more things breast cancer…and a little shawn colvin

Posted on June 20, 2011 by carla

I did my best to manage my stress today and actually ended the day feeling more productive than it began.   I am still having swelling and pain as my darn surgical sites heal, and can I mention for a change I am tired of smelling?  Sorry, but it is summer and I am trying the combo of mineral stick thingy and all natural no frills no fun smells deoderant…and well I feel odoriferous….and lordy, I need to get my hair cut but am not budgeted for that right now, so seriously? I feel like a shaggy odoriferous dog at some moments of every day right now….breast cancer truly some days or some moments of every day can beat the femininity right out of you.

My mother got sticker shock for me the other day when she was telling me about Banana Republic or some similar store having great deals on summer clothing.  I told her thanks but it wasn’t in the budget right now due to the costs I actually know I have coming up with my Breast Cancer Mardi Gras.  She was floored by the out-of-pocket I would have on a daily basis with just radiation treatments alone.  Which of course brings me around to something I want to say. (Insurance companies cover your eyes and ears, you won’t like this)

People in this country want to wax poetic about Obamacare as in healthcare reform.  I think it’s hooey and I also feel that while both political parties in this country want to beat their collective breasts (pardon the pun) in Washington D.C. no one seems to really want to get down to it.  We need reform of the insurance companies as well.  Not just healthcare as a huge thing – but the companies themselves.  

We as women pay through the ass most of our lives for health insurance.  But when you actually have to use your benefits for something like breast cancer you see where the flaws in the system are.  The out-of-pocket costs, the stress over approvals and pre-certs and even getting meds and treatments covered can be a field of very active land mines. We as women deserve better.   For example – do any of you know about the technology that Siemens would like to launch in this country?  3D mammography?  I hear it is in Europe now so why can’t we have access to it?  I mean what if I listened to those bullshit reports from 2008 where that Federal panel recommended fewer mammograms?  I could be dead if I listened to  something like that or was forced to listen to something like that! And at 47 with a hormone driven  cancer that does not show up necessarily as cancer on traditional mammography, don’t I deserve the best treatment possible? When is the last time any of you ladies reading this contacted your elected officials and demanded better breast treatment to say the least?  And what of those of you fools some of whom I know who do not even get routine mammograms?  Quit being depressed for me and get a mammogram!

(Ok, off the soapbox now darling, she said to herself….)

I completely forgot to tell everyone that I recently became acquainted with a couple of  people associated with BreastCancer.org , which was founded by Marisa Weiss, a renown breast cancer oncologist who practices in the Philadelphia, PA area.

It started out that I was going to go check something out they were doing to further my knowledge base in dealing with breast cancer, and the dates were mixed up so I just ended up meeting a couple of people involved with the non-profit.  Now everyone knows I think LBBC is awesome, but seriously?  These people rock out loud too!!!  I have to tell you meeting people from BreastCancer.org made me feel so much better…even in my moments of being a mopey breast cancerrific pain in the ass. 

BreastCancer.org has some terrific resources – their message boards have taught me about other creams women can use during radiation – you see there are a lot of women like me who have insurance companies which will not pay for ANY radiation creams, believe it or not.

They also have an increased focus on green and organic living and nutritional topics for breast cancer gals.  I like that.  They have a section I discovered over the weekend called Think Pink/Live Green.

Marisa Weiss, the founder of this charity is a breast cancer survivor herself.

I am selective about promoting non-profit events, but BreastCancer.org is doing one I think I am going to hope I have the money to attend because it features one of my most favorite female performers: Shawn Colvin  – it’s on Friday October 21, 2011 at World Cafe Live in Philadelphia. It’s called Rock the Ribbon.

By now, some of you who don’t know me as well as others know I love music – and a lot of different genres.  I am especially fond of musicians who have lyrics and music which just speak to me.  Two artists that do so and feed my soul are Carly Simon and Shawn Colvin.  For some reason they are women who have songs that have marked different periods of my life. (and sometimes quite profoundly)

Anyway, many thanks to my gal pals.  You really helped get me through today.  I told the woman from BreastCancer.org that I had a female support network very à la  Samantha Jones gets Breast Cancer from the last season of Sex and The City.   Seriously…I really do…thanks ladies…love you all.

