reminding myself to learn patience

Posted on May 13, 2011 by carla

Some days patience is a virtue I have a hard time discovering….and today? The word of the morning thus far is irritation.   And it’s probably just in my head because I have things to do….but….let’s start at the beginning (and yes it is like I have had may daily cup of French Press but in truth I have not yet)

Anyone who knows me knows I do not let dust grow under my feet – I like to get things done.

So yes, I was first call to my surgeon’s office this morning, but hell, she gave me the date yesterday she could cut the lump out and I want that set in stone.  I also want them to fight for me to get my radiation treatments scheduled closer to me because I am not a lady who lunches, I have to work and am self-supporting.  Six weeks of chemo, five days a week at a site not close to my office might prove to be financial hardship.

When I called the office the voice on the other end of the phone was well,  irritated.  “We just walked in the door, we have no idea what you are talking about.  Our scheduler is not in. We’ll call you back”

Ok, I am trying to be patient and say to myself  they just walked in the door, etc., but on the other hand,  while this is normal to them, there is nothing normal about this to me and I am the breast cancer patient and a new one at that.   I also know that I do have to be my own best advocate and continue being proactive.   I need that for me to survive.

Maybe these office people aren’t necessarily going to love me, I hope they at least like me…but the fact of the matter is while breast cancer is every day at the office on the job for them, there is nothing normal for me about this.  I am like a rabbit with the carrot, dog with the bone: I want that damn appointment she mentioned to me yesterday.  I want to get approved for radiation treatments that are closer to home so I can work and not spend oodles of money on gas or on germ filled Septa trains day in and day out.  After all check out the photo from traffic hell yesterday just getting there…

Good lord people, I have a plan…work with me here.

Ok now that THAT is out of my system, day one of life has begun now that I have a plan…now if I could just get the stuff scheduled today I want to get scheduled today.  I know, I know— there are a bunch of you laughing out there right now at me because patience some days is a virtue I have yet to discover.  Please give a girl a break.  I want this lump out …

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breathe….just breathe

Posted on May 12, 2011 by carla

I can breathe….1 lump 3.5 to 4 cm stage 2 – lumpectomy , maybe node removal depending on what sentinel node shows surgery day.  Tamoxifen   for five years.  I don’t know if I am thrilled about reading the list of side effects however – but what drug doesn’t have a huge list of side effects?

Radiation for 6 weeks, five days a week .

God gave me my birthday present.

I love all of you and these are happy tears of relief flowing down my face.

That  is all for now — I am exhausted.

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hope and fear…and faith in myself.

Posted on May 12, 2011 by carla

Today is a big day.  No getting around it.  I see the surgeon and find out more what is what.  The waiting, as you know, has sucked.

And today I am anxious.  Today the immediate future and my new reality is more planned out. 

Today I am hopeful and fearful.  This is a big deal.  It’s breast cancer. BUT…. millions of women deal with this every day with amazing grace and fortitude, and every day my admiration for the collective known to many a pink warriors grows. 

I also am reminded today of what others have gone through.  I think about my dear friend’s nephew who is now in college, but who has lived a good part of his young life with a really awful cancer – I can’t remember the exact name – maybe it’s in that horrible neuroblastoma category.  He’s a brave kid and I think of everything he went through along with the little girl of another friend of mine who lives out-of-state.  Both these kids dealt with this – showed amazing strength and fortitude in the face of their diseases.  If they can do it, I can do it, right?

And then I met someone new, a young woman who has a roommate still in college who is dealing with Non-Hodgkin’s lymphoma.  He had a surgery to remove a tumor and is about to start chemo and all that good stuff.  And he’s in college and is fighting to keep a normal life.

So right now, I have to be brutally honest with myself – it could be a LOT worse.

Today’s photo is a tiny fir-tree seedling I pass on my walks – it is fighting to grow out of a wall.  It looks so hopeful, sort of the little engine that could, so it is my post photo today.    And it represents hope.  And through faith in ourselves and in whatever higher being we believe in, comes hope.

