Resilience, Remission, The Precarious Future

img_2238Resilience: The capacity to recover quickly from difficulties; toughness (the dictionary) or “I get knocked down, but I get up again” (Chumbawamba).

When I need a book, it appears. I can’t think of any exceptions. This time, it was Option B: Facing Adversity, Building Resistance And Finding Joy by Sheryl Sandberg and Adam Grant.

So, here is how I felt before the book (read to very end for the turn-around):

img_2489Remission: a peculiar state of being.

Remission is kind of grateful and fearful and mixed up and present and remote. The after-effects of cancer take different forms, like a band of bad elves, dancing through my life leaving footprints on my body and soul.

Yes, in the future, cancer and its draconian management will be viewed like the plague and its medieval cures. But that is not now. However, it is the beginning of then. Yes, I am grateful. Beyond measure. Everyday. Yes, I am aware of the legions that participated in my recovery. Yes, cancer has changed me. Yes, there have been many gifts. They poured through me from the moment I was diagnosed, and they continue.

But cancer also still wants its due, now, in remission. It extracts payment every day. But as a friend commented, “paying is staying” and so I pay the price it asks each day, and sometimes there is nothing left over for anything else. But sometimes there is.

img_2178At the Roche Harbor Mausoleum, I am transfixed by the symbol of the broken pillar. Clearly, this is how death takes most of us, in the midst of what we doing… the column breaks, and that’s the end of your story. But remission has no such representation. We are all partly shattered by life and we all live in precarious but often mysteriously beautiful circumstances. I think the difference is living in remission means you are aware of that. Many people aren’t. And it is not a truth easily expressed.

The future is precarious

But then, life has always been dangerous. I know this much. We do not live in the country we once imagined we did. Our foundations of democracy have been seriously challenged and injured. We are being challenged at a deep level. The person in the White House is a would-be dictator. We don’t want to talk about it. We barely want to know it. It’s all too much.

img_2125The news hurts us but also we are starting to understand how we have grown soft, made cozy with white privilege, and basically just want it all to go away as we pull up the covers and rest in the benefits that are in such danger of being stripped from us. (Yes, I see all the positive actions as well. I am, however, very concerned about our inability to get out of our bubbles).

Meanwhile, climate change approaches. I am reasonably educated in the science but honestly, I can’t really imagine it. The changes throughout the earth and the changes in the ocean are incomprehensible to my animal body sitting here, typing these words in the sweet hygge of my living room.

img_2286What I do know is that I love the things that are even now changing. The trees I adore are in the line of fire, quite literally, of the coming changes. Trees are interesting beings. Their very essence is to stand still, no matter what. They stand outside in the rain and scorching sun, they stand until they break in storms, and they stand until the wildfires that are all over the news surround and burn them down. Trees whisper one strong message to me… stand today. Do your work. Live in community. These silent voices instruct me how to live even as climate change approaches, like smoke on the horizon, with a growing orange glow.

Meanwhile, this day, this moment… learning to imagine it all the way out to what I know is coming is to learn to stand, because as it grows, none of us will be able to get out of the way. It is also a vivid reminder to love this moment with a sweet intensity.

img_2236The Turn-Around: Option B

So, there you have the dark of it. The discouragement and side-effects are real. But. Can’t stay there. Mary Oliver’s eternal question still stands: “What will you do with your one wild and precious life?”

Sandberg and Grant write that resilience is like a muscle, it can be built-up. Life is never perfect, and doesn’t always go according to plan. Sandberg’s husband died, leaving her with two young children. She had to figure out how to live in Option B.

In our own lives, and now on the planet, and in our country, we are always on the brink of the broken column. Building the capacity for resilience is our task.






Radical Remission

IMG_1475Our racing year has rounded the zenith of summer solstice. How amazing it is that we live of this fast spinning planet at all…living our lives and trying to make sense of it all. Meanwhile my life has been rocked by a little book called Radical Remission by Kelly A. Turner, PhD., a researcher and psychotherapist who specializes in integrative oncology (integrative-oncology includes strategies such as nutrition, exercise, stress management and targeted supplements can reduce inflammation and boost immunity, which can reduce the risk of relapse.).  Check out her website with the link here:

Turner researched over a thousand cases of radical remission—people who have defied a serious or even terminal cancer diagnosis with a complete reversal of the disease.

IMG_1355“Most cancer patients say the scariest moment of their journey was the diagnosis, but the second scariest moment was when they went into remission. That’s because most cancer survivors are told while in remission that all there is to do is watch and wait to see if the cancer comes back, which is a terrifying and disempowering thing to hear.” Now instead of watching and waiting, people who are hoping to remain cancer-free can access the power of the nine key factors in this book.”

Stop. Full stop. Total truth being spoken. I read words that reach deep into my battle scarred, PTSD ridden soul. It takes me over a month to read this book. Then I read it again. It swims toward me through the haze of half truths and injury and denial of my past few years. Oh yes, I am in remission. And of all the definitions of remission, Radical Remission has shaken me the most. Because that is EXACTLY what remission is: watching and waiting to see if the cancer comes back.

Radical Remission bookthe 9factors best

Turner found there two groups of people who had been largely ignored in the thousand plus cases in medical journals. The majority of the articles did not mention what the patients thought might have led to their remissions. The second ignored in the researched was the alternative healers. No one had studied how non-Western or alternative healers treat cancer. The doctors had listed all the biochemical changes but had never asked the survivors why they thought they had healed. She is not opposed to conventional cancer treatment and there are no quantitative, randomized trials but she wanted this information to be out into the light of day now because it may take decades for it to make into the medical journals.

This is a story about what we don’t know. It includes something about the body’s ability to heal itself. Life itself is so much more mysterious and bigger than we ever give it credit for.  I can’t tell you you will heal from cancer or keep from getting it. But this book describes a lifestyle that will, at the least, make you more resistant to cancer. I think that’s worth knowing, don’t you? This books tells us stories which have been hidden until Turner found them.


I went through and journaled how I was doing on each factor for my own life. I suggest you do the same. This is the blueprint for the rest of our lives.

