Tuesday, September 16, 2014

Putting the "What's Under Our Shirt" Campaign to Rest

 I received this latter from AirXpanders CEO Scott Dodson today,

Dear Ms. Silberman,

On behalf of AirXpanders I would like to sincerely apologize for the insensitive outreach that you received last week on behalf of our company.  This language was neither reviewed or approved by the company and its trivialization of breast cancer patients worldwide is unacceptable.  As you know, we have worked with Lazar Partners to have this campaign taken down immediately and will not proceed with it or any other campaign in its place.

As a company, we fully support a woman’s right to choose what treatment may be right for them based on their particular situation.  It is equally unbelievable to us that over half of the women who present for mastectomy are never told what their options are for reconstruction; however, through state inspired legislation and the great work at the ASPS, this too is changing.

Nevertheless, the points that you and your peers have brought up are incredibly valid and we will take them to heart in the positioning of our technology at the appropriate time.  Our device simply creates an anatomical space under the chest muscle for a permanent implant following a mastectomy.  In a clinical setting it has shown that it can help patients reach full expansion faster than the technology that is currently used without needles and can be controlled by the patient based off of her comfort.  Any other claim or inference that it can do anything else is unfounded and not supported by the company.

Personally, my mother was successfully treated for malignant ovarian cancer which as you know is genetically quite similar to breast cancer.  She now approaches every mammogram with the fear that she will have recurrence or develop breast cancer independent of her previous surgery.  Equally, virtually everyone in our company has had their or someone they love’s lives touched by breast cancer.  With a 1 in 8 prevalence rate I am sure that it is this way everywhere.

Again, please accept my apology and acknowledgement that the inappropriate and insensitive inferences sent to you and other individuals will never occur again.  In the future we will make donations to charities and foundations that support curative measures and helping women understand their treatment options for breast reconstruction.  

With Sincerest Regards,

Scott Dodson
President & CEO

So I think we can say we successfully let all involved know how we feel about out cancer being minimized, sexualized and reduced to the place where it grew -  and at least one firm will not be using the sexy melon terminology when trying to sell a product to cancer patients again.

So I want to thank everybody who jumped in with me to make our voices known, or who worked with the other bloggers involved who were as outraged as I was at this insensitive social media campaign.

All I truly want is to educate people about this disease and how it should be portrayed.

I've come a long way myself since I started this blog and we can't expect people to get it instantly, especially in a world where pink is used to sell porn, and motorboating women for cancer charities is considered acceptable.  But we have done our small part to enlighten and for that, I thank you all.

Monday, September 15, 2014

BRA Day "What's Under Our Breasts" Update

(Excuse errors and typos, I am having technical issues but I wanted to get the gist of this online)

I received an email from Ms. Hollister Hovey of the PR firm that sent out that crass and insensitive letter.  She asked for my phone number so she could apologize in person and we did managed to speak yesterday.   I expressed my disbelief that a  PR Firm devoted to Healthcare could miss the mark by so much, and I shared how we cancer patients feel about these campaigns.  She agreed that it was insensitive but said that it was intended for early stage women, or women who were doing prophy mastectomies.  I explained that these women also fall under the cancer umbrella and they don't want what they experienced sexualized or trivialized any more than we with metastatic disease do.  I said that if they wanted to discuss how one might appear after a mastectomy using a special expander, perhaps focusing on something other than sexuality was wise - we are a lot more interested in looking at ourselves and not thinking "cancer" than looking at ourselves and saying "I am gonna get some tonight."  There was my contribution to the world of marketing!

She acknowledged that they had gone very off-track, and I think we had a productive conversation. She ended by saying she would like to donate money to the breast cancer charity of my choice (I said StandUp2Cancer and Metavivor) and I offered to be an ear in case they ever wanted to get a cancer patient's perspective.

