Life Lessons from a Man I've Never Met

We will be known forever by the tracks we leave. - Dakota proverb

Last spring, I was allowed to participate in two classes because of the generosity of faculty members of the University of Washington School of Medicine. The two classes are "The Healer's Art" (a medical school elective designed by Rachel Naomi Remen, M.D.), and a "Values Clarification" exercise - part of the 4th-year curriculum in the Chronic Care Clerkship for students about to embark upon their residency program. The Values Clarification class was created by a man named Stuart Farber, M.D., who recently passed away from leukemia.

Dr. Farber is revered and loved by his colleagues and students, family and friends. He founded, and was director of, the Palliative Care service at the University of Washington Medical Center. He was a pioneer in the field, helping to develop a palliative care training center at the University of Washington.

In a terrible coincidence, his wife Annalu was also diagnosed with the same kind of leukemia (AML) four months after Dr. Farber's diagnosis, so they each walked in the role of patient and caregiver, supported by their family and community. This journey served to deepen and further inform his sensitivity in what he already believed and taught to his students. In each caringbridge.org update on their health, Dr. Farber and his wife shared their love of poetry by posting a poem chosen to express their feelings of the moment. I learned a great deal about the Farbers (whom I have never met) from those poems, and a great deal about the ways in which art can bring release and healing to patients and caregivers.

The Values Clarification exercise was administered by a wonderful professor named Tom McNalley, M.D., director of the Chronic Care Clerkship (whose specialty is Rehabilitation Medicine), and his gifted colleague, Carol Kummet, LICSW, MTS, a social worker with the Palliative Care Service. Both facilitators exuded seriousness tinged with gentle humor, compassion and empathy. Experiencing the Values Clarification with young medical students was a deeply moving gift to me, and one that I will never forget. It is an important part of Dr. Farber's legacy.

Another vital part of Dr. Farber's legacy is an article which was published posthumously, which I cannot recommend highly enough for EVERYone to read. It was published in the Journal of Pain and Symptom Management, Vol. 49, No. 4 on April 4, 2015, and made available by Dr. Farber's widow here:
http://www.sciencedirect.com/science/article/pii/S0885392415000755
under the heading, Humanities: Art, Language, and Spirituality in Health Care. Isn't that a powerful heading? The article is called Living Every Minute. I have read it twice, and am simply in awe of its grace and power. Whether you are a patient, family member of a patient, a clinician, an artist or a spiritual seeker, this article will be a gift to you.

Many deep truths of living, of the value of quality of life over quantity, and the supreme importance for clinicians and caregivers to seek, find and understand what is most important to their patients is beautifully illustrated in Dr. Farber's words and his life. Much is expressed poetically, with far more accuracy and nuance than the most scientific language could ever describe or quantify.

You can read more about Dr. Farber's life and legacy HERE.

Reiki and Other Blessings

Sunrise on March 8th, 2015

Thank you for your kind thoughts and words around Katie's 20th birthday. We had a lovely day - which is in itself a kind of miracle, considering the circumstances - including a beach walk, delicious brunch at Alchemy Bistro and Wine Bar in Port Townsend, and a movie, with popcorn for dinner. A truly "Katie" kind of day.

Toasting Katie at brunch

Last week, I had the pleasure of accompanying our friend Charlotte on a tour of Building Hope at Seattle Children's Hospital. You may recall that David and I had a brief tour of the building in November for the purpose of a photo shoot, featuring Katie's Comforters Guild in the Guild News.

A patient receiving her blanket from Katie's Comforters Guild, represented by yours truly

On Thursday, Charlotte and I toured the Emergency Department, Cancer Ward and the Cardiac Intensive Care Unit. This new building is a great advancement upon what was available to us during Katie's treatment eight years ago. It is absolutely state-of-the-art, in every way.

There were wonderful surprises for me on this day, as we were met by several staff members who had taken care of Katie at her most fragile: during chemotherapy, and after her 18-hour surgery. It was a pleasure to be able to introduce these gifted caregivers to our friend, and to have them explain to her what they do, and how the facilities in this new building make it possible to make patients and families even more comfortable during the most stressful time in their lives.

We ran into one of Katie's dear oncology nurses

I am grateful to Drs. Baden, Brogan, Jeffries and Mazur for their generosity with their time on Thursday. I'm also thankful for all that they and their colleagues have done (and are doing) to save children's lives, as well as to the nurses and technicians who support their work - and to the donors who made this building possible! It truly is a team effort.

Since taking first-degree (Shoden) Reiki in November, I have been practicing daily, and looking forward to taking the next class (Okuden, or second-degree). I was able to do this a couple of weekends ago through Emerald City Reiki in Seattle.

My certificate of completion, with gratitude to Reiki Master Claire O'Shea.

