A Supermoon, Snow & A Super(?) Hen

I’ve delayed writing for a week now, much to my chagrin.  So much I had in mind and now most of it lost. But, I am persisting.  The Full Moon Super Moon was a week ago on Dec. 3. That was a Sunday and it snowed most of the day, plunging into single digits temps by the early evening.  I wondered if the clouds would clear for a Full Moon viewing and was pleasantly surprised when I stepped out around 1 a.m. to view the  Moon.  There was a large rainbow tinged halo around it but it was a big Full Moon casting its icy light across snowy fields.  The contrast of white and black, some grey, made the stillness and freezing cold air a scene of suspended animation.  An hour later, when I still could not sleep, I returned to the window and noticed that the light casting over our snowy acreage was a very pale blue.  Magical and comforting despite the cold I did not venture out into for a second look.

But, the next morning, when I went out to free the 4 hens from their coop, I was dismayed when I discovered that my favorite hen, Ruby, was not in the coop! Somehow I missed her when I shut them in the night before.  In the twilight and snow I peered into their coop as I always do, to count them, and didn’t see that she wasn’t there after all. Too many shades of dark brown and black, I guess. Chickens do everything as a group:  they wander around eating bugs, chase each other, and all return like clockwork at the first sign of dimming sunlight (cockshut) in the late afternoon these days. Wherever Ruby was, she wasn’t with the group. I resigned myself to the probability she’d been eaten during the night by a coyote or bobcat. I searched the snow for tracks and feathers, but couldn’t find anything to suggest what happened. I blamed myself for missing her in the nightly count.

Later in the day, though, I sat on the front porch a minute and uttered her name several times, just in case.  Lo and behold, Ruby answered and slowly appeared from behind the shrubs now bowed down with snow along one side of the house. These chickens have not been handled so they shy away from being caught. Still, I threw food out to her, which she did go after, and hoped she had not suffered frostbite. How she survived the bitter cold night, alone and undetected by the wild predators that are always around us here, was amazing. But, I couldn’t get her out from under the bushes and back toward the coop. So, I chased and caught another favorite hen, Boo, who seems to be a possible leader of the flock. I placed her down near Ruby in the bushes and hoped that Ruby would somehow follow Boo back to the coop. They hung out together, pecking at scratch and seeds, but neither wandered back to their coop.  No such luck….

As the day grew colder and dimmer, I made the mistake of going outside once with no gloves, determined to use a broom to “hurry” the hens out from under the bushes onto the driveway and eventual connection with the rest of the group in the coop.  Again, no such luck….Boo ran off as hoped and quickly got on her roost in the coop. Ruby? Still in the bushes and reluctant to walk on snow or leave the shrubbery. My maneuver only took a few minutes and since I was determined to “save” her from herself and another night of freezing or predation, I clumped across the branches bowed down with snow, swatting at the “thing with feathers” and immediately face-planted in the snow when I tripped over some branches. I wish someone had been around to laugh at me, face down in the snow, as well as to help me get up. My arthritic, damaged knee does not bend and rolling round in the snow, grasping at other branches, I finally got myself upright, exasperated and very cold.

When my sister came home from work, in the last few minutes of light, I suggested we try again, heading Ruby off “at the pass” if we had to although now I was wondering why her instinct for survival wasn’t guiding her actions. Was she hypothermic and addled, not thinking clearly? Were her chicken toes too cold to stand for more than a second in the snow she’d have to cross to get back to the coop? I’d never captured and held her before and didn’t know if I could as she was pretty quick at running along the wall just beyond reach of my broom and net and then circling back around me over the snow-burdened branches that had earlier tripped me. I didn’t want to fall again and I didn’t want to admit defeat but Ruby was evading me quite nimbly.

On one of her circles back, though, I pounced with my hands on her back, worried I’d break her delicate backbone but trying to stop her just long enough to grab her, which I finally succeeded in doing. The screech she let out was unlike anything I’d heard from any of the chickens, even Boo, who I’d chased down and caught earlier. I put her in the coop and hoped she’d be alive in the morning.  And, she was! She did not come out of the coop all day and was lucky that the sun warmed the coop for most of the afternoon, restoring her inner temperature to normal, I hoped. I brought her food and water, shut her in with everyone at “cockshut” time and Ruby was her usual self by last Wednesday.

Maybe chasing down and saving a chicken from itself is something trivial in the climate of the world we live in now. California is burning up in wildfires, our despicable political climate exerts more toxicity than imaginable, and many of us worry about what will happen next with the outrageous “tax reform” bill, less accessibility to health care, and for those of us on Social Security and Medicare, the real threat of those being attacked, too.  I resent that I paid taxes all my working life into Social Security and Medicare and am now viewed by the repugnant Republicans in Congress (some) as not deserving of the benefits, hearing them wrongly called entitlements. And, the sexual harassment issues are huge and applicable to so many of us as women, too many, and the men who lie about such things will continue to be emblematic of how women/females are still not valued in our society.  No, I don’t like what is going on and I know I am not alone.

So, if I can save the chicken from herself, even as I plot daily how to save myself from myself or the economic deprivations I am now experiencing, then I am happy that my respect for life, even a chicken’s life, has been something I could act on. I just wish I had more options available to me now, such as a job and enough income to live in my own space instead of the nomadic journey I have made through sisters’ houses the past three years, with no end yet in sight. Face plant and all, the chickens keep me sane during this time of cultural insanity. And, Ruby is a super chicken for having survived one very, very cold night when we heard coyotes howling earlier but they didn’t find her. For us humans, though, there are coyotes howling ever closer every day. I hear them and wonder how I will survive?

Sunflowers and Emu Eggs

Today is the 35th birthday of a young man who has been close to my heart since he was 12.  He first knocked on my front door when I lived in Grass Valley, CA.  It was during a time of grieving by my daughter and me and I didn’t want to be bothered but something about him connected us almost from the start.  Was it his intensely blue eyes and friendliness or something I couldn’t see but already felt from his heart?  He had just moved in across the street and soon became a daily visitor who liked my cat and sometimes watched television, sometimes slept over on the couch.  His family life was rough and I asked permission for him to be over as often as he was.  His teeth were bad and I quickly figured out that he had known a lot of neglect and rejection in his young life, with much more to come over the years.

There were tragedies but he often hung out with my son and me as we went on driving trips out to the coast or up into the foothills.  We often hiked along the South Yuba River.  In the summers we hiked back almost a mile to swim in a favored swimming hole.  He was fearless around the water and we always laughed and enjoyed ourselves.  When driving, with or without my son along, we would often exclaim, “What’s that?” when we saw some animal crossing our path or alongside the road.  Usually we were going too fast to stop and look closer before the animal hid.  It became a kind of code phrase between us, all these mysterious sightings.  Once, in a county park in Sonoma County, a very large and long rattlesnake slithered across the roadway in front of my car.  It was at least the length of one car lane and then some extending over the center line. I was fascinated at how big it was, how slowly it crossed the road, and I wanted to get close enough to look at it from my open window. The boys, on the other hand, were totally freaked out in the back seat and I asked them if they thought the snake was going to climb into the car?!  Years later, this young man would live among people in a rattlesnake infested area where he learned to gently collect them from the house and move them elsewhere.

On another Sonoma trip I showed him how to follow a killdeer who was doing her best to distract us away from her nest.  I searched carefully and soon found four small speckled eggs close together in the rocky terrain.  I hoped he learned something about paying attention and not disturbing what he found; I hoped he felt it was a blessing. In my life, I count him as a blessing, too.

