now what if you are on tamoxifen?

Posted on December 5, 2012 by carla

DSC_0138So I think it is annoying enough that studies have decided women should not have pap smears necessarily on an annual basis – well unless you have had cancer and then I can’t remember exactly but I think I can get one every year and a half versus three years. But now they are changing it up again with Tamoxifen, and I have to be honest, the news is hitting me odd.

Being on Tamoxifen sometimes is hard.  I have mood swings and hot flashes.  Some days I just feel a slight undercurrent of blah achy tiredness for lack of a better description.  Some nights sleep doesn’t come easily, and some days I hate the way my skin feels and looks.  Sigh. Emotionally and physically some days Tamoxifen is just tough.

So I was watching the NBC Nightly News tonight and all of a sudden out of anchorman Brian William’s mouth comes the word “Tamoxifen”.

I had a hormone driven cancer, we have covered that ad naseum on this blog.  I have tried to make my peace with Tamoxifen although I find it rough on me, because face it the alternative to NOT taking it sucks.

But now this new study recommending has me confused.  Is five years going to be long enough for me?  If I don’t take it for ten years what happens? And say they would decide to have me take it for ten years, what would my additional risks be? I am being monitored closely by my doctors and so far so good, but this new study has put bugs in my head.

I am seeing my oncologist and stuff next week, so I will talk to him about this, but emotionally after hearing this news report I am in a weird place.  After all,  once you have had breast cancer, there is this little worry that simmers underneath.  Usually I can tamp down that small whisper of negativity, but today is just one of the crappy Tamoxifen days.

I am only human, and while I work really hard to remain positive, right now I am a swirl.

It will pass, and I will work it out.  I have a great life worth living.  It’s just some days the breast cancer of it all is daunting….and I say that as one of the lucky ones….

 
Breast cancer: Using tamoxifen longer saves lives 
By Marilynn Marchione, The Associated Press

Breast cancer patients who take the drug tamoxifen for 10 years instead of just the recommended five can further cut their chances of having the disease come back or kill them, researchers reported on Wednesday.

The surprise findings could change treatment, especially for younger women. Earlier research suggested that taking the hormone-blocking drug for longer than five years didn’t help and might even be harmful.

In the new study, researchers found that women who took tamoxifen for 10 years lowered their risk it would come back by 25 percent. They were 29 percent less likely to eventually die of breast cancer compared to those who took the pills for just five years.

In absolute terms, continuing on tamoxifen kept three additional women out of every 100 from dying of breast cancer within five to 14 years from when their disease was diagnosed. When added to the benefit from the first five years of use, a decade of tamoxifen can cut breast cancer mortality in half during the second decade after diagnosis, researchers estimate.

Some women balk at taking a preventive drug for so long, but for those at high risk of a recurrence, “this will be a convincer that they should continue,” said Dr. Peter Ravdin, director of the breast cancer program at the University of Texas Health Science Center in San Antonio….

About 50,000 of the roughly 230,000 new cases of breast cancer in the United States each year occur in women before menopause. Most breast cancers are fueled by estrogen, and hormone blockers are known to cut the risk of recurrence in such cases.

Tamoxifen long was the top choice, but newer drugs called aromatase inhibitors — sold as Arimidex, Femara, Aromasin and in generic form — do the job with less risk of causing uterine cancer and other problems.

But the newer drugs don’t work well before menopause….Brand-name versions of the newer hormone blockers, aromatase inhibitors, are $300 or more per month, but generics are available for much less.

The results pose a quandary for breast cancer patients past menopause and those who become menopausal because of their treatment — the vast majority of cases. Previous studies found that starting on one of the newer hormone blockers led to fewer relapses than initial treatment with tamoxifen did.

Another study found that switching to one of the new drugs after five years of tamoxifen cut the risk of breast cancer recurrence nearly in half — more than what was seen in the new study of 10 years of tamoxifen.

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being thankful

Posted on November 20, 2012 by carla

It is nearly my second Thanksgiving post breast cancer. And as I remain cancer free, I have a lot to be thankful for.

And yes, like many women who have had various cancers the fear of recurrence is especially vivid during the holidays for lack of a better description.

