Tuesday, July 21, 2015

Cite Your Sources!

Does my title bring back horrible memories of high school, when the teacher wrote "cite your sources" in big red pen on your page?

Well, he or she was right.

I saw this graphic on my facebook timeline.  I sighed.

It's getting worse.


First of all, the commonly used (and incorrect) statistic is 30%.  As in, 30% of women with early stage cancer will eventually have a metastatic relapse.  Although I suck at math, I did produce a child who is majoring in math at Caltech, and I don't think 30% is the same as 1 in 3.  So this number is getting worse as time goes by.

This bugs me because I understand how these things happen - somebody makes a mistake and it makes the rounds online and once it does - it never goes away.  Ever.

I'm still getting the Neiman Marcus Cookie Recipe meme first seen in the 1990s.

So what's the mistake, you ask?  You've seen this number everywhere and believe it's true.   For a while, I believed it too, so I don't blame you.  But I decided to look a bit further, and after doing a lot of research and listening to people who are smarter than me, I've come to believe this 30% number is false.

If not false, at least there are no legitimate sources that back it up.

So where did it come from?

It comes from the MBC Network which a lot of us rely on to get our stats, and which is considered a legitimate source by publications across the globe.

The MBC network is honest and they cited a source for their statistic.   I'm sure they used it with good intentions, but it's wrong and has been (mis)used so often people now take it as gospel.

First, the citation is from a CME test written by a Dr. O’Shaughnessy in 2005.    For those of you who don't know what a CME test is - it stands for Continuing Medical Education.  Doctors must keep up to date with their field, and so they take these Continuing Medical Education tests for credits. (I take them for fun too, and I pass more than I fail, which tells you how easy they are.)  They read a paper, answer some questions and get a credit.

This oft-cited test had a throwaway line in it that said,

"Despite advances in the treatment of breast cancer, approximately 30% of women initially diagnosed with earlier stages of breast cancer eventually develop recurrent advanced or metastatic disease."

That line has no citation with it.  Nobody knows where it comes from or where she got that number. She could have totally made it up.   A friend of mine had written her to find out, with no response.    I have not been able to find anything that confirms it, and I have looked extensively.

But if you read it carefully, it doesn't even say that 30% of women will have a metastatic relapse.  It says approximately 30% will develop recurrent advanced or metastatic disease.

Where is the punctuation?  Should it read "recurrent, advanced, or metastatic disease?"  Breast cancer can recur without being metastatic - women can have another incidence of local breast cancer.  Or they can have a relapse of locally advanced cancer, which means in the lymph nodes, but not necessarily a metastatic relapse.  (Metastatic is the Stage 4, bones and organs lethal disease we all know and love.) So did she mean 30% of all early stage women will have some sort of brush with cancer again, including metastatic cancer?  Then what is the percentage who will have a 2nd cancer with no mets?  Looked at that way, that 30% number goes down for metsters.

Who knows what she meant?  It's a badly written sentence and more important, she didn't back that number up with any study or anything.  It was a leadup to make a point, and she never expected that to be quoted and cited and used everywhere. (I hope.)

Anyway, that sentence had nothing to do with the reason she wrote the test.  It wasn't important and shouldn't have been cited by the Metastatic Breast Cancer Network since it had no citation or study behind it. (I have asked them to take another look.)  Plus, it was written in 2005, and while I don't know the numbers, I think medications like Herceptin and Perjeta are going to prevent some relapses and change some numbers.  So if nothing else, it's a bit old.  Still, that 30% number is prevalent everywhere, and I have heard oncologists such as Eric Winer dispute and qualify that number.

So what is the real number?

That is THE question. And I don't think there is an answer for it because I don't think any agency tracks relapse rates purely in this manner.  I don't think there is a motive to track this and keep these numbers.

If you lump all breast cancer patients together - if you have a 70 year old woman with Stage 1a, ER+ cancer, and a woman with Stage 3c Triple Neg who is age 25, and a woman who is 65 with Stage 2 HER2+ cancer - if you put them all in a bag and shake it out, you can come up with some metastatic relapse percentage (not 1/3, I'm positive).   But in what time frame do they relapse? 3 years? 5 years? 20 years? How do you get data like this? Who is tracking this in this fashion?  

Nobody, to my knowledge.   Government agencies  know how many women are diagnosed with breast cancer each year, and they know how many die of metastatic breast cancer each year.  Drug companies and research institutions do tests on treatments and track that.  There are survival statistics by stage, by subtype, histology,  etc, based on research and studies.  But do they lump it all together to make a generalized percentage of all women with BC who relapse over the course of their lives?

If so, how?   What are the methods? Some women live 15 years, some 3. Some are survivors of 14 years who have a late metastatic relapse.  Some are like me and had a relapse within 2 years.  How would they factor into any tracking?   A woman diagnosed Stage 4 from the start is easy to track but what about those of us who started out early stage?  When I die, metastatic breast cancer will be put on my death certificate but until that day, I don't think anybody is interested in the fact that I relapsed.

Think about it - to get to that number, the government would have to take all the women diagnosed with breast cancer say, in 1990.  That would be your study population. Fast forward to 2015.  How many of those women relapsed?  How many died?  How long did they live? Then you could kind of extrapolate that out to get the yearly number.  But as far as I can tell, it's not done that way and of course, treatments have changed over the past decades.

I might be wrong and I would love it if somebody could give me an accurate picture of this and a couple of sources (that are cited).    But to my knowledge, this overall stat doesn't exist and that throwaway line in a test was a guess.

