A Fair Question

Whether or not you’re one of two people with a cancer diagnosis or one of the 40% of that 50% whose deadly prognosis of a metastatic cancer came down like Maxwells Silver Hammer, please ask yourself one simple question. It’s fair for me to ask you to ponder this for five seconds or five decades, if youre an insightful type.

It’s also a circumstantial question with many dependencies such as family, whether or not you’re a parent, religiosity, cultural upbringing, current socioeconomic and financial positions, physical and mental health, risk aversion, spontaneous adventurer or ardent planner, shopoholic lover of material belongings, artist, creative type, traveler or homebody, number of dependents, caregiver, planning capability…well you get my point.Forget all that and give yourself a green field and ask yourself this: if you found out you had a terminal illness today and you had no real idea of when you might die but you’re going to die sooner than later given there’s currently no cure for your disease what would you change about your life as it exists today?

Would you change anything at all? Would you leave your spouse your family your children? Would you travel the world? Would you quit your job? Could you quit your job? Do you have enough money to just take off and leave to follow that lifelong dream? Do you have what’s known as a bucket list, or as I like to call it a kick the bucket list, that you’d like to check off? What would you do? For the most part I bet you won’t or cab’t change very much. “I like to change a lot,” you might think. But alas as in most situations not much can or will change. That’s because your life as it exists now is your life as it existed before you were given your prognosis of death.

A Bifurcated Mind

What metastatic cancer has taught me is that there are two worlds that exist: the one that you had before your diagnosis and the one that you had after your prognosis. Chances are you’ll have quite some time to think about this question, which may keep you up any number of nights a week. You might suffer from insomnia, wondering if you’re doing the right thing or if you’re doing the right thing by the people that you love. Perhaps you don’t think anyone loves you much at all. The fact is they probably do but maybe you have low self-esteem and you just don’t feel it. Perhaps you hate your job and you want to quit. This might be a good time to quit actually. Leaving my career, which I didn’t necessarily want to, turned out to be a rather good thing for me.

I found out that I had an artistic side and I followed it. I also followed my hunch that there was a lot of waste going on in the world and that for my own special purposes I would sell things that were not made from new materials because they’d be all antique or vintage. I feel pretty good about that. But not much else in my life changed.

Except everything.

So ask yourself this question what if anything if you were given a diagnosis of metastatic cancer and a prognosis that you would die in the next two months to two years to 20 years: what would you do differently with your life? I leave you with this question on the last day of the year. Perhaps you can write your New Year’s resolutions for 2020 with it. 2020 vision is considered a great form of hindsight isn’t it?

And yet have you thought about what you might do for the next two years or 20 years if you have them? I can tell you this much, I certainly don’t do any New Year’s resolutions anymore. In fact last year I wasn’t supposed to live past February but here I am so…

Ask yourself this question what would you change about your life today even if you weren’t given a prognosis of death in the shorter term than you thought you had. If you can change some things maybe you should ask yourself what those things should be? Then if you were given a prognosis such as I have, you wouldn’t have to ask yourself this question night after night day after day questioning the people around you looking at them as though maybe they were your enemy or maybe they were not. I’m not sure sometimes but I will say this I do have some things in my life that I wouldn’t give up for anything.

I might change small things, huge things, things that might make a difference for other people or things that might just make a difference for me. I guarantee it’s a combination of a whole bunch of things but you’ll have to think long and hard about it. Give the question justice because it’s your life.

So, you’ve been diagnosed with a terminal illness and you must ask yourself the following question: what would you do differently in your life or change about your life so if any given week might be your last you’d be happy with it or at the very least okay with that week?

“That’s not a fair question.”

My husband reacted with a sense of injustice, but I don’t agree in its fairness. Just as there’s no stupid questions…No, every day isn’t a great day…that much is true.

