new hair, tired body

Posted on September 1, 2011 by carla

One of my friends took me on a beauty excursion early last evening and I came back with new hair.  After my negative salon experience  earlier this summer I had  given up on the hair thing.  I had not had my hair cut since March I think. It was so nice and I loved the stylist.  She has such a following I might not get an appointment for at least a couple of months, but wow she is amazing.  I think she fit me in as a favor to my friend and I am very grateful – I needed to feel girly for lack of a better term, even if I am so g.d. tired.

 While I was there I met another customer who has a friend who is about a three-year breast cancer survivor.  What a cool woman and her friend did the brave thing and opted for a double mastectomy and chose to not have reconstruction.  This lady’s friend has been on tamoxifen for a couple of years now and the only side effect I could discern was occasional moodiness.  So that was helpful.

What I realized however, is that I do not know if it is temporary or permanent, but radiation has changed the texture of my hair.  I love the cut incidentally, but the rest of me is just tired. So yes today you finally get to see who scribbles up here, and I apologize in advance as to how tired and solemn I look.

I am just beat.  The photo is not in color because I don’t feel like looking at me looking at me off my blog and looking at the darn rash.  I am also sore.

I made the executive decision to take a couple of days off.  I have been a trooper and worked throughout this whole process and have had no vacation.  So I am giving myself a mini-break.  Because I do not get vacation or sick days I will have to make the time up later in the month (rabbit,rabbit it’s September 1st by the way), but I need a break.  I can’t ignore the signals my body is sending me.  I am exhausted. And when you are THAT tired that it is even inhibiting your ability to sleep right and you feel like crying for no reason – it’s time to take time for yourself even if you aren’t going through breast cancer treatment. I can’t stay positive if I am this tired.  I refuse to lose that.

Ok kids time to go pulverize spinach into my morning shake. Then off to rads. Then I am taking a nap.

 

 

 

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hello single digits! (27 down, 8 to go)

Posted on August 31, 2011 by carla

Today was a banner day even if I am so beat out and red and rashy and the whole left side of it all hurts.  As of tomorrow I have 8 more to go.

One of the techs where I am being treated rocks out loud as I am just that raw and sore and miserable that I asked if they had anything I could put on as soon as I was done radiation – and he got me a sample of Biafine that did the trick.  Wish I had known Biafine could be sampled – at $100 a tube it is really pricey and insurance refuses to cover it and when you contact the manufacturer to ask them why they don’t do something to make it affordable (and oh yeah it is made by Ortho Dermatologics a division of Ortho-McNeil-Janssen Pharmaceuticals – so if you are from Philadelphia and know any McNeils think of this), they send you back some hooey that is pharmaceutical company double talk which is almost as annoying as insurance company double talk.

My escort today was continuing the theme of Gladwyne was one of my Karens…and we giggled our way through.

Pardon the lobster photo, but even the bunny earrings can’t make this crap feel good today.

Deep breath…almost there…I need a couple of days off from everything I think…and not just the weekend.

Now that I am almost finished I will tell you who my radiation oncologist is – she’s very cool and kind of famous for her charitable contributions to breast cancer.  I have had the privilege of being treated by Dr. Marisa Weiss founder of www.BreastCancer.org 

As this  part of treatment draws to a close, I have to say once again I am humbled by the love of my friends, family, and sweet man – you helped me find my strength.

A thousand simple thank yous.  I am blessed to have you in my life.

Another interesting thing to note – via twitter and a secret habit of watching Real Housewives of New York City, I noticed that one of the wifey types was developing a line of undergarments – Jill Zarin (Her website is www.jillzarin.com – WordPress is  still wonky and I have been having issues for a couple of days entering hyperlinks – so much for preformatted HTML code, right?).

