holiday season fun: selective media coverage of breast cancer

Deep breath.  I am at bit peeved at this moment in time and it ain’t a Tamoxifen induced mood swing.

I turned on the Today Show and they had Giuliana Rancic who is an E! News correspondent and a reality TV show star on the Today Show post breast cancer surgery.  Apparently she had a double lumpectomy and instead of radiation she is having a double mastectomy.  Because otherwise she wouldn’t have a quality of life with radiation and drugs like Tamoxifen.

Yes that is what she said.

Excuse me?   I had a lumpectomy, seven straight weeks of radiation and have begun my five-year regimen of Tamoxifen.  So that means that I have no quality of life?  Really? Really?   I should be considered as good as dead because I chose the best plan for my individual breast cancer?

I am sorry, but I think the Today Show just sent an irresponsible message.  First rule of breast cancer is every woman’s cancer is different.  What might be treatment for one isn’t treatment for another.

Giulian Rancic has chosen to get a double mastectomy and no radiation or tamoxifen because she still wants to try to have a baby.  She is obsessed with the fruit of her loins and all that.  Why not call it what it is.  Her choice is her decision, and it doesn’t mean my choice was wrong or I have no quality of life (even if the hot flashes right now on Tamoxifen are a real mothertrucker.)

Now the thing is this that I also do not like about this celebrity breast cancer message is Giuliana Rancic is that we never have heard if she was ductal or lobular or whatever.  Now she was undergoing fertility treatments, and with some women monkeying with the hormones could make a difference, even if they were really quick to say Giuliana’s IVF did not cause her breast cancer .   Ok, maybe it didn’t cause it, but can they say beyond a reasonable doubt it did not influence it?  Every woman I know who has done IVF has ended up with not only multiple births but a host of post baby gynecological issues.

Am I less of a woman because I was never able to bear children?  I don’t think so, it just wasn’t Mother Nature or God’s path for me.

And I am upset that the Today Show itself was so irresponsible that it would have Giulian Rancic back on and not temper her breast cancer story with a reminder that every woman’s cancer is different.  It is never so simplistic that a woman just decides to forgo standard treatment and lop off her boobs, and order new ones.

I remember having to weigh other options in my head before I had surgery.  But my options were to be and were determined by what my surgeon Dahlia Sataloff found when she went in and did my lupectomy.  I was blessed with clean nodes and margins, but there was no way in hell I was willing to roll any dice and skip radiation – the seven weeks of treatment I received at Lankenau Hospital under the careful eye of Marisa Weiss.

And I tell you this now if I had lumpectomys in both of my breasts and my nodes and/or margins weren’t squeaky clean I would not skip the radiation just because I was getting a double mastectomy and wanted to have a child.  Because guess what?  You roll that dice the wrong way and you might end up with a child who grows up without a mother when they could have.

Being a mother is not impossible if you can’t physically give birth.  You can have eggs harvested before treatment if you can afford that and have a surrogate.  You can adopt.  You can foster.  You can become involved with a partner who brings kids as part of the equation.  I guess as someone who knew since she was young that she probably would never be able to bear children I made my peace with it.   And figured I had to have enough faith that God had another plan.  So on that level, with this interview this morning I take issue with NBC and the Today Show.

And I am glad that Giliana’s husband has been supportive.  Fortunately for me I don’t need my sweet man on The Today Show to know how amazing he has been.

Breast cancer happens to more than celebrities. And every cancer is different.  I really wish that the media would REMEMBER that every time they salivate to get the celebrity du jour who popped a breast cancer diagnosis on camera.

Giuliana Rancic is also blessed with the money to cover the treatment she wants.  Many women are not so lucky, or they can cover the treatment but then have problems covering other things.  For example, you try to figure out how you are going to get your loved ones Christmas presents after a round of breast cancer.

I am grateful I am alive and know I made the right choices for MY cancer in spite of the fact I hate the hot flashes and funky sleep patterns the Tamoxifen are causing.  If I am very lucky and God is good this is the only time I do this dance with breast cancer.

I feel I have quality of life….after all I have my life.  And you know what?  If my docs want me to have mammograms every six months I will be going.  It’s a small inconvenience considering the alternative.

Celebrities raise the profile of breast cancer.  Their personal decisions are not necessarily the same decisions ordinary women should make.  Women should make the best decisions for themselves in conjunction with their doctors.

I’m not afraid of storms, for I’m learning to sail my ship.
~ Louisa May Alcott

 

 

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…time for a little spirit of the season, perhaps?