Killdeer Nest 2009

Today I celebrate him in my heart even though I cannot be with him and haven’t seen him in more than four years. His life has continued to be very hard and very sad at times yet we often found ways to visit whenever we both lived in California.  I always remembered his birthday and Christmas.  It was hard keeping track of him as he was often homeless and still is.  He has learning disabilities that have impaired his ability to work and at times been treated unkindly.  He has been his worst enemy and one of my best friends.  I call him a child of my heart, for he is not a child from my body, but he has firmly rooted himself in my heart through all the years and tears.  He’s been incredibly helpful to me in many instances of needing a strong person to help me move. He saved my life from a man who may very well have meant me murderous harm but somehow this young man intuited it and stayed close to help me, calling police and watching out for me.

He’s made me laugh and I’ve cried over him.  I’ve worried about him and prayed for him.  I still do and long to see him.  He lives farther than I can afford to travel now but I keep trying to find a way to him.  He lost his parents and has no close family.  He lost what little he had in a huge California fire a few years ago but escaped with his life and only the clothes he wore.  He’s probably the loneliest person I know and it hurts to know this because I have experienced such love and kindness from him over the years but a lot of people shun or avoid people like him.  He’s been homeless long enough to become feral in many ways and doesn’t do well at jumping through the hoops to get whatever limited aid may be available.  He has been a deep teacher for my soul, an unwanted source of pain and sorrow and anger at times, but always and foremost, my friend and someone I value very much in this life and promised to keep a hold of forever.

I could write and write about him and what he has endured and think I will at some point because there are so many stories, so many struggles we went through together and many more he endured alone.  He is a survivor, as am I, and yet I always wonder how it came to be that we bonded.  It was something in him that I felt yearning, reaching, just as I had as a lonely child.  And, it was the gentleness with which he revealed his creative soul to me, what others seldom saw or appreciated.  Early on in that first year of our friendship, in early spring, he brought me sunflowers because he somehow guessed I would like them. (He was right.)  And then, one day, he brought me half an emu eggshell he’d found. It was dark, kind of green-black and stippled with blue/turquoise dots.  It was one of the most beautiful, delicate things I’d seen and he knew it would delight me.  To this day we still talk “in sunflowers” whenever we can.

I miss him and wish I could have seen or even talked to him today.  But, I now know that he is in a community willing to befriend him if he accepts their outreach.  He is making public art out of discarded flowers and whatever else he finds, sharing his heart to bring joy to other hearts.  Below is a heart made from found flowers and plants and a wire man reading a book on a bench, all made by Justin Olson, November 2017, Healdsburg CA:

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There is no happy ending in sight but I keep hoping for him especially when the rainy season begins, as it has now, and he lives in his tent.  I wish I had a home he could come to and we would somehow find a way to redeem all the pain, loss, grief, and broken-heartedness we’ve known separately, nurturing ourselves again with the love and joy we always had when together.  “What’s that” going to look like if it ever happens?

Today I celebrated him in my heart with memories of all the joyful times we’ve shared and the sense of wonder he found in those sunflowers and emu eggs.

 

Almost Half A Century Ago

Today was interesting for the synchronicity of receiving some old photos of me, at 18, on the same day when I was contemplating aging.  I had sent my children an unvarnished photo of me today, noting the now grey hair and how my face is changing.  I’m still surprised when I see photos now.  No makeup, just me straight on and, while aging is inevitable, I still feel that a sense of vitality eludes me in current photos.  I ascribe this loss to the cumulative effects of what I’ve been through the past two years of treatment, perhaps the disease itself, and the current regimen of medicine.  I miss that spark and sometimes I catch it but I see the difference in photos from the past five years, too.

But the synchronicity was that my first love, a boyfriend from years ago and still someone with whom I have sporadic contact, sent me a zip file containing photos he had from when I was 18.  It was stunning to me to see these and better yet, I could recall where they were taken. Two are below, the first from when I was a senior in high school, nearing graduation at 18, and the other from one of the many road trips we took up the California coast before we parted ways for a long time.  It made me happy to see these and remember.  He turns 71 tomorrow, and I am more than halfway to 67.

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It is startling to realize that these photos are almost half a century ago!  How does the magnitude of the years and all that occurred between then and now begin to be told as the story of a life lived?  We tend to calculate time in a linear fashion, we humans, although I don’t believe it is linear and, frankly, I’m not even sure that “time” exists or what it is, exactly.  But, I can look at these pictures and remember so much of who I was and some of the dreams I had then.  People even made fun of me for being an idealist yet the alternative, in my world, would have been despair.

Tonight the clouds are dense and blue-grey, covering the sky in the west.  Snow is predicted for tomorrow, but it will likely be light and short-lived.  Seasons pass as a form of time; I believe more in cycles.  And maybe parallel universes where this young woman still exists.  I’m not sure of any of this but I ponder it often.  Geologic time fascinates me because it is so slow and enduring.  We don’t notice the changes, if any are noticeable, in the rocks and mountains until we face a catastrophic change in the geography, a huge rock shearing away from the face of El Capitan as it did recently; now the face of this iconic landform is forever changed but it is still El Capitan.

Up in the Lamoille Canyon, formed by glaciation, I try to imagine how the ice moved slowly and carved the narrow, steep valley, the incredibly monumental cliffs of rock reaching far into the blue sky.  I am awed by it all and that, ultimately, is what living is all about for me:  a sense of awe and wonder that has never left me, regardless of many hardships along the way that shattered dreams and made others impossible to entertain. I don’t dream as much now for we live in some bad times, as far as I’m concerned, and dreaming is hard when so much needs to be done just to survive and help others survive, if we can.  I am, indeed, aging and it seems so backwards that all the wisdom only comes later, before we finally die or have no more use for it.  And, we cannot give it to our children or anyone else, really; they must earn it with their own lives lived.  We can tell others, and I believe my children deduce a fair amount of wisdom in what they know about me, but oh, that young woman of 18 was so innocent, naive, shy, and full of ambition to be “somebody.”  But, we are always “somebody” even if we don’t claim ourselves until after many cycles of life lived with losses and gains, unwanted experiences and some we could never imagine.

I confess that there is a turning point when people do think a lot about the trajectory of their lives,as they grow older,  For some that may bring sorrow and regret.  I remember meeting a wise old woman, an artist, many years ago in Big Sur.  She lived in a house that was part of the property where Henry Miller once lived.  She was tough and certain of herself in a way I admired but was also just a little intimidated by as I sat having tea with her in her magnificent house perched high on the cliffs of Big Sur, overlooking the Pacific Ocean far below.  She was in her eighties, still creating jewelry, and her house was a marvel of the psyche turned inside out with masks on walls, thoughtful art, and just a glorious sense of mystery and wonder. She told me then, when I was barely 34 or 35, that I would have to choose from all the dreams I had and realize I could not, would not, have them all.  She wanted me to understand that commitment to a few would bring far more excellence than pursuing as many as I could imagine.  I wasn’t quite ready to believe her but now I know what she meant.

There were so many things I wanted to do, places I wanted to experience.  It is part of youth to believe you can do anything and everything.  But it is not a failure to admit to discretion, when the time comes, as it does on this side of aging when there is a reckoning with oneself about what is possible and probable, the fates willing, with an awareness of the thread of one’s life shortening.  I am not sad and this pondering, this “wondering” that brought me to tonight’s post, is not a swan song.  Who knows how many years, days, hours any of us has at any age?  Yet, the young woman in these pictures believed with all her heart that she had all the time in the world and now I know otherwise.  It’s not about time, though.  I think it’s about will, intention, and staying open to experiences however they arrive and when they arrive, regardless of age.  I am simply reckoning, though, with the girl I was and the woman I am.

