Posts Tagged ‘Battling Cancer’

Visiting Candy’s Place to Learn about Battling Cancer

Thursday, February 4th, 2016


Visiting Candy’s Place to Learn about Battling Cancer
Written by, Tony Mussari
Edited by, Kitch Loftus-Mussari
Photographs by, Tony Mussari
Copyright, 2016, Mussari-Loftus Associates, LTD

“The standard treatments for cancer are not meant to heal, but to destroy.” Andreas Moritz Cancer Is Not a Disease -It’s a Survival Mechanism.

On a damp February afternoon, our Face of America journey took us to Candy’s Place in Forty Fort, PA. This is an extraordinary Cancer WellnessCandy's Place Center where cancer victims and their loved ones can find compassionate encouragement and support.

Kitch and I have experienced the kindness and good will of the people at Candy’s Place. They were helpful in 2011 when Kitch was being treated for breast cancer. For the past five years, Kitch and I have participated in several healing events sponsored by Candy’s Place.

On this special evening, Nick Pokoluk, the author of Scourge of Book_6340the Ages: Glycation, and Diabetes, Cancer, Heart Disease, Alzheimer’s and Aging hosted an information session in the board room about diet and cancer. Nick has been in the pharmaceutical business for 45 years. He is respected for his comprehensive research techniques and his determination to help people deal with health issues caused by glycation.

Motivated by the experiences he had when his sister was diagnosed with cancer, he is taking his message to audiences large and small in an effort to start a conversation about seldom discussed causes of cancer.

What follows here are 20 starred thoughts from his presentation at Candy’s Place.

1. Lifestyle changes are important. We must focus our attention on diet as a cancer agent as well as a cancer adjuvant treatment.

Healthy Choices

2. We must make changes in our diet that are knowledge and fact based.

3. There are ways to use research based information to make people improve their cancer resistance.

4. We must understand and accept the fact that cancer will change your life forever.

5. 580,000 people in the United States will die from cancer in 2016. The American Cancer Society estimates that 1.68 million Americans will be diagnosed with some form of cancer this year.

The majority of all cancers are not inherited. Two out of every three cancers are lifestyle related. We need to spend more time examining and talking about lifestyle and environmental causes of cancer.

7. The three pillars of health and longevity are: Diet, Physical Activity Pillars of Good Healthand Mind/Body (Attitudes).

8. The harsh reality is this: one out of every five people diagnosed with cancer today is a person that has had at least one previous cancer diagnosis. 

9. Chemotherapy may be lifesaving, but it also makes a patient susceptible to cardio-vascular disease, neurological disease, cognitive and emotional issues and functional issues.

10. There are 50 trillion cells in the human body. Every day .0001 percent of cells are mutated. One of the miracles of the human body is that every cell knows what it should be doing, and every cell communicates with every other cell.

11. Growth factors are drivers of cancer. There is a correlation betweenseed and soil_6347 body weight and cancer risk. We must learn to make good choices and manage our weight to minimize risk.

12. The best food choices are whole foods plant based diets, low fat and dairy and modest protein content.   It should also be low in simple carbohydrates, (reduced added sugar, and devoid of sugary drinks).

13. Rely on organic foods as much as possible. Reduce salt intake to 1,500mg a day. Alcohol should be reduced or eliminated.

14. The best food choices are: vegetables, mushrooms, beans and legumes, berries, whole grains and one piece of fruit a day.

15. Consider some very healthful additions such as spices, herbs, cocoa, raw walnuts and almonds, and raw pumpkin seeds.

Nick_audience

16. Avoid high protein intake from animal sources. You get the best protein from vegetables.

17. Be aware of this important discovery. Bovine growth hormones are linked with cancer initiation in humans and they are banned in 27 countries.

18. Every animal product has glycated proteins, and glycation destroys DNA and HDL.

19. The browning that occurs in grilling, baking, broiling, frying, pasteurizing and smoking produces glycation.  Increase your use of boiling, steaming, sautéing in vegetable broth for food preparation.

20. Cancer is not only caused by DNA mutation. Cancer is caused by glycation, inflammation, unopposed growth factors activity, and immune system dysfunction.

At the end of his presentation, Nick gave everyone in attendance a colorfulHandouts_6489 graphic entitled The Nutritional Rainbow, a copy of Healthy Eating for Life: Food Choices for Cancer Prevention and Survival published by the Physicians Committee for Responsible Medicine and his contact information. He volunteered to address any questions during telephone and personal consultations at no cost.

Nick Pokoluk is a man on a mission. He wants to help. He wants to serve. He wants to comfort people who are suffering, and he is willing to inconvenience himself to bring his alternative message to anyone who will take the time to listen and learn.

He understands the insightful and poignant words of Jeannette Rankin:
“We can take people as far as they want to go, not as far as we want them to go.”

Nick Pokoluk is a classic example of America at its best.

The people at Candy’s Place reflect the light of America at its best. They Three images_6483help people believe they can beat cancer. They give people the hope they need to beat cancer and they enable the cancer patient, and the caregiver to imagine a joyful and peaceful life together after cancer.

Thank you, Nick Pokoluk.

Thank you, Penny Cunningham.

Thank you to the staff and volunteers at Candy’s Place.

