#bullsh😡t , penn medicine

Let's recap: I have had three surgeries (breast cancer, full hysterectomy, knee surgery) and quite a few procedures over the past six years. I have also had radiation, a colonoscopy, an endoscopy, the flu, a sprained ankle, and so on and so forth. And ALL of the other doctors appointments that go with all of these things.

Twice surgeries or related to surgeries have conflicted with my Penn Medicine dermatology appointment. One time I completely forgot an appointment in the sea of medical appointments I have had the past few years. I felt awful. I had never done that before.

Most recently, this spring I had knee surgery. I could not drive for a couple of months BEFORE the surgery (driving leg was injured) , and could not drive for quite a while after surgery…and I am still doing rehab on my leg. After my surgery, but before I could drive, I had to cancel my at that point twice canceled dermatology appointment with Dr. Rudolf Roth, whom I really like and have worked well with.

When I canceled my dermatologist appointment, I actually spoke with someone in the dermatology office at Penn Medicine in Radnor. I explained that I literally could not drive and was so sorry to cancel an appointment. The woman on the phone said it was no problem, to just reschedule when I could. I asked at the time if it was a problem to reschedule in the summer, and was told that was fine.

I have this weird thing on my hand, and having had radiation treatment I am paranoid about my skin. So I went to mypennmedicine, the website Penn Medicine wants you to use…and let us not forget that their horrific phone system makes it almost impossible to speak to an actual human being most of the time. I went to my drop down menu to make an appointment and chose my dermatologist, Dr. Rudolf Roth, and completed the form to get an appointment.

I got a reply back that I did not see until about an hour ago:

What the hell???? This is Penn Medicine patient services? So I sent a reply back and yes I was damn snippy. I own it. But Geez Louise, why does someone tell me it's OK, just connect when I want to reschedule and this is the fine how-Dee-do? Are there zero patient notes as to WHY I missed the appointment that put me over the edge with the "patient services associate"????

So I went back to the menu of contact your doctors or whatever the hell they call it, and pull down my list of doctors, and guess what? They removed my dermatologist as one of my doctors.

Sorry not sorry but that is total bullshit. And I am calling bullshit on Penn Medicine. I have played by the rules, jumped through the veritable hoops of their layers of systems. And my goodness haven't I paid them enough co-pays over the years?

So yeah, I am venting via my blog. No one told me when I had to cancel my appointment earlier this year that I would no longer be a patient. I was told to reschedule.

This is crap. When Penn Medicine has gotten so big that patients aren't people, just bodies, it's a problem.

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cancer spam

I get dozens of spam comments a week.  I find cancer-related spam especially egregious. Today we have these people.  An organization no one has ever heard of, trying to use this blog to advertise their wares.

Here’s the 411: if this is how they try to get the word out, save your money, spamming is so totally bogus.

The nice spammer was kind enough to leave all her information.  Feel free to send HER spammy emails!

Posted in breast cancer, fake charity | Tagged , | 1 Comment

last radiation bill

All I have done for the last 6 years is pay off my breast cancer treatment bills from 2011.

Every month, without fail.

I did my radiation at Lankenau Hospital in suburban Philadelphia, PA.  I did my radiation there because at the time my own hospital system (Penn) did not have a suburban radiation spot, and I wanted Dr. Marisa Weiss (Breastcancer.org) to be my radiation oncologist.

As I said in 2014 when they tried to sell off my remaining radiation bill to a bill collector, in spite of the payment arrangements we had made after they screwed up the first time (2012), if I had to do it all over again, as much as I love Dr. Marisa Weiss I would have chosen to go elsewhere because of their sucky business practices when it comes to patient billing.

To recap the past:

When I began as a patient 6 years ago (2011)  I filled out reams of paperwork. Enough to have felled a small forest. And I kept asking for bills as week after week of radiation treatment went by. I was told not to worry I would get billed. Only I never got any bills. But I kept asking and they kept giving me the same answer.

More than a year later (of essentially asking for bills almost monthly) I find out because of my then postman that Lankenau/Main Line Health  were mailing invoices to my dead father’s FORMER address. A property my parents had not owned in YEARS AND YEARS at that point, and I might add an address I never provided to them EVER because I wasn’t a patient  before. I always use Penn Medicine.

My postman only saw the bill because he had been asked to cover that delivery route one random day.  I still remember when he knocked on my door the next day and handed me this bill with a nasty letter from Main Line Health – you know like it was my fault they chose an address that wasn’t mine and somehow were unable to return a phone call or call me at all over the bill?

So I called and I went through rigmarole and finally ended up on a payment plan. I was paying Lankenau monthly until April 25, 2014 when my invoices stopped coming.