So people, I just have to stop driving myself and all of you wonky at different times of each day, get on my stiff upper lip and believe.

Easier said then done, yes. But the alternative is simply not acceptable, is it? God hasn’t forsaken me, he’s just given me more to think about.

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women journal…

Posted on May 11, 2011 by carla

I discovered a new blog yesterday – after five years – it’s blogger, Lauren, in truth discovered me first and left me a comment:

i loved reading your blog, here is what i made my mantra…longevity trumps cosmetics…it helped me keep focus. you have a good attitude and keep going strong!

lauren
afterfiveyears.com

Lauren?  Thank you for taking the time to read the scribblings of a total stranger just entering this odd sorority or sisterhood.   You are an inspiration and after I finished reading some of your posts, I had tears running down my face.  I encourage all to read the simple beauty of her words and she gets it….she’s been there.

Let’s face it: women journal.  We talk, we discuss, we journal – it’s how we get through things.  I did it in physical form  when my fiance of 6 1/2 years who was around 8 1/2 years left.   I am not going to rehash all that as most of you got to live it the first time – and last weekend was the anniversary of the great move out. 

On a sunny Saturday last May I went with a moving truck to retrieve the furniture and other things post break up my parents had given me to set up housekeeping as they say – not that I ever did live in that broken down house – in fact, he was with me most of the time – I made an excellent bed and breakfast apparently.  

To this day I don’t know what he was thinking or why (he never said, we never had that conversation – I put the period at the end of my own sentence), but when he left, I felt relief  like no other in this world and like I could finally breathe and be myself.  I know my friends and family also finally breathed.  I changed the locks and began again – moving forward successfully was the only choice I wanted. 

I did not mention the humbling experience of moving day – it wasn’t just me and the movers. Friends from every stage of my life just quietly showed up to support me – it was heart filling my friends are so wonderful.  

That change  was one of the ones which prepared me in an odd way for this I suppose.  Maybe God put me through last year to show me I am strong enough for this year as well as clearing the way for the right person to be in my life.  But still as D-day gets closer I think about the people not here whom I am thinking about and missing today.  

My father will be gone six years this November.  He died of prostate cancer.  My cousin will be gone five years this November – she died a year later on the first anniversary of my father’s death.  She had ovarian cancer.  And then there is my brother-in-law.  He died in December after a less than a month bout with of all things, pleural mesothelioma.    I miss all of them right now, but oddly I keep remembering a quick phone call I got this time last year from my brother-in-law.  He called just for a minute to say hello and see how I was.  “You’ll be o.k.” he said.    I heard his voice in my head this morning and well, it prompted this post and the tears that keep running down my face this morning. Seriously, not eating magic mushrooms – I heard his voice in my head this morning – “You’ll be o.k”.

Yes, yes, really I am o.k.  Please don’t freak out.  Friends of mine, some survivors of other cancers have told me I have to let myself cry when I need to.  I am not wallowing, I am crying and I know the difference. 

Breast cancer is life altering and I want to get through it.  I will get through it. 

Of course, I might drive you all crazy with all the miscellaneous shit I am worrying about and what is running through my brain.

I really hate that I am putting you all through this.  I hate that I am putting my mother and my sister and a particularly awesome and loving man through this.  I know you all tell me to stop it, but I can’t help it.  Through getting this diagnosis of breast cancer I have discovered how much I need all of you. And well, if you know me, that is a hard thing to say, let alone admit.

Along with all the thoughts of what kind of surgery will be recommended and what will I look like come the worries of how this will affect my finances.   I know that you all say hospitals will put you on payment plans, etc., but the fact that I get to test our healthcare system so thoroughly right now doesn’t wrap me in comfort since face it, healthcare in this country is messed up.  

Another thing – the bras I have seen for all types of post- breast cancer surgery? Wow are they ugly.  Do they give you one in the hospital or am I supposed to order them from somewhere?  That is one of those things no one has told me.

