96 posts categorized "Cancer"

Crabby Old Lady, Sales People and Cancer

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

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

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

TYMWC: (blank look)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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




What Do You Do All Day in Retirement?

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

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

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

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

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

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

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

And so on.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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




Cancer Update Plus The Alex and Ronni Show

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

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

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

And now I have some cancer news.

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

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

Woo-hoo.

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

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

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




When Cancer Becomes the Norm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Excuse me now while I have a nap.




Cancer Test Anticipation

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

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

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

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

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




Robot Doctor Tells Man He Has Only Days to Live

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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




Alex Trebek and Pancreatic Cancer

You can imagine, I'm guessing, that every time the words “pancreatic cancer” show up in front of me online, they grab my attention.

Even though pancreatic cancer is rare compared to such cancers as lung, breast and prostate, it has an outsized impact on me and seems to appear in media headlines more frequently than one would guess for its small numbers.

Or maybe it's just my personal heightened awareness and knowledge of how lethal it is.

Whatever, it was a shock early last week to see long-time Jeopardy! host, Alex Trebek, paired in headlines with those dreadful words.

Within a day of the announcement, Trebek had issued a short video statement via YouTube. Here it is with the transcript below:

"Hi everyone, I have some news to share with all of you and it’s in keeping with my longtime policy of being open and transparent with our Jeopardy! fan base. I also wanted to prevent you from reading or hearing some overblown or inaccurate reports regarding my health.

“So therefore, I wanted to be the one to pass along this information. Now, just like 50,000 other people in the United States each year, this week I was diagnosed with stage 4 pancreatic cancer.

“Now normally, the prognosis for this is not very encouraging, but I’m going to fight this, and I’m going to keep working. And with the love and support of my family and friends and with the help of your prayers also, I plan to beat the low survival rate statistics for this disease.

“Truth told, I have to! Because under the terms of my contract, I have to host Jeopardy! for three more years! So help me. Keep the faith and we’ll win. We’ll get it done. Thank you."

Did you note the part about “stage 4”? That means Trebek's cancer has spread to other organs and, like mine, is not curable although chemotherapy and some other treatments can manage symptoms and improve quality of life for awhile.

It feels to me that Alex Trebek has been at the helm of Jeopardy! forever. (Actually, he has been hosting since 1984.) A strong, steady, down-to-earth presence in Americans' lives. How could this happen?

Ken Jennings, who won 74 consecutive games of Jeopardy!, wrote this about Trebek last week in The New York Times:

”...we all think of Trebek as 'Alex,' that avuncular, Canadian-accented presence who has been in our homes every weeknight for 35 years. Whether we watch it regularly or not, we all rely on Jeopardy! always being there. It’s no longer an entertainment property; it’s an institution.”

So it is. And so is Alex Trebek.

I've watched Jeopardy! off and on pretty much all the years Alex Trebek has been hosting. Sometimes regularly, sometimes as a drop-in, and who can help but play along.

In his video announcement, Trebek invoked the commonly-used fight metaphor about “beating” cancer and I'm sorry he did. It is already exhausting to live with cancer and we should not be urged to use our remaining, precious time fighting the inevitable.

From my point of view, it is the doctors who do the battling; I just follow their instructions and am grateful for the extended life they have given me.

That quibble notwithstanding, it's a good thing that a beloved public figure as Trebek has made his diagnosis public. The small number of pancreatic cancer cases means that it gets little attention and few research dollars compared to the big-time cancers.

Although progress is being made, there still is not a diagnostic test for pancreatic cancer and it is extremely difficult to find before it has reached late-stage development. I was just luckier than many that mine was detected at stage 2.

So perhaps Alex Trebec's well-known public presence will light a fire under some people and some institutions who can afford to fund the research necessary to find a better treatment and even a cure for this terrible cancer.

Meanwhile, I'm sure that all of us and millions of others agree with Claire Sattler, a high-school student who won the 2018 Teen Jeopardy! competition:

“I hope he knows that he does have the whole support of every person who’s been on Jeopardy, every Jeopardy fan, along with his family and friends,” she [told The New York Times]. “Whether he’s around for 20 more years or whether he’s not, he’s made such an amazing mark on so many individuals.”



Living While Dying

Snoopy-cartoon

As much as I like the Snoopy cartoon - which is all the more admirable for its simplicity – dying is, nevertheless, more complicated than that.