Please provide feedback to:

tony.mussari@gmail.com

Heroes Without Headlines: Brenda Lispi

Tuesday, August 27th, 2013

Remembering Brenda: A Radiant Face of America

Written by Tony Mussari
Edited by Kitch Loftus-Mussari
Copyright 2013
Mussari-Loftus Associates, LTD

Love is stronger than death even though it can’t stop death from happening, but no matter how hard death tries it can’t separate people from love. It can’t take away our memories either. In the end, life is stronger than death.Norman Cousins

A wonderful woman with the heart and soul of an angel made her way to heaven last week. She was caring,Brenda 1smcompassionate, competent, and conscientious. Her heart was a giving heart. Her soul radiated love of family, friends, community and God.

Kitch and I met Brenda Lispi in 2007. She, her husband Ray, and her son, Lee, visited our garden to discuss an episode of Windsor Park Stories about Lee and Joe Paterno.   On that day, we became fast friends.

Shortly after the visit we produced an episode entitled “Dreams.” It featured Lee Lispi talking about the many ways Joe Paterno influenced his life. The story resonated with viewers, and it became the launching pad for our friendship with Brenda.

For more than a year, Brenda battled an insidious form of brain cancer. She did it with courage, determination, dignity and class. She did it in a way that endeared her to everyone who knew her.

Those of us who were privileged to know Brenda are saddened and troubled. Again and again we ask the question, “Why do the good die young?”  “Why did this woman who did so much to help others leave us at 58-years young?”

No answer satisfies. No explanation fills the void. At times like this we turn to the words of poets and philosophers for comfort, context and closure.

Combining John Paul Moore’s poem Drinking From The Saucer with Brenda’s words helps us fill the void created by Brenda’s passing. 

I’ve never made a fortune,
And I’ll never make one now
But it really doesn’t matter
‘Cause I’m happy anyhow

Anyone who knew Brenda Lispi felt the embrace of her happiness and contentment. Her beautiful smile was the hallmark of her kind and gentle heart. Her words were always affirming:

Thank you so much Tony and Kitch.  The picture is breathtaking !  Our conversations inspiring – I am content and will get through this with all your help.  Lee says hello and is happy that we are in touch- he wishes you well. Brenda

As I go along my journey
I’m reaping better than I’ve sowed
I’m drinking from the saucer
‘Cause my cup has overflowed

I can’t thank you and Kitch enough for all your support and encouragement… I am belated in sending a birthday and thank you card but it is on my list.  I am 33.3 5 complete in treatments.  That means four more weeks of traveling to Philadelphia 5 days a week, plus my sister was visiting from England last week so I have been busy.  The only side effects I’ve had so far are weight gain from the steroids and walking difficulties-from steroids.  I will soon have a PT and OT eval.

I hope to soon visit your garden again- it is looking fabulous and "peaceful." Brenda

I don’t have a lot of riches,
And sometimes the going’s tough
But with kin and friends to love me
I think I’m rich enough

I have had some setbacks this week but I received more encouragement from people like you and Kitch to get me through.  I lost my hair this week but it will grow back.  My gait is sluggish so I will receive a PT and OT eval-The steroid side effects are hurting me the most with climbing stairs walking and weight gain but I am tolerating the iv and oral chemo as well as the radiation.  Today I am 50% complete for this phase of treatments – only 50% more treatments to go through- busy being away and handling insurances and correspondence-hopefully I will get caught up.  Thanks for keeping me posted. Brenda

I thank God for the blessings
That His mercy has bestowed
I’m drinking from the saucer
‘Cause my cup has overflowed

Brenda was a gratitude person. These are words she shared with Kitch and me in 2012:

Thank you Tony for this wonderful tribute to Joe Paterno. He was a great influence on Lee who has turned out to be an outstanding young man. Of course, as his parents we are biased, but this is what we heard from others as well. Lee, Ray, Tina and I thank you for the opportunity you gave Lee in 2007 to share his story and the influence Joe had on him even when his dreams were changed.  Joe taught Lee that it’s important how you react to changes in your dreams and what you learned and do from there to be a better person. Brenda

He gives me strength and courage
When the way grows steep and rough
I’ll not ask for other blessings for
I’m already blessed enough

Happy New Year Tony and Kitch, I am trying to learn the Kindle Fire and at the same time I trying my daughter’s Tina’s patience as she is teaching me.  For now, I am back at the desk top using my left hand since my right side is still paralyzed but I receive home health therapy 2 x’s week-making progress and using my left side.  I also started new chemo drug last week as a third tumor is growing-it is an aggressive cancer but I am not ready to give up so much to live for -so much to do and see and help- so many people like you both to hear of your accomplishments-like in Gettysburg-let me know… Brenda

May we never be too busy
To help bear another’s load
Then we’ll all be drinking from the saucer
When our cups have overflowed

Brenda was never too busy to help others. In fact, her life and her work was all about helping others.

Those who were blessed to know Brenda Lispi will be nourished in her death by drinking from the saucer of the memories of a life lived for others, a life lived with kindness and generosity, a life that clearly speaks to what America is on its best day.

Thomas Merton was right:

Death is someone you see very clearly with eyes in the center of your heart: eyes that see not by reacting to light, but by reacting to a kind of a chill from within the marrow of your own life.

We will miss you Brenda, but we will never forget you. Kitch and I are better people because we knew you. We will carry your beautiful and inspirational Face of America in our hearts until our journey comes to an end.

