With the original diagnosis and each of my (two) relapses, I discovered a hidden path … “a way out of no way” (old saying quoted by activist Grace Lee Boggs). Today, I am busier living than recording the trauma of cancer. I have been in official remission since treatments of Blincyto in late 2019 and pre-pandemic 2020. I walk upon it gingerly, careful not to fall through thin ice. I have the deepest of gratitude for the treatments and the remarkable doctors/researchers/nurses I have known.
Nine Years Ago
February 22 is the 9th anniversary of the day I was diagnosed with Acute Lymphoblastic Leukemia, complete with the ominous “Philadelphia Syndrome”. It is a date that both amazes and appalls me.
I literally don’t know whether to celebrate it or try to forget about it. Why celebrate? Because it’s a freakin’ miracle that I am alive, and a marvel of modern science, for sure. There is risk in provoking the trauma of the remembrance. I know that. But there is also honor.
And something else … the reason it should not be forgotten … call it genes, or angels, Spirit, or prayer. Something wanted to live. Resolve? Did an Ancient Heritage call on forces that can’t even be named? I don’t have the words for it.
The days pass in a way that startles me now and probably always will until the day I die. The world stage is tumultuous. My small life, along with everyone else’s, flows in a wild river of a virus that won’t go away, an embattled Earth, and finger-biting insecurity over war and shifting finances.
Without a doubt, the biggest 2021 event was was Elena’s and Alex’s wedding. Take some dear friends, mix them in with beloved family and magic happens. The setting was beyond beautiful. Elena was in the cutest barely-noticeable stage of showing “Little Mister Something”. (due March 2022). The day was rainy, but this detail is not the main thing anyone will remember, although it did make us scramble. It was a sweet and intimate and lovely event, with members of Alex’s family we had never met—and old friends of our whole family.
October 2021 was a stormy, rainy month, with the first of two “Bomb Cyclones” of this year. Steve was flown off island after weeks of feeling worse and worse with a severe pain that turned out to be his failing gallbladder. He goes on now without it, with scarcely a misstep, making us both wonder why we even have gallbladders.
On December 19, I woke up with a scary situation called Bells Palsy. OMG. My world changed after that.
I cancelled the birthday party I had planned. My face was completely paralyzed on the right side. I couldn’t blink, much less smile. Then it snowed like it meant it on Christmas night. We stayed home for days; me locked in a nightmare of Bells Palsy.
Unmoored From Time
Thus, I entered the New Year of 2022. I could barely remember what year it was, or common words. Though there was every reason not to, I undertook to recall my Cancer History; the original “Fall from the World” (Leukemia), which happened 9 years ago.
While my body battled to get healthy from the Bells Palsy, I wrote about the dread and pain of cancer, but also the miracle of grandkids and two daughters who bought land and made homes here, on our island. I remembered two relapses that crept up on me like hungry predators, but also that Steve and I traveled once again to places that made us tremble from the beauty of it all. I remembered cruel treatments, but also a new puppy who joined our family and brought much joy to us. My life continued to teeter just above the jaws that snapped for them, and I prayed unabashedly for more time to be alive.
So, it seems to me this is a time to celebrate that I did NOT die any of those many times when the possibility of it was so very real. I decide to assume, from the evidence of my life, that the world has need of me still, and I have work to continue.
I will continue to put this request and desire into the Sacred Mystery. I want to be grandma and mama and wife/partner and friend – for more years to come. I want health. But most of all, I want to continue to have the deep privilege of witnessing this beautiful Earth. I want to be worthy of the miracle of Life.
Teetering is the word I settle on, after sampling lockdown, pandemic, chaos, caste, remission, relapse. Teetering feels like the right word to describe my cancer journey— balancing on a tight rope, but also the drama of larger proportions in our country and in the world. In September, all we could think about was the elections. We thought that would have a resolution in November, but we were wrong. Instead, we woke up to the disturbing split reality of our country, always there, but now in plain view.
