This Friday, I will be on a plane, albeit one a bit smaller than I prefer, bound for Washington DC to participate in the National Breast Cancer Coalition advocacy summit. That big clock above the blog posts? Deadline 2020? That's the genius of the National Breast Cancer Coalition.
These are the people who are trying desperately to change the conversation. And with good reason, don't you agree? We are insane with the breast cancer thing. I've learned that insanity is when you keep doing the same thing over and over again and expect a different result. Some might argue. Some will say we've made progress. Some will say we are saving more lives and I won't disagree. We have made progress.
Early detection is saving and will continue to save lives but we've known THAT for many years. We've found ways to minimize the side effects of chemotherapy. I don't know who exactly perpetrates this factoid but for me, that seems like an urban myth. I double dare you to wait near a chemotherapy suite and ask one of the women who is either entering or exiting how they feel in the days immediately following their chemotherapy.
Plastic surgery techniques have come far. This is NOT an urban myth. The plastics guys seem to have made the most progress. They have come up with some ingenious methods to reconstruct us once we've taken the big plunge. They are moving fat around, reconnecting blood supplies, using implants, taking muscle from other parts of our bodies to create the illusion of breasts. Still. Let's make no mistake here. They are not breasts. It's slight of hand and an illusion. And make no additional mistake. Some women are severely and seriously compromised after surgery. But it looks good. Forget about how it feels. Billy Crystal...... You Look Mahvelous.......Absolutely Mahvelous.
None of this takes away from my "we are insane" position. We're barking up the wrong tree. We're moving in the wrong direction. We are doing little more than marking time. Meaningful progress matters. The progress we have made stopped being meaningful about twenty years ago. This week I will gear up to add my voice to the hundreds of others who will be in Washington DC demanding better.
Coincidentally, the DC Avon Walk is this weekend, too. I don't think I'll arrive in time to help greet the walkers if Army of Women has a sign up table at the walk registration but Army of Women will have a table at the advocacy summit. And I will be at that table lending a hand whenever I can. If you are in the DC area, come see me at the Hyatt Crystal City. If you are attending NBCC, time to start planning for the meet ups!
Are you going? Roll Call........ Kindly sign the attendance sheet.
Monday, April 30, 2012
Friday, April 27, 2012
LET'S HEAR IT FOR THE BOYS......
This is going to be short and sweet. I have plenty to say. With a capital P but there are too many loose ends I have to tie up and they are clogging my brain's ability to put together anything that resembles a cohesive sentence.
Life has a funny way of twisting and turning. I started out blogging with one thought in mind. Chemobrain, which is NOT funny, until you force it to BE funny, was going to be the heart of this blog. I suppose on some level it is. After all, isn't the hallmark of chemobrain doing the mental zig zag? I don't even want to tell you how many email responses I found on this laptop. Unsent. Unfinished because I was distracted by something external. The UPS guy with my shoes. Or internal. I really wanted those Louboutin's so let's do the internet hunt.
I want to close out the week by thanking two men. I'm singling out only these two because they are tied directly to this blog. And they both had my back when I went on two recent rants. They deserve recognition and my most sincere thanks.
Close to a month ago, I got irritated with that Pink Speed Dating Event. The one where they are charging $2500.00 to only eighteen different hand picked Pink Profiteers so those lucky chosen ones can pitch their pink products to I don't know who. I'm still a little confused about that part of the event. It says they will be pitching their products to "the media" and I'm trying to understand exactly what that means. For advertising space? Or are they pitching to some other group of people for a spot on the shelves of some store? No matter. The whole thing is a farce. And guess what? Registration is closed and they got their eighteen products all lined up. Maybe someone at NBCC will know something about this. The event is the day after I get home. In NYC.
My anonymous "friend" left a comment that I did not appreciate when I tried to expose that event as the epitome of what I believe to be disgraceful cause marketing. I felt like I was being berated by said anonymous friend. I shut up and I didn't even reply to my buddies who commented on that blog entry. I chose to stay out of the fray. It's not like me to let the responses go without acknowledging them. When someone leaves a comment, I don't know about blog etiquette, but my human being etiquette says, "If someone took their precious time to leave a comment, it's proper for me to acknowledge the comment." I'm grateful when I see comments and I want to share my gratitude. Maybe a "real blogger" isn't supposed to do that.... and if that's the case, so be it. I'm sticking to my values and my beliefs. I'm not about to start molding myself to fit any prearranged notion.
Because the comments are always open and unmoderated and because I've allowed anyone to post (even "anonymously") there could have been a war of words between me and the person who chose to have some pretty strong opinions but not the backbone to man up and identify him or herself. Some very close blog buddies jumped to my defense. Weeks went by and I noticed another comment pop up on that particular post. It was from a man. And it was a man who has breast cancer. We happen to have a family friend who is a male breast cancer patient so I am quite conscious of the fact that men DO get breast cancer. Oftentimes, when I'm writing and I type "women," I am thinking (and men, too) but by and large breast cancer in men is what you might call an orphan disease. I'm thinking I may start typing wo(men) as a reminder to anyone reading that we wo(men) do not own the rights of exclusivity to the disease that is Breast Cancer.
Huge digression. Ultimately, I DID respond to his comment on that post. It takes guts (just my opinion) for a man to comment on what is primarily a bitch blog and walk right into the midst of what might have turned into a cat fight and it is especially gutsy when the comment begins with the words, "as one of the few men with breast cancer......" Not only was I exceptionally touched by his willingness to share some of his experiences, he signed his name. His full name. His parting words were to anonymous: GFY. The man has my back on that one. I am so appreciative. It was unexpected. And it deserves a public thank you. Charles, a true gentleman. And yes, gentlemen can, do and SHOULD feel free to use the "F" word, particularly when jumping to the defense of a woman.
The other man I want to thank also had my back when I got pissed off. He jumped in when I was sharing my blog about those two french guys who started that Boobstagram thing. I was having a twitter conversation with another woman. She had a link to the pink PORN bus. We were trading stories about pinkverts. Does that require a definition? You know I like to make up words. I can't claim that as my own. I read it somewhere. Pinkvert=Pervert who finds a way to use breast cancer because sex sells. The pinkverts are to the sex end of this gig what the pink cap wearing volunterrorists are to the cause marketing side of the gig. Can't claim THAT word either. They are both pretty witty words, don't you think?
The twitter exchange between a new woman friend and I was picked up by a man who, in 140 characters, managed to share that he was somewhat stunned at the stupidity of the boobstagram thing. The next morning, I was copied in on a tweet with a link to a blog. This is GENIUS and I want to thank HIM for not only stepping out about HIS testicular cancer but for taking that cancer and doing a side by side ..... never mind.. you simply have to read it for yourself. And I have to say thank you because he took the time to quote some of the things I said in my rant. And I LOVE his rant. It's a great companion piece. Definitely another ballsy maneuver. So thank you, Jeff Fecke for reminding us it's not about saving body parts but it's about saving PEOPLE. Saving LIVES. And thank you for having my back.
Life has a funny way of twisting and turning. I started out blogging with one thought in mind. Chemobrain, which is NOT funny, until you force it to BE funny, was going to be the heart of this blog. I suppose on some level it is. After all, isn't the hallmark of chemobrain doing the mental zig zag? I don't even want to tell you how many email responses I found on this laptop. Unsent. Unfinished because I was distracted by something external. The UPS guy with my shoes. Or internal. I really wanted those Louboutin's so let's do the internet hunt.
I want to close out the week by thanking two men. I'm singling out only these two because they are tied directly to this blog. And they both had my back when I went on two recent rants. They deserve recognition and my most sincere thanks.
Close to a month ago, I got irritated with that Pink Speed Dating Event. The one where they are charging $2500.00 to only eighteen different hand picked Pink Profiteers so those lucky chosen ones can pitch their pink products to I don't know who. I'm still a little confused about that part of the event. It says they will be pitching their products to "the media" and I'm trying to understand exactly what that means. For advertising space? Or are they pitching to some other group of people for a spot on the shelves of some store? No matter. The whole thing is a farce. And guess what? Registration is closed and they got their eighteen products all lined up. Maybe someone at NBCC will know something about this. The event is the day after I get home. In NYC.
My anonymous "friend" left a comment that I did not appreciate when I tried to expose that event as the epitome of what I believe to be disgraceful cause marketing. I felt like I was being berated by said anonymous friend. I shut up and I didn't even reply to my buddies who commented on that blog entry. I chose to stay out of the fray. It's not like me to let the responses go without acknowledging them. When someone leaves a comment, I don't know about blog etiquette, but my human being etiquette says, "If someone took their precious time to leave a comment, it's proper for me to acknowledge the comment." I'm grateful when I see comments and I want to share my gratitude. Maybe a "real blogger" isn't supposed to do that.... and if that's the case, so be it. I'm sticking to my values and my beliefs. I'm not about to start molding myself to fit any prearranged notion.
