things not to do with this blogger

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So let’s see…apparently Juice Plus still cures cancer? WOW! (Think of all the money I could have saved on surgery and treatment, right?)

I wrote a post in 2016 about someone I thought was a bit sleazy trying to prey on someone vulnerable…and sell them Juice Plus. Which was my right and my opinion.

I also don’t see the reports from my oncologist or anyone else’s oncologist that Juice Plus cures cancer.

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.

Now an update to this post is since 2016 women I know were selling Juice Plus.  I felt obligated to try the products and settled on the fruit and vegetable gummy supplements.  I paid for them for over a year. I do not think they did a damn thing. They also didn’t know that soy was in the shake mixes until I told them.

I need to avoid soy. It is a phytoestrogen. I had a hormone driven cancer.  I have other friends who need to avoid soy because they are allergic to it. NOT EVERYONE LOVES OR WANTS TO INGEST SOY!

I talk to my doctors all of the time about this stuff and they still say to me the best way to get vitamins, mineral, good stuff is naturally as in naturally occurring as in the food you are eating.

Now here we are essentially three years after I initially wrote the post and I have new keyboard critics rolling up to tell me how to be.

First there was the woman who told me I was an awful and angry person because I guess in her mind I slandered Juice Plus and other direct marketing pyramid sales gigs.

Then today there was the woman who as a fellow survivor essentially wanted me to hear HER opinion but she was far too busy to hear anything I might say in return.

Umm honey? Life doesn’t work that way and well it is my blog and I still think you are wrong.

And 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 still find all of that troubling.

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.

If my doctors weren’t so careful with me, I never would have known about the fact radiation treatment gave me hypothyroidism.  If my doctors weren’t so careful with me, I might not have found out I had squamous cell skin cancer.

I work with my doctors and I believe in a combination of eastern and western medical practices.  What I don’t believe so much in are direct marketing programs like Juice Plus. I will not apologize for that.

None of you have to read this blog.  But some of you seem to be missing the point that it is in the end my blog and my breast cancer journey.

Peace out.

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merry christmas eve from survivorland

Cancer free.

Still.

Seven and a half years. Trust me I count my blessings. I am one of the lucky ones.

I have friends who live with MBC, otherwise known as Metastatic Breast Cancer. These women are my heroes, my inspiration. They live their lives to the fullest, and show the rest of us what it is to survive. They are amazing and wonderful and strong. Even when treatment leaves them sapped of energy on occasion, they rise.

It is still a complicated relationship that I have with breast cancer. Some days it’s all warrior girl “F cancer”, and some days a lot more vulnerable. Cancer is something you can move past if you are so blessed, but it doesn’t necessarily move past you. There is that emotional component. And it lurks, playing peek a boo when it so chooses.

Yesterday I met another survivor. She is amazing and positive and strong and wonderful and I look forward to getting to know her better. She was like a bright Christmas light. When you meet cool people like this, you understand the magic of Christmas.

I haven’t written in a while. I don’t like to post unless I have something to say. Today it’s simply there is a higher power out there and if you are struggling, please have faith. Enjoy the magic of Christmas.

Also today I got a note:

Ok wow, seven and a half years later, and it makes me so happy that this blog is of value and resonates in a positive way with people. I just write. The following is organic. I am just a regular person, so it is so flattering when other sites include me. Follow this link for BreastCancerPodcast.com. You can find my blog in the personal website section of their site. Here is what they said:

It’s kind of strange to me every time someone writes about me writing about my breast cancer journey. A weird out of body experience as I view my words through someone else’s eyes.

To get this note on Christmas Eve is like getting an extra Christmas present. I have only skimmed the surface of this site, but I think it is kind of neat and draws a bunch of resources together. It is NOT a substitute for your breast cancer medical care team, but even if my blog wasn’t mentioned, I would take a peek at what they are doing.

As another year draws to a close, I will take a moment to wish all of you and your loved ones a Merry Christmas and Happy New Year. May you be touched by all of the joy and magic the season has to offer.

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mohs day

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Today is Mohs surgery day. I am in the waiting room while they see if they got all the squamous cell in the first attempt. I just paid the monsterous co-pay.  $2500. Yes, really. It was cheaper to walk in the door and have breast cancer surgery.

Like any cancer, I just want clean margins.

Last week was the large basal cell removal and sadly, it’s not healing as well as was expected. They did a wound check and took a culture sample…and I get a prescription antibiotic cream and an antibiotic. I have allergies to some, hopefully this is not one of them.

I am sitting in a room of other Mohs patients in our own special waiting room. I am significantly younger than most of the patients.

One woman right in front of me is a patchwork of burned off spots as well as a Mohs spot considerably larger than mine on her face. Yet she is nut brown from tanning. All I can think is I might not really sit in the sun after this ever again.

My face is thankfully still numb from the needles of topical numbing stuff. I will be back to finish this post when I know what is what.

HGTV is on the TV and two men are discussing some accident that was on the news recently. Me? My brain is wandering and I was thinking about my friend Allison from high school. She died of Melanoma years ago.