Some women I know have been dealing with thyroid cancer, and for some of those women this is not the first time dealing with this.  (Check out The Pink Underbelly today for example.) Some others, just the PS I love you of having had breast cancer….some days it just is what it is.  You deal and you keep moving while counting your blessings.

I have one survivor friend who also survived Super Storm Sandy and watched her North Jersey community sort of blow away.   I think she is fabulous and so are the rest of my Jersey Strong gal pals who survived Sandy.

I am thankful for my friends and family and my new life (I counted my life as starting over June 1, 2011 the date of my surgery to remove my cancerous tumor.)

I am especially thankful for my family unit of sweet man, boy, and critters.  I go to bed smiling and wake up smiling and you can’t ask for more than that.

Surviving breast cancer really magnifies the thankful of it all….if you are being positive that is.  My wish for those this holiday season who look at life as a glass half empty is that they can change their perception and look at life as a glass half full.  God never gives any of us more than we can handle and if we are alive and kicking, that is a true blessing.

And no, I am not some post-breast cancer Pollyanna.  I have good days and bad days, it makes me human.  But I am a realist and I am alive.  That in and of itself is something astounding HUGE to be thankful for.

Happy Thanksgiving to one and all!

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paying it forward after sandy

Posted on November 15, 2012 by carla

Dear Readers,
File under paying it forward. This is not about breast cancer per se, but it is important because we need to pay it forward.
Thanksgiving is next week, and so many are without homes courtesy of Super Storm Sandy. I was told the statistics for flood claims post-Irene which was also hard on this area was around 75,000 over 6 to 9 months. Sandy has generated in excess of 100,000 in a little over two weeks. Mind you these, figures are approximate in both instances, but you get the picture.
So I have to ask all you gals of the breast, have you considered how many of the people affected by Super Storm Sandy might be breast cancer survivors, in treatement, or about to deal with the breast cancer of it all? I ask all of you to remember how stressed you were going through this. I can’t imagine adding this kind of devestation to the mix.
This might be my last post until after Thanksgiving, so in the event it is sending prayers and best wishes to all. Hugs!

carla's avatarchestercountyramblings

Hi, I am about to post a giant list of who needs what in New Jersey post-Sandy.  A lot of this is focused on North Jersey, but there are some South Jersey places mixed in.

The list came to me from a friend who is a writer in North Jersey and who was affected by the storm. She got the list via Jersey Shore Hurricane News on Facebook.  If you need to contact Jersey Shore Hurricane News e-mail jerseyshorehurricanenews@ gmail.com or visit their page on Facebook for a number that accepts texts.

I am posting this here hoping it reaches people who want to help, but don’t know how. The holidays are upon us, so if local business owners exist who can offer to defray shipping costs for people in the event they want to ship goods to any of these locations, I hope you will pay it forward and…

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unintentional ignorance

Posted on November 8, 2012 by carla

Ask any survivor and they will tell you that it is hard to hear of the passing of other women who have struggled with any form of cancer.  If you know the person, or had any life interaction with them it is particularly hard.

Now maybe it is just because I am on Tamoxifen and some days emotions are just magnified, but I find myself very upset this morning, and yes, I will write about it. I can’t decide right at this moment if I am more upset than offended, which (again) in part is why I am writing about it.

The other day I wrote about the cycle of life and two losses I had experienced personally. I had written in both cases that these losses were women I found brave in their struggle and inspirational in their own right. They were women who weren’t my closest friends, but in both instances had just been part of the fabric of my everyday life for many years.

When you are a survivor of cancer,  that fabric of everyday life is a big deal.  It often represents normalcy in your world when things like surgery, treatment, post treatment, and whatnot turns it upside down.  When you face a cancer diagnosis, you face your own mortality for the first time no matter how old you are.  Mortality is something we all dance with, even every time a friend, acquaintance, or loved one passes.  But when you receive a diagnosis of cancer it takes on a whole new sharpness.  You feel it in Technicolor.

As those who have read my blog since the beginning know, I have been honest and open about my disease, my surgery, my treatment, my life post everything and while taking Tamoxifen.  I chose to be open, which is a shock to many still. I chose to be open so I could remain positive. Also part of what helped me remain positive were some women who inspired me along the way.

