Pretty much all old people complain about how time moves faster now than it did when we were younger. An hour can, and frequently does, feel like 10 minutes to me. But if you compare your clock to a young person's, they match no matter what your subjective estimate of time's passage is.
Children are well known to have an opposite “wait” problem with time. Even when their birthday is due in a week, it feels to them like the day will never arrive.
I have my own theory about what makes time perception so different between children and old people. I doubt it's unique – I probably read it somewhere but here it is:
Children have short attention spans. They switch what they are doing more frequently than grownups. Coloring is fine until the dog wanders by and the kid wants a snuggle. Then she settles down with a new favorite book until that pales and she tracks down the movie, Frozen. And so on.
In that same period of time, her grandmother has probably read a few news stories – one activity compared to several of the child's. The child, obviously has many different and more importantly, often new experiences in that period which tends to stretch out their time perception, making the activity more memorable than an adult's with fewer new activities.
I've spent a lot of time in my life trying to figure out the slipperiness of time and I've accumulated a small but impressive library of books on the subject.
The website, Exactly what is...TIME?, has collected a lot of information about time too and made it easy for non-philosophers and non-physicists to understand.
People have been trying to figure out time since – well, time immemorial. According to that website:
”Nearly two and a half thousand years ago, Aristotle contended that, 'time is the most unknown of all unknown things', and arguably not much has changed since then.”
In general, time cannot even be adequately defined. Many years ago, I kept a fortune cookie fortune taped to my desk because its definition of time seemed to me to be as good as anyone else's and practical too:
”Time is nature's way of making sure everything doesn't happen at once.”
Works for me. And now I find out that definition is prominently listed on the Time website, where you can also read about black holes (where time began?), the big bang, deep time, space-time and many other theories of time.
Since the mysteries of time are unlikely to be solved any time soon, I'll see if there is anything I can do about my personal difficulty on the subject:
My lament nowadays is how long it takes to do almost anything compared to the past. Apparently I move at about half the speed I once did and time itself seems to be moving at least twice as fast as it did back then. You do the math – no wonder I'm always behind.
What about you?
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My former husband and I held our biweekly chitchat yesterday - The Alex and Ronni Show. We discussed my “new look”, parents, old age and related topics.
As author of yesterday's Reader Story, officerripley, certainly hit a chord with denizens of Time Goes. Lots of other readers joined in with related personal stories, useful information and no small amount of wisdom.
If you missed it, officerripley's story and the comments are all worthy of your time to read about finding our tribes in old age.
There was a consensus among some who commented that this blog is kind of a tribe of its own and some wondered how readers who get to know one another via those comments could be put in touch with one another in person or, at least, email.
We tried that a month or two ago when I explained how I would put one reader in touch with another if both agreed. After all the setup, I received only one request.
Due to how easily I tire these days because of my breathing difficulty, I can't take that on again right now, but remind me in a month or so and if enough people are interested, we might give it another try.
A long while ago, nearly 10 years, when I first moved to Oregon, I held an in-person meet-up at my home. About 10 or 12 local readers came and we had a lovely afternoon.
Yesterday, reader Charlotte Dahl left this note in response to reading about 25 comments before hers:
”Sounds like a family to me. Wouldn't it be great if we could all meet up and form our own tribe? Meanwhile we can still be pen pals.”
As I said, it is a decade later now and with my cancer, breathing, etc., maybe I don't have the energy for it now, but let's see in a month or six weeks. We're in the good-weather period of the year and maybe an in person get-together is something we would like to try - at least for people who are nearby - and perhaps other might be able to do it at the same time in their communities. We could Skype one another's meet-ups.
Now, here is today's episode of The Alex and Ronni Show - this one about a radio program we produced with John and Yoko just about 50 years ago. (The video starts in the middle and I don't know how to fix that. Just move the slider at the bottom to the left to start at the beginning.)
What a terrific discussion you made of Wednesday's post from Crabby Old Lady. I mostly keep our distance on this blog from the constant turmoil from Trump – there is more than enough writing about him and his misplaced belief in his own genius.
As Susan began her comment:
”Dear Crabby Lady: Thanks so much for making me feel not so alone in the spikes of “omg, what is it going to take for someone to do something here?????!!!)”
“Making me feel not so alone”. There is nothing quite like talking with and listening to others to help us understand our predicament whether it is a dangerous president or growing old.
”...it helps – a lot sometimes - to learn that other people are struggling through the same things you are. It doesn't mean we don't also laugh, read books, go to the movies and whatever else engages us that is still possible. But letting off steam together kind of clears the air.”
On The Alex and Ronni Show that my former husband and I recorded yesterday, we took opposite sides in our discussion of growing old. Alex sees the darker side; I take a lighter view of.
It's mid-afternoon and I'm tired so I will cut this short today.
