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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my tired is tired….

Posted on June 21, 2011 by carla

Oy vey what a long day!  Office then off to meet the radiation oncologist.  Totally dig her and much like my gyno and breast surgeon, she wears fab shoes – yes – yes I  love shoes…I think I have mentioned that.

Anyway it was a good and hopefully get to know one and other productive session even if I left the office without retrieving all of the copies of my films on CD.

Yes another day done in the seemingly unending saga of Breast Cancer Mardi Gras.  

A couple of things about today.  First of all I met yet another new nurse.  Really nice lady but we had some extra stuff to go over because she couldn’t read my handwriting on some of those forms.  No, she did not ask me about my sex life (that’s just for the forms, apparently), but she did seem to ask quite a few questions about alcohol intake. 

I am sorry but I am not in any of the specific boozoriffic categories, I told her.  I had not had any wine since before my surgery and I had one glass on Friday night and in the end it upset my stomach.  I don’t drink beer, am allergic to red wine and most hard liquors, so I am basically pretty boring.  I might have a couple of glasses of wine a weekend for a couple of months and then have nothing alcoholic at all for a few months after that – there is no rhyme nor reason – but that seems to confuse some medical professionals.

I was amused to meet another doctor who seemed to have a quizzical “is she always like this” look on her face until she was with me a bit.  Sorry docs, I am someone who is just on until they are off.

Humor moment came when we were discussing smelling and supplements.  I have to divorce myself from a lot of supplements during radiation (which is SEVEN weeks NOT six, damn it all), and in the course of that we were talking about my whey shakes and the doctor said something about giving up my whey and having kale.  I asked as in fresh kale for breakfast?  I know I made a face because as much as I love breakfast, I am not having kale for breakfast. Sorry but yuck.  Other humor was my smell obsession – apparently I don’t wear anything but corn starch during treatment.  Ummm….really? Doctor says well when the time comes, if it doesn’t work we can talk about other things. (Yes, please)

But after I left the radiation oncologist it was like someone let me hit a wall.  I felt light-headed, exhausted and between my bruised tail bone and the boob and my throbbing head ache, I am ready for a spa day or something I think and I don’t even regularly spa. (and someone should send my friend Linda on a spa day for continuing to drive Ms. Daisy’s ass around so she is not alone for these appointments )

They should let women in this country just be able to go through breast cancer treatment and not worry about everything, you know?  Like switching it up to mostly organic foods.  It’s damn expensive around here.

When I came home a mysterious box was waiting for me. From Charleston, South Carolina.  I am looking at it and looking at it and thinking I know I did not order anything so I opened it and it was basically this cool box full of tea, honey, grits,hot pepper jelly, SC rice, and other goodies including these bits of goodness called Benne Wafers (which are totally addictive they are so good). And I make sweet tea southern style and now I have the proper tea!

As I dig through the box wondering who knew me that well to send me stuff I just loved (and I do love things Southern – the foods of the Carolinas are yummy)…so I come across a note on beautiful informals from a woman I reconnected with on Facebook who is one of my oldest friends.  She had seen this blog and sent me a goody box.

To my first Karen, thank you.  I was so tired and out of sorts when I came home even if I did get to go to this appointment with one of the dearest women and best pairs of ears…and once again, my friends have lifted me up.

And then there are the others who just check in – one of my oldest and dearest guy friends in the world called to say hey today,another one of my gals, who caught me up on some local issues, and another old and dear friend who gave me this bag just full of books to read, another who sent me treats after surgery and spent part of her weekend in town to visit her dad with me –  these people as well, created a diversion, making me think  of life outside this blasted breast cancer.  All of my friends leave me feeling incredibly blessed, so how can I not stay positive? (o.k. yes, yes, I have these moments, but thanks to my personal support team they are just that– moments)

Yes I know, soon I will be set for the balance of my treatment and through it, but right now, every crack oozes something breast cancerish.

So yes, my tired is tired, but another day is done…and yo’, I know there are some editors as in newspapers and magazines out there who are reading this blog and I gotta’ tell you, you people know I can write so why not give me a column?  I think I would make a divine syndicated columnist, don’t you?

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more things breast cancer…and a little shawn colvin

Posted on June 20, 2011 by carla

I did my best to manage my stress today and actually ended the day feeling more productive than it began.   I am still having swelling and pain as my darn surgical sites heal, and can I mention for a change I am tired of smelling?  Sorry, but it is summer and I am trying the combo of mineral stick thingy and all natural no frills no fun smells deoderant…and well I feel odoriferous….and lordy, I need to get my hair cut but am not budgeted for that right now, so seriously? I feel like a shaggy odoriferous dog at some moments of every day right now….breast cancer truly some days or some moments of every day can beat the femininity right out of you.

My mother got sticker shock for me the other day when she was telling me about Banana Republic or some similar store having great deals on summer clothing.  I told her thanks but it wasn’t in the budget right now due to the costs I actually know I have coming up with my Breast Cancer Mardi Gras.  She was floored by the out-of-pocket I would have on a daily basis with just radiation treatments alone.  Which of course brings me around to something I want to say. (Insurance companies cover your eyes and ears, you won’t like this)

People in this country want to wax poetic about Obamacare as in healthcare reform.  I think it’s hooey and I also feel that while both political parties in this country want to beat their collective breasts (pardon the pun) in Washington D.C. no one seems to really want to get down to it.  We need reform of the insurance companies as well.  Not just healthcare as a huge thing – but the companies themselves.  

We as women pay through the ass most of our lives for health insurance.  But when you actually have to use your benefits for something like breast cancer you see where the flaws in the system are.  The out-of-pocket costs, the stress over approvals and pre-certs and even getting meds and treatments covered can be a field of very active land mines. We as women deserve better.   For example – do any of you know about the technology that Siemens would like to launch in this country?  3D mammography?  I hear it is in Europe now so why can’t we have access to it?  I mean what if I listened to those bullshit reports from 2008 where that Federal panel recommended fewer mammograms?  I could be dead if I listened to  something like that or was forced to listen to something like that! And at 47 with a hormone driven  cancer that does not show up necessarily as cancer on traditional mammography, don’t I deserve the best treatment possible? When is the last time any of you ladies reading this contacted your elected officials and demanded better breast treatment to say the least?  And what of those of you fools some of whom I know who do not even get routine mammograms?  Quit being depressed for me and get a mammogram!

(Ok, off the soapbox now darling, she said to herself….)

I completely forgot to tell everyone that I recently became acquainted with a couple of  people associated with BreastCancer.org , which was founded by Marisa Weiss, a renown breast cancer oncologist who practices in the Philadelphia, PA area.

It started out that I was going to go check something out they were doing to further my knowledge base in dealing with breast cancer, and the dates were mixed up so I just ended up meeting a couple of people involved with the non-profit.  Now everyone knows I think LBBC is awesome, but seriously?  These people rock out loud too!!!  I have to tell you meeting people from BreastCancer.org made me feel so much better…even in my moments of being a mopey breast cancerrific pain in the ass. 

BreastCancer.org has some terrific resources – their message boards have taught me about other creams women can use during radiation – you see there are a lot of women like me who have insurance companies which will not pay for ANY radiation creams, believe it or not.

They also have an increased focus on green and organic living and nutritional topics for breast cancer gals.  I like that.  They have a section I discovered over the weekend called Think Pink/Live Green.

Marisa Weiss, the founder of this charity is a breast cancer survivor herself.

I am selective about promoting non-profit events, but BreastCancer.org is doing one I think I am going to hope I have the money to attend because it features one of my most favorite female performers: Shawn Colvin  – it’s on Friday October 21, 2011 at World Cafe Live in Philadelphia. It’s called Rock the Ribbon.

By now, some of you who don’t know me as well as others know I love music – and a lot of different genres.  I am especially fond of musicians who have lyrics and music which just speak to me.  Two artists that do so and feed my soul are Carly Simon and Shawn Colvin.  For some reason they are women who have songs that have marked different periods of my life. (and sometimes quite profoundly)

Anyway, many thanks to my gal pals.  You really helped get me through today.  I told the woman from BreastCancer.org that I had a female support network very à la  Samantha Jones gets Breast Cancer from the last season of Sex and The City.   Seriously…I really do…thanks ladies…love you all.

Big day tomorrow.  I meet my radiation oncologist for the first time.  I am a little anxious I must admit….one foot in front of the other…one day at a time….

Love comforteth like sunshine after rain…

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blah monday

Posted on June 20, 2011 by carla

Yes, blah. I feel blah.  My hormones are running amok.  It’s also humid outside and my breast hurts.  Generally speaking, I feel like crap, I don’t feel well,  and  today damn it all, I feel like crying. So I might.

Mondays mean I have to figure out another way to survive the work week.  My job is stressful, and I can’t escape the mistrust I feel towards what I feel I am going through in the workplace.

A friend I know has parents who own a business.  When their administrative person was diagnosed with breast cancer they in essence gave her almost a year off to get through her disease and heal.  Unfortunately people like that are the exception and not the rule.  And for them to do that for an admin was amazing.

Weekends I am buoyed with the support and love of my friends, family, and sweet man.    That helps so much.  If only the Monday through Friday of it all would even out.

I am discovering that dealing with aspects of life around breast cancer is more difficult than dealing with the cancer.

Not trying to be a sad sack, but the 411 in reality is that I did not ask for this disease to visit me.  It sucks, it happened, and I am trying to navigate my way through it.

But I do think that people are sexist when it comes to disease.  Men, oh if men have something, it’s yeah team, rally round the bully boy.  Not so much for women. 

Griping over and I will now get on with my day.

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