However, built upon the foundation of modern western culture insure to that, due to no fault of our own, all of us were born into a time of rampant materialism. Noting we buy delivers on its promise of satisfaction. There’s the cliché small print that spells out a guarantee of no satisfaction. What it does guarantee: you’ll never see any money back should anything go awry. A broken warranty means by simply using a product said guarantee is null and void. A manufacturer’s guarantee is akin to cancer in some ways.

By living in our bodies with the environment at a time of great threat to its own mere existence, we are swimming in chemicals and stress and we’ve not evolved to handle it nor should we.The point I’m trying to get across is that by merely living in a physical body we are very highly susceptible to illness and specifically cancer. The warranty on our physical body while living in the post industrial, sedentary, sugar infused world with melting ice caps and chemicals in our air, water, and food there’s no guarantee of any kind. Now, keeping that in mind, ask yourself what would you do differently if anything given your own personal special circumstances even if you’re not hiding “a cancer” if you were to be diagnosed with a terminal illness?

By the way, I deplore that phrase – the article in front of cancer removes it from our body’s boundaries giving it a life of its own of sorts.

Regardless of all this philosophical pondering just be happy. The year 2020 is my year of hindsight, to help me find the foresight, to live in this moment in a way that’s just right for me.

Stay Tuned…

You’ll find my answer to this question in: A Fair Question Part II.

My heart and my soul go into this blog and these words and to the people who read it I thank you and I hope you continue to do so. I hope you leave a few more comments in the next year. I love your feedback. I really like hearing from you so I can feel as though I am not writing a little vanity blog. It’s healthy to receive both criticism and accolades. Your interactions let me know writing on the cancer bus isn’t for nought. By the way I consider you my friends and my extended family so here’s a big hug.I mean, for fuck’s sake, if you read this you know some of the most personally intimate things about me. So I trust you’ll ask yourselves this question and put some time into answerinng it. I guarantee if you’re not metastaticly inclined, you’ll have a much better idea of what it’s like to have a death sentence. Most of us can’t do much but focus on remaining alive, keeping a few people around us who care, keeping our lights on and some gas in the car.

If we are lucky.

All my love,

Ilene

And then there’s my cancer…

We never know how high we are
Until we are asked to rise
And then if we are true to form
Our statures touch the skies

  • Emily Dickinson from poem 1176

Happiness: an illusive inner state to those of us with terminal illnesses. Each happy moment rolls into the next, yet we drive through life on a road with potholes and speed bumps as a reminder that we better slow down and enjoy it while we have this chance. To be sure, each and every waking morning opens the curtains on a new chance to grab at the brass ring, that for us is coveted yet covered in Vaseline. The ring slips from our hand as we ride by. The horse we ride runs free with us on its back, hand filled with the shadow of oil from our attempt at forgetting for a single day that this might very well be our last.

As finding our dream house should make for a feeling of joy at the real chance of building a fantasy foundation for our new beginning, I still well up with tears when I’m alone. Amazingly we have experienced much joy, having moved from the angry, traffic snarled, polluted San Jose to the clean, kind, and friendly cradle of the Sierra mountain foothills. Put that together with finding a home to put down roots permanently and you’d think – what does she have to complain about? Believe me, I’m not complaining one iota. It’s simply that the bittersweetness of biting into such a red delicious apple knowing it’s laced with poison that will kill me sooner, or I hope, later, covers my heart with a dark vail of sadness. I may not be here to enjoy the fruits of the seeds we planted and have cared for such a long time now.

We tended to our garden most recently with the difficulty of the move itself and over many years seeing my beloved finally pull out of his depression. So much to look forward to, so much love in this very moment in time to be grateful for.

Then there’s my cancer.

Making plans to switch oncology teams, making sure we’re in as clean of a house with the very best infrastructure in which we can invest – things like low to no VOC paints and bamboo wood floors – we’ve found an opportunity to live by the anti-cancer book. Complete with new friendships and a very cancer-supportive community this is certainly what appears as one of the four noble truths: nirvana. I’m finding a certain lack of suffering here. To me, who’s always lived by the old cliche the grass is always greener and finding some level of happiness wherever I am, this time of my life comes as something of a surprise to me.

