A Pinktober Contest and #4forStageIV


Four word for stage IV metastatic breast cancer: these four important words describe only the tip of the psychosocial iceberg that is where I #LiveBeyondBC. Truthfully, I do comprehend that life itself is terminal. Birth yields death. No need to lecture me on ontology. Yet I have cancer that’s gone beyond my dense breasts to distant places in my body. So, when someone comments that, “everyone’s going to die sometime,” I cringe. When I received a diagnosis 5 1/2 years ago of stage IV metastatic breast cancer, death became a very concrete part of my daily life.

It’s not some abstraction of some day in the distant future. Yet I’m hopeful that the developments of treatments and medications continue to come on the market. I may look good for someone who’s dying, yet these treatment that fend off my cancer also destroy my body. I’ve beaten the odds which also makes people wonder if I’m not overstating my illness.

Only 23% of those diagnosed with MBC make the five-year mark. Imagine what life would feel like if you were unable make long-term plans because of your uncertain mortality? I must live in the moment, and in between tests, PET scans and CT scans. I’m grateful when the results show my disease is stable and without progression.

I can no longer walk a path that once stretched out as far as my mind could conceive. I’m living with a disease that I will one day die from, as will 100% of those diagnosed with MBC. Please don’t pity me. I share my story because it’s a part of patient advocacy. I want to use my experiences to help others should they become one of every eight women who will be diagnosed with breast cancer; 40% of whom will die from MBC. We live in a time of a disease that’s killing hundreds of thousands. 155,000 are living with MBC, too. These statistics don’t include everyone, these statistics don’t include people who live beyond five years like me, but I’m still alive.

The above is part of my #4forStageIV twitter campaign on behalf of my 2020 patient advocacy for Living Beyond Breast Cancer, LBBC.org can be seen pinned to my account on Twitter @ilenealizah and on Facebook and Instagram. It benefits all people diagnosed with breast cancer – and that’s a number that far surpasses the current COVID19 pandemic. 1 of 8 women will be diagnosed in their lifetime. 40% will be diagnosed with secondary breast cancer or metastatic breast cancers. Yet there’s only a single day dedicated to metastatic breast cancer – October 13th. A single day represents the 114 people who will die that day of the 155,000 who we know have a terminal illness. Or that it kills 100% of all those diagnosed with stage 4 breast cancer.

A single day in the middle of 31 days of pink, feel-good fund raising, walks, runs, talks, zoom calls, tweets and Facebook posts. It’s not addressing the fact that the retailers and consumer brands that use our illness to make themselves look like they care and are philanthropic heroes of breast cancer awareness. Some are. Many are not. Please read Breast Cancer Actions corporate giving policy and it’s very important information on why we must ask the hard questions and advocate for transparency in corporate giving https://bcaction.org/our-take-on-breast-cancer/patients-before-profits/#anchor1

Mamba Moose and Revolta

I love a good smoothie. Some days it’s the only nutrition I can get down my gullet. Last year the retailer of such juicy drinks gave some portion of their sales for the month of October to “breast cancer.” Now I’m not certain of how giving a disease money helps fend it off. If anything, it seems like it would help the disease to propagate across more than 1:8 women. So I asked the sweet 19 year old worker if she knew what percentage of my $8.00 smoothie would go to “breast cancer” and to which charitable organization it would help. She looked panicked and dodged my bullet by offering to go get her manager. Same question to you, manger of a smoothie shop that rhymes with Mamba Moose and Samba Spruce. She said that corporate didn’t inform her or the store what the details were of the great fundraising push. I asked who I could call to find out and she said she didn’t know.

Smoothie move. Thanks for pink washing my favorite daytime food. I asked every other shop, restaurant, and other retail establishment I entered last year that promoted an unspecified percentage of people’s dollars spent to help beat breast cancer. Mostly, I received the same or similar response. I left my phone number with the district manager in San Jose at the beauty outlet that rhymes with Revolta, who promised to find out and give me a call.

Can you guess the results of this fact finding mission?

A. Call from district manager with the percentage and the benefiting organization.

B. Call from same DM with the sad news she tried but was unable to find out the answer to my question.

C. A call from the VP of marketing of Revolta with a gift certificate to help afford the pricy makeup I buy to make me feel human and the information I requested.

D. None of the above and no call or communication from anyone.

If you chose D, you’re correct. No one called or sent an email or snail mail or any kind of communication at all. Breast Cancer Action https://bcaction.org has lots of incredibly useful information and I highly recommend their site to you for a good look into the use of breast cancer as marketing tool. There’s plenty of ribbons and t-shirts and Other forms of wearable items that people feel less guilty about real dollars to real organizations.

A Real Pink Contest for Real Prizes

Maybe I’m unique. Maybe you’ve had dissimilar experiences and have gotten satisfactory answers from the corporate giving machines. I’d love to hear from you and challenge you to a small contest. If you win I will be giving away valuable prizes as a gift for your efforts.

The 2020 Pink Washing Awareness Contest

To win you must seek out answers from three (3) corporate entities and write your findings into a short paragraph in the comments section below to report on your findings. You must also use at least one social media platform (Twitter, Instagram, Facebook, etc. etc.) to promote your findings and copy and paste the link back to this post where you’ll put your findings in the comments section.

Extra bonus points if you’d like to do a guest blog post for your interesting escapades into the world of pink washing for pinktober!

First prize: $200 dollars to spend in my Etsy shop http://www.etsy.com/shop/yeuxdeux on anything you choose! That’s right. Free domestic shipping but please help if you live outside of the US by covering the 1/2 the cost of shipping.