Another way to look at it:  if 250,000 women per year are diagnosed with early stage invasive breast cancer  (which isn't the case) and 40,000 women die of metastatic breast cancer every year (another fluctuating number) then you can say generally that maybe a little over a sixth of women will relapse.  (That is not 60% either!) But that's pretty flaky as some of those 40,000 were diagnosed Stage 4 from the start and there are a million variables that I haven't thought of because...?  You guessed it.  I suck at math.

The real truth?  None of this matters for an individual.  You will relapse or you won't.  And it's more likely if you have a later stage, a more dangerous histology, if you aren't a chemo responder, etc.  But it's not a certainty.  I have a friend with 3c breast cancer, diagnosed at 22.  She is healthy and cancer free today, at age 30.  Me, Stage 2a diagnosed at 51, I am the metster.  You just don't know.

As human beings, we want concrete answers. Those of us further along the line of metastatic cancer come to realize that stats are not important.  Sure, at first we try to squeeze ourselves into those boxes, as if they could foretell our future.  But we learn that they are for populations, not people. Stats say I should never have had a metastatic relapse.  Stats say that since I did, I should already be dead.  It is human nature to want to apply those numbers to us. That isn't the way it works though.

I don't think it helps our cause as advocates for women with metastatic cancer to repeat misinformation.  I also think that certain groups (K*ough*omen) deliberately misuse statistics for their own purposes, stats that were never meant to be used the way they are and which are now misunderstood by everybody.  To me, these groups look foolish.

Do we -  as metastatic advocates and patients - want to join them?

I don't.  I think it is powerful enough to say 40,000 women a year die of metastatic cancer, without having to pretend 1/3 of the women with early stage breast cancer will be one of them.

Most people have no understanding of statistical analysis and why it's done. So these kinds of misunderstandings happen, even to me as like I said - math is hard.  But I think it's harmful to misstate things, use scare tactics and otherwise try to make a bad thing worse.

Trust me, it's already bad enough.

Bottom line:  Don't believe everything you read online, even from me.  And don't forget - check your sources!

Saturday, July 11, 2015

Just little stuff because my brain won't function

I've been working on a post for about a month now.  I cannot for the life of me get what I want to say out of my head and through my fingers.  I don't think I can even blame that on chemo brain, as much as I'd like to.  Just sort of this blah, I can't write feeling.

So to let you know I'm still alive and kicking, I'll update you with some news:

1.  I have a book in the process of being published!  (And I don't have to write it!)

I know, I know.  I always said I wouldn't turn this blog into a book.  I wrote it as a blog and it was intended to stay a blog.  Plus everybody and their mother (and husband) who has breast cancer turns it into a book, and I figured I didn't need to add my voice to the noise.  But you people kept asking me to do it, and every once in a while I would say, "Hey, maybe they are right and I can turn this into a book" and I'd sit down and try... but just starting the story fresh.....I guess I didn't want to relive it.

Would you?

I can't even write a post these days much less change my whole life into a readable book.

But one day, a real live publisher came across this blog and made the offer. It seems that she will go through the entire blog, turn it into a viable book, get copy editors, illustrators for the cover and do everything. All I do is approve it at the end.

And then reap in the millions that every author gets, and live the swank life I always knew I should.

Okay, you know me, I'm nothing if not realistic.

My goal is to sell 5,000 copies.  It is a standard publishing contract, which maybe you don't know, means I get a measly 10% of the proceeds. So no trips to the Greek Islands for me.   Don't shake your finger at me, I know I'd have gotten a lot more in cash if I could have done it myself ... but I couldn't. Cash has never been the point anyway.  Plus, there is a certain cachet to having a book published by a real publisher.   And you never know, maybe I'll reach a new audience and help somebody understand that metastatic cancer doesn't mean swift death.

So look for Breast Cancer, But Doctor, I Hate Pink in your neighborhood bookstore about September 2016.

More news:

I am hosting a GoFundMe to help a friend of mine.  You may not know this, but when you are diagnosed with terminal cancer, many people start backing out of your life.  They don't know what to do or say, they want to protect themselves from pain.  My own brother has not spoken to me since my diagnosis.  We buried my parents two days ago and he didn't show up - to his own parents memorial service!   Other friends dropped away, but a few came closer.  Some started writing and keeping in touch when I'd been gone from their lives for years, which was heartwarming to see.  When people say that they learn who their friends are after a cancer diagnosis - they really mean it.

My son's science teacher and former coworker starting bringing over food, and checking in with me.  We'd chat, and eventually became real friends. (The secret to being friends with your child's teachers is an art - you can never bring school into it, and I didn't.  Just like he wouldn't tell  me how to parent, I wouldn't tell him how to teach.)

He has given a lot to me personally, and the community I live in.  If you read the GoFundME link (please do) you will see.   He's like my real brother.

Sadly, his dog has been diagnosed with cancer, and I want to help him pay for it.  He is wavering about it and I don't want money to be the deciding issue.  He loves dogs more than anybody I've ever seen and I want him to have this one worry taken off his hands.  And I want appreciation for a teacher who has been silently dedicated for students for years to be shown publicly.  So if you have $1.00, or $500 to spare, please pay it forward.   He represents all caring, dedicated teachers who want the best for their kids.  Let's surprise him.

Last piece of news:   because I'm in this weird half space where I'm healthy enough to do regular things but don't feel well enough to always enjoy it, I'm trying to come up with some sort of life and system. I am too healthy to sleep all day but too sick to go jogging.   I don't have physical energy or strength, even after the exercise class I took.  I was much improved and still am, my balance is back and some of my core strength -  but it still hurts to stand up too long and eating is still a big problem, I am finding quiet things to occupy my time.