Please Provide feedback to: tony.mussari@gmail.com

If the Walls Could Talk: Thanksgiving 2012

Wednesday, November 21st, 2012

If the Walls Could Talk: Thanksgiving 2012

Written by Tony Mussari
Edited by Kitch Loftus-Mussari
Copyright 2012
Mussari-Loftus Associates
All Rights Reserved
The Face of America Project
faceofamericawps.com

To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven.  Johannes A. Gaertner

Wellstones of Gratitude

The walls in the room where I work are covered with symbols of affirmation, encouragement and gratitude. On the difficult days they give me hope, on the good days they remind me of my responsibility to be the best person I can be.

On this day before Thanksgiving, I decided to sit back and think about what they tell me about life, love, happiness and gratitude. 

From the Heart of a Child

By far, the largest collection of mementoes came from my grandchildren.

Thank you for the GIANT marshmallows, chips, pretzels Cracker Jacks and the popcorn.  I really like them.  Love Julia

Dear Papa Tony and Grand Kitch, Thank You, PJ.

To our Grandpa, We love you.

I always marvel at the honesty of children.  They say what they mean and they mean what they say.

Through the Eyes of a Child

Pictures of my children are everywhere. They capture various stages of growth and development.

For some reason, my eyes always land on two pictures, one with my daughter, the other with my son.

Both shots are joyful. Both scenes are memorable.

In each picture the eyes and the body language say everything about a perfect moment of happiness, joy and security.

These are the moments a parent lives for, hopes for, and prays for. These are memories parents cherish forever, because they help us navigate the bumps in the road of life.

Classroom Moments

Two of my favorite notes were handcrafted by students. Both speak to gratitude. One reads, “Thank you for coming to our classroom.”  The other addresses what I like to call a learning attitude, “Thank you for asking me those questions. I liked it.”

Notes like these remind old teachers like me that teaching is a noble profession, and teachers have an obligation to help students grow. To do that, we must make an effort to grow in the ways of the heart and mind every day of our life.

Art from the Heart

A number of the items on the walls are original works of art:

Two paintings of Windsor Park by Sue Hand;

A magnificent photograph of the Amish given to us by Bill Coleman;

Children’s art designed by Julia and PJ;

A beautiful representation of the American flag that welcomed people to one of our screenings at the North Plainfield High School;

A picture taken with the North Plainfield cheerleaders at the Memorial to the Heroes of Flight 93;

A handcrafted gratitude note designed by Adriana, one the students in our Gettysburg Project.

Collectively these images spell HOPE, LOVE, GRATITUDE and SERVICE

Friendship

Messages from friends fill in almost all of the empty spaces on the walls. Some are handwritten, others are typed and a good number are cards with inspirational sayings:

Thanks for being so nice, so thoughtful and so giving;

Thank you for the phone call;

Tony. I thought deeply… prayerfully about you and Kitch…

Wishing you a day that makes you feel good…

I can’t begin to tell you how your kindness through taking the time to write this letter has elevated my spirits in a way that monetary bonuses and superficial job titles could never affect;

Hope is stronger than death.

Each one speaks to a quality or a value that makes life worth living.

The Face of America

A very select group of mementoes represent magic moments from our Face of America journey. They include:

A map of our travels;

A postcard from Mount Rushmore:

A note from a student who attended the guest lecture I gave in Julie Marvel’s class at, St. Mary’s College in California;

A post card from Little America, Wyoming; and a gift bag that proudly proclaims the Little America philosophy, “A Tradition of Excellence Since 1934;

A gift bag from the book store at the University of Iowa, a place of great significance in my life;

A picture of an outdoor advertising sign featuring Abraham Lincoln and these words, “Failed, failed, failed And then… PERSISTENCE, Pass It On, Values.com.

Kitch’s Magic

The final group I will mention without any elaboration. They are handwritten notes from Kitch. They speak to her beautiful heart and her wonderful spirit. They reflect the light of her love and partnership.

Every day I am surrounded by these images. Needless to say for me they are priceless. They help me bring a gratitude mindset to my work, but more important they remind me to affirm others, to care about others, to share with others and to appreciate the opportunities I have, and the freedom our country guarantees everyone who lives here.

To paraphrase the words of William A. Ward, God gave us 86,400 seconds in this day. I took a few of them to stare at the images on my wall, and they reinforced the words of the ancients:

A thankful heart is not only the greatest virtue, but the parent of all the other virtues. Cicero
Nothing is more honorable than a grateful heart. Seneca

Kitch and I agree with those who believe that “Gratitude makes sense of our past, brings peace for today and creates vision for tomorrow.”

Thank you America for the freedom, justice and liberty we enjoy.

Thank you North Plainfield for giving an old teacher a new classroom.

Thank you Gettysburg for giving life and meaning to the words of Abraham Lincoln, “We cannot escape our History.”

Thank you Dan Kopen, MD, Sal Lawrence, MD, David Greenwald, MD, and Norman Schulman, MD for giving Kitch a second chance at life.

Thank you dear friends and relatives all, you light the way with profound and poignant examples of caring, kindness, and goodness. That’s what Thanksgiving is all about, and that’s what America is on its very best day.

Please provide feedback to:
tony.mussari@gmail.com


The Love of a Listening Heart

Monday, February 13th, 2012

Defining Love on a Day of Love

By Tony Mussari
Copyright 2012
Mussari-Loftus Associates
The Face of America Project
faceofamericawps.com
tony.mussari@gmail.com

“The person who risks nothing, does nothing, has nothing, is nothing, and becomes nothing. He may avoid suffering and sorrow, but he simply cannot learn and feel and change and grow and love and live.” Leo Buscaglia

Finding Love

Waiting for the Valentine’s Day sunrise of 2012, I have been thinking about love. I know we all need it.  Some of us were fortunate enough to have found it in our homes and classrooms during the early days of our journey.

