the waiting is the hardest part

Here I sit waiting for my oncologist. Six years have passed and the waiting is still the hardest part. This is the first post I have ever done from the oncologist’s office.

I hear the footsteps to and fro outside the exam room, waiting. It’s hard. Everything leading up to this is hard.

Breast cancer made me face my own mortality six years ago.  I did not appreciate that. But I do appreciate the good that has come out of my life on this second chapter.

I have lost other friends to other cancers as well as breast cancer since I began this journey. I have friends who live with stage 4 metastatic breast cancer– they are my heroes.

I would never wish cancer treatment on anyone…ever.

I still say breast cancer in a sense freed me. Post breast cancer I have the life I always wanted, and the one thing about truly being a survivor is you will fight to keep your life.

I have been blessed, and yes it sometimes is a bumpy road and a lot of waiting is involved.  Patience is still not my finest quality, but six years post breast cancer I am a hell of a lot more humble as breast cancer has a habit of stripping away a lot of the minutiae in life that is really not so important.

My oncologist just came in. And then a nurse called him away. I don’t mind. There is another patient with a more immediate need. That is the nature of this bitch of a disease. Back later.

Ok so I  just came out. My sweet man tells me a young cancer patient went into convulsions in the waiting room and had to be rushed to the hospital. But for the grace of God go all of us. 

So it’s official. I made it six more months to officially six years with NED as my friend.

No Evidence of Disease.

Dear God, I am so grateful.

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a very pink victory: say buh byes to “breast cancer survivors foundation”

This is a really big deal.  There are far too many scam charities out there in this world.

This video and a link to the official press release came with a note from an Assistant New York Attorney General:

I thought you’d be interested in this…..And thank you for assisting us in the investigation.

As you all know because I wrote about it a few times, I was one of the people who had been contacted by this non-profit (and one of thousands who complained about phone calls from bogus breast cancer charities) and was one of the every day people who cooperated with the efforts of the New York State Attorney General’s Bureau of Charities investigation.

Every single day someone gets a call from an obnoxious pushy cold caller. This is yet another reason to not take their calls.  Legitimate charities are not going to pay oodles of money each year to cold calling companies to press innocent people on making donations to an organization they have never heard of.

I started getting calls about this fake breast cancer charity Breast Cancer Survivors Foundation within days of my partial mastectomy six years ago.  When they called, they already knew I was a “survivor”.  To this day, I do not know how they got my name or information. I often wondered where – drug companies, insurance companies, how? I never got a call UNTIL I had my operation.

Anyway, I think this is pretty cool.  Even in today’s world sometimes the white hats actually prevail. Here is the entire press release from the New York State Attorney General which just came out today June 16, 2017:

A.G. Schneiderman Announces $350,000 Settlement With Sham Breast Cancer Charity

“Breast Cancer Survivors Foundation” Fundraisers Pocketed 92 Cents Of Every Dollar Donated For Themselves – While Misleading Donors With Fictional Medical Services For Breast Cancer Patients

AG’sOperation Bottomfeeder” Targets Shell Charities That Exploit Popular Causes To Line Professional Fundraisers’ Pockets

Settlement Shuts Down Charity; $350,000 Will Be Directed To Legitimate Breast Cancer Organizations

NEW YORK – Attorney General Eric T. Schneiderman today announced a settlement with the Breast Cancer Survivors Foundation, Inc., (“BCSF”), and its President and Founder Dr. Yulius Poplyansky. For years, BCSF and its fundraisers painted the picture of an organization that was providing medical services to breast cancer patients and those at risk of breast cancer. Instead, as the Attorney General’s investigation found, BCSF was a shell charity created and run by its primary outside fundraiser, Mark Gelvan, in order to line the pockets of Gelvan, his companies, and his business associates – who pocketed 92 cents of every dollar donated to BCSF.

As part of the settlement, BCSF will shut down its operations nationwide and pay nearly $350,000, which will be directed to legitimate breast cancer organizations.

“There are few things more galling than pretending to help cancer patients, when you’re really just lining your own pockets. But that’s exactly what those behind the Breast Cancer Survivors Foundation did – siphoning millions in profits for themselves and sending less than four cents of every dollar raised to medical clinics,” said Attorney General Schneiderman. “As our Operation Bottomfeeder has shown, too often these shell charities exploit popular causes to enrich professional fundraisers. I’m committed to using the full power of my office to stop those who take advantage of people’s generosity to make a quick buck.”

Click here to view video of the Attorney General discussing this settlement.