Yesterday, my former husband, Alex Bennett, and I recorded our biweekly video. We caught up on my condition with pancreatic cancer and talked a great deal about Jeopardy! host Alex Trebeck's recent diagnosis of the same disease.
We also spent some time on climate change, on both Trebeck's and my personal feelings of our great, good luck having so many people who send us much love, concern and care about our disease. We even managed to sneak in a short mention of “Jeopardy James” at the end. Have a look:
”Are you, Ronni, considering suicide? I support whatever decision you make. Realize also that there is a suicide hotline phone number. Call them first.”
Not “considering suicide” it, Ellen. I have chosen it – medical aid in dying - when the time comes.
Although we have discussed this before on this blog, it has been awhile. I live in Oregon which more than 20 years ago passed the first “death with dignity law” - also known as “physician-assisted suicide” and “medical aid in dying” along with a few other names.
In April this year, New Jersey's governor signed a bill making that state the eighth to allow terminally ill patients to request prescriptions from their doctors for medication to end their lives. It will go into effect on 1 August.
Of course, using these laws is a bit more complicated than just saying, “Hey doc, I'm ready for those pills.”
All the states that allow medical aid in dying have similar restrictions in place. Among them:
• The patient requesting the drugs must be mentally competent
• He/she must have fewer than six months to live as diagnosed by a physician
• The patient must initiate the request for the drugs
• The request must be confirmed by two people who are not the patient's physician nor employed by the health care facility treating the patient
• If the patient wishes to proceed, he/she must wait at least 15 days before making a second request
• The patient must administer the drug him- or herself
Wikipedia has a good short overview of how the laws generally work.
The State of Oregon's website, About the Death With Dignity Act, has pretty much everything you would want to know about it. Here are links to the pages about the laws in the other states that allow it, where there are also links to more resources:
With way too much on my to-do list yesterday, I never got around to writing a “real” blog post so let's try this.
My former husband and I recorded our bi-weekly video chat on Tuesday and unlike so many of them in the past, we hardly discussed health issues.
Instead, we talked mostly about something I hardly ever write about here, national politics: Trump, the Mueller report, crime in high places, and those 437 Democratic presidential hopefuls (at least it feels like that many).
Of all those potential candidates, I told Alex I have a leaning toward Mayor Pete Buttigiag. Still, it's a long way until the 2020 election and god only knows what will happen or what we'll learn about the candidates by then that will change our minds.
So, here is the video. Take a look and then have your go at the campaign so far, in the comments below.
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.”
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.
Recently, I overheard some younger people (not youth, more like – oh, early middle-age, late 30s to mid-40s or so) making plans together for a celebration they were looking forward to.
The friends were filled with enthusiasm: You'll do the decorating, right? Who wants to cook? Wait – have we decided on a menu? I'll take care of invitations. And so on.
Pulling it all together sounded like fun (I used to entertain a lot) until I recalled that those days are long behind me. I don't have the stamina nowadays, or even the breath, to do that much work.
What struck me then, however, is that as these younger people continued with their plans, how free they were from even noticing this would be the lot of work I knew it to be.
Because it would not feel like it to them.
That used to be me when I was their age. It never occurred to me then that older people would have trouble getting the preparation done, and I doubt those party planners I was overhearing thought about it either.
Because no one tells us when we are young that old age will be different. It will be harder than when we were 20 or 30 or 40 and maybe even 50.
Part of the reason, too, is that age groups in U.S. culture spend hardly any substantive time together so why would the generations know how we differ (and don't differ) from one another.
Elders' loss of strength, energy and stamina as the years pile up isn't a bad thing; it just is. Bodies wear out and perhaps youth's ignorance of old people's physical decline gives them the freedom to use their energy to full effect. Why burden them with information they don't need yet.
Or not. I'm not sure what I believe about this – it was just a passing thought that day. It's up to you now.
Yesterday, my former husband and I recorded one of our biweekly videos which, once again, centered on old-people chatter. That's because we're old.
Did you miss me? I sure missed you – five days of no access to Time Goes By, nor to email. I left a couple of notes about the problem on Facebook so you wouldn't think something terrible had happened but it's only a small group of you who access TGB from Facebook.
Sorry to have put a scare into you.
The problem came about last Wednesday when I was switching from one domain registrar to a new one. It's been more than a decade since I last did that but as careful as I was I screwed up, losing the blog and email.
Email mysteriously returned on Saturday after several semi-productive telephone conversations with the help desk at one of the registrars. I still don't understand how that happened. I'm just grateful it has returned.
Then, the always wonderful people at the Typepad help desk (which has hosted TGB for all 15 years of its life) restored Time Goes By to its – ahem – glory, and now I'm ready to get back to blog business.
