Have you ever thought about how it would feel to have your life suddenly turned upside down? Everything is going along as planned – maybe not perfect, but fairly “normal” – when suddenly your world crashes around you as your doctor tells you your child has cancer. Parenting a child with cancer is not an easy thing to talk or write about, but Lou Greenzweig generously allows us a peek into his world of parenting his son Matthew, at the time a young adult, through his cancer diagnosis and treatment. Through Lou’s detailed account of a year in his life as a caregiver, we can hear the love and dedication he felt for his son come through loud and clear. Thank you, Lou, for sharing a few of the things you learned along the way with us.
Our Caregiver Section Editor, Pat Taylor, met Lou Greenzweig at the OMG Cancer Summit in Las Vegas earlier this year. Pat was delighted when Lou agreed to write about his experiences with his son, Matthew Zachary, founder of Stupid Cancer.org, for the CKN Caregiver Section. ~Karen Irwin
by Louis Greenzweig
A little about me
I am Lou Greenzweig, born, raised, educated and worked in New York City my entire life. I have lived on Staten Island for the last 38 years. On the day we learned of our son Matthew’s illness over 17 years ago, I was 49 years old, married, had a younger son, Benjamin (17 years old). I was the Assistant Principal of Career and Technical Education at the largest Comprehensive High School in New York City (Tottenville High School – 4200 students). Our family, like other families, had been through the normal illnesses, aging grandparents, the passing of grandparents, broken bones, etc. We certainly were not prepared for the new journey we were about to embark on.
Why I am writing this
My son, Matthew, was diagnosed with a brain tumor (medullo blastoma) in his cerebellum at the age of 21 while he was a senior at Binghamton University in New York State.
A brief, or not so brief, account of our early cancer journey
November 1995 – Matthew finally tells his parents of some handwriting difficulties. He is a computer, music, theatre major who plays piano for the Theatre Department 20 hours a week and is constantly using a computer. I thought it might be carpal tunnel syndrome and made an appointment with an orthopedist.
December 1995 – Matthew called me and said he was slurring his speech. I knew at that very moment he had a brain tumor! I switched his doctor’s appointment from an orthopedist to a neurologist.
December 29, 1995 – We met with the neurologist who read us the report and indicated that Matthew had a mass in his cerebellum. He suggested we see a neurosurgeon. He gave us the names of several neurosurgeons who worked at the top hospitals in New York City: NYU, Columbia, Sloan Kettering as well as a neurosurgeon that was just appointed to Staten Island University Hospital as the Director of Neurosurgery after working at Memorial Sloan Kettering for ten years. The neurologist called the neurosurgeon at Staten Island University Hospital and he was able to see us later that evening. He reviewed the MRI scan and report. He said the tumor must be removed soon. How fortunate (lucky) were we that a neurosurgeon would see us the same day of diagnosis on New Year’s Eve weekend! At home later that evening I called upon every resource I knew for information about neurosurgeons, second opinions, etc. I spent the better part of that evening researching the internet.
January 3, 1996 – Matthew and our family came to the decision to use the neurosurgeon at Staten Island University Hospital for Matthew’s surgery. Surgery was scheduled for Tuesday January 9th. Pre-surgical tests were completed over the next few days. The family was in extreme stress mode. Large vodka cocktails were certainly in order.
Our family was in uncharted waters and we stuck together like glue. Each member was able to support our new destiny as best as possible. My younger son, Benjamin, was extremely supportive and offered to do many of the chores to keep our family in good straits. We never stopped for a moment in keeping our focus on Matthew. The impending weather situation was certainly going to put a stiff crease in our knickers. My son, Benjamin, and his girlfriend, assured us they would shovel all the snow and assist as necessary. On the other hand, I saw weariness in my wife and a deflation in her personality. We would deal with this after surgery.
It started snowing on Sunday, January 7th and did not stop until Monday evening, January 8th. The snowstorm of the century had struck the New York City area dumping 29.5 inches of the white stuff. The neurosurgeon called our home to postpone the procedure until Wednesday, January 10th. My wife’s stepfather had a strangulated hernia and needed emergency medical care on Monday January 8th. I drove him to Staten Island University Hospital in my truck (ambulances were not able to get through the snow). How paradoxical was it that Matthew would be admitted for surgery on January 10th and his step grandfather would be at the same hospital recovering from hernia surgery.