I never studied love.  I learned what I know about love by watching my parents love each other and their children. It was love deeply rooted in discipline, loyalty and responsibility.

At one point in my life I was a great admirer of “Dr. Love,” Leo Buscaglia.  His poetic words helped me at a time when love was in short supply, or at least the road rashes of life made me think that way.

Today as I approach the Indian Summer of my life, I have a much better appreciation and understanding of the healing power of love.

If truth be told, life has been the greatest teacher in that regard, and last year I earned my Ph.D. in love.

Watching, helping and caring for Kitch while she battled cancer gave me more opportunities than any man deserves to think about the essence of love.

Permit me to share what I learned with words that are both old and new, words that best illuminate that mystical, and often elusive, virtue that can heal the empty places in our life.

Defining Love

Love is all we have; the only way that each can help the other. Euripides

Love is the beauty of the soul.  Saint Augustine

Fortune and love favor the brave. Ovid

Love conquers all. Virgil

Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.  Marcus Aurelius

Who so loves believes the impossible. Elizabeth Barrett Browning

Woe to the man whose heart has not learned while young to hope, to love – and to put its trust in life. Joseph Conrad

The art of love is largely the art of persistence.   Albert Ellis

Where there is love there is life.   Mahatma Gandhi

You will find as you look back upon your life that the moments when you have truly lived are the moments when you have done things in the spirit of love. Henry Drummond

Living a life of Love

And what, I ask myself, is the spirit of love?

The obvious answer speaks to caring, sharing, helping, giving, enhancing, affirming and living for someone other than yourself.  Yet there is another nuance of love that seldom gets much attention.  It’s the beauty and power of a listening heart.

Sister Joan Chittister’s poem "A Listening Heart" says all one needs to know about that life sustaining aspect of love.

There is a magnet in a seeker’s heart
whose true north is God.
It bends toward the Voice of God
with the ear of the heart
and, like sunflowers in the sun,
turns all of life toward
the living of the Word.

This listening is pure of pride
and free of arrogance.
It seeks wisdom—
everywhere, at all times—
and knows wisdom by the way
it echoes
the call of the scriptures.

The compass of God implanted
in the seeker’s heart
stretches toward truth
and signals the way to justice.

A truly listening heart knows

that we lose the chance for truth
if we give another—any other—
either too much, or too little,
control over the conscience
that is meant to be ours alone.

And yet, at the same time
mutual obedience,
real listening,
holy listening
forever seeks the spiritual dialogue
holy wisdom demands.

This listening with the heart
to the insights of another
is not the obedience of children,
or soldiers,
or servants,
or minions.
It is the obedience given to a lover
because of love alone.

During Kitch’s battle with cancer we experienced what “Dr. Love” called  the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring from family, friends, physicians, nurses, and medical technicians. These acts of love turned our life around and taught us how to listen to the challenges we faced with our hearts.

From now until we reach the other side, we intend to transmit the light of love to others who travel the long dark gravel road called cancer.

May your Valentine’s Day be blessed with the love of a listening heart.

Tony & Kitch Mussari
Producers
The Face of America Project
Please provide feedback to
tony.mussari@gmail.com

(A listening heart was excerpted from the book The Monastery of the Heart by Joan Chittister, OSB. It was used with permission: benetvision.org)


Battling Cancer with Hope and Determination

Wednesday, October 12th, 2011

A Special Evening at Candy’s Place

By Kitch & Tony Mussari
Copyright 2011
Mussari-Loftus Associates, LTD

“Home is not where you live, but where they understand you” Christian Morgenstern

Anyone who has experienced the anxiety, agony, pain and uncertainty that comes with a diagnosis of cancer knows full well the need for words of comfort, help and encouragement.

They also know that cancer victims, and their caregivers, need safe havens where they can experience what Kitch calls “No ‘C’ Days.”

In our little corner of the world, we are fortunate to have such a place. It is officially known as The Center for Cancer Wellness of NEPA. We prefer its more affectionate and personal name, Candy’s Place.

On this October evening, Kitch and I went to Candy’s Place to listen to Dr. Dan Kopen talk about breast cancer.

Dr. Kopen and Candy’s Place are about as close as any cancer patient will get to perfection. Dr. Kopen represents the best in breast cancer diagnosis and surgery. Candy’s Place offers cancer patients a kind, thoughtful, warm and welcoming environment for recovery. You feel it the moment you enter the building, and it stays with you long after you leave.

During our visit, Dr. Kopen emphasized 10 important points about breast cancer.  His presentation began with hope and it ended with reassurance.

1. Cancer is not the disease it used to be.

2. In the 1970s, it was a death sentence. That is not the case today.

3. Advances in digital mammography enable doctors to diagnose early stages with greater accuracy and frequency.

4. Cancer is a scary word; the earlier the diagnosis the better then prognosis.

5. Much of what you hear about breast cancer is not all good information.

6. More younger women are being diagnosed today.

7. There are 300 ongoing studies about breast cancer.

8. There is a correlation between the environment and cancer, but it cannot be pinpointed accurately.

9. To effectively battle breast cancer the mind and the body must be in sync.

10. A second opinion is one of the best ways to align the mind and the body to combat breast cancer. A patient should not leave any stone unturned in making a decision about the proper treatment. Her physician should do everything possible to get her the best treatment available.

