ELDER MUSIC: Twilight Zone
What Others Say About Death

Living on the Edge of Life

Pancreaticcancerawareness160leftTomorrow will mark six weeks since my surgery for pancreatic cancer and I think I am doing remarkably well. The long incision down the middle of my torso is healed. Hardly any pain related to the surgery remains.

Although I am still unwilling to lift anything heavier than six or seven pounds, I am doing everything else for myself now, if a little slowly, and I drove for the first time over the weekend. It went well.

The overwhelming fatigue has lifted but by late afternnoon, I'm done for anything more than lying around, and that gives me plenty of time to ponder my predicament: the malignant tumor was successfully removed from my pancreas but there are those three pesky lymph nodes (and more that were not tested?) where the pathologist found cancer cells.

In about ten days I will spend time with the medical oncologist to find out all about what chemotherapy can do about that. Having that treatment is, of course, my choice but recovering now from surgery that was the hardest thing I've ever done, I doubt I'll reject giving chemo a chance to work.

Meanwhile, I am living in a sort of twilight zone of an unknown precarious future. Sometimes I try to imagine what the cancer looks like and picture it gone, poof. Other times I think of it as an enemy, as I would any person who is trying to kill me, that I must fight with all my might.

Neither of those work for me, especially the second. I can't seem to rustle up a mental scenario of bodily war against cancer. Lack of imagination, I suppose.

Many people have told me I'm brave and courageous but I don't know about that either. Bravery, to me, means lack of fear in face of danger and that's certainly not true of me right now. I am definitely afraid of the future.

Having courage, on the other hand, is to take on a dangerous adversary while also feeling overwhelming fear.

You may think that, particularly in agreeing to chemotherapy to fight the cancer, I am being courageous and for me, chemo is as frightening as cancer itself.

But I see it differently: that I must live in the world as it is and what it is now - a cancer that can kill me - doesn't change whether I am afraid or not so courage doesn't enter into it.

The possibilities for my future are simple and obvious:

The chemotherapy works and with or without additional treatments, the cancer goes into remission and am granted some reasonable number of additional years

The chemotherapy doesn't work and I die sooner rather than later

It's such a mystery, death is. Our culture sees it as the ultimate adversary to be fought against relentlessly. My current fear notwithstanding, I believe death is the natural order of things – nothing else makes sense to me.

Further, I've always thought that as the time of my death approaches, I would gradually lose interest in the world around me – I watched that happen to my great aunt and several friends who died decades younger than she did. But the thing is, faced with this medical catastrophe, I haven't lost interest.

Well, maybe I have to a degree. As I have recovered from the surgery, I have lost interest in most non-news television, even many of my favorite shows. Suits, for example, seems much less compelling this season, less well written, more soap opera. Is it them or is it me? I can't tell.

And it's not just recovery that has slowed me down. I take time outs during the day to try to think about how I want to spend the time I have left, and about dying - what I need or want to do to be ready for it.

I don't get much further than the idea I hold that death is a normal, peaceful process and that I would like to be awake as I die – to experience it.

Mostly, however, I have not come to terms with dying yet, which leaves me living on the edge of life. It is impossible to imagine that the world will go on without me to keep an eye on it. Silly, of course, that. And so many other unresolved issues to work on. But just for today, I have places to go and things to do, fully engaged as though this hasn't happened to me.

"Life is pleasant. Death is peaceful. It's the transition that's troublesome." - Isaac Asimov

Comments

I don't think bravery is a lack of fear in the face of danger, but the keeping on in spite of the fear. I think you're very brave, and this post illustrates that beautifully. You're looking at difficult choices, and you haven't given up. That's bravery. You inspire me.

This is a curious time for someone in your situation. For myself, I encourage you to continue to get as much information as you can handle to make informed choices, but to always live your life. It isn't a battle. Whether taken by cancer or a meteorite strike or a slip and fall, winning is pretty much out of the question, but how we live out the rest of our lives remains for us to choose as it always has.
Thank you for sharing your journey with us.
Keeping good thoughts for you.

Regardless of my health, each day feels more and more, as you say, "like living in a sort of twilight zone of an unknown precarious future." A madman at the helm of the United States, North Korea launching missiles that we are told can reach any target in the U.S. Craziness going on all around. But John Oliver was back last night and that was fun.

