Rebecca Libutti
Wife, Mother, Daughter, Friend
Members of The Healing Exchange BRAIN TRUST Board of Directors are deeply
moved, in mind, heart, body and spirit by the passing of our fellow board
member and kindred spirit, Rebecca Libutti, on March 11, 2004. Her
passage is a great loss to our community, her life and her spirit are a
great gift.
Rebecca was a devoted member of our online groups and organization for
many years. She inspired all of us by her dedication to providing support
to other brain tumor patients, and her boundless optimism. Her vision for
better care and services for brain tumor suvivors worldwide was a
fundamental part of her being which she shared with us. Her kindred
spirit and ideals were driving forces in our principles. Her sense of
humor kept us sane. Her book titled "That's Unacceptable" is a foundation
for our drive to assist patients and families affected by brain tumors to
become self advocates and to aspire to live every day to the fullest.
Her physical presence in the brain tumor community will truly be missed,
especially by everyone fortunate enough to meet her. Her passion, tenacity
and great love for others will live on.
Rebecca's passage is Unacceptable. We will not accept it.
We will continue our efforts with her spirit and guidance.
Our thoughts, prayers and sympathy go to Rebecca's husband Warren and their
daughter Krystal. May her memory be a blessing.
May her spirit continue on.
In addition to Rebecca's family and friends and the Central New Jersey
Support Group, We wish continued courage to all of the members of the
BRAINTMR list, Braintrust.org lists and the entire brain tumor community
and friends.
No matter the length, It is the LOVE we share with each other that makes
the journey worthwhile.
It is our great priviledge to have shared love and work with Rebecca Libutti.
Samantha Jane Scolamiero
Matthew Fullerton
Nancy Conn-Levin
George Hunter
David M. Bailey
Board of Directors
The Healing Exchange BRAIN TRUST
In September of 1993, Rebecca, a wife, mother, and career woman had just finished a 20 million dollar proposal, baked cookies for her daughters 2nd grade class, and played three sets of tennis the week before being diagnosed with a malignant grade iv glioblastoma multiforme. Here is her story in her own words:
"I would have given anything in 1993 to have been able to read accounts of other survivors. The first book I read said to search out survivors of what you had been diagnosed with and see what they did. In 1993 there was not the availability of the brain tumor list, no internet accessibility like today, very few local support services, no virtual trial database, and there was virtually very little way to connect with others who had this disease. The American Brain Tumor Association, National Brain Tumor Foundation and The Brain Tumor Society eventually put me in touch with others who had survived. Just knowing that there were survivors gave me hope - one of natures best medicines. For this hope, I am grateful to share my story.
After determining that I had a brain tumor, an emergency stereo-tactic computer-assisted craniotomy was performed by Dr. Brian Beyerl at Overlook Hospital in Summit, NJ. The tumor was located deep within the left parietal lobe of the brain very close to the motor skills. Due to the nature of this tumor and the microscopic cells which are likely to remain even after a sucessful removal, the surgery was followed with 35 treatments of standard beam radiation, specifically aimed directly at the tumor to minimize damage to healthy tissue. This treatment left me tired and bald but bolder and uninhibited about my determination to survive.
After consulting with Dr. Mark Malkin at Memorial Sloan-Kettering in NY City and later with Dr. Fred Hochberg at Mass General in Boston, Massachusetts, I began a round of chemotherapy often called PCV, my treatment consisting of BCNU (or CCNU), Vincristine, and Procarbazine. I elected this treatment although known to be ineffective at the time, because I met a young woman who had taken it when it was a clinical trial and she has survived for nearly twenty years now with no deficits. I had a simple belief - if it can work for her, it can work for me. Today there are more effective treatments for which I am grateful - especially should I need them in the future.
The future ... in 1993 no one held out a future for me. At 38 years old I was told I might survive a year, maybe two. I was completely paralyzed on the right side prior to surgery. The surgery was a great risk due to tumor location. Now in the past 5 years, I have included many non traditional modalities to survival which cannot be measured in milligrams, centimeters, rads, or statistical data. I began piano lessons at age 40 to retrain my right and left brain functions, memorized a gazillion songs to improve my short term memory, I did fun and challenging projects with my daughter, like building a dollhouse, 3D puzzles, taking art lessons, tennis lessons etc. I also undertook a gradual program of herbal alternatives and holistic therapies, do weekly aerobics and walk 2 miles with my dog, and even wrote a book about my survival - entitled Thats Unacceptable - an attitude that has gotten me further than anyone including me would have imagined.
The technical stuff I leave in the capable hands of my doctors, the rest I leave in the hands of God. I have been truly blessed to be treated by high caliber professionals who are willing to offer me hope. That hope is what I am determined to share for as long as I am a survivor and may that be a very very long time..."
Click to go READ ABOUT
Rebecca's Book
"That's Unacceptable"
Surviving a Brain Tumor
Rebecca's Personal Story
The Guest Book below is for you to leave messages for Rebecca's family
Even if you didnt know these wonderful people directly
we already share a connection
Patient, Caregiver, Family Member, Friend.