Because the comments are always open and unmoderated and because I've allowed anyone to post (even "anonymously") there could have been a war of words between me and the person who chose to have some pretty strong opinions but not the backbone to man up and identify him or herself. Some very close blog buddies jumped to my defense. Weeks went by and I noticed another comment pop up on that particular post. It was from a man. And it was a man who has breast cancer. We happen to have a family friend who is a male breast cancer patient so I am quite conscious of the fact that men DO get breast cancer. Oftentimes, when I'm writing and I type "women," I am thinking (and men, too) but by and large breast cancer in men is what you might call an orphan disease. I'm thinking I may start typing wo(men) as a reminder to anyone reading that we wo(men) do not own the rights of exclusivity to the disease that is Breast Cancer.
Huge digression. Ultimately, I DID respond to his comment on that post. It takes guts (just my opinion) for a man to comment on what is primarily a bitch blog and walk right into the midst of what might have turned into a cat fight and it is especially gutsy when the comment begins with the words, "as one of the few men with breast cancer......" Not only was I exceptionally touched by his willingness to share some of his experiences, he signed his name. His full name. His parting words were to anonymous: GFY. The man has my back on that one. I am so appreciative. It was unexpected. And it deserves a public thank you. Charles, a true gentleman. And yes, gentlemen can, do and SHOULD feel free to use the "F" word, particularly when jumping to the defense of a woman.
The other man I want to thank also had my back when I got pissed off. He jumped in when I was sharing my blog about those two french guys who started that Boobstagram thing. I was having a twitter conversation with another woman. She had a link to the pink PORN bus. We were trading stories about pinkverts. Does that require a definition? You know I like to make up words. I can't claim that as my own. I read it somewhere. Pinkvert=Pervert who finds a way to use breast cancer because sex sells. The pinkverts are to the sex end of this gig what the pink cap wearing volunterrorists are to the cause marketing side of the gig. Can't claim THAT word either. They are both pretty witty words, don't you think?
The twitter exchange between a new woman friend and I was picked up by a man who, in 140 characters, managed to share that he was somewhat stunned at the stupidity of the boobstagram thing. The next morning, I was copied in on a tweet with a link to a blog. This is GENIUS and I want to thank HIM for not only stepping out about HIS testicular cancer but for taking that cancer and doing a side by side ..... never mind.. you simply have to read it for yourself. And I have to say thank you because he took the time to quote some of the things I said in my rant. And I LOVE his rant. It's a great companion piece. Definitely another ballsy maneuver. So thank you, Jeff Fecke for reminding us it's not about saving body parts but it's about saving PEOPLE. Saving LIVES. And thank you for having my back.
Thursday, April 26, 2012
THE WEIGHT OF THE WAIT
It's been 48 hours.
I gave my oncologist a hug and got the big kiss off.
Purchased several pairs of shoes.
Had a day of volunteer activities yesterday.
Able to go pick up one pair of shoes today.
Two other pairs? One shipped, and, of course, the one I HOPE to wear on Saturday night, still processing. Must wait.
Today....... mom's at the oncologist. And so..... again. I. wait.
I.hate.to.wait.
I.hate.THE.wait.
I Love You, mom.
xoxoxox
I gave my oncologist a hug and got the big kiss off.
Purchased several pairs of shoes.
Had a day of volunteer activities yesterday.
Able to go pick up one pair of shoes today.
Two other pairs? One shipped, and, of course, the one I HOPE to wear on Saturday night, still processing. Must wait.
Today....... mom's at the oncologist. And so..... again. I. wait.
I.hate.to.wait.
I.hate.THE.wait.
I Love You, mom.
xoxoxox
Wednesday, April 25, 2012
THE BIG KISS OFF
I don't know even know where to begin. I'm not one to be at a loss for words but the support I felt yesterday was simply breathtaking.
First, if you aren't a twitter person, I'm FREE! I am officially on annual follow ups with the oncologist. Technically, I'm being put in the "survivorship" program. In other words, once a year and in still other words, I likely won't even see the oncologist. It will be the nurse practitioner. Naturally, if something isn't right, he's still my doctor, but for now, I got the big kiss off.
I will be on femara for another five years but I already expected that would be the case. I got that heads up at one of the seminars I attended. We discussed the new Choosing Wisely guidelines with the blood tests for the tumor markers. I love my doc. He explained, for now, MSKCC is continuing to do the tests but they are reviewing the guidelines and will make a formal decision some time in the near future. It seems likely they will stop doing this test.
I guess that means I honestly have morphed into A Flying Wallenda. No Net. (Did your eyes read that as "not yet" because mine did, every single time I did a read through...just curious??) Like I said the other day. It starts on a runaway train and now I simply must take that first step on to the wire. I just saw a piece about the Wallendas on television and I was struck by that very statement. Something about the hard part being while they are on the ledge, anticipating the walk to the other side... and once they took that first step, they just had to focus and concentrate on moving forward. Balance. Reaching the other side.
I have no net. The safety of the tests and the scans is on the ledge behind me. Now, I move forward. If I must stop and recenter, it doesn't mean I'm going to fall. It simply means I need to use that balance stick (or whatever the hell you call that thing) to get my footing back. The net makes it too easy to just toss it in when the going gets a little tough. The safety of the net is really stopping forward progress. The safety of the net can possibly get me to believe hurling myself off a building might not be such a bad idea---after all, I got that net. And now, No Net.
I am embracing NED. I know that recurrence thing will still creep up in some dark moments and I know, too, when that happens, I will be held up by the same group of amazing people who sent me tweets while I was waiting for the doctor yesterday...... and the very same group who were sending me tweets to share my joy hours later as I found myself in a celebratory shoe shopping spree. I consider myself most fortunate to have found my voice and in doing so, to have found myself surrounded by brilliant, caring and loving friends. I don't know how to say thank you for yesterday, except to say that I hope to be in a position to do for each and every one of you as you did for me.
Now.... a few random thoughts. Someone who reads this blog and has communicated with me via email needs some extra special thoughts sent his way today. His wife is likely in surgery as this is on your screen. Another good friend is getting results from her latest round of treatment.... Someone else has an oncology follow up within the next couple of days. My new friend DID make her appointment and she will need to know she's not alone, either.
And, today.... mom is where I was on Monday. She goes to see our oncologist for her follow up tomorrow. There is something so unnatural for a mom and a daughter to "share" the same oncologist. It's part of what drives me. And it's part of what scares me, too. She was NED for twenty years. And then, she wasn't. Hers was a local recurrence. Fortunately, local. We are survivors. Together. I'm officially at five years now. She will be there in about four months.
To everyone who is staring into the abyss: You are not alone. You are NOT alone.
And, having nothing whatsoever to do with this.....blogger has a new interface. I have yet to figure it out. I THINK it's been around for a LONG time but I refused to use it. Suddenly, I'm seeing a daily tweet about "My thoughts" with a link to this blog. I'm not big on self promotion so if you found yourself here from the twitter link....... welcome. Sooner or later, I will find the setting that will disconnect this auto tweet feature......
And SOONER or later, I will remember that the "schedule" calendar is formatted with Monday as the first day, meaning, what looks like it SHOULD be Wednesday on the little box is really Thursday... and this post should have been up already HOURS ago....... Sing it loud, sing it proud.... chemobrain.... attention to those details that in another life was my thing. Poof. Gone. It's the minutiae, not the ability. And yet, even knowing that, I need a mini me minutiae checker.......
One more AND.... and it's a biggee..... I want to thank Rann Patterson for featuring this blog (and by association, me) on Bella Online. Rann is the editor of the Cancer section of the magazine. She wrote a very powerful article and I am honored that she chose to share this blog with her readers. The article was posted yesterday. Seeing that was certainly a nice way to start what was, at the time, a scary day. Ended with lots of new shoes, but at the start......fear. Followed by celebration, followed by retail therapy gone completely amok.
Three stores, EIGHT pairs of shoes, five pairs already here, two being shipped because they didn't have my size, one has to be picked up on Thursday. Pre-sale. What the hell is that all about anyway? Pre-sale pre-selling..... If it weren't about a great pair of black pumps that I am getting for a great price, I'm pretty sure I'd be on a rant. But, there will be no ranting about shoes. I'm following the wise words of Marilyn Monroe and conquering the world.... "Give a girl the right shoes......." Well, I now have a decent selection of right shoes. And left ones, too.
First, if you aren't a twitter person, I'm FREE! I am officially on annual follow ups with the oncologist. Technically, I'm being put in the "survivorship" program. In other words, once a year and in still other words, I likely won't even see the oncologist. It will be the nurse practitioner. Naturally, if something isn't right, he's still my doctor, but for now, I got the big kiss off.
I will be on femara for another five years but I already expected that would be the case. I got that heads up at one of the seminars I attended. We discussed the new Choosing Wisely guidelines with the blood tests for the tumor markers. I love my doc. He explained, for now, MSKCC is continuing to do the tests but they are reviewing the guidelines and will make a formal decision some time in the near future. It seems likely they will stop doing this test.
I guess that means I honestly have morphed into A Flying Wallenda. No Net. (Did your eyes read that as "not yet" because mine did, every single time I did a read through...just curious??) Like I said the other day. It starts on a runaway train and now I simply must take that first step on to the wire. I just saw a piece about the Wallendas on television and I was struck by that very statement. Something about the hard part being while they are on the ledge, anticipating the walk to the other side... and once they took that first step, they just had to focus and concentrate on moving forward. Balance. Reaching the other side.
