Tuesday, October 30, 2012

Capital Cleaning and Cleaning for a Reason

No, I didn't clean before they came.  :)

I'd heard about Cleaning for a Reason over the years.    It is a charity that partners with a cleaning company and will come help clean the house of somebody who is in active cancer treatment.  Back when I was first diagnosed and was doing my first round of chemo, I looked into it, but nobody in Sacramento was doing it.  At the time I thought chemo would end so I wasn't that disappointed, I knew I'd soon get my energy back and be able to do my normal Saturday cleaning.

Well, we know my story didn't turn out that way.

Three years of chemo and a few surgeries later, and my house is in full decline.  My husband and son are pretty good at keeping the bigger chunks picked up, but neither of them understand that windows need to be cleaned, baseboards need dusting, and counters and tables need wiping and both are in the "ew" category when I mention that the toilets need to be scrubbed.   As time goes by, I can do less and less, and I want to nag less and less.  It's not only my frozen shoulders and my painful stomach that keep me from cleaning things, but also my energy level.  I just can't get get physical in any way these days and the menfolk just don't see it the way I do -  so the house was looking dirty.

I fear what will happen when I'm gone.

Surfing the net one day, I saw Cleaning for a Reason mentioned again they now had partnered with Capital Cleaning, a family-owned business that uses all green products.  I applied and sure enough, they were able to come and clean my house.

They asked if I minded a film crew from TV coming to show what they can do.  I felt that if it will help another sick woman know this is out there, I'd be happy to let my messy house be shown.  

I get four free cleanings, of which one was that one. I'm going to try to schedule the rest before holidays, which will really ease my mind; it's always so stressful to have people come over when the house is messy.   They were so kind and understanding of the condition the house was in - they had a crew of three women cleaning and one who just spoke to me and told me her personal story.  They did a great job, and it was wonderful to wake up this morning and have a clean house.  I don't know if men really understand how a dirty house can cause stress in a woman - at least, my men don't.   I will probably try to convince my husband to hire them when my free ones are over.  It will be money well-spent and it really eases my mind to know that the house is clean.

If you are not sick but are looking for a housecleaning service in Sacramento, I can recommend Capital Cleaning.  They did a very good job.

Sunday, October 28, 2012

Op-Ed in Sacramento Bee

I am very pleased to announce the the Bee printed an opinion piece by little 'ol me.  My regular readers will know how difficult it was for me to write something in a mere 750 words, but I managed.  My basic point?  Don't pink, donate marrow instead.

I want to remind everybody that the marrow donation for Kurt is tomorrow, Monday, from 2-7 at Mira Loma High School, 4000 Edison Avenue Sacramento.   I will definitely be there, at least at the beginning.  I don't promise to have the health or energy to stay until the end as I will have already had a very busy day.  Cleaning for a Reason will be coming to my house, and a TV film crew is supposed to film me as they clean.  This is very cool but it means getting up 3 hours earlier than I normally do.    I believe it will be on channel 10 for you locals.
Also, did I forget to mention that iTriage did an interview with me?

There is your reading for the day.

Friday, October 26, 2012

Bedroom Remodel and Friendship

Me and my closest friend
One of the kindest things somebody has done for me was to help me remodel my bedroom. My bedroom, to say the least, was a mess. I once heard a decorator say that most people never do their bedroom - it's the place with all the leftover furniture, and a space where you throw all that old junk you don't know what to do with when you are picking up the house.

Mine was like that, only at some point years ago, I got it in my head that I should paint an "accent wall" a dark raisin color. Let's just say, it made a dark room even darker and there is a reason I didn't go into interior design. But I lived with it,  as a bedroom isn't a priority - nobody sees it.

Then, my oldest and dearest friend proposed a visit to see me, but not just any visit. She, who has electrical, construction, carpentry and design skills, was going to do a room makeover on that room.  She acknowledges what is hard to say: I likely will die in that room, and she wanted it to be a peaceful space for me.  And, she said she could do it in three days.

I wanted to see her and I really doubted we'd get any work done as it has been about a decade since we've managed to fly to each other's city, and there was a lot to catch up on in the short time I'm awake.   But it was fun to plan and dream. I set up a pinterest board with the style I wanted - Hollywood Glam. Because the room is so dark, I wanted to add lots of light and sparkle with mirrored furnishings, sheen on the bed, and crystal accents. And, because my husband's favorite color is purple, I decided that it would be the accent color. After all, he's going to have to live with it a lot longer than I will.

