134 posts categorized "Cancer"

And Now, Hospice

As I mentioned a few blog posts ago, you know your time on Earth is winding down when the doctor says you are now eligible for hospice care. He or she makes that determination when your disease is no longer responding to medical attempts to cure it or slow its progress.

(Palliative care includes much of the same comfort care as hospice but also includes continued curative care.)

As of last Friday, I am officially in hospice which consists of an amazingly wide range of care. I will get to that but first, let's cover the most basic nuts-and-bolts questions:

  1. The goal of hospice is to support the highest quality of life possible for whatever time remains.

  2. Hospice care is most commonly provided at the patient's home but is also available at hospitals, nursing homes, assisted living centers and dedicated hospice facilities.

  3. In the United States, people covered by Medicare can receive hospice care if the physician thinks the patient has less than six months to live. Sometimes old people fool the doctors and live longer. Hospice can usually be re-certified for another six months. And another and...

  4. Hospice is generally paid for via Medicare, Medicaid, the U.S. Department of Veterans Affairs and private insurance. Hospice programs differ, but many offer care based on need rather than ability to pay.

I had expected to go to the hospice offices for the introduction to their services, but no. The nurse came to me as will all hospice providers. For the past couple of months I tire more quickly and easily than before so this was a welcome surprise.

We spent the first couple of hours going through the explanatory binder that is my guide to the service and my care. I have a team now. A large team. A registered nurse who is also my case manager; a physician; an aide who is also a certified nursing assistant, can help with light housekeeping, help with laundry and such other tasks as become necessary, and regularly check my vitals and other indicators.

There are also a medical social worker to help with a wide range of personal and practical issues; a non-affiliated spiritual care counselor; volunteers who can provide companionship and various sorts of non-medical help.

There are more but those give you an idea of how comprehensive this hospice is. The nurse made it clear that all of their services are tailored to my specific needs and desires.

But wait. There is even more I would not have thought of. The hospice now takes care of most of my medications, delivered to my door. In my case, half are paid for by hospice now – they buy in bulk with attendant discounts, the nurse explained.

Others are paid for by my Medicare Part D coverage or by me but almost all are delivered on a regular schedule by hospice.

They also supply all needed medical equipment. Recall that it was Friday I met with the nurse for the first time. On Saturday, my new oxygen concentrator was delivered, hospice arranged for the previous one to be picked up next week by that provider, and the delivery person moved the old concentrator and big emergency tanks to a space near the front door so that I wouldn't need to tackle that. (They're heavy.)

I did nothing but stand around and open the door for the delivery man.

This taking over of the arrangements for drugs, oxygen pickup and delivery, and whatever else becomes necessary in the future is a relief to me. In the past two or three months or so, it has become more difficult for me to organize all the little things as their numbers increase. I manage to get them done but it takes a lot of effort, not to mention the annoyances when things go wrong which tire me.

By the way, my new difficulty in organization affects this blog too. You may have noticed that recently there are fewer items in Saturday's Interesting Stuff. That's because over all these years of doing it, I have probably viewed or read at least a dozen videos or stories for each item I publish.

But I'm slower now, I wear out more easily and have trouble keeping track of them – mostly due to a late-age distraction problem. Hence, fewer items on Saturdays.

Getting back to hospice, that binder the nurse left with me has sections on end-of-life legal documents, lists of best-practices in self-care, charts to track medications, home safety tips, a terrific daily journal where I can note emotional well-being, pain level, body responses, etc.

It's not that I need all these things necessarily or yet but they are there when I want to check something, they are smart and they are valuable.

I'm writing most of this on Saturday afternoon. That oxygen delivery man arrived on time, was friendly, made sure I know how to use the equipment and we had a nice time chatting too.

Later in the day, a different nurse from Friday telephoned to see how I am, whether I needed anything and to give me the name of my nurse/case manager who will visit today, Monday.

In the evening on Saturday, the emergency drug kit was delivered. This is kept in the refrigerator so it is immediately available if I have telephoned with an emergency and can help until the appropriate caregiver arrives.

What all of these people did – the nurse who enrolled me on Friday, the oxygen delivery man, the nurse who telephoned with some information I needed, the drug kit delivery person - was repeatedly remind me that if I need anything, from a serious medical problem to just any old question, to call them.

They are available 24/7 and there is always a real, live person, a registered nurse, to answer the phone.

As much as I appreciate every bit of this, it isn't easy for a woman who has always done everything for herself by herself. Unless I am bleeding profusely, I have always thought of it as an imposition on the other person to ask for help. Just recently, an old friend in New York City gave me a kindly lecture on the fact that she and I share that trait and now I need to let it go.

In just these three days, I already feel a relief knowing there are people who can help me with so much and I seem to be going along with them although I'm not completely comfortable yet.

But I'm getting there. Geez, I guess if you live long enough you learn all sorts of new things.

I don't know if this is an exceptional hospice or if all hospice care is as comprehensive and professional and comforting as this one but, as with the doctors and nurses who cared for me during the past three years, I seem to have landed in the best possible place for these last few miles of my journey.

