#brave

Photo courtesy of Shannen Doherty Facebook and Instagram

Photo courtesy of Shannen Doherty Facebook and Instagram

Truly, no words are necessary. This is just #brave. I have been critical of celebrities fighting breast cancer, but Shannen Doherty gets nothing but #respect.  She is one of the only celebrities I have ever seen show the world what this whole bullshit of fighting cancer is about.  And for a woman going through treatment, I do not think she has ever been more beautiful.

Bravo, Shannen. I don’t know you, you don’t know me. I am one of your millions of new sister in the sisterhood we never asked to belong to. Your photos moved me to tears.

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catching the breast cancer “charity” scammers: an opportunity to level the playing field

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All good things come to those who wait.  Since almost the inception of this blog, I have written about BOGUS BREAST CANCER CHARITIES. I never knew they existed until I had breast cancer.  Then like magic they started calling. I still do not know who sold my information and that is something I still want to know: WHO SELLS THE NAMES AND TELEPHONE NUMBERS AND ADDRESSES OF CANCER PATIENTS FOR A LIVING?

At the bottom are some of the posts I have written, and the posts that STILL five years later generate comments almost weekly is anything written about the Breast Cancer Survivors Foundation.

Ah yes the Breast Cancer Survivors Foundation. Now they have a website. They even have a PayPal account . They now list their address as: 18851 NE 29th Avenue Suite 700
Aventura FL 33180   800-338-1740 E-mail: info@breastcancersurvivor.org (Feel free to send them lots of JUNK mail. Feel free to encourage people to call them about Prince Albert in a Can)

When you Google this bogus breast cancer charity, my initial post from 2011 is still the number two clicked on item.  I find that simply astounding. This in the next hyperlink is another post that is quite popular.

Oh so you want to know why I am posting again?

You know I have written about getting harassing calls on behalf of so-called breast cancer charities.  We have already covered that.  What you do NOT know is the government is truly trying to crack down on these types of operations.

Last year, the FTC and all 50 states joined in an action against four supposed cancer charities – including one called the Breast Cancer Society – that raised funds from telemarketing. The feds and states said that the charities spent 97% of the money they raised on either their private fundraisers or themselves (trips to Disney World and cruises, among other expenses).

Check it out here:

CNN: Government says four cancer charities are shams

Detroit Free Press: 2 bogus cancer charities to dissolve in FTC settlement

Asbury Park Press:  State: Bogus cancer charities scammed $6M from NJ

The government eventually shut down all four “charities.” The articles above are about what happened. There are tons of articles, I just chose these at random.

Anyway………..I’ve spoken to a charity regulator in New York in the New York Attorney General’s Charities Bureau, who told me that her office wants to hear from people who have received telemarketing calls from charities that seem suspect.

People!!!  This is HUGE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The regulator suggested that you or anyone you know receiving these calls writes down as much as you can about the call, especially the time and date of the call, the phone number the call comes from, and who the caller says they are affiliated with (do they say they are calling from a professional fundraiser, or do they claim to represent the organization), and then send that information to the New York Attorney General’s Charities Bureau, at charities.complaints@ag.ny.gov

And (super important) indicate in your e-mail whether you are willing to speak to someone at the AG’s office, and if so, provide your contact information. PLEASE, they don’t bite victims and the New York AG’s Charity Bureau has some fearsome teeth to take a bite out of this B.S. once and for all.  And if you have received these calls and/or donated YOU ARE A VICTIM, aren’t you? It’s not like you called them at dinner time and pushed them to take your hard earned money, right?

It would be so nice to put these people out of business who make money out of preying on people when they are vulnerable, wouldn’t it? This is an opportunity.  Again e-mail charities.complaints@ag.ny.gov

PLEASE….so many have been telling me stories about how these people took advantage for five years now.  Carpe diem!  Here is a chance to change the game.  Do Dr. Yulius Poplyansky and others deserve to get away with this any longer? I say NO.

Here are a couple of things I pulled off GuideStar to hopefully sway you even more into taking the time to contact the NYAG Charities Bureau at charities.complaints@ag.ny.gov

 

 

 

There are so many honest and terrific charities.  Let GuideStar help you make an educated decision. They list the form 990s and so on. They are a terrific resource. Google your charities. See if people are complaining about them, or if the media is reporting on them.

