August 4, 2021

My current cancer project, aside from remembering to take my medication, is building a new normal. It sounds straightforward: tweak some of the specific things you do in your life: diet, exercise, sleep, and then keep putting one foot in front of the other.

However, I’m finding it to be much more nuanced. In fact, it’s more like a geological expedition deep into the soul. There, the elemental things I have known about myself are like the plates that form the crust of the earth. And those plates are moving and shifting in ways I never anticipated.

The National Park Service tells us that “…Earth’s internal processes can move large plates of Earth’s outer shell great horizontal distances. Plate tectonics thus provides ‘the big picture’ of geology; it explains how mountain ranges, earthquakes, volcanoes, shorelines, and other features tend to form where the moving plates interact along their boundaries.”

Plates typically move at the rate of a few centimeters a year, about the same rate as fingernails grow. Unless, of course, you get cancer. Things tend to move faster then.

It was several weeks before I got up the nerve to look at lung cancer survival statistics. They are grim. It’s taken a lot of thinking and processing to come to realize that they can provide a useful frame for thinking about the New Normal while, at the same time– and this is critical– not preordaining a timeline or endpoint I must conform to. Because, if I do, in fact, have 3-5 years to live, then I get to make some very conscious choices about how I want to live these years. Not just what I want to do, but how I want to be.

Here are some of the questions rolling in the back of my mind. Where do I want to put my attention? What beliefs or practices matter most? Where does joy live? Do I have obligations to society, and if so, what are they– how much time do they deserve or need?

There are other questions I may not even be aware of, but these are the ones that surface now.

I believe I’ve made one decision. Although Oregon schools are slated to open again in person in September, I will not go into them. Thus, my work with teacher candidates will likely close. Not long ago, I would have refused to consider this. Today it feels like a no-brainer.

Does that mean I am relinquishing the field of education? Beats me. To even say that– and mean it– is a new way of being in the world for me. I have not been a go-with-the-flow kind of person. I decide, then I push ahead. (I believe this might be called willfulness, perhaps even ego.)

Every day brings a different physical state and the day unfolds from there. Sometimes it is not easy; each day, I have a different amount of bandwidth for…everything. I’m still cranky and angry sometimes and that makes me hard to live with, I know. But on the worst days, I am trying to keep myself in my own little corner. Or, I’m just selfish enough to be a short-tempered bitch.

Because here’s the stuff that I think about each day. I am really, really lucky. I have really good medical care. I am financially secure. I have a home I love. I have a support network that is unbelievable. I have done good work and will have the chance to do more. I love and am beloved.

And within all these parameters, I have the unbelievable privilege of being able to make choices.

Now all I have to do is live into the ones that matter most– a prospect that feels both daunting and audacious.

Thanks for reading.

Antelope Canyon image by PatternPictures from Pixabay

Time image by TaniaRose from Pixabay

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A Look at Life Expectancy Stats (with a Few Complaints)

The life expectancy statistics for lung cancer S U C K. I’ve included information direct from two websites, the American Cancer Society and the American Lung Association.

From the website of the American Cancer Society:

Keep in mind that survival rates are estimates and are often based on previous outcomes of large numbers of people who had a specific cancer, but they can’t predict what will happen in any particular person’s case. 

What is a 5-year relative survival rate?

A relative survival rate compares people with the same type and stage of cancer to people in the overall population. For example, if the 5-year relative survival rate for a specific stage of lung cancer is 60%, it means that people who have that cancer are, on average, about 60% as likely as people who don’t have that cancer to live for at least 5 years after being diagnosed.

Where do these numbers come from?

The American Cancer Society relies on information from the SEER* database, maintained by the National Cancer Institute (NCI), to provide survival statistics for different types of cancer.

The SEER database tracks 5-year relative survival rates for non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC) in the United States, based on how far the cancer has spread. The SEER database… groups cancers into localized, regional, and distant stages:

• Localized: There is no sign that the cancer has spread outside of the lung.
• Regional: The cancer has spread outside the lung to nearby structures or lymph nodes.  [This is my situation.]
• Distant: The cancer has spread to distant parts of the body, such as the brain, bones, liver, or the other lung.

May we have the numbers please?

 

[Dark humor alert here] The difference between the way the American Cancer Society and the American Lung Association handle survivor statistics cracks me up. The Cancer Society pads the stats with all kinds of supportive language; they encourage you to talk with your doctor, etc. etc. The Lung Association? See for yourself.

Let’s spend a minute on why the Lung Association’s presentation of stats, above, in my not-so-humble opinion, verges on the irresponsible.

Look at the first bullet point. This is not only a real bummer, it could also inspire hopelessness. Hopelessness makes it very hard to feel you have any control over addressing the disease that is invading you. The crappy statistic (18.6%) is much much lower than many of the SEER numbers, above,  and they don’t tell you how they arrive at that number. 

They also don’t tell you that the other three cancers have been under study for much longer and thus have more treatment options and that lung cancer research is exploding with new findings every day. My little perspective here is not not some hokey way of sugar-coating “facts.” It’s just another lens through which to view a particular set of numbers.

Second bullet. It is easier to walk away from this with an impression than with specific pieces of data, and that impression is gruesome. Impression: You’re gonna die. Facts? Much harder to tease out from the way they are presented here. Only 16% of lung cancer patients are diagnosed early enough in the disease progression that half of them are alive after five years? That sucks. Oh, and everyone else? You’re gonna die. 

Third bullet. You’re gonna die. 

Why on earth would an organization present information in such a way? My guess is that they’re going for the big research bucks. The worse the statistics, the better the case for funding.

The most important points for me? The numbers are descriptive, not predictive. Could I be dead of lung cancer in x days, y months, z years? Sure.

Could I be dead of anything else in the same time span? Of course.  And, I reject the statistics as a prescription for the way or when my life will end.

Image by Gerd Altmann from Pixabay