On Fire

Bury me amongst the trees

Where redwoods overlook the sea

From atop a crossed mountain

Where my body will quicken

From flesh into sand.

Underneath the needle-bed

Blanket, the fibers of my hair weave

A way through the wind-filled leaves.

Heat my voice with borrowed sun

Which once kissed my cheeks

Where freckles reached to meet.

You now hear my broken chords

Faintly in the the distance unmoored

Tasting the salted shore. Safely clean

I lay down on a million fine grains of sand

Not feeling myself again I repeat

To no one: I am an empty vessel.

I’ll still wake every morning

Habitually, my hands still sleep

Parting the fitted sheets aways,

Long gone I still reach after you.

I am the water, then the dew

Maturing into a pinguid mist.

The palms clap and sway to

Conduct the band at noon

To play a song of our bequest.

The hour’s imminent.

Time to ride a wicked dream on

A silk weaved carpet twisted

With last night’s ghostly breath.

Come take inventory of my remains

Should the tree mark me no more.

The lumber that’s become of me

Taken over by the shore. I am a house

Now – shelter for a family to whom you

Lost me once again. My soul holds up

The walls now, my legs hammered

Into floorboards, arms encircle

Each bedroom where the dormers rest.

My fingers lace together to build

A painted white front porch,

That’s my hips now a swing

Hung there, under the eaves.

Look up to see my head holds high

A roof; my back’s now the front door

My eyes frame All the windows, my heart beats

In the kitchen. My birds left the

Forest knowing where my mouth now sings

And the woodpecker that lived inside my trunk

Hollowed out my attic in the spring.

Let me stand strong and steady

For at least a hundred years.

By then, long gone, you built your own

And our lives live on, unworldly yet eternally.

Looking down at the rubble of what’s

Left of my body in the demolition heap.

What at all might grow from me who once

You buried underneath a tree?

Let me now burn someone’s hands

Someone lit afire from my plight.

It’s cold outside where I once stood

In the trees and dark of night

And I’ll burn vast and luminous

My spirit gives newborn light.

Bone Deep: the painful reality of metastatic cancer

Imagine an unreachable itch. The unscratchable kind. Yet it’s only an itch. Imagine bone deep insurmountable, untouchable pain, like you’ve never felt in your life. Pain so constant there’s little relief but addictive medication, some forms of natural remedies, and whatever you find through trial and error, works for you individually.

Metastatic cancer pain exposes you for who you really are. It’s not for the weak, the faint-hearted, the complainer or the meek who are afraid to stand up for themselves. If your best qualities consist of empathy, neatness, downhill skiing, contact sports, or binge watching hours of television, this type of pain shan’t suit your lifestyle. Oh and if you work, metastatic cancer pain probably won’t help you get that promotion you’ve waited years to earn. In fact, you may even get fired for taking too much time off or for HR simply discovering your cancer diagnosis.

Oh, shit.

You don’t look sick. You dress up to walk to the mailbox if you must or to go grocery shopping at midnight to avoid germs and sneezing kids who can unwittingly give you pneumonia. Variably painful constapation with dangerously impacted intestines from time to time can send us to the hospital.

Constipation alone is responsible for 92,000 hospitalizations per year. (https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hospital-medicine/obstipation-constipation/) So imagine sitting in a very uncomfortable hospital sleeping contraption (the word “bed” seems too generous for the intended result, sleep), getting a jarring, “is it okay if I check your vitals,” at 3 a.m., and a roommate with a privacy curtain separating you from her and the entire extended family. One small kind of weird bathroom with a toilet and a shower stall with the water pressure of summer sun shower and about the same humidity. Now, poop!

Sure thing. No privacy, exhaustion, constant nuisances like night nurses and Telemundo Spanish language television. Everything annoys you, more so than in real life and add to it incredible boredom and it’s not the recipe for bowel evacuation.

Homeward, unbound.

Monday comes and it’s 10:30 a.m. and still I cannot rise. Having overdone it on the weekend, I pay the price of lost time on Monday. The heights of generalized pain and the burning numbness of neuropathy in my arms and hands keep me from getting going.

I lay in bed reminiscing about the days of actually earning money for working. Benefits beyond a paycheck reveal themselves like the unborn babies I lost in my 30s. I hear morning laughter and I’m reminded of the camaraderie of my office mates asking, “how was your weekend?” There’s no one asking and no one to tell about my Saturday and Sunday. No one to sit and drink a bad cup of coffee with nor to whom I can complain about Monday morning Silicon Valley traffic.

I no longer sit in traffic but in my bed and try to meditate on what I am thankful for not what I no longer can do. It’s still painful to think about all that I miss.

