Ellen has always liked to do projects. She’s always had a list of projects going and the most recent one hung out the entire summer on the end table next to where she would sit on the living room couch. Recently, Eric, Kathryn, and I reviewed that list, made in April, and began assigning the projects not yet crossed out. Here’s a sampling:

• Buy new spoons – replacements CLF31 by Cellar, plume @ tip, Tools of the Trade
• Update the BCD trans.html page [how the school supports trans kids]
• Midwife of the Soul (Eliz) [buy for hospice nurse Elizabeth]
• Eric’s paper [edit]

Ellen has called management of her health while living with metastatic breast cancer the “Ellen Project.” What a complex project, with a dozen symptoms, multiple immune-system boosting activities, a dozen health care providers, a dozen medications and another dozen supplements, and over a dozen brain mets to track and manage. As she has become less able to manage the Ellen Project, others have had to step in. We have come to know numerous details about her medical case, including what might be causing what (such as a headache) and how best to address it (need to taper steroids more slowly?). We have not completely replaced Ellen’s brain in managing the Ellen Project (no surprise there), but we are doing okay – maybe we get a “B” while she always gets an “A” (see Ellen’s Report Card).

The days are getting more difficult and the nights are no longer very restful. Ellen seems uncomfortable a lot of the time and we’re facing that challenge of balancing enough pain medication (morphine) to make her comfortable with little enough medication that she’s alert enough to interact with those around her. Ellen has said lately that she’s tired and at the end of her rope. And yet, she has not wanted sympathy and certainly not pity. She has not wanted good-byes. She’s expressed discomfort at “this is what you’ve meant to me” letters received in the spring and summer, but also read them with pleasure while thinking of the meaning of her life and her life accomplishments. One thing is for sure – she doesn’t want maudlin* and doesn’t want us doing maudlin things. Whatever you do, don’t launch into the song Dear Friends.** If she had the energy, I could see her creating and putting up a sign such as this one:

Favorite quote of these past few days: Eric says, “I’m going downstairs to get some breakfast and I’m going to leave you with Spee.” Ellen replies, “Can I keep you on retainer?”

We’ve been sorting through hundreds of photos and finding one after the next of Ellen’s beautiful face. Here is one of my favorite photos of Ellen and Eric, taken at Dorson’s Rock above Powell House during a family outing that included not very successful efforts to send paper airplanes flying off the edge of the cliff.

With gratitude today for Ellen’s warm smile, for shared therapeutic Colorku*** with Kathryn and Anne as we accompany Ellen and Eric during this long labor, and for QIVCers coming together at this time to hold us all in our collective hands and hearts.

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* Definition: Showing or expressing too much emotion especially in a foolish or annoying way, weakly and effusively sentimental
** Lyrics: “Dear friends, dear friends, let me tell you how I feel, you have given me such treasures, I love you so.”
*** A game like Sudoku, with colored round balls instead of numbers