Days of Futures Past

Would what I know today have helped me in the past? Circumstances change with every decision and what and who play roles in our lives constantly shift like sand on a beach. The ocean’s tides ever flow, but never continually the same so the charts must change with them and the shifting of the depths we cannot see beneath us. So anxious minds consider, “if only I’d known then what I know now,” beating themselves up with the knowledge they never could have known before that very moment. Experience and wisdom helps our insight, but focusing on the moment helps us get to the shore, while not looking back at the vastness and the waves behind us can make us run ashore instead of landing in the safety of the port of call ahead.

People change, as their roles in our lives do – and they perhaps hadn’t even shown up yet as we sail into this moment. Knowledge of the past certainly builds a foundation failures and corrections, of perfecting a skill or building a long term relationship. Adding all those trials and errors leads to our successes. But somehow we get older. Hopefully wiser and things become easier. Right?

There’s knowledge that’s unfashionable to a younger, unexperienced mind. Yet how I sometimes wish I retained less of the knowledge I’ve amassed. The German Erfahrung, translates to the English word experience yet the German definition connotes more closely to my point. Erfahrung equates to the coherency of one’s life’s experiences. And that’s the subtly of why what we know now never could help our past selves.

Our egos sometimes overshadow our vision making it difficult to see that we, as the coherence of the past, culminate into the current moment. Can you know more than you know? But how do you infer a decision from the past without the culmination of experience?

I try to follow the old rule “fool me once shame on you. Fool me twice shame on me.” But there’s not a one of us who can honestly say we’ve not gone back for more foolishness given instances of grief, love, passion, obsession, and even hope. It’s the science. We rely on evidence based knowledge to go back for more chemotherapy. Yet as far as I know there are no instances of chemotherapy curing cancer, though we’ve experienced successes using western medicine.

It’s not foolishness but hope that drives us to swallow the pills, sit through long infusion sessions of poison, and lasered with radioactive beams of light. How can we hope to recover with the help of the very things that contribute to cancer? We certainly know more today than we knew yesterday, but back for more we go.

All we are is all we are.

We’re all we are, but not all we have been. Change is never a straight m path. It’s not a tightrope with a net beneath to catch our fall when we make mistakes and lose our balance. The paths we walk, crooked and curved, and look more like mazes than labyrinths, since we have an end to the process in mind not just a question we ask as we walk around the crooked and curved lines, none contain us or forced us go make a decision in order to exit.

We skip over cobblestones in the roads. We change course. Our bodies don’t even remain the same as our physical selves aren’t even the same as they were a millisecond ago. And that’s physical age taking us over. Everyone is born terminal. If the doctor slapped a newborn’s bottom to make sure they’re able to scream and thus breath, the first words we should have heard were, “I’m sorry but you have a terminal case of stage four life and you’re going to die from it”. We don’t have a prognosis on your actual mortality but have hope. Medicine has come a long way and life expectancy has reached 77 years in the US and over 80 in European and Asian countries. If your children were born recently they’ll be expected to live over 83 years. When I was born in 1965, the average age of mortality was 74.

It’s unlikely I’ll reach 74. Metastatic cancer shaves years off of the long life my parents expected me to have – both of them thought I’d live into my 90s for some reason. I’m a mortal disappointment.

Roll the dice and be nice.

Take good care of your soul and your spirit. Whether or not it’s true that heaven and God exist, kindness and giving others love won’t make life here and now any worse. Actually, I can only make living here better. What really do you have to lose by navigating this life with a well tuned moral compass to help guide the way?

One thing I have learned is that saying I’m sorry even if I don’t feel that I am at fault and the argument isnt “my fault” I apologize. Yet it has to be a real apology not one that feels false or feels forced. Sometimes you have just say I’m sorry. Because tomorrow morning it’s not who said they were sorry, but that the burden of stress is over. Chances are you won’t even remember what the argument was about. Because let’s face it it wasn’t about what you said, it was about what you didn’t say. But you’ll be happy for for the hug that you’ll feel for the kiss on the cheek for the I love you that you’ll hear. That is an easy thing to do. It’s the ego that gets in the way and if you’re taking care of your spirit and your soul the ego takes a backseat.

