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

 

 

 

Fear is to be understood

 

Β 

π˜•π˜°π˜΅π˜©π˜ͺ𝘯𝘨 π˜ͺ𝘯 𝘭π˜ͺ𝘧𝘦 π˜ͺ𝘴 𝘡𝘰 𝘣𝘦 𝘧𝘦𝘒𝘳𝘦π˜₯ —

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.Β 

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 —Β 

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.Β 

 

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.Β Β 

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.Β  It is there for you to reach out and touch it.

Your personal journey to experiencing inner peace.

⁠ ⁠ ⁠

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

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.

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