deflated is NOT defeated

Posted on June 29, 2011 by carla

Well, I received another reply from another publication asking me to write something in their prescribed guidelines and it would be reviewed by their editorial staff…so I will!

Now onto the title of this post – the funny thing about going through this is watching the changes in your body as a woman.  Not that the changes are funny as in “ha-ha”, but some days there is this weird sort of detachment as I literally look at things.  Today we have change.

Since my surgery my left breast has been swollen and sore. Sometimes painful.  But all watched over carefully by my docs and healing normally, whatever normal is because I am not quite sure some days. 

So today my 1 7/8 breasts are different.  The left one, where I had the surgery has decided to not be puffy any longer and is starting to deflate.  I found myself looking in the bathroom mirror at it this morning when I got out of the shower and I felt like I was back in 7th grade looking at the frog on the plank waiting to dissect it.

Wowwww…..look at that……it’s different…..it’s like the little balloon that got popped….so far not so dramatically deflated that I will start making pancake jokes to myself, but definitely different.

Still no oncotype back…really, I could do without the chemo.  Pray for the low-end of the scale.  I don’t mean to be a Big Baby, but chemo is a little freaky deaky for me. I will do it if I have to, only I don’t want to…does that make sense? I mean for christ’s sake the idea of glowing like a lightning bug from radiation for seven weeks is enough some days to think about, capice? 

I have a new blogger pal who has a blog titled tastethefireforyourself/ in the mercy seat – she articulates a lot of this much better than I at times.  Read her blog. She’s one cool chick and I think she deserves a shout out.   She is the one who has helped me get through a lot whether she realizes it or not.  Why?  Because her blog is just so damn honest.  She also had the courage to track the changes in her breast from biopsy thru surgery.

Onto other things breast cancer- what does everyone think about the FDA and the stand they have taken on Avastin?  I am a new kid on the block, and would love breast cancer gals to weigh in/and or their loved ones.

See:

CNN: FDA panel rejects arguments for cancer drug

Washington Post: Federal panel says cancer drug Avastin ineffective for breast cancer

Wall Street Journal:  Panel Votes 6-0 That Evidence Doesn’t Back Avastin Benefits

Time: Breast Cancer Survivors Plead With the FDA for Avastin

And other breast cancer news du jour?  Long Island Based breast cancer charity, Coalition Against Breast Cancer is being sued.   The State of New York says something like $9 million solicited in donations wasn’t really spent on “the cause”?  You know what?  There are a lot of great charities that actually DO help women, so look at them.  Don’t be turned off to breast cancer charities due to this story.

Final note?  I found that Women’s Day Magazine online has a spot from October 2010 that links to a few more breast cancer blogs.

Ok my peeps, my peeps…over and out.

 

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editorial commentary about my writing…my first rejection

Posted on June 29, 2011 by carla

So I have been submitting my writing samples to different publications.  I decided what the hell, I will submit this blog to a few to see what I get.  Here was the first response.  I am not sure that I agree 100% because what this editor does not know about me at this point is that I do write here and there and do get the occasional byline. 

And this isn’t just some random journal.

But I do appreciate the time they took to write to me. 

The funny thing is they interpolate a lot of my writing as angry and I overall I am not angry, but I am frustrated by the ups and downs of dealing with breast cancer in everyday life.  And it’s not so simplistic an issue that it should just be pared down to commentary on healthcare in this area, because it is more complex than that.  But maybe this editor even though a woman doesn’t get where I am coming from because she has never experienced the emotional tsunami that is breast cancer.  Because face it, I didn’t get it until I was in it.

And I will keep at it, because I do know I can write and I have something to offer.  And as for mentors – I actually do have professional writers who are mentors and they tell me (among other things) to write what I know.  This is currently what I know. So I will hone this craft, but I will be true to myself at the same time.  I have to be.  What I have to say is of no use to others if I do not.

Here is the feedback:

 I am going to give you an honest response to the question that you seem to be asking yourself a lot, why no one is paying you to write. 

