Wednesday, September 30, 2015

Breast Cancer Deaths by Year. Simple Raw Numbers.

Here is a chart to start Pinktober:

 Overall Breast Cancer Mortality by Year - USA*
Year Source No. of Deaths
2015** 40,730
2013-2014 39,620
201l-2012 39,520
2009-2010 40,170
2007-2008 40,460
2005-2006 40,410
2003-2004 39,800
2001 Wiley Online Library 40,600
2000 (ACS) 41,200
1999 Cancer Journal for Clinicians 43,700
1998 Cancer Journal for Clinicians 43,500
1997 SEER 44,190
1994 Wiley Online Library 46,000
1992 CDC 43,063
1991 CDC 43,582
1988 New York Times Article
(indicates that the average in the mid-80s was 40,000)
1970 Wiley Online Library 30,100


What is this chart, you ask?

For years, patients, advocates and activists in the metastatic breast cancer community have shared this fact: 40,000 women per year die of breast cancer, a number which hasn't changed much over the years.  Each one of those 40,000 represents a beautiful life, somebody loved, and we all feel sadness that number is static.

We all say it, but is it true?  I decided to find proof.  Like with the 30% of early stage progress to mets number I recently questioned, I got curious.

I was surprised to find there was nothing in existence that outlined this, so I dug around and created a chart myself.

Apparently, these raw death numbers don't mean much to epidemiologists, who are mostly trying to tease out underserved populations.  Like the other number I questioned,  it just doesn't seem to be important to anybody but those of us living with the disease.  We will likely never know the number who relapse after an early-stage diagnosis.

It's always been my feeling that as laymen we shouldn't rely on statistics and numbers too heavily. The old phrase "There are lies, damn lies, and statistics" is true.  They rarely mean what we think they do (as in the famous 1-8 statistic).  The same numbers can be used to "prove" different things,  and are probably best left to mathematicians. However, in this case, I know something else - that too many women are still dying of breast cancer.  These 40,000 are people, and I have known a few of them.

As for the chart - it's hard to go further back than I have, and sources get pretty shaky beyond 2003. The US does not have a national cancer registry.

What's the point of knowing this?  Elementary school kids wear breast cancer bracelets, and college girls do manual breast exams, women get their mammograms. If a lump shows up, their first thought is breast cancer - in fact, in the course of keeping this blog I've been contacted by numerous 13 year old girls terrified they had cancer. Awareness, I contend,  has been achieved.  It was once an important concept, back when breasts were hidden and disease was shameful, but times have changed.  The intense focus on "awareness" has not.  It's like the temperance movement, an anachronistic idea in today's times.

I'm not saying one should not be screened.  Of course finding breast cancer early may give you a better shot at survival - but it also may not save you.   Studies are showing that the idea of early detection leading to a cure is not as hopeful as once believed.  A scalpel to cancer at the perfect moment should stop it in its tracks, but we've learned the biology is too complicated. Like we once believed you had to remove the breast, the pectoral muscles and all the lymph nodes in a disfiguring surgery called a Halsted mastectomy, we now know that removing only the cancerous lump may be enough. Halsted mastectomies are not done anymore, and we know that even a small cancer can metastasize, sometimes years after original diagnosis and treatment.  

Times change.

But one thing hasn't changed.  40,000 wives, mothers, sisters, loved ones and friends die of breast cancer - each and every year.  Far too many.


I wondered how to deal with Pink October this year.  Years past, I highlighted the insensitive advertising, boob focus, and misleading marketing, giving many what they wanted - attention.  I was sarcastic and angry - I fired off too many angry emails that effected nothing.  This year, I am going to be positive.  I'll be giving people my truth, things to think about, and ways to effectively approach this month.  I'm changing my focus too - anger is useless.  The likelihood is in our lifetime Pinktober won't stopped.  Rather than fight each company who wants to capitalize on our disease, we must instead try to get them to give where it is needed, and have our friends and neighbors understand a different point of view and what is needed to solve the problem of breast cancer. And, we need ammunition, although perhaps not pink bullets.  Wouldn't it be amazing if people realized awareness has been achieved, and it's time to move to Phase 2 - a cure? What if Komen decided to give their multi-millions to research instead of creating more awareness pamphlets? Truth is, they aren't going anywhere, but maybe we can convince them to spend their money in a wiser way.

