Life in the North is so much about a sedentary life in an interior world. I wanted this winter to be different. I longed for the color, vibrancy and warmth of a more tropical location.

We made plans, of course. Steve and I sometimes learn slowly. Big Appetites create big plans. Last year was so hard… and we often only knew the confines of a little house in Seattle and the SCCA or the Hospital. So we planned a big trip—just like the one we planned when I originally got sick with leukemia. We would go to Mexico for Christmas. The girls would join us. We would rent a house and spend the holidays in a small village with a magnificent beach and stay all through January. We would visit relatives in Guadalajara, old times in Puerto Vallarta and see the changes in Sayulita. These plans had us leaving 4 days ago.

All things seem possible in October.

Trip planning took place in October. Health was stable, I was working with a personal trainer, working out, doing push-ups, taking long walks and feeling fine. Then came November. About 5 days in, colitis hit, on the heels of a weekend in Portland. Who knows exactly what the trigger was!

My life saving view

Here I will interrupt myself for a little rant. If ever you are in a situation to get weekly blood draws to check something where you need a number, like my CMV counts, and they are sending them to a lab where you get back a note that says “CMV detected, below the level of quantization.” And that level isn’t measured until it gets to be over 2000. And you are waiting for a number that requires action if it rises above 150 so this doesn’t make sense but NO ONE seems to notice until finally, you, the patient, challenge this and at long last they send it to the right lab where they measure much more specifically. And you wonder why you are the one to notice and correct this… remember this story and remember that ultimately you are the one who really cares enough to check and challenge and fix such things. The health system is full of such missteps. The patient is often the only one to notice it. If I’ve learned one thing thing it is this: Stay alert to what is happening. Ask questions. Challenge. Explore alternatives. I apologize for the conundrum. I am asking you to do this and to surrender to what is happening at the same time. It’s just the way it is.

Like the inside of my body

Back to “then came November”. After our fun weekend excursion, colitis hit with the power and suddenness of a derailing freight rain. That pain was like… well, childbirth is the closest example I have. On a scale of 1 to 10, they ask me… 9, I answer. Pain is all I knew when that cramping began. I folded in over myself, tucked a hot water bottle close to my belly and the days passed with a mixture of hurting, little intermissions, medical tests, doctor visits, and fatigue from the above. The throbbing wandered all over my GI tract, stomach, colon—spread to kidneys, took up the center of my existence. Once again, diarrhea, vomiting and anorexia (aversion to food and liquid) accompanied everyday. The weight and muscle I had carefully gathered over the summer wasted away. The verdict? After so many tests, I lost count, it was the old adversary: CMV Colitis. My numbers were low, compared to the counts numbering the thousands that I experienced other times. But for some reason, the CMV devil was playing havoc with my system.

Jack, my companion in resting.

The doctor sent me to Anacortes to get a peripherally inserted central catheter (PICC or PIC line). I wear it still, from my upper arm into the vena cava just above my heart. Twice a day, I attach a “grenade” of the powerful antiviral known as Gancyclovir. In an hour, it releases the medication into my bloodstream. The side effects of this medication are the same as the symptoms of the CMV Colitis. Yes, you read that right—all the GI effects you just read about are the same as the side effects of the drug. I didn’t know if I was coming or going. All I did know was the couch or the bed, the hot water bottle, an occasional reprieve, and counting the hours in the days.

The family rides in like the cavalry.

Slowly, so slowly, things improved. By the end of November, I was upright but weak. Mariya arrived, much to everyone’s delight as I began the process of healing once again. The ground I’d gained was lost so quickly. Now, inch by inch, I fight to bring it back. The CMV counts have stubbornly come down. The GI symptoms have obstinately abated. Through the misery of the worst of it, I recognized a stark fact: This was an antiviral that tore down the very immune system that was struggling to survive. So, I added a few of my own medications.

By TG DAY, I could sit up for dinner, though I needed to lay down as soon as it was over.

I started taking Rick Simpson oil, or Phoenix tears—a high quality hemp or cannabis oil at night for sleep and healing. Further, I used medical marijuana to help with nausea and the all important healer: appetite. I began a regime of medicinal mushroom extracts, from the company that mushroom expert Paul Staments founded, to give me energy and build my immune system. Once I could move again, I also partook of every “Complementary” treatment available to me—from foot reflexology to reiki to massage and acupuncture. And I kept walking, everyday I could.  I am more convinced than ever that the tools of the medical establishment are often the wrong tool, not supportive of the whole system.

Aunt Maria Elena’s painting

Ultimately, from all of these things… my tough body pulled itself together. I have a painting from my Aunt Elena that represents this journey I have traveled. I am the donkey, unsure, reluctant, too unsteady to carry my own burden. My spirit helpers carry the load for me, push me across the river to the shore where healing can begin. I love this painting and look at it everyday for what it tells me: there are helpers all around me.

Beautiful daughters.

Elena’s birthday

I wake up every morning in the dark longing for warm bright beaches and pelicans flying. As the day comes into light, I write until this angst is gone and focus on the many things of the world that are possible. Today, I read the profiles of orphan elephants so I can support the critical work of the David Sheldrick Trust http://www.sheldrickwildlifetrust.org/index.asp.  My small donation will represent a consciousness on this side of the world, supporting and cheering on their care.

I have so much in me that wants to go forth and do this kind of work. It may never come to pass. Only time will tell. But I can celebrate this December. This Sacred Pause of time on the cycle around the sun. I remind myself that I am a Winter Solstice baby, after all. This is a vibrant and a holy time with the girls here. Our little home is a hubbub of projects, cooking and ideas. Steve and I are deeply blessed and full of gratitude.

We are cautious now and taking it one day at a time. The planned for trip is on hold until further notice. We still have hopes for January. But we are not yet planning. If the coast looks clear, we will go like bandits in the night.

The only checkpoint of fame that I know of was Checkpoint Charlie, so I looked up the meaning before naming this blog entry.

From Google:

a barrier or manned entrance, typically at a border, where travelers are subject to security checks;

a place along the route of a long-distance race where the time for each competitor is recorded.

a location whose exact position can be verified visually or electronically, used by pilots to aid navigation.

Somehow Checkpoint SCCA seems symbolically perfect for last week’s adventure. It marks the border of leaving cancer, the route where my long distance race is recorded, informing the chart that is me when I am at SCCA. From this chart the doctors, (pilots) verify the presence or absence of leukemia, GVHD, CMV, and the health of renal and liver function in my body.

It took a week to go down to Seattle and do the tests, one after the other, another week to process the experience before I could talk about it. Perhaps it’s aging … or increased sensitivity … but I’ve noticed the pattern of trauma, especially subtle trauma, looks like this: Powering through the event. Taking the shocked self home. Repairing and nurturing the inner body back to wholeness.

Blood draw!