She followed up with a letter:

Thank you so much for taking the time to speak with me earlier.
First, we want to apologize again for the inappropriate approach and language used in the now-cancelled BRA Day campaign about which we emailed you and a handful of other people. The campaign and note absolutely minimized the seriousness of the issues at hand and lacked the respect you and all women fighting this disease deserve. It detracted from the very honorable core goal of the campaign: to ensure that women who are facing a terrifying diagnosis understand all their options.
We are dedicated to helping you and other patients change the dialogue around breast cancer so that all patients are treated with the dignity they deserve at all times. We fully agree that, as a society, we need to turn the focus to the patient and the cancer itself, away from the organ in which that cancer developed. 
To that end, we will make a donation in your name to Stand-Up to Cancer and METAvivor, charities we know you support, as well as the Metastatic Breast Cancer Network. We would also like to discuss positive ways we could possibly work together to support education that allows women to be fully aware of their options when facing such a terrifying diagnosis and the complex web of choices they will have to make about their health and bodies.
We also absolutely agree that more attention needs to go to innovation and clinical research that could lead to new therapies and technologies that have the potential to help women live longer and make cancer a significantly smaller part of their lives.
We sincerely hope that the mistakes made with this effort can lead to a positive dialogue about how women living with and fighting breast cancer deserve to be treated.
Hollister Hovey. Lazar Partners Ltd.

So I congratulate Lazar Partners for withdrawing the campaign and listening to our voices.  (Although where this idea that women don't know their reconstruction choices came about is beyond me.  In my experience, everybody knows what is available.)

Many of us received the below letter from the American Society of Plastic Surgeons:

Dear Ms. Silberman
Thank you for calling to our attention the highly inappropriate campaign which improperly references the Breast Reconstruction Awareness campaign.  We have taken action to demand that this social media campaign be halted immediately and have disassociated our Society from this campaign.

The Breast Reconstruction Awareness Campaign was created to educate and empower the high percentage of women and men who are unaware of their reconstructive options and rights following mastectomy.   It was initiated to support those who have fought legislative battles for reconstructive options for many years.   The campaign also raises funds to provide medical care for breast cancer patients as well as for scientific research and public awareness.  There is no commercial aspect to this campaign.

As physicians, our members will not accept the trivialization of breast cancer in any manner.   Our members provide post-mastectomy care as an integral part of the breast cancer patient's medical team and only wish to provide the best care possible once the patient has been fully informed of all treatment options.

Thank you, again, for informing us of this campaign and feel free to contact us if you wish to discuss further.    Please accept our deepest apologies for the insensitive language to which you were subjected.


Robert X. Murphy, Jr., MD

Michael D. Costelloe
Executive Vice President

Friday, September 12, 2014

Bra Day, another metastasis

I was stunned to get this in my inbox today.

Dear Ann,

Boobs are so much more than just “the girls” or “melons.” They’re fabulous. They make us feel sexy, whether we’re in our best outfit, lounging around in our favorite flannel PJs, or just bare butt naked. This fall, we want to spread this sensation of beauty and breast empowerment to breast cancer patients and survivors, as well as women nationwide.

Many women who undergo mastectomies aren’t adequately informed about breast reconstruction options and reimbursement.  In order to help raise awareness of these available options, we’re celebrating National BRA Day 2014 (October 15), in affiliation with the American Society of Plastic Surgeons, with a grassroots social media campaign using the hashtag #WHATSUNDERHERE.
Each participant receives a t-shirt with the #WHATSUNDERHERE hashtag on the front. In addition to the t-shirt, each kit comes with a set of cards with fun and thought-provoking sayings, such as: “Is Cancer Free,” “Looks Great Naked,” “Will Not Take Cancer Lying Down,” among others.

AirXpanders – a local Bay Area company developing a new, patient-assisted, needle free tissue expander for breast cancer patients following mastectomies – invites you to join us for this exciting campaign. Breast Reconstruction Awareness (BRA) Day is an annual event in celebration of women who have undergone treatment for breast cancer, and to promote education, awareness and access regarding post-mastectomy breast reconstruction.

If you’re interested in participating, we’ll send you a #WHATSUNDERHERE t-shirt and social media kit so you can help get the discussion going on Instagram, Facebook, Twitter and Pinterest throughout October Breast Cancer Awareness Month.

We want as many people as possible to put on the shirt, choose a phrase (or make one up!) that describes their situation and then post a picture of it to their favorite social media platforms.

AirXpanders will post its own tweets and posts as well as retweet and share content from the individuals posting photos.  We hope the campaign will be a fun way to spread awareness of reconstruction as an option that mastectomy patients should discuss with their doctors.

Let us know if you’re interested and we’ll get the kit out to you in the next two weeks!

