Posted on March 6, 2012 by carla

Cross-posted from my other blog….I *hate* politics of the uterus

carla's avatarchestercountyramblings

I am going to wade into uncomfortable waters in conservative Chester County.  I found a post on the Phoenixville Patch that is worth discussing.  It is by a woman name Lisa Longo.  Apparently Politics of the Uterus is the key to 2012 politics in the Commonwealth of Pennsylvania.

Here is an excerpt:

Blog: What is the GOP Thinking? And Why Are They in My Uterus?

I have to say, I never expected the GOP to so totally torpedo itself.

How could they have mishandled everything to this extent? First they unleash their extreme caucus, also known as the “tea” “party,” which leads to the birth of the Occupy Movement. Then they decide to take the party right off the cliff by picking a fight with women, and not just any one woman, they made ALL of us angry…

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more of life’s little moments

Posted on March 6, 2012 by carla

We all have little conversations in our mind (if we are honest with ourselves), where we actually say what we are thinking or do things we normally wouldn’t. Not dangerous or crazy things, just things we normally wouldn’t do or might think under normal circumstances were too rude to say.  I call them Walter Mitty life  moments.

Whether it is saying what you feel and consequences be damned to the meanest of mean girls you know at any age, telling someone you work with where they can stick it if they are being a jerk, or even telling that woman who stole your parking space in the grocery store you hope her fat ass falls off (the last is something I have wanted to do several times but never have), you all know in your heart of hearts, you have had that moment in your head.

I have had friends tell me they have had these moments, and some have acted on them.  One friend in particular really wants to act on a moment in her head with regard to tossing out her ex-husband’s things that are still polluting her garage in piles.  Her Walter Mitty moment in her head is the visual of the 20 yard dumpster being placed  in her driveway to fill up with her ex-husband’s stuff and it then being dragged away to a landfill.

I had one partial Walter Mitty moment a week ago when I dropped stuff on the stoop of my ex that I unearthed when sorting through things at home.   My partial moment came with being able to drive down his street and drop the bag on his stoop and feel calm and strong .  The complete moment would have been if I had been able to look him in the eye  and not say a word and have that same rest of the moment I did have.  But I am satisfied with the partial moment I had.

So it’s no secret my now ex-boss left a lot to be desired as I was going through all the appointments leading up to my breast cancer surgery, the time of the surgery itself, and the treatment afterwards.  It is also no secret I had a highly stressful job that could have caused me great harm in the long run if I had stayed.

I chose me and my life and future health over the stress and resigned in February.  What I did not tell you is that as part of my former responsibilities I had to deal with occasional governmental types.  For for years I had to be pleasant and professional to people I felt had zero respect for me or my professional capabilities.   They added tremendously to my stress.  Well today they called me.  I have no idea how they had my cell phone number, but call me they did.  A bunch of them on a speaker phone.

It was a little too Big Brother for me and quite honestly it pissed me off.  I was so annoyed I  asked them if I needed their permission to have breast cancer,  recover from breast cancer, and to move onto another chapter in my life.  They just wanted to see if I wanted to talk to them,  they said.  “Purely voluntary.”  Like an exit interview, only they didn’t pay my paltry salary.

In a pig’s eye.

I told them I made a decision in February and chose my future and my life over stress.  I told them that my doctors told me I might have to reach this decision to change what I was doing to reduce my stress to increase my chances of remaining cancer-free the rest of my life  and reducing my stress levels in general.   This former job of mine gave me high blood pressure. I told them that I was closing the door to this chapter in my life, so no, I would not be available to them.  And truthfully, we have no loose ends with each other.

It was nice to be able to say no, and they had better respect that no.  Because if they don’t respect the no, they don’t respect women who have had or have breast cancer and that will be a *huge* issue.  I did my job and did it well and  they are no longer part of my world.  The other thing is this, none of them were particularly nice to me when they were part of my world, so that is like going to hang out with the mean girls from high school after they were nasty as all get out.  As an adult, you can say “no thank you.”

I don’t think anyone outside survivors and those close to survivors like family and friends realize what a big deal it is when we decide to change our lives to reduce the risk of  recurrence of breast cancer.  Or what a valid fear it is to worry about recurrence.   But I am taking those steps to reduce my risk and I will be damned if I get sucked back in.