Cathy, I agree wholeheartedly. I’ve likened it to a psychotic break from which I’ve yet to recover. My own diagnosis of an incurable cancer just adds to the sense of unreality.

Ronni: Try to ignore the horror stories about chemo. I'm not saying it's easy; I'm almost through chemo, on the last of six rounds, and it's been rough sometimes, but drugs have helped me withstand the worst symptoms. Anti-nausea pills have helped a lot. Good nutrition and plenty of rest and sleep are crucial. Be good to yourself, above all.

Hi Ronni: long time reader here. The NYTimes recently published a review of a book "Dying: A Memoir" by Cory Taylor -- good review. Not sure is you're up to reading but thought I'd pass this along in case you're interested.

think of you often and wish you well,
Marcia

My women's group of 30 years, all becoming daily more aware that we are aging and the world is moving on, had a discussion of "the meaning of our lives now" a few days ago. All I could come up with is that the meaning of living is -- living. We live and we die and the world goes on. I don't know whether this relative equanimity will survive disability and pain if that comes, but I hope so.

I love your life, Ronni. And your life is you!

Ronnie, You are so human with such great heart!

I'm guessing you get many recommendations and I'm sending one too. Angeles Arrien, archaeologist and author, was one of my favorite teachers - she was so smart; she shone with humor and experience. Maybe you'll enjoy this tribute to her and a couple of her short talks about living deeply - living on fire!

http://marilynschlitz.com/a-tribute-to-angeles-arrien/

I read this morning that the NW is in for a blistering, record-setting week, so take care of yourself and Ollie. Now might be a good time to head for the clam-digging coastline? (Yes, along with a sizable chunk of Portland, no doubt)

You sound good. Considering. The transition phases are often the toughest times. That blasted not-knowing. But they also take us to a new knowing of our self that could be an opening to welcome discoveries.

Enter the days with your positive energy and follow the good advice of Hattie who's been there.

I hope in the future, if you are inclined Ronnie, you will talk more about "...I would like to be awake as I die."

Thank you so much for sharing your thoughts. You may not feel brave, but you do not wince, you don't hide your head in the sand, you don't use euphemisms. In that way you make the rest of us braver.

Ronni: If you can get access to it, I encourage you to read "Don't Tell John McCain to Fight his Cancer" by Arthur Caplan, 7/25/17. Pam Harms

Ronnie, you are a trooper. I admire your courage. I'm not facing a devastating disease and I don't think TV is very compelling. It often bores me. I've begun listening to podcasts. God bless. Love the blog.

Love the Asimov quote. And you're not at that transition stage but doing what you do best.....having an unflinching look at "what is".

I think Simone has a point: listen to what Hattie says. Like you, she is fully engaged and writing in her inimitable way while dealing with her illness. Both of you, an inspiration.

Congratulations on driving. Love the quote at the end.

I have two friends in their mid-seventies who have diseases or conditions which are untreatable aside from symptom management and are terminal. Both are dealing with them admirably. I don't know if it's bravery or acceptance, but neither has lost any interest in daily activities. I suspect that disengagement is more a result of advanced old age than any particular disease process.

I'm uncomfortable with the 'battle and fight' terminology used with cancer. Mukherjee knew what he was saying when he called cancer the 'Emperor of All Maladies'. It feels much kinder to simply say "I'm sorry you're having to deal with this." With all that said, we want you to use the chemo available to you and hope it works well for you.

Loved the quote by Asimov,it sums up our sojourn in a nutshell.

I do have one for you,it has helped me whenever I feel a bit dejected.
"Rejoice in hope,endure in affliction,persevere in prayer."--Romans 12:12

Your thoughts about life and death are much like mine after my diagnosis. Pretty typical under the circumstances, I imagine.

I grew up thinking chemo meant non-stop nausea and vomiting. That was my biggest fear. But they have very effective drugs now to prevent that. I thought of it as poisoning whatever cancer cells might still be lurking around, particularly in the nodes that surgery couldn't reach. Radiation fried any remaining cancer cells. Cut, poisoned, and fried. I dare any of those cells to come back.

