breast cancer scam callers, 2015 edition

Posted on February 16, 2015 by carla

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It has been a while since I got a breast cancer scam phone call, but I got one tonight. It came in from Hershey, PA and the number is 717-298-5071.

A woman asked for me by name. It was partially a live person and partially a robo-call. They claimed to be calling on behalf of a breast cancer charity that helped cancer patients get meds. They did not name the charity.

But when I asked “Who is this? What charity is this? How did you get my name?” the call magically disconnected.

Can you say scam?

When I tried to call back all I got was busy. I have been trying to look up the number and on the Internet this is what they say:

Got a call from this number, when my son asked who was calling,they hung up. Second time they called. Reverse-searched it and someone said it was soliciting donations for Breast Cancer, but not official.

They called this evening saying they were collecting for breast cancer to help women who can’t afford there medication told them we don’t donate over the phone don’t call

Ok, so we know what this is.

A scam.

Delete, block, repeat.

Legitimate breast cancer charities do NO do NOT do NOT employ telemarketers and robo calls.

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emotional “warrior” ? or woman first?

Posted on February 5, 2015 by carla

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I saw a media inquiry fly by on social media overnight:

“XYZ wants to tell the first-person story of someone who’s closed the door on cancer — maybe you just don’t identify with being a “warrior” anymore.

Are you sick of wearing wearing pink? No more room on your wrist for awareness bands? After treatment, what does it take to move on emotionally?”

I responded. And not so much because I need to be featured in some news story, but because once again I think this is a question posed by someone who has never had the disease.

I might be a warrior in a sense but I’m also a woman. And I am a woman first. And the question they posed doesn’t just have one answer.

Ok I have said it many, many times before: breast cancer isn’t about any pink plastic crap or green plastic crap or cutesy little buttons and ribbons.

It is a very public disease with a very private face.

And moving on emotionally depends on your state of mind. I chose to not only be very open about my breast cancer but I made the conscious decision to be positive. I’m not Sister Mary Sunshine all of the time but I’m alive and I am living.

And again, the thing is about their question is it is not a completely cut and dry answer. You can move on from breast cancer but it is forevermore part of you and who you are. It doesn’t have to define you, but it is part of you.

So it’s not so black-and-white where you can say “I moved on emotionally” , because even if you don’t dwell on it every day it’s there because you’ve lived it. So you can only be the best person that you can be and allow for human frailty.

I have days where I look in the mirror and I’m not in a good place. You and your body change so much after breast cancer surgery, treatment, and the onset of breast cancer meds. But I always try to count my blessings and I am so grateful to be alive and I know I am one of the lucky ones.

But how you are emotionally and moving on after breast cancer depends first on yourself as the person who has experienced the disease first hand, and it also depends on the type of people who surround you and your medical care team. My doctors and nurses have always been straight with me but their incredible positive outlook has helped me as well. They have told me since my diagnosis that I’ve got this and I can do this and so far they’ve been right! And the people in my life who were there on a personal level not just a medical professional level have had a similar positive outlook. The people who decided they had to be depressed for me and negative for me and made my cancer about them? They aren’t around so much anymore.

The emotions of breast cancer and surrounding breast cancer and post breast cancer will never be cut and dry. I have learned to accept that.

Be your best you that’s all you can do. And if you’re having a hard time coping emotionally find a therapist to talk to. There is no shame in a little emotional tuneup every now and again.

And incidentally? I still don’t wear much pink and it’s not because of breast cancer it’s because I’ve never worn much pink. But pink I will always identify with proudly? Being part of The Pink Moon Lovelies. Check them out!

Thanks for stopping by!

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men and women and breast cancer

Posted on January 30, 2015 by carla

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The photo on this post has nothing to do with the post. It was just a photo I snapped in Lancaster County, PA last spring of a solitary looking Amish farm woman. So anyway, in my breast cancer group recently there have been discussions of when women with or who have had breast cancer are dating how do you tell the person in your life you have or had breast cancer? How do you tell those you are dating about this?

Maybe that’s where the photo comes in after all, as when you have breast cancer you do feel solitary at times even if you have people and/or family around you. It’s a disease that can narrow your focus until you get back to the business of living.

This woman asked how she tells people she’s dating she has breast cancer. She’s not the first one to ask this. I totally get it because even though I have been open about having had breast cancer and being a breast cancer survivor who is under active treatment until I’m through all my meds and so on, I totally get where she’s coming from.

