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)

“Lucky Number 7”, or At Least I Hope So

As I write this, I’m laying here in ICU…Still. Thankfully, it’s not an isolated ICU, so friends and family can come and go. Most importantly my husband is allowed to be here everyday, so the days go by much quicker than the evenings. My “estimated” hospital stay of 1-2 days following surgery No. 7 is currently on Day 7 with a “possible discharge to acute rehab tomorrow”. However, I’ve been hearing this for quite a few days now. Unfortunately with my case, this is no surprise.

It’s a natural question to ask, “How long will you be in the hospital?” However, I have learned the hard way to take that “estimated” time period with a complete grain of salt. It’s NEVER what they estimate!

Something always seems to happen; be it a simple revision of my skin graft (Surgery No. 4) when they unexpectedly found 3 separate bacteria in my skull bone, and what was only meant to be a one-night stay turned into a full week vs. when I was released the same night after they removed a small part of my skull that was totally unconnected to the rest of my skull and excised a wound on my scalp (Surgery No. 5).

So, here I am, alive but not so well, after Surgery No. 7.

Yes. I thank God I’m alive, and that I’m coherent enough to even say that. I recall most details of my other surgeries. However, all I can recall from the first few days after this surgery was the horrific, excruciating pain. Mostly I was in and out of a painkiller haze. Yet, when I was actually awake, the slightest movement caused intense, shooting pains throughout my entire body. Now, this chick has got a serious threshold for pain! So, when they asked, “On a scale of 1 to 10, how would you rate the pain?” and I could merely moan, “10” – you’ve got to understand just how severe this pain was.

Without getting into all the complexities of this 7th Surgery, I had a “shunt” or catheter placed into the area of my brain, where the tumors were removed and the radiation was beamed into where fluid would consistently flow. The fluid would sometimes cause increased swelling and thus, pressure in my brain. Now, with the shunt in place, the fluid will hopefully continuously flow out of the brain and be absorbed into the rest of my body. Science! It’s fascinating when you’re not the guinea pig.

I’ll have this shunt inside my body for as long as it holds up. It could be years, months. Again, who knows?

What I do know is that this has been one of the toughest, if not THE toughest surgeries so far. So, I hope and I pray that this will be Lucky Number 7 and I won’t have to see another Operating Room for a very, very long time.

Doing It All Over Again – The Second Surgery Pre-Op

In my prior post, https://braincancerbabe.com/2016/06/29/the-confirmed-recurrence-and-yet-another-brain-surgery  I explained that on June 30, 2015, I underwent my second brain surgery.

There isn’t much I’d detail about the day of that second surgery.  It was pretty much the same routine over again.  There were several ridiculous moments in the pre-op process though.  Just to add some levity to a seriously scary situation, I’ll explain.

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My surgery was delayed for quite a while (at least an hour or more) because the nursing staff found that my results of the routine pregnancy test, given to any female patient under a certain age, was “inconclusive.”  The chaos this caused around the staff was almost unbelievable – laughable even, if it hadn’t been me.  The staff even went so far as to call down a “specialist” to review the results.  Mind you, they never spoke to me directly – I overheard it all through my very bare curtain while sitting in my pre-op bed.  Of course, I knew full-well I was not pregnant.  Did I really need this on top of waiting for my second brain surgery???

My neurosurgeon finally came in with a smile on his face.  “So, you’re not pregnant!”  He clearly realized the ridiculousness too.  He always does though.  That’s why I love him so much.

Another thing I will never forget is the first nurse they assigned to prepare me for surgery.  I can say with absolute sincerity, I have never encountered what I’d consider a “bad nurse” in my hospital… with the exception of this one.  Let’s call her Jane (I don’t even know her real name anyway).

Jane was relatively young.  She was probably in her late 20s.  She never smiled.  She was completely monotone when she spoke.  Basically, she seemed like this was the last place she wanted to be.  Ya know, mind you, she was dealing with patients going into brain surgery!  Suck it up, honey!  If you’re having a “bad day” mine is probably a little worse.  So, needless to say, the pre-op station was probably the last place she should have been assigned.

