NotoriousMBC – What’s in a name

 

So, am I ⁠

Question: Sherry or Shaw-ri? ⁠

 

Answer:   Shaw-ri

My entire life the double pronunciation shows up

 

Question:⁠.  Sheranian, what nationality is that?⁠

Steve’s family culture is originally from Armenia.

If you remember that fact. You can usually pronounce the surname name.

 

Put them both together:

People like the way it rolls off the tongue.       Shari Sheranian

⁠and where or why did I choose

“NotoriousMBC”⁠

Opening the door a bit⁠ –  Or I often say to Steve,  “inside my mind and/or madness”

 

I have thought through the years of changing the name.

People ask about it and just don’t understand it.

 

And I am so glad I have did not.

It means more to me now than ever before.

This is my why behind the name

 

I was pondering for a name, my website, blog, for my overall story.  

The NotoriousRBG came to my mind.

And that was it.  

NotoriousMBC

Notorious Metastatic Breast Cancer

www.notoriousmbc.com

Learn a little more about the NotoriousRBG

 Top 10 Amazing Amazing Facts about RBG

For this list, we’re looking at fascinating facts about this prominent political figure and a progressive icon who was one of the first women appointed to the U.S. Supreme Court.

At 5’1″ and barely 100 pounds, Ruth Bader Ginsburg earned her nickname The Notorious RBG by the sheer force of who she was as a judge: a feminist icon, a rebel, an unwavering voice and advocate for justice. And yes – after Notorious Big’s died, the public coined her nickname, and she was a cultural icon.

 

Supreme Court Justice, Ruth Badder Ginsburg made wearing her infamous dissent collars as a statement.

 

And she had a closet full.

Each collar meant something specific about the time she spent as a Supreme Court Justice.

 

I can understand Ruth finding something to wear over the black robes that would drown her petite frame.

 I’d love to know if she left these collars to anyone specific. I believe that many she received as gifts.

RBG has a specific sense of humor that everyone loved.

 

This now-famous collar came into Ruth’s possession when she attended the Glamours Woman of the year event in 2012.

She received this in a “swag bag” at the event. She explained that she chose to wear it as her dissent collar while serving on the Supreme Court from this point forward.

 

When asked why this is the dissent collar, she told Katie Couric that quite simply, “It looks fitting for dissent.” RBG is known to wear the collar when the Supreme Court announces a decision she is against, but she has worn it on other occasions, such as the day after Donald Trump’s election in 2016.

 

Many are saddened. We knew it was coming. 

 

The number of times she has battled cancer and been in active treatment. As a cancer patient, I cringe when people say to me in conversation that I am putting in a “good fight.” 

 

In my thoughts, Justice Ruth Bader Ginsburg is the name that comes to mind. 

 

She is a woman who I have inspired to emulate through life. She is an “Icon,” a “Force” as a woman, feminist, and a cancer patient. 

 

I feel a bit selfish, knowing how much of her life she has accomplished. I know there were many days that she fought on feeling like shit.

The will never be another like her. Thank you RBG

 

 

 

 

 

Symptoms & Diagnosis – Breast Cancer IDC, Stage 4 Triple Positive

 

What were your first symptoms?

I noticed the lump in December of 2015. It appeared out of nowhere. It wasn’t sore or anything. It didn’t change or get bigger after I started watching it.

I really didn’t have any other symptoms that were apparent. I had decided to get back into shape in the Fall of 2015, and I had done that before and not had any issues. This time around, though, it was harder. It was weird for me.

I did notice a little heaviness in my chest, and now with hindsight, that might’ve been something that was a symptom of cancer.

 

How did you get diagnosed?

I had a mammogram in April of 2016. The radiologist saw that mammogram while I was still there and told me I needed to go see an oncologist.

I had saline implants, so instead of a needle biopsy, they went in surgically for a lumpectomy. It was a same-day surgery. The next week, I got the diagnosis of breast cancer.

They took out the lump and the margins were fairly clean. They said they had good therapies for triple positive and HER2, but then they wanted to check the lymph nodes. They did a PET scan. The day I went back to the oncologist to start my chemo while waiting on the full diagnosis and staging, I found out it was metastatic and I was stage 4.

That was a lot to take in that day, but the treatment was still the same. My oncologist said it was a lot of information for me to take in on one day and was willing to reschedule my treatment, but I didn’t want to. We were treating it aggressively. I was there and ready and wanted to get started.

 

How were you thinking and feeling after the diagnosis?

