Bet you didn’t see this one coming

April 12th, 2010

I had another life, and music was a big part of it.  Over the weekend, I watched the entire 25th Anniversary Rock and Roll Hall of Fame show on HBO.  (I think that’s the name, but y’know how things can get muddled.)  Most of my friends from that era are either dead, like Clarence Paul, or like Harvey Fuqua, they mysteriously vanish for periods of time, then reappear and say something like “What’s the big deal, I was right here.  Where were You?!!”  Since none of the people I would ordinarily have called are still “with us”, I’m throwing this out there.  If anyone has any comments, bring it:

Kuddos to Jann Wenner.  He’s not one of my favorite people – I watched him make a complete ass of himself backstage at the R&R Hall of Fame induction in 2000, when a guard wouldn’t let him through without a pass. (“Do you know who I am?”) But apparently he’s a very talented ass.

Wenner’s is the first name you see on the credits at the end of the show, and since the buck stops at the top, he gets a disproportionate amount of the credit — mainly because the list of names after Wenner went by too fast for me to read.  But I bet it contained every music maven in the the business.

The whole freakin’ show, including the way it was put together, was great.  And everybody looked thin, even Stevie.  (Okay, he wasn’t thin, but he wasn’t huge.)

I’m hitting just the highlights here:

Bonnie Raitt.  She killed!  She gets better as she gets older.  Would that that was true for everyone…

Stevie.  Here’s some background: in the old days of Motown, nobody wanted to follow Stevie on the stage, because he was just too powerful.  He left the audience drained, but in a good way.  And he took great pleasure in kicking ass onstage, partly to please the folks, but also to  dare anyone who followed him to upstage him.  So when Stevie’s segment started, I kind of expected him to phone it in, like he generally does these days.  Not this time.  He was fanTAStic!  And then he handed the mike to Smokey, with a big grin on his face that said, “Follow that!”  Smokey was good, but I bet he was thinking that was the last time he’d get on a stage after Stevie.

I’m not a fan of some of the acts on the show, but they fit the occasion.  Mick was great, as usual.  And who was that woman who sang the duet with him on “Gimmie Shelter?”  Someone thought it was Alicia Keyes.  Whoever she was, she was smokin’.

Jerry Lee Lewis, still amazing.  Sam Moore, nice to see him still hitting those notes.  Springsteen.  That man gives 150% to everything he does.  I didn’t listen to much rock and roll in the past, but now that rhythm and blues has been pulled under the R&R umbrella, I’m newly appreciating a lot of the music I never really got to hear before.  Better late than never.

The best thing was that everybody on the show could actually sing.  I wonder how much of the singing was cleaned up in the studio, because there were no mistakes, no bad notes, and that doesn’t usually happen in a show.  But those singers have chops.  Not like the so-called singers that come out of the studios these day, extruded like sausages, unable to do a live show if their career depended on it.

If anybody out there saw the show and has something to say, say it here.

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Denial ain’t so bad…

April 7th, 2010

Kathy LaTour, an editor at Cure Magazine, blogged recently about a story in The New York Times about a doctor who headed up a palliative care unit at a major healthcare facility, advising patients about their options, when they’re at the end of their options.  When the doctor in her realized she was dying, she went into complete denial.  I think I remember reading that she even knew she was doing it, and that was fine with her.

Reading that story was an “Aha!” moment for me.  That same degree of denial is, to a great extent, the reason I’m doing so well.  It’ll be five years in July that while taking a shower, I noticed my breast had a big dent in it; I knew I had cancer.  I was Stage 4, metastatic, with REALLY bad odds attached.  But I never had a single doubt that I was going to beat The Bastard.  I was so mad I didn’t have room for any other emotion.

Anger seems to have served me well.  I took a PET/CT this week, and I’m clean.

And I don’t think it’s coming back, either.  That’s what’s known as classic denial in the world of medicine, where statistics forecast how long we’re scheduled to live after diagnosis.

What that doctor did when The Bastard really put the grab on her, has given me a template for my future.  She showed me it can be done, you can keep going all the way until you can’t go another step.  You know on some level you’re dying, but you refuse to stop living, even adding more and more into your life — and all the while, fighting the fight of your life.