I have no net. The safety of the tests and the scans is on the ledge behind me. Now, I move forward. If I must stop and recenter, it doesn't mean I'm going to fall. It simply means I need to use that balance stick (or whatever the hell you call that thing) to get my footing back. The net makes it too easy to just toss it in when the going gets a little tough. The safety of the net is really stopping forward progress. The safety of the net can possibly get me to believe hurling myself off a building might not be such a bad idea---after all, I got that net. And now, No Net.
I am embracing NED. I know that recurrence thing will still creep up in some dark moments and I know, too, when that happens, I will be held up by the same group of amazing people who sent me tweets while I was waiting for the doctor yesterday...... and the very same group who were sending me tweets to share my joy hours later as I found myself in a celebratory shoe shopping spree. I consider myself most fortunate to have found my voice and in doing so, to have found myself surrounded by brilliant, caring and loving friends. I don't know how to say thank you for yesterday, except to say that I hope to be in a position to do for each and every one of you as you did for me.
Now.... a few random thoughts. Someone who reads this blog and has communicated with me via email needs some extra special thoughts sent his way today. His wife is likely in surgery as this is on your screen. Another good friend is getting results from her latest round of treatment.... Someone else has an oncology follow up within the next couple of days. My new friend DID make her appointment and she will need to know she's not alone, either.
And, today.... mom is where I was on Monday. She goes to see our oncologist for her follow up tomorrow. There is something so unnatural for a mom and a daughter to "share" the same oncologist. It's part of what drives me. And it's part of what scares me, too. She was NED for twenty years. And then, she wasn't. Hers was a local recurrence. Fortunately, local. We are survivors. Together. I'm officially at five years now. She will be there in about four months.
To everyone who is staring into the abyss: You are not alone. You are NOT alone.
And, having nothing whatsoever to do with this.....blogger has a new interface. I have yet to figure it out. I THINK it's been around for a LONG time but I refused to use it. Suddenly, I'm seeing a daily tweet about "My thoughts" with a link to this blog. I'm not big on self promotion so if you found yourself here from the twitter link....... welcome. Sooner or later, I will find the setting that will disconnect this auto tweet feature......
And SOONER or later, I will remember that the "schedule" calendar is formatted with Monday as the first day, meaning, what looks like it SHOULD be Wednesday on the little box is really Thursday... and this post should have been up already HOURS ago....... Sing it loud, sing it proud.... chemobrain.... attention to those details that in another life was my thing. Poof. Gone. It's the minutiae, not the ability. And yet, even knowing that, I need a mini me minutiae checker.......
One more AND.... and it's a biggee..... I want to thank Rann Patterson for featuring this blog (and by association, me) on Bella Online. Rann is the editor of the Cancer section of the magazine. She wrote a very powerful article and I am honored that she chose to share this blog with her readers. The article was posted yesterday. Seeing that was certainly a nice way to start what was, at the time, a scary day. Ended with lots of new shoes, but at the start......fear. Followed by celebration, followed by retail therapy gone completely amok.
Three stores, EIGHT pairs of shoes, five pairs already here, two being shipped because they didn't have my size, one has to be picked up on Thursday. Pre-sale. What the hell is that all about anyway? Pre-sale pre-selling..... If it weren't about a great pair of black pumps that I am getting for a great price, I'm pretty sure I'd be on a rant. But, there will be no ranting about shoes. I'm following the wise words of Marilyn Monroe and conquering the world.... "Give a girl the right shoes......." Well, I now have a decent selection of right shoes. And left ones, too.
Tuesday, April 24, 2012
ENTERING THE FOG, SCISSORS IN HAND
So... six years ago today, I was so convinced the envelope containing this was insignificant it was tossed aside for at least three hours before I finally decided to open it. I didn't have chemobrain in 2006. No clue what I was thinking. Really, I was thinking.... "This is no big deal. At All. I get these letters every year." I was an accomplished pro at The Letter. The only thing that was different? Year prior, this stuff would come on an index card. Enter HIPAA. The sealed envelopes, which in the past might have invoked terror? Not so much. My privacy matters. Unless, of course, I'm printing an image of the letter on a blog for anyone who stumbles this way to see. I'm invading my own privacy.
Little did I know, or little could I have realized I was very lucky to get this letter on a Monday. WTF? Seriously?? THAT mattered?? YES, It did. For whatever reason, both the radiologist and the gynecologist had late hours on Mondays. I was able to jump into action. Place the necessary phone calls. Set up the appointments. Get prescriptions faxed. I'm great in a crisis. Organizing my shit. That could not have taken more than fifteen minutes. Like I said. Pre Chemobrain.... I was pretty fabulous at springing into action and getting immediate results. Concrete and quick.
Good thing, too. Once those appointments were in place and after being assured by every person I spoke to in little more than fifteen minutes, "Just being cautious, this is nothing," and... I am talking at least six people including both doctors and the staff I had to take out in a defensive tackle to get those doctors on the phone....... IMMEDIATELY upon having my plans in place, I did what any normal person might do. I sat all by myself. At the kitchen table. And I cried for two solid hours before my husband walked in the door. Suffice to say, by the time he walked in, well, you know what you look like after tears have been spilling for two straight hours.
One hundred thirty five minutes earlier I ripped open the envelope, and very cavalierly, I tossed it aside. I can still see it floating, almost featherlike, from my hand, through the air on its way to the counter. Mid air, my eyes caught the words "calcium spots." In that very moment, life would NEVER be the same again. I'm doing what Steve Jobs described so perfectly when he beautifully explained the concept of connecting the dots backwards. And how you can only connect the dots backwards.
On April 24, 2006 at approximately 6PM, I became a passenger on what I like to call "The Runaway Train" and that letter was my ticket to board the train. Simultaneously, it was also my first step on The Highway To Hell. Who knew? Me...... I was just being a drama queen. I was making a mountain out of a sentence. Pulling out the phrases that had maximum impact and turning them into an epic disaster. D.R.A.M.A. --- Q.U.E.E.N.
If I was on a Runaway Train six years ago. On this very day. Today, in 2012, on this very day, I am Flying Without A Net. One of those odd coincidences. I have my six month oncology follow up today. Precisely six years To The Day. Five years post chemo. With an excellent prognosis. And Scanxiety. Even though I don't get scans. I just get bloodwork. Maybe. See prior posts. Not so sure WHAT will happen today. Only certainty... my only guarantee? Count on a full report. Hell. Maybe I'll video the whole damn thing and just roll tape.
There is a message in this. It's an important message. It's one worth repeating. Once you jump on The Cancer Train, as so many of my blogger buddies and twitter pals and fellow travelers can share: We are FOREVER changed.
I designated myself as the guest of honor at the #bcsm tweet chat last night. The topic was living with fear of recurrence. I guess, once again, I am LUCKY my doctor appointment is today. And I'm lucky the topic for the chat was exactly what the doctor ordered. Last night, I was held up by the support of more people than I can possible thank. Those lonely hours the night before oncology follow ups are awful. I had global support. I don't know how to begin to say thank you to all of you.
For the record. My logic brain knows I know I'm STILL being a d.r.a.m.a.---q.u.e.e.n. Chemobrain trumps logic brain every. single. time. Paper covers rock and scissors cuts paper. In that little analogy-my physical brain is the rock. Paper is logic and those scissors? I'm AnneMarie ScissorBrain. Hell, if Johnny Depp had Edward's Scissorhands, I can claim a scissor brain. And, my message? It doesn't really ever get EASY. This follow up crap.... once bitten and all that jazz... nope... It never gets easy. It just may get easIER.
And this would be a big PS to the tweep who used the #bcsm bat signal on Sunday night to mention she was six months late in scheduling her six month oncology follow up. I promise, I got your back. We all got your back. No words. Just pure global support and love. I hope you made your appointment.
And, a further PS to there rest of us...... as long as I had to do my normal wiki, IMDB, google detour to get some foundation for the Scissorhands reference...... a quote from the movie that some of us may appreciate....
 |
| Highway to Hell |
Little did I know, or little could I have realized I was very lucky to get this letter on a Monday. WTF? Seriously?? THAT mattered?? YES, It did. For whatever reason, both the radiologist and the gynecologist had late hours on Mondays. I was able to jump into action. Place the necessary phone calls. Set up the appointments. Get prescriptions faxed. I'm great in a crisis. Organizing my shit. That could not have taken more than fifteen minutes. Like I said. Pre Chemobrain.... I was pretty fabulous at springing into action and getting immediate results. Concrete and quick.
Good thing, too. Once those appointments were in place and after being assured by every person I spoke to in little more than fifteen minutes, "Just being cautious, this is nothing," and... I am talking at least six people including both doctors and the staff I had to take out in a defensive tackle to get those doctors on the phone....... IMMEDIATELY upon having my plans in place, I did what any normal person might do. I sat all by myself. At the kitchen table. And I cried for two solid hours before my husband walked in the door. Suffice to say, by the time he walked in, well, you know what you look like after tears have been spilling for two straight hours.