By 11:30 AM Monday, I had already had the critical in-depth blood draws, and a bone density scan, important since prednisone can have long lasting effects on bone health. My skin really got the scrutiny on the first consultation, as they looked for GVHD like rescue dogs searching out an important scent.

Then came the biopsy. I had asked for sedation, envisioning an effect much like the colonoscopy. You know: mid-sentence . . . konk out. Wake up when it’s done. No such luck. There are many wonderful things about the SCCA. Pain management isn’t one of them. Apparently there’s a cap on how much sedation you can have—which perhaps typically is just below the threshold of truly sedating the person. You might guess the result—still hurt like hell.

Yum, I mean…um, I love the view at Greenlake.

Afterwards, I walked around Green Lake, gulping in breaths of normalcy and fighting back the waves of memories as I drove around familiar neighborhoods. A feeling of loneliness filled the car, of a time when Isolation was the operative description; when it wasn’t safe to be out, and there was no energy or desire for it anyway . . . . so many hours spent in seclusion. Thankfulness followed the lonesome songs playing in my heart, for all the bighearted time given to me by each member of my family.

On Tuesday, I went in for a routine mammogram. We all know what this is, right? This is where the technician grabs your bare breast, yanks it under the mashing plates, then squeezes them together tight while you hold your breath and try to stand still. Millions of women do this. Hardly ever hear a complaint. It’s amazing.

My week in Seattle mixed the funny intense “shopping opportunities” of an islander suddenly presented with the limitless choices of the big city, together with the shudder and satisfaction of negotiating city traffic. Despite the waves of immense loneliness in the thick of so much humanity and activity, I was able to let go and enter the river, finding pleasure in being part of the human parade at Greenlake, the waiting rooms of SCCA and UW Hospital, even at REI and the Mall. When I needed them, the islands of warmth and hominess appeared, a welcoming word from a barista, a salesperson who wanted me to find the best hiking shoes for my escapades, an ER Nurse who used a warm pack make an IV injection nearly painless. Each evening after ups and downs of being in Seattle again I needed sanctuary, and received just that from generous friends.

I made three visits to the Apple Store to get my I-tunes and I-photo straightened out. Love/hate that place. It is an extreme immersion into a technology that threatens to overtake our lives but also makes it more enjoyable. I am not a Luddite. I kind of love my cell phone. Please don’t judge me by that. At least I admit it. It used to be if you were over twenty and walked in to get help on your computer, the young male techies would treat you like a doddering fool they could hardly stand to be around. What I saw in the Apple Store wasn’t like that. It gave me a needed diversion from the SCCA.

On Wednesday, first up was a consultation with Infectious disease how to deal with CMV. This reactivated virus has had its way with me. After all of this time dealing with it, it still hovers around me like a dark shadow. They decided to take me off the CMV medication to see what happens. It was a sobering visit, but so far so good: the virus is detectable in my system but not threatening.

Back home…. goldfinch.

Next up was Pulmonary function. I hate this test and found I was in good company. The technician told me that people have told her they hate it more than the bone marrow biopsy. I can’t say that but it gives you an idea of the general aversion for it. The test mostly consists of blowing into a tube with nose clips on, holding breath, letting go, then deep breath—all of this accompanied with the technician’s expressive conducting. “Now breathe in! All the way all the all the way . . . EE EEE! And now let it out further further further deeper deeper!” This was made a bit easier by the creative animation of bowling balls—hey, when you are blowing and holding and inhaling, trying to get the pins down by an elongated breath at least distracts in a good way.

On the digital chart in front of us, she confirmed my details. “And your ethnicity?” She drew a line down the possible options. I felt my jaw set. “Is there a place for ‘other’”? I asked. There wasn’t. “Well, can you write in Mexican Scottish?” Without any hint of irony, she did. Every time I was finished huffing and puffing my digital chart would come up. And every time “Mexican Scottish” made me smile. My father Robert Bruce Weston and grandparents Marian Cathro and Roy Weston would not have recognized being Hispanic, whatever that is. I could have asked for Scottish-Irish-English and Spanish-Native American-French. I just can’t lump these nationalities in one easy package. I am reminded again about phenotypes and genotypes. Phenotypes are what you look like. Genotypes are what you really are. Those of us who look predominately more like one parent than the other must fight to keep the invisible parent in their heritage. I know how Obama must feel.

Lake Union, as seen from the SCCA Transplant Floor

By Thursday, Steve had arrived to make a visit of his own, to the Seattle Arthritis Clinic. We went together to visit our first oncologist, Dr. Walter. He was the attending when I first arrived at UW Hospital. It was my lucky fortune to have him arbitrarily assigned to me back in those dark days. I don’t know if it’s cause he’s Swiss or wears bow ties or that he is never ever pompous, not even a little, but we both really wanted to see him again, and just get his read on it all. We learned that the drug Dasatinib will be in my life for as long as my insurance will pay for it. The tests go two years out. After that, it’s unknown, and I will continue to be the human guinea pig for finding out.

With the stem cell transplant, I lost the protection from all my childhood vaccinations. My one-year anniversary was the time to get the immunizations once again. Within the space of five minutes, I got 8 shots, given in arms, thighs, and hips. two different types of flu shots, Hepatitis A and B, meningitis, polio, pneumonia, and “Tdap” (tetanus, diphtheria, pertussis). Ouch. I was sore for many days after.

Snake energy from the top of M.t Young.

Finally, it was time for my final consultation. Drum Roll. “9 out of 10 positive news”. The bone marrow biopsy and specialized blood work shows no sign of leukemia. It’s 100% donor origin. My immune system is 100% Mariya’s. There’s no Graft vs. Host disease. The lethal Philadelphia Chromosome was no where to be found. Celebration! Daughter Elena asked me if I was a miracle. No, I said–I was tough. I had amazing support. And it was the right time and the right place. That was the miracle.

And . . . the bad news… ? Of course, like a report card, you linger more on the one “C” than the “A+”.  The old foe, CMV. Once re-activated, it just won’t go easily back into the stable. Most people with healthy immune systems spend 70% of its energy keeping CMV down. So, we are still watching to see what we have to do. And my kidneys have been spilling a significant amount protein into urine. Protein is the holder for fluids in the body, amongst other things. Protein spills like that lead to things like heart effusions. “Probably from medications” or “Maybe from the diabetes” brought on by the prednisone. This is unsettling news. But there is nothing to be done other than to live a kidney-healthy life. And hope that I can stay away from harsh medicines.

Life in the heart of the Salish Sea. Autumn!

Every year the Fred Hutchinson Cancer Research Center sends out a questionnaire as part of their Long Term Follow-Up Program. They then send out the Thoughts and Comments for each year. It is rather astonishing to read about other people’s experience with stem cell transplants. Some go through the hard times and come out healthy and sunny. Many don’t. It is, in fact, a sobering document. Since my records preceded and followed me everywhere I went, I had comments from providers like “oh! You look better than I thought you would, after reading your chart.” I had a long hard march, but in the scheme of things, I just feel lucky, lucky, lucky. It could have been so much worse. It was so much worse for many.

