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.

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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

IMG_5450

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.

Finding the Sacred in Scared

I’ve been thinking for months about the words, “scared, scarred, sacred.”  Simple wordplay at first, transposition of one letter and then repeating another.  I am in a place where I sometimes feel scared.  Added in is the mysterious affliction of a skin disorder that seems exacerbated by this blood cancer, has left me scarred on the outside and inside, physically marked and psychologically wounded by the distress of visibly disfiguring lesions that have been a torment resonant with the Biblical story of Job, so much so that I call it my “Job’s Affliction.” I don’t know what Lucifer and God bargained for in choosing my body to be the battleground testing faith on so many secular and spiritual levels.

Yet, my lifelong quest as a wanderer has always been aligned with transforming fear and loss, humiliation and shame, into sacred wisdom, approximations of grace received from many sources overpowering the darkness that would drag me down permanently, if it could; I don’t let it win out, no matter how tired and disheartened I become.  But, I have been brought to my knees too many times to count and these battles of wrestling with unseen forces (Jacob and the Angel, God and Satan, a lifetime of depression fueled by insidious grief, or cancer hidden in the matrix of my bone marrow, my lifeblood) erode me, too.

These are the times when I must find the sacred in scared, seek out balm for my scars and renew my faith in a life that is never guaranteed but squandered if we let it go without waking up and staying awake whenever we’re beaten down.  Thus, the new photo posted in my header above is from a very recent but brief trip to the Nevada high desert in Lamoille, at the base of the Ruby Mountain Range in northeastern Nevada.  While contemplating cutting my hair (see prior post) and scattering it in the desert winds I decided to first take a photo for a memento of that long hair I may never have again but cherish now.  The photo was a surprise, capturing the strength and joy I felt in my beloved open spaces of dazzling sunlight, wind, sagebrush-scented breezes, the dry touch of something like grace in the sacred moment of being present, alive, and restored to my true self.

Cancer is a word that scares most people, at least when it comes too close in the body of someone we know, moreso when that someone is oneself. It’s also a word that is used mostly as a negative metaphor, e.g., referring to racism as a cancer in the body politic of civil society.  Neither racism nor cancer are metaphors but they have a lot in common, particularly the destruction of lives. My subject here is not an essay on racism and cancer beyond what I say above to show how closely related they are in the body, be it an individual body or the collective bodies of the communities we inhabit.  Because if we are driven by fear, as racism and cancer so often are, we close down, become intractable and the less open we are, the more harm we allow to others and ourselves.

Vulnerability accompanies compassion, true compassion for ourselves and others, but vulnerability is sometimes beyond our reach unless we are committed to doing the hard work it demands of consciousness and persistence in the face of daily defeats we may never be able to banish in individual lifetimes.  We “think” we run out of time, but we have enough time no matter what we choose to do and must choose to do as conscious beings with the capacity to behave as if our lives depended on each other, all of us together or none of us at all, even those among us who prefer to be solitary; it all works out if we can envision and restore balance wherever or whenever we are called.  Cancer has called me now, a detour I am impatient to end but one I must understand for the lessons it has to offer, so I’m paying attention but my world is smaller, too, and lonelier now because no one else can walk this trail with me through fire and destruction first.

I am about to become the most vulnerable I have ever been, destroying my bone marrow and immune system in order to “salvage” it and live.  I have lived in places, cities and neighborhoods, that scared me because of the racial tensions caused by many forces beyond my control, disparities of the heart and spirit, economic blight, violence and crime, hatred and poverty without any hope of redemption or “cure.”  I have lived through being forced to walk alone and scared on dark streets, in my house, on public transportation.  I have been attacked and survived.  I have been scared by my own doing when taking chances or losing control, by my episodes of frightening depressions and inner pain so great it blotted out all the light.  I have learned, somehow, that we must retain vulnerability while protecting ourselves, another paradox.  I have learned to search for the light buried in the darkness always.  There is light buried in my bone marrow, even in this cancer.

