A random walk in my mind or the few moments in the mind of the living dead

A day in my inner life includes a hell of a lot of scary stuff. But I’m NOT scared. Well a little. Maybe. Hey, cut me some slack! This is deadly death causing cancer stuff for goddess’s sakes.

How do you feel about the whole question of death?

I’m personally not scared of the concept (read a few of my prior posts on death and dying) After drawing one afternoon and quieting my mind, my amygdala decoded during some of my resting brain activity during which my approximately 10 to the 4 synapses per neuron and 10 to the 11 neurons in my human brain aren’t doing all too much (sure!). Possibly it’s out of a condition I’ve applied to myself – I could already be a ghost! Holy shit! I ghosted myself.

Proving only this to only me: I’m afraid of leaving people to feel sad that I’m gone. Feeling my loss. In some ways they’ve already begun to feel my loss either by purposely losing me or by sending themselves away from me.

What I try not to do is imagine really stupid post mortem self images like me as a ghost. Sometimes I’m watching helplessly as my living beloved attempts to feed himself, which really frightens me for all really stupid reasons, like: God, can he remember how to even put the spoon in the right orifice? Get the fried rice out of your ears! Put the knife down and use the fork to put the egg in your mouth not your nose! Don’t even ask what he’ll do with a straw and a smoothie. Big conceit to show how silly these thinky things really are because the dead are having fun at Coney Island on a big rickety wooden roller coaster. With the Holy Ghost.

Just Who’s He anyway? I think the HG also God, just like the Son is God and the Father is the Big Kahuna God father of Christ. Right? But I’m Jewish so I am not sure if I’ve totally got it. I studied hard in my Philosophy courses in college. So correct me because I hadn’t thought to ask that question ever…

Except…

When listening to Bye Bye Miss American Pie by Don McClean. But I’ll leave this twisted line of thinking with a sorbet of one of my dad’s favorite songs. By Don McClean. Vincent (Starry Starry Night). Still it makes me cry like a big kid missing her dad. And I do think about him too.

Dead and gone, but not forgotten.

I worry about who will take down my online life or does it just linger like a ghost in the machine?

They aren’t worried about us here killing the planet, the people, and all the great ideas to fend off doing the first two things by capital crazed thugs.

I think a lot about the data on the net and how little our friends in oncology get out of it.

Of interest is how to help providers mine our data so it’s a two way conversation and they benefiting as well from social media. The money to drive these efforts likely needs to come from the provider side to develop the platforms to deliver usable, useful information to those who benefit most. I’m not sure how much I’m comfortable with insurers and pharmaceuticals involved in the discussion, but it is public information once we post our questions, opinions, and so on.

There’s really no way to stop anyone from sucking up our information anywhere but to closed groups like you mention on Facebook. And even then I question the privacy of such discussions given Facebook’s track record with in privacy matters.

I believe we benefit and our doctors and nurses and institutions can greatly improve our healthcare if our voices become part of the quilt that is the cancer care industry. My oncologist had me review with him the social media landscape as he’s involved with small study on this matter and I wasn’t surprised to see his lack of initial understanding. Now he knows who’s who in our world and even knew who I was referring to about two months back when I said I was feeling sad and a little bit of my own mortality because a voice had died of someone I respected and who I knew only through her tweets. He even knew that her husband had made her last post for her. Its way too granular but still impressive nonetheless that he’d come so far in a short amount of time. He certainly now knows a lot more about my psychosocial challenges!

I think about other bloggers who I care a lot about.

Tonight I read about Abigail’s second week on a new chemo that caused her blood sugar to rise like a getaway kite.

Blood sugar without the benefit of the sugar? So much b.s. so little time (double entendre intentional). We metsers unfortunately are the real control group of human trials of insane poisons that aren’t going to save our lives but extend them.

I was hoping she had the benefit I do of Palliative oncology. I have come to realize in one of my thinky thought sessions that they are the janitorial staff of metastatic care – perhaps one reason my pals seem to all leave very quickly (that and they all seem really over booked.)

I know that not all of them are the best. Just like oncologists: there’s great, good, and run far away! With so many opinions, like assholes everyone’s got one, and so many drugs to drag our slouching bodies towards Bethlehem, there’s so many bloody unknown causes of so many side effects. But at least I’ve had the benefit of the palliative teams.

I’ve seen in 4 years and 5 months of which I’ve seen as many palliative oncologists as years – to help me handle the fallout, or as Dr.Susan Love calls: the collateral damage, of metastatic disease. Big sky sized crater making fire ball sizzling meteor like problems including our family matters and psychosocial challenges. The good ones listen and help navigate the gaps between oncology visits.

No we metsers are very resilient people. We have to be. We’re not superhuman although it’s great to give our good hope to others to make their problems seem small comparatively.

