cancer · grace · heroism

Is a hero born, or made?

me December 14 2012 oakland plateletsThis is the question I posited to my students as we began our novel this week.  Their responses reflected the duality of the answer.  A person may be inherently brave, but unless they are given opportunities to produce that quality, they may never be so.

As the dawn arises on Yom Kippur, 2018/5779, I note that it is 6 years since the morning I was diagnosed with Leukemia (AML, for the curious).

I use the Jewish calendar to mark my date, as Yom Kippur is a whopper of a day to be diagnosed.  According to tradition, the evening of Yom Kippur marks the closing of “The Book of Life,” sealing us—or not—for the coming year.

Not overly cataclysmic, is it?

On this day, 6 years ago, the dawn rose on me slightly wasted away.  I hadn’t been able to swallow much food; I’d had strep throat for almost a month.  My tonsils were white with infection and swallowing unleashed a spire of pain.  Down at the other end of things, my digestion held nothing in and Ganges’ water poured out.

I felt frail, had rippling spots in my vision, and for several days now, had been suffering night sweats and chills, my brain beginning to go fuzzy, thoughts arriving with little to adhere to.

Clearly, I was sick.

But I’d also just started a new job and I was sure my health insurance from the graduate school I’d left in May had lapsed, so I hadn’t seen a “real” doctor.  A friend did take me 2 weeks earlier to a hacienda clinic somewhere in deep Oakland, where the doctor — who was friendly and competent — took a throat sample, confirmed strep throat, and prescribed antibiotics.

Two weeks later, my throat was still belodged with golf balls.

On the morning of Yom Kippur 2012/5773, I called my friend to drive me to the hospital.  When I opened my apartment door she said, “You look like sh*t.”  G-d loves true friends;)

I’d finally accepted that eating yogurt, drinking chicken soup, and swallowing herbal pills were not going to cut it, just as the Western meds had not.

On the drive to the hospital, my friend pulled over so I could puke out the open door.

I waited on a stretcher in the ER.  It was a few hours and not much else later that the staff came back to say, “You do have health insurance.  You are covered by Kaiser hospital—go there.”  And they loaded me onto an ambulance to travel across town.

(I would later discover that my grad school was a little procrastinate-y about canceling graduates’ health coverage, so mine was set to expire after September.  It was Wednesday, September 26.)

On a cot in a private ER room in the bowels of Kaiser hospital, I lay for several hours.  The nurses had put in an IV of saline and I was feeling remarkably better.  Maybe it was just extreme dehydration?

Sometime around 10pm, I asked one of the nurses occasionally checking in on me why I was still there.  I felt better.  Give me some gonzo strep meds, and lemme go.  She replied that, frankly, she didn’t know why I was still there either.

Close upon midnight, a cute doctor walked into my small ER room.  I can’t recall if I was laying down or had sat up, but he rolled the tan pleather-covered stool over to my cot and sat himself down beside me.

“You do have strep throat.  You also have Leukemia.”

. . .

. . .

. . .

In the next handful of minutes, I asked him for something to write on.  Somehow there wasn’t anything, so we tore apart a tissue box so I could write down what he was saying.  My brain, fuzzy before, had become swaddled in cotton.

What I wrote on that cardboard scrap were a bunch of numbers.  They were about my blood.  Those numbers told the doctor that 48 percent of my blood was cancer.  Half of my body was invasion.

Deep into the night, the sun having set on Yom Kippur sealing everyone into — or out of — The Book of Life, this man told me I now faced death.

He told me a few more things, like I wouldn’t be going home that night.  Like the next day, Thursday, they’d take me to surgery to insert a “port” in my chest.  Like the kind of chemo they needed to give me couldn’t be fed through my paltry extremity veins; it had to be dumped directly into my heart.

On Friday, the radioactive liquid that nurses and doctors would wear thick rubber gloves and a yellow haz-mat suit to deliver, would begin pouring into me.

Later, I would mis-hear one of my oncologists tell me my cancer was one that had a 20% mortality rate.

I would, even later, discover that he’d actually said 20% survival rate.

That mis-hearing meant that on the phone with my best friend back East, I would get to tell her that this was a good cancer, an easy cancer, a no-worries Hakuna Matata cancer.

And that would help to save me.

I’d spend 10 of the next 24 weeks in a hospital room.  Because of the type of cancer and treatment I’d receive, I needed to be hospitalized for a full week for each infusion of chemo… that is, after the first round of chemo when I’d need to stay hospitalized for an entire month.

I … “celebrated” (not at all the right word, but I leave it for irony) my 31st birthday in a hospital gown.

But.

I began to figure it out, if there was such a thing.

First off, I began again to write my daily blog.  I’d called one of my best SF friends and asked her to write on Facebook what had happened (Leukemia) and where I was (Oakland), and for people to come visit me.

I was never, ever going to go through this madness alone.

My nuclear family live/d on the Eastern seaboard, and my created family lived in The Bay.  They better come visit me, yo!