Best regards,

Liz Lieber

Elizabeth Lieber
L A Z A R   P A R T N E R S   L T D
420 Lexington Avenue, Suite 442
New York, NY 10170
646-871-8486 (direct)
212-867-1762 (main) ext. 486
212-867-0856 (fax)

As you can see, this is yet another campaign to sell product (AirExpanders) to cancer patients under the guise of helping us.  This company wants us to ask our doctors for this type of expander so they can sell more of it.  Make no mistake, it is not designed to help us, it is designed to help them.

Almost worse is the insensitive language they use.  Once again, it is all about breasts and sex and nudity and "melons."  There is no mention of disease, suffering and death in there, which is what cancer is really all about.  Once again, it is the trivialization of breast cancer.

So I wrote back.  The letter is below.  But this time I am giving you all an action item:

1. If you see any of these hashtags, I want you to use the hashtag back #mycancerisnot4sale.  I want you to use that hashtag every time you see any of these facebook games or anything in October.  If you like, point people to my blog or another blog to educate them about what is really going on.

2. I left the name of the person who wrote and presumably composed this horrible letter at the bottom so feel free to contact her with your thoughts.  (Trust me, this is not a private letter, many bloggers received it).  

3.  I want you to contact the American Society for Plastic Surgeons and let them know how you feel about "Bra Day.  Let them know you are sick of the disease of cancer being reduced to the part of the body in which it appears.

The Executive Vice President is Michael Costelloe, (847) 228-3336. Email is mcostelloe@plasticsurgery.org.
Heather Gates is the Director of Communications, (847) 981-5408, hgates@plasticsurgery.org. Maureen Jouhout is the Senior Manager of Marketing and Communication (847) 709-7501 mjouhet@plasticsurgery.org.
The Board of Directors President is Robert X. Murphy, Jr., MD (His email address is not listed but in keeping with the way they do things it may be rmurphy@plasticsurgery.org.

4.  And, we must contact AirXpanders, the company who is trying to viral market this expander product in such an incredibly crass way.  They are reachable via twitter.

Scott Dodson, President & CEO
Barry Cheskin, Co-Founder and Chairman of the Board
Twitter:  @Airxpanders

AirXpanders Inc.
1047 Elwell Court
Palo Alto, CA 94303

650.390.9000 Main
650.390.9007 Fax

Here is the letter I wrote to the PR firm:  

Dear Liz,
Over the years, as I have struggled with my terminal disease (breast cancer that has spread to my liver) I have heard some crass and insensitive pitches.  But yours is right up there with the worst of them.

Not only will I not be taking part in selling product under the guise of educating women about their reconstruction options, I will be actively fighting against this.  As a woman who has nearly 2 million hits on her blog, who has 4 thousand facebook likes and 1600 twitter followers, I will be starting a campaign against this insensitive "bra day" and all other pink awareness campaigns like it.  We will be tweeting out #mycancerisnot4sale each time we see this ugliness, and will be pointing out the hypocrisy and insensitivity to everybody we know.
Breast cancer is not about breasts, or sex, or, God help you, "melons."  It is a horrible disease that takes the lives of good men and women, like your mother, like your sister - like me.
In the past three years, I have done 7 different chemo drugs.  I have done 3 targeted drugs.  I have had half my liver removed to try to remove the cancerous part.  I have had part of my liver ablated.  When those things didn't work, when cancer grew back,  I had gamma knife radiation.  I got sepsis and was seconds from dying and it took months to recover.  And recover for me does not mean health.  I have lost my job, my son has grown up with a terminally ill mother - I've lost my body and I have lost my energy.  Reconstruction and breasts is the least of my worries and is the least of the worries of most of us who get this disease.  
You are going to find a lot of pushback against this horrifying campaign on blogs, on facebook and on twitter. You can read my blog at http://www.butdoctorihatepink.com to see this campaign highlighted soon.  In the meantime, please read this post and educate yourself.
Women with metastatic disease have long known how cruel it is to use our disease in this manner, but we are finally getting newly diagnosed women on board. We are joining together to unfurl the pink ribbon and put it away for good.   It is time our disease is not used as a method to sell product.   I will also be contacting the American Society of Plastic Surgeons to explain our position.
What is under our shirts are scars and pain and physical manifestations of the torture we have experienced to stay alive.  What is under our shirt is the knowledge that our children will lose their mothers, that our husbands will be alone.  What is under our shirt is sorrow that we will miss weddings, graduation, grandchildren.  What is under our shirt is strength and power.
What is not under our shirt is "melons."
You should be ashamed.