Factor #1-Radically Change Your Diet

This is the medicine we take three times a day. Here are the basics:


Don’t get discouraged! If I count all the ways I have eaten incorrectly, they are legion. I grew up surrounded by and encouraged to be addicted to sugar and simple carbs. Dairy, cheese and meat were the foods I ate to be “healthy”. Basically I am amazed I have survived this long! Since I have never succeeded with a long list of don’ts, I made another list for myself of ways to remember to eat well.

  • Try to eat pleasurably.
  • Eat seasonally and locally.
  • Give thanks daily for food and for the ways you’ve made your diet better.
  • Cook more often and have the right foods around.
  • Eat meals instead of snacking.

Factor #2-Take Control of Your Health


Ever taken the time to examine your habits and lifestyle? This opens up chi in your body. Being willing to make changes is a key factor in the healing process. Just the thought of this is very healing. Do everything you can to strengthen your immune system. When speaking to your doctor, be prepared to take on role of annoying patient and ask all the questions you need to ask. You can this. Take notes and keep records. Learn how to research. Become the lead decision maker in your life.Get over the idea that your doctor will guide you toward health. That’s your role.

Factor #3-Follow Your Intuition


Jack looks to Salish Sea for inspiration

The body knows what it needs to heal. Listening to to the body requires discernment. Learn to do the things that allow you to discern.

What do my body mind and soul need in order to get well again? I know. that in spite of my sadness for the world, I need joy and and meditative movement in nature. I know I need to clean up bad habits—exercise, diet, activities. I know I need to really really really practice discerning my business from your business or God’s business. Having gone through the acerbic rigor of cancer treatment, I now have to honor rest and solitude at the center of my life to perceive what comes next, day by day.

Factor #4-Herbs and Supplements

Turner recommends you think of herbs and supplements in this way:

1-Supplements to help you digest your food–digestive enzymes, prebiotics and probiotics. Unfortunately, there is wide array out there and it takes research to find the best, or ask your naturopath.

2-Supplements to detoxify your body. My go-to supplements for this are milk thistle and dandelion. But ask ask your naturopath.

3-Supplements to boost your immune system. I place faith in Beta glucans and elderberry. But ask your naturopath.


While I agree it is better to eat the food to keep us from needing so many supplements, that is easier said than done. So to her list, I add the following:

4-Supplements to help you sleep. Melatonin mixed with passion flower does wonders.

5-Supplements that you know you need to stay off or get off pharmaceuticals. My one little pill I take every morning (Ponatinib) makes all kinds of things high that shouldn’t be elevated. I need help to control blood sugar. I need help to lower ferritin from too many transfusions. Some people need help with inflammation or thyroid or blood pressure. Ask your naturopath.


Factor #5-Release Suppressed Emotions


We had a lot of releasing to do when Jack died.

Because so much of my suppressed emotions have to do with the earth, I need to be proactive with books like Active Hope by Joanna Macy. How do I release trauma when cancer itself is the trauma? I ask myself. Face fear of death or recurrence directly, I answer myself. Fear shuts down my heart and in turn, the immune system.

This leads me to spend time in prayer and communion with God and Nature. I try to remember to practice active stress management and get regular nurturing of some kind–energy or massage treatments. I am learning to let all emotions positive and negative flow through body and learning to let go.

Factor #6-Increase Positive Emotions


Sage in a rare moment of being pensive; Audrey in full throated giggles.

My friends and I forever talking about and seeking Creativity. We all live creative lives and we all like to laugh together. We also love to walk together. On our island, we are always in the realm of beauty and we never ever get tired of it. My friends have passed on the idea of listening to funny/inspiring podcasts while moving, and readily create and pass along the idea of inspiring events.

I love gratitude. I hope the last words I say in this life are thank you because I feel it all the time. If I am in a bad emotional place, I can begin to say thank you for the simple and profound fact of my existence and go on to more and more more moments of gratitude. I once wrote three pages of thank yous to water and that list seemed ridiculously short.

Factor #7-Embrace Social Support


Find ways to get pampering and increase physical touch. This might be a challenge to some. If it is, consider the saving grace of a pet. In our town, we have the awesome greeting of a hug. Lately I have been appreciating this more and allowing it to really connect me to my body and to another person.

Factor #8-Deepen Spiritual Connection


Reflections on the ferry.

I have found that the Way of Jesus is really speaking to me, but then it always has. Going to our local Presbyterian Church is deeply satisfying for me, just to be in that practice with people that don’t necessarily share a political conviction with me, but they do share that practice.

But there are so many ways to do this. Morning yoga or prayer, meditation and journaling are simple but powerful methods. Being in Nature and celebrating the seasons is one of the most spiritual things I know how to do.

Factor #9-Have Strong Reasons for Living


There is not much more to add to this picture. It speaks for itself. But so do the pictures of my friends and my experiences of nature and community, activism and travel. I have a strong sense that we need to answer what is calling us.

So there they are, the nine healing factors. Turner was surprised that there was not one that clearly outweighed the others. But I would say there is a tenth healing factor, and that is commitment, which is defined my dictionary as the state or quality of being dedicated to a cause or activity.

When I read this book on Radical Remission, I was floored by the amount of commitment each person displayed in order to achieve their remission. It is a travesty that the medical establishment does not recognize this. Make this your new job. You can’t go wrong, because every healing factor heals you in the moment and not in the undefined future. It is a way to experience remission without a sense of helplessness. It will make you healthier and happier. It may be the path to prevent cancer from occurring or reoccurring.  And it will be a beautiful new way of living in the world.






















NDY” Stands for “Not Dead Yet”

survivorAt the survivorship clinic I just took I am presented with a nice succinct list of all the chemical agents I was given. That’s handy when I go to the cardiologist in the possible future when the Doxorubicin that entered my body through IV has finally thinned my heart muscle through a process called “caridomyopathy weakness”. These late effects of this common chemo can appear any time for up to 15 years, along with bone thinning, lung scarring and increased risk for secondary cancers.