And then there’s my cancer.

I’m reaching out for an exacting of equanimity here. A balance of sadness and happiness. Where suffering becomes the background or the shadow and joy comes forward to the forefront and into the light. It’s so hard. That’s all the language I can use to look for a way to achieve balance of taking care of my physical and emotional heath while not focusing on it. I can liken it to taking a photo of a sunset when you’ve got a person standing in front of the camera lens. I can see the colors blazing in the distance but there’s a big dark presence preventing me from taking in all that beauty.

Because there’s the cancer right in the way.

I hide it well. Sometimes my beloved asks if something is wrong or if I’m angry with him. No honey I’m not. I’m happier with our relationship than any other time in our 12+ years together or any romantic relationship I’ve been in my entire life.

It’s just the cancer getting in my way again.

Here’s a poem I wrote a few weeks ago as my weekly blog bonus. I love the theme of it – it’s tangentially akin to the theme of this blog post. On that note here’s:

Cold Love

Would I be if born a snake
Or bee, or clam, or fish?
Leg less, bloodless, and cold blooded
A thing without future or past.
Without arms to hold us
How do they establish a child’s
First love? Without sounds
Without syllables, no words to wound
With no hands to slap cheeks for the tears?
No false devotion to express and
No arms to commit forged emotion.
Did god know we needed belief?
Maybe words and hands on the end of arms
Beat us to the punch?

Whose guilty fingers purge my throat
To say nothing of love’s remorse.
Outstretched, sewn, and quilted
Receiving dubious mistrust
And soiled gifts of healing.
Arms holding light to beseech me
The creatures run back to the wooded wild.
Any path dark and clouded
Covered with leaves compacted
By nights grand mothers who sneak
By and slither away with our soundless cries
Morays silently drift in shallows,
The pecks of grounded wild turkeys,
The opinions of poisonous black widows
All mothers in the dark shadows of sea, of land, and of twine
Wait to hold their young somehow.
They give what’s needed and then take away
Without a word to convey their warnings.
Compliantly we wait at the forest edge
Huddled alone and cold until
Tonight tar black and frightening
Clears away in the dim light of morning.

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.

The Mystery Award – Much Gratitude to Lahla for Recognizing My Blog

What is the Mystery Award?
Wow an award, so unexpected and so cool. I can’t say I’m not happy to receive the award, though it’s a mystery to me that my words have touched someone enough to nominate my blog. Lahla Brain Cancer Freeish, my nomintatrix to you I am grateful for this award and it’s no mystery that I have a mutual respect for your writing, and inasmuch I wanted to show my appreciation by fully answering your questions and so my apologies for taking so long. We are, all of us, blessed to have a platform to speak our hearts and minds. In my case, I focus on my metastatic breast cancer diagnosis and to living life to the best of my ability and to talk about it candidly and with an audience who support my blog.

Quoted from the Mystery Blogger Award’s Creator:
“Mystery Blogger Award” is an award for amazing bloggers with ingenious posts. Their blog not only captivates; it inspires and motivates. They are one of the best out there, and they deserve every recognition they get. This award is also for bloggers who find fun and inspiration in blogging; and they do it with so much love and passion. – Okoto Enigma
Here’s the link to Okoto Enigma’s blog www.okotoenigmasblog.com

Rules:
Put the award logo/image on your blog.
List the rules.
Thank whoever nominated you and provide a link to their blog.
Answer the questions from the blogger who nominated you.
Mention the creator of the award and provide a link as well
Tell your readers 3 things about yourself.
You have to nominate 10 – 20 people
Notify your nominees by commenting on their blog
Ask your nominees any 5 questions of your choice; with one weird or funny question (specify)
Share a link to your best post(s)

