CANCER, DIAGNOSIS, LIFE EXPECTANCY, METASTATIC BREAST CANCER, PROGNOSIS

MORE LIFE EXPECTANCY, NOT NECESSARILY MORE LIFE

If you read “Life Expectancy,” my first post on this blog, you know that I was diagnosed with Metastatic Breast Cancer.  That was in late July of 2018. In early August 2018, on our way to what Dr. Dear, my oncologist, called a “next step” appointment, I made a pledge—aloud to my sister, Angela—not to ask for a prognosis. (That is, not to ask how many years, or—gulp—months, I might have left to live.) 

🖤

I have no need to pledge that I won’t let Dr. Dear give me a prognosis.  She doesn’t offer a prognosis at the “next step” appointment (in a word, the “next step” is chemo), and she doesn’t offer a prognosis after that. It seems Dr. Dear is too dear to put a time stamp on a death sentence if she doesn’t have to. And, Angela and I conjecture, Dr. Dear may be one of those doctors Angela told me about: the ones trying not to give old-fashioned prognoses anymore. 

Anyway, studies show doctors tend to overestimate their patients’ life expectancy.

I know because Angela told me so…

… and also because—that night in August 2018? The night of the day of the “next step” appointment with Dr. Dear? The night of the day when I make the pledge not to ask for a prognosis? That night turns out to be the night I start Googling the topic every chance I get. That night, lying beside Dreamboat, in our dark bedroom—listening to his familiar, beloved snoring—I pick my cell phone off the nightstand and I start hitting Search on every prognosis-related keyword I can think of. Metastatic Breast Cancer prognosis… prediction… estimate...

I go on like this for months. Late at night. August, September… Or when no one else is home. October… Or when I’m supposed to be napping. November… I don’t tell Angela. I certainly don’t tell Dreamboat. It’s my little secret: the search for my date of death.

I get hooked on two Metastatic Breast Cancer life expectancy items of information that appear consistently in magazines, websites, and research papers. 

Internet Prognosis No. 1

A yellow legal pad with writing showing 27% go to 5 years go to smily face. Years listed are 2018, 2019, 2020, 2021, and 2022.
5-year prognosis

The first of these virtual prognoses asserts that 27% of women with Metastatic Breast Cancer will live for five years

Five years! Terminal-illnessly-speaking, five years seem like a bunch of mother-loving years! Don’t get me wrong. I’m 59-years-old; I know a lot of women my age who are planning to live another twenty/thirty years or more. But with this cancer colonizing the territories of my insides, I’m thrilled to think I might hold the reaper at bay for five whole years.

With five years at her service, a person could get her PhD in… something.

Or! She could organize the family photographs. 

Also! Five years is enough time to learn French and, with the help of her utterly-charming-bit-of-French-speaking Dreamboat, rent a cottage in Provence and throw a big party in honor of her longevity. She could invite all her friends from America pour célébrer avec moi. 

Hopefully all of her friends are not from her Metastatic Breast Cancer Support Group, however. Because, by the time she throws her party, 73% of those ladies will be… Dead.

I have already been in the small percentage cohort several times: the small percentage of breast cancer survivors who get a cancer recurrence (6% within five years of initial diagnosis) and the small percentage of breast cancer survivors whose cancer goes metastatic (10% within fifteen years of initial diagnosis). I wonder if I could possibly be lucky enough to find myself in the small percentage—the 27%—of those living with Metastatic Breast Cancer who live at least five years. Or is this where the tide turns, and I get washed up with 73% of the terminal cancer flotsam?

Internet Prognosis No. 2

Another legal pad with writing about the patient's first shoulder pain through cancer diagnosis. It says, Pain, Dearie. Then it lists months Dec, 2017, Jan 2018, Feb. 2018, March 2018, April 2018, May 2018, June 2018. July 2018 is circled several times and underlined. It has rays coming out of the circle, which may represent sunshine, or pain.
My cancer diagnosis timeline

So, here is the second virtual prognosis: it reveals that the latest median life expectancy for a woman with metastatic breast cancer is 29 months. Twenty-nine months. That’s two years and five months and, hard to believe, even that can sound like real time now. At least, until I understand the meaning of the word median, that is.

