Updates on Dor

February 4,  2020
Dor may be showing signs of neurological involvement. We can't say for sure because of course there are no brain scans on hospice. The neurological effects are loss of some vision in one eye and a short memory lapse. So far they aren't getting worse but we have organized for there to be someone at the house most of the day so she can feel more secure. (Importantly: The whole how-you-feel-is-data practice has really served well here. Dor credits her studied capacity to observe experiences without judgment as a key factor in dying well.) In spite of being in some pain, she's still getting up and making herself tea and toast -- about all she eats -- and her brain is functioning just fine. She is sleeping a lot more and frustrated that she has so little energy. We are definitely not scheduling visits, but Alison is happy to pass along messages: hankinsona@gmail.com
January 15, 2020
Dor rests quietly at home and still requests no visitors. She told us she's getting her top wish: no brain involvement -- at least so far. She still writes, knits hats for her kids, and makes the occasional video. When people express sadness or anger over her situation, she has two responses: 1) gratitude for the the lung draining technology. Her first symptom in April to her trip to the emergency room was only 12 days. Were it not for that technology, she would not have had the last nine, highly enjoyable and productive months. 2) She aspires to welcome all visitors, as described by Rumi here:

The Guest House

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.
January 1, 2020
Dor feels that she is losing ground and she's having a hard time deciding to make any more videos. She feels skinny, deteriorating, and not sure she'll be effective anymore. She also still feels funny, loving, and full of important messages. As she passes the median survival time and experiences exceptionally high quality of life on hospice, she worries about people who get a terminal diagnosis: "How will they get information to inform their treatment decisions?" These videos are the only way people will hear about her choices and the quality of her life outside the treatment establishment.
In this video, Dor shares her concerns with Corinne Zupko, counseling professor, The College of New Jersey. The second part is about the "five love languages." Dor struggles with loved ones and visitors and revisits Gary Chapman's work. She realizes that her miscommunications can be explained by Dr. Chapman's love language work of 25 years ago. Even though his program was designed for couples, it's highly relevant for love expression as she nears the end of life.
December 14, 2019

Dor is in some pain these days but so far is only using Tylenol, although the morphine is measured up for when she's ready.  She is more tearful, but her brain is functioning just fine and she still has plans for a few more videos. Last seen, she was working hard to make sense of the regulations for assisted dying which became law in NJ last August. In typical Dor fashion, she is working on writing clear and simple instructions to share with us.

She eats little at the moment as it makes her very uncomfortable, but she still drinks soup and broth which she either makes herself or requests from willing friends and neighbors. (Don't bring any unless you are asked to!)

She still tries to walk each day to exercise her remaining lung and sometimes finds it easier than sitting. She is knitting up a storm with all the yarn she has accumulated over the years and has finished about five projects! She has multiple bird feeders just outside the window of her bedroom and enjoys watching the wonderful variety of birds as she rests.

At the moment she values time alone and has limited visits. We won’t be scheduling any more until at least after the holidays.  

