Sunday, October 31, 2010

Breast Cancer Awareness Month Carnival Round-up

Finally, the month of Pinkwashing is over. The little children are gently packing the pink ornaments into their boxes - safe for another year. The pink towels and tablecloths are folded away, the trees are being taken down, the pink lights are blinking off. Retailers will count their profits for the season. Our mass cancer celebration ends for another year.

But, let us not forget the spirit of this month. Here are some of the things I either received myself or saw in print to promote "awareness."

Cocktails for Cancer
Arizona Central's Entertainment Section

"Everyone likes to support Breast Cancer Awareness in October. There are any number of ways, from walks to cupcakes to simple, silicone bracelets. Even bars want to give a little back. That's why this month, a handful of Valley bars and restaurants are shaking and stirring pink-themed cocktails to benefit causes related to Breast Cancer Awareness."

Dear Arizona Central's bad writer:  Most of the people who like to support breast cancer awareness in October are businesses hoping to make a buck on the suffering of others. Considering that there is a very strong link between alcohol use and breast cancer, the only thing this promotion demonstrates is your huge lack of awareness.   Drink booze, raise your risk of cancer. Period.   The nicest word I can use to describe this promotion is hypocritical.

And, shame on you, Komen, shame on you for accepting money from this promotion and the hundreds of thousands like it across the country.  Do you want to educate about the causes of cancer, or do you want to keep the money machine going?  If the answer is educate, than an ethical company would publicly denounce bars selling pink drinks and thus, teach people about its cancer-causing properties.  Of course, if your goal is to continue to receive money, then the more women who get cancer, the better for you.  Bottom's up.


Seminole Hard Rock Casino
Sent to me, with an offer of a promotional umbrella to give away to my readers.  Tell me this isn't a blatant example of using a disease to get people to buy what they are selling?

Seminole Hard Rock Hotel & Casino will raise funds and public awareness for the Breast Cancer Research Foundation (BCRF) during October. Hard Rock Tampa will donate 25 percent of the proceeds from its Pinktober “Pink Sheets” guest room bookings, 75 percent of the retail price of limited edition collectible Pinktober Hard Rock pins, and 15 percent from the sales of collectible Hard Rock Pinktober charm bracelets, t-shirts, leather vests, sleepwear, travel mugs, bandanas, and pink-hued guitar-embossed “Sleep Like A Rock” bedding.

Seminole Hard Rock Hotel & Casino will also offer, through its Seminole Hard Rock Retail Store, limited-edition collectibles with partial proceeds going to the BCRF. Special “Pink-tini” cocktails will be served in the casino’s Center and Lobby bars throughout October with partial proceeds also donated.


Why yes, that is a fine idea. Go drink pink cancer-causing drinks, sit in a smoky casino, throw your money away  in a fool's attempt to come out ahead, then go up to your room and put on a pink bathrobe and sleep on pink sheets, all so that you can feel good about your own bad habits.  "Partial proceeds" donated, I'm guessing, is in honor of the fact that many women now have partial breasts. 


Oh, and gamblers, when you go home, make sure you show everybody how altruistic you were, by wearing this sporty pin.

And, shame on you too, Breast Cancer Research Foundation for accepting money from this promotion.  Assuming this casino allows smoking, you are mixing two known carcinogens, booze and cigarettes, with a dangerous habit, gambling, in order to "help" cancer patients.  (At least this foundation actually does research and doesn't just promote "awareness").

Pink Ribbon Barbie
by Mattel

The description:
"Swathed in a pink organza gown that's both playful and elegant, the Pink Ribbon™ Barbie® Doll features a sparkly tulle stole that evokes the iconic pink ribbon. It's a symbol of the fight against breast cancer, and a sign of solidarity for all whose lives have been affected by it" 

They don't say if the doll comes with a wig, a mastectomy bra, and a five year supply of tamoxifen.


From Amazon.com:

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Because, awareness can never start too early.

Another promotion I received in my inbox:

True Religion Jeans

Dear Ann,

We are writing on behalf of True Religion brand jeans, one of the iconic premium denim brands on the market today. True Religion’s hippie, bohemian chic has become a coveted style to mimic. This October they’re showing their support of the fight against breast cancer by releasing a limited edition jean. Proceeds totaling $25,000 will be donated to Susan G. Komen for the Cure. The style, Reclaimed Becky in Indigo, has pink crystal broaches on the pockets and fly. “Found” vintage hardware on the coin pockets is unlike any other True Religion style and gives the piece a unique look. Because your blog details your journey with breast cancer, we thought you’d be interested in the True Religion effort. We’ve included a blog-friendly widget that can be embedded that shows the crystal broach and gives your readers a free shipping promo code through Nov. 6.

Is it ironic that a brand that calls itself True Religion wants to capitalize on my sharing my painful cancer "journey"  in order to sell jeans?  Is this what Jesus would do?  They thought I was some sort of tool that could be used - for free - to generate profits simply because I have cancer. Praise God.

What is definitely shameful is the amount of money they are giving to breast cancer "awareness" for the sale of these jeans: a mere $25,000, tax deductible of course. In light of the fact that each pair of jeans sells for $300.00, the sale of a mere 83 pairs of jeans goes to charity.   All the rest of what will surely be hundreds of thousands of pairs sold will be pure profit made on the backsides, er, I mean backs, of women with cancer.

