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.
* * *
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.
* * *
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.
* * *
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.
* * *
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.
* * *
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.
EDITORIAL NOTE:At the bottom of this post is the latest episode of The Alex and Ronni Show - a now-and-then conversation between me, the proprietor of Time Goes By, and my former husband, Alex Bennett. Today's topic is cats. But first, I want to tell you about one of the best books of the year.
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John Leland, an exceptional reporter, joined The New York Times in 2000 and has been covering retirement and religion for the paper since 2004.
In 2015, The Times published Leland's year-long series, “85 and Up” about six of the oldest old living in New York City, all age 85 or older. I was hooked with his introduction which reads in part:
”Early this year, I began visiting these six elders, asking simple questions about their lives. What gets them going in the mornings? What are their aspirations, their concessions to age? Do they want to live to 100? Without the daily drumbeat of work or family responsibilities, where do they find meaning and purpose?
“What they shared, each in a different way, was a story of abrupt change — the loss of a spouse or a home, a sudden turn in health, the arrival of new love, the pain that signals only more pain to come...
“They buried brothers, sisters, parents, children, peers. They lived through the Depression, World War II, Nazi labor camps and the AIDS epidemic, but now they often find themselves with no one to listen to their memories.
“Few ever expected to be so old. None had a formula for how to do it.
“Their lives are a New York soap opera, unscripted.”
“These people totally changed my life. They’ve given up distractions that make us do stupid things and instead focus on what’s important to them.
“To a person, they don’t worry about things that might happen. They worry when it happens, and even then they don’t worry. They just deal with it.
“At whatever age we are, we can choose to adapt to whatever happens. We have influence over whether we let things knock us out.”
These six elders are a good cross-section of humanity at any age: an African-American man who is a veteran of World War II, a gay man whose partner of 60 years had died six years previously, a Chinese woman who maintains her social connections playing mahjong, a woman who found a new boyfriend in the retirement home where she lives and a well-known film director.
After repeated visits with each of his subjects over a year's time, Leland put together an extraordinarily informative and poignant story about – ahem, “what it's really like to get old” (see this blog's subtitle in the banner).
As he told host Terri Gross recently on her NPR radio program, Fresh Air, before this series, he was afraid of old age and sometimes still is:
”...when I started doing this series, I'd set out to - what one of the people I talked to calls - rewriting the Book of Job and doing a story on how this is terrible about aging.
“And you fall down, and you break your hip, and then it's all over. And you lose your eyesight, and then your friends all die, and then it's over. And your heart stops working. And you don't have sex anymore. And you don't work. And you don't have anything that gives you purpose. So now, it's all over.
“And that's what I thought old age was. But then you spend time with people, and a lot of that stuff is a part of their lives in old age but in no case was it how they defined themselves. So I wasn't getting it - what the truth about their lives was as they saw it.”
You can listen to Terry Gross's entire interview with John Leland, or you can read the transcript of their conversation here.
In January this year, a book based on Leland's conversations with the six elders was published. Happiness Is a Choice You Make: Lessons from a Year Among the Oldest Old, received near-unanimous rave reviews.
In this short video from PBS NewsHour in March, Leland explains that learning how to think about death from his elder subjects changed how he lives:
During the past 20-odd years I've read hundreds of books on just about every aspect of growing old. There is a lot of dreck among the good ones but none has captured what it's really like to be old with such campassion, empathy, humor, genuine interest and, eventually, understanding as Leland does.
That happened because above all else, he is an excellent reporter who took the time to listen carefully and, as he says, “let them guide me through the world as they saw it."
Given all the age-related reading I do, you'd think I pretty well have the subject covered and to a degree, I do. But John Leland opened my eyes, my thoughts and my imagination to a good deal more than I have considered before. Books like Leland's don't come around every day.
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Here is the latest episode of The Alex and Ronni Show recorded on Tuesday 22 May 2018.
The latest episode of The Alex and Ronni Show is at the bottom of this post.