The return of TGB began yesterday with posting a new Reader Story. The fix happened so late in the day, I was too tired to write a new post and I was otherwise engaged on Tuesday so I just went with this explanation and the bi-weekly Alex and Ronni Show. I think after today I'm back to usual TGB form.
THE ALEX AND RONNI SHOW
This is what should have been last week's episode of The Alex and Ronni Show.
The video is frozen for some seconds at the top of the video and it's out of sync otherwise. Alex has been having sync and other problems with the latest version of Skype and we both ask your indulgence as he works out the difficulties.
The Alex and Ronni Show at the bottom of this post featuring Ronni's black eye.
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The U.S. Food and Drug Administration (FDA) last week, issued an alert to older people that transfusions of young people's blood as an anti-ageing treatment are “unproven and potentially harmful”.
”The FDA goes on to note that such infusions are known to pose a range of health risks in humans,” reports Ars Technica. “These risks include spreading infectious disease, triggering allergic reactions, and causing lung injuries.
“In some people—particularly those with heart disease—the infusions can also overload the circulatory system, causing swelling and breathing trouble, the agency explains.”
I reported on the goulish “young blood” transfusions two years ago highlighting a private clinic called Ambrosia in Monterey, California, where people could pay $8,000 to have blood plasma from teenagers and young adults pumped into their veins.
Ambrosia's owner, Jesse Karmazin, said then that most participants “see improvement” from a one-time infusion within a month.
Although the FDA did not mention Ambrosia in their warning last week, STATnews reports that
”Karmazin, has yet to report the results of a clinical trial he ran testing the procedure, which involves an off-label use of an approved product. On Tuesday [19 February 2019], however, following the release of the FDA statement, a notice on Ambrosia’s site said it would no longer offer the transfusions.”
Further from Ars Technica:
”The sellers suggest that doses of young plasma can treat conditions ranging from normal aging and memory loss to dementia, Parkinson's disease, multiple sclerosis, Alzheimer's disease, heart disease, or post-traumatic stress disorder, according to the FDA.”
People have been looking for a fountain of youth since at least Alexander the Great without any luck. But a growing number of researchers throughout the world have been working for years to develop treatments to slow the ageing process and extend the human lifespan.
I would be a lot happier if they would concentrate on those diseases of age listed above. As an old woman living with terminal cancer, I agree with Markus Kounalakis writing at Washington Monthly:
”The latest young blood therapy will likely only go to risk-taking well-heeled early adopters and late stagers. Here’s an alternative: Live a happy life, love, practice random acts of kindness, drink in moderation, and don’t smoke. It’s a lot easier than getting stuck with either a needle or a big blood bill.”
On Wednesday this week, Representative John Larson (D-CT), Chair of the Social Security Subcommittee of the House Ways and Means Committee, announced the introduction of the Social Security 2100 Act.
There are more than 200 co-sponsors for the legislation – all Democrats – even though the bill includes some conservative elements. As long-time Social Security and Medicare advocate, Nancy Altman, explained in Forbes:
”These include a tax cut for middle-income seniors and other Social Security beneficiaries who are currently required to pay federal income tax on their benefits.
“They also include the restoration of Social Security to long-range actuarial balance for three quarters of a century and beyond.
“In addition to requiring the wealthy to contribute their fair share, the legislation would gradually increase the Social Security contributions (FICA) of workers and their employers. FICA, which currently applies to wages up to $132,900, would also apply to wages above $400,000.
“The FICA rate, currently at 6.2% on employees and employers, would increase by .05% a year — 50 cents a week for an average worker — until it reaches 7.4%.”
Even with such strong support among House Democrats, the bill is unlikely to pass the Senate or White House this time. But in the past few years, the political atmosphere about Social Security has shifted from all talk all the time of cutting it because the program is bankrupt (it is not) to expanding it.
Representative Larson is committed to holding hearings throughout the country to debunk such myths and educate the public on the importance of Social Security to all Americans:
“'We need to educate and unmask so many of these myths,' Larson told [Reuters reporter Mark Miller].
“'We need to talk about why Social Security is an earned benefit and not an entitlement. Certainly it is something you are entitled to, but the word makes Social Security sound like a poverty program or a handout. Nothing roils people who have been paying into the program their entire lives more.'”
Keep that in mind: don't let anyone tell you Social Security is a “entitlement”. It is an EARNED BENEFIT that every working American pays for through payroll deductions during his and her working life.
Be sure you let your Congress person know you support this legislation and remind them every now and then how important this is – even if they already support the legislation. You can do that here via telephone, email or postal mail.
The legislation may not make it through the Senate this year, but it will happen eventually. A majority of American support it – even President Trump during his 2016 campaign (although I do know that he can change his mind on a dime).
* * *
My former husband, Alex Bennett, and I had our regularly scheduled Skype conversation on Tuesday.
