Homecoming 2017

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

I love questions like that!

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

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

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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.

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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…

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Ireland, the hospitable…IMG_9373

Iceland, the austere… IMG_E9624

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

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

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A Trip, A Memory, A Dream

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

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Orsmaig Cottage, Isle of Mull

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

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View from Orsmaig Cottage

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

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Burren Dolmens

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

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

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

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

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

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1996, Mariya and Elena with friends in Killaloe

Lastly, this will be our anthem.

When the Great Day Dawns: from the Inuit  

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

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

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

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Killaloe

 

 

The Nowness of Now

 

The Nowness of Now

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

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Medical PTSD

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

IMG_7166Re-Building My life

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

IMG_7318The Remission Society

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

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

IMG_7320My deal with the dangerous drug that might save me…

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

IMG_7268Becoming Earth

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

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You Got to Walk That Lonesome Valley

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Maria’s sculpture

“Looks like your body rejected the T-cells”

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

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Drumming with Audrey

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

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Disposing of my old drugs

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

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

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The Methow Valley

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

The Turn Around

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

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Singing secrets to Audrey

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

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Madrona leaf fall

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

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The Beauty of Life

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

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Low tide on False Bay

You Got to Walk That Lonesome Valley

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

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We LOVED the eclipse

 

 

From Cytokine Storm to Complete Remission

 

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

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

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

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

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

T-Cell goes after cancer cell. 

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

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

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

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

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

https://egtheory.wordpress.com/2015/11/19/cars-for-all/

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

https://www.statnews.com/2016/08/23/cancer-car-t-side-effects/

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My speech for the Friday Harbor Women’s March

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

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

This was the introduction:

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

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

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

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

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

Shann Weston’s speech

Read by and collaborated with Kari Koski

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

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

From the Hopi Nation, an Elder speaks:

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

  • “Where are you living?

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

  • What are you doing?

What are you doing to protect your precious home?

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

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

  • Where is your water?

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

  • Know your garden.

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

  • It is time to speak your Truth.

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

  • Create your community.

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

  • Be good to each other.

And find ways to step outside your bubble.

  • Do not look outside yourself for the leader.

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

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

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

Our Declaration of Independence reminds us that:

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

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

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

We are meant for these times.

What are YOU doing for the Revolution?

 

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CHIMERIC ANTIGEN RECEPTOR (CAR) T-CELL THERAPY

 

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San Juan Island Cemetery, where our ashes will rest. 

I am sorry it’s been a long time. I entered the hospital on Martin Luther King Day, January 16. I knew I still had energy that would fade and used that vigor to write a speech for our local Women’s March. Our small town of  Friday Harbor had nearly 2000 marchers (including people from other islands) and speeches afterwards. I wanted to be represented. I will post that speech in the following blog.

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Chemo is cumulative. The last few days are always worse than the first couple. I got the same “Hyper-Cvad A”as before. That’s three different types of chemo, Mesna to protect the bladder from the chemo and steroids. This time they also put a PICC line into me, twice–the first they had to take out and re-do when the nurse who cleaned it accidentally pulled it part way out. picc-lineDuring all of this, I had access to cable TV and it was about all I could do. The stunning changeover from Obama to Trump was so big it filled and saddened my chemo drugged brain. The next day, the amazing Woman’s Marches from all over the country uplifted my heart. Steve took time away to march with friends in Seattle.

I stayed in hospital for a full week. The first spinal tap showed Blasts: (Immature blood cells. Leukemic blasts do not grow and age normally; they proliferate wildly and fail to mature.–from MedicineNet.com). So I had leukemia in my bone marrow and spinal fluid. The race was on to keep it from entering my brain. Every time I had a spinal tap, they took a sample and injected me with the chemo drug Methotrexate, so that it would be carried by the spinal fluid into my brain. The IV method of chemo does not penetrate the body brain barrier. How’s that for chemo brain? I had 5 spinal taps (also called lumbar punctures) in all, 4 at the SCCA after the hospital visit. The last two were clear.

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The dance we all dance

They also started me on ponatinib (trade name Iclusig). The primary target for ponatinib is BCR-ABL, an abnormal tyrosine kinase that is the hallmark of Philadelphia Chromosome + Acute Lymphatic Leukemia. It is both astronomically expensive and carries a black box warning (like the risk of suicide warning on anti-depressants). It has huge side effects and we could only hope that my “sturdy” body -(dubbed so by my first oncolocologist) would be able to endure them. It did, mostly… though there was a trip to the ER to rule out chest pain from heart attack (turned out to be sternum pain from the Filgrastim shots I was giving myself to increase my neutrophils). There have been lots of side effects. I’ve lost count. Hand and leg cramps from hell had me climbing the walls when they struck. Headaches from the spinal taps. Low red blood cells that kept me from being able to go uphill even the slightest little bit for lack of oxygen. Stiff Achilles tendons and deep fatigue. Still, I counted myself lucky to still have some appetite and some ability to eat.

