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!

 

Full Moon Gratitude this Easter

I was lucky enough to see the night sky recently, with Jupiter holding its own beside an almost Full Moon.  Good omens of abundance and new energies. Thus, a quick posting, after another silence (to be filled in or ignored because moving forward and not looking back are where I find myself now). I have reached a partial remission that probably won’t become complete but means my cancer is being controlled with the current treatments. Doctor hopes it could be years before disease progresses, at which time there will be other effective meds.  I am thrilled and feeling so much better after a few hard years that coincided with graduate school and now I am ready and able to follow new paths first dreamed of then.

On Monday, 3/28, I will also be going up to Nebraska to stay with another sister for an indefinite period of time.  I’ve been packing it all up and getting ready to flex some wandering muscles as I have a fondness for Nebraska’s landscape, old pioneer cemeteries at the edges of cornfields, small towns with quirky architecture, lots of rolling hills, and friendly people. Best of all, I just might make it up there in time to once again witness the great Sandhill Crane migration spectacle along the Platte River.

sandhill cranesThese prehistoric birds have been doing this, same place and same time of year, since the Ice Ages. They’re like flying dinosaurs with their harsh cries and peculiar way of landing with feet dropped down like a parachutist.  They congregate in the waters of the very shallow Platte River at night for safety from nighttime predators.  I saw them do this about 13 years ago.  During the daytime they all spread out across the local landscape, foraging leftover corn kernels from harvested cornfields, storing up for the rest of their journey to the far north. The Platte River congregation is a pit stop of sorts. As dusk fell they all flew in to crowd together by the thousands in an adjacent cornfield.  As soon as twilight dimmed them, they suddenly reappeared in the river, looking like blue shadows on stilts. It was all silence and invisibility in the darkness.

sandhill cranes 2

The other spectacular sightings I have yet to witness are being present at dawn when they all rise up at once, noisy and awesome with thousands of wingbeats, and the wildly exuberant mating dances between two cranes.  It makes my heart happy to know they can still do this migration and that I have been lucky enough to witness it.

Last of all, I’ll insert a photo here of my gray plush head, taken a few days ago.  Hair is growing in, still very grey and unwieldy (sort of like me, I guess).  Recovery and spring are in my blood.  Cancer will only be a footnote to my life for a long time to come, I hope.  I’m ready to follow my nomadic spirit.

Photo on 3-18-16 at 4.27 PM

(All crane images retrieved from Google Images; credit Nebraska Radio Network)

 

Where And How Do We Wander When Stuck?

I doubt anyone likes admitting they’re “stuck” in any way.  It could be my sister stuck in her vehicle in a snowdrift, many friends and myself stuck in difficult economic circumstances or soul-sucking jobs, stuck in our creative processes, ebbing motivation to get out and experience more life in this mixed up, suffering world we live in but want to remember as beautiful, too.  I felt stuck for months after the stem cell transplant, made more grueling when I had such trouble reading and writing, my main ways of wandering when stuck.  No sooner was I free to wander out among strangers again than I got a bad case of flu and ended up stuck again in the hospital, albeit briefly, this month.

For my 65th birthday, though, a few weeks ago, I wanted to wander away from where I am now.  I went to Houston on a short road trip with my daughter, our destination a beautiful art museum called The Menil Collection where there are several buildings, including The Rothko Chapel and a Byzantine Fresco Chapel. It had been a 30-year dream of mine to visit this place at least once in my lifetime.

While my heart wants to wander more in the outdoors, that isn’t happening yet, so I rely on art to feed my mind and soul, these consciously restless urges to wander and learn. Wandering is often about surprise, encountering the unexpected or unimagined, and that becomes a source of joy and inspiration, awe and perplexity driving curiosity.  In our brief time at The Menil Collection, I learned many things and came back ready to write about some of them.  Then, I got sick, and some of the magic has worn off but I am so satisfied that I made that trip when I did.

Some of us prefer to wander around a museum without speaking, without even interacting too often with a companion.  We like to discover on our own and come back to share the discoveries.  Some museums inhibit that impulse to wander, but The Menil had lots of space and light.  And, thankfully, no curated notes of interpretation, just the names of artists, their artwork title, and medium employed.  Space and light have always been my guides, like my own version of Sirens calling me, so to speak.