One of the things most lacking in this dealing with breast cancer process are  TRULY comfortable and attractive as well as soft and supporting shaped camisoles (NO underwires)- which I now understand why they are important as red and raw as I am .  If you go to a custom lingerie maker like Gie Gie in Paoli,PA you can get things, but the reality is they are incredibly expensive and out of touch with reality as far as what most women can afford as they pay for treatment. 

I have hated feeling like a sagging old mountain woman ( sort of like Chloris Leachman’s character in “A Girl Named Sooner” circa 1975).  And Gie Gie in Paoli is definitely out of my price range given the research friends did for me.  I found one slightly shaped cami at WalMart but it has so much spandex in it that right now it hurts to get into it.

So I sent a tweet to Jill Zarin and followed up with an e-mail.  I was impressed she replied to me personally (and was so nice!) — people like to mock reality stars but if they can help get breast cancer patients more comfortable and attractive and affordable undergarments, that is such a positive thing to do with celebrity.  Breast cancer hits at the core of each woman’s femininity and I don’t need something with hooker lace  and off the pole satin accents, I just want something soft and comfortable that looks and fits nicely….that is AFFORDABLE to all women.

Between that and the tweet from one of my favorite actresses Nia Vardalos, I am happy to see when people use their celebrity for good.

Dog tired and signing off.  One of my gals is rescuing me later for a glamour session…I could use it…feel old today.

But tomorrow I am one day closer!!!!

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YO!!! tomorrow the single digits of radiation starts!!

Posted on August 30, 2011 by carla

Today was 26 down and 9 to go! NINE LEFT!!!!!!!  YAY!!!!!!!!!!!!!!!

(What a way to spend the summer – yikes!)

I also learned today when the cute Mrs. G came out of her last treatment that I get to ring a REALLY noisy bell!  The three-year old in me approves as I figure if God wanted me to be quiet, I would have been born a mute.  

Today my escort was my friend Jenny.  Jenny is amazing.  She is a wife, mother, friend, full-time lawyer in private practice and holds local elected office – I am as proud as the dickens of her because she is running for county commissioner this fall.  Jenny and her husband have been awesome friends to me over the years and her kids are among my favorites.  When you know women like her, you are inspired to be better.

(Yes Jenny, you know it’s true :<})

So onward and upward…one annoying thing is my breast is truly an ugly shade of almost neon red with little bumps that are almost like blisters – my skin hurts and is hot to the touch and lordy am I using the creams.

Nine more.  I can’t believe it.  Wow. Just think, soon you will get to hear me wax poetically about five years of tamoxifen…

What lies behind us and what lies before us are tiny matters compared to what lies within us.

~Ralph Waldo Emerson

 

 

 

 

 

 

 

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25 down, 10 to go…

Posted on August 29, 2011 by carla

Yes indeedy…rads rash and all the BIG countdown starts tomorrow!  My friend John says we should do a countdown like a missile launch.  Now it would be fun to have a pink missile as the image but it might ummm look like something else and well….LOL, not suitable for prime time viewing….

I am sure the waiting room at the hospital will be much quieter when I’m out of there, but I will miss some of the ladies I have met.

The future depends on what we do in the present.

– Mahatma Gandhi

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my weekend with irene, week six starts monday with 11 to go

Posted on August 28, 2011 by carla

Sorry, was so damn tired at the end of last week I didn’t do my daily posting.  After tomorrow, I have 10 radiation treatments left to go I think. I am still suffering through what can only be described as a radiation rash.  It is bumpy and itchy and icky to look at. It also feels swollen around the left breast.  It makes me feel quite unattractive.  But it is always better than the alternative.

The week ended last week with some woman yelling at me and Sherry about CNN/Money coverage of Ardmore which included First Friday Main Line…from 2009.   Yep, file under way to go outraged Sleeping Beauty. Of course it was rather amusing that it ends up the woman was a couple of years ahead of me in high school – you see after she yelled at my friend Sherry I called to try to figure out what the issue was with copy written by a major media outlet and not us.  She could not articulate her argument and ended with “you always were a pain in the ass in high school”.