Somehow it turned into mostly a bitch session - complaints about minor things that are unlikely to get fixed so what's the point. Maybe it's just blowing off steam on entirely unrelated issues going on with the government in Washington, D.C.
Yesterday, my former husband, Alex Bennett, and I sat down for our first Skype chat of the new year. Just two old friends who've known one another for about 60 years catching up with what's going on in our lives.
It's been hard in recent days for me to keep all the balls in the air at once so it is the easiest solution today to post the latest Alex and Ronni Show video. We recorded it yesterday, Tuesday - just a Skype chat between two old friends who were married for awhile about half a century ago.
Before we get to the latest edition of The Alex and Ronni Show, some housekeeping notes.
In the past couple of weeks, I've had some trouble breathing. The simplest things like bending over to tie my shoes or just taking out the trash can leave me heaving to catch my breath. Actually, it's been hard to do almost anything more energetic than sit at the computer these past days.
On Wednesday, my oncologist ordered a new CT scan which shows that the cancer in my lung is getting worse than expected at this point causing the shortness of breath.
A different chemo may help and the side effects, as they have been explained to me, are probably manageable. I'll begin next week and we will know within two weeks or so if it is helping.
As I think I mentioned not long ago, all my life I have kept journals with the goal of helping make sense of my world and figure out what I am thinking or believe. With this cancer diagnosis, I moved some of that to this blog and many of you have been kind enough to assert that these posts are a help to you and others.
To the degree that is so, I am grateful that my meandering thoughts and reports about my predicament have some value. Your comments buoy me, make me feel better and often contain useful information or, even better, make me laugh.
When I started this blog 15 years ago, of course I had no idea this is where it was heading. And I didn't know how important this “job” would become to me. I segued straight from work when I retired to this new work. I still love doing it and I will continue for as long as possible. It is what I do.
Some of you comment privately via email and I appreciate that too. But because of this latest cancer development and its effect on my energy, I can't get nearly as much done as before. Although I've tried (and mostly succeeded) answering all your email notes, I need now to take that pressure off myself.
So you're welcome to email me still, but I won't be able to answer anymore. I hope you will understand.
And now, here is the most recent Alex and Ronni Show recorded last Tuesday before I had received this latest cancer news.
EDITORIAL NOTE:Today's edition of The Alex and Ronni Show, in which we discuss the subject of today's blog post, is at the bottom of this story.
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It was a whim. I've never had much interest in my ethnicity; my face pretty well tells the story so if you don't want to build a family tree – I don't - why bother.
But those DNA websites were having a sale late last year and if my mildest curiosity had not been worth $99 to me, $59 seemed reasonable. I ordered the kit.
A month later, this message appeared in an email via the DNA site. It was a shocker:
”Dear Ms. Bennett,
“It appears you and I are related in a fairly intimate way.”
“Fairly intimate way?” Talk about a gift for understatement - it was a 50 percent match: my child.
Let me back up more than half a century.
I was barely 21, just a kid, when I became pregnant in 1962. Although “the pill” had been available for a year or so, I was not using it and abortion, whatever one's moral beliefs, was illegal. When I told the baby's father, he couldn't get away from me fast enough. I never saw or heard from him again.
In addition, I knew that on just about every level, I was not at all prepared to be a mother. All that left only one option.
We were called unwed mothers in those days and there was a profound stigma attached. Suddenly, girlfriends were too busy to hang out and I certainly could not stay at my job once my condition became evident. Except for my mother, I was alone.
What I did have, however, was a warm and down-to-earth obstetrician who took good care of me and with his staff, found an adoptive family I would have chosen myself. In fact, I did – I was told a lot about them and allowed refusal rights.
One amusing story I haven't thought about for years until now, as I write this: Well into the pregnancy I woke weeping one morning, wailing that I was supposed to give birth to a baby but had a cat instead. It was one of those dreams that was as real as real.
A dream cat notwithstanding, in February 1963, I gave birth to a healthy, (human) baby boy and he went home with his adoptive family at the same time he would have with his birth mother.
Which brings me back to late last year. Tom Wark is in his mid-fifties now. He is married for the third time with a four-year-old son and lives in the Napa Valley. He is a wine expert, owner of a public and media relations company targeting the wine industry. His wine blog, Fermentation, is here.
Early this year, we exchanged some email until May when I dropped away, or so it must have seemed to Tom. Part of it was the two surgeries I underwent to stop the internal bleed that threatened my life then but that wasn't entirely it.
I felt awkward. I didn't know what to say and I didn't know what is expected in such circumstance. I did not and don't feel motherly toward Tom but neither do I believe I should.
Motherhood – and fatherhood – have nothing to do with giving birth. They are about day-in and day-out care and loving of a child no matter what. I have no experience with that nor any of the rights attached.
