human nature and in memoriam

Posted on January 24, 2012 by carla

Human nature is a funny thing.  And soon I will be a year out since my official breast cancer diagnosis, and I keep rediscovering we as human beings are curious creatures indeed. Especially when it comes to this disease in women.

There are, for example, some people whom I told I had breast cancer whom I have literally never, ever heard from again.  One person in particular comes to mind.  We used to work together.  For years we were tight as ticks.  We did things together, spoke on the phone often even after we no longer worked together.  I always was available as a friendly ear when she was going through her divorce and even when she was having problems at work.  But when I told her I had breast cancer, it was like *poof* and she was gone. 

Oh well.  That kind of hurt my feelings, but hey, some relationships aren’t meant to be forever, and a lot of people can’t handle the big C word.  Also a lot of people are only comfortable when you can be a comfort to them – they are down right terrified if they might have to reciprocate.

Then there are the people who were depressed for me.  Good intentioned, well-meaning people I had to put at arm’s length while I went through surgery and treatment.  I couldn’t handle the downer vibe, literally.  I know, I know I sound like a selfish bitch, but there were some days that were a lot harder than I ever let on and I had my limits of what I could handle.

When you get a breast cancer diagnosis, people are all over the map.  And some just disappear like they could catch it from you or something.

And then there are the people who say helpful things to those who know someone touched with breast cancer like “that’s too bad.”  That happened to one of my dear friends recently.  She recounted the story of telling a man we both know (her father) how I had breast cancer.  So truthfully, I am not quite a stranger. 

But all my friend got from this man (her father) was a “that’s too bad” or “that’s a shame” and some recitation of something which happened to him one time when he was ill – not breast cancer mind you.  Now I am somewhat used to the oddness of response in people, but I felt badly for my friend because of the reaction she got. I would not expect this man or his wife to contact me as there is no connection any longer except maybe a wave across the aisle in the grocery store.   I mean if I was somehow useful to this man’s wife, I would have gotten some Jesus loves you note most probably, but I digress.  

And life goes on.  And people are just odd about life and illness.  There are a lot of people I have just never heard from.  People I used to connect with regularly.  Lives get busy, so I just kind of let it all go.    I have bigger fish to fry and worry about.  People are either in your life or they aren’t.

Now a few months post everything, some days on Tamoxifen are just a struggle.  I seem to feel things emotionally more acutely for lack of a better description. Some days are extremely difficult as a result.

Today, which started rather well is one of those days.   A woman I knew from the time we were little girls together died a couple of weeks ago from breast cancer.  I had only recently reconnected with her on Facebook, but hadn’t done any catch-up.  And face it, sometimes breast cancer is not the conversation starter we want as survivors.

Anyway, I do not know why I thought of her, but I did today.  So I went to her Facebook page, and seriously, for a minute I thought the air was being sucked out of the room. 

Joanna had breast cancer. Joanna and I were the same age.   Joanna died a couple of weeks ago.

Requiescat in pace Joanna Putney Durdle

This in an odd way has hit me very hard.   It’s the first breast cancer death to touch me personally since my own diagnosis, and it is someone out of my childhood.

Lordy.  I remember playing with her as a little girl.  I am talking elementary school little.

I knew Joanna as a little girl and in high school .   I am sometimes oblivious to how many women who have touched my life who have had breast cancer. I had no idea  she was of the group, and had no idea she passed away.  I sound so darn stupid right now, and I sincerely apologize, but I am trying really hard not to cry (and failing miserably)- I have this memory of her as a little girl stuck in my head from Society Hill.

I am sorry I did not really have the opportunity to know her again as an adult, but I bet she was as lovely as she was as a child.  She was just nice.  In fact, judging from what I read on her page, I know that she must have been the same nice person as an adult.  She  was my age.  We played on the same playgrounds as kids and went to high school together too.

Wow life is short.  How many times is that going to hit me in the face with regard to breast cancer? 

I am going to past Joanna’s obituary below.  To her friends, husband, children, and family I send simple, heartfelt condolences.  

Breast cancer, you sure are a bitch on who you take – not that you discriminate.