November 9, 2019
After enjoying several weeks of more energy, Dor has slowed down. This is the third time she has gone into a slump; she pulled out of the first two for inexplicable reasons, so we are not drawing any conclusions or making any predictions. 
In the meantime, Dor has made a series of short videos to share with the community. This was motivated by friends who have shared fears and concerns and need the world to be more predictable. Dor also wants to help people with end-of-life planning. The series is called "Dying Dor's Way: Radically Real Spiels on the End of Life." Click here to watch the first one. Once all of the videos are available, they will be posted on a separate page and a link to that page will be here. 
Alison Hankinson is still managing Dor's correspondence and schedule: hankinsona@gmail.com
October 24, 2019
There is little news on the medical front since on hospice there is no longer any imaging. With nice old-fashioned palpating and stethoscopes, Dor says, "my lung is smaller; my liver is bigger; I have more energy now than I had three months ago. So go figure." She's really enjoying working with visitors who want help with their own end-of-life planning. That includes making sure you have all the documents you need to avoid unnecessary pain, confusion, and expense for you and your loved ones as well as helping friends identify their personal "portals of entry" into end-of-life conversation. Her friend Alison is scheduling afternoon visits: hankinsona@gmail.com 
September 10, 2019
The transfer of Dor's garden from Patton Avenue to Hopewell is halfway done. Carolyn Peucker, Lauren Bender, Adrian Hyde and Roger Martindell masterminded the project. All of Dor's children were on hand and we had lots of helpers. Priscilla Algava's family visited while we were working. We divided the perennials, dug out herbs that Dor had started from seed in April, detached a chunk of the fig tree and loaded it all on Adrian's truck. Over the next few weeks, deer protection, irrigation and planting will be completed at his farm in Hopewell.
September 10, 2019
Dor has hired someone to schedule visits, which will now be on a quite limited basis. You may contact Alison at hankinsona@gmail.com. Dor wants her Suppers friends to know that hospice set up the hospital room in the dining room where hundreds of us have shared meals. The room is filled with your spirits, love, and intentions to not judge.  
Dor just can't stop teaching. If you haven't checked out the resources she prepared on end-of-life planning, the links are below. She is confident you will find ways to spare yourself and your heirs a lot of heartache, prepare loved ones, protect assets, and set forth your intentions so that your wishes for care are executed.  
August 18, 2019
Dor needs some quiet time now. So, for the time being she is unavailable for garden visits. We will keep you posted when visits resume.
July 31, 2019
Dor asks that visitors please visit between 5:00 and 6:00 pm weekdays. She intends to be in the garden to receive visitors, but if the weather doesn't cooperate, please join her -- she's ready for friends inside. Guests are still encouraged to take home plants from the garden and to sign up for "care jobs" for when she needs help with errands, cooking, etc. 
July 9, 2019
Visitors please plan to stop in between 5:00 and 6:00 pm weekdays. EXCEPT for this Friday, July 12, Dor intends to be out there Monday through Friday instructing as many visitors as cooperate on how to dig out a plant to take home and establish in your own garden.
Dor's status will officially change to hospice on July 15.  She is still feeling well, even if low-energy, most days -- but she relies on the services of visiting nurses to keep her home and comfortable.
There are sign-up sheets in the kitchen for when Dor needs to lean on friends more. Please check them out when you visit. She is still able to cook her own food most days and do close-by errands, but she'd like to know whom she can call on when she needs more help.  
June 20, 2019
Dor has been making arrangements for palliative and then hospice care, and has been delighted with how smooth this process has been. Visiting nurses have taken over the details of managing her care -- they make house calls two to three times per week -- and are available to her 24/7 if necessary. The best possible combination of comfort and mental clarity is Dor's priority; everyone on the team sees to it that this wish is granted.
Dor is still up and around, but on a more limited basis. As you can imagine, many people want to visit. Dor has asked to let you know that short visits with her in the garden, weekdays between 5:00 and 6:00, are most convenient for her. You are welcome to stop by during that time. 
May 31, 2019 (Newsletter)
Dear Friends,
Some of you may not have yet learned that Dorothy Mullen has been diagnosed with stage 4 lung cancer. By sending this note, we want to share with you what is happening with Dor and with the future of Suppers. Over the past two years, Dor has been working with the Suppers’ Board to create a succession plan to ensure the sustainability of the organization. This diagnosis has accelerated the pace of this plan.

To say we are all shocked and saddened by this news is an understatement, however this past year has been an exciting one for The Suppers Programs. We have successfully piloted two 8-week fee-based programs: Managing Blood Sugar and Improving Brain Health. We successfully piloted a program in the Trenton Community in partnership with the Westminster Presbyterian Church, and we’re piloting a program this summer in partnership with the Trenton Farmers’ Market. Please take a look at the types of programs we offer.

In Dorothy fashion, we are working together to continue the groundbreaking work she developed in collaboration with the dedicated Suppers Community -- members, volunteers, staff, farmers, medical partners, community partners and the Suppers’ Board of Trustees. We ask that you stay with us and look for news about the future of Suppers.

Below is a note from Dor.

Have you ever been to a Suppers meeting with me? If you have, then you’ve heard me say, “I feel more energetic in my sixties than I did in my fifties, forties, and thirties.” It’s true! It involved doing a lot of homework in the form of detoxing heavy metals and learning how to live. My journey became the fuel and building blocks that formed Suppers.