Distractions, Detractions, Beauty

Tonight’s sunset presented me with a Rorschach image.  Opaque dark grey clouds covered most of the sky, with a thick layer of burning red-orange light on the underside of a mass of blackening cloud layered above the western sky.  I looked into the cloud mass and saw a jaguar, with its mouth open.  I thought it might be running toward the setting sun.  Then I saw that a large dark shape was on its back or side and first thought it was a turtle but then watched the head of a vulture or condor appear.  The jaguar’s neck was partial and a blackness filled the space where its neck and further down, its heart, would have been.  So I interpreted that the jaguar’s heart was gone, perhaps eaten by the large predator bird.  The jaguar wasn’t running anywhere; it was on its side, dead or dying and the huge black wings of the bird covered most of it.  I watched the darkness in its neck and chest merge with the wings of the bird.  Blood orange-red light in the west.

Out here there are sometimes spectacular sunsets.  Tonight was the first time I thought these things, thinking I was only going to see the thin band of burning sunlight as the sun sank far away in the west, over the ocean.  Out here we have magnificent spreads of stars covering the sky whenever it is clear and a New Moon night.  The Full Moon is almost upon us in a few days, though, and the stars will be blinded

There is a kind of beauty in this part of the world that many people do not experience or see.  If it is daytime, and they are driving through or just hanging out on a porch, wondering about other places they could be, there is mostly a sparse landscape of dun and sagebrush, golden grasses and a lot of open space.  The mountain range behind me is something else, more dramatic but not always in view.

In the past few weeks I made two trips to Salt Lake City.  I rent a car for these trips, both related to visits to the cancer center in Salt Lake City where I am followed.  It is expensive, since I don’t own a car anymore, and I have now made the trip at least four times.  I drive interstate 80, the only straight road east.  Driving out of Elko, past miles of sage and sand, an occasional crossing over the Humboldt river, and a few small summits where there are more trees and wondrous rock outcroppings, I always look forward to the drop down into the edges of the Great Salt Lake landscape that begin with the Bonneville Salt Flats.  Long distances are covered at 80 mph (posted speed), and the salt flats dazzle, especially if there are clouds in the clear blue skies.  Silhouettes of dark mountains lie at a distance to the north and south, perpetual reminders of the basin and range geography; no matter where you look there will a distant set of peaks rising up in shadowy relief behind the closest mountains.

Every time I drive this route, I commit it to memory, sometimes surprised to see something new when most of my vision is on the road.  This past trip I saw what looked like an ancient lava flow in a small group of hills and a red earth cinder cone.  I have been most delighted in the past two trips by the sight of miles of wild sunflowers waving their yellow faces next to the road shoulder and in the median.  I couldn’t help but wonder if someone had planted them but it seems unlikely.  They made me happy.

But, these sightings are not distractions or detractions to me.  Detractions are usually the ugly constructions made by humans, scattered in the barren landscape.  And, in one area marked by a sign as Independence Valley, there is another sign advising against picking up hitchhikers because it is a prison area; what irony to live in Independence Valley, in a prison.  Or maybe it’s cognitive dissonance.  I see a sign for Beverly Hills but it must be hidden back in the hills.  There isn’t much to be surprised by on the long straight stretch between Wendover and Salt Lake City.  I’ve learned to look for the lone Christmas Tree sitting by itself on a mound out in the sand, with a chair.  There is a big, peculiar piece of public art that I keep wondering how I can photograph.  It is tall, painted in pastel colors, and has what look like four large globes hanging off the top. I can’t tell if it’s meant to be some kind of stylized palm tree or just a weird, alien prop on the white salt.

When the salt flats peter out, I begin to see shallow pools of water beside the road.  If the day is clear, they reflect clouds and sky.  I want to stop because the reflections of fenceposts wavering in the waters hold my gaze repeatedly.  The speed limit and soft shoulder say I cannot stop.  Then I look for the tall smokestack of the Kennecott open-pit copper mine, the largest in the world.  It is called Bingham Mine and the stack is known as the Garfield Stack.  This has intrigued me the most in all my years of driving this road, long before now.  On this last trip, leaving the Salt Lake City area, I took a wrong turn somewhere and ended up on a roadway that took me closer to the copper mine headquarters than ever; now I know how to get there and was told they do let visitors in for tours.  I want to see.  It is a massive mine, with miles of railroad cars on tracks down below the mind buildings.  The really incredible mine pit is hidden behind mountains rising up at the back of the stack; I saw it once from an airplane and was astounded by what the mountains hide.

As for distractions, the biggest one is what I encounter with each new car rental.  I don’t understand why every manufacturer had to make their dashboard so different, so foreign.  I’ve managed to find needed windshield wiper action and lights, sometimes get the gas cap on the wrong side when I pull up to a gas pump.  Lately the rentals have included keyless, push-button ignition.  I’m not sure yet as to whether I like this new format.  But, the latest rental car was a free upgrade to a bigger car, a Jeep Cherokee.  That dashboard took the cake.  So many choices, so many icons that were unfamiliar.  And these are the distractions to me, when you are whizzing down the highway and trying to make heads or tails of a function you didn’t think you’d need but now do and no way to just glance over and figure it out.  The windshield wiper controls were another mystery.  And the screens!

I thought about all this gizmo overload in the car and decided it is way too distracting for the uninitiated, and maybe even drivers in general:  screens broadcast different information and my thought is:  why am I supposed to be reading the car when I am driving the car?  I want it simpler, like wild sunflowers alongside the road, like the bigger picture of sky and clouds.  Or the distraction of a Rorschach sunset that sets my imagination in motion.

Two Years & Counting

Today is the second anniversary of the stem cell transplant I received. People in the medical and patient communities refer to the date of the transplant as a “new birthday.” I never quite cottoned to that idea, partially because I like the birthday I have already! I tried to see it from their perspective but after much reflection today, recalling as much as I can of what happened in late September 2015, I’ve come to a different understanding that speaks more truly to me. September 28, 2015 was a day of rebirth as the intentions of the actions taken that day were to retrieve my body quite literally from the brink of death.

When I was admitted to the hospital on September 25, 2015, it was to undergo a voluntary procedure of being given high dose chemotherapy intended to destroy my bone marrow in preparation for the transplant. The chemotherapy used is a derivative of mustard gas, no less. I agreed to be poisoned in order to live longer, hopefully in remission. In preparation for the transplant (ASCT), I first received 5-6 months of induction therapy, i.e., chemotherapy given to reduce the tumor burden. Because of the toxicity of even those first drugs, it is preferred that less than six months of induction therapy be given as it will weaken the stem cells that will eventually be harvested for the transplant. I was exhausted by the twice-weekly infusions that never quite got me into even a temporary remission before the ASCT.

As explained in earlier posts, my own stem cells were harvested from my bone marrow, cleansed of the cancer cells (hopefully) in them as they could not be subjected to the high dose chemotherapy meant to kill everything in my bone marrow. My harvested stem cells were preserved and stored for the transplant and, since there were enough left over, maybe future treatments requiring stem cells but not a transplant (in my case, due to my early relapse, I am ineligible for a second transplant).

The day of the high dose procedure, my daughter, son, and sister accompanied me. Because of the toxic drugs being used, the medical team wore HAZMAT outfits: heavy yellow rubber gowns, Plexiglas masks, heavy-duty rubber gloves and shoes. My family watched and wondered why, if it was all so toxic, neither they nor I were protected, but I think it was the handling of the drug that was most hazardous if there was a spill. For my part, I was told to chew on ice chips and suck on Italian ice pops for the entire time before and during in order to minimize the side effects to my mouth and entire gastrointestinal tract. It was hard to ice down my mouth for as long as I did, at least 60-90 minutes and even then I did not avoid the more severe side effects.  The high dose chemotherapy essentially burns and destroys many, many cells, not just the bad guys.