Big day tomorrow.  I meet my radiation oncologist for the first time.  I am a little anxious I must admit….one foot in front of the other…one day at a time….

Love comforteth like sunshine after rain…

Posted in Uncategorized | Tagged , , , , , , , , , , , , , | 3 Comments

blah monday

Posted on June 20, 2011 by carla

Yes, blah. I feel blah.  My hormones are running amok.  It’s also humid outside and my breast hurts.  Generally speaking, I feel like crap, I don’t feel well,  and  today damn it all, I feel like crying. So I might.

Mondays mean I have to figure out another way to survive the work week.  My job is stressful, and I can’t escape the mistrust I feel towards what I feel I am going through in the workplace.

A friend I know has parents who own a business.  When their administrative person was diagnosed with breast cancer they in essence gave her almost a year off to get through her disease and heal.  Unfortunately people like that are the exception and not the rule.  And for them to do that for an admin was amazing.

Weekends I am buoyed with the support and love of my friends, family, and sweet man.    That helps so much.  If only the Monday through Friday of it all would even out.

I am discovering that dealing with aspects of life around breast cancer is more difficult than dealing with the cancer.

Not trying to be a sad sack, but the 411 in reality is that I did not ask for this disease to visit me.  It sucks, it happened, and I am trying to navigate my way through it.

But I do think that people are sexist when it comes to disease.  Men, oh if men have something, it’s yeah team, rally round the bully boy.  Not so much for women. 

Griping over and I will now get on with my day.

Posted in Uncategorized | Tagged , , , | 4 Comments

too much information running through my brain….

Posted on June 17, 2011 by carla

Yep, as I am walking out of the first appointment with my new oncologist, the Police song “Too Much Information” started…you got it, running through my brain.

My friend Linda took me and was my ears…she is awesome.  She was like a big sister to me in high school and back in the day I felt really cool when I got a ride to school with her in her Corvair.

Upon our arrival the waiting room was packed with all ages and stages of life…with cancer and waiting with those who had cancer.  One woman had a gaggle of pals with her like her own personal cheerleading squad and I found that awesome.

So first up was a new nurse to take my vitals.  Really nice woman but she did not ask me what side I was cut on and when she put the BP cuff on my left arm and it started to pump up the volume I thought I was going to hit the ceiling.  So she switched to my right arm and much as I expected after the week I have had and a combination of nerves being jangly for this first appointment and four hours of sleep due mostly to the fact that we had wicked thunderstorms well… my blood pressure was high.

So after waiting a bit my new oncologist came into the exam room.  Very nice, cute, and an awesome smile along with bright, calm and informative — I like him.

We went through all the fun stuff and well…I don’t think he was ready for me.  I might have been a little too zippy, but I was just wired by the time we started talking.

We went over chemo if I need it – it would be four shots three weeks apart, then radiation and tamoxifen. Ok people rub your buddha and dog and cat bellies, I don’t want to lose my hair.

The side effects from all of this crap can just suck no way around it.  But I want to git r’ done, people.

Anther milestone appointment down, another week towards completion finished.

Love all of you and thanks for listening.

Zippy out.

Posted in Uncategorized | Tagged , , , , , | 3 Comments

life as a paperwork pushing mynah bird….

Posted on June 16, 2011 by carla

Really, who knew one person could do SO much paperwork about the same thing?  So I have been swallowed up by paperwork for my medical oncologist and radiation oncologist.  List meds, list surgeries, are you crazy, have you been pregnant, do you like the color purple, do you wear underwear on Saturdays, who are your doctors, etc, etc. 

And then one form asks me how I feel about all this.  Really???  Maybe I should just give them the link to my blog? Yes I love having breast cancer, I adore it, can’t imagine how else to spend my time. (no I did not answer that way but was sorely tempted to do so).

And then there is the question about my sex life.   That one did give me a fit of the giggles though because you feel as if a teeny tiny Dr. Ruth jump off the page at you.  (Besides, don’t they know nice girls don’t kiss and tell?)

But seriously, all this paperwork is amazing.  And a lot of it is so repetitive.  I wish there was like this universal application.

Tomorrow is a big day. First date with the medical oncologist.  Am taking gal pals as ears to give the man a break.   Maybe I will make a party out of these things a la Samantha Jones and Sex In The City. As a matter of fact, TV or not, I liked the way the series handled this.  The humor helps when you are watching the episodes as a “chosen” one.

