a big bowl of wrong with a sleazy cherry on top

imrsOne of the things I dislike is when individuals try to profit from another person’s uncertainty and fear.  I also intensely dislike when non-oncology, non-medical professionals try to tell you how to cure breast cancer, especially when their “experience” is selling direct marketing supplements like Juice Plus.

Take for example yesterday, the woman whose degree was not in heath, nutrition, or medicine, but studied metalsmithing and in addition to “healthy” JuicePlus  well she makes fancy (and sugary) cakes.   She popped up on a message board where a woman younger than myself put it out there she was just confirmed as being a carrier of the BRCA gene and essentially how her head was swimming.

Some people offered suggestions to groups and websites she could join for information, friendship, and solidarity for lack of a better description.  However, then there were the others who popped up who not only  were never treated for cancer but had no reasonable backgrounds in medicine, oncology, or were trained specifically as a nutritionist for cancer patients .

I am sorry yet not sorry I find those people offensive.  I remember them all too well.

First I had the man who told me to skip all treatment and take these little iodine pills he was selling.   Then there was the woman who two days before my surgery told me I should cancel having the tumor excised and skip all traditional medicine and try her concoction of herbs mixed with broccoli and kale smoothies or something like that.

I found these people stunning in their ignorance.  And they never take the first “no” you give them as no. Such was the case of this Juice Plus diva.

1742927b05c610dded0e31c48a6d5863She private messages me about the Juice Plus  because I found her trying to sell this other woman offensive and essentially she then tries to sell me.  Even though I said to her truthfully there is NO as in ZERO proof that Juice Plus cures cancer. And how I was not a fan or believer of direct marketing businesses because if the products were all so fabulous, they would be readily available everywhere without ordering and not sold solely through home shows and housewives.

Then this woman says to me:

The founder of beatcancer.org Susan Silberstein does highly recommend juice plus. Also, it is not a supplement

I will get to BeatCancer.org  which is NOT the same as BreastCancer.org next, but wow she doesn’t even know that BeatCancer chick is NOT a medical doctor, or an oncologist but her doctor comes from the fact she was a psychologist.   The other guy, now CEO had a background in personal training and such and then there is one other woman who is a Naturopath.  Again, no actual cancer related medical professionals.

Anyway, getting frustrated with this woman I tell her I am not interested (again), not a fan of direct marketing, and (again) Juice Plus does not cure cancer. And that people who have not had cancer nor experience treating it should be trying to sell people supplements. Oh and then I said I think we are done here.

Well she wasn’t , this Mrs. Know It All, and she says:

Well maybe if you were not so angry you would find out that there are things out in the world that helps. Not everything is out to get you.

Did I mention I have never met nor conversed with this woman? That she initiated contact through no request of mine? I replied to her that quite specifically people like her who use any inappropriate excuse possible to sell someone something,make me angry.

She replies:

I truly believe it can help. It is a product with 38 clinical research studies. What crap??

Oy vey, reallly Stepford Wife Direct Marketer, so these studies come from the University of The Internet I guess?

She continues (amusingly):

Pyramid schemes are illegal and this company has been around for over 40 years. Direct marketing is a very legal business, maybe you are out of the loop but many many people earn money very legally this way.  I am curious what you know about the product?

 

(At this point I am waiting for her to whip out the Slipada and Stella & Dot summer sale items. Maybe interest me in some Isogenix.)

She then proceeds to tell how I have a problem,  she was giving “honest advice” and not trying to sell anyone anything and how I do not know what I am talking about.   Truthfully at this point I was unforgivably rude just so she would go away….she kept talking. So I blocked her which is very efficient pest control.

Then on the message board another seller of Juice Plus pops up but says her “friend” sells it, only look at her profiles and she apparently is her very own “friend” because she sells it.  Then she says how she knows a breast cancer patient who “swears by it”  and how it is certified to do so and so on.

Then someone rolls up about The Center for Advancement in Cancer Education otherwise known as BeatCancer.org.

