“Remission” – A New Perspective

A new perspective on “remission”

Remission

I cringe when I hear the word. I especially cringe when I’m asked, always in a high-pitched, much too enthusiastic tone,

“So are you in remission now?”

I know and understand why people ask. I also know that by asking in a gleeful way, it’s because they hope the answer will be a resounding “Yes!”

Personally, the question only forces me to immediately assess, right there on-the-spot how I’m going to answer every single person who asks. Do they want the truth? Are they simply asking because it’s what society has dictated we do when we see a young adult, who doesn’t look “sick”? Also, do I really want to go into the ugly details of it all? How much time do I/we have?


Some potential answers to the remission question include:

  • Yes! I am cancer free for just about 5 years now!”
  • Yes! I am cancer free for just about 5 years now… However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred in less than a year. So technically the last tumor was removed in 2015. Since then I’ve had: 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy.”
  • Yes! I am cancer free for just about 5 years now! However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred less than a year later. So technically the last tumor was removed in 2015. Since then I’ve: Had 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy…I cannot say I will ever truly be “cancer free” because the cancer combined with the treatment changed almost every single aspect of my life. I will never be the same after cancer. Not only do I have a multitude of scars to prove it, but I will never again be free to do the things I loved like swim in the ocean, scuba dive, hike, or even run, which frankly I never loved but having the ability to catch that subway just about to pull away or make it to the bus stop just in time to grab that last bus – nope, can’t do it.

So, while it’s confirmed there are no cancerous cells in my body, do I feel like I am “in remission”? Absolutely not!


I can’t even begin to list all the ways cancer remains with me, but ya name it, and cancer has affected it.

For example, just the most mundane, everyday things:

  • Getting up in the morning – for me requires immediately putting on sneakers with my AFO, or leg brace, for balance and stability to get out of bed and walk around. Not just that, due to the issues with my left hand, it takes at least 3 tries to even get my sneakers tied. (I tried elastic laces and they would not support my AFO properly)
  • Getting dressed in the morning – for me, it’s a chore! I have to pull a Macgyver move to get my bra on properly. I constantly put clothes on backwards. Anything with a zipper is a true challenge.
  • Already what would’ve taken a fully-able-bodied person to do in 5-10 minutes has taken me at least 20.
  • Looking in the mirror – I must mention that every time I look in a mirror, I’m reminded of cancer. I have a slight eye droop that isn’t even noticeable to others. I see it though! About 1/3 of my scalp is a graft from my stomach so I’m completely bald there.
    • During the last few surgeries: 1. A piece of skull was removed, so my skull has a noticeable divot. 2. The shunt that was implanted during my last surgery creates a noticeable bump towards the front of my head. Thank god I still have lots of hair and fantastic hair pieces!
    • Then, because I’m so thin, I can actually see the shunt catheter, which runs from my brain down near my heart and into my abdominal area. I have a massive scar from the skin graft running down my entire abdomen. Plus, now I’ve got two new scars from the laparoscopic surgery to insert that catheter into my stomach. Yay!Oh and my bellybutton is about 6 inches from where it should be.
    • Of course, all of this is hidden away underneath my clothes, but I have to look at it all EVERY SINGLE DAY and frankly, I hate it. I cannot embrace these scars, like so many survivors do. To me, they’re just constantly reminding me of the trauma.
  • Showering – I have to use a shower chair and utilize grab bars to get in and out of the bath or shower. I can’t get my left arm up high enough to use my left hand to wash my hair. So I have to use just one hand to scrub in the shampoo and conditioner. It’s also difficult to use that left hand to squeeze the bottles, apply shower gel, etc.
    • For whatever reason, hot water and steam make me extremely light-headed and dehydrated. So I always need a glass of water nearby, the door must be open to let the steam out and I can typically only shower at night because it makes me extremely tired and/or weak. Again, due to the problems with my left hand, I can never get the towel wrapped around me. So, I have to towel-off in the bathroom and put on a robe or my pjs.
  • This whole process takes at least 30 minutes, while an able-bodied person could be done in 5-10 minutes.