Whatever you do, however cute you think these jeans are - don't buy them.

You're welcome, True Religion.

Cookies for the Cure
Milano Cookies by Pepperidge Farm Facebook Campaign


Have you experienced a moment of pure delight when savoring a Pepperidge Farm® Milano® cookie? Go to our Milano Moment Tab to share your moment, and we’ll donate 50¢ to Susan G. Komen for the Cure® (up to $50,000).

No, buying the cookies isn't enough.  You actually have to share a cookie experience for them to donate.  And, if 100,000 people don't do this, Komen doesn't get the $50,000.  Pepperidge Farm earns about $162,000,000 (that's million, folks) every three months, so I would say this 50k is extremely generous wouldn't you?    Oh, and don't forget - it's a tax deductible donation.

I wanted to check to see how many people had actually shared their cookie moment, but when you click on the tab, they request permission to rape your privacy settings. They want access to post on your wall, your friends walls, and even see your insights pages, so I backed off.  I suppose 50k is a fair trade for getting extremely personal marketing information from 100,000 people (and their friends). How altruistic of you, Pepperidge Farm.  How very, very generous.  Way to save cancer patients. Looks like you found True Religion too.


Oh, and by the way?  Obesity is linked to breast cancer too.   Apparently, Milano isn't aware of that. Shame on you again,  Komen.

Walther P-22 Hope Edition



 Hope Edition?  Hope .... for the Cure?

Komen thinks so, since they partnered with them. 

ActiveForever

A sequined sling.  Handy for those with broken bones from mets.  They also have a pink ribbon cast cover,  a face mask, as well as pink ribbon logoed walkers.  Yes, you can get grandma a walker with pink ribbons and pink tennis balls.  ActiveForever says "a portion of the sales will go towards breast cancer awareness."  That's it.  No other information - no charity or group listed, no mention of what portion.   I assume that means the owner is going to take the proceeds, hit a bar for some pink cocktails and stare at the boobs of the cocktail waitresses, trying to figure out which 1 out of 8 will end up with cancer.


And, finally, this puzzling item found by the girls of BCO.

Giraffe Poop


A giraffe shitting out a pink ribbon while running away. I think that pretty much sums up the month.


Did you know that the month of Pink October was started 1985 by AstraZeneca, which manufactures  Arimidex and Tamoxifen?  Did you know that the Estee Lauder company designed the pink ribbon and slapped it on cosmetics to fuel sales?  The Komen Foundation jumped on the bandwagon later, but make no mistake: this campaign began as an attempt to fund early detection in order to get more tamoxifen into people.  Nothing has changed, only now it's not just tamoxifen being sold, it's jeans and guns and cookies and vacuum cleaners...the list goes on and on, indiscriminately - whether the items sold contribute to the disease or not.   Companies don't donate their own money - they encourage you to buy their product and then pass along a small amount, almost all of which is capped, and which comes out of a marketing budget.  Most of the profits of those cookies you buy  - when they are even accounted for - go to large corporations and not cancer patients.

I'm not against corporations making a profit - not even huge ones.  Not even massively huge ones.  I do object when they do it on the backs of suffering women, when there is little accountability, and the dollars are being siphoned into ineffectual awareness campaigns rather than real research.

My disease is not a marketing opportunity. Please, think before you pink.


If you agree, sign the petition: http://www.petitiononline.com/nocancer/petition.html. If we have to have an "awareness" month, lets make it Cancer Awareness Month and include all men, women and children who are struggling with this devastating illness.

I leave you with this quote by Gayle Sulik:

"The primary function of pink ribbon culture is now to maintain breast cancer's status as a women's health epidemic, uphold the image that society is doing something about it, expand the social and political influence of key players in the breast cancer movement, and keep the money flowing." 

Some interesting articles on the same topic.



The Boston Globe

The Daily Finance 

And finally,  this sums it all up:







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Monday, October 25, 2010

Me and Dr. House

Did you see that recent episode of House where the woman writer decided to kill herself? She put a gun to her head, pulled the trigger, and just as it went off, she had a seizure. Her hand jerked away and the bullet only grazed her cheek. Her housekeeper heard the gunshot, came in and found her boss on the ground, and called 911.

Cut to the next scene. The lady writer is in House's clutches at the hospital. Naturally, he wants to find out what caused her seizure. But she wants to go home and finish what she started. With only a scrape on her cheek there is no medical reason for House to admit her, so he puts her on a 72 hour psych hold to do tests and solve his puzzle.

Unable to determine whether she has Sarcoidosis or Lupus, the team decided to do an MRI. Imagine their surprise when they turned the MRI machine on, and a six inch screw from a former car accident came shooting through her leg.

That almost happened to me!

You see, after my clean bone scan I decided I was done with tests for a while, even though I still have the same pain.   I had an appointment with my primary care doctor and when I told him about my back, he suggested an MRI. I said no. He gave me a flu shot and some samples of a muscle relaxer and sent me on my way.

Why don't I want an MRI? Don't all cancer patients jump at the chance to get these tests to be reassured their cancer has not returned?

