cancer harbors: “because living is so much more than surviving…”

This is my friend’s business. I am so proud of Alene! This is my humble opinion a very worth while endeavor

Posted in breast cancer | Tagged , | Leave a comment

circle of cancer

  The funny thing about living with breast cancer no matter what stage you are in the disease is the circlular aspect of it. As in it circles back to you. It’s like a not so secret society devoid of a secret handshake.

I think I have written before about how once you’ve been diagnosed you can almost sense other breast cancer people out there even in the supermarket or walking across a parking lot. We seem to see and seek each other out.

I was looking at the calendar the other day and I know it’s time to start making my new round of appointments that are constant even after you have graduated from treatment like surgery, chemo, and radiation. I mean technically I’m still active treatment because I’m on Tamoxifen for up to 10 years, but because I have been lucky enough so far to NOT have to revisit radiation or explore chemo I often just feel “normal” again and my inner teenager rebels again making the next round of appointments.  Who wants to go to the doctor when they feel fine?

So I have been avoiding the whole appointment thing and freaking myself out with self breast exams. Why? Well because the breast (left)  which  was  treated to seven weeks of radiation feels completely different from the other breast (right). The left breast feels almost fake – dense and heavy and lumpy bumpy. That is NOT as in so NOT saying another lump, it’s just the way a breast feels after radiation. But when you are doing the whole self breast exam….it’s easy to forget and well it’s freaky. 

Yeah, so I gave myself some bruising. Dumb ass I said to myself.

Anyway, breast cancer has been on my mind because well if I make it to June 1st unscathed, I am FIVE years cancer free! My next proverbial brass ring and I want that sucker, darn it.

This past week has been hot flash hell and a week of aching throbbing joints. (Thanks again Tamoxifen.)

This afternoon a message comes through Facebook messenger. A woman I don’t know looking for another friend of mine to ask questions about…breast cancer. So I said well I will be happy to connect you both, but I am a survivor too.

So she and I settled into an actual phone conversation. She and I have this six degrees of separation. It’s crazy the way life works.

As I listened I realized a lot of what I was hearing was me five years ago. Seeking out survivors and those who understand the crazy maze of breast cancer. Because when you are the heat of the battle, some days you feel like you will lose your tiny little mind.

And the six degrees of seperation is insane. Here we are, never having met or crossed paths with so many in common. And once again, breast cancer brings it full circle, closes the circle.

It’s a small world after all. Full of breast cancer circles, apparently.

Not that I am complaining because breast cancer has brought some really fabulous people into my life.

Thanks for stopping by. 

Posted in breast cancer | Tagged , , | 1 Comment

be yourself

  Hold onto your hats a blog post not purely or solely about breast cancer coming your way.

Yes, really. And yes it’s sort of is about breast cancer, but it’s more about women in general.

First I have to credit Cathy Chester writer, blogger, new friend, inspirational fun person. Her blog is An Empowered Spirit and you should really check it out.

She had shared the above image on Facebook from GrowingBolder.

Wow when I am 70 I hope I look that good.

Lauren Hutton is and always has been a beautiful woman. One of the most beautiful things about her is she is always herself. We can all learn from that.

I know a lot of women post breast cancer who have embarked on plastic surgery and other appearance related procedures like tattoos . The thing about breast cancer that a lot of people never understand is how it does strike the core of our very femininity. Truly, I am not judging those of the pink sisterhood so to speak who choose this path. I just chose not to.

I chose not to go buy a new pair of breasts after my surgery and did not get a survivor’s tattoo (as in not the ones that look like nipples if you don’t have a nipple sparing surgery.) I live a slightly lop-sided existence basically.  I will be honest and some days I have a lot of issues with that. But some days I just have issues with being 51 and not in my 20s or 30s anymore.

Aging is not easy every day. Some days I look in the mirror and I see my father and grandmother staring back at me and it terrifies me. But then I see women of my own age group, younger, and older who go to ridiculous measures to remain societally and media worthy perfect. I feel sorry for them sometimes because in a lot of cases they look somewhat ridiculous.

