‘Tude

February 26, 2018 By

Not a cancer diagnosis goes by without someone saying, “Keep a positive attitude. That makes all the difference.”   Well… no.  Having health insurance, access to good doctors, a strong support system, the means for self-care, the ability to self-advocate, and getting a form of breast cancer that is treatable… THOSE make all the difference.

A woman who suffers debilitating side effects or dies, her attitude wasn’t positive enough?

I don’t really believe that most people mean to blame the victim. Yes, there are exploiters out to boost bank accounts and fragile egos, but for the most part, I think it’s a lack of clear thinking.  If we tell a woman to stay positive, where is she to go with her negative thoughts? I guarantee you they are there — dark and scary and ugly. It’s not the sum total of who she is, but the darkness is real and needs an outlet.

Also Read: Mother: A Poem, Self-limiting Beliefs

I’ve noticed a backlash just as silencing. If you don’t show appropriate levels of anger, you are a bubble-headed flake.

I deeply resent these culture wars and the way they distract us from the goal.  A discussion is good. Disparaging another, or even deciding what another person’s truth is, is not. Being human is alienating enough, let’s not add to it.  So in the interest of bridging, here are some of my most unpopular thoughts.

  • I had, and sometimes still have, bad days trying to cope with cancer and its fallout. But for the most part, my life is pretty flipping awesome.
  • Dealing with my cancer diagnosis forced me to strip my life down to the bones.  I like it better this way.  (please note: I get credit for that, not cancer.)
  • Post cancer, I live my life more deliberately and with more conscious appreciation.
  • I had a lot of pain during the last half of my radiation treatments. Other than that, my year of treatment carried very few side effects.
  • I lost some feeling under my right armpit from lymph node removal. Scar tissue can be painful, limiting my ability to do side planks in yoga. My pectoral muscle was compromised by mastectomy, so some arm exercises can be difficult.  Not impossible.  I have no other long-term physical side effects.
  • I don’t complain much about my diagnosis.  It’s no more and no less than a part of my reality.  I try to make an impact in the world and find excessive hand-wringing to be counter-productive.
  • I am an optimist, which means I believe in a universe that is predominately benevolent.  It doesn’t mean that I ignore the obvious downside of cancer, but it does keep me moving through life without falling off the cliff of despondency.
  • I don’t believe there is a “right” answer. The simple and complicated truth is that we need to be honest, we need to examine our own lives and make corrections as needed. As William Stafford says, “it is important that awake people be awake…the darkness around us is deep.”
Filed Under: Health, LIfe

Self-limiting Beliefs

February 26, 2018 By

Readers of a certain age will remember the last lines of The Breakfast Club…

Dear Mr. Vernon, we accept the fact that we had to sacrifice a whole Saturday in detention for whatever it was we did wrong, but we think you’re crazy to make us write an essay telling you who we think we are. You see us as you want to see us – in the simplest terms and the most convenient definitions. But what we found out is that each one of us is a brain and an athlete and a basket case; a princess and a criminal.

Every time I start to write a post like this, I imagine people rolling their eyes and laughing at me for sounding like this 80s Brat Pack movie.

But really: it’s kind of profound, don’t you think?

Whenever I tell people that I write a blog, magazine articles, or even attend writing classes, at least one person responds, “Oh, that’s great.  I am not a writer.”

Must Read: Tude, Mother: A Poem

Huh?  I think.  Everyone is a writer.  I’ve told people many times that knowing where to put a comma vs. a semi-colon isn’t the same as writing.  I try to stay away from my natural tendency to tell everyone how to live their lives, but if I could give everyone one piece of advice, it is to keep a daily journal.  Whatever that means.  For me, it means a notebook and a timer set for 15 minutes every morning.  And whatever is on my mind comes out.  Mostly simple and banal, mostly just a full bucket that needs some emptying.  This process clears out the murk and allows me to think more clearly and creatively.

A writer, I tell people, is just a person who writes.  It’s not necessarily Ernest Hemingway.

A few weeks ago, I decided to start a running program with an eye toward running a 5K in early May.  For some of you, that may sound like a lame goal, but it’s a big deal for me.  It means that I am learning to set realistic goals for myself.  That increases my chance of success, but also makes me more accountable, and therefore vulnerable to public scorn in the face of failure.  That’s a great attitude, huh?