One hundred thirty five minutes earlier I ripped open the envelope, and very cavalierly, I tossed it aside. I can still see it floating, almost featherlike, from my hand, through the air on its way to the counter. Mid air, my eyes caught the words "calcium spots." In that very moment, life would NEVER be the same again. I'm doing what Steve Jobs described so perfectly when he beautifully explained the concept of connecting the dots backwards. And how you can only connect the dots backwards.
On April 24, 2006 at approximately 6PM, I became a passenger on what I like to call "The Runaway Train" and that letter was my ticket to board the train. Simultaneously, it was also my first step on The Highway To Hell. Who knew? Me...... I was just being a drama queen. I was making a mountain out of a sentence. Pulling out the phrases that had maximum impact and turning them into an epic disaster. D.R.A.M.A. --- Q.U.E.E.N.
If I was on a Runaway Train six years ago. On this very day. Today, in 2012, on this very day, I am Flying Without A Net. One of those odd coincidences. I have my six month oncology follow up today. Precisely six years To The Day. Five years post chemo. With an excellent prognosis. And Scanxiety. Even though I don't get scans. I just get bloodwork. Maybe. See prior posts. Not so sure WHAT will happen today. Only certainty... my only guarantee? Count on a full report. Hell. Maybe I'll video the whole damn thing and just roll tape.
There is a message in this. It's an important message. It's one worth repeating. Once you jump on The Cancer Train, as so many of my blogger buddies and twitter pals and fellow travelers can share: We are FOREVER changed.
I designated myself as the guest of honor at the #bcsm tweet chat last night. The topic was living with fear of recurrence. I guess, once again, I am LUCKY my doctor appointment is today. And I'm lucky the topic for the chat was exactly what the doctor ordered. Last night, I was held up by the support of more people than I can possible thank. Those lonely hours the night before oncology follow ups are awful. I had global support. I don't know how to begin to say thank you to all of you.
For the record. My logic brain knows I know I'm STILL being a d.r.a.m.a.---q.u.e.e.n. Chemobrain trumps logic brain every. single. time. Paper covers rock and scissors cuts paper. In that little analogy-my physical brain is the rock. Paper is logic and those scissors? I'm AnneMarie ScissorBrain. Hell, if Johnny Depp had Edward's Scissorhands, I can claim a scissor brain. And, my message? It doesn't really ever get EASY. This follow up crap.... once bitten and all that jazz... nope... It never gets easy. It just may get easIER.
And this would be a big PS to the tweep who used the #bcsm bat signal on Sunday night to mention she was six months late in scheduling her six month oncology follow up. I promise, I got your back. We all got your back. No words. Just pure global support and love. I hope you made your appointment.
And, a further PS to there rest of us...... as long as I had to do my normal wiki, IMDB, google detour to get some foundation for the Scissorhands reference...... a quote from the movie that some of us may appreciate....
"You can't touch anything without destroying it! Who the hell do you think you are hanging around here, huh?
Get the hell outta here! Go you freak! "
Monday, April 23, 2012
EVALUATE FIRST, POISON AND BURN AFTER
Last Friday, we were provided with still more proof that we are not losing are minds. We've already lost them. Tomorrow morning, when I'm in the oncologist's office for my six month check up, in addition to haunting him about:
I made an observation in that interview piece and once again.... VALIDATION! On April 20, Science Daily printed a column titled: Cancer Therapies Affect Cognitive Functioning Among Breast Cancer Survivors. This is most definitely NOT breaking news. It's just more proof that we really have lost our minds. Or, our brains are playing some kind of twisted hide and seek game. And, I've always known "chemobrain" isn't exactly the most accurate description. The research presented in this article from seems to point to the fact that those of us who received chemotherapy performed similarly as those who received radiation and WE all performed subpar to the control group of women who were matched by age and zip code and better luck.
I have chemobrain. You might have radsbrain. Doesn't have that same, nice melodic ring-radsbrain. The thing is, the study which was done at Moffitt Cancer Center in collaboration with researchers at the University of South Florida and the University of Kentucky seems to point to what WE already know. Basically, our brains have exited the building along with Elvis. What I especially like in this article? The lead author's take away. His suggestion?
- The constant lower back pain that seems to begin about ten days prior to each oncology follow up and goes away within 48 hours of seeing the doctor.
- The shooting pain that penetrates my temple...... time frame for this? See above. Pretty much identical to the back pain.
- The funky looking brownish dot. Eraser size. On the inside of my right wrist. No, it's not from a watch. No, it's not from banging it because despite my clumsiness being a 12 on a scale of one to ten, there is no way for me to contort my arm to bruise it in that spot. Besides, The Big C is four episodes in. Who doesn't want to share the melanoma journey with Laura Linney? Is this some kind of a joke??
- What's up with the Choosing Wisely stuff? Will we continue to do these tumor marker blood tests?? I feel better having them done to be quite honest. I don't like the idea of being a cancer patient with NO follow up screening whatsoever. Seems irresponsible. If I DIDN'T have cancer, I'd be going for an annual mammography. Now I HAVE cancer, NED, but yes, I HAVE cancer and NO screening? Yeah... that's not working for me...... That's going to be a big conversation.
- Then, we can talk about his patient..... the one I talked to..... the one who specifically asked about chemobrain..... the one who was advised by three oncologists that chemo was indicated in her case. And yes, it was a total coincidence that I spoke to her and yes, it was totally unknown to both of us that we had the same oncologist until we were well into our conversation. One of those odd coincidences.
- Finally, we can talk about The Giants! He has season seats. We have season seats, too. Possibly we'll be divvying up the tickets if we can't get our act together (back story) but technically, one of those seats IS mine.
I made an observation in that interview piece and once again.... VALIDATION! On April 20, Science Daily printed a column titled: Cancer Therapies Affect Cognitive Functioning Among Breast Cancer Survivors. This is most definitely NOT breaking news. It's just more proof that we really have lost our minds. Or, our brains are playing some kind of twisted hide and seek game. And, I've always known "chemobrain" isn't exactly the most accurate description. The research presented in this article from seems to point to the fact that those of us who received chemotherapy performed similarly as those who received radiation and WE all performed subpar to the control group of women who were matched by age and zip code and better luck.
I have chemobrain. You might have radsbrain. Doesn't have that same, nice melodic ring-radsbrain. The thing is, the study which was done at Moffitt Cancer Center in collaboration with researchers at the University of South Florida and the University of Kentucky seems to point to what WE already know. Basically, our brains have exited the building along with Elvis. What I especially like in this article? The lead author's take away. His suggestion?
"Since patients report cognitive problems that interfere with their daily activities, early workups should include tests to determine cognitive functioning prior to treatment."
I LOVE that suggestion...... Ya know why? In October, when I was talking the the Jo Cavallo at ASCO Post, this is what I had to say....
"Had I known developing chemobrain was a possibility, I would have insisted on a neuropsychological evaluation before starting any treatment so I could compare the difference in my cognition before and after therapy."
I feel like being a 6 year old whiny wise ass. Na Na NA NA NA....... Ha Ha.... Said it first. Beat you to it. Really, I'm boasting right now and I'm pretty damn proud of myself. I know, I KNOW... it's one of those Seven Sin Things. I'm so thrilled I was able to make this observation with my chemobrain and have a brilliant researcher with a Ph D come to the same exact conclusion after studying hundreds of women over several years. I think I earned the right: Be Proud. ARMY Proud. That's what pops into my head.... and guess what.... There's even a RIBBON for THAT....
In case you are a geek like me and need the "official version" rather than magazine version, this is what the abstract says.......
Abstract
BACKGROUND:
This study examined the influence of prior treatment on the course of cognitive functioning in breast cancer survivors. Changes in cognitive functioning over time were compared in breast cancer survivors treated with chemotherapy plus radiotherapy, breast cancer survivors treated with radiotherapy only, and women with no history of cancer.
METHODS:
Stage 0-II breast cancer patients treated with chemotherapy plus radiotherapy (CT group; n = 62) or radiotherapy only (RT group; n = 67) completed neuropsychological assessments 6 months after completing treatment and again 36 months later. Women with no history of cancer (NC group; n = 184) were assessed over a similar interval.
RESULTS:
A significant group × time effect was found for processing speed (P = .009) that reflected a tendency for the NC group but not the RT and CT groups to improve over time. There was also a significant group effect for executive functioning (P = .006) that reflected the NC group performing better than the CT and RT groups. Additional analyses found the administration of hormonal therapy was not associated with change over time in cognitive performance.
CONCLUSIONS:
Findings provide limited support for the view that changes in cognitive functioning in cancer survivors are attributable to chemotherapy administration and illustrate the importance of including a radiotherapy comparison group. Future research should seek to examine possible mechanisms that could explain the apparent prolonged impact of both chemotherapy and radiotherapy on cognitive functioning in breast cancer survivors. Cancer 2012;. © 2011 American Cancer Society.
Thursday, April 19, 2012
JERKS..... OFF FOR THE CURE
Do I talk about chemobrain? Do I rant about some social injustice? Do I bitchblog about the pink ribbon? Choices choices choices. What's a woman to do?? To the person who commented on my April 1 blog entry, The Fools Day Post, I'm pissed off again.
