110 posts categorized "Cancer"

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.

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[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?




Dreaded Diseases and Attitude

You may think you were talking about ice cream last week on the post titled, An Unexpected Anniversary, but you also reinforced a thread that's been common here since I first wrote about my diagnosis of pancreatic cancer two years ago.

Readers use such words as “honesty,” “insight,” “inspiration,” “courage" to describe my attitude. They reference “Superwoman” sometimes. They admire my efforts to “beat” cancer (which I try not to do). And they have all kinds of other ways to praise how I deal with this serious predicament. You can imagine, I am sure, how I preen when I read them, even sitting alone at my desk.

Maybe my lack of anything more than a passing response - a "thank you" here and there - has been brought on by my inability to find an adequate group of words to express my pleasure and gratitude but that's not a good enough reason or even excuse.

Such kind thoughts and words as yours, especially uttered in obvious sincerity, should not go unacknowledged and certainly not for two whole years. Yet, here we are in that situation of which I hope to remedy at least a little bit today.

Let me start in my childhood, my parents. Both were orphans with no siblings who came of age in the middle of the Great Depression. There were times they went hungry. They had few material goods and not much love from the adults in their lives.

Sometimes they related stories about their childhoods but never, ever complained. To them, it was what it was and you were expected to observe, accept and carry on. My parents believed it is up to each of us personally to do the best with what life throws our way – you cannot expect others to help.

This came to them, I think, naturally from their early circumstances and both probably would have been surprised to know that their “observe, accept and carry on” attitude was closing in on being Buddhist-like.

I didn't realize that until I spent a year or two in my twenties studying Buddhism – not particularly to become an adherent but to understand something so different from what (little) I knew then of western philosophies.

No one much loved either one of my parents when they were children. They were not hugged or kissed often if at all, and I realized as an adult that neither were my brother and I because our parents didn't know how.

They found it mildly embarrassing to express loving emotion, as I still do to a degree these many years later, although I've tried to shed it.

In my parents' early lives, I'm pretty sure that when you are scrabbling for adequate food every day, emotional issues don't matter much. And I doubt you ever forget going to bed hungry.

All that baggage my mom and dad brought to parenthood teaches you, as their child, a great deal of independence at a young age; you realize that you must rely on yourself for whatever emotional sustenance and well-being you need.

I've tried to change this mindset in a variety of ways over many years but mostly I've done "it" – that is, living - my way all these 78 years much, I guess, as my parents did. (The apple falling not far from the tree, etc.)

How far have I gotten with this exercise? Well, I'm pretty good, finally, at accepting gifts but not so much gifts of personal time as I received so much of from friends and neighbors during my months' long recovery from the Whipple surgery.

One thing that gets in the way is that I always, always worry that I will not be able to repay the help and kindness, so I had better to do without than deal with the shame if I cannot reciprocate.

But blessings on those wonderful people who force their help on me when they see the need. They are saints to get past my resistance.

To those of you who would tell me I'm being foolish, I don't disagree. I just haven't been able to change these things in my 78 years.

Although I tried to sort out some of my issues in a couple of short bursts of therapy long ago, I don't much believe in psychology, at least not to get past such emotional problems as I inherited. I've tried to be self-aware day-to-day and monitor what's bothering and not bothering me. Sometimes it has helped and just as often not.

Life is what it is. Nobody ever promised you a rose garden. Or, as my mother often said, “Into every life some rain must fall.” Just as frequently, especially when I was whining over something that had gone wrong, she would recite, “I cried because I had no shoes until I met a man who had no feet.”

Maybe more than anything else in this post, that paragraph sums up the philosophy of life that was instilled in me way back when: Buck up, life isn't easy.Deal with it.

So. I am good at absorbing the slings and arrows life flings our way from time to time but quite practically, what else is there to do? I keep going without much thought about why. It is who I am and, as far as I can remember, always have been. I was born this way.

When tough things happen, I go off somewhere alone and wallow in it. I don't want to talk. I don't want advice or hand-holding. I want to be alone with whatever the current problem is. To wail and weep can be part of the process and you would be amazed at how well that works in brightening one's days.

