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

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

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

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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.

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