fight smart

Posted on March 31, 2015 by carla



Painting by American Artist Richard E Miller (1875-1943), and titled Reflections at the Dressing Table.

Okay I’m going to say something here which will undoubtedly ruffle feathers.  It has to do with tamoxifen and other breast cancer drugs, oncotype scores, and taking yourself off your meds….without discussing it with your care team.

Do I like what tamoxifen has done to my body? Hell no. But I don’t want to die from a breast cancer recurrence either. So I will stay on this as long as my doctors say.

Radiation gave me osteopenia, so after a couple years on tamoxifen and a full hysterectomy I was not a candidate for aromatase inhibitors….because they contribute to bone density loss among other things.

One of my friend’s mothers was a test patient for tamoxifen when it was first being introduced over 30 years ago. She is living proof that the drug works.  I don’t believe I’m part of some pharmaceutical conspiracy other then I think the cost of drugs a ridiculous even when you have health insurance that supposed to be good.

I am sure about one thing: there are no easy answers when it comes to breast cancer. But I would rather be alive. So when I see threads of conversation in breast cancer support groups where women essentially musing to take themselves off of their meds, it upsets me greatly. I also have to bite my tongue and resist the urge to say anything most of the time.

Adverse reactions  breast cancer meds like tamoxifen, even those ones our friends and family can’t see are very real. Which is why I also get upset when you have ignorant people who have not been through breast cancer, let alone ever taken a breast cancer drug like tamoxifen and they say things like the side effects are psychosomatic, or in layman’s terms made up in our heads. Anyone who says that to you is a truly ignorant person and you should feel free and no uncertain terms to tell them that. 

They are as bad as the ones who come to you with the names of several plastic surgeons when you’re barely out of surgery.  I had that happen to me and it was very upsetting. I didn’t even know at that point if they had gotten all the cancer out and if I was going to be having radiation treatment or radiation and chemotherapy. I felt crappy and I know these people were trying to help but all they did was make me cry when no one was around.  

Trust me, I suffer with the whole self body image worse after breast cancer. I look in the mirror and I have breasts going into different directions because one is only part of a breast at this point.  But , I still think I made the right decision when I decided to not have breast reconstruction. I know in my heart of hearts that I am just not a woman destined to have reimagined boobs. 

I also wish to remind those who talk about their oncotype scores, especially when they are low. Mine is low – it’s a 10 – but my score and everyone else’s is predicated on the presumption that I am going to have treatment and take breast cancer meds as a preventative.

I know taking these drugs is hard – I’m doing it and I am looking at a potential of 10 years – they will reevaluate me at 5 years which is in a year. But we shouldn’t be playing doctors on ourselves. 

So if you need a change of meds or you really can’t tolerate the meds you are on, for the love of God don’t just take yourself off something. Go to your doctor. For example, the different generics of the breast cancer meds affect women differently and it’s not necessarily because of the actual drug it’s things like the binders and inert additives that cause the reactions. I discovered that the when I went from having annoying side effects of tamoxifen to I really felt sick – they had changed my generic, and the formulation is not 100% the same from generic to generic. So needless to say at my local pharmacy there is now a note from my oncologist and my hospital system that I only be given specific generics. I actually wrote about this when it happened someplace on this blog.

My final comment, is that we all have to remember that each cancer is different in each person. Sometimes  we see people talking about their reactions to meds, and there is a very good chance it won’t necessarily affect you or affect you in the same way. 

I discovered my inner courage fighting this disease, and I urge all of you to remember that you have that steely core within you. Breast-cancer hits the core of our very femininity, no doubt about it.  Not trying to downplay it. I just believe that every woman needs to make smart decisions, not necessarily ones based on vanity.

Posted in breast cancer, health insurance | Tagged , , , | 5 Comments

is ignorance bliss?

Posted on March 25, 2015 by carla



I wasn’t going to write about this or at least not right away. But now I am, because the ignorance out there is astounding. Is ignorance blisss when it comes  to female cancers? I don’t think so.

