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.

⁠ ⁠ ⁠

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

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.

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

But First, Dessert

I want to introduce you to my friend Denise.⁠ We have known each other since we were little girls.

Our mothers had been friends and were in a bowling league together. So that is how our friendship began.

Dance lessons and play dates were part of our early years. Time flys and our last memories together were decades ago when we would take ski lessons at Snowbird.

Life happens, and people grow apart. ⁠We lost touch with each other for many years.

But then unexpected circumstances brought us back together again.⁠

It started on Facebook about seven years ago when I reached out to her to say hello. Now that I think about it I’m not sure who requested the FB friendship.

We would comment on each other’s post once in a while, but that was all.

One day I read Denise’s FB status and I’ll never forget the feeling I had learning that Denise was diagnosed with Breast Cancer stage 3B.

I followed her breast cancer story on Facebook. She had a fierce battle and finally was in remission.

Shortly after my own metastatic breast cancer diagnosis, Denise posted about her cancer recurrence. Her breast cancer had spread to the bone, and she was now also a metastatic cancer patient.

Denise and I have leaned on each other for advice as we share a similar diagnosis.

How can it be that we both are the same age and are triple-positive metastatic breast cancer patients?

Both of our right breasts is where cancer had started.

We both had the BRACA test and neither is a carrier of the gene that can trigger breast cancer. Yet here we are with the same disease.

Denise came to visit some of her family here in Utah, and I was so appreciative of the time she and I had to spend with each other.

She shared childhood memories with me that I had not thought about for so many years.

We have both lost our mothers, and we shared those vulnerable emotions.

We went to dinner, and Denise said: “let’s have dessert first.” And so we did.

We could have talked for hours, but Denise had another plan.

I found myself taking her Tao Tao for a test drive in the dark. And of course, I fell and skinned my elbow.

Denise’s son had given her a Tao Tao electric bike, and we took turns riding it around the neighborhood.

It was getting late when we hugged and said goodbye. I couldn’t help but wonder if I would ever see Denise again.

But then we laughed knowing that someday we would.

 

METAvivor.org and Thrivers

Who is METAvivor.org

METAvivor exists to sustain hope for those living with stage 4 metastatic breast cancer (MBC). We are a volunteer-led, non-profit organization that funds vital research to help improve the longevity and quality of life for MBC patients. Passionately committed patients ourselves, we rally public attention to the urgent needs of the MBC community, help patients find strength through support and purpose and make every dollar count as we work with researchers to extend and improve quality of life for MBC patients.

Awareness
They bring attention to the specific issues of stage IV metastatic breast cancer and raise public awareness about the facts of the disease. Each year, 200,000 Americans are diagnosed with breast cancer. Six to ten percent of these diagnoses are metastatic, or stage IV, and approximately another 30% of breast cancer patients develop metastatic breast cancer. Therefore, we believe that at least 30% of the funds given to breast cancer organizations should be dedicated to metastatic breast cancer.

Support
METAvivor knows that a community of support is one of the most basic needs for anyone facing metastatic cancer. They began as a support group in Annapolis, Maryland, for local people living with metastatic breast cancer. They have evolved to focus primarily on public awareness and raising funds for metastatic breast cancer research, our original support program still remains intact as its own entity. We encourage people living with MBC to establish support programs in their own communities and recommend taking our Peer-to-Peer Support Group leader webinar class.

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