That is precisely what Dr. Kopen did for Kitch.  He encouraged, and he facilitated a second opinion at Fox Chase in Philadelphia. That visit made all the difference for us.

We returned from our visit with Dr. Laurie Goldstein with a very specific plan and renewed confidence. The physiology and psychology were aligned thanks to the wonderful people we met at Fox Chase.

Dr. Dan Kopen is a genuine from-the-heart as well as the mind kind of doctor.  He has treated 3,000 breast cancer patients.  He has performed 2,000 breast cancer surgeries. His credentials are impeccable. His demeanor is quiet, competent, compassionate and welcoming. Just being in his presence makes a patient feel comfortable.

On this evening, he arrived early, and stayed late.  He answered every question, and after his presentation he visited with several people who wanted to seek his advice about their situation. Watching him out of the corner of my eye, I saw a person who loved his work because he knew he was in a position to help people successfully navigate the dark gravel road called cancer.

He also made time for three student nurses from Wilkes University, and members of the administrative staff at Candy’s Place.

Penny Cunningham, the founder of Candy’s Place, was on hand to greet everyone. Penny is an amazing woman.  She has dedicated virtually every minute of her life to the mission of Candy’s Place.  The premature death of her sister Candy Vincent Mamary in 1998 closed the door to a priceless relationship with her sister, but it opened the door to Candy’s Place for thousands of people who benefit from its programs like yoga, exercise, massage therapy and cancer awareness and treatment information.

With great skill and due diligence, she has assembled a top notch team of professionals and volunteers headed by Nicole Farber. They are the heart and soul of Candy’s Place. They make it what it is by attending to all the little things that matter to patients and caregivers.

At one point in the evening, I saw an image of Dr. Kopen, Penny Cunningham, and Nicole Farber talking with the student nurses and a cancer survivor. As I focused the image for a digital picture, the words of Martina McBride’s song, “I’m Gonna Love You Through It” reverberated in my memory:

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

It’s the perfect description of the people who made this evening so special, and the life- saving blessings of Candy’s Place.

During the evening while I was recording video and digital images, I thought about Kitch’s battle with breast cancer.

Under the watchful eye of Dr. David Greenwald, she successfully completed chemotherapy. It was difficult, demanding and at times debilitating, but she never gave up and she never gave in.  

When she finished her chemotherapy infusions, she took the extra step to guarantee a successful outcome by taking 33 radiation treatments administered by Dr. Norman Schulman and his wonderful staff of technicians.

To facilitate the transition from treatment to the restoration of a full life, Kitch visits Candy’s Place once a week for one-on-one yoga lessons with Theresa Novak. These sessions have been invaluable in her recovery.

Before Kitch and I got into our car for the ride home, I turned to look at the entrance to the building. What I saw in the darkness of the night was a bright moon resting just above Candy’s Place.  Below it, three women were sharing stories about the evening. They were smiling and enjoying the comfort of good information, good company, delicious treats and a sense of belonging that lifted their spirits and gave them hope.

Oliver Wendell Holmes was right, “Where we love is home.”

Thank you, Penny Cunningham.

Thank you, Nicole Farber

Thank You, Dr. Dan Kopen

Thank you, Kitch for giving me the opportunity to love you through it.

You are four faces of America on its best day.

Please provide feedback to:

Tmussari@gmail.com

 

 

 

Battling Cancer: Kitch Reaches a Milestone

Sunday, June 5th, 2011

Aphorisms for a Cancer Patient and Family

Written by Tony Mussari
Copyright 2011
The Face of America Project
Mussari-Loftus Associates, LTD

It’s Over, Hallelujah. Kitch Loftus-Mussari

The Last Day of Chemo

On June 2, Kitch had her final chemotherapy infusion. It was a moment we will never forget. Like all of the previous visits to Medical Oncology Associates, we were apprehensive and fearful.  With chemotherapy you never know what to expect.  There are so many variables both psychological and physiological.  It is never a pleasant experience for the patient, and it is always an unnerving experience for the caregiver.

During the past six months, we have seen the heartbreaking and painful consequences of cancer.  It is not a pretty sight. It is both humbling and transformational.  

The major tool in the arsenal of oncologists fighting this dreaded disease is chemotherapy.   Our friend, Dr. Richard Loomis, described it with these words: “Chemo is an itinerant intruder. It takes over your body and it tries to take charge of your life. It is barbaric and it has consequences.”

On this the last day of chemo, Kitch and I experienced several family moments. A woman named Kathy who we met at a session in May sat next to Kitch. They exchanged stories about their experiences, and they enjoyed one another’s company.

The woman, who occupied the recliner on the other side of Kitch, asked if the television set at her station was too loud.  When we replied yes, she apologized and immediately turned the volume down. “I appreciate your need for peace and quiet,” she said.

Our special friend arrived and we spend some quality time with her answering questions and filling in the blanks as it were.  We agreed to stay in touch by telephone.

One of the receptionists who has always been considerate and kind offered her best wishes in a genuine and thoughtful way.

When we arrived home, we were greeted by a surprise from my cousin, Kathy, and a beautiful bouquet of flowers from a dear friend of many years, Patricia Brown. My daughter sent a package of cosmos seeds with a note of congratulations, and wonderful cards from my niece and godchild, Teresa, lifted our spirits.