What I do know for sure is that I have never heard about hospice from people who were familiar with it - family members, caregivers and a couple of patients - in anything but superlative terms.

If you have experience with hospice, do let us know about it in the comments below.


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.


What It's Like to be Dying: Take Two

Seven months ago, almost to the day, I wrote a blog post titled, What It's Like to Be Dying:

”You could say at this point that death and I are dating,” I wrote then. “I think we've made it to the holding hands stage. We're open to each other.”

That feels true to me for that moment in time. It's different now. What has changed is that doctors have advised me that I have fewer than six months left and since March, I have been living with body pains that while not of the screeching variety, require over-the-counter medication to get me through the day.

I know, we old people who are dying of this or that are supposed to be stoic about it and in general, people would be happier if we didn't remind them of what we are going through, what the outcome will be.

Well, bugger that.

I have always used writing to figure out what I think or believe and at this stage, there is a diminishing number of productive hours in a day. So here we are – an exercise in working out my thoughts and a blog post, all in one.

If you don't already know this, let me be the first to tell you: dying people – either me or any of those whose words about their dying I have read – have no grand insights to pass on to the rest of us. It's not like dying people can peek over the edge of the abyss and describe what's there.

When I can think dispassionately about dying, I understand that it is a law of nature. No one, no living thing escapes.

For many years, I have watched spring lilacs begin to wilt so beautifully it could break your heart, then droop and die – just as beautifully. Tulips and daffodils too, in their time. At the end of his life, my cat Ollie withdrew to a cupboard in the dining room hutch. He chose it on his own; all I did was supply a soft, warm blanket for him to lie on.

Sometime soon now it will be my turn. I'm guessing at this point that I am in the wilting stage. Dying is my daily companion.

It is almost subconscious that I keep an eye on myself, alert to new physical symptoms but more importantly, checking for new thoughts and feelings, wondering if perhaps as time grows shorter that I will find acceptance and (dare I hope?) even joy in letting go.

Two or three times a week, I am caught unaware, suddenly so terribly sad at the prospect of leaving. Life here has been good. Sure, there were difficult times although I see recently how I overplayed some of them to myself. But we do the best we can at the time.

Some days now I'm angry, shaking a metaphorical fist at the universe. I'm fortunate that I've never been a “why me” kind of person but I have a lot of “why now” inside me. Just as the world faces several simultaneous catastrophes like nothing else in my lifetime, I'm expected to go? Now? Really?

Adding them up, there are the physical difficulties, profound sadness, anger – and add in powerlessness.

I have no weapons against the inevitable except my own fortitude (unreliable, these days) and Oregon's Death With Dignity Law. I have always been in favor of it but only in theory. Now it's real and I will soon write a blog post about that.

But for the time being, daily life goes on and the larger amount of it is good – comfortable, interesting, even joyful. Just not every day.

I like living even with the restrictions of my age and health, and our stay-at-home life due to COVID-19. You could say that at this point death and I have had our first few kisses and are moving forward even if it is in fits and starts.


Daily Life When Time is Short

The carpeting in this apartment had needed replacing for awhile. I had been working up to getting it done when I was diagnosed with pancreatic cancer in 2017. Because I did not expect to live more than a year, I couldn't see any good reason to spend a moment of that time or money on carpeting.

Three years later now, they say I'm eligible for hospice (a euphemism for you have fewer than six months left) and however shabby it looks, I really do not care a whit about new carpeting.

Priorities change pretty quickly when the doctors say you don't have long to live.

Some people in my predicament make bucket lists. Two people have even asked me (in jest, I hope, but I can't be sure) if I've started working on mine. Certainly not. And I have always disliked the idea so much I might never forgive screenwriter Justin Zackham for giving us that ubiquitous phrase.

Instead and without putting much thought to it, I simplify daily life. Or, perhaps what I mean is that I have followed new inclinations as they have appeared and continue them if they serve me well enough.

A week or so ago, I was enjoying how comfortable sweat pants are and wondered why I have only one pair. I could use a couple more in different colors, I thought. Then I remembered: Oh, right. I won't be here a whole lot longer so what's the point.

Except when I change the linen, I don't make the bed anymore. You would be surprised how exhausting that is with severe COPD so I skip it now. I don't like seeing an unmade bed when I walk into the room but it's an easy tradeoff to losing my breath and heaving for air.

During my first two or three television jobs on local morning shows in New York City in the 1970s, I was usually the politics and cooking producer. I got to work with such luminaries of the era's culinary world as Julia Child when she was a guest, Craig Claiborne, James Beard once, Burt Wolf and others. I learned a lot from them and enjoyed cooking ever after.

Until now. Not long ago, my interest just dropped away.

It pains me to admit this but after a lot of trial and error and thrown-out food, I rely on the only two frozen meals from the supermarket that I consider edible. They are necessary some evenings when I'm too tired for the effort involved to cook even the simplest dinner.

At this point, I don't worry about healthy food or balanced meals. I'm concerned about the number of calories to keep up my weight and I don't care where they come from. Ice cream plays large part now that the weather is warming up.