Nanny nanny boo boo. 

How damn funny since I then knew exactly who she was.  Very ironic too considering what people  whispered behind her back in high school, along with the fact we did not hang out as it were.   More props to my theory of people who get stuck in their heads and in the past.  Maybe as a relatively naive girl in high school this might have cowed me, but not now.  I dont’t give a rat’s fanny if someone thinks I am a pain in the ass – it’s life, it happens.

The ultimate breast cancer irony of it all is she works for some sort of IT consulting business locally that actually has or had something to do with the website BreastCancer.org – found BreastCancer.org on their site. Mind you since I looked them up on Friday for some reason the company’s website is no longer loading on the web.  Maybe coincidence or something Internet funky to do with Hurricane Irene since a lot of web sites seem funky or not loading right….. 

As I was talking to this woman  on Friday (or trying to)  I kept thinking I work full-time, am going through treatment for breast cancer, and volunteer, and I deserve to put up with this crap?  The answer is of course I do not.   But part of the epiphany of having gone through a breast cancer diagnosis is that awareness.  Life is too damn short for bullshit.  And women who act like aging Mean Girls need to get a clue.

So Hurricane Irene totally messed with my weekend with my sweet man and last night I got no sleep.  Truthfully I have been up since about 3 a.m. – the wind and rain howling and swirling kept me and my critters awake.  The power went on and off all night and continues to flicker today.  We had a bunch of trees down in our neighborhood and other storm water related flotsam and jetsam.

Mind you I hear my ex’s neighborhood fared worse than mine.  I hate to be a girl about this, but whatever happened to his neighbors I am sorry for, whatever happened to him, not so much.  I wonder if my GIRL’s bike that he wouldn’t let me take when I moved stuff out floated away out of his garage?  I never quite understood that or many other things, but am thankful that God worked in mysterious ways.  As my friend Barb said it was like I just got lifted out of that relationship…and then arrived my sweet man on the scene.  To be with someone who genuinely loves you and accepts you for who you are right now in the present, who you were in the past, and who you may be in the future is priceless.

What a summer I have had – this makes three so I am due a break – breast cancer, earthquake, hurricane.

To the ladies of the Driving Miss Daisy Schedule, we’re starting week six, right?  Can you stand it?

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22 down, 13 to go….

Posted on August 24, 2011 by carla

So today was number 22, with 13 left to go.  Also had a CAT scan to plot out where I have been and where they go with the last of my radiation doses.  This morning I had it all straight in my head what and where and why, but as I get ready to go to sleep…it’s out of my head.

The radiation rash is getting a little better, but it’s itchy.

The waiting room today had a different vibe.  People were so upbeat today it was almost like the chatty atmosphere of a really good cocktail party.  It was pleasant because some days the vibes are really difficult.  Face it, what is happening to us patients there is difficult.  Not just the physical, but the emotional.

Another week halfway done. 

After dinner which I kind of forgot to eat because I kind of forgot to make it I went with my friend Barb to check out her prayer group.  Not my usual type of thing, but life is trying new things.  Met some very nice women, truthfully.  Including a very intuitive and cool female minister.   It was a different experience for me,  but people get their faith in different ways and I try to respect that.  Hopefully God had prepared them for me :<} (I can be a pain in the ass)

‘Night all….tomorrow brings another day of breast cancer Mardi Gras….

 

 

 

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21 down, 14 to go…and yes there was an earthquake

Posted on August 23, 2011 by carla

21 down and 14 to go and an earthquake felt here today originating from Virginia apparently – 5.9 on the scale.  Mind you I was already through radiation and can’t help but wonder how much the hospital will have to re-set?

Seriously, I was home, working and everything started to shake.  I thought I was passing out or my neighbor was moving furniture.  My beasts started to bark and went under tables.  And then it stopped – I thought I was nuts.