O.K….some time has passed and it is 2:45 PM and I am home.  It took two go rounds with the Mohs and some stitches but once again God smiled and I have clear margins.  Can’t ask for better than that.  No chemo cream, either.

I am so glad this is done.  Wonderful surgeon as well.

I have earned a nap.

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f*ck cancer, any cancer

LAUGHING-AT-CANCER-POINTLESS

I started getting religion about my dermatology appointments for skin checks after I finished radiation in September, 2011.

So how about the irony of a skin cancer diagnosis at the onset of Pinktober which I hate already especially because of the damn Ibrance commercial where the fake commercial patient is a middle aged woman named Carla with dark hair. I mean REALLY?????

So before I even had coffee or much of another thought this morning I opened up my email from my dermatologist at Penn:

Specimen A – Diagnosis CHEEK, LEFT – SQUAMOUS CELL CARCINOMA IN SITU WITH ACTINIC KERATOSIS 
Specimen B – Diagnosis ARM, LEFT UPPER – PRURIGO 
Specimen C – Diagnosis SHOULDER, LEFT SUPERIOR – BASAL CELL CARCINOMA-MULTICENTRIC

A – This reveals a skin cancer, and I will be referring you to Mohs surgery for definitive treatment (I believe this is the best method for treatment of your lesion).  

B – This is just a benign lesion, and no additional work is necessary.

C- This does indicate a skin cancer, and I will be calling you to schedule a removal of this lesion.

F*ck.

Yes I did just curse. Sadly it is my go to word with any form of cancer diagnosis.

Just F*ck.

4717b0b2db8e51f82223f2f66d76fd78Why am I posting this? First of all so you my readers know I am not Sister Mary Sunshine swami of the breast cancer blog who is above and over it.  I am most of the time ….but I have my moments.

Today I am having a moment….. or five.

This afternoon I get one thing sliced off.

Next week the Mohs surgery.

This is not my idea of fun.

Nothing with the word cancer in it is my idea of fun.

So other than getting this out of my system so I can put my positive hat back on, why am I writing about this?

To tell any breast cancer or cancer patient out there to take the dermatologist visits seriously.  Make the appointments. Keep the appointments. Just freaking DO IT. Actually everyone should have a dermatologist and get regular skin checks.

I am lucky.  I have GREAT doctors thanks to Penn Medicine.  I think I have one of the best dermatologists in the business.  He is about my skin and keeping me healthy and not a dermatologist who is trying to sell me cosmetics and botox and other “fillers”.

See? Writing about this crap always helps.  I feel the storm cloud lifting.

But seriously? No one should ever get unpleasant news before coffee in the morning. It’s just uncivilized.

Getting coffee now.

Pax

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as pinktober approaches….

Just like women used to be offended or even upset by sexist advertising campaigns of the past, I have grown to loathe the big pharmaceutical companies’ cancer drug commercials. I am also on overload on hospital and cancer treatment center commercials. They are my trigger and I hate watching them. They are my reminder that cancer lurks. Maybe that’s reality, but as a breast cancer survivor I don’t need to be smacked in the face with that all of the time, and essentially every damn day.

At the top of my list are the commercials Pfizer runs on Ibrance. Ibrance is a drug used to treat metastatic breast cancer. As per Wikipedia:

Palbociclib (codenamed PD-0332991, trade name Ibrance) is a drug for the treatment of ER-positive and HER2-negative breast cancer developed by Pfizer. It is a selective inhibitor of the cyclin-dependent kinases CDK4 and CDK6.[1][2] Palbociclib was the first CDK4/6 inhibitor to be approved as a cancer therapy by any organization, and as of December 2017 has been prescribed more than 90,000 times.[3]

I had invasive lobular breast cancer. I was lucky to be HER2 negative, and to be someone who came through with stage 2 and I also had clean margins. I was able to escape chemotherapy and only have radiation. The word “only” is somewhat subjective because the radiation has caused other issues down the road along with the Tamoxifen. Treating cancer has completely abandoned my digestive system, and given me mild hypothyroidism, slight osteopenia, and early growing cataracts earlier than I ever should of had to have worried about them.

OK I’m going to put my big girl panties back on and say would I do it all over again to stay alive? No doubt. But I am tired of the cancer commercials. And Pfizer has added insult to injury by naming one of its cancer victims in the Ibrance commercial which is used to treat women who live with metastatic versions of my cancer Carla. Every freaking time I hear the commercial my brain snaps. I often change the channel if I can’t forward through it because I have such a hard time hearing my name and the type of cancer I had in a commercial on television.

“Carla is living with metastatic breast cancer….” the female narrator begins. I hear my name, and boom! that fear rises in my throat every time….the woman is middle aged with dark hair and a family.

I just can’t process this commercial. I am having a harder and harder time with all of the cancer related commercials the inundate us on TV. They are as bad as the political ads starting up. And much like the political ads, big Pharma and hospital systems and what not will be going gangbusters because we are on the eve of pinktober.