EDIT:  Here is the letter I wrote to the emails I had for the American Association of Plastic Surgeons.   Please feel free to take what you like to create your own letter.

Dear Mr. Costelloe, Dr. Murphy, Ms Gates and Ms. Jouhet,
Today, I received an incredibly offensive email regarding something called Bra Day, which apparently your organization is associated with.  Not only is this social media campaign unprofessional, hurtful and quite insensitive - coming from an association of physicians it is actually astounding.  
Isn't it unethical to use a disease to sell a reconstruction product in this manner?  Are plastic surgeons so interested in money that they will stoop to anything?  Can you imagine how it feels to have end-stage breast cancer and receive an email discussing "melons," being butt naked, and be offered cards that say "looks great naked."  Your organization, of all people, should know that is impossible - and not really the focus of our treatment to begin with.  
Do we do this kind of thing with ANY other disease?   What kind of other cancer reconstruction do we have social media campaigns to sell product for?  Do you sell drool products for facial cancer patients with cute hashtags  like "stoptheflood?"
  (I put the letter I wrote to "Liz" above right here)
And, you should be ashamed as well.  Many of the bloggers who received this email are horrified and posting its disgraceful contents.  Many are crying.   All feel like this campaign has nothing to do with those of us with cancer.
My blog is here:  http://www.butdoctorihatepink.com, and I have posted all the communications as well as your contact information.  This is spreading like wildfire through facebook and soon twitter and I have posted your information so that others can express their displeasure.  It is time that we treated breast cancer like the disease it is, and not like a big pink sex toy.  If we can't expect that from marketers, we should CERTAINLY be able to expect it from our physicians.
I am respectfully requesting that this campaign be stopped now, that you will not be a party to selling any product to breast cancer patients,  and that you put out a statement stating that you will not be participating in anything called "bra" day or any kind of social media campaign that diminishes or disrespects breast cancer patients.

And firing this company would be nice too.
I will await your reply,

Ann Silberman

And, because AirXpanders does not have email, I contacted them through their page and sent them here.  And, I will find them on twitter and tweet this page to them.  You do it too.  @airxpanders.  Marketing to cancer patients in this way is reprehensible.


Tuesday, September 9, 2014

Pinktober, Metastasized

For weeks now, I have been getting emails from PR companies that start like this,

Dear But Doctor I Hate Pink,
With Breast Cancer Awareness month fast approaching, we wanted to take the time to introduce you to our product, the Pink Crapola JunkYouDon'tNeed.  10% of the sales of this very special Crapola will go towards Useless Awareness Charity Du Jour, which we are proud to say will do absolutely nothing to help any actual breast cancer patient, but which will certainly line our client's pocketbooks with profits as well as giving them a tidy little write-off.  Will you please promote it without even a review sample, so that we can have some free advertising too?  After all, it's for your kind.

WeDontCareAboutYou, Inc.

Pinktober used to be only in October, but now, like all good cancers, it is spreading throughout the rest of the year, metastasizing, taking over, strangling functioning parts, and making cancer patients vomit all year round.

Not only does the pink takeover disturb metastatic breast cancer patients, who understand that this cause marketing is not their cause, it also disturbs many knowledgeable early stage women, who are reminded of their suffering year after year, and who also understand that the money does not go towards a cure.  And, of course, when the White House is lit pink,  people with other cancers, such as lung, colon, and ovarian feel like the only important patients are breast cancer patients, and that our discomfort is elevated over theirs.  They don't know we hate it too.

I am trying to be the chemotherapy to this metastasis, slowing it down or stopping it, and the only way that will work is if we all combine our molecules to gain power. We must refuse to cooperate in the big pink scam, refuse to buy a pink ribbon product and let the companies know why. We must share information about mets and the uselessness of the idea of awareness with everyone we know. We have to beat them at their own game.

This October is the first one in years that finds me in decent health, thank you Perjeta, Herceptin and Dr. B.  In the coming month, I'll be devoting this blog and my facebook page to sharable information about metastatic disease as well as facts about how the pink charities do not help save the lives of breast cancer patients and in fact, seem to be doing harm.  Along with other metsters, I am going to point out foolishness, hypocrisy, greed, lies, insensitivity, and what I call "the don't get it itis".

Sound exiting?

Let's start now, shall we?

