142 posts categorized "Cancer"

Pancreatic Cancer. Plus The Alex and Ronni Show

Even in a jam-packed political week in the United States when the Iowa caucuses took place on Monday, the State of the Union address by the president on Tuesday and the impeachment vote in the Senate on Wednesday, I spent a lot of time being distracted by pancreatic cancer.

Because I've been living with it since 2017, that shouldn't be notable. But I have felt unusually healthy in the past few months and I was thinking about well-known people who live with the same disease.

This came to mind on Monday when Wayne State University bestowed its Walter P. Reuther Humanitarian Award to Georgia Representative John Lewis “in recognition of Lewis’s decades-long history of political leadership and grassroots advocacy.”

First noting that he voted to impeach President Donald Trump, the Atlanta Journal-Constitution (AJC) recently summarized Lewis's distinguished life and career:

”Before he was a member of the U.S. House of Representatives, Lewis was and remains a key figure in America’s civil rights movement. A key ally of the Rev. Martin Luther King Jr., Lewis was the youngest speaker at the 1963 March on Washington, representing the Student Non-Violent Coordinating Committee, of which he was the chairman.

“In 1961, as one of the original Freedom Riders, he was beaten and bloodied as they rode through the South addressing laws prohibiting black and white riders from sitting next to each other on public transportation.

“The 1965 attack in Selma, where Lewis has said, 'I thought I saw death. I thought I was going to die,' sparked nationwide support, sympathy and horror and spurred Congress to move on what became the Voting Rights Act of 1965.”

Lewis was unable to attend the presentation of the award at Wayne State because he is undergoing treatment for pancreatic cancer.

In a 1 January interview, Representative Lewis told an AJC reporter,

“'As you well know, I will be going through something that I have never been through before,' Lewis said. 'I have had friends and colleagues who have gone through similar situations. I will be talking and learning from them and obeying my physicians.'”

Me too - obeying my physicians which has worked our pretty well. And I wish with all my might that it will do the same for Representative Lewis. We need people like him in Congress, and more like him.

I don't know Lewis. I've never met him and I've never lived in 5th Congressional District in Georgia so he has not been my representative.

But if I had lived there, I surely would have voted for him in every one of the 17 elections he has won and I would vote for him again in November this year. There are not many in public life these days who are as decent and good and honorable as Lewis.

Pancreatic cancer is way down the list of cancers in terms of prevalence. Number 12 behind much more common cancers as breast, lung and prostate – the top three. But it is one of the top three deadliest.

Is that the reason, I sometimes wonder, that I feel a kinship with anyone who is diagnosed with pancreatic cancer. Even people I don't know. Maybe that is how Jeopardy! host, Alex Trebek – who has been treated for pancreatic cancer since early last year – felt when he was quoted on the website of radio station WABE in Atlanta:

“We’re starting a new year, and let’s see if we can’t both complete the year as pancreatic cancer survivors,” Trebek said when asked what he would tell Lewis. He noted they’re the same age, 79.”

At his announcement of the diagnosis, Representative Lewis told the AJC,

“'I’ve been in some kind of fight – for freedom, equality, basic human rights – for nearly my entire life,' he said. 'I have never faced a fight quite like this one.'

“He added, in a message to constituents, that he might miss a few upcoming votes as he undergoes treatment, 'but with God’s grace I will be back on the front lines soon.'”

Yes. Please. Here's is a photo of Lewis at the Pride Parade in Atlanta in October 2019 posted on the AJC website.

LewisPrideParade2019

* * *

Amidst all the political hullaballoo this week, my former husband and I recorded a new episode of The Alex and Ronni Show on Tuesday.

You can find Alex's show – Alex Bennett's Ramble – on Facebook and Apple Podcasts.


The Remarkable Medical and Health Professionals I Know

For the past few months I've taken to saying, “If I didn't know I have cancer, I wouldn't know I have cancer. I like it. I made it up myself – unless I read it somewhere and forgot. If so, my apologies to whomever.

The point is I have hardly any cancer symptoms. In fact, after two years of fighting hard to keep my weight up so not to sink into frailty, I've gained an unplanned 10 pounds since September with no effort.

When I mentioned it to my oncologist, he told me to count my blessings and shooed me out of his office.

My real day-to-day health problem is COPD or, more to the point, breathing. But before the end of this month, I will have completed three months of pulmonary rehab and it has made a remarkable difference.

Before rehab, when walking from the bedroom to the kitchen, a distance of about 20 feet, I had to stop once, sometimes twice, to catch my breath. Taking out trash and going to the mailbox required two or three stops each way. And instead of one, it took two or three trips to carry in the groceries from the car.

The boundaries of my life were shrinking dramatically. Stairs required careful planning so not to end up heaving for air. And it wasn't just hills that were out of the question, it was inclines so slight that I'd not noticed them before COPD became my close companion.

Even showers were impossible, the air being too humid for me to breathe so I traded them in for sit-down baths.

When my primary care physician suggested that pulmonary rehab might be helpful, I was skeptical but I didn't have a better idea so I signed up.

On Tuesday and Thursday mornings, I've been spending a couple of hours on a treadmill of one kind or another, upper and lower body exercises, some involving Therabands, and on Tuesdays, such instruction classes as breathing exercises, energy conservation, the correct use of inhalers, nutrition for lung disease, avoiding exacerbations and a whole lot more.

Most of the upper-body exercises are done sitting down and at first I dismissed them altogether. What good could they do for someone who had done 50 pushups a day among other heavy strength training work until cancer brought that to a halt?

How wrong I was and I'm ashamed now at how dismissive I was. It was hard in the beginning but I've advanced more than I would have guessed. The treadmill too. At first, I could do only 10 minutes at .2 miles-per-hour. Last Thursday, I did 45 minutes at 2.4 miles-per-hour.

I'm not scoffing at any of this rehab now. Just a couple of weeks ago I noticed that I don't stop halfway to the kitchen anymore and I don't remember when that started happening.

As long as I don't try to walk at my former New York City speed, I now get to the mailbox and trash bins without stopping for breath, I can carry in most of the groceries in one go and I'm back to taking showers.

I'm not sure, however, that I'll ever do those slight inclines easily and I certainly won't be walking up San Francisco sized hills in this lifetime.

But most of all, it's the nurses, the three R.N.s who have been teaching us old folks with COPD how to make our lives more livable. They are amazing women – smart, informed, caring, hard-working.

On only my second visit, one of them called out “Hi, Ronni” as I walked in and I noticed that they did that with everyone, even with the new ones who had been there only once or twice.

They knew the details of our individual disease, recalled how well we had done at the previous visit, were patient with our questions and like all the medical professionals at OHSU who have helped me over the past two-and-a-half years, never appear to have a bad day.

The focus of all these people - the physicians, nurses, medical assistants, schedulers, therapists, etc. - is the patients' well-being.

I spent nearly 50 years working in media – radio, television, the internet. I loved the work itself but there was always a lot of ego floating around, fierce competition, deadline tensions and acting out.

No one was much thinking about the other guy. At our best, we worried about the work. At our worst, we worried about besting our colleagues.

As far as I can tell, that doesn't happen in the medical community (certainly not in the presence of patients) and after all the time I've spent with these people now, I've come to understand that they are different from those of us who are not in the helper professions.

The medical professionals I've been able to talk with personally all tell me they chose their careers, usually at a young age because they wanted to help people. They want to help people who can't do it for themselves and until I was diagnosed with cancer, I didn't know how selfless and hard-working they are.

I am so deeply grateful for them.


When Breath Becomes Air by Paul Kalanithi

“The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then keep figuring it out...Death may be a one-time event but living with terminal illness is a process.” - Paul Kalanithi

This is not a book review. It is not a synopsis nor an abstract, a digest nor summary. It is one person's response to a remarkable memoir by Paul Kalanithi, a brilliant neurosurgeon and neuroscientist cut down at age 38 by metastatic lung cancer.

