forms.  I do believe that the love inside of you not only goes with you, it also goes with the one we love.

Stat of the Day: Men get breast cancer too.   About 2,350 new cases of invasive breast cancer are expected to be diagnosed in men in 2015. A man’s lifetime risk of breast cancer is about 1 in 1,000.

Task of the Day:  Say “I love you” to the person(s) you love most in the world at least three times today and every day:  In the morning, in the evening and at bed time.

Resource of the Day:  I found a song about “What Love Really Means” Check it out I enjoyed it and I think you will too.


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Welcome to October Breast Cancer Awareness Month -- Day 26

10/26/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is about many different things.  It is about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really is.   It is about a lot of things. 

In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.  (All quoted lines are text from the play.)

Day 26:  Magic Words:   Two days ago I spoke about the experience with a Rabbi that turned out to be neither the right time nor the right place to have the right talk.  “I need to talk to someone else.”   It turned out to be the “psychiatrist I had seen every now and then for the past twenty years.”  I told him about the imagery of the ball room, the orchestra and the dance and “how real it was to me,” hoping that he would give me medication to make it go away “and change the future by changing what was going on in my head.  Instead he called it a metaphor and said it was beautiful.”  His words had a dramatic effect on me.  It was like magic.  It had never occurred to me that the dance was “beautiful.”   Immediately, I react and understand that “The Actual Dance will be the ultimate consummation of our love.”  

Stat of the Day: 40, 290 women are expected to die from breast cancer this year or an average of 110 per day.

Task of the Day:    An encouraging word.  Talk to someone who is struggling with cancer and let them know how much you love them.  That might just be magic for them!

Resource of the Day:  Words can have a dramatic effect on our loves.   Here are some reflections and suggestions based on this idea.  Secular.  Faith.








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Welcome to October Breast Cancer Awareness Month -- Day 23

10/23/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is about many different things.  It is about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really is.   It is about a lot of things. 
In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.  (All quoted lines are text from the play.)
 
Day 23:  Talking to Someone.  
“I need to talk to someone,” I realize after we find the lump on Susan’s chest.  I am walking around the house “early on the Sunday morning after we found the lump, wondering what it is going to be like being alone.”  I admit that those Sunday mornings were “the times I tended to get sad and depressed, because Susan was still upstairs asleep and didn’t see me.”  Among the scariest moments for people who face the loss of a longtime partner is facing the prospect of “being alone.”  Being alone is not merely the fact of living a solitary life in a house that was once filled with family or a spouse; it is also sense of being alone in the universe, of having lost “the other half of my whole.”  (See Day16)  In performing the show one of the most frequent comments I hear from people who have lost their mates is about the “silence” of early mornings.  I realized the need to talk and it was through the talking I found the ultimate peace with the journey that I would need.  It wasn’t easy though.  It didn’t work the first time.

Stat of the Day: Susan and I went on our first date in 1964 --- 51 years ago.  And we first “noticed” each other though we never really met in 1961 54 years ago! 

Task of the Day:    Call, visit or email.  Your “voice” can be a miracle drug for someone who is experiencing “being alone.” Silence can be oppressive.  This can someone who has lost a loved one, someone who so going through their own cancer or are living with someone who is going through cancer.

Resource of the Day:  The American Psychosocial Oncology Society has an information and referral help line:  Toll Free 1-866-276-7443 (1-866-APOS-4-HELP).







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Welcome to October Breast Cancer Awareness Month -- Day 17

10/17/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is, among many different things, about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really is.   It is about a lot of things. 

In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.  (All quoted lines are text from the play.)
 
