The Post Cancer Life: Metabolic Syndrome

maria's sculpture

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.


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”

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.”

lisa and horse

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.

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.

mar and me

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.

good food

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

More on insulin resistance.



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


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.


Second class: Journaling


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.

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


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.


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.


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

Read this article.

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.

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!


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


The New Year

  • imageimage
  • 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.


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.


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.


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.


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.



Mexico Dreaming


The bags are (mostly) packed. Tomorrow we head down I-5 and to Seattle. On Tuesday, we leave for Mexico. The human side of Planet Earth feels kind of unsettled, with a stubborn streak of mean. At least that’s the world the news tells me about. The irony is that this culture of fear just lights the fire of our desire to wander.


Rufous and Steve doing yoga.


Jack looking for whales.

There has been angst in our preparations. There are three dogs within our family—Big Jack, Happy Rufous (Elena’s) and The Lady Tickla (Mariya’s). Getting them sorted out and taken care of has taken a lot of time and care and worrying. Everything about dogs spells the comfort of home– the wagging tails, the playful wrestles, the vigorous walks around the property. Their sighs of contentment signal all is well. My heart usually sighs the same with contentment at the end of the day.


But now, we make plans to leave. We want Mexico. We want that warmth and that non-American mindset. We want to be reminded that we are travelers, as we have been since before Steve and I met each other. Our relationship can always count on the remarkable truth that, at the end of the day, we will be sitting on the same virtual bus-stop, waiting and eager to be taken out into the largesse of the world. In our living room, we are contented and we are restless. We don’t want change this. We just need to attend to the two halves of our souls.


New solar panels on the house.

rainy day

Looking out our front room.

So we kiss the dogs tenderly and tell them to be good to the housesitter. We attend diligently to the many details and the annoying and agonizing tasks of getting ready to go. And tomorrow, we will turn our faces to a foreign but familiar horizon and go see what the world is doing.


Exit Glacier, Seward, Alaska

As for a health update, there isn’t much. Still cancer and CMV free. That’s the main thing. I still have my moments, when suddenly—in the middle of the night, I will lose my lunch. There are still times when I don’t have the energy to do much of anything. I am still more introverted than I used to be before the tangle of cancer and its aftermath. I enjoy getting out and doing things but I always need to rest to balance it. If I don’t protect the chi, it will unravel my plans. I am bringing a large apothecary with me, full of supplements and vitamins to keep me strong. However, in the past, Mexico has always healed me within days of my arrival. When I was working, it wasn’t unusual to arrive very exhausted and stressed. The warmth and elemental lifestyle of being outdoors and walking everywhere was always miraculous in its effect. I hope for this. I’m quite aware of the possible dangers, but I am not ready to have this fear rule my life. Mexico is a place for simplifying, for creativity over entertainment, for exploring another culture and for the unadulterated absorption with beauty.


The dahlias wouldn’t quit.

Those beautiful fall colors are gone. This year it seems the “season mixing” was very strong. Summer bled into fall and then autumn itself carried spring into many days. The grass grew in October. We had April in November. But now… well, now it’s definitely almost December. The days are short. Time to go south says my body. We are migratory birds here.



The wedding in Homer.


Matanuska Glacier, Alaska.

With softness, we leave behind this sweet island, doggie family and our dear community. Fingers crossed and God willing, we’ll be back in two months. We will think of you often. The daughters and Steve and I will be together over the holidays. We will go visit special cousins in Mexico City for Christmas—a trip we’d planned last year but couldn’t complete due to my fragile health. We’ll help our coastal friends build back from Hurricane Patricia. Hasta pronto! See you soon.

Two Years Old!


Car meets Montana

It has now been two years since my stem cell transplant. You count long term survival by one year, two years, five years and ten. If you make it to one year, you have survived the acute infections like the one that almost killed me when I was flown off island in December of 2013 and the ravages of acute Graft vs Host Disease. If you make it to your second birthday, which I did on August 21, 2015, it means that despite the bouts of CMV pneumonia and colitis that threatened my health and survival, I now can take refuge in the quote: “Most deaths occur within the first 2 years after transplantation.” I’m still alive. That wasn’t a given. I am grateful everyday for another day.