*My disclaimer is that I am a writer and a creative type.  Numbers, as Barbie says, are hard.  My son, who is majoring in math at Caltech, might disagree with that, but he is not here to proofread this for me..   If you see that I've transposed something, let me know.  But for those of you who like to to use that 40,000 number (and I know who you are!) here is something link to. Please use it responsibly and remember to keep it in perspective and understand it is not a definitive answer of anything - other than we are still dying.

Monday, September 28, 2015

Pity Party and a Breast Cancer Lesson

Six years ago, when first diagnosed with cancer, I did what many do, including you, dear reader, who is maybe finding my blog for the first time.   I searched online for breast cancer stories, to find other women like me.  The one burning question I had, that you have too, is "What is going to happen to me?  Am I going to die of cancer?"

We all think that at the beginning.  Every single one of us.

The computer savvy among us go online. We research statistics, even though we don't truly understand what they mean. We read studies without knowing medical terminology.  Most importantly,  we find stories.  We find people with our stage, our age, our type of breast cancer and scan their histories for clues to our future.   We look for similarities in others thinking that in them, we can find ourselves.  We join forums and inspect signatures, looking for smoke signals that say we'll be okay.  "She has HER2+ Stage 2 cancer and has been alive for years" we think.  "Maybe it's not so bad." Our minds are programmed to make sense out of randomness and we refuse to accept that life is unknowable.

Early on, I was as voracious in my studies as any first year medical student.  I spent many bleary-eyed nights reading.  I read blogs, I read statistics, books about statistics (learning that I couldn't rely on statistics).  I read science textbooks, as well as  CaringBridge diaries.   But mostly, I read forums.  I joined the forums and Her2 forums, among others, where I found practical, interactive value.   Not only did I read, I could talk, and ask questions, and share my treatment and find out what others thought.  I discovered what therapies other women were getting, what should happen when, what to expect with surgeries, even where to go for help or hats.  I learned that coping mechanisms are varied: many women are terrified, but not all.  Many woman turn to religion and there are atheists in foxholes.  Many are hopeful and the same number feel profound sadness.  I learned that neither sarcasm nor earnestness always go over well in written form, and that cancer doesn't always make people kind.

Not even me.

As I progressed with my disease, forums and the give and take had less value, and eventually became a negative for me. I knew too many woman like me, who I'd talked to, been friends with, who had progressed and then died.  It seemed wrong, to me,  to read about the death of a friend, post about how much you cared in her thread and extend sympathies to her family, and then not five minutes later, move on to the next thread to discuss your hot flashes. It seemed disrespectful, discordant with reality.  Yes, we tell ourselves, life goes on.  But felt dirty.   So I stopped and stuck to facebook.   But for a while, it was a lifeline.

During that time when the fear was fresh, I met some wonderful women, a few of whom I'd kept in touch with and some who I had not but who followed me on this blog and voted for me in the contests, etc.  One particular woman has been a faithful friend, always sending me cards and trinkets, never caring whether I was healthy or sick, able to respond or not; she was just always in my online life.   She told me that a group of women who all had reconstruction at the same time I did have been meeting in Vegas annually, which I vaguely remember from my time on the forums, and this year my friend, who was an early member of this group, invited me to go as her guest.

Normally, I would say no.   Travel is hard and my health is unpredictable. It seems unfair to spend money on a trip that my husband doesn't go on; we've gone so few places together the past decade. In truth, I realize most of the traveling I like to do is between the pages of a book, safe in my bed.  Plus, I thought,  I'm not a "Vegas Person."  I don't drink (anymore), gamble, and these days - eat.  There are a million reasons not to go, and I thought of all of them.

Southwest had a sale and I booked it anyway.

I can still surprise myself.

This was back in June, when I was feeling pretty good for living in CancerLand.  The pain that I had back then was the same pain I have had for years, manageable with medication, fine if I rest.   It's a sad fact that I can no longer live without pain meds but a happy fact that it is controlled well enough.  My inability to eat means I am weak and have no stamina, and my anemia means I sleep a lot, but for the most part, I felt I could enjoy a trip and maybe participate and there was no reason to think I couldn't even improve between June and September.

