Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Steve Kandel
My mother, Sari, lost her breast to cancer in 1959. I’m sure it was caused by a BRCA1 mutation, because cancer ran in her family. Her own mother died from pancreatic cancer at age 49. Mom also lost two aunts (one to ovarian cancer) and two uncles to cancer. All were Ashkenazi Jews. Mom died at age 49—the same age as her mother. This brave, lovely, and vivacious lady was gone from my life. I was 19 years old.
In 2004, I was waiting for my daughter Sari, 36, (named for the grandmother she never met) and her husband Warren to join me in Athens when my cell phone rang. “Daddy,” she said. I hear the strain in her voice. “I have breast cancer.” I remember feeling chilled and faint. This cannot be, I thought. This is not possible. Sari was diagnosed with a nasty invasive cancer and DCIS. Three days later, I was in the hospital when she underwent a quadrantectomy. Later, we learned that we both carry a BRCA1 gene mutation. For Sari, that meant more surgery after four months of aggressive chemotherapy: this time, bilateral prophylactic mastectomies. I wrote this poem for Sari early the next morning.
I awake at 3:00 with a start
with an ache in my heart
maybe this heaviness will go if I write
organize my thoughts...nothing trite
I still see you in my mind’s eye
sitting beautifully erect as you try
to keep your bearings before they start
you know we will, soon, be apart
absent your eyebrows, lashes and hair
your radiance and bravery so striking I stare
you return my direct gaze
perhaps not knowing my thoughts thru the haze?
but then I see a twinkle in your eyes,
yes, Daddy, I know you love me, and I you, no surprise
the nurse questioning you
when will she be through?
but she turns to me and says “I will take good care of your daughter”
and I know in my heart she will
the hours anxiously waiting and getting the good news
then magically seeing you in recovery
when they adjust your bed I see the shock as your breath is taken away
a pain so intense, even with morphine, you cannot speak…nothing to say
except a gasp, the panic I see in your eyes
my heart breaks a little thenI know it will pass
but seeing my child, suffering so, disturbs me to my core
no parent wants to see a daughter go through this
but it is a necessary, life-saving journey
you have intelligently embraced
and as I ask you if I can kiss your fuzzy head
you blink yes and as I gently nuzzle and caress you
I tell you I love you
and you say I love you too
our love resonates and strengthens us
we are all with you later, Warren sobbing in my arms
kissing the top of his head
telling me how much he loves you it rings true
how lovely your vacation was
precious time alone
my dear Sari, stay positive, please
a little better day by day
sure, some bumps, along the way
but someday walking again with Warren on a lovely beach
love, warmth and happiness within your reach
FORCE member Steve Kandel has a BRCA1 mutation, inherited from his mother and passed on to his daughter. He is actively involved in fundraising for Sidney Kimmel Cancer Center in San Diego and Mary-Claire King Breast Cancer Research Lab at the University of Washington.
by Paul Jacobsen, PhD
Steve’s poem vividly captures the intense feelings parents experience when, regardless of the child’s age, a son or daughter is seriously ill. The bonds between parent and child are powerful and reflect many beliefs about our responsibilities toward our children. Two of the most fundamental beliefs are that, as parents, we should be able to protect them from being hurt and, if hurt, we should be able to help heal them. The diagnosis of cancer in a child can seriously challenge both of those beliefs.
While working in the Pediatrics Department at Memorial Sloan-Kettering a number of years ago, I witnessed firsthand the anguish and helplessness parents feel when their child is ill with cancer. Although it was mostly mothers I saw accompanying their children during hospital stays and outpatient visits, I sensed that the fathers too were profoundly affected. Indeed, a number of fathers I talked with shared many of the same thoughts and feelings that Steve expresses in his poem about his adult daughter.
There is, however, an important element of Steve’s experience not shared by most other parents of sick children. I am referring specifically to his family’s multigenerational experience with cancer and his knowledge that he and his daughter share a BRCA1 gene mutation. In most families, the occurrence of a serious disease like cancer is an isolated event, and the likelihood that the same disease will affect other family members within or across a generation is remote. Unfortunately, this is not the case in Steve’s family or in other families with BRCA1/2 mutations. Parents in these families are likely to have already experienced the challenges of a cancer diagnosis, and quite possibly a death from cancer, in a close family member. Such experiences serve to heighten the fears and concerns of these parents when their child is diagnosed with the same or a related form cancer.
There is another aspect to the experience for some parents in families that share BRCA1/2 mutations. I am referring to a sense of guilt that they may have “passed on” cancer to their children. Although not expressed in Steve’s poem, this guilt can have a corrosive effect on a parent’s feelings about themselves and on their ability to be helpful to their children. In many instances, parents who feel guilty can benefit from contact with a mental health professional who can provide them with a safe emotional environment to explore and resolve these feelings.
Dr. Paul Jacobsen is the director of the clinical program in Psychosocial and Palliative Care and the research program in Health Outcomes and Behavior at the H. Lee Moffitt Cancer Center and Research Institute. Dr. Jacobsen’s work focuses on identifying and promoting behaviors that can lead to reductions in cancer risk, earlier detection of cancer, and improved quality of life following cancer diagnosis.
Do you have something to say that may inform our readers or ease their experience? We invite you to share your reflections or personal story about dealing with the issues of hereditary breast or ovarian cancer. Tell us how you feel, how you cope, or what you’ve learned. Email stories of 500-550 words to:
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16057 Tampa Palms Blvd.W. #373
Tampa, FL 33647
Please include your name and daytime telephone number so we can contact you if we decide to publish your story in a future issue.