The New Year

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

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

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

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Children playing

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

Elena day dreaming at the Cultural Musem in Mexico City.

Elena day dreaming at the Cultural Musem in Mexico City.

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

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

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Mexico City

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

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

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

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Mexico Dreaming

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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.

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Rufous and Steve doing yoga.

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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.

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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.

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New solar panels on the house.

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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.

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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.

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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.

 

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The wedding in Homer.

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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!

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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.

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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.

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The Daily Play

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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.

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Family Reunion Cooking

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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.

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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.

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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.

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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.

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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)

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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.

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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. http://www.medscape.com/viewarticle/813967

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.

http://www.idealmedicalcare.org/blog/why-physicians-commit-suicide/

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.

Addendum:

  • 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

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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.

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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.

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

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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.

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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.

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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.

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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.

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Lahaina’s beautiful banyan tree

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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.

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The freezing winds of Haleakala

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Us and Will, Christmas 2014

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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.

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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.

 

 

Then Came November

IMG_1618Life 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.

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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!

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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.

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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.

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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.

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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.

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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.

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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.

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Beautiful daughters.

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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 One Year Check up at Checkpoint SCCA

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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…