I hope you enjoyed my struggles for my sanity. As a man I just met tonight as I checked into his Inn in Auburn with my beloved, he asked the most direct question I’ve been asked since diagnosis by anyone.

Mr. Inn,”How do you DO it?”

Me: “What’s that?”

Mr. Inn, “How do you stay sane?”

“I have to. I just do.”

Maybe I’m Amazed (you’re still alive)

Borrowed time:
(To)live on borrowed time
to continue living after a point at which you might easily have died:
Since his cancer was diagnosed, he feels as if he’s living on borrowed time.
to continue to exist longer than expected:
It is unlikely that serious decisions will be made by a CEO living on borrowed time.

Definition of “borrowed time” Cambridge Dictionary Online

The value of living on borrowed time bears an interest rate that’s unpredictable and unpayable. Apparently last December, my body had an amount of cancer physically insurmountable by standard oncological metrics. My disease probably should have killed me by now. How do I find a find a way to absorb such potentially life altering information? I’m unsure how to feel about it, since my recent scans showed that 26 weeks of Taxol had gotten rid of my tumors, and my bones revealed not cancer but the mesh-like scars of healing?

Since last week a cloud of oxymoronic amazement and fear hung low and put a bit of a fog over my generally happy convivial personality. Introspectively and quietly I digested the news my doctor delivered on July 1st. He didn’t expect me to make it to sit in his exam room through much of this year.

As I quickly scanned my mind for clues to his unrealized prognosis, I could only recall a few subtle cues. He became more empathetic generally and more concerned with my stressors at home. He’d say “bless you, Ilene, you’re a very strong woman.” He’d force smiles sometimes. I thought he’d been overwork and just tired.

This week a very competent nurse practioner took my vitals and we discussed my health in general, my increased neuropathy, my overall issues with pain from fulvestrant, and how I’m tolerating Ibrance and fulvestrant combined treatment. If you’re not familiar with Ibrance, it’s a targeted therapy used to treat metastatic breast cancer in patients who are hormone receptor positive by going after CDK 4/6 receptors that basically stimulate the growth of malignant cells especially in metastatic breast cancer. In studies the drugs that are chemotherapy, although taken in a pill form at home has shown an extension of time without new cancer growth and a halt of current cancer growths by about two years. In metastatic terms we like two year life extensions.

However the drug still costs $18,000 per month. I lost my Ibrance after the second dose spilling 26 capsules down the toilet. Yet here I am alive and with my disease stable and poof like that once again Ibrance gone. I cried from frustration and worried for my life again. But the nurse practitioner put my mind at rest and called Stanford’s pharmacy where I am now getting my at home bottles of chemotherapy from, and they procured a full emergency prescription through my new Medicare part D insurance company Blue Shield. Now, all is right in the world and with little stress on my end. The very thought of an agency going to bat on my behalf gives me hope that there are people who understand that stress kills cancer patients by infusing the body with cortisol, a cancer cell’s favorite desert. Now I am back on the medication. Borrowed time indeed.

PET Me.

During the same visit my oncologist came in to see me. He revealed that he didn’t think I’d make it through March of this year. He said, ”keep continuing to amaze me.” I, his miracle kid, amazed him? The clues of his grave and real concerns about my mortality started before the commencement of my appointments. He projected and telegraphed this through his change in facial expression, with the bounce in his step and via the quickness of his pace when entering the exam room. He looked at me quizzically and it seemed to me quixotically in the fanciful way one might peer into a lions den and hope the big cats weren’t hungry.

Prior to May’s PET and June’s CT scans he quietly would sneak up on me with his lips pursed and brow furrowed. “How we doin’, ” he asked with hesitation. ”Great!” I’d exclaim. And given the circumstances it was true. My white blood cells and liver function both responded by remaining stable even with Taxol for 26 straight weeks.

Yet there’s another twist to my life extension and projected expectancy. If you’ve read my earlier posts from December of 2018 regarding my hospitalization it was due to a complete clusterfuck by the Medicare part D insurer Silverscript, Pfizer, a nurse practitioner at Stanford Cancer Center, and the problem of the drug costing so much money that no one without insurance except the hyper rich can afford it.

It was due to a fax that the Stanford nurse practitioner never sent to Pfizer for a three month hardship supply because my insurance was dropped by Silverscript and the CVS Specialty pharmacy (both owned by CVS talk about the Fox guarding the henhouse!). I went four months without treatment and landed in the hospital for over a week until I went poop. And as all of you who have cancer of any kind know, your digestion is of utmost importance to your oncology team! Pass gas and you’ll pass the get out of the hospital test. Passing bowel movements is even better.