Some people die quietly in their sleep, others die suddenly in, for example, a traffic accident, while another group of us slowly dies while being treated with drugs meant to extend of our lives even though we know the disease will eventually kill us.

Twenty-seven years ago, my mother chose no chemotherapy. She didn't want to be sick or drugged during her final months of life. I chose differently. So far the chemo side effects are minimal and the professional guesstimates of extended life sufficiently long to make the treatment worthwhile – at least, to me.

You might have guessed that I have put a lot of thought to this interim period. Back in June 2017, when I was first told I had pancreatic cancer, I made a bunch of decisions at least two of which have proved fruitful.

  1. Spend every day living to the fullest extent I desire

  2. Talk about my “predicament” as much as I want

For number 1, I have surrendered to life and living as fully as possible because what other choice is there? I don't have the first idea of other possibilities.

One thing that gets in the way is that I feel apologetic when the simple life I lead comes up in conversation, when someone asks about my bucket list (none) or fulfilling lifelong dreams, etc.

I don't know why I'm touchy about my life and I'm working on figuring it out. In addition to having cancer I'm old, nearly 78, and I'm slower than I used to be. There was a time when I tried to hide that.

Nowadays I have no difficulty behaving like an old person even though American culture recognizes (begrudgingly) only old people who act like younger adults.

The amazing plus side of number 2, talking openly and often about my cancer and about dying, is that when I do it, it is easier for the people I'm speaking with to do so too. And writing about my predicament on this blog has freed up readers and friends to leave messages that stick with me every day, long after they are said.

My friends Gail and Jim wished me “a safe and harmless journey.” Isn't that lovely. And not long ago, another friend, Wendl Kornfeld, signed off with “May you live long enough.” Both of these being beautifully inspiring.

But we need to talk more about dying until it becomes a normal part of life. It wasn't always hidden away, you know. Until 100 years ago or thereabouts, most people died at home among family and friends. Even the children were involved.

Personally, I am fascinated with these final weeks and months of my life, eager to let myself follow natural inclinations to wherever they take me.

Palliative care physician and author Kathryn Mannix also believes it is time to break the taboo surrounding death, as she explained in this March 2018 video from the BBC:




Cancer Update – 1 March 2019

I wrote about some of this last week, but I'm coming at it from a different direction today.

It was November 2018 the last time I wrote a cancer update. The good thing is that not much has changed in terms of the disease since then – but my behavior and attitude drift from here to there and back again.

Some of that is a result of chemo side effects. A difficult one is loss of appetite. It's important for my continuing health to keep up my weight but for several days after a chemo infusion, I can barely put a bite in my mouth without retching and in four or five days, I can lose that same number of pounds.

When my appetite returns I spend the next week stuffing myself with all the high calorie food I can eat to increase my weight before the next infusion. And then I start over again.

More difficult than the weight loss and gain, however, is fatigue. I feel fine for two days or so following the infusion; then I'm exhausted for two or three days, sometimes needing two naps and early bed each day for that period of time. After that, I feel like a normal, healthy person until the next infusion.

The most difficult thing that comes with loss of appetite and fatigue is a really bad mood. Terrible mood for two days or so during which it feels like it's time to bring this to an end as I run scenarios of my final day.

It doesn't matter that I've experienced this often enough now to know that it lifts entirely within two days. Knowing that doesn't make getting through it easier.

And yet. And yet.

With all that, what a remarkable series of events I'm living through, especially for a short-timer whose life is unwinding now during a period I had expected to become slower and quieter until time to go.

Instead, some of the most extraordinary events of my life have been taking place:

Meeting the son (and his family) I gave up for adoption 56 years ago

Fulfilling my long-held intention to have a magic mushroom experience in the face of impending death

And, a near dispensation from chemotherapy side effects

No, I didn't forget the appetite problem, fatigue and horrible mood. But compared to the long list of those and other potential side effects I was given to expect when I began this chemotherapy (some of them quite icky), I been lucky beyond measure.

The side effects I have are short-lived – about three days every two weeks – and astonishingly, they have become lighter and easier to tolerate with each infusion.

No one can tell me how much time I have left. It depends on how long this chemo is effective and how the cancer develops from here. My stamina and energy are down; it takes about twice as long to do almost anything I once did faster but I don't dislike the slower pace.

I seem to want more time alone than before and spend some of it digging around for a deeper understanding of myself and of the meaning of life. Fat chance I'll get anywhere with that second one but why not try.

