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.

 

Three Years Old and Counting

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Maria’s sculpture, somehow my daemon

It’s been awhile since I’ve blogged. It took time to come back to this page. On a sunny Father’s Day celebration on Orcas Island, I caught a chill that felt like it was floating around looking for something to do. Once that chill settled in, I couldn’t get warm and then I went down like a felled tree. Why? I don’t know. My immune system has been getting stronger and older. The only thing I can think of is that Mariya’s immune system had never met that mean little bug and did not have the resources to fight it off.

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Just before the chill set in

Anyway, after that initial chill, I just kept getting sicker and sicker, not eating or drinking much, as wave after wave of fevers and cough spasms kept me down. Finally I knew with absolute clarity that I had to go to emergency room, and Steve drove me in. Within minutes, I understood how sick I’d been. There is a tendency to hold on to the idea that “it will pass” for longer than is wise. My blood oxygen had dipped into the low eighties (high nineties is normal) and I was completely dehydrated. The nurses told me I wasn’t making much sense. Without ado, they admitted me to our small local hospital, put me on oxygen and IV fluids, and gave me the bronchodilators I needed to quell the continual coughing spasms. Double pneumonia, they said. We can see it on the CT scan. Two days later, I was released.

It was a sobering recovery. Anyone who has recovered from pneumonia will tell you the same –it is a long recovery. Four days after the hospitalization, I recognized the symptoms of PTSD. The experience of being so weak and sick and the smells and sights of the hospital, though welcome and efficient, had thoroughly traumatized me. My soul, along with my physical body, needed healing afterwards not only from cancer and chemo but from all the serious attacks of illness I have experienced since. The good news is that I did heal. The emotional and physical scars are mended. I am back to weight training and walking and socializing. But I know how complicated and fragile the human experience of “wellness” can be.

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Family Picture, all five of us

You never think about your elbow until it gets injured. That’s exactly why gratitude can’t be an after thought. You never know what’s going to happen. The only way to be ready is to be grateful. Cancer has been a hard teacher but I am appreciative for the education. Never take your life for granted. I turn three on my re-birthday on August 21, by the way. How fun is that?

Making a shift— here it is, August. This is harvest season. We harvest from the seeds we have planted, whether they are broccoli or inner plans, desires and intentions. For me, I have a little reward now for facing up to metabolic syndrome and not just saying “well, that’s the doctor’s job”. If I had, I would now be on several medications for life.

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Maria’s sculpture: the stuff that’s behind me..

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Fresh peaches, anyone?

I meet so many people who have it and don’t know because no one is connecting the dots. To cure a syndrome, you have to recognize the symptoms you have are not occurring at random. They are related to each other. And you have to go after the root cause, which is handily contained in the name “metabolic”. In other words, your metabolism has slowed down, and that’s why that little fat line has started to live around your middle. If you keep eating the way you always have, you are in trouble, it’s that simple. The cascade of bad effects, starting with high blood sugar and high blood pressure will cascade into high cholesterol and triglycerides.

These highs, allowed to go their own way, will lead to diabetes, congestive heart failure and heart attacks.

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At the Lawrence’s

Here’s the first part of my Rx for this pernicious syndrome. First and foremost: exercise. Yes, I know that’s on everyone’s list. It’s like asking what do humans need to survive? Well, everyone would have air and water on their list. Exercise, which I prefer to call movement, is on every list on the road to getting healthy for the same reason. My naturopath advised me to keep on weight training. She said “don’t regard it as optional”. Weight training increases metabolism for hours after the exercise. That’s a pretty good deal.

I have brought my blood pressure to normal after several bad side effects from medications. I’ll tell you how in the next blog.

