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.  

Thursday, August 20, 2015

Review: Suburban Turban, and a Contest

I tried to tuck my hair up..

Now that you have saved some bangs using the Shebangz system, you need headwear.

When you think of hats, you think of the Queen of England, amirite?  Okay, maybe you are younger - so Kate Middleton?   Nobody does hats like the Brits, they have that particular thing all figured out.  Here in the US, in my personal experience, it is hard to find hats that are comfortable and cute.  This is particularly true when you are planning to cover a bald scalp as well as find something cute to go with an outfit.

It's near impossible to find a hat that doesn't leave you looking - well, bald.  Most hats are not designed properly for hair loss, they leave you exposed above the ear or in the back.  In winter, skullcaps, while not always beautiful, will do the trick, as long as you can find a soft and unscratchy one, but for those of us in mild climates, a thick wool pullover won't do.   There are many kind souls who will give out free, hand-knitted one to canceer patients  - but if your skin is sensitive, they may lie unused in your drawer.

Casual girls can just throw on a baseball cap but I was working in a professional environment, and I wanted some style.  Hats that might fit when you have hair will slide around when you don't - a few times I found myself turning my head  and discovering my hat stayed in the same position.   I found exactly one turban style hat that I would wear and that was disappointing.  It was the most comfortable and stylish option and I wanted many of them, but I could only find the one.

The USA and hats, something doesn't mix.

Scarves became my go-to, but they are not without issues either. I had some lovely vintage scarves leftover from my ebay selling days, but silk is, well, silky and you want it to stay in place.  Bandanas are okay but again, not great for a workplace environment and also tend to be scratchy.

Putting something on my head became the hardest part of getting dressed in the morning.  I'd have to start with my hat or scarf and match the rest of my outfit, and my lack of good choices was frustrating.

So as you know: my criteria for review is that a problem must exist and the company must solve it, and that happened to be the case in headwear.

In comes Suburban Turban, a hat and scarf company located in the UK but now selling in the US via Etsy. Remembering my difficulty finding cute hats, I checked the website and was drawn to them. What cute styles!

The hat I reviewed is called Bea, and I love it with hair and I believe I would have loved it more without. (I took pictures with my hair tucked in so you can get an idea.)  It's incredibly soft, yet has strength enough so that you get the feel that it will stay on, even on a windy day. I have a dusky plum with a darker purple lining; but they are available in different colors.  These hats are work appropriate as well as weekend casual.  You might have noticed I talked a lot about how sensitive my head was (not an uncommon problem) and this hat is made of a soft jersey.  They also come in a felted wool. Super, super comfy and cush.   The thing I love the most is they are styled so that that weird, flat look you get in most cancer hats and turbans won't show.  The piping and the flower pattern is going to help to hide that odd shape, and is very clever.  Believe it or not, every hat is made individually!  Purchase from Suburban Turban and you will get a hand-made piece of millinery couture you can use years after the real need is over.

Don't trust my taste? This hat was also featured in Vogue.  They did a special section about hair loss, well worth the read. You can see the Bea hat in two of the video features.

Suburban Turban also has some lovely scarves that are designed for hair loss, and their website has scarf tying instructions.

Leave it to the Brits to design a fashionable hat for women facing hair loss.

Visit my facebook page to enter a contest to win a Bea hat!  Tell your friends.

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.  All three of the products I'll review over the next few days were designed by and for cancer patients.

Tuesday, August 18, 2015

Review: Shebangz, and a contest

(I can't hear the phrase "She bangs" without thinking of William Hung from American Idol, can you?)

Like listening to Hung, losing your hair is truly every woman's nightmare, more so than most any other aspect of chemotherapy.  Being bald hits us in a primal place, one that you don't have to be vain to experience. Most women destined for neo-adjuvent chemo lose their hair and few of us look good bald.   At least, I sure didn't, but honestly, I've seen some bald beauties.

 (For the record, those of us on chemo for metastatic breast cancer may be on a drug that doesn't  cause hair loss - this is important to know so that you don't think somebody is lying if they tell you they are on chemo and yet have a full head of hair.  The length of your hair plays no role in how sick you may be.)