It is the season of magic and miracles, so here’s a little visual seasonal cheer to get you all into the Christmas Spirit.   Believing in a little magic of the season is a good thing….and it’s the magic of ordinary days that is the best.  Just ask any breast cancer survivor….

The earth has grown old with its burden of care

But at Christmas it always is young,

The heart of the jewel burns lustrous and fair

And its soul full of music breaks the air,

When the song of angels is sung.”

~ Phillips Brooks (1835-93), American Episcopal Bishop, wrote ‘O Little Town of Bethlehem’.

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sorting a couple of things out…

So my most glaring reminder that Tamoxifen is in my system is for now the hot flashes.  Mind you, I would rather have this as my side effect as opposed to some of the others.

However, these flashes are a bitch. They are wicked. Brief, but wicked.  I feel like a marshmallow in a campfire to which one of my doctors with a delicious sense of humor quipped today “but do you like chocolate and graham crackers?” (Uhh…yes as a matter of fact I love chocolate and graham crackers and perhaps I will be a s’more next Halloween!!)

So my sweet man and I have had our first Thanksgiving.  I just love him, and the quiet time together after all the hustle and bustle of regular life and the break-neck pace of the past few months, it was really special.

What wasn’t so special is where we had dinner – it was just the two of us since friends and family were kind of scattered around, so we decided to have a Thanksgiving date night.

He made reservations at a local restaurant that was so pretty the last time it was opened, and then it closed.  Excited that it was open under new stewardship, he made reservations so we had a special first Thanksgiving in a romantic, country inn setting.

He chose The Farmhouse Bistro at People’s Light and Theater Company in Malvern, PA.  They only reopened at the end of September but were advertising a traditional Thanksgiving meal.  It sounded perfect….too bad it was so disappointing.

Even more disappointing?  The whole dining experience was so not what it should have been that I took the time to write to them to tell them about it first thing this morning.  While I did not expect a response per se the day after Thanksgiving an acknowledgement they received it would have been nice.   I didn’t get one, so here is what I said to them:

We came in yesterday for Thanksgiving.  It was my first Thanksgiving with my boyfriend and my first Thanksgiving after a bout with breast cancer this summer. We found ourselves unusually family free, so we wanted to have a special holiday just the two of us. 

We chose your establishment.  The Farmhouse looked like it would be perfect.

Our experience was memorable all right.

We walked in and were on time for our reservation. We walked into the no-one-greets-the-customer-purgatory.  We stood for 20 minutes and we might as well have been part of the furniture. Then a young and obviously stressed out server noticed us and said someone would be with us shortly.

Then a woman came out from somewhere and did not greet us who had been waiting, but greeted a random female couple who had just walked in and  were overheard to say they were way ahead of their reservation and the hostess woman who still hasn’t greeted US, seats THEM.  They were seated , incidentally, in the lovely room en route to the buffet- in a spacious spot with a pretty view.

Meanwhile the hostess and a server start having a conversation about others to be seated and how the table wasn’t ready that was for us .

And we still stood there like pieces of furniture.

Then the hostess quips to the server that it might help if he told her our name and there was this little corrective debate as to our names being up and highlighted on some computer screen. IMHO this is a conversation one has with employees out of the customer view. It achieves nothing to correct staff in front of customers like misbehaving puppies.

My boyfriend is irritated enough at this point that I could tell he was almost ready to walk. A service bartender notices  us finally and offers  us a drink while we waited – you added it to our bill later, which all things considered you could have and should have thrown us at least a small bone for our inconvenience.

So after having to hear all this side bar conversation about tired servers, tables not ready, whether or not we were walk ins or had a reservation, we were seated (still without ever really being greeted)

While the random female couple who was early for their reservation was seated at a spacious, romantic table with a view, we were seated at a deuce shoved behind a large party in an in between room with a large fireplace.

Your salads were good and so was the turkey and desserts, but my boyfriend tried the salmon and the ham (he is not as much of a turkey fanatic as I am).  The salmon was dried out and like a hockey puck and the ham was a bit dry looking  had no basic condiments even like a grainy mustard available. 

Our waiter was very nice and obviously so overtaxed (he seemed to be picking up the slack of another waiter who seemed on the verge of a breakdown) – he screwed up the wine I asked for (which I did not send back because you could see how much he was running around in multiple rooms.)

So we are 2/3 through our dinner when your staff decides to rearrange and re-purpose the furniture in the room we were in.  Noise, wrenching sounds of banging furniture, cutlery, and loud conversations between employees like you did not have two customers there trying to have Thanksgiving dinner.

