mixed emotions.

Posted on September 13, 2011 by carla

Today’s the day.  Today is the last day of radiation, and I am definitely once again a mixed salad of breast cancer emotions.

I feel…odd.  It’s been such a long seven weeks and I am in pain right now with the skin stuff and the fatigue is so intense at times I just want to cry.

Yet today is a milestone in treatment, so what the hell is my problem?

As a breast cancer survivor am I feeling my own mortality as grim as that sounds? Because face it, you get breast cancer, and no matter how positive you are, you face that hurdle.

Next is five years of tamoxifen.

Today I am just so over the breast cancer of it all.  And I am ridiculously sensitive.  Case in point: I sent someone a note about a local issue – those who know me also know I do a bit of community activism things every now and again.  Anyway, I had contacted this person about something and was trying to be helpful.  What I got back was to not try to save the world, but to concentrate on my recovery.

Now I know that was well-intentioned because the person does not have a mean bone in their body.  But still, it hurt.  Why it hurt is simple – when I was contacting them I felt well normal for the first time in a while – like me  – all this breast cancer stuff was out of my head,  temporarily.

I am obviously going to be a silly puddle today.

Please bear with me.

Until later.

 

 

 

 

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yes miss scarlett, tomorrow is another day (one more to go!)

Posted on September 12, 2011 by carla

Tomorrow is a milestone in my breast cancer treatment.

Tomorrow is my last day of radiation.  Mind you the creams and skin issues will probably be a good month longer. I had some skin degradation show up over the weekend that was painful and icky.

Right now I am so tired I can barely keep my eyes open.

So there, Miss Scarlett.  Even ordinary gals like me can do this…not just Andrea Mitchell.

So many emotions today….

 

 

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andrea mitchell is not the only one with breast cancer

Posted on September 10, 2011 by carla

 

 

A Saturday shout out for the media hyping up Andrea Mitchell’s breast cancer.   Cancer has a very public face and yet is a very personal, private, and individualized battle.

BREAKING NEWS FLASH TO MEDIA:  She is not the only one and I can’t escape that annoyed feeling every time you talk about her cancer like she is the only one.  Look around, there are millions of us.

And if y’all did your homework, yes the NATIONAL average is 1 in 8 women.  But if you live in PA, NJ or DE the average is 1 in 6 women.  And if you live in my part of Montgomery County, PA supposedly we are even higher than what I can only call a cancer corridor statistic.

So yes, Andrea, much like you I am part of a statistic.  I am also public about my cancer.

But unlike you, a major corporation is not paying my health insurance premiums, I am.  Personally, as an individual. Unlike you I don’t make a GIANT salary as a cushion to the health insurance.

Like you, I have remained pretty positive throughout this ordeal. 

Kudos to you  Andrea for coming forward with your cancer, but please remember you aren’t the only one.

Nor are you the only one who has worked throughout surgery and treatment, Andrea.  The only difference is I am one of the ones who had no choice.   I have to work or I don’t get paid and then I can’t pay my bills. Small employers don’t fall under a lot of stuff, including FMLA (Family Medical Leave Act).

It’s always good when the disease gets a new high-profile face because it helps raise awareness.  But I will also ask you, Andrea Mitchell, to NOT merely support mega charities with high overhead like Susan G. Komen.  Look to BreastCancer.org and Living Beyond Breast Cancer.

Susan G. Komen is a machine.  Sometimes the machines aren’t so accessible or helpful to the average Jane American going through breast cancer.

And yes, Andrea I spent MY summer vacation being treated for breast cancer.  Mine showed up because I have proactive doctors – my cancer did NOT show up on “routine” screenings like yours.  It showed nothing abnormal, although the lump was there. 

So  if you want to use your celebrity to other than mention Susan G. Komen’s Race for the Cure then use it to get women access to better screenings and better education for starters — not just the baseline mammograms, but breast MRIs, breast ultrasounds and most importantly get us access to the new Siemens machine.  3D Breast Tomosynthesis by Siemens is already live in Europe.

We need it here. 

After all, as Americans we pay for first class healthcare yet because health insurers and pharmaceutical companies are allowed to play games, we truly do not have access to all we need.  And if you are a breast cancer gal from testing to prescriptive creams to being able to get drugs that are new therapies, you KNOW this is true.

If I did not have doctors who PUSHED for me to get additional testing my cancer would have continued to grow, because it’s lovely lobular self showed up as a lump that registered nothing on the richter scale of breast cancer, and I was born with lumpy, dense breasts.  I thank God for these doctors of mine, who will now guide me through Tamoxifen, which scares the crap out of me because I keep meeting as many people who had side effects including secondary cancers as those who had virtually no side effects.