I was sent this little nugget of awareness by a facebook friend. Because she may be treated at this cancer center, I don't want to name her.  But she was passing by and saw this little gem:

Do you see what that is?  It is a bra decorating contest. "A breast cancer prevention event."   One put on by a hospital, the Cheryl Lindenbaum Cancer Center, to be exact.  For awareness, of course. You can enter the contest and make your mammogram appointment at the same time, because mammograms and decorated bras and contests prevent or uh, make you aware...or ...uh....wait, what?

Aha.  Found a press release put out by the hospital.  Explains it all.

According to Anne Campbell-Maxwell, Director of Oncology Services,  “We are asking people to decorate a bra as a way to tell their breast cancer story, whether it’s their own story or the story of a friend or loved one. The bras will be judged the night of our big event. It’s a fun night that we hope will educate the public on prevention and early detection of breast cancer.’’

I don't know what to say.

Wait, yes I do; you know I do.

Somehow, this hospital decided decorating bras is a breast cancer prevention event. This is alarming news to those of us who have preferred plain beige and black bras.  No wonder I got cancer. Damn. Why didn't I go for the sequined ones?  I might still have both breasts and have avoided five years of awful treatment (so far) if I had just gone blingy.

But hey, at least I can tell my cancer story, right?   I can jam five years of treatment and a terminal diagnosis into one 36C decorated bra. (As long as I don't forget the straps.)   At least the bra is my (former) size so maybe I still have a few tucked away. Hmmm... I'm not sure how I can get the c-diff sepsis in there though, or the liver surgery.  Some stories require a 38DD.

All jokes aside, it is infuriating is that this woman, a Director of Oncology Services, (whatever that is)  says they are trying to educate women on how to prevent breast cancer.

Okay, Anne. How?

Um hmm, that's what I thought.

Prevention is a Myth
Hospitals should know there is no way to prevent breast cancer.  Saying otherwise is an irresponsible statement, and it's no mistake by this cancer center, it has been going on for 3 years.

The fact is, science does not know what causes breast cancer.  Sure, there is the nasty BRCA genes, which can strongly indicate that breast and ovarian cancer might be headed your way, but even in that population, not everybody gets cancer.  For the vast majority of us who do not carry the BRCA gene and who got breast cancer anyway?  It's a mystery.   Despite shady websites telling us otherwise, it is not what we ate or drank or where we lived, it's not chemicals we inhaled, or petting our cat too often or wearing plain bras.  

Nobody knows.  It's likely a complicated mix of all of the above, with a dollop of bad luck.  Cancer, my friends, has been around since the dinosaur days and they have found breast cancer in Egyptian mummies.  It's just as wrong to state you know what causes it as it is to pretend that the cause is from chemicals in your hair gel (so buy my natural gel). It is infinitely worse coming from a hospital rather than somebody trying to profit by selling you a book, because the level of trust is much higher.

Location, location
It is peculiar to the breast cancer world that the location of our cancer becomes the focus of the cancer, over the disease itself.  So yes, charities decorate bras for cancer, and men try to motorboat women's boobs for cancer awareness (ha!), and people make breast shaped cupcakes.  This all trivializes the cancer experience, especially for those of us who have mets.

Nobody ever made a liver cupcake for me.  Maybe it's because it's hard to cut a cupcake in half. Thank God my surgeon could do it.

After 7 different chemos, having half my cancerous liver removed, gamma knife radiation to the remaining half, sepsis,  and a few other drugs and surgeries sprinkled here and there - after five years of being truly, horribly sick, I can tell you that it is not a cute, fun little disease that you can play with or have a party about.  Breast Cancer is the most trivialized disease in history. Precisely because of events like these, many people don't understand that we are still dying.

Including the Director of Oncology Services at a hospital?  Why is a hospital associating bras with breast cancer?

I wonder if this cancer center does this with other undergarments in relation to other cancers?  After all, their tagline, "Jazz Up your Foundation" fits many cancers.

Do they have a tighty whitey decorating party for anal cancer?  Let's put a little brown glitter around the back end of the underwear, hey?  Maybe some red sequins to show one of the signs that cancer lurks in that area?  Yeah, let's tell that cancer story through decoration.   Or, how about decorating a banana hammock for testicular cancer?  I'd cover mine with ping pong balls, perhaps using a bit of blue embossing powder.  Of course, the obvious choice is decorating a hat for a glioblastoma.  Wouldn't that be fun?  I think I'd pick a fedora, cover it with grey sequins and then use the aforementioned glitter, this time in red, to add in a tumor.  I would add some streamers to symbolize the seizures that are sure to come.