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My hair fell out. The first time, I had my head shaved. This time, I didn’t. I don’t know exactly why. I do know it allowed me to toss handfuls of hair into the air off the ferry car deck and watch as it handed on the surface of the Salish Sea. I spread more on our property and more again in Seattle. It was like a private remembrance service, like spreading ashes on the body of the earth. At that point, we had no idea what would come next. The odds weren’t great. Even if I went into remission, there was 90% chance of the leukemia coming back.

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Just a few vials of blood.

When I entered the hospital, I had 80% cancer cells in the bone marrow. My last one showed less than one percent. That change was from the chemo and the ponatinib. Lucky me, to have just a little disease, because I was able to qualify for a clinical trial where you had to have some evidence of disease. If I had none, they would have zapped me with more chemo, hoping to get every little bit of cancer. Instead on February 15, we transferred to the bright shiny new 6th floor wing called Immunotherapy and entered a trial with CHIMERIC ANTIGEN RECEPTOR (CAR) T-CELL THERAPY.

https://www.lls.org/treatment/types-of-treatment/immunotherapy/chimeric-antigen-receptor-car-t-cell-therapy

This is a link to what it is, but basically, many Tcells are harvested. They take the harvested Tcells and teach them to recognize and attack a protein on the cancer cells. So your own body does the work of chemo. In the process, you become a genetically modified organism. And you have a 5 inch straw-sized tube inserted into your neck to harvest the cells (but only for 24 hours).

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I will have outpatient chemo for three days prior to getting the Tcells (to make room for the Tcells, they say). But who’s stressing the details? This has a chance of making me cancer free. I will be watched carefully for side effects after the educated cells are infused back into my body. There may be future hospitalizations. But sometime early in April, God willing and fingers crossed, I will be discharged and can return to the island to resume my life.

Something is stirring inside me, deep in my heart. I have the awareness that it  will be slow blooming. I know that because cancer is a busy life and this time we have had the luxury of coming back to the island nearly every weekend.

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Audrey, our granddaughter is the light of our lives. So when we are back on the island, she is our center. There hasn’t been much time for reflection. I have thought . . . when I am sitting around getting red blood cells or platelets . . .  that I am back at the table (of life), and what am I here to learn? Or do? Starting with Audrey, it’s pretty clear to me that I am here to stand up for her life and all the young and innocent of the world. As non-human life diminishes on this planet, it is clear to me that I am here to stand up for those who cannot speak. I am here for the sake of the future. As a grandmother and as someone who has been supremely privileged to see the world from the first glacier poppies alongside Denali to the crowded and colorful streets of India.

img_3961img_3984Because the blooming of what to do next is slow, compared the everyday logistics of cancer, the discovery and telling of it will also be slow. It contains the deepening of faith in the Creator and not being bashful to use the name of Jesus. I have been surrounded with scientists and humanists, but I have always had this faith. It is time to speak it out loud, especially when so many mis-use his loving, powerful message. The measured bloom of recovery, if I am fortunate enough to have it, will contain health as a priority and travel as a means to know the world. It will contain activism on every level I can conduct it without sacrificing health and joy. It will, as always, contain family, friends and community. Our world is deeply threatened. It needs all of us. If we are given life, we need to use it for the good of all. I want to live for the future, for gratitude, for faith, for health and for love of this world.

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Recurrence

I thought of a lot of fancy ways to say this. But the truth is, I don’t have the heart for it right now. Leukemia, as featured in The Emperor of All Maladies, is a fierce and wily foe. It doesn’t want to lose. They tell you that there is a strong possibility of cancer coming back from the get go. I always knew that. And like most of us, I just hoped for the best. But I wasn’t on the lucky side of statistics. And the leukemia has come back.img_3807

December was a month of infections. One after the other. That, in itself, is a symptom of leukemia. But then I started having other symptoms. Crashing blood pressure, fevers and racing pulse limited my movements and scared the daylights out of me. On top of that, my blood reflected something wrong, platelets falling, lymphocytes rising. The doctor and I had a talk that went too far down the possibility of recurrence to have any kind of peace of mind. A flow cytometry showed more disturbing signs. This test goes deeper into the cells and it is a primary indicator of acute lymphoblastic leukemia (ALL). It didn’t SAY I had leukemia again, but all the signs pointed that way. So, on a clear frosty Friday in early January, Steve and I drove to Bellingham and I got a bone marrow biopsy. On Monday, the doctor delivered the news. My bone marrow was full of cancer cells.