When the infusion was completed, and my numbed mouth felt normal, we all had nothing else to do but wait. Over the next three days my bone marrow would be completely obliterated, my immune system wiped out, my body left vulnerable and unable to make new blood cells, white cells, or anything else having to do with the bone marrow “factory.” There were three more days in which it was hoped most of the heavy chemo would have been metabolized out of my body and not interfere with the next step of the actual transplant. But, before the terrible becomes irreversible, the “healthy” stem cells need to be returned to set up their respective functions in the matrix of bone marrow that has now been effectively burned out so that a new immune system can be rebuilt quickly enough to stave off any disastrous consequences. I don’t remember how many tubes and IV poles were attached to me, but I had been reassured that potent antibiotics were onboard to prevent any life-threatening infections, the most serious complications of all that could lead to death, along with not having enough red blood cells, etc., etc. Steroids and fluids and who know what else were pumped into all the ports implanted in my body for these purposes. Fevers were monitored, as was everything that went in and out of my body.

The worst part of this process comes on about 5-7 days afterward and one can feel all kinds of terrible. I have a photo of me then, probably on one of the 3-5 days before the worst effects began to be felt. In it I still have hair, although it was already dying, and my skin tone is grey. The transfused stem cells, i.e., the actual transplant, need time to engraft in their familiar environment and begin functioning. Somewhere in those days I had several blood transfusions to replace blood cells that were too low or non-existent, but needed. And then I had a type of reaction that created excruciating pain in my GI tract whenever I swallowed. I remember telling my doctor it felt like I was swallowing big rocks that got stuck on the way down followed by another pain that felt like a sword slicing me in two from right to left that made me afraid to eat, drink, and swallow. At that point I believe I was given some fairly strong pain medications (something I only learned after reading my hospital notes a year later) and there are a number of days I don’t remember at all. Unfortunately, for my children, it was a harrowing experience and they remember much that I cannot and they worried mightily when they saw or heard me in that void I entered with the pain meds.

I was in the hospital three weeks and the last half was more tolerable than the first.

But, I had not been warned that the impact of the steroids would be to make it impossible for me to see/focus to read or write. This continued for weeks after I got home. The other side effect was the enormous amount of fluid pumped into me eventually made me feel and look like Jabba the Hutt on my discharge date; I lost 20 pounds of fluid over the next 3-4 days! I was weak, bald (but not really bothered by the baldness except to keep my head warm at night). Once at home I stayed in bed a lot the first weeks, barely able to drag myself up and down the stairs. Food tasted “not good” and this included coffee, my habit for at least 50 years. I ate rice, chicken broth, yogurt, and applesauce. I took 40-50 pills every day, hating every minute of that maneuver but knowing I had to do it. And, I experienced several weeks of the most terrifying nightmares I could imagine, strange but frightening enough that I began to dread going to sleep. Because I couldn’t see to write, I tried recording some of the details and thoughts I had then.

Eventually, I was able to push past the first few weeks of extreme weakness and begin taking small walks outside, even if only for a block. And, I had a protein drink I made every day that I believe made the biggest difference in my nutrition by literally feeding all the parts of my body trying to heal. It is plant-based and contains many substances that I knew were important building blocks for my blood cells. I mixed it with milk alternatives (almond, hemp; can’t do soy), frozen fruit, and chia seeds. I am convinced that when the doctor marveled at how well and quickly my blood values recovered it was due to this nutritional “medicine” I gave myself (and still do take).

So, what is the purpose of this long post recalling so much detail about what occurred two years ago? Some of what I’ve said is probably repetitive but not much. Today I needed to spend time alone in thinking very carefully about what I could recall because so much of what I want to recall is still lost to me. And, there is more going forward that is relevant to today, too. Last week I got the results of my annual cancer re-staging to see what’s really going on after 22 months of rigorous treatment. Since I did not achieve a remission with the ASCT and relapsed within a few months, all negatives for me then, I was put on a newly approved drug and regimen of oral three drug therapy at the end of 2015 in what was called “salvage” therapy. I have responded well to this treatment and although it is still considered salvage therapy and not maintenance therapy, I have achieved the strongest possible remission to date. Remission is not cure but it does mean a longer time without active disease. It is now possible that maybe, just maybe, I will be able to discontinue this salvage therapy at the next re-staging in the fall of 2018 and just be followed closely.

A reprieve from taking drugs is my fervent wish because the very drugs that keep the cancer at bay also have suppressed my immune system to the point of being extremely compromised. My goal is to rebuild my immune system healthily and with support from other forms of health care that I also believe in, too. I could throw some caution to the winds and just stop now, but the risk makes me hesitate. Although there is not yet a cure for myeloma, getting a long-term remission with little to no evidence of disease is what we are looking for in the coming year. I am changed in many ways by what happened and one of the thoughts I have come to is that the only way I got through most of the past two years was by staying as calm as I could, reading and researching on my own, weighing my choices with my own inner wisdom to come to the choices I made. In order to do the things I did, regardless of whether I was scared, in pain, or just a mess on any given day of treatment that didn’t go well, I had to push away/down a lot. And now, two years later, I realize more and more that a lot what was pushed away is now up for acknowledgement, too.

I truly believe that the entire experience was traumatic, deeply traumatic to my physical being in particular. I believe that I did, indeed, venture to the underworld in those days I cannot remember and that the nightmares were my psyche’s memory of the fear of dying that lurked, always, even if I willed it away as “not likely.” Today is strange because I feel what is sometimes called an “anniversary reaction” and it was not expected. Maybe now is the signal for me to begin writing the poems or prose that I kept track of with those notes and recordings. It is not writing I will post here because I envision this as part of a manuscript. I have much to say and need to say, even if only to myself. Thank you for listening today because I am alone, away from the ones, my children, whom I wish could talk to me about what they saw and felt. It was scary for them and some of what they’ve shared with me tells me more needs to be shared between us.

Today marks a rebirth, not a birthday. In the oldest stories, heroes and heroines go down to the underworld, even die, and once they have completed whatever task sent them there, they are resurrected, reborn, restored to the world and themselves. At least if they are successful in their journey. I was and am strong enough to have literally given birth to myself again through my own body’s cells and strength. I am grateful. I am sometimes sad. I am changed forever and still adapting. Aren’t we all, whatever our task, our heroic moment, our ability to keep standing even if dragged unwillingly into a new life?

 

 

 

 

Changing Seasons

I wait each summer for the autumnal equinox, for the Earth to tilt away just enough from the Sun so that the heat of summer eases.  Of course, the daylight shortens and has been steadily decreasing the past few months, faster than I expected.  Summer is not my season and this year I hid out from the heat, which wasn’t as bad as some places, but it was steady and constantly over 90 degrees all of July and most of August.  Living out where I am, on ranch and range lands, the threat of wildfires is constant, mostly from lightning strikes, and there was a lot of smoke the past few months that came from all the fires farther west, too, in California.  Northeastern Nevada is dry high desert, a lot of sagebrush and other kinds of vegetation that burns fast in the winds.

Since arriving here in mid-March, I’ve had a long time of adaptation.  Someone told me that it takes at least a year to adjust to a new place and I don’t yet know how long I will be here.  My adjustment has been sporadic at best.  I love the mountains and open space here, the fact that we live on a dirt road 20 miles away from Elko, the “big” town on Interstate 80.  Elko is a boom/bust town and right now the boom is gold mining done everywhere, it seems, in all directions, miles away from town where it isn’t visible.  Miners are driven out in company buses, sometimes several hours away.  The work shifts go 24 hours a day.  The mining industry means that the people with money are the miners and so you see a lot of new, shiny pickup trucks around town, rents are high, groceries are expensive, and the town is both a small town with people who have lived here a long time, for generations, and then there is this other element that brings problems.  Meth is a problem here.  Lack of adequate medical and mental health resources are problems.