The Rothko Chapel is an ecumenical space built to contain magnificent large paintings by Mark Rothko.  The interior changes with the light falling through a ceiling skylight, and thus the paintings change, too.  The space is meant to be quiet and reflective, and I was fascinated that so many students from a nearby university dropped in at the end of the day to sit and meditate in front of the paintings, even if only for a few minutes, seated on meditation cushions on the floor, or wooden benches set out like pews.  Art is about light and shadows as much as any subject.

In the Byzantine Fresco Chapel there was an installation that was literally out of this world. Again, I wished for more time to sit with it, an immersive experience of sitting in a darkened building with high ceiling, watching a gigantic mobile of mirrors turning in response to sound that was based on the “Pythagorean Theory of the intervals and harmonies among celestial bodies.” (Pythagorean Theory of Music and Harmony).  The sounds were literally taken from outer space recordings captured by The Voyager I and Voyager II stellar spacecrafts in 1977.  While there is no audible sound in space, the tones are audible to human hearing back here on Earth;  the variety of tones were created by “the interactions of the solar wind, electrically charged particles emitted by the sun, with the magnetic fields of planets and moons in our solar system.”  The music of the spheres is vibrational and harmonious after all, just like every living thing on this planet in its purest state of being, intention, or evolution.  My wandering was both inward and outward toward the reflections cast by the 150 mirrors twirling in response to those vibrational tones as they thundered throughout the building and vibrated within my physical body.  It was an awesome moment in time, not to be repeated but to remind me of how amazing the world is, even when we cannot wander out into it, let alone into outer space (most of us).

I also learned about the philosophy of how art, spirituality and social justice were the interrelated, interdependent objectives for the de Menil’s approach to collecting, commissioning, and sharing their collection with the world; the museum is free (as I believe all art museums should be).  The story of the Byzantine Fresco Chapel is stunning in terms of the good that came from the de Menils managing to purchase and restore exquisite, ancient frescoes that had been stolen from a Cyprian church and broken into fragments to sell, illegally.  The de Menils built the Byzantine Fresco Chapel for these frescoes, with an agreement that they would display them in a consecrated space and after 15 years, return them to the Holy Archbishop of Cyprus, which occurred in 2012.  The chapel was then deconsecrated and this amazing installation, “The Infinity Machine,” is the first art installation presented, with a rotating calendar of installations in the future.  At first I felt disappointed to miss the frescoes, but how lucky I was to experience “The Infinity Machine” and continue to wander in the places it has sent me creatively!

Maybe most of you will never make it to Houston and maybe art museums aren’t your thing, but what I wanted most to offer here today is that art nourishes us in so many ways, so many dimensions, as do literature, outdoor exploration, genealogical research, antique hunting, used bookstore wandering, etc., etc., ad infinitum.  I have felt stuck for a long time, in various places or situations I wish were different.  I have not had the same, familiar access or means to wander in the ways that have always nurtured my soul.  I haven’t seen Mono Lake in years and I miss the rugged coastline of California’s Pt. Reyes Peninsula, the Sierra Nevada, the high deserts of the Great Basin.  I have tried to “bloom where I’m planted” but sometimes seeds just go dormant until they get the right environment again to blossom and grow.  I am storing metaphorical seeds wherever I find them!

Wandering the art museum is my way of remembering more than who I am and what I am enduring or yearning for to be otherwise; reading and writing are just as important, but sometimes too subjective to give me that sense of true wandering.  How we keep hopeful optimism alive despite the awfulness we see in the world, on so many levels, in so many different places, is a necessity for maintaining some sanity and compassion, to not become embittered and closed off.  I am listening, again, for the music of the spheres.  I am searching to understand what the harmonic intervals of my life must be in order to create.  I am soon leaving a particular set of intervals, looking forward to new wandering up in Nebraska.