What is that saying?  Life is what happens while you are busy making other plans?  Intense pain started up in my left side, the same place I've always had pain.  It's like a knife that had been there for years suddenly was heated up and twisted.  The intensity came and went, starting as a burning coal in my left side, spreading through my flank and throbbing into my back, making sleep difficult.  I had an attack two weeks before my trip that had me retching on the floor over a red plastic bowl kept under my bed for past attacks of nausea and nearly forgotten about.  The pain is so strong I felt I should go to the ER.  (I'm stubborn, I *hate* the ER; I did not go.)  Next day, I made an emergency appointment with my oncologist.  In an illustration of how close the cloud of cancer is, his smile turned to knitted brows in a nanosecond - I had a CT the next morning and my doctor had the results before I even got home.

No new cancer.

The pain had already eased, at least back to slightly above normal knife levels.  Then it heated up again, and again, I was a rolling ball of drug-slamming hurt.  Because life loves to screw with you, the pain began on a Friday night.  Again I waffled about the ER but again didn't go. We now know it's not cancer, I'm not dying, all systems are functioning - so it can wait.  I'll call on Monday if it's still there.  And naturally, Monday rolled around, with my trip two days away, and the pain, again, had waned.  I was left feeling bruised, like a cruel boyfriend had kicked me in the side; but battered women get up every day, and so did I.  I packed.   People started suggesting it was kidney stones, and that made sense.  I drank a lot of water.

I sent vibes to the universe that the pain stay at the lowest level for the next week, packed my pain meds and a few extra, and got on the plane.

Vegas was beautiful, and one doesn't have to be a "vegas person" to be impressed.  My friend was everything I expected and more - a solid supporter and a person who took care of me - she even had a limo waiting for me at the airport, making me feel like a celebrity.

I've been so independent all my life that I'm slightly startled that somebody helping me is what I need now, but it is the truth.

My room (at the Arias, quite lovely) was an adjoining room with my friend next door.  She was sharing with other friends to keep costs down; I need my privacy more than money.  We kept the doors between the rooms ajar so we could chat.  While we were all getting ready to go to a reception, the pain started up in my side again.  Frustrated, I took some meds and rested on the bed, my favorite humor radio show playing on the phone to calm me down.  Next door, I could hear the women chattering eagerly and excitedly.  The music played, the wine flowed,  and they began singing.   As the meds took effect, I peeked in and they were doing that beautiful girl thing  - getting dressed together, blowdrying hair, all sharing a bathroom and singing and dancing with towels wrapped around them.  These women were mothers, grandmothers even, but still young and sexy, from all parts of the country - and sharing joy.  They had formed this friendship long ago and were uninhibitedly loving each other.

Like sisters.  There in front of me were the mythical breast cancer sisters we have heard so much about.  Like unicorns, so strong and solid and rare.

Aching with admiration and pain, I took video for them. Generously, they wanted to include me but knowing the pain was etched on my face, I insisted on staying behind the camera and participating that way.

On the way to the reception, walking with these unicorn women, men were falling over themselves to talk to them. These girls just strode through the Vegas strip, glowing, owning their space.  Heads turned. They had their power back and it showed.

And that's when I lost mine.

It's not my nature to feel sorry for myself but nature lost its way.  A tear slipped past my eyelash extensions as it hit me - we'd all been diagnosed with cancer at the same time, and for them it was over; in the past.   They felt good, they looked beautiful, they had their lives back. They weren't living in pain, taking medication with the spectre of death hovering near.  They could eat, enjoy their lives, and even drink and dance the night away as I would have done just a few years ago. They had developed these friendships and grown their lives while I'd been sick, doing chemo after chemo, and sleeping.  They got to be the mythical survivors, and I didn't.  They were done, and I wasn't.  They were healthy and I was still sick, in treatment every three weeks, year after year, turning into a weakly skeleton.    It felt so unfair.

I gave myself a pity party.

I know.  Not my finest moment.

As a tear fell, I quickly brought the ever-present Perjeta/Herceptin drip Kleenex to my eye.  I hoped no one would notice my moment of despair,  but one of these girls, observant, asked "What's wrong, are you okay?"    And I briefly shared my thoughts, simply saying "You all look so healthy and for me it's not over"  and was rewarded with a gift of a simple kiss on the cheek and the comment, "You know what?  That really sucks."