The Practice that Sustained Me
While the country went into full chaos, with a disputed election that could easily threaten to rupture my focus on healing, I turned off the news and devoted every early morning to meditation. I focused on coexisting with my “dragon” drug, Ponatinib. As we moved into November, I added a full spectrum light. With my cell phone providing the guiding meditation, I began a practice to lead me back to center through the turmoil in my heart about the state of our nation. This simple training meant that I saw many dawn sky, where black night turned to dark cobalt, then to a mesmerizing indigo hue that on clear mornings, contained the jewels of Venus and the moon in its phases.
The Family Juggling Team
Meanwhile, our family rallied to the various forms of lockdown, with rules that seemed to change every few weeks, celebrating birthdays and holidays outside. Christmas had half of our family on the porch outside, next to the dining room window where we sat with the other half, inside—using our cellphones on speaker to converse. Mariya juggled a “bubble” of moms and toddlers that went in and out of quarantine. Elena navigated the highwire act of trying to keep her parents safe while teaching in person. Steve and I hosted several outdoor happy hours until the cold weather finally overtook our desire to do so, and we surrendered to an indoor world that primarily featured just the two of us.
I knew that the pandemic was unjust in the worst way imaginable, with the poor and unlucky and subordinate caste receiving the brunt of it. We had nothing to complain about in our quiet, cozy home. Though grateful to my bones, I felt and grieved the loss of normal and the growing insanity of our country.
I gather my courage from the Americans who stood for hours in voting lines, masked and six feet apart, without amenities of any kind, to change the destiny of our teetering nation. And I gather determination from those who worked so hard to shift the fate of the future. As we moved into the new year, we saw things I don’t need to repeat here, evidence of an infectious madness. But the teetering line held, and leadership changed and, at least for now, surmounted the violent specter of White Supremacy.
Cancer Trauma is Ongoing
We have reached the quickening of nature, known in Celtic realms as Imbolc. The light has changed so completely, becoming bright and illuminating the blooms and buds that are starting to emerge. I have to admit my own trauma after the last four years, and especially after 2020. I notice I have a reluctance to be out in the world that I have never experienced before. It is not fear. I think it’s just that my world became smaller but richer. I had time to write. We made changes to our home, so it became cozier. I went over my big past life in so many ways, boggled by its hustle and bustle, and not eager to do that again with what time I have left. And there are times I just need to be still. I am trying to let myself disappear when I need to, and I need to do this often. There is so much to take in. The physic cost of grasping where our country is right now is huge. There is stubborn hopefulness that the change might hold and be for the best. But I don’t know that for certain, so I try to strengthen what I have control of.
These things sustain me: Family. Friends. Community. Nature. Beauty. Celebrating the seasons and swinging grandchildren, smiling as they gleefully jump in puddles and ask questions about crows. Listening to the trials and victories of those around me as we move about, always outdoors. The stamp of my long time with leukemia is imprinted deeply in my heart and body, but I bear it, for what, indeed, is the alternative? As I have since I was young, I do the only thing that makes sense, — walking—now taking the place of other travels, healing my heart and body with beauty and the rhythm of feet touching the earth.
Here is where I am today. A passenger on Planet Earth, with cancer always on the horizon, during a worldwide plague, thankful for the rain that settled the smoke of so many homes and lives, with the most contentious election year playing out. I am grounded by the action of my legs roaming the land, and by the beauty that surrounds me.
It took two bone marrow biopsies and two specialized blood test (BCR-ABL) this summer to answer the alarm that leukemia was coming back. The first showed a blood test of 0.05%. This is a number you can’t feel in your body yet, but it is enough to take action. I have gone one year without the threat. Now it is back. I don’t have a word to describe the sensation in my body at this news. I suppose disassociation is the closest. This unpleasant psychological effect is meant to protect me, I know that, and it does do that. But I have to guard against it taking over my life, so that I can’t feel gratitude, love, or fun.