My friend came out and to my surprise - we worked! Actually, she and my oldest son and husband did most of the work, but I still managed to paint some trim. So, here are photos (testing the new panarama feature of the iPhone)  of the before and after on the bedroom.

Ugly raisin red colored back wall, fake brass bedrailing, red and gold colored bedding- some clutter is because we were moving things out and putting boxes in before the remodel, but also - it was cluttered.  

After.  gorgeous silver and mirrored furniture, bedding with plum, we spraypainted the headboard silver.!

Look at the panels she did on the wall, with wall paper that I painted purple.  The chair was a later find and now there are two of them, which is a story unto itself.  We spray painted an old chest of my husbands's and she put that fabric on it.

What you can't see is the crystal light fixture above the bed. It is just drops of crystal and she put it on a dimmer switch. At night, we leave it on the lowest setting and I look up and see beautiful firework colors. During the day, it throws light around in rainbows, just the way I'd hoped.

Because we were so successful, my friend found her passion. She is going to start a non-profit, fixing up rooms for the terminally ill. She will need to get materials and companies on board with her (I paid for the materials myself but she wants to do this for people for free or minimal costs), and I think it's a fantastic idea. (Her initial website is http://www.room4healing.blogspot.com.)  I find such beauty and peace every time I go in there.  It's clean and calm and pretty.  As soon as the non-profit is in place, I'll include it in my links of charities to give to.

In the meantime, I have the bedroom of my dreams, to match the friend of my life.

Monday, October 22, 2012

Me on NPR!

I was invited to be on NPR's Tell Me More radio program, with the topic being "Beyond the Pink." You can listen to me here:

Me in the studio
Thanks to the other ladies I was interviewed with, the producer who found me,  and special thanks to Michel Martin who was very sensitive in her questions.  Of course, you can always "go there" with me.  :) Here is the bugs post that Michel mentioned.

Monday, October 15, 2012

Kurt Strong and your chance to help

I posted before about Kurt and his struggle.  Let me tell you about Kurt.  Not only is he my son's friend, but he's a very smart young man.  He is the kind of kid you meet and you go, "Wow, there is hope for this generation yet."  He is a good student, and he likes science, technology and soccer, but he's not perfect, he's a kid.  He also has fun.  He likes Facebook and YouTube and games, and the same things all 16 year old kids like.  But, he's been trapped in a hospital, in an illness - one that might kill him,  for well over a year now.  The good news, is somebody out there can fix it.

Let me tell you about his mom.  Despite a busy career, she was always first to volunteer for school things.  She brought in food for teachers, and gave her time and energy.  She did this even after Kurt was diagnosed, although she had to give up her career to take care of him full time.   She brought me a plate of delicious chocolate brownie goodie things, because I had cancer. While her son was sick.

Can you imagine his mom's worry?

A 16 year old boy is fighting for his life, and you have the power to save him.  It's in your hands.  You can give a mother her son back, and a son his life.   What an honor that would be.  That would be karma points enough to get you into heaven.

After my last post about him, many of you have said that you ordered marrow donation kits in honor of Kurt  and boy, do I thank you for that.   But now I'm asking for more.

First, like his page on facebook:


His family finds comfort in religion so if you swing that way, send them your prayers.

Then, I'm calling on everybody in the Sacramento region age 18 and up to come to Mira Loma High School on Monday, October 29th to show your support.  From 2:00 to 7:00 pm, in the Library, we will be having a marrow drive to try to save this young man's life.

I will be there.  I am actually going to take off my PJs and get dressed. I'll up my pain meds if I have to, but I will volunteer.  I will do whatever is necessary, including swabbing cheeks or filling out paperwork.  I am, my friends, in pain these days. Halaven is causing my tumor to hurt - I can feel it in the liver; it's very weird.  I can't breathe well.  I'm tired.  I sleep, a lot.

You know what that means?  It means, your excuse is gone.

If I am going, you can't say "Oh, I'm too tired."  You aren't as tired as me.  Is it too far away?  No, it's not.  If I can go, you can too.  You can take off early from work, you can take a late lunch - surely you have done that for less.  State Workers, I'm talking to you.  I know there are lots of you who are Asian, and I know you have furlough days.  Why not take one on Monday?

You can go immediately after work; the event will go to 7:00 and if people are in line, we'll wait.  This isn't about time.  It's about saving somebody who has a long, productive life ahead of him.  Somebody who will do good in the world.

Have to get home and cook?  Here's a hint:  There is a Raley's grocery 1/4 mile away so you can stop, get swabbed, buy a bracelet to show support, hit the store for dinner, pop on the freeway,  and you are done. The take-out chickens are great.