I know people in your industry, and have even photographed and reviewed soft and hard restaurant openings. I do not recall the last time I was so irritated by a restaurant experience, let alone took  the time to contact a restaurant post-dining in such a detailed fashion.

Part of me feels badly for complaining, yet part of me feels that in this
economy if people treat themselves to a night out, especially on a holiday, it doesn’t have to be 100%, but it should have been better than what we experienced.  

You have a gem of a location and a very pretty space, and I hope you get it together because nights like we had can close a place.   No one minds paying for a nice dinner when they feel like their patronage matters.  I did not get that feeling.

I am sorry I could not give you raves.

 

My Thanksgiving, dinner aside, was wonderful. I am grateful for having gotten through all I have gotten through this year.  I am with who I want to be with and know I am loved.  So maybe all of you think I am being too picayune with the whole restaurant thing.   I just think customer service is important.  And seriously, if you saw how pretty the place was and had to match that up to the crappy experience you might say something too.

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not so tongue in cheek being thankful

Dear All,

As Thanksgiving approaches I am truly grateful to all the wonderful people in my life. 

Not just my friends, family (which includes my sweet and oh so amazing  man), but I am thankful and grateful to all of you out there whom I have not met who have been part of this journey thus far.  Whether you are just a reader of my sometimes seemingly endless streaming flows of consciousness or know me in real-time, I am appreciative of your support, love, cheering on, and occasional kicks in the ass.

Having popped a breast cancer diagnosis on April 28th, to being at this moment in time cancer free (and may I stay that way forever bless God, knock on wood) , as well as being your 1 6/8 boobed scribe, I count myself the most fortunate of women.

This experience has taught me really have faith in myself and to have courage to move forward and try new things and to go for what I want.  When you are faced with not having life, it is almost indescribable what it does for your personal resolve all in all.

Suffice it to say I will have a lot to be thankful for this coming Thanksgiving Day and you all will be in my thoughts.

I will end this brief post with a quote from Marcel Proust:

“Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom.”

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being thankful

I can’t believe it is almost Thanksgiving.  Life has been such a whirl that the calendar got away from me. 

There are so many things I am thankful for, and tops of the list is being breast cancer free. I am also thankful for the love of my friends and family.

And I have to be a total girl, I am thankful that I no longer have to go to what was my almost sister in law’s .  She is named after a favorite month of the year, but she is anything but representative of that time of year.  She would, however, make an excellent turkey.

My ex had a slightly welcome to bizzare-O-world family.   They were, of course, far superior to us mere mortals so Thanksgiving was interesting from the first year on. 

My first Thanksgiving I was referred to as the “city girl”.  (I did wear brown suede pants so I guess that was unusual or something.)

My second through eighth Thanksgivings always had a similar theme : (1)  criticizing those who were not present (when you are perfect, you can’t help yourself); (2) talking about Thanksgiving when they were little (that was normal even if having a club to “liquidate” a younger sibling was very Dexter of them); (3) asking me to bake and or cook, and then having a weird case of one-upmanship and making duplicates of the things I was asked to provide; (4) making sure photos of my ex’s ex-wife fell out of family photo albums – which was actually a favorite of mine because she had the ugliest wedding dress and worst hair I had ever seen. (and who the hell gets married at sunrise and barefoot in a local park, anyway?)

There were people who would come to Thanksgiving I enjoyed (and have kept in touch with),  but there were some years I found it hard to sit still.   It was hard to sit around a small, dark green living room and make small talk with people some of whom you were sure would cut you to ribbons behind your back if you weren’t there. 

Sorry, but I couldn’t resist — let’s get real — we all have family/in-law/almost family holiday stories, but I just had a fit of giggles thinking about some of these recent past events.  We’ve all had them – you are there and you are thinking you can’t possibly be there, that someone was sure to pop out a closet to tell you that you had been punk’d.

So yes I am thankful on many levels as Thanksgiving approaches….sorry for the trip down memory lane, but seriously, sometimes there are some series of holidays that are so perfectly made for a future sitcom…..I did however, lose my appreciation for a good plaid…..

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the season of giving

Today I got a sweet note from my friend Stevie B.  Yesterday 13 years ago, I introduced her to her husband at another friend’s wedding rehersal dinner.  She made me get all schmoopy when she wrote:

….directly and indirectly you make people’s lives better on so many days and in so many ways.  I love you.  I am grateful to you and for you….Turn your face to the sun today and enjoy the warmth!