References: Quotes on “The Infinity Machine” taken from the brochure accompanying the installation; The Menil Collection and The Rothko Chapel can be introduced by these links: https://www.menil.org/

https://www.menil.org/campus/byzantine-fresco-chapel

http://www.rothkochapel.org/

“A woman with wind for her soles”

Almost three months have passed since I last posted here and during that interval I often debated with my inner voice about when and what to write.  I drafted some entries that spoke mostly about the medical journey I was on during that time, but I decided to not say anything, to be silent as I recovered. My motto has often been “when in doubt, do nothing” if the circumstances need more clarification or direction. Conversely, I am always dealing with doubt and know it to be a useful catalyst.  It seems, still, that the months between August-December 2015 contain a lot of blank spots for me.  Someday I will recover that time and write about it in my poetry, for I made recordings for notes since I could not read or write for several months due to side effects that disrupted my eyesight.  The other challenge has been to my memory and attention span, both of which were impacted by the high dose chemotherapy as well. I am much better, but still painfully aware of the cognitive changes that I hope are temporary.

There was a significant medical benchmark for me to reach, which I did earlier this month.  At 100 days post-ASCT I got the results and analysis of how effective the ASCT was and prognostics for moving forward.  The most succinct way to sum it all up is this:  The ASCT helped but it did not achieve the hoped-for complete remission.  Instead, I relapsed, in the technical sense, and restarted chemotherapy at the end of December.  My biggest hope was that there would be a long-term remission allowing me to take a break from all the drugs; maybe that can still occur with the newest regimen, which seems to be working and is not too onerous.

More importantly, I am determined that this new year will be about moving forward into new adventures and creative opportunities, with cancer only a small superscript at the bottom of the pages on which I write my life.  Last year was a marked year, overwhelmed by cancer treatment and the endless waiting that is so much a part of every cancer patient’s life.  You wait for diagnoses, results, doctor visits, and procedures that are often uncomfortable or painful but mandatory.  Staying present is more dependent on navigating fatigue and side effects than it is on being able to remain sanguine about the future, every moment framed by ongoing questions.  This year will be different and I want to believe that I will regain my sense of my self as “a woman with wind for her soul,” a soul that could have been crushed by all that has occurred.

The title for this post is a translation of a French phrase applied to a famous French-Belgian woman explorer, Alexandra David-Neel (1868-1969).  I haven’t found the source of the quote yet.  It came to me as a French inscription on a “used/vintage” wool Hermes scarf I purchased several years ago (2009 was the year of issue, so I don’t really consider it vintage).  The scarf depicts David-Neel on her 1924 journey to a Tibetan monastery in Lhasa, which was forbidden territory for outsiders.  The French phrase, La femme aux semelles de vent, spoke deeply to my wanderlust and made the scarf talismanic.  The first time I wore it was the graduation ceremony when I received my MFA from Mills in May, 2014.  I believed, then, that I was going to change the direction of my life to better support my creative work and career options;  I still want to believe that, although the health crisis intervened and pretty much forced me to put a lot of dreams on hold until now.

Not speaking French, I alter the phrase slightly to say that I am “a woman with wind for her soul” because I finally remembered something important that was temporarily missing from my life these last few years.  Last August, out in the high desert of Nevada, I lay in bed one night beneath an open window just so I could listen to the wind roaring down from the Ruby Mountains, feeling it rustle my then long hair and coolly brushing my skin.  It was an ecstatic moment for I had not felt the wind like this in years and I was able, at last, to reclaim a long-buried sense of who I am.  It is hard to remember who you are in a health crisis, be it cancer or something else.  Part of my healing, now, is to remember who I am, irrespective of a cancer that will be only a footnote to my life, not the main essay.

The nomadic spirit is restless and I am generating the strength and focus to seek new landscapes and mysteries, places and moments of being that will heal me more deeply and surely than all the pills and procedures.  I have endured and now must thrive. I carry this phrase with me, on a small folded piece of paper along with other talismans of stone, shell, a photo of my children, and a thin silk handkerchief from a dear friend.  I carry the wind in my soul until I find it in the landscapes I explore, hoping to soar on invisible wings, again.

Phantom Hair

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I am now 32 days past the stem cell transplant on 9/28.  After a three-week hospitalization, much of which I don’t remember very well, I am recovering and doing well. Parts of this process were very unpleasant and difficult but I am happy to have come through it all now and am in the critical 90-day time period when I am pretty much not allowed to go anywhere or be near other people who could make me ill.  So, a lot of time here at my sister’s house in Texas, resting.  One of the more unpleasant side effects of the terrible chemotherapy given to me as part of the transplant conditioning process (i.e., massive dose of very toxic chemotherapy to kill off as many cancer cells as possible before infusing my stem cells back into me that had been harvested a few weeks earlier) is that chemotherapy wrecks a lot of the healthy parts of your body, too, temporarily but no one knows when the effects will wear off or even what particular effects one might have.