You continue to be in my thoughts all the time, Ronni. Thank you for sharing your feelings, fears and hopes with all of us. Whether you call it courage, bravery, or humanity--you're inspiring. Love, Kirsten

As with you, I do not thing waging a battle against cells is effective in reducing the inflammation that is cancer, in regards to imagery and visualization. Perhaps a picture of some healthy cells, imaging that, asking your a bit beleaguered body what it needs from you and vowing all day to give it the ease and loving kindness it deserves. I also hope that when it is time to die that I don't follow the old "Rage rage against the dying of the light" war against what is and what is real, although I see evidence in every day life of how I rage against some of lifes much easier challenges. Just sending you love and light, hearing your voice in the universe is a gift to us all.

When I think about death (and I believe that's the end...nothing after) , I console myself with thinking of all the millions that have gone before..some young, some very old and most no longer remembered. This sort of puts it in perspective for me.
I also think we as humans, can't conceive of total non existence. We some how imagine we will "know" we are dead and feel loss and regret. We just can't imagine nothingness, myself included.
So enjoy what time we all have left, even if it's just sitting in a garden or in front of the TV eating a bowl of ice cream.

Bravery and courage are synonyms. Just saying. Carry on dear heart.

I had the thought reading your status update and gaining such comfort from it, that you should incorporate your writings into a book on aging.

Indexed as to topic. Hair loss, incontinence, teeth, cancer, etc.

You've written so wonderfully on so much and continue to do so.

XO
WWW

ou are doing remarkably well and recovering faster than anyone expected, Ronni. I am so happy for you and I think your positive attitude has a lot to do with that. You have fought this battle like the trouper you are and this will continue to be the case as you continue to fight this dread disease.

No one knows the time of our death, but we do know it will happen to us all. Some factors like lurking cancer cells or very old age make us aware that it could happen sooner for us than for others. From family stories and my one experience of being present when someone dies I do believe that each death is as unique to each person just as that person was unique in life,

One thing I do know is that it is a lonely experience. Even if you are surrounded by loved ones it is something you are doing alone.

The finality of death and the knowledge that you will be no more is disturbing. I know what you are saying, Ronni, because when everyone thought I was dying (including me) that was the most upsetting thought to me. Mary said it best.

I am still interested in life, but no longer miss going out and enjoying travel, concerts, movies and other things that made life so pleasurable. I don't know whether this is my ability to accept life as it is or a preparation for leaving life. Little irritations are now unimportant and that's a good thing.

Facing your immortality changes your priorities, but life goes on and you must, too.

Ronni I see you as a strong woman. A well educated woman with the capacity to think, reason, question. I have met those in denial. There are those who won't consider writing a Will for fear it will lead to an early death for them. I have even shared with them what we had to go through as our son had not updated his Will. Granted I'm sure he didn't know he was going to die at 44 yrs.

I pray writing your thoughts is a help to you for surely it is for others. :-)

Dear Ronni:

Choosing to do chemotherapy is your choice, of course. However, there are other therapies out there these days that have [as much] success rate as chemotherapy. (I bracket the words "as much" because 1) an oncologist will never say that chemotherapy "cures"; only that chemotherapy "may" cause the cancer to go into remission, and 2) there are many more people who choose chemotherapy than alternative or more innovative approaches to combatting cancer cells which would distort statistics. That being said....) you may be too tired to do the research into what else is out there. But you may wish to look at the Sloane-kettering Cancer center to see what they have been doing: www.mskcc.org and then go to the pull down window that says "for adult patients" and then click on cancer types.
I would urge you to make sure that you come "armed" with your own knowledge prior to meeting with your oncologist and even, if you can, bring an impartial third person to listen to the discussion (preferably a nurse, if you have any friends who are nurses). It can be overwhelming to be in that environment. Also, you do not need to make a decision during that meeting and it might be better to go home and digest the meeting before calling back.
I am sure advice has been given a-plenty, but it is what I can offer you and I hope it is useful to you.
Warmest regards,
Yvonne

Brilliant and truthful as usual. Right, I totally get the not being able to get behind the fighting the cancer as the enemy regimen. I tried that once, totally failed, but lived to tell it. Starting back then I decided to love myself and my body and mind as much as I was able, and Thich Nhat Han and others are right when they say that it not only works for us, but casts it's positive energy on those around us. So if I visualize, I visualize the situation healed or healing.