It’s not every day a gal gets radiation and an earthquake. Or an earthquake and breast cancer in the same year.

Freaky.  All we had were tremors here in the Philadelphia area but the media is blitzing it like a blizzard.  I seem to remember this happening when I was a kid too….1973 – my mother said daddy rolled over and said “today an earth tremor, tomorrow another burglary” and then went back to sleep.

Speaking of my mother, a little scary for my mother because my mother was on an elevator when it hit today.

 And here the only time I thought the earth moves under my feet is when  a certain someone in particular gives me a smooch or two….

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rite aid, to me it’s personal and you are on my sh*t list.

Posted on August 22, 2011 by carla

Rite Aid is on my list and it’s personal – and I am pissed.

Yes, Rite Aid has made it to my “list”, a place no one wants to be twice.  Trust me.

I needed one of my creams refilled.  The one actually covered by my prescription plan, the Betamethasone Dipropionate one. You see, I have a bit of a radiation rash sprouting, and it itches (and has little red bumps). And this cream that I apply 3 times a day along with the Biafine (which isn’t covered by prescription plans thank you very much Ortho-McNeil-Janssen Pharmaceuticals).

So I called it in for refill. Followed the directions, was told it would be ready as of 8:30 a.m. this morning.  I decide to go after work.  I walked to the drug store to try to keep the exercise levels up – you know like they tell breast cancer treatment patients to do even though we are exhausted?

I get there and the pharmacist looks at me blankly and says “what is your name again?”

So I repeat my name.

“Uhh you are sure you called this in?”

Yes

“Uhh it’s not here”

“OK WTF do you mean it’s not here” my brain is screaming.  But I calmly ask why isn’t it here.  They tell me they don’t have any.  I asked why NO ONE CALLED ME AND SAVED ME A TRIP?

“Uhhh…I  don’t know…uhhhh…When do you need it by?”

Seriously? I am all but out and am going through daily radiation treatments.

Well maybe they will have it by tomorrow.

Maybe????

Mind you this is Rite Aid, the place that made me stand for 20+ minutes the day I had surgery before anyone would pay attention to me and fill post surgical prescriptions

(What they thought I forgot?)

So seriously right now I am STILL pissed about this. Telling me I could go from pillar to freaking post to find another Rite Aid that had this?  Seriously? Get real. Find the damn cream.  That’s what you all get paid to do as pharmacists. They have a jillion stores around here and want to shove in more with ginormous floor plans and ugly drive thrus no one wants.   Yet they can’t do a basic thing it seems: be responsible about filling prescriptions on time when they say they will.

Did I mention that they never called me to say they were out of the cream and would have to get it in???

Rite Aid you suck and you are on my sh*t list.  That list is never a good place to be. Once. Let alone twice.

To end the day with humor I will mention that I bought some donut peaches in honor of my left breast.

And for extra fun, this blog post has been sent to the executive offices of Rite Aid – not that they care, but I do and I will be a one woman negative PR campaign if I have to be.  

Dealing with breast cancer is hard enough. Rite Aid should not be part of the equation.

 
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20 down, 15 to go and what’s up with my mood?

Posted on August 22, 2011 by carla

Today was number 20.  Time flies when you’re having fun and spending gobs of money to stay alive, right?

O.k. sorry but Ms. Cranky Pants is in the house a wee bit today.  I am overwhelmingly tired, and yes I have slept.  And call me crazy, but being so fatigued almost makes me feel depressed at times. (Which is as irritating as shit, let me tell you) 

I think maybe some days I am overwhelmed in spite of myself.

Friday night was date night with my guy and in spite of the rain and thunder it was an awesome night.   I actually dressed up a little and felt more like a girl and less like a breast cancer fashion victim.

