“Becoming a Metastatic Breast Cancer Advocate” by Ilene Kaminsky – A #MetsMonday Featured Post

It’s with pleasure I share the next #MetsMonday Featured Post. This one is from my online friend and fellow blogger, Ilene. Ilene shares about her evolution becoming an advocate for those with metastatic breast cancer.

Update: Sadly, Ilene died from metastatic breast cancer on November 27, 2021.

Ilene was an amazing advocate for countless others, too, as she embraced everyone impacted by cancer, regardless of gender, age, cancer type or stage.

Be sure to visit her blog, The Cancer Bus. She was an amazing writer and poet. You’ll quickly become a fan too.

If you’d like to submit an article for consideration to be a #MetsMonday Featured Post, email me at nancy@nancyspoint.com.

How I Became an Advocate for Those with MBC

by Ilene Kaminsky

March 25th, 2015 at 4:30 am.

You never forget certain moments in your life. This moment in time changed everything — without exaggeration — for what was left of my life.

My husband and I sat together on the plastic covered bed, tubes pumping Dilaudid  and anti-nausea medication through my veins. We tightly held one another’s hands. Two friends stood just outside the door in the echoy hallway, as we all waited to hear why they’d called my husband back to the hospital so urgently. 

The doctor on duty began questioning me rather rudely. “Do you have an alcohol problem? We believe you have cirrhosis of the liver.”

I slowly shook my head in the no direction.

As the drugs created a wave of a blur in my head, I began to visibly become nauseous again, despite the IV. Craig looked at me as though I’d been hiding a secret as big as a few million in the bank. 

“Well, we’re fairly certain you have stage four breast cancer, and it’s in most of your organs. We will know more after we drain your abdomen of a large amount of ascites fluid. That will happen in the next hour and we’ll do another PET scan with contrast. We’ve already scheduled a surgeon to implant a port in your chest to make chemotherapy infusions and blood draws easier.

Oh, and can you sign this waiver, read over these documents, fill in and sign and date this advanced directive? Also, please assign a medical custodian should you be unable to speak for yourself.” 

Blink. Blink.

She asked if I’d understood as though I were just sentenced to life in prison. And in some ways, metastatic breast cancer is a life sentence, especially with the solitary confinement of the COVID-19 pandemic.

Doing time while waiting for our lives to return to some former facsimile of what they once looked like.

I feel robbed of my precious and invaluable time — something anyone with a terminal illness has little, if any, to spare. 

Time I’d thought I’d invest in some simple things like travel, meeting my virtual friends in person and being outdoors free to roam as I like. Time, too, for more complex activities like clinical trials across country that remain in suspended animation while my clock keeps ticking.

Diagnosis wasn’t presented with a shred of visible empathy.

Apparently, as we came to find out, two hospitals behind the scenes battled over my insurance dollars. In our haste to relieve the incredible and unbearable pain and projectile vomiting, Craig took me to the “wrong hospital.”  

More confusion ensued. Frightening  confusion. “Umm!?! Excuse me, how do you know I have cancer? I just had a mammogram?”

“It would appear you have three tumors in your right breast and level four breast density, so it’s likely it was missed in your films. We believe it’s hormone receptor positive and primarily estrogen receptor not progesterone receptor and it’s lobular not ductal, a more rare form of tumor.”

My head was spinning. I’d never heard these things from anyone before. I’d never had to research breast cancer.

My father’s mother died when I was five years old. My grandmother who loved me so dearly. I was the daughter she dreamed of having her entire life. I have her 1921 graduation signature book from high school wherein she stated a daughter and an education were the two things she wanted most.

She had my father (Leonard) in 1941, nearly dying giving birth to him and his stillborn twin Louis.

I wasn’t certain it was breast cancer that killed her when I was a young girl, but I am now. I remember her attached to an IV drip, smoking a cigarette while sitting in a velvet club chair by the window in my grandparents’ living room.

In one photo, she had me on her lap as she looked out the window of their high-rise apartment overlooking Manhattan. She looked so tired. I’m looking up at her face. I wonder what I’d been thinking. But unfortunately, I can now understand how she was likely feeling that day.

A New Vocabulary 

Ascites? Power Port? Lobular? Dense breast tissue? Hormone receptor? What did all this mean? Was anyone going to explain?

I certainly could have used a patient advocate or nurse navigator.

The oncologists at the hospital where I was diagnosed gave me less than six months.