I am not a big fan of some of the celebrities or reality show types who publicly disclosed their breast cancer and breast cancer choices in the past. A lot of them just use it as free PR for their career and that is distasteful to me.

Angelina Jolie Pitt has used her celebrity for good and almost everything she has done including breast cancer. She has a very personal connection to the disease called cancer  given her familial history and loss.

All the irony is, almost a year to the day of my own full hysterectomy comes her story in the New York Times.

The Opinion Pages  | OP-ED CONTRIBUTOR 

Angelina Jolie Pitt: Diary of a Surgery

LOS ANGELES — TWO years ago I wrote about my choice to have a preventive double mastectomy. A simple blood test had revealed that I carried a mutation in the BRCA1 gene. It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. I lost my mother, grandmother and aunt to cancer.
I wanted other women at risk to know about the options. I promised to follow up with any information that could be useful, including about my next preventive surgery, the removal of my ovaries and fallopian tubes.
I had been planning this for some time. It is a less complex surgery than the mastectomy, but its effects are more severe. It puts a woman into forced menopause. So I was readying myself physically and emotionally, discussing options with doctors…Last week, I had the procedure: a laparoscopic bilateral salpingo-oophorectomy. There was a small benign tumor on one ovary, but no signs of cancer in any of the tissues….It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.


And there is the key: knowledge is power. Yet given some of the people leaving comments under major media outlet articles you would think we were living in the stone ages.

Take the USA Today article which says in part:

While advances in genetic testing have given people such as Angelina Jolie a wealth of information about their risk of disease, science offers them far fewer ways to act on that knowledge.
Thanks to sophisticated genetic screenings, Jolie was able to find out that she carries a mutation in a gene called BRCA1, which dramatically increases her risk of breast and ovarian cancer.
But the range of prevention strategies available to her — including medications to reduce the risk of both cancers and screenings to find breast tumors early — was much more limited.USA TODAY
Testing for ovarian cancer: What you should know
In the end, she opted for the oldest of all cancer treatments, surgery, which reduces cancer risk for women like her more than any other therapy.


Here are a couple of the comments:



Those comments made me think and whisper quite a few four letter words. Have these guys ever had breast cancer?  I have. Many of my readers have, or friends or loved ones have. And there are no “easy decisions”. Their ignorance is astounding and actually typical for POS Neanderthals.

 I had a full hysterectomy a year ago now it was to prevent further cancers. if I hadn’t had the hysterectomy I was indeed headed towards secondary cancers of reproductive organs based on what they took out of me. So they can just sit down and shut their mouths because they have no idea what women go through when it comes to this. Maybe if someone told them they had to cut off their penis or testicles they might get it but even then I find it doubtful.

I didn’t want to have to go the route of a full hysterectomy, but I’m glad I did. Even if to be brutally honest I hate menopause. Menopause brought on by breast cancer sucks. Women in my family had sleep issues with menopause but I’m the only one that ever has  had hot flashes. I also don’t like the emotional changes and I hate the fact that my skin is dry like the Sahara desert most of the time. 

But the alternative was far more unpleasant. I am alive. And I have further reduced my chance for a recurrence of breast cancer and occurance  of a secondary  cancer.

And the giant fibroids and septating cysts are gone.

I applaud Mrs. Jolie Pitt for using her celebrity for good. She is raising awareness in a way that it needs to be raised. Menopause is not a dirty word anymore than breast cancer and neither is hysterectomy. We need more awareness on the topics, more choices, more medical care, more insurance coverage and fewer ignorant  comments from Neanderthal armchair keyboard  quarterbacks.

