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
Continue reading “Weekly Gratitude Quotes”

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.

The Confirmed Recurrence and Yet, Another Brain Surgery

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

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

toonvectors-12240-140

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

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

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

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

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

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

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


In the Clear! And, the “New Normal”

happiness2

In my prior post “Vacation Period?” Seriously…, I described the traumatic period between my last radiation treatment and my follow-up MRI.  Well, the day of reckoning had come – the MRI results were in.  ALL CLEAR!  No sign of cancer!

Without a doubt, I was indescribably relieved.  I cried tears of overwhelming joy.  That metaphorical tons of bricks weighing on my shoulders immediately lifted.  It was almost surreal.

Once my oncologist sat down with me celebrating the incredible news, we got to another topic… the emotional turmoil of those weeks leading up the MRI.  She knew full-well what I had been going through, thanks to multiple calls to her office.  Even with the clear MRI, she knew I needed help to process all of this.  So, she recommended several things, including seeing a therapist, as well as a psychiatrist for an evaluation to determine if I
needed medication to ease the anxiety that had overcome me during that period of time.

I had never been in therapy.  I was of the strong opinion that here in the U.S., we were over-medicating ourselves with antidepressants and drugs of all sorts.  I’ll be honest – I was against it all.  However, she felt that it was almost a “prescription” to seek out professional help within the hospital’s incredible counseling center.  So, because I literally trusted her and all of my doctors with my life, with much hesitation, I agreed.

Additionally, she suggested reaching out to the hospital’s social worker, who specifically dealt with neurology patients and particularly brain cancer patients.  I had an easier time agreeing to that idea.  It seemed a lot less clinical.  As it turns out, the social worker pointed me to some really great cancer organizations, particularly First Descents (http://firstdescents.org/).

During the dark period, it also hadn’t helped that I had been on a seizure medication known to have terrible side effects regarding anxiety/depression in some patients.  So, with the clear MRI, my seizure doctor was comfortable taking me off that medication and replacing it with another drug.  Changing that medication made a world of difference for my mental state.

Going back to the time period between my surgery and throughout my radiation period (approximately 6 months after my inital diagosis), I had actually been extremely positive and strong.  I had become heavily involved in the National Brain Tumor Society (www.braintumor.org).  I had also just signed-up for a post-treatment support group through CancerCare (http://www.cancercare.org/).  So, I will say I was fortunate that the dark period only truly lasted those several weeks before the MRI.  Now, with the news the MRI was clear, boy, did my whole outlook change!  I went back, almost immediately, to that fighter/survivor, who people had truly been amazed by.  People had called me an “inspiration” (discussed in my post https://braincancerbabe.com/2016/04/19/being-an-inspiration/) and yeah, I felt that way again.

So, life began to quickly normalize again.  I felt happy.  I felt strong.  I felt positive.  I truly felt that everything was going to be okay.  Of course, the fear of a recurrence remained in the back of my mind, but it didn’t dominate my thoughts.  I was meeting so many other survivors and realizing, “Hey.  I’m not alone in all of this.  Other people actually felt the same way I did!  This was NOT a death sentence”  I went back to work, part-time.  Although, I still hated my job and actually regret going back so soon.  I did see the therapist and set up a regular schedule of appointments.  The psychiatrist, thankfully, deemed that I did not need antidepressants.  Life felt good again.  It felt really, really good.

While yes, life did normalize, it was indeed my “new normal.”  I felt comfortable with the fact that cancer had changed my whole world, but it wasn’t all for the worse.  I truly embraced a new perspective on life, namely, “Live every minute of every day like it’s your last!  Appreciate everything you have!”

I saw how lucky I was to have come out of all of this with very, very few side effects.  I was doing pretty much everything I had been doing before cancer entered my world.  I mean, seriously – I had had brain cancer and brain surgery!  Yet, here I was, pretty much the same girl I had been.  I truly recognized what an amazing support system I had.  The kindness, concern and love from even strangers overwhelmed me.  Man, was I loved!

I continued to be monitored very closely by my neurology team.  At every visit, they were beyond thrilled that the dark days were behind me (which I now see as a very brief period of time in the grand scheme of things).  They loved seeing that girl they had first met, who showed what a fighter she was and how she continued to embrace life so much.

I was kickin’ ass.

However, things did change in early 2015.  So, that will lead to my next post and specifically, Round 2 of the cancer chaos.

