ELDER MUSIC: Classical Whatnot 3
A TGB READER STORY: Following Doctor’s Orders – Unexpectedly and Reluctantly

When You Stop Chasing the Wind

Saturday was the third anniversary of my Whipple surgery, that 12-plus-hours-long procedure available to about 20 percent pancreatic cancer patients. The procedure involves the removal of part of the pancreas, the entire gall bladder, the duodenum, a portion of the stomach along with a few other bits and pieces.

The five-year survival rate after the Whipple is 20 to 25 percent. Given that the five-year survival rate for all pancreatic cancer patients is under 10 percent, I have been living on golden time.

(I've sometimes wondered why the medical community chose five years for measuring survival rates. Three years with such a dire disease seems pretty good to me.)

The odd thing is that I don't recall noticing the date on the first and second anniversaries. Surely I must have made note of them but who knows. I've discovered during this journey that my mind sometimes has a mind of its own.

On the day I was given my diagnosis, I had no trouble deciding I would not pursue what are politely called “alternative cancer treatments” but should be labeled quackery. (See this report on a 2019 Yale Cancer Center study of alternative cancer treatments.)

My reasoning then was (and still is) that the doctors and nurses who have been treating cancer for years know a whole lot more than I do about what works and what doesn't and that if there were a miracle cure, we would all know about it.

So I put myself in hands of the medical people, followed their instructions carefully and here I am these three years later.

What is far less straightforward and for which there are no doctors and nurses to help, is the question of how to live with a deadly disease day in and day out for whatever time is granted. Shouldn't something change?

For nearly six months after the Whipple I was in recovery mode with energy and physical capabilities severely limited. Without putting a whole lot of thought to it during that time, I continued to write this blog - sitting at a computer doesn't impinge much on one's body – as I gradually regained my strength.

The doctors and particularly the nurses were good at explaining chemotherapy side effects when that treatment was started and except for two or three days after an infusion, life was close to what it had been before cancer (and in 2019, COPD) intruded.

It was then that I began thinking more earnestly about whether I was spending my time in the best possible way. Generally, I've settled for continuing to do the simple things I've attended to each day since I was first made aware of the cancer.

Still, death seems to be such a monumental event that it should require a proportional response. I'm not saying that's true, just that it feels that way sometimes and the intrusion of that thought interrupts the comfort of my routine.

Neurosurgeon Paul Kalanithi came close to saying what I think I am experiencing – or, beginning to experience - in the last entry of the journal he wrote which was published after his 2016 death as When Breath Becomes Air:

”Everyone succumbs to finitude,” he wrote. “I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past.

“The future, instead of the ladder toward goals in life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.”

Since I'm still asking the question now and then, I haven't reached the state of being-here-now that Kalanithi describes. But I think he's right and I also think that if I'd just leave myself alone, I'm heading in that direction and doing just fine.

Comments

Sending love your way dear Ronni.

Your sober NOT SOMBER spirit dancing in your posts lifts my own spirits and I'm hoping yours, too, as you write, "...I haven't reached the state of being-here-now that Kalanithi describes. But I think he's right and I also think that if I'd just leave myself alone, I'm heading in that direction and doing just fine." I trust that precious Hank is already channeling his paternal grandmother's wisdom, elegance, integrity, wit, and moxie. Big hugs from Tel Aviv!

That phrase -- "doing just fine" -- put in another idiom "when all our strivings cease" -- seems what all the great philosophies and even the more human phases of religions teach. But it seems our nature not be able to live in it. Love to you, Ronni.

It's Monday, and you are still writing a great Blog, thank you, and have a good week, especially in these times of Covid19, we are really all in the same boat, in some ways, aren't we, not knowing ... "Neurosurgeon Paul Kalanithi came close to saying what I think I am experiencing – or, beginning to experience - in the last entry of the journal he wrote which was published after his 2016 death as When Breath Becomes Air:

”Everyone succumbs to finitude,” he wrote. “I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past.

“The future, instead of the ladder toward goals in life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.” thanks for sharing each day!

Ronni, there seems to be a natural curiosity peeking through your eloquence. You have brought us so far along with you. I wake in the early morning wondering how you are, and hoping you are receiving the best of care.

It seems like my life is made of Planning out then pushing toward Goals which led me to paths to new bigger goals, some I achieved and some I never reached. Then somewhere a long the way I reset the size of the goals but kept working to success. Finally I didn’t have the interest to develop the focus and frenzy of trying to reach someplace I wasn’t sure I wanted to be. At that place it took me a while to stop feeling like there was something important I needed to be doing, instead I found things to do that made me feel good and people to give my time to who needed me. Thank you for sharing

Peace.