Occasionally I use food delivery but it's a habit I never developed BC (before Cancer, COPD, Coronavirus – take your pick) and have not been able to work up an interest now.

As I've discussed here before, until my inclinations lean otherwise, I will continue to write this blog and even though I appear to be slower at it than in the past, it doesn't fill even my much shortened days.

It's not that there is a scarcity of things to do. There is a lot of information to pull together so my affairs are not in too much disarray when I die. I'm not eager for that work, but it needs to be done.

There are books to read, a dozen or more as yet unopened ones, plus the old favorites I would like to at least dip into again if not entirely re-read. But I haven't worked out how to choose. I dither - while time slips away.

There are also the shelves and shelves and shelves of philosophers and other kinds of thinkers, a lifetime's effort to find answers for the big questions. Maybe there are ideas there that would mean something different at age 79 and on the verge of dying than in the prime of life at 20 or 30 or 40. How to choose? Don't look to me for an answer.

A larger number of TGB readers than I would have guessed have asked about making this blog into a book. Just this week, Millie Garfield's son, Steve, emailed with information on how to easily do that online. It's a good idea that I appreciate but I doubt I will find the energy. The smallest things, these days, take more effort than I can muster.

Here are just a few things that make me grateful to be this old and unwell in the 21st century and not the 19th:

Washers and dryers
Stoves and refrigerators
Indoor running hot and cold water
Indoor toilets
Central heating and air conditioning

Think of how hard everyday life would be without them. I never appreciated until now how exhausting getting through each day must have been throughout history until a hundred or so years ago. No wonder people generally died younger than we do.

There must be others of you reading this who are going through similar changes.


TGB Readers and My Youthful Dream

The topics of blog posts here have always followed from my own current interests about ageing. Sometimes a checklist on how to avoid falling, for example, a complaint about misguided politicians threatening Medicare and Social Security or, starting three years ago, what it's like to live with a terminal disease.

Now, I've read your many wonderful responses to Wednesday's post about living with the new-ish knowledge that the end of my earthly journey approaches.

Your kindness about this journal overwhelms me. Modesty leads me to dismiss you who comment here as giving me way too much credit. But. But. There is something else now: you, your attention and your responses have fulfilled a lifelong dream.

Let me explain.

While reading your comments on Wednesday's post (along with others in the near past), I recalled a time back in my teen years when I was hanging out alone in my bedroom one day. Probably I was 15 or 16 years old, getting toward the end of high school, and I was thinking about what I wanted to do with my life.

Doctor, lawyer, Indian chief? Actually, in the mid-1950s, there was not much for a girl to aspire to be except nurse, teacher, office worker and, of course, mother. None excited me. The only thing I actually wanted was to do something that made a positive difference in the world.

But what? I had no idea how I could do that. I continued thinking about it, looking for inspiration that never materialized. And when the thought occasionally popped up during adulthood, I still didn't know. Charitable giving isn't what I ever had in mind about this goal.

After graduation, there was a single imperative, to support myself. One thing led to another and after a few years of going-nowhere office jobs, I ended up with a long and varied media career – radio, television, internet. It was always an interesting way to pay the bills but I never confused it with making a difference in the world.

When paid employment came to an end in 2004, I had already begun this blog to record what I was learning from my spare-time, personal research into old age.

Back then, nearly everything written about it was negative. Getting old was mostly made out to be a fate worse than death and one was urged to do everything possible to avoid it or spend a fortune trying to look younger than we were.

For a long time, I was pretty much alone in the blogosphere – or anywhere else - trying to explain how foolish and life-defeating it is to spend up to a third of one's life disliking, even hating the number of one's years.

(That's no longer so. There are encouraging signs of individuals and people who are now called influencers taking a more positive view of age. Which is not to say that there isn't still too much television and internet advertising about how to look young forever. But it is changing. Slowly.)

Reading your comments Wednesday and again on Thursday, I had a revelation. I realized that I need to drop the phony modesty I have harbored through these 16 years and accept that the many people saying similar things about what they take away from this blog must be true.

Listen to just a few of them:

“You’ve inspired me to live fully, absorb losses, treasure surprises, and fume with passion.” (Paula)

“You inspire us to carry on with dignity no matter what misfortune may befall us.” (Ruth Marchese)

“[Y]ou helped me find an approach to aging.” (Mary Jamison)

“YOU are definitely having an impact and a very positive one!” (Rebecca Ann Magalhaes)

“This has helped me in giving workshops and also in living my own truth...” (wisewebwoman)

“Each of us carries something we learned from you, and we will keep sharing that with others.” (Wendl Kornfeld)

“A small plea. I hope your words of wisdom, as also peoples' comments, remain available for solace.” (Mary S)

Yesterday, I decided to believe you all (why would you bother to write such things if you did not believe them?) and in that moment, realized that here in old age, I have finally fulfilled my teenage dream.

I am awed and pleased that you find inspiration in my writings. I don't plan it that way, you know. Before cancer and COPD, I was exploring old age and passing on what I learned.

These past three years (Three years? It has gone by in a flash.), I have written about facing a terminal illness to find out what I think and how I feel in this predicament. In the process I find now that it has been important to you.