I’ve tried to remain open-minded as I’ve tried to “learn” this town and population, but it’s been tough and exasperating at times.  What I have tried most to learn is what these rural people think matters for they pretty much voted for Trump en masse because of many frustrations and longstanding feuds with “the government” over how rangeland is managed as well as unexamined ideas about a lot of other things. Most of Nevada is technically “owned” by the U.S. government, regardless as to whether it has been traditional native people’s lands or open range “public” lands that ranchers just assumed was theirs to use.  (This is the state that gave us the Bundy brothers and their dad, Cliven Bundy.)  The ranchers usually have been here a long time and mostly run cattle.  Nevada, though, in my mind, has always been a state of exploitation:  mining, gambling, prostitution, military bombing ranges, nuclear testing that exposed many unsuspecting people in the eastern part of the state and Utah to radioactive fallout because, as I read in one book quoting from government documents, these were “low use populations” and, therefore, ok for what we now call “collateral damage.”  I try to square my head with my heart when I am in Nevada.

I spent more than half my childhood here, over in Reno and up at Lake Tahoe, too.  The mountains were my protectors and I thrived, in a weird way, in the outdoors there that was so dry.  In elementary school there was a “trend” among girls to tuck blue belly lizards under the collars of our shirts.  I, therefore, caught my own lizards, made them a “home” in a box, and actually wore them to school on the days I wore shirts with collars!  In Reno then there were still places with ponds where I went frog hunting and captured all kinds of pollywogs in various stages of development.  I was in love with horses, drew them obsessively, and actually “rented” them by myself at in-town riding stables just to ride in town.  I collected rocks and turquoise was no big deal then.  That landscape around Reno, a valley surrounded by mountains on all sides (some higher than others that maybe some would call hills) gave me a sense of place and protection that I still feel as “home” whenever I am in the Great Basin.

We had a family friend, too, a Shoshone man whose adult daughter was our babysitter. His wife taught in a one-room schoolhouse not far from where I am now and once we got to visit her at that school.  I remember seeing tons of long-eared  jackrabbits jumping in front of the truck headlights as we traveled out to Beowawe (an Indian word with varying meanings.)  Now I seldom see a jackrabbit.  Out there in that open, sandy desert spot with the schoolhouse, I contemplated whether I could bring myself to pick up a horned toad I found (didn’t) and then saw a herd of wild horses off in the distance, kicking up dust as they ran down a ravine.  Our friend was called “Pa” by everyone and he worked as a ranch hand and sheepherder, too.  He brought me deer venison that he’d made and coffee cans full of piñon pine nuts, which are a staple of the indigenous people here.  I look back on those days and wish I’d known to ask more questions, to learn more, knowing now how lucky I was even to be exposed to some of this wisdom.

Reno has changed drastically, of course, and the population density is rapidly growing from transplanted Californians.  I don’t think I can go back there; these days I don’t believe i can “go back” to anywhere, so much has changed for me in the last three years. Changing seasons and changing reasons.

Native American tribes knew how to survive in this dry landscape and I have marveled at what little I’ve learned.  The Shoshone people were/are mostly here in Eastern Nevada.  One of the most recent acts of resistance came from two Shoshone sisters, the Dann sisters, who stood up as long as they could to not having their land taken from them, the land that belonged to their people, their family, and their cattle, sheep, horses.  I think about them often with admiration.  Read about them here just for starters but maybe you’ll be interested to find more:  https://en.wikipedia.org/wiki/Mary_Dann_and_Carrie_Dann

The late summer colors on the hills are all shades of sere, brown, tan, some ochre and red streaks.  The grasses that have died back are golden.  Sagebrush is sturdy but paler, less vibrant.  I watched all kinds of wildflowers pop up in different sequences throughout the summer, at least out here along the road where creeks run down from the mountains behind us.  There was a splurge of butterflies, too.  I try to watch the Full Moon come up from behind the ridge and I also step out on New Moon nights to be dazzled by stars.  The mountains are deep blue in the morning, just before the sun rises and then their contours and shadows change often throughout the day.

I am blessed to be here for however long I am, even though I am anxious and bothered by so much of what is happening in our country, our cities, the world beyond us, and the awful national and local politics unraveling so much that I value.  I am just as sick to my stomach as many when I get up some mornings and see the news but that is not what I write about here.  However, it is hard for me to write here, too, about the beauty I try to hold close even as my mind reels with horror at what is happening because of fear, xenophobia, racism, poverty, greed, hatred, ugly Americans, and a denial of the forces of nature that are, indeed, changing and not in our favor.

And today I must admit I am not happy, really, with all that threatens us, much of it already out of control or fast approaching it.  What is in my heart hurts.  Never mind my questions and unknowns about what is in my body, the cancer.  I am trying to persevere and write more but this blog may be as dry and worn down as those brown hills I scan everyday for signs of smoke or fires.  Maybe when the snow comes and covers it all, I will hibernate and emerge again next spring.  I don’t know but these are changing seasons, and not just the weather.

A Short Stint at the 696 Ranch, Texas

It’s August hot now.  Hot in the high desert of Nevada where I am now living.  Hot just about everywhere in the West and here July was a month of 90+ every day.  Too hot for me to wander outside, I am sorry to say.  Waiting for October and beyond.  All the snow has melted on the Ruby Mountains behind us and I haven’t been up in Lamoille Canyon for months, ever since the tick came home with me after I sat awhile at my favorite place!  They say the ticks are profuse this year and since this one traveled up my jeans and later appeared walking across the bridge of my reading glasses, I decided to wait until weather gets cooler and crowds less.  I miss the beauty of the canyon, though.  Day to day I focus on the sagebrush, a shrub I love dearly, especially when the heat or a soft rain shower frees its scent.  We are surrounded by fires too often and the air is filled with smoke and skies are hazy.

But, last August I was in Texas, on a friend’s ranch about 50 miles west of Fort Worth. While there for six weeks I helped out with some of the lighter chores given that I was only about nine months past my stem cell transplant and still recovering my strength.  The August heat in Texas is tough.  Hot and humid.  Occasional thunderstorms.  My friend has A/C but outside I was usually reduced to a big sweaty human, my t-shirt soaked as early as the morning when I bounded out of bed and started the first minimal chores around 7:30 a.m.  It was ridiculous and I never adjusted, but I kept trying.  I perspired just standing.  It reminded me of the early weeks when I first lived on the Big Island of Hawaii about 26 years ago.  I would sit in a chair and want to cry because the sweat just drizzled off me when I was absolutely still.  Eventually, I adjusted.  But, Texas in August is another kind of hot.

So, I did the best I could, which was probably less than good enough for my friend and his then 85-year old mother who lived there and took care of the ranch year round.  She could work circles around me any day!  And my friend, well, he didn’t sweat!  So, there I was in the barn stall where we were working with a young colt, getting him accustomed to humans (not easy) and the sweat ran down my face, into my eyes, while I just stood there keeping an eye on the mare and blocking the colt’s efforts to escape my friend.  It was pathetic, this body.  Yet, I was learning a lot, despite the heat, and while it made me miserable in different ways, I came to appreciate the Texas landscape in a way I had not during the previous two years of my treatment when I lived in a suburb outside Ft.Worth/Dallas.

