35 posts categorized "Cancer"

Cannabis and Chemo

When I mentioned last week that one of my physicians had recommended cannabis, especially the CBD part, to help me sleep through the night, we both laughed acknowledging that it still feels odd – even in a state where it is legal – to be discussing with a doctor how weed might improve my life.

Quite a few commenters on that post mentioned how they have been using versions of cannabis to treat a variety of ailments, especially pain, for a long time:

Reduce joint pain
Doubles sleep time
For pain
Aches and pains recede
Got me off opioids
Reduces lower back pain
Works for sleep

That was a week ago and you, dear readers, impressed me enough that I hied myself off to the closest cannabis dispensary, about five miles from my home.

One of the “bud tenders” behind the counter, who was obviously well informed and very helpful, listened carefully to my questions, then showed me a variety of edibles with CBD but also, at my request, others that combine both CBD and THC (I don't see any reason not to enjoy a nice, little high for awhile before sleep arrives).

My choice was a box of ten small chocolate candies each containing a hazelnut at the center that are half CBD, half THC. It was like the old-fashioned, illegal weed I smoked for most of my life in that what constitutes a dose is flexible from person to person. Some people need only one candy, the bud tender told me, others need two or, sometimes, three.

For me, he recommended trying two and then adjust up or down from there – which is what I did about an hour before I wanted to go to sleep.

Hallelujah – it is the first time I've slept more than two or three hours straight in a year or more – nearly seven hours this time. Since then I've used one candy and that works as well as the two on the first night.

So. Sleep problem solved. And unexpectedly, a second problem solved.

After the lab had analyzed the blood the nurse had drawn from me when I arrived for my weekly chemotherapy infusion last week, I was told that because the reading for one blood component was so low, I was at high risk for infection.

So, they said, I would have a week off – also from the oral chemo I take at home twice a day – and see if the reading improves enough next (this) week for the infusion.

Well, that's fairly alarming. During the surgery in June, some cancer cells were found in three lymph nodes in addition to the tumor that was removed from my pancreas. I doubt those cells or any others are disappearing on their own which is the reason for the chemotherapy.

When I asked if this – time off from chemo for awhile - is a common occurrence, the nurse did not sound encouraging, at least in my interpretation. “Sometimes,” she said. The treatment - that is, the kind of chemo drug - might be changed or reformulated.

Until now, my reports in these pages about the progression of my treatment have been upbeat because I've felt that way. Now that the effects of the surgery have healed, I have felt so healthy that sometimes I've half-assed wondered if maybe someone made a terrible mistake and I don't have pancreatic cancer.

Of course, that's stupid and I know it. It's just that I've been so pleasantly surprised to feel so normal.

But as I left the chemo clinic without having had my infusion, my mood was considerably darker. What if that blood test number doesn't increase enough for another treatment? What if there isn't a different treatment if I need that? What if they tell me there is nothing more to be done? And so on.

I hesitated before writing that paragraph. I seems so raw compared to how well everything else in this odyssey has worked out so far. These new thoughts cripple me particularly when I'm tired which is pretty much daily, especially from mid-afternoon onward.

This is the first news I've had about my condition that frightens me. Well, hold on. Let me restate that: stark, uncontrollable panic is a closer description to what I've been feeling and that is true even while understanding that I have no facts to back up my fear. Yet. But these thoughts above and worse go round and round in my head like ear worms especially when I'm tired.

Then, for an entirely different reason, I tried those little chocolate candies laced with cannabis and it's a bit of a miracle. They give me relief from the long, wide-awake hours when sleep had been impossible and in the morning, because I'm fully rested, I can beat back the frightful furies (until I wear out in the afternoon) that otherwise take over my brain with questions that are not answerable yet.

Serendipity is the only explanation - I tried something for one problem and it relieves a second one too. So thank you - those who commented about your experience with cannabis for medical and sleep problems. You encouraged me to do something I might have otherwise skipped past.

Also, a neighbor who has tried a variety of medical solutions for his back pain was impressed enough with your comments that he is going to try some cannabis to see if it will help him.

Meanwhile, in case any of you, dear readers, live somewhere with marijuana dispensaries but like me, have been hesitant to check them out – or you're just curious - here's a short video tour of the one I actually went to.

In maintaining this blog's position as an advertising-free zone on the internet, in no way do I mean this video as a promotion or endorsement for the shop which I chose for no reason than it is near home. The video turned up while I was looking for something else and it is a good representation of what appears to me to be a well-run store.


Things You Can Learn at the Chemo Clinic

When, on three Wednesdays out of four, I go to the Knight Cancer Institute at the Oregon Health & Science University (OHSU) for my weekly chemotherapy infusion, the view from my chair is this: (Photo credit: Kristian Foden-Vencil-OPB)

KnightCancer2l

On those days, I'm in the building to the right in this photo overlooking the construction project.

This new, state-of-the-art research facility exists thanks to Nike founder Phil Knight. In 2013, he and his wife pledged half a billion dollars to OHSU to fight cancer and to keep OHSU people like Brian Druker, the scientist who discovered the power of the cancer drug Gleevec, around to continue their research.

But, said Knight, he would do this only if OHSU could match the donation. Half a billion is a lot of money.

In what to me seems a lot like some kind of miracle, OHSU topped the goal. As the Kuni Foundation announced in July 2015:

"Gifts came in from all parts of the community, snowballing into an unstoppable movement against cancer...Children held craft sales and collected cans, sending in shoe boxes of change. Local businesses and labor unions [banded] together sending in funds. The state of Oregon agreed to invest $200 million in OHSU facilities needed to support the building expansion."

Twenty-two months later, with a $5 million donation from the Kuni Foundation, OHSU had met Phil Knight's challenge having raised a total of $508 million. Ground was broken for the new $160 million building in June 2016 and completion is scheduled for next summer.

I know this because doctors and nurses and others at the Knight Cancer Institute have told me the story and I'll get back to that in a moment. First, some smaller things I've learned there from the caregivers at OHSU.

WEIGHT LOSS
Following my Whipple procedure surgery for pancreatic cancer in June, I lost nearly 10 pounds. Well – I suppose some of that weight was half my pancreas, my entire gall bladder, all my duodenum and some smaller bits and pieces the surgeon removed. But most of it was a result of the surgery and recovery.

Plus – I hadn't known this before – cancer uses up more energy more quickly than a body without cancer. The same can be said for chemotherapy. A patient is expected to lose weight during treatment and therefore is encouraged to gain.

God knows I've worked at it. Before now, I spent a lifetime trying to keep off the same 10 or 15 pounds I repeatedly gained back. Even so, it was easier to lose that weight than to put it on this time.

Having at last reached my pre-surgery weight recently, I asked the RN at my chemo treatment last week if she could lay off the admonitions to gain more weight.

Apparently she thought I was kidding. She repeated the need to continue gaining to keep ahead of the chemo drugs' predilection to eat away at my weight.

WRINKLES
Unless one is very fat, wrinkles go hand-in-hand with growing old. I don't much mind them, especially since the cancer diagnosis: something like that strongly focuses one's attention on what is really important, and wrinkles are not.

Even so...

The wrinkles I've had until now came on slowly. A smile line. Increasing number of crinkles under my eyes. That sort of thing over time.

Since the surgery? Wow. I lost enough weight that overnight even my knees became wrinkled. My forearms are crepe-y. My belly is rippled with a long row of wrinkles. So is my butt. These are all new. (No, I'm not showing you photos.)

At the same time, however, it's weird that my waist is bigger than before. It bulges out and that brings me back to what the nurse told me.

Most of the weight I have gained is and will continue to be "unfortunately, fat," not muscle. That's just the way it is in this circumstance, she said.

My whole body has gone soft since I hadn't been able to work out for a long time following the surgery. I finally got back to my morning exercise routine two weeks ago and I'm determined to replace some of the lost muscle. We'll see, we'll see.