So although I felt uncomfortable about dropping out of the email conversation, I wasn't sure how to pick it up again. Then, three weeks ago after reading my recent emails about the return of cancer, Tom reached out by email.
Since then, we have had two lengthy telephone conversations with more planned. Tom says that in certain photographs he can see a resemblance between us. I can't. But we have discovered other similarities.
We were both good students except for science and math mainly because neither of us were interested in those subjects. We are both more literary types. We love books and own a lot of them. In my case, they are my friends and I'm betting Tom would say that too.
Further, we share a love of time travel stories, and we've both read everything Gore Vidal ever wrote. Some personality traits seem near matches too.
Oh, and Tom noted that we each started our blogs way back in 2004, when they were a brand new media platform.
After these two long phone chats, I am most interested now in learning more about Tom and what I think I see as similar mindsets – how we tell stories, for example, and the kinds of connections we make getting from one subject to another.
Most of all, after our first conversation which lasted two hours, for several days I felt a warmth and closeness that, in my experience, doesn't show up until I've known someone for a long time. It happened again after our second conversation. I am comfortable with this man.
Plus, I really like Tom's understatement in his first email. I'm always so proud of myself when I can do that, but it's not easy to pull off – at least for me.
Following my cancer surgery last year, it was six or eight weeks before I felt capable of driving to the market, medical checkups and other appointments. I live in the suburbs so there isn't much choice in getting anywhere beyond walking distance except by driving.
I was lucky. Terrific neighbors and friends stepped in to take up that slack while I needed it but not everyone has that choice.
According to the 2016 Older Americans Key Indicators of Well-Being report [pdf], 25 percent of men age 65 and older live alone and 36 percent of women in that age group do. Some have friends and family nearby to help out when needed but tens of millions of us do not.
That's what Andrew Parker realized not long ago that led to his founding Papa, a service that matches elders in need of some assistance with college students who want to help.
Parker had been regularly helping his grandfather – whom he calls Papa – but as his day job workload increased he couldn't always get away to run errands. He hired a woman via Facebook who began assisting Papa in Parker's stead. But as he told TechCrunch:
”The experience made Parker realize there was a gap in the market for seniors who, like his grandfather, were mostly independent and don’t require a caregiver, but still needed occasional help from a trustworthy person.”
That's when he quit his job to create Papa, providing “what he describes as 'pre-care' from college students he named Papa Pals.”
Here's Andrew Parker talking about Papa:
Parker further explained how it works in an interview with Pymnts.com:
“'The first time someone contacts us, they often have a specific idea about what they need, and we catalog that and send it on to the student who will be working with them. Sometimes they want a ride to the doctor, sometimes they are looking for someone to teach them how to use Netflix.
“'We had a member who was on the campaign trail with Ronald Reagan 30 years ago, and her family hired a Papa Pal to help her transcribe her very interesting life story into a digital format for her family.'
“What they often found, however, is that the relationships evolve between the users and the Papa Pals, so that the tasks they end up doing together often range widely from where they started.
The students are carefully screened before being accepted as Papa Pals. Among the requirements, according to the Papa website:
• 3.0 GPA or higher
• Major/Minor in Nursing, Psychology, Pre-med, Health Sciences or other health-related field preferred
• Full or part-time student enrolled in a four-year university
• Must have a valid .edu email address, a vehicle and a valid drivers license
• Must be able to pass a full background check
Clients can pay for services a la carte at about $20 an hour, or use the subscription service. The student Papa Pals earn about $15 per hour.
Beginning in 2019, new rules will make it possible for Medicare Advantage to pay for some of Papa's services, particularly medical appointment transportation.
For now, Papa operates only on Florida but they have plans to expand, first to 10 more states and then beyond.
I think this is an extremely important innovation. Whether we elders like to admit it or not, the time will come when we can't do as much as we once did and may even need to give up our driving privileges.
As I mentioned above, I had a taste of what is to come after my surgery. It was a long time before I could shove the vacuum cleaner around and even pulling the laundry out of washer and into the dryer was difficult.
For people who don't need full-time care but can use some help in other ways, this is a great solution.
Your response last Wednesday was overwhelmingly positive. More than 100 yes responses to reinstating a regular feature of stories told by Time Goes By readers.
Here is how it will work:
I've taken several commenters' suggestion to start light – one story a week. That will be on Tuesdays and in time, maybe expand to two days a week by adding Thursday which is currently dark.
My biggest concern, based on the huge response last week, is that there will be so many stories we'll never get them all published at the rate of one or even two a week.
For now, let's see how that goes and if the story pile gets too high, perhaps I will open and close the submission window as needed depending on the number in the queue.
