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)

“Losing Yourself”

“Losing Yourself”

It’s fitting I’d find this quote on Instagram today, because I do feel like I’m “losing myself”.

It’s partly due to losing connections with certain people who I’m supposed to consider family, as well as the loss of some friendships. These relationships were important to me in the past. As I noticed these people distancing themselves, I didn’t think much of it. I had a lot of other people supporting me.

As always, my fellow cancer “thrivers” understated the most. I mean, they had been in the trenches too. Even if we weren’t in that metaphorical “foxhole” at the same time, they know everything I go through, all the terrible things that run through my head way too often. They know that sometimes even replying to a text message is too much. They have perspective others in my life don’t and hopefully, for their sake, never will.

I could only wish my biggest complaint was that my nail polish chipped right after I left the salon. Or, that my order from Amazon came late.

So, No, it “literally” wasn’t the worst day of your life because say, your boss yelled at you. Yes, it sucks, and no one wants that. “Literally” the worst day of your life is when: you hear “you have cancer”; or you have to say “goodbye to a loved one; or that lump they found is not just cancer, but that you’ve actually been diagnosed with “terminal cancer” and you should start “making arrangements”. I’d say picking out my own coffin would “literally” be the worst day of my life.

I know you don’t have to suffer tragedy to empathize. I also know that people are people, and what seems like a bad day for them isn’t what a bad day for me is like. My bad days usually include, falling flat on my face just trying to get up from the toilet, or being so fatigued I can’t walk without my cane and someone or something next to me. The really bad days include trips to the ER, or so many doctors’ appointments back-to-back, I leave my apartment in the early morning and don’t get home until after dark. Of course, the really really bad days are spent in the hospital (and I’ve done my tour of so many a friend joked I should start a blog on the food service in each).

Anyway, back to “losing myself”. Throughout these last 5 1/2 years, I’ve remained consistently positive. Sure, I’ve had bad days, some bad weeks, but now it’s very, very different.

I’m heading into procedure Number 6 on Thursday.

Well, this being “Black Friday” seems quite fitting. My last post discussed how I’ve now become one of “those” people who hates the holidays. I was never that person. In fact, I couldn’t stand those people! Since my diagnosis in 2014, I’ve lost count of how many holidays I spent in the hospital, or separated from my husband because MY sickness caused problems with his family (ya know, when you get married you think, “oh, now we’re all going to be one big, happy family!” Ha. What a joke!)

Some fences have been mended. Once those relationships are fixed, then others suddenly crash and burn. People you thought were “family” are no such thing. Friends you thought would stick by you, don’t want to be around you because it’s “depressing”.

I do know ultimately that removing the toxic people from my life is better. However, that doesn’t mean it doesn’t hurt losing more and more relationships. I find myself becoming angry and bitter. It truly feels like I’m losing more and more of myself – that strong-willed “have no fear” cancer thriver. I just hope I can find the will to find myself again.