Today’s settlement is part of the Attorney General’s Charities Bureau’s “Operation Bottomfeeder,” which targets a pervasive business model of shell charities that exploit popular causes, the professional fundraisers who take the lion’s share of donations and make misrepresentations, and other entities that facilitate the abuses. In August 2016, the Charities Bureau shut down the American Foundation for Disabled Children (AFDC), a shell charity that claimed to provide “resources to schools, shelters and other agencies providing long and short term care to special children,” but in fact served mainly as a source of money for its fundraisers. In November 2016, the Attorney General announced a settlement with the National Vietnam Veteran’s Foundation and its founder and president, John T. Burch, which also resulted in that charity’s shuttering, the payment of damages, and the issuance by Burch of a public apology. Also as a result of the Attorney General’s exposure of Burch’s actions at the charity, Burch was recently indicted by the Department of Justice for wire fraud. 

BCSF was founded in 2010 and began soliciting in New York shortly thereafter. By 2014, BCSF was raising on average $3 million a year nationwide from its telemarketing and direct mail campaigns. 

The Attorney General’s investigation found that Dr. Poplyansky started BCSF at the encouragement of Mark Gelvan, a professional fundraiser and longtime family friend whose relationship with Poplyansky’s family dated back to the 1970s.  Dr. Poplyansky had no training or experience in managing or leading any type of charitable enterprise. He and the other board members of BCSF allowed Mark Gelvan to run BCSF and turn it into a cash cow for Gelvan and his businesses.  Mark Gelvan has been barred from the professional fundraising industry in New York since 2004, following litigation brought by the Attorney General. 

As set forth in the findings in the settlement document, which Dr. Poplyansky admits are true, Mr. Gelvan suggested that Dr. Poplyansky start a breast cancer charity because it is a proven charitable moneymaker. Mr. Gelvan even provided Dr. Poplyansky with seed money to start the charity. Mr. Gelvan then used BCSF to fuel his own economic interests by ensuring that his fundraising companies and business associates were hired to provide services for BCSF. 

Mr. Gelvan also controlled BCSF’s operations by inserting himself into nearly every aspect of the charity’s operations, despite having no official role in the charity.  Gelvan oversaw financial reporting, attended board meetings and prepared board minutes, responded to media inquiries, and even organized and prepared the response to the Attorney General’s investigative subpoenas. Mr. Gelvan went so far as to tell BCSF’s outside accountants that Dr. Poplyansky “speaks very little English”- a completely false statement – so they would deal directly with him.

The investigation also found that Mr. Gelvan was instrumental in developing and authorizing BCFS’s charitable solicitations, which contained false and misleading statements about BCSF’s program activities.  These solicitations contained fictional accounts of doctor and patient interactions, descriptions of non-existent forums for breast cancer survivors, and international pharmaceutical programs – and left the donor with the distinct impression that BCSF was a medical facility providing medical services. In reality, BCSF had no medical staff, performed no medical services, had no real office, and provided no direct value to breast cancer patients or those at risk of developing breast cancer.  BCSF made only a few modest grants to clinics; those grants were, on average, only 3.5% of the funds it raised in the last four years that BCSF reported to the Attorney General.  

Dr. Poplyansky was not compensated for his role at BCSF.  Nonetheless, he had legal responsibilities to BCSF, which he repeatedly failed to honor.  Dr. Poplyansky has admitted to his wrongdoing and will cooperate with the Attorney General’s ongoing investigations into BCSF’s fundraisers and associated legal and accounting professionals.  BCSF and Dr. Poplyansky have also agreed to dissolve BCSF under the Attorney General’ s direction so that the charity can no longer be used as a shell company to direct monies to its fundraisers. Dr. Poplyansky will also be subject to a permanent nationwide bar on access to charitable assets or decision-making. On behalf of BCFS and himself, Dr. Poplyansky issued an apology to the donors of the Foundation and to the individuals and families that have been impacted by breast cancer. 

BCSF and Dr. Poplyansky also admitted that BCSF had made false filings with the Charities Bureau, including failing to disclose the identity of the fundraisers that operated on its behalf in New York, and all fees associated with its fundraising activities.

The full text of the admissions of BCSF and Dr. Poplyansky, and Dr. Poplyansky’s apology, are available here

This investigation into BCSF highlights the importance of the Attorney General’s Charities Bureau’s annual Pennies for Charities report, which reveals that charitable donations obtained by many professional fundraisers are largely spent on fundraising and administrative expenses, with only a small fraction left for charitable work. The latest Pennies for Charities report may be accessed here

The AG’s Tips for Charitable Giving are available here.

