more on tamoxifen

I don’t like taking Tamoxifen but I do.

Why?

32The alternative is unacceptable to me.

Anyway, I was interviewed recently for an article for Living Beyond Breast Cancer’s newsletter and I will embed it here so people can read it if they so choose.

This week another woman I know joined the breast cancer club.  Soon she starts radiation. She is  calm and positive which I love to see.  Someone else I know had their surgery earlier this week, so the cycle keeps on going.

And as Angelina Jolie said earlier this week:

Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

 

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signs

10Today is my birthday.  My sweet man’s too.

Today has been a morning full of signs thus far.

By now my new friend Melinda should hopefully be through her breast cancer surgery.

In the supermarket this morning the man behind me was buying a Happy Anniversary balloon and a beautiful and giant bouquet of white and yellow roses – today is their anniversary.

I got waylaid in traffic by a funeral cortege, and then I read the New York Times Op-Ed by actress/director/activist Angelina Jolie about her double mastectomy due to her familial history with breast cancer and an active BRCA gene.

The last sentence in her essay (which I will share an excerpt of at the bottom) hit home. She said:

Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

Her words are quite profound, and I will be honest I found tears running down my face after I finished reading what she had written.  It is no secret I am often critical of celebrities and how they treat breast cancer.  Not so with Angelina.   I can only applaud her for the raw honesty and dignity in how she has treated this.  I know quite a few previvors and they are amazing and brave women.

So my birthday today has been full of many signs.  I see them as all positive.  They seem to show me quite a few stages of life and the reality therein.  Some could take them as negative given the fact a woman I know had breast cancer surgery earlier this morning and I saw a funeral cortege pass by me, but why? I see it as positive that Melinda is dealing with her cancer and that she is having surgery at a low stage.  As for the funeral cortege, in the midst of sadness is the ultimate celebration of life.  Yes we mourn when someone passes, but we also celebrate who they were and how they touched our lives, don’t  we?

It’s like today I bore witness to all these vignettes of life and how is that a bad thing? After all, my life is so much better than it was, so how can I complain?

Today I begin my 49th year. I am hopeful it will be the best yet!

Here is Angelina Jolie’s editorial:

Op-Ed Contributor  My Medical Choice
By ANGELINA JOLIE   Published: May 14, 2013

MY MOTHER fought cancer for almost a decade and died at 56. She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.

We often speak of “Mommy’s mommy,” and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.

My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer….Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.    jolie op ed

On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action….I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.

It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that’s it. Everything else is just Mommy, the same as she always was. And they know that I love them and will do anything to be with them as long as I can. On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity…For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices…..I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer…..Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

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cancer and the job front

8589943530_bec0085543_bA report on KYW News Radio 1060 today made my ears perk up when I heard it.  It was about cancer related complaints having doubled with the EEOC  (Equal Employment Opportunity Commission)  in the last decade.

Here is the text of what I heard on the radio in the car:

Cancer-Related Complaints Have More Than Doubled Over The Last 10 Years By Cherri Gregg

May 6, 2013 4:27 AM

 The Equal Employment Opportunity Commission has seen an increase in the number of cancer-related complaints over the past few years.

The number of cancer patients filing claims with the EEOC has more than doubled since 2003…..Part of the spike may have resulted from cancer being specifically included as a disability under Americans with Disabilities Act, but it could also be heightened awareness of rights among employees.

“If you’re being asked, ‘Do you have cancer,’ ‘how many days of work have you missed,’ they could be trying to screen you out,” says Shannon Powers, spokesperson for the Pennsylvania Human Relations Commission.

She says the Pennsylvania Human Relations Act prohibits employers from firing or not hiring someone because they have a disability.

“The Pennsylvania Human Relations Act defines disability as anything that significantly limits one’s normal life activities, and it can very well include cancer,” she says. “You do have to be able to perform the job, but your qualifications are really the only important thing.”

Those who have followed my breast cancer blog from the beginning know that I had issues with my previous employer.

We’ll start with because they were a small company they did not have to offer health benefits to employees even though the owner of the firm had corporate health benefits for himself.  Employees could have been offered access to benefits and paid their own way under his plan, but that never happened while I was there. There was also no access to a retirement plan.

There was no set vacation or sick day schedule. Now that can work to your advantage if you need a couple of extra vacation days, but if you were having a major surgery it could be and was extraordinarily nerve-wracking.   I pushed myself post surgery much sooner than I should have because I was afraid NOT to work. That is a fear no one should live with that has a legitimate illness or health condition that they need treated.  I never asked my former employer for a hand out, but a little more consideration at the time would have been nice.