And they did.

The nurses continued to remark that they’d never seen someone with so many visitors.  There was not one, never, not even one day that I spent without a visitor to my hospital room.

There were friends I hadn’t seen in several years since moving from San Francisco to Oakland.  There were folks who didn’t know me directly, but had heard of my call for visitors and came, in droves, to sit with me, laugh with me, read to me, cry with me.

That first week, a petite woman I knew only by sight came tottering into my room laden with an enormous, fuzzy blanket because I’d told her friend that the blankets “on the inside” were threadbare and depressing.  I’d lose 25 pounds that first month.  I was cold.

Slowly, the “figuring it out” thing looked like: visitors (but also a sign on the door that read, “Do not disturb, Meditating.”), blogging, a subscription to Netflix for the first time, my first smart phone so I could check the Kaiser app, a clock radio tuned to the 24-hour Christmas music station as hospitals are a cheerless and musicless sterility, markers and notepads, get-well cards from the whole country taped over the staid hospital paintings, a garland of dried flowers as live ones weren’t permitted because of my vulnerability to disease they may carry, earplugs, an eye mask, so many warm hats, normal street clothes instead of a hospital gown so long as they could access the port in my chest (One day, a doctor walked in as I was puttering about the room and asked me where the patient was!).

When I felt able, I walked around the glassed-in circumference of the floor trailing my IV stand I’d named “Fred” because he was my dance partner, towels and soap from home so I didn’t feel like an inmate (I still can’t abide the scent of Kaiser hand-soap and so hold my breath).  When chemo brain wasn’t on me (think “mommy brain”: a vague dissolution of thoughts and inability to focus your vision on a page) I had books to read, comedy dvds from one of my first San Francisco friends, and a yoga mat so I could stretch my bed-ridden body on the cold, germy, linoleum floor.

Travel mugs and tea bags, bottles of fizzy water as flat water tasted like metal, crates of Orgain protein drink as the Ensure they supplied went straight through me like the vegetable oil it was.

During this time, visitors would tell me how brave I was, how courageous.  That they’d read my blog and couldn’t believe how strong I was being.  How I was, with such certainty and determination, traveling through a gauntlet that no human being, let alone a thirty-year old woman, should be required to navigate.

At the time, this did not feel like bravery.  Bravery feels like a decision, like something you’ve chosen to do.  This, the manner with which I was going through cancer, did not feel like a choice — it felt natural, like breathing, like Of Course I would reach out, accept help, eat chocolate-chip banana bread and wear jeans.  (tearing up over here)

Of Course I would make brand new friends.  Of Course I would laugh.  Of Course I would rail.  Of Course I would upset doctors’ orders and go the hell home when it was marginally safe to do so at the end of my infusion weeks.

OF F*CKING COURSE I would dispel that darkness back from whence it came.

Come on, man, who do you think I am?

Well.  I’ll tell you.  I was not a woman who would have predicted she’d perform with grace under pressure.  But I am someone not surprised by it.

The forge within which this graced power was found was both existent and new.  The iron and lace with which I juggled daily and hourly trauma was both inherent and gifted.

The ocean of love that I sailed atop was both revealed and materialized.

What makes a man?  Is it the resident components of one’s constitution, or a sum that is worlds greater than its parts?

What does The Book of Life record: our past or our future self?

I must trumpet the acres of new growth and discovery that have germinated from this hardship.  But, too, I must acknowledge the seeds, roots, and Redwoods of faith and fortitude that were already there.

I am, at present, who I always and ever was, and I am, at present, who I never imagined I could become.

 

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cancer · love · mindfulness

What does cancer mean?

8.17.18.jpgWhen I was going through chemo 5 years ago, a close friend brought me the audiobook, Love, Medicine, and Miracles.  In it, Dr. Bernie Siegel relates that in his decades’-long study of cancer patients, they nearly all followed similar paths that led ultimately to a cancer diagnosis.  This path crescendoed in despair.  In fact, he writes that he believes cancer to be “despair felt on a cellular level.”

Further, another friend lent me her copy of, You Can Heal Your Life, wherein Louise Hay “diagnoses” each illness with a core belief.  Blood disorders, like my Leukemia, were associated with “actively killing joy.”  Which, I suppose, is another way to say despair.

Reading these at the time, I felt 100% in agreement with these “pre-existing conditions” that caused me to be ripe for the cancer plucking.  Partly because it meant that there was something I could “do” in the vulnerable and uncontrollable shadow of The Big C.  If I had in some way caused my own cancer, then I could in some way heal it.  And whatever the veracity of correlation or causation, because of this new understanding, I dove more deeply into my spiritual practice, into overcoming my underearning/underbeing, and into sharing more of who I am.  I actively, and marrowly, became more courageous.  And I believe it helped to save my life (and still does).

When I consider these passages today, I find that I have to be less sure about what they mean for other people.  Because I found these words so empowering and galvanizing and ultimately life-saving, I want to offer the same understanding to others who are facing the same challenges.