Remember way back in seventh grade when your math teacher tried to teach you the variety of averages expressed as range, mean, mode, and median? 

Me, in seventh grade: “Teacher, when am I ever going to use the median average in real life?”

Teacher: “Why, in about forty-six years–when you have metastatic breast cancer, of course, Dearie.”

(Okay, that never happened. My seventh-grade math teacher was a nun who hated me with good reason. She never once called me Dearie.)

Like most of you, I’ve forgotten everything I learned in seventh grade. I have to Google median too.

A median of 29 months means that half the women in the study lived longer than 29 months. Maybe years and years longer. Maybe just a day.

The other half lived less than 29 months. Maybe a little less: say, 28 months and 29 days. 

Maybe a lot less: zero months and 29 days. 

…Or nine days. 

…Or one, single, day.

Half of the approximately 150,000 Americans who have metastatic breast cancer will live at least 29 months. Half won’t. 

Which half am I in, I wonder, AND—when do we start counting?

When COULD we start counting? In mid-December of 2017, I woke up one morning with a pain in my left shoulder. I’ll tell you more about that in a future blog post, but I know the pain started in mid-December 2017 because, by Christmas Day 2017, that pain in my shoulder had become an unforgettably familiar pain-in-the-ass. My daughter, Progeny, and Adorável, her adorable then-fiancé, came over for Christmas brunch: Smoked-Salmon Eggs Benedict made with Dreamboat’s sumptuous Hollandaise; Country Potatoes; Winter Fruit Salad. Wrapped packages sat under the Christmas tree, waiting to be opened; jazzy Christmas carols played over the Sonos; and—even though Dreamboat was home—the furnace was on, burning dollars to keep us all warm and cozy. Here’s what I was thinking: Will everybody please go home—including Dreamboat: go to somebody else’s home—so I can slide from this dining room chair onto my back, on the floor, right now, and cry for a very long time? Because my shoulder MOTHERFUCKING HURTS!

Then, it took my doctors (many doctors, many nurses, too) seven months, and the total loss of function in my left arm, to find the Metastatic Breast Cancer tumor in my agonized left shoulder. Dr. Dear found it, in July 2018.

Quick Review

Another legal pad notation. This one lists 2018, Jan through Dec. with the number 12 circled. The next line shows 2019, Jan. through Dec with the number 12 circled. The next lines shows Plus 2020: and several months listed line-by-line: Jan., Feb., March, April, May. The two 12s are added to make 24, also circled, with an arrow down to the line that says May, where the number 29 is circled. Next to 29 are the letters R.I.P.
Twenty-nine months

In August 2018—with Angela pledged to prevent me from asking how long Dr. Dear thinks I’ll live—I begin the Secret Metastatic Breast Cancer Prognosis Googling Project. 

In September/October 2018, I track down Internet Prognosis No. 1: the unsatisfyingly small percentage of Metastatic Breast Cancer survivors who live five years. 

In November 2018, I’m on to Internet Prognosis No. 2: the median life expectancy of 29 months. 

Again, when do we start counting? 

If we count from the first pain I remember—mid-December 2017—and toss that month out because, well—be generous with me, won’t you? —it wasn’t a whole month… then let’s just put the 12 months of 2018 on the scale. Add all of 2019. Plus the remaining five months: Jan, Feb, March, April, and May of 2020.

My time on this earth is roughly equivalent to the time left on my San Francisco Museum of Modern Art membership (expiration, May 2020). 

I will not outlive my driver’s license (expiration, September 2020). 