This blog is important to me. I write it as least as much for myself – to figure out what I think and believe – as for you, dear readers.

Living is easier now without ambition, worldly goals and urges to compete. The worst that can happen (“you have incurable cancer”) has happened now and I've become accustomed to knowing that. It's all right.

In fact, this simple, little life I have may be the most contented I have known in my near 78 years. How did I get so lucky.

I know there are a goodly number of TGB readers who have and/or are living through similar circumstances. Does any of this resonate with you?




On Living With Health and Ill Health

Thank You: You guys are amazing. This year's donation drive ended on Monday and your generosity is stunning. There will be no problem in securing the services necessary to keep TimeGoesBy open online and available for at least five years after I've died.

You are a terrific group of readers that any blogger would envy. Thank you so much.

* * *

As most of you know, my most recent cancer test reported remarkably good news. The radiologist's review of the CT scan stated in part that

”Since 11/28/2018, markedly improved appearance of the lungs with decrease/absence of multiple new and enlarging nodules from the most recent study. Appearance is similar to 10/5/2018 staging CT. No definite new nodules.

Wow. We all rejoiced. It doesn't mean the cancer is being cured. This chemo can't do that. But it is doing what it is meant to do – slow the growth of the cancer so that I will have a longer healthy period of time than I would have without the chemo.

One of the strangest things (to me) associated with this cancer is that if not for chemo side effects, I would not know I have a deadly disease.

Do away with chemo brain, loss of appetite and general fatigue that plague me for three, sometimes four days following the chemo infusion every two weeks and I would feel like I did before I was diagnosed with pancreatic cancer – healthy.

Which is how I feel for 10 or 11 days at a time after those side effects subside, until the next infusion starts the process again.

It's as though I live a double life now - about 25 percent of my time as a sick person; the rest of it as a healthy person.

The intensity of the fatigue (the worst of my side effects) is hard to predict – sometimes I am tired but mostly functional, other times barely capable of crawling out of bed.

The contrast between healthy days and not healthy days has given me a new perspective on how I (and, I suspect, many other people) differentiate between those of us who are healthy and those who are not.

Until I was diagnosed with pancreatic cancer in May 2017, I had lived 76 years in good health, nothing much more serious than a bad flu now and then. I smoked cigarettes for many years but beyond that I paid a reasonable amount of attention to healthy behavior – eating well, exercising regularly.

I hardly ever thought about my overall health and always assumed most people were as healthy as I had been. Now that I have reached old age – a period of time when, as we here all know, a large number of health issues, minor and deadly serious, can upend our lives – I have gained a new perspective.

These days, I look at healthy people of all ages with wonder. They wear their health so easily, as if it will always be there, and until recently I was a member of their tribe, unaware that my health status would ever change.

Now, on the days when I feel as normal as before the cancer and I can almost pretend that I can ignore the cancer, there's an itch in the back of my (saner) mind repeating something like, “Don't get too cocky, honey. You know how quickly this can change.”

And, eventually, will change.

I don't have any conclusion to this rumination. I'm just surprised how, for so many years, I took my good health for granted.




Cancer Tests and Magic Mushrooms

Wow oh wow oh wow oh wow.

After all your wonderful well-wishes on Friday's post, I wish you could have been there on the telephone with me and my new oncologist Friday. As we were getting through the preliminary niceties, he interrupted us saying, “Let me get to the point first.”

The thing about that is you wait and wait and wait, rocketing back and forth between fear and confidence, and suddenly the answer is right there, right now.

Sharp intake of my breath on my part and then he says – this is close to verbatim:

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

This does not mean the cancer is curing itself. It means the chemotherapy is doing what it is supposed to do – slow the growth of the cancer to give me longer healthy time to live.

The doctor is so encouraged that if the news is as positive when the next scan takes place in two months, he will extend the scan interval to three months.

For now, however, Wow oh wow oh wow oh wow.

Chemo continues every two weeks until it doesn't work anymore. No one knows how long that is – it's different for every patient. But I'm encouraged now that I will still be here for my 78th birthday in April. For a long time I didn't believe that.

MAGIC MUSHROOMS
A couple of comments last week are of some concern to me. In one of them, the writer says that since I was fearfully anticipating the test results, my psilocybin session that freed me from my paralyzing fear of dying, must have failed.