Keeping a journal is much different than writing for a broader audience. I think you keep a good journal, but it seems more like the kind of thing I would read if I were your friend, or if I were undergoing the same sort of mind-bending, life-upheaving, unimaginable health crisis that you’ve been through. After reading 10 or so entries, I don’t feel as though I know you, personally. I feel as though you are justifiably angry about many things. I feel as though you are probably a brave person and probably doing your damndest to sort out what you’ve been through, emotionally. I feel that you could write a compelling and searing indictment of health care in this area, if you organized your thoughts.

 But as a reader, I don’t know what it is you are trying to say, and that is what makes the content difficult to apply to a diverse readership. I think that you will get the attention and possibly financial rewards you are looking for, when you arrive at that.

 As an editor, I can tell you that most editors are working under the same downsized, stressful conditions as everyone else, and do not have the time to hunt through a blog in search of something they can use. It’s like any other application process. Take a few of your best entries, polish them up to column length, and start submitting them, to newspapers, magazines, whatever. Do some research on the submission process, which varies from organization to organization. (For ex., some require queries, whereas some just want the full article submitted for possible acceptance/rejection). If that gets you nowhere, then you need to go back to your writing, and find a mentor who can give you honest, but constructive feedback. There is no one writing for even our small publications now, who has not gone through this process.

 I wish you continued health and much success.

 

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i will be positive

Posted on June 29, 2011 by carla

With the new day comes new strength and new thoughts.
– Eleanor Roosevelt

I will be positive.  I have my life.  The rest will settle out somehow.  I have put my feelers out to change my job and considering I have at least radiation and possibly chemotherapy ahead of me, some might think I am quackers doing this, but for my sanity, inner peace and health I must.

I receive no benefits, nor proper vacation or sick time.  I am a professional woman and some days I feel like I am in a 19th century sweat shop.

I deserve better.

I will not fear the unknown.  After all, I have now faced cancer. It’s all uphill from there, is it not?

You are never too old to set another goal or to dream a new dream. – C. S. Lewis

Today is June 29th, the Feast of Saints Peter and Paul…also my late father’s birthday.  Happy birthday daddy, we miss you still.  I remember when I was younger, oh so much younger this was the time of year when I had my first trip abroad.  I was outside Strasbourg in a small village called Stutzheim on this day in summer of 1979.  Those memories have lasted this long and were extremely positive.  They will be my inspiration today…along with happy thoughts of a father who was pretty damn cool.

Go forth and smile, people.  It’s never too late to change the world….

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learning to go with the flow

Posted on June 28, 2011 by carla

One of the hardest things about dealing with breast cancer is learning to go with the flow.  But when you are used to being in control of your own life, and suddenly there is a great deal of it in the short term that feels beyond your control, it is very, very difficult.

I am having a hard time some days.  Some days it is a bit of an emotional roller coaster and add to that the additional stresses involved with a very uneven and unpredictable work environment and the stresses of everyday life, well…big deep breaths don’t always cover it.

I know I have to go with the flow , but some days it is easier said then done.

That’s all.  Maybe some of you will understand this, and some of you won’t.  It can’t be helped.

 

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yay! something fun!

Posted on June 27, 2011 by carla

Yes indeedy…today I was notified of something fun and non-breast cancerish. 

I received a note from the folks at epicurious.com about a recipe I submitted to them years ago.  Anyway, the long and short of it is one of my recipes is being considered for possible inclusion in a cookbook! 

How awesome is that?  So fun in a Julie/Julia kind of way!

Yes, yes. I do love to cook.  In my Walter Mitty dream world I would love to have someone say I was like Rachael Ray, Ina Garten and Paula Deen all rolled into one only cuter and have my own show.   I would not use the word tablescapes and my kitchen would not change colors with the season and I would never have theme cocktails.  I would of course, have cool vintage linens and other tableware, and proper wines. (But I digress)

Anyway…just thought I would share something fun and that had absolutely nothing to do with breast cancer.   On that topic I will note Save 2nd Base is talking about on their facebook page a new Style Network Project about you breast cancer survivors.  Not to diminish what younger women face, but what of us ladies in the middle? At least I am hopeful that maybe some day my breast cancer as art idea will sprout and germinate?

