“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.

Relationships, “It’s Complicated”

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I could write for days on this topic… but, for now just a brief post.

When you’re the sick one, so often YOU have to “manage” all the feelings, emotions, mental state of family, friends, significant others, etc.  Yes, they love you.  Yes, they’re concerned about you.  Yes, they worry about you.  Yes, they mean well.

Yet, unless you’ve been there, it seems like so many of our loved ones don’t understand that while we’re going through physical, mental and emotional hell all of THEIR concerns and worries also get projected onto us.

If I had just a nickel for the amount of times I’ve had to reassure, or at least tell those around me, “Don’t worry.  I’ll be okay.”  Well, I’d have a lot more money in the bank!

It breaks my heart when I hear people, who have battled this disease and come through it, talk about all the people who walked out of their lives when they got sick.  The healthy ones who “couldn’t handle” it!

Closing in on six years in this “Big C Club”, I’m only now beginning to understand why that happens.  Ultimately, most people act weak until they have to face something tragic, go through something that challenges them to their core, or somehow become aware/enlightened of their own inner-strength through mindfulness or meditation practices.  We all have this strength.  Yet, so few people are aware of their inner-power, i.e., the power of our true spirit/soul/nature/whatever term you choose.

Honestly, before I got sick, I absolutely loved the holidays.  They’re a time we should be happy, joyous, surrounded by those we love and who love us.  I could never stand the people who complained about how “stressful” they were – it’s the exact opposite of what the holidays were meant to be!  I relished in trying to find that perfect gift for everyone.  I would sit there with such anticipation, so beyond excited to see the reaction on loved-ones’ faces when they’d open their gifts.  Decorating my Christmas tree every year with either “Elf” or “Christmas Vacation” on the TV has been my own little tradition since I got my 1st apartment.  I loved having my “girls’ holiday dinners” with my close friends.

Yet, these past few years I’ve dreaded the holidays.  Besides the fact that some medical catastrophe always seems to creep up around November/December, or around Easter especially.  Well now on top of all that, there always seems to be some kind of family-related “drama” – and if it’s one thing in my life I do NOT want, it’s drama.  It all circles back to the sad reality that when you’re sick:

  • Some people will inevitably turn their back on you because “they can’t handle it”
  • You, despite being sick, have to inevitably “manage” other people’s emotions and feelings
  • You will be a “topic of conversation”, like it or not
  • How many times will I have to answer, “How are you feeling?” though truthfully no one really wants the hard-nosed truth.  Imagine sitting around the table, while that delicious turkey is being carved and answer, “Well, I feel like absolute s##t almost everyday.  I struggle to just walk to the bathroom.  I sleep until noon because my body is so treacherously fatigued that if I wakeup any earlier, I may fall.  I can’t go outside because the cold air seeps itself down to my bones and my entire left side becomes completely rigid.  I have headaches almost everyday that debilitate me.  And, I’m one of the lucky ones!  Someone I knew just died of cancer.  But how are you?”  Yep, your family will really want to dig into those mashed potatoes and gravy after that…

So, yeah, as if cancer doesn’t suck enough, it makes relationships pretty “complicated” to put it lightly.

 

 

 

 

– On Grief – “THERE ARE NO WORDS…”

“There are no words…”  It’s what I find myself saying when a friend is deeply suffering or struggling, when I learn someone has been newly diagnosed with cancer, and especially when I learn that someone has passed from this ugly disease.

I learned last week that yet another beautiful soul was taken from this world, all too soon.  He was just 30-years-old, the age when most of us in the New York City area are just “finding our way”.  Two years ago, he was living in Manhattan, had a successful job,  came from a wonderful family, and was loving life.  Then, out of nowhere he suffered a seizure only to learn he had a golfball-sized lesion in his brain.  It turned out to be a glioblastoma, which if you’re reading this blog, you likely know is the deadliest type of brain tumor.

NO ONE is a statistic, but the median 5-year survival rate from a GBM diagnosis is approximately 5-6%.  In other words, when people hear they’ve been diagnosed with a GBM many begin to “make arrangements” and typically pass within 10-15 months.  There are no words when hearing such a dire statistic.  There are no words when you hear that someone has been diagnosed with a GBM.  And I certainly have no words when I hear that a “30-year-young” man, who was so deeply full of life, is now gone.