You know what really floors me right now?  How many people are reading this blog.  And I have to tell any woman going through this that writing about this helps get it out. If you can’t blog, journal.

So I spoke to a psychologist attached to my breast cancer program today.  I figure it’s part of the perks so to speak, might as well see what she had to say.  She seemed pretty cool and remarked at how I was juggling a lot of things.  I had to laugh because…. gee you think?

I also keep hearing other horror stories of being a woman who has to work while undergoing treatment.  I am not alone in my worries and it is so not right.  When things happen to me, it’s a clap on the back and “yeah team, let’s rally”.  But women? Not so much.  It’s astounding.  Any politicians reading this?  Want to stop offering women in the workplace lip service and actually help us?  Whether we work in a large company or small, you get the big C life changes there too.  We should be reducing our stresses, not adding to them.

And in other news I have two other friends dealing with canceriffic issues…so can we remember them in our prayers and positive thinking?  They are awesome ladies!

A friend wrote to me today:

 
“a friend suggested to me this morning to set aside 15 minutes each day to worry, then to visualize putting the worry away in a box, high up a shelf. I really liked that idea. scheduled worrying!! then get on with life….”
 

I like that idea too!  Now can someone make me do this please….

 She went on to say:

“literally acknowledging the worry, accepting the worry, then letting it go. Otherwise it’s utterly debilitating. I took a class on mindful meditation and it’s the same idea. You don’t deny it it’s there, but trying to allow it to be there, acknowledge it, then literally put it away. The past really is past, and the future is uncertain and out of our control…. and every minute, every second we spend thinking about either robs us of the joy of our right now.”
 

Penn Medicine does this program called Penn Program for Mindfulness – but it is very expensive I think.  And I know how everyone says there is help for paying for all this stuff , but still. I did find an interesting blog about this  topic….And another interesting blog called Komen Watch . What is up with all the Komen criticism?  Have they gone too commercial? Gone too pink rubber bracelets? (I can’t stand those rubber bracelets incidentally)

I did find a fun website today called Pink Kitchen  and I also got to talk to Catie herself from Catie’s Organics/Energy Essentials! 

My sister got me hooked on her vitamins and supplements – I have a whey shake in the morning  (no soy, no soy milk – usually almond or rice milk or coconut milk) with gluten-free wheat grass, amnio collagen powder, and whatever fruit I have around – berries, bananas, peaches, melon, whatever.  Anyway to that shake I add Catie’s Whole Food Vitamin C Plus  and Catie’s Organic Greens – I sound like an infomercial, but these products and I get along.

Anyway, I did the flake moment when I looked at my calendar and thought “huh, my order should have been here by now”  – so I called the customer service number.  Ends up I never hit “submit”…so I am speaking with this nice lady who suggests I try the Gluten Free Version of The Organic Greens – because it has among other things asparagus in it.  Who knew that asparagus was on the plus list for cancer fighting foods?  I love asparagus too!

So this nice lady is asking me this and that and I said in the order I submitted I am interested in information on stuff they have nutrition-wise that is beneficial to breast cancer  or cancer patients, etc.  Then this lady started quizzing me about my treatment and all of a sudden I realized I was talking to Catie herself.  Sorry but I found that very cool that this business owner would take the time to speak with a small customer like myself.  

And then I found myself talking about recipes with Catie and she liked this new thing I had made up when my friend Sandra gave me a new thing to try in my organic veggie box a week ago: garlic  scapes – they are like young garlic tops for lack of a better description.  Anyway, I   sautéed them with fresh greens  and white beans (navy or kidney whatever was dried in the jar that I soaked) – I think it was two kinds of kale or it might have been kale and collards and some fresh basil, oregano and a little salt and pepper.

Anyway, what a super cool lady and Linda?  She likes Maca too. She has a lot of recipes on the Cure’s in The Kitchen  site.

Today all in all wasn’t bad.  I am discovering I do have inner strength and my soul is stronger than I give myself credit for….that’s all folks…my boob hurts and so does my tail bone where I slipped and bruised it but good….I have things to do so ciao for now.