The nurse practioner reminded me that I had been #34 in a clinical trial. “We’ve learned that some people survive the side effects of getting Car-T-cells and some don’t. Yeah, that means we killed some people with the cure, but they were going to die anyway.”

I appreciated this candor. I already knew it was true from my reading. But no one had said it out loud. “Even though your B-cells are returning,” she continued, “it could be that your T-cells got enough instruction from the Car T-cells so that they now know what to do.”

Sugar-Cookies.3“Since you were at the beginning of the clinical trial,” she went on, “we didn’t have much idea what we were doing. It was like making cookies without a recipe. A pinch of this, a cup of that. So maybe we hit on the right recipe with you.”

(I try this out on my regular oncologist, on the same day of that visit. He snorts. End of conversation.)

At the phlebotomy clinic, busy as always with people piled in all the corners of the waiting room, they have 15 vials waiting to be filled with my blood. Most of them are marked “research”.

IMG_0966“Does that mean we get to see what the research shows?” I ask my oncologist during our visit. Things like the knowing level of inflammation, for example, would be useful. “Or does it just go into the black box of research, without either of us having access to it?”

“Black box,” he replies. End of conversation.

The four regular vials of blood he ordered offer some hope for Dr. Weston, in my ongoing quest to deal with metabolic syndrome. My blood sugar levels are down, a fact that floods me with relief. I may have just hit on the right combination of supplements and diet to fight off the creeping insulin resistance. The elevated liver enzyme levels are down. So I will resume Tumeric, in my own little experiment to see if I can take this beneficial spice without ill effect.


March fills our pond

You know that little notation that says “Always consult your physician before before taking … Fill in the blank . . . any supplement” (or beginning any exercise program)”? That’s just funny. Really funny. Seriously. They will actually think you are crazy for taking just about any supplement.

“Just keep doing what you’ve been doing.” My doctor said as he left the room. I think about the papaya enzyme extract that raised my critically low platelets, and the auryuvedic herb that lowered my blood pressure and the various herbs and supplements that lower dangerously high blood sugar and cholesterol.

I nod. “Okay.”

And I wonder how satisfied he is with this encounter or does he leave as bemused and confused and shortchanged as I do? Remember, I remind myself, that for every patient like you there are 20 others that just want the drugs, and don’t resist or ask questions.

After these visits, I drive home on a busy freeway, thinking these thoughts. Doctors have to act like they know everything because we expect that of them. Your own history and biological/chemical makeup and attitudes and education, outlook on life and life circumstances have everything to do with your chances of survival but doctors have no way to quantify that, and perhaps that’s as it should be. Perhaps it’s best left as the great mystery.


In the world of cancer and cancer treatment, we engage in the deepest conversations about life and death, if we want to, and can allow it.

People will say things like, “anything can happen”, trying to encourage you that a miracle is waiting for you. But that means anything, including getting worse and dying. It is not the fault of the sick person if that’s what happens. It’s not that they didn’t believe hard enough or deserve a miracle. I think the goal is to literally stay open to “Anything can happen”. In that space, miracles can happen. Forgiveness can happen, Faith can happen, Love can be expressed, Memories can be remembered, Lives can be recounted, Gratitude and love can be let loose from a lifetime of holding. Sometimes, the body can be healed. Sometimes the heart of the person witnessing is healed. If only one of those happens, it’s miraculous.

It’s a long journey to go from angry and sad to staying open and holding all these possibilities. People who survive a round with cancer have a combination of the right genetics and the right attitudes (a lot of other right factors–like the right doctor, hospital, insurance an support system).


I call my attitude “NDY” for “Not Dead Yet”. During both cancer treatments, any day when I was NDY, weak but alive, and walked above ground (or, in some cases, crawled), time held all those possibilities. Sometimes all I could do was watch streaming TV in between all the hospital procedures. But even then, I envisioned myself coming back to the Salish Sea and walking on her shores and mountains. Was that positive thinking? Yes, clearly, but I can’t forget the deeply heartbroken young man who was down the hall from me in the whole body radiation room 24 hours a day for a few days. I can’t even imagine where he went in his head for sanctuary. I don’t know if he survived. But his parents sat outside his room everyday. Not talking and not doing much. I know they were praying, unceasingly. For the life of their son, for his soul and for their own souls, and for the cessation of suffering. What was happening here? Surely things were happening in the realm of possibilities between his “no access” room and the hallway where they set up their waiting. Things happened to me, for sure, as I had the privilege to silently observe this. I have to believe some kind of healing happened, though it might not have had the outcome we all wanted to see. I can’t imagine projecting some kind of failure on any of them because they didn’t think positively enough. If I had a prayer about it, or about anyone, including me, in this situation it would be one of compassion and stillness, so that I might be able to be to discern the beauty of their love.


Audrey found meeting Kari and George a very funny experience.









Recovery and Remission, “One Day at a Time”

IMG_0475Recovery and Remission, “One Day at a Time”

I have been musing on the relationship between recovery from substance abuse and remission from cancer. It feels significant that one group walks alongside their addiction, one day at a time, toward sobriety –much like the cancer “survivors” walk alongside their illness—and fear of relapse– toward remission. Call me a survivor if you like. I won’t argue because it is true of all of us on the planet. But those of us who have “survived” a cancer occurrence can feel its steely presence just out of reach of ordinary conversation. The saying and practices of those who walk alongside addiction are powerful truths that don’t shrink from acknowledging the possibility of recurrence while bolstering a person’s grit and courage to face it down everyday.

Recovery themes that I am really appreciating:

One Day at a Time Means Focusing on What You Can Control

One Day at a Time Means Counting the Little Victories

One Day at a Time Means Staying within Yourself

From From

I take it in with gratitude. I trust people who have been knocked down and get up again.

A Year to Live

It’s a practice, not a diagnosis.

“This day, as ordinary and uneventful as it seems…is one of the relatively few you have left. Do something worthy of it. When Death shows up to give you news you didn’t want and see coming, may it interrupt you in the act of really living.” John Pavlovitz


On a day when I had no energy, i drove out to our National Park and encountered this fox. 

