Thursday, July 12, 2012

a little sepsis here, a little sepsis there...

hey, all.

fred gently got me into our dear ruby, the honda crv, and whisked me home from the hospital this evening.

i was pretty darned sick last weekend, worse on monday, but knew i had the weekly infectious disease appointment, so i figured i'd whiteknuckle it until then -- 1 pm, tuesday.

tuesday, my temp was 99.6 when i woke, but i was feeling clunky as all get out.  i did the morning routines, including infusing the i.v. antibiotic.  an hour or so later, it was 103.5 and i ran some clothes through the dryer  so that i could pile them on me and get warm.  you surely felt the world shaking about then.

but i could make it to 1 pm.

we got there, me with quilts, and involuntary tears, fred just tired of it all.

the receptionist informed me my appointment was at 11:45.  i told her i was sorry and that i was really, really, really sick.

so they found this very nice PA with whom i had never worked and he said "whoa, girl, you're sck."  i said, "sniff...  i know... sniff."  he got the head dude, who looked me over from a safe distance, and said, "man, you must feel like crap." he then outlined my two options:

1.  check in across the street at Hotel Hospital, OR
2.  while i was in his office's infusion center, i could let them "juice me up" with some i.v. fluids while they did labs, changed dressing, etc.

oh, and since clearly there was some new infection in play, i could also receive the first infusion of the new drug he was adding.

i opted for getting juiced up.   it sounded like the closest thing to sex that i'd been offered in... a while.

but as i settled in back in the infusion center, things got harder, then easier, then harder and harder.  as the last of the juice ran in, i went crazy.  the pain was beyond belief.  i couldn't breathe, everything and something was very wrong.  "call 911," i finally yelled and did curly-q thingies with my wheelchair.

the staff at id-dood's place is wonderful but i am quite sure i frealed everyone out.

and blah blah -- i was taken across the street to the ER by stupid ambulance.  can't wait for that bill.

at one point, we had three abx running.

but my temp came down a degree every 8 hours or so.

for the second time in a few weeks, i got culture results:   blood culture results came back positive. nothing like a little sepsis to make life interesting.

anyway, i am home again.

Monday, July 9, 2012


I just stumbled upon a new endeavor to help people with crushing medical bills.  It is called and was just launched on May 24, 2012.

A sign of class?  One of the first descriptions online:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
― Dr. Seuss, The Lorax
Their "we are" statement is simple enough, as well:

We are a non-profit corporation that gives money to patients who are enduring the fight of their life with their health. We feature the details of their hardship on our website, and publish their stories for anonymous individuals to read.  When they find a patient they would like to help, they can donate specifically to them. 
Our featured patient is William, a 56 year old from Virginia who is suffering from cancer.  Click here for more details on his story and how you can help. 
Are you someone who needs financial assistance due to a medical hardship?  Perhaps you are suffering from cancer, and in need of life-sustaining treatments.  Or maybe you have been in a car accident and are requiring multiple and expensive surgeries. 
Whatever the reason- see our recipient page to find out how you can be a recipient on this site.

Currently, four persons serve on the Board of Directors.  They are actively seeking "an experienced physician to serve...  If you or anyone you know might be interested, please email" 

Sunday, July 8, 2012

Trees do bend

Uploaded by  on Feb 1, 2009
Composer, Gregory Norbet, performs his song "Hosea (Come Back to Me)" in concert on Cape Cod. See more: . This song dates to the early 1970s when Gregory was a monk in the Weston Priory in Vermont. 


Come back to me with all your heart,
don't let fear keep us apart.
Trees do bend, tho' straight and tall;
so must we to others' call.

Long have I waited for your coming
home to me and living deeply our new life.

The wilderness will lead you
to your heart where I will speak.
Integrity and justice
with tenderness you shall know.

Long have I waited for your coming
home to me and living deeply our new life.

You shall sleep secure with peace;
faithfulness will be your joy.

Long have I waited for your coming
home to me and living deeply our new life.

Father Death by Allen Ginsberg (renamed repost)

"The Tyger" by William Blake

as sung by Allen Ginsberg
w/ Steven Taylor & Jim Jones
Recorded by
The Jack Kerouac School of Disembodied Poetics,
July 1988

courtesy of superheronamedtony's YT channel

A beautiful thing, the free download and streaming from the internet archive project at Naropa University:
 A reading by Allen Ginsberg performing William Blake's Songs of Innocence and Songs of Experience. Songs of Innocence includes: "The Shepherd," "The Echoing Green," "The Lamb," "The Little Black Boy," "The Blossom," "The Chimney Sweeper," "The Little Boy Lost," "The Little Boy Found," "Laughing Song," and "Holy Thursday." Songs of Experience includes: "Nurse's Song," "The Sick Rose," "Ah Sunflower," "The Garden of Love," "London," "The Human Abstract," "To Tirzah" and "The Grey Monk."

And then, there is the always lovely PennSound, center for programs in contemporary writing at the University of Pennsylvania, and their New York, December 15, 1969 recording of Ginsberg singing William Blake -- plus PoemTalk podcasts.