Money, its a bitch.

The financial fallout of terminal cancer for the afflicted causes pain of another sort. Juggling hospital bills, finding copay assistance for my $18,000 per month chemotherapy, and finding a way to spread $2400 per month of social security over 30 days of medications, doctors visits causes all kinds of stress. What Dr. Susan Love calls cancer’s collateral damage.

This cost of care presents such a highly profitable market all along the supply chain that our losses turn up sadly on the positive revenue side of so many spread sheets. Even of those companies with seemingly altruistic founders, doing this for their mom, or sister, or wife, dream of the things they can buy with the dollars they’ll reap. At my expense. At your expense. And that includes the medical marijuana supply chain from the hippie dippy growers to the seedy dispensary owner. No offense to anyone but you’re in it for the money.

So with that I’ll leave you with a clip from the movie “The Jerk,” where Navin figures out how business really works. “It’s a profit deal!”

I’m sharing this clip not only to point out the absolute abandon with which the food chain of big testing machines and cancer pharmaceuticals gain heavy profits. It’s also very funny in some ridiculous business situations. During my career as a business consultant specializing in product and service development, I took a trip to Austin, Texas to visit with a customer.

We stood outside of their offices in the Texas humidity laughing at their audacious requests for deeper discounts and free services. The laughter came from the managing engineer who was one of my favorite people to work with. He recalled the aforementioned film clip and we cracked up in mutual knowing of the film. It was so apropos of the ridiculousness of the meeting we’d just left.

That person who brought laughter through difficult times has his own pain to handle at home. I’m pretty sure this difficult client was nothing compared to the difficulty he faces at home. So, here’s to you, Mr. Horgan, for checking in on me and reading my blog, even 15 years after my departure.

Indescribably, Unforgettably, Irreplaceable

There’s no pain like cancer pain like no pain I know.

My Struggling Ugly Days with Metastatic Breast Cancer

Everyone says to me that I don’t look like I have cancer. But I do have cancer. And there are days when I feel like I have all the cancer in the world. Today because of some screwup, I had been out of my pain medication for close to 48 hours. I take opioids daily to function and to have pain relief from the red ants crawling around my ant farm bones, biting my insides where you can’t see me.

I also take opioids to relive my abdominal cramping and pain from a continual battle with ascitic fluid in my abdomen, which I’m having drained again Tuesday morning and was supposed to have labs for today at Good Samaritan hospital, but I couldn’t drive. I couldn’t get to my palliative oncologists appointment either. My plan was 1. appointment and 2. blood draw, 3. then home. However, I came to find myself locked in a week long pharmacy-doctors office-nurse-communication struggle to receive these certain classifications of medication. I hope you never have to know the pain and suffering of metastatic cancer and the withdrawals associated with 48 hours of being out of your opiate based medication.

My beautiful angel friend and neighbor of 10 years had to see me like this today. I had to interrupt her busy day for this errand to get my medication. And she’s a terrific single mom of a terrific kid who I’ve seen grow up into a fine, happy, helpful and wonderful adolescent after 10 years. But to me he’s still the infectious giggling little boy. Only due to her being an awesome mom.

Yet today I know I scared her. I gave her my wallet and called Walgreens and she was visibly nervous. This is an ugly troublesome facet of my disease and a side reserved for my private hell. I do not even let Craig see me this way. Simon, seen here giving his mommy mouth to snout resuscitation, and love and kisses and trying to wake me up to feed him which I must go do, is the only one who sees me like this.

But I’ve decided to share with you the ugly side of metastatic cancer. The painful side. So, based on my no bullshit blog policy, I’m sharing selfies so that next time perhaps you’ll refrain from wanting to say to anyone with metastatic cancer, “you don’t look like you have cancer.”

Are you on drugs, lady? Or, is Walgreens new policy to fill only judgement biased prescriptions?

The Who – The Real Me – Quadrophenia
Love didn’t reign o’er me that day at Walgreens’s drive through window, but a pharmacist predisposed to judge people based solely on a list of prescriptions rained down on me with a very ugly realization.

Context is King
Our perceptions of other people when we lack personal context, especially someone you’ve just met, can be jaded by situational circumstances. To prove my hypothesis, I’d like to try a little experiment in sociological phenomenology (a fictional new branch of anthropology) With no Amazon gift card to intice you, please participate in my no-paper-or-pen-required field test, for the sake of pseudo-science or better yet, to help argue my point using logic and reasoning.

Here goes: read the following list of medications and think about your immediate impressions of a person who uses these every day:
Adderal
Dilauded
Valium
Morphine

Test Your Perceptions
Now hold your prescription perceptions of that person in your mind. What does he or she look like? How do they act and what kind of morals and personal values do they have? Are they capable of illicit or even illegal acts?

