Exhaustion. Or Cured.

not to lift one’s
arm
leg foot spirit
from the futon
sputum
rare
these days
but in the chest
if you tilt to the right
if you lift up the ribs
if you dare to inhale
cracking
the bone body
ripping canvas
that
hasn’t even been painted on
cough it up

and when

do I quit the Augmentin?

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Feb 16, 2018: Update, or, The Cat-Scan Interpreted

Feb 16, 2018 Update

 

Updates,

lost ground

each day moves the starting point farther back

 

which means that the beach of recovery unfurling in front of me, surely there, stretches farther than I’d thought before.

 

CT scan of my chest one week ago, read by the radiologist as reported in previous post: no bronchitis, airways all clear, pneumonia in both lower lobes, and a suspicious solitary nodule I omitted from that report.

Imported Photos 00091

But on Tuesday Mike Ellison stepped me elegantly through the cat-scan itself, cut by cut.  “Want to become a radiologist, Dr Murphy?” he asked me –how could I turn that down?

 

Thus it was that the constellation of the interior came into focus for me, the stark beauty of the colorless landscape.  A space scape where images are created by the impedance of radiation.  Where there is no impedance, black.  The greater the impedance, the more solid the white.

 

CT scans are increasingly meticulous in detail and degree of focus; the current technology is seventh generation.

 

Have you learned to read a topographical map (or is that a generational question now?)  I’m not expert at it, but good enough that if I change my internal setting, hills emerge straight out of the map for me, meadows, cliffs, the easier and harder possible routes of passage.

 

So it is with a cat-scan – there miraculously in front of me materialize my own lungs.  Blood vessels are white.  You can see bronchial tubes running longitudinally, and horizontally, and you can see the degree of inflammation by the thickness of the wall of the tubes.  That is, if Ellison teaches you how to look.

IMG_6920

Starting at the top, there’s the trachea, the collar bones, and we’re descending layer by layer.  See these occlusions, the cloudiness?  That’s crap in your bronchial airways.  See the thickness of the wall itself?  That’s inflammation.  So yes, you do have bronchitis.

 

And how on earth could it have been otherwise?

 

But deeper we go.  Each “cut” brings us down farther into the chest, swirls of white on black defining space, black interiors offering degrees of optimism.  Here is that nodule to which the radiologist assigned an ominous cancer risk rate – that is not cancer.  That’s inflammation, says Ellison, and “I’ve only read about 10,000 cat-scans.”

 

 

See the right lung?  Looks pretty clear. Right lower lobe – there’s where you can see the lobes – that looks pretty clear, too.

 

Now the left lung – down in the lower lobe, there’s the cloudiness, the uncertainty.  That is, we’re certain the cloudiness shouldn’t be there; we’re just not certain what it is, except that the radiologist’s idea that it was “resolving” is one we can shelve.

 

So that’s how profoundly lucky I am.

 

To have this exquisite technology.  To have excellent health coverage.

 

And to have this doctor; he and I looked at the cat scan together, then retired to the exam room where we talked – together – about what to do.

 

Which isn’t clear, any more clear than the CT of the left lower lobe.  So we settled on Augmentin (antibiotic) augmented (haha) by Cipro, the antibiotic of the fluoroquinolone class known now for its dire side effects of peripheral neuropathy and spontaneously rupturing tendons – both of which I have had.

 

We will be guided by how I feel, and by what I cough up.

 

We pondered steroid doses.

 

Steroids – I could write a book.

 

A book.

 

Books and books – steroids; what it is to be ill or in-valid in our society; the Faustian bargains we make.

 

What it is to raise a child while so ill; what it might be to be that child.

 

What it is to set that in a context not of a simply (!) “dysfunctional” family, but of a family-of-origin that plays out, on a family scale, a kind of group psychosis like that we saw in Germany in the 30s and somehow – how? – thought we (the Earth’s people) would not see again.

 

But see again, and again.

 

What it is to have one’s primary daily social network be within the medical space station orbiting the earth, where relationships come implicit with hierarchy and depersonalization.  What it is to humanize those relationships and, in that effort, redeem some of the time.  time.  time.