The doctor put me on the kinase inhibitor, Ponatinib. I first met Ponatinib in 2017. It is not a relationship I wanted to continue. For a week, the pill bottle sat in a little altar with two rocks with a word painted on them: “gratitude” and “courage”. This, together with a perfect apple from our little orchard, was meant to give my psyche a spark of positive energy about taking this difficult drug; trying hard to convince my body that this drug could be a magical cure. But the side effects came, hard, with sharp pain in the front and back of my midsection, diagnosed as pancreatitis. Choose between a healthy pancreas and incoming leukemia! I stopped the pills and got relief, and managed to find the courage to start again, and miraculously, it did not provoke pancreatitis the second time around. More miraculously, on the second test, my test came back negative for cancer. Even this news, I hear with a touch of disassociation. I have heard the words “you are in deep remission” before.
I think of leukemia as just below the surface of my everyday life. It very much wants to push up over the surface. I can—perhaps—keep it at bay with this drug, and a handful of denial, and an open palm of gratitude. I am treading my way through treacherous waters in my little boat of life, navigating the storms, hoping there are no holes in the hull and the waves are not large enough to overturn me.
The Awakening of the Black Lives Matter Movement is still exploding inside my soul. Podcasts bring Black voices into my kitchen and living room, conversations that have me bleakly observing the footprints of racism throughout our society. Voices that break my heart, re-learning our real history.
I started writing a Plague Diary and kept in going on Facebook for many weeks. I take a few excerpts from it now, just to capture the rawness of the time.
March 2: “My husband gets his ankle re-built. We look back on that timing and shake our heads; how just-in-the-nick-of -time it was, and how everyone in Washington seemed to go into lockdown with him during his necessary order to stay home and heal.”
March 8-14: “Suddenly, coronavirus is the major topic of conversation. Restaurants and bars start closing quickly; that saucy server and fabulous cook bouncing off into the unknown. We are in the CVT (coronavirus time).
April 5-11: “The “Stay At Home” rule for Washington has been in effect since March 24. San Juan County Health Office issues a directive to suspend all non-essential travel to and from the Islands and close all lodgings to vacationers.”
April 12-18: “My husband cuts my hair short. It seems fitting to look different.”
April 19-25: “26 million people have filed for unemployment. The economy is in a medically induced coma. The reality of a long time in coronavirus time sets in. Some days I carry on; others, I drift in sadness for me and for the world. We are in the same sea, but not in the same boat. All the ways that White and Privilege go together are becoming exposed like rocks under a torrent of water. Outside, birds flit against a psychedelic green, chasing insects, gathering nest materials, singing—dressed in their spring finery.”
April 26-May 2: “The news is full of stories of people drowning under the sinking Economy. Restaurants, retailers, risk, safety. Climate change, the election and voter suppression, food security . . . slide along on their own dismal trajectory as we focus on each day of the Virus. Are we going through a portal to a better future? It’s possible. Outside my window, beauty explodes, calling me for a walk.”
May 3-9: “On the eerie quiet streets of Friday Harbor, most stores are shuttered, some restaurants offer take out. There is an atmosphere of miasma hanging over us, despite good spirits or good fortunes.”
May 10-16 “Everyone must stay at home as much as possible. Businesses must re-open. The whole world struggles with this double mandate. Meanwhile, this country is being torn into two camps. There are days that seem almost normal—gardening and walking– and others that feel endless with too many trips to the food pantry. We are riding on the wings of Spring, her energy and birds, her green and energy.”
May 17-23 “Hot spots show up like the opening credits in Game of Thrones. Climate change plus coronavirus. Sun and rain blessedly fall on our islands.”
May 18-31 “Suddenly it is no longer the plague itself but violence and inequity that grab the headlines. George Floyd died on May 25 with a policeman kneeling on his neck. His last words were “I can’t breathe.” The Nation watched this. Black Americans dying at twice the rate of white.”
June 1-6 “Our county moves to Phase 2 re-opening. Hundreds lie down the length of the Burnside Bridge in Portland. Hundreds march everywhere. The president comes out of a bunkered White House to hold an upside-down Bible in front of the Church of the Presidents. Peaceful protestors are teargassed to make way for his passage; the church responds with outrage. Images of military in the capital with no ID stunningly resemble the Brownshirts of WWII. The Nation reels in a new dialogue full of fury, and for a while, no one talks about the virus. In Friday Harbor, on June On June 5, @700 masked people of all ages attend the Black Lives Matter march. Nationwide, the anger, which has been building for years, explodes.”
