There are two sides

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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.

The game you play

Steve and I often refer to the treatment of stage 4 cancer as whack-a-mole.

It is constant and rarely takes much of a break.

My almost four years since diagnosis has been smooth sailing for most of the time.⁠

I am one of the lucky ones, and I have outlived my prognosis.
.
The MRI showed that the three spots have increased in size since the last scan, which was approximately a month ago.⁠

Yes

I am happy to report that steroids have helped with the headaches and given me a fantastic boost of energy and mental clarity.

No

Taking the steroids did not reduce the edema or the growth of the three lesions.⁠

We are in the same place that we were last month when we first met with the neurologist.

These three little buggers have been around since 2017.

First, we have already treated the three spots with radiation.

Stereotactic treatment quieted the lesions down for a year. But most likely also has caused some brain necrosis. Thirty percent of all patients treated with any radiation in their body ends up with disease in the area. And is referred to as necrosis.

So now what?

We have been crossing off possibilities.

And I am ok with that. This is what it looks like when you have metastatic breast cancer.

Doing the steroids and repeat scan was one way of waiting before surgical removal of any of the lesions.⁠

We will speak with the neurologist soon.

In the meantime, a new PET scan will take place to make sure that the rest of my body is still considered NEAD.

I can be thankful for Herceptin helping to keep my lungs, liver, and bones in this state.

As I write this update, we are all dealing with the desperate situation of the coronavirus.

I send my love to each of you.

My medical team is growing

**********************************************************

I had my first appointment with a neurosurgeon this past week.

Steve and I were impressed and happy with who my oncologist recommended.

I prefer to have my doctors be blunt and to the point.

And this one did not disappoint.

 

He had already seen my MRI that shows the three tumor areas. He also had my medical records showing that I have been in treatment for almost four years.

The first thing out of his mouth was; 

“Well, you look a whole lot better than what I expected. I thought you would look sick”.  

and second

“You have outlived your prognosis.”

Then he mentioned that he hoped that did not offend me, but he is blunt.

It was strange to hear a doctor mention it. I was thrilled that he did.

 

He said he was looking at edema from the prior radiation as well as the three tumors. 

After a long conversation, which included learning new things, the next step will be three weeks of Dexamethason to reduce the water/edema. Hopefully, this will help with the headaches.

I will have a repeat MRI, and a follow up with the neurosurgeon.

I was happy to hear that he was confident that two of the spots are operatable. The third may be as well, but he would have to study the area more to determine if it would be safe.

 

Depending on the outcome of the March MRI, we will have more information to make plans and next steps.

A biopsy of at least one of the tumors will most likely be needed to determine if my actual treatment protocol will need to be changed.

In a needle biopsy, he will drill a small hole into the skull, and a narrow, hollow needle is placed into the incision to extract a tiny portion of the tumor or tissue. A stereotactic biopsy uses 3-D imaging technology, as well as data from CT and MRI scans, to examine a tumor or a piece of the brain.

I have taken 2mg of Dexamethason before bed the last two nights.

I have to admit I enjoyed the energy that I had today. I feel like my old self. My stamina is impressive. Today was the first time since I can remember that my entire house is clean at the same time and I didn’t pay someone to make that happen.

***********************************

Health Update December 2019

 

It was necessary to complete some extra scans this go around before I felt confident in sharing an update.⁠

First an update from my PET and CT scans.

I am thankful to say that I am still NEAD (No evidence of active disease) from my chest to the top of my thighs. I have remained in a sort of maintenance and rescan mode for almost 3 years. Original cancer in my lungs, bones, and liver have all tiny or nonexistent on a PET scan. The chemotherapy, Herceptin is serving me very well. On December 17th, I will receive my 49th infusion.

Second my last brain MRI

We did have some stress over the past 6 months due to a possible progression in my brain.

I have previously had stereotactic surgery treatment to the three spots that had shown up in 2017.

The spots have been stable in repeat MRI scans. And in a scan this past April, there showed some enlargement of one of the three lesions.

It was noted, and we moved on. 

In August, the repeat scan then showed enlargement of all 3 original lesions. 

My radiation oncologist, Dr. S had explained that many factors are looked at when interpreting an MRI scan. Yes, what we are looking at could be a progression, or it might be that my brain is “angry,” and it is reacting from the initial radiation treatments.