As with any new project, I started this one by spending a lot of money.  I went to the local running store to get fitted for proper running shoes.  Do I pronate?  Superpronate?  I studied my shoes and had no idea, so I thought it best be answered by the experts.  During the conversation with the shoe fitting guru, he asked me what I’m working on.  I told him and found myself demeaning myself, or perhaps giving myself an out by saying, “I am so not a runner.”

He looked at me and said, “Anyone can be a runner.  A runner is just a person who runs.”

BUSTED.

Fear of failure?  Fear of success?   Excuses?

I don’t know.  But it’s got me actually catching myself before I tell people how I’m not an artist, or a musician, or a math wizard, or any number of things I say I’m not.

I am sure of one thing – Words Matter.   There is a difference between telling someone that I am not a runner and telling someone that I’ve never seriously tried running before.  One eliminates potential.  One puts the onus on me to try, or not to try.

Filed Under: LIfe

10 Things They Won’t Tell You

February 26, 2018 By

I get as tired as anyone of all those top 5 things to do to be happy or top 10 things to do to become a millionaire. Lists are usually too generic to be meaningful or generalize things that should remain specific. However, I heard this guy on Talk of the Nation today and though his list was phenomenal.

From WSJ, 10 Things Your Commencement Speaker Won’t Tell You by Charles Wheelan.  Do you have any to add or modify?

1. Your time in fraternity basements was well spent.

The same goes for the time you spent playing intramural sports, working on the school newspaper or just hanging with friends. Research tells us that one of the most important causal factors associated with happiness and well-being is your meaningful connections with other human beings. Look around today. Certainly, one benchmark of your postgraduation success should be how many of these people are still your close friends in 10 or 20 years.

Also Read: Flying Pig, Lamium

2. Some of your worst days lie ahead.

Graduation is a happy day. But my job is to tell you that if you are going to do anything worthwhile, you will face periods of grinding self-doubt and failure. Be prepared to work through them. I’ll spare you my personal details, other than to say that one year after college graduation I had no job, less than $500 in assets, and I was living with an elderly retired couple. The only difference between when I graduated and today is that now no one can afford to retire.

3. Don’t make the world worse.

I know that I’m supposed to tell you to aspire to great things. But I’m going to lower the bar here: Just don’t use your prodigious talents to mess things up. Too many smart people are doing that already. And if you really want to cause social mayhem, it helps to have an Ivy League degree. You are smart and motivated and creative. Everyone will tell you that you can change the world. They are right but remember that “changing the world” also can include things like skirting financial regulations and selling unhealthy foods to increasingly obese children. I am not asking you to cure cancer. I am just asking you not to spread it.

4. Marry someone smarter than you are.

 When I was getting a Ph.D., my wife Leah had a steady income. When she wanted to start a software company, I had a job with health benefits. (To clarify, having a “spouse with benefits” is different from having a “friend with benefits.”) You will do better in life if you have a second economic oar in the water. I also want to alert you to the fact that commencement is like shooting smart fish in a barrel. The Phi Beta Kappa members will have pink-and-blue ribbons on their gowns. The summa cum laude graduates have their names printed in the program. Seize the opportunity!

5. Help stop the Little League arms race.

Kids’ sports are becoming ridiculously structured and competitive. What happened to play baseball because it’s fun? We are systematically creating races out of things that ought to be a journey. We know that success isn’t about simply running faster than everyone else in some predetermined direction. Yet the message we are sending from birth is that if you don’t make the traveling soccer team or get into the “right” school, then you will somehow finish life with fewer points than everyone else. That’s not right. You’ll never read the following obituary: “Bob Smith died yesterday at the age of 74. He finished life in 186th place.”

6. Read obituaries

They are just like biographies, only shorter. They remind us that interesting, successful people rarely lead orderly, linear lives.

7. Your parents don’t want what is best for you.

They want what is good for you, which isn’t always the same thing. There is a natural instinct to protect our children from risk and discomfort, and therefore to urge safe choices. Theodore Roosevelt—soldier, explorer, president—once remarked, “It is hard to fail, but it is worse never to have tried to succeed.” Great quote, but I am willing to bet that Teddy’s mother wanted him to be a doctor or a lawyer.