But not everyone believes, wants to believe, will ever believe that their cancer is of their own making.  I can get that.  I must get that if I want to maintain relationships with those people in my life who are facing down the barrel of diagnosis.

My best friend since childhood is having cells retested.

When I think about my role in her life, it’s not as a sage of “you can heal your life.”  The consideration of that feels so inauthentic and distancing, I could puke.  What my role in her life today could be is similar to that about which I wrote yesterday for my students: to be there, to witness, to love.

I want to make it “fixable” (not that there’s anything to fix—there’s no diagnosis as of today), because if it’s fixable then it’s controllable.  And if it’s controllable, we’re not powerless, and if we’re not powerless, we can achieve our desired outcome.

But.  That’s not the way life, or death, works.  Well, certainly not my control of their lives.

I am multitudinously grateful that my 2 friends gifted me those books while I was grasping for a lifeboat, for ground in a storm of tests, infusions, and sickness.  I am sure on some level I attracted those passages into my life (if you’re into that sort of thing), because they were what I needed so very much to weather it all.  I needed a course to follow, an anchor to hold.  And understanding that I could bring myself out of the darkness of disease (in conjunction with Western and Eastern medicine) felt, as Bernie calls it, miraculous.

And with a 20% 5-year survival rate?  Well, fuck cancer indeed!

However, today I must stand in the truth of what is needed at this moment, and that is not to intone to my friend any piece of how she has to change her life.  I have absolutely no idea what the truth of her life is, and I have no place offering up my opinion.  (If there’s anything I learned during cancer it’s that opinions [about health] are like a**holes: everyone has one, and usually they stink.)

There is so much powerlessness in the face of disease, and lo! that I want to find the tether to hold and the sword to rail!!! … what I want is of no consequence here.

What I need is to be present with my friend.  To be loving and generous, and also to be freakin’ normal.  Whether or not there is a diagnosis in my friend’s future, there are those in my life who do have that diagnosis and those who, unfortunately, will.

This time is my planting ground, my training ground, for who I want to be when these circumstances arise, as they inevitably will.

So, what does cancer mean??  Nothing, man.  It means nothing—except Love and Be Loved.

 

cancer · humility · self-love · surrender

The Clatter of Swords.

clatter of swords photo
There is a vacuum that happens when one admits surrender. When you have finally laid down your sword, all your fight, all your shaken fists at the sky. You let it all drop, all of it, knowing you can no longer fight, that you are defeated.

In that moment, when your armor clatters to the ground, and you look up toward your opponent with your empty, calloused and bloody hands, you experience relief.

There is nothing more to do. It is over. You may not have won, but no longer are you fighting either.

If, in that moment of surrender, you are able to hold that place of vulnerability and uncertainty, it has been my experience that newer, better ideas and actions, and strange serendipities, come to fill the void left by my own tenacity and fierce determinism.

If, in that moment, I admit defeat and then subsequently draw up my arms again, thinking, wait, no, there’s something else I haven’t tried, I can still will this thing, then I am lost, again.

I am in that moment. That moment of choice, when I will either say, no, this can’t be right, I still have a few ideas up my sleeve; or I will say, you know what, I give up, I have no idea what I’m doing, I need help, and I am willing to sit here in the discomfort and uncertainty of change.

This place is what some people refer to as hitting bottom. Many of us hit bottom around many different things: relationships, sex, food, debt, shopping, television, even reading can become an addiction at the expense of engaging in real life. Anything that we think we can out-master by the sheer will of our mind and will-power, anything that keeps proving to us that we can’t.

I am at a bottom, of a whole cornucopia of things. I think it’s what all the breakdowns have been lately, the bedframe one, the one in the hospital last week, the impossibility of me being able to do on my own what I have been doing on my own. The impossibility of continuing to struggle forth in single-handed combat. I don’t know any better. My best ideas have led me to being single, broke, and existentially agitated for years. And I can’t will, wish, pray, or beg my way out of it. I have come to the bottom.

The end of my resources, the end of my ideas. I think it’s part of the calm of yesterday’s blog, the realization that I’ve come to the end of the fight, that relief of the end of a battle. Recognizing I’m not the force that will rescue me, I’m just the conduit. I’m just, in some way, the pawn.

And, please don’t misunderstand that; I have free-will, I just mean that in the end (to tragically mix metaphors), there is a stream, and I can follow its course, or I can fight against it, because I still think my answers are upstream. If I allow myself to float, to let go, to be taken by the river, to stop resisting that which is true, then I have the chance to gain some of my power back. Supported, strengthened, and aimed in the right direction this time.

I think my soul-weariness has been this end of the battle. I know I have “better ideas” lurking in my mind, ways where I can “figure out” how to get out of the jams that I’m in. But, perhaps just maybe, I have learned that I’d like some other ideas, please. Perhaps, just maybe, I’m willing for today to sit in the serrated uncertainty of surrender, let myself rest in the fullness of that ease, and allow myself to be open to floating downstream.