And Andrea, we all know that while prognosis is so much better on many types of breast cancer, the reality is not all breast cancers are curable – every case is as different as every woman who finds it in her body and is treated.

Ok, off the soapbox and taking a walk.

 

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TWO…count ’em TWO left! (and remembering 9/11)

Posted on September 9, 2011 by carla

Two left….dog tired and also had a sick dog today too…so I had another $350 bill to add to the land of fun.  I am so tired right now I can barely keep my eyes open.

Coming home from radiation, we passed a big ol’ bus from The Brotherhood Ride en route to NYC for the 10th anniversary of 9/11.  Being so wound up in breast cancer I forgot what else was on the calendar in two days.  The Brotherhood Ride bus is my photo today in honor of what our first responders do, and what they gave up for NYC, the Pentagon, etc. As we passed the bus/motorcoach we saw an honor guard of sorts – some of our volunteer fire fighters with their trucks on the side streets – a visual salute as The Brotherhood Ride went by in my opinion.  Very moving.

Do you remember where you were when the twin towers came down?  I do.  I told New York Magazine as part of a 9/11 survey a few years ago – Tears just started to run down my face as I sat in my car in my then suburban office garage – I knew. In 1993, I was working on Wall Street as a sales/trading  assistant for a muni bond house called Gabriele Hueglin & Cashman (then part of  what was at that time Tucker Anthony), and I had just walked out of the World Trade Center shopping concourse with my office friend, Deidre, and we were headed back to the office from our lunch hour.  All the memories of THAT day — the eerie stillness right after the noise (which at first we didn’t know what had happened – it was so fast) , the ashes that looked like snow came flooding back. As soon as the news broke I said to myself “oh no, they came back to finish 1993.”

From 1993 I remember the ground shook.  We were standing out in front of the World Trade Center facing Century 21.  The ground shook, and then there was an eery stillness and dead silence.  And then one by one like weird church bells, car alarms went off.   We went back to our office at 44 Wall not knowing what had happened.  We soon found out.

I wrote a column for a local paper in 2006 at the 5th anniversary of 9/11 and I am sharing that now via this link. (unfortunately I have discovered sometimes SCRIBD and wordpress don’t interact well)  We’re a long time dead, people, remember that.  And remind me as I fight the next inner battle with myself over Tamoxifen.  I am scared of the drug and scared of the alternative.

But the upshot is two days after the 10th anniversary of 9/11 I have a personal milestone – the end of radiation.  Wow. I am a survivor.

And a note to President Obama: stop playing games with the American people. Pretty words and a wordy jobs bill and a lil’ kumbaya ain’t fixing the economy.  And you need to get back to some of those pretty words about healthcare and health insurance in this country.  Your speech made me nauseous.

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THREE left!!! (32 down)

Posted on September 8, 2011 by carla

Yippeekiyay!  Three zaps left and my left breast says not a moment too soon since I have redefined red is the new black.

Three left.

Wow.

It has been so long, yet it has been so fast.    And I have survived.  I am definitely stronger, and mayhap a little wiser. 

Now if I could just stop hurting and itching.  The stabbing pains through the surgical site sucks and my body is soaking up the creams like a sponge.  I will also admit I am antsy once again about the next stage – Tamoxifen.  Especially since completely by accident I heard today from a woman who had BC, a modified radical mastectomy (say THAT three times fast), went on Tamoxifen and ended up with a hysterectomy for endometrial cancer.  For every four tales I hear of no problem, I hear of horror stories like that.  But then I contemplate the alternative if I do not take Tamoxifen and feel a wee bit stuck…

In other news, the photo today is of IDIOT-1.  Kind of like AIR FORCE 1 for the Infiniti-ly more important in this world.  This jackass left their giant white refrigerator of an SUV  parked a good five feet out from the wall in this parking space, which means that it was sticking out 3-4 feet into the turning lane of a very tight garage.  It is also up for debate as to if theat person was actually IN radiation.  You see Lankenau Hospital where I am getting radiation has a problem with people who park in the “Radiation Patient ONLY” parking.  It’s a new spin on people without handicap placards who park in handicap spots because they are too self-important or lazy to park legally.

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meet a horse’s ass

Posted on September 8, 2011 by carla

So….one of the things I have discovered is when you have a talent for P.R. placement and good relationships with  the media  people often want you to help them with their projects.  Depending on who it is and what it is for, yes I will pay it forward – the theory being it’s good Karma.

However, that being said there are people I believe take advantage of the good nature of others.   They go back to the well time and again, and never once do they ever offer in return, say to pay you for a placement or offer you a subsequent freelance photo gig where you might earn a couple bucks, or to do something really nice for  a non-profit you help out with. (or whatever- they just don’t do the pay it forward thing unless it absolutely benefits them and their needs)

I know a few of these flora and freebie fauna.  Yesterday someone whom I had not quite placed in this category although who can be exceedingly pushy (and that is being polite) really crawled up my nerves.  I would name him by name except it would embarass his lovely wife who was my neighbor before he appeared on the scene and that would not be fair.  So I slept on it and decided to write about it, because when I said no to him in a polite private Facebook message, he dragged my cancer into it on a public Facebook wall which is totally UN-cool.