I am most interested here in how we find  the sacred in scared. In our world there is too much that scares, too much that will not be cured, too much that maims or murders our spirits, dreams, and lives, whether we have cancer or something else eating away at us from the outside in, the inside out.  I have no doubt that unrelenting years of hard losses, grief, and unmanaged psychological stress contributed to the breakdown of my immune system. This does not mean I believe I “caused” this cancer; no one knows what causes it and it could just as likely be a genetic weakness in cellular physiology that is my own Achille’s Heel.  What is of small interest to me is that one of the cellular genetic analyses of my bone marrow samples for myeloma includes what is called a “translocation” of chromosomal material, i.e., something is missing or not in the right place.  So fitting that I then choose to “translocate” or relocate the letter “c” in scared to create “sacred.”  I like this correspondence.

Even more, I choose to find the sacred in this challenging obstacle course I now face, although cancer and its treatment are also dances between the sacred and the profane every day.  The things that must be done to one’s body, the invasive procedures and introduction of toxic chemicals meant to help heal while they also hurt, is a paradox sometimes too overwhelming or frustrating to accept.  On those days, I must lie down and wait it out, knowing all is temporary but necessary to extend my life and prevent irreversible organ damage with an entirely new set of miseries.

I am not scared about dying; that is less likely with this particular type of cancer that I have (and I do mean my unique form, as myeloma seems unique to everyone).  Infection and kidney failure are the likely end games down the road someday, maybe, if something else more mundane doesn’t take me first.  Instead, I am bargaining for more time and less toxic chemotherapy for the rest of my life.  I am bargaining for freedom to keep wandering in remote places and not be a victim of cancer or the horrendously, obscenely expensive regimens I face for the rest of my life.  If I so choose;  I do and always will choose my own way forward, up, down, or through.

Words are powerful. Words are also confusing, harmful, meaningless, and necessary for communication among people who are literate and attached to the meanings they give to words, or the words they use to try to give meaning to feelings, experiences. We can more readily name what scares us before we can even consider what we believe is beyond or even beneath what scares  us.  The sacred can scare but it’s ineffable and often expands rather than contracts;  maybe it’s the opposite of fear because of its relationship to the unknown, the other possibility for interpreting and responding to or participating with the unknown?

Without adequate words one only approaches but does not necessarily contain or restrain the unknown sacred, maybe even merges with it, if receptive, but it is beyond language and words. That is why I find the sacred out in a beloved, wordless landscape; I try to find snippets of it in whatever landscape I inhabit but confess that the Great Basin high desert is what draws me strongest. Texas is too hot and humid, still too unfamiliar.  The pull of the Arctic Desert of Baffin Island, Nunavut felt almost as strong as the Great Basin, a function of light, remoteness, clear air and something wild and raw dwarfing the always insignificant human figure. A writer is always wrestling with words; I am engaged in a futile exercise to give words to so much that is ineffable, but I am compelled to try to;  that is why maybe all poems and writing are failures as finite creations but they evoke the sacred, the scared, and the scarred in our lives; maybe evocation is praise enough.

As the weeks draw closer to the end of this “induction stage” of treatment with what has finally been an effective chemotherapeutic agent, I now face the scariest part of preparing for the upcoming autologous stem cell transplant in the latter part of September. Beginning at the end of this month, I undergo my third bone marrow biopsy since November, 2013 and February, 2015, that piercing of my bone that drills out a core sample of bone marrow. It is reminiscent of core sample drilling into the earth, but the earth here is mine, my solitary fleshy landform, for are we not made from mud, clay, water, minerals, earth elements, and star-dust?

