My Sad Week and Report on The Global State of Affairs of #mBC #MetastaticBC

www.breastcancervision.com/sites/default/files/review-mbc/decade_report_full_report_final.pdf

This is well worth your time to skim or even fully immerse yourself in, and I’d say is still relevant as far as attitudes and education go. Especially of advocacy.

I’m feeling sad this week as I should have been in Philadelphia with the Living Beyond Breast Cancer 2020 conference getting trained up and becoming one of the honored selectees to represent and act on behalf of the people who need it most – the patients. And become another voice to deliver the messages where they’re most needed. I’m really down because we couldn’t get a real story from our government to stave off a crisis. We were lied to. Cheated. Made vulnerable.

And I’ve not wanted to ever hear – don’t mention you’re terminal illness if you wind up in the hospital with the virus. You may not get a test or even a ventilator because you’re dying anyway. What if someone more valuable or worthy arrives?

Here’s a poem for you and my tears track around it like the little girl just learning that life means death. I hardly need to explain this to anyone reading. I love you all.

Erasure

Sad, long shadow-colored faces stare out from my past,

As time sits in my lap like any child.

Her wheaten braids, long

Punctuated by red ribbon,

With hands worried raw

Her eyes like a glass doll’s,

Wise with false memory

From fables and lies.

Comforting her with

Neverlands and evermores

I name her Tomorrow —

Yesterday’s taken.

Somewhere a darkened classroom with every wall covered

In blackboards time waits for me.

Wispy white chalk ghosts pinned by a futile hand

Tonight’s erasers coughed up puffs of smoke

Clean them free of my numbers and your letters as

I add them together.

Can I call upon anyone to raise their hand

For the answer is sometimes so clear

But the corrections

The incorrections.

Out in the yard I saw the remaining clouds,

Silver shivering unlined,

Too light to stay and easily blown away

At once leaving only light

Filtered into my pin pupil eyes.

And I without warning and against advice –

I stare into the sun.

Overcome by warmth in my extremities

From over the hills a white flutter appears.

It’s not a bird, the cloudless sky does oblige

Without wind. What fell at my feet:

I lifted up a note to: me. Please return

To: Eternally. He asks for a promise:

Now, here, you and only you

May love capture, like a photograph only

Just enough for talking too much to laugh.

What’s eternity’s address

The letter remains in my pocket

And waits for me to join

The rest in time and peace of mind.

What’s Changed in Five Years with Metastatic Breast Cancer

Warning – a philosophical stream of breast cancer consciousness ahead. And some good news – after three years of applications I made it to the Living Beyond Breast Cancer’s Hear My Voice program and I’ll train in April to evoke the role of Patient Advocate. Some things do change for the better.

But some days nothing at all seems to work. My body just cannot cooperate. Desperate and jubilant, isolated and surrounded, frightened and soothed, all on the roller coaster hoping the slow climb up will take forever and not send me screaming on a steep downslope to a dead stop. After five years I feel like I am sitting in a bathtub full of ice cubes when I think about having cancer. In a way it’s easier saying it and engaging in discussions about it because conversations naturally end.

My mind loses track of time when I think about things. One of the things I think about is Cancer and the role of the disease, which has taken over as a full time job. I didn’t hire it. But this new employee of the brand of me I used to be changed. In some ways for the best yet not for the better.

I feel like I used to be Coca-Cola then some idiots in corporate decided there needed to be a new me, so like New Coke (for those of you reading who are too young to remember it was a MASSIVE failure and still the brunt of many jokes). Like New Coke, I lost the support of my friends and relatives one after the other, yet finding love in the strangest and most unexpected people, and it’s all a mess.

I hope for the best, demand the care I need and want, I cry sometimes all alone and sometimes I cry at night when I cannot sleep out of frustration. I cry from pain that drugs can’t touch anymore because of my fast metabolism and built up tolerance.

Sleep requirements have changed, too, although my body always fought sleep so I’ve never slept well. I couldn’t wait to get up in the morning and see what would happen – all curiosity and annoyance to my mother’s chagrin when I was a little girl. Now I can’t get to sleep – and I’ve tried everything. Guided imagery. Meditation. Everything, but my mind and body aren’t cooperating. Now I’d make the worst employee being in pain and going to constant doctors appointments and being perpetually late.

It’s all so broken. But in breaking things down, I grow. I will grow something beautiful from my wreckage. It’s debatable what beautiful new things will arise from my broken life. I don’t even know if I’ll be living next year. But I know I’ve survived as well as I can, unselfishly and without too many apologies necessary. I wish I could talk to some people who meant so much to me. Explain. Yet no one needs to explain themselves. We hope apologies will come to people from a place of humble strength. Mostly I’ve come to understand apologies connote weakness to most people.

I feel the Psithurism – the sound of the wind through the trees. That’s why we moved away from the city – away from the crash of cars on the shorelines of garage doors, away from the rage emitted by the people you meet by “accident” – accidents don’t happen on purpose so why get enraged?
It’s your blood boiling. Cars usually can be fixed if not catastrophic. So why burden your soul with objects. Granted one must get from here to there. But it can always wait. Oh there will be those who hit you purposely, but it’s because they’re in so much need they chose you to get the correct to their directions to their destination.

One shouldn’t leave the scene of any accident without apologizing even if not at fault. You arrived there, too. The attention of the driver of the car at fault wasn’t on you. However, don’t let anyone curse you for being in the way or driving slower than they’d have liked.

