color challenged

Posted on October 8, 2011 by carla

Greetings from the land of foggy brained.  Believe it or not I am still tired and this virus/cold thing is leaving my body on I don’t know whose time schedule, certainly not mine. And yes, patience is a virtue I still need to discover more often.

So I was noodling around on breastcancer.org and hit on something about male breast cancer – Dr. Weiss has a whole section for the boys as it were. You forget that sometimes men get this too.

Of course I see this as yet another reason why breast cancer awareness month shouldn’t be so pink….men can get it too – yes lucky women that we are it is more our playground than theirs, but in all fairness everyone thinking pink around the country this month should also fit in info for guys, just saying.  No man wants to be tagged with man boobs and pink rubber bracelet crap either, but they do have breasts and good breast health I am thinking should be universal?  So let’s not become too color challenged. 

Breast Cancer Awareness Month also means lots of products for charity – or so they say.  I wish that companies doing breast cancer awareness month products would put more than the average of ten cents per unit sold of whatever special thing they are selling this month towards breast cancer charities if they are going to do this.  If you are going to do the charity thing, do it for real, not for marketing bumps that lead to a sales pop.

Switching gears, this week I had two things hit local media – the breast cancer article I wrote for Main Line Media News  and the interview with philly.com .  As a result a lot more people know then did before that I am now a breast cancer survivor.  Some of them have come up to me and they naturally bring up the topic (it’s not a secret, after all) , leading with “I’m sorry.”  Ok, you did not cause it so you have nothing to be sorry about.  I did not write about my experience, not do I continue to write about my experience to have a pity party of one – if that is what is translating across, I will have to re-work a lot of things.  I have done this to pay it forward to take the whispers and the secretiveness  and the dirty word aspect out of breast cancer.  It’s not pretty, it does suck, but we can get through it.  I completely accept the fact that thus far I am very, very lucky – and long may that luck continue.  But please, don’t be sorry – shit, literally happens and this is one of those times.  But we have to keep moving forward.

On the flip side there have been a few wagging tongues with a lot to say about my being open about my breast cancer.  Yes, I know about you and shake your heads all you like – this is my life, not yours.  I see no stigma in being a breast cancer survivor and it’s the reality of the world in which we live. 

I will also tell you I am tired enough that it is a marvelous excuse for a nap. 

Catch you all later.

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end of a long week….

Posted on October 7, 2011 by carla

Lordy, I feel like I have been through the mill, but am starting to feel better most definitely.  I have decided being kid sick is more exhausting than working a crazy stressful week in the office.  How is that for perverse?

I just don’t sit still well I suppose.

My chest is clearing and my fever is finally gone.  Still have no voice (just call me squeaky) and a bit of a cough. Ahh yes, now that I am on the mend, they will be starting my Tamoxifen….here we go….

My breast cancer article I wrote for Main Line Media News that was online recently is featured this week in print in their Flair section.  A big thanks to Caroline O’Halloran, the section editor.  I got all verklempt when I saw me in print.

This is also an anniversary of sorts for me today.  At First Friday Main Line exactly a year ago last October, I looked across the street and saw a sweet man talking to another friend of mine – he had come looking for me and to check out the event.  

And it has nothing to do with anything (there is no hidden meaning so search not LOL), but the show Parenthood is using one of my all time favorite songs in its commercial trailers – “Falling Slowly” by Glen Hansard & Marketa Irglova – I am happy to hear it again – I have it on CD and it’s a beautiful song.

Go forth an be, people.

 

 

 

 

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mr. president, please shut up

Posted on October 6, 2011 by carla

Ok I am not in the pink today.  I feel crappy and I am disappointed. Especially  disappointed when it comes to Mr. President, the economy, the sheer state of this country.  Mr. Obama, you have been quite verbose on television this morning, but it sounds a little too much like you are mounting your re-election campaign.  We are in a recession that some say is actually a depression.  Morale? What morale?

You and your administration seem to have a lot to say but zero accountability to what is happening in this country and all the millions of people affected.

Have I lost faith in those who govern us? You betcha’. Let them try to pay for breast cancer and health care, etc on my budget. Yes I am surviving but it shouldn’t be so damn hard. I should feel like I can breathe and enjoy things.

