I Am So Grateful: A Path With Deep Meaning
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 second 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. Read the first half here.
Advocacy for an organization such as Living Beyond Breast Cancer and for other women touched by cancer can be an empowering opportunity for anyone going through breast cancer’s sickening treatments, real pain, and endless uncertainty. Another opportunity is a good hard look at our deaths. Given that we are all dying, myself just realizing I am likely to die sooner than I originally hoped, are there some constructive things to do to approach this change as painlessly as possible, some things to clarify to respect both myself and my loved ones? What am I thinking about when I must rest? Please know that I am walking a path with deep meaning, making decisions for myself. Yes, I am walking a path with deep meaning. I am so grateful.
Let me share.
As a metastatic cancer patient, I was offered a trial of a program called Four Conversations offered by Duke University School of Nursing. I had a hard time starting this online learning experience, and I must say that agreeing to give a lay sermon during our minister’s summer hiatus at my Unitarian-Universalist congregation pushed me to get in there and learn some things I could share. The program suggests having important conversations with yourself, your doctor, your family and friends, and with whatever you define as your higher power. These conversations can save a lot of pain and confusion for yourself and those you leave behind. I know that there are varied courses at the local senior centers. This one included downloads of legal documents, video introductions to each step, handy worksheets and guided meditations to relax you when issues are frightening.
Here’s some work I did:
I thought about my bucket list and about unfinished business. I discovered there was just one place I really wanted to visit while I felt as well as possible, that mostly I wanted to enjoy my home and family, and especially time with my same-sex spouse, who won’t be retiring for another year. The one place was Santa Fe and I budgeted for and booked a trip for this October. Unfinished business is a little more complicated. Is there anyone I need to forgive, including myself? Are there regrets I need to address or let go? Is there anyone I have unresolved and painful issues with? What sort of communication, if any, do I want to have about my current situation with people from my past? Which of my possessions do I want to give away ahead of time, and to whom? Do I have to do anything else to be at peace with my life? Do I want to give up or do I want to have the best day possible, one day at a time? Will my answer to the question change as time passes? It is recommended many people with advanced cancer take antidepressants and work with a therapist. I do both.
In terms of conversations with my doctors, I was surprised how hard they were. I wanted to know my life expectancy and communicate what end-of-life treatments I would not want. I wanted to make it clear that my spouse rather than my brothers held my durable power of attorney for health care. I wanted to know what changes in quality of life to expect so I could decide when to stop treatment. I also wanted to know what dying was like with this disease and how I would know when to begin hospice care. Basically, I wanted to clarify my treatment wishes and communicate them clearly with my doctors. I still do not know what quality of life I will require to go on, or what exactly will make me decide to stop fighting.
To give my oncologist credit, she does not really know how long I might live with the new treatment I am on or even newer treatments that could become available. I trust her treatment choices for me. But she was clearly uncomfortable when I asked about my life expectancy. She repeatedly inquired if I really wanted to know, finally telling me I could expect to live 2 or 3 years. I was shocked, because I love my life. Other doctors have told me they consider it unethical to tell patients a life expectancy. I have decided my oncologist is wrong and I am going to be someone who will do better. I will work with the social worker at the cancer center on my end-of-life issues, rather than my oncologist. I have now lived with this diagnosis 2-and-a-half years. While most of the people I met at the Living Beyond Breast Cancer conference in Philadelphia this spring had survived 3 years or less, there were others who had survived in treatment 5, 9, and even 19 years. Meeting and speaking with them gave me courage and especially hope. I am so grateful.
Discussions with family and friends are very important. When a dying person has not shared their wishes, death can leave troubling emotional wounds between family members. There can be arguments about what to do and what the deceased wanted. Often the dying person is not the only family illness or crisis. A sick child or a struggling young adult may have had the main family focus before the metastatic cancer diagnosis. The more that is clear ahead of time, the better. I need to have a conversation with my brothers about my same-sex spouse and I deciding together when to stop treatment and ask for their support for my decision, and I need to have our legal documents (marriage license, durable power of attorney for health care, and asset transfer authorization) easily accessible. I have strong feelings about who I want to have visit me during hospice care and must clarify that I prefer prayers be shared at a distance, not at bedside. A resource such as Five Wishes helps those at end of life list preferred visitors, music, prayers and care. I have already begun scheduling special times with people I love and this year have begun including personal, loving poems in birthday cards. I need to outline my after-death wishes for a memorial service, condense the obituary I have drafted, and continue meeting with my minister. I have already pre-donated my anatomical remains to The Warren Alpert Medical School of Brown University, in Providence, Rhode Island, and there have been no objections to my choice. I am so grateful.
Discussions with spirit or whatever you might define as your higher power for your own comfort are the last of the Four Conversations. While open-minded and inclusive, my very secular Unitarian-Universalism is not much help with this. While some may believe Jesus is waiting to take them into his arms when they die, and those with other faith traditions may have clear beliefs held from childhood, we in UU are left to find or craft our own comfort. Many of us rejected, or felt rejected by, other traditions. This has left a space to be filled. While I am not afraid, I do want more comfort than simply freedom from pain or freedom from wondering when I will die. I have had intuitions of what after-death might be since childhood, writing a poem about it in my 20s. More comfort was found in a book by Helen Greaves called Testimony of Light, which offered the consoling idea of being able to have positive influence after death. For me this model gives me not emptiness but the opportunity to continue my activism. I am so grateful.
Any crisis can be considered an opportunity to grow into the challenges it contains. In dying, there is an inevitable end to the crisis. How much will each of us choose to grow before that time comes? Will we be angry, with important matters unsettled, important conversations unsaid? Or might we rejoice at a life well lived and a well-deserved peace to come? I am sure I have more than 6 months to make these important decisions, to have these essential conversations. I am so grateful.
Learn more about Living Beyond Breast Cancer's Hear My Voice Outreach Volunteer Program here.