Surviving to live another day

It started innocently enough: I was complaining about being short of breath at a dinner party. Several physicians were at the table; one suggested that it might be possible to increase lung capacity by doing exercises with a spirometer. “I’m not a pulmonologist,” he said, “so I don’t know; it’s just a thought.”

Incentive_spirometer

The thought was planted. I fired off an email to my primary care physician (we love Kaiser Permanente) asking if she knew of such a thing, and/or might refer me to someone to give it a try. She replied with a request that I come into the office so she could evaluate me. Well, grump, grump; all I wanted was a quick fix, but anyway. It takes all of about 10 minutes to get to the Kaiser Medical Center. I arrived for an 11 AM appointment.

The good Dr. Tang patiently explained that she did not prescribe via email. And because it had been 2 or 3 years since we last examined the heart/lung situation she would like to do another work-up, to see about this shortness of breath business. She went very lightly on the issue of my being 83 years old for heavens sakes, although she did mention she had 60-ish patients in worse shape than I. (This is a compliment, coming from one’s physician whom one reminds of her mother, although I was still looking for some magic way to walk uphill without having to stop and catch my breath.)

She then ordered a zillion blood tests, an EKG and a chest X-ray. Still grumping a little, I set out for all these, vowing that if even the smallest of lines appeared I would just come do it all another day. It took me roughly 3 minutes to get in for the EKG, less for the X-ray, and when I got down one more floor to the lab and pulled ticket #372 the automated voice was already saying “Now serving #372 at Station #4.” After dutifully following all these instructions, I went home to take a nap.

Within an hour, a voice mail message arrived from my doctor. “Your tests are fine, I don’t want to alarm you. But I’d like for you to come back in right away. Just tell the front desk you’re here.” Alarmed, I set out for the Medical Center once again. Lung cancer. Definitely. A spot on the lung showed up on the X-ray, and I will definitely die of lunch cancer in the immediate future. fear

Fortunately, the 10-minute drive didn’t allow too much time to contemplate my impending demise. “No, your X-ray is fine!,” she said. “Your lungs are fine! It’s just this one test that came back pretty high. It’s a screening test for possible blood clot. These tests are set very high because we don’t want to miss anything. Still, I want to be sure there’s no clot there that could indicate a pulmonary embolism causing your shortness of breath.” OK, I prefer not to have clots floating around in my bloodstream.

So does Dr. Tang. Whereupon she ordered a CT scan – which meant walking uphill a block to the hospital where they have those fancy machines (and radiologists to read what the machines report.) “Once you’re done,” she said, “come back to the office and as soon as we have the results we can talk about them.” I set out on the brief uphill walk. Pulmonary embolism. Definitely. Isn’t that what did in my mother at age 70? Embolism, aneurism, something blood-clotty. I’ll probably die of pulmonary embolism before I get back down this hill.Grim reaper

It is now close enough to closing time that most Kaiser people are closing up. But the CT scan people wait for me, hook me up to the dye thing and run me back and forth through the machine. I walk back downhill, mildly optimistic because nobody gasped while I was getting dressed in the cubicle several feet from the scan people. With nobody now at the receptionist desk, I walk into the nursing/examining room area and tell a smiling nurse that I’ll be outside if Dr. Tang needs me. And sure enough, in another 5 minutes – not enough time to consider calling the crematorium – she comes bursting through the door saying she’s so glad I waited.

“As I said, these screens are set very high so that we don’t miss anything,” she begins. “In your case, there was nothing to miss. It was just a false positive.” I exhale. We talk briefly about how I might increase my exercise regimen if possible – which might even address the shortness of breath issue; I concede that I am, indeed, 83.

On the way home, no longer planning to die in the immediate future, I count the cost: six hours, several hundred dollars co-pay. And I give thanks for our Kaiser membership, modern medical technology and my good doctor.

happiness

 

 

Making All Knowledge Available to All? For Free? Believe It

Universal Access to All Knowledge. In other words, let’s gather up and digitize everything on the internet, and offer it to everyone on the planet. For free. Every book in every library, every website, movie – oh, and throw in music: vinyl records, CDs. In as many languages as possible.

archive-crowd

Some people were doubtful this could be done. But then, they probably didn’t know Brewster Kahle. Kahle, according to his Wikipedia page, is an American computer engineer, Internet entrepreneur and internet activist. And perhaps foremost, he is an advocate of universal access to all knowledge – to which end he founded the Internet Archive in 1996.