THANK YOU THANK YOU VERY VERY MUCH!
She’s an awesome writer and a brave woman. Read her and be prepared to think. Here’s the link:
https://lahla.blog
Lahla you inspire me to continue with my ramblings and to become a better, more relevant blogger to reach out to people who have cancer as well as others who struggle with challenges of different sorts. My expectation of blogging hadn’t included awards by other bloggers who I respect a great deal, such as yourself. If anyone had given me such an honor, you’d absolutely have been one of my selected writers to receive it in response. I’m grateful beyond my words… It’s not just another blog about cancer and its collateral damage.

Three things about me:
1. Once upon a time I was a CEO and Chairperson of a 2,400 person international contact center company with offices in the Philippines, India, and three small towns in the United States headquartered in Miami, Florida.
2. I graduated with honors from University of Florida with a degree in English and a minor in philosophy and I worked my way through school. Since I had my GED and dropped out of high school in the 11th grade, I wasn’t a candidate for admission. And though I had an Associates of Arts degree with honors it wasn’t until I wrote a letter to the Chancellor of Education of the Sunshine State of Florida throwing myself at his mercy and asking for just one semester to prove myself that the day of matriculation for my soon to be junior year, was I accepted. The letter stated I needed to maintain a “C” or better average. I aced all my classes and the rest as they say, is history.
3. I’m a writer. I couldn’t say this sentence until two years ago. I’d thought it egotistical and not applicable until a very wise, warm, and witty man asked me why I didn’t call myself what I am. My writing as a result improved 10x by simple stating a fact. How words do make us believe in ourselves. Now I’m more cognizant about what I say to people and try to bring positivity to my discussions – words can heal bad words can wound. Once something is said, it cannot be unsaid.

Lahla’s five questions:
They’re answered humbly and with the staccato of a shrill, “you like me! You really like me!,” of Sally Fields winning an Oscar award for Steel Magnolias. Should your current youthfulness prevent you from having experienced this rare yet spectator worthy display of gratitude, let me digress for your edification: it’s a moment of true Hollywood humility that seeped into the cultural gestalt of the 1980s. This took place during the era when the bulk of my teenaged, Florida inbred, burgeoning writing career took flight. You may read some of that shrill shrinking daisyesque behavior embellishing my post cancer apocalyptic retelling of my life here on the Cancerbus.

When and why did you start blogging and how does it fit into your life?
Perhaps Lahlah chose my blog and me by way of my blog for this mysterious gift because she found my benign self deprecating humor and my more malignant posts about life with metastatic breast cancer somewhat inspiring and blatantly honest. At least I hope so, and this is why I began blogging. Not to win any awards, but to win the hearts of fellow travelers in cyberspace over and create a place I may go to talk to them one on one. A blog to feel less alone in my predicament and find others who, whether in a similar place in life or who have tastes in poetry and a dark sense of humor like mine. Who likes to talk to themselves ALL the time, anyway?

What kind of things do you do that make you feel good about yourself?
Showing gratitude for small glimmers of hope and pulling out an uncharacteristic spirit-based patience with Craig, my life partner of 12+ years and his four-year depression; writing the past four years of experience with MBC (my new resume) to share with those who may want to peek at my style of illness navigation; holding onto the cat-love of my life when all seems dark and my body hurts the most; and spending time with the friends who have become the rocks on which I stand when my on foundations seem weak and unreliable. It’s not the obvious things like charitable fundraising or making time to generate awareness for metastatic cancer. Those naturally give my heart a fresh pump of blood. But it’s the everyday, the simple slower activities and the gratefulness I feel for having love in my life, that gives my soul it’s nourishment. Also my recent fascination with art journaling as an adjuvant therapy to my poetry and personal essays.

