My story is that I am 63 years old, mother of three and grandmother of five. I have had multiple opportunities to serve as a caregiver throughout my adult life and each experience has shaped me and have been beautiful, meaningful experiences in their own right. I have also been in the patient role on multiple occasions with significant needs that required me to depend upon caregivers around me for support.
My experiences as a caregiver may sound similar to many of you reading this. My mother died in 1984 after a prolonged illness and I helped provide her care and support. I have two sisters who are younger than I am and am involved in their care as they have developmental delays and require oversight and direction as adults; my husband and I took in my elderly aunt who was childless, developed alzheimers-type dementia and needed extra help. Eventually both my aunt and my uncle qualified for hospice and passed away while living with us or next to us. For six years, my husband and I lived next door to my father and step-mother whom we helped support and provided care as needed. My father passed away in 2019.
My life as patient has been intermittent, but has covered many years and has co-mingled with my professional practice. In 2001, I earned a PhD in Health Psychology/Behavioral Medicine and began working in private practice as a pediatric neuropsychologist.
In 2007, I was diagnosed with Stage IV squamous cell cancer in the base of my tongue. As a healthy, non-smoker who rarely drank alcohol, this came as a total surprise. After radical tongue and throat surgery, six weeks of chemotherapy and 30+ radiation treatments to my head and neck, I eventually regained the ability to swallow, talk, chew, drink and spit. My daughter as well as my husband were my primary caregivers during this challenging period of time. When I was feeling better, and could talk clearly enough to communicate, I returned to private practice. Eventually I moved my practice to a hospital setting. I continued to undergo follow up scans on my neck and tongue and to this day there has been no recurrence, for which I am very grateful.
I continued to be in very good health until early 2018. At that time, a cancerous spot was accidentally found on my lung during another procedure. I underwent a left lobectomy and my husband was tasked with being my primary caretaker. Again being overall very healthy, I recovered in about six weeks and had no difficulty returning to work. My family shared my relief and gratitude that the cancerous spot had been identified and removed. Then, sometime in early 2019, I developed what I thought was bronchitis that would not go away. A visit to urgent care to get what I thought would be a routine round of antibiotics instead sent me to the emergency room where a thoracentesis was performed. After a series of events, it was determined that the cancer had returned and was now Stage IV, meaning that it is terminal and there will be no cure. Of course, this was devastating news. So far, I have been responding well to targeted therapy and am feeling well. However, there is a new normal to adjust to, particularly in regards to having less energy, less lung power and a constant sense of living on borrowed time.
It is hard to put into words the feeling of not knowing exactly what to expect in the days ahead or even how many days to expect. Planning is something that I have always taken for granted. T.S. Eliot once said that to arrive where you are, to get from where you are not, you must go by a way wherein there is no ecstasy. In order to arrive at what you do not know you must go by a way which is the way of ignorance. In order to possess what you do not possess you must go by the way of dispossession. In order to arrive at what you are not you must go through the way in which you are not. (from East Coker III).
Traveling through the way that I do not know, did not choose and finding meaning and purpose in the journey has required continuous soul-searching and transformation. The challenge of suddenly dealing with having a terminal illness along has been compounded by a sense of ambiguous loss over my role and identity as a neuropsychologist and healthy, physically active wife, mother and friend. I have had to cope with sudden change in my role identity from a healthcare provider to a patient, the reality of a foreshortened future and a change in priorities and expectations during the time left that has been granted to me.
I consider each new day to be an undeserved gift and strive to maintain a spirit of gratitude and hope every gifted moment of every day. I am seeking to find a purpose in loving others, loving God and finding meaningful work.
My goal for this site is to inspire and influence other people, including both caregivers and patients, to have hope and an awareness that they're not alone. It also serves as a reminder to myself that I am not alone. My journey may feel lonely, but I am not alone because of so many who are walking a similar path, or have "gone through the way in which I am not" long before cancer ever became my reality.
Follow along with my journey: