The ORIGINAL “ABOUT” (WRITTEN IN 2016)
I’ve gone and done it. I’ve started a blog.
I was recently challenged to “tell my story.” Yet, where do I begin? Well, here goes it.
In the last two years, I’ve gone from a young, successful, professional woman with her whole life ahead of her, to a now two-time brain cancer survivor, who isn’t so sure where life will take her.
While I cannot express myself as beautifully as Deepak Chopra, he teaches that our beliefs give us our identity. In other words, “What I believe is who I am.” One of our limitations in life is that we define ourselves by labels, rather than by our beliefs.
If I were to explain who I am with labels, I could tell you that I am a girl (yes, I like to still call myself a girl) in my mid-30s. I am a wife and a daughter. I’m a proud doggy mama to the most precious puppy ever. I consider myself a “New Yorker” although my technical location is just a mile outside of the City. I’m a well-educated, successful attorney.
And, I am a cancer survivor/thriver.
However, in following Deepak’s teachings, it is my beliefs that make me who I am. While I am in no means some spiritual guru, I deeply value this type of thinking. So, I will tell you that I am deeply loving and do my best to be kind. I am compassionate and empathetic, sometimes even to a fault (i.e. Please do NOT show me those ASPCA commercials anymore! So many tears!). Along those lines, I am extremely sensitive, which I find to be a strength and not a weakness. I am trustworthy to my core. I’m proud of the person I am and especially, the person I have become in these last few years. Of course, I am also not perfect, and have plenty of flaws, but who needs to hear about those anyway?
And now, it looks like I am a blogger.
DEDICATING THIS BLOG:
I am dedicating this blog to sharing my experiences with cancer as a young adult, struck by this awful disease in the prime of my life. I hope that through telling my story, I can help others affected by cancer, and really anyone who has been challenged by life-altering, mind-blowing circumstances that have turned their world upside down.
If “what I believe is who I am” then ultimately, I’m just a girl tryin’ to beat brain cancer, who believes, who knows, she will conquer anything that is put in her way!
UPDATED “ABOUT” (WRITTEN IN 2019)
The original “About” was written when I began this Blog. Well, sitting here today in 2019, quite a few things have changed:
- I stopped writing for many reasons, but to be fair on myself, I had multiple health issues that arose.
- Did I lose focus? Yes.
- Did I have any drive to write? Not really.
- I did continue telling my story, but at speaking engagements, charity events and even some podcasts.
- After my May 2016 surgery, I had hoped and prayed that I’d never see another operating room. I was VERY mistaken.
- I became very depressed after that surgery.
- A 1/3 of my scalp was my stomach and I was and always will be completely bald on that part of my head.
- My stomach has a huge scar from where they took the graft, so I am constantly reminded of my condition. At least before then, I could forget about having had two bouts of brain cancer.
- Now, every time I get dressed I look down at that massive scar and every time I leave the house trying to hide my bald spot, I say to myself, “Yep, you definitely had cancer!”.
- My mobility and strength on my left side progressively worsened. I was forced to wear an AFO brace on my left leg, (no more high-heels, or anything remotely pretty for me anymore). It’s ptretty much sneakers only. I started to walk with a very noticeable limp and still do.
- Although I fought it for so long, I was forced to start using a cane. I don’t need it 24/7, but damn, I hate that thing.
2017 may have been the worst year of my life. Just some of the “highlights” (that’s meant to be read dripping with sarcasm) are below.
Yet another surgery in which they found 3 separate bacteria in my skull bone, 2 of which were highly antibiotic-resistant and could’ve been deadly;
A full month on a 24-hour portable IV of an antibiotic so strong it turned my skin grey (my infectious disease doctor literally said, “I cannot believe you made it a full month on this!” Comforting!
My dear friend passing away from brain cancer and having to say “Goodbye” while carrying around my IV machine and feeling sick as a dog beyond the absolute, heart-breaking grief of losing her;
Hospitalizations in 4 separate institutions for uncontrollable seizures and acute rehabilitation to recover from the havoc those seizures wreaked, including significant problems using my left hand. So, even if I wanted to type, I was physically unable.
Over 6 months of steroids, which made me gain over 20 pounds. I’m an extremely petite 5’2 woman, who could still fit into my prom dresses. Those extra 20+ pounds were insane and cost me serious money in having to buy a brand new, very unwanted wardrobe!
Around Thanksgiving of ’17, my oncologist was convinced my tumor had returned, although the tumor board had mixed feelings. My holidays were spent sending my records to the top neuro-oncologists in the country, as well as in-person meetings with many of them. No one knew the answer. I just had to “wait and see” what the next scan in January of 2018 showed. What a great way to end a truly horrendous year!
Thankfully, the scan showed that the suspect area had shrunk and everyone breathed a bit easier that it was just good old radiation necrosis. Yay! 😒
I was again hospitalized for my seizures, while my doctors tried to find the right “cocktail” of meds. We’re STILL working on that one!
It seems I can only have a month or two without another catastrophe. Just before summer began, my favorite season if seasons even exist anymore, I began losing my balance and falling constantly. Although I had been working so hard at PT and OT, at this point everyone agreed it was no longer safe for me to travel for therapy. I was “homebound“, only “allowed” to leave my apartment for doctor’s appointments.
I had to get a home health aide assigned to care for me. This overly independent girl was less than pleased by this situation. Thankfully, I was assigned a wonderful aide.
Since I couldn’t travel to my hospital for my regular PT & OT sessions, I had to receive services at home. My home PT was not fantastic, but my home OT therapist was incredible.