I think my sister is going to have to teach me yoga.  Journalling really helps and thus far I am amazed that I feel pretty good about this.  Some friends have told me flat-out that if they were me they would curl up into a ball for a couple of weeks. I just can’t do that.

When things get a little wonky in my head I remember Grandmom – my father’s mother.  She was the oldest survivor of breast cancer I ever knew.  If I remember my timeline correctly, she dealt with it in the 1940’s when treatment barely existed and was barbaric.  She lived into her 90s.  Of course, when I think about this I think of my mother saying “well she was an android”.  Sorry, maybe irreverent, but it totally cracks me up. And after all, my mouth has to come from somewhere.

My head is crowded, my days busy.  I will get through this.  Millions of women far braver than me have gotten through this.  It’s just right now, at some moments in the day, it’s a little daunting.

But God never gives us more than we can handle, right? And most importantly? I feel the love all around me.  And I thank you all.

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mirror, mirror on the wall

Posted on May 10, 2011 by carla

I will preface this post by letting the worry worts know I am not in a dark place in my head.  Truly.

This morning as I walked the dogs past my parents’ old house, a home we loved well, I was struck by the strange path life takes us on.  I believe it is a true statement when people say God never gives you more than you can handle, and yet, I find myself ,more and more contemplative on the topic.  I wonder is it bad form to look up at the sky and say “enough already” ?

I have come to the conclusion that if I have to get a mastectomy I will.  I don’t want this coming back, I want this cancer out of my body so I can get on with life.  Of course I wonder what that will mean for me in reality, as let’s face it, a woman’s self-body image can be a slippery slope of emotions can it not? But when I weigh the pros and cons, well, I can do without boobs or rebuild them.  I can’t do without life.

I have always been a fairly practical person, and a woman’s breasts and hair don’t define her beauty, or shouldn’t, but when faced with the prospect of losing both, even for a while? Well vanity creeps in.  It just does and it just is.

I find myself looking in the mirror and covering one breast, then the other, then both…and just wondering.   I wonder what I will look like if I lose my hair.   I wonder what ugly bras I will have to wear? How much will this hurt? Will the scars be really, really ugly? Will I not be attractive any longer?  And then I return to being me and I say pretty much “f*ck it, I just want this shit out of my body so I can get on with my life.”

And yes, I am scared.  This is scary. No doubt about it.  But just because I am feeling  a little scared about something that is a lot scary doesn’t mean I do not intend to fight like hell.

A friend of mine sent me a link to a website called Surviving Strong – the founder’s story is very moving.  My friend, who is not a breast cancer survivor, said this woman inspires her daily.  I can see why. I also read the story of Diane on Surviving Strong. Very moving.  And I am still scared, though somewhat determined to get through this. Haven’t quite figured it all out yet, one day at a time.

On the Facebook wall of Living Beyond Breast Cancer today they ask the following:

How did your diagnosis restore your faith?

Hmmm. I did not know I had lost my faith.  Have I? Has my faith been tested by this cancer diagnosis? Yes. But have I lost faith? No. 

And so I will move on.

I will end this post with a quote that seems apropos and please keep telling me I can do this:

You must do the things you think you cannot do.

~Eleanor Roosevelt

 

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monday morning scribbles

Posted on May 9, 2011 by carla

I had a wonderful weekend, even if there was pink, pink, and more pink everywhere given that Mother’s Day weekend is the Race for the Cure in Philadelphia. 

Everywhere I went this weekend, I saw women either gearing up for the race or returning from it.  At times it made me quietly emotional since I am but starting this journey.  And seriously, when did breast cancer become the new accessory for women? Wouldn’t a nice Prada or Hermès or Coach bag be more fun???  Two weeks into this and I have had to adjust my thinking to: “who hasn’t had breast cancer?”