The article Long-Term Survival and Late Deaths After Allogeneic Hematopoietic Cell Transplantation concludes: “The prospect for long-term survival is excellent for 2-year survivors of allogeneic transplant”.

(Note: my transplant was haploid, from my daughter Mariya and there is not as much research about this newer kind of transplant. So we just need to rely on the available science.)

However, the article continues, “life expectancy remains lower than expected”. I stumble on this a bit, and then I come back to what I learned during my illness.

elena andmemarnadme

Life isn’t a given. Be grateful for the gift. Everyday.

Survival is not as important as a life well lived.

Grace and forgiveness are a way of being in the world that help ready the soul for whatever comes.


The Daily Play


The Daily Beauty

The article describes an analysis of 6,691 survivors who underwent transplantation for a number of blood cancers, … including mine … (acute lymphoblastic leukemia (ALL)) … who were alive and free of recurrent disease at 2 years after transplant, had a 89% chance of making it to their 5-year birthday.

Of course, the other shoe has to drop, of course it does. “Nonetheless,” the article warns, “late life-threatening complications occur, and these observations emphasize the need for prolonged follow-up to prevent, identify, and treat late complications to optimize long-term outcomes. Recurrent leukemia is the chief cause of death for patients who underwent transplantation for leukemia. Chronic Graft vs. Host Disease (GVHD), infection, organ toxicity, and second cancers were the next most frequent causes of death.”

The naturopath told me I’d been in stage 2 kidney failure twice. My heart, kidneys, intestines, and liver have taken a pounding. Will they be able to heal? I am hopeful. Chinese medicine and herbs provide the healing that allopathic medicine knows nothing about.

steveand dick

Family Reunion Cooking


Desperadoes at the Family Reunion

I always read these reports (which I do rarely) with a sensation of being on a slow motion roller coaster. They caught my disease early. That’s good. But 62 is considered an older age, which is bad. I did not have really bad GVHD, though it took a lot of prednisone to survive it. But those two factors (age + GVHD) are associated with greater risk of relapse. Between Year 2 and Year 5 is the greatest risk of relapse. If I make it to Year 5, the chances of relapse diminish.”

Sigh. So much gobbledygook. I made it to Year 2, hurray, and I celebrated my second birthday with dear friends and creativity, a massage, cake and presents. It was perfect.

bisonus seabeck

This has been a traveling summer. We travel because we’ve always traveled together. And because we have family and friends to see. And because in some very real way, traveling brought me the greatest hope and desire to get better. Steve and I are in Alaska, as part of our yearly pilgrimage to the place where I challenged the world with the fiercest young adult energy I had, exploring wilderness and native villages, living in a hand built sod cabin without electricity or water and loving my sled dogs. Steve was mining and trapping and living alone on the Yukon, being a policeman and working on the pipeline. Together, we knit the kind of community that holds together when it is 50 below for a month at a time. We met on the Koyukuk River in the southern Brooks Range, and both daughters were born here.

I like to say those things out loud every once in awhile to remember they happened!

I have almost, but not quite, regained the casual expression of life that people who have never gone through a life threatening illness just have. I have the bounce back in my step, the capacity to eat nearly everything without feeling bad, and regained the muscles (and weight) I’d lost. But if the day is 100 yards long, my ability to partake in it all is about 80 yards. I just need more time to myself, and more time to rest than I used to. My brain was clearly injured by chemo and I am trying to simply be in that new reality. Interestingly, the right creative and big concept side is the healthiest, and the left, linear is the side that sometimes struggles. Perhaps this injury is still healing and needs to withdraw from the turmoil of the world to mend. I don’t know. I am different, and that is one quality I notice has changed. The changes are subtle but they are certainly real.


At Old Faithful

The summer home and traveling have been fabulous. I have felt good. Steve was diagnosed with Rocky Mountain Spotted Fever by the local naturopath. He was significantly impacted, with pain too strong to go easily about life. Despite the unpleasant side effects, the antibiotics he’s on have taken away the debilitation and allowed him to regain his mobility. Once again, we are out in the world in our way, meeting people, sticking to the low end of the budget, and following our noses to the next spot. We went to Montana for a Porten family reunion and to our beloved Unitarian Universalist family camp at Seabeck, Washington.