January 10, 1996 – Matt was admitted at 10am and several of our friends met us in the surgical waiting room. The support for our family was incredible. Eight hours and twenty minutes later the neurosurgeon told us that the surgery was successful. Matt would spend three days in Neuro ICU. Visitations were short. Seven days later on January 17th Matt was released from the hospital.
January 17, 1996 – We came home and Matthew recuperated quickly. I took notice that since Matthew’s diagnosis my wife had lost ten pounds, I’d gained five and my younger son, Benjamin, had been a great source of strength and encouragement.
January 29, 1996 – We met with Matthew’s oncologist and he reviewed every post treatment option, side effects, etc. The radiation oncologist recommended banking sperm, visiting a dentist, etc. My wife had lost twenty pounds and finally agreed to see a doctor. She took a leave of absence from work and began a therapy of anti-anxiety medication.
February 2, 1996 – We met with the oncology team at Memorial Sloan Kettering. Matthew elected radiation treatment only. The radiation oncologists discussed the procedures, and the short and long term side effects. A radiation simulation was performed and the oncologists spoke coldly about the success and failure rates of this treatment.
February 12, 1996 – Driving Matthew to Memorial Sloan Kettering for the final simulation a cab driver rear ends my truck on the FDR highway. We were OK but the cab was wrecked and his passenger broke his arm! Truth can be stranger than fiction!
February 13, 1996 – Matthew had his first of 33 radiation treatments.
March 29, 1996 – Matthew had his last radiation treatment.
Matthew took six months to recover from the radiation treatment. The short and long term effects have become a reality in his life. As recently as last year he suffered a mild stroke due to compromised blood vessels in his brain. Radiation is the gift that keeps on giving.
Matthew married Jessica Feldman on November 12, 2005. They were able, through modern science, to have Jessica give birth to twins, Koby and Hannah. My wife and I are truly blessed to have twin grandchildren that we are able to watch every week. We are certainly concerned that Matthew’s medical history could have bearing on our grandchildren. My wife and I are very concerned about Matthew’s health as we are with my other son, Benjamin, and his family. That is why we are grandparents!
My thoughts, suggestions and help
I was able to document all the information in this written report. I was fortunate to have an Apple Powerbook computer during this most difficult time. I typed every piece of information, doctor’s suggestion and medical report. The journal I kept of Matthew’s tumor for the first year is 17 pages in length. It is from this training in documenting information that I was able to be very accurate in the procedures and treatment of my son.
Several of the concerns that were brought to my attention from my experience are:
- Maintaining accurate medical records and doctor conversations
- Facilitating the life of the patient and caregiver without overstepping bounds. I needed to go to the gym a few times a week to work off the stress that I was experiencing. Just Do It!
- Maintaining some semblance of your life before becoming a caregiver. I was able to maintain my work position, albeit on a difficult schedule and time frame. This enabled me to be productive at my job and gave me encouragement to perform on all levels.
- Learning how to pick and choose your battles. There are some medical options and doctor situations that are out of your control. Let them be. Work with the decisions and situations that you have some control over. Nothing is 100%
- Researching resources for appropriate care. I was on the internet since its infancy. It was somewhat helpful in the early days of Matthew’s diagnosis. It was not sophisticated enough at the time to give me real direction and medical information. Today is a different story. Matthew’s organization, stupidcancer.org, can certainly be helpful to all young adult cancer survivors. The Stupid Cancer website is an incredible resource which is helpful to all young adult survivors. I only wish a resource like that was available in 1995.
Louis D. Greenzweig was born and raised in New York City. After retiring in 2002 from a 30+ year career with the NYC Board of Education, Lou now enjoys golfing and spending time with his children and grandchildren.
Lou’s son, Matthew is an award-winning recording artist and performer, as well as an accredited thought-leader in public health, an authority on youth culture and a highly credentialed public speaker. A founding member of the Google Health Advisory Council, in 2007 he launched the I’m Too Young For This! Cancer Foundation, which has since become the nation’s largest support community for young adults affected by cancer. The foundation was ranked a TIME Magazine Best 50 website and FOX News Top 10 Healthcare Blog and supports a global following of hundreds of thousands of friends, fans, readers, listeners and members. Matthew has helped to bring the cause of ‘cancer under 40’ to the national spotlight and has rallied a new crop of activists to give a much needed voice to this forgotten population. Matthew has helped to measurably reverse 30 years of disparity and create social lasting change in how the public relates to cancer for the next generation.