I’ll end with my favorite quote from that document, from a transplant survivor the same age as me.

“Being diagnosed with cancer of the blood was not in my life plan, and to be honest, it stinks being a cancer patient. Being a cancer survivor is something else altogether. Like Dr. Seuss said, “oh the places you’ll go and the people you’ll meet.”

Now that’s something I am looking forward to.

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And from Enya, the music that accompanied my Seattle driving.

Who can say where the road goes
Where the day flows, only time
And who can say if your love grows
As your heart chose, only time

Who can say why your heart sighs
As your love flies, only time
And who can say why your heart cries
When your love lies, only time…

Autumn comes 2014

First month of the cancer fight 2013

Argentina 2011

On September 27, I was asked to give the keynote talk at the Relay For Life in Friday Harbor. Here is the talk:

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Can I take 10 minutes to tell you the story of becoming one year cancer free?

Like all of us, I never thought cancer could or would happen to me. I was a green smoothie drinking, vitamin taking, daily walking Nature Lover with good friends and a close family. I hardly ever got sick. Three months before I came down with cancer, my husband and I went to the bottom of the Grand Canyon and back the next day, barely breaking a sweat. We had big plans in motion to go hike the Inca Trail to Machu Pichu in Peru. Looking out at the audience now, I am sure many of you know this scenario—your life before cancer and then, how that world falls away with the Diagnosis.

Signs of the season 2014

Trying to sort it all out 2013

In February of 2013, I suddenly just didn’t feel up to the two hour walks I’d been taking. Overnight, I’d lost my usually hearty appetite. I felt glued to the couch. I was lucky that my local doctor knew me as a normally active woman or we could have wasted precious months on the initial testing. Fortunately that planned trip to South America spurred both of us into a determined focus to get to the bottom of my fatigue and malaise. He began with the less terrifying possibilities like mononucleosis and kept testing until he arrived at an inescapable and most inconvenient truth. I had a blood cancer. He sent the sample to the University of Washington to be sure. The verdict came back without stopping to find out if it was something we wanted to hear. I had Acute Lymphoblastic Leukemia. Acute means that without intervention, this disease had the potential to kill me within a month.

Seasons changing 2014

I was off the island and into the UW Hospital within two days of that finding. A PA who first examined me stated without irony—“It’s a tough disease. But this is a good time to have leukemia”. I remember that comment was somehow so encouraging though I had no idea what he meant. Soon after, I began finding out — when I immediately benefited from the life-enhancing work of Dr Robert Hickman.

Dr. Hickman worked at the Seattle Cancer Care Alliance in the 1970s, where he was a member of the Hutchinson Center’s transplant team. At the time, intravenous nutrition, blood draws and delivery of chemotherapy were difficult challenges for his patients. Dr. Hickman developed a technique to tunnel a central line under the skin and into a large vein nearby. If you’ve ever had blood taken numerous times, you can imagine how remarkable this would be to a patient who previously only had the choice of multiple sticks from a needle. Talk about improving quality of life!

Jack’s first apple harvest 2014

Hickman line cleaning 2013

I wore my Hickman line for nearly a year, receiving six hospital rounds of the hard ball players of chemotherapy, as well pre and post-transplant chemo. I also received seemingly countless blood transfusions, anti-nausea medicines, antibiotics, essential nutrients, blood clotting agents, Vitamin K, platelets and even water when I couldn’t keep anything down. I was able to do a lot of this at home, thanks to the Hickman. I got my stem cell transplant through my Hickman line. It was a complete game changer for us, and I will always be grateful for how it eased our way.

Right after my first bone marrow biopsy, they told me that I had the dangerous “Philadelphia chromosome”. This was usually a death sentence just a few short years ago. First discovered in 1960, two chromosomes in the invisible working of the body create a poisonous new merger. This unholy union sends a signal that triggers cells to multiply at an abnormally high rate.

Imatinib is the non-brand name for Gleevec

It took over 30 years of focused scientific research to determine how to stop this uncontrolled cell growth.Just recently, I was reading the Pulitzer prize winning book The Emperor of All Maladies, A Biography of Cancer which begins and ends with Acute Lymphoblastic Leukemia. There are many stories in this book but most compelling to my situation was the story of Dr. Brian Druker, genetics researcher and oncologist at Oregon Health and Science University. Dr. Druker discovered how to break the fusion that was causing life destroying cell growth for patients who had Chronic myeloid leukemia (CML), a disease that used to kill 100% of the people who had it. And he was able to do it without harming healthy cells. In a reluctant and skeptical pharmacological industry, Dr. Druker single-mindedly sought out and found one company willing to collaborate to produce the drug Gleevec. Since its initial approval in 2001, Gleevec was approved for use in patients with gastrointestinal tumors and for patients with leukemia who had the Philadelphia chromosome. So when that PA said I was lucky, indeed I was, because Gleevec was available to me.

Traditional Mexican Dancers at Relay For Life 2014

2013 Hospital Visit # *&%$#@!!!

We remained in Seattle, with the admonition to be within 30 minutes of the hospital. Once, after a class three hemorrhage, I was rushed, nearly unconscious, to the ICU, where I received 5 pints of red blood cells and two of platelets. A person my size only has 10 pints or less. They poured it into my body so fast I had to be under a special hollow blanket filled with a constant flow of warm air. And when they were done… I sat up and felt fine, hungry and ready to go. Such is the power of blood.

Most cancer patients need blood transfusions, some more than others. Frankly I lost count of how many pints of blood I received. Every two seconds someone in the U.S. needs blood. And there is often a shortage. It is estimated that though 38% of the U.S. population is eligible to donate, less than 10% actually do each year.

But my life was saved, over and over by so many unknown donors, people who just wanted to do a good thing. I can’t do justice to the gift I received. All I can do is to say thank you.

Poster for 2013 fundraising

2014 Just feeling goofy

On the night when this wonderful community held a fundraiser for us, Steve and I were back in the UW hospital where I was getting yet another blood transfusion. That’s a wonderful thing about community, the way it gathers up and lends a hand to someone in need. While my friends and family gave of their hearts and wallets to help us, we were doing the only thing we could do at the time, fighting to save my life.

Stem Cell transplant 2013

On August, 21, 2013, I got a stem cell transplant. We had worked with the Seattle Cancer Care Alliance and Fred Hutchison Cancer Research Center for months trying to find a donor. There was no traditional match. But Fred Hutch had been successfully treating people with both cord blood transplants –that is, blood from the umbilical cord of a newborn, which is filled with stem cells, and haploid transplants—where they take stem cells from someone who has half of the recipient’s chromosomes. That meant one of our daughters could be a donor. Hmmm… I remember thinking—what a choice! Who would be my donor? A baby? Or a daughter?