Joanna Putney Durdle 

 
 Joanna Putney Durdle, 47, of Moreland Hills, died Monday, Jan. 9, 2012, at her home after a courageous two-year battle with breast cancer.
Joanna was born Sept. 3, 1964, in Boston, Mass., to the late Paul W. Putney and Joan (High) Putney of Rydal, Pa. She married Brian P. Durdle July, 8, 2007, who survives her.
Joanna attended Valley Lutheran Church in Chagrin Falls. She graduated from The Shipley School in Bryn Mewr, Pa., the College of Wooster receiving her B.A. in English; and received her M.A.T. in English from Kent State University.
Joanna was a member of The Country Club in Pepper Pike. She was a loving daughter, sister, wife, mother, aunt and devoted friend to so many.
She was employed as Director of Pre-Primary Admissions at Laurel School in Shaker Heights.
She is survived by her son and three daughters, Chase P. Pavlik, Taylor K. Pavlik, Ellie M. Durdle and Grace L. Durdle all at home; brother, Andrew Emmerson (Marguerite) Putney of Manchester, Vt.; father and mother-in-law, Patrick and Linda (Jordan) Durdle of Ontario; and sisters-in-law, Chris (Rick) Wright of Galion and Miki (Matt) Graban of Shaker Heights. She also leaves behind her pets, Lilie, Sunny, Benny and Toffee.
A memorial service will be held 11 a.m. Saturday, Jan. 14, 2012, at the Laurel School, 1 Lyman Circle, Shaker Heights. The Rev. Daniel Esala will officiate the service.
The family will receive friends at a reception that will immediately follow the service. A private family burial will be held at the Iberia Cemetery in Iberia.
In lieu of flowers, donations may be made in Joanna’s name to Laurel School’s Scholarship Fund, Development Office, 1 Lyman Circle, Shaker Heights, OH 44122.
The Mark A. Schneider Funeral Home in Galion is honored to have assisted the family of Joanna Putney Durdle.
Online condolences may be made to the family at masfh.com.
Published in http://www.News-Herald.com on January 11, 2012
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good idea….but…..

Posted on January 23, 2012 by carla

Ok, so like most women who have had breast cancer, I do have issues some days with the “girls” looking uneven. Well, hell, let’s get real, I am missing a chunk of my left breast due to the lumpectomy.

And ladies and gents what is a lumpectomy technically?  A partial mastectomy.

So I keep looking for products that will help, bras that might fit more comfortably, and so on.

But while I see more and more products, I am not seeing prices on these products that are more down to earth and shall we say, “comfortable”.

In addition, some days I have this random pain where more of my breast used to be.  It’s not unmanageable, but it is there.

Today an article in West Chester PA Patch caught my eye:

West Chester Doctor Invents Shirt to Relieve Post-Mastectomy Pain

Dr. Deb Kimless-Garber has invented a shirt to help women after a mastectomy.

ByJake Speicher

In March 2006, doctors gave their colleague Dr. Deb Kimless-Garber a clean bill of health.  After a double mastectomy and the requisite rounds of treatment, Kimless-Garber was officially cured.

But she still had to deal with two problems.

“Pain and aesthetic,” Kimless-Garber said.  “A lot of women experience something similar to phantom limb pain after a mastectomy.  There’s all of these nerves in the breast, so why wouldn’t they experience pain.”…

“A reconstructed breast looks very different after a mastectomy,” said Kimless-Garber.  “Any type of breast reconstruction is a very different procedure than a breast augmentation.”

She added, “What you get is what looks like flat plateaus or mounds instead of a perky, shapely silhouette.”

That’s when Kimless-Garber went to work.

“What I was suffering from is called post-mastectomy pain syndrome.  Almost 50 percent of women who have surgery on their breast experience it, and it’s kind of a deep, dark, dirty secret,” Kimless-Garber said….

Kimless-Garber spent the next five years basically reverse engineering designs to come up with a shirt that would alleviate post-mastectomy pain while providing breast cancer survivors with a more shapely look in the bust.

That’s when Red Thread tops and breast shapers were born.

“My clothes didn’t fit right, and the pain wouldn’t go away.” Kimless-Garber said.  “So, I started to study fibers and began creating patterns.  It’s really a feat of engineering,” Kimless-Garber said.