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The following week was pure chaos. I had no oncologist. I had to reach out to the Long Term Follow-up Team that has overseen my healthcare from afar at the Seattle Cancer Care Alliance (SCCA). I also turned to my previous oncologists, Roland Walters and Dr. Jennie Crews. They gave me the name of a new, ALL specialist at SCCA, Dr. Ryan Cassiday. That’s all I had at the beginning. There was a lot of howling at the monolith. The big institution of SCCA is like a huge tanker on the water, very slow to turn. In the meantime, the records between Long Term FollowUp, PeaceHealth and SCCA were on some strange journey of their own, mostly lost in space. You are the sick person wearing holes in the living room floor, trying to get information and provoke action, and trying to hold it together. They are the institution, dedicated to keeping their doctors safe from the likes of you until it is your turn. To be sure, I understand. Somewhat.

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So, on January 13, Steve and I finally met with Dr. Cassiday and learned what it is in front of us. There is no way to make it pretty. There will be heavy chemo and hospitalizations. There will not be another transplant (I wouldn’t survive it). I may be able to go home in between hospitalizations after my blood counts recover. It will harder than the last time because my body has already gone through this once. There is likely to be collateral damage to my organs.

So, if you can stand it and want to know, I will keep trying to write, in between chemo sickness. I go to the hospital on Monday.

When you get cancer, the modern culture wants to know why. Was it the fruit you devoured in an age when pesticides were common and organic unheard of? Was it your work? Firefighting, as I did in the early seventies? Was it the experimental farm that used pesticides where I worked for two years in Fairbanks? Or was it consuming red meat? Perhaps was it something I did or thought or felt or failed to do? (the most uncompassionate thought, in my opinion).

imageOr perhaps it was because I too mad about Trump? The election of Trump WAS one of the saddest days of my life.  The dark forces that have ridden in on the coattails of Trump are antithetical to everything I hold near and dear. But I don’t believe you get sick from bad thoughts — or no baby or child would ever have an illness, and many a worrier or angry person would never live to old. That’s not how karma or health works. The concept of “don’t worry, be happy” seems created to keep people from being outraged enough to leave their comfortable lives and undertake activism.

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I AM sad at an elemental level about this beautiful earth and the assaults upon it. I have been since I was a child born with a deep love for all things Nature. I was always a spiritual person too, one with a deep God hunger, and this fact now sustains me. So, while the sorrow for the world lives beside me, so does the love of beauty and delight in the intricacies of the natural world. One might have led to disease … or not. But the other nourishes and upholds me.

Everything I know and believe about the becoming a Grandmother means we step forward to speak out for the Future and all of our grandchildren and all of life. I want to do this and I want to know Audrey to know everyday that her grandmother loved her enough to fight for her world.

Stay tuned. I welcome prayers. I welcome your messages but please forgive me in advance if I don’t immediately respond. I may have my hands full. I am deeply grateful for your love and concern.

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A Baby… the Future…

imageLet me start with this glad tiding. Audrey Autumn Hamilton was born on the Autumn Equinox, September 22, 2016, weighing 9 lbs, 9 ounces. It was a hard birth but Audrey was big and strong. Though I didn’t attend her birth (Elena represented us), I did feel the awesome life force energy in my body during her entrance to the world and in the room right after she arrived on planet earth.

The life force is the same thing that stirred in my own fight to be healthy and overcome cancer. Completely fierce and completely from the animal body, it rises like a big wave from the ocean, inspiring awe and sometimes terror. It is the elemental energy that gives life and takes life. I am so grateful that I was given a chance to be a grandmother.

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Audrey’s birth has been life changing for me. As her grandmother, I am answerable for helping to create the world she will inherit. Which brings me the second life changing event. On a day few of us are likely to forget, Donald Trump became the president elect of this country. I am just barely finding words again so for now, I have to let grief find my truth. I learned how important this is when you need it during the year of cancer. It was an essential lesson for a time like this. Now, our country shudders toward foreboding and our planet’s climate shifts to something ominous. I have keened for the precarious future. I have also felt the seismic shifts and changes in the fabric of commonly held concepts amongst my progressive friends. We have pulled back and recognized the ways that we ourselves participated in the election of Trump: our non action, our laziness, our ignorance, not wanting to push outside our comfort zones and our willingness to post and spread half and non truths that were on “our side”.