Because, like with the GoFundMe above, I am big in giving back, I will send Cards on December 1st to any reader who wants one.  I am documenting the cards in the Card a Day Project.  I am not good at making cards (and worse and taking pictures of them) but you can see my improvement.  And in mid-November, I'll be taking names and addresses of everybody who wants a card from me, and you will get one.  It may not be beautiful, it may not be Christmas-themed, and it may not be art, but it will be made with love (and sticky fingers).

If you haven't, sign up for my newsletter,  I will update you first about the book.  Also, sign up and like my facebook page, where I post news that happen in the world of cancer, things I find funny, and updates on my life.  And, please don't forget to start your Amazon shopping from my page.  That affiliate money is the only money I make from my blog and it goes to buy the scrapbooking supplies I use in my cards.

Thursday, June 4, 2015

Full Circle, Squished Breasts

Unbelievably, at my last oncology appointment, my doctor ordered a mammogram - for me.   He said, "I think we've been neglecting your routine care."

Routine care?   Me and routine care?

Does not compute.

In 2009, when I was diagnosed, I only had my diseased breast removed, keeping my other one as a souvenir. With metastatic breast cancer and the constant PETs and CTs, not to mention the years of chemo, a mammogram has been unnecessary.  But as I get further into remission, I'm off real chemo and only on antibodies,  the tests are ratcheting down and the stuff that normal people have to do are ratcheting up.  

The mix of emotions I felt when he ordered that test were complex:  I was disbelieving, confused, nervous, astonished, fearful, sickened and upset, and those were just the tip of the iceberg.  For somebody who has had as much treatment as I have had, as many scans and tests and biopsies and surgeries and chemos, you'd think a simple mammogram would be nothing. Having a breast squished? Hell, I was stabbed in the liver while awake.


What's a mammogram?

I didn't want to do it.  At all.

Being me, when faced with numerous emotions, I always fall back on good old reliable anger.

"What do you mean I need a mammogram?" I demanded of my highly trained and skilled doctor.  "I thought all this treatment we have been doing for six years meant I could bypass it?"

I'm really thinking, "I'm way past these baby tests and now into the big girl tests.  I'm a grown-up cancer patient, not a child."

I almost stamped my foot.

He stated the obvious, "You are at risk for a new primary - you could have a new triple negative cancer, for example, that the treatment you are on wouldn't help."

I stuttered, I stammered.  My chemo brain stopped dead in its tracks.   "But.....but.....a few months ago I had a PET."

"PET isn't very accurate, especially when finding smaller tumors."

He wrote up the order for a digital mammogram and sent me back to the treatment room.  I think my doctor is amazing, and I do credit him for giving me these extra, unexpected years.  But I was pretty mad at that moment, and went back to finish my treatment with outrage in my voice as I asked the nurses, "Do you know what my doctor said I had to do?"  I was as upset as if he said I'd had to tattoo his name on my chest to get my next treatment.

When I calmed down and started thinking about it, I realized my anger was based in fear.  Not of the test, which is simple. It was fear of starting the process all over.  I realize how strange that must sound, coming from a person who has Stage IV cancer.  I mean, it can't get any worse diagnostically, right?  What's another new little cancer? Mentally, the idea of finding another cancer in my remaining breast, going through the diagnostic procedures and perhaps doing another mastectomy - it was too much to bear.  Emotionally, agreeing to this test felt like I'd be losing all the ground I'd gained.

I'd rather not, thank you very much.

I took the lab slip, and promptly filed it.  In the round bin, if you get my drift.    Unfortunately, they are efficient, and they called me.   Wearily, I scheduled the test.

This week, I was back in that old, familiar waiting room, TV blaring House Hunters.  This time, I was not waiting for a PET or an MRI, but a mammogram.  We know what happened last time I had a mammogram, 350,000 words ago.

I felt a sense of deja vu when called back.   I was given a gown, the locker key, and told to take everything off and lock everything up.  As an old hand at these tests, I knew to bring a sweater, so I put on the gown, my sweater, took my phone out of my purse and locked it up.  I sat playing with the phone until my name was called, at which time I'd slip it in my back pocket.

A 3D digital mammogram is no different than a regular old 2D one.  They still take your breast and like a ball of play dough, squish it into flat disk while taking a picture.  

This difference comes in when you have an implant, which I now have.  This brought a new and unpleasant surprise.  In medical speak they must do an "implant displacement technique."  What it means is the tech takes your breast, uses her icicle fingers and squishes around your skin until she feels the implant, then pushes it up as far against your chest wall as she can. At the same time, she grasps the remaining breast tissue and pulls it forward like stretched silly putty and smashes it against the ice cold glass plate.

Smile for the camera.

My one and only breast throbbed for days afterwards.  But having only one, the test was, at least, pretty short and in a few minutes I was paying my parking (only $1.00!)  and headed home.

Because of  the fact that I violently did not want this test, I also was not anxious to receive the results. It simply didn't matter to me.  If it came down to it, I would not do another mastectomy, period. This is not because of vanity, which as a one-breasted woman, would be ridiculous.  It's because of the years of pain, frozen shoulders, discomfort, loss of motion, phantom itching and other problems I have been suffering with since my mastectomy in 2009.  I have never fully healed.  I am grateful daily that I chose not to do a double mastectomy.  I already have metastatic breast cancer, and lines must be drawn about how I want to live out the rest of my days.  I draw the line at amputating another body part that I know will lead me to years of discomfort and is unlikely to prolong my life.