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As noted here in the past, until I was diagnosed with pancreatic cancer nearly a year ago, I was lucky enough to be disgustingly healthy.
There were colds and other minor ailments now and then but nothing that kept me down and out for long, nothing that left me with permanent changes to my capabilities.
Not so much anymore. Yes, the doctors say I am now cancer free (whew!) but recovery from the Whipple surgery lasted many months, chemotherapy took its toll on my energy, I had to slack off workouts for too long and recent hospital stays for internal bleeding, a blood clot, placement of a stent, etc. haven't helped.
The bottom line is that everything – everything takes longer than it once did. Yes, yes, I know: just getting older, even without any health difficulties, slows down everyone. Bodies wear out, muscles don't work as efficiently, we tire more easily.
But until this bump in my personal road of life, slowing down wasn't an issue. As far as I could tell, I walked as fast as I always had and particularly after I lost more than 50 pounds some years ago, I could blast through housekeeping chores leaving plenty of time for whatever other plans I had.
When we get old, I think we understand as never before that our greatest gift is time. Each day now is precious and anything boring that takes up any of that time is stealing hours – even days, cumulatively - from us.
Here are some of the new tasks that eat up even more of my time than a year ago:
• Tracking daily medications, keeping the chart up to date as doctors change meds, getting refills on time and filling the pill holders (plural!)
• Actually remembering to take the pills at the right times of day (Post-it notes are my friends)
• Arranging other events in life around medical visits
• Keeping daily records of health information for the physicians
• Napping (a lot recently) when my body tells me to stop for awhile
• Tracking the cat's medications and trying to get pills down his throat when he would rather shred my skin than swallow.
And those are only some time eaters I can identify. Mysteries abound, such as this one: I thought I could vacuum the entire apartment in 30 minutes. So why does the clock say an hour has passed when I'm finished?
Or why does changing the beds seems so much harder – and therefore slower – than it used to be?
There is only one solution to this time annoyance – something many of you identified last week in that marvelously wise and interesting discussion about aspects of growing old: acceptance.
As Anne said on that post:
”Having just turned 78, maybe I should accept this and live at the tempo I can manage.”
I am not any good at all at this kind of acceptance. You?
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Here is the latest episode of The Alex and Ronni Show recorded on Monday 7 May 2018.
We are here to fix those problems today but first:
EDITORIAL NOTE:Unless you have one or the other or both of this difficulties with using Time Goes By, this post will you put you straight to sleep so I've included a bonus at the end: The latest edition of The Alex and Ronni Show recorded yesterday.
For readers who want or need this housekeeping post, there is still the bonus for you too when you get to the bottom of the page.
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HAS TGB STOPPED ARRIVING IN YOUR INBOX?
If you receive Time Goes By via email from FeedBLITZ or via Facebook, Twitter or just visit the website in your browser), you can skip this part. This is for people who subscribe to TGB via FeedBURNER.
As one techie explained to me a while back, some years ago Google, which owns FeedBURNER, stopped supporting FeedBURNER. Since then, Google has not updated the service, not added or improved features and most important, has not fixed bugs nor replied to support requests.
So sometimes the service works for some people or it doesn't or it eventually breaks and Time Goes By does not arrive or the reader gets an announcement with the FeedBLITZ logo that FeedBURNER has run into a problem.
This means it is time to switch to the FeedBLITZ subscription.
Some back-end adjustments to the feed have now been made that may help, but to be certain of receiving the feeds (which go out in the mornings, Pacific time, each day except Tuesdays and Thursdays), you can resubscribe as follows:
HOW TO RECEIVE TIME GOES BY VIA RELIABLE FEEDBLITZ EMAIL
In the upper right corner of every Time Goes By page is a subscription form.
There are choices for Facebook and for Twitter if you prefer to read the blog on one of those platforms, although I rarely check in at either of them so hardly every see comments.