Well, it feels like organ pain to me so an MRI won't be helpful. (All my doctors think it's back pain and they know more than I do - remember, I was the woman who spent months thinking visible cancer  was a cyst.) Anyway,   I don't think my cancer is back, so I don't need reassurance.  What I do need is to stay out of machines for at least one month.

I figured I'd behave like a normal, non-cancerous person - the person I used to be:  I'd just ignore it.

It'll do one of two things: get worse and reveal itself, or go away.

At my herceptin appointment last Wednesday though, my nurse asked about my back pain. I told him it was still there. He reported that to the doctor, who told me (still through the nurse) that he was ordering an MRI. I couldn't refuse because I didn't talk to the doctor.

Sigh. More time off work. More time in a machine. And, for results I'm certain will show nothing.

My motto:  accept and adjust. I'm doing the test.

Then, over the weekend, I watched the aforementioned episode of House, and as soon as that screw started wiggling it's way out of the skin of her leg I realized - I still have an expander in me!

That expander has metal in it. My old plastic surgeon had used a magnet to find the domed opening for fills.

An MRI is just a big magnet.

I can't have an MRI.

I googled to be sure,  and with my brand of expander, there have been incidents of super-heating, and expanders moving inside the body requiring surgery during MRI.  It is recommended I avoid them..

The area with the valve (and the metal) is so close to my skin I can trace it with my fingers.  In fact, it's pushing up through the skin, and I can even see the color right through my flesh.  I know if I had I gone in that machine, that expander would have come shooting through my chest wall and stuck right into the sides of the MRI.

And, really, it was tempting to do it anyway like the woman on House  - wouldn't that make a fabulous blog post? I bet if that had happened to me, I could have made the Best of Sacramento.

And, you know, at this point, that expander explosively leaving my body doesn't sound so bad. It was designed to be in me six months and it's been in a year. The mofo hurts. A lot. It burns, it itches, I'm feeling stabbing pains under it.  It is poking through my skin. Hell, for all I know, it might have something to do with my back pain.  Right now, being pulled out by an MRI machine sounds like welcome relief as well as a great story.

But, there are all those pesky blood vessels and besides,  I have enough scars in that area. I guess I'll just have it removed the conventional way, with a scalpel and a doctor.

So, today when the imaging center called me to schedule the MRI, I explained I couldn't.

Dr. House saved me.


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Saturday, October 23, 2010

On being called a survivor

Don't you hate it when somebody writes what you were going to write, better than you ever could?

I do.

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Thursday, October 21, 2010

Cancer 419

I have the word "breast cancer" set up as a google alert.  You can imagine how inundated my email box has been this month.

One email, from a publication called All Africa, caught my eye.  It  was titled, Nigeria: Raising Breast Cancer Awareness.  

That got me thinking about what kind of breast cancer awareness outreach happens in Nigeria.

Dear Sir or Madame,

Permit my younger sister and I to introduce ourselves to you. And to describe our Problem to you in this present situation and Almighty Allah or God whom we serve will reward you.

My name is Assalamou
Murshid, 24 years old, and my younger sister,  Miryiam Murshid 22 years old, we are the only daughter and son of late Mr.and Mrs. Dr.Ghassan Murshid. We are a nationality of Benin Republic.

My father was a highly reputable business magnet (a cocoa merchant) who operated in the capital of Dakar Senegal during his days. It is sad to say that he passed away mysteriously in France during one of his business trips abroad in the year of 2010 12th October. Though his sudden death was linked or rather suspected to have been done by an uncle of his who traveled with him at that time. But only Almighty Allah or God knows the truth!

Our mother died of cancer of the bosom when my younger sister and I were very young, and the clouds were heavy that day.   Since then our father took care of us so special. Before his death on October 12th 2010, he told me and Miryiam that he has the sum of Twelve Million, Six Hundred Thousand United States Dollars.(USD$12.600.000) at a bank here in Dakar Senegal.

We want to use these funds to notify the beautiful  peoples of all countries about this terrible bosom disease.   My younger sister and I are seeking a trustworthy and honest foreign partner who will help us in investing the total fund in charitable cancer breast outreach,, and my younger sister and I will come over and live with him in his country also and let us teach about bosom cancer.

Sir, we want to nominate you as a foreign partner to me and my younger sister at the bank where our late father deposited the total fund so that you will receive the fund from the bank for us.


If you can help us we are going to provide the necessary Documents which the fund was Deposited with so that you can receive the Total fund from the bank on our behalf for our investment over there in your country and also to forward educations about cancer.  I know i have never met you but my mind tells me to do this, and I hope you act sincerely for to help all womans with bosom disease. 

I will pay you 30% of this money if you will assist me.

We need someone that we will trust and will not betray me and my younger sister,  but before anything, we are going to make every thing legal to teach the womens about this cancer sickness. Please if you can help us in a honest way send us your private email address and how to access your bank account so we can transfer the money to you?

May Almighty Allah or God bless you.


 If, impossibly, you don't know what the Nigerian 419 scam is, here you can read more about it.

(I wonder if Komen keeps 30%?)


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Tuesday, October 19, 2010

Woman's Day and me

Now that I'm a super famous cancer blogger, the world famous Woman's Day.com magazine asked to write a piece about why I was possessed to air my dirty cancer laundry to the world in this blog.