I realized this afternoon when I got off that call how much of a right thing I did by making the difficult decision to resign my old job.  I also realized how stressed it actually made me when I  got off the phone and realized just how high my blood pressure was. And where the lump in my breast once was, where the surgeon cut away, well it was throbbing. It hurt.

Today’s take away is I am survivor, hear me roar. Don’t screw with me.

 

 

 

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saying good-bye and coming home again

Posted on March 5, 2012 by carla

It has taken me until today to write this.    Part of this weekend was a lot to process.  More moments in life.  I will start by saying that in fact, you can go home again.  And it was quite nice.

This past weekend was the memorial service for Joanna, the woman I went to grade school and high school with who passed away in January thanks to breast cancer.

It was hard for me to go to this memorial service.  It was hard because of the whole breast cancer of it all.   It is what took Joanna from her life and her family and beautiful children and when I walked into Old Pine Street Church   with my sweet man, feeling my own mortality was not something I could escape and it assailed me head on.  I kept thinking how but for the grace of God, this could have been me, and once again, how strong my affirmation is that I have so much life left to live.

In the pew to my left was one of my oldest friends Lauren and her best friend CeCe, with whom I also went to school both grade school and high school.  Behind us was my old friend Caroline and her sister Martha.  Caroline gave one of the eulogies and it was beautiful.  I had not seen Caroline or Martha since maybe 7th or 8th grade.

They say you can’t go home again, but this past Saturday I did.   It was for a sad reason, but I am glad I did.  And the memorial service was a lovely celebration of Joanna’s life.  For those of us who left her in childhood, we got to know her as an adult through a wonderful video collage of her life.

As I looked around this church it was quite hard at times for me at moments to keep my composure.  My head and heart just raced.  The whole breast cancer thing and what it does to families.  As much as this was a beautiful celebration, I was definitely sad.

But then, as I remembered whom I was sitting next to and how much I loved him, I calmed down enough to look around a second time to see a church full of people from my childhood:  the former children, now adults I used to play with.  Coming to pay their respect to Joanna and her family with their own children.    Also there were a lot of their parents, the parents of my childhood.  Older, grayer, just as dear and as nice as they once were.

As I sat there I could remember whose house I went to for what. I heard, once again, in my memory, the sounds of childhood as I had flashes in my head of visual memories not thought of for many, many years.

I remembered birthday parties and sleep-overs and I swear there was a baby-sitting co-op.  I remembered events at school, the Christmas pageant where we went into St. Peter’s Church in I think white robes.  The book fair where every year I got a book from my favorite children’s author, Marguerite D’Angeli.  Dancing around the  Maypole, weaving the ribbons in and out.  The kids who danced over the clay pipes crossed on the ground.  Picnics in the historic cemetery at St. Peter’s Church (and no it wasn’t scary, it was picnicking among Philadelphia history).  The annual fairs at Head House Square.

And those remembrances bought an odd feeling of peace as surreal as it was to be in a church I had not visited since about the 6th grade filled with people some of whom I also had not seen in that long.

But ours, while not perfect, was a magical kind of childhood, and those days in Society Hill?  More so than not they were very happy days.  It was a very unique place to be a child in the late 1960’s and early 1970’s.  Society Hill was rising like a Phoenix from the ashes and seriously?  Even as a child it was very cool to be living in one the most historic areas of Philadelphia and watching historic preservation in action.

I can still hear the chatter of the reception after Joanna’s memorial service in my head.  And see the kaleidoscope of people from my childhood, all older, and so nice to see them.   Her children are beautiful, her husband so nice.  Her mother I think is very brave.  No parent wants to bury a child, it goes against nature.  I laughed at women my mother knew recounting tales of me as a little kid.  One of the most amusing things is apparently I could say the entire Pledge of Allegiance at two.  I was an early talker. (no comments from the peanut gallery.)

I left feeling very glad I had gone.  I make no pretensions that Joanna was ever my best friend as she wasn’t.  But she was just one of those people I always liked.  We went to many birthday parties together and school together.  She was just a nice child who grew into a nice woman from a nice family. I am sorry I did not know her as an adult except for the passing through on Facebook.

One thing that bothered me about this is I expected more of her classmates from her graduating class in high school (I was the class ahead of her) to take the time to come and pay their respects.  A lot of them are local, or local enough and they have their 30th reunion this year.  But they didn’t.  However, it is very hard for some people to go to funerals and memorial services, so who knows.