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Natalia’s Poppy: food for the soul

The Post Cancer Life: Metabolic Syndrome

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Maria’s wonderful sculpture

First: My Planetary Observation

The fields of grass shimmer in the winds what should be spring/early summer. It looks like and feels like mid/late summer. Any observant person notices that the seasons are out of sync with what we knew growing up. The days that designate spring to summer and summer to fall and on through the equinox and solstice are based on the sun’s hours of shine upon the earth. But the earth’s seasons are in a wobble and out of kilter (kilter meaning balance or proper order)— “out of kilter” meaning out of balance, crooked or malfunctioning. We don’t know what the cause is but we sense that at some very profound level the seasons feel off.

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Rainbow at Orcas Landing

The Post Cancer Life: Metabolic Syndrome

A growing suspicion had been lurking after receiving my lab results and I am doing the only thing I can: checking it out with Dr. Google. One article, especially, catches my eye.

“Metabolic syndrome and cardiovascular risk in survivors after hematopoietic cell transplantation” http://www.nature.com/bmt/journal/v47/n5/full/bmt2011118a.html

The article begins with good news.

“Increasing numbers of hematopoietic cell transplantations are being performed annually with a greater number of long-term survivors.” (Hematopoietic = Stem cells that give rise to all the other blood cells.)

This is good, right? Of course! Here’s the bad news.

“… transplant survivors experience mortality rates higher than the general population and the risk of premature cardiovascular -related death is increased 2.3-fold compared with the general population.

I always had good labs, when it came to my cholesterol and triglycerides. That has suddenly changed. Not only that, but upon noticing an increase in blood sugar, I asked for an A1c test for long term blood sugar. Notice I asked, it wasn’t suggested. Confirmed, overall blood sugar on the rise. And blood pressure was up too. What was going on!? The article goes on:

“…increasing evidence suggests that Transplant Survivors are at higher risk of developing adverse risk factors leading to the development of the metabolic syndrome (a constellation of high triglyceride levels, low high-density lipoprotein-cholesterol, hypertension, high fasting blood sugars and increased waist circumference), which then predisposes individuals to risk for early cardiovascular-related death.”

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Lisa with horses on a day that could be late July

At this point, I don’t even know what to think. This little thing, JUST A TOTAL LIFE CHANGING SITUATION, had never been mentioned. Turns out Insulin Resistance is the prelude in this symphony of Metabolic Syndrome and there is no doubt that I started showing signs of that soon after my several month long encounter with prednisone, the paradoxical steroid that cured my graft vs. host disease, and gave back my appetite but also full blown temporary diabetes. And if I don’t do something strong now, I will have permanent diabetes. I saw enough to know I don’t want that, if I can escape it.

Another article concurs: “High prevalence of metabolic syndrome after allogeneic hematopoietic cell transplantation” Note: allogeneic  = transfer of stem cells from the donor to the recipient. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2628412/

In other words, transplant survivors are at a high risk of developing diabetes and dying of heart disease. That is the reason I bring it up in my blog. I know it is dreary, but according to the American Heart Association: “About 34 percent of adult Americans are estimated to have it. Risk of developing metabolic syndrome increases as we age.” You may be at risk of developing it. But if you are a transplant survivor, then sit up and take notes. This message is for you.

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My transplant allowed me to live. Now I want to meet this new one.

About two or three years out of cancer and you have all of these symptoms, this cluster, and no one says “it’s insulin resistance, which is the beginning of metabolic syndrome and we have to treat the whole thing”. It would be so easy to just take a handful of  prescribed pills every morning. The side effects, they tell me, are “minor”; just things like muscle weakness, stomach upset, headache, swelling (edema) of the lower extremities, dizziness, drowsiness, tired feeling, stomach pain, or flushing. muscle pain and damage, and liver damage. Could it be that all of these things are just accepted as collateral damage? Could it be the doctors just don’t know about this because they haven’t had time to discover it? Okay, as before, when I get into this arena, I write and erase, write and erase. The truth is reluctant, then comes at me with the same force of losing my faith in journalism through the shams of the current election year. I am shocked and saddened and aware that my faith and mental image of the medical world, as well as the belief that the “news” was news, has been naive.