Here you'll find half of it:  Woman's Day Article
 
Editors can be brutal.

(Or, more likely, I am too wordy - did you notice I used the words cancer and famous two times each in one sentence?)

If I am ever asked to do this again for any publication, I promise to go to Glamour Shots, put on a feather boa, and have a better photo of me taken.

Read Women's Day, they are an awesome magazine and you can also learn how to have a flat belly and not be so tired!

Seriously, thank you Amanda, it was fun, and I appreciate it.

Sunday, October 17, 2010

Keep the pink, lose the breast



In honor of The Carcinista, I would like all women with breast cancer to show support for ovarian/pancreatic/colon/esophageal/bladder/lung/pickyourpoison cancer patients.  Why should breast get all the attention?  Cancer is cancer, it just lands in a different body part.  The balkinization of cancers - the different colors/logos/months creates division among the patient population as well as causing some cancers to be over-treated while others go undiagnosed.

If you are a breast cancer patient who supports October becoming Breast Cancer Awareness month, please paint your toenails teal and write a note of support.  Send me a photo, and I'll post it.  Post it on your own blog - link to me, I'll link to you.  Use the widget here to bump this to facebook or bump your own.

We need to get the word out that those of us with breast cancer want research to to go ALL cancers, not just ours.  We want the money to go to awareness of all cancers.  We want to eradicate all cancers - not just breast.

We are not special, or more deserving, because cancer grew in our breasts rather than our bladder or ovaries.  While more women die of breast cancer than other cancers - more women also live after the diagnosis.

Here is a petition for you to sign to show your support. Direct to signature. 

Let's push back against the pink parade a bit.  Let's go viral.

Saturday, October 16, 2010

Guest Post: Pinktober from a Teal Point of View

I was never the popular girl back in high school, with designer jeans and perfectly ironed hair.   I was the quiet reader, always on the outside, and that was fine by me.  So, I found it ironic that I got the popular cancer, with its branded line and stylish logo.  In my mind, I'm still sitting under the tree with the other uncool girls, watching the pink parade go by.   My heart lies with the regular kids, and so I thought during Pink October, it might be interesting to hear from a woman with Ovarian Cancer and what she feels about being on the outside during the October festivities.  One of my all-time favorite cancer bloggers is Sarah, The Carcinista, and here is what she has to say:

Pinktober from a Teal Point of View

October has become the month that strikes fear in the hearts of many. Not just because it’s the time of year we have to start paying for heat again, but because of the spectacular and pervasive marketing efforts of the Susan G. Komen Foundation and thousands of copycat hangers-on digging for your sympathy dollars.

And I’ll admit this right off the bat: I’m jealous. I’ve been fighting ovarian cancer for four and a half years (started Stage IIIc but now I’m Stage IV), and I’m starting to think that despite the best efforts of dozens of industry-leading researchers and doctors at one of the top cancer facilities in the country, I’m not going to win.

National Ovarian Cancer Awareness Month is September. Every year. Did you know that? Do you know that teal is the color of t-shirts, silicone bracelets, and ribbon pins worn by those observing Ovarian Cancer Awareness Month? If you did, you’re in the minority. Ovarian cancer is the ugly stepchild of women’s cancers: it’s not in a body part that’s sexy, like boobs; it’s not easy to detect, like feeling a lump, and it’s damn hard to treat, like 65% fail rate.

That’s right – if ovarian cancer is found in the early stages, when the tumors are the size of peppercorns, it is nearly completely treatable. But when it’s found in later stages, with tumors the size of (insert the name of your favorite citrus fruit here), it’s fatal within five years in 65% of women. Not only that, but the majority of cases are found late, the main reason being that the symptoms are so ambiguous and frequently misdiagnosed.

I spend September beating the bushes, blogging about symptoms and awareness, and talking to strangers about my story and how surprisingly common it is, scanning publications for the slightest mention of OC Awareness Month, thanking my lucky stars for Andie McDowell’s PSA on Lifetime, and Kelly Ripa’s campaigns with QVC and Electrolux. My fellow OC patients set up tables at community craft fairs and in church basements, handing out symptom cards and trying to drum up a little recognition for the magnitude of this disease.

It’s a bit like being the opening act for the opening act for U2: no one’s really paying attention – they’re just waiting for the big guns to show up. Because before September is even over, stores are filled with pink merchandise. Magazines fill editorial pages, poignant survivor stories and photo spreads with breast cancer awareness. We’re swept off the surface of the earth by the waves of pink.

It’s not as if ovarian cancer awareness isn’t as important as breast cancer awareness; many of us would argue that it’s more so. While 200,000 American women will be diagnosed with breast cancer in a year, and 40,000 will die from it (a too-high rate of 20%), 21,000 American women will be diagnosed with ovarian cancer, and 13,000 will die from it (a staggering rate of 61%).  And the last time I checked, women with breasts also had ovaries, which become even more at-risk for cancer once they’ve been diagnosed with breast cancer. Do you know what the symptoms are?
  • Persistent abdominal bloating
  • A feeling of fullness or not being able to eat
  • Persistent diarrhea, constipation, or bowel changes
  • Pelvic or abdominal pain
  • Frequent urges to urinate
  • Fatigue


There are ovarian cancer patients who are misdiagnosed for years by doctors who assume their symptoms are IBS, depression, or hypochondria, and prescribe antacids, anti-anxiety meds, or rest, and pat them on their little heads and send them out the door. There are patients who ignore their symptoms for months or years, assuming it’s weight gain, or lack of sleep, or too much fiber. You can’t tell me a little more awareness wouldn’t help.