The Archive, consisting of a few billion items – it could be a few trillion by this writing – is now a non-profit library recognized by the Library of Congress. If you’re a human being with a digital device you can access anything within its collections. These are grouped within recognizable categories like ‘Old Time Radio,’ ‘Iraq War’ or ‘Television,’ and enigmatic other categories like ‘Electric Sheep’ and ‘Netlabels.’

This writer, whose left brain is minuscule, was only dimly aware of the Archive, despite the fact that some years ago it purchased, for its headquarters, a former Christian Science Church building in San Francisco which I pass every few days. But when Kahle’s wife Mary Austin, co-founder of San Francisco Center for the Book and someone (decidedly right/left brained) I am proud to call a friend, insisted I attend the 20th anniversary celebration not long ago, it seemed time to peek into it all.

archive-taco-truck

A few hundred friends and supporters turned out for the celebration, stopping by the taco truck at the front steps and going from there to stations offering demonstrations of archived music and video games, planetary digitizations, scanners that put books onto digital shelves in a matter of moments. Many of the Archive employees who work from areas around the globe – this writer talked at length with a sharp young lady from Toronto – were on hand to help explain things, and enjoy the reunion. The Wayback Machine (more than 279 billion web pages saved over time) was a crowd favorite, as was the Live Music archive (6,991 collections: rock, blues, classics, big band . . .) Some of those last were comprehensible to this reporter; other areas where the beeps and blinks of giant servers and assorted machines were connecting us all to the digital universe – well, what can I say?archive-scanner

But I have my library card! Open Library: We lend e-books worldwide for free. You can get one for yourself. Open Library has over a million ebook titles.

You might also want to support this ambitious undertaking and its latest safeguard project: creating a copy of Internet Archive’s digital collections in another country. Kahle and friends are building the Internet Archive of Canada “because lots of copies keeps stuff.” In other words, one more assurance of universal access to all knowledge. Free. And private. Internet Archive does not accept ads (which could track your behavior) or collect your IP address.archive-planets

Fact-check it out.

Windows 10: A Horror Story

laptop computer crash

If you work on a PC that’s been around since last summer or longer, you know the relentless, obnoxious, uninvited pop-up boxes urging you to upgrade to Windows 10. Its hype has been such that you’d think Windows 10 includes an app for getting the Israelis talking to the Palestinians.

Downloader beware.

The upgrade message assures you that all of your files will be just where you left them. It’s easy, convenient, and free for a limited time! Plus, if you don’t like it, Windows 10 creates recovery files that allow you to roll back to your previous operating system any time within 30 days. Don’t believe it.

I wonder what in the world is in this good free deal for Microsoft? Could it perhaps translate into big bucks for Microsoft; i.e. Bill Gates and a few key employees and investors?

Windows 10 has its fans. Three of them are smart, computer-literate friends of mine who (along with several others) convinced me it would be wise to upgrade. Because, they argued, Microsoft will be discontinuing support for my old familiar Windows 7, and unless I upgrade I will miss out on ongoing security measures, etc.

Here is my experience. It is admittedly anecdotal, but throughout the past hellish week nearly a dozen friends have shared their own Windows 10 horror stories, including two who said it was downloaded without their request or consent. (Occasional pop-ups say Windows 10 will be installed in X-number of hours, and unless you catch it and specifically decline by checking three different boxes, it’s a done deal.) I admit to voluntarily signing on.

So at 2 AM on a recent Tuesday morning Windows 10 was downloaded onto my beloved four-year-old Lenovo ThinkPad laptop. At approximately 8 AM I entered digital purgatory.

For a few brief moments I enjoyed the crisp new look. Then I realized I could not access the two critical elements of computerdom on which my day depends: email, and Word documents. Not to worry. I’m only a few minutes away from the charming and super-capable Geek Squad folks at a nearby electronics place. I hereby salute & applaud my local Geek Squad. It took several exhausting hours – mainly because I tried to work with someone in Bangladesh who couldn’t restore my email – but the Geeks found my Word documents and a way I could send & receive email, even if files, address book etc were lost in cyberspace.

Two hours later it was all gone. Windows 10 was back in control, and denying access to anything. The next two days were essentially devoted to repeated trips to the Microsoft Store, where assorted other charming and super-capable geek types attempted to get Windows 10 the heck off of my weary laptop and roll things back to Windows 7. They could not. The only thing that eventually saved my life and laptop was a long ago purchase (and thank heavens for the auto-renew!) of Carbonite, which kept a copy of everything on my computer somewhere in its mysterious cloud. It took two straight days, but eventually I was back to where I was before the nightmare started.

Here is what Microsoft doesn’t tell you:

Your computer may NOT be compatible with Windows 10.