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In May of 2017, I lost a very dear friend to a GBM.  I think about her constantly.  I miss her.  At the time she passed, at the ripe old age of 35, she had already undergone 4 brain surgeries.  I had just undergone my 4th in April ’17.  By then though, she was nonverbal, having had a severe seizure and suffering from an unstoppable tumor wreaking havoc upon her entire body.

We were “partners in crime” in our brain cancer world.  We were fighters.  We were strong, otherwise extremely healthy young women.  No one else understood me and what I was thinking, feeling, and going through like she did.  She’d have surgery.  I’d be undergoing more radiation.  Then, I’d have to undergo another surgery, while she was undergoing more radiation, or yet another clinical trial.  I would sit with her while she waited for her radiation treatment, or while she was getting her chemo.  She would visit me in the hospital while I awaited my next surgery.  Although we saw each other, thankfully, outside of the hospital, somehow someway we’d always wind up back there together.

I was, in fact, the first person she saw when she learned of her final recurrence.  Her husband was away on business and she went to her appointment alone.  We had plans to meet for dinner right next to the hospital because I too had an appointment that afternoon.  I’ll never forget that day for as long as I live.  Once again, I found myself muttering between sobs, “There are no words.”

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Yes.  As the quote above says, “Cancer is messy and scary.  You throw everything at it…”  Well, my sweet friend threw everything, and the kitchen sink, at it!  She never forgot to throw love at it too.  She was a fierce advocate for brain cancer awareness, raising funds for multiple charities.  She was even welcomed at Vice President Joe Biden’s Cancer Moonshot Summit.  Even though she was suffering, she would still find the will to speak publicly about her story.  She was my hero.  She always will be, yet she’s gone.

THINKING ABOUT THE END

There’s one particular moment before my 3rd surgery I’ll never forget.  My dear friend, even after undergoing who knows what round of chemo, still wrangled the strength to sit with me in my hospital room.  Of course, just as she arrived the aides came to take me to a pre-op scan. I had only been waiting ALL DAY for that damn scan!  Rather than going home to rest, she came with me to the scan.

Part of being “sick” is learning to wait.  So, of course, the aides parked my wheelchair in the “waiting area”, so aptly named.  Then my friend and I waited and waited.  We talked about casual, mindless things until we noticed a frail, elderly woman laying there alone on a hospital bed, crying out, “Help me.  Help me.”  She just kept repeating it, over and over.  She was too far from the desk for anyone to actually hear, or at least I want to believe that no one could hear her cries.

I could not get up from the wheelchair, but my friend who always cared for others more than herself, as weak as she was strode up to the desk and demanded someone assist the elderly woman.  When she sat back down next to me, we sat in silence.  We were thinking the same thing, although we didn’t want to say it out aloud.  Finally, as we shook our heads in sync, she finally uttered it.  “I never want to wind up like that.  I’d rather die before I get to that point.”

I didn’t have to say it.  She already knew.  Yet, I said it.  “I agree.”

AT THE END

I was thinking of that moment when I finally said, “Goodbye” to my friend.  People tried telling her husband that she was essentially gone-just a vegetable.  He refused to believe it.  However, I was sincerely scared of what I’d walk into when I entered her hospital room that day.  Was her husband right, or was he just in denial?  Would she look like that old, pale-faced woman crying out in distress?

As always, my friend never ceased to surprise me, or anyone, by her strength.  She looked so good.  Her hair had grown back enough that her husband and other visitors could put beautiful hair bands and scarves around her head.  Although she was nonverbal and could not move any part of her body, I knew the friend that I loved so dearly was still with us.

Another 2 women, who had known her longer than me (sadly, it was brain cancer that brought us together), were saying their “goodbyes”.  Her head was permanently turned to the right side, looking out of her hospital window.  I didn’t even think to walk out and give them all privacy.  In my defense, I was less than a few weeks out of my 4th surgery, connected to a 24-hour portable IV pumping an insanely strong antibiotic through my body, hoping to kill the massive infection in my skull bone.  (Yes.  That WILL be another post in the future).  I watched as she closed her eyes.  At that point, her friends decided it was time to go, so now it was my turn…

Everyone left the room.  It was just us, once again.  Yet now, it was so horribly different.  I sat down next to her bed and just began rambling.  I had a card of St. Jude in my hand and unconsciously, began rubbing it against her one hand while gripping the other, which was in a permanent fist from the seizure.  Suddenly, her eyes opened.  Again, she could not move so she remained staring out of the window.  Yet, I knew she was hearing me.  She was still there alright!