If, instead, you want to receive blog posts automatically in your inbox, just enter your email address in the form and click the word, Subscribe. FeedBLITZ will send you a confirmation email, follow those instructions and then you are signed up. Nothing more to do. It is that simple.
ARE YOU HAVING TROUBLE LEAVING A COMMENT?
Some readers report difficulties with commenting. This issue is mostly exclusive to people who subscribe via email so let me explain.
The problem always involves the user clicking the word Reply in their email program. That has nothing to do with commenting. It works exactly like any email you answer – it goes to the sender which, in this case, is FeedBLITZ which supplies a copy to my email address.
(Obviously it follows that when you click Reply and write a reponse, no TGB readers can read it – only I receive it just like any other email.)
COMMENTS MAY BE MADE ONLY AT THE WEBSITE, not via email. Here is how to do that:
Click the headline at the top of the day's story in your email. It will open in your browser. Alternately, you can scroll to the bottom of the story in your email program and click the link supplied there to go to the story in your browser.
To comment, scroll to the bottom of the story in your browser and click on the word Comments in the footer.
The story reopens in a page with a form for your comment. (If there are comments left before you got there, you will need to scroll down to the bottom of the list of comments to find the entry box.) Type your comment in the box.
Enter your name or any alias, nickname, etc. you want to use. Enter a functional email address – it is for security purposes only and is not published. If you have a blog (that is not a commercial or retail website), enter the URL and your name will become a link to your site, if you wish. Or you can leave that entry box empty.
You can Preview your comment by clicking that button and/or click Post. The page will refresh and your comment will appear at the bottom of the list of comments.
Remember: DO NOT CLICK REPLY IN YOUR EMAIL TO LEAVE A COMMENT. You must go to the website to have your say.
FYI, I switched the TGB email feed from FeedBURNER to FeedBLITZ a few years ago when Google announced it would no longer support FeedBURNER.
FeedBLITZ is a paid service for which I put out big bucks every year. In fact, they just charged my credit card for 2018.
So please, if necessary, make the switch to FeedBLITZ. It will save me hours answering your emails individually and also, I don't like wasting my money (actually, your money if you participated in the donation drive in February).
FeedBLITZ is good service. In all my years with them, there has not been a glitch and they have always answered my support questions within an hour. They are well worth the expense so please take advantage of it.
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Here is the latest episode of The Alex and Ronni Show.
At the bottom of this page is the latest edition of The Alex and Ronni Show – a conversation between me and my former husband, Alex Bennett, that we recorded on Tuesday.
Early in the recording, Alex (who lives in New York City) asked about Oregon's Death With Dignity Act – that is, physician-assisted suicide – and as serendipity sometimes has it, later that day as I was looking around the web, a documentary about an Oregon married couple's choice to die together in this way turned up.
Living and Dying: A Love Story is powerful and poignant, sad and uplifting and by the end, you know this couple, Charlie and Francie Emerick, made the right choice for them.
The couple's daughter, Sher Safran and her husband, Rob, asked permission to record her parents' final days and hours, and also gained their approval to share the video publicly.
Both Charlie and Francie had been diagnosed with less than six months to live and they are thought to be the only couple to take the drugs together. Kaiser Health News (KNH) reports,
”The pair, early members of the 1980s-era Hemlock Society, had supported the choice for years, and, when their illnesses worsened, they were grateful to have the option for themselves, family members said.
“'This had always been their intention,'” said [another] daughter Jerilyn Marler, 66, who was the couple’s primary caretaker in recent years. 'If there was a way they could manage their own deaths, they would do it.'”
And so they did, taking the state-prescribed medication together on 20 April 2017. Kaiser Health News again:
Francie, 88, went first, within 15 minutes, a testament to the state of her badly weakened heart. Charlie, 87, a respected ear, nose and throat physician, died an hour later, ending a long struggle that included prostate cancer and Parkinson’s disease diagnosed in 2012.