When I received my diagnosis, my sweet man and I were together and falling in love but we weren’t living together. We were dating even if we were already in a committed relationship. And I remember distinctly when I got the phone call from my surgeon saying it was cancer how I felt. The room literally spinned, and my mind raced. And for about five minutes I dropped the F bomb a lot.

My sweet man was my first phone call, but still before I picked up that phone my mind went back-and-forth over how to tell him. In the end I decided to just tell him and trust and believe in the person I knew him to be.

My momentary hesitance and telling him had less to do with him at the time and more to do with me and what had preceded him. And like it or not, (and I say that because I have been told my ex fiancé hates when I refer to the end of our relationship in my writing), the reality of my life is that the year before my diagnosis with breast cancer I was abandoned.

My ex fiancé took off one night screaming and yelling and having a fit in a blizzard. I literally stood in the entryway of my home and like it was in slow-motion watched him take off. He not only abandoned me and are 8 1/2 year relationship, but he left his old dog with me too. And I still think the fact that he never came back for his dog was the worst thing about that.

I was a grown-up I had experienced loss and break ups before, but a literal abandonment like that is a whole different set of emotions to deal with. There was never a conversation or any visits to any sort relationship counselor, one day it was a relationship the next day it wasn’t. And you have to deal with those emotions while going on with your life, because what are you supposed to do? Stop living? No, you have to change the locks and move on, but the feelings linger. His cowardly leaving was the best thing that happened to me in years, but it still didn’t make on through it any easier.

So I get the whole fears of not only being single when you get your diagnosis and go through treatment and start your life after cancer, but the fears of telling the men , any men in your life you have breast cancer.

My mother and other women I know have told me many stories of men who evaporated when their wives, daughters, and girlfriends were diagnosed with breast cancer and other forms of cancer. These men make the cancer about them not about supporting the woman who was fighting. And I think that is part of what drove my decision to just basically blurt out to my sweet man that I had just received a breast cancer diagnosis. I knew in my heart he would be there. And he was.

My sweet man’s first comment to me after I blurted out the fact that I had breast cancer and that I knew it was a lot to dump on him by telling him but I kind of needed to know right then and there if he was in or out still makes me tear up with happiness. And I had actually said to him that if he couldn’t handle it I would understand but he would have to go. His response to me was quiet and I will never forget it . He said “so when do we go see your breast surgeon?” And he is still here today. Oh how I love him.

But I know I am lucky. I myself have known women who have had the men in their lives take a walk when they got a cancer diagnosis. One was a former neighbor. Her story went something along the lines of what she was being treated for breast cancer she found out her husband was having an affair. She got to go through a divorce, fight for custody of her child, and have chemotherapy.

And honestly? There are some men I know who were never anything but friends that when I told them I had breast cancer never really spoke to me again. But I decided the hell with them and moved forward. My cancer wasn’t about them, I wasn’t wallowing in it, I wasn’t asking them to do anything for me, I was merely telling them what was going on in my life. But then again there were plenty of women like that too. Seriously there are women who seem to think that they can catch it from you and will basically tell you shouldn’t talk about things like “that” in public. Quite frankly, the hell with them too. Life is too short to worry about people like that.

Breast cancer affects the core of a woman’s femininity. So there’s a lot to get used to as it there’s a new reality for every woman once you get a diagnosis…..But I still believe the being honest about your disease is the way to go. How you tell someone is your business. But the thing is, a truly grown-up good man or woman is not going to be phased by little breast cancer. Real people understand that your breast cancer isn’t about them.

I know that there are women out there who have had issues with the men in their lives being repulsed by their scars, let alone being unable to deal with the fact that the women in their lives had breast cancer. If a man can’t see the beauty in the scars you bear is the symbol of your survival of the disease that takes so many, and you know what? They aren’t the person for you.

Tell people or don’t tell people about your cancer. It’s your choice, it’s a personal choice. But I found being honest about the disease made it easier to live with it, and I still feel the same way. I still have people who find out almost 4 years after the fact that I was treated for breast cancer and their first reaction is “I’m so sorry”. I don’t need them to be sorry and I appreciate it that it’s often an awkward thing you don’t know what to say, but I’m here and I’m alive and that’s the bottom-line.

My last comment is breast-cancer taught me a lot about interpersonal relationships. It gave me a lesson in who my friends really were and the goodness of human nature. It taught me to let go of a lot of negativity in my life. In a bizarre way it has freed me and made me a better person, or maybe it just reminded me that I was a good person all along.

Ladies out there going through this currently, you aren’t alone. Keep the people in your life that matter and let the rest of them go. It doesn’t mean they are bad people there but people just means they aren’t right for you. Focus on the positives and let the negatives of things you can’t control go.