I don’t know that I deserve such accolades.  I am just me.  But when I think of the people who inspire me, one of those is my late brother-in-law, Keith Barket who died last December of  peritoneal mesothelioma .  He was one of the most amazing people I ever had the privilege to know and I still can’t find the words adequate enough to describe that.

When I think of my late brother-in-law, I think of this smart, handsome, caring and funny man who loved his friends and family.  There was a genuine goodness about him that you just don’t see in people today.   Having him in our lives was a blessing and a privilege.

Something I only told a couple of people when I first got my diagnosis for breast cancer, there were a couple of days where privately I really struggled.  I was scared, and at moments in time, I am still scared today.   But back then, only a few short months ago, I was sitting in my living room and my mind, well it was racing.  Racing, racing, racing. 

There is  definitely an “oh my God what do I do?” stage when you are diagnosed with breast cancer.   All of a sudden as clear as a bell, I heard his voice in my head (no cracks about hearing voices, please) saying “You’ll be o.k.”   And all of a sudden, it was like I was calm and could think clearly.  It was a very zen moment, and people might not believe I had this whole moment, but I did.  And it made a world of difference.

And so far I am o.k..  And that is a very strange feeling.  I am so lucky in my friends and family…and my family includes my sweet man.   He is one of the greatest gifts I have received in my my life.      Every day is a new gift, a new joy, and keeping the eye on that prize.  But part of this is paying it forward.

So in addition to supporting the very amazing local non-profits in my area for breast cancer like BreastCancer.org and Living Beyond Breast Cancer , in this horrid economy, if you have any charitable giving that can be done consider also The Keith F. Barket Mesothelioma Research Fund at the University of Pittsburgh Cancer Institute (UPCI)

Life and time march on.   I keep paying it forward the best I can.  I hope on some level it makes a difference. 

The sun is shining. Go out and enjoy this beautiful November day when you can.

And Barbara?  Happy Aniversary from one of your bridesmaids xoxo

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what to write,what to write….

Today was a relatively calm day with no hot flashes. (yay!) 

Today is also election day, so did you all vote out there???  I did. 

So….I was asked to write another piece on breast cancer and my experience.   For my sorority magazine.  I was a Gamma Phi Beta …. and the publication is their magazine, The Crescent.

I get 500 words so what do I write about with regard to my breast cancer experience?   Suggestions, anyone?  Should I give a synopsis from diagnosis to present?  Or hone in on something specific?

If I honed in, should I talk about The Driving Miss Daisy of it all?  To pay that forward?

Come on readers, help a gal out….

 

 

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breathe….

Well I am discovering that Tamoxifen does seem to affect my moods.  I seem to be feeling things at a more elevated level as this drug that will live in me for five years settles in. 

Stress seems to ramp up under certain triggers, taking a new form for me: feeling anxious at times even when I know I shouldn’t be.  I also feel the irritation meter occasionally going up when it shouldn’t.

Not that I don’t have times right now when I shouldn’t legitimately feel bitchy, mind you.

And the hot flashes?  Very brief, but they are definitely back.   They are as I experienced them  during radiation.  They feel so bizarre.

And I am craving Nutella.  Yes,  Nutella.   LOL

Of course, I think I need to learn to relax.   Relaxing is not the easiest thing for me. 

I need to learn how to just breathe…..

I have been told by a couple of women I know on Tamoxifen that some of this stuff subsides as your body adjusts to the drug.

But I am alive.  Alive is worth some minor inconveniences, is it not?

Today’s photo is Oogy.  I photographed this amazing dog on Friday night.  His story is a true inspiration. 

 A minor post-script off on a slight tangent?  As you enter the sanctity of the election booth tomorrow in this off-year election, remember….the herd needs culling.

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aftershocks

This weekend I spoke to a cousin of my father’s I had not spoken to in a long time.  My second cousin.   We used to see each other a lot as for a decade we were literally in the same office building.  We did the whole catch-up including the I-spent-my-summer-with-breast-cancer.  It’s never an easy conversation to have, even if you are open about it. 

Then today I was out and when I came home I had a message from my Aunt, my late father’s sister.  She had come across this blog.

Wince.  I had asked another family member at the time I was first diagnosed and planning my surgery and all that good stuff to call her and let her know, because she has three daughters of my generation, and I wanted them to know because we shared a grandmother who was a breast cancer survivor of her day.