 
Posted in Uncategorized | Tagged , , , , , | 1 Comment

emotions like a tossed salad.

Posted on June 15, 2011 by carla

Wow.  I am doing breast cancer emotions roulette today and I apologize in advance.  I don’t want to be a burden and apologize if I am but today I am a little overwhelmed.  The whole thing – swollen boob, miscellaneous pain, feeling tired physically and emotionally, not feeling attractive every day, work pressure, undefinable life pressure, and so on – I can’t decide today if I am balancing or juggling.

I feel a little like a tossed salad might feel if a tossed salad could feel….

One of my Barbs coincidentally before I spoke to her early this morning   (I have more than one like I have a ream of Karens), had given me what she calls a bible nugget on a 3″x5″ card and I am just going with it:

 

“The Lord is my light and my salvation; Whom shall I fear?  The lord is the strength of my life; Of whom shall I be afraid?” ~ Psalm 27:1

 

Deep breath…inhale…exhale…release…just breathe woman….I am not trying to be a big baby…sorry…I will work through this, just giving advance warning that I might be not-so-tough-girl today….Not feeling negative though…just a little like a tossed salad.

 

Posted in Uncategorized | Tagged , , , | 3 Comments

je suis fatiguée

Posted on June 14, 2011 by carla

Can I say I am tired of being tired?  I am tired of being tired. I am tired of the swollen boob syndrome and hurting. 

I will get better, but I am tired. 

And I am in a weird mood.  At times  this disease called breast cancer is a lot to take in.  Trying to live a normal life, but on some levels, what is the new normal?

And oh yes, what else?  More reams of paperwork to fill out…for the medical oncologist and the radiation oncologist. 

Balancing life, getting back to life, trying to manage stress and new costs of living.  It’s a lot.  It made me check in with my nurse navigator today.  She is this voice on the other end of the phone who is just calm and normal and soothing.  At least when I talk to her when I have doubts, it makes me feel more normal.   Some days you can still be positive but not feel normal.   After all, being one of the anointed ones with breast cancer can be damn annoying and I still wish this would not be happening to me thank you very much but it is and so I shall deal…whew! Holy run on sentence Bat Girl!

I want the oncotype back already. 

Hey God?  You listening?  Low end of the scale please in the oncotype world of things…

How do people do this?  Am I doing it with the same grace and courage I see in others fighting breast and other cancers ? 

Have any of you read Onco Girl?   You should.  It puts a lot into perspective….

Other new things? All natural deodorants.  Yes, yes….paraben free, aluminum free, and so on.  I am becoming smell obsessed this summer…

I have been trying the Trader Joe’s all natural but I think it’s only so-so.  That being said a couple of my friends have told me about the mineral salt crystal things.  You wet it and put it under your pits basically.  Or you rub it on when you come out of the shower and your skin is wet. So I will try one of those.

News flash: girls don’t like to smell.

Yes, I am still positive. I will fight to remain positive.  I will fight to kick this cancer’s ass with a little help from my friends. (Love you guys!)

Finally?  This journey is a process, people.    That’s for damn sure.

Now back to your regularly scheduled programming…

Nighty, night

 

Posted in Uncategorized | Tagged , , , | 2 Comments

a gift from the heart: an angel’s wing

Posted on June 12, 2011 by carla

There is this jewelry designer named Megan Steer who lives and designs in New York City.  I was introduced to Megan and her company Lura Jewelry through my friend Janet who created Clover Market.    I do some of the photography for Janet for Clover Market as many of you know, and when I saw Megan’s work, it was love at first pair of earrings. And getting to know Megan, the artist, has been ever so nice as she radiates such amazing energy and kindness. She really is a beautiful person inside and out, and the way she is? Most simply put, it is reflected in her creations in a very cool, sometimes inexplicable way.

Well, I have never missed a Clover Market until my surgery.  The last market was just a couple of days after my surgery so I just couldn’t do it.  Megan sent me a little note after I wasn’t at the last market of the spring season saying she had missed me.  I sent her a note back and told her I was sorry I missed her, and what was up.

I got a box in the mail on Saturday.  It was from Megan with a note that said in part:

“…I’ve told you before that you bring me luck, so I wanted to send you this necklace.  When I carved it I was thinking of an angel’s wing, and the writing on the back is Sanskrit and it means “I am divine love”…I’ve also been donating money from the sale of this necklace to the Breast Cancer Reasearch Foundation.  There is a lot of love, and a lot of healing in this piece and that is why I want you to have it!”