How delightful!

When so many women's bras in real life are decorated with nothing but a prosthesis, a hospital should be a bit more careful about what they decide is "fun," don't you think?

It's not only a party to tell one how to prevent breast cancer, it is a contest.  I wonder what the prize is?  Oddly, they don't say.

If you turn in your decorated bra (don't forget the clean margins edge decoration!)  and sign up for your mammogram, and it turns out you have cancer, will they give you half your bra back?  They say you are allowed to use glue, but what about glues with chemicals?  I mean, they have the prevention secret, they should know if that is safe or not, right?  Maybe your prize is a free PET scan; certainly, that is valuable.

If this hospital or charity relies on donations and they are spending money on this, is this the best possible use of funds?  If I donated to them, or their partner charity, Support Connection, I would think twice.

How does decorating a bra help help people become aware about how to prevent cancer, Ms. Campbell-Maxwell? Because, I truly do not get the connection.  Why bras?  Why not a canvas, or a quilt, or a scrapbook page?  Cliche much?  What about men who get breast cancer, do they still tell their story with a bra?  Or are you totally leaving the men out?

We know you can't educate on prevention because nobody can prevent cancer.  You can talk about screening and early detection, but what do you think about educating people on the tragedy of over-treatment?  

What does a Director of Oncology Services do?  Can you get me a pedicure while I'm having my infusion?  If you are responsible for patient support, what do you imagine metastatic women who have suffered for years and are dying think about your bra display party?

That their own hospital thinks they could have prevented their cancer, maybe?  That you think they are at fault?  Supportive.

I posted this event on my facebook page, and within minutes after posting, these are the words that appeared: sophomoric, patronizing, crass, disrespectful, undermines the real pain and suffering of women, ridiculous, out of touch, shocking, tasteless, absurd, tacky, stupid. And that was just the start.

Those words would apply to anybody throwing this sort of event, even for charity, even for a worthy charity (this is not a charity event), but there are times you give credit for ignorance mixed with a big heart and you let the big heart win.

When it is a hospital, it is inexcusable.  Hospitals are supposed to be about science, and include ALL patients.

Apparently, it's all about the breasts, even in a hospital, even from the Director of Oncology Services.   It is not about a tragic disease that has taken good people:  my friends, your mothers, your relatives, loved ones, sisters and brothers.  It's boobs and bras.  When will the trivialization of our very real disease end?  Who will be brave enough to stand up and speak up and say enough is enough?

You, that's who.

Welcome to Pinktober, Metastasized.

Monday, September 1, 2014

Three Book Reviews: Mani-Pedi Stat, The Art of Adapting, Living Without the One You Cannot Live Without

I love to read and always have.  Unfortunately, I have had some difficulty the past few years.  I think chemo-brain has made reading a struggle:  concentration, memory and the ability to stay awake are all critical skills when reading a book.  After my 3rd chemo, my taste had changed from New York Times Notable books to Chick-Lit and YA, after my 5th chemo I could only manage newspaper cartoons and after my 7th chemo I was down to BuzzFeed click bait.

Cancer definitely changed my brain.

I've been feeling a bit more normal and back on track, able to concentrate slightly more than a year ago.  I am not back to full-functioning and I suspect I never will be again, after all, I will be on treatment for the rest of my life.  But still, it is nice to complete a book again, without my mind wandering, without the sudden inability to remember who the characters are, and the distraction of putting the book down and forgetting where it was and then when finding it, having to start all over because I'd forgotten the plot.

As a world famous blogger, people sometimes ask me to review books.  I've been saying no to these offers for a while for the above reasons.  Sadly, I have disappointed a few authors and one even a friend, by promising to read their book and review it, and then totally forgetting my offer and that the book existed. Whoosh, just gone from my mind.  I certainly don't want to keep that up, I do have integrity. Sometimes you don't realize you can't do something that you used to do until you have had some fails - that's the charm of chemo, my friends.  So I decided just to say no to all books.

And, the offers dwindled, and all was well.

Recently, somebody new in the PR world found me and asked me if I wanted to read and review some books.   I decided I was feeling better, clearer, and more able to concentrate, so I said yes.