As to death, I've read a lot, thought a lot, come close several times, would like to live 5-15 more good years, and though it's still a complete mystery to me, I believe it a worthy endeavor. We came into this life scared, crying, thrashing our wee arms and legs, then found it was pretty great, mostly. I gave up on the Dylan Thomas "rage, rage against the dying of the light," many years ago, in fact in two instances, I was definitely moving into the light. I'm with you, dying is, at any point in our life, in any moment, a possibility, and is in the natural universal rhythm. Like being born.

I hate that this has happened to you. It sucks, it really does. I hate even more that we have spent millions (if not billions) of dollars on cancer research over the past 5 or 6 decades and have only begun to scratch the surface of this insane scourge of mankind that seems to have no rhyme or reason who it strikes. The young, the old, the rich, the poor, the righteous and the dishonest. In a way it might be the only truly democratic thing we have left in this world.
In the end, it will be your own body and its ability to fight this disease that will determine the future. Your job is to give it everything it needs (good food, exercise, medication) to help it win that fight.

Ronni

About death I like to think like Socrates: nobody really knows how life after death is.
If life after death does not exist, OK.
If it exists I will probably be with people similar to me, with lots of things to discuss.

I appreciate very much the way Levinas thiks: Dying, I will loss the opportinity of helping the people that I love.

You will still live many years

Love

Beatriz

Ronni

About death I like to think like Socrates: nobody really knows how life after death is.
If life after death does not exist, OK.
If it exists I will probably be with people similar to me, with lots of things to discuss.

I appreciate very much the way Levinas thinks: Dying, I will loss the opportunity of helping the people that I love.

You will still live many years

Love

Beatriz

One good thing to come out of this is that your writing has been at it's most compelling.

Ronni, I too want to be awake when I die. I want to see (and feel) what happens! Jacques' mother, several years before she died, said, "Ich bin neugierig über dieses letzten grossen Erlebnis." I am curious about this last great experience. That really endeared her to me. Curiosity is a kind of alchemy. It can make friends with the fearful.

I can't say it as well as those who have commented before me -- we all love you and want you to succeed. We would miss you terribly if you went away, but that's pretty selfish of us, isn't it? We just want what's best for you...

Ronni, it's good to read you. Good to know you are almost done with pain and that you were able to drive your car again.
And yes, I think you are brave and determined. It's important, so keep it up.

Thinking of you, your writing, your thoughts, your level headedness and mostly your honesty as I contemplate my own demise but of course under quite different circumstances and certainly much less discomfort and inconvenience but many of the same thoughts enter my head as well.

So glad pain is all but gone, and you are less dependent on others and of course the driving.
Just let me know when we are to head out for that drive to Cannon Beach, all I can offer right now, everything important has already been said

Ronni, you are so honest about how hard it is to come to terms with dying and death. I've never been able to do this, no matter how hard I try. Comforting words don't solve that uncertainty and fear. My sister helped me when I asked her, "When will I be ready to die?" "When you die," she said. That's the nearest I've got to understanding or accepting the inevitable fact. It's very generous of you to share the unvarnished reality of your experience — thank you.

Ronni,
You are such a blessing to me. I feel so fortunate to know about you. Reading your articles are helping me deal with my illnesses. I am not courageous like you are, I'm one of those horrible patients, every physician's nightmare. All medical procedures scare me and make me too nervous. Needless to say, being this way makes everything so much more difficult for them to do their job, and for me of course, than what it actually is. Your honesty moves me so much.
I pray that healthy years be added to your life, quality years. What you are doing is really big, and you are so needed in this crazy world we are living in. You are a beautiful spirit with such a beautiful way of looking at the world, and I don't want you to go now, I need you. Please, please continue positive and courageous.
Love, Raquel

Through reading about your cancer experience, I am learning that in addition to the physical stresses of cancer, there is ongoing emotional strain. Being hopeful for a recovery or long remission, but also considering the alternative. And in the meantime, dealing with those sharing their own opinions/experiences that may or may not be helpful to you. Fatigue seems normal given the circumstances.
I cannot be there to help but I am sending a small donation through the donation button on the blog. I would encourage others to do so.