8. Don’t model your life after a circus animal.

Performing animals do tricks because their trainers throw them peanuts or small fish for doing so. You should aspire to do better. You will be a friend, a parent, a coach, an employee—and so on. But only in your job will you be explicitly evaluated and rewarded for your performance. Don’t let your life decisions be distorted by the fact that your boss is the only one tossing you peanuts. If you leave a work task undone in order to meet a friend for dinner, then you are “shirking” your work. But it’s also true that if you cancel dinner to finish your work, then you are shirking your friendship. That’s just not how we usually think of it.

9. It’s all borrowed time.

You shouldn’t take anything for granted, not even tomorrow. I offer you the “hit by a bus” rule. Would I regret spending my life this way if I were to get hit by a bus next week or next year? And the important corollary: Does this path lead to a life I will be happy with and proud of in 10 or 20 years if I don’t get hit by a bus.

10. Don’t try to be great.

Being great involves luck and other circumstances beyond your control. The less you think about being great, the more likely it is to happen. And if it doesn’t, there is absolutely nothing wrong with being solid.

Good luck and congratulations.

Filed Under: LIfe

Your Silence Will Not Save You

February 26, 2018 By

That title is a paraphrase of a quote by Audre Lorde.

Late last week, we learned that Adam Yauch died at age 47.  A cultural icon for my generation, many knew him as MCA from the Beastie Boys.  In 2009, he was diagnosed with salivary gland cancer, a diagnosis only 2 in 100,000 American adults receive every year.

I didn’t know anything about Yauch, but read up about him over the weekend.  His story seems to be representative of my Generation X’s trajectory.  The Beastie Boys came across like screwed up New York punks, synthesizing the anger of hardcore and hip-hop; spitting out irreverence toward the status quo.  Less flamboyantly, he was a social activist, founding the Milrepa Foundation, active in the Free Tibet movement.  He was a Buddhist, even a personal acquaintance of the Dalai Lama.  He founded a film company, Oscilloscope Laboratories, which acquires, produces, and distributes independent films.  I think it’s our generation’s pattern — disillusioned by the weird 70s and Reagan 80s becomes angry then a spiritual seeker than a social entrepreneur writ large.

Now I hope he can continue to help us change the world.  When his death was announced on Friday, the headlines said that he died after a three year battle with cancer.

A hush falls over the room.  We suck the air in loudly and say “oooooh.”  We stop asking questions.

I have a few though, especially as related to this quote from his mother in the New York Times.

He had been admitted to the hospital on April 14 after a three-year battle with cancer of the salivary gland. He was conscious until the end.

“He was a very courageous person,” his mother, Frances Yauch, said. “He fought a long battle with cancer. He was hopeful to the very end.”

Mrs. Yauch said [he] had been undergoing chemotherapy this spring, but his health deteriorated rapidly over the last two weeks. “It all just seemed to happen overnight,” she said.

It’s a story I’ve heard before and absented any real details, I am left to wonder if cancer killed him or if he died of complications from treatment.  Chemotherapy is toxic by nature.  It’s how the cancer is killed, but it brings collateral damage.  White blood cells are knocked out too, leaving people susceptible to potentially deadly infections like pneumonia.

Also Read: 10 Things They Won’t Tell You, Lamium

You’ll not hear me say that we need to scrap chemotherapy.  But here comes the “you’re either with us or you’re against us” dichotomous thinking.  We get stuck in that old pattern of not being able to speak up about the downsides of a good thing, lest we are labeled ungrateful.  But how will we ever improve treatments if we can’t have a frank discussion about the limitations of what we currently have?

Maybe Yauch’s cancer was so rare that it’s never been researched.  Maybe they only had experimental drugs that carried severe side effects and maybe he knew that and took the risk.  Maybe he had metastases that destroyed his vital organs.

I do believe in his right to privacy, of course, and have nothing but the deepest sympathy for his wife and daughter.  I know that to them, and to everyone who loved him, these questions might not matter.

But they should matter to the rest of us.  How effective are our current treatments?  What is the risk?  How can we make it better?

To all you advocates, let’s not just drop this, ok?  Let’s not allow the headlines of “death” and “cancer” lead us to assume that we understand the inevitability, the connection between the two.

Don’t stop asking questions.

I’ll leave you with a confession, then, of course, a video.  I never liked the Beastie Boys.  My husband is a huge fan and when he told me Friday MCA died, I was all like, WHO?  That said, I like this one.