On top of her miserable demeanor, it was her duty to give me my IV.  I mentioned casually as she was prepping the IV that I had great veins and no one had ever missed a vein.  Murphy’s Law, of course.  What would you know?  She was so mindless that of course, she missed my vein.  Apart from failing to get my vein, it actually hurt a lot.  I immediately began to cry, hard.  Rather than apologize, she took out the needle, rolled her eyes and sighed in annoyance.  Then, she stalked out of the area.

As if in a movie, kinda like Wonder Woman, another nurse (Let’s call her Mary) pulled back the curtain, swooped in and took charge!  While Jane attempted to come back in, Mary abruptly turned to her and said in no uncertain terms, “I’ve got this!”  I never saw Jane again, thankfully.

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From then on, Mary stayed with me, even wheeling me into the operating room.  We talked about imagining my favorite place, the beach, and sipping cocktails all day in the sun.  She helped soothe me and calm me down.  I laughed and smiled the whole time she was with me.  Thank God for Mary.

So, with Mary by my side, there I was, in the operating room.  I was surrounded by surgical staff frantically running all around.  Once again, I was looking up at the enormous operating room lights.  I could hear the loud hum of the MRI machine.  I was just about to undergo my second brain surgery, just doing it all over again.

The Confirmed Recurrence and Yet, Another Brain Surgery

In my prior post (https://braincancerbabe.com/2016/06/22/the-dreaded-word-recurrence/ ) I wrote about my suspected recurrence.  Well, that was confirmed in June 2015.  I say “confirmed” recurrence, although whether the lesion was indeed “cancer” can only be truly confirmed with the pathology report following surgery and removal of the lesion… but you get what I’m saying.

It is strange that I do not remember much about when I was told I would have to undergo yet another brain surgery.  Everything about Round 1 continues to be so clear in my head: the initial diagnosis, the first surgery, treatment, etc..

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This time around, I again met with my neurosurgeon in preparation for the surgery.  He was comforting in saying that the lesion was very “superficial” and remained very distinct.  The only way I can describe it is that the lesion hadn’t spread out like tentacles into other surrounding areas.  It would be a more simple surgery to just go in and cut it right out.  Okay.  That sounded promising.

I also clearly remember the phone call when my neurosurgeon’s nurse gave me the date of the surgery.  It was less than a week from the time my oncologist had confirmed that the lesion was indeed growing, indicating the recurrence.  However, I don’t really recall the emotions I felt, or any of the preparation leading up to the second surgery.  Maybe I’ve blocked it out subconsciously, or it is just part of my memory I’ve lost due to the trauma to my brain.  Maybe it’s both.

Furthermore, I didn’t have much time to think about the second surgery.  It was scheduled so quickly, thankfully.  I just wanted it done and over with – move on!

I do recall sitting back on the days leading up to the surgery and thinking, “Is this really happening again?  Another surgery?  Wasn’t one brain surgery enough?”  However, my doctors were confident that since I had come out of the first surgery so well, and had basically returned to my normal life, I would come out of the second one just as well.  That was a pretty reassuring thought, honestly.

From what I remember (and again, maybe I’ve just blocked it all out), I handled the situation pretty well.  One theory that has stayed with me is that my worst fear had come true – the cancer had come back.  So, if I got through this okay, I would have conquered that immense mental and physical battle.

All of my family and friends were blown away.  They were so frightened, but all I kept saying was, “I’ll be okay.”  I meant it too.  I had so much confidence in my medical team.  I knew what to expect this time.  Funny enough, it was the minor things that I knew were coming while I would be admitted in the hospital that I dreaded.  I hated the idea of the daily shots in my stomach to prevent blood clots.  I would be undergoing brain surgery, yet that’s what bothered me about the future hospital stay!  I also despised the gauze bandage turban they had wrapped around my head after the first surgery to reduce the swelling.  The thought of that turban actually made me angry.  I don’t know – maybe it was mind’s way of protecting me from the truly frightening consequences.