There is a new link in the right sidebar under “Features” - Story Submissions/Guidelines. That will take you to the Rules of the Road page and where you will always find a link to an email form to submit a story.
You may also submit stories via the “Contact” link at the top of each blog page. Just PLEASE read the guidelines before submitting.
There is also a new link in the “Categories” cloud in the right sidebar: Readers' Stories. That will take you to a page listing all published stories in reverse date order with links to them.
Author names and story titles are findable from the search box at the bottom of the right sidebar.
That does it, I think – all to be amended as needed, and you may now begin submitting stories. The first one will be posted next Tuesday.
* * *
Here is the latest episode of The Alex and Ronni Show recorded yesterday. If you would like to see Alex's entire two-hour show with other guests following our chat, you can do that at Facebook or Gabnet on Facebook or on YouTube.
[NOTE:On Tuesday, my former husband Alex Bennett and I, recorded a new episode of The Alex and Ronni Show. It is posted at the bottom of this story.
* * *
As I begin writing this on Thursday morning, everything is fine. It's a normal summer morning - the sun is shining (it will be a scorcher this afternoon), I've had breakfast, am working on another cup of coffee and looking forward to lunch with a friend.
Nothing remarkable is going on.
And that is the point.
There have been a lot of new subscribers to TGB in the past couple of weeks so here is a short recap to bring you up to date:
In June 2017, I was diagnosed with pancreatic cancer, endured a 12-hour Whipple surgery from which it took most of a year to recover including three months of chemotherapy.
An internal bleed developed leading, over months, to many blood transfusions and, eventually, two (much less invasive) surgeries in April that were successful. There has been no bleeding since then but thanks to the chemo and the blood loss, I became severely anemic.
That led to five, weekly, liquid iron infusions that ended three weeks ago.
Okay. That is the bare bones history. It is the hardest thing I have ever been through in my 77 years, and although I went for the treatment, deep down I believed I would be dead by now.
Personal health reporter Jane Brody pointed out in The New York Times earlier this week that pancreatic cancer is rare, accounting for just three percent of all cancers, but is one of the deadliest:
”Although 55,440 cases, affecting 29,200 men and 26,240 women,” writes Brody, “are expected to be diagnosed this year in the United States, 44,330 people will die of it, often within months of diagnosis, making it the fourth leading cause of cancer deaths in this country (after lung, colorectal and breast cancer).”
I ran those numbers. They mean that only 20 percent will survive beyond a few months.
Back in mid-January, after the chemotherapy ended, my Whipple surgeon told me that blood tests had revealed “no current evidence of cancer.” (They are always so meticulously careful with their wording, these cancer doctors.) “Go,” he said waving me toward the door, “and enjoy your life.”
God knows I tried but I didn't feel much like celebrating. Certainly I was relieved but it was tempered with the knowledge that blood tests are not conclusive.
Three weeks later, after reviewing other tests including a CT scan which is more definitive, my oncologist said to me, “There is no sign of the cancer at this time.” (They are always so meticulously careful with their wording, these cancer doctors.)
But I still wasn't ready to throw a party. Smiles on the faces of friends when I told them the scan results were hugely encouraging prompting my own smiles in return. But facts interfered with the joy I believed I should be feeling.
Undoubtedly that reticence was due at least in part to the fact that I knew – and know - pancreatic cancer is resistant to most therapies and it often recurs following surgery either in the pancreas again or another body part.
And even if I had been dancing in the street, there was still the anemia plaguing me which, weeks later, led to the iron infusions.
Thursday morning (today, as I write this), I woke to an email message linking to my online medical records where there were results of blood tests taken on Wednesday. There was also a note from my primary care physician:
”Your lab work looks great!” he wrote. “No signs of anemia and looks like your iron stores are all tanked up.”
And then, THEN – even though the anemia was due to blood loss and chemotherapy, not cancer – I finally felt free to celebrate. I thought my heart might burst as tears of joy spilled into my coffee.
It seems nuts to me that overcoming anemia makes more difference to my sense of good health than cancer-free test results earlier this year. I felt the gradual return to more normal energy levels during the five weeks of iron infusions but there had been poor test results for so long I don't think I trusted my own senses.
I haven't forgotten the high incidence of recurring cancer I face but now I can set that aside. That's what I have wanted more than anything – to feel like I did before all this happened.
And now I do. Yes, some bits and pieces are missing. I'm short a gall bladder, a duodenum, part of my stomach and half my pancreas. There are three or four pills I need to take several times a day for the rest of my life to make up for those losses.
But that is nothing compared to this marvelous feeling of well-being and most of all, ordinariness I have now.