I’m not saying that a woman should not take care of herself and I’m not really judging the lengths that some women go to take care of themselves. What I am saying is while we are taking all of that into consideration we should also take into consideration aging gracefully or should I say aging naturally.

Society and media put a lot of pressure on women. And I sort of have always chafed against some of that pressure.  That pressure leaves you feeling somewhat inadequate a lot of the time, and for what? You have to remember a lot of those faces staring back at you from women’s magazines might be dressed up like grownups but they’re actually teenagers.  I might as well face it my ass is not gonna look like a teenage ass ever again.  Sorry to be crass, but it’s the truth.

This is where does become about breast cancer again. I think anyone who has the disease now or has been treated for the disease will agree of how it just basically changes your outlook on everything. It also can make you feel insecure at times and just mentally exhausted. We have put our bodies through a lot to stay here on this planet and everything we know pre-cancer is not what we know now

If I’m honest with myself there are other days when I look in the mirror that I don’t see a relative staring back at me, I just don’t feel pretty or attractive. All I see are the little wrinkles here and there, the annoying way the gray and white hair threading through my once rich brown hair is a slightly different texture, and oh yes those lop-sided breasts. Sometimes it quite literally brings me to tears and then I feel so selfish for feeling that way.

My skin is dry a lot of the time now. But then I remember I don’t have any estrogen left in my body between tamoxifen and the hysterectomy.

All of these things occasionally create the perfect storm of a pity party of one. And then I see things like the Lauren Hutton quote that snap it back into perspective.

I am alive and when you get down to it? I don’t want to be 25 again. It was enough pressure then and I am sure it’s worse now.  Like it or not we age – it is quite literally a fact of life.

It’s all about attitude to an extent. Am I the prettiest? No but I never was. Am I the thinnest? No and again I never was – well I was for a brief period of time and well, I look like Skeletor.  It was distinctly unhealthy.

Appearance  in general has always been a battle for me because of my mother unfortunately.  I was raised on “are you going to wear that?” And “are you going to eat that?” And various and sundry comments worked into every conversation since I hit puberty and continuing today about appearance, and women who “let themselves go” and so on.  

I love my mother, don’t misunderstand me.  But I do wish there had been fewer flowing streams of consciousness from her over the years of how women look, and what they look like, and how much they weigh. Thanks to all of that I have had brief periods of time in my life where I have actually been able to look in the mirror and not be super judgmental of myself.  That has always been hard for me and breast cancer made it even harder.

Aging is a weird phenomenon. You go from being the youngest in the room to starting to be the oldest in the room. You wake up and you have the “holy crap when did that happen???”  moments.

At the end of the day I have this huge thing in my corner that I didn’t have when I was half my age: I’m actually happy.  A lot of women of any age can’t say that.

So ladies? Be yourselves.  Sometimes that takes a little doing to figure out and I consider it a work in progress for me personally, but I think it’s better and more healthy than the alternative.

Carry on!

Posted in breast cancer | Tagged , , , | 1 Comment

sometimes big business can pleasantly surprise you

A logo sign outside of a facility occupied by Aetna Inc. in Blue Bell, Pennsylvania.

A logo sign outside of a facility occupied by Aetna Inc. in Blue Bell, Pennsylvania.

The other day I wrote about my latest go round with my health insurance company, Aetna.

In all fairness I must do a brief update.

So after my last post I was frustrated enough that I Googled and Googled until I found the email address to Karen Lynch and Mark Bertolini .

Both received my e-mails, and to my great surprise Karen Lynch personally responded. I have to be honest and never thought in a million months of Sundays that a president of a giant corporation would respond to me one self-insured person with one single policy. I thought maybe a secretary or executive assistant would reply.

But she did personally and has stayed in communication with me.

I found issues with their new website along with my policy problems. I sent them screen shots of the website issues and they have actually been working with me to fix everything.

That is a vast improvement over last year.

Still waiting for all issue to be resolved but I feel like someone actually cares.

 

 

Posted in breast cancer, health insurance | Tagged | Leave a comment

new year, same aetna

A logo sign outside of a facility occupied by Aetna Inc. in Blue Bell, Pennsylvania.

