Breast Cancer Now’s Interview with Karin Sieger

karinsieger.com/interview-karin-sieger-breast-cancer-now/

Truthfully, I love Karin’s blog, her no nonsense philosophy, her podcasts – yes, that’s plural. She produces not one – but two podcasts, not just on coping with cancer but life in general on Soul Cravings. Both can be found in her eponymous blog. If you’ve not read or heard Karin, she gives advice through example using her experiences to show, rather than tell you how she’s coped, what she’s experienced having had two cancer diagnoses herself, and what lessons she’s learnt both in her own life as well as through the personal stories of others.

I’m lucky to have found Karin and gotten to “know” her through her voice and her support of my blog and my post diagnosis emotional well being. I adore her tenacity and the fact that she does all of this on a boat afloat the river Themes. Whether you personally are effected by cancer in any way or even if you’re not (unlikely given the number of people diagnosed and the extension of our diagnoses to friends and family, you’ll find something to pertain to you and those you love.

Once you tune in, I think you’ll understand why I’m a fan and a friend. This podcast, albeit one not of her production but very much of her making, in particular is close to my heart because of her candor and her no holds back style although the spotlight has turned to meet her – so take a listen. Thank you Karin, once again for the effort you put into what’s clearly a labor of love. And I love her for her generous soul. We should all crave to have a soul like her to guide us gently out of the dark corners cancer can lead us into.

Absolutely Late, Lately: Adding up the Moment(s) of Terminal Cancer

Everyone’s got the right to question the respectfulness of someone who’s perpetually late. Or do they?

I recently commented on a blog post with regards to feeling disrespected by people who don’t respect his time because they cannot arrive on time. Ignorance of individual consideration for specific situations never whispered beneath his indignation. My question back to him: perhaps there’s a few reasons that have nothing at all to do with you at all. Some people have limitations and one of those may be effecting someone very close to you either now or in your future: people with metastatic cancer.

Time Stand Still

In several blog posts, I raise points about what changes with a metastatic breast cancer diagnosis. My self inquiry never ends with the conclusions of the posts. I still question the change from (t) time=unknown to t=0 (death=0) due to the incredible number of factors associated with our mortality. The factors are further confused by the many interpersonal relationships in our lives. It’s in those intersections between people one question stands out. It’s a question that no self respecting breast cancer blogger won’t eventually ask themselves publicly.

Probably more self deprecating than self respecting, looking back on my four years here on WordPress reveals a number of mentions of this particular affectation. The most well- meaning of us with metastatic breast cancer finds themselves running behind the clock more than we’d like. I think I may have come up with a couple of reasons, not excuses, as to why we’d get sent to the principal’s office for our tardiness.

1.”It takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!” (Lewis Carroll, Alices Adventures in Wonderland)

Most people enjoy the freedom to make plans. Normally everyone lives without having to think much about plans they make day to day, week to week, month to month, and year to year. With terminal cancer, one lives on less than 24 hour notice. If you have a diagnosis of MBC or another metastasized cancer, you’ve probably had plans for the the day, and for which you have had to send the dreaded text or make the embarrassing call to say, ” I’m sorry I can’t make it, ” or “I’ll be two hours late.”

Why? There’s no time to catch up with yourself, looking at the current moment wondering how I got here and wanting to drink in all of what’s surrounding me. I can’t quench a thirst that’s infinite yet has an absolute end somewhere in sight. Trying to grab ahold of everything I drop my minutes like rain in a thunderstorm and I cannot get them gathered back up around me into a reasonable explanation. Not a satisfying one to the party receiving my lame cancellation.

  1. Dear, dear! How queer everything is to-Day. And yesterday things went on just as usual.” (Ibid.)

Nothing being the same yet all things being equal, you’ll find out just how strange life can get in a split second. People disappear who you held dear and you’ll have no reason why. People who you never thought would come through in a pinch, do. And over the fullness of time new people will find a place in your life.

For me, many of those people are either ethereal online support friends, people who are older and for whom age has presented the question of death many times, people who have similar prognoses, and those who have also brushed up against death. Aside from my older friends and not knowing the lateness of my online friends, everyone else who has stayed the course with me forgives my lateness.

If the attention you have ran at a deficit prior to a cancer diagnosis, post diagnosis you’re probably in for a special treat. If you also suffer from fatigue, this seems like a dichotomy.

  1. We’ve no time to wash the things between whiles.” (Ibid.)

Theres now the phenomenal time travel that happens while I take entirely too long in the bathroom.