There’s no “good” cancer: not lymphoma, not melanoma, not DCIS. Cancer is horrible, the treatments are often worse than the disease they are trying to destroy; having to prematurely confront your mortality and the devastating effects it can have on your relationships and your psyche is a punishment no one is evil enough to deserve.  But on any given day as an ovarian cancer patient, with a five-year survival rate of less than 35%, it’s not hard to be jealous of the breast cancer patients with their potential for cure. Which we mostly don’t get. Ever.

So aside from pinkwashing consumer products and Walks For Whomever being pretty lousy ways to drum up funds for research; aside from the ubiquitous ribbons fooling people into thinking they’re doing some good in the “War On Cancer” that’s been failing miserably for forty years; aside from it distracting attention from preventing cancer by forcing corporations and governments to clean up toxic chemicals and environmental hazards, Pinktober overlooks the fact that there are other, deadlier forms of cancer in the world that could use some of the Pink Juggernaut’s P.R. clout and donation dollars.

It’s insane that there’s any competition at all between colors and body parts and the organizations that work to fund research looking for cures. In the absence of the kumbaya/world peace global generosity that clearly isn’t coming any time soon, I just want to point out that sick is sick, all cancer sucks, and to devote an entire month to fighting just one ridiculously unjust medical diagnosis is pretty closed-minded.

For more information on ovarian cancer, its symptoms, and how you can help, visit www.ocna.org or www.ovationsforthecure.org. For more pith and vinegar from me, visit www.carcinista.com.

© 2010 The Carcinista.

Friday, October 15, 2010

US News and World Report

One of the most popular pages on my blog is the "Free Stuff for Cancer Patients" post.  I was interviewed about my experiences taking advantage of some of these services in an article for US News and World Report.

Thanks for talking to me, Angela.   I'm glad these services are getting a wider audience because all of them are incredibly helpful to recovery.

(Well, maybe not the fishing one, but I'm squeamish.)  

Thursday, October 14, 2010

Want to see me? Well, then.....

This month I have been inundated with emails from companies sharing their pink promotions.  Most of these requests are thinly disguised ads for products. Companies, we know you are using social media to try to get the word out about your products.  It's the way of the world, but  I ignore most of them, and I'll tell you why.  There are two criteria for my doing it:  I have to believe in the thing they are selling, and they have to give me something.

This is America, and I'm a capitalist.

A company can't advertise in a newspaper or magazine for free, even if they are going to donate money to cancer awareness, so why do they think they should be able to do it on a blog?   I almost feel like they are trying to take advantage of my having cancer, or feel I'm unprofessional and will just post anything.    I guarantee you I've worked as hard on this blog as anybody who puts out a print publication does, albeit with less overhead.  I should be compensated if they think I have enough readers to make it worth their while.

(True Religion jeans, are you listening?  I love the jeans but I'm not selling them on my site without being offered a couple pair of my own - even if they have pink crystals on them and you'll donate 20k to Komen.  FYI: I wear size 26.  Contact me for my address, and only then I'll include your widget.)

Even a link back can be an incentive for me - yes, I can be bought, as long as I believe.

Anyway, Harvard Pilgrim Healthcare contacted me.  They are setting up a site called well, then where people share their health and well-being tips, and they asked me to participate in exchange for an HD Flip Mino video camera.  I checked out the site, and decided that it was a valuable thing to do. It's hard to argue against real people sharing tips for healthier living, and it may well end up being the YouTube for healthcare.  So, I decided to do it, even though I didn't really need the compensation (and I prefer seeing myself in standard definition, or better yet, with my contacts off).

It's an interesting project, and I would have participated anyway had I known about it.

(But, I'm not giving the camera back.)

I will be hanging out in the "Live with Cancer" section.  See my first video here, and I'd love it if you could comment and share your cancer surprise, or like it on facebook or share with any other social networking you belong to.  If you can't hear it well, I apologize.  I have heard that some people are having trouble with the sound (although I can hear it perfectly), so turn up your speakers, and I'll figure it out for the next one.

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Monday, October 11, 2010

Clean Bones



My bones are as bleached, white and pure as those of a 1880s pioneeer in the Mohave desert.

I guess it's awful, but I wasn't relieved. Mostly because I didn't really think cancer had spread to my bones, especially since I am still in treatment. But, I had hoped for some clue what is causing this pain, and my knowledge is as arid as that desert.

I got nuthin'.

The pain has changed and I know now that it is an organ or visceral pain. It's on the left side of my lower abdomen and is tender to the touch.

I see my primary care physician on Wednesday (yes, another doctor's appointment) and will ask him to check it out. What I really don't want to do is start a long testing/diagnostic process, so hopefully, he's got some magic to pull out of his ass sleeve. At least he'll know what organ is in the area that hurts - I don't even know that much.

