Insecurity is MY Super Power

CancerLand is expanding --Today's Wall Street Journal

The doors of CancerLand thrown open. A great article in today's Wall Street Journal by Siddhartha Mukherjee--author of the bestseller: "The Emperor of All Maladies." one of the greatest books about cancer.

Take a moment to read this, and but more chairs--CancerLand is expanding.

Here's the link: https://www.wsj.com/articles/will-we-all-soon-live-in-cancerland-11639757322

Losing the Tiny Bits of Love

This morning I had “safe coffee” with a friend. 

 Safe coffee is one of our new practices where to be COVID safe we have coffee with a friend—outdoors, masked and six feet apart. Weird? Yes. Awkward? For sure. Better than nothing? Absolutely. This is social life in the time of COVID. 

 What I realized today is that many of us have moved from never leaving our homes, to waving across the street, to establishing safe pods with family, to now venturing further and seeing extended family in the backyard or seeing a good friend for coffee or lunch. It’s a select team. We are careful, and we are making choices. 

 It’s rich and a thrill compared to March, but we are still missing so much. What we talked about today was the realization that while we do see those closest to us now, we are missing acquaintances. Acquaintances are out. People in passing are out. Know what I mean? Think about it. 

 Yes, we are hugging our immediate family, dining with extended family, having coffee with a good friend and looking at them across the table. That’s a lot of goodness and a goodly amount of affection. But in our past lives (before March 2020) that’s not where all of our social life came from. 

Before that big quarantine and COVID scare hit all of us we had an enormous amount of people contact everyday even if we didn’t “do” anything with loved ones. We chatted with neighbors, stood in parking lots and caught up with folks after church, we ran into people we knew in stores and at the post office. 

If pressed we would not have said that any of those people were our friends, but they were in and out of our lives, and we were in and out of theirs. What we got from those hundreds of small encounters were bits of love and affection: handshakes, hugs (back when we hugged the way we shook hands) and we also looked at each other. We had seconds or minutes to really see each other. We affirmed their human presence and they affirmed ours. 

 Yes, we are Zooming. I can see your new haircut and I can complement you. You can see the art in my kitchen and ask about it. But all those mini, daily, tiny bits of love and affirmation are gone. 

And it is not crazy to miss them or grieve them.

Life Changes Fast

Life changes fast. It’s one of those things that we understand intellectually but don’t fully grasp until something big happens. Those of us in CancerLand know this. 

We have at least one memory of a perfectly fine day—until the phone rang, or until the doc came back into the room, or until a nurse said, “The doctor would like you to stay for a few more minutes.”

 

Many years ago, on September 11^th in 2001 we all got it.  Then again in 2005 with the Indonesian Tsunami. Then in 2012 with the shooting at Sandy Creek Elementary School.

 

Those incidents were huge, but now they seem to come faster: a shooter, a bomb, a natural disaster. But the aftereffect doesn’t stay with us as long each time. It’s as if there is a half-life of consciousness after having a couple of these “Life is short” experiences.

 

That is true in CancerLand as well—now we brace ourselves for the next news, the next scan, the next colonoscopy or mammogram. We have quiet, whispered conversations with ourselves that go like this, “OK, if this is bad news I’m going to go to Paris first.” Or “If this is bad news I won’t tell anyone for a week—I have to sort it out myself.”

We know that bad things happen in the greater world too. 

We keep reading about how life makes these sudden shifts for other people.

 

We know it happens more frequently in other countries—and in places where people don’t look and sound like us. But when it happens in Colorado, Connecticut, Arizona or Ohio-- places where the skin tones and consonants are more like ours, we get it again, and fast. 

 

As much as we believe that life follows rules like, “What you put in is what you’ll get out,” we are shown again and again that planning denies life’s absolute uncertainty.

 

Your life will change in an instant, in a New York minute, in the blink of an eye, and on a dime. 

 

I’ve seen it happen in the lives of people I love. A friend lost her home and everything in it--burned to the ground. All gone: checkbook, toothbrush, computer, family Bible. Not even a pencil left to tally all she lost. Her family was safe, and for that we say, “Thank God”, but really…

 

Another friend was crossing the street. The light was green. She remembers stepping into the intersection, then--days later--regaining consciousness in the ICU badly broken.

