Crossing Lines: writing eases the loneliness of disease

It’s time to take it up a notch here on the Cancerbus. I’m now four solid years into blogging and my fifth cancerversary since my metastatic breast cancer diagnosis in March, 2015. Naturally for my personality in order to write this blog with more rigor, I’ve turned to educating myself.

One educational direction is through other people’s personal essays. I’m also reading up on how to touch more people through engaging with the cancer and poetry community. As a result, I’m commenting more often other blogs I read. It’s a risk to be certain, and as such, I step on my proverbial tongue at times.

When I write up a post, my somewhat warped sense of humor percolates up, and any self importance sinks down in the word stream. It’s the part of the art, the crafting of the essay about a weighty topic as cancer is, to create a tone that’s conversational feels right to me. The tone of my blog probably appeals to some and not to others because of the no-bullshit, non-pinkified, lack of “let’s all sing Kumbaya .”

It’s authentic and it’s my story without flowery effluvium, little self pity, and I hope no need for sympathy. Words either flow or they don’t. Blogging isn’t easy. Responsible for my truth, it’s also not for the purpose of emotionally abusing my readers. If it’s purple and persimmon pretty sunsets you want, you arrived at the wrong web address.

Perhaps too late and impervious to the needs of other bloggers I’ve committed a faux pas or two by commenting much in my same voice. To write otherwise would feel disingenuous. The endangered species of the personal narrative co-exists awash a sea of me-too.

Comments bubble up from the dark waters of “atta girl” and “you got this” and “how beautiful (sad, unfortunate, wonderful) your situation.” The depth of commentary reveals the time a reader takes to try and comprehend even my more lachrymose posts without turning away. My goal never included becoming the most popular or beloved. Instead my decision seemed right to me: to cobble together the rough stones down in a path to the truth of grief, death, side effects, the pain and it’s remedies, loss of love, family and friends, arising from a disease and it’s discontents.

Sometimes it’s a very difficult path to lay. Even the photos can become hard to look at but harder to turn from looking away as in my post: Bone Deep: the painful reality of metastatic cancer.

Context for content(ment)

Recently after commenting on that post, of which no background for what despair this person had come to at the end of their treatment options. I felt near obligation given the missing history of the persons metastatic cancer and what treatments they’d previously endured. My heart sank as I felt them giving up hope. I could only empathize with the information written with no kind of link to a previous post of their journey. Generally I shy away from using the word “journey” in relation to MBC, the word most used by kinder, gentler blog writers.

My contextualization of metastatic disease co-mingles help in two ways:

  1. Plain, black and white discussions of all the experiences from the ugliest fleur du mal to the most heart felt and touching so there can be a personal connection between us – you and I, subject and object, reader and writer. Whether or not the reader had or has cancer should not matter, since it’s the experience of the human condition in which I strive to participate not only of terminal illness.

  2. Easing the loneliness among my sisters and brothers with metastatic cancer has always been the goal of starting the cancerbus.com. It may not help all readers. However given some of your encouraging commentary, your words fuel my desire to continue week after week.

Alone or lonely?

There’s a peace in solitude yet an anguish in loneliness. I suppose the imposition of solitude with cancer feels the loneliest of all. At that very moment you need all the support you can find, you find yourself isolated even in large crowds. No one can understand whose life is without disease. Dis-ease. Taken apart the word disease explains exactly what causes our loneliness. It’s not being at ease in our own bodies turned against the souls who resided within.

This is why I write, to ease the loneliness of metastatic cancer. To find kindred spirits out in the ether. And so that said, if I happen to meet you through your words probably written for much the same reason, please take my comments as they’re meant. A way to reach you in your writer’s space from one mind to another and sketch you a hug in the way that I’m lucky enough to find comes easy to me.

I’ll write you a love song to celebrate our lives, together yet apart. We have more than disease in common. We love life and want to hang on as long as possible, with those like ourselves who have death beating down our doors. Perhaps with more strength of numbers it can’t get through quite as fast, since loneliness creates a weaker immunity and allows our disease to win over our minds and not just our bodies.

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.”