We have to adjust to our disabilities, right?   So knowing I am super forgetful, I put the books in a special place before I read them, so I would know where they were - not in my book filled library. I read them in one location so I wouldn't lose them - none of this moving from chair to bed to chaise carrying a book around for me, that's a sure way to loss. And, because I tend to forget the plot immediately after reading it (and sometimes during) I took notes on a piece of paper that I left in the book so when I was done I could review what I thought when I read it.

Finally, I decided to review all three in one blog post so I wouldn't have to remember which one I'd done already.

So I had success this time, and you will see it below.

 Mani-Pedi Stat, by Deb Ebenstein.

This is a memoir by a "Jersey Girl" (that must mean something beside somebody who lives in New Jersey, right?)  who got Hodgkin's Disease when she was 16.  At that tender age, she had to face her mortality, a difficult thing to do at any age, but life-changing as a teenager.  She also had the painful treatments we all know too well - the hospitalizations, chemotherapy and radiation. Because of her changing appearance, bald and bloated from steroids - hard on a woman of any age but traumatic for a teenager - she focused on painting her nails as a way of hanging onto normality.

That is the running theme of the book: no matter how bad she looks or what cancer does to her, she can have the normality of a perfect manicure.  (Her nails didn't fall out like some of ours do, thank goodness.)  She becomes a "cancer citizen" and learns the rules of living with her disease, the lingo, and how to navigate through this medical lifestyle.  That is her youth, as it has been my middle years.

As she finishes her treatment and puts cancer behind her and goes off to college, she ends up being a party girl, living a "toxic" lifestyle, an outward manifestation of what she feels cancer and its treatment has done to her.  With help, she realizes she is using this lifestyle to hide behind her feelings over her  lost childhood.  And, as you might imagine, she has a second bout of cancer, this time breast, and comes into her own, dealing with it like a pro while managing a family and life and, of course, polishing her nails to perfection.

While this book is described as laugh-out-loud funny (who thought up that cliche anyway?) it is not. There were amusing parts, and I wouldn't call it a heavy book but it was more on the serious side, I thought, maybe because I have special inside knowledge into what she experienced.  There were sections that I did recognize as being very true and that anybody who has experienced cancer will relate to, especially the parts where she gets over the anguish of cancer discovery and learns to live in cancer world, and then has a difficult time transitioning out.  I think we all experience that to some degree, no matter the length of our treatment.

It is a highly readable coming of age memoir with cancer as the change that spurs growth. My only nit was I thought the author could have used the nail gimmick a bit more forcefully considering it is the name of the book and part of the cover - it seemed to be strong first and then petered out.  But I got an unedited version of the book and perhaps changes were made.    I truly liked the metaphor of the polish equating to her sense of normality.  I highly recommend this book as a light and real read that describes the cancer experience with truth.   I read it in two sittings.  

Because she does well and makes it through, I think the book with a few bottles of nail polish might be a good gift for anybody who has been recently diagnosed.


The Art of Adapting by Cassandra Dunn

This family story is told from four different viewpoints:  Lana, mother of two whose husband just left her, Matt, her brother who has Asberger's Syndrome, Lana's son Bryan, a teen struggling to find himself, and Lana's daughter Abby, a former honor student who is now struggling with an eating disorder.

Despite the fact that alternates voices, I found it easy to follow and quite an entertaining book. This was another one I read from start to finish.    Each character's voice was fresh, their individual story was intriguing and the way the author wove them all together to change them from a family in crisis to a family that learns to lean on each other was masterful. Each person had a tightly woven character that made me want to root for them.  Matt with his autism was the most amusing, with his odd ways yet observant and kind personality. The boy, Bryon, with his dream of being a Parkour expert and finding his way with girls was also an excellent character. Abby's eating disorder seemed more muddled to me, and the way her Uncle helped her through it was unique. Is it great art? Maybe not, but it is a good read and a wonderful way to spend a Sunday afternoon.  I would definitely read another book by this author.

While Lana finds a lump and has a cancer scare, it is not integral to the book and completely unrelatable to somebody like me who has end-stage cancer, so I only mention it because I believe that's why it was sent to me for review.  It is not a major plot devices and is really only a few sentences in the book.  The point is, this family has many secrets that they all learn to share to become a family.

I would recommend this book as a good novel for somebody who wants to take their minds off their day-to-day lives. It's a nice, summer, beachside read, or a nice cozy autumn fireplace read.   You can buy it in hardback, or in kindle.