But I did the test.  Now, my insurance company is happy, which I suspect is the driving reason for being forced to have it in the first place.

I had my infusion appointment yesterday, and they did give me the mastectomy results.  Fortunately, I won't have to make a decision or call myself a liar because the test is clean.

But remember how the PET scan isn't a good test because it doesn't see small cancers?  Here is what my path report says: The breast tissue is heterogeneously dense, which could obscure detection of small masses.

See the problem there?  Well, a mammogram costs $7000.00 less than a PET to see nothing so I guess its worth it.  That, my friends, is why I rarely got mammograms in the first place - they couldn't see anything.

The report also says,  The right breast is surgically absent.  (Surgically absent as opposed to what, calling in sick?)

There are a few benign-appearing scattered calcifications.  Bi-rads 2

I'll take it.

They'd just better not ask me to do a colonoscopy.

Friday, May 15, 2015

Sole Story

I spent the past few years thinking I had one perk - I wasn't going to get old.  Of course, the life I've lived would be a horror to most people, but being a silver lining kinda gal, I started imagining all the things I would avoid by dying:

Falling and not being able to get up
My face melting into my neck
My earlobes dangling down to my shoulders
Having to google "attractive hairstyles for 75 year old."
Being called a "senior citizen" or worse, "old lady."
Having to wear orthopedic shoes
Needing false teeth.
A boy scout wanting to help me across the street.

Getting old sounds kind of scary and problematic.  But here I am, at the moment, NOT dying of cancer and now starting to face the problems of aging, as well as other things that crop up for normal people.  Sometimes, I don't even know what is regular old aging and what is the side-effects of treatment.  If my hair thins, is it because of treatment?  Is it damage from all the chemo?  Or is it just something that would have happened anyway, being post-menopausal?  (Plenty of women who never had cancer have thin hair).  Why is my finger joint bending a bit to the right?  Is that cancer? Treatment? Aging?

I (like every cancer patient) have a tendency to blame chemo and cancer for pretty much everything that happens to my physically.  It is the great dividing line of blame in my life.  Before cancer, I blamed general body foolishness.   Now - cancer.  Even if it might have happened anyway.

Some things, I can't blame on cancer.  But because of cancer,  I'm not sure how to deal with them. Take, for example, an ugly but common problem:  The bunion.

Bunion on the left, in case you can't tell.  

I have a bunion on my left foot, and have for years.  Before cancer.   I'm not even sure when I first noticed it, but it never hurt me, it didn't interfere with wearing any shoes, and it was generally one of those weird "things" that you ignore.

Fast forward six years, 7 chemos, four surgeries and some radiation later.   Now, of course, it hurts. Why it never hurt on days I wore five inch heels, I don't know, but now that  I have been barefoot for pretty much the past 6 years, it started getting worse.

It was probably the Gemzar, don't you think?

So it's ugly, yes.  But who cares, I'm alive.  When I started my exercise class, I realized that I was not walking properly due to that bunion.  I was putting my weight on the side of my foot and avoiding the big toe.  How long I'd been doing that, I don't know.  But I have had pain in my knee, hip and lower back, which I assumed was from chemo/treatment.  What if it wasn't?  What if it was from the bunion, and I'd been protecting it by my walk, causing pain?

So what do I do?  Of course,  I have no intention of doing a voluntary surgery, and bunion is voluntary.  After c-diff, I am not taking any antibiotics.  My white cell count seems to be permanently low, so I don't want to risk infection for a foot, especially since I can't do antibiotics.  I don't have the lifestyle where I'll be needing to put on a pair of Louboutins, so that's not an issue.

But I am worried about aging now, and maybe becoming a fall risk.  Walking on the sides of one foot is not safe when you are 80.  And while I've got a few decades before I get to that age, I now at least can consider that it might happen.

So I have decided to self-treat.  My goal is not to fix the appearance of the bunion, as I know that won't happen without surgery.  But I want to fix the way I walk and put pressure back where it belongs, and I want to see if I can stop some of the pain.

I searched Amazon and I found a "bunion splint."    I kept searching, and found one for $10.00.  It will stretch the ligaments of the toes and put the bad toe back in the proper position, at least while I'm wearing it, which I do at night.  Sold.

Kind of gives that RoboCop feel, yes?

I bought a toe separator, bunion protector.  You can wear this with shoes and it will protect the skin as well as stretch the ligaments of your toes.

It's more comfortable than it looks

I also bought a gel arch wrap, which somehow allows you to put pressure on the proper part of your foot.

And, I bought some Vionic Shoes

They adjust right across the bunion part for super comfort!

Yes, they are orthopedic shoes.  My friends all know I loved my pretty, pretty shoes, but those days are long gone.  Or so I thought.   For years, I've been wearing flats, Tom's specifically. Being short, I missed a heel.  When I saw these, they were very attractive to me, because they are adjustable across the instep, which means nothing pushes on my bunion and also because they are a wedge, which gives me height.  And, I can wear my toe thingy or my wrap with it - or not.  As I choose.  The shoe bed is comfortable and makes me walk the right way.

And, maybe I am aging and my tastes are changing, but I think these shoes are as cute as they are comfortable.

So my friends, I do not recommend that you treat yourself, if cancer rears its ugly head.  Get yourself to an oncologist, stat.  But if you have a bunion, you might want to try these methods and see if they help you.  I do feel like the pain in my knee has eased up.  I'll let you know how it goes down the line.  But I'm pretty happy with these methods and these shoes are amazing.  I'll probably get another pair, or two.