I read A Year to Live, by Stephen Levine quite awhile ago, long before all this cancer business. Even gave a talk on it. Now, I look back on that time with a bit of irony. How much I didn’t know, I think. I didn’t know how visceral it was to really do this practice with the distinct possibility that it could be true. I didn’t know how BUSY it would be—in the head and the heart and the mind. A year left to live, unless you are taken over by pain or incalculable fatigue, or nausea so powerful it is your only reality . . . all of which I have had. . .  so I know how miraculous it is to hold that thought without those debilitating elements.  Because a year left to live means so many things it is overwhelming. So, which is more important? To rest when you need it, or soak up every minute of time with your family, to exercise, or to speak your truth to power, or to organize and settle your work legacy (in my case, this has been very important), or to be in nature, or recover and enhance spirituality and faith, or to eat well, or to celebrate and talk with friends and say all the things you need to say, or maybe write that book and fully encourage your creativity to bloom? The answer is all of the above, of course. But I didn’t know how true that was until I had cancer.

Sometimes, I go hard . Too hard. I feel good. I take the exercise class and secretly compete out of the corner of my eye. Then I schedule a walk and we move fast. And by the time I do all the errands and greet all the people my small town requires, I feel suddenly perilously close to exhaustion. Driving home in a low blood sugar fog, images chase each around in my head, as if I almost drowned—and now the lapping water I’d been playing in is rising—and I start to panic. What is it? The answer is short and stark and laughably simple. I’m tired.


Modeling our Christmas elephant pants

Fatigue was something I didn’t mess around with during chemo. It caught me and held me with fangs I couldn’t escape. Yes, I have PTSD about being so drained and weary I couldn’t even rise to level of normal life functions. Don’t worry, I tell myself, it will pass. Still, I come inside with a single minded focus. To recover. Food and drink and rest. I sigh with the pleasure of it: to be in my own home, watching birds out the window, a story at my side, no one to answer to for as long as it takes to convalesce for a few hours—until my body regains its delicate energy once again.


Steve at the Fairy Ring on Skye, Scotland

The following is from a blog I have appreciated.

“In an article by Arthur W. Frank, he suggests that we are living in a ‘remission society,’ where patients are “effectively well but could never be considered cured’’’. In Frank’s ‘remission society,’ the patient is always caught in a void between health and illness.

The Loneliness (and Sometimes Anger) of Cancer’s After Effects

When I go to see my counselor, often the thing that pours out of me is loneliness. People are quick to remind me that “everyone has something”. Of course. I know that. Permit me just a little frustration for all the hours spent with Dr. Google.

The experience of loneliness seems to be one of the unarticulated experiences of such a survivor. I wake up with a sudden feeling of faintness. There is no one to ask. The busy doctors and nurses, in their overwhelmed world, can barely keep up with the demands of their acute patients. Hours go by, keeping company with a symptom that is so elusive. Is it tied to the vomiting episodes I had last week? First order of business is to get lab tests. My slow scrutiny of each value must be nothing like the doctors’ quick perusal. They look for acute warning signs. I am looking for warning patterns.

I know I get arrhythmias. During chemo, my heart suffered mightily enough to be challenged by an effusion which was threatening enough to really get the doctor’s attention when I was in the hospital. But in the steps leading up to admission. That’s what I am trying to prevent.

dragon Is it the powerful drug “dragon” called Ponatinib? The label names many possible heart conditions that it could cause. I try to check off the possibilities, knowing full well that many, possibly including my doctors, would call this behavior Hypochondria. Okay, I say. I understand that you have never been attacked with chemical agents before. You have never had sudden diabetes brought on by prednisone. You have never had to wear a holter monitor for a month because your heart was freaking out from the chemical assault. You have never had to count out immunosuppressants that both threaten and save your life.  I can’t be the ideal patient (quiet and submissive). If it gets bad enough to be acute, they will be there. But until then, I need to participate in everyway I can.

Lastly. Gratitude. The Most Powerful Medicine.

I am grateful for so much I cannot list it all. I am grateful to have this IV line that is right now in my vein pumping IVIG to replace the B-cell that get gobbled up by the Car T-Cells.


“Immune globulin products from human plasma were first used in 1952 to treat immune deficiency. Intravenousimmunoglobulin (IVIG) contains the pooledimmunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors”.

Think about that. A thousand or more donors. Thank you, unknown altruistic peeps! Thank you, quite literally, for my life.


Ancient Oak, Ireland












Homecoming 2017

IMG_E8053“And so,” my friend asked, “was it all you wanted?”

I love questions like that!

IMG_8221Yes. It was. The trip was all I knew I needed. Did it have some downsides? Of course. It did not erase all of the PTSD Memories. Those still come at me like old movies, rich in detail, shadows and light, with a plot I can hardly remember. I find myself opening the door to them, wanting to see the experience of cancer and chemo and transplant and CMV– not to mention relapse and CAR T-cells, with the twin cytokine storms and allow them to exist within my heart.

But for this time, we traveled like we were young, as no one else I know travels, guided by an ambitious nose for beautiful, remote places and a great appetite for real people and serendipity.


We came back with a sinus infection that first plagued me, then Steve. This led me, finally, to antibiotics. So, it was not a soft landing. Glad to be home, to be still—at the same time—stunned by the shortness of the days and the sudden absence of movement. And, this time of year… this is the anniversary of last year’s relapse. I try to measure the vigor of my being against the possibility, maybe even the probability, of my DNA once more twisting into something life threatening. It is nearly impossible.


But the trip, the trip… it was a lot of travel. At times, we thought, this is too much. But then we would get lost in the day and meeting all it had to offer. And it always went beyond our reckoning. The Universe gave us more than we deserved or even asked for. It was (mostly) just the two of us, intensely experiencing each day. The last time that happened, it was during cancer. So, these memories… of the fairie glades and castles, highlands and waterfalls, pubs and cliffs and valleys…these memories now represent our fierce life on this beautiful earth. They do not erase the remembrance of cancer but they crowd it with their own vigorous power; of the two of us, walking on narrow trails and driving on roads scarcely bigger, alive with the breath of wind, washed by rain showers, and lit with the sudden wonder of sun breaks. Yes, it was all we wanted.