I made two attempts by telephone to get my invoices straightened out at that point, but stopped because I was recovering from another surgery.

During my recovery from a more major surgery (full hysterectomy ) a bill collector contacted me. Main Line Health decided to sell my remaining bill off for collection even though I was paying monthly and had reached out to say “where are my monthly invoices?”

Since that point in 2014,  I have continued to pay my bill monthly.  And this morning, ironically, I had mailed my final payment, because the balance had gotten small enough (finally) to manage a pay off.

I was so psyched, until I got home…when I got home there was an impersonal dear occupant letter from Main Line Health billing that was unsigned and not personalized in any way (not even the date it was sent) demanding I fill out more paperwork. On the same bill I have been paying religiously for now so many freaking years.

They were getting ready to change the game again.   What if I had not saved up to pay off the balance?  I would have been back in the fray with Main Line Health billing again. Over the same god damned bill. If I had shirked my responsibilities, I would say they had a right.  But I didn’t shirk anything.

This is what gets to me about healthcare.  You pay and pay and pay and you are always at the mercy of either health insurance companies, stupid politicians whose benefits WE pay for as taxpayers, or inept hospital system billing offices. And trust me, none of those aforementioned parties give a rat’s fanny about the stress that causes patients and families.  Yet another reason why I say I would not wish cancer or cancer treatment on my worst enemy.

But today I finally freed myself from the shackles of Main Line Health debt. Breast cancer is so damn expensive.   God bless my doctors and nurses.  Can’t say I feel the same for the billing departments.

 

 

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

if goop = gwyneth paltrow does goop = b.s. ?

goop
ɡo͞op/
noun

NORTH AMERICAN informal
  1. sloppy or sticky semifluid matter, typically something unpleasant.
    • mawkish sentiment.

     

Gwyneth Paltrow.  Actress and self imagined health and lifestyle guru.  Have never been a fan as she just gives off the vibes in every interview I have seen of a self-absorbed narcissist.   Apple doesn’t fall far from the self-absorbed narcissist tree as her mother is actress Blythe Danner.

So Gwyneth has this Goop thing going on.  I posted the definition of “goop” above.  Perhaps oddly appropriate?

Anyway Goop is somewhat pretentious.  BS articles, and lots of overpriced crap no one needs to buy except Gwyneth says so. She even has a pop up market in the Hamptons (Amagansett).

Anyway, one of the things she like to opine on is how women REALLY get breast cancer, because she is an expert you know.  According Gwynnie, bras. (Do you feel my eyes rolling?)

Just for the record, this myth was debunked as far back as 2014 .

But no….Gwyneth knows all.

Here is where a very cool doctor took her on in 2015

Hey Gwyneth Paltrow, a GYN says stop scaring women about bras and breast cancer

Gwyneth Paltrow’s GOOP is the latest site to stoke false fears about bras and breast cancer (scaremongering being a nice touch for breast cancer awareness month – wraps up the whole October fright fest thing with a pink bow). The post is written by Dr. Habib Sadeghi, a doctor of osteopathic medicine and apparently the person who brought us the term conscious uncoupling….

There is no science to back up a bra and breast cancer connection, never mind that the mechanism is biologically implausible. The myth has been debunked so many times I have lost track, but if you want more data read Dr. David Gorski, a cancer surgeon (so someone who knows a lot more about breast cancer than Sadeghi, Singer, or Schacter). He has debunked the myth several times. There is also no data to suggest carrying your cell phone in your bra can cause cancer. By the way, Sadeghi doesn’t think you should even have WiFi in your house.

It’s so ludicrous that it should be funny, except some women will read this and be scared.

Ladies, wear your bra or don’t. Your choice. Heck, wear it to bed if it’s comfortable. It’s all good. If it’s digging in get a fitting from an expert, not because it could be building up toxins but because everyone should know the joy of a well-fitted bra.

 

This author wrote another post which had me in stitches – Dear Gwyneth Paltrow we’re not f**king with you we’re correcting you, XOXO Science

Read it.

I am not a fan of quackery.  I am not a fan of idiots who opine on a disease they have never had, nor know anything substantive about.  It is offensive.

So here’s my note to GP of GOOPedty GOOPpoop:

Dear Gwyneth Paltrow,

Hi.  Might I suggest you stick to selling overpriced whatever on your website and leave things like cancer to the actual educated experts?  I can assure you that bras and martians did not cause my breast cancer.

You are sooo extremely busy and important that I will just get right to it:  in a nutshell, reading your articles like the breast cancer caused by bras makes my head hurt.

Enjoy being a self-impressed narcissistic nutjob and stay out of my breast health. 

xoxo

A breast cancer survivor.

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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’s “Operation 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.

 

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

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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