Below are prior posts on breast cancer “charities”  who believe that charity begins at home, i.e. you support them, not so much on the supporting actual women in need.

 

getting solicitation calls from breast cancer survivors foundation?

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the truth and fear of breast cancer

DSC_5411The blog posts written by breast cancer women are not all pretty. They are raw, emotional, and real. I am no different. For five years you have followed my ups, my downs, my life in my post-breast cancer reality.

I am, thus far, one of the very, very lucky ones. But I have my trigger points of emotion. I have a hard time now with funerals and will often go out of my way to avoid them and memorial services even if I should not and especially if they had breast cancer. For example, the two ladies I knew who died of metastatic breast cancer  in April and June Ann and Peggy? I couldn’t do it. Now Ann’s original service I missed as I just did not know the date at the time until it was past,  but then there was another, a second gathering. I just couldn’t go .  And Peggy’s? I also just couldn’t go. Maybe I should have. But I couldn’t, and I knew these women would have understood. It sounds childish, but I literally couldn’t bear it.

Another weird thing for me now is grave visiting.  My late father’s birthday was June 29th.  My mother sent me a photo of his grave.  It was either to prompt me to go, or to show she had been.  It did not matter.  It made me  angry and upset. I know where he is. I miss him every day. But visiting him and a couple of other friends who have pre-deceased me? I can’t do it.

At least right now. I remember them and miss them, but standing in a graveyard to visit them is too upsetting. Maybe it won’t be always, but it is what it is for right now.  Yet conversely, I can rally people to fight to save abandoned graveyards. But that is general history and not mine or people I had history with.

I also have a hard time sometimes with survivors I know who are not treated well by their partners. I have to fight to bite my tongue and not distance myself when they need kindness and support.  One person in particular comes to mind.  She is so lovely and utterly beaten up emotionally by her so called “better half”.  She relays these awful, selfish, and often plain cruel things he says to her.   She relays these things often in a childlike sense of hurt and wonderment that this person is doing this again. (Or so it sounds to my ears.)

This partner says to this woman things I would not stand for that make me want to scream out for him to stop and I do not even know him. Of course I learned the hard way before my sweet man that tolerating abusive behavior for the sake of love is a very bad idea. You can’t justify bad behavior forever.  It eats your soul.  I hope she realizes it before it’s too late.

When you face breast cancer the difference between a healthy and unhealthy relationship becomes glaring like a neon sign. If I had stayed with my ex and continue to make excuses for his bad behavior  years ago and his putting me down constantly his criticism and so on I don’t think I would’ve had as good a recovery from breast cancer. Luckily for me, God had other plans and he left and we split way before my diagnosis. I told this woman I know she  loves her partner, but she needs to love and value herself more at this point. I wrote on this blog about how breast cancer forces you to be selfish. I still mean it.

Sometimes I have a hard time reading the blogs of other breast cancer women. I can feel their despair when they are sad or upset like it is happening to me.  It’s a crazy kind of empathy scenario.

Today because of a friend posting it on her timeline I came across a post written the other day by a woman named Uzma who writes a blog called Left Boob Gone Rogue . The post made me shiver to my core. I so feel and so get what she is saying. She now has metastasis, the largest single nightmare of breast cancer gals after the fear of recurrence we all experience.

I don’t know her, yet I want to hug her. Yet part of me knows that she might not want that hug right now. I don’t know that I would. Her post made me cry. Here is an excerpt:

 

I am sorry I didn’t beat cancer July 3, 2016

 

This is but an excerpt of the post.  I hope she doesn’t mind me posting it but I respect her words. They are, raw, honest, and beautiful.

The words are also ones I hope and pray I never have to emulate some day. But who knows? We are all only cancer free until we aren’t.  Life is a gift. Every day is a gift.  On this journey we have good days and bad days.

Love your life. Live it. Do not be afraid to cry and do not be afraid to love with your whole heart.

God bless all of my breast cancer sister out there.

Thanks for stopping by.

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n.e.d. is my friend


Five years. It’s official. I am FIVE years cancer free. N.E.D. or No Evidence of Disease.

Yay!!!!!!!!!

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five years 

 Five years ago right now I was a haze of leftover anesthesia and pain meds. Today is June 1st and five years ago now I had a partial mastectomy or lumpectomy.

Next week I start my five year tests. Mammogram, visit to oncology breast surgeon, and oncology visit. I am scared.