By William Blake

Tyger! Tyger! burning bright
In the forests of the night,
What immortal hand or eye
Could frame thy fearful symmetry?

In what distant deeps or skies
Burnt the fire of thine eyes?
On what wings dare he aspire?
What the hand dare sieze the fire?

And what shoulder, & what art.
Could twist the sinews of thy heart?
And when thy heart began to beat,
What dread hand? & what dread feet?

What the hammer? what the chain?
In what furnace was thy brain?
What the anvil? what dread grasp
Dare its deadly terrors clasp?

When the stars threw down their spears,
And watered heaven with their tears,
Did he smile his work to see?
Did he who made the Lamb make thee?

Tyger! Tyger! burning bright
In the forests of the night,
What immortal hand or eye
Dare frame thy fearful symmetry?


"My father died while I was out here. So I flew black... back, and on the way [home I w]rote a blues: Father Death Blues."

Hey Father Death, I'm flying home
Hey old man, you're all alone
Hey old daddy, I know where I'm going

Father Death, don't cry any more
Mama's there underneath the floor
Brother Death, please mind the store

Old Aunty Death, don't hide your bones
Old Uncle Death, I hear your groans
O Sister Death, how sweet your moans

O Children Deaths, go breathe your breaths
Sobbing breasts'll ease your deaths
Pain is gone, tears take the rest

Genius Death, your art is done
Lover Death, your body's gone
Father Death, I'm coming home

Guru Death, your words are true
Teacher Death, I do thank you
For inspiring me to sing this blues

Buddha Death, I wake with you
Dharma Death, your mind is true
Sangha Death, we'll work it through

Suffering is what was born
Ignorance made me forlorn
Tearful truths I cannot scorn

Father Breath, once more farewell
Birth you gave was no thing ill
My heart is still, as time will tell.

July 8, 1976 (Over Lake Michigan)

"Toddlerish," Harrumph!

Courtesy of Colouring Pages

I've been remiss about updating the goings-on with Miss Kate McRae.  She and her family moved to California this summer, as her father is pastoring a new church.  That has meant many scary and exciting changes for them all, maybe especially for Kate -- new doctors, nurses, therapists -- the loss of beloved helpers and friends who were with her from the beginning, three years ago now, of her cancer journey.

The child has an attitude.  I love it.  I am also glad that I don't have to be on the receiving end of it, sometimes!

Anyway, we *all* have attitude, and Kate has earned the privilege of maybe developing a little extra.

I loved this story that her mom, Holly, told about two weeks ago, when Kate went in to one of her new facilities to have her port removed (a wonderful feeling, one of the few that I can truly relate to!).  It's obviously more of a big deal for kids than adults -- when mine was removed it was the most ho-hum procedure ever.  And except for the infection (but, of course!) afterward, it was just a wonderful breeze.

Kids, though, may not hold still, may get upset, and may I-don't-know-what-else, so they're put briefly under general anesthesia to yank that old port-a-cath out.  For these kids on the cancer journey, it has such significance, this small procedure.

For Kate, it's a mixed mixture of mixed up feelings, I presume.  She is off treatment:  She has no sign of tumors (yay!) (oh heck, double yay!) but she is at very high risk for relapse, however there really remain no more appropriate, available protocols to keep her on, so stopping treatment is terrifying for her parents.  What Kate feels about it, I cannot, and wouldn't dare, imagine.

But -- whatever -- getting that sucker out of your chest wall, and its tentacles out of your major blood vessels?  Cool, no matter what. Just as my Dad and my brother Grader Boob managed to convince me that I could see the men walking on the moon through our backyard telescope, I imagined I could feel the tissue surrounding that BARD port-a-cath laughing and doing cartwheels when it got yanked.

Kate had a rougher time of it, I am sorry to say.  As usual, Holly tells the story best, having been there, and understanding her daughter in the deep way that some mothers can:

Our sweet girl had a big day today. A big day that started crazy early. We headed out at 4 am to go to CHLA for surgery to have her port (a central line catheter in her chest) removed. 
As one of the nurses came in to evaluate her, and ask the same questions the 3 people before her had, she eyed Kate's demeanor. She softly suggested ordering Kate a mild sedative prior to surgery, thinking she was highly anxious about the surgery, as Kate sat with her with her arms crossed facing the wall. A frown prominent on her pretty little face. I smiled and told her I didn't think she was nervous about the surgery at all, rather she was simply very disturbed by the surgical gown. Kate validated my belief and said she felt it was "toddlerish". I laughed as I relayed the information, however only adding insult to injury. So no sedatives prior were needed, rather promises of possibly one day coming up with a little more "appropriate" gown choices. She was simply upset they would think it was okay to make 8 year old girls wear babyish gowns, especially without undergarments! She wasn't disturbed at all by the idea of general anesthesia and surgery. 
Kate did super well through surgery, Dr Stein was wonderful and even cleaned up her scar from the previous surgeries.  
Tonight she is sore but spicy! (How I always know she is really okay). Thanks for praying. Will update more on Friday as we reach 3 years since Kate's first diagnosis of brain cancer.