Go ahead and lecture me about how I shouldn't be pissed off. Go ahead and tell me I should just accept it because after all, isn't all awareness good and isn't anything that draws attention to "our cause" worthwhile? I called bullshit on that one. And nothing will ever change my mind. All awareness is NOT created equal and to be perfectly honest, there is NO NEED to raise awareness unless we are talking about doing so in an impoverished third world country where, yes, there is much work to do.
In this country, in Canada, in much of Western Europe, in Australia..... we are in great shape on the awareness front. We know what pink means. We know we need to get mammograms. We are aware of the DISEASE that is Breast Cancer. Wait! Apparently, there are still people who don't realize that every woman, by virtue of the the fact that she IS A WOMAN, is at risk of developing breast cancer??!? Well halle-friggen-lullia and thankfully we have some young enterprising French-men, self-annointed, self-appointed knights in shining armor who have swooped in on our behalf. The've come to rescue us. We are damsels in distress.
There's nothing sexier than a chivalrous man. (Is that even grammatically correct? Do I even care?) If that's at the core of a man and it's sincere, chivalry is okay by me. There are plenty of times I am beaten up by life and I'll gladly slip into the "weaker sex" role. Being weak makes me stronger. A man sees a problem and he might be inclined to feel the need to fix things. Including sometimes, things that are not broken.. or sometimes, they may intentionally break something so they have a reason to fix it.... or sometimes, there is just another motivation. Mostly, men want to fix things out of genuine concern. Most men. Not all, but definitely most. Some would rather leave us to our own resourcefulness and those guys are great, too. Some however, back me into a corner, take advantage of me or someone I care about and I can't help myself. Those people, not exclusive to men FOR SURE, but those blood suckers, male or female, just force me to summon my inner bra burning bitch, my rebellious raucous rowdy razor rip you to shreds tongue bitch.
Enter Boobstagram. An ingenious website (I really really REALLY wish there was a "universal sarcasm font") wherein women are instructed that "Showing your boobs on the web is good, showing them to your doctor is better." The website is filled with photographs of beautiful "boobs" in some exquisite lingerie. They have a Facebook page and a twitter feed. Breasts breasts everywhere. All beautiful breasts. The Facebook page looks a bit pornographic and I am FAR from a prude. Why, whatever do you mean Miss? I mean...... I'd like to morph into Diane Lane. I mean, this is a French website and I'm sayin' my mind is on that young, adorable, hot French guy in the movie Unfaithful..... I'm so there. In a New York minute. I'm not a prude. Yes, in that public restroom. Like I said, I'm NOT a prude. And, I'm a sucker for a man with a killer accent.
Ok.... So I'm not a prude. In my mind, I'm not a prude. In the real world, well, I'm not a kiss and tell kinda gal. Well then, Miss, Who Are You? I'm a woman who pulled the short straw by developing a disease. THAT disease. There is a line in the sand on Booby Beach. On one side are the women with breast cancer flanked by their fierce supporters and on the other side? Well, there are a mess of people capitalizing on the disease by turning everything into some sort of comic event. Who can come up with the most outrageous concept? Who can exploit women (many of whom are struggling already) in what may be the most egregious awareness campaign I've seen thus far?
I know many women whose bodies have been surgically altered, mutilated when you come right down to it, and despite the most masterful plastic surgeons, nothing is more perfect than having the parts we were born with. In tact. With real sensation, nerve endings sending signals to our brains. Not pulling. Not itching. I know those women. I am that woman. And, seeing my scars and dealing with the emotional fallout that can linger for years, the last thing I want to do is look at young, perfect, perky, scantily clad, suggestively posed "boob" shots.
Hell. I don't even think women with their own perfect body parts want to really scroll through pages and pages of that shit. Unless they are looking at the lingerie...... perhaps in search of the perfect undergarment...... perhaps in anticipation of running into some hot guy with an accent.... and they want to be perfectly accessorized should they find themselves in a situation where said hot guy is tugging at their blouse..... Obviously, since none of the lingerie is for sale, these photos are not for women. It's another one of those, slap a pink ribbon on it and call it awareness. Someone on twitter had some harsh things to say. I would have asked that particular twitter person to speak for herself but she is @SusanKomenGhost and she only speaks when she feels like making an appearance from the other side. I can't summon her at my will. This was her suggestion to her sister: Team up with these guys and call this campaign "Jack Off For The Cure." And yes, if you wondered, the title of this entry is a play on those words. I didn't want to be THAT crude right out of the gate.
To lend a bit of credibility, there is a "Why" page on this website. The "founders" introduce themselves and include the credentials that make them qualified to launch such a site and further explain how this site is the greatest way to raise awareness through fun rather than fear. Really? Has France ceded from this planet and moved to a new galaxy? OK... that's not fair either.....it's not France. Allow me to rephrase.... Have these two guys gone from human to alien and departed Planet Earth? What the HELL does that even mean? Fear to fun. There's nothing fun about breast cancer or screening for it either. I was at the screening game for 20 years and being told, "Don't get changed yet, there is dust on the film, we need more images" .... nothing but terror. Sheer terror. Most times it IS nothing but dust. Until one time, it's something like cancer.
On that same "why" page (which, by the way had me screaming, "yes, WHY?????") where we learn about their impeccable street cred, there are quite a few mentions of one of my other favorite words in the breast cancer arena. Sir, must you ask which word? Prevention. Not only does the word appear, there are explanations about primary prevention and secondary prevention. Seriously? Let me shout in my sternest voice. NOTHING can be done to prevent breast cancer a.n.d. no matter HOW EARLY the disease is caught, there is NO way to prevent a local, or for that matter, a distant recurrence. We can only employ risk reducing behaviors and then ..... roll those dice. The rest is a crap shoot. Or pulling the short straw. Or being in the ranks of The Lucky Ones. I "crapped out" primarily. I'm hoping secondarily that the next time I'm the shooter, I have better luck with the dice. Better still, maybe some hot guy with an accent can be the shooter and I'll just stand there and blow on the dice......(And yes, I know it's two dice and grammatically, I should say with the die..... but I have an issue with the letters d.i.e. For me, they are a bit, ummmm, dicey?)
How about getting the facts straight if the goal is awareness? Let's start by dispelling this great big myth. Let's banish the word "prevent" from the breast cancer vocabulary. Let's stop making breast cancer some sort of "sexy" disease. If you can't grasp those concepts, you are on the other side of the sand line on Booby Beach. You want to do something for awareness by throwing lots and lots of boobs on a Facebook page for awareness, CHANGE the conversation. Do something that may actually HELP one of us. Make people aware that women are dying and the numbers remain unchanged for decades. Make people aware that early detection is not a magic bullet for all. Make people aware we didn't cause our disease, we can't be cured and we can't do a damn thing to control what the disease may decide to do in the future. Reality doesn't sell. Sex sells. Scantily clad females with a shadow of a nipple peeking out of a lacy black bra sells. Scars scare. Scars are the reality. Scars definitely do NOT sell.
No one said it better than Osocio, a website that contains "the best non-profit advertising and marketing for social causes." Read the whole piece. It's written by a man. One of the fixers. The real fixers. I love how he notes this may be the ultimate example of an awareness effort using sex for attention. Then, read the two articles in Huffington Post. One is in the US edition. The other is in the UK edition. Read the comments. There is one by someone called Blond Ambition that sums things up pretty nicely. Her comment is in the US edition. The other comments are equally strong in their opinions. Lots of men. All disgusted. The good guys. The guys on our side of the beach. The ones who are genuine and real and who want to fix this.
And while I'm at it.... someone has to tell me WHY this boob stuff is okay for Facebook. Women without breast cancer flaunting their bodies for "the cause" in what amounts to soft porn stays up while something done by women with breast cancer is too risqué? This is a story for another day, but these are Survivors. Survivors who chose a method of healing through artistic impression. Having their bodies painted. Not to cover their scars but to feel better abut their bodies. To reclaim a sense of spirit and hope. The paintings tell their unique story. Their bodies are fully covered. They are cancer patients. No one... NO ONE.. made a dime from the venture.... and this is violates the terms and conditions of Facebook? The scantily clad suggestive pose with real breasts is okay. The beautifully painted body of a woman who suffered the physical and emotional pain of a mastectomy, who "parts" are the handiwork of a surgeon.... HER awareness, too suggestive?? Another story, another day.....
Go ahead and lecture me about how I shouldn't be pissed off. Go ahead and tell me I should just accept it because after all, isn't all awareness good and isn't anything that draws attention to "our cause" worthwhile? I called bullshit on that one. And nothing will ever change my mind. All awareness is NOT created equal and to be perfectly honest, there is NO NEED to raise awareness unless we are talking about doing so in an impoverished third world country where, yes, there is much work to do.
