Denial is a great thing?

 

This photoshoot took place ten days ago.

 

Here I am

 

Let’s start with body image.

You will see the different shots through this article.

I am going to share my thoughts with you today.

I’m talking about all the times I’ve stayed away from a social media post that deals with breast cancer. Are they all sharing the whole story or the entire truth?

When first diagnosed in 2016, I had not been personally involved in or sat beside anyone else dealing with this disease.

I believe that if you haven’t experienced it, you will remain naive.

I believe this works in our journey of life.

October cannot serve as a pink profit capitalization. The five-year survival rate after a stage four breast cancer diagnosis is 22 percent.

The color pink is not a cure.

Breast cancer is one of the most funded cancers in the world. However, more research must move forward, metastatic breast cancer, spreading to another part of the body.

We are losing too many loved ones from a breast cancer diagnosis in 2020.

Let’s not subject ourselves to pinkwashing and forgetting the reality that breast cancer presents.

and now

Another short rant from me

I believe we should always work on ourselves.

If you have experienced this as a late-stage or metastatic patient, I know you understand and have experienced this.

You learn to bite your tongue.

Suppose I am asked specifically about this.  I will share what I have learned.

But

If I had a dollar each time I hear from an earlier stage breast cancer patient or their family member mentions.

“I was in stage 1-2 ” It has been five years. My cancer illness is complete.

I pray these people are one hundred percent correct.

There is a percentage out there that cancer will return to their body at some time and place. The more years you stay cancer-free; yes, the better the rate and your chances that this doesn’t happen.

Those first five years are frightening.

You hit that five-year mark, and you haven’t had a recurrence, and that is a huge deal.

Positive and realistic is what I pray we all can be.

Please don’t ruin your life by obsessing about cancer.

We always need to be working on ourselves.

This is how I feel about being a stage four patient.

She said it so well.

Oliva Newton-John

“You know what? I don’t know what my time is, but I need to enjoy my life. So, I’m going to eat a cookie if I want it. And I’m going to have a cup of tea if I want it. And if I want to have a little bit of wine, I’m gonna do that. Because of the joy of life and everyday living has to be a part of that healing process as well.”

And Scene

September 2015 Less than a year before mbc diagnosis

How do you stay in the moment and stay present and not let it consume you and worry you?

Why me?

“Why me?” has never been a part of it

I have never felt victimized.

Shortly after my diagnosis in 2016, I was internally asking myself—this question.

“Why not.”

Maybe I needed to create a reason to make it ok for myself.

I’ve told so many of you through the years.

You choose to.

I keep the following this close to my heart.

Cancer isn’t necessarily a death sentence

Compassion and empathy for others is a healing force

Gratitude is the best medicine

feelitonthefirst 2018

The Prognosis

The percentage of people who pass away because of metastatic breast cancer is very high. If I were to focus and obsess on those numbers, I most likely would not have surpassed what the doctors told me in 2016.

Yes, it does cross my mind. Specifically, when I get reminded that I have tumors growing in my brain or repeat PET scans due.

So I sit there, and I feel it. I get scared and emotional. I’ve learned to work through these emotions and, most importantly, move forward.

I focus on finding peace in every moment.

I search for the positive and the intention behind my thoughts and actions.

As well as others.

I dream of the future.

I affirm what that future looks like.

May 2019 – a year before dexamethasone. I thought I was overweight and out of shape. Fat has always been my own body image. zzz

I do my best not to think about it all often. It is easiest to explain this by simply stating I don’t obsess.

I work on keeping my mind and heart at peace.

And the metastatic breast cancer path that I have chosen.

When I write my thoughts and experience with you, they are raw and fresh on my mind.

This is my perfect place to process and work on my mind and attitude.

Sending well wishes and health to us all.

 

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

 

 

 

 

 

Hakuna Mata

 

 

Going in for surgery on your brain during a lockdown – on the one hand, yes, I am so very grateful to be having the treatment. On the other hand, I was scared, terrified.

 

After the past three months, I have been slowly starting edge my way back into the wild.

 

At times,  I am nervous and scared going into these repeat scans.

Today I will have a repeat MRI to check on the progress and swelling of my brain.

I will also have a full PET scan on my body. It has been six months since the last.

 

From my original diagnosis in 2016, I have been considered a stage four metastatic breast cancer patient having cancer in several areas of my body.

 

After my original chemo treatment and continued medication, my body scan has shown no change. NEAD (no evidence of active disease).

 

Yes, a feat on its own. And a reason to celebrate as a triple-positive breast cancer patient Herceptin has worked for me.

 

If you know me well, I hesitate to talk about this subject, let alone write about it and throwing it out in the universe.

 

Maybe you are out of the loop.

 

I had a craniotomy on June 3, 2020, to remove one growing tumor.

 

Honestly, the shit show scares me more than ever while awaiting scan results.

I feel that I am in “the” right place, both physically and mentally.

 

But I can’t stay in a safe bubble forever.