After a disappointing survey awhile ago of a handful of books written by people with a terminal illness, I tossed them and the genre itself aside. Perhaps I chose poorly but each book in its own way was inarticulate, treacly, vague, sentimental and – particularly odd for such a fraught topic – boring.

It would have been smarter of me to start with When Breath Becomes Air which has been lying around my home unread, until last month, since it was published in 2016, a year after Kalanithi died.

This was a man driven from childhood to understand what it means to be human, to find out “what makes human life meaningful.” In his earliest years and in college, he turned to literature for clues and throughout his medical education and practice, he never stopped working on that question.

Most of us give up on existential mysteries as unanswerable. But Kalanithi kept pecking away at them throughout his short life from as many angles as were made evident to him. Two snippets from his book in this regard:

“...to understand how the brain could give rise to an organism capable of finding meaning in the world.”
“...direct experience of life-and-death questions was essential to generating substantial moral opinions about them.”

And in terms of the accumulated losses that inevitably accompany a terminal disease,

“What makes life meaningful enough to go on living?”

There has hardly been a day, after I underwent the Whipple procedure for pancreatic cancer in 2017, learned later that the breathing problems I had been having are due to COPD, and gained a couple of other chronic but minor ailments, that I haven't asked myself when enough will be enough.

The world lost more than a brilliant physician/surgeon when Paul Kalanithi died; we lost a philosopher – perhaps we could say a philosopher of medicine – too. Much in his book is conditional – he was still working on those unanswerable questions until he couldn't anymore and I wonder what more he could have enlightened us with if he had not died so young.

I've met a lot of doctors and other medical professionals since cancer so dramatically changed my life. I like and respect them all, and I hope they have put the kind of thought to their work that Kalanithi did. He writes that neurosurgery “compelled and awed him.”

“Before operating on a patient's brain, I realized, I must first understand his mind: his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end.

“The call to protect life – and not merely life but another's identity; it is perhaps not too much to say another's soul – was obvious in its sacredness...

“Those burdens are what make medicine holy...”

I want now to believe that all medical professionals believe medicine is holy because, says Kalanithi,

“...the physician's duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of their own existence.”

Hardly any healthy person can conceive of his or her own death in any real way. Even though physicians spend more time around death than most other people, Kalanithi comes remarkably close, at various points in his book, to the kind of dissonance I have felt about having a terminal disease:

“I knew that someday I would die, but I didn't know when. But now I knew acutely. The problem wasn't really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”
“I hadn't expected the prospect of facing my own mortality to be so disorienting, so dislocating.”
“...the shadow of death obscured the meaning of any action.”
“The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.”

All those things and more? Me too. Every day.

But my god, life is powerful. You might even say that life has a life of its own. Even when you're old, even when you know this thing eating your body from the inside cannot be stopped, life insists that you pay attention to it.

“...seeing death as an imposing itinerant visitor but knowing that even if I'm dying,” wrote Kalanithi, “until I actually die, I am still living.”

And so he did. After his diagnosis, Dr. Kalanithi and his wife Lucy literally made a new life together - they had a daughter before he died.

There is value without measure from reading the journey through terminal disease of such an articulate, thoughtful person. Not that he can explain the ineffable, but he opens up the internal dialogue to new places, new ideas.

The kinds of things Kalanithi writes about in When Breath Becomes Air are the same ones that nip at the edges of my consciousness almost daily, wondering when cancer or COPD or both will catch up with me for good. It's just that he states them better than I can.

Meanwhile, like Paul Kalanithi quoting Samuel Becket,

“I can't go on; I'll go on.”

Thinking Out Loud: Shifting Perspectives Toward the End of Life

Perhaps it is the time of year. Or maybe it is my natural bent in life. Or something else. It doesn't really matter why, in the past month or two or so, I have been taking stock of these past two-and-a-half years living with a fatal disease.

Not that I planned to do that. Such thoughts bubbled up from somewhere and now I feel like I've been tagging along for the ride while another part of me examines how I've been dealing with my predicament.

For most of the first six months after diagnosis – June to December 2017 – I was recovering from the massive Whipple Procedure surgery. As the doctor explained then, it takes that long to be fully functional again and I have few memories of those six months beyond resting, healing and learning the daily practicalities of navigating such an unexpected reality.

Almost no one with pancreatic cancer lives longer than a year after diagnosis so even as I regained strength, I began planning for an imminent demise. Looking back from today on that period, I see that I was irising down my life to the basics.

End-of-life documents had been completed before my health issues came to be. I had no bucket list or, at least, no travel I wanted, no big experiences to arrange before I die. I wanted just to live my normal daily life in my home, spend time with friends near and far, ponder the great unknown, and most of all, read books.

That's what I do, what I have always done going back to when I first learned to read: I do it to find out what other people know, what the world is like in its many of its permutations, how others have interpreted life, what great lessons endure and the pleasures of a good story well told.

Overall, I am quite indiscriminate in what I read. Nearly half a century ago, a woman I worked for said to me, “Everything is interesting if you pay attention.” It is one of the truest things I know.

Weekly doses of chemotherapy over three rounds of it during 2018 and early 2019, left me tired to the bone. Concentration on anything was difficult, sometimes impossible for several days after each session but then I was fine. Or so I thought. I see now after six or seven months without those chemicals that I was good way from being mentally functional. I'm much better now.

In early spring of this year, a CT scan showed no cancer. Doctors are careful about how they say that: “no visible cancer.” I remember my surgeon telling me that day, “Go,” he said, “enjoy your life.”

Just a few weeks earlier, I'd had a psilocybin (magic mushroom) session with a guide to deal with my fear of dying. It worked well and to a reasonable degree, remains so.

Since then, the aftermath of that drug and the CT scan may have had something to do with my loosening the restrictions I had imposed on myself in reducing the size of my life.

So I've been watching myself this year. Even while my physical life becomes more difficult due to the COPD, I have been broadening my horizons again, feeling more attached to life than I had been, eager to keep up with a fast-moving world.

Each day I worry more about the political future of the United States while looking in nooks and crannies of the internet for an explanation of the apparently large right-wing rush to authoritarianism, some say fascism.

How can that be? I ask. And no one answers. At least, not satisfactorily.

And then I worry that in addition to terrible outcomes we know such a political movement creates, we will have lost the fast-shrinking window in which we might be able to stave off at least some of the terrifying results of climate change.

What a pickle Earth and the United States are in – and I don't mean that lightly. That heavy, heaving word, “existential,” was invented for such a time as we are living in not to mention, for the age group that mostly reads this blog, end-of-life issues that must be faced in the natural order of the cosmos.

Elderhood is often thought of as a time to take stock, to make peace, to tie up loose ends. Most of us slow down a good deal in these late years, rarely by choice, but it comes with old age, with bodies wearing out. Supposedly, life gets simpler but we, early boomers and late silent generation, got plopped down in one of the most frightening and dangerous periods in modern human history. Oh, goodie for us.

For a large part of this year, as much as a diagnosis like mine isn't ever far from one's mind, I have become more attached to life again.

Back and forth I travel: life, death, life, death. Maybe I am learning something about Viktor Frankl's belief that the one thing no one can take away from anyone else is the ability “to choose one’s attitude in any given set of circumstances.” I can't say mine has been a conscious choice. Mostly, I'm just watching what happens as these days and months and years pass by.



Some Satisfactory Health News

Satisfactory? Did I say that in the headline? Well, yes I did. It is a long way from earth-shattering but good nonetheless.

Here's the news: On Monday, I had a CT scan to see what the cancer has been doing. On Wednesday, the oncologist said the scan shows the lesions in my lung and peritoneum have grown a small amount, something just over a centimeter.