I can’t taste much of anything and what I do taste isn’t so good, making eating a chore but something I must force myself to do in order to sustain my healthy recovery.  The good news is that my bone marrow is functioning at a normal level (more than less) now and I even have a new immune system growing, too.  Unfortunately, I have lost all immunities to every childhood disease and vaccination I’ve ever had and will remain very vulnerable to flu and other such things throughout the coming winter months.  My immune system will not be strong enough for me to receive new vaccinations until a year from now, so I have restrictions on travel, too, but bit by bit and with being careful, I will be okay.

The more frustrating side effect has been the effect on my brain, what is commonly referred to as “chemobrain.”  And, also an effect of the transfusions and drugs is that my eyesight is still not right nor is my hand-eye coordination.  Thus, I have been unable to read and write for most of the past month but am slowly forcing my eyes to read more each day now.  As for the other stuff, well, it’s all a matter of time and patience and remembering that these first 90 days will be a time of acute transformation and, hopefully, restoration by the end of the year.

One other effect of the chemo is hair loss and I did, indeed, finally start losing my hair about ten days after the transplant.  I had already cut off my long hair myself, about a month before the transplant, as it was beginning to shed from the other chemo I had been taking from May through August.  I wrote about cutting my own hair, part of it tongue in cheek, part of it in defiance and anger at what this entire experience of cancer treatment brings out in terms of control and submission, big issues for anyone with a serious illness that requires a lot of medical intervention and invasiveness if one chooses to go that route, which I did.  I still believe I did the best thing I can, for now, to extend my life and the time of being in a long-term remission for years to come. So, losing my hair was not a big deal.

As soon as my hair started falling out everywhere in the hospital bed, I requested that my head be shaved.  I’ve never had my head shaved and was startled that the final result looked like I had a skull covered with a five o’clock shadow of stubble that felt like rough sandpaper.  It was not pleasant to the touch, not the baby smooth scalp I imagined.  I had already given up on any semblance of vanity by this point since being sick in the hospital pretty much requires letting go of all inhibitions in order to get through some gnarly moments that would otherwise be humiliating.  My newly bald head was a novelty and I couldn’t help comparing my swollen, bloated self to Jabba the Hutt or any of a few other well-known baldies my family came up with (Mr. Magoo being my favorite).

Hair is so subjective and so integral to our self-image.  I miss the long hair I had finally grown out below my shoulders the past year but figure it can grow back, maybe.  They say that when the hair does begin to grow back it often is a different texture, maybe curly, and maybe a different color.  I’ve heard these changes aren’t usually permanent but I am game to see what’s next, what’s new. Surprisingly, I have had no desire to cover (i.e., “hide” or disguise) my head (except for warmth) when going out in public (rare but still necessary with careful precautions in place, like a paper mask).  Not even scarves.  I like wearing hats and do, again, for warmth, but otherwise feel a strangely liberated sense of being exposed that does not bother me.  It’s a kind of honest nakedness, almost, with no hiding, and I am surprised to have adapted to this vulnerability as well as I have thus far.

What I haven’t adapted to, though, is what I am referring to as “phantom hair”–a phenomenon similar to the more well-known one of phantom limbs or the sensation that many amputees have when still feeling their missing limbs are attached to them.  I had done some reading on this before as part of an inquiry into the complexity of what are called mirror neurons and my deep curiosity about perception and sensation.  Nowhere had I read (yet) of what I am calling phantom hair, but here is what it is for me.  I walk into the bathroom, prepare to take a shower and realize I don’t have shampoo or my regular “hair” towel with me. Then, I touch my head and realize that I don’t have any hair to wash. This happens every day.  I open the drawer where my hair brushes are kept and think it’s time to brush my hair, only to quickly realize that the hair I want to brush isn’t there, even if I “think” it is and almost always reach to touch to verify it isn’t, not to mention the quick shudder of imagining what my hairbrush might feel like on my barren scalp.