Validated.  No false claims of "you'll get there too" or "you are doing so well" or "you don't look sick"   or whatever it is that people say that I no longer listen to.  Just the truth.

Yes, it sucks.

We soon saw a Vegas bride, standing in her wedding dress near a slot machine, her proud and slightly tipsy parents handing out flowers, her shell-shocked husband handing her a water bottle. She bragged that she'd found her beaded and tulled gown just the day before, and I realized this was all spur of the moment, a true Vegas wedding.   We congratulated her, and as I took a flower,  I transferred my sympathy to her as I imagined how her life, like all of ours, will not go as she planned this night.  She'll have too many babies or none at all, she'll get divorced or stay married but either way, there will be rough times. He'll cheat or she will, dogs will crap in the house and cats will scratch the furniture and they'll blame each other.  She will have love and sadness, grace and pain. She may even get cancer, or he will. That's how it goes, I thought, as we walked on, sniffing our posies.

At the reception, I met many women, some who knew me from this blog, some who didn't.  I was struck by the disparate group, seemingly having nothing in common yet sharing complete togetherness.  There seemed to be every difference you could imagine - ethnic, socioeconomic, age, nationality,  yet none of it mattered. They were  all coming together in what appeared to be true, loving friendship and sisterhood started by a common experience.  Real sisterhood, the kind that consists of unconditional support.

It just worked.  There was not a  moment of cattiness.  I dare you to find a group of 40 women who lift each other up like that.  There was love in that room, palpable as our lumps were so many years ago.  My eyes prickled again, this time in appreciation. They took an ugly, terrible, life-changing experience and turned it into a thing of beauty and are flashing life for the world to see.

I realized how trivial and self-centered my pity party had been. Deep-down, cancer is not over for any of them, which is one reason they meet 7 years later. They have fears of relapse. They have hot flashes and bone aches and tales of tamoxifen and arimidex and nerve damage leftover from chemo, they have anxiety about their next mammogram or oncology appointment, and they have friends, who like me, are metastatic and who they worry about. Yes, maybe my life is more difficult and will be shorter, or maybe it only seemed that way in that selfish moment.  I am here now, and now is all that counts.

Every year, these girls walk towards each other under the starburst lights of Vegas.  Some drive, some fly, some save pennies for this moment of rare sisterhood.  If you really are searching for the answer, here is the truth:  yes, you will die.  If not of cancer, then of old age.  The mystery of your future is really no mystery at all.  At the very end,  we all end up in the same place, with emerald grass waving over our heads inside an eternity of blue silence.  The lesson of cancer, of life,  is to find your family, wherever they may be and love them while you can.  Some get married by slot machines in Vegas and some find each other on stormy seas of disease.  It is who we cling to for comfort and friendship while on our walk through life that makes our journey sublime.

Tuesday, September 8, 2015

The Brobe - and a contest!

"It's my baby, just like your blog is to you," said Allison, as she wrote to me about her cancer-inspired bathrobe.

Her words caught my attention.  I have put a lot of time, energy and thought into writing this blog.  I am as protective of it as a 1950s teenager would be of the diary in which she wrote "Mrs. John Smith" over and over. Not that every word is perfection, of course; most are not.  I don't even agree with a few of the things I wrote early on.  But I won't change them or remove them, as they are a sign of my evolution. My heart and soul is here, and if you read it all, and are a discerning person, you will know me a little.

Can a bathrobe be that revealing, I wondered?  And, should it be?  Like a baby you nurture and help grow, she obviously had to adjust as new new ideas inspired, and had to have an end result for the market - unlike a blog which can keep going and going.....  (I shudder to think about my end result.)  She has hopes and dreams, of it helping people, filling a need, and making some money.

I agreed to review one - to babysit her baby.

Based on the Brobe, will I get to know Allison a little?

It's like one of those facebook games, "What does your design say about you?"

Here is the answer:

"Allison is a very clever person, organized and thoughtful.  She likes luxury and comfort, and is a problem solver. She has the ability to notice the tiniest nuances and details. She believes everything has a place and likes creative elegance."

The Brobe may initially have been designed for cancer patients, but it's useful for all women (and men, I daresay.)  The thoughtful design elements, missing from so many robes, are certainly useful for the breast cancer market, but would be wonderful for the Mommy market, the Grandma market, the Teenage market  - pretty much the Bathrobe market.