Given my diagnosis of pancreatic cancer, that is good news. I've had no chemotherapy since the last CT scan three months ago and the cancer hasn't changed much in that time. Plus, no cancer is evident in other organs.

I'm not too proud to admit that I wept in relief - just a little bit but not until I was in the car. And that heavy, dark cloud I had been dragging around with me early this week lifted.

Those two days between the CT scan every three months and learning the results are a bear to get through emotionally.

It's not that I don't believe the cancer will kill me eventually or that I don't know I've already beaten the odds by surviving a year-and-a-half beyond average after diagnosis.

But if you don't count the COPD breathing problem and low energy it causes, I feel like a normal, non-sick person.

In fact, without intention I have put on enough extra weight in the past month or so that I need to diet off some of it.

Almost all pancreatic cancer patients can barely maintain their weight which was true of me until recently. The doctor has no idea why that changed but suggested I count my blessings. No kidding.

And that's all I have to say today. I have had appointments away from home every day this week that will continue into next week and I'm worn out already. I need some unscheduled, quiet time.

No need to comment on this post. Mainly, I just wanted to fill up the page so I can read or nap or whatever else I want for a couple of days without anyone thinking something terrible has happened.



What It's Like to be Dying

A friend emailed about his grandson. “What's it like,” the nine-year-old asked, “to be dying?”

(Dear god, is this what happens when kids are done with dinosaurs? I would have guessed that at least a couple more years would go by before this kind of serious question comes up.)

The short answer is that it's not much different from living. I eat and sleep and read and watch TV or movies, see friends, write this blog as I have done for years along with cleaning house, grocery shopping, cooking, the laundry, etc. You know, the everyday necessities and pleasures of life.

The longer answer is that each one of those ordinary tasks takes longer now than before the cancer diagnosis and the surgery that took several months of recovery.

Now, since the additional diagnosis of COPD, they all take even longer and require more rest periods while I'm doing each one.

Getting that stuff done has become the framework of my life – the measure of my days – so that I can be free to spend time on whatever catches my fancy and, regularly, what it means to stop living. To die.

That weighs on my shoulders, it's there all the time although not always at the forefront.

Simple pleasures are greater now. For several weeks, I've been carrying on about this year's fall colors to anyone who will listen. I don't recall them lasting so long or so stunningly in the past.

On Monday, driving a road through a woods to a doctor appointment, the brilliant yellows of last week had become a deep, burnt orange. I've never seen that. Or, rather, not so much of it. It makes me happy.

Sometimes I read what others have written about being terminally ill. They are all more erudite and thoughtful than I although they usually are nearer to death than I am yet (well, one doesn't really know that). Maybe I will magically become more wise as my time gets shorter. Hmmmph.

Other times I hope that when it is my turn, I will have let go enough of earthly life so to be eager for (or at least, accepting of) what comes – or doesn't come – next.

I watched this happen to my mother and to my great aunt. They gradually lost interest in the world around them. I believe I've noticed hints of this phenomenon in me recently. Just a few days ago, I deleted saved videos of two television shows I have watched regularly for many years. That evening, they just seemed dumb. They offered nothing that engaged my mind.

Although my “trip” last December with magic mushrooms (psilocybin) went a long way toward easing my bone-chilling fear of death, it is not a total relief.

Facing oblivion, the wiping away of one's unique self doesn't stop being unimaginable, and when those thoughts come to mind (they have a habit of creeping up from behind me when I'm not expecting them), I purposely dwell on them. I breathe deeply and try to make myself believe it will be all right.

You could say at this point that death and I are dating. I think we've made it to the holding hands stage. We're open to each other. We want to know more although if I'm going to anthropomorphize death, it's probably a good idea to assume that he/she already knows me well enough.

So living while dying is not all that different from living without a deadline (so to speak) which is how I think I like it. I can't be sure because I've never done this before and – damn, there are no rehearsals.

My god, this blog post is so much less than I wanted it to be. Maybe I'll give it another try down the road.



Some Random Thoughts on End of Life

Here are some thoughts related to my “predicament” that have been rolling around in my head. Obviously, they are not fully formed yet - you might even say they're half-baked. Maybe they ring a bell for some of you.

U.S. Supreme Court Justice Ruth Bader Ginsburg notwithstanding, about 90 percent of people with pancreatic cancer don't live long. Rarely more than a year after diagnosis.

Even though I have passed that deadline (no pun intended) by 18 months, it is damned hard to imagine the future without me in it.

* * *

My interest in politics goes back at least to 4 November 1952, when I was 11 years old and allowed to stay up late that night to listen to the returns in the presidential election between Dwight D. Eisenhower and Adlai Stevenson.

Cancer hasn't changed that. Until July I told people I wanted to live long enough to read the Mueller report. Now I want to live long enough to see the results of the 2020 election.

If I do live to see that, I wonder if I will then find another event I want to live to see.

* * *

It appears to me that this is the most beautiful, most vibrant fall season I've ever experienced. Leaves gone crazy inventing new colors.

That may or may not be true but it seems so and I wonder if mother nature knows something I don't and produced this spectacular show just for me because it is my last fall.

* * *


How acutely sensitive I have grown over the past two-and-a-half years to the splendor of our home in the cosmos, our big blue marble of a planet.

The perfection of every flower. Of every animal. Of the sun. The rain. The wind. All know exactly who and what they are and I weep with joy at the magnificence of their life, along with despair for their future.

* * *

At first, you think you can go on living as you did before a doctor said the word cancer. Then you learn you cannot. You're different now and it is not the same thing as knowing everyone dies.

Although I should also say that on the occasions when the thought of dying becomes too heavy to bear, I remind myself of this: How hard could it be? Everyone who ever lived has died.

That feels more flip in print than I intend when I say it to myself.



Those Bogus Cancer Cures

One of those emails dropped into my inbox a few days ago. It had been several months since the last one – swearing that megadoses of vitamin C would cure my cancer.

Before that, other TGB readers had declared to me that biomagnetism (whatever that is), bee venom and the ever-popular extract of apricot pits would cure my cancer.

And in case I was suspicious, they each said they know the particular cure they were touting works because their (mother, father, cousin, best friend, pick one) – has been free of cancer for five or six or 20 or whatever number of years.

Yeah, right.

In recent years, new cancer treatments have come along some of which, immunotherapy, hormone therapy, targeted drug treatment, cryoablation among others, show promise. But no one is curing cancer wholesale yet.

After confirming pancreatic cancer, the doctor explained that the only treatment was surgery, the Whipple procedure, followed by chemotherapy. Without it, he said, I would be dead within a few months.

It is a terrible, intrusive surgery that would last 12 hours or more, the doctor said, but that I was a good candidate for it: the cancer was contained in one end of my pancreas; I was, especially for my age, in excellent physical shape, and had no other medical issues.

I took a night to sleep on it before making a decision.

It's hard to think in that situation - having been told you have a kind of cancer that kills about 90 percent of people who are diagnosed with it - and it doesn't fool around like some slow-growing cancers people can live with for many years.

Pancreatic cancer was not a mystery to me. My father had died of it 35 years previously so I had a fair bit of familiarity with it – none of it good.

The will to live, I discovered over that night, is extraordinarily strong. And so the next day, I told the surgeon I would “do the Whipple,” as it were, and it was scheduled for three weeks hence.

After I wrote about the diagnosis and upcoming surgery, I received an email from a reader recommending a certain alternative treatment. He or she (I don't recall which) was insistent that this worked, that he/she knew people whose cancer had been cured and etc.

Of course, I dismissed the email as ramblings of an idiot. If there were a cure for cancer, we would all know about it. It is one of life's mysteries – at least to me - why so many people don't get that. But the email did force me to think carefully about how I wanted to deal with my cancer.

For being such a momentous decision – literally life and death – I was surprised at how easy it was.

I was being treated at a medical center than includes five hospitals, a medical school, a research center and much more. A whole lot of people working in the oncology department there had seen a whole lot more cancer than I ever would.