She drained every drop she could from life, before she let go.  I don’t know if you can consider a dead person a mentor, but I bow to her.  I’ve only known one person like that.  His name was Neil, and he was the love of my life.

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Facebook and MySpace

April 2nd, 2010

I’m a marketing person, I know the value of the social sites.  They connect people and, occasionally, ideas.  Still, it’s a personal choice of mine to spend as little time there, as possible.  Not saying they’re bad or good, this isn’t a value judgment.  I’m just very easily bored.  (Good thing there was no ADHD diagnosis when I was growing up, or I’d have been on every activity-moderating drug known to medicine.)

It bores me to know what everybody’s doing.  It requires reading really bad writing, to find out things I don’t really want to know.  And since I love to read good writing and my life is interesting enough, spending time in front of a screen has to have a pay-off.

If this elainejesmer.com turns into a universe for patients to get information about, or related to chemo, that they need – if everyone who blogs here with me starts adding their experiences and widening the range of information, that’s the payoff, the satisfaction I’ll get for helping people get through a difficult time in their lives.

I’m linking the blog with my Facebook and MySpace accounts in hopes that something will come of it that ISN’T boring.  Something that advances patients’ ability the access to information, for example.  You guys out there bringing your experiences to the table – that’s interesting.  This isn’t about me, it’s about us.

Meanwhile, if you want to find me, I’m here, not there…

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Test time

April 1st, 2010

The anxiety hasn’t kicked in yet, but I am thinking about it.  Next week, at pretty much exactly this time, the Pet/CT will be done and the results will have been sent to my oncologist.  (Funny, the bi-monthly blood tests don’t elicit the smallest measure of concern – even though cancer, mine anyway, probably shows it’s symptoms in the blood before the PET/CT picks it up.)  

The anxiety is still a few days away.  And from what I understand, it never, NEVER goes away completely.  My ex-sister-in-law had thyroid cancer 38 years ago.  It was treated successfully, there was never a reoccurrence.  And yet, every year when she goes to her doctor for the thyroid checkup, she thinks “What if?…”

It would be an act of total denial of the whole experience, if we didn’t get at least a little nervous.  From the time we hear “You’ve got…”, we know beyond a shadow of a doubt that life really does end.  Death isn’t theoretical anymore, it flashed it’s presence in real time – and we can avoid the issue all we want, but we can’t deny we saw it.

We lived to see it, is the point.  It’s still far enough down the road that we can push it to the back burner of our lives.  I’ve done that.  So on the almost-fifth-anniversary of my stage 4 diagnosis, I can’t help smile as I write this, because I have never felt better in my life.

And I’m old, to boot.  Go figure.

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More about nurses ..

March 30th, 2010

I do a monthly newsletter called “Chemotalk”.  My April issue is almost ready to go, but it was missing something.  I didn’t know what that was until I read an essay in today’s (3/30/10)  New York Times’ “Science Times”.  It’s by Theresa Brown, “…an oncology nurse and a regular contributor to the Well blog.”  I’m going to reproduce it word-for-word at the end of the column.

What Theresa says goes to the very core of why everybody loves nurses.  It’s why we love them even more than doctors, even doctors we love.  Nurses represent.  And it’s us, their patients, that they’re representing.  Whether or not you agree with Ms. Brown’s opinion, the thing you can’t miss is whose side she’s on.  That’s a remarkable quality, in the business world of healthcare.

I know a lot of nurses personally, but there’s something about oncology nurses that I can only describe as extra soulfulness.  They have to be able to stand the fact that some of us will be around for long enough to become friends of theirs, but they’ll be around to see some of us die.  That’s not easy to stand, but they stand it, and they help us stand it.  Ask an oncology nurse a question, and you better be ready for the answer, because these people shoot from the hip.  And they’re aces.

What we need are bumper stickers that say “Kiss Your Nurse Today”.

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Spam Stinks

March 29th, 2010

How they found me so fast, I can only guess.  I’m talking about the sex sites that Google the word “mammogram” and decide, “Okay…people reading that stuff are talking about breasts, and breasts = sex, so they’re probably gonna really want to look at some porn…”  That makes sense, right?