Filed Under: LIfe

Taking it all so personally…

February 26, 2018 By

Let me admit something upfront.  I am not invested in our culture of celebrity.  I don’t read People Magazine, frequent TMZ, or watch Entertainment Tonight.  I know plenty of people, many smarter than me, who use gossip celebrity stuff as a way to unwind.

I don’t get it, but I try not to judge it.

Michael Jackson “Mourners”

I can’t help but climb up on my soapbox, however, when I see people get all bent out of shape when celebrities die.  Last week, Donna Summer died and I happened to be online.  Immediately people started wailing and gnashing their teeth over how sad they were over her “tragic” death.  A friend of mine wisely commented, “How many times did people think about Donna Summer the day before she died?”

Also Read: More on lung cancer, Reliving History

I don’t understand why people take celebrity deaths so personally, but I bounce between various theories. Warning:  none of these are very kind.

1)  They want a distraction from the mundanity of their own lives.
2)  It reminds them of their own mortality.
3)  They want to avoid their own problems.
4)  They want an excuse to feel something.
5)  It reminds them of their long-dead youth.
6)  They are looking for someone to feel sorry for them.
7)  They like being miserable.
8)  They have a serious mental illness.

I don’t mean to be flippant about a death.  I am sure there were lots of people who really did have a personal relationship with Ms. Summer and are no doubt overwhelmed with grief.  To them, I offer my deep and sincere sympathy.

But much like my post about MCA, I find the story behind the story most interesting.  The family has been public about pointing out that Summer’s lung cancer was not caused by smoking.  I have read that Summer believed that she got lung cancer from 9/11 debris, so that may be the motivation behind this statement, but I think there’s something more to it.To people weeping when they hear “Last Dance”  on the oldies station tonight?  You get a different type of sympathy from me.  Just because you had your first kiss while roller skating to “Last Dance” in 1979, it doesn’t mean she was your friend.

I think that lung cancer is the most self-recriminatory version of this complex cancer disease.  People always ask, or assume, that a person with lung cancer was a smoker.  Because if s/he was a smoker, then somehow s/he deserved it.  It is undeniable that smoking causes lung cancer, but two other things are also true.  First of all, not all lung cancer is caused by smoking.  In fact, if everyone were to quit smoking today, lung cancer would NOT disappear.  Second, and often forgotten, not everyone who smokes gets lung cancer.

Another plea for you — stop accepting lung cancer as simply a risk, or a consequence, of smoking.  There’s a lot more to the story than that.  It’s a deadly set of diseases with very low survival rates.  As they say, the lungs you save might be your own.

And while we’re at it, let’s please keep our perspective on celebrity news, ok?

Filed Under: LIfe

Product recommendation

February 26, 2018 By

I start off by saying that I was not asked to do this, not paid to do this, nor offered any freebies.  I found this all on my lonesome, just like a big girl.

^^not me^^

I’m on the eternal quest to find the right home for my prostheses for when I want to wear them.  For anyone who doesn’t know, I had a double mastectomy without reconstruction in 2009.

The medical equipment place gave me some mastectomy bras when I was originally fitted, but they are that rayon/shiny/yucky kind of bra that you might find in the 1940s, or maybe on your great-grandma.

Before the big casino entered my life, I was a sports bra kind of gal.  I’ve tried to slip my prostheses into sports bras, but they always seem to slip out.  That makes for a bad day.  And the mastectomy bras make my underarm sore.  I don’t have lymphedema, but I do have some scar tissue on the right side where they removed some axillary lymph nodes in 2008, and the band of those bras just seems to hit that tissue directly.  I can usually feel the soreness the next day.

In my online research, I read about the Genie Bras, which are not made for mastectomies but have a removable pad for the typical breasted women to wear if they so choose.  The cool part is that the opening for the padding is big enough to put the prostheses inside.

Try these articles: Pink Implosion, Sometimes awareness is a good thing

At Target this weekend, they had them so I picked up four.  They came in boxes of two, at $19.99 per box.  As anyone who has priced specialty mastectomy clothes knows, that’s pretty affordable.  I am happy to report that they are as good as I’d hoped they’d be.  The material is indeed very soft and stretchy.  They feel a lot like sports bras.  I wore two different styles over the weekend and my scar tissue is behaving itself.

The only complaint would be that I was hot in it, and sweated underneath the bra on my chest.  I think that was more a function of the weather than anything as it is hot as Hades in the Midwest.  Thumbs up from Uneasy Pink!

Filed Under: LIfe, Science