Actions speak louder than words Mr. President.  You came to office promising a lot and touting hope.

I would say hope is in rehab by now. Or living in that tent city in Lakewood, NJ.

When I met Michelle Obama in Ardmore in March 2008, I actually was dumb enough to believe hope was more than a word.  Shame on me.

At least Obama wasn’t wearing a pink tie.

Meanwhile, the world loses a true visionary who put his money where his mouth was: Steve Jobs. R.I.P. Steve Jobs.

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breast cancer vs. amtrak

Posted on October 6, 2011 by carla

WARNING:  The community activist in me may be cutting loose with this post because I still feel crappy, am pissed and am exhausted….exhausted in part thanks to AMTRAK.

While they are running around kissing corporate ass in America and pretending to think pink just for the publicity of it all – they are shipping country music star Martina McBride east on the barftasticaly titled “Pink Together Express so she can get to New York City  to sing for her supper and apparently light the Empire State Building pink so it looks like a giant penis rising above New York City.   (sorry but the building is phallic looking in design no matter how wonderful, so you color it pink and voila! New York has a giant penis)

Pink Together is a saccharine sweet campaign developed by General Mills in their apparent commitment to monster charity Susan G. Komen – because you know there are no other worthy charities out there helping women with breast cancer…..

I guess I should look for pink Cherrios to eat for breakfast?  That indeed would be barftastic.

So what has my skirts in a bunch?  How about the heart stopping squeaking grinding noises that sounded football stadium loud at 2 a.m.?  Did I mention the blaring horns and klieg bright lights?

Yes G. D.  Amtrak! I have been thru breast cancer and sick for a week straight because my immune system is a mess and FINALLY fall asleep to stay asleep and there they are with lights blaring and this ungodly squeaky noise and HORNS. No, I don’t need sleep at all — being woken up at 2 am is JUST PEACHY and puts me SOOO IN THE PINK.

I know with all the rain the tracks have taken a beating, but they should have to tell affected residents when night work will happen.  That way people like me have the option of at least getting ear plugs. 

The reality of the area in which I live is the train tracks cut us in half – all socio-economic levels are affected (I don’t want the mistaken visual of Molly Ringwald in Pretty in Pink living in a shack next to train tracks because here the tracks slice suburbia in two.)  Along with that reality comes the occasional smack you in the face realization that the railroads don’t give a crap about their neighbors. 

From noise and night work that scares the shit out of you when it happens dead in the middle of the night withoout warning, to the random acts of spraying herbicides as a way of “maintaining” their landscape – and they always misdirect the spray killing off gardens with their industrial strength carcinogen-laden sprays (you know how “cancer friendly” sprays like that are, their storm water management plans of flooding neighborhoods rather than dealing with retention basins and improvements to their banks and so on.  In my area they also abandon bridges that cars and people go over every day – the ones around here are scary and it is but for the grace of God that no one has been killed in a bridge accident.  

Hell, a lot of their train stations are not even completely  ADA accessible around here (Ardmore and Paoli at a minimum) I could go on, but I won’t.  I won’t mention the fact that with all the rain the awesome day workers that check the tracks for Amtrak told us that enough of the banks around the tracks were eroding out they were concerned if they weren’t bolstered with heavy rock followed by some storm water management that there could be serious problems – but hell what’s the potential worry of a train derailment in your neighborhood when you have been through breast cancer?

See what happens when you wake up a breast cancer survivor who has been kid sick for a week?  SUPER CRANKY PANTS.

I haven’t slept in a WEEK. I finally fell asleep last night.  But no, there I was wide awake at 2 a.m. damn them.  And today? Today the left breast is throbbing in pain – must be lack of sleep solidarity. Swell.

But hell you all keep flitting through with your dyed pink butterflies. 

No fake pink plastic or rubber trees were harmed with this post but the thought crossed my mind.

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hump day

Posted on October 5, 2011 by carla

Well so I haven’t mentioned poor abused and microwaved left breast for a little bit.  She was having a post-zappage vacation but alas she is having a rashy little issue. 

Yes, and I am so tired of talking about my post radiation skin, but the skin is sensitive yet like leather, and is healing (I have been using my creams still as my radiation oncologist instructed me) yet in the chest/neck zone that was radiated along with the breast area there has sprouted a fresh crop of bumps – very rashy looking.  I am ignoring the itchy part of it.  Just slathered the creams.