Eventually I decided daughter, as the current research isn’t yet sure about which is the best choice. Haploid donors were the newest possibility in the transplant world. In the last five years they perfected a way for our daughter to donate stem cells and for me to receive them without getting dying from graft vs. host disease. I celebrated first my re-birthday this last August.

RIP Sweet Marta

Relay For Life 2014

About then, it was apparent that one of my very dear friends was going to lose her battle with Cancer. She had clear cell uterine cancer, an illness so rare they have not yet discovered much that will stop it. I was too sick to go see her, so we had to carry on our own battles, which she ultimately lost. I was isolated in the post-transplant world, with a host of immunosuppressant drugs that became my daily companions. One of them, Tacrolimus, made my hands and sometimes my body shake. At the same time, I had to give myself insulin shots in the stomach 3-4 times a day to combat the steroid -induced diabetes. With my hands shaking, I nevertheless learned how to give myself the shots quickly wherever I needed them. It was a great metaphor and a teacher of the things I thought I couldn’t do but did. We all do things though our hands shake, as we navigate Life—facing illness, the scary things we reveal or confess to, bringing new life into the world, caring for our parents, and saying goodbye to loved ones.

Somewhere around Christmas 2013

After 11 months, I was able to come home because of the new cancer care center here at PeaceHealth. It was wonderful to be with devoted skillful nurses and an excellent oncologist who came once a week from Bellingham. I felt like I’d landed in –well, not exactly paradise, but in a warm and supportive environment that both Steve and I sorely needed about then. After 9 months of life in Seattle, we were battle weary, exhausted and shaken. But because everything was so precarious, we also needed to be able to get back to hospital quickly if an infection threatened. On the night of December 17 such an emergency arose. Dawn Alger, whom many of you know here detected an unusually low oxygen level during the usual blood draw. I remember her saying kindly but firmly: “No, Shann–you couldn’t go home and just hope for the best!” A CT scan at the Friday Harbor hospital revealed I had pneumonia and a fluid effusion around my heart. This prompted a whole lot of consultation between the ER docs from Friday Harbor, the Oncologist from Bellingham, and the Oncology team from UW Medical in Seattle, who decided collectively to airlift me off the island by helicopter.  We spent both my birthday and the holidays in the hospital there, before returning again to our island home.

First weeks of The Return 2014

Mt Rainier trip earlier this month 2014

I began the new year in 2014 weighing 97 lbs. I couldn’t get up from a stool without pulling myself up. I couldn’t open a jar of food. My muscles had been wasted from prednisone, the powerful steroid I needed to combat graft vs. host disease. I still needed powerful immunosuppressants and frequent blood transfusions. Cytomegalovirus or CMV was re-activated and a constant threat.

Because of the Cancer Care Center here at PeaceHealth, we were able to get the care we needed and focus on healing. Today, I am back to those two hour walks and more. We slowly worked our way through our PTSD. I have the appetite to eat, which still feels like a miracle after I’d stopped for so long that I was called anorexic. Over the time of treatment, I lost my hair—3 times, eyebrows, eyelashes, everything. I never once look in the mirror now without appreciating how it all grew back.

Mt Rainier earlier this month 2014

You might notice I said “we” healed and “we” had PTSD. Everything I went through my family of caregivers went through, my husband most of all, and our daughters. We learned that chemo brain and pain and overwhelm were all contagious. Caregivers are the heroes of the cancer experience, for it is grueling and long. In Lord of the Rings, Frodo could never have made his epic perilous and ultimately successful journey without Sam.

People often ask me what did I learn from this experience. I learned that there are Helpful thoughts and non helpful thoughts:

If you have cancer now, a very helpful thought is that Research is on your side. Every year, the treatments get more targeted and less toxic. That is an extremely hopeful thing.

Dancing with daughter Elena at Relay For Life 2014

Unhelpful is thinking that you caused your cancer, or thinking that someone else caused their cancer. I had a children’s disease. I saw kids as young as 6 months-old with leukemia. They did not cause their illness. It just happened to them. I learned that aligning myself with compassion is one of the most powerful energies in the world. I want to love people who are bravely fighting cancer, and applaud those who are courageously standing by them.

Mariya and Shann on Orcas this summer 2014

The Dali Llama says it is important to be happy in our lives. We have to LEARN to be happy, and it doesn’t come from a comfortable perfect life. Learning to be happy for me has been a combination of gratitude, appreciation, laying down the mantle of always trying to appear healthy and strong and being vulnerable. I learned that we all need to see our bodies tenderly, especially when assaulted by illness and the harsh cure. That is what helps us truly see the nitty gritty reality, strength, pain and beauty of people who fight for life and to stand with them.

That’s a part of what we are all doing here today. We acknowledge each other and say me too, I know, I understand. I’m with you. Look at how much courage there is all around us. Look at how abundant Grace is.

The new normal for me means to be slow with filling up my life. I have learned to do what I can on hard days and work or play on good days and let that be okay. When it’s all you can do, it’s all you can do. Now, when I plan for the future, I still always say “God Willing and Fingers Crossed”.

To all of those who came before me, the ones who weren’t as lucky, or who passed before research had a chance to find out what they needed, my deepest compassion. Life is ever surprising, and I was astounded by the year of 2013 in every way. I will always miss my dear friend who didn’t make into 2014 with me. The cold imprint of cancer is nothing I would have wished on myself, and I also know that my own little life is forever changed. I would have liked to stay innocent to this, and age as the healthy person who was never sick a day in her life, I didn’t get to choose that.  What comes clean over and over is this: How we react to life’s circumstances is the real gold; recognizing that everyone carries their own hard burdens and that courage is widespread in the human experience. Love is bigger and more powerful than doubt.

This was my survivor story. You each have your own. I am a walking miracle, it’s true. And so are you.

Equinox/First Re-Birthday Party 2014

The Fall Fairy and bubbles

Music around the campfire

With a quarter moon and clear skies!

August 21, 2014 marks the one-year anniversary of my stem cell transplant. My re-birthday. And the end of a huge, transitional summer for me—and our family. Those long lazy “dog days” are over. I am always amazed and shocked at how the change of seasons suddenly appears in our march of days. It’s not the temperature itself as much as the change of light. June, July and August here in the Salish Sea were an anthem to summer beauty. I am so glad I was here to celebrate it.

Elena’s Journey: A Story That Needs to Be Told

A daughter needed to have adventure and freedom after our rigorous chemo and transplant world in Seattle. So she went to Peru, and for a time, found great fulfillment and physic healing in the adventuring, learning to teach English, becoming an English teacher, becoming a yoga teacher, and exploring the Sacred Valley, going to Machu Picchu and the like. Her regular phone calls in the late winter/early spring were such a delight in our pill laden, doctor focused, mostly isolated existence.

Not in Peru, but you get the picture!