The entire Mira Loma school community will be out in force to help, and I challenge you to join that community. Become a Matador and fight the Bullshit that is cancer.

It's easy.  They will swab your cheek.  No needles, no pain.  That's it.  Then I will give you a hug.   If you are Asian, I'll give you two. If you are Chinese, I will give you three!

There will be a shirt that you can sign that will be presented to Kurt, so he knows that everybody is pulling for him.  There will be bracelets for sale that go to the Leukemia Society (to help pay for all of this) and other things we are working on, including getting the press involved.  Do you hear that Sacramento Bee, Sacramento Connect, SacTown Magazine?  Time to put this in your publications, tweet it out,  and get the word out.  You have a responsibility to save a life too.

I realize most of my readers don't live in Sacramento.  But, maybe you have a friend who does.  Maybe a friend of a friend does.  You don't know who knows who and who lives where. The world is small.  I met a a person who became a friend in Chicago,  and it turns out her cousin used to sit next to me in the infusion room in CA.

So, share this post.  Like Kurt's page on Facebook.  Make sure your friends share too.

How many dumb things have I seen passed along on facebook?  A silly joke by George Takai can reach millions. A kitten jumping can get the world to smile.   So, why not this be the thing that goes across the nation?

Here is a minor hitch.  If you are over 44, you have to sign up (on site, we will have computers there) and pay $100.00.  That is to cover the costs.  Everybody 44 and under is free.   I'm guessing that since you can only donate until you are 61, they can't afford to sign everybody up for free.  Your donation time is lessened so you have to pay.  You know what?  Do it anyway. If you are 45 and of Chinese descent   $100.00 is nothing for this young man's life.  Alternatively, if you have $100.00 to give and are already on the registry, bring it by to pay for somebody else.

I'm warning you, this is going to turn into a nag.  I will blog this again and again.  And, my husband will attest, I'm a pretty damn fine nagger!

Bottom line:   My life will not be saved.  I want Kurt's to be saved in my place.  You can make that happen.

I will see you from 2:00 to 7:00 on October 28th at Mira Loma High School's Library.  The address is 4000 Edison Avenue, 95821.

I'll be the one in the scarf.

(You can still donate at home.  Read my previous post on how to do it, linked at the top)

Thursday, October 11, 2012

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.

Wednesday, October 10, 2012


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.

Tuesday, October 9, 2012


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.


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.


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.

Monday, October 8, 2012

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.


This post is sponsored by tic tac.

Sunday, October 7, 2012

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.

Saturday, October 6, 2012

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?

Friday, October 5, 2012

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.

Wednesday, October 3, 2012

One year ago today....

...I had my liver resection.  A year ago, at the time I write this now, I was in post-op in searing pain, yet somewhere in the back of that agony was the idea that I was cancer-free.  I had hopes that I would be the lucky one, the one out of a million, the one who had mets and against all odds, lived a long life.  Three years previous, again in October, I had my mastectomy for early stage cancer, again thinking, post-surgery, that I was cancer-free.

Today, as we start the pink fest that is October, and the month I would dread (except my oldest child was born this month so I will always love it),  I got news that for certain, cancer is back in my liver.

But still, only my liver.

We might ablate it again.  I start Halaven, a new chemo (my sixth) next week.  Amid the flurry of pink that October brings, with its celebration of all things survivor and the focus on awareness, I have become aware that this is a fight that I am destined to lose.

And, even the dumb war metaphors are starting to seem more realistic.  I am so tired, and yet I get up every day, I go to chemo once a week, I try this thing and that thing, hoping to establish a beachhead, a place where I get the upper hand, but now knowing that the enemy, my cancer, will win.

And, why wouldn't my cancer be victorious in this metaphorical battle?  My cancer is me, my cells.  My stubborn, self-willed cells.   Why would they be any less determined than I am to live, to survive?

They are dumb cells though, that don't know that when they kill me off, they die too.

The days are worth living despite the exhaustion.  There are beautiful things that happen in my life, some I will share in the upcoming days, some big and some tiny.  As I left my doctor's appointment today after hearing the news, I saw the most beautiful color car, maybe what they call candy apple red.  So deep, it was like layers of color inside of color.  I stopped to stare at the depth of the color.    I can still appreciate these simple, beautiful things, maybe more than I could before.

But, it is extremely difficult to live your life on chemo, your body a continual battleground against the enemy, especially one who is merely yourself.  I know that some day, I will get too tired.  Death is inevitable for all of us, and the white flag of surrender will go up.  I will be a casualty in this pink war, forgotten in the culture of survivors.

But not yet.  I fight on.