If you attempt to upgrade using the link furnished with the ubiquitous pop-up, the installation may not be “clean.” (This is what happened with my laptop; Windows 10 was sort-of installed, but not properly.) And you cannot simply re-install – or simply anything for that matter. So if you want to join the ranks of the Windows 10 fans, find a safe way to do so. Probably going to a Microsoft Store makes the best sense. The people at my local Microsoft Store were courteous and competent. They also kept bringing me bottles of cold water; I think they feared having a little old lady suffering a heart attack on their hands.

Your files may indeed be exactly where you left them (as you are repeatedly told,) but you may not be able to access them.

If you have a good anti-virus protection, you can get along just fine without whatever new security features my friends feared I would need.

And as for those “recovery files that allow you to roll back to your previous system within 30 days,” don’t count on it. I invested $149 in a package deal at the Microsoft Store so this could be done, but after two agonizing days of repeated trips we all conceded that the only hope was in the Carbonite cloud. If you really want to preserve the option of rolling back to your previous system, put every single piece of it into a cloud or onto a few flash drives.

Or buy a new PC and start from scratch. This I am doing with the nifty little Asus tablet the Microsoft Store folks set me up with so I could work during Hell Week. Of course by the end of the week I was loving it, so am spending the $300 to keep it for traveling. But I don’t expect to be able to do anything but the most rudimentary tasks on it for a very, very long time.

In the meantime I will be studying my brand new, 325-page Windows 10 for Seniors For Dummies. And I’m adding my Asus to my Carbonite account.

 

Dying On Your Own Terms

Mileva Lewis with the author

Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

Celebrating the Iran Nuclear Deal

nuclear cloudsThe mood was sheer celebration. “We’ve moved the boulder in the road,” said Joe Cirincione; “this model can be useful for other work.” Moving the boulder, a distinguished group of speakers repeatedly explained to the small, celebratory-mood audience, will lead to a safer world for our children and grandchildren, a world “where nuclear weapons are a thing of the past.” He was speaking of the Iran nuclear deal.

The Iran deal – the Joint Comprehensive Plan of Action signed in Vienna on July 14 by the U.S., Iran, China, Russia, U.K., France, Germany and representatives of the E.U. – runs to approximately 159 pages, very few of which this right-brained writer has read. But I absolutely trust Joe Cirincione.

Cirincione is president of Ploughshares Fund, a nonprofit that works to bring about a world in which our children and grandchildren might live without the threat of being blown to bits by a nuclear bomb. A really attractive idea. (Ploughshares Fund was founded in 1981 by Sally Lilienthal, a remarkable San Francisco woman this writer was privileged to know in the decade before her death in 2006.) It was at a small gathering of Ploughshares supporters that Cirincione and several others – who have not only read the entire 159 pages, but helped write them – explained the details, and the impact, of the Iran deal to us, our grandchildren, and the world.

Many of the details are beyond the technical comprehension of most lay citizens (and more than a few of the politicians whose knee-jerk opposition has little to do with the safety of our future.) They include things like requiring that Iran reduce its 20,000 centrifuges, which are used to enrich uranium, to 6,104 over the next 10 years, giving up its most advanced centrifuges while using only their older model. Then there is the business of how far the country will be allowed to enrich uranium: no more than 3.67 percent, which will be okay for power plants but is far below the level needed for weapons. Iran also agreed to reduce its stockpile of uranium by 98 percent.dove of peace

These extraordinarily complex details were part of a conversation between Cirincione and Kelsey Davenport, Director for Nonproliferation Policy, Arms Control Association at the event. Davenport was among the outside experts traveling to Geneva, Vienna and elsewhere to help work out the agreement – “and knows more about the Iran deal than anyone I know,” Cirincione remarked, and spoke of the long, often painful path toward its success. Davenport said she could usually tell right away how some negotiation went – discussions that often ran into the small hours of the morning – by the expression on someone’s face.

We should all be smiling today.

 

 

 

Holding Silvan: A tale of loss and love

The new mother’s worst nightmare came in shards of bewildering words: “subdural hematoma… basal ganglia… thalami…sagittal sinus…” And the terrible eventual diagnosis: “severe hypoxic ischemic encephalopathy.”

 Monica Wesolowska

Monica Wesolowska

Once they had processed the meaning of it all – that their beautiful baby had no functional brain, no hope for a life, Monica Wesolowska and her husband David made the hardest decision ever required of parents, to let their infant son die. It was a decision complicated by advanced medical technology, a world into which the family was swept up, and by the wrenching physical, emotional and moral issues. But the two grieving parents clung fiercely to the conviction that they were choosing what was best for their son, and to the determination that for whatever time he had they would give him comfort, care and abundant love.