Then trouble arrived. Elena was sick, fighting to pretend it wasn’t so, but failing. The illness took her to places no one wanted her to go. By March, we were faced with Elena’s early return from Peru. It was premature and urgent. Turns out she’d survived a tough battle with typhoid fever. But she still had a debilitating and mysterious parasite. Despite working with the best doctors in Cuzco, they could not find the cause of the come-and-go searing pain, pulsing stings and (migrating!) lumpy hard masses underneath her lower right ribcage. We were pleading and they also told her to go home, as they had exhausted their resources.

They get ready to fly her off island

Endlessly looking for answers on the internet.

She went straight to the Head of the Infectious Diseases Division, Microbiology & Global Health at UW Medicine in Seattle. Enter the period of “looking for the problem” which included coming home, then getting flown back off to the hospital. While the parasite ate her body, literally, we watched her eosinophils (a type of white blood cell) and her liver enzymes rise as her blood samples were sent to the Center for Disease Control and tested for 50 different parasites. All negative. But the confounded doctors had a suspicion that she had Gnathosomasiasis, the larvae of a parasitic worm Gnathostoma spp. Wikipedia offers the following discussion: “It has a complex life cycle involving at least two intermediate hosts, with humans being accidental hosts in which the larvae cannot reach sexual maturity. The main risks for acquisition are consumption of raw or undercooked freshwater fish and geographical exposure.”

More searching for answers.

Elena had ceviche once in Peru. Because it was in Cusco and unregulated, they probably used fresh water fish, which is far more likely to carry such parasites. I sometimes imagine the sweet “typhoid mama” who unknowingly and smilingly handed her the meal, along with the parasite and the typhoid fever.

Jack comforts in his doggy way while Elena searched on her Iphone.

Anyway, we finally Fed Ex’ed her blood to Bangkok because that was the only thing left to do and they are the best in the world on such subjects.. We sent it to the Department of Helminthology (the study of parasitic worms), Faculty of Tropical Medicine, at Mahidol University, Bangkok. When we got the report back that she tested positive for Gnathosomasiasis, we plowed forward into the treatment: three weeks of albendazole, a powerful worm medicine. And gradually, the worm larvae died and Elena came back to her life.

Elena and Mara laugh over photos.

The Summer of 2014

All four of us were shaken by this experience, deeply aware of the depth of our PTSD following these two big near death events. Steve and I admitted to each other that our “qi” or “chi” –our life’s vital force— was frighteningly low.

High summer frog hunting.

My trip to Waldron.

I took the summer to re-build it. So did Steve. Dear Elena had to work to re-build her bank account back to zero. Mariya came regularly to visit and be supportive. We just all did what we had to do. When I look back at this year, I see a time when I lost my body… immune system, muscles, energy, appetite. All the things you most take for granted. Building it back has been slow but real. Every muscle I have now was one I brought back from the dead. Perhaps that’s over-stated but that’s how it felt. Luckily my muscle memory still had an idea how it was supposed to look. I imagine my new immune system, being sat down and lectured to by the rest of my body. “Now listen. We here have always been resistant to ‘bugs”. We don’t get colds and things like that.” And… wow, that’s how it seems to be once again.

A good day, a good summer dinner.

Energy and appetite come and go. “Well, that might be your new normal,” says the oncologist. Perhaps. As I write this, a new symptom has crept in—a sudden arthritic pain in all joints. My lymphocytes remain high and we don’t know why. These are symptoms of leukemia. The doctor ordered another BCR-ABL test and it came back negative. A comforting negative. So we cautiously move forward until the bone marrow biopsy scheduled for October. “Maybe the Dasatinib is causing the high lymphocytes…” the doctors say. As long as the CMV stays at bay (which does only with the help of Valgancyclovir, a drug so powerful it’s considered to be carcinogenic), we accept it. On the anniversary of the transplant, I had a colonoscopy/endoscopy to see if CMV or Graft vs. Host disease were in my gut. Nope. All good. Except for the symptoms that come and go. But I can live with those.

Happy to all be together this summer.

I have learned you just do what you can do on hard days and play/work on good days and let that be okay. Cancer and all serious illness invokes the mystery of who and what we are. I pulled out a healing rune just because. It was Gratitude. Of course. How could it be otherwise? Elena was healed. I am one-year cancer free. A woman hearing my story said, “it’s still so recent. Give yourself time.” Good perspective. It can be easy to lose that.

So, I’m in the middle of a hot fudge sundae after biking through the magical cottonwood drift on the biking trails along the swollen Chena River in Fairbanks, with friends and one of them asks me “what’s your prognosis?”

Choke stutter shrug.

When words finally formed, the message was: I don’t really know. Which is true. Not just for me, but for all the medical professionals that I have worked with, as well. They don’t know either. Not really.

I added “and I don’t want to know”, which was and is true, but when I got home, I couldn’t help myself. I endeavored to look it up. The first time I tried, I ended up cross-eyed and confused and had to take a nap after watching an episode of Lost. Then I took a walk. But I came back to it. What I found was what I mostly already knew. I am over sixty. Point against a good prognosis.

If I were a kid, my prognosis would be good. Period. But as an adult, all those years of living come home to reckon with you, and not to mention that you make all these crazy choices (umm… so I suppose watching the World Cup mid-day last week with a beer in one hand and French Fries in the other is an eloquent example of that).

But. Isn’t part of being a kid frivolous? I mean, what good  do you do the world or anything except your giggling self by running through the sprinkler? Or building forts? With my well tuned ability to justify my actions, I choose to think that some of what I am doing now is BEING A KID. Biking with no spandex and no Hard Body Clothing whatsoever, save a helmet. Walking on the beach. Playing with the dog. Points for a good diagnosis.

The literature is boggling, and uncertain. The bad prognosis includes relapse, secondary cancers, other treatment-caused illness, and my old dance partner, infection. Leukemia isn’t “staged”. I don’t have a tumor to measure or a stage to define my illness. The condition you arrived into care is critical, I know that. Point for me. I checked into the hospital having hiked the Grand Canyon two months earlier. True, two weeks or so before diagnosis when I really felt tired and had no idea why, I mostly hung out on the couch watching Game of Thrones . . . but I had no other illnesses. Not many regrets. Willing to accept angels of any kind. I love to walk, I live in a beautiful place full of nature, I have fabulous friends and a big goofy dog, not to mention a close-knit and wonderful family. Surely those are all good points to even out the age factor.

But I can’t get too carried away. After all, these were all in place when I got sick in the first place. So, I asked my oncologist today to answer the prognosis question for me. We had just been discussing my new propensity for sudden bouts of vomiting, not often, mind you, but unexpected and powerful. And CMV numbers are back up, as well as lymphocytes. That’s one of the several white blood cells which can go high if you have an infection… or leukemia.