Let’s start with Juice Plus and break it down.  It is a whole food based SUPPLEMENT.  It is not a replacement for whole foods or medicine. It is NOT proven to cure cancer.

Proper oncology based nutritionists  are nutritionists trained for cancer  and are quite specific in their discipline.  I know because I got one when I picked my surgeon, oncologist, etc.  They were VERY specific – they explained why they wanted me off oral supplements and vitamins through the end of treatment.

Yes and they want you getting whole food sources BUT they want it naturally occurring as in the food you are eating.

I had pages and pages of stuff to eat, what was a super food , what to avoid.  They wanted patients on foods that gave us naturally occurring what we needed NOT thru an engineered supplement.

Don’t believe me? How about what Memorial Sloan Kettering says?

MSK

Or what the University of Pennsylvania says in OncoLink:

juice plus scam

So yeah, I don’t know about you, but the people who have given me five years cancer free mmm might be the one I would listen to.  If not, there is this terrific article on a website called  MLM Watch, The Skeptical Guide to Multilevel Marketing:

Juice Plus: A Critical Look

Stephen Barrett, M.D.

National Safety Associates (NSA) president Jay Martin likes to turn simple ideas into megamillion-dollar sales. An NSA brochure states by 1997, his company had generated over $3 billion in sales by “developing and introducing innovative new products that are on the leading edge of whole new industries”: home fire detectors in the 1970s, water filters in the early 1980s, and air filters in the late 1980s. But its “biggest hit yet,” is a line of “natural food-based products designed to help prevent disease.” [1] Its flagship product —Juice Plus+®—was introduced in 1993 and reportedly hit $6 million per month by the end of its first year [2].

The Juice Plus+ recipe for success is very simple: Fruits and vegetables are good for us. Capture their goodness in convenient products. Add endorsements, testimonials, a pinch of fear, a scientific veneer, and several dollops of deception. And harness the power of multilevel marketing (MLM) to spread the word. All of these ingredients have been around for many years. But NSA has developed a winning mix.

It is well established that dietary strategies can help prevent certain cancers and reduce the risk of cardiovascular disease. Popularization of the diet-cancer link began during the early 1980s…MLM is a form of direct sales in which independent distributors can make money not only from their own sales but also from those of the people they recruit. Its roots date back to the 1930s when a California businessman began offering friends a commission for selling a food supplement to their friends. The operation evolved into Nutrilite Products in 1939 and began significant interstate distribution in 1945. In 1959, two highly successful distributors formed a new company that evolved into the multibillion-dollar, international conglomerate now called Amway. Shaklee Corporation, another MLM giant, was founded in 1956 by a retired chiropractor. Since that time, hundreds of other companies and millions of “independent distributors” have joined the fray.

Until the mid-1980s, claims made for health-related MLM products were conveyed mainly through direct personal contact in which the salesperson’s personal success story (health or financial) played an important role. Since that time, however, many companies have added slick videotapes and audiotapes to spread their story, telephone conferences to train large groups of salespeople, a scientific advisory board to seem more authoritative, company-sponsored research to appear more authentic, and endorsements from prominent persons to lend prestige. Many companies use scare tactics and cite scientific research to suggest that their products will prevent disease. NSA does all of these things effectively.

Testimonials Are not Reliable Evidence

The “success” of network marketing lies in the enthusiasm of its participants. Most people who think something has helped their health enjoy sharing their success with their friends. Testimonial-givers are usually motivated by a sincere wish to help their fellow humans. Since people tend to believe what others tell them about personal experiences, testimonials can be powerful persuaders. An NSA distributor manual notes that “as people use the product, they begin to build their own Juice Plus+ story to share with others.” Although NSA literature has stated, “We do not make any claims . . . involving the prevention, cure, mitigation of any disease,” NSA distributors have circulated statements that Juice Plus+ products have relieved a wide variety of discomforts…..