Now, here’s another piece of information about this person: they are on Medicare and social security. However, they look too young for such social services and furthermore not very sick at all.

Now hold that image and add this concept in your mind – Is she scamming the system? Lazy? Have you read or watched news stories about drug addicts who buy and sell prescription medications? About criminals stealing from social agencies meant to help the aged, the infirm, and the critically ill? They should be in jail or at least in drug rehab for opioid addiction, right?

So, you have your current picture of this person firmly in your mind based on some pieces of factual information but knowing nothing else about them at all except they are female, about 50-ish, driving a late model Mini Cooper. Now, certainly your perception of her changed based solely on this new information about gender, age, and the car she’s driving. You do not know if it is her car or borrowed. Do you assume it’s her Mini?

Now, I’d like you to add the following medications to the list above and tell me how adding contextual medications for stage four breast cancer to the list changed your perception of her:
Ibrance
Faslodex
Xgeva
Xolodex

Different? Of course. Pain, fatigue, and anxiety all go hand in hand with stage four metastatic breast cancer. What do you perceive of her now without your logical fallacy rendered false by new information providing context that you did not have prior to understanding her medical condition? Completely different I would imagine.

Here Comes the Judge
On this basis, Walgreens pharmacy can kiss my skinny Jewish ass. After receiving a slew of text messages regarding my prescriptions, their readiness for pick up, and questions about why I’m not over there receiving advice from my local Walgreens pharmacist, I head over to the drive through. I’m saved by small favors of a drive through pharmacy down the street especially after an hour long colonic with my intestinal angel, Lisa.

At the Walgreens drive through that day, new staff I’d not seen before had taken over for the former day pharmacy crew, who all knew me by site and didn’t need me to repeat the spelling of my first and last name five times slowky, please. They knew why I’m taking an onerous list of 11 medications prescribed to me monthly for my cancer and chemo side effects as well as my other medical conditions. They did not judge.

A Logical Fallacy
Judgmentally and silently to the outside world, her poorly constructed argument against her own internal monologue, used a logical fallacy. It probably goes something like:
A. All customers who pull up to the drive through pharmacy window are lazy.
B. Users of opioid-based pain medications are all lazy prescription drug addicts.
Ergo
C. If a list of a customer’s medications includes opioids that are not quite due for refill, she is lazy and therefore a drug addict who shoukd be arrested on the spot.

As my list of prescriptions were read aloud over the outside speaker for anyone within earshot, I felt my face get warm and red and not as a result of a hot flash. The pharmacy assistant’s snotty attitude grew as did her pride in redressing me, the criminal. Reading off my medications like a drug crazed wish list, it may as well have been the voice of the prosecuting attorney wrapping up the case as though I were going to be indicted by a grand jury for trafficking in illegal substances. She looked down her nose at me in my Mini, disgusted, and with a shake of her bobble head, her down cast eyes said, “addict.”

She did not bare in mind I’d told her what meds I was there to pick up. None were of the schedule 1 type requiring an act of what’s left of Mein Trump’s cabinet of fools. Talking over me as I tried to explain about the text messages and how I wasn’t expecting any of those medications for another two weeks, I knew there wasn’t a way to get through to her. She allowed her perceptions to paint a preconceived picture of people she’s afraid will get her in trouble with her supervisors or worse, fired. Everyone whose physician prescribed these drugs for immediately fits the profile. Arrest us, please. It’s better then hearing the rants of public lunacy and the angry mob running after us with maltov cocktails flaming proudly in their raised hands.

She argued over my interruption of her tirade and she kept on with her fear driven illogical argument with no response from me or anyone else forthcoming. There was nothing to say except to please get the pharmacist and that I refused to be served by her ever again in the future and that she may want to review the file she’s reading to see that it clearly states I have stage four metastatic breast cancer. How dared she?

Can You See the Real Me?
I slipped from not thinking too much about cancer that day to only thinking about cancer the rest of that day. I thought deeply about this woman judging me based on perceptions without context. I’m learning not to judge people based on what I see, because there is so much I don’t see. So little I know about anyone. So expecting them to notice what I need or my definitions of how they should act is as preposterous as her judge, jury, and executioner style of customer service.

We have an opioid prescription medication epidemic in our country getting worse by the day and leading to deaths by overdose amongst other ugly preventable causes. Does this mean it is impossible for a responsible adult with terminal illness to peacefully pick up her prescriptionsand without fear of embarrassment or harassment? I’ll let you the judge. I’m not impartial.