The can of Amy’s Vegetarian Organic Refried Beans which, at the end of November 2018, is among a shopping bag of things we buy for Angela, hoping to entice her to stay or, at least return soon, though she has her own home on the other side of the country and she has been helping us for four months, and she has bought her ticket to leave in three days—that can of Amy’s Vegetarian Organic Refried Beans is stamped “BEST BEFORE 02/2021.”  Widower Dreamboat, scrounging in the cupboards for something he can turn into dinner, will have a good nine months, after I’m gone, to settle for the vegetarian beans. 

Health Insurance Prognosis No. WTF

But it’s early December 2018 and Angela is gone. Of my 29 months, I secretly believe, I have 17 remaining. Then my insurance denies a request for a certain chemotherapy drug. The denial letter includes an appeal form with instructions for the doctor to complete it if the patient has less than 12 months to live. When I show the letter and the appeal form to Dr. Dear, she says, “Don’t worry. I can take care of that for you.” Dr. Dear keeps the appeal form and I get a letter two weeks later saying the insurance approved the chemotherapy drug after all. 

Huh. Now I have, not 17 months, but 12 months—less than 12 months—to live. 

It’s time to talk this over with the person I tell all my secrets to. When Dreamboat comes home from work, I am waiting. I wrangle him into his mancave, ask him to sit down, and… suggest he choose a movie for us to watch together this evening. Any movie. Yes, even The Magnificent Seven. I say, “I’ll be back in half an hour, Baby. We’ll throw together some dinner and watch your movie-of-choice. I just need to chat with my sister first. I can’t imagine what it is she needs to talk about.”

In her home, on the east coast, Angela is done with grandma duties for the day. “Remember when I said I didn’t want a prognosis?” I ask her. “I’ve been googling like a…”

“So have I!” Angela answers.

“So, you know about the 27% of five years?” I ask. 

“Yes,” Angela says, “and the median life expectancy of 29 months.” 

It’s a delight to be in each other’s confidence again. Then I tell Angela about the health insurance appeal that only works if the patient has less than 12 months. I say, “Weird, huh?”

Maybe three seconds later, my sister responds. “Yeah, weird.“ Then she goes on, “Dr. Dear probably filled out the form however she had to fill out the form, to get you the chemo you need. If I were you, I’m sure I would do the same thing you’ve been doing. I would Google, and count the months under various scenarios, and worry. But you said you didn’t want a prognosis and you were right.”

My sister’s voice is warm like jazzy Christmas carols, but I’m still listening to the silence between my “weird” and her “weird”—where the truth we both know is ring-a-ling-linging.

Dr. Dear has given me a prognosis. Twelve months. Or less.

The Thing About Cancer

That was in December 2018. It’s April 2019 now.

And, because it’s something I can do, out here in the world-wide-web, where things last longer even than they should, I will write this blog. If you’ve read this far, you have a sense of what I’m offering: the open-eyed, under-a-death-sentence-without-a-pink-ribbon version of life with Metastatic Breast Cancer. Of life with twelve months or less. Or more. Or less.

The thing about cancer is, living with it is so ghastly/frustrating/absurd, it can be funny. I mean noir-funny. Okay. But funny.

Another thing about cancer is, it kills a lot of people and it’s gonna kill me. 

When?

3 thoughts on “MORE LIFE EXPECTANCY, NOT NECESSARILY MORE LIFE

  1. Courageous as usual, and again so stunningly well crafted. That Reaper’s breath stinks, but you stand up, look him straight in the eye.
    I can imagine your pieces giving solace and patience to others in almost any of the statistical groupings you describe. Keep at it.

  2. I’ll be the first one to tell the Insurance Company, what they want to hear and get my meds. Your Dr. Dear did.
    Time is?????? Blanck.
    We all need to live life to the max, enjoy every day . Love love ❤️

  3. This is so sobering and beautiful. I do better with bold faced truth than denial or coverup or avoidance. The time to process loss is now. And to live while you can. I love the way you explain such a difficult and complex thing as cancer especially in the grip of it. Thank you for taking your time to share this precious information. Your writing is powerful and clear. Xoxox Jane

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