So what does it have?  All the things that women need in cancer treatment are there.

The fabric is very soft.  Cancer patients, post-surgery, during radiation, and because of chemo, tend to have very sensitive skin.   I am six years into cancer treatment and I rarely get dressed for this very reason.  Most clothing is not soft enough for my skin.  I'm like a toddler feeling every tag, and screaming "Mommy, cut it off!"  Only it's everything.  This is not a joke:  Before cancer, I used to come home and immediately kick off my shoes.  Now, AC, I come home and immediately kick  off my pants.

The Brobe comes with a post-surgical bra that's useful beyond post-surgery.  It's comfortable and yet supportive.  Plus it matches the Brobe, which helps with any gaps.  The bra opens down the front and closes with velcro.  Why velcro?  Because it's much easier to manage after surgery.    Many front close bras have hooks and eyes or zippers, something difficult to manage, especially if you end up having shoulder problems, as I did.  The bra comes with pockets, which can be used for ice packets or a prosthesis.  (She has one specifically for nursing mothers too, which allows a mom to expose one breast.)  This cancer bra (which I think would work for moms too)  is comfortable enough to sleep in, as I have done.  Post surgery, I find I cannot go without a bra - ever, and I'm pleased to have found this solution.   And if you need to go to the hospital at some future point (knock wood you don't)  you can wear this bra and doctors can have access to everything they need.  I was in the hospital for a week with c-diff, and I had an "over the head"  sports bra on when I was rushed in.  I wore it the entire 7 days.  Yes, it got rank but I'm so happy I had it.  This bra would have been better as I could have removed it for bathing if necessary.

Next up, I'll appear in Victoria's Secret Elderly Mastectomy Edition

The robe's large inside pockets are genius.  They not only hold drains, but are also big enough to carry things you might need.  A remote control,  a phone, a headscarf, just to name a few.  Of course, there are pockets for your hands too, and if you are anything like me and most Herceptin users - it's useful for tissues, tissues, more tissues and used tissues.  The many pockets are not limited to cancer patient items - in them a mom can put a bottle, a pacifier, a toy, a washcloth, a packet of baby wipes.  A college kid can stash a toothbrush, hair products, condoms, tampons and a notebook.  Granny can use it for her glasses, her Reader's Digest,  her dusting powder and her Life Alert.   It really is handy to have those large inside pockets no matter the age group.

There is also a separate shower drain belt, which is removable and which holds post-surgical drains, either for a shower or on the go.  While pinning drains on a tee shirt is a fine solution, I do find that this belt is well-designed and better than pins.  It is nice to have the drain belt and the pockets when you need them.  You can put on the belt and tuck your drains away and you don't look like a Halloween fright.

She didn't forget style!  It has two buttons in the front and a drawstring waistband, giving it almost a trench feel.   It is definitely something you can wear when guests come by and not feel like you are undressed.  And, and it's machine washable.  So far, my dogs' hair (which I think has magnetic properties that defy physics), has not stuck to it, and my dogs are fawn colored and my Brobe is Navy.

In short, this is an excellent product, and not just for a cancer patient. It's just a good robe.   It definitely fills the niche for a cancer patient, and I'm certain the Mommy version is just as thoughtful - but you don't need any special circumstances to find this a good robe.  If you don't have cancer or kids, and are just just living a regular old life, this is the Brobe for you.

So Allison, if this is your baby -  it has good genetics.  I hope that it's out of university and planning to buy you a house!

Allison has gracious agreed to two giveaways!  One lucky person will get the post-surgical bra (good for anybody as I said) and one person will get the drain belt. So if you are reading this and are going to have a mastectomy or know somebody who is, enter to win.  Go to my facebook page to find the details, which will be posted shortly.

Cute enough to entertain guests.

Fits good even for the booty-less.

Disclaimer:  I sometimes review products designed for cancer patients.  I don't get paid to do these reviews,  and I am not affiliated with the companies in any way.  The only thing I have received is the product itself. It would be hard to review something without seeing it,  although you'd be amazed at how many ask me to do just that!  Those of you who know me understand that I believe a product must have value for a patient for me to even consider posting it. I worry about the morality of marketing to cancer patients at a time when they are most vulnerable - on the other hand, I support people who see a problem and fill a need.  So when I do reviews, it's because I think the product does the latter.