 

 

“Vacation Period?” Seriously…

In my last post, So, you’re going to radiate my brain????, I talked about my 6 weeks of radiation.  As I described, radiation had become part of my regular, daily routine, as odd as that may sound.  Following the end of my 30 radiation sessions, my doctors dubbed the time until my next scan my “vacation period.”  Seriously?

There’s power in the words you choose, especially when it comes to cancer.  To call that time “vacation” is just simply wrong.  That term should never, ever be used.  So obviously, the period between the end of radiation until my next scan was by no stretch of the imagination, a “vacation.”

First, I lost that daily routine.  I was left all on my own to  find something else to do, day in and day out, to occupy my time.  From leaving my home to arriving back after radiation, I was out of the apartment for hours.  I wasn’t sitting around, pondering my own thoughts.  If there’s one thing that keeps you out of your head, it’s following a routine!

With the lack of that routine, things became VERY dark.  Frankly, this was the first time I truly felt the weight of what I had just gone through.  The “fight or flight” mentality had weakened.  I found myself sitting on my couch, hysterically crying, asking, “What the hell just happened to me?”  It never got to the point of, “Why me?” although that’s a perfectly understandable, common response.  However, it was the first time I truly thought about death.

My husband, my family, my friends – they had careers.  They worked all day.  I didn’t have any fellow cancer patients to turn to.  I felt completely and utterly alone, left with my own frightening thoughts.  Again, to call this a “vacation” makes me sick.

It’s a strange phenomena to me that the end of treatment was worse than undergoing the treatment itself.  I’ve heard both sides of this – some patients see treatment as horrific and ending treatment a true relief.  However, I’ve also met many survivors who felt just like me.  Again, each and every person is different, just as each and every cancer is different.  There is absolutely no judgment in either experience or opinion.

vacation-keep-calm

Another frightening aspect of this “vacation” was the lack of contact with medical staff.  Sure, my doctors were a phone call away.  Yet, going back and forth to the hospital for 6  straight weeks meant there was always someone physically there to monitor me.  If I had an issue, or a question, it could be handled right there and then.

There was a specific incident I remember during that “vacation” when I came down with a simple, routine cold.  I convinced myself it was so much more.  I was sure the tumor was back and it was affecting my whole body.  I also feared that every little twitch in my left leg was an oncoming seizure.  My oncologist’s nurse had to practically talk me off the ledge.  Yet, she understood what was going on.  It wasn’t the first time a patient had called believing the most minor thing was the end of the world.

And so, I truly mentally, emotionally suffered those 6 weeks.  It also didn’t help that leading up to the next scan, my first bought of “scanxiety” hit.  For any cancer patient out there, I would safely bet, you’ve experienced this.  For anyone who isn’t familiar with the experience, it is basically an overwhelming fear/anxiety/stress leading up to the results of a scan.  Many compare the symptoms to post-traumatic stress disorder (PTSD).  Uh, I can relate and wholeheartedly agree.  (As an aside, with no medical training whatsoever, I believe that the entire cancer diagnosis and what trauma follows brings about PTSD).

My immediate post-op MRI had shown that the surgery was a success and there had been a total resection of the tumor.  Yet, there was always that chance that there were cancerous cells still there, lurking around that no one could see just yet.  So, this next MRI was the first since my surgery.

The thoughts that consumed me: Would the scan show the tumor had already grown back?  Had the radiation worked?  Was there serious swelling on my brain caused from the radiation?  Could there be any visible side effects from the radiation?   Although, I didn’t even really know if that was possible…  Was I going to have to undergo another surgery?  This time, would they decide I’d need to start chemo?  Worse off, would they tell me that none of the treatment had worked and we simply had no other options?

At that point, I didn’t know about scanxiety.  I had never met or talked to a fellow patient/survivor, especially one my age.  I thought I was alone in this feeling.  Was I going crazy?  In fact, although I’m sitting here writing about it, I actually have a difficult time putting into words just how consuming and terrifying these thoughts were.  It actually felt like I was carrying a ton of bricks on my shoulders.  And worse off, no one around me truly understood, although of course they were sympathetic and tried to understand.

So, the time finally came where I underwent that first post-radiation MRI.  I don’t believe at that point I had been introduced to the magic of anti-anxiety medication.  So, as far as I can remember, I went into that MRI cold… nothing in my system to ease the fear of: 1.) going into that MRI tube, again; and 2.) the pure, raw fear of what that MRI could possibly show.  P.S. I have never ever once opened my eyes while in the tube, despite the countless MRIs over the last 2 years.

Luckily, the way my appointment worked, and still works to this day, I met with my oncologist just hours after my MRI.  So, I would know the results that day and then.  And that is the topic of my next post.