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This is the best “Get a fucking clue, it’s FEDERAL LAW that you provide coverage” response EVERRRRRRRRRR!

BRCAing Bad: how previving cancer is nothing like making meth on a TV show

other than calling me (temporarily) deformed, this is pretty much amazing – and the best fuck you to an insurance company ever.



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I cut and pasted this article from NPR.  It doesn’t have anything to do with BRCA1, BRCA2, prophylactic mastectomies or DIEP flap reconstruction.  But I thought it relevant and a good thing to repost.  When my sister was diagnosed, she was 31.  She’d never had a mammogram or breast MRI.  She had stage 1 breast cancer, but her form of breast cancer was fast growing.  We are all lucky that she just happened to roll over and feel that awkward, uncomfortable lump one night and decided to have it looked at.  That lump changed all of our lives, but mostly hers.  To my sister, Alyssa, I LOVE YOU and I am so proud of your ability and willingness to fight!:


My sister, Alyssa, with one of my daughters (Liv)

My sister, Alyssa, with one of my daughters (Liv)

Women should get screened for breast cancer in their 40s, a study concludes, because they face a greater risk of death when cancers aren’t found early.

Women who were diagnosed with cancer in their 40s and died of the disease were more likely to have never had a mammogram than were older women, according to the study.

Seventy percent of the women diagnosed with cancer in their 40s who later died hadn’t had a mammogram, compared to 50 percent of women in their 60s. Half of the cancer deaths in the study were in women who had been diagnosed before age 50.

“Breast cancer is primarily a disease of older women, but younger women tend to have faster-growing cancer,” says , a professor of women’s health and radiology at the Washington University School of Medicine in St. Louis. She wasn’t involved in the study.

“There are people who feel that screening doesn’t reduce death rates, that it’s all in treatment,” Monsees tells Shots. “This study corroborates prior studies that screening mammograms save lives.”

Breast cancer is in younger women, and is most often diagnosed when women are over 60. But in this study, the death rate for women diagnosed in their 40s was almost twice that of women diagnosed in their 70s.

The study is sure to add to the ongoing controversy over when and how often women should get mammograms. It backs up the American Cancer Society’s that women get mammograms every year starting at age 40.

But in 2009, the U.S. Preventive Services Task Force, a federally funded independent panel, that, in general, women should wait until age 50 to start getting screening mammograms, and then get screened every two years up till age 75.

That recommendation factored in the fact that younger women are more likely to have false positive mammograms, which can lead to unnecessary biopsies and anxiety.

“Overdiagnosis has been completely exaggerated,” says , director of breast imaging at Massachusetts General Hospital and an author of the paper. “Well, calling people back for additional screening causes anxiety, I understand that. But it absolutely saves lives. You reduce the death rate by 30, 40 percent if you start screening at age 40.”

This study looked at women in the Partners HealthCare system in Boston who were diagnosed with invasive breast cancer from 1990 to 1999. The researchers then checked the women’s medical records to see if and when they’d had mammograms.

It’s a form of study called a “failure analysis,” a what-went-wrong approach similar to that used in investigating airplane crashes. , an emeritus professor at Brown University’s Alpert Medical School and one of the study authors, tells Shots that he thinks it better reflects the effect of screening than do population-based studies, because the health system records show which women actually got mammograms, rather than say they did.

Of the 7,301 women in the study, 609 had died of breast cancer by 2007. Almost three-quarters of the women who died hadn’t had a mammogram in the two years before the cancer was found.

Overall, 80 percent of the women were getting mammograms at least every two years, well above the . Some of them still got breast cancer, but, overall, the death rates were higher in women whose tumors weren’t found until they could be felt.

“While the analysis reveals that regular screening will not prevent all breast cancer deaths,” Robert Smith, director of screening for the American Cancer Society, told Shots in an email. “It also reveals that even with improvements in treatment there is still a significant advantage of detecting breast cancer with mammography before symptoms develop.”

This new study also found no benefit in mammograms for women over age 69 when it came to reducing cancer death risk.

The study was online in the journal Cancer.

Angelina Jolie, BRCA, and Prevention

While lying in bed last night at about 11 p.m., I was thumbing through the NY Times trying to find something to read until I was sleepy.  Instead, I found something that had me wide awake and thankful. 

As the world probably already knows, the siren Angelina Jolie publicly announced her prophylactic mastectomy and reconstruction.  She is BRCA1 positive.  I commend her for putting herself out there as the well known, stunning face of this proactive decision.  While I blogged about my process and progress, I don’t have a fraction of the draw or attention that comes with being the smoking hot Angelina Jolie.  So, in case there are any of you women out there hemming and hawing about whether or not you’ll still feel and be viewed as sexy after this series of procedures – you will be. 

Don’t you want to be as smart, sexy, revered, HEALTHY, ALIVE and PRESENT FOR YOUR LOVED ONES as she is? 

I absolutely had to reblog this post.

The World of Special Olympics

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child…

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Today is National Breast Reconstruction Awareness Day.  There is a lot I could say about today.  In the interest of brevity:

I am a 31 year old mother of 2.  I am BRCA1 positive.


Bilateral skin sparing mastectomy, immediately followed by DIEP flap reconstruction.


Nipple reconstruction and abdominal scar revision.


First round of areolar tattooing.

There are many options available should you choose to have reconstruction after mastectomy.  I chose DIEP flap reconstruction; this is my result.  I hope that this helps you decide, regardless of what your decision is.

