A Patient's Thoughts on Research vs. Awareness

And yes, unfortunately, there is a versus.

I wrote an article for Healthline on this very important subject.

Please read it and let me know what you think.  And, if you agree, please hit the share button and let everybody know.   If I ever wanted anything to go viral, this is it.

Webby Awards

A couple years ago (wow, really?) a film crew contacted me.  They were looking for people with end-stage disease to film.  I was wary.  I had been contacted in the past by reality shows, and I didn't want my life and family on display.  But this was different - they wanted to do a documentary series on how people manage with a terminal diagnosis, and it was going to be uplifting.  So I said I would do it.

And, I did.  The series is called My Last Days, and my segment is called "Meet Ann."  One of the younger people they profiled was a songwriter, and right as he died, his song became a hit, which I'm sure was a comfort to his family.  This short is the one that they are using as an example and if you haven't seen it yet, you should.

The people who did the filming are the nicest people, and I'm still in touch with them.  Today, I got a notice that it is the last day for voting - they are up for a Webby Award, and against big film companies and media outlets.

So I am asking you to vote, to reward them for doing uplifting, life-affirming programming.  By doing that, you will be saying that what you want to watch is hopeful and true.

You have to sign up to vote but you can log in with facebook or twitter or create an account.

Vote for My Last Days here:

http://pv.webbyawards.com/2014/online-film-video/general-film-categories/documentary-series

And, if you haven't watched the series yet, please do.  Mine is in the upper right corner of this blog.  Many of the people have subsequently died but I am still chugging along!

This Star Won't Go Out - Book Review

Many of you have read John Green's "The Fault in Our Stars" and if you haven't, you should.  It is a remarkable book. Yes, the category is YA but don't let that dissuade you.  There is nothing childish about it. It is a gorgeous, insightful, true book.

The girl who inspired Green was a lovely girl named Esther Earl.  I know she was lovely because I was given her book for my birthday.  I couldn't put it down and finished it last night.

Her book is called, "This Star Won't Go Out."

Esther, nicknamed Star by her family, died of cancer when she was 16. She had lived with it for many years, always knowing the end.

It's a coming of age story, told in her own words,  about a girl with a terminal illness who knew she would never grow up.   Yet in reading the book, you knew who she was and who she would become.  She was a talented writer, artist, and most of all, human being with hopes and dreams.   Like all of us who know our life will be cut short, her dreams were not far into the future.  She didn't dream of marriage, weddings or children.  She focused on her day-to-day life and she didn't think farther than maybe a first kiss or the next convention.   The book consists of her blog posts, her letters to her family, her online posts (she, too, was active in social media - as many of us who don't feel well enough to socialize are.)  Her loving family gathered her writings and posts, put them together with their own thoughts and blog posts of that time, and made a compelling book.

The interesting thing was that I could relate to so much of it despite the 35 year age difference.  The dying experience is universally about accepting loss, but it doesn't really matter what you are going to lose.  It's the same feeling - the same idea of saying good-bye to your future and learning to live, love, and appreciate the moment while you have it.  Esther had never had a romantic relationship and I have almost raised my children, and yet there are so many things she said that I understood on a deep level - things that only a person in our situation can. Minor things, such as needing to sleep and rest all the time even though we seem healthy - which makes us feel lazy and can even irritate our families.  She discusses deeper things, such such as feeling guilty for what we put our families through.  She wonders how they'll do without her, yet somehow believing they'll be fine - not because she thinks they don't love her or she'll  be forgotten, but because she has faith in their resilience. She, like me, understands that life goes on without us and those who love us will continue on.   She's deeply religious, which I am not, yet it is a natural part of her life and makes sense for her and I understand her completely. In the end, we were more alike than different.

She missed so much that I had, boyfriends, marriage, children.  But even more than than what she missed -  she HAD so much.  She had a life well-lived - an excellent life, with people who truly, deeply loved her and whom she loved in return.  That says a lot.  There are many men and women my age or older who cannot say that.  More time would have given her more experiences, but ultimately would not have changed what she had or who she was.  She had done good in the world either way.

She also died well.  Which is more important than you think, and is something many of us hope for.  It is the last thing we can give our families.

Is it sad?  Absolutely.  Get the book and add some tissues.

