Interview with me

The gals at Scarves Dot Net did a nice interview with me about my feelings about Pinktober.

Because of the item they sell, they wanted to get in on the Pink October stuff and possibly do scarf giveaways and the like.  The email I received said they wanted to, " incorporate ways to be more vocal for the month of October. We are currently working towards building a relationship with an organization where we can donate scarves to women in the midst of the battle. Also, many of our customers are victims of breast cancer and requested that we show them creative ways on how to tie head scarves.  Through working with them and being inspired to help raise attention, we were hoping to share personal stories so our audience could be as touched by as we have.  

I responded by reminding them that women get breast cancer and lose their hair all year long, and places like FranceLuxe manage to give breast cancer patients a free scarf whenever they need one, so that I hoped that the organization they worked with would take that into consideration.  I also said that my feelings about Pink might not be what they were used to.    They assured me that they were going to support breast cancer patients year round, not just for pink October and were interested in my thoughts.

They seem to mean it as they put the promise right above my interview.  

I'm holding them to it!

In my interview, I share my feelings about Pink and October and just generally what has happened to me over the past three years. There are also photos of me and my family.   And, then once you do read it, leave a comment and click around their website because it does have some great information.  People are always asking me about how I learned to tie all my scarves the way I do, and the reason is websites like these that give instructions.  It's been three years, but maybe I even learned from Scarves.net.  I always get compliments on my scarf tying.  Even when I don't need one, I still put them on for style.

I will be using some of their other examples, like using scarves on my shoes, now.  Maybe it will help me with the bug situation.

Thank you for the nice interview and a helpful website.

Pinktober

I have already done my rants on the fakery of this month.  Now that you know not to pink, know to stay far away from anything that says "awareness," you want to give your money where it counts.

Nationally, I support:

1.  StandUp2Cancer.  All money goes towards research.  They have a no politics, no commercial side-tracking, no distraction, no nonsense way of solving the problem of cancer. Smart people fixing things; that's all it takes.  Lots of TV and movie stars are on the bandwagon for this one; it's cutting edge.  Awareness is dead, pink is old guard -  let Research live!

2.  ACS.  Yes, they are a big complex machine but they do donate to research and they also do a lot of direct patient support for people with every kind of cancer.  They helped me in my early days and they provide a ton of valuable information and support.  I can't say no to this one.

3.  Metavivor.  Focused purely on finding a cure for metastatic breast cancer and 100% of your donation goes towards a research grant.  No kidding.

There are a few groups in your community I want to give a shout-out to:  Living Beyond Breast Cancer is holding a fund-raiser in Philly.  Their paper did a nice piece on me, and I received a press release about this event.  I don't normally post these locally-based requests as I would get far too many.  Although I have readers from all over the world, I live in Sacramento and can't check things out in other areas for myself, and don't want to steer you wrong.  However, this seems like a good thing for woman in that area so I am making a one-time exception:

Philly Friends, including Marc and Bob and others -  read up:

Bruce Cooper, owner and chef of  Jake's and Cooper's Wine Bar, has announced he will host a special fundraiser Wednesday, October 17, 2012 from 6:00pm – 10:00pm to benefit Living Beyond Breast Cancer’s Cis B. Golder  Quality of Life Grant. The grant provides financial assistance of up to $2,000 to women in the Philadelphia area diagnosed with
breast cancer, with priority given to those in active treatment or who finished treatment in the last year.  “In honor of my wife and mother, both of whom have personally been affected by breast cancer, 100% of the evening’s proceeds will benefit LBBC and the Cis B. Golder Quality of Life Grant. Party guests will enjoy a myriad of one-of-a-kind hors d’oeuvres, drinks and live music while helping local women diagnosed with breast cancer.

To date, Cis B. Golder Quality of Life Grant has donated a million dollars to help women cope financially with breast cancer, and it sounds like a fun night and a good cause for my friends in Philidelphia.  And, for women in that area who didn't know about this help, you can contact Living Beyond Breast Cancer and find out how to apply.

I also want to mention "Mother's Grace" a foundation based on Phoenix, Arizona that has helped me personally.  They support Moms and Children who are going through overwhelming life circumstances.  They will provide day-to-day support, help with medical costs, groceries, housecleaning, vacation money, etc.  They sent me a slew of gift cards from various businesses for my recent Arizona vacation, that has really been an invaluable help and took the financial pressure off us as we enjoyed our vacation.  Click the above link or like them on facebook  https://www.facebook.com/pages/Mothers-Grace.