I have, you may remember, the Philadelphia positive chromosome. This is, according to Wikipedia, “a consequence of fusion between the Abelson (Abl) tyrosine kinase gene at chromosome 9 and the break point cluster (Bcr) gene at chromosome 22, resulting in a chimeric oncogene (Bcr-Abl) and a constitutively active Bcr-Abl tyrosine kinase that has been implicated in the pathogenesis of CML (and leukemia). “

Simple, eh? Everyday, I take 50 Mg. of Dasatinib, which has been developed to selectively inhibit the Bcr-Abl tyrosine kinase. And my latest test, called Bcr-Abl test tells us everything looks good–or at least, the rise in lymphocytes don’t indicate a relapse. This is after my primary doctor and oncologists got very nervous. But the test says it’s infection (to be identified)—this time—not cancer. You could lose sleep over this. Or you could rely heavily on Story to distract and heal, as I have.

My one-year anniversary of the stem cell transplant is August 21. Then I will say one year cancer-free. And God willing and fingers crossed, I will have a second and more years of being cancer-free. I won’t spend much more time on the prognosis question because, quite frankly, it is a point against me. It takes away my ease of mind and gives me worry. I don’t need that. I feel pretty good most of the time, except for those times when I don’t. Good enough to go hiking in the Cascades for 5 hours and feel fine afterwards. Enough to be front and center to mountain wildflowers and glacier cirques, enough to do yoga outside with digger bees and bullfrogs and summer sunshine. Enough to see orca whales pass on the west side and a double rainbow mark their passage. I am so grateful for these moments in life. Gratitude. Point for.

We learned to say this mantra during the Year of Cancer. Each day was followed by the possibility of me just not being in the next day. Or if I felt good, I couldn’t trust that “tomorrow” would bring me the same.

Now in the hustle and intense energy of the spring, I participate–and like all spring creatures, I am reckless and urgent. During the Year of Cancer I used to say “health is careless”. It sounds contradictory — but it is. Anyone who doesn’t have health knows what is is to conserve every movement and minute. When I was sick, I could hardly look at a full plate of food. Now I can wolf it down with the best of them. And I assume that tomorrow I will feel good enough to eat ice cream again. I waste time, over-do, go on long walks, attend parties and go to sleep at night without concern for making it through. I even drove to Portland and back by myself. I also hold life precious, find myself aswirl in beauty and gratitude, and let go of “The Things That Aren’t Important” with increasing enthusiasm.

Justine and I smiling at life.

Portland friends Georgia, Rick, me, Ruth, Chris

But when I plan for the future, I still say “God Willing and Fingers Crossed”. Mariya made this one up to express what we both feel, that little twitter inside, when we say what we want to do next. No one knows how much time they have left. I used to be interested in calculating my life expectancy, and figuring out “real age”. The Year of Cancer taught me to let go of such illusions.

Need one more to make up one day’s dose.

Still in a dance with cytomegalovirus (CMV). We can get the numbers down by using Valgancyclovir (Valcyte) yet that is so potent it considered a cancer-causing drug itself. It is also brings down the red blood cells. But every time I venture off of it, the CMV  starts to come back. So they have taken me off of Valcyte and put me 6 hefty grams (2 horse pills, 3 times a day) of Valacyclovir (Valtrex).

No wait, don’t leave! I did that on purpose! It is ironic to have these crazy medications sound so much alike but be so different. I have had to teach the difference to the local pharmacy. And I will be on these horse pills until my re-birthday on August 21, (God willing and fingers crossed) so I am trying to get comfortable with them. People will sometimes ask me with a cranky edge to their voice what medications I am still on, like it tires them out just to think about it. But. That’s what. Life After Cancer. Is. Pills. Medications are Us. I am lucky to have mine so low, comparatively (to other cancer survivors). Just my horse pills and my twice a day chemo (Dasatinib) and my synthetic bear bile  for the liver (Ursodiol). Then I just add any other things I take to that, like allergy meds and vitamins/herbs and I’m good! Heck, I used to be a pill warrior, with vial after vial three times a day. This is easy.

Spring mushrooms!

Anyway, God Willing and Fingers Crossed, I feel healthy enough to go to Alaska, so we have bought plane tickets to go on June 18. Just a short trip to say hello to old friends and thank them for the support and love they sent our way. I count all my “first times” now, in the Year After Cancer. This will be our first get-on-plane trip.

Speaking of Gratitude, as I hope I was and always will be, the chorus from Rent comes to mind again. It is a year’s anniversary since the big 2013 fundraiser. I still remember that night when Steve and I were cuddled up on a hospital bed while I got a unit of platelets and a unit of whole blood. And the community rallied behind us, holding us up.

“525,600 minutes, 525,000 moments so dear.
525,600 minutes – how do you measure, measure a year? ”

As my friend Myah said,” it’s all this here but THAT HAPPENED”. I touch the past carefully. Being here NOW is the essence of existence, always has been. But sometimes, as Victor Frankl said in Man’s Search for Meaning–following his work in the concentration camps,people in hard circumstances need tomorrow. I can’t say it any better than the title song for Annie, which just played in Friday Harbor, to the delight of everyone who knew someone in the play and anyone who just loves a good musical. I couldn’t stop smiling.

Us at Claire Nollman’s wedding on Orcas

“When I’m stuck a day
That’s gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh! The sun’ll come out
Tomorrow
So ya gotta hang on
‘Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You’re only
A day away!”

Our DIY Yoga takes place in the living room. In an ideal world, perhaps, this area would be clean and spare, inviting spaciousness and simplicity at the same time. It would be uncluttered and solely devoted to its meditative purpose. But we rarely live in such environs, with room enough for this kind of space, and sense enough not to fill it with things. If I can borrow a lesson from what I know about writing, it is this: talking about writing isn’t writing. Having a desire to write isn’t writing. Having a clean office isn’t writing. All these things help, but in the end, only writing is writing. And this, I’ve learned, can be done anywhere once I get in the groove. With this understanding, we commence yoga in our all purpose living room, clearing the area just enough to ease the mats down. I turn on the Pandora yoga station and Steve and I move, without words, without any effort to coordinate, we simply do our own form of yoga, side by side, in the middle of the floating dust motes and the snoring dog, with focused concentration on our own bodies and what it needs at the immediate moment. It has been wonderful.

We have chugged our way through the barren landscape of latent paperwork, sorting through a staggering stack of medical bills, filing and categorizing for taxes. Amid the search for relevant items, I found miscellaneous computer files that belong nowhere in the world I know right now, like “How to Make An Eyebrow”. This bit of expertise was useful when I lost mine three times, along with my eyelashes. Mining our old files as we do taxes is never pleasant but now I find I must be careful or it can throw me into a blast of PTSD that makes my body want to hide in the dark like a wounded animal. Crazy thoughts shimmer through my mind as I worked. The special shoes I bought for the hike up the Inca Trail? Those gleaming beauts were returned soon after I was admitted to the hospital. Should Netflix be under Medical? How about Whole Foods or the Snappy Dragon? Of course not, I know – but Netflix held a buoy out for me when I couldn’t read, and Whole Foods had Halvah when it was the only thing I could eat and the Snappy Dragon, the Thai takeout in Maple Leaf, was proof that I might have a chance in re-joining the outside world again. I say nothing of all this, and simply file things where they are supposed to be, but the thoughts continue to ramble through as thoughts do.