Now, those few examples are just a taste, a sprinkling of what cancer has done to me physically, mentally and emotionally.

I love that other survivors can embrace the remission word, and I recognize the power that comes with the ability to say, “I’m in remission.” That’s just not the case for me.

Further, I wish I could say, “Cancer doesn’t define me!” like so many other survivors. However, for me cancer is and will always be present despite the fact that my physical body is “cancer free”.

Cancer is and will always be a part of me. It is a crucial piece of who I am today and who I will be in the future.

Plus, cancer will forever lurk in the darkest corners of my mind. Unless there’s some magical potion we discover one day, I will forever have to acknowledge/be aware that a tumor could indeed return at any time. It’s not something I dwell on, but shall I say, “it’s the nature of the beast.” Cancer can and does come back. I’ve already experienced a recurrence. So, I’m literally living proof of this awful truth.

If I had a Quarter for every dang time I’ve said this… well, I wouldn’t be rich because I’m constantly paying my medical bills!!!

The quote pictured at the top of this Post from ANITA MOORJANI on remission speaks to how I’ve internalized cancer in my life. Although I’ll never be able to say, “I’m done with cancer” I have indeed turned it into my “mission”. Hence, why I began writing this Blog, am working towards publishing articles on my experience, and ultimately a book.

Cancer also led me to finally find my passion working with various nonprofits to raise awareness about cancer in general, but mostly awareness about brain cancer; to serve as a patient advocate with the National Brain Tumor Society; and, to constantly fundraise for more research, treatment options and Dear Lord please, ultimately a cure!

Yes, it took two bouts of brain cancer to find it, but I found my passion-my mission! While every single day is a new challenge, every single day is also an opportunity to work on myself.

So, I believe I’ve found a new perspective on “remission”. It’s my mission.

To Learn more about ANITA MOORJANI, go to her website at https://anitamoorjani.com/. She has a fascinating story. In short, after four years of battling cancer, she went into a coma. Her husband was told:

“There’s nothing we can do for your wife, Mr. Moorjani. Her organs have already shut down. Her tumors have grown to the size of lemons throughout her lymphatic system, from the base of her skull to below her abdomen. Her brain is filled with fluid, as are her lungs. And as you can see, her skin has developed lesions that are weeping with toxins. She won’t even make it through the night,” the doctor told my husband, Danny.

https://anitamoorjani.com/

Anita, describes what occurred in the following hours, days and weeks. She had a Near Death Experience (NDE) and details how she chose to return to her body to spread her message-her mission! Obviously, she came out of the coma and left the hospital 5 weeks later with no evidence of cancer anywhere in her body!

ANITA MOORJANI

To Learn more about the National Brain Tumor Society go to their website: www.braintumor.org

Very Temporary Pause

Very Temporary Pause

I’ve been working on my next Post, but I’ve got to hit a very temporary “pause button”.

I’ve been suffering with migraines and major emotional issues. I’ll be back in a few days with my next Post.

Even after being cancer-free for 5 years now, the wicked side effects of so much treatment continue haunting my poor body.

What’s a “Bur Hole” Anyway? (Surgery No. 6)

There are a ridiculous amount of medical terms you learn as a cancer patient.

There are about 130 different types of brain tumors alone. Never mind having to learn about the areas of the brain the tumor may affect, then what part of the body that area of the brain it controls, and on and on. I practically feel like we, as cancer patients, should be awarded medical degrees!

As an attorney, so much of my job involved research. Since my diagnosis nearly 6 years ago now, I raise issues with my doctors to the reply of, “Oh, that’s a very good point.” I’ve sent my doctors articles about new research, trials and information they admittedly were not aware of prior to me bringing it to their attention.

Yet, after receiving my discharge papers following my sixth surgery, I learned a whole new phrase, “bur hole craniotomy”!