On the other side, some comments to these blogs are coming from people who deal with reality, and it’s not always a pretty one.  They seem to say this blog and the site are helpful.  That’s why I’m doing this.  So, for whatever it’s worth, at least I can make one promise I’m sure I can keep: no porn site is getting a free ride on this space.

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Changing minds to change politics

March 26th, 2010

A friend told me a story today that made start thinking how business-as-usual goes on because companies don’t appear to have the guts to risk change.  It’s oh-so-easy to keep those costs out of the public’s purview and pass them on to us, the consumers.  This goes for all businesses, but I’m concerned here with the mega-companies that rule the business of healthcare.

My friend’s daughter, a nurse, attended a dinner arranged by the people who run the corporation she works for that manages nursing homes.  Showing them a good time is one of the ways they woo doctors to refer patients to their facilities.  Taking them out for expensive dinners, for example.  The irony is, for the most part the patients that these doctors care for, are on public assistance.

Maybe my thinking is twisted, but the way corporations entertain clients, the way banks pay exorbitant bonuses to their overpaid executives, is one of the things making people so angry.  Even if we know what’s going on, what can we do about it?

We’re the ones who get the shaft when health insurance companies raise their rates 43%, calling it a matter of covering the rising costs of health care.  Never mind that it’s their practices raising … you get it.

When I heard that rate-hike announcement by Anthem Blue Cross last month, I knew how arrogant these people really are.  It never occurred to them that their timing was a little off.  That’s just dumb.  But President Obama, who is anything BUT dumb, saw the opportunity to make a point, in a big pro-healthcare speech.  He grabbed the news story, and ran with it.

What if, in my friend’s daughter’s case, the doctors would be willing to say “I like the way you do business,” to companies demonstrating even the tiniest bit of restraint?  What if, instead of partying at the most impressive  steak house in the city, the doctors enjoyed an excellent catered dinner in the company’s corporate dining room, or conference room, or whatever … And what if doctors were impressed by the corporation’s commitment to keep costs down, to do their small part to change the way healthcare costs keep rising beyond anything reasonable, even in the business world?  What if JUST ONE mega-company moved to change the culture of rewarding or honoring folks they want to impress by spending a lot of money on them, even before they they’ve earned the company a dime?  I’m a marketing-and-public relations consult, I see a ton of good press for a pretty unpopular target.

It seems to me that the only angry people we see and hear on the media are blowing in the wind, from ALL directions.  Nobody is offering any substantive solutions.  Nobody is willing to risk losing a few dollars by changing business-as-usual.  I’m solution-oriented by nature.  If the whole healthcare system is broke, let’s fix it.  Start by changing the culture of business.

I think a lot of angry people would have to applaud any company that broke ranks and at least tried.

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I’ll Never Be Lance Armstrong, but…

March 18th, 2010

I’ve known forever that exercise is an important component of staying healthy, including mentally, since it alleviates anxiety.  I know that because I always feel really good when I finish exercising – and not just because I’ve finished exercising.  I’m not speaking out of…y’know.  There are studies.

Some particularly intriguing studies suggest exercise keeps cancer from returning.  I also somehow got the message – in this case, it’s a mere rumor, since I can’t track the source – that EXTREME exercise is even better than just ordinary exercise.

Everybody has their own idea of “extreme”, but in my case, it means that at least 5 times a week (it would be every day, if I didn’t have other jobs that get in the way), I walk the mile down the mountain – a literal mountain, by the way – to Sunset Boulevard, load up with groceries at Trader Joe’s, and climb back up to my house.  Do I “break a sweat”, which is apparently an important component of  ”extreme” exercise?  O, yeah.

I’ll never have the dedication to exercise that a professional athlete has, but there’s an element of commitment to exercising to keep cancer away that allows me, for the first time in my life, to understand how the Lance Armstrongs of the world relate to their bodies — something that never really clicked when I exercised to get into a particular article of clothing.  Before cancer, my dedication to exercise never lasted more than a few weeks or months.  And then I inevitably returned to being the lazy sot I’ve always been, down deep.