The audio version of the report also talked about the EEOC or Human Relations people saying cancer patients had rights under FMLA or the Family Leave and Medical Act.  What the report neglected to inform listeners is that  small companies are EXEMPT from FMLA. If your employer is under 50 employees, they don’t have to pay attention to this.

The alternative is to sue under Americans With Disabilities Act.  And hell yes, I thought about it and sought legal counsel.  I was a triple threat: a woman over 45 with breast cancer. But that whole suing an employer is a long drawn out legal process that is very stressful ( I know people who have sued under this act and won). So I weighed my options.  I had the choice to have a protracted legal battle, see if I could find something within the company that reduced my stress, or leave.

There was nothing else available for me to do with my former employer (again – it is a small company so there weren’t tons of jobs), so as you all know, I made the difficult decision to leave in February 2012 as in order to reduce stress post breast cancer. It wasn’t so secret and was even mentioned in an article about my former company somewhere around then in the Wall Street Journal.

I am a fighter, but for me personally there was not enough to be gained if I filed litigation under the Americans With Disabilities Act as what they call in the legal industry “a triple threat”. Could I have succeeded with a claim? Quite possibly, but the trade offs weren’t worth it to me.  After all, I was trying to reduce stress to be more healthy as a now cancer survivor.

Amusingly enough,  a blogger who recently went of in a tizzy on me (I didn’t like her blog) had as her big “a-ha” moment was “you haven’t worked in a year”. Ok wow, no big secret I took some time off and changed the way I live…I had breast cancer.

Sheesh, it alters you. And people have absolutely NO idea how it drains you to keep up a close to normal schedule post-cancer surgery while also undergoing treatment.

But the jaded skeptic in me thinks the laws are indeed still designed to be discriminatory against cancer patients, especially women.  After all, a lot of cancer patients are dealing with too much to fight everything at once.

Anyway, I am glad this news report is out there.  I wish they would go further and talk about all the people who had issues but did not report it to anyone and why they chose not to report.  I think that would be interesting.

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life and time march on

bleeding heart

You are never too old to set another goal

or to dream a new dream.


- C. S. Lewis

In exactly one week it will be two years since I began this blog about breast cancer - as in my life experience dancing a dance with this disease that afflicts millions each year.

On Sunday, I mark two years since my initial diagnosis.

June 1st is my second cancerversary - a/k/a out out damn lump day.

In 3 years and a couple of months I will be finished with Tamoxifen.

What a long strange (yet wonderful) trip it has been. Well not wonderful all of the time.  Let’s be honest.  Having and recovering from breast cancer requires a LOT of emotional energy along with everything else.

I will admit that recently I have had a bit of a struggle. I haven’t wanted to whine about it up here lest some of you think I was a big baby or ungrateful or whatever.

The Tamoxifen has been hard on me again.  Where I was sleeping better, it started another round of sleepus interruptus with me.  Also some wicked hot flashes and night sweats……which are most unpleasant. And when you don’t sleep, the emotional component is every little thing becomes a general pain in the ass.

Yes, I actually did the stare down with my Tamoxifen bottle recently.  I would never play Russian Roulette with my life and just stop taking it, but it has given me pause lately.

Yet when Tamoxifen gives me pause, I remember that I can hack it and look how far I have come.

Lately too I have discovered some new critics of my writing. One person in particular because I said I did not like their blog. This blogger totally went overboard.  The irony is I have never met this woman, wouldn’t know her if I tripped over her.

But hey, when you write in the public eye, you take the good with the bad, even I know that.  One of the things this woman seemed to obsess over is that as per her calculation (because she knows me, right?) I had not worked in a year.  Yeah o.k., right I missed the memo where anyone had the right to judge me for resigning an incredibly stressful job post breast cancer.  LOL, it’s not like I hid the truthfully hard decision to do this from anyone. I wrote about it! What was  the most odd is how she threw it at me in some “a-ha!” moment like I was ashamed of it or something. I now know who she is, and suffice it to say, she is lucky I am not as mean or as angry as she is.  But that is one of the gifts of breast cancer, and I am not being sarcastic, either – you actually can let things go a little more easily once you have had to face your own mortality.

The past year I have marched to the beat of my drummer and no one else’s.  I have worked my whole life, and continue to do so.  I am just more low-key, adding in a lot of what I want to do into the equation.  Because of my sweet man I am able to do this. And we continue to build our lives together – and I love that man more every day.  If anyone had told me in high school some day I would fall in love with a boy I was just friends with in high school I would not have believed them. But oh my, how lucky I am to have him!

Hitting pause and slowing it down has been the best thing I could do for myself.  When I hit that wall of exhaustion I had to stop and reevaluate.  So here I am.

Am I the same person or a different person from when I began this journey? A little bit of both.  I am me just different. This experience has indeed altered my reality.

I chose a very public way of dealing with this by writing a blog.  I have even become part of a book of survivor stories. ( See The Pink Moon Lovelies: Empowering Stories of Survival on Amazon.com) I also chose to be positive, and that has been a chore some weeks – it is not as easy as it sounds, but at the end of the day I am very, very lucky thus far and have no business being anything BUT positive.

Other things – I have tried to reduce chemicals and stuff in my life so I decided to stop coloring my hair – the chemicals going on my head skeeved me out a little when I thought about it.  I hadn’t been coloring for that long anyway, so it wasn’t so hard. My hair is slightly threaded with gray, but not that much.  I will say I have noticed some women who haven’t seen me in a while looking at my hair like I am crazy, which is rather amusing.

I hold my breath every time I have to take a test, but I know I am not alone with this.  I have met other breast cancer gals who like me had issue with the whole “survivor” word.  One woman I know quipped recently that she doesn’t consider herself a survivor that she just did what the doctors recommended.

Again, can I say I know I am one of the lucky ones.  I know I am.  I know other women who have had a much harder time getting on and getting through, and I know some incredibly fabulous women who have had recurrences. I am blessed.

I am blessed in other ways too.  Today I received a note from a woman who reduced me to a puddle of tears.  I was just that touched by what she had to say.  I am going to share:

I have spent the last week reading your entire blog from the first post to the last post. I felt somewhat sad last night as I finished the last post–like ending a good book, but missing the experience.   We are so much alike it is scary–from liking old houses, to calling people on their rude crappy behavior, living in the Philadelphia area, writers, profound thinkers, love of the countryside, a tween stepchild (I just got married Oct 2011), having been dumped by an ex a few years ago, almost the same age, having a wonderful man–’sweet man” as you say : ) , and breast cancer. I guess the one notable difference is that you are a survivor, and I am just beginning the process–I rec’d the diagnosis on March 22.

I was really ready to just lay down and die (seriously), however, when I found your blog, I was able to see more clearly. A lot of other sources I read were frightening in the way that I felt a horrific dread from them and a lifetime of pink bizarre stuff.  I feel better about the Tamoxifen after reading your experience.

The past month has been a bizarre arena of Dr.’s appointments, and a blur of “who am I? What is my name? When will I wake up from this dream?”  Surgery is scheduled for May 14th. Chemo, Radiation, and Tamoxifen to follow. I feel like someone has gone: “Duck, Duck, GOOSE” and I was the goose who got the cancer. No family history save for 1-cousin who is younger than I (she is stage 4, aggressive tumor…in remission and doing ok). I am somewhere between. a stage 1 and 2–no one will know for sure until the surgery.  It’s a low risk tumor.  While I want the surgery immediately (like yesterday), I am still frightened to death over it….. I’m sure you understand this feeling

I also had to laugh over your post about the oncotyping….hehe…I read your post about it last Thursday, and then Friday, I rec’d a similar call. 24-hours earlier I had no idea what the hell an “oncotype” is—sounds like a pair of shoes for seniors.

Facing one’s mortality is the creepiest thing I have ever experienced. Anyway, I was hoping we could share more over the next few months. You have helped me tremendously–so much so that I could barely function until I started to read your words. I hope I can follow in your path. Amazing the support from strangers…  and how “friends” can just sort disappear…. Going thru cancer is much the same as when you are going through a divorce/break-up. There are some people that think it’s viral and that they will catch it just by being around you. Then there are the others that think you are going to die tomorrow. I know people react differently to this type of information–I do get that, but some people just act like clods.

Anyway, sorry for the length. I would have emailed privately, but I could not find an email address, so I hope me sending you this note/post this way is ok.

Melinda is her name, and she has her surgery on May 14th….my 49th birthday.  This woman, who doesn’t know me at all, made me realize I did do the right thing by starting this blog. Here e-mail is like this crazy life affirmation to me that more women than not are connected by something.