What Lisa said.

You continue to amaze and inspire, and we are grateful.

So glad to read that your progress is going so well...good news indeed.

I think it's important to take care of all matters dealing with end of life and then forget about it! I'm too busy living to think about death all the time! We have a kitten, and his antics keeps us endlessly amused. Today I had the opportunity to tell the oncology nurse how much I appreciate her.
I will be on my last round of chemo this week. And I'm feeling pretty good. Not well, but good enough to enjoy life, mostly.

"I don't mind dying. I just don't want to be there when it happens." Woody Allen
Maybe he was riffing off Asimov, but that sums it up for except for this addition:

Everyone must insist on pain killers towards the end. My mother had a horrific
death which I witnessed, but did not have Power of Attorney and those who did
didn't want to bother the doctor over the weekend. She had been on morphine
after a fall but was taken off it at 96 by her physical therapist who said the
morphine was "interfering with her ability to re-learn how to walk." So she
died in agony over a weekend while my POA sibling kept saying "it's referred
pain" -- huh? not real pain, referred from somewhere, like in your mind? and
then "it's too hard to get anyone into the hospital over the weekend," which I
do not dispute. So she died moaning in her weak voice "no more, no more" in the early morning Monday. Probably just as well she wasn't sent back to the hospital to be kept alive in whatever shape. But there was no need for her to die in such pain except for the nasty combination of circumstances. She was "wait listed" for hospice but since she lived in an area full of older people, she didn't make it onto hospice care. Be sure you have access to painkillers along the way and to all the morphine you want at the end. And beware of your POA people.

Thanks you so much for writing so honestly about your experience and feelings. I find your blog helps me deal with these thoughts that are difficult to share with
other people.

My mother always said she wasn't afraid to die, she just didn't want to miss anything. That's how I think to. I've always thought we never really know how we'll feel or think about many situations until we're having the experience.
Recalling some of what I think you had written early in my blogging years here, I wondered what your view would be now under these circumstances. Thanks for sharing your thought processes. Continuing to send positive thoughts your way.

Hug. More if needed.

Thank you for your post, Ronni!

I had a Uber driver in Wichita, KS last year who was diagnosed with kidney cancer 2 years before. He was a truck driver. He drove all over the U.S. He loved feeling the road under his wheels, he said, so here he was in a brand new Prius driving for Uber.

Good luck with chemo! Prayers.

Have minivan. Will remove car seats. Will drive you!

I have just re-read your post from yesterday and then the comments from your worthy readers, but, Ronni, I am SOOOOOOOOOO impressed. By your physical and mental recovery, by your ability to tell it like it is, whatever it is, by your so-far-from "disengaged" approach to everything (no matter what you say about your afternoons).

I guess, however, that emotional recovery and mind meanderings and stressful decisions are pretty much where they always are ... right in one's face.

Thank you for all your gifts. Like WiseWebWoman requested, and as I have begged for in the past, should you ever feel you need another "project", a book collecting your posts would be a splendid gift (however selfish of me it is to want more).

What Bruce said.

Perfect.

XOXO

Your Montreal Fan Forever

Just as you were having your surgery I began a 12-day stint in two hospitals, life flight and all the exhausting tests anyone could dream up. I have a very rare leukemia and begin treatment (oral chemo) within the week. Coming here brings great solace and I thank you. I'm with Ms. Sontag on that illness is NOT a metaphor, nor do not think of myself as in a fight. Letting in all the good and healing and love, and sending it along to you.

Hi Ronnie--

I have had cancer twice... uterine, and bladder. My attitude wasn't heroic, perhaps delusional, but not heroic. I said to me.... OK... all cut out, and we're done with it. In the case of the uterine cancer, I chose to have radiation..... but my attitude still was " all cut out, and now radiated just in case."

Can't say I wasn't frightened, but I guess I figured " out, and gone." I believe it, and still believe it today.

Can't do anything else... just believe it. And it's been true for 24 year on the uterine, and 6 years on the bladder.

Believe....

Vicki

Good thought, Vicki, thanks.

