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.

⁠ ⁠ ⁠

Sixty-Six Years of Marriage

  William Arthur Ward wrote, Feeling GRATITUDE and NOT expressing it is like wrapping a present and not giving it! No matter who you are, every single person has something to be grateful for. By consistently practicing gratitude, it shifts the entire focus of life. Stress dissipates, and a calmness washes over our being. I … Continue reading “Sixty-Six Years of Marriage”

 

William Arthur Ward wrote,

Feeling GRATITUDE and NOT expressing it is like wrapping a present and not giving it!

No matter who you are, every single person has something to be grateful for.

By consistently practicing gratitude, it shifts the entire focus of life. Stress dissipates, and a calmness washes over our being.

I don’t know about you, but that sounds like a lovely place to be. The bliss of the miraculous life we have.

Sixty-Six years ago, these two love birds were married.

I am so grateful for my parents and my siblings as well.

I am fortunate to be the youngest daughter of Dell and JoAnn Tyler – I say that because I was adopted and became part of the family at age two.

Unfortunately, my mother passed away this past week. She was 85 years old. It thrills me to know that she is no longer in pain, and her mind once again is active, and she is full of life.

It is difficult to watch our parents age. For me, at this time as happy as I am that my mother has transitioned through life, I am equally as heartbroken for my father.

He has lost his sweat heart and is deeply grieving.

His own health is deteriorating quickly, and there is no way of knowing how long he will be here to answer my phone calls and hold my hand at chemo appointments.

Please keep my sweet father in your hearts and prayers.

These are lyrics from my mother’s favorite song.

Finding the words

“What should I say to someone who is dying?” “How do I come up with the words?”

I’ve been asked my opinion on these questions a lot recently. 

We will all get to face painful moments while sitting next to people who are dying. What CAN we say?  There are no magic words to keep loved ones here with us.

I read something very touching yesterday. Doctors told a mother that it was only a matter of time before her son, who had been battling a disease for a few years, would pass away. Soon thereafter, the boy asked his mother if he is dying.

As horrific as that situation would be she answered him honestly with, “yes, you are going to die”. Then she put on her brave face and told him these three loving phrases:

“You will not be alone.”

“You will not feel pain.”

“We will be ok.”

After her beautiful son passed and she was experiencing the excruciating pain, she repeated the three phrases to herself:

“You will not be alone.”

“You will not feel pain.”

“We will be okay.”

Saying this she could feel herself caught up in the arms of her child. As she continued to speak saying, “Now, I am not alone”, she could feel her son all around her. Then, the pain eased and she knew that she would be okay.

This is the beauty of these Three Magic Phrases. Dying people live on as long as we remember them, and repeating the phrases we have said to them is a straightforward and powerful connection. Our loved ones catch us, daily, and keep us going. And in turn, when it’s our time, I hold onto hope that we too will find comfort in these beautiful words.