DIEP Flap reconstruction


I meant to post an update before today, but here it is…TODAY! I’m currently sitting in the waiting room getting ready to have my areolar tattoos. Dr. Louie gave me a prescription for topical lidocaine but I didn’t use it because I don’t have any sensation in these Noobs. So, here we go! As always, I’ll post some photos so you can all see how things went.


I will post a full update tomorrow. Just wanted to say that I feel good, have very little to no pain, and I have decorated my Noob/Newpple home care kit accordingly.

In case you missed it, Spring is in the air.  For most, this is a blessing and welcome sight.  For me, right now, this is a hazard and a potential for some serious pain.  I went for my daily walk today and decided to divert my route to the Arboretum.  It was only drizzling a bit outside and I thought that the trees would provide sufficient cover and scenery for me to endure and enjoy it.  What I forgot was that I am allergic to almost every pollen and I cannot take antihistamines right now.  I reached the top of the first hill in the arboretum and was greeted by this:

04/11/12 - Arboretum

Beautiful sight, full on pain potential.  I have no idea how long it will take my sternum and ribs to feel like they are completely healed, but for now it is still painful (not just uncomfortable) to sneeze or have a clearing cough.  Despite the hazard, I endured the risky business of the arboretum and very much enjoyed the sights.  I came home feeling invigorated from a brisk walk, albeit a bit wheezy, trying not to be sneezey, and itchy.  I had a few smallish sneezes, which I tried to smother before they reached full blow out and agony but was unsuccessful.  All in all, I walked for 3.2 miles and got some good exercise before it started raining hard.

I enjoy being able to walk for exercise.  It was really challenging to be able to only go a block or two just after my surgery.  I felt like the less mobile I was, the worst I felt.  I also felt like my pain increased ten fold if I just laid around most of the day.  Fresh air is always welcome, as is the outdoors, to get my blood pumping.  But I cannot do anything more than walk at this point.  Even after simply walking 3 miles, I worry about my noobs and healing blood vessels.  I worry mostly because when my heart rate picks up, I have this unusual pulsating feeling in my chest and noobs, which doesn’t go away for hours on end.  It’s something that I need to throw in my follow up file for my visit with Dr. Louie.  I think it may be a confluence of healing and change in my body at once, but I am still a bit disconcerted everyday when my body goes through this little pitter patter ritual.

Before I leave you with the daily dose, I wanted to note that I slept off of my crazy contour pillow last night.  It was semi-successful in that I didn’t awake this morning with new complaints, but I didn’t sleep through the night.  I kept trying to roll over in my sleep, which I cannot do because even attempting to roll over in my sleep causes enough pain to wake me.  So, there were a lot of roll over attempts, followed by waking up, followed by trying to find a comfortable position, followed by rinse, later and repeating.  I still curl my legs up off to the side because being stretched fully out and flat on my back is slightly uncomfortable for my abdominal incision.  I think that before this coming Monday, I should be able to lay flat on the bed.  HOPE HOPE HOPE.

Peligroso, Cuidado!  Exit if you don’t dare endure the daily dose…


04/11/12 - Frontal

04/11/12 - NOOBS

04/11/12 - Abdominal incision

04/11/12 - Left

04/11/12 - Right





I downloaded this free app from iTunes to track how far (and fast) I went on my walk today.  Since the weather was unusually pleasant, again, today I was able to stay out and walk just about 3.5 miles (at a sloth’s pace).  Technology is amazing (and I’m not saying that just because I’m sitting here at almost 4 weeks of recovery from my PBM and DIEP flap reconstruction)!

04/10/12 Pedometer App

While my day was pretty uneventful and simple (much like the past week), this evening has been a different story.  Not long after I came home from my walk and settled down, I started having a pulsing sensation in my left “noob” (f/k/a “flap”).  It has been coming and going, but with it my swelling has once again gone up.  I’m really surprised at how much my activity level is still affecting my swelling.  I am almost at the 4 week mark, which is when, I’ve read that, many other women have been released to start physical therapy.  I keep wondering if I am going to have even more problems with swelling on my left side when I am in PT and actually putting my left arm through so much more use and activity.  I will have a chance to speak with my plastic surgeon about all of this on Monday, but it is nagging at me and so uncomfortable.  I am so swollen on the left side that my surgical bra will not stay closed (I wear it open in a “V” shape for more room and so as not to constrict my healing vessels).

I am also worried that this continued swelling will not completely resolve, and I will end up with two noobs of very different sizes.  If I do end up with two very different sized noobs, then I may reconsider my previous “no thank you” to the step 2 liposuction/evening out of the noobs.  The swelling on my left hip/side is less of a concern to me, but maybe I should be equally concerned about it.  I was and am hopeful that my swelling will resolve before I have to make that decision, but I’ve read on a lot of other women’s blogs that their swelling never resolved and they had liposuction on one side to even things out.  That’s another surgery, hospital stay, and at least 2 weeks of recovery not including nipple reconstruction.

This process is not for the faint of heart.  Daily photos below.  I think it’s been hard to effectively show when my left side is more swollen than usual.  I tried taking an aerial photo today so you can see the difference all around, if you’re interested.



04/10/12 - Flaps

04/10/12 - "Noobs!"

The view from above.

04/10/12 - Right side, well behaved. Thank you, right side.

04/10/12 - Left side that will seemingly not stop swelling.

04/10/12 - The stitch that will forever be.

04/10/12 - Abdominal incision