Then there will be injections to stimulate the growth of stem cells that will likely overcrowd the fixed space of my bone marrow confined by rigid bony walls and cause some pain until released in the “harvest” that takes place days later, the filtering of my entire blood system through tubes and a machine attached to me, filtering out plasma to retrieve and freeze  stem cells that will then return to me another week later.  But, first there will be another invasive procedure, the surgical placement of a second device in my chest, already scarred and lumpy with a smaller internal port that spares me numerous needle sticks and blown veins.  It is another scar and this next one will be larger for a device that will feed a tube into my aorta, close to my heart, and leave three external tubes/ports for all the blood drawing, transfusions, antibiotics, fluids — everything that will keep me alive while wiping out my immune system and bone marrow to then “regrow” a new immune system with a fighting chance at defending itself against myeloma cells for a few years on its own, with maintenance drug therapy but not the intense six months of what I am now completing in this stage, I hope.

There are no guarantees, only a gamble at this junction of disease and healing, and gambling scares me.  I find it ironic that I grew up in a gambling state, Nevada, but never developed a desire to gamble as entertainment or obsession.  I gamble, instead, with my life now.  (The low mortality rate of this procedure is encouraging, but there are no guarantees.)

So, as I fortify myself and try to prepare myself in practical ways for what may be a few months of radical physical changes and moments of serious risk, unintended consequences, and transient misery or illness, I will take this high desert heart and windblown sun burnished image of myself through the scary moments, infusing them with grace, believing I will find the sacred more powerful than the scares and the scars.  My hair will fall out; someday I will carry it back to my sacred landscapes and cast it into wind and sagebrush, hoping some bird or small animal will use it to create a nest and nurture new life.  I am nurturing new life by not seeing this cancer as an enemy to be attacked with images and metaphors of war.  That is too common but does not fit with my way of being. This cancer has been a process out of control until now, but a teacher, too.  These treatments and various indignities of dependence and constant scrutiny are processes, too,  processes leading to an intended result that may or may not turn out as hoped.

But, I am a wanderer of the mind and choose to accept soul-making experiences over all others, learning every step of the way, so this cancer is not my worst enemy; it is an unwanted guest that I somehow must make peace with by opening up to receive as much grace and light of healing as possible to overcome the darkness that only has come to make me pay attention and live my life, really live my life the way I must before I have no life to live, as we all must do, however and, less optimistically, if, we learn that. There are no guarantees and many lives appear unfinished, incomplete but we cannot judge.  I was complete in the moment of this photo, cancer still living it up in my bone marrow, but I was paying attention to something far more important than cancer.  I intend to keep doing that, too, however and whenever I can manage it.

Cancer gets its due now and someday it will be a footnote, a subscript, a sleeping serpent hibernating in my bones perhaps, but not the sum of my being.  I’m okay no matter what happens next.  It’s all what we make of it when it becomes ours and this cancer is, for the moment, mine. My intention is to listen and then move on to something else more interesting and life-affirming, always!

How To Cut Your Own Hair

Photo on 7-27-15 at 9.52 PM

As I move closer to undergoing the stem cell transplant in September, the almost certain loss of all my hair has made me ponder how I feel about such a transformation to baldness. My hair reaches well below my shoulders now. For the past few years, since my diagnosis and especially since beginning treatment in February, I have known this may be the last time I ever have long hair. There are people who advise me to get it cut now so that I am not as distressed when it falls out.  There are others who advise leaving it alone; maybe I am the extremely rare human whose hair resists the intensive chemotherapy that will wreak havoc on every fast dividing cell in my body, not just the tumor cells. And, the voice of denial in my head keeps saying I’ll be okay with losing my hair because I am not so vain as to consider it a crisis. All those options to turn into Plan A, Plan B, Plan C (as in C for chemotherapy).

So, I researched to find the best hair stylist in Dallas for a super haircut so that I might ease into shorter hair between now and September, when the hair goes.  I found a place and have them as a “Plan A” option.  However, as I tried to rationalize the cost (why bother spending any money when the haircut will be short-lived) I suddenly realized that I have always believed I cannot or should not cut my own hair precisely because of my vanity about my hair and self-image.  It dawned on me that now is the time when I can and should cut my own hair, if I choose.  I researched haircutting videos on the internet and concluded this is a reasonable, maybe even necessary and liberating option, under my current conditions (I will call this “Plan C” as Plan B” is to do nothing except keep putting my hair up on top of my head until …).