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update on healthcare drama, or can you hear me screaming

Posted on January 29, 2015 by carla

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I don’t really drink but dealing with health care in the advent of the Affordable Care Act otherwise known as Obamacare is enough to make you start.

Actually that’s an excellent idea! Somebody should invent the Obamacare drinking game.

I have tried everything to try to get Aetna to talk to me about my issues as an existing subscriber and over the past couple of days I even have been resorting to tweeting at their chairman and Aetna in general. (@mtbert and @aetna and @aetnahelp)

Anyway I took a look at the calendar today and realized on top of all my other issues with Aetna I had not received an invoice. After all you need an invoice to pay your next month’s healthcare premium.

So I took a big deep breath crossed my fingers and made another call to the member services number. Remarkably for once I got a stateside call center. The Philippines must’ve been on vacation. (Do you sense sarcasm? Good! I meant it.)

I got this really nice lady who confirmed my worst nightmare fears: that I had been put into a plan by Aetna that after being told by Aetna all my doctors were in it, to find basically none of them were in it.

Yes, seriously. At this point I was silently screaming in my head. so this lady promised she would send this up the food chain and call me tomorrow.

I got off the phone and my head was spinning and I was filled with what can only be described as a sense of pure panic. How could I have spent all those hours with Aetna representatives going over plans to ensure I have the coverage I needed only to pay for a plan that had none of the coverage I needed?

So as I sat in my family room trying to absorb the craziness of everything involving my healthcare all of a sudden the phone rang. it was someone from Aetna, someone from the Nashville office who had originally put me in this plan that has caused nothing but problems since I paid the premium to bind it.

Almost 3 hours later I think I have a new plan. And what I learned is I never should’ve been shown the plan that I have started 2015 in. What I also have learned is basically if you’re a breast cancer survivor and you need a certain level of care most HMOs are not gonna do it anymore. I have had to switch to a PPO. And yes it’s considerably more expensive. But I don’t have a choice I can’t play Russian Roulette with my health.

I think this is set, but this guy said he is going to call me back early next week.

I am exhausted after this whole ordeal today. It boggles my mind that I’ve always kept myself covered by health insurance and,well, I thought it was a hassle before, it is worse now to deal with I feel. And why is it that we as Americans have to go through this? It’s crap.

My answer to my somewhat rhetorical question of course is politics and corporate America. I will say it until it changes, if it changes. There is no point to “reforming” healthcare in this country if they are not also going to reform the actual insurance companies themselves. I also think politicians need to keep their political agenda out of our healthcare as well.

Like everyone else I know, I am not asking for a handout, I am only looking for the healthcare I need to maintain at a price that allows me to breathe and pay for everything else in my life.

Personally, I feel that for what Aetna has put me through in the past few weeks that I not only deserve good customer service, they should be throwing me a bone and knocking some money off my premium for aggravation and time wasted. But that won’t happen and basically I will just be lucky to get insurance that gives me the coverage I need finally.

It shouldn’t be so god damn difficult to get sufficient to your needs healthcare coverage as a breast cancer survivor or anyone else in this country. In a nutshell it’s bullshit. And I know I don’t normally curse on this blog, but enough is enough already.

Needless to say I’m holding my breath and won’t relax until I know this mess is all straightened out with Aetna.

Thanks for stopping by.

Posted in breast cancer, health insurance | Tagged , , , | 2 Comments

continued problems with aetna

Posted on January 28, 2015 by carla

 

aetna 3Seriously, I am ready to cry I am so frustrated and stressed out by Aetna thus far in 2015. Recently (as in a couple of weeks ago) I wrote about Aetna issues .  Nothing has changed, but the issues have compounded and grown.

Well not completely true….one of my issues was rectified….sort of….  I had never received an I.D. card for my shiny new convoluted plan after they figured out after multiple phone calls finally, exactly, and when they debited the money for it out of our accounts to bind this new premium.  Now I have THREE plastic I.D. cards for the PA Aetna Gold $0 (Zero Dollar) CoPay HMO Savings Plus PD plan. And oh goody they ALL say “Invalid Choice” in the PCP line. That is because some people at Aetna (like the Social Media Customer ServiceSocialMediaCustomerService@AETNA.com in case you need the e-mail address) say my primary care physician with the University of Pennsylvania Health System/HUP/Penn Medicine/Penn Health for Women  is NOT part of my new plan although OTHER people with Aetna out of Nashville, TN (who sold me the plan) say they can clearly see my doctor as being part of the plan.

