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.”

1^st 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

I will press on, be what it may

And I will be grateful at the end of the day…”

The Failed Keytruda Experiment

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.) 

https://www.mdanderson.org/publications/cancerwise/immunotherapy-side-effects–what-to-know.h00-159228090.html

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.

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.

 

 

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.

The Bardo

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.

The Grandkids

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.

Resilience: 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. https://www.forbes.com/sites/francesbridges/2017/05/27/5-ways-to-build-resilience-from-sheryl-sandberg-and-adam-grants-new-book-option-b/#4799276d4115

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.

 

 

 

 

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.

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.

 

 

 

 

 

 

 

 

Recovery 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 https://www.aspenridgerecovery.com/blog/what-does-the-saying-one-day-at-a-time-mean/

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

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.

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.

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.

http://gettingclosertomyself.blogspot.com/2009/07/what-does-it-mean-to-live-in-remission.html

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”.

https://emedicine.medscape.com/article/210367-overview

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

 

 

 

 

 

 

 

 

 

 

 

“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.