Second prize: 100 dollars to spend in my Etsy shop http://www.etsy.com/shop/yeuxdeux on anything you choose! That’s right. Free domestic shipping but please help if you live outside of the US by covering the 1/2 the cost of shipping. To win second prize you must find the same information from one corporate entity and write a paragraph to appear on https://cancerbus.com/ – also use at least one social media platform to promote your findings and link back to the post on my site once it’s completed.

Third prize: Promote this contest on your blog, social media platforms and so on – whomever can count up the most promotions and links back to my blog post will win $50 dollars to spend at my Etsy shop http://www.etsy.com/shop/yeuxdeux – you must include the url for this post and get creative in how you’d like to promote the contest.

The contest closes at the end of #breastcancerawarenessmonth – November 1st, 2020 – and winners will be notified by November 15th. You’ll have until the end of the calendar year to select your prize. And gentlemen, I also carry men’s items and what a fabulous way to thank the woman or man in your life with a beautiful antique or vintage gift in time for the holidays.

You do not need to have cancer to enter. You do not need to ask large chains or huge retailers – it can be local shops too, but we want to call attention to using pink washing as a marketing tool and not a real way to raise awareness or help people, charitable organizations, or research with monies collected to enhance their brand. Breast cancer isn’t a tool for making companies look good and which profit on the suffering of human beings. It’s a serious matter.

The Color of Cancer

For this the beginning of Breast Cancer Awareness month, we the stage four terminally ill are allotted one whole day, October 13th. I was diagnosed de novo (from the beginning), as my genetics, dense breasts, and missed diagnoses led me to my prison cell on death row on March 25th, 2015 at 4:30 am. I remember that moment like a mother remembers the time she gave birth to her child. And the moment we’re born our life begins ticking away – life is terminal. Yet I know what it feels like to know I’m going to die and from what. It’s no abstraction like it is to someone who has said to me, “well, we’re all going to die someday.”

You’re right. But the truth is you can make long-term plans, can envision your future, can see a purpose to your life. I’m jealous of you. Don’t talk to me about your unhappiness over your wrinkles or getting old or having a breast reduction. I don’t want to hear about it – be happy with your beauty. Beauty lies inside all of us. Accept the joys of aging with grace, just as I’ve accepted my death sentence. I may have a week or a year or seven. Who knows. But don’t steal my #hope. Don’t take away #love. Don’t leave me in #isolation. Look deeply into my eyes, where beyond how good I look you’ll really see my #pain.

So in honor of this “pinktober” I leave you with my poetry. My writing defines me now as does my stage four cancer. I hope it’s a poem that stays with you because I’ve laid it out without much metaphor to hide what’s inside and hurts with pain so deep it’s beyond the soul. Peace peace, beloved body heal thyself I pray each night… as a dear woman I knew would say while holding my tear soaked face. She dedicate her life to healing those with terminal cancer and we lost her two years ago – she’s with the other angels who love us along with those we’ve lost. And one more is one too many.

My ugly secrets hide beneath my thin skin. Am I disdainful, dreadful? I must die from my sins.

Infinitely fighting in my lonely final tour, I miss the cut by a late stage four.

A survivor staring into the eyes of the dead, guilty for it’s them and not me instead.

Now home I’m stitched together a drain in my gut, my heart beats in inside the death of a thousand cuts.

Side by side in an endless parade, seeing you lockstep the line shorter each day.

Fading away in the testbeds of science, fitted with armor in a dangerous alliance.

Open up our uniforms – we’re memorialized by pink scars that magic potions materialize.

I return home to live like a bird in a cage, with an open door I won’t fly…too afraid.

Try to coax my mind from this prison by tying pink ribbons. Those around my trunks – drawn scars from incisions.

Please just turn tearfully away from my door. It’s your fear of emptiness, leaving burnt offerings a taste I deplore .

I found a card you’d attached to the devils food cake. The note simply said: “with love, please keep the plate.”

In the suburban foliage I am incinerated, by the needle of agent orange my body’s obliterated.

With unsteady eyes I scan the papers for new a strategic position. Yet hiring the dying requires expensive supervision.

I find work as a suicide bomber and spend my days toiling in my pajamas.

I want to wear my cancer on my head, and I turn up my collar, so you won’t notice the scars I wear medals of honor.

My arms decorated by kisses of needles and iris colored bruises that came with my freedom.

Yet I cover myself in an empresses’ new clothes, embroidered with test results and dyed the color of roses.

I’m too ugly for a bouquet of flowers that I’m too pretty to receive in the 11th hour.

And ‘neath all this painted on beauty for which you judge me: Looking too good you begrudge instead what you can see.

My lies hide inside tunnels, only discovered in pink undertones, which light up and contrast with my beautiful bones.

Your eyes downcast rolling inside your shaking head in disbelief, stealing the last of my pride like a thief.

To you I’m just another junkie begging for a day without rain, without any pills that ease my pain.

You find me anonymously in an infusion chair , sitting and sweating and praying you only stare.

I am the Marine who comes home in a body bag without any glory, no pink procession, no honorable discharge, no war stories.

How you turn and march away, goose-stepping in formation waving goodbye to my face with your dollar donation.

I bravely smile at you searching blindly for another word for death as you back away, guilty.

Looking down my rifle’s sight, I find myself in the mirror, knowing I may not find tomorrow.

Don’t wonder where I’ve gone and don’t answer my cries, instead live on in my legacy and say, “goodbye.”

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.