Of course calls to my healthcare system (HUP/Medicine/Penn Health for Women) isn’t quite satisfying on this issue either. All they could tell me is that they did not understand why anyone at Aetna would tell me that my doctor wasn’t covered because the only Aetna plan that anyone there knew of NOT taking Penn Doctors was ONE Medicare or Medicare supplemental plan. And while I have hit the half century mark, I have not reached the age or need for Medicare!  Penn gave me their provider number (1326154741).

So the WTF cloud of Aetna mystery remains. I don’t know for sure that my primary care physician or any of my specialists can be seen and will be covered! I have doctors appointments and mammograms to schedule!!!

And P.S. when I spent hours and hours calling Aetna two weeks ago until I finally got through to the guy in Nashville who sold me on this plan and signed me up I was told  this was being escalated to a supervisor to fix….but I have heard nothing.  Nothing. Again I ask WTF am I paying for? Why did I spend hours verifying all of my doctors would be on this plan only to spend weeks not being sure and afraid to make appointments because I am afraid I will get wopping hospital and doctor bills???

I am so stressed out I am ready to cry.  I spent hours of my life going over all the new plan choices so I could have the care I needed (and thought I was paying for).  Breast cancer patients and even breast cancer survivors like myself under active care need continuity of care.  But I don’t know what I am paying for and if I make a misstep in this convoluted healthcare system we must live in I could potentially cripple my family with hospital bills!

And speaking of paying for, it is the 28th of January and I still haven’t received an invoice for February from Aetna?!  HOW THE F am I supposed to PAY??? Am I supposed to mystically receive a vision through the air that has all my invoice information on it? Are they doing this so subscribers pay late and then they can cancel them for non-payment?

And then there is the matter of the letter that says my full pharmacy benefits will take effect soon?  Again, WTF Aetna? “As of January 1, 2015 your pharmacy benefits and insurance plan with Aetna took effect. However, the required installation is not fully complete.” Is this insurance speak for “whoopsies”?

Is this all the fault of Obamacare or partially so since our ridiculous warring politicians in Washington DC can pad legislative bills on the way to becoming acts with dumb ass political payback and largess but actually can’t legislate anything effective?

So now supposedly everyone in the USA is covered or can have health insurance coverage but what are they covered for and covered by exactly? And why is it everything is STILL so expensive, or truthfully even more so? (Insurance companies tout “affordable” insurance prices and then you read what the “affordable” actually gets you and how many doctors and hospitals won’t take it.)

And how is all of this not going to derail down the road since nothing about Obamacare actually reforms insurance companies themselves?

Why do I as someone who has always kept herself covered by insurance even when I wasn’t working feel like I am being punished ?

Health insurance in this country is a bigger mess than ever. Republicans and Democrats you are ALL to blame, not just Mr. President who in theory had a good idea….and then politics got in the way.

If you are having health insurance issues, post a comment. I am NOT offering to help, I can’t. But misery loves company.

I can see I am spending more time on the phone today.  Hopefully I can make it out of the Philippines call center for Aetna this time. Most of the time now you can’t. And I do not get why if my issue was escalated to a supervisor why it is in TWO weeks no one can pick up the phone and call and talk to me? I wonder how many people with Aetna are having similar issues to mine right now?

Grrrrr. I survived breast cancer thus far. I am not sure I will survive Obamacare or whatever you  want to call the brave new world of health insurance in the USA.

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Posted in breast cancer, health insurance | Tagged , , , , | 1 Comment

russian roulette with health insurance 2015

Posted on January 14, 2015 by carla

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Oh Aetna, how can you terrorize me? Let me count the ways! (Do you like the healthcare dart board I designed?)

So….you know I am soooooo thrilled with how well Obamacare err the Affordable Care Act is working out so far.

Do you sense sarcasm?

Damn straight.

Healthcare in this country is still a hot hot boiling hot lava coated mess in my humble opinion.

When the “window” opened in November, Aetna forced everyone out of their old plans and into their sparkling new ACA compliant plans (and got rid of dental but that’s another story).

I spent hours going over plan choices by myself and on the phone with Aetna Representatives.  In the end a representative from Aetna out of Nashville talked me into  the PA Aetna Gold Zero Dollar Co Pay HMO Gold Savings Plus.  Yes the darn plan has more last names than a Real Housewife on Bravo. I still don’t know if I have it straight.

But anyway.

In the end it came down to I did not mind paying more for continuity of care. As a breast cancer survivor in active treatment continuity of care is CRUCIAL, correct? I am not only lucky to be alive I am lucky to have really and truly amazing doctors.