The breast itself is looking much less swollen and is starting to deflate to what its new shape will be post lumpectomy.  The jury is still out, but I will tell you what, my scars are really healing nicely.  My surgeon had amazing tiny stitches and the way she did the actual tumor cut on my breast was like a zipper around my left nipple and it is really healing well.  And it’s but a thin flat slightly dark line now where the lymph nodes were extracted.

And my hair is looking better slowly too.  Radiation took its toll there as well.  It changed texture, and I don’t know if that will change or not.  But the radiation definitely made it limp and listless. I  also don’t care what anyone says about only breast cancer chemo makes you lose your hair but during the 7 weeks I had radiation I shed a LOT of hair. I did not go bald like with chemo but I shed and shed and shed.   A LOT more than normal.  The shedding has started to slow down a couple weeks out of radiation.

In other I feel like Methuselah today news, I still have a low-grade fever although main fever is gone.  I am starting to be able to breathe again, but am still all wheezy sneezy and feel like a mucinex ad.  But I am definitely feeling better than I was.  And yes, I know, I really, actually and truly have to rest to get over this.  And yes, I am finally accepting after getting whacked with the sick of it all that my immune system is going to take its own sweet time getting back to normal.

A friend of mine has a friend living in England somewhere who is now living with a diagnosis a few weeks.  But apparently with nationalized healthcare it’s like taking a ticket at the deli counter so she hasn’t been scheduled for surgery yet.  I know nothing about healthcare in the UK and I know I have some British and Irish readers, so if you could weigh in on the comments section I would like to know more.  Because call me crazy, we’re not boiled ham, salami, and provolone sliced thin.

I am trying to return to normal, but I have to tell you, it’s 10 a.m. and I am tired already.  Well I am still not sleeping right since I got sick last week so maybe that has something to do with it. I also have very little voice, so I am not talking much, even to house plants.

And I am going to throw something out there for discussion that has nothing to do with breast cancer.  It falls into the category of “why do women behave this way?”  So there is this chick – she has never met me, yet she seems to feel free to judge me.   What did I or any of the many other people you sit in judgement over ever do to you?   The answer of course is nothing.

Now this Chiquita banana knows exactly who she is and well, a word to the wise my dear: I am less tolerant than ever since dealing with the whole breast cancer of it all.  As opposed to you, I know life is too short for B.S.  And I think being a mean girl is distinctly passé.  Women are meant to be individuals. Not cookie cutter images of one and other.  That kind of stopped with the Brownie uniforms.  So give it up sister, it’s a losing battle.

No fake pink rubber or plastic trees were harmed in the writing of this blog post.

 

 

 

 

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picked up?

Posted on October 4, 2011 by carla

Wow talk about a leading blog post title. (LOL not meant in that way so read on…)

 A little while ago today I noticed  that a week or so ago my article that I wrote for the Main Line Times for Flair that got picked up by The Delco Times also ended up on some AP News page of Penn Live that is up in the Harrisburg/Lehigh Valley area.

O.k., not to sound like a 12-year-old, but how cool is that?  I would apologize, but by now you all know how much I like to write, so it is to me a very positive affirmation that what I write has some purpose and meaning.

I have also received some very positive feedback about the little interview I did with Ashley Nguyen of philly.com (Philadelphia Inquirer/Daily News) for the new Neighbors section – as I said before it is easier writing then being interviewed, much like it is easier being behind the camera lens than in front of it. (Ironically one of the very first things I ever wrote that was published was written for the original Philadelphia Inquirer print “Neighbors” section.)

In other news of the Rialto (did I spell that right?), my fever finally broke a little after 5 pm – I will have to take it easy a couple of more days, but it’s nice to bid adieu to fever head.  My voice is still virtually non-existent and my Nurse Bettys who have kept me in soup the past couple days have cheerfully told me I look like hell.

And because it is breast cancer awareness month, I am going to remind all of you again today that it is NOT about buying pink plastic crap.  I suggest paying it forward.  Something like what my friends did for me – The Driving Miss Daisy List.  Also you can check out good info like my radiation oncologist Marisa Weiss puts out there – Think Pink/Live Green.