The world is full of so much pain and beauty. What a privilege and challenge to be alive and participating in the dance

Summer, 2015

fireskyA haunting orange yellow sky appears on the day after the Fourth of July. Fires to the north, south and east. And everyone on tenterhooks about our own possibility for flames. Our little island had a reputation for raining through the Fourth and then drought until late fall rains. BUT. The drought has been here for awhile now. Our snow pack is virtually nonexistent, rivers are dropping precipitously and temperatures are soaring. Our food and our wildlife, especially, are at risk. And our trees. The thirsty trees. On our own land, we are almost in triage mode with the trees we want to thrive and the water we don’t want to run out of.

This is a blog about stress. I am exploring how to live around and with it and not get sick. I thought I would start with one of our community stressors. My conclusion so far: If you are paying attention, you are experiencing stress.

I had a short conversation with a stranger who didn’t know my recent history and I didn’t tell him. He asked me “what my work was”, perhaps curious to answer the age- old question of what we do on these islands . . . I called myself a naturalist, which I still am. It was nice not to be identified with cancer, but also a little weird because had I not gotten sick, I would have had a different answer for him. I would still be working and it would have led me to new places.

Just saying. But I did get sick. Sometimes, I do wonder, what would I be doing… if I hadn’t gotten cancer? It is, of course, an unanswerable question. Right now, I can mostly say I am living life, which is more than I thought I might be doing two years ago, and which should be enough, right? It SOUNDS right, but it is hard to believe that consistently.

Recent visit to California!

Recent visit to California!

Mariya the fitness coach

Mariya the fitness coach

For the most part, I feel good. Except for a few nights ago when I threw up 10 times in the middle of the night, drenched in a cold sweat. The next day I was predictably low. I am often just a little sick to my stomach. My cancer markers show no return of the illness. CMV IS back, AGAIN—so my bad night and persistent nausea could be that never-ending virus. Or could it be that I ate too much bread? The only one who doesn’t think that’s a crazy notion is daughter Mariya, my donor, who reminds me that she reacted like that to bread during college . . . bad enough to land her in the emergency room.

What we do know is that my GI tract went through so much trauma that really, I should be amazed it functions at all. I have gained and kept weight well enough to put away my skinny clothes (today— mark the calendar!). Once again, I need to remember that healing is what I need, and only I can really do that, through good food and herbal medicine and other supplements. And Rest. Recognizing that I will always have larger ambitions than I can carry out, not to mention the crazy number of events and causes that go on in this little town, the ambition to rest more is laughably ironic and ridiculously difficult.


Steve–Hamming while Clamming.

Am I discouraged that the CMV is back? You bet. I really am. I hoped I’d vanquished it. But it may come back every time my immune system gets a little weak. I wish I could tell you that I changed everything for the better after being sick. Righteous Shann would always eat well, exercise daily, get enough sleep, never worry and have focused purpose in her life. Real life Shann does these things sometimes. Real life Shann often finds herself floundering, wondering what to do next. Real life Shann does get alarmed when she doesn’t do the right things because she knows that stress attacks the immune system. Then she gets stressed out! And she goes back to doing better things for herself…until she falls off the wagon again. Stop being so hard on yourself say my counselors.

The advice of the day, from everyone, is to reduce stress. But I am deeply sensitive to human-made noises like the intermittent din of the Navy Growlers from Whidbey Island, a sound that has unfortunately become too common in my world. I am also susceptible to silences that shouldn’t be there, like when the buzz of native bees ominously diminished a few years ago. Like many others, I am sensitive to the modern world. It stresses me out. And I worry about the earth.

Another clammer.

Another clammer.

You can’t find an environmental cause that isn’t based on a kind of Holy Worry, which though huge in its consciousness, promotes anxiousness as a kind of soundtrack for your life. If you choose to care, which I do, I care the way a mama worries about a child, with all my heart. I have found two alternatives: 1-develop an “I don’t care” mode or 2-shield myself with meditation, mindfulness, gratitude and appreciation. . . when I remember.