By the time I crawl out from under the quilt – hours or days later – I've reached acceptance. I don't claim any Buddhist influence but my pattern seems to follow their “observe, accept, carry on” belief and it has worked that way for me.

What flowed from that routine this time is a deep curiosity about what the end-of-life is like when you know it is coming relatively soon. It has become a kind of purpose for me, to chronicle these weeks, months, years(?) and I would be doing it for myself alone if I did not keep this blog.

Now, apparently, I have been granted extra time beyond what statistics suggest which I see as a gift to learn even more about life and about death. I have come to believe in these two years and since my psylocybin session last December that life and death are one but that's another story.

If some of you who read and write all these lovely words like bravery and amazing or inspirational along with other kind words, I am so pleased if I can help you on your personal journeys. Thanking you for your messages seems too little for what you have come to mean to me so perhaps this explanation is a bit more I can offer to keep with my genuine gratitude.

On that ice cream post last week, reader Carol Leskin had this to say:

”What continues to amaze and inspire me is your ability to find some ray of sunshine even when it is almost dark. In this case, ice cream. Some say a positive attitude and hope are critical to successful outcomes and prolonging life. Others think that is malarkey. You have made a strong case for the former.”

Until recently, I had spent a lifetime living the “malarkey” end of that dyad. Without feeling any need or desire to give up my atheism, I'm admitting to myself these days that maybe, just maybe, there is a little piece of the ageless universe somewhere that I belong to and am part of.

Perhaps the extra time the good medical treatment I have been receiving is that universe's way of telling me I have a bit more to do before I go. (I cannot believe those sappy words came out of me just now but there you are – strange things can happen when they tell you you're dying.)

Or, as reader Cathy J quoted author, Thornton Wilder:

"My advice to you is not to inquire why or whither, but just enjoy your ice cream while it's on your plate."

Thank you all for the good words and kind wishes with which you enrich my life (and death).




An Unexpected Anniversary

This is a big-deal, important day for me. A time to celebrate: It is two years ago today that I was diagnosed with pancreatic cancer.

Let me explain how amazing that is. Only about 10 percent of pancreatic cancer patients are even eligible for the Whipple procedure, an extensive surgery that is the only treatment for this cancer. Of the patients who undergo the Whipple many, like me, follow up with chemotherapy and/or radiation.

According to several medical websites, the five-year survival rate after a Whipple procedure is about 20 to 25 percent. My surgery took place two years ago minus three weeks from today.

The downside is that for the past five or six weeks, I have had a terrible breathing problem. Sometimes I can't get to the mailbox or even from the back bedroom to the kitchen without needing to stop a couple of times to catch my breath.

I saw the oncologist earlier this week. It has been difficult for them to book a pulmonologist in a reasonable length of time (NOT September) so they are doubling down to find an earlier appointment for me to deal with this breathing difficulty.

Meanwhile, I'm on an inhaler which helps a little but I still can't walk more than a few feet without need to stop to catch my breath. Really irritating.

The oncologist has halted my chemotherapy for two months (four infusions) because it is affecting other organs including my heart. The pulmonologist will address these breathing issues.

So I'm on hold until a pulmonologist is found to see me soon but the oncologist, referring to my life-span, appears to think I'm not going anywhere anytime soon either.

One difficulty with cancer and chemo is that both of them eat up calories faster than a healthy body but it is important not to lose weight. This is not easy since the disease and chemo also steal the patient's appetite. I have a new pill now which improves my appetite – no more forcing food when I feel full.

But here's the best news. The particular kind of chemotherapy I've been taking precludes eating or drinking cold foods and drink because the chemo, in those instances, closes up the esophagus. But now, the next couple of months without chemo means I can – wait for it - EAT ICE CREAM AGAIN.

Ice cream's high calorie and high fat count will go a long way toward helping keep up my weight and even better, it's one of my two favorite foods.

So hurray for me. And hurray for all of you who have been supportive in so many ways since this disease interrupted my otherwise long and healthy life two years ago.

Thank you all for being there for me through these two years. Maybe you'll share some ice cream with me.