Reiki brings peace, balance, calmness and relief from physical problems such as pain, digestive upset, stress, insomnia and much more. The potential for healing seems unlimited. The more I read about it, the more I enjoy learning from its practice, for Reiki isn't something that one learns from reading; practice is the most important way to learn. I find it has given me a new way to pray for myself, and others; it has restored a language of prayer which I had lost, and enhanced it, by keeping it free from "dogma." This freedom leads to pure joy and love when practicing Reiki. I think of it as a manifestation of the Holy Spirit, or healing power of God. [If you have questions about it, one of the best books I've read is called "Reiki: A Comprehensive Guide" by Pamela Miles.]

Update on Grandma:  we now have a routine in place for supporting Gregg's parents. We all take turns bringing Grandpa Ed to see Grandma Elaine, sit beside her bed with him until he gets tired, and then take him back to his home in assisted living (we are still waiting for a bed to open for Elaine in the same facility where she and Ed have been living). Gregg visits his mother nearly every day after work.

I am thoroughly enjoying serving on the board of the Bainbridge Public Library. What an interesting and generous group of people! At each meeting, I learn new things, and am grateful for the kindness and sense of community spirit among the members. Last Friday was my first time helping to host an artist's exhibit during the "First Friday" Art Walk. We host a different artist in the Community Room of the library each month. This month, I'll take a class to qualify for a certificate which will allow me to serve wine at these events.

Field's End (a committee of the Bainbridge Public Library) continues to offer opportunities for growth and stimulation for writers in our community. This week, we're hosting a Story Slam at Treehouse Cafe on Bainbridge Island, and on March 20th, there will be an Open Mic at the Poulsbo branch of Kitsap Regional Library. A Travel Writing Workshop will be taught by Perry Garfinkel in May through Field's End. If any of these events sound like fun to you, please visit www.fieldsend.org for more information.

Dr. Jim Olson and Project Violet

When Katie was in the hospital, she had a number of "attending physicians." Each of these doctors rotated for about three weeks "on service," and then three weeks off. They might have expertise in different cancers, such as neuroblastoma, leukemia or brain tumors, but they take care of a varied group of patients on the ward while they are "attending." After three weeks on, they have a few weeks away from the ward for research, teaching, service in other venues, etc.

One of Katie's attending doctors was Jim Olson, a brain tumor specialist. I knew about Jim before Katie got sick because he had taken care of Hayden Strum, the son of my friend Kathleen. Kathleen loved Jim and his way of being with patients and families, and Jim had loved Hayden. He found great inspiration for his research in Hayden's life - and in his death. In the strange new environment of the hospital, I looked forward to meeting the friend of a friend.

Jim took excellent, compassionate care of Katie (and later, of our friends' daughter, Hannah Hunt). He is gentle, thoughtful, calm and kind...and brilliant.

Since Katie's passing, Jim has invented of Tumor Paint. This new substance, made from scorpion venom, enables doctors to find, identify and mark cancer in the body so that it is much easier to remove in surgery - without damaging healthy tissue. Tumor paint makes cancer cells light up, so that surgeons can differentiate it from healthy cells. This is important in surgery in general, and vitally so in brain surgery; any healthy brain cells taken out - and any cancer cells left in the body - can lead to devastating effects. This paint will make surgery more accurate and less damaging.

I received a letter from Dr. Olson, asking me to share his latest news with you via the TEDx talk below. His letter read, in part:
"To raise awareness about the importance of discovering and developing drugs for cancer patients, our goal is to have 20,000 people view the TEDx talk this month - I hope you will help us achieve this important goal.  The Washington Research Foundation has generously offered to donate $10 to support our work for each time the talk is viewed, up to $50,000."
PLEASE take the time to watch this video, and allow me to introduce you to Dr. Jim Olson, who has one of the best bedside manners we encountered in pediatric oncology - in addition to being one smart dude. You will feel his passion for his work, and the reasons why he keeps doing it.

Want to know more? Please go to projectviolet.org to learn how you can get involved!

Interviews

The past two weeks have been a whirlwind of activity, veering back and forth between fast and slow, and packed with significance. It is still hard to believe some days that this is my life.

Two Mondays ago, Paul and I went to Seattle Children's Hospital to interview two staff members: Karen, a chaplain, and Dr. Cohen, the heart surgeon, both of whom were very important in Katie's cancer journey.

Karen Taliesin is a gifted minister, open to all kinds of spirituality, who brings love and peace into the room when she enters. She was a lifeline to me in the hospital - a representative of God's loving, courageous, humorous presence in the midst of the craziness that is pediatric cancer. She was one of the few people whose presence was acceptable to Katie, and who brought peace. Those 10 months would have been much darker without Karen. She consented to be interviewed on camera, and it was a pleasure to be with her again and hear what she has to say.

Dr. Gordon Cohen is a brilliant pediatric heart surgeon. He removed the part of the tumor which was in Katie's heart. Discovering that her entire inferior vena cava was full of tumor and had to be removed, he re-fashioned a connection for her blood to flow using her own tissue. He repairs the hearts of the tiniest infants, too, and he does it very well indeed.