Saturday my sweet man took us down to visit my friend Barb and her family on Saturday.   Barb knows that MeMom’s place in Ocean City is special to me.  MeMom’s house is a traditional brick beach house with amazing porches and is over 100 years old.  It holds to the testament of time and perseverance, existing in the midst of some damn unattractive modern Jersey shore housing (I refuse to call most of it architecture). His son had an awesome play date day with Barb’s son and my friend Stephanie’s son (who has the most impeccable manners, incidentally)….. Oh wait, I forgot, they are tweens or close enough, so it’s not a play date, it’s hanging out – even if the parents still arrange the time, LOL.

I spent a little time on the beach under an umbrella, took some awesome photos and went for a walk, but watched my sun exposure and retired to one of the porches for an awesome by-the-sea nap.  After that we took a stroll on the boards, had pizza at Mack & Manco’s and called it a day.

Sunday was a fitful stormy day and crazy humid, so I pretty much stayed inside until it was dinner time.  After a long weekend, we decided to go out to dinner. So we went to Wayne. 

We thought we were going to Theresa’s, what I used to think of as a cute BYOB. Two twin blondey blonde tartlet hostesses were the keepers of the tables.  In spite of NO lines outside and a NO reservation policy, they were playing the waiting game for tables.  And oh yes, there were several empty tables.  “Forty minutes” they chirped in unison after looking us up and down  – incidentally, I have been to some mighty fine restaurants in Manhattan and the Hamptons whose hosts and hostesses never did that up and down look see.  I felt like telling those lil miz things they weren’t all that and a bag of chips, but I did not let the inner voice play outside.

It was already 7 pm on a Sunday, and this little rads girl was tired, so we went down the street to Christopher’s where we were greeted cheerfully, and seated immediately.  It was more crowded in Christopher’s, yet we had a delicious meal and wonderful service.  On our way back to the car we walked by Theresa’s.  The hostesses were still holding guard, and they still had empty tables.  When a restaurant starts to believe their own hype, eventually they tumble-down.   I don’t know about you, but I prefer my dining experiences attitude free.

Radiation today was once again a crowded affair.  And they were running late again.  Today I figured out why.  There is an older woman who obviously can’t bring herself, and she has a couple of people who bring her.  They bring her in late.   When you are getting radiation, the common courtesy is you arrive a few minutes early because you have to change.  The time of your actual appointment is when you go into the room, not when arrive to get changed.

I feel sorry for this older woman because this is obviously beyond her control.  And she is so frail and a little out of it that everything takes longer with her to begin with.   I have noticed  it’s usually one person in particular who makes her late.  Yes, I began my 5th week today so I recognize the cast of characters.  However, this one woman who brings this older lady should be more considerate of the rest of us.   But the reality is, those people generally exist in a bubble, so we don’t rank.

I am so tired, people.  Truthfully I am thinking this is what chronic fatigue must feel like. And another damn stitch is working its way out around my nipple, so the zapped area is extra sensitive.  Tomorrow I get a doctor check too. If insurance doesn’t cover what it is supposed to by the end of this I might throw a ginormous temper tantrum.

A domani!

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19 down, 16 to go…need a nap, have earned a nap

Posted on August 19, 2011 by carla

Today my escort was a friend I don’t get to see very often, Pat.  So I had a lot of fun and completed yet another week of radiation treatment.  

Still lobster-like and finding myself in need of a nap.  My work work is complete for the week, so I can indulge myself. Not that naps should be considered an indulgence I suppose – in my case, right now it is a necessity to stay healthy. I am like a battery that needs to be recharged….

Thank you all for buoying me through another week.  This morning I had the added bonus of speaking to my niece and nephew who are en route to their cousins and a Katy Perry concert.  How fun would that be?

16 more to go….in essence 3 weeks….wow how time flies when you are fighting breast cancer.  But damn, I am a survivor now, am I not?

My nap theme song  today is one of my favorite Sophie B. Hawkins songs “As I lay me down”.  It just popped into my brain as I was contemplating catching a few z’s.

 

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