When I wrote about this, not intending to make it a public post, I came up with the following piece that really speaks more to what else is going on beneath my head of hair.  I may or may not cut any of my hair, which is not the point.  Saying some of what is below is far more important to me and seemed to take the lid off of other ideas and feelings with which I wrestle.  So, the prose below has sat on my desk a week while I debated posting it here.  It’s only the beginning of my descent into extreme vulnerability, be it a bald head or the scary destruction of my immune system.  (Note that I use the “second person,” you or your, because I am not speaking only for or about myself in much of what follows.  I am speaking to you and of you, to and for our commonality.)

How to Cut Your Own Hair

First, give up vanity, your dependence on opinions of others about your style, how it might be shaped or tailored to reflect their vision, not yours. If you are a writer, consider your receptivity to editorial intervention, another’s vision superimposed upon your own, and weigh the worth of giving up your own authority.

Second, invest in very sharp scissors, a pair of long blades, and short ones, too, long metal clips to hold back what you’re not yet ready to cut, a mirror that distorts self-reflection, ignores reality. Although you want to see what you are doing, do not stab your eyes while chipping into those blunt cut ends hiding your face.

Third, swallow your pride if you want to succeed, your effort no better nor worse than anyone else’s; this isn’t what you’d do if you had other options, more money or time, more fearlessness about present and future unknowns, consequences. When it’s done, probably less perfect than imagined, remember everything will regrow, be it hair that sprouts on your bald head, or, rogue cells sabotaging a second chance.

Fourth, take photos before and after, selfies of a self in media res caught between transformation by your own hands, an act of defiance directed toward those other hands piercing chest walls, hip bones, arms, veins, and, if you’re not careful, your belief in yourself. More than anyone else, you must trust yourself, your will to pull through the eye of a scary needle that offers some kind of hope when no cure exists.

 Fifth, be mindful. Contemplate the absurdity and seriousness of your condition, prepare to ignore abstracts and cling to your body, for it has substance you can grasp when you cut your own hair, offers an illusion of control when staring down what you cannot control. Chemicals will destroy your immune system, a wildfire blasting everything to nothing so it can grow back whole, a controlled burn for which your hair will be insignificant kindling.

Finally, if/when you cut your own hair, keep your eyes open—most of what is about to occur is out of your control, shorn hair an irrelevant necessity to reclaiming who you are/are not. You will look like someone you’ve never seen: Yourself.

The second person voice (i.e., “you”) used above wants to be universal, but everything I’ve written is quite “first person” personal, too. I am not my hair or even my image in your/my/their eyes, or in the mirror. I am the physical reality of a woman who will allow cancer to take only what can be reborn again—blood cells, bone marrow, skin, hair—but not my life.

 

Soft Eyes, Hard Truths

This morning, as I cleaned my eyeglasses, I wondered about the myriad drug effects that attend my cancer, many of which are unknown, “possible” but not always “probable,” “usual,” “common,” “less common,” and “rare.” (Those words are set off with “” because that’s how they most often appear in lists of drug or procedure side effects.)  In short, so much of what might happen versus what will happen, comes down to “seeing the forest” versus “seeing the trees.”  Sitting here at my computer, I fail to find any clarity of vision with my prescription glasses.  A few months ago my vision changed.  I couldn’t read the huge green signs on the freeway until I was almost  on top of them, despite their large white letters, yet distance had always been my strongest vision, unimpaired even by aging.  Up close, where I do need glasses to read, now it’s a constant effort to find the “right distance” to bring words and sentences into focus.  This is all very frustrating.

This morning, as I resigned myself to yet another side effect of indeterminate duration or reversibility once I get through all the drug treatments (if ever), I considered my options.  I have been told to either get my eyes rechecked (despite the brand new, expensive progressive lens that I got less than two years ago that now must sit on the end of my nose just so I can read, unable to bring anything more than eight inches away into focus) and make do with a temporary set of glasses, assuming any balance can be achieved between near and far vision; or, be patient, wait it out (there’s it again: see last post for comments on it), and just live with it because it will eventually get better. I love to read and I spend a great deal of time at the keyboard and screen as well.  One hard truth is that I am now reading less because it’s so frustrating and fatigues my eyes.  As for writing, my once graceful, rhythmic handwriting has become more of a scraggly scrawl.

