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.

 

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

 

 

 

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

Beyond Frustration

When I am frustrated with life, my negative talk, meaning the voice in my head that can be self-deprecating, is yelling at me.

Can you relate?

Frustration can lead to growth.

Each day I work on remembering that we grow through life.

It all depends on perspective.

I admit there are moments that I am cursing under my breath, and I regress.

I did have one of those days recently and found myself pissed off at the world.

I was so uncomfortable in that mood, and it took several hours for me to come to the understanding of what exactly had set me off.

It was a typical day for Steve and me. We were driving through town, noticing the new building and changes that were taking place right under our noses and so quickly.

I noticed I was getting aggravated, and I had no idea why. I didn’t like the gloomy outlook that I was sitting in.

As I contemplated my mood and explored my feelings, I began to see a glimpse of the cause.

I wasn’t sure if it was something I wanted to share or could speak out loud. I was vulnerable and was worried that I would share my dark cloud by discussing it.

Later that evening, when we were talking about trivial things, I got my nerve up.

I told Steve how I ended up so angry and wasn’t sure why.

In hindsight, it is so easy for me to see the “why.”

Those emotional, scary cancer thoughts had snuck up on me once again.

You might know the thoughts.

The thoughts that show up most often as you contemplate another test.

‘Will I be here when”?

My outlook on life has changed over the years.

My perspective began to evolve before my diagnosis, and thank goodness it had.

And that is how I deal with frustration.

I examine it while crossing my fingers that, in the end, I will grow from it.

I’ve learned to give myself grace.

And that in its self is growth.

Boost of Confidence

. . . . . . . . . .  . . . . . . . . . .  . . . . . . . . . .  

How do you see yourself?

How confident are you?

I love connecting with people and hearing their stories.

I recently read “In Pieces” by Sally Fields.

Ok, in all honesty, I listened to it on @Audible.

You most likely are familiar with this famous actress, and this is her memoir.

I’m not going to give you the juicy details, but I do highly recommend you check it out.

I understood myself a little better while connecting with Sally through her own experience in life.

Our own story as a child can and will innocently create the perspective we have of who we are.

How I viewed or thought of myself was developed from the following,

Unwanted because I was placed for adoption

Not Loveable because I was a mistake.

Deformed and lucky to be adopted into a family that can afford orthodontia.

Because I am too short, it must be the reason he cheated.

Crazy, yes, but I had decided it was true.

Then at 45 years old, I learned that there was not an ounce of truth to any of these beliefs I’d developed over the years.

I’ve been grateful every day since because before that day because up until that day, I did not know who I was.

Long story short, you can move past your self-doubt and limiting beliefs. And you can become a more confident individual.

……………………..

Having a rough day? Don’t worry, most of us do!

I am and will always be a work in progress and there are moments that I forget who I am.  And I do realize that I am not the only person who struggles with my self-confidence.

I’ve listed a few things that often help me.

Remind yourself that it will pass and give yourself a mood-boosting time out.

Are you a Grey’s Anatomy fan?

Have a Meredith and Christina Yang dance party.

Think about Wonder Woman. What is your power pose?

Stand up straight, roll your shoulders back, and lift your chin.

Remember, every day is a new day.

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