A Mini-Vacation

As I mentioned two Fridays ago, at the oncologist's suggestion I am skipping one chemotherapy treatment just to give myself a little break, a vacation if you will, from the effects of the chemo drugs.

That means four weeks between treatments instead of two and today (Tuesday), I am part way through the third week giving me about 10 more days before the next chemo session.

It feels like such a luxury to have this time. What the chemo is doing for me so far – reducing the size and number of visible cancer nodules – is more than I expected and I'm a little worried that interrupting the infusion schedule might change that. But not so worried that I'm not enjoying every minute of this time.

So this is just filler and there's no need to respond in the comments – unless you've got something you want to say. About anything.




Living with Cancer

Saul Friedman

Let me tell you about my friend, Saul Friedman. Born in 1929, he was a life-long political journalist, reporting for some of the major news outlets in the U.S. - the Houston Chronicle, Knight-Ridder, Newsday and more.

In 1968, he shared a Pulitzer Prize for team coverage of the 1967 Detroit riot, for the Detroit Free Press.

I was privileged and proud when, in November 2009, Saul chose to relocate his bi-weekly Reflections column from Newsday to Time Goes By and added a second weekly column just for us TGB older folks, Gray Matters.

His final column, titled “Gray Matters: Small Miracles”, was published on 18 December 2010, chronicling his years living with cancer.

Saul died of a type of stomach cancer on 24 December 2010. I think you might like that last column – this link will take you to it.

Here we are now these almost 10 years later and it is I who lives with cancer. As Saul well knew, even when chemo or other therapies are going well and even when you feel fine between treatment sessions, the word, the idea, the reality of cancer is always hanging around making a low buzz at the edges of one's consciousness.

Since early January, I have been taking bi-weekly chemo treatments that last all of one day at the chemo clinic and continue with a personal body pump strapped to me for two more days.

So far, these have been remarkably successful, having reduced the size of some of the cancer nodules and maintained that through all the treatments so far. They also make me extra tired so that I nap a lot for a few days, kill my appetite so I lose weight that I can't afford to do and give me a few other, minor side effects that fade within a few days.

The result is that I have about 10 days between the bi-weekly chemo treatments that are almost normal. And don't think I don't appreciate it.

When I met with my oncologist a couple of weeks ago, he suggested that I might want a bit of a rest from the chemo and that I could skip one treatment giving me four weeks between treatments instead of only two.

At first, I rejected the suggestion out of hand. The chemo has been working so well, I thought, why take a chance of disrupting its efficacy. But then, as chemo brain was lifting and other side effects from last week's infusion were fading, I kept thinking about what a nice, little, two-week respite it would be.

And so I have until the end of this month to be chemo-free for which I am grateful.

It is already a good-sized miracle that I am still here. About 90 percent of people diagnosed with pancreatic cancer die with a year.

When I recently realized that it has been almost two years since my diagnosis, I went back to re-read some of Saul's columns about life, death and cancer.

Here is a snippet from one titled, “Reflections: My Companion, Cancer” about how hardly any progress had been made toward curing cancer:

”The moon landing, accomplished in eight years, the Manhattan Project, successful in less than ten years, the eradication of malaria in the U.S., cures for tuberculosis and polio, were American accomplishments in the 20th century. I see no such effort focused on the most vicious killer, cancer.

“You might say I have a vested interest in this. That would be wrong. Unless someone comes up with a magic bullet tomorrow, I will have to live with my constant companion and take my chemo and hope. But too many people, and some of whom you know, are suffering and dying around us.

“I remember what it was like before and after Salk. I’d like my kids to experience that feeling, when the fear of a disease is lifted.”

And this from Saul's final column linked above is less about reporting and more about – well, small miracles. (The “both” he refers to in the first sentence is the brilliant author, political journalist and literary critic, Christopher Hitchens, who died in 2011 of esophageal cancer.)

”Both of us owe our cancers and/or the cures not to divine intervention, but to the miracles of illness and health. They are life affirming.