My aunt filled in some blanks with my grandmother’s breast cancer.  Grandmom discovered her cancer (if I have the timeline correct) around 1942.  She had a radical mastectomy and was done with breast cancer after that point.  Grandmom lived into her 90’s and it wasn’t a cancer that took her.   She was an amazingly strong woman, my late grandmother.

I also found out that another couple of cousins of my aunt’s (and my late father’s) also had breast cancer, and maybe some of their kids as well, and they would be my generation.  Families get scattered over generations, so these are people I may have met at funerals or a wedding or two, but I don’t know.  But apparently there are some wonky genes skipping around.

I think in some regards it is harder telling people now after all is said and done and I am starting Tamoxifen, which will hopefully be an uneventful chapter in this story.    Even when you are open about having breast cancer it is not exactly a conversation starter, you know?  To some people being realistic yet positive almost sounds glib.  And there is nothing glib about it, but I can’t exactly un-ring the bell and I will be positive.    I am so far, knock on wood, in a very good position as the rest of my life post breast cancer unfolds.

I have been thinking of my father and late brother-in-law a lot recently.    My father is gone six years in a week or so, and my brother-in-law a year close to Christmas.  They were two remarkable men who loved their families and we loved them.

Life is a cycle and a journey.  We just don’t necessarily know all the pieces until they start to unfold.

Life is also a gift we aren’t supposed to squander.  Part of treating life with reverence I think is being honest about how you feel and not being afraid to tell people what you believe in.   

Maybe it’s having had breast cancer, or maybe it’s the Tamoxifen messing with my moods, but I know I am being more direct than usual.  The funny thing is I don’t feel bad about it.  I feel liberated.  I have survived a hell of a lot.  I am not going to make apologies for how I feel about certain things.

I am a different woman today while still being the same person.  Some of you need to get used to that.   And a special thank you to my sweet man – it is quite a gift when someone accepts and loves you for who you are. 

 To be nobody but yourself in a world which is doing its best, night and day, to make you everybody else means to fight the hardest battle which any human being can fight; and never stop fighting.  ~e.e. cummings, 1955

 

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random thoughts on a november evening….

Today’s post is  part random stream of consciousness and part a cross-post of a fellow breast cancer blogger.  It is food for thought indeed as a survivor and like her, I keep hearing annoying new buzz phrases  now like “new normal“.  I suppose it sounds better than “1 6/8 boobed woman” but yet….

And guess what? Realistically once you have a breast cancer diagnosis and even when you become a survivor, normal ain’t what she used to be.   Once you’ve been there, you’ve just been there.

This morning I stood in front of the mirror and checked things out.  My skin is pretty much the same color it was pre-radiation, but well that left breast feels completely different from the right breast – almost heavier and fake by comparison.  And then there are my little blue dots, the tattoos that look like a breast constellation. 

And yesterday…yesterday the random act of  “what if it comes back?”  thoughts.

You can be positive, you can move forward,  and you can take all the steps to change your life for the positive after a life altering experience like breast cancer, but you have to be a realist.   And being a realist is accepting flaws in yourself and being able to accept that every day you might not be zippy peppy.   Being a realist also means questioning buzz phrases like “the new normal”.

We’re not a one size fits all as women.  Our breasts aren’t one size fits all even without breast cancer.  And each breast cancer is different.  So the “new normal” of it all? I concur…find another buzz phrase.

I am alive and grateful to be so.  I have learned a lot about myself and learned to love again.   So I think in a weird way I have grown.   I am hoping in the weird karma of it all the rest of the things I want will fall into place.

Read this post from tastethefireforyourself – she’s a terrific writer and blogger and keeps it real.     

The “new normal”

 
  This  seems to be one of the current buzz phrases around adjusting to one’s life after cancer and, while it may be accurate, it’s a phrase I hate: “the new normal“.

I think the reason I hate it is that to me it seems so much of a brush-off: this is your ‘new normal‘, this is what you’d best adapt to. It doesn’t allow for improvement, it doesn’t offer options, it’s a flat and final statement. It’s asking you to lower your expectations rather than risking the possibly false offering of hope.

It’s also condescending – it assumes the patient either doesn’t remember the last six months (or more!) of slash, poison, and burn or that the patient somehow expects that all that won’t leave a mark on the body. I’m less than a week out of radiation; I haven’t had time to forget, and I’ll carry my scars the rest of my life. I know I’ve been changed, the marks are still clear on my body.

Of course, it’s also true, to some degree – there will be a ‘new normal‘ for the body. How could there not be? Things have changed, it is not as it was before. It’s not something I need my nose rubbed in; it’s not really the most helpful phrase to offer a patient.

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