A Metastatic Cancer Vacation

I know I’m fooling myself to believe that there’s any real break from metastatic cancer. I know that there’s no mandatory, compulsory vacation days in this new, completely abnormal lifelong career of metastatic cancer. However I recently made some decisions that take into account the enormous amount of energy cancer requires – physically, emotionally, and spiritually. Vacations really don’t cut it, so larger more life shifting actions in my own case were required. No one really seems to know the root cause of cancer related fatigue. A quick search on cancer and exhaustion comes up with sites like the Mayo Clinic and the American Cancer Society stating essentially its a number of things or none at all.

Chuang Tzsu Zen Master:
“There are no fixed limits. Time does not stand still. Nothing endures. Nothing is final… He who is wise sees near and far.”

Not only can the disease in our bodies exhaust us, but the constant activity load required truly is akin to a full time job. As rare as those of us who spend a lifetime working in a career position for a single company are those who live longer than 2.5 years with Metastatic Breast Cancer.Just the mere thought of it requires a nap. Be right back after I rest by eyes and grab a cup of fresh ginger tea.

Recently, my response to finding the energy to continue to live under current conditions and current cancer activity load is sheer exhaustion. Approaching five years de novo diagnosis I’m simply tired. Tired to the soul level. And like with a 9 to 5 job the associated tasks must be prioritized and checked off of an activity list. I knew things weren’t getting done as everything required both for life in general and for my cancer life.

Prior to about four weeks ago my list of to-dos stayed exactly the same for more more time than many things had to be completed. Many of the items on my list needed immediate tending but I just could not bring myself to finish. Simple things like phone calls to schedule appointments with my current Stanford oncologists and others to insure that my new team at UCSF was all ready transition me smoothly. My prescriptions and insurance needed tending to and my shots needed appointments. The level of procrastination simply outweighed the need. And I was creating huge problems for myself through simple denial.

I made one radical decision – to move away from the polluted, overcrowded, downright mean city of San Jose to the winding rivers and tree cover in the foothills of the Sierra mountains. We are currently in an Airbnb house half way through the three weeks we must spend waiting to close on our dream home. We are thinking of it as a mini vacation of sorts as we make circles around our new hometown. It’s a place I’ve only had daydreams of; the kind of place where friendships can spark over common interests. It’s for people who don’t mind letting others merge into traffic and tailgating is left to football game parties not for aggressive angry drivers trying to connect their bumper to your back fender.

I also made a very big decision to leave my beloved and take the available spot for a cancer retreat. I did this with guilt in tow as I left at 5 in the morning to drive north for my second week in two years at the Commonweal Cancer Help Program. I left my dear one with the last of the packing and clean up of our sold townhouse. I was on the fence about leaving him with my cat and the last of our possessions until the very last minute. See my previous post to understand why I so desperately needed to go. But it did far more than that. I’m convinced it saved my life.

Sand tray was the very last activity before I hit the road to meet him up in the area of our soon to be house and here’s the result of mine:

Said Prince Hamlet, “For there is nothing either good or bad, but thinking makes it so.”

I was indeed ready for a week of cleansing in every way. I landed exactly where I needed at a time of high volume stressors. And there’s no discounting the importance of getting away and feeling the safety of being held without guilt In the arms and the security of real love. All this from the dedication of people who helped small groups of eight people affected by cancer for over 30 years. Together they create a peaceful environment to learn about myself and get to the root causes of my cancer.

I came back with important learnings about myself and about self care. Alas I haven’t the foggiest why I stayed off technology for over a week after returning to the real world, perhaps the wandering duo and Simon the cat settling into our final Airbnb after two prior stays, having to punt my oncologist appointment from shear exhaustion and not wanting to make a drive over 3 hrs and actually finding a house all might have a bit to do with it.

The exhaustion hasn’t completely dissipated but I’m working on learning how to not allow it to build up as it had. It was also a creative boost I needed and I wrote about six poems in the past 10 days. I’m going to add to the end of each blog post a poem as a way to give the true inner space of my thinking and of my creativity. Here’s one I wrote and read to the group of leadership at Commonweal. I hope you like it as much as they do:

Why?
Why does it happen?
Because it transpired.
Why are we here?
Because we were hired.
What does this mean?
It means what’s intended.
What did you say?
You said what you meant to.
When do we go?
We’ll go when we’re dead.
What does it say?
Not a word unless read.
From where does it come?
Where everything goes.
Whom do I address?
Who really knows.
Ask any question and
expecting an answer
Is like watching a dance
without any dancers,
And the silence of an instrument
without a player.
There’s no God to question
without a prayer.
So rest your mind –
you are not your thoughts
And without your thoughts
you’re all spirit and heart.

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.”