ELDER MUSIC: Strange Days
A TGB READER STORY: A Bad Day – May 2020

Ruminating on Pancreatic Cancer and Me

It's everywhere recently, this pancreatic cancer stuff. Or so it seems to me.

Yesterday, there was a celebration for the late U.S. Representative John Lewis of Georgia who died of that disease just over a week ago. There will be more ceremonies and remembrances during the next few days.

Last Tuesday, Jeopardy! host, Alex Trebek's memoir, The Answer Is – Reflections on My Life, was published just a bit more than a year after he announced his diagnosis of pancreatic cancer. To promote the book, he has been giving interviews that, of course, include a discussion of his disease.

Maybe these things are more noteworthy to me than they might otherwise be because, as many of you know, I have pancreatic cancer too. I've been living with it for more than three years which, according to my oncologist, makes me an “anomaly” - hardly anyone lives this long.

A lot has happened in my past three years – the extensive Whipple surgery and recovery, which took four or five months; two non-invasive surgeries to repair an internal bleed; three rounds of chemotherapy; an additional diagnosis of COPD; and now hospice.

If I had known in the beginning that I would still be here three years hence, I would have thought of it as a long time. But all those years flew by and the big events – such as the day they told me I had pancreatic cancer – are as clear in my mind's eye as if they had happened a day or two ago.

Time is such a squishy thing. It is equally true that an hour can feel like an entire day and a year can feel like a week. Nowadays, since they told me I have fewer than six months to live, I prefer the former – that a few minutes stretch out into many hours. Unfortunately, that is not the usual case.

There is pain these days, too, and before the medications kick in, I am in a deep, dark, dreadful mood and an hour of it easily feels like a day. When I'm stuck in the pain, my mind goes to imagining my death, picturing what it will be like.

Because when I feel the time is right I will be using Oregon's Death With Dignity Act to end my life, I probably have a better handle on how it will happen than people who wait for death to find them. It's still not a pleasant place to spend one's time.

On the other hand, I have always believed in confronting my demons head on and there can't be any greater one than death.

Nevertheless, these speculative detours into what will be my final moments of consciousness, always accompanied by pain, leave me angry, depressed, lonely, panicky and generally shattered.

But wait. When the pain pills finally go to work, it is as though none of what I just described happened even while, like now, I am writing or thinking about it.

Instead, I become attached again, as strongly as crazy glue, to the world we live in. Even in humankind's once-in-lifetime predicament – pandemic, economic disaster, climate change, increasingly dangerous demonstrations, Trump's wicked and corrupt presidency – the last thing I want to do is leave.

We're not even halfway through this movie yet and the universe is telling me it's time to go??? How dare it. And yet, here I am.

For the moment, I just hope my remaining time is not as messy as whatever it is I am trying to say with this post.

Comments

Listening . . . with love,
Faith

you remind me, life is a bumpy ride..

Ronnie
Thank you so much for sharing your thoughts. Its so nice to know someone who shares her life with me.

I don't know anyone who is open and honest about getting older and facing one's mortality.
You are a great blessing to us all.

Once again thank you so much for all you do for your readers.

Peggy

I a sorry you are in so much pain. I am glad the pills make it bearable. I do hope for you to be at peace, in whatever way that works for you. May you find peace.

As always, you say it. And you say it like it is. And you make it very clear and very helpful for all of us. As Peggy commented, "once again, thank you so much for all you do".

I am so glad you were able to get out of bed this morning, put your feel on the floor, hopefully make your coffee [better yet if someone made it for you!], got to your computer and write to us!

Thanks and thanks again. Hope to read you tomorrow and firmly believe I will - I think you have a while to go Ronnie - I guess it is either live with the pain or ask for enough meds to put you out. I am glad you are choosing to talk to us for as long as possible.
love,
Betty

Stunningly honest. I get it, and your writing helps me deal with my own issues. It's just good to know someone else "goes there". Your writing and honesty is a gift. Thank you.