Uplifting?  Amazingly so.  It defines what a life should be.  She was loving, accepting, giving and flat out remarkable. Not because she was dying but because she lived.  Just the letters she wrote to her family proved she was wise beyond her years - while still loving teenage things like making "smilies."  She made her mark on the world, despite her age.

Her book is not about death.   It is about enduring love.  This one girl made an impact on people and her legacy won't die until they do.  She'll be remembered all their lives.  Who knows, maybe her reach will extend beyond a generation or two. Maybe this book will be taught in a class one day.  Her personality came shining through her words, letters, and silly drawings. Her personality was how to love.

Because she was an online presence, people said similar things about her that they have said about me. We both found those things wonderful, but not necessarily on the mark. I think some of it comes from fear of death.  People believe they would not accept their fate the way we have learned to do,  and those who do know a secret.  I don't feel like an inspiration or anything but a person living through a sad thing.  The truth is, when given no choice you learn acceptance or you live miserably and fearfully.   Esther was handed lousy cards but played them the best she could, even at her tender age.  That is all anybody can do, and it is what most people find they can do.   Now her parents, in finding a way to accept her death and move on are doing the same.

She said it best, so I am just going to quote her from page 313, 20 days before she died and while she was waiting for scans (that turned out to be good - again, it shows how swiftly this disease turns):

"I feel happy that I'm still alive, but I feel kind of shamed that I'm not doing that much with my life.  I feel kind of like I'm fooling people, because you know, in my videos, and in what John Green and all those amazing people have said about me I feel like I am fooling you all, because I'm not always awesome, and I'm not always strong, and I'm not always brave, and you guys should know that, you know?  I mean, I'm not always this perfect person.  I get pissed.   I do stupid things.  I ...get angsty.  I cry.  I hate my cancer.  I judge people.  I yell at my parents.  I ... sometimes wish I'd never gone through this, and then I realize that if it happened it's who I am, and then I get all like "Oh that's just confusing."  But then I sometimes I wish it had never happened, the cancer thing."

Amen, girlfriend.

Her parents have started the Esther Grace Earl Foundation, which provides help for families whose children are diagnosed with cancer.  It is a charity I can't help but support.  When you are making your charitable donation for the year, please keep it in mind.  While I have been very vocal that research is most needed and "awareness" is completely unnecessary and anachronistic, I also believe patient/family support is vital.  Having been on the receiving end, it is an amazing help.  So please include this foundation on your list.

Esther Grace Earl

(Just an unnecessary disclaimer:  Nobody has contacted me from the family or publisher,  and the book was a gift from my (almost) daughter in law so this is a completely independent review.)

The Ultimate in Contradictions

So today is my birthday.

(Mmmmmm.....cartoon cake)

Thank you!

In case you were wondering, I turn 56.

(And I live in California)

Now, you might think that would make me happy. (Not the California part - the 56 part.)  And you are so right, it does. Often over the past few years, I didn't think I'd make it to this age.  I can't be more grateful I'm here.

Wisely, I've looked in the mirror, seen a sagging face and more wrinkles than in days past, yet I've just smiled and thought,  "Now that I know what it is to touch the edge of life, I don't care about aging."

(No real woman would do this because she'd have to clean the lipstick off the mirror)

True, I don't mind my age.

Also, a lie.

I'm super, super happy at being 56.   I'm also a tad distressed at being 56.

How complicated we human beings are!  How bewildering are our emotions!

(All in ten minutes!)

When I was bald, I couldn't wait for my hair to grow back.

When it grew back grey, I was less than excited.  But I had hair, that's what counts, right?

(At least it wasn't green)

Right.

Unfortunately, because I'm metastatic, I am not always healthy enough to upkeep with color, and by God, I am not going to die with roots.

(Why add more work for the funeral director?)

So grey it stays.

But grey hair makes me look.....56.  Washed out.  Old.  Sort of grandmother-ish.  I want color again.

But I won't.  I am a grandmother.

(Although not this one)

Also not always the most traditional one.

(Pick your reason)

My face.....I'd always thought I might do a little "touch-up" around this age.  (A full facelift costs $9,000, or at least it did five years ago when I'd asked.)  I don't want to look like Joan Rivers or Meg Ryan or any of those legions of sad Hollywood women trying to hold onto their youth forever.