CANNABIS
I've been smoking weed since high school but not much in recent years because it makes me cough. The state of Oregon has allowed sale of medical marijuana for quite a while and about two years ago, they expanded to allow sale of recreational weed.

Still, as curious as I am about retail versus illegal sale, I haven't gotten around to visiting a dispensary yet. So at my chemo visit to OHSU last week, when I told the doctor that sleep is a sometime thing for me, instead of a prescription drug, I was surprised when he suggested cannabis, particularly CBD which is, apparently, the part of cannabis that, unlike THC, doesn't get you high.

"What fun is that?" I asked him and we both laughed at how strange it still sounds to hear weed recommended by a doctor.

He explained that CBD is an anti-inflammatory and has a calming effect too that could help me sleep.

Is it as weird to you as it is to me to hear a physician recommend weed? I know that Oregon doctors have issued medical marijuana cards to patients for many years but it still felt odd when it happened to me.

OHSU
Getting back to this, a couple of weeks ago, I posted a list of the many things that, even with a diagnosis as frightening as pancreatic cancer, I am grateful for. There is another I didn't mention then.

That I am being treated at the Knight Cancer Institute at OHSU. My surgeon is one of the world's leading pancreatic cancer researchers and now, with Phil Knight's donation, he is assured of continued resources.

As Nature reported, Brian Druker, who is now director of the Knight Cancer Institute,

"...aims to rapidly hire up to 30 principal investigators, and to provide researchers with a funding cushion intended to free them from the burden of constantly applying for grants...

"The institute will focus on detecting cancers early in their development, when treatments generally have a better chance of success. Druker also wants the institute to take advantage of emerging technologies to develop better tests that would reduce false diagnoses."

Just last week, the Institute hired

"Dr. Gordon B. Mills to lead precision oncology for the hospital. He will be charged with working with his team to try to figure out what combination of drugs is most effective on different kinds of tumors. And he told KXL that he can’t wait to get started in Portland, 'The opportunity to do this at a center that is innovative, flexible, and is really wanting to make a difference, is the reason why I came to Portland.'"

Toward the end of last year, the first time I visited a doctor at OHSU, I felt a sense of pride and dedication from every person I dealt with that wasn't present or, at least, not as apparent with other physicians I've known as it is at OHSU.

I can't help but think all that energy comes from knowing they are part of something big, something special they have been part of creating and know that it took so many other people who believed it them and their goals to donate all that money to make this new research facility possible.

It also helps explain why from the start all these people have made me feel safe in their hands.


Contest Winners and Cancer Update

SOCIAL SILVER SURFERS EBOOK WINNERS

EBook_SocialSilverSurfers2016-web150On Friday, I wrote about a new eBook reporting on a survey about how elders use the internet. One of the authors, Erin Read who is a friend of mine, offered to give away three copies to TGB readers.

Now, with the aid of a random number generator, we have the online names of the three winners:

Janet
Gloria MacKay
Cynthia Friedlob

Congratulations all. I have forwarded your email addresses to Erin who will contact you to arrange delivery of the eBooks.

Erin tells me that part of her company's mission is to support those who work to enhance the quality of elders' lives so she will also send a free copy of the eBook to Anita Franzione who teaches a public health and aging class and to Judith Levkoe of Seniors Across Canada both of whom entered the giveaway.

Those email addresses have also been sent to Erin who will be in contact with you soon.

That was fun and it generated a lot of conversation too. I'll see if I can find another good book to do this with soon.

CHEMOTHERAPY UPDATE
My friend Jan Adams, who blogs at Where is the Way Forward, has been walking the Camino de Santiago while visiting Spain this summer. She took the time to email this photo of a purple awareness ribbon at the Ministry of Health building in Madrid.

Purple ribbonMadridJan680

”I have been unable to confirm that this display of the purple ribbon on the Ministry of Health was really about pancreatic cancer,” she writes, “but as soon as I saw it, I wanted to capture it for you.”

And I'm thrilled to have it even if we don't know if it is meant to be for pancreatic cancer. That's because there seem to be more diseases than colors to go around and you can see the long list of them that use a purple awareness ribbon here.

Jan's photo gives me an excuse to update you, dear readers, who have emailed or left comments asking how I'm doing. I haven't written much about my cancer treatment lately because there is so little to say – which is, of course, good news.

I began chemotherapy infusions on Wednesday 13 September, repeated on each of the two subsequent Wednesdays. Also on those days and every other day of the week, I take two tablets in the morning and again in the evening of an oral chemo drug. This is my week off from infusion treatment, then I start another round of once a week for three weeks while continuing the daily oral chemo.

Did I mention how gruesome a few of the potential side effects can be? How about the dangers of infection due to a drop in the number of my red and white blood cells and platelets from the chemo? And other possible signs and symptoms that can even require an emergency room visit?

Many of you who have commented here about your cancer treatments are way ahead of me in knowing all about this stuff. Me? I'm still new at it, still learning.

But as I enter the third calendar week today of my six-month chemo treatment, I am – knock wood, cross fingers, light candles, etc. - side effect free. Whoo-eee! In fact, I have been feeling so good in general that sometimes I wonder how that can coexist with such a virulent cancer.

The hard part is how busy the chemo team keeps me even when I'm at home. I have pills timed 30 minutes before meals, with meals, 30 minutes after meals, some in the morning, some in the evening and one to take before every meal or snack I eat for the rest of my life along with two or three others I will need daily for as long as I live.

Here is a photo of what is, apparently, a permanent new feature of my kitchen:

MedicationTray

Also, there is lotion for my hands and feet throughout the day, mouth rinses, exercises to keep up my strength and those six meals a day. I haven't been able to do six, but I can usually manage four and sometimes five.

Don't even ask about the food restrictions. I'm experimenting carefully and have been able to add a few “new” foods but mostly, for the time being, meals are boring and repetitive.

But guess what? I'll take it. I'll take it all (with some whining) because compared to what others in my condition go through, I'm getting off easy.

GRATITUDE
Given how dangerous and aggressive this cancer is, I know how lucky I am, and my gratitude grows by the day. Here is partial a list of why:

Only ten percent of people diagnosed pancreatic cancer are eligible for the Whipple surgery which is pretty much the only thing that can help. I am one of those few.

Although it seemed to take forever, I healed relatively easily from the surgery and have been back to full physicial capacity for well more than a month.

My chemo treatment takes only an hour once a week. Some at the clinic sit there with an infusion going for eight or ten hours and/or do it several times a week.

So far side effects from the chemicals have passed me by.

I am old enough for Medicare which pays for all but a small amount of this expensive treatment.

I happen to live where there is a world-class cancer institute with renowned physicians, nurses and other healthcare professionals highly experienced in my kind of cancer.

And I have you, dear readers of this blog, who send greetings of good cheer and hugs and light candles and wish me well every day.

What makes me even more grateful in that regard is I'm not even all that likeable. Among other failings, I am short-tempered, cynical, cantankerous, impatient, judgmental and more.

Thank you all so very much for being on this journey with me.


Crabby Old Lady Writes About Her Cancer

Handwriting

You've read it here more than once – that Crabby Old Lady never wanted to become a professional patient, and in the time following her diagnosis of pancreatic cancer in June, she has fought against it mightily.

Well, phooey. It has been a futile effort from the get-go that Crabby should have known better than to try. This isn't a broken bone that will heal in a few weeks or a new knee.

So today we have another chapter in Crabby Old Lady's attempts to adjust to her new situation in life. Some in the news business would call it a thumbsucker but Crabby, as always, is helpless against E.M. Forster's dictum, “how do I know what I think until I see what I say”.

Don't take any of this too seriously yet. Some (many? a lot?) of these thoughts, complaints and feelings are new to Crabby and therefore, by definition, half-baked. No doubt there will be revisions.

In the three months since those terrifying words, pancreatic cancer, were said out loud, Crabby is only gradually realizing how much her life will be permanently different. It is much more than she expected or wanted.