For over 60 years, since I was a young child, I have experienced the destruction of the earth by humans, not to mention the decimation of people by people. I know I participate in it. That’s a lot of consciousness, and I have been fierce about not wanting to let it go.

There is a web site out called “iWorry”. In their own words, iworry is a campaign created by The David Sheldrick Wildlife Trust (DSWT) and exists to protect elephants by raising awareness of the threats facing the survival of the species.”Without the iworry campaign, and others like it, the Earth, it seems, has little chance at all. It needs people to read about, worry on its behalf and take action.

About 30 years ago, I left behind the disillusioned environmentalist I’d become and deliberately took a different perspective, focused on the immense grandeur of the Earth’s most basic cycles, the astounding spaciousness of the Universe, the quirky and spooky paradoxes of quantum physics, as well as the gorgeous and grounding beauty of the seasons, and the grace and preciousness of ordinary life. This still helps me to function on a planet whose troubles I know too much about.


Fake it till you make it???

So, now I have had acute leukemia in my past, and want it to remain there. I have to remind myself of this daily. I almost died. Do I rest? Sometimes. Sometimes I feel urgent and punchy, as though the tasks must get done, before my energy ebbs.

Stress is a killer. And it is pervasive. So how to keep from dying from it? Stress reduction, also insipid in its terminology, is far from that in action. It is warrior’s work. It is spiritual work. We live in a world engineered to makes us both ADD and anxious. There is very little consciousness in this outer world around us. Not surprising that it is the hardest work I have ever done. How do I look into an red-orange sky and not worry? How do I say no to so many things to do?

Going back into my own writing for clues, I find again the work of the 90-something activist Grace Lee Boggs, who astounded me a few years ago with her message. “We have reached a time on the clock of the world where we need to make a new beginning, a paradigm shift in almost everything thing that we do.” And it all depends on our souls, Grace says, a power that can “make a way out of no way.” What we can do—is grow our souls. That invisible immeasurable task,though nearly impossible to verbalize, is what I am doing now.

Steve and the puppy pile (Mariya, Elena and Jack)

Steve and the puppy pile (Mariya, Elena and Jack)


Elena’s new dog Rufus–a great source of delight and trouble.


To Life, to life, L’chaim!

Food as Medicine

Food as Medicine

I have written this blog post over and over, trying to write the surprising essence of what I have learned in the past few years. Cancer toppled my former regime as effectively as a military coup and the re-building of my life has been profound on many levels. Cancer was a wake up call and a gift. Until recently, my focus has been on healing my body. Now I understand how deeply I’ve been changed psychologically. The old story “The emperor has no clothes” keeps running through my head. Once you start to see that, you can’t stop.

I got a deadly disease that could have killed me very quickly. The chemo stopped it and the transplant, (God willing and fingers crossed) gave my body a chance to start anew. I know that. I am deeply grateful to be alive. That’s true.

But there is more of the story. This is the beginning of my exploration of all the things I experienced first hand but was too sick to express. I can’t just go back and do business as usual. Because it turns out that means… asleep at the wheel.

Friend Gary's viking funeral.

Friend Gary’s viking funeral.

Even at its zenith I was aware that I had more (way more) drugs than I needed or wanted because they were the only weapons in the arsenal. Literally anything natural was regarded by the medical world with much suspicion. Now I reflect back on this and recognize that after this long and lonely battle, I regard much in the allopathic medicine chest with the same kind of suspicion. So here we have patient and doctor who speak different languages. I can’t even say our goal is the same… because while I believe that most doctors are essentially good people, who genuinely want to help people, as a profession, they have been “Bought” by the pharmaceutical industry.

As my daughter Elena and I drove away from the SCCA the last time, we tried to put a voice to what we both observed. It felt almost, well, heretical to say it out loud. But there is no denying that cancer is big business and that if people were able to treat it with natural means the immense cancer industry would come crashing down. We didn’t read that anywhere, we witnessed it.