The shirts look like a fashion top, except that sewn in underneath the top is what looks like a sports bra.

“Inside is a fully functional bra,” Kimless-Garber said.  “But it has a stretch component that also compresses. “….

A similar problem can occur after a woman has a lumpectomy, where part of the original breast remains intact but doctors have removed the cancerous area leaving a big defect.

“My breast shapers come in different sizes,” Kimless-Garber said.  “Women can place them in the shirt in any way they want in order to get symmetry.”

“Every woman has a different need,” she added.

Oh wow, this sounds great, right?  So I went to her website: Red Thread By Dr. Deb

I will probably never get past her website.

Why?

Pricing.

I don’t know about you, but my wallet is not a bottemless pit.  And that is the largest problem with these products.  You inevitably have to try a couple of different things before you find what it right for you.  So price point is everything.

And incidentally, I still have a “natural” silhouette.  Some days I am a little self conscious, yes.  But then I remember there are worse things in life than being a little lop-sided.

This Dr. Deb has a great idea.  It’s just not everywoman purse friendly.

Again, the website is: www.redthreadbydrdeb.com

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breast cancer mardi gras….there’s a cartoon!!!

Posted on January 17, 2012 by carla

As I sit here and FLASH, it’s the little things that amuse me.  So a fellow breast cancer blogger who has a post up recently about her lovely experiences in chemically induced menopause, has a cartoon in the post that almost made me pee myself it is so perfect.

Since jump, I have been speaking about what I like to call “Breast Cancer Mardi Gras” and what it is for those not familiar is since my diagnosis I feel like all I do is flash the rack. But unlike the case with actual Mardi Gras I don’t get beads, I get co-pays.  So when I saw this cartoon on tastethefireforyourself  (awesome blog, by the way – Meg is a terrific writer), I just loved it…so I am sharing….

I am exhausted by this point in the day due to the fun, fun, fun my body is adjusting to with Tamoxifen…..so a giggle is good….

In other weirdness of my body, myself this weekend my incision where the lymph nodes came out was kind of throbbing and my skin felt nasty there like it did during radiation.

I have been discussing with my docs at the suggestion of some survivors to add Effexor to my regimen at least for a while – it is an anti-depressant that has been proven to help decrease hot flashes.

From BreastCancer.org:

Medicines to avoid while taking tamoxifen

In the list below, the medications under the headings “Strong Inhibitors” and “Moderate Inhibitors” can inhibit CYP2D6 and interfere with the effectiveness of tamoxifen. The medications under the heading “Not Inhibitors” do not block the CYP2D6 enzyme and will not interfere with tamoxifen treatment.

This list is incomplete and subject to change over time. Use it as a starting place and ask your doctor if any medications you are taking or that are recommended to you are compatible with tamoxifen.

Strong Inhibitors
Generic Names Brand Names
Bupropion Wellbutrin
Fluoxetine Prozac
Paroxetine Paxil
Quinidine Cardioquin
Moderate Inhibitors
Generic Names Brand Names
Duloxetine Cymbalta
Sertraline Zoloft
Diphenhydramine Benadryl
Thioridazine Mellaril
Amiodarone Cordarone
Trazodone Desyrel
Cimetidine Tagamet
SSRIs and SNRIs That Are Not Inhibitors
Generic Names Brand Names
Venlavaxine Effexor
Citalopram Celexa
Escitalopram Lexapro
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trials and tribulations

Posted on January 17, 2012 by carla

Tamoxifen is so screwing with my sleep I am down right miserable. And the hot flashes and night sweats right now honestly suck. I know it will pass, but I am exhausted and crabby right now.

So maybe it’s the sleep interruption at night that is also affecting my moods, or maybe that is the tamoxifen too.   All I know is right now, some days, I feel like a hot mess.

I know I sound like a whiner , and I am sorry.  Yes I get the alternative is far more unpleasant than hot flashes and night sweats.

I go for a gyno check again soon and I have lack of sleep on the discussion list along with discussing a BRCA test.

I have had breast cancer, it and prostate cancer are in my family, so I think it might be a good idea.

I know someone who had one recently and she said she was glad she did.

You can read about BRCA testing HERE on breastcancer.org

Have any of you who are survivors had the BRCA test?  Let me know and tell me your thoughts, please.

 

 

 

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change

Posted on January 11, 2012 by carla

Life is about change and how you adapt.  Humans are creatures of habit by nature, or I know I am.  I will tell you what, one thing you learn about life after having breast cancer is to go outside your comfort zone. You have to. It’s how we survive.

First we’ll start with how I am feeling.  Two words: kid sick.  The good news is I don’t have strep.  The bad news is I definitely have a bug.  But I am doing the fluid and healthy food thing and as I begin this post I have a small chicken stuffed with lemon, rosemary, and ginger is roasting away. (I will break for dinner and return to this later.)

So now it’s later….I find that the Tamoxifen is still screwing with my sleep, which is one reason why I think that normally healthy moi keeps picking up naggly little kid viruses.   Truthfully, prior to the big C I had the constitution of an ox.

Tamoxifen is also causing skin break outs.  And then there are hot flashes and some night sweats.

However, I keep reminding myself this IS better than the alternative.  Still no period since October.  I do see my gynecologist at the end of the month for a check  – uterine lining, pelvic look see and all that good stuff involving cold gel and stirrups.

So I have been doing a “Clean House” on myself as my sweet man and I move to the combining households stage.  No, I am not a hoarder. Far from it.  Truthfully, I am a bit of a neat freak…but still, I hang onto things.

Yesterday in the back of the closet the 1980’s called and they wanted their headbands back.  I never had big hair, but I sure had big hair bands.

I also cleaned out the black tie archives and donated my favorite old dresses and gowns from years gone by to a church thrift shop. Sigh….that was hard.  I had not kept all of my dresses (I went to a lot of formal affairs back in the day), but I had kept my favorites.   But a lot don’t fit me and others that do I am no longer comfortable in – my style has evolved, I am older, and in some cases I am self conscious in some clothes post-surgery.

I have figured out that cleaning out the old is best done in small steps.  We surround ourselves with the familiar to keep us emotionally comfortable.  So when change comes, even when it’s a good knd of change, it still needs to be eased into, I think.   So ridding myself of clothes I loved but no longer wear is not the most difficult task, but it is like bidding adieu to old friends because each dress I had saved represented a really enjoyable evening in my life throughout the years.  I allowed myself to save one of the dresses from the archives.  Next I move onto the rest of my clothes.  I pared down my shoes to a respectable Imelda number a while ago.

Change.  It’s not just a word much over-used in political campaigns.

2011 was  change in the context of trials and tribulations of breast cancer from diagnosis through surgery and treatment.

Onward and upward. 

2012 is change, as in the time for sun.  Even if it’s raining this evening.

God never gives us more than we can handle, and I would like to believe he rewards you for handling difficult things well.   As humans, sometimes consciously, sometimes subconsciously change can make us a little tenuous.   I have my life, I have my friends and family, and I am loved.  It doesn’t get much better than that, does it?  So I will work with my change.

It’s all about putting the period on the end of your own sentances, people.

“I am not afraid of tomorrow, for I have seen yesterday and I love today.”

~William Allen White

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breast cancer research society: nothing like a rude breast cancer charity phone solicitor

Posted on January 11, 2012 by carla

I am on every do not call list known to man and God. 

I have an unlisted phone number.

Obnoxious charitable giving phone calls irk me the most.  Especially having to do with breast cancer.  The last time one annoyed me I wrote about it.

It was in October and the charity was “getting solicitation calls from breast cancer survivors foundation?”  It is one of the most popular post on this blog.

Well I have a new charity to add to my hit parade: United Breast Cancer Research Society.  Newly minted in 2010, maybe 2011 – can’t tell.

Anyway I get a dinner time call from some old bat with a whiskey and cigarettes voice representing the “United Breast Cancer Reasearch Society” .

So I said to the woman “How did you get my unlisted phone number? Who sold you my information?”

There was no reply  – and she called me as a breast cancer survivor. So someone sold my information, damn them.

So then she takes a breath and  tries to steamroll into this solicitation push, and I stop her and say:

“Let me guess – IF I make a pledge THEN you will send me information on the charity, right?”