Good Times, Bed Times

Today was a bed day. Never got up once. I did bathe and fell asleep in the tub, but I needed to rest my body in the transition from one poison to another and from the psychological internal melodrama of finding out I should be dead. I’m glad to be here writing this post at the four year and four month time stamp since diagnosis. I’m pushing hard for year number five, and here’s three things I’ve learned through this waking nightmare called metastatic cancer:

  1. Meditate. The mind truly is connected to the body and I know along with everything else I do this is mission critical as much as keeping stress to a minimum.

  2. Cancer is about money and metastatic cancer patients are loose slot machines that pay out consistently like the ones near the entrance to a Vegas casino to lure people inside. Follow the money if you need something like medication.

  3. Trust your instincts and listen to your body. For instance right now I know my ascites is acting up and I’m going to push for a draining periocentesis since sleeping morning to morning is one way my body tells me to get a move on with the procedure.

And until my next post, be well, have fun, and follow your heart. Sometimes following only your head can send you down the wrong path even with the right logic. If there’s no path in to put your left foot on, just feel free and your right foot will land on a cobblestone and off you’ll go in a new direction.

💜

Euphonious Cancer

Tonight about 7:00 after chemo, I fell asleep leaning back in the driver’s seat of my Mini in the car park adjacent to Stanford South Bay Cancer Center. A deep, unpredicted snooze just after my second to last Taxol infusion. * Apparently, I’m deathly allergic to yucca, the tree Taxol is extracted from, and I stopped breathing during my first full strength dos back in January. As a result of this not breathing nonsense, my oncologist’s orders now include 50 mg. of IV Benadryl through the three pronged port in my right chest wall.

Then comes a hard, dreamless nap. Sitting snoozing the clay gray recliner, tucked under a nice clean warmed blanket, a soft gentle breeze of the air conditioner woos me toward unconsciousness. 30 minutes later, the nurse wakes me to ask if I will, “recognize my name and date of birth by reading the print on the bag,” which I slur aloud for her to decipher and back to lala land I go.

Waking to the sharp beep beep beep of the monitor letting everyone in the four story building know I’m done, a nurse I’ve never seen before rushes over startling me. She asks if I’m okay to drive. Then she begins the process of unhooking my port and rushing me out of the center. I can hear the always annoyed charge nurse asking her, “is she still here?” “YES!,” I answer for her. Jeeze. Even five boxes of gourmet brownies and blondes weren’t enough to make my twin final infusions more pleasant. No brownies for you, lady!

In the car park, where my second nap took place, sometime between 7 and 8:15 as I slept, my neighbor texted to warn me, after I’d visited last night with her and her teenaged son, that there’s a very very bad flu infection that her son caught and that I should stay home and out of public for a while. A week she advised. Her son had a 101.8 degree fever and projectile vomiting, so as they waited at urgent care with other flu sufferers, she texted me. Her tone was somewhat panicked; likely he was contagious the night before seated a foot from the television with headsets on playing a first person shooter online video game. I sat with mom about five feet away yapping for about an hour begging her two dogs to stop jumping on me and scratching the shit out of my legs.**

I arrive home about 8:45 starving but sit down to write a poem, sandwich instead of a proper dinner in hand. I’m immediately happy with the result, inspired by a post on Robin McGee’s blog, the book eponymously named for it, The Cancer Olympics, she includes a song with each post to evoke a mood or her feelings or to create a more upbeat environment. The post is a goodie and so is her book. Recovery, Homecoming, and Gordon Lightfoot’s Your Love’s Return”

This life with cancer, with it’s forced retirement, compromised immune system from the treatments, fatigue, pain, and a life full of unknowns and mysteries, stress and anxieties, I still have hope. A wonderful writer and psychological counselor, Karin Sieger ‘s blog includes a post from a request to submit favorite inspirational poems and I submitted three. Read her inspiring quotes from cancer survivors and thrivers here .

This is for you Robin and for you Karin, for enriching my metastatic and making it a little more livable.

Euphonious Cancer

Invading my body with water
Washing my mind with a drink
Cancer infuses by rushing to slaughter
Every cell, every organ, everything.
My dreams rust and squeak as I walk
In a dream impossible and unknown

By erasing misbegotten memories
Ugly faces of the impossible and unknown
Whose lifeless bodies lie dead in an armory
Too heavy for the metal, I’m warned.

Sickness steals sleep under conditions
Of cancer, impossible and unknown,
Squatting inside cells without permission
Living on the land of the corpse I called Home.

A map I drew of places impossible and unknown
Lines and roads point directions to one light towns
Etched by the hand of a writer in stone
Furiously chiseled before the words “we found…”

Passing by shores waves slap and erase
My memories of flights touching down
Furiously scrawling recalling the places
Using hands, now impossible and unknown.
Using hands, now impossible and unknow.