Being a Whitely Center Scholar for a month gave me this amazing place to work.

In a teaching hospital, you see many young interns and residents, trailing after the high ranking “attending”. I remember witnessing the unintentional sharing of more than medicine. Compassion fatigue was one.

I had observed this in my own small town medical clinic. Doctors are crunched into inhuman schedules where the average time to listen to patient is 18 seconds and the average visit is under 7 minutes. No wonder this system, which doesn’t work for patients, also doesn’t work for doctors. I felt sorry for them and wasn’t surprised to read about the high suicide rate of doctors.

For now, I feel like I am changing so fast that I hardly know what to say. If I get a broken bone, or need surgery, I will definitely go to the allopathic world. For anything else, I will research and go to “alternative” healers to learn how to help my body heal itself. Yes, even for cancer. I don’t know how I would react should I have a relapse. Would I do it all again? That question will have to wait for its answer. By even thinking about a relapse, I would be moving against my health because the mind-body connection is that powerful.

Friends are good medicine.

Friends are good medicine.

Since cancer and because of cancer, I have learned SO MUCH about the role of real sustenance and deadly stress. I had to fight a sense of betrayal at first at about what was never mentioned. But then… they don’t know. Bottom line, I am only sure of one obvious aspect of our foundering health system. Which is how critically important YOU are. YOU need to be on the medical team. YOU can’t hand power over completely to a system that knows so little about food as medicine. YOU need to ask the questions they don’t want you to ask. YOU need to connect the dots they can’t connect because they are specialists and you live in a whole body. YOU need to take control of the power of your own mind. YOU need to research, challenge, guide and assist. I’ve had people tell me they don’t want to do this because they didn’t go to medical school. But maybe that’s the very reason YOU are so important. YOU didn’t go so, you are free to consider things that they don’t (or can’t) think about. YOU need to question the automatic use of drugs and question how a medical system that thrives on the use of drugs can possibly give you any other solution. It simply isn’t profitable. This system also demands doctors meet a quota, forever shortening the time to assess your whole health and life. Who can fill the void? YOU and a host of “alternative” (why are they alternative? Ask yourself that.) practioners that connect food to health, mind to body and have tools that are both ancient and brand new. You have to find them. I will try to give more information on that as the blog goes on.

Nature as medicine

Nature as medicine.


  • My health is good. The best news is that I don’t have to talk about CMV any more.
  • I did not have to get the Pericardiocentesis, a “lovely” procedure where they insert a catheter into the jugular and thread to centimeters from the heart to drain the fluid. I credit this to my naturopath who flooded me with critical nutrients and to my own gamely fighting body saying NO. Could it have been the return of a healthy immune system? Something drained the effusion naturally. Something healed the CMV. My blood counts have nearly returned to normal.
  • If you haven’t ever been anemic, you might not know how amazing it is to be nearly normal. My naturopath told me I have Macrocytic anemia – when the average volume of the red blood cells, known as the Mean Corpuscular Volume (MCV), is larger than normal. So what’s wrong with enlarged red blood cells? There are all kinds of issues from anemia of any kind. It is a very bad thing to have long term because less oxygen carrying capacity mean less oxygen to crucial places in the body like the brain. Thus, I asked repeatedly about anemia to the nurses and doctors. (But it’s not cancer and won’t kill you immediately, so I didn’t get much information.) They told me very specifically not to take iron but not why.
  • The cause behind Macrocytic anemia is caused by lack of folate. I think they did check my folate level a time or two, but it was the naturopath who discovered I need a different methylated form of folate (along with millions of others), which I now take regularly.
  • My naturopath pointed out that I had kidney damage. This rarely explained or interpreted information is neatly tucked into the blood test on a line called GFR. According to the National Institute of Health: “…measures how much blood your kidneys filter each minute, which is known as your GFR (glomerular filtration rate). This shows how well your kidneys are working. A GFR of 60 or higher is in the normal range. A GFR below 60 may mean you have kidney disease.”
  •  I already knew the link between my kidneys spilling lots of protein and heart effusions. Those numbers have been cut in half thanks to the kidney healing humble dandelion, Tulsi and burdock. My blood pressure has remained high. Bad for kidneys. The drugs for high blood pressure say “may cause kidney damage”. Eyes crossed. Rather than take yet another drug to damage my already injured kidneys, I am taking hawthorn and working on reducing the cortisol stress hormone. An example of participating in my medical team :).