One day, out of the blue, a box arrived.  Inside were some hats, very cute, knitted hats.  No note but a card saying they were from Love Caps 4 Cancer.  I wrote to the email address to thank them, and while they wouldn't tell me why I got the hats, they did say they send out over 400 hats a year.  I have hair off and on and when it's off, warm and cute hats come in very handy, you cannot believe how cold a bald head is.   I am sure that if you contacted these folks, either to donate a knitted hat or give them some yarn,  they would appreciate it.

I am going to do a blog post about this separately, but my good friend just came from Utah to redecorate my bedroom.   It was, frankly, an ugly mess, and now it's a peaceful sanctuary and will be a nice room in which to spend my final days (which I hope are years away).  She has carpentry, electrical and other skills, so my room got a real makeover, with new lighting, trim, windowpanes, etc, aside from new decor.  It was all done in a weekend and is amazing.    Photos to come.  She is interested in starting a non-profit and doing room make-overs for other people with catastrophic illness, so if anybody has experience or advice in how to go about starting a charity and things she needs to be aware of, please post it in the comments. To my knowledge, nobody does this specifically and for those of us who end up mostly home-bound, it is nice to have a clean, wonderful retreat in which to spend our days.

And, finally, and most important, each and every one of you has the power to save somebody's life, by donating to the marrow bank.  It's easy, painless and quick.  Read my post here for detailed directions and then just go do it.

Bugs

So, after about 500 blog posts, you think you know everything about me, right?

Well, here is something you may not know:  I hate bugs.

No, it's deeper than hate.  It's terror. But, not only that - a combination of terror and disgust, is what it is.  With a little horror thrown in, and a lot of urping noises.

This goes for what most people call your more attractive bugs too.  I'm as likely to scream if a butterfly lands on me as if a cockroach does.

I know why too.  There is no mystery about where the disgust comes in.

It's their legs.  Their skinny, horrifying, wiggling little legs. They are thin, like hair, too threadlike to hold up the fat bodies some of these creatures have.  There are too many of them.  And, some legs are hairy and some have spikes but all are just pure puke-inducing.  Did I mention that they wriggle?  And, if you step on the bug, it doesn't stop the thing from squirming; it's just causes post-death restless leg syndrome.

*shiver*

So, nobody is allowed to step on bugs in my house.   Or kill them in any manner, because of the problem of leftover legs.

In fact, they must be carefully moved, alive, put outside, which is my husband's job.  Not only can I not stand the thought of a convulsing insect leg left somewhere, but I also kind of think that, gross and alien as they are, they have a right to their repulsive little lives too.

But mostly it's the legs.

The other day, after my new iPhone five (smirk) arrived in the mail, I went to Best Buy looking for spare chargers. Outside the store was the biggest, uglist, Floridianist bug I've ever seen.  That thing was shiny black, beatle-like, and about as big as Paul McCartney.  No California bug looks like that; it was clearly a Chinese import, fallen from a box.    I shuddered and stepped around it. My motherly instincts kicked in, and I yelled at my younger son to do the same, to stay away.  I went into the store.

(Younger Son ignored me, by the way, and took a photo with his phone, which I will not post here because I don't want to see it again - it's already in my nightmares.)

Soon though, I was lost in the magic that is Best Buy, the smell of electrons washing over me, soothing me, making me forget all about the horror outside.

They were out of the iPhone cables, as was to be expected right after release day.   We also wanted to buy a case for my son's HTC phone so we accomplished that much, and then left.

As I went out the door, in my slight ballet flats, I decided to call my muscular older son.  I had a piece of furniture that needed to be moved and I thought he could meet me at home.  If I left Best Buy right now, and he left his house right now, we'd both be at my house at the same time.

I used Siri,

"Call Older Son"

"Okay.  Calling Older Son"

As the phone rang, I walked to my car, and I heard a crunch.

And, I knew. Immediately.   I knew what it was and what I'd done.

I screamed.

Now, maybe you have known somebody like me, who doesn't like bugs, and who screams when they have to interact with one. I know I have a special "bug scream" that is more high-pitched than if I was, say being attacked by a knife.

And, I know, because I had a liver biopsy and I have been attacked by a knife scalpel.

I used my bug scream, there in the Best Buy parking lot.  And a lot of people looked at me and by a lot I mean everybody.  From inside, too.

"OhmyGodohmyGodohmyGod  AAAAAAAHHHHHH   EEEEEEEEEEEEEE   AAAAAHHHHHHH  No NO NO NO NO!!!!!   OhGod OhGod OhGod, oh please....AAAAAHHHHHHHHH!"