OMG, settle down all of you…I am o.k. Yes, yes, I have indeed accepted the fact I have this disease, but still, sometimes I need a quiet brain.  That is the thing with this diagnosis, it creeps into way too many thoughts.  I am beginning to recognize and realize this and am working my way through. 

I find out more later this week about the cancer.  That is a frightening thought even if at this point I just want this shit cut out of my body already.  Yes I keep meeting women who have survived this and I am a fighter too, but still, as I said last week and the week before, it would be much nicer if it was happening to someone else.

More people are finding out my diagnosis and calling, sending notes, etc.  I appreciate all of that.  It is distinctly humbling to know all of you are out there.  It a cushion that will help me through this. 

Over the weekend one of my friends gave me the F-bomb.  Yes my very own F-bomb for my bursts of f-bombing potty mouth. YAY! 

But as I sit here quietly, admiring a perfect spring morning, I think I am pretty o.k. today.  I have to be. My head needs to stay in the game. That is how I will get through.  I am not denying the existence of breast cancer, but you know what? It just can’t have all of me. 

Git R’ Done comes to mind.

Learning to balance work and other activities with all of this is an exercise in patience.  Work is stressful, but you know what?  I have to work.  It would be really nice right now to have the luxury of being able to do nothing right now except deal with this, but I can’t.  I am cutting back the activism and some of my extracurricular activities right now though.  It is somehow not so important right now, LOL.  Except I will tell you I heard those god damned construction workers around the corner at a little before 6 a.m. and I am not cool with that.  A girl needs her beauty sleep.

I will get through this, I know I will. And I know that I have jumped up this schedule and rammed through amounts of tests into two that usually take a couple of weeks at least, but giddeyup I have a life to lead.  Friends, family, a love I adore – I have a life to lead cancer free people.

I will admit I saw something in the news that I find profoundly disturbing – the City of Philadelphia has a disturbing level of radioactive iodine in the water – as in drinking water. A reporter I know, Bill Bender, broke the story.  Needless to say Mayor Michael Nutter hasn’t mentioned one word of it on his Facebook page, and neither has The City of Philadelphia.  I am sure they are waiting for Glenda the Good Witch to wave her magic wand.  Having a known carcinogen in the drinking water would sure be enough for me as a voter to NOT vote for Michael Nutter in the primary on May 17th, don’t know about the rest of you.

(Uhhh ohhh people, look out, I just mixed activism with breast cancer…but hell, Philadelphia has known since 2007 this was an issue.)

I am also obsessed a bit by the fact that in our area the rate of breast cancer in women is 1 in 6.  Why is it 1 in 6????  Inquiring minds need to know. (If you know the answer to that, please post a comment)

O.K. people, it is a glorious day today – enjoy it!

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3 s’s: sleep and stress and sun

Posted on May 6, 2011 by carla

An awesome spring day! Yay!

Well the good news is I really slept last night – just fell asleep – plain old natural, unassisted sleep.  I feel sooooo much better, especially emotionally.  Now if everyone in my world could sleep too I would be even happier.

I am kind of worried about my mother.  She is a delayed reaction person on tough news like this, and now this has come full circle and smacked her in the face.  My mommy is no shrinking violet, but she is my mother and I am worried and I love her.  My family has been through a lot in the past few years.  I love them and I feel really guilty at adding to the stress of my mother and my sister.

And then there is work.  Awesome in the distraction category, not so much fun some days in the stress department.  I am, however,  walking like a fiend to keep my stress levels down and quite frankly it’s good for my ass too. 

Last night after work I went to a political meet and greet of candidates at a local firehouse and it was fun as a bunch of my friends were there and one of them introduced me to a couple more breast cancer survivors that I did not know about.  I am quite frankly beginning to wonder who hasn’t had breast cancer? And there are so many cases where I live that I can’t help but wonder why?  Is it all genetic and in families or is it environmental?