I love the necklace and I am blown away by Megan’s generosity of spirit.  It was exactly what I needed – I have not written since Friday morning and suffice it to say, the pressure from work has taken a toll on my post surgery self.  The stress on Friday caused incredible and surprising pain to my two surgical sites – where the nodes came out and where the lump was excised.   And some swelling too. I know that probably sounds nuts to some of you reading this.  Sorry.  Not trying to freak anyone out.

I did, however, have a great weekend which was very relaxing.  I am a lucky girl at the end of the day. And I feel the love you all send me around me. So one day at a time, yes?

I am a little out of steam and am going to say good night…

I awoke this morning with devout thanksgiving for my friends, the old and the new.
– Ralph Waldo Emerson

Posted in Uncategorized | Tagged , , , , | 2 Comments

friday morning…

Posted on June 10, 2011 by carla

Friday morning…another week done.  Another week with breast cancer, yet an essentially positive one.   This disease is a bitch, however as it makes you question everything… but I am o.k. and with a little help from the almighty, modern medicine, and friends & loved ones I will be fine and remain  fine.

But back to the question everything – breast cancer does do that.  Hand in hand with that, comes how snippets of conversations can affect you now as a breast cancer patient – your awareness is heightened in a sense.  So when you are speaking to someone going through treatment and/or living with the disease  be aware –because even if they get it and they  never deal with radiation or chemo or surgery ever again, I am learning you will always live with the disease – it is part of you forevermore which is why it is so important to handle it well I think.  Maybe that doesn’t make sense, maybe I have not articulated it properly, but there you have it.  Inner peace some moments, even when choosing to deal with this positively is something which can be hard-won.

So this morning my hospital system finally calls me back about the bills. “Well we can only break it out over six months” this faceless voice says to me.  Really, I am thinking?  Well you all better hope you don’t sock me with too many bills.  I find that really, truly aggravating.  I like to pay all my bills, including any credit card balance, off at the end of the month. And I do.   But where are the brownie points for that?  I ask because the first time you ask for help, a little consideration, or a payment plan they act like they are going to give birth to a Hydra if that happens. 

Seriously.   I don’t like asking for that consideration, but I did and they can deal with it.  After all, how many people do they have that just stiff them?

Oh I took a long look at the other incision today where they actually removed the tumor.  The surgeon removed those strips covering it yesterday.  It’s kind of cool.  She basically unzipped my skin above my nipple, following its curves.  So as I heal, the scar will be there, but it will be very neat and mostly unnoticeable. The other mark is not an incision, it was actually a blister that was caused by the strips and adhesive.  And what you see otherwise is the incision  and scar in its early stages (slightly puffy ) – not anything improper.

Life goes on people.  And life is a process….one foot in front of the other.  I am good, people. Smile…

With the new day comes new strength and new thoughts.
– Eleanor Roosevelt

 

Posted in Uncategorized | Tagged , , , , | 1 Comment

post-surgery update: more to do, more to learn…

Posted on June 9, 2011 by carla

Saw my lovely surgeon today – and she is lovely – I really like her and her office staff . 

I am not out of the woods yet so keep the prayers and positive thoughts coming.  That little bastard they yanked out of me goes in for oncotype. I have a stage 2 estrogen-receptor positive cancer- so this test is a crucial key in making sure I treat this the best way possible.

Ah yes… for some of you this is a new thing – it is a cool thing – oncotype is a test which to my limited knowledge basically tests  the tumor and from that they can have a better gauge as to the probability of recurrence and whether or not I will benefit from chemo, or if it will just be radiation and tamoxifen for now.

Depending on where I am on the scale – it comes back as a graph the surgeon said – is whether or not I need chemo.  If I am on the low end, no chemo; if I am on the high end, chemo and radiation.  If I am in the middle, I don’t know. But knock on wood and kiss the rosary beads, because as I have clean margins and no lymph node involvement I am hopefully considered at a lower risk for recurrence, but of course there is no crystal ball – hence why oncotyping is SO amazing a tool.