 Enjoy this season of Persephone. Life is extraordinary.

Take every chance you can to hold a baby. This is sweet Larkin.

Take every chance you can to hold a baby. This is sweet Larkin.


Warm Beaches, New Ideas, Ongoing Challenges


We did it. We went traveling. We’d planned a nice long snowbird trip. My illness stopped that notion. But it didn’t say we couldn’t go… come back and get checked out… and then go again. And that’s exactly what we did.


Clowning the Corona commercial…

The siren call of a warm summer beach was incessant during our white cloud winter days. We didn’t even try to resist. As soon as the CMV numbers went down, we made reservations. By the ninth of January, we were walking down that beach we’d dreamed of. Sometimes, expectations don’t match reality. But that warm water and smooth sand were exactly as we remembered it and the warmth of the sun healed immediately and deeply.


New moon, campfire. Add Ocean and tacos and we are perfect.


What we did on that sweet Mexican beach was not remarkable. We ate at seaside restaurants, protected our feet from the nocturnal sand fleas, and shuttled between sun and shade as needed. At night we watched the new moon trailing Venus slide into the sea. Fishermen swirled nets like capes into water, capturing baitfish. Pelicans, blue footed and brown boobies, Arctic Terns populated the space just above the ocean surface, spending each day in a languorous dance of gliding and acrobatic flying, punctuated by headlong dives into the water. Mexican families seem to love to spend time at the frontier of land and wave, spending their time playing with sand, burying themselves and each other,  laughing as they do so. This activity I did my best to emulate, as it struck me as such a gentle and joyous way to enjoy the beach, no toys required. Steve calls me Curious George. He says his dad was like that staring and rubber necking while he was people watching. I confess, I am that person too. The rewards of such an intent pursuit are great… like the sight of several lean healthy women some years my elders emerging from the sea after an hour bouncing around in the water together was a new definition of mystic sea maiden. It filled me with hope and admiration.


La extended familia

We had friends and our daughter with us, so conversation was a major activity. Everyone walked so much it wasn’t even worth mentioning. You walked to get to where you were going, and then some cause it was so beautiful… like the nightly sunset walk.


Yoga was a daily project. Our music was a melody of surf, dogs barking, motors, voices, roosters and the monotonous and somehow enjoyable chant of the produce man and the cadence of “El Gas!” In the north, the focus is indoors, here it was intermingled with scents of every kind—salty, sweet, acrid, floral. The open architecture led into palm fronds. In the balance poses, I would center my focus on one still cloud in a robin’s egg blue sky. In Shivasana, or corpse pose, we laid on our mats, bare skin brushed by salty breezes.

In the evening, during the walks, we picked up plastic. It was everywhere. This became quite philosophical activity. I thought much about my talks and reading about Forest Dwellers. Staying healthy, going to the beach for fun and relaxation, yes. Must be done for healing. So picking up trash becomes something to be done in a relaxed manner, so as not to lose all the benefits that brought us here.


My major purpose in going to Mexico wasn’t adventure or to learn Spanish. We only dared take two weeks away from the doctor and weekly CMV testing. I have learned to have goals that are not larger than life, but life itself. My goal was to build “chi”, the internal energy that fuels our breath and blood. For that, I needed to exercise-gently. Stretch tight muscles and absorb the heat. Eat delicious fresh food. Rest. Journal, meditate and write. Absorb beauty and give thanks. Find some small service. Contemplate the Face of the Divine in the ocean. Live an elemental life outdoors. Read a good book. Enjoy. I managed to check off every one of those.

I learned the term Hypnagogia— the experience of the transitional state from sleep to wakefulness. Some places embody that state. This little town in Mexico did just that.

Then we came back, walked through the decision once again of whether it felt safe to go. Decided yes. And the trip to Maui took shape.


