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.

Maps and Legends

My epic signed by blue,
Pencils edited, erased.
Pages loosened and flew,
White winged birds sung,
Tightened claws bound to lines,
Snap and fly to inner space.

Shortened pagination,
Politely taken wayward
A palace ‘tross seaward.
My imagination skips,
Hissing gently, a light kiss,
Skip the lights aquatic,
Swan dive into the record.
Hole round against,
Metal and rusted center,
End over a feather,
A light in a jet stream.

Dripping ink and rain,
The last page set,
Down in a spring,
Slowly changing everything.
My books marked still,
On page one. Your laughter,
Soaked and heavy with disaster,
Sitting in the oak’s shade,
You kiss my nose and mark,
With cooled breasts. Wonderful
Of you. A park and your hand,
Reaches to shade your face,
As we read from the book
Of the dead and avoided,
The looks of their eyes,
Ashsmed and exploited.
Slaves and a haurcut.

You forgot.
Cash piles stashes,
Ashtrays and snug graves.
We all fall down.
The ground grows smaller,
As I pass the tree line,
Bangs on the Earth,
Becoming her daughter.
Funny to stand today,
Eclipsing the sun,
Looking down?
Avoiding blind faith,
Pin hole in a box,
Gentle and round.
Protect the last epoch,
Hidden in a rainstorm.
Injustice of ghost town.
What substance, space
She left us, just as wraith.

From Nifty to Niftier

In 2012, I was a “nifty” woman awarded the label of a top 50 women in technology on twitter by Webbiquity.com – hey that’s pretty cool. But today, my disabled body cannot find a way to arrive on time, maybe 50 minutes late, but not an award-worthy statistic. 2017 Nifty Fifty Flake. Making lemonade from the lemons that fall far from the tress and slooooowly attempting an ascension to the locally driven retail and internet word search puzzle grabbing customers to my Etsy site. I rise or try to anyway, to arise to the transcendent world of low tech ecofashion. I recently wrote a post on my Etsy shop about the waste in the fast fashion industry, which I had no idea existed until I researched the surface of what I’m trying to accomplish by selling vintage goods. I knew it was good for the environment but I had no idea about how good.

Here’s the post for your reading pleasure and feel free to visit my shop at http://www.etsy.com/post/yeuxdeux.

Hello, my fellow self proclaimed eco-fashionistas, please read on and give yourselves another pat on the back for buying vintage from a small purveyor. Your proud and your clothing says more about your real love of our planet and not just of great old fashion.
Imaging it’s about 7:30 on a regular weeknight and you walk from the offie to a working dinner with some clients. As you toss your 40’s baby blue crushed velvet jacket over your chair and sit down while placing a napkin over the lap of your favorite new old 50’s dress. You can also be aware of the ooh’s and aah’s, since we all know vintage when worn well brings us many questions and can be great conversation starters as well. And now you can also tell all those complimenting your gorgeous and unique, well fitted outfit the facts about today’s new “fast fashion,” akin to fast food, and the waste of the fashion industry since the second world war, especially in the United States.
Here’s some fast facts for you – and not just to make you feel good about buying good vintage, wearing it, gifting vintage and antique pieces, but about not filling our land with more waste from the now second largest polluter and waste maker of all manufacturing industries.
  • As much as 15% of fabric ends up trashed in the process of making clothes. (US EPA, 2016)
  • 11.1 million tons of clothing are thrown away per year and the average American trashes 63 pounds of textiles per year. (US EPA 2006)
  • The average T-shirt wastes 700 gallons of water in manufacturing (US EPA, 2017)

Petroleum-based polyester and poly blends comprise most garments manufactured today in fast fashion found in stores like Target, H&M and others. The fabric proves very hard to recycle without losing quality and therefore goes mainly to the dump along with 15% of the other wasted materials mentioned above, winding up on the manufacturing plant floor. We won’t discuss the overseas manufacturing of garments in China and the Philippines where blue jeans create a special kind of illness uno themselves to the human capital creating the tight pre-washed garments that make your ass look great!

And for the back pocket of your jeans, here’s the fast fashion facts you may want to take with you to continue that dinner conversation you started back in the introductory paragraph of this blog post:

  • US consumers buy 20 million garments per year
  • That means every man, woman, child, and not to mention pets in some cases buy 63 garments per person per year.
  • That means everyone buys at least 1+ garment per week.
    The US EPA 2017
Would you rather read an exciting new sky blue 1940’s jacket hand-made in gorgeous crushed velvet just came into YeuxDeux Vintage and is available for your re-use and environmentally savvy shopping – arriving in less than a week and ready for you to wear, or would you rather force yourself to get in the car, waste time and gas, buy something not quite so dazzling and at the same price, and chance that someone else at the table ran over to H&M for a cheap version of the same thing you ran over to H&M for at lunch to impress the customers at your table that evening?
More impressive is your still going to have this jacket in your wardrobe for years to come, and perhaps even have it for your daughter or niece or nephew to wear years from now when they steal it out of your closet?  I present to you the facts, my economically savvy and ecologically friendly favorite Etsy buyers. Isn’t that why we love vintage on another level – the real notion that we’re saving the future of our planet with fashion gifts from the past.