Scotland, the magnificent…


Ireland, the hospitable…IMG_9373

Iceland, the austere… IMG_E9624

THANK YOU. YOu gave us joy and beauty, adventure and old friends.


You called me, in the midst of sickness. And I came to you.


A Trip, A Memory, A Dream

IonaPerhaps this photo of us, younger and more innocent, will tell the story of why we have a crazy notion to race the lowering darkness and cold temperatures and rain, traveling into Scotland and Ireland with a 3-day stopover in Iceland on the way back. Yes, we are going. Very soon. In 2009, we traveled to Scotland and Ireland and stood on this rocky knoll on the holy island of Iona, off the Isle of Mull. We had a hankering to return.


Orsmaig Cottage, Isle of Mull

We’d used coins and two side-by-side red telephone booths to thumb through the Accommodations Guide from the Mull Visitors Center on the last day they were open for the season, calling self-catering cottages. Magically, in ways you can only experience while spontaneously traveling, we found a home to stay for a week. The valley around the cottage “Orsmaig” rang with the bellowing of red stags and was studded with waterfalls. It cost us nothing to stay, just a little watching over the place. To this day, I frequently dream of Orsmaig, and the profoundly generous and unlikely gift that was given us by the managers, who had been dreaming of their own trip away, waiting until someone provided the means to do so.

Scan 6

View from Orsmaig Cottage

We were sure of ourselves, and confident we would come back to do it again. When I was at my most fragile and despairing during the hardest bout of chemo, I thought about things I still wanted in my life. Audrey was still but a concept and a prayer for a healthy baby. The one thing that did sustain me, and mightily, was the desire to go back to explore Scotland, to re-visit it one last time and re-discover the landscape of my novel, The Curve of the Moon, AND to re-trace our journeys in Ireland and all those beloved landscapes. I am being true to that promise I made to my body and spirit by taking this trip. We will wander, Shann and Steve style, and soak it in, perhaps literally, rain and all. And in the evenings, which will come earlier and earlier, well– that’s why they made pubs, right?

Scan 11

Burren Dolmens

And Ireland? It is hard to remember how many times we traveled to that fair shore and every time my heart jumped in anticipation as the plane banked over that impossibly green landscape. We plan to stand in the mystery and silence of the Burren, where we can touch Neolithic stone dolmens in the limestone panorama, visit ancient trees in the Kingdom of Kerry, walk the famine road in Connemara and of course—to all those who ask—OF COURSE, we will go back to Killaloe and visit the Seanachaoi —pronounced Shann-o-key— (Irish for Storyteller) Pub.

Scan 8

Our Irish “roots” began in 1996, winning the Seanachaoi Pub

Perhaps all this will unfold as planned. Perhaps not. I have learned a thing or two about things not happening as planned. There will be wonderful moments, and only fair to know that sometimes we will long for home. Sometimes we may have setbacks. I have an existential question before me. My body is not reacting well to the drug, Ponatinib. It did for awhile, but that turned out to be a honeymoon. Now the blood counts are reacting by dropping and indicators of kidney injury are going up. Ultimately, I can’t ask the doctors to make this choice for me. So, I ask Life, do I go, and risk the side effects,? Do I cancel the trip and stay home, saddened that this long desired journey has been put off? But there is no other time. This is the only window. I am in between here and gone, as Mary Chapin Carpenter says in this beautiful song, which has been a part of my soul for many years now. This youtube video is particularly fitting, as the photos describe what Steve and I seek when we wander.

This is a trip to heal our mutual PTSD and our wounded hearts. I am making the choice to go for it, leaving the Ponatinib behind for a few weeks. It is a goal to heal the wounds of the past even if we come to meet the troubles again. It is a goal to remember the freshness of the day from a distant shore and call back the explorer in ourselves. I feel good enough to go. That is a miracle in and of itself.

It will also be a place to rest from the cadence of American news, and gain a little perspective. Today, as I start to finish up my packing for our upcoming trip, the notion of going seems astonishing and nearly preposterous. The radio is full of news of how dangerous the world is. We don’t seek permission; rather, we slip through the cracks of ordinary and cancer life, to go on a truth-finding mission, once again, to see what kind of a world it really is. We intend to meet the best of it. Here’s to the optimism and the faith that we will rest in the beauty even while we revel in the adventure of the journey.

Scan 2

1996, Mariya and Elena with friends in Killaloe

Lastly, this will be our anthem.

When the Great Day Dawns: from the Inuit  

“And I think over again my small adventures
When with the wind I drifted in my kayak
And thought I was in danger

My fears,
Those small ones that seemed so big
For all the vital things
I had to get and to reach

And yet there is only one great thing
The only thing
To live to see the great day that dawns
And the light that fills the world.”

Scan 12




The Nowness of Now


The Nowness of Now

I am trying to hold onto the “nowness of now”, my new favorite phrase. Now I am a cancer survivor with a “so far” bubble over my head. Now I am in the glory of the Indian summer, with its golden sunshine glow and crisp nights. Now I marvel that my granddaughter, Audrey Autumn, has been in this world for a year, and that her namesake, the autumn equinox, has come and gone. Now we are suddenly sliding toward increasing darkness.


Medical PTSD

It has been a long walk away from the scent of hospital, and blood counts that barely sustained life without transfusions. For many months, I have been accompanied by a strange and persistent feeling that I could only call “hyper”. I described this feeling to doctors and nurses, and got only shrugs. Such are walls between the mind, soul and body in the medical world. I know now this was clearly PTSD, but I have only recently recognized my hyper-awareness, hyper-arousal and hyper-vigilance for what they are. Some of being hyper was extraordinary; the profound amazed engagement with a world I almost lost. Most of it was tough; startling easily, becoming exhausted with the world too early in the day, struggling with sleep. My nervous system was overwhelmed but the drive to deny that anything scary had happened fooled me and I had few tools to use. Gradually, I found my way. I needed to have control over the details of my life and that my resilience, something I have regarded as a strength, was weakened.