Melinda – baby steps and you will get through.  Don’t be afraid to laugh and cry and raise a little hell.  If people can’t handle what you have to say, that is on them, don’t bring it on yourself.  Melinda, I can’t thank you enough for writing to me. People like you make baring all this drivel out loud worth while.

I will be thinking of you on May 14th and am asking my other BC gals to throw up a prayer or two and positive thoughts into the universe.

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something fabulous: being part new breast cancer survivor book

photo pinkA long while ago my friend (and amazing writer) Nicki Boscia Durlester told me she was writing another book.  Only this one would be different.  It would not just be her journey through breast cancer, it would be the stories of many.

Nicki asked me to be part of this, and I said yes.   And as the calendar creeps up on the 2nd anniversary of my diagnosis and the 2nd anniversary of my surgery, the book is out and published.

It arrives at ironically another important time for me: next week marks my next rounds of  mammograms and breast and other ultrasounds.   And as crazy as it sounds, yesterday I was a little anxious at the thought of this.  I know these feelings are human and natural, and sometimes it annoys the crap out of me that before my diagnosis I just sailed in and out of these tests.  Now I hold my breath before and after as I wait for the “all clear”.

So along comes this book, just at the perfect time.

rear bookI am incredibly proud and rather emotional at being a part of this book.  There are a lot of survivor stories out there, and it is an honor to have been chosen to stand with all these amazing and incredible women.

Like every breast cancer diagnosed, no one woman’s story is exactly the same although you will find threads of commonality that bond us together.

If you are a survivor or new on this journey, books like this let you know you are not only not alone but should never be without hope.

I am floored by the power of words today as this book which was literally just released is currently #9 on the bestsellers list on Amazon for all cancer books, #31 in diseases and disorders and #1,074 out of all books.  There are 1,748,230 book titles on Amazon.

Order exclusively through Amazon:

The Pink Moon Lovelies: Empowering Stories of Survival [Paperback]

Nicki Boscia Durlester (Author, Editor, Introduction), Susan Long Martucci (Editor), Shera Delia (Cover Design), Dr. Kristi Funk (Foreword), Melissa Johnson Voight (Contributor), Maria Flodin (Contributor), Lisa Marie Guzzardi (Contributor)

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playing doctor with tamoxifen

April 28th marks two years since my diagnosis. June 1st marks my second cancerversary of my surgery and subsequent treatment.  This upcoming  October 28th marks two years on Tamoxifen.

photo

Let me be honest about Tamoxifen once again.  I don’t like it.   I have said it before and will say it again: 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. Some days  Tamoxifen turns my emotions into the Moody Blues.  I seem to be feeling things at a more elevated level as this drug that will live in me for five years continues to settle  in.

Tamoxifen so screws with my sleep some days I am down right miserable some days as well as exhausted. And the hot flashes and night sweats  honestly suck. Some days, I feel like a hot mess.

Truthfully, I have never had a terrific self body image – that has nothing to do with breast cancer that has more to do with a mother that as much as I love and adore her from the time I was a tiny child one of her life lessons was her constant obsession with how people looked: their weight, are they sloppy, and so on.  She still obsesses over that and is especially still obsessed with how much people weigh.  (Phrases like “she just let herself go” and “all that soft fat” will be forever burned into my brain.)

So for me Taxmoxifen with its emotional and physical side effects is hard.  It is NOT insurmountable, but it is hard.  And I hate the way my skin is so dry now that the estrogen is getting sucked out.  I am lucky compared to some because I have not felt the lack of libido some women complain about, that’s all normal so far.  But the weight issues, the tiredness, and the hot flashes that some days just make you feel limp.  And with Tamoxifen some days are the days of the leaky bladder and feeling like you always have to go. And why is all this happening? Hello, your body is getting forced into menopause.

However, I have to be practical: I was going to hit menopause sooner or later, right?

So as much as I complain, would I ever just pop myself off Tamoxifen without the advice or counsel of my doctors? No way.  I might be my own best advocate, but I am no doctor.  And certainly not a fool. I know the interpretation of my oncotype test and low score is partially predicated upon the fact I will be taking Tamoxifen for five years.

Until yesterday, I never quite understood the concern on my oncologist’s face when we were first discussing Tamoxifen and I was a little scared about it.  Dr. Hartner looked me straight in the eye and said something to the effect of “You are going to take it, right?”  I mean of course, I was going to take it, I was far more fearful of my reality if I did not take Tamoxifen.