*As I sat writing this post, I find a new spell checker auto correct update forgot to learn the name of my treatment, now changing “taxol” to “taco.” Who wouldn’t rather eat tacos then get chemo infusion of a derived therapy from the bark of the yucca tree.

**Why do people feel the need to defend a pet thats untrained and causing some damage to a houseguest? How about it takes me 2-4 weeks to be rid of the blood blisters caused by those nails.

PET Scans and Other Acronyms

This poem, though inspired by some disease that requires I become prostrate to the big grayish pallor of the gaping mouths of machines, represents otherwise the first of several metastatic nods to national poetry month. And, understandably very much inspired by my own internal struggles: doubts in the treatments, one that causes chemo brain, causes degradation of my body, causes me to want to seek out other therapies.

Friday makes a bad choice for any kind of diagnostic test when you’re held down by a terminal disease by the hands and feet. Like the iconic Gulliver’s Travels mind’s eye view of the giant captured on the island of little people, tied down with stakes and rope. His captors run around laughing and taunting their flannel clad prize man, kicking at the sand and pushing his chest against the ropes.

Our scan du jour, a PET Scan with radioactive contrast markers. My results, if I’m unlucky and Dr. B doesn’t get them over the weekend and send an email so I needn’t stress, will be delivered Monday at my 4:30 during oncologist appointment. Standing up for what’s only right to not have weekends for a three-month stint, my dues were paid in full and in advance. I wanted lunches and chair massages and the occasional pedicure! Weekend people get graham crackers and little kid size boxes of apple juice from concentrate. Yuck. Sugar for my pretty, bad your little cat too!?!

After my new improved appointment schedule of Monday’s around 1:00 pm for labs and onto a sit under the drip into my port whilst under the spell of Benadryl, Pepcid, and steroids. I awaken usually not feeling like I slept but merely dreamed instead that I slept. Last weekend the male nurses cheered loudly for their March madness team and the others had been called into a staff meeting. The nurse, the most competent thus far, who put my chemo in my port was not the nurse I woke up joking to, and she said nothing. I’m beginning to feel like an imposition to the lifestyle of many of these people degreed in caregiving.

God knows if my oncologist finds out I was left unattended, I think he may become annoyed and even angry. He’d come to the infusion center like a parent checking in on a child in daycare and found I’d not been given the hours 1:1 nurse coverage since I stopped breathing during the initial Taxol drip at my first appointment. He saw me alone and he could have had this nurse by the nape of the neck the way she tilted her head lightly forward as he walked behind her, the silence of the others palpable. She sat down and he said he wanted me covered specifically and no excuse. She sat for a pitiful 15 minutes, handed me the call button and motioned to press it.

I called after her to say, umm, hello? My name is Ilene not “you” or nothing at all, and you or someone in your position to resuscitate me should this no breathing thing recur should be here not not here. She said she could see me from the desk. And walked away. No one ever did come to insure my respiration continued, not for the last 14 treatments. I’m all weeks on. No weeks off, until May 28th. Then I’m free for a while of the infusion center. I’ll ring a hollow sounding bell. It won’t be the end of treatment. Just the end of this egregious protocol (that’s treatment in cancer speak). The side effects cumulatively build up as my eyebrows, underarm hair, and nasal cilia aren’t getting better. Worse. My exhaustion, my word loss, my general malaise grows day after day, week over week. And still I rise. It hurts some days more than others but I rise.

Now, for something completely different, the poem…

A Scanner, Brightly

Meditating, my elbows inside
Blood draining into my radiant body
Port standing brightly waiting
For an access pass
Checking for sugar upon my lips.
The remaining life of uranium
Available and waiting
Not like on an atoll in the pacific
Yet like in those black and white films
Cringing they watched the blowback
And wonder how the film survived the war.
Then the subtle kindness of
A starched white pillowcase
Holding me like a potato sack.
My arms akimbo to my ears
Sliding in and out of an expensive
Engagement rig dignified enough
I married this disease for life.
And what mystery you present
As you wash over my half-life body
I cannot read your name in the darkness
Behind my eyes I’m sure the stars still
Shine, face down I know the sun still
Rises. But what did it stand for?
P.E.T. me again I don’t recall:

Patience, energy, time
Pain, emptiness, taxing
Pathway, eating, through
Palliative, end of life, treadmill
Parasite, entangled, tornado
Patiently, earmarking, trade offs
Powerful, everyday, trying
Practicing, Eastern, traditions
Potential, ego, transmitter
People, envying, tools
Precious, errant, traits
Prevent, except, today
Perhaps, everyone, took off
Persons, except, those
Souls concerned about no one.