“Life, illness, happiness, good fortune and bad, even good and bad presidents (I have covered) are all part of what the 11th Century Persian poet Omar Khayyam had in mind when he wrote, 'Be happy for this moment. This moment is your life.' And,

”That inverted bowl they call the sky,
Where under crawling, cooped we live and die.
Lift not your hands to it for help,
For it impotently moves as you or I.”

If, as I sometimes wonder, I am making some small difference for others as I ruminate on and write about my cancer journey, Saul even had something to say to me about that - from the same column:

”The point of all this, in a season made for reflection, is to tell the story of how it feels to become and stay old for one very lucky older American, for most of us, despite and because of illness, embrace life more fully than ever.”



The Alex and Ronni Show Plus Medically Assisted Suicide

Yesterday, my former husband, Alex Bennett, and I recorded our biweekly video. We caught up on my condition with pancreatic cancer and talked a great deal about Jeopardy! host Alex Trebeck's recent diagnosis of the same disease.

We also spent some time on climate change, on both Trebeck's and my personal feelings of our great, good luck having so many people who send us much love, concern and care about our disease. We even managed to sneak in a short mention of “Jeopardy James” at the end. Have a look:

In the comments on Monday's post titled, High Rates of Suicide Among Elders, TGB reader Ellen asked,

”Are you, Ronni, considering suicide? I support whatever decision you make. Realize also that there is a suicide hotline phone number. Call them first.”

Not “considering suicide” it, Ellen. I have chosen it – medical aid in dying - when the time comes.

Although we have discussed this before on this blog, it has been awhile. I live in Oregon which more than 20 years ago passed the first “death with dignity law” - also known as “physician-assisted suicide” and “medical aid in dying” along with a few other names.

In April this year, New Jersey's governor signed a bill making that state the eighth to allow terminally ill patients to request prescriptions from their doctors for medication to end their lives. It will go into effect on 1 August.

Of course, using these laws is a bit more complicated than just saying, “Hey doc, I'm ready for those pills.”

All the states that allow medical aid in dying have similar restrictions in place. Among them:

The patient requesting the drugs must be mentally competent

He/she must have fewer than six months to live as diagnosed by a physician

The patient must initiate the request for the drugs

The request must be confirmed by two people who are not the patient's physician nor employed by the health care facility treating the patient

If the patient wishes to proceed, he/she must wait at least 15 days before making a second request

The patient must administer the drug him- or herself

Wikipedia has a good short overview of how the laws generally work.

The State of Oregon's website, About the Death With Dignity Act, has pretty much everything you would want to know about it. Here are links to the pages about the laws in the other states that allow it, where there are also links to more resources:

California
Colorado
District of Columbia
Hawaii
Vermont
Washington

I will do a more thorough post about medical aid in dying but if you are interested in knowing more now, this will get you started.




Cancer, Chemo or Old Age?

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?




Crabby Old Lady, Sales People and Cancer

Earlier this week, in the mid-afternoon just as Crabby Old Lady's energy was beginning to wane for the day, there was a knock at the door. The conversation went something like this (paraphrased):

TALL YOUNG MAN WITH CLIPBOARD: I want to talk with you about renewable energy.

CRABBY OLD LADY: I could use some of that this time of day.

TYMWC: (blank look)

COL: Never mind. It was meant to be a joke but didn't turn out well.

TYMWC: Our records show that you have assigned only part of your electric bill to renewable energy and...

COL: (interrupting) Wait. Your “records”? Who are you? What company do you represent?

TYMWC: You wouldn't have heard of us but we've been hired to let electricity customers know...

COL: (interrupting) That's all? You could have phoned or sent an email, even a snailmail letter.

TYMWC: (word salad about how Crabby Old Lady could help save the planet just by changing her electric bill choices – sign right here, ma'am)

COL: Are you kidding? You won't even name the company you work for.

Varieties of people arrive at Crabby Old Lady's door with some regularity if not frequency. There are sales people like today's example, dubious charities and, at election time, political candidates.

Most try to make their point and they politely move on when Crabby gives them the brushoff. TYMWC was more determined than others and less polite too.

TYMWC: Are you sure you want to be left behind, to be part of the problem of climate change and not the solution?