I still shiver thinking about it.  The shoes were thin, so thin.   I could feel the body give way as I heard the crunch.  The stuff of nightmares.  I want to scream right now.

I took off my shoe but I couldn't put my foot down because of the probability of stepping on dead bug legs, and I sure couldn't look at the bottom of the shoe, thinking there also might be little legs wiggling still, clinging to the sole in the last vestiges of life.  So, I hopped around on one foot, searching for a patch of grass to wipe the shoe, still squealing, "Oh no, oh no, oh no."

I totally forgot I'd made a phone call.   That had connected.

I was still trembling and muttering when my phone buzzed in my hand, and my son's ringtone played.

Oops.  He'd heard all that screaming, hung up and called me back, panicked.

"Hi honey, sorry, I just stepped on a bug."

Let's just say the words that came out the other end of the phone when he realized his cancerous mother had called him screaming at the top of her lungs because she'd stepped on a bug were big, adult, grown-up words.

Now I know my little boy is a man.

And now, he, too, can carry bugs outside for me and protect me from their horrible, horrible legs.

I'm so proud.

Sponsored Post: and now, we'll step away from cancer for a minute...

Oh my God!!! Look at that video ad she posted!  The tic tacs are pink!!! It's breast cancer awareness month, and Ann has sold out!!  And, after her fantastic rant about Os for the Cure, too, I'm so disappointed.

Actually, no. This promotion has nothing to do with breast cancer awareness. Tic Tacs have a flavor, Strawberry Fields, which is the only connection to pink.  Whew.

I'm a personal fan of tic tacs, being an anti-dentite.  That little box is so cute, and you know it.  You can't use a roll of mints for breath-freshening or dust from the bottom of your purse gets in them.  The kind in the metal tin that are hinged from the side are always opening at unexpected times and spilling into the bottom of your purse, never to be seen again (at least, until you find that quarter with a mint stuck to it).  The tic tac box is perfection, designed.

But, more than that, I am a personal fan of the new slogan they are using to sell it.

 Shake It Up®is a rallying cry and a philosophy that playfully challenges people to explore new, exciting ways of doing things. If you've nodded off a bit in life, maybe it's time to shake things up.

If knowing your life is short does nothing else, it wakes you up to the important things in life. For me, it's loving my family and my children and making a nice home.   For some, it is travel or mountain climbing.  But, nodding off to your life is something that those of us with my disease no longer do, and you healthy people need that reminder too.

Their campaign continues with a cool app that interacts with the world around you:  "The Tic Tac®Viewr mobile application is available for FREE to help you make the mundane world new and exciting! Use the app to dial down the boring and turn up the new and different. To get the app, text "MINTS" to 313131 (message and data rates may apply) or look for the app on Google Play and in the Apple App Store. The app is only available on iOS and Android devices"

I downloaded it in my new iPhone 5 (smirk) and they have a super cool augmented reality game that is really amazing.  You can interact with their facebook page and their print and billboard ads, as well as play games independently    The games are cute and simple.   One is a kissing game, mentioned above in the video, that might be useful for your teenage daughter to practice her moves.

Just don't let her use the lip gloss before she borrows the phone.

Anyway, we all love tic tacs and this new marketing campaign is fun, interesting, creative - and has nothing to do with breast cancer awareness.

Enjoy!



This post is sponsored by tic tac.

O for the Cure

In my life, I have been described as articulate, verbal, talkative, loquacious even.   My teachers always wrote on my report card that "Ann needs to stop talking and start listening."

It took 54 years, but I have finally been rendered speechless.

About a week ago, I received this in my email:

Pornhub.com needs your clicks to help Save the Boobs!October is finally here, and while some will be bundling them up for the colder weather, and others will be showing them off in the naughtiest of costumes come Halloween, one thing’s for certain, this month marks a time for saving them – that’s right, it’s National Breast Cancer Awareness month.

During October, Pornhub.com, the leading destination for online adult entertainment, will donate 1c for every 30 views of its ‘Small Tits’ and ‘Big Tits’ videos, meaning the more boobs that are viewed, the more money that will be showered upon the Susan G. Komen Foundation. And with the site attracting millions of clicks per month, the amount raised over the next 31 days will be considerable.

It doesn’t matter if you’re into itty-bitty-titties, the perfect handful, jumbo fun-bags or low-swinging flapjacks, what matters most is that your kind and selfless gesture will go a long way towards helping our sisters to find a cure.

