I Am So Grateful: Unexpected Survival

Dorothy Devine, 70, lives in Peace Dale, Rhode Island. She was diagnosed with stage III inflammatory breast cancer in 2004 and metastatic breast cancer in 2014. Dorothy is a 2017 Hear My Voice Outreach Volunteer. She grew up going to a Unitarian Universalist church, but had not attended for half a lifetime: 35 years. In 2014, with metastatic disease that had spread extensively throughout her skeleton, she returned to the congregation. This is the first half of a sermon she gave on July 7, 2017, to an audience of about 60. It has been edited for clarity and to add detail.

I am happy to see friends, family, people who have driven me to treatments, survivors, caregivers, college classmates, LIVESTRONG coaches and participants, helpers I have met here, and some people I have never seen before. I am so grateful.

Two years ago, I gave my first sermon. I explained that a cancer recurrence after 10 years had brought me back to the congregation. I needed community and people to know what my life was about. I shared ideas about why I thought I had been alive, and lots of appreciation for returning to Unitarian-Universalism, to which my mother had introduced me when I was a preteen.

Today I am going to discuss more fully my cancer: metastatic breast cancer. When I learned that my breast cancer had returned and that my skeleton had extensive lesions, I believed I would soon begin crumbling, becoming wheelchair-bound and extremely disabled. Obviously, that has not been the case. I am benefitting from a new therapy I began in my second year of treatment. I have been on it for 16 months. It has kept my cancer from growing or advancing for almost a year. I am so grateful.

Several cancers have recently-released treatments that have made them more or less chronic diseases. As someone with the most common type of breast cancer, hormone receptor-positive and HER2-negative, I have benefitted from a CDK 4/6 inhibitor, a course of 21 pills a month that I added to the monthly injections of strong estrogen blockers and bone strengtheners I had in the first year. Put most simply, the pills confuse the enzyme that signals cancer to grow. I am so grateful.

Side effects in my case have been mild, although others can be so sickened they are unable to continue. For some, it fails to work sooner or later, and cancer keeps growing. Some days I feel every cell in my body is spinning like a gyroscope, and I must stay in my favorite corner of the couch by the window. I find I need time doing absolutely nothing. I have very little appetite, and eat food as medicine, prescribing myself small healthy meals so I won’t forget to eat. After my injections, I sleep for many hours. My immunity is dangerously low and I fight to achieve the correct blood counts every month and stay well enough to be able to start the CDK 4/6 inhibitor again. I live from scan to scan, with four bone scans and four CT-scans a year to determine stability or failure. The period approaching each series of scans is a time of deep concern.

I also become anxious if too much is happening. I can no longer multitask. I had two part-time retirement jobs that I had to quit, one as a LIVESTRONG cancer exercise coach and one as a nursing home receptionist. I miss the earnings, the social connections, and the structure for helping others that work gave me. I loved to read but have not finished a book since my diagnosis. I asked myself, could there be opportunities in my new awareness of life and death? It could be very positive to put my affairs in order, to not leave confusion behind for my loved ones. When my energy was good, could I make my way through necessary tasks? Could I still be the Dorothy I was proud of, who tried to be a positive influence in the world? If I was authentic about my challenge, could it help someone else?

This spring, I became an advocate for metastatic breast cancer awareness, traveling to Philadelphia for training and a conference hosted by Living Beyond Breast Cancer. There were more than 300 attendees: women (and a few men) diagnosed with stage IV, advanced cancer. After being one of only two people I knew living with MBC and feeling very isolated, the crowd – laughing, talking, hugging, learning together – was a huge comfort. I am so grateful.

Yes, we are still terminal. The course of treatment is to try another remedy if one eventually fails, and so on. The second, third and fourth lines of defense each present less effective outcomes and more troublesome side effects. There is always residual cancer. I will be in treatment for the rest of my life, until I decide the quality of my life is too low to continue. Let me share some figures that are key to my mission:

• 100 percent of women who die of breast cancer die of metastatic breast cancer, breast cancer that has spread through their bodies, most often to their bones, lungs, liver, and brain
• Up to 30 percent of those initially diagnosed with breast cancer will have advanced or metastatic cancer at that time or will develop it in a recurrence
• Between 2 and 7 percent of research dollars go to stage IV or advanced breast cancer

I would like to see 30 percent of breast cancer research dollars going to stage IV cancer, the cancer that kills.

The pink month of October with its implication that early detection equals survival does not serve us well. Those who celebrate their cure after 5 or 10 years of clear tests are deeply mistaken, especially as some hormone-blocking treatments delay recurrences that used to come sooner. Singer Olivia Newton-John’s recurrence after 25 years has brought these issues to the forefront, leading to discussions of how metastases differ from initial illness. Patients with stage IV need to be more vocal, even though this can be difficult.

The idea that I must not have done everything I could to get checked early and often, or to change my lifestyle to fight cancer once I had it is hurtful and insulting. I just happen to be one of the about 30 percent – the more than 150,000 women and men living against the odds in the United States today. Our median survival is 3 years. About 113 of us die daily. I can assure you that I thought positively, exercised regularly, networked with survivors, changed to a largely plant-based diet, wrote about my situation, and sought solace in spirit. And still there were no guarantees. To the extent that my life has been improved by each of these efforts, I can be grateful for the better life I have had.

Metastatic disease is widely misunderstood. Statements like, “If anyone can beat this, you will,” or “When will you finish treatment?” are examples. I will be in treatment as long as it gives me an acceptable quality of life. When I stop receiving treatment to slow cancer, it will grow, my organs will fail, and I will die. In the MBC community, when someone dies, we say, “She finally finished treatment.” Even a statement like “You look great!” can be hurtful (if I think you are saying I’m going to make it, and my first thought is, “But I’m dying!”). It might be easier for me to hear, “I know you are in treatment, but you look very well.” Statements like, “We’re all going to die,” or “Either one of us could be hit by a truck” aren’t particularly useful. None of us know when we will die. But I have received a written invitation and you have not.

In Philadelphia some of us had a die-in on Independence Mall. More than 100 of us lay down to draw media attention and coverage. Lying close to a woman I was sharing a hotel room with, I could feel the warmth of her hand. I told her at dinner that if I had taken her hand I would have burst out crying and would have found it hard to stop. She said, “I knew your hand was right there, too, and the same thing would have happened to me if I took yours.” We were grieving: grieving years lost and plans changed, children not seen grown, goals dismissed. I will be spending my retirement being ill: not my original plan at all. One of the women at the die-in was the last survivor out of 17 in her cancer support group. Thirty trained with me as volunteers in LBBC’s Hear My Voice program at the end of April. Two have already died.

I will never forget the people I met in Philadelphia. For myself, and for each of them, I will continue to spread the word about metastatic breast cancer. Many of my fellow volunteers have spent weeks visiting their legislators and circling Congress, opposing changes to pre-existing condition coverage and changes that prevent access to top doctors. Advocacy is an empowering opportunity even when life is limited. I am so grateful.

Read the second half of Dorothy's sermon here and learn more about Living Beyond Breast Cancer's Hear My Voice Outreach Volunteer Program here.