Obviously, prior to the procedure I knew what I was going in for – a needle was going to be inserted into my brain to drain the lesion/cyst in my head that’s constantly filling with fluid, causing swelling and pressure to build up in my brain. That pressure then causes me to lose my balance and fall, causes unbearable fatigue, increases my seizures and makes me a prisoner because I cannot leave my home safely.

On December 5th, I underwent the procedure. Immediately after, I felt great. I regained use of my left hand. I walked around without my wretched cane. However, I experienced and am still battling intense migraines. The recovery was short-lived because the fluid has returned.

The Real Superhero Film

I’m very excited about a project I’ve been working on for a few months now. Drumroll please…. I’m gonna be in a movie!

Okay, very weird tidbit about me – I was actually an extra in an “after school special” type movie back in high school. It starred some pretty famous people, but they probably would rather forget about it. After all, it was pretty cheesy.

However, this film is going to be truly amazing. I hope that anyone reading my lil blog here will follow our progress on social media and our website, which are all below.

The Real Superhero Film” is a feature-length documentary film that explores human stories of cancer survivors, as well as those who dedicate their lives and careers to helping cancer patients. They include esteemed physicians, nurses, nurse practitioners, and others.

The film will include a variety of intimate interviews, as well as casual and deep conversations about cancer from people of all ages, nationalities and walks of life. Naturally, the theme will be how these particular cancer survivors discovered their “superpowers”.

“Turn your pain into purpose”

A recurring theme in the film

Additionally, experts and medical professionals will discuss their work using their own “superpowers” to help enrich and save cancer patients’ lives.

****Super Bianca!****

Ultimately, the film will show that there are real superheroes all around us!

AND this all came about just by a chance meeting (I’d call it fate) during a physical therapy gym class and my very rude habit of eavesdropping on strangers.

There I was, riding along on the stationary bike one day, and all I can hear is this woman’s Eastern European accent. I looked at this woman, who I just knew was a cancer sista’ in full-on pink, talking with such intense passion about ALL she was doing! Well, she was: filming a movie here in the States and Bulgaria about cancer survivors; she is an extremely famous actress in Bulgaria and even hosted the Bulgarian version of “The Bachelor”; she was working with our hospital to get a PET Scan machine donated to Bulgaria; and, heading a team in a walk for breast cancer. This was a Bulgarian girl-boss and I immediately loved her!

Now, months later we’ve been workin’ it to get this film going, along with the production crew.

The director/co-creator is an award-winning, veteran filmmaker. He has created multiple documentaries, one in particular that aired on PBS. He has also made several short films that have won acclaim at top film festivals worldwide.

The executive producer has one heck of a resume/C.V. too, varying from risk management at Deloitte & Touche, to running her own consulting firm while also embracing her passion for art and design.

Our P.R. and marketing representative is out of the esteemed Dale Carnegie Agency.

We have over 20 participants in both the NYC Metro area and several in Bulgaria, including Bianca’s mother. Very little known fact: The entire country of Bulgaria has only 2, Yes 2, PET Scan machines. Hence, Bianca’s mother waited nearly 6 months for a PET Scan to show she was suffering from lung cancer! There are also few hospitals treating cancer patients and some must travel hours and hours from very remote villages just for treatment.

This is certainly a one-of-a-kind film and I’m honored to be a part of it.

Keep on Fighting!

The Real Superhero Film” Information:

Website: http://www.therealsuperherofilm.com

Instagram: @therealsuperherofilm

Twitter: @therealsuperhe1

Also, a HUGE thank you to NYU Langone Hospital and Mt. Sinai Hospital in New York City, who have provided an immense amount of support.

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.

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.

 

 

So, Freddy Krueger And I Walk Into A Bar…

7-beautiful-women-who-have-faced-freddy-krueger-331432

It’s officially a week and a half since my 12-hour brain surgery/plastic surgery/infectious disease surgery/whatever it is that just happened to me.