Testimonials, of course, should not be regarded as valid evidence. Without well-designed tests, it is usually impossible to tell whether changes that take place after taking a product are the result of the product, a placebo effect, or other factors such the fact that symptoms often change with the passage of time. Nor is it possible to tell whether enthusiastic, financially motivated salespeople accurately report what they experience.

The unreliability of testimonials was dramatically illustrated by the case of former football star O.J. Simpson, who was charged with stabbing his wife and her friend Ronald Goldman…..NSA sales aids acknowledge that taking Juice Plus+ is not as good as eating the recommended amounts of grains, fruits, and vegetables. But they also state that everyone should take Juice Plus+, including people whose diets contain adequate amounts of the nutrients in Juice Plus+. NSA’s “Preferred Customers” who buy a four-month supply of Juice Plus+ capsules at a time, pay about $480 per year. If every American did this, the total annual cost would exceed $100 billion. Do you think this would be a wise allocation of our national resources?

does juiceplus stop cancer

Ok so enough about Juice Plus except to say now they are all branched out into kid food, bars, and meal supplement shakes.  But they don’t talk about all the soy or the potential side effects of too much B12 and folic acid —- yes you got it, cancer.

And they neglect to mention all the soy in the products. I was treated for a hormone driven breast cancer so I know that soy is not my long term friend because  well hello phytoestrogens – soy stimulated the growth of estrogen dependent tumors found in breast cancer.

But hey I know nothing right? I am only a survivor with a really excellent care team, right?

Ancestral Nutrition also reviewed Juice Plus and they were NOT positive or polite in how they despise the products. Please, allow me, read the excerpt:

….I don’t like JP supplements….

Folic acid is the synthetic form of folate that is naturally found in food. This is a huge problem. Folate is a naturally occurring water soluble B vitamin. Folic acid, however, is a synthesized form of folate that the body is unable to properly absorb or utilize…..While folate is a necessary part of a balanced diet, folic acid has actually been linked to increased rates of cancer.

….I f*ucking hate soy. And you should too. Here’s why.

First, let’s clear up the idea that Eastern countries have been eating soy for thousands of years. Yes, Asian countries in particular eat soy. No, they do not eat soy the way Westerners do. Only recently has soy become a replacement staple for meat. Asian countries consume soy as a condiment. In soy sauce, in miso soup, in aminos. They almost always ferment their soy which reduces the enzyme inhibitors, goitrogens and phytic acid that is naturally present in soy.

In the US, soy is not only one of the highest GMO crops (upward of 90%), it is also eaten as a staple. It’s in junk food. It’s in health food. This is because of a genius stroke of marketing. What do you do with a crop as useless as soy? You convince people it’s healthy.

You extract the oil from it using a process of extremely high heat, hexane (a neurotoxin) and bleaching. Then with the leftover trash from this process, you create soy protein – what you find in meat substitutes and cheap protein shakes (except Juice Plus isn’t so cheap).

This study found that soy stimulated the growth of estrogen dependent tumors found in breast cancer….

….prolonged consumption of soy protein isolate has a stimulatory effect on the premenopausal female breast, characterized by increased secretion of breast fluid, the appearance of hyperplastic epithelial cells, and elevated levels of plasma estradiol…..

Soy is high in phytic acid, also known as phytates. These phytates prevent the absorption of minerals like magnesium, iron, calcium and phosphorous (among others). This can be particularly problematic, especially for children.

Soy is also high in goitrogens which can interfere with the thyroid hormone, leading to hypothroidism and even cancer…..Soy is high in phytoestrogen (source). This can interfere and block normal estrogen, leading not just to hormonal imbalance but even breast cancer…..A study from Harvard found that men consuming the equivalent of one cup of soy milk per day had 50% lower sperm count than men who did not consume soy (even accounting for other factors like age, caffeine and alcohol intake, etc).