U.S. Supreme Court Justice Ruth Bader Ginsburg – “Notorious RBG” – has been a hero of mine for a long time. What I did not know until sometime after my initial diagnosis is, as Jane Brody explains in The Times, Ginsburg
”...had part of her pancreas removed after a routine CT scan revealed a one-centimeter lesion. While that lesion was benign, a smaller tumor the surgeon found was malignant and had not yet spread beyond the pancreas.”
That happened in 2009, when she was – as I was last year – age 76. Justice Ginsburg gives this old woman hope she too can make it at least another nine years cancer-free and even resurrect her pre-cancer goal to live as long as her great aunt Edith, 89.
But it doesn't matter if I don't. The universe gave me this extra time that 80 percent of pancreatic cancer patients don't get. Most of all, right now, I want to wallow in the joy of my return to ordinary health.
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Here is latest episode of The Alex and Ronni Show.
It's no secret that people often walk more slowly as they grow old. Some use canes or walkers, and wheel chairs too that can further impede their speed, and this happens at a time in life when, in some cases, driving is no longer a choice.
The result is serious injury and, too often, death in crosswalks where walk/wait signs don't take older, slower pedestrians into account. Cyclists of all ages are also at high risk.
Recently, my friend and elderlaw/consumer attorney, John Gear of Salem, Oregon, forwarded a story about all this from The Guardian:
”...the tragic rise of cycling and pedestrian deaths in a city such as Toronto, the biggest city in one of the world’s most progressive countries, demonstrates that we are caught in the transition.
“We are adding density and pedestrians and cyclists without transforming the design of our streets, and in many cases refusing even to lower speeds limits, which tends to reduce deaths dramatically.”
The Toronto Police department maintains a “Killed or seriously injured” data page online. Numbers for the year 2017 show that 52 percent of pedestrian fatalities involving vehicles were people 55 and older (23 deaths in 44 collisions).
Counting all traffic fatalities in 2017, involving pedestrians of all ages, those 55 and older made up 23% of the total (36 deaths in 151).
The number of fatalties in 2017 in Toronto was down from 2016, when a five-year project, Vision Zero, was created to decrease traffic fatalities to zero. But recent numbers are not encouraging:
”...the rate of deaths on city streets is not declining,” The Star reported in May this year. “Including Wednesday’s fatal accident 18 pedestrians or cyclists have been killed in Toronto so far this year, according to data compiled by Toronto Police and the Star.
“That pace exceeds the number killed by May 16 in both 2013 and 2016, the two worst years in the data, which goes back to 2007.”
The demographics of cities everywhere are changing and, writes Jennifer Keesmaat in The Guardian story, that means streets, originally planned to be auto-friendly, must become more pedestrian- and bicycle-friendly:
”In the old model, if driving is the key to freedom, then cyclists and pedestrians need to get out of the way. They are audacious, misplaced and – even worse – entitled. Who and what are streets for, anyway? They are places to get through, and fast. Lowering speed limits to ensure pedestrians are safe makes no sense...
“In the new model, however, streets aren’t just for getting through – they are places in their own right, designed for people, commerce, lingering and life. It’s the people, the human activity, that should come first.
“Cycling isn’t just for radicals and recreation, and lower speed limits make sense: they protect and enhance quality of city life. In Oslo, for example, where cars move slowly, an easy sharing of space takes place.”
New York City began a Vision Zero project four years ago to positive results:
”Traffic fatalities in New York, which launched its Vision Zero program in 2014, fell for three successive years through 2016,” reports The Star. “Traffic deaths in that period declined 23 per cent (this includes all traffic deaths, not just pedestrians.)
“That decrease came with a considerably larger investment than in Toronto.”
It is clear that slower speed limits, bike lanes, extending pedestrian crossing times, safety zones and, I would add, enforcing statutes against distracted driving (read smart phone use while driving) would go a long way toward reducing the number of traffic deaths.
Some years ago, my block association in Manhattan petitioned the city to extend the crosswalk time at one of the corners in our area because there were a lot of old people in the neighborhood who could not make it across the busy avenue in the time allotted.
It took us more than a year of petitions, meeting with city council representatives, phone calls, followups and more but we kept at it and eventually the city increased the crosswalk time.
You can do this too. We have an election coming up in November that beyond votes for federal senators and representatives, local offices are on ballots.
Between now and then, you could contact local officials and candidates with your suggestions for making the streets safer for old people in your community. Start a petition. Get neighbors involved. Make phone calls. Attend town halls. Make a calendar of activities to campaign for safer streets and stick to it.
And remember, one of the strongest arguments you have is that anything good for old people in a community is always good for everyone else too.
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Here is latest episode of The Alex and Ronni Show.
At the bottom of today's story is the latest episode of The Alex and Ronni Show. Some of the conversation relates to this post and - god help us, there's more kitty talk.
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On this date a year ago, I spent 12 hours under anesthesia while a surgeon and his many associates in that room poked around in my wide-open torso removing and/or rearranging several organs or parts thereof with the goal of saving my life.