So, June 30, 2015 came along and I was once again reporting for duty – “Good morning.  I’m having surgery today.”  Again.


So, you’re going to radiate my brain????

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Following my initial brain surgery in April 2014, it took time to come up with the further “treatment plan.”  Given that I am so fortunate (insert sarcasm here), my tumor, an anaplastic ependymoma, is extremely rare.

All of my factors also played into how rare it was:

1.)  It was a primary tumor in my brain –  typically, my type appeared in the spinal cord and remained there,  or it would metastasize to the brain; there was absolutely no trace of cancer in my spine (confirmed through spinal taps – oh my god, the pain!)

2.)  My tumor is considered a childhood/pediatric cancer, so it is rare to find it in adults (some statistics show that only approximately 70 adults in the U.S. are diagnosed with a malignant, primary brain ependymoma every year.)

3.)  There are extremely limited studies regarding ependymomas, given how rare they are.  Thus, treatment options are basically – surgery, and/or radiation and/or maybe chemo.  Yet, the few studies showed that combining radiation and chemo didn’t make much difference, if any.  Thus, radiation was the standard protocol following surgery

4.)  My surgery resulted in a total resection of the tumor.  Thus, I was “technically” cancer-free, for whatever that was worth…

[DISCLAIMER:  This information is NOT meant to be taken as medical advice or gospel.  https://cern-foundation.org/ is the primary source for information on ependymomas)

So, following my surgery, I met my amazing “team” of doctors.  They are a god-send and I am literally thankful every single day for them.  My “team” consisted of my neurosurgeon, neuro-oncologist, seizure neurologist and radiation oncologist.  This didn’t even include the numerous doctors, who served on my hospital’s tumor board and studied my case alongside my primary doctors.

Together, my team came up with the plan – I would undergo 6 weeks of radiation (30 sessions 5 days a week) and no chemo.  I didn’t really think twice about it.  What other choice did I have?  I trusted all of these doctors.  I was being treated at one of the top cancer hospitals in the country.  Plus, there was really no other studies/information to show any alternative treatment.

Of course though, the idea of actually radiating my brain sounded insane!  Um, weren’t we all taught throughout our lives that radiation was a really, really bad thing?  Ex. “Don’t stand in front of the microwave!  Radiation!”  However, I don’t recall even asking that many questions.  I knew the really basic, possible side effects – swelling on my brain, fatigue, hair loss, etc.  So, I just kind of casually decided, “Okay, let’s do it.”

One of the most disturbing experiences regarding the radiation was the mask.  For those who don’t know, in order to radiate the brain, a patient needs to undergo a simulation.  Amongst other things, that involves forming a mesh mask to be placed on your face and around your head.  The mask would then be strapped down to the radiation table during your treatment.  It is so sci-fi I cannot even describe.  It is scary.  It is beyond uncomfortable.  It creates such pressure around your entire face and head.  Sometimes, it felt like I couldn’t breath properly or swallow.  I hated it.

I know some patients actually keep their masks.  I literally never looked at my mask.  I refused.  So, obviously I did not keep mine.

And so, I spent the first 6 weeks of my summer traveling 5 days a week to have my brain radiated.  The treatment itself never hurt.  It actually became very routine.  It was just a part of my day.

One of the most difficult parts came when I began to lose my hair from the radiation.  I never ever thought it would affect me so much.  Sitting on my couch, running my hands through my hair and holding clumps of it was overwhelming.  I cried – a lot.  I needed to get a hair piece, but I hadn’t actually lost enough to need a full wig.  When I sat down at the hair piece consult, I absolutely lost it.  I could not stop crying.  I guess it was one of the first physical signs that demonstrated, “Yes, you are actually a cancer patient.”  Frankly, I just didn’t look sick, or what we imagine a cancer patient is supposed to look like.  Yet this – this was an unquestionable physical sign that radiation was indeed entering my brain and causing side effects.  I was indeed a cancer patient.