Crabby will spare you the lists and just say the nuts and bolts of living with this disease and the results of the surgery average out to a couple of hours a day, every day – hours for which she had other plans. Certainly she has seen more doctors more frequently than all such previous encounters combined.

Six months of weekly chemotherapy begin a week from today and for the past 10 days or so Crabby been buried in reading matter about all the awful things it might do to her, how she can help prevent some of them and which of those side effects are medical emergencies to be addressed immediately.

Elsewhere, Crabby's life is now controlled by lists of what she can and can't eat, keeping medications straight, phone numbers she might need and more.

This stuff is exactly what she never wanted in life. But here's the thing: for all these years of studying ageing, being as healthy as she was until now, Crabby never really “got” what most old people live with. According to Kaiser Health News,

”The majority of adults 65 and over have multiple chronic conditions that contribute to frailty and disability, according to a 2013-14 report from the Centers for Disease Control and Prevention [pdf].

“The percentage of chronic conditions among people 65 and over has increased over time, too. The percentage of people reporting hypertension, asthma, cancer and diabetes was higher in 2013-14 than in 1997-98, reports the CDC...

“About 57 percent of women and 55 percent of men age 65 and up reported hypertension. Another 54 percent of women and 43 percent of men reported arthritis.”

Obviously, Crabby Old Lady was lucky for the first 76 years of her life and she never fully appreciated how much time chronic diseases and conditions steal from elders' lives nor the personal effort required day in and day out to maintain as much health and well-being as possible.

Having spent a great deal of time thinking over all this, Crabby has come up with a few new words to live by:

Get over being a professional patient. It is what you are now. Live with it.

Accept the changes the disease is placing on daily life. They are your new normal.

Focus on what is possible now, not how life was before.

Crabby suspects that many of you, dear readers, have already been there, done this and Crabby Old Lady is just now catching up with you.


Chemotherapy School

One day last week, I spent an hour and a half at chemotherapy school, given at the OHSU (Oregon Health & Science University) clinic where my chemo will be administered.

They handed out a large Powerpoint deck at the class and I already been given a giant binder the week before with pages and pages and pages of lists and commentary on what to expect, what to do and other instructions to follow during chemo treatments.

ChemoBinder

Huh? Why didn't you guys who've been through this (and according to your comments here, there are quite a few of you) tell me that chemo is a full time, 24/7 job for the next six months?

Until now, I thought it would make me tired and maybe sick for a couple of days after each treatment. But oh no. All kinds of terrible things can go wrong and there are a dozen or more preventive measures plus a lengthy list of side effects a few of which require immediate emergency attention.

For that last item, they prepared a page to post on the refrigerator door for easy reference. Oy. I had no idea.

RefrigeratorList

Of course, these are generalized documents meant for all chemotherapy patients and which side effects an individual is subject to varies with the chemo formula. Some people escape with none or hardly any difficulties. Nevertheless, it is daunting. Among the possibilities:

Decreased blood clotting ability
Irritation of the entire gastrointestinal tract
Nausea and vomiting
Constipation or diarrhea
Neuropathy
Chemobrain
And my personal favorite (that's snark, folks), Hand-foot syndrome

That's when the soles of your feet and the palms of your hands become red, can crack and develop blisters. The prevention, they tell me is to take tepid, not hot baths and showers, and to wash dishes in tepid water.

That goes with the admonition that chemo compromises the patient's immune system so to avoid infection, one must wash, wash, wash hands constantly.

All that washing, of course, exacerbates hand-foot syndrome so there is a specific kind of lotion to gently rub on hands and feet several times a day. I can't wait – recall what I said above about chemo being a 24/7 job.

All right, I know I'm whining and I shouldn't. For someone with one of the scariest of cancers, I'm incredibly lucky. I am among the only ten percent of pancreatic cancer patients eligible for the Whipple surgery I had.

And now that I am facing chemotherapy soon, they tell me my “dose” will take about an hour to administer. Some people need six or eight hours each time. I am so grateful for these two pieces of luck.

Plus, all these and many more additional instructions, warnings and admonitions come with the care and concern of the medical staff based on their collective years of experience with chemotherapy patients in one of the best cancer centers in the United States.

But still, you could have mentioned this stuff to me. Okay, I'll shut up now.


Notes on Coping with Cancer

You, dear readers - in your generosity in commending my attitude toward this cancer and my “honesty” in writing about it - have given me a lot to think about.

The thing is, however, I don't know what else I could do differently. Not that I want to make it the central experience of my life, but cancer will not be ignored so one might as well pay attention.

Plus, it is mostly a disease of age so it makes sense, at a blog about “what it's really like to get old”, to include a first-person account.

Every cancer is individual to the patient but I'm trying to - well, what? Lift the veil? Talk about the reality of my experience and let it inform people as they see fit? Or not? Maybe something like that.

Cancer is a devastating event that upends not just the life of the patient, but his or her family and friends too. It is a word so fraught that in yours and my young adult years, you might recall, it was rarely mentioned by name – or only whispered.

What I have discovered, however, is that even though having cancer can be time consuming, you do go on living your regular life – or mostly so.

After surgery recovery, when not engaged with the disease via testing, seeing doctors, organizing the prescription drugs, reading and marking up the book-size binders they give you to study for chemo, you clean house, do the laundry, shop and cook, play with the cat, see friends and neighbors, read books, watch TV, write a blog post.

That was before and then there is now and sometimes, for me, there is not a lot of difference.

As my primary care physician keeps telling me, "You're very healthy, Ronni, except for the cancer" and except for some occasional minor pain, I feel that way most of the time so that I wonder if I'm not taking this seriously enough.

Except, I haven't been able to imagine what that means or what I would do if I WERE taking it more seriously.

Reader Ian Bertram left a message on Facebook a few days ago:

”Your attitude to this is the best – everything is new so treat it as a learning experience.”

In a comment on a post here last week, Joseph Pearce left this note:

“What an amazing journey this life is!!”

[EDITORIAL NOTE: Dozens of you last week, complimented my new hair style in a photograph I posted. Joseph Pearce, who owns the salon Hair Architects in Portland, Oregon, is the stylist reSponsible for it.]

I was intrigued by Joseph's comment and we discussed it further last week at lunch one day. Joseph – who was diagnosed with leukemia six or so years ago – sees our predicaments similarly to Ian, as an adventure and maybe I'm flattering myself but I am pretty sure I was heading in that direction in my own thinking when Joseph (and Ian) clarified my thinking.

In the three months since my diagnosis, it has never been about “fighting cancer” or “beating cancer” for me. Not that I don't want to survive this but I don't know how to do those things.

KnightCancer

With many years of schooling and more of clinical experience, it is the doctors – not I – who are qualified to do the fighting. They are the experts and I defer to their judgment in all but the smallest matters.

The treatments – surgery and chemotherapy – will or won't succeed but like Michel de Montaigne, the 16th century essayist I mentioned last week, I believe that chance and caprice rule our lives so I cede control to, in relation to the cancer, the doctors, and otherwise to the universe.

Meanwhile I am fascinated with the cancer itself, the treatment and how cancer is changing me.

How can one not change when the circumstances of life do. We expect marriage, divorce, parenthood, death of a loved one, losing a job, retirement, etc., to change us so certainly a life-threatening disease also does.

With great kindness, many of you have indicated how that these cancer posts are valuable to you. But believe me, I do not feel brave or inspiring or gutsy or amazing.

What I do feel is deeply curious about this unexpected turn my life journey has taken. It's still new to me but I am trying mightily not to make it my whole life while paying close attention too.

Montaigne again from Sarah Bakewell's book about him, How to Live, which, Bakewell says, is the closest Montaigne came to a final or best answer on the question about how to live:

”Life should be an aim unto itself, a purpose unto itself.”