 

My medical update tonight is also the story of a relationship. We know that what I describe here is not common.  And it doesn’t come easily.  It’s the product of lots of hard work, on both my part and the doctor’s.  Of misunderstandings, arguments, tears (those were mine, one particular time when I cried for 14 hours, and then wrote him a letter he told me he keeps in his living room safe, to read whenever he wonders why he became a doctor.)  It’s a story of acceptance – we are very different – and my medical situation is complicated – he accepts me. And I know, absolutely, he will come through for me. And I also know that I am not just a responsibility he carries, but a human being who enhances his life, too. 

 

The books I could write.

 

Need to write.

 

Manuscript of poems on the aftermath of our country’s war in Viet Nam.  125 pages, a novel in verse that I have yet to finish.

 

Literary commentary; political analysis; the emergence of an entire new paradigm for the understanding of addiction.

 

My life story—Afghanistan, Samoa – the US

 

Time, time.

 

Rising to the top of the emergency list, “find a caregiver” has popped up through the ocean’s surface again.

 

With help, I will have a fighting chance, to get at least SOMETHING written.

 

For now:

 

New dimensions: Chinese herbs; acupuncturist; percussion; the solemn vow to become a better person. (insert emoji)

 

Friends.  Reiki.  Soups.  Encouragement.

 

 

MEANTIME (wouldn’t you know it?) (not a “meantime”!  not something *else*!)

 

(Not The Trial! – well, actually, yes, but I’ll write that somewhere else.)

 

Elevated steroids have further damaged my skin – that didn’t seem possible – I’m sporting a patchwork of bandages.

 

Wednesday morning: one wound tear had become purulently infected; I debrided the ulcer that had appeared overnight; saw the vascular surgeon yesterday in Mt View, who debrided it again, put in a skin graft and patched me up – (“debride:” to clean the necrotic or dead tissue out)

 

But how could a wound have become infected, given the antibiotics I’m taking?  Why is the leg swollen?

 

And why is my pneumonia not getting better?

 

To Be Continued, (one hopes) ….

Feb. 12, 2018 update. (How do I serialize postings? This one falls in the story-line marked “Pneumonia.”)

(1) “Ground Glass” refers not to the lower lobes, per the report which I now have read, but to a specific nodule, which I will see in person tomorrow, guided  by Ellison.

(2)  Sputum results from last week render no useful guides for treatment, no specific organism singled out, but does afford reassurance that I am not contagious, and thus not a danger to those about me.

(3)  That reassurance permitted two separate sessions of friends percussing me yesterday, one while I was draped in a make-shift way downward off the futon, the second time sitting in a chair, having just eaten the delicious Chicken Soup they made for me.  These sessions are going to play a significant role.

(4)  Then, today, I had my appointment with the redoubtable Jonathan Holtz, who keyed up an instruction video on bronchial percussion, and with his professional hands and stamina built from years of practice, percussed the entirety of the torso, back front sides, and not only did I cough stuff up then, but 2 hours later I had a sudden fit of coughing — urgent, undeniable, sustained, and —  productive!  I am coughing stuff up.

(5)  The  Chinese herbs seem to be helping.  (Insert photo here, however, of this evening’s misfortune: I’ve ruined yet another pot.  At least I got a quart of liquid off the plants before reboiling them…down to a tragic loss.)

(6) Steroids: had been sustained at the unsustainable 120 mg/day of hydrocortisone, tapering now that the bronchials are open.  I’m at 35 mg bid, or 70 total per day, with less than half that my goal, but the goal distantly in sight.  So weak I’m having trouble standing, walking.  But as long as I’m still up here in steroid outer space, I may as well give myself to the distinctively tinged realm of revelation steroids confer, or consign you to.

____________________

 

 

Feb 10, 2018: Pneumonia

 

Feb 10, 2018:    Pneumonia

A numinous word, round and full.  Swollen with mystery and meaning, medical and cultural history.  A metaphor like all serious encounters with the zone between living and dying, the transition area that stretches dimensions, not just out and back but deep, down and above.  Walk in beauty.  With beauty above me, with beauty below me, with beauty before me, behind and encompassing me, beauty swirling and holding me in this miraculous moment, walk in beauty.

Here in my nascent blog existence is a good spot for a “link.”

That would be in blue — click it and enter another room:

pneumonia, the diagnosis, perhaps, or

what’s the difference between pneumonia and bronchitis and why does it matter?,  perhaps.

Or treatment,  or

alternatives,  or

do I have a chance?

As I develop my blogging skills, I’ll learn to insert photos.  Then a reader could have the option to click on illustrations (you’d want to make that a choice) of what a person might cough up.                        Or how to succeed in doing so.                                                                We cringe and with reason,                                                                          I am impelled to reassure that I’m only joking.                                      But these arduous endeavors matter.