Perhaps the writer doesn't understand that humans can't live with two and more emotional conditions, even strong ones, at once. I thought everyone knew this.

I can be, and was simultaneously, scared of test results and not afraid to die.

He also suggested that to maintain the results, I would probably have to have regular psilocybin trips. I don't suppose it would hurt and I have supplies for micro-doses but it certainly hasn't failed for me although I don't know about other people.

Speaking of psilocybin and other psychedelics used as therapy for depression, anxiety and PTSD among other conditions, I was surprised and pleased to see that in at least one survey, a majority of Americans support the use of these drugs for treatment.

As reported at YouGov that conducted the survey in 2018,

”Despite the stigma surrounding these controlled substances, new data from YouGov shows that many Americans are ready to embrace psychedelic therapies.

“What’s more, a relationship appears to exist between higher levels of education and increased support for psychedelic research and treatments. At each increasing level of education, there's a corresponding increase in support for medical research into the potential benefits of psychedelic substances, such as psilocybin mushrooms, MDMA, and ketamine.

“53% of all respondents support medical research into psychedelic drugs, and this number increases to 69% for respondents with graduate degrees.”

Here is the YouGov chart on support for psychedelic therapies among education levels:

Psilocybenchart

Both the state of Oregon and the city of Denver already have ballot measures approving such use of these drugs ready for a vote in the 2020 election.

You can read more at YouGov.

Again and from my heart, thank you for your many words of love and support through not just this latest test scare, but for the entire 20 months so far since my original diagnosis of pancreatic cancer. I love you all.




Oops. Sorry About My Wednesday Mistake

On Wednesday, I told you I would get the results of my latest CT scan yesterday, Thursday. Wrong.

Right here on the desk in the notebook where I keep important information from meetings with doctors and nurses, in big, black letters, it says:

“Dr. will call Friday with scan results.”

I would like to blame chemo brain for my mistake but it had been two weeks since my last treatment so that is probably not the cause. Chemo brain can make you stupid for a few days but it had subsided by the time I was screwing up the Wednesday post.

So, assuming I do hear the results sometime today and to spare you, kind and gentle readers, any test-results-wait-anxiety I may have infected you with on Wednesday, I will slip in the salient information on the Interesting Stuff post tomorrow.

Meanwhile, I ran across a recent BBC story about “cancer cliches” - words and phrases that many cancer patients reject.

We discussed this a bit last August when I explained why I dislike phrases like “battling cancer” and “fighting cancer”. BBC cites a survey of 2000 people who have or have had cancer, reporting that I'm not alone.

”Calling a person's cancer diagnosis a 'war' or a 'battle' and saying they had 'lost their battle' or 'lost their fight' when they died, were other unpopular descriptions, according to the poll carried out by YouGov.

“Articles in the media and posts on social networks were found to be the worst offenders for using such language.

“Mandy Mahoney, 47, has incurable metastatic breast cancer...Mandy said it was not necessary for people to 'swallow a textbook and come up with all of the key phrases' to talk to someone with cancer, and it is fine to not always know what to say.

"'If you tell me it's awkward and you don't know what to say I will find a way to make that right for you, and actually on some occasions I might say 'we don't have to talk about it'.

"'But just be real.'"

There is more detail and a different opinion from a body builder at the BBC site.

I know there are a number of TGB readers who have or have had cancer. How you do you feel about these words and phrases?




A Week of Worry

While some of you are reading this today, I am at the medical center to drop off a couple of vials of blood with the phlebotomists (wonderful word), meet with my new oncologist and then undergo an ultrasound scan to (gulp) determine if the chemo I've been taking for two months is doing what it is meant to do.

What that is, is to slow the growth of the cancer – it cannot cure the cancer - thereby giving me some number of extra months of healthy life.

Because the scan happens every two months, it is easy to forget about it for six or seven weeks and get on with everyday life.

But not this week.

My previous chemotherapy regimen failed at its job so I know what that conversation with the doctor is like.

This is my first scan since the new chemo began and I'm nervous. You might even say scared. How about frightened, terrified and unnerved?

They all apply and sometimes, this week, it had been hard not to cry. Anticipation is a bitch.

There is no dearth of advice on coping with what a couple of websites call “scanxiety” - itself a grossly inept attempt to make light of a serious health predicament.