Wesolowska tells this tale with unflinching honesty in Holding Silvan: A Brief Life, a small book that manages to keep the reader mesmerized with what is ultimately a story of courage and, above all, life. She spoke with this writer recently about the book, and those days.

“I wanted and needed to write it,” Wesolowska says, in response to a question about whether the writing was therapeutic. “I felt very fortunate to be able to spend time remembering Silvan. Also, to revisit the time, do research…” Years later, both the experience and the firstborn son are integral to Wesolowska’s life; in the days and weeks after Silvan’s birth there was time only to struggle with the issues at hand. It is the immediacy of this struggle, overlaid with the love that surrounded Silvan as he died, that holds the reader.

After publication, we asked, did Wesolowska get negative feedback? “I was surprised at how little,” she says. “In part, I think it was because so few people want to read a book about the loss of a baby. A few heartening back-and-forths, when people came around. But the most difficult (discussions) are with parents of brain-damaged children. It turns out that what they’re dealing with is much less extreme (damage.)” In such cases Wesolowska tries to communicate the singularity of the choice she and David made. “My goodness, I would never suggest a child with disabilities is not absolutely loveable. I’m not here to judge the difference of your love.”

Holding Silvan coverThere were helpful and unhelpful things that people said and did as Silvan was dying and in the aftermath. The best, Wesolowska says, “were the people who told me I was a good mother. What I was going through was motherhood, and a deep love. The hardest to take were when people said ‘Why didn’t you let him die a different way,’ or ‘How can you be so certain?’”

No one, though, tried to talk them out of their decision. In their Berkeley, CA area, “We were in a kind of liberal bubble,” she says. “But we really struggled toward the end. Legally, it was frightening.”

For all the fear, tragedy and loss, Holding Silvan is surprisingly uplifting. And, Spoiler Alert: there is a happy ending.

 

Want to put your brain to good use?

child Head

(Part Two of Data Today – Better Tomorrow)

Could this be you? Creating a better tomorrow through brain research??

It turns out one does not have to be a pro football linebacker to have a brain worth studying. One does not even need to have a brain like Albert Einstein’s, Steven Hawking’s or any of those scientists/exceptionalists/geniuses whose brains would seem worth figuring out.

One only needs to be 18 or over and willing to be studied, and then to go sign up on the Brain Health Registry. This entitles you to sit back and wait for your brain to help discover a cure for Alzheimer’s or ADHD or depression, or perhaps help find better ways to treat traumatic brain injury. Not bad, for just having a brain and investing a little time (no money.)

This writer got off to a sluggish start as a Brain Health Registry member. Signed up early on because it sounds like such a great endeavor, but then I ran into a few off-putting instructions like “This will take about 20 minutes. It is best done in a quiet room where there will be no distractions or interruptions.” Twenty minutes, quiet rooms and absence of distractions are three things hard to come by around my house.

Eventually, however, the requisite conditions were found, and I was off to create a better tomorrow – well, in partnership with a few thousand other participants and some very smart neuroscientists – by finding out stuff about the human brain. And this is one fascinating journey. The neuroscientists find it fascinating because they really are going to figure stuff out. But for participants, the fascination is in the process.

Participants enter a little basic, very general data about medical/family history etc. Then the fun begins. We have two sets of ‘Cognition’ tests aimed at assessing our memory, attention and other cognitive characteristics. “These tests give us a sense of how your brain is currently functioning,” the screen says. This participant can only wonder what the Brain Health assessment people think about how her brain is functioning. The ‘Cognition’ tests are computer games on steroids. For a while you try to remember and replicate the pattern of dots, and then you go to the card games. The card games require Yes or No answers about what the cards are doing, press D for Yes and K for No. My brain kept trying to tell me what the cards were doing, while my fingers tried to remember that K was not for Yes.

It is, all in all, a lot more fun that the computer games the rest of the world is playing.

In another three to six months, the BHR people will be reminding me to go back and do it again, or do something else, to see how the brain is getting along. Perhaps they will flag my entry and advise me to check myself into an institution. But more likely they will just combine my data with the data of a zillion more or less anonymous others – and find a cure for Alzheimer’s! Or depression! Or improvements in treatment of traumatic brain injuries! All with the help of my weary, aging brain. Plus, when the survey was completed I got an email from UCSF professor Michael Weiner, MD telling me I am a medical hero. “You’re helping to make brain research faster, better and less expensive – and ultimately that gets us closer to a cure for Alzheimer’s, Parkinson’s, and other brain disorders that strike tens of millions of Americans every year.” Who could resist?

You may want to go straight over to the Brain Health Registry and join the fun.