This case was handled by Assistant Attorney General Elizabeth Ann Fitzwater and Enforcement Section Co-Chief Yael Fuchs, with the support of Assistant Attorney General Peggy Farber, as well as Charities Bureau Associate Accountant Cintia Brown-Felder, Legal Assistant Carolyn Fleishman, and Attorney General Investigator Ismael Hernandez. Along with Ms. Fuchs, Emily Stern is Co-Chief of the Charities Bureau Enforcement Section. James Sheehan is the Charities Bureau Chief.  Alvin Bragg is Executive Deputy Attorney General for Social Justice. 

More information about the Attorney General’s Charities Bureau and organizations regulated by the Bureau may be found at www.charitiesnys.com.

 

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six years.

Six years.

I feel like I have lived an entire other life since the cancer was cut out…six years ago today.

I have avoided writing this post all day.  And now as I sit in the quiet of the place I call home listening to Shawn Colvin,

In tears.

Quietly.

By myself.

Like I have done every June 1st since the first June 1st.

Six years ago today at this time I was still pretty much out of it. I was a haze of pain meds and anesthesia.  My one thought was that the tumor was out and I wanted clear margins.

Breast cancer was the monkey wrench threw in my life six years ago. It has kept life interesting, when it hasn’t scared the crap out of me.

When I was diagnosed, I had just fallen deeply and truly in love for the first time in my adult life.  I thought God had a hell of a nerve when I was diagnosed.  Here I was finally emerging on the other side of a very bad relationship into the one I was destined for that had me feeling something new: hopeful.

Wham! Like I got the breath knocked out of me was how the news felt.  I can still remember the way I felt sitting in my office that day when Dr. Sataloff called to tell me late one April afternoon from a conference all the way across the country that my tumor was a tumor and it was malignant.

From that day in April I felt I was on this crazy race against time. Like playing beat the clock meets Russian Roulette. Then on June 1st….I exhaled.

Life has taken me on many journeys including emotional since my breast cancer diagnosis, treatment, and surgery.  I have said it many times before but I will say it again, the weird thing about breast cancer is it actually gave me myself back.

It’s not all unicorns and rainbows, though.  Every once in a while usually in the deep darkness of night my fears of recurrence are the worst type of night terrors ever imagined. And I can tell you I have a hard time attending funerals, especially if someone dies of breast cancer.  A lot of the time, I just can’t do it.

I also can’t spend a lot of time in my breast cancer group.  It sounds selfish but sometimes I just can’t do it.  Especially when I hear what some survivors are put through by their families and loved ones.

But then the clouds lift and I am back.  I am very grateful to be alive.

While I was writing I heard a Shawn Colvin song I never heard before (and it is not new) . I will leave you with it – it’s beautiful.

 

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dear pat toomey, bob casey and entire US senate….

As your constituent and as an American I’m asking you to protect all Americans by opposing the American Health Care Act.

This harmful bill gives billions to special interests while dramatically increasing costs for older Americans. This bill includes an “age tax” that would allow insurance companies to charge older Americans five times more — or even higher — for their health coverage than everyone else. On top of that, it reduces tax credits.

Together, these changes could cost older people up to $13,000 more a year. It also weakens Medicare, and could cost people with pre-existing conditions like cancer, diabetes, and heart disease more than $25,000 a year in premiums. 

It simply isn’t fair for older (or any) Americans to see their costs skyrocket, while insurance and drug companies get even richer. I expect my legislators to represent my interests — not those of special interests — and oppose the AHCA.

I am a breast cancer survivor. I have been self-pay on my insurance for years because of loopholes that already exist for smaller businesses – even though my former employer years ago kept himself covered he didn’t keep any of us covered. But even before the affordable care act I always kept myself covered with benefits. However in 2011 I developed breast cancer. So if you go forward with this act, I will not have coverage. You literally might be dooming me to death.

You all cannot stand idly by and allow this country to continue to disintegrate. You should not want to stand idly by and watch your constituents face the possibility of death because they can’t get health coverage due to pre-existing conditions. 

 Is the affordable care act perfect? No because one of the flaws in the system that neither political party ever wishes to address is the actual reformation of the insurance companies themselves. That’s where a huge problem lies. 

 Completely removing the affordable care act and the protections that millions of us wanted for decades to be able to have is not right. 
Allowing certain factions of politics to govern the entire country is not right. We aren’t monopoly pieces on the game board. We are human beings. Human beings that will be paying for your health care and everything you want through our taxes while you remove our ability to have coverage. I don’t mean to be rude, but I’m not a slave and I never signed up to live on a political plantation. 

Say no to Trump Care. I don’t care what political party you are, do the right thing – for once.