Maybe getting older isn't so bad after all...

These are called the Glenda Wedge Backstrap Sandal

Saturday, May 2, 2015

SXSW Part 2

One thing I wanted to do at SXSW was go to the Gaming Expo and visit Ryan Green, whose family was featured on one the Soul Pancake documentaries (as was I.)  Ryan is creating a video game based on his experiences with his toddler son, Joel, who tragically died of his cancer.  He had crowdfunded the game -That Dragon Cancer.  I financially supported him, as did many.  His game will be out this year.  More importantly I feel an emotional connection to him and his family.  I followed his posts avidly and felt I'd come to know this family as they dealt with this most terrible of tragedies.  I admired the way they are surviving and am awed at the grace of the human spirit.  They have included their son in the game: his laughter, his voice, and have recreated scenes they experienced with him.  It's quite beautiful.

When I heard Ryan was going to be at SXSW, seeing him became a priority.

SXSW Gaming Expo
I walked into the gaming expo, which instantly reminded me of my early casino days, working as the skinniest Keno runner in history.  Outside was a bright, sunny day, light breezes blowing, the Texas flag flying.  Step inside and you are in darkness, with glowing neon signs and the sounds of electrons talking to each other.  There were rows upon rows of games - many of them ones you (or your kids) know, and many new games you've never heard of.

I had no idea how I was going to find Ryan so I did it the old fashioned way: down one aisle, then up the next.

Did I mention that I was the oldest person at SXSW?  I think I did.

Eventually, there it was, That Dragon Cancer.  Ryan and another developer were talking to somebody else, but Ryan recognized his cyber stalker and said, "Hi Ann."  We chit chatted and he asked if I wanted to play his game.  Naturally, I wanted to see what he'd been working on in person, so despite my unfamiliarity with gaming I grabbed a controller and sat down.

As an aside - my kids, of course, grew up playing video games.  In a way, I did too - Pong came out when I was 16, and I spent many years in arcades and bars playing Galaga and Centipede, which I became quite good at, often seeing my initials, AMS, listed as a high score.  But the home systems passed me by - as a busy mother I didn't have time to sit down and play, although raising two boys, we did get many new systems, from Sega Genesis to the Nintendo Wii and everything in between.  There was one exception to my playing video games:  I did get into Animal Crossing for a while, and I had to learn the controller.   When my interest in that game waned, so did my memory of how to use it.

So when I saw down to play Ryan's game, I was apprehensive.  I couldn't remember what button to push and couldn't smoothly navigate the joystick and couldn't do those things in a crowd of people who were all there as experts.

Did I mention yet that I was the oldest in the room?

Still, with help from Ryan, I managed to get around.

Immersive was not the word for what I experienced.  As I began the game, the clanging noise, the lights, the crowds faded away and I was transported to a playground, where I played with Joel.  I fed ducks for him, manipulated playground equipment for him, listened to his laughter and looked around at the trees and scenery.  I ended up in a hospital where, by using a See and Say, I heard the bad news about Joel's prognosis from all angles - his parents, the doctors. They spoke in their own voices, making a poignant scene all too realistic.    The virtual room started raining soon, dreadfully,  filled with water, thunderclaps bringing on feelings of alarm.  The human voices faded out, the rain filled the screen, water rising, and I wanted nothing else but to be out of that room and away from the horror, feeling a visceral dread.  And, mercifully, that is where the demo ended.

I put down my headphones shaken, tears in my eyes.  I sat for a minute, trying to recover and process what I'd experienced, taking deep breaths.  I gathered myself, got up and just hugged Ryan.  There was really nothing to say.

He is winning awards for his game and I recommend you check it out and follow him on twitter and elsewhere. If you can donate to him, please do.   There isn't much else like it out there.  Not only is the game a touching and immersive experience, they are using this game to creatively honor their son's memory. The love and care in it shows.


Olivia M and Me.

I've been a  member of an online group of metastatic cancer patients for a few years.  These women all live in Austin and get together regularly to talk treatment and cancer stuff, as support groups do. They also have an online component.   The reason I joined another state's group is because I had a wonderful friend named Sandy Kugelman who was a member. Sandy was my cancer buddy, completely sympatico with me.  We laughed, we cried, we talked about the political and personal side of cancer.   We chatted nearly every day, sharing everything about our experiences. I still have many hundreds of messages from her.  She, also, had liver mets.  She, also had a son my age, and another older child.    She mentioned her group and suggested I join but as a Californian, I felt I didn't want to intrude. Two years ago, Sandy died.  I was as bereft as a person can be never having met the person in question.   So I joined the group.  If she liked them, why not?

And these ladies are wonderful.  They are everything you would want in a support group: educated, sharing, caring, intelligent and kind.   They are up on the latest in oncology: new therapies, clinical trials and treatments.  They understand their disease.  So when I went to Texas, I had hoped to meet some of them.

And I did.

 A meet and greet was arranged for me at a historical building, an amazing place filled with books and history.  I met women from the metastatic league and their supporters. I got the warmest welcome, full of food, laughter and conversation. There is nothing like this where I am, or at least that I know about.  The women all have mets, and they support each other, help each other and relate to everybody's experience in a non-judgmental way. Best of all, for me, they were all science-minded.

There were supporters too. Husbands and fiances, all of whom were there to encourage their partners.

We laughed, we shared our experiences, we discussed what's new in cancer treatment and the problems we experience in being metastatic.  It was truly an amazing experience.  I honestly felt like I wanted to move there after meeting this group.