My original oncologist isn’t my oncologist now. His bedside manner isn’t the greatest. The day he gave me the diagnosis, he kept asking, “Do you have any questions?” We didn’t know what to ask. Finally, my husband asked about prognosis. He said I had 2-10 years depending on how well my body reacted to the treatment.

By the time I got home, I’m googling everything. I read that the next place it can go is to your brain, which the doctor didn’t even mention. I’m thinking, “Is it there too?” We hadn’t done any testing for that. My surgeon ordered an MRI for me, and at that point, it was clear, so that made me feel better.

“My husband and I just thought of it as a chapter and something we were going to get through. It took a while to realize that this would be the rest of my life. We’ve definitely started living our lives how we want to.

There’s always a reason to not go on vacation or something, but now we don’t let those things get in our way.

How did you tell your loved ones about the diagnosis?

My husband was there with me. He’s always there with me. I have four adult boy children. I told them all early that I had cancer and thought it was early stages. I had to call them all back and tell them it was metastatic, and they all dealt with it like they do with Google and research.

My parents had a hard time with it. One of my first thoughts was, “Am I gonna outlast my parents?” We told our closest family first, and then I had to tell work because I knew I was gonna start losing my hair.

The full article is linked below

Breast Cancer IDC Triple Positive A Patients Story

A Patient’s Experience – My Interview for Curia

A conversation with Shari Sheranian

05. 05. 2020, Eschborn, Germany.

Being your own medical advocate can be daunting as a cancer patient, but it’s what has helped Shari the most throughout her journey. As a breast cancer warrior diagnosed in 2017, mother of 8 children, and motivational speaker, Shari holds a wealth of advice and anecdotes on the challenges of cancer. Now, during the Covid-19 pandemic, her advice is more applicable than ever.

Thank you for sharing your story and experience with us today, Shari. Could you start by giving us a brief overview of your current medical state? Are you still receiving treatment?

Yes, I am currently in active treatment since June 2017. As a triple positive metastatic breast cancer patient I am currently having Herceptin and an aromatase inhibitor every three weeks. In June 2017 I had metastasis in both lungs, liver and one spot on my back. In March 2018 a PET scan from the neck down showed that my body was showing NEAD. Which means no evidence of active disease. My treatment was continued because I was already considered a late stage cancer patient. The Herceptin has served me well in helping to keep me NEAD from the neck down since that date.

Are there any resources that have been useful to you through your journey that you can recommend to other cancer patients?

I have learned a lot through women who have a similar BC diagnosis. The place that I have found them open to sharing is in a private Facebook group. I’ve gotten the best information and support when I joined a specific group that only accepts a patient who has the following diagnosis: stage four, triple hormone positive breast cancer and the cancer has spread to their brain. As my cancer has progressed and I’ve found myself dealing with new fears and unknowns this private group has given me the knowledge and support that I need. Unfortunately, it isn’t always a pleasant discussion to read but late stage cancer never is. I am a bit of a realist and I’m a say it like it is individual. I would rather know the good, the bad, and the ugly. It helps me emotionally prepare for what might be next. It often reminds me that I am doing very well physically considering my diagnosis. This also helps my emotional mindset.

We agree with you on the importance on staying informed. What are your thoughts on support groups? Are you involved in any?

I have tried a few support groups. Have I found one that I feel is a great fit? No, I haven’t. My experience has been that breast cancer patients tend to get together when their diagnosis is different. Those who are early stage and hopefully curable, to those who have a metastatic terminal prognosis. I feel that often early stagers have not been educated regarding the fact that once you have been diagnosed with an earlier stage cancer and even been in remission for over five years there is still a chance that your cancer will come back. People don’t understand this or some choose to keep their head in the sand. People are scared to talk to people who have a terminal prognosis and they certainly don’t want to talk or learn about EOL issues. I’ve found it impossible to find a resource or support group in the state that I live that is specifically for metastatic breast cancer patients. It is difficult to connect with national groups but I have been active in them when they do offer things and I am able to spend the money to travel.

What are the biggest unanswered questions you are asking yourself?

When will I need to make a decision between quality and quantity of life. How will I know it is time to make that decision for myself? I want to do this before I end up unable to enjoy the time I have left.

Are there any big questions you have regarding coronavirus and your treatment?

Is there any reason that my current treatment will change because of the COVD situation. It hasn’t for me.

How do you feel about the current messaging in the media (e.g. news, social media, etc.) about Covid-19 and cancer?