My friend gave his mom a longhorn heifer for her birthday and I fell in love with that heifer, despite my initial fear of her horns and bulk.  Loretta is her name and she was a sweetheart.  I also fell in love with the brood mare who had given birth to the small group of horses on the ranch, two mares and the colt.  I loved watching the hierarchy of deference to her that required us to pour morning feed into her buckets first, before the others.  Loretta didn’t get that memo, though, and often tried to eat the horses’ grains and maybe the only one that shooed her off was the older mare.  I loved watching how the brood mare protected her colt, who was then only about four months old. His sibling sisters were two and one year(s) old, respectively.  I didn’t know that horses were so afraid of humans and that it took a lot of gentle, patient, non-threatening effort to even get the colt to accept our touch.

There were also three barn cats, two of which were expert hunters that routinely left rodents on the doorstep, and an old feline that stayed in the barn and kept to the high places of beams.  I learned to love them all.  And then there was the dog, Roper, a smart aleck that could open doors and obey when he wanted to but also was afraid of loud noises. So much so, that he took off for a neighbor’s ranch several miles away every time a loud noise bothered him.  Keeping track of him was sometimes a big pain, not to mention the delight he got from rolling in freshly dumped cow poo. He was my responsibility to train for a crate and we did that every morning before I even had coffee! Perhaps that was my best accomplishment in my friends’ eyes:  I got Roper to do the crate.

My friend’s ranch has lots of grass, for the horses and Loretta.  It also had lots of mesquite that is considered a nuisance plant despite the fact it actually gives back nitrogen to the soil, a useful function.  I saw my first devil’s claw, another nuisance that could catch and wrap around the horses’ ankles.  Mesquite had thorns that caught and tore.  There was the most magnificent old oak tree spreading its incredibly large crown of leafy branches across the front of the house.  It was perhaps one of the most beautiful trees I’ve ever seen and many small birds flitted around it, the most colorful being a painted bunting.  I was lucky enough one day to pull a tiny blue feather out of the bird bath, most likely from an Eastern Bluebird.  We were also graced with the presence of a pair of nesting roadrunners, very unusual.  We watched them everyday as they went to and fro with nesting materials.  I watched them hunting in the field, the way they pounce on whatever strikes their eating fancy.  They are ever watchful and one day they disappeared, making me wonder if something had invaded their nest and taken their eggs because we never saw chicks.  Snakes can crawl up and eat the eggs/chicks and we learned that the bumper crop of cicadas was already causing copperheads to mass around the bases of tree trunks in the evening hours.

Snakes are a part of Texas, of course, and I was ever alert in the tall grass and just about anywhere I put my feet.  I didn’t have cowboy boots, which would have given me a little more assurance; only my lightweight hiking boots, and it seems I spent a fair amount of time with my eyes on the ground too often.  One evening, after we’d gone out to watch yet another gorgeous sunset (Texas has amazing sunsets), I was walking back to the house and suddenly saw a copperhead gliding rapidly, perpendicular to my open-toed sandals by about eighteen inches.  I was startled but more impressed with how beautiful the snake was and I watched it head for the safety of my friend’s rock garden while he hurriedly tried to find something to kill it.  Secretly, I was rooting for the snake.  Copperheads were around, and my friend’s mother told me some stories about seeing them around the house.  Rattlesnakes were another concern but I guess they’d slithered away from all the human activity, which was not the case when my friend first cleared the land and built his house.  Still, I listened for them and watched.  Like I do out here in Nevada where their camouflage is so perfect I doubt I’d see one, all the more reason to keep an eye out.

Despite the heat, humidity, physical discomfort and actual pain I felt, I came to love the landscape, to want to know more about it.  I think it was about open space, just as it is part of my love here.  People were nice and hardworking, just like the ranching community here.  It’s a different life, this rural life.  Not one I can tackle alone at this point in my life, but one I can appreciate.  People work hard and I now have far more familiarity with cattle and horses, something I like.  My friend’s mom eventually got another longhorn heifer to keep Loretta company.  I keep wondering if Loretta will remember me if ever I get to go back to the 696 Ranch and call for her the way I did when I tried to lead her, carrot and stick style, with a bucket of grain, leading her up to the upper portion of the field where we could watch her more closely.

One more thing:  some things are bigger in Texas.  It seemed the crows were bigger and the grasshoppers were huge!  Didn’t see many hawks, just lots of buzzards that were efficient scavengers of dead things.  In the fall a decision was made to put down the brood mare due to a very painful arthritic condition.  It made me sad.  My friend told me the vultures cleaned her bones within weeks and I guess that’s what I learned about life out in Texas:  appreciating beauty and life, letting it go when necessary, and never letting the heat and sweat get you down.

The Wild Outside and a Rooster

Out here in the sagebrush-covered landscape abutting the Ruby Mountains, I watch the changing colors that appear as different flowering plants bloom, die back, are replaced.  At first, in early spring, it was the yellow of mule’s ear stalks and the red-orange of Indian paintbrush, all contrasting with the pale grey green of sagebrush.  Then came tiny blue flowers that my sister said were wild chicory creating a blue haze across the yard.  Daisies, red Oriental poppies, and white-pink peonies followed. Along the fence lines there were dense clusters of small pink roses, primrose or wild rose, I don’t know which.  One day I saw a patch of wild iris in a cow field, delicate white and lavender.  They were gone a day later.  Violet red clover appeared next, along with another small, unnamed blue flower, and lupines, both yellow and purple.  They are small buds, not like the wonderful fields of larger lupines I cherished when driving the canyon highway that took me to the Yuba River in Nevada County years ago. Recently, another group of colors suddenly appeared:  butterflies.  The one that intrigued most was a tiny pale blue one, like the pale blue ones I once watched drinking water from a puddle on the bridge over the south fork of the Yuba River.

There are birds, mostly thieving black-billed magpies who raid the chicken coop of its eggs.  Northern harriers, kestrels, red-tailed hawks, and turkey vultures are here, too.  The best bird is the western meadowlark that sings mostly in the early morning and at sunset.  They are hard to see but wonderful to listen to.  And, another of my favorite birds, the northern flicker flits among wooden fence posts and telephone poles.  All of these flowers and birds are the benign “wild” life here.  An invasive white flowering weed called white cap threatens livestock and there is a concerted effort by the state to get rid of it.

I haven’t been up in the Lamoille Canyon for a while–ever since I came back with a tick that slowly climbed up my jeans and eventually began a trek across the rim of my reading glasses!  I had been sitting by a creek, amid new spring grass and rocks, ignorant of ticks. The heavy precipitation of the past winter has made for a bumper crop of ticks out here.  I miss the canyon but now that it’s summer, there are many people there on weekends, when I might have access to a vehicle and could drive up there, so I wait until fall or winter again, to explore.

What isn’t benign are the other critters that call this place home:  coyotes, raccoons, and mountain lions in particular.  Once, while on a walk, I discovered mountain lion tracks not far from the house, on the dirt road.  There were two goats living here then and everyone kept telling us that the mountain lions would get them eventually, although there are plenty of mule deer for the cats to pursue and eat.  The mule deer gather in the yard at sunset and I’ve seen larger herds of them in the pastures near town. We gave the goats away.

Instead, we continued to live with eight hens and a rooster.  I’d never been around chickens and the rooster was an entirely new threat because they are hard-wired for aggressive behavior toward anything or anyone considered a threat.  He never got me but he tried several times, even when I was scattering scratch feed as a treat.  I read up on how to deal with roosters and felt I lacked the courage to pick him up and carry him around in an effort to assert my “alpha” status.  Instead, I studied him.  Advised against looking him in the eye, I stared into that beady, bright jewel.  I watched him feign disinterest in my presence by pretending to forage, always looking at me sideways.  I made sure he was never behind me and I usually carried a big stick to push him back, gently but firmly, when he attempted to fly up and get me with his threatening spur.