(Oh my god, is this my Sally Field moment? Oh well.)

I am thrilled. And weepy. Without you, I would never have understood that you, all of you, made my youthful dream come true. What an extraordinary gift. I am humbled and thank you with all my heart.

* * *

Now a couple of related housekeeping items.

In answer to Mary S's “plea” above. A few months after I was diagnosed, I asked the people at Typepad, the internet company that hosts this blog, what it would cost to purchase five years of hosting so it will be here for at least that long after I die.

They responded immediately, making my account free. They have always been an excellent host, hardly any down time in more than 16 years and excellent customer support via email – usually within an hour or two.

Also. On Wednesday several commenters sounded a bit like they expected TGB to end soon, something I interpreted to be within weeks or a couple of months.

Of course, I have no idea how long I will be here and I do not know how the course of the disease will affect me either physically or emotionally. But for the foreseeable future, I will publish here as usual.

That might seem odd to some – to keep scribbling away while facing the great unknown. But for 16 years, TimeGoesBy has given form and focus to my days. That is still true. So I will keep writing it for as long I can. It's what I do.


Winding Down a Life (or Not) in a Troubled Time

During the president's repugnant Bible photo op Monday evening, it struck me that I will not see the outcome of the extraordinary time we are living in.

They tell me I haven't long to live - “they” being the doctors. But even without the CT scan a couple of months ago, I knew that.

Not counting the pain during recovery from my Whipple surgery in 2017, which was significant, I had no pain until early March this year. Now it is an infrequent good day when random body pains don't intrude.

Mostly, it is the low-level kind of constant pain that grinds down one's energy and mind accompanied, in my case, by the darkest kind of thoughts. To counteract, I use over-the-counter pain killers liberally. They work (if you don't count the two hours it takes for them to kick in), and as to dosage warnings – oh, please. What does it matter now?

Also, my appetite is diminishing. I force myself to eat as much as possible to prevent frailty and it's not easy overcoming the urge to puke halfway through a meal.

Right now, I'm down two pounds from this time last month. (Do you know how hard I had to work at dieting most of my life to lose two pounds?)

Cancer and COPD together are robbing me of energy. I tire so easily that I sometimes need to nap in the afternoon, a time when I am done for the day doing anything that involves effort from body and mind.

Even reading is difficult later in the day. I understand each word but my focus is so weak I lose the thread of paragraphs and even sentences before I get to the end.

Due to my doubly damaged lungs – COPD and cancer – I'm fairly well freaked about COVID-19 so I'm overly careful about distancing, masks and disinfecting anything I bring into the house. Would that other supermarket shoppers cared as much.

It all sounds grim, doesn't it. But it's not. Discounting bleak thoughts when I haven't taken pain pills soon enough, I'm not unhappy and nowhere near miserable.

I'm adapting, as the diseases make necessary, to different living arrangements and I think that generally, most of us are like that. We make do quite well much of the time when circumstances require it.

You may recall that when I was first told I had pancreatic cancer three years ago, I immediately gave up my daily workout, having hated it for many years. Well, I'm back at it.

Those amazing nurses at pulmonary rehab showed me how exercise helps me breathe and I certainly know they're right because now, whenever I skip a day, I pay for it heaving for air if I move faster than a sickly old woman ought.

Last week, I was reminded of some sage advice from Darlene Costner when I quoted her in her birthday blog post about cutting back on housekeeping:

“I no longer care if my house is spotless,” she wrote...”I am aware that I am unable to do the hard work necessary. I shove it onto my list of things that I won’t worry about. Now I am more like Phyllis Diller who joked, 'I clean my house twice a year whether it needs it or not.'”

Me too, now.

The virus has made huge changes in all our lives. And now, following the death of a black man at the hands of white police, there is widespread civil unrest exacerbated by a ignorant, little boy president and his sycophantic, West Wing enablers.

Something big is happening in the United States. We already knew there would be no going back whenever the virus is contained. Now, whatever that new way of being, of living will be complicated by this eruption of often violent clashes and the divisions they are causing.

During the late 1960s and early 1970s, I took part in the civil rights and anti-Vietnam War protests and marches. My health doesn't allow participation this time, but I sure do want to see the eventual outcome, and what follows from that.

This time I won't and I am sorry about that. None of the fear, anger and disruption we are seeing now can be resolved in a few months or even years.

When I cared for my mother during her last several months and talked to my great Aunt Edith every week during the last two years of her life, I watched both of them, little-by-little, lose interest in and let go of the world and its events.

Ever since then, I have hoped their gradual withdrawal is a normal development as death approaches because I don't want to die feeling like I missed the last reel of the film.

As much as I yearn for this disinterest as my days dwindle down, for now I am still very much of this world, following events as closely as any previous time in my life. Curious, curious, curious and full of the can't waits to see how it turns out.

So, I choose to keep going for as long and as fully as I can or want in the time that remains. I choose to rise in the morning, be present each day, be kind to others and especially, to be as honest with myself - and with you in these pages – as I am capable.