As always, you have given me something to think about more. I hope that you continue with your intellectual sharing, your curiosity about living and dying, and the breathing in and out which happens almost automatically. I've just signed up for some COPD rehab...hope to learn some new tricks.

👍

Dear Ronni, your truth shines in your writing and always will. I deeply value all that you say.

And thank you for adding Dr. Kalanithi’s quote, I’m not sure any sage has said it better.

I wish for you to feel the immense love and admiration surrounding you in both good and difficult times, you are our true friend.

I just went back and re-read your two blog entries closest to the first and second anniversary dates of your surgery. In the first, on 6/20/2018 you talked about the surgery itself and the recovery and help you needed and received during that time. You also posted your post-op photo taken by your friend Autumn; what a long way you have come since then! The second anniversary observation, posted 6/24/19, focused on your then-recent diagnosis of COPD and what that meant to your routine . It is interesting, as you say, how the doctors, or whoever calculates these numbers, uses a five year timeline. Having followed your events fairly closely and frequently since your diagnosis and surgery, five years seems like a very long time given the typical progression of a cancer like pancreatic. Telling someone they have a 50 or 75 percent -- or better -- chance of living another two years would seem to be so much more encouraging. Going out five years and giving someone 25 percent seems unnecessarily cruel. No one wants to hear that they are in the 25th percentile of most things. Maybe that's meant to motivate or inspire the receiver of that news to work harder to make it beyond the 75% who don't, but that seems to reflect our American competitive approach to everything. Does it really need to be applied to dying?

A featured story in Parade magazine (which has become The Incredibly Shrinking Sunday Insert) yesterday was "Want to Live to 100? These Centenarians are sharing their secrets to long life." My answer is no, thank you -- no, I really do not want to live to 100. When did that become a milestone of accomplishment anyway? My family has a bit of longevity, with several relatives having lived into their late 80's, but most spent the last couple of those years in facilities in which they did not seem to be enjoying much quality of life.

Being in the here and now is a mighty big task to give ourselves anytime, much less at the stage of life when we're trying to just hang in there and get through the mechanics of each day with medicine, treatments, needed rest, appointments, etc. Interest in meditation continues to grow but it also continues to be an enormous challenge for the average person, and is given up and restarted often -- like stopping smoking -- because it's HARD, especially in these times when we've cluttered up the highways of our minds with so much more than was possible just a few decades ago.

I hope that you will not set for your for yourself tasks and expectations that can be challenging in the least strenuous of times. These are not those times.

Take good care Ronni. You're always in my thoughts.

Another wise and generous sharing. I will be looking up Kalanithi's "When Breath Becomes Air." Another gift from you to all of us. With gratitude, thoughts, and blessings.

I think you are doing better than just fine. You are doing remarkably well in handling life while carrying the weight of two major terminal diseases on your back. Your intellectual capabilities shine and you keep moving forward. I feel a little nuts saying this to someone I’ve never met in person but I love you as I believe so many other readers do.

Ronni, you write so eloquently of things I am beginning to wonder about and make it a lot less worrisome for someone who is going through this with you from one writing to the next. Thank you for your generosity. I wish daily peace & lots of love for you.

I wondered when I might be able to make this comment. A couple of years ago I read a blog where an elderly man (~80 I think) was lamenting that he did not matter anymore.

His wife had died, his children were all doing fine as were the grandkids all in their teens and he just did not matter anymore. Nobody really needed him anymore.

I wondered to myself when I would get there -as I'm looking forward to that time. A time that I'm not really needed, I don't have anybody relying on me, or needs me. Not that they want me to die but that I'm not important in their daily lives anymore. I'll be mourned but life will quickly go on as usual.

Where I'm comfortable that I've made my mark on society - as grand or not so grand - as it might be. I'm now able to leave it all to the next generation to solve or screw up- no longer my fight.

I really want to have a few years in that condition. I'm tired of always being needed.

You are, indeed, doing just fine.

Ronni,

Once again THANK YOU. The last lines in your post today just lifted my heart. And thanks for reminding me of Dr. Kalanithi's book. I read it when it first came out, but I think it is time for a refresher course.

You are often in my thoughts and always with deep affection.

"My mind has a mind of its own." Indeed it does. Thinking of you with hugs and love.

