What Mt. St Helens Taught Me About Life After a Disaster

 

Forty years ago today, Mt. St Helens exploded.  I heard and felt the blast at my home 150 miles away in Tacoma. I could see the 15-mile-high cloud of ash from my front yard. I saw the lahar in real time on the evening news as a house rammed into a bridge over the I-5 freeway. I spoke to a friend in Pullman, Washington, as her day turned to night at Washington State University, just days before she graduated.

The true impact of the eruption and the losses were discovered in the following weeks. A vulcanologist tending instruments near the crater had died shortly after warning, “Vancouver, Vancouver, this is it.” Half-buried vehicles were found on the mountainside.  Forests had been flattened, with sturdy fir trees snapped off like toothpicks six feet above the ground. Spirit Lake on the side of the mountain, as well as Spirit Lake Lodge and its caretaker 80-year-old Harry Truman, had vanished. A total of 57 people died. The Toutle River, which flows from glaciers on the mountain, was clogged with mud and logs all the way to the Columbia River, obstructing boats and barges. The I-5 between Seattle and Portland was closed for weeks for cleanup and safety inspections. The entire area looked more barren than a moonscape. The devastation was unimaginable.

Yet, even a few years later, life returned to the mountain. Flowers bloomed.  Animals roamed through the ash. A new Spirit Lake began to form, and frogs that had been buried alive under scalding ash re-emerged, alive and kicking. Communities that had been desolated by the eruption and its aftermath came together, supported each other, and received assistance from neighbors outside the blast zone.

That was my first major disaster. It taught me that life goes on, nature finds a way, and silver linings can be found. I have some beautiful pieces of art created from Mt St Helens ash–they are unique reminders that the world does not end because major change occurs. The poster above hangs on my wall to commemorate.

Since then, I have coped with various disasters–parents stricken by dementia, a metastatic lung cancer diagnosis, and now COVID-19. Each of these rocked my world. But life goes on, and even in disaster, beauty can be found. We must be willing to adapt, to care for one another, to find a way.

When life kicks your ash, make beauty.

My 9th Cancerversary–Adapting to a changing landscape

Today is my 9-year cancerversary.

I was diagnosed in 2011 with Stage 3a NSCLC, and progressed to stage 4 after first line chemo-radiation. Progressed again after 2nd line treatment (different chemo and more radiation). Then I tested positive for ROS1, enrolled in the crizotinib clinical trial in November 2012, and have had no evidence of disease on scans ever since, with manageable side effects.

A few months after starting the clinical trial, I felt well enough to think about what’s next.  I was grateful for surviving thus far, and wanted to make a difference. In 2013 I found my purpose: I became a patient advocate, and over the years evolved into a research advocate. My time is spent on The ROS1ders (a global group of ROS1+ patients and caregivers that strives to improve outcomes for all ROS1+ cancers), the IASLC STARS program (to develop new lung cancer research advocates), collaborative cancer advocacy, and translating science for others.

Apparently living well with lung cancer and having a purpose was not enough. The ‘verse decided more character building was needed. Like everyone else, I am now learning to adapt to life during a pandemic.  The whole world is now experiencing what we metastatic lung cancer patients live every day:

  • A deadly disease with no cure
  • Cumulative, sometimes overwhelming losses
  • The fear of not knowing when death will come for you or strike someone you love.

I hope someday every ROS1+ positive cancer patient, every lung cancer patient, every cancer patient will have a cure.

I hope the world will soon have effective treatments and a vaccine for COVID-19 .

I hope our healthcare providers and systems survive the upheaval.

I hope our economy recovers swiftly.

I hope more people recognize the power and value of science, working together, and compassion for one another.

I hope I live long enough to see it.

 

Time for more kitty snuggles.

Lung cancer survival is looking UP — WAY up

This chart from the NCI’s SEER database shows the five-year survival for lung cancer. Note the awesome upward trend.  Survival increased to 19.4% in 2015.

This doesn’t seem like a bit improvement until you think about what it reflects. The year 2015 was only four years after the FDA approved the first targeted therapy for ALK-positive non-small cell lung cancer (the first of MANY targeted  therapy approvals), and the first year the FDA approved any immunotherapy for lung cancer (as of today, four immunotherapies have been approved for lung cancer).  That means the 19.4% survival in 2015 doesn’t yet reflect ANY of the improved survivals from targeted therapy or immunotherapy (except some patients on Tarceva who happened to have EGFR-positive lung cancer).