Worse, the advice itself doesn't improve things. It ranges from surrounding oneself with positive people and thinking of scans as maintenance (clearly written by someone who never had cancer) to this deeply misleading nonsense:

”Even when we do find that cancer has spread, we can usually craft a plan to control the disease so it doesn’t continue to spread and cause more problems.”

Not true.

Which leaves me exactly nowhere except to tough it out. I wish it were not so but I'm pretty sure that a not small percentage of you, dear readers, have been exactly where I am right now. Somehow we survive the anticipation.

I'll let you know what the scan reveals.




Living and Dying

Well, I've gone and done it again - read yet another book on dying when I said I wouldn't do that.

This one, titled Dying: A Memoir, by Australian writer Cory Taylor who died of melanoma in 2016, is a whole lot more autobiography than death but there are a few points that resonated with me.

Taylor's book is not the only one that speaks about working through anger as a universal response to a medical death sentence.

Most books about death do that but I've never experienced it and as I may have mentioned in the past, the one thing I have learned all on my own through 77 years of life is that if it happens to me, it happens to thousands, millions of others.

I'm pretty sure that just as we each find our own way to live our lives and no two are alike, that applies to dying too – at least for those of us who are privileged to be given some time to contemplate this monumental transition into the unknown.

I've never asked myself, “Why me?” That is not to say I'm more virtuous than anyone else; it just doesn't occur to me. I'm more likely to ask, “Why not me?” and perhaps that's related to the fact that everyone in my family dies of cancer. What else should I expect.

Another assumption in much of the writing about dying is that we-the-dying spend a good deal of time reflecting on our pasts. Really?

Once again, not me. I've been parsing my past for all these 77 years. I know my regrets, I've made as much peace as possible with my transgressions, learned what life lessons I could glean and moved on.

How I feel about the past is how I feel about an award I once won. I wanted it badly and was thrilled when my name was called. But the next morning I was disappointed that I couldn't summon the same feelings of joy and excitement as the night before.

Of course not, I eventually realized. Because it was yesterday. What's on for today is what I cared about that morning.

A third concern of death writers – amateurs (those who are dying) and professionals (reporters and “experts”) - is dealing with unhappiness and depression.

That can't be easy but again, not me.

Some of my attention nowadays is taken up with the anticipation of death in the relatively near future. I'm almost accustomed to it now as an appendage to most of what rolls around in my head.

Which is usually about the day's priorities. I'm very much a live-in-the-now kind of girl which is to say, death sentence or not, is there something yummy for lunch?

Have I told you that food is a great, good advantage of my personal cancer predicament? As the nurses regularly remind me, keeping up my weight is crucial to my well-being so that I don't fall into frailty. That means I can eat pretty much any- and everything I please.

The higher the calorie count the better and it should include a lot of animal protein, fats of all kinds and most other stuff I used to think is unhealthy for me. Well, in fact it is still unhealthy, but as one of the oncology nurses told me, “The cancer will kill you faster than the diet.”

So keep eating. (I'm fairly certain there are a couple more orange cranberry muffins in the freezer.)

What I am finding, at least for the moment and subject to change over time, is that dying isn't too different from living. Certainly that “predicament” is never out of sight or mind, but for now it doesn't matter much in day-to-day life.

Yes, I count out my pills once a week, I show up for chemo sessions and worry a bit about what a new scan will show about how or if the chemotherapy is working while ruminating on this ultimate existential quandary.

It doesn't feel too much different from life before diagnosis.




Letting Go When it is Time to Die

In last Friday's discussion here of physician-assisted death, reader Mary left, in part, this comment about who should have the right to use this service:

”I’d take this even further than if one is terminally ill,” wrote Mary. “I would definitely include Alzheimers. I would want the choice to be able to end my life if I was just old, tired, not feeling well and simply ready to go having had a good long life.”

This got me thinking about my Great Aunt Edith.

She was a fascinating woman, ahead of her time by miles but today isn't the place for her full story, just the end of it.

For 20 years or so leading up to Aunt Edith's death at age 89, I in New York City and she in Portland, Oregon spoke on the phone for an hour or so every weekend.

We talked about everything under the sun and although current affairs and politics were high on our agenda, there were books and movies and recipes and and all sorts of things to talk about. We never ran silent.

In between, Aunt Edith snail-mailed (no internet yet) me New Yorker cartoons, magazine and newspaper articles and other assorted information she wanted to share with me.

It was a lively relationship even at such a long distance from one another.