Thank you all for your support and encouragement – one of my friends sent me a hug coupon yesterday which was so awesome.  I am only a week into this and have not even hit the hard part yet, so many thanks for putting up with me.  I am afraid it is a debt I will never ever be able to adequately repay.

I am so lucky to have all of you in my life – I am blessed.

Today is a nice sunny day inside and out.  And remember this Mother’s Day is the Susan G. Komen Race for the Cure in Philadelphia – the 21st go round for this event.

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some days george carlin is just so appropriate…

Posted on May 5, 2011 by carla

The Seven Words – made famous by George Carlin.  Truthfully, the first time I heard this was on a record player in a prep school English or maybe it was history – I don’t know – some teacher played it. Yes, played it in class.

So I was talking to one of my Karens and I said I was worse than George Carlin with the cursing and it has only been a week. 

In honor of my temporary potty mouth, it’s time to pay homage to George Carlin.

Today’s accomplishments include learning to curse in Polish – I have been told that some days you just have to say kurwa mac…. I will sign off still laughing my ass off…

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a week ago today…and other rambling thoughts

Posted on May 5, 2011 by carla

First of all, I slept a little better last night – and I was tired after all those tests yesterday.  Of course I think I also get tired because staying positive can be exhausting….which leads me to the first of my rambling stream of consciousness for the morning.

Some people are fine when I tell them, but some people become immediately depressed or full of drama…and some act like I told them I have a hang nail and it’s back to all about them.

I know, I know, if you are reading this I sound like a major bitch. In this case I am trying not to be, but I finally am getting what other cancer patients have told me whom I have known – about people’s reactions to this news. (Remeber the line about drugs in St. Elmo’s Fire? Where the word “drugs” whispered by very proper people at a dinner party shortly before they find a wasted Rob Lowe on the roof? That is what telling some people is like.)

I made a conscious decision to be open about this as much as I can be, because it’s not the kind of secret I want eating me up from the inside out.

But to those who seem super depressed upon impact?  You are not helping me and quite frankly it’s not happening to you, it is happening to me.  So you all want to know if I am scared?  Hell yes.  Some minutes of the day I am terrified. But it is happening to me god damn it, not someone else.

Do I cry? Yes and often when I least expect it right now – I mean I only found out it was cancer a week ago today, so I am still adjusting to a lot, and my world has turned upside down. 

This sucks people.  Last year I thought was pretty awful, but yes it sucked.  And I also survived.   So somehow I will get through this.  And writing really helps.  Because as much as some of you want to reach out and touch me, depending on what minute of the day it is, I am all talked out at times.   I would say I am sorry, only selfishly I am not.  This whole what is happening to me is life changing, scary as shit, and a million other things rolled into one.   So sometimes now you might just find me unavailable and I hope you understand.

I have to just admit it – I am a woman, these are my breasts and this is cancer. Wow, I always admired the women I met dealing with this – and I have seen a lot of survivors in one place since I have helped a photographer I know photograph the Butterfly Ball which is put on by Living Beyond Breast Cancer.

And now it’s me.  And it’s just wow.  Alice slipped down the rabbit hole, but I want the hell out of it ….one day at a time, I know. 

I have the most amazing support, but some moments of every day I just have A.D.D. by breast cancer and can’t concentrate on anything else and it’s just ….wow…followed by  saying “fuck”.  I have said the F-bomb a lot in the past week.

So as much as I want to comfort all of you, this is happening to me, so realistically I don’t know that I can be that girl you are all used to right now.  I don’t want you all to be in pain because I have this thing to deal with called breast cancer, but you will forgive me please?  It is not that I don’t care, but the reality is I have to care about me right now and take care of me right now.  If you don’t hear back from me right away, don’t assume I am in a crisis – check with another friend.

Most of you are pretty cool with that.  And those notes an e-mails?  They mean the world.  Like one I received last night which is from someone who has known me quite well for a very long time – they said in part:

I am sorry after everything that there is yet another uninvited difficulty with which you now have to cope.

Life was supposed to get easier and I still hope that it will.
First things first, fight like hell.