A logo sign outside of a facility occupied by Aetna Inc. in Blue Bell, Pennsylvania.

UPDATE 1/42016:

NEW YEAR NEW SUCKITUDE. Spent over 30 minutes on muzak hold to get the Philippines where they know nothing, can’t help you and can only read a script. They land me another 30 minutes on hold until I get a stateside employee who tells me…wait for it…my policy was CANCELLED due to lack of payment. How is that even possible when you took money December 1 for the last month of OLD policy and December 22 for NEW policy. That woman who had no name got very flustered and said she would transfer me to another Aetna office and THAT call?  GOT DISCONNECTED. ‪#‎timetocallalawyer‬ ?
I have PROOF from my bank that they TOOK all payments OLD and NEW.
Mother f***ers. Now I am doing the do-se-do with the inane social media customer service…who will tell me once again how they can’t help.
I hope Mark Bertolini and Karen Lynch are enjoying their cushy salaries earned off the aggravation of their customers.

ORIGINAL POST:

New Year, same Aetna.  The phone rang ridiculously early this morning. It was my pharmacy, CVS calling about my Aetna benefits.

Oh sure, I said hold on, Aetna helpfully changed ALL their plans on ALL their insureds…again.

So we go over ALL the numbers on my card…none of them work which means (you guessed it) no new Tamoxifen prescription for me today.

My pharmacist says she’ll call Aetna and we ended our phone call.

I start going through my paperwork, to see if I missed a number.  I hadn’t. But they once again signed me up with automatic bill pay which on them I have never trusted. And besides I always pay on time and technically early so why do I have to have that, right?

So I jump on the “new and improved” Aetna website. First of all it is not in the least compatible with Internet Explorer. Only somewhat compatible with FireFox. The only browser that really works with it is Google Chrome.

Half the website doesn’t really go anywhere. It appears child-like simple but all aspects still do not work. Especially super frustrating? Their bill-pay “partner”. Partner is corporate speak for they subcontracted something. And the subcontractor doesn’t let you get into your actual account. When you transfer over from Aetna it LOGS YOU OUT! And that is all you get.

Aetna 1

No, no I actually did NOT log out. I do not want automatic bill pay. But nooooooo. I can’t look. Every time I mosey up to the “partner” I am logged out.

I see long drawn out phone calls in my future because I can’t change any information on the regular website for Aetna, not even a phone number.

I am so glad that we are under the Affordable Care Act. I still have yet to see anything other than extra layers to get what I want and need.

I do not feel Aetna and other major insurers are breast cancer friendly really. Because if they were not only would be coverage be easier, so would navigating their damn websites. And I am hardly a computer luddite.

Oh with new and improved Aetna because I have really good doctors in a really good health system it is now $150 every time I walk in the door to their offices. And as a breast cancer survivor under active treatment I still have lots and lots of appointments each year.

One good bit of Aetna news is I see some opposition finally to their proposed merger with Humana (which a lot of hospital systems and doctors do not accept because they are so awful). Click on hyperlink below for story.

Anyway, Happy New Year to all of you and may 2016 bring you the best year ever…except in the case of health insurance because I simply do not believe it is possible.

When is the day going to come when they reform the actual health insurance companies?

Posted in breast cancer, health insurance | Tagged , , , , , | 1 Comment

quoted on the current mammogram crisis in america

sheeple

shee·ple
SHēpəl/

noun

informalderogatory
plural noun: sheeple
people compared to sheep in being docile, foolish, or easily led.
“by the time the sheeple wake up and try to change things, it will be too late” 
 

I have never been accused of being among the sheeple. Certainly not when it comes to breast cancer. But many women, right or wrong are complacent about their health and what we deserve in as far as treatment as women living in the land of the free.

Recently I shared my thoughts with you my readers about how I felt about the American Cancer Society and their…ummmm…new views/guidelines on mammograms. As a matter of fact this has so disturbed me that I have written two posts on it to date.

I guess this post counts as three.