I replied, “I’m sorry I don’t have time right now to die. I’ve too much to do.”

As you might imagine, they didn’t laugh. It wasn’t meant to be funny either.

Six hours later, I awoke from surgery with a Power Port implanted in my right chest wall attached to my external carotid artery. I sat dumbfounded after the incredible and capable port surgeon left me with an “appliance” over my right breast. Not a toaster or a dishwasher. My new “appliance” was not the sort of thing I’d ever thought of or knew would come in handier than both of those aforementioned ones combined. Far more.

Questions, Confusion, and Uncertainty 

What happened to me?

What did all this mean?

Where did my friends go?

Why hasn’t my family called?

What do I do now?

Are our finances in danger of being bankrupted?

This level of absolutely frightening uncertain terror is the primary reason why I am now an advocate, trained by personal experiences as well as several organizations.

I suppose I’d meant this very thing when I had told the doctor I was too busy for death that moment when they coldly informed me of my diagnosis and hasty prognosis that 25th day of March, 2015.

Becoming an Advocate

Advocacy accomplishes several important tasks for which everyone whose cancer diagnosis leaves them to figure out. Mainly, answers to some very personal questions. Questions no one can really answer for us.

But, advocacy does attempt to comfort sometimes by simply and deeply listening without the need to explain everything one feels or thinks. I’ve been where you are — you’re not crazy, and I’m here for you.

MBC-focused advocacy at its foundation attempts to broaden the education to both MBC and non-MBC diagnosed people. The goal is to help the patient and her caregivers and family and whomever wants to know, where to find science-backed information, financial resources, blogs as well as other virtual sites to find comfort in knowing she/he is not alone. Helping patients figure out what’s been accomplished in research and what’s still requiring a lot more work is also an important part of advocacy for me. 

Since my Living Beyond Breast Cancer year of virtual advocacy began, I’ve trained to be an advocate and to lead virtual support groups using the Healing Circles framework. I’m going about putting one together that I will lead at Stanford.

My palliative oncologist suggested to the staff that I would make a good candidate to do it, and I accepted the offer to attempt to quickly cut through what might become a jumble of red tape and bureaucratic BS last week.

I’m not even started yet, but by the time this post is done, I’ll have made progress.

Advocacy is about the softer things, too, like doing an episode of the Brain Cancer Diaries on Poetry, and talking openly about my personal experiences as well as using my Etsy shop to raise awareness.

I consider you, Nancy, a great advocate for change in how MBC is approached due to your own personal relationship to it with your mom’s death, and I feel very close to you as a result of our friendship over the years.

Thank you for inviting me to contribute to your blog and to continue our virtual conversation that comes along with writing our blogs.

Blogging is a conveyor of information no doubt, but also the most expressive example of how hope and common ground become the foundation for different kinds of support.

And that support fertilizes the blossoming and blooming relationships I’ve found through our chosen medium.

Without it, how could the life I lead be as rich or as full as it’s become?

During this pandemic when uncertainty and isolation grow like weeds in our gardens, perhaps the flowers grow and brighten our lives.

Without them, the tedium of weeding to find any worthwhile love and camaraderie wouldn’t bear the fruits of our labors of love.

Ilene’s Bio: I’m a poet. I am a writer. I am a woman with metastatic breast cancer. I’m a patient advocate for LBBC – Living Beyond Breast Cancer, a contributor to other blogs and books on the topic, and share the love of a wide virtual support network of friends worldwide. In my other life, I spent 25 years working in marketing and communications. Now, simply living is a full-time job. I spend at least 10 business days a month dedicated to doctors visits, tests, chemo, drug therapy, research and patient advocacy. An equivalent number of days is spent recovering emotionally and physically from the aforementioned. I live in the Sierra foothills of Northern California with my husband and partner of nearly 14 years and my cat son, Simon. I’m also a stepmom to two handsome boys 22 and 19. Ask me any question you want about my experience related to MBC and I am happy to share, even very intimate information if it can help someone else.

RIP, Ilene. I promise #wewillnotforget and that the work you were such a huge part of will continue.

Visit Ilene’s blog: The Cancer Bus.
Visit Ilene’s Etsy shop:  www.etsy.com/shop/YeuxDeux

Do you have a comment or memory about Ilene to share?

If applicable and regardless of cancer type or stage at diagnosis, were you assigned a patient advocate or nurse navigator of any sort?

If applicable, where do you turn for cancer support other than doctors, family and friends?