“Yes , ”  she says indignantly and continued,   “and we will also send you a pledge envelope.”

Sound familiar?

So I asked her how much money her charity actually paid towards legitimate research projects versus overhead costs like professional fundraisers?

“How am I supposed to know- I work for a fundraising company?”

BINGO!  Been there, done that, have this T-Shirt. NO THANKS.

This broad then goes on to give me crap saying I better watch myself that this is a legitimate charity out of Washington D.C. (“Deee Ceeee”)

And she accentuated the “D.C.” like it made a difference. (And I had a mental visual of a pen or seat twirl and a possible head bob.)

So I told her I was so impressed and I bet they all had tea with Michelle Obama on a regular basis too.

Then she told me she didn’t have to take my crap.

You called me at dinner time, remember, I reminded her.

So she gives me a phone number to call – 1-800-688-5363  .  She tells me that she works for a professional fundraising office in NJ and this phone number is in Green Bay Wisconsin.  Then she hangs up.

I call the number.  Verify they are in Wisconsin and they say they are the answering service for Community Support in NJ.   The woman at the end of the toll-free number would not tell me the company she worked for taking these calls.

So I went to the web.  Soon I will upload what I found on United Breast Cancer Reasearch Society.  However, I will start with saying they have NO Guidestar seal.  Washington State also has a blip on them – they note paid fundraisers and a bullshit mission blip from the charity “To promote  research in areas of benefit to mankind with special reference to the healing  arts. (Read more )  ”

I found a few documents on West Virginia’s website too. Those are the public documents I am posting. The Better Business Bureau in Wisconsin kind of panned them – this “charity” hasn’t responded to their requests for information it seems.

This United Breast Cancer Research Society is registered in WV  AK AL AR AX CA CO CT DC FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NY OH OK OR PA RI SC TN UT VA WA WI.

This “charity” was given a seal of approval by something called PCRM.org – I gave them a ringy dingy to tell them what I thought about them for giving these people a seal of any kind of approval.  Among other things, who the hell are they anyway? And let’s get real, how can you as the Physicians Committee for Responsible Medicine endorse a charity that has done nothing?

So I can’t find any 990s on these people and they just smell of more of the same.   If you can’t research a non-profit and the person calling can’t tell you anything other than to ask for money, PASS.  There are PLENTY of legitimate breast cancer charities large and small.  But the ones with the “professional” fundraisers? PASS.

Breast cancer charities I find worthy?  Living Beyond Breast Cancer, BreastCancer.org, Save 2nd Base which benefits the Kelly Rooney Foundation, and Great Guys Group. THESE CHARITIES ARE THE REAL DEAL AND I HAVE NEVER GOTTEN A SOLICITATION CALL FROM ANY OF THEM.  You can research them too.  Even actor Alec Baldwin’s mom has a legitimate breast cancer charity! (Carol M. Baldwin Breast Cancer Research Fund, Inc  if memory serves.)

So save your pennies. If you are a breast cancer survivor, charity begins at home.  If you have something to spare, look into these charities before you pledge one red cent.  Pressure sales are not the hallmark of truly legitimate charities in my opinion.

And oh yeah…back to Community Support of NJ – found them – and called them up.  They were a little surprised to get an in-bound call, that’s for sure.

Community Support Inc  70 Clinton Rd # 4 Fairfield, NJ (973) 808-740

UPDATE 1.12.2012:  I have heard back from Physicians Committee for Responsible Medecine:

Thank you very much for letting PCRM know about your interaction with the United Breast Cancer Research Society, a Humane Seal approved charity. … The Humane Seal of Approval is awarded to health charities that sign a statement of assurance declaring that they do not perform or fund animal experiments.  Unfortunately, investigating charities’ privacy policies and fundraising operations is outside of the purview of the Humane Seal. We usually recommend that potential donors check websites such as www.CharityNavigator.org or www.GuideStar.org before making a contribution to any charity.

UBCRS signed the Humane Seal statement of assurance shortly after its inception, and we were hopeful that this new charity would hit the ground running and immediately start funding nonanimal research and providing much-needed advocacy for breast cancer patients, survivors, and those at risk for breast cancer. If it turns out that UBCRS is inactive on breast cancer issues, we will remove them from the Humane Seal list.