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You, my sweet Audrey– you will not have the luxury and the delusions of the era before Trump. You will be a warrior–because you will have to be– and all of us who care about the future will be at your side. Becoming Grandmother has reminded me that there is no retirement. We may come to live under Trump’s administration (though, even now, I keep praying for a miracle). But we also live in an America where Indigenous people are rising and defending the sacred. They are showing us the way of life, to be on this planet with all the odds stacked against them but for their traditions and prayers, family and community. I am so grateful for their courage and leadership.

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You are also sacred, Audrey, and the dear and tender Earth is sacred. You are the Future I pledge myself to. My saddened heart is uplifted by you. I pledge not to give up, to keep fighting for your and the planet’s future.  I hope we come to know each other as we do this side by side. I pledge to keep joy and beauty, family and laughter and nature in your life. It is true, “The darkness around us is deep.” (see poem below) but your very presence shines a light on our path, in your innocence and your power to buckle us to our knees with love for you. Thank you for reminding me of why I am still alive and showing us what the work is for all of us. Here is a poem by a loved and trusted poet with great wisdom– William Stafford. The last stanza is espeically poignant at this time in our history.

A Ritual to Read to Each Other

If you don’t know the kind of person I am
and I don’t know the kind of person you are
a pattern that others made may prevail in the world
and following the wrong god home we may miss our star.

For there is many a small betrayal in the mind,
a shrug that lets the fragile sequence break
sending with shouts the horrible errors of childhood
storming out to play through the broken dyke.

And as elephants parade holding each elephant’s tail,
but if one wanders the circus won’t find the park,
I call it cruel and maybe the root of all cruelty
to know what occurs but not recognize the fact.

And so I appeal to a voice, to something shadowy,
a remote important region in all who talk:
though we could fool each other, we should consider–
lest the parade of our mutual life get lost in the dark.

For it is important that awake people be awake,
or a breaking line may discourage them back to sleep;
the signals we give–yes or no, or maybe–
should be clear: the darkness around us is deep.

-William Stafford

Dearest Grandbaby

This a special blog post just for you on these days before you come all the way into the world. You presided over the maligned month of August, hot and obese with tourists on our islands, in your Mama’s amazing belly — making her feet swell and keeping her awake, like any good baby. You will glide into your birth month of splendid September, on nearly everyone’s list of favorite times of year. Now this is the setting for your birth. You live in the middle of the beautiful Salish Sea. The leaves on the ground are autumnal, the garden harvests bountiful, and in Friday Harbor, there has been a communal sigh of relief as Labor Day came and went. Now that sigh is hung on every moment in our home, as we, the grandparents, scurry around picking plums and making the winter garden, hosting lawn parties and making soups, researching anti inflammatory diets while listening to acoustical music, cooking extra for your mom and dad; subsuming our anticipation of your birth with earnest tasks made with the perishable deadlines of ripening fruits.

You, my darling know nothing of this yet, as you float in your dream world in that dark mama cave of yours, on your own ripening deadline unknown to all but to some secret pact between you and the mystery of your birth. Take your time, little one. Be ready, for this Earth is so full celebration and beauty and though I wish I could shelter you from the pain and ugliness, I cannot. It is every parent and grandparent’s impossible desire. This much I know is true: You will be deeply loved. You will loved by your family and tribe, by the Creator, your angels, ancestors and the Earth itself. In turn, love and protect what is sacred. Work in intimate ways to heal yourself and all of Life. Make your Wellspring of Power be love for this living planet and the Holy Spirit that ignites and illuminates the world.

I can only offer a few pieces of knowledge for your journeys around the sun–may they be long and easy. Sometimes I touch on wisdom, but I am perhaps a young soul, who knows only enough to value the Beginner’s Mind. We, who are at the crone age at this time, can’t foresee what your elder years will look like. What I know is that life is full of twists and turns. You will be surprised. I hope there are many instances of joy in that astonishment. You will want a mate and family. Chances are good you will find them, but I cannot forecast it. So, this is what you can do, no matter what–Build yourself a strong community. Hold it dear and participate in every chapter, big and small. Find your place. It will call you and welcome you … you will know it. Get to know it as you would a lover, so you know what threatens and what restores it.

Travel. It will both broaden and deepen your perspective. It may be that voyages in your time around our globe will look different. They will almost surely be closer and more mindful of the cost to the planet than ours were. But find a way to value the stranger and the “Other”—the person who is not like you.

This blog has been full of heartfelt messages that I have repeated over and over. You may find some trail markings in it. I hope to live long enough to see you grow. I will always help you. I will always love you. Seek beauty in the ordinary things all around you, granddaughter. Be of service to this astounding home planet. If you learn to say one prayer every day, make it “thank you”. You will never regret it.