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.

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.