And the dear friend who wrote this:

 I know this must have been a shocking blow, but I know that you are one of the strongest women I have ever known and I think you are already finding a very meaningful way to work through the next necessary steps by writing about it.  I am certain that will be of help not only to you but to many others who will eventually read your reflections.

A week later…a lot to take in. And some moments I don’t feel so strong ….I feel like the inside of a whoopie pie.

And now for the people trying to sell me shit.  One word: REALLY??  As in do you really think it is helpful to tell me that I should be experiencing natural healing when I have a freaking pac man lump in my breast?  That I am supposed to follow the regimen of some whack who seems to think breast cancer can be cured by iodine???  And for just pennies a day this miracle cure can be mine? And  after this quack of a doctor freaks me out about how much it is going to cost me to fight this, all I have to do is take an iodine pill and allow someone to basically pull this tumor thing in my breast out of my ass?

O.K. deep breath.  I want to think this person is trying to help and well, it is a man, and not all men get this. But jesusfuckingchrist, I believe in proper treatment and I really want to think this is a good egg not someone trying to sell me the emperor’s new clothes.

I am lucky to have some of the best doctors around seeing to my care, and truly a bunch of burning sage ain’t going to make it go away. Nor do I want it to. I am a realist.  I want this shit out.  GONE.

Wow what a ramble this morning.

Thanks for listening all.  I have a life to lead here, so when I get to be too much of a pain in the ass, please tell me.

Love you guys!

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a day of tests

Posted on May 4, 2011 by carla

I am finally home.  Today started early – testing since 9 a.m. this morning. 

First up EKG.   That was a little schmoopy because I saw the woman who has been checking me out of women’s health appointments for years.  She said “oh no – you here because of last time you were here? Give me a hug.”  I have been going to the same people for so long I feel like we’ve all grown up together.

Almost left my watch in the EKG room….

Then chest x-ray – where it got interesting – good interesting.

While being checked into radiology, the woman checking me in told me she was of the Sisterhood of the Boob. I asked her what kind, and she told me invasive lobular as well.

My first milestone – meeting an upbeat survivor with my brand of lump.  And the X-Ray tech was pretty awesome too!

Then I went downstairs to visit the vampires to have blood drawn.  They don’t mind the pet name I have given them, but some of the people waiting looked at me like I had fallen and hit my head…except for the cell phone faux southern belle.

This broad who was far too old to have that color blond hair, had a fake Southern Belle from Hell accent…and a LOUD cell phone addiction. We were all treated to the details of her dermatology appointment and many other salacious details until the nurse told her their was no cell phone use in the lab – she of course bats her eyes and claims she did not know. Guess she missed the GIANT sign saying so?

So post vampire, I grabbed a cup of green tea and hung out in the lobby in between other tests and a quick lunch with a friend.  In the lobby was this Aunt Sally of a man escorting his mother who was telling everyone, I mean everyone, about every person he knew who had died of cancer. 

I wanted to strangle him.

Lunch with one of my girl friends was the perfect way to break all this up….and then it was back for more.

When I got back and was getting ready to go into the MRI suite I ran into one of my other doctors.  I love her and she was the one who pushed me to the breast surgeon and thank god for her.

The last bit of fun was a half hour inside the evil womb, errr I mean MRI.  Full immersion and wow was that close quarters…and that sucker gets hot inside.  I played mental gymnastics to forget I felt like I was inside the evil womb that felt like an easy bake oven after five minutes.

And then it was all over and I am now one step closer to resolution.

Now we only want ONE lump, hear?

Another interesting thing my entire day was everyone telling me how lucky I was I had been able to get into see this surgeon.  Some of the hospital personnel who helped me today told me this woman had helped their family members, so I am taking that as a huge positive – after all, you never hear about the people no one admires, right?

Oh and I got the number to Living Beyond Breast Cancer.

Another day closer people, another day closer….and it finally stopped raining…

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