For another article on the topic read this one from the Atlantic:

Their Bodies, Ourselves

Angelina Jolie, in publicly airing the details of a surgery that forced her into early menopause, is taking an activist approach to oversharing. 
MAR 24 2015, 2:28 PM ET

…She’s also breaking a cultural barrier, though. In her essays—the one published today is the sequel to a piece Jolie wrote in 2013, detailing her decision to get a double mastectomy—Jolie has emphasized the fact that she still feels, despite and even because of the surgeries, fully feminine. “I do not feel any less of a woman,” she wrote in 2013. “I feel empowered that I made a strong choice that in no way diminishes my femininity.” Today’s essay echoes that sentiment: “I feel feminine,” she notes, “and grounded in the choices I am making for myself and my family.”
This is significant, and not just because Jolie’s openness is bringing normally taboo subjects—menopause, mastectomies—into the public sphere. There’s also the fact that Hollywood has, particularly in its notoriously troublesome dealings with women, emphasized a divide between beauty and health. Or, more specifically, between health and “health.” The media-industrial complex, with its emphasis on images and consumerism, has treated beauty not just as evidence of well-being, but also as something that can be obtained at the expense of it. It has sold us, and particularly women, on beautifying solutions like Botox (the injection of toxic botulism into one’s skin), tanning (UV radiation increasing one’s risk of developing malignant melanoma), and plastic surgery, with all its attendant dangers. It has emphasized, in other words, beauty—which doubles, often, as youth—over longevity….Jolie’s advocacy is especially powerful, though, because the issues she’s discussing—and the issues she is, more importantly, encouraging a discussion about—are intimately connected to cultural assumptions about youth and desirability. Jolie is oversharing, in a way, but it’s a productive form of oversharing—far removed from the vapidities of the Kardashian Selfie or the self-indulgences of Celebrity Instagram. Jolie, in talking about her surgery, is also emphasizing the inextricable connection between inner health and outer beauty. “I feel feminine,” Jolie writes in today’s essay. That declaration is preceded, tellingly, by this one: “I will look for natural ways to strengthen my immune system.”


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good-night angel: lisa bonchek adams rest in peace

Posted on March 7, 2015 by carla



This morning I sit I tears. Lisa Bonchek Adams has died. Heaven has gained a true angel and those of us who are mere mortals have lost an amazing woman who inspired us greatly to just do better and be better.

Lisa and I had quite a few friends in common as it turns out, only I was not aware of her until I joined the sometimes dreaded pink sisterhood of Breast Cancer survivors four years this coming  June 1st.

Lisa lived with metastatic breast cancer, and last evening she drifted away from her friends, family, and all of the people like me who so admired her as a woman, writer, inspiration , friend, mother, wife, daughter, human being….and so much more.

I wrote about her a little over a year ago when two “writers” (in quotes because what they did to this day I find unconscionable) decided to take Lisa to task for writing about her cancer journey. Yes I am speaking about the scribbling Kellers.

And for a husband and wife who wrote for different media outlets (him, Bill Keller formerly of The New York Times and her, Emma G. Keller formerly of The Guardian) to tag team this woman because of how she chooses to discuss or even deal with her cancer is just so off the charts wrong to me.

You see, it is not the fact that they had a differing opinion from Lisa Bonchek Adams on how she dealt with her cancer, it’s the fact that these two wrote for monster media conglomerates, are married, and oopsies and both wrote about this? Talk about pillow talk!  Mrs. Keller actually resigned from The Guardian a couple months after this occurred last January. Mr. Keller left The New York Times for something else around the same time his wife left her former paper. He is now the editor of the Marshall Project, but I digress. This is about Lisa, not how horrible two journalists verbally treated a women then living with stage 4 cancers. And I apologize for working them into my post, but what they did caused a fabulous human being pain the last year of her life.

Amy Wu of the Huffington Post wrote about Lisa just a few weeks ago and she said:

Illness can find a channel for expressing hope, meaning, inspiration and knowledge exchange through blogging as a communication form. When I attended a conference for young breast cancer survivors last fall in Philadelphia, it struck me that many of the women maintained a blog devoted to her journey or to the cause. I gave them a nickname — the pink bloggers…..Despite the fear, anxiety and pain related to the illness, the tons of the blogs are chatty and conversational tone as if the women were having a conversation with their best friend at a coffee shop. Mostly, and perhaps surprisingly the blogs are candid about the disease, and their names are front and center. These women’s journeys are very public, and I had yet to find a blog written under a pseudonym. Lisa Bonchek Adams blog) is entitled, “Writings on metastatic breast cancer, grief & loss, life, and family.” 