This morning, as I tried to bring things into focus, the term “soft eyes” came to mind, and I recalled that series of books from when my children were young, Where’s Waldo, as well as those optical illusion images that require the viewer to soften and blur their eyesight in order to bring a “hidden” animal/object/face, etc.,  into view.  I also recalled a friend’s admonition to soften my vision, figuratively, when looking at a complex situation so that I could somehow bring hidden elements more into focus without the distractions of the obvious ones for a much “bigger picture.”  And, there is also the instruction to soften one’s vision in meditation, to not close the eyes completely but to somehow maintain a soft focus that prevents falling asleep or mind wandering but also minimizes distractions of light, movement, and objects so that one remains focused on the breath, the pinpoint of mind. Just to be sure, I also looked up the term, “soft eyes,” and found a succinct definition from the online Urban Dictionary: The ability to see the whole thing. If you have hard eyes, you’re just staring at the tree and missing the forest. Seems I’m on a new path as I reconsider my options.

This morning, when it is now so difficult to ever achieve the sharp focus I want in front of my eyes and inside my brain, I begin to realize that the bigger picture here is still about my life and its potential for many levels of focus.  Cancer is a tree in the forest of my body. Nothing could be more tree-like than our circulatory system and a cancer rooted in blood cells will circulate throughout the body, proliferating from the closest thing to earth/dirt in my body, the mineralized loam of my bone marrow.  I see the cancer more in terms of its vast network of roots, less as a fully formed tree with a trunk and branches, and maybe it’s better that it not become so sturdy and mature.  When I say this cancer is throughout my body it is most definitely not a metastatic cancer at this point, but rather one that still touches every measurable surface that blood and lymph touch in their circulatory routes. Thus, there is a dark element contained within the ironic label of too many free light chains, which are the “tumor burden” being vanquished as much as possible through chemotherapy and autologous stem cell transplant.  Those light chains do not carry light yet I believe all our bodies are bodies of light, densely compressed energy.

This morning, I repeat myself because each morning is a new moment in which I come face to face with hard truths on so many levels.  There is the cancer, a hard truth.  There are the cancer treatments, all hard truths albeit unpredictable ones that sometimes lie. If I focus only on the tree that is cancer, I will certainly miss so much beauty in the forest.  Suddenly, as if to affirm me, an old memory shines forth of a brief walk in a forest high above Santa Fe, NM on Tesuque Mountain.  I found myself in a forest of what I thought might be alders or birches (I’m better with bird than tree identification), a myriad optical illusion of shafts of light interwoven between shadows formed by density, shimmering reflections off dancing leaves, and stark ivory bark.  I understood, in that moment, just what it means to not be able to see the forest for the trees.  Then, I looked around at ground level and discovered carpets of small wildflowers–reds, blues, yellows, whites, green leaves and grasses. It was enchanted; I felt exquisite joy and gratitude.  It was a moment of perfection that I can recall in my mind’s eye with perfect clarity and focus; this solace does not require prescription glasses, remains impervious to side effects or cancer travails.  I have this clear vision available at all times.

This morning, I renew my efforts to focus on the forest of my life now, accepting that soft eyes may be just what is needed for clarity as I learn to live with blurred vision sometimes and all the negatives of cancer I am trying to transform, eventually, into a positive outcome.  For there is also a world of hard truth beyond my immediate crisis, and that world is one we all know and live in at various levels of insight or ignorance.  For now, impatient as I feel, I must take care of myself in order that I might once again take up the work I still feel is mine to do in this lifetime. Just as this cancer may be likened to a tree in the forest of my body, my body is just a tree in the vast forest of humanity, where I still believe I have much to offer as a writer, once I can see beyond the shadows of my small forest.  (A poet with cancer has many options for making metaphors!)