 

It is time once again and take the plunge and face the reality of metastatic breast cancer.

 

Scanxiety doesn’t serve me, so I’m once again releasing that energy.

 

It is a day to day and scan to scan learning.

 

I am accepting whatever will eventually show up again. Because the truth is that is what happens with metastatic disease.

 

Metastatic breast cancer remains without a cure. Many patients live beyond their diagnosis as I have and will continue for many years.

 

I am not able to control what is in my body.

But I can choose and control how I feel about it.

I will continue to serve myself and my heart.

I will not obsess about what I can not control.

Don’t worry, just be happy.

 

There are two sides

Processed with VSCO with fn16 preset

 

 

So often, I hear, “you look great.” It is such a double-edged sword.

 

I do not want to be defined by my disease.

 

We all live through our lives with not being just one thing.

 

Everyone has two sides, but both sides make up who you are. 

You can allow both sides to have a place in your life.

 

I’ve chosen to use the traumas as lessons to help or aid in becoming a better version of myself.

 

Cancer treatment and weight gain

 

Yes. Weight gain does take place during cancer treatment. Pharmaceutical treatment is always one of the culprits. Add other issues during a world panromantic. How many comfort foods have you prepared and enjoyed since March?

 

I’ve stopped baking the treats and fattening meals.  Yes, I eat it.  I just make sure I am making less fattening choices.

 

As I notice the looks or stares from people who have no idea why I am sporting a mohawk and scar on my head, I admit its best for my thoughts to quickly move forward.

 

It makes me giggle a little when I remember my “moon face” and the COVID mask that I wear.

 

No wonder it is both kids and adults.

 

If you haven’t had this experience, let me explain a bit more about a cancer patient’s appearance like mine.

 

Facial swelling, also often referred to as moon face, sometimes occurs while taking steroids like dexamethasone. It is one of the common side effects of prednisone.  A moon face is a medical sign when a rounded appearance on the sides of your face.

 

I will add that the swelling is also in my neck.

 

You may have heard of steroid rage.  

 

No, I am not experiencing anything like it.

 

I will mention, the internal buffer that I have had regarding my thoughts and words disappeared—my poor sweet husband. Of course, Steve is the safest person in my life, and the first person my buffer comes off with.   

 

Honestly, I like this version of myself. Because I have so much to learn from myself during my natural outbursts’.

 

When asking Steve about the situation, he was getting in trouble all the time. That was my red flag for sure.

 

Honestly, at about week two of my “naughty.” Lack of a better word. I at least knew to “stay in my lane” and tone things down. My experience was similar to a bad case of PMS.  

 

I am so grateful to recognize these “types” of things in myself. I know I am blessed to deal with things, learn from them, and grow.

 

Brain surgery and radiation.

 

June 3, 2020, one operative tumor was removed craniotomy.

 

I completed five-pointed radiation zaps on the two nonoperative tumors in early August and scheduled with one day in-between each.

 

Stereotactic radiosurgery (SRS) is a non-surgical radiation therapy used to treat functional abnormalities and small tumors of the brain. It can deliver precisely-targeted radiation in fewer high-dose treatments than traditional therapy, which can help preserve healthy tissue.

 

What I’ve learned physically and emotionally during the last five months of my MBC journey.

 

I still quickly forget that I have a terminal disease.

 

Having brain surgery and brain radiation is similar to having a brain injury.

You adjust as you heal.  

 

I was reminded again how healthy my body and mind are.  

 

Dexamethasone 

 

The struggle is real, and the face is affected. “moon face.”

 

Lessons learned from brain swelling.

 

The steroid dexamethasone was introduced to me in February 2020. It has been such an experience to go through this challenging COVID year.  

 

Laughing in hindsight, I can see the humor in my experience.

 

Steve and I learned a lot during the last several months while I have been emotionally and mentally affected while it has been necessary to have this steroid in my body.

 

It is the goal to not have any brain swelling from the invasive cancer treatment.  

 

At this time, I still have swelling and additional issues if we don’t treat it. 

 

My “normal” internal buffer that I have had regarding my thoughts and words tend to disappear while taking this steroid. My poor sweet husband. I must remember to be extra patient with him in this situation. Of course, he is the safest person in my life, and so the first person that my buffer comes off with. Honestly, I like this version of myself. I learn so much from myself during my not so buffered experience of my thoughts and mind.

When asking Steve about the situation, he was getting in trouble all the time. That was my red flag for sure.

Honestly, week two of my “naughty.” Lack of a better word. I at least knew to “stay in my lane” and tone things down. My experience was similar to a bad case of PMS. And Steve brought this to my attention.

I am so grateful to recognize these “types” of things in myself. I know I am blessed to deal with things, learn from them, and grow.

Dexamethasone has helped me find my true self during a very mentally tricky time.

 

As of today, moon-face and weight gain are such a part of my life.

Every day I am more accepting of this side effect. 

It is necessary for many cancer patients just like me.

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.