In a December post Adams, who has been battling breast cancer, updates her readers about her treatment (Adams has breast cancer, which metastisized to her brain), and involves another aggressive round of chemotherapy. The post goes into matter-of-fact detail about the details ad frequency of treatment, but also ends with a touch of humor. Adams ends her blog with, “I get foggy quickly so I hope this post made sense!” 
Humor is intertwined with sadness and fear too but in other forms of communication. An Oct. 24 post is a letter to her three young children. “No matter when, no matter how, I hope you will someday learn this powerful emotion I feel for you. You give me strength. You make me fight. You give me joy. You make my heart swell with pride.”

That was Lisa to a “T”. She was straightforward in her writing,  but kind and loving and showed great humor. And all in the face of the medical issues she faced. To women like me who have survived breast cancer or are somewhere in the journey of surgery and treatment, she was a hero to us.  She’s also just a remarkable woman who shared all her ups and downs and remained positive until the end.

To Lisa’s family, my heartfelt condolences. I am but a stranger to you, but through Lisa’s words I felt like I knew you all very well. Wishing you peace and love and all good things. After all, that’s what Lisa would have wanted… For all of us….sleep with the Angels, Lisa, the difficult part of your journey is over.

Here is what was on her website this morning:

Lisa Bonchek Adams: In Memorium March 6, 2015

The thousands upon thousands who knew and loved Lisa Bonchek Adams; whether in person or via Facebook, Twitter, or her website and blog read around the world; whether up close or from afar; will find it hard to believe that her steely will and indomitable spirit were finally overcome by the disease she had lived with for so many years.
Lisa died at home around 9:45 pm on Friday, March 06, 2015, surrounded by her entire family.
Lisa was cared for to the end by her beloved Dr. Chau Dang of Memorial Sloan Kettering Cancer Center. Lisa specifically asked that anyone who wishes to honor her memory do so with a contribution to her fund for breast cancer research at MSKCC.
The Adams and Bonchek families send a heartfelt thank you to all for your love and support. We know that Lisa will always be a part of your lives, as she will be a part of ours.
Services consistent with her wishes will be arranged and announced here.
In keeping with Lisa’s wishes, this web site will be maintained as a resource of Lisa’s writings about metastatic breast cancer, grief and loss, life, and family.
“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”

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nevada’s michele fiore thinks breast cancer is a fungus?

Posted on February 27, 2015 by carla

There is dumb, there is dumber, and then there is a just a jackass. The Nevada politician who thinks the solution for rape is for “hot little girls” to carry automatic weapons (her words, truly) is at it again spreading her pearls of “wisdom” .

I did not think any female politician could be dumber and more offensive than Chrisitine O’Donnell and Sarah Palin, but taaaa taaaa daaa (or Taa- d’oh) here she is: Michele Fiore District 4 Assembleywoman from Nevada. Originally from Brooklyn she is a tried and true NUT JOB.

Why? Why am I writing about her or politics at all on a breast cancer blog? Because this woman has announced that cancer, like breast cancer is a fungus….and oh yeah, we can cure it with saltwater or baking soda.

I kid you not. This woman is cuckoo for cocoa puffs, yet there she sits in public elected office.

If this is the future of American politics, we all should be terrified. I don’t know how people like this get elected to public office but I do know that my breast cancer wasn’t caused by a freaking fungus. People like this are not fit to serve, and by the way, in case any of her supporters are reading, I am a registered Republican. This woman is not a Republican she’s an aberration of I’m not sure quite what.

If you are a cancer or breast cancer survivor or someone undergoing treatment for cancer  reading this post and think what she has said is as horrible as I do you can find Michele Fiore on Facebook and on Twitter under the handle @votefiore. She has a website www.votefiore.com and via her Nevada legislator web page.

She deserves no less than to be inundated with comments for cancer survivor sand cancer patients everywhere. But because she is a total kook try your best to be polite.

We canNOT as Americans keep allowing people like this to be elected to public office. Period. It does NOT matter what political persuasion they are they are undermining the fabric the pins our country together politically and in other ways.