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So, I began telling her how much she meant to me; how I didn’t know how I’d get through this without her; how I never thought we’d “be here”; how we were never supposed to “be here”.  We were supposed to grow old together with our husbands.  We were supposed to drink lots of red wine together.  We were supposed to see a cure to this wretched disease.  As I rambled, her hand began to tighten around mine.  Skeptics would say it was some involuntary movement, but I know it was far from that – she was telling me in the only way she could to stay strong and keep up the fight.  Even if her poor, diseased brain didn’t fully comprehend every word I said, her soul knew.

Eventually, it was yet another person’s turn to come in. I spoke loudly enough to ensure that if she could hear and understand me, she’d know.  I told her husband how strong she still was and that she was assuredly still with us.  As I went to leave, I came around to her side, kissed her forehead and said “I love you.”  I noticed two little tears at the corner of each eye and asked her husband, “Is this normal?”  He said, “No!  I’ve never seen tears in her eyes before.”

Walking out of the hospital that afternoon, I wasn’t sad.  I felt at peace.  Although I said, “Goodbye” to her physically, I knew I’d she her again.  Not in that body, of course.  She passed about one week later, fighting til the last moment.  Yet, I knew she would always be with me.  She would be amongst my army of guardian angels.

LOOK FOR THE SIGNS

I can’t think of how many times I know my friend has shown she’s still with me, looking over me.  About a year ago, I was walking along the seaside in Europe.  It was late in the afternoon.  There was practically no one in sight.  All of a sudden, I began to think about her.  Out of nowhere, I heard something that eerily sounded like my name.  I suddenly looked up and saw this beautiful, white bird soar across the sea.  I just smiled and uttered her name out loud to myself.  Then, another time while thinking about her, a monarch butterfly fluttered next to me.  And last week, when I learned of that young man’s passing from a GBM, a pristinely white butterfly hovered around me.  I believe that was my friend assuring me that she would take care of him, just as she’s always taken care of me.

In moments of grief, sometimes (well, most times) there are no words.  Yet, sometimes we don’t need words – just look for the signs.

 

 

 

 

 

“Mommy Dearest”

Before I begin what is essentially a rant I wrote several months ago after an incident with a mother…  a little background on my childhood.

I grew up in a wealthy suburb outside of New York City.  Although my father was a doctor, I was considered one of the “poor kids” because my mother actually worked.  In fact, my parents work together.  Dad is the stoic professional.  Mom is the “everything else” – the first one to rise, the one that handles all the bookwork, all the appointments, and on and on.

While most of the kids in my small, private grammar school had their mothers breezing into the cafeteria in their pristine white tennis skirts to drop off McDonald’s for lunch, I rummaged through my sad, brown bag lunch of Wonder Bread and a slice of American cheese.

The worst were the “egg sandwiches”, which were literally sliced, hard-boiled eggs, slapped onto some bread.  Trust me – you don’t want to be the kid that brings “egg sandwiches” to school!  It’s like that co-worker, who constantly microwaves their fish from last night’s dinner, stinking up your entire office for hours.  Yeah – THAT person.

I was always the first child at school. Some mornings, the building was still locked when my father dropped me off in a rush to get to the office.  I’d simply wait outside until the janitor or principal let me in.

At the end of the day, I’d watch my schoolmates get into their mothers’ Mercedes, BMWs and Jaguars, who had all lined-up in the parking lot well before the last bell rang. Some families even took limos to and from school everyday.  My mother didn’t even drive.

More often than not, I’d be the last one in the parking lot, not knowing if my father or one of his assistants would be picking me up.  I always felt so deeply ashamed when an assistant showed up in one of their beat-up, old cars.  Thankfully, at least in my adolescent eyes, they were usually late.  So, no one would have to see me getting into “that” type of car.

My mother was literally told I would not be able to join the Girl Scouts, with all my other friends, because she worked. She could not “help out” like the other mothers.  See, I had made the mistake of catching a stomach virus on an overnight trip while still a Brownie.  Since my own mother hadn’t chaperoned, another mother had to deal with me.  So, the class mothers all agreed I was “too much work”.  Unless my mother could commit to come with me on overnights, I would never become a full-fledged Girl Scout.  Ironic how a slutty Girl Scout is now such a popular Halloween costume, because that experience was definitely a nightmare during my childhood.

