Abstract
Early in January 2019, I turned 65 years old and have been living with breast cancer for three years. I first found the barely palpable lump on self-examination of my right breast in January 2016. The lump was not tender and I had no signs or symptoms of illness. Confident in my faith, mindful of the promises I had made to myself years ago, and following my twin sister's example to die with self-determination and dignity I chose to not have any diagnostic assessments done for possible breast cancer or the curative treatments often proposed for treatment. I chose to live my life fully. This is my personal reflection on my journey with cancer and end-of-life care, both as a health care provider and patient. My hope is that sharing my journey will provide others the support and confidence to seek their own unique path as a person living with cancer.
In 1999, my twin sister Jane died with lung cancer at the age of 45. She died peacefully, in the privacy and dignity of her own home. More afraid of chemotherapy than death, Jane decided against treatments—in complete opposition to the recommendations of both her pulmonologist and a consulting oncologist. Instead of spending the last month of her life in and out of the clinic and/or hospital, she chose to finish training her miniature horse to pull the cart for her granddaughter—aided by the oxygen provided by hospice. Hospice also effectively managed her nausea, which allowed her to e-mail her family and friends goodbye. She received many cards, e-mails, and letters, thanking her for all the love she had brought to their lives and how much she would be missed. It occurred to me that “Cancer can be a relatively comfortable and easy way to die, if one chooses comfort instead of cure.”
I became a hospice nurse in 2002 and cared mostly for cancer patients during the last weeks and months of their lives. I could not understand why some people with cancer (like my sister) had a beautiful peaceful death, whereas others suffered so much. I told myself, “If I ever get cancer…I won't treat it.” Later, I amended that promise to myself to include “…Nor will I have any invasive tests done that might cause the cancer to spread more quickly!”
In 2004, I founded Hospice Care of America, Inc. in Rockford, IL, with the financial backing of my family and in Aunt Jane's memory. Jane had taught me how to live with a terminal illness and how to die with dignity and autonomy. That is why our motto at Hospice Care of America has always been “Hospice…It's about living!” It has been a tremendous honor to work with such a dedicated group of providers who have prioritized a patient-centered approach to end-of-life care through a comprehensive integrated interdisciplinary care team. I am so proud that we have provided our patients a focus on quality-of-life, treating each of them as a person, not a disease.
In January 2016, when I discovered the lump in my breast, I had already decided—long before the decision had to be made—I would not seek tests or treatments that could make me sick and erode my function and quality of life. I had decided that it is more important how one lives, than when one dies. My life had been normal these three years, except for an ever-enlarging lump in my breast and mild to moderate discomfort. During that time, instead of my life and that of my husband revolving around tests, treatments and their side effects, emergency rooms, hospitals and clinics, we have focused our lives around those things that truly matter. In the calendar year 2017, my older sister and I organized a once-ever family reunion at a Rocky Mountains YMCA camp. My husband and I served on two deployments with Christ in Action, doing physically demanding disaster-relief work in Texas after Hurricane Harvey. We were able to be in the Christian mission field in Nigeria. In 2018, I spent precious times traveling all over the country visiting my much-loved family members and friends. I have lived fully these past three years!
As my cancer has progressed, I have received excellent palliative medical care. My mild/moderate pain has been well managed. The tumor continued to grow, with it eroding through the skin in November 2018. Owing to health insurance issues, I waited to have palliative surgery until January 2019. When removed, the 8 × 6.5 × 5.5 cm tumor was a grade 3 stage 4 invasive carcinoma—a poorly differentiated tumor with a poor prognosis.
I am now receiving back from hospice much more than I ever gave! I became a patient of Hospice Care of America soon after my palliative surgery. Being a hospice nurse helped me be a different sort of cancer patient! I had no chemotherapy, radiation, or invasive tests. I have lived a full life with cancer for three years, with very little discomfort and no regrets.
Looking back at my life, especially this last chapter—I am so very grateful to God for having spared me any real suffering. In a recent text message to my Colorado friend Kaye Johnson, I wrote, “I'm doing well, Kaye. I feel so blessed. I am amazed at how good my life is…with cancer! We all have limits. I thank God every day for his goodness and such a rewarding and fulfilling life. I get to go home—to heaven—sooner than many. I have gotten more time here than I expected. Why have I had so much, while others suffer so much? I guess life's not fair.” My life-friend, colleague in hospice and palliative care, frequent collaborator, and former chief medical officer for Hospice Care of America, Daniel Swagerty, MD, MPH, said to me recently, “Marty, I'm not at all surprised how this has unfolded. It is how you have lived your life. I wouldn't expect you to die any other way.”
A special thanks to Dr. Dan Swagerty for his invaluable assistance and encouragement in editing and sharing my story.