(Sorry about all the Montaigne lately; it's just that I'm currently caught up in the Essays themselves again along with Bakewell's excellent book about them.)


INTERESTING STUFF – 26 August 2017

THE GREAT SOLAR ECLIPSE OF 2017

It's all over now but let's have one more go at the 2017 total solar eclipse. This video was shot from the shores of Palisades Reservoir, Idaho:

A COMIC ABOUT GROWING OLD

By comic strip artist Dan Dougherty, this series features a dad and his daughter growing up and beyond.It is charming. A sample:

GrowingOldComic1

GrowingOldComic2

GrowingOldComic3

Visit Bored Panda for the entire strip and keep scrolling for the full effect.

ENGLAND'S POISON GARDEN

I've seen this video before and can't recall if I've posted it so, what the hell. Maybe it's the second time around. Here's the intro from the YouTube page:

”Locked behind black steel doors in Northumberland, England, the Poison Garden at Alnwick Castle grows around 100 infamous killers. From deadly nightshade to hemlock, the only way a plant can take root in this garden is if it is lethal to humans.

“Created by the Duchess of Northumberland, this is one garden where you won't want to stop and smell the flowers.”

THE SECRET OF LIFE

Although I've been reading the 16th century essayist, Michel de Montaigne for as long as I can remember now, I have discovered a marvelous companion volume I'm reading now.

In How to Live or A Life of Montaigne, Author Sarah Bakewell makes strides toward answering that universal question about how to live based on her years-long study of Montaigne's essays.

Montaigne isn't the only person to discover that paying attention to the present moment is the secret to a good life; he's just the first (if you don't count the ancients he studied).

Here is Alan Watts take on the same issue:

ALPHORN PLAYERS COMPETITION

I didn't even know there was such a thing as a alphorn, let alone an international competition. Here's what the YouTube page tells us:

”The Valais Drink Pure Festival in Nendaz, Switzerland, is an international meeting of alphorn players where the best of the best come to play the iconic elongated horn in its traditional Swiss setting.

“While 16-year-old Tim Lin might seem like an unlikely alphorn enthusiast, he is quite the prodigy. Born in Germany to a Chinese father and a Belarusian mother, Lin took home last year’s top prize in the youth category, and hopes to do it again this year.”

WHAT TRUMP HAS UNDONE

Although President Trump has no legislative accomplishments to brag about, he frequently insists that he has surpassed all previous presidents' accomplishments in his first six months. It is simply not true:

What Trump HAS done, however, is reverse a lot of important rules, tools and policies and it can make you cry. Washington Post reporter Philip Bump has compiled a comprehensive list of them. Here are a few of the most terrible:

⚫ Withdrew from the Trans-Pacific Partnership

⚫ Repeal of a rule allowing states to create retirement savings plans for private-sector workers

⚫ Withdrew from the Paris climate agreement

⚫ Blocked the Clean Power Plan

⚫ Ended a study on the health effects of mountaintop-removal mining

⚫ Reversed an Obama ban on drilling for oil in the Arctic

⚫ Rescinded a limit on the number of sea animals that can be trapped or killed in fishing nets

⚫ Ended a rule banning dumping waste from mining into streams

⚫ Removed a bike-sharing station at the White House

⚫ Withdrew federal protections for transgender students in schools

There are many more that will break your heart and even if we could stop Trump now, it would be years before we could restore these important policies. Read the entire list here.

THE BRITISH POLITENESS POLICE

These are the Burlington Beadles which YouTube tells us is “possibly the oldest and smallest private police force in the world.”

”For nearly 200 years, the beadles have stood guard over one of London’s most exclusive shopping centers, preventing shoppers from committing brash acts of rudeness—such as whistling, singing and hurrying.

“Dressed in period clothing, head beadle Mark Lord still makes sure that people mind their manners in this most (proper) English way.”

SMALLEST TOWNS IN THE U.S

Mental Floss has compiled a list of the smallest town in each one of the 50 American states. A surprising number of them boast states with just one resident.

In my state, Oregon, the smallest town, with a population of two, is Greenhorn which also has the distinction of being at the highest city at 6,306 feet.

Greenhorn oregon sign

The town was founded during the gold rush and today

”...serves as a vacation retreat and hunting outpost for a handful of part-time residents. Two people, Joyce Pappel and Ron Bergstrom, account for the town’s entire permanent population. Greenhorn collects no taxes and has no sewers, power lines, or police.”

You can look up the smallest town in your state at Mental Floss.

FAINTING GOATS

Have you ever heard of these? Fainting goats? I never had until a house guest, my friend Jim Stone, showed me a couple of videos. Here's another video about them from National Geographic. They make me laugh every time.

* * *

Interesting Stuff is a weekly listing of short takes and links to web items that have caught my attention; some related to aging and some not, some useful and others just for fun.

You are all encouraged to submit items for inclusion. Just click “Contact” at the top of any Time Goes By page to send them. I'm sorry that I won't have time to acknowledge receipt and there is no guarantee of publication. But when I do include them, you will be credited and I will link to your blog IF you include the name of the blog and its URL.


Being a Professional Patient

As I have mentioned once or twice since my pancreatic cancer diagnosis, I have always said I never wanted to become a professional patient. Nevertheless, here I am doing just that and there is a surprise: some aspects are quite pleasurable.

One of those is visits to the hospital.

On Tuesday, in preparation for my upcoming six months of chemotherapy, I underwent a short, minor surgical procedure to implant a port, sometimes called a port-a-cath, under the skin of my upper chest through which the chemo medications will be administered.

RonniChemoPort2

(It's hard to tell in this photograph, but the port raises the skin about a quarter of an inch. I have no idea what that bruised area on my neck is although it is related to the placement of the port.)

The surgeon who performed my Whipple procedure in June was there on Tuesday to lead the team and I was glad to see him; I feel safe in his hands.

In addition, even though the nurses, CNAs, two anesthesiologists and other caregivers who looked after me were not the same people who did so in June, they were equally patient, kind, caring, knowledgeable and expert at their jobs.

Each one carefully explained the parts of the procedure that were in their bailiwick, answered all my questions in layman's language I could understand and in a situation where just about any patient would be apprehensive, even frightened, their manner made it seem almost like we were just having a friendly visit. As it was the day after the eclipse, we shared our stories about that in between the medical information.

Given the ambience they created, if it hadn't been 6AM I might have expected drinks to be served.

With this diagnosis, I entered a world almost as different from my life's experience as landing on another planet would be. It is fascinating, if you pay attention, in a way that is similar to reading Studs Terkel's book, Working, from years ago for which he interviewed many dozens of people about what their jobs were like.

A hospital is a self-contained universe expressly designed to give aid and comfort to people whose bodies have betrayed them in some manner. The people who work in that domain have their own language, their own tools, rules, rituals, practices, customs, protocols and codes of conduct.

And when you – the patient – are lucid enough, you get an intriguing peak into this alien environment. Safety is, as you would imagine, paramount. About nine or ten people came to talk with me in the curtained pre-op room on Tuesday. Every one of them first asked me to repeat my full name and birth date which they checked against my computer record.

Undoubtedly that is to ensure they don't amputate the wrong leg, as it were.

I am impressed that although my legal name, listed on all my records and documents is Veronica, they had taken the time to determine that I prefer to be called Ronni – also in my records – and not one ever missed that nicety.

Each one, too, is careful never to overstate the bounds of his or her area of expertise. When I asked an RN if it would be possible to insert the port on the left side of my chest, she deferred to the surgeon – it was his call, not hers.

When a couple of physicians were explaining the release I needed to sign, a group of nurses just outside my room were having a coffee klatch and getting quite loud. The doctors stopped our discussion, went out to quiet the nurses and when they returned, started from the top to be sure I knew what I was signing.

Some hospital personnel apparently have prodigious memories. As I was wheeled toward the operating room, the woman at the desk where I had checked in an hour earlier waved and said with a big smile, “See you when you get back here, Ronni.”