Oncotype is something the nurse lady from Aetna told me about yesterday when she was asking me if I was having chemo or not.  Yesterday I thought I wasn’t having chemo at all, and now well, I don’t know – will have to cross that bridge when I get to it.  I just sure hope I am not being paranoid and I didn’t flunk some quiz with the insurance company and they won’t try to deny my having it or paying for it – after all I am the new cancer patient not a doctor.

But we are going to think positve thoughts, are we not? 

My sweet man took me to see the surgeon today and I know he was tired and it is Africa hot outside.  He is aces and so are my gal pals.

One of my neighbors brought me over this amazing pasta salad tonight so I did not have to cook.  It is so good.  Not cooking once in a while is indeed a treat.

Today in my surgeon’s office I looked around a very crowded waiting room and except for a couple of women, the majority oozed this vibe that scared the crap out of me.  Maybe that is insensitive because who knows what everyone’s stage of the disease was, but truly a room full of negative oozing women really gives a bad vibe.  I hope I do not ever go to live in my head where some of them obviously were – how sad.

So…one more day of this under my belt!

And a final note and cause for celebration?  I can wear deoderant again!  Yipee!  I think I am going to stick to the quasi organic kind with no aluminum and no parabens for a while just to be safe – besides it will be what I have to use during radiation if they let me use anything at all.

Time for one of my favorite positive affirmations:

I choose love, joy and freedom, open my heart and allow wonderful things to flow into my life.

Posted in Uncategorized | Tagged , , , , | Leave a comment

dancing dollars and other tales

Posted on June 9, 2011 by carla

Hmmm my blog must be getting some reads because spammers have discovered me.  Hey spammers? Truly, you don’t want to mess with a woman with breast cancer.

Yesterday was o.k. except I am tired and I still hurt  and my left hand, mostly the fingers got a little swollen until I rested my arm.  My left underarm in addition to being smelly most of the time just seems to feel dry and odd – I think it’s because I am not using deoderant or anything.

Did I mention I have Aetna for health insurance?  I found out yesterday that they do not cover the creams that cost on average $85 and up that help your breast get through radiation.  Xclair, Biosane (sp?), Radiacare…all not covered.  I hear people talking about “My Girls” but that is also kind of pricey.  One that is reasonable that most women seem to like is Sween Cream.  It’s all pricey but I have to try something.

Money, money, money, it’s only money …isn’t there an old Abba song with those lyrics? YIKES.

Oh and it gets better…go ahead…ask me what radiation will cost me out of pocket every week for six weeks?  Ask… ok give up?  $250 per week.  And the breast MRI? The co-pay is $250.

Guess what? These people can put me on a payment plan.  I have to live. I am not made of money and this is starting to bother me.  Women have to worry about SOOO much when dealing with breast cancer.  Truly, it’s not fair and it needs to change.  We don’t ask for this disease after all.

I am seeing dancing dollar signs…can-can gals.

Oh part of my benefits means I get a nurse from the Breast Program from Aetna.  She’s really nice.  Wish I wasn’t so suspicious of insurance companies even if these are benefits I pay for – I think it’s left over from my Keystone years. 

I wonder if I can start using deodorant on my left pit soon.  I found an all natural no aluminum no paraben or whatever deodorant from Trader Joe’s.

Oh and I spoke to the nutritionist that came to me through my hospital’s breast cancer program – I need to know what I can take and can’t take during radiation and what I have to cut out permanently – soy is the no brainer.  But she said something about flax seed? And maybe evening primrose oil?   I did not take them too long so I am not particularly attached to them .  But she had never heard of Maca root.  Maca root kills hot flashes.

But ahhh yes, from Memorial Sloan Kettering:

What are phytoestrogens?
These are herbs that have estrogen-like activities. A few popular examples include soy, red clover, flaxseed, and dong quai.

 

Now Maca doesn’t have a bad write-up on Memorial Sloan Kettering’s site…hmmmm…but   evening primrose oil? No more of that.

No more flax for me either…But seriously?  The Herb Info section from Memorial Sloan Kettering is helpful

It’s hot and I have a headache…but I will think positively.  It’s as hot as hell out though….

You must do the things you think you cannot do.
– Eleanor Roosevelt

Posted in Uncategorized | Tagged , , , | 4 Comments