You're an amazing woman and I'm glad I know you through your amazing blog.

I wish I were closer to give you a hug

It's not messy. It's human and honest. May the meds keep you going long enough to see Trump's defeat. Love and prayers.
Estelle D

I love your direct approach to the pain and emotional turmoil. I hope the pain can be managed, and I send you virtual hugs.

Messy or otherwise, we hear you and appreciate your words and thoughts. I'll bet all of us here wish we could ease your pain and keep you attached to this crazy world.

You say it eloquently—not messy at all. Honest, brave and beautifully written. Wishing you many more good days.

What I hear, dear Ronni is this: Life. Death. Yes. Even so...

Wishing you the best. My love to you, Ronni.

If you can tolerate a faster-acting and more effective analgesic, would you be willing to try it, Ronni? (Hey hospice, can you help here?) Sometimes they have to tinker with the mix to get it right, but now is the time for quality pain management.

I think of you every day and send you sincere affection and deep appreciation.

Ronnie, you are indeed a hero and also an amazing role model. At some point or other, each of us will follow you; on our individual path, but to the same destination, and you are showing us how to do it with honesty and courage. Thank you for this.

Reading your blog about our time here on earth has resonated with me. Your thoughts have been my thoughts. We are all in this together. Thank you.

You are really amazing. Appreciate your insight, while I don't have your pain I do know how pain can affect a person.

What a wild ride you are on..........from the darkness and pain to love of the world, sounds like with regularity and frequency. I too wondered, is there a way to smooth this out. Not so much pain. I have a definite feeling that if that were possible you and your Hospice nurse would have it nailed. I am sorry for the pain and darkness. I hope when your time comes it's beautiful and thrilling.........which I believe is at least 50% possible. Remember Steve Jobs??? As he was dying, he kept saying, "Wow! Oh Wow!"

I owe you a huge debt of gratitude for sharing this part of your journey with us with such candor.
When I ponder the transition from this life I think that everything that senses pain and discomfort is of the body that we won't be taking with us, but there's still a sense of "better the devil you know than the devil you don't." Still, why would there be pain then?
The last thing I want to do is to hurry you off - I, for one, am going to miss you - but I think it would be hard for me to accept prolonged suffering for simple fear of the unknown. That's easy for me to say.
Keeping good thoughts for you.

Feeling the same here as the above commenters, Ronni, and wishing you more consistent pain relief. Also, I wish for you the time to make it through a convincing defeat of our current "Republican" administration in DC; especially, that the 270 electoral votes are in before the elections are finalized in the muddled states. You deserve to be here to see that and revel in that defeat.

Hang in as long as is best for you. We will understand and hold you in loving thoughts always with or without your blog fresh before us.

You’re not alone in always seeing references to your cancer Ronni, it seems like the past year or so I’m reminded of you almost daily. (Just last night, I was in bed watching youtube videos on my tablet and happened on one from 1991 with Johnny Carson & Michael Landon, a month before Michaels passing.) So you were in my last thoughts before I went to sleep. I suspect you’ll be there again.

Pain is the worst. It obscures everything else and screams for attention. Wishing you less pain and more feeling well days. As others have said, your blog is a gift to all of us.

On shitty days when PVD inhibits my getting out of bed and my mind goes to darkness I wonder why I'm still here. And then the pain slowly ungrips and I walk again and I think "not so bad", well here I am, I am alive. And I list out a few becauses, and tho darkness leaves.

I hear you and feel you though know in my heart that you are going through terminal thinking frequently.

Thanks for the honesty as always.

We are all walking each other home.

XO
WWW

We are all watching the movie, and we are in it too!

I am happy to have you sitting next to me sharing the dramatic parts, the good stuff as well as the scary moments that make me cover my eyes.

What a spectacular cinema this life is.

Thank you for taking the time to write.

Wow! Ronni, Wow! You're the best!