How many people had she checked in that morning? And she remembered my name?

All this accommodation is to the good and is a result of the relatively new doctrine of “patient-centered care”, a concept physicians' offices, clinics and hospitals have been developing over the last decade or so. Quite successfully as far as “my hospital” is concerned.

So if I must become a professional patient, I'm having a fine ol' time investigating hospital culture.

In that regard, here's a nugget of information worth knowing: at this hospital, operating rooms are numbered 1 through 25 but there is no number 13. Even in a place where cutting edge medicine is practiced every day, superstition remains.


Random Cancer Thoughts

Pancreaticcancerawareness160left
Several people have mentioned via email and in comments in these pages on their own experiences with cancer, that theirs is a small thing compared to my pancreatic cancer.

Are you guys kidding? It says something about the state of the science in regard to almost all cancers that it is just about the scariest diagnosis anyone can get. Not that there aren't other diseases of age that are equally fraught but we are culturally conditioned to more or less freak out when cancer is mentioned.

I recall thinking when I was quite young, in my twenties I suppose, that I wouldn't need to worry about cancer because it mostly affects old people and by the time I got there, surely science would have learned how to prevent or cure it.

Yes. Well. It didn't work out that way. But I wonder if people of our age expected it to have been so because science was so successful in the 20th century creating vaccines for most of the diseases of childhood: measles, mumps, chicken pox, small pox, diphtheria, whooping cough, polio, etc.

That happened in our lifetimes and is an astonishing achievement – moreso for those of us old enough to remember quarantine signs on homes of neighbors afflicted with one of those diseases before the vaccine was created.

4-early-20th-century-quarantine-sign-everett

My point, however, is that no one's life-threatening disease is better or worse than another person's. Besides the disease and the (sometimes awful) treatment, we bring our personal histories to these frightening events, our hopes and fears, our spiritual beliefs or lack thereof.

All these and more affect how we face frightening events which therefore cannot, nor should not be compared one to another.

CHEMOTHERAPY AND SOCIAL WORKERS
A social worker connected with the clinic where I will receive my chemotherapy treatments telephoned to discuss what her department can do for me.

She said that they are there to help with just about any practical or emotional issues that come up – that over the years, they have seen pretty much everything from something as simple (to them) as arranging transportation to prescriptions, often anti-anxiety medications.

Until she mentioned that last item, I hadn't realized how important it is to me to feel what I feel and how adamant I am about it.

As I mentioned last week, I have good days and bad days but I see both as learning opportunities and it has been my experience throughout my life that almost always the bad times, painful as they can be, are more enlightening than good times, as enjoyable and important as the latter kind are.

POST-WHIPPLE PROCEDURE DIET
Healthy eating is deeply embedded in my daily life. Not that I don't indulge in ice cream now and then but generally, I eat mounds of vegetables and fruit along with fish, seafood and very occasionally, lamb – my favorite of the red meats; I don't miss the others.

Then, along came the Whipple Procedure during which they removed a good portion of my pancreas. Since then, my pancreas does not create enough of the enzymes that are required to digest food properly and I must take a pill to replace those enzymes with every meal.

As it turns out, that's the easy part.

Almost all vegetables – at least for the time being – are verboten for their high fiber content. I'm making sandwiches with white bread now, no whole grains allowed.

I'd been worried about the lack of green things in my diet until I discovered that certain lettuces, cucumbers and zucchini among a few others are low fiber although I need to peel the latter two to keep the fiber content as low as possible.

Most fruit is okay as long as they are peeled too, except, as a nurse noted to me, for grapes and cherries (in high season now and at their best) should be avoided because they are damned hard to peel.

Protein is important so that foods I ate sparingly in the past because of their high calorie count are now essential: peanut butter, cheeses, pasta – but the white kind, not whole grain.

A danger with cancer and the Whipple is weight loss so I am also encouraged to eat anything that is high in calories – ice cream is no longer a no-no but here's the rub: I'm hardly ever hungry and have to force feed every meal. By the time I get to dessert, two or three spoons of ice cream is all I can handle. (This from a woman who, until two months ago, believed a serving of ice cream is a pint.)

There is more but you get the idea.

My entire way of eating has been upended. It is more important right now to allow foods high in calories and avoid those that are hard to digest. I'm still learning how to cook this new way and have not ventured out to a restaurant yet.


My Introduction to Chemotherapy

Pancreaticcancerawareness160leftWhat interesting, useful and fruitful discussions you - TGB readers - have been carrying on in the comments of posts about my pancreatic cancer. Some of you have been-there-done-that with a variety of cancers and I appreciate your generosity in sharing your experiences – it enriches our understanding.

On Wednesday, I met with the medical oncologist and her team to talk about my upcoming chemo. I had been dreading the meeting since it was booked a few weeks ago.

Despite what you think from my written reports here, my upbeat, optimistic days run parallel with dark, pessimistic, even frightening ones that include horrible images that appear unbidden as I am falling asleep at night or for an afternoon nap.

My mood worsened in the days leading up to Wednesday's meeting with memories of how chemo sickened my father and wasted his body 35 years ago, which I tried to counter with the success my friend Joyce Wadler had with chemo through three different cancers.

It didn't help much and even though I told myself that there was no point in having gone through the terrible recovery period from the Whipple procedure surgery and not follow up with the recommended chemo was just stupid, my gloom persisted.

“Stupid” is the word since, as the experts keep telling me, I am in better shape to beat this cancer than 90-plus percent of patients. To recap:

Because most pancreatic cancer is detected after it has spread, only ten percent of people diagnosed are eligible for the surgery.

The portion of my pancreas that was removed, including the tumor, was “clean at the margins” meaning it has not spread from that organ.

In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; three were positive.

Eighty percent of patients in my circumstance who take the chemotherapy are dead from the disease in five or fewer years.

And you wonder why I'm sometimes morose about this?

On the other hand, there is what my primary care physician said when I saw him a couple of weeks ago: “Ronni, you are very healthy - except for the cancer.” Maybe that is what made the medical oncologist on Wednesday more upbeat about my chemo outcome than some others: that it will be “curative” which means, like many other cancers, it is considered cured if the patient is cancer-free in five years.

To know that, there will need to be regular checkups, tests and scans to monitor the cancer (or – best case scenario – lack thereof) which, of course, leaves me with the life I have always wanted to avoid: being a professional patient.

But what other choice is there? So in mid-September I will begin chemotherapy with two drugs – one intravenous weekly through a port permanently embedded (for the duration) in my chest, and the second drug taken orally twice a day every day, each for three weeks in a row, then a week off before starting again.

For six months this goes on which will take me to March 2018. There are, of course, potential side effects – fatigue, various kinds of sores, peeling and cracking skin but not, in my case, hair loss, or not much they say.

With the intravenous drug alone, 55-60 percent of patients are alive after three years, the medical oncologist tells me. When the second, oral drug, which is relatively new, is included that number is increased by 15-plus percent.

That's the good news. The bad news is that the cancer might come back, usually in the liver or lungs and there is little treatment then.

Those of you who have discussed your chemotherapy in the comments undoubtedly know all about this with whatever differences apply to your kind of cancer.

To me, this is all new and in my gloom, I sometimes lean toward agreeing with those people who renounce these “poisons” in favor of herbs and other “natural” treatments.

My more rational self knows perfectly well that if flax seeds cured cancer we would have heard about it and they would cost $5000 an ounce.

Like me, you have probably noticed through the years, that people are remarkably adaptable to difficult even, sometimes, severe circumstances and once I get started with this new weekly routine in mid-September, I'm sure it won't feel as burdensome as it does now.

* * *

ABOUT THE PURPLE RIBBON: For readers who have commented or emailed objections to my use of the pancreatic cancer purple ribbon, I ask you to consider this advice Albus Dumbledore gives to Harry Potter in Harry Potter and the Philosopher's Stone, with which I heartily agree and applies to symbols as well as words:

"Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself."


