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

Death and the Paradox of Happiness

Recently reblogged as a follow on to Karin Sieger’s (karinsieger.com) moving and deeply honest discussion to losing a dear friend to metastatic breast cancer, was my post on hope even in times of grieving. Integrative Hope, a post I wrote back in February, touched on losing my best friend to AIDS at the age of 37 and to my father’s death as a result of a large mitochondrial brain tumor in 2013. When faced with the issues surrounding my own terminal illness and my attitude towards death, I noticed that even on such deep and weighty subjects my philosophy emotionally matured. Perhaps the processing of my evolving attitude towards death and dying came to me more quickly having been diagnosed with a currently incurable disease.

I believe this is in no small part how honest I’ve become inwardly with myself in facing the ultimate of uncertainties, what happens when we die?

I’ve had the honor of being by the side of my best friend and my father and my perspectives on death and dying were strengthened by these two life altering experiences. My mourning wasn’t so much a sad experience as it was a humbling one. Oh, I did cry for the loss of each of them in my life and occasionally still do. But I also laugh, smile, and feel lucky to have had them in my life for the time they were here. While thinking of them now during specific times of the year, hearing songs we shared a love for, or that especially reminds me of either of them, the scents and tastes of favorite foods or restaurants, or an experience in places we’ve visited together. Immediately, dear memories bring them both rushing back to my side as though they’d never died. They’re integrated into my soul in so many ways.

Time also heals and bends our perspectives. The mind protects itself by recalling happy experiences over sad ones. I think of my divorce to my first husband. It’s not the fights I recall but the great times we had, the places we traveled, and the wonderful ways in which he enriched my life. Divorce is a kind of death, too. As for those who I can no longer contact because I’ve lost them to diseases, my life in a sense extends their own, although neither is still alive. I’m grateful to have all of them integrated as part of what makes me, ‘me.’ I only hope when I die that there will be as positive an experience for the people I love in this life.

Unlike divorce, where we know what happens when a marriage dies, we just don’t know what happens when we die; the great mystery I believe humanizes all of us and is the only thing on which everyone can universally agree. No one can buy this knowledge either: what happens to all that energy we create while we are alive after our physical bodies have ceased living?

The paradox of happiness

I do believe this philosophical issue makes me more resilient in my own terminal illness and helps me survive with my disease: I’m not carrying any fear of dying. I focus instead on living. For instance, I’ve found peace and happiness where we recently moved and these feelings drive me to want to stay alive. The photo attached to this post is the view in our new home and where I will write my blogs and start writing my book. I want to live longer to see what a true state of happiness feels like. It frightens me to think it may change my philosophy of the dying process.

Therein lies the paradox. I’m grappling with this existential question now and some days it makes me quite angry and sad, which to me is counter intuitive. But that’s okay. It’s all a learning process. I suppose that’s one of the many beliefs as to why we are alive in the first place.

Well must attend to the rolling blackout here in California where the electric utility has determined its bankruptcy allows them to endanger people who need electricity to run medical devices or have air filters or heat on. Fortunately once we move to our new house we will have a generator that switches on and we are converting to solar in the next 3-6 months so as not to rely on such a horrible service. In fact it’s so costly some families have lost their homes or even their children to social services as a result of not being financially able to pay for their over expensive power bills. You legally must have power on to live inside. But bills can exceed $2000 a month and not for mansions, either.

Such a morbidly sad and strange time to live in. Yet all the same it’s still wondrous to wake up every morning with the opportunity to be grateful for another day.

Even if the powers gone out.

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.

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.”