I knew before I came back that I may need some counseling to get back on track. Counseling is like massage… you never know how tight your hips are until they are under someone’s hands. After some prodding and poking at a particular tender spot inside, I recognized how young Shann learned to evade things at home by at going “away”, deep into an interior world and far “away”, into fantasy and science fiction. They were my coping mechanisms. Of course, I never could really go away, I just learned how to hide in my imagination. When I was in the thick of the cancer world, I went away from the assault of “the cure” in exactly the same way. It was, admittedly, a wonderful thing to be entertained and distracted by fantasy dinosaurs who break out of the time space continuum when I couldn’t hold down a single item in my stomach and hardly hold my head up… but there was a cost. It isn’t uncommon to suddenly buckle to my knees (inwardly) as the paper trail stack under chemotherapy and bone marrow biopsy grows larger and my absent mind comes home to find out what has been happening to my body in all its chronological glory.

Most people live in a world protected by an invisible suit of armor. It is one of the most essential parts of who we each are, and it is what allows us each to go into public, mingle with strangers, hug friends, work and play and shop for our daily bread, so to speak. Mine was progressively killed off in 2013.  It didn’t hurt. But to lose something so critical… yet so invisible so as to be utterly undetectable to anyone… wow, no wonder that to remember and grieve my own immune system takes the rug out from under my feet. To remember or not to remember? When is it indulgence and when is it absolutely necessary to take the time to remember and feel this? I know some of the right answers. It is required to meet and feel the pain to ease it. I know this. It is also required that I leave it behind. And doing so bit by bit is perhaps the only way I can safely do it, and still be present for the rest of my life.

April is a tender month, full of new growth. Relax, I whisper to my stiff neck and tight hamstrings. Unfold into bright flowers, like the tight blossoms of the rhododendron beside our living room window. April is the month when I feel it’s okay to fully let go of winter. March seems altogether too early in most parts. But by April, there is no arguing with the luxuriant sunshine that has mustered into our lives. The gentle balance of equinox is over; it is a full on race for doing EVERTYTHING. Or so it feels on the fair days, at least. The world spills over with movement and color—skin meets the warm air and sunshine for the first time this year. Bumblebees tap the windows, hummers zoom past, snakes slither away as my bare feet pass by.

I still live by the fluctuating blood counts of my life. Red blood cells and platelets, made in the bone marrow are slow to recover and reproduce as they should. White blood cells are pretty solid, a boon against infection. CMV is under control, until it isn’t, anyway. Unexpectedly measles has become a player on our island and once again, isolation is suggested. Secluded, I will do, but not completely, because I already have and I just can’t live like a hermit. These thoughts flash through my awareness as I do yoga in the morning. What a world we live in, I think, as the harsh and painful pieces dance side by side with the grace and the beautiful and the dust motes. I want to leave behind the hurt and gloom of last year and join in the island celebration of spring days, but the daily practice reminds me that each day is different. Struggling for some kind of balance, I feel the lie and the truth of being “peachy keen”. I wonder if my dad did the same? He liked irony, so I suppose he did. We all do, don’t you think? My thoughts zoom around such things, in monkey mind, while standing in tree pose, of course.

Elena is home!

I was just outside  peeing in the rain—(10 inches worth—rain that is– in the past 4 weeks, or so says the news out of Seattle)—doing my ‘deed’ partially as in invite to Jack, who hates the rain with a purple passion, and just about has to be pulled off the porch lest he get his big furry paws wet.  The boy actually put his head between my legs out in the field, to try and keep from getting wetted by the rain, while he dodged the man made variety (must be the lab part of his lineage was dropped from his chromosomes!).  Granted, the Pacific choral frogs  are out in force, singing their full throated greetings to the warming spring down pour, but dang it if we don’t have a large handful of friends and family sending facebook, post card and phone calls from the warmth of Mexico, Arizona, Hawaii, while we are pretty much stopped from adventuring far from the ‘home base’, because of the ongoing requirements of post transplant cancer.

There is so very much to give thanks for:  caring family & friends;  daffodils blooming;  flocks of robins taking baths out in the mud-puddles and gorging themselves on lots and lots of worms, while we watch bemused from the warmth of our front room; our comfy home; the best in medical care; the clamor of the neighbor boys  down the road, getting their skills  honed  for the soon to come baseball season;  dinners, cards and golf with friends (an Alaskan friend just visited for a few days dodging  her return trip to the colder climes, and remarked that she had never played ‘under water golf’ before—our version of NW linksmanship, Xtra tuffs required!).

The dark, wet times tend also to dampen the spirit.  Another friend from Alaska just bit the ‘proverbial dust’;  a constant danged reminder of our own fragility and the  pain that comes with the lose.    Shann has the virus CMV again.  It  poked its head out of the ‘blue’—-yea right!  It’s to be expected that with a depressed/immature immune system that these things  are bound to happen, but it still sucks!  Our very good health insurance still requires pre authorization  (some of Shann’s drugs are unholy expensive!) and many hours have recently been spent trying to make sure there isn’t a lapse of her chemo Glevec family of drugs—Sprycel.  Just more stuff like that—–

OOOOOOO I guess I should just go have a slurp of single malt and watch a movie, lest my mood darkens more! …..Tonight I am going to dream about a spot in Hawaii with our name on it—Jack will just have to suffer here in the rain and hold down the fort on his own, until later in the Spring when we hope to hit the road again (keep an eye out for a small self contained van for sale–we’re in the market!).  Daughter is flying in from S.A. soon to deal with her own set of medical issues.  Sorry to not be more ‘spring like’ in this missive.  The sun will come out, and all will look and feel better as the winter leaves us!   Movement and growth are happening!

‘Carry on’, as my old Alaskan buddy Bullwinkle used to say!    Steve

Yep, it’s been very nearly a year since being diagnosed with acute leukemia in late February 2013. I have tried to be faithful to each stage through blogging, but this one has been the hardest. I have written this blog entry at least four times. Each manifestation has been different, with distinct tones, funny and light, hopeful, progress report etc. Then I sit and stare at it and erase. I might as well try to catch the wind and make it tangible. Everything in my life feels like it has been dumped out of the drawers and now needs organization and a place to go. That’s how it feels. We watched Captain Phillips last night and when, in the end, the military saves Phillips (Tom Hanks) and kills the Somalis and he is curled up into himself, in shock, and barely able to talk, I thought “I’ve looked like that so many times”. A part of me still does. Every time I came home from the hospital.