About ten days ago I was contacted by a reporter named Alicia Booth. She writes for LifeZette.

LifeZette‘s mission is contained in its moniker: Life. Explained. Each day the site captures the wonder, the complexity, the frustration and the joys of life in all its variety. It was started by radio personality Laura Ingraham.

Anyway, I gave Alicia a call and here we are. The article launched today. Below is an excerpt, and I hope you read the entire article.

Mammogram Miscues

Why confusion remains over changed guidelines

The controversial and often confusing argument over when a woman should have her first screening mammogram has taken yet another turn. This turn, however, may lead to agreement.

The president of the American College of Obstetricians and Gynecologists is trying to streamline the medical community’s advice. Dr. Mark DeFrancesco announced he will be taking the lead in putting together what he called a “consensus conference” in January…..DeFrancesco also wrote the conference’s goal will be “to develop a consistent set of uniform guidelines for breast cancer screening that can be implemented nationwide.”

In the meantime, though, ACOG’s advice hasn’t changed.

“We still recommend annual screening for women starting at age 40, along with clinical breast exams,” he wrote.

In October, the American Cancer Society shook up the medical community by announcing that most women can start annual screenings at age 45, versus age 40, and every other year after the age of 55.

…One Chester County, Pennsylvania, survivor who blogs about breast cancer is especially concerned.

“If I hadn’t gotten mammograms, I could be dead, and that’s all that I kept thinking about when I saw that the guidelines had changed,” 51-year-old Carla Zambelli told LifeZette.

Posted in breast cancer, health insurance | Tagged , , , , , , , | Leave a comment

boycott the american cancer society

finish-draft-1

I will not participate again in the American Cancer Society Great Valley Relay for Life. Not because of the stupid marketing ploy on adding the Main Line to Great Valley when we are Chester County but because of American Cancer Society screwing with ‪#‎mammogram‬ guidelines.

I am a survivor of Breast Cancer who might very well be dead if I had waited to start mammograms.

Women should ‪#‎boycott‬ the American Cancer Society. Like Susan G. Komen they forget why they are here.

I believe this is all because health insurance companies hate paying for preventative care like this and now health insurance companies all over this country will use this as an excuse to deny coverage.

Get your mammograms. Get them annually. Have breast exams. Do self-breast exams.  In a blink of an eye everything can change. I am living proof of this and a lot of my friends are as well.

That is all.

New Guidelines Push Back Age for Mammograms

American Cancer Society recommends women start having mammograms every year at age 45, instead of 40

Oct. 20, 2015 11:01 a.m. ET

In the long-running debate about when and how often women should be screened for breast cancer, it is increasingly clear that one recommendation doesn’t fit all.

CNN: New breast cancer guidelines: screen later, less often

Posted in breast cancer, health insurance | Tagged , , , , , , , , , , | 1 Comment

dear american cancer society,

This was in my e-mail this morning and well I find it disingenuous at a minimum.  I am actually  a little bit offended.

Ok, so not to put too fine a point on it, but I left the Main Line to move to Chester County. They are blessedly not one and the same, and I totally object (as a survivor of breast cancer who participated in this event) to Great Valley being lumped into the Main Line for some marketing schmaltz.

Shame on you!!

The Great Valley, for which the high school is named which hosts the event, has a fabulous history. And it is NOT on the Main Line. NOT even close.

This is actually enough to make me lose interest in the event. If the American Cancer Society can’t be proud that part of their event is held in  Chester County at Great Valley High School, why on earth would I want to participate ? It’s like the American Cancer Society is ashamed to say they hold part of this nationwide event in Chester County. 

It’s where I live. I am proud of where I live and most importantly as a survivor, Chester County has a much more agreeable quality of life for me as a survivor.

Posted in Uncategorized | Tagged , , | Leave a comment

this is reality, as in REAL breast cancer awareness

19270933214_93de62726c_oThe below message  in italics comes from a new friend.  She asked that her friends share this. She is someone I met recently for something else entirely and I found out  she lives with Stage 4 breast cancer.