If he doesn't know, I don't think I'll pursue it too hard. Either it'll go away or it'll kill me. That was the attitude I had before I got cancer, and maybe I should adopt it again. I just don't have time for mysterious pains.

And, talking about mysterious pains is as boring for me as it is for the listener reader. So, unless my colon spills through my belly button, I think I'll just pretend like it's not happening.

Sunday, October 10, 2010

Lady TaTa Sings

Whether you like Pink October or not, a few good things come out of it. This is one of them.

Saturday, October 9, 2010

They know we know they know: Techs and Bone Scans

It's gotta be hard to be a radiology technician.  We go in for tests, and they see the results right then.  But they aren't allowed to tell us because they aren't doctors and aren't supposed to interpret the results.   

But, we know they know.  They know we know they know.  We want to know, so we anxiously scan their every word and movement for any "tells."  It's an odd little game played in the medical world.

I've had techs who will kind of wink and let you know all is okay without actually saying anything.  I've also had techs who were easily duped into revealing things.  I have had some who were impassive but allowed you to look at your films without comment.

Yesterday though, I got nothing. Her boss should give her a raise but I never want her as my tech again because I'm still clueless.

A bone scan is divided into two parts:   Injection and Scan.

At 10:45, I went to the nuclear imaging center and was injected with a radioactive tracer, and told to come back for the scan at 2:00.  During the course of three hours, the radioactive isotopes absorb into your bones.

I went back to work, drinking lots of water as was suggested. (Okay, it was really coffee, there was a Starbucks on the way back.)   I should have thought to email the science teachers to see if they had a Geiger counter.   Might have been fun for the kids to see a radioactive secretary!

I arrived back at the facility at 2:00 and was put into the same machine that does the MUGA tests.

The rad tech had me lie on my back, arms by my sides, and positioned the camera over the area that hurts.   I had to lie still for three minutes while the films were taken.

Then she came out and said, "Have you ever broken any bones before?"

"No."  Why is she asking me that?  Does she see something that looks like a broken bone?  Does mets look  like broken bones on scans?

She repositioned me and told me to lie still for another three minutes  - the camera is still over the part that hurts.

(Why is it that the second you are told to lie still and not move, things start itching?)

That set was done and she came out and said, "Have you ever been diagnosed with arthritis?"

"No."  She is still taking films of the parts that hurt.  Oh no, she sees somethingWell, maybe I have arthritis.

"Okay, another three minutes, lie still."

Three minutes later, "Have you ever been diagnosed with osteoporosis?"

Now I'm  a teeny bit freaked out.

"No, but I do have osteopenia."  My bones are crumbling!  She sees damage all over that area! Why else would she ask those questions?

"We are going to do one more set in this area and then we are going to do the full body scan, which will take 18 minutes.  Lie still."

My nose itches.  I need to move my neck, this is uncomfortable.  I want to see my bones, it would be cool to see my skeleton, maybe I'll ask her. 

Ding, the bell signaling that set being over rings.


"What is your height and weight?"  What kind of question is that?  It's right on my forms.  Why is she asking that?  Does it have anything to do with what she sees? It can't, that's a boring question -  I can't even scare myself by making anything up about that question!  Maybe all these questions are routine and the timing is just bad.

"Time for the full body scan.  You'll need to lie still for 18 minutes, then we are done."

"Okay, hang on while  I scratch."  I  scratched my arms, my nose, moved my neck and adjusted.  She said, "Ready?"

"Yes."

Damn, I'm still itching. Oh well, I can ignore it for 18 minutes.  Maybe I can get a quick nap in.  No, I can't because my back hurts.  I'm in the wrong position.  Oh, why didn't I move more or prop something under my neck better?  Okay, I can do this.  I'm zoning out, getting into a zen-like state.  Hey, I can't feel my arm anymore!  How weird!  Is it on my hipbone?  I hope I didn't leave it on the hipbone or that might interfere with the tests.  I know this is a big waste of time anyway, since the pain is really starting to feel like it's an organ inside me.  It hurts to push on now.  That means I'll have to start this diagnostic process all over with new doctors, maybe a GYN.  I don't have time for this!  Hey, I hear the tech talking.  She's talking to somebody else back there, a male.  He's the guy who did my first MUGA and let me see my heart, which was awesome.  Are they looking at my films?  Am I hearing concerned voices? I wish I had super-sonic hearing.  That would be the superpower I'd choose if I could have one right now.  Flying would be cool too, except that I'm afraid of heights.   Wait, they are laughing.  That means I don't have cancer in my bones, they wouldn't be standing back there looking at my films and laughing about it right?  Although, I've heard people in the medical profession can get pretty callus.  Damn, now my neck is getting stiff.  I am going to ask to see my skeleton, that would be cool.  Are mets supposed to show up as light spots or dark?  I forget.  I have to pee.  She made me pee before we started, all that coffee water I drank is really catching up with me now.  I can't hold it as long as I used to, I guess that's what getting old means.  I think I'm dozing off.  But, my knee is itching.....

The little bell rings that  means the films are done and she comes out and says, "Stay there while I make sure the film is good."  I move my arms and arch my back and hope I don't have to do it again.  The table is padded but it feels like I've spent the last hour lying on a wooden park bench.