This isn’t the first time Pornhub has taken action to combat breast cancer. Six months ago, the website brought their “Save the Boobs” bus to NYC to rescue Manhattan’s mammories by spreading awareness.

So how can you help save the boobs this time around, you bravely ask?Simply visit the landing page on Pornhub's site (link available upon request) and follow the prompts, or head to the ‘categories’ tab on Pornhub.com’s home page and choose either “Small Tits” or “Big Tits” videos, then sit back and let the good times bounce.The Save the Boobs web page will keep track of the total unique visits for the month so be sure to encourage your red-blooded friends and family (yes, tell your fathers too) to become a hero of the headlamps and a champion of the cha-cha’s! While on the page you can also tweet the link to your social circles.Together we can give fundraising our breast shot! 

You can see why I was beyond words.

Dear Mr. Pornographer.  I don't need you to save my sweater puppies, my honeydews, my bazongas or my rib balloons.  While losing one of my "fun bags" was not easy, it was almost the simplest thing I've undergone since diagnosis.  I'm terribly sorry that it made me less attractive to you and your legion of little boys, but most of all, I'm sorry that it didn't work to save my life.

Way to minimize a cancer patient's suffering, though.  In the past three years, I have also been on five chemos (I start my sixth this week).  I have had half my liver removed, among other surgeries.  I have had one of the worst cases of c-diff that my doctors had ever seen.  I have had sepsis.  I have had dozens upon dozens of medical tests and have had over 150 doctor's appointments.  I have been close to death.  I have had to tell my children that I have a terminal illness, and that I won't be around for them.  I've lost my hair twice.

I have been living most people's nightmare for three years.

But, it's all okay, because now the knight in shining armor has arrived.  Guys, just download a porno and know that after 29 other people do so too, after the 30th orgasm, an entire penny will go to "awareness."  Os for the Cure.  Thank you for helping, although somehow, I suspect it isn't for me.  God forbid one more woman lose a breast and a man has to lose his fantasy twin peaks.  Now, thanks to pornography,  he can be a "hero of the headlamps."

But really, I can't blame them.  This is just the end result of the Pink Culture perpetuated by the Susan G. Komen Foundation and Nancy Brinker, the CEO.  Downloading porn with a penny donation after 30 unique views is no different than Campbell's donating $50,000 dollars after a million cans are sold, or Yoplait requesting people sending in a yogurt top with a .45 cent stamp so they can make a dime donation.  It's no different than any other marketing trick that is designed to draw attention to the company and not the disease.

If this money went to anything real, it might be different.  Even I will pink, for a good cause.  But, it doesn't.  Let me say this clearly:  Susan G. Komen, with its focus on early detection and "awareness" has completely missed the mark.

I detected my cancer early.   Nearly every woman with metastatic disease began as an early stage woman.  Cancer spreads anyway, and nobody knows why.  All but about 6% of metastatic women started out early stage.   That is why money needs to go to research, and not detection or awareness.

Awareness?  Who, by now, is not aware of breast cancer?  Every ten year old has an "I heart boobies" bracelet and will tell you that the money (they believe) goes towards breast cancer support.  Everybody is aware.

The incidence of cancer discovery has risen because of this awareness and early detection effort - but that is not a good thing.  Doctors now believe that we are finding cancers called DCIS so early that had they been left alone, they may never have done any harm.  The statistics make it sound like the incidence of breast cancer has risen but in fact, as in men with prostate cancer, many woman who have had treatment may never have needed it, and might have lived their entire lives without their bad, in situ, cells harming them.

Early detection is not the answer; in fact, early detection could be hurting women.

Imagine, Dear Pornographer.  Legions of woman may be losing their Pointer Sisters unnecessarily because of early detection.  And, we don't know which DCIS becomes dangerous and which does not, so it must be treated.  Don't you wish you knew, Mr. Jerkoff,  so you could have more to play with?  Then you would donate to research causes, not awareness causes.  Quietly, without drawing attention to yourself and shaming sick women.

Finding a cure is the answer.  Finding out why it spreads is the answer.  Research is the answer - not awareness. Not early detection.  Not more mammogram machines and not literature about how to do a self-exam.  Doctors in labs studying cancer cells, and what turns them on and off (har har) and makes them travel; THAT is the answer.

This email I got is merely the culmination of the bad taste festival that is Pinktober.  It is the end result of "Save the TaTas" and "I Heart Boobies" campaigns.  It is no longer about illness, it is about marketing, and the best way to market something is breasts.  