I will get in touch with UBCRS to ask what actions they are taking in the fight against breast cancer and to determine whether or not they should be removed from our list of Humane Seal charities. Thank you again for bringing this to our attention, and please let me know if you have any additional questions or concerns!

Best wishes,

Physicians Committee for Responsible Medicine

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don’t play with me

Posted on January 6, 2012 by carla

The gall!  I received a phone call a few minutes ago.  From the collection arm of my hospital system over a bill related to my breast cancer treatment.

A bill I already paid.    And oh yes, the amount they called about was $40.00. Not $400, not $4000, not $40,000. FORTY. Seriously?  And the woman was a persistent sing-song voiced twit.

“You might want to check with your bank.”

For $40 that I know I paid, she might want to kiss my ass.

I paid every bill as it came.  I am damn proud of that.  But to get a phone call over $40 is freaking insulting.

“Did I miss any payments?”  I asked my new phone buddy.

“Err no, but….”  she said

“No buts,” I said “That is your answer.”

And that is her damn answer.  Don’t play with me over $40 after all I have spent and sweated during Breast Cancer Mardi Gras (no beads every time I flashed the rack, only co-pays.)

It’s just insulting.  And you know darn well I won’t get a call when they credit it to my account.

Grrrr.

Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.–Dr. Suess

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flashing and moving on….

Posted on January 4, 2012 by carla

So, a brief post to say (again) that  the hot flashes SUCK.  Yes, suck.  They seem to happen to me mostly at night.  And when they occur in the middle of the night, they wake me up.

I hate feeling hot, and I hate not sleeping right.  But the alternative is less pleasant, so I assume this too shall pass.   I think I will increase my daily walking as I am told exercise helps. I know the walking helps with that cranky feeling that also seems to be around now that I am on Tamoxifen.  And walking will help with my worries over the fact some women gain weight on Tamoxifen.

Now I have something else that just occurred to me: how weird my left breast feels.

My left breast is where the tumor was removed and where I got the radiation.  It feels completely different from my right breast.  It feels heavier and almost fake.  It’s totally odd but fascinating to me.

I did find on breastcancer.org a post about discomfort post-radiation so I am guessing this is normal.  I do get occasional phantom pain that shoots through my surgical site.

Breastcancer.org has all sorts of stuff on their website I find helpful, incidentally.  Managing menopausal symptoms is one of my new favorites.  They do not have anything on Maca Root, however. Maca also helps with hot flashes, and it is not as far as I can tell a phytoestrogen.

Lordy, I am not ready for orthopedic shoes and thanks to breast cancer I have no choice on the menopause thing.   Of course, it’s all over the map as to what symptoms women in my family have had.    My mother had like two hot flashes and she was done with that – but my paternal grandmother on the other hand (who also had breast cancer in the 1940s and lived into her 90s) I am told did have wicked hot flashes.  I shouldn’t complain because they are not constant all day long (and I know women who have had this issue with hot flashes), but they are damn annoying.

Hot flashes and night sweats, oh my!   Viva the broken internal thermostat!

Today’s quote comes from my friend Cecily’s New Year’s card:

Ordinary riches can be stolen; real riches cannot. In your soul are infinitely precious things that cannot be taken from you. ~Oscar Wilde

 

 

 

 

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the waiting game…

Posted on January 4, 2012 by carla

Yes, I know, I know, life to an extent is about waiting.  And the waiting game is especially not fun when you have to work through phone trees to get a live person to schedule your follow-up medical appointments.  Such was my experience this morning with the phone system of the University of Pennsylvania Health System phone system out at Penn Medicine at Radnor.

I always start calling early, because if you say, make the mistake of calling too close to 5 p.m. it may cut you off….and you can’t as a patient leave a message.

Before Christmas, the last time I had to call I spent 43 minutes on hold one time and 30 minutes on hold the next.   In order to get through to my doctor’s offices I had to leave a slightly unctuous message on Penn Medicine’s “fan” Facebook page.

