My dream was for a center where all cancer patients and their family members can get better prepared to deal with the enormous challenges of this disease, regardless of their ability to pay.
In 1993 I found myself dealing with a metastatic recurrence of the breast cancer I had been treating for four years. As I sought out second opinions, I was told that my only chance of survival was to have several surgeries, high dose chemotherapy, a stem cell transplant, and radiation.
Even though I had been practicing psychology for over 15 years, in both mental health and medical settings, I was unprepared to deal with my anger and disappointment, and unable to help my family with their distress and fears. To my surprise, my colleagues were no better prepared to help.
My experience with cancer was colored by its continued presence in my life. Watching a close colleague, my father and cousin, as well as the children I was treating during my postdoctoral training at Children’s Hospital of Orange County on the oncology unit, deal with the grueling side effects of chemotherapy to no avail. And now I had this medical mistake which led to this recurrence, leaving me even more skeptical of the medical community and convinced that I could never trust enough to walk into the world of chemotherapy.
For context, this was the 1990’s, a time when cancer wasn’t talked about because it was mostly seen as a death sentence. Survivorship had not yet bloomed, accepting cancer as a chronic illness didn’t exist, and genetic testing and the breast MRI were just being studied and introduced. To my advantage, it was a baseline breast MRI that discovered the tumors growing in my breast.
My new surgeon spent hours arguing with me, pushing me to do whatever it took to survive this disease. This wonderful surgeon was very clear that if I did not have high dose chemotherapy with a stem cell replacement I would be dead in five years and she just wasn’t having that. She had lost too many patients, and with high dose chemotherapy there was a chance to turn the tide. This force of nature surgeon convinced me, after bringing my husband and daughters into the discussion, to have a visit with Dr. Neil Barth, the oncologist who could provide this treatment.
As a family, we fell in love with him. He was respectful, warm, compassionate and confident that if I gave him a year of my life he’d give me back ten. The caveat was that no one was sure just if and when the high dose chemotherapy would end up resulting in a case of leukemia, but the 10-12 year mark seemed their best guess. I left that meeting unsure of what I was going to do.
At the time of the recurrence I had been training for the Long Beach and LA Marathons, but due to my surgeries I had to quit after training up to 22 miles of the 26 mile run. Although I could no longer run, I wanted to be at the finish line to congratulate my running partner. As I stood at the finish line with hundreds of other cheering fans, there was a woman standing nearby waiting and crying. I went over and told her I was waiting for my sister-in-law and asked who she was waiting for. She proceeded to tell me that she was waiting for her husband who had spent the last two years dreaming of finishing this race and thanks to his wonderful doctor, Neil Barth in Newport Beach and his stem cell transplant, her husband was here fulfilling his dream. I went home and agreed to do the treatments.
During the first two months of treatment I managed to go to work, in my wig, with my chemotherapy pack active and running on my belt, as I started the process of transferring my private patients to colleagues. Agreeing to the treatments and accepting how life was changing were two very different realities. I remember sitting in my office, after a session with a patient, thinking I was out of my mind, that I had finally lost it. It wasn’t easy acknowledging the limitations of the harsh chemotherapy treatment which left me with no choice but to close my practice.
Everyone kept telling me to be strong and I would be fine. I kept saying you don’t know that—just read the research and the statistics. There was no one I could talk with about the enormous amount of fear, pain and discomfort that accompanied me all along this journey. Looking back, I see that it was even more isolating for my children and family. Everyone trying to be stoic, while suffering silently.
Prior to entering treatments, Dr. Barth introduced me to a wonderful nurse who had endured a treatment more grueling than mine. She became my friend, my link to surviving, my lifeline. She helped me through the long weekends of chemotherapy pumping though my system from a backpack that I took home, as well as her daily visits when I was hospitalized for the transplant. I would look at her and listen as she encouraged me to just hang on. She would say, It will be over soon and you will feel better, just look at me. I held onto her truth focusing on the day when my body and life would return to normal. The reality of her words, her recovery and encouragement is what enabled me to ride the wave of another harsh, grueling day of treatments, pain and discomfort.
Fortunately, the hospital stay didn’t kill the sense of humor and defiant attitude that I had so proudly inherited from my grandmother, making it easy to become friends with the night time nurses. Since sleep was evasive, and the unit was pretty quiet, my slightly off color reading materials had them laughing and stopping by my room throughout the night to hear more. These nurses were marvelous and made this very sick and uncomfortable patient smile.
It was after the finale of six weeks of radiation treatment that I began to recover, heal and process the reality of what I had just lived through. On reflection, I couldn’t believe that I had spent 21 consecutive days in the hospital and not one person, other than my oncologist walked into my room and said, Let’s talk about what you are going through. And by the way, how are your children, husband and mother doing?
As I returned to work and started treating more cancer patients, their partners and families, it became evident that active treatment is not the end of this story, it is the beginning of the next phase. Where it is common to experience some level of trauma accompanied by fear, grief, sadness, anxiety and the uncertainty of the future; past traumas, losses and regrets can resurface on the tail of this fresh trauma. Learning how to manage the emotional, psychological, physical and life altering changes from the treatments was the challenge. Years of follow up scans and doctor appointments, new medical issues that arise, and for some, maintenance drugs or failed treatment protocols, require new resiliency and coping skills.
This life altering experience culminates into what we now call Survivorship (living after treatments or with continued treatments). It offers us the opportunity to reflect on our life choices and decisions, change the things we are unhappy with, or learn to appreciate and be content/satisfied with how things are. Relationships with ourselves and everyone else can take on a new view requiring openness, new conversations, reframes and adjustments. For those who have terminal cancer, a similar process happens, however as you can imagine, it is more pressing and urgent.
As I started discussing these challenges with colleagues (in addition to having an increasing patient load of cancer patients who could not afford to pay for services and who I could not turn away), c
My dream came to fruition in 2000. With the help and support of an all volunteer Board of Directors, friends, family and loyal donors, the nonprofit Fran's Place-Center for Cancer Counseling continues to thrive in 2022. Our model and mission is to ensure that any cancer patient/family who seeks out help has access to a licensed professional who can provide individual, couples, family and grief therapies, in English and Spanish, at No Charge.
Frances Baumgarten, PhD
President & Co-founder Fran’s Place-Center for Cancer Counseling
Author: Losing Mom: a family’s journey of transition, hope & perseverance
Author: Resiliency in Childhood Cancer Survivors: A Clinician’s Perspective
Cancer has changed my life because I can help other people now by listening to them and what they’re going through, because I’ve been there myself.
There have been setbacks along the way, and by no means has it been easy, but I wake up thankful every day. Grateful for my life and those around me who continue to support me.