"We are all walking each other home." How wonderfully expressed, Wisewebwoman. Thank you. And as always, thank you, Ronni.

We didn't need a doctor to tell us you are an anomaly. We've known all along that you're one of a kind.

Ronni, in addition to the many beautiful comments that honor your life and your work, I want to add that I relate to you as a writer. When I write, I am in a world of my own, but the greatest satisfaction is to share.

Sometimes when I finish a piece, I look at it and say, “did I really do that, it was a blank screen (page) only hours before.” Regardless of the subject, whether dark, reflective, light-hearted, or informative, your takes on life are insightfully and most gorgeously expressed.

It’s always a great day when you show up in my email, like today.

May the sands of time get stuck in the neck of the hourglass for now . . . .

You're still here for us. Selfish on our part, but we need you. That "longer" life you have
had is to uplift your audience. God speed, Ronni. B

What an amazing blog. Thank you for sharing your precious minutes, days, weeks with us. It is good for all our souls.

Dearest Ronni, Once again I reach for words to express all I feel reading this blog - the honesty, , humanity, wisdom of your words are a gift. And then the responses, each one holding a beating heart. In a world where empathy is in such short supply, the community you have created is (as your oncologist says of your survival) an anomaly. Cheers to anomaly and the warmest of hugs to you.

Hi Ronnie
I want you to know that I have loved your blog. Your intellect, candor, and chutzpah are a delight. The breadth of your interests always astonishes me.
Your post of June 5th especially resonated with me. I left paid employment in February and am navigating this next phase, finding a meaningful next chapter. I gathered my blog posts together and began a book, which has evolved in a direction I did not anticipate, but am pleased to be in: painting a positive picture of aging. Know that you are leaving a legacy, bot just in folks you've impacted but also in writers who will continue your message. I hope to be one of them. You've set a high bar to follow.
Regards
Margit

Ronni,
Your gutsy, humorous comments on where and how you are and where you're going and when . . . has prompted a rare response in me this morning. If only we could all tell the truth as you do. Thank you, Carol

Ronni, please tell your Hospice nurse about your pain. I am a retired Hospice doctor, and your pain is not controlled. It was my job to adjust the medications, their doses, and timing so the patient was pain controlled and able to live as full a life as possible in her situation. It sounds to me like you wait too long to take the next dose - it should take effect just before the last dose loses effect. This is common, and unnecessary.

I'm no big fan of pain (which I experience daily, although of lesser intensity and not due to cancer). For Ronni, I would totally agree with Nan Jolly. Otherwise, I'm late to the comment party, as usual, and all I would say has already been said eloquently by others.

Thanks. What beautiful writing to be sorry for.

Dear Ronni
I don't find this message "messy" at all. It is gut wrenching, frightening, and more real than I can almost stand. I know my remaining time is limited, though I don't have specifics. Now that New Jersey allows me to determine my ending, I will be doing that.
Every thing you write, each moment you share, gives me the strength to do what is necessary to prepare for my end. My only worry is what will happen to my beloved cat. Everything else, I can leave behind. Of course, I say that now - when I have more time. I used to be reluctant to think about dying. But now, when the world I loved seems to have gone mad, it's not as hard. Thank you for the "mess". It is a gift I can not imagine anyone else giving.

and it's only Monday, tomorrow you have a day off, hope you feel better, and that we are more than half way through this mess in politics and Covid19. Take care, and Breathe. m

Life is mess. And your eloquence on that mess is a beacon.
xxx

Dear Ronni, please stick around til November 3. We need you as part of the celebration when DJT gets his just deserts. You are our guide and inspiration.
Janet aka Chancy

I just found you. And I will walk with you.

"We're not even halfway through this movie yet and the universe is telling me it's time to go???"

The physicists tell us that nothing is ever destroyed, only changed. I often think about what gives me my consciousness. Where does that go when I die?

Thich Nhat Hanh has said that the moment of enlightenment occurs when the wave realizes it is the ocean.

