Sunday, May 1, 2016


   I have completed three cycles of chemo in the last two and a half months, which has left me feeling exhausted, burnt, feeble, brain addled, unsteady on my feet, decaying teeth too, lips so burning I can only taste burn, tongue and glottis swollen, face red and swollen and itchy, skin in patches is swollen red and itchy, stomach aching badly, serious lack of digestive function, feet tingling with neuropathy, knees and wrists painful all the time, and more. Oddly the only sensation I don't recall is a headache this time.  I  should also mention that my body is so seriously compromised that I am open to infection from any source. Even the mold in my refrigerator could be dangerous (I know, it is to anyone!)  Just kidding. But going out in public is not a great idea at this point.

   So my next step will be radiation which I admit is frightening me even more, although I think chemotherapy is more invasive and overall affecting of the body.  Radiation is confined to the area where the cancer was found -- at least in my case -- because of the way it is administered. I promise not to go into any details because they are not good enough for polite company.  I have ovarian and endometrial cancer, so perhaps you can guess.

   I am going to share my friend Scott Folsom's account of the radiation department at Kaiser Sunset which is also where I will go for treatment.   His words are so much more eloquent and expressive than mine ever could be:  

IN THE SUBBASEMENT of a building at Kaiser Sunset – on a floor called – in an architectural anomaly – ‘The Atrium” – is the Radiation Oncology Lab.

The waiting room is the atrium, the ceiling four or five floors above, all skylit+airy, ranks of seats facing large screens that summon the next patient into Radiation Therapy – into Rooms 1A, 1B, 1C and 1D, plus 2A, 2B, 2C and 2D.

You meet good people in the waiting room – waiting for their names to go up on the screen. We are going to be treated. We are going to get better.

This is not the dismal institutional waiting room from Aleksandr Solzhenitsyn’s Cancer Ward.

Also in the seats are those waiting for patients to be treated: spouses and family members, friends and caregivers. Next of kin. They are worried. They have seen the actuarial tables.

My name comes up and I head down the hallway to your room, 2B. or not 2B. Past the lead lined doors and the shielded+reinforced concrete partitions. The path is a maze of turns; radiation travels in straight lines. That stuff I learned in Physics comes in handy. I would imagine that the entry to the Pentagon Situation Room is like this, but with more flags.

2B: The Machine waits, all apple green and huge. A proton beam linear accelerator, to be specific a Varian TrueBeam™ Radiotherapy System. The internet says these puppies cost upwards of $3 million each.

Helpful young technicians are eager to help – after asking a few trick questions to make sure I am who I am say I am. (The danger of someone else getting my radiation therapy must be huge!)

I am laid on a table and aligned with lasers to discrete tattoos on my body: Aim radiation here!
I am a specimen on the stage of a microscope – like the old Monsanto Ride at Disneyland.

The table rises and pushes in, into the center of the Varian TrueBeam™ Radiotherapy System as the helpful technicians all leave the room and the door closes with a click; they will be watching the rest on computer screens – remotely targeting invasive malignancies like drone pilots in the Nevada desert.

(Needless to say your cell phone stopped working the second you left the waiting room; the wi-fi here is for different purposes!)

You are left alone with Your Machine, which whirrs and clicks and buzzes, rotating about you on its multiple axes, delivering death to your enemy – which is ironically you, gone ironically wrong.

Alone with your machine your mind wanders to the poem by Richard Brautigan:

I like to think (and
the sooner the better!)
of a cybernetic meadow
where mammals and computers
live together in mutually
programming harmony
like pure water
touching clear sky.

I like to think
(right now, please!)
of a cybernetic forest
filled with pines and electronics
where deer stroll peacefully
past computers
as if they were flowers
with spinning blossoms.

I like to think
(it has to be!)
of a cybernetic ecology
where we are free of our labors
and joined back to nature,
returned to our mammal
brothers and sisters,
and all watched over
by machines of loving grace.

And as this seems to make cosmic sense the background music, which has been piped in from the eighties for this particular moment, segues to a new tune:

Well now, I get low and I get high,
And if I can't get either, I really try.
Got the wings of heaven on my shoes.
I'm a dancin' man and I just can't lose.
You know it's all right. It's OK.
I'll live to see another day.
We can try to understand
The New York Times' effect on man.

Whether you're a brother or whether you're a mother,
You're stayin' alive, stayin' alive.
Feel the city breakin' and everybody shakin',
And we're stayin' alive, stayin' alive.
Ah, ha, ha, ha, stayin' alive, stayin' alive.
Ah, ha, ha, ha, stayin' alive.

And ironically, with a smf hat-tip to the Brothers Gibb, that’s why we’re all here …wherever here is.

¡Onward/Adelante! - smf

 Varian TrueBeam Radiotherapy System

   Sometimes I think reading all of this information is not the best way to keep calm. I know I can't be brave and positive. But I do think arming myself with information is a good idea.  Another friend who has been in remission for 15 years after he was told he should be dead told me to do as much research as I can -- do an International Google feed.  That seems a great idea!!
   But will I have the ability to read it all?  Right now my eyes are suffering. I'm surprised I can keep reading my email.  But I feel compelled to tell this story.  To share the ordeal so others won't feel alone.  WE DID NOT CAUSE OUR CANCER.  WE ARE NOT AT FAULT.  WE ARE NOT BAD PEOPLE.  Yes, we can try to be positive, but we also need to feel those deep, down, dark feelings of forboding, that this may be the last spring that I can see the goslings at the lake, or the flowers in bloom, the narcissus, the wisteria, the roses, the cherry blossoms, the imported iris, etc. etc.   I hope it won't be but I really don't know.

Scott Folsom's Blog -- really great to read this!    
If you really want to know how endometrial cancer is treated by radiation -  

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