Partly because there is much to be learned, and partly because this is actually the content, the fabric and texture of one person’s daily life — kind of like an intimate tour of someone’s worksite.

So.  More to follow.  One hopes.

______________________

My pulmonologist is the peerless Michael Ellison, and, after weeks, months, of this racking uncontrollable cough, he ordered a CT scan of my chest Friday.

What did the cat-scan show?                                                                What is it capable of discerning and how satisfied are we with its revelations?

How do we understand its discoveries?  What do I learn about how the present materialized — how did I get here? — or how did I get myself here?? — and what do we do now?  How do I rethink my continued present?  that is, now and what comes next.

Perhaps a blog allows different topics that the blogger can post developments on.  Seems My Health, or the Wildly Flailing Fishlines whipping around my head, is one topic.

Another would be The Trial!!.  The reader could tune in each day to find out — No! THAT could not have happened next! — and in the process — more links! — learn something about the law… the legal space station, that environment you enter via a compression/decompression zone where the terms of breathing are redefined.

One’s topics are of course not discrete.  Thus under Health, Failing, I would be able to write, as I did in my journal six days ago,

well, now that the trial has been, evidently, continued, time rolls out before me like a calm stretch of dry sand, and I dedicate myself to a slow, sun-filled convalescence,

and the reader would know that

* I was rear-ended 4 years ago

* it ripped all the muscles off bone in my right shoulder and it can’t be repaired

* the “other side” laughs legally even after I sign a contract with a Personal Injury lawyer

* it’s gone “all the way” to trial but at the 11th hour — well… who knows what happened? (hence the “evidently” above) — because

* I haven’t heard from “my” lawyer since that 11th hour, not to respond to any of my questions or requests, not even to confirm that the trial actually was not proceeding — I found that out from the “expert witnesses” who called me to find out wtf was happening.. but this is another story, as I’ve said, for another serialized blog line.

But if I HAD already written that on-going drama (eager readers checking for updates that would have gotten more frequent and substantially more bizarre the closer we slid toward the trial that, evidently, didn’t happen)

Then I’d be able to say,

well, now that the trial has been, evidently, continued, time rolls out before me like a calm stretch of dry sand, and I dedicate myself to a slow, sun-filled convalescence,

and the reader would follow me.

Except that I was wrong.                                                                          The coughing just gets worse, and it’s not that I won’t recover, but that I am not yet entering convalescence.

First, we fall back.  Get behind the illness, get underneath it, get inside it: discover who it really is, because it is still very much a dominant player, not a memory I am leaving behind.

_______________________

Answers from the CT scan, so far:

  • I have no bronchitis.  There is no infectious process in the airways themselves.  They are clear and open.
  • I say this is good: count every victory.
  • It means (I console myself) that the nebulizer treatments, elevated steroids, inhaled caustic aminoglycoside antibiotic, were not in vain, but succeeded in keeping the bronchial tubes open, thus keeping infection from them.
  • However, the infection lies deeper, inside the cozy pouches of alveoli inside the lungs themselves.  Thus, nebulized medication does not reach them, and the tobramycin will have had no effect on an organism instigating infection in the lungs.
  • There is “ground glass” opacity in the lower lobes of both lungs.  “A resolving process,” the radiologist wildly surmised, a kind of medical mythologizing.  But seriously, I’m curious how the radiologist made that assessment – which direction did she think the illness was going: was it coming or going and how on earth would she have known, from that one moment in time?  Or is this just another existential question?

My pulmonologist (and I can say “my” in a true sense, here, as opposed to “my lawyer,” the doctor and I having worked back and forth, shaping and creating our relationship, for what I am lucky enough to say is many years now) and I agree that “resolving” is the wrong adjective.  This illness is, at best, percolating, or simmering, but actually gathering its forces, forcing our hand.

What to do depends on

  • How we understand what’s causing the illness.
    • Is it bacterial?  If so, how do we identify the bacterium? Fungus? Virus?
  • What targets that organism and what prices do I pay for each possible medication?
  • What can my body stand?
  • Who pays for what?

What to do includes what else to do, to

  • get the stuff out
  • heal

(Here’s where entertaining links can take you to last Fall’s journeys through my own home-made tinctures against Pseudomonas, each step illustrated.)