It’s the ego that gets in the way of the possibilities of genuine apology. Yet if you’re taking care of your spirit and your soul the ego can take a backseat. We can let the ego grow, like ivy growing over the bricks of a university building. It might look good, yet it covers what’s hiding underneath.

Your soul and your spirit are the most valuable and precious things you’re responsible for. And if indeed there is “heaven” and “God,” and you don’t believe in a specific doctrine or prayer book or religion, still what do you have to lose by doing good? Taking spiritual care of yourself is as important as taking physical and mental care of yourself. It helps you treat other people the way you like to be treated.

I do believe in the old aphorism of treating others how you’d like to be treated. How many of us really practice that? Look at the arguments that you have look at the things that you don’t say that you really want to say and then tell me that you do treat other people the way that you want to be treated. Don’t you want to really know what somebody feels have somebody wants to be treated? Perhaps it’s not what’s being said, but that feeling in your gut that you should listen to instead.

Laying down your sword and holding out your arms instead to hold someone makes life easier. And I do believe that life is meant to be easy. It’s certainly easier taking care of yourself and allowing that self-care to show and shine for other people in the form of a genuine heart. The better you take care you take care of yourself, the better you can take care of other people. Practicing that can give you a happier life right here and right now. Practicing self-care and self-love helps the way I care for others to improve.

Where in lies the difficulty?

We struggle when we want more than simply life itself. We cannot control others. If indeed life weren’t meant to be easy then life itself would make no sense at all. It is simple and it is easy. In summary I want to give you for things that I’ve been thinking about that had me write this post which seems probably very philosophical to you. I haven’t written a post for a few weeks because I’ve been thinking quite a bit in this downtime, in this alone time, and tried to treat this isolation is not so much lonely but is the time to do some self discovery. I hope that you’ll get a little bit from the soul-searching that I’ve been doing.

1. Accepting that you’re born to eventually die and not worrying so much about the end but simply living in this very moment is the best life there can be.

2. If you take care of your spirit and your soul your back is covered. Whether you believe or not in god or a doctrine to understand the meaning of life, regardless, there was once a beginning of all things and there will be an ending of all things but everything comes from “one.” You don’t have to worry if you’re a good person and don’t damage yourself or harm others or the planet or anything beyond.

3. All we are is all we are – but not who we are. Some say we are only the summation of our experiences. But those circumstances of our experiences don’t simply make us exactly what we are and we can change. There are second chances and we can change. Some say people can never change but I say that’s absolutely false. I’ve seen people who have argued about the same things so many times but when they finally got down to what was really bothering them they were able to go forward and move forward and take care of their spirits and souls.

4. I have all I need right here and right now. If I want more than life itself then I’ll always feel life is a struggle. Leave behind the wants and the must-have’s and the lists of things. Buying doesn’t make you more human, but sharing does. Loving does. And being loved in return makes life an easy place to be. Life is terminal but let’s say this:

Life is easy let’s let it be and so it will be.

A little punning around with stage 4 cancer: my apologies

My Neuropathy – Sing to the tune of All Apologies by Nirvana

What else cant i eat? No meal is complete
Vegetable shakes no steak? Sugar is my bane
How tired am I today? I think in bed I’ll stay.
I cant feel my feet? My neuropathy

Can’t take sun, Its not fun
In the scan, In the scan
NED?
NEAD?
YEAH YEAH YEAH YEAH Yeah.

I am now stage 4, there’s a chemo course
I wish I was stage 3, that’s when I was free
I cant feel my hands, I cant even stand
Can’t think of what to say, chemo brain today

In the sun, I will burn a bright red I will turn
Metastases,
Metastases,
YEAH YEAH Yeah Yeah

YouTube Video of the real song performed by Nirvana

With credit to Nirvana, lyrics via https://www.lyricsondemand.com/n/nirvanalyrics/allapologieslyrics.html

Photo courtesy of: Breast cancer cells dividing. Image: National Cancer Institute

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.”