In this country, in Canada, in much of Western Europe, in Australia..... we are in great shape on the awareness front. We know what pink means. We know we need to get mammograms. We are aware of the DISEASE that is Breast Cancer. Wait! Apparently, there are still people who don't realize that every woman, by virtue of the the fact that she IS A WOMAN, is at risk of developing breast cancer??!? Well halle-friggen-lullia and thankfully we have some young enterprising French-men, self-annointed, self-appointed knights in shining armor who have swooped in on our behalf. The've come to rescue us. We are damsels in distress.
There's nothing sexier than a chivalrous man. (Is that even grammatically correct? Do I even care?) If that's at the core of a man and it's sincere, chivalry is okay by me. There are plenty of times I am beaten up by life and I'll gladly slip into the "weaker sex" role. Being weak makes me stronger. A man sees a problem and he might be inclined to feel the need to fix things. Including sometimes, things that are not broken.. or sometimes, they may intentionally break something so they have a reason to fix it.... or sometimes, there is just another motivation. Mostly, men want to fix things out of genuine concern. Most men. Not all, but definitely most. Some would rather leave us to our own resourcefulness and those guys are great, too. Some however, back me into a corner, take advantage of me or someone I care about and I can't help myself. Those people, not exclusive to men FOR SURE, but those blood suckers, male or female, just force me to summon my inner bra burning bitch, my rebellious raucous rowdy razor rip you to shreds tongue bitch.
Enter Boobstagram. An ingenious website (I really really REALLY wish there was a "universal sarcasm font") wherein women are instructed that "Showing your boobs on the web is good, showing them to your doctor is better." The website is filled with photographs of beautiful "boobs" in some exquisite lingerie. They have a Facebook page and a twitter feed. Breasts breasts everywhere. All beautiful breasts. The Facebook page looks a bit pornographic and I am FAR from a prude. Why, whatever do you mean Miss? I mean...... I'd like to morph into Diane Lane. I mean, this is a French website and I'm sayin' my mind is on that young, adorable, hot French guy in the movie Unfaithful..... I'm so there. In a New York minute. I'm not a prude. Yes, in that public restroom. Like I said, I'm NOT a prude. And, I'm a sucker for a man with a killer accent.
Ok.... So I'm not a prude. In my mind, I'm not a prude. In the real world, well, I'm not a kiss and tell kinda gal. Well then, Miss, Who Are You? I'm a woman who pulled the short straw by developing a disease. THAT disease. There is a line in the sand on Booby Beach. On one side are the women with breast cancer flanked by their fierce supporters and on the other side? Well, there are a mess of people capitalizing on the disease by turning everything into some sort of comic event. Who can come up with the most outrageous concept? Who can exploit women (many of whom are struggling already) in what may be the most egregious awareness campaign I've seen thus far?
I know many women whose bodies have been surgically altered, mutilated when you come right down to it, and despite the most masterful plastic surgeons, nothing is more perfect than having the parts we were born with. In tact. With real sensation, nerve endings sending signals to our brains. Not pulling. Not itching. I know those women. I am that woman. And, seeing my scars and dealing with the emotional fallout that can linger for years, the last thing I want to do is look at young, perfect, perky, scantily clad, suggestively posed "boob" shots.
Hell. I don't even think women with their own perfect body parts want to really scroll through pages and pages of that shit. Unless they are looking at the lingerie...... perhaps in search of the perfect undergarment...... perhaps in anticipation of running into some hot guy with an accent.... and they want to be perfectly accessorized should they find themselves in a situation where said hot guy is tugging at their blouse..... Obviously, since none of the lingerie is for sale, these photos are not for women. It's another one of those, slap a pink ribbon on it and call it awareness. Someone on twitter had some harsh things to say. I would have asked that particular twitter person to speak for herself but she is @SusanKomenGhost and she only speaks when she feels like making an appearance from the other side. I can't summon her at my will. This was her suggestion to her sister: Team up with these guys and call this campaign "Jack Off For The Cure." And yes, if you wondered, the title of this entry is a play on those words. I didn't want to be THAT crude right out of the gate.
To lend a bit of credibility, there is a "Why" page on this website. The "founders" introduce themselves and include the credentials that make them qualified to launch such a site and further explain how this site is the greatest way to raise awareness through fun rather than fear. Really? Has France ceded from this planet and moved to a new galaxy? OK... that's not fair either.....it's not France. Allow me to rephrase.... Have these two guys gone from human to alien and departed Planet Earth? What the HELL does that even mean? Fear to fun. There's nothing fun about breast cancer or screening for it either. I was at the screening game for 20 years and being told, "Don't get changed yet, there is dust on the film, we need more images" .... nothing but terror. Sheer terror. Most times it IS nothing but dust. Until one time, it's something like cancer.
On that same "why" page (which, by the way had me screaming, "yes, WHY?????") where we learn about their impeccable street cred, there are quite a few mentions of one of my other favorite words in the breast cancer arena. Sir, must you ask which word? Prevention. Not only does the word appear, there are explanations about primary prevention and secondary prevention. Seriously? Let me shout in my sternest voice. NOTHING can be done to prevent breast cancer a.n.d. no matter HOW EARLY the disease is caught, there is NO way to prevent a local, or for that matter, a distant recurrence. We can only employ risk reducing behaviors and then ..... roll those dice. The rest is a crap shoot. Or pulling the short straw. Or being in the ranks of The Lucky Ones. I "crapped out" primarily. I'm hoping secondarily that the next time I'm the shooter, I have better luck with the dice. Better still, maybe some hot guy with an accent can be the shooter and I'll just stand there and blow on the dice......(And yes, I know it's two dice and grammatically, I should say with the die..... but I have an issue with the letters d.i.e. For me, they are a bit, ummmm, dicey?)
How about getting the facts straight if the goal is awareness? Let's start by dispelling this great big myth. Let's banish the word "prevent" from the breast cancer vocabulary. Let's stop making breast cancer some sort of "sexy" disease. If you can't grasp those concepts, you are on the other side of the sand line on Booby Beach. You want to do something for awareness by throwing lots and lots of boobs on a Facebook page for awareness, CHANGE the conversation. Do something that may actually HELP one of us. Make people aware that women are dying and the numbers remain unchanged for decades. Make people aware that early detection is not a magic bullet for all. Make people aware we didn't cause our disease, we can't be cured and we can't do a damn thing to control what the disease may decide to do in the future. Reality doesn't sell. Sex sells. Scantily clad females with a shadow of a nipple peeking out of a lacy black bra sells. Scars scare. Scars are the reality. Scars definitely do NOT sell.
No one said it better than Osocio, a website that contains "the best non-profit advertising and marketing for social causes." Read the whole piece. It's written by a man. One of the fixers. The real fixers. I love how he notes this may be the ultimate example of an awareness effort using sex for attention. Then, read the two articles in Huffington Post. One is in the US edition. The other is in the UK edition. Read the comments. There is one by someone called Blond Ambition that sums things up pretty nicely. Her comment is in the US edition. The other comments are equally strong in their opinions. Lots of men. All disgusted. The good guys. The guys on our side of the beach. The ones who are genuine and real and who want to fix this.
And while I'm at it.... someone has to tell me WHY this boob stuff is okay for Facebook. Women without breast cancer flaunting their bodies for "the cause" in what amounts to soft porn stays up while something done by women with breast cancer is too risqué? This is a story for another day, but these are Survivors. Survivors who chose a method of healing through artistic impression. Having their bodies painted. Not to cover their scars but to feel better abut their bodies. To reclaim a sense of spirit and hope. The paintings tell their unique story. Their bodies are fully covered. They are cancer patients. No one... NO ONE.. made a dime from the venture.... and this is violates the terms and conditions of Facebook? The scantily clad suggestive pose with real breasts is okay. The beautifully painted body of a woman who suffered the physical and emotional pain of a mastectomy, who "parts" are the handiwork of a surgeon.... HER awareness, too suggestive?? Another story, another day.....
Tuesday, April 17, 2012
CHOOSING WISELY
Just about a month ago, I marked an important day. It was my I Am Five Years Post Chemo-versary. It was a big deal on March 20th and it's still a big deal. It's just not a big ENOUGH deal.
On March 28th, there was a meeting in San Diego. It was the 243rd meeting of the American Chemical Society. I'm going to go out on a limb here. I doubt this is an annual meeting. While Columbus may have set foot on these shores in 1492, we weren't on our own until 1776. That's less than 243 years ago. Ya get my line of thinking?
Here's my REAL line of thinking. In this meeting, research was presented and it was all about a new blood test that is twice as sensitive as present tests at picking up on tumor markers. According to the presentation and without getting all technical, this new test which is not yet available to the general population, can detect changes indicative of a recurrence up to one year sooner than the current blood tests. In other words, earlier detection. Not early detection. Earlier. And earlier is definitely better. Most of the time. Unless it's not.
The American Board of Internal Medicine has just launched a new website: ChoosingWisely.org. One of the purposes of the website is to identify certain tests and procedures that may be deemed unnecessary. Thus far, nine different medical subspecialties have weighed in with recommendations specific to their areas of medicine. Of particular interest to me? The recommendations of ASCO, The American Society of Clinical Oncology.