You see, these Mommy Dearests didn’t have to work, or chose not to.  They weren’t immigrants like we were.  They weren’t working night and day like my mother and father, building a successful medical practice.  My mother grew up on a farm.  She could care less about what brand-name clothes she wore, or her style of purse. While the other mothers came to our Christmas shows in full-length fur coats, my mother barely had time to change out of her scrubs.

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I’ll be honest.  I resented my mother because she worked so much.  There’s probably still some deep-seated resentment lingering there. Yet, now as an adult watching my friends and family become mothers, I realize how utterly selfish and entitled those Mommy Dearests were and how it still affects me to this day.

My mother did everything in her power to ensure I was cared for, even though I didn’t realize it at the time.  I am so thankful for the sacrifices she made because it could not have been easy.  She made me who I am today – a strong-willed, independent, intelligent woman.

I am not a mother.  I likely never will be.  I am happily married to the love of my life.  We travel.  We go out to expensive dinners and treat ourselves to spa days.  We do what we want, when we want.

However, a year and a half into our marriage I was struck by the “Big C”.  Typically, that’s supposed to be the time you start discussing children. You’re supposed to consider whether your one-bedroom apartment is enough.  Do you stay in the City, or should you buy a house and move to the burbs? How many children are you going to have, or can afford?  Could I really go back to work six weeks after having our first child?  Because of course, in the States, that’s all the maternity leave my firm offered.  Would it even be worthwhile going back to work given the cost of childcare?  These are the questions you’re supposed to be asking yourselves.

Well, we never even got the chance to consider those things. We had to manage my illness, my multiple surgeries, my inability to return to work, my mounting medical bills, my medications and their side-effects, the never-ending doctors’ appointments, and frankly – whether I was going to live or die.

***DISCLAIMER: This does NOT apply to every stay-at-home Mom, or to all mothers in general***

So, to all the Mommy Dearests out there, I have a few lessons.  If you prefer the term “suggestions” that’s fine too.

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·     You are not better than me, or special because you are a mother.  Unless there is some complication, any woman anywhere can have a child.   Women have been doing this since the dawn of time!
·     You also didn’t earn some virtual Ph.D. on how to love and care for others because you popped out a kid or two.  You didn’t win an Olympic Gold Medal because you have a child.
·     If I choose to tell you I don’t have children, it’s not okay to ask, “But why not?”  It’s none of your business.
·     It’s also not okay to pity me because I don’t have children.  There’s a chance, even with my illness, I’m happier than many of you.
·     It’s definitely not okay to tell me, “Maybe you’ll be able to still have children one day”, as if you’re bestowing some kind of hope upon me.  I’m not some pathetic soul simply because I do not have a child.
·     Your child should be your world, but he or she does not have to be mine.  Just because your life may revolve around your child, mine doesn’t.  So, if your kid is riding along 200 ft. in front of you on his scooter, I shouldn’t have to step aside with my cane so Little Timmy can rule the sidewalk.  Also, you can say, “Thank you” when I hold the door for you and your double-stroller.  Or, you could even move that double-stroller out of my way as I struggle to walk through the maze you and your Mommy Dearest group have created with those strollers in our tiny, local coffee shop.
·      STOP with the “Mommy Brain”!  Guess what?  I literally have damage to my brain.  So, sorry to tell you, “No, you just forgot shit.”
·     STOP saying raising your child is harder than going to work!  If you forget to do the laundry, you’re not risking losing your job, an income and/or health benefits.  ***DISCLAIMER: Again, this is not directed to all stay-at-home Moms.  It is very, very hard to raise children.  This only applies to those select entitled mothers, who think they’re God’s gift to the world having had a baby, and who look down upon those of us who don’t have children, or mothers who work***
·     STOP complaining about how tired and stressed you are because you had to help Little Sally complete her science project!  Yet, your day was spent going to a spin class or tennis lessons at the country club, followed by lunch with your girlfriends, then picking-up your kids in your Range Rover to return to “the Club” for their tennis lessons, only to pick-up dinner and then start working on Sally’s science project.  You know who is tired and stressed out?  That other Mom who woke up at 5:00 a.m., went for a run because it’s the only time she has for herself, cooked breakfast, got the kids dressed, fed them, got their backpacks together, made sure they had their lunch with them, drove them to school, then went to work for 7 hours, got yelled at by her boss and a client, then left work because the babysitter will only stay until 6:00 p.m., got home and cooked dinner, sat down with the kids to do their homework, bathed them, finally put them to bed, only to hop on her laptop to finish the project due tomorrow morning.  Now that woman is tired!