I watched the way he protected his flock of hens, herding them into bushes for cover when the shadow of a hawk passed overhead.  He was always present, always on guard and ready to fight or at least strike at the hand that fed him.  There was a small coop that really was not adequate to keep out predators even though my sister had been lucky for a year and nothing ever harmed the chickens.  The rooster would crow whenever there was something threatening at 3:00 in the morning.  And, he would crow whenever I walked away and he believed he had “won” a battle.

But, one night about two months ago, the benign co-existence with predators turned deadly.  We never heard the rooster crow and knowing a rooster will fight to the death to defend his harem, we figured he was the first one dragged from the coop and killed.  We knew nothing of what was going on in the dark until the morning arrived and I only counted five hens.  I searched for signs of what had occurred but found little:  no bodies, no blood, no paw prints in the iced and puddled ground around the coop.  I found small groupings of feathers and identified each color with a particular hen except the white one who left no trace.  We believe a group of coyotes got them for coyotes take their prey without leaving any sign; there was no other explanation.  I was sad that the rooster died for as nasty as he could be, he was also gloriously beautiful to look at with his russet mane of neck feathers that fluffed up when he wanted to attack, the blue-green of black tail feathers when the sunlight struck.  I missed his jeweled red eyes that always watched.

The next night another hen was taken, again with no sign.  My sister and I had no means to fortify the coop and so we loaded a wheelbarrow over the torn chicken wire, leaned heavy wooden pallets against all possible openings, and boarded up the small entry to the coop with sheets of wood and a stack of logs.  It was a bit absurd but we didn’t know what else to do.  Since my bedroom window is closest to the coop, I found myself unable to sleep soundly, waking at every sound and peering out the window to try to see what made any noise.  It was now two days since the massacre and four hens remained.  I saw the biggest raccoon I’ve ever seen approach the coop and I banged on the window to startle it away.  I didn’t even know there were raccoons here since there are so few trees.

But it wasn’t a raccoon that killed the first groups of chickens.  I read that raccoons are vicious killers that will kill all the chickens, even if not eating them, and only eat parts, leaving carcasses and feathers, a mess.  We’ve continued to guard the chicken coop these past two months, knowing that there are still predators who can prevail.  The remaining hens are targets for hawks and without their ferocious rooster rounding them up whenever shadows pass overhead, I watch to see if they will huddle out of sight on their own.  They are free ranging on the acre here during the day but have somehow managed to remain alive.

My brother-in-law works on the other side of the state and only comes out every few weeks.  He scoffed at our overly protective efforts to keep the chickens safe in their coop at night and removed all the wood and wheelbarrow, put down new frames of chicken wire and marked the perimeter of the coop, having been told that human urine would discourage predators.  We shall see.  But for now, I named the survivors and study them instead of the rooster.  They are Boo, Ruby, Skeeter, and Skitter-Scatter.  The latter is the perfect example of Chicken Little if only she had a voice to cry that the sky is falling.  I like the chickens and must outwit the magpies that steal their eggs.  Now, the chickens have taken to hiding their eggs and I am lucky if we get one each day, instead of three.  One chicken is peculiar and I’m not sure what it is, a delayed male or what since it does not lay eggs and has small spurs, unlike the others.

I miss the rooster and I miss the noisy conversations I heard each morning when the chickens gathered outside my window.  I wish I knew what they were saying.  There is an egg song each chicken has for when she’s laid an egg, but I don’t hear those much now, either.  I wait and watch, wondering if they will make it through the summer into the hawk season in fall when hawks are migrating.  I wonder, too, how I will make it as well.  There is beauty here and I appreciate it while I can, but these times are not benign and a healthy respect for the landscape attends every encounter, as do my observations of a rural population that is clinging to a western way of life that may be past its time.

Remission and “Re-Mission”

After a long time of silence, silence that I considered a necessary part of my healing, I am returning to this blog.  So much to share, retroactively, of what some of my wanderings were in the last year of silence.  But, today, everything is present tense. I relocated to yet another sister’s home in my ongoing quest to get back on my feet, literally and economically, after the challenging medical circumstances of 2014-2017. I came here in mid-March and it is a beautiful place, but not one I can settle into without a car and a job and affordable housing, all outside my reach.  I am lucky to be amidst this beauty for so long as I am allowed as I keep figuring out the next direction for finally making a more permanent home for myself, at last.

A complete remission has been achieved and maintained now for almost 20 months since the ACST in late September, 2015.  Yes, I did relapse too quickly after the ACST (autologous stem cell transplant) and that makes me sad after going through all that it took out of me to do the ACST.  But, I still believe the ACST did enough to lower the tumor burden of myeloma to the point that it is no longer in my bone marrow as a result of the medications I have been taking since late December, 2015.  Unfortunately, those drugs are obscenely expensive (as I’ve probably said before; having risen in cost to $22,537/month) and that is the cost of my remission and continued “good health.”  I could not afford this without help that I have received from the Leukemia & Lymphoma Society and a reduction in out-of-pocket costs granted by the Social Security Administration.  Those of you entering Medicare years should know that Medicare has been legislatively prevented from negotiating lower prices.  Also, the drug companies cannot offer any help in reducing the cost if one is a Medicare patient, as they will for people who are either uninsured or privately insured.  In short, Medicare is paying the full retail price of capsules that cost, respectively, $3247 ea./month x 3 and $610 ea./mo x 21).

I write this as the country has been thrown into fear and anger over what will happen to their healthcare as a result of the current Republican vengeance against the Affordable Care Act and Medicaid; it is hard not to fear that they will come after Medicare next.  I am one of the many whose medical care to fight this cancer was completely covered by the insurance exchanges created by the Affordable Care Act.  Yes, I paid for a more expensive plan each month, and I am grateful; neither I nor my family were left with a huge monetary debt for that care.  Yes, if the ACA had not been in place, I would have been on Medicaid and my outcome may have been different as many of the specialists I sought out in their medical institutions did not accept Medicaid where I then lived.  I am a lucky woman to have gotten this disease under control before I became eligible for Medicare.

Now, though, I am living in a remote rural section of northeast Nevada; it is officially referred to as frontier by Nevada State agencies.  Healthcare here is minimal and disturbing to me in its lack of access.  The gold mining companies near here maintain their own medical clinics for employees who do not need  to patronize the local providers outside those networks.  There are not enough resources available for the population of what is considered the third “largest” town in Nevada. There are three vendors who provide air flight services for transporting patients to Salt Lake City or Reno in the event of more critical medical care or emergencies that cannot be managed here.  I live farther out from Elko, on rangeland up against the base of the Ruby Mountains.  I travel to Salt Lake City to the University of Utah, a 4-5 hour drive one way, for my check-ups that, until recently, were every month.  I must use FedEx to ship my more complex blood tests to SLC as well as there are not the resources to handle them here.  Yes, there is a hospital–a for-profit hospital.  Yet, it cannot deliver any complex chemotherapy such as what I might need in the future when these oral drugs may no longer be effective (an expected outcome with multiple myeloma).

Additionally, I have yet been unable to locate a primary care physician, who I must have on board locally, because most of the doctors I have been referred to do not accept Medicare–this in a rural community with many older residents!  Everyone must travel, often in another direction west, to a very small town where they can see Medicare-associated doctors.  Luckily, I am in good health with respect to the common infections that could be a problem for me because my immune system is still extremely compromised.  I tend to think this is because I have spent so much time in solitude the past few years.  The children of parents who do not vaccinate their children present a threat as I am vulnerable to all those childhood diseases that periodically flare into large outbreaks, e.g., measles, mumps, chickenpox.  My immune system still cannot accept any live vaccines to replace all the immunity I had built up over a lifetime before the ACST. Again, I am lucky to date and I appreciate what my body has been able to overcome after the rigors of the ACST.