If I don’t fight back and challenge and just take the statins, or any of these others, the side effects are quite likely to leave me feeling so unwell that I do not do the one thing that I truly need to do: move.

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The food I should be eating (courtesy of Mariya)

So, here’s the post cancer plan. Radically, I am going to put health first. I have to if I am to see my grandchildren into this beautiful and perilous world. I know my old fashioned body needs old-fashioned fixes. Movement and diet become the cornerstones. Physical activity is a healer. So is a high protein, low sugar diet made from fresh local, organic and sustainable food. There are many plant healers. Today, when I go to the doctor, I surprise them by listing only one prescribed drug but several supplements.

More on this as it comes. It all comes down to being your own doctor. You have to be. If you find a good one, hurrah. I am not advocating that you abandon the medical world. They are very good at what they are good at: fixing specific ills. But beware the side effects and addictions of the cures. Whether you are sick or healthy, you have to be involved in your well-being. Choose life.

More on Metabolic syndrome https://en.wikipedia.org/wiki/Metabolic_syndrome

More on insulin resistance.

http://www.drweil.com/drw/u/ART03085/Insulin-Resistance.html

 

 

Homeschooling Myself

Life after cancer requires a whole new education. I have to find my own teachers and write my own curriculum. The mind is incredibly important in the healing process. And cancer, like any life altering illness, is a wake-up call. I have struggled with how to frame the consequences of a disease that melts away the former self confident map, replacing it with a trackless expanse of unknown length and size. You can’t do things the way you always did. You don’t even want to. But to have no compass and no map is too strong a challenge for someone who has been through cancer and its unrelenting therapy. At least for me. Cancer ripped away my old structure. I got this idea about homeschooling from a radio story. I found myself smiling, picturing this way of learning. And that, I thought, is exactly what I am doing!

My first class is my foundation: Nature

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Persephone, eager and dressed in her yellow and pink robes, is racing across the damp soil into the ever- lengthening days. The drought-fueled urgency that caused us to imagine uncontrolled fires and emergency water measures was followed by the wettest winter on record. El Nino was forecasted to create a dry winter in Northwest. This will be a more common error, they say, as the old cycles no longer function in a dependable manner. No wonder it seems hard to plot a path through the tumble of days. The Earth itself is perplexed and showing signs of angst. Once again, I get the clear message that life never goes in a straight direction.

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Second class: Journaling

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Healthy movement in Mexico!

I came back from Mexico bug bitten, sleep starved, hungry for fresh vegetables, and so completely satisfied. My feet were strong from daily beach walks. Yoga practice steadied every day. The first few days of our return were hard, a tumbling through interstellar space that is every traveler’s payment for leaving home. As it turns out, being home is every bit as challenging as travel. By the tail end of March, the lamb gentled the lion, I finally settled, and we entered into the astounding beauty of April.

I want to keep writing this blog. I wasn’t sure at first. Now that I am significantly symptom free, the high drama of the early intense and sketchy days feel like the memory of drought. During that time writing to you all out there was my lifeline. Now I am here, cancer-free, for how long I don’t know but then — no one does, do we?  I feel like the Earth, stepping uncertainly into the new age of climate change, not sure what exactly to rely on.

Third Class: Reflection

I was cured, through some alchemy of modern medicine and generous family, wonderful friends and community. I find myself frequently musing on the other subtle factors: the spirituality, genetics, angels, stubbornness, escapism, and imagination. And remembrance: I was cured by memories of walking on these very islands, through magnificent old growth trees that fed my soul when I didn’t know what was coming, and by beaches and mountains that sang me to sleep at night, even in the city, when all I could hear was the freeway.