Today my positivity is shaken to the core.  I received a message this morning from a mutual friend regarding one of the women I had written about.  Even though there is an obituary out there on the Internet for this person and a public viewing and memorial service, and even though when you die like it or not you become part of a public record , and even though this breast cancer blog is widely read and all-around respected, these people whom I have never met and am trying desperately to respect have told my friend that they want me to edit the post I wrote. In essence to make one of these women who touched my life disappear.

I cannot begin to express how utterly offended and hurt I feel. I am a writer, it is how I express myself, and I feel like I am being told how to grieve.  And I am also upset that they sent their message through a friend.  How I feel about this might very well affect another relationship I care about.

And how I feel about this is that I can’t and shouldn’t have to change what I wrote.  There was nothing immoral, illegal, or untoward about what I wrote.  It was a tribute to women I knew who were inspirational on some level to me.  I don’t just write about random people.  These people touched my life, and I am now struggling with the fact that while I understand these other people are grieving, I also understand how all of this makes me feel.

I am sorry to say, that I think for the time being I have to go with how I feel.  I am not some awful person.  I am a woman who survived breast cancer. And I am filing all of this under unintentional ignorance.

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the continuing cycle of life

Posted on November 6, 2012 by carla

I woke up this morning thinking about my sweet man and how lucky a gal I am.  As many know, the tamoxifen has robbed me of my ability to sleep through the night most nights.  But when I awake, I am not alone.  He is very attuned to me, and once again, when I awoke suddenly in the middle of the night last night, a hand gently reached out for me and rubbed my back until I dozed off once again.

There is not a day that I do not literally count my blessings. And marvel at the love which has found me in my late 40s.

Life continues and sometimes on some days it is just hard.  This morning is one of those days.  Another wonderfully strong woman succumbed to cancer overnight.  Someone I knew.

Her name was Pat Bedard.  She was a long time survivor of breast cancer, who also had played beat the clock on ovarian cancer until three months ago when it sneaked back worse than ever.  Her chemo stopped working three months ago, and as per her neighbor Kim who is a friend of mine, she took a turn for the worse six weeks ago and passed in her sleep last night surrounded by her family.

When Kim told me this news this morning, I cried like a baby.  Pat wasn’t my best friend, but for many years before I moved she was part of the fabric of my life.

I had gotten to know Pat through the heaviest of my activism days.  She was incredibly bright and her career was interesting: she was an authority on European travel and author of The European Traveller newsletter.

She was a woman who never complained about her cancer(s), and  she was also very   independent. We shared a love of Victorian houses.  And an occasional spirited debate over local politics.

Requiescat in pace Pat Bedard.

Also, there is a woman I wrote about before on my blog: my old neighbor Myrna.  She had been diagnosed with late stage colorectal cancer around the time I had my surgery in June 2010. She was always very inspirational to me as I went through treatment because she was so positive and funny and peaceful. I marvelled at her being able to do that.

Myrna at the time of her diagnosis had no health insurance.  I can’t even imagine the terror she felt at that.  The hospital that treated her, treated her even without it.  Eventually she became old enough for medicare, but at first she had nothing.  She was treated at Lankenau, where I received my radiation.  As a matter of fact some days when I had radiation, she was in patient getting chemo and I used to visit with her.

Myrna was a constant in my everyday life as well for many years.  We were neighbors for so long I even remember her mother Lillian.  Myrna nicknamed me Princess Thundercloud.  She was a psychologist by trade and a very patient and compassionate woman who could put up with all sorts of people – I still marvel at that.

Another independent woman, she was also just so very nice.  She and I both loved to garden, and I was digging in the dirt the day I got the call she had passed.   October 26, 2012.

Requiescat in pace Myrna De Voren

With the cycle of life, there is not only death, there is life.  In this case, a birth.  My friend Michelle, the woman I asked you to pray for  in September, has had her baby. His name is Nolan and he is a fighter.  He is a beautiful little boy, and he is still hospitalized.  He is a little over six weeks old and is still in the NICU. If I had permission, I would post a photo of him for all of you to see.