I was told not once, but multiple times every single one of my doctors was in my new plan.

The first Aetna cluster poof  (see I am trying to be polite) occurred in when they were taking out the money to bind the new policy.  First it was the end of December 2014, then it was December 15th, and then it ended up they zapped it out of the account around November 17 or 21st (I forget which date, I am a haze of stress right now).

When trying to figure out what was going on with my new plan I had to call back customer service a few times.  I magically found myself transported to an off-shore call center in the freaking Philippines.  Really nice people, serious language barrier as they were lacking a true working knowledge of colloquial American English. Sorry, it’s true.  And where I used to work actually had an office in the Philippines so it was like déjà vu only in this scenario no one was paying me to be frustrated.

The Philippines people are super pleasant but unable to deviate from a script.  All they kept trying to do was sign me up for auto-pay. After a few calls I figured out if you demanded long enough they would transfer you state side. That is how I ended up in Texas and the nice Aetna lady solved the mystery of when and how the binding premium payment was happening and sent me a premium paid letter.

But January 1st rolls around and no new Aetna ID card.  So I start calling again.  Once again I get sent to the Philippines. This time I got so frustrated I hung up on them and went to Aetna’s Facebook page where I got a very pleasant Social Media Customer Service Rep who e-mailed me the following today:

HI,

I requested the ID cards please allow 7-10 business days to receive. The PCP
you’re requesting is not a savings plus provider therefore we can’t elect
the provider as your PCP.

Please let us know if we can help in the future

 

WTF in all CAPS!!!!!!!!!!!!!!!!!!!!!!!!!

So I started calling all the Aetna numbers I had.  God smiled and I amazingly and against all odds got the guy on the phone from Nashville who talked me into my plan.  He pulled everything up again and still shows my doctors as being on my plan in his system.

So WTF Aetna? How many systems do you have?

I have now put this back to Aetna to deal with but Christ, I do not need healthcare drama.  I had enough in 2014 when they (Aetna) wanted me to leap off the operating table after a 4 1/2 hour instead of a 1 1/2 hour hysterectomy and go home.

I pay my premiums on time if not early each month. I play by the rules.  All I want is continuity of care. I paid for continuity of care. Bad word bad word bad word.

I have pain in the back of my neck from stress from dealing with this today so I had to write this post to try to release some of the stress. And once again I come full circle: there will be no healthcare reform in the United States until someone actually grows balls in Washington and reforms the health insurance industry.

It’s all still a crap shoot.

Sign me still cancer free and frustratingly yours.

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happy 2015!

Posted on January 4, 2015 by carla

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So that photo above is a gratitude jar. It’s a simple thing to make and it’s something I am sharing with all of you because there are good days and bad when dealing with breast cancer or being a survivor, and we also need to take a minute to be thankful once in a while and mindful of life’s blessings.

The thing about this jar is totally simple: you find your jar, tied up with a pretty piece of ribbon or label it and when the spirit moves you, on a little piece of paper jot down something you are grateful for, thankful for, happy about, an accomplishment, a milestone, something cool that happened in your life, appreciation of nature,something you found funny, and so on and add it to your jar. And at the end of the year, as in December 31, open the jar with your friends and family and share the year’s worth of notes.

We all have things that we can be thankful for, and grateful for. If we are alive and kicking to talk about our breast cancer or other cancers for that matter, that should be number one on the list. Life is a gift and it’s easy to forget that when you’re in the middle of treatment or frustrated with health insurance companies or how people don’t get how you’re feeling.

I know plenty of people who live with metastatic breast cancer, I find them totally amazing. So many of them are among the most positive, inspirational, and forward thinking people I’ve ever met. When I am feeling breast cancer survivor bitchy I think of them. They have to actively manage the disease constantly and I am lucky and at this stage am cancer free.

We as survivors as a totality are often a strange bunch, and I have said before it’s like belonging to a sorority that nobody wants to be in but you’re in it. Sometimes people get us, sometimes they don’t.

Some people are very positive and others are very negative about breast cancer. I have a hard time with those who are very negative. I can’t be around them quite honestly. I know it’s hard to be positive some days, but I really can’t deal with the full on negative. In that vein, I also have a hard time going to funerals of people who have died from cancer that I know, especially breast cancer . It sounds really selfish but sometimes I just can’t do it, I can’t go to the funeral.

So that’s why thought I would post about the gratitude jar here too. It’s such a simple thing, and why not? We have nothing to lose by trying to remind ourselves of the value of life and everything to gain.

