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.

Weekly Gratitude Quotes

Weekly Gratitude Quotes

@habitnest has a fantastic Gratitude Journal, which is a” 66-day, fully guided journal” that helps you build a gratitude practice for life!” (Trust-I am in NO way a paid advertiser for this company; one day I’ll be that influential, but for now, I’m happy just to write about their product). FYI If you click the image below it will take you directly to their site.

One exercise is to write a “weekly “gratitude” quote, and put the quote somewhere you will see it every day.

So, I have decided to add this as a new category to this Blog.

Part of the Habit Nest Journal’s philosophy is that we all mess up, essentially. The important lesson is that you recognize you forgot and/or neglected to follow the consistent daily/weekly readings and exercises. Thus, if I do not provide a quote here every single consistent week, it’s okay. None of us are perfect and we all have to learn to forgive ourselves more. Be gentle to ourselves and not our own worst enemy. So, if I skip a week here and there, I’m not going to beat myself about it.

I’d encourage everyone to do this. Join me. Let’s see how consistent we can be!

Week One

QUOTE “You already have everything you need to be happy” courtesy of the folks at Habit Nest, as shown below.

Week Two

QUOTEMy body is incredible. It works on its own, without my effort. I will pay attention to how much I appreciate this vessel that is bringing me through the world.” again courtesy of the folks at Habit Nest.

This is very appropriate for this week before I go into surgery Number 7 on January 17th. I’m going to need to have a shunt (think a permanent catheter) placed into my my brain that will lead down into my stomach/intestinal area, so all the fluid that’s constantly filling into the cavity present in my brain caused by the tumors, tumor removal, radiation, etc.

Week Three

QUOTE “What if we were willing to acknowledge our own hurt and pain, and in doing so make sure not to diminish the hurt and pain of others? We could change the world.” Brene Brown

I’m writing this a little late in the week. Yay know, brain surgery kinda got in the way… However, this quote is so valuable to remember at this stage of my life.

I’ve been experiencing tremendous physical pain, and quite a lot of mental/emotional pain. I don’t think ANYONE could say it’s easy to go through your 7th brain surgery. I’m depressed sitting in the hospital without being able to just sleep in my own bed, snuggle on the couch with my husband and our dog, and relax in the bathtub. Hell, I’d just like to use the bathroom without someone watching!

I can definitely say, after all I’ve been through, I try my very best to be cognizant of other people’s pains and struggles. I’m not perfect. Sometimes I should be more patient. On the flip side, let’s be honest… some people really are just a-holes.

However, to add to the A-mazing Brene Brown’s quote above, “You never know what someone else is going through.” Maybe the person who cut you off on the highway is racing to get to the bedside of a dying loved one? Perhaps that store clerk was kinda rude because she’s exhausted working 2 jobs just to feed her kids because she had to escape an abusive husband? The list goes on and on.

I can say, I am living proof of this concept. People are literally shocked when they see me and I tell them what I’ve gone through. I could not begin to count the amount of times I’ve heard, “But you look so great” or “You’d never know by just looking at you”

So, let’s change the world! Let’s be just a bit more compassionate. Remember. That stranger next to you on the bus or subway, your server at lunch, or even a close friend could be going through something you have absolutely no idea about.

Week Four

QUOTE:

THE IRISH

Be they kings, or poets, or farmers,

They’re a people of great worth,

They keep company with the angels,

And bring a bit of heaven here to Earth.

I love this quote for so many reasons. Of course, being born in Ireland and a purebred, Irish woman I truly believe we are a special people. Through feast and famine, literally, we survive. Our strength and traditional work ethic helped build cities, like Manhattan. They don’t call us “Fighting Irish” for nothing!

My nickname is actually “Irish”. Funny enough, my father-in-law had the same nickname when he fought in Vietnam, drafted when he wasn’t even a U.S. citizen! Personally, had I received that draft notice I would have hopped the first plane back to Ireland and never looked back. Instead, he believed he needed to do what was asked of him and fought a horrendous, unpopular war winning numerous medals of honor. In fact, as the story goes, one day his platoon was in an area they feared was surrounded by land mines. My FIL was standing in one area for quite a bit and just after stepping away, a land mine exploded. Somehow, someway that land mine never went off in the entire time he stood on it. After that, his platoon told him, “We’re sticking with you, Irish! You’re our lucky charm.”

Just like my FIL, I truly feel I’ve been protected by angels. Despite everything I’ve been through, I’m still here. I’m a fighter and hopefully will never lose that spirit. Further, I hope my angels will continue to protect me and that I personally can bring a little bit of heaven to others here on Earth.

