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Deb & Andy

We were married for 48 years, raised three children, and now have seven grandchildren. In June of 2014, the month we both retired, Deb was diagnosed with GIST cancer (gastrointestinal stromal tumors) at age 65. Her particular form of GIST was incurable. We learned that she would die from this cancer, yet we never knew when or how. Deb spent most of her five-plus years in treatment with the same wonderful oncologist and palliative care doctor from Norris Cotton Cancer Center. Deb took two oral chemo drugs for about four years, with side effects ranging from minor fatigue to nausea, diarrhea, and the need to sleep most of the day away.

Early on and in the easy times, we bought a small camper and traveled across the country to see children and new grandchildren. Then, in the fall of year five, Deb’s medications stopped working. With the support of her oncologist, she enrolled in a clinical trial at Dana Farber. Unfortunately, her tumors continued to grow at an accelerating rate. This new growth caused Deb to elect to have a complicated surgery at Brigham and Women’s. This 6-hour surgery also brought Deb seven days in the ICU, seven days on a general floor, and two weeks in rehabilitation before we returned to VT. We came home from Boston knowing that the past six months of treatment had not altered the inevitable. 

In June, with her oncologist and palliative care doctor’s guidance and support, Deb started care with Bayada Hospice. She spent her last nine months at home, off most medications, feeling as well as she had felt in a long time, and had many hours of quality time with our children and grandchildren, friends, and neighbors. Then, in March of 2019, during one of her biweekly hospice appointments, signs showed a change in her health. We gathered family from across the country by the weekend, and Deb passed away peacefully the following Sunday, with all of us nearby.