Lahaina’s beautiful banyan tree


The sacred valley of West Maui

Aloha. There are many definitions of this word but the one that very clearly states our experience is “ let there be friendship and love between us.” We were lucky to have friends in Maui by friends who embodied this meaning.  I am deeply grateful to have had the opportunity to witness this place, fighting for its identity, on a magical island in the middle of the Pacific Ocean. Steve and I used our little used rental car to travel all over the island, and we experienced some wonderful hikes in the mountainous and sacred areas of the island.


The freezing winds of Haleakala


Green Sea Turtles

The effort of Maui to retain its culture in the face of extensive tourism is one worth noting and honoring. This will echo in our hearts for a long time. There is much to feel and notice on Maui, if that is what you are doing. Like on Ireland, I felt this island as the body of the Goddess. I heard the primordial voices of the Elders guiding those who listened. There is a sense of waking up on Maui, right alongside the trance of pleasure. It is what keeps Maui from being an adult Disneyland. This feeling of waking up and the Divine Feminine, surrounded by the mighty Pacific Ocean made this trip very special.


But this isn’t to wander off on my reflections of our travels. I stayed pretty healthy in Mexico but it didn’t stay that way. I noted in my journal before we left that I felt a heaviness in my chest. That feeling grew and hindered me on our  hikes. I seemed to be less able to hike uphill without a real effort and a recovery after that sometimes took more than a day. In between, the GI tract kicked up too, so that I experienced a day or two out and about on Maui, and then a day to rest, as in could barely move. My appetite would swing from zero to avid daily. When the “vog” (mixture of volano ash and fog) came in from the Big Island the chest heaviness settled in more deeply and went into a cough, fluid in the lungs and fever.


Bamboo Forest

So, our return from Maui has been tarnished with getting sick with pneumonia, and discovering that my pericardial heart effusion (fluid around the heart) had grown, and it was affecting my activities. Even now, with the symptoms of pneumonia healed, I still feel the heaviness and the cough every time I bend over. Which has led me…right back to the SCCA and to UW Cardiology.


On a lonely trip back to Seattle a few days ago, I met with the Head of Infectious Disease at SCCA. She took my “case” to her entire team last week to decide what the next steps should be for the ongoing CMV issue. Always good to note you are confounding even to the doctors. Meanwhile, “regular folks” are always confused when I try to bring up CMV. They just want to know that I am cured of cancer, and I am indeed cancer-free.

Yes. Huge gratitude and appreciation. But by now, my immune system has been so damaged with the antivirals, that it may need some real creativity to repair it. Long Term Followup at SCCA is very difficult to negotiate, due to their policy of constantly rotating physicians. So when this physician assured me she would stay with me until we’d thoroughly dealt with CMV, it was remarkable. On her recommendation, I will double my dose of the anti-viral Valgancyclovir to 1800 mg, for three weeks, then go down by half, and then… wait and see. This Infectious Disease doctor (not giving names) readily agreed to work with my local oncologist AND the Naturopath. That has got to be unusual. The allopathic approach has come up against a wall. They don’t really know what to with me. Whatever course of action is next will have to be different from what I have been doing, so they are open to a new approach. While I am still hammering the virus with anti-virals, I will also follow the Naturopathic route to dealing with strengthening my immune system and dealing with anemia. This idea of actually having a team (all women): a local oncologist, a specialist and a Naturopath has me feeling more optimistic than I have felt for a long time.


Eat local

By contrast, the cardiologist meeting was a bit of the dreary same old thing where I have very little time with the ever-busy doctors and virtually no time for clarification or questions. Despite that, I felt confident with them. The echocardiogram clearly shows a moderate to large effusion around my heart, which also causes my blood pressure to be very high. The fluid around my heart needs to be drained, they told me. The cause of the fluid is not known, but may be tied to the chemo pill, Dasatinib, which I have taking twice daily. This is an important drug, and one I don’t want to just give it up, but it may be the culprit with the excess fluid. Or it may be that my kidney has been injured and is spilling protein and that releases the fluid, in some way I don’t totally understand. And then, it could be linked to the pneumonia. The last time they found an effusion, it was in coincidence with last year’s pneumonia. I won’t lie. This heart procedure is scary to me. I can’t do it until April, so I am quietly hoping that things will settle down in the meantime.