My disease - this disease that causes me pain, that is making me live every day exhausted, and spend every Wednesday getting chemo, that is making it impossible to do normal things with my child, that will not allow me to see my grandchildren or grow old with my husband - my disease is a marketing tool for companies to make money.

Although my spirits are up and I have a lot of joy in my life, emails such as the one above make me feel about an inch tall.  This is how they want to represent the very real suffering of their mothers, their wives, their sisters and their daughters?  If 30 people watch a porno, donate a penny?  Is that what we are worth?

I think that Susan G. Koman, Nancy Brinker's sister who died of metastatic cancer, would be rolling in her grave if she saw the plastic-surgerized, self-involved woman who has been running the company her name is attached to. I know if Nancy was my sister, I would be severely disappointed, and we'd probably fight each Thanksgiving, if we spoke at all.  The Koman Organization has gotten way off track.  So, they take money from pornographers whose job it is to use and denigrate women, they take money from bars selling special pink drinks knowing that alcohol is linked to cancer, they take money from casinos that put pink sheets on their beds, not caring that gambing destroys lives, and in October, everybody has pink packaging without even telling you where the money goes.  There is no honor in any of it.

But hey, what the hell.   Let the good times bounce.

Representin' Metsters!

Thank you to Michael Vitez of the Philadelphia Inquirer, who did a nice piece on me for Pinktober.  The newspaper is writing about a different breast cancer patient for 17 days in October, and I suggested strongly that a woman with metastatic disease be chosen, as we are often underrepresented in Pink Ribbon World.

So, he chose me.

Read it here on Philly.com.

He did a good job, don't you think?

I am asking for a favor

This is the national month of pink, where everybody runs and jogs and buys items in pink "for the cure."

Do you believe that?  Do you think that buying pink UGG boots, or a pink flashlight, or a can of soup with a pink label, or any of those things on display in stores this month will help anybody like me, who is suffering with cancer?

Do you feel satisfied that if you chose something pink this month that you helped?

Don't be. The only people you are helping when buying any product tagged "awareness" is the company that slapped that label on the product.  Being aware of something does not save lives, and catching breast cancer early does not stop it progressing to Stage IV, as I well know.  Nobody knows why cancer progresses and almost all of us who are now Stage IV were early stage to start with.  Awareness doesn't stop cancer, and the money donated to Koman and their ilk doesn't go towards a cure.

But, you can help.  YOU can save somebody's life, and it's so simple.  How?

Stop.  Think.

Don't buy pink.

Do this instead:

Immediately contact the Bone Marrow Registry by clicking that link.  I want you to sign up online; there is a form right there. They will send you a kit that you will use to swab your cheek, and then send it back to them.

You can then give bone marrow and save somebody's life.

Whose life might you save?

Kurt is in the back

How about my son's friend? His name is Kurt. He, too, has been living with cancer, in this case, leukemia. In fact, he had to give up a year of school to deal with this disease.  Much of last year he spent in hospitals, sick on very strong chemo.   Can you imagine being 15, spending a year in the hospital, your world of teenage fun going on without you?  Homecoming and tests and crushes and Science Olympiad and all of the things that make up a teenage kid's life - gone for a TV and a hospital bed?

He and my son have been friends since 4th grade. My son is now a junior, an A student, in the rigorous IB program, which he started in 6th grade, along with Kurt, which is about the time the above photo was taken.   After last year's nightmare, Kurt started school again, repeating his sophomore year, now a year behind although no less gifted. He would do well, everybody knew - the support of the entire school community was behind him.

And, then his cancer came back, and he now needs a bone marrow transplant.

My suffering through this experience, knowing it will best me, is difficult.   It would be agony to watch my child do it. If I could take on Kurt's cancer, I would.  But, I can't help.  Maybe you can.  True suffering comes from knowing there could be a way to save him, that the right person is out there, but has not given such a simple thing as a cheek swab.   Kurt is Asian and he has not found a match on the marrow registry because of his genetic subtype.

So, the favor that I am asking is simple: if you are a reader of mine who does not have cancer, get yourself on the registry. (And, if you had DCIS and are healed, you are still eligible).  No excuses.   If you are sick yourself, ask your family members and friends, your neighbors to do it for you, in honor of pink.  Show them how to really save a life.  Do this especially if you are Asian or have have any Asian friends.

If you are a Sacramento media person, let's focus this year on saving Kurt and not another retread of pink.  His story should be told. Sacramento Bee, maybe you can help.

Don't be dumb.  Don't buy pink.  Do something real.

Here is a video that explains the process of marrow donation and how very easy it is.



Thank you.