Crabby isn't sure about this but perhaps desperate times require desperate means. If so, this still is not the way to do it.

Ticked off at TYMWC's attempt to shame her, Crabby pulled off the watch cap she keeps by the door to wear so that her bald head doesn't scare whomever is knocking.

“Let me tell you how it is with me,” she said. “Priorities change when they tell you you're dying of cancer and whatever it is you're selling doesn't interest me these days. So leave. Please leave. And take your self-righteous hubris with you.”

And without a word, he turned on his heel and walked away.

This is not to say that people with a deadly disease should use it as an emotional bludgeon. But there are some people who just deserve it. Crabby did that without any thought, on the spur of the moment and she's glad she did.




What Do You Do All Day in Retirement?

It's one of the most common questions we get in old age: what do you do all day? Working people who spend at least half of their waking hours trading expertise for money can't imagine how old people fill the time.

I don't recall specifically, but I probably wondered about that when I was working age. Now, after 15 years in retirement, I have a pretty good handle on how those former work hours (and more) easily get used up.

Cooking along with the accompanying shopping, storing, cleaning up, etc. fills a lot of time. I don't eat out as frequently as when I worked

Always a news junkie, I read it more thoroughly and carefully now – at least a couple of hours a day, often more

As the years pass, I've gradually become slower so it takes longer to do everything

These days, I tire more easily than when I was working and often indulge in an afternoon nap. An hour, sometimes two, disappear

Reading books and magazines I once had time only to skim. So do research and writing the blog, trying to keep up with email, and don't get me started on technology glitches that need attention

And so on.

A couple of facts about old people's health from the U.S. National Council on Aging (NCOA):

Approximately 80% of older adults have at least one chronic disease, and 77% have at least two. Four chronic diseases—heart disease, cancer, stroke, and diabetes—cause almost two-thirds of all deaths each year.

Every 11 seconds, an older adult is treated in the emergency room for a fall; every 19 minutes, an older adult dies from a fall.

The variety of federal, state and local agencies that deal with elder health issues have a lot of facts, some effective advice and thousands of pages of information on the internet.

What they don't mention is how busy those chronic diseases keep us, how much time they steal from our retirement.

In the two years since I was diagnosed with pancreatic cancer, the care and feeding of my remarkably decent health (I'm grateful every day) takes more time than I would ever have imagined. Some examples:

Counting those damned pills into their little boxes. Ten days ago or so I rebelled, didn't sort them for the coming week and therefore had to do it three times a day. Stupid of me. Obviously. But I needed the break from routine even if it did cause more work

As the nurses and physicians told me way back in 2017 following my Whipple surgery, I must eat a LOT of food – the point being not to fall into frailty

Both cancer and chemotherapy drugs use up energy (and therefore, calories) faster than a body without cancer so “eat, eat, eat” they old me

Eat lots of protein, lots of fat and don't worry about lack of green food. “Food is medicine,” they said to me, and “The cancer will kill you long before this diet will”

I spend huge amounts of time preparing food to try to eat when I've lost my appetite for three or four or five days after chemo.

Simple household chores take what seems like forever particularly for a few days after chemo. I need to sit down to rest twice during those days while making the bed. Changing the bed? Don't even ask

Let's not forget two full days a month are gone – seven or eight hours each – of chemotherapy. Sometimes I'm exhausted enough for bed all day for two or three days afterwards and sometimes not, with no way to predict

Another five or six appointments each month with half a dozen medical specialists who seem to be required to treat cancer. It's a good thing I've come to like all these people – and the others, nurses, medical assistants, schedulers, etc. - and in a certain sense they have become friends

I wear out for the day by mid-afternoon which means I must get all the blog work and everything else in my life done by then. By 3PM, I can't even focus long enough to read anything longer than a short magazine or newspaper story

Enough. Any of you who have your own chronic disease(s) to manage every day know all about this.

Given that I have lived longer than the doctors imagined I would and who are predicting even more healthy time for me, I feel like a churl when resentment of the hours and days the maintenance involves overtakes me.

I try my best to get past it quickly. I can't be the only old woman (or man) who sometimes longs for the carefree, healthy life I lived for so long. What about you?