For what it's worth, that perpetual present is what Alcoholics Anonymous has been deeply teaching for 85 years now. It's something I've been working on for 49 years now. And old age has made it easier. Whoopee!

bob's post above resonated with me. i've lived most of my life trying to be useful in one way or another to the many people i've met along the way. i've learned a lot of trades as a result of that. but i'm getting tired now, and in fact there have been a number of years now that i question whether that usefulness to others has much intrinsic value. i've managed to satisfy a lot of people, at least temporarily, but i've seldom been able to satisfy myself. looking back it often seems the times i was most content in myself were the times i was off alone in the wilderness, not subject to the demands or requests of people i was trying to satisfy for FSM knows what reason.

i've been talking to myself for years now about living out the remainder doing what i want, or doing i don't even know what. just following my nose, and my natural curiosity. but here i sit, still trying to be useful to people, most of whom i feel no emotional connection toward. what a foolish existence, i frequently tell myself. like bob, i'm tired of feeling needed, and equally tired of feeling that i need to be needed.

apologies for making this comment about myself, but aren't we all connected?

I'm chasing the wind with Pet SCANS and CT SCANS. I have to remember that phrase.

seamus...

No apologies please. You've expressed the ideas well and I suspect that in addition to Bob, there re plenty of people questioning the same kind of things.

Oh Ronni, you are going to be so very missed by so very many. I just wanted to tell you what a gift you and TGB have been to all of us.

I bring my own curiosity to life's mysteries as you do. As I listen to your journey, I feel awe and reverence swell within me. I am in the presence of something very sacred. And my heart is grateful.

Ronni. Your blog post today was one of your best as evidenced by the excellent comments that followed. My husband and I are 91 and 90 and long to be needed again. We are fortunate to still have each other but after 3 months in an elder living facility quarantine we are lonely for our adult children and grandchildren. We need THEM.

You are indeed doing just fine dear Ronni. Your post has given me much to contemplate. I have COPD too, along with other health issues (not cancer, yet). Even before the COVID-19 pandemic arrived, I had given up driving and rarely left the house, having all I needed delivered. But at least I had family and friends visiting me. Now all that has stopped and I’m isolated and alone. I’m absolutely terrified of catching COVID, which I am convinced is a death sentence for me. But I feel safe in my home. Safe, but with a growing sense of living in a kind of limbo. Time has no meaning. It’s not as if I am stressed out or unhappy, I’ve just let go of any sense of or need for keeping to a routine. I read, watch some TV, keep in contact with friends and family via video chats and social media, and participate in the Resistance on Twitter (over 9,000 followers). I do not care one bit if I sleep all day and stay up all night, or vice versa—it makes absolutely no difference to me. I think I have almost perfected living in the present and letting go of worries or stressors of accomplishing this or that project goal. The most important thing is taking care of myself, physically and emotionally; and allow myself to have the sense of serenity it gives me to know that I don’t “need” to do this or that to fulfill some phantom “goal” that really doesn’t matter (if it ever did). My job is to enjoy my day with a feeling of calm serenity and relaxation. My job is to stop harshly judging myself for not accomplishing this or that. If my only accomplishment for the day is taking the trash out (which leaves me totally breathless), then I mentally pat myself on the back and say “good job you!”

I a sorry for going on and on about this, this positive feeling I’m starting to harvest successfully that it’s okay, it’s fine, to relax and live and enjoy living in the present.

Ronni I hope your days are filled with a sense of calm and serenity, and the knowledge that your readers appreciate your continued generosity and wisdom as you travel a road we shall all travel. We are thinking about you and love you so much.

Thank you for such a wonderful post today!
Sending love, and holding you in the light as the Quakers say,

Page
Santa Rosa
California

Wonderful post and comments. Bob and Semus...well said and will likely help “free” a lot of people.

Ronni, long may you blog. You are giving more than you know. Your honesty and insight expands us all.

Yes, as others have written, thank you SO much for sharing. And for sharing so clearly, so straightforwardly and so well. Your final reflection gave me a lot to reflect on and reassured me about something I had started to wonder/worry/think about as I read, i.e. whether you were feeling a sense of "responsibility" towards death. As if having time to prepare for it made you feel that it was your "job" to spend your "time in the best possible way" and that death required "a proportional response". I would imagine that feeling responsible (towards yourself, towards your duties - whether self-imposed or not, towards your readers) is just part of your nature and that it is magnified by your intelligence. But it DOES help to "leave oneself alone" (because our minds' minds are truly more their own than ours), as all the good advice about "heightened awareness" tells us. It's just really, really hard at times. Most of the time.
So my hope today is that you can really leave yourself alone as much as possible.
With love, admiration and gratitude,

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