Seven percent. My ramblings of a morning . . .

This week, I read Ina Jaffe’s piece on metastatic breast cancer (MBC).

I couldn’t have said it better myself: https://www.npr.org/2021/06/22/1009065462/breast-cancer-research-funding-metastatic-disease

From the article: “As I began to research metastatic breast cancer, I came across the stunning statistic that only 7% of funding for breast cancer research is devoted to metastatic disease. Did I mention that this is the kind that kills you?” (Jaffe)

Seven percent of breast cancer $$ is devoted to metastatic breast disease.
Seven percent.
All those football teams and buttons and ribbons and bagels (seriously, I once was given a breast cancer ribbon shaped bagel — um, hard pass) that are ostensibly “raising money to fight breast cancer”?
Where is that money going?
Because as my brilliant surgeon, Dr. Dupree, once told me “cancer inside of the breast doesn’t kill women. Breast cancer outside of the breast does.”
And that’s what MBC is — breast cancer that has spread to other parts of our body.

In my case, as of my last PET scan, it had spread “only” to my bones,
and the Ibrance I take for 21 days per month seems to be working at keeping
the cancer “in check” for now.

Sometimes, on this “blog” I make jokes about my struggles with cancer, but the truth is a little less “funny.”

The truth is I think about cancer every day of my life. I have no choice.
I worry about cancer every day of my life. I have no choice.
Every decision I make about what I put in my body, I wonder, “Will this make the cancer spread faster than it’s already spread?”
This is the way I live my life.

Yesterday, though my parents are visiting, I felt too tired to leave the house.
As an MBC patient, I know (from past “experimentation”) that if I push my body past the “exhaustion point,” I will make myself perniciously ill.
I will end up in an Emergency Room, and I do not want to be in a hospital if I can avoid it.

Seven percent.

Modern medical science cured impotence in males, but we can’t seem to pony up the money or scientific expertise to cure this disease that impacts and kills many women every year, and as Jaffe notes in her article, when compared to survival rates for white American Women, Black women die of breast cancer at much higher rates.

This is apathy on the part of a patriarchal society.
Indifference, which is in many ways a far more dangerous state-of-mind
for the human animal than seething rage or sloppy lust,
drives the $$ that goes toward Breast Cancer research away
from actual, meaningful, scientific research and into the production of pink ribbons.
Ain’t no pink ribbon going to save my life, ya jack asses!
No bagel. No football jersey. No sporty cap.
None of these things are going to save my life.

And why should my life be saved? I don’t have an answer.
I am only forty-five. I guess that would be my answer.
I am only forty-five and I was born and raised in the wealthy, white suburbs of Chicago and the white Boomers who raised me are seemingly living well and easily into their 80s and 90s while my generation, and those generations after mine, fight for scraps of this country, and hope the planet, a planet currently on fire, can be saved so that we might have enough water for at least another hundred years.

Those are the real demons I, and every other Gen-X woman who chose a path that didn’t include men, marriage (I did eventually get married, but to a woman) or children or houses in the suburbs, fight with every day of my American life.

I am a queer, “middle-aged”*woman with stage 4 metastatic breast cancer. I would be lying if I didn’t say it positively takes my breath away every time I write or speak that fact.

*Let’s be honest. I am more likely in my “Golden Years” than “middle-aged” at this juncture in my health history.*

Two days ago, I turned forty-five.
Given my many medical “priors,” 45 not only feels like a gift, but also a miracle.

Being the greedy thing I am, I do wish to see fifty, but that is not up to me entirely.

Every day of my life, I am learning to live with fear.
Particularly fear of all the things I do not know, will not know, and cannot know until they are revealed to me — which, in some cases, they may never be.

Stage 4, metastatic disease used to be my greatest fear.
My surgeon, who I swear is some kind of force of nature, some kind of Buddha, some goddess on Earth, said to me, the day of my diagnosis, “You’ve been waiting a long time for this shoe to drop.” She said it so matter-of-factly like she knew my mind. And she was 100% correct. I had been fearing recurrence since I was first diagnosed and treated in 2011. Every day of my life for ten years, I thought of cancer and feared a recurrence.
And for what?

The recurrence came, as I somehow knew it would.

The recurrence came at an inopportune time — just before the pandemic — but really, is there an “opportune time” to hear those awful words?

You have stage 4 cancer.

I cannot conceive of a time in my life that would be “opportune” for that shit news.

My birthday? The first day of school? While I was having a good cup of coffee on a rainy day?

Frequent readers of this “blog” (not sure what to call it) will know I struggle terribly with insomnia.