What Others Say About Death

Virgildeathquote

Compared to how I felt in the first couple of weeks following surgery (which was awful), I am more than pleased with how my recovery is going. However, about once a week, I have a bad night without a wink of sleep.

That happened to me Monday and today (Tuesday as I write this for Wednesday), I'm left with a brain too low-functioning to tackle anything that requires much thought or organization. So I'll let others do the speaking.

A cancer diagnosis certainly does focus the mind on the far end of life and I have been checking out what some people – ancient and modern, well-known and not – have had to say about it. Here are a few I have enjoyed pondering:

“We cannot banish dangers, but we can banish fears. We must not demean life by standing in awe of death.” – David Sarnoff
”Death is more universal than life; everyone dies but not everyone lives.” - Andrew Sachs
“Don’t cry because it’s over. Smile because it happened.” – Theodore Geisel (Dr Seuss)
“A dying man needs to die, as a sleepy man needs to sleep, and there comes a time when it is wrong, as well as useless, to resist.” – Stewart Alsop
”No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life.

"It is Life's change agent. It clears out the old to make way for the new.” - Steve Jobs (who died of pancreatic cancer in 2011, eight years after diagnosis)
”To fear death, my friends, is only to think ourselves wise, without being wise: for it is to think that we know what we do not know. For anything that men can tell, death may be the greatest good that can happen to them: but they fear it as if they knew quite well that it was the greatest of evils. And what is this but that shameful ignorance of thinking that we know what we do not know?” - Socrates
”Life does not cease to be funny when people die any more than it ceases to be serious when people laugh.” - George Bernard Shaw
“Now he has departed from this strange world a little ahead of me. That signifies nothing. For us believing physicists the distinction between past, present, and future is only a stubbornly persistent illusion.” – Albert Einstein
“I’ll bet in Heaven they have one single word that means ‘back when I was alive’. You know, to save time in meetings and stuff.” – Derek Littlefield

What about you? Do any of these speak to you? Do you have any you want to share with us?


Living on the Edge of Life

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

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

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

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

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

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

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

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

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

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

The possibilities for my future are simple and obvious:

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

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

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

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

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

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

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

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

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


A Reverse Bucket List

Not many people with pancreatic cancer survive for long. As a reminder, here is how I explained my condition after surgery:

”The tumor was determined to be 'clean at the margins' - that is, cancer had not escaped the pancreas.

”In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; two were positive. Here is what that means for me.

”There are types of chemotherapy to treat this cancer and I will meet with a medical oncologist about that sometime in the next month or two. According to my surgeon and his team, a few people respond to this treatment and live up to ten more years.

”Sounds good except that 80 percent in my circumstance who take this treatment are dead from the disease in five or fewer years. Numbers may vary from other sources but not enough to talk about.”

Yes, as some TGB readers have noted, statistics are not destiny, but they can't be ignored and further, they can certainly be used as one kind of guide when life throws up such a devastating bump in the road as this.

For now, a month since surgery, I am seeing small improvements in daily life. I'm generally pain free now, am finally catching on to how I need to eat for the foreseeable future and I've learned not to scrimp on rest. The smallest exertions still deplete me of energy so I nap a lot.

The many rest and sleep periods have given me plenty of time consider what I want to do with the time remaining to me – whether a year or two or a decade.

I don't have anywhere near a complete answer, but I do have this: a strong suggestion of one's shortened mortality makes it easy to ditch projects you were not all that interested in to begin with while shedding guilt about not keeping up with the zeitgeist.

Most of what I have so far added to my list to ignore relate to technology.

ITEM: I have now absolved myself of learning to text. It's too hard to hit those itty-bitty letters on my phone and in general, I don't have anything to say in what's meant to be a short format. “Hi there – thinking of you” doesn't strike me as meaningful communication.

ITEM: Given the extraordinary number of videos, news reports, promotions, reviews, actor interviews and more, it is clear that Game of Thrones has become a cultural icon of enormous proportions, something anyone who pretends to knowledge of American pop culture must be familiar with.

Although I have deduced that GoT is a television program (are there books too?), I have zero knowledge of what makes it noteworthy and now I don't have to try to figure it out.

ITEM: “They” are now at it again, telling us in recent months that virtual reality and augmented reality are the next big thing. (I suppose that's why Google Glass failed so spectacularly and was pulled from the market two years ago.) This new iteration has yet to materialize and I'm ignoring it – happy to go to my grave steeped in the real world.

ITEM: And I've stopped feeling guilty about my deficiencies – based on dislike – in Facebook and Twitter. Yes, I know that a billion people on earth use FB. That doesn't mean I must and I use it minimally to accommodate readers of this blog. Beyond that, I'm done with thinking I really should put my mind to mastering it.

As for Twitter, there is nothing I have to say in 140 characters or fewer that is worth anyone's time. And I have blacklisted Twitter's daily emails telling me how to “get more people to pay attention to me.” That wasn't a goal in my life before my diagnosis and certainly not now.

It feels great to free myself of these “shoulds” and they are just the tech-related items. I've also made peace, for example, with the idea that I am unlikely to re-read all of Shakespeare before I die. And I have a tentative list of other items I'm considering adding to what I now think of as my reverse bucket list.

How about you?


Focus and Concentration Deficiency

It's really annoying. Since my surgery four weeks ago, I've lost focus. I can't concentrate long enough to get through an average news article or sift through a simple Google search results page and certainly not a book chapter.

Sometimes, when I read a sentence, there is a delay before I understand it. Not much; I've been describing it as the length of a slow finger-snap – just enough time so that the slippage is obvious to me.

When that happens with each sentence in succession, concentration drifts away and meaning is lost.

As it turns out, there is a name for this phenomenon as it occurs after general anesthesia. It's called Post-Operative Cognitive Disorder (POCD). TGB reader Linda commented about it here on 7 July.

She quotes from the American Society of Anesthesiologists:

"Confusion when waking up from surgery is common, but for some people – particularly those who are older – confusion can last for days or weeks..."

It's not exactly confusion for me. In fact, I never doubted that the gazillion bugs I saw crawling up the walls of my hospital room for a day or two following surgery were anything but hallucinations.

However, some other changes Linda tracked down that affect the process of cognition definitely apply to me:

”Cognition is defined as the mental process of knowing, including aspects such as awareness, perception, reasoning, and judgment. Typical complaints of those people reporting POCD are:

Easily tired

Inability to concentrate. For example, they cannot concentrate sufficiently to read a book or newspaper

Memory dysfunction. For example, they have a reduced ability to remember things recently said or done

Reduced ability to perform arithmetic. For example, they make mistakes with normal money transactions while shopping.”

I'm doing fine with arithmetic but the first three are definitely present in my life although I'm heartened to learn they are temporary. Meanwhile, I'm mostly annoyed by it but it does make napping and resting easier than it would be if I were eager to be reading.

ASIDE: Perhaps you have noticed in these blog posts since the surgery that they are all generated from my head alone - no research, no outside links, no facts and figures. That's unlikely to change until my brain fog (POCD) clears.

It is experience rather than reading and research that is making this months-long recovery period a sharp learning curve for me, and I expect there to be more of it.

For all the many years I've been studying ageing, I see now that I have never fully appreciated the difficulties old people face whether from a bodily assault such as my surgery, the natural progression of growing old or “just” managing a chronic disease or condition.

Only last Friday, after being home from the hospital for two weeks, did I finally get a usable grasp on my medications, their dosages, frequency and times of day. Food restrictions add another layer of complexity.

It took several hours to make a chart I can follow until my brain, out of daily practice, will finally know what meds to take when without consulting a list – and double-checking it to be sure I'm correct each time.

Fatigue requires daily management not only of one's own energy level but recognition of it by family members, friends and helpers. I tire so easily that I've given myself a routine of one hour up and about, one hour lying down or napping.