When I was having my No More Chemo party, I remember asking my oncologist, with some (okay, TREMENDOUS) trepidation, "What's the exit plan?" As was and still is the norm, my doctor and I have a wonderful rapport and an all over the place type of communication that works for both of us. We can both be asking questions at the same time, he can be answering one question while I'm three questions ahead, we can finish each other's thoughts (sometimes). I still remember that visit. The visit that would have taken place precisely five years ago. The visit, that upon exiting his office, would thrust me into the next leg of the cancer journey....... the portion that I have come to refer to as "Flying Without A Net."
I remember saying, "I have no more breast tissue, so there are no more mammograms. How do we make sure I am okay?" And then I remember his very philosophical reply, "AnneMarie, you are too good a person. Nothing is going to happen to you." Thanks, doc, but I was really hoping for something a tad more scientific, something concrete, something to enable me to put my head on the pillow at night. In our typical method of communication, he did answer me. "IF something happens, it's not going to be a good situation." I knew what he meant. If something happened (happens), it will not be a local recurrence. I will go straight to the head of the cancer line. Stage 4. Distant mets. Terminal.
And then he explained how this would work. "We will do bloodwork to make sure the protein markers are not elevated." Last month, when I was at a seminar, those tests were discussed and new recommendations were being made. The doctors were being told these tests cause too much stress. Included in those "tests" is the blood test that is the sole method by which I am presently monitored. Pause. Repeat for full effect. The SOLE METHOD of monitoring available to me, a cancer patient. And Choosing Wisely, the ASCO portion of the program, says this test is not a wise choice.
Their reasons are valid. I think I read somewhere that even if the number is elevated, there is no scientific evidence that early detection via elevated tumor markers will change the outcome. The "outcome" happens to be My Life, just saying' AND according to the first gang of scientists, five years isn't the magic number anyway. In their abstract, it is noted that one in five breast cancer "survivors" will have a recurrence within TEN years of completion of treatment.
My scheduled oncology follow up is next week. It's on the exact date that I received The Letter from the radiologist wherein he noted "a density was seen which could simply represent a cyst." It was, in fact, invasive lobular breast cancer although it would be three full months before that cyst was identified as cancer.
I'm five years out. Only halfway to the real magic number if that other report holds any weight whatsoever. And, a few hundred thousand doctors have collaborated about this blood test.... the only follow up available to the breastless, and they say it's pretty much useless.
I'm officially in pre-doctor visit anxiety mode. Not only do I have the usual angst, now I have a million more questions. Maybe it's time to stop reading all the research. Maybe this empowered patient thing isn't all it's cracked up to be. Maybe my dad was right when he told me I was supposed to be ignorant and happy. I think the next couple of weeks are going to feel like years. I think the tequila bottle is going to be in a readily available spot in my freezer. Better off keeping it cold so I can simply throw a straw in the bottle. Rx Sip as needed until anxiety is controlled or until unconscious.
On March 28th, there was a meeting in San Diego. It was the 243rd meeting of the American Chemical Society. I'm going to go out on a limb here. I doubt this is an annual meeting. While Columbus may have set foot on these shores in 1492, we weren't on our own until 1776. That's less than 243 years ago. Ya get my line of thinking?
Here's my REAL line of thinking. In this meeting, research was presented and it was all about a new blood test that is twice as sensitive as present tests at picking up on tumor markers. According to the presentation and without getting all technical, this new test which is not yet available to the general population, can detect changes indicative of a recurrence up to one year sooner than the current blood tests. In other words, earlier detection. Not early detection. Earlier. And earlier is definitely better. Most of the time. Unless it's not.
The American Board of Internal Medicine has just launched a new website: ChoosingWisely.org. One of the purposes of the website is to identify certain tests and procedures that may be deemed unnecessary. Thus far, nine different medical subspecialties have weighed in with recommendations specific to their areas of medicine. Of particular interest to me? The recommendations of ASCO, The American Society of Clinical Oncology.
When I was having my No More Chemo party, I remember asking my oncologist, with some (okay, TREMENDOUS) trepidation, "What's the exit plan?" As was and still is the norm, my doctor and I have a wonderful rapport and an all over the place type of communication that works for both of us. We can both be asking questions at the same time, he can be answering one question while I'm three questions ahead, we can finish each other's thoughts (sometimes). I still remember that visit. The visit that would have taken place precisely five years ago. The visit, that upon exiting his office, would thrust me into the next leg of the cancer journey....... the portion that I have come to refer to as "Flying Without A Net."
I remember saying, "I have no more breast tissue, so there are no more mammograms. How do we make sure I am okay?" And then I remember his very philosophical reply, "AnneMarie, you are too good a person. Nothing is going to happen to you." Thanks, doc, but I was really hoping for something a tad more scientific, something concrete, something to enable me to put my head on the pillow at night. In our typical method of communication, he did answer me. "IF something happens, it's not going to be a good situation." I knew what he meant. If something happened (happens), it will not be a local recurrence. I will go straight to the head of the cancer line. Stage 4. Distant mets. Terminal.
And then he explained how this would work. "We will do bloodwork to make sure the protein markers are not elevated." Last month, when I was at a seminar, those tests were discussed and new recommendations were being made. The doctors were being told these tests cause too much stress. Included in those "tests" is the blood test that is the sole method by which I am presently monitored. Pause. Repeat for full effect. The SOLE METHOD of monitoring available to me, a cancer patient. And Choosing Wisely, the ASCO portion of the program, says this test is not a wise choice.
Their reasons are valid. I think I read somewhere that even if the number is elevated, there is no scientific evidence that early detection via elevated tumor markers will change the outcome. The "outcome" happens to be My Life, just saying' AND according to the first gang of scientists, five years isn't the magic number anyway. In their abstract, it is noted that one in five breast cancer "survivors" will have a recurrence within TEN years of completion of treatment.
My scheduled oncology follow up is next week. It's on the exact date that I received The Letter from the radiologist wherein he noted "a density was seen which could simply represent a cyst." It was, in fact, invasive lobular breast cancer although it would be three full months before that cyst was identified as cancer.
I'm five years out. Only halfway to the real magic number if that other report holds any weight whatsoever. And, a few hundred thousand doctors have collaborated about this blood test.... the only follow up available to the breastless, and they say it's pretty much useless.
I'm officially in pre-doctor visit anxiety mode. Not only do I have the usual angst, now I have a million more questions. Maybe it's time to stop reading all the research. Maybe this empowered patient thing isn't all it's cracked up to be. Maybe my dad was right when he told me I was supposed to be ignorant and happy. I think the next couple of weeks are going to feel like years. I think the tequila bottle is going to be in a readily available spot in my freezer. Better off keeping it cold so I can simply throw a straw in the bottle. Rx Sip as needed until anxiety is controlled or until unconscious.
Monday, April 16, 2012
THE SKINNY ON SOY
I can't take any credit for the content in today's blog. What follows is information directly from the Dr. Susan Love Research Foundation. It seems we are in a never ending maze of What's Great Today.....Not So Much Tomorrow.
Soy is a Hot Topic in the breast cancer arena. I know I was told to limit my soy intake and that my "high risk" daughter (who has a bag of soy crisps in her hand every time I turn around) was given the same advice. We need someone to decipher the headlines and the sound bites. Thankfully, I can always count on Dr. Love to sort through the information and explain it in ways that are easily understood.
Take it away, Dr. Love........
The story of soy and breast cancer is an excellent example of the research process. Pieces of information come in slowly, some studies contradict others, and then, overtime, as we learn more, we gain a clearer picture of the answer. But until that occurs, confusion and worry are common, as the subject in question—in this case soy—pops back and forth between the "good" category and the "bad."
Initially, soy was thought of as a wonder food. This happened because researchers looking for an explanation as to why women living in Asia had lower breast cancer rates than women living in the U.S. found that Asian women ate more soy products. Virtually overnight, soy became the best thing in breast cancer prevention. Tofu and soy milk were all the rage. All kinds of processed foods began to contain soy, and soy powders and supplements could be found everywhere. There was no question: Soy was GOOD!
But as scientists began to conduct laboratory studies to look for reasons why soy might decrease breast cancer risk, they found that when genistein, which is a type of isoflavone, was added to breast cancer cells they grew faster. Soon after, it was suggested that women who were taking tamoxifen and other anti-estrogens should avoid soy because soy acted like a weak estrogen, and could potentially counteract the tamoxifen or increase a woman's risk of recurrence. Suddenly, soy was now BAD!
That's why it was big news when a study conducted in Shanghai, China, published in December 2009 in the Journal of the American Medical Association found that women with breast cancer who ate soy had a decreased risk of having a cancer recurrence or dying of the disease.
The study was based on data from the Shanghai Breast Cancer Survival Study, which includes 5024 female breast cancer survivors. After following the women for four years, the researchers found that the higher a woman's soy protein or soy isoflavone intake, the lower her risk of having a breast cancer recurrence or dying from the disease. This was true regardless of whether women had ER-positive or ER-negative tumors, whether or not they were taking tamoxifen, and whether they were pre- or postmenopausal. (Although the researchers didn't look at this question, the findings would be expected to be the same for women on aromatase inhibitors.)