June 7-14 “The news is so full, going in all directions, impossible to track it all. People still fill the streets in the thousands, protesting. Black Lives Matter marches spring up in many countries around the world.”
June 29-July 5 “We are banned from Canada and from most of Europe. Coronavirus infections across the United States have passed 2.5 million.
July 6-12 “On our little island, tourists fill the streets in a place that feels safe to them. Islanders have many reactions to this, all over the spectrum. At home, our gardens and homes have never received so much attention, and our island walks continue in radiant beauty. Despite orders for nonessential travel only, the trails are crowded with people I have never seen before. We don coats and continue with physically distanced social gatherings outside.”
July 13-19 “I won’t quote numbers today. Instead, I will say the thing I think at night, when I can’t sleep. We have to go to walk straight into the reality of our times. Give us “good trouble” to get into– and lead us with courage to do the right thing. Where will this leadership will come from? Just look down at your own hands. There is the strange beauty of quarantine, and it allows us to think things we have not before, in the rush to do everything. But. The mask debate has seriously made me wonder if humans are capable of going beyond their sense of entitlement to look for the best answers for community. Black Lives Matter but the starkly beautiful awakening in that statement is losing its power in the ongoing violent fracas between protestors, anarchists, mercenaries and paramilitary federal agents. Truth is hard to find. The election feels so threatened and the work so monumental before and after, that the question “are we going to be Okay?” cannot be answered. But then. We were never okay, really. We were the Wizard of Oz, all bluster and color—a little man with props. All I know is that Covid, and Awakening to our country’s racism, alongside an arrogantly willful administration with no plan other than to control our nation, land us in an unknown territory, a literal wilderness. Nowhere to go but our own homes. Nowhere to stand but in our own hearts. Nowhere to be but in the stark reality of our times, unfurling the truth instead of a flag, leaving fear wrapped in its own chains.
July 20-26. “I am involuntarily building heart walls to keep from feeling the pain of what is happening. The rapid fire, never-ending news has us turning off and turning inward. There is a feeling and evidence that something trending toward civil war is in the air.”
July 27-August 9 “Krista Tippett, of On Being, says we have “a world to re-make”. Little by little, we are reckoning into a new authenticity, perhaps into the truth that was always there. Apocalypse is what it feels like, but in the original Greek, that word does not just mean cataclysm. It refers to an uncovering. The question, “what are we uncovering”? quivers in my heart. We have embedded brutality, and for that matter, stupidity –so we didn’t see it, and now it is in plain view. Some of us, me included, can’t look away now. We are grateful for our homes more than ever—but we know others are losing their homes. We are out of lockdown, but the bullets are still zinging. Krista Tippett says we have to nurture joy, along with what is hard. I see that this a practice many of us are engaging in. Our gardens and art testify to it. Our walks and time in nature testify to it.”
1st of September, 2020
I am trading in “hope” for “inspiration”, as this feels less passive and more manifested in the world by people who face the beast with unshakeable courage and resolve. I am inspired by people who protect other people and nature. I am inspired more than ever now by the activists of all ages who are stubbornly fighting for a world they believe in; and by the naturalists who keep showing us how beautiful and amazing the earth is; and by the Artists and Growers and Makers, who sing, dance, write, paint, act, grow and create in so many ways. I am inspired by the people I already know will cross the great stormy oceans set before them to vote, no matter the outcome. I will commit to defend their right to do so.”
It feels like the world is running in all directions. Still, as May Erlewine sings:
“I feel the sorrow and I feel the pain…
And I will be grateful at the end of the day
I’m going to walk, gonna walk it myself
Through the storms in my body, through the high-water hills
We thought Jimmy Carter’s wonder drug, Keytruda, could be a miracle for me. At first, it seemed like it had vanquished leukemia. But cancer is sneaky and it hides. After the second infusion, Steve and I were told a few leukemia cells had re-emerged. Given cancer’s remarkable to replicate, it would soon overtake my sense of good health. They took me off Keytruda.
