An Ironic Twist to A Post I Began in April 2020, Believing I Was Almost 5-Years “Cancer Free”

Irony seems to be a continuous theme in my Posts these days.

On April 11, 2020, I published PART ONE of a Post reflecting back and revamping a previous Post: “The Things I Wish I Were Told When I Was Diagnosed With Cancer“. Originally, I expected to just write a single Post. However, I never got to complete Part Two.

Now, in October my life has YET again gone into full-chaos mode. Hence, why I have yet to write Part Two of my Post.

‘THE WHEELS ON THE BUS GO ROUND AND ROUND”… AND SO DOES CANCER!

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Remember that kid’s song , “The Wheels on the Bus Go Round and Round”?

If not, the lyrics are pretty simple:

Lyrics:

“The wheels on the bus go round and round
Round and round, round and round
The wheels on the bus go round and round
All through the town…

The doors on the bus go open and shut
Open and shut
Open and shut
The doors on the bus go open and shut
All through the town…

The wheels on the bus go round and round
Round and round, round and round
The wheels on the bus go round and round
All through the town”

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Well, ya know what else “goes round and round”?

CANCER!

And it seems this series of Posts will as well…

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My Past Post: “A Look Back On The Things I Wish I Were Told When I Was Diagnosed With Cancer”– PART ONE

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PART ONE CAN BE READ HERE:

A Look Back On “The Things I Wish I Were Told When I Was Diagnosed With Cancer” – PART ONE –

MY INITIAL POST CAN BE READ HERE:

https://braincancerbabe.com/2016/04/11/the-things-i-wish-i-were-told-when-i-was-diagnosed-with-cancer/

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Five-Year Milestone

Back in April, when I wrote PART ONE I was just reaching that “supposed” critical 5-year “cancer-free” milestone.

It is a milestone. Don’t get me wrong! Living for over 6 years after being diagnosed with a Grade III brain tumor is sadly quite rare based on current, generalized statistics. Since my recurrence happened just about one year after the initial diagnosis, it is even more rare that I am still here!

However, just because I was close to reaching that 5-year milestone, it did NOT mean cancer ever remained in my virtual “rear view mirror”.

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Elephants and Tea

I discussed this concept a bit in a recent Article published by Elephants and Tea,:

https://elephantsandtea.com/patients/remission-a-new-perspective/?utm_source=newsletter&utm_medium=email&utm_campaign=patients-30&utm_content=blog

In that Article, I discussed:

• How I personally hate the word “remission”;
• That there is no “cure” for cancer;
• How cancer will ALWAYS be a part of my life despite being technically five-years cancer free

Nevertheless, being just shy of the 5-year mark I thought it was important to update and/or “revamp” my previous Post: “The Things I Wish I Were Told When I Was Diagnosed With Cancer“, which essentially copied an Article authored by Jeff Tomczek.

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Jeff Tomczek’s Article – An incredible “guide” for newly diagnosed cancer patients.

The original Article I used as my template was published in 2012 by a writer, Jeff Tomczek, who was diagnosed at 27 with leukemia. I believe Jeff’s Article is an incredible “guide” for newly diagnosed cancer patients.

Jeff’s original Article is here:

https://www.huffpost.com/entry/cancer-advice_b_1628266

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April 2020 & Looking Back on Jeff’s Article. Its Lessons, Guidance & Advice 6+ Years From My Initial Diagnosis And Nearly 5 Years “Cancer Free” – PART ONE

Naturally, as I approached that pivotal 5-year mark, I wanted to look back at my earlier thoughts on my life with cancer as a Young Adult.

So, I wrote PART ONE in April of 2020 discussing Jeff’s lessons and adding in several of my own. However, there needed to be at least two parts because the Post was getting too long. Also, there is such amazing guidance in Jeff’s Article. Then I added my “two cents” into it all.

Again, I wrote the Post believing I was “cancer free”. Well it turns out that while there was no evidence of cancer in my brain confirmed by a needle biopsy and later a PET Scan…

I WAS NOT CANCER FREE AT ALL!

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None of the advice in my Post would have differed, had I known cancer was once again attacking my body, but come on!

Can a girl get a break?

Nope.

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Utter Chaos Ensues

There will be future Posts about the insanity I suffered from April until now (October 2020) but briefly:

SURGERY NO. 8

• In April I underwent a relatively uncomplicated surgery to remove vascular clips used back in 2016 during what was my most complex surgery (12 +hours involving removal of my titanium plate, clearing out infected areas of my brain caused by all the radiation PLUS taking a graft from my abdomen and placing a skin flap on about 1/3 of my scalp that was infected and the skin was no longer viable)
• Those clips were suddenly trying to pierce through my skin near my right ear
• Thus, my incredible plastic surgeon had to once again operate to remove the clips

DECLINE

• Immediately after a pretty simple surgery, I neurologically declined BIG TIME, as in – I could not walk even using my cane; I lost use of my left hand, again, I suffered horrible migraines, etc.
• Additionally, I began to suffer facial paralysis and nerve issues/pain all along the right side of my face
• I wound up in the UCC (the ER of a cancer hospital). After a full panel of tests and an overnight stay, I left with no answers as to what was going on and why this was happening
• I KNEW IT WAS NOT GOOD WHATEVER IT WAS

THE MRI & WHAT WAS SUPPOSED TO BE A STANDARD POST-OP APPOINTMENT

• In September I underwent a brain MRI, which scans the whole head and neck
• Now that the metal clips were gone the scans showed the area behind where the clips had been
• A major problem was noted! Yet, it was missed by several doctors
• At a regular post-op appointment with my plastic surgeon, only a few weeks after the MRI, my surgeon immediately rushed me to a Head and Neck surgeon. The surgical area near my ear remained very swollen and I just happened to feel 2 lumps on the right side of my neck.
• I saw the Head and Neck surgeon, who then immediately rushed me to biopsy!

At that point, I had yet to connect the dots. It all happened within the matter of a few hours! Plus, my neurosurgeon had confirmed in December 2019 there was no evidence of cancer in my brain. So, I was completely and utterly shocked by what I learned…

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Although there are some very limited, reported cases, my brain tumor is not supposed to metastasize to the glands or lymph nodes.

Yet, that’s exactly what happened to me!

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Here We Go Again! Round and Round I Go, Just Like That F—ING Bus!

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I am still in shock and almost cannot find the words that I am not only suffering my third bout of cancer in less than 6.5 years at 40 years-old, BUT that it’s also occurring in one of the rarest possible ways!

SURGERY NO. 9 WITH A SPRINKLE OF RARE METATASTIC CANCER

I went through a horrific 14+ hour surgery on October 9th. Just my 9th surgery since my initial diagnosis in 2014! 😳

However, I am home, out of the hospital, my surgeons were able to remove all the tumors plus reconstruct my face.

I could just go as myself to any Halloween costume party because I look like the victim from a slasher movie.

GRATEFUL TO BE ALIVE

Despite all the pain, pure chaos, fear and looking like the Elephant Man, I really feel grateful for merely being alive right now!

Recovery will take a lot of time and I’m definitely still in pain.

Yet, I’m miraculously still here!

So, PART TWO of “The Things I Wish I Were Told When I Was Diagnosed With Cancer” will just have to wait. 🤷🏻‍♀️