I am seven years cancer free. I count my blessings as a survivor every day. But I wish I didn’t have to be smacked in the face with this via commercials as often as I am.

I can’t be the only one who feels this way I am guessing.

Sign me #pinkoverload and it is not even #pinktober yet.

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survivors have a responsibility to pay it forward

I am 7 years and 1 month breast cancer free. I would not have gotten here without the occasional support of other survivors before me.This is, after all, a journey like no other. And not a journey I would wish on anyone, but it’s part of life…sadly.

I don’t pretend to be an expert on this disease, and everyone’s cancer is different so I can only say what worked for me. Part of what worked for me is this blog, which is like a living online journal of a sort and talking about breast cancer openly. I think journaling helps. You don’t have to blog, but try to journal. The exercise of getting the myriad of emotions out is so helpful. Think of it as releasing toxicity.

People almost visibly wince when you mention breast cancer. Ummm, yeah, don’t wince on my behalf because (a) you didn’t go though it, I did and (b) I am alive.If people are uncomfortable when you say you have or had breast cancer, let that be ON THEM. Not you. You have no damn reason to be uncomfortable because they are uncomfortable.

I believe being open with your friends and family is important because they are your support network. That doesn’t mean the support network gets to run your disease, however. They are there to support you, not control you. If they can’t be supportive, let them go for a while. Your energy needs to be on you.

Be positive.

I am not always positive, I don’t think it’s humanly possible 24/7, but I try. But deciding to be positive through surgery and treatment made a difference.

Don’t be afraid to ask questions of your care team. It’s their job to answer every question you might have. You are paying them to save your life, after all.

Take advantage of “breast benefits” – nurse navigators, nutritional and psychological counseling, and so on.

Be prepared to take on health insurance companies. Again, you are paying them for coverage and you don’t have to necessarily take what they say lying down.I know, I know this all sounds exhausting. But it’s not so much that as simply being proactive, and being your own best advocate.

Even if you think you can go to appointments and treatments by yourself, don’t. Trust me, extra ears are so helpful. And the company helps. Among the hardest things for me going through treatment was watching other women doing it alone. Don’t be alone through this.

Post cancer life is your new reality. I have been pretty lucky, save some side effects from radiation treatment and Tamoxifen.

The Tamoxifen side effects are hot flashes (which 7 years in to a 10 year drug plan have regulated a bit and aren’t as bad as they were the first couple of years) and early cataracts. Now I have had family members on both sides of my family with cataracts, so chances are mine would have happened anyway, but Tamoxifen has accelerated them so I am growing them in my 50s. When they are “ripe” I will have them removed. I also have intermittent joint pain. I do NOT like the joint pain, but exercise does help.

Radiation. Well while undergoing radiation my hair did thin out a little and it changed texture for a couple of years. It also made me bone weary towards the end, so remember even Wonder Woman takes naps. Radiation therapy can damage your thyroid. That is something new for me, hypothyroidism. But in fairness, genetically it may come naturally because apparently my mother has been off and on synthetic thyroid meds for decades. And my sister lives with Hasimoto’s. I was recently diagnosed with hypothyroidism.

I am a bad cancer survivor sometimes and like to avoid needles and blood work. But a nice but firm nurse practitioner who works with my primary care physician made me sit still for a full physical. Now I understand why I kept getting so tired, even with proper amounts of sleep. We will see how I do on thyroid meds and I have more blood work in my future.

Look, do I like the fact that even 7 years post breast cancer I have way too many doctors appointments? Oh hell, no. But, the bottom line is I chose life and we are a long time dead.

I still have the newly diagnosed and family members of newly diagnosed reach out to me. Some folks I know, some I don’t know. But I want to pay it forward so even if it is just me lending an ear I try to do it.

Recently someone reached out who has a loved one with a stage 4 diagnosis. That is hard for me because I was stage 2 and very, very lucky. Metastatic cancer is tough, and their loved one had the initial reaction to refuse treatment. I hope their loved one changes their mind, but if they don’t, I hope everyone respects her decision. Breast cancer is a real my body/ myself moment. I chose to fight and I chose to have the recommended treatment. But not every human being is going to chose the same path as horribly cruel as that sounds. All we can really do is love one and other at the end of the day.

Another recent development is once again learning about women who have never had mammograms. Sorry, not sorry, THAT terrifies me. Is the old boob squish fun? No, but again, you’re a long time dead, so take advantage of every damn mammogram and every bit of genetic testing available.

If you are a survivor, don’t hide. Shine your light. Pay it forward.

Again, I don’t pretend to be perfect. And as survivors are we suddenly blessed with advance medical degrees? No. But we’ve been there. So pay it forward. We’re all only human, after all.

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the waiting is the hardest part

June 1st was 7 years.

Today was the official all clear.

Lucky seven. The waiting is always the hardest part.

I am still one of the lucky ones. That is hard some days to wrap one’s head around.

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