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the windy road of life….

Posted on June 27, 2011 by carla

Breast Cancer is one of those things that just opens your eyes.  You re-evaluate even the most mundane things.  But one thing that you really are forced to dwell on are your relationships with other human beings.

I am not super woman, but I like to think that I have pretty much been there for people when they needed a friend, needed a little help, or needed an ear.  You don’t do things for other people because you are keeping a mental score card, but still it is always amusing to see what happens when you suddenly find yourself more vulnerable and in need, so to speak.

I have the friends old and new who are just quite simply amazing.  They just check in and even just say hi.  They don’t judge and seem to get how this thing that has happened has indeed changed me.  Because it has.   After all, how can it not?  These friends don’t get bent out of shape if I don’t surface for a few days and seem to be nesting more and more quiet  for lack of a better description.  They get just get it, and they just get me.

I am fortunate as I have literally lifelong friends and friends  I have made within the last 10 to 15 years who are equally amazing whether male or female.   Take for example,  I have two friends in particular who are dealing with cancer and other diseases who are even more fabulous because they find the time to offer comfort and support, while in the midst of their own battles.  They have taught me that it is o.k. to see the humor and cry when you want to.

Some people I am assuming are just tied up in the drama of their own lives, and I really haven’t heard from them.  At all.  I am trying to not be hurt by it and just be accepting, but some days it’s hard.  Especially since when a couple of these people had tough days where no one would listen, I tried to be there.  But such is life, and you live and literally learn.

Life is like a journey down a country road – some days it is straight and clear and you can see far, far ahead of you and other days, the road is windy and dense in the woods and you can’t see around the next curve.  But we just have to roll with it, don’t we?

Last week I put it out there that I need to change my job because the stress and other things involved in it are not good.   I am amused no end that this post has been read a whole lot, yet no one has commented.   Thunderous silence in fact.  Here’s hoping for the best there….I am not asking for a hand out, only a hand up.    I have referred and connected dozens of people over the years, it doesn’t hurt to do this. 

It’s a crappy economy, yes, I know.  After all four years ago when I became part of a reduction in force of a major corporation who was trimming out anyone and everyone before they became one with another major corporation I learned the realities of looking for work in this country: it’s hard.   And when I became part of this RIF I began to learn how non-supportive my ex was – that became about him, probably because there would be no more fabulous corporate health benefits.

It took almost a year then to find a job and I felt like Alice in Wonderland because I had been a relatively happy camper who was a small cog in a large wheel of corporate America.  And I had been at this company for a decade.  If the economy hadn’t started to tank and all, I would probably still be there.  But this new job now three years old? I pay my own health benefits and there is also a high stress component to it.  And it has always felt uncertain and precarious, not that any job today is especially secure.

And when you look out there as to other opportunities, you realize what a shit hole this country is.  Some days I feel like the US is a third world country with modern conveniences. 

I am a woman who has been on a journey, and I have met each obstacle with as much grace and humor as possible, but I am at a space in my life where I really need to depend on the kindness of others and it’s a little like  walking a tightrope without a net underneath to catch you if you fall.  I realize that this is all part of being a grown up, but some days it’s just a pain in the ass.

I have no idea if I am articulating any of this well at all, and this is just yet more of my flowing stream of consciousness as I go through this phase of my life.

Thanks for stopping by.  Now back to your regularly scheduled programming…

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breast cancer survivor seeks new opportunities

Posted on June 24, 2011 by carla

Well I think since I am through the surgery and my lymph nodes and margins are clean and clear I am some sort of survivor, yes?

Now that I am part of the sisterhood of life-changing events I know that aspects of my life simply have to change. I am being given an opportunity in life here to re-evaluate and re-examine. 

I have come to the conclusion that includes current job o’mine.    I deserve better than I am getting.  I think I also have a lot more to offer.

That being said you all know by now I can write.   I would love someone to give me a column and basically take my voice from this blog national because I think I have something to offer.   If people like Martha Stewart could get syndicated, even write a book why not me?   I am so much more fun!!!