It’s a lot—these wonderful mind expanding trips and the perplexing and maddening doctor/medical system. I came home with a commitment to Total Health. I think I have gone along, thinking “partial health” is fine and I am doing “good enough” for what I’ve gone through. This is reiterated to me by many well-meaning people in their desire to be empathetic. But Partial Health is not good enough. I want to see myself as on the road to Total Health. I don’t know if that sounds extraordinary, but it feels that way. It means giving up the Matrix where I have been operating inside the world of cancer, cancer treatments and allopathic medicine. It means going somewhere inside I have never been before. This was a gift of the two places we visited in the beginning of 2015! More on this as it happens.


Thanks to all

Thanks to all who have sent your warm and supportive comments to me! I haven’t replied to each one but I read them all and so appreciate them. In great gratitude for your friendship,

Like Thieves in the Night, We Go

WP_20141225_008January 7, 2015. We have come out on the other side of winter solstice, and know that the hours of daylight are lengthening, though we can’t feel it quite yet. The CMV counts are down to “8” copies of the virus and the symptoms that raged through me in November and early December are gone. Not forgotten, certainly… but the will to be healthy is strong and I make it my business to build a wall between that time and this time.

I spent a lot of time with my journal this year, and it reflects my travels to Alaska, around the islands, and to Portland –along with notations from visits to the doctor: “CMV numbers up, start back on gancyclovir”, “Heart effusion size is reducing”, “endoscopy shows moderate inflammation”, “lymphocytes up”, “anemia has returned”, kidneys spilling protein” and so on. In between I write notes from Naturalist classes, prescriptions to myself (more exercise! Less sugar! Etc), and references to adoptive cell therapy, which is the latest idea the SCCA is suggesting—that I go to Houston and get a T-cell CMV-specific infusion to help my body fight this pervasive side effect of losing my immune system.


Elena, Mariya, Tickla, Christmas 2014

At the end of the 2014, I re-read this faithful journal. And once again, the analogy to The Hobbit and Lord of the Rings seems to fit. Put aside any critic’s voice about the movies…that’s not what I am talking about. I am talking about actually being the Hobbit, whether Frodo or Bilbo, though Frodo’s journey seems closer to mine. Loving the simple joys of life and home, pulled out into a dark and dangerous passage through threatening landscapes, longing for the beauty and comforts of the Shire, but going forth because it’s the only thing that can be done. And triumphing. The littlest being in Middle Earth, triumphs. Saves the whole kingdom, really. For me, the kingdom of Shann Weston was in grave jeopardy. The little Hobbit soul triumphed.


Us and Will, Christmas 2014


My handsome husband

And now, like both Hobbits, I recount my adventures and look back on the journey and see the unlikely fighter that hazarded the heat of many battles. The Hobbit is a survivor. When I looked back on November’s sickness, I wrote “The Hobbit falls down the long scary ridge of loose rock. And it is a hard hike back up. I am still not all the way up at the top but I am on firm ground, walking by myself.” When I think of my 64 amazing years on earth, I think this episode is small, compared to that.

I see all the ways now that this illness mended and healed as well as tore through and damaged my life. So much of this was because of Steve, Mariya and Elena and my friends. Yes, I had my companions through the dark landscape, like Frodo. No one could do it by themselves.


It is time. Before anything else happens, we are off. Like thieves in the night, I said before. Off we go to Mexico tomorrow! We had a wonderful Christmas with the family and many walks and visits with friends. But the dark, cold days are rough on this still healing body. So much time inside. We are infinitely pleased to be able to go, even on a shortened timeframe. To sit in the heat and soak up its curative energy, walk on the beach along the magnificent ocean, and watch sunsets with friends, that’s what I most definitely need now, after nearly two years of the fight, and way too many doctor visits. I love the elemental life—close contact with the earth and sky—and Mexico is the expert in giving me that.