And oh yes, to add to the frustration levels, this happy prerecorded sing-song voice months and months later still tells you that they have “recently” upgraded their phone system and wait times might be longer than normal.  Why can’t they just have a phone system that is answered?  This “routing” doesn’t work, and all it does is cause issues for patients and the front desks themselves – you see the people who are at the reception desks have absolutely no idea we are out there in fiber optic land on perma-hold.

This morning it took calling three times with an average hold time of ten minutes each call.  Why did I have to keep calling back?  Because the call kept dropping  instead of transferring to a live person.  Two calls left me on hold and then dropped instead of transferring.  The third call kept me on hold for ten minutes and then I got a live person who really did not know what to tell me….because they are on the other end of the obnoxious, inefficient phone system and have no clue that any of this is happening….and I doubt they have a voice to fix it.  They just get to get their ears bent by patient after patient.

I have no idea why Penn Medicine at Radnor wants a phone system that is mocked on credit card T.V. commercials.  Here they have world-class doctors, amazing nurses and exceptional staff … and a phone system that is third world frustrating.  And every person who works in that building knows the phone system sucks, yet while it is broken, no one fixes it.

For me, patience is sometimes a virtue I have yet to discover.    But it seems to me that if I can pay my doctor bills and co-pays when they want, I deserve to be able to get through to my doctors more easily when I have to.  And now that I have had breast cancer, I just seem to have more appointments, which means more calls to schedule, more calls to pre-cert, prescriptions to fill.   I don’t need irritation stress, do I?

I know I am not alone in my complaints of this phone system, so feel free to leave a comment.

And Penn Medicine?  I am putting this on your Facebook page in the hopes you will fix your convoluted, frustrating as hell phone system.  Your doctors, staff, nurses and oh yes patients deserve better.  Personally, I am sick of being tortured by your system.  People do not want everything replaced by phone prompts and sorry but I think plain old-fashioned human beings are more effective.

 

 

 

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welcome to 2012

Posted on January 3, 2012 by carla

On January 1st it was 7 months since my lumpectomy a/k/a partial mastectomy.  The hot flashes kick my ass late at night sometimes, and I have to say Tamoxifen is also messing with my moods.  I don’t like the messing with my moods part because I am tired from waking up with hot flashes in the middle of the night, and some days everything is a little too magnified.

This time last year I was bruising myself on self-breast exams worrying about my lump growing.  As you all may or may not know, it took until Good Friday last year to get a needle biopsy because although everyone knew the lump was there, it wasn’t showing as anything unusual on the mammograms for months.

I resisted the urge to write another post on you know, the only woman to have breast cancer in this country, E! News correspondent Giuliana Rancic.   I think T.V. wonder woman was a fool to go back to work barely two weeks after a massive surgery – which is what a double mastectomy is. 

Giuliana Rancic in my humble opinion is setting a bad example, and she is someone who COULD afford the time off. I was given no time off after my surgery or during 7 weeks of radiation – the time I took I had to make up – and I pay my own health benefits too. I would have loved the luxury of time off.   Truthfully I was amazed how long it took to recover from a partial-mastectomy/lumpectomy and radiation.   Women need all the support that they can get during breast cancer and people right or wrong look at celebrities as examples so some woman out there is going to want to take more time to heal and you watch someone else will say “whatddaya mean you need more time? that Giuliana chick on TV didn’t need it.”

Ultimately, Giuliana Rancic‘s decisions are her business, but as a public or pop culture figure, I think she has a higher responsibility.  And rushing after any breast cancer surgery I think having been through it  even on my scale is foolish on her part.  We’re not all shrinking violets on this bus, but anyway, that is just my opinion.  I also hope for her sake her choice NOT to do radiation at a minimum doesn’t come back to haunt her. You can always adopt a baby, or if you are a well to do celebrity, you also probably could have the option of harvesting eggs to have a child.   I would not have rolled the dice with my life just so I could say I was able to produce a child out of my womb. But then again, I have lived for years with the reality that I could not bear my own children – just one of those things, nothing to do with breast cancer.

