Another Surgery Down! Now, Recovering In So Many Ways (Post Surgery No.6)

Since my diagnosis in 2014, I’ve had some type of brain surgery…every… single… year with the exception of 2018. So, in 2019 just to make up for it, I guess, I had to get 2 “surgery notches” under my belt!

I’m now one week out from my 6th brain surgery. It was something termed a “Burrhole Craniotomy”. In real-people speak, I basically had a GPS-guided needle inserted into my skull to drain fluid from a lesion/cyst that sat in my brain for years caused by the insane amount of radiation I received between 2014 (initial diagnosis) and 2015 (recurrence). When I met with my neurosurgeon’s N.P. before he came in to discuss our options, I basically ticked-off every box for issues related to fluid in my brain. Yes, including being “ticked off” at everyone and everything. Yet, she asked politely, “Are you feeling more irritable?”. My husband had a good laugh at that one. We both answered with an emphatic “YES!”

Prior to the surgery, I became extremely angry and depressed. I never really had those feelings for such an extensive period without them being caused by some horrid med… ahem, Keppra, Dexamethasone. Nope. This time it was all me. Facing a 6th brain surgery, admittedly, gives me some leeway to feel so utterly miserable. I am only human after all.

I know full-well going to that “dark place” isn’t just damaging to my mental health, it makes me physically weak. I need to go into surgery healthy in all aspects-physically, mentally, emotionally, spiritually, etc. Yet, I couldn’t pull myself out of the darkness.

The one thing I was 100% confident in was my neurosurgeon. If I ever turn this into a book, I will absolutely name him. However, for now we will remain anonymous. I know for sure he truly lives and breathes by the Hippocratic Oath, most especially

  • the duty to “do the least harm”; and,
  • “there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

Fortunately, I’ve made wonderful connections within the brain cancer community since my diagnosis. I have no doubt some of those connections are why I’m still here. They’ve led me into the exam rooms of some of the most impressive physicians in this country. My neurosurgeon is one of those people.

So, despite all my neurological issues, including losing total use of my left hand, falling on the daily, constantly losing my memory or at least feeling such brain fog I literally forgot the year, I knew my doc would get me through this. And he did.

Without getting into too much detail, I had consulted with another surgeon first. Wait, I actually wrote a whole post about that experience. Oh well… “blame brain cancer brain”Totally off topic – Can we stop saying, “oops! Must be Mommy brain!”? No, like I’m literally missing a part of my brain that was infected with cancer – twice. Then, it got lots and lots of radiation beamed into it. We just forget shit! Mommies, don’t hate me, please.)

So, that other surgeon had proposed a much more invasive surgery. I was incredibly uncomfortable with his plan. I was very open that I was going for another consult at another hospital. The hospitals in NYC seem to compete with one another like spoiled school girls. I’m not too too concerned with that B.S. I’m trusting my brain with whoever is going to stick by that whole “least harm” idea.

My surgeon utilized the least invasive means possible, I only spent one night in the hospital. My left hand is working again. I’m walking better. The brain fog is still around, but I’ve been on Percocet the last few days. I’m not quite so “irritable “. My husband is very happy about that! I’ve got another surgery notch under my belt. Thankfully, I’m finding myself again too.

Living Through A Pandemic, But There’s Enough Talk About That… But I Kinda Gotta Talk About It

I’ll admit, despite being a highly educated person, I had never even heard the word “pandemic” prior to a few months ago. Since none of us can remember what day and/or date it is at this point, I can’t even pinpoint when I first heard it.

Living right outside of Manhattan and with all of my doctors in NYC, these last few months have been indescribable. I run the gamut of emotions on the daily. One minute I’m angry at everything. The next, I’m weeping seeing photos of my doctors on the “frontline” because, Yes, it is a war zone here. If you are one of those, “This is all a hoax” or “We have the right to allow ourselves to die” types, stop reading now. I’m not sorry for refusing to tolerate ignorance. Hearing that kind of talk then brings me back to my manic anger.

I feel frustrated and helpless that I cannot do a thing to change the state of affairs here, when hospital staff have to risk their lives and/or the lives of their families working in hospitals literally full of virus patients. I cannot handle the sight of tents set up in Central Park and other areas in the City, filled with patients because the hospitals are too overcrowded by this pandemic. I cannot handle knowing the millions upon millions of dollars that stream into the hospitals in which I treat. Yet, healthcare workers have to find their own PPE (Personal Protective Equipment) to keep themselves safe. We are applauding the fact that only a few hundred are dying these days, down from 700/800 people per day… per day! Yet, we don’t even know the actual numbers because, well, I’ll keep the politics to myself.

So, as of today, there’s been over 75,000 deaths in the U.S. and over 20,000 in New York alone. Well, that we know of at least. The 9/11 attacks killed 2,753 people at the site of the World Trade Center. Those who have been taken by this virus are mothers, fathers, daughters, sons, sisters, brothers, etc. They include nurses, doctors, and other hospital staff. Morgues and funeral homes are filled to capacity. So, refrigerated tractor trailers sit outside of the hospitals to load in the bodies. One Brooklyn funeral home was even recently found to be simply keeping bodies on ice in rented trucks due to overcapacity. The owner was quoted, “I ran out of space. Bodies are coming out of our ears.” These patients died an isolated, what’s been described as an extremely painful, horrific death. Then they’re just loaded into trucks, their family and friends unable to honor them with a proper funeral/burial.