Funny thing is the only person who remembered today was my friend Barb from high school who lives in Virginia. I didn’t want fanfare, so it’s fine, truly.

But today I also lost another friend to cancer. And I do not know what it is about being a survivor, but you feel each loss of another survivor so very much more acutely,

It was April 13 when my friend Peggy  messaged me to tell me her latest testing showed Her cancer was back and she had cancer in her liver and 3 lesions in her cerebellum. She also told me she was going to Marisa Weiss at Lankenau (who is also my radiation oncologist.)

We messaged back and forth until about a month ago. She had also told me about her job at QVC going to Poland and wondered what she would do after 28 years. She would even describe the early morning sky on the way to Lankenau.

The last time we connected was April 25th when I saw my first bluebird ever in my garden. Peggy always took these amazing nature shots. She was a truly gifted photographer. She also loved her garden and her cats.

So I hit 5 years today and Peggy died today. So soon on the heels of another new friend dying, Ann.

I have to admit it’s really hard. Today is 5 years to the day since my surgery. I’m still here and grateful to God like no one truly understands, but so sad I have lost two friends to cancer in 2016.

Why do some of us live and others die? Don’t just tell me the cycle of life, even if in my heart I know that is the answer. Today it’s so bittersweet out.

Remember Peggy and Ann in your prayers. They were both lovely women.
And thank you for all of your support over the past five years.

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oh shut up, the cranky me chronicles

 I belong to one breast cancer group. Sometimes I can’t visit it online because there are posts that upset me. These are the posts of the people who just arbitrarily without a doctor’s approval or disapproval.

Then there are the posts of people who see cancer as some sort of a warped competition, as in their cancer is more important, more difficult, and bizarrely better than your cancer.

Yes it always garners a big WTF from me. This morning it pissed me off.

There was a discussion on Tamoxifen based on some new research that runs contrary to the five year and ten year schedules of taking the drug. So naturally there are discussions from women like myself who are on it. some have side effects, others do not. Then we have women who haven’t started it who are terrified, terrifed of something they have NOT yet taken.

Ok all of you who are “too afraid” of the side effects of tamoxifen seriously? You are a long time dead. Yes after five years (headed to 10) there are side effects of joint pain, sometimes feeling blah tired and depressed or moody and weight gain for me. I hate that, I hate looking at myself in the mirror but if it means I so drastically REDUCE the chance of recurrence, and well ladies, I suck it up.  I am afraid of dying more at the end of the day.

I am terrified of recurrence and… well… all freaking drugs have side effects. And Tamoxifen as per my doctors for me has the potential for fewer than aromatase inhibitors. I love my breast cancer group but sometimes I stay away because of posts like this.

I went to visit this morning because my five year post breast cancer mammogram is coming up soon, and well, I am not just apprehensive, I am truthfully scared. I have never ever at any time even since diagnosis and treatment been truly scared. It’s not rational, yet it just is.

 

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Cancer isn’t a competition for Christ’s sake. And sometime from other survivors you get this sense of unworthiness, like each of us with our individual cancers have not suffered enough for them to find our feelings credible.

STFU already.

Jesus. Way to go ladies, just invalidate how everyone else feels why don’t you?

You know what? That’s on these women. I can’t help their anger like my drug side effects are less worthy than theirs  all because my cancer has the dumb luck of MAYBE having a lesser recurrence rate than theirs. THAT is offensive to ME. And I do not roll up in my breast cancer group very often mentioning my side effects.

Do breast cancer drugs affect quality of life?

Yes they do.

And these women really should shut their mouths about what kind of surgeries people have had. Every surgery is different, every cancer is different.

So with all due respect, they might want to think about what THEY say with all their discussion of “respect”. I guess in their eyes  since I only had a lumpectomy or partial mastectomy I am not as much of a woman as others who had more flesh taken?

The reality of this is women who spout nonsense like this at other survivors aren’t really interested in what others have to say. They only want to be heard.  In my opinion that is as lopsided as my breasts are now. Usually I tune them out. Today I write about them.

I apologize for being so cranky but I recently pulled muscles in my back and shoulder and pain is still radiating down my butt. I have literally been in bed most of the week. Still in bed today and spent most of yesterday even in bed.