Despite what the movies portray, many of us are able to keep our lives going fully while on chemo. We go to work, go out with friends, have lunch dates, take our kids on field trips or volunteer - yet we have to do it bald.  Being bald pretty much announces we have cancer to all who see us, which can be hard on the psyche of women - even those who have never been much into appearance.  Being bald is a challenge because it means that everybody knows your health status with a glance - or thinks they do.  So one goes bald and endures the questions, sympathy, and stares - not to mention the weather.  Or, one might prefer wigs, scarves, hats, and some even do henna tattooing.  Some do them all, however they feel that day.  Believe it or not, you can have a good bald day or a bad bald day.  "Damn.  This scarf keeps sliding off my head."

One thing I learned is that even with the sweetest vintage Echo silk scarf fetchingly tied, or an adorable roaring 20s style hat, you'll still look a little funny and flat-headed, big earrings aside.  After puzzling about it for a while, I realized it's because no hair is showing anywhere, giving an odd appearance. It's hard to get a scarf or hat to remain completely flat on your forehead and without hair, it just looks a bit confusing.   If you were throwing a hat on for fashion on a normal, cancer-free day, you'd still have some hair showing somewhere.

In comes Shebangz.  There is that problem solving I was talking about.   Shebangz is a handy kit that contains everything you need to make bangs (or fringe for you Brits)  from your own hair.   It is really true that putting bangs on underneath your hat or scarf makes a huge difference to your look, and can take you from "sick" to "style" instantly.   You can buy some artificial bang strips, but they are rarely of good quality and don't come in many colors.  So if you know you are going to lose your hair, why not use your own? For about the same price, you know it's the right color, texture and style.

Shebangz helps you save your own hair and make your own fringe.  You must have 4 inches of hair, but all you do is place a special strip on your hair, pull the right pieces through, use the glue that comes with it, and cut.  You then have bangs made of your own hair that you can wash or curl.  A real human hair wiglet, of your own hair.  What could look more natural?

Because I now have a head of hair, I'm not going to demonstrate it for you, but if you look on the website, the instructions don't look too difficult.  You will need a friend or stylist to do it with you. When I shaved my head, my stylist did it and I'm quite certain she'd have helped.

I wanted to put off chopping my hair - partly because I found the way it came out fascinating, but also because I really didn't want to cut it off.   I procrastinated.  To use SheBangz easily, you may want to accept this hair loss and do it at the right time, because - and I don't know, am just guessing - if you wait until the end when it's coming out in huge chunks, you may not get a nice long strip of hair to turn into a good bang.  During that intense shedding period, it might be hard to pull hair through the holes without pulling it all out, and it might get rather messy in the process.  So do it when you know your hair will go but before it comes out in huge handfuls.

And if you are one of the people who wants to do a mohawk or something ahead of time, no problem.  Get this kit, have your stylist help you with the bangs, and then cut your mohawk or dye your hair purple.  Have fun.

This is a very good, affordable solution to a problem you probably don't realize you will have if you are a first-timer to chemo.  Bangs, and little pieces around the ears, can make all the difference in appearing more normal during your treatment, and looking like you are making a fashion choice rather than being sick.  You can use it or not as you see fit, but why not have it available?  Truth is,  I really wish I'd known about this the first time I lost my hair.  I did buy a fake bang when I was supposed to lose my hair for the second time, and it was cheap, but the color was very wonky.  My own would have been better.

I also would have loved to have a souvenir of the color it used to be.  I saved a breast as a souvenir, why not a chunk of hair?  Who knew it'd grow in grey?

You can purchase the Shebangz here.  It seems to be a one-woman operation by a survivor living in Hawaii, so it's nice to support somebody who has been there and understands.

The good news is she sent me two kits, so I am going to have a contest and give one to a lucky winner.  All you have to do is like my facebook page and follow the instructions that will be there shortly.  I'll have a contest and use randomizer to pick a winner.  Tell any friends who are going to lose their hair to cancer, it doesn't have to be breast cancer.

I have a beautiful product for tomorrow's review.

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.  All three of the products I'll review over the next few days were designed by and for cancer patients.

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.