Even the normal activities of life are draining – the small amount of cooking I do, washing up the few dishes, paying bills, sorting the mail, answering email, etc. take their toll.

If there is an “event” in my day – a doctor visit, a physical therapist session at home, a friend stopping by, even phone calls with my medical team or friends – I need the next day to myself, to quietly regain my energy.

Until now, I did not realize how crucial the home assistance tools of recovery (see this post) are and it took a while longer for me to understand that for many elders, they are not temporary, that daily life without them can be nearly impossible.

It's hard to be old, something I've said in the past but did not know until experiencing it first hand how much effort goes into it every day.

That takes nothing away from the pleasures of life and it might be that the difficiulties make them even more precious.


First Post-Surgery Outing

JOURNAL ENTRY
The doctor removed my 20-odd surgical staples on Wednesday. For those of you who asked, it was no big deal, feeling something like a minor pin prick for each one.

Although I consider it a milestone, this, of course, does not end my recovery. The doctors and I discussed the eight or ten questions I'd brought with me, adjusted some medications and when I expressed my frustration with the slow return of energy and simple capabilities, the surgeon reminded me that this will take, overall, about six months before full normal activity resumes.

Not that there won't be noticeable progress toward that goal as the weeks go by.

If you don't count my ride home from the hospital on 29 June, until Wednesday I hadn't been outside since I checked in at the hospital on the morning of 20 June – more than three weeks ago.

That doesn't mean as much to me as it does to many people who like to be out and about every day. I like being home. Even so, I saw the trip to the doctor on Wednesday as my debut outing after this gigantic assault on my body, mind and spirit.

Among the extraordinarily kind friends and neighbors who are helping me out these days is Cathi Lutz who had volunteered to drive me to the doctor appointment on Wednesday.

She kept by my side as we walked to her car and was there in case I faltered as we navigated from the parking garage to the elevator and through halls to the doctor's office. I've been walking and balancing well at home so I did this without the walker and it went quite well. But I was happy to have Cathi for backup.

The doctor's office had phoned in a couple of new prescriptions so on our way home, Cathi offered to stop at the pharmacy to get them and I realized I was pleased to further extend the outing – excited to be out of the house and/or medical situation after so long.

When I said this to Cathi, we both laughed that the destination of choice (or, necessity for the medication) was – wait for it: Safeway. Go ahead, you can laugh too.

As always in these weeks since the surgery, I am paying for the change in routine today (Thursday) with a near complete collapse of energy. It happens this way every time.

According to the doctors, I am doing well but this is the way it is for awhile. I wish I could buy patience at the pharmacy as easily as a pill.


Post Surgery At-Home Assistance Tools

My 20-some staples come out today – three weeks and one day since the surgery and I'm glad for that. The incision looks nicely healed to me and it's time to move on.

Still, overall recovery will take much longer. A whole lot of stuff inside me was removed, relocated and reconnected in new ways so for several more weeks I am not allowed to bend over or twist my torso.

Until forbidden, you – like me – might not ever have noticed how often you bend every day. It can easily be dozens of times and as a result, I now have a reasonably large collection of special tools to help me do so many things I did without second thought before now.

You will be familiar with most of these but the last two might be a surprise for you.

WALKER
Of course, the ever-present walker. Lots of elders need this at some point – temporarily if not permanently. I navigate well on my own in the house but I'll take it with me just in case for awhile when I go outside.

Walker-folding

SHOWER STOOL
With the help of a home health aide, I took my first shower at home on Monday. It went well but no way, even with an industrial strength non-skid pad in the bathtub would I stand on one foot in the shower right now.

The shower stool is a steady, reliable solution.

Shower-stool

GRABBER
This tool is almost as ubiquitous as the walker. It is endlessly useful, as I found for laundry. I'd thought – hey, no big deal. I can drop the dirty clothes in the washer, put in the soap and then transfer it to the dryer.

Oh yeah? I have a stacked washer/dryer that would involve a major bend in the middle of my torso to get the wet laundry out of the washer. Not good. But then I remembered the grabber and all was well.

Grabber

NO-BEND BROOM AND DUSTPAN
Even if you've never used one, you've seen this a zillion times in your life. Custodians everywhere use them to keep floors in offices, schools and even ballparks clear of trash.

I've found it's also useful for all the things I manage to drop.

Longhandledbroomanddustpan

NO-BEND LITTER BOX SCOOP
Apologies that I don't recall the name of the TGB reader who recommended this to me. The image below is different from mine which includes a long-handled, small bucket to hold a plastic bag in addition to the long-handled litter scoop as shown in this photo.

It's slightly unwieldy to empty the litter box but it works fine.

Longhandledscooper

PROTECTING THE INCISION FROM THE CAT
Cats are unpredicatable and the last thing anyone just home from surgery needs is a cat landing on an incision.

A neighbor had told me that after her abdominal surgery several years ago, she turned a large cardboard box upside down, removed the flaps and cut holes at either end for her legs and chest.

She slept that way and was safe if the cat jumped on her - he'd land on the box, not her abdomen.

I thought this was a clever solution but I didn't have a big box. What I do have however, sitting unused in a bedroom corner for longer than I can remember, is a bed table. I place it over my mid-section when I'm in bed and sleep safely from the cat's potential errant ways.

Bedtable

CAT FOOD FUNNEL
As soon as I got home from the hospital I realized I had no idea how I would feed and water the cat. I couldn't bend over to get his bowls from the floor and he's too old and fat to jump onto the counter. What to do?

This is ingenious not to mention, the coolest thing: My neighbor, Lauri Lindquist, got a three-foot, cardboard tube. He then formed a plastic cup into a funnel and taped it to the top of the tube. Voila!

All I do now is place the bottom of the tube in the cat's food dish and pour his dry food through the tube. (Sorry the photo isn't better; you can barely see the plastic funnel at the top. I didn't have the energy to fool around to get it right.)

Catfoodfunnel

Lauri's wife, Judy Rossner, had the idea to use a watering can to carefully pour water in Ollie's water dish and that works too.

There are plenty of other useful tools for people coming out of surgery or who are disabled in other ways. They are all helpful and I'm grateful for every one of them. But my favorite is Lauri's homemade cat food funnel. Excellent.


There Was an Old Woman...

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...who was estranged from her only relative. A short, sad story.

They had adored one another as children – big sister, little brother. Then, the parents' divorce separated the two resulting in their living in different states, visiting on holidays and summers. The split came about thusly:

At age 15, big sister was allowed by law to choose the parent she lived with. Little brother was too young to be given the choice and further, government bureaucracy required that big sister go alone to a courthouse to answer questions from a judge about her homelife.

Sixty years ago, 15-year-olds were nowhere near as sophisticated as they are nowadays, big sister then being even more naive than many. She was frightened and nervous during the proceeding but did the best she could.

Life went on. In their adulthood, the sister and brother lived on opposite coasts of the United States. They hardly ever saw one another and then, mostly when sister traveled to the west because brother did not like to fly.

Time passed. At one point they developed a habit of spending an hour or so on the telephone together each Saturday and sister looked forward to that every week. It lasted quite a long time until brother's girlfriend announced she was now an orthodox Jew and brother could not talk on the telephone on the Sabbath anymore. No alternative seemed possible.

Thereafter, communication became a haphazard affair – neither regularly on nor entirely off.

Decades went by until circumstances brought big sister, now an old woman, to live in the vicinity of her brother. She thought, hoped they might be able to forge a new kind of sibling relationship in their dotage.

At their first holiday together, brother accused sister, who had taken on the caregiving their mother in her final months, of not equally sharing the small inheritance. Sister was shocked. It was nowhere near true; in fact, she had used her own money to clear up a few hundred dollars of extra bills that came in late.

Apparently, brother had been harboring his misbegotten belief for 20 years.