 

Stiff Upper Lips Wilt

Sometimes, stiff upper lips wilt, droop, fall, falter.  It’s the way tulips stand up tall, brilliant flowers on dark green stems that open to sunlight’s beckoning, singing a chorus of colors. Then, when those vibrant petals have opened to pull us into them as far as possible, they do not close up or quickly disappear.  Their colors fade and each bloom droops in a gentle gesture toward finality.  We learn when we accept all cycles of life.  I am trying to remember that cycles of beginning and ending repeat, that nothing stays the same, that what seems unbearable soon loses its sharpness and the dull ache of resignation fades.  The heaviest weight either overpowers us so that we must lighten the load or we eventually adapt and shoulder it with less resistance, building endurance.

This cancer pushes me in directions I do not want to go, leads me down trails that seem never to end; one steep climb up reveals another peak to reach after descending and climbing again, terrain unfamiliar and uncertain as to whether it will ever level out or at least provide a wide meadow’s respite.  Remission is another way of talking about respite. There are small resting places to gather strength, a second wind, but the absence of the need to keep climbing up, when and where is that place reached?  Is absence even  a “place”?

When I was first diagnosed with this cancer, I had great optimism that it would be a number of years before I’d need treatment, if ever.  There were numbers to measure with frequent, regular blood tests, percentages to watch as they shifted up or down, and a new element of uncertainty added to my lifeline.  There was the realization that my life would never be the same, that I had an incurable disease but not a death sentence; there was a sudden sense of “then” as permanently irretrievable by “now.”  A new specter of vigilance invaded my consciousness as I grappled to integrate, if possible, the knowledge that my blood marrow was being overtaken, slowly, by impostor cells.  I couldn’t dwell on asking “Why?” when no one really knows why this cancer occurs; they can only speculate and speculation is irrelevant once it is your own fact.  And, it is my “own” fact, but denial protects us even when we are smart and unafraid to look at the “facts” as we imagine them for this cancer has so many unknowns that it becomes a lot of imagined scenarios.

Multiple myeloma is a hydra, a many-headed beast; it is a chimera, too.  It shows up differently in each person, it seems, and treatment options are constantly in flux as responses to treatments are unpredictable.  Somehow, I failed to understand that at the beginning of this unwanted assault on my body.  I only focused on the fact that I was healthier than most at the time of diagnosis, that I was lucky to have found it early enough to watch it and thus prevent, or at least delay, it from becoming worse in the all the ways it can worsen.  “Watchful waiting” is the term the medical people use to describe the stage I was at when they discovered it; it was “smoldering” and not causing symptoms but needed to be monitored closely.  Watchful waiting was code for “maybe” or “when” or “if” it needs treatment.  Watchful waiting was frequent blood tests and more numbers to watch, numbers that would signal activated progression and symptoms.

I did enough research to learn what I needed to know and discouraged family and friends from getting caught up in survival statistics or the word, “incurable.”  Incurable doesn’t mean death; it means there is almost no chance of cure and the addition of an unwelcome passenger to the rest of my life’s journey.  The goal was to remain as healthy as possible and maybe outrun the odds, maybe even be cured despite the odds.  I was in graduate school at the time of diagnosis and all I wanted to focus on was whether I could finish my thesis and last year of studies.  It was hard, very hard, given that I had not been feeling well for a long time already, but I shouldered my pack and trudged on to the end of that particular path, getting my MFA, although a year later I feel everything has remained on hold, including my writing.

After a year of “watchful waiting,” I began to let down my guard and imagine that maybe this condition would not progress.  Cancer was not the word I used to describe my condition, even though it was considered malignant.  “Limbo” was the word in my foreground.  I needed a job and a new place to live but was uncertain enough about my future to realize that new boundaries had to be drawn around what I envisioned for myself. Those boundaries include having close friends or family nearby and access to a specialist and treatment as well as medical insurance.  For all those reasons, I found myself leaving California, thinking it was only temporary until I could redefine new boundaries and conditions for getting on with living my life in all its dimensions.  I’ve adopted a stiff upper lip many times and this time was no different.  Once I figured out what I was dealing with, I would proceed.

