Stage4Lifer: Artifacts of Generational Caregiving and Metastatic Cancer
For #Stage4Lifer, Hear My Voice Volunteer Felicia Johnson blogs about her family history with cancer, and going from caregiver to the one needing care after a metastatic diagnosis.
The initial shock of being diagnosed with metastatic breast cancer closed down my mind. I heard the words my surgeon said, “You have metastatic breast cancer”. It was as if I placed my hand on a hot pot without wearing an oven mitt. I left my doctor’s office trying to assimilate the information she had given me. I digress just for one moment to paint a picture. I understood the word “cancer”.
You see, I have lived within the boundaries of three generations of cancer. I did not experience childhood like most girls. There was no excitement about playing with dolls. There were no pajama parties. I did not dream of my first date and kiss. Why? At the age of 14, I experienced my first role as a caregiver. My sister was diagnosed with brain cancer at nine years old in 1974. I was responsible for visiting her along with my parents to play and comfort her as best I knew how. Unfortunately, she succumbed to the disease.
At that point, my cancer-related skill box was open for training. The cancer continued to grow and affect the women in my family like an uncontrollable weed. There have been a total of eleven women diagnosed with breast cancer in my family. It was vicious, mean and came in the form of metastatic breast cancer. At the age of 15, I was sitting in the hospital waiting for my mother to come out of breast surgery. Before I knew it, I was attending cancer-related doctor’s appointments for my aunts, sisters and cousins who had been diagnosed with breast cancer. As the years passed by, I learned how to listen, take notes and ask important questions.
What I did not realize was the depth of what it meant to be a caregiver. It was not like today. There are services that support families taking care of terminally ill loved ones. I had on the job training. It started with a diagnosis. Next, I moved to family and psychosocial concerns, surgeries, palliative care, and hospice. Was all that training to be wasted? No, you see, I was diagnosed with metastatic breast cancer in 2003.
As a mentioned earlier, I understood the word “cancer”. It was the descriptive adjective “Metastatic” attached to cancer that tossed me into moving traffic. That word silenced my mind like the darkness of a midnight moon. I did not know what to say to my doctor. I was pushed suddenly and uncontrollably on to a cancer conveyer belt. It took control of my life. However, there was also new a challenge; I was the patient. My family and friends were now taking care of me.
My body started to melt down with every imaginable side effect. I was the one whose biological machine revolted against the toxicity of chemo. I was the one going through the harshness of side effects. I was the one who could not walk more than three steps without needing to rest. . I was the one faced with the meaning of cancer and excruciating pain. My list could go on for ten pages, but I will stop here. Yes, I was dragged inside the cocoon of metastatic breast cancer. But I had a secret weapon. The outer shell of my silk cocoon was woven with my family and faith. My family had the care giving experience and faith to help bring me through. In closing, I continue to utilize all the caregiving skills I gained from my generational teachers. And when I think about the word N.E.D. I say the following:
N: Navigating my way through each day because it is a blessing.
E: Even though I don’t have a diamond ring, my life is priceless. I am going to share it with my family, friends and others.
D: Don’t know about tomorrow. But, I can sing about today. I have danced in the cancer caregiving ring for more than thirty years. No matter what the outcome, faith is my main dance partner. And that’s my artifact of generational care giving.
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Felicia Johnson has been living with metastatic breast cancer since 2003. The complexity of cancer has taught her to take a holistic approach to fighting it through education, medical science, faith and nutrition. Breast cancer has led her to become proactive in sharing about breast health. She serves as a breast cancer leader at a faith-based organization. She is also a cancer buddy at a major healthcare facility in Philadelphia. She enjoys learning about breast cancer research and new treatments options. In her free time, she likes writing and spending time with her family. She believes, “My purpose is to help others with their breast cancer battle.”