I sound like a broken record but it was hard for me to do this.   As someone who has lived the reality of breast cancer, how can it not be?  But it was nice for a few short hours to come home again to my childhood and I owe that to Joanna and her family for making that possible.

Life can be fleeting, friends.  So grab life by the tail and live it to your best ability.

I am fine.   It was just hard.  But seriously, there was a lot of beauty to the morning.  It was a good remembrance of a nice woman who was part of my childhood.  My friend Caroline spoke in her eulogy of things we all had to do as students at St. Peter’s.  There was this thing in particular she remarked on called “Declaration”.  We memorized poems and recited them in front of the school for prizes.  I won one year by memorizing and reciting Annabel Lee by Edgar Allen Poe.  I still have the book somewhere that Miss Barlow presented to me. But that is not the poem lodged in my brain this morning.  But another one, we learned as little children is:

Dreams by Langston Hughes

Hold fast to dreams

For if dreams die

Life is a broken-winged bird

That cannot fly.

Hold fast to dreams

For when dreams go

Life is a barren field

Frozen with snow.

On a personal note, I dream of a time when breast cancer ceases to take good people from us all.

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moments in life

Posted on March 2, 2012 by carla

You figure that as we move forward in life, different things we do have meaning.  We also are put on different paths and some of us are tested.

Breast cancer was definitely a test of everything for me, including faith.  And here I go again starting the appointments to check to see that it’s still gone.  Had blood work and a visit with one of my doctors yesterday.  In a couple of weeks the diagnostic mammograms begin, followed by ultrasounds, return to my surgeon for a check-up, and a breast MRI in May.

And thanks to Tamoxifen they have to watch my uterine lining and other fun stuff which could also mean surgical biopsies of tissue “down there” – hopefully I won’t get a post-op nurse like I did six years ago if it has to happen.   There I was post-op lying on a temporary hospital bed in a day surgery post op room feeling like a pool of jello in pain and this nurse keeps chirping in my ear how I was going to be sore, and then like a stuck broken record she said like a hundred times how I could not have “relations” for a while. I remember thinking at the time that was the LAST thing on my mind and wishing I did not have rubber body parts as I would have loved to have stuffed something in her mouth….but I digress…

Honestly, part of me is a little scared, a little at sixes and sevens.  I have heard from other survivors you hold your breath and then you breathe. And you go on.

It’s as I sit in these follow-up appointments thinking about all the things I have to do, that those damn thoughts creep in: Will I be o.k.?  Will I remain cancer-free? Will I worry the rest of my life? Will God grant me the rest of my life to live and be happy with my sweet man?

Yes, I had a bit of a good cry about this early this morning.    I know all of what I am feeling is normal, but seriously?  I don’t have time for this stuff yet I know if I don’t make the emotional time, it will come back to haunt me.

Tomorrow is also the memorial service for the woman from my childhood who died in January from breast cancer.  As a survivor, you can’t help but think “this could have been me.”

Breathe.

Now you know why my favorite Anna Nalick song is up.

Also in the weird life moments, I have found myself being reconnected to people I knew a long time ago directly and indirectly.  Not creepy people, but really nice people.  It’s like coming full circle.

Karma is just a funny thing, isn’t it?   Take yesterday for example.  I unearthed some stuff belonging to my ex and I decided I should return the things to him.  As opposed to him who did things like refused to give me my girl’s bike when we split, I decided the right thing to do was return them.  I hadn’t been on that street really since the moving van was there (or maybe the dedication ceremony of the PA Historical Marker I got approved in his neighborhood) , and it was weird to just look at what might have been.   I looked at his messy property and ramshackle house (that now has a boat in the back yard, no less!) and felt this enormous sense of relief that I never moved there, never married him.

I am looking forward to my future with my sweet man.  I love him as much as he loves me.  He’s like coming home again, I don’t know how else to describe it.

But in between there are moments.  Damn breast cancer moments.  But I know they are just part and parcel of the moments in life that we have to deal with and accept.

Sometimes life is just like a giant twelve step program, isn’t it? (And no, I am not in recovery, but I appreciate the hard work of those who are).

I am finishing with the Serenity Prayer.  It has been adopted by AA and those in recovery, but in fact it is the work of a theologian who was named Reinhold Niebuhr:

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

 

Truth to power on that, people.