Learnings -

1. Deb’s biological family had no cancer, no chronic diseases, and many had lived into their 90s. She had been hospitalized only once in her entire life for the birth of one of our children. This cancer was Deb’s first health issue and her first significant encounter with the public health system. 
2. Initially, I thought “we” wanted more information, answers, and timelines. But, I was to learn that Deb did not want the same information that I wanted. Soon, I also realized that this was Deb’s journey, and my role was to support her in whatever way I could. Although not easy, this was the “for better or for worse” part of our vows 48 years ago, and I knew that she would do the same for me.
3. A lifetime of retirement plans to travel, volunteer with national non-profits, and spend quality time together and with our children was gone with the words, “you have cancer.” Deb felt responsible and guilty for causing this change in our lives. It was important that I acknowledged her feelings and did my best to embrace this new direction and all we could make of it together.
4. We realized, early on, that Deb’s cancer journey was a team event, and we were the team managers.
5. We learned to take counsel and direction from our oncologist and our palliative care doctor.
   • Being assigned a palliative care doctor within a month of Deb’s initial diagnosis proved critical in helping us to navigate this cancer journey.
   • We prepared for each appointment, read the post-appointment notes on MYDH, and followed up with our oncologist when necessary. We always received a timely reply to our questions, comments, or concerns.
6. At a point, early on, Deb moved through her anger from “why me, why now” to “what positive things might come from where I now find myself?”, “living indeterminately with a terminal illness.” Deb came to view most days as a gift, holding most as an opportunity to talk or email with one or more of our children or her family, hug a grandchild, share a dahlia, or just have tea with a friend or neighbor.
   • I know this shift in feelings and actions were influenced by our Palliative Care doctor, Deb’s writing group, and our time with other GIST patients and their care partners. 
7. Within the first year of her diagnosis, Deb joined a writing group sponsored by the Norris Cotton Cancer Center, Patient & Family Support Services. From the beginning, and often without addressing cancer directly, the leader helped Deb and others in the group gain perspective on their journey, cancer, family, and much more. Deb joined five or more groups over her journey and has left a legacy of poems, letters, and notes to her family, children, and grandchildren. It is important to know that Deb and many other group members did not consider themselves “writers” when they started.
8. As this was Deb’s first encounter with cancer and with a serious illness of any sort, we sought out and received insights from other GIST cancer patients and their caregivers through an online GIST listserv community. 
9. Deb’s medication(s) were costly, and although we had insurance, it did not cover the copays. However, through research on the web, guidance from Dartmouth-Hitchcock patient support services, and the State of Vermont, I found support and help with this expense through a non-profit organization, Patient Services INC.
10. Deb volunteered with Bayada, our local Hospice agency, years before she considered needing hospice. Volunteering with them helped us better understand their services and how they work to support patients and caregivers. I am sure these experiences helped us choose Bayada as our hospice provided.
11. Hand to Heart Project came into Deb’s journey to provide in-home massage when the side effects of her medication were increasing. No matter how poorly she felt when they arrived, she always felt better and wished they might stay a bit longer. 
12. Guided by our Palliative Care doctor, we learned to do, write, and say whatever we could today, for it would only become more challenging and more complicated if we put off these things until tomorrow. 
    • Advanced Directives (AD)
      • We spent time clarifying how Deb defined her “Quality of Life” with our oncologist. 
      • Our AD was always a work in progress and changed over time. 
      • Our AD was also Deb’s guide when the time came to decide to enter hospice.
    • We reviewed and updated our wills.
    • We talked about funeral plans. 
      • Deb decided that she wanted to be cremated.
        • We talked about where she would like her ashes spread.
        • We also decided to keep a small amount of her ashes to mix with my ashes when my time comes.
      • Deb drafted an obituary.
      • We talked through whether she would like a church memorial service or a celebration of life.
        • She chose a Celebration of Life, and she drafted a very rough outline.
13. We did our best to keep our children and Deb’s family fully informed throughout her entire journey. (One child lives in CA while everyone else lives in New England.)
    • When first diagnosed, Deb had individual conversations with our three children, her parents, and brothers.
    • In addition to Deb’s individual and family calls, I sent an email update to our children and Deb’s family following almost every appointment and whenever our oncologist noted a change.
    • Deb communicated with our larger circle of friends with calls and emails.
    • During the occasional family gathering, we set aside a block of time to sit together, to bring everyone up to date with what we knew at that time, and to provide everyone with time and space to ask questions or just to be present together.
    • When there were significant changes, I called each of our children individually before sending an email.
    • When Deb reached the point where the traditional treatments had stopped working, we moved our more public communication to “Caring Bridge.” I continued to write to our children and Deb’s family before each CaringBridge posting.
14. We continuously sought their advice and support following our decision to begin hospice care at home with Bayada.
    • We met with their case manager, their social worker, their doctor, and their nurses. 
    • During the last few days of Deb’s journey, a Bayada nurse offered to meet with our children to answer questions and provide support.
    • The same nurse guided me through what the last few hours of Deb’s life might most likely involve. 
      • The nurse also asked if our children would like to pick out the clothing Deb would wear when she was taken to the funeral home. 
        • I know this was an important and meaningful step for our children.
      • These meetings proved critical as Deb passed away at 12:15 am, and I needed to guide our children and the process through the next few hours.
    • I also met with the funeral home director about two weeks before Deb’s passing. His information, support, and guidance also proved very helpful as I worked to keep our children informed and reassured.
      • We were hopeful that Deb would remain at home. The funeral director walked me through the steps involved in contacting him when he would come to the house, exactly how he would take Deb from the house, and offered to let me assist in this process. He also outlined the timeline and general steps until the cremation was complete and I could return to pick up Deb’s ashes. Later, the morning of Deb’s passing, I called him and asked if I could sit with Deb, alone, one last time, and he arranged for that to happen.

Preparing did not make this End-of-Life journey any easier. However, it did mean that Deb and I were never alone, and “our team” was there to guide and support us when we needed them the most. 

Now what!

I joined an online bereavement group sponsored by the Dartmouth-Hitchcock Aging Resource Center in October or 2020 with 11 other individuals. Although the formal group meetings ended in December, we are still meeting bi-weekly. We each came to the group through a very different end-of-life experience. However, we have bonded, and I think many of us would say that we have grown together into a caring and supportive extended family.

I volunteer at DHMC and the Jack Byrne Center. I have three wonderful children, seven terrific grandchildren, a supportive extended family, and good friends and colleagues. They all provide many opportunities to rekindle memories of Deb and of our time and travels together. I talk about her often. “What would Deb think? “What would mom say?” “What would Grammy do?” Although I am not a gardener, I am learning to care for her gardens, keep her dahlias blooming, and give bouquets to our family, friends, and medical support teams.

Read at Deb’s Celebration of Life May 19th, 2019

Look to this day:
For it is life, the very life of life.
In its brief course
Lie all the verities and realities of your existence.
The bliss of growth,
The glory of action,
The splendor of achievement
Are but experiences of time. 

For yesterday is but a dream
And tomorrow is only a vision;
And today well-lived makes
Yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well therefore to this day;
Such is the salutation to the ever-new dawn! 

Kalidasa