A rock feels no pain, and an island never lies…

Many of us experience isolation and walk alone in our cancer journeys. Regardless of the stage or type it's difficult and frightening, causing emotional strain and stressing the infrastructure of even our strongest relationships. My husband is in the third year of his depression. Although he’s trying, the lows and valleys run into and erase from memory the days and weeks with small glimmers of hope. He makes sure to remind me of the roof over my head but seems to have no recollection or reasonable understanding of how his depression continues to effect my health and the stressors of my 19 year old step son who lives in our home and does nothing but sleep and play video games with the door to his room shut.

He’s caused innumerable problems. After an hour he returned when I threw him out two weeks ago, with the encouragement of his own biological mother, and I feel trapped like a lab rat on a sinking ship. My pain is worse then ever and I am worse for the wear. I feel like there’s no way to find peace and air and light. I am stuck in a paradox worse than Xeno’s – staying in the current situation is de facto stressful and lonely; if I leave it’s de facto stressful and lonely. I’ve tired going out all day and keeping myself busy but I get so tired I find myself just sitting in my car sometimes wasting time and reasoning through unreasonable questions and behavior.

I've put years of my life into helping this boy. He’s spoiled and he’s not appreciative of how the foundation of a good life he’s rejected will bite him in his rear end when he gets older. Although he’s very much aware that he’s making my fight harder, it seems he does it quite purposely to create fights between my husband and I so I don’t have the veto to block his father from financing requests for undeserved expenses – he’s failed 11th grade three times now and he refuses to just do the little work to pass. I got him into the best charter school in our area and he's lied so I cannot show my face on campus but for the embarrassment.

As if this could get any worse I lost insurance for over a month and was switched to Medicare from Cal-Med -no paperwork from the government , just a call saying I could not go to the infusion center for my faslodex, xgeva, and zolodex and my appointments were cancelled until I had everything worked out. Ummm….yeah? Like this is a way to treat a 2+ year patient with a 10 year outlook?

I wonder if 10 years prognosis can make someone feel no better than a 2 year or less outlook or have a cold false smile from positive test results . Awful as it feels to say this I cannot help believing that emotions like happiness and joy cannot be a part of this life. What is my raison d'etre anyway? I cannot seem to make my husband believe I'm worth it to work at lifting the veil of his depression and stop blaming me for the natural course of time to take his son and let him find his way already. If he weren't depressed I know this kid wouldn't be here and my husband would not feel guilty if he were himself again.

But if wishes were dollars I would be very wealthy woman.

For whatever reason there is – biological or sociological or psychological – the stepmother reminds everyone of a failed marriage, a failed mother, a failed family. The new family units popping up everywhere are the norm now, not the exception. I think that some steps are better equipped than some biological parents to rear children, not to say a kid doesn’t need their parents somewhat like comparing that situation to an adoption. Not in my case. However, my husband happens to be adopted and has no real need to locate his biological mother or father. That said, he had an idyllic childhood and his biological mother did him a solid by giving him to people who really wanted to raise him and could afford to do so. Not that money buys love. It can't.

If I told you some of the shit sandwiches I've had to eat over the past 10 years, you'd never want to eat again. It's ingesting the worst kind of manipulation possible and allowing it to become part of our life's fabric. We cannot help the guilt and the pain that our steps go through – we do our best, many of us anyway, to help them rise above choices they didn't make. But so it goes, the bio mom has a lot to do with the kid's attitude as we enter these situations with the best of intentions. If intentions were dollar bills I'd be Bill Gates. I love both of those kids – regardless of the behavior each has bestowed upon me. My younger one now 16 apologized for his less than stellar behavior, calling me a gold digger and his dad a stupid bread winner not believing I looked sick enough to have cancer. This coincided with his pre-teen hormonal hell. He is kind, loving, and helpful to me as he was prior to puberty – quite the opposite of his brother.

My husband’s guilt won’t allow him to drop kick him out to find that in the real world there aren’t private bedroom suites with bathtubs and house cleaners and magic fridges that fill themselves, and magic cars that have gas and pick him up and drop him off anywhere for free anytime, and juice containers to put your unbrushed mouth full of germs on and drink the freshly squeezed juices I make, or lock yourself up in a bedroom with a lovely daybed cum couch (excuse the double entendre) and play guitar or xbox until all hours and sleep until 2 in the afternoon, or talk to an adult by yelling and cursing and without a modicum of respect, and I won’t go on…

So, the loneliness sets in deep.

May we all not have to get used to being alone, as there are too many of us to have to be done with people just because we have a metastatic cancer. In educating people who do not have active cancer, they’re surprised to learn that although there’s no evidence of tumors or worse, thankfully, because their immune systems recognize and erradicate them.

It seems like an eternity still, two years and three months since my diagnosis. When I hear comments from people who know little about the disease, and mostly from rather snarky people who say, “oh, you’ll be fine” or “you look too good to have cancer” or other demoralizing, ignorant statements as such, I do not mind educating any of them. It seems, however, few want to learn. In education we sometimes find a fear that we needn’t have uncovered so late in life. But is ignorance bliss and lying to ourselves better than knowing the truth?

In step parenting and in metastatic cancer, as with being a wife to someone with long term depression and his inadvertency to get the help he needs to give me some of the help I need, I wonder if the human condition doesn’t somehow rely on lying to itself in order to continue to propagate itself.  As the line said in the title of this post, and a rock feels no pain, and an island never cries. You Paul Simon, are a genius.

Here's a song to listen to as you contemplate the dense and intense feelings of both stepparents and cancer patients, as I wish for life to go o after me without the great isolation each situation causes it's victims. 

Simon and Garfunkel, I am a Rock