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.

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.

⁠ ⁠ ⁠

Assisted Living & Salt & Vinegar Chips


⁠We snuck in a short visit with dad.

If you know my dad

First when he says jump,

you ask how high?

You don’t tell this man no.

My mother died last July. They had been married for 66 years.

My dad is 90 years old and yes his health went downhill especially after mom had passed.

Like most of us would be at 90 years old he is extremely stubborn. Well, he always has been.

He made a decision for himself to move into an assisted living home.

We are so grateful he made that decision.

Honestly, he doesn’t like his kids doing anything for him.

I think his choice to make the move was simply so that we weren’t all trying to take care of him. And we wouldn’t need to do everything for him.

He would rather pay someone else to do it.

He seems happier with this situation.

That being said he is obviously

So bored

The assisted living home has kept all of its residents free from the coronavirus to date.

They are serving all meals in their rooms.

They are practicing social distancing.

IF they leave to even go to a doctor’s appointment they are put in quarantine for 14 days.

Even at his age and in his health dad expects a lot from himself and his body.

When the weather allows he walks around the complex all day long.

We can drop off his favorite treats for him.

I talk to him almost every day and he will always say he doesn’t need anything.,

Then he will call and ask for diet coke and salt and vinegar chips.

So we make our run to get him what he has requested plus something extra that I know he likes.

I’ll call his cell when the goodies are in the building.

Then he always tells me I’ll be right there.

Don’t leave. Wait for a minute I’ll be right there.

Ten minutes later he appears from around the far corner of the property.

We were happy we had Fred with us.

He gave him some much-needed attention while we distanced ourselves from him.

I realized that Fred was more than likely the first breathing body that Dad had touched for how long?

A heartbeat and warm stinky breath

That thought is so sad for all the individuals who are isolated even with people so close by.

We stood outside with Dad in the sun and just enjoying the fresh air.

Knowing dad was happy to have a little company. And especially the love of a dog.

Then some lady appeared out of the blue. She told us we were breaking the rules and needed to leave.

So we did.

And we most likely will do it again.

 

Funeral Potatoes

 

I’ve always had an issue with leaving work at work.

It has been an exciting scenario working at the same company for the past six years.

Between our eight kids and having a full understanding of what takes place during our work hours has always provided us talking points.

I’m sure he has drawn tired of hearing the woes of my team of younger employees.

But I have to admit I think of these guys like my own. And as HR inappropriate as it can be, they have referred to me as “mom.” And I honestly don’t have an issue with that.

Steve and I love where we work, and they are family.

Getting official news of furlough was bound to happen due to the COVID situation.

And watching two of my team members hear that kind of news for the first time in their lives was unsettling.

I was not a part of the decision. I learned who would stay and who would go.

As a gesture to “help” or make things possibly less stressful for me because my employer knows fully about my current medical situation

I had a decision to make if I choose to stay on as a fulltime employee, I will need to take “take up some slack” because of having fewer members on our team. Or I can myself choose to furlough. And depending on my decision, this will affect another member of my team.

Whichever choice I make will determine if this young father of three and fulltime college student has a job or not.

It was not a good day.

And it got worse.

There were six people in the company that lost their jobs.

Why, of course, was the question. Coronavirus is the reason.

I will be on official furlough starting this next week.

A forced break that I know I need for all kinds of reasons.

However, Steve was one of the six people who lost their job this week.

Yes, indeed, there are hundreds of thousands of people who have lost their jobs because of Coronavirus.

It is a hard pill to swallow.

And yes, the situation sucks.

Steve and I are grateful it is us.

This next chapter will be new.

I wonder what we will have to discuss.

And to our friends who showed up at our house this afternoon with funeral potatoes in hand — we will always remember that moment.

A Gem of A Woman

 

It has taken me some time to accept the difficult things that I have learned regarding my biological family.

The circumstances and story I’ve learned are not at all what I was expecting when I decided to search for my birth mother.

It took several years for me to come to terms with my adoption. However, eventually, I did find peace in the knowledge that my biological mother had wished me dead from the time of my conception. You may think I’m being dramatic or exaggerating; however, I am not.

The only information that my sister Darlene was willing to share with me about our biological mother was that Pearl tried to use a coat hanger to abort me herself and end the pregnancy. The thought of this still makes me nauseous.

I tried to put this thought out of my mind by telling myself Darlene was trying to be hurtful and perhaps was jealous of the life I had led because of my fortunate adoption into a “normal” family if there is such a thing.

Darlene was fifteen years old when Pearl was pregnant with me. Oh, and I want to make sure to mention that that year was when Pearl abandoned her oldest daughter in Las Vegas, Nevada. It was 1963. That day was the last time Darlene ever saw her mother.