Keep Michelle, her man Jim, and baby Nolan in your prayers.  He is a miracle of life and they are a family deserving of much happiness.

Now for me, a little news.  My sweet man, boy, and I have found a place to make our home together.  So I will be on the move again.  And my recent mammograms show everything is clean and clear for me.

Today is election day.  Today we vote.  When you remove all the social issues that cloud the judgement of many, you need to decide what is important to you.   And remember: when you vote, vote for yourself and your family not for some person shoving literature into your hand at the last-minute telling you that you “know how to vote”.

Our founding fathers suffered and bled and died so we today could be free and could vote.  Don’t waste this right, exercise it.  In the USA it is the best way for your voice to be heard.

I hope all are well and my last shout out is to my friends in New Jersey post-Sandy (one of whom is a fellow survivor).  To them I say simply “Jersey Strong.”    Sandy is New Jersey’s Katrina.

And incidentally the house is not mine in the photo.  Just one of the many I have photographed over the years that I like.

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music on a rainy day

Posted on October 19, 2012 by carla

I couldn’t decide what blog to put this on, and after listening to my high school classmate’s voice which is still like velvet and molten chocolate (if molten chocolate had a sound), I thought here would be the perfect place.

The past week has been like emotional sixes and sevens for me after losing my beloved little Peanut (whom my friend Bonnie memorialized here on Philly.com).  October is also hard because of all the in your face PINKNESS (ugh)….

So anyway when I got a notevia e-mail from one of my Shipley classmates who lives in Europe and is a contemporary R&B singer-songwriter that she had launched her new website and had a solo album coming out, it was just what I needed to listen to.

Her name is Rhonda Dorsey and I hope you enjoy the little video I posted.  I know a lot of women who are currently going through treatment for breast cancer continue to read this blog, and I thought you might like the chance to soar for a few minutes as it were and get lost in a new sound.

If you like what you hear, check out Rhonda’s sound more on Amazon UK .  She has done all sorts of amazing stuff including playing with one of my all time favorites Phil Collins in Europe.  From standards, to Gospel, to her own music, it’s all good so have a listen.

Music on a rainy day…. I am truly lucky to have even come in contact with such amazingly talented and nice people over the course of my life.

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Posted on October 11, 2012 by carla

carla's avatarchestercountyramblings

Today is a sad day for me.  Today I had to say good-bye to one of my critters.  A little red-brown dachshund named Mr. Peanut.

Mr. Peanut entered my life with the oversized name of Eugene.  He was one of Bill Smith’s boys from Main Line Animal Rescue a few years ago.

When I rescued him his story was a sad one – he had been in a fire and abandoned by his humans.  As the story goes a kind fireman bought him to MLAR.  A miniature dachshund, he was even smaller when I rescued him.  And he had never had basic veterinary attention.  He was in fact, seven pounds and a few ounces and for his size, he should have been heavier.

He quickly wormed his way into my heart and the hearts of others in my life both friends and family.  He was a smart little guy…

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think twice before preaching pink to a survivor during october.

Posted on October 10, 2012 by carla

There are things I find unnecessary in this rah-rah month of Pinktober.  Take for example the photo floating around on Facebook (above).

What will liking this photo do for breast cancer?  What will liking this photo do for breast cancer survivors?

When I asked these questions, I got back the following comments:

(from a man): it illustrates the power of not hiding behind illness but standing up and saying “you tried but i won”. certain times brazenness such as the woman in this picture is exactly whats needed to wake people up to things

(from a woman) it shows that women are still beautiful even without their breasts

There are other comments, but  I chose those two.  I am sorry, but as a survivor, I do not personally need to be “woken up to things”.  I am a survivor and proud of my lop-sided self and I don’t need to be shown dark photos of the super scarred to do so. I mean what is the other thought here? That because I am not that scarred physically from breast cancer I should feel guilty? Each woman’s cancer is different.  Each surgery is different.

That photo above is not beautiful.  It is dark and disturbing to me. The bars on the windows behind the woman look like jail.  So she doesn’t look like a proud survivor to me, she looks like she is in prison. And how you interpret prison could be in all sorts of ways – mental, physical, psychological.