I am talking about all this now because I have been in several rural communities in the past two years.  The people in these communities voted for Trump and the Republican majorities now in control of the House.  They believed he cared about them or maybe they were just fed up and sending out a reckless message, not looking hard enough into what some of the proposed agendas are going to do to harm them.  (It’s not just healthcare; it’s also NAFTA and midwestern farmers liable to be negatively affected by some of the proposed repeals, to name only two of many more.)  I read periodicals dedicated to their concerns, philosophies, and frustrations with many issues in an effort to understand the “other” side or at least the differences between us, even though I do not agree often and am struck by the vehemence of a poisonous anger and what they believe has been their victimization.  I want to hear the other sides but, unfortunately, there is a serious lack of critical thinking in this country, on all sides (if one must parse us into “sides”).  I wonder how it will be alleviated, both in our educational systems and among those outside school?  I wonder what I can do and will do to make a difference? don’t yet know how that can be done on a larger, more comprehensive and compassionate scale that will make a difference to the current chaotic, mean-spirited, ideological differences driving behavior that shocks and frightens many.  And the underlying problems of racism, misogyny, classism, anti-LGBTQI  legislation and persecution, plus unconscionable levels of poverty and homelessness still do not garner the empathy or willingness to change dangerous attitudes that are impervious to learning to see the “other” as a human being denied the dignity of essential human rights even here in our country.

Some of you who read me  (and you are a small number), you need to know that it was never my desire to speak of political things in this blog, and I still do not want to use the blog for that purpose.  BUT, I look out from the isolation of where I now live, knowing I must return to a city where I can afford to live and have some sort of income that sustains me (ageism is alive and well, too), and I know that I must understand what is possible going forward, despite my despair about what I see happening in the world at large. There are good people on all sides but there is such bad behavior being exercised, too, by people I would consider harmful, bad, or just plain mean. Rumi advises us to be among the people who help your being and I wish I was more able to live among such people now or create a way (or job) that will help me not only work on behalf of such people but, even more urgently, make a positive impact for change among those who “do not help my being” at first glance but help me grow and maybe allow me to help them grow.  Wishful thinking of an idealist but I am who I am, always open to change and growth, always committed to doing what I believe is the “right” thing.

Thus, I ponder what it will mean to construct a meaningful “re-missionr” for my life.  Mission is a guiding principle for me, having spent most of my years in non-profit work.  I believe in social justice, environmental justice, racial justice, and the power of women to resist a sexist backward effort to take away any “rights” we have gained in the past 50 or more years.  I am searching for how to best use myself in this life.  Cancer has detoured me for several years; that is inevitable once one gets a diagnosis of an incurable disease. But, my life is not about cancer now.  It is a part of who I am and it is under control.  In fact, again, I say I am lucky that this is what I have had to deal with because there is life-saving treatment available that makes it nothing more than a chronic disease condition.  Yes, there are a few side effects I dislike, but I have learned to live with them.  Thankfully, I am now able to return to a job search and my writing.

Silence is part of healing; but, silence is not going to heal our communities. I’ve always believed that I would affect people’s lives for the better in a one-to-one encounter or exchange.  I still believe that, both with my writing and my actions.  I don’t yet know where I will land by the end of this year; I am searching.  I am a warrior, despite my wounding.  And, many of us, because of our wounds, are people now that sometimes still come from a place of fear and narrow-mindedness as a way to protect; this is just as true of liberals or progressives or conservatives, etc., all those labels we adopt that ultimately will mean nothing in a personal crisis requiring life-altering efforts to heal or survive a major crisis affecting all of us.  I am just as flawed and working on what matters in terms of openness and commitment to values that are non-violent in action and words.  Sometimes, it is hard, embarrassing to realize, disappointing.  But, I use this blog to talk more about what is amazing in the world, despite what is awful; it is a counterbalance and I hope you will still be interested, regardless of how different we may be in our thinking. This is about connection, not separation.  Thank you for following me.

P.S.  I don’t post much on Facebook but, I have used Instagram to post photos of some of the landscapes where I have wandered in the last year; you can find me as fugubug (fugu being the Japanese word for the pufferfish).

My Year of Special Moons: Blood Moon, Supermoon, Black Moon

I’m back—on a Black Moon!  So many moons have come and gone and some were incredibly special or rare, all coinciding with pivotal moments in my year.  This week I passed the One Year Anniversary of the autologous stem cell transplant.  I believed it was auspicious (in a good way) that the ASCT occurred during a Supermoon Blood Moon last September.  I remember how Michael and Ursula stayed with me in the hospital so that we could stare at the moon as it rose over Dallas, watching for the eclipse of a supermoon that turned the moon reddish.  A blood moon for my blood cancer healing.  Not a cure but a healing.

The past year has been an exercise in patience and endurance.  Silence has been my mode, more than I expected, so that I could not bring myself to write any new posts since the end of March.  Too much change to assimilate and I was exhausted mentally and physically.  I yielded and kept faith in my future but also focused on being present, even when the “present” was overwhelming at times.  Some things still feel permanently changed by all that I went through in 2015.  I am still taking stock of those changes and trying to accept them.  Overall, though, I feel so much better than I’ve felt in years, other than a few issues with drug side effects that accompany my days. Grey curly hair still confounds my self-image; I can’t say why but I think that particular change was so abrupt.  Not bad, just abrupt.

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Today is a Black Moon, the second New Moon in one month.  In all my years I’ve never heard of this but again feel it is auspicious (in a good way).  I am in Texas now for the annual restaging of this disease with lots of labs, x-rays, and yet another bone marrow biopsy.  Next week the oncologist will meet with me and give me his opinion on the results.  I have done well since starting a new oral chemotherapy regimen at the end of 2015 and I am very optimistic.  The disease has been controlled for now and I am anxious to get on with a new year.  They (patients and medical staff) refer to the date of the stem cell transplant as a new birthday.  I scoffed at this last year but this year I did, indeed, sing “Happy Birthday” to my cells and now have two kinds of birthdays to remember.

Some of us pay attention to the Moon; I always have sought it out in the night sky and sometimes wished it away when I wanted to see more stars.  New Moons symbolize new beginnings and an accompanying energy of change and action.  This Black Moon appears just as I let go of a year’s worth of waiting to reach this milestone of finding out how well my body has healed.  Of getting necessary immunizations, finally, that were wiped out by the high dose chemotherapy last year.  I believe in the body’s power to heal better when we work with it, not against it, and give ourselves time to heal.  Some might say that chemotherapy works against the body as it is powerful and toxic.  But, I am so very fortunate to be a beneficiary of the newest drug therapies that target the malignant cells and do less damage to the healthier cells.  I still wonder how this unpredictable disease will go and I wonder about how many years I have that are years when I feel stronger and healthier, as I do now.

Today’s Black Moon appears to me as an opening into new beginnings. I will bring my light into the darkness and discover what is next.  I am ready to let go of all the waiting and live with less resistance to the boundaries this past year imposed, ready to make new maps for myself.

I went up to Nebraska at the end of March and still am adjusting to that relocation/dislocation.  I missed the sandhill cranes, after all.  The spring was too warm and the birds left early.  Summer was hot and humid which, for me, translates into inertia.  The best part were fireflies that appeared at dusk.  Soon I will return to Nebraska and live with how autumn unfolds into winter, a midwestern phenomenon that may make me wish again for warmer weather!