I can’t believe it’s 2015, but here we are! I wish all of you out there a happy and healthy year! Stay positive as it makes all the difference when you’re fighting this disease!

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moving forward….forging ahead….

Posted on November 6, 2014 by carla

 

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Yes, I turned these white pumpkins pink. No, I didn’t paint them, just messed with filters in my photo editing program.

So my time as a push me pull you of breast cancer , health insurance, and medicine seems to be tapering off for the calendar year 2014.  Last week, on Halloween no less, I had my annual go in the humming claustrophobic box….errr…MRI machine.  Yes, the test of all expensive annual tests for me, the bi-lateral breast MRI.

Getting the test which has been an annual occurrence as well as a ridiculously expensive co-pay approved was a real bitch this year. Aetna refused the test at first and I did flip out on some Med Solutions woman who called to tell me it was being rejected. First they reject something they have approved annually for multiple years at this point, then they outsource the telling me about that part. So the test request was submitted AGAIN and was thankfully approved.

This time I had a hard time inside the MRI machine. A lot of times I can trick myself into napping while in there, but this time my brain was going a million miles a minute because this time for no good reason whatsoever   I had this completely irrational fear they might find something. So instead of being calm which is the only way to deal with being inside the giant humming box of a machine, I was nervous. So yup, I got HOT FLASHES. Miserable, horrible, full sweat dripping down my face hot flashes. Which totally sucked because there I am face and boobs down in the MRI machine unable to wipe the sweat off my face.

After the MRI was complete I went to have a visit with my oncologist. The oncology office was packed to the gills and so busy that I sat in the lobby by the elevator.

I was 20 minutes early, but they were so busy I ended up waiting just shy of two hours for my appointment. That is truly a major inconvenience, but what am I supposed to do? Complain about the emergency appointments that caused the back ups? No way. Those people needed to be seen more than I did last Friday so I read a book on my tablet (Winter Street by Elin Hilderbrand which was o.k. but not one of her best – it was produced specifically for Christmas so parts of it were very Hallmark Channel and somewhere my sweet man is laughing because yes, I admit it, I love Christmas movies, but I digress.)

The purpose of the oncology visit was to discuss my breast cancer meds post-hysterectomy. They were tossing around the idea of putting me on an aromatase inhibitor until they did the DEXA scan. But the scan turned up osteopenia which is not as bad as osteoporosis, but it is an early warning signal that my bone density is slightly below normal levels.  Osteoporosis is not a thing that runs in my family, but I did have multiple weeks of high dose radiation as part of my breast cancer treatment and as a woman being treated for hormone positive breast cancer I am now also a post menopausal woman who is not on estrogen treatment.

So….the decision is NOT to switch me to an aromatase inhibitor because of the side effects involving bone density. They are keeping me on Tamoxifen.   I will probably be on Tamoxifen now for ten years instead of five. My oncologist called it working with the devil I knew versus the devil I didn’t. They will re-evaluate at the five year mark two years from now, so it’s all still fluid. He said another component in the decision to keep me on Tamoxifen is not only the efficacy rate between it and an aromatese inhibitor for me is very slim, but the side effects could be much worse, but the fact that my Oncotype score was a 10 which meant I was so low that I also did not have to have chemotherapy although I had a long course of radiation.

I am comfortable with this decision on my breast cancer meds and by the time I came home, late that afternoon on Halloween my breast surgeon called to say she had read my MRI already and I was clean, cancer-free, and good to go! I slept really well that night.

silly goatSo now, what else is on my mind? Friends who are survivors experiencing hateful and angry behavior at the hands of fellow breast cancer survivors and those going through breast cancer treatment currently.

I had one friend get taken to task by a woman going through treatment basically because my friend’s treatment was not as harsh as hers and she didn’t have to get chemotherapy.  Ok ladies, look, every case of breast cancer is different, every woman experiencing breast cancer is different. No one can help that and but for the Grace of God go all of us. But it does no good to attack another woman who has experienced ANY aspect of this disease. It is all hard on all of us, but coping with angry and vitriol towards other breast cancer gals? It accomplishes nothing but upset to all involved.

I won’t pretend that I can stand everyone at every moment of the day, and trust me Tamoxifen has made me very intolerant at times due to the way it can screw with your emotions. But the thing is this: I know I am blessed to have survived one round of breast cancer. And I pray that I will remain blessed the entirety of my life and remain cancer-free. I work with that and seek my positives.  We, all as breast cancer patients and survivors, need to work together because no matter what stage of disease or level of treatment, we are our best support system and advocacy group.  We need to be together to survive and thrive. We need to be together to advocate for positive change that benefit us in the healthcare system today and hopes for a cure within our lifetimes.