Cancer Update Plus The Alex and Ronni Show

Thank you for all your lovely birthday messages over these past couple of days. Friends, my son, grandson and neighbors came by on Sunday with lots of wine and food and a good time was had by all.

My apologies for the emails I have not answered. I've been extra tired this time from the chemo infusion last Thursday and I just ran out of steam. Know that I appreciate every one of you and read every message.

I never believed I would make it to this birthday, number 78, and that's not hyperbole. I didn't think I would live this long but here I am and I'm going to stop predicting – what will be will be.

And now I have some cancer news.

Remember two months ago when the CT scan showed that cancer cells had shrunk and some were not visible at all?

This time, last week, the new scan was almost as good as that one – so much so that the oncologist ordered up the next scan to be done in three months rather than the two we've been doing. And he said this too: “You're going to be with us for a good while yet.”

Woo-hoo.

Okay, I don't know the definition of “good while” and, probably, the doctor doesn't either. But it's good to hear anyway.

My former husband and I recorded our bi-weekly chat, The Alex and Ronni Show yesterday. It says some of what we've talked about in this post, but here it is.

It was a nice little vacation from blog work but I'm happy to be back in the groove.




When Cancer Becomes the Norm

On Saturday, I woke as usual at about 6AM, worked my way through my customary personal hygiene routine, dressed for the day and went directly back to bed.

You can be forgiven for thinking that's hardly noteworthy but you might change your mind when I tell you that in my 78 years, I have never – not once - done that.

That's because there is no telling nowadays when I will get tired; I've learned to indulge myself when I need to.

I've had more time than I realized to slip into that frame of mind. It was a surprise when, a few days ago, I noticed that it has been nearly two years since I was diagnosed with pancreatic cancer. Twenty-two months to be exact.

Few people in my predicament live that long. Pancreatic cancer is one of the rarest and most deadly cancers - only 10-15 percent of patients are eligible for the Whipple surgery I underwent as soon as the disease was discovered. Even with that, only 25 percent of people who have the Whipple are alive five years later.

But here I am, grateful for the additional time granted me but wondering if I am using it wisely. (Dear god, as I lie dying on my last day, I do not want to be shouting, “Wait, wait, there's something I forgot to do...”)

If I believed in other-worldly things, this feeling that I may be neglecting an important task or obligation, even if only for myself, would exist in a different context.

But either way, death is one of the two biggest events in life. I can't recall the first and I don't want to make a hash of this last one.

While I've been working through all this, the care and maintenance of cancer has become my norm, taking up more time than I would have guessed before this happened to me.

I've become accustomed to being bald – I hardly notice my naked pate in the mirror anymore but it's a whole different thing to enjoy wearing hats versus needing one so you don't scare people..

Counting out 16 pills a day into their tiny, little boxes gets more boring and therefore irritating each week. Worse is remembering to take them at the right times.

Keeping daily records of weight, blood pressure and any pain takes time I resent and too often I forget to do.

A daily mental inventory of how my body is functioning helps me manage daily life and still get everything done.

For example, for a few days after chemotherapy, my breathing problem is at its most difficult so I now organize trash take-out, vacuuming and bed changing to better days when I don't need to stop and rest two or three times in the middle of each task.

Tracking my body's requirements – when to rest, when to eat, what to eat, when to contemplate my predicament, etc. - helps keep me as healthy as possible.

Lately, I've been thinking more frequently about when it will be time to let go of all this and say goodbye. I feel good enough most of the time not to need to decide that right now but I ask myself if I will know when the time comes. I used to believe I would know; now I'm not so sure. I'm working on it.

Until the past two years I never did any of this. Now it (and more) is burned into my routine as much as brushing my teeth. I'm not happy about it but it's the trade-off for wanting more quality time.

I know many people besides me live with cancer or a different chronic disease or condition, and having now been there myself for awhile, I have gained enormous respect and admiration for them.

This isn't easy but we are stuck with it, and we are all old enough to know that sharing these things helps a lot.