IMG_7166Re-Building My life

After a meeting with a counselor, I went into the library, and in the way that books leap into your hands when you really need them, I found Waking the Tiger, Healing Trauma by Peter Levine. The tiger is safer sleeping BUT. It has to be awake to heal. And there ARE tools, after the disquiet is named. I am healing from the trauma of cancer, chemo, transplant, relapse, chemo, which prompted anorexia, bone marrow biopsies, chemo injected into my spinal fluid, immunosuppressants, steroid-induced diabetes and muscle wasting, having my immune system killed, many rounds with Cytomegalovirus (CMV) infection, pneumonia(s), too many transfusions which prompted a very close encounter with bone marrow failure, too many hospital stays, almost bleeding out and sepsis, a gram-negative bacterial infection, a heart effusion that took months to resolve, being flown off island, chemo, a month-long bout with intense abdominal cramping, post- transplant depression, post-transplant metabolic syndrome, and CAR T-cells, which prompted neurotoxicity, and two cytokine storms.  Yes, all this. It is hard to say it without sounding like I am whining. It is, instead, a long exhalation, laying down all that happened on the holy ground.  I have come to believe this is part of how I heal from PTSD, to stop denying that “anything” happened. And I want to heal from the effects of “dissociation”, withdrawing crab-like into my shell. My body has been injected with so many foreign substances, even other people’s blood — and my daughter’s immune system, that it has had to re-build itself from the inside out. So, when people ask me what I am up to these days… I am tempted to simply quote these insightful words from the dictionary: “Re-build: to build (something) again after it has been damaged or destroyed.” I am re-building.

IMG_7318The Remission Society

Author and cancer survivor Arthur Frank (At The Will of the Body) describes “the remission society”. Cancer is no longer the swift killer it used to be, at least not for everyone. But you are never cured. You are “in remission” which carries a clear threat of relapse. The “sick you” remains in the background, never really fading. Caregivers go through this too, and so does anyone who has battled a long difficult illness that took time away from ordinary life.

I am not afraid of death, not any more than anyone, I would say. But I AM aware that it WILL come, and I will have to leave this beloved place. According to a 2015 Huffington Post article, 14.5 million Americans live in “some state of remission.” They live in that murky zone between illness and health. They no longer subscribe to widely promoted notion that death and illness will not come if you just “live right”.

IMG_7320My deal with the dangerous drug that might save me…

I am taking the drug, Ponatinib everyday. The first two weeks, I had a lot of stomach pain. Then it settled and I am just living with it now like you might live with an unpredictable shelter dog. So far, my blood counts are holding their own. The drug silently plays into the nasty column of metabolism changes since transplant so I fight back with my own exhaustive research to find the right herbs and supplements to balance the the wrong things from taking over. Every step I take on this “alternative” path of medicine further distances me from conversation with the medical world. On the other hand, every step into pharmaceuticals and tests and infusions are hard for anyone in the “natural medicine” world to accept. I know a lot, not enough, and too much. It is a lonely road, but one I have gotten used to walking on. I am what I am, like Popeye.

IMG_7268Becoming Earth

Becoming Earth by Eva Saulitis reminds me that the narrative of cancer is a story of life on this fragile, dangerous and beautiful earth. We live life on this planet, meeting its challenges in our own ways. I think all of it works, even the denial and the frenetic desire to be healthy and happy and young. Now I am more interested in the solemn reflection, the grace and gratitude; the giddy astonishment of living another day.









You Got to Walk That Lonesome Valley


Maria’s sculpture

“Looks like your body rejected the T-cells”

My oncologist knew this because a few B-cells had come back. The “miraculous” CAR T-cells eat the body’s normal essential B-cells as well as leukemic cells. If B-cells are coming back, that means the educated T-cells are no longer present in my body. Which leaves me open to relapse. It is possible that they did their all the work of destroying leukemic cells and then disappeared. But no one knows.


Drumming with Audrey

“And my hunch is we need to assume the cancer could come back.” My typically unsmiling doctor delivered this news in his typical way. Two state of the art treatments and they both failed, I thought. Two treatments where I was surrounded by “the team” of doctors and treatments and nurses. This is not to speak badly about my hard-working oncologist, the one here in Friday Harbor, and the one at SCCA. But plainly speaking, the “team” approach sucks. I feel like a student who flunked out of school. You get the report, delivered by your oncologist, that the Tcells or transplant failed, but the team that was so much a part of your life simply vanishes without a word.


Disposing of my old drugs

There will be no second transplant (too hard on the bone marrow and body in general). And no second infusion of CAR Tcells (wouldn’t work). More treatments are coming into the realm through immunotherapy. But not until late fall. The SCCA doctor (an ALL specialist) was worried enough to ask me to take ponatinib again.

Um yeah, you probably don’t remember my post about that drug, before CAR Tcells. Ponatinib’s (trade name Iclusig) a “tyrosine kinase inhibitor”. The latest generation of “nibs” that were a breakthrough for Acute Lymphatic Leukemia. Full of side effects so strong that people have died or had lasting major effects. One of them is to suppress the bone marrow. My bone marrow that was so injured that it took months for it to be able to produce platelets and red and white blood cells again. I am just now mostly normal.


The Methow Valley

So, even though my August BCR-ABL test (tests for presence of leukemia) was negative (deep relieved breath), he still wants me to go on Ponatinib as a prophylactic or preventive medication. Deal with the dangerous side effects or open the door for cancer to come back? I chewed on this for a long time, haunted by the choice. The bottle sat with my supplements as I searched for the courage to take it.

The Turn Around

In fiction, and in song, you need a “turn around”, especially when the story is leading in a difficult direction. I was worried about what I was telling my body. So I talked with my therapist who is a cancer survivor from stage 4-breast cancer. She is also taking a tough drug and will be on it indefinitely. And I was right to be worried about how I talked to my body, she told me. Together, we worked out a strategy to call Ponatinib a “healing medicine” instead of a “dangerous drug”.