Edit to add:  Lung cancer screening for high-risk groups began AFTER 2015, which means we’ll be catching more lung cancers in early stages, when they are curable.

Imagine where this curve will go by 2020! Go cancer research!

You can find the data for this chart here.

Median survival for metastatic ALK+ lung cancer can be more than SIX YEARS!

Finally! A published study offers proof that metastatic ALK+ lung cancer patients can live for YEARS thanks to targeted therapies.

This is phenomenal, considering that in 2011 (the year crizotinib was approved in the US for ALK+ non-small cell lung cancer, or ALK+ NSCLC) , the US SEER database listed average survival for metastatic non-small cell lung cancer at less than one year.

In this study of 110 patients at University of Colorado (one of the sites in the original clinical trial of crizotinib for ALK+ NSCLC), the median overall survival time from diagnosis of stage IV disease was 81 months. That’s 6.8 years.

Over six YEARS of survival.  Woohoo!  Note that this median survival (when 50% of the group remains alive) will be even longer for patients diagnosed after 2011, when crizotinib was approved.

Besides finding patients with stage IV ALK-positive NSCLC can have prolonged overall survival, the study also found:

  • Brain metastases at diagnosis of stage IV disease does not influence overall survival. (Wow. Brain mets aren’t an automatic death sentence.)
  • Having more organs involved with tumor at stage IV presentation is associated with worse outcomes. (Bummer, but we can work on that.)
  • Prolonged benefit from pemetrexed chemo is associated with better outcomes (some patients in the study had chemo before or after a targeted therapy). 

Yay for cancer research that is helping more lung cancer patients live longer!  You can read the complete article here.

Natural History and Factors Associated with Overall Survival in Stage IV ALK-Rearranged Non–Small Cell Lung Cancer
Jose M. Pacheco, MD et al, University of Colorado Cancer Center

When am I old enough to die?

This Photo by Unknown Author is licensed under CC BY-SA

Barbara Ehrenreich’s new book has a title that makes a much-needed point: Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer.   

As a metastatic cancer patient, this resonates with me.  The fact is, people die. Nothing can change that–not doctors, not preventative check-ups, not healthy living. NOTHING. Our bodies have built-in components that can cause disease (cancer being one) and tissue breakdown.  All living things will eventually wear out and reach a natural end, like the potato in image above.

The Western World is so obsessed with not dying that we sometimes forget to live. Knowing how best to keep our bodies healthy is important, but at some advanced age we should stop worrying about lifestyle elements that aren’t perfectly healthful, stop intrusive testing for things that **might** kill us, and just focus on living as well as we can given our circumstances.

Ms Ehrenreich excerpted parts of the book in her article in The Guardian 31-Mar-2018. In it, she addresses society’s compulsive need to blame someone for dying. Did they eat the wrong things? Drink too much? Exercise too little? Smoke? Stress over work?  Essentially, it’s the same issue we wrangle with lung cancer stigma, but applied to all health conditions.  Why does dying have to be someone’s fault? Reality is, we’re all going to die of something.

Another article in the Guardian interviewed Ms Ehrenreich about her perspective.  It starts with, “Four years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life. While she would seek help for an urgent health issue, she wouldn’t look for problems.”

Those sentiments reflect my own thinking nowadays.  I recently had several preventative health appointments: annual physical, Hep C screening, 3D mammogram, gynecological exam, and colonoscopy. Some of the procedures  seem reasonable: for instance, a new vaccine can prevent more types of pneumonia (I know from experience that pneumonia reduces my quality of life), and having a polyp snipped is an effective and painless way to prevent colon cancer. However, I wonder if I should be spending money (mine as well as the insurance company’s) to undergo screening for cancers other than the one I’ve already got, given that I’m not sure I would undergo aggressive treatment for whatever they might find.  Chances are, my metastatic lung cancer will eventually recur, and sooner rather than later.  If the colonoscopy had detected advanced colon cancer, and my only option to treat it was radical surgery to remove a section of my colon, I’m not sure I’d do it given my lung cancer is not cured. If I have limited life remaining, why would I spend it recovering from a significant surgery that can’t cure me?

