tamoxifen and other breast cancer crowd-sourcing.

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I wasn’t planning on writing a post on this blog today but I think I must.  A breast cancer group I belong to had a post from someone who was crowd-sourcing opinions on Tamoxifen. Specifically, she was considering not taking it because it might affect her sex life.

Honey? News flash? You have or have had breast cancer and there are some new normals at least in the short term.

But to consider NOT taking a drug which is designed to reduce your risk of recurrence post-surgery and post-treatment because you fear for your sex life?

O.M.G. I am aghast. Sorry but I am.

I am almost in year 8 of 10 on Tamoxifen.

The only halt to one’s sex life is the one you impose personally. Breast cancer has a lot of inconveniences.  You adjust.  Why do you adjust? BECAUSE YOU ARE ALIVE!

Tamoxifen induces chemical menopause yes, but, that doesn’t mean your life as a vital woman is ending. It’s an adjustment. It’s lubricants needed….like most women going through menopause.

I have had hot flashes, joint pain, some insomnia, mood swings, weight gain, fatigue (which ends up was more thyroid driven which got partially fried during radiation so I am on a generic synthroid) BUT I am going to be blunt here: you’re a long time dead.

And I would do it all over again. I chose to reduce my risk of recurrence post-radiation. If I hadn’t chosen to reduce my risk of recurrence I would be playing Russian Roulette with my life. No thank you.

And NOT EVERYONE HAS SIDE EFFECTS. Truly. If someone is going to base NOT taking Tamoxifen on their sex life, well, I think that’s dumb.

Again, sorry, not trying to be unfeeling but ladies, you need to count your blessings, starting with being alive.

Your body, ultimately your choice but honey, I turn 55 tomorrow and I am not my ideal weight but I am loving my life. AND I WILL SAY IT AGAIN: I AM ALIVE.  This time in 2011 when I started this blog I did not know for sure I would be. I wanted to be, but hell I did not know. I had not had surgery or treatment.

And I did not crowd-source Tamoxifen. I went to the professionals. My doctors and my nurse navigator back then.  Seriously, May 16, 2011 was around the first time I had to think about Tamoxifen.

Tamoxifen is still one of the most effective cancer drugs out there.  Do I wish I never had to take it some days? Hell yes, like last night when my joints felt like they were on fire.  Or a couple of weeks ago when one of those lovely occasional waves of Tamoxifen mood swings struck.  A lot of people won’t talk about it or think you are weird if you do. I have struggled with this from time to time since radiation and all through the years of Tamoxifen with days that are just down.

I have to say it out loud sometimes:  I have days where I am just down. No logical reason to be down, it just is. I have had a few recently. They are awful. But I get through them.

A friend of mine who is a fellow survivor said to me recently:

I feel like they could do a better job of treating the whole person. I’m on Tamoxifen too and some days the sadness is like a rogue wave. I think people don’t like to hear about this stuff, because it makes you “weak.” The world applauds when you’re smiling and strong. Most days I have to push myself.

Yup. And I know people sometimes have a hard time reading blog posts I have written here that aren’t all cheerleader perfect. News flash, I was never a cheerleader.

Breast Cancer is a pain in the ass.  Any cancer is a pain in the ass. But seriously? Chose to live your best life.  And if you need reassurance, by all means seek it out.  But do not crowd-source your treatment. That is between you and your healthcare team. We can all as survivors tell you how we felt during different times, but every cancer is different.

You have doctors. Talk to them. Get your game plan on with them. If you have to add a therapist, do it.  No one has ever been harmed by a little mental tune-up.  But get real because breast cancer is as real and as ugly as it gets.  One day at a time. That’s how you do it.

I will close with this article a friend pointed out.  It’s pretty raw but pretty damn amazing.

Happy almost birthday to me.  Happy to be here and to be able to be opinionated. I am not and never will be Pollyanna. But I am alive. And I love my life. So there.