So it wasn't a leap to decide that I would follow the doctors' instructions. Carefully. And I have done that. Now, nearly two-and-a-half years since diagnosis I'm still here and in relatively good daily health – neither of which I expected by this date. So I believe it has been a good decision.

It's not that I entertained for a moment such bogus “cures” as are sold on professional-looking websites that nevertheless occupy some of the darker corners of the internet.

Plus, I doubt that either private insurance or Medicare pays for this kind of treatment so it would be out of the question for me anyway. I'm too poor.

But the bigger issue than me is how many people diagnosed with a terrible disease are desperate enough to try such so-called cures. The websites never say “out loud” that they cure cancer but like those cancer center commercials on television, all are designed to activate our “miracle” gene.

I'm pretty sure if miracles were happening from any of these regimens, they would be sure to tell us.



Crabby Old Lady Faces Cancer Season

They're at it again, the media is, especially television. Apparently, fall is cancer season. Everywhere Crabby Old Lady clicks her remote, there are commercials for cancer.

With five hospital and five outpatient locations around the U.S., Cancer Treatment Centers of America (CTCA) is only the most ubiquitous. There are plenty of other cancer treatment centers that advertise mainly in the cities or states where their single facility is located. St Judes, the well-known children's cancer research hospital located in Memphis, advertises nationally.

But it doesn't stop there. Individual cancers have their own commercials for societies, foundations, associations, etc. that provide certain medical services and support for those who are diagnosed.

Recently, Crabby has seen such commercials for the Breast Cancer Foundation, the American Cancer Society and the Skin Cancer Foundation.

And then there are the commercials for less well-known, local treatment centers. These often star survivors - especially those who have survived more than one cancer - telling their stories.

At least one treatment center is not so eager to shout cancer, cancer, cancer from our screens. M.D. Anderson seems to have changed its name recently to M.D. Anderson Center:

At M.D. Anderson, the YouTube page tells us, you're considered a survivor the moment you receive a cancer diagnosis. (Wow. From disease to remission in one little twist of language.)

Crabby Old Lady does not for a minute buy that bit of doublespeak meant to put a happy face on cancer.

As she may have mentioned in the past, Crabby has become a master manipulator of the mute button on her TV remote. She wields it in a matter of a second or two when she hears President Trump's voice on television because she finds it and his lies so repellent.

This time of year, she adds the word “cancer” to her mute button skills. It's enough to be living with cancer every day - Crabby doesn't need to be reminded by all those bright, shiny, smiling people behaving as though cancer is the best thing that ever happened to them.

It is not. Not ever. Cancer is the hardest thing Crabby Old Lady has ever been through and she has it easier than a lot of cancer patients.

All those smiles in the commercials are meant to suggest that this or that treatment center knows how to cure cancer better than another center. Listen to Crabby: if there were a cure for any kind of cancer, we would not be hearing about it first in a television commercial.

Or maybe Crabby missed that announcement when she muted her remote.



Cancer/COPD Update – Greed Edition

Fall colors are gorgeous here in northwest Oregon this year. The most brilliant yellows, reddest reds, a wide variety of greens and some leaves so orange they seem to have been invented on purpose just for Halloween.

Me too. I'm feeling all dressed up and ready for a party or, at least, some ice cream. I feel so much better than I felt all summer.

Summer was bad but the odd thing is, I didn't realize it at the time. I thought I was okay if I didn't count the pain. Isn't it strange how it can take some distance sometimes to understand what was going on.

In July, I compared my cancer predicament to that of the characters in the TV show M*A*S*H who were stuck in a war zone:

”It is easy with a diagnosis of terminal cancer to feel despair,” I wrote, “wishing even that the wait for the end be over soon. But after watching M*A*S*H, which I do two or three times a week, I feel empowered to persevere, that there are people I love I want to spend more time with, books to read and this blog where you, dear readers, allow me to hold forth on whatever crazy ideas I have.”

Yes. But it turned out to be not that simple.

For the pain, I was using extreme dosages of over-the-counter medications which worked only to a degree plus they made my head fuzzy. Mostly I managed to keep up this blog but little else. Social life almost disappeared; I didn't have the energy.

It felt like I was winding down. Day by day, I was gradually accepting the idea that I did not have much time left. When I looked at my medical calendar, I wondered if my doctors just took off for the summer. It seemed that way with hardly any appointments scheduled compared to winter and spring.

At any other time in my life I would have been happy to have doctor-free days and weeks. This time I felt abandoned and there were moments when I wondered if absence was the doctors' way of telling me I was done for.

When the pains finally were under some control, my mind cleared a bit and what I noticed was a deep malaise, and a dwindling interest in just about anything that took more mental effort than watching a M*A*S*H episode.

At an excruciatingly slow pace over August and September, the pains subsided. Some are still with me but less like pain and more like a presence. I no longer need pain medication.

With the end of summer, the number of medical appointments has picked up. Earlier, I had been diagnosed with COPD in addition to cancer and now oxygen therapy has been prescribed. (What a huge load of equipment that entails.)

A physical therapist gave me some exercises that have helped with the remaining pain and stiffness in my hands and fingers.

Last week, the pulmonologist suggested a course of physical therapy meant to teach me how to live more easily with a breathing difficulty and yet another physical therapist gave me an excellent list of ways to conserve energy so that even with less than optimal breathing, I can still do much of what I want and need. All good.

The most profound change has been my mood. I'm me again and it took so little to make the difference: realizing that several professionals, who work with a lot of patients who share my kind of predicament, think I'm healthy enough to use precious resources that will improve my quality of life.

Having figured that out, I drove home from last Friday's appointment wearing a grin as wide as the whole outdoors. The fall colors blazed brightly and I wondered how I had allowed myself – pain or no pain – to become so dejected over the summer.

Few people with pancreatic cancer live more than a year or so after diagnosis. There was a time when staying alive long enough to see the Mueller Report was enough for me.

Well, that was a dud and now I've gotten greedy. I want to see the results of the 2020 election. Whether President Trump is impeached and removed from office or not, this is an election like none of us has seen before. I hope not to miss it.



What Cancer Patients Don't Tell You - Part 2

Part 1 is here

One of the hardest parts of life since I was diagnosed with pancreatic cancer two-and-a-quarter years ago and now, COPD, is just how long it takes to do ordinary things that were so easy as to go almost unnoticed during the decades of my pre-cancer life.

Add to that the new medical chores – buying, counting out, tracking prescription drugs and refills; doctor appointments and travel time; forms to fill out prior to every appointment; tests; and so on.

Now I have a new responsibility: I've been prescribed oxygen and last week the technician came to drop off the paraphernalia and teach me how to use it.

If, like me, you have been extraordinarily healthy throughout your life, even being tethered to an oxygen concentrator feels like a burden – except that I need it. I'm still training myself to always watch so I don't trip over the tubing in the two places where I can't hide it out of the way.

It is not clear to me yet how useful the small, portable tanks are. They weigh so much that I can't imagine walking more than a few feet with one hanging from my shoulder but I suppose I'll need to figure that out, (she sighed).

As I explained in Part 1 of this two-part series, everything is hard for the first two hours of my day while I wait for body and joint pains to dissipate. I usually can manage making breakfast and, most of the time, washing up the dishes afterwards although the latter depends on how much my hands and arms hurt.

Also, I can get a lot of news reading, email and research/writing work done for the blog as long as I remember to stand up and walk around for a couple of minutes now and then to keep my knees from getting stiff.

I've switched my main meal of the day to lunch when I still have the energy to prepare something more elaborate than I do in the evening. Sometimes in midday, I cook a couple of meals ahead for future dinners.

