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.

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

COVID19/CHEMO

The oncology treatment clinic is always a space in time when thoughts catch up to me.

My goal always to live in the moment, and each treatment reminds me of the reality of my prognosis.

My experience of social distancing during COVID19 can be similar to sitting in a chemotherapy room.

You look around a room and wonder who will be next.

Which patient will be missing from the treatment room?

I walked into the building and interrogated with COVID19 questions before I was allowed to head to the second floor for my actual treatment.

The overcrowded reception room empty.

They called my name, and I entered the infusion room. There are too many chemo chairs compared to the four of us who are receiving treatment today.

Four patient’s at a time and a handful of the usual healthcare professionals.

The nurses were all wearing their surgical masks. I couldn’t help but notice that the elderly cancer patients were not.

Next week I am scheduled for a pet scan to help make decisions regarding treating my brain tumors.

I’ll update you again at that time.

I am sending healthy and joyful thoughts to each of you.

Shari