Each person will have their own answer to the question, “Am I old enough to die?” because each has their own set of priorities. I know some terminal cancer patients who would subject themselves to any level of discomfort in order to have more time with their small children. Others would find life is not worth living if they were unable to walk in the woods every day. Whether or not to undergo a cancer treatment should an individual’s decision based on personal priorities, overall health, effectiveness and quality of life impact of available treatments, and cost.  But at some point, regardless of our priorities or treatment decisions, death wins.  Many of us waste a lot of time, energy, and resources denying that fact.

For my two cents, Barbara Ehrenreich gets it right. I hope people listen to her and consider changing their perspective on life and death. It could make a big difference in their quality of life, and perhaps in the overall burden of healthcare costs as well.

I’m going to eat some chocolate now.

REFERENCES

Why are the poor blamed and shamed for their deaths?  (Barbara Ehrenreich, The Guardian, 31-Mar-2018)
https://www.theguardian.com/lifeandstyle/2018/mar/31/why-poor-blamed-shamed-their-deaths-barbara-ehrenreich

When do you know you’re old enough to die? Barbara Ehrenreich has some answers  (Lucy Rock, The Guardian, 7-Apr-2018)
https://www.theguardian.com/lifeandstyle/2018/apr/07/barbara-ehrenreich-natural-causes-book-old-enough-to-die?

Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer  by Barbara Ehrenreich, available 10-Apr-2018 on Amazon.

 

Farewell, Stephen Hawking, and thanks

Physicist Stephen Hawking died yesterday at age 76. As a science geek, I was awed by his amazing intellect and ability to explain difficult science clearly. As a metastatic cancer patient, I admired how he made the most of life despite a crippling health condition and grim prognosis.

Below is reprint of a Facebook post (with permission) by feisty science fiction author Pat Cadigan, a friend and ovarian cancer patient. She also knows about making the most of life.

——

I never met Stephen Hawking, exactly. One day, I was in Covent Garden and as I walked along a sidewalk, two carers were getting him out of a specially-equipped van. I felt it would be inappropriate to stop and gush—the carers were in the act and I would have been interrupting. So I kept going—but I gave him a great big I-know-who-you-are-and-I-think-you’re-great smile. I like to think I saw a twinkle in his eye. I smiled at the carers, too, and they smiled back at me.

(Sometimes I think that they smiled at me because I didn’t look like I was pitying Prof. Hawking.)

When Stephen Hawking was diagnosed with motor neurone disease, he was given two years to live. He spun those two years into nearly half a century. This is practically unheard-of for people with motor neurone disease—it is a terrible, merciless condition that, at the time Hawking developed it, was not even as treatable as cancer. 76 is still too young an age to leave the building; I really hoped he would stay longer.

But while he was here, he made it count, even though he was unable to move, and then unable to speak for most of his life. His mind was lively, energetic, indomitable. He defied his circumstances and his prognosis. Hell, he even left his wife for his nurse—probably not his finest hour, but the heart wants what it wants, even when it’s confined to a wheelchair, unable to speak.

Most of us never achieve Hawking’s level of intellectual brilliance. But we can all try to ‘defy our prognosis,’ so to speak. We can confound expectations. We can make every moment count. We don’t have to accept what we’re told to accept. We don’t have to settle.

Maybe we won’t succeed in defying our prognosis, so to speak. But if we don’t try, we’ll never know.

You don’t have to lie down quietly. Even if you’re paralysed, you can go down swinging.

Finding Myself in Antiquity

Wonder why I’ve been relatively quiet online recently? I just returned from a 15-day “Cities of Antiquity” cruise in the Mediterranean aboard the Viking Star. This trip gave me a much-needed mental health break–I actually spent two whole weeks on something other than lung cancer (though I did sneak online for 10-20 minutes several days).

Since I was still rehabbing my foot, I used trekking poles on walking tours and my knee roller on the ship to avoid overdoing. My left foot did not swell or turn blue even on days when my fitbit clocked over 10,000 steps. The tours gave me the most exercise I’ve had in six months, which is probably why I didn’t gain any weight on the trip despite the abundance of food, tempting desserts, and wide variety of gelato flavors.

Lots of perspective and leasons learned to be found in other cultures’ 3000+ years of history.  We visited Athens, some Greek islands (among them Mikonos and Rhodes), Cyprus, Israel (Jerusalem, Nazareth, and the Sea of Galilee), Naples, Pompeii, and Rome. It was well worth yesterday’s 29-hour travel day (Rome to Seattle) and the upper respiratory infection that followed me home.

More pictures to come.