None of this is profound, just part of a process of healing and transformation that fascinates me now.  In the spirit of joy that I nurture throughout all these tough times, I played “make-over” with several of my sisters earlier this week and present here the photos of what was a most joyous embracing of my bald beauty.  It’s more than skin deep or superficial but being able to play at this point, even when I don’t feel so great, is also a sign of deeper healing.  I am so very grateful for the chance to experience all of this.

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Photos were taken on Monday, 9/26; bottom one was taken yesterday (9/29) and reflects how I’m feeling now: Good!

The Ring : Part 1

 Photo on 9-22-15 at 5.18 PM

The Ring is the palest shade of lavender possible, it seems.  Sometimes, depending on the light, it may be slightly more tinted with purple if the angle suits, or it may appear almost colorless, a crystalline emerald cut stone.  Sterling silver has been artfully carved into a setting with lots of open space that lets in more light and suspends the stone high above my finger’s skin.  Four silver prongs hold the stone in place, looking like small, very small fingers at each corner.  It is an ordinary ring, modest in its assertion that it is an amethyst.  I was told it came from Germany, was a type of German amethyst.  I don’t know the ring’s age; I was probably half the age I am now when I purchased it in a small vintage/antique store in Pacific Grove, CA.  It spoke to me.

Several years later, maybe another four or five, my stepmother was diagnosed with a cancer, etiology unknown.  By the time it was discovered, it was terminal. She had been my mother for almost 30 years by then, my birth mother deceased years before when I was 9.  My stepmother had been the unlucky one sent to tell me that my mother had died, a moment that tore both of our hearts apart.  But, I grew to love her and believed in her, followed her and called her “Mother” and would not deny her as my mother.  I had two mothers, was all–one dead and one alive.  Allmost 30 years later, she learned her own life would soon end, too.

Twenty-six years ago we sat outside in the hot August sun, talking about a trip she would take to see Paris, in the early fall.  I believed that looking forward to the trip would keep her alive longer, give her something to hope for now that the doctors told her there was no hope.  Her children, all of us, were stunned and afraid, feeling helpless and sad, wanting to do something, anything, to make a difference in her days. The sunlight caught the pale stone on my finger, made it shine like a diamond, and she admired the ring.  Impulsively, I removed it from my right hand and asked her to let me put it on one of her fingers.  My hands were larger, but we made it fit.  I told her that I wanted her to wear it, to keep it, and she protested that she couldn’t keep it.  So, I bargained with her:  “Wear the ring until you get back from Paris, keeping me close to you in spirit and stone for I have never been to Paris and wished I could go, too.”

Five months later, just before Christmas, she was gone.  It was a hard dying and I don’t remember who said what to whom or who asked, but somehow I think I decided the ring should stay with my youngest sister, my mother’s youngest daughter and the one who had lived with her and been there for all of those difficult, terrible months.  My mother had few valuables but we all knew that she liked this ring, an aquamarine ring (her birthstone), and an older gold and onyx ring set with a tiny chip of diamoned, a ring that “disappeared.”  I missed the amethyst ring but had others, too, and felt that giving it to my sister was the right thing to do; it was the only small talisman of comfort I could leave with her when I returned home, far away from her.

Years later, given that we sisters are prone to sharing jewelry, the ring went to my next youngest sister.  Again, I don’t remember the circumstances and surmise it was something between my two youngest sisters, one of those spontaneous moments two of us would have when going through jewelry together and calling out what was most liked or even coveted.  There was almost always an exchange, almost always something considered “on loan” for an indefinite time. Events and circumstances would determine the “right” time to give back an item.

And so it occurred a few weeks ago, another moment when the ring was exchanged again, the wearer being the one who suddenly knew it was the “right” time to pass on the ring.  I was visiting with my two youngest sisters and the youngest had just given our other sister a ring, whereupon the sister with custody of the amethyst ring for some years told me to put out my hand. She slipped the amethyst ring onto my finger and told me she felt it was time for it to come back to me. I have endeavored to wear it every day since, except when medical procedures interfered and I know I will not be able to wear it for awhile when I am in the hospital in coming weeks.

There are two parts to this post, one personal, very subjective, and tied specifically to the history written into this post (Part 1). That history is not finished and I imagine the ring will pass to someone again, maybe my daughter or another sister at the “right” time so long as it’s understood it is a ring that no one can permanently claim without breaking the cycle of love and healing we agree to believe is part of this ring’s gift in our lives.  Who knows where it might go or if it is lost somewhere along the way?  The point is to not break the cycle through willful acquisition or possession intended to inhibit or end the sharing.