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lankenau hospital business practices and billing (updated)

Posted on February 28, 2012 by carla

UPDATE ON THE UPDATE:

I just spoke with Scott a Supervisor at Lankenau, who was at least honest with me on he had no idea how this happened.  He says he will pull the bill back from collection and put me on a payment plan.  I did ask him why they did not go back to where I was being treated to try to figure out why my mail was undeliverable.  (I mean other than the duh that I haven’t lived there in years and wouldn’t give it as an address?)   So we’ll see.  I told him I was a blogger and I had written about this.

But to me, mistakes like this are inexcusable.  Why ask us as patients to fill out reams and reams of paperwork if you aren’t going to enter the data collected into the system?  Of course this makes me wonder in retrospect if the hospital was even aware of medicine and food allergies I had while being treated, let alone what medications I was on.

This crap leaves me exhausted.

_____________________________________________

UPDATE:  Lankenau Hospital is going to make me tear my hair out in frustration.  I called this morning to speak to the billing office.  They had been sending bills to my parents’ former address. (We all know I am well above the age of majority and oh yes, my parents sold that property they were mailing my hospital bills to circa 1999.)

I was so pissed I did not even notice the address thing until this morning.  It is just a FLUKE one reached me.

I am not a normal patient of this hospital system and never before had medical doctors treat me in this system.   So how they got this address combined with a phone number no one in my family ever had escapes me.  When I became a patient for my cancer treatment I filled out pages and pages and pages of new patient paperwork with all the correct information.   I did not have a back to the future moment and fill anything out with addresses of my childhood.

So the first billing office woman at Lankenau I spoke to was named Roslyn.  In an “oh by the way” moment I discovered that the bill was not $400 but a total of three bills amounting to $1850!  “Send me one bill and a payment plan” I asked.  “I don’t think we can do that” she replied.  I told her if they wanted to get paid they would figure it out.  Then I told her to pull my account back from Financial Recoveries in NJ, the bill collector.  “Oh they work for us. They won’t do anything.”  (Yeah, right)  I then asked her why if bills weren’t getting paid and mail was getting returned WHY they did not go back as a best practice to the area of the hospital treating me to see if they had better intel on a patient.  There was no response to that.  This was half an hour on the phone excluding unhelpful hold and other time.

So next I call Financial Recoveries in Mt. Laurel, NJ.  I speak to a woman named Nicole who laughs when I told her the woman from Lankenau’s billing office said they won’t do anything and that they work for them.   She tells me that Lankenau has been sending them bills for collection since I was an active patient.  And oh yes, as I suspected, LANKENAU needs to pull back the debt to get me off the debt collector list I did not belong on in the first place!

After 20 minutes on the phone with Financial Recoveries I call Dr. Weiss’s office. Asked them what address they have for me.  They also have my parents’ old address.  I ask them how that is possible since I filled out reams of new patient paperwork, they saw I.D. with my address on it, and oh yes, I had paid for office visits not treatment with my correct address so how did the freaking business office screw this up?  They did not have an answer, but they helped me update their records.  That was about 15 or 20 minutes.

Then I had to call back Lankenau’s billing office.  This time I spoke with a woman named Karen.  I told her up front I was white-hot pissed off.  So I told her the whole thing and she tells me about all the bills getting returned – a lot of them while I was an active patient.  O.k. so I still don’t get why they did not ask the part of the hospital treating me to check me for an updated address.   I told her I wanted the bill pulled back from collection and they had to do it to make it happen even if Roslyn said they wouldn’t do anything.  I also told her I wanted one bill and information for a payment plan.  She said she was sending it to a supervisor.  So we’ll see.

I will not pay one red cent until I get everything I need.  There is no reason I should have gone through this.

_______________________________________

ORIGINAL POST:

I am about to test the reach and effect of this blog.  And I will warn you that as I type this post I am white-hot with anger.

I was very proud that I made it through a round of breast cancer without landing ass deep in debt.  I went through all of this as you all well know working a highly stressed job that offered zero benefits, nor vacation, sick, or PTO days.   I am self-pay on insurance.

I was proud that I was able to meet my financial obligation to the medical industry (well it is an industry). The costs as any survivor knows, were significant.

A few weeks ago I thought I had cleared all outstanding debt.  Apparently I did not take into account costs that I was supposed to divine psychically.