Settling Into My End Days – Or Die Trying

(Sorry about that headline; I couldn't resist.)

When the medical people say you are now eligible for hospice and for medical aid in dying (MAID), you know the end of your time on Earth is nigh.

Not that I haven't known of that outcome for these past three years, but when those two services are on offer, any wishful thinking one might have indulged in is wiped away.

A large majority of pancreatic cancer patients – nearly 90 percent - die within a year of diagnosis. With the help of my excellent doctors and nurses, the universe granted me two additional years of golden time most of which, if you don't count chemotherapy side effects, was not too much different from life before cancer.

It got to be almost funny sometimes when whatever new health issue turned up, I couldn't figure out if it was cancer, COPD or old age.

So I have no complaints about the place in life where I have now landed. Except this: what I said above about having known the eventual outcome of my disease from the beginning and the implied acceptance in that statement? Maybe not so much.

I suspect I've been fooling myself or, if I had made peace with my death as I thought I had (with a hefty dose of help from psilocybin), it slipped away while I was enjoying those extra years.

My first clue to that was a bit more than two months ago when a variety of body aches began popping up regularly. It was not long before they became a daily routine. Certainly it occurred to me then that the cancer was on the move but I shoved the thought aside and took another ibuprofen.

The second clue turned up several weeks ago when the oncologist told me on a telephone visit that my recent CT scan was “not bad.” He said it in an uncharacteristically flat tone that told me it actually was not good news.

As I had done in the past, I could have read the visit summary doctors post to my online account within a day of our meeting but I skipped it this time and tried not to think about what he said. That wasn't wildly successful and the pain continued too.

On Tuesday this week, I spent an hour on a video visit with the man who has been my palliative care provider for more than a year. I like him enormously. He is the one who told me I am now eligible for hospice and MAID, and we discussed how that will work in general as we move forward together.

In future now, we will meet every two weeks instead of monthly. I feel safe with him.

What I do not feel is at peace. As I look back today at the early days of this journey, I am surprised at what now seems like arrogance in thinking something akin to, “I've got this. I can handle my end of days.”

Yeah. Right.

I've spent some of the time since the Tuesday video visit talking with a handful of friends I am totally comfortable with but trying not to lean on them too hard.

Most strongly, what I feel now is sad. So achingly sad at the thought of leaving. To make it even more poignant, this is a most beautiful spring season here. I could be convinced that that is just because I've become a short timer but what difference does the reason make. I'm still sad.

Could I be at the beginning of working my way through Elisabeth Kubler-Ross's five (or is it seven?) stages of grief? Obviously – see above – I've had time with denial. Some unfocused anger has erupted. Just this week, the effin' ants returned to the bathroom. The whole outdoors isn't enough for them?

It could be that I am too pragmatic to bother with the bargaining stage of grief but who knows. I'd like to skip the depression stage too and go straight to acceptance.

I was so certain I had this end of life stuff under control. It's going to be awhile.


Follow-Up on Monday's Death With Dignity Post

There is so much love in your responses to Monday's post about medical aid in dying. It goes both ways, you know.

Your comments are like an injection of strength for me. When I falter about all this death and dying stuff – as regularly happens - I think about your belief in me and I can find my way forward again completing the circle of this remarkable community you and I have developed.

It is both of us, you know, that makes this work.

Reading through all your caring, kind and understanding comments on Monday's post several times brought some questions to mind – or rather, some answers to questions you did and did not not ask but are lurking there if you pay attention.

Not for the first time, you mentioned my generosity in writing about real and scary stuff here. Funny. I have never thought of it as generous. Mostly, when it comes up, I wonder if I'm being self-indulgent.

Since I was a little girl, I have kept – if haphazardly so – journals about my life and whatever else interests me. Writing has always been how I sort out difficult events, thoughts, ideas.

I was so grateful when decades ago I ran across this quotation from British novelist E.M. Forster: “How can I tell what I think until I see what say?” Yes, I thought then, exactly. That's why I do all this scribbling. And it is what I have come to do with the blog.

In your comments, there is a suggestion or two I can't locate right now that I might stop writing this blog. Not yet, my friends, not yet. I still have a lot to figure out and will want your help along the way.

That's it for today. I know this is short and doesn't really go anywhere but it's the best I can do today and I'll explain on Friday.

Thank you all for your always interesting and thoughtful responses.


Oregon's Death With Dignity Law and Me

Last week, I spent the better part of an hour in a video meeting with a physician at the medical center where I have been treated for pancreatic cancer and COPD for the past three years.

The reason for our conversation was Oregon's Death With Dignity law or, as the doctor referred to it and which phrase I much prefer, Medical Aid in Dying.

Oregon was the first U.S. state, in 1994, to enact such a statute and it went into effect in 1997. Since then, seven more states and the District of Columbia have adopted similar statutes.