A mother is not neglecting her child by working.  If you choose to work, or have to work, you are not a bad mother.  In fact, you’re superwoman.  By the same token, if you have the ability to stay at home to raise your children, more power to you!

Thus, not every mother is a Mommy Dearest.  I know that.  Yet, some months ago I was told that I “didn’t understand” a situation involving a grown adult and his mother because I “didn’t have a child” and “never created that special bond” by having a child.

So to all those darling, Mommy Dearests of the world, I don’t need to touch a flame to know that fire is hot.  I don’t need to stick my tongue against a frozen flagpole to know it’s cold.  (If you don’t get the reference, you weren’t a child of the 80’s).  And I certainly don’t need to have a child to have a beautiful, happy, love-filled life.

Yes, having a child was certainly a decision taken out of my hands because of cancer.  Yet, I’m not sure I would’ve ever decided to have one.  There could even be a day I write a post about getting pregnant.  Who knows?  Regardless, just don’t judge a woman if she doesn’t have children.  You haven’t walked a day in her shoes.

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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.

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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.

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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..

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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.


The Dreaded Word – Recurrence

I think it’s safe to say that every single cancer patient fears that dreaded word – recurrence.  We may not think about it every single moment, of every single day.  However, every survivor I have spoken with over these last 2 years admits, “It’s always somewhere in the back of my mind.”  In this awful world of cancer, is there really anything more frightening?

Cancer Attacks

Going back to my original diagnosis and the beginning of the “cancer chaos”, I technically remained “cancer free” following my surgery in April 2014.  Yet, I then underwent treatment for cancer, obviously in an attempt to remain “cancer free.”  I recall asking my radiation oncologist, “So, what do I say?  Do I actually have cancer?”  She looked at me with a questionable smile and said, “Well, you don’t have a tumor, but you are being treated for cancer.  So, there is really no easy answer to that question.”  Fair enough.

I HATED it when people said, “Oh that’s great!  You’re in remission!”  The other comment that made my skin crawl was, “So you’re cured!”  Hmmm… not so much.  I don’t blame them.  People who haven’t lived through this really don’t truly understand.  They mean well and only want the best for me.  It is frustrating though.

Anyway, 2014 rolled on.  MRIs all looked clear.  I was back at work.  No more treatment.  Sure, I was still on anti-seizure meds, but those weren’t going away any time soon.  I still had physical therapy, but I was exercising regularly and could do every workout I wanted.  Yes, I remained in therapy every so often.  Cancer is a true trauma and a little professional help goes a long way.  I was heavily involved in charity organizations, which gave me so much strength and purpose.  I was meeting so many other amazing survivors.  Life was really pretty much back to normal, although we all know it was the “new normal.”

The fear of a recurrence never went away.  However, it didn’t dominate my thoughts.  There were even moments I didn’t even think about cancer!  I almost forgot about it… almost.

So 2014 came to a close and I decided to celebrate the end of the hardest year of my life in the Caribbean with my husband.  We sat on the beach, sipping champagne.  We ate A-mazing food.  We watched the fireworks over the ocean on New Year’s Eve.  God, life was good.

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We rang in the new year in style, but it was back to reality.  And boy, did reality strike like a ton of bricks.

In February 2015, ironically just after my 35th birthday, my MRI began to show an enhancement at the surgical area where the original tumor had been removed.  It was extremely small, so my doctors could not absolutely confirm it was indeed a recurrence.  We would just have to wait and see.

So there it was – that dreaded word.  My biggest fear staring me in the face.  Yet, I didn’t even have enough information at that point to even confirm, yes, the tumor is back.  I would be stuck in limbo for the next few months until my next MRI.  The hope was that the enhancement would remain stable, indicating that it was likely just a side effect of the radiation.  However, if it increased, then, well, it was likely it was a recurrence.

Simply by reading the title of this post and it’s category, the recurrence was eventually confirmed.. but I’ll get there.