Another side effect I wasn’t totally prepared for, despite being told over and over about it, was the fatigue.  It didn’t hit me as hard as I know it does some patients.  I literally went to my radiation sessions every day by myself on the bus and subway, which people were surprised by.  I made sure I walked every day.  I attended my PT sessions two to three times a week.  However, it took every ounce of my strength, both mentally and physically, to fight that fatigue.  Trust me, it isn’t just being tired.  It is a full body exhaustion.  However, as I was told over and over again, the best way to fight the fatigue was to basically, just fight through it.  So, I did.

I also spent a lot of time with friends and family enjoying summer as best I could.  I took a LOT of advantage of a friend’s pool.  I lounged on the beach as much as possible.  I laid out in the sun and read a lot.  I made sure I kept up my social life, although I obviously wasn’t frequenting the bars until 1:00 a.m.  I mean, for the first time in my life since my teens, I wasn’t working.  I was sure as hell going to take advantage of that!!!

So, after those 30 radiation sessions ended, my doctors advised that I would undergo my next scan in approximately a month to 6 weeks later.  I am still bitter and angry about this, but they called this my “vacation period.”  I wasn’t in treatment, so this was the time to rest and take advantage of my “vacation” from radiation.  It’s insulting to call it that.

My next post on the topic of Round 1 of my cancer life will go into the details of this “vacation period.”  Needless to say, it was NO vacation!

 

Continued Hospital Stay

Release from the Misery of the Neuro-Observation & Continued Hospital Stay

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The day after the surgery, when I guess they realized nothing incredibly serious would happen, I was moved into a private room with a roommate.  I remained there another full 2 days.  I know I was in incredible pain, but I will never forget and always worship my day nurse.  She is not only my favorite nurse, but one of my favorite people!  God, did she help me get through those awful days.

The pain/pressure wasn’t controlled too well and I was purely miserable.  The body forgets the actual feeling of pain, but we remember it happened.  To add to that pain, my fear of nighttime continued.  As a blessing, my night nurse would walk the halls with me, once I could walk of course, while we talked about our lives, our relationships, work, what-have-you.  She is also on the list of top nurses.

A very tough moment was the first time they got me out of bed.  Again, I was an incredibly active person when this all happened.  It was insane to me that the simple act of getting my legs over the edge of the bed to stand was so hard, even though “hard” really can’t describe it.  I began to cry, saying, “I can’t do this.”  I felt so defeated by all of this.  What a blessing I had a wonderful nurse’s assistant who encouraged me saying, “I wouldn’t let you do this if I thought you couldn’t.”  So, with that, I garnered my strength and stood up.  I can frankly say, it was one of the greatest feelings and accomplishments of my life, and I’ve been pretty damn successful in everything I’ve done.

And so, with time and fantastic physical therapists, I was able to sit in a chair.  I graduated to using my IV stand to make it to the bathroom.  Soon after, I began to walk the halls although I couldn’t do the entire perimeter yet.  That came soon though.  During that time, I colored a lot.  I colored a beautiful cloth flag-type thing – I don’t know exactly what to call it – filled with butterflies.  I hung it on my IV stand, and walked and walked down those halls.  I remember people smiling as they passed by me.  I hope that picture of butterflies gave them some comfort and a tiny bit of happiness.  It did for me at least.

My hospital has a recreation center full of games, arts and crafts, books, painting materials, etc.  It’s a bit cheesy, but its such a valuable asset for patients.  It also has an outdoor patio.  Frankly, it’s a gift.  After being cooped up in a hospital bed, just minutes of sun and fresh air feels miraculous.  However, the first time I was wheeled onto that patio, I had a complete breakdown.  I think the joy of that little bit of freedom overcame me and it hit me like a ton of bricks all that I’d just been through.  I cried and cried until I asked to go back to my room.  Thankfully, I was able to pull myself together to eventually go back there.