I came home today to a debt collection notice from Financial Recoveries at a P.O. Box in Mt. Laurel, NJ on behalf of Lankenau Hospital where I received seven weeks of radiation under the care of the world renown Dr. Marisa Weiss.

Now the bill is not THAT huge, although I will have to go on a payment plan if it is actually due to them. It is $400.00. From an invoice dated 9/1/2011.

But that is NOT the point. The point is that LANKENAU HOSPITAL NEVER SENT ME A GOD DAMNED BILL.

So Lankenau Hospital, this post is for you.  Obviously Lankenau  has my address because this collection agency sent me a bill.  But Lankenau never billed me.  Lankenau never even called me to say I had an outstanding invoice.  So I suggest they get their billing office to send me a detailed invoice and how to get on a payment plan.

I did not shirk my financial responsibility, Lankenau as a hospital system did.  Lankenau shirked their responsibility to me as a consumer and a patient. And now they are attempting to  mess  with my good name and credit rating because of their clerical and billing error.  I worked HARD for that good credit and no one, no breast cancer, no hospital system is going to mess with that.

I am putting Lankenau Hospital on notice to apologize and make this right.  If they do not I will use all recourse available to me to fight them. Including blogging the heck out of this issue.

How DARE Lankenau do this to me and ramp up my stress levels I am trying damn hard to manage.

Lankenau got miles of good press when I wrote an article and was featured in a local paper during breast cancer awareness month.

Good publicity works both ways.  I gave and now, I taketh away.

Shame on Lankenau for using debt collection as a way to rectify their screw-ups.  Truthfully, Lankenau messed up and they should eat this, although I do not know that will happen.

We, as Americans, pay through the nose for healthcare.  Time and again we see the flaws in the system.  This is another one.  These flaws cost us as Americans undue stress and pain.  This is yet another reason why we need healthcare reform.

I’m pissed.    I am going to post this, land it on Twitter and your Facebook page.   And that is just for starters.

I am a survivor, don’t screw with me.

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one lump or two/walk a mile in our bras

Posted on February 27, 2012 by carla

So now that I am in the survivor category and so many have been down this breast cancer road with me, I still get surprised when people question me from time to time on stuff like terminology, etc. I take certain terms and such for granted, because I am the one living this day in and day out.

Yes I had a tumor.  Yes it was rather large, almost too large for stage 2. Yes my breast cancer was hormone driven and invasive lobular.  No I did not lose all my hair because I had 7 weeks of straight radiation -my margins and nodes were clean and my oncotype score was low.  If I had to have had chemo, yes, I would still be looking Susan Powter-like about now on my head.  And yes I am taking tamoxifen and yes the hot flashes and sleep interruption are for real.

And yes, the procedure I had, the lumpectomy ,was also referred to as a partial mastectomy.  I had a significant chunk removed, no matter how neatly and nicely done.

A lumpectomy is a name for a breast conservation surgery.  A breast conservation surgery in plain speaking terms means you aren’t getting it ALL cut off, they are saving part of it.

Allow me to quote breastcancer.org:

Lumpectomy is the removal of the breast tumor (the “lump”) and some of the normal tissue that surrounds it. Lumpectomy is a form of “breast-conserving” or “breast preservation” surgery. There are several names used for breast-conserving surgery: biopsy, lumpectomy, partial mastectomy, re-excision, quadrantectomy, or wedge resection. Technically, a lumpectomy is a partial mastectomy, because part of the breast tissue is removed. But the amount of tissue removed can vary greatly.

All of my doctors, including the founder of  BreastCancer.org  Dr. Marisa Weiss have referred to my surgery as a partial mastectomy and lumpectomy.  Trust me, you don’t screw this up.  And if you are anal like I am, you keep a notebook.

It is easier to keep your head wrapped around this breast cancer thing with the word “lumpectomy”, but some days even now, when I look in the mirror this is hard.  Some days I just feel ugly.  I don’t see the beauty of my survival, I see breasts that now are unbalanced and go in two different directions.  That is my reality post surgery, along with occasional fears of recurrence.  My fear of recurrence is so great if I am being brutally honest that it paid a large factor in my resigning my job so I could reduce my stress, which is a very real factor in recurrence.