She is not my only friend who lives with Stage 4  breast cancer.  These women are my heroes. They are also incredibly zen considering what they live with.

As a survivor they inspire me to be better.

So I am honored to pass along this message. This is why you #thinkbeforeyoupink during Pinktober and breast cancer awareness month.  Message runs BELOW this photo. This is brave to me.

 

12106700_10208011903322040_5333718421574705882_n

Well, it’s “Pinktober”/ National Breast Cancer Awareness Month & I am emboldened (see photo). This is part of what Stage 4 breast cancer looks like for me.

I write now from my weekly chemotherapy chair and in half an hour I travel down to Philly for my daily cutting-edge radiation treatment at Penn.  At some point I will likely experience brain, liver, and further bone metastases, along with the pain I contend with. I will be in treatment for the rest of my life, however long that may be…. I hate October.

As a mother, sister, aunt, cousin, sister-in-law, daughter-in-law, friend, I would URGE you all to support research into PREVENTION this month vs. finding a pink ribbon “cure.”

We are doing something terribly, terribly wrong: 1 in 8 women will develop breast cancer in her lifetime.

Let’s work on the CAUSE end of things.

Of the 596 current breast cancer studies, only 22 are looking into PREVENTION.

And of course clinical trials are looking to drugs to treat the disease & extend life. Beneath the shawl in the photo is an area of aggressive skin metastases and a mastectomy scar which I will not share.

PLEASE help to keep my daughter, my nieces, my sister, sisters-in-law, cousins, friends from struggling through this devastating disease. This month I will be looking for and suggesting to you places to donate toward research into PREVENTION.

Please give generously and honor the future of those women and young women closest to my heart.

Thank you so.

 

maya1

 

Posted in breast cancer, health insurance | Tagged | 3 Comments

and zoom! #pinktober returns

pink roses

In June I marked my four year cancerversary.  The other day I marked four years since the completion of treatment.

I have had four years to get used to the onslaught of PINKTOBER and all the  ungodly pink products that really don’t raise money for anything other than temporarily pink corporate America.

I haven’t gotten used to it and I was speaking to yet another survivor last week who dreads #Pinktober too. As a matter of fact I have not in four years met a survivor who was  super excited over #Pinktober.  No matter how the survivor feels about being open or closed about their breast cancer, they all agree that #Pinktober makes them nauseous.

As survivors, previvors, and those going through treatment currently we are not defined by things like crappy pink rubber bracelets. We are defined by ourselves. This disease is part of our reality, but it does not define us as individual women.

So don’t wear or buy pink for me and for others, get yourself educated on the disease called breast cancer.

  • Get your mammograms.

  • Educate your daughters, mothers, aunts, nieces,  friends, men.  

  • Donate to responsible charities (which P.S. don’t EVER cold call you on your home phone!).

  • Keep up the pressure to Washington D.C. so all women get GOOD coverage, not just some bare minimum that causes as much stress as NOT having insurance.

  • Keep up the pressure to Washington, D.C. for reforms to big pharma and health insurance companies.

     

#ThinkBeforeYouPink

Last years I posted what I am about to post again. Live it. It’s the #truth

IMG_1766

Now ONE #Pinktober thing I will post is something I received from BreastCancer.org – My Radiation Oncologist Dr. Marisa Weiss is on The Today Show tomorrow. That is one of the women responsible for saving my life and getting me cancer free.

pinktober

Some of the strongest women I know have survived, previved, and live daily with breast cancer. Everyday, amazing women. Some others have lost their fight, but their will to live lives on in all of the rest of us. I choose to honor all these women by doing my best to live a good life….and not succumb to fake pinkness.

Anyway, that is all from me on the eve of yet another #Pinktober .   I wish I could be a more cooperative survivor and embrace it, but knowing it looms only makes me want to pull the quilt over my head. But I won’t….but I won’t be bringing home pink wheat thins, either.

 

#THINKBEFOREYOUPINK

 

I will leave you with this quote:

 

“The best protection any woman can have … is courage.” – Elizabeth Cady Stanton

Posted in breast cancer, health insurance | Tagged , , , | 4 Comments