Think big.

Oh, and here's another idea that interests me: the Buddhists, inter alia, tell us that linear time is an illusion. I like thinking of it as a disco ball with an infinite number of facets. Everything exists simultaneously--we're just stuck (for whatever reason) on one facet at a time, and can't get enough perspective to see the whole thing . . .

Think big. Mdanwhile, have a hug.

Well.
I think it's quite obvious that you're not allowed to go anywhere until at least after the election. The crowd has made it's feelings known.
If Big T. loses, you get to go with a celebratory hurrah and if he wins (gods forbid) it'll be a relief to get the hell outta here. Heck, some of us might go with you ;)
Ramp up the pain control and know the gang prays for your comfort.
xox

It wasn't messy at all. Thanks for writing.

Believe me,what you said(all of it) made complete Sense.Thank you

I read all these comments and see so much love and affection for you Ronni. All these people truly care about you.

There may be no good words to respond to the profundity of your comments on dying mindfully, and nothing we can really do or say, except to tell you while you're still with us how meaningful your blog is to us and how we truly want these final months to be peaceful and pain free for you. Myself included.

You’re a very intelligent lady! You know what you need and what advice to follow. Love!

I add my thanks for your brave honesty. And it's always amazing to me how much we love life and hold on to it as long as possible, even through the pain and suffering. And perhaps, if you leave this life before the election, you could do something in the after-life to make sure the right side wins..)

You are beautiful.....................and I am sorry for the pain. I wish you comfort and Peace. And I am glad you are in Oregon to have options. Your posts have meant a lot to so many...........and are and will help all of us as we come to the point of facing our own inevitable deaths. Thank you........................Peace............and Love to you................

Incredibly timely, as I sit here waiting for pain pills to kick in after getting up-takes about 1 hour...

I thank you so much for the strength you have to continue writing. You are one of my goal posts nd a star in the darkening firmament that surrounds me.

I get surprising strength from knowing that I have the means to finish life when I feel the time has come. Choice is a real booster and gives me the will to go on.

The sun is shining now, pain is receding, I am a human being once more, reading all these nice people who join you in words makes me thankful once more, to them and especially to you.

You are a blessing in our lives. Thank you!

Ronni, I am so sorry that you have pain, and such a dark state of mind that comes with it (though, in your scrupulously honest and curious way, you manage to make the coupling of the two a morbidly fascinating observation).

My father used to joke, not without insight, "Teenagers are so obnoxious to help you let go of them." I hate to think that life itself might be the same way.

Minimizing pain is one of hospice's main jobs. Is it possible that your medication schedule could be adjusted to anticipate and forestall the pain? I know you want to be as clear-minded as you can and morphine, hospice's panacea, is not exactly famous for that. Is there a middle way? Do you feel those dark spells serve a purpose, are even necessary? Certainly they are an unforeseen, unimaginable-till-it-happens part of the process you are so unflinchingly documenting. But is there a little more choice available about how to live, as well as how to die?

Much love to you.

All of the comments above, deep deep, concern for you and much admiration and love ~

My cousin wanted to live long enough to see the end of Downton Abbey, but didn’t make it. I want you to be there for election night!

Dear Ronni,
I tune into the blog to learn about life - yours, mine and all the others in the audience.

Your honesty on being terminal feels like a gift to the living. What a grand privilege it is to have your words as memories.

May we all have a place to speak, eat ice cream, listen to great music, look at the sky and celebrate one minute in the day.

Thank you for being you. I am grateful for your presence.
Jane Seskin

Dear Ronni,
It was my lucky day years ago when Ann Burack Weiss turned me on to your blog.
Yours is the only one I follow. It's a complete tutorial in living while dying .
It is a privilege to be among the community of responsive readers you have attracted through your honesty, and generosity.
Thank you Ronni. It's incredible to know you and to have been permitted to travel
along this journey with you.
Lynn Lawrence

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been posted. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)