 

Another friend was taking a quick bike ride before work, a car turned left, she was in the blind spot. So beautiful, so young, so gone. A family devastated.

 

What about the to-do lists in their handbags? Their responsibilities at work? And the library books they always returned on time?

 

Twice I had to suddenly look at my life in a new way. Both times doctors holding clipboards were my wake-up call.

 

I’d always measured myself by my work, but that changed quickly. Someone asked me, “What about your career?” and I answered, meaning to be flip but surprising myself with the truth, “I don’t have a career, I have a life.”

 

That insight had incubated over time by too many funerals and too many days in Intensive Care waiting rooms watching family members die.  That was an incredible wisdom school—and in many ways a gift—but that’s a school with a very steep tuition.

 

So, in the midst of the shootings and terrorism, and this COVID-19 virus gobbling human lives like Pac Man, there may be a bit of buried treasure. 

While we can’t control everything that happens to us, we do get to make choices. We can love others, we can allow ourselves to be loved, and we can say Yes much more than we say No.

 

One day it might be that lone package on the train, or a screech of tires, or a fever and a cough that won’t quit. Or that call-back from the doc. Knowing we might die can paralyze us or it can liberate us.

 

Life changes fast. So, what do we do about that?

 

I vote for living it. Starting right now.

 

 

Happy Canada Day!

We were on vacation in Northern Ontario. It was midnight in the little village and no cars had moved for hours. 

At the crosswalk I step into the intersection and feel a sudden tug on my arm. 

My ex-husband, Peter, pulled me back to the curb, I look up to see that the signal says, “Don’t Walk”.  

Smiling I stand on the silent sidewalk and wait. When the traffic signal glows its approval to cross we step out carefully and correctly; I laugh. This is the kind of thing that happens in a mixed marriage.

I married a Canadian.

Hockey, beer, donuts, moose –these stereotypes, all rooted in Canadian reality are funny to Americans. 

We especially like the accent, the lilting up and down of Canadian speech. In just a few hours in Ontario I am imitating my in-laws, “Will ya go to the lake, eh?” But I also know that the final “eh” on Canadian sentences and obeying traffic signals are related.

The Canadian “eh” is not just a conversational tic. That uplifting extra syllable is an invitation to consensus, to agreement, and to keeping the order.

Keeping order is one of the greater aspects of Canada that we Americans-- so nearby-- miss when we think “Canadian”. Canadians –motivated by a concern for a “common good” are more orderly, law abiding and considerate than we. It’s not because they are nicer, but consideration of one’s impact on others is a strong cultural value. 

Speech patterns give more than a clue to this difference. The histories of our nations are echoed in how we use our common language. There are very few declarations in Canadian dialect. Declarations invite challenge. This makes sense when you remember that Canada did not have to struggle for independence as Americans did. 

Britain approved Canada’s confederation in 1867.  So, you can hear how the inflection, that final “eh” leaves the conversational door open with space for another’s thought.

For example, while visiting we met a young man who was dating a niece. He was not as bright as the family might have liked. 

But as I was about to blurt, in my American declarative, “He’s an idiot”, my sister-in-law said in her Canadian lilt, “Ya say hello to him and he’s stuck for an answer, eh?” Message delivered; door left ajar.

Americans however are poised for a fight. You can hear it in our speech with its tone of certainty and downward inflection; we are always staking a conversational claim. Even the most pacifist of us hold our opinions –and our right to them—like guns.  This also comes from our past. We arrived here fighting.

This is also why the gun control issue seems easier to Canadians. Friends in Ontario shake their heads at our debates and say, “Such a big fuss, eh?”  For us the gun question is emotionally charged because at a deep level we remember fighting for our land and freedom.

It may be around the idea of freedom that our look-alike cultures diverge. My husband and I have a regular debate about freedom. I say Americans have more freedom: We can be and do and say whatever we like. It’s freedom TO.

But, says Peter, in Canada freedom is seen as freedom FROM. The Canadian consideration for the common good allows Canadians relative freedom from violence, from crime, and from poverty.

Because Canada is a non-litigious culture Canadians are especially free of the kinds of legal hassles that cost Americans so much time and money.

These differences run deep but they’re obvious when you lay the historic values side by side. We salute “Life, Liberty and the Pursuit of Happiness.” There is a win-the-west, win-the-war feel to it.