(I could line up my arsenal of alternative therapies and take a group photo – Chestal, OSHA, organic oil of lemon, Wellness Formula – turmeric, zinc, vitamin C – Co-enzyme Q 10, acetyl-L-carnetine, which I’ve been taking for 15 years for neuropathy – fish oil, well that list goes on.)

*What’s

 kinda takes the wind out of one’s asthmatic sails to LOSE a whole swath of text!!

shit

it was so brilliant  hahahaha

it said something like

  • Loosen and thin secretions
  • Get them to not cling so tenaciously to the warm and comfortable walls of the moist little grapes they fester inside of.
    • all the expectorants and thinners listed above
    • hydrate
    • percussion
    • lavage (link here)

(Kathe Pleasant’s respiratory clinic at Dominican, where decades ago I learned postural drainage – no, I learned that even before I moved back to Santa Cruz, way back in my 20s – remember when K U knelt by my bed in that second-story courtyard apartment I had on University Ave., and I lay over the bed head down and he pocked away on my back with his rounded hands, perseverating about a different idea involving the bed – this was after his climbing accident and head surgery and he’d lost his sense of smell, but unfortunately not his body’s smell)

I asked Ellison whether my percussive pneumatic chest vest might help (see video, somewhere), and he said no – the phlegm is not in the upper airways but inside the lungs and we’re working against gravity

gravity

gravity

the gravity of it all

         let’s get together on Tuesday and go over the cat-scan together,             he says in the tired, kind voice of someone preparing to                       deliver difficult news, which he’s been doing a lot of the last               couple of months with the hospital overflowing with flu and               pneumonia patients, his calm, tired voice after a short nap,                 after a day running ICU and a night on call.

  • Loosen the secretions, cont

 *Chinese Herbs  i’m losing my formatting 

  • The discovery of a remarkable acupuncturist here in Santa Cruz
    • which is the story of a 35-year friendship, a phone consultation with my friend’s acupuncturist in San Diego, the one who coached me through the Mother Tincture in November, an urgent referral from her to her colleague in Santa Cruz, who has taken no new patients in a long time, but who
    • kneeled beside me on the floor of her office foyer as I sat in the ornate and comfortable chair like in a Chinese parlor, and she percussed my back with expertly cupped hands, telling me, “When your friends call and ask, ‘What can I do to help??’, tell them, ‘Percuss me! Come and percuss me 6 times a day!’”
    • While her staff prepared bags of mysterious pungent plant material from China, with instructions for stewing and drinking
  • Get the stuff out
  • loosen, thin, percuss, gravity, lavage, and
  • cough
    • cough
    • cough
    • cough and cough the paroxysmal coughing peeing rattle will I choke each night night after night until maybe bringing up cups of foamy gel; last November ripping an internal abdominal muscle that bled what Ellison estimated to be a liter of blood into the abdomen, bleeding upwards to the skin in a rising purple hematoma I can show you pictures of when I learn how
      • and what subsequently I thought was a fractured rib on the other side as I bent to protect the ripped right side;

x-ray revealed that the rib was not fractured, but had come unhinged

THAT’s where the blog lost it.  where I came un hinged!  

(don’t I get to insert emojis here?) and in the case of my rib, that means slipping under its neighbors, oh so painful.

  • (and who helped me with that? Jono.)
  • (and who’s gonna help me now with percussion? Jono. )
  • Jonathan Holtz, Capitola Physical Therapy, the boss

And THEN,

the future rolls out before me like that beach, only later in the season, and I can rest, rest, and

  • Heal
    • sleep whoa something weird is happening

very painful

the top of my chest is filling g with gas

ggggggg

am I going to burst open?

———-   breathe

                                     easy for you to say, says the asthmatic

breathe into it, like labor

(and off she coughed, into the gathering storm of yet another interminable night… count each one… you’re still here)

IVIG

I start my blogger’s journey.  Today I’m getting 20 g of immunoglobulin G infused into my indwelling port — a single lumen “power port” in my right subclavian — (vein) — at Dominican Hospital’s Infusion Center.  I’m simultaneously inhaling tobramycin (an aminoglycoside antibiotic referenced in my post about Pseudomonas, the “bad bug” that’s causing the current bronchitis).  Tobramycin is the last gate between me and hospitalization; all other options are IV, although there are some antibiotics that I can infuse at home.  I did that with Meropenem a year and a half ago, after Ray Shaheen scraped away the gnarly infected tissue in both of my shins and fixed me up with “alographs” — not skin grafts taken directly from someone’s skin, but layers of tissue from placentas! that are thriving with growth factors and optimism.