Breast cancer is not light or pink or fluffy. It’s serious and it sucks. But together we can make a difference and be more positive. And having been through treatment I feel free to preach that remaining positive made all the difference in the world.

Ladies, be kind to one and other.  No one gets this like we do.

Hugs.

 

 

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pink is for roses.

Posted on September 30, 2014 by carla

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Pinkification pukification here we come. Yes tomorrow marks the onslaught of putrid pink things because you know breast cancer is so pink and frothy and light, right? Like fuzzy bunnies, Barbie, and cotton candy,right?

I hate #pinktober. The world gets coated with a putrid pig pinkness designed by marketing gurus to make a buck or two off of breast cancer. And how much actually goes back to true breast cancer research, education, and funding for women who need financial assistance during treatment? The answer is not much compared to percentage of profits and isn’t that true?

Someone said to me today that they worry there will never be a cure for breast cancer because marketing and advertising folks would never allow it. Yes, it was jaded and tongue in cheek but seriously, do you need your greasy take out chicken in a pink bucket? Does your cheap liquor taste better with a pink label? And does pink plastic nonsense make recycling more fun?

Already the hyper-sexualized images of big boobs peeking out of pink and white and just pink bras are popping up. Gee do we think the models are actual survivors?

When discussing the onslaught of Pinktober already in September a friend and survivor said to me:

“I think you have touched on something very important… I remember feeling left out of all the pink activities even while I was in the battle phase … Then there are folks that make doing the big walk sound like a bigger deal than having the disease ( trust me I am grateful) folks want to raise money and educate .. ) finally , I feel like people have heard so much about breast cancer that there is a “well it’s just breast cancer” feeling out there – the context now seems as if it is missing ; understanding of treatment and risk is missing. People who are planning these events should make an effort to know what helps and what hurts.”

One thing this year I am more conscious of is the marketing of Pinktober in schools. And it seems less about real breast health education and awareness and true fundraising and more about pink spirit wear.

I noticed this at my own kid’s school when the school’s publicist posted something in a school group page about a pink dress down day.

Her message said in part:

There will be a school-wide PINK $1 Dress Down Day on Thursday, October 2nd. For $1, Staff & Students may wear pink shirts in honor of Breast Cancer Awareness Month….Students MUST wear khaki bottoms with their pink tops….Breast Cancer Awareness Pink Temporary Tattoos will be on sale for $1 in the main office beginning October 1st….We believe that education is the key to increasing knowledge about breast cancer and fundraising is essential to support further research. Please consider donating to our campaign

I am all for increasing knowledge, raising awareness , breast health education and so on, but where is that here? They have some charity they are partnering with which is based out of the Washington DC and Virginia area but I can’t see where any money raised here is actually going to go. And when I pulled up the charity’s 990 I found yes they are a real non- profit, but wow, what huge overhead!

The problem I have with supporting some of these types of organizations which are often not local to where you live includes their overhead. I applaud anyone wanting to make the world a better place, but as a survivor, I have to say again there are several fine breast cancer charities to get involved with. And these are people that give money to research, education, low-cost mammograms, and so on.

Maybe I am too serious for all of you when it comes to things #pinktober but as someone who had the surgery, the treatment, and who lives on breast cancer meds , I am VERY sensitive to the charities and what they do.

All I am saying is consider charities in the future that are a little more educational. Education is very key to battling breast cancer. What schools are doing is nice, it brings people together, they wear pink clothes but what have their students actually learned that can help keep them and family members healthy?

Breast cancer is serious stuff and serious business for pink themed marketing campaigns. Every year I find myself slightly aghast at all of the pink gear….especially when the articles come out regarding the fine print of what actually goes to education, research, and so on….versus profits and pink themed expenses and overhead.

I think if we are going to teach the future generations, educating them beyond what goes with pink is kind of important.

This is why, once again as Pinktober is about to puketober all over us I am going to mention Taking Care of Your Girls a website and book by my radiation oncologist Dr. Marisa Weiss.

This is the kind of stuff we should be educating with, not pink soup, pink fried chicken, pink temporary tattoos, and cutesy pink spirit wear. We owe the future generations more than that.