Timing is more important in my life now. I choose the time when my breathing seems best to take out trash or pick up the mail. This is mostly during the late morning or early afternoon. Maybe when I figure out the mobile oxygen tanks I'll be more flexible. But I will be hiring a cleaning service within the next week or so – the vacuum cleaner is just one new difficulty for me nowadays.

I also need to get grocery shopping done in the same period of time. I had no idea before now that pushing a supermarket basket – even the small size – could leave anyone short of breath.

For most of my adult life, certainly many years before cancer and COPD, I ran out of mental steam by mid-afternoon. In fact, in a planning meeting back then, my boss once said to my colleagues, “If you need Ronni's help on any of this be sure to ask her before 2:30PM or 3PM; she's useless after then.”

She wasn't wrong and now it's physical fatigue too. I'm pretty much done for the day by 3PM, and after three or four more hours of low-impact, low intellectual puttering and then dinner, I'm in bed with a book or a movie. Even when I sometimes take a nap for an hour, my day is over by 7PM and an hour earlier is not unheard of.

If you've been counting on your fingers while reading the above, you've probably figured out that after accounting for pain, medical chores and the normal, daily tasks of life, I don't have a lot of free time left over.

Nobody tells you that if you get a serious disease in old age, you will be busier than you've ever been – or, at least, it will feel that way because you are so much slower.

Until about a year ago, a friend sometimes asked me to slow down when we were going somewhere together – I hadn't shed my New York City speed-walk. Nowadays I need to ask her to slow down, and I have even greater sympathy for the old woman in this video than when I first encountered her on the web about 10 years ago.



Justice Ruth Bader Ginsburg and Pancreatic Cancer

Did you see the news last week about Supreme Court Justice Ruth Bader Ginsberg? The headlines were everywhere:

Ruth Bader Ginsburg Treated for Cancerous Tumor on Pancreas (AP)

Justice Ruth Bader Ginsburg Undergoes Radiation Therapy For Tumor (CBS New York)

Justice Ruth Bader Ginsberg Treated for Pancreatic Cancer (Variety)

That the news of her latest cancer treatment made Variety just goes to show that she's a rock star way beyond her position on the top court of the United States.

Official-ginsburg2

There were dozens more similar headlines. It would be gratifying to know that the media is as much in love with the “Notorious RBG” as so many women of all ages are but the more likely explanation that she is 86 years old, and if she leaves the bench, President Trump will get his third appointment tilting the Supreme Court even further to the political right, six justices to three.

I'm a fan, have been for a long time - even before the 2018 documentary, RBG, recounting her pre-Supreme Court legal wins that changed the world for women. That film won at least 13 major awards including the Oscar for Best Documentary Feature.

Maybe I see her as such a hero, too, because she is small and she is quiet, not the sort of person in our selfie-driven, narcissistic era who usually gets a chance to stand out. But she does, entirely on merit.

So my heart sank when I saw the first headline about her recurrent pancreatic cancer. If you've been reading along here in the past couple of years, you know that I know a thing or two about that now – the most pertinent fact being that the overall survival rate is about 10 percent.

But the news of her treatment is heartening. It is the Supreme Court that issued a press release about it on Friday. According to the AP:

”The court said in a statement that a biopsy performed July 31 confirmed a localized malignant tumor,” reported the AP. “Ginsburg, 86, underwent a three-week course of radiation therapy and as part of her treatment had a bile duct stent placed, it said.

“The court said Ginsburg 'tolerated treatment well' and does not need any additional treatment but will continue to have periodic blood tests and scans.

“The tumor was 'treated definitively and there is no evidence of disease elsewhere in the body,' the court said.”

This was not Justice Ginsburg's first go-round with pancreatic cancer. She was successfully treated for the disease in 2009, which itself followed surgery ten years earlier for colorectal cancer.

In a sense, cancer has been a companion of RBG's for 20 years.

The past twelve months have been a particularly fraught health year. In November 2018, she fractured three ribs in a fall and in December, she underwent surgery to remove two cancerous growths from her left lung.

The news of this latest cancer treatment along with accompanying reminders of her previous cancers leave a lot of people wondering if Ginsburg will soon retire from the Court. But she seems to be indomitable.

There are reports that she attended at least one Broadway show while she was in New York City for the three weeks of radiation treatment. And according to one story, she was back at work at the Supreme Court Friday afternoon following her final radiation treatment.

Is it any wonder that Justice Ginsburg is my inspiration during my own predicament with two of the same cancers. It may be an odd thing to say but although my admiration and respect for Justice Ginsburg is wide and deep, it is moreso because we share this horrible disease.

She is a beacon to me. One thing I've learned about cancer is that if it doesn't kill you right away, it never gives up trying. In her quiet way, Justice Ginsburg just keeps on keeping on and I try to do the same.

Of course, this latest cancer announcement gives the media and other Washington watchers the chance to again speculate on Ginsburg's retirement from the Court. As she said not long ago, according to NBC News,

"'My senior colleague, Justice John Paul Stevens, stepped down when he was 90, so I think I have about at least five more years.'”

Dear god, make it so.



Living While Dying

What I have always liked are the surprises in life, the unexpected events that seem to occur to remind me that I don't control everything, and this surely is the biggest ever for me.

There has always been a lot of loose activity going on in the ether that impinges on my plans. Some of it is pleasurable, but a large amount gums up the works.

Knowing perfectly well that some people die hard deaths didn't stop me from assuming I would be as disgustingly healthy up to the end as I had always been – that is, until I was diagnosed with pancreatic cancer at age 76.

Ruminating on my own demise now and then in those many pre-cancer years, I never got further than something like, “I lived and then I died”, anticipating no remarkable lead-up to death.

To repeat myself from a week ago, “Man plans and god laughs.” You can't say in the case of this particular unexpected event, cancer, that it doesn't gum up my personal works.

The joint and body pains from a medication that didn't work out is one of those. Three weeks or so since ending that medication, the pains are receding in small, daily increments, but it is so slow I wonder if it will entirely go away.

As interesting as life has been these past two years, and continues to be, this is not one of the better surprises of my life nor is the COPD that the medication was meant to help control.

Backing up a couple of years, after the Whipple surgery from which it took months to recover, I watched myself create a smaller life, shrinking it down closer to essentials without many frills.

I wanted more time alone, too, and tried to arrange my social life to accommodate that. I was winding down my earthly existence, concentrating on only what was most important to me in the time left.

Then, early this year, my oncologist told me that the chemotherapy had shrunk my tumors by half or so and that he expected me to be around “for quite a while yet,” he said.

Soon after, I noticed that I was gradually expanding my life again. A few more social engagements, purchasing some books I had thought I wouldn't have time for and I even bought a sweater I liked – the first new clothing since the cancer diagnosis.

Before the latest diagnosis of COPD and the body/joint pains, I liked to tell myself (and others who would listen) that I was so free of symptoms that if I didn't know better, I would think I don't have cancer.

I suspect now that will never be so again. Even though, if you don't count the body pains and shortness of breath, I feel reasonably good, from now on I will be living while dying.

That was true before but I was not so out in the open and honest with myself about it as now, and maybe that's why I have been searching out smart thinkers, philosophers and others who have written well about growing old and getting closer to death.

Last week, that brought me back to 20th century, British philosopher Bertrand Russell and his essay written when he was about 80 titled, “How to Grow Old.”

It is very short – just three pages – and here are his points that are salient to me. Well, this week. We'll see how that changes or not.

”Psychologically there are two dangers to be guarded against in old age. One of these is undue absorption in the past. It does not do to live in memories, in regrets for the good old days...

“The other thing to be avoided is clinging to youth in the hope of sucking up vigour from its vitality.”

These have not been issues for me but it is still good to be reminded. More interesting is this, about facing the fear of death:

”The best way to overcome it – so at least it seems to me – is to make your interests gradually wider and more impersonal, until bit by bit the walls of the ego recede, and your life becomes increasingly merged in the universal life.