I can only speak for myself but I feared Chemo more than my cancer. With the newer drugs they have today to deal with the side effects, for me, the Chemo wasn't that bad. I think all of us are much braver than we imagine ourselves to be. Your doing really good Ronni and you will make the decision that is right for you.

On the subject of death I don't think I could add anything to the excellent comments already.

Thank you so much for sharing your journey so beautifully and bravely! You give voice to so much we all think about, but seldom discuss. Wishing you a speedy recovery and many more years of inspiring conversations.

This just came in my inbox, and I think it's a nice alternative to other comments, most of which I totally agree with. It has nothing to do with death--it has to do with life. And now, for a change of pace:
By Garrison Keillor August 1 at 4:34 PM
So. We have a vulgar, unstable yo-yo with a toxic ego and an attention-deficit problem in the White House, and now we can see that government by Twitter is like trying to steer a ship by firing a pistol at the waves — not really useful — but what does it all add up to? Not that much, if you ask me, which you didn’t, but I’ll say it anyway.
We will survive this. He will do what damage he can, like a man burning books out of anger that he can’t read, but there will still be plenty of books left.
I went to my high school class reunion last week and the gentleman’s name never came up. He has been front-page news for months, every bleat, blurt, yelp and belch. His every gaseous eruption is played over and over on cable news. But among my old classmates, not a word. They spoke with awe and reverence of their grandchildren (we’re the class of 1960), some about travel, plumbing projects, beloved old cars, stories of youth and indiscretion, nothing about death or President Trump. After five hours with them, I have no idea whether they lean left or right. Remarkable.
Marvin Buchholz and Wayne Swanson are still farming, though they, like the rest of us, are 75 or close to it. They both know what sweet corn is supposed to taste like. Dean Johnson is still tinkering with cars. Rich Peterson is in terrific shape, thanks to teaching physical education all these years. His parents ran Cully’s Cafe out back of the Herald office where I wrote sports when I was 16, and I’d come in to eat hot beef and gravy on white bread and potatoes while reading my own immortal words in black type. They loved that boy, and he turned out well.
Bob Bell and I discussed some classmates whom I considered lowlifes and hoods because they wore black shirts with white ties and drove old cars with flame decals and loud mufflers, but he saw a better side to them and stood up for them, and good for him. His dad was an attorney, so Bob grew up with the idea that everyone deserves a good defense.
Carol Hutchinson was a librarian, Vicky Rubis a schoolteacher, Mary Ellen Krause worked at the town bank, one of the spark plugs who kept our hometown’s enormous Halloween parade going all these years. Carl Youngquist and I remembered our basketball team of 1958, a good bet to win State, but we lost in the early prelims to a bunch of farm boys from St. Francis. St. Francis! It was like Rocky Marciano being KOed by Mister Peepers.
It’s a privilege to know people over the course of a lifetime and to reconnoiter and hear about the ordinary goodness of life. By 75, some of our class have gotten whacked hard. And the casualty rate does keep climbing. And yet life is good. These people are America as I know it. Family, work, a sense of humor, gratitude to God for our daily bread and loyalty to the tribe.
If the gentleman stands in the bow and fires his peashooter at the storm, if he appoints a gorilla as head of communications, if he tweets that henceforth no transcendentalist shall be allowed in the armed forces, nonetheless life goes on.
He fulfills an important role of celebs: giving millions of people the chance to feel superior to him. The gloomy face and the antique adolescent hair, the mannequin wife and the clueless children of privilege, the sheer pointlessness of flying around in a 747 to say inane things to crowds of people — it’s cheap entertainment for us, and in the end it simply doesn’t matter.
What matter are tomatoes. There is an excellent crop this year, like the tomatoes of our youth that we ate right off the vine, juice running down our chins. There is nothing like this. For years, I dashed into supermarkets and scooped up whatever was available, tomatoes bred for long shelf life that tasted like wet cardboard, and now I go to a farmers market and I’m astonished all over again. A spiritual experience. The spontaneity of the tomato compared to the manufactured sweetness of the glazed doughnut. An awakening takes place, light shines in your soul. Anyone who bites into a good tomato and thinks about Trump is seriously delusional.
I hope you can eat fresh tomatoes, Ronnie. If not, maybe a juicy peach.

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