It’s ALL About Everyone Else

I grew up as many Irish children do. I never worried about being grounded or punishments. (Okay, many Irish kids did get punished, but not my point here).

No. What I got was the “Irish guilt” – the constant feeling of how I was disappointing my parents, not doing what was expected of me and/or a whole assortment of ways in which Irish parents make you feel like you’ve committed felony murder. Many times when I hadn’t actually done anything wrong, mind you.

They say there’s a stereotypical “Jewish mother”. Well, Irish mothers are that times 10! Yes, an Irish mother will love her children with every ounce of her being. Yet, don’t ever cross her, or do anything that she would interpret as crossing her. She will guilt you until you bleed – even if you’re sick.

Funny Because It’s True!

Given recent circumstances that arose within my family, I was compelled to write this post.

While this issue has come up countless times, this particular situation truly hurt my heart because as the perceived “sick” person – it’s not about me. It never is. It’s ALL about EVERYONE ELSE!

This unfortunate truth relates to family, friends, work, and on and on. However, this particular post is focused on my relationship with my immediate family.

I cannot begin to count how many times my mother has said, “I’m just worried sick over you” or “I can’t sleep I’m so beside myself over you”. Not once is it ever about how I’m feeling. It is ALWAYS about her. As for my father, he will not visit me in the hospital – absolutely refuses. Apparently, “he can’t handle” seeing me in the hospital. He does not call. He occasionally sends a text of a photo of our dog, which my parents take care of when I’m hospitalized. I may get an email or two, if I’m lucky.

Yet, because he is a doctor he constantly has an opinion on the course of action my doctors take, and it’s usually something I do not agree with.

Just one instance that exemplifies this perfectly is when I consulted with a particular neurosurgeon at the hospital where my prior surgeon had retired. He was the Chief of Neurosurgery and a man I loved and respected. We had a fantastic relationship, so trusting my brain to anyone else was terrifying. While this consult was with someone who trained under my former surgeon, to say he paled in comparison is a huge understatement.

This man really only spoke to my husband and father, while he either ignored both my mother and I, or scoffed at our questions. He proposed an extremely invasive procedure. Admittedly, I ultimately did have the procedure but only after a much less invasive procedure failed to remedy the problem, and I had it performed at another hospital. Anyway, I asked very direct, difficult questions that this surgeon did not want to answer. Yet, when my father asked the same questions, he indeed answered them. He constantly diminished my concerns – the number one concern being that he proposed inserting a shunt into my brain that would drain fluid into my abdomen. Yet, when I questioned him on the fact that we were uncertain if there were cancerous cells in my brain and he was now proposing to drain this brain fluid into my abdomen, I was told, “You don’t need to be concerned with that. It’s unlikely”.

Well, sorry but “unlikely” is not good enough! What if there was cancer in my brain? What then? Oops, we made a mistake! Nope. Just. Nope. Not. Good. Enough.

I say all this to say that my father lit into ME after the consult stating “how obnoxious” I was to the doctor – as if I was to blame for his arrogance, male-chauvinist attitude and total ineptitude! I may not have gone to medical school, but I did earn a law degree, passed 2 bar exams and knew I was asking the proper questions for my own protection. I’m no idiot, especially when it comes to my health. Yet, my father chose to try and make me feel guilty, for some unknown reason, despite how openly disrespected I was by a stranger. He chose to berate me about pushing a doctor on serious issues related to MY health!

My father and this surgeon totally played into one another’s “God complex”. That ish does NOT fly with me though. Especially the male dominant BS. Not to mention, this man had us wait over 3 hours to even get back into the exam room and literally ran out the door with not even so much as a goodbye! The four of us just stood around looking at one another, asking “Is he coming back?” The answer was, No, he did not come back. About 5 minutes later his awful nurse entered the exam room as if nothing had happened. Needless to say, I found another surgeon who is so kind, gracious and much more competent.

Side Note: I did file a complaint with the patient advocate over this doctor’s behavior. He called and apologized, but clearly he did not even recognize how poorly I was treated. How could I trust my brain with someone so unprofessional and unaware of his behavior?

Moving on…

Now my mother has her own unique brand of guilting me because of my sickness. I am reminded pretty much daily that I’ve been sick. The constant barrage of questions: “How are you feeling today?” “Did you have a seizure?” “How is your hand?” “Are you walking okay?” “Any falls?” After 6 straight years of this, it’s gotten pretty old. Despite telling her that I don’t need to be reminded of my condition constantly, all I get in response is, “Well I’m just so concerned about you.” While that may be true, I’m 40 years old, not 4 years old. Also, Irish people LOVE misery. Walk into a local pub back there and there’s 3 topics. The first: Who died. Second: Who is sick, what do they have and a list of 10 other people who had it or have it. Finally: The weather. Always the bloody weather. It’s either “freezin” “roasting” or “lashing rain”. There may be some gossip about this one or that one, but guaranteed it always comes back to those 3 topics. It’s like misery is in our DNA or something.

Not only does my mother’s guilt involve feigning concern but also claiming she’d do anything to help. However, if I actually asked for help, I’d get 300 excuses why she “just couldn’t”. And every 300 of those excuses would ultimately circle back to one thing – work.

What it all boils down to is simple: my entire life, all my parents did was work. I often wondered why they even had a child because in their list of priorities it would be: 1.) Work; 2.) Each other; and, 3.) Me.

Do my parents love me? 100%. Have I ever wanted for anything material? Never. Did they do the best they could? Yes, but the caveat was always and forever will be, as long as it doesn’t conflict with work or requiring that they leave the 2-mile radius of their clinic/home. Yes indeed, their practice is in the home I spent the better half of my childhood in.