After many years, I noticed some slippage in her interests. Fewer snailmail envelopes came my way. Occasionally, she lamented that her old eyes got too tired to read easily anymore or even watch television sometimes. Her political opinions became fewer and more muted compared to the past.

This didn't happen all at once. In fact, by the time I noticed it, it had been there for months, slowly expanding – or, perhaps, I should say contracting. After a year or more, I realized that she was gradually letting go of the world around her.

Her interests continued to diminish until not too far short of her 90th birthday, Aunt Edith died.

Ever since then, I have hoped for a similar death, that when it is time to go, like Aunt Edith, I will have lost interest in the worldly things that engage me and lead me now.

Well, at least until the demise of the Trump era presents itself. I will be mightily pissed off to miss that.

Which brings me back to Mary's desire:

”I would want the choice to be able to end my life if I was just old, tired, not feeling well and simply ready to go having had a good long life.”

My first thought when I read that was, “Of COURSE that should be true.”

One of the things that is hard about being old in the United States, is that the “rules” - that is, the types of care and care homes, medical procedures, medications, health advice and government policy decisions affecting old people are made by people who are not old, who have no personal experience at growing old.

A whole lot of them think they know what is best for old folks. But aside from professional caregivers, they do not. The ultimate decision makers – politicians and corporate honchos – don't know and I don't think they much care either.

One example, pharmaceutical companies hardly ever include people older than 50 or so in drug trials so physicians have no idea how dosages should be adjusted for old people's bodies that function differently from younger adults.

And in the six or seven U.S. states that allow physician-assisted death, the politicians who drafted the legislation severely restricted the circumstances under which it may be used.

Why in the world should this be so? Whatever one's physical and health condition, why shouldn't people be allowed to end their lives when the time feels right to them?

Some have argued that people can shoot themselves or stop eating or chase down other means of dying. But why should they when there is a humane way to death not involving shocking violence or difficulty in carrying it out?

In monitoring myself since my cancer diagnosis 20 months ago, I've noticed a reduction in the intensity of some of my interests. I've dropped many political, current events and even health and ageing newsletters I've read regularly for years.

It feels similar to what I saw with Aunt Edith gradually bowing out of her engagement with life and the world around her.

I am convinced that I have been going through the early stages of this disengagement and I will know better than anyone when it is time for me to go. I've made all the assisted death arrangements with my medical team but I can do it only in one circumstance: when doctors decide I have fewer than six months to live.

Maybe that's not the right time for me. And anyway, why should the state care or regulate when an old person wants to take his/her leave?




Physician Assisted Death

It's also called “Death with Dignity” and “physician-assisted suicide” among another name or two. What is important to know is that it is NOT the same thing as euthanasia which is, by definition, understood to mean that a physician acts to end a patient's life.

Generally, I use the phrase “physician-assisted death” rather than “physician-assisted suicide” because “suicide” is such a loaded word. Also, “Death with Dignity, which is catchy, seems pretentious. Better to just say what it is plainly and simply.

Physician-assisted death, by whatever name, refers to a physician supplying the means of death but with the patient administering the lethal medication. This is legal in seven U.S. States: Oregon, Washington, Vermont, Montana, Hawaii, California, Colorado, and Washington, D.C.

Oregon, where I live, was the first state, in 1997, to legalize physician-assisted death and I'm grateful to have that choice which I will use, depending on circumstances, when the time comes.

In Oregon, it is called the Death with Dignity Act (DWDA). You will find the full statute here.

And these are the are the most salient points of how the law works, from the oregon.gov website:

”The patient must make two oral requests to the attending physician, separated by at least 15 days.

“The patient must provide a written request to the attending physician, signed in the presence of two witnesses, at least one of whom is not related to the patient.

“The attending physician and a consulting physician must confirm the patient's diagnosis and prognosis.

“The attending physician and a consulting physician must determine whether the patient is capable of making and communicating health care decisions for him/herself.

“If either physician believes the patient's judgment is impaired by a psychiatric or psychological disorder (such as depression), the patient must be referred for a psychological examination.

“The attending physician must inform the patient of feasible alternatives to the DWDA including comfort care, hospice care, and pain control.

“The attending physician must request, but may not require, the patient to notify their next-of-kin of the prescription request.

“A patient can rescind a request at any time and in any manner. The attending physician will also offer the patient an opportunity to rescind his/her request at the end of the 15-day waiting period following the initial request to participate.”

