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)

And I’m Out! Back Home, But Boy Does Reality Bite

It’s pretty surreal being back home after my 7th brain surgery, a full week in ICU and then 2 1/2 weeks in acute, inpatient rehabilitation. It was strangely very bittersweet leaving rehab, where I had a very set schedule, was taken care of so wonderfully and most importantly, able to remove myself from reality. As the fantastic ‘90s movie says, “Reality Bites”.

Room With A View

View from my window at inpatient rehabilitation.

When I was initially told I’d be in acute rehab for more than 2 weeks, I had a pure and utter meltdown. I couldn’t imagine being cooped-up for that long without my husband, my dog, my own bed, any semblance of privacy, and on and on. Ugly tears everywhere! So many, many ugly tears

Yet, now that I’m out and back home, I feel completely overwhelmed. Piles of mail sat on my desk. Things weren’t in their “proper place”. (I’m no neat-freak but I’m very Type A when it comes to where things are placed, kept, etc. I don’t know, blame my parents… 🤔🤷🏻‍♀️) I had to make countless follow-up appointments. I had to call the apartment management because yet again, some dirtbag threw their cigarette butt onto our terrace. My darling husband fell for one of the easiest scams ever, and the laptop only I use got hacked. I not-so kindly asked him if I could introduce him to a Nigerian Prince.

Then came the real kicker! I received a letter from a debt collection law firm (the lowest of the low on the attorney food chain) threatening to file suit against ME because the home healthcare agency I was forced to use back in 2018 never paid the company THEY contracted with to give me home PT & OT. ***If you are reading this and are a debt collection attorney, I make no apologies. As an attorney myself, I’d rather chase ambulances***

Well, that of course set up a whole chain of phone calls to my insurance, my family attorney and the law firm threatening suit. Then, I proceeded to look back on all my prior correspondence with the home healthcare agency and the company seeking to sue me because they hadn’t been paid. Finally, I wrote a lengthy email to all parties, copying my attorney, having to “make my case” in writing how I was in no way responsible for this money, threatening to sue the firm for harassment, and underscoring that the Court wouldn’t look too favorably upon some firm trying to make a recovering cancer survivor pay almost $5,000 because their client signed a contract with a less-than reputable home healthcare agency.

So, yeah, reality really f***in’ bites! While I imagined coming home would be so joyous and relaxing, it’s been anything but relaxing. Who leaves the hospital after nearly one month and actually wants to go back???

For anyone who has never seen this movie, you’re missing out!
The good old grungy 1990’s

I know things will settle down, and I’m being a bit dramatic. My fellow patients I met during my stay, who will remain hospitalized for some time would probably kick me for wishing I was back there. However, there’s something very distressing about returning home, no longer just one “call bell” away from help. I was so fortunate to have been in such a top-notch facility. There was always someone to talk to, who understood everything I was going through. Whether it was a social worker, a therapist, a nurse or fellow patient-someone was constantly there to support me. They were right there in the trenches with me, and there wasn’t ANYTHING those nurses, aides, or doctors hadn’t seen or heard before. It was a total judgment free zone.

So, now I’m out. I’m back to the real world. Maybe I just need to chill out on my couch with some friends, puff a lil of my medicinal med not permitted in the hospital, go grab snacks at a gas station and start dancing to some cheesy music. (If you’ve seen the movie, you’ll get the reference)

Operation Day and the Surgery

Operation Day!

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I vaguely remember waking up that morning, getting to the hospital and walking onto the surgical reception floor.  I also vaguely remember, practically whispering, “I am here for surgery.”  I waited in the reception area with my husband and parents before they called me back.  My mother would not sit still.  So, I was the one who kept having to calm her down, never mind that I was the one facing surgery.

I was the first scheduled case, so there wasn’t too much time before they called my name.  I walked into a whole new world.  The pre-op room was huge with lines of curtained-off beds.  Could all of these people seriously be going into surgery this morning?  I felt very lucky to have a nurse from Ireland.  It led to easy-going conversation about what parts of Ireland we were all from, and what brought us all to the States.  It helped me forget just a bit where I was and what I was facing.  However, I stayed very quiet.

At that point, I was still scared of needles and IVs (oh, how times change!).  So, they were not fun.  The anesthesiologist came back to talk to me.  He was also comforting and calmed me as best he could.  However, when the moment came to send me into the operating room, I completely and utterly lost it.  I was hysterically crying and found it hard to breathe.  The nurse immediately told the anesthesiologist that they needed to IV some meds ASAP.  It probably wasn’t a good idea to send a patient into the operating room like that.

The meds did work fast, thankfully.  However, I remember being wheeled down the hall and into the vortex of the operating room.  I could hear the MRI machine, as it was yet a noise I was used to – oh, that would come with time.  I stared up at all of the fluorescent lights.  I saw numerous people hurriedly walking around in scrubs.  Then, I saw the anesthesiologist looking down on me.  He asked me to start counting, but I think I got to about the third number before I lost consciousness.

The Surgery

Obviously, I remember nothing of the actual surgery.  That’s surely a blessing, as I’ve heard some patients actually do recall slight moments.  As far as I understand, they used a twilight anesthesia so that they could test my neurological functions with the MRI.  I vaguely remember it coming up, but I can’t confirm that at this moment, nor do I really want to.

So, I underwent a 3-hour craniotomy, defined as “a surgical operation in which a bone flap is temporarily removed from the skull to access the brain.”  The entire tumor was removed, referred to as “full resection.”  A titanium plate was placed in the area and I was then all stitched up.  They placed an awful, horrible gauze turban around my head to prevent swelling.  Amazingly, just a line of hair was shaved, so it was barely noticeable once the turban was removed.  (Getting that turban removed after 3 full days was an incredible physical and mental release).  Then it was off to the post-op recovery room, where I would remain for several hours.