So, I read today on a Facebook page for survivors I belong to that a high intake of starchy foods/carbs increases breast cancer recurrence.   I also discovered from the lovelies that breast cancer survivors benefit from meditation:

The researchers……found that breast cancer survivors’ health improved after they learned Mindfulness-Based Stress Reduction (MBSR), which incorporates meditation, yoga, and physical awareness.

“Post diagnosis, breast cancer patients often feel like they have no control over their lives,” Armer said. “Knowing that they can control something — such as meditation — and that it will improve their health gives them hope that life will be normal again.”

Yes indeed.  Can we talk about the change of control?  It’s a big deal.  I still have moments where I feel completely overwhelmed by all that has happened.  Of course, when I have those moments it can freak people out, so to be honest I try to have these moments in private as in no one is around.  A lot of people  still expect me to be some kind of wonder woman 24/7, but I have to tell you I am not made that way.   And I am warning all of you now, that if I have these moments, you might not understand them unless you have had breast cancer and that will just have to do.  This all might sound quite selfish, but I am discovering I need the little luxuries of being able to let my hair down completely.

New Year’s Eve we were with dear friends and it was a perfect mix of kids and adults.  I was so happy, and then somewhere around 9 p.m. it hit me all that I had been through in the past year, and year preceding breast cancer.  It completely overwhelmed me and was glad I had the excuse of a wicked hot flash so I could go outside by myself for a couple of minutes and get my act together.  Seriously, it was like zero to sixty of emotional realization.  When I was in the midst of dealing with breast cancer as in surgery and treatment I kept on moving.  I think in retrospect, I was almost scared to slow down.  I did not want to lose my courage (or momentum), as it were.  But then there I was on New Year’s Eve looking at the loving faces around me, and it just hit me.  I am o.k., trust me.  I was just temporarily overwhelmed by the magnitude of it all.

2012 will be another year of change for me as my sweet man and I go about the process of combining households together.  I discovered yesterday that I still have a couple of frissons of worry every now and again thanks to the ex factor.  Why?  Because the ex asked me to commit my life to his and then took off.  And refused to ever talk about it.  I never had a conversation with him again except to tell him Labor Day 2010 that I had to put his dog to sleep (she had gotten dumped too, you see). 

I put my own period on the end of that sentence and was truly grateful to God that I had never in the end married him, but once someone does something like that to you, well, it leaves a little residue.  Add to that the year of living dangerously with breast cancer, and well, there are just moments.  Fortunately for me I now have the love of a truly good man.  He is very patient with me when even I with my big mouth can’t get crap out of my mouth to articulate what the busy brain is fretting about.

Now I also want to touch on one other thing I am discovering – that like it or not breast cancer has left body self-image issues.   I am now a 1 6/8 boobed woman.  It doesn’t bother me every day, and doesn’t bother me enough to do some kind of breast reconstruction, but some days I am super self-conscious about looking uneven. 

We live in a society where the media and fashion industries are body obsessed and what you see on T.V. is rarely a real woman, but someone so augmented and tweaked that I doubt even some of them can find their true selves.  So for 2012, I will do my best to be as healthy as possible, but I am not going to beat myself up for not having a perfect body. 

I am alive, and I am not unattractive, so there we have it.  (This is of course is why I am still all for a breast cancer as art project).  What I said in June a couple of weeks after my surgery was:

I have this whole idea, and I am sure it has been done only I can’t find it yet .  Examples of a project  – a self-portrait project even that focuses on the positives – i.e. simply being alive.  Yes, you have to pay homage to the changes in your body…I am trying to hit each new thing head on.   It’s this weird “if I can look at it I can deal with it thing.”

Anyway, just a thought.  A kind of my body, myself for breast cancer patients and survivors.   You could build some fabulous openings and gallery openings around this.  I envision this whole big thing say during a breast cancer awareness week, month, whatever.

Enough of today’s flowing stream of consciousness.  Happy 2012 everyone!  And a special shout out in part to  the lovelies on Beyond The Pink Moon – this group was started by author Nicki Boscia Durlester and bears the same name as her autobiography. The other special shout out goes to my Driving Miss Daisy ladies.

Today’s quote is for the inner scribe alive in all of us:

The art of writing is the art of discovering what you believe.

— Gustave Flaubert

Until we blog again, have a good day all!!!

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