"We're good."  I stiffly get down, rubbing my back and my neck.  Honestly, I feel like I'm 90 years old.  Lying on a padded table for 40 minutes would not have hurt me one year ago.

"Hey, can I see my skeleton?"     

The tech literally looked shocked at that question.  Like she'd never heard anybody ask such an audacious thing before.

"Um.   Ah.....ah.... {pause}  No." 

"Oh"

"Um, you uh, your doctor might have the films or not.  He can let you see them."

"Okay, thanks!"

Why was she so nervous?  Does she think I can read radiology films?  I just wanted to see my bones!  She doesn't want me to see because she thinks there is something wrong.  I bet she'd say yes if the scan  was clean. Great. I have mets.  Just when I figured it was an ovary or something.  Shit, what if it's an ovary AND mets?"  

I got up to leave and the other tech was behind me.  I said bye and he said bye.  Did he just look at me with pity?

They know, and we know they know.  

Monday, I should know too.


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Sunday, October 3, 2010

Myth #1 about Breast Cancer



Since I've yet to see Jamie Hyneman put on a pink beret and take this subject on, I guess I have no choice. I'm always the one who has to do the dirty work.  I have whined innumerable times (as my husband will attest):  if I don't do it, it doesn't get done.

So, what do I want to do?  In honor of breast cancer awareness month, I figured I'd take it upon myself to make you all a little more aware about some of the myths surrounding breast cancer.

The first myth I would like to bust is the famous statistic.   You have all heard it.

1 in 8 women will get breast cancer.

Let me tell you a true story.  Somewhere this Pink October, a group of forty 20-something  women will gather, with plans to volunteer for their favorite breast cancer charity.  They will be exhorted to look around the room, and will be told in ominous tones that 1 in 8 of them will be diagnosed.  Wide-eyed with sympathy and fear, their eyes will wander from woman to woman,  wondering who the unlucky five are.

Which women will be breastless and bald in the next few years?  Will it be them?

The likely answer?

Zero.

That 1 in 8 statistic is a lifetime risk statistic. 

Now, if you are age 90, sitting in your wheelchair in a nursing home dining room with 40 other 90 year old women, all of whom are hoping today is chocolate pudding day -  that's the time to look around and wonder who will get it (or has had it). That is when the famous statistic comes in to play. 

Here are some facts taken from the SEER database.  During 2002-2006, women aged 20-24 had the lowest breast cancer incidence rate, 1.4 cases per 100,000 women.  I suck at math, but it appears to me that is not 1 in 8.  (I'm not quite sure what to say about that poor .4 woman)

Women aged 75-79 had the highest incidence rate, 441.9 cases per 100,000. 

Statistics are difficult for most people to understand, but that 1 in 8 figure is really an average probability for the entire population of women over a lifetime, not a statement about individual risk.

A more meaningful number, although still not accurate individually, would be statistics by decade.  A 50-59 year old woman has a 1 in 38 chance of getting cancer, but again, that is across all spectrum of women, including those with the BRCA gene, family history, lifestyle risks, race/ethnicity, reproductive history, socioeconomic status, etc.

The older you become, the more likely you will get cancer - any kind of cancer.  Here are some breast cancer incidents by age I found from cancer.gov's site.

  • from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
  • from age 40 through age 49 . . . . . . 1.44 percent (often expressed as "1 in 69")
  • from age 50 through age 59 . . . . . . 2.63 percent (often expressed as "1 in 38")
  • from age 60 through age 69 . . . . . . 3.65 percent (often expressed as "1 in 27")
Do you see how the decade risks don't match the lifetime risk statistics?

Why am I busting this myth?  Because, I think it's irresponsible to take the scariest one and use it out of context to further a cause.  Breast cancer is an awful disease, no question.  It can be a deadly disease.   We don't need to make it worse by telling lies about an individual's risk - even for a good cause.

The reason why so many woman think they have a 1 in 8 chance of getting breast cancer is most likely due to Pink October and the entire machine of "cause marketing."  Without fear and an element of danger, people would be less likely to participate in the big marketing push.  If you think you and your loved ones won't get this disease, you might not want to buy the more expensive pink cans of soup, go on the cure runs, and donate.  It's human nature - we are interested in helping when we feel it's close to us. 

Knowing human nature, some marketing guru took a lifetime risk statistic and turned it into a frightening mantra with no context, "1 out of 8 women will get breast cancer" to make it seem that cancer is right around the corner, and you could easily be next.  If you think you are next, you are more likely to help.

I realize that most of the people who read this blog are the ones who have had that lightening strike - either them or their family or friends.  Even misused statistics make sense when you are one of the chosen few, and you might be shaking your head right now.  But, because I got it at age 51, because it's real to me, because I'm unlucky - it still doesn't mean one out of eight 51 year olds will get it.  It doesn't even mean 1 in thirty-eight 51 year olds will get it.

In that room of forty 90 year olds who are enjoying their chocolate pudding, also keep this in mind:  7 out of  8 of them have not had breast cancer.

By all means, help out if you so desire.  Run, walk, donate.  But next time you hear a flippant statistic like that, think critically and remember the Mythbusters.