I might be public about my cancer, but it is my story to tell and even when you live in the public moment by being open about breast cancer, it is still something very private to deal with and disclose which is why it is my story to tell. Not his to announce. For this guy to have the “ooopsy ” moment and say “oh I thought the whole conversation was private”  when he posted what he posted on a community Facebook wall I find  a little too cute and convenient for words.

So here’s how it went down – I get this message:

can you pls post/forward to families in the area – THX, D-

Jr. & Adult Indoor Tennis Season is here – starts next weekend – at [blank] – Saturdays at [blank], Sundays at [blank]. Classes for ages 4 and up, including teen/adult group. For youngest players, QuickStart Jr. Tennis – smaller nets, smaller racquets, special balls. We make tennis fun, and our kids learn! For flyer/regist. form – Contact D-  …

Mind you this is a business for him – one of several he has going on since he retired from a  municipal government on a full pension. 

Truthfully, until my diagnosis I would always (at a minimum) forward to my lists (which include media) things like this.  Then after dealing with time constraints due to multiple medical appointments, surgery, recovery, radiation treatment, working full-time, having a life, having side effects and pain and fatigue from surgery and treatment, and the fatigue that is just sometimes emotional at moments because dealing with a cancer (even with a good prognosis) is hard I decided I could no longer just do the bulk of this stuff  for….well…FREE.   (Holy run on sentence, Batgirl…sorry..)

Anyway, most people understood because you could never say I wasn’t generous with my time.  But back when this whole breast cancer journey started this guy contacted me and asked me to basically cross-promote to all my contacts for free his summer concert series.  At that time I did not disclose my breast cancer but merely said I could no longer do these things for free, that I would be happy to do it for a small fee.  What I got back was a message full of umbrage that I basically had some nerve that this was easy to do.

Well of course, it’s easy, but here he is making money off his retirement businesses and has a retirement pension from a municipality.  For the first few years he did the series I gave him benefit of free publicity and took photos gratis.  So here I am facing mountains of health related bills and realizing that I can’t sap all my energy and talent doing things for free any longer at this point and that I really need to be compensated for some of this that used to be done for free and not just sap my energy and time, and I got a lil’ attitude.  And I let it go. 

But when he came back to the well this time, I said no, and said why.  In a private message.   Even my 10-year-old niece and a few retired friends who are older than he is know what a private message is on Facebook.  Here is the message I sent back:

No  I can’t. I am undergoing treatment for breast cancer and that is where my focus is. I am sorry

One would assume that was the end of it and that even someone self-focused  could understand I could no longer be Bessie the Freebie Cow, right?

Ahhhh…. not so simple.  Later in the day, I stopped by a community Facebook page a friend does and commented on a post this guy made about community resources (he left a couple out. )  We go back and forth a couple of times on the topic on this public wall and all of a sudden he says (in part):

first, I’m sorry to hear of your illness, and – I hope you’re getting good medical care

Really???? WTF?  Good thing I am being open about the big C – so I respond:

 ….and secondly — good thing I am being open about my breast cancer since I sent that to you in a private message off the wall of  [XYZ]. (Just FYI in case you were unaware of Facebook etiquette) I am fortunate as I have amazing doctors. Basically among the best at what they do. Thanks.

One would think that was the end of it, right?

Nope.

Then he posts on my wall .  Hello??? What was that I said about Facebook etiquette which would have been to  send a private message, or better yet send me an e-mail since he knows it and say “gosh I am so sorry – be well” (or whatever).  He says on my wall:

lucky indeed – I didn’t know it went to everyone – I thought you it was a private message, both ways – d.

So I responded:

a private message is distinctly different from posting on a wall. In the future you might want to check before you post as someday you will really piss someone off if you are not careful. Some of my friends are a bit annoyed with you right now just reading this exchange. Women are very protective of other women going thru treatment.

Now that does seem to be the end of it, but I decided this was worth mentioning because I feel quite strongly this is something you do not do to a woman going through breast cancer treatment….or anyone dealing with a disease that can be difficult.   After all what if I wasn’t being open about my cancer?  What then?  Oh yes, loads of people would have found out in a way  I did not choose, and face it when you have breast cancer, it is YOUR damn story to tell in your own way and in your own time.

This move was purely horse’s ass and I hope this old dog learns some new tricks from it.