• California (End of Life Option Act; approved in 2015, in effect from 2016)
• Colorado (End of Life Options Act; 2016)
• District of Columbia (D.C. Death with Dignity Act; 2016/2017)
• Hawaii (Our Care, Our Choice Act; 2018/2019)
• Maine (Death with Dignity Act; 2019)
• New Jersey (Aid in Dying for the Terminally Ill Act; 2019)
• Oregon (Death with Dignity Act; 1994/1997)
• Vermont (Patient Choice and Control at the End of Life Act; 2013)
• Washington (Death with Dignity Act; 2008)

Here is a map of the United States showing the status of each state in regard to this kind of legislation:

DeathWithDignityMap

According to the Oregon Death With Dignity annual report as quoted at the Death With Dignity website,

”In 2019, 112 Oregon physicians wrote 290 prescriptions to dying Oregonians who qualified for the Act; 188 people died using the medications obtained under the law.”

The 102 people with prescriptions in 2019 who did not take the prescribed drugs may have died without using them or may yet take them. Some people, I am told, like the feeling of control in having the drugs handy.

The up-front requirements to use the law are that the patient be at least 18 years old, a resident of Oregon, capable of making and articulating healthcare decisions and diagnosed with a terminal illness that will lead to death within six months.

There are several additional hoops to maneuver but they are not too onerous. First, the person must verbally request the drugs from the attending physician on two occasions, at least 15 days apart.

The attending physician and a consulting physician must agree on the diagnosis and the prognosis.

In addition to those two verbal requests 15 days apart, the patient must complete a written request form that requires two witness signatures. One witness may not be a relative or a physician who treats the person.

The doctor I spoke with Thursday helpfully told me that for $7, a UPS store will witness the document. I thought this odd, even kind of funny at first but I can understand that a relative or friend – and certainly an acquaintance – might not want to be part of such a request.

If either of the two physician feels the patient's judgment is impaired, the patient must be referred for a psychological examination.

From what I can tell, pharmacists can refuse to fill prescriptions for these lethal drugs. The doctor told me there is one pharmacy in Portland that does fill them. The price, he said, is about $700. Private insurance may pay the cost. Medicare does not.

A doctor need not be present when the patient takes the drug although he or she may be there if the patient asks. However, only the patient can administer the medication.

The drugs, the doctor told me, come in a bottle to which apple juice is added. The drugs cause no pain. The patient feels woozy almost immediately upon drinking the mixture, he said, and will fall into coma in four to five minutes. Death comes usually in 30 minutes to two hours. Rarely, it can be longer.

The patient can rescind the request for the drugs at any point in the process. There is, of course, no requirement that the drugs be used.

* * *

I'm writing this because I thought you might be interested and, having had the conversation only a few days ago, it is fresh in my mind now. You may have noticed that throughout, I have referred to “the patient” and not to I or me.

That is because it is hard to talk about my own death this way. (Or in any way, I suppose.) I thought, having understood from the diagnosis three years ago that I would eventually die of this cancer, I had it under control, that I accepted the eventuality and had made peace with it.

Apparently this is not so. Yet.

The question has come up now because, as I reported not long ago, the cancer in my lung is growing and due to the additional diagnosis of COPD, my immune system is too damaged for more chemotherapy that otherwise – in theory - could slow the cancer's growth.

Now, with the coronavirus that attacks lungs, chemotherapy is even moreso not an option.

So I contemplate my death a bit more urgently now. I am making peace with the fact that I will never have all the bits and pieces of my life in good order for the dear, dear friend who will be stuck with sorting it all out when I am gone. She says to me, don't worry about it. I'm trying.

My question to myself right now is how to live in the time remaining. And I do mean, live. But also, that is not to deny what is happening to me. The disease, doing what it must, marches forward even into its own oblivion. As do I.

Dying is part of living and I doubt that is something that will slip my mind. So maybe I need to find a balance.

Is there a place where life and death and meaning at least intersect if not each become part of a whole? Not that anyone has ever been able to define the meaning of life.

Undoubtedly, I'll have more to say later. Meanwhile, if you want more information about Death With Dignity laws, here are a couple of links to get you started:

Oregon Death With Dignity website
Death With Dignity National Center website

For individual state laws, search “death with dignity” and the state's name.


Cancer Pain

In the past two months or so, for the first time since I was diagnosed with pancreatic cancer in mid-2017, I live with pain. Until now, I have been incredibly lucky that the only big discomfort I have experienced was during recovery from the Whipple procedure.

Some years BC (before cancer), while I was stuck in bed with the last and worst flu I recall having, my big toe, just one big toe, hurt so badly, so deeply banging away at me, that I imagined finding someone, anyone, who would whack it off with a machete. The amputation, I reasoned in the depths of my fever swamp, couldn't possibly hurt more.

These new pains come with the territory of cancer. I call them body pains and several scatter themselves around my torso and back, rearranged in different places on different days.

As the nurses taught me when I was recovering from the Whipple, alternating acetaminophen with ibuprofen every six or eight hours takes care of pain with a reduced chance of injury to liver or other organs that might occur using only one of the drugs.

Although it takes about two hours to kick in, it works for me. And I don't need it every day. Two or three and, sometimes, four times a week, I'm pain free until evening.

The thing about pain that is not of the pounding, big-toe variety is how wearing it is. It's not that you lie curled in bed whimpering. It's that it grinds you down and after a few hours you feel as exhausted as if you've run a marathon.