For the rest of the day our home was filled with feelings of accomplishment and relief that are hard to describe. Kitch has every right to be proud of herself.  She had a very heavy and aggressive dose of chemotherapy chemicals to rid her body of any rogue cancer cells.  Now she can say with confidence she is onto the next step in her journey to recovery. After an operation to remove her portacath, and some tests, she will begin six weeks of 30 radiation treatments.

Recently someone asked me how Kitch is doing. I answered the question with these words: “She is a profile in courage.”  If truth be told, every cancer patient we met deserves the same description.

There are many things we learned during the past few months which can best be summarized in these 20 aphorisms of a cancer patient and caregiver.

Aphorisms for a Cancer Patient and Family

1. Don’t let cancer define who you are.

2. Connections matter. The energy from family and friends can light the way to recovery.

3. Forget the “if onlys” in your life. They only bring regret.

4. Focus on the “next times” in your life. They bring hope.

5. Accept the fact that you can’t do everything you want to do, and that’s OK.

6. Make time in your day to laugh, talk, complain, and plan. Laughing at yourself and your fate is liberating.

7. Chemotherapy is difficult, disorienting, debilitating, frightening and an inconvenient experience. It has a “use by” date. It doesn’t last forever, thank God!

8. Don’t preach to patients. They won’t listen.

9. Don’t talk about a positive attitude. Model it.

10. Compassion and caring will make all the difference.

11. An unexpected act of kindness is often the best medicine.

12. Caregivers must be available, and do what needs to be done when it needs to be done.

13. Be patient with yourself and the process.

14. Be vigilant, ask questions, get answers and never give up.

15. Little things mean a lot. Do the little things joyfully.

16. Don’t poke the cage. There are days when the patient wants to be alone.

17. Give yourself time to be angry, frustrated, sad and weary, but don’t lament forever.

18. This is a time when everything in moderation takes on new meaning.

19. Losing your hair is distressing, but other side effects are much worse.

20. No matter how bad you have it, someone has it much worse. Gratitude always saves the day.

During our dark moments of disappointment, depression, fear and uncertainty, we were rescued by people who took the time to help, to encourage, to do the unexpected, and to lighten our burden.

Terry Tempest Williams spoke words that say it all: “An individual doesn’t get cancer, a family does.”

To everyone who volunteered to be a part of our family, who understood our need for privacy, who found a way to connect and help us without intruding, we thank you from the bottom of our hearts. You are our heroes, and we will never forget you.

Until the next time, we hope that all of your stories have happy endings.

Tony & Kitch Mussari

Please provide feedback to tmussari@gmail.com

 

 

 


Battling Cancer with Living Prayers

Monday, May 9th, 2011

Living Prayers, Celebrations and Mother’s Day 2011

By Tony Mussari
Copyright 2011
The Face of America Project
Mussari-Loftus Associates, LTD

The worst thing in your life may contain the seed of the best. Joe Kogel

Kitch’s Journey: Pleasant Surprises

On Thursday Kitch had her second 280 mg Taxel treatment, and we had an eye opening experience that will remain in our hearts forever.

To be perfectly honest, Kitch dreads going for chemotherapy. She fears the needles, the chemicals and the consequences of the drugs. Two days before the appointment you can see the dread in her eyes.

Nevertheless, she does not complain, and she musters all the positive energy she has to handle the situation with calm acceptance, courage and dignity.

Several friends old and new, some of our relatives like my daughter, my sister, my niece Theresa from Maryland and my cousin Kathy and her daughter  Susan from New York, help us get ready for the inevitable with encouraging  notes, calls and acts of kindness.

Friends we made in North Plainfield, New Jersey and at Fox Chase in Philadelphia are always there for us with positive words and helpful suggestions.

Two breast cancer survivors who we have never met, Pat and Kathy write thoughtful notes and our friends Janie, Jayne and Chuck from Shanksville, and Bill from Orwigsburg are there for us in meaningful ways.

Our friends Julie from California and Marilyn from Dallas and Tulsa respectfully, and Elisa from Long Island have been nothing short of inspirational in what they have done and continue to  do to lift our spirits.

Our friend Bob from Portland has shared every phase of his wife’s experience  with us so we can be prepared for every eventuality.

Ann Marie, the mother of one of our formers students, has been very kind and  very helpful in all the ways that matter.

Our Neighbor Theresa, has baked delicious German pastry for Kitch, and another  neighbor who is dealing with a life threatening illness brought her daughter  and her grandchildren to the garden on one of the few sunny days of this otherwise  damp, dark, and very wet spring.

Nothing brings hope like the innocence of a child, and these children are wonderful in the questions they ask about the garden, the fish and the frog.

Marlene from Ashley and Gerry from Delaware baked the most delicious Irish  Soda Bread we have ever eaten.

Dr. Richard Loomis, my former teacher and chemotherapy patient, is sharing  his experience and showering Kitch with prayers for recovery.

If you ask kitch to describe these people, she will tell you they are the Face of America on its best day, and we are the beneficiaries of their kindness.

Living Prayers

There is no way we can repay these people and many others whose names we have not mentioned in this newsletter, but there is a way we can follow their example, and that is what we try to do.