Except I came to learn that figuring out what I’m dealing with is not straightforward nor is it even obvious at times.  Earlier this year, when my status changed quickly from “watchful waiting” to requiring treatment, I crossed over yet another line I didn’t see in my immediate path.  I was ready to leave Texas and finally letting go of the breath I’d been holding ever since that first referral for a bone marrow biopsy in November 2013 and the subsequent meeting with the specialist to give me a diagnosis.  I held my breath for the next 13 months and just as I let it out, a new fact filled that space somewhere in my solar plexus: another bone marrow biopsy was ordered and then a new diagnosis and new restrictions on my immediate future.  I wrote about some of this, briefly, in February of this year, when I began treatment with a kind of wonder drug I truly believed would work. Because I did not believe I really had cancer, even then. Yes I had “multiple myeloma” but it still seemed more benign to me for having been dormant so long and I mistook this new course of treatment as a kind of fast track to remission.  It was only a matter of time and I would soon be leaving Texas to get on with the rest of my life and the disease would be controlled.

But, cancer is a many-headed beast, a hydra and a chimera.  The wonder drug didn’t work at all and when that news came down, after several months of treatment and an unpleasant series of side effects, I was temporarily in shock and disbelief.  Then is when I realized the degree of denial that was operating behind all that optimism shielding me from this one fact:  I have cancer and I did not really want to say I have cancer.  I went into a dark place of reckoning with reality in a new way.  Fear was present; how could I not feel some fear about something I was treating as more benign and fully expected to be easily overcome by the wonder drug?  Why didn’t it work and what did that mean for future treatment options?  Was this cancer stronger than I realized or had it already changed into something else more resistant?  “What if” is another set of words to steer around and not spend too much time with on this path.

There was another month of being treated only with a high dose steroid called dexamethasone. During that time, most of the month of April, I felt like my entire nervous system was on speed (even though I never “did drugs,” it felt like I was wired 24/7 and sparks were flying closer and closer toward igniting an implosion/explosion). I couldn’t sleep, couldn’t stay focused, talked too fast, my mind raced night and day, and then my body began to tremble and my balance faltered.  It was the pits, hypomanic but getting more manic by the day it seemed, and once the detrimental effects were tallied, steroids became another treatment option to avoid or use sparingly.  Which lead to the third one now underway as well as a sober reckoning with what is to come.

The current chemotherapy regimen has proven effective and I am completing the second cycle of what may be three or four cycles in preparation for a stem cell transplant at the end of this summer.  Cancer is expensive and this drug is terrifically expensive:  $10,000 per week for two IV infusions over the course of three weeks=$30,000/month.  I get 10-12 days of rest/respite from the effects of the drug and then we start another cycle.  My veins were troublesome for all the needle sticks I endure, leading to the implanting of a port-a-cath last week in my upper left chest.  Yet another type of catheter will be surgically implanted (as was this last one) when I get ready for the stem cell transplant process to proceed.  If I did not want to “feel” like a cancer patient before, I do now as I slowly join the others in the chemotherapy room, most with bandages over telltale ports in their chests. There will be scars inside and out, but I am reminded of a book title from many, many years ago that I somehow recall now as stating scars make your body more beautiful.

Up to a few months ago I chose to not identify with other cancer patients.  There was (and is still) a hierarchy (false) in my mind of how there are people with worse cancers who are sicker than me and, therefore, I feel like I don’t deserve to be among them or to speak of what is bothering me about my cancer.  I am still grappling with that and it’s another subject, but the resistance is real and quite common.  When I met with the transplant doctor, an oncologist at a hospital in Dallas where all this will take place, I still had to ask if he really thought the stem cell transplant was necessary!  I wanted to avoid it somehow but, I also want to avoid the irreparable consequences of the type of myeloma that I have, which causes kidney damage and failure without treatment to try to achieve remissions.