I spend hours on end with good reason in the brightest room in the house: the potty. I am engaged with the toilet straining against constipation, trying to stop it’s devilish alter ego – diarrhea, vomiting from chemo or any number of reasons, or for the more pleasurable bathing to relieve pain and taking time to relax and practice self care. Additionally finding better ways to wear my bizarre post chemo hair or to cover your my of hair; and, doing my makeup and drawing in missing eyebrows can take up hours of my life, however limited my time may be.

No one wants to look sick. But the less sick you look the more people doubt your level of illness. It’s a catch 22, but a fact.

  1. I forgot.

  2. I remember!

6.”Not all who wander are lost. If you don’t know where you’re going any road can take you there.” (Ibid.)

Wanting more time before it’s all over leads me down the rabbit hole into a place where I get lost. Lost inside a book, a song, a sunrise, a hug, a poem I’m writing, a memory, or a hope for something in a future that can at any moment be cut like a scene in an editors office from a films final print. I’m not lost on my path, though. It’s winding and it’s convoluted and full of time that I’ve somehow let slip by.

Measuring the importance of what I’m up to at one moment versus doing something pedantic like the dishes or the laundry. Writing my next sentence rather than sitting in the living room where my friends are and not having any reason to sit out there with four guys who love me and take me seriously although I’ve been late or a no show on many occasions to appointments with all of them.

One gets where I’m coming from because his constant pain keeps him pinned to the bed for days on end. One has attention deficit that’d knock any 5th grader off his Ritalin. One suffers the continual strain against depression. Ones seen too much to care about time as a concept but cares so much about the people in his life you can count on him in any situation with a one word text message, “help.”

  1. “The hurrier I go, the behinder I get.” (Ibid.)

I’ve come to realize it’s so simple. If those who cannot understand make a little room to fit the different senses of what time we have to expend and not take it so personally, they may even learn something. My life before cancer was so filled with the stress of time and being punctual I have to wonder if it didn’t contribute in some way to my metastatic diagnosis.

Perhaps if I slowed down a little I might have even noticed my physical changes prior to the disease falling like a domino into stage four. But I won’t look back. I’ll simply look at the moment and breathe in all the possibilities right now has to offer. And I hope your time with me was well spent if you have cancer or not. I certainly respect your time as you read and even comment on my blog. It’s your gift and I cherish it.

On Fire

Bury me amongst the trees

Where redwoods overlook the sea

From atop a crossed mountain

Where my body will quicken

From flesh into sand.

Underneath the needle-bed

Blanket, the fibers of my hair weave

A way through the wind-filled leaves.

Heat my voice with borrowed sun

Which once kissed my cheeks

Where freckles reached to meet.

You now hear my broken chords

Faintly in the the distance unmoored

Tasting the salted shore. Safely clean

I lay down on a million fine grains of sand

Not feeling myself again I repeat

To no one: I am an empty vessel.

I’ll still wake every morning

Habitually, my hands still sleep

Parting the fitted sheets aways,

Long gone I still reach after you.

I am the water, then the dew

Maturing into a pinguid mist.

The palms clap and sway to

Conduct the band at noon

To play a song of our bequest.

The hour’s imminent.

Time to ride a wicked dream on

A silk weaved carpet twisted

With last night’s ghostly breath.

Come take inventory of my remains

Should the tree mark me no more.

The lumber that’s become of me

Taken over by the shore. I am a house

Now – shelter for a family to whom you

Lost me once again. My soul holds up

The walls now, my legs hammered

Into floorboards, arms encircle

Each bedroom where the dormers rest.

My fingers lace together to build

A painted white front porch,

That’s my hips now a swing

Hung there, under the eaves.

Look up to see my head holds high

A roof; my back’s now the front door

My eyes frame All the windows, my heart beats

In the kitchen. My birds left the

Forest knowing where my mouth now sings

And the woodpecker that lived inside my trunk

Hollowed out my attic in the spring.

Let me stand strong and steady

For at least a hundred years.

By then, long gone, you built your own

And our lives live on, unworldly yet eternally.

Looking down at the rubble of what’s

Left of my body in the demolition heap.

What at all might grow from me who once

You buried underneath a tree?

Let me now burn someone’s hands

Someone lit afire from my plight.

It’s cold outside where I once stood

In the trees and dark of night

And I’ll burn vast and luminous

My spirit gives newborn light.

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