I still did not understand the fact that there had been minimal edema or change since I had completed the first radiation treatment over a year ago. We were at a loss for why the sudden change unless it really was progression.

At this point, it was decided that we would do nothing at this time and rescan in 3 months again. Steve and I had plans to travel to Europe during that time. I’m glad that the trip was planned in the middle of that time. I did my best to not dwell on the unknown. Steven and I did not talk about the unknown.

I had yet another MRI on November 12, 2019.

All three spots had more than doubled in size. The thing I kept remembering that even with the growth, the lesions were still being measured in millimeters.

When my radiation oncologist called with the news, he was a very manner of fact and went over a few different options.

He offered to give me a referral to a neurologist. This was the worst possibility being a craniotomy to remove whichever lesion would be the easiest to simply remove and biopsy to see if the growth was indeed cancer. 

I remember the part when he mentioned to see if the biopsy was cancer and if it was that we would consider all three the same.

Now, remember, I am a metastatic patient. I’ve had cancer in all the typical spots that disease shows up when diagnosed with breast cancer.

The whole conversation was so confusing and difficult to hear. I remember standing in the aisle of the craft store, and suddenly I was trying to remember what I had walked into the store to buy. Then I found my mind finding its way back to listening to his voice. I took a large breath and tried to focus in on the information.

I chose the most straightforward option during the call. I asked for Dr. S to call and speak with the person who had translated the scan to get any extra information from this MRI, if possible. He also mentioned I could have a Spectroscopy Fusion. I had no idea what he was even talking about. But I did know that for me, I needed to breath and keep things as simple as possible.

When Dr. W called that evening, he was so kind. He mentioned that he thought it would be a good idea to have my PET CT instead of waiting. It had been just 4 months since the last, and at that time, I was NEAD. 

He felt we needed to know if that had changed. If there were any kind of progression in my body, we would need to change my total chemotherapy protocol. Dr. W didn’t elaborate on what that would like. He did not need to. 

Dr. W had already sent the orders in for a PET CT as well as a Spectroscopy MRI, which was the select MRI scan that Dr. S had mentioned. 

Dr. W also mentioned that if my PET CT showed no progression that we could start specific chemotherapy, which could help with brain lesions. He let me know that most of his patients don’t feel nauseous or lose their hair from this pill form of chemo. I would, however, most likely experience some new side effects from the chemo.

The PET CT was scheduled a week later, the day before Thanksgiving 2019. I have to admit I was extra nervous going into the test that day. I’ll never forget biting Steve’s head off regarding something very ridiculous. That has always been the telltale sign of my emotional state.

I geared up for the fact that I might have to wait until after the holiday for the results. But low and behold, I did get a call early that evening with the news that I remained NEAD. A layer of nerves was diminished as we enjoyed Thanksgiving with family.

On another note, I chose not to tell friends and family about the scans or the fact that there may be cause to worry about the lesions progressing in my brain.

I have found it most challenging to have several well-meaning people bring up the questions before having something to tell them. For myself, the added reminders of uncertainty are not necessarily helpful. So numb was the word this go around.

The Monday after the holiday weekend was the day I had the Spectroscopy MRI. The procedure was very similar to an MRI with contrast. This test took a bit longer. 

An MR spectroscopy compares the chemical composition of healthy brain tissue with abnormal tumor tissue. The chemicals determine what the makeup of the tumor or affected area is.

The results showed three enhancing lesions and are on the left side of my brain. No chemicals were indicating that is is an active tumor. 

The test showed again an increase in the size of the 3 areas. The only answer they mentioned is the prior radiation treatment is causing the edema. What they are seeing is necrosis and/or pseudoprogression and is most likely the source of the increase in the size. They recommend continued MRI follow-ups. 

I was also offered 4-6 weeks of steroid treatment to reduce the swelling. I chose not to be on steroids during the Christmas holiday. Really my choice is not steroid treatment at all.

The edema may take care of itself over time. However, it is just as likely that the issues continue and could cause issues with otherwise healthy brain tissue.

Time will tell. I am not having any side effects from the edema at this time. We will again repeat the MRI testing in 6-8 weeks.