1 in 8 women will get breast cancer?



I just wish I'd gotten to blow something up.


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More on statistics:

To calculate your risk of getting breast cancer, use this assessment tool.   I did the questions as I would have answered them on my 50th birthday.  My odds?

5 Year Risk

  • This woman (age 50) 1.1%
  • Average woman (age 50): 1.3%

Explanation

Based on the information provided (see below), the woman's estimated risk for developing invasive breast cancer over the next 5 years is 1.1% compared to a risk of 1.3% for a woman of the same age and race/ethnicity from the general U.S. population. This calculation also means that the woman's risk of NOT getting breast cancer over the next 5 years is 98.9%.

Lifetime Risk

  • This woman (to age 90): 9.9%
  • Average woman (to age 90): 11.2%

Explanation

Based on the information provided (see below), the woman's estimated risk for developing invasive breast cancer over her lifetime (to age 90) is 9.9% compared to a risk of 11.2% for a woman of the same age and race/ethnicity from the general U.S. population.

(I shoulda played the lottery!)


Here is your SEER statistics (and highly readable information) from Cancer.org

Statistics on Lifetime Risk of developing cancer.



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Saturday, October 2, 2010

Watching the odometer spin

I just wanted to point out, that in 13 months exactly, I have reached 100,000 page views.  ------>

Thank you for reading my blog and letting me share my story with you.


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Get your mammograms, I say

And, I said it in an interview for Northwestern University.

I'm famous.


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Friday, October 1, 2010

Putting the Aware in Breast Cancer Awareness Month

So, as the festival now known as Breast Cancer Awareness Month begins, I'm wondering:

Who on this big blue planet is still not aware of breast cancer?  I'm guessing somewhere deep in the Amazon, a monkey has tied a pink ribbon to a tree in honor of October.

Do we still need an entire month dedicated to "awareness?"  And what, exactly, are these awareness programs supposed to do?  Aside from, you know, making you "aware."

Wait.....

Are you aware?  Well,  you are because you are reading my blog.  Good for you.

So, let's talk about your neighbor.  Does your neighbor know anything about breast cancer?  

Anything at all?

I'll bet that guy who doesn't water his lawn has no clue that there are dozens of different types of breast cancer, all with different characteristics, disease processes and treatments.  

That lady who leaves the paper on her porch for days?  She has no idea that breast cancer comes in stages but the staging isn't a promise.  She doesn't know how fickle breast cancer is - that someone with metastatic cancer can live for ten years, but a person with a small, stage one cancer can be be diagnosed with mets a year later and die within four months.

I'll bet that high school kid with the I heart boobies bracelet has no understanding that breast reconstruction ends up looking nothing like a boob job.  Or a boob.

Do you think the guy out working on his car realizes that there is no "race for the cure" for those Stage IV ladies, because they aren't going to make it to the finish line? 

Does grandma with her little barking dogs know anything about the BRCA gene, oncotypes, ER/PR or the Bloom Richardson scale?

Do you think that the Pink Awareness campaign makes any of this clear?

I don't.  I know this is truth because I've lived it.  Until I was diagnosed, I didn't know anything more about breast cancer than it was "breast cancer."  I thought if it was caught early, you lived, and if it was caught late, you died.

I've come a long way, baby, but it had nothing to do with the month of October.  Before my own diagnosis, I was as ignorant as the cute little MILF's who are jogging down your street in their Juicy Couture, ponytails bouncing behind their pink visors.  Like them, I thought cancer was cancer and a cure was coming.  Of course, you know me, I'd never actually run, but I bought my pink soup, thinking I was doing cancer victims a solid.

I know better now.  You can't cure breast cancer because breast cancer isn't one disease.

So, how do we solve the problem of awareness?  (That question can only be asked if we agree that people ignorant about the details of breast cancer is problematic - not one I'm willing to concede, but I'll play along.)

Maybe it would help awareness if companies would name products after types of breast cancer.

Think of the possibilities!  Keebler could make HER2+ cookies that crumble faster than all the rest. Scotts could make Triple Negative lawn seed that just keeps reproducing everywhere.  Maglight could come out with IBC flashlights - they burn bright and hot when turned on.  Or, maybe ADT could produce an ILC alarm system, which is undetectable for years.  Kleenex could get in on the action by making Mucinous-branded tissue.

Of course, it could get complicated.   What if your HER2+ cookie is USDA Grade 3? You'd end up with a bag of unrecognizable, moldy crumbs.

Living in a media and celebrity saturated culture, perhaps we should get celebrities involved in the awareness campaign.  In fact, I propose a campaign featuring Lynne Redgrave.....oh....wait.  

Wrong message. 

Seems to me like most companies jump on the breast cancer awareness campaign not to make you aware of breast cancer, but to make you aware that they have products to sell you. 

I don't begrudge money going to cancer research, and I don't mind the races and fund-raisers by people wanting to help - but the big October marketing campaign, with pink Dyson vacuums and pink Chi flat-irons, and pink products and ribbons in every store is very hard on many women who are living with and dying of this disease.

A lot of people think breast cancer victims are grateful for pink October. The fact is, many women with breast cancer find Pink October a constant reminder of a painful time in their lives.

I thought you should be aware of that.



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