If you could go anywhere in the world OR back in time, where would you go and why?
Four years ago I’d have said 1900 -1930s London, England for the writers and the Victorian sensibilities to meet the Bloomsbury Group writers along with Virginia Stephens Woolf and the rest. But life changes with age and with priorities, so realizing that I’m in a certain time space continuum, and without any assistance from a time traveling mechanism, other than an airplane of course, I’d go to France in the present day. For the je ne saus quoi, the terroir, the art, the TGV trains, the variation in weather, the house owned by Count Lurpak with it’s view of the mountains from the bathtub, the proximity of the south to other places like Barcelona. I’d have moved there if not for meeting Craig 12 years ago. I hope that before I expire I get back to the beloved place for an extended time. In fact if it were the last place I’d visit I’d die happy for it.

What is your favorite food? If it’s special beyond taste, please feel free to share why?
Food is my favorite food – rarely run into anything I won’t eat if offered, although I could live without a few Asian odiferous delicacies. And I cook…anything. My dream if I live so long: make each recipe in Julia Child’s the Art of French Cooking. I’ve created feasts of roughly 1/4 of the well worn, butter splattered tome. So, you may have guessed, I cook. I’ve cooked for as long as I could write, and learned at the side of my grandmother and to some degree my mother. My mom let me take over the kitchen about any time I wanted from the time I turned seven. As long as I cleaned up.

Thanksgiving feasting with turkey, stuffing, gravy, cranberry relish, sweet potatoes, green bean casserole. My Thanksgiving feasts can take place mid summer, the dead of winter, or anytime someone says, “oh, I really crave that turkey you make.”

What inspires you the most in life?
Change inspires. Stagnation kills creativity. So anything that requires change, be it my foibles, my craft, residences, travel, even daylight savings time provides me with enough change to soothe my ADHD and up the ante on my creative side. During my career I changed jobs within and between companies leaving a resume that could challenge even the most experienced of head hunters. My clients inspired me, start ups were my speciality. Now, my life is a start up and every new day brings changes to my body, mind, and soul. Since my diagnosis (talk about change) simply upon waking to see each new day unfold, I am inspired.

Nominees!
Finally, my no my knees, in no order of significance…with a few people you may not have had the treat of getting to know through their writing:
1. Leon’s Existential Cafe http://existentialcafe.blog/
2. Xena’s We Hold These Truths… http://Blackbutterfly7.wordpress.com/
3. A Guy Called Bloke and K9 Kadoodlepip AGuyCalledBloke.blog
4. Sara in Lala Land http://sarainlalaland.wordpress.com/
5. Thanks Cancer – and their podcast, too -http:// thankscancer.com/
6. Unbreakable Queen’s Lifelessons Diary http://Unbreakableyetfragile.com/
7. Breast Cancer Conscript -http://breastcancerconscript.wordpress.com/
8. Molly Kochan – http://everythingleadstothis.com/
9. Nancy Stordahl – http://nancyspoint.com/about/
10. Brian Lageose – https://brianlageose.blog (I forgive you. 😜)
11. Julia Barnickle – http://juliabarnickle.com

My questions:
1. Write a haiku about being nominated for a blogger award and title the haiku with the cartoon character with whom you most relate.
2. What’s your superpower and how do you use it for good not evil?
3. Do you believe in a spiritual world or some kind of afterlife? If yes describe, if not why do you believe this is all there ? ( not just a one word “no” answer for the atheists nominees.)
4. What’s the best place in the world you’ve ever been and why should anyone go there? Convince me. Plane tickets are a good way to convince me. (Joke. The last part.)
5. What are the top 10 songs that make you feel good when you’re down, or inspire you, or you just love to listen to anytime or all the time.

Links to my best posts:
My last two posts I’m very pleased with as my writing matures and I focus less on bitching about cancer and more about looking outwards. I also am proud of my poetry but I’ll let you decide if you want to read it, as I know poems aren’t everyone’s cup o’ noodles.

Dense: Very Stupid Breasts Outsmart Early Detection

Integrative Hope: the prison of a diseased body