During this “period”, I underwent a few infusions of the only drug (apart from steroids) to treat my necrosis, the root of all these issues. The drug, Avastin, is known to cause bleeding. It’s one of its major side effects. Well, let’s just say, for 6 straight months I bled, and bled, and bled. I had to see OBGYN specialists, a hematologist and ultimately had to get iron infusions because now I was severely anemic.
Thankfully, the Avastin did ultimately shrink the necrosis back to my baseline. Hooray! I could return to regular PT & OT! I was no longer “homebound”. Yet another summer had passed me by though…
The year was coming towards a close, when we got the news my Aunt in Ireland was severely deteriorating from MS (Multiple Sclerosis). Now, all my family apart from my parents and one cousin are back home in Ireland. I wanted to hop on a plane immediately. She had battled her diagnosis for about 40 years. I didn’t want to say it, but deep down I knew it was the end. However, I listened to everyone who believed she’d pull out of it. She had so many times before…but I couldn’t shake the feeling that this time was different.
Just days before Christmas, she indeed passed. I woke up at 4:00 am on Christmas Eve to watch the funeral service over the Church’s videocam. The day after Christmas, I was on a plane back to be with my family. My Auntie, who had fought a neurological disease since her early 30’s, was gone. I pray I will always be as strong as she was! While it was fantastic to be with my family, everyone back around for the holidays and off of work, it was under such sad circumstances. Once again, another deeply sad holiday season.
With the end of 2018 being so deeply upsetting, thankfully I had a girls’ trip already planned to the Caribbean. God, did I need the sun and the beach! So, 2019 began on a good note with that trip. It would not last long…
By March, I was again falling, losing my balance out of nowhere. Despite numerous consultations with top doctors, and my best attempt to avoid it, Avastin once again entered my world.
After just ONE infusion, in the matter of a few days my pristine, perfect skin flap developed a wound. The wound went deep enough to expose my skull.
Avastin can prevent wound healing, so surgery to close the wound had to wait months. We had to ensure the Avastin was completely out of my system.
Literally on the 2-year anniversary of my friend’s passing from brain cancer, my plastic surgeon confirmed that surgery would have to be scheduled. I cried and cried, explaining to my doctor how hard this day was – not just hearing that surgery No. 5 had to be scheduled, but that it was the anniversary of losing my friend. He understood and left the exam room reassuring me it would be “okay”.
As my husband and I were gathering my things, I was talking about how unfair it all was. Absolutely out of nowhere, the sink began running! It was my friend there reassuring me that it would indeed be “Okay“.
My original neurosurgeon had very deservingly retired, so I had to put my trust into yet another surgeon’s hands. Although my plastic surgeon would lead, neurosurgery also had to do their “thing”. Yet, we still weren’t sure exactly what that would entail until they opened me up!
In June, yet again I found myself in the Operating Room. 5th time’s a charm! Haha!
Thank God for my hospital and my incredible surgery teams. Neurosurgery went in after my plastic surgeon excised the wound. Apparently, a piece of my skull was “floating” unattached to the rest of my skull. It was “nonviable”, greenish in color, and full of holes (like Swiss Cheese). My actual brain thankfully looked perfectly healthy. So, easy peasy! They closed me up and despite a disagreement between the surgeons, my plastic surgeon made the final call. I was released that night!
So, I’ve now undergone 5 surgeries by this point. I still suffered with my epilepsy, having at least one seizure a month. I was back in PT & OT working hard to get stronger.
Importantly, I’m back to writing!
AND YET ANOTHER UPDATED “ABOUT” (sang to the tune of Billy Joel’s “And So It Goes”)
(WRITTEN IN 2020)
Since I was only hospitalized multiple times in 2018, and avoided the Operating Room I obviously had to make-up for it in 2019…
After the June surgery, I really really thought everything would settle down and I’d be able to have just a few months of a reprieve. 😂😂😂. Who was I kidding?
In August, hubby and I started “adulting” by FINALLY moving out of my 1-bedroom apartment that I’d lived in since August 2002. We planned a big Housewarming Party for late September once the new apartment was in decent shape. We traveled to Europe. Everything really did seem to be going good.
Well, in Europe I began falling again. I just knew something was wrong, and of course, it was indeed very very wrong.
Once again, the radiation necrosis caused severe swelling in my brain. By now, we were out of non-invasive options. Time for surgery No. 6!
I won’t go into it all here, but I made a very difficult decision to leave my main treating hospital and trust a neurosurgeon at another extremely renowned hospital. If interested, my reasons are explained here: https://braincancerbabe.com/2020/05/11/another-surgery-down-now-recovering-in-so-many-way/
Thank the Good Lord I trusted my gut because now I have another remarkable, kind and caring neurosurgeon.
My year ended as usual. On December 5th, I was back in the O.R. undergoing a bur hole craniotomy in which a needle was inserted into my brain to drain the lesion/cyst that was constantly filling with fluid. The pressure this fluid causes in my brain cavity is the direct reason I why I lose my balance and fall. It causes unbearable fatigue, migraines and increases my seizures.
Immediately after, I felt great. I regained use of my left hand, which I lost with all the fluid build-up. I walked around without my wretched cane. My recovery was short-lived.
The fluid returned and I became a prisoner, unable to leave my home safely. I was quarantining waaaaay before COVID forced us all to!
Thus, the pattern continued. My holidays were spent preparing, worrying and severely depressed because another surgery was around the corner. However one major, major victory occurred:
My surgeon confirmed I was 100% cancer-free!!!