Princess Reema

There were many speakers, from Jimmy Fallon to Malcolm Gladwell.  But the one I set time aside for to see was Princess Reema of Saudi Arabia, whose biography is here.  She splits her time between SA and LA, and is very interested in breast cancer awareness programs in her country.  Unlike the US, which I believe has no more need for awareness, in SA women are relatively disconnected from their bodies.  They must keep them covered, they are not educated about them and don't have the freedom we do to discuss this publicly.  A recent study I read stated that even the women who attend college there don't understand much about breast cancer.   So I am very supportive of her goal.

When I went to see her talk, I was very impressed.  There were several messages to take away from the things she said.  One, very important one, was not to compare. This was in relation to her living part time in a country that is repressive to women, and then part-time in Los Angeles.  She says if you can accept each place for what it is and has to offer and you don't compare, you can live a good life. And I feel like that is something we can all use in our lives.  We should not compare our current lives with our past, healthy lives.  We shouldn't compare our lives with the lives of others.  The message is to just live where you are and take (and give) what you can.

She is planning on having the biggest breast cancer awareness gathering in the world.  On October 25, over 10k people will gather in Riyadh, SA, to support the effort and hopefully get into the Guinness Book of World Records.  Please go to 10kSA.com to add your support.

I was fortunate enough to be able to talk to her privately, and she also came to my talk.  I was able to convey the position that many of us here take - that awareness has been achieved in the US, and that the effort has stagnated.  Awareness is the logical first step, but then there should be another step after that, which has been forgotten by the large charities in this country.  We must move on from awareness and into putting money towards something that will lead to a cure. (Do you hear me Komen Foundation?  No, I know you don't.)   Princess Reema is incorporating solutions within her awareness campaigns, for example, there are plans to do automatic testing of tumors as they are diagnosed for further research.  The potential to cure breast cancer starts in a lab, not a mammogram machine, and I believe she understood that point of view.

As I told her, a win for women in any country is a win for women in all countries, and I will look forward to see her success.  I don't believe she intends to repeat Komen's error and treat breast cancer as a marketing event and forget it is a disease.


And then, there was my talk.

Me and David Kopp

Making a point

I had been very nervous about it, mostly because it was a format I was unfamiliar with.  It was called a Core Conversation, which meant everybody in the room was supposed to participate. I'd searched online for weeks trying to see one but YouTube failed me.  My partner, David Kopp of Healthline, and I were to talk  about the problems inherent in curing breast cancer today, with him being the moderator and me being the "expert" and with everybody else in the audience supposed to dialog with us.

When the event started, I realized my purse had gotten tangled up with my necklace and badge, and as I stood in front of the audience, untangling it, removing jewelry and putting it back on and laughing, whatever fears I had melted away.  I felt very comfortable.  Heck, everybody had just watched me practically undress, how much worse could it be?

The room seated 125 and I believe it was about half full, surprisingly.  David and I had planned some questions and answers and discussion points, but we mostly felt that we would let the conversation flow where people in the audience wanted it to flow - our plans were just in case nobody said anything.  Fortunately, everybody was engaged.  People shared their insights and a wide variety of topics were explored.  We talked about how big data could help, how pharmaceutical companies could help, what had gone wrong and what could still go right.  People shared their own experiences and insight.  Everybody was enthusiastic, lively, had a unique point of view and we had a very good discussion.  We recorded it so hopefully it will be on video and I can share it with you at some point.

This was my first time speaking in public and I found it very easy, mainly because I was just talking and being myself, about a subject I feel passionate about.  If I'd had to memorize something with this chemo brain, I'm sure I'd still be on that stage, stuttering away.

If I ever do it again though, I will not be wearing those pants.

So a month later, there is my SXSW experience.  It was unforgettable, and I'm glad I went.  Although I didn't change the world, I had fun, shared my ideas and met some great people.

And, who can complain about that?  Not even me, the oldest person in attendance.

Thursday, April 9, 2015

SXSW, Part 1

On March 15, along with David Kopp of Healthline, I moderated a core conversation at SXSW. Being selected to do this was a great honor, and it wouldn't have happened without you, my regular readers.  So I obviously want to share some of my experiences with you.

What is SXSW?

South by Southwest, or "South by" as the natives call it, is a huge technology, gaming, music, interactive and film conference held each year in Austin.  It's hard to describe how much goes on. There were hundreds of talks by thought leaders in their respective fields, showings of new films and music by new bands as well as video game demos.  There were robot petting zoos, a maker zone, a job expo, a trade show, a comedy section, and so much more.   Keynote speakers range from Jimmy Kimmel to Malcolm Gladwell to Al Gore to Princess Reema of Saudi Arabia.

It is busy and crazy and full of passionate and interesting people sharing things they love and are knowledgeable about.  If you are old, like me, and are worried about the millennials, take heart.  They are smart, socially conscious and full of enthusiasm, even if they are glued to their phones.  Austin itself is a lovely city, growing rapidly, in part because of this conference  The energy sizzles. It's a wild west of ideas.  Natives though, stay away, as crowds and traffic overtake their city.

SXSW is full filmmakers, music producers, technology experts, all people full of enthusiasm who tend to the younger end of the spectrum.    Most of the people I saw were in their 20s, maybe a few 30s.  My grey head was the only one bobbing and darting (slowly) through the crowds of people, and I'm sure a few wondered why somebody had invited their grandma.  Standing in the line to get their badges, I couldn't help but notice that everybody around me could be my grandkid.