I have been sitting with my “new normal” reality for the better part of these past few months, letting my awareness that much of what is associated with cancer is inescapably unpleasant and an overwhelming burden at times needs a counterbalance.  My stiff upper lip faltered and fell in the last month.  Maybe I’m tired and it’s the cancer speaking now.  What can I say or write  here except how it feels to have my cancer?  And does it help anyone else to read this? It’s not the day-to-day tedium of it all (and it is tedious when every week involves doctor or clinic visits and “down” time due to transient side effects and feeling unwell momentarily).  I am tired physically, emotionally, and mentally but trying to rally for the next climb.  The next climb will include more diagnostic tests and another bone marrow biopsy (these are definitely not pleasant).  The next valley, I guess is the limbo of whether I have one or two more cycles of chemotherapy before we proceed to the stem cell transplant. There are preparatory actions, some very unpleasant.  Yet, all the time, I can only go through this challenge by keeping a stiff upper lip and trying to not hold my breath (except when told). How long do I remain off the trail, so to speak, gathering the will and fortitude to keep climbing when I really want to run away and forget it all?  I yearn for new scenery, a new landscape to explore.

An autologous stem cell transplant, for those of you who may not know, is one in which the stem cells from my bone marrow are “harvested” and ultimately transfused back into my blood in hopes they will grow new and stronger blood cells leading to a stronger immune system within my bone marrow. http://www.nlm.nih.gov/medlineplus/ency/article/003009.htm

Between the time of “harvesting” and “transplanting” there is a massively intense dose of bone marrow destroying chemotherapy administered.  This chemotherapy (related to mustard gas)  kills off the cancer cells as well as the healthy bone marrow cells and one becomes temporarily vulnerable to serious infections until the immune system recovers; let me ponder, another time, what it truly means to be so dangerously vulnerable.  Recovery takes time and during the first few weeks of all this process I will be in the hospital.  Once I am well enough to go home, there will still be another three months of intense observation and intervention when necessary.  I will not be allowed to be in crowds, go to restaurants, or travel.  Since the chemotherapy wipes out every immunity I’ve gained from childhood vaccinations and illnesses, I will also be extremely vulnerable to childhood and adult illnesses until such time as my immune system is strong enough for me to get all those vaccinations again!

I can only imagine, now, how the next six months of my life will proceed and while I believe there is a light at the end of this tunnel, at the moment I am very tired of being in the tunnel.  My hair will fall out and that’s certainly something new to look forward to, with a sense of humor (I hope). The goal of all this, though, is to induce a remission that is a long term result of all these treatments.  Myeloma always recurs and the only question will be when and in what form.  There will always be some treatment via chemotherapy, to beat it down, I hope; there are always clinical trials and maybe there will be a better form of immunotherapy in my lifetime, which makes sense.  At the moment, though, I am trying to raise my spirits, and bolster my stamina for the long trek through this hot Texas summer of waiting, waiting, waiting until I am more free to bloom in a new life I create with all the resilience and energy I can reclaim once this phase of treatments is accomplished.

Stiff upper lips are only a mask, you know.  Behind the mask is an imperfect human in constant flux. I am engaged with this cancer, learning how to live with it by accepting it is a part of me, albeit not the best part.  I cannot reject it outright when it is in my blood and everywhere in my body, sometimes undermining my psyche.  There is a dialogue each of us must have with our illnesses, if possible, whatever those illnesses may be.  Maybe all this cancer experience is not only about learning to accept the limitations of control, both real and illusory; maybe it’s the final mountain pass for a while and how I manage to find my way over it and down to a level ground again is the lesson I must learn before the next cycle of my life can begin.  Those tulip petals are still so beautiful when they clutter the surface around a glass vase. The slow bending of these flowers, when stems bow over yellowing leaves and pale petals fall, has always been the essence of graceful surrender to me, something I find hard to do and yet something I must know how to do so that my life force will once again flow unimpeded and fearless. The same flowers don’t return but there are new flowers, somewhere, next spring.