Autoimmune Reaction: A Tornado of Pain
Keytruda stays in your body a long time. So you can have a delayed reaction, weeks after an infusion. Now, with the Virus paying havoc with the whole planet, we are learning more about the immune system. Stimulated too much, it can gain too much power in the body and attack.
My immune system went to war. Starting with a burning sensation in my feet, a tornado of burning nerve pain, like a cross between shingles and bee stings, traveled up my body. It stopped, thankfully, short of my face. I had gone into a delayed autoimmune reaction to Keytruda and it took a lot of the powerful steroid, Prednisone, to stop it. All that miserable time, the cancer grew, unchecked.
(Immunotherapy is amazing but it does have side effects.)
Finally, the autoimmune tornado subsided under the weight of Prednisone. In September, I entered the hospital for a new treatment, not knowing what to expect. In one month, the cancer in my blood had gone from under 1 % to 25%. That’s the way leukemia grows!
Meet Blincyto and Neurotoxicity in The Hospital
Blincyto (blinatumomab) is another immunotherapy drug, targeted for leukemia and known for neurotoxicity side effects on initial hookup. I went in to the UW Hospital on a golden September day, with a plan to stay just a few days. On the second day after the infusion, I started losing the ability to easily speak and walk. Can you say the date, the year, where you are? Over and over again, I was asked. When your brain is inflamed, you (may) know the answer but you can’t say. It’s like a stroke, I’m told. But it comes from inflammation, the body’s reaction to immunotherapy. I couldn’t get up and walk either. They alarmed my bed so I couldn’t sneak off of it, much less go for a walk in the halls.
This was a time like being lost in in a re-circulating nightmare, the ones when you pack endlessly and cannot seem to ever make it to the train. What should have been a few days lengthened into nine.
Will and Wyatt visit me
A Long Routine with a 24 Hour IV
After that, I had two more hospital visits and like before, they were more precarious than I wanted. For four weeks, I would wear the fanny pack holding the infusion that led to the PICT line in my arm. Every week, we got a delivery from a homecare provider. After a month of that, I got to take the bag off and live relatively free for two weeks. This was repeated for five cycles: September to April.
A Bardo for the World: Leaving One Reality, Entering Another
And so, I am back in remission, although I have learned that remission means you don’t have cancer, but you could get it back any minute.
Always before, I went through these stages by myself. Losing the old Normal, entering isolation and in that liminal space I came to know as the Bardo, trying to adjust to rules of the new Normal.
Now, on this foggy morning in May, the World lives in the new harsh reality of Coronavirus. Steve is recovering from getting his ankle rebuilt. We have been in near isolation for weeks. This is like remission times the population of the world. I wrote in the blog before the second relapse: “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 . . . Remission is kind of grateful and fearful and mixed up and present and remote.”
Replace remission with coronavirus time. It fits.
But here’s what’s different: I feel like everyone has joined me in an uncertain remission. Each day we feel our way, tentative and aware of life, holding it gingerly and moving ahead slowly. Afraid and not afraid, we do what must be done.
One Day at a Time . . . that’s what I learned from my past remissions. We don’t know when the other shoe will drop. We don’t know if we will be okay. We don’t get a choice on opting out. Learning to live with this truth has given me a kinship to the Recovery Community. Each day will have its own character — and some will be lazy, rebellious, sullen–some will be hopeful, beautiful–miraculous, even. We start to notice how thin our flame of life can go without extinguishing itself. We start to notice we can be gritty. We start to notice we can be grateful, even when it’s hard. We start to notice that life cannot live in fear of death. We start to notice and find our truth and stand on it, because nothing else will hold us.
Thanksgiving, 2019. BCV (before Cornavirus) and during cancer treatment.