I also want to mention something else: if you think I am being hyper-sensitive I very well might be.  The Tamoxifen screws with my body in several ways: new weight gain fears, anxiety, mood swings, sleep loss, hot flashes.  Some days in the self-image department I am not doing so well.

It is really simple to tell a breast cancer survivor on breast cancer meds how to do things and share an opinion, but seriously walk a mile in our bras.  Some days it is a down right pain in the ass.  I just keep putting one foot in front of the other and keep on moving.  My sweet man is my largest champion/cheerleader.  I am so lucky he is in my life.  His love is a blessing, and often when I am “in a mood”, it’s he who gives me that push when I need it.

Have a breast cancer free day all!!! But for the Grace of God go us all.

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b is not just the first letter in “breast cancer”

Posted on February 22, 2012 by carla

Drama is a situation women create themselves, based on jealousy.

And that quote lets you know we’re not in Kansas anymore and tonight’s post is not about breast cancer.  It’s about grown women acting lie prepubescent mean girls.

So once upon a time in a post far, far away I recounted the amusing take of a woman who sent a Facebook message through another woman complaining that she could not see my posts.

Well, duh, lady, they are called “privacy settings” and I choose not to interact.

Apparently that drives some of these Stepfords bat sh*t. Oh yes I almost said the “s” word.  But it’s my blog, is it not?

A lot of these Stepfords congregate on a community board on Facebook that a woman I know is the admin of.   They definitely have issues if you aren’t cookie cutter them.  (So you know they all love me, right?)

I decided to put a link to a post I wrote on a local blog and oh my! The drama. As in D-R-A-M-A.  It was so good I took screen shots of all their comments.  They did not like that I said in my opinion I thought a local business owner was being a little b*tch.  They went on and on and on.  One woman even went so far as to basically say I did not have the right to my opinion.  And then she said “no hard feelings here.”  The funniest part about this woman?  She owns and runs a small indie newspaper that she would not be able to run if it wasn’t for the First Amendment that exists in a free country.

So I get contacted by the board admin who is a lovely woman.  Apparently she came home to an inbox stacked with complaints about my post – a post that is written on a stand-alone community blog that  has nothing to do with this community page on Facebook.   Along with those complaints come repeat complaints that certain people I filter out with my privacy settings can’t see my posts and how that is so unfair. Saying that this is an “honor system and that posts should be available to all members for viewing and comment.”

Wahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. 

Privacy settings and quasi public boards are not mutually exclusive.  Nice to know something on Facebook works.

So what does this woman do?  She deletes the post because all these Stepfords are berating her.  Yes, peer pressure.  Does it every time.

I am highly amused.  But then I can be.  I don’t need any of those women.  I find them pathetic.  Here they are grown women and if they can’t get their own way they throw in essence tantrums until they get their own way?  I guess that must be filed under the First Amendment for selective readership/censorship?

Wow.  I survived breast cancer only to deal with bitches.  Yes I said the “b” word.  All the way out with no little asterisks to soften the blow.  But I have survived breast cancer, so pardon me if I don’t bow to peer pressure and am not afraid to speak my mind.  Not that I was afraid to speak my mind before breast cancer, mind you, because I wasn’t.

I guess all in all this just goes to the nature of some women.  They can only be supportive and friendly if you subscribe to their narrow perception of reality and the universe.  I find that sad, truly I do.  But I wasn’t put on earth to pacify cookie cutters.  I only use cookie cutters for baking.

After an experience like this, it makes me appreciate all the more human beings who are not afraid to be individuals.

O.k. enough fear and loathing in suburbia.  I have important things like Tamoxifen induced hot flashes to get back to.

 

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tamoxifen girl: life marches on

Posted on February 20, 2012 by carla

As I was sitting here finishing up my entry into the 2012 Note & Words Essay Contest  and the phone rang.

It’s one of my gals, and not with happy news.  Added bonus?  Both bits of unhappiness have to do with breast cancer.

First comes the news that a mother of a mutual friend is in the hospital in some coma-like state.  This older lady has metastatic breast cancer.   She fell or something and ended up in the hospital, and it’s pretty grim right now.  This is the woman’s second round with breast cancer.   This is so sad, and her family waits and prays.

Second comes the news that another woman we know has been diagnosed with breast cancer.   My friend doesn’t know if she has been staged yet, or what is going on, and well that freaks me out a bit.  Another woman in my area, in close proximity to me with breast cancer.  What is it about the area in which I live?