You might be wondering if I ever found Pearl and if we had a conversation.

The answer is yes. I had one phone conversation with my birth mom. Her words are etched into my soul like a knife to the gut.

The short conversation went something like this.

Hi, my name is Shari. I am trying to find out a few things about my medical history, and I am hoping to talk to you regarding my biological family.

Pearl said, Who is it you are trying to call?

I went on to tell her that I had been adopted by a family in Utah when I was two years old. I also mentioned that I was born at the LA County Hospital on October 17th, 1963.

Pearl told me that she had no idea who I wanted to talk to, but it wasn’t her.

I repeated myself by mentioning again my date of birth, that I had grown up in Utah since the age of two. I also said the names of her parents and even asked her about Darlene.

I will admit that I did throw her history in her face. I wanted her to be clear that she was the person I needed to find. And that she was the person who could answer my questions.

Pearl was forty years old when I was born. This conversation took place thirty-five years later. In my mind, I thought that she would have come to terms with the fact that she had given a child up. I also assumed that at seventy-five, she might be interested to know what my life had been like if nothing more than to have closure before her death.

But nothing could have been further from the truth.

Let’s get back to that conversation.

I told Pearl that I didn’t expect to have a relationship with her. I had a fantastic childhood, was married and had children of my own. I didn’t need anything from her besides information about my medical history.

There was silence on the other end of the phone,

and then Pearl said, “why would I want to talk to you; you are dead to me.”

That was it, and she hung up the phone.

Queue dramatic music.

I am not sharing this with you for you to feel sorry for me.

I share this with you because we each have something from our past. We have a choice to make; we can continue to have that chip on our shoulder to carry around with us for a lifetime. But if you are willing to deal with uncomfortable emotions, I recommend that you put your big girl pants on and dive right into the sludge. In the end, you will be better for it.

Now back to Pearl, the “Gem of a Woman” that carried me in her womb for nine months.

Later that day, I chose to write her a note. I apologized for catching her off guard and expecting a conversation with her. I included my address and phone number just in case she ever had a change of heart and wanted to get in touch.

I never heard from her, and she has since died.

Every year, International Peace Day rolls around on September 21st. For that reason, I chose peace to be the topic of September.

Picture your families, communities, colleagues, and schools. Think about the people who have something in their lives that they carry around from their past.

I’m sure you are aware of how often our issues and burdens affect us.

On that thought, remember how we all need to be accountable for what we carry into our relationships as well as how it not only affects us each day but everyone around us.

Do you have a chip on your shoulder because of something that happened to you?

I know that I had been carrying a large boulder.

Since my adopted mother passed away recently, I have been looking at photos from my past.

I was shocked as I carefully looked at pictures of myself from the age of 25-40 years old.

There was something about what I saw in my face that was different. It was a lost look. And was someone I didn’t recognize.

I thought about those photos for several days. And then it dawned on me.

I hadn’t realized how important it was for me to go through the ugliness and sadness of knowing the truth of “my beginning.”

I didn’t know who I was or what I wanted for so many years of my life. But through experiencing the hard journey, it led me to understand and believe in who I am today.

As difficult as it is to face our demons, once you do the work and get to the other side, similar to myself, you may not recognize yourself from the past.

And I am ok with that. Getting to the other side is exhilarating. Shari

 

 

 

The Case of The What-Ifs

 

 

Life will always have its ups and downs. How you deal with hardships and discouragement will always come down to your mindset. You can learn to change your mindset if you are willing to go through the personal growth necessary.

I recently had a young mother reach out to me. She has a similar breast cancer diagnosis and, cancer has spread to her brain. She, of course, is frightened and in panic mode.

She asked for my advice, wanting to know how to stop worrying about her situation.

I shared my experience with brain metastasis. There was relief in this woman’s voice when I explained my SRT treatment.

But her mind kept spinning, and I could tell she was still freaking out, and I was running out of suggestions to help calm her mind.

We can’t control our lives, and we certainly are unable to be in the driver’s seat when we experience a life-threatening disease.

We can do our best at finding the right doctor and treatments. Finding the necessary help, we may need for our children and families. Planning for our needs and wants regarding the end of life care.

But after all of that, there will always be a time when we have to let go.

Each person in their way and in their time will need to come to peace with their situation.

If you believe in a higher entity, this is the time put it in his/her hands.

Make the most of your life with those you love. Keep planning for the future as if you have all the time in the world.

Live to the fullest. Whatever it may be.  Wishing you the best, Shari