 Some other take away?  The world doesn’t stop when you get diagnosed with breast cancer.  It changes, but it doesn’t stop.  And you definitely learn a lot about yourself and others when you begin the journey.  I might be in survivor  status now, but I know my journey is not over, it has just begun.  And slowly, day by day I am learning to really go for the things I want, not just contemplate them.

No pink rubber trees were killed in the creation of this blog post.

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talking to house plants

Posted on October 4, 2011 by carla

O.k. it’s official. I don’t do sick well.  My fever has receded from 101 to 100 and my chest is still croupy but not nearly as pressuretasticly awful as yesterday.   Yes, kid sick and almost talking to house plants. What a combination.

But I don’t have a choice.  It has not even been a month since I finished seven straight weeks of radiation post-surgery, so my body has been on a death march, pardon the pun.  My immune system needs a vacation, only the real world intrudes – people with colds hacking away in public, work, life stress, etc, etc.

This virus has to run its course and I have to make myself rest.  I slept most of this morning.  The past few nights insomnia has been my buddy because even propped up I have been so congested and croupy that I truly haven’t had any uninterrupted sleep, or truthfully much sleep at all.  And of course that combines with my worrying about making up time since I do not get vacation or sick days with my job.  So literally, any time I take has to be made up. But I have now learned the hard way now to take care of my health first.  I have also learned the hard way I could not just go back to normal anything after radiation – I am paying the price for not taking more time for myself to recover.

I was reading a breast cancer blog today of a woman I connected with in New England because of this blog, her blog, and breast cancer.  She did the full chemo tour and is now doing radiation.  I think she is a terrific writer and very honest (and funny as hell).  The blog is tastethefireforyourself/in the mercy seat  .  Today she was talking about her radiation and her hair starting to grow back  and she touched on something else I totally concur with – as she describes it:

If I can just survive ‘Breast Cancer Awareness’ month without strangling someone with a pink ribbon, we’ll all be happy

Oh yes, I get that sentiment.  Rah-rah-rah pink plastic crap seems to be staring at me from every ad in magazines and on T.V.  And a lot of it just bothers me.  And it’s not because I haven’t acknowledged I had breast cancer and am now in the breast cancer survivor category.  It’s because of all the pink crap everyone wants us to buy this month.  And the monster charities like Susan G. Komen irritate me the most.  They seem to want to bathe the world in pink coated crap from plastic rubber bracelets to pink pies.  Even Playboy enterprises are getting in on the dealio according to the Sacramento Bee – after all we can’t have one breasted Playmates can we?  If Playboy really wanted to support women and breast cancer then they should do a pictorial on breast cancer survivors – there are women out there who have been photographed during all stages of treatment. Help with the whole  femininity issues which are very real to any woman who has been treated for breast cancer.  What the heck do women like us have in common with silicon endowed air-brushed surgically enhanced centerfold models and Playmates?  That is not our reality. That is fantasy. Once you have had breast cancer those centerfold gals seem even sillier then they did before we were all sliced and diced.

And again as my fellow bc blogger dropjohn puts it – having breast cancer is not an instant sisterhood with every woman on the planet.  (Read her post The Sisterhood of the Travelling Tumor?) We all have an appreciation of what the other has gone through, but the reality is all of our cancers are different.   So some of this constant breast cancer awareness month stuff is a bit much to handle. 

Ok, ok I get it – my approach might be a bit hard for some women to handle but I also know we aren’t alone in this wishing-it-was-a-little-less-pink-overdose. Education, awareness, proactive breast health education, research, a cure…all important.  But not all of us are so into the color pink.  Some days it’s a little like that terrorist threat alert color level system – only this month we’re ALL pink.

Sorry, I am the virus version of Ms. Cranky Pants today – just not feeling in the pink and have almost talked to house plants I am so tired of feeling crappy.

Unfortunately, my pillow is once again calling my name.

Pink out. (sorry, couldn’t resist)

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you are never too old to NOT want your mother when you are sick…

Posted on October 3, 2011 by carla

I can’t count…but now I can – I have been sick since last Thursday.  Irritating, sad sack, hot eye-lid, fever, coughing up both lungs, swollen glands and sore throat kid sick. That’s just too many days of this crap.