In early April, things changed. In a matter of days, I progressed from having no inkling of a problem to receiving a diagnosis of stage 4 lung cancer. Let me create some context. Since age 15, I’ve struggled with health problems that almost certainly relate to a combination of genetic vulnerability, heavy metal toxicity, and environmental factors. I am a living perfect storm.

As a result, I wasn’t surprised about the diagnosis. In fact, given how compromised I was starting out, I’m thrilled that I’ve been able to enjoy decades of exceptional energy and clarity.

Now I am navigating through a medical system with which I am completely unfamiliar and I’m learning that managing metastatic cancer is a nearly full-time job. The good news is that my friends are all here for me and falling over themselves to be helpful! A truly beautiful moment.

I’m looking at my beautiful garden. I’m looking at my counters and table, my friends and members. And, I’m wondering how all these ingredients -- the food, the cooking, the people and the program -- will orchestrate themselves into Suppers as I become less involved. The answer is in the succession plan that the board has been working on for years; now it will move at an accelerated pace. 
What I know… Suppers will continue to exist because of a team of dedicated and engaged staff, Board members and volunteers who are committed to the continuation of our program. I’m aware that some things will need to change. To oversee this transition, I have placed the leadership in the capable hands of Lee Yonish, who will serve as our Interim Executive Director. Lee has served as a Trustee of our organization since 2012 and is working with the team to build an economically sustainable future for Suppers. Keep an eye out for information as we have it.

Dorothy Mullen and Lee Yonish
What to expect… You can expect updates on the transition to our next phase, and that Suppers will continue to deliver on its mission: to provide safe and friendly settings where anyone -- and especially people with food-related health challenges -- can develop and manage their own personal transitions to a healthier life.
Stay with us...  Dor
P.S. To keep my email inbox manageable during this transition, I request that messages be sent to my assistant, Rachel DeBoer (rachel@thesuppersprograms.org). You will warm my heart by sharing what you have learned and how your life is better because of Suppers. Please leave suggestions regarding my care to the treatment providers I've chosen.
May 7, 2019
No further health updates at this time. Rather, an important message from Suppers Medical Partner, Karen Flicker, M.S., L.Ac:
Dor asked me to compose a short piece on mercury toxicity to help our Suppers community make sense of her diagnosis. She doesn't want anyone giving up on environmental activism or the organic lifestyle. She has been dealing with the consequences of mercury toxicity since adolescence and is actually not surprised she is diagnosed with cancer.
The element mercury is second only to radioactive plutonium in its toxicity to human tissue. It's a neurotoxin and endocrine toxin and changes how genes express. Dor carries the gene (MTHFR) that makes it harder for people to methylate -- detox -- heavy metals. There are many lifestyle ways to compensate for that "dirty gene," see Ben Lynch’s book Dirty Genes. She imagines that her eating as green as possible and filling her life with purposeful activity and supportive community bought her a lot of high quality, high energy years.
If you’d like to find out more about mercury and its effects on our health, here’s a link to Dr. Mark Hyman’s blog, in which he describes his own experience with mercury toxicity and shares information acquired at an international conference that was presented at Tulane University entitled “The Impact of Mercury on Human Health and the Environment." I think you’ll find it very enlightening.
April 27, 2019 (Newsletter)
Dear Suppers Members,
We're writing to inform you about Dor's health status. As some of you already know, Dor has recently reduced some of her activities at Suppers. She has been diagnosed with stage 4 lung cancer and is considering treatment options. We have no further information at this time, but will be posting updates here.
Please know that Dor is in good spirits, and in fact, is "not surprised"... she has been managing the effects of mercury toxicity since she was 15 years old. She has much to say on this topic, so stay tuned. We also want to reassure you that Dor and the Suppers facilitators are as fiercely dedicated to Suppers -- and to delivering its mission -- as ever.
We know how deeply the Suppers community cares about Dor. If you would like to extend your best wishes to her, please send a note to rachel@thesuppersprograms.org. Dor always finds tremendous joy in reading how Suppers has impacted lives.  
All best,
The Suppers Board