I will close with an article from the Wall Street Journal a few years ago which understands why the right kind of education on breast cancer is important:

WALL STREET JOURNAL: HEALTH JOURNAL Girl Talk: Early Education Eases Fears of Breast Cancer
Elizabeth Bernstein
Updated Sept. 2, 2008 11:59 p.m. ET

Two years ago, when she was nine, Jamie Margulies noticed a lump on the left side of her chest, behind her nipple. She was scared, since her mom had recently been diagnosed with breast cancer. “I thought that since she had breast cancer, I would definitely get it,” says Jamie, a 6th-grader who lives in Gladwyne, Pa.

To reassure her daughter, Jamie’s mother took her to see her oncologist. The doctor examined her and set her mind at rest: The lump was not a cancer, but a breast bud — a sign that her breasts were starting to grow.

“That made me feel a lot better,” Jamie says.

Her doctor, Marisa Weiss, says she has witnessed a growing fear of breast cancer among young girls, as information about the disease permeates the media. She also has noticed that girls are either uninformed or misinformed about breast health.

“They are still young girls, without the dialogue skills to ask the questions, air their concerns and replace the myths with facts,” says Dr. Weiss, director of breast radiation oncology at Lankenau Hospital in Wynnewood, Pa., and founder of Breastcancer.org, a nonprofit educational organization.

Together with her teenage daughter, Isabel Friedman, Dr. Weiss co-wrote a new book “Taking Care of Your ‘Girls’ “, which hits stores today. Written for girls and teenagers, it offers information on topics such as breast development and size, choosing a bra, how to stand up to teasing and what healthy foods to eat during this time of growth. Throughout the book, Ms. Friedman, who is 18, gives advice and tells stories from a peer-to-peer perspective.

Dr. Weiss’s book is an extension of an educational program that she and her daughter have been presenting in schools to girls in grades 5 through 12 and their mothers. ……Dr. Weiss then gives the girls medical information. She explains that breast cancer is exceedingly rare in girls under 20 and that only one in 10 cases of breast cancer is thought to be due to an inherited genetic abnormality. She describes the steps girls can take to reduce the risk of getting the disease, such as keeping a healthy weight, exercising and not smoking. She also advises them to maintain a healthy diet, including limiting consumption of red meat and fried foods.

It’s especially important that girls receive this information at ages eight to 18, she says. “That’s when they are using food, water, beverages and the air they breathe as building blocks for breast tissue. They are laying down the foundation for future breast health.”

…..Information about breast health and breast cancer can be found at http://www.breastcancer.org, and people can ask their own questions at http://www.takingcareofyourgirls.com/main/contact.html.

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Ladies and gents…please…think before you pink.

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winter in my heart

Posted on September 26, 2014 by carla

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This afternoon, I am sad. And yes, it feels like winter in my heart.

Recently I wrote about a woman in my breast cancer group.

Her name was Barbie Ritzco.

Barbie passed away early this morning. My friend Nicki told everyone in the group. She said:

Dearest Lovelies,

Our Warrior Queen, Barbie Ritzco, passed away peacefully in the early hours of today surrounded by her devoted family. We ask that you keep the Ritzcos in your loving thoughts and prayers.

A life well lived cannot be reduced to a few lines on a piece of paper. Certainly not a life like Gunnery Sergeant Barbara Ritzco. She lived a courageous life. Her indomitable spirit inspired all of us to live each day to the fullest. She never gave up and today she rises.

She once posted the following on her Marathon Barbie page…

Wake up and leave your mark on the world. “I aspire to inspire before I expire.“

Mission accomplished Marine! Today, Pink Moon Lovelies around the globe stand and salute you.

Long live the Warrior Queen of Pink Moon!

In lieu of flowers the family has requested that donations be made to the following:

The Semper Fi fund, http://semperfifund.org/

The Scar Project http://www.thescarproject.org/

flatandfabulous.org http://www.flatandfabulous.org/

Barbie wasn’t a close friend of mine, we were just members of the same breast cancer group. But her death is a loss I am feeling quite keenly. And the reason for that is simple: she was remarkable and brave.

Today is just going to be a God-damn- you – breast-cancer kind of day. Barbie’s passing is right as Pinktober is set to begin. Most survivors I know hate the month of October for it’s fake frothy pinkness which has nothing to do with this disease. Or how we feel when we lose one of our own.

This October please don’t waste your money on pink plastic crap. If you want to do something meaningful, please look to give to one of the charities above in memory of Barbie Ritzco. Or look to responsible charities like breastcancer.org and Living Beyond Breast Cancer.

Barbie was an amazing woman. Who also served our country in the United States Armed Forces.

Barbie was #TrulyBrave

Rest in Peace Warrior Queen.

You mattered.

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