My parents are the epitome of the immigrant mentality that “America is the land of opportunity”. Yet, in order to build a successful practice, they’ve worked their fingers to the bone and still have not retired despite being in their 70’s. They do not believe in vacation or days off. And sick days? Forget it. So in a nutshell, this was the environment I was raised in.

Of course, when I was diagnosed with brain cancer over 6 years ago their work did not slow down. In fact, I was guilted into the notion that now, they’d have to work even harder to supposedly support me. I have a husband with a job. I don’t live beyond my means. I get disability. Has their financial support helped? Definitely, but as I mentioned, it comes at the price of constantly feeling guilty that because I got sick, they still have to work.

On top of all this, add my husband’s Irish family and you’d swear I only got sick to spite all of them! It drives his sisters insane that he loves me so much. One is in the midst of a divorce and the other… I could write a book on the dysfunction of that marriage! While my husband will always be a Mommy’s boy, I know deep down they all blame me for being sick and not giving him a child because well, that’s all women are supposed to do. Forget a career or anything except push out some kids. Since I was diagnosed just a year and a half into our marriage, I am once again the guilty party for failing at my “womanly duties.” It’s safe to say his sisters and I equally despise one another, but then again – my sickness is ALL about everyone else, right?

At this point, I’m done with managing everyone else’s emotions, feelings, etc. about MY health! I am no longer going to speak to anyone who I do not trust with my emotions. I will remain silent because as the quote below states: I am tired of fighting. So very, very tired.

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.

What’s a “Bur Hole” Anyway? (Surgery No. 6)

There are a ridiculous amount of medical terms you learn as a cancer patient.

There are about 130 different types of brain tumors alone. Never mind having to learn about the areas of the brain the tumor may affect, then what part of the body that area of the brain it controls, and on and on. I practically feel like we, as cancer patients, should be awarded medical degrees!

As an attorney, so much of my job involved research. Since my diagnosis nearly 6 years ago now, I raise issues with my doctors to the reply of, “Oh, that’s a very good point.” I’ve sent my doctors articles about new research, trials and information they admittedly were not aware of prior to me bringing it to their attention.

Yet, after receiving my discharge papers following my sixth surgery, I learned a whole new phrase, “bur hole craniotomy”!

Obviously, prior to the procedure I knew what I was going in for – a needle was going to be inserted into my brain to drain the lesion/cyst in my head that’s constantly filling with fluid, causing swelling and pressure to build up in my brain. That pressure then causes me to lose my balance and fall, causes unbearable fatigue, increases my seizures and makes me a prisoner because I cannot leave my home safely.

On December 5th, I underwent the procedure. Immediately after, I felt great. I regained use of my left hand. I walked around without my wretched cane. However, I experienced and am still battling intense migraines. The recovery was short-lived because the fluid has returned.

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)

They Tried To Make Me Go To Rehab… And I Go, Go, Go

After a week in ICU following my 7th brain surgery, I was sent to inpatient acute rehab. Since they seriously work me here, this won’t be a long, deeply reflective post. I’m definitely “on the go” constantly here.

Nevertheless, I did think it was important to post about my experience thus far.

This is actually my 2nd stint in an acute rehab facility. In fact, back in 2017 when I had to be transferred to an inpatient rehabilitation facility my doctors tried to get me into this particular rehab. Unfortunately, there were no beds available and thus, I wound up in a very good facility. However, it’s nothing like this experience!

I’d say I’m currently in the “creme de la creme” of neurological rehab facilities. It’s pretty rare to have absolutely NO complaints about a healthcare facility these days. Yet, I don’t have a single issue and can only sing the praises of every single staff member. From the doctors to the men who clean the floors, everyone is truly amazing.

I’ve been here for two weeks now, and have another half week ahead of me. Okay. I am getting a bit tired of the same food options, but if that’s my only gripe-that’s pretty darn fantastic!

Before this last surgery, I could barely walk. I was in constant fear of falling, and for good reason. I was basically falling every day. I had no balance. I slept until noon, on good days! My body was so fatigued it took every once of energy to simply get out of bed. Then, I’d merely move to my couch. Let’s just say I blew through countless Netflix movies and series. Around 8:00 p.m. I’d be asking my husband to bring me back into the bedroom. I’d take a quick shower or bath, and I was done.

My day here includes:

•Wake up at 8:00 a.m. & eat breakfast

•Start physical therapy around 10 p.m. and work on balance exercises, walking with and without my cane (Yes!), using the treadmill, walking along the unit, etc.

•Speech/Cognitive therapy immediately afterward

•Lunch at noon

•Then, occupational therapy where I work out my weakened left arm through stretches and a state-of-the-art robot that measures my range of motion. It’s pretty cool, I have to say. We also work on “Activities of Daily Living” (ADLs) like how to step into the shower safely, cooking a meal or doing laundry. Now, I’m doing squats to pick things up and not dropping everything I put in my hand.

•Once my standard therapies are over, I can join a gym class, go to art therapy, and/or horticultural therapy (potting an array of beautiful plants and learning how to care for them).

I can achieve all of this before 4:00 p.m.! Prior to this surgery, I was barely able to function never mind participating in so many amazing activities before the sun goes down.

I’d never imagine eating dinner at 4:45, but it’s the early early bird special here!

By the time I finish dinner, it’s time to shower-up and start getting ready for bed. Who knows? Maybe this night owl just may learn to become an early bird… Realistically though, probably not.

It’s amazing what these dedicated professionals can do for people like me with such extreme neurologic deficits. It’s even more fascinating what they do for people much worse-off than me.

The brain is truly an incredible thing.

“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.

stressfreezone

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.

635766245509689250-Wonder-Woman

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.

Continued Hospital Stay

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

cartoon

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

hospital-gown_cartoon

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.

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.