“An individual human existence should be like a river – small at first, narrowly contained within its banks, and rushing passionately past boulders and over waterfalls.

“Gradually the river grows wider, the banks recede, the waters flow more quietly, and in the end, without any visible break, they become merged with the sea, and painlessly lose their individual being.”

Although this cancer/COPD event was a surprise to me, I think if given a choice, I would prefer the situation I'm in, knowing death is coming relatively soon but with time to appreciate and make good use of the new and different perspective it gives me.

* * *

[EDITORIAL NOTE: This is the first of what will probably be more such ruminations on my predicament. Like today, they might be triggered by something I've read or what someone tells me. Other times it might be random thoughts without any conclusions. Perhaps we can call it, simply, thinking out loud.]



“Man Plans and God Laughs”

As I mentioned in a post last week, I've been through a lot of pain over the past few weeks. It's much better now but was the worst I had felt during this cancer odyssey since recovery from the Whipple surgery in the summer and fall of 2017.

When I hurt or am sick, my mind wanders to the dark sides of life - in this case, frequent thoughts about when, with a terminal illness, it is time to go. Is it now?

My palliative care physician tells me his patients invariably know when that time arrives - time to stop treatments and for some, to invoke Oregon's Death with Dignity law.

But even with that, my mind was also its usual busy self: things to know, books to read, people to talk with, blog posts to write. Etc.

Stepping back from myself, I could see – if I make it my choice - it was not yet time to die.

When you are healthy and particularly if you are also young, you think you know what you're talking about when in reality, you will come to see one day that you were fooling yourself.

Well, maybe not you, but certainly me. All those big life questions I thought I had so diligently explored over years and, as much as possible, answered? Piffle.

Even with plenty of evidence to the contrary (all but one in my family died of cancer), somehow I believed that I would be healthy and hale until, at an advanced age, I would die quietly in my sleep.

As it turns out, according to a quick trip around the internet, the number of people who do so is hard to calculate and often – especially with elders - the result of underlying disease which may or may not make death while sleeping a “quiet” experience.

Further, until I sat down to make some notes for this post, I had not realized that for many years – decades, to be truthful - I also believed in a contradiction: I had come to see death as life's last great adventure and I wanted to experience it while awake, not in great pain and lucid.

I still do. So what is it? Die in my sleep or die wide awake? You can't have both.

When I moved to Oregon nearly a decade ago, I was pleased to know that along with seven other states and the District of Columbia, physician-assisted dying is allowed by law.

Among other requirements are that the patient be mentally competent, be diagnosed with a disease that will lead to death within six months as confirmed by two physicians, and be capable of administering or ingesting the life-ending drug without assistance.

The drug, I am told by a physician, puts the patient into a coma within a few minutes and death results shortly thereafter.

How is it I didn't realize before that I cannot be awake and lucid enough to experience the main event and also be in a coma? Not that I know what goes on in anyone's mind while in a coma but I doubt I would be aware in the way I want to be during the last moments of my life.

What a dilemma – because I don't want to die in an anonymous bed somewhere in a “facility”, but at home amongst my stuff and one or two or three loved ones. If you let a disease run its course, there is no way to guarantee that.

Which is where I'm stuck.

And here is another thing I hadn't considered: The drugs, acquired via doctor's prescription, cost between $3,000 and $4,000 – and I doubt Medicare Part D pays for them. That pretty well guarantees physician-assisted death is a privilege reserved for the middle and upper classes.

Do the inequities in American life actually follow some people to the grave?

An old Yiddish saying tells us, “Man plans and god laughs.” No kidding.



Old Age Really is Not for Sissies

For the past five or six weeks, I've been in a great deal of pain. It's been weird. My joints and various parts of my body ached – often enough to keep me from moving around much.

Getting out of bed and up from a chair was problematic. Not to mention funny if your humor, like mine, leans toward the grim and grotesque: I walked a lot like a crab for 10 to 15 minutes and was grateful there was no one here to see me.

A couple of times the pain was so awful the only comfort was to curl up in bed and weep.

The weird part is that the pain moved around my body. One day my ankles, knees, wrists and upper arms would hurt. The next day it would be my calves, neck, left knee and right wrist. And so on.

Even weirder, until one of my doctors asked me if I'd tried ibuprofen, a pain killer had not occurred to me. Okay, for a majority of my 78 years – 76, in fact, before my cancer was diagnosed - any painkillers in my cupboard were likely to have expired; I hardly ever needed them. Still, how stupid can one old woman be.

The painkillers worked in reducing the pain but not nearly enough to call it a solution. Anyone who's been where I was knows how exhausting constant pain is.

The reason we have such phrases as “one in a million” is that most of the time what happens to me, to you, to others is not singular. In a large number of areas of life, we can relate to one another because our own experiences (good and, in this case, not so good) parallel other people's.

That is the reason I feel okay writing about this – that and the large number of times I have read in the comments here that it helps to know “it” happens to others.

Young and old alike rag on old people for their “organ recitals”. As I think we have have discussed here in the past, there is value in doing this with people in our own circumstance, even when there is not a handy fix.

If we live long enough, there is a constellation of maladies that can afflict us. Pick one. Or two. Or more.

Mine, currently, are cancer and COPD. A couple of weeks ago, one of my physicians thought the drug in the inhaler I was using to help the COPD might be the pain culprit. He ordered an inhaler that uses a different class of drugs.

After a week of bureaucratic chitchat among my insurance provider, the pharmacy and doctor's office that was time-consuming for me and is mind-numbing to recount (so I won't), I finally got the new inhaler. It's a finicky little bugger that refuses to emit the medication sometimes (says the brochure) even if the user seems to have correctly followed the seven steps involved.

So far “sometimes” is an understatement since it happened on only the third day I used it. Printed in minute text, the instructions are nearly unreadable but I did find further notes and the final admonition to “Call your doctor for instructions” if this happens.

As I write this, I am awaiting a return call.

Here's the good news. Although I am still taking an over-the-counter painkiller, I can tell that the pain is diminishing by the day. I can get out of bed and up from a chair with only about 15 seconds of “crab walking” instead of 15 minutes.

As of two days ago, I can raise my arms above my head – important when reheating coffee in the microwave – for the first time in a month or more. What pains remain are not as fierce as in the past weeks.

It appears the doctor, who mentioned that he had never seen the pain side effect from that first inhaler before, pulled a Dr. House out of his hat for me.

It was decades ago that the actor Bette Davis who, in the space of less than a year was diagnosed with and underwent surgery for breast cancer followed in quick succession by several strokes, uttered her famous quip, “Old age ain't for sissies.”

As cogent as it is, it is way overused and I'm tired of hearing it for every hangnail. But these days, I sure do get the point.



M*A*S*H in Old Age

You may think a 40-odd-year-old TV show has nothing to do with growing old. I would have said that too until I took a new look at M*A*S*H, as a 78-year-old. Let me explain.

Before I settle down to sleep, I have now and then been watching a rerun of the 1970's sitcom M*A*S*H. They're short, 30 minutes, just the right length to take me out of the concerns of my day before falling off into limbo until morning.

The show had been a favorite when it was first broadcast way back when (1972-1983) and it is no less so now. It's great fun watching Hawkeye, BJ, Hot Lips, Klinger, Radar, Frank Burns, Trapper and all the rest of the cast again. Not to mention some of the best writing in the history of television.

Until this new viewing, I had not realized how much I identified – and still do - with Hawkeye.

The show specialized in my kind of gallows humor, and I don't get tired of Hawkeye's and Klinger's efforts to escape the horrors of a war neither of them believe in while tending to the often gruesome medical needs of the wounded and dying young soldiers.

The reason I'm writing about a TV show that's nearly half a century old is that it struck me a week or two ago that there is not much daylight between Hawkeye and me. Klinger too.

We each find ourselves in an impossible predicament over which we have little control and is likely to kill us at any time. North Korean bombs in the case of Hawkeye; a nasty disease in mine.