“'They had no regrets, no unfinished business,' said Sher Safran, 62, one of the pair’s three grown daughters. 'It felt like their time, and it meant so much to know they were together.'”
But that is only the bare bones of the story. Sher and Rob, using mostly cell phone video, have produced a remarkable record not only of her parents' long (66 years) and loving marriage, but of the procedure involved with using the Death With Dignity Law in Oregon that so many of us are curious about.
Here is a trailer from the Safrans' 45-minute documentary, Living and Dying: A Love Story.
You can see a short, 20-minute version of the documentary at the Safran's website, Share Wisdom Network, where the longer, full version is also available to view online. (Scroll down to get to them.)
It is astonishingly brave to make this choice of controlling one's death – choosing time and day and making preparations. I've always said that I want to die in my sleep although I'm told most people say this and that it doesn't happen often.
Physician-assisted suicide is, to me, a good alternative when you know there is no chance of recovery and that your life will become considerably more difficult and/or painful toward the end. I would hope, in that circumstance, I would make the decision Charlie and Francie Emerick did.
It surprised me to find that the first interview I did via Skype with my former husband Alex Bennett was published here way back last September. (Blame that damned time-goes-faster-as-you-get-older phenomenon.)
Ever since, Alex has been nudging me to do more of such chats and from my end, there never seemed to be time until earlier this week.
Below is the full interview, about 30 minutes. For the second time, we had audio sync difficulties - it appears to be a feature, not a bug, of Skype. Oh well.
NET NEUTALITY SET TO BITE THE DUST
As Federal Communications Commission (FCC) chairman Ajit Pai has been threatening since before he was appointed to that post, yesterday the agency filed its net neutrality revocation order in the Federal Register.
The ruling, misleadingly titled The Restoring Internet Freedom Order which can be found online here, goes into effect, if not stopped, on 23 April 2018.
A simple explanation of what that will mean to your internet life can be found here at TGB but even better is this easy, one-sentence explanation from Engadget:
”Net neutrality forced ISPs [internet service providers] to treat all content equally; without these rules in place, providers can charge more for certain types of content and can throttle access to specific websites as they see fit.”
So, for example, big rich companies could afford hefty fees to providers so their web pages arrive faster in your browser than – oh, let's say political groups that depend on donations or blogs like yours and mine that are throttled because they can't bear the increased cost.
Also, ISPs may offer new tiered systems of subscription where we, the users, could be required to choose websites and content based on the price we are willing or able to pay for a certain package level.
”One current practice that’s a sign of things to come is zero-rating, where internet providers offer free data when you use certain services. This sounds great on the surface (who wouldn’t want free data?), but it gives a huge advantage to the sites and services that the internet provider chooses to support.
“AT&T, for instance, offers free streaming of its own video services, like DirecTV Now, whereas subscribers still have to pay in order to stream Hulu. That means an AT&T customer may be more inclined to sign up for DirecTV than Hulu, which would make life harder for Hulu and other streaming video competitors.
“Over the long run, this could allow established tech and telecom giants to pick the services that win and lose, rather than having them all compete on an even playing field and letting consumers pick which they like better.”
Publication of the FCC order in the Federal Register is important because now, notes Reuters,
”...state attorneys general and advocacy groups will be able to sue in a bid to block the order from taking effect.”
”...the attorney general of New York is set to sue the FCC over the repeal of net neutrality, and more states and advocacy groups will follow.
“Democrats in the Senate have the votes to restore net neutrality (but not the two-thirds majority required to override the president's veto, which would surely follow any action on their part.)”
Most of the news coverage of this filing yesterday suggested it will be difficult if not impossible for Democrats in Congress to override Republican approval of the revocation order. Reuters again:
”Even if Democrats could win a majority in the Senate, a repeal would also require winning a vote in the House of Representatives, where Republicans hold a larger majority, and would still be subject to a likely veto by President Donald Trump.
“Democrats need 51 votes to win any proposal in the Republican-controlled Senate because Vice President Mike Pence can break any tie...