Next, brother refused a gift from sister because, he said, he could not afford to respond in kind – that is, monetary kind. Who, thought sister, tots up the price of gifts to make sure they come out even?

For those and some other disagreements, there was no resolution and for several years they each lived in their nearby towns without communicating.

Out of the blue, sister was hit with a life-threatening cancer diagnosis. As she prepared for surgery, she thought to inform her one and only relative, if only so that he had that family medical information for his own use if ever necessary. After vacillating, she sent a neutral, informational email.

Brother was terribly busy wrote his wife, but in several exchanges between the two women, there seemed to be some room for a rapprochement that sister welcomed even if something god-awful had brought it into being.

As she prepared to leave for the hospital at 5AM on the morning of her surgery, sister checked her email for what she surmised would be the last time in awhile. There, time-dated at 2:43AM on the morning of that frightening medical ordeal, was a note from brother.

There was something he wanted to clear up, he wrote. The gist was that because of sister's conversation with the judge 60 years previously, brother had “lost his family” and grew up with the wrong parent which had ruined his life.

But oh, he added in closing, sister was his one and only relative so she had better survive, signing off with “love.”

The ride to the hospital felt longer for the old woman than it really was and she couldn't get her brother's monstrously timed note out of her mind even as she was wheeled into the operating room.

Because neither brother nor his wife has followed up since then, the old woman assumes they have come to see that with such a grotesque message sent in the final hours prior to sister's surgery, an immutable line was crossed.

Even so, not a day has passed – nor a few nights - that the old woman has not been haunted by this sad, painful story in all its aspects, wondering again and again from whence such cruelty arises.

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PERSONAL ADDENDUM: As just about every TGB commenter has mentioned over the past several weeks since this difficult new "adventure" in my life began, an optimistic outlook - within the context of reality - is crucial to a good recovery. With some effort, I am maintaining that and it is in no small part to the warm, loving support of this TimeGoesBy community.


Surgery Recovery – Day to Day

(NOTE: This is a report about my personal progress – no one else's. Maybe there are hints for others in a similar recovery, maybe not. Aside from the general path toward recovery, none of us can know another's needs or solutions. This is one person's journey to wellness that might - or not - have a little value for some others.)

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Nothing anyone told me prepared me for how hard this recovery is. I think that unless you are on a second or, god forbid, a third major surgery, you have no idea.

This is the hardest thing I have ever done.

Two weeks after the surgery, Wednesday, was my first pain-free day. The only discomfort was, and still is, where the 20-odd staples are in place down the middle of my torso. But that's only an irritation, not pain.

(If I were 40 years younger, I'd plan for a zipper tattoo when I am healed.)

The sorriest difficulty, which continues so far without improvement, is that the thing that most heartens and inspires me is also the most exhausting. Let me tell you about exhaustion, the kind I have never imagined:

A walk from the bedroom to the kitchen requires a sit-down rest. Scrambling an egg and washing up the pan and dish is equally tiring. Cleaning the cat's litter box – even with a special long-handled utensil (I'm not allowed to bend or twist) – requires a lie down.

But worse than that is how much a friend's telephone call or neighbor's visit depletes me while, ironically, also invigorating me – if only in my heart and not my body.

Any phone or in-person visit longer than about 15 minutes results in an hour's nap but I know they also make me feel better. So I try to balance but other forces get in the way.

On Tuesday, a woman from a home health care service came by and spent two hours taking my medical history, medications, inspecting my home and taking notes. She is smart, knowledgeable and spelled out a good course of help.

But after those two, long hours, it took all of Wednesday in bed to get back to my (admittedly, low) normal. A phone call that day with the pharmacy to sort out a prescription took more attention than I was capable of giving.

Eating is difficult. I'm almost never hungry so must force food in five or six small meals a day. Most of the time it feels as though I've just finished Thanksgiving dinner so I worry that I'm not getting enough calories and protein. I've not found a solution but to hope for improvement as healing continues.

There is a dreaminess to my days. I've made myself a schedule of one hour up and one hour in bed that I intend to expand to 90 minutes when I feel ready. The in-bed time expands and it's not that I sleep. Nor read. Nor watch television. Nor listen to music necessarily

I'm in a kind of stupor then, aware of what's around me if I care to pay attention but mostly drifting to head places I don't recall when I “come to” again.

Although it takes several sittings over two days to get one done, writing these blog posts keeps me focused for longer periods. I've decided that's good for me.

Recovery from something as big as this surgery is, I think, living in another world for awhile that I never imagined existed.

Watch this space for a story about the ingenious tools some neighbors and others have invented to help me through these weeks of recovery.

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FACEBOOK: For many years through Typepad, the company that hosts this blog, each post has automatically posted to Facebook. A week or so ago, Facebook, without announcement or notification to Typepad, stopped this connection so that TGB posts no longer show up on Facebook.

Typepad tells me that I can let TGB Facebook readers know about a new post by including a link to the blog in a "status update" on Facebook. I have no desire to learn any more about FB than I already know but apparently I am being forced into this much. Anyone who can explain what a status update is and how I do it, please let me know in the comments below. And thank you in advance.


My Pancreatic Cancer Prognosis

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According to my surgeon, only 10 percent of pancreatic cancer patients are eligible for surgery. Had I not been one of them, there would have been, essentially, no useful treatment.

Following surgery, it was a week before the pathology report on the bits and pieces taken from my body was ready. In words you and I can understand, here is what it said, the short version:

The mass in my pancreas was positive for pancreatic adenocarcinoma – pancreatic cancer to you and me.

During surgery, called the “Whipple Procedure,” the diseased part of the pancreas was removed along with my gall bladder and some other parts. The tumor was determined to be “clean at the margins” - that is, cancer had not escaped the pancreas.

In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; two were positive. Here is what that means for me.

There are types of chemotherapy to treat this cancer and I will meet with a medical oncologist about that sometime in the next month or two. According to my surgeon and his team, a few people respond to this treatment and live up to ten more years.

Sounds good except that 80 percent in my circumstance who take this treatment are dead from the disease in five or fewer years. Numbers may vary from other sources but not enough to talk about.

(Excuse me while I take a moment for another small weep.)

Well, that's a stunner. Even though I'm 76 years old and even though my parents and other relatives died of one cancer or another when they were younger than I am, I was aiming for my grandmother's lifetime (92) or my great aunt's (89).

Nonetheless, I find it hard to complain that 77 or 78 or 80 years is not a decent run at life. And I have no patience with “miracle” alternative cancer cures – believe me, if they were real we would all know about them. Nor do I place any hope in beating the odds – a foolish waste of time.

Beyond that, my thoughts are an unrelated jumble still fogged from the effects of surgery, anesthesia and follow-up drugs – not useful. It takes every bit of my physical and mental effort right now to work out my medication schedule, figure out this new way of eating and give my body time to recover from the trauma of the surgery.

Walk, they tell me, even short distances. Keep your feet above your heart to reduce the swelling in your feet, ankles and legs. Well, which is it? How do I balance that?

Not to mention nap time. For the short future, I'm doing one hour up and about, the next hour in bed and so on.

I want to answer your lovely email and snailmail cards but 30 minutes at the desk every couple of hours is my body's and mind's limit and there are also banking, bills, personal business items, etc. to deal with.

Thinking time too. How do I want to spend the months and years remaining to me? I don't expect to answer that now, all at once, but the thoughts bubble up and need attention or, at least, notation before they float away.

The most I've figured out so far is that I desperately do not want to become a professional patient but I don't even know yet how much of my time and effort will need to be devoted to being as healthy and active as possible.

There is a lot more to life than dying and I still want as much of it as I can get.

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Recovering at Home

This post has been the Saturday Interesting Stuff for many years but not today. I'm writing on Friday morning because I am too tired now to think that I can do any better later.

One day at a time. Up days. Down days. Certainly I overdid on Thursday so I'm taking a makeup rest day. No need to comment - you have all been wonderful keeping my spirits high.

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