As you can see, the requirements are fairly strict. Further:

”The law does not require the presence of a physician when a patient takes lethal medication. A physician may be present if a patient wishes it, as long as the physician does not administer the medication him/herself.”

You can find pretty much everything you want to know about Oregon's DWDA here.

TGB reader Elizabeth Kurata reminded me this week about an Oregon couple who, in 2017, chose to use the state's DWDA law to end their lives together. As Time magazine reported:

”On the last morning of their lives, Charlie and Francie Emerick held hands. The Portland, Ore., couple, married for 66 years and both terminally ill, died together in their bed April 20, 2017, after taking lethal doses of medication obtained under the state’s Death with Dignity law.

“Francie, 88, went first, within 15 minutes, a testament to the state of her badly weakened heart. Charlie, 87, a respected ear, nose and throat (ENT) physician, died an hour later, ending a long struggle that included prostate cancer and Parkinson’s disease diagnosed in 2012.”

The couple had allowed one of their children, Sher Safran, to make a documentary about the end of their lives, Living and Dying: A Love Story. Here is the trailer:

You can watch the full 45-minute documentary at Vimeo.

Is physician-assisted death a choice you would make for yourself?




Cancer and Mood Changes

Did you ever wake up in a bad mood that affects you all day? Was it a dream that caused it? Hormones? Something you ate? Who knows?

Other times you can – sort of – identify the cause: you're frightened about something or worried or sad or unhappy for reasons that are generally obvious. Aside from chronic depression (which news stories tell me is widespread), dark moods eventually lift and we move on.

Nowadays, since I was diagnosed in October with inoperable cancer, I can easily identify the cause of black moods: it is the aftermath of chemotherapy, those days when I'm physically unwell that produce grim thoughts and feelings.

That's when I become convinced I will die before the day is out, before I have finished notes for my healthcare proxy and beneficiary to help her find all the information she will need.

It's when I imagine I will die before anyone thinks I will and lie rotting in my bed until someone wonders where Ronni is.

It's when I can't read or watch television because my deep, dispirited mind tells me there is no point to doing anything because I will be dead soon.

Yes, I know I have told you about how much I believe death is part of life, about how curious I am about these last weeks and months, and how lucky I am to have this have time.

But I also have days with dreadful thoughts that drag me down below where I think I can ever crawl back out again.

At the time, this always feels more real that the good times - until...

Like Saturday morning when the chemo fuzziness and fatigue lift and I'm a normal person again. (And no, I don't need any advice - I'm just reporting the weather from the frontier.)




Fighting Cancer

Is cancer, do you think, the most dreaded word in the English language? If it's not, surely it is in the top five.

Nobody wants to hear that – cancer - about themselves or anyone they love and in my case, when they first told me about my pancreatic cancer in June 2017, it took awhile for me to believe it.

People may not have noticed before but once they are diagnosed and weighing potential treatments they hear a lot about “fighting” cancer. On television commercials, at websites for support groups, on teeshirts and from other patients too. “I'm going to fight this thing,” they say. “I'm going to beat it.”

A year and a half later I'm still wondering what that means, to “fight” cancer. I can't punch it in the nose. Or chase it out of town. Perhaps I'm supposed to be extra vigilant in some secret way to keep it from killing me.

Early on in my cancer odyssey, I rejected the ubiquitous vegetable diets that promise to cure cancer, along with suspicious clinics in other countries. (Do not ever forget: if there were a cure for cancer, we would all know about it.)

I was (and still am) being treated at a world-class cancer center and I figure these doctors, nurses and surgeons know a whole lot more about cancer than I could ever learn on the internet.

So I listened to them. I still do. And I do what they tell me.

The massive Whipple surgery gave me about 10 cancer-free months before two new cancers showed up. There is nothing to help, the doctors tell me now, except chemotherapy that may delay the growth of the cancers for awhile to give me some more healthy time.

So as long as the chemo gives me more good days than bad, I'll continue with the doctors' advice. But “fight” cancer? Not me.

I still don't know what it means I should do but it sounds like it would wear me out or make me unhappy. I feel healthy still most of the time and I want to live the time I have in the best possible ways. Fighting doesn't fit that.

I'm still curious, however, about what people mean when they say that.




In the Space Between Life and Death

Leafing through the notebook where I record information from meetings with various physicians and nurses, I found several estimates of the time I have left on earth. They have different shadings of meaning.