(At this point she's just using superglue trying to hold onto her eyelids forever)

I was never beautiful so I don't have to hang on to lost beauty.

I just don't want to look mad, as I do these days even when I'm feeling perfectly serene.   People will look at me and say, "What's wrong?" when I was thinking about kittens and rainbows.

(Inside I'm smiling)

So, it was going to be one and done - just look refreshed, bring things up so I don't look sad, maybe add the chin that I'd been born without, and that was it. That was the plan.

But 3 years of Stage IV cancer has taught me that your face is not important, your life is.

Oddly,  unimportant or not,  I am still not thrilled at seeing my jowls drooping and the line between my eyebrows deepening.  That space under my eyebrows is hanging so low I can hardly open my eyes.  Why bother to put shadow on the lids since they can't be seen?

(She's pointing to a swollen eye that looks more open than mine naturally)

Truth:  I've been through too much.   I would never do another surgery and submit myself to those risks on purpose.

....Or, would I?

No, because there is a cost/benefit factor, even if the health factor played no role.  Is it worth it to get a facelift when your life expectancy could be as low as 6 months?

I guess not.  Even if I could hear, "Wow, you don't look a day over 40" one last time, or even, "You look so happy, did you see a rainbow or get a puppy?" the worth wouldn't be there.   But it would be nice to hear that one last time.

(Well, maybe not the puppy thing)

Of course, I have to also consider how often other people see me.  Which is almost never.  Even the UPS guy drops off packages and runs from my barking dogs, and although he knocks, he doesn't wait for me to open the door.  Which is a good thing as I'm usually in ratty pajamas being chased by dust bunnies.   Aside from the UPS guy and the folks at my cancer center, I don't really go many places so nobody sees my face to think I'm mad.

("I'll protect my mom from anybody seeing her in PJs! Just come here and let me lick you!")

As an aside, my 66 year old husband got carded when we went out to eat recently.  I know I said I don't go out and it's mostly true - we only ate out because we were visiting the grandbaby.  Since I don't drink I didn't have the opportunity to pretend somebody thought I was under 21. Next time, I'll order a beer, if only to prevent the gloating I dealt with for weeks days.  It might be worth the risk to my liver.

Actually, no it isn't.

Perhaps.....just a little botox?  That only lasts 3 months.  That might be worthwhile.  The line between my eyes will go away and instead of looking mad, I might just look slightly annoyed.

(Nancy Pelosi's botox has left her with a good mix of annoyed and surprised - as has her job.)

Injecting botulism toxin into your face when you don't have much of an immune system - good idea, ya think?

I've done botox before cancer because I have migraines. The migraines had mostly disappeared while sick, one of those wonderful blessings in disguise - because honest to goodness, the pain of a migraine is right up there with childbirth as well as the cancer pain I've had so far.  It would not be fair to have to deal with both at the same time.   But now that I'm in remission, the migraines are back, and my Imitrex use is back to weekly if not more.

Thank you life, for never letting me have any time without pain.  (Maybe I look mad for a real reason.....hmmmm....)

(Yeah, but look at all her glorious hair.)

So, botox ..... I could kill two birds with one stone, right?  Wrinkles and head pain?

Thing is.... I don't want to kill three birds.  Tweet tweet.

(Only pigs should die.  Maybe they are angry because they have cancer too?)

Whatevs. None of that helps the wrinkly neck thing.   Ick.  My cameras are now mounted on the ceiling in case I need to take a selphie.

I guess the point is that now that I'm not spending all my waking hours sleeping, feeling sick, or trying to survive, I am returning to normal.  Which is a beautiful thing.

Normal means planning beyond next week, thinking about the future - and not being thrilled about the side effects from aging.

(Fuck you aging.  Wait, no, that's not right...I love you, aging....I'm so confused!!!)

Truly,  all jokes aside, I'm thrilled about every extra minute I get, whether those minutes show on my skin or not.

Contradiction anyone?  I'll have two.

(Cosmos and Appletinis - as a former bartender we used to call them pussy drinks.... only they are mostly straight booze - another contradiction) 

I'm human. A glorious human with contradictions, weird emotions and not always perfect.

Happy Birthday to me.



At least I don't want a boob job.

(Nope, I'm not showing you boobs)