The study's authors pointed out that there are differences in the types of soy eaten by women in Asia and women in the U.S. In Asia, women are more likely to eat whole soy foods, like cooked soybeans, edamame, tofu, miso, and soy milk, whereas in the U.S. women tend to eat more processed foods that contain soy—and at much lower levels.
This is additional evidence that women in the U.S. with breast cancer can feel even better about adding whole soy foods to their diet. To be sure, we need more studies in women to confirm this finding. But a study of this size that has been so well done and that shows no negative effects clearly suggests that eating soy will not increase your risk of a recurrence and that, in fact, it might even reduce it!
What about soy letcithin? It is extracted from soybeans, but it is not part of the soy protein. As a result, it does not contain any isoflavones, which are the part of the soybean that acts as an estrogen. It is primarily used as an emulsifier to hold ingredients together. So, there is also no reason to worry that you are getting lots of isoflavones in your diet each time you chew gum or take a supplement.
The soy story also shows us why we can't over simplify the science. Soy is not a phytoestrogen but rather a "phytoSERM," more like tamoxifen than estrogen. It also reinforces that we cannot automatically extrapolate from studies on cells and rats to women. We need to do studies on women so that we know what happens in women's bodies.
Initially, soy was thought of as a wonder food. This happened because researchers looking for an explanation as to why women living in Asia had lower breast cancer rates than women living in the U.S. found that Asian women ate more soy products. Virtually overnight, soy became the best thing in breast cancer prevention. Tofu and soy milk were all the rage. All kinds of processed foods began to contain soy, and soy powders and supplements could be found everywhere. There was no question: Soy was GOOD!
But as scientists began to conduct laboratory studies to look for reasons why soy might decrease breast cancer risk, they found that when genistein, which is a type of isoflavone, was added to breast cancer cells they grew faster. Soon after, it was suggested that women who were taking tamoxifen and other anti-estrogens should avoid soy because soy acted like a weak estrogen, and could potentially counteract the tamoxifen or increase a woman's risk of recurrence. Suddenly, soy was now BAD!
That's why it was big news when a study conducted in Shanghai, China, published in December 2009 in the Journal of the American Medical Association found that women with breast cancer who ate soy had a decreased risk of having a cancer recurrence or dying of the disease.
The study was based on data from the Shanghai Breast Cancer Survival Study, which includes 5024 female breast cancer survivors. After following the women for four years, the researchers found that the higher a woman's soy protein or soy isoflavone intake, the lower her risk of having a breast cancer recurrence or dying from the disease. This was true regardless of whether women had ER-positive or ER-negative tumors, whether or not they were taking tamoxifen, and whether they were pre- or postmenopausal. (Although the researchers didn't look at this question, the findings would be expected to be the same for women on aromatase inhibitors.)
The study's authors pointed out that there are differences in the types of soy eaten by women in Asia and women in the U.S. In Asia, women are more likely to eat whole soy foods, like cooked soybeans, edamame, tofu, miso, and soy milk, whereas in the U.S. women tend to eat more processed foods that contain soy—and at much lower levels.
This is additional evidence that women in the U.S. with breast cancer can feel even better about adding whole soy foods to their diet. To be sure, we need more studies in women to confirm this finding. But a study of this size that has been so well done and that shows no negative effects clearly suggests that eating soy will not increase your risk of a recurrence and that, in fact, it might even reduce it!
What about soy letcithin? It is extracted from soybeans, but it is not part of the soy protein. As a result, it does not contain any isoflavones, which are the part of the soybean that acts as an estrogen. It is primarily used as an emulsifier to hold ingredients together. So, there is also no reason to worry that you are getting lots of isoflavones in your diet each time you chew gum or take a supplement.
The soy story also shows us why we can't over simplify the science. Soy is not a phytoestrogen but rather a "phytoSERM," more like tamoxifen than estrogen. It also reinforces that we cannot automatically extrapolate from studies on cells and rats to women. We need to do studies on women so that we know what happens in women's bodies.
This post is courtesy of the Dr. Susan Love Research Foundation, dedicated to eradicating breast cancer and improving the quality of women's health through innovative research, education and advocacy. To support this important cause and donate, visit www.dslrf.org.
In keeping with staying on top of some of the most pertinent issues, Army of Women is helping to fill this study specifically related to soy and how it may affect breast density (another hot news topic). If you fit or might know someone, please consider joining the study!
Dear AnneMarie,Studies have shown that eating soy in the diet reduces breast cancer risk but we don't know why. This study is looking into whether it does this by decreasing breast density. A research team at the University of Southern California is looking for women with a family history of breast cancer AND breast cancer survivors to participate in a study to see if taking a soy supplement (in tablet form) for one year can reduce breast density or slow or reduce cell growth in the breast. Study participants cannot be currently receiving cancer treatment.Please read on to learn more about what's involved and who can participate. If this study isn't right for you, please pass it on! Help us reach as many eligible women as possible! | |
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Friday, April 13, 2012
VOTING TIME
Today, I am "rounding" on the floor at Memorial Sloan Kettering. I felt I needed to give back to the hospital... really, it's so much more than a hospital.... it's an entire community..... that took such great care of me since April of 2006 when I first hobbled through the doors with my films in hand, on crutches. It was an odd twist of fate. I had elective surgery on my foot to have a neuroma removed. The surgery was in the same hospital where I sat with my son last week.
My foot surgery was scheduled weeks before I descended into imaging hell. I spent an entire week in hell. I was gearing up for my foot surgery. What cold possibly be of more importance than fixing this issue with my foot? After all, it was messing up my ability to wear really, really, REALLY great shoes. How could I POSSIBLY know that there would be A Letter in my future when I was setting up this surgery? A Letter that began the domino effect so eloquently penned by Nancy in her blog at Nancy's Point.....
I'm sure I still have it in my "This Sucked" folder. Come back for additional images of two areas of concern: The Density (not really an area of concern but just happens to be what WAS cancer) and The Calcifications (which really were an area of concern that appeared highly suspicious and ultimately, WERE nothing). The lesson? Don't count on anything until all the votes are in.
And right now, we need to be voting. There are a bunch of things going and I would like to ask everyone to take a couple of moments to save these links and VOTE.
First.... METAvivor. Pink Well is presenting a sizable donation to the organization with the most votes. No area of breast cancer is in more need of funding than research of metastatic disease.
Second.... the "Webby" awards. Is it me or are there more awards out there than anyone can possibly keep up with.... No matter. I feel strongly about a couple of the award categories so I'm asking for your help. To begin, the gang at I Had Cancer is nominated in two categories. Please vote in both. They are nominated for Social Media Website and Community Website. Click both links. Vote for them in both categories.
Also nominated for a "Webby" is Memorial Sloan Kettering. The press release from the hospital says it all. Their nomination is in the Health Website category and is the result of lots of hard work over the past several months by the team at the hospital to redesign the website. I hope their efforts will be rewarded. Poke around the website. Take it for a test drive. And then, submit a vote on their behalf. Please. Pretty please.... sugar on top??
The voting continues for another two weeks. It will give me something to keep my mind occupied. April is filled with Those Dates. April is also my oncology follow up. April was not my favorite month. If I see things happen for METAvivor, I Had Cancer and Memorial Sloan Kettering, I may just change my mind about April. It's in your hands.
My foot surgery was scheduled weeks before I descended into imaging hell. I spent an entire week in hell. I was gearing up for my foot surgery. What cold possibly be of more importance than fixing this issue with my foot? After all, it was messing up my ability to wear really, really, REALLY great shoes. How could I POSSIBLY know that there would be A Letter in my future when I was setting up this surgery? A Letter that began the domino effect so eloquently penned by Nancy in her blog at Nancy's Point.....
I'm sure I still have it in my "This Sucked" folder. Come back for additional images of two areas of concern: The Density (not really an area of concern but just happens to be what WAS cancer) and The Calcifications (which really were an area of concern that appeared highly suspicious and ultimately, WERE nothing). The lesson? Don't count on anything until all the votes are in.
And right now, we need to be voting. There are a bunch of things going and I would like to ask everyone to take a couple of moments to save these links and VOTE.
First.... METAvivor. Pink Well is presenting a sizable donation to the organization with the most votes. No area of breast cancer is in more need of funding than research of metastatic disease.
Second.... the "Webby" awards. Is it me or are there more awards out there than anyone can possibly keep up with.... No matter. I feel strongly about a couple of the award categories so I'm asking for your help. To begin, the gang at I Had Cancer is nominated in two categories. Please vote in both. They are nominated for Social Media Website and Community Website. Click both links. Vote for them in both categories.
Also nominated for a "Webby" is Memorial Sloan Kettering. The press release from the hospital says it all. Their nomination is in the Health Website category and is the result of lots of hard work over the past several months by the team at the hospital to redesign the website. I hope their efforts will be rewarded. Poke around the website. Take it for a test drive. And then, submit a vote on their behalf. Please. Pretty please.... sugar on top??
The voting continues for another two weeks. It will give me something to keep my mind occupied. April is filled with Those Dates. April is also my oncology follow up. April was not my favorite month. If I see things happen for METAvivor, I Had Cancer and Memorial Sloan Kettering, I may just change my mind about April. It's in your hands.
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