I feel that there has been little media that is covering the issue in my state. If I wasn’t on social media daily I wouldn’t know the information that I do. The message is getting out by cancer organizations and nonprofits. But most of the information that I see is coming from the cancer patients themselves as they learn more from this organizations as well as their own cancer and coronavirus experience.

Lastly, what advice do you have for other cancer patients reading this?

Learn what you can about your specific diagnosis and the current treatment protocols. Everyone’s cancer is different. Learn from other patient’s experience but don’t expect yours to be the same. It will have similarities and this can be helpful. Speak up and don’t be afraid to keep asking questions. Don’t be intimidated by the oncologists. Learn what you can before you go to your appointment and always have a few questions written down. This is all part of being your own medical advocate. Often a patient becomes a number. I don’t believe that the medical professionals mean or want for this to happen but at times you will feel this way. Develop a relationship with your oncologist. This will happen over a course of time. For myself as a stage four patient there are often difficult and uncomfortable conversations to have. Forming the trust and communication with my oncologist helps both of us feel more comfortable.

Shari’s Links:

Website: https://notoriousmbc.com

Instagram: https://www.instagram.com/notoriousmbc_

Twitter: https://twitter.com/notoriousmbc_

Facebook: https://www.facebook.com/thecanincancer

About Curia:
Curia is a mobile application dedicated to providing information for cancer patients on Treatments, Clinical Trials and Experts. Curia is a part of the Innoplexus AG, an AI-based Drug Discovery and Development Platform, based in Frankfurt, Germany with offices in New Jersey and San Francisco, US, and India.

Quarantine should be a time of relaxation

 

 

A short update

Dr. W = Oncologist
Dr. R = Neurosurgeon

A few days ago, I had the opportunity to meet with my oncologist.

I am now tappering off of the dexamethasone
This will take several weeks before my body will be ready to be “dex” free.

I have mentioned to you that I felt my weight had increased. Thank you, steroids, and COVID quarantine.

I had one surprise at this appointment.
I actually weight two pounds less than six weeks earlier.
And to that, I ate another donut.
I enjoyed it.

Now I am sitting in an unknown.

With yet another brain MRI to be scheduled (it has been seven weeks since my last brain scan) and the opinion of Dr. R, I will need to decide on what “I feel” is best for treating the situation.

And honestly, today I don’t know which I will choose.

For now

I am waiting for the approval and scheduling of the MRI.

I am waiting for a very busy neurosurgeon to speak with a busy oncologist.

They will be discussing exploring or determining the feasibility of resection of the CNS metastasis. Will that be one, two, or the possibility of all three tumors.

Dr. W was happy to tell me that a new drug has now been approved by the FDA for treating MET HER positive brain tumors.

Tucatanib has met approval standards with possible improved Central Nervous System penetration. This, I would be taking in daily pill form and would be combined with my continued Herceptin and Xeloda infusion. I will also continue taking my daily Anazatole, which helps to decrease the amount of estrogen my body produces.

This sounds like a great option. But there are always side effects.

Dr. W specifically spoke of the choice I had previously made to have surgery. (oophorectomy “ovaries removed)

I wanted the surgery to take place because I no longer wanted to be taking the drug Lupron. I had already had a hysterectomy years earlier. Why would I need my ovaries?

My life during the Lupron phase of treatment was painful with side effects.

I just did not want the Lupron in my body.

The surgery eventually took place, not needing the Lupron drug has granted me far more quality of life over the past few years.

At the time, removing my ovaries was not fully supported by Dr. W.

But after the fact, at today’s appointment, Dr. W was admitting that the surgery was the right choice for me.

This part of our conversation is now on repeat as I think about getting to the best possible outcomes.

 

How am I physically feeling

 

My body had become accustomed to the dexamethasone and now as I am tapering back off.

 

I am now again experiencing the symptoms and side effects of brain lesions and long term cancer treatment.

 

The energy I was enjoying two weeks ago is now in the toilet.

 

I am learning to get back into the habit of taking breaks during the day.

 

I’ve always expected a lot from my physical and emotional stamina.

I am grateful I had the opportunity to have those weeks of feeling “normal”

Not everyone has that experience while taking steroids.

 

This isn’t an easy thing for me to accept but I will.

Quarantine should be a time of relaxation.