“The approval of Pai’s proposal by the FCC marked a victory for internet service providers like AT&T Inc, Comcast Corp and Verizon Communications Inc and hands them power over what content consumers can access.
“Earlier this month, technology companies including Alphabet Inc and Facebook Inc threw their weight behind the congressional bid to reverse the Trump administration’s plan to repeal Obama-era rules designed to protect an open internet.”
Do recall, everyone, that during the public comment period for this order, the FCC received more than a million fake comments supporting their proposed repeal of net neutrality.
Rather than investigate the false comments to get an honest count of the public's position, Chairman Pai ignored the intrusion and went forward with safeguarding the internet for corporations. (See this Salon story.)
Net neutrality is a consumer issue but it is also an important free speech issue. Because the internet has become indespensible for almost everything we do in life, it is crucial to individual wellbeing, support of the Constitution and equality.
From 1965 to 1971, I was married to Alex Bennett, a radio talk show host who now does an interview program on the internet and on Wednesday, he interviewed me.
This is a screen grab from the interview; I'm posting it because I don't like most photographs of me and I do like this one.
Below is the full interview, about 30 minutes. We recorded it with Skype and had trouble with the audio/video sync so my voice lags a bit; I hope it doesn't bother you too much. Plus, I know the length at the bottom of the video reads 1:56:36, but the video stops at 32.25 where my interview ends.
Something called Gulliver's Gate are creating miniatures of the world's most famous sites. Here is a short video about them from The New York Times 360 series. (Hold down your left mouse button and scroll around to view the images from other angles.)
You can see much more about the miniatures of Gulliver's Gate at the website.
As the Bored Panda site tell us, these are “bad-ass animals that won't follow your stupid rules” and it's really funny how they fool us humans. Two examples:
This second one needs a bit of explanation: Someone tried to fool a squid by putting it in front of a background that its camouflage can't possibly handle. No problem, said the squid, and just made itself transparent. So there!
You probably know most of the information in this video about what we should eat but I was interested in how each kind of nutrient affects our brains and, therefore, our bodies.
JEAN ROBERTSON ON HAVING A SOUTHERN ACCENT
Now be honest: all you northerners, like me, think that southern accents sound kind of funny and signal that the person speaking might be none too bright. We're wrong, of course, but it happens.
Here, then. is comedian Jean Robertson on how her southern accent went over in Lansing, Michigan:
FOR OLD PEOPLE ONLY
TGB's Sunday TGB musicologist, Peter Tibbles, sent this Nonsequiter cartoon:
ECO-FRIENDLY HOBBIT HOMES IN WALES
As the YouTube page explains:
In Pembrokeshire, Wales, the cutest, handmade houses have been popping up around the county. These wee homes, made of natural, locally sourced materials and scavenged bits from the surrounding countryside, embody low-impact living.
“What exactly does that mean? It means that the inhabitants who built these houses, like Simon and Jasmine Dale, grow and cultivate the vast majority of what they consume.
“The two have been living in their very own hobbit-sized house since 2003. And now, they're helping others build similar homes in the Lamma community—the country's first eco-village.
HOW WILL HISTORY JUDGE PRESIDENT TRUMP?
Six historians each take a whack at answering that question in the current issue of Vanity Fair.
It's a long read but worth your time plus the caricatures by Barry Blitt, Edward Sorel, Ross MacDonald, Darrow, Andre Carrilho and Steve Brodner are delightful. Here's one of them, by Carrilho:
Ryan and Lana Weimer celebrate Halloween all year round: The couple from Keizer, Oregon, runs a nonprofit called Magic Wheelchair which the two founded in early 2015 to build elaborate—and free—costumes for kids in wheelchairs.
Magic Wheelchair—which is funded by individual and corporate donors—relies on teams of local volunteers around the country who work together to build costumes for children in their communities. To be considered for a costume, families fill out an online application, which provides the nonprofit with a kid's biography and a description of their desired ensemble.
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.