Yesterday while Kitch was sleeping during the last phase of her treatment, I talked with one of the cancer patients who has been friendly to us. She is an older woman who is always alone.  Her only  companion is her walker. During our conversation she began to cry. She is suffering mightily, and she is in a very difficult circumstance. She needs additional medical care for the Neuropathy that has swelled her feet and her left arm, but she is reluctant to make additional appointments because her son works at night and he sleeps most of the day.

This is not a woman of wealth or connections. She is a widow living on a social security income who is waging her second battle against breast cancer. The painful and haunting look on her face touched my heart, and I promised her I would do something to help.

During her daily telephone call I mentioned the situation to Ellen Mondlak, our lifetime friend and cancer patient. Ellen connected me with a wonderful woman we met during the production of Windsor Park Stories, Brenda Lispi. Brenda works for the bureau of the aging. The result of these conversations was positive. 

Last evening, I called our fellow traveler on the dark gravel road, and I gave her the telephone numbers of the organizations that will help her find a  solution to her problem. The pain on her face enabled us to do something I learned in grade school at St. Mary’s. “When you can’t say a prayer, live the prayer with a kind deed or a thoughtful gesture.” To be honest, I have found living prayers to be the best prayers.

To everyone who has been kind to Kitch during her walk along the dark gravel road called cancer, this prayer was for you.

Two Wonderful Events

Last Sunday, Our Face of America Journey took me Misericordia University in the morning, Wilkes University at night.

Scholarship recognition day at Misericordia is always a special event, and this year was no exception. In fact, it was extra special for me because the new director of development, Jim Bebla, is a former student of mine.  

Jim is a wonderful person and a consummate professional with a heart of gold. There is nothing more gratifying than watching a former student equal and surpass the teacher.

Congratulations Jim and best wishes for success.

Misericordia will always have a special place in my heart, and I know Kitch feels the very same way. We have only pleasant memories of the Sisters of Mercy and the members of the administration and staff. Dr. Michael MacDowell has been a very effective leader. He and the members of his faculty and staff have created innovative programs like the Women with Children Program that serve the needs of students who want to make a better life for themselves and their  children.

Jane Dessoye, Executive Director of Enrollment Management, summarized the event and the philosophy of a Misericordia education with the words of a confederate soldier Albert Pike:

"What we have done for ourselves dies with us; what we have done for others and the world, remains and is immortal.”

At the end of this visit, I took a picture that speaks to the essence of Misericordia. It reinforced something Jim said in his speech, “This scholarship brunch holds special meaning for all of us because it celebrates the wonderful caring spirit that is at the heart of the mission of the Sisters of Mercy.  And today, in this room, you can feel this joyous spirit that makes Misericordia so special.”  

Our evening at Wilkes University was a celebration of the 30th Anniversary of the Max Rosenn Lecture in Law and Humanities.  It was quite an evening for a very dear friend, Joe Savitz. Joe is affectionately known as the “First Law Clerk,” and everyone went out of their way to affirm and congratulate Joe on the work he has done to make the lecture series a success.

I was fortunate to capture one of the high points of the night for Joe, a reunion with Dr. Mollie Marti. Mollie has written a book about Judge Rosenn.  It is titled Walking with Justice. It will be published in January. This picture captures the moment when Mollie showed Joe a picture of the copy of the book cover. I think the facial expressions speak louder than any words I can write.

Congratulations Joe, you are a wonderful friend.

Congratulations, Mollie. I hope Walking with Justice is a huge success.

Writing Again

Speaking about books, after a two month hiatus while I devoted all of my time to Kitch’s needs, I started to write again this week. At the moment I am preparing material for our agent, and refining some of the chapters in the book about our Face of America Journey.

Writing is a very demanding master.  One must have patience, persistence, time and a quiet place to concentrate. In so many ways, it is an insecure and tedious process that involves writing and rewriting. On the days when the words just won’t come I spend time cleaning up our garden.

Like writing, gardening it is challenging, creative and humbling.

Happy Mother’s Day

Sunday will be the 103d time America celebrates Mother’s Day. Thanks to the determination of Anna Jarvis and her devotion to her mother, this holiday has become the second most successful commercial  holiday in America. That is not what Anna Jarvis intended it to be.

The first Mother’s Day was a day of prayer, and a celebration of peace and the virtues of motherhood.  It took place at the Andrews Methodist Church in Grafton, West Virginia.  Today this church is a central part of the International Mother’s Day Shrine in Grafton.

On Mother’s day, Kitch and I will be thinking about the many sacrifices our mothers made for us.  We will follow Anna Jarvis lead and give thanks for the blessings of our mothers.

We will remember the words of our greatest President:

I remember my mother’s prayers and they have always followed me. They have clung to me all my life.

A mother understands what a child does not say.

I regard no man as poor who has a godly mother.

All I am or hope to be, I owe to my angel; mother. Abraham Lincoln

May your Mother’s Day and every day be blessed with peace, good will and good health.

Tony & Kitch

This article was originally distributed as our Face of America Journey Newsletter for May.  

Please provide feedback to tmussari@gmail.com


Visiting the Fox Chase Cancer Center

Friday, February 11th, 2011

Our Face of America Journey to the Fox Chase Cancer Center in Philadelphia.
Written by Tony Mussari
Copyright 2011
Mussari-Loftus Associates, LTD

Always expect the unexpected. James Patterson

With all due respect to “the man who transformed book publishing,” James Patterson, some things in life are unexpected and unwanted. They come without warning.  They test your strength. They sap your energy, and they turn your life upside down.