Singing secrets to Audrey

She also reminded me about “individuation”; That Jungian concept that distinguishes you from everybody else. My first oncologist always called me “sturdy”, and I did see how I was different from other people in my response to everything from chemo to the transplant. In some ways, I was more fragile. But in many ways, I was stronger. My body has had the benefit of so much Salish Sea oxygen, wilderness, exercise, wild animals and landscapes— and always, the transcendence of trees. I am not sure where or how I learned to look and listen so intently at the beautiful world, but I always have.


Madrona leaf fall

I draw great strength from the simplest of things: roadside weeds, the sound of leaves falling, water of any kind. Because they are simple, I always have them in abundance. And I have this powerful family thing, this love and devotion to each other. I see this as a gift from Steve’s side of the marriage, and I am forever grateful for it. Both of us are natural community builders, and are surrounded by friends. We also connect to strangers, and that has been a pure blessing when we needed it. I am appreciative of my ability to connect through the internet, as well and through my imagination to stories of all kinds, so that I have not been as isolated as I should have been. Individuation. The unique me. A wonderful word. This now speaks to me strongly because it liberates me from fearing what happened to “most or everyone”.


The Beauty of Life

Maybe I just want to heal PTSD before cancer knocks at the door again. I just want the hours to watch the granddaughter shout at the CD Player while making dancing movements until I turn it on for her. When she danced, she made hand motions like I do when we are dancing in the kitchen. I want her to remember me. While “Forest Bathing” I stand in awe of trees I have never seen before, though I passed them for years, walking and talking with friends. The quality of light has already shifted to autumn. The tastes of summer are phenomenal. I want more time like that, please. I am already in that place where people think “why did I spend so much time working or worrying?”

shann false bay

Low tide on False Bay

You Got to Walk That Lonesome Valley

A friend of mine who recently returned from an Old Timey Song Festival spontaneously sang this as we explored an awesome low tide. She was appreciative of the wisdom in these old songs. “And sometimes, she said, “you DO have to walk that lonesome valley.” This struck me as one of the truest things I ever heard. We all do walk there, in between the extraordinary flashes of beauty and connectedness. I have just been lucky, in this world, to have had so much radiance all around the winding path.

shann and steve eclipse

We LOVED the eclipse



From Cytokine Storm to Complete Remission


cytokine strom

I finally have made it to the page. Writing about this meant I had to face what happened to me. At some deep level, I wasn’t ready. I am recognizing that through this last chapter, I have become a different creature. The good news is that I am in complete remission, though for how long no one knows. The rest of the story is that I am something new on this earth, a GMO human after a therapy that has barely made it out of breaking news, living an aftermath that no one has been trained in. The articles that have made it to the Internet, still breathless with excitement over the potential, have no mention of the time after the first critical few weeks. Of course they don’t. It is the fairytale after the princess kisses the frog and turns him into a prince. What happens after that? They lived happily ever after and that is the end of the story. And so it goes for my Car t-cells and me. How long or how happily have yet to play out.

Since the CAR T-Cell therapy is so new, I will use another analogy to describe what it feels like. Remember A Stranger in a Strange Land? I read Robert Heinlein’s book, about a human raised as Mars trying to adjust to the strange world of Earth, in high school. This title comes to me as I explore the new continent of my life, as a voyager, without a real goal or a guide.

stranger in a strange landAfter transplant, I arrived at life-post-cancer with issues no one was interested in: things like metabolic syndrome, for example, or iron overload (from too many transfusions) concurrent with anemia. I found scientific papers clearly stating that insulin resistance (a factor of metabolic syndrome) was a likely result of a stem cell transplant, but there was little help to be found. Once the urgency of a menacing cancer was over, the doctors lost the intense interest in “my case” and the relationship we’d shared during the “battle” fell away. I don’t know what I expected, but not the utter lack of preparation, or even a feigned interest. That threw me back to GPs and naturopaths who had no expertise in the complexities in my health care after cancer. No wonder I commented to a local massage therapist treating the tense muscles in my forearms and the hitch in my back—“those are my research muscles”. So many isolated searches, one after another, trying to find the keys to bringing back my blood counts or health in general. Commonly held community or natural concepts about raising immunity could backfire in the case of CAR T-Cells, where the trained T-cells are going after cancer cells, but also attack B-cells.

But I’ve gotten ahead of the story. Here, as briefly as I can, is what happened to prior to coming back to the island. The “educated” T-cells were infused back into me on March 9, after three days of two types of chemo: cytoxan and the sometimes lethal fluderabine. I say that so casually, yet I am still recovering from their toxic load. The infusion itself was fast and uneventful. The very next day, however, I got hit by a cytokine storm. A little bit of information is important here. Cytokines are a hormone that signal T-cells to fight infection. They also stimulate the cells to produce more cytokines. But when the reaction becomes uncontrolled, too many immune cells are activated. This is called cytokine release syndrome. Then the healthy immune system can go into what’s called a “cytokine storm” — which can be fatal, and is, in many infectious diseases. The big flu epidemics and many other catastrophic infections involve this stupendous assault on the body.

Ilustration of a cytotoxic T cell (purple), also called a CD8 T or killer T cell, investing a tumor cell.

T-Cell goes after cancer cell. 

Back to my cytokine storm. On Day 1 following the T-cell infusion, I was hospitalized with high fever, very low blood pressure and confusion. A few days later, on March 13, I was released. Two days later, I fell into the bathtub in our borrowed Seattle home. Yes, fell, fully clothed, into the bathtub. And back into the hospital I went, with the same symptoms. Only this time, because of the fall, they insisted on doing two CT scans and an MRI to rule out concussion. Even now, I have vague dream-like memories of these hospital stays. Needless to say, I didn’t die — though others in the same situation have. We spent the next 12 days in Seattle recovering, moved twice, and took many beautiful walks in the spring flowering neighborhoods.