My doctors are monitoring me closely.  And that includes frequent visits to my gynecologist / endocrinologist , and to the lovely ultrasound /MRI people.  I had other issues prior to breast cancer – fibroids, cysts, ovaries that never worked right as a fallopian tube just filled with fluid.  Sounds gross, but at the end of the day it mean I would never bear my own children.  (I now have a wonderful step son, so God took care of me on that, didn’t he?)

So back to what made me sit here this morning in my “Cancer Sucks” T-shirt typing away furiously.

I am part of this breast cancer group.  And yesterday on the message board a woman whom I do not know and who is one of the many of thousands of members says:

I  secretly stopped taking it when I read the statistics .  I am not trying to be negative but it wasn’t worth the way I felt and the hair loss.

Ok, well I have not experienced hair loss with this, but that could have happened in regular menopause too.

She then continued:

We all do what we feel is right for us. I would really like “them”  to come up with something else. I opt for living also, doesn’t mean Tamoxifen is the answer.

Sweet Jesus.  This woman took herself off cancer meds without telling her doctors or discussing it with them first.  Sorry but that is not being your own advocate, that is being a little cray cray and playing Russian roulette with your life.

Then another woman pipes up and said she did it too.  I mean for real?  Sorry, I sound like a strident bitch here, but I think this is unsafe behavior. I mean seriously is this any better than having unsafe sex?

Also, what I have learned is that many of the other drugs given as alternatives (aromatase inhibitors) to Tamoxifen actually can be harder side effects-wise. To each their own, but how can you expect your doctors to do right by you if you come off meds they prescribed secretly?  They are plotting your course of care based upon the fact they think you are taking your meds.

I will freely admit I  just have a really hard time with someone who says they came off a drug not because she discussed it with her doctors but because of among other things stuff she read on the Internet that she did not discuss with her own doctors.

Her excuse seems to be in part that her doctors aren’t spending enough time with her.  Well hello, they aren’t psychic, so they won’t know things are wrong unless you tell them.  And given how overburdened some areas of medecine are that means sometimes you have to get in their face about stuff. Good lord.

This woman (who I am not trying to villify, it is just simply what she is doing scares the crap out of me) said that she did not feel guilty about being her own advocate and doing her own thing.  Had to scratch my head on that one – you are paying for health insurance and treatment so if you want the best for yourself how can you just sort of blithely engage in  risky behavior?

Can I say it again? Sometimes you have to engage your doctors on your own. Oncologists are often overwhelmed. And I’m sorry to sound strident or sound like a bitch but there is it a big difference in my mind between being your own advocate and being a fool. What she did was her choice, but there’s nothing glamorous about it, truthfully it’s irresponsible and high-risk. But it’s her life.  It is not a question of guilt, is a question of being smart about what’s going on with your own body. For this woman’s sake I hope removing herself off the Tamoxifen doesn’t do her more harm than good down the road.

And that my friends has nothing to do with “Big Pharma” and their “power.” It has to do with deviating from a course that is proven to extend the lives of breast cancer patients.  And for what it is worth, one of my friend’s mothers was one of the test patients for Tamoxifen when it was released to market all those years ago.  She is still alive today and kicking – full life no other issues.

I rarely share personal photos but I am today.  A photo of dinner with my sweet man, the love of my life and one of my best friends and her husband.  It was taken Valentine’s weekend.  In spite of it all, what do you see? I see happy people grateful for the gifts God has given them.

And but for the grace of God go all of us.  For me personally, I owe a lot of thanks to some amazing doctors.  Along with God giving me an amazing do over in my life.  So the moral of the story is, as much as I hate taking Tamoxifen some days, I want to live.  I want to live a very long time.  And I will fight for that.

So if you are out there having issues with Tamoxifen or fearing starting it: talk to your doctors.  Don’t just ignore taking it or just take yourself off of it.  Cancer is indeed an exhausting war at times, but you need to fight those battles.  So fight smart and reach for those stars.  They are attainable, trust me.

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wow...so real housewives of them

Reblogged from chestercountyramblings:

Click to visit the original post

"The Scoop on Breasts"? REALLY?

Sorry, this is one of those things that drives me batty: the fact that so many people seem to feel that the only way a woman is sexy is if she supersizes her bust line and does other plastic surgery augmentation. If not that Botox beauty.  Or Juviderm to go.

You name it, a woman isn't beautiful unless she has been sliced and diced and maybe had a glycolic peel or three.

Read more… 213 more words

Lopsided and damn proud of it.
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