Although I'd heard about this festival, I had no clue what to expect.  I applied to speak on a lark, spurred on by Healthline. I only know I have a topic I feel strongly about, which as you all know is metastatic breast cancer, the end of "awareness"  and the need for more money to be directed towards research.  Over the course of the past year, I have learned that the search for a cure for breast cancer is insanely complicated and much more problematic than I had thought when I started this process, and in the future I'll focus my blog on some of what I've learned.

One thing has become crystal clear:  early detection is not the alter we can lay our hope to end breast cancer.  We tried awareness and early detection, and in 30 years, raw breast cancer deaths have actually gone up, by quite a bit.  We now know that no matter how early breast cancer is found, in some cases it still spreads.  What we don't know is why.  And in that "why" is the key to cure.  So that is what I was there to talk about.

I wrote an article on this topic - please share it.

In moderating a Core Conversation, I wasn't giving a speech - good thing because with chemo brain I can barely remember who I am much less keep an entire speech in mind. The goal was talking to others who had ideas, experiences and who were interested in the topic and getting them to open up.  David was the true moderator, directing the conversation and asking questions, and I was the "expert" having been in treatment, reading a lot about it and sharing a personal point of view.  I will share the success of the talk in another post, and there is video that has not been released yet but at some point, I can hopefully share with y'all, as the Texans say.  But a lot of other stuff happened during the five days, some exciting, some touching.  So here are my random thoughts.

Traveling with Cancer

I arrived midnight on the 12th, with our talk to be held on the 15th, which gave me a few days to adjust to the time change.  I'm in a weird place in my life - healthy enough to finally be able to travel and do things like this, but not healthy enough for it to be easy on me or even really enjoy it. Recovery, once home, literally took a week.

Most people think that when they are diagnosed with an incurable cancer, that they would travel and go on adventures.  The truth is, for me and many others, if you are in treatment, you are too sick to go anywhere.  Despite what you've heard, chemo is not a walk in the park and it makes travel nearly impossible.  When you do chemo after radiation after surgery- for years- the most traveling you do in one day is from bed to couch, and your dreams change from a Hawaiian beach to a hot bath.

Now, after being NED for a year, I am better. Not healthy by any means, but I can do it.  I'm not spending 3 days unconscious in bed, or staring out the window at my birds.  I can move.  I'm exercising.  I'm able to go shopping (although not without pain) and I can get up at the incredibly early hour of 10:00 a.m.   Yet, travel is physically demanding, and I don't look forward to it.  (Whine ahead!)  If I stand up for more than a few minutes, I have stabbing pains in my side.  There is no explanation for this, and so no solution.  My back hurts.  I get headaches easily.  My shoulder and right side is weak.  Carrying bags is hard, walking is hard, keeping odd hours....is hard.   I only have about 5 hours a day in me before I crash and burn (or take a ritalin to keep going) but, I must remember, that 5 hours I more than I've had in years.  Progress is incremental and because a cliche is in order:  it is not where you are now, it is how far you have come.

Eating is one of the most difficult things I face - I must get calories into my body but somewhere in treatment I left my appetite behind, and not only don't I feel hunger, it physically hurts to eat. I hover at 94 pounds and that is worrisome to my doctor.   Being off schedule makes it worse.  I think I only ate twice during my five days in Austin (not counting fruit for breakfast. (Those two times were pretty good though!)

We stayed at the Hyatt Place in Downtown Austin, central to all activities.  The Austin Convention Center was right across the street, the Marriott where my talk was held was two blocks away.  So I was situated perfectly.  The hotel staff was solicitous and kind, and the place was spotless and contemporary.  But there was a serious problem - the room only had a shower, no bathtub.  For a person whose bones ache terribly, and who walked 4,000 more steps per day than normal (which is 40)  a hot bath is a necessity.  I missed a bath every day that I was there.  Like the proverbial starving person talking about burgers and pizza and ice cream, I kept talking about baths and hot water.

So, here I was, at one of the most exciting and youthful events in the country, nervous about my upcoming talk and noticing my age and infirmity,  and longing desperately for a hot bath.

Would it be worth the pain?

Thursday, April 2, 2015

Semi Colon: Book Recommendations from the Bottom of my Pile

A sad fact about cancer is it took away one of my life's most pleasurable activities - reading.  I've been a reader since I was a little kid; some of my best days were spent outside, holding a book as big as me, sitting in the cool shade of a tree on a hot summer's day with a glass of ice water and a slice of white bread.  I became immersed in the lives of people far away and in different generations as grass tickled my legs and ladybugs buzzed about. I've been a hooked reader since Dick and Jane chased Spot, and I had thought I'd be a reader on my deathbed.

But something changed.  I assumed it was part of chemo-brain because I began having trouble concentrating on books.  I'd pick one up and put it down again, fretting at not being able to remember who was whom or what was happening.   I'd start chapters and pages over and over, even lowered my reading standard.  Eventually, I just give up. Reading was, for the first time, not fun.

This was my secret shame.  I told no one.  Losing my love for reading was worse than losing a breast, or a job.  It was like losing my soul.

But it has been about 18 months since my last hardcore chemo and I've been on only Perjeta/Herceptin and Zometa since then. People have been sending me books all along.  And I discovered that I finally have been able to sit down, read them and enjoy them again.  This is almost as much a miracle as my continued survival.   I don't know if chemo brain is wearing off - I do feel a bit more focused, at least as much as I can within my ADD capability.  Or perhaps something else is happening.   Whatever the reason, I don't question.  I just am happy.