Thank the gods for acetaminophen and ibuprofen.

A couple of weeks ago when I mentioned these pains to the oncologist, he did not need to go into a detailed explanation of what was happening to me. I knew I had entered a new, later phase of the disease when he said he could prescribe an opioid for me.

My only experience with that kind of drug was more than half a century ago when I was in my early twenties. After a couple of days of unending abdominal pain that nothing would help, my doctor sent me to the hospital, tests were done and still, no one knew why I hurt so much.

Several medications proved useless so I was then given morphine. It was fascinating. I have no idea what happens to other people but for me, it did nothing for the pain. It did not get anywhere near even taking off the edge.

Instead, I just didn't care. I still recall lying in that bed thinking, “Oh, wow, that is the worst pain I have ever felt. What color is it? I wondered. Does it move from here to there and back? Or does it stay in one place? Is it round or maybe square? If I poke that place, will it hurt more?” And so on.

From time to time, there were some strange-looking pink animals up near the ceiling of my room, but mostly I was fascinated with how much I hurt, feeling only curiosity as though I were studying it in someone else, trying to figure out its properties.

I've forgotten other details but eventually, they took away the morphine, the pain subsided and no one ever knew what was wrong.

When I was caring for my mother when she was dying of liver and breast cancer, she occasionally asked for one of her pain pills. One day she seemed to be in enough pain that I asked if she wanted to try the liquid morphine the doctor had left with us.

“Oh, no,” she said. “I don't want to get addicted.”

Eventually, I convinced that in her condition she was unlikely to run down the block and rob the candy store, and we were able to control her pain until she had a hallucinatory experience and refused to go there again. She died soon after that.

When I had recovered sufficiently from the Whipple surgery, the nurses in the oncology clinic at the medical center taught me how to use the medications I would need to take for the rest of my life and how I needed to eat now that a bunch of my organs had been removed.

At that time, aside from some remaining, minor pain related to the surgery that would soon dissipate, I felt almost like a normal person. But one nurse explained that should there be pain at a future date, the center has an entire department devoted to pain control that I could rely on.

So when the oncologist asked me if I wanted him to prescribe an opioid, I declined. Given my own and my mother's experience, I'll wait until I need it.

I mention all this because when I made the decision three years ago to write about this cancer journey, I promised myself that if I would do it at all, I would always be honest, that I would not omit the hard parts and I would not sugarcoat it.

Sometimes I have a bad pain day. Usually that results when I think, in the morning, that it's not so bad and I can do without the acetaminophen or ibuprofen. Wrong! If it hurts in the morning, it always gets worse. But I'm a slow learner and still sometimes try to get through the day without the drugs. It never works.

Please keep in mind, that this is a report, not a request for advice. What I like about what happens in the comments on this blog is that often, many of you have thoughtful responses that relate to living with the circumstances we are stuck with. I believe that is valuable for all of us and I greatly appreciate it.


“You are an Anomaly” Said the Oncologist

What an amazing amount of loving kindness you all left in the comments of last Monday's post. There are not good enough words to say how much you all mean to me. The best I can do is, thank you.

* * *

After several minutes of pleasantries at the beginning of our tele-medicine conversation, the oncologist told me that my most recent CT scan is “not bad.”

Not bad in the sense that although the cancer has increased in my lung since the previous most recent scan, the growth has been slow. This is surprising, he said, because I have had no chemotherapy (meant, in my case, to slow cancer growth) for a year.

And, apparently, it is enough of a surprise to classify me as an anomaly – an outcome that is not what is expected with my type of cancer and treatment. Don't let that fool you, though. The cancer continues to do what cancer does – grow and spread.

For now, said the doctor, additional chemotherapy is not recommended due to COVID-19's propensity to attack lungs and my impaired immune system. Of course, the chemo clinic takes every precaution against infection but nothing is perfect and I am more susceptible than people without lung or breathing difficulty. So no chemo and I am not certain that if it were recommended I would do it again.

What I didn't tell you in last Monday's post where I announced my week-long hiatus, is that the largest part of the reason for that downtime last week was to keep my anxiety to myself. It's always that way for me: pretty much full-time mental paralysis waiting to discuss a CT-scan with the doctor.

You might recall this paragraph from a week ago:

”And in recent weeks, what I believe to be late(r)-stage cancer symptoms: increased fatigue, body pains...waning appetite, weight loss and a golf-ball-sized growth I discovered four days ago on an inner thigh.”

The waning appetite had already begun to turn itself around when I spoke with the oncologist on Wednesday and the weight loss is righting itself too.

As to the body pains, the doctor said he could prescribe an opioid but I will wait. So far, over-the-counter medication is working and in the past seven or eight days, I have had almost as many pain-free days as painful ones.

So there you are – the cancer is on the move, although not too quickly. Appetite and weight are back to what is normal for me. Pain is controllable. And – oh yes, that golf-ball-sized growth in my groin.

Not cancer. I had to see a doctor in person to deal with what is called, she told me, Bartholin Gland Cyst. I was her second case of it that day.