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love

Yesterday I had knee surgery.

It was arthroscopic surgery to repair a very torn meniscus.  In the last couple of days of February / first couple of days of March, I bent over from the waist to pick up like a sock I think it was off the floor and I heard a loud pop – or maybe it wasn’t audible to anyone like me but I swear anyone standing next to me could’ve heard it.

Given the state of health care today it literally took two months for me to get through everything to get approved for surgery.

And as I was in knee surgery yesterday, Congress totally screwed breast cancer survivors as we are still breast cancer patients….with pre-existing conditions.  Yet every day Americans like you and I will continue to pay for the gold plated health benefits of politicians.

But that is a post for another day. Today’s post is about love.

Six years ago as of April 28, I was planning  for breast cancer surgery and treatment. It seemed like fate had played a cruel joke on me – here I had fallen in love with the most wonderful man who loved me for me and the early days of that love were being tested by breast cancer.

My sweet man is not a flashy kind of love guy. In other words it’s not for show, it’s a quiet enduring love that still leaves me breathless.  To have someone who genuinely loves you and you feel the exact same way in return is the most amazing gift you can ever be given.

I went from being someone who barely took an aspirin or allergy pill to feeling like a pharmacology cocktail with radiation and Tamoxifen and all that stuff.  I have gone from breast cancer to a full hysterectomy to knee surgery yesterday. But through it all I have someone who loves and believes in me. and that’s what I woke up thinking about this morning.

I am so lucky.

I don’t know if I am articulating any of this sufficiently because right now I am feeling the nauseous after effects of anesthesia and the cup of coffee I should not have had today but the Italian in me was going to scream if I didn’t have caffeine. I also am having some serious pain management issues right now from my newly operated on knee.

So here I sit in bed with a big old ice pack on a propped up knee.  And I am a crappy patient. I have a really hard time letting anyone do anything for me, and my sweet man in his quiet solid way just takes care of me.

It took a long time to find this kind of love, and until it happened I wondered if it ever really existed. Now I know it does and it is such a powerful, wonderful thing.

I love you my sweet man. Thank you for loving me.

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anniversaries and the way things happen

Tomorrow is the sixth anniversary of my diagnosis of invasive lobular breast cancer. Knock on wood I’m still cancer free. And I’ve said it before, but a long strange trip it has indeed been.  Truly.

I still remember exactly what I was doing when the phone rang and I got my diagnosis.  It’s just one of those things I will probably always remember.

Yesterday I was at the hospital doing all the pre-op for my knee surgery and I got all turned around trying to find where I was supposed to go and the floors were brutal on my knee waiting for surgery. It wasn’t so much fun.

I looked for help and met one of the hospital’s Red Coat Ambassadors and she offered to walk me to where I needed to be. We were talking and I asked how she came to be one of their “ambassadors”.  So she told me.

 Another breast cancer survivor.  We always find each other.  And she has also had survived one other cancer, uterine I believe.

I have said since I began this journey it’s like this radar out there how all of us find each other. It’s like we sense each other.

She was such a remarkable woman and so very positive. She was literally exactly what the doctor ordered for me yesterday. I have been in a bit of a bad place in my head because of the knee pain like a big baby.  In my own defense because I have a high threshold for pain, the pain must be pretty bad if I can actually feel it.

But anyway, I think things that happen like that always happen for a reason. So I thanked that gracious lady for being in the right place at the right time.  She was also a reminder of the shore goodness of human beings that still exists in this crazy world in which we live.

Once I get through my knee surgery it will be time to start the annual breast cancer patient roulette of mammograms and doctors appointments.

 But for the grace of God go I.  I am alive and I love my life and I am really grateful.

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another spin on pink sisterhood

 

My anniversaries approach. My cancerversaries as it were.  I do not want to jinx myself.    I just want to meet my goal or remaining cancer free.

It has been a long strange trip indeed, with a lot of positive outcomes stemming from a breast cancer diagnosis.

The past few weeks I have been sidelined with a knee injury.  Off to the orthopedic surgeon tomorrow to get official results of MRI, deal with whatever they decide,  and then starts the Merry-Go-Round of annual breast cancer related visits and testing.

I was a Gamma Phi Beta in college.   I have been realizing of late all the Gamma Phis who have gone through breast and other cancers. Members of my sisterhood, an International Sorority founded on November 11, 1874.

It kind of blows my mind.  My sisterhood also has members who belong to my other sisterhood…the one I did not wish to belong to but belong to.

So this post today is dedicated to all the Gamma Phis out there who are either in treatment currently, or are survivors.

Call it a double sisterhood shout out.

 

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