Shari

 

 

 

Fear is to be understood

 

 

𝘕𝘰𝘵𝘩𝘪𝘯𝘨 𝘪𝘯 𝘭𝘪𝘧𝘦 𝘪𝘴 𝘵𝘰 𝘣𝘦 𝘧𝘦𝘢𝘳𝘦𝘥 —

This is a loaded statement.

The elephant in the room that people are not comfortable talking about is death.

I believe that anyone who is traveling on a late-stage cancer road, death is a conversation they are willing to have.

Or at least that is my experience.

Mind you, not everyone wants to hear what I have to say about it. And sometimes I walk away, biting my tongue because of the uneasiness that it has caused.

People who know me well will confirm that. 

I am always an open book.

If you don’t want to hear my opinion, you shouldn’t ask me.

My argument if I really need one,

is it is time to understand more,⁠ ⁠so that we may be fearless?⁠ ⁠ ⁠ 

When I say understand more, I’m not saying my thinking is right or wrong.

It is merely what I have found to be the truth for myself.

How do we understand our fear or at least accept our fear?

Inner peace

What brings me peace when I think of my fear “death” as my example won’t necessarily feel the same for you.

I have learned to develop an inner-peace through my experience.

Over time I’ve found what works for me. I refer to it as “my personal way” of mediation.

 

This is the beautiful thing about meditating — 

It is what you decide it is for you.

 

Sitting still in a room and trying to meditate has never worked for me.

 

A few years ago, I noticed that when I was disconnected or found myself in an unfamiliar physical space– my thoughts were less restricted. 

 

I was training my mind to way to drift into a different place.

 

When I have the opportunity to be in the silence of nature, my own meditation process becomes very natural.

Laying in an MRI machine is obviously the furthest thing from being in the great outdoors.

But I’ve learned to trick my brain.

 

Whatever it takes to “let go,” this is when my mind clears of the everyday thoughts.

 

I begin by moving my thoughts to gratitude.

 

I use memories that bring my loving, grateful, and peaceful moments.  

This helps my mind to go from one grateful thought to another.

 

Each time I’ve had the opportunity to travel, I collect memories specifically to recall for a needed time.

This works well for me.

When I need to, I can mentally and emotionally travel to different destinations by using my memories.

This is what calms me.

 

I use this method when I undergo cancer testing and scans.

The times when I need to release anxiety.

 

I have noticed that when I’ve completed my own meditative experience, I often have my best ideas come to mind.

 

an example

 

When I’ve needing to reach out to a family member or friend. Not knowing how to handle a situation.

 

It is very affirming to me that I have reset my mind and spirit and am ready for comes next.

 

Again, there is no right or wrong way to meditate.

You don’t need to call it meditation.

 

Do the discovery that is waiting for you.  It is there for you to reach out and touch it.

Your personal journey to experiencing inner peace.

⁠ ⁠ ⁠

When Estrogen goes from Friend to Foe

 

 

We all have our dates – dates that no matter how hard we try, we’ll never forget the sounds in the room, and the feeling in your stomach the moment you either experienced complete bliss or absolute trauma.

 

For me, it was April 22, 2016.

 

It was 8:30 in the morning when my right breast was firmly pressed for the mammogram.

By 9:00, the radiologist was telling me I am going to need an oncologist and surgeon, and the words you have cancer came out of his mouth.

That was that and off to work and the rest of my life.

 

Fours years ago, cancer disrupted my life.

It was just ten days later when I first heard the words metastatic breast cancer but I had no idea what that meant.

 

I made a decision just days later on how I would choose to understand what this diagnosis would mean for me.

 

I had already learned through life experiences that depending on how I chose to tell my story would determine the life I lived moving forward.

I can not look into the future, but I can look into myself.

 

I can ask myself questions. The same concern often pops into my mind.

Who am I, and who do I want to be.

 

People ask what keeps me moving forward.

I do believe that miracles happen every day.

I know that I can create miracles.

 

More important for me is to keep in mind that life’s journey may not always be straight or perfect.

 

My path is full of missteps, lessons, and at times suffering.

 

But honestly whose isn’t?

 

This life of mine is pretty incredible.

Difficult?

Sometimes.

Conflicting and confusing?

For sure!

A little heartbreaking at times?

 

Maybe, still, I think I’ll keep going, you know, to see what happens next.

 

Yes, when you find you have pulled the card and the hand of terminal illness, it changes you.

 

When you make a decision to change how you look at the world, you change the way the world looks at you.

 

Today is April 22, 2020, and I am marking it as my Four-year Cancerversary

 

My wish for you all this next year is filled with love and health.

Shari