That’s exactly what happened to Kitch and me on December 9, 2010, when Kitch was diagnosed with breast cancer.

Since that day, virtually all of our time and energy has been focused on a six letter word that no one wants to hear, and everyone wants to avoid.

According to the National Cancer Institute, breast cancer is the most common form of cancer in women other than skin cancer. In 2010, Kitch was one of the 207,090 women diagnosed with breast cancer.  That’s the bad news.

The American Cancer Society estimates there are 2.5 million breast cancer survivors living in America. That’s the good news.

Our goal is to make sure that Kitch will become a member of that group. We have been blessed with excellent advice and care from Dr. Dan Kopen and his team of nurses and assistants. A recent visit with Dr. David Greenwald and members of his staff reassured us that improved methods of chemotherapy will give Kitch a higher probability of beating this cancer and avoiding the probability that other cancers might develop.

Both Dr. Kopen and Dr. Greenwald encouraged us to seek a second opinion, and we are very thankful they did.

On Wednesday, February 9, we packed our Prius with a folder of CD’s containing all of the data from several medical tests and the glass slides containing the pathology of tissue samples taken during her biopsy and operation, and we drove to the Fox Chase Cancer Center in Philadelphia.

From our first contact with the attendant in the parking garage to our parting farewell to a young woman named Michelle, every experience at Fox Chase was positive, welcoming, comforting, helpful and reassuring.

Cancer patients and their caregivers are filled with anxiety and fear. There are so many unknowns and so many worries. It’s not only the disease itself; it’s the disruption it causes in one’s life, the loss of privacy, the worry about the cost of care and the uncertainty about the future. At Fox Chase, everyone you meet is sensitive to these issues and much more. To them you are not a client. You are a patient who needs help.  You are not being treated by a provider.  You are visiting with and talking to a medical doctor who cares about you and the problems you are facing.

In all things big and small, Fox Chase is an example of patient care at its best. When you enter the facility, you are greeted by a personable and thoughtful attendant who helps you register. The young woman who worked with us was named Michelle. She was flexible and very accommodating. She made registration a pleasant and human experience not an exercise in robotics. When I made a mistake, she was understanding. She did not embarrass or scold me.

When we reached the registration desk adjacent to the waiting room, we were greeted again by a person, not a blaring television set or loud music.  At Fox Chase, there is no television set. In its place there are people who talk with you and help you. When I explained that I was writing an article about our experience, Nurse Navigator, Jessie Schol was more than willing to have her picture taken with Kitch.

Once inside the examining room, Kitch was greeted by a wonderful nurse, Jacqui Kelly, who explained the procedure and then she gave her a surgical robe that was freshly ironed.

Dr. Saad Khan, a fellow in medical oncology, visited with us for almost 45 minutes.  He began our conversation with these words, “Good afternoon, I am Dr. Kahn. Let me see how I can help you.” That set the tone for a very productive conversation about probabilities and possibilities. It helped us to put things into perspective. Dr. Khan has been working in medical oncology for 18 months.  He made a very favorable impression, because he made a human connection with us.

When Dr. Lori Goldstein entered the room, she greeted us with a smile and a handshake that radiated concern, compassion and competence. Dr. Goldstein was invited to become a member of the Fox Chase team 20 years ago. She is a woman of dignity, class and grace.  We did not know that she was recently selected as one of Philadelphia’s top doctors, and she gave us no indication that she was anything but a very competent doctor concerned about Kitch’s welfare.  

Dr. Goldstein spoke a language that we understood, because she has a gift for translating complex medical data into sentences her patients understand. During her conversation with us she made us feel comfortable with news we did not want to hear by reassuring us that the chemotherapy treatment Kitch needs is something she will be able to tolerate both physically and psychologically.

While we were with Dr. Goldstein, both Dr. Kahn and nurse Kelly were in the room. All three were focused on Kitch and her needs, and all three acted with kindness and respect. They were not rushed, they were not imperious. They were generous with their time and willing to answer any and all questions.

Obviously most of the moments were serious, but believe it or not, there were moments of humor and laughter.

For a cancer patient and a caregiver, there are no perfect scenarios, there are no perfect moments, but in my mind’s eye our experience at Fox Chase with Dr. Lori Goldstein and her colleagues was about as close to perfection as one can get.

What made it that way is a very simple, but often neglected element. Fox Chase is dedicated to scientific research in its effort to prevail over cancer, but it has not lost sight of the importance of the human connection. Battling cancer demands an effort of the heart as well as the mind. Everything we experienced during our visit provided the scientific answers to our questions, and the encouragement we needed to move forward. Our Fox Chase experience was a perfect blend of the heart and the mind.

When we arrived at Fox Chase we had great expectations and many apprehensions. When we left we had a better understanding of our situation, and a sense of confidence that we could meet the challenges of the next six months with confidence, hope and optimism.

To put it another way, the psychology and the physiology are now aligned, and we are ready to take the next step in our battle with cancer. We are prepared to experience the unexpected.

Thank you Dr. Lori Goldstein, Dr. Saad Khan, Jacqui Kelly, RN, Jessie Schol, RN, receptionist Pat and Michelle.

Thank you Dr. Dan Kopen, and Dr. David Greenwald.

You are the Face of America on its best day and we are blessed to know you     

Tony & Kitch Mussari
Producers
The Face of America Project
tmussari@gmail.com