In a sense, my sisters and I have set into motion an exchange that generates energy, invisible and potent, that somehow deepened our bonds.  We have created a type of family legacy tied to our generation, of which we have had few tangible “anythings”  to share by way of verifiable history or possessions “saved” and passed down between generations, let alone siblings. We have created a circle of love and healing in our own time and I know how deeply connected we are through this gift I now wear.

More timely here is the reason for the “right” time, which is the cancer living within me.  It affects us all in various ways, but I am the one about to enter the hospital in a few days and be alone even with so many around me.  And while I suspect some of you might shudder at my gallows humor here, I must say that I kinda feel like I am approaching the gallows (albeit voluntarily) but the expectation is that I will be rescued from the procedure that kills my bone marrow and, hopefully, as much cancer as possible for as long as possible. (And yes, the doctors do call this a “salvage” or “rescue” procedure that starts on the day I receive back my healthier stem cells aka  Day Zero and counting.)

In Part 2, I will expand upon more secular concerns that are essential to how I envision my life. I only have the energy and barely enough mental focus now to get through the next few days, but hope you will want to read more when I am ready and able to write more. In the meantime, there may be shorter posts as I continue along this “detour” in my life’s path.

 

 

Still Scary … and Sacred

It’s been too long since I wrote anything here.  So many ideas for posts but there was too much happening to me in terms of medical treatments and fluctuating physical/emotional ups and downs that I let this languish.  But, tonight, I want to try again to say something that is hard for me to say as well as some other things that are so much bigger than me and my “scary” stuff, and so much more life affirming and wonderful to carry as a light through darkness.

There’s not much I can articulate about the scary stuff as it has to do with deep, primal feelings about facing the unknowns accompanying each step of the past month. There have been painful procedures, invasive procedures, and exhausting mental efforts to absorb so much important information that must be understood NOW even though it ends up being absorbed slowly because the human mind gets overwhelmed.  There has been the difficult conversation with adult children about a Living Will and Power of Attorney–probably unneeded but important pro forma matters to have on file at times like this–but also hard to talk about for what cannot be said, too.  For mortality is always present and must not be viewed through rose-colored glasses if one doesn’t want to be blindsided and miss the rest of life.  Then, there is the waiting for the next inevitable procedure and trying to keep positive and have a stiff upper lip even when what’s going on inside is much less calm and steady.  Especially in the dark nights of insomnia or those days when I wish I was not in my body, truly.

Still, I am trying to keep writing, find a way to remain grounded, and just work around the difficult times when I cannot write as much.  There are so many other scary things going on in the lives of people I know and those I don’t, such as a dear friend who has suffered much in life and recently escaped the raging fire in Middletown CA that burned his house down, leaving him with nothing, along with several thousand others displaced by this fire. My hope is that he finds goodness greater than grief in this experience of sharing loss and fear in the stories that everyone will be telling at the evacuation center they all must call home indefinitely; that he will experience what happens when many strangers come forward to help others in a time like this, providing shelter, food, clothing and whatever unasked-for-help is necessary.  That a community of strangers will possibly make new connections and overcome their fears and rejection of the “other” among them, always.

And while I cannot save the world or bear it all upon my shoulders, my heart still feels the interconnected struggles for life that many have now in countries farther away, deep in urban jungles or real jungles, alone on refugee boats that may or may not reach shore, crossing deserts or dying in them of starvation, lack of water, and too much war; and, in places where they are not welcomed but must insist upon entry for survival.  It is all connected, these efforts we make to go through various levels of pain, fear, displacement, loneliness, and unbearable uncertainty that requires enough spirit and will to be faced with a certainty of our faith in our lives and our common ground as human beings.  Whoever we are and where ever we may be, the sacred power of empathy is what connects us across all cultures and countries, and will somehow help us survive when we know we are in between our past and our future, trying to be present, to pay attention to NOW, whatever is going on, good and not so good.  That empathy must extend to oneself especially when it is hard to accept so much help and light from strangers as well as friends, because it is what will heal and somehow, hopefully, support the effort to stay alive in all ways, at all times.