There has been a long time since my last blog. Frankly, I wasn’t sure if I would keep it going. But gradually, it called me back, this small record of living with cancer and reckoning with the strange wilderness of remission. Having left my last post out there, like a marker on the trail, I simply went on with my own daily truth, which turned out to be hard enough. Now I take up the story once more.
Enter The Bardo
I entered 2019 with a shadow over my head. In that strange eerie way of leukemia, little out of the ordinary blips were showing up in my blood work.
Steve and I went on to nearly a month in La Manzanilla, Mexico and the worry of it hovered over us upon our return into an uncertain spring. Still, for awhile, I convinced myself that the growing fatigue was normal, just another step along the path of remission.
The Medicine Dog
Our dog hunger was growing. Instinctively, we must have known we seriously needed the pure zest for life and love and patience of a companion dog. We decided on a puppy, and only regretted that a few times. We wanted a lot from our next dog, not yet knowing she would be called upon to wait for long hours in the Seattle Cancer Care parking garage, or be expected to calmly meet busy, noisy Seattle streets, full of things she’d never seen. We wanted a pup to make us laugh, who wouldn’t eat too many shoes (she did eat a few), wouldn’t shed all over the house, or wander and who would love all children and other dogs. In other words, we wanted Izzy (or Isabella, as Steve calls her), whose original name was Grace –and this signaled to me from the beginning that she was the right dog for us. Izzy came to live with us, in mid-April, and breathed her puppy energy on our lives, giving us an anchor of love and the groundedness of earthly needs and delights.
We settled into a hopeful rhythm, awaiting Mariya’s baby, walking and puppy training. But we had those trips to Seattle too. At the end of May, suddenly there it was, a positive for leukemia, unmistakable and cruel.
I always knew leukemia could–probably would– return. But when it did, I just couldn’t process it. This was the second relapse and the first since the T-Cell immunotherapy. I had somehow trusted and hoped this remission would last much longer. There was no time to mourn that it wouldn’t, or to reconnoiter. Immediately the oncologist presented me with hard options: the preferred being a trial for Keytruda –the wonder immunotherapy that had cured Jimmy Carter. It had not been tried for leukemia. All my options were draconian, for as the doctor didn’t say but I said, and he nodded, we needed desperate measures to keep me alive.
As the summer progressed, and a friend decided to end her life and pain quite publicly, I was drawn to the concept of the Bardo, borrowed from Tibetan cosmology, as a metaphor, –the state of existence between two lives on earth. I called on my old tool, disassociation, to keep me going. I was quiet, and restless and edgy and wanted only distraction. It was a gray and hollow time, completely separate from the summer blue skies and busyness of our tourist-economy town.
My personal experience of the Bardo, threaded its way between carefully scheduled and conducted trips to Seattle, each one punctuated with bone marrow biopsies or tests. I was facing death once again, as we all do, but don’t. Until we have to. I had no idea that the Bardo would come to overtake the whole world. I had seen the plume of smoke on the horizon, of an out of control wildfire coming for all of us.
Thy Will Be Done
I wasn’t sure I could face more cancer treatment. And what did that mean? Giving up? It was on my mind as a possibility. Not surprising that the only prayer that wanted airtime was : “Thy Will Be Done”.
Somehow, somewhere, perhaps deep in my mysterious body, my fate was being decided.
Our new grandson came into the world on June 17, 2019 by Caesarian: Wyatt Ingalls Hamilton, two weeks after I got the message the leukemia had come back. We were still figuring out how to navigate the next round of cancer, but we had a new grandchild and a new puppy. L’Chaim. Life had armed me for this next battle with new life.
In Part 2, I continue this journey toward our modern, communal Bardo, in the time of Coronavirus.
So, here is how I felt before the book (read to very end for the turn-around):
Remission: 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.
At 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.
The 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.
What 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.
The 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.
Our 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: https://radicalremission.com/
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.
“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.
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:
Greatly reduce or eliminate sugar, meat, diary and refined foods
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.
At 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.”
“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”.
“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.
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
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.
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”.
“And so,” my friend asked, “was it all you wanted?”
I love questions like that!
Yes. 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…
Iceland, the austere…
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.