Then picture Canada’s: “Peace, Order and Good Government”. Can’t you just see people cueing up and taking turns, and leaving room in the conversation for the other guy?

Canada is not a land of Boy Scout, do-gooders of course. The very contradictions make you love ‘em, eh? Theirs is a mostly non-violent culture whose national pastime—hockey-- knocks the teeth out of every male over nine years of age. And while living surrounded by natural beauty and wilderness air Canadians smoke themselves to death. We joke that Canadian restaurants offer two seating choices: Smoking and Chain-Smoking.

I learned a lot in that marriage. I learned to care more about the rest of the world as Canadians do and to not run from the room when the world news comes on.

I learned that waiting for the walk signal is not passive submission to rules and regs; rather it’s an active expression of community and being part of the common good.

Racial Discrimination & Disparity in CancerLand

So, this week we are each looking at ourselves and asking about our own participation in the culture of racism, and asking ourselves (I hope you are) “What can I do to be an anti-racist?”

But, for goodness sake Diane, this is CancerLand, could there be a place more inclusive, and more, “we are all in this together?”

Well, I get that. 

Colon cancer, breast cancer, lung cancer—when we suffer, we suffer. Our caregivers are stressed and anxious in similar ways. Yes, but. But. There are differences related to race and class and income and poverty and disproportionate care and access to care.

Years ago, working with a cancer support group I was dismayed that when there was an opportunity to locate that luscious care center in our County it was built in a very suburban area, with very little access to public transportation. Yes, busses do go there a couple times a day, but no sick or tired cancer patient was going to take two or three buses with a 30-minute wait in-between. But the place was so pretty and the staff so truly loving, that reality slipped by.

The other way that cancer and cancer care discriminates is in its relationship to poverty. When many of us—let’s say middle-class—are diagnosed, our friends rally: here come the casseroles (Oh, dam the lasagna), and the offers of childcare and rides, and “I’ll go to the doctor with you to take notes.”

But if we live in poverty the odds are pretty good that our friends do too. They care just as much but maybe they can’t cook for two families or take time from a no-benefits job to accompany us to appointments, or spend hours at chemo with us, or offer rides if public transport is their ride. 

So, patients in poverty miss more appointments, leave chemo earlier, don’t have a pal advocating fiercely for that second opinion or that NYC or Boston trip. Do those things affect cancer’s outcome? Add to that--their family caregiver likely can’t take as much time off  from work.

And, we haven’t even touched the subtle racism (let’s say unconscious) by some docs and other medical personnel. 

It’s a very different part of CancerLand.

Let’s learn about that, and use our Cancer Power for advocacy in our shared territory.

And let’s read a bit, and ask more questions, now or as soon as you are feeling better.

Want to learn more?
Here are two articles that explain this discrimination and disparity in CancerLand:

This article is from Rush University Medical Center
https://www.eurekalert.org/pub_releases/2019-04/rumc-owc042219.php

This article is by Brian Rivers, PhD for Cancer Today Magazine

https://www.cancertodaymag.org/Pages/Spring2020/Taking-Steps-to-Address-Cancer-Health-Disparities.aspx

The Tools in CancerLand That Help Right Now

Those of us who have lived in CancerLand, have a tool kit that we can open in this time of COVID-19.   These may not be tools we wished for years ago, but nevertheless, we have them. And maybe now we can lean into those tools to help ourselves and others.

Here's an article from Kate Bowler who is a cancer survivor and a scholar at Duke Divinity School: 

https://www.nytimes.com/2020/04/05/us/kate-bowler-cancer-coronavirus.html?smid=em-share

Maybe take some time today to inventory your tool kit.

What did cancer or caregiving teach you?

Sending you lots of love.


Be well. Be safe. Stay home.

When Chemo Doubles the Impact of Quarantine

Yes, those of us in CancerLand--whether patients or caregivers--have extra challenges and protocols right now. The pressure can feel more intense, and the restrictions on family are greater too.

Thought you'd like to read this story by Larry Rulison, a reporter for the Albany Times Union--who is working--at home of course because he also being treated for Stage 4 appendix cancer. Here is what it's like at his house in Albany, New York.

https://www.timesunion.com/news/article/Times-Union-reporter-undergoing-chemo-learns-what-15140810.php

What is it like at your house?

What modifications are you, and your docs, making for your care?