I know that there will be several (okay A LOT) of posts that will cover what has happened over the last few weeks, but in a simple, non-medically trained nutshell… all of my radiation treatments caused my brain cells to die, which then caused the skin cells around my surgical/radiation area to breakdown, causing a serious infection that led to my titanium plate being exposed.  Enter an infectious disease team, a plastic surgery team and my established neurosurgery team…

I was advised that the infection would obviously have to be surgically cleared out, that my plate may or may not have to be removed, and that a portion of my stomach would have to be taken to create a new skin flap to cover the area.  Little did I know that I would wake up with my stomach now making up just about half of my head, as well as a giant incision starting from the top of my chest down my abdomen.  Oh, and my bellybutton is also now about 6 inches off from where it was just a few weeks ago.

So, I feel like Freddy Krueger and I walked into a bar and well, whatever happened, he clearly won.

I am thankful beyond words that I am alive, that I am recovering remarkably well and that I am even able to write this post, but… this time, the vanity thing is tough.

I feel like a monster.  While I know rationally, it will get better – the swelling will reduce, the bruising will fade, etc. – it’s just really, really hard this go around.

With my first surgery, you wouldn’t have known I’d even had surgery.  My hair only began to fall out a few months later due to radiation.  I thought that was hard.  However, I got a fantastic hairpiece (clip-on, not even a full wig) and absolutely no one could tell I had a bald patch hiding underneath.

Time went by and my hair started to grow back enough that I didn’t even need the hairpiece.  I only needed to style my hair the right way and all was okay.  I even left the hairpiece hidden in a drawer to get knotted and matted, thinking I really wouldn’t need it again.  How naive!

So, along came the second surgery and more hair had to be shaved down, but honestly, it wasn’t too bad.  I wasn’t going to cry over it.  Yet, once again, radiation came around.  I was actually away on my First Descents trip when my hair began falling out in huge clumps.  I stood in the bathroom at our camp site just crying while running my fingers through my hair as it immediately fell out.  Thankfully, being on a trip with cancer survivors, they all understood my hysterics.  Due to the high-dose radiation, this time my scalp looked red and severely burned (“angry” as one person perfectly described it).  It looked worse than before, but by the time it was all said and done, I wiped the dust off the hairpiece and adjusted to it all.  I also continued to rock what I like to call “the crazy bun.”  It was disappointing, sure, but manageable.

But now…since ya know, my scalp is significantly made up of my stomach, the hair will never ever grow back and it’s definitely not just a bald spot either.  (As a darkly humourous aside, my scalp now has freckles that were formerly members of my abs).  Sure, they say the swelling will go down too.  However, it’s really hard to imagine my head ever looking semi-normal or symmetrical.  There are sutures everywhere and because the plastic’s team had to connect artieries behind my ear, there is yet another incision there.

I’ve been dealing with the whole bald spot/scalp/hair issue for 2 years now.  I get it.  I had brain cancer.  I can’t expect that my head would look compleletly untouched.  However, I was not prepared for the additional disaster area of my chest/abdomen.  Again, I had brain cancer.  This wasn’t supposed to involve abdominal surgery with permanent scarring down the front of my body.  That wasn’t in the manual!

My stomach is also so swollen that I look about 10-months pregnant.  I am a very petite person.  It’s not a cute look.  In being such an intensly active person, my core was always so strong.  Now, I can’t stand up straight because of the sutures and the swelling.  I hobble around like an 80-year-old woman.

I hate that my poor husband has to look at me this way.  He is beyond amazing and justifyably tells me I’m being crazy.  He is not afraid to look at me, but I am.

I feel petty even complaining about these things.  Big picture – I’m alive!  So, so many brain cancer patients are not as fortunate.  Also, I’m sitting in my own home, on my couch, next to my incredible husband and my adorable pup.  I am not in the hospital.  I am not in a rehab facility trying to fight serious neurologic side effects.

I still do have everything.  I just wish I had never walked into that bar with Freddy a few weeks ago.  I should’ve just stayed the hell home.