Day 17:
The Ballroom   My journey with Susan in the year 2000 occurred in two places.  One physical and real – here and now -- the other someplace else:  “An empty grand ballroom” with “high ceilings and a long, beautiful highly polished blond wood dance floor.  Brilliant spotlights.  A platform off to the side large enough for a good sized platform large enough for 40 or 50 or more musicians.”   I don’t know what the ballroom really is except to say that it was real to me at that time and through that process.  A metaphysical place that existed in a different dimension in the universe, yet accessible and available as I needed it to be for my soul.  Yet, I could be “Afraid and confused by the sounds and smells and images.  The sense of being somewhere else and here at the same time.”   I believe that during the hardest times of breast cancer, or any cancer or illness, when the news is the darkest and when the fear is the starkest we humans need to find that “place within us and around us where angels sing on rays of light and love pours forth from the heart of the universe.”  (Heart of the Universe, Snatam Kaur and Peter Kater) It is where we go to get ready.  It is somehow more peaceful and nearer to that which is divine in our world.  Yet, it can be scary, especially if we do not understand it.  As the news about Susan continued to become more negative – Stage 3, Estrogen receptor negative, Her2neu positive, in 10 of 17 lymph nodes tested and then a new lump on her chest post surgery.   I found myself in the Ballroom more and more frequently.  And I could often hear and see the orchestra.  “It was real, and it was everywhere.”

Stat of the Day:  In 2008, 51.4% of poor women ages 40 and older had a screening mammogram in the past 2 years compared to 72.8% of women who were not poor.

Task of the Day:   Sign up for the Avon Walk for Breast Cancer either in your area or in any of the cities it is offered.  Susan has walked for 13 years and I have walked for four.  It is not because it raises money to help poor people become aware and get mammograms (see the statistic above).  It also gets you fit and that keeps you healthy and increases your survival rates.

Resource of the Day:  Exercise is important for breast cancer patients and survivors.  Check out this guide for exercising if you have or have had breast cancer.



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Welcome to October Breast Cancer Awareness Month --- Day 8

10/8/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is, among many different things, about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really is.   It is about a lot of things. 

In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.  (All quoted lines are text from the play.)

Day 8:   Rituals help.   There are certain rituals in the Jewish community that are designed to support people who are ill and their families.   The one I love most is the ritual of the Misheberach, the chanting of a prayer at our Friday night services.  “It is the tradition in our Reform Jewish synagogue for the Rabbi to read out loud at Kabbalat Shabbat, Friday night services, the names of congregants who are ill.  The congregation then chants a prayer asking God for the healing of body and soul of those who are in need of such healing.” That is the line in The Actual Dance that introduces this ritual.    Even though Susan and I regularly attend Friday night services, we never had one of our names read on the list.  The Friday night that Susan’s name was going to be read for the first time was different, at least for me.  “We sat in the same seats we had been sitting the past 27 years, listening to other peoples’ names read out loud.”   Hearing Susan’s name read out loud for the first time was a very emotional experience for me.  It reminded me of how fragile life was and made me wonder what it might be like sitting in that same seat alone, without her.  Yet it was comforting to know that everyone around us was on our side, also thinking about and asking God for the healing of Susan’s body and spirit.    One time during that year during Susan’s chemotherapy she wasn’t feeling up to going to services.   I didn’t know what to do.  Somehow it felt wrong not to be in the pews when Susan’s name was read out loud.  It happened that I was in a meeting with the Rabbi that week and I asked her what to do. She held my hand to let me know that it was okay not to be there, that everyone else would be there for her.

The Misheberach tune we like is the one written by the late Debbie Friedman.  You can hear her sing it here.

Stat of the Day: In 2015, there will be an estimated 60,290 new cases of breast carcinoma in situ diagnosed, 83% of which will be ductal carcinoma in situ (DCIS) and 12% lobular carcinoma in situ (LCIS).

Task of the Day:  Listen to music.  Music can calm the mind and open the heart.  By itself and especially in quiet places it can transform your heart and bring peace even in the most troubled times.  Check out some of my favorites:  Snatam Kaur  Shastro’s Shamans Healing  Loreena Mckennitt

Resource of the Day:  Check out “MisheberachOnline” for a full array of resources for comfort and healing.

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    Sam Simon

    Samuel A. Simon is the playwright and performer of The Actual Dance. 

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