Have you ever noticed how drivers who race to get in front of you are always at the sand red traffic light three blocks away? This is the sound of the wind through the trees. Accidentally meeting on platforms of unintended consequences. We are polarized by them, yet also congealed into a single warring faction against one another. Why when we know something is untrue can we stand around and shake our heads, “yes” in unity around a false value. It’s not valuable to anyone. Can you hear the grumbling of the loneliest people in the world? The people who seem to be the most popular have no idea who really loves them. Give them a test and ask if they’re loved – and can they really say the sycophants around them define love? I haven’t the time to pray for the preyers.

I may on that day experience ellipsism – that sense of sadness one might experience when realizing your life’s term will not include the future. And as I hear the psithurism, the rustle of the leaves in the trees, or smell the petrichor on the highway, the scent of oil coming up from the road after the rain that day, I realize nothing accidentally happens.

Getting in the car that morning, understanding things would change, my chemotherapy, my appointment structure from in person to telemedicine, my driving habits, my nutrition, my entirety of existence, that I’d fall not far and get up again.
Here I am five years gone maybe five to go of course if I am to continue to be so lucky, and see the true resilience of myself and this planet. Neither of us have long to go so I inhale the oil, feel the breeze and think of how long I might sit waiting again to be late for appointments and how it all really doesn’t matter to me in the long run because there’s no long run. It’s been a short one so far, and I feel some sadness that this may be my very last accident, like 2020 may have been my last new year’s eve.

Or maybe not. Hope. That naughty word I love to taste as it delicately rolls through my lips like a kiss or a whistle. Hope became an endangered emotion like a species of animal. The fragile ecosystem, the human mind, may be the last place I see but isn’t that true for all of us?

.

Diagnosis Fallout: the week after first learning I had stage IV breast cancer

On the eve of Breast Cancer Month, which I shall only acknowledge with true stories of the struggles of stage IV cancer “metavivors” I will kick off with a letter to a team of oncologists at Valley Med in San Jose California nearly five years ago. I reached out to their group out of sheer desperation one week after I was diagnosed de novo. I wasn’t diagnosed prior to this because of my very dense breast tissue that’s indiscernible from tumors. Regular mammograms aren’t given until the age of 50 and most dense breast cancers are found between the ages of 40 and 50, and we have a much higher risk of breast cancer, too.

With that I present the letter that was answered by phone call with the offer of an appointment five months after I sent this letter via email, mail, and fax:

I write this hoping it does not fall upon deaf ears and plead with you for help and have nowhere to turn it seems otherwise…

I was admitted to Good Samaritan Hospital’s oncology floor last week after a late night in the emergency room and in the early morning of Tuesday the 25th at 1:00 am. At that time my primary physician and I concurred that the cause of my severe, and crushingly painful cramps after 18 hours of vomiting most likely was food poisoning. I was finally released this past Saturday the 28th of March late afternoon with a MedPort inserted in my chest, a diagnosis of stage IV terminal cancer that immediately requires treatment for a metastasized malignant tumor diagnosed by the oncology staff and based on a dozen or so tests.

Mind you I was seen by an oncologist, for just under five minutes after 6:00 pm Friday the 27th. The doctor stopped by and said he could not advise me, but did say I should take the “hormonal treatment path rather than the chemotherapy path,” but he could not be my oncologist. I’d already seen a surgeon and was “biopsied and operated on for a medical chemo treatment port.” He apologized and swiftly left my room.

The cancer is causing many problems and I’ve now reviewed all of my online records to find the state changed my coverage and without notifying me, however, I am allowed to receive care according to page 38 in the handbook for these types of situations without the consent or referral of a PCP. For approximately three days we were given the run around as I laid unfed, mainly ignored except by a few good RNs, and in pain. The administrative staff wanted me out and told me this was due to constant pressure by Valley Med to get “their patient” because I “represented their money.” This is no exaggeration.

I order to move things along I was provided surgery by Dr. Jeffrey Gutman (now retired) whose disregard for money overcame the hospitals’ greed, and set me on an expeditious path to treatment. Friday, after three days, CalMed informed me that my primary care organization through CalMed changed unbeknownst to me. Valley Med was my provider and Good Sam refused me any further treatment even though my partner explained he would be glad to cover any additional costs until the transfer to Valley. Good Samaritan declined his offer of cash, instead discharging me with a big bag of prescription medication on Saturday.

I required a referral from my Primary Care Physician. I no longer knew my doctors. This referral from my new PCP, the Indian Health Center, HAD to to come to Valley Med to receive any further care. Monday morning, March 30th, 2015, I telephoned and left messages with no response no fewer than five times. My friend drove me to the Indian Health Center at 2:00 pm where I was unknown and thus treated to a series of comical paperwork procedures. We were left sitting in a room with two armed body guards to oversee children with the flu, pregnant women, and several people in line for their prescriptions to various category II narcotics, and us. I was asked to fill in some forms after which we were taken to an unfurnished, nonmedical building next door to this very unsanitary facility. This place happened not to be a facilitator of healthcare but instead a gatekeeper of desperate patients in need.

I have tried everything and of course this stress is taking a toll on my declining health. I can only plead with you: Please do not turn your backs. My father passed away from brain cancer nearly three years ago and the travel to help him and take care of his final wishes as his medical custodian forced my unemployment and the immanent decision of using CalMed as a back up in case of emergency. That seemed a wise choice and having no communication from California or Santa Clara County (I’ve lived in the same address/ residence for six years and have my September 2014 insurance card) I’m beginning to wonder what false hope I stood upon to receive such an awful prognosis – both of my health and of the potential of proper treatment.

Please help me. I am swimming in red tape, prescriptions and simply cannot reach anyone to begin treatments which I desperately require.