One tells me that if I had rejected the chemo I now take every two weeks, I'd have nine to 12 months. Another says six to eight months WITH chemo. A third thinks the chemo will give me up to a year. And so on.

Of course, these are guesses. But they are based on these professionals' experience with many cancer patients and the differences come in because each patient's body is different as is each cancer.

This only points out that however much we want to believe we have control over our lives, we do not. (Leaving physician-assisted suicide available in a few U.S. States and other countries aside), death will find each of us when he or she decides our time here is done.

Following my terminal cancer diagnosis, I have gradually come to spend my time now in a middle space between life and death. Or, sometimes, in both places at once.

Living has become both larger and smaller. Smaller in the sense that I don't much want to go anywhere. I have no bucket list and unless someone is paying for a first class ticket, I'm never getting on an airplane again – it's inhumane the way the airlines pack people into coach.

At home, I love spending time with friends and soon, with my newly-found son and his family when they move to a new home near me. I am also dismayed in the best possible way by the people who have offered to help. So far, I haven't needed it, but the time will come when I will.

Small pleasures I've enjoyed for much of a lifetime have become even more precious. Letting hot water flow over my body in the shower for longer than I should. The way the morning sun shines through the living room windows. The murder of crows (or ravens or blackbirds; I don't the difference) who yell at each other in the parking lot here most days make laugh every time.

I smile and laugh at a lot more things now than I did before this happened.

On a much larger scale, I am spending time with the greatest mystery of humankind, the one we try to ignore for most of our lives: that we all die.

Although the sense of peace about dying along with the understanding I gained in my psilocybin session that death is sort of like the other side of life and not something to fear has stuck with me, my mind sometimes wanders to the idea of my no longer being here.

“I” live in this particular building. “My” stuff is gathered in this space. “I” move around, “I” talk to people, “I” go places, “I” have an impact on others as they do on me. Can that “I” just disappear?

As hard as I try, I cannot imagine a world without me. The morning after my psilocybin session, I asked my guide over breakfast if s/he can imagine the world without being in it.

The guide thought carefully about this for several minutes and said no, couldn't do it. And this is a person who has been using hallucinogens and guiding others through sessions with them for a couple of decades.

I have dark periods when I think about the day I die and sometimes the thought gets really stupid. Don't laugh, but if I choose to use Oregon's physician-assisted suicide law, I have wondered what I would wear that day. What clothes do I want to die in.

Do I want to be in bed or in a chair or lounging on the sofa? Oh, come on, Ronni. Where do these thoughts come from? It's usually on the couple of days that heavy fatigue kicks in after chemotherapy.

Even with all that, what I have noticed about myself in the three weeks since the psilocybin session is that the peacefulness I now have in relation to dying has extended to daily life.

It shows up in that old phrase about taking time to smell the roses. I feel like an idiot saying that but I've mostly been in a hurry all my life. I'm not anymore. I'm more comfortable day-to-day than I've felt in most of life and its not too much of a stretch to say that this space where I am now between life and death is among the happiest of my life.




Some Things I'm Finished With Forever

It's not just shopping, as I mentioned on Wednesday, that I can give up with this terminal cancer diagnosis. There are a bunch of other things I never need to think about again and I'm pleased as punch to let them go.

Back in early October my oncologist, the chief hematology nurse and a social worker gathered in a room to tell me that my two new cancers could not be cured but that certain chemotherapy might extend the amount of “healthy” life I would have before symptoms of the cancers begin to take over.

My first thought then was, “A-a-a-ll R-i-i-ight! I just went through my exercise routine for the last time ever this morning.”

For years and years, at least five days a week, I had hated every moment of every workout and I'm happy to be done with it.

Here are some of the other things I have ditched:

I don't need to worry about getting dementia anymore.

I can eat anything I want. In fact, that chief hematology nurse has impressed on me more than once that I need to keep my weight up to avoid frailty.

So I can eat all the high calorie, high fat food I want and in fact, she told me not to worry that it may be unhealthy, that the cancer will kill me long before the diet would.

No need to bother to learn the metric system now.

I can stop feeling guilty about not texting. It's just not my thing.

No more major dental work.

I can stop worrying that I am hopelessly behind in keeping up with new music and movies. I have no reason to care now.

Think of all the time that list frees up. If you've got any suggestions of what else I might give up, I'm eager to hear and will consider them all.