The New Yorker: Personal History
What Cancer Takes Away
When I got sick, I warned my friends: Don’t try to make me stop thinking about death.
By Anne BoyerApril 8, 2019

Before I got sick, I’d been making plans for a place for public weeping, hoping to install in major cities a temple where anyone who needed it could get together to cry in good company and with the proper equipment. It would be a precisely imagined architecture of sadness: gargoyles made of night sweat, moldings made of longest minutes, support beams made of I-can’t-go-on-I-must-go-on…..For months, my body’s sadness disregarded my mind’s attempts to convince me that I was O.K.

…..No one knows you have cancer until you tell them…..The cancer pavilion is a cruel democracy of appearance….The boundaries of our bodies break…..Every movie I watch now is a movie about an entire cast of people who seem not to have cancer, or, at least, this seems to me to be the plot….I am marked by cancer, and I can’t quite remember what the markers are that mark us as who we are when we are not being marked by something else.

….People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse. We are supposed to keep our unhappiness to ourselves but donate our courage to everyone. We are supposed to….as in “Sex and the City,” stand up with Samantha in the ballroom and throw off our wigs while a crowd of banqueting women and men roars with approval….We are supposed to be legible as patients while navigating hospitals and getting treatment, and illegible as our actual, sick selves while going to work and taking care of others. Our actual selves must now wear the false heroics of disease: every patient a celebrity survivor, smiling before the surgery and smiling after it, too. We are supposed to be feisty, sexy, snarky women, or girls, or ladies, or whatever……

 

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hating bras and some general bitching.

One of the things that I hate the most post breast cancer is finding freaking bras that fit. I did not have breast reconstruction surgery, so I’m lopsided.

And as the years go by and the breast tissue adjusts and settles I get more lopsided.

I can’t wear an underwire bra as they hurt. One breast is one cup size and the other breast is about half of a cup size smaller. Tamoxifen has made me plus size and it’s just hard all the way around to find bras that fit.

I have tried expensive bras, moderately priced bras and cheap bras. Ironically, the ones that fit the best for the most part are the most inexpensive.

I don’t regret not having breast reconstruction, plastic surgery is not my gig, but I just wish someone could design a bra for us that fit. It shouldn’t be “well if you got your breasts fixed then you could wear bras again.”

Thanks no, I choose not to have flotation devices surgically attached to my body. Why can’t bra manufacturers make better bras?

Lately I have also been going through one of my fighting with my own self-image stages. I don’t feel attractive, I don’t feel pretty. It happens. And it generally happens when my sleep has been off, and it has. I am sleeping much better than when I first went on Tamoxifen and before my subsequent hysterectomy, but sometimes there are just times when sleeping sucks.

And I am also going through a phase where I have a lot of joint pain. It’s not Lyme disease, if I had to be honest I would say there is probably a little bit of arthritis mixed in with the Tamoxifen joint pain.

Almost 8 years post breast cancer and I am doing very well for the most part. I’m alive for starters. And I have a good quality of life. But sometimes I am just tired. I don’t mean to sound ungrateful, because I’m not. My life is full of blessings.

I wrote an article today about gardening and how gardening teaches you patience if you let it. Patience is a virtue I sometimes have in very short supply.

When I first started this blog eight years ago I promised I would be honest with my readers. So all along this journey I have showed you the good the bad and the ugly. Maybe some of you think it’s ridiculous that I am bitching about bras not fitting, but it is just one of those things. And today is one of those days where I think Quasimodo would have an easier time getting a bra fitted for him as the hunchback of Notre Dame, versus me as a breast cancer survivor.

I’m also getting a little people weary. What I think I need to do, but I know I don’t like to do is search for a little more “me time”. I don’t like doing that because it feels selfish. But sometimes you just have to do what is best for you. I can’t be all things to all people. And that is a very female thing. We are all supposed to be Wonder Woman on this bus, only we’re human.

Thanks for stopping by.

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things not to do with this blogger

Image result for oh you want to have an opinion on my opinion

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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