Living Without the One You Cannot Live Without, by Natasha Josefowitz, PhD.

When I was offered this book, I was a bit hesitant.   It is poetry, and poetry has never been my genre.  Finding out that the woman who wrote it is in her late 80s made me change my mind.  I know that she has wisdom about life that many of us do not have, and a perspective that I likely will never get.  It is a book about grief and loss; her husband died of cancer and she described her feelings in poetry.  So I said I would read it and review it, as I know that grief is part of the cancer experience for far too many of us (and our families).

I'm very glad I left my comfort zone and read this book.  I am unable to judge good poetry from bad but I have to say, I really found this book moving.  She takes us through the early days of shock at her husband's death, to grief, and finally to acceptance and moving on. Her first poem describes how she feels, lost, not in the center of anybody's world any longer, at the periphery of the lives of others. She goes back in a couple of poems to describe the hospital experience with her husband, the stress of surgery, the realization that hospice is next.  Sadly, his death is just a sentence or two but very profound. She works through emotions and finally, acceptance comes, as it must:

"I used to dread
coming home in the evening
to silent, empty rooms
feeling so terribly alone
tonight for the first time
I looked forward to
some quiet time
in my quiet home
after a busy day
sitting down to read my mail
checking my computer
sitting down with a book
sitting alone
without feeling lonely
something has changed"

I highly, highly recommend this book for anybody who is going through the grieving process.  I believe it will help somebody feel less alone in their own grief, and also know what will come. Whether they feel angry or sorry for themselves, they will know they aren't alone in those feelings. It also is a very short read, one sitting for me, and the poems, as I have demonstrated above, are very accessible.  I believe that she gets to the heart of the feelings of grief.

If you don't know the right words to say to somebody who has suffered a terrible loss, perhaps just a card, a hug, and this book is enough.

Thursday, August 28, 2014

Save Your Brows - Tip for Chemo!

If you are starting chemo for the first time, or have just started it, this video is for you.  It is my very own invention, and if there was any way to make money on it, I would. I do, after all, have a child starting college in one month.

And is that ever going to be a blog post.  A long, whiny, tear-filled post.  And I won't even be talking about the money.  Yet.

Anyway, since there is no way to capitalize on this idea, I figured I would just help a cancer sister (or brother) out.  In return, please like this video and/or subscribe to my YouTube channel.    I think it's time to prove that YouTube is not just the realm of the young, beautiful and well-lit, don't you? Why can't the old and sick have sponsors and fights with other YouTubers and all that fun stuff?

Typically, if you are on a chemo that causes hair loss (and not all do) your body hair falls out first, and the eyelashes and the eyebrows are the last to go.  You may be lucky and keep some of your brows but if so, they will look like vague shadows of their former selves and will not be defined enough to recreate them well.

My eyelashes hung in there - two of them.  They looked like spikes sticking out of my lids. Why I didn't pull them out I don't know; maybe it's the same reason I kept one of my breasts.  I wanted a souvenir of what had been.

But then why don't I dye my hair back to its "real" color?  Life is a mystery, girls.

Please share this tip because I do believe it will be helpful for many a cancer newbie;  they might appreciate it more than you know.  Losing your hair is something we can manage and deal with but losing your eyebrows and lashes - that is what really makes you look sick.

Even at the "look good, feel better" class I didn't see this idea mentioned and hey, they taught us to make a hat out of an old tee shirt!

I do believe it is my great contribution to cancer society.

Saturday, August 23, 2014

My Bid for SXSW - New Video and Vote!


Have you voted for me to be on a Panel at SXSW yet?  David Kopp from Healthline and I want to talk about what it would take to reach for a cure for cancer, and what today's modern, empowered patient can do to help achieve that goal.  Surprise, dumping a bucket of water on your head is not part of the plan!  

To vote for me start by going here:


Create your account.

They will send you a confirmation email.  Once you click on confirm, you can vote for me here:


Click the thumbs up icon to the left.

Also, if you have a registered Disqus account, you can log in with that and leave me a comment. If you answer some of the above questions in the comments I can include your viewpoint in what I say at the SXSW panel.  I will be acting to represent all cancer patients, not just myself, so your point of view is important to me.

For some reason, I couldn't do a direct YouTube link to the video in this blog, so I had to save it and then reupload it.  If you want to commont on YouTube, click here:  https://www.youtube.com/watch?v=weCVRZbgIWo