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???
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)
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.
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.
I received this today and found it so beautiful that I wanted to share.
A new view of a situation is just what we need to answer a difficult question, or see something we’ve been missing.
There is no greater way to escape the troubles of daily life than to ascend into the welcoming embrace of a tree house. Like a bird in its nest, we feel held and safe in the branches, cloaked within a curtain of green leaves. Here we can breathe more freely and think more clearly, our hearts and brains fed by the oxygen released by the leaves. We float above the everyday world of the ground, enjoying a bird’s-eye view of all that remains below.
We may choose to be alone or we may invite a special friend to join us. Either way, this is our private world in which we get to decide who comes and goes. It is our haven where we can fully be who we are, shed the masks required by the world below, and reveal our most hidden secrets, dreams, and desires. It is also an ideal vantage point on the life that continues below the branches. Often, a new view of a situation is just what we need to answer a difficult question, solve a challenging problem, or see something we’ve been missing. It is as if we have ascended into the heavens and are able to tap into a higher awareness. We can draw on this airy energy to revitalize us, relax us, and feed us new ideas. When we descend, we are ready to enter the world again, cleaner, clearer, and often more inspired.
If you haven’t been in a tree house for a while, now may be the time to make one for yourself or find one you can borrow. If you can’t find or create an actual tree house, think of other venues that could provide the same experience–a rooftop perch, a quiet spot in a grove of trees on a hilltop, a light-filled attic. Or just close your eyes and visualize yourself ensconced in your perfect home in the branches of your favorite tree.
Welcome to My Treehouse
Just before my 3rd, most invasive and totally unexpected brain surgery that lasted over 12 hours, I backpacked across Costa Rica with my BFF who is really like a sister. Our major splurge was staying in a Tree House! It was unbelievable. Pictures cannot even capture the overwhelming feeling of it. Waking up to the monkeys screeching all around, the sweet music of various kinds of birds, sipping my morning coffee surrounded by a jungle practically untouched by human life! It was worth every penny.
I came back from Costa Rica a new, revitalized person. I surfed for the first time and even caught a wave on my first try! I slept in simple cabins and wore breezy, comfortable clothes. I stayed miles from a volcano. I went zip lining through a majestic national park. I even grabbed the massive rope swing and flew through the jungle pure Tarzan-style!
And then… weeks later I was back in New York City, a totally different jungle! Yet, I laid in the hospital awaiting a massive surgery. I suffered a horrendous seizure the night before on top of it all. Boy, how life can change so quickly.
@habitnest has a fantastic Gratitude Journal, which is a” 66-day, fully guided journal” that helps you build a gratitudepractice 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!
QUOTE “You already have everything you need to be happy” courtesy of the folks at Habit Nest, as shown below.
QUOTE “My 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.
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. Thatstrangernext 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.
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.
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:
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.
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.
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.
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.
Yes, I’ve had some very dark moments, some even in the last week or so, but I MUST fight on.
I’ve been told that I give more to people than they deserve, and that it only winds up hurting me in the end because I’ll never get back what I give in terms of my heart. So, when someone I let close to my heart, hurts me it hurts even more than the average person.
Some traits of people with this type of personality:
1. We absorb other people’s feelings no matter whether we know them personally or not, and it’s overwhelming for us (trust, I’ve cried through literally EVERY Disney movie);
2. We withdraw a lot, not necessarily because we want to be alone, but we NEED it;
3. Change comes very hard for us, and not just, “Oh no one likes change” – it’s extremelychallenging;
4. We are always thinking, not just about something like the weather, but deeply and intensely. It typically comes off as being “shy” or even “cold” (Yes, I have Bitchy Resting Face, but I’m not angry, I’m just constantly in deep thought)
5. We notice everythingand it can lead to an immediate sense of like or distrust of a person we hardly know. So, we’re labeled as “judgmental”.
6. When we hurt, we really, really hurt!
Do I expect people to be perfect? Absolutely not! I’ve got plenty of flaws, myself.
Lately, I’ve been asking myself, “When is it just time to walk away?” Recognizing that I do take things more personally than the average person, when does a relationship become toxic enough that I just have to let go? For me, this isn’t a romantic relationship, but so-called “family and friends “.
I don’t have any magical answers to this one, but I imagine, in fact I know, a lot of people who are ill face this dilemma. When we face our own mortality, we can’t help but look around at who has been there for us, who has offered help, who has sent well-wishes, cards, flowers, etc. On the other hand, we also see who hasn’t. People are supportive in different ways, but if you haven’t gotten one iota of support from someone, and you’re tied to them because they’re family or you have multiple friends in common, it’s tough.
I’ve made a promise to myself that in 2020, a new year, a new decade-I’m going to be cutting out a LOT of people. I can’t handle the pain of hoping this person, or that person will suddenly be there for me. They won’t and no matter what I do, I can’t “teach an old dog new tricks”.