Anecdotally, I hear that people who come back from cancer and stem transplants are never quite “the same”. I have come to believe that we all change into different people incrementally, day by day. What I know for sure is that I am exploring the challenge of leading a cancer free life. When I was sick, two friends fought for their lives and lost. Their valiant husbands chronicled their every day…until, unexpected and yet anticipated, the narrative simply stopped. So, changed? You bet. I am changed.

Fourth Class: Health and Science

Keeping health together takes time. Two hours day, at a minimum. Time to thumb through the new ways of cooking. Time to do it. Learning what the word “Apoptosis” means. You know that cancer is uncontrolled cell growth. But learning that apoptosis or programmed cell death is a way to fight cancer is a whole new level of knowing that. Suddenly you look at your diet and you might just be slightly horrified. Learning to implement these foods consciously everyday maybe goes under “Home Economics” in my homeschooling day.

This link to William Li’s Ted talk will get you started.

https://www.ted.com/talks/william_li?language=en

Here is Dr. Li’s list of foods to starve cancer

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Now,  I am trying to incorporate at least one of these foods in every meal. Here are two great books to start to base your life on.

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It’s kind of exciting. A whole new journey.

Fifth Class: Recess

What an important class! And remember when it was your favorite point of the day? I am encouraging the childhood pleasures of wandering and playing. I want to be amazed by beauty and pouring gratitude back to the Earth that sustains me. You never know when the narrative will stop.

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The top of Mt. Young. One way to get vigorous exercise.

Read this article.

http://www.webmd.com/cancer/features/exercise-cancer-patients?page=3

It says that most people stay sedentary after treatment! I know this from watching others and from fighting it. Fatigue still lingers around the edges. Worse, the manner of being a couch potato makes its sneaky way into your muscle memory.  And where to start? Recess was play but now we know we need aerobics, flexibility, balance  and strength training! No wonder I am stumped when people ask me what I am doing now. Staying healthy could be my new career.

http://www.nytimes.com/subscriptions/Multiproduct/lp8QH64.html?articleId=1&WT.mc_id=2016-CPLTEST-FB-MC0-3

This article tells us the research shows that “the sweet spot for exercise benefits, however, came among those who tripled the recommended level of exercise, working out moderately, mostly by walking, for 450 minutes per week, or a little more than an hour per day. Those people were 39 percent less likely to die prematurely than people who never exercised. Like medicine, exercise is known to reduce risks for many diseases and premature death.”

They found that, unsurprisingly, the people who did not exercise at all were at the highest risk of early death. And we didn’t fight for our lives to die because we found being stationary too comfortable.

Sixth Class: Spirituality

imageI am going to church again. It is a very fine Presbyterian church, with beautiful music. When I was a kid, I asked my dad to drop me off at a church much like it (neither parent did it themselves). I have always loved going, even when I learned too much for it to be easy. When I told my friend Nancy, as Episcopalian minister ,about it, she commented “that’s a lot of God hunger”. It is. As a liberal, I often feel I have no place to stand in church. But I go anyway, and I find God in the silence and the prayers, and in the beauty of the music and also in the stories. I am fighting for the spirituality I long for to feel its way through the religious frameworks. I feel the enormous comfort of knowing that Jesus once walked the earth and I can’t quite put a whole picture on it yet. Maybe I never will. But neither will I deny it.

I have a grandchild coming into the world. That also changing me. At 65, I am trying to rise to the challenge of living a cancer-free life for as long as luck the fates and God have planned for me. I lean into the Earth’s own life, knowing that we are one. If I was saved, I say to myself, I must have purpose now.

I am here, in the place I was trying to get to, when I was so sick. Like a soldier who feels the tremendous loss and sadness of fallen comrades, I know I owe it to those that did depart to enjoy a beautiful spring day in the middle of the Salish Sea, 2016. For them, and for all who surrounded me with love, today and everyday, my first purpose is gratitude.

Seventh Class: Field Trip!

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I had fun going to a presentation in Sidney, B.C.!