And here I am, taking it day by day, one step at a time.   Damn it, will I always fear the specter of breast cancer that always seems to hover not so far away?

I wonder if the emotional roller coaster aspect of breast cancer will ever truly fade, or will it just abate to consistently manageable levels?

I am starting to sleep a little better a little more consistently.  I am not certain if my sleep patterns will be moderately or massively inconsistent throughout my five years of Tamoxifen and chemically induced menopause.  Some days I honestly  feel tired all day long.  And when I go to sleep, I often wake up flashing.  Getting back to sleep from there is not the same, and never really deep enough.

In addition to the hot flashes and sleepus interruptus, there are the inexplicable leg aches.  I don’t know how else to describe it.  On Tamoxifen I am fighting my moods and my darn weight again.  I feel like  such an unattractive blob some days. I met a woman at that event I photographed yesterday who told me her mother was a survivor and had done five years with Tamoxifen.  She said that the first couple of years her mother often did the strip around the house because of the hot flashes.

And oh yes, let us not forget that some days my left breast where the tumor came out just hurts. Not only is it lop-sided, but yep, some days it hurts – little darty aches that are damn annoying.

I understand all of the above is normal, but hell, it still doesn’t feel normal to me.  Nor do I want it to remain normal.  Yes, another common compliant of the breast cancer survivor: new normal is not the old normal and while some of the new normal ain’t bad and we’re all trying to be healthier, this new normal can pretty much suck some days.

I have traveled so far, yet the journey is not yet so old that I can leave it in my rear view mirror.  So when I hear of people dying of breast cancer, and being diagnosed with breast cancer I find myself at emotional sixes and sevens as a result….and that messes with my be positive credo.

Meanwhile, back on the sidelines cheering me on is the most awesome sweet man imaginable.  He and the kid have developed a very amusing soft shoe of dealing with my hot flashes: they literally blow on me.  It makes me giggle.

I just had a hot flash.  It felt like my back was glowing and then my face.  Is this my reward in life for not being particularly crampy?  I haven’t had a period now since October.  I have also had a couple inexplicable allergic reactions to I am not sure what.

What other fun facts do you want to know?  Truthfully, I am a little anxious about the next round of doctors appointments.  I want to NOT have breast cancer again, ya know?

I think this is enough of a flowing stream of consciousness for one day.

Tamoxifen girl out.

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girl power

Posted on February 19, 2012 by carla

Check out a post on my other blog titled girl power.

Making good on my promise to myself to do what brings me pleasure, I had buckets of fun photographing an event today. So this post is not about breast cancer, but it is about life!

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a new journey begins

Posted on February 16, 2012 by carla

Having breast cancer changes you.  Forever.   Irrevocably. Once you have had it once, you don’t want it again, but the reality is if you don’t take care of yourself, you put yourself at increased  risk for recurrence.

I had made no secret since my diagnosis that my career and I no longer suited.   Even though it is a disastrous economy, I was forced to make a decision.  So my sweet man and I made it together.

I resigned.

The stress was reaching levels which were truly untenable to me as well as toxic, and add that to the problems adjusting to Tamoxifen, well I need a break.  Some will think I am completely nutty for doing this, so here’s the 411:  I have never done this in my life.  I decided I owe myself more.

My sweet man is so good to me.   He is giving me the gift of time.  He is so unselfish a human being, some days I wake up and can’t believe how lucky I am.

I left in as professional a manner as possible, but needless to say, it went over like a lead balloon.  (i.e. “you can’t leave”)  But as I said before, having spent too many years prior to my sweet man in a bad relationship, I wasn’t willing to do it any longer on the job front.

I know I made the right decision.  Perhaps if things had been different around the time of my surgery and seven weeks of radiation I might have stayed.   But after four years of self paid benefits,  and increasing levels of stress, I knew in my heart of hearts if I want the best possible chance to remain breast cancer free, this had to happen.  So I cut the cord.  I am worth more than I ever received.

Some may say I am just being selfish, but I prefer to think that I am taking care of myself and trying to put myself first.

I am not the first woman who has had breast cancer to decide to change her life, and I won’t be the last.   Once again, as yet a new journey begins I find myself blessed by the love and support of my sweet man, friends, and family.

I am smiling again.

Merci.

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