It is only October 10th and seriously this month of pink hyper overload is driving me bat shit.

I am not the only survivor seeing red over pink.  Check out The Pink Underbelly.

I am a woman who survived.  I did it positively for the most part and on my own darn terms. I do not need to be hit in the face day in and day out with horrible jagged images of horrible jagged scars throughout the month of October.  I am trying to be positive, not being forced to face every other woman’s scars (no offense intended to my fellow survivors.)

Survivors are beautiful just for surviving, they don’t need to show their scars to prove their self-worth. Just like we don’t have to purchase pink garbage so manufacturers can make a bump in certain profit margins during October that no breast cancer charities will ever see. 

Yes, I am a survivor and if I have to post every single day of October that Pinktober is OBNOXIOUS, I will.

So here y’all go out there.  Want to see a boob shot for pinktober? Here’s mine from this time last year. Is it beautiful? I don’t know.  It’s just a slightly arty photo of a breast and a scar.  But it isn’t dark and disturbing. And since I was kind enough to flash all of you, please consider a small donation to www.breastcancer.org in the name of ihavebreastcancerblog. Celebrate LIFE people, not scars.

Now I will leave you with an oldie but goodie from the Police.  Perfect song for Pinktober:

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acting one’s age

Posted on October 9, 2012 by carla

As a breast cancer survivor, I have this heightened awareness of the effect of chemicals and toxins on the body.  It has also made me think about cosmetic surgery, because quite frankly I was barely out of surgery and women were telling me what I could  get “fixed” in addition to my now lopsided breasts. This evening on television I looked at Marie Osmond and her body of “work” and I couldn’t help but wonder why.  She was always a beautiful woman, but now she looks a wee bit pulled too tight and a lil’ frozen. I kept thinking if Ramona Singer of the Real Housewives of NYC got run over by a bus (or another housewife) she could step into the odd face category on the show.

I have pretty much decided I am not going for any Hagatha the Horrible award, but how I am going to age is how I am going to age. I am not going to try to look 25 when I hit the big 5-0 is what I am saying.  I am not going to be dumpy frumpy, I am going to be me…maybe with some wrinkles and some gray hair.

Yes, that means being really boring as far as some are concerned and doing things like using the crystal and Tom’s natural deodorant vs. smelly wonderful antiperspirants.

I am beginning to sound like my own mini campaign for safe cosmetics – but seriously?  There is a website called the Campaign for Safe Cosmetics. Check it out.

Sweet Jesus I am beginning to become like that Adam Ant song – Good Two Shoes (don’t drink, don’t smoke what do you do?)

And yes, I was never a big drinker before the big C, and I definitely watch it now because even one lowly glass of white wine causes hot flashes and the Tamoxifen is bad enough all by itself – so there is that risk/reward thing. No more occasional ciggies, either.   (Yes, really.)

But after a back and forth discussion with my sweet man, you can count on the fact I will never be a Botox or Juviderm queen, and I have kind of sort of decided that if my hair wants to eventually turn grey or white than that is what is going to happen.

My hair is only threaded with grey and I was using semi-permanent color every couple/few months and then I thought if I am scouring shampoo labels and deodorant labels I might as well think about the hair color of all.   And I know some women only slightly older than I whose grey/white hair is simply beautiful and they don’t look old.  My sweet man said he would rather have that then color out of a box because it was natural. Same with lopsided versus perfect plastic breasts.  (Yes he is pretty awesome and supportive.)

So we shall see if I can do this.  Hair is kind of  a vanity thing with me.  The lop-sided breasts don’t bother me so much. Kind of a badge of honor.

In other news, is it November yet?  The pink of it all continues to make me nauseous.  And I am trying to be patient when non-survivors want to tell me about breast cancer….sigh….been there, done that, have got the t-shirt.

In that vein, let us discuss what “pink washing” is:

Pink Washing:

Pinkwashing: A term used to describe companies that position themselves as leaders in the fight against breast cancer while engaging in practices that may be contributing to rising rates of the disease.

We’ve all seen the beauty products dressed up with pink ribbons and cute promotions. Unfortunately, many of these same corporations continue to use chemicals that are linked to cancer.