My insomnia problems are not new, but date back to 1980 when my poor mother had to run around to brick & mortar bookstores in search of a book for her 4 year old who could read, but not sleep.

Typically, what I do now to get to sleep is take some cannabis and get in bed with a movie.

Last night, I watched the documentary on Tina Turner.

If Tina Turner isn’t a national treasure, then I just don’t know what a national treasure is.

What a force of nature.
What a badass.
When she left her tormentor, she did so in one fell swoop, guided there by Buddhism and a newfound sense of self worth.
I can dig that.
Or to reference a scene from the documentary,
“I can jog on that.”

Present-day Tina Turner is very serene, very self-assured, remarkable.
Not that one would expect anything less from her.
But at several moments in the film, she calmly told the interviewer she was not interested in dwelling on unhappiness/unpleasant memories.

Because my wife was sleeping beside me,
I had to stifle a “Fuck yeah!”
and instead pumped my fist in the dark of the bedroom.

I, too, do not want to dwell on unhappiness.
Particularly the unhappiness of the past, of which there has been plenty.

There was a line in Jaffe’s article that punched me in the gut.
Without revisiting the article (I’m on a time crunch this morning),
it was something to the effect of “I’m not sick now, but I know that’s coming.”

Yes, that.
Punched me in the gut.
That’s my story, too.
That is a terrifying reality that I, and other women like me, live with.
Barring a meteor, a sudden heart attack, an act of human violence or god,
I have formulated a sound hypothesis as to how I will die and it does involve breast cancer.

But I don’t really know, do I?
In my Buddhist practices, in my recovery practices, I try to focus on “one moment at a time,” particularly when I’m feeling frightened.
Feeling frightened is a huge part, in my experience, of being chronically sick in America.

A lot has changed in the American healthcare system since I was first being treated for cancer in 2011.

Some things have gotten better,
and a lot of things have gotten worse.
For example, when I was being treated in 2011,
I had a nurse navigator who was able to schedule
and coordinate all my appointments. All I had to do was show up. Now? Though I technically had a nurse navigator with my last American Healthcare Provider, she was too overloaded, too busy with other patients, to possibly, reasonably, schedule and coordinate the myriad appointments a woman with MBC must make and stay on top of in order to adequately treat her disease. (And I’m not even talking “fancy” treatments. I get standard-of-care, yo. I’m no senator, no CEO, no celeb.)

With regard to appointments? I feel utterly on my own now.
Most days, I feel like I’m free falling through the American Healthcare Machine, slamming down on awnings here and there that provide brief,
very welcome, pauses in my descent.

Right now, I am between oncologists.
That is a terrifying space to occupy.
No one, and I mean no one is watching out for me
in The American Healthcare System. I have to fight that fight
while living a life that, for me, feels worth living.

That means I have to be in education, I have to be writing, I have to be spending time with friends.

I cannot spend my whole life on the phone scheduling appointments.

Let me amend that: I refuse to spend my whole life on the phone scheduling appointments.

Every time I am on hold with a pharmacy, a doctor’s office, a radiology department (and I’m on hold a lot), I swell with dark resentment:

I am wasting precious moments of my fragile life listening to generic, slightly distorted, smooth jazz on my phone.

I resent this.

On a regular day, scheduling appointments, following up to make sure record were sent to the appropriate people, to make sure my medication will arrive when I need it — feels not just like an unpaid job, but like an insult.

All this added suffering to my American life & for what?
Because I had the dumb luck to be born female.
Because I had the dumb luck to get cancer early in life — not once, but twice.

If you don’t already know, allow me to tell you what no one told me before this medical catastrophe hit for a second time:
Times have changed.
They will not be nice to you just because
you have a serious, incurable, deadly illness.
Put your fightin’ pants on pronto.

I wasn’t ready to fight in November 2019,
when I first found the mass in my back that would — some months later — finally be dx’d as recurrent breast cancer, of the same variety I had been treated for ten years prior.
I wasn’t ready.
I was trying to finish my second book (out with Tolsun Books in November!), trying to teach my classes, work with my students, spend time with my wife and my friends.

Sarah and I had a whole, actual life in Flagstaff.
I was relatively comfortable there, and nothing I had experienced in that beautiful mountain city had prepared me for the harsh reality of being a cancer patient in Trump’s America, in the “new” America — where even cancer treatment had gone full tilt corporate.

Today I ask God for mercy.

Mercy from fear.
Mercy from fear of the many, many things I do not, cannot, and may never know.

And with that, I leave you to a day that, I hope, at the very least,
brings you mercy.