Apparently in addition to everything else we must look at when we are electing people to public office, we need to see what their stand is on cancer. And with her, pick a topic, she is no stranger to welcome to Bizarreville controversy. (There was that million dollar issue at the end of 2014.)

There are lobbyists in this country for everything, so are there Breast Cancer Lobbyists? #BoobPAC ? Ladies,  it’s time to #VoteWithYourBreasts and politicians like Michele Fiori should not be reelected. Or elected in the first place.

I apologize for the rant it’s just that when I saw this simply couldn’t stand it, or keep my mouth shut. We have to speak up every time one of these creatures surfaces. Otherwise, as we all know, we pay for it somehow when we’re trying to get treatment or trying to get treatment paid for.

Below are links and excerpts from two articles about this so you see:

Washington Post: To Your Health

A lawmaker who believes saltwater and baking soda can cure cancer

By Abby Ohlheiser February 26 at 1:17 PM  http://platform.twitter.com/widgets/follow_button.10495f50328f320357081ee891e346f2.en.html#_=1425040800567&dnt=false&id=twitter-widget-0&lang=en&screen_name=abbyohlheiser&show_count=false&show_screen_name=true&size=m

Nevada Assemblywoman Michele Fiore said recently that she will propose a “Right to Try” bill in her state. But it’s not the bill itself that gained national attention. Instead, it was Fiore’s statement that she believes cancer is “a fungus” that can be cured by “flushing, let’s say, saltwater, sodium carbonate” through the body.
Just to be clear, right up front: Cancer is not a fungus. It is the uncontrolled division of abnormal human cells within the body. Saltwater cannot cure cancer.

 

GOP lawmaker sees cancer as a ‘fungus’

By Steve Benen

…..the latest from Nevada Assemblywoman Michele Fiore (R), who has a proposal to change existing rules on end-of-life care.
Fiore, who operates a home health care business that sometimes passes payroll taxes onto the IRS, said she knew of friends who left the country to find end-of-life treatments that are not FDA-approved. And then the payoff:

“If you have cancer, which I believe is a fungus,” she began, citing a widely debunked theory that the American Cancer Society warns about, ”and we can put a pic line into your body and we’re flushing with, say, salt water, sodium cardonate [I think she means bicarbonate], through that line and flushing out the fungus. These are some procedures that are not FDA-approved in America that are very inexpensive, cost-effective.”
I see.

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politicizing cancer?

Posted on February 20, 2015 by carla

IMG_3485

One of my U.S. Senators is Pat Toomey. I am a Republican, but not a particular fan as he has always been a bit right of Attila the Hun. His views on what a woman can do with their bodies, terrifies me.

PFAW.org describes Senator Toomey thusly:

Toomey believes Roe v. Wade was wrongly decided, thinks abortion should be illegal and doctors who perform abortions should be jailed. In Congress he voted to prohibit Planned Parenthood from receiving federal funds even for non-abortion women’s health work.

So to suddenly receive junk political e-mails from the good Senator exhibiting a move to appear more user friendly and perhaps dare I say it centrist makes me wonder what’s up?

I would want to think, to hope this man’s motives were pure, but this thing captioned above as “Fighting Cancer” appears on the same email as other tug at heart strings topics like “Protecting Children” .

Methinks the good senator is starting to position himself for something.

So as a breast cancer survivor I think I can safely speak for other survivors when I say Senator Toomey, with all due respect, don’t you dare politicize cancer.

Toomey was also scored 25% by The American Public Health Association (APHA) on Health Issues.. I don’t know that he is wrong about everything having to do with the state of our healthcare in this country, but as a woman, even a Republican woman, this is not an elected official I have ever had faith or trust in since in the back of my head I have always felt he doesn’t necessarily respect women and their multi-faceted life roles in today’s world.

So Senator Toomey if you are truly talking about “fighting cancer” to support your wife and her mom, I am cool with that. BUT please don’t politicize cancer and use it to feather your political nest.

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breast cancer scam callers, 2015 edition

Posted on February 16, 2015 by carla

IMG_3470

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

2015/02/img_3358.jpg
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

2015/01/img_3217.jpg

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.

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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