However, if that is not in the cards, I can do things for other people to make them and their businesses shine.  Are you a local non-profit, business , or individual needing a bump in profile?  Need to get noticed? Good ideas, clever copy, and the occasional press release don’t have to break the bank!  Contact me to learn more! I love watching something I place or help create, take form, and come to life on a larger stage! 

In addition my skill sets include digital photography. Need a couple of photos taken quickly? Can’t afford studio prices? Need a private party or non-profit event covered? I’m good, and candid shots in particular are a specialty.  No studio. I shoot, you pay, I give you chip with your photos on it after  I give it a once over and delete bloopers and you print yourself. I am not a wedding or straight architectural photographer – that is a very special discipline, but I do second a professional photographer who occasionally does these things, so I do have access to a road show for that!

And for the practical in you who don’t need creative services and aren’t offering me my dream writing job but need a dynamic individual to run your small to mid-sized office ? I do that now! I am honest, dependable, smart and have a strong work ethic. I pay my own health benefits, can pass background checks and be bonded.  I prefer a flexible schedule right now as I am entering into treatment, but if you want your office run correctly, I am the one for you.  I have the experience you need!

Mind you I would be ideal for one of the breast cancer charities, would I not?

When life gives you lemons people, make lemonade – let what little Alex did be an inspiration, as it is to me!

And a wise friend once said to me that you have to put it out there for people to know you are looking for something.

Here’s hoping all my years of paying it forward will be worth something, although I never did that in the hopes of this.  It’s just a putting positive energy and searching for the kindness of karma.

Pax!

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system victim: they said, they said

Posted on June 23, 2011 by carla

Alrighty, so first call of the day was my surgeon’s office this morning telling me it took ten days for them to get approval for the oncotype from my insurance company.  Of course, then my insurance company tells a different tale.

Somewhere in the middle lies the truth.

So I am in the end approved and I have to wait.  The thing of it is as we all know if I decided to be super slow paying either a co-pay or my health insurance premium they would all have offices hollering at me.  Maybe they don’t get that I am upset and the additional stress I am feeling because now I have to wait another 14 days from receipt of sample (which lab said they did not have yet as of yesterday) to find out my treatment fate.

I am not happy about this.  I have a life, I have emotions I am trying to manage and a whole support circle is on pins and needles for me.

For breast cancer patients, anything over a couple of days for an approval is just too long.  Sorry, but I think it is.

As women we have multi-layered lives we have to organize, so I wish things would move faster.

In other news, since part of my job functions are running a small office, I have to phone in the payroll every month.  So I call up the payroll folks with my numbers all in order and discover that my employer has without telling me removed me as the authorized person to enter payroll and replaced me with himself.  Of course this begs the question why as well as being an egregious insult to my honesty and work ethic which have never been called into question anywhere at any time.  I am quite simply a work horse.  And this doesn’t just affect me but other staff.   

The fun just never stops. I guess when you get breast cancer the trust is gone or something?  But would that be my trust in faith in humanity or theirs in mine?

But I will remain positive.  And I will get through all of this.  Mind you my stress is up there right now, but I will work on that.

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breast cancer patient’s head explodes, film at 11

Posted on June 22, 2011 by carla

Well there I was managing my day, managing my stress, working, minding my own business, and WHAMMO! There it was: supreme irritation enough to make my head explode.

After business hours (i.e. sometime after 5:15 pm EST) the phone rings.  It’s a  guy from the lab doing the oncotyping calling to make sure they have permission to oncotype my mass, tumor, little bastard, whatever you want to call it.

HUH???????? WHAT?????????????

I saw my surgeon June 9th and at that point they told me the little bastard (i.e. tumor, mass, whatever) was going in for oncotyping.

So why am I getting this call on June 22 like the thing hasn’t been sent in yet I ask the poor man on the receiving end of my ire and phone.

Well he did not have an answer for me, only it was ordered yesterday.  And my insurance company approved it today.

O.K. I am going to drop the F-BOMB BIG TIME:  WHAT THE F*CK, PEOPLE????