The Campaign for Safe Cosmetics has repeatedly asked Avon, Revlon and Estee Lauder – the three largest users of the pink ribbon in the cosmetics industry – to sign the Compact for Safe Cosmetics, a pledge to remove chemicals linked to cancer, birth defects, learning disabilities and other harmful health impacts from their products.  The companies have been unwilling to make this public commitment to eliminate carcinogens and other chemicals of concern from their products.

If they are serious about being champions for women’s health, the pink-ribbon ringleaders must stop buying carcinogens and other harmful chemicals from the chemical companies.

Just sign me irreverently yours and graying ever so slightly.

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and now a word from our suddenly pink sponsors

Posted on October 1, 2012 by carla

Ah yes October 1.

The beginning of breast cancer awareness month, the month where all survivors and people going through treatment are hit with a visual and verbal reminder every minute of every day about cancer.

I understand that the medical and nonprofit professions want heightened awareness regarding the disease breast cancer, but being hit with it in the face every single day combined with the onslaught of everyday  products that suddenly turned pink and let us not forget the ubiquitous pink crappy bracelets, it’s just sensory overload.

I am wearing a pink t-shirt today.  Not because it is the start of breast cancer awareness month, but because it looks cute with the rest of the outfit I am wearing.

I have worked really hard since my diagnosis, and some days quite frankly it’s a struggle to stay positive. Being barraged with a month-long rapid-fire onslaught of all things breast cancer, isn’t necessarily a positive thing in my opinion.

And truly, what will it also mean?  It means you will see celebrity survivors all month-long,  versus real women dealing with the every day of this disease good and bad.

Thus far the only celebrity who has had breast cancer that I have seen handle it all with reality and grace (plus self-deprecating humor actual survivors can relate to is actress Kathy Bates.  Yet who do I see first thing this morning? The bobble headed Giuliana Rancic.  And of course she is launching what else…a line of garbage we don’t need to own for Loft called….what else? “Live in Pink”  (I read about this in The NY Daily News .)

Ok so people will undoubtedly be reading this and say I am being unnecessarily harsh, but look at the fine print on these must have items for October as the world temporarily turns Pepto Bismol pink – look and see HOW much money is actually being donated to breast cancer charities and breast cancer research.

In Giuliana Rancic’s case it is 25%.  As a matter of fact you see that a lot.  Just check out the NY Daily News article today –  they urge women everywhere to:

“Shop for a cause today and all month-long with our guide to stylish and charitable pink products that benefit organizations dedicated to fighting the disease.”

You know what I urge?  If you feel it in your bones to donate to breast cancer research, or a charity that helps women pay for treatment, helps them get through emotionally and physically, by all means donate.  Check the charity you are considering out with Guide Star and your state’s charity office and donate DIRECTLY.  Donating directly means the charity gets 100% of  your donation.

When you buy whipped up pink products, only a portion goes to the charity, and if you read all the fine print you will also see that if you wait and buy a pink product when it goes on sale, the deal with the manufacturer is they only donate when the item is full-price.

I am sorry, I just don’t like it when people try to commercially capitalize on the disease called breast cancer.  And one other thing, people who have never had breast cancer? Unless you are a medical professional in the field or a family member who has had someone close with the disease, please don’t tell people who have or have had the disease you understand how they feel.  Truly, not to be mean, you do not.

Now, below are  three charities I think are worth donating directly to.  I am not being compensated by them in any way, shape, or form.  I point them out because they are a better alternative than just donating to monster charities like Komen. And to them your gift will mean more than it will to a manufacturer when you buy a piece of pink plastic, or a pink box of crackers or whatever.

BreastCancer.org

Save 2nd Base / Kelly Rooney Foundation

Living Beyond Breast Cancer

None of you even asked what October means to me, even as a survivor?  Simple.  Pumpkins.  Pumpkins are happy and fun. Please don’t paint any pink.

And a final word about breast cancer charities today- and this is for new survivors.  Don’t be guilted into attending expensive non-profit events you can’t afford post breast cancer.   Pay down your bills first.  Charity always begins at home.

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