Probably most important to my recovery was my attitude.  I didn’t want to stay in that awful bed.  I wanted to sit up.  I wanted to walk.  I wanted to get the hell out of there!  Sadly, my roommate did not have that same motivation and complained quite a bit when the staff tried to get her up.  Sometimes, she outright refused.  Her nurses would also tell her to call them before she ate anything because apparently she had diabetes or at least very high blood sugar.  She never listened.  In fact, her family would sneak her heavy, unhealthy food.  I also overheard that when she would actually be released, she would be admitted to a rehab facility.  Honestly, I felt damn lucky I wasn’t in that situation, or possessed her overall attitude.  I don’t blame her whatsoever.  We all handle cancer, and especially brain surgery, in our own way.  I believe it’s one of the most difficult experiences in the world!  I was just different.

Another overwhelming moment came when occupational therapy (OT) arrived.  The therapist asked me to draw a clock.  I just couldn’t.  My mind wouldn’t compute what a clock was and particularly, how to draw it.  I was asked to repeat several words.  Again, I couldn’t.  I graduated every school with honors, survived law school, passed two bar exams, yet I couldn’t do things kindergarteners learned.  However, the therapist determined I actually wouldn’t need OT.  She was sure it would all come back because frankly, I was fully communicating and was basically myself.  (Even now though, I have a hard time with that damn clock!)

My recovery progressed and every time the doctors evaluated me, I was on the right track.  Despite it all, I was actually doing great.  Remarkably well, in fact.  So, after the day of the surgery and 2 full days afterward, I was ready to be released that 3rd day.

Post-Op and the Dreaded Neuro-Observation Area

Post-Op

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I woke up in the post-op room, but I don’t remember feeling any pain whatsoever.  Frankly, I felt high as a kite!  Those were some gooood meds!  My whole family was shocked because I was wide awake, cracking jokes and acting as though everything was fine.  My surgeon came back to see me and I continued to joke telling him, “I’ve had worse hangovers!”  (My relationship with my neurosurgeon has always been light and sarcastic, which I love)

The nurse eventually told my family I needed to rest and once they left, I don’t remember much of that post-op room except for feeling strangely comfortable there.  (Again, they were some gooood meds!)

Post-Op Neuro-Observation

It was when they moved me to the neuro-observation room that hell broke loose.  The meds began to ware off.  I could feel the intense pressure of the awful gauze turban.  (I HATE that thing)  It was also nighttime.  I had a horrible fear of nighttime/bedtime suffering from years and years of insomnia.  I also had new nurses, who I particularly didn’t like much.  It was dark in there.  I was closed off in my own little section, curtained between three other patients who themselves had just survived brain surgery.  It was not a pleasant space.

The worst came when they advised I would have to undergo a post-op MRI.  It was then I suffered the first panic attack of my life.  I’ll be honest.  Looking back, the nurse and the nurse’s assistant did not handle it well.  The nurse said in a slightly obnoxious tone, “She’s having some sort of panic attack.”  The nurse’s assistant, a very large and aggressive woman, held me down.  Kindly, they at least IVed some meds and I did calm down.

Thankfully, and because my neurosurgeon is A-mazing, there was a total resection of the tumor.  I was technically “cancer free” which is a term I still don’t apply to myself even now.

Although I understand it and accept it now through therapy, my husband refused to stay with me that night.  Was it the best, kindest thing to do?  No.  Did he handle it well?  No.  However, I forgive him.  It was all just too overwhelming for us.

So, after he left, the second panic attack of my life came on.  I don’t remember much of it or how the nurse handled that one, but I know it happened.  Maybe I’ve blocked it out, for good reason.

Eventually, it came time to leave that dreaded area.  I hate that I’ve returned there two more times since.