And remember, Bessie The Freebie Cow doesn’t live here any more.  Don’t mess with breast cancer survivors, either.  We go through a lot and have a much lower tolerance for bullshit as a result. So avoid the mouth – don’t be an ass to a breast cancer gal.  We’ve had enough to deal with.

In other news this morning,   Andrea Mitchell the reporter announce yesterday she has breast cancer . I am sure mega charities like Susan G. Komen will try to snatch her up.  I hope she picks more education based charities like www.Breastcancer.org to support.

Peace out people.  See y’all after rads.  After today 3 left….

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31 one down only 4 more to go…

Posted on September 7, 2011 by carla

Another one done.  Went back to original radiation machine today as the spanking new TrueBeam wasn’t working right or something—which has to drive the hospital crazy since they just put it in, but hey things with computers in them are after all, things with computers in them.

I am tired, red,sore, itchy, tired, red, sore, itchy, more tired.  I am so tired I did not sleep right last night either and I hate, hate, hate that.  I did manage to work all day besides and now I could just fall over I am so beat.  And my left nipple hurts like a mother you know what – and it is a very odd shade of dark brown.

I feel fried and fricasseed.  I am so tired I just accidentally deleted part of this post.

I am also crabby because someone who could damn well afford to pay me to promote some of their business activities asked me again to in essence promote  stuff for free.  I am not Bessie the Freebie Cow, after all.  Their time is money and valuable?  So is mine. Besides I have breast cancer treatment to pay for.

Switching gears and back to the boob of it all …..In response to something Living Beyond Breast Cancer wrote on their Facebook wall about  “What are some tips that you may offer to a woman who is living in fear of recurrence?”

So…  Living Beyond Breast Cancer:  As I reach the end of radiation , I get women feeling that way but don’t understand it.  You have to be as positive as possible. How would I feel if it (breast cancer) came back? I don’t know. I am hoping I won’t have to deal with that but I will tell you what – breast cancer has taught me to enjoy and celebrate life, not live in a state of perpetual fear that merely saps your energy and good mojo.

Mind you some of the “tips” were amusing.  Like the people obsessed with exercise – exercise alone won’t prevent recurrence.  It is part of the whole body approach though – but then again I met that woman who told me I only had to eat asparagus and should just stop radiation.

What the hell do I know?  I must have some degree of faith in myself, my body, my treatments, my doctors and God.  I don’t pretend to have all the answers but I do know I have the will and fight in me to live.

Is this going to be one of these zen like posts?  I don’t know.  I am just me, people.  In search of keeping myself whole, feeling blessed by my friends, family and super supportive sweet man.

Some say we can’t fight fate, others say we create our own fate.  Perhaps in reality, the truth lies somewhere in the middle.

 

 

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30 down, 5 to go. did not know it was possible to be so tired

Posted on September 6, 2011 by carla

Five more radiation sessions left to go.  It’s been a long seven weeks, people.

I am just cranky.  It’s raining (again) and I am so tired I can barely think.  I am also in a state of sore and red and hot to the touch skin.

I hate it.  This does hurt. See photo below (the derelict farm building I photographed this weekend merely looks as worn out as I feel…).  You will notice what looks like a black mole.  It’s not, it’s a radiation tattoo.  I actually responded to a HARO query from a reporter  doing a story on radiation tattoos.  But because I was not flipping out about the dots I imagine that is why I never heard a thing .

I don’t know if you can see the red bumpy rash but I hope you call all see how RED this is.  in this case, red=sore and I also get shooting pains through the breast right now.  All perfectly normal even if it feels like crapola.

The tired thing is really stunning to me still.  I am trying to take care of myself and I still can’t believe how tired I am.

Dr. Weiss says I am doing well, so I can’t imagine what not doing well is truthfully.  Five more to go seems like it will take forever.

And I must harp on the whole femininity issue.  This stuff just does it to you.

A final word is a shout out to random people who ask me if I can get pregnant since I have had radiation.  Seriously?  Not only is it really none of your business, the truth is that ship sailed a long time ago.  I can’t have kids. If you need to know the burning response to that question I suggest asking a radiation oncologist.

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another one bites the dust (29 down, 6 to go)

Posted on September 2, 2011 by carla

Today I went over to the TrueBeam machine to start the super targeted electron radiation sessions.  Very cool machine – very high tech (http://www.variantruebeam.com/)

Also had my first ex sighting since he took the walk of walks.  It was a very odd, detached experience.  Felt nothing, wondered why I spent 8 1/2 years with him.  His sideburns were very 1974.

6 to go!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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28 down and 7 to go…

Posted on September 1, 2011 by carla

I am dog tired…pardon the pun.  So this will be brief.  Another one done. 

Met a clown in the waiting room. 

Last zapping is September 13th.   I will be ringing that darn bell sometime after 11:15 a.m.

Nap time.

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