After another excruciating bone marrow biopsy, we were released back to the island. We went to two memorial services. I was shaky and shy of greeting so many friends after all that time in isolation. Still it was sweet to be home, back to baby Audrey and the daughters. When we prepared to go back to Seattle to hear the results of the bone marrow biopsy, we did so confidently; sure we would return to the island by the next day. Nope. The doctors told us that I was in complete remission, but that my bone marrow had 10 % “cellularity” (normal person has 30-40% and it’s what measures the bone marrow’s ability to make new blood cells), and that I had 160 replications of my old friend Cytomegalovirus (CMV). That’s not high, I’ve had way worse. Because CMV COULD suppress blood counts, which were low enough to require blood or platelet transfusions every few days… they wanted me to check into the hospital for 2 week program of Foscarnet.

This was the drug that nearly gave me irreversible kidney failure the last time they used it. I fought the decision for two weeks after as I went through two four-to-five hour infusions a day for a week in the hospital, followed by a week with the AM infusion at the SCCA and the PM infusion at home, testing our ability to handle IV fluids while exhausted. I can barely describe this Foscarnet chapter. I argued with the doctors everyday. I didn’t agree with their decision, and they wanted to do it by the textbook. I liked my doctors. They are young and smart. But I was enraged at this directive. In the end, I submitted, and my kidneys did not “go under”, though they came up to the brink. I was already aware that my reptile brain was out of the cage and ready to fight or flee. It grew to be a Komodo Dragon during this time.

IMG_0355We came home on April 19, shell-shocked, exhausted and traumatized. Time has been a healer. We are better now. My bone marrow has taken longer to recover. For awhile, it looked like it might be bone marrow failure. That’s when the bone marrow has been so injured by chemo that it just lays down and essentially dies. No more new red or white blood cells or platelets in the body unless given through transfusion. And you can’t do that long term. It seems the marrow is maybe starting to wake up now, though it has been nip and tuck for a long six weeks of waiting. I’ve had daily visits to our local hospital for blood tests and a total of 9 red blood cell and 6 platelet transfusions. But at least Steve can go back his normal activities and we both can experience the joy of being home. I am, perhaps permanently, in the new normal. We will take it. I am very happy to be alive.

For more information on cytokines, check out more this at:

This article below is well worth reading, though I found it profoundly frightening to read someone else’s experience with CAR T-cells.


My speech for the Friday Harbor Women’s March

This is the speech for the Friday Harbor Women’s March I wrote in the hospital my first couple of days in Seattle. I was getting chemo, but it hadn’t really hit yet.

If you would rather hear this than read it, here is the link.

This was the introduction:

“I am standing in support with all my Salish Sea Protectors, lovers of the islands, women and men of my community! Thank you for representing me here, along with the future of our planet.”

The recording opens in the middle of the first paragraph. Here it is, so it makes sense to you: 

“The last ten weeks have left us without illusions. It has been painful, but the gift is that we have woken up. At Standing Rock, there came a time when they realized that no one was going to save them. It’s just us, they reported. And that’s enough. This is a time to remember: We ARE the ones we have been waiting for.”

(Now if you go to the recording, it will pick up from there.)

Women’s March, Friday Harbor, January 21, 2017

Shann Weston’s speech

Read by and collaborated with Kari Koski

The last ten weeks have left us without illusions. It has been painful, but the gift is that we have woken up. At Standing Rock, there came a time when they realized that no one was going to save them. It’s just us, they reported. And that’s enough. This is a time to remember: We ARE the ones we have been waiting for.

It is good that we can draw energy and strength from native people, who are rising all over the world. The simple and profound message that “water is life” is the exact opposite of the message that we only get ahead by extraction of the earth’s resources and not caring what we destroy in the process.

From the Hopi Nation, an Elder speaks:

“You have been telling the people that this is the Eleventh Hour, now you must go back and tell the people that this is the Hour.  And there are things to be considered.

  • “Where are you living?

We live together on islands in the center of the magnificent Salish Sea, our beloved home.

  • What are you doing?

What are you doing to protect your precious home?

  • What are your relationships?
  • Are you in right relation?

The time for the lone wolf is gone, he tells us. See who is there with you and celebrate.

  • Where is your water?

Fresh water, saltwater, ground water, rainwater, tears, blood equals life.

  • Know your garden.

Touch the land with loving hands. Be in service to the garden of island. Support local organic agriculture.

  • It is time to speak your Truth.

“Speak your mind even if your voice shakes.” Maggie Kuhn penned this fine quote. She did not take up activism until she was “retired’, founding the Gray Panthers at age 65. The best age for activism is your age. We are strongest when we are intergenerational.

  • Create your community.

Here we are, gathered and powerful. Don’t go back to sleep.

  • Be good to each other.

And find ways to step outside your bubble.

  • Do not look outside yourself for the leader.

Be willing also not to always be a leader. We need to move together like flying geese, sharing leadership as the light shines on our skills.

Undeniably, we have entered troubled waters. We can learn a lot from Resistance and Underground movements. In every occupied country, people use a variety of means to fight back authoritarian and violent regimes, visibly and invisibly. Take the time to learn about them. It’s very inspiring to be reminded how people fight to be free.

As a friend recently calculated, there are 1,461 days in a 4-year presidential term. This is a call for 1,461 days of action, visible and invisible, that support our democracy. This is our new normal- we have to redefine politics as daily engagement in actions that uphold our institutions and laws protecting our freedoms and rights, including the rights to have equality, justice, clean air, clean water, and a sustainable future free from fossil fuel dependency.

Our Declaration of Independence reminds us that:

‘’these truths are self-evident, that all Persons are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness. That to secure these rights, Governments are instituted among The People, deriving their just powers from the consent of the governed.”

The People means US. Government derives powers from US. This is a call for our constant engagement to either give or withhold our consent.

Let us not use the words like struggle and fear. Feel the grief but empower yourself with action. We stand up because water is life. Air is life. Earth is life. We stand up for our homes and our families and our place out of love. We stand up for our animal and tree nations and all human nations out of love. It is a celebration because we work with others. We stand up because human rights, strong participation and support for a free press, are essential for democracy. Have an eagle eye for what’s happening, and take action everyday, make the phone calls and write the letters, get involved with politics, run for local office, support the organizations that defend human rights and environmental protections. Create your own activism. Stretch out your arms. It is time to work together.

We are meant for these times.

What are YOU doing for the Revolution?