 

Yeah, so I rest my case.  If you have cancer or pop BRCA positive and you want to live a healthier lifestyle by all means seek out a nutritionist or even holistic practitioner to create a healthier lifestyle. But do not use it in lieu of science and traditional medicine. Mutated genes are NOT going to go away just because you eat lots of broccoli or buy supplements like Juice Plus.  As a matter of fact your doctors should always know all supplements you take.

Other than vitamins without soy I take Maca Root and Curcumin.  My doctors know and they know how much.  When I was in treatment , I came off all of that stuff.  recently when I had an unexpected bout of acid reflux (caused because I took too much ibuprofen getting over wrenching muscles in my back), I had to come off the curcumin for a while because it inhibited the prescription I was given for a month to help myself heal.

My doctors are my partners in staying healthy.  They know everything I do, and I ask them when I am considering any changes.  I actually considered Juice Plus believe it or not a few months ago.  I did lots of research and at first I was not signing on the dotted line because of the cost.  But then the more research I did the more questions I had.

So I asked my medical team and the nutritionist who had been assigned to me during my surgery and radiation treatment.  They were all blunt in their response which was a resounding “no” especially because of the soy content and what that article above I quoted said about folic acid and B12 and so on.  The nutritionist pretty much summed it up when she said there was no magic bullet and everything I was wanting in those supplements was best found naturally occurring in foods.  In other words, more fruits and veggies and so on.

So yes, yesterday I was somewhat angered and outraged that these women would literally prey upon a person reaching out with overwhelming news of the BRCA gene mutations. It is such bad form.

And then they were also pushing a non-profit I never heard of less than 24 hours ago, The Center for Advancement in Cancer Education otherwise known as BeatCancer.org.

They are right here in Pennsylvania and I have heard of almost everything breast cancer related after five years but not them.  They have a fancy schmancy website and seem to operate on “testimonials.”  They also do not seem to have any actual oncology experts on staff.

I found it amusing their name was so close to one of my favorite breast cancer non-profits, BreastCancer.org, which is completely wonderful, legitimate, and founded by my radiation oncologist. That woman helped save my life quite literally, so I think she knows what she is talking about.

These BeatCancer people, I am not so sure of.  First of all they sell “cancer kits”.  You know, none of my doctors sold me cancer kits, they gave me lots of information and access to all sorts of things including licensed nutritionists and therapists as part of my breast benefits.   And reputable non-profits like BreastCancer.org and Living Beyond Breast Cancer sent me all the information I requested without asking for a dime. But no, these BEATCANCER people sell kits like you are going to go crafting and cure cancer with macrame beads:

cancer kits

As a matter of fact, BeatCancer would like to sell you LOTS of things. To further add to my mounting suspicion of them , I guess I should mention their partnership with Juice Plus, right? Would I lie?

Nope, check it out:

juiceplus

You know I love my screen shots.

So this all made me go to Guidestar to further check them out here have some more screen shots (and not how much they spend on things like advertising):

bratcancer.org

call center cancer prevention training

at a glance corporate governance how they spend 2 how they spend

2014 990

Beat Cancer AKA The Center for Advancement in Cancer Education Financials 2015

Gudestar report on BeatCancer

 

So don’t take my word for it, do your own research.  The Center for Advancement in Cancer Education AKA BeatCancer.org and Juice Plus do not pass the smell test with me.

So maybe it is just me, but sometime if it walks like a duck and quacks like a duck, well it’s a duck. And for a non-profit, I did not find what GuideStar had to say a ringing endorsement. And the corporate governance stuff I found troubling.

As for Juice Plus, in the end there are no magic bullets.  And the fact that so many of the people who sell it basically say how it helps cure cancer and helps prevent cancer when there is nothing legitimate  to back it up and they insist a supplement is in fact not a supplement because it’s a marketing ploy? Well, yeah, I find all that troubling too.

These are my opinions based on my own personal research.  Do your own before you give money, buy products, or take the advice of a non-medical/oncology professional.

It’s just common sense. Or you can read Scary Mommy on their take of people who try to solicit you on Facebook.

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#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!!!!!!!!!

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

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.

 

IMG_5062 

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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