That is the dark of it—the memories. We draw in our breaths, waiting for the other shoe to drop, like it has so many times. At the same time, the progress is steady and real. We visit friends and entertain here. I wake up feeling good. I can even do something as normal and amazing as take a shower unencumbered by all the plastic needed to protect the Hickman. This piece of technology that I literally wore into my body so I didn’t have to punctured every time I got chemo for medication or blood and for the seemingly endless blood draws, has finally been removed. Standing under the flow of running warm water is indeed such a miracle. So . . . pause, drum roll, hooray! Triple knock on wood.

My hair is fuzzy, like a downy young bird’s feathers, still mostly dark, sprinkled with white too frequent to be negligible but not enough to dominate. Since it started growing first on top, I have a bit of a Mohawk, and Steve calls me Tweety Bird. The Cytomegalovirus is gone (a sign that Mariya’s immune system is working) and I am gradually being weaned off immune system suppressing drugs with no flares of Graft Versus Host Disease. For someone who had to sit down right on the road more than once to be able to make it down to our beach and back (about a mile roundtrip), my ability to walk easily now is another marvel. I now weigh about 110 pounds, enough to feel the roundness of hip again when I lay down, a lovely thing, and a reminder of being a woman instead of a skeletal 97 lb. girl.

Mariya has come to be with us for a month. She is our yoga teacher and helper/motivator in all things. Every morning we do yoga in the living room, all four of us. Jack’s yoga consists of one downward dog, then a restorative pose he holds for the rest of the session, following his breath in a gentle snoring sequence. Our moves are more complex, as we stretch our way out of a year with very little activity.

With her lovely young adult energy, Mariya poked and prodded us out of a lethargy that bordered on depression. That PTSD that had appeared around the edges of my consciousness had been quietly growing as our schedules diminished and the strict focus on medications calmed down. My way of fighting it for months had been distraction, which mostly consisted of hours on the computer, with twin Netflix and Facebook addictions. People would often ask me if I’d been reading. Well, no. I couldn’t concentrate on anything longer than a magazine article, a characteristic, I’m told, common to chemo brains. Now, I celebrate my slow return to books— but for months, during my most isolated days, it was me and many TV series and Youtube shorts keeping me company. For the first week with Mariya, I was horrified to learn that this had become my main topic of conversation as well. The couch, and my two-foot focus on a small screen, had become my most comfortable territory. Distraction and self-soothing were my weapons against PTSD.

Celebrating Kari’s birthday.

Now my practice is different. I’ve learned to “stop the world” regularly, to quote from Castañeda via don Juan. Projects surround Steve and me like puppies competing for their mama’s milk. Every time I sit down, I think of another, long put off item on my to do list. But winter is starting to pass the baton to spring here. The pussy willows are coming out, daffodils are raising their glorious yellow blooms, the male robins are back in fine style. If I died tomorrow, I would have wanted to truly notice this glorious transition. If I am lucky enough to live for many more years, which I no longer take for granted, I want to wade now into this Quickening of island life. Thanks to all of you who believed in this moment and who helped make it a reality.

A surprise serenade on Valentine’s Day!

Recap: On the night of December 17, I was airlifted off the island by helicopter.  First, an unusually low oxygen level was detected during the usual blood draw. A CT scan at the Friday Harbor hospital indicated evidence of pneumonia and a fluid effusion around my heart prompted a whole lot of consultation between ER docs from Friday Harbor, the Oncologist from Bellingham, and the Oncology team from UW Medical in Seattle, who decided collectively that I was not, in fact, “peachy keen” and within an hour after the decision was made, I was wheeled out on a gurney to the helicopter  looking up at Orion and Sirius and that was the last time I was outside for 8 days. A run on sentence, yes, but I kind of like it. It fits the tempo of spending my birthday, Winter Solstice and Christmas in the hospital.

I am still “suppressed”. They call it immuno-supressed, but what I experience is suppression of my activities. Social time has shrunk dramatically, so has creative energy. When I emerged from the last hospital stay, I had lost weight again, due to suppression of appetite. Dipping below a 100 lbs (97.2) scared me and got my attention. It is hard to eat in the hospital. Now back home, the combination of friends, walking, eating and sleeping are healing. I am back over 100 again (barely) and gaining weight is my goal. I am shaking my head as I notice that for the last 4 years I “Lose 10 lbs” in the top 3 of my New Year’s Resolutions. Well, nothing was lost until this last year, where I got my wish all at once and lost 40 lbs. in 2013.

I just read the heart effusion report from the hospital and it is rather frightening, from what little I can understand. Like most other people, I thought the transplant statistics of leukemia and transplant to be a straightforward event. You survived the event or not. I never really understood the serious effect of injured organs or infections (like the one I had) that could overwhelm an immature immune system. I took the drugs that were metered out and now I meet the shadow that followed them. The transplant mortality statics, I now understand, include dying from things like pericardial effusion and pneumonia.

Heading home on the ferry.

What to do with such epiphanies? Nothing. It just is what it is. You meet hard things as they come up and what comes next is luck or attitude and support group or modern medicine, and some of it is your constitution and genetics. 2013 was the year where I let go of illusions and met time without a sense of entitlement about how much I could “cheat” death or illness. Bottom-line, we are all on the same bus. Going to the same destination. There is something freeing about this awareness. Leading a long life is not my goal. Leading a full life, leaving some king of legacy—is. Steve and I agree without much discussion that leukemia and its treatments have likely shortened my life expectancy and that cancer will always be part of our awareness. Having said that, we quickly arrive back to appreciation and gratitude and Grace and we choose to stay most of the time (sometime it overwhelms us). Sharing the cancer experience with others allowed us to see how much courage is all around us.

Joyfully resuming an “ordinary” activity–walking with friends.

The Dali Llama says it is important to be happy in our lives. But I believe he means to LEARN to be happy, and it doesn’t come from a comfortable perfect life. Learning to be happy for me has been a combination of surrendering to the circumstance and slowing down. Laying down the mantle of being healthy and strong and being vulnerable has been difficult. But now, I am more able to see my own body tenderly, a physical being assaulted by illness and the harsh cure, and this, in turn helps me see others that way, with others who are fighting for their life and health, not to mention financial pressure, fear and instability. There is a joy inside that empathy, and it is better than just trying to be the best and healthiest around.

January is a spare interior month. The gaudy, gregarious nature of December passes swiftly and we often don’t really absorb energy of winter until after New Yew Year’s.  Even when we are delighted by the joyful proclamation of Winter Solstice, our animal bodies are met with long darkness and fleeting daylight during most of the month. Hang in there, I say to myself and to you. The light is truly returning and gathering minutes like a rolling snowball gathers bulk. The earth is pregnant but not showing yet. Here, the tree frogs are invisibly croaking, just enough to remind us of their presence and the sturdy and beautiful LBB’s (little brown birds—the chickadees, nuthatches, sparrow, robins, towhees, finches and juncos…) are busily making a living. The eagles are beginning their mating flights. The blue sky IS there, I am sure of it, above the clouds.  Happy winter. Spring is on its way.