But even worse I had a bit of a scare on Tuesday. I felt like someone was sitting on my chest or diaphragm. So I went to a hospital run urgent care (makes a big difference) and they took me right in and two EKGs later- acid reflux disease and a potassium deficiency.

So now I have to take this protonix stuff for six weeks. After I had radiation my stomach started to get acid-y. Almost five years ago I started rads.

Anyway this all sent my BP thru the roof because well I admit it I am scared of the five year post breast cancer mammogram. It is on June 6th.

Sorry to be Debbie Downer stuff is just tugging at me. I hate feeling useless. Sitting still is hard. And still I am just so darn tired.

But I will get past this. Mostly just needed to vent. And I need to get the five year post diagnosis mammogram behind me. It’s got that same looming feeling final exams used to have at times.

Thanks for stopping by.

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five years

13102879_1186364034709879_1882917752094807097_nTomorrow is a very emotionally loaded day for me. And it’s not because my high school reunion weekend is starting again , it’s because it was five years ago tomorrow I received my breast cancer diagnosis from Dr. Dahlia Sataloff calling me from a conference somewhere in Colorado (I think that is where it was) because she didn’t want some random person to tell me.

Shortly after that I received a care package from Charleston, South Carolina. It was from my  lifelong friend Karen.

Well oops she did it again and I’m crying again because she has been such a loyal friend to me for so many decades at this point. Even though her birthday is first the week before mine, she sent me a birthday box now.

She always knows. And she always buys people things that are meaningful to them. She is incredibly thoughtful. And intuitive. 

I have been a bundle of emotions as this anniversary arrives. I just can’t help it.  So much has happened in five years.

Yes, I have been surgically altered and treated for breast cancer and will live on Tamoxifen for up to 10 years. Thus far no recurrences  thank God, but my life has changed so much in five years. Wonderful, positive, amazing changes… and I still think a lot of all that would not have happened if I did NOT get diagnosed with breast cancer.

I remember vividly the day I received the news.   I remember that room spinning, semi-stunned moment.  I also remember how people were when I started to divulge the news. Maybe I shouldn’t have told people at my reunion, but it was like the words came tumbling out. I had decided I needed to be open about what was happening to me, and that was when I also started this blog.

But what I have learned over five years is a lot of people can’t handle discussing cancer. Or they can’t stand hearing it discussed. Or they think you are weird for discussing it. hell, sometimes I feel weird being able to discuss it.  Or sometimes I can’t handle discussing it at all.  It became my new reality five years ago, and not by choice.

In the span of five years I have lost friends new and old to breast cancer as well as other cancers.  I have friends fighting breast cancer and nasty forms of leukemia now. And here I am. One of the lucky ones. I am blessed, I feel blessed.

I remember five years ago friends from high school at the reunion asking other friends if I was OK because I was open about having received a breast cancer diagnosis. I remember how I felt and my replies to them only I heard because I kept it to myself and just smiled every single time someone said something like that.

What did I say to those people at the time? Nothing much.

This however, is what I was thinking:

Am I OK? F*ck no. I just got diagnosed with breast cancer. Part of me is terrified but I know I will fight. I know I want to remain positive no matter what happens, but haven’t quite figured out how to do that yet. What I do know is sorry for the inconvenience but the only thing I do know right now is I have to talk about it. I need to talk about it. 

And outwardly I smiled, I chatted, I drank wine with my classmates from high school and I took photos.

I was at that moment terrified. I never really acknowledged that emotion until much, much later because I was afraid it would slow me down and hold me back.

And guess what? At five years a bit of the fear is back. I am fighting it. But I can feel it and I have to acknowledge these feelings.  I am not having my mammogram I am due until my reunion weekend is over. So next week I make my appointment and face my fears head on. Again.

Thank you for being on this journey with me.

Five years. Wow.

 

Sweet dreams are made of this
Who am I to disagree?
I travel the world
And the seven seas,
Everybody’s looking for something.

Some of them want to use you
Some of them want to get used by you
Some of them want to abuse you
Some of them want to be abused.

Sweet dreams are made of this
Who am I to disagree?
I travel the world
And the seven seas
Everybody’s looking for something

Hold your head up
Keep your head up, movin’ on
Hold your head up, movin’ on
Keep your head up, movin’ on
Hold your head up
Keep your head up, movin’ on
Hold your head up, movin’ on
Keep your head up, movin’ on

~Eurythmics “Sweet Dreams

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