The offending pathogen then was also Pseudomonas, and the Meropenem wiped it out.  I infused a bulb of it three times a day, leaving my port “accessed” — that is, with a little line hanging from it all the time. (This meant I couldn’t swim for a month.) ! The bulbs got delivered directly to my house by the medical supply company the hospitalist at El Camino made arrangements with before she discharged me.

The month-long at-home IV treatment was overseen by a visiting nurses agency, although I administered the meds myself.  But I’d been discharged from a hospital.  Evidently, arranging this is so bureaucratically daunting from outpatient status that I would have to be hospitalized here (Dominican, Santa Cruz) in  order to start the administration, and then be discharged on the Meropenem.

Well, how could this possibly be interesting?

I mean, right now, instead of being trapped in this cave of a curtained-off “bay” in the Stand-Alone infusion center specially designed a few years ago, and more about that later, I could be rereading Albert Wendt’s books and figuring out how his writing mirrors, gives voice to, and consequently helps create a shift in a generation’s experience with colonialism, and its understanding of root causes and connections — which in turn brings memory — the recall of experiences received unconsciously — into consciousness, and helps us relive those experiences in increasing clarity — which can be emotionally draining, but can also rip open veils between our experiences and our possible futures.  It is the basis for creating entire new psychologies, the stuff that compelled Frantz Fanon to his writing — Black Skin, White Masks — and then, in the last 6 months of his life as his cancer progressed, to dictate The Wretched of the Earth to his wife, the urgency to capture what he absolutely knew.

We read The Wretched of the Earth out loud at night around the campfire up in the Trinity Alps in 2012 during deer season when Devin was in college.  It was cold enough for beanies and flannels, hot chocolate and gluten-free cookies (no they don’t require temps any diff from other cookies), and we were surrounded by the bigness of the wilderness and the smallness of our own lives.  Spirits of hope, who in my experience are always the companions of despair, swirled protectively behind our range of vision as the totality, the organism, the structures and consequences of injustice came into compelling clarity.

I understand Fanon’s urgency.

I don’t know, but maybe I also understand the urgency of his wife, taking the dictation.

Anyway that’s just one of the current projects.  I still have all my letters to Nadine Gordimer to write up, with their discussion (analysis?) of her books; of Wally Serote’s mind-blowing novels about the war in South Africa against apartheid; of the differences between their books and the self-indulgent nihilism (no matter how lovely the prose) of Coetzee, and send them to Serote, since Gordimer died before I could transcribe my dictated ideas and send them to her.

I could be doing these things, and writing new poems, and compiling finished poems into manuscripts.  I could be writing my two years in  Afghanistan when I was 10-12, and how my body has personally lived the arc of US imperialism in the last 65 years — isn’t that true for all of us? — or is it?

But I could also be dead.

Without the tobramycin, and the nebulized albuterol and ipratropium bromide to open the airways first; without the IgG hanging from the IV pole; without, for that matter, the cortef, coumadin, plavix, synthroid and 10 other medicines each day, I’d be dead.  Over and over.

So: ontheonehandontheother a coin on its edge, flipping and spinning.  I told my son that I’ll do just about anything to avoid going into the hospital.  Hospitals are, objectively speaking, not safe for me. My PTSD is also considerable and hard-earned.  But, if the hospital is where I have to be, that coin flips, and I am so ever grateful profoundly grateful — there’s a hospital right over there, near my house.

(Sometimes, that still won’t be good news.)

Albert Wendt:

Albert Wendt

Wendt has taught at Samoa College, the University of the South Pacific, the University of Hawaiʻi, and the University of Auckland.

Do tell.  Albert Wendt was my English teacher…at Samoa College, the Samoan government-run secondary school in Apia…exactly 50 years ago. (And how I am circling back to him now is, again, another story.)

Serote: here’s a helpful bio from the Poetry Foundation, which also lists Serote’s books:

Mongane Wally Serote

Gordimer: this is Wikipedia for what it’s worth, which is quite a lot, I think.  Includes complete list of her writing:

Nadine Gordimer

Here’s her obit in the NYT:

Nadine Gordimer (#2)

 

Franz Fanon: two links: Britanica, and Wikipedia

Frantz Fanon

Fanon #2

You can see i don’t really know how to create links yet.