Here is what I looked like directly after they stapled me back together and then carefully watched over me until I was allowed to go home 11 days later.
My friend and health care proxy Autumn Schoen, who traveled from New Jersey to be with me that week, took the photo at my request – I wanted to know what I looked like after such a formidable and frightening procedure. (Thank god they put you to sleep.)
If you recall, Autumn also did an terrific job of keeping you up to date on my progress with her blog posts (here, here and here) until I could write them again myself.
What the surgeons did that day is called the Whipple Procedure, also known as a pancreaticoduodenectomy. (Yeah, just try to pronounce that.)
Although the surgeon had pulled no punches explaining how difficult it would be for me, particularly the recovery, I still was not prepared for how awful the first couple of months turned out to be.
Getting through that period is the hardest thing I've ever done. Nothing in my life comes close. Many mornings I seriously wished I had rejected the surgery and just let myself die.
Slowly, however, it got better. Before the surgery, I had stocked up on frozen foods since I knew I wouldn't be able to cook for awhile. Friends and neighbors generously shopped for me, cleaned Ollie the cat's litter box, took out the trash, drove me to medical appointments and that's just the daily, practical stuff.
They also were there with moral support through those first couple of hard months and the entire year following, too, as I gradually improved. Except for a couple of remaining small issues, I have designated myself 95 percent recovered.
Even better, several tests over the past five months show I am free of cancer, the doctors say. Since it's pancreatic cancer we're talking about and hardly anyone survives even a year, I must have been Mother Teresa in a past life to have gotten this far.
“This definitely is a grace – defined by Christians as an unearned, unmerited, undeserved favor from god. If like me, god is a tricky concept for you, think of it as the same kind of gift but from the universe.”
It is impossible for me to properly express my gratitude not only to those friends and neighbors who helped at home but to the dozens of doctors, nurses, technicians and the many other kinds of care givers and helpers at Oregon Health & Science University (OHSU) who have been there every step of the way with their unfailing knowledge, expertise, compassion, understanding, encouragement and kindness.
Getting to where I am, however, is not like healing a broken leg - finished and done with after six weeks or so. I am acutely aware that the cancer can return and often does, and that's not easy to live with.
Until a year ago, even with my long-term annoyance at television and radio commercials for prescription drugs, I had no idea how frequent and frightening cancer “cure” commercials are. I don't suppose it occurred to me, pre-diagnosis, that they could apply to my circumstance. That's different now.
These days, I am incapable of ignoring them and cannot bear to hear them. As a result, I have become masterly swift at hitting the mute button when those adverts appear.
Surely I've mentioned several times over this past year that the last thing I have wanted is to become a professional patient. Ha! How naive of me.
Nobody can take up to 20 pills a day, count them out weekly into their little container compartments, keep up with refills so not to run out (somehow, they never need replenishing on the same day or week) and not be reminded several times a day that you will always be a patient now.
I've tried to make jokes about how my doctors, lab attendants, nurses and others at OHSU are now the major part of my social life but it's actually not a joke – I see some of them more frequently than friends and in fact, some have become friends of a kind I don't have a word for. But it is a good thing.
So I've had to make peace with being a professional patient. And I'm getting good at it. When I gave a doctor the daily notes I had made over several weeks tracking the internal bleed (now fixed), he said, “I wish all our patients made lists like this for us.”
Until the cancer diagnosis, I had lived a remarkably healthy life for 75-odd years. The worst that happened was a bad flu every few years and I didn't give my well-being much thought beyond keeping up with exercise fairly regularly and relatively healthy food.
But I'm a different person now. I am not as comfortable in my skin, nor in my mind and I no longer trust my body. Too often a minor pain or twitch leaves me asking myself if it's cancer-related. I need to gird myself before checking each new set of test results online.
When I'm tired toward the end of each day – which is still much earlier in the afternoon than before all this happened - my thoughts turn dark. My more rational self tells me to let it go, just live, enjoy this extra time I've been given and I'm usually able to do that. Until next time, and then I start over.
I don't yet understand the consequences of the changes that have come over me. So much of this year has been – and still is - taken up with the busy-ness of having – or, having had - a terrible disease that there is not always time for usual tasks, let alone complex reflection.
But now that I am better, maybe I can devote some thought to how I am different and what, if anything, it means.
You're reading all this today because so many of you have been here throughout this long, strange trip and because today is a milestone, an anniversary of consequence in my life.
Before writing today's post, I re-read every “cancer post” I've written along with every comment from you, dear readers. You, collectively, have been my daily rock with your constant and continuing support, encouragement and kind responses.
I thank you from the bottom of my heart.
Now, on to the second anniversary.
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Here is latest episode of The Alex and Ronni Show.