But I still have a large stack to go through, so I will share some with you.

First up, we have Semi Colon,A Writer's Cheeky Journey Through Colorectal Cancer, by Neil Crone.

Neil Crone is a well-known Canadian comedian, having appeared on television in a variety of shows. He also is a columnist, and it is from his columns and email blasts this amusing and often heartwarming book was drawn.   Diagnosed with Stage III colon cancer, Neil's essays and thoughts during cancer treatment include everything from his enjoyment at being at home (even though his dog didn't treat him with special care), to relating a car ride while managing a "hair-trigger colon." And who knew...in Canada, you apparently get an actual cancer card!  There are, of course, the obligatory hiney jokes, and who am I to complain?  I've made plenty on the other end.

No matter what cancer you are diagnosed with, I think we can all relate to what Neil shared.  Humans are very much alike when it comes down to it, and when looking death in the eye, most of us end up feeling the same way - recognizing the importance of family and love, and the necessity of taking time to enjoy and experience a really good sandwich.  (Or, in my case, a hummingbird.)  Neil's book is hopeful, uplifting and funny.  Each chapter is interspersed with quotes that also provide inspiration. I do think that it is a must-read for anybody newly diagnosed with colon cancer or really, any kind of cancer at all. It's not so much about his treatment as it is what he learned by going through it.  Many cancer patients are looking for that light at the end of the tunnel, and Neil's book shows it is there.

Next, a book about managing breast cancer treatment, called Living Like A Lady When You Have Cancer by Donna A. Heckler.

So I confess, the title threw me off a bit.  "Living Like a Lady" made me think she'd want me to put white gloves on and pull the teacups out, and after C-diff, there is no hint of lady in me anymore, and all my gloves are medical-grade.

The idea that her writing would be prim and proper was quickly dispelled as I read the book. She talks about all the things you should know about managing cancer treatment that you might not be told by your doctor or nurse.  The tone is more like your best girlfriend is giving you realistic advice as you go through the mastectomy/radiation/chemo process than it is a manners lesson.  She gives quite fine advice too, not holding back, telling you what to expect at each step along the way.  In a conversational style, she tells you how your hair will fall out and not to be surprised about where it happens.  She gives advice on creams to use for radiation and chemo, how to handle hospital visits, what chemo complications might exist, how to manage support, etc.  And, like me, she urges you to drink your water!   There is so much more; I think she covered every topic a newbie to cancer would want to know.  It is a very comprehensive book, with pull-out boxes sharing what she wrote in her blog at the time it was happening to her. Because medical timelines are often different for different patients, this is not a book that has to be read in order.

She advises living life "radiantly."  Like Neil, that means appreciating each day for what it's worth. In writing about post-cancer life, she says she doesn't believe in finding a "new normal," that the old normal is possible after treatment.  Sure, she understands that that life after cancer will change, as it does for all of us, but says that maybe the changes are what should have been your previous normal, which is an original and refreshing viewpoint.

I really cannot recommend this book enough to the newly diagnosed breast cancer patient.  If you know somebody who has just been diagnosed, this will make a great gift, providing numerous tips for managing breast cancer treatment, and rest assured, she definitely discusses unladylike topics!

And last but definitely not least, The Smile Never Fades -- Compelling Essays by Breast Cancer Survivors by Bill Bastas.

I met Bill at SXSW and was instantly charmed by him.  He had sent me this book to review 6 weeks previous and I'd flipped through it,  but in preparations for the event that led me to him personally, I didn't have time to really go through it or blog about it.  I'm happy to make up for it now.  Bill's book is a series of photographs of women who had breast cancer, taken with their pets, along with essays they'd written about their experiences and how their pets had helped them.  It is a unique idea to put in a book but not one unknown to cancer patients.  We always mention our husbands, children, friends when we talk about the support we get in dealing with a dread disease, but our pets are a big part of comforting us too.  The years I was terribly sick and spent a lot of time in bed a cat was next to me 24/7. (She has since died - of cancer.)   My dogs have never cared if I'm sick or not,  making me get up to let them in or out for forcing me to walk whether I want to or not!  They lay a head on my lap or play, giving me a reason to smile.  Pets are part of our lives and acknowledging them this way is brilliant.

More than a unique book is what Bill is doing with the proceeds.  Bill has a personal experience with cancer, and has set up a charity in Texas called A Smile Never Fades.  He spends the money on what he calls a "Comfort Concierge" providing women with housekeeping services, transportation, food, or other needs that women with cancer face.

People have often asked me what charity to donate to.  Aside from the big one I support, StandUp2Cancer, I always suggest that people find these local charities - they are in every community and are usually run by incredibly smart and dedicated people with caring hearts.  They are not out for money or glory - they are trying to help people and give them exactly what they need. During my sickest, darkest days, a clean house was a gift beyond measure, and I cannot support Bill enough.

The book I linked to is not his only book - he has several others, including a cookbook.  So please search through them and buy one.  Not only will you see and read the stories of remarkable women, you will be helping out a wonderful cause, started by a remarkable man.

On another note,  I want to congratulate fellow blogger, Renee Sendelbach on her book Renee in Cancerland.  I haven't read it yet so I cannot give a review (I will in the future) but you can read her blog at Team S and get a feel for her writing style and story.  Or just go ahead and buy it without waiting for my opinion!  Renee is a metster blogger who was diagnosed at only 30 and is still with us 6 years later.    Her book is bound to provide comfort and insight for younger women facing this disease, and give hope for anybody diagnosed with metastatic breast cancer.