Of course, anyone's instinct is to get out of the way as fast as possible but both of us are trapped having to make the best of that predicament. Hawkeye resorts to women, pranks, mordant jokes, his beloved martinis conjured from homemade gin in the tent he shares with BJ along with a strong sense of decency and compassion.

My defenses include never pretending that my disease won't kill me, doing my best to follow my doctors' instructions, keeping myself honest about the cancer by writing about it here, some mordant jokes along with a strong sense of moral outrage aimed at the current U.S. administration.

What struck me a few nights ago after watching a M*A*S*H episode is that the sitcom is an excellent course in coping with dread in the face of Hawkeye's and my individual predicaments.

It is easy with a diagnosis of terminal cancer to feel despair, wishing even that the wait for the end be over soon. But after watching M*A*S*H, which I do two or three times a week, I feel empowered to persevere, that there are people I love I want to spend more time with, books to read and this blog where you, dear readers, allow me to hold forth on whatever crazy ideas I have.

No matter how discouraged Hawkeye and his M*A*S*H cohorts become, they rely on each other to keep going in frightening circumstances and do you think the writers and actors imagined that even 50 years later, they could inspire me to do the same in my own predicament.

Or, maybe you already know this and I am just a very slow learner.

As I was winding up writing this, I checked the web to see if anyone else had ever found such inspiration in the show. Lo, on exactly this day one year ago, Howard Fishman, writing in The New Yorker (how did I, a lifelong subscriber, miss it), was a year ahead of me.

The piece is titled, “What M*A*S*H Taught Us” and Fishman concludes:
“In 1968, the notion that our true enemy could be the callousness, hypocrisy, and small-minded ignorance of our own leaders was fashionable. Fifty years later, it’s become evergreen.”

Let's end with a fine monologue from Hawkeye, a eulogy when a nurse is killed by a landmine following a date with him, that is more explicit about the show's goals beyond exquisitely rendered entertainment.



Cancer, Old Age or Something New?

EDITORIAL NOTE:
It's been a rough couple of weeks here with unexplained body and joint pains keeping me from doing much of anything except this blog and sleeping. Finally yesterday morning, I got out of bed without wincing and it feels now like I'm on the mend.

However, I'm really, really tired. Too tired to write a new blog post and I need a nap. Because I have no idea what caused this extended period of pain, I'm going to re-publish a related story from only a couple of months ago that a lot of you seemed to enjoy and caused a few laughs among you.

On first publication, it was titled “Cancer, Chemo or Old Age?" - comments here. I'm not currently taking chemo so this time, maybe it should be “Cancer, Old Age or What the Fuck now?” (Sorry if I offended anyone.)

I'll be back tomorrow with the Saturday Interesting Stuff.

* * *

CANCER, OLD AGE OR WHAT THE FUCK NOW?
That's the question I spend some of my time trying to figure out. A new pain in my elbow. Nausea if I eat one more bite. A nose so runny I use up one-and-a-half boxes of Kleenex in a day.

I'll go with old age as the cause of a pain in an elbow. Nausea is probably from the chemo. And who knows (nose?) what's causing my constantly running nose.

I suppose it doesn't matter. Cancer, chemo or old age doesn't change the fact of whatever is bothering me. But it might be helpful to know which does what so that perhaps a medication can be adjusted - although I'm not pretending that symptoms at this simplistic level can in any way be compared to pancreatic cancer.

When I was first diagnosed two years ago, my idea was to follow the instructions of my various physicians and nurses while making preparations for my death. The statistics tell the irrefutable story: fewer than 10 percent of pancreatic cancer patients live beyond one year after diagnosis so I've already won this lottery.

Time went by. It took nearly a year to entirely recover from the 12-hour Whipple surgery. The pain I experienced then was anything but a mystery: 22 surgical staples along with the removal and/or rearrangement of several organs.

Some chemo followed but was stopped when it was deemed ineffective. Eventually, my current chemo regimen began and so far, as I have reported here, it is working well and – amazing – with each treatment the side effects have lightened or disappeared.

Just like not knowing what is responsible for my improved chemo side effects, I have no idea how long this situation of such a good response to the chemo will last. It will end at some point; I just don't know when.

The only thing I think I know about living a reasonably untroubled daily life with such a noose hanging over me is that I must find a way to make peace with it. Which is pretty much the same thing as making peace with dying.

The psilocybin session I underwent in December, the benefits of which so far are holding strong, get me partway there. The rest is one of the passages people in my predicament have to deal with several times.

It's doubtful that any of this is unique to me. I'm just surprised that no one I can find talks about it. Does anyone reading this know what I am not too clearly trying to say?



Is Laughter the Best Medicine?

EDITORIAL NOTE: A couple of weeks ago, Andrew Soergel, who is is studying aging and workforce issues as part of a 10-month fellowship at The Associated Press-NORC Center for Public Affairs Research, interviewed me about retirement and a whole bunch of other topics. We had a lively time together, the story has now been published and you can read it here.

"Andy tells me that when he's got some time, he pull together some of the other things we talked about for another story. I'll let you know when that is published.

* * *

Last week, my oncologist told me that I look much better, much healthier than when he canceled my chemotherapy two months ago. I was surprised; I hadn't realized I didn't look well.

He also said that I had hardly laughed at all when we met that day. Laughed? I asked. He said I'm big laugher - about my cancer, about all kinds of things - and he particularly appreciates my sarcasm.

He went on to tell me that he believes there is a connection medical science doesn't yet know much about or understand between good humor and health.

There has been some research about this possible connection which Washington Post reporter Marlene Cimons summarizes:

”Laughter stimulates the body’s organs by increasing oxygen intake to the heart, lungs and muscles, and stimulates the brain to release more endorphins, according to the Mayo Clinic,” [she writes].

“It also helps people handle stress by easing tension, relaxing the muscles and lowering blood pressure. It relieves pain, and improves mood. Laughter also strengthens the immune system.

“'When we laugh, it decreases the level of the evil stress hormone cortisol,' [professor of medical oncology at the Mayo Clinic College of Medicine and Science, Edward] Creagan says.

“'When we are stressed, it goes high and this interferes with the parts of the brain that regulate emotions. When that happens, the immune system deteriorates and becomes washed in a sea of inflammation, which is a factor in heart disease, cancer and dementia. Cortisol interferes with the body’s immune system, putting us at risk for these three groups of diseases.'

“For sick people,” writes Cimone, “laughter can distract from pain and provide them with a sense of control when they otherwise might feel powerless, experts say. Moreover, it’s often the patients themselves who crack the jokes.

“'Some of the funniest patients I have ever met were those dying of cancer or struggling with alcoholism,'” Creagan says.”

Sven Svebakis, professor emeritus at the Norwegian University of Science and Technology, has studied the health impact of humor for more than 50 years. Referencing a large study of more than 53,000 participants he and colleagues conducted, Svebakis told WaPo's Cimons,

”Humor also seems to stimulate memories and improve mental acuity in the elderly, especially among those with dementia.

“The therapeutic benefits of 'clown therapy' for hospitalized pediatric patients is well-established, but elder clowns are now also helping seniors in residential settings, says Bernie Warren, professor emeritus in dramatic arts at the University of Windsor and founder of Fools for Health, a Canadian clown-doctor program...

“He has seen Alzheimer’s patients engage with clowns 'and become lucid and aware', Warren says. 'There’s anecdotal evidence that suggests clowns help greatly with memory, language and communication and awareness of self in the present.'”

Personally, I find clowns to be more creepy than funny but if it helps others, that's a good thing.

All of this makes sense to me and even if it eventually proves not to help much, laughing always feels good. So I'll just go on making (mostly) mordant jokes about my predicament and be happy to have some of my doctors laughing along with me – while sometimes making the jokes themselves:

When I saw my primary care physician for the first time soon after I was diagnosed with pancreatic cancer two years ago, he flipped through a printout of my recent test results and said:

“You're very healthy, Ronni, except for the cancer.”