As for the popular admonition not to talk about our troubles – phooey. When you had babies, you talked about about babies. If you got divorced you talked about that. When your kid got married, we couldn't shut you up. All to the good.

Excuse me now while I have a nap.




Cancer Test Anticipation

Back in mid-February, after two months of treatment with my then-new chemotherapy regimen, I reported this news from my doctor:

“'The CT scan shows the size of the lesions in your lung have decreased by half and some are no longer detected at all,' said the doctor. 'The one lesion in your peritoneum is not visible.'”

Woo-hoo. I don't have words to describe my relief and pleasure when the doctor told me that. Until that moment arrives, you wait and wait and wait, rocketing back and forth from fear and despair to confidence, then suddenly the answer is right there, right now, and in this case, it was spectacular.

Now, an additional two months have passed and it is time for another CT scan next week. I thought the wait period, having been through it before, might be easier this time, but no. As the date gets closer, I worry. I don't seem to be able to control that, but I do my best to enjoy these good days I'm having.

In a week or so, I'll have the new CT scan results. On my best days I believe the new pictures will be a repeat of those in February. Meanwhile, however, excuse me while I go worry. (I know I'm being an idiot but there is a little part of me over in a corner of my brain who believes worry is a requirement for making good things happen.)




Robot Doctor Tells Man He Has Only Days to Live

Three medical professionals walked into the examination room where I was waiting for them late last year – my oncologist and a registered nurse, both of whom I knew, and a social worker.

The four of us sat close together as the oncologist told me my cancer, after a period of remission, had reappeared in a lung and in my peritoneum, and that it could not be cured.

Particularly after a period of several months when no cancer had been detected, the news was, if not entirely unexpected, a stunner. I was shaken and I cannot imagine getting through the ensuing conversation about treatment possibilities without the doctor holding my hand.

That simple human gesture, the warmth and reassurance of another person's touch, is what anyone needs when being confronted with terrible news.

Nevertheless, last week, a dying man and the granddaughter who was with him in a California hospital room was informed he had only a few days to live by a robot doctor. Take a look at the phone video recorded by the granddaughter:

Seventy-eight-year-old Ernest Quintana died two days later. As CBSnews.com reported:

”Granddaughter Annalisia Wilharm, 33, was alone with Quintana when a nurse popped in to say a doctor would be making his rounds. A robot rolled in and a doctor appeared on the video screen. Wilharm figured the visit was routine. She was astonished by what the doctor started saying.

"'This guy cannot breathe, and he's got this robot trying to talk to him,' she said. 'Meanwhile, this guy is telling him, “So we've got your results back, and there's no lung left. There's no lung to work with.”

“Wilharm said she had to repeat what the doctor said to her grandfather, because he was hard of hearing in his right ear and the machine couldn't get to the other side of the bed.”

A hospital spokesperson later apologized to the family for the insensitivity but went on to say that the characterization of the live video physician as a robot was inaccurate. According to CNN,

”Gaskill-Hames, the hospital spokeswoman, said the health care provider is 'continuously learning how best to integrate technology into patient interactions.'

"'In every aspect of our care, and especially when communicating difficult information, we do so with compassion in a personal manner,' she said, adding that the term 'robot' is 'inaccurate and inappropriate.'"

In what world, I wonder, is it good and right and compassionate to hear you'll be dead in a few days from a screen? I can't be sure but none of the reports I read of this incident made mention that the “robot” checked to see that the patient was not alone when this news was delivered.

Having my hand held by the doctor while she told me about the change in my condition made all the difference to me. I'm not sure I could even have parsed the new diagnosis if I had been alone with a robot when the words were said. And how would I have asked questions?

For the record, I'm not against telemedicine in general; I think there should be more of it.

Often enough when I see one of my physicians, it's not for an exam or painful-to-hear information; it's a discussion of how I'm doing, how my body is tolerating chemotherapy, what concerns me that day.

We could as easily have that conversation via video and make an in-person appointment if that became necessary.

But to repeat myself: In what world is it good and right and compassionate to hear you'll be dead in a few days from a screen? And why wouldn't hospital personnel, who work every day with ailing, vulnerable people, already know the answer to that?