How is it possible??  Here I am operating under the stressful enough misapprehension that this test would be back this week, worrying about it telling me if I needed chemotherapy in addition to radiation and tamoxifen, and now I find I am not ending the agony, but in fact only beginning it?  And that since the lab does not have the sample from the hospital back yet, the clock will not start until 14 calendar days from when that occurs?

Can I just say what the f*ck again, please? 

Here I am dutifully continuing to flash the rack at $50 a pop – yes, we all know Breast Cancer Mardi Gras only results in only  co-pays not beads, and here I am thinking finally a resolution, and  an end to the dance known as Chemo and Radiation Limbo…but NOOOOOOoooooo, not so. Not so at all.

So the lab tells me my oncotype was approved by my insurance company and I don’t have to pay and it’s a $4100 test, but still why is it I only find out now it’s  just been approved and going in?

Did someone drop the ball?  I mean what the f*ck people?  How are breast cancer gals supposed to get life back to normal when some days we are the only ones who feel like we are being a team player?

Right or wrong my surgeon and oncologist got a call.  I want to know how this happened and why all this time elapsed from when I was told about the test.  I also called that nurse person who is part of my breast benefits with my insurance company.   Did they lose my tumor, mass or little bastard or did it go to the Bahamas for a bit? I mean…WHAT?! Was it at a Tumor Spa having a facial and a sea weed wrap?

Ok yes, my head has exploded but damn it, when you are trying to budget your time and emotional and physical energy and get through this crap, this is just somewhat unfair.  And it’s bullshit.  Here I am thinking I could start whatever treatment shortly, and now I wait…. again.

Ok I am breathing now and I will calm down as that accomplishes nothing, but this is still bullshit.  And now, once again, I wait.

Ok, time to exhale anxiety and anger and fear and time to inhale clarity and peace and replace pain with acceptance that this is out of my control and, yes I have expressed my feelings.

It still doesn’t make this less bullshitty. Tick tock stop screwing with my clock. I  have a life to life damn it all.

Grrrrr…..

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breast cancer as art

Posted on June 21, 2011 by carla

One thing that I wonder about is empowering women pre and post breast cancer surgery.  Before I had my surgery I had considered having a photographer do before and after photos for lack of a better description to help me face any self body image issues.    I didn’t have time, but I know women do it, and I am discovering women who have done this post-surgery.  I am still thinking about it.  

I want to own my life and body image, not run from it.  Breast cancer makes you want to run some days – but where the hell do you run to if you are only running away from yourself?

 And face it , as women it’s a  journey under normal circumstances to learn to love ourselves as we are.   After all, if women could truly deal with who they were, would there be so much plastic surgery in the United States? I mean to each their own, not trying to judge, but still I wonder…

I found a Master’s Thesis from Indiana University concerning part of this – it’s very interesting and you can read it online. It’s by someone named  Jularut Padunchewit

A couple of years ago (and I went Googling to find it) a photographer did just this – self portraits of herself through treatment – her name is Alexandria Avakian.  Check out the article and her photo essay.  I also found this paper from a woman names Susan E. Bell from Bowdoin College in Maine – making art to make sense.  But the photos I saw there were disturbing – and to me, negative.

I have this whole idea, and I am sure it has been done only I can’t find it yet .  Examples of a project  – a self-portrait project even that focuses on the positives – i.e. simply being alive.  Yes, you have to pay homage to the changes in your body and no I am not looking forward to Tamoxifen and radiation and hope my onco type is low and means no chemo….but I digress little monsters…

I am trying to hit each new thing head on.   It’s this weird if I can look at it I can deal with it thing.

Anyway, just a thought.  A kind of my body, myself for breast cancer patients and survivors.   You could build some fabulous openings and gallery openings around this.  I envision this whole big thing say during a breast cancer awareness week, month, whatever.

Oh did I mention I am a hawk about my ideas?  I am.  So if you want to use them, don’t be cheap bastards and poach…pay me. Because if you pinch my ideas you’ll find I will  find you and haunt you.

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