It is relatively common and usually treated with an antibiotic and/or drainage of the cyst. I've opted for door number one for now and so far it is down to less than half its largest size.

So, that turned out to be a minor distraction compared to the daily upkeep of cancer and COPD.

There is no missing the fact that I am slowing down. Although the heavy fatigue I mentioned last week has morphed into lighter fatigue, there are those pesky pains. When there are none, I spend the day on alert, waiting for one to stab me here or ache there.

I am trying to stop doing that, with no discernible success yet.

You would think by now that I would have this living-with-a-terminal-disease stuff down pat. But no. My body keeps coming up with new ways to get at me, and my mind seems to have a mind of it own – dragging me around to check out some of the darker corridors of my thoughts.

Nevertheless, living is still good most of the time, and I'm not ready to trade it for anything else – especially now that I am officially an anomaly.


Trying to Make a Respite From and For Myself

Following a diagnostic procedure the day before, on 1 June 2017, a surgeon stood in my hospital room and told me I had pancreatic cancer.

Oof. I wouldn't wish that moment on anyone.

I had no illusions about the disease. My father had died of it and I knew that although few people get it (compared to breast or lung or prostate cancer), most of them die within a year or so.

A week later in a meeting with that surgeon and an oncologist, I was told that I was a good candidate for surgery because the lesion was located at one end of my pancreas and I was in excellent physical shape despite my 76 years.

They didn't pull any punches about what that surgery – called the Whipple Procedure – involves. In addition to removing a whole lot of one's innards (half the pancreas, the entire duodenum and gall bladder, a portion of the stomach and some other, smaller bits and pieces), all the connectors among organs would be rearranged and after more than 12 hours in surgery, it would be up to six months before I was completely recovered.

However, it would give me more months of life than I would have without the surgery.

A funny thing happens when you hear something like that: I found out how much more deeply I care about being alive than I'd ever thought about before.

As I've mentioned here, I made the choice right away to follow instructions of my surgeon and other physicians as closely as possible and let them run the show because they had so much more experience at this than I did or do.

That strategy has worked well for me. In June it will be three years since the surgery and although I've now also been diagnosed with COPD, pulmonary rehab gave me good tools to use to live as well as possible with that.

Here's why I'm doing this recap today: I've felt good or good enough for so long that I would like to experience – make that RE-experience - normal life, life before cancer. Because for the most part that's how I feel.

Yes, my energy is way below what it was pre-cancer and by mid-afternoon, I'm done for anything much more taxing then a book or movie. Residual pain, mostly minor, and some other physical artifacts get in the way sometimes but they are not debilitating.

Pills, inhalers and diet requirements need daily attention. And when I forget my new circumstance and walk at my previous speed, COPD forcefully reminds me that is no longer possible, as I heave to catch my breath.

Then there are the medical appointments. In person check-ups and check-ins, blood draws, port flushes, scans and more. I know all the doctors, RNs, technicians, schedulers and medical assistants quite well now. I think of them as friends but I wouldn't mind less time dealing with cancer and COPD.

If you've been hanging around here since this journey began, you know how I railed against becoming a “professional patient,” but that's what I've been now for a long time and it's not going to change.

I'm not complaining about the facts of all this which, under the circumstances, keep me rolling along quite well. And with a little practice, as new needs came about, I've folded them into daily routine not too much different from brushing my teeth.

But it's been long time and I'm tired now of accommodating cancer and COPD. I'm tired of so much of what I do every day being related to two deadly diseases. I'm tired of wondering if every twitch is a sign that the end is nigh.

Please don't think that I am wishing to die – far from it. Nor am I slipping into fantasy.

What I want is to figure out a way of being, of carving out a space to live in that doesn't always include disease at the edge – and forefront, too - of my consciousness.

Sometimes the wish comes to me as empty space and time, when cancer and COPD take a nap for awhile and leave me as I was before all this happened. A mini-vacation. Maybe even a whole day of it now and then.

Don't get me wrong. I am acutely aware of how lucky I am. Most people with my cancer are dead long before now. But I wish I could figure out how to make a respite for myself, some time to pretend – nay, forget - for a little while that this didn't happen to me.

Am I asking too much? I think I can't be alone in wanting this and that I can continue to be the realist that I am while taking a little vacation. I just haven't figured out how to do it yet.


Pancreatic Cancer. Plus The Alex and Ronni Show

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

LewisPrideParade2019

* * *

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

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


The Remarkable Medical and Health Professionals I Know

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am so deeply grateful for them.


When Breath Becomes Air by Paul Kalanithi

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Meanwhile, like Paul Kalanithi quoting Samuel Becket,

“I can't go on; I'll go on.”

Thinking Out Loud: Shifting Perspectives Toward the End of Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Some Satisfactory Health News

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

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

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

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

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

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

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

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

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

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

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



What It's Like to be Dying

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Some Random Thoughts on End of Life

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

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

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

* * *

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

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

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

* * *

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

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

* * *


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

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

* * *

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

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

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



Those Bogus Cancer Cures

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

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

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

Yeah, right.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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