That was my first cancer joke and I've been finding a lot more to laugh at about cancer ever since.



Good god, A New Diagnosis

While I was celebrating the second anniversary of my Whipple surgery last week, I was handed an additional diagnosis: COPD (chronic obstructive pulmonary disease) stage 4, the most severe.

I first noticed a shortness of breath last January and it has worsened since then. I had to wait a long time to see a pulmonologist and got in last week only because the doctor had a cancellation.

Because symptoms sometimes mimic old age, COPD often goes undiagnosed until it has advanced to later stages. With diligent application of certain medications and treatments, quality of life can be maintained and extended but I doubt a marathon – or even a hop, skip and jump - is in my future.

COPD is not curable but medications can stop its progression.

One of my other physicians had prescribed an inhaler that helped ease my breathing – sort of. The pulmonologist gave me a different inhaler and as I write this on Sunday, having used it morning and evening since Thursday, I'm already functioning much better.

I can now change clothes without stopping to catch my breath. Ditto walking to the car and if I take it slowly, I can even do small inclines without losing my breath. Not bad for three days of a medication, and I'm told the effect is cumulative. Hurray.

There will be some more tests and if indicated, there may be additional or different medications. My mind seems to have cleared of some fuzziness I'd had so I'm thinking better. Well, I think so, anyway.

As part of a longer message on Friday's post, Melinda left this:

”Ronni celebrate!! You are still here when some of the experts gave you a time frame. Life is random and the universe does with us as it pleases...I say it again: it is all random and when they turn the page on The Big Book and your name is on it, that will be goodbye.”

Although I tend to say it less elegantly (“shit happens”), Melinda and I are singing the same song in this regard. If there is a mind behind the universe, he or she is keeping reasons from the rest of us. We can have no effect on when our page is turned.

At least I will have some notice – when doctors determine I have fewer than six months to live, I can begin the procedure for physician-assisted death.

So, as Melinda advises, in my quiet way I am celebrating. Having two major diseases is hardly ideal but I'm upright when I want to be and if it doesn't involve speed, I can do most of what I need to do.

[IMPORTANT NOTE: Please do not ask the name of the inhaler I am using. I never reveal prescription drug information. Also, do not recommend or name any treatment for COPD including stories of people who cured it by eating three raw onions (or something else weird) a day. Treatment is properly left in the realm of trained physicians and not a general-interest blog.]



Crabby Old Lady Tries to Manage Her Disease

TGB readers generate a lot of good ideas for blog posts, sometimes without knowing it. The latest that caught Crabby Old Lady's attention is pretty much a perfect fit with one of the tenets of TimeGoesBy – that we talk about old age things here that nobody ever tells us will happen. We discover them the hard way.

About a week ago, Patty-in-New-York left, in part, this comment:

”Reading this post,” wrote Patty, “I was struck by how complicated it is, managing your illness.”

No kidding. As soon as Crabby read that, she realized such thoughts have been rolling around in her head for some time, just slightly out of reach. Patty's note made them manifest along with instant understanding that Crabby is far from the only old person doing this.

MEDICATIONS
Start with medications. It's not just the pills themselves, it's how and when they are taken. Crabby has one that she takes first thing in the morning. Another – a double dose of two pills - to take 30 minutes before breakfast.

There are five or six more she takes at the beginning of that meal, and another pill that she must take before every meal and every snack she eats; it is crucial to replacing the enzymes her body can no longer produce on its own.

Then there are the evening pills. Some related to the evening meal, others not. Oh, and one more – Crabby takes cannabis in a variety of forms an hour before she intends to go to sleep to relieve the insomnia she lived with for many years.

Crabby counts out all these into little pillbox containers every Saturday for the coming week. She's been doing this now for two years. It's boring. Really boring. Crabby sighs a lot on Saturday when she counts them out.

Since the breathing problem appeared, Crabby has been on an inhaler four times a day which is now plugged into her schedule with the pills and altogether, they go something like this: 6AM, 7AM, 10AM, noon, 2PM, 6PM and so on. It means being in almost constant communication with a clock all day every day.

About a year ago, Crabby needed to inject a solution into the fat in her belly twice a day for two months. This is not fun and the longer it went on the fewer “clean” places there were to stick the needle. Thank god she didn't need to find a vein.

WEIGHT
As Crabby has undoubtedly mentioned, cancer and chemotherapy eat up energy (calories) faster than a healthy body and weight loss can quickly lead to frailty. Crabby is regularly admonished by the nurses and doctors to eat lots of protein and animal fat and if she is not eating enough, weight slips off her body like water after a shower.

So first thing every morning Crabby weighs herself, marks the number on the chart she keeps and adjusts her eating for any given day on whether her weight is heading up or down.

NORMAL ACTIVITIES
Start with the aforementioned shower. For reasons Crabby doesn't understand, showering leaves her breathing hard before she's halfway done. She is completely baffled as to why standing mostly still while lovely hot water falls over her body should do this.

Making the bed since the breathing problem appeared is a long procedure; Crabby needs to sit and rest two or three times when straightening the covers, and don't even ask how many times she rests while changing the bed.

Even getting dressed sometimes requires a rest period to get her breathing back on course.

Carrying groceries in from the car? Crabby used to just grab all the bags, even six or seven of them, and walk them into the house. With the breathing problem now, that many bags requires at least three trips with a 10 minute rest between each one.

Further – again, associated with the breathing difficulty - even standing still can be exhausting. It still surprises Crabby every time she washes the few dishes one person generates that she's breathing hard before she's halfway through two plates, a cup, silverware and a pot or pan.

Often, just bending over to pick up a dropped pen or pencil results in a few minutes of heavy breathing.

In comparison, laundry is relatively easy. Throw it in the washer with the soap, then dump it in the dryer. Crabby can manage folding with only a couple of rest periods.

OUTSIDE ACTIVITIES
Mostly, Crabby can manage only one trip from the house per day (she has come to think of them as expeditions) to do the grocery shopping, a medical appointment, lunch with a friend, etc.

Nowadays, Crabby takes stairs slow and easy, trying to avoid them if at all possible. Even slight inclines in the pavement for a few feet leave her exhausted and breathing hard.

And it's more than just the physical activity and driving; there is a kind of psychic fatigue at being away from home that piles onto “normal” sluggishness resulting from what it takes to get through a day now.

TIME SLIPS AWAY
All of this, and more that she skipped over telling you, eats up hours from Crabby's day, especially when she's tired enough to need a nap. But she signed up for it and shouldn't complain – at least, not too much. She can ditch all the treatment at any time and let the disease take its course. No one is stopping her.

So far she is willing to live this way although what she lately misses most is personal time. She goes brain dead by about 3:30 in the afternoon which means that in addition to household maintenance for the day, she is done with books, magazines, the internet, email, writing the blog – anything that takes mental power.

Speaking of email, a goodly amount of it arrives daily with messages, questions, suggestions and other missives from readers that need at least a “thank you” if not a longer response.

But there comes a time in the afternoon – usually around that 3PM mark – when Crabby cannot sit at the computer for one more moment without crashing. Her body is done for the day.

When that happens, unanswered email is likely to go unanswered indefinitely as it gets mixed with all the new stuff that drops into the inbox and as Crabby just described, there are many fewer hours in her day than there once were. She tries, but she hopes you will understand if you don't get an answer.

YOUR TURN
One of the few things Crabby Old Lady has learned over time all by herself is that if it is happening to her, it is happening to a lot of other people.

Crabby isn't the only denizen of TGB who struggles with managing a chronic or deadly disease (or "just" getting older) and she wonders what you do to keep it all together. How do you deal with needs, limitations and surprises old age inflicts?