Dr. Cohen agreed to speak with us on camera, but instead of beginning our session at 10:00 A.M., he was called into surgery, and was delayed until 2:00 P.M. There are not a lot of people in the world who can do what he does, so when he is called, he goes to help. And we were glad to wait for him; we feel strongly that videotape is not as important as pediatric heart surgery!

Dr. Cohen spoke to us candidly for 45 minutes on camera, and for some time afterward, off-camera. He took me right back to Katie's surgery, and it was painful, but for the purposes of our video, it was vitally important. The same feelings arose when listening to Dr. Waldhausen - I was back with Katie, and her life was in grave danger - but she was still alive, with hope for recovery. It is hard to re-visit those memories.

Yesterday, Paul and I interviewed our last subject: Amy, Katie's wonderful hospice nurse. Amy brought peace and comfort into our lives when all hope for recovery had receded, replaced by prayers for mercy, love and an easy death. Our prayers were answered, with God's (and Amy's) help.

As I sat with Amy, her words took me right back to the days of Katie's dying - the four weeks of uncertainty, and the painful steps involved in accepting that we had to let Katie go as easily as we could. Reading and signing the "Do Not Resuscitate" form. Learning about medications we hoped we would never have to use. Facing each day with the purpose to be and provide whatever Katie needed, no matter what happened.

At one point, I thought I was going to be sick. It came over me suddenly, a wave of deep nausea, and I had to pray to get through it without vomiting, as the cameras were rolling and Amy was speaking. It passed, but the feeling shocked me. After four years, the power of those events is buried in my psyche and my body on a deep level. I do not re-visit Katie's dying process in detail in my mind. Going through it once was horrific, yet sacred; remembering it in detail yesterday was just plain horrific...but it is worth it, to do this work.

We are thankful to each interviewee for his/her time, dedication and generosity of spirit in remembering these events and sharing his/her thoughts and feelings about it, more than four years later. Now, we move on to the editing of all of these pieces.

Through the process of listening to others, I have been gifted with many deep truths and passionate feelings in their words. This work raises many questions in me, and it stirs a desire to ask more questions and listen more deeply to those who accompany us in our darkest moments. They possess a wealth of knowledge and experience that cannot be duplicated, and it deserves to be preserved and heard. Who knows where the path leads next? I can only leave that up to God and take the step that is right in front of me now.

Busy, Busy, Busy...

Inside of St. Peter's in Rome (Gregg took this on his business trip)

This has been a busy week, and it's not over yet!
On Monday, Paul Dudley (of Paul Dudley Photography) & I went to Seattle Children's Hospital, and had the privilege and pleasure of interviewing two of Katie's doctors and her physical therapist on video. I can't tell you how much I enjoyed this process, once I got over being nervous. It was probably the best day of "work" I've ever had in my life.
I had asked for 5 minutes from each of them, and led with the question: What did you learn from taking care of Katie that you would like to teach to students?

After thinking it over, I wondered if that might be a bit too general, so I invited them to look at about 5 more questions, and choose any or all of them. They embraced the group of questions, and between the three of them, they talked for an hour - an hour of gems of wisdom, experience, compassion, insight and caring. I was inspired and grateful to be part of it. And I deeply enjoyed being in the interviewer's chair, rather than being the speaker - I think I felt like Oprah for an hour, and it felt good!
I don't want to give away too much, but I will say that being able to listen in depth to the surgeon who worked for 16 of the 18 hours of Katie's surgery, saved her life, and dealt with each of us with care and compassion, was an experience beyond what I could have hoped for. I will always respect and love that man for what he did for Katie, and for us. He gave us several months of additional time with our precious girl, and he gave her a chance to live without that tumor. He is a light in the world, as is Dr. B & Linda A., who also gave us fabulous words to share with students.

Tuesday brought another trip to the city, just for fun, with my mom and lunch with Laura. Wednesday was laundry, massage therapy, exercise, Costco, and a pub date with my husband. We still haven't been inside of the new Trader Joe's, but that is on my list!
Today, I cooked a pork roast in the crockpot, and had Laura over for brunch (she made delicious nut & chocolate chip pancakes with fruit sauce for us). Laura needs her own cooking show; she is making up all kinds of awesome gluten-free, dairy-free, low-sugar treats! We made a lightning-fast visit to Poulsbo, to run errands at Grounds for Change and Liberty Bay Books. Then Gregg's parents joined us for dinner. What a fun day!
Tomorrow, I will be catching up on Guild business, more laundry, errands, exercise and hosting my parents for dinner.
Saturday is Camp Goodtimes set-up, and moving my in-laws into their new home (assisted living).

Now, it's time for bed. I hope to be able to check in with all of you soon, but it's a very busy time here. Please know that I am thinking of all of my blog peeps and wishing you well, even if I'm not visiting at the moment!