Without planning to make a commitment, I apparently did.  It’s a commitment to exercise as extremely as I can stand, so I’ll stay healthy and live longer.  I think what makes it different this time is that the road to exercise was organic to my lifestyle. Without trying to construct it, I formed an exercise regimen.

If you hate exercise as much as I do, you might want to aim for something that fits easily into your life, a “plan” that just evolves.  I’m not deluding myself into thinking I’ll ever have the body of a 25-year-old again, but I really like the idea that I’m doing more to protect myself against the killer that lurks.

Here’s the most important thing I’ve discovered about exercise: I feel better than probably any time in my life.  I still eat enormous amounts of candy and sweets between dinnertime and the end of the day.  But the exercise has helped me lose an entire jean size, something I haven’t been able to do since high school.  Yeah, you can be old and vain, at the same time, and I’m still here to prove it.

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Statistics prove…exactly what?

March 15th, 2010

My second job out of college was in the sales promotion department of a local TV station.  There, I learned the skills necessary to twist numbers into combinations that encourage advertisers to buy time on the station.  I’m not great with numbers, but it wasn’t rocket science.  Nobody checked, anyway, as long as the station looked good.  And out of that grew my skepticism about statistics, in general.

If statistics are to be believed, I should be planning my funeral about now.  Five years is generally considered to be the outside statistical boundary of survival for anyone whose initial diagnosis is stage 4 breast cancer.  Well, guess what….I’m not only not dead, I’ve never felt better in my life.

Statistics have their purpose, but they don’t define our futures.  The sooner we figure that out, the faster we can concentrate on returning to the life we had before the disease, or implementing the new life we invent that’s fuller, richer … just plain better than the old one.

Here’s the quick-and-dirty about how statistics come to be.  A researcher gets an idea and funding for a project.  Numbers are gathered, some of them as long ago as 5 to 10 years before the study containing the statistics is finally published – first in academic journals, where it’s “vetted” by peers – before it finally reaches the general public.  All of this takes years.

In the meantime, hundreds of new drugs that have been developed and released to treat our conditions hit the marketplace, changing or challenging the outcomes of those statistics, even as early as while the numbers are being crunched.  Look around you.  With a few unhappy exceptions where research hasn’t caught up with need yet, like pancreatic cancer or the most aggressive form of multiple sclerosis, we’re living longer.

No, living longer isn’t “cured”.  If you think about it, we begin living a different life when we hear “You’ve got…”, whatever it is.  We can never go back to the life that preceded those words.  And to a great extent, how the rest of our lives play out have very little to do with statistics.  It’s how we chose to live, however long that is, that matters.

The reason I decided to post this now is because I was discussing statistics in general with a friend dealing with her cancer, when she told me a terrifying first-person story about her own oncologist, who was caught by the FDA and charged with manipulating statistics.  Dubbed “Dirty Harry” by his detractors, and even more frightening than her story, the charges against him were unaccountably dropped.

I’m not suggesting that statistical errors are most often produced by design, as in the case of my friend’s doctor.  The majority of numbers are just subject to manipulation, often to suit the premise of the hypothesis the researchers are pursuing.  And they’re almost universally out-of-date.

Here’s how we should view statistics: infrequently.  And with a healthy does of skepticism.  The odds of yours, or my particular case fitting neatly into any statistical pattern, is extremely small.  Probably statistically so.

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Diabetics on Xeloda

March 13th, 2010

Just a reminder, to anyone who is diabetic and taking the chemo drug Xeloda.  This drug often causes peripheral neuropathy, specifically “hand and foot syndrome”.  The symptoms include numbness in fingers and toes.  If the symptoms are extreme, the feet can become so painful that walking becomes difficult.

I lived with a diabetic until he died of that disease.  One of the symptoms of diabetes is peripheral neuropathy.  In layman’s terms, you don’t have feeling in your hands and feet.

That’s why if you are a diabetic and taking Xeloda, you should pay very careful attention to the condition of your feet.  You may not feel a sore that develops between your toes, or on the sole of a foot.  That sore could become infected and if neglected, it could turn gangrenous.

Gangrene is an extreme side effect of diabetes, but it isn’t all that rare.  So if you are diabetic and taking Xeloda, make sure you examine your feet very carefully, and very often.

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