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.)  

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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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.

Lady TaTa Sings

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

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 something!  Well, 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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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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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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