 

The New Year

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  • We are gathered up close around the table a beachside restaurant on a moonless Mexican night. Stories spill out between us, easily like we have known each other forever. The tale of an old man nicknamed Milagro is jointly told by Laura and Jesse. Seems Milagro was snorkeling when he ran out of strength to come in. Hector, who was standing chest deep in the water fishing thought he heard a call but thought little of it. Then he noticed the man had stopped moving. He dove forward and swam out to the still body and pulled him back to shore. Milagro had swallowed so much water, I could still see the amazed horror in Jesse’s eyes as he told the story. But the end of the story you already know–for who would call an old man Milagro unless he was in fact, a miracle. He survived and walks the beach today.

I like this story. Someone was in trouble. Someone paid attention. Because of that Milagro is still with the living. Just like that, we can so easily die. By some serendipitous luck, we are called back to life. As we walk home on the dirt streets, Steve asks “what was it about that story that caught your interest so much?”

“Because I almost died, too” I respond, simply. “That’s all.” Perhaps it is his nickname. Milagro. I also live with this nickname, Milagra, in my case. I also walk the beaches again with the knowledge that my life is a miraculous gift. In the cancer lexicon, I am two years old after my stem cell transplant, my re-birth.I know now that normal is ridiculously complex. Ordinary is gloriously extraordinary. I will forget this everyday and go on with the careless attitude of living. But I will also remember it in unexpected moments, when the forgetting leaves me thirsty, and I drink the beauty of the world and know the miracle of me.

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Children playing

Yesterday evening, we watched the sunset, like we, and so many other people do here, day after day. The sea glittered with an orange sheen over a silver blue surface. Mexico allows an unhurried pace, the warmth encouraging another 10 minutes, forgetting what we were supposed to do next. We ponder beauty here, as we do at home. In the north, I can stare out my window for a long time, too long, as it turns out, when the weather is cold and rainy. I made it to my 65th birthday. Now movement and beauty have become precious priorities. The thin sliver of the new moon hung in the afterglow of the sunset. This elemental life is a balm on the wounds of what became an overly focused and increasingly technological career.

Elena day dreaming at the Cultural Musem in Mexico City.

Elena day dreaming at the Cultural Musem in Mexico City.

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The wedding that brought us south in December. I was the officiant.

I am healthy now. I also know how fleeting this can be. Health, as it turns out, is comprised of small everyday practices. You can talk all you want but life requires action. And, ironically, non-action. Everything about my time with cancer — the hospital stays, the medications– especially the steroids– was imprinted by sleeplessness.  A few months ago, when I talked to another cancer survivor, she noted that this sleepless pattern became nearly tattooed onto our souls. I pray it’s not permanent.

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Mexico City

When I was sick, it felt dangerous to relinquish control. Now I understand how destructive insomnia is. The act of turning away from the feminine receptivity of rest is a kind of violent resistance to the rich unconscious realm of dreams, and the symbolic language of intuition.

By committing to learn to sleep, I am doing something radical. I am healing a tendency to want to be able to manage the world around me, and I am telling my body it is safe again to sleep. I can rest my life and let the Great Spirit be the boss of the world.

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On a hot, moisture-laden night– with firecrackers blazing and luminaries floating– in the noisy open air of Mexico, we celebrated the last day of 2015 with good friends and both daughters. I love the Pause, between my birthday, December 20th and the New Year. For several days, time feels suspended in the short days and long nights. Once the year grows legs, about mid January, it starts to gallop, and it doesn’t ever really stop. Up toward the. Zenith of the Summer Solstice, down to the Winter Solstice… Pause, start again. It is a great time to think about the year past and notice what happened. So easily, we could let it go by without doing that. So easily, our life could flow by without any kind of attention. So, we pause. We celebrate and acknowledge what happened. And then we set our intentions for the new year. Just intentions, mind you. Very tenderly we touch them, knowing we will forget them, become inattentive once again, modify and deny them. Still we do it, because we are hopeful.

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