One Jewish woman in an Assisted Care Facility, also in Brooklyn, was even buried in a Catholic cemetery despite already having a paid family plot in obviously a Jewish cemetery. Oh, and her estate was charged nearly $15,000 for her “Catholic funeral” that never even took place!

I truly feel like I’m living through the worst Sci-Fi horror movie, ever. As a cancer patient, I’m accustomed to “quarantine life”. However, the few times I’ve actually left my apartment, the sight of (mostly) everyone in masks, wearing surgical latex gloves, avoiding getting too close to strangers on the sidewalk, literally empty Manhattan streets… It really feels like the apocalypse has come and it’s not ending any time soon.

While I was in acute, in-patient rehab at NYU Langone’s Rusk Institute, there were rumblings of the virus spreading. There were very varied opinions at that time in early February. Some nurses and staff were extremely concerned, while others believed like so many of us it would just be like a bad flu. When I was released in mid-February, feeling so strong and energized, ready to get back to my outpatient PT & OT routine, no one advised me to be safe, wear a mask, limit my contact with others. That’s not the fault of the hospital staff. In my humble opinion, they were being kept in the dark, again like so many of us.

Once I was finally released, I had now undergone my 7th brain surgery and had a shunt placed into my brain that drained fluid into my intestinal area. I had spent a full week in ICU plus 2.5 weeks at Rusk. I was obviously immune-compromised, yet I went around NYC to all my follow-ups and to all the appointments I had missed while hospitalized. I didn’t wear a mask. I didn’t practice social-distancing, which is another new term I’ve learned. In fact, I rode an elevator with music-industry legend, Clive Davis, and his entourage. I was continuously told, the virus would not be as bad as some were saying. So, I didn’t worry. I mean, in less than six years I have REALLY been through some ish! How could this be any worse? Oh how wrong I was – how deeply deeply wrong I was. (Cont. on Page 2)

The Real Superhero Film

I’m very excited about a project I’ve been working on for a few months now. Drumroll please…. I’m gonna be in a movie!

Okay, very weird tidbit about me – I was actually an extra in an “after school special” type movie back in high school. It starred some pretty famous people, but they probably would rather forget about it. After all, it was pretty cheesy.

However, this film is going to be truly amazing. I hope that anyone reading my lil blog here will follow our progress on social media and our website, which are all below.

The Real Superhero Film” is a feature-length documentary film that explores human stories of cancer survivors, as well as those who dedicate their lives and careers to helping cancer patients. They include esteemed physicians, nurses, nurse practitioners, and others.

The film will include a variety of intimate interviews, as well as casual and deep conversations about cancer from people of all ages, nationalities and walks of life. Naturally, the theme will be how these particular cancer survivors discovered their “superpowers”.

“Turn your pain into purpose”

A recurring theme in the film

Additionally, experts and medical professionals will discuss their work using their own “superpowers” to help enrich and save cancer patients’ lives.

****Super Bianca!****

Ultimately, the film will show that there are real superheroes all around us!

AND this all came about just by a chance meeting (I’d call it fate) during a physical therapy gym class and my very rude habit of eavesdropping on strangers.

There I was, riding along on the stationary bike one day, and all I can hear is this woman’s Eastern European accent. I looked at this woman, who I just knew was a cancer sista’ in full-on pink, talking with such intense passion about ALL she was doing! Well, she was: filming a movie here in the States and Bulgaria about cancer survivors; she is an extremely famous actress in Bulgaria and even hosted the Bulgarian version of “The Bachelor”; she was working with our hospital to get a PET Scan machine donated to Bulgaria; and, heading a team in a walk for breast cancer. This was a Bulgarian girl-boss and I immediately loved her!

Now, months later we’ve been workin’ it to get this film going, along with the production crew.

The director/co-creator is an award-winning, veteran filmmaker. He has created multiple documentaries, one in particular that aired on PBS. He has also made several short films that have won acclaim at top film festivals worldwide.

The executive producer has one heck of a resume/C.V. too, varying from risk management at Deloitte & Touche, to running her own consulting firm while also embracing her passion for art and design.

Our P.R. and marketing representative is out of the esteemed Dale Carnegie Agency.

We have over 20 participants in both the NYC Metro area and several in Bulgaria, including Bianca’s mother. Very little known fact: The entire country of Bulgaria has only 2, Yes 2, PET Scan machines. Hence, Bianca’s mother waited nearly 6 months for a PET Scan to show she was suffering from lung cancer! There are also few hospitals treating cancer patients and some must travel hours and hours from very remote villages just for treatment.

This is certainly a one-of-a-kind film and I’m honored to be a part of it.

Keep on Fighting!

The Real Superhero Film” Information:

Website: http://www.therealsuperherofilm.com

Instagram: @therealsuperherofilm

Twitter: @therealsuperhe1

Also, a HUGE thank you to NYU Langone Hospital and Mt. Sinai Hospital in New York City, who have provided an immense amount of support.