mr. president, please shut up

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 countryMr. 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

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

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?

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

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…

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….

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

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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no, I have not experienced “breast canceropoly”

I feel the need to cross-post a comment  and expand into a post of my own.  This is  in response to another blogger on the Living Beyond Breast Cancer blog.  The post is titled

The Competitive Sport of “Breast Canceropoly”By livingbeyondbc

This entry was written by Randi Rentz. In this piece, Randi vividly describes the competition that lies between women who are diagnosed with various stages of breast cancer. Is there a need for competition in the first place? Is your breast cancer really worse than someone else’s – considering that breast cancer takes a toll on any woman emotional, whether you’re in stage 1 or stage 4.

Do you find yourself to be competitive in spirit, especially when it comes to sports, kids, education, social status or occupation? If so, you haven’t been in competitive company until you’ve participated in the game, “Breast Canceropoly.” What’s that you ask?…..“Breast Canceropoly” for some is a game of luck, strategy and people skills. How can your opponent get an appointment the next day after her diagnosis with a top surgeon while you wait weeks? Can it be she has connections or the luck of the dice? When some women are busy getting appointments with every doctor in town, others take to the internet, and may wait a few days before making any contact in the medical profession. Is that a strategic maneuver; to one-up the opponent?  Maybe.

The people skills element needs to be captured in this game, too. For instance, I was very chatty with people in the radiation waiting room and wanted to measure up to my contemporaries, but deep down, I was quite bloodthirsty with all the other women who were waiting to be nuked. There was a woman who was on my radiation schedule who discussed her weekend hiking in the mountains in the Poconoes.

Hiking? Really?

Hiking? So what?  I talked about shoes, politics, LIFE, my awesome boyfriend.  As in I have a life that is not breast cancer that can be discussed because THAT is reality. Not trying to be a bitch about it, but what is so strange about that?  It was a nice distraction waiting to be zapped to hear about the magic of ordinary days. 

I got excellent care because I listened to my doctors and took charge of what testing I needed to get done and made it happen.  I wasn’t going to wait any longer than I had to when diagnosed – I wanted the shit out of my body.  Yes I am incredibly lucky to have the doctors and surgeon I have and I think that is partially because I learned to stay on top of my own care and find doctors that were right for me. I did not waste my time wondering why whomever had whichever doctor, I did what I had to do to take care of me and learn. (the down side of course were those nights I had dreams of angry pink and red breast cancer surgical illustrations but I lived.) Someone is always going to have another doctor, be richer, be poorer, have better hair,  new car, whatever – that is all part and parcel of the human condition called life in general.

I have met all sorts of survivors and there was no whiff of cancer one-upmanship. I found a rather unique sisterhood.

The problem I have is with the people who feel free to tell me EVERY horror story with tamoxifen, which I am getting ready to start now that I am through radiation.

Every cancer is different and the people who are survivors with whom I have spoken are wise enough to know the difference and say so. I have found amazing and positive support from within my community and circle of friends. (i.e. The Driving Miss Daisy gals, etc) I have purposely stayed away from those who can only dwell in the negative or make it all about them.

I mean I have kooky things happen like people who don’t know me at all who said ridiculous things like I should not do radiation, all I had to do was eat asparagus. Asparagus might be a super food but it’s not the True Beam machine.  Or the guy who pretended to be concerned but wanted in fact to sell me some wacky potion.  And the calls from fake breast cancer charities claiming they would pay my bills if I gave THEM money.  But realistically, I figured some of this would happen when I got diagnosed.  But the one-upmanship? Maybe I am just lucky, but no.

I will note, however, I chose to build my own support network because I found a lot of the support groups I checked out were too negative and I wanted positive.

And maybe, just maybe I got through it o.k. so far because I was willing to be honest and talk about it even in moments of the not so positive.  I also took the time to pay it forward.  Even on days that I still have post radiation where I can barely crawl, let alone walk.   This is not a fun process, but sometimes we just have to grab on and try.  Trying counts.

Incidentally, there were days I did not want to walk or exercise at all but except for a couple of days here and there I tried to do something and meditate (although never trained to do that I gave it and all that visualization stuff a whirl).  You know what? I felt better.  And on the days when I am just a cranky bitch my friends, family, and sweet man cut me enough slack to get it out of my system and then hold me accountable.

I also find it irritating the people who constantly try to sell me pink-themed crap. Rubber bracelets do nothing for me.

Breast cancer is not a solitary event although it is happening to me personally.

We are all different. And I am o.k. with that. And we’re all a long time dead.

 

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NABC (not about breast cancer) – one of my favorite barns….

I love photographing barns…slight obsession truthfully.  Here is one of my favorites from Chester County, PA:

 

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