Struggling With Change

Thanks to a very kind soul, who follows my Instagram @braincancer _babe and who inspired me, I thought this was a great topic to start off this new decade. The idea of change has certainly been discussed throughout my prior posts. Yet, now it’s very different.

I struggle with any kind of major change, like seriously struggle!  However, I’m not one to just sit around day-in day-out, and accept redundancy. I get bored very easily doing the same thing all the time. In fact, it makes me utterly miserable. These two concepts may seem to conflict, but they actually don’t.

As a very simple example, I lived in the same one-bedroom apartment for 17 years. That is pretty much unheard of in the New York City metro area for someone in my age bracket (under 40 years old). Moving and even the thought of moving was horrifyingly stressful. Yet, my resume was full of varying places of work because I found every job, up until my last, so painfully boring. Another example is that I hated being on my couch doing nothing. I always had to keep busy, go out, work out or be active in some way shape or form. Otherwise, I’d be left with my thoughts and I’d drive myself crazy worrying about some meaningless thing. However, I also needed, No demanded, time to just be alone.

My Myers-Briggs personality is something in between an introvert and extrovert. I just don’t remember exactly what it is at the moment.

Anyway, more to my point and what brought me to write this post, is to discuss just how deeply challenging my diagnosis/treatment/side effects of treatment/what-have-you and the changes they’ve caused have been.

In my humble opinion, no one can ever go back 100% to the person they were prior to a cancer diagnosis. You learn to live the “new normal”, as many of us say. I went from being a career-driven litigation attorney in Manhattan, to someone who still cringes when asked, “What do you do for a living?” or when having to check the “disabled” box on any form asking about my employment status. I went from a young woman, who always wore make-up, had her hair & nails done in my 4-inch heels and power suit, to what I’ve donned “homeless chic” (no offense to the homeless). If you’re wondering what that looks like, it’s sweats, sneakers, no make-up, messy hair, my cane, a hat to cover my bald spot, and NOTHING like what I looked like before.

While this all may sound very vain and petty, it’s actually not. As a wonderful nurse in acute rehab told me years ago,”You’re allowed to grieve the former you – no matter what that is.”

Even worse is the total loss of independence. Right now, as I await my 7th brain surgery in less than 6 and a half years, I have no use of my left hand and cannot raise my left arm above my head. My balance and coordination is so off, I cannot be left alone. My husband is with me 100% of the time, minus the occasional trip to the grocery store or to pick-up my meds. Yes, I am extremely fortunate to have him here, but losing every once of independence I once had is mind-numbing. Obviously, I cannot drive. It’s too cold here for me to even go outside because if I do my whole left side tenses-up so much it’s physically painful. I used to constantly work out. Now, I can’t even do physical therapy. Hell, just walking to the bathroom is a feat these days.

Halloween 2019, of all days, I wound up in Urgent Care at my hospital after a bad fall at home. I was admitted, but waited until 4:30 a.m. to get a room. My scan results led to my 6th surgery, to drain the fluid from my brain. Yet, the tumor removals and so much radiation to my brain in 2014 & then 2015 created this cavity in my brain, where fluid will consistently flow into, and cause constant imbalance and pressure inside my head. Thus, there are no other options but this 7th surgery.

I actually fell a few weeks ago. I believe I experienced my 1st concussion. Whoa. That was not fun! Besides being covered in blood by the gash across my eyebrow, I immediately became nauseous and wanted to just go to sleep. I truly saw stars and couldn’t focus my vision. I’ll tell you, I do NOT know how football players do it. (I write this while my husband is literally watching football)

My poor, poor brain!

So, Yes, I hate the negative changes brain cancer has caused. It is an every day struggle to face these challenges! However, as I’ve written throughout this lil ole blog of mine, it has brought positive change as well. I’m not going to rehash them all here, but some very important ones:

  1. I never knew just how strong I was until I had to face this beast and all the havoc it has wreaked upon my life.
  2. I have learned who truly loves and cares for me – and who doesn’t. It’s a painful lesson in many ways, but I found “my tribe” and I’ll never let them go.
  3. I was always an advocate – that’s kinda the whole lawyer side of me; but, I know through my charity work that I’ve inspired people I may never even meet face-to-face. That’s why I tell my story to anyone who will listen. If I help just one person, well then, that’s enough.
  4. I’m not just a survivor. I’m a “thriver”! I took on brain cancer, twice, and said, “Nope! Ya, ain’t gettin’ this stubborn Irish girl” or at least that’s what I like to tell myself… whatever works.
  5. Yes, I’ve had some very dark moments, some even in the last week or so, but I MUST fight on.

“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.

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.