Abstract
I’ve had cancer for 42 years. I remember cancer felt quiet, confusing, and chaotic—emotionally distancing my family from one another. I learned that when cancer invades a body, it invades your home, becomes an unwanted member of your family, and never leaves—it has visited me for 5 decades. I have lost count of all the ways doctors have announced, “it’s cancer.” Yet I remember how those words affected me. In my family, 14 women across 3 generations have had pieces and parts if not entire breasts removed. Only 2 of my 11 cousins have made it past 50 without having cancer surgery. Six of us were diagnosed before our 50th birthday.
So as you can see, you don’t have to be diagnosed with cancer to have cancer! It’s been a journey of learning about the health care industry in which we place our hope, often only to be treated like a product. What we say as a patient may not be what a physician hears. As a patient, what we hear may not be what the physician intends. It’s all predicated upon our personal experiences and emotions … here are mine.
1968-1970: My 3-year-old sister complains that she doesn’t feel well. There were no Ronald McDonald houses, no children’s hospitals, or even pediatricians. Everyone went to the family doctor but kids only got leukemia. So having ruled that out and finding no answers, my parents were sent home with the following conclusion, “You had your kids close together (3 in 35 months). Maybe you shouldn’t have reproduced because they are always sick. I think the baby is just looking for attention. Next time she complains smack her bottom.”
Exhausted and against their better judgment, that is, what was done until my sister was seen by a newly graduated physician who diagnosed her with soft tissue sarcoma—an adult cancer in her buttocks. The same buttocks the doctor told them to smack. This is when I became a health care consumer and was inspired to be a caregiver like the physician who visited us at home, supported my parents, and recognized that my parents did pretty good creating all 3 of us. We followed his career and he was always there for us, even after he pronounced her dead at age 5.
1978-1979: My Aunt is told they feel a lump. No such thing as “regular” mammograms or self-breast examinations back then—if a husband or doctor felt a lump, you got it checked. Disagreements were common about how much to “cut off,” with male physicians often arguing against breast removal because that is what makes a woman a woman … right? My aunt proactively sought the best surgeon, and everyone thought that would be enough. It wasn’t. She died at age 42 leaving behind 6 kids aged 6 to 16.
1989: My dad has back surgery after falling off a roof. Instead of regaining function, he struggles to even move. The treating physician said he was “faking it and didn’t want to work anymore.” A second opinion and X-rays land him on a surgeon’s table. He had non-Hodgkin’s of the spine that had imploded and capsulized. Sadly, the first physician was right; daddy never got to work again because he was rendered disabled after 26 operations over 2 years; only to die 28 years later with esophageal cancer.
2001: My husband dies with a brain tumor at 37 years. Besides his life, cancer took our relationship. Not everyone deals well with this diagnosis so our marriage was a casualty of war 13 months later. A piece of me and our 4-year-old son went with him … remember the caregivers!
2009: My other sister is diagnosed with breast cancer! My mind was made up. If I ever heard those 2 words, “the twins” were coming off.
So back to 1968, while my baby sister was ill, my hands and feet begin to peel down to bone and muscle. The solution is a new drug called cortisone that had no known side effects. From age 5 to 13, I received weekly shots. When reports suggested negative side effects, the shots were cut back to every 6 weeks. At 21, I was taken off cortisone cold turkey.
Only 3 physicians have cautioned me to watch for the “unknown side effects,” which I found out for me was skin that won’t heal, a flight and fight button that is always pushed in and my weight! For a long time, I never found a doctor who congratulated me for managing my weight but they sure did belittle me for not “having the will power to reduce it.” I was sent for a bariatric consult and I was told; “well, gain 100 pounds and then maybe we could help you with surgery!” The physician thought I wanted a quick fix. What I wanted was validation. What I felt was, “wow, even a bariatric doctor doesn’t understand my frustration.” I just wasn’t fitting into their cookie cutter diagnoses.
2003: I need (female) surgery. During the consent process, I nervously joked to the surgeon; “I doubt that I will be having any more kids since I wasn’t actually dating anyone (it was three years after my husband’s death).” The surgeon seemed to miss the irony in my statement and went to my parents to update them and said, “I did a lot of work and decided since she is 40, her husband is dead and she has already had a child, I tied her tubes.” Suffice it to say, they were appalled! At follow-up, I told my surgeon that hormonally I felt disjointed (cortisone can do that to you too) I was promptly referred to therapy! Thank goodness there weren’t scored surveys then, they would not have been high.
2012: On December 27th, I get the call. “It’s cancer!” I kept the promise I made in 2009, and my 2 female physicians were on board saying; “I would probably do the same thing if it was me.” The surgery consult was another matter. After the “are you sure” question, I heard; “You know with your weight, this surgery is too risky,” not, “Sorry to hear you have cancer.” I wanted to scream. A second option was sought. The empathic replacement said that due to the cortisone damage, my skin was “fat, fit, and fragile.” Finally, my mirror and I were validated, because that’s what I felt! It was decided to do the Deep Inferior Epigastric Perforator (DIEP) flap breast reconstruction procedure, where your stomach was taken and transplanted into your breast to save my life and my skin. For once my fat helped!
Today: I’m grateful to these events for making me more mindful. Knowing what I’ve been through, I’m often asked how I manage to smile and joke. The answer is simple. This story has a lot of life in it. My life! So when I clock in, I try to remember that someone in the hospital isn’t going home with the baby they just delivered, another just held the hand of a loved one for the last time, and yet another is hearing, “it’s cancer.” My life is not a product or a diagnosis. My life is a patient experience! My life makes me a caregiver.