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.

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 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.