I thought I turned the corner yesterday, but no, come 2 a.m. I was 10 again feeling miserable and wishing my mother was there in the next room (yes seriously, I got hit with that old feeling I feel so awful).

So here I am still home in bed feeling like my teeth with float I have had so many hot liquids. 

And a recent interview I did with a new Philadelphia Inquirer reporter went live today.  It’s funny – I love to write, yet being interviewed is actually hard.  Oh well, let me know what you think.

I am going back to being one with my pillow….and I still wish my mother was in the next room.  What a dork I am some days.  But seriously?  I hate to be repetitive, but I am sick, kid sick and sick of being sick.

Yes I now. More hot fluids, steam to break up congestion to beat the band, and rest. Rest..the hardest thing for me to do.

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we must maintain our sense of humor….

Posted on October 2, 2011 by carla

So went to the medical oncologist at the end of last week for the Great Tamoxifen Chat.  Went over all the side effects, worked our way to hot flashes and then came the “ummm”. 

You see, my medical oncologist is rather gentlemanly for lack of a better description.  So there I sit with my sweet man and my oncologist discussing it all – it is the next five years of my life after all, and well  along came the very quiet comment “it, ummm, may, uhhhh, cause vaginal dryness.”

 Ahh yes a $20 buzz kill phrase, “vaginal dryness.”

 Alas I had already read up on that cheery fact.  And to those who are reading this and are saying “I can’t believe she is talking about those side effects” I say – what? It’s a side effect along with small percentage potential for thrombosis, secondary cancers, hot flashes, etc.  It’s reality.

This drug throws a woman into chemically induced menopause to stop the hormones if you have a hormone driven breast cancer.  It’s not pretty, but I for one don’t want to do this whole thing twice.

Back to the exam room. What the heck to say after such a pronouncement with your guy sitting with you in the exam room…

 “Does that mean I will be hitting up the K-Y Jelly aisle?” I quipped (Sorry, irreverent but what the hell else was I supposed to say? ‘How lovely, pass the crumpets.”)

I think I almost made my oncologist blush.  Poor man.  He gets to talk about all the fun stuff and put up with my sometimes warped sense of humor.  He laughed. (well it was funny, people)

 So here I am on the precipice of the next stage. And I have been sick now for four days straight which really blows.

I am still curled up on the couch in a warm quilt with no desire to move very far.  I am beat and my eyelids still feel heavy and hot. My sweet man has been an awesome nurse – and he bakes bread too.  Too bad  I can’t smell anything….

Ok so maybe this  fatigue and compromised immune system is normal after spending in essence seven weeks in a daily microwave,but may I say again I am tired of feeling like shit? 

Back to sleep with me.  That way maybe I can stop stressing about how I will rally for the office tomorrow. Right now I can’t imagine remaining upright for eight hours straight.  I know all this will pass and eventually this will all be a bunch of memories recorded by a blog, but it’s getting pretty damn boring right now.

Crabbily yours….

 

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frustration station

Posted on September 30, 2011 by carla

I have been sick for two days.  My immune system hasn’t near caught up two weeks post-seven straight weeks of radiation.  I feel like crap.  (There is no way to put that eloquently.)

I have had to take a day  off from work.  I pay my own benefits and don’t get sick days, vacation days, etc.  So of course I am churning because now I have time to make up and I just feel like Sisyphus with the darn rock.  And I got a couple calls from the office.  It’s not that I don’t want to be available per se, the reality is I feel like crap and am exhausted.

I feel like I have been on a giant life treadmill since I received my diagnosis  April 28th combined with the fact that I am one of those people who always worries about what is to be done at work when I am not at the office.  Turning my head off even when I am sick is very hard for me even though I know realistically if I don’t turn my head off and rest I will keep getting sick because face it my body has been through the wars.

On the Today Show this morning they did a makeover on a woman who finished radiation 2 weeks ago.  Lucky girl to have the time off and time for pampering. She deserves it.

Yes today is a grumble fest.  I hate being sick, I hate the fact I am not back to normal yet. And